by Lucy Gwin
Gwin is editor of
Mau-Mau: Your new role with state bureaucrats
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?
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.
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
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
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
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
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
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.
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
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!
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
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
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.
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.
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
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
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
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
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
"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.
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