Ed Shaw

At first glance, there's not a lot that's all that different about Ed Shaw. Like many other AIDS activists, he's articulate, well-informed, passionate. It's only when you find out that Ed's particular area of interest is advocacy for seniors with HIV, because he is a senior with HIV, that he begins to stand out.

A handsome African-American man who looks as if he is carrying a lot fewer years than the 59 he will mark in May, Ed Shaw is impressive by anyone's standards. Diagnosed HIV-positive in 1988, Ed has traveled a long and winding road to get where he is today, a beacon on the path for others with the virus, especially older people.

Starting Down the Road

Ed was working as a job placement counselor at a city agency when he first tested positive. He abruptly quit his job. Ed remembers his first contact with an HIV counselor like it was yesterday. "Anger and disillusionment flared," he says. "Logic and rationality were the farthest thing from my mind. Death was seemingly only weeks away."

For the next five years, Ed took no medication for his HIV and plunged into a life sustained by alcohol and drugs. It was a life full of stress and depression, isolation and negativity. For five years, it was a life punctuated by hospitalizations and bouts of illnesses -- Ed had PCP, bacterial pneumonia, thrush, and any number of other opportunistic infections. Then came a month's stay in Cabrini Hospital with respiratory failure following a mild heart attack. This may not have been Ed's first hospitalization, but this was "the hospitalization that woke me up."

For the first time, Ed faced his HIV infection, and began following a treatment regimen and talking openly with others about what was going on with his health. Ed recalls, "The medications provided hope, opportunity, and a second chance for life." Just as he'd earlier plunged into alcohol and drugs, Ed now gave himself over to sobriety and recovery. He began asking questions about his health and searching for answers. He tended to the needs of his body and mind, and he began to pay attention to the issues.

An activist was born.

Positive Steps

Ed's outside involvement began as a volunteer at Metropolitan Hospital, where he started off counseling other patients with HIV and helping them navigate the hospital's systems. Actually, Ed prefers the word "consumers" to "patients"; he believes it's more accurate. To the casual observer, this choice of words may not seem very important, but Ed is drawing the distinction that consumers make informed choices about their healthcare needs, while patients are simply treated. In the HIV lexicon, language is important because it reflects a way of looking at oneself and the world that contributes to the state of an individual's health.

The volunteer seed quickly sprouted into other kinds of activities at more and more organizations, including serving on client advisory boards at, among other places, Terence Cardinal Cooke Health Care Center, the Momentum AIDS Project, Harlem Hospital, the East Harlem HIV Care Network, Praxis Housing, and Gay Men's Health Crisis.

Making Strides

Ed's real passion is advocacy. Right now, Ed is part of a group that educates doctors and other hospital staff people about consumer issues, particularly those of seniors with HIV. Ed says that many doctors are blind to the possibility of HIV in seniors, never for a moment considering that many older people lead active sex lives, and even use intravenous drugs. These doctors often misdiagnose physical ailments -- tiredness, weight loss, memory problems -- as the symptoms of aging, because they fail to realize that these people who look like their parents are at risk for HIV. For this reason, seniors often miss out on the benefits of early diagnosis of their HIV infection, losing the opportunity for early intervention in the disease process or to make healthy changes in their lives that will enable them to stay healthier longer.

Ed believes there is a high HIV risk factor for seniors because most people -- including doctors -- do not think of them as having sex or shooting drugs. In reality, he says, there might be more risk, just because there is so little consciousness around this issue. Also, a fair number of seniors have sex with younger people, people who may themselves be in the traditional high-risk categories for HIV. And a part of the problem, Ed believes, is that seniors themselves buy into the view of the larger society and don't protect themselves during sex because they don't think they need to. Ed sees this belief reflected in the eleven percent of the HIV-positive population nationwide that now consists of people over the age of 50, and the fifteen percent they constitute in New York.

Ed is out to do something about that by bringing seniors to the same consumer table where other high-risk populations sit -- teenagers, young gay men, and poor people of color. Ed believes only in this way can things change significantly. Ed devotes a large amount of his time to this end. He belongs to the New York Association on HIV Over Fifty and serves as a Community Advisor to the senior population for the New York State Department of Health. Ed has been instrumental in the creation of a pamphlet on prevention and services for seniors. To be published soon, the pamphlet will be distributed to senior centers around the state. Ed also serves as a Community Liaison to the POZ Life Expo, being produced this April, ensuring the inclusion of seniors and their needs in the targeted audience. Ed will arrange for the busing in of seniors from around the tristate area -- a task with which he has ample experience as a result of the many lobbying trips for seniors and others with HIV that he regularly arranges to Albany and Washington, D.C.

Ed is tireless in getting the word out and doesn't stint in his personal appearances, often giving inspirational talks to neighborhood, church, and college groups based on his own experiences as an HIV-positive individual, in and out of both denial and recovery. Ed says he got his Ph.D. at UCLA -- "the University of the Corner of Lenox Avenue." With this diploma in his pocket, and with his extraordinary drive and his heartfelt commitment, Ed is a true champion for seniors living with and at risk for HIV. All of this from a man who twelve years ago thought he would be dead in a few short weeks.

As Advocate Ed says, "We must speak up, speak out and speak often." This isn't important only on the lobbying level; for Ed it seems to have been the gift of life as well.

Tom Weber is Coordinator of the Buddy Program at Gay Men's Health Crisis and a frequent contributor to Body Positive.

Back to the March 2000 Issue of Body Positive Magazine.