Albinism in Uganda

Albinism is a congenital disorder caused by having little or no pigmentation in the skin, hair and eyes. Albinism is inherited from recessive genes and affects all vertebrates in the animal kingdom. Albinism is associated with several eyesight defects like photpobia (sensitivity to light), nystagmus (rapid eye movements) and ambylopia (decreased clarity of vision). Albinos are susceptible to skin cancers because of the lack of pigmentation in their skin. In rare cases the immune system is affected leading to increased infection (Wikipedia).

Albinism affects all peoples, worldwide the incidence of albinism is estimated to be 1 in 17,000. Sub Saharan Africa has the highest incidence at around 1 in 4,000 (see The killing of persons with albinism in Tanzania : a social-legal inquiry). The 2014 population census estimates there were 34,900,000 people living in Uganda. That means there are  approximately 8,725 albinos in Uganda.

Ugandan albinos tell their stories

The report Oppression Through Omission: The Human Rights Case of Persons with Albinism in Uganda describes the position of Albinos:

The most accessible information regarding albinism in East Africa is surrounding the plight of albino persons being targeted for their body parts in Tanzania and Burundi. These events have been documented in the international scene thanks mostly to the work of a single journalist, Vicky Ntetema. The reason for the attacks that began in 2007, has been linked back to marketing schemes by witchdoctors. A complete set of body parts of a person with albinism can be sold for the equivalent of $75,000 U.S. dollars on the black market around the Lake Victoria region. As of now, there have been no documented attacks on albino persons in Uganda for purposes of witchcraft... The main problems facing persons with albinism in Uganda are due to low access to medical care and societal norms that exempt them from participation. These issues are unable to be addressed with current legal definitions of disability in Uganda...
The overarching theme of myths and misconceptions associated with albinism is that a child with albinism is a demon or a curse. Similar to beliefs surrounding persons with disabilities, it is not uncommon for an albino child to be considered a curse from God, placed on the family for something bad the family had done. Another suggested source of the child could be that the ghost of a colonialist impregnated the mother. In a similar vein, sometimes a father will assume that the mother has cheated on him with a white man. As a result, children with albinism already face the threat of being killed or abandoned by their own parents. Outside of the family, a common myth surrounding albino persons is that they don’t die, they disappear. Children are taught to run from albino persons; “An albino will eat you up!” For the most part, these perceptions are more strictly held in rural areas.
Tanzania and other neighboring countries share similar beliefs surrounding Albinism as Uganda, which have allowed witchdoctors in these countries to exploit these superstitions in order to pursue their own economic gains. Society defines what it means to be human, and when a group is defined as anything less than human, acts of discrimination become acceptable. The most devastating construct in Tanzania and Burundi is the myth that certain body parts of an albino person can bring wealth. So far, Uganda has yet to have any documented cases of albino persons being killed for the purposes of witchcraft. However, it is highly feasible that the trend will carry over into Uganda, where “they are [considered] a bit sub-human.” First, belief in witchcraft is prevalent throughout Uganda. Second, there is already an issue of child sacrifice for witchcraft purposes. Third, there are not currently laws in place protecting albino persons in Uganda. The laxity of Ugandan laws may make albino hunters more likely to cross the border, as Tanzania has already taken measures to address the issue. In addition to the appointment of an Albino Member of Parliament (MP) by President Jakaya Kikwete, between 2008 and December of 2009, 1,000 persons associated with hunting albino persons had been arrested in Tanzania.
From the time of birth, most children with albinism, particularly those impoverished and in rural areas, are immediately exposed to discrimination from within their own families. When discrimination comes from parents or caretakers, a child is constantly exposed to inhumane treatment from an early age, which has lasting effects. It is not unheard of for mothers to throw their own child away, killing or abandoning him/her because of the fear and stigma associated with albinism. Fathers are likely to abandon an albino child, sometimes along with the mother, if not outright kill the child, either from belief in the mother’s unfaithfulness, superstition, or from the stigma associated with having an albino person in one’s family. The disgrace of having an albino child can extend beyond the father and mother, causing the extended family to shun parents that have chosen to keep their child.
Growing up in such a household, can cause low self-esteem. Similar to practices in Uganda associated with disabled family members, some will force their albino child to stay in the family’s backyard, and force him or her to hide whenever anyone outside the family comes to visit. If a family goes to this extent to hide their child, it is unlikely that they will spend the school fees needed to send this child to school. The instance of persons with albinism kept from attending school has not been officially documented, but many people attested to the fact that it is uncommon for persons with albinism to be given the chance to go to school. Even if the parents are not afraid to reveal a child with albinism, an impoverished family may not be able to send every child to school. The parents may not want to “waste” money on a child with albinism, having never heard of a successful albino. This perpetuates the system of exclusion and leads to a high level of illiteracy among the albino person population. It is undocumented how large that population is in comparison to the estimated 31% of the population who is illiterate.
Individuals with albinism who are given the opportunity to go to school face additional forms of discrimination and are prevented from equal access to education, either directly or indirectly, from both peers and teachers. The lack of sensitization about the condition of albinism and the prevalence of myths and misconceptions creates an environment of fear and discrimination. Teachers are typically inexperienced with the condition. Not only does this make a teacher incapable of correcting other children’s misconceptions, it prevents the teacher from catering to the special needs of albinism, such as sitting them sit close to the front to see or excusing them from activities done in direct sunlight. In one case, the UAA (Uganda Albino Association) interacted with a village teacher who simply thought the albino pupil was a white person.
If a person with albinism is able to complete schooling, the attempt to find employment presents additional challenges of discrimination. With equal schooling, a person with albinism could easily compete in the first stage of an interview process, which is typically written submission. However, in the next stage of an application process, in many cases, “an albino cannot survive a face-to-face interview.” Blatant discrimination on the basis of the condition was commonly mentioned. Dr. Josseous recounted his own story of being denied a position in a hospital, because, “he would scare away the patients.” There are additional barriers to economic activity, as certain professions should be avoided by persons with albinism on account of their medical condition. Such professions are those that require any prolonged exposure to the sun, dealing with bright lights, such as welding, or anything requiring good vision. Due to discrimination and limitations of professions, many albino persons who work create their own forms of employment.
Though most of the superstitions surrounding albinism typically foster fear and avoidance among the general population, the marginalization of this population leaves females especially vulnerable to exploitation and abuse. It is not uncommon to hear professional albino females complain about sexual harassment and exploitation by their superiors in the workplace. An employer may use the fact that they hired the women in spite of her albinism as leverage. In many cases, women might submit, reasoning that they are lucky to have a job, and that this will just be one last trial they have to face. When asked why a man would be prompted into sexual relations with a person with albinism when this group is typically avoided, it was explained by the Chairperson of the UAA that the condition also has a certain novelty, “Men want to see if albino women are sweeter than others.” Though a man may engage in intercourse, when it comes to marriage, albino women are typically regarded as a “last resort” for men who cannot attract any other women. If an albino woman is married, she may be a later wife in a polygamous marriage. The Uganda Albino’s Association has also dealt with at least one case of a man leaving his wife who had albinism because he could no longer stand the social stigma. The issue of marriage is not isolated to women. There is another case within the UAA in which a man was rejected by his fiance’s family because of his condition.  

The report discusses how people with albinism (PWA) are not adequately represented by human rights law or legislation because they do not fall into any specific category. The paper argues that disability does not include albinism, this seems incorrect to me. It is clear that the government of Uganda is using the social model of definition as the basis for its laws.

Some of the arguments from the Oppression Through Omission: The Human Rights Case of Persons with Albinism in Uganda report that show how PWA are excluded from legislation are detailed here:

The findings of this researcher reveal a lack of inclusion in Human Rights laws beyond those most basic and applicable to all groups of persons, regardless of special needs and concerns...
The most compatible group within which persons with albinism can best fit is the current, international definition of “disabled.” The preamble of the Convention on the Rights of Persons with Disabilities (CRPD) states: “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.”
The CRPD also recognizes that the understanding of disability is something that is continuously changing. This inclusion of the sociological aspects of disabilities gives room for albinism to be included beyond merely the visual and dermatological handicap. Domestically, however, the definition is much less inclusive. According to The Persons with Disabilities Act of Uganda, disability is, “a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participation.” In the same vein, “[a] person with disability means a person having physical, intellectual, sensory or mental impairment which substantially limits one or more of the major life activities of that person.” Not only is this definition vague in its use of the term “substantial,” but it does not take into account limitation that occurs from outside of the individual...
Article 32 of the constitution provides a catch-all phrase in order to support, “groups marginalized on the basis of gender, age, disability, or any other reason created by history, tradition or custom.” Since disability does not encompass albinism in Uganda, albino persons would yet again fit under the generic “other” category. Laura Nyirinkindi, of Makerere University’s Human Rights and Peace Centre (URIPEC), points out the inefficiency in naming categories in such documents. Specifically refering to Article 32 of Uganda’s Constitution, she writes, “Sometimes to list is to limit...To this effect, policies have been developed in this very rigid categorization, ignoring other marginalized groups.”...
Currently, there is no agreement amongst Human Rights or Disabled organizations, or even within albino organizations themselves regarding what category albinism should fit under, or if they deserve their own category. Much of this confusion stems from the fact that the terms of “race,” “minority,” and “disabled” are defined differently depending on the organization. Another question is regarding the benefits that each category could grant persons with albinism...
The issue of labeling albinism as a disability in Uganda revolves around the 2006 Persons with Disabilities Act (PWD Act). Overall, there is a problem of clarity: what does “significant” mean? In the case of albinism, it is not clear that any of its associated medical problems would constitute a “significant” disability. While lack of skin pigmentation is a medical concern and a threat to life, particularly in tropical climates and without proper access to sunscreen, it doubtful whether this should count as a “significant.”...

The crux of the matter is: Can PWA fit into existing legislation under the category of disabled? The report calls for PWA to be recognized as disabled and therefore be included in existing legislation and be represented by by disability rights advocacy groups.

It seems clear to me that PWA are disabled by the society they live in. In this case the disability is significant. See this explanation of the social model of disability taken from Models of Disability:

The social model sees the disability as the result of a person with an impairment living in a world with barriers. These barriers present themselves in many forms, including technological, physical, communication and in social attitudes. The social model purports that for full inclusion, there must be significant changes made and barriers removed so that people with disability can participate on an equal basis within society.

To understand how such a definition of disability might work, Defining Impairment within the Social Model of Disability says:

DISABILITY is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity. (Therefore disability, like racism or sexism, is discrimination and social oppression).
IMPAIRMENT is a characteristic, feature or attribute within an individual which is long term and may, or may not, be the result of disease, genetics or injury and may:

1. Affect that individual’s appearance in a way which is not acceptable to society,
And / or
2. Affect the function of that individual’s mind or body, either because of or regardless of society,
And / or
3. Cause pain, fatigue, affect

This covers people with learning difficulties, physical impairments, sensory impairments, facial disfigurement, speech impairment, mental illness, mental distress.
Impairment neither causes, nor justifies disability; however only people with impairments are subject disability; they may also experience other forms of oppression simultaneously.
Disabled people are those people with impairments who are disabled by society.

As I was walking around Moscow a few days ago (I live in the Russian Federation) I was thinking about my own status. I do not speak Russian very well. According to the social model of disability, I encounter significant barriers accessing my needs in daily life. I am impaired by my lack of language skills. However there are trained people available to help me access my needs. These are people that speak English and can interpret for me. Occasionally I experience significant barriers when there is no one available to understand my needs. There is little doubt that I am disabled by my lack of knowledge of Russian, how much more so are Albinos affected by the social barriers of prejudice, stereotyping and stigma?

It seems clear that Uganda defines disability in a way that conforms to the social model of disability, (see UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES: Uganda’s Initial Status Report 2010):

The Persons with Disabilities (PWD) Act 2006 defines disability as “a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participation”. By recognizing that disability is the result of the interaction between impairment and external barriers, the PWD Act aligns the legal definition of disability in the Ugandan law to that enshrined in the CRPD (Conventiion on the Rights of Persons with Disabilities) implying a significant paradigm shift away from the medical/charitable models, to understanding disability as a social phenomenon. Furthermore, of particular value is the recognition that physical, mental and sensory impairments, can all result in a disability.

In summary, it seems clear that PWA are fully supported by Ugandan legislation. Everyone needs to be clear that PWA face prejudice, stereotyping and stigma throughout their lives and this creates significant barriers. PWA are a variation of the genetic code among human beings. Is it right that a small section of Ugandan society should live in fear for their lives because of ignorance and superstition?

For more information contact the Africa Albino Foundation Uganda (AAFU).