Everywhere you go in South Africa there are posters on HIV and AIDS. The people behind these posters go to great pains to include people who are white and black, people who are urban and rural, young and old - to catch the attention of people in a multicultural society. But I bet that you have never seen anyone with a disability included in any of these posters. Why is this? We know that it is not because HIV does not concern them. “Individuals with disability are at equal to significantly greater risk for all HIV/AIDS risk factors”, it has been concluded in a global survey by the World Bank and Yale University. “Clearly AIDS among disabled and non-disabled persons is of the same type, so there is not reason not to address us”, says Yetnebersh Nigussie from Ethiopia. 

Because AIDS organisations and governments’ HIV responses are not reaching out to persons with disabilities, disability organisations are taking matters into their own hands. In several African countries like Botswana, Ethiopia, Kenya, Rwanda, South Africa and Uganda they have come a long way in establishing their own HIV programs that include training workshops and development of information in formats accessible to blind and deaf persons.

These initiatives are needed because they fill a gap in the official approach to HIV in Africa. “Disabled persons’ organisations run their own programs because their members are becoming HIV positive, some are living with AIDS and some have died. Their members are ignorant of prevention measures and not reached by national education and control programs”, Yetnebersh Nigussie says. But disability organisations are really doing what governments should be doing. It is not the responsibility of disability groups to take care of HIV information, training and other HIV prevention efforts for persons with disabilities.      

The African Union of the Blind (AFUB) has developed HIV training and resource materials that address the needs of blind and partially sighted persons, and adapted these into accessible formats for visually impaired persons, i.e. Braille, large print and audio. So far they have trained 1,500 visually impaired persons in their regions on HIV & AIDS and related issues such as counseling and testing and where to get this service, HIV/AIDS management and Anti-retroviral Therapy, sexually transmitted infections and home-based care.   

Catherine Mwayonga is a 53 year old Kenyan mother of six and a primary school teacher. She is blind. And she is HIV positive. She works as a trainer with AFUB. She says that she talks about her status, because she believes it is the only way to change people’s attitudes. “The virus does not discriminate - but people and services most certainly do”, she tells me.

The Lesotho Society of Mentally Handicapped Persons, which consists of 12 parent organisations from Southern and Eastern Africa, has HIV and AIDS training as their main activity. In Uganda, the disability movement has formed a committee that brings all disability organisations together to work collectively on HIV. The national association of women with disabilities in Ethiopia run their own HIV program with awareness raising, training, counselling and research. A network of organisations similar to the Ugandan committee is being built in Ethiopia now. These are only but a few examples of a new wave of grassroots initiatives on disability and HIV.

But these are often small ad-hoc efforts with very limited resources, and in many countries the link between disability and HIV has not been made visible at all. In January a continental approach was launched that aims to learn from the existing activities and bring together disability organisations, AIDS organisations, governments and other development and funding agencies to work together to improve the situation. The initiative is led by the Secretariat of the African Decade of Persons with Disabilities in collaboration with Handicap International. It is called the Africa Campaign on Disability and HIV & AIDS.

So why have large AIDS organisations and governments not included persons with disabilities in their programs? We who work with disability have noticed that the most common reason is that “we have never thought about it”. So we keep informing them. We have had meetings this month with two regional directors of UNAIDS. They admit that UNAIDS have not dealt with disability issues, but now they are keen to work with us to change this.

Another response to the question why individuals who are blind or deaf have not been catered for, is that “we do not know how to”, assuming that it will be complicated and expensive. There will a need for some disability specific efforts, but more often it only takes minor adaptations to have people with disabilities included. Now, there are guidelines and tool kits developed by Yale University and by national organisations, ready to use by anyone who wants to learn. The Secretariat of the African Decade of Persons with Disabilities has been advising the HIV strategy process in South Africa – and now, for the first time, persons with disabilities are included in the action plan for the coming years. In every country and region on the continent, there are disability organisations that are willing and able to provide expert advice.

A third reason stated for not including persons with disabilities in HIV outreach efforts is lack of funds. “Health and welfare of all people is the mandate of governments. However, the fact that most governments in developing countries have too little resources and depend on donors means that there is never enough for us”, Martin Babu from Uganda tells me. He is critical of governments who see disability as “an extra”, not incorporated in the “normal” budget, as if people who use wheelchairs or white canes are not real citizens.

Disability groups are starting to demand their piece of the funding cake. “10% of existing funding for national HIV programs should go to persons with disabilities, because at least 10% of any country’s population has a disability“, I was told in a recent group discussion. It is not unreasonable.   

All of the problem areas faced by individuals with different disabilities in the face of HIV in Africa are covered in the new human rights convention that has recently been adopted at the United Nations. The convention will be open for ratification in the end of March, and it addresses matters such as access to information and services, equality and non-discrimination, right to life, freedom from violence and abuse, inclusion in communities, education, social protection and health. “African governments must ratify it, and then look at their own HIV strategies in the light of the convention”, Martin Babu says. What disability organisations are doing is important, but it will never be enough. A few African governments have started to mention disability when they talk about HIV, but they need to do more.  

When the AIDS epidemic first started years ago, it was framed mainly as a men’s disease, and especially a gay men’s disease in North America and Europe. It was only several years into the epidemic that people woke up and said that women are also at risk. Then they had to bring women into the whole AIDS discourse. In the same way as we have brought women in, disability can follow. Excluding people with disabilities is an unacceptable human rights-inequality. And it seriously hinders the overall fight against the spread of the disease. If they are not included, efforts to slow the spread of the virus will be unsuccessful. There are around 80 million individuals with disabilities in Africa. This is simply too large a proportion of the population not to be included.

By Lina Lindblom