Munich, Germany — Double the stigma, double the challenge
Living with HIV as well as a disability is an uphill task for persons with disabilities. Thousands of people with disabilities (PWDs) often fear discrimination and stigma from family members, the community, and the general public, which prevents them from disclosing their status which means that they may be left behind in HIV prevention efforts and treatment.
"Just like anyone else, PWDs struggle with HIV disclosure due to fear of stigma and discrimination. This fear often prevents them from seeking essential medical services, leading to suffering, social isolation, and even suicide," said Edgar Bwire, a 39-year-old Ugandan counselor currently working at the Rwanda National Union of the Deaf in Kigali, Rwanda, who dedicates his work to ensuring people with disabilities are included in the fight against HIV/AIDS. He is also a part-time facilitator for DeafNet Centre of Knowledge, an organization based in South Africa, creating awareness in deaf communities.
This experience has exposed him to a network of disability advocates fighting for the inclusion of people with disabilities in HIV/AIDS awareness and prevention efforts.
The situation is worsened by cultural stigma.
"We've always advocated for 'nothing about us, without us'," he said. "It's crucial that people with disabilities are involved at every stage of designing and implementing HIV/AIDS programs. Unfortunately, decision-makers often create programs without consulting us, resulting in efforts that miss the mark entirely regarding accessibility."
The situation is worsened by cultural stigma.
There is a widespread perception that witchcraft or infidelity is attributed to most causes of disabilities. Such misconception often leads to severe discrimination, especially for those whose disabilities are associated with witchcraft in their communities.
In recent years there has been an increase in the prevalence of HIV and AIDS among people with disabilities. According to the World Health Organization, at least one billion people live with some form of mental or physical disability. Most are found in low-income countries where healthcare provision is poor and the formal education system is limited thereby exposing them to greater risks due to lack of knowledge and information.
Studies have shown that individuals with disabilities are equally or more likely to acquire HIV compared to the general population. This is due to many factors that include a higher incidence of sexual violence, and a lack of access to vital information on prevention measures and treatment services. Unfortunately, community outreach programs, often run by governments and NGOs, marginalize PWDs when they are distributing condoms and essential information in places where people with disabilities are less likely to be present.
In addition, the central barrier to including PWDs in the HIV response is the persistent myth that they are not sexually active and therefore don't require access to HIV services. As a result, PWDs become invisible in government statistics meaning that they cannot get healthcare services while society discriminates against them. Such societal forms further marginalize them into poverty perpetuated through violent acts done upon them. Several factors including lower education levels and literacy rates, increased poverty levels, and heightened risks for physical abuse and sexual exploitation all contribute to this vulnerability.
"Supporting and promoting charities that conduct home visits is crucial to reach diverse PWD communities who may face additional barriers to accessing services," said Bwire.
Systemic vulnerabilities
To tackle the HIV-related systemic vulnerabilities, extensive systemic change is necessary in various sectors of society. The primary areas that need attention are economic empowerment through job training and accessible grants, community-based counseling services, and the provision of HIV education in formats accessible for all because poverty often forces people into risky situations. "We need to increase HIV awareness among PWDs through accessible and affordable methods," he said. "We need to empower them economically as a measure to prevent new infections by keeping them busy learning or working to earn a living instead of indulging themselves in all forms of prostitution."
"Most people, including PWDs, don't contract HIV by choice. They are exposed due to complex factors, with poverty playing a major role," he said. "Most sex workers are women who are jobless or poorly empowered economically that in the struggle for survival, they turn to sex work to earn a living."
"To address this, systemic actors need to focus on economically empowering high-risk populations by establishing affordable vocational training centers, providing easy access to grants, and offering mentorship for starting their own businesses," said Bwire. "Readily available guidance and counseling services in communities can equip individuals with the skills to make informed choices about their health and well-being."
Several key barriers prevent people with disabilities (PWDs) from accessing vital HIV/AIDS services, with one of the main challenges being the need for trusted and confidential healthcare workers.
"For PWDs," Edgar said, "disclosing their HIV status can be especially difficult due to the fear of stigma and discrimination. Deaf individuals, in particular, struggle with spoken or written communication, creating a significant gap in their interactions with health workers." While sign language interpreters can bridge this gap, "including a third party raises confidentiality concerns," said Bwire.
Deaf and visually impaired individuals face the most significant barriers
He added that many health centers lack the basic infrastructure to accommodate people requiring mobility assistance, making it incredibly difficult to access essential services.
"In my experience," he said, "Deaf and visually impaired individuals face the most significant barriers in accessing HIV services and information. This is primarily due to their sensory limitations. Radio broadcasts, for example, are entirely inaccessible to Deaf people. Similarly, television messages without sign language interpretation or captions leave them in the dark. Even written materials can be a challenge for Deaf individuals who haven't mastered reading skills. To make matters worse, there's a scarcity of HIV information translated into Braille, creating another hurdle for those with visual impairments."
More inclusive
Bwire reiterates the principle of "nothing about us, without us," highlighting the importance of involving PWDs in shaping the conference experience. He voiced his concern about health information that consistently fails to include and address the needs of people with disabilities. Bwire said a clear solution is that "all government and NGO programs targeting HIV should establish dedicated special needs sections to ensure our voices are heard and our specific needs are addressed."
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He called for greater disability inclusion at conferences like the International AIDS Conference (IAS). "I urge the IAS to establish a permanent space for PWDs at the conference. This will allow them to share their experiences and contribute to achieving full inclusion in the fight against HIV and AIDS," he said.
Even at this current conference, I requested a sign language interpreter but was told that all presentations would have live captions ...
The 25th International AIDS Conference is from July 22 to 26 in Munich.
"The conference should establish a dedicated hub with presentations and resources specifically focused on disability and HIV/AIDS," he said."PWDs have a right to choose the accessibility options they need. This includes access to sign language interpreters and assistants, not as a burden, but as a fundamental right."
"When I won a scholarship to attend my first International AIDS Conference in Washington, I requested a sign language interpreter, but this request was ignored. Following up with the organizers didn't lead to any resolution," he said.
"Even at this current conference, I requested a sign language interpreter but was told that all presentations would have live captions, but what happens if I need to ask a question or make a point? It seems that providing interpreters or assistants for people with disabilities is seen as an unnecessary expense, though it is a fundamental right," said Bwire.
