The Overlooked: Living with HIV and a Disability

In the last 30 years, HIV activists have targeted much of their fervor advocating for wider access to healthcare and eradicating stigma. People who are physically or intellectually disabled (poz and not) have always marched side-by-side in the battle, yet, to the general population at least, their needs seldom get the attention they require.

People living with disabilities are often excluded from many HIV prevention measures, despite being more at risk than some other marginalized groups. According to the U.S. Census, in 2015 nearly 40 million Americans identified as disabled — representing 12.6 percent of the population. The data also showed that disabled Americans earned significantly less than able-bodied colleagues. Disabled people are more at risk of losing health coverage if preexisting conditions can be excluded. With added disability-related costs, it’s hard to afford treatment without government aid, and even that was nearly taken away last year.

In 2017, when the majority Republican Congress rushed to destroy the Affordable Care Act — which would have consequently threatened social security benefits like Medicaid — disabled rights activists swarmed Capitol Hill. Many of the activists were also poz. All of them relied on these benefits for their survival and willingly faced arrest, using their bodies to block members of Congress in hallways or outside buildings. Colleen Flanagan, cofounder of Disability Action, a disability rights organization, was one of them.

“Right now on Capitol Hill, scary threats are being made to disability social justice,” Flanagan remarked at the time. “The future of disability rights can not afford us to delay in taking action!”

The need for stronger inclusion goes far beyond access to affordable health insurance. According to a recent UNAIDS report, people with disabilities (in particular women and girls) are too often turned away from HIV services and considered low priorities. Consequently, they’re not provided equal access to HIV education and prevention efforts.

What many don’t seem to realize is that women and girls with physical disabilities are more likely to experience sexual, physical, and emotional violence than those without, all of which can make them more at risk of contracting HIV. Those with mental and intellectual impairments are two to eight times more at risk of being victimized — yet they’re commonly left out of data collection in gender-based violence programs.

Modes of communication are a barrier, too. Sign language, Braille, large print, or easy-to-read tools are seldom included in HIV prevention strategies. Furthermore, medical professionals use difficult to understand jargon, and often assume that disabled people are simply not sexually active (consensual or otherwise) and therefore are “not in need of such services,” the UNAIDS report says. But physically or intellectually disabled people have equal or greater exposure to all known risk factors for HIV contraction.

Antiretroviral side effects can also add a variety of unexpected complications for disabled poz folks. While vomiting and diarrhea are unwelcome even to those privileged with able-bodies, for those bound to wheelchairs or with physical limitations that slow them down or make bending over difficult or impossible, these side effects can become debilitating.

UNAIDS points out, “healthcare systems in many countries are designed to provide acute HIV care but lack integration with rehabilitation services that try to prevent impairment and ensure participation and quality of life.”

While legislation like the Americans with Disabilities Act have advanced progress toward anti-discrimination in employment, transportation, and other areas of life, very little focus has been made in bridging the gap toward access to care.

One group of researchers in KwaZulu-Natal, South Africa, integrated HIV care in a 200-bed public rehabilitation hospital and reported on the experience in AIDS Care, showing the complexities poz people dealing with functional limitations must face. Thanks to the report, activists were able to strengthen South Africa’s dedication to integrated care, set forth in the country’s 2017 National Strategic Plan on HIV and AIDS, a long-term vision which includes implementing better accommodation for disabled people living with HIV.

In America, a push for more convenient services for disabled people is ongoing. Accommodations for the disabled rarely think beyond people in wheelchairs, and, as many who use wheelchairs can attest, even “wheelchair accessible” is often a misnomer. There may be a ramp, but an elevated doorframe stops someone from rolling inside; or the doorway may be too narrow for certain chairs.

UNAIDS reports that something as simple as providing information in a way that’s accessible for everyone is crucial and should remain a top priority. Solutions like advancing the integration of rehabilitation into HIV care, offering affordable assistive devices, and using alternative service delivery modes for those confined to wheelchairs, homes, or beds should be at the forefront of such efforts.

“The vulnerability of people with disabilities is linked to social and structural drivers, such as increased risk of gender-based violence and multidimensional poverty,” UNAIDS points out, further urging that the “economic empowerment of people with disabilities is crucial to address social and structural factors that increase vulnerability to HIV.”