Pushing Frontiers: Including the Disabled in Service Provision

By Washington Opiyo and Myroslava Tataryn
June 1, 2009

People with disabilities (PWDs) are often excluded from HIV and AIDS education and care initiatives, partly due to the widespread perception that they are asexual.  In reality they are just as sexually active as their non-disabled peers.  At the same time, however, they are also often at much higher risk of sexual abuse from caregivers, partners and strangers who may see them as defenseless.  Even where such abuse is reported, law enforcement officers and others in positions of authority tend to take it lightly.

Gender inequality is a big issue regarding people with disabilities and HIV and AIDS.  Not only is it driving the feminization of the AIDS pandemic, but it is also leaving disabled women and girls more vulnerable to and more affected by physical and mental disabilities.  Women and girls currently comprise 74 per cent of PWDs in low and middle-income countries yet they only receive 20 per cent of rehabilitation assistance worldwide.  The United Nations reports that “the combination of male preference in many countries and the universal devaluation of disability can be deadly for disabled females.”

Despite the dire situation, there are innovative initiatives taking place on a local scale in Kenya and East Africa to address the impact of HIV and AIDS on people with disabilities.  The Disability Programme at Liverpool VCT, Care and Treatment began with the provision of HIV services to deaf people through VCT centers in Kisumu, Mombasa and Nairobi in Kenya.  At its inception as a program for the deaf in 2003, it was the first major AIDS- related intervention for the hearing-impaired community in Kenya, and remains the only program of its kind in Africa.  It is run entirely by deaf counseling and administrative staff.

The key objectives of the program are to raise awareness of HIV and AIDS among the deaf and people with disabilities, increase their access to VCT, care and treatment services and represent their needs at local, national and international policy conferences and fora.

The HIV services provided to the deaf and disabled people by deaf counselors and peer educators meet the requirements of the national VCT quality assurance guidelines, which include measures to assess, monitor and improve the quality of both counseling and testing components of HIV testing and counseling (HTC) services.

The Liverpool way: breaking new ground

The program has provided confidential HIV testing and counseling to 12,000 clients with disabilities through its stand-alone clinics, as well as 200 mobile VCT service outreaches for people with disabilities between 2003 and 2008.  The program has also printed 500 copies of its manual, Signs for Sexuality and Reproductive Health, and trained 45 health care providers in Kenyan sign language.

The comprehensive nature of the initiatives of Liverpool Disability Programme and the way they are embedded in Liverpool’s mainstream structure makes it a unique program.  Deaf project staff members are well integrated into the established, comprehensive structures of Liverpool’s main VCT, Care and Treatment program, and the mainstream staff’s exposure to the Disability Programme helps to combat stigma at a systemic level.  The disability program does not discriminate against hearing people, since hearing clients attending the clinic work through an interpreter, inverting the norm of having deaf clients always needing to rely on an interpreter.  This also contributes to dismantling the widespread ignorance and misunderstanding regarding the deaf community.  The integrated nature of the Liverpool program supports the deaf community and people with disabilities as they tackle HIV and AIDS issues and helps to reduce stigma both amongst health care workers and the broader community.

Recognizing the specific challenges faced by women with various disabilities, the program is also now addressing the issue of gender-based violence (GBV) within the deaf and disabled communities by providing support and referrals for survivors of GBV at their clinics. Gender-based violence within the deaf and disability communities generally has not been widely addressed and by taking it on, Liverpool VCT is, once again, breaking new ground.

Program challenges

Over the last five years, the Liverpool Disability Program has demonstrated that deaf-to-deaf services are effective, efficient and sustainable.  Yet there are challenges.  The 2007 Kenya National Survey for People with Disability revealed that the majority of people with disabilities live in rural areas, yet most VCT sites are located in urban areas.  Reaching these rural communities requires more financial and technical support, time and creativity.  Liverpool program is trying to address this challenge through the expansion of their mobile outreach services, but is constrained by a lack of finance.  The success of such initiatives and exchanges is, however, largely dependent on international support both in terms of policy and finances.  The program also still struggles to get mainstream AIDS service providers to deliver non-stigmatizing, affirming and quality HIV services for all people with disabilities.