We at AIDS-Free World would like to bring to light the need for a comprehensive and sustainable response to the needs of persons with disabilities by the international AIDS community. There are excellent, creative innovations taking place on the ground but we need a coordinated global response to support these initiatives and allow them to grow.

We applaud that for the first time this international AIDS conference has included disability issues into its formal program. But, we have yet to see the coordinated integration of persons with disabilities (PWD) and disability issues into UNAIDS, the IAS and other high level international structures.

First of all, let me take a moment to briefly outline some of the particular concerns of women with disabilities in the face of HIV/AIDS.

We are being excluded from HIV/AIDS education initiatives and clinical services. There are widespread ideas that, somehow, because we have a disability we don’t fall in love, that we can’t find partners and that there is no way that we would have sex. Needless to say, these are erroneous misperceptions. Not only are women with disabilities sexually active we are also often at a much higher risk of sexual abuse from caregivers, partners and strangers who may see us as defenseless. Even if such abuse is reported, most often the reports are not taken seriously. Worse still, there’s the idea that we should just be grateful for whatever sex we can get. I think you can see how these issues closely intertwine with HIV/AIDS risk factors.

Gender inequality is not only driving the feminization of the AIDS pandemic but also leaving women and girls with disabilities more vulnerable to and more affected by physical and mental disabilities. Women and girls currently comprise 74% of PWDs in low and middle income countries yet they only receive 20% of rehabilitation assistance worldwide. The UN reports that “the combination of male preference in many countries and the universal devaluation of disability can be deadly for disabled females.”

Women with disabilities are less likely to be educated and employed than their male counterparts and are less likely to access and receive medical care. Disabled women’s exclusion from healthcare services is rampant worldwide and is not only a question of having wheelchair ramps and Braille. Perhaps the most painful discrimination come in the form of prejudices held by health care workers.

Imagine for a moment that I am a pregnant and going to access prenatal services at my local health care clinic for the first time. I have a loving and caring partner and we are both overjoyed with the pregnancy but when I reach the clinic I am only met with disdain and pity from the nursing staff. “Shame!” they say… “Sorry!” “She’s disabled herself and now this…how will she manage?” they whisper…or even worse… “to think that someone should do this to her in her condition?”… With these degrading attitudes we begin to see how easy it is for a young disabled woman to loose confidence in her local health care providers and to be discouraged from returning.

But I digress. There are many challenges we face but there are also numerous examples of exciting programmes sprouting up that bring together people with disabilities and AIDS activists and service providers to combat stigma and make services more accessible to all.

Let me share with you three examples of initiatives currently being implemented in East Africa where I have spent the bulk of my time this year, with my AIDS-Free World colleague, Shonali Shome. These examples illustrate the creativity and the vast potential of partnerships between AIDS service organizations and groups of persons with disabilities.

My first example comes from Gulu District in Northern Uganda. The violent conflict and subsequent displacement that has ravaged Gulu and surrounding districts for the past 20 years corresponds with increased rates of physical impairments as well as higher HIV infection rates. Within this context, a small and courageous group of women with disabilities who are all HIV positive came together following an AIDS and disability media awareness campaign in 2007 sponsored by the National Union of Persons with Disabilities of Uganda. Actually, this event was coordinated by our chairperson today, Mr. Martin Babu. In any case, after attending the event, a handful of women with different disabilities gathered the courage to openly disclose their HIV positive status. In less than two years, the group now has over 45 members. Although the group has yet to receive funding, its members support each other and gather to discuss drug side effects, challenges as home and even to counsel each others family members.

My second example takes us to the urban slum area of Kamwokya in Uganda’s capital city, Kampala. This is the home of an impressive Mental Health Clinic and community mental health program that were launched in October, 2004, by Kamwokya Christian Caring Communities (KCCC). A faith based organization with more than 20 years of experiences providing the Kamwokya community with accessible HIV/AIDS testing, treatment and care services.

People with mental health and psychiatric conditions and developmental disabilities continue to be grossly neglected both by the AIDS sector and the disability movement. KCCC’s inclusion of mental health under the umbrella of all their programs is a model can be replicated by other organizations. This structure allows patients to benefit from a range of services available in other KCCC programs, such as educational support for at-risk youth and support for income generating initiatives.  It makes it easier to refer patients to other services, and easier for patients to access all the services they need in one place. The Mental Health clinic is now well-known and has become an entry point for some patients to then access other KCCC services – 219 cases have now been referred from the mental health clinic to the main clinic providing HIV/AIDS services. 

My third and final example is the Disability Programme at Liverpool VCT, Care and Treatment in Kenya. Their project coordinator, Washington Opiyo, is in the audience today and he will also be presenting at a skills building workshop tomorrow afternoon and our AIDS-Free World and Disabled Peoples’ International satellite session that will be held tomorrow evening at 6:30pm in Session Room 5.

Liverpool’s Disability Programme is currently run entirely by Deaf counseling and administrative staff it runs mobile stand alone clinics in Nairobi, Mombasa and Kisumu. The comprehensive nature of its initiatives and the way they are embedded into Liverpool’s mainstream structure makes it an exemplary program. Deaf project staff are well integrated into the established, comprehensive structures of Liverpool’s main VCT, Care and Treatment services, and the mainstream staff’s exposure to the Disability programming helps to combat stigma at a systemic level. The Disability Programme does not discriminate against hearing people – hearing clients attending the clinic work through an interpreter, inverting the norm of having Deaf clients always be the ones needing to rely on an interpreter.  This also contributes to dismantling the widespread ignorance and misunderstanding of the Deaf community.  The integrated nature of the Liverpool Disability Programme supports people with disabilities as they tackle HIV/AIDS issues and helps to reduce stigma both amongst health care workers and the broader community.

Liverpool Disability Programme encourages the replication of its model internationally, and staff are willing to share their experiences with other service providers and disabled people’s organizations trying to bridge the gap between VCT services and the Deaf and people with disabilities.  The success of such initiatives and exchanges are, however, largely dependent on international support both in terms of policy and finances.

So this takes us back to my original call for an integrated global response to the needs of people with disabilities in the face of the AIDS pandemic and this response must be one that stays true to the disability movement’s call of “Nothing About Us Without Us.”

I am grateful for you’re your attention this afternoon and before I step off the podium I will leave you a few recommendations for including people with disabilities into your programmes as we build a global response.

If you are an implementer at a community or national level,

• Partner with disabled peoples’ organizations to ensure that the perspective of people with disabilities is included in all aspects of programming.

If you are a funder,

• Make consideration of disability issues a required condition for all proposals you solicit.

If you are in government,

• Ratify the Convention of the Rights of Persons with Disabilities and the Optional Protocol and ensure that national legislation addresses the rights of people with disabilities and incorporates the principles of the Convention.

If you work for the UN,

• Include disability as a “vulnerable group” in annual reports and monitor the ongoing challenges people with disabilities face in accessing HIV/AIDS prevention and treatment.

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