Tag Archives: HIV

Distantism and Exclusion: Thoughts from the Deaf and Deaf-Blind


Debbie says:

I was not aware of deaf-blind poet John Lee Clark until the amazing jesse-the-k posted this quotation from him.

Each form of social bigotry has its distinctive personality and its unique set of intertwining evils. So I would like to dwell on the concept of distantia, or a standing apart, which lies at the heart of distantism. We already have a Protactile* word that describes people who pull away from touch, who refuse to connect. It is an attitude and a behavior. Many hearing and sighted societies prize it highly, and their members seek to maintain physical distance, however thin those margins may be. Their rulers and heroes stand alone–the more remote they are, the more highly esteemed they are. Even when the less privileged are squeezed closer together due to poverty, exploitation, or as punishment, distantism manifests itself in the long lines, tight cells or dubicles, and above all, their being removed out of sight and hearing. For all the hype around its ability to connect the world, technology has often served to isolate people in every other way.

The first sentence is worth enshrining on city plaques and statues (after all, we’re going to need some new ones.)

For the rest, I do not 100% agree with him about technology and distance (I don’t 100% disagree either). The rest of it rings so true to me, at least in the U.S.: we are so committed to physical distance, to the remoteness of “rulers and heroes.” He doesn’t quite say that the close quarters of “poverty, exploitation [and] punishment” are part of the ways we revere distance, but he surely implies it.  Lots more of his thoughts about distantism at the link, including ever-crucial thoughts about deaf-blind as teachers of the deaf-blind. Nothing about us without us.

I hadn’t thought about The Miracle Worker in years, if not decades. Just having the title pop into my mind in 2017, when I was reading this, I could instantly see the way I would critique that work now (even though I loved it as a child). For those who don’t know it, it’s a play and film from 1963 and movie about Anne Sullivan, who taught Helen Keller. The play is based on the autobiography of Keller, but centers Sullivan. Keller was the world’s most famous deaf-blind person, and a strong political activist: in the 1950s, I didn’t know what was wrong with making the story about Anne Sullivan. But I do now.


Before I got around to blogging this, jesse-the-k added another layer by linking to Matthew Rodriguez’ “A Sign of Trouble: The HIV Crisis in the Deaf Community.” This article discusses high HIV rates among Deaf people, and tells a couple of stories, including this horrifying one:

In July 2016, [Darrin] Smith, who identifies as black, gay and deaf, presented to a doctor seeking pre-exposure prophylaxis. Despite his knowledge of PrEP, the HIV infections rates in the black queer community and his willingness to take the drug, one thing stood in his way: a hearing doctor. The doctor told Smith that Deaf people should not be having sex.

“I was upset, I was angry,” Smith told INTO. “Just because I’m deaf does not mean I’m broken. It does not mean I cannot function as a normal human being.”

Let’s be clear. There is absolutely no reason why a Deaf person should not have whatever kind of sex he/she/they want, and absolutely no reason a Deaf person should not have access to PrEP.

Those in the community realize that this complicated problem requires complicated solutions. Smith and [deaf HIV-positive man Matthew] Byrd both expressed the deaf community itself need more education about the ways that race, sexuality and HIV status intersect with their hearing status.

“It’s really hard to talk about these things. It’s hard because there’s a layer of racism, there’s a layer of homophobia,” Smith said. “There’s a level of intersectionality that has to be talked about.”

Byrd said that dealing with HIV stigma among the deaf community has meant there are few spaces where he can be himself.

“The only place I feel that there’s any kind of mutual respect is the deaf, gay, POZ community,” he said. However, Byrd said, they have no national HIV organization to foster community or educate others.

Thinking about the struggle of Deaf people to get reasonable HIV care leads back to distantism. Intersectionality, such a buzzword for the last several years, speaks to at least acknowledging, if not addressing, distantism. The HIV medical community must acknowledge the specific needs of Deaf people, and bring Deaf educators under its umbrella, just as all of us need to acknowledge the places where we use distantism to keep other people away from the resources, care, and agency they need.

Thanks, Jesse-the-K!



World AIDS Day/Day with(out) Art

Debbie says:

Tomorrow, December 1, 2012, is the 24th Day without Art, in commemoration of World AIDS Day. For the first eight years of the Day without Art, many museums and galleries would shut their doors to honor and remember the artists who have died of AIDS. In 1997, however, the initiative shifted to a day with art. Visual AIDS, sponsor of the program, says:

the name was retained as a metaphor for the chilling possibility of a future day without art or artists”, we added parentheses to the program title, Day With(out) Art, to highlight the proactive programming of art projects by artists living with HIV/AIDS, and art about AIDS, that were taking place around the world. It had become clear that active interventions within the annual program were far more effective than actions to negate or reduce the programs of cultural centers.

This year, the group is focusing on screenings of United in Anger: A History of Act-Up, a documentary by Jim Hubbard. A list of screenings in 15 cities around the world tomorrow, plus more before and after the actual day, can be found here.  The film is produced by Jim Hubbard and Sarah Schulman (who happens to be my first cousin).


The film is described as:

an inspiring documentary about the birth and life of the AIDS activist movement from the perspective of the people in the trenches fighting the epidemic. Utilizing oral histories of members of ACT UP, as well as rare archival footage, the film depicts the efforts of ACT UP as it battles corporate greed, social indifference, and government neglect.

As of 2010, something on the order of 34 million people around the world were living with HIV and AIDS, the largest number being in sub-Saharan Africa.This includes about 2.5 million new cases that year. That is pretty close to the number who have died of AIDS/HIV-related causes around the world since the beginning of the epidemic.

That’s a lot of art (and science and work and family and life) we’ve lost to the virus. I know there are people in my life who deserve remembering. So, go find a screening if you can, or do something else to commemorate the dead and support the living. I’m going to.