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Folder d.11 audio 39;36 minutes raw transcript, AIDS Project Southern Vermont, Susan Bell. 4,773 words. First published November 11, 2010
Phil: As I put the microphone down I turned it off. But that little line shows it is now recording, and we just had a preamble conversation.
Susan: Yes we did.
Phil: Where I also demonstrated my technological incompetence in not recording anything.
[extended laughter]
Phil: Therefore, to recap:
[laughter]
Phil: Here I am with the executive director of AIDS Project of Southern Vermont, Susan Bell, who is married to an old buddy, a mad scientist,
[laughter]
Phil: And you started here 20 years ago — sounds like I did some research, doesn’t it, but I am repeating what you have just said — the project started with a march on the street, and then became a buddy-system to help people with AIDS, and you said at that time in the late eighties there was an awareness program here, not just in New York and San Francisco, and that AIDS was going to come here too. And we were just leading up to my question, to what extent is it here now — then I realized nothing was being recorded.
Susan: You did a very good job in repeating what we said.
Phil: I omitted some details, but I am a highly listening skilled married man!
Susan: Well, first of all, AIDS has changed a great deal and there are now medications to help people to live longer and not turn into a chronic illness. We have a wonderful clinic here at the hospital, called the Comprehensive Care Clinic, and AIDS clinic, and it’s staffed by a nurse-practitioner, and supported by infectious disease specialists, who come both from Fletcher Allen and Burlington, and Dartmouth Hitchcock. So we have a wonderful resource right here where you can get state of the art care right here in Brattleboro, which is wonderful.
Phil: That’s at BMH, Brattleboro Memorial Hospital.
Susan: Yes, and we also have an office in Bennington, and they have an infectious disease doctor over there too, Dr. George. So, people have pretty good access to medical care. The fact that people aren’t dying as frequently as they used to doesn’t mean that people don’t suffer from this illness. First of all there are many side-effects with the medication that some people can tolerate and others can’t. And people definitely die, we have had a couple people die this year. And the reason I think people believe that AIDS has gone away is because of these medications — we certainly know that it hasn’t. We serve about 70 people in southern Vermont at any one time. We provide pretty much straight social work services, making sure people have housing, food, all the benefits they are entitled to, medical care, medicines, and all the things they are entitled to.
Phil: Yes. So, even though people are on medications it is often debilitating, and it’s hard to do any regular thing, like going out to work for example.
Susan: Yes. Another part of that is that for many people AIDS is only one of many challenges they have in their life. There could be a wide range of things that you or I or anyone else might face in their life, such as poverty or sexual abuse issues, or domestic violence or mental health issues, any of those things added on to the fact that someone has HIV, can really complicate things, so the social work services have to take into account all of those different challenges.
Phil: And I suppose a sense of isolation too. From other individuals, family, the community.
Susan: Stigma is still very much a part for what goes on with AIDS. So some people are very cautious about revealing their status, and some people aren’t. And they have good reason, for instance, if they have children in school there might be people who don’t understand if AIDS is transmitted easily.
Phil: What is your sense of that? How much does the public really understand about contacting AIDS? Out of ten, is it a three or an eight?
Susan: These days I think the problem is more — let me back up, first of all I think people have a fairly good understanding after thirty years now, and particularly folks who are under the age of, say, 30 or even 40, since many people have known about it from school since they were in kindergarten. They have a pretty good idea that it’s not spread by mosquitoes, and you don’t get it by sharing a glass, however, the flip side of that is that people think it is primarily an illness of people who are not me — you know, people who are bad in some way, all the epithets you can think of, all the -isms, homophobia, racism, are the things that people in their lives think of when afraid, and other people are attached to the idea of AIDS. So, it is very hard for people to think it could effect them. In some ways one of the most important things we do is provide HIV testing, anonymous, no names given, and it’s an oral test, no blood drawn. It’s about the simplest test you could possibly take, and we can get results in 20 minutes.
Phil: When you say, ‘anyone’, and it’s not people like me, can that mean that you could be a female heterosexual, who can still get AIDS — is HIV a predominantly homosexual condition for males, but not limited to that?
Susan: In Vermont most people who are diagnosed in the state report their risk factor as men having sex with other men. In that case you might say it’s an illness of gay and bi-sexual men — however, women are a very fast growing percentage of people living with HIV, worldwide and also in this country; and we have to think of the risk factor to people of color; the proportion of people of color in the state who have HIV far exceeds the percentage of their population in this State. So maybe there are 3% in the state’s population, but these are 18% of the people with HIV. So you see that the epidemiological data goes on with all the social justice concerns that we have anyway. For people who are excluded from the resources of society are also the people who are more likely to contract HIV.
Phil: Okay, a color basis, a social stigma, and a community resentment. Is that just in Vermont, or in the US or everywhere?
Susan: When you think of it internationally, Phil, you know, is AIDS the scariest in Africa among people who are themselves excluded from many of the benefits of the C21st? Or in other areas of the world, and is compounded by denial – that, it’s not me, it couldn’t possibly be me. It couldn’t possibly be my husband, my kid, couldn’t possibly be the people next door. And yet when you normalize it and help people understand that it’s all of us together, then we are going to make some progress in the public health sector in preventing the of HIV.
Phil: And that’s the interesting sociological background to the problem. And I suppose it is a constant despite on-going education, people know more or less about HIV. In terms of your operations, you have described a little about the services you provide, and we will put up an article together for your non profit of the month appearance, and as comprehensively as you like, but in terms of funding, how does that work from individual, state and federal sources?
Susan: We have a wonderful community base of funding of individual donations and major gifts, and a couple of special events in the year; the Walk for Life is a big one. You probably know Shirley Squires who does a great deal of fundraising for us. Personally, her son Ron died of AIDS, he was a legislator…
Phil: I knew Ronnie.
Susan: Did you?
Phil: Yes. I actually met him in the Mole’s Eye where we would go to play chess.
Susan: No kidding.
Phil: Yep, playing chess with a bunch of chess cronies. We’d go down there and have a pint, and one pint actually improves your chess quite a lot, but two…
[laughter]
Phil: This was on Friday nights, and Ronnie would come in about 9 o’clock, just back from Montpelier, and he didn’t act like a politician as such, but just tell anyone there what it was like and what was going down in the capitol. He was just a man of the people, which ain’t nothing, as my wife is like to say. Great guy.
Susan: He was. Shirley helps keep his memory alive by fundraising and this Walk for Life, almost in honor of him, of course it’s for everybody. Shirley is really a leader in that regard. In addition to that we do have federal and state funding, mostly federal funding, and the prevention programs that we run are supported by the Center for Disease Control and Prevention, which of course is federal, and it’s a very interesting set of programs that we have, (1) for gay and bisexual men builds community among gay and bisexual men here, through social events, through a newsletter, through workshops — really a grassroots program. The women’s program also provides workshops, substance abuse treatment centers, wherever people like this are. And we also have this testing program which we promote, so they can know their status by being tested, and where we rarely have a positive result, but if we do people can then get to medical care and other help that they need.
Phil: Other than the CDC at federal level, what does the state of Vermont provide to you — Is it for a particular kind of work you do, or something per capita?
Susan. They provide money for direct social work services, and give money to help pay for people’s fuel, for their rent, their transportation if they have to go to the doctor and they don’t have a car, and getting from here up to Dartmouth for example, which can be quite a challenge. There is a bus if you are well enough to take it. There is a certain amount of money that we just pass through directly to people, it is not much, but certainly helps out from time to time. Some of that money also pays for the social work services. We have a wonderful food program since we are in partnership with the Vermont Food Bank, which now that they are down here is wonderful. They give us frozen meals that are designed for people with compromised immune systems, and it’s all free, then we have frozen meats and vegetables. There is also a lot of stuff at the food bank that we can just run up there and see what is available. It’s a wonderful resource.
Phil: I have been talking with Melinda Bussino a couple times recently…
Susan: Yes.
Phil: … to cover a couple of things. After your run here as non profit of the month, in December and January we will talk about shelter, and Melinda has been saying that it is not a particularly happy situation at the moment in terms of accommodating those in need, and in food, she has gone from supplementary to crisis levels of provision. She doesn’t think we have hit bottom yet, and she says things like the people who used to come in and give us $25 for Christmas are now coming in for food.
Susan: That is one of the reasons we are happy about the food program. If nothing else it takes some burden off the others in the own, so that the people we serve, the 35 people in this area, and another 25 people over in Bennington, don’t have to go to Melinda, they can get their food here.
Phil: And with more security for their health since she says sometimes they candy bars and bread, which is fine if you like candy bar sandwiches.
Susan: That’s not funny.
Phil: Yes, It’s rough now, not improving. I speak from considerable ignorance about AIDS/HIV, though I did know Ronnie and other gay people, but I don’t know anyone with AIDS at the moment, or anything much about the treatment of the disease — can you tell me please, how efficient are current medicines and is there some movement anywhere that you could place your sensible hopes in that would improve them further? Is this a way to look forward or is it more prospective to look at prevention?
Susan: What I see out in the world is — and I think you have just hit on the only two possibilities — one is a vaccine, and their are trials going on, though they have not hit on the right combination yet; one of the problems is that HIV, which is the retro-virus that apparently causes AIDS, mutates so easily. That’s all about a vaccine, and it’s hard to design a vaccine which targets a particular, but doesn’t harm other things. I think the vaccine work now is aimed at, not the retro-virus itself, but what it does in the cell — I am not a technical person about this, as might be my husband — so, I think there are hopes for that. I am not sure there is any immediate signs that there is going to be a breakthrough tomorrow, but certainly people are working on it, people have to work on it. It is an international and worldwide epidemic that is devastating.
Phil: Where would you say research is going on — from the WHO, or in Great Britain or here in the States?
Susan: I’m not sure. I would have to do that research myself.
Phil: Understood. Nothing at this level you can be involved in.
Susan: UN AIDS for example is a wonderful site to find out stuff about that. And the [WHO] World Health Organization, yes. I know somebody at Genentech, one of the private pharmaceutical companies — of course if any private company found something they have an interest in doing that, if they would succeed. That’s one area that I know about; now the prevention part is very interesting — people have found that the more community based you can get the better off you are going to be. And the more you can speak to people about their individual lives, and their individual relationships with others, the better. Poster sessions or lectures, we have done that, so people have a cognitive understanding — but the chief factor is behavior which is a whole ‘nother question.
Susan: So, we had our friends at SIT [School for International Training] intern last year, a woman from Uganda, who described to us that in Uganda whole villages were joined together in groups to talk about AIDS. She thought we did a poor job here in talking about AIDS since we didn’t have it at that level. Of course, in this country people think, I don’t need to think about that, that’s something which happens somewhere else. In Uganda it’s right there all the time. People becoming ill, children being orphaned. There is an organization here in town, parenthetically, that you might be interested in, called CHABHA; CHildren Affected By Hiv AIDS. They have a website and an officer here at St Michael’s Episcopal church, and they do work in Rwanda where they go in and find people who are already active in the community, and say ‘how can we help you?’ Do you see what I mean, they don’t set up institutions, their whole idea is to set up connections within the community by people who are already excited and energetic, and often it’s young people. Often teenagers. They can have lost their parents and are now responsible for raising their children, their brothers and sisters. In this country we have found that to be true also — if we can be invited into a home and speak to six women who are neighbors or mothers, sisters, daughters, cousins, and talk to them about their lives — how HIV is transmitted, the things that help people change their behaviors. Or the things that are challenges to changing behavior — for example, if you are a woman in a situation of domestic violence, and afraid to ask your partner to use condoms, what can we do about that? We are talking about very personal, intimate things that are real and genuinely influential in people’s lives. That’s the sort of thing which is going to work.
Phil: A big confidence, education and communication task. Do you think the Ugandan model could be deployed in our area?
Susan: What I just described about going into people’s homes is what we do now. And the program I described about gay and bi-sexual men in the community, that community supports healthy behavior. Strength of community is what we are calling upon, and it’s very effective. Suppose you were living in a city where there were a lot of young gay men, and you felt at risk, one of the things you might do is help build a community behavioral norm-wise for safe sex. You might be playing volley ball but that’s part of the same thing. Am I being articulate?
Phil: Yes, it makes sense. In terms of prevention there is educational prevention, but you also said that one of the root causes may be poverty, and even though the whole town may be tuned in to relatively serious conversations of this sort, (this will be archived and remain available after initial publication), a lot of people don’t have access to any decent internet sources, or even if it’s technically available, their poverty conquers access to it. My daughter is doing a PhD lacking only her final dissertation now, in politics but she has a side-line or specialty call ‘environmental security’, which studies the effect poor people have on their environment, social environment and even environment of their own body. She says that in terms of personal disease or malfunctions, if you are poor you make it worse.
Susan: Exactly.
Phil: The effects of personal poverty become a causal factor in social health. Is HIV/AIDS increasing in our area by a significant amount.
Susan: Certainly, over the years that we’ve been here we’ve gone from 12 to 70, and we just had 5 new clients in Bennington in the last month, an unusual number. We really don’t know how many people out there we are not serving in the area. Some surveys say that 1 in 5 people who have HIV don’t know it. If that’s true there are another 10 or 12 people in the area who have HIV who don’t even know they have it. One of the things we definitely need to do is get the word out through every medium we can think of, to let people know again about preventative testing. The other thing about testing is to link to something you said earlier about people living in poverty; we can go anywhere, people don’t even have to come here, as long as there is a room with four walls, ceiling and a floor, we can come and do testing; again it’s an oral test, not drawing blood, and people can get the results right away.
Phil: It’s free, it’s confidential, you can go to them, and it’s painless.
Susan: Yes, though confidential implies something about information being held, we don’t even ask for information, so that’s a difference between confidential and anonymous, you don’t have to say anything about who you are, this is anonymous. That is helpful to people because of the fear that someone else will ‘know’ your status, or even that you asked; there are women in domestic violence situations who don’t want to get their blood drawn because then they have a little band-aid on their arm and then they can be asked by an abuser partner what that is, and why are you doing this? Therefore the oral test has a lot of advantages.
Phil: Untraceable, quite. We are at 27 minutes, and we don’t have to stop talking at 30 minutes, but I usually suggest 30 to 45 minutes makes for about a 3 or 4 days presentation, and many people will devote 10 minutes a day on-line to serious reading, because these are — I don’t like to use the word ‘adult’ which has come to be lubricious and/or juvenile — so, for grown ups these are serious issues addressed by other grown-ups who are not guessing about anything, but speaking from 30 or 40 years well digested experience. In our culture we are not used to taking in material of that quality especially about difficult subjects.
Susan: Right.
Phil: Susan Parris at Hospice said pretty much the same, it takes a while to really get the picture. And is there a part of this picture that if people are willingly to seriously take in, and we haven’t raised yet, that you would like to address?
Susan: Well, in many ways I think it’s what you said; when you were describing what your daughters work was about — the idea that there are root causes is something that is very clear to us, and it’s clear that we can’t attack all of them just ourselves. What we do is a piece of the larger puzzle, and we support Melinda at the Drop-In Center in every way we can, and we support Morningside Shelter in every way we can, and work with people who provide substance abuse treatment, we partner with other people at the food bank to provide food to the community, and we are as active in every way we can be. Specific things that we do to provide healthy community for gay and bi-sexual men, and to reach women at risk, and to provide social services to those living with AIDS, that’s what we do best. We feel like we are a specialty that is just a part of this much larger picture, and we never ever ever want to forget we are part of the bigger picture.
Phil: As if you are saying it is a community problem which needs a community resolution.
Susan: Exactly.
Phil: I have heard some of the people you mention say similar, and how to cope with people, more or less, and sometimes it less. Very hard on your own to get to the roots of it and find a way to deal with it, and it is likely to be a long term thing. And your work is even a different kind of work that some local agencies do — as Susan Parris of Hospice says, we are used to dealing with situations we can solve, often by technology, but there are some situations where you just can’t fix it. Culturally we are uncomfortable with living with things we can’t fix, it’s not even talked about much. And this situation is more on the care side and a little more female than normal.
Susan: [laugh] Sure, I understand what you are saying.
Phil: No matter how good the engineer is, this can’t be fixed. Some things have to be suffered.
Susan: I have to say that I think that none of us would do this work unless we thought we were making a difference.
Phil: Susan P would agree — sorry to interrupt — she avers that Hospice is about living the life you have.
Susan: I am in the Hallowell choir, so I know.
Phil: I also interviewed Kathy Leo. Remarkable.
Susan: Did you. And yes, she is amazing.
Phil: Of course, I needn’t tell you anything of all this, except that we are speaking to a public in a way, and I think this idea of caring is a point worth making.
Susan: I agree. We can look at those we serve, and ask them about our services here, and we can get good news from that. That doesn’t mean that we fixed anything. I like the way you put that. But we continue to make a difference in the world that is a rewarding and satisfying part of our work and we share with those other partners we have you have mentioned and profiled, and that is our community, which keeps us going as well.
Phil: You add quality to people’s lives, and the subtitle of this magazine is ‘quality of life, spirit of place.’
Phil: What would you say something to the citizens of our bio-region, as I like to call it, the rural area to which we are a hub town, what would you like to say to people about their fear of HIV/AIDS, which is perhaps a quite rational one, and about people who have AIDS?
Susan: People living with AIDS are essentially like people living with any other chronic illness, like diabetes or heart disease, and there is no reason to fear them. They are your neighbors, and your friends and your family members, and they are a part of our community just like anyone else. There is nothing about someone with HIV to fear. And that’s why we are all working together.
Phil: Are there services for families as Hospice does so that they can get a better sense of what it’s about and how it’s going to be.
Susan: Sure. Marguerita and Cynthia, the people who work directly with folks, of course talk to families, and often families have kids, what about that? What about people who live far away and folks who are worried about family members and who need support to get here. We definitely extend to family care as well. Of course, people live in families so that’s what we do.
Phil: And good to say so.
Susan: Yes! Good to say so. Thank you, Phil. You are good at this.
Phil: Well, I am off the hook in a way, have no responsibility for content, so can stand back a little — but I don’t really interview, and always consider it a conversation. Before I walk in the door I empty my mind and release you to say whatever you want, not what I want to hear. Some people only talk about themselves, not the job, but this is interesting too since they speak from personal values and a reader can glean who is speaking, the quality of the person. That too is convincing and there is no way of doing that by interview technique. When sixty year old people say they feel at home here in their work and in the town for the first time in their lives, though they have had carears elsewhere, they have never been as comfortable in their lives. George Williams who used to shrink down there in the Boston area said that he looked around and decided he didn’t want to grow old with these people.
[big laughter]
Phil: I don’t think it’s a fantasy or wish-fulfillment that there is something about our town which is a sense of conscious community — last week Jon Potter of the Reformer summed up by saying that more than any place Brattleboro reminded him of an intentional community. I think since we need community solutions to difficult problems, this is well worth noting.
Susan: Interesting, yes.
Phil: It is one incredible family, isn’t it?
Susan: It’s wonderful. I think of it too as not just the human services community, but the legislature. Like I can call up my Rep., or I can call up Peter Shumlin, not to be political about this, but I can call up whoever I want to talk to. And they will call me right back — that is remarkable. Any kind of influence we might have through the legislative process is also very unusual. It is not really what you were saying but it does have something to do with the scale of things here.
Phil: They are not exactly remote outsiders in limos.
Susan: [laughter] Exactly.
Phil: They have the same slightly beat-up Subarus as we do. Talking of cars, are we at a good place to park the conversation?
Susan: I’m comfortable, especially since I know I can edit it. Are you really going back and type this out?
Phil: Up to 30 words a minute!
Susan: Wow. I’m impressed.
Phil: That’s the clerical part of the job which keeps me grounded. And I get to hear everything 2 or 3 times. Okay, so in addition to this conversation, we can partner it with your own text as non-profit of the month for November, and I will archive both so that the material remains accessible for ever.
Susan Bell, Aids Project of Southern Vermont
April 26, 2013 7:31 AM