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Uganda: In the stories of people with disabilities, Shonali Shome hears familiar strains and crucial lessons for AIDS activists.
Kampala, May 12, 2008 — I joined a table of 15 women and a few men in the sunny garden of Kampala’s Hotel Africana. We were gathered for the three-day meeting of the Africa Campaign on Disability and HIV/AIDS, and the topic of this smaller discussion was “Mainstreaming Women and Girls with Disabilities.” The group consisted of blind women, deaf women and women with mobility impairments representing countries throughout Africa – Malawi, Ethiopia, the Democratic Republic of Congo, Senegal, Uganda, and Mozambique.
The session began with a presentation on societal myths and discrimination against women with disabilities, but it was when the discussion turned to familial stigma that everyone got involved. Participants discussed how parents lack information on how to support children with disabilities and often claim it is a “waste of time and money” to invest education or effort in their disabled children. Because it is assumed that girls with disabilities will not marry, families often fail to give them information on sexuality, leaving them vulnerable to HIV and unwanted pregnancy. There were reports of parents giving away their disabled daughter as a “bonus” when a non-disabled sister got married. The power of this familial stigma is strong, and it was an emotional discussion for many members of the group. Before being marginalized by a community, they explained, discrimination against people with disabilities comes first at the family level. One young woman’s comment poignantly captured the discussion – “a mother,” she explained, “is the first one who deprives a girl with disabilities of being a girl.”
The experience of familial stigma that these women shared is reflected in the small amount of data that is available about people with disabilities in Africa. Local customs and religions may view disability as a curse, or the “manifestation of sin and disgrace in the family.” These pervasive beliefs can cause parents to lock their children in the home and refuse to send them to school. In a Zimbabwe survey of people with disabilities, a third of the interviewees reported they did not go to school because family members considered them incapable of learning. This assumption was even stronger for girls with disabilities, with most families keeping their disabled daughters in the home, believing they are even less able to learn than boys. The study confirmed that challenges for people with disabilities “start right at the family level,” often preventing any possibility for education or independence. The Ugandan Daily Monitor newspaper reports that only between 1-2% of disabled children in Africa receive an education. Other surveys reveal that of the disabled children in Uganda who do make it to primary school, only 4.6% manage to go onto secondary and post secondary institutions. Poverty can worsen discrimination against children with disabilities. The cost of school fees and supplies is prohibitive for many families, and with limited resources a non-disabled child is often given priority.
AIDS-Free World is focusing advocacy efforts on the overlap of HIV and disability. There are many reasons we believe it is crucial for AIDS organizations to better address the needs of people with disabilities. We know that an increasing number of people with disabilities are contracting HIV, and that all of the risk factors associated with HIV are increased for individuals with disability: poverty, severely limited access to education and health care, lack of information and resources to ensure ‘safer sex,’ lack of legal protection, increased risk of violence and rape, and vulnerability to substance abuse. We know many people with disabilities have little or no access to HIV prevention information and, once infected, are often unable to obtain treatment or care.
Yet as these women were sharing their very personal experiences of discrimination, I began to see many other links between AIDS and disability, and many other reasons to address them together. As they spoke, I saw that, just as with AIDS, the stigma around disability reaches insidiously into our most personal and intimate relationships and networks of support. Disability, like AIDS, can cause our most trusted allies – mothers, fathers, siblings, lovers – to turn against us in fear and shame. Just as people with disabilities may be hidden or rejected by their families, there are countless reports of people being shunned by their families once they discover they are HIV positive. Women are frequently abandoned by husbands, disowned by parents, or forced out of their homes by in-laws. And the stigma surrounding both AIDS and disability is lethal. People who suspect they may be HIV-positive avoid getting tested because of the stigma of the disease itself; many individuals with disabilities do not access HIV testing or treatment because of the stigma around disability. In both cases the result is that people are dying needlessly.
Stigma is not the only link between AIDS and disability. Disability, like AIDS, disproportionately harms women. Disability, like AIDS, is intricately intertwined with poverty, war, and social and economic marginalization. Disability, like AIDS, implicates the right to life, to human dignity, to health, to education, to have children, to non-discrimination and equality before the law. Disability, like AIDS, can happen to us at any point throughout our lives. And the disability movement, like the AIDS movement, consists of individual heroes who are speaking out in their communities against stigma, without fear or shame, opening the door for others to come forth and to be supported.
The recently ratified U.N. Convention on the Rights of Persons with Disabilities is a monumental success achieved after years of advocacy by disability rights activists. It codifies the rights and dignity of people with disabilities in international law. As a legal victory it is incredibly significant and its potential to advance human rights is irrefutable. My colleagues at AIDS-Free World will join activists around the world working diligently for universal ratification of this Convention, seeking to guarantee the right to health, life, education and dignity for people with disabilities. Yet the women gathered at the hotel in Kampala make the compelling point that our dignity begins first with our parents, our families, our local communities – those very closest to us. As we work toward universal ratification of the Convention, as we work for improved legislation around both disability and HIV/AIDS, we must also address the complex and firmly entrenched stigmas that exist within families and communities. The task is daunting yet also empowering. It reminds us that, equally powerful as a convention or a law, is the individual voice that breaks the conspiracy of silence within a family or village or community. It reminds us that the potential for transformative change exists at all levels of society.
And this is where the AIDS movement has much to gain from the disability movement – a movement that has long fought, and continues to fight, both familial and societal stigma. A movement that – in the face of poverty, discrimination, and social exclusion – is vibrant and evolving, asserting the right of people with disabilities to live freely and fully realize their human rights. Rather than the AIDS movement extending its reach to “integrate” people with disabilities, people with disabilities are joining the AIDS movement as leaders from whom we have a lot to learn.
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