New York City activist Ken Robinson has been busy the past few decades. He has worked in a prison directing a drug treatment program, led a large supportive housing program, was the executive director of a consortium piloting a study to evaluate the efficacy of overdose prevention centers, and recently helped to open a COVID-19 quarantine shelter for homeless people. Along the way, he learned about the crippling effects of bigotry, discrimination, and hatred. He attended protests to demand services for the people he loved and served and was as comfortable in legislative meetings as in the streets getting arrested.
But in April 2020, Robinson got sick with COVID-19. Fearing for his life after falling very ill, he had an epiphany. He realized the most important things in his life are his husband and their "fur kids" in their home. He told himself that if he got on the other side of COVID-19 alive, he would reevaluate his priorities and figure out a way to stay home. Robinson made the decision to retire from work on June 30 and start his new journey. Robinson sat down with Terri Wilder to talk about his history, how far we’ve come with harm reduction, and supporting people living with HIV, hepatitis C, and substance use disorder.
Terri Wilder: So Ken, thanks for joining me today. It’s actually hard to even know where to start. So let’s start at the beginning. Can you tell me about where you were born and what it was like for you growing up?
Ken Robinson: Sure. And thank you, Terri. I am originally from Arkansas. I was born in a small town. But when I was just a little kid, you know, less than 5 years old, we moved over to Memphis and quickly moved to West Memphis, Arkansas. And that’s where I spent most of my formative years—in West Memphis, Arkansas. You know, that was a long time ago. I’m 62. And so, certainly, I grew up in kind of a racist, homophobic environment. It’s probably still like that down there now, but it was probably even worse then.
TW: So was your family a political family? Was it ever involved in social justice issues? I mean, you’ve been involved in so much. I’m just kind of wondering where did the spark come from, for you to be such an activist involved in so many things?
KR: You know, I’ve often wondered that myself. My family wasn’t particularly politically active. My dad voted. He was always voting on the very conservative side. My dad was pretty racist—he supported George Wallace. I think I grew up, though, with an awareness of what was going on in the ’60s with the anti-war movement and the Civil Rights Movement and at a very young age, somehow, really identified with that and fought with my dad about it for years and years to the point that he finally respected my point of view and at least quit talking in a racist way around me.
The first thing I did was at about the age of 18 or 19. I was a student at the University of Arkansas, Little Rock, and they were allowing the Ku Klux Klan to have a rally there, and that incensed me at that early age. I got involved with a group that was going to protest, and I went and protested the Ku Klux Klan there. And actually, there was a small group of us that went in to hear David Duke speak. And that was a scary night there when that was over. I think it would have been bad if there weren’t so many police there. There was a large crowd of protesters that gathered. And that was very inspirational for me, I think to start it there. And then, you know, as you mentioned, continued on over to Housing Works.
TW: So, you are a New York State credentialed substance use counselor and a former IV drug user. Can you talk about that experience and how much that may have informed the work that you did, particularly when you worked at a prison? And in your work that you’ve done for so long at Housing Works.
KR: I consider myself to be in recovery. I practice harm reduction. I learned through trial and error that the harm reduction tool that works best for me is abstinence. And I’ve been abstinent for over 20 years now—much longer than that for IV drug use, probably 25 to 30 years since I’ve used IV drugs. At a very early age, I started using drugs intravenously and did it for five, seven years, I’d say, and saw people all around me die and go to prison. So at some point, I successfully swore off the needle, but all the other use continued until I was about 30.
I’m living in Wichita, Kansas, at the time, and I got a DUI and that was the catalyst for me to get into recovery. I had gone to college, as I mentioned, right out of high school, but that wasn’t very successful because of working full time and using heavily at the time. So when I went to treatment and got sober the first time, I went back to college, and that inspired me to become a counselor. That’s what got me into this kind of work, actually—it was going into recovery. And realizing I wanted to work with other people that were having substance use disorder issues—and then also was very inspired to do work with people with HIV.
TW: I knew that you worked at a prison and ran the drug treatment program there. Tell me what that experience was like for you.
KR: Sure. I actually worked in a prison—the first time was in Arkansas, and I was working in a women’s prison where everybody that was sentenced to this particular institution came there for drug treatment. Then from there, I moved to Delaware, where I worked in a prison in Dover, Delaware, and from Dover, I went to Wilmington, Delaware, and I worked in a more high-security prison there. I always enjoyed the prison work, because I really like working with the inmates.
There was certainly a downside to working in the prison, and that was just working with the Department of Corrections itself. Often, they had a bad attitude, they felt like it was a waste of taxpayers’ money. And sometimes because of that, the COs [corrections officers] can really have an effect on your day to day, on your ability to do your job. So I didn’t like that part of it. And so, even though when I was in Wilmington, Delaware, working in that prison, I in many ways liked the job but had my ear to the ground, to move on to something else if it came along—but wasn’t actively looking. And I was up in New York City just for a weekend, and that’s where I noticed an advertisement for a job at Housing Works.
TW: So tell me about your first job at Housing Works.
KR: The advertisement that caught my eye was in one of the gay papers, and it was for the program director of the transgender transitional housing program. And I thought, you know, that just sounds so amazingly cool to me. I have always, for whatever reason, been connected to the transgender community. When I was in Little Rock, Arkansas, I was very connected there. And so, because of my history, that particularly caught my eye, so we got a program started that was for people who identified as transgender. Virtually all of them were folks of transgender experience that were trans women. And we leased 20 apartments in Brooklyn where they could live and also receive supportive services, case management, and then got them into whatever services they needed. It was a wonderful, wonderful experience. They taught me so much.
You know, as a gay man, I thought I knew a little bit about hatred and bigotry. And I discovered working with them that I knew very little, because it was just so heartbreaking to me that most of these were transgender women of color that were often struggling with substance use issues, transphobia, poverty, other social, structural things that were really to their detriment. And, you know, they had to literally walk out the door every day, ready and willing to fight just to exist. So that inspired me, too, to work and do everything I could for them. Even though I moved on to another position at Housing Works, that program stayed in my portfolio. So I remained close to it for 15 or 16 years.
TW: You mentioned that later you went on to another job and that was also related to housing. Can you tell me a little bit about that and maybe how it was a little different from what you were doing with the transgender program?
KR: Sure. When I was the first vice president, they created a position, and I guess I didn’t really have to compete for it. So I was the first vice president of housing operations for Housing Works. And so the big difference was that I was over so many more units of housing, and kind of contingent upon the funding sources that kind of define who we work with. In one case, it was HIV-positive women just getting out of prison. And then another contract was with the New York City Department of Health and Mental Hygiene, where whomever we admitted had to have an active substance use disorder, diagnosis, etc. I think at the height of that, I had about 450 units of housing in my portfolio and about 70 employees, and that’s what I did up until the time that I accepted the position of executive director for Research for a Safer New York.
TW: I want to talk about those experiences of being executive director, but I also wanted to just quickly mention—on your Facebook page, you have tons of pictures at different protests and awareness events. And one of them is of you being arrested wearing your “Truth Pharm” shirt, and the names that can be seen on the shirt are the names of deceased loved ones that were taken away too early by overdose. Can you tell me about that action?
KR: Sure. So I’m gonna jump ahead a little bit to talk about the overdose prevention center initiative, because that is relevant to your question here. But one of the great things about that job as the executive director of Research for a Safer New York was that I got out of New York City and I met people across the state. And there is a breathtakingly wonderful program called Truth Pharm. And this is by a larger group of women who have lost their sons to overdose. The executive director of it, her name is Alexis Pleus. And Alexis founded that based on that experience that she had herself, her son died of an overdose. So that shirt was when I went there for their annual event.
It was one of the most moving things I’ve done in my entire life, and so I thought it was really appropriate and poignant for me to wear that shirt at that action that you’re talking about. I was in front of the governor’s office to protest him just totally ghosting us on the overdose prevention center initiative. You know, the governor had promised that he would authorize overdose prevention centers through the health department to the point that we even had the draft letter from the health commissioner they let us look at. And then they just went away, they completely went away. So we were targeting the governor that day, and we had a really amazing action there in front of his offices.
TW: So, as the executive director of Research for a Safer New York, you worked with other harm reduction providers to establish a pilot, a research study in the form of the operating of five overdose prevention centers in New York. Can you tell me a little bit more about this pilot?
KR: Sure. So a lot of folks probably remember that syringe exchange started in New York state through this model, through a research pilot that authorized syringe exchange just for the purposes of the research pilot. And then the data came in so overwhelmingly in favor of syringe exchange that they authorized. They made it legal. So we were looking to replicate the same model. And so that’s what this was. We already had a world-renowned epidemiologist from NYU, Dr. Holly Hagan, who was on board. And we were going to gather the data from these five sites for New York City and one in Ithaca. And we were confident that the data was going to support overdose prevention centers, because overdose prevention centers have been studied through very solid, scientific, empirical investigations many, many times and the data couldn’t be clearer. They save lives, they save money, they become the primary entry points to get especially indigent populations into treatment and into care. So we were confident that the data would look the same here. And then that data would lead to the authorization of overdose prevention centers throughout the state of New York.
But what I had to primarily do since we hadn’t received authorization yet, we had to work hard with the state to see if we can even get the governor to keep his word and authorize it—or to do it legislatively. So we didn’t get to the point where we could actually start the research, because the first thing we had to do was get it authorized.
TW: So what is the status now?
KR: The pilot, like so many other things, came to a screeching halt when the [COVID-19] pandemic [hit]. We started this year with a lot of momentum. I felt very optimistic actually that we could do it legislatively. We had champions in both the Senate and the Assembly. I might mention Linda Rosenthal on the Assembly side and Gustavo Rivera on the Senate side. They were very much championing this initiative. And so, you know, obviously if we were to pass it in the Senate and the Assembly, it would still have to go to the governor, but we thought the governor would sign it under these conditions because the bill coming from the legislature would give him political cover. I don’t know what they’ll do, now that I’m gone. I think we have to wait for the dust to settle from the pandemic, before they can decide. But again, it’s still not authorized, and we can’t start. Nobody will fund the research study while it is illegal; we have to get it authorized before we can start the research pilot.
TW: So, overdose prevention centers obviously have a lot of benefits for community, and they’re lifesaving in many different ways. Like you mentioned, they’re an entry point to be connected to treatment and care, and it makes me think about how important it is particularly within HIV and hepatitis C epidemics. In terms of the hepatitis C epidemic, what do you think are some of the victories we’ve had? What do you think are some of the things that the community needs to keep fighting for?
KR: My husband and I were just discussing this. My husband Archie is an HIV doctor. And he works very, very closely with people that have hepatitis C. And certainly, it’s been amazing the progress we’ve made medically, you know, it used to be almost a death sentence. And then the treatment for it was so debilitating, to now where it’s very curable. The thing now, though, is that we have to continue the initiative to get out into the indigent and the homeless population, and being able to do outreach and testing. So it would be such a crying shame if because of the pandemic the governor starts to ignore the recommendations of the hepatitis C taskforce. If we aren’t able to continue that, hepatitis C could really, really start to proliferate once again, especially in our indigent and homeless population.
TW: Yeah, I’ve talked to some other hep C folks who serve this particular community, and because of COVID-19, they weren’t able to test people. Or the folks who were tested positive for hepatitis C, like literally right before the shutdown in New York—and then they weren’t able to get connected to care. And I’m wondering if you could share not only how COVID-19 has impacted you personally, but as well how it impacted you professionally when you were asked to help with this housing initiative?
KR: So, like I mentioned, it felt like we had some momentum with the overdose prevention initiative. And I had a lot of stuff in my schedule of meetings with legislators and doing presentations. I got invited to speak to the Hispanic Caucus, I had all this stuff in my calendar, and then—boom—everything stopped when the pandemic [hit]. And so at first there was work I could do at home, and I was working at home. And I wasn’t going out anymore. Nobody was meeting with anybody, and everything got canceled.
And so I’ll never forget, it was a Thursday afternoon, I got a phone call from Charles King, the founder and CEO of Housing Works, and he’s also the president of the board of Research for a Safer New York, and Charles told me that he wanted to redeploy me to head up an initiative to start quarantine centers at a hotel. It was an initiative between Housing Works and New York City Department of Homeless Services. The agreement or the contract with DHS was that we had to be ready to go really fast. And so we worked hard, and I still can’t believe we pulled this off, but we managed to get ready to go bring in about 70 people and get them ready to work at a COVID-19 quarantine shelter. We did it in less than a week.
And then it was a Friday—that was going to be our first day of operations there. And I kinda in the back of my mind knew I was getting sick, when I did not want to admit it to myself. I was feeling bad. So I went ahead and left staff ready, everything was ready. And it was that night on the way home that I really, really started to realize how sick I was getting, to the point that, I live on Long Island and by the time I got to the Long Island Railroad station, I started to feel so bad I could barely walk. I barely made it home that night.
And that was during the time where they were saying, “Whatever you do, don’t go to the emergency room, unless you’re just on death’s door.” In hindsight, I should have gone to the emergency room, but I didn’t, I stayed home. And that’s when I had a bit of an epiphany—that I was turning 62—I knew I could start Social Security, and I decided that if I made it through COVID-19, that I would figure out a way to stay home. And that’s when I decided to retire.
So, obviously, the way it affected me professionally led to how it affected me personally. And, you know, my husband and I have several dogs. I don’t like to say how many—people will think I need to be on Animal Hoarding. So that’s another passion I have, to work with dogs and rescue dogs, and so I’m going to shift some of the focus of my activity into working with our dogs and other rescue dogs.
TW: Well, Ken, it’s been a pleasure hearing all your stories and just how active you’ve been. And if I remember correctly, I feel like I saw something on your Facebook page that said that you have worked since you were 12 years old. So, you know, for some people 62 is early retirement, but for you, it may be right on time.
KR: I never thought of it that way. That’s a good way to put it.