Impact of climate change on the rights to health and life of persons with albinism: What are South Africa’s obligations?

2.3.1 The intersection between climate change and human rights

The application of human rights to climate change is still in its early developmental stages, however, the connection between climate change and human rights is undeniable. Knox for instance, examined whether the effects of climate change interfered with the full enjoyment of human rights recognised in international law.25 Drawing from the livelihood of the Inuit Indigenous peoples living in the Arctic region (classified as a vulnerable community) he observed that rising temperatures in the Arctic due to climate change infringed on the Inuit’s human rights such as life, property, and health. 26 Cullet, on the other hand examined the extent to which the climate change regime has addressed the human rights dimension of climate change. 27 He explored the human right to a clean, healthy and sustainable environment as an underlying conceptual framework for considering the link between human rights and climate change, acknowledging climate change as part of the corpus of international environmental law. Cullet observed that despite the obvious intersection between the two regimes, the foundational framework of the climate change regime (the 1992 UNFCCC and 1997 Kyoto Protocol) refrained from addressing human rights directly. 28

In 2007, the Male Declaration on the Human Dimension of Global Climate Change marked the first occasion climate change was linked to human rights. In the declaration, representatives of the small island states recognised climate change as a threat multiplier, posing harm to the environment, individuals, and global communities. The declaration observed that ‘climate change has clear and immediate implications for the full enjoyment of human rights’.29 To corroborate this observation, the HRC has since adopted several resolutions highlighting the link between climate change and human rights.30 A common feature in these resolutions is the Council’s observation that the adverse effects of climate change have a range of implications for the enjoyment of a wide range of human rights such as the right to life, food, water, and adequate housing. The Council also noted that the effects of climate change are felt most acutely by vulnerable groups such as children, Indigenous peoples, elderly people, women, and persons with disability. Importantly, the council stressed states’ obligations to protect human rights from the harmful effects of climate change,31 a matter addressed in section three.

Over the years, OHCHR has organised annual HRC panel discussions on climate change, covering diverse subjects such as climate change and the rights of the child;32 climate change and migration;33 climate change and the right to health;34 and the impacts of climate change on the rights of persons with disabilities35 which is the focus of this article.

2.3.2 Climate change and disability

Climate change has widespread impacts on human rights. However, for an estimated one billion people globally living with some form of disability, nearly 200 million of whom face significant challenges in daily functioning,36 adverse effects of climate change are experienced differently and more severely. Consequently, the HRC requested the OHCHR to prepare ‘an analytical study on the promotion and the protection of the rights of persons with disabilities in the context of climate change’37 to better understand their plight. The study observed that sudden-onset natural disasters and slow-onset events seriously affect persons with disability’s access to food, safe drinking water, sanitation, healthcare services, education, adequate housing, and access to decent work.38 Furthermore, persons with disabilities were identified amongst the most adversely affected in emergencies, sustaining disproportionately higher rates of morbidity and mortality, while being among those least able to access emergency support.39

2.3.3 Climate change and albinism

One impact of climate change on persons with albinism’s health is increased global temperatures. According to the IPCC climate change synthesis report of March 202340 in all regions weather and climate extremes have become more widespread and pronounced. Projected increases in average seasonal temperature and the frequency and intensity of heatwaves contribute to heat-related illness.41 Heatwaves increase the incidents of respiratory, cardiovascular diseases, and clinical heatstroke. Furthermore, during a heatwave, the levels of ultraviolet (UV) radiation also increase,42 and this is detrimental to persons with albinism. It has been observed that as average global temperatures rise, so do human mortality and morbidity,43 and persons with albinism bear the brunt of deadly heatwaves fuelled by climate change.

2.3.4 The right to health and life of persons with albinism

Climate change poses a great threat to a wide variety of rights. These include the indivisible and interdependent rights to health, food, water, housing, and life. The interdependent nature of these rights is especially visible in the context of the rights to health and life. The enjoyment of the right to life is contingent upon good health. The right to life is supreme, with no derogation permitted even in situations of environmental degradation due to climate change.44 Equally, the right to health is a fundamental human right and everyone is ‘entitled to the enjoyment of the highest attainable standard of health conducive for living a life in dignity’.45

The right to life is inherent to every individual and is protected by several human rights instruments.46 Concerning disabled persons, article 10 of the CRPD reaffirms the inherent nature of the right to life and states’ duty to ensure its effective enjoyment by persons with disability on an equal basis with others. Analogously, article 8 of the African Disability Protocol provides for the right to life and elaborates in article 8(2)(b) that persons with disability must be guaranteed access to services, facilities, and devices enabling them to realise their right to life and live in a dignified manner. In view of this article, it can be interpreted that the services that are referred to include healthcare services. This leads us to the interconnected right to health.

Like the right to life, the right to health is recognised in several international instruments.47 Nevertheless, the Preamble of the CRPD recognises the importance of the right to health in enabling persons with disabilities to fully enjoy rights and fundamental freedoms. Additionally, article 17(1) of the African Disability Protocol affirms that ‘[e]very person with a disability has the right to the highest attainable standard of health’.48 The Constitution of the World Health Organisation (WHO) conceptualises health as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’. 49 The reference in article 17(1) to ‘the right to the highest attainable standard of health’ in the African Disability Protocol is not confined to the right to healthcare. The right to health, as well as the right to life, embrace a wide range of socio-economic and environmental factors that promote the realisation of the rights.

Thus, both rights are dependent upon the availability of safe drinking water, food, quality healthcare, and a healthy environment amongst other things.50 A healthy environment is inter alia non-toxic, free of pollutants, and has a safe and stable climate.51 Climate change contributes to the increased frequency of extreme weather events such as rising sea water levels, droughts, floods, and heatwaves. These extremes impact the right holders’ rights to health and subsequent life. All things considered, the UN Human Rights Committee observed that climate change constitutes one of the ‘most pressing and serious threats to the ability of the present and future generations to enjoy the right to life’.52 Correspondingly, WHO observed that climate change has adverse impacts on the enjoyment of the highest attainable standards of mental and physical health. 53

Certain population groups are particularly vulnerable to the health effects of climate change due to physiological factors. Albinism, for instance, leads to a heightened susceptibility to skin cancer that is fatal if left untreated, and climate change further elevates this risk amongst persons with albinism. Their susceptibility to skin cancer is due to a lack of or inefficient protection against harsh UV rays or sun exposure because of low skin pigmentation. In Africa skin cancer is a significant cause of deaths for persons with albinism.54 Ninety-eight (98) per cent of persons with albinism do not live beyond the age of 40 because of sun exposure, with skin cancer responsible for at least four-fifths of these deaths.55 A sub-Saharan African study indicated that in addition to the skin cancer, persons with albinism may suffer sunburn and skin photoaging, which can lead to lentigines (small, flat, brown spots), freckles and heavy wrinkling of the skin.56

Apart from increasing the risk of fatal skin cancer for most persons with albinism, climate change directly impacts their eye health. Visual impairment is another physiological consequence of albinism common to individuals who have ocular albinism. This impairment varies from mild to severe, with many persons with albinism considered legally blind.57

UV radiation has been linked to the increase of ocular tumours and cataracts,58 along with increased risk of retinal detachment.59 Clearly, exposure to extreme sunlight rays affects persons with albinism’s eye health as they are more sensitive to bright light and experience a lot of discomfort from sunlight exposure.

Beyond the direct impacts on the eyes and skin, climate change can also overwhelmingly affect the mental health of persons with albinism60 through direct impact on their physiological well-being. Those residing in the warmer geographical regions with less adaptive measures face higher risks of stress, anxiety, and depression during climate induced weather extremes such as heatwaves. Because climate change exacerbates their existing genetic defects and threatens their mortality, people with albinism are more conscious of their physiological conditions. They are more apprehensive about being outdoors and about being exposed to the sun for longer periods because this could be a life-threatening situation. Also, they may worry about procuring quality sunscreen and protective gear, which is expensive for many persons with albinism who live in poverty.61

As highlighted, climate change has direct adverse effects on the physiology and mental state of people with albinism. However, it is important to recognise its indirect effect on their access to essential resources. One of the key elements of the right to health is the right holders’ entitlements and determinants to health.62 Thus the right contains entitlements such as access to essential medicine,63 and the determinants include adequate housing amongst other things. In the event of a climate change disaster, for example, flooding, landslides, and wildfires, persons with albinism may struggle due to disrupted healthcare access. During extreme weather events, accessing sunscreen, protective wear, visual aids, and essential medicines or treatment becomes challenging. Additionally, lack of proper shelter and infrastructure, and disruption to transport networks means persons with albinism may spend significantly more time exposed to the sun, thus increasing their risk of skin cancer. To corroborate this view during Muluka-Anne Miti-Drummond’s mandate as the independent expert on the enjoyment of human rights by persons with albinism she received reports that the care packages for those affected by tropical Cyclone Freddy (in Madagascar, Malawi, Mozambique, South Africa, and Zimbabwe) lacked sun protection products. In Mozambique, an organisation working on issues concerning persons with albinism visiting resettlement centres for the victims of Cyclones Eloise and Idai identified cases where children and adolescents with albinism were ‘housed in humanitarian tents that were not appropriate for their condition owing to the heat accumulating inside, causing discomfort and skin damage’.64

3.1.1 Obligation to mitigate climate change and respect human rights

South Africa is among the world’s largest greenhouse gas emission emitters. Its emissions mainly stem from heavy reliance on coal for electricity generation, potentially indicating a failure in its mitigation duties. On the one hand, the obligation to mitigate entails the avoidance and reduction of heat trapping greenhouse gas emissions in the atmosphere to prevent the planet from warming to more extreme temperatures. Article 3 of the UNFCCC notes that states ‘should take precautionary measures to ... minimise the cause of climate change and mitigate its adverse effects’. On the other hand, the obligation to respect fundamental rights dictates that states must refrain from interfering with or limiting the enjoyment of rights.76 While these obligations appear unrelated, I submit that states obligation to mitigate climate change has a bearing on the obligation to respect human rights.

Under international law a state may violate a right through its acts, or omissions.77 In the context of climate change, a state’s action or inaction can therefore violate human rights. When addressing climate change, a state simultaneously executes its human rights obligation to respect. Conversely, when a state fails to reduce its greenhouse gas emissions it will interfere with and therefore will not respect individuals’ rights. To successfully tackle climate change, South Africa must refrain from interfering in the enjoyment of persons with albinism’s rights by avoiding activities contributing to climate change. Mitigating climate change may involve inter alia decreasing its reliance on fossil fuels and transitioning to renewable energy sources. While the State’s mitigation duties are directed at enhancing its commitment to reducing climate change, its obligation to respect human rights is centred toward bearers of right.

Regarding an omission, article 4(1)(b) of the UNFCCC notes that:

All parties, taking into account their common but differentiated responsibilities ... shall formulate, implement ... national programmes containing measures to mitigate climate change by addressing anthropogenic emissions.

In this regard, South Africa will be deemed to be in breach of its climate change obligations if it fails to implement legislative measures aimed at achieving its nationally determined contributions.78

Mitigating climate change is not only an environmental responsibility, but also a human rights obligation. The obligation to mitigate and respect are interrelated, addressing climate change is essential for respecting and protecting human rights.

3.1.2 Obligation to protect

The obligation to protect requires states to safeguard individuals and groups from human rights abuses. In the CRPD and the African Disability Protocol, under articles 11 and 12(a) respectively, states are obliged to protect persons with disabilities, including those with albinism, in situations of risk and humanitarian emergencies. These situations according to the CRPD and African Disability Protocol include ‘armed conflict, forced displacements, humanitarian emergencies and natural

disasters’. 79 Since climate change is deemed a humanitarian crisis, its impact can be classified as a humanitarian emergency or natural disaster. The SERAC case aptly noted that the obligation to protect ‘requires the state to take measures to protect beneficiaries of the protected rights against political, economic, social, [and to add on the list environmental] interferences’. 80 Thus, for example, in the case of an extreme heatwave the government must take all necessary measures to ensure the protection and safety of persons with albinism in situations of risk to life and health. Articles 11 and 12(a) provide a HRBA entry point to humanitarian responses and ultimately ensure that climate change programmes and policies, as well as prevention, planning, and responses, are fully inclusive of persons with albinism.81

The obligation to protect also means that states have a responsibility to protect persons with albinism rights from third parties, like private businesses. In this regard, states must take measures to protect persons with albinism against harmful environmental interferences detrimental to their well-being. This entails the creation and maintenance of an atmosphere or framework by an effective interplay of laws and regulations so that persons with albinism can freely realise their rights. To this end, South Africa must therefore regulate the activities of private businesses emitting greenhouse gas emissions. In a joint statement with four other treaty monitoring bodies, the CRPD committee stressed states’ obligations to regulate private actors and hold them accountable for climate harm occurring domestically and extra-territorially. It warned that ‘failure to ... regulate activities contributing to such harm, could constitute a violation of states’ human rights obligations’.82

3.1.3 Obligation to promote

Articles 1 and 4 of the CRPD, and Preamble, and article 4 of the African Disability Protocol, collectively note that state parties are to promote the rights of all individuals, which includes persons with albinism, to enable them to fully enjoy their human rights and fundamental freedoms. In the SERAC case the court opined that to promote the enjoyment of all human rights

[s]tates should make sure that individuals are able to exercise their rights and freedoms, for example, by promoting tolerance, raising awareness, and even building infrastructures [which can include legal infrastructure].83

The idea of raising awareness regarding persons with albinism at various levels of society is widely canvassed in the CRPD. Article 8(1) of the CRPD stipulates that state parties assume the responsibility to

adopt immediate, effective and appropriate measures: (a) To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities.

Recently it was reported that there is a lack of awareness among persons with albinism about their physiological state, how climate change exacerbates their health condition and how to protect themselves against UV radiation.84 Furthermore, other key stakeholders such as health practitioners lack awareness about the health needs of persons with albinism, especially concerning their skin condition.85 There are records capturing cases were persons with albinism with skin cancer have been misdiagnosed and discharged based on the belief that their skin condition was a normal part of their condition.86 To this end, the government is duty bound and recommended to promote the training of health professionals and staff working with persons with disabilities to protect the rights recognised in the present Conventions so as to better provide the assistance and services guaranteed by those rights. 87

3.1.4 Obligation to adapt to climate change and fulfil human rights

States often find themselves in a realm of greatly enhanced environmental uncertainty with extreme unpredictable weather patterns. As climate change impacts continue to emerge, states must respond either by mitigating 88 or adapting. Climate change adaptation involves acclimatising, and as noted by Voight, it can either be anticipatory or responsive.89 Anticipatory action involves implementing measures before the occurrence of an extreme event, such as constructing climate-resilient structures. This includes building shelters friendly to persons with albinism, featuring thermal insulation on the walls and roof, as well as ultraviolet-protective window film. Voight also notes that responsive action ‘requires the capacity to react once the extreme event takes plac90e’. However, I submit that responsive adaptation need not be taken as a responsive strategy to a singular catastrophic event, it may be action taken in response to conditions that have already changed, namely a climate crisis, considering the specific needs of persons with albinism.

Recognising that adaptation can significantly reduce vulnerabilities to the impacts of climate change, parties to the UNFCCC in article 4(1)(b) committed to implementing national programmes containing measures to facilitate adequate adaptation to climate change. Additionally, in article 7 of the Paris Agreement, parties established global goals on adaptation. In terms of article 7(5) parties recognised that ‘adaptation action should follow a ... participatory and fully transparent approach, taking into consideration vulnerable groups’. This means that states that ratified the agreement such as South Africa,91 are obliged to ensure that appropriate adaptation measures are established to reduce human vulnerability to climate change especially those greatly affected by its negative impacts such as persons with albinism.92 When a state executes its national adaptation measures in an anticipatory or responsive manner, it subsequently meets its obligation to fulfil persons with albinism’s rights and freedoms under the disability and climate change instruments. Like the obligation to adapt, the obligation to fulfil creates a positive obligation on the part of the state to move its machinery towards the actual realisation of the rights.93 As noted above, this could include the direct provision of basic needs such as shelters designed for persons with albinism which incorporate high-quality insulation materials in the building to minimise heat transfer. Additionally, the state must increase the availability of affordable and quality healthcare for persons with albinism, providing sunscreen with a high sun protection factor (SPF), and protective clothing such as long trousers, long-sleeved tops, and hats made from dense ultraviolet-resistant material.94 All these essentials, which I term a ‘persons with albinism protection package’ are vital to ensure they enjoy the highest attainable standard of health and ultimately right to life. The government must also make certain that persons with albinism have access to dermatologists to treat skin lesions, and oncologist practitioners who will be available for the treatment of cancer. All these actions will ultimately enable persons with albinism to fully realise their right to health enshrined in article 17(1) and recognised in the Preamble of the African Disability Protocol and the CRPD respectively.

Some may however argue that the suggested protection package and free specialised healthcare lie beyond government’s available resources, and climate change affects everyone hence, everybody needs protection. It is crucial to acknowledge people with albinism peculiar vulnerabilities that are exacerbated by climate change. In this regard, the government is obligated to provide services that meet their survival needs, and it must do so in a manner that is reasonable in both conception and implementation.95 Additionally, the state must takes into account available resources, and the urgency of the need of vulnerable groups as emphasised in Grootboom and subsequent cases.96 Vulnerable groups’ interests or those whose needs are most urgent are of greater importance and require a higher level of protection, 97 and there is none so vulnerable as persons with albinism whose very survival is threatened by climate change’s adverse impacts.

In essence, the obligation to adapt is interlinked with the obligation to fulfil human rights, creating a comprehensive approach to addressing the impact on vulnerable groups like persons with albinism. Although providing essential services to persons with albinism may stretch the government’s available resources, the reasonableness standard dictates that the government acknowledge their unique vulnerabilities, which are exacerbated by climate change, and take appropriate measures to address their needs in a timely and effective manner.

3.3.1 Obligation to facilitate effective public participation

The state’s obligation to facilitate the effective participation of persons within its jurisdiction in decision-making and policies stems from the right to participate in public affairs. Both article 29(b) of the CRPD and article 21 of the African Disability Protocol acknowledge the right of persons with disability to participate in public life. States are tasked with actively promoting an inclusive environment where individuals with disabilities can fully participate in public affairs without discrimination. The term public affair ‘covers all aspects of public administration and formulation and implementation of policy at international, national, regional, and local levels’.117 It is unquestionable that this duty encompasses decision-making in relation to climate policy.

In the climate change regime, states have long emphasised the importance of facilitating an effective public participation process in addressing climate change. This facilitation is crucial for safeguarding a broad spectrum of rights against environmental harm. Moreover, public participation serves as a mechanism for integrating public concerns and knowledge into policies and decision-making affecting the environment.118 The UNFCCC article 4(1)(i) as read with article 6(a)(iii) notes that state parties shall encourage, promote, and facilitate public participation in addressing climate change and its effects and developing adequate responses. Similarly, the Paris Agreement requires state parties to collaborate on implementing measures that enhance public participation.119 South Africa having ratified both instruments120 has implemented laws that provide for public participation in legislative processes.

South Africa upholds participatory rights in terms of sections 59(1)(a) and 72(1)(a) of the Constitution which imposes a duty on the government to facilitate public involvement in decision-making. Drawing on the Doctors for Life case121 in the South African Iron and Steel Institute case,122 the Constitutional Court clarified that the primary purpose of public participation is to influence decision-making processes affecting individuals. Institutions with decision-making powers must involve those likely to be affected by national policies. 123 In the context of this discussion, any decisions on climate change should follow a participatory approach, considering the view of vulnerable groups such as persons with albinism, with a view of integrating adaptation measures into relevant socio-economic and environmental policies and actions.

To uphold effective participation standards, the public must be informed, educated, and given a meaningful opportunity to participate in decisions-making. Hence, persons with albinism need awareness on climate change, education on its consequences and related adaptive measure thereof. The CCB underwent public consultations and generated modest public interest, with approximately 13 200 written submissions received by Parliament.124 On the face of it, it may appear as though the legislature took steps to afford concerned citizens a reasonable opportunity to participate effectively in the law-making process. After all the CCB has a provision to this end. Article 3 which was retained in the CCA notes that the interpretation and application of the Act must be guided by

[the] need for decision-making to consider the special needs and circumstances of localities and people that are particularly vulnerable to the adverse effects of climate change, including vulnerable workers and groups such as women, especially poor and rural women, children, especially infants and child-headed families, the aged, the poor, the sick and persons with disability.

However, the article suggests, based on the public hearing footage, there may not have been enough substantive engagement, particularly from those significantly affected by climate change.Top of Form