David Hilton Changed the World

His Anger Killed Him

David Hilton Photo in David Hilton Memorial Conference Room, NH Bureau of Behavioral Health
David Hilton Photo in David Hilton Memorial Conference Room, NH Bureau of Behavioral Health

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Plaque in David Hilton Conference Room
Plaque in David Hilton Conference Room

When I met my friend David Hilton in 1997, New Hampshire had the best mental health system in the country.

The bureaucracy wanted to be recovery-based, but did not know how. David Hilton, a survivor of forced treatment and confinent, and a leader in the growing national consumer rights movement,,  taught them most of what they knew about recovery and empowerment.

When I got downsized at my newspaper in ’96, I decided it was time for me to devote part of my life to mental health activism. In New Hampshire, David Hilton was the person to see about that.

David Hilton’s Reforms

David Hilton was the nation’s first director of a state Office of Consumer Affairs. He started the NH Mental Health Consumer Advocacy Council (“Consumer Council”), introduced recovery to staff education at agencies, and started a statewide network of consumer-run peer support centers.

David recruited Shery Mead to start a peer support center, including a non-medical, peer-run crisis intervention center, before she became nationally famous as a theorist and advocate for peer support.

David Hilton Made NH the Frist Stat to Import Mary Ellen Copeland's Recovery Training (WRAP)
David Hilton Made NH the Frist Stat to Import Mary Ellen Copeland’s Recovery Training (WRAP)

At his urging, NH became the first state to adopt Mary Ellen Copeland’s Wellness and Recovery Action Plan (WRAP). I took her 40-hour training at state expense.  Then,  I learned to teach WRAP with sate money David Hilton got me.

He got me scholarships to national consumer conferences, where I was exposed to leaders like Judi Chamberlin, Dr. Dan Fisher, and Joseph Rogers, who challenged the disease model of mental illness — people NAMI and the psychiatrists called. radical and anti-science.

Before I met David Hilton, all I knew about mental illness was chemical imbalance, brain disease, medication, and NAMI.  I knew I had a mental illness, and had done more with my life than than the doccs who first treated me thought I could thanks to medication, discipline, patience, and family support.

David Hilton Made Me a Consumer Activist

Ken Braiterman Conducts Recovery Workshop with NH Hospital Staff
Ken Braiterman Conducts Recovery Workshop with NH Hospital Staff

When I met David Hilton at my first Consumer Council meeting, I noticed his big, trombone voice, the brilliant, creative way he put words together, and the way consumers at the meeting listened to him.

He was saying things about mental health and the mental health system I’d never heard before. Right away, I wanted to know him, and what he knew.

After the meeting, I walked him back to his room at the state hospital. He was an inpatient on a 4-hour pass, very nervous about getting back on time. Fear of authority, and being 10 minutes late, did not jibe with the fearless leader I met at the meeting.

David Hilton was re-admitted to the hospital every 18 to 24 months. He’d stop taking his psych medication, and he never made an effort to curb his abusive drinking.  Some people who knew David longer and more intimately than I did believe alcohol abuse was David’s primary problem, not a brain disease or severe emotional distress.

In his hospital room, I asked one ignorant question after another, like what’s so bad about NAMI?  He indulged my ignorance, and answered patiently and informatively.  He must have sensed a disciple in the making.

I’m nobody’s disciple, but, as a news reporter, I knew the only stupid questions are the ones you don’t ask because you’re afraid to sound stupid.

We became close friends fast, and I was soon elected to an unexpired term on the Consumer Council executive board.  I became secretary at the next election, and Council chair when the chairman resigned

A Big Fish in a Very Small Pond 

I also started going to other mental health policy committee meetings.  The NH mental health system is very small.  After two or three meetings, everybody knows you, and they invite you to everything.

I went to everything at first because I was so flattered to be asked. That quickly got to be too much, so David Hilton helped me choose and prioritize my policy advocacy and committee work.

All the bureaucrats wanted consumers on their committees.  It was politically correct, and often a requirement of their grant.  But there were not enough consumers to go around.

To participate, consumers needed reliable, unreimbursed transportation to the state capital, an unpaid day off work, and the ability to sit as an equal with people in suits, with advanced degrees, whose offices were down the hall or across town, who were paid to be there.

I did it because it was interesting. I was unemployed with a reliable car and enough money.  I’d been active in every civil rights/identity movement since the Southern civil rights movement in the ‘60’s, and it was time to get involved with my own.

My parents and grandparents were activists. All my adult experience as a journalist, protester, and change agent had prepared me for this movement.

The Dynamic Duo

As an activist team, David and I played good cop/bad cop with the bureaucrats. As the good cop, I sat in the room talking to them, and David Hilton stayed out, feeding me facts and ideas.

Part of my job was to translate his good ideas into proposals I could sell. Politics is the art of the possible.  You settle for a little at a time until you have all you want. A good change is better than a great idea.

Our adversaries liked and respected me because I treated them like I wanted to be treated, and brought in reasonable ideas.

They respected David Hilton’s brilliance, but could not stand him.  He always had something interesting and important to say, even when he was wrong, but he was rude, divisive, and a  know-it-all in their eyes.

Like many people driven by passion and ideology, David Hilton’s enemies were clearly defined in his mind: psychiatrists, NAMI, drug companies, CMHC’s, the “medical model,” and mental health bureaucrats. (We are now calling the medical model the disease model because recovery is evidence based, too.)

The Old Guard called him a radical, which he hated.  He thought that label was the enemy’s way of marginalizing him.

He never stopped to enjoy seeing the enemy adopt his ideas. Like Jackie Robinson, who also died young, David Hilton did not care how about far we’d come, only how far we still had to go.

David’s most radical ideas are mainstream now. Maybe he would have been less angry if he had taken time to enjoy his successes, but everything the enemy did was the wrong thing, the wrong way, not enough,  or too slow.  And the system still forced medication, and presented it as the only option for everyone, not one of many.

Our adversaries in the system were my opponents, and David’s enemies. My good cop and his bad cop were our true natures, not a pose.

David Hilton and I were a dynamic duo in another, less positive way.  He ran hot and cold more than I did, and his moods were less predictable.  On good days, he acknowledged that the movement needed both of us, and how well I played my role.

On his bad days, he’d accuse me of substandard zeal, and giving away too much to make the enemy like me.  He was always giving me litmus tests. There must be something wrong with me if the enemy liked me and I did not hate them.  I never questioned David’s sincerity or value to the movement, though we often disagreed on tactics.

To me, a cordial relationship with the adversary was good for the  movement: your adversary now could be your ally later, and your adversary on one thing could be your valuable ally on something else.

This was particularly true of our state NAMI director, who was consumers’ ally on practically everything, and understood and respected us when we could not agree.  I thought David Hilton treated him atrociously, like the embodiment of NAMI, not Michael Cohen, the most progressive NAMI director in the country. I did not see how rudeness to a guy like that helped consumers.

These constant litmus tests were so unfair to me , such a waste of my time, and I resented it. But arguing with David Hilton, and defending yourself, was part of being a consumer leader.  It was part of the fun because, right or wrong, fair or unfair, he was always so interesting.

David Hilton’s Good Anger and Bad Rage

David Hilton never overcame the anger connected with his forced treatment and confinement in the big state asylum in his late teens and early 20’s.

He never resolved the conflict of working for incremental change in a system he wanted to destroy and replace with something totally different. The system had harmed him, still harmed people, and would never reform itself, he believed. He criticized me for wasting my time talking to them.

David Hilton devoted his life to changing the system that traumatized him so badly.  That was good anger.  The system changed a lot, but not enough and too slow for him. That was productive anger.

When he died, the steady progress was stalled, and feeling stuck or pushed back  triggered terrible rage.

His drive to make things better led to changes that still do a lot of good for a lot of people, but it left him too angry to enjoy his successes or reach his 50th birthday.

Who inspired you like David Hilton inspired me, and what motivates your work for change?

 Part 2 will explore David Hilton’s anti-medication ideology, his refusal of treatment, distress history, alcohol abuse constant relapses, his death, and if alternative approaches to the disease model might have prolonged his life.

 

 

 

http://wellnesswordworks.com/david-hilton-part-2-good-anger-bad-rage/

10 Comments for this entry

  • Pat says:

    Ken, I am so proud of you for being able to write this piece. I have read part one and will have to wait a few days to read the next part.

    I truly loved Dave as a person, friend, advocate and teacher.

    He taught me so much in a short time and I still wonder if going back would make a difference.

    Great job. Pat

  • Ken!Brait1 says:

    Erik Riera is director of the NH Bureau of Behavioral Health:

    Thank-you for sharing this with me. I understand how difficult this was for you to write, even after all of these years.

    I think you were able to capture the oft-times competing realities for David — on the one hand trying to promote change, support people, be a friend, a mentor, and leader,
    while at the same time taking an approach that often accomplished the very opposite.

    I feel lucky to have had that opportunity to work with David for several years. I was disappointed to see his role change at the Bureau, but also saw him seize the moment, and make the best of this change for himself and others.

    As tough as he was to work with sometimes, and as many times as we disagreed, I always felt he was trying to do the right thing, until the end when he died.

    I don’t know if that is something any of us can move past. What he did didn’t just end his own life. It felt to me, and still feels, so senseless, and admittedly, I still feel angry.

    I think your article was able to capture those conflicting feelings, and I thank-you for taking the time to do this. I
    hope it brought some closure for you.

    I still look to you as a leader for consumers, Ken. You have made a lasting impression on my own career here, and your continued words of wisdom have likely helped shape policy in the state in more ways than you are aware.

    What makes you unique from people like David is your ability to bridge gaps and work with people with whom you may not agree. I have found that you are someone who looks for ways to come to common understandings, and find common ground, through mutual respect for each person’s experiences.

    That is something that goes well beyond what David was able to do, and something you should be very proud of.

    • Ken!Brait1 says:

      I’m extremely flattered by Erik’s high opinion of me. He is a kind, gentle, almost meek soul. He has good values and wants to do the right thing, but usually lacks the power and resources to do it.

      I told him, when I read his comment, that anything he thinks I taught him about the mental health system, I learned from David Hilton. I guess that’s the point of this story: I expressed myself in a way Erik could hear. He could not hear the say hme message from David, who was too angry, accusatory, and confrontational.

      Most decision-makers in the mental health system reacted to David the same way, though most also respected his brilliance. Being marginilized by co-workers must have shortened David’s life.

  • Ken!Brait1 says:

    Geoff Souther preceded Erik Riera as director of BBH:

    Your series is powerful, chilling, and resurrected many memories of David.

    He was one of — if not THE — most brilliant persons I have known. He was, on a good day, aggravating, infuriating, and always 20 steps in front of me, let alone the “system.”

    Regardless, he was always pushing us to change our way of thinking, our way of acting, and, as a result, there was a great deal of positive change…never enough, never enough, never enough.

  • Ken!Brait1 says:

    Ken Norton is director of NAMI NH:

    Thanks for sharing your personal reflections on David. It is not something I feel real capable of responding to in writing as it brings up a lot of mixed thoughts, emotions and memories.

    I will say briefly that many of your perceptions and observations were consistent with my own. Some were different. While I knew him for a much longer period, you knew him much better than I did.

    As you and I have discussed in the past, I too had passed the litmus test. Though I am not sure why I passed, it did carry a lot of credibility both in peer and professional circles.

    There were times when he would solicit my opinion about peer/professional initiatives.

    Also as I have told you before, I was deeply appreciative of your comments (question) at his memorial service. It was grounded, and brought him back to earth as the complicated human being he was (and we all are) as compared to the unfiltered adulation that all the previous speakers had engaged in.

    Still processing all this a few days after reading your blogs, and I imagine I will be for some time, but did want to reach out and touch base. Nice to see your writing skills are as sharp and insightful as ever.

  • Ken!Brait1 says:

    I heard from several NH Hospital employees who worked with David as an inpatient. They could not comment by name because it would violate patient confidentiality.

    When David was dragged in against his will, he was terrifying and fierce, a big guy with a loud voice, who yelled, challenged, defied, and threatened them. Some employees only remember that wild, snapping tiger. Others also remember th4e funny pussycat he morphed into as he stayed in the hospital and calmed down.

  • allan feinblum says:

    Nami national office in Virginia , to the best of my knowledge critized several drug companies including Glaxosmithkline , pfeizer , merck for being fined for illegally promoting off label use of their drugs. In all cases it appeears t6his illegality produced profits that more thanexceeded the fines imposed. Nami receives a large part of their assets from drug companies and i hope this fact does not influence in representing consumers such as myself.llan feinblum Brooklyn, New york

  • jeanne peschier says:

    Just found this today. I still miss Dave very much and wish I could have known him at least a little longer. He had asked me to go to Spokane with him, but I couldn’t because I had to work (NH Citizens Alliance at the time). He had been calling me nightly from Spokane, and when I didn’t hear from him for one day, I called to check on him-to be told that he was dead- hit by a train. It is something that will always haunt me. Everytime I hear the song “Superman” I think of him. I think he would be happy that the Peer Support Agencies are still there for consumers who need them. But I think he would be very distressed at the lack of a strong independent consumer advocacy/activist movement in New Hampshire since his passing. I have taken 10 years off from the scene (other than testifying against budget cuts in Concord, etc…) to do direct care work, political community organizing; and also, for the last 5 years, to recover from severe depression/substance abuse/etc. I now live in Manchester and have decided to dive back in (where even some angels would fear to tread), starting an advocacy group here in Manchester (there is NONE!), and hopefully an independent statewide consumer advocacy organization. Even though David is no longer with us- he can still guide us by what he has taught us and in spririt- if we let him! What did I learn (yes- the hard way)?:
    - The goals of the group/movement comes before individual ego or the group will be divided and conquered. And there is NOTHING that a group of like-minded, committed individuals can’t accomplish!
    - Stand Your Ground.
    - Do NOT allow yourself to be bought- by power, attention, money- ANYTHING!
    - You have to be able to laugh at yourself
    - Respect, patience, acceptance (he realized that we’re all a work in progress), and tolerance are essential ingredients.
    - Good leaders do not try to control other people.
    - Be the change you want to see in the world.
    Thank you Dave!
    In his Memory- I think we should do something for the 10-Year Anniversary of his death.
    Feel free to contact me at jpeschier@ymail.com if you are interested in what we’re doing. Thank you.

  • jeanne peschier says:

    Found out today that Karen Carter also passed away. I have to say I’m really missing these fearless (and angry, yes) advocates who worked tirelessly (and obsessively, yes) for the better treatment of people with mental illness. “Intentional Peer Support” and “WRAP” are great recovery tools, but what happened to the strong consumer advocacty/activist movement in New Hampshire and in the U.S.? I know there’s a severe funding shortage, but I’m wondering if all the focus on Peer Support, etc. undermines consumer activism to address civil rights issues: discrimination, poverty, separate but equal, services that suck, etc. Can’t we have both? Anyway, if there are any empowered consumer advocates left in NH (I know there’s at least a handful), or people who want to become empowered, the Manchester Advocacy Group and Information Council (MAGIC), a new/restarted independent consumer advocacy movement is having its first meeting next Wed., 2/13, at 10:00 AM. E-mail us @ magicnh@yahoo.com for location and directions. In memory of Dave and Karen, and for all the people who are not able to fullfill their true potential because of discrimination, it’s the least we can do!

    • Ken!Brait1 says:

      Your two comments go together in my mind, Jeanne.

      When David Hilton, myself, and Bill Quinn (whom you never appreciated for reasons I never understood) were leading the recovery/empowerment movement, we did have the double focus you speak of. For many of us, activism was grew out of their personal recovery. For others, one had nothing to do with the other. Not everyone can be an advocate or activist.

      I was an activist for decades for other causes before I became a mental health activist, and it was natural, after all those years in all those good causes,to become active in my own. I knew things about being a successful activist against great odds that many of our people did not, because I had seen so many other movements succeed.

      Looking back, it was kind of a golden age for the consumer movement in NH.

      It’s too simple to say activism dried up when the money did. The state repressed the movement. When David and Bill quit the Bureau, the state did not want to replace them. We forced them to. So they hired a director of OCA, not knowing what they wanted her to do. They just knew they wanted nobody like David or Bill. (They tried to recruit me when David quit. I turned them down, and recommended Bill.)

      They hired a very qualified (on paper) director who was out sick half the time, who did everything she could to kill the Council when she was working. Consumer leadership was factionalized and inexperienced. We barely saved it. They brought me out of retirement (NAMI NH) to rally the troops, but the real credit goes to Shirley McDougald and Kim von Wedel, who stuck with it and refused to quit.

      But we were finished as effective advocates. The system had shown us who was boss, and our leaders did not have the desire or know-how to resist. They even let the Bureau set the Council’s agenda, and choose their speakers, while the state let them know that a consumer leader who got out of line could expect reprisals against their peer support center.

      They even closed a couple, including the one Bill Q and I started. The Council chair defended the state’s decision, and I quit the Council. He told the Council he was not a fighter, and we could elect one if we wanted to.

      That’s my take on what happened to activism in NH. It had very little to do with money, except that shrinking resources made everyone in the system afraid, and they protected their own little programs instead of fighting for real system change, as we did in my day.

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