When Disability Stigma Causes Disability

When Disability Stigma Causes Disability

By Guest Blogger Peter Kronenberg, Vice President for Communications, the National Association of People with Aids

Thirty-one years ago, the Centers for Disease Control and Prevention reported cases of a new disease we now know as AIDS – Acquired Immune Deficiency Syndrome. 

This week, the nineteenth International AIDS Conference meets in Washington, D.C. There’s hope in the air. For the first time, HIV/AIDS scientists, clinicians and policy makers think it may be possible to bring America’s HIV epidemic to an end. 

We’ve made remarkable scientific and medical progress against HIV. Three decades after those first cases, we now know what causes AIDS: a previously unknown virus, identified and given the name human immunodeficiency virus, or, more commonly, HIV. We now have medicines that don’t permanently cure the virus, but keep it under control for most people who take their medications as prescribed. Today, people with HIV can lead normally healthy lives with nearly normal life expectancies. 

We’ve made epidemiological progress, too. We know today that people whose HIV is fully suppressed are radically less likely to pass their infections on to others. In principle, near-universal testing and treatment could make new HIV infections almost a thing of the past. 

And yet new infections keep coming – an estimated 50,000 a year for half a decade now, despite the scientific and epidemiological progress. 

Maybe it’s time to start thinking of HIV infection as a disability again, as we did in the years before we had effective medicines. 

HIV infection is still a disability because of stigma. All of us who live with disabilities know how quickly stigma follows the perception that we are “different.” School children taunt classmates with motor disabilities. Adults talk to other adults in wheelchairs as if they were five-year-olds. 

Living with HIV is a disability like any other in the opportunity it gives others to see us as “different.” 

It may be unique, however, in being a disability that is actually caused by stigma. 

HIV spreads mostly – let’s be frank – by sexual contact. There are communities in America where talking realistically about sex is deeply taboo. The result is that too many Americans don’t know they are at risk, because they think HIV infection only happens to “those people” – whatever we mean by those people. Too many Americans don’t know that most new HIV infections happen where there are already high numbers of undetected, untreated infections. Too many Americans think you have to be promiscuous or sinful to get infected, and would rather risk dying of untreated HIV than get tested and know for sure that they themselves had just become “those people.” 

A majority – possibly as many as three-quarters – of all new HIV infections in this country come from the 20 percent of Americans with HIV who don’t know they are infected. They don’t know because they are afraid to know. We are literally dying of shame. 

As the nineteenth International AIDS Conference meets this week in Washington, we expect news of exciting medical breakthroughs. HIV may become fully curable sooner than we ever thought possible. 

But the HIV epidemic won’t end until we face down the stigma – the unlovely but basic human impulse to define ourselves up by defining others down – that goes with living with HIV and so many other disabilities.

Get tested. Visit the CDC’s National HIV and STD Testing Resources website to find a testing site near you. Also, visit NAPWA.org for more resources on what to do if you test positive.