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When I turned 27, I learned how to fly a small cloth-covered airplane.
One time, Bobby, my instructor, and I decided to fly from Boulder,
Colorado to San Diego. We debated which way to fly over the Rocky
Mountains. The Northern Mountains are higher and more dangerous.
The mountains to the South are lower and easier, but they take longer.
We decided to try the quicker, steeper route. The weather was great.
The sun was shining, but suddenly fog moved in. We couldn’t
tell which way was up or down, or if our wings were level or at
an angle in the air without looking at our simple instruments. I
was terrified that we might run into a mountain.
I will finish this story later, but right now, I want to interject
that my life became fogged in by my mental illness. I didn’t
have power on my own to pull out. I needed help. I didn’t
know what to do.
After several hospitalizations - - - one that lasted for three months
back in the early 90’s - - - I helped design a Clubhouse in
Littleton, Colorado, named S.T.A.R. Reach Clubhouse. At that time,
all I could do was sit around and smoke three packs of cigarettes
a day. I frequently spilled pop all over my clothes, and all my
friends and I talked about was the mental health system and the
grandeur of the past. I only took a shower about once a week.
One of the staff found out that I had a degree in English and journalism,
Magna Cum Laude. He talked me into sitting with him to make decisions
about the newsletter. I was too injured to type much, then from
a brutal beating. Everyone loved Mark. He was so kind, and he encouraged
me. One day, I saw a flier for an advocacy meeting called CART.
I told Mark it sounded interesting, but I had heard they were a
radical group. He talked me into trying it. He suggested that I
try just one meeting to see in I liked it. My career as an advocate
was born.
I met another consumer who guided me into the limelight. I met people
with the National Alliance for the Mentally Ill (NAMI) in Colorado
who were on the verge of passing legislation to have a state parity
bill. Chris, my consumer friend, and I sat in the balcony at the
Capitol. He told me the names of the sponsors, etc., and I wrote
an article about the debate with dialogue from the floor of the
legislature. We published it in our Clubhouse newsletter. When I
met the Sponsor, Dottie Wham, I told her about my article. She said, “And
why don’t I have copy?” I told her I would send her
one, and she gave me her home address.
Chris got me on the State NAMI Board of Directors where I later
served with Senator Moe Keller from the legislature’s joint
budget committee. Chris took me to Planning Council. Federal law
mandates that each state must have a forum where people with concerns
about mental health care can have input. Our forum is called Planning
Council and it has about six committees. I bought a black linen
suit from our Clubhouse thrift store for meetings.
Often, I was the only consumer there. When I spoke, I was told that
I was off the subject. I had no idea what people were talking about
a lot of the time, but I wanted to express the consumer viewpoint.
People complained that we didn’t have many consumers there,
but nobody knew what to do about it. Chris showed me how to get
scholarships to go to NAMI conferences all over the U.S.
So at this point, I will go off the subject, and yet you’ll
see how it makes sense. Remember my story about being fogged in
the Rockies in a little airplane? Another time, Bobby and I flew
the super cub to Victoria, Canada. On the way, we flew over Mt.
Rainier. When I gazed down into the deep cracks in the huge glaciers,
I unconsciously started raising my altitude. I kept going higher
and higher. My instructor kept telling me to watch my altitude.
If I went too high, we would stall out of the sky and fall. I knew
that I didn’t want to fall into a deep crevasse. --And so
we all must learn not to fall into deep depression or go too high
into mania acting on impulse and even going into delusions.
Back to advocacy, I was chosen to go to Clubhouse training in Manhattan.
I became co-secretary and co-president for the Colorado Clubhouse
Coalition. I found money for myself and members to go to Clubhouse
conferences.
NAMI was so supportive and patient with me. I testified before state
legislative committees for them. The sponsors hugged me in front
of their committees. The first time I testified, I really made a
mess of my presentation. My viewpoint angered consumers all over
the state. NAMI gave me a giraffe award for sticking my neck out.
Life was good. Chris took me dancing, fishing, camping, to parties
and lots of fun activities with his church group. –But I still
didn’t quite understand Planning Council. I joined the new
Medicaid Capitation Committee. When I spoke, a particular attorney
kept telling me I was off the subject. I took him on at a CART meeting
and told him he should listen to the consumer perspective. We argued,
and I got a reputation for being persistent. I almost went to law
school and the goal of my major was to be forceful and lucid. I
started insisting more and more that what I had to say sounded different
because of my consumer perspective and that what I had to say was
important. Someone suggested a “soap box” on the agenda
to allow ten minutes for anyone to talk about any topic relating
to mental health.
Eventually, another consumer came on board. I found that if two
consumers expressed an opinion instead on just one, they would listen.
NAMI people remained so supportive.
Years went by, and we watched each other’s hair turn grey.
Then, Mental Health of America started a statewide consumer board
called WE CAN. Amy Smith became the executive director. Jean was
the executive director of MHA. There had been a law suit and Planning
Council had lost the privilege of writing the huge Medicaid contract
to Health Care Policy and Finance. Council still writes the contracts
for large federal grants.
For years, I had heard Planning Council members, including myself,
complain that we needed more consumers at the meetings. Sometimes,
a consumer would come and look perplexed and overwhelmed and never
come back. Amy and I changed all of that. She became the co-chair
of the whole Planning Council.
For years, when Planning Council members complained that we needed
more members, I would raise my hand and say, “You need to
pay consumers, and then they’ll show up.” Or, “You
directors come here wearing $300 dresses, and consumers come with
holes in their jeans. I buy my clothes at Good Will.” Once,
I said, “There are many consumers who can advocate much more
brilliantly than me, but they don’t have a car, or a phone,
or sometimes, a place to live. We need to pay people for their time.”
I was told over and over that Planning Council couldn’t pay
consumers to come – it was unethical, illegal or against the
by-laws –a conflict of interest. “No way can that happen.”
But I never took no for an answer. When Amy came aboard, suddenly
one day, the issue came up in the strategic planning committee.
Some extra money was given to Colorado after the main grant money
was received. Amy claimed that she and Jean didn’t say anything,
and the strategic planning committee, out of the blue, decided to
set aside $55,000 to fund stipends for consumers who would come
to Planning Council and its committees. I don’t believe that
Amy and Jean didn’t encourage this. The same argument came
up, “You can’t do this. It’s illegal” etc.
So, Amy called the national office of U.S. Planning Councils, and
they had never heard of such a thing. They checked all the by-laws
and regulations and found nothing prohibiting this action. In fact,
they thought it was a good idea. When Amy went to the National Planning
Council conference, we were acknowledged for being on the cutting
edge for that action. Then, Amy started a meeting the night before
Planning Council to talk about what was going to happen at the meeting.
I didn’t want people to feel perplexed and not come back.
We were being paid about $17.50 and hour, but when I tried to talk
about what we wanted at the meeting, we were whisked over. When
I complained, they said we could talk at soap box. Next meeting,
I told Amy and the others that we needed to be a committee of Planning
Council. One of our members said we could be called PAE committee
which stood for Protection, Advocacy and Empowerment. Some more
strings were pulled and my vision and persistence became a reality.
One of the chairs of PAE committee was nominate and elected vice
chair of Planning Council. Amy calls me the quarterback, because
I deliver the reports to council. Now, the consumer voice is strong
at Planning Council in Colorado. We’re putting together a
book of recovery stories, and Amy has a place to submit them for
international publication.
So, what happened to the airplane fogged in the steep Northern Rocky
Mountains? Am I off the subject? Not really - - it’s just
a different perspective of the same subject. When I was fogged in,
Bobbie told me we knew there was no mountain where we were before.
He told me to raise the nose to a safe angle, and fly a tight spiral
upward. He told me to put on a lot of power and hope it would be
enough to get us above the fog into bright sunshine. And we did
get above the terrifying fog and emerge into sunlight. We then took
time to head South and fly over the safer Southern mountains. And
I would say to you what you already know. Mental Illness can close
in on us like the fog in the mountains. It can be life-threatening.
However, the support of Clubhouse teaches us to set our goals and
move upward. Through friendship and mentoring, we get help to climb
out of difficulty and get back into the community and life itself.
Was I off the subject? – not really. It’s just a different
perspective.
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