Imagine this -- Somebody from NAMI attends one of those campaign events and gets to the microphone. Intending to ask about the candidate's views on funding for community mental health, this poor parent begins with a statement:
People with severe mental illness die on average twenty-five years before everybody else. They have the expected lifespan of Somalia.
Nowadays the crowd will cheer. But that particular youtube wouldn't go viral.
I am jaded about this Mental Illness Awareness thing. It will not be subjected to any Best Practices evaluation. NAMI and the pharmaceutical industry have been making us more aware of mental illness for decades now. The numbers on prejudice have not budged. They have not budged.
That negativity -- does it mean I am currently displaying symptoms or that I have done my research? Both, actually.
I'll cop to the irony here. I myself was a speaker at one of those Mental Illness Awareness Week events once, held on a Sunday night in a not-much-traveled portion of a university campus.
It was very moving, the candles and all that. And it did raise awareness, in the sense that it made those of us who were there, people with mental illness and those who love us aware that we are not alone. But did it increase funding for research and treatment? Did it reduce prejudice? I don't think so.
Let me answer that another way. Did it increase funding for research and treatment? Did it reduce
prejudice?
Nope.
So symptoms, research, irony and all, my contribution to Mental Illness Awareness Week is a repost of what I think we ought to be doing this week. And next. And next.
From Friday, March 11, 2011:
Ignore/Laugh/Fight/ -- Mental Health Advocacy That Wins
If they don't want to employ you, if they are afraid of you, if there are four times as many of you in jail as in the hospital, then it's not just stigma. It is prejudice and it is oppression.
The
twentieth century offered a whole degree program in prejudice and
oppression. Others have made progress against
what beat them down. Though we are now stalled
and falling behind, we can move forward when we adopt their methods.
The
Map to Liberation
Mahatma Gandhi was not the first freedom fighter. But he is the great
theoretician. He gave us the map.
First they ignore you.
Then they
laugh at you.
Then they fight you.
Then you win.
Four simple steps. The good news -- we have already taken the
first. Got that one down pat.
Liberation 101:
We are in
charge of the map. The oppressor doesn't decide that oppression will
end. It endures until the oppressed decide that it will end.
What we have to do is provoke the next step.
Then they laugh at you.
Well, that's where we are stuck, because
we are unwilling to be laughed at. Last month's NAMI meeting was about
Iowa's upcoming budget cuts. Somebody said, When we complain, they
say we are crazy. I think she is a therapist. She has that
therapist look, if you know what I mean.
Therapists say the funniest things. When we complain about
how we are treated, they say we are crazy.
But we are crazy! We start off ahead of all the
other liberation movements that had to get crazy to take it to
Gandhi's next step.
Think Martin
Luther King. Think Nelson Mandela. Freedom? People called them
communists. Either that or just plain nuts.
Like these other
movements, we have to find a spiritual taproot deep enough that we can
endure being laughed at. Just like the tree, standing by the
water...
The spiritual work
will be impossible if we expect our care providers to lead. They get
twitchy if we talk spirituality. I will address that work another
time. Right now I will sketch out how we break beyond First they
ignore you, and move to Then they laugh at you.
What that means more precisely is, we have to do things to
make people think we are nuts. Like, DEMAND that we receive
funding for research and treatment, DEMAND
that we have the same access to health care as anybody else, DEMAND
that we receive our health care in health care facilities, not in
jails.
It's all about budget cuts
right now. Corporate tax cuts -- that's a given. Corporations spent
good money for our current crop of legislators, and they expect a return
on investment.
So who will pay
for these tax cuts, the people with mental retardation or the people
with mental illness? The Iowa State legislature
has a committee that has asked us to decide. Well, isn't that
special.
We have to DEMAND
that they change the rules of this game. We have to REFUSE to
play Survivor. We have to refuse LOUDLY.
How? African Americans sat down. That is when they moved off
Step One, when they REFUSED to be ignored any more.
So how about we lie down?
Lie In/Die In
Picture
this. The next Loonie Lobby Day at the state legislature, we don't get
all showered and neatly normaled up and go have sincere conversations
with our legislators who are really sympathetic (their brother has
depression, so they know what we are up against, but their hands are
tied by that pesky deficit...)
Instead, we
stand in the rotunda and read off the names of their constituents who
have committed suicide. Each time a name is read, somebody falls down.
They have to step over our bodies to get out of the building.
Mental Health "Parity"
The Mental
Health Parity and Addiction Equity Act would be better called the Swiss Cheese Mental Health Act.
1) Only large employers are affected.
2) If they can demonstrate it causes them financial hardship,
they can get an exemption.
3) Parity is a laugh anyhow, if reimbursement rates are so low you
can't find a provider who accepts your insurance.
4) The provisions of even this piss poor legislation that
address reimbursement rates are now the top of the list on Congress's
chopping block.
So off we head to
Washington. There are 13,000,000
million of us with serious mental illnesses in the US, including
5.7 million with bipolar, 2.4 million with schizophrenia and 7.7 million
with PTSD. The numbers add up to more than 13,000,000, because some of
us get to double dip. Piece of cake to pull together 34,000 to do a
die-in around the steps of Congress, representing one year's worth of
the deaths by suicide in the US. We will drape American flags over the
bodies of the vets.
Yes, we are
dying out here. Let them step over us.
How nuts are we to think we can turn
around this systemic discrimination? In this political climate?
Progress Report
Remember,
When we complain about how we are treated,
they say we are crazy? By now some of my
readers seriously want me to reconsider Seroquel. Others -- if you are still reading, your doc
wants you to up your dose. This means we are making progress.
At some point, laughter becomes a cover for scared.
Then it's time for the next step.
Then they fight you.
Remember, this is our map. We are the ones who push it
forward. Nobody else will. And if I am scaring you, look at it this
way. If we aren't scared already, we'd have to be crazy.
Until we change our advocacy, we will continue to lose
psychiatrists. We currently have less
than half the psychiatrists we need to provide a even a shoddy
level of token med checks. In Iowa, we have one fourth. While demand
is going up (think Iraq, think Afghanistan), supply is going down, as
retiring psychiatrists are not replaced by new doctors. Why go that far
in debt to get through med school and then choose a specialty with the
lowest pay scale on the block?
Until
we change our advocacy, we will continue to
lose community
mental health centers. Remember community mental health centers?
The places we were supposed to go when they kicked us out of the
hospital? They are disappearing already. Here are the Kansas
numbers. You can find the same story for any state you google.
Until we change our advocacy, we
will lose what parity was promised. Again, all employers have to do to
avoid it is demonstrate that it
costs them money to provide it.
Until we change our advocacy, we
will lose even the programs that jails now provide. Why should
criminals be coddled?
Desperate Times Call
For Futile Gestures
What were we thinking? That public demonstrations would make a
difference to cold hard facts? Were we nuts? (By the way, what have
we been thinking, that talking would make a difference?)
After the strategies designed for
Then they laugh at you prove futile, we up the ante. In place
of our bodies, we substitute urns full of ashes and dump them on the
floor of the assembly halls.
In
1987 AIDS activists entered the New York Stock Exchange. Seven people
unobtrusively chained themselves and a banner to the rail overlooking
the trading floor. At the opening bell they unfurled their banner and
blew fog horns. They drowned
out the opening bell, and prevented traders from trading, while
they brought national attention to their demand that pharmaceutical
companies stop profiteering at the cost of their lives.
Wall Street is our audience, too -- all the businesses that
insure some of their employees but not us, all the health care companies
that pay reasonable reimbursement to some doctors but not ours. How
about we bring ambulance sirens?
A Day Without Mental Health Care
Next we head to Main Street.
The 2004 film A
Day Without A Mexican
imagined what would happen if one day everybody in the US from
Mexico, Guatemala, Honduras, Nicaragua, et al disappeared. Economic
havoc, that's what. A few years later, the movie inspired a political
demonstration. Workers stayed home for a day. In some places,
restaurants simply closed for the day, unable to serve their customers.
So last week the Wall
Street Journal reported a survey by Workplace
Options. The survey discovered that 41% of workers polled had
taken 4-9 days off work in the previous year to care for their own,
their friends', their coworkers' or family members' mental health
issue. Half work in offices with no benefits, support or services to
deal with mental health issues.
They
think they can't afford to provide services? They haven't a clue how
much it already costs them not to.
There you have it, a National Day
Without Mental Health Care. Everybody who has a mental illness or
loves somebody who does -- stay home. I'm thinking Monday -- to make
that moon connection, and maybe even disrupt Monday Night Football?
Going To Jail
At
this point, we are littering, destroying property and generally
disturbing the peace. We are going to jail.
Everybody
on a three-month wait list for an intake interview,
Everybody
on a two-year wait list for the judicial review of an SSDI
application,
Everybody on a four-year wait list for
sheltered housing,
Everybody who had been doing okay,
but stopped taking meds when the day program closed,
Everybody
who can't afford the copay for that third tier prescription anyway,
Everybody
who doesn't have health insurance at all,
Everybody
who is homeless,
Go downtown and set a trash can on
fire.
We Need Some Coordination Here
No,
not everybody. Jail is not a good place for people with OCD, PTSD, nor
Borderline. You all, your part is to run right down to the courthouse,
legal brief in hand, to make sure the police department fulfills its
obligation to get the rest of us our meds.
Prejudice
And Oppression -- Some Observations
This post has
been about fighting
oppression, the institutional
arrangements that support an unjust system. Oppression is weighty. It
is fierce. It does not respond to reason. Power yields only to power.
The strategies and actions I have described are the power of anger that
has been organized.
Our families and our care
providers are just as scared as everybody else of our anger. So they
will not help us here. They want to address prejudice, not oppression.
Prejudice
is the irrational thoughts and feelings of individuals. Well,
prejudice also needs to be addressed. There is work enough for
everybody. Think of differential diagnoses as differential skill sets
for the differential tasks of freedom-fighting.
That's
coming next week...
banner from nami.org
image of prison bars from microsoft
photo of Mahatma Gandhi in public domain
flair from facebook
forest photo by Maylene Thyssen used under the GNU
Free Documentation license
sit in at Walgreen's in Nashville, Tennesee,
March 25, 1960, in public domain
fist graphic in public domain