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Along the Highway


Independent Living
By Mike Wojnowicz

Itís 1:00 on a Thursday afternoon ó could be any Thursday afternoon Ė and inside the Center for Independent Living, behind closed doors and a handwritten "Do Not Disturb"sign, a meeting is taking place.

The group doesnít have a name. The monthly newsletter nebulously refers to it as a "lunchtime discussion group." But in actuality, this is not a group at all Ė this is the antithesis of groups. This is the anti-group.

The Center for Independent Living, which aims to help "persons with disabilities become productive, self-sufficient, tax paying citizens," hosts a variety of groups, classes, and services. Cooking groups, budgeting groups, physical therapy classes, self-care classes, legal rights services, transportation services, "and a zillion other" groups, classes, and services.

Holiday bake sales, recreation meetings, snack events, and ornament-making parties.

But Jane Levine, the independent living specialist at the Center, saw the need for something more. She wanted to start a group that functioned like a support group but, unlike other support groups, didnít degenerate into demoralizing bitch-sessions. Hence, the "anti-group." Itís not the typical group of non-disabled people where the disabled person stands out sorely. Itís not the typical group of disabled people which wallows in self-pity. Instead, the anti-group provides the disabled with a "a reprieve from their disabilities" by focusing not on their ailments but on social and intellectual endeavors. So the anti-group gets together, discusses current events, debates philosophical issues, swaps gossip, and just plain olí hangs out.

"The big draw for me is nobody in that room is drawn to groups," Levine says. "Everyone is suspicious of doing something where a group is part of it. We all like the idea of being in an anti-group."

Some people love hard-boiled eggs. They could form a hard-boiled egg loversí club. But even if they did, their central commonality would still be less precarious than the commonality uniting the ten people gathered in the backroom of the Center for Independent Living. The group is united in that all members have a real or imagined disability, and as such other important traits, traits like intelligence, traits that usually donít deviate much in a single location, follow weird distributions. The anti-group said goodbye to the bell curve and smashed together the extremes.

Here, people like Ed and Duwayne are equals. Ed, a brilliant, well-read man, qualifies for the group because of his wheelchair. Duwayne qualifies because of severe mental retardation.

Here, people like Augustine and Sal are equals. Augustine is a slow-learning Hispanic who doesnít talk much. Sal is a normal senior citizen in every way except for his lack of sight.

It doesnít take long for these personalities and disabilities to make themselves apparent. As Jane Levine reads excerpts from Newsweek out loud (Hillary Clinton is running for president; the Internet may be addictive; how do the families of the Egyptair crash victims feel?), the group, anti-group, or whatever it is, sits around the huge circular desk and in complete behavioral discord repeats random phrases, claps, cheers, speaks about irrelevant topics, and starts massaging each other, and all the while Ed and blind Sal, the two without brain damage, watch quietly.

Soon, Jane Levine and Ed enter into a heated debate based on the computer article. Jane lauds the common use of computers, which allows easy access of information. Just last night, she used www.askjeeves.com to find the American Disabilities Act in a mere three seconds.

But Ed doesnít like the Internet.

"There are a lot of disreputable sources out there on the Internet," says Ed. "And in reference to the chat rooms, I prefer talking to another living, breathing individual."

"YEAH," says Lonnie, a mentally retarded black man whose eyeglasses look like swimming goggles.

"I also like the physical activity of going to my mailbox," says Ed. "Itís something physical. In a general sense computers are more of a bother and theyíre not worth the effort."

"OKAY," says Lonnie.

In the middle of all the reading, Jane Levine calls Shands Hospital so the group can speak to Nancy by speakerphone. Nancy, a fellow Thursday afternoon anti-grouper, is now stuck in the hospital, where she will receive a bone marrow transplant later on in the week.

Jane Levine dials the number, and the phone rings a good three or four times.

"Canít get through," says one woman.

"Well, at least itís ringing," says Jane Levine.

"Ringing," says Lonnie.

Someone finally picks up on the other end.

"Hey, can I speak to Nancy Stevenson, please?" asks Jane Levine.

"Rinnnnnnnnnnginnnnng," says Lonnie.

When the group finally gets hold of Nancy, they talk to her one-at-a-time, offering their condolences and words of encouragement. Then Jane Levine plays a song for Nancy over the radio.

Song: "I want a hippopotamus for Christmas."

Lonnie: "ómas."

Song: "I donít think anything else will do."

Lonnie: "óoo!"

Song: "I donít want a dog or a dinky, dinky toy."

Lonnie: "Toy."

Song: "All I want is a hippopotamus."

Ed watches from his wheelchair as a guy with long, Jesus-like, scraggy hair rocks back and forth, as the group sings along, as Lonnie repeats the last syllable or two of each verse just slightly too late.

Jane Levine is quite fond of Ed. Although she has failed to alter his support of the death penalty, a huge goal of hers, she thrives off their discussions on that and many other issues.

"His IQ is through the roof," she says.

This anti-group is just perfect for people like him, people who may not get out much because of their disabilities.

"Itís isolating in a lot of cases when you donít work, when youíre on S.S.I. But you can come into our group, and whatever the heck you have, youíre accepted."

Jane Levine doesnít find it difficult to establish a sense of acceptance among the different levels of intellect. She just goes on reading Newsweek, week after week, refusing to dumb down the meetings for someone like Lonnie.

"When you doubt if people like him are really catching on, they areÖ.Nobodyís making anybody be in there, and yet they never miss [the meetings]."

Amanda Ė a 41-year-old, squinty-eyed black wearing a sunhat Ė provides perhaps the best example of someone who might be "catching on" a lot more than people notice.

"You see people with one-twentieth her compassion and one-tenth her intellect judging her," Levine says.

And itís easy to see why. Amandaís most striking quality is her impulsive, Lonnie-like responding to the Newsweek articles, usually in a slow, dragging voice which perhaps overemphasizes her mental disability.

Her second most striking quality is her unabashedness. An hour into the meeting, she silently got up during Levineís reading of "Campaign 2000: Hunkering Down for the Mean Season" and started making the rounds, massaging everyone in the room, even the strangers, choosing with a near mathematical orderliness from a reservoir of phrases such as "One of these days, when you get my age, youíll thank me," or "If I bruise a muscle, donít take me to Peopleís Court."

Ten years ago, Amanda suffered brain damage when doctors excised three brain tumors from her head. Sheíll tell people this without embarrassment. When she introduced herself to me at the end of the meeting, she looked to a friend and said, "Tell him three things. I got three problems. I canít see; I got brain damage; and I have seizures."

She put her hand on my shoulder. "I can sing, too."

She started singing a song about being the prettiest girl in the country, and the irony of the lyrics, the genuineness of her voice, and her almost professional vibrato was nearly too much for me.

I quickly found in her Ė once I got past her deceivingly slow speech, her lack of social inhibition, and her unconventional thought style ó the height of compassion and intellect.

Her homemade poetry journal could sell at Barnes and Noble. Take, for example, her brilliant and moving "A poem about feelings."

When there is nowhere else to go
And life seems to be moving a little slow
Just remember you have nothing to fear
Happier times will soon be here
When all your days seem long
And all your days have all gone wrong
Donít break down and cry
Just let that day just whisk on by
When they look at you and shake their head
Donít mope around wishing you were dead
Because you are sweet as anyone can be
And these are the things that they cannot see
And the reason you didnít already know
Is because no one took the time to tell you so.

And as the meeting drew to a close, Amanda walked up to Jane Levine, independent living specialist, and told her that she wanted to write a new poem for Nancy, to help her feel better about her stay in the hospital.

In her brilliance, in her compassion, in her striving, in her contentment, Amanda is the apotheosis of what the Independent Living movement is all about Ė "Dignity and self-respect. Self-fulfillment. And other ĎintangiblesíÖ."

You know, the things people cannot see.

The reason you didnít already know this? No one took the time to tell you so.

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Along The Highway
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