A Chance to be Made Whole

A Chance to be Made Whole: People First Members Being Friends
to Tear Down Institution Walls
by People First of Tennessee
1997

Fighting for Freedom is Hard Work

People First of Tennessee has worked hard to make some big changes for people who now have the live in institutions. Because they fought in court for institutionalized people, the state has agreed that people who now have to live in four institutions will get the services they need to move into their communities.

One way that People First members helped to win this victory was by acting as what lawyers call "next friends" for People First members who live in institutions. A "next friend" is somebody who gets a U.S. federal judge's attention for people who need the judge to protect their rights but cannot speak for themselves and have no family willing or able to speak up for them.

On December 14, 1996, People First members and advisors met at the state People First office to talk about what they had learned about reaching out and being friends to people who still live in institutions. They did this for three reasons:

because they want to continue to support people as they move out of institutions;
so that other members of Tennessee People First who want to be friends for people in institutions can learn from them;
so that members of self-advocacy organizations in other states who are working to close institutions can learn from them.

The ideas and experiences in this article come from a booklet of people's own words. John O'Brien listened to the meeting and kept notes on big charts. He checked his notes by reading them back to make sure that he got what people said. He organized people's ideas into the booklet. Then People First members and advisors checked the booklet, made corrections, and added more ideas and stories.

A Good Friday Visit

It was Good Friday at the institution. Afternoon cartoons were blaring from the television in the "living room" of one of the cottages where I sat observing Deborah, one of our People First members. Four staff members watched me sullenly as they sat in chairs along the wall. I had positioned myself across the room from Deborah after re-entering the building following a dispute over whether I could visit her.

For five years, Deborah's sister (her legal guardian) had opposed any contact between her and People First. This time, armed with a federal court decision, I had been determined to visit. When I first arrived, Deborah and I moved into the dining room to talk. I wrote questions on a tablet because she has trouble hearing. I asked her how she like her job at the workshop in town. She started telling me about problems with her paycheck and described the types of contract work she did.

Less than five minutes into this quiet exchange we were interrupted by three staff members in quick succession, each challenging my visit. With each challenge, I explained the court's decision. After the third challenge I was invited to see the supervisor who was anxiously packing up to go home, it being a state holiday and all. The supervisor in turn had me talk on the phone to the administrator on duty, who realizing the legitimacy of my request, passed approval back down the chain of command.

However, by the time we had resolved the dispute, Deborah had also gotten the "message" and had withdrawn back into herself. So, on Good Friday I watched as she sat in her wheelchair talking to a small Teddy bear she clutched in her hand. "Don't worry, Cassandra," Deborah said to the bear, "I'll make sure you got some Easter eggs. We'll look for some in the parking lot. There might be some in the parking lot. Don't worry..."

I wrote Deborah another note as I prepared to leave. I thanked her for taking time to talk to me and wished her a Happy Easter. She took the note and read it. She shook her head slowly and then set it gently on the table beside her. Not knowing anything else I could do, I picked up my backpack and headed out to meet my ride.

I walked across the grounds in the brisk spring air filled with anger and frustration. Three years after a major court ruling against the institution, little had changed. I visited six people that day, all of whom were still living out their lives on an island of isolation and hopelessness.

Clover Bottom Freedom Train Song

Get on board the freedom train is what I want to do
tell this institution that my days here are through,
find a home and get a job in the community--
don't you think there's room enough for you and me?

Many years have come and gone since I've been in this place
waiting for an opening to join the human race,
three square meals are not enough to feed my lonely soul--
won't you give me one more chance to be made whole?

The days go by, each one's the same, no end to it in sight,
I try to keep my dignity and go on with the fight
to gain my liberation from this cold and heartless state--
can't you tell it's getting hard for me to wait?

I hear about the outside world and its opportunities,
I hear the whistle blowing for others just like me--
it's my turn now to get on board--I'm never looking back,
that freedom train is rolling down the track.

Get on board that Clover Bottom Freedom Train!
Get on board that Clover Bottom Freedom Train!
--Ruthie-Marie Beckwith, December 22, 1995

People Who Live in Institutions Need Friends

People who live in institutions and people who are moving out of institutions need someone who will:

listen carefully to find out: their hopes and what they want to get out of life; their concerns, worries, and troubles; what help they know they need
talk with them about: their rights and how People First can help them get respect for their rights; what the judge says has to happen when they move out of the institution; the ways other people with disabilities are living with dignity in their communities
help out with problem solving by: sharing experiences and information and asking questions; encouraging them to keep working on important things, one day at a time
support them when their plans for moving out of the institution are made so that the plans make sense for them
advocate by: keeping an eye out to be sure that people stay safe; speaking up when things are not right and their voice isn't heard; getting help from People First when the institution doesn't do what's right; helping them to tell the judge when the institution won't follow the judge's order.

In one word, people need friends who will be there for them so they know that they are: not alone; not crazy, to hope for better things; not bad, to speak up for their rights and work for what they want from life. Friends who will show them there are people in the community who: will be on their side; have been in their shoes and are making their lives better; will be friends after they move out; want to help solve real problems; need them to join in to make changes so that everybody's rights are respected.

Institutions Put Walls Between Friends

Institutions try to keep us away from each other by keeping the doors closed between us. The institution has:

kept us from coming in to visit a friend;
told us we have to leave and have no right to be there;
made our friends disappear by moving them and telling us that they will not say where our friend has moved because of confidentiality;
kept a person who wants to come from attending People First meetings because she has been moved from a building where staff take people out to a building where staff don't take people out. (The people in the second building are older. In that institution, people lose the right to go out just because they have more birthdays.)
refused to let people out to come to People First meetings;
kept people from getting mail about People First;
kept people from making or getting phone calls between friends.

Sometimes the institution even separates people inside the institution who are friends from each other. Many people have lost contact with their families because the institution makes it hard for them to stay in touch. When we do get to be with people, the institution still tries to be in control. They try to tell us when we can see our friends and for how long (even during free time). They try to tell us where we can see our friends. They say they have to be present because if they are not we will confuse, or upset, or manipulate our friends.

Staff who bring people to People First meetings sometimes try to keep the wall around the people right at the meeting by:

making all the people they brought sit together with them;
telling people not to talk to other members;
listening in when people try to have a private conversation;
interrupting people when they talk.

One of the best ways the institution has of trying to control people is to just ignore them. Some of us have made call after call to set ways for our friends to join People First meetings. The institution just doesn't call back. If they do call back, they say they can't do anything now but they'll call back later and then they don't call back later. If they do agree to do something, they just don't do it and then don't call back when you want to ask why they didn't do what they said they would.

Another way the institution controls people is to lie about what happens to people. A People First member got bruises from the way staff handled her; other members saw the bruises and heard how it happened. But the staff said it didn't happen. All the way up the line supervisors said it didn't happen. We have even heard staff people lie about things we know happened when they are under oath to tell the truth. When the institution won't even admit that there is a problem, it is very hard to work on a solution.

Mostly, the people who keep the walls up stay pretty cool and act like they are just doing their job. But sometimes the wallkeepers get really angry at us right out loud and say things like:

"How dare you interfere! This is none of your business!"
"You don't know what I have been through and how much hurt you are causing me!"
"You are ignorant! You just don't know anything."
"Get out of here!"

Often it is people's family members who say things like this to us. We think this is because the institution wants to turn people who care about the people inside the walls against each other. We don't want to hurt anybody, we just want to be sure that people get what they deserve.

What We Can Do to Get Through the Walls

When the institution tries to separate us from our friends we can:

be firm, but not hateful back at the staff people in the way;
tell the staff people in the way that it is right for people to have friends and belong to People First if they want to;
ask the staff people in the way to step aside so we can see and join with our friends;
make it clear that we have no intention to upset or confuse people, we just want to see our friends, and get to know them, do things with them, and make sure their rights are respected.

Sometimes a staff person just will not let us see our friends and will not be moved. It's a good idea to let the People First office know about this. It may be something that can be settled with the institution. It may even be something that will need to be settled by the judge.

The institution walls are so strong because:

lots of people thing that people with disabilities can't do anything and will get hurt or in trouble if the institution does not control them;
lots of people don't believe that people with disabilities have the same rights as anybody else;
people in charge of the system don't want to take responsibility for making the kinds of big changes that it will take to make the kind of community services that respect people's rights;
some staff people are scared because their wages and their careers are all tied up with the institution;
some family members (and some staff people) just don't believe that there is any place but the institution that people can get the help they need;
many of the services in the communities have been weak and have sent people back to the institution instead of figuring out how to help them better.

It is good to know what makes the institution strong. When we know what makes the institution walls strong, we can do a better job of tearing them down. Everybody needs friends who will work together to tear down the walls.

For a complete copy of the booklet, A Chance to be Made Whole: People First Members Being Friends to Tear Down Institution Walls, write to: Rachael Zubal, Center on Human Policy, Syracuse University, 805 South Crouse Avenue, Syracuse, NY 13244-2280.

The preparation of this article was supported in part by the National Resource Center on Community Integration, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037. No endorsement by the U.S. Department of Education should be inferred.