Susan Cornutt and Jeff Graham

00:05 I'm Jeff Graham and I am still hanging on to 46 for the next few weeks. I today is August 16th 2011 where in Atlanta and I am interviewing my dear friend Susan.

00:19 And I am Susan Cornett. I am 50 and it is August 16th 2011 in Atlanta. And I am talking with my friend and activist Mentor gift Graham.

00:35 So Susan what I really wanted to kind of talk about today is both of us have been involved in many different capacities in the fight against HIV and AIDS for a long long time. And this is the this year's the 30th anniversary. And so I wanted to just start off by wondering when was the first time you've heard about AIDS and what did you think about it when you first heard about it? It was probably 1986 and I was working at an alcohol treatment center and lot of folks were across addicting. So wait a lot of folks and it was a it was a county-run facility, so it wasn't very fancy and we had a lot of folks that were IV drug users and so being in the medical profession. I heard about AIDS at that time and

01:29 And in 1986 it was

01:35 Death sentence and it really was a death sentence. I mean folks were dying in weeks to months and I thought of it as not not other it would happen to my patients. Maybe it didn't happen to me or people that I knew cuz you know, I wasn't a gay man and I wasn't an IV drug user and I wasn't Haitian and I hadn't had a blood transfusion and so I was insulated or so. I thought people who were I really didn't even work in at the alcohol and drug Center. We weren't testing people that I don't know that there was even a test at that time when I first heard about it, I think maybe the test for the alcohol and drug facility.

02:35 Boulevard 265 Boulevard Northeast, when was the first time that that you really thought that aids was maybe he's affecting your life. We're going to affect your life. I had a girlfriend who know this is very ironic, but I had a girlfriend who thought she could be.

03:00 At risk for HIV and I don't know HIV was a term that use later. I mean it was 8:00. And and I we were both we were both in a recovery program. And and so I said we know I'll go with you cuz you don't do anything alone and I'll I'll go ahead and get tested to and never had connected many of the dots in my own life that I had three different infections that all three of them by three different medical professionals could have been hey, would you like a test? So I just went nearly with her and got a test as a supportive friend and I thought will you know, there was that IV drug user in recovery that I dated.

03:45 It probably wouldn't hurt and so we went and got tested and she tested negative and I was called back into a different room and was told that I was the Apes woman in the state of Georgia to test hiv-positive and and I'm pretty sure that was the last thing that I remember hearing. I'm pretty I got a pamphlet and I asked if I could use the phone and cuz I had been so confident. I got my test results on my way to work. So I called and said, you know, I'm not going to be coming in and out and went home and

04:28 When was Dumb found it, you know, it was numb was scared cuz like I said this was this was something that I thought I was insulated from. This was something that people die from quickly.

04:43 And I remember thinking.

04:45 Then I'm not going to have a baby and I'll never get married and I'm going to die.

04:53 And who can I tell and what year was this? 1987 November October October 1987

05:03 So so you were still aids with something relatively new just to you as a concept. Absolutely because you know, they weren't commercial. Nobody was talking about condoms I had gone and I know that I'm thinking, you know, it's been a long time since I have been to that place and time cuz it's so it's still a so painful and anticipating this today. I thought it was very painful to go there but I had a doctor that I worked for back then that I even asked him. Should I get a test and he was like No And I swear, you know, I'm dating and he said

05:47 No, because there are no laws to protect you and your rights if you were to test closet.

05:54 That's that's interesting because

05:57 When I first got involved with with AIDS was when I was part of the gay and lesbian student group on my college campus and this would have been a few years earlier. Probably 85 and we brought in someone from the local Health Department to talk to us about AIDS and how to protect ourselves and that was actually the same advice that he gave us is the do not test the risks are too high. There's no treatments. It's not going to do you any good to know if you have AIDS and so just assumed that died everybody who you're sleeping with or dating does have AIDS so protect yourself all the time, but don't get tested because I don't think somebody could come and Rams you up and take you to internment camps. I mean, so I got think it's very interesting that two completely different social groups, but that

06:57 The same point in time you got that same message that it was it was better not to know out of fear of the government and the government actually coming in and hurting me absolutely as well. As you know, people were getting evicted and they were getting fired and it was common because there was nothing to protect you right then hard to believe now, but there was not an Americans with Disabilities Act 1987. That was before that was actually before the President Ronald Reagan hits anything about it. It was before the Surgeon General had done his America response to AIDS campaign. So yeah, there was nothing going on in sort of public education at all. It was just all at least four for my social group really was trying to scrounge together the best information you could usually from the gate press cuz they were about the only group that was covering it and then just

07:57 Rumor innuendo gossip

08:02 7 in into I'm guessing it was pretty much the same for you for for trying to find out information even though you did work in the medical field. So you may have it cuz I didn't want anybody to know and and I actually I had a girlfriend who was a pediatric nurse who said I think I know what Doctor Who's doing some research in Atlanta Jim Brody and she said call his office and that would be somebody and you know, he was overloaded. He couldn't see me he had a partner Melanie Thompson who I got in to see and she gave me some information and did my T cells and they were less than 200 and and there was nothing there was no AZT on the market. It was in research and there was no study. She could sign me up for that accepted women there was nothing.

09:01 And I just tucked it away somewhere mentally and didn't talk to anybody else about it probably for five years when my mighty sales plummeted below 60 and and then I thought I've got to I got to talk to somebody cuz all during that time I never talked to anybody that was HIV positive.

09:27 And for five years and I told probably three people.

09:34 And coz

09:38 I was scared and denial was easier than actually facing something and we don't have any action steps. You know, what's the use of just looking at it and

09:50 So I and this is where we met our paths cross because the only support group for HIV positive women that I could find in Atlanta. Was it a survival project where the executive director and that was where I got my information and that was still you know, it was it was much more than gossip and innuendo but it was all People to People contact people that were hiv-positive saying this is when I am taking and this is the this is the mushroom that I'm growing and some kind of vinegar water and you know, this is a doctor that I'm seeing it was that was the network, you know it what it didn't come from the government. It didn't come as much from medical professionals for me.

10:50 It came from the women in the support group and the people that appear facilitators with operation survive educational weekend workshop and it was word of mouth and it was it was meditation and it was yoga and it was spirituality and because there was AZT then and then there was DDI and that and that was it and anything beyond that was in trials. And so that was a network then.

11:27 5 year. Of time was like day-to-day living this five years. Can I cuz you know, I'm I'm really good at compartmentalizing. So it was it was constantly being worried that somebody would find out because I was sure that I would lose my job and Medicine cuz who wants the physician assistant this guy days it was

12:00 I had I had contacted try to contact the gentleman that I had had two sexual partners at time. So I tried to contact two of them and got messages to people to to them and was not direct I

12:16 Had already had sex with one guy the week before I got my test cuz again, I didn't think I was going to be positive and and as it turns out I had to go through disclosure with him and I I

12:35 Get to women for my recovery program to be at the house cuz this was a big Burly guy that I had slept with in a bar when we were drunk and I didn't know how he was going to and he was a big Burly guy with tattoos and and he was cool. But you know, I didn't know I was headed to people over at the house with me and

12:59 And then we ended up getting married, which was very Rocky doing that. Of time and

13:07 And he wasn't a believer in and safe sex. So getting him to use condoms with sporadic and you know, and that's that's another level of stress, but mostly It Was Fear it was feared. I didn't disclose to my dad for 10 years and I didn't want to disclose to my mom because she had said all people with age should be rounded up and put in camps.

13:33 Yeah, so that's the moment that you want to tell your HIV positive. So that was it was plodding along in a lot of fear and ignorance of what what made you decide that you wanted to to move beyond that what what made you seek out a support group? It was pure desperation. I was I was at a wall I was I had no place. I mean I had less than 60 T-cells. I had to talk to somebody who not only felt bad for me but who knew exactly what it felt like to get that.

14:11 I got that lab results on the phone and what that felt like and and so that was when I got to find somebody and

14:26 And that was it and

14:28 Bat

14:31 Changed my life the women's group changed my life. What was it like going in your first women's support group. I was scared. You know, what if somebody saw me going in the building? You know what they're going to be some kind of sign with an arrow support group here. What were they going to look like, you know where they you know, it was I had never I didn't know I didn't know what to expect but I was so desperate. I think I didn't care and there were five of us to remember how you felt after your first support group meeting.

15:13 Relate it's it's it's like carrying a burden that you don't realize that you're carrying all by yourself until all the sudden. You're not carrying it alone anymore. And it was that sense of identification and somebody saying I know what that feels like, I feel like that too. But then there was also in this is what I did and this is who I talk to and that was six months ago, and I've been living with no T cells for 6 months, and I'm okay that gave me hope

15:47 That there was something better out there if I just kept doing this. I remember the women's support group near you talked about being afraid of just people identifying you and walking into the building and I remember our offices were in a little house on 12th Street at the time and I often times we have we have another meeting so we can hear the back door open and close but we never saw anybody and we knew that that was the women's support group going down in to the support group room, which was down in the basement and so women coming in and out and and and we really all wanted to give you all so much space and then suddenly something happen and suddenly I know there were several if you think that I started wanting to facilitate support groups and talking to other people. Do you remember was that an icon?

16:47 Kids Choice that you all made it the support group to to do that or what made that change Alicia Culver some women. I need women. Facilitators for operation survive and you know women need to come into that workshop and see other women just like them and they need to see your face and I said, okay and I and I think that time there was only two of us out of the support group that were female facilitators and then Eva came along not long after that cuz we needed a woman of color in there and it was

17:32 It was about

17:37 Once you realize that connection is so powerful and can be so healing on a physical level sharing resources on a spiritual level. Then that's a huge incentive to want to do that for other people. And then there's the bonus once you do that and knowing that you always get something back from it and that the best way to get out of yourself. He's always help somebody else and it was just so much when all of you started I doing the support groups and facilitating and training on that weekend and how quickly it started to change things at the agency because we did leave we never saw women except for HIV negative women that were coming in to volunteer and and and how that really started to change things and in and add an important time in the in the midnight.

18:37 I also want to talk a little bit about our activism together cuz that's you know, beyond the beep at the door. That's how I knew you for the first couple of years of the piece of the door the meeting. I honestly don't remember what the first advocacy event you attended was with me. Do you remember what that was?

19:03 If it was a Lobby day at the Capitol.

19:07 That probably was it there also was I guess that was the first advocacy the the first time that I started speaking was at fundraisers, but I think that was when we when you put together the task force the AIDS drug assistance program task force because that was the first time that the 8th at budget had ever had an increase in it. And so that I think was one of the first advocacy things that I did cuz he I was still closeted outside of the support group and a survival project about my status cuz I was still employed and that was my incoming that was my health insurance at a lot of women in the support group was I I was the only guy in so I drove the bus up to a demonstration in DC. Were you you weren't a part of that.

20:07 Stop that. We had a great time that weekend. And I think that's when I got to know more of the women in the support group and that I do remember you. Yeah with that with the eight task force and going down to the capital and I guess you started doing more and more of it. I remember you often times you go to to Washington DC. You actually ended up serving on the board of directors with the Care Coalition there for a. Of time. Why didn't you I did I did and and

20:40 This well, you were my mentor and all of this. So it was learning the steps the the fax the talking point the the outreached and the introduction of who I was the and getting through a couple of you know, this is what our budget is. This is what our needs are and by the way, this is important to me because I'm a woman living with HIV and I know without these life-saving medications without access to these life-saving medications you die and and it was it was

21:17 It was powerful.

21:21 It was fun because people weren't expecting they apparently have been told that I look like more of a do-gooder from Dunwoody then a woman living with HIV. So there was that factor and a lot of times at that point. I was in a healthier second marriage and he would come along so there was this nice middle-class white couple they would come up asking for a raise funds and I will never forget though that one politician when I said that his hand to slip trade out of our handshake is slid right out and there were many that took a step back and not because of me because of the disease because they were much closer than they had expected because it was coming at them from a source that they had felt was safe. You know, I was more like them and we were just having a conversation about those other people and how important it was to help them and then all the sudden boom. It was right there and their face and that

22:21 Never fail to tickle. Me too. It's you and Drew were like our secret weapon because I we could we could talk about it. And then you two would would explain your story and you can introduce herself as a woman living with HIV and just Jaws would drop and and you could just see this this jarring reality that these you know, I let state legislators and staff members have been Washington DC and they had this rigid concept of what someone living with HIV should look like we're should be like and you just didn't fit into that stereotype. Do you remember any died? I remember one specific story opinion in Washington DC and a senator's office of a Mississippi Senator. I don't know if you remember this remind me Fab Cochran's office and it was his chief of staff which was this.

23:20 Real kind of stuck up kid and went around the room and all of us were sharing our little tidbits our stories about why we thought that they needed to really worry about the Ryan White Care Act. I think we may have been working for reauthorization and then he got to you and he said so little lady. What's your story? Do you remember that? I vaguely I do.

23:47 And that was just that was just a cat Brothers amazing times that you came back and and you just did not let him intimidate you you just scared him straight in the eye and said you were women living with HIV and I can see this guy shrink your experience. And that that is the most powerful tool in these meetings, you know, cuz I went into them thinking, you know, I might my knowledge about politics and funding certainly improved over the years. But when I first started doing this, you know, how am I qualified to lobby and it would end that was that, you know, you're the expert on your story and I still use that to this day because I am I have to say that Rings very true when so there's a confidence with that but there's also by the time we were lobbying in Washington we had we had had

24:47 As a task force real success on a on a state level as far as as getting people off the waiting list and which as you know the waxes and wanes and it's a huge one right now. But but when you actually feel like, you know 12 us lobbying on the 8th at passwords make a difference that that's empowering and it's that

25:15 You know when we haven't talked about it specifically today, but it's the transition between being scared and being closeted and being fearful and ignorant at 2 being empowered in being a resource in being useful and and talking to people about your previously most shameful moment. That is transformational certainly has been for me and I've seen it been that way for many many people to be able to get to that point where you walk into total strangers who have very important jobs and and are able to say that and get a reaction and get an ear and change of perspective and maybe change funding that it makes a difference and allows you to keep doing what your organization has been doing. Do you remember?

26:15 National land in Indian moving from the shame to just wanting to feel your own empowerment and in helping other folks. If you remember the first time that you were more public with your HIV status, maybe radio interview or TV interview. I remember that there was one time that we did we convince one of the TV stations to do a program on operation survive and especially women needing to come through that program and it's when justifiably so everybody was still real nervous about it. We had to choreograph it so that the camera angles were all like ankles and ears and I thought you were much more public with that. Do you remember how that happened? And it may be one of the first times that you were more public with talking about your HIV status.

27:15 I was when I facilitated it operation survive, cuz that was a room full of people. I didn't know I was still working then at a private Clinic that would have fired me if they knew I was positive because even with the Ada they can always find a reason to fire you in a big conglomerate like that. And I I will do that. So there was that there was the the TV spot that you that you were talking about. And I think there was another one after that that Drew and I did as a couple and you know that it was watching our feet walk down the sidewalk or our shadows on the wall. And then when I when I retired I was like okay, then I can handle any of the people who didn't know before they saw me on TV or they saw a flyer. It's okay. I can handle those because now I have my finances in order and I have my health insurance in order and I can do any of this.

28:15 And and

28:17 I think I had underestimated how.

28:21 Even when you're keeping a secret is that you're as sick as your deepest Secrets is something that they say in recovery and it's so true and even thinking hey, you know, I'm really comfortable with this is a new level of comfort and personal acceptance and loving myself that is achieved went with that freedom of being able to talk and and it's a different conversation that you have with people when you can do that when you retired women support group until 92, so actually that was four years. So that was actually more progress, but it was 9 years after I tested positive.

29:06 Which I don't think was necessarily unusual at that case in and you know just from talking to other people other folks certainly not as involved as I once was but I've just always felt that even though so much has changed with the law so much has certainly changed with our ability to treat HIV and and provide people hope that the for folks who test positive today. I don't think that the emotions and those first few moments of knowing your HIV status or any different today than it was in the I can't believe that they are the thing that makes me hurt for people testing positive certainly in Atlanta. Today is the resources are so much more limited than knowledge is big but the resources are so much more limited because they are

30:06 Innovations like a survival project have closed and for me it wasn't it wasn't just a lecture. It was a community of people that that nurtured me and helps me make that transformation because it's a very different experience going to a doctor's office and having them give you a prescription and tell you things are going to be different than it is. How do I tell the person that I'm sleeping with and I'm positive. How do I tell my child? How do I tell my father those are things that happened in conversations among peers in and workshops done by peers that are not replicated bye-bye anything that I've ever experienced in a doctor's office as well meaning as people who work in medical practice around HIV in a jar. That's not a substitute for somebody that can say this is what I did this isn't perfect. But this

31:06 How I did it and if you don't want to tell right now you don't have to tell right now in and those cuts in those Grassroots agencies.

31:15 Agency in Atlanta that did that are not here. So for people who test positive now the way they get support is different or absent. Yeah, that's that's one of the things that really concerns me about the the the future is I think that folks are going to have much greater access to see doctors and nurses and and medications but we're going to lose is is that one-on-one Pier had building a community of people. I think we're going to lose that and I'm really concerned about what that's going to do to the entire fight against AIDS in the in the long run and

32:01 I had dinner last night with the women, even though we don't have the women support group. We had dinner together. And those are those are lifetime relationships because we may not see each other for six months. We may email sporadically, but when when something comes up,

32:28 One of us is considering having a baby, you know course you talk to your doctor, but you talk to your girlfriends and one of them's already had a baby. And what was it like for you when the healing that takes place with HIV. There's the physical healing which is obvious. There is a spiritual healing there's an emotional healing there's I mean, I believe I was on some level vulnerable because

32:57 More vulnerable to holding onto the fear and staying closeted because I had I had issues that we're I didn't love myself to start with and so walking into that and having a disease where you know, the fear makes you turn even more Inward and question personal value, that's not something that you can get in a 30-minute healing in a 30-minute doctor's appointment and not even in a therapist appointment though. That was very helpful for me that is ongoing building relationships having conversations with other people who have been in that situation and reaching out to other people who are in a similar or different situation where you can also be a tool is that that neighborhood that Network that

33:48 I think the deepest healing happens because my doctor can prescribe a personal medication and they are miraculous. But you have to have a desire to want to take it you have to have a fate that they can do what you have to feel safe going to that appointment. You know, you have to have somebody sometimes it goes with you tonight appointment that human element that peer-to-peer relationship is for me. It was vital. That was a transformational part and I think that's why the

34:18 Though if that's when the funding has decreased in those agencies have had to close their doors and people think everything is okay now because her is it prescription for it that type of nurturing environment that saved my life is not as available today. I don't want to make you feel old is almost 20 years ago that you went to your first support group meeting and how many of those women won are not only still your friends but still alive, you know, thank God all of them all of them that there was indeed.

35:08 I think it really does show that you are exactly correct that it was this support group is was this community of women that came together and you all lived I will also say a community of women and that's a subset of the community that nurtured me the the gay men are where I got my information. They're gay men or the ones that nurtured me into activism or speaking as at fundraisers passing on information animals about getting information and well, we could have a whole 40 minutes with me talking to you about your activism because that is the community that saved my butt. I mean the that allowed there to be at 8 survive.

36:08 Project that that was sensitive enough to women's issues to say, hey there needs to be a woman's HIV positive support group. So so the women that I know and love from that support group are blessed and lucky to be alive, but we have both lost amazing friends over that 20 years that

36:36 They have not been the same way.

36:39 Jam

36:42 Well

36:44 I'm really glad that you were here today. And I'm so glad we still know each other but you were still out there fighting the fight. We both are.

37:00 When you asked me.

37:04 Cuz you always say yes, so that can't. Thank you.