Equalise it: The visually impaired and HIV/AIDS programmes

‘I attended a training session in my home area but I did not enjoy it because they used a video which I didn’t understand because nobody explained what was going on; they also gave me a print booklet to read. But after I attended the training by Rahab, I understood much better because I touched a condom and learned how to use it. Things were explained to me much better.’

These are comments by Jean Pierre, an 18 year-old high school student in Rwanda. He was among the beneficiaries of the community training activities organised by the Rwanda Union of the Blind. This training was conducted by blind and partially sighted HIV/AIDS Peer Educators, Rahab being one of them.

‘I am a teacher and have had the opportunity to make presentations to several groups including a pan disability group. I continue to be approached with questions and have made several presentations to sighted groups within the community. This is continuing following one year from the original training in February 2006.’

These comments were made by John, a partially sighted HIV/AIDS Peer Educator from Kenya.

‘I think that visually impaired persons who are also living with HIV should be encouraged to form support groups of their own. This will create an ideal forum for other visually impaired persons out there to open up about their status. In the end it will be easy for us to penetrate mainstream support groups. There are many blind people out there who could be infected and do not even know it.’

This view was shared by a female participant during HIV/AIDS Peer Educator’s workshop for blind and partially sighted persons in Lesotho. This participant is also living positively with HIV and is a leader of the support group in her home area.

‘I once went to be tested for HIV at the clinic. The female counsellor I met there asked if I knew how to perform sex. I answered in amazement, would you like me to show you how it’s done?’

This was the experience of Jacque Mogisho, a young person from Rwanda. He was sharing his own experience of how negative attitudes and misconceptions from service providers make visually impaired persons shun these services altogether. This was during the training workshop for young visually impaired persons in Uganda.

‘I am now empowered, a different person. I now have useful knowledge to share with my community and sighted people are approaching me with questions. I feel my status in the community has risen and I am one of them even though I am blind, and my skin is a different colour (albino). This has given me confidence to go further in sharing information and joining groups. Prior to having training and playing an active role in the community, I was reserved and did not feel I had the ability to speak in front of people… Life is difficult. You have no idea how my self worth has grown. I am motivated to continue with training and work in my community to spread the news and use my new information to help others and maybe find a job in counselling!’

These comments were made by Monica, a female HIV/AIDS Peer Educator after participating in the Peer Educators’ training in Kenya.

These are some of the experiences from blind and partially sighted participants from different countries about how HIV/AIDS programmes can address their needs. There are so many programmes addressing HIV/AIDS prevention and control, yet many disabled people are deliberately left out in these interventions.

Recently, given this state of affairs disability and HIV/AIDS issues have been discussed widely. Disabled persons have begun to address HIV/AIDS issues among themselves. At African Union of the Blind (AFUB) we have endeavoured to address issues of blind and partially sighted persons in relation to HIV/AIDS. AFUB is a continental umbrella organisation of 54 associations of and for blind and partially sighted persons in Africa spread in 50 countries. In a period of three years (2006–2008) we have conducted HIV/AIDS Peer Education training workshops in ten countries by training members of national organisations of the visually impaired in those countries to become HIV/AIDS Peer Educators. The countries are: Cameroon – Assocition Nationale des Aveugles du Cameroun (ANAC); Ghana – Ghana Association of the Blind (GAB); Kenya – Kenya Union of the Blind (KUB); Malawi – Malawi Union of the Blind (MUB); Rwanda – Rwanda Union of the Blind (RUB); Tanzania – Tanzania League of the Blind (TLB); Lesotho – Lesotho National League of the Visually Impaired Persons (LNLVIP); South Africa – South Africa National Council for the Blind (SANCB); Ethiopia – Ethiopia National Association of the Blind (ENAB); and Zambia – Zambia National Federation of the Blind (ZANFOB).

The aim of these workshops is to empower visually impaired participants and equip them with HIV/AIDS Peer Education skills so that they can go to their home areas and impart the same knowledge of HIV/AIDS to other visually impaired persons. In addition to increasing their knowledge on HIV/AIDS, participants also discuss and prescribe ways on how HIV programmes and services can be made accessible for blind and partially sighted persons. One other way of sensitising mainstream service providers on how they can adapt their programs to make them accessible to blind and partially sighted persons is through involvement. During these Peer Educators’ workshops, facilitators and trainers from mainstream HIV organisations such as voluntary HIV counselling and testing (VCT) service providers and networks of people living positively with HIV were invited to conduct some training sessions.

During this whole process there are certain key lessons that we have learned:
- Involving mainstream AIDS service organisations and service providers in the training activities: The development of manuals and HIV resources makes it easier to communicate to them about the needs of blind and partially sighted persons are in as far as HIV/AIDS programmes and services are concerned.
- Continuous and systematic data collection and record keeping on the experiences of blind women and men regarding HIV/AIDS is important as it assists in implementing evidence-based HIV programmes.
- HIV/AIDS conferences and seminars have also offered ideal opportunities for presenting issues of blind persons as far as HIV/AIDS is concerned.
- Participating in the Africa Campaign on Disability and HIV/AIDS has helped to bring the voices of many blind women and men in the continent to the fore.
- To uphold greater involvement of people living with HIV/AIDS. Presenting samples of HIV resource materials in accessible formats to mainstream AIDS organisations plays a huge role in sensitising them about how they can adapt their programmes so as to make them accessible to blind persons.

See also the AFUB Annual Report.

* Elly Macha is with the African Union of the Blind.
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