by Tia Nelis
"Should we spend money on institutions or to support people in communities?" As a self advocate, it bothers me that people are still arguing about this. I'm not quite sure what all the graphs and charts and numbers mean, or what the latest research says, or whose report to believe. So, I judge by what I know. I listen to people who live in the institutions.
How can you have much privacy when you live on a campus with 100 or more people. in a unit with 10-15 people and share a bedroom with at least one or two roommates? Struggling college students may need t live under such conditions temporarily, but not a 32 year old woman with a job. Institutions provide little privacy.
When I visit the institution the staff think I'm another "client," so I get to see the real story. I see shower rooms with doors open and curtains pulled back. I see staff opening the doors to people's bedrooms without knocking and walking inside. I see people carrying all of their valuables with them -- "hoarding behavior" I think it's called by professionals: the truth is that people are afraid their valuables will be stolen when they leave their rooms. No free access to phones. No privacy when caring for personal matters, sleeping, entertaining that special someone, or just plain wanting to be alone. Bedroom doors are never closed or locked. I have noticed locks on the nurses stations, staff lounges and bath rooms, often with a sign that says "staff only" or "knock first." Whose home is this anyway? Administrators and state officials have escorted me though people's homes and invited me into their bedrooms without people's knowledge. I think the picture is very clear. Institutional living allows people very little, if any, privacy.
Living "on the outside" as my friends who live in the institutions call it, you decide how much privacy you want. If you like people around all the time, you may choose to live with five or six others. If you don't like noise, then you live with a quiet person. Your phone conversations are private because it's your phone. Your mail is private because you get it from your own mailbox. When people walk into your home, it's because you have invited them. It's your home and you make the rules. It's called "choice."
People who live in institutions or other large facilities have fewer choices to make because many decisions are made for them, including simple decisions that are made for staff convenience or cost savings. Decisions so important and basic to most people that if we insisted on making these decisions for our friends or families people would think we were nuts. When you are 'placed' (my friends and I like to say "incarcerated") many decisions are taken away, like where you will live and with whom, how you will spend your day, and when you will eat, sleep and work. Institutional advocates like to say we can't make choices, don't know how to make good decisions and are not responsible, or that is it easier for us to have to make them our choices.
Making choices about our lives gives all of us pride about who we are and what we have done without lives. I was visiting an institutions here in Illinois just last winter. The day staff came in from a shopping spree with new comforters for 10 people who lived in this "cottage." One of the men who lived there said he wanted a pink bedroom and the staff laughed. I could hardly believe what I heard -- they actually laughed and said "pink is for girls." Well, I have a Mickey Mouse comforter and purple walls and I love it because it's mine. It says something about me. It may not be your choice. In fact, you may think that it was a bad choice, but, it's not yours to make. It's mine.
The bottom line about choices is that in the institution you get to make very few choices and the ones you do make are not the big ones. Living in the community you have opportunities to make choices about all parts of your life, from what comforter you may choose to where and with whom you will live. You even get to make bad choices and live with them. It sounds like making choices is a privilege when it should be the rule.
I want to get a few things straight about this word "consumer" for all people who receive services. Consumer is a funny word to describe people who use some type of support services. When I first heard of people with disabilities called consumers, it was in a skit put on by professionals.
They showed people with disabilities shopping at a store and choosing different foods depending on what they liked. "We (providers of service) should treat people with disabilities as consumers of our goods and services. Our goal should be to provide quality services that people make choices about." It sounds good, doesn't it? But what government agency or service provider is going to say, "If I don't meet the quality and demand of the services you want, then I will go out of business?" People with disabilities don't have control over the money nor do they have many choices about what service provider or type of service they receive. The consumer idea is a nice thought, but really just another name to set us apart as being different from the rest of the world.
From My experiences with institutions and with life "on the outside," there are some things that I know to be true:
Next time people start talking about closing institutions, make sure you're asking and listening to the right people-- those who live there. They know the truth about these places.
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