New York State has been particularly hard hit by the COVID-19 pandemic. At this time, close to 20,000 New Yorkers have died. The deaths are impacting people from every community, including people with HIV. In April, Ed Shaw died from COVID-19. A long-term survivor of HIV, Shaw was a well-known figure in the community, particularly regarding his work on aging and HIV. To learn more about the life of Ed Shaw, Terri Wilder spoke with Kelsey Louie, M.S.W., M.B.A., the CEO of GMHC.
GMHC is the world’s first provider of HIV/AIDS care, prevention services, and advocacy. Each year, GMHC serves 13,000 people living with and affected by HIV/AIDS in New York City.
In addition to his role at GMHC, Louie is the current board president of the Network for Social Work Management. He serves on the board of NMAC. He’s also an adjunct professor at New York University’s School of Social Work.
Terri Wilder: So let me first start by saying that I’m really sorry about the death of Ed. I’m sure this is a very difficult time for people who worked with him and loved him. And I really appreciate you talking with me. I would really like to start at the beginning. Can you tell me what you know about Ed’s life, anything you know about when or where he was born?
Kelsey Louie: Sure. First, thanks, Terri, for your words of support. It has been hard. Each death is hard in its own way, and Ed was known by so many, and so at GMHC we’re not only mourning his death, but trying to help support everyone else who’s been affected by it. But to start at the beginning, Ed was born on June 28, 1941, in Mount Vernon, New York.
TW: Great. I know that he is a long-term survivor of HIV. What year was he diagnosed with HIV?
KL: Ed was diagnosed in 1988 when he was 41, at a time when AIDS was considered a death sentence and there was only one medication, AZT.
TW: I’ve read things [about] when he was diagnosed—obviously, it was a time that was very scary. He was shocked that he was diagnosed with HIV and really didn’t do anything about it for several years, but then had a heart attack and was given an AIDS diagnosis at some point. And it sounds like he kind of took that as a sign to really get involved with the HIV community in a really meaningful way. Can you talk about what his contributions have been to the HIV community?
KL: First, Ed’s contributions are both measurable and amazing. I’ll just list some of his contributions, because they are way too many to count. He served as the chair or co-chair of many groups, including the chair of the New York City Association on HIV Over 50. He was also the community co-chair of the New York City HIV Health and Human Services Planning Council. He was the community co-chair of New York State’s Prevention Planning Group. He was also the chair emeritus of the Consumer Advisory Board at GMHC and the chair of the community advisory board of New York City Health + Hospitals/Metropolitan, where he was also a volunteer and activist over 25 years.
Gosh, I think he’s also a member of the New York City Commission on HIV AIDS, the National HIV/AIDS and Aging Awareness Day steering committee, the aging HIV/AIDS and Gray Panthers committees at NMAC, and faith-based Community Unsung Heroes Awards. But again, that is just the list of things he did. His contributions, I think, far outweigh the roles that he played. He was a magnanimous advocate, a leader, and supporter of everybody who was HIV positive, everybody who was HIV positive from a poor community, everybody who was HIV positive and older. And even if you weren’t, he supported people like me, in my early days of my career as a CEO, and even prior to that. He was the type of person who, if he put his stamp of approval on something, then you knew you’re headed in the right direction. And that’s something he did for me and countless other HIV professionals.
TW: In 2010, GMHC published a report titled, “Growing Older With the Epidemic: HIV and Aging,” and Ed was highlighted in this report. In the report, he states, “Ever since I was asked to go to my first HIV meeting back in 1993, activism has become a constant and sustaining part of my life. I take advantage of every opportunity to provide workshops and presentations, engage politicians, and speak to the issues. I also make sure to have a laugh every now and then. … People call me Dr. Ed, because I am always on call, as are many other people who are ready and willing to offer support.”
It sounds like he was a really giving person. And like I said earlier, it sounds like he did a lot of work around HIV and aging. Why do you think that was such an important issue to him?
KL: So, that was a very important issue to him partly because, one, he was growing older with HIV. And two, he saw many of his peers and their needs that were not being attended to. So he took it upon himself to advocate for his peers and his friends and his family members. And he had the foresight to understand that with the advances in medications, that people were living longer, and he knew that this was a group that was not being paid attention to. And that’s something that always did—like you said, he was very giving. He gave his time, his energy, his knowledge. He gave whatever he could to make sure that other people are better off, and he absolutely saw that the older community was a group that was not getting enough attention.
TW: So, you know, Ed won many awards for his service to the community. And in 2018, when he was accepting one of his awards, he shared that, “Improving the lives of those with HIV and AIDS has been my mission and life’s work for over two decades.” And then he said, “This quote by Gandhi has been my guide: ‘We must be the change that we wish to see in the world.’” And from the list that you gave of all the groups he was involved in, and then the list I saw of all the awards he got, it’s pretty remarkable that one person did all this. It seems like he was quite the networker to be able to be involved in so many groups, and it sounds like people really wanted him to be part of their groups.
KL: Absolutely. Ed was so knowledgeable, and so giving and so caring, that his involvement or leadership in any group validated it. He was also the chairperson of the GMHC Consumer Advisory Board for such a long time, for many years. And that helped GMHC’s CAB become more active, more influential, and to make sure that their voices were heard. It was very important for me to make sure that he helped uplift the voices of those whose voices were not often heard. He gave many people opportunities. He gave many groups of people opportunities, and I think he made it his life’s work to help those who needed support, but in particular people who were living with HIV and older.
TW: When was Ed diagnosed with COVID-19? And when did he die?
KL: We know that his death was on April 20. And it was hard to tell exactly when he was diagnosed. For someone who was so public with his work and helping others, he was actually a pretty private person. And he did not share with many people that he was even ill. And so that information is hard to come by.
TW: So, I know that GMHC is planning a memorial celebration of life for Ed Shaw—can you tell me more about that?
KL: Sure. That memorial is happening on May 13. And we checked in with the community, and although there are many groups of people who want to celebrate Ed, because he was so important to the GMHC community, especially the CAB, we knew we had to do something to celebrate his life and legacy of activism. However, this is also going to serve as a chance for the community to come together. Everyone, because of COVID-19, has been physically apart. We want to celebrate Ed’s life, and to look back fondly on all of the ways he helped shape all of our lives.
TW: So it’ll be a virtual memorial, in essence.
KL: Yeah, we’ll do it through Zoom. And we’ll do our best to connect. Ed’s work lives on, even in his death. He is bringing people together. And that’s what will happen on May 13. We will all come together to celebrate and honor his life. And so yet again, he brings people together.
TW: What do you think Ed will ultimately be remembered for?
KL: That’s a hard question and an easy question. He’ll be remembered for his genuine and sincere heart, which is why he was loved by so many, including the GMHC family, volunteers, and staff. He was a tireless advocate with a mission to combat stigma, shame, and discrimination people living with HIV and AIDS faced. He also wanted to provide hope for those who felt isolated and shunned by HIV. And so he would share his story and how he used his story to help other people survive and thrive. Ed will also be remembered for being a fatherly figure to so many. Again, whether you were living with HIV and/or an HIV professional, a volunteer who was just doing their duty, he never missed an opportunity to help someone feel special or important.
TW: Thank you so much for talking with me about Ed and his life. It’s kind of amazing how much he did in his life to help the community and work really hard to dismantle stigma and discrimination against people with HIV. I really hope that the memorial is an opportunity for people to think about him and his contributions and really find some peace that day and find an opportunity to be thankful for him being in their life.
KL: Thank you. And, you know, I remember one of the last projects he was doing was a video called “We’re Not Alone.” And I think we’ll all feel that at his memorial.