From the Kitty Room
by Cass Irvin
Cass Irvin, former publisher of The Disability Rag, now directs Access to the Arts, Inc. She is the author of the memoir, Home Bound (Temple University Press). About the book.
Ourselves, our lives, our times, our truths, our culture. Do we collect it all piece by painful piece, or do we invent it? Does it matter? We've patched together our lives after years of disability, and now we're patching together our culture after decades of fragmentation. We're reinventing ourselves personally, and now we're doing it collectively.
--Barry Corbett, writing in the August, 1998 issue
of New Mobility.
I believe I've finally made the circle. I fled from this room in 1973; I went out from here free at last to live my own life. And now, twenty-five years later, I'm back. I'm here in the room where I spent much of my childhood. This time by design.
I remember when I was twelve noting in my diary that I had spent a whole month--30 days--in this room. Never leaving the room. Never leaving my bed, actually. I was a classic case of "bedridden." It was easier on my mom if I didn't get out of bed and up in my wheelchair. So I didn't.
This is not a big room. It's smaller still if it's your whole world. For too many years, it was my whole world. In 1954 I got polio. I couldn't walk anymore, so I couldn't go back to the room upstairs I shared with my sister. This room beside the kitchen, the room that had been a nursery, then Daddy's den, the room with the big corner windows became my room and, for too long, my whole world.
I was educated in this room from fifth grade through high school. They called it "Home Instruction for the Homebound." I called it "home tutoring" to try to make it sound a little prestigious. In reality it was an inadequate education. How much can you learn in two hours, one day a week?
I missed adolescence--I was here instead of in school. (I was able to attend high school for only two hours a day, and then only during junior and senior years). I lived in this room through college and graduate school. And all the while, I used my wheelchair only when I went out. The rest of the time, I was in my bedroom, in bed.
Not asleep, not incapacitated or sick. Just--in bed. My family had a woman come in several times a week; that's all the personal assistance I had, other than my family. Staying in bed just made everything easier.
Once I moved out of my parents' house into my own apartment, I still stayed in the bed a lot (It is really true that some people can be more functional in bed). These rooms, though, were very different from the one I stayed in at my parents' house. In every apartment, in every house I rented, I claimed the biggest room for my bedroom.
Many years later, I moved back to my childhood home after my parents had gone. I made this old bedroom into my dining room. The house has a perfectly beautiful dining room--but I made this room my dining room because, I reasoned, it's the room you're in the least.
When I moved back to this house, I knew I had to deal with sad memories. Sometimes I would sit in my old bedroom (newly christened the dining room) where my bed used to sit and see if it felt or looked the same. The view out the corner windows was the same, but trees are larger and the woods out back seem steeper than I remember (perhaps the rumor about the hill moving is true).
I recognized the black circle stain on the floor where the 30-pound weight had sat when not hanging from a rope from the ceiling with me hanging on the other end in a head sling. The aim had been to "straighten my back." I had hung there for at least twenty minutes a day. How many days, months, years? I don't remember.
It's taken me years to feel comfortable about being in this room. I had many sad times here; I was alone a lot. The years I didn't go to school I was very isolated. I didn't have neighborhood friends. There were no independent living centers back then; no disability groups except for crippled children charities. My mom said I was not like other crippled kids so I did not associate with them.
My mom influenced me a lot: the lessons I learned about disability from her were not accurate. I learned early on not to be a burden. It was easier on my family, for instance, if I didn't wake them in the night. So I learned to occupy my mind with something else. I would concentrate on whatever was keeping me awake and use my imagination to find a way to make it go away.
Sometimes I would become the main character in Topper (a TV show at the time) and have the ghosts in the house help me, like he did--but instead of them moving furniture around and scaring people, my ghosts would move my foot to take pressure off my heel, or get me a drink of water, or put my blanket on. With all that concentrating of my imagination, I'd usually fall asleep--and then wake, suddenly, realizing I was still cold.
Other nights I'd simply wish myself to sleep.
It seems odd to me now, but I never wished for cure. For some reason, I think, I figured that it wasn't a good idea to wish for something too big--better to wish for something that might have a chance of coming true.
I thought about the kids I been in the hospital with and the things they could do. Some could walk, some couldn't sit up by themselves.
After much deliberation, I decided to wish for a straight back, strong lungs and the ability to use my arms again.
My legs? I knew kids who walked; walking was nothing. President Roosevelt didn't walk and he did OK. I could handle being in a wheelchair. I knew if I could use my arms, I could do most things: get in and out of my chair, get dressed, go to the potty.
Soon I'd realize my wishing did no good, and I'd decide that I must be wishing for too much, that maybe I should scale down my wishes so I could get one to come true. Before the night was over, I'd be wishing, "Just arms! Arms are the most important!" If I could just use my arms, I could do a lot, I knew. Legs were expendable, straight backs were expendable.
Maybe I would never have had these wishes at all if mother had taken care of me better. Sometimes I wished I was still in the hospital, because there I could turn on my signal light and someone would come to help me.
When I remember the times I was unafraid and unalone as a child, I find that those were the times was when I was at Warm Springs, Ga. It's a paradox to think an institution can be liberating. But for me it was. I was with kids there, kids like me. I was not confined there as I was at home. Life was accessible to me there. There I learned about life with a disability and how to get along in the world--life lessons. My family, who had little experience with disability, couldn't teach me that.
Some of my friends think I'm obsessed with Warm Springs. But it's a big part of my childhood and adolescence.
It's a part of who I am, it's a part of my heritage. A part of my culture.
Back in 1982, I wrote in The Disability Rag that "Unlike most minority groups, we do not have our own culture and traditions." I was wrong. But I wrote it because at that time I did not have a clear idea what our "culture" was. I thought of culture as one's background, one's mom and dad, one's grandparents. I saw culture as being where one came from. My ancestors were French, German and English; my home, Louisville, has Churchill Downs, and horse racing, too, is part of my background. I'm proud of my heritage, my family background, history, those things that form you as a family, as an ethnic group--and at the time I wrote that piece in The Rag, I didn't see disability in my culture.
My dictionary defines culture as "customary beliefs, social forms, and material traits of a racial, religious or social group." Psychologist Carol Gill once said in The Disability Rag that we people with disabilities are "cultural foster children." "It's hard to know who we are," she said.
My parents taught me everything I needed to know about where I came from and where I was projected to go--but they could do nothing to prepare me for life with a disability. Since the majority of us come from nondisabled parents, too many of us think of ourselves as not disabled. Thus we think we can't connect to disability culture.
We don't grow up with others in our family who've also had the experiences we're now having. We are, for the most part, alone. Not wanting to be alone made me look for family at Warm Springs. That, and my reverence for Franklin D. Roosevelt, generated my search for disability family. I wanted to be a part of his Warm Springs family, but I was born too late. I found a part of it nonetheless.
Many disability activists criticize FDR, suggesting that he's a bad model. I think they make a mistake, taking him out of his time and basing their judgments on 1990s sensibilities, not judging him in his own time as, I believe, he should be judged. I have learned a great deal about disability in America from Franklin Roosevelt. He ran the country from his bed. To me that's a disability hero.
It was my belief in looking toward the past for lessons that sent me looking at my past. Looking at my past meant dealing with the memories of this old bedroom.
I felt the oppression and the loneliness when I first came back to this room. It has taken time, and growing, for me to be able to put those memories, those feelings in the place where they belong.
I realize now I was pretty lucky. I was not poor, my family could afford a child with a disability. Still I was a back room person. My neglects, I discovered, were from misinformation, misconceptions and a lack of adequate personal attendant services.
Several years ago we fixed up this the room. We repainted it, carpeted it, and I turned it into my office. It's the only carpeted room in the house. My kitties love it.
There are other rooms in this house I could have chosen as my office. But I chose this one--to reclaim my memories, my history; and to learn from what I experienced.
Growing up with a disability in America is to experience unconventionalism, confinement and oppression. We have to acknowledge that part of our culture has been oppression: physical, economic, educational, institutional--oppression not always acknowledged; but real nevertheless.
It's sad that part of our past was painful, but it's a tragedy if we don't learn from it. That's why disability folks are coming together and getting involved. That's why we're chronicling and reclaiming our history, why we're teaching disability history, and why we're starting to write about it from our perspective. We are building a disability family, celebrating our culture.
"Skeptics notwithstanding, disability culture is incandescent and spreading," Carol Gill said. "I'm still betting on it to warm this tired world."
I've come back to this room because this is my room. And because I'm expecting those memories give me the energy to help celebrate our culture.
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