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Commentary by Lucy Gwin
Lucy Gwin is editor of Mouth magazine.
Scary Mau-Mau: Your new role with state bureaucrats
Ain't it funny how time slips away? Seems like only yesterday the Supreme Court announced the Olmstead decision. Already a year and a half later, how many more of us would you guess are living in freedom?
No, the correct answer to that question is not zero.
We don't have the numbers for the year 2000 yet, but it's safe to say that thousands FEWER people with disabilities are living in freedom than when the Supremes decided Olmstead.Maybe you work for an organization that gets people out. Then you probably went to great lengths to get one person out the front door of a nursing home or a loony bin or a state institution last year. It's hard work to get even one person out today. And while you were getting that one person out, the state was dumping a truckload of our people in the back door of the same hellhole. Or maybe a different hellhole.
We got together about a year ago to change all that, and ... Well, I wish I could congratulate all of us on a job well done. But you know it's not done. It hasn't even started in most states. State functionaries have not yet launched their needs surveys let alone let anyone out to run around loose.
I'm here to say that you do, you truly do, have the power in your hands today to change the way the state conducts the disability business.
The disability rights community has been working to change long term care policy since 1968 when Ed Roberts was forced to live in a hospital if he wanted to go to school at U. Berkeley. Now, 33 years later, we have law that says he can live where he damn well pleases.
You have the power to change your state because the highest court in the land gave you the power when it handed down Olmstead as law. Your state is in flagrant violation of that law, no better than a common criminal! What you have is the power to bring your state to justice.
Ask any cop. There ain't no way to enforce the law politely. Yes, I know how polite folks are when they were raised the way we were: Don't call attention to yourself... She's just trying to be nice... Don't make a scene. We were all so well trained... Come on, don't deny it: you want to get Olmstead enforced nicely. Trouble is, like my friend the Right Reverend Rollo Sykes says, "Ain't no percentage in being NICE when they got their thumb two joints up in your eye socket."
And honey, they do. Long term care is like disability: it can happen to you -- if it hasn't already. All you got to do is get hurt or worn out some way. Easy as that. Just like you can't get folks to believe that about disability, I can't seem to get the advocates in our movement to believe that about long term care.
So I wrote this speech, my idea of a way to talk to bureaucrats. [LINK] Zoom ahead if you wanna. [End LINK]
I'm going to stay here a minute and tell folks why this speech qualifies as mau-mauing and how I learned to do it.
Back in the day, I worked in the civil rights movement. Starting in 1958, and I never got paid for it either -- the movement didn't give out no paychecks. People just did it. (If you ask me, that's one of the reasons we don't have thousands marching in the streets. Too many of us would head for home at 4:30.)
I wish I could say I earned my stripes at lunch counter sit-ins and freedom rides, but I was just a little bitty white girl, just fifteen years old when I came on the scene. So all I did that year was fetch, carry, and run down to the store for the church ladies who quartermastered the movement.
They taught me how to make real lemonade and real string beans, how to put a little vinegar in the pan with the okra so it won't goo up. What I learned about mau-mauing (although they didn't call it that until Black Power came to the fore some years later) I overheard from the men when they warmed up to go mau-mau Mayor Daley's people, and when they'd come home all happy and re tell it for the church ladies and the kids.
To mau-mau is to display righteous but controlled anger. What you want it to do is scare the living piss out of the bureaucrat. You want to demonstrate with dead-seriousness your absolute willingness to do whatever it takes to get the job done. And the job you tackled when you joined Freedom Clearinghouse was enforcing the law, getting your state to comply with the Olmstead decision.
To mau-mau is to send a message that amounts to a threat, but not a threat of violence. What we're doing here, what any good Mau Mau does, is to enforce the law, not break it.
Even a big mau-mau doesn't have to be loud. You can deliver it in a whisper if you've got the man's attention. Be there, just those two words, I once heard one of our warriors scare a bureaucrat out of his shorts when he leaned across the table, fixed the fire in his own eyes on the bureacrat and utter just those two words. Be there. You can bet the poor man did attend whatever it was -- with diapers on, most likely.Big angry black men are scary to little white bureaucrats. Will the same tactic work for cripples? I promise you I've put the fear of God into many a bureaucrat playing the angry cripple.
A mau-mau must be properly costumed, of course. Daishikis were great in the day but not for our message. You might think about "Adapt or perish" t-shirts over jeans with holes in them. If you're wearing long sleeves, roll them up. Your mau-mau must put the fear of God's ownworking class uprising into them, so the overalls your brother wore to clean the furnace? Mean-looking clothes. You can't mau-mau anybody when you're wearing your new K-Mart suit the way good cripples do.
Who do you mau-mau? The Medicaid director in your state is fair game already, even if you've never had what-they-call preliminary meetings with her or him. The highest court in the land has ordered them to do something and they haven't done it. It's fair to think of them as your opponents. Them and people from the governor's office. They're the primary targets of the mau-mau.
Be impolite to somebody from the governor's office? You shudder to think.... But hear this: being polite to your opponent — in this case the state — looks to the state like weakness. Polite people are easy to put off. They vague out real easy once bureaucrats offer them a seat on the Olmstead subcommittee.
Yes, there are going to be times when mau-mauing is not in order. The first meeting with the head of your legislature's appropriations committees, for instance. If they're coming within 30 days of the wire for the state budget and they still haven't made a move, quick get in there and mau-mau them. You don't, as a rule, mau-mau anybody until you have good reason to be pissed off, until they have promised and failed to deliver, until they have put a roadblock in front of you, until they snuck around behind your back and did some sneaky shitass thing.
By the way, you don't want to go do a mau-mau alone. You don't want a big gang, either. Four people oughta do it just fine. One of them should do the actual talking, and the rest of you? Just keep staring at the bureaucrats. Don't flinch, don't break in, and for sure don't apologize for or contradict the main mau-mau-er. Yours is a supporting role. You're the audience for rehearsals, too, because mau-mauing must be rehearsed. You gotta know just exactly what you're going to say. Write a script. Stick with it.
You will note in the speech, below, that I'm talking to the state as if it is a monster I have to throw the fear of God into because... Because it is. And because I do. And I believe that you do too.
[Begin mau-mau]
I'd sit right down at the table and say, My name is Lucy Gwin and I'm a citizen of this here state and I'm also a full-time advocate for people with disabilities. I come here today to enforce the law the Supreme Court gave us in June, 1999 -- the Olmstead decision. I got my license and my equipment to enforce it from the Freedom Clearinghouse.From where I sit it looks like, instead of following that order from the high Court, my state has declared war on my people. Still holding how many thousands of them prisoner in your state hospitals, rehab centers, nursing homes, developmental centers... still placing my people there? It's obscene is what is is.
not to mention the thousands more you've stuck into segregated day programs, sheltered workshops, group homes...
not to mention the segregated education going on in the name of special in every school district in this state!
All this shit has got to stop. The Supreme Court said so. And here's my state ignoring that order!
(pause)
Don't interrupt me.I don't want to hear why you are breaking the law. I don't want to hear "these things take time" and how you're writing a grant and how you have to keep good relations with the providers.
I am here, all the people with me are here, to negotiate the speedy release of our people. What we require from you and the state of Indiana is your absolute and total capitulation, your immediate compliance with the law, first as it applies to residential settings.
Got me so far?
Now. We have called the law on you. We've filed some complaints with the Health and Human Services federal Office of Civil Rights. But that's just a few. We are wore out waiting for you to do what the court ordered. Pretty soon you're going to have to work out of your house because your desk is so thick with complaints.
And lawsuits too. There's a pretty good federal suit filed against you already for Olmstead. Mark my words: there will be more. All the lawyers you've got and all the lawyers you can hire on will be working in shifts to answer the suits me and my people will be bringing... against the state, the governor, against your boss and against you, individually and severally.
I am willing — everyone with me today is willing — to do whatever it takes to get you to do what the Supreme Court ordered you to do. We will get hidden cameras and news people into every single one of your "congregate settings" if that's what it takes. We will fuel the public's righteous outrage when they see what their tax dollars are paying you to do. We will tie ourselves to the flagpole down at the federal courthouse if that's what it takes. We will tie YOU to the flagpole if that's what it takes. Whatever it takes, short of breaking the law, we will do it.
(Take a breath here. When they start to talk and explain, wave that off and shut them up. You're not finished.)
I'm not finished.
Now. We would prefer to get Olmstead enforced faster than lawsuits can do it. Cuz while you and I and the governor diddle around with lawyers and lawsuits, subpoenas and discovery, a swarm of hungry reporters, public outrage... more of my people will be getting bedsores, getting beaten, getting raped, getting buggered, getting nowhere, getting dead the way they do in the hellholes you've been "placing" them in.
(pause)
Do not interrupt me.
What I want — what I'm sure you'll say you want too — is to comply with the law and get things moving.
(pause)
What can you do right now to avoid those tv documentaries on the state hospital problem and the nursing home scandal and all that federal court subpoena-answering?
(pause)
What you can do right now is give me your absolute guarantees that the budget the governor sent over to the legislature does one little thing: You'd better write this down. Redirect every dollar of the state's long term care funding to follow the person to the setting they choose for themselves, the setting they freely choose.Oh, yes it is possible. That's the law in Missouri. Missouri's not going broke on it, either. Listen to it again. Redirect every dollar of the state's long term care funding to follow the person to the setting they choose for themselves, the setting they freely choose. There's no new money necessary. The money that's already getting spent? Follows the person to the setting they choose.
Look. I've been watching this system for years. And it has occurred to me more than once that giving people what they choose is probably one heckuva lot cheaper, not to mention better, than giving people what some faraway experts think they need.
You might want to try on that thought. Olmstead implementation will save you enough money to serve everybody on the waiting list. I personally guarantee it.
(Here you pause and take a long look around the table.)
Uh-oh, I see it in your eyes. You're thinking group homes. Before you even think it, know this: group homes are not your way out.When you get to know me better, I'm sure you won't want me back at this table next year with hidden cameras and lawsuits all over again over group homes. The law says "most integrated setting for the individual."
Group homes are one choice a person might make --- would you? I wouldn't, but sure, somebody out there might -- but that can't be the only choice. In no way is the road without choices going to get the individual to the most integrated setting!
Over the next little while, there's lots more you and the governor will have to be doing, more that we'll have to do together, if we're to get the state's disability services system to actually serve the people it was designed to serve. And I will be here to make sure it gets done. Count on it.
But that budget from the governor — or an amendment to his current budget — is the first mile of the road. And we've gotta get going down that road pretty quick if we don't want another year going by with more people dying and getting bedsores and all the other little inconveniences of congregate life.
What I'm insisting that you do can be done. And it is what the Supreme Court ordered. And it is what you and the governor will personally get down and do.
Or else, in the words of the immortal Little Milton,
"Grits ain't grocery
Yates ain't poetry
And Mona Lisa was a man."....
So. That's how I would mau-mau the state.You're probably thinking, "It's not nice to talk that way."
So I want to say one more thing. Getting pressure sores as deep as coffee cups isn't nice. Seeing your roommate get raped in a developmental center isn't nice. Being electroshocked because you won't behave isn't nice.
Your state has long since abandoned the nice standard in dealings with its disabled citizens.
You go in there being nice and you're playing the fool.
One more more thing: This is going to be fun. This is going to show you how much power you have.
Now. Time for you to go forth and mau-mau. Enjoy.
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