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Independent
Living Its 1:00 on a Thursday afternoon could be any Thursday afternoon
and inside the Center for Independent Living, behind closed doors and
a handwritten "Do Not Disturb"sign, a meeting is taking place. The group doesnt 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 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, didnt degenerate
into demoralizing bitch-sessions. Hence, the "anti-group." Its
not the typical group of non-disabled people where the disabled person
stands out sorely. Its 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 ol 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
lovers 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
dont 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 doesnt talk much. Sal is a normal senior
citizen in every way except for his lack of sight. It doesnt 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 doesnt 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. "Its something physical. In a general sense computers are
more of a bother and theyre 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. "Cant get through," says one woman. "Well, at least its 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: "mas." Song: "I dont think anything else will do." Lonnie: "oo!" Song: "I dont 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. "Its isolating in a lot of cases when you dont work, when
youre on S.S.I. But you can come into our group, and whatever the heck
you have, youre accepted." Jane Levine doesnt 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
are
.Nobodys making anybody be in there, and yet they never miss [the
meetings]." Amanda a 41-year-old, squinty-eyed black wearing a sunhat
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 its easy to see why. Amandas 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 Levines 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, youll thank me," or
"If I bruise a muscle, dont take me to Peoples Court." Ten years ago, Amanda suffered brain damage when doctors excised three
brain tumors from her head. Shell 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 cant 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 once I got past her deceivingly slow speech,
her lack of social inhibition, and her unconventional thought style
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 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 "Dignity and self-respect.
Self-fulfillment. And other intangibles
." You know, the things people cannot see. The reason you didnt already know this? No one took the time to tell
you so. |