go alone. Even if you only have one "seat" at the table,
which is usually the case, get someone to go with you. They may have
to sit in the public seating area -- if there is one.
no public seating area? Demand one. This is public policy
reform in action. Is the public not invited to attend? Better yet, demand
more seats at the table for your friends.
clear about who you represent. Tell them why you're at the
table, and what you know to be wrong with the system. Don't be surprised
that they have no clue. This will change, but only if you stay at the
4. It may be
expensive for you to travel to meetings. If
you need financial support to get there, ask the bureaucrats
for help. If they say no, ask around at Vocational Rehabilitation, your
local CIL, or the Statewide Independent Living Council. Ask the Developmental
Disabilities Planning Council and the state's Protection & Advocacy
office. Ask! If you're hooked into a local advocacy group, see if they'll
support your travel expenses.
their language but don't speak it. Prepare yourself to be
surrounded by birds who squawk unintelligibly. They talk about minimum
standards, quality performance, licensure, spousal impoverishment, rate-setting,
shared risk, negotiated care plans, phew! (Dignity and independence
are empty rhetoric at these meetings. Even when you hear those sacred
words spoken, don't expect fundsucker definitions and ours to agree.)
them explain themselves. Literally say, "What does that term
mean?" You aren't the only one at the table who can't swallow the jargon.
Even in this high-flown company, you can feel comfortable using your
own language. Yes, they will find talk of people being locked up and
segregated "inappropriate," or offensive. You may even get a chance
to explain your terms.
6. You will get angry, no question about it.Show
your power by staying cool as much as possible. No, it's
out the fallacies and the myths that set up the old system.
They threaten any genuine reform. Demonstrate with your own experiences.
8. Act like you own the place.
Consider yourself a Quality Controller. Get comfortable. Let them know
your views are more important than those of the guy sitting next to
you who profits from locking up our brothers and sisters.
Take a big space at the table.
Let them run and get your coffee. You are the most important person
present because you've been a captive of the system. (You haven't? Then
bring somebody who has.) Having been on the receiving end of the "services"
they're talking about, you are the expert.
facts to the table. Use them when you make what they'll call
wild allegations about the horrors of long-term "care." Get your hands
on deficiency reports on institutions. These are public documents and
will surely get people's attention.
When one of these suckers talks about something you don't know about,
get informed and bring your information to the
table next time.
10. Never give up. Never give in.
You're the only person present who can speak from the expert end-user
perspective. Insist on being heard. Then bring more people to the table
who can speak truth to power. You are not alone.