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?
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.
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?
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
photo of die in casualties by Brendan Themes and used under the Creative Commons Attribution 2.0 Generic license
fist graphic in public domain