Is albinism a disability or not?*

 Depends: on what definition of “disability” you are using and the environment you are referring to.

There are two main definitions of “disability”: medical and social.

Medical Disability

The Persons with Disabilities Act of Uganda uses a medical definition, and 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.”

The medical understanding claims that it is the biological impairment that prevents someone from participating in life events. This view was held for a long time, but has since been replaced in the international community by the social definition of disability.

Social Disability

According to the World Health Organization (WHO), Disability is “any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being”. It then goes on to explain the additional term of “handicap”, which is a “classification of a role reduction resulting from circumstances which place an impaired or disabled person at a disadvantage compared to others”. In other words, it is not always the biological impairment, but sometimes the environment that one lives in, that determines someone’s level of participation.

This definition admits that functionality is related to technology. For example: someone born without the use of their legs is still able to attend school and hold a job, provided there are wheelchair-accessible schools and businesses.

In both the medical and social definition of disability, there is recognition that disability is the prevention of participation in life events. Medical blames the condition, while social acknowledges that one’s physical and social environment can be just as limiting, if not more limiting than a medical condition.

Is Albinism a Medical or Social Disability?

The condition of albinism affects vision and limits melanin production. Without any assistance, this means that a person who has albinism is medically disabled in so far as they cannot see well and the amount of time they can spend in the sun is restricted. But, with the use of visual aids and protective clothing and sunscreen, someone with albinism no longer meets the criteria for medically disabled.

However, in the country of Uganda, and many other places around the world, people with albinism are prevented from participating in normal life activities. Some are killed at birth, many do not attend school, and most cannot find employment. The reason for their exclusion has nothing to do with the fact that they have poor eyesight and cannot produce melanin. Instead, the reason people with albinism are unable to participate fully is because of the social attitudes people in Uganda have against the condition of albinism.

For this reason, albinism in Uganda is very clearly a social disability.

What does this mean for Ugandans who have albinism?

Since the Persons with Disability Act of Uganda does not recognize social disability, albinism is not considered a disability. This is problematic for a number of reasons. Without the recognition of disabled, people who have albinism cannot access crucial protection and services under the law.

For example: If a person with albinism is fired from a job because his/her employer says their condition is scaring away customers, there is no way to accuse the employer of discrimination. People with albinism, though rejected in similar ways as physically and mentally disabled persons in Uganda, cannot access resources and programs that have been developed specifically to combat social rejection: i.e. affirmative action.

Is albinism the only condition like this?

In Uganda, there are other groups that are also left out because of the use of a medical definition for disability. People who have sickle cell anemia and little people are two other groups that are prevented from full participation because of negative social attitudes related to their medical condition.

Currently, people with albinism in Uganda are working with disability organizations to petition the government to broaden the category disabled under the Persons with Disabilities Act. The hope is to amend this definition by the end of 2012.

In Conclusion

Albinism is not a medical disability, provided there is access to visual aids and protection from the sun. Albinism is a social disability in environments where people discriminate and prevent those who have albinism from participating in normal activities.

Sources

- WHO “Standardization in measurement of impairment, disability and handicap, as consequence of disease.” Voorburg, Netherlands. 1983

- Act 20. Persons with Disabilities Act, 2006. Acts Supplement. The Uganda Gazette No. 47 Volume XCVIX.

Printed by UPPC, Entebbe4 August 2006. 

* This was originally posted on the Discover Albinism Uganda (DISAU) website. Please go check out the website and their facebook page. I will explain in the next blog post about the organization.

Executive Summary of Preliminary Report

After many weeks of not hearing from me, I am happy to inform you that my time of absence was mostly well-spent. I have completed the first of several works about my project in Panama. My first work is a 30 page report to the Uganda Albino's Association. This report is meant to build upon my first paper Oppression Through Omission: The Human Rights Case of Persons with Albinism in Uganda, and to present the people of Guna Yala, Panama as a positive example of how Uganda might change their negative perception of albinism.

Following this report, I will begin writing an academic paper on the topic that will go into more depth about the subject. I also hope to write more blog posts and journal articles investigating the multiple facets of this project.

If you are interested in reading the report, it is available through Google Documents.
I appreciate any and all comments, questions and suggestions you might have. Also, if there is something in particular you would like to see a blog post written about, please let me know. You can leave comments on the blog or you can email me at kllyalln@gmail.com

To give you a sample, here is the Executive Summary of the report:

In the preceding report from 2010, Oppression Through Omission: The Human Rights Case of Persons with Albinism in Uganda, the status of persons with albinism in Uganda was explained as a human rights concern necessitating action of the Ugandan government. The report outlined the medical and social issues facing PWA and defined PWA as socially disabled as a result of commonly held prejudices and discriminatory practices. The paper called for a change in Uganda’s definition of disability in its 2006 Persons with Disabilities Act, in order to incorporate the internationally accepted definition of social disability.

Since 2010, awareness of the issues facing PWA in Uganda and east Africa has spread around the country, continent and world. The killings and illegal trade of body parts in the Lake Victoria region of east Africa have decreased but still continue. In October of 2011, the Ugandan government began working toward changing the Persons with Disabilities Act to include PWA, among other groups. Though the change does not recognize social disability, it has the potential to allow PWA to fight discrimination and access resources as a defined category under the law. However, discrimination of PWA threatens to undermine the importance of this legal change as well as the work of UAA and other organizations working with PWA. For this reason, this report claims social discrimination to be the greatest threat to the livelihoods of PWA.

The population of Guna Yala Panama was chosen as a comparative point of study because of its contrasting mentality towards PWA. Within Guna Yala, PWA are accepted members of society who attend school, hold positions of power, marry, have children, and live well beyond the age of 30 years despite their geographical position on the equator and limited access to resources such as sunscreen, covering clothing, and dermatologists. What makes the study more relative to the problems of Uganda is that the acceptance of albinism within Guna communities marks a significant mentality change that occurred within the last century. The history of albinism in Guna Yala, shows how many communities and a population of people were capable of embracing a group of people once killed and rejected.

This report outlines potential programs meant mimic the conditions that have positively impacted PWA in Guna Yala. The suggested actions and policies of this report are meant to complement and expand on work already being conducted. It is not meant to be a comprehensive plan of action, merely a guide to improving and perhaps redirecting the focus of current initiatives.