Much in Common, Much to Learn from the Disability Rights Movement

By Shonali Shome
May 16, 2008

Kampala, Uganda: In the stories of people with disabilities, Shonali Shome hears familiar strains and crucial lessons for AIDS activists.

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 the 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.