David Hilton Changed the World
His Anger Killed Him
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.
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
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.