Column from November 9, 1999
ADAPT or Perish
Copyright 1995 by Laura Hershey
[NOTE: The following is an older article. It was originally published in the November 1996
issue of Sojourner: A Women's Forum, an excellent newspaper. I have decided to reprint
this article here this week, partly to honor all ADAPT members for their unrelenting,
militant commitment to freeing people from nursing homes through attendant services. I'm
also offering it as a more specific tribute to two particular ADAPT members who appear in
this story-- Wynelle Carson, who died a couple of years ago; and Phyllis Burkhead, who
died last week. Both will be sorely missed by their friends, and by the movement.
Other things have changed, too, since this story was written. Life is all about change. This
piece is just a snapshot, a vivid memory, a moment in time.]
I'm number forty-eight in a line of people that bends around two sides of a square city block. Far ahead, the line ends at the elevator to the Federal South Metro stop in Washington, DC. The line snakes slowly into the elevator door, as if burrowing a hole in hard ground. Only two crips can enter at one time; then a couple of A.B.'s might squeeze themselves in around the wheelchairs. This is taking forever. I'm hungry; I'm tired. I want to go lie down in the fresh cool sheets of the hotel bed. I feel like whining. So does everyone, but no one does.
I'm thinking, Where do we get the patience for this? In general, we are not patient people. We aren't patient about HHS and Medicaid pouring billions of dollars into nursing home corporations while, in most states, disabled people young and old are denied funding for the basic assistance they need to stay in their own homes.
We were not patient this morning, at the Capitol, when a Newt Gingrich flunky brought word that the Speaker would consider meeting with ADAPT-- American Disabled for Attendant Programs Today -- at some unspecified future time. We have him, on videotape, promising us legislation to guarantee the availability of attendant services in every state. That was a year ago. Now that he's Speaker of the House, and in a position to deliver, he won't see us.
We left the Capitol, then reassembled on the lawns and driveways surrounding the apartment where Gingrich lives. We picnicked on the sloping grass, devouring box loads of McDonald's greasy hamburgers and pale, moribund salads. We filled the lobby of the management company for Newt's upscale apartment building. We chanted, loud and hard: "Who do we want?" "Gingrich!" "When do we want him?" "NOW!"
It's hard to ignore three or four hundred disabled people,
amassed on your front lawn, shouting-- but Gingrich did
his best today. I smile as I think about that day's action.
Caught between Gingrich's resolute indifference, and the
District of Columbia Police Department's reluctance to
jail us all, we stayed anyway, seeking ways both to
entertain ourselves, and to keep the pressure on. For a
while, our protest turned into something like a jamboree;
spontaneous music and comedy mingled with our
chanting. Johnny Crescendo, his rainbow striped hat
drawing the crowd's eyes like a spotlight, sang several
stirring political ballads he's written. He stood in front of his wheelchair, swaying on his braces as
he sang through the
megaphone.
Next the megaphone passed to Jimmie Schroeder. He hadn't asked for it and didn't know what to do with it, but his dry, understated humor came out of its own accord. Pointing the horn at an upper-story window, Jimmie pleaded, "Come on down; we just want to talk"-- as if he were old Father Flanagan, trying to persuade Newt to release all hostages and stop sniping at passers-by.
I move forward a little, following the slow snake toward its hole. I look at the line again. I'm probably number forty-two or so. I haven't even turned the corner yet.
The slow line to the elevator makes me want to move. I bump my chair into Robin's, on purpose. For once she's sitting more or less still, not leading a contingent of marchers, or speeding ahead to confer about strategy. She's resigned to the slowness of the line. Now and then, though, her restless energy flares up, reasserting itself in the form of a pesky concern for my comfort and wellbeing.
"Laura, you're getting sunburned," she warns.
"No I'm not," I answer. "I'm wearing sunscreen."
She asks, "How's your B-L-A-D-D-E-R?", as if the people surrounding us can't spell; as if they would even care. They're all thinking about their own B-L-A-D-D-E-R-S.
Smiling at her, I reply, "F-I-N-E." As if I could do anything about it anyway.
Like Robin, I'm bored, and I'm tired of being stuck under this sun. Three more people get on the elevator; the line creeps forward. I'm thinking, This sucks. But then I start talking with Wynelle Carson. We're both writers and poets, so we keep in touch. I ask about her attendant situation. She tells me her mom is having to stay with her again, since her last attendant left for a better-paying job. She's just hired someone new, but that person wasn't thrilled about losing a week's wages while Wynelle came here to D.C. When she gets back home to Nashville, she's not sure that attendant will still be around.
Brief movement. Number thirty-six. I ask Robin about dinner, what she wants to eat when we get back to the hotel in Maryland. "Chinese," she answers flatly, without hesitation; I can tell she's been thinking about it.
I'm looking around now, up and down the long, slow line, thinking about who we are, all these people, us, me. We are like -- what? a family? Not really. We don't all practice the same religion, watch the same thirty-year-old TV shows. We are a weird mix: tie-dyed hippies, executive directors, artists, old-time civil rights activists, Vietnam veterans, Republicans, rednecks, ex-gang members, grandmothers, and more. We are drawn together, not by a common identity or kinship, but by this gut-deep belief that it's really okay to be a cripple, and that it's not okay to lock people up or kill them just because they are crippled. So we are not exactly family. And yet, so many of these women feel like my older or younger sisters, some of the men my brothers.
Earlier in the week, I caught up with Sybil Feldman. She's a real fighter, in her sixties, with close-cropped gray hair and an emphatic manner. She spent years in a nursing home, and swears she'll die before she ever goes back. I've seen a look she gets when, during our nonviolent protests, she's been arrested for trespassing, or failure to obey a police officer. As she's wheeled into the rented vans that will haul her and scores of others to jail, she'll get this look of calm contentment, as if she's just done a necessary household chore, and done it well.
"Sybil!" I called. "Hey! I thought of a new nickname for you." She looked at me, questioningly. "Sybil Disobedience!"
She roars at this. "You're okay, kid," she tells me, her accent a blend of cerebral palsy and Boston. "You're okay."
I hear movement behind me, so I turn and move forward with the line. I count. I'm number thirty. I'm thinking, This isn't so bad. I look around again, and spot Phyllis Burkhead. Her hand is poised against her joystick, wrist bent back, as if ready to jolt forward the second the line starts moving. Her blond ponytail wags eagerly with the regular tremors of her neck. She's too far away for conversation. Phyllis communicates using a double-sided wooden board that she carries on her lap. She can flip the board either way, depending on how the interaction is going. On the front are the letters of the alphabet, numbers, and a few key words like "yes," "no," and "Phyllis." On the back are just two words: "Fuck you."
I'm thinking how I love our anger, our lack of politeness, our beautiful rough edges.
As I make my way, on the narrow curb, around the street corner, I calculate my remaining wait for the elevator. Half a block to go, twenty-six people, maybe another forty-five minutes.
I'm bored. I'm hungry. I'm thinking about boredom and hunger. I'm thinking about Sherry Shupe, back in Colorado. At Terrace Heights Nursing Home in Boulder, Sherry lies in her bed, the TV turned to a channel she probably didn't choose. The nurse's aides like to watch their shows when they come into her room. They get her up into her wheelchair three times a day: for a twenty-minute, pureed breakfast; a twenty-minute, pureed lunch; and a twenty-minute, pureed dinner. She wants out of Terrace Heights. She wants her own apartment, with a roommate.
Every other Wednesday, Sherry comes to a meeting about attendant services, which I facilitate. We order pizza for lunch. Assisted by someone else's attendant, Sherry eats two or three big slices of pepperoni pizza. She always says, as she's eating, "This pizza is really good." They don't feed her pizza at the nursing home. They don't feed her any solid food at all. She eats slowly, needs time to chew and swallow. Feeding her real food is too much trouble.
At every meeting, and every time I visit her at Terrace Heights, Sherry asks, "How long do I have to stay in that place?"
I'm still in line, and I'm hungry. I'm thinking about pizza. I'm thinking about eating pizza, chewing and swallowing.
Number twenty-two now. This line is moving right along! I figure, another half hour, tops. I call "Hi" to Craig Dauer, who is walking quickly down the sidewalk. He stops. "How're you?" I ask.
"Oh Jesus, I'm exhausted," he says, and I'm sure it's true. He's been working almost nonstop since the first plane load of protesters arrived on Saturday, with chairs inevitably damaged by airlines. All day today I've seen him either running, kneeling, or down on his belly on the pavement, fixing the wires, belts and spokes broken by the long march on rough streets. He looks grateful for a chance to take a breather, and to hear a friendly greeting that doesn't contain a plea for his wheelchair repair services. "Need anything?" he asks, just to make sure. He sighs relief when I reassure him my chair is running fine.
Craig recently moved in with his girlfriend, Karen Tamley, Robin's friend and co-worker in the ADAPT office back home. The four of us go out together sometimes. I'm sure, to many people, we look like an odd group. Three women in chairs, and a guy walking. "Double date" is not the first concept that leaps to the mind of most strangers. It seems ordinary to us, and to this community around us -- unlike in other crip circles, even. You know what I mean? Go to a rock concert. Check out the wheelchair accessible section. You see the same thing, up and down the row. Young guys, paras or low quads, their spinal cords injured by shallow ponds or motorcycles or maybe a bullet -- the hazards of machismo. And right next to each one, as if part of the standard equipment, stands a slender, athletic young woman. I always think it's a way for these boys to show how tough, how normal, they still are.
In ADAPT it's different. Having a nondisabled partner carries no particular status, and you find couples in every combination: crip girls with A.B. guys, crip guys with A.B. girls, crip guys with crip girls, crip girls with crip girls, crip girls with A.B. girls, crip guys with crip guys, crip guys with A.B. guys, etc., etc.
Many of these relationships have been forged in fire, in what we regard as a battle of a peaceful sort. We joke that ADAPT is one big dating service, but it's deeper than that. Many of us feel marginalized from American society, and from it's arbitrary norms of health, beauty, family structures and economic roles. With ADAPT we're building our own new structures and norms. We are building families defiant of old definitions; we're building communities we can truly be part of.
Brief movement. Number fifteen. Still a while to wait. But what can you do? The elevator is small, and it's a long way down.