- Mwiza Jo Nkhata
- Extra-Ordinary Professor, Free State Centre for Human Rights, University of the Free State, South Africa.
- MJ Nkhata ‘Access to justice for persons with disabilities in Malawi: Exploring challenges and possibilities in the criminal justice system’ (2020) 8 African Disability Rights Yearbook 124-149
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This paper interrogates the right of access to justice for persons with disabilities in Malawi. It begins by noting that, from a normative perspective, significant progress has been made in terms of securing the rights of persons with disabilities. This progress is reflected in Malawi’s ratification of the Convention on the Rights of Persons with Disabilities (CRPD) and the adoption of the Disability Act. The paper acknowledges that access to justice is a fundamental right for persons with disabilities since it can facilitate their enjoyment of other rights. After presenting the legal, institutional and policy framework that deals with persons with disabilities, the paper examines selected provisions in Malawi’s criminal procedure law and assesses their compatibility with the principles underlying the CRPD and the Disability Act. Amongst other things, the paper establishes that, the language employed by the criminal law is demeaning of persons with disabilities and that the procedures guiding criminal trials do not possess inbuilt avenues for facilitating reasonable accommodation. The paper recommends that an audit of all statutes in the criminal justice system be undertaken in order to inform legislative reforms or initiatives of reasonable accommodation. The paper also advocates for continuous disability-rights training for all actors in the criminal justice system and the domestication of the CRPD together with the ratification of its Optional Protocol.
The predicament of persons with disabilities in Malawi remains dire. According to the Government of Malawi:1
Persons with disabilities ... face numerous challenges that result in their exclusion from the mainstream of society, making it difficult for them to access their fundamental social, political and economic rights. Many make their way through life impoverished, abandoned, uneducated, malnourished, discriminated against, neglected and vulnerable. For them, life is a daily struggle to survive. Whether they live in urban centres or in rural areas, they share these common problems.
Like in many other countries, there is a close relationship between poverty and disability in Malawi.2 Generally, poverty can cause disability and disability exacerbates the effects of poverty. Persons with disabilities and their families, therefore, tend to experience deeper levels of poverty than the population at large.3 In a country like Malawi, where the government has conceded that poverty is deep and severe, this has profound implications for the enjoyment of human rights by persons with disabilities. Deep levels of poverty in turn entail inconsistent progress in the implementation of pro-disability rights interventions.4
The above notwithstanding, the legal landscape for persons with disabilities in Malawi has experienced significant changes over the past ten years. Two developments stand out. First, on 27 August 2009 Malawi ratified the Convention on the Rights of Persons with Disabilities (CPRD).5 Second, in 2012, Malawi passed the Disability Act after over eight years of procrastination.6 These developments remain pivotal in the realisation of the rights of persons with disabilities.7 The monumentality of these developments, notwithstanding, their practical impact is, largely, yet to be seen.
From an international perspective, the CRPD remains the primary instrument in so far as rights of persons with disabilities are concerned. In articles 12 and 13, the CPRD provides for a mutually reinforcing web of rights that are meant to guarantee equal recognition before the law and access to justice for persons with disabilities. The underlying theme in the two articles is that persons with disabilities should enjoy legal capacity on an equal basis with others in all aspects of life and also that they should have effective access to justice. In order for persons with disabilities to enjoy the right to effective access to justice, states are required to provide procedural and age-appropriate accommodations that can facilitate their effective participation in the justice system. From a standard setting perspective, it is also important to acknowledge the adoption by the African Union of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities. This Protocol, however, is not in force yet. 8
In respect of the domestic perspective, Malawian law is not oblivious to persons with disabilities. For example, the Constitution of the Republic of Malawi (the Constitution) expressly lists disability as one of the grounds on which discrimination is prohibited.9 Further, in section 13(g), the Constitution enjoins the state to take progressive steps to enhance the dignity and quality of life of persons with disabilities. Additionally, the Disability Act includes wide-ranging protections for persons with disabilities and is, arguably, an avenue through which the protections in the CRPD and the Constitution find detailed legislative expression. Specifically, in relation to the criminal justice system, although some significant reforms have been made to the Criminal Procedure and Evidence Code
a lot of measures still need to be in place to ensure that persons with disabilities have the support they need to ensure they can effectively access justice at all stages of the legal process.10
Flynn and Lawson have noted that while access to justice, as a topic of study, has received considerable attention, its disability-related dimensions have attracted little attention.11 Access to justice, however, is a fundamental human right of significant concern to persons with disabilities.12 Persons with disabilities, whether as victims of crime, accused persons, or even as witnesses are always at risk of having their rights undermined in the justice system.13
Perhaps as a manifestation of global trends, there have been very few studies in Malawi that are disability specific, for example, by interrogating the government’s implementation of disability policies.14 Although some studies have been undertaken covering rights of persons with disabilities, no study to date has specifically interrogated access to justice for persons with disabilities in Malawi from the perspective of the criminal justice system.15 It should also be noted that Malawi’s Disability Act does not include a specific guarantee on access to justice for persons with disabilities. This, however, must not be read to imply that persons with disabilities do not have the right to access justice in Malawi. This is because the Constitution guarantees ‘every person’ the right to access justice and legal remedies.16 Additionally, the interdependence, indivisibility and interrelatedness of human rights entail that other human rights recognised in the Disability Act can be used to facilitate access to justice for persons with disabilities. Nevertheless, the absence of an explicit provision on access to justice, in a law specifically meant to deal with rights of persons with disabilities, is an odd occurrence.
This paper interrogates the right of access to justice by persons with disabilities within the criminal justice system in Malawi. Specifically, the paper analyses the procedural and substantive guarantees contained, primarily, but not exclusively, in the Criminal Procedure and Evidence Code (CPEC)17 and the Penal Code18 to determine how these contribute to either enhancing or inhibiting the right of access to justice by persons with disabilities. This is achieved by isolating provisions from both the CPEC, the PC, and other applicable laws, and analysing them as against the guarantees in the CRPD, the Disability Act and the Constitution. Subsequent to the analysis, the paper makes recommendations for improving Malawi’s criminal justice system in terms of compliance with the rights of persons with disabilities.
The first part of the paper contextualises the discussion by providing a general background to the situation of persons with disabilities in Malawi and some of the applicable legal standards both internationally and domestically. The second part provides an overview of the legal, policy and institutional framework that applies to persons with disabilities in Malawi. The third part explores the right of access to justice in so far as it applies to persons with disabilities and unpacks its key elements. The fourth part explores the right of access to justice for persons with disabilities within the context of Malawi’s criminal justice system. The challenges and possible opportunities for persons with disabilities in Malawi’s criminal justice system are also discussed in this part of the paper. The penultimate section of the paper makes some proposals for improving access to justice for persons with disabilities in Malawi. The last part of the paper is the conclusion.
It is apposite to begin by conceding that disability is part of the human condition.19 Nevertheless, disability is a complex, dynamic, multi-dimensional and contested concept.20 The identification of the role of social and physical barriers in disability has led to the transition from an individual, medical perspective to a structural, social perspective of disability.21 The transition to a social perspective of disability has been described as the shift from a ‘medical model’ to a ‘social model’ in which people are viewed as being disabled by society rather than by their bodies.22 Although the medical model and the social model are often presented as being dichotomous, disability is neither purely medical nor social.23 Persons with disabilities often experience challenges arising from their health condition as well as their social environment. A balanced approach is, therefore, necessary in order to give appropriate weight to the different aspects of disability.
persons with disabilities include those who have long term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.24
This statement is a reminder that ‘persons with disabilities’ is a broad term which covers a wide range of individuals who have different types and degrees of functional impairment as well as different ages, genders, ethnicities, cultures, languages and a full range of other characteristics.25 The description of ‘disability’ in article 1 of the CRPD, which reiterates the exhortation in paragraph (e) of the Preamble to the CRPD, confirms the shift to the social model of disability. Under this model, the direct link between impairment and disability is broken by the introduction of ‘various barriers’, referring to the social, environmental and attitudinal factors which in their interaction with the impairment cause disability.26 Although the adoption of the CRPD confirms that the discourse on disability has moved to the social model, it seems to be the case that in Malawi ‘most people still consider disability as a charity issue’.27 This entails that there is still a lot of effort that must be expended to entrench the social model of disability in Malawi.
It is important to recall that the CRPD does not create new rights.28 It simply articulates how existing human rights are equally applicable to persons with disabilities.29 Further, since Malawi is dualist, in terms of the applicability of treaties, a domestication statute will be required before the CRPD is directly applicable in the country.30 The non-domestication of the CRPD, however, does not mean that the CRPD is irrelevant. Malawi remains bound to uphold the purposes of the CRPD under the principle of pacta sunt servanda - the general principle of international law that requires parties to honour agreements they voluntarily enter into.31 In the same spirit, Malawian courts can also have regard to provisions of the CRPD in interpreting constitutional rights.32
As earlier alluded to, the Constitution is the first repository for rights of persons with disabilities in Malawi. The Constitution remains particularly relevant since it establishes itself as the supreme law of the land and this entails that all laws, policies and acts of government are valid only to the extent of their compatibility with it.33 The Constitution also expressly proscribes discrimination on the ground of disability and authorises the government to adopt legislation or measures meant to address inequalities in the country.34 The Constitution is particularly relevant for persons with disabilities since it guarantees rights to ‘every person’ or ‘all persons’. The diction used by the Constitution leaves no doubt that the human rights that it guarantees are meant for the benefit of everyone including persons with disabilities.
Further, section 13(g) of the Constitution directs that the state must actively promote the welfare and development of the people of Malawi by progressively adopting and implementing policies and legislation aimed at enhancing the dignity and quality of life of persons with disabilities. This ought to be achieved, amongst other things, by providing adequate and suitable access to public places, fair opportunities in employment and the fullest possible participation in all spheres of Malawian society.35 The adoption of the National Policy on Equalisation of Opportunities for Persons with Disabilities (the Equalisation Policy) in 2006 and the passing of the Disability Act can, therefore, be seen as part fulfilment of the stipulations in section 13(g) of the Constitution.
The Equalisation Policy was developed in order to promote the ‘rights of people with disabilities to enable them to play a full and participatory role in society’.36 The aim of the Equalisation Policy is that people with disabilities must access the same fundamental rights and responsibilities as any other Malawian citizen. The Equalisation Policy identifies several areas in which persons with disabilities face significant challenges and where interventions must be targeted. Amongst the areas identified are the following: health care; HIV/AIDS; employment; concerns pertaining to women and children; and the political process.37 Apart from a general reference to the need to deal with exclusion, marginalisation and vulnerability, the Equalisation Policy never addressed itself to the specific challenges that persons with disabilities face when accessing justice in the country.
The Disability Act (the Act) contains provisions that are specific to the needs of persons with disabilities and its definition of ‘disability’ mirrors the CRPD. Importantly, the Act moves away from the medical or welfare model of disability that is contained in the Handicapped Persons Act and espouses the social model of disability.38 In section 3 of the Act, the government is mandated to adopt policies and legislation on the equalisation of opportunities for person with disabilities in order to promote and protect the rights of persons with disabilities and also to fully include them in all aspects of life so as to enhance their dignity and well-being. The Act provides for a range of rights including the right to healthcare services,39 the prohibition of discrimination in healthcare and rehabilitation services,40 the right to education on the basis of equal opportunity and inclusivity,41 and the right to work and employment.42 As earlier alluded to, the Act does not have any provisions directly focusing on the right of access to justice for persons with disabilities.
A survey of the policy, legal and institutional framework indicates that there have been some positive developments in relation to rights of persons with disabilities. Nevertheless, and in common with many sub-Saharan countries, persons with disabilities in Malawi continue to encounter high levels of exclusion, marginalisation and discrimination.43 It is also striking to note that in all the recent developments in Malawi that affect persons with disabilities, nothing has specifically been targeted at improving their access to justice.
For purposes of the present paper, it is important to acknowledge that different people with varying disabilities will experience different challenges in their access to justice. Additionally, various intersecting factors also condition the manner in which persons with disabilities enjoy their right to access justice and these include age, gender, ethnicity and the form of disability.44
While this paper will make general conclusions about access to justice and persons with disabilities, this is not in any way to suggest that persons with disabilities in Malawi form a homogenous group.45 The paper must simply be understood as suggesting that there are some common challenges that affect persons with disabilities in Malawi in so far as their right to access justice is concerned.46 The next section of the paper discusses, at a general level, access to justice for persons with disabilities.
The expression ‘access to justice’ marries two intellectually loaded concepts, ‘access’ and ‘justice’. Because of the ‘marriage’ that the expression creates, a full understanding requires equal focus on both ‘access’ and ‘justice’. Fein suggests that ‘access to justice’ has come to signify the many efforts made by a range of stakeholders to address the needs of historically disadvantaged populations in relation to the justice system.47 The focus on ‘historically disadvantaged populations’, while perhaps being justifiable, has been criticised for narrowing the full meaning of access to justice.48 It is fair, therefore, to understand access to justice as a broad concept ‘encompassing peoples’ effective access to the systems, procedures, information, and locations used in the administration of justice’.49 In the context of the present paper, it is important to bear in mind that access to justice is a fundamental right in itself and also an essential prerequisite for the protection and promotion of other rights. 50
Bahdi has identified three distinct, but interlinked components of access to justice and these are substantive, procedural and symbolic.51 While not without its limitations, especially when applied to disability-related access to justice, Bahdi’s formulation provides a useful starting point for understanding access to justice for persons with disabilities.52 First, the substantive component ‘concerns itself with the substance or content of the legal rules and principles which shape decisions made in favour or against those who seek a remedy or a dispute settlement’.53 This component requires the ‘development of laws and policies which promote substantive equality and stresses that this cannot usually be achieved without the involvement of the disadvantaged group’.54 Applied to persons with disabilities, this means that attempts to design laws and policies for persons with disabilities are bound to fail unless they deliberately seek to accommodate their participation.
Second, the procedural component of access to justice refers to the:55
types of institutions where one might bring a claim, the rules that govern the complaint and conduct of the parties once the complaint is brought within a particular institution, the particular mandate of a given institution and the factors - outside of the substantive law itself - which influence the nature and quality of the encounter
For persons with disabilities, procedural access to justice requires that attention must be given to the removal of the barriers that prevent them from bringing claims and also those that hinder their effective participation in proceedings meant to enforce rights.56
Third, the symbolic component of access to justice ‘steps outside of doctrinal law and asks to what extent a particular legal regime promotes citizens’ belonging and empowerment’.57 The symbolic component consists of a society in which, due in part at least to its laws and justice system, disadvantaged individuals are fully included and empowered to participate as equal citizens.58 In relation to persons with disabilities, the symbolic component of access to justice involves consideration of what ‘justice’ actually entails for them outside of the narrow confines of the legal system to incorporate the political, social and cultural activities which further their participation and recognition as equal citizens.
In practice, persons with disabilities have often been denied access to fair and equal treatment before courts, tribunals, law enforcement officials, prison systems and other bodies that make up the justice system.59 Numerous barriers prevent them from accessing justice on the same footing with others.60 These include, amongst others, laws denying persons with disabilities legal standing, inadequate information or advice, insufficient resources, inaccessible architectural design, inaccessible information or communication methods and inadequate protection from victimisation. Such barriers limit not only the ability of persons with disabilities to use the justice system, but also their ability to contribute to the justice system, specifically, and to society, generally.61
The above notwithstanding, international human rights law recognises the right of access to justice in several instruments that predate the CRPD.62 For example, article 8 of the Universal Declaration of Human Rights (UDHR) provides that ‘everyone has the right to an effective remedy by the competent national tribunals for acts violating the fundamental rights granted him by the constitution or by law’. The International Covenant on Civil and Political Rights (ICCPR) in article 14 provides that ‘all persons shall be equal before the courts and tribunals’. Article 14(2)(f) of the ICCPR states that, with respect to criminal proceedings, every person has the right ‘to have the free assistance of an interpreter if he cannot understand or speak the language used in court’.63 Further, in article 16 the ICCPR provides that ‘everyone shall have the right to recognition everywhere as a person before the law’ which entails that legal capacity is an inherent attribute of all human beings.
The CRPD, however, is the first international human-rights instrument that specifically enshrines a right of access to justice for persons with disabilities.64 In doing so, the CRPD has expanded the classical notions of access to justice and emphasised the fact that access to justice entails not only removing barriers to ensure access to legal proceedings
to seek and obtain appropriate remedies on an equal basis with others, but also the promotion of the active involvement and participation of persons with disabilities in the administration of justice’.65
The manner in which access to justice has been recognised, in many international instruments, demonstrates that it is a right that must never be understood in isolation. Access to justice must be understood together with other human rights like the right to a fair hearing, the right to equality and the prohibition of discrimination, amongst other rights. Specifically in relation to the CRPD, this means that access to justice for persons with disabilities must always be understood together with the other rights in the CRPD.66 This is because access to justice, as conceptualised under the CRPD, is a cross-cutting right that must be interpreted in line with all the principles and obligations underlying the CRPD.67
Practically, access to justice for persons with disabilities coalesces around three key components and these are: equality before courts and the right to fair trial; the right to an effective remedy; and participation in the administration of justice.68 Each of these three components in turn implicates other demands. First, equality before the courts and fair trial requires that effort be made to ensure that persons with disabilities can physically access institutions critical for the realisation of their rights, but also that they are guaranteed effective access to information and means of communication necessary for them to know and defend their rights. It also requires that provision be made for procedural and age appropriate accommodation within the justice system. Equality before courts and fair trial also demand that persons with disabilities be guaranteed the right to claim justice and stand trial, and to benefit from the presumption of innocence on the same footing as everyone else and be accorded legal aid as appropriate.
Second, the right to an effective remedy for persons with disabilities entails that equal and effective access to justice be guaranteed by, amongst other things, securing the availability and accessibility of complaint mechanisms, investigation bodies and institutions which include judicial bodies that can make authoritative determinations and award reparations. It also encompasses adequate, effective and prompt redress and reparations for harm suffered, and access to relevant information concerning violations and reparations.69
Third, participation in the administration of justice requires that persons with disabilities be guaranteed the right to participate directly or indirectly at all stages of proceedings. Direct participation occurs when persons with disabilities are parties to the action while indirect participation is when persons with disabilities take other roles in proceedings, for example, as witnesses, jurors, lawyers or judges. Against this background, it is clear that guaranteeing access to justice for persons with disabilities often requires a serious rethinking of many aspects of the justice system. 70
4 Exploring access to justice challenges and opportunities for persons with disabilities in Malawi’s criminal justice system
The criminal justice system refers to the collective of institutions through which a person passes until the allegations against him/her have been processed.71 The criminal justice system consists of three main components and these are: law enforcement (the police); adjudication (judges, lawyers, prosecutors, magistrates); and correctional facilities (prison officials and probation officers).72 A contemporary view of the criminal justice system also includes victims and services available to them as another component.73 The agencies that make up the criminal justice system are independent of each other, but must operate together to ensure the prevalence of the rule of law.
raises multidimensional barriers from physical access to courthouses, to ensuring that people with various disabilities are accommodated by materials in alternative formats, making court websites accessible for persons who use assistive technology, and installing listening systems in court houses.74
Access to justice for persons with disabilities is both a means as well as an end.75 It is a means because it is the vehicle that provides persons with disabilities with an opportunity to realise their rights. It is an end because it can be used to avail individuals with the relevant procedures, institutions and processes that recognise, protect and enforce human rights.
Malawi’s criminal justice system, obviously, is quite wide and incorporates many institutions. It is not feasible to conduct an analysis of the entire system within the confines of the present paper. Resultantly, the analysis herein focuses on the roles of the police and the courts. Further, the analysis focuses on the three components of access to justice earlier identified, which are: equality before the courts and the right to fair trial; right to an effective remedy; and participation in the criminal justice system. Each of these will now be addressed individually.
Article 13(1) of the CRPD specifically requires states parties to ‘ensure access to justice for persons with disabilities on an equal basis with others’. This entails that persons with disabilities should be availed all rights and procedural safeguards during pre-trial, trial and post-trial phases of proceedings.76 As the examples below demonstrate, persons with disabilities in Malawi face challenges due to lack of accessibility of and access to relevant information and failures to provide procedural accommodation.
For example, once a person has been arrested section 20A of the CPEC requires that the police must promptly inform the person of the fact that he has been arrested and also inform him/her of his/her rights as an arrested person.77 If the person arrested is a child, additional safeguards for his/her well-being are provided in section 20D of the CPEC.78 In all cases, an arrested person must not be subjected to ‘more restraint than is necessary to prevent’ his/her escape.79
One question that immediately emerges with regard to these provisions relates to the mode of communication that must be used in informing an arrested person of the fact of his arrest and his rights. On this point, it is clear that the CPEC has assumed that all arrested persons can be communicated to using the same means of communication. The result is that if the police were faced with a suspect who has both visual and hearing disabilities, they would have no guidance from the CPEC in terms of how to communicate the fact of the arrest and the rights of the arrested person. The provision of sign language, for example, would be dependent on the initiative and goodwill of the arresting officer. While the CRPD and the Disability Act require reasonable accommodation to be extended to any persons with disabilities in the situation just described there is nothing in the CPEC from whence a duty to extend accommodation could be premised. This shortcoming is particularly perilous since the CPEC is the primary statute governing the pre-trial and trial handling of all suspects.
It should also be noted that the police are empowered to search people that they arrest and take over for safekeeping any items in the suspect’s custody other than necessary wearing apparel. 80 From experience, what this entails is that the police will remove everything from the person of the suspect including belts, shoes, wallets and anything else that they deem could be used to assist escape or could be used in the commission of other crimes while in custody. In so far as the mode for conducting searches is concerned, a search on a woman must be conducted by a woman and the converse is applicable for men.81 Searches must, however, be conducted with due regard to decency.
The manner in which the police are empowered to conduct searches, as per the CPEC, offers no guidance in terms of how they must deal with persons with various disabilities. Following the procedure for conducting searches as prescribed by the CPEC, it is possible that persons with disabilities using assistive devices could have the same taken away from them while they are being put under custody. This would leave such persons vulnerable to further violations of their rights.
In so far as equality and fair trial are concerned, it is important to recall that in disability-rights discourse, language and terminology matter significantly. This is because the terms and labels that have been used in connection with persons with disabilities, have in turn tended to colour peoples’ perceptions of persons with disabilities and also determining what rights to accord them.82 Some of the terms employed in Malawian criminal law, are pejorative, unpleasant and demeaning for persons with disabilities.83 Such language is not in conformity with the CRPD as well as the Disability Act. By way of example, section 139 of the Penal Code provides as follows:
Any person who, knowing a woman or girl to be an idiot or imbecile, has or attempts to have unlawful carnal knowledge of her under circumstances not amounting to rape, but which prove that the offender knew at the time of the commission of the offence that the woman or girl was an idiot or imbecile, shall be guilty of a felony and shall be liable to imprisonment for fourteen years. (emphasis provided)
The Merriam-Webster Online Dictionary defines ‘imbecile’ as ‘a fool’ or ‘idiot’ and ‘idiot’, as ‘a person affected with extreme mental retardation’. These meanings are indicative of the connotations that these words have in normal parlance.
While section 139 of the Penal Code may have been aimed at providing protection from sexual abuse for persons with intellectual disabilities, the language used is inexcusable. The language is demeaning to persons with disabilities and also, in its formulation, it is incapable of accommodating differences and diversity among persons with intellectual disabilities. Such language may also negatively influence the manner in which other actors deal with persons with disabilities. Such language gives a negative perception of the victim while at the same time diminishing the seriousness of the offence. 84
It should also be noted that under section 11, the Penal Code stipulates that every person is presumed to be of ‘sound mind’ until the contrary is proved. Section 12 of the Penal Code permits the defence of ‘insanity’ for persons suffering from diminished responsibility. Further, section 214A of the Penal Code, dealing with diminished responsibility for murder and manslaughter, provides as follows:
Where a person kills or is party to the killing of another, he shall not be convicted of murder if he was suffering from such abnormality of mind, whether arising from a condition of arrested or retarded development of mind or other inherent cause induced by disease or injury, as has substantially impaired his mental responsibility for his acts in doing or being a party to the killing. [emphasis provided]
The observations made in respect of section 139 above are equally applicable to sections 11, 12 and 214A of the Penal Code. Terms such as ‘abnormality of mind’, ‘arrested development of mind’ and ‘insanity’ are not consistent with the social model of disability which Malawi embraced by passing the Disability Act and ratifying the CRPD. These terms are loaded with prejudice about disability and may compromise the perceptions and actions of actors dealing with persons with disabilities in the criminal justice system.85
Perhaps the most glaring omission with regard to the provisions regulating the manner in which police officers must deal with persons with disabilities during and subsequent to arrest is the absence of provisions requiring the police to facilitate access to support services for persons with disabilities. Admittedly, the diversity of disability necessitates different support services. However, in all cases involving persons with disabilities it is important that the police facilitate access to support services to enable persons with disabilities to be dealt with in a manner that respects their rights.86 It is hard to imagine, by way of example, how the police can conduct a human-rights compliant interview of a person with intellectual or psychosocial disability without extending necessary support services to such a person. The absence of any law on this point entails that persons with disabilities are not guaranteed access to support services when dealing with the police. 87
All the above notwithstanding, it must be conceded that the rather bland provisions governing the conduct of searches, for example, are capable of being employed to preserve the rights of persons with disabilities. For example, a creative interpretation of section 23(3) and 23(4) of the CPEC supports the conclusion that any search should proceed only if reasonably required and, under section 26 of the CPEC, any search must be conducted ‘with strict regard to decency’. Such an interpretation, coupled with proper training for law enforcement officers, would ensure that the conduct of searches upholds the rights of persons with disabilities. The challenge with the current situation, however, is its unpredictability. Whether rights of persons with disabilities are respected during a search, for example, depends on the conduct of the police officer on the scene and not because of clear prescription of law.
Overall, the interaction between the police, whether as investigators or prosecutors, and persons with disabilities in Malawi is complicated by the fact that the Malawi Police Service (MPS) does not have standardised procedures for dealing with persons with disabilities.88 There is no mandatory training in disability rights both during recruitment as well as after recruitment. The treatment of persons with disabilities who come into conflict with the law, therefore, remains largely dependent on the competences and skills of the officer on the ground.
Equal and effective access to justice remains critical to persons with disabilities. This includes available and accessible complaint mechanisms, investigative bodies and institutions, including independent judicial bodies capable of determining and awarding reparations; and adequate, effective and prompt redress and reparation for harm suffered. Equal and effective access to justice also covers access to relevant information concerning violations and mechanisms for reparations.
In relation to the right to an effective remedy, it should be recalled that the first engagement that one has with the criminal justice system is often through contact with the police as a victim, suspect or witness. For many people, this is often a novel experience. Aside from the novelty of the first time engagement, persons with disabilities face additional challenges when dealing with the police.89 For example, disability is a major risk factor when assessing vulnerability to torture, cruel, inhuman or degrading treatment or other forms of abuse.90 Persons with disabilities are thus more exposed to violations of their rights when they come into contact with the police than members of the larger population.
In respect of the above, several points can be noted. First, and as earlier pointed out, an arrest in Malawi must follow section 20 of the CPEC. While section 20 of the CPEC requires an officer to actually touch or confine the person to be arrested, force can only be used if the suspect resists and it must be commensurate to the exigency. If a person is charged with a criminal offence arising out of a lawful arrest in which force was used, a court determining whether the necessary degree of force was used may have regard to the gravity of the offence which was being allegedly committed by the person and the circumstances of the offence. Further, under section 28 of the CPEC a police officer may, without warrant, arrest a person whom he finds loitering in any highway or place during the night who he suspects has committed a felony or is about to commit a felony.91 The power to arrest without a warrant extends to cover any person considered to be a vagabond or habitual thief or a person who fails to give a satisfactory account of himself/herself. 92
At first glance these provisions seem neutral and without any particular implications for persons with disabilities. Close scrutiny, however, reveals some of the challenges that persons with disabilities may encounter when the law is applied to them. By way of example, while a standard arrest requires ‘touching and confinement’, this may not be very straightforward where the person to be arrested has severe walking disability and is confined to a wheelchair. Further, the provisions on making an arrest offer no guidance on how a police officer must, for example, deal with persons having intellectual and psychosocial disabilities. If, by way of illustration, a person suffering from psychosocial disabilities being arrested is deemed to be resisting arrest, force is likely to be used on him/her. There is nothing in the law that guides the police to factor in disability-related concerns when effecting arrests.
The absence of explicit guidance on how to handle persons with disabilities during arrest, entails that the arresting officer is left with discretion to improvise in dealing with persons with disabilities. This can bring about contradictory results depending on whether the officer involved is well versed in disability rights or not. On the one hand, this could be an opportunity if the officer is familiar with protocols for dealing with persons with disability. On the other hand, in the case of an officer unfamiliar with disability rights, this poses challenges for persons with disabilities and may lead to violation of rights.
Second, procedures incidental to the commencement of criminal proceedings also deserve mention. For example, under section 85 of the CPEC ‘every summons’ issued by a court ‘shall be in writing, in duplicate, signed and sealed’ by an officer of the court. The summons must also contain a statement of the offence with which the person is charged and the particulars thereof. In terms of service of summons, section 87 of the CPEC directs that summons must be served personally by a police officer, an officer of the court or other public servant and a person receiving the summons is required to acknowledge service by signing the duplicate of the summons. Failure to attend court after a summons has been issued exposes the person summoned to a fine. Additionally, in preparing a charge sheet, section 126 of the CPEC directs that every charge must contain a statement of the offences alleged together with particulars of the offence. The detailed rules for framing charges are contained in section 128 of the CPEC and these emphasise the need to use precise language when preparing charges. By way of illustration, section 128(a)(ii) provides that the statement of offence shall be ‘short and shall describe the offence in ordinary language’ while section 128(a)(iii) provides that ‘after the statement of offence, particulars of such offence shall be set out in ordinary language’.
The commencement of criminal proceedings is notable for its emphasis on writing and the use of ‘ordinary language’. This emphasis, if applied rigidly, may result in marginalisation of persons with disabilities within the criminal justice system. While the CPEC has not defined what is meant by ‘ordinary language’, practically, this refers to English. Admittedly, the use of English in Malawian courts affects not only persons with disabilities, but also many Malawians who are not conversant with the language.93 Nevertheless, for persons with disabilities this is a further burden considering the other disadvantages that they have to endure.
The procedure for framing of charges, it is argued, has made no provision for accommodating the various disabilities that accused persons may have. The assumption seems to be that crafting charges in ‘ordinary language’ is sufficient to ensure effective communication to everyone. There is no statutory requirement directing that charge sheets and summons be prepared in formats that accommodate the needs of persons with disabilities. Additionally, the service of summons is also straight-jacketed and makes no accommodation, for example, for service on persons with visual disabilities or other disabilities that may make reading a challenge. Nevertheless, if a person with disabilities fails to attend court upon being summoned, he/she may be condemned to pay a fine. It is ironic that a sanction can be imposed even when non-compliance with the summons may be for reasons that are structurally embedded in the criminal justice system itself.
Under the CRPD, for persons with disabilities to have access to justice on an equal basis with others, they must be able to participate directly or indirectly at all stages of proceedings.94 Direct participation refers to those instances where a person with disability acts as a claimant or defendant or in any other capacity as a party to the proceedings. Indirect participation refers to other roles that contribute to the administration of justice such as a witness, expert, juror or judge.
There are several provisions relating to the conduct of criminal trials that raise red flags for persons with disabilities. For example, section 138 of the CPEC allows a court to proceed with a trial or committal proceedings even where the accused does not understand the proceedings as long as he/she is not insane. ‘Insanity’, it seems, is the only condition that would necessitate stopping proceedings and adopting a different procedure.95 It defies reason why a court would proceed with a trial even when the accused does not understand proceedings. This provision is also oblivious to the fact that there is a range of disabilities that may challenge a person from following a trial conducted in the traditional manner and not just ‘insanity’. Effective participation by persons with disabilities in judicial proceedings requires that a trial should only proceed when the accused can confirm that he/she is following the proceedings.
Further, section 163 of the CPEC provides for the manner in which evidence must be recorded during a trial. According to this section, all evidence must be ‘in writing in the language of the court’ or in the presence a presiding officer under his direction and superintendence. Under section 164 of the CPEC, if the evidence is given in a language that is not understood by the accused, it must be interpreted into a language that can be understood by him/her. Additionally, section 211 of the CPEC allows a witness who is ‘unable to speak’ to give his/her evidence in any manner in which he can make it intelligible by writing or signs. Upon the conclusion of a trial, an accused person is also entitled to a copy of the court’s judgment ‘in a language he understands’.96
From the perspective of participation in the criminal justice system by persons with disabilities, three things can be noted. First, the language of the court in Malawi is English and all court records are prepared in English.97 There is no provision to record the evidence or translate a judgment into, for example, braille or any other medium. Second, section 211 of the CPEC, though supposedly directed at ‘dumb witnesses’, can be utilised to accommodate witnesses who have a speech disability by permitting them to employ, for example, sign language in giving their evidence. Third, the law requires that evidence must be translated into a language that can be understood by an accused person and that a copy of the judgment, upon request, should be given to an accused person in a language that he/she understands. Since the law has not limited the language into which a judgment or evidence must be transcribed, under a broad interpretation of these provisions, courts are at liberty to facilitate translation of a judgment or the court record into braille or other forms of communication accessible to persons with disabilities. However, the failure to have the above suggested measures of accommodation embedded in the law entails that persons with disabilities would be hard pressed to demand such accommodation where the court is not amenable to providing them.
It should also be noted that jury service in Malawi exempts persons with ‘mental infirmity’.98 The CPEC has not defined ‘mental infirmity’ but, as earlier pointed out, this type of language is demeaning. It is also language that is very woolly and incapable of accommodating a diversity of intellectual disabilities. It overgeneralises lack of legal capacity for persons with intellectual disabilities. It presumes, rather broadly, that persons with intellectual disabilities are completely incapable of making intelligible decisions.
Under section 93 of the CPEC, the Chief Justice is empowered to make rules for the better conduct of all criminal proceedings in Malawi. Further, under section 367 the Chief Justice may, by notice published in the Gazette, prescribe forms that are to be used in criminal proceedings in Malawi. Two points can be noted here. First, the Chief Justice can utilise section 93 to adopt rules that can transform the CPEC into a disability rights-compliant code. Second, all the prescribed forms under the CPEC are in English and there is no obligation to ‘translate’ them into a format that can be accessible to various persons with disabilities. Nevertheless, utilising the power under section 93, the Chief Justice can remedy this shortfall by prescribing forms that accommodate various disabilities. There is, therefore, embedded within the CPEC opportunity for making Malawi’s criminal procedure more aligned with principles in the CRPD and Disability Act.
In so far as the Penal Code is concerned, section 3 can be used to generate disability rights compliant interpretations of the criminal law. Section 3 provides that the Penal Code ‘[s]hall be interpreted in accordance with the principles of legal interpretation that - take full account of the principles and provisions enshrined in the Constitution’. While this provision does not give the court carte blanche, it is a provision that can be utilised to deduce disability compliant interpretations of the penal law. Crucially, the Constitution is very emphatic on human rights. By constantly factoring its stipulations into the interpretation of all criminal law, therefore, courts can, even without legislative intervention, ensure that the criminal law is applied in a manner that fully accords with the rights of persons with disabilities. Similarly, from a procedural perspective, section 3 of the CPEC is relevant and can be used to enhance access to justice for persons with disabilities. Section 3 stipulates that the principle that substantive justice should be done without undue regard for technicality shall at all times be adhered to in applying the CPEC. This provision can be used to lessen the hardship that some provisions of the CPEC may impose on persons with disabilities by allowing courts to focus on substantive justice rather than technical procedural aspects.
The major challenges in Malawi’s criminal justice system, so far as persons with disabilities are concerned, stem largely from the fact that the key statutes undergirding the system predate the CRPD, the Disability Act and the Constitution. Resultantly, these statutes were not explicitly crafted to accommodate rights of persons with disabilities. In line with article 4(1)(b) of the CRPD, therefore, the obligation on Malawi is to either modify these laws or adopt new laws to make the criminal justice system compliant with the rights of persons with disabilities.
In so far as, for example, the language employed in some of the statutes is not compliant with the principles in the CRPD, the Disability Act and the Constitution, such situations require amendment of the law. In other instances, however, and pending the adoption of the necessary amendments, courts can adopt creative interpretations of existing laws to support the rights of persons with disabilities. Addressing the deficiencies in the criminal justice system by way of interpretation requires a concession that the ratification of the CRPD and the adoption of the Disability Act have created a need to realign all laws in Malawi in line with the rights of persons with disabilities. Crucially, it also presupposes the presence of competent criminal justice sector personnel in all the relevant agencies to undertake this task.
To illustrate the above, section 139 of the CPEC requires a court to pronounce the substance of every judgment in court in the presence of the accused person and upon request to read the entire judgment in court. While this section has not made provision for accommodating persons with hearing disabilities, a court, relying on the CRPD, the Disability Act and the Constitution, can nevertheless proceed to provide sign language interpretation in delivering its judgment. Additionally, under section 99 of the Child Care, Protection and Justice Act, a preliminary inquiry must be held in respect of any child suspected of being responsible for a crime before plea is taken. Even though this section does not refer to disability, it is sufficiently broad to allow a child justice court to accommodate disability related issues in processing a suspected child offender. In the main, therefore, barring the amendment to key statutes in the criminal justice system, courts applying the principle of reasonable accommodation can still make substantial progress in realising the rights of persons with disabilities. Against this background, this section of the paper presents some proposals for improving Malawi’s criminal justice system in order to align it with the rights of persons with disabilities.
The social model of disability requires a holistic understanding of persons with disabilities and their right to access justice. In Malawi, and specifically in relation to the criminal justice system, a thorough disability rights-focused audit of all laws having a bearing on the criminal justice system is a must. The audit must identify all laws that negatively affect the rights of persons with disabilities. Such an audit would form the basis on which recommendations for either repeal of laws or for further training of criminal justice actors can be conducted. In line with the principle of full and effective participation, such an audit must involve persons with disabilities and their representative organisations so that the ways in which the various laws affect persons with disabilities can be properly articulated and factored into the audit.
The examples discussed earlier, from the CPEC and the Penal Code, confirm that the language used by Malawi’s criminal law is, in certain aspects, archaic and not consonant with the rights of persons with disabilities. To rectify this situation, there is need to amend all such statutes to make them compliant with the CRPD, the Disability Act and the Constitution. To ensure that rights of persons with disabilities are fully accommodated in this process, however, it is important to precede the amendment of laws by the audit that has earlier been referred to. For the avoidance of doubt, amendment of laws must not simply target the language in the laws, but also the procedures that do not accommodate the rights of persons with disabilities.
According to a recent study, the dearth of knowledge about disability rights within the justice sector in Malawi is pervasive and overwhelming.99 This emphasises the need for appropriate training of all actors in the justice sector. Police officers, magistrates, lawyers, judges and court clerks all require training on disability rights. In the case of police officers, for example, they must be trained in, amongst other things, how to process persons with various disabilities during investigations and when conducting arrests. Magistrates and judges must be trained on the way in which courtroom procedures can uphold rights of persons with disabilities. Clerical staff working with the courts must also be trained to deal with persons with disabilities in a manner that respects their rights.100 Lawyers must also be trained on the specific nuances involved in litigating disability rights cases. Overall, therefore, all programmes designed to strengthen the criminal justice system must include a disability component. 101
It is commendable that Malawi ratified the CRPD. However, considering the dualist nature of its legal system, it is important that steps be taken to domesticate the CRPD. Domestication would be the clearest indication of Malawi’s commitment to uphold the CRPD. Domestication would also provide Malawi with an opportunity to reflect on disability issues that are specific to Malawi and hence requiring concerted local effort.102 To bring full meaning to the domestication, it would also be important for Malawi to ratify the Optional Protocol to the CRPD. Ratification of the Optional Protocol would enhance available avenues for potential litigants in relation to rights under the CRPD by adding the Committee on the Rights of Persons with Disability to the possible fora that one could approach. Further, and in tandem with domestication of the CRPD, it is also important for the government to support programmes designed to generate public awareness about the CRPD. Specifically in relation to access to justice, domestication would enhance clarity about the access to justice for persons with disabilities seeing as the Disability Act does not have an explicit provision on the same.
Members of the legal profession remain key in facilitating access to justice for persons with disabilities, but they may have no understanding or may lack the skills necessary to interact with people who have disabilities.103 Generally, lawyers receive no formal training in law school for dealing with persons with disabilities. Institutions training lawyers, therefore, must have dedicated courses dealing with disability rights in order for lawyers to properly fulfil their role in facilitating access to justice for persons with disabilities. In this connection, therefore, the fact that the University of Malawi, which remains the sole local institution for training lawyers, has over the past eight years been teaching disability rights as part of its human rights curriculum is commendable. 104
Systematic training of legal professionals in disability rights can create a cadre of legal professionals capacitated to deal with various disability rights issues. While the training of legal professionals is important, to improve access to justice for persons with disabilities, it is also important to take steps that can increase the enrolment of persons with disabilities in institutions that train legal professionals. On this score, the University of Malawi has, historically, not done very well.105 It still lacks facilities for ably supporting persons with, for example, visual or hearing disabilities. The result is that it has graduated a negligible number of persons with visual and hearing disabilities. In order to improve this situation, the University of Malawi needs to systematically dismantle the barriers that have traditionally prohibited persons with disabilities from training as lawyers. This would also require that serious attention be paid to schemes of reasonable accommodation that could assist learners with disabilities when they enrol with the University. The fact here is that law schools are vehicles for potential change with respect to disability rights and it is important that this potential must be harnessed.
Although Malawi ratified the CRPD and adopted the Disability Act, this by itself has not led to an amelioration of the rights of persons with disabilities. Clearly, therefore, ratification of international instruments and adoption of policies and statutes will count for nothing unless deliberate effort is expended in implementing the policies and laws.
In terms of the criminal justice system and access to justice for persons with disabilities in Malawi, this paper has demonstrated that there are several areas requiring improvement if the rights of persons with disabilities are to be fully realised. In some instances, all that is required is the implementation of reasonable accommodation measures through creative interpretation of the existing laws while in other instances, amendment of the laws may be necessary. However, to proceed systematically with either the amendments or reasonable accommodation measures, it is important to conduct a full audit of the laws having a bearing on the criminal justice system so that the problematic areas are identified and isolated. Further, it is also important to conduct disability rights training for all actors in the criminal justice system and to include disability rights training as part of the curricula in law schools. Finally, it remains very important for Malawi to domesticate the CRPD and ratify the Optional Protocol. Considering the breadth of the criminal justice sector in Malawi, the analysis in this paper has simply been indicative of the issues and possible solutions.
3. Open Society Initiative for Southern Africa Status of disability rights in Southern Africa (2012) 12; J Nyanda ‘Confronting the double marginalisation of girls with disabilities: Practical challenges for the realisation of the right to education for girls with disabilities under the Disability Act of Malawi’ (2015) 3 African Disability Rights Yearbook 112.
5. UN Treaty Collection, CRPD https://treaties.un.org/Pages/ViewDetails.aspx?src= IND&mtdsg_no=IV-15&chapter=4&lang=en (accessed 16 August 2017). Malawi has neither signed nor acceded to the Optional Protocol to the CRPD.
7. Disability terminology is often highly contested. Some of the commonly used terms are: ‘people with disabilities’; ‘disabled people’; ‘people with impairments’; and more specific terms like ‘visually impaired people’; and ‘people with intellectual disabilities’. The varying terms, however, are often reflective of the differing perspectives about disability - E Iriarte et al ‘Disability and human rights: Global perspectives’ in E Iriarte, R McConkey & R Gilligan (eds) Disability and human rights: Global perspectives (2016) 8.
8. This Protocol was adopted on 29 January 2018. To date it has garnered six signatures, but zero ratifications - https://au.int/sites/default/files/treaties/36440-sl-PROTO COL%20TO%20THE%20AFRICAN%20CHARTER%20ON%20HUMAN%20AND%20PEOPLES’%20RIGHTS%20ON%20THE%20RIGHTS%20OF%20PERSONS%20WITH%20DISABILITIES%20IN%20AFRICA%20%281%29.pdf (accessed 10 April 2020).
10. Government of the Republic of Malawi ‘Combined initial and second report to the Committee on the Rights of Persons with Disabilities’ http://disabilityrightsfund.org/resources/malawi-state-report-crpd/ (accessed 4 March 2020) para 79.
11. E Flynn & A Lawson ‘Disability and access to justice in the European Union: Implications of the United Nations Convention on the Rights of Persons with Disabilities’ (2013) 4 European Yearbook of Disability Law 7 at 7-8.
13. Australian Human Rights Commission ‘Equal before the law: Towards disability justice strategies’ http://www.humanrights.gov.au/our-work/disability-rights/publications/equal-law (accessed 24 August 2017).
14. Government of Malawi (n 10) para 7. The 2008 national census was the first time in Malawi’s history that questions relating to disability were included, see, National Statistical Office ‘2008 population and housing census’ http://www.nsomalawi.mw/index.php?option=com_content&view=article&id=106&Itemid=6 (accessed 23 Aug-ust 2017). The 2018 national census also included a disability component, see, http://www.nsomalawi.mw/index.php%3Foption%3Dcom_content%26view%3Darticle%26 id%3D226:2018-malawi-population-and-housing-census%26catid%E2%80%89%3D% E2%80%898:reports%26Itemid%E2%80%89%3D%E2%80%896 (accessed 29 Febru-ary 2020).
15. See, for example, A Munthali A situation analysis of persons with disabilities in Malawi (2011) 7. As for a study on access to justice for persons with disabilities, but specific to children with disabilities and in relation to the crime of defilement, see B Malunga, NR Kanyongolo & N Mbano-Mweso ‘Access to justice of children with disabilities in defilement cases in Malawi’ (2017) 5 African Disability Rights Yearbook 25’ http://www.adry.up.ac.za/index.php/section-a-articles-2017/bernadette-malunga-ngeyi-ruth-kanyongolo-ngcimezile-mbano-mweso (accessed 6 March 2020).
17. Chapter 8:01, Laws of Malawi. Under sec 6(2) of the CPEC all criminal offences under any written law in Malawi must be tried under the procedures established in the CPEC unless there is a law which establishes otherwise.
26. Iriarte (n 7) 12 and W Waliuya ‘Protecting the rights of persons with disabilities: A perspective from Zambia’ http://www.southernafricalitigationcentre.org/1/wp-content/uploads/2014/12/11.pdf (accessed 25 August 2017).
35. Although sec 13(g) is part of the principles of national policy, courts in Malawi are enjoined, under sec 14 of the Constitution, to have regard to sec 13 in interpreting and applying any of the provisions of the Constitution.
45. This paper is fully aware of the fact that generalisations about disability can be misleading and where appropriate its conclusions will be qualified to limit their applicability to particular disabilities.
46. It is also useful to point out that in spite of the diversity of disabilities, persons with disabilities share a common history of stigma, discrimination and segregation the world over - Lord & Stein (n 29).
50. OHCHR ‘Right to access to justice under article 13 of the Convention on the Rights of Persons with Disabilities’ https://www.google.mw/url?sa=t&rct=j&q=&esrc=s& source=web&cd=2&ved=2ahUKEwjxgMHy7YboAhXJyYUKHax3CVkQFjABegQIDBAF&url=https%3A%2F%2Fwww.ohchr.org%2FDocuments%2FIssues%2FDisability%2FA_HRC_37_25.docx&usg=AOvVaw3zYy3xVLP2yE-vHxjq_cN8 (accessed 1 March 2020).
51. R Bahdi ‘Background paper on women’s access to justice in the MENA region’ http://www.uwindsor.ca/law/rbahdi/sites/uwindsor.ca.law.rbahdi/files/womens_access_to_ justice_in_mena-bahdi_en.pdf (accessed 17 August 2017).
62. See also, art 7 of the African Charter on Human and Peoples’ Rights, Malawi ratified this instrument on 17 November 1989 http://www.achpr.org/instruments/achpr/ratification/ (accessed 7 September 2017).
63. Ortoleva argues that this provision creates a basis for the adoption of reasonable accommodation measures for persons who have hearing impairments or visual impairments to use sign language or braille, respectively, in court proceedings: Ortoleva (n 12) 293.
72. K Daly & R Sarre ‘Criminal justice system: Aims and processes’ https://www.griffith.edu.au/__data/assets/pdf_file/0011/924878/2017-Daly-and-Sarre-Criminal-Justice-System-FINAL-23-Oct-2016.pdf (accessed 17 August 2017).
83. Cf P Manatsa ‘Are disability laws in Zimbabwe compatible with the provisions of the United Nations Convention on the Rights of Persons with Disabilities (CRPD)?’ (2015) 4 International Journal of Humanities and Social Science Invention 27.
85. Other provisions that highlight the same problem include sec 211 of the CPEC which refers to a witness who is ‘unable to speak’ as ‘a dumb witness’ and sec 32(4) which refers to ‘mental infirmity’ as a condition that police officers must consider before releasing a suspect with a caution.
87. For example, under sec 32A(4)(d), CPEC, a police officer may, upon effecting an arrest, caution the suspect and release him/her. One of the conditions that the police officer may consider in determining whether to release the suspect or not is the ‘mental infirmity’ of the suspect. While the language of the provision is certainly archaic, it is an example of a provision that can be utilised to accommodate persons by diverting them from the mainstream criminal justice system depending on the allegation against them.
90. Report of the Office of the High Commissioner for Human Rights ‘Expert seminar on freedom from torture and ill-treatment and persons with disabilities’ (11 December 2007) http://www2.ohchr.org/english/issues/disability/docs/torture/seminartorture reportfinal.doc (accessed 22 August 2017).
92. Sec 29, CPEC. The power to arrest persons considered to be vagabonds, habitual thieves or those that fail to give a satisfactory account of themselves must now be understood in the light of the decision in Mayeso Gwanda v The State Constitutional Cause 5 of 2015, where the High Court found sec 184(1)(c) of the CPEC to be unconstitutional.
97. Shorthand notes and electronic records may be made of proceedings at trial, sec 365, CPEC and a copy thereof may be given to any person affected by the judgment, sec 366, CPEC. This mode of capturing proceedings still excludes many persons with disabilities especially those with visual and hearing impairments.
100. Currently, court clerks and interpreters in Malawi are not specifically trained to deal with persons with disabilities. For example, if there is need for sign language translation a decision must be made to find a translator but the judiciary does not have such translators - Author interview with former Registrar of the High Court and Supreme Court of Malawi, Joseph Chigona, 24 August 2017. Translation of records into braille also would require outsourcing.
- Shirley Genga
- Assistant lecturer (Jomo Kenyatta University of Agriculture and Technology)
- LLB (University of Nairobi); LLM in Public International Law (University of Nairobi); PhD student (The University of the Witwatersrand)
- S Genga ‘The link between the right to live independently and to be included in the community for persons with psychosocial disability, and the right to work and employment: A critical analysis of Kenyan law’ (2020) 8 African Disability Rights Yearbook 101-123
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The right to live independently and to be included in the community is especially important for persons with psychosocial disabilities as they often find themselves isolated from the community. This paper will delve into what the right to live independently in the community means for persons with psychosocial disabilities. Specifically, it will discuss the link between the right to work and employment, and the right to live independently and in the community. In fact, it will make the argument that if the Kenyan legal framework does not adequately protect the right of persons with psychosocial disabilities to work and employment, then it has failed to protect the right of persons with disability to live independently and to be included in the community. In order to make a determination, this paper will engage in a critical analysis of the Kenyan legal framework on the right to work.
The history of persons with disability across the world has been one of segregation, isolation and exclusion from full participation in society.1 They have been locked in institutions or in their homes, banned by laws or culture from going out, and routinely denied full citizenship.2 Basically, persons with disability are denied from taking part in community life.3
The effects of institutionalisation and exclusion have been devastating, not just on persons with disability, but also to their families and communities.4 Persons with disability have not only become increasingly invisible to society,5 but social exclusion perpetuates dependency and thus interference with individual freedoms.6 This has resulted in persons with disability being denied their personal and individual choice and control across all areas of their lives. In fact, many have been presumed to be unable to live independently in their self-chosen communities.7
Worth noting, is that psychosocial disabilities are regarded as one of the most stigmatised of all disabilities,8 and thus the segregation and isolation they experience is magnified.9 This paper will use the term psychosocial disabilities to refer to both common and severe mental illness.10 In fact, persons with psychosocial disabilities are amongst the most disadvantaged within the disability movement.11 They experience severe social challenges and continue to be subjected to human rights violations worldwide.12 Their rights to participate and contribute meaningfully in political, legal, social, clinical and personal decisions which impact their own lives have been violated.13
The experiences of discrimination, mistreatment, intolerance and exclusion of persons with psychosocial disability are disturbing.14 This has been facilitated by prejudicial and misguided beliefs that persons with psychosocial disability, unlike say physical disabilities, lack the capacity to make rational and informed decisions.15 Further, because people with psychosocial disabilities do not have access to the basic mental healthcare, support and social services that they may require, they eventually become isolated from the community.16 Accordingly, this isolation and segregation is not just experienced within the community, but even outside and touches every area of the lives of person with psychosocial disabilities, from their right to education, to the right to equal recognition before the law, and even the right to work and employment, just to name a few. For example, persons with psychosocial disabilities experience high rates of unemployment.17 Persons with psychosocial disabilities continue to experience challenges not just in accessing, but also in maintaining employment.18 This is particularly alarming because of the high prevalence of psychosocial disabilities worldwide.19 Yet, the right to work and employment not only reduces poverty, but enables people to become independent, self-sustaining, and to be able to participate equally in society.20 This is the reason that article 19 is so important.21 In fact, it was the resistance to this type of harm caused by isolation and segregation which led to the development of the right of all persons with disabilities to live in the community, with choices equal to others in article 19 of the Convention on the Rights of Persons with Disabilities (CRPD).22
Currently, there is no accurate data and information on the prevalence of psychosocial disabilities in Kenya.23 What is available is the 2019 Kenyan Census which adopted the Washington Group short set of questions on disability in order to collect data on the prevalence of disability in Kenya.24 Nonetheless, one limitation of the short set of questions is that they fail to capture psychosocial disabilities as a disability category. As a result, it is difficult to tell the specific numbers of persons with psychosocial disabilities in Kenya from the data collected. The WHO provides some incite, it provides that mental, neurological and substance use disorders are common and affect more than 25 per cent of all people at some point during their lifetime.25 Furthermore, few studies currently exist that explore the employment of persons with psychosocial disabilities in Kenya.26 It is for this reason that this paper will analyse the legal framework in Kenya that protects the right to work and employment27 and investigate its link to the right to living independently and being included in the community. It will firstly discuss the state of persons with psychosocial disabilities in Kenya. Then, it will delve into the meaning of independent living and what constitutes living in the community as provided by the CRPD, and further, look at how it applies to persons with psychosocial disabilities. Additionally, it will investigate how the right to live independently and, in the community, article 19 of the CRPD, and the right to work and employment, article 27 of the CRPD, are connected. Lastly, it will engage in a critical review of Kenyan legislation that regulates the right to work and employment for persons with psychosocial disabilities and identify whether it is in compliance with article 27. This will be done in order to identify whether the Kenyan legal framework is in compliance with article 19. Specifically, the argument the paper makes is that in failing to adequately protect the right to work and employment for persons with psychosocial disabilities, Kenya has failed to enable persons with psychosocial disabilities to live independently and to be included in the community as provided in article 19.
It is important to note that there are different types of institutions, they vary in size, name and setup the world over.30 The defining elements of institutionalisation include:
[O]bligatory sharing of assistance with others and no or limited influence over by whom one has to accept assistance, isolation and segregation from independent life within the community, lack of control over day-to-day decisions, lack of choice over whom to live with, rigidity of routine irrespective of personal will and preferences, identical activities in the same place for a group of persons under a certain authority, a paternalistic approach in service provision, supervision of living arrangements and usually also a disproportion in the number of persons with disabilities living in the same environment ....31
Institutionalisation is basically a place where people who have been labelled as persons with disabilities are isolated and segregated from life in the community.32 Notably, the institutionalisation and exclusion of persons with disabilities has been shown to cause immense harm to individuals, families and communities.33 For example, apart from preventing persons with psychosocial disabilities from full participation in society, institutionalisation also increases the risk of exploitation, violence, neglect and abuse.34 In Kenya, Mathare Hospital, the biggest psychiatric hospital, and where persons with psychosocial disabilities are sometimes institutionalised, has often been accused of neglect and abuse.35
Additionally, apart from institutionalisation, the rights of persons with psychosocial disability can also be infringed within the community, and specifically by family members.36 In Kenya this occurs where persons with psychosocial disabilities are isolated by their family members within the family home.37 This is often perpetuated by the prevalence of prejudice and stigma, lack of knowledge or understanding of psychosocial disabilities, and further, the state’s failure to provide individualised support services.38 As a result, the majority of persons with psychosocial disabilities, although they may not be institutionalised, continue to live isolated lives within their communities.
As a consequence, the isolation and segregation experienced by persons with psychosocial disabilities within the community is reflected in the rate of employment of persons with psychosocial disabilities. According to an International Labour Organisation report, disabled people in Kenya live in poverty, have limited opportunities for accessing everything from education, to employment opportunities.39 Nonetheless, few studies currently exist that explore the employment of persons with psychosocial disabilities in Kenya.40 What is available does not provide an accurate picture. A report by the Kenyan National Human Rights Commission states that only 3 per cent of persons with disabilities were employed by the government instead of the stipulated 5 per cent.41 Another report by the UN Committee on the Rights of Persons with Disabilities, provides that the employment rate amongst persons with disabilities is about 1 per cent.42 Both reports highlight the fact that employment of persons with disability is particularly low in Kenya. Further, that within the general low rate of employment of persons with disability, the rate of employment for persons of psychosocial disabilities is often lower not just in Kenya, but globally.43 This is because employers often prefer employing persons with physical disabilities over persons with psychosocial disabilities when it comes to meeting employment equity targets.44 In fact a recent study done in Kenya found that mental illness was the highest self-reported barrier to employment opportunities.45
Furthermore, persons with psychosocial disabilities do not only struggle to access employment, but to maintain said employment.46 This is driven by misconceptions about the capacity of persons with psychosocial disabilities to make rational and informed decisions,47 which has further led to misguided assumptions about the abilities and performance of persons with psychosocial disabilities in work or employment.48 So much so, that ‘studies suggest a two-way relationship between psychosocial disabilities and poverty and show how they reinforce each other’.49 Yet, employment for persons with psychosocial disabilities not only plays a critical role in promoting recovery,50 but promotes social acceptance and integration into the community, and gives individuals a sense of purpose, self-esteem, and self-worth.51 In addition, work also reduces poverty and dependence, enabling people to become independent and self-sustaining, and as a result to have more choices and control over their lives, and to live independently.52 Indeed, the Kenyan Labour Court in the case of Patrick Njuguna Kariuki v Del Monte (K) Limited,53 held that every moment of time that an employee works inherently generates satisfaction and the employee’s self-esteem which is a necessary component to the employee’s human dignity beyond mere pay for the employee’s work.
The CRPD was adopted in 200654 and came into force on 3 May 2008.55 It was the first UN convention of this millennium56 and Kenya ratified the CRPD on 19 May 2008.57 By virtue of article 2(6) of the Constitution,58 the CRPD forms part of the laws of Kenya.59 The Constitution states that: ‘Any treaty or convention ratified by Kenya shall form part of the law of Kenya under this Constitution’.60 Undoubtedly, the Convention represents a paradigm shift in the way disability is viewed as it adopts the social model of disability.61 It highlights the role of attitudinal, societal and environmental barriers in hindering disabled persons’ full and effective participation in society on an equal basis with others.62 Prior to the CRPD the existing UN human rights treaties proved to be insufficient in challenging national laws that excluded the rights of persons with disabilities.63 Nevertheless, the purpose of the CRPD was not to create new rights, but to bring clarity on how the existing human rights law relates specifically to persons with disabilities.64
Furthermore, prior to the CRPD, no other human rights instrument contained explicit rights for persons with disability to live independently and in the community as equal citizens.65 The CRPD is the first legally binding human rights treaty to recognise the right of persons with disability to live independently and be included in the community as equal citizens in article 19.66 However, it is not a new right.67 Indeed, the right stems from human rights standards within the United Nations system.68 Particularly, the overarching objective of article 19 of the CRPD is full inclusion and participation in society for persons with disability.69 Its three key elements are: choice;70 support services;71 and community services.72
It has especially been argued that the purpose of the right is to neutralise the devastating effects of isolation and loss of control over one’s life as a result of a society that is not accessible to persons with disability;73 a society that has been rendered inaccessible because of barriers (attitudinal and environmental) to community services, and further no support services designed specifically for persons with disability.74 The solution is therefore in removing the barriers in the society, and also providing access to support services to facilitate independence and participation in the community.75
Living independently for persons with disabilities is defined as: ‘[being] provided with all necessary means enabling them to exercise choice and control over their lives and make all decisions concerning their lives ...’76 It is all about persons with disability demanding the same choices and control in their every-day lives as non-disabled persons have.77 Independent living stresses the importance of personal autonomy and self-determination as fundamental to independent living.78 In addition, it does not mean that persons with disability have to be independent in the sense of living a highly individual and self-sufficient life; or that that persons with disability should be allowed to live alone or have the ability to carry out daily activities.79
In addition, living independently does not mean living at a distance from other people.80 In fact, living independently varies depending on individual situation. For some people, it may mean moving away from their family, while for others it means living with their family.81 What is significant is that the disabled person should have the choice to decide where to stay.82 Additionally, living independently does not mean living without support from the state. Indeed, it means that persons with disability should have access to adequate state support to enable inclusion.83 However, choice and control over the support is an essential pre-condition for independent living.84 In short, independent living for persons with psychosocial disabilities means having choice and control over their decisions, and having access to support services (including personal assistance) offered by the state.85
Then, the right to be included in the community means that persons with disability are able to live in their local communities as equal citizens, with the support that they need to participate in every-day life including everything from cultural life in the community, public meetings, sports events, cultural and religious festivals and any other activity in which the person with disability wishes to participate.86 It is basically being fully included and participating in all spheres of social life,87 namely where persons with disabilities are not only able to live in the community, but are also given the opportunity to participate and contribute.
A key precondition for the right to live independently and be included in the community is the availability of mainstream services and facilities and support to access these services and facilities.88 Significantly, for many persons with psychosocial disabilities it is not enough to provide mainstream services and facilities alone,89 access to a range of individualised support services is an important precondition to enable them to live independently and within the community.90 In fact, the right to live independently and be included in the community may be compromised where support services are not provided.91 Notably, support services are of two types: community support services92 and individualised support systems.93 Furthermore, in the spirit of article 19 even where support services are provided, persons with disability should still retain choice and control.94 This is to ensure that persons with disability despite requiring support still maintain the same choice, control and freedom as any other citizen.95 Hence, article 19 is violated when the support services required by persons with disability are not provided or if when provided, are done in a manner that takes away control and choice from persons with psychosocial disabilities.96 Lastly, It is also important to note that, support services should not only be limited to services inside the home, but should be extended to other areas of a person’s life including everything from education to employment. 97
2.2 The link between the right to work and the right to live independently and be included in the community
Article 19 unlike the other articles found in the CRPD plays a distinct role of being one of the widest ranging and most intersectional articles.98 It is in fact a great example of the interdependence and indivisibility of all human rights.99 This is because it is interrelated with the enjoyment of other human rights provided for in the CRPD100 and, as a result, is considered as integral and central for the implementation of the Convention across all articles.101 It is interrelated to both civil and political as well as economic, social and cultural rights.102 These rights include: consultations with and active involvement of persons with disabilities (article 4(3); non-discrimination (article 5); awareness-raising (article 8); accessibility (article 9); equal recognition before the law (article 12); access to justice (article 13); inclusive education (article 24); health (article 25); habilitation and rehabilitation (article 26); adequate standard of living and social protection (article 28); participation in political and public life (article 29); participation in cultural life, recreation, leisure and sport (article 30); statistics and data collection (article 31); international cooperation (article 32); freedom of expression and opinion (article 21); and access to information, and right to work and employment (article 27).103 Indeed, the right to live independently and be included in the community can only be realised if all economic, civil, social and cultural rights enshrined in this norm are fulfilled104. Therefore, article 19 cannot be fully implemented without implementing other right105s, and vice versa. For example, the right to work and employment is a key right when it comes to implementing article 19. It not only empowers persons with psychosocial disabilities economically, but it enables them to become independent and to participate in the community. The result is that persons with psychosocial disabilities have more choices and control over their lives as is required by article106 19. Thus, addressing, to some extent the fulfilment of other rights, in this case the right to work and employment for persons with psychosocial disabilities as provided in article 27 of the CRPD, is not a diversion but in actual fact addressing articl107e 19.
Therefore, in determining whether Kenya has facilitated or failed to enable persons with psychosocial disabilities to live independently and in the community, it is justified to identify whether the state’s legal framework has sufficiently protected and facilitated the right of work and employment for persons with psychosocial disabilities.
Article 27 of the CRPD constitutes one of the most detailed provisions of the Convention, establishing the legal framework for state obligations in relation to work and employment of persons with disabilities.108 It states that the right for persons with disabilities, in this case persons with psychosocial disabilities, includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.109 State parties are obligated to safeguard and promote the realisation of the right to work for both those who have a disability when employed, and those who may acquire a disability during the course of employment.110 Admittedly, given the fluctuating, chronic and unpredictable nature of psychosocial disabilities, 111 this is particularly of relevance to persons with psychosocial disabilities.
Then it sets out a non-exhaustive list of appropriate steps for state parties to take, in order to safeguard and protect the right to work and employment including through legislation, to safeguard and promote the realisation of the right to work, including for those who acquire a disability during the course of employment.112 Importantly, it covers all stages of employment, from recruitment all the way to career advancement and even the creation of safe and healthy working conditions.113
Further, article 27 places a strong focus on the duty of states parties to prohibit discrimination on the basis of disability114 and also the definition of discrimination115 found within the CRPD makes it an act of discrimination for an employer to refuse to reasonably accommodate an employee with a disability.116 Furthermore, it goes on to widen the scope of the obligation requiring employers to reasonably accommodate persons with disability as more than an anti-discrimination obligation as provided in article 27(1)(a), article 27(1)(i) proceeds to also provide it as a general obligation for employers. Notwithstanding, an employee is only obligated to reasonably accommodate an employee as long as it does not impose a disproportionate or undue burden.117 Additionally, article 27(1)(b) obligates employers to protect the rights of persons with psychosocial disabilities on an equal basis with others, especially as regards 'just and favourable working conditions, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions, including protection from harassment and the redress of grievances'.118
Moreover, in order to help enforce equality and anti-discrimination employees with disability need to be allowed to exercise their labour and trade union rights on an equal basis with others, which is protected under article 27(1)(c). Furthermore, state parties are obligated to promote the work experience of persons with disability in the open labour market.119 Additionally, because the CRPD recognises that employment alone is not the only source of work, it further obligates states in article 27(1)(f) to promote opportunities for self-employment, entrepreneurship and the development of cooperatives and starting one’s own business. Furthermore, article 27(1)(g) and (h) obligates states parties to not only employ persons with disabilities in the public sector, but to also promote the employment of persons with disabilities in the private sector through appropriate policies and measures, which may include affirmative action programmes, incentives and other measures. Additionally, article 27(2) prohibits slavery, servitude and forced or compulsory labour for persons with disability.120
In addition, in order to comply with the requirements in article 27 in a manner that facilitates the compliance with the overarching article 19, state parties are required to do more than just protect the right to work and employment. State parties are required to go a step further and also ensure that they provide employment support services. Persons with psychosocial disabilities need support services in order to access meaningful work, and further to maintain work as they particularly struggle in this area.121 Studies have consistently found that persons with psychosocial disabilities are capable of working if they are connected with appropriate jobs and receive appropriate support.122 In line with this, the CRPD requires states parties take action to ensure that persons with disability, in this case psychosocial disabilities, receive the support that they need to participate in society as equal citizens.123 Thus, support services must be available, accessible to all and provided on the basis of equal opportunity, free and informed consent and allowing disabled people flexibility in their daily life.124 Apart from article 19(b) of the CRPD, this can be read into 27(1)(d), 27(1)(e) and 27(1)(k). This is where state parties are obligated to provide general, technical and vocational guidance programmes, placement services and vocational and continuing training.125 This goes hand in hand with article 27(1)(e), which provides that states parties should ‘promote vocational and professional rehabilitation, job retention and return-to-work programmes for persons with disabilities’.126 Then beyond training and placement services, states parties are obligated to ‘promote ... career advancement for persons with disabilities in the labour market, as well as assistance in ... maintaining and returning to employment’.127 Additionally, according to the General Comment 5, the ‘existence of individualised support services, including personal assistance, often is a precondition for effective enjoyment of the right to work and employment’.128 Supported employment is a direct service with specialised assistance in choosing, acquiring and maintaining competitive employment.129 It includes job placement, training before and on the job counselling services, to a personal job coach, provision of an employment specialist,130 rapid job search, integration of rehabilitation and mental health services, job development, benefits counselling, and individualised follow-along supports that are necessary to sustain employment.131 Case studies done across the world including the UK, USA, Netherlands and most recently in India, 132 have shown that when it comes to accessing and maintenance of competitive employment, supported employment is most effective for producing positive employment outcomes for persons with psychosocial disabilities.133
As a result, failure to provide employment support services as a pre-condition, is akin to preventing persons with psychosocial disabilities from accessing and maintaining employment.134
In summary, from all the above it is clear that state parties are obligated to do more than simply provide for access to work and employment, they are obligated to ensure that persons with psychosocial disabilities are also able to maintain said work or employment.
Kenya having ratified the CRPD,135 is obligated to adopt all appropriate legislative, administrative and other measures for the implementation of the right to work and employment in order to enable persons with psychosocial disabilities to live independently and be included in the community.136 Further, to take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities with regard to article 27 in conjunction with or under the umbrella of article 19 of the CRPD.137 However, because the right to work and employment is an economic, social and cultural right, it requires progressive realisation and not immediate realisation. 138 Nonetheless, it still demands immediate obligation to design and decide upon concrete strategies, plan of actions and allocate resources to develop support services as well as making existing as well as new general services inclusive for persons with disabilities. 139
The right to live independently and be included in the community, article 19 of the CRPD, is not provided for directly under the Kenyan legal framework, but indirectly through the collective provision of other rights.140 This is first highlighted in the Kenyan Constitution, which does not specifically provide for the right. Nevertheless, article 19 is echoed in a variety of both political and social and economic rights which are found in the Constitution. They include: the right to human dignity;141 freedom and security of the person;142 freedom of movement and nationality;143 equality and freedom from discrimination;144 freedom of expression;145 and education.146 Nonetheless, this paper will only be focusing on the right to work and employment for persons with psychosocial disabilities.
Firstly, it is important to note that the new Kenyan Constitution defines disability to include persons with psychosocial disabilities and thus its provisions apply to them.147 The 2010 Constitution furthermore, unlike the previous Constitution,148 defines disability in art 260 as:
includes any physical, sensory, mental, psychological or other impairment, condition or illness that has, or is perceived by significant sectors of the community to have, a substantial or long-term effect on an individual’s ability to carry out ordinary day-to-day activities.
Notwithstanding, although it can be argued that the wording ‘includes’ recognises that disability is an evolving concept and further its recognition of perceived disabilities is similar to the CRPD,149 it still adopts a medical approach when defining disability. This is because its focus is on the negative impact of impairments, and it fails to recognise that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.150 This is in contrast to the CRPD.
Then, the Constitution goes on to protect persons with disability from discrimination in both the public and private sphere.151 This is in compliance with article 27 of the CRPD. However, although article 27 of the Constitution prohibits direct and indirect discrimination against person with a disability, it does not include denial of reasonable accommodation and harassment as a form of discrimination in a manner that complies with article 27 of the CRPD. Further, there is no provision that deals with reasonable accommodation as a general obligation or as an anti-discrimination obligation as provided by the CRPD.
Additionally, article 56(c) obligates states parties to put in place affirmative action programmes designed to ensure that minorities and marginalised groups, which includes person with disability,152 are provided with special opportunities for access to employment. This is in compliance with article 27 of the CRPD.
Also, in line with article 27, the Constitution protects the labour and trade union rights of persons with psychosocial disabilities in article 41. It provides that every worker’s right to fair labour practices includes the right to: fair remuneration; reasonable working conditions; to form, join or participate in the activities and programmes of a trade union; and to go on strike.153 Slavery and servitude, and forced labour are also prohibited in article 30. In addition, the Constitution requires the representation of persons with disability in the National Assembly and the Senate. It provides that states should progressively ensure that at least five per cent of the members of the public in elective and appointive bodies are persons with disabilities.154 Additionally, requiring parliament to enact legislation to promote the representation of persons with disability in parliament.155
The Persons with Disabilities Act (PWA) was enacted in 2003 before the CRPD came into force. Prior to it, Kenya’s legal system made little specific provision for persons with disabilities.156 The aim of the Act is to provide for the rights and rehabilitation of persons with disability, to achieve equalisation of opportunities for them, and to establish the National Council for Persons with Disabilities.157
Firstly, similar to the Constitution, the Act’s definition of disability includes persons with psychosocial disabilities. Notably though, here again and similar to the Constitution, the definition158 reflects the medical model of disability which is in contradiction with the social understanding of disability that is adopted by the CRPD.
Here again, the Act does not directly provide for the right to live independently and to be included in the community, nevertheless, the right can be read into the functions of the National Council of Persons with Disabilities (NCPD) formed in section 3 of the Act. The NCPD is charged with formulating and developing measures and policies designed to ‘encourage and secure the rehabilitation of persons with disabilities within their own communities and social environment’;159 and to ‘co-ordinate services provided in Kenya for the welfare and rehabilitation of persons with disabilities and to implement programmes for vocational guidance and counselling’.160 Also it is charged with formulating and developing measures and policies designed to ‘achieve equal opportunities for persons with disabilities by ensuring to the maximum extent possible that they ... are afforded full access to community and social services’.161 Despite this it is important to note that the use of the words ‘to the maximum extent possible’ somewhat reduces the strength and possible impact of this the provision.162
When it comes to the right to work and employment, the right of persons with psychosocial disabilities is protected from section 12 all the way to 16 of the Act. It provides that persons with disability - this is inclusive of persons with psychosocial disabilities - should not be denied access to opportunities for suitable employment. That a person with disability who is a qualified employee should be subject to the same terms and conditions of employment and the same compensation, privileges, benefits, fringe benefits, incentives or allowances as qualified able-bodied employees.163 Additionally, the Act provides tax incentives for employers who hire persons with disability.164 Kenyan employees who hire persons with disabilities are entitled to incentives in form of tax exemption to promote the employment of persons with disabilities in the private sector. This in line with article 27(h).165 Then section 13 requires the NCPD to endeavour to secure the reservation of five per cent of all casual, emergency and contractual positions in employment in the public and private sectors for persons with disabilities. Also, section 14 provides for the right to apprenticeship opportunities for persons with disabilities.
Moreover, the Act goes on to prohibit discrimination of persons with psychosocial disabilities in the workplace.166 It prohibits both public and private employers from discriminating in all areas of employment including: advertisements, recruitment, the creation, classification or abolition of posts; the determination or allocation of wages, salaries, pensions, accommodation, leave or other such benefits; and the choice of persons for posts, training, advancement, apprenticeships, transfer and promotion or retrenchment.167 This is in line with article 27 of the CRPD. Furthermore, the Act prohibits discrimination of persons with disability in the workplace, and takes it a step further to describe the term ‘discriminate’.168 Nevertheless, discrimination is only defined in terms of direct discrimination and it does not refer to indirect discrimination either explicitly or within the scope of the definition, which is limiting and contradictory to the CRPD. Further, it does not acknowledge denial of reasonable accommodation and harassment as a form of discrimination as is provided under the CRPD.169
Further, although the Act does not directly refer to reasonable accommodation or even define it, it is echoed in Act where it provides in section 15(5) that: ‘An employer shall provide such facilities and effect such modifications, whether physical, administrative or otherwise, in the workplace as may reasonably be required to accommodate persons with disabilities’.170 Also, the Act does not define reasonable accommodation as a form of discrimination. Nevertheless, in line with the CRPD, the position taken by the Labour and Employment Court in Kenya, is that denying employees with disability reasonable accommodation amounts to discrimination, and the violation of the right to dignity. This was the position taken in Juliet Mwongeli Muema v Smollan Kenya Limited,171 and Antony Kipkorir Sang v Attorney General.172
The Act, further, establishes the National Development Fund for Persons with Disabilities, a permanent fund that provide monetary assistance to organisations and persons with disability for the first time in the history of Kenya.173 Nonetheless, the Act is a bit silent about support services in general. It is only mentioned as one of the possible uses of the National Development Fund amongst other uses. Furthermore, the decision of whether to use the fund for support services is left at the discretion of the board of trustees. In fact, the section states that ‘the board of trustees may contribute part of the funds ... to provide or contribute to the cost of assistive devices and services’.174 The use of the word ‘may’ weakens the provision and leaves persons with psychosocial disabilities in a difficult position. This is because for persons with psychosocial disabilities to be able to live independently and be included in the community, support services are key.175 It is not enough to provide for the various political and economic and social rights under the umbrella of article 19, in this case the right to work and employment, but then fail to provide for employment support services. For persons with psychosocial disability, especially those with severe psychosocial conditions, support services are crucial in order to enable them to not only access, but maintain employment.176 As a result, of lack of clarity on the necessity of support services, in section 32 and 33 above, the amount set aside in the disability fund for persons with disability in Kenya is very little. The amount is about 19 dollars (Ksh 2000) and is only given every two months.177 Further, the requirement that the fund ‘targets adults and children with severe disabilities, who require full time support of a caregiver’,178 seems to imply that the fund is only for persons with disability who are not in a position to work. Indeed, there is no funding that specifically provides support services to support employment of persons with disability. In addition, the job placement platform,179 where persons with disability are required to register, does not provide adequate information or data on the number of persons with disability who have been assisted to access and maintain employment or which specific employment services it provides. 180
Lastly, going through the Act, it seems to focus heavily on person with physical disabilities. Example, section 21 which deals with accessibility and mobility only focuses on needs of persons with physical disabilities. However, the Act is currently under review,181 and clearly it is necessary in order to take into account the provisions of the CRPD.
The purpose of the Employment Act, 2007 is to define the fundamental rights of employees and it provides basic conditions of employment for employees. It governs all forms of employment and provides for the protection of persons with disabilities from discrimination within employment.182 Here again, although disability is defined to include persons with psychosocial disability, the definition provided in section 2 adopts the medical model of disability. Also similar to the Constitution, persons with psychosocial disabilities183 are protected from direct and indirect discrimination in employment.184 It prohibits discrimination in both public and private sectors of employment.185 Furthermore, discrimination is prohibited in respect of recruitment, training, promotion, terms and conditions of employment, termination of employment or other matters arising out of the employment, which is in compliance with article 27.186 Thus, the scope of protection extends to employees and prospective employees.187 Nonetheless, here again, the Act does not define direct or indirect discrimination, and also fails to acknowledge denial of reasonable accommodation and harassment as a form of discrimination as is provided under the CRPD.188
Additionally, the Act goes on to provide that employers should pay all their employees equal remuneration for work of equal value.189 Moreover, the Act makes the dismissal unfair if the termination or discipline of an employee is based on disability.190 These two provisions are in compliance with article 27 of the CRPD. Nevertheless, here again the Act does not provide for employment support services.
As has already been highlighted, available data suggests that the current rate of employment for persons with disabilities in general, is low.191 Further, as has also been emphasised, support services are a necessary precondition for employee’s with psychosocial conditions to access and maintain employment.192 The review of the law above exposes its failure to adequately provide for employment support services not just for persons with psychosocial conditions specifically, but for persons with disability in general. Therefore, if persons with psychosocial conditions are denied employment support services and as a result are unable to access and maintain employment, their right to work and employment will be infringed, and in turn their right to live independently and in the community.193
The analysis of the Kenyan legal framework highlights the fact that although Kenyan law still has a long way to go in order to adequately protect the right to work and employment for persons with psychosocial disabilities, it has made great strides. It is important to acknowledge, that the laws have attempted to capture the spirit of article 27 of the CRPD in many instances, for example by including disability as a ground for discrimination in the Constitution for the first time in Kenya and other relevant legislation; providing for labour and trade union rights; prohibiting slavery and servitude and forced labour; providing for protection against discrimination in all areas of employment; and providing for positive measures and incentives for employers in order to motivate the employment of persons with disability. Nevertheless, the Constitution and all the laws reviewed above still adopt a medical model when it comes to defining disability which goes against the spirit of the CRPD. Further, a review of the law has highlighted a lacuna in the provision of supported employment, yet as highlighted above support services are a key precondition for persons with psychosocial conditions when it comes to access and maintenance of employment.194 Therefore, there is a need to amend the law to include provisions of supported employment. Without employment supports services, persons with psychosocial disabilities may still find themselves isolated and excluded from the workplace and further in the community. In conclusion, as the Kenyan legal framework currently stands, it has failed to adequately enable persons with psychosocial disabilities to live independently and in the community.
1. M Berghs et al ‘Do disabled people need a stronger social model: A social model of human rights?’ (2019) 34 Disability & Society 1034; CRPD Committee General Comment 5: Article 19: Living independently and being included in the community (2017) UN Doc CRPD/C/GC/5 dated 27 October 2017 para 1.
2. L Mladenova ‘The right to live independently and be included in the community: Addressing barriers to independent living across the globe ‘European Network on Independent Living (2017) http://enil.eu/wp-content/uploads/2017/06/The-right-to-live-independently_FINAL.pdf (accessed 10 March 2020); E Kamundia ‘Choice, support and inclusion: Implementing article 19 of the Convention on the Rights of Persons with Disabilities in Kenya’ (2013) 1 African Disability Rights Yearbook 54.
8. DJ Viviers ‘Mental health and the world of work: A comparative analysis of the legal frameworks governing categories of mental health conditions’ PhD thesis, University of the Free State, 2016 at 22.
9. Viviers (n 8); M Swanepoel ‘Human rights that influence the mentally ill patient in South African medical law: A discussion of sections 9; 27; 30 and 31 of the Constitution’ (2011) 14 Potchefstroom Electronic Law Journal 126.
10. See W Holness ‘The invisible employee: Reasonable accommodation of psychosocial disability in the South African workplace’ (2016) 32 South African Journal on Human Rights 510, provides that: the CRPD’s reference to ‘mental’ impairment in art 1, includes persons with psychosocial disabilities. The preferred terminology is ‘persons with psychosocial disabilities’ instead of persons with mental disability. This is in line with the social model of disability and the recognition that disability is an evolving concept (Preamble para (e) of the CRPD). Psychosocial disabilities include mood disorders (such as depression and bipolar disorder), anxiety disorders and psychotic disorders (such as schizophrenia and some forms of bipolar disorder); K Vornholt et al ‘Disability and employment - Overview and highlights’ (2018) 27 European Journal of Work and Organizational Psychology 40 at 41 defines psychosocial disabilities to include both common mental disorders, which include adjustment, mood, and anxiety disorders, and severe mental disorders such as schizophrenia or bipolar disorders; C Harvey et al ‘People living with psychosocial disability: Rehabilitation and recovery-informed service provision within the second Australian national survey of psychosis’ (2016) 50 Australian & New Zealand Journal of Psychiatry 534 at 535 points out that the term psychosocial disability is also preferred over psychiatric disability because it emphasises the social consequences of disability, while psychiatric disability focusses on impairment.
12. SJ Hoffman, L Sritharan & A Tejpar ‘Is the UN Convention on the Rights of Persons with Disabilities impacting mental health laws and policies in high-income countries? A case study of implementation in Canada’ (2016) 16 BMC International Health and Human Rights 2.
13. S Kleintjes, C Lund & L Swartz ‘Barriers to the participation of people with psychosocial disability in mental health policy development in South Africa: A qualitative study of perspectives of policy makers, professionals, religious leaders and academics’ (2013) 13BMC International Health and Human Rights 1.
20. Judge DL Bazelon (Centre for Mental Health Law) ‘Getting to work: Promoting employment of people with mental illness’ (September 2014) http://www.bazelon.org/wp-content/uploads/2017/01/Getting-to-Work.pdf (accessed 21 March 2020) 3.
24. Devinit.org ‘Status of disability in Kenya: Statistics from the 2019 census’ (6 May 2020) https://devinit.org/resources/status-disability-kenya-statistics-2019-census/#down loads (accessed 3 October 2020).
25. Fact Sheet: The World Health Report ‘Mental and neurological disorders’ (2001) https://www.who.int/whr/2001/media_centre/en/whr01_fact_sheet1_en.pdf?ua=1 (accessed 3 October 2020) in The Kenya Mental Health Policy 2015-2030 (August 2015) http://publications.universalhealth2030.org/uploads/Kenya-Mental-Health-Policy.pdf (accessed 3 October 2020).
27. Kenya is a signatory of African Charter on Human and Peoples' Rights and as a result domesticated article 15 on the right to work and employment in the Employment Act which defines the fundamental rights of employees. See African Commission on Human and Peoples’ Rights ‘Ratification table: African Charter on Human and Peoples' Rights’ https://www.achpr.org/ratificationtable?id=49 (accessed 3 October 2020)
29. Kenya National Commission on Human Rights ‘Silenced minds: The systematic neglect of the mental health system in Kenya: A human rights audit of the mental health system in Kenya’ (November 2011) http://www.knchr.org/Portals/0/EcosocReports/THE_%20MENTAL_HEALTH_REPORT.pdf (accessed 20 March 2020) 38; Kamundia (n 2).
34. Council of Europe Commissioner for Human Rights ‘Issue paper: The right of people with disabilities to live independently and be included in the community’ (2011) https://rm.coe.int/the-right-of-people-with-disabilities-to-live-independently-and-be-inc/1680 6da8a9 (accessed 10 March 2020) 12; Kamundia (n 2) 55.
35. V Okeyo ‘ Report reveals huge toll of neglect at Mathari Hospital’ Nairobi News 12 December 2018; D McKenzie ‘Rights groups accuse Kenya of patient abuse’ 3 March 2011 http://edition.cnn.com/2011/WORLD/africa/03/02/kenya.health/index.html (accessed 5 March 2020), D McKenzie, ‘Kenya's mentally ill locked up and forgotten’ 25 February 2011 http://edition.cnn.com/2011/WORLD/africa/02/25/kenya. forgotten.health/index.html (accessed 5 March 2020)_
39. ILO ‘Inclusion of people with disabilities in Kenya’ (2009) https://www.ilo.org/wcmsp5/groups/public/@ed_emp/@ifp_skills/documents/publication/wcms_1150 97.pdf (accessed 6 July 2020).
41. Kenyan National Human Rights Commission ‘Compendium on submissions to CRPD’ (2016) http://rodra.co.za/images/countries/kenya/concluding_observations/KNCHR%20Compendium%20CRPD%20REPORT%20A4.pdf (accessed 14 October 2020).
43. ID Ebuenyi et al ‘Expectations management: Employer perspectives on opportunities for improved employment of persons with mental disabilities in Kenya’ (2020) 42 Disability and Rehabilitation 1687; Ebuenyi et al (n 18) 2.
46. Becker et al (n 17); ASM Chan, HWH Tsang & SMY Li ‘Case report of integrated supported employment for a person with severe mental illness’ (2009) 63 The American Journal of Occupational Therapy 238.
50. Judge Bazelon (n 20) 3; R King et al ‘Enhancing employment services for people with severe mental illness: The challenge of the Australian service environment’(2006) 40 Australian and New Zealand Journal of Psychiatry 471 at 472.
54. United Nations Department of Economic and Social Affairs Disability ‘Convention on the Rights of Persons with Disabilities (CRPD)’ https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html (accessed 15 October).
57. Office of the High Commissioner for Human Rights ‘Ratification status for Kenya’ http://tbinternet.ohchr.org/_layouts/TreatyBodyExternal/Treaty.aspx?CountryID= 90&Lang=en (accessed 28 March 2020).
63. C O'Mahony ‘Legal capacity and detention: Implications of the UN Disability Convention for the inspection standards of human rights monitoring bodies’ (2012) 16 The International Journal of Human Rights 883 at 885.
65. Mladenova (n 2) 7 and 8; I Bulić & C Parker (eds) ‘Focus on Article 19 of the UN Convention on the Rights of Persons with Disabilities’ The European Coalition for Community Living (2009) http://community-living.info/wp-content/uploads/2014/02/ECCL-Focus-Report-2009-final-WEB.pdf (accessed 10 March 2020) 3.
67. The European Network on Independent Living (ENIL) ‘ENIL’s contribution to the consultation on the draft Council of Europe Disability Strategy 2017-2023’ (23 May 2016) http://enil.eu/wp-content/uploads/2016/05/ENILSubmissionCoE_2305 16.pdf (accessed 9 March) 5.
68. Council of Europe Commissioner for Human Rights (n 34) 9; art 19 has its roots in civil and political as well as economic, social and cultural rights: The right to liberty of movement and freedom to choose one’s residence (art 12 of the International Covenant on Civil and Political Rights); and the right to an adequate standard of living, including adequate clothing, food and housing (art 11 of the International Covenant on Economic, Social and Cultural Rights) and to basic communication rights form the basis for the right to live independently and be included in the community. Liberty of movement, an adequate standard of living as well as the ability to understand and have one’s preferences, choices and decisions understood, form indispensable conditions for human dignity and the free development of a person, see CRPD Committee (n 1) para 8.
77. R Townsley et al ‘The Implementation of Policies Supporting Independent Living for Disabled People in Europe: Synthesis Report’ (November 2009, amended January 2010) https://www.academia.edu/24375031/The_Implementation_of_Policies_Sup porting_Independent_Living_for_Disabled_People_in_Europe_Synthesis_Report (accessed 2 March 2020) 8. White Paper on the Rights of Persons with Disabilities (Approved by Cabinet on 9 December 2015) https://www.gov.za/sites/default/files/gcis_document/201603/39792gon230.pdf(70) (accessed 2 March 2020).
89. Including housing, transport, education, employment and training, recreational activities and all other facilities and services offered to the public, including social media, CRPD Committee (n 1) para 28.
92. C Brennan et al ‘How can states ensure access to personal assistance when service delivery is decentralised? A multi-level analysis of Iceland, Norway and Sweden’ (2017) 19 Scandinavian Journal of Disability Research 334; CRPD Committee (n 1) para 28 and 19(b) provides that: Community support services’ are services, based in the community, that support ‘living and inclusion in the community’ and ‘prevent isolation and segregation from the community’. However, this term is commonly used incorrectly to refer to services that are physically located in the community, but are not necessarily inclusive; for example, group homes, sheltered workshops and day-care centres. Often, such services perpetuate segregation and exclusion from the community, because they maintain a parallel system for disabled people, away from the mainstream.
93. CRPD Committee (n 1) para 19(b) states that: ‘Individualised support services may vary in name, type or kind according to the cultural, economic and geographic specifics of the State party, all support services must be designed to be supporting living included within the community preventing isolation and segregation from others within the community and must in actuality be suitable to this purpose. It is important that the aim of these support services is the realisation of full inclusion within the community’. See more General Comment No 5 para 28, 29 and 30; and Brennan et al (n 94) 334.
98. CRPD Committee (n 1) para 69; European Coalition for Community Living ‘Focus on article 19 of the UN Convention on the Rights of Persons with Disabilities’ Focus Report (2009) http://community-living.info/wp-content/uploads/2014/02/ECCL-Focus-Report-2009-final-WEB.pdf (accessed 30 March 2020) 7.
108. M Fasciglione ‘Article 27 of the CRPD and the right of inclusive employment of people with autism’ in VD Fina & R Cera (eds) Protecting the rights of people with autism in the fields of education and employment (2015) 146.
111. L Waddington & M Bell ‘The Employment Equality Directive and supporting people with psychosocial disabilities in the workplace: A legal analysis of the situation in the EU Member States’ (2016) https://pdfs.semanticscholar.org/709c/e191dc4236d6dad 49894aded969dcf0f50cf.pdf (accessed 18 March 2020) 7 and 8; M Modini et al ‘Supported employment for people with severe mental illness: Systematic review and meta-analysis of the international evidence’ (2016) 209 The British Journal of Psychiatry 14.
114. MV Liisberg ‘Flexicurity and employment of persons with disability in Europe in a contemporary disability human rights perspective’ (2015) 4 European Yearbook of Disability Law 145 at 152; art 27(1)(a).
121. Mental Health Europe ‘Toolkit on article 27 of the UN CRPD’ (2017) https://mhe-sme.org/wp-content/uploads/2017/09/Toolkit-on-article-27-of-the-UNCRPD.pdf9 (accessed 30 March) 3. These work places provided protected environments for people with psychosocial disabilities based on the idea that people could not cope in working environments in the open labour market. These settings were segregated and often provided poor quality and repetitive work.
122. Judge Bazelon (n 20); European Union Agency for Fundamental Rights Choice and Control ‘The right to independent living experiences of persons with intellectual disabilities and persons with mental health problems in nine EU Member States’ (2012) https://fra.europa.eu/en/publication/2012/choice-and-control-right-independent-living , https://fra.europa.eu/sites/default/files/fra_uploads/2129-FRA-2012-choice-and-control_EN.pdf (accessed 30 March); J Rice & R Traustadottir ‘ANED country report on the implementation of policies supporting independent living for disabled people: Iceland’ (2009) https://www.researchgate.net/publication/304494770_ANED _country_report_on_the_implementation_of_policies_supporting_independent_living_for_disabled_people_Iceland/link/5771326c08ae0b3a3b7d4eeb/download (accessed 17 March) 6.
133. Modini et al (n 111); Engelbrecht et al ‘Supported employment for people with mental disabilities in South Africa: Cost calculation of service utilisation’ (2017) 47 South African Journal of Occupational Therapy 11; Ebuenyi et al (n 18).
135. Office of the High Commissioner for Human Rights ‘Ratification status for Kenya’ http://tbinternet.ohchr.org/_layouts/TreatyBodyExternal/Treaty.aspx?CountryID= 90& ang=en (accessed 28 March 2020).
165. Sec 12 provides that: ‘1) No person shall deny a person with a disability access to opportunities for suitable employment. 2) A qualified employee with a disability shall be subject to the same terms and conditions of employment and the same compensation, privileges, benefits, fringe benefits, incentives or allowances as qualified able-bodied employees. (3) An employee with a disability shall be entitled to exemption from tax on all income accruing from his employment.’
168. Sec 2: to accord different treatment to different persons solely or mainly as a result of their disabilities and includes using words, gestures or caricatures that demean, scandalise or embarrass a person with a disability.
177. National Safety Net Programme - Cash Transfer for Persons with Severe Disabilities (PWSD-CT) http://www.socialprotection.or.ke/national-safety-net-program/cash-transfer-for-persons-with-severe-disabilities-pwsd-ct (accessed 20 March 2020).
181. Kenyan Human Rights Commission ‘Towards equality and anti-discrimination: An overview of international and domestic law on anti-discrimination in Kenya’ (25 January 2015) http://www.khrc.or.ke/publications/64-an-overview-of-inter national-and-domestic-law-on-discrimination-in-kenya-1/file.html (accessed 23 March 2020) 6-8.
- Elizabeth Kamundia
- Assistant Director, Research, Advocacy and Outreach Directorate, Kenya National Commission on Human Rights
- PhD (University of Pretoria), LLM (National University of Ireland Galway), LLB (University of Nairobi) Advocate of the High Court of Kenya
- Faizah Sidi
- Senior Human Rights Officer, Research, Advocacy and Outreach Directorate, Kenya National Commission on Human Rights
- LLB (Catholic University of Eastern Africa), Advocate of the High Court of Kenya
- E Kamundia & F Sidi ‘The role of national human rights institutions in advancing Article 19 of the UN Convention on the Rights of Persons with Disabilities’ (2020) 8 African Disability Rights Yearbook 52-70
- Download article in PDF
National Human Rights Institutions (NHRIs) established in accordance with the Principles relating to the Status of National Institutions (Paris Principles) have been identified as an essential pillar in the promotion and protection of the rights of persons with disabilities under article 33(2) of the CRPD. This article examines how NHRIs can leverage their respective mandates to address concerns on implementation of article 19 of the CRPD on the right to live independently in the community. Article 19 is especially important in the African context where persons with disabilities lack access to a range of in-home, residential and other state funded community support services as highlighted by the Committee on the Rights of Persons with Disabilities in concluding observations to African states. The article looks into the role played by NHRIs in realising article 19 of the CRPD, with reference to Kenya where the National Human Rights Institution has been designated as the monitoring agency under article 33(2) of the CRPD. The article also explores the potential role of NHRIs in promoting article 19.
National Human Rights Institutions (NHRIs) established in accordance with the Principles relating to the Status of National Institutions (Paris Principles) have been identified as a critical pillar in the promotion and protection of the rights of persons with disabilities.1 Article 33(2) of the United Nations Convention on the Rights of Persons with Disabilities (CRPD or Convention) requires state parties to designate one or more independent mechanisms to promote, protect and monitor the implementation of the Convention, taking into account the Paris Principles. Article 33 of the Convention has been recognised as one of the milestones of the CRPD in outlining institutional changes to facilitate implementation and monitoring of the rights of persons with disabilities.2 However, the potential and role of NHRIs in advancing the right of persons with disabilities to live independently in the community in view of article 33(2) of the CRPD is rarely canvassed. Knowledge of good practices or initiatives undertaken by NHRIs in order to promote, protect and monitor the right of persons with disabilities to live independently in the community is still very limited.3 The lacuna in information on the role of NHRIs comes at a time when there are 21 African countries with NHRIs accredited as fully compliant with the Paris Principles.4 Moreover, discussions at national level on the right of persons with disabilities to live independently in the community are often driven by organisations of persons with intellectual or psychosocial disabilities with little to no investment by the state to fulfil its obligations under article 19 of the CRPD.5
This article explores how NHRIs can leverage their respective mandates to address concerns on implementation of article 19 of the CRPD on the right to live independently in the community, using the Kenyan NHRI as a case study. Article 19 has been selected as a test case for NHRIs because it blurs the traditional divide in the human rights discourse between the established civil and political rights and economic, social and cultural rights.6 Article 19 exemplifies the interrelation, interdependence and indivisibility of all human rights,7 and therefore challenges the ability of NHRIs to drive the process of change forward.
The section that follows examines the import of article 19 of the CRPD on the right to live independently in the community. The section lays the foundation for discussion on the role on NHRIs in advancing the rights of persons with disabilities to live independently in the community.
Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD) provides for the right for all persons with disabilities to live in the community as equal citizens. The right of all persons with disabilities to live in the community is not explicitly provided for in any treaty prior to the CRPD.8 However, the right to live in the community is not a new right but rather, a creative interpretation of existing rights that has been specially tailored to apply to the context of persons with disabilities.9 In particular, the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities provides that:10
Persons with disabilities are members of the society and have the right to remain within their local communities. They should receive the support they need within ordinary structures of education, health, employment and social services.
Additionally, General Comment 9 of the Committee on the Rights of the Child (2006) states that young children should never be institutionalised solely on the grounds of disability.11 It is worth noting, however, that General Comment 9 of the Committee on the Rights of the Child does not prohibit institutionalisation absolutely. In this regard, General Comment 9 calls for state parties to ‘use the placement in institution only as a measure of last resort, when it is absolutely necessary and in the best interests of the child’.12 This underscores the fact that institutions are generally not best suited to provide care for children. It is now necessary to turn to the content of article 19 of the CRPD.
- Persons with disabilities have the equal opportunity to choose where and with whom to live;
- A range of community-based services is availed to persons with disabilities to support inclusion; and
- Services and facilities available for the general population are available to persons with disabilities and responsive to their needs.
The UN Committee on the Rights of Persons with Disabilities has developed a General Comment on article 19 of the CRPD.13 Although General Comments provide expert interpretations to treaty provisions,14 it is worth noting that they lack binding legal force.15 Nevertheless, General Comments are useful in clarifying state obligations in relation to the specified treaty provisions.
The General Comment on article 19 of the CRPD16 identifies eight core elements of the article. The first is the right to exercise legal capacity in determining where and with whom to live.17 Secondly, is the principle of non-discrimination in accessing accessible housing.18 Thirdly, is the requirement to expand options for persons with disabilities to live independently in the community, beyond the support provided by family.19 The fourth core element of article 19 is the requirement to ensure that basic mainstream services are accessible to persons with disabilities in both law and practice.20 Fifth is the requirement to develop a concrete action plan on implementing personalised, rights-based disability-specific support services.21 The sixth core element requires that states ensure non-retrogression in achieving the content of article 19 unless in accordance with international law.22 The seventh element requires the collection of quality data on persons with disabilities, regardless of their place of residence.23 The eighth and final core element calls for the use of any available funding, including regional funding and funding for development cooperation, to develop inclusive and accessible independent living services.24
The core elements identified above underscore the interrelation and interdependence of rights, and of particular interest for present purposes is the relationship between articles 12 and 19 of the CRPD. As is stated in the General Comment on article 19 of the CRPD,25 the right to ‘choose and decide how, where and with whom to live is the central idea of the right to live independently and be included in the community’.26 This clearly entails an exercise of legal capacity. A question that may arise in this regard is whether one can exercise legal capacity to live in an institution. It is the view of the authors that all too often, there is a lack of options to choose from, and therefore, currently, the ‘choice’ to live in an institution is not a real choice as it is driven by a lack of alternatives. Furthermore, as the General Comment elucidates, individual choice includes:27
all aspects of a person’s living arrangements: the daily schedule and routine as well as the way of life and lifestyle of a person, covering the private and public spheres, every day and in the long term.
At the same time, it is worth acknowledging that the full realisation of article 19 depends on ‘progressive achievement’ of those parts of article19 that are progressively applicable (economic, social and cultural rights). These are article 19(b) and (c).28 In this regard, state parties have an immediate obligation to design concrete strategies, and resources to develop support services as well as making existing, and new, general services inclusive for persons with disabilities. 29
2.2 The Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa
In addition to the CRPD, the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa provides for the right of persons with disabilities to live in the community under article 14. While the Protocol has not yet come into force,30 it is important to compare article 14 of the Protocol with article 19 of the CRPD in order to clarify similarities and/or differences between the two provisions and resultant state obligations. Notably, the text of the Protocol is largely similar to that of the Convention, except for a few critical elements as discussed in this sub-section.
Unlike the CRPD, the Protocol explicitly provides for the right of persons who require intensive support to have access to respite care services/caregivers.31 This is critical, in the light of the fact that most African countries lack support for living in the community as will be discussed below under section 3 entitled: ‘Issues of concern on implementing the right to live independently in the community in selected African states’.
An additional difference between the Protocol and the CRPD is that the Protocol requires that Community Based Rehabilitation (CBR) should be provided in ways that enhance the inclusion of persons with disabilities in the community32 (in other words, CBR should not be based on a medical model approach of ‘fixing’ the person). Unlike the CRPD, the Protocol also requires that community living centers organised or established by persons with disabilities be supported to provide training and peer support, among other services to persons with disabilities. 33
As stated in the introduction, article 19 of the CRPD entails civil and political as well as economic, social and cultural rights. In this regard, the principle of progressive realisation of rights as outlined in article 4(2) of the CRPD is critical. Article 4(2) of the CRPD makes a distinction between rights that are to be progressively realised and those that are immediately applicable. It states that in relation to economic, social and cultural rights, each state party shall take measures to the maximum of its available resources, with a view to achieving progressively the full realisation of these rights. The Protocol does not make this distinction expressly. Article 4(a) of the Protocol calls upon states to adopt ‘appropriate measures for the full and effective implementation of the rights recognised in the present Protocol’. Under the Protocol, the language of progressive realisation is only expressly utilised in relation to articles 15(2) on accessibility and 16(3)(d) on the right to education.
3 Issues of concern on implementing the right to live independently in the community in selected African states
The UN Committee on the Rights of Persons with Disabilities (CRPD Committee) has as at 30 March 2020 issued Concluding Observations to 13 African states.34 Of the 13 African states examined so far, only one state (Tunisia) did not receive Concluding Observations on article 19.35 Some common issues of concern have arisen in the Concluding Observations issued by the CRPD Committee on article 19 to African states. These issues present a starting point for understanding the challenges faced by African states on the right to live independently in the community and therefore introducing proposals about the role that National Human Rights Institutions (NHRIs) can play in advancing this right.
The first and most prevalent issue of concern relates to the prevalence of institutionalisation of persons with disabilities.36 In terms of institutionalisation, the CRPD Committee has expressed concern regarding, in particular, the institutionalisation of children.37 In this regard, the Committee, in its Concluding Observations to Mauritius expressed concern that children are removed from family settings and placed in residential institutions, where they lack care and psychological support and are sometimes subjected to cruel, inhuman and degrading treatment.38 The Committee has also expressed concern about the lack of a well-defined national strategic and legislative framework on deinstitutionalisation.39
The second issue of concern highlighted by the CRPD Committee is the absence of community support services that provide for inclusion of persons with disabilities in society.40 The Committee notes that the lack of provision of essential services affects in particular persons with psychosocial and/or intellectual disabilities who are marginalised from everyday life as a result of lack of these services. 41 Furthermore on persons with psychosocial disabilities, in the context of Sudan, the CRPD Committee expressed concern that persons with psychosocial disabilities are still forced to live in reformatories without their consent, ostensibly in the interests of ensuring close supervision and providing access to better healthcare and treatment.42 In the context of Ethiopia, the Committee expressed concern at the lack of availability and accessibility of personal assistance services for persons with disabilities.43
The third critical issue of concern is the fact that there are persons with disabilities living in social isolation and segregated from their families and the community.44 The CRPD Committee expressed concern about the lack of measures aimed at persons with disabilities who do not have supportive families for whatever reason. In the specific context of Gabon, the Committee expressed concern about the lack of measures aimed at persons with disabilities who are abandoned by their families, especially in and around the capital in so-called ‘cités’.45 In addition and still related to families, the Committee expressed concern that families who are often the sole base of support for persons and children with disabilities (especially those with psychosocial and intellectual disabilities) receive limited assistance from the state.46
The fourth issue of concern garnered from the analysis is the inaccessibility of independent living support services in rural areas and for migrants and refugees with disabilities, and the absence of home and community-based care for children with disabilities, especially in rural areas.47 The Committee noted that that inaccessible infrastructure and services make it difficult for persons with disabilities to participate in the activities of daily life independently, in particular in rural or remote areas.48
The fifth issue of concern raised by the CRPD Committee to some of the African states examined so far relates to the absence of home and community-based care for children with disabilities, especially in rural areas.49 In this regard, the Committee expressed concern that private day-care centres where children with disabilities are placed are neither regulated nor monitored by the state. In the specific context of Mauritius, the Committee expressed concern that children with disabilities continue to be placed in ‘centres de sauvegarde’ (abris des enfants en détresse).50
The sixth issue of concern expressed by the CRPD Committee to a number of the African states examined relates to the limited level of awareness among persons with disabilities of available independent living support services, including personal assistance services, and the inaccessibility of those services for persons affected by leprosy, persons with physical disabilities, persons with disabilities in rural areas and migrant workers with disabilities.51 In addition to the lack of information on the availability of accessible independent living support services in the community, the Committee expressed concern about the lack of awareness about how to claim such assistance.52
4 The present and potential role of NHRIs in advancing article 19 of the CRPD: The case study of the Kenyan National Human Rights Institution
Many of the issues discussed in the foregoing section reveal system deficits that National Human Rights Institutions (NHRIs) are ideally placed to address and help resolve, given their broad mandate to promote and protect human rights under the Paris Principles.53 NHRIs, especially those that are compliant with the Paris Principles, play a critical and unique role in the promotion and protection of human rights at national level,54 while treaty and charter-based mechanisms play a critical role at an international level in assessing state compliance with human rights treaties. In essence, human rights protection and promotion cannot be achieved without effective national human rights systems. In this regard, state parties bear the primary responsibility of respecting, protecting and fulfilling rights obligations, and NHRIs created in compliance with Paris Principles form part of the central elements of a strong national human rights system that contribute to the promotion and protection of human rights at national level.55
The recognition of the importance of NHRIs in implementation of the CRPD can be found under article 33(2) of the CRPD. Article 33(2) obligates state parties to designate or establish one or more independent mechanisms to promote, protect and monitor the implementation of the Convention taking into account the Paris Principles. Article 33(2) has been noted as one of its kind in monitoring implementation of treaty obligations at national level. As observed by GD Beco:56
Human rights treaties define which rights States should respect, protect and fulfil. However, these treaties do not determine through which means they should do this ... In contrast, Article 33(2) of the CRPD provides that States should designate or establish one or more independent mechanisms to promote, protect and monitor the implementation of Convention taking into account the Paris Principles ... the inclusion of obligation to create independent mechanisms is a recent phenomenon.
This means that article 33(2) requires state parties to maintain, strengthen, designate or establish within the state party one or more independent mechanism or mechanisms to promote, protect and monitor implementation of the Convention. The state party may choose to appoint an existing body or bodies and empower them with the mandate to promote, protect and monitor the implementation of rights contained in the Convention.57 The body designated to be an independent mechanism or part of bodies that are so designated must be compliant with the Paris Principles.58
This section examines the role of NHRIs in advancing article 19 of the CRPD using the case study of the Kenyan NHRI, the Kenya National Commission on Human Rights (hereinafter KNCHR or the Commission).59 The Commission is the designated national monitoring agency under article 33(2) of the Convention on the Rights of Persons with Disabilities.
NHRIs can support the enjoyment of article 19 of the CRPD by persons with disabilities in a variety of ways. First, NHRIs can advocate for the development of a well-defined legislative framework on deinstitutionalisation and independent living community support services to encourage the inclusion of persons with disabilities.60 NHRIs can make recommendations on this matter during review of bills and policies for compliance with human rights standards. This is in line with the responsibilities envisaged for NHRIs under the Paris Principles. Under the Paris Principles, NHRIs should advise and provide opinions, recommendations, proposals and reports to the government, parliament or other responsible organ on legislative or administrative provisions.61
Critical bills and policies that might present significant opportunities for deinstitutionalisation (in law) include mental health laws as well as stand-alone ‘persons with disabilities’ laws. This would be in line with General Comment 5 (2017) on living independently and being included in the community, in which state parties are required to adopt a national strategy on living independently and being included in the community and prevent the isolation or segregation of persons with disabilities.62 In this regard, KNCHR has been at the forefront of advocating for amendments to Kenya’s Mental Health Act, 1989 to render the Act more in line with the UN Convention on the Rights of Persons with Disabilities. Accordingly, the Commission has advised the National Assembly that the mental health law should: 63
Avoid institutionalization and medicalization of children to the greatest extent possible. The law should explicitly recognise that institutionalization is detrimental to the development of the child, and contain a general principle to the effect that every effort shall be made to provide support and treatment of children through community health services. The law should ensure that children and adolescents with mental health conditions are provided with early intervention through evidence-based psychosocial and other non-pharmacological interventions based in the community, avoiding institutionalization and medicalization.
While the advisory role is critical to the effectiveness of NHRIs in advancing human rights,64 one disadvantage related to this is that states may disregard the recommendations of NHRIs, which are not binding.65 Indeed the implementation of recommendations made by NHRIs depends upon the commitment of other state departments to act on findings made by NHRIs and their capacity to do so.66 To militate against this, NHRIs should endeavour to develop and maintain good relationships with relevant government agencies to facilitate dialogue where appropriate. This calls for carefully balancing between the adviser and adversarial roles played by NHRIs.67 It is also important for NHRIs to foster strong partnerships with business and civil society actors at national level in order to amplify efforts.
The second role of NHRIs in advancing article 19 of the CRPD relates to their mandate in ensuring compliance with obligations under treaties relating to human rights.68 The Paris Principles prescribe that NHRIs should bolster ratification and implementation of international human rights instruments.69 NHRIs are also required to contribute to national human rights reports to treaty body mechanisms and where necessary express an independent opinion on matters discussed.70 This entails the issuing of parallel reports to treaty body mechanisms in relation to treaties that have been ratified by the specific state. In this regard, NHRIs can make recommendations to advance article 19 of the CRPD in their parallel reports or in their engagements with special UN mechanisms (not limited to the UN Convention on the Rights of Persons with Disabilities). Such recommendations may call upon the treaty body/special mechanism to require the state in question to take any of the following steps:
- Provide grants and budgetary allocations to persons with disabilities to promote independent living in the community covering support for assistive devices, guides, sign language interpreters, affordable skin-care protection for persons with albinism,71 and cash transfer schemes for personal assistance services.72 (This recommendation may fall under the parallel report on the International Covenant on Economic, Social and Cultural Rights).
- Adopt the necessary measures to prevent isolation or segregation of persons with disabilities from the community by being hidden in the family, or in segregated institutions.73 (This recommendation may fall under the parallel report on the Convention Against Torture).
- Systematically provide information to all persons with disabilities, including migrant workers with disabilities and their families, on how to access support services and assistance.74 (This recommendation may fall under the parallel report on the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families).
- Ensure accessibility to community services and facilities by all persons with disabilities in all areas of life, as well as home and community-based care for children with disabilities, particularly in rural areas.75 (This recommendation may fall under the parallel report on the Convention on the Rights of the Child).
In relation to the above, the Kenya National Commission on Human Rights’ 2019 parallel report on the third cycle of the Universal Periodic Review76 noted violations on the right of persons with disabilities to live independently in the community and made the following recommendations:77
- Amend Sections 10(3), 14, and 16 of the Mental Health Act which allows for involuntary detention of users of mental health services in consultation with organizations for/of persons with disabilities;
- Develop action plan to support de-institutionalization and transition to community based mental health service;
- Provide state funded support services for persons with disabilities at community level, including caregivers, respite services, peer support and personal assistance services.
Parallel reports by NHRIs may influence the Concluding Observations issued by treaty body mechanisms to a specific state. While Concluding Observations are very valuable expert interpretations, they are often not widely disseminated and the public in the given country often remains unaware of them. In many cases, states pay little attention to their implementation.78 This illustrates why it is critical for NHRIs to effectively play their role in relation to promoting compliance with obligations under treaties relating to human rights.
The third role that NHRIs may play to advance article 19 of the CRPD relates to monitoring, especially in relation to NHRIs which have already been designated as the monitoring agencies under article 33(2) of the CRPD as discussed in section 4.1 above. In this regard, NHRIs can monitor the extent to which Concluding Observations on article 19 are implemented. They can also monitor non-compliance with progressive national legislation that may advance article 19 of the CRPD.79 In addition, NHRIs can, for example, regularly and closely monitor places where children are institutionalised and advocate for the development of family and community-based alternatives for those deprived of a family environment.80 Monitoring should also include mental health institutions. In relation to mental health institutions, the World Health Organisation has developed a human rights-based toolkit for monitoring entitled the
QualityRights Toolkit,81 which has a specific module on the right of persons with disabilities to live independently in the community. NHRIs should be keen to partner/collaborate with health ministries towards use of the WHO QualityRights Toolkit in monitoring mental health institutions. The Kenya National Commission on Human Rights is already involved in this process.82
NHRIs should ideally monitor the extent to which relevant authorities follow the recommendations set forth in the monitoring reports. This presupposes a good working relationship with government departments,83 as NHRIs may require information from these departments in order to assess progress on implementation of recommendations. The inherent limitation is that governments may take the NHRI’s advice on small points, while pressing ahead with actions that breach human rights commitments.84 NHRIs can mitigate this by using courts or specialised tribunals as avenues to enforce recommendations in specific instances where their recommendations have been ignored or rejected.85 However, the ability of NHRIs to effectively leverage on this mandate must be accompanied by structural baseline commitments such as the ability to intervene in court cases relevant to human rights and the authority to take recommendations to court for enforcement. 86
The fourth role that NHRIs can play to advance article 19 of the CRPD relates to receiving and investigating complaints about alleged violations of the right of persons with disabilities to live independently and be included in the community. The Paris Principles require that national institutions be vested with specific mandate to protect human rights,87 which may entail activities such as receiving, investigating and resolving complaints.88 The Paris Principles do not require for NHRIs to have the power to receive complaints for alleged human rights violations,89 but where an NHRI is provided with this mandate it is expected to handle the complaints fairly and effectively.90 Therefore, NHRIs should, on receipt of individual complaints revealing a violation of article 19 of the CRPD, take steps to secure appropriate redress.
In order to effectively handle complaints, NHRIs should be easily accessible to members of the public.91 Unfortunately, this is not always the case as some NHRIs are not in a position to establish offices within easy reach of the whole population and digital access may also be limited by various factors. In other cases, NHRIs may be inundated with complaints and lack adequate resources and personnel to handle the complaints effectively.92 NHRIs can militate against this by advocating for higher budgetary allocations from government, as well as seeking alternative sources of funding where appropriate.
The fifth role that NHRIs can play to advance article 19 relates to their function in advancing economic, social and cultural rights generally, and in particular the right to housing. Notably, there are ongoing projects to upgrade slums in many African countries, including Kenya, and such projects should be inclusive of persons with disabilities. In this regard, the Kenya National Commission on Human Rights was ordered by the High Court in the case of David Ngige Tharau & 128 others v Principal Secretary Ministry of Lands, Housing and Urban Development & 2 others93 to oversee the allocation of houses in the Kibera Slum Upgrading Process to ensure that only genuine beneficiaries benefitted from the project.94 Where opportunities to advance economic, social and cultural rights are present, NHRIs should ensure that the principle of non-discrimination95 is applied in fulfilling these rights so that persons with disabilities are not left behind.
In carrying out the above roles, NHRIs must ensure the active participation of persons with disabilities and their representative organisations96 in accordance with articles 4(3) and 33(3) of the CRPD.
As was stated in the introduction, the Paris Principles require that national institutions be vested with specific mandate to promote and protect human rights.97 The Office of the High Commissioner for Human Rights understands promotion as those functions needed to change attitudes and behaviour which may include education, outreach, publications, training and capacity building and advising and assisting governments.98 NHRIs should therefore take up the mandate to educate and inform state and non-state actors about article 19 of the CRPD. One of the reasons why persons with disabilities fail to fully enjoy the right to live in the community is stigma and negative attitudes that cause families to hide family members who have disabilities.99 NHRIs should raise public awareness about the inherent worth of all persons, including those with disabilities, in order to create more inclusive societies.
Many NHRIs have an express or implied mandate to hold public inquiries, either in relation to a single serious incidence or more often in relation to systemic or general human rights issues.100 The inquiry process enables NHRIs to examine an issue in depth and from a human rights perspective.101 For these purposes, NHRIs have full powers to compel testimony and witnesses.102 NHRIs may also choose to convene inquiries on issues of interest, but without utilising coercive powers. In this regard, NHRIs may rely on voluntary witnesses and seek the contribution of members of the public and NGOs without the formal powers of a more formal and adversarial process that is based on statute.103 Although public inquiries are resource intensive, conducting them can help promote respect for rights and raise public awareness.104 In relation to article 19 of the CRPD, an inquiry could be held in response to a serious incident, for example, allegations of abuse of institutionalised individuals residing in a mental health facility. This may require an NHRI to compel testimony and witnesses, and is best suited for NHRIs that have investigative powers. 105 NHRIs can also hold a (non-coercive) inquiry to understand the extent to which persons with disabilities are able to access support services, or the extent to which they experience isolation and segregation from the community contrary to article 19(b) of the CRPD.
As part of their mandate to protect human rights, many NHRIs can intervene in court proceedings as a ‘friend of the court’ in cases involving significant human rights issues.106 Some NHRIs can also initiate cases that are either of broad public interest or that would have a significant impact on advancement of human rights.107 This includes rights of persons with disabilities, including their right to live independently in the community.
The historical development and proliferation of national human rights institutions (NHRIs) as documented in this article demonstrates wide acceptance that NHRIs are a central pillar in the protection and promotion of human rights at national level. The Paris Principles remain central towards assessing the effectiveness of an NHRI and the ability of an NHRI to perform its function of promoting, protecting and monitoring the rights provided under the UN Convention on the Rights of Persons with Disabilities (CRPD).
Globally, it is well documented that persons with disabilities have historically been denied personal and individual choice and control across all areas of their lives.108 The situation in Africa is no different, as has been demonstrated by the review of Concluding Observations to 13 African countries carried out in section 3 above. To reverse this historical injustice and redress the abandonment, over-dependence on family, institutionalisation, isolation and segregation experienced by persons with disabilities requires concerted efforts from state and non-state actors including NHRIs.
This article has identified critical ways in which NHRIs can advance article 19 of the CRPD. These include advocating for a well-defined legislative framework on deinstitutionalisation and independent living community support services and promoting compliance with obligations under treaties relating to human rights. Other roles that NHRIs can play in this regard include monitoring under article 33(2) of the CRPD, receiving and investigating complaints about alleged violations of article 19 and playing their function in advancing economic, social and cultural rights generally. In addition to these roles, NHRIs should fully utilise their mandate to advance the right of persons with disabilities to live in the community. This may be achieved through educating and informing state and non-state actors about article 19 of the CRPD, holding public inquiries on issues related to article 19 and intervening in court proceedings in order to promote this right.
In conclusion, the right of persons with disabilities to live independently in the community should be considered a priority issue, including in resource allocation. Resource allocation should cover all the important elements of this right, including choice of a place of residence on an equal basis with others; the provision of support services to enable inclusion in the community, including for persons who require a high level of support; and responsiveness of community services and communities to the needs of persons with disabilities. Finally, NHRIs that are designated as monitoring agencies under article 33(2) of the CRPD should receive adequate funding to enable them monitor the entire gamut of rights guaranteed under the CRPD.
1. GD Beco ‘Article 33(2) of the United Nations Convention on the Rights of Persons with Disabilities: Another role for national human rights institutions’ (2011) 29 Netherlands Quarterly of Human Rights 84 at 93.
3. To illustrate, general guides on the CRPD and on the role of NHRIs in advancing the rights of persons with disabilities make no reference to the potential role of NHRIs in advancing article 19 of the CRPD eg: Network of African National Human Rights Institutions Guide for African national human rights institutions on the implementation of the Convention on the Rights of Persons with Disabilities (2014) at 2; United Nations Office of the High Commissioner for Human Rights The Convention on the Rights of Persons with Disabilities training guide professional series no 19 (2014) at 2.
4. The following African countries have National Human Rights Institutions accredited as fully compliant with the Paris Principles as at 1 March 2020: Cameroon, Democratic Republic of Congo, Egypt, Ghana, Kenya, Liberia, Madagascar, Malawi, Mauritius, Morocco, Namibia, Niger, Rwanda, Sierra Leone, South Africa, Tanzania, Togo, Uganda, Zambia and Zimbabwe. Global Alliance of National Human Rights Institutions ‘Chart of the status of national institutions’ (27 November 2019) at 3-7 https://nhri.ohchr.org/EN/AboutUs/GANHRIAccreditation/Documents/Status% 20Accreditation%20-%20Chart%20%28%2027%20November%202019%29.pdf (accessed 1 March 2020).
6. MA Stein, J Feffer & JE Lord ‘Ratify the UN disability treaty’ (9 July 2009) https://fpif.org/ratify_the_un_disability_treaty/ (accessed 23 July 2020).
8. European Coalition for Community Living ‘Focus on article 19 of the UN Convention on the Rights of Persons with Disabilities’ (Focus Report 2009) http://community-living.info/wp-content/uploads/2014/02/ECCL-Focus-Report-2009-final-WEB.pdf (accessed 27 October 2019).
10. United Nations, Department of Economic and Social Affairs ‘Standard rules on the equalization of opportunities for persons with disabilities’ https://www.un.org/development/desa/disabilities/standard-rules-on-the-equalization-of-opportunities-for-persons-with-disabilities.html (accessed 27 October 2019).
14. Dag Hammarskjöld ‘What is the purpose of the Human Rights Treaty Bodies general comments?’ 06 January 2020 https://ask.un.org/friendly.php?slug=faq/135547 (accessed 26 July 2020).
30. Article 38 of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa provides that the protocol shall enter into force 30 days after the deposit of the 15th instrument of ratification. As at 18 December 2019, the Protocol had not been ratified by any county, but had already registered six signatures namely by Burkina Faso, Central African Republic, Gabon, Rwanda, South Africa and Togo.
34. Concluding Observations on the Initial Report of Kenya, Committee on the Rights of Persons with Disabilities (30 September 2015) UN Doc CRPD/C/KEN/CO/1 (2015);Concluding Observations on the Initial Report of Mauritius, Committee on the Rights of Persons with Disabilities (30 September 2015) UN Doc CRPD/C/MUS/CO/1 (2015); Concluding Observations on the Initial Report of Uganda, Committee on the Rights of Persons with Disabilities (12 May 2016) UN Doc CRPD/C/UGA/CO/1 (2016); Concluding Observations on the Initial Report of Gabon, Committee on the Rights of Persons with Disabilities (2 October 2015) UN Doc CRPD/C/GAB/CO/1 (2015); Concluding Observations on the Initial Report of Tunisia, Committee on the Rights of Persons with Disabilities (13 May 2011) CRPD/C/TUN/CO/1 (2011); Concluding Observations on the Initial Report of Ethiopia, Committee on the Rights of Persons with Disabilities (4 November 2016) UN Doc CRPD/C/ETH/CO/1 (2016); Concluding Observations on the Initial Report of South Africa, Committee on the Rights of Persons with Disabilities (23 October 2018) UN Doc CRPD/C/ZAF/CO/1 (2018); Concluding Observations on the Initial Report of Senegal, Committee on the Rights of Persons with Disabilities (13 May 2019) UN Doc CRPD/C/SEN/CO/1 (2019); Concluding Observations on the Initial Report of Rwanda, Committee on the Rights of Persons with Disabilities (3 May 2019) UN Doc CRPD/C/RWA/CO/1 (2019); Concluding Observations on the Initial Report of Niger, Committee on the Rights of Persons with Disabilities (1 May 2019) UN Doc CRPD/C/NER/CO/1 (2019); Concluding Observations on the Initial Report of Morocco, Committee on the Rights of Persons with Disabilities (25 September 2017) UN Doc CRPD/C/MAR/CO/1 (2017); Concluding Observations on the Initial Report of Algeria, Committee on the Rights of Persons with Disabilities (27 June 2019) UN Doc CRPD/C/DZA/CO/1 (2019); Concluding Observations on the Initial Report of Sudan, Committee on the Rights of Persons with Disabilities (10 April 2018) UN Doc CRPD/C/SDN/CO/1 (2018).
36. Concluding Observations on the Initial Report of Uganda (n 34) para 38; Concluding Observations on the Initial Report of Kenya (n 34) para 37; Concluding Observations on the Initial Report of Morocco (n 34) para 38(a); Concluding Observations on the Initial Report of Algeria (n 34) para 32.
39. Concluding Observations on the Initial Report of South Africa (n 34) para 34; Concluding Observations on the Initial Report of Morocco (n 34) para 38(d); Concluding Observations on the Initial Report of Sudan (n 34) para 39.
40. Concluding Observations on the Initial Report of Uganda (n 34) para 38; Concluding Observations on the Initial Report of Kenya (n 34) para 37; Concluding Observations on the Initial Report of Ethiopia (n 34) para 43; Concluding Observations on the Initial Report of Morocco (n 34) para 38(b); Concluding Observations on the Initial Report of Gabon (n 34) para 44.
41. Concluding Observations on the Initial Report of Uganda (n 34) para 38; Concluding Observations on the Initial Report of South Africa (n 34) para 34; Concluding Observations on the Initial Report of Senegal (n 34) para 33; Concluding Observations on the Initial Report of Morocco (n 34) para 38(c).
54. United Nations Office of the United Nations High Commissioner for Human Rights ‘National human rights institutions: History, principles, roles and responsibilities’ (2010) Professional Training Series No 4 13.
59. The Kenya National Commission on Human Rights (KNCHR) is an Independent National Human Rights Institution with ‘A’ Status Accreditation. It is established under the article 59 of the Constitution and operationalised under the Kenya National Commission on Human Rights Act, 2011 (revised 2012). The Commission carries out functions under its founding Act and the Prevention of Torture Act, 2017.
62. Concluding Observations on the Initial Report of Rwanda (n 34) para 36; Concluding Observations on the Initial Report of Algeria (n 34) para 33; Concluding Observations on the Initial Report of Sudan (para 34) para 40.
64. J Mertus ‘Evaluating NHRIs: Considering structure, mandate and impact’ in R Goodman & T Pegram (eds) Human rights, state compliance and social change: Assessing national human rights institutions (2012) at 77.
66. D Meyer ‘National human rights institutions, opportunities and activism’ in R Goodman & T Pegram (eds) Human rights, state compliance and social change: Assessing national human rights institutions (2012) at 328.
67. The Danish Institute for Human Rights ‘Challenges in NHRI effectiveness’ https://www.humanrights.dk/learning-hub/challenges-nhri-effectiveness (accessed 27 July 2020)
71. Concluding Observations on the Initial Report of Uganda (n 34) para 39; Concluding Observations on the Initial Report of Rwanda (n 34) para 36; Concluding Observations on the Initial Report of Morocco (n 34) para 39(c).
72. Concluding Observations on the Initial Report of Kenya (n 34) para 38(c); Concluding Observations on the Initial Report of Senegal (n 34) para 34(d); Concluding Observations on the Initial Report of South Africa (n 34) para 35(c); Concluding Observations on the Initial Report of Morocco (n 34) para 39(c); Concluding Observations on the Initial Report of Sudan (n 34) para 40.
76. Kenya National Commission on Human Rights ‘Kenya National Commission on Human Rights (KNCHR) Third Cycle UPR report’ https://www.knchr.org/Portals/0/InternationalObligationsReports/KNCHR%203RD%20CYCLE%20UPR%20REPO RT.pdf?ver=2019-07-22-084058-850 (accessed 30 March 2020).
78. J Lhotský ‘Human rights treaty body review 2020: Towards an integrated treaty body system’ 10 https://www.geneva-academy.ch/joomlatools-files/docman-files/Jan% 20Lhotsk%C3%BD%20-%20Towards%20an%20Integrated%20Treaty%20Body%20 System.pdf (accessed on 26 July 2020).
81. World Health Organisation ‘QualityRights Toolkit’ https://www.who.int/mental_health/publications/QualityRights_toolkit/en/ (accessed 27 October 2019).
82. So far, the following mental health facilities have been assessed in the 2019/2020 financial year: Mathari National Teaching and Referral Hospital, Moi Teaching and Referral Hospital, Port Reitz Psychiatric Unit and the Jaramogi Oginga Odinga Teaching and Referral Hospital.
83. United Nations Office of the High Commissioner for Human Rights ‘Assessing the effectiveness of National Human Rights Institutions’ (2005) 22 https://www. ohchr.org/Documents/Publications/NHRIen.pdf (accessed 26 July 2020).
96. Concluding Observations on the Initial Report of Kenya (n 34) para 38; Concluding Observations on the Initial Report of Gabon (n 34) para 45; Concluding Observations on the Initial Report of Algeria (n 34) para 33.
99. United Nations Division for Social Policy Development & Department of Economic and Social Affairs ‘Toolkit on disability for Africa: Culture, beliefs and disability’ 6 https://www.un.org/esa/socdev/documents/disability/Toolkit/Cultures-Beliefs-Disability.pdf (accessed 27 July 2020).
104. United Nations Department of Economic and Social Affairs ‘Disability’ https://www.un.org/development/desa/disabilities/resources/handbook-for-parliamentarians -on-the-convention-on-the-rights-of-persons-with-disabilities/chapter-seven-creating-national-institutions-to-implement-and-monitor-the-convention-3.html (accessed 27 July 2020).
106. Asia Pacific Forum of National Human Rights Institutions ‘Fact sheet 8: Responsibilities and functions of NHRIs: Intervening in court proceedings’ https://www.asiapacificforum.net/support/what-are-nhris/fact-sheet-8-responsibilities-and-functions-nhris-intervening-court-proceedings/ (accessed 27 July 2020).
107. Kenya National Commission on Human Rights ‘Legal Services’ https://www. knchr.org/Our-Work/Legal-Services (accessed 27 July 2020).
- Kenneth Kapalu Muzata
- Department of Educational Psychology, Sociology and Special Education, University of Zambia
- KK Muzata ‘Interrogating parental participation in the education and general development of their deaf children in Zambia’ (2020) 8 African Disability Rights Yearbook 71-100
- Download article in PDF
Parents have a critical role to play in the education of their children. Their participation is likely to facilitate positive academic achievement and optimal development. In any case, parents’ participation is a gateway to realising full inclusion of Deaf children in schools. This study interrogated the participation of parents and guardians in the education and general development of their Deaf children. A survey of 85 parents and guardians was conducted in seven districts of six provinces in Zambia. A mixed-method approach was employed. Closed and open ended questionnaires were used to collect both quantitative and qualitative data. The Statistical Package for Social Sciences (SPSS) version 16 was used to analyse quantitative data. From the quantitative analysis, frequencies, percentages and correlations between variables such as sex and data on the relationship and the desire to learn Sign Language were obtained. A Chi square test of independence helped to establish possible relationships. Verbatim excerpts from qualitative data were used to support quantitative data. The results showed that parents and guardians of Deaf children faced challenges in communicating with their children. Further, parents’ participation in the education of Deaf children was limited by difficulties in communication and lack of support from experts. No significant differences were observed between male and female parents and guardians in relation to knowing Sign Language as the main challenge they faced. The study concluded that the realisation of full inclusive education should start from home. Based on the results, it was recommended that the Ministry of General Education and other stakeholders should provide outreach services which include lessons in Sign Language for parents to enhance their participation in the education and general development of Deaf children.
The concept of inclusive education has been embraced by the Zambian government and there is ample evidence of domestication of the laws through the Disability Act of 2012 and education policies that talk about inclusive education in the country.1 Particularly, the 1996 Educating Our Future policy document on education laid the foundation for the implementation of inclusive education in Zambia. The Zambia 2012 Disability Act categorically prohibits discrimination of persons with disabilities and guides schools and other institutions to be inclusive while considering reasonable accommodations that make inclusion realistic not only in education but also in all institutions in the country.2 However, while the Disability Act of 2012 clearly explains how persons with disabilities should be treated in government institutions, the family as an institution appears not to have been directly addressed on how inclusive it should be, yet, it should not be ignored that discrimination may start at family level. Ignoring the family in the inclusive agenda leaves more of the grave causes of disability to be a creation of society. Thus, the social model continues to hold society responsible for causing and worsening disability.3 For instance, children who are Deaf face barriers in communication within their families, barriers that are not created by the children themselves but by the family’s failure to learn Sign Language (SL). As such Deaf children may find themselves discriminated against within their own family, yet they have an alienable right to belong to family.
The 1989 Convention on the Rights of the Child (CRC) clearly states the principles of non-discrimination, respect for the child’s interests, survival and development and respect for the child’s views.4 The United Nations Convention on the Rights of Persons with Disabilities (CRPD), which came into force in 2008, has eight principles for inclusion.5 These are non-discrimination, equality of opportunity, full and effective participation, respect for differences and acceptance of persons with disabilities as diversity and accessibility, equality between men and women, respect for inherent dignity to make choices and respect for evolving capacities and identities of persons with disabilities.6 The main aim of the CRPD is to realise a full development of the potential of all persons with disabilities. How would such principles be realised if the family is left ignorant about the rights of their own child and without the communication abilities to engage with their child who may be Deaf? How would the child who has a hearing impairment express his or her views and interests to parents who do not understand the child’s language? These questions appear to be ignored in research, policies and laws. Inclusive education entails that Deaf children participate in the daily activities of their lives in the family and in the community. Participation is not merely placing a person with a disability in the mainstream.7 Article 24 of the CRPD says access to the mainstream for persons with profound disabilities can be realised when nations address specific needs of children with severe and complex sensory impairments such as SL, Braille and low-vision aids.8 In this paper, I examine the barriers in communication between parents and Deaf children and the nature of difficulties they face. Since there are different categories of hearing impairment (mild, moderate, severe and profound) I have to some extent avoided the use of the term hearing impairment because this study focused only on Deaf children who depend on SL to communicate. However, in some cases, the term ‘hearing impairment’ has been used to refer to the impairment.
Zambia is a signatory to major world conventions on the rights of persons with disabilities such as the CRPD and is committed to meeting the 2030 sustainable development goal on education that emphasises inclusiveness, equity and lifelong learning.9 However, realising the goal requires collaborative effort of government ministries and departments, Non-Governmental Organisations and the Zambian community at large. In particular, parents of Deaf children in Zambia should be part of the inclusive agenda. The progress Zambia has made in the provision of education and policies that are aimed at improving the lives of persons with disabilities cannot be ignored.10 After independence, the first major Act in education, (The Education Act, 1966) seemed to ignore special education. The Act allowed for the establishment of a National Council of Education at national, regional and local levels.11 Education was offered at primary, secondary and tertiary levels through public, private and grant aided institutions.12 There was no mention of special education as a subject or as a mode of delivery in the Act. However, the Act provided for the minister to authorise the teaching of any other subject that was not listed.13 If this was well interpreted, it would have offered special education a chance for recognition within the 1966 Education Act. However, even if special education were to be recognised, the laws at the time were not flexible enough to support learners with disabilities. For instance, the Act did not allow learners to repeat any other grade apart from grades four or five or grade ten or 12 and no child was allowed to repeat a grade more than once.14 In turn it did not take cognisance of learners with disabilities who may need to repeat some grades several times and may need more time to learn a subject. Over the years, Zambia, through the Ministry of General Education has scored a number of successes through policy pronouncements on the education of persons with disabilities. The Education Reforms and Recommendations of 1977 made emphasis on the provision of special education to learners with disabilities.15 For special education reforms emphasised the significance of assessment, design of curricula and teaching materials. Further, the document prescribed suitable building infrastructure for learners with disabilities. The main categories of disabilities considered then were those with physical, intellectual, hearing and visual disabilities.16 The 1992 Focus on learning policy document advanced that every child should learn through inclusive education.17 The 1996 Educating our Future policy document pronounced the provision of special education in Zambia premised on equal educational opportunities for children with special education needs, quality education provision, and effective supervision and monitoring of special education. 18
Several strategies were identified on how best to meet equality and the quality of education provision for learners with special education needs. Learners with special education needs in Zambia refer to learners with disabilities including learners with hearing impairment.19 This includes learners who are Deaf. Among the strategies were decentralisation of services, assessment and placement of children with special educational needs, integration of the learners with special educational needs in the mainstream, cooperating with religious, private, community and philanthropic organisations.20 Of all the strategies, none points directly to working with parents of children with disabilities. However, one statement in the policy that came close was the provision of outreach services to children whose disabilities prevent normal attendance in school.21 The outreach services concept if well implemented would ensure that the gap at the centre of this study would be covered and inclusion would turn into reality especially for Deaf learners.
Further, the inclusive education and special education guidelines for Zambia highlight parental involvement in terms of participating in the development of the Individualized Education Programmes (IEP), assessment procedures, having access to assessment reports and monitoring the performance of their children with special educational needs.22 The document does not address how parents of Deaf children would get involved when they (parents) have a limitation in SL. The success of the inclusive education policy and the realisation of the rights for Deaf children should also be measured by the participation of parents in the education of their children. SL is crucial for Deaf learners to access the curriculum. SL is the best medium through which the curriculum can be delivered to deaf learners. The participation of parents in the education of their Deaf children is one of the best strategies to achieve curriculum access. The Ministry of General Education in Zambia is making efforts to train teachers to teach learners with hearing impairments and other disabilities in colleges and universities. Although the Ministry of General Education in Zambia recognises the invaluable contribution of parents to children’s education by providing knowledge and supportive environment,23 efforts to support parents of Deaf children have not been documented. Support for parents to provide a strong foundation for their children’s education is needed before and during their time in and out of school.
Parents have a critical role to play in not only education, but also the overall development of their children who are Deaf. They play a big role in helping their children do homework and interact with them in daily routines. However, with SL as a barrier, parents cannot afford to help their children in school work and overall daily interaction. Significant degrees of isolation of Deaf children in hearing families by their immediate, extended families and communities have been reported.24 For a child to attain optimum development, interaction with family members is crucial. There are two major categories of Deaf children: those who are born without a sense of hearing (congenitally Deaf) or become Deaf early enough before they acquire language (Pre-lingually Deaf); and those who develop hearing impairment after acquiring language (Post-lingually Deaf). Some children with post lingual hearing impairment are able to communicate using speech although they cannot hear depending on the age at which they lose their sense of hearing. They depend on lip reading to get what another person is saying.25 Whatever the case, communication becomes limited when the sense of hearing is inhibited by any form of circumstance. For Deaf children, from birth, their development is likely to be adversely impaired once parents and family members who are the first agents of socialisation fail to engage them in developmental socialisation. According to Bronfenbrenner’s ecological systems theory children’s development takes place within a context of environmental influences that have direct or indirect effects on them.26 Bronfenbrenner’s theory explains that children do not develop in isolation. The immediate family context is crucial in the child’s development.27 What brings children closer to their family in addition to the basic needs is language. Language is a vehicle for interaction that facilitates child development within a family context and beyond. Bonding, social, emotional, cognitive and linguistic development of children is dependent on communication with the children. Deaf children like other children without disabilities need to experience the sense of love and belonging from their immediate families and neighborhood.28 They need to interact not only with their parents, but also with the rest of the family members and beyond. However, when a communication barrier is experienced between parents and their children with severe hearing loss, the children are more at risk of the negative impact of communication on their development. Ordinarily, failure by parents to communicate with their children who have severe hearing impairment may be construed by the affected children as a lack of being loved. Language provides a foundation for communication, problem solving, analysis and other higher level cognitive skills.29 Therefore deficits in language can have a profound negative impact on an individual’s ability to learn and function competently and confidently in the environment. Learning starts from home. Before a child goes into school, they acquire a substantial amount of concepts from the interaction they have at home. If language becomes an inhibition to communication in a home, children, especially those with severe hearing impairment will get into school with many difficulties.
Though limited studies have been conducted in the area of parenting children with hearing impairment, available literature reveals that most of Deaf children born from hearing parents lag behind in development because parents do not know SL. Lack of skills in SL among hearing parents was a major reason that contributes to the majority of Deaf children growing up with limited access to SL as well as spoken language.30 If language is not well developed in childhood, it goes further to affect the academic performance of children when they enter school. Language helps humans to interact, a social factor necessary for child development. Deaf children may face challenges communicating with peers who do not know SL. Social factors may contribute to a child’s stress and consequently interfere with learning.31 This may eventually lower the available ability children may inherently have and result in academic dysfunction. Clearly, the importance of language and indeed SL cannot be overemphasised. It is language that enables children to play with peers. Language shows whether one’s pace of cognitive development is normal or not.
Many theories explain the role of the environment in child development. One influential theory that explains the role of the environment in child development is the Ecological Systems Theory by Urie Bronfenbrenner.32 According to this Theory, there are four main layers through which a child’s development can be best explained. These are the microsystem, mesosystem, exosystem and the macrosystem layers.
The family (inner most layer) is the child’s first environment. It is the child’s microsystem context comprising the father, mother, siblings and in some cultures the extended family members. The development of a Deaf child is dependent on the family’s ability to adapt quickly to the disability in the family and help the child develop like other children. Failure to communicate will not only affect the child; it will affect the family as well. For instance, the child would fail to communicate his or her needs to the parents and family members. This may lead to frustrations on the part of the child, who may feel unloved that the needs are not provided without considering the barrier in communication. Reciprocally, parents are equally affected because they feel they do not meet the child’s needs adequately and worry about their child’s development. Thus, they live a life of worry and anxiety as a result.
Acceptance of the disability is dependent on the environment in which the family is situated. For example, it is dependent on the attitudes in the family’s immediate surrounding (mesosystem), and the help anticipated from the exosystem (the school, healthcare and other services). It is also dependent on the extent to which the policies that support the child (macrosystem level) are implemented. For a family with a Deaf child, SL is a basic need. The main concern that relates to this study is policy at the macrosystems level versus the child at the microsystems level. The question is, ‘is there national or local school policy’ that empowers parents of Deaf children in SL? If there is absence of policy about how parents can participate in the development and education of deaf children, the exosystem level in which education as a social service is found would be defective. Thus, education would not provide the needed outreach services to the child in the home. When parents are not empowered through policy and education or specifically when they are not taught SL or provided with the tools to learn the language, they cannot participate in the education and facilitate optimal child development through interaction. Children’s developmental services are better provided to the people in the child’s life. The people who are directly involved in the child’s life are parents and guardians. One of the most important and early support services to those involved directly in the child’s life is language.
For a Deaf child, the provision of SL teaching to parents would overcome possible communication barriers and facilitate smooth interaction between the child and parents. Mitchell suggests that parents of children with disabilities require training in various areas to help them cope with the disabilities their children have.33 Mitchell further suggests behavioural parent training and parent-child interaction therapy among others as areas parents need support in.34 For parents of Deaf, training in SL would be a key support service professionals can provide. There are three main forms of support for families, namely emotional support, material and informational support.35 For parents of Deaf children, the anxiety they experience as a result of failing to communicate with their own children needs to be addressed with counseling as an emotional support. Parents may also need material support in the form of hearing aids for children with residual hearing or financial support to allow parents take their children for expert advice. Informational support includes knowledge of the impairment, it causes and how children react so that parents come to understand their children and stop negative labeling.
Several strategies should be employed to help parents of Deaf children learn SL. For instance, Starner and Weaver listed books, DVDs, websites and evening classes as some of the ways to help reach out to parents of Deaf children to teach them SL.36 Starner and Weaver reported the increase in popularity of parents using websites to learn SL. Most websites provide a dictionary; however, some are not browsable without first acquiring a login which may cost money.37 Further, parents did not favour using books to learn SL because books were difficult to understand. DVDs were still more popular among parents than books.38 The use of websites requires an effective fast internet service. Poeppelmeyer and Reichert reported educators in Texas’ successes in teaching parents of Deaf children SL through videophones, although access to fast internet was a challenge for some parents. The use of iPads, videophones, computers, Skype and ooVoo proved to provide parents access to SL lessons.39 Currently, Skype and many other social media video conferencing facilities provide free service and if parents had access to the facilities and internet, learning of SL would not be a problem. Although not all parents can afford to access internet in the Zambian context, there are families that may have access to such facilities, but lack knowledge about how the facilities can be used as a resource for learning SL. DVDs and VCDs may be affordable by Zambian parents who have access to the SL video download. Parents need support with facilities such as computers, iPads, and video-phones to learn SL. Such facilities have been reported being provided to American parents of Deaf children through higher education institutions, schools for the Deaf, and churches. However, Mutswanga observed that some parents were not in favour of the credits attached to taking the lessons while others reacted favourably to the fun games that were played during lessons.40
A study of effective communication strategies for Deaf learners in Zimbabwe by Mutswanga, found that the majority of persons with profound hearing loss considered visual cues as an effective tool to communication, among other strategies, such as use of sign interpreters. However, the use of interpreters in the case of parents and guardians of Deaf children may not be sustainable. The use of such a strategy means that parents need to continuously depend on interpreters to interact with their child, which may not be sustainable because interpreters may not always be available. Even then, the use of an interpreter puts an artificial barrier in between the bond that should exist between parents and the child in their interaction. The best alternative for parents and guardians of Deaf children is learning SL so that they directly interact with the children.
Another intervention is cochlear implants. In the developed world, hearing impairment may not present serious challenges because cochlear implants have aided Deaf children to be able to learn speech and communicate ordinarily with family members and beyond. For instance, in the United States of America, cochlear implantation, is an effective technology for reducing hearing loss. It is a common technology used in the United States of America, although many Deaf people do not utilise technology because they prefer to promote the use of SL. Other reasons for low utilisation are low awareness of the benefits of cochlear implants among the population and healthcare professionals; the lack of specific referral pathways; some political issues relating to the Deaf Community; and financial constraints.41 The reasons for low or non-uptake of the cochlear implant service in the underdeveloped world resides in the non-availability of cochlear implant technologies, experts and lack of affordability in terms of finances to access the service,42 yet the majority of people with hearing impairment live in the developing world. The higher cost of cochlear implants in the developing world is a major prohibiting factor for access to the service. 43
In Nigeria for instance, technology for Cochlear implants is reported to be too expensive for parents of Deaf children to afford.44 The situation in Nigeria may not be any different from Zambia especially because Zambia is a third world country. The attainment of inclusive education can be made more possible when parents are empowered with skills to help them communicate and interact with their children with disabilities to facilitate development. This study was therefore conducted to establish the experiences families of children who are Deaf face in communicating with Deaf children in Zambia.
The purpose of this study was to establish factors that affect parents’ participation in the education and general development of their Deaf children. By establishing parents and guardians’ experiences, the factors that affect their participation in the education and general development of Deaf children can be established. The study was guided by the following objectives:
- To examine whether parents and guardians were able to communicate with their Deaf children or not.
- To establish the different types of communication styles parents and guardians use to communicate with their Deaf children.
- To establish parents and guardians’ perceptions about their Deaf children.
- To establish parents and guardians understanding of the impact of communication difficulties on the development of Deaf children.
- Are parents and guardians of Deaf children able to communicate with their children?
- What types of communication styles are used by parents and guardians to communicate their Deaf children?
- What are the perceptions of parents and guardians of deaf children towards their Deaf children?
- Do parents understand the impact of communication barrier on their Deaf children?
When a researcher chooses to use mixed methods, consideration should be made that there are qualitative questions and quantitative questions or hypothesis.45 Since this study adopted the mixed-methods approach, the following assumptions were framed:
- Female parents and guardians communicated with deaf children in SL with fewer difficulties than their male counterparts.
- Female parents and guardians were more willing to learn SL than their male counterparts.
- Parents were more positive about learning SL than guardians.
- Parents do not understand the impact of the communication barrier on Deaf children.
The assumptions emanate from both literature and cultural beliefs that females are either more troubled by or more caring than males when a child with a disability is born in a home.46 However, Giulio, Philipov and Jaschinski observed that generally couples with a child who has disability are more frequently unstable, more often forego their fertility intentions, more frequently suffer from economic difficulties, show more traditional gender-role arrangements, are more frequently in bad health, and have lower well-being than families without disabilities.47
In an investigation of North West Arkansas parents’ attitudes and stress levels of parents involved in the hands and voices programme, parents moderately agreed that it was stressful learning a new modality to communicate with their children and language was said to be the barrier.48 Other studies report that parents of Deaf children do not report much stress levels as was reported by parents of hearing children.49 This study points to the attitudes towards learning SL by parents. There are also notions held against Deaf children that they are generally short tempered or aggressive. However, a study by Hankins on social interaction between Deaf and Hearing people found that the data did not support the hypothesis that the responses of people with hearing ability would reflect negative attitudes and beliefs about Deaf people.50 Such beliefs can better be dispelled through studies that provide checks through correlations, hence a portion of the assumptions were to detect parents and guardians perceptions towards Deaf children.
A total of 85 respondents were targeted in seven districts of six provinces in Zambia. Respondents were purposively sampled through a snowball technique. This technique, also called chain sampling, is used when a researcher uses the first participant to direct him or her to other participants with similar characteristics for a study.51 This is because it was difficult to locate families that had Deaf children in each area. Therefore, the need to identify the first respondent was cardinal to lead the researchers to other respondents. Purposeful sampling is known for its effectiveness in collecting the desired information from targeted respondents known to possess such information.
This study employed the mixed method design. Mixed methods involve the use of quantitative and qualitative methods together to study a research problem.52 However, the study was mainly influenced by the quantitative approach while the qualitative acted as a support approach to the quantitative data. Data were collected by the use of closed- and open-ended survey questionnaires. A questionnaire is known for its strength in collecting large amounts of data from a wider population. Questionnaires have enormous advantages including collection of information from large sample and diverse regions.53 This helps in data generalisation and arriving at deductive conclusions. The questionnaire collected demographic data and data for the main research questions. The demographic data provided characteristics of the respondents such as the districts where they were drawn from, their sex, whether they were in formal or informal employment and the grade levels of the Deaf children they were keeping. The first main research question was meant to determine the extent to which parents and guardians were able to communicate with Deaf children. Thus respondents were asked to tick ‘Yes’ or ‘No’ and ‘Yes, but not very well’. Respondents who answered ‘“Yes’ to the first question were further asked to tick from options whether they were able to communicate with Deaf children. A scale was provided and respondents were required to tick ‘Well’, ‘Very well’ and ‘Well, but with difficulties’.
The second research question sought to find out what strategies respondents used to communicate with the Deaf children. Some strategies were outlined for selection, but space was provided for respondents to write other strategies that did not appear on the list. The outlined strategies were pointing, dragging the person, writing on the ground, lip reading, and writing on a piece of paper. The third question was to establish the perceptions of the respondents towards Deaf children. They were asked questions about how the children reacted when there was communication breakdown between them and how they (parents and guardians) reacted in return. The listed reactions were: getting annoyed, smiling and withdrawing. Respondents were required to write any other reactions that were not listed. Respondents were further asked on their general perceptions about the temperament of Deaf children. The question regarding temperament had three options, ‘Yes’, ‘No’ and ‘Sometimes’.
The survey instrument further collected data on the respondents understanding of the impact of lack of SL on their part as parents and guardians on the Deaf children. This was an open ended question meant to examine their understanding. Open ended questions provide rich information about attitudes, ideas and values that people hold.54
The other question on the survey instrument asked about the respondents’ willingness to learn SL. The question required ‘Yes’ and ‘No’ responses. This was meant to help the researcher verify the genuineness of the responses they were giving to earlier questions and to determine their attitudes towards learning SL. Respondents who were not willing to learn SL were further asked to indicate the reasons. The last question was on suggestions to help them learn SL if they were willing to learn.
While the respondents answered most questions, some questions were not answered. This did not affect validity and reliability of the data because on each questionnaire, either all or more than three quarters of the questions were answered.
The researcher collected data from Lusaka and Central provinces while research assistants collected from the Southern, Eastern, Copperbelt and Northern Provinces. The research assistants, who were research students in their final undergraduate year of study at the University of Zambia, were trained before they went to administer the questionnaires. Guidance was given to research assistants to help them read questions and write responses for respondents who were not literate. To ensure high return rate of the questionnaires, research assistants were advised to administer and collect the completed questionnaires immediately after respondents answered.
Data analysis started with researcher triangulation checkups of the questionnaires that were received. First perceptions indicated similar and natural responses from the various research sites. This was a prior assurance of reliability and validity. Completion rates were satisfactory though not 85-100 per cent, but good enough for quantitative data analysis and drawing conclusions. Missing numbers were too few to affect generalisation. All questionnaires had most questions answered. After data cleaning, categorising and identification of variables, quantitative data were entered in Statistical Package for Social Sciences (SPSS version 16) for analysis. Part of qualitative data were transformed into variables and coded into SPSS as quantitative data to derive frequencies and percentages. This practice is allowed in mixed-methods research.55 Other qualitative responses were typed under identified themes within the research objectives and questions. Descriptive statistics, frequencies and cross tabulations were run to make sense of the data. A non-parametric test, the Chi square test of independence was used to run associations between data and to test the assumptions made. For instance, a test was run to determine whether there were significant differences between males and females’ ability to use SL and willingness to learn SL. A further test was run to determine whether the type of relationship between the parents and Deaf children was related to their willingness to learn SL. The phi (ⱷ) was used to determine the strength of any possible relationship or association. The alpha (α) significance level used was .05.
The study conducted in 2017 collected data from 85 respondents in seven districts of six provinces. Demographic data collected related to districts where the respondents were drawn from, sex, grade level of Deaf children, and whether the parents and guardians were in formal or informal employment. The demographic data helped in data analysis by running some relationships in some cases while part of it remained informative. Table 1 shows the demographic frequencies and percentages of the respondents for this study.
From Table 1, it is evident that Deaf children are prevalent in the country. The table further shows that some Deaf children were not in school and the relationships of parents and guardians with Deaf children were varied. Only 41-48.3 per cent Deaf children lived with their biological parents.
Respondents were asked to indicate whether they were able to communicate with the Deaf children in their families. The results were cross tabulated and a Chi square test run to determine whether there were significant differences between males and females and their ability to communicate with the Deaf children in their home. Table 2 shows the results:
Generally, the results show that most parents and guardians were not able to communicate with Deaf children due to lack of SL. Most respondents, 33-40 per cent, were not able to communicate; 31-37 per cent were able to communicate, but not very well; while 19-23 per cent were able to communicate. There were no significant differences between male and female respondents and the ability to communicate with Deaf children. Chi-square results showed (χ2 (2, N = 84) = .937, p = .626 >.05). This means sex was not related to their ability to use SL, thereby dispelling the assumption that, ‘female parents and guardians communicated better with Deaf children in SL than their male counterparts’.
7.3 Research Question 2: What are the types of communication styles used by parents and guardians to communicate with Deaf children?
Respondents were further asked about the strategies respondents were using to communicate with Deaf children in their homes. From the results, parents used pointing, lip reading, looking at the person directly, writing on the ground, dragging the person and writing on a piece of paper. The most common form of communication used by parents and guardians was pointing; 34-45 per cent. From all the forms of communication used by parents, none provides fluent and complete interaction. There are limitations involved when communicating using pointing, lip reading and writing. Thus, fluency in communication is restricted. For instance, pointing to objects as a form of communication may not give full meaning. Lip reading also has its own limitations which includes misinterpretation. One of the parents recounts:
I use pointing to send her to pick what I want, sometimes writing on the ground but you see it’s not easy for the child always to understand what you want fully. This is the problem we face.56
When I use lip reading, this is a problem. You find that the child is just looking at you. You have to repeat and you end up getting frustrated just on simple things.57
Lip-reading can best be used when accompanied with cued speech to clarify the ambiguities that lip reading poses.58 In any case, lip reading is more suitable for Deaf persons who have previously learnt speech than those who have no previous knowledge to lip read a language they cannot hear.59
7.4 Research Question 3: What are the perceptions of parents and guardians about communication with Deaf children?
The third question required respondents to give their perceptions about Deaf children. To collect data for this question, respondents were asked to state how Deaf children react when there was a breakdown in communication. They were further asked to indicate ‘Yes’ or ‘No’ to whether they perceive Deaf children as short tempered or not. The parents and guardians were also asked how they reacted to communication breakdown with Deaf children. Figure 2 shows frequencies and percentages of the different reactions that they demonstrated:
From the results, most parents reported that Deaf children reacted angrily when there was a communication barrier. Other reactions that parents indicated were smiles and withdrawal behaviour. The perception that their children mostly get annoyed leads to negative labels such as ‘children who are deaf are short tempered’. Figure 3 shows results to the question on whether parents regarded Deaf children as short tempered or not:
Respondents’ perceptions towards their Deaf children’s temperaments differed. Forty to 48 (40-48 per cent) believe deaf children are short tempered, while 16-19 per cent believe they are not short tempered, and 27-33 per cent believe Deaf children are sometimes short tempered. Based on the results, there seem to be a building perception that Deaf children (40-48 per cent) were generally short tempered.
Parents mostly reported that they persisted to make Deaf children learn what they wanted them to learn, 37-22 per cent, but they also got frustrated by the failure to have fluent communication with their children, 31-18 per cent. Some parents and guardians gave up when they experienced communication breakdown, thus they just watched, 15 (9 per cent). One parent said, ‘I used to get annoyed when the child could not get what I am saying but I am now used, I understand’.60
7.5 Research question 4: Do parents and guardians understand the impact of communication barrier on Deaf children’s education and development?
When parents and guardians were asked about the impact of communication barrier on the education and general development of Deaf children, results show that parents have some degree of understanding of the impact. Figure 5 shows the frequencies of the responses given by respondents:
From Figure 5, parents and guardians show understanding that Deaf children feel emotionally affected when they encounter communication breakdown, 42-49 per cent. Parents and guardians further understand that the lack of SL also affects school performance of Deaf children and that the children further felt unloved. The following expressions represent parents’ explanations of the impact:
Sometimes I feel guilty, I don’t know whether my child thinks I love him or not because sometimes things just remain hanging because of communication barrier, even with school work we can’t help properly.61
How can they feel loved when you cannot help them with their school work? To me it seems even teachers have problems helping my child because he does not pass most tests and exercises.62
These expressions demonstrate parents’ understanding of the impact barrier to communication has on Deaf children. However, it seems they do not have solutions to the problems they face communicating with Deaf children. Thus, they were further asked to state whether they would be willing to learn SL.
Following the question on whether parents and guardians understand the impact of lack of communication on education and general development of Deaf children, they were asked to state and explain whether they would be willing to learn SL. Table 3 shows the results comparing male and female parents and guardians’ responses:
A significant association was observed in the parents’ perceptions towards learning SL. The Chi square results showed (χ2 (1, N = 84) = 4.046, p = .044 <.05). This shows a significant association. Female parents seemed more willing to learn SL when compared to male parents.
Another Chi-square test was run to determine whether there was a significant association between the type of relationship parents and guardians had with the Deaf children and the willingness to learn SL.
The test showed a positive relationship at (χ2 (5, N = 79) = 11.054, p = .05 =.050). The strength of the relationship, however, lies between medium and large at (ⱷ = .374). What the results bring out is that the closer the relationship with the Deaf child, the higher the willingness to learn SL. Thus, parents were more likely to be willing to learn SL than guardians. From the results, there were brothers and cousins that were not willing to learn SL. Respondents that did not want to learn SL gave reasons of being busy at work and that SL was difficult to learn. For instance, one respondent said, ‘I am usually busy at work. I rarely have time at home so it’s difficult for me I think, unless maybe at weekends’.63 Another respondent said, ‘I think SL is just difficult for me to learn’.64
However, generally from the results, parents’ willingness to learn SL is a positive sign for initiating partnerships and interventions to teach them SL and other skills necessary to facilitate normal development of Deaf children. For instance, one respondent wrote:
I am interested but there is no one to teach so ... there was a time when we started learning SL at our church but that programme just ended, I don’t know what happened.65
Another parent wrote, ‘Through having special programmes at work, I can be helped.’66
Parents made several suggestions of how best they could learn SL. They suggested having SL clubs, going to school to learn SL, having SL books, television lessons, having evening lessons and attaching a special teacher to homes where there were Deaf children. One of the parents mentioned the use of internet to learn SL.
The 2010 Census of housing and population in Zambia reports that 9.2 per cent of the population of persons with disabilities are hard of hearing, 2.5 per cent are both deaf and dumb, while another 2.5 per cent are deaf. Overall, 2 per cent of the Zambia’s population is disabled.67 The 2010 census further reveals that 65.5 per cent of persons with disabilities drop out at primary school level, 24.1 per cent secondary school level, and 8 per cent tertiary level.68 The International Labour Organisation reveals that the employment rates for persons with disabilities in Zambia is lower at 45.5 per cent with most them (80 per cent) employed in the agriculture sector.69 In this study, demographic data shows that 41-48.3 per cent of Deaf children were kept by their own parents, while 39-45.9 per cent lived with other relations such as sisters, brothers, cousins and others. Of the respondents that answered the question on whether they were in formal or informal employment, only 8-9.4 per cent were in formal employment, 12-14.1 per cent were dependents, 25-29.4 per cent were housewives, and 18-21.2 per cent were in informal employment. In this study, most parents and guardians were not in formal employment. In this study, most Deaf children living with parents and guardians were in grades 1-7 (37-43.5 per cent) while 6-7.1 per cent in 8-9 and 20-23.5 per cent were between grades 10-12. Deaf children out of school accounted for 13-15.3 per cent. Since this study purpose was to investigate factors that inhibit parental participation in the education of the deaf children, most of the demographic data helped to reflect on whether the education system is practically inclusive or not.
The results show that most parents and guardians, regardless of sex were not able to communicate or communicate very well with their Deaf children, namely 33-40 per cent was not able to communicate, while 19-23 per cent said they were not able to communicate very well. Only 31-37 per cent said they were able to communicate well with their Deaf children. By sex, there were no significant differences between male and female parents and guardians (p value = .626 > .05). The results still show agreement with other studies70 reporting that most hearing parents have limited access to SL. Although Featherstone argues that females are more concerned and caring about disability in terms of learning SL, this study found no differences between male and female.71 Both male and female parents and guardians had difficulties in communicating with Deaf children. However, a positive relationship was established between males and females when they were asked about their willingness to learn SL, with females being more willing than males. Closer relations such as mother, sisters and brothers were more willing to learn SL than distant relations such as cousins and other relations even though the relationship is medium. The challenges of communication in a home have serious repercussions on the overall development of Deaf children. The fact that no differences were observed between male and female may mean that both sexes qualify for outreach services. This study revealed that families of deaf children lack SL communication skills and are therefore limited in communicating with their children who have hearing impairment. Those that were able to communicate still did so, but with difficulties. The strategies parents and guardians used to communicate with their Deaf children such as pointing, writing on the ground and use of a piece of paper were limiting compared to if they learned SL. Early childhood deafness presents unique and long term challenges which include communication to parents.72
The study revealed that parents understand the impact of lack of SL on the general development of their Deaf children. They were able to explain the impact on the emotional development and academic performance. For instance, from the results, parents and guardians felt frustrated when there was a communication barrier with their children. Thus, while Deaf children are affected emotionally by the lack of communication skills of their parents and guardians, the lack of required skills in turn affected the way parents and guardians reacted to the impairment. However, the parents’ and guardians’ understanding is a positive sign that can help service providers initiate interventions. In this study, parents and guardians seemed to be building up negative perceptions, that Deaf children were generally short tempered. This study revealed that parents reacted with frustration when they encountered communication barriers with their Deaf children. This finding is similar to other studies that report parental frustration when they face communication barriers. For instance, Wood, in a study of the impact of a hearing impairment on family life reports that some parents reported frustration with communication differences and perceived a negative impact of hearing impairment on interaction.73 Family members find it difficult to engage in a conversation with a Deaf child. This failure restricts conversation of issues affecting the family in which a Deaf child is a member.
Frustration resulting from lack of communication also affects the children themselves in that they would struggle to communicate their needs to parents. This study established frustrations on the part of parents who also reported that their children also became frustrated when there was a communication barrier. This is consistent with literature which asserts that children who are not able to communicate their needs or cannot understand instructions from parents are likely to exhibit frustration and parents end up perceiving such children as non-compliant.74 Similar to this study, frustrations between children and family compromise a health microsystem in which a child is expected to grow in love and care. It does not help the child developing within a family to be negatively perceives as a trouble maker or a source of trouble because of the impairment the child has. A negative microsystem negatively impacts the child’s development. It is not correct to think that all Deaf children are short tempered when they equally have different personality dispositions. In many other cases, the facial expressions deaf children show is likely to be misunderstood as temperamental or as negative reaction to what other family members say. Persons with hearing impairment generally use facial and gestural expressions to drive their point home. If such nature of communication is misunderstood as being temperamental, the children would be deterred from communicating their feelings. This can lead to increased stress and anxiety in Deaf children. The microsystem (family level) should be the first friendly and supportive environment for the child’s optimal development.
However, it must be noted that families in the microsystem level also need support from the other levels such as the mesosystem, the exosystem and the macrosystem, levels that Brofenbrenner propounded as crucial to providing developmental support to the child. For instance, parents need education on the basic needs of Deaf children. This nature of support can be provided by schools and other professionals in the field of audiology. National policies, which are a feature of the macrosystem level, need to be seen to not only exist but to be implemented. Parents need various types of support which include counseling, skills, monetary and expert help trickling from the macro level and helping them to be more positive about nurturing Deaf children. From the focus of this study, the key argument is the need to empower parents with SL skills in order to enable good communication between parents and Deaf children. The lack of SL prohibits fluent engagement in discussions and interaction with other people. Quality of communication is an important contributor to the
child’s behavioural problems.75 A study of depression and Deaf adolescents by Rostami, Bahmani, Bakhtyari and Movallali reported mild levels of depressive symptoms being more prevalent among Deaf students.76 It has further been argued that communication difficulties among the Deaf increase symptoms of depression and this is related to developmental delays associated with early communication deprivation.77 Communication barriers and low ability to express demands and needs can lead to giving up interest in activities, which places one at risk of mental health problems such as depression.78 Further research shows that children from families with poor communication are likely to show withdrawal behaviours and aggressive or impulsive actions.79 On the contrary, a study on social interactions between Deaf and hearing people revealed that Deaf people were less aggressive than hearing people and the study results did not support the hypothesis that hearing people’s responses would reflect negative attitudes and beliefs about Deaf people.80 Holding negative beliefs that Deaf people are short tempered or highly temperamental is too generalising and as such can lead to negative stereotyping. Negative stereotyping has a detrimental impact on positive self-image.81
Optimal child development may not be fully achieved in the absence of effective interaction and communication within and outside the family.82 Children, whether they have disabilities or not need a sense of belonging, love and care which language and effective communication offers. Where a barrier exists in communication, the child’s expectations may not be met and that creates incongruence with emotional development expectations. The inability to use SL by parents does not only hinder emotional and social development, but may also affect academic performance as certain scholars such as Babudoh and the Ministry of General Education in Zambia have alluded to.83 Research by Babudoh has shown that dropout rate among Deaf children is mainly related to parents’ lack of SL skills.84 Parents are supposed to be active participants in helping children with school work. However, with language limitations, they are at a disadvantage in helping their children in homework and reading programmes, among other academic tasks that require parental help or guidance.
The results of this study further question the realisation of inclusive education in Zambia. The child’s rights to belong to the family become so limited that the child may feel he or she is not loved and cared for within the family. In the debate to embrace the concept of inclusive education, full inclusion is only possible when all support systems for child development and education are put in place. As it is now, Deaf children don’t seem to benefit much from the practice of inclusive education because they are excluded right from their homes. Overly, if inclusive education is to be realised, families should be involved in programmes that help them to be part of their children’s education. Article 7(3) of the CRPD emphasises that parties that are signatories to the Convention should ensure that children with disabilities are accorded their right to freely express themselves in the best interests of the child and ensure equality with other children to be able to express themselves on matters affecting them.85 However, as it is, the results of this study show that children who are Deaf find it difficult to exercise their right. Further, their families are also incapacitated in the ability to communicate with their own children. It’s not the child’s fault that they cannot hear and speak and therefore efforts need to be made to ensure that children are able to communicate their needs and interact with their families, peers and teachers if the right to inclusive education is to be realised.
One of the ways to ensure that the right of children who are Deaf to belong to their family is realised is to empower parents with communication abilities in SL. This study reveals that parents’ zeal to effectively communicate with Deaf children was hindered by lack of SL skills. The lack of communication abilities can be a barrier to the realisation of inclusive education and an inclusive society in general. We cannot boast about practicing inclusive education in the absence of empowering parents who are key stakeholders in the education and development of their children. Inclusive education in any case should start from the family, the place where the child develops before he or she goes into the wider community and eventually school. While article 24 of the CRPD guides parties to provide access to inclusive and lifelong learning from primary to tertiary level, it further emphasises that parties should facilitate modes of communication, provide reasonable accommodation and training of professionals to teach persons with disabilities effectively.86 The inclusive agenda for persons with disabilities and especially persons with hearing impairment cannot be easily realised when some key stakeholders such as parents are not empowered to participate in the education of their children.
This study interrogated the participation of parents and guardians in the education and general development of their children who are Deaf. The results showed that parents and guardians did not participate fully in the education and general development of their Deaf children because of limitations in SL. Parents faced challenges in communicating with their Deaf children because they did not know SL. No significant differences were observed between male and female parents and guardians in relation to knowing SL, thereby disapproving the hypothesis that female parents and guardians communicated with Deaf children in SL better than their male counterparts. Further, the results showed that the closer the relationship with the deaf child, the higher the willingness to learn SL, showing that parents and closer siblings were more willing to learn SL than guardians. However, the willingness was inhibited by lack of support from experts to teach them SL so that they communicate well with their children.
There is no doubt that a lack of communication can affect early childhood development and perhaps the rest of a child’s life. This study therefore illuminates the need to empower parents of deaf children with SL skills to enable them to participate actively and effectively in the education and development of their children. Although, there is a dearth of studies on the relationship between parents’ knowledge of SL and academic performance as well as general development, literature appears to point to this fact. This study however, opens gaps for further research in the area of parenting children who are Deaf in Zambia. Participation in the education of their children can best be facilitated when parents are supported to learn SL. In Zambia, just like it may be in other third world countries, SL seems to have been neglected.87
The situation may not have changed much to date since current literature shows that teachers in schools still face challenges in teaching learners with hearing impairment due to limitations in SL.88 Although attempts have been made to develop Zambian SL,89 teachers in schools still struggle with limited SL vocabulary.90 If such challenges exist among teachers that are expected to teach learners who are Deaf, the situation is most likely to be worse with parents because they are not exposed to SL. Parental participation in the education of their children can be inhibited by a language barrier. Based on the results of this study, the Ministry of General Education in Zambia through schools should develop a deliberate policy to provide SL lessons to parents of Deaf children. This is possible through home visit SL lessons at agreed times or by organising evening classes. This kind of initiative means using the already available specialised human resources in schools (specialised teachers). Another strategy would be to identify parents with Deaf children and invite them to attend SL classes at schools. SL videos or CDs should be developed and distributed to parents to be able to learn SL on home television. The use of videos and social platforms to learn SL can also be used in the Zambian context if parents are given support to meet internet costs. Non-Governmental Organisations, the church and other disability interested groups can help to train families of Deaf children in SL. By providing support to parents through SL lessons, the realisation of the inclusion would be achieved. Further, the attainment of the Sustainable Development Goal (SDG) number 4 on inclusiveness and lifelong learning by 2030 may be realised as Deaf children will get more involved in education.
5. United Nations ‘Department of Economic and Social Affairs Disability’ https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/the-10th-anniversary-of-the-adoption-of-convention-on-the-rights-of-persons-with-disabilities-crpd-crpd-10.html (accessed 21 June 2020).
9. Ministry of National Development Planning Zambia: Sustainable development goals - Voluntary national review 2020 https://sustainabledevelopment.un.org/content/documents/26305VNR_2020_Zambia_Report.pdf (accessed 9 December 2020).
28. HA Johnson ‘What have we learned from research in deaf ed?’ Michigan: Hands and Voices (2014). http://www.handsandvoices.org/articles/research/v12-4_research.htm (accessed 10 July 2018).
41. DL Sorkin 'Cochlear implantation in the world's largest medical device market: Utilization and awareness of cochlear implants in the United States' (2013) 14 Cochlear Implants International https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3663290/#s5title (accessed 23 June 2020).
47. PD Giulio, D Philipov &I Jaschinski ‘Families with disabled children in different European Countries’ Families and Societies, Changing families and sustainable societies: Policy contexts and diversity over the life course and across generations (2014) 1.
48. EC Davies ‘Parenting attitudes and stress levels among parents of children who are deaf’ Rehabilitation, human resources and communication disorders Undergraduate Honors Theses, University of Arkansas, Fayetteville, 2015http://scholarworks. uark.edu/rhrcuht/40 Rehabilitation, Human Resources and Communication Disorders Undergraduate Honors (accessed 10 July 2018).
59. B Goss ‘Hearing from the Deaf culture’ (2003) XII-2 Intercultural Communication Studies 1 https://web.uri.edu/iaics/files/03-Blaine-Goss.pdf (accessed 10 July 2018 ).
82. UNICEF Communicating with children: Principles and practices to nature, inspire, excite, educate and heal (2011) https://www.unicef.org/cwc/files/CwC_Final_Nov-2011(1).pdf (accessed 24 October 2020).
85. United Nations Convention on the Rights of Persons with Disabilities (2006) https://www.un.org/disabilities/documents/convention/convention_accessible_pdf.pdf (accessed 24 October 2020).
87. VM Chanda ‘Lexicography and Sign Language engineering: The Zambian experience’ (1997) 7 Lexikos 192 http://lexikos.journals.ac.za (accessed 10 December 2020).
88. M Mulonda ‘A situational analysis on the use of Sign Language in the education of the deaf in Zambia: A case of Magwero and St Joseph schools for the deaf’ Unpublished Master’s thesis, University of Zambia, 2013.
- Tafadzwa Rugoho
- PhD Candidate, Vrije Universiteit Amsterdam
- MSc (NUST), MSc (CUT), BSc (UZ)
- Pamela Wright
- Director, Guelph International Health Consulting, Amsterdam the Netherlands
- Michael Ashley Stein
- Executive Director, Harvard Law School Project on Disability; Visiting Professor, Harvard Law School; Extraordinary Professor, Centre for Human Rights, University of Pretoria
- Jacqueline E.W. Broerse
- Professor of Innovation and Communication in the Health and Life Sciences; Director of the Athena Institute of the Faculty of Science, Vrije Universiteit Amsterdam
- T Rugoho, P Wright, MA Stein & JEW Broerse ‘Sexual and reproductive experiences of youth with disabilities in Zimbabwe’ (2020) 8 African Disability Rights Yearbook 31-51
- Download article in PDF
Over 120 million youth with disabilities around the world face challenges related to sexual and reproductive health (SRH) services, such as unwanted pregnancy, sexually transmitted infections, and forced abortions and sterilisations. The main causes are cultural, legal, political, and social practices that restrict their rights. Our study explored sexual expectations and experiences of youth with disabilities. We conducted a qualitative study of 20 youth with disabilities using focus group discussions and semi-structured interviews, and then applied a thematic analysis of the data. The findings reveal that youth with disabilities are discriminated against with regard to accessing SRH information. This early exclusion results in discriminatory treatment at other stages of their lives, such as the onset of sexual relationships and marriage. They may also indulge in risky sexual behaviours which expose them to sexually transmitted diseases. Conversely, engaging in relationships, marriage and parenthood brings positive results, especially to women with disabilities. Marrying a non-disabled partner is viewed by disabled men as countering social discrimination. Some of the experiences suggest that parenthood has potential for bringing new status and social capital to persons with disabilities. Our primary recommendations based on this research are that youth-focused SRH schemes need to be redesigned to serve the public health needs of youth with disabilities, a vulnerable population that remains excluded from programming; and girls and women with disabilities should be especially targeted within these redesigned SRH programmes.
More than 120 million youth worldwide live with disabilities.1 The World Health Organisation defines disability as an umbrella term for impairments, activity limitations and participation restrictions. Much like other youth, youth with disabilities face numerous challenges relating to their sexual and reproductive health (SRH). These include sexual health issues, unwanted pregnancy, sexually transmitted infections, and forced abortions and sterilisations. The SRH of youth with disabilities, however, continues to be overlooked and ignored,2 mainly because disability is viewed from a medical model that equates disability with illness3 and assumes that persons with disabilities do not have sexual desires4 or are hypersexual, and are incapable of participating in sexual acts.5 Such stereotypes regarding persons with disabilities create barriers for their equal access to the SRH services to which they are entitled by national constitutions, international laws, and, prominently, the Convention on the Rights of Persons with Disabilities (CRPD).6 Women with disabilities are more deeply affected by these negative attitudes, even in comparison to their male counterparts.7
Persons with disabilities face these challenges because discrimination against them starts at an early age, originating from their parents and schools. The important role of parents in sex education for their children has been demonstrated by many studies.8 However, research has also shown that parents of children with disabilities are particularly uncomfortable teaching them about sexual and reproductive issues because of their anxiety, fear and lack of preparation.9 Schools can likewise play a role in teaching SRH issues to learners with disabilities. Indeed, comprehensive sex education has been recommended for all schools in South Africa, the United States and many others countries.10 But many teachers are especially uncomfortable discussing sexual issues with their disabled students.11 Even when teachers are willing to make an effort to include learners with disabilities, those youth are often excluded from public schools in low-income countries.12 In Zimbabwe, for example, it is estimated that approximately 600 000 students with disabilities of school-going age are not attending school.13 These youth will be illiterate, miss any provided SRH education, and likely be unable to read the written SRH information that is distributed in their communities.14 In an effort to promote SRH for persons with disabilities, a human rights approach has been adopted internationally.
Access to quality and affordable SRH services for persons with disabilities has featured prominently as a human rights issue since the beginning of the 21st century. The CRPD’s adoption was a reaction to the exclusion of the rights of persons with disabilities within the broader human rights agenda.15 Referencing similar provisions in the Universal Declaration of Human Rights and other core human rights treaties,16 the CRPD explicitly and broadly recognises the equal SRH of persons with disabilities.17 It does so by challenging cultural, social, political and religious practices that may harm the rights of disabled persons, including those impacting marriage, family, parenthood and relationships.18 The right of persons with disabilities to the autonomy of their bodies is similarly recognised, including attendant rights to be married and have children.19
People with disabilities should be free to make such decisions.20 Accordingly, the CRPD mandates governments to promote access to good quality and affordable SRH services to persons with disabilities.21 The CRPD also places emphasis on addressing discrimination, inequalities, ensuring participation of persons with disabilities in health planning and decision-making and ensuring accountability. One desired impact of the CRPD is to enable persons with disabilities to claim their rights to information, education and quality of services for SRH.22 Persons with disabilities should be seen as having agency. This has been recognised by United Nations (UN) bodies and many international organisations by mainstreaming SRH for persons with disabilities in their programming. The human rights approach advocates for a substantial shift in how health programming happens, by changing the focus from simply meeting needs to doing so in ways that fulfil human rights.23
A number of African countries have ratified the CRPD,24 including Zimbabwe, which did so in 2013.25 As might be expected, given the millennia of entrenched stigma that preceded the CRPD, as well as the varying levels of state commitment to its enforcement, progress in implementation differs by location and sector.26 In Zimbabwe, SRH is one area that appears not to be meeting persons with disabilities’ expectations. Moreover, there is still a knowledge gap on the extent to which youth with disabilities can achieve their SRH.27
Accordingly, the aim of this study was to explore the sexual expectations and experiences of youth with disabilities in relation to their SRH. Data was collected using a narrative approach which allowed youth with disabilities to recount their own stories. Their responses can inform science and practice. Throughout, this paper employs a rights-based approach in interrogating the barriers faced by youth with disabilities in accessing their SRH.
The study was conducted in Chitungwiza, a town located approximately 25 kilometres southeast of Harare, the capital city of Zimbabwe. This town is a densely populated community close to the capital city, but representative of average living conditions in the country. According to the 2012 census, the population of Chitungwiza was around 300 000.28 Due to the collapse of the Zimbabwean economy, many industries in the town have closed, leaving its inhabitants to rely mainly on the informal sector for income.
Data was collected using qualitative methods suitable for generating semi-structured, contextual knowledge on a particular subject.29 We carried out semi-structured interviews with 20 youths with disabilities. Using purposive sampling with the help of a non-governmental organisation that runs outreach programmes for youth with disabilities, 23 people were invited to participate in the research. Of the 20 who agreed, 11 were men and 9 women; their ages ranged from 18 to 33 years. Three (two women and one man) declined to participate; no reasons were sought for their refusal. Although the African Youth Charter defines youth as persons between 15 and 35 years old,30 we selected only those 18 years and older to ensure they were legally regarded as people who could give consent to be interviewed. Three of the participants were visually impaired, two women had a hearing impairment and 15 participants had various physical disabilities. Of the 15 participants with physical disabilities, two used wheelchairs for mobility. Interviewees were asked to narrate their experiences during their upbringing and personal development, especially with regard to their sexuality. Each interview lasted between 45 and 60 minutes. The topics covered in the interviews included: the experience of sexual maturation while living at home and/or attending school; access to information about SRH; finding a sexual partner and developing sexual relationships; getting married; and becoming a parent. All the questions were asked in a very open manner and the respondents described what was relevant and important to them at different times in their lives.
To increase validity, a second stage of data collection consisted of two focus group discussions with the same youth with disabilities. For these discussions, we separated men and women into two groups, with the 11 men in one group and the nine women in the other. Each discussion lasted between 70 and 90 minutes. Data collection was carried out by the researchers with the help of a female volunteer research assistant who is well versed in the sign languages used in Zimbabwe. The female assistant researcher, who is 29 years old, collected the data from all female participants during the focus group discussion and interviews. The first author (male) collected data from men. All participants preferred to use Shona, one of the main languages spoken in Zimbabwe; the first researcher is fluent in Shona. In both sessions, participants agreed for the conversations to be recorded using a dictaphone. This was also done to collect the data accurately. Notes were taken to record important points. The same issues were discussed as in the interviews, but now with the interaction and exchange of views in the groups.
The first author and the research assistant worked together in translating the raw data into English. A colleague who is a professional translator was asked to prepare another translation. The two translations were compared by the first author, research assistant and a professional translator. This improved clarity on the translated data. The next step was familiarisation with data. The first author and research assistant read the data several times. An open coding approach was used to code the data. Data was first put in categories and then emerging themes were listed. The first author and research assistant discussed areas of clarity during the thematic data analysis. The data was further cross-referenced to draw out common and contrasting features and other areas of interest.
Great Zimbabwe University provided the ethical approval. The current research adhered to standard ethical research practice31 which included obtaining written and verbal informed consent during the planning phase. All participants were told that participation was voluntary (no benefits such as money were to be paid) and that they had the right to exit the research at any point without giving a reason. All the participants agreed with the conditions of the research, and no one opted out. Three participants sought to know how their identities were to be protected. It was explained that anonymity and confidentiality were ensured by giving participants pseudonyms and keeping the data in a secure location.
The findings revealed challenges at the different stages of life. The four stages of life identified are: (1) childhood, within the family and at school; (2) becoming sexually active; (3) getting married; and (4) becoming a parent. However, some persons do not necessarily follow the mentioned stages. Results further revealed that discrimination cuts across all stages of life. At the different life stages youth with disabilities used a range of strategies to resist discrimination by choosing to engage in certain behaviours, such as becoming sexually active, getting married and having children. The results are elaborated below.
Childhood is the stage at which much of the socialisation is done by the family, community and schools. Family, society and schools play a critical role in giving information on SRH. Findings from both focus group discussions and semi-structured interviews with youth with disabilities indicated that they received little information on SRH from home, local society or schools. Participants indicated that the treatment they received from their parents was quite different in comparison to their siblings without disabilities. They highlighted that their non-disabled siblings would get all the necessary information on sexuality and reproductive health from parents, uncles and aunties. A participant with physical disabilities, Chipo, 29 years old, stated:
When my young sister started developing pubic hair and having menstrual cycles she received a lot of information from my mother and aunties ... they started discussing issues of pregnancy and relationships with her. For me, my mother only emphasised issues of hygiene. They treated me as someone without a sexual life. It is hard to seek information from people who discriminate [against] you.
During her semi-structured interview, Edith, 29 years old, who has physical disabilities and is the mother of two children, narrated similar experiences. Persons with disabilities are not seen as sexual persons. She stated:
The only thing I remember my mother teaching me is how to prepare for my menstrual periods. She would evade other questions I would ask her about sexual issues. She warned me that she did not want to hear me talking about sexual issues again. I don’t think she thought I would develop sexual desires. Yet she was open to my younger sister.
Participants reported that there was censorship on sexual information for them. While this exists for all children, they noted that when other siblings reach adolescence, they started getting information. By contrast, parents restricted access to information on sexuality for the disabled children - books and magazines were censored before they were allowed to be accessed by youth with disabilities. This experience was shared by a number of participants. During the focus group discussion, Pride, 20 years old with physical disabilities, put it this way:
My parents were against me reading magazines and books on relationships, body parts and sex. They would tell me that this is evil information which would spoil my head, yet other siblings were allowed to read them. Maybe they thought the fact that I am disabled and in a wheel chair meant that I did not have the potential to engage in sexual activities.
The respondents also reported that children with disabilities are discriminated against by their parents who have difficulty accepting their disabilities, thereby making it difficult for them to interact and share information. There is some element of resentment towards children with disabilities by their parents. Edith’s parents were always arguing about her disability and accused each other of causing her disability. Neither parent showed affection towards her. Thus, she grew up as a loner, treated as an outcast by both parents. In such an environment it is difficult for children to be open with their parents and ask questions, especially regarding sexual issues.
My father hated me. He never allowed me to call him Daddy. He did not acknowledge me as his daughter. In such circumstances, it is difficult to be educated on issues of sexuality and reproductive health. The fact that I was rejected by my parents also made me withdraw from the family and community.
Participants further noted that gender could play a role and the treatment experienced by a girl and a boy with disabilities could differ. Thus, some male participants reported that their parents were not that strict on the information that they might access. Calvin, a 24-year old man, and his twin sister were both born with physical disabilities. According to Calvin, their parents monitored his sister more than they did him. He was allowed to read any book even those on SRH. During a semi-structured interview Calvin said:
My sister was closely monitored. My parents feared that she would become sexually active and become pregnant. Our mother never allowed her to talk about boys. Or read about sexual relationships. But for me, I was treated as a normal boy. They expected me to have girlfriends, marry and have children one day.
Participants agreed that while both boys and girls experienced discrimination in accessing SRH information in comparison to their non-disabled peers, the situation was worse for female adolescents with disabilities. Female participants pointed out that their male counterparts still enjoyed patriarchal benefits. However, other male participants claimed that they also continued to be seen as children because of their disability. Taku, a 24 year old man with cerebral palsy, had this to say during the focus group discussion:
I was treated as an asexual person. Women in my family continued to undress in front of me even when I had become a teenager. No one explained to me about the changes which were happening in my body when I became a teenager. No one even talked to me about sexual issues.
Society also makes it difficult for youth with disabilities to access information on SRH services. Participants recalled an outreach programme in which organisations moved around the country teaching people about HIV and AIDS. When they demonstrated condom use, youth with disabilities were forced to leave. Shingi, a 19 year old with both legs amputated, said during his interview:
I vividly remember when the nurses were teaching the community about safe sex methods. One of the elders from the church who was well respected by the community stood up. He argued that it was wrong and sinful to do condom demonstration in my presence. I was asked to leave and my friends remained. The elder said that I was being tortured since I cannot become sexually active. Yet I had made the decision to attend the demonstration on my own.
Each group indicated that, as a result of this discrimination, they suffered from lack of confidence and low self-esteem when it comes to sexual issues, in large measure because they did not have enough information and had been made to feel it should not concern them by all around them, their family, the schools and the society of the local communities.
After childhood, some persons with disabilities wanted to be sexually active. As they looked for sexual partners, their lack of sexual education presented challenges for youth with disabilities. Participants felt that they were not well prepared and lacked capacity to negotiate for sex. Men described that their first experience was filled with uncertainty and anxiety. Paul aged 21, who had both a leg and a hand amputated, asserted during the semi-structured interview:
I was sure that I wanted to do it. But I did not have enough information ... Because I failed the first time, I was embarrassed to try it for the second time. The experience traumatised me because I thought I would not be able to gain an erection again.
I started being sexually active at the age of 30. I wanted to have sex as early as 20. Most of my friends started to have sex in their twenties. They would tell me about their sexual escapades. So I would masturbate when I got the opportunity. As a physically disabled person it was difficult to engage in sexual relationships.
Youth reported engaging in sexual activities that exposed them to health risks because they did not have sex education and lacked information on SRH. Jethro, 20 year old, with polio of the left leg, stated that when he wanted to start having sex he chose a commercial sex worker. The commercial sex worker was open and accommodating to him. However, neither demanded to use a condom, thereby risking infection with a sexually transmitted disease.
For women the experience is not the same. For them, the anxiety was often related to a perceived risk of abuse. They told us they felt that they did not have the power to initiate sexual intercourse in their relationships; they lacked agency in this part of their lives. It was the men who took charge of everything. Rachel felt that she was blackmailed into having sexual intercourse by her first boyfriend who did not have a disability. The boyfriend told her that the only way to show that she loved him was for her to have sex with him. During the semi-structured interview Rachel, aged 21 years, who has a short left arm stated:
I was madly in love with him. I thought he had genuine love for me, yet he wanted to use me. I thought I was fortunate to be loved by someone without a disability. I did not want to sleep with him but he threatened to leave me if I did not. I had to agree to save the relationship. He dumped me a few weeks after sleeping with me.
Again for women in contrast to men, there was anxiety about sharing information on their sexual experiences. Female participants pointed out that when one has not received adequate sexual education, it is also difficult to share sexual experiences, which would otherwise help to maintain wellbeing. The difficulties for persons with disabilities are illustrated by the following stories of Chipo and Samantha. During her interview, Chipo recounted how discrimination and fear of discrimination stopped her sharing:
With the stories of HIV, you would love to share with those close to you so that they can help. My boyfriend and I had intercourse without a condom. I was stressed that I was going to be infected, but there was no one to talk to about that. I remember that one of my childhood friends who is physically disabled shared her story with someone who betrayed her and told the story to others. Her story became known by the entire community. She was labelled and called names. So for me, I was afraid of being shamed.
I got my first unwanted pregnancy as a result of the absence of relevant information. When my boyfriend slept with me, we did not use any protection. Of course I was afraid of getting pregnant, but I was afraid to tell my aunt. I could not go to the clinic or pharmacy. I was afraid they would share my story with my aunt. So I kept quiet. My aunt only realised that I was six months pregnant when I felt ill.
Shami, 26 years old, who is hearing impaired, added a comment further illustrating the lonely situation of a disabled person with little knowledge and fear of sharing her experience, during a semi-structured interview:
I developed some pimples around my private area after the first sexual intercourse. The man who had slept with me did not use a condom. I was afraid to share with my mother or sisters. I had to buy the medications in the streets.
Monitoring of sexual activity among younger persons with disabilities was stricter than for other youth. The onset of sexual activity can lead to greater surveillance especially of women. Parents generally did not want their teenage children with disabilities to participate in any sexual relationships. Female participants reported that they were forced to abandon their relationships with their boyfriends due to family interference; they did not want her to have agency in this area of life. As narrated by Edith:
I first had a boyfriend when I was 16 years old. After three months of the relationship my mother found out, after my younger sister told her. My mother was extremely angry. She even told my father and the pastor about my relationship. I was forced to quit the relationship.
In another example of the different treatment of a disabled daughter, Judith said that when her parents discovered that she was sexually active she was interrogated about the men she was sleeping with. Her parents wanted to create a false rape case against her boyfriend. When she refused, confirming that the relationship was consensual, she was forced to go to the rural areas for two years because they thought she would be at less risk of being in a relationship there. Judith, 34 years old with physical disability, reported:
Women would lose their privacy due to constant policing by family; they also lost the right to consent over their bodies. Women respondents who were sexually active described how their parents forced them to go to the doctor to get medication to prevent pregnancy. They suspected that the medication that was administered to them had long-term effects on their reproduction. Gena, 28 years old, who was diagnosed with a mild form of Down syndrome and cerebral palsy, said:
Communities also make it hard for girls with disabilities to become sexually active. Locadia narrated that she entered into a sexual relationship when she was 21 years old, whilst studying a course in garment making at a vocational college. One of her instructors expressed concern about the relationship. From Locadia’s account it was very clear that her instructor treated her as someone who lacked agency, who did not have the right to decide to have a sexual relationship. According to Locadia, a 34 year old woman with spina bifida, the instructor stated:
Why do you need a boyfriend? Are you sure you [were] not forced into that relationship? Do you think they have genuine love for you? Do you think they will marry someone disabled if they impregnate you?
For men the experience was quite different. For them, sharing the information was a positive experience. Engaging in sexual activity is seen as a victory both by them and by their community. Kenneth, a 27 year old with physical disabilities, found acceptance once he told his friends that he was no longer a virgin. He stated:
The experience gave me the masculinity I was lacking. My friends had often portrayed me as a half-man because I had not had sex. They called it the art of taming the opposite sex. So I was excited to let my friends know that I had slept with my girlfriend.
After dating, some persons with disabilities move to marriage. Marriage offers different opportunities. Costs and benefits were compared with regard to selection of a partner. For men it is an opportunity to contest stigma and discrimination. Joe, 27 years old with a physical disability, explained during focus group discussions how he expressed his agency in partner choice:
Dating and marrying able-bodied women reaffirms my manhood and masculinity. For me, a real man should date able-bodied women, even when he is disabled. I had long decided that I was not going to marry a disabled wife like myself.
For Kenneth it took years to reaffirm his masculinity. At first, he would get stressed when his love advances were turned down by able-bodied women. This caused insecurity and anxiety. Kenneth is now married to a teacher who is not disabled and he feels very comfortable with his wife. He stated during a focus group discussion:
Jonathan, 26 years old, with a physical disability, believes that he married a very beautiful woman and that this status gives him a lot of affirmation. He claimed that because of the beauty of his wife, he had been able to get respect from community members. He believes that the fact that he managed to convince a very beautiful woman to marry him affirms that he is a competent man. He said during a group discussion:
My wife is the most beautiful woman in our suburb. Being married to her gives me a complete sense of self. I do not see myself as a disabled man in a wheelchair but a man like others. She gave me the affirmation I craved.
However, the question of who to marry was met with mixed reactions among the male participants. Others felt that it is prudent to be in a relationship with a fellow disabled woman. They made their decision based on their previous experiences in which non-disabled women abused and cheated on them. Baron said:
They cheat on us these able-bodied women, it is better for me to be married to a disabled woman who equally respects you. I was once cheated by an able-bodied girlfriend. But disabled girlfriends have not cheated me. So I decided to marry a fellow disabled woman.
Baron’s sentiments were common also amongst women. Most of the women said they preferred to be married to fellow disabled men. In their opinion, non-disabled men will succumb to negative pressure from their families and community and dump them. These sentiments were shared during a focus group discussion by 26 year old, visually impaired Jessica, who explained:
Women with disabilities will suffer emotionally if they are married to non-disabled men. Divorce rates are higher among marriages between disabled and able-bodied than in marriages in which both partners are disabled. I have seen it.
Internalised stigma also makes it hard for some people with disabilities to get married to non-disabled partners. Women reported that because of the entrenched discrimination towards them, they feel inferior. The inferiority complex amongst women with disabilities has resulted in their finding it hard to accept marriage proposals from non-disabled men. Disabled women have a deep-rooted mistrust and suspicion of able-bodied lovers. Olinda, 21 years old, who lost an eye and a hand in an accident, said during her interview:
In a town full of beautiful and nondisabled women like ours, I would take any proposal from men without disabilities with suspicion. When men without disabilities propose to us, the majority of them would want to make fun of us. They do not have any genuine love towards ladies with disabilities. I don’t trust able-bodied men.
The participants recognised that they were also victims of internalised stigma, which was common amongst both men and women. They attributed such self-discrimination to their low self-esteem. Shandell, 18 years old, with a physical disability, said during her interview:
Sometimes we are to blame. We create barriers for ourselves. We do not go out there to experiment. We feel self-pity. I have seen most of my friends who think that society hates them, yet it’s only their perception.
Arranged relationships and marriages also helped to show that they suffered from internalised stigma. An arranged relationship is when a family or a friend facilitates the person finding a girlfriend or boyfriend; it can result in a marriage. These arrangements may be made by friends or relatives. During a semi-structured interview, Jasper, 22 years old, who has a short hand and a deformed left leg, said:
I had low self-esteem because of my disability and suffered from self-discrimination. My aunt arranged a girl for me. At first, I was tense about the idea but my friends helped me to warm to it. Within a few months, I was happy in the relationship. I am now married to an able-bodied beautiful lady. Looking back, I acknowledge that I was a victim of self-discrimination at that stage in my life.
I never thought someone able bodied would love me. I had totally given up on having a sexual life. But after I realised that I was self-discriminating, I started experimenting. My friend pressed me to accept love proposals from one of my colleagues in street vending. After I gave him a chance, he made me happy. He accepted my disability. Even his parents accepted me when he introduced me to them. We are happily married now. I regret all those years of self-discrimination.
Some persons with disabilities will decide to have children either within or outside of marriage. In Zimbabwe, parenthood is an important stage in the lives of youth with disabilities. Parenthood challenges stereotypes, stigma and discrimination. It enables persons with disabilities to claim the identities of motherhood and fatherhood. They see their children providing them with security in life. Women were proud when those around them began to relate to them as mothers, not as women with disabilities. Shami, 24 years old stated:
I proved the community wrong, they were discriminating me. They regarded me as useless. I have managed to procreate, which is being failed by other able-bodied women. I am now called a mother. I made the decision that I was going to have four or five children to show them that there was nothing wrong with me.
Anna, who earlier reported that her parents had resented her for her disability, also reported that after she had three children, the parents changed their attitude towards her. They now treated her as a parent, with the capacity to make decisions.
You gain more status in the community if you have children. I remember that I used to move around with my first son. Just to prove to the community that I was not useless or infertile. I managed to show that my sperm are not disabled also.
My daughter invited me to her school. I interacted with her teachers and other parents. I told them that I sell chickens and peanut butter. I have received several orders. I am now friends with some teachers and parents.
My son plays soccer for a local junior team. When they are playing with other teams in the district, he invites me to watch him play. He does not care that I am in a wheelchair. I now go out supporting his team frequently. I now have lots of friends. Some offer me transport when my son’s team is playing very far; I travel with them in their cars. I am now connected to a number of people. I am now into buying and selling sporting regalia. People support me a lot.
SRH are now recognised as an integral part of human rights. In recent years, there have been global calls to make SRH information and services accessible to people with disabilities. Using a qualitative methodology, the study explored the sexual expectations and experiences of youth with disabilities. The results showed firstly that from childhood to parenthood, persons with disabilities encounter discrimination. Family, schools and community, which are supposed to be sources of information at the early stages of their lives, continue to discriminate and marginalise them. Similar findings were reported across Africa, for example in South Africa32 where it was also found that parents were not comfortable discussing sexual issues with their children with disabilities. However, this reluctance may also reflect cultural practice and beliefs unrelated to disability. In a study in Kenya on children without disabilities, parents were still not comfortable discussing sexual issues with their children;33 notably, youth with disabilities may face more general discrimination than other groups.34 This is contrary to article 23 of the CRPD which requires states to implement measures to eliminate discrimination against persons with disabilities in all sexual issues such as marriage, family, parenthood and relationships, on an equal basis with others. The study noted, however, that in a family with both boys and girls with disabilities, the boys received better social acceptance when seeking SRH information. Even their participation in sexual relationships was better tolerated. Male youth seem to benefit from the patriarchal system even if they have a disability. The intersection of gender and disability accumulates to further disadvantage the female youth with a disability. Inequities and unfair practices have the potential to affect their self-esteem and well-being in other life stages such as marriage.
An intersection of low education and discrimination affects young women’s decisions about seeking medical attention when they perceive an SRH issue. Absence of SRH information could lead to risky sexual behaviour that exposes them to sexually transmitted diseases. Our results also show that many communities are not comfortable with SRH education being offered to youth with disabilities, but they may feel the same about sex education to youth in general; they may believe that teaching youth about sexual issues equates to giving them permission to engage in sex.35 However, when SRH was being discussed at school, youth with disabilities were asked to leave the class. In most societies, elders are not comfortable discussing SRH issues with youths, especially those who have not reached the age to marry.36 The absence of accountability mechanisms in the country makes it hard for youth with disabilities to achieve their SRH rights.
As they mature, youth with disabilities may also enter into sexual relationships just like their peers without disabilities. The onset of sexual activity may bring many experiences to youth regardless of whether they are disabled or not.37 Engaging in sexual activity means different things for men and for women with disabilities. For the men, being sexually active may be part of becoming a man. It shows that they have been able to conquer the negative sentiments that are directed towards them by the community. Male youth with disabilities indulge in sexual activities so that they may fulfil the expectations for a man within the community. Women with disabilities, however, may fear that if they do not agree to sexual activity they will be abandoned by a partner, especially an able-bodied one. Sexual activity may express their desire to please and to demonstrate their love. However, women face more challenges if family and community realise that they have become sexually active. Society will give them negative labels. They may lose control of their autonomy and privacy, as they are monitored constantly on their sexual behaviour. Families are reluctant to let them become sexually active; in extreme cases their fertility is controlled without their input.
At a later stage, persons with disabilities may wish to get married; just as for marriages of non-disabled persons, there is excitement. Results show that it may be used as an opportunity to invalidate myths and stereotypes that are attached to persons with disabilities especially women. Women with disabilities are traditionally seen as incapable of handling the role of a wife.38 Both men and women with disabilities can use marriage to prove to their community that they are able to engage in sexual relationships.39 The choice of a marriage partner is perhaps more critical to persons with disabilities than to other young people. Both men and women gauge the costs and the benefits of different types of partners. The results support the arguments that persons with disabilities have agency and can make sound decisions on getting into a marriage.40 Women reported their fear of marrying a non-disabled person, because of perceived risk of abuse, as reported previously.41 Participants in the current research referred to their past experiences and perceptions to determine who to date and marry. For men, marrying a non-disabled person demonstrates their masculinity. It can be helpful in fighting discrimination and facilitating integration. The choice of a partner can be a result of past discriminations suffered or due to self-discrimination.
Relationships may result in becoming a parent. Parenthood has been seen as a negative experience for persons with disabilities,42 but these studies followed the medical model which focuses on the difficulties faced by persons with disabilities as parents.43 Previously, persons with disabilities were also seen as a homogeneous group of people who needed assistance to survive. Persons with disabilities with children were also seen as an economic burden.44 However, the women with disabilities in the present study were proud to achieve the identity of mother in their communities, which brought them new respect. Motherhood was important to women with disabilities because it reflects women’s female identity.45 For the young men, fatherhood can be an opportunity to demonstrate their masculinity, as reported earlier.46 It boosts the self-esteem of persons with disabilities as it improves their integration into the community though the social networks established through their children. Children help in establishing networks which becomes a source of social capital for their parents as described before.47 The current study also showed that children could offer emotional and social support to their parents when they perceive discrimination.
Discrimination against people with disabilities has remained the biggest challenge in all spheres of life.48 The study results show that youth with disabilities experienced discrimination at every stage in their life cycle. This discrimination may affect their wellbeing, as has been reported. Women with disabilities were likely to be more affected by discrimination. This could be attributed to the intersectionality of disability, gender, economic status and other factors which promote inequalities against women with disabilities. Women often have a subservient role in many countries, including Zimbabwe, but having a disability exacerbates that situation; women with disabilities are victims of multi-discrimination. It is because of this reason that the UN Committee on the Rights of Persons with Disabilities has emphasised that governments should promote the SRH rights of women with disabilities. Results show that years of suffering discrimination can result in self-stigma, which was also reported by the participants in this research, for example as a limiting factor in finding a partner to date or to marry. However, the results also showed many examples of the persons with disabilities expressing agency in finding information, finding sexual partners, getting married and having a family. Many of them were able to overcome the discrimination and self-stigma to participate in the social life of their community.
The current study was conducted in Chitungwiza which is a dormitory town outside the capital city of Harare. The authors expected better understanding of disability issues because of social amenities such as schools which are found in the area. There are also a number of disabled peoples’ organisations and non-governmental organisations working in the areas on disability, so one might have expected better treatment of persons with disabilities as well. Youth with disabilities in other countries in Southern Africa with similar cultures and levels of development may be facing the same types of barriers, and strategies to reduce those barriers may be applicable not only within, but also outside of Zimbabwe.
From a rights-based approach, it is clear that communities have not yet created a friendly environment for youth with disabilities to achieve their SRH. Zimbabwe was the first country in Africa to have a disability-related law, however, people with disabilities have not yet enjoyed the rights enshrined in that law. This can also be said with the education where a number of people with disabilities are out of schools. Lacking support, youth with disabilities are becoming sexually active without accurate information and knowledge to protect them from health risks. It is recommended that full operationalisation of the CRPD and the Protocol to The African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities in Africa49 be implemented, to improve the promotion of sexual and reproductive health of youth with disabilities. The country also needs to establish accountability mechanisms that can be used by persons with disabilities.
13. H Kuper et al ‘The impact of disability on the lives of children: Cross-sectional data including 8,900 children with disabilities and 898,834 children without disabilities across 30 countries’ (2014) 9 PLoS ONE 9.
15. M Deluca ‘Including children with disabilities in primary school: The case of Mashonaland, Zimbabwe’ (2014) Leonard Cheshire Disability Working Paper 26 http://www.ucl.ac.uk/lc-ccr/centrepublications/workingpapers (accessed 8 October 2020).
20. S Hoffman, L Sritharan & A Tejpar ‘Is the UN Convention on the Rights of Persons with Disabilities impacting mental health laws and policies in high-income countries? A case study of implementation in Canada’ (2016) 16 BMC International Health & Human Rights 28.
24. J Price ‘The seeds of a movement-disabled women and their struggle to organize’ 2011 Women’s Rights available at https://www.awid.org/sites/default/files/atoms/files/changing_their_world_2_-disabled_women_and_their_struggle_to_organize.pdf (accessed 30 March 2020)
29. F Mahomed, JE Lord & MA Stein ‘Transposing the Convention on the Rights of Persons with Disabilities in Africa: The role of Disabled Peoples’ Organisations’ (2019) 27 African Journal of International and Comparative Law 335.
42. MA Feldman et al ‘Relationships between social support, stress and mother-child interactions in mothers with intellectual disabilities’ (2002) 15 Journal of Applied Research in Intellectual Disabilities 314.