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Deaf-REACH's HIV Prevention Program Speaks the Deaf Community's Language

November 25, 2013

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From the Margin to the Center

From the Margin to the Center: A Spotlight Series

Did you know that people who are deaf or hard of hearing are two to four times more likely to contract HIV than their hearing counterparts? That's just one of many facts that Sylvie Soulier shares in this enlightening interview about Deaf-REACH, a community-based organization in Washington, D.C. Aside from its mental health and other services for deaf communities, Deaf-REACH also has an HIV prevention component, which Soulier and her team manage.

Think about it: When visiting the doctor, do you need an interpreter? Are you viewed solely as a condition with which you were born? Are your parents or friends unable to talk to you freely and easily about sex? How do you tell the guy at 7-Eleven to get you some condoms from inside the glass case when your first language is American Sign Language? These and other issues could stand in the way of "getting to zero" in the deaf community, but Soulier and Deaf-REACH are on the front lines of making sure deaf communities get the appropriate prevention outreach they need.

Can you start off by telling us about how Deaf-REACH began, and what services you offer now?

Sylvie Soulier

Sylvie Soulier

Deaf-REACH is a nonprofit organization in Washington, D.C. It was established in 1972. We offer services such as employment, a day rehabilitation program, group homes, and the HIV program. We also do community support, offering services out in the community for the deaf. We started because deaf consumers were being sent to St. Elizabeth's, which is a hospital in D.C. for the mentally ill, and they were basically just staying there. And so Deaf-REACH was incorporated in 1972.

How long has your HIV prevention program been around?

It was established in 2001, but the funding has been a little off and on. So, it's probably been consistent since about 2005, but it was established in 2001.

Were you around for the genesis of the program?

No. I was not. I was with a similar program in Maryland that did HIV prevention for the deaf.

Were you involved in HIV services first? Or did you come to deaf activism first?

Deaf activism. I got my master's degree from Gallaudet University, which is the only liberal arts university for the deaf in the world. I then applied for a job as director for an HIV prevention program in Maryland, and got into HIV, and realized that, according to studies, deaf people are actually two to four times more likely to get HIV than their hearing counterparts. And that's when I became really involved in trying to open up the dialogue around HIV within the deaf community.

Just to get that correctly: You said that people who are deaf are two to four times more likely to get HIV than their hearing counterparts?

Yes -- and that's based on statistics collected in Maryland. Maryland is the only state in the country that asks hearing status on their HIV encounter forms.

We've asserted many times that, if other states could start collecting the data, we would be able to have a better snapshot of what HIV looks like for the deaf, in general.

How does Deaf-REACH go about doing outreach to deaf communities?

Our primary services are free HIV testing; HIV education, individual and group; outreach at local events, which involves safe sex kit distributions; counseling referrals; and we have also adapted Safe in the City, which is the CDC's intervention that is about condom negotiation. A few years ago we adapted that and hired deaf actors, and now it's totally in American Sign Language (ASL). So we show that as part of our HIV 101 intervention.

As far as outreach, we also go to Gallaudet University, which, as I mentioned earlier, is the only liberal arts university for the deaf in the world, and it happens to be in Washington, D.C., conveniently.

Basic Questions and Answers About HIV/AIDS (American Sign Language)

How did you end up going to Gallaudet and getting involved in deaf activism?

I started learning sign language in high school and then got my undergrad degree in ASL with a minor in interpreting; and then my master's from Gallaudet in deaf studies, with a focus in deaf history, and just went from there.

While I was at Gallaudet, I worked as a resident adviser (RA) and noticed that there were no condom services. Even the RAs weren't allowed to give out condoms. And if you imagine youth, or college-age kids, going to buy condoms in D.C.: We have the glass windows at the gas stations or 7-Elevens. It's hard enough for a hearing person to negotiate buying condoms, because the person at the store has to come out from behind the glass and then go and open up the cabinet that has the condoms in it. But for a deaf person that's manual, that's not oral at all, to also have to negotiate that is extremely difficult and complicated.

We also discuss how to negotiate purchasing condoms, and try to make condoms readily available. We have a student representative at Gallaudet that always has condoms. She calls herself the Condom Fairy. She decorates her door with them. So students can just walk by and take one down.

That's great.

At Gallaudet we also have drunk goggles that we use as kind of an intervention to just make it more light: There are the deadly vision goggles, and kids may say, "Yeah, I'm such an expert at putting on a condom; I know how to do it." We'll say, "OK, well, sometimes if you're drunk, you can be a little impaired." We'll have them put on the condoms and say, "OK, you're supposed to feel for air, check the expiration date, put it on." That gives them another perspective.

We try to think creatively about how to engage. And then we also incentivize a lot. Having shirts and making other visual materials -- since the deaf community is so visual, we try to do everything bilingual. We have a video in ASL that also has a transcribed version.

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