April 9, 2008
Today's HIV Frontlines interview is with Dr. Tony Miles, a psychologist and long-time HIV educator. Since 2000, Dr. Miles has been compiling an extraordinary digital database of first-person stories of people living with HIV. The project is called The Positive Project and Dr. Miles and his cofounder, therapist Dawn Shearer have videotaped more than 100 HIV-positive people from all walks of life. In their interviews, they cover a wide range of topics, including such subjects as stigma, coping with an HIV diagnosis, taking medications and dating. These clips have been used throughout the United States as invaluable resources for HIV education and awareness.
Welcome, Dr. Miles!
Thank you very much.
Tell me a little bit about your background in HIV and AIDS.
Tony Miles, Ph.D.
I was living in San Francisco in the 1980s and 1990s. I was involved in HIV in lots of different ways, starting as a volunteer for an AIDS service organization in San Francisco in the mid 1980s. I've been involved in one form or another ever since, from volunteering, then in a professional capacity. I went into mental health and became a psychologist specifically because of my interests in mental health and HIV. I've been involved ever since in lots of different capacities.
When did you decide that you'd like to do first-person videos?
The very first time was in graduate school. I had an assignment to do something for class related to HIV and AIDS, and as I looked up information to educate my class, it just felt really boring to me. I thought, this is going to be so limited in the impact it could have. I had a good friend named James who was living with HIV. I tried so hard to get him to come to my class because I knew the class would really be engaged. He was poised to educate them in ways that I couldn't.
He wouldn't come, he was too nervous. I was so frustrated by that and I didn't want to miss the opportunity, so he agreed to let me film him. I asked him a series of questions, I filmed him, and then I took it into my class. It was really so successful that it has stayed with me ever since.
How many videos do you have now? When did The Positive Project start? What's the history of the The Positive Project's collection?
The interview I was referring to just a moment ago and the one I had done in class planted a seed early for me about the impact and the value of first-person stories via video. Things have developed so much in the world of video with digital technology. This is where it all came together for me and one particular colleague. We started thinking about the kinds of things we were hearing in therapy. We're both mental health professionals. We were hearing behind closed doors not just the struggles people were having living and coping with HIV, but we were also hearing lots of wisdom, lots of knowledge and lots of success stories about how people were figuring out all kinds of things about it: how to adhere to medications, how to date, how to disclose status to family and friends, how to cope, all kinds of things. It felt really frustrating to us that we didn't have a forum for sharing that information. As therapists, we are obligated to keep private what we were hearing, so that's what we did.
We started the Positive Project in 2000. The intention was not to keep [what we were hearing] behind closed doors, but it was -- to the greatest degree possible -- to share with the world the kinds of things we were hearing. We took off our therapist's hats, we put on our Positive Project hats, and we started looking for volunteers who were HIV positive, out about their status, and wanting to help others, and we started filming.
Now we have 140 interviews filmed. We ask each person roughly 50 to 60 questions, depending on their situation, and then develop video clips of them responding to very specific topics. We're still in the process of editing what we have so far, but once it's edited, we will have over 5,000 video clips from all different kinds of people talking about different kinds of things.
Who was your partner in doing this?
She's still my partner. Her name is Dawn Shearer, she's a mental health professional and was the first person I really sat down with and said, "I have what I think is a really good idea. It makes a lot of sense to me, and I'm not sure what the first step is." I contracted with her initially to help me move this project forward, and then shortly into it there came a point where she said, "I don't want to contract to work for you in this project, I want to do it with you. There's nothing more important that I could imagine doing with my time." We quickly reconfigured as partners in this endeavor and have been so since the very beginning.
How did you recruit your first interview subjects?
For the very first interview, we approached people that we know in the community, in our local community here, who we had seen do public speaking about living with HIV. We recruited four people locally to do our pilot interviews and we learned so much from those. What we learned really was that the interviews needed to be really interactive and much more directed. We need to ask people very specific questions about specific topics because that would allow us greater use of the interview afterwards. Longer interviews telling somebody's life story from end to end are interesting, but there aren't so many uses for it unless it's more like a long documentary.
You said that you were listening to your patients' stories and you thought they were so valuable. Did you approach any patients?
No, I had to be really careful about that because of the ethics of my profession. That would really be a dual relationship or a conflict of interest. I wouldn't approach one of my patients directly and say, "Here's this project and I think it's a really great idea and I hope you do it because I know what you have to say rocks!" I may be thinking that inside of my head, but it would be inappropriate of me, perhaps, to pressure them or to have them somehow perceive that if they participated in this project they might do it to please me.
It's been interesting. I've had to get a bit of consultation to be really ethical about how I proceed, because the two hats I wear are very different hats.
I definitely make the opportunity known, but in a very neutral and general way. If somebody is interested and they then want to pursue that, I absolutely leave that to them. If they want to participate in a full-scale, then I'll actually let my colleague do the interview. I wouldn't do the interview myself with somebody that I have seen for individual psychotherapy.
Are you continually adding to your collection?
We've collected interviews in lots of different settings, kind of across the country, different venues, at conferences. We've gone to a number of different gatherings of different compositions, if you will, and gotten interviews in all kinds of ways. We've had some as recently as last month. I collected one from a gentleman here in our local community who saw us on the Internet, thought that he'd thought about something like this for years and years and years. When he called he said, "I feel like my time has come. My time has come when I can speak openly about this and I'm really excited." It was a great experience for him, and he gave us a great contribution.
Is there any kind of person that you're missing for your collection? Are you finding lots of gay men but you can't find straight women? Or you can't find straight men? Or you can't find Native Americans? Is it harder finding one type of person?
That's a really great question. We've had good fortune in terms of the opportunities we've had to go to different conferences. Some conferences have a very specific focus on certain populations, and so we've actually had a really wide representation. I think what we've had the most difficulty finding in terms of representation so far are Latino participants, and particularly Latino women.
Our goal and commitment is to have the database be as diverse and large as possible, because like any database for any purpose, the larger it is, the more diverse it is, the more robust it is and the more applications it has, and this is no exception. That's definitely one population we're hopeful to bring into the collection with everybody else.
If someone reading this would like to be interviewed on video for The Positive Project, how would they contact you?
They can visit the Web site, which is www.thepositiveproject.org, and on the Web site now what you can find is a wide range of collections of what we already have. People can search through the collection that's posted online and watch video clips at no charge. You can look through for different topics.
Let's say someone has an interest in learning about how to cope with a new diagnosis. You could go to the Web site, search through the video clips and find people answering that question. We ask the question, "What would you say to somebody who's positive who's trying to figure out how to cope with this? What would you say to them?" You can go to this site and find those video clips, or you can go and you can search by specific demographics. Maybe, for whatever reason, you want to hear the clips of women. It's easy to sort through by that.
If somebody wants to participate and give their story, I would suggest that they go to the site, look there, and see if it feels like a good fit. They need to be out about their status, and have a comfort level of knowing that we can't predict in advance who will see it. Truly, it could be anyone in the world could see it, now that things are posted on the Internet. We had one participant who really wanted to give her story, and she said, "You know, I'm out to everybody in my family, I'm out to all of my friends, but I have one aunt in Virginia, and I'm not out to her, and I don't want to be out to her and I don't want her to know it." We discouraged her from participating, because we could not ensure that by some chance her aunt may not see this.
It has to be for people who are out at that level. If it feels like a good fit, and they want to participate, they will find ways to contact us on the Web site. What we're working towards is we've had so many people who are interested in participating, what we'll probably do is go to different parts of the country and organize an event, go for a couple of days, collect as many interviews as is possible, and have local people in those communities help us coordinate it.
How are these videos used? Are they using it in any other way besides individuals going to the Web site and downloading specific video clips?
They've been using it in lots of ways. That's what's really exciting for us. Having built a collection of video clips, to have it in a database format you can kind of slice it and dice it in all kinds of ways to meet all kinds of end-user needs, both for prevention and care. We've been approached by lots of people. Now the ability to get the video clips offline is a newer capacity for us. That's really exciting, that just happened at the beginning of this year. That throws the doors open in a way that is bigger than had been the case before that.
Prior to that, we had been formatting CD-ROMs and DVDs by request, and they've been used in lots of different settings by ASOs [AIDS service organizations] and CBOs [community-based organizations]. Medical care providers also have used them and therapists have used them to meet their own needs because they want them for different purposes. Some therapists have wanted to use them to launch conversations in support groups that they run. Some providers have shown them because they want to encourage their patients to adhere to their medications. Other people have shown them to people who they hope will think about getting tested.
How is this funded?
Honestly, the hardest thing has been funding. We've never been fully funded. We worked the entirety of last year in 2007 without funding. It was really volunteer time for myself and my colleague. We're committed to it and we'll see it through, but we still are hungry for finding the right partners who can help underwrite the cost of bringing this into the full fruition that we're getting so close to.
We've had some funding from pharmaceutical companies, very little really. We've had some private foundation funding, and we've had very generous funding from individuals in our local communities and our networks of individuals around the country who feel strongly about what we're doing. That's been the funding thus far.
What's the best thing that's happened as a result of the project since you started it in 2000? It's been eight years that you've been working on this.
The best thing, I think, is not surprising. It's what we thought would happen, that is to see the very real impact in a personal way. Let me just think of two examples to give you. One is both for people who give their story and for people who hear it.
We interviewed a man a year ago last summer, and he really gave a great interview. He was really nervous. He had a lot to say; he felt very strongly. It was a pivotal moment for him to go public at this level. He gave his interview, and what we always do after the interviews is we send an interviewee a DVD copy of everything we just filmed, just for their own reference and really as a thank you.
We sent him a DVD, we didn't really hear from him and didn't particularly expect to. Then almost a year later this last summer, I got a really amazing letter, and he said that in 20-plus years living with HIV, participating in The Positive Project had been the singular most empowering and positive experience that he had had. He said to be asked so many questions with such sincerity and such intention, and what he had to say, he said he felt so respected and valued that he felt that he had something really valuable to contribute back from the experience that he has had, and he had not experienced that before. He said he came out of it with a sense of personal worth that he wasn't expecting, and he just was following up with a letter to thank us.
Really, that's just as good as it gets.
There are lots and lots of examples like that, of people who are personally impacted by participating, as well as people who see the materials who are also impacted. There was one man who watched some video clips -- can I tell you two really quickly?
One was a while back. A gentleman was watching some video clips and he said, "Oh my goodness," (this was not a participant, this was a person viewing some video clips from others who had told their stories), and he told me, "I participate in the local research trials, I go on speakers bureaus, and I do things like that. I'm now looking at all these video clips of these people and I don't know these people. It has made me realize that I think I know everybody who's living with HIV, and I realize now that I don't! Even after all these years!"
This man had been positive maybe 12 years or so, and he said, "I realize even now when I go to the grocery store, I'm still thinking I'm the only person who's positive. Or if I'm at the post office standing in line or at the bank standing in line, I'm thinking I'm the only person who's positive. Now, as I look at all these faces of people talking, I'm thinking that I'm not the only person who's positive! How is it that I have so comfortably inside of myself accepted that I am the only person who is positive, when clearly I am not? Now when I go to the grocery store and the bank and the post office, I think I'm going to have a different experience."
Wow. That's great!
It's really great. So there are outcomes that qualitatively change the way someone can feel inside. But we couldn't have predicted an impact quite like that.
The other one was just last week. I met -- now this is where I had to be careful with wearing two hats, one as The Positive Project and one as a psychologist and a psychotherapist -- but I was working with a patient who was diagnosed about 16 months ago, and has been since that time very, very, very anxious and frightened. I just met this man, who's really terrified of lots of smaller physical things that he would discover about himself and then be really frightened that this was the beginning of something big and perhaps the beginning of the end of his life.
I asked him if he knew anyone else who was positive, and he said he knows one person, and that was the only person he had disclosed his status to. As I was talking to this man who has really been suffering, I said, "Let's keep talking and I just want to show you something." I went to the Web site, www.thepositiveproject.org, and I pulled it up, and I didn't even play a video clip. I just showed him the still pictures -- if you go to the site, what you see are icons and still images of people, and then you click on that to watch the video.
I scrolled through a couple of pages, showing him lots of pictures of people, and he said, "Oh my goodness. Who are these people?" I told him just a little bit. I said these are people who are positive and who participated in this project knowing that anybody in the world could see it, because what they all have in common is that however they have done it, they have just figured out how to do it. They have just figured out how to make sense of all this and how to keep getting through it.
He was so interested and he started asking me questions, like "Where does he live?" and "How long has he been positive?" and "Where does she live?" and "How long has she been positive?" I was answering those and trying to remember to the best of my ability because there are lots of people there. Right in front of my eyes, he calmed down. I saw his anxiety really dissipate, and he said, "Since the day I was diagnosed I've been thinking that I'm the only one. I know that I'm not, but it's been feeling like that. I'm not the only one. I think what's been going on is it's just been really hard for me to deal with, not having known how to deal with it. All these things that happened with my body, I get so frightened about, because I'm anxious and I don't know what else to do with it."
That's great, and I guess that speaks to the fact that HIV is not on TV, it's not in the newspaper, and it's nowhere out there. If you are diagnosed with HIV, you feel completely isolated. You think, "I don't see it on TV, I don't see it in the newspaper, I don't see it in magazines." Nobody talks about it.
To see this kind of resource, it validates what you're going through, and that there's this huge community out there, it's just not visible. It's this underground community, almost. You have to find it, and it'll help you feel better.
Even though I think people are aware there are at least one million people living with HIV in the country, at least 300,000 people who are getting HIV treatment, those numbers don't seem like individuals. This kind of individualizes the pandemic and says, "Look, here are some faces and you're not alone." It's amazing because we have so many things on our site that say "You are not alone" because it's the big message, and yet those are just words.
It amazes me, but it's fairly consistent when I have the opportunity to share some video clips with people. Often people will say, "I would never have guessed that any of those people were positive. They all look healthy."
Right, they look normal. They think there's a particular look or something and that they fit that look somehow. There's no look. It's a human disease, and so people look like humans.
You never know how it is that certain interviewees really connect with an appeal to certain viewers. You just never know. I showed some video clips to a graduate psychology class, and was showing them some clips about prevention. One of the questions we ask to the participants is a great prevention question. We say to them, "What would you say to other people who are taking risks? What would you say to them?" I love to show their answers, because their answers are interesting and they mean it. They're compelling. They don't want other people to be taking risks, people who are negative. They have lots of things that they say about it. I was showing these to this class and then asking for some feedback after the class and one woman said, "You know, I was taking everything in and then this one interviewee," her name is Shannon, and she said, "I just cannot believe how impacted I was."
I asked, "What impacted you about her?" and she said, "She looks just like my sister, and I thought, my sister could have HIV. Any of us could have HIV. What made me think this couldn't happen to us? Of course it could."
We have Magic Johnson and then who else? He's the only person who everybody knows is positive. I can't think of anybody on a national level, if you ask, "Who is HIV positive?" He's the only person who would pop up. But there are no women. There are no young women; there are no 70-year-old women in retirement homes or 20-year-olds in college. There's just none of the other people. We have one man.
Hopefully, we'll take part in promoting this project, since we're going to be starting to show a few videos a month on our site. I hope that the project gets a lot of publicity from this, and you get a lot more interviews!
I appreciate that. It's really exciting. We're thrilled that you're going to be showing them, and the interviewees of course are thrilled as well. That's why they give them, that's why we collect them. I'm thrilled that you find them a good fit and you're going to show them. That's terrific.
Thank you so much, Dr. Miles, for taking the time to talk to me and for this great project.
My pleasure, Bonnie. Thank you.