Since that time, he has been actively involved with many high profile agencies and organizations throughout the state, including San Francisco's Shanti Project and the San Francisco branch of the Metropolitan Community Church. He is currently a trainer and lead curriculum writer for the University of California at San Francisco's AIDS Health Project. A dynamic speaker, Ed has facilitated workshops for a diverse range of groups, including fifth graders, college students, social workers and Eastern European policymakers. He has been a guest on National Public Radio and was a keynote speaker for the 13th Annual National Conference on Social Work and HIV/AIDS. He is especially known for his AIDS Timeline, which involves a group of people making an interactive, collaborative history of the AIDS epidemic, combining larger cultural events with the personal milestones of everyone in the room.
Ed is a firm believer in the power of a one-on-one client centered counseling session to meet the client in a compassionate and non-judgmental way. It is Ed's philosophy that interventions should be less about a counselor's prescriptions and more about helping the client to actively discover and implement the best possible solutions for themselves, based on the context of their individual lives. He thinks the biggest risk factors for HIV are the larger contextual issues that impact peoples' lives, including poverty, racism, homophobia and the lack of access to health care. His view on "risk-taking" is one that prevention educators at large should take note of. According to Ed, "Risk-taking is a part of life. It is how we explore the world, figure out who we are, experiment and find out what does and what does not work for us as individuals." In that, he feels that interventions that only focus on the harm of an activity do not foster rapport or any real movement and, thus, are often ineffective.
A New York native and graduate of University of South Florida, Ed lives and works in San Francisco, where he has resided since 1976. In his spare time he can be found performing at various storytelling and literary events. He has been published in Journal of HIV/AIDS & Social Services, Christopher Street, the James White Review, the Bay Area Reporter, Arts and Understanding and the anthologies Beyond Definition, Rebel Yell, and the groundbreaking AIDS Reader. He was nominated for a Pushcart Prize for a poem which was included in the Prentice Hall college literature textbook Discovering Literature. He finds solace in the natural world, with such activities as hiking, backpacking and camping. He also enjoys spending time with his partner Kirk Read who is a writer and HIV counselor. Ed can be reached at firstname.lastname@example.org.
How long have you been doing prevention education?
For over 20 years.
Can you describe how your work has changed since you first started?
My involvement in the field began as a volunteer in 1983. At that time, HIV had not been clearly identified, transmission routes were unclear and services were almost non-existent. Death was the outcome for the overwhelming majority of people with "Gay Cancer" and the dying was occurring in earnest here in San Francisco.
1985 is an important date as it was the beginning of HIV testing and, in some ways, the beginning of HIV prevention as well. For the first time, you could tell if someone was infected or not and, since a counseling component was part of the testing process, HIV education and prevention began in earnest. Unfortunately, for people with AIDS, the dying continued.
It wasn't until 1995, and the beginning of treatment success, that the morbidity rates began to decline and hopes for people to be able to live with HIV became a reality.
Prevention now finds itself in a quandary, as treatment success has lessened the "seriousness" of having HIV for some people at risk. Also, 20 years after the arrival of the test and the beginning of HIV education, many people already know the two or three things to refrain from to not become infected. Those of us who work in HIV prevention/education increasingly find ourselves working with clients who are as knowledgeable as we are regarding HIV transmission, and who are tired of the same old messages. There are also ways that prevention education continues to focus only on the harm of risk-taking that creates a barrier between the client and prevention efforts.
If I were to follow you over the week, what would I see you do at work?
If you were to follow me over the course of a week, part of our time together would be in an airplane. My colleagues and I criss-cross the state of California on a weekly basis, providing trainings and updates for HIV counselors. You would also spend a lot of time watching me work on a computer, both at home and at work, writing curriculum that we use in our trainings. You would also spend some time sitting with me in meetings where we are constantly creating new material, revising previous trainings and evaluating the trainers. And, of course, you would be in trainings, enhancing your skills to work with clients who come in for HIV testing and learning how to administer the OraQuick Advance rapid test and interpret results. I am also an HIV test counselor, so you would be in a clinic setting, watching a large group of experienced counselors work with a number of clients who are coming in for services. The rapid test provides clients their results in about a half an hour. This has radically changed the testing process, both for clients and counselors as well.
What do you think has been the most successful way to get people to minimize their sexual risk-taking?
It depends on the client and the specific context within which sexual risk-taking may be occurring. I am a firm believer in the potential effectiveness of a one-on-one client-centered counseling session to truly meet the client where they are around their risk-taking. If we are able to begin our interactions with what the client thinks, feels and knows about HIV, we have a greater opportunity to negotiate some small step that they could realistically implement. This means going much further than simply telling every single person to put a condom on. I think that increasingly, given the knowledge that most people already have about HIV, interventions need to be less about what the counselor thinks the client should do and much more about what the client thinks, feels and knows about HIV -- and what they think is feasible for themselves.
What's the best thing about your job?
I am very fortunate to be working in an environment (in this case, training and counseling rooms) with a large number of people, both colleagues as well as training participants, who visibly benefit from the work that I do. Because I have personally lost so many beloved comrades to AIDS in the past, it feels really good to be a part of the larger effort to reduce the number of people who might become infected in the future.
What's the worst thing about your job?
Dwindling resources comes to mind first. The moving of prevention monies into abstinence approaches is so disappointing. I'm also frustrated by the contradictory nature of some of the messages and approaches that come from "on high." On the one hand, HIV test counseling is one of the major interventions that the CDC [U.S. Centers for Disease Control and Prevention] is funding. One the other hand, we also hear that some at the CDC feel counseling is not effective and instead support wide-scale testing as a screening tool. It would also be so incredibly helpful if we could all get on the same page and have the same consistent messages regarding the window period, the real risk of oral sex, etc.
What have been your greatest successes in your work? Greatest failures?
I am very lucky to be in a field where I get feedback, both from colleagues as well as training participants, that let me know that what I do makes a difference to them and the work they do.
The failure is that sometimes it can be difficult to "get along" with everyone and agree about what should be done in any given situation. The HIV epidemic could not have been designed to be more difficult and charged for our planet. A virus in the blood, transmitted from one person to another, often in the act of expressing or receiving desire and pleasure. A virus that is transmitted through sex and drugs, which may lead to death. I'm surprised that we all get along with each other as much as we do, given how loaded these issues are. And, given that, I wish we could find ways to agree more on what needs to be done.
For the most part, what do you think is the biggest risk factor for HIV?
I'm thinking you're asking for more than the sharing of injection equipment and unprotected anal and vaginal sex.
The biggest risk factors are the larger contextual issues that impact people's lives. Issues like poverty, racism, homophobia, lack of access to health care. This is why I (and so many other "frontline" providers) are so supportive of a client-centered harm reduction approach to prevention. The belief that the client, not the counselor, has the best solution for the issues based on the context of their individual lives is crucial.
What is the most important, memorable or useful thing you have learned from the people you work with?
Life is time-limited. It's a precious gift. Don't lie on your deathbed with dreams unfulfilled, trips not taken, love unexpressed.
How do you maintain a positive outlook and avoid burning out?
I have been very lucky to be able to find different ways to stay involved over the years. I started out as an emotional support "buddy," became a counselor on an inpatient AIDS unit, became a volunteer coordinator (for other buddies), became a trainer, moved out of direct care and into prevention, started working in curriculum development, etc. In short, I find different ways to be "new," to keep learning some new aspect of this epidemic and to be helpful.
If you weren't a prevention educator what would you be?
I haven't the slightest idea, really. AIDS came along in 1983, devastated my personal world and threw open the doors in my professional life. I know that what I would like to do is be able to write more and more about my personal experiences and what I have learned from people with AIDS, especially those who are gone. I've had the great fortune (albeit very difficult at times) to be by the bedside of many who have left. And their messages and teachings are clear and invaluable: Life is precious. Be all that you can be for as long as you can. A sign that hung on the AIDS unit where I worked read: "Old age is a privilege denied to many." I try to live with that in mind.
What do you think is the biggest problem people living with HIV face today?
Stigma and homophobia, lack of resources, side effects of medications and uncertainty of the future.
Which populations do you work with? What are the particular challenges of each of these populations?
I work with a very large group of providers who work with a large array of different populations. The individual challenges are too unique and varied to address here, but the approach, I think, is the same for the most part. Stay focused on the individual in front of you: What do they think, what do they feel, what do they know, what do they need? Meeting clients where they are, with an understanding of what their concerns are, has the greatest potential for the creation of a small incremental step to reduce risk, no matter what the specific population issues are.
Have you tried to do workshops in places where people are in denial about HIV?
I have a problem with the word "denial." Too often it is used in a pejorative sense. I provide trainings all over California, often in large buildings in close proximity to major earthquake fault lines. We fly in planes, drive cars, smoke cigarettes, consume large amounts of sugar, run up our credit cards, etc. But if a client decides to have sex without a condom, they are labeled as "in denial."
Risk-taking is a part of life. It's how we explore the world, figure out who we are, experiment and find out what does and doesn't work for us. Risk-taking approaches that only focus on the harm of the activity (i.e., "That client is in denial!") don't foster rapport or any real movement forward.
Has the Bush administration's support for abstinence-only policies affected your work?
I'm waiting to see what the funding reapportionments are actually going to mean to our prevention/education and training allotments.
Who would you dedicate this award to if you could?
To all my co-workers in the training unit at the AIDS Health Project here in San Francisco.
Where did you grow up?
I was born in New York City, spent my early years on Long Island, then my family moved to Florida.
What did you want to be when you were a kid?
A writer, a teacher and an actor.
What kind of work did your parents do?
My father did a variety of things over the years. My mother was just that; a mother to 10 children.
When did you decide you wanted to be a prevention educator?
I wanted to transition out of direct care in hospital settings and into prevention education in 1991.
What other jobs have you had?
Varied jobs as a young person (newspaper boy, stock clerk). Then I worked in the typesetting field before desktop publishing (and the AIDS epidemic) came along.
Who were the most influential people in your life, both professionally and personally?
My mother is the source of my strong work ethic, my relational approach to working with lots of different people, my sense of humor and my dedication to people that I care about. These are all characteristics that she possesses and imprinted on me.
Jim Geary, who was instrumental in developing Shanti Project here in San Francisco to be one of the nation's leading AIDS support agencies. He is a powerful speaker and facilitator, who showed me that you could be soft and gentle and not of the mainstream, and still be incredibly potent and powerful.
My departed comrades and the many clients I worked with who died of AIDS. They teach the most important message of all: Live your life for all it's worth and as fully as you can.
What do you do in your spare time?
I write and read and perform at various spoken-word events. I find great solace in the natural world and enjoy hiking, backpacking, camping, etc.
Do you have a partner? Kids? Pets?
I have an incredible partner who does some of the same kind of work I do. He's an HIV counselor in a clinic for sex workers. He's also a writer, has written a wonderful book about growing up gay in a small town in Virginia, and is currently in an M.F.A. program here in San Francisco.
I share his dedication to his beloved cat Lyle.
Where do you live? What kind of community is it? What do you like/dislike about it?
I live and work in San Francisco, where I have been since 1976. It has been an incredible city for people to come to who feel differently about the way the rest of the country thinks and acts. There is a large "alternative" community, gays and lesbians, transgendered people, young people, progressive, sex positive communities; the list goes on and on. What I dislike about the last 10 years here is how increasingly difficult it became to enter here, live here, find jobs, etc. The very thing that drew people here (the alternative community) becomes increasingly threatened by the harsh economy and greed that permeates everything.
If you had any place to live besides where you live now, where would it be?
I lived in Greenwich Village in New York City from 1971 to 1976, right after Stonewall and right before HIV entered the community. I remember those days fondly, but actually, I wouldn't want to live anywhere else other than Northern California.
What's the best vacation you ever had?
I've been fortunate to have some great trips to Europe, though I suppose the greatest vacations I've had have been long two-week periods high up in the Sierra Nevada on the Yuba River.
What's the biggest adventure you ever had?
A two-week rafting trip down the Colorado River in the Grand Canyon. Also several backpacking trips up and over Mt. Whitney.
What's currently on your bedside table for reading?
The Da Vinci Code by Dan Brown. I think I'm the last one to read it. I'm really enjoying the way it challenges the current religious establishment.
What book would you say has had the most impact on you?
Too many, too varied to figure that out. Professionally I've gotten a lot out of Steven Levine's Who Dies? Also Rabbi Kushner's When Bad Things Happen to Good People.
I've been a reader all my life (another impact from my mother) and have found reading to be one of the best ways to figure out how the world works, how you work and other ways to look at things.
What kind of music do you like to listen to? Who are the artists you listen to the most?
I'm not much of a music-head and thus haven't developed a particular style. I was a young person of the '60s and '70s, though, so I have a kinship with the music of that time.
Interview by Keith Green