Who Was Ken Steele?
This page is a collection of Ken Steele remembrances from NYC Voices contributors. The common theme is both grief at Ken's passing, and gratitude for Ken's life...
- Laurie Flynn, former NAMI National Executive Director
- Rick Sostchen, Co-Chair of the Brooklyn Mental Health Council
- Stephen Goldfinger, M.D., NYC Voices "Ask the Doctor"
- Wilfrid Noel Raby, M.D., Vice President/Treasurer, National Picnic for Parity, Inc.
- Joseph A. Glazer, Esq., President/CEO, MHANYS
- Marvin Spieler, NYC Voices Editor-at-Large
- Patrick Cody, Vice President of Communications, NMHA
- Rita Seiden, CSW, Ph.D., Executive Director, Park Slope Center for Mental Health
Laurie Flynn, former NAMI National Executive Director
Ken Steel and I became good friends -- the kind of friend you can talk to after 10pm. The kind of friend who helps you think out loud and "out of the box." Ken and I shared a passion for advocacy. Ken believed that we can and must do more to make our mental health system accountable to the people it serves. Clearly the Voter Empowerment Project and NAMI's "I Vote I Count" initiative were truly inspired. Ken knew that by organizing consumers and supporting them in voting we could make the unmet needs of consumers a political priority. To me this is truly what it means to mainstream mental illness! To gain power over our lives we must participate in our American democracy as informed and demanding citizens. I am proud that NAMI and I had the opportunity to bring this crucial message of hope to thousands of consumers across the country. Ken received an award from NAMI at our convention in San Diego last summer in recognition of his outstanding advocacy work.
But Ken was more than just an activist to me. He was a good friend, with amazing qualities of mind and heart. Although Ken had suffered terribly because of his mental illness, he didn't dwell on his past. He had a vision of recovery that he wanted to share and he was always upbeat and positive about the future. Ken had lost many years and endured great pain in the mental health system, yet he was not bitter. He frequently said that he hoped he could accomplish something good for others as a result of his experience. He only wanted to help and to heal. Because he touched so many, I believe his great work will continue. His heart failed him in the end, which came far, far too soon. But his heart has not failed those he left to fulfill his vision.
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Rick Sostchen, Co-Chair of the Brooklyn Mental Health Council
I was told about Ken Steele's passing while watching the Mets defeat the San Francisco Giants. An irony: on the day the Giants lost, I found out we lost a giant. This is what Ken was to consumers -- a giant in the advocacy movement. To anybody wondering how we will be able to go on without our beloved friend, the answer is we won't have to. Ken will always be a force in our lives, the wind behind our sails. Death can never change that. But God, I'm gonna miss him.
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Stephen Goldfinger, M.D., Vice Chair of Psychiatry, SUNY, Health Science Center, Brooklyn
How terribly strange it is to be writing "Ask the Doctor" without being able to run my thoughts and approaches by Ken Steele. Ken and I had a long relationship, and his loss leaves a strange void in my life. I'll be honest with you, the readers of New York City Voices. Ken was my first schizophrenic friend.
Of course, as a psychiatrist, I know hundreds of folks with schizophrenia, and had even befriended many of them. But Ken was my first friend with schizophrenia. (I must, I suppose, offer apologies to Esso Leete from Denver, who certainly came close and whom I've known for as long as I've known Ken, and to Howie the Harp, with whom I worked closely and shared laughs and tears.) My relationship with Ken was different. We spoke to each other virtually daily, and emailed even more often. We ate together, visited each others' homes, spoke and joked and shared some of the intimacies only friends share.
The advocacy movement has lost, in Ken, perhaps it's most articulate consumer spokesperson. Certainly, by the time of his death, Ken had become a political force to be reckoned with. The world of those mental health clinicians and academics, and the popular press, have lost a thoughtful analyst and a provocative expositor and raconteur. Of course, I lost an editor and a speaker at SUNY and a colleague. But frankly, what pains me most is that I lost a friend.
Ken wouldn't want himself eulogized and praised. This was, as he pointed out to me regularly, not about him. When I envision him sitting over my shoulder as I type, I know he'd just warn me to cut the crap and get on with our work. And so, with love and admiration and a keen sense of emptiness, I go on. Kiddo, I'm gonna miss ya.
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Wilfrid Noel Raby, M.D., Vice President & Treasurer, National Picnic for Parity, Inc.
The following was delivered at Ken Steele's memorial service, November 16, 2000 at the New York Society for Ethical Culture, Manhattan.
Thank you for this opportunity to speak about Ken. Many of you know me through my involvement with the Picnic for Parity, and this is indeed how Ken and I met. At the first Picnic in 1995, we had begun registering voters. In 1996, Ken and the Picnic joined forces to register voters, and Ken eventually expanded the Voter Empowerment Project to become what we all know it to be. But this is not what I want to talk about tonight. I want to bid farewell to my friend Ken from the perspective of what I do each and everyday: being a physician and a psychiatrist.
From that vantage point, our friendship was an unlikely one. For most of his life, Ken had viewed psychiatrists as adversaries; most of the treatments he had received had been forced on him against his will. These treatments had kept him alive, but they had not kept him well. The only treatment he chose was to take Risperdal. When his voices stopped, an already remarkable man was unmasked. Once Ken chose to remain hallucination-free, he chose to become active and productive despite a daunting delay of thirty years. So we had a lot to overcome in building our friendship, and to say that we did become friends speaks to a most remarkable trait about Ken: his ability to grow in his professional and personal life. By his growth, he also helped me grow; if nothing else, Ken was a wellspring of strength.
When I teach to medical students, I sometimes tell them that how you eventually carry yourself as a doctor emerges as a collage or a quilt made up of teachers you respected, doctors your liked, patients you admired, and lessons learned the easy and the hard way. In the collage that made me the doctor that I am, Ken's influence now looms large, and more so. It is rare in one's life to meet someone who not only had influence, but who has taken on attributes of a conscience. On a shelf in my office now stands a framed copy of Erica Goode's obituary about Ken. When I am with someone, doing my work, I catch myself sometimes looking at it. Doing so I ponder to myself what would Ken think of what I just did with this person: "Was this the right thing to do?" I ask. One does not acquire a conscience easily, nor does one loose it's source easily, at least I don't.
Maybe this is why these verses have been so much on my mind since Ken's death. The famed French poet and write Victor Hugo wrote a eulogy to a dear friend and poet, Teophille Gauthier. In it he wrote, roughly translated from the French: "With your passing, my own death begins with more solitude." It is lonely without Ken around.
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Joseph A. Glazer, Esq., President/CEO, Mental Health Association in New York State
There is a gaping hole in my life in the place that Ken Steele used to be. From our conversations about changing the world to the presence he carried each time he walked into a room, no day goes by that his absence does not call out.
For his faithful friends, supporters and colleagues, "Ken, you've gotta slow down," became a mantra. But he wouldn't. He once told me that in 1994, his head came above the surface of the water for the first time, and he had no idea how long he'd be able to stay up. He was going to do everything he could in the interim. The answer was about six years.
In that span, Ken Steele had a career that most of us can only aspire to, planting seeds that are already beginning to change the world. He started a respected newspaper, led a recovery-based outreach effort that has already prevented many young people from repeating the horrors of his own life, and sired a national voter movement. And how could we forget the one-man media machine he was?
Sitting here watching the spectacle of the presidential election as it unfolds in Florida, I cannot help but think of Ken. Nearly a year ago, Orlando was the site of the National Mental Health Voter Empowerment Training. And as I think about the activists in that state who were inspired to register voters and get them to the polls, in my heart I know that our movement tallies more than 327 votes across that state. And as I think about what that might mean, I can almost hear Ken chuckling.
The greatest tribute we can give Ken is to keep his mission alive. Ken lived to bring people together to find solutions to the current morass of our mental health system. The depth of his persistence was matched only by the breadth of his vision.
The next state legislative session approaches, and for MHANYS it will be a rededication to his efforts, goals and dreams. We will build whatever coalitions necessary, fight whatever battles required, to ensure that the needs of people living with mental illnesses are met. We will have a Medicaid Buy-in in 2001, so people living with disabilities can avail themselves to the dignity of a job. We will have mental health parity, so that insurance companies can no longer discriminate against people solely because they have a mental health, as opposed to physical, diagnosis.
We will continue to register voters and educate the electorate and the elected. We must ensure that what Ken strived for becomes more than a vision -- it must become the view.
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Marvin Spieler, NYC Voices Editor-at-Large
I feel a great loss with Ken Steele's passing. I admired his abilities and accomplishments.
After attending a few meetings of his Awakenings support group, he called me into his office. He suggested I write a column for New York City Voices. I was pleased yet very scared. However, for Ken to think so highly of me boosted my ego. Ken thought more of me than I did myself.
We made the circuit of state hospitals. Mine were local while his travels were national in scope. In a sense, hospitals bound us together.
I like to think of Ken as a brother. He was a quiet person and I never heard him raise his voice. He knew consumers, as he was one himself.
I regret now not helping out in his office. I would have learned a great deal.
He was a voice. Most consumers didn't know him and he didn't know them personally. However, his work was effective. The Awakenings support groups now exist in most boroughs.
Ken started New York City Voices as an outgrowth of the newsletter for the Park Slope Center for Mental Health in Brooklyn. Currently, New York City Voices has a circulation of 51,000.
Ken is responsible for the National Voter Empowerment Project. He encouraged consumers to register to vote with help from other consumers and mental health professionals.
Ken thought big. He achieved more in six years than any one of us could dream of.
He was on an equal basis with legislators. He saw eye-to-eye with our representatives. They on their part didn't look down at Ken. Mutual respect existed.
Ken was a consumer among consumers. He never set himself above us. By giving of himself and his knowledge he was a great help to those who knew him and countless others.
His accomplishments helped us all. His openness diminished the stigma of mental illness. His vision will be remembered and changes in the mental health system will be his legacy.
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Patrick Cody, Vice President of Communications, NMHA
Ken Steele seemed larger that life because he did so much to organize life. He not only organized his life, but often organized the lives of people around him, often convincing us of the wisdom of helping him accomplish his goals. Ken had a very big agenda, and a very large network of friends, helpers and collaborators. He worked very hard, maybe too hard, but on more than one occasion he told me he loved to "Schmooze." Ken Steele was the consummate networker. He changed the world with our help.
One of the paradoxes about Ken Steele was that even as he lived with and grew in his recovery from a very serious mental illness, schizophrenia, he was in many ways the picture of self-actualization. Ken knew what he wanted and he knew how to get it. He understood and developed his own powers extremely well, and put those abilities in the service of his goals. And he was a master at getting those around him to put their shoulder to the wheel, often on his always-urgent schedule.
Ken deeply rewarded those he loved and worked with (and I think he really loved most everyone he worked with). We shared satisfaction at reaching important and worthwhile goals (most of what Ken did was aimed at helping people like himself). We got pleasure in the teamwork (Ken always pulled together a fine cast of characters). Perhaps most important were the deep feeling that he engendered.
Ken Steele was a loving man who drew love. After his death it is somewhat surprising to learn how large a net he had cast, how many of us felt like we had a special relationship with him. The thing is, we did. Famous psychoanalysts have described intimacy as the great frontier in our lives, the scary land of always-new terrain. Ken was an accomplished explorer. He staked claims on us. And we responded, and still do.
Ken Steele's legacy of accomplishments is a living one. Danny Frey and colleagues will get the newspaper out the door. The National Mental Health Association, the National Alliance for the Mentally Ill and other groups will continue to foster Voter Empowerment programs. The Awakenings Groups will still meet. The man has passed, but his life's work goes on.
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Rita Seiden, CSW, Ph.D., Executive Director, Park Slope Center for Mental Health
Dear Ken. What would I have said and heard if I had known that you were about to die?
I am sure we would have concluded by saying, "I love you," as so many of our conversations did. But what would I have said and heard in the great middle of the conversation?
Everything about you was big: your size, your intelligence, your personality, your drive to make something out of your life after all those wasted years of mental illness, your capacity to bully and exasperate, your ability to convince that your vision needed to be fulfilled. Two weeks before you died, you asked me how could we get a personal trainer paid for. And like many of our other encounters, I knew I didn't know how, but I was convinced that you would find a way. You started New York City Voices out of a simple newsletter that Park Slope Center had conceived. It's true that the Center was there, and the idea of a newsletter, but it was your vision and relentlessness from the outset that gave birth to something very different. When Governor Cuomo signed the Reinvestment Act at Fountain House as a result of your efforts, he said: "The trouble with you people is that you don't vote." You, Ken, heard the call to educate and register mental health consumers to vote, a program now sponsored nationally by the National Alliance for the Mentally Ill as the "I Vote, I Count" Campaign and by National Mental Health Association as the National Mental Health Voter Empowerment Project.
When you decided that you needed to tell your story of recovery, it was published in Psychiatric Times and other places. Somehow you knew (or was it your relentlessness?) how to accomplish the public sharing of your recovery. Then there was the announcement of the book agent, and the deal to publish your story by the premier psychology publisher, Basic Books. And the radio and TV appearances. Yes, all along you had help and support from your friends. But most of the time I felt that we followed and supported; you lead us to what we needed to do.
But I don't want to forget the part of the story that makes its ending chapters even more remarkable. You came to me in 1991, more or less mandated to get care by the agency providing your housing. You were a veteran of psychiatric care, most of which had been of dubious benevolence. Whenever you came to see me (which was never as frequently as it was supposed to be), you brought a psychotic whirlwind with you: full of tales of a dead family, a dead heir-to-a fortune lover, a career possibility at The New York Times, a need for special accommodation to smoke in session. Between visits there were frantic and paranoid phone calls. And then you disappeared, calling from out-of-state demanding refill prescriptions!
When you returned to the Center about a year later, my staff didn't want me to take you back. "Are you sure this is wise?" I was asked. Honestly, I didn't know if it was wise. But I knew there was something compelling about you. When you were started on Risperdal in 1994 by Dr. Casimir, it became apparent what was there within. And yet, there were many psychotic and tumultuous hours in the early recovery year. There was more than one time when I said, "I don't think I can do this"; and yet it was mixed with sufficient evidence of your astonishing abilities to be sane, loving, connected, and intelligent that I found that I could continue as therapist, confidante, and colleague.
Just yesterday, hours after we discovered that you had died, Dr. Wilfred Raby, told me that he had learned from you about mental illness. And, maybe more than anything, that is what your taught me: to learn from the patients -- they know more about their illnesses than the professional does; be respectful of what the patient knows; be there, and the patient will show you the same love and respect.
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