INTERVENTIONS AT THE LEVEL OF THE INSTITUTIONAL ORDER

At this level there is a need for both international and national awareness. At a global level, stigma reduction interventions often arise out of the proscriptive Human Rights discourse. In the field of disability, this right-based perspective is mainly guided by the World Action Programme (1982), the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities of 1993 and ICF (2001). The UN Convention on the Rights of Persons with Disabilities, which is currently being drafted, will also become an important instrument. However, referring to Arthur Kleinman, Reidpath and colleagues suggest that this perspective can be seen as “the view from nowhere”, and the limited success possibly arises because the approach is predicted on the universal adoption of a view that fails to take account of the structural forces that drives the stigma in the first instance (Reidpath et al, 2005: 472). Throughout this

74 thesis, these structural forces have been explored as an internal-external dialectic of identification and discussed as important factors when PWDs, out of fear of the stigma related to HIV/AIDS, “choose” strategies of covering and passing. However, the right-based perspective seems to be an important instrument in targeting international decision-makers and in advocating for the inclusion of disability and disability issues in international HIV/AIDS policy and programming standards.

At a national level a lot has been done in Uganda in terms of fighting the HIV/AIDS epidemic. Thus Uganda is definitely the most cited success story in sub-Saharan Africa because of an “open” response and the decline in HIV prevalence. A multi-sectoral approach was adopted in the early 1990s with the establishment of the Uganda AIDS Commission (UAC) to fight the HIV/AIDS epidemic. The aim of UAC is to coordinate all HIV/AIDS activities throughout Uganda. UAC is guided by the Revised National Strategic Framework (NSF) for HIV/AIDS Activities in Uganda 2003/04 – 2005/06, which sets the national priorities of Uganda’s response. It seems important that disabled persons should be mentioned as a vulnerable group, when NSF is going to be revised again. Otherwise it may be difficult to implement issues related to disability in the HIV/AIDS response. According to a representative from UNAIDS in Uganda, PWDs will not be seen as an especially vulnerable target group in neither international nor national programmes, if they are not mentioned in NSF (personal communication).

The National Union of Disabled Persons of Uganda (NUDIPU) has played a major role in placing disability on the agenda in Uganda. Achievements such as five seats for disabled people in the national parliament and representation with more than 50.000 councillors in the local government system in the 56 District Unions should be mentioned (Ndeezi 2004: 25). Thus NUDIPU has a great network to draw on.

However, it should also be noted that the Ugandan disability movement itself (NUDIPU and others) has been slow to react to the link between disability and HIV/AIDS. HIV/AIDS seems to be a rather new concern among disabled people’s organisations (DPOs). According to my key-informant at TASO, who was also a former board member of NUDIPU, it was in 2001 that NUDIPU realised that PWDs were left out of HIV/AIDS policies and programmes in Uganda (as elsewhere).

75 NUDIPU contacted HIV/AIDS service providers in Uganda; however, it was mainly TASO which recognized the problem and wanted to mainstream PWDs in their program. The Aids Information Centre (AIC) was also interested, but as an informant there told me: “We will treat PWDs well if they come to our clinics, but we cannot go out there and “catch” them.”

As mentioned earlier, I was surprised that none of the DPOs I spoke to had workplace policies concerning HIV/AIDS. Also within these organizations I experienced fear of losing one’s job, if disclosing one’s serum-status. This could point to the fact that even within those organizations there is some kind of self-regulated behaviour related to fear of social exclusion. It seems rather important openly to recognise issues related to HIV/AIDS within these organizations, since they ought to act as pioneers in integrating persons infected by HIV/AIDS, and advocate for the inclusion of PWDs in HIV/AIDS policies and programmes. Rather important, DPOs also have to address HIV/AIDS internal among their own members. However, it should be stated that NUDIPU in partnership with other DPOs is coming up with a program funded by DANIDA¹², whose aim is to reduce disabled people’s vulnerability to HIV infection and to reduce mortality caused by HIV/AIDS among the disabled population in Uganda. This program will be interesting to follow.

Furthermore, both NUDIPU and TASO are partners in The African Campaign on Disability and HIV & AIDS.¹³ This is a unifying umbrella under which DPOs, Organizations of people living with HIV/AIDS, NGOs, HIV/AIDS Service Organizations, researchers and activists work collectively to achieve equal access for PWDs in Africa to information and service on HIV/AIDS, and to achieve a coordinated response involving PWDs in African Countries to achieve inclusive national HIV/AIDS policies and programmes. The Campaign is led by the Secretariat of the African Decade for Disabled Persons (1999-2009) and Handicap International. This campaign seems to approach all levels when addressing disability issues. This leads me to examine the perspectives of the interaction order.

12 Danish International Development Agency

13 www.africacampaign.org

76 6.4 INTERVENTIONS AT THE LEVEL OF THE INTERACTION ORDER

Above it was discussed how the Human Rights discourse can be an important instrument at policy level. In this section I will discuss two other types of stigma reduction interventions, namely the Information, Education and Communication campaign (IEC) and Knowledge, Attitudes and Practices approach (KAP). They can be seen as identical strategies with different names.

IEC and KAP campaigns have been developed as a means of reducing the level of stigma in diverse areas of health related stigma. These are conservative interventions, however, underpinned by the view that those who stigmatize have the capacity to behave differently, and that knowledge is all that stands in the way of behaviour change. They have shown themselves to be unsatisfactory, particularly at a population level, because the socio-cultural forces that give rise to the stigma are slow to subside even in the presence of knowledge (Reidpath et al, 2005: 471). However, these campaigns do have their place and can be an important part of correcting misconceptions in the community about people’s social value. Misconceptions such as thinking that PWDs are not sexually active or at risk of contracting HIV/AIDS need to be focused on. Moreover, these campaigns seem to have their place in mainstreaming disability issues into existing HIV/AIDS programmes or in the developing of disability specific interventions. However, one should be careful not to point at PWDs as a special “risk group”, which in fact could increase stigma. Instead it would be better to integrate PWDs in ongoing approaches, by for example having a disabled actor in drama groups¹⁴ or placing a person in a wheelchair among non-disabled persons on a poster. In this way PWDs would be seen as naturally “at risk”, it would be an attempt to mainstream. Guidelines for Inclusion of Individuals with Disability in HIV/AIDS Outreach Efforts have been developed by Groce and colleagues (Groce et al, 2006).

They suggest different types of approaches, which will be presented below in short:

14 Drama groups are a popular approach educating the community about HIV/AIDS.

77 Type 1: (No or Low Cost Modification to Existing Programs)

These interventions need little more than awareness of disability issues by HIV/AIDS advocates and outreach workers. An invitation to join a training session or a change of venue so that persons with physical impairments can join may cost nothing. It may just be a matter of moving a session outdoors under a three. Many effective actions can be taken immediately by HIV/AIDS advocates and health workers if they are made aware of the fact that PWDs are at risk (which the health workers in my study did know).

However, they have to remember to include PWDs in their outreach efforts and think of their special needs. Groce and colleagues give some examples of how a HIV/AIDS educator was holding up a condom packet in front of group of visually impaired persons, and they were far too embarrassed to ask the educator to allow them to touch the condom so that they could understand what it was or how it was to be used.

Awareness of the special needs of PWDs could easily be a topic in the training of HIV/AIDS health workers.

Type 2 (Low to Moderate Cost to modify or Add to Existing Programs)

These interventions will require minor to moderate amounts of planning and resource allocation. Visually impaired people are often cited as a particular challenge. Putting HIV/AIDS outreach materials into Braille would be an optimum, but an expensive solution. However, while many educated visually impaired people read Braille, in fact, 90% of all individuals with visual impairments do not read Braille or are not literate.

An inexpensive alternative may be tapes or CDs with HIV/AIDS information in local languages. Many - but of course not all – individuals with visual impairments have some access to tape recorders or CD players or live in families or neighbourhoods where these are available. A similar low-cost technology can be used to reach some portion of the hard of hearing population through sign language interpretation. A simple televised image of a sign language interpreter in the corner of a screen can be easily added when a commercial or program on HIV/AIDS is played. However, not all individuals hard of hearing live in areas where television is available, and not all know the official sign language.

78 Type 3 (Moderate to Higher Cost Disability-Specific Programs)

One type of intervention Groce and colleagues mention here is the targeting of individuals hard of hearing. Their need for presentations about HIV/AIDS in local sign language seems important. It is only in this language that deaf individuals would be able to understand, ask questions and receive answers about HIV/AIDS that they are able to use in their daily lives. However, as we saw in the case of TASO, training health workers in sign language may not be a solution, since they have problems maintaining their skills and since not that many clients know the official sign language.

It may be more effective to engage sign language interpreters when needed. One could imagine that for example the Uganda National Association of the Deaf (UNAD) could create some kind of interpreter-service?

These guidelines for inclusion of PWDs in HIV/AIDS outreach efforts leave the impression that simple solutions exist to make HIV/AIDS organizations aware of the vulnerability of disabled persons and to include them readily in care and outreach programs. It is a more complex matter, however, to approach the stigma “felt” by PWDs and the stigma “enacted” by the rest of the community and/or the wider society.

This will be discussed next.