Panel 1: "Research and education: race and disability"
Flipped webinar (9/Jul/21): 'Intersectional Approaches to Disability and Race' (here)
“Visible” yet “invisible”: Counting albinism and kyphosis in Sub-Saharan African censuses
Francisca Anita Adom-Opare
PhD student at the Centre of African Studies, The University of Edinburgh
The understanding of disability in Africa is rooted in cultural and religious beliefs that are mostly discriminatory (Bayat, 2015; Nyangweso, 2018). I draw from Abudu and Imafidon’s (2019) terminologies of “persons with universal disabilities” and “persons with particular disabilities” to explain further the African disability typology. According to them, “persons with universal disabilities,” such as the visually impaired and the physically impaired, fall within the categorisation of common/widespread human difference. In contrast, persons with albinism and kyphosis, which Abudu and Imafidon refer to as “persons with particular disabilities” (ibid.), fall in the category of uncommon human difference. Rather than recognised as persons with disabilities, they are termed mysterious beings with special powers (Abudu and Imafidon, 2019; Kossoff, 2020). Consequently, persons with particular disabilities are often attacked and slain to amass wealth and power in the spiritual realm (OHCHR, 2013; UN, 2015).
Albinism is a rare, non-contagious, genetically inherited condition that occurs worldwide regardless of ethnicity or gender. It commonly results in the lack of melanin pigment in the hair, skin, and eyes, causing vulnerability to sun exposure. The prevalence of albinism in Sub-Saharan Africa is higher than the global average of 1 in 17,000. According to the UN (2015), as high as 1 in 5000 Sub-Saharan Africans (example: 1 in 1400 Tanzanians, 1 in 4000 South Africans and 1 in 5000 Nigerians) live with albinism compared to 1 in 20,000 Americans and Europeans.
In Sub-Saharan Africa, ritual killings and attacks of persons with albinism are underreported. In Malawi for instance, it is estimated that 30% of cases are officially reported, with estimated cases of 148 between 2014 and 2018. The Office of the UN High Commissioner for Human Rights (OHCHR), indicates that “a lucrative and macabre market” has emerged in the sale of body parts of persons with albinism ranging from $2000 to $75,000. Infanticide and sexual assaults in the form of sex with females with albinism is seen as a panacea for HIV/AIDs continue to permeate Sub-Saharan Africa. These attacks and killings have led a few Sub-Saharan African countries, such as Malawi, to recently (2018) recognise “albinism” as a disability component for data capturing in its national census.
Kyphosis is an excessive spinal curve that can cause lasting health issues. “Angular kyphosis is a concentrated spinal impairment with a sharp angulation. It is observed in persons with congenital kyphosis, post-tuberculosis kyphotic impairment, etc." Kyphosis is a common health condition (Kandola, 2019). Unfortunately, statistical data on persons with angular kyphosis are lacking; where data is available, it is scattered and limited to their grisly attacks and killings. Sub-Saharan African national census data continues to cast a blanket of invisibility on them, and currently, no statistical data on persons with angular kyphosis exists in Sub-Saharan Africa, that I have encountered. In Nigeria for example, where increasing reportage shows attacks on persons with angular kyphosis for ritual purposes such as killings for wealth creation in the spiritual realm – similar to persons with albinism – they are not included in the national census.
Counting albinism and kyphosis
Persons with particular disabilities, such as albinism and angular kyphosis, face severe discrimination due to impairment-specific ableism and cultural understanding of disability; but the consequence of neocolonial measuring practices is that they are not counted and thus not included as disability data. Capturing contextually relevant disability data is central to achieving disability-inclusivity in development.
In measuring disability in Sub-Saharan Africa, tools have been designed predominantly by the Global North compared with those emerging from the Global South. This does not afford Sub-Saharan African countries the platform to measure disability based on local knowledge. The United Nation’s Convention on the Rights of Persons with Disabilities (UN CRPD) stipulates the human rights and full participation of persons with disabilities in national development. With 50 Articles under the Convention, Article 31: “statistics and data collection” specifies that countries should take appropriate measures to collect disability data. How do Sub-Saharan African countries collect appropriate disability data if the understanding of disability is rooted in neocolonialism devoid of the cultural and religious understanding of disability in Sub-Saharan Africa? In the bid to create an accurate and complete database on persons with disabilities, the UN, and other international organisations, such as the World Health Organisation (WHO), propose that countries use internationally comparable disability measurement tools such as the Washington Group of Questions. However, these tools mostly fail to capture certain disability typologies, such as albinism and angular kyphosis, relevant to Africa.
For national censuses, which this paper focuses on, countries are encouraged to use the Washington Group of Short Set (WG-SS) to measure disability in developing countries. To reiterate, the engineers of these measurements are predominantly from the Global North, and, despite periodic consultative reviews with representatives of international statistical offices, non-governmental organisations, Global North and Global South countries, these measurement tools are far from including African knowledge on disability. In these consultative processes, we need to question who does the categorizing, engineering, and whose voices are being centred. These measurements are paraded as the endorsed tools to be used by countries that have ratified the UNCRD and also in disaggregating data by disability in the Sustainable Development Goals. The over-dependence on these Eurocentric tools mirrors progressive colonialism. Sub-Saharan African countries rely heavily on these measurements which largely stifles the inclusion of African knowledge.
It is only when Sub-Saharan African countries are confronted with glaring mishaps that they are moved to some form of decolonising thoughts and measurements, although in very limited forms. For instance, in the case of Malawi, provisions are made to include questions on albinism in the national census in addition to the WG-SS. In most of these countries, the national census reports on disability statistics focus on universal disabilities because those are the tenets of the international comparable tools. Despite the growing attacks and killings on particular disabilities, most Sub-Saharan African countries do not recognise “particular disabilities” as disabilities to be recorded during census for effective planning.
Snippets of attacks and killings
Four officially reported cases of attacks and killings of persons with albinism and angular kyphosis are presented here. All or most of the cases may trigger unsettling emotions when reading but they need to be presented to unearth the cost of ignoring African knowledge which should inform measurements. All the accounts of albinism were taken from the 2021 UTSS report (note: no start date exists for the documentation of reports under 2021; I use 2008, the date UTSS was established) and the UN Independent Expert on Albinism, while the reports for the angular kyphosis were taken from UNHCR (Canada Division) and Pulse Nigeria websites.
According to the 2021 UTSS report, a total of 621 cases across 29 Sub-Saharan African countries have been officially verified from 2008 to date. 35% of these cases constitute death/killings. This means that each year approximately 48 attacks with a third of them resulting in death are experienced by persons with particular disabilities. The report confirms the assertion of the huge underreporting of these discriminations.
In Eastern Africa, in May 2021, a boy with albinism, between the ages of 5 and 6 (name and residence unknown), was brutally mutilated and his remains discovered by villagers in the bushes of rural Usadala, Tanzania. According to witnesses, the body was found with removed arms, eyes, left ear, and genitals.
In Southern Africa, on January 27, 2021, a 26-year-old man with albinism, Saidi F. Dyton was brutally murdered near his home in Kadewere village, Malawi. Suspects intended to transport the body to Zomba city, where it would be sold to an alleged buyer for witchcraft.
In Central Africa, on August 13, 2019, a 17-year-old boy with albinism went missing in Mugina, Burundi. The dismembered body was found near the banks of Rusizi River, his right leg at the knee, his right arm and his tongue had been cut off. The boy’s family is devastated at the loss and the prospects of their 8-year-old daughter with albinism.
In West Africa, on February 15, 2017, a 62-year-old man with angular kyphosis was killed for ritual purposes at Arue, Edo State in Nigeria. His hunch had been taken and placed in a pot of honey for preservation as murders transported it to Ondo state.
These substantiated attacks and killings are widespread in Sub-Saharan Africa. Without national surveys to capture disability data on persons with albinism, angular kyphosis and other particular disabilities, violations/discrimination continue to dominate, inequalities and barriers cannot be captured, policies and interventions cannot be created, and rights cannot be exercised.
An overreliance on neocolonial disability measurement tools, such as the WG-SS, is detrimental without its Africanisation, in Africa, and for African purposes. By epitomizing disabilities that fit only into the European conceived idea of disability, most Sub-Saharan African countries exclude the most marginalized and vulnerable persons with disabilities, making some disabilities visible and others invisible. Although the problem goes beyond the Africanisation of disability measurement tools and policies; to include greater disability awareness and sensitization; accurate counting during national censuses is the first step towards achieving visibility and proper evidence-based interventions. Greater disability awareness and data management within an African context should be the way forward.