You bet! We add any time we get the opportunity. Often people ask us, "How many stories, how many interviews are you trying to collect?" We don't have a set number at which point we would want to stop, because I think everyone's story is individual, everyone is unique, everyone has something to contribute. Our goal is as long as there are people who want to participate, we can find a way to accommodate them.
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.