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HIV/AIDS and Disability: Capturing Hidden Voices

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As the global community marks World AIDS Day this week, and watches with alarm as the disease marches on defiantly in East and South Asia, in Eastern Europe, and Africa, a key group is being largely overlooked in efforts to stop the spread of HIV/AIDS - the more than 400 million people who live with a physical, sensory, intellectual, or mental health disability in the developing world.
Judith Heumann 
Judith Heumann, World Bank Advisor
for Disability and Development

Vulnerability to HIV/AIDS on the part of disabled people will be widely discussed at the upcoming second international disability and development conference to be held at the Bank, entitled "Disability and Inclusive Development: Sharing, Learning and Building Alliances," November 30--December 1, 2004. Organized by Judy Heumann, the World Bank Group's Adviser on Disability and Development, and her colleagues in HD's Social Protection team, this meeting follows up on the Bank's December 2002 international conference, and will take stock of the work done in the disability and development community over the past two years.

The discussion on HIV and disability will be guided by HIV/AIDS and Disability: Capturing Hidden Voices - a research paper, prepared by the Bank's Global HIV/AIDS Program, in collaboration with Judy Heumann, and the Yale School of Public Health, which is based on survey responses from 57 countries. Heumann says the linkage between HIV/AIDS and its risk factors for disabled people is especially important to consider on the occasion of both World AIDS Day as well as this year's International Day of Disabled Persons.

Judy Heumann wants the second international conference to amplify the voices of disabled people which she worries are not heard in global and regional efforts to promote fair and lasting development. Because people with disabilities are among some of the most marginalized in the world today, she especially worries that the implications of HIV infection for them has been largely ignored. Every major risk factor linked to HIV infection is also present in disabled populations.

Heumann says that disabled people are significantly more likely than their non-disabled peers to live in poverty, to be illiterate and to be unemployed. Heavily stigmatized, they are often barred from taking part in the social, legal, religious and political affairs of their communities. Too often, disabled people are also incorrectly assumed to be sexually inactive, unlikely to use intravenous drugs and alcohol and at little risk for abuse or violence.

 Debrework Zewdie

Debrework Zewdie, Global HIV/AIDS
Program Director

"Some people think that people living with disabilities are not sexually active, but they're as active as everyone else," she says. Another problem, she says, is that abuse against disabled women is quite high and so it's common that they have multiple sex partners and are acquiring AIDS."

Judy Heumann joined forces with two powerful allies to undertake the research paper, HIV/AIDS and Disability: Capturing Hidden Voices - Professor Nora Groce of the Yale School of Public Health, a longtime advocate for disabled people, and Debrework Zewdie, Director of the World Bank's Global HIV/AIDS Program. Based on hundreds of responses from 57 countries, the paper offers a number of striking conclusions:

  • HIV/AIDS is a significant and almost wholly unrecognized problem among disabled populations worldwide;
  • While all individuals with disability are at risk for HIV infection, subgroups within the disabled population – most notably women with disability, disabled members of ethnic and minority communities, disabled adolescents and disabled individuals who live in institutions, are at especially increased risk; and
  • HIV/AIDS educational, testing and clinical programs are largely inaccessible to individuals with disability.

According to Judy Heumann, these findings from the Yale/World Bank study strongly argue that disabled people can – and should - be included in all HIV/AIDS outreach and service efforts. Much of this work can be done at little or no additional expense; other programs need only slight modification to be made significantly more inclusive. Disability-specific measures will also be needed to reach some subgroups within the larger disabled population. These can be justified from the perspective of both development economics and human rights.

A three-stage intervention model is proposed to ensure that individuals with disability are reached by HIV/AIDS outreach efforts. The need for expanded research, and increased educational and clinical outreach is strongly urged.

 AIDS Ribbon Outside World Bank Building
HIV/AIDS ribbon outside the World Bank Building

Overlooking the threat of HIV/AIDS to disabled populations is one of the most dramatic forms of exclusion they face, there is the larger situation that disabled people are largely invisible in their communities, and are largely overlooked in efforts by the global development community to improve the human welfare and living standards of millions of the world's poor people. Judy Heumann says it's important for policymakers and development practitioners alike to realize that, with roughly 10 percent of the world's population living with one form of disability or another, disability components must be built into all development projects.

"From an economic perspective, we look at the fact that most disabled children don't attend school," says Heumann, "and as this population becomes older and cannot get jobs because they have no education, it means that families have to take care of people who could be contributing to society." She says the disabled thus become an economic drain on their communities simply because they were denied the opportunity to contribute.

Heumann notes that the Bank has historically focused on preventing disability, which is quite important, "but humankind will continue to make people become disabled, whether it's with them losing their limbs or being blown up with bombs." She says the Bank has to be able to help governments remove the stigma that is attached to disability. "People need to know that disability is not a curse or punishment for some past wrong, as many in some of the countries we deal with seem to believe."

She says that the Bank did not have very good data on disabilities when she first came on board, and data from developing countries was mostly guesswork. "But in developing countries we are looking at a population of 15 – 20 percent who have different types of disability," she said.

There have been encouraging signs of progress of late. In Brazil, which is one of the first developing countries to improve its collection of disability data, surveys showed that large numbers of children with significant visual disabilities simply needed spectacles. The World Bank has been closely involved in these efforts, both in terms of providing glasses, hearing aids, and other interventions, but also in gathering better statistics on people's disabilities and their consequences

In addition to the linkage between disability and HIV/AIDS, another of Heumann's top priorities has been education, specifically what has come to be known as Inclusive Education. "Inclusive education is where you're bringing disabled children to the same schools as non-disabled children, but keeping the cost of educating these children at a level that's feasible for the governments to be able to participate in," says Heumann. "The education sector recognizes that with the number of disabled children not going to school, we'll not be able to achieve the Millennium Development Goal of education if we don't address this issue."

To learn more about the Conference, visit
2004 World Bank International Disability Conference


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