February 29, 2012
Quick Facts About
In TheBody.com's HIV/AIDS Organization Spotlight series, we focus on some of the true unsung heroes of the HIV community: the organizations that support and provide services for individuals living with, or at risk for, HIV. We profile some of the best in the U.S. and learn how they got started, what challenges they face and what's in store for them in the future.
This week, we turn our sights on San Antonio, Texas, and Mujeres Unidas. According to the Texas Department of State Health Services (PDF), 4,316 people were living with HIV in Bexar County at the end of 2010, and an average of 270 new diagnoses were reported per year between 2006 and 2010. And with Latinos making up 26.5 percent of people living with HIV in Texas, the advocacy and support services that Mujeres Unidas provides for the community are more important than ever.
TheBody.com recently interviewed Tina Sigler, the executive director of Mujeres Unidas.
Can you tell me a little bit about how the organization got started?
The organization got started back in 1994. They were a group of women and men that got together. Because at that time there was a need here in San Antonio to have information available for people with families that were finding out that they were either infected or affected by HIV/AIDS, yet there was a lot of need for information to be translated, information to be available to folks in communities that traditionally would not have access to it. There was great need for support, so it was families trying to understand, "What is this? And what's going to happen to our family member? And what can we do to help?"
So these women and these families got together and started these support groups. Eventually, over time, with the assistance of some other agencies as well, they applied for the 501(c)3 status, and acquired that, and have continued pretty much as a grassroots operation.
There was some time when we had Ryan White funding, and another large federal grant, but now we are operating strictly on private donations. And there are several reasons for that -- and we can get into that later -- but we continue to operate more as a grassroots operation.
Those challenges that you faced in the beginning, do you still see those today?
Yes. We still meet them today. Because even though here it is, years later, you should hear the stories that our clients tell us. Folks that are here helping out -- volunteers and the peer educators and health educators -- they hear the stories themselves, and they go, "Wait a minute. That's what we heard 10, 15, 20 years ago. Is that still happening?"
And, unfortunately, it is. We still have a big lack of education out there, not only with the community, but even with our medical -- the doctors and nurses -- the media, politicians. We still have a big gap, I think, of information now.
Why do you think that is?
Well, the experiences that we have had -- I can name several examples. I was on an airplane with a gentleman, a professional, and we were talking about what we each do. And then when I tell him what I do, and he goes, "Well, we don't have to worry about that, right? We've got medicine for that."
I said, "No. We do." So the general public that's not in touch with this community all the time thinks, well, it's taken care of. There is a pill for it. So there's no problem there. They don't understand the challenges of the medication, of the funding, etc.
And then we talk to other community members, professionals, and we start talking about the prevention education, and they're, like, "What are you doing working there? Aren't you afraid of working? Aren't you afraid you're going to get it?"
I say, "No. You don't get it by touching. You don't get it by hugging." So, just a general lack of information there.
We've got people in doctors' offices -- front offices, back offices -- where we've had clients that appear for an appointment, and they're told, "Oh, the doctors won't see patients like you."
And one particular member here said, "What? He doesn't see short women? Hispanic women? Fat women? What does he not see?" And of course, she knew what she was alluding to. And she says, "Oh, you mean he doesn't see HIV-positive clients?"
Then we've had nurses in hospitals, where a patient is in there waiting to get tested, other particular tests, and they have to draw blood. And the nurse will tell him, "I'm not drawing your blood because you're HIV positive."
And so we still continue to run into those types of situations. And what we hope to do here is not only the educational part of it, but empower the people to be able to stand up for their rights, to know their rights, and to be able to stand up and say, "Well, you know what? Then get me another nurse. Because I need to have my blood drawn, because I need to have these tests done." Or, if they're not willing to do that, to call for a supervisor, to go above them and take care of the business that needs to be taken care of.
And then, politically, of course, it's very easy to help out [for] women's breast cancer, or diabetes, and the American Heart Association. But when you mention an HIV service organization, there's still a bit of hesitancy there on many people's parts.
Do you think any of these difficulties are specific to your location, being in the South, or Texas in particular?
At times I thought that it would be because we are kind of a traditional state, but at the same time, Texans are known as rebels, so no, not necessarily because of that. And I know that religion plays a big part in that as well. I've had an opportunity through my church to deal with that. But yet, at the same time, I do find a lot of support and people willing to help out in that place, too.
So, culturally, we still have a lot of stigma associated with that. But I think if you really dig deep underneath that, it's kind of like that old saying, the squeaky wheel gets the grease. And perhaps we don't have the very, very strong advocates that a San Francisco or a Chicago would have. And perhaps we don't have the numbers that those areas would have, in comparison.
I think we're getting there, as far as adequacy, though. In this last year, I've seen a change in a lot of folks, becoming a little bit more empowered, a little bit more willing to stick their necks out.
But here's the other thing: In Texas, and here in San Antonio, we also have a lot of issues with immigration. Therefore, people are not willing to speak up. We had a women's conference here in June that the Ms. Foundation helped sponsor. And we invited women from across the state of Texas. And I wanted to get representation from all the cities and the major areas. And it didn't really hit us until we were preparing for the folks coming in that there were some people coming in from other cities that, at the last minute, were afraid to come in because of their immigration status.
And so that's probably one of the big differences that we have here versus other areas.
In terms of services, Mujeres Unidas provides support groups and prevention education?
Yes. We do education and prevention. We have what's called in Spanish, pláticas, which means talk. And we'll get together in either some small support groups or in community venues, any group that wants us to get together to talk to them about it.
So we do a lot of that. We help the community through utility assistance. And that's for everyone, not just folks that are infected or affected by HIV. Bexar County has a program that helps out with utility assistance. And one of our staff persons here, in particular, is a very, very good person at networking and advocating and helping the community. And so we have a lot of people that come by here to solicit the application. We help them fill it out. We navigate it, and then the county takes over, and helps people with their utility assistance.
So as a result of the people coming in for that, we also have an opportunity to talk to them about HIV, and about other referrals to stuff that they might need, as well.
And then we provide free HIV testing, and we have a very informal food and clothing bank. We try to help people learn how to more than just advocate, to really feel better about themselves and be able to defend themselves in whatever arena, to know that they do have rights and they do merit respect.
It's more of a social network, like family support. Because some folks don't have family here, you know? Or if they're not telling their family about the issue of HIV then we're the only family they might have. So they can come discuss it here with the other staff members and the other educators and the other folks that are part of their group, so everybody supports each other.
That's amazing. And how many people do you serve?
Oh, it varies, depending on the jobs that folks have. But I think it's, on average, about 60 families.
And what's the response been like?
It's been great. We just wish we had better quarters and more space and money, of course -- more funding to be able to hire more of the support staff, and to be able to provide the services.
And then transportation is another big issue for a lot of folks here. We're right near a bus line and so that helps. But sometimes the folks don't even have enough for bus passes, which is something that we used to have. When we had Ryan White funding, we used to hand out bus passes.
And so a lot of that support is still needed. There's still a big, big gap, I think, in the community for social support services. Because we still have folks out there [who] it may take them a while before they get enough courage to come and talk to someone that will help them navigate through the system, or to find that particular agency or case manager that they feel comfortable with working through all of their issues. There's usually a lot more than just the HIV.
How can people help and get involved then?
Well, for people that are either infected or affected, one big way that they can help is by volunteering their time, coming to be one of the educators, and coming to be one of the navigators, or the madrinas, as we call them, kind of like a godmother to help guide you through this.
So they can help with their time and their talents in that way. We have other people who would be great at doing public speaking, making presentations. They would be good at going out and educating more groups.
And of course you can't do a lot of these things without funding. So for people who want to help and don't know how or don't have the time, perhaps they can afford to provide some funding for someone else to do that work.
If we could get every person in San Antonio to just give us a dollar, we wouldn't have to worry about the stability of this agency. But it's the agencies that have been around and that are very viable right now, they generally have some very good sponsors, long-term sponsorship, or they've accumulated property and wealth in other areas that help sustain them.
We, being a small grassroots, don't have any of that, at this point. So I would love it if we could find somebody to provide that stability. It may be one family that we see, but the impact of that one person radiates. And you're affecting 5, 10, 15, 20, 30 people.
Definitely. Now what advice would you give to somebody who is living with HIV, who has never been to an HIV organization? Or maybe he's too afraid because of the whole immigration thing? Or just stigma, in general?
I would say, come talk to us. Come visit us. Come sit down, have some coffee and break bread with us and talk. And find out what we do, and how we operate, and what our feelings are, and how we deal with things and see if that's to your liking. I can almost assure you that it would be. Because the people that we have here, the folks, the staff, everybody is very passionate about what they do. Believe me, they're not doing it for the big bucks. They could get better pay elsewhere. And we have a lot of volunteers. We don't get paid. We're just here because we believe in the cause.
So if they were to come and meet the people, they would get a feel for if this is the right place for them.
And what direction is the organization moving? Where do you see it in the next three years?
Working very hard to get some kind of stabilized funding. Because at this point it's very difficult to have even paid staff when you have that uncertainty of funding. We'd like to be able to eventually move in to even a small home. We rent a place right now. And the rent is ridiculously high, and it's not in that good condition.
We would love to have a home, because we like the home environment. I think people feel comfortable that way, with a large kitchen so people can sit around and cook and coffee klatsch. Just like in some businesses, the discussions are held on the golf course; here they're held around the kitchen, located within a central location where people can access us, whether they have to travel by bus or by private car.
So funding for better quarters to be able to provide the services that we have. Then with that, we could perhaps hire some additional staff. We'd love to be able to have some resident social workers that are willing to work within our model and how we operate here.
Yeah, that sounds wonderful. I hope that works out.
Well, I hope so, too. We've got contingency plans, in case the funding is difficult. And one of the things we're looking at is negotiating, talking to another organization that's interested in perhaps starting another free clinic here in San Antonio. Because we need one. And perhaps joining forces that way and providing an adjunct to the free clinic side of it. That would provide more stability as well.
How do you think your organization, or others like you, can get funding?
I think there's still an untapped market, if you will, if you look at it from a business standpoint. And one of the roadblocks that we run into sometimes is that people donate to, for example, the San Antonio AIDS Foundation. And they've got very stable funding. But a lot of times, the community donates to them, thinking that this is a foundation for all AIDS organizations. And it's not; it's a standalone organization.
So one of the things that we were thinking about is having some kind of a collective force like the United Way, the American Heart Association or the American Diabetes Association. If there were maybe an American HIV Association, that would be collaborative and help with funding too.
I've got a list here of the top 10, 15 billionaires in the world. All it would take is a few of them to say, "OK, maybe this year we'll help funding here; we'll help funding there," and put more of the emphasis on HIV, if they knew.
And it's HIV and other health concerns now. Because as the population ages, they're going to have these other complications, as well. So if they were willing to donate to more of the grassroots organizations, or those that are not funded by any large federal grants or any large entities, their money would do so much good, and help so many people.
Warren Tong is the research editor for TheBody.com and TheBodyPRO.com.
Follow Warren on Twitter: @WarrenAtTheBody.