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And then there were the workshops.

When Will first walked into Access Living, a fine and truly dignified organization dedicated to advancing the rights and full integration of persons with disabilities into the community, the very first question he asked was “Do you have workshops?”

They most certainly did not, as “workshops” (which rarely had work) segregated people with disabilities, seldom taught skills that helped people transition into the community at large, and paid substandard wages.

Will was sold on Access Living from that single answer, though the rest of his experiences there were equally empowering.

It is entirely possible that for some people with more severe disabilities, “sheltered workshops” are, or were, a fine thing. That is a question for another analysis. But for someone like Will, who’s abilities had proven he could live largely independently and hold an “outside” job, they were a human parking garage. He hated them, passionately.

“So”, he told me, “every day, whether we were sick or not, they made us go to the workshop. Ray Graham didn’t want to have to have someone stay at Sunrise Courts with us if we didn’t go. But there was almost never any work.”

What would people DO there when there was no work?

“Some people did nothing. Some people watched tapes on the tv. Or played games.”

So what would he do?

“I’d bring my notebook and practice arithmetic. Or writing. Or I’d read.”

Five days a week. 7 hours a day. Month after month after month. And getting to and from the workshop, that was almost as bad as being there. Will, who was acutely sensitive to being labeled, having experienced the pain of being limited and defined by those labels, segregated and isolated by them, found himself riding in a large van with ‘FOR PERSONS WITH DISABILITIES” inscribed on the sides.

“Why did they have to put that on the van?”, he asked me, angrily, rhetorically. I tried to imagine myself in similar situations. “THE CITY OF CHICAGO BUS FOR PEOPLE WHO  HAVE TROUBLE DRIVING IN THE CITY AND CAN’T AFFORD A TAXI”. “THE COMMUNITY HOSPITAL COURTESY VAN FOR PEOPLE TOO SICK TO DRIVE AND WITHOUT FRIENDS OR FAMILY TO TAKE THEM.”  Having a disability was not a weakness or a flaw, but it was a label that was often used to discriminate and make individuals feel they were different in a negative way – certainly Will loathed being defined by his challenges alone.   I told him I really didn’t know. I suppose it was advertising – of the most insensitive sort imaginable.

Will had had jobs in the community before coming to Ray Graham, and he’d often been “Employee of the Month”. He worked hard, he worked well, and he went to extraordinarily lengths never to be late or absent. He saw a natural dignity in work well done, and was very driven to learn new skills. The same strong, clear vision that directed him in pursuing better reading skills his entire life (up to and including the last lucid days before his death) meant that sitting in front of the video tapes or pointless games the “workshops” (now renamed “Community Learning Centers”, equally deceptive misnomers) was impossible. He had to get out of there. And having gotten out, he would never, he swore to himself, no matter what the alternative was, return. He was not suicidal, not ever. But he was clear on this: He would not return to a life half lived, he would not voluntarily surrender himself to being an exhibit in a human petting zoo. He would, he told me, far rather be homeless – and he meant it. He was fascinated by the homeless, sharply aware of their plight, open to their conversations at coffee shops, libraries, and train stations. He had extraordinary sensitivity to their stories, a willing listener. He was learning, I thought, trying to ascertain how they were surviving. It would never come to that, of course. But I found it sharply poignant and extremely telling: Will was determined that he would choose anything, homelessness, even death, over the loss of dignity and independence he experienced


Comments on: "“One must work and dare if one really wants to live.”" (1)

  1. This is really shocking — I’ve worked mainly with street kids with drug addictions but also with special education students and adults with disabilities to a lesser scale. One part of my job as a counselor involved workshops, but nothing like that. They would last approximately two hours, though some were three, and were entirely optional. If you wanted to learn how to cook, you could come to our cooking workshop, and we would teach you how to make not only spaghettis and microwave dinners, but how to bake muffins from scratch, how to make a homemade bolognese sauce, how to cook a roast, make a stew, anything. Students got to put in requests for recipes, or bring their own from home, and we would go to the grocery store as a group, and the organization I worked for would foot the bill.

    Laundry workshops were fun — we did those for the kids who didn’t know how to do laundry. They could bring their clothes to a laundromat, and we’d provide the money and the detergents, and then teach them how to separate, how much detergent to put in, how to iron their clothes, and how to fold them so they stayed pressed.

    We even had literacy workshops, they involved three hours two times a week of group lessons. We would have licensed special ed teachers come in and teach things like the alphabet, sounding words out, et cetera. For a person like Will, who already had the basics down, we offered one on one tutoring with a custom designed curriculum and always had someone available to answer questions. The same for money-management.

    We worked mostly with more independent kids and adults. The teenagers would often be referred to us by the courts for drug problems, and in the process of helping them overcome their addictions (telling the truth, first and foremost), we would often discover the underlying cause, and we would find them the right therapist for their needs.

    My boss made the same amount I did — €30,000 a year. We all worked overtime, and “forgot” to mark it down — independently, without instruction — we didn’t care about the money, the job was about helping people, and I had, like others, on numerous occasions found myself answering my phone at 4 in the morning because someone was in the midst of a crisis.

    THAT is what it means to be in social work. THAT is what it means to help people. If you are in the field to make a profit, then you need to find other work, and stop cheapening it for people who do actually care.

    Now, three years later, most of the people I worked with back then are stable, independent, and off drugs. They still email me, telling me how wonderful their lives are now. I miss them all.

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