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HIV & AIDS and Disability National Conference 2003
Regional AIDS Initiative of Southern Africa/VSO

June 12, 2003

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Executive summary - Mathieu Janssen
National Federation of People with Disabilities in Namibia (NFPDN)

‘If we want to recognise the place of disabled people within the HIV & AIDS pandemic, we first have to recognise their basic human right on sexuality and that they do have a sexual life.’

Disabled people are often seen as human beings without a sexual life and therefore not affected by HIV & AIDS. This is one of the major reasons mainstream HIV & AIDS service providers never directed information towards them or even thought of including them into their programmes. Also within the disability movement not a lot of attention went to HIV & AIDS related issues, due to the fact that so many other things are still not in place for them.

In order to place HIV & AIDS and disability on the agenda, the National Federation of People with Disabilities in Namibia (NFPDN) started to think seriously about the issue at the beginning of 2002. At that stage different signals came in that HIV & AIDS should be placed on the agenda of the NFPDN: a rehabilitation officer from the Ministry of Lands, Resettlement and Rehabilitation from the Otjozondjupa region requested help in organising workshops, a social worker from the Kunene region came up with the idea of organising a conference and NNAD started organising workshops for Deaf people.

The NFPDN started to look at a two-way approach: start with a pilot workshop for disabled people in the Otjozondjupa region, in order to get some baseline data on HIV & AIDS and disability and to look at the general knowledge disabled people had on HIV & AIDS. At the same time the conference should be organised to bring together all stakeholders and to discuss issues surrounding HIV & AIDS and disability. In most of these initiatives, Voluntary Service Overseas and Regional AIDS Initiative of Southern Africa (VSORAISA) volunteers were involved or the driving force, so it was logical to seek out VSO-RAISA as a partner.

‘The "S" in AIDS stands for sex!’
The first workshop on HIV & AIDS for disabled people took place in February 2003 in Okakarara and saw 25 people participating, half of them physically disabled, half of them mentally disabled. Within the group of participants the knowledge on HIV & AIDS was very limited, even though every person had heard about it, they didn’t reflect the information on themselves. This was partially due to the low level of education: only 2 people were literate and had a basic knowledge of English and partially due to the attitude that sex and prevention against HIV & AIDS has nothing to do with disabled people. However, all mentally disabled women were accompanied by their children, most of them also mentally disabled, showing clearly that they did involve in sexual activities. Overall the workshop was very challenging, especially because the low level of understanding, which made progress very slow and the attitudes towards sexuality, which made practical exercises on how to apply a condom very difficult. In the end the participants learned about HIV & AIDS prevention and how to apply the knowledge for themselves and the organisers got a good idea on the level of understanding and the pitfalls involving workshops for disabled people.

‘And then the woman was put in a room with a man, because a blind woman will need a child to take care of her’.

This statement by a participant gives a clear indication on the vulnerability of disabled people within the HIV & AIDS pandemic and the cultural attitudes towards disabled people in general.

Seventy-six participants, mainly from Namibia, but also from South Africa and Zimbabwe, explored issues surrounding HIV & AIDS and disability during a conference organised by the NFPDN and VSO-RAISA between 10-12 June 2003. The conference provided an excellent platform to discuss HIV & AIDS and disability for participants from different organisations: the disability sector, civil society, HIV & AIDS service organisations and relevant ministries. After the official opening of the conference by the Right Honourable Prime Minister Theo-Ben Gurirab a variety of speakers on different topics sparked lively discussions.

A general overview on both HIV & AIDS and disability was provided by Ben Katamila of NANASO and Alexander Phiri of SAFOD, putting the situation at hand in a broader perspective. Unfortunately the World Health Organisation and the line ministry on disability issues, the Ministry of Lands, Resettlement and Rehabilitation didn’t address the participants, although they committed themselves beforehand.

Group discussions on different types of disability and HIV & AIDS brought things down to local level and showed clearly the problems encountered, especially related to disability issues. Discrimination in general, leading to lack of access to all services, education and employment were points made to show the lack of involvement of disabled people within the fight against HIV & AIDS. A specific problem, which became very clear, is the lack of access to information, especially for visually impaired people and Deaf or hard-of-hearing people, since they need specific means of communication like Braille and sign language.

Different aspects were explored in further presentations, ranging from the production of HIV & AIDS materials and the in- or exclusion of disabled people within this process, HIV & AIDS and the workplace, minorities in general, gender issues, education and the different organisations of disabled people.

In general this showed that disabled people are left out. However, it also showed the willingness of mainstream organisations to include disabled people within their programmes. A good example is that after complaints of Deaf or hard-of-hearing people, it was decided to release the Mubasen video with subtitles! The discussions highlighted the need to cooperate between different minority groups. Furthermore, it became very obvious that gender inequality is still a major problem within the disability movement, even though women are far more vulnerable in general and within the HIV & AIDS pandemic specifically. Presentations from two schools for children with learning disabilities on how they tackle the issue of HIV & AIDS gave way to heated debates on how the educational system should deal with HIV & AIDS. No consensus was reached on the correct way, however, it was recognised that the educational system can play a major role in HIV & AIDS prevention.

During the discussions on the way forward it became clear that disabled people see HIV & AIDS not as a topic on itself, but as one part of the bigger problem of marginalisation in general. The main recommendations were to establish a taskforce in the NFPDN to work on a programme on HIV & AIDS and disability with a full-time staff member, to network and cooperate with mainstream HIV & AIDS organisations, to establish base-line data on HIV & AIDS and disability and to evaluate the outcome of the conference and see how it was brought forward.

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