Proceedings of the panel on
GENDER, SEXUAL ORIENTATION & HIV
at the 1995 Women in the Law Conference
May 5, 1995
Introduction by Francisco Valdes:
Welcome to the program on Gender, Sexual Orientation & HIV of the 1995 Conference on Women in the Law, which is organzed every year by the State Bar of California Women in the Law Committee. This particular program is sponsored by the State Bar of California Committee on Sexual Orientation Discrimination (CSOD), which the State Bar Board of Governors commissioned in 1993 to study and address sexual orientation legal issues. As the title of our program indicates, the focus today is on how HIV affects the social and legal interests of women, both due to and regardless of sexual orientation.
Since 1981, when the pandemic dawned, public attention and policy has focused primarily on gay male populations, and this primacy continues today on the whole. Yet the most recent data tells us that women and children--and especially those of color-- tend to be acutely and increasingly at risk. To consider how current social realities and legal rules and policies regarding
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HIV may be better understood and aligned, we have with us today four panelists to offer a rich variety of perspectives on this subject. After their presentations, we'll have a question-and- answer discussion period.
We'll begin with Rhonda Hase, a legal worker who has lived with HIV for several years now. She opens our program with a concrete view of the way(s) in which HIV affects the social and professional lives of women. Next will be Gina Facen, a case worker at the Lyon-Martin Women's Health Services in San Francisco, to provide a perspective on the subject that is essential to bridging the gap between theory and practice. Eileen Hanson, the policy director at the San Francisco AIDS Referral Legal Panel, then will focus on current developments and issues in the law, policy, and politics and woman-to-woman HIV transmission. Finally, Linda Allen, who has practiced in the area for years and formerly was the legal director at the AIDS Foundation of San Diego, will close the program with a practitioner's view of these issues.
Presentation by Rhonda Hase:
As Frank told you, my name is Rhonda and I am a HIV positive. I have been HIV positive for a little over twelve years now. I have known I've been HIV positive since June 1st of 1990, so I have known for almost five years.
It's been a real interesting road ever since I found out. When I first found out I working in a law office in Hayward, and it was a very small law office, very family oriented, and a lot of the women there that I was working with, the support staff, etc., one woman was had just had a baby and most of the women there had children. So my issues about disclosure were staring at me in the face because I didn't want these women to be afraid of me. Yet, I didn't know a lot about this disease, as I had just found out myself. So I talked with my office manager, and basically we (the office staff and I) had a conference in our conference room, and I told everybody there that I was positive. And I was very happily surprised with the result. Everybody was very..., were very good and very supportive. Everybody asked questions, had a lot of questions for me and I was able to answer a lot of them and I was able to get a lot of information for everyone. Basically our office policy regarding people with HIV kind of formed as we went along, on a day-by-day basis.
The treatment for me, I was lucky, I had been working there already for about four years, and so I knew everybody and we were all pretty much a big family within the firm. So it was very open, I wasn't afraid to tell them. Unfortunately, because of the recession, I was laid off from that law firm and had to look for a job elsewhere.
The next law firm that I went to wasn't, it was more like... very much factory kind of work and I chose not to tell people there and it didn't present a problem because my health has been
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pretty good so I haven't had a lot of medical issues, I go to the doctor about every three or four months for regular checkups and blood tests and that kind of stuff. I have to see my eye doctor about twice a year because there is a higher risk for glaucoma and different kinds of issues for women as far as Hiv and Aids. I see a gynecologist three times a year because women are more prone to yeast infections, cancer of cervix, that kind of gynecological problems. So I have to go to a doctor a few more times a year than most people do, which is kind of a pain, but other than that I'm basically pretty healthy, knock on wood.
I chose to leave that firm because their type of work, it was just, I am a paralegal and I wanted to do paralegal work. I didn't really want to do word processing. So I looked around and found a very wonderful firm that I am at now and my boss is here with me.
I worked there for oh, I guess it was about a year and a half before I finally disclosed to my boss that I was Hiv+, and the reason I did that was mainly because I started having a lot of doctors' appointments during the month of December. What had happened was I went in for my regular check-up and my t-cell count was down to 120. Which, the t-cells they use, your T4 cells, they use as an indicator on when they want to start you on preventive medications such as AZT, DDI, DDC, and other medications to prevent pneumonias and other infections.
Most normal people, or I guess people who aren't infected with the virus have anywhere from 800 to 1200 t-cells. So 120 is pretty low and they wanted to start me on septra as a preventive against PCP pneumonia, and I started taking the septra, and about a week later I developed hives all over. So I was allergic to the septra, so I had to go back to the doctor, and then she gave me another medication called dapsung, which if you are allergic to septra, they go to this medication. Well, in about a week or so later, I had hives again. So I had to go back to the doctor again. It was pretty apparent at the time that I needed to tell my employer something. And a lot of times, people in my position, and I know a lot of women who do this, just tell their employer that they have cancer because that's a more acceptable illness than Hiv. I didn't think I would have...I never thought that I'd have a problem telling my boss that I was Hiv+ from a personal aspect because I never thought that they would have problems with it or anything. The problems come in when I go to work at a place, I want people to take me based on my capabilities. I don't want people to worry about, well, is she going to get sick later, that kind of stuff. I want them to know that I can do the job and that if I'm not able to do the job, then I wouldn't be here. That was a lot of the reason for me not disclosing fairly early.
So then when I did disclose, it was sort of a big relief, actually, because it was okay now I've got this out in the open, and basically now our office policy is day by day. The only thing that we did have that is probably a little bit different, but everybody probably should have, is in our earthquake kit we have gloves, the regular surgical gloves, so that in case
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something should happen to where people might have to treat me for any kind of medical emergency where I am bleeding, that they aren't exposed to my blood. That's basically the only addition, universal precaution, that we have really taken. I let my employer know that I have a doctor's appointment for this or that, and I try to schedule them either early in the morning or late in the afternoon kind of thing, so I don't miss too much work. I am not at that point yet here I have to miss a lot of work because I haven't been sick or anything. I get tired, and that kind of shows every so often. I get probably a little bit more tired than usual, which is kind of hard to explain. Because when you say tired, you just think, oh yeah, well everybody gets tired. But it's hard to explain.
I used to take AZT and I had taken AZT for about a year and half until I became sick from the medication. I would go to bed at six o'clock at night and wake up about six or six-thirty in the morning to go to work and feel like I hadn't gotten any rest at all. I would have to call in sick to work because I couldn't make it because I was just too tired. I had to stop taking AZT. After I stopped, I regained alot of my strength and bounced back a little bit. My t-cells were able to go up and everything.
Now, with my t-cells being so low, since I am allergic to septra and dapsung, I am going to have to start taking or doing another type of treatment - aresaol pentamimine - once a month. Hopefully I won't be allergic to that, as well.
Basically life for me, in general is good. I go on, I work, I have a 14-month-old daughter. My husband and I are doing quite well, I mean I still have the average, run-of-the-mill stuff everybody else does. For me, I don't dwell a lot on this. I do a lot of volunteer work surrounding Hiv and Aids, but that's more for me, to help me cope and also to take away the stigma of this disease for women, for everybody with this, because it is not just a gay white man's disease. It affects and infects anybody. It's an equal opportunity disease. One of the fastest growing groups that is contracting the Hiv virus is women, especially women of color. Another big growing group are teens, kids can get this also. So it's very important to me to speak out to groups like this and other groups. I do a lot of speaking to high schools, to junior highs, church groups, etc. I have spoken to several doctors' and nurses' groups because I want everybody to know that while yes, I am Hiv+, but I don't let this disease rule everything in my life, it's my thing to deal with. For me, everyone has got something to deal with and this one thing is just mine.
I want everybody to know that it's very important that people are educated about this, that they do learn about it, and that they need to learn about it. Thank you.
Presentation by Gina Facen:
Hi, I'm Gina Facen and I'm here representing Lyon-Martin Women's
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Health Services in San Francisco. Lyon-Martin is a great place for women. We see lesbian, bi-sexual and transgendered women as well as giving special outreach to older women, low income women, and women of color. Because we actually give services to all these women I have had the experience of working with a largely diverse group of HIV+ women. Let me give you a few facts. Aids is the fourth leading cause of death for U.S. Women. It's the first leading cause of death for black and hispanic women. These are women between the ages of 13 and 44 this includes a large number of teenage girls and young women of childbearing age. It's important to remember when newspapers and media reports a decline in HIV infection amongst certain groups of people they are not being clear that these groups do not include women. Our numbers are growing at an obscene rate. I realize that this not easy for some of us to hear but it's this same kind of denial that keeps women from getting the information that's available and could save their lives. We won't see a decline in the numbers of women with HIV until we are willing to talk about sex and what that means, and drug use and what that means, and educate our daughters, and our lovers and our sisters.
As a case manager at Lyon-Martin I assist HIV positive women in continuing to live with HIV. A lot of these women were infected through sexual contact and drug use. I assist them with everyday worries such as food, shelter, and clothing first. And of course there is a need for education in regards to medical care, safe sex practices, or help with substance abuse issues and/or mental health issues. These women are sometimes homeless or borderline homeless. They all need a lot of love and understanding. The majority of these women do have a need for legal services and it's usually upon intake that I refer them to the A.L.R.P. in San Francisco.
The A.L.R.P. has been one of the agencies that has made my job easier. Arrangements for legal services have included, wills, power of attorneys, divorce, entitlement cases for SSI, housing issues. The services given by volunteers is wonderful. Lawyers have been willing to come to client to get there need met and this is important for some who feel intimidated by fancy office buildings and executive atmospheres. The manner in which they have dealt with clients has been warm and attentive. On behalf of the clients Lyon-Martin has referred to A.L.R.P. Thank you. The issue of power of attorney is a difficult one to deal with, clients are reluctant to initiate this kind of thing because of the emotional stress of living with a fatal disease is once again reaffirmed, it is also how some have chosen to disclose to family members, which is very difficult. Lyon-Martin has worked with an outreach worker, Marina s., At ALRP who comes to our clinic once a month so it is very convenient for clients to access the services at a familiar place.
My knowledge of law is very limited and the need for legal services for HIV positive women is much needed. Clients have asked that present a few suggestions as to what they would like in addition to the already available services. The first would be a broadening on legal services to include criminal law. There
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is a need here as much of the women I see who have this kind of legal need if they disclose to court appointed lawyers they have been ignored, shunned and shown indifference in regards to health considerations. So services are also needed in this area.
They've asked also for panels to consider a corporation of some sort to include assisting HIV positive women with preparing for court dates and jail releases. I don't know what that would look like, but this is what they asked I relay. Something else that would be helpful in reaching women so that they could access services more easily could possibly be client orientations and inservices given at the agencies that women frequent for other services. This would give clients a chance to ask questions directly to a lawyer, or assistant so that they get answers and are in a familiar environment and a place they can feel safe to ask these questions. I thought this was an excellent idea and would also give service providers a chance to get more information also. The last was to donate any amount of time to HIV positive women's organizations so the continuing education of women would go on.
Thanks to those of you who donate time, money and understanding, and, thank you to "women in law" for inviting me to participate in your conference.
Presentation by Eileen Hanson:
Thank you to the State Bar Committee on Women in the Law and to the State Bar Committee on Sexual Orientation Discrimination for allowing and sponsoring this program, and thanks to all of you for being here today.
I am always appreciative when people make HIV issues for women a priority within discussions related to health. As women, we don't do that often enough and that is a serious problem given that AIDS is the fourth leading cause of death for U.S. women aged 25 - 44 and is growing at an alarming rate in women. The rate of AIDS in women increased by 9.1% between 1991 and 1992, compared to a 3.4% increase overall, and continues to increase at a higher rate for women than men. In 1992, it became the second highest cause of death for African American women between the ages of 25 and 44. It is the primary cause of death of women in this age group in nine cities. Over 50,000 women have been diagnosed with AIDS in the United States and over 100,000 are estimated to be HIV-infected. The 14,081 women reported with AIDS in the U.S. just in 1994 represented nearly one-fourth (24 percent) of the total number of AIDS cases ever reported among women. I am also appreciative with regard to the decision that HIV was considered an important enough issue for us to talk about in the context of the intersection between sexual orientation, gender and HIV. I believe that you can't talk about HIV Ä that we shouldn't talk about HIV Ä without talking about the intersection not only of sexual orientation and gender, but also of race and class. In particular, when talking about women these
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issues become ever more important as we look at the growing numbers, and as we look at the women who are most affected by HIV. Yes, it can be any of us but it is women who are of color, who are using drugs, who are on the street, who are poor, who are homeless, who are incarcerated, who are those most affected by and infected with HIV.
What does that say to us about the resources that we can count on to take care of women in the future? In the beginning of the epidemic, when the epidemic was supposedly affecting mostly gay white men, and we were dealing with tremendous issues of homophobia, it was tremendously difficult to access the resources Ä both financial and voluntary resources. If we thought it was difficult to find those resources, what is it going to be like to try to find the resources to take care of women, of poor people, of people of color, of people using drugs, of people who are incarcerated, of people who are homeless?
I'll tell you Ä we're trying to access those resources and we're not succeeding. We are fourteen years into this epidemic, and people are saying, "I'm tired. I can't give more time. I can't give more money. And those populations being hardest hit...well, I don't really know how to help them." Granting sources are interested in funding other projects and individuals are interested in seeing their dollars go somewhere else after all these years. It's an understandable reaction. However, when have women's issues or issues related to homelessness or drug use ever been heard and understood and taken seriously, let alone been popular to fund? So it's critically important for us to commit to continuing the fight against AIDS as we see resources dry up. We must find new resources to supplement what we can hang on to and to supplant what we are losing.
I came to AIDS work about nine years ago specifically because of the intersection of race and class and sexual orientation and gender. I know that many lesbians came to AIDS work in the beginning of the epidemic for that same reason. We have continued to be in the fight against the pandemic specifically because of that intersection. Lesbians brought to the fight our history of political activism, our organizing skills and our ability to understand the different ways different communities are affected by HIV, based on their relationship to the discrimination of race, class, sexual orientation and gender.
Often what that means for women is that HIV is just one more problem on the list of many women face in today's society. And, in fact, it's not even the top problem on the list. But it is one more thing to grapple with in addition to facing racism or homelessness or poverty or lack of access to healthcare in general, or the struggles inherent in raising kids, or whatever else it might be.
It's important to bring those issues to bear when we analyze the effect of HIV on women who have sex with women. However, one of the things that gets left out when we talk about the intersection of all these issues for women is the issue of sex. You would think that we couldn't talk about HIV without talking about sex, but somehow we manage to do it over and over again.
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And when it comes to women who are with women, we really can't deal with talking about sex.
For starters, woman-to-woman HIV transmission is a great expanse of silence. Women are absolutely frightened to talk about it and men are generally unable to take it seriously. We do not talk about it. That is the truth of where we are in 1995 Ä fourteen years into the epidemic. Just now we are beginning to see a crack in that silence. But that crack can't be broadened to split open the subject until we talk about sex Ä the sex that women have with women. But that's extremely difficult because we all know that lesbians don't have sex. First of all, women don't have sex. Women are only sexualized when they're in relationship to men and often, then, it's in the context of the virgin mother/ whore analogy. Other than that, women aren't sexual, so women who are with women are certainly not being sexual.
In addition, lesbians certainly don't sleep with men; certainly don't shoot up; certainly don't exchange drugs for sex; certainly are not homeless; certainly are not of color. So, therefore, why would we talk about lesbians in the context of HIV? Society doesn't really acknowledge that we exist except in the context of Newsweek's coming out for us in 1990 and then again in 1995. (And who we are, in all our diversity, was of course mirrored on the cover of Newsweek.) Other than that kind of singular approach to lesbianism Ä as a phenomenon, albeit a media mainstreamed one Ä we aren't acknowledged as individuals and communities to be taken seriously.
One of the real dangers of that approach is that our relationship to HIV hasn't been taken seriously, in part because we're not real people. While it is accurate to say that discussions related to the risk of HIV for lesbians occurred from the beginning of the epidemic, it is also necessary to acknowledge another reaction to the issue. While lesbians argued with lesbians over woman-to-woman transmission and were simultaneously accused by gay men of attempting to divert the "real" epidemic to a "peripheral and wholly potential" problem, the right-wing had its own unique approach to HIV. When the right wing was saying (as they sometimes still continue to say) that AIDS is visited upon gay men because of their "promiscuity" and their "outrageous sexual practices" and that they therefore "deserve" AIDS, some lesbians and some gay men were able to say, "well, gee, lesbians don't seem to be getting HIV, so we must be God's chosen people, right?"
We were able to take that hit, that terribly painful, horrible attack on gay men and turn it around in defense of the combined gay/lesbian community and say, this is obviously disgustingly ignorant, ridiculous, mean-spirited propaganda that can be refuted. And the right had no response.
Unfortunately, that approach has come back to haunt us. Society apparently believed that we weren't at risk for HIV and some of us started to believe that as well. So now what we are trying to do is undo some of the mess that was created out of that thinking and correct some of the things that we've come to
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believe in our own communities.
As lesbians in this culture we suffer, of course, from the same lack of power and resources that all women do, but we also have to grapple with how to navigate our health and our social and sexual experience in an environment that is ferociously heterosexual and heterosexist. Therefore, because we have no voice and no visible presence, we have no power, really. And no cover of Newsweek gives us that power. Because we don't have that voice and that access to power and visibility, our issues and our relationship to HIV have been submerged. That is a very serious situation because it's kept all of us ignorant. It's kept us uninformed and thus, we have not been able to do the educational work in our communities that we desperately need to do to keep the numbers of women who partner with women low.
Now, at least, there is beginning to be more general acknowledgement that the behavior of women who identify as lesbians is an issue to at least be seriously explored by those who are concerned about the steady onslaught of HIV. One of the indications of that acknowledgement is the recently convened meeting by the Centers for Disease Control and Prevention (CDC) on woman-to-woman transmission. It took many years of tremendous efforts on the part of activists to get to the point of this meeting Ä the world's first discussion at a policy-making level - some fourteen years into the epidemic.
As exciting as it was that this meeting was called, it was also exciting for a second reason, which is that the meeting was not held in the context of "let's talk about whether there is an issue of transmission between women," but rather, "let's talk about what to do about the issue of women-to-women transmission."
So, there was acknowledgement going into the meeting that we have a problem and collectively, we need to figure out what to do about it. Women who brought a community-based perspective joined together with the CDC perspective and, with respect for one another's expertise, created what became a powerful meeting.
The people in the April 1995 meeting were CDC staffmembers who are researchers, who track numbers and do surveillance, who are policy planners and are people who know HIV issues in general. They were not people who necessarily related to woman- to-woman transmission, but people who have worked on HIV issues historically and currently. They were very open to hearing from experienced women who know woman-to-woman transmission issues through our own personal lives, with our friends, lovers and clients, and within our jobs dealing with women who identify or behave as lesbian or bisexual. Eighteen women Ä many of us community-based Ä were invited to attend, based on our expertise regarding the issue. As President of the Women's AIDS Network in San Francisco, I facilitated the meeting. Unfortunately, women living with HIV were sorely underrepresented, with only one self- identified lesbian with HIV included, despite efforts of activists to include their perspective Ä only the most important, in my mind.
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A crucial part of the meeting was that Dr. James Curran, Associate Director of HIV/AIDS for the CDC (the highest position within the CDC with regard to HIV), met for two hours with us to review the agenda that we had developed to present to the CDC. He made a number of public commitments as to what the CDC is willing to do regarding woman-to-woman transmission. The fact that Dr. Curran spent two very public hours on this topic certainly suggested that the CDC was willing to begin taking the issue of woman-to-woman HIV transmission seriously. In addition, following the meeting, I received a call from the White House Director of AIDS Policy who was following up on the meeting and wanted to know what their office could do because they were interested in the issue and wanted to help. So I think we're now in a place where at least the dialogue has started. We still have a long way to go, but at least it has begun.
There was general acknowledgement at the meeting in Atlanta that this work cannot be accomplished without framing the issue within the context of an analysis that includes class, race and economics and without addressing the complexity of the lives of women who partner with women. The different ways we partner and the diversity of our risk must be recognized, as must the fact that lesbians exist within Ä and identify with Ä many different communities. Thus, prevention efforts must be specifically targeted. Addressing woman-to-woman transmission will take creative energy that brings together the best of our scientific efforts, our research skills, the approach of community-based organizations and our grassroots experience.
With regard to women who partner with women, we have, in some cases, not very good data and in most cases, very little data. So it's very easy for people to say woman-to-woman transmission doesn't exist. Since we base funding on numbers of those infected and thus potentially infected, a community must produce numbers in order to receive funding from government or private sources. Of course, lesbians are constantly in the position of saying that while we don't have the proof of numbers to show that HIV is a problem in our communities, the fact is that it's because no one's taken woman-to-woman transmission seriously enough to track the numbers.
I believe that the numbers of women who had no other risk factors for HIV transmission than being with another woman are low. However, I also believe that the numbers of women who partner with women and have, or have had, other risk factors, are much higher. So, while we have a great deal of very frightening anecdotal research with regard to lesbians infected with HIV, up to this point, we've been quite unsuccessful in getting dollars into the lesbian and bisexual communities to keep the numbers from going up. And if we're talking about preventing HIV in lesbians, we need the dollars to reach both women who are potentially infected and women who are potentially at risk. The education must be provided to keep the numbers down.
We must also explore how it is that we partner with women and the diversity of risks that we engage in. That really means that we have to look at behavior, in addition to identity. So we
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need to look as much at what women are calling themselves Ä maybe more so Ä as what behaviors they are engaging in. There are women today who still say "I'm a lesbian. So I sleep with men, so I do drugs, I'm still a lesbian. Therefore, I can't get HIV, right?" We need to strip away what people call themselves and say, if you sleep with men, if you're using drugs, if you're engaging in particular kinds of sex with women, there is a potential for risk. Let's talk about behaviors and let's do research on behavior so that we can understand what kinds of risks we're engaging in, what kinds of sex we're having.
And, we need to always keep the complexity of our lives in focus. We need to look in particular at the communities of lesbians and bisexual women who are most marginalized, women in prison, women in recovery, women on the street, women who are young, women who are transgendered, women who are the working poor.
Specifically, Dr. Curran agreed to take our agenda to CDC staff and assign items as appropriate. He also agreed to consult with other agencies, in particular the National Institutes of Health (NIH) on the research requests. In addition, he agreed to the following: 1) that a report on the meeting would be published; 2) that guidelines should be developed for healthcare providers on how to conduct sexual histories and how to fill out surveillance forms so that lesbians are counted (because generally women don't get asked if they partner with women or if they have ever had sex with women); 3) that CDC guidelines should be reviewed for heterosexist bias; 4) that a presentation would be made to the CDC's HIV Prevention Advisory Committee and that they should take up the issue of woman-to-woman HIV transmission; 5) that a woman-to-woman HIV transmission resource packet would be developed; 6) that future meetings with more community involvement (in particular, that of HIV-positive women) would occur; and, perhaps most importantly, 7) that more research on woman-to-woman transmission was needed.
Because there is such a lack of data and research and such a lack of surveillance related to women who partner with women, we spent a great deal of time on these two issues and I want to expand on them here:
With regard to research, we talked specifically about behavioral research and assessing the risk factors that women engage in. We also noted that we need to look at the intersection between HIV and STDs, sexually transmitted diseases, along with developing a discordant couple study Ä in order to educate couples where one partner is HIV-negative and one partner is HIV-positive. Women who are in those situations don't have a clue about what kind of sex to engage in since that kind of information has not been provided to them so they can feel comfortable being sexual in their relationships. Further, there must be case studies of woman-to-woman HIV transmission.
With regard to surveillance, we need to both increase our surveillance and understand how to do better surveillance of women who partner with women. We need to get at all the
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anecdotal evidence that we have from working with women that has not been formalized and documented.
The CDC employs what they call a risk hierarchy, and there is a great need to revise the risk hierarchy. What that means is that when a woman is tested and is asked a battery of questions about her behavior, if she says that she has had sex even once with a man since 1977, even if all her other sexual encounters have been with women, if she slept once with a man since 1977, she will be categorized as heterosexual.
So what happens then is that we have no way of tracking how many women who identify as lesbians because they are lost in that kind of a hierarchy. We also have no way of tracking the behaviors of those women who are then slotted into those various categories. So of the women who are in the heterosexual categories, or in the injecting drug using category, we don't know how many may or may not identify as lesbians but spend most of their time with women, including most of their sexual time, and most of their time in lesbian communities. If we had those numbers Ä which we could get, in part, by revising the risk hierarchy Ä we could target the critical preventive education appropriately. Prevention education needs to be specifically targeted with regard to behavior, it needs to be culturally sensitive, and it needs to go to communities where women who partner with women spend their time Ä to lesbian and bisexual communities.
Minutes of the meeting have not yet been distributed and thus, we do not have confirmation that the CDC is moving forward on this agenda. But you can be sure that those of us in attendance will actively follow up with the CDC.
The final word I would leave with those of you who work within the legal system is this:
There are many ways that you can support the work I've just described because the issue is still so closeted. Educating yourselves on the issue of woman-to-woman transmission; educating others; working with community-based organizations that do HIV work that is specifically focused on women; making your community-based HIV organizations accountable when they say they provide service and education to women (make sure their efforts really are appropriately tailored toward women and make sure they're not leaving out outreach to the lesbian and bisexual women's communities).
Additionally, working with women's health organizations and making sure they don't drop out HIV issues in their work with women, including a focus on woman-to-woman transmission; and critically important, using your expertise and whatever access to channels of power that you have to move this issue onto the front burner. Another very valuable way that you can use your analytical and research skills is to become involved in legislative efforts and work in the public policy arena.
As an example of the importance of public policy work, there
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is a strong move in this country Ä at both the federal level and with various states Ä to target childbearing women for mandatory HIV testing. While this issue is not germane to the information I've provided to you here regarding woman-to-woman HIV transmision, it is another issue where the intersection of gender and race and class is paramount. We're talking mostly about women who are HIV-positive and who are poor and of color who will be the focus of any attempt at mandatory HIV testing. Such an effort must be vigorously fought. And those who must take the lead are the women, as unfortunately, far too many Ä even within the HIV communities Ä see this as a women's issue and are not taking it on as "their" issue or as an issue that could ultimately become their issue. Again, we know the power Ä or lack thereof Ä of an issue that mostly affects women and women who are disenfranchised because of race and class and HIV status.
We'll need all the support you can muster to win this one.
I thank you again for your commitment to women, to fighting HIV, to keeping conscious about the intersection of sexual orientation, gender, race and class Ä as that critical intersection relates to the healthcare and very survival not only of individuals in this country, but to the health and well-being of our society.
Presentation by Linda Allen:
What we have heard already is really a strong statement about HIV in women and what the barriers and issues are. What I'd like to talk a little bit about - following up on Gina and Rhonda and Eileen are some of the legal issues that come up in the context of running a legal clinic for people with HIV and AIDS. And I want to challenge you: if you're not already involved this is a wonderful, wonderful way to do some true lawyering, some counseling and advocacy for people who really, really need it.
As you've heard from our other speakers, there are certainly a number of issues surrounding HIV that point up the neglect and almost avoidance of women's issues; I want to just run through some of the most critical legal areas for women with HIV, and then talk a little bit about one particular model of delivery of legal services. Several legal issues are of special concern to HIV-positive women.
One of those areas is one that's important, I think, for everyone; and certainly for anyone with HIV, especially women, and that is doing advance planning. Just as Gina was referring to, when she related that in her initial conversations with clients she mentions advance directives, durable power for health care, and so forth; then in later conversations, she ll talk about these issues a little more seriously. In the AIDS legal clinic setting where 25 to 30 HIV-positive people are seen in one evening for legal services, all provided by volunteer attorneys, probably 80% the clients need and receive basic planning
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documents. We want be sure that they have a Will in place, to be sure that they understood about advance directives, and to prepare those documents, and talk about them with our clients. As difficult as that is, we found almost without exception that when clients came back to sign their documents, they would comment, Well, you know, I really put this off or I really was put off when you brought it up, but I feel good that I got this taken care of. So we found that for many of our clients it was
empowering to take care of this piece of business that can be quite simply done but that brings up a lot of issues. Certainly, anyone can purchase an adequate printed form document, so it's not necessarily a magical thing that requires an attorney's expertise by any means. However, some of the counseling that an attorney can do around these documents (particularly if you have an interest in helping people with social issues), counseling is often done in the clinic setting. You may find as a lawyer who interviewing a client, that you are first person, or one of the first people outside that person's partner or family, who learns of your client s HIV status. We find ourselves as lawyers not only hearing about someone's legal issue but about their lives and about the most intimate aspects of their lives; we have the ability to both take that information and to be able to give something back in terms of, Well, you know I can't solve all of this for you and I won't pretend to think that I can, but here's a piece of business that we can take care of for you and you'll act on it and it's something you can do and some things I can do and it's done and taken care of. Pretty satisfying work to do that, and to feel that there are practical things that are helpful for clients. From the perspective of many of our volunteer lawyers, they would comment that their Monday night at the clinic was the most rewarding part of the week. And we do a lot of things in our practice that are frustrating and hard and sometimes challenging and sometimes not, but not always personally satisfying. So it's an opportunity for that kind of satisfaction as well.
To get back to which legal issues are of particular concern: First, preparing a Will for women, and especially for many of them, establishing a guardianship; we've been talking about guardianships for a woman with children, you know how to do that.
We might want to talk a bit about pending legislation, regarding joint guardianship that's particularly important in California; secondly, preparing a durable power for health care, explaining what it means and why it's important; third, talking about a declaration to physicians. All are fairly simple, standard documents that we consider as basic needs for all of our clients and something that can be pretty readily done.
Another legal area of concern for people with HIV is confidentiality: confidentiality in medical records, confidentiality in the employment setting, (and certainly Rhonda had a couple of what I would call success stories in the employment context). As we all know, there's some pretty awful stories out there, too, about people who have either voluntarily disclosed their HIV status or for whom it's been involuntarily disclosed, who have lost their jobs, who have been shunned at
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their jobs, who have had really unfortunate situations, and I've heard other good stories like Rhonda's. I have one of my own favorites about a young man who was a paralegal in a fairly good- sized firm in San Diego who didn't share his status for a while and when he did, much to his surprise, had a great deal of support in the firm and continued to work for quite some time. When he became too ill to go into the office and stay, he was set up with a computer at home, the ability to work at home on the days he needed to, or to come in later if he needed to. And in his final months it was his employee-colleagues who formed a support circle of friends who came and brought him food and spent time with him in those last several weeks. And I've always liked that story - but it shouldn't be the exception. That's what we would all hope to have, but unfortunately I think it still is exceptional. So if one is HIV-positive, issues surrounding confidentiality and what can be disclosed and when to disclose it are very real and important for all of our clients; it s critical to be able to talk with our clients about what the California law is on HIV antibody test-confidentiality.
The general rule is that you can't disclose HIV antibody test results without written authorization. There are a multitude of exceptions to that, and many different interpretations about how narrowly that could be construed. Does the prohibition apply only to test results on a piece of paper, or does it mean if I tell you that I'm HIV-positive you can't share it with the person at the other end of the table. There are a lot of issues around that. A lot of difficult stories still about what happens to people because of the stigma still attached to HIV. So we want our clients to be educated about how to make that decision, when is it appropriate to disclose, when it might not be, in what context do you want to disclose, what kinds of things do you want to be careful about, not only in the employment setting. In the health care setting, we want our clients to ask their physicians how do you keep your charting ;
where are you going to keep my test results ; who has access to my medical records? Is everybody throughout the office including the front receptionist going to know my history?
Will the receptionist say something when I'm called in to the doctor s office? Oh, well, you know, he's got AIDs, don't get too close to him and there are still these kinds of things happening.
We want our clients to be more educated about what the legal issues are, what their protections are, and where and when to be careful so that they can make the appropriate decisions depending on their personal situation. Certainly as I have alluded to there's a lot of discrimination still. I think it's improving. I think the more people listen and talk and share information about HIV (and I think all of us here this morning talk about it openly) the more people understand and really know that it's not them , it's us, and we need to talk about it and we need to know that and to share that information. Those of us who work or have worked in the HIV setting find that when we re away from that setting, we may still be surprised. When we are talking with a colleague or a friend and making some assumptions that the public knows a lot about HIV or talk about it and then we hear people
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say, Well, isn't that really awful work, or aren't you worried doing that kind of work, or gee, I don't know anyone who has HIV. I'm still shocked by that but it happens. I'm sure it happens to others besides me.
Again, it's the education that s critical. I think you have a special opportunity to do that sort of education. As lawyers we have special training that helps us understand what the policy issues are, understand about writing legislation and being really strong advocates of good legislation. We feel strongly about it and believe in advising people about their rights and helping them protect those rights. In terms of access to legal services, there are a number of ways in which lawyers can help people with HIV.
When we talk about helping women with HIV, as Gina pointed out, many women who are HIV-positive are facing so many issues in their lives, gender issues, race issues, class issues. So the idea of seeing or needing a lawyer for something that's going in their lives is a pretty boring one or even if it's there, it's pretty far down the list. And often people think of lawyers only in the context of litigation, so if I don't have a lawsuit, I haven't been in an accident, I don't have a criminal matter, what do I need a lawyer for? One of the things that we as volunteer lawyers in the clinic would often talk about when we go out to speak to groups whether community based organization or health department or a school or whatever it might be, is to help people understand that there are things that lawyers can help with that don't all take place in the courtroom. And that gets back to that idea of counseling and advocacy and educating people about their rights.
The model that we use in doing so, a really successful one, is the clinic. A very small handful of lawyers now, 8 1/2 years ago I guess, came together and decided that they wanted, as volunteers, to provide legal services to people with AIDS. And they talked to the people running the local AIDS project, and began one night a week, to see a few clients on a walk-in basis in a small room. It started with two or three or four clients. Some weeks there wouldn't be a client. It's grown to the point where there are 25 or 30 or more once a week who show up, no appointments, no eligibility requirements in terms of financial eligibility or immigration status or anything else, simply that the person be HIV-positive and no requirement that you bring your test results or a doctor's letter or anything else. You come in if you are HIV-positive and we ask what are your issues? It has grown since then, the panel of volunteer lawyers now includes over 200. Some of those lawyers are a small group who come every week and have come every week for years. Others say I can't come to your clinic Monday night but I'll take family law cases and I'll do whatever number of them I can depending on my practice and my time constraints. Others say I'll do home and hospital visits. I don't want to come to the clinic Monday night but call me when someone needs to have a Will done in the hospital or a Health Care Durable Power or someone needs a hospital visit and I'll do that.
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We were able to form a group of lawyers and a clinic which for a long time, for many years, operated without any paid staff at all. It was just four years ago that we had the first paid legal services coordinator and then only half-time, paid for 18 hours a week to run the Monday night clinic, to take cases, to keep the volunteer staff organized. Now we have a full-time legal services coordinator, a paid paralegal, and provide services to a lot of people, about 1300 each year, covering a wide range of cases. We don't do a lot of litigation, there isn't really the money to do it, nor the need. We ve found that litigation for most of our clients is not the most helpful or productive sort of result to legal problems, particularly for someone who is facing a disabling, life-threatening illness. We handled not only the basic estate planning, some family law issues, guardianships of course, landlord - tenant issues (which come up a lot), public benefits, SSDI/SSI or MediCal benefits for our clients; housing discrimination, a pretty broad range of issues, also including insurance issues. Our procedure is to connect client with an attorney who specializes in that particular area. We used a simple intake form which directed the client to check off boxes in terms of what kinds of issues would you like to talk to a lawyer about tonight? And a client would come in and perhaps check off a number of issues. They probably wouldn't all get resolved that night but they might see more than one attorney that evening, at least briefly to do an initial interview or be asked to come back next week so you can talk to someone about some of these other issues.
From the perspective of the attorney, it's a wonderful training ground. For new lawyers it s a way to get some interviewing experience which you don't always get, certainly not in a large law firm. You may be in a back room still doing a lot of research or working on one big case or sitting in on an interview that the senior partner or a junior partner is doing. So we had a wonderful training ground for young lawyers, and law students as well, who would get the opportunity to do the interviewing, to really assess the issues and to do that work. In the context of dealing with a client who is facing numerous social issues as well as their illness, to try to draw out of that what the legal issues are and which are the ones that we can actually handle and do something about. That s a challenge to any of us and certainly a challenge for a young lawyer. So I think that our students and young lawyers really appreciated that opportunity.
We also, as volunteer lawyers, spend a lot of time talking together. We talk after clinics, now I saw someone with this situation. There's a lot of that sort of networking that some of us had the opportunity to do in our practices and others don't get enough of that opportunity and really enjoy that, just talking about our cases, what do you think about this, who should we call about this, what's the best way to handle this without a number of problems, and we really should share our expertise in that way. For many of the lawyers it was an opportunity to see some of the problems that people face that they didn't see in their practices. Certainly if you have a business practice or work for a corporation, you don't see a lot of those real
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individual personal issues. I like that opportunity to see that and to deal with those problems.
The model in San Diego is to have a weekly clinic where clients can walk in. We never needed to advertise it. It was definitely a word-of-mouth advertising. It's pretty well known now the everyone who comes in that particular night will be seen no matter how long it takes. We could draw in enough volunteer staff, not only lawyers, but also paralegals, law students, a notary public, who think I can do something to help. I'll sit at the front table and go see the in-take applications and assign client to lawyer. I'll be sure that there are enough chairs in the room. As you can imagine, there is plenty of work to be done.
We had a few areas in which we really didn't advise clients, we didn't take on personal injury lawsuits, we didn't take on issues where there are plenty of lawyers available on a contingency basis, we didn't try to get into those. It was more a matter of handling practical issues in a practical and usually pretty effective way. It certainly is a real opportunity for lawyers to do satisfying work and also to share ourselves with our community in a larger way. It also gives lawyers an opportunity to do community advocacy and education. Once you start doing some of this work, you'll find that there are numerous places in your community where you are needed and asked to come in because you've become very quickly the expert on HIV. This role helps us connect with the rest of the community with people who are teachers, social workers, psychologists, counselors, or case workers/ case managers .
In my view the case managers are the people who really are the main assistants and helpers to our clients. They are the people on the front lines who listen to the stories, who say, okay, for your housing problem we'll call here, and this is the person who can help, and this is what they can do, etc. What we can do is help someone to sort out this terrible laundry list of problems and deal with it and get some very practical effective results.
I know that Eileen wants to talk a little about a legislative update so I'd like her to have time to do that and time for questions and I think we are beginning to run over. I want to just mention a couple of references. One is that there is a Women and HIV Conference in San Diego in the fall. This is a conference that is especially for HIV-positive women, although there are other people who make up the audience. It is the third time the conference has been done. There are four tracks over three days - September 22-24. The tracks are (1) direct services, (2) prevention, (3) life management, and (4) biomedical. If you have an interest in having a brochure sent to you, or you have clients who might like to know about it, and we do try to help HIV-positive women be able to attend, please sign up and I'll see that you get a brochure.
Finally, if you are interested in doing some AIDS legal work there are a couple of legal treatises and manuals that are
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particularly helpful. One is the National Lawyers Guild AIDS manual, it's a binder that's fabulous. I ve relied on it for years; it's practical, it gives you an overview of areas that you might not have practiced in and highlights what the issues are, what the statutes are, where you need to go, how you can help your client. Another book that I found particularly interesting is Women, AIDS and Activism, by the Act Up New York Women and AIDS Book Group. Thank you.
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