The first time Jewell said that to me I was taken aback. I didn't use the word "crippled" in those days. For years I battled to overcome my aversion to the word -- especially since my hero FDR used it for himself. (I've easily rationalized that; but that's another story.).
Jewell used the word "crippled" easily. "Crippled" was how you felt when society put up so many barriers that you couldn't live a "normal" life, much less a successful one. Society treats people with disabilities like cripples, Jewell said.
Jewell and I didn't like each other at first. She'd grown up in the city, I in the county. She lived with her large family in a small house, we had a large house. I had a master's degree, she'd graduated high school. I was "prim and proper"; she was tough and real.
I think we resisted because others kept trying to get us together:.
The first time I saw Jewell was at a legislative committee meeting in our state capital in the late 1970s. We were all there lobbying for access requirements in the building code.
We didn't meet that day, but we did size each other up. She came with two friends. I sat in the back of the room and watched to see if she was as wonderful as everyone claimed.
They were right about her hair. She had great thick, long red hair (mine was thin, fine and mousy brown). Her waist was small, her chest ample. She wore a bright pink blouse and stiletto heels.
She used a motorized wheelchair, never walked, seldom stood. But she wore high heels! (I wore ballet shoes because they were easy.).
The heels made her legs look great. She sat leaning forward in her chair, looking ready to bolt from the room if something displeased her. She sat with her leg up, ankle across her knee, like guys do.
Her makeup complimented her coloring and her bright eyes. Her nails were long, perfectly shaped, painted. She was striking. I was jealous.
She talked to her friends throughout the meeting -- loudly. She criticized the speakers who were saying that changing the regs would mean increased construction costs, that lowering the height of pay phones would cause problems. Her tone was skeptical, her comments rude (I heard the word "crock" more than once).
I didn't like her. She was making a spectacle of herself. I was sure that she didn't realize how easily she could be heard.
After awhile I realized she didn't care if people were annoyed at her. Her comments were right on target -- and the people around her knew it. Many came up to her afterwards and thanked her and asked more questions. Jewell was not what you'd call "articulate," but she had a way with words.
The first time Jewell and I really talked I was living in the country in a rundown rental house. Living in the country without public transportation meant I couldn't get to town often. I wasn't very involved.
One day, out of the blue, Jewell called me.
We talked small talk for a while about people we knew in common, about our families. "How come you're calling me?" I finally asked.
"Because I think you need a friend," she told me.
She was right. She knew I was isolated. Even though Jewell lived in a big family, she was isolated, too.
From that moment on, Jewell and I were sisters. We grew to trust each other deeply. She helped me with my finances and bookkeeping; I helped her with her grammar and spelling. Jewell was the first disabled women with whom I felt a sisterhood. Our work in disability rights was for each other.
Jewell had charisma. She didn't know she had it; she didn't know the word. But I saw it the first time I saw her. It was the red hair that attracted people, some said. "She's so self-assured she struts," someone else added.
But it was more than that: Jewell had a presence. She would come into a room and heads would turn. She had a strength and determination that made her appear strong.
Our relationship was not perfect. We had some falling-out periods, hard ones like when we got involved with the same man. (That experience made me refine my definition of sisterhood.) But we seemed to always know we'd be honest with each other when we had to be. We always gave each other what we needed at the time.
I knew I would use this Kitty Room to do my writing. I knew the writing would be difficult, even painful, at times. I was prepared to deal with those feelings because I knew the disability stories must be told.
But I wasn't prepared to come in this room to remember Jewell. I thought Jewell would be here, too.
My friend, my sister, Jewell Bourland died in April. She was in her early 50s. I wasn't ready.
I remember the last time she said to me, "Cassie, I don't want to be crippled anymore." I had called her to tell her some good news.
She had just gotten back from the state capital, from our semi-annual ritual of trying to get legislators to understand how liberating personal assistance is; how inexpensive it is -- and how absurd and expensive it is to confine anyone to nursing homes.
Jewell was tough, but she was worn out.
"Cassie, I don't want to be crippled anymore." She would say that when she was tired of the fight. After she'd vented for awhile, I gave her my news: someone was interested in publishing my book.
Without a pause she said, "Are you going to tell them how hard it is being a cripple?"
"Are you going to tell them it doesn't have to be this way? That it's because of their stupid prejudice and their stupid belief that we don't matter? That that's what makes it so much harder than it has to be?"
"Yes," I answered. "I'm going to try."
"Good," she said.