Here's the letter announcing
Freedom Clearinghouse.
November, 1999
Dear advocates and friends,
Ten years ago, a drunk driver hit my car head-on.
Three weeks later, I woke up in a nursing home. I was
forty-six years old. The first words out of my mouth: "I
want to go home." Their answer: "You can't."
I would be there to this day if a big, mean-looking
friend of mine hadn't pushed past the security guards and
brought me out to freedom. Until June 22 of this year,
nothing in state or federal policy had changed enough to
free me from that place. June 22 is when the U.S. Supreme
Court ruled in favor of freedom. But that ruling only
begins a process which may take ten more years.
Most folks think they'll never wind up in a nursing
home or institution. Those of us who have been there know
better. Currently 1.9 million Americans are imprisoned --
in long term "care" facilities -- for the crime of having
a disability. I hear their voices. It's as if they stand
beside my bed every night asking, "Lucy, what have you
done today to get us out of here?" Tonight I can tell
them: your freedom is on its way.
Today marks the beginning of a major effort to see
that the Supreme Court's June ruling in Olmstead v. L.C.
& E.W. is enforced in every state and territory of
the United States of America. I'm here to ask you to join
that effort, the Freedom Clearinghouse. I'm asking you to
use your license to change the system, right now.
[Note: Each letter had a license in it, imprinted
with the person's name.]
The goal of Freedom
Clearinghouse is to reduce America's institutional
census by 250,000 people by the end of the year 2002.
We hope to see one quarter of a million disabled
Americans come out to live in freedom. During that
time, we hope to keep half a million more people from
being forced into facilities in the first place.
Important note from Mike Oxford, who helped free the
people of Kansas from nursing homes/institutions: "Relax.
It's not like a tidal wave or nothin'. Freedom comes
along one person at a time." Today Kansas is one of the
very few states where people with disabilities cannot be
forced into long-term "care" institutions. We want the
whole country to follow Kansas's lead. And, yes, it can
be done. Because now, at long last, the law is on our
side.
But freedom won't come easy. We can't do it without
you. Please use the yellow sheet enclosed here to enlist
as a front-line advocate in this battle for freedom. Or
to support others in this work with a tax-deductible
gift. Even better, do both.
We estimate that the first year's work at our end will
require $72,000 in expenditures. [Note to C.G.: that
estimate was way under!] (We guarantee: not a dime of
the budget is for airplane tickets or laptop computers.)
That amounts to less than 45¢ per person who will
gain their freedom!
I keep referring to "we." "We" is Mary Johnson, editor
of The Ragged Edge, and me, Lucy Gwin of Mouth Magazine
-- with moral support from the likes of Tia Nelis, Steve
Taylor, Vicki Wieselthier, David Oaks, Paul Spooner, Emas
Bennett, and Luis Roman.
Why don't we just get a grant? Good question. The
answer:
A year ago, Mary Johnson and I approached NIDRR (the
National Institute on Disability Rehabilitation and
Research, pronounced NY-der) with a proposal to do a
project like this. A few months later, NIDRR said no.
(We've enclosed a short list of the stuff NIDRR did fund.
Take a look at the Who-Got-The-Green sheet, right.)
Then, after the Olmstead decision came down, Mary and
I said to ourselves, hey! If NIDRR won't do it, we bet
our readers will! The groups listed on page one say the
same about their members: Now that the moment has come,
they will want to make history.
Is it true? That depends on how you answer this
letter. Will you join us or will you turn your back? In a
few days, we'll know.
A quick legal briefing: What the Supreme Court ruled
in Olmstead has the force of law today. Justice Ruth
Bader Ginsburg, writing for a 6-3 majority in June,
affirmed that the ADA does indeed require states to
support people with disabilities to live in the community
rather than in institutions -- if treating professionals
agree, and if that is the individual's choice.
(Important note: we would no more force people out of
institutions than we would force them in.)
Don't think for a moment that states will change the
way they do business out of the goodness of their hearts.
Bureaucracies exist to defend the status quo. For those
of us who need some assistance in our everyday lives, the
status quo is a lockup. The Supreme Court has now said
that we, like other Americans, must be allowed to choose
where we live.
But no one is going to hand us our freedom on a silver
platter. We must earn it. Here is the plan for doing
that:
Freedom Clearinghouse will:
(1) First, gather our forces. Identify and
enlist cross-disability advocates in every state and
territory.
(2) Supply those advocates with materials they
can use to negotiate with states to
(a) free people who live in
institutions today,
(b) provide services to people who would
otherwise be institutionalized, and
(c) set up community services so they
actually serve people within the community. (That's
the most radical idea of all!)
(3) Hook up the advocates we find with
like-minded others via phone, mail, and a
website.
(4) Broaden our movement by reaching out to
others who would want to join us in our work -- but
don't yet know that there is a disability rights
movement. That's millions of Americans right
there!
Let us not underestimate the enemies of freedom.
Nursing homes, "rehabilitation" corporations, unions
representing workers at state institutions, sellout
non-profits that put people away for their own good,
parents who want their dis-labeled children kept out of
sight -- all have greased the wheels of local and
national politics. We have a real battle before us.
That's a battle we know something about. In 1995,
Mouth magazine published You Choose, a booklet with
side-by-side comparisons of taxpayer cost and living
conditions between life in freedom and life in
institutions. We proved that life in freedom, with the
supports people want, costs about one third as much as
life in captivity. We estimate that tens of thousands of
Americans gained their freedom when advocates pressed
their states with these simple cost comparisons.
Example: Tom Ridge, the Governor of Pennsylvania, took
to carrying a copy everywhere so that when people
approached him to lobby for freedom, he could wave his
You Choose and say, "I've read it! I've read it!
See???"
We'll have all that data and much more in the Freedom
Clearinghouse materials. During our August meeting in
Louisville, Mary and I made a yards-long list of
practical tools -- real power tools -- that people can
use to move states out of the dark ages. Both of us knew
people who had worked with the states. What did they need
to get the job done? We called them and asked.
Each of the answers was different -- from strategies
for changing the state's Nurse Practice Act to materials
to prevent the state from thinking group homes are the
answer to everything. We asked others how they got around
this thing, and how they fixed that one. Everybody had
some little piece of the puzzle. Right this minute, Mary
is drowning in paper, swamped with work, assembling the
tested and proven tools and materials that front-line
advocates must have if they're going to win this
battle.
Mary has her work cut out for her. The way we divvied
things up, I do too. My job is to gather support for the
project from groups and individuals -- and raise money to
get the work done.
That's where the yellow sheet and the yellow envelope
come in.
Beginning in January, we will ship Freedom
Clearinghouse materials to everyone who signs on for the
vital work ahead. Already we have the stuff it takes to
jumpstart any advocate with a simple get-up-and-running
road map. We'll mail a copy of that road map to everyone
who sends us their blue sheet now.
Soon you'll have a website to consult, a Freedom
Clearinghouse online, for news, for updates on facts and
statistics you can use, for ideas on where to go for
funding and resources, and with a chat room where you can
compare notes with other advocates. You'll even be able
to download the how-to power tools that Mary is
developing right now.
The brave and brilliant Deb Fedor will troubleshoot,
via phone, with folks on the front lines. Deb knows what
extraordinary things ordinary people can accomplish.
She's Brooklyn's master of people power. If advocates run
into roadblocks? We'll work out a way to get around -- or
through -- them.
All of us, together, can indeed free one quarter of a
million people. But we can't do it without you. Please.
Fill out the enclosed blue sheet right now. Return it in
the blue envelope today. Write as big a check as you can
-- every 45¢ brings one person closer to the freedom
that is every American's birthright.
Or do it for yourself: so that you will never be
imprisoned for the crime of having a disability.
Now comes the moment when you must make your own
choice. Will you do what NIDRR won't? Will you join us in
the battle for freedom? That blue sign-up sheet has your
name on it.
I don't believe you will throw it away. Please join us
now.
In the name of Liberty,
Lucy Gwin
PS: We will be thrilled when groups sign on to help in
this work. But we want you lone wolves too. You'll soon
be in touch with others in your state who will build
liberty for all.
Everyone, rich or poor, young or old, with any
disability or no disability at all, is welcome at the
Freedom Clearinghouse. You hear that? It's all of us,
together! Please let us know you will join us, that you
will use your license to change the system. Please let us
hear from you now.