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?
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.
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.
If someone accesses services, specifically HIV testing, at Deaf-REACH, if they were to be diagnosed, what is your linkage to care like?
For our preliminary positives, we have agreements with several different places. One place that's particularly good with dealing with the deaf community, and knows how to hire an interpreter, is Whitman-Walker, which is a huge clinic here in D.C.
One thing that we do is presentations for health service providers, to try to bridge the gap between the deaf community and hearing service providers by teaching them the dos and don'ts of deaf behavior, deaf culture, how to hire a qualified interpreter. That way, if a deaf person comes in, it's not that shocking -- it's hard enough to come in for a confirmatory HIV test. Especially if you walk in and the person says, "Oh, my God; they're deaf. What am I going to do?"
So we teach them how to hire and use an interpreter -- for instance, to speak directly to the deaf client as opposed to speaking to the interpreter and saying, "Tell him / tell her" -- which you're not supposed to do.
Most of the time, we make the appointments for the client, which tends to be easier than to set up the interpreter, and make sure that they've hired an interpreter. Then we ask them if they'd like us to go with them, even just to show up and make sure that there's an interpreter there and that they are as comfortable as possible, and then just walk through the process with them.
Does Deaf-REACH offer mental health services for deaf individuals who are also HIV positive?
We have the capability, yes.
That's great. What's your role at Deaf-REACH?
I'm the director for the HIV prevention program. I oversee the day-to-day functioning of the program. I write the grants. I oversee two HIV prevention specialists. I go out and I do outreach. I do testing. I tend to do a little bit of everything. I run the Facebook page and the Twitter account. Any attempts at solicitations are all made by me.
Whose idea was it to start a YouTube series? I saw one of your YouTube videos; as a hearing person, it's kind of jarring to see a YouTube video and then not have any sound. The first time, I thought: Are my speakers off?
Yeah, that was mine. We started doing that because American Sign Language is a language that has completely different grammatical structure than English. If we have everything posted online in English, it's kind of completely ignoring our target population, which is the signing deaf community.
So we decided that we wanted a signing version so everything was bilingual, so that those people that are strong ASL users can understand it in their first language.
Can you roughly translate what the person is saying in the YouTube video?
Welcome to the HIV prevention program. We're the only agency in the Washington, D.C., area that offers HIV education to the deaf and hard-of-hearing community. What does our program do? We offer free HIV testing, HIV education for groups and individuals, HIV outreach. We go to deaf events. We do GLBT socials, government socials. We also give out safe sex kits. What do they look like? Here, this is an example of what one looks like. It tends to include male, female condoms, different kinds of condoms inside. We do counseling, one-on-one, referrals. And lastly, we help you develop your negotiation skills for condom usage.
HIV is still here, and so is prevention. If you're interested in any of our services or if you have questions, please contact us or email us. And we can find any referrals. If you would like us to present or have any suggestions about where we should go to give out condoms, let us know. We'd love to hear feedback from you and the community.
And that is basically the translation of what Robert, our HIV specialist, is signing.
What are some next steps and future goals for Deaf-REACH's HIV prevention program?
We are trying to form agreements with a lot of clinics. Since we do have a unique set of services, we're trying to forge collaborations, because the future of HIV funding is shifting from intervention-based to dealing with prevention with positives. So we are trying to stay with the current shifts in HIV prevention and forge collaborations with different clinics in Virginia, D.C., and Maryland. We are expanding our services into Virginia and Maryland, and also trying to link with clinics.
For instance, at the two health departments in Virginia, we offer HIV testing once a month. We're trying to use the clinics; that way we can still offer the preliminary testing, and deaf clients can come and we can sign, using sign language, native language, as opposed to using an interpreter. Then our agreement reads that any preliminary positives we have, we refer to the health department for confirmatory testing.
You mentioned that Maryland is the only state that has someone's auditory capability as part of an intake form.
Under Special Populations, it asks, "Deaf or hard-of-hearing?" While I was working in Maryland, we successfully got a code for American Sign Language to put down under Languages on the encounter forms, as well. So Maryland does recognize deaf and hard-of-hearing on the encounter forms, and also American Sign Language as a language.
Is that something that Deaf-REACH also wants to take up in Virginia?
We would love to take that up in Virginia and D.C. D.C. doesn't have it on their testing encounter forms, either. I think the Departments of Health all over the country need to adapt more to the Maryland model, because we're able to get statistics -- we can get statistics on other minorities, and especially linguistic minorities. But that's one we can't get. If they ask it on the testing encounter form, then we're able to get more of a snapshot of the deaf community: Where are they going to get tests? Are they going to health departments, or are they coming to places like Deaf-REACH? Are they going to their doctors? So we're trying to figure out where they are getting tested, because the numbers of deaf people that are getting tested are going down. I don't know if it's because HIV is not as terrifying as it was in the '90s, and people aren't so paranoid now that the talk around HIV and AIDS isn't as severe as it used to be. I'm not sure if that's why there are fewer people coming in to get tested.
What are some of the specific barriers for deaf people to getting an HIV test? If someone were to read this, and they know someone who is deaf, what's one way that they can assist them with getting an HIV test?
How to Put on a Condom (American Sign Language)
I think it's finding somewhere that is knowledgeable about deaf people, and knows that we are required under the Americans With Disabilities Act to hire an interpreter, which makes the entire experience completely different for the deaf client, as opposed to struggling to communicate, or writing back and forth. HIV and AIDS is such a complicated concept. How are you going to use that using just gestures if you don't know sign language, and you're trying to communicate?
And also positive, just the word itself, in ASL is kind of seen as a good thing. Like, you know, to sign think positive is two signs put together to mean optimistic. So, a lot of times when we do presentations, one of the first questions we'll ask is, "HIV positive: What does it mean?" And we try to say, "Have HIV" or "HIV in the body," and emphasize that that's what it means, as opposed to using "HIV positive" and "HIV negative" -- because it can often be misinterpreted.
So I would suggest that they go somewhere that knows how to work with an interpreter or, if there's a place like Deaf-REACH, that offers signing staff. There are a lot of health clinics now that do have staff that sign, especially if there's a large deaf community in the area. And that they know their rights for hiring an interpreter and being referred.
Anyone that emails us, if they email us, no matter where they are, we try to figure out a place. Even if that means us calling a clinic and asking, "We know a deaf person that wants to come in and get an HIV test. Can you hire an interpreter? Can you schedule it?"
The hard thing is a lot of times people get HIV tests off the fly. It will just be random: "Oh, a 20-minute HIV test; OK, I'll go in there and do that." When they're just doing walk-ins, it's hard to have an interpreter ready. So that's another sort of complication, especially, that we find for referring people for STD testing -- a lot of it is on a walk-in basis. It's hard to say, "At this time they're going to be there," when it's a walk-in clinic.
Is there anything else you'd like to add, either about Deaf-REACH, or deaf activism, or deaf HIV prevention, that we didn't cover?
I think that the deaf community is very small; it's very insular. A lot of deaf people don't want to go in for a test in the hearing community, because people will look at them and assume that they are participating in behaviors that would make them susceptible to HIV, or that they're promiscuous. When we test at, for example, Gallaudet University, we try to find a room. Our room is off to the side, down a hallway, randomly, and it's in a corner. So it does offer that confidential, comfortable environment. A lot of deaf people are paranoid that they are going to be viewed as either HIV positive or promiscuous, or one of these things, because they're getting the test.
We try to empower the community, get rid of the negative stigma and encourage everyone to get tested. For first-time testers, we give out a $10 Target gift card. During that time, we talk with them and make sure that they know: "Do you know what HIV is? How do you prevent it?" We go down the list and do a mini intervention with them, if they're not practicing safe sex; and go over with them: "Do you know the ways of transmitting HIV?" A lot of times, they don't.
I had one presentation where one female said that she didn't need a condom. She couldn't get HIV, because she took birth control. So it's really hard when there are all these misconceptions out there.
A lot of times, deaf people aren't inundated like hearing people are. They're not listening to the radio, and hearing all about HIV and AIDS constantly. Also, in the deaf community, only 10 percent of deaf people have deaf parents. So the other 90 have hearing parents. And 88 percent of that 90 don't learn how to sign.
That's a very small percentage of parents that are talking to their children about safe sex and HIV.
So there's a small percentage already of parents who are even talking to their kids in a language they understand. And then, out of that, there's probably just a subset of parents who want to talk to their kids about sex.
Right. I think there's also the medical model, where a lot of medical professionals still use deaf people as part of a disability group. And often, I've learned from disability studies conferences, that medical professionals don't view disabled people as sexual beings. They sort of assume they're not having sex, which is completely, obviously inaccurate. I've met clients that are very low functioning, and they're still having sex.
So it's dual-diagnosed and nobody's talking to them about it because they're assuming they're not doing it, which is a common misconception.
Do you see that people who come through Deaf-REACH are dealing with similar kinds of frustrations and barriers that many people who are differently abled also have, such as social isolation?
Because we're in D.C., there's not so much the cultural isolation, because there's the deaf community. I think it's more that people that come through are more concerned with other people in the community finding out their status. A lot of them leave the hearing community and become immersed in the deaf community -- because, "Wow, I can communicate freely. I don't have to struggle to read lips." Or, "I can get my point across."
They become immersed in the deaf community and then the last thing they want to do is become ostracized from the deaf community for revealing their status, since there is such a heavy negative stigma attached to HIV, still. I think by opening up the conversation and educating people: If you hug someone, you're not going to get HIV. These are things that we do discuss with them. Or we'll have shirts and once they realize the shirt says "HIV," they'll say "Oh, I don't want that." So it's kind of, well, why? Why wouldn't you want to support this?
Deaf senior citizens tend to be really resistant, but older adults are a group that's growing, in terms of HIV, with the advent of Viagra and no sex education in the school systems, especially for the deaf community. At first, they were kind of resistant, but then we say, "If not for you, then your children, your grandchildren. This is something that should be an open discussion, and shouldn't be private, and behind closed doors."
Especially with the videos, a lot of people that are in rural areas that wouldn't have access to information -- like, "How do I put on a condom?" -- and that don't want to ask, or don't know who to ask, or don't know the proper way. With women, we show them how to use a female condom.
We're trying to also empower females that, if you want to be abstinent, that's fine ... but sex is OK, and safe sex can be really sexy. It's not, "Oh, no; hold on; let me put on a condom." We try to really drill that in.
So, by putting up these videos and disseminating it, we're hoping that people that wouldn't normally be able to access this information are able to go on YouTube and type in "deaf" and Robert pops up. There he is, telling you how to use condoms, or telling you what HIV is.
This transcript has been edited for clarity.
Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.