Speaking Up

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Fri Dec 3, 2010

People with Disabilities Must Be Part of an Equitable AIDS Response

By Myroslava Tataryn and Winstone Zulu

On World AIDS Day this week, the world was reminded of the urgent need for Universal Access to Treatment, Prevention, Care and Support for people living with HIV/AIDS.  But there is a global population that continues to be overlooked in HIV/AIDS strategy: people with disabilities.  We are not mentioned in the Millennium Development Goals (MDGs) or, incredibly enough, in the annual UNAIDS Report on the state of the pandemic.  The world fails to realize that we will never achieve the global public health targets if we continue to exclude people with disabilities, and neglect disability rights.

We, people with disabilities, are everywhere.  We are mothers, soldiers, sex workers, and drug users.  We are doctors, nurses, janitors, and taxi drivers.  We live everywhere, from Canada to Cambodia, in slums, hospitals, and bungalows.  We live and die at the heart of the AIDS pandemic.

Leaders have decried the unspeakable carnage and destruction the AIDS pandemic ravages across Southern Africa, mindful of the double standard that divides the global response to the pandemic: the difference in standards of prevention and treatment between Africa and the West. HIV/AIDS reveals the ugly reality of our divided and unequal world.  It forces us to grapple with our global system that values African lives less than those of North Americans.  We are challenged to face the insidious ways that AIDS operates, preying on the most marginalized and dispossessed in society.

Yet, more than two decades into our response to the pandemic, people with disabilities are continuously silenced and overlooked despite relentless infections and deaths.  The response to HIV/AIDS further marginalizes people with disabilities in subtle ways, such as voluntary testing and counseling clinics with steep staircases that prohibit people with mobility disabilities from entering.  Tellingly, we cannot even assess the extent to which persons with disabilities are overlooked because we are not deemed important enough to be counted.  Better left locked up in the house.  Our lives are not deemed worthy to live; in Africa, better dead than disabled.

But this is not just an African issue.  In North America, as people with disabilities, we are forced to fight day and night for our right to life — our right not to be sterilized against our will, or institutionalized — and as HIV/AIDS continues to ravage our world, people with disabilities are not even counted as persons worthy of relationships, as sexual beings, and therefore needing access to care and information, like everyone else.

How often have we been exposed to images of disabled people showing physical affection?  Does this elicit the same romantic images, or are reactions in mainstream society more akin to disgust and offense?  In Canada, there are numerous accounts of children with disabilities taken out of classrooms during sexual health presentations in the belief that such information is unnecessary for them as they stand no chance of finding sexual partners.  On the one hand, people with disabilities — particularly women — are seen as unable to obtain fulfilling long-term relationships; more on the other hand, they are targets for rape because of their supposed weakness and helplessness.

Rape, whether in civil conflict or domestic violence, increases the chance of HIV infection by twofold. Disabled people, who are the frequent victims of rape, thus have incredibly high rates of infection.

Disabled women in Zambia and Canada alike, recount harrowing experiences, that are alarming in their violence and their similarities despite geographical difference.  Common experiences such as a partner arriving at a disabled women’s home at night for sex but never admitting the relationship in the day or taking responsibility for his children; a woman wheeling into a health center seeking an HIV test but being turned away by other clients chastising her for being sexually active; a blind women raped and unable to file any claim with police because she is unable to describe the appearance of the aggressor and being told that she should be grateful for getting any sexual attention at all.

As advocates working in the field, we are exhausted by these stories.  How many times do we need to repeat them before we get the attention and the funding necessary to compile the statistics policy makers are so desperate for?  The climate of fiscal austerity is only further worsening the plight of people with disabilities domestically and globally.  Disability rights are seen as non-essentials; rights we will only have the luxury of addressing when everything else is in order.  Yet it is clear that we will not achieve women’s rights if we do not recognize the rights of disabled women.  We will not have universal primary education if disabled children are not accepted into schools.  Universal access to HIV treatment will not be achieved if disabled people do not have access to treatment.  And fundamentally, we will never be a society capable of understanding equality and community until it is recognized that people with disabilities are people.

There are 650 million of us — fully ten percent of the world’s population.  Today is the International Day of People With Disabilities.  Ours is an issue whose time has come.