In part six of our series on disability policies, done in partnership with the National Union of Disabled Persons of Uganda, Shifa Mwesigye explores the implementation of Uganda's HIV Prevention Strategy.
Ronald Kasule looked exhausted as he wheeled himself into a conference room at the Le Meridien President hotel in Dakar, Senegal, in December 2011. The man, who has multiple disabilities in his hands and legs, had arrived to present a paper on the sexual rights of persons with disabilities.
When he spoke, he left many in tears not only because he expressed his dissatisfaction with the organisers, who put a session on persons with disabilities (PWDs) on the third floor, which is not easily accessible. He is particularly critical of disability-blind interventions, for instance regarding sexual and reproductive health information.
"People think that because we are disabled we are also asexual and we do not have sexual urges, feelings and fantasies," Kasule says. "PWDs are forcefully sterilised by their relatives without their knowledge. Why are people with disabilities denied a chance to sexual reproductive health services?"
While Uganda has policies demanding inclusion of PWDs in sexual and reproductive health services (SRHs), Kasule says the government has not ensured that these policies are implemented in the communities and by health workers in health centres.
"They look at us as aliens when we demand contraceptives or seek sexual health services," he says.
Yet PWDs are vulnerable to rape or unsafe sex because they cannot negotiate safe sex. Some communities have myths that when an HIV-positive person sleeps with a disabled person, they will be cleansed of the virus. PWDs with HIV are more stigmatised and marginalised by relatives and friends who abandon them.
Husbands leave their wives and relatives advise them to return to the village to spare the family transport costs upon death. Yet they still have a chance of living decent, positive lives. The National HIV Prevention Strategy for Uganda does not address PWDs issues on prevention, diagnosis or treatment of HIVS/Aids anywhere in its 57 pages.
This is surprising, given that the strategy was drawn with plans to curb new HIV infections and create "a Uganda where new HIV infections are rare, and where everyone, regardless of age, gender, ethnicity or socio-economic status has uninterrupted access to high quality and effective HIV prevention services free from stigma and discrimination."
Without sex education specifically designed for deaf and blind persons, they cannot get access to correct information to protect them. The overall goal of the strategy is to reduce new HIV infections by 30% based on the baseline of 2009. This would avert about 200,000 new infections over five years.
A report by the National Union of Disabled Persons of Uganda (Nudipu) on the implementation of the Convention on Rights of Persons with Disabilities (UNCRPD) points out flaws. It says that although PWDs are included in the policy framework on HIV/Aids, health workers and service providers still lack the appropriate skills and expertise to support PWDs living with HIV/Aids and therefore service delivery is discriminatory.
Even when they are accessible, condoms may not be properly used by PWDs as the instructions on the pack or expiry dates are not brailed to help the blind. The UNCRPD obliges government to provide health services in formats that are appropriate to the special needs of the PWDs and forbids discriminatory denial of health care on the basis of disability.
The convention requires that delivery of health services be the same type and range as that provided to other people. It also requires that PWDs are give full and informed consent on medical treatment. However, governments are specifically mandated to do more for PWDs to ensure equal access to health care than for other people.
Yet the Nudipu report says most health workers fail to respect privacy or address concerns such as accessible information materials, communication and physical accessibility. Most organisations dealing with HIV-related issues have no strategies to reach people with disabilities.
A Nudipu survey conducted in six districts estimates that over 100 people with disabilities in Uganda live with HIV/ Aids and that only 20% of these access HIV-related services, such as condoms and antiretrovirals. This leaves the other 80 per cent in dire need of HIV counselling and testing, condoms, ARVs and sex education on responsible sex life. Of all the disabled persons in Uganda, only 34% can read, leaving out 66% who are either blind or illiterate.
Disabled persons are classified under most-at-risk populations (Marps) in the strategy. Most-at-risk populations include sex workers, truck drivers and fishing communities. Penninah Mugume, the programme officer in charge of HIV and Disability at Nudipu, says this leaves issues of PWDs hidden if they are classified under the Marps.
"They don't plan and fund for disabled persons like they do for sex workers or truck drivers. They have not done research on issues of disabled persons and HIV. Indicators don't reflect issues of disability in a specific way and we are not happy," Mugume says.
Issues of prevention, care and treatment are not designed to suit the needs of PWDs. It gets even worse now that government plans to phase out community outreach sensitisation workshops that take health services closer to the people in villages.
"If you have a sensitisation meeting, where are the sign language interpreters to help deaf people get the message? If people have to go to health centres for services, PWDs have mobility problems and cannot move long distance," Mugume says. Yet the UNCRPD requires government to provide health services as close as possible to people's own communities, including in rural area; making it easier for PWDs to access.
The Nudipu report suggests that the Uganda AIDS Commission should introduce a disability self-coordinating body to strengthen comprehensive programming and implementation of disability-related matters in the commission. Mugume says HIV programmes ought to involve PWDs in outreaches, health education, mobilising other people so as to meaningfully involve them in the fight against HIV rather than leaving them to be recipients of services.
"PWDs are just treated as recipients who cannot do anything else that is meaningful. If I find a disabled person giving education talk and helping at the health centre, I will feel at home," Mugume says.
The Aids Support Organisation (TASO) piloted a project of supporting PWDs by employing Betty Kwagala, a PWD, on their counselling and treatment team in 2003. When she joined, TASO also trained five of their staff in sign language interpretation to ease communication with deaf persons. They also resolved to follow blind patients to their homes and involve their relatives in helping to give the patients the correct dosage.
"It has attracted PWDs to access services; therefore, they come for counselling and testing to know their sero status. Those who are found positive are enrolled for treatment and are included in the sustainable livelihood initiative as well as supporting their children," Kwagala says.
This approach has attracted the attention of the ministry of Health, and Uganda Aids Commission which consults TASO on their programme for HIV- positive PWDS. UAC alone nominated two people to join their technical working team to be involved in consultation when developing the National Strategic Plan for 2012-2013. More organisations are getting representation for PWDs.
This Observer feature was prepared with support from The National Union of Disabled Persons of Uganda (Nudipu).