PREFACE
My time in a union shop working with my father at a ceiling-tile factory rife with asbestos, and my grandfather’s death from black lung as a coal miner taught me about exploitive labor practices from the inside out. Those experiences would inform my work around disability and employment.
At first, I wasn’t certain I could offer much, but gradually I would come to understand how broken the system is, how the tens of billions of dollars spent every year in the United States on vocational rehabilitation didn’t produce employment outcomes for workers with the most significant disabilities. In that way I found a purpose. Since then, I’ve tried for the last thirty years to help reform what can be called the disability industrial complex, where money is difficult to track, and the system itself perpetuates remedies that seem only to create more barriers. I would learn that where someone lives, how they work and are paid, and the nonprofits they depend on, are often mired in unproven interventions. I would come to understand how vulnerable workers with disabilities are inside a maze of confounding human service entities. My initiation into this world brought me to a man living in an institution, and he and others I would meet have fueled my interest and passion in telling this story. I think about him often.
I was only given his name. I stood inside the entrance of Central State Hospital in Indianapolis, Indiana, waiting to get patted down. It was my first visit to the institution, in 1992. I was twenty-four and had been working in the field of disability and mental health for two years. The paperwork was mind-numbing, as were the seemingly endless acronyms rattled off during lengthy treatment-team meetings. My official title was “job coach,” and my annual salary was $13,480, less than I had made at the ceiling-tile factory where I’d worked to pay my college tuition and where my dad was still employed.
My type of position had only existed for about a decade. The Americans with Disabilities Act of 1990 had stipulated that workers with disabilities be offered accommodations to help them find real employment, and sometimes that might reasonably include a job coach, someone who can help the worker learn new tasks.1 Without such assistance people with disabilities were often relegated to workshops where it was common—and legal—for them to earn twenty cents an hour or less. In fact, many of the people I tried to help find jobs were instead whisked up and placed in such workshops, sometimes without their consent. I’d seen weekly paychecks that totaled just three dollars for forty hours of work. I’d grown up in a union family, where the norm was to think in terms of others; to fight for your rights and fair wages was also to stand up for your fellow coworkers. When I tried to explain to my father what my job was, how I was trying to help people with disabilities find good jobs, I also told him about the subminimum wages, the cents on the hour that some workers made. He said, “That’s what a union is all about. Oldest trick in the book is when those in charge try to tell those working that they should be happy with what they’re getting, no matter how piss poor.”
Riley, the person I’d come to the hospital to see, was in the process of being transferred out as part of an effort to reduce the number of people in the institution. Even from the very beginning in the United States, people in institutions worked, in what were usually called workhouses or poor-houses.2 Riley was one of hundreds of men and women being “transitioned into the community”—which likely meant being sent to a group home where a day program would be attached that would operate much like a workhouse.
The buildings at the hospital sprawled across 150 acres of smooth green turf and sycamore trees. (Most state mental hospitals I visited had gorgeous campuses that belied the grimy stairwells and darkened restraint rooms behind their walls.) I was aware of the irony of my situation: I, who regularly thought of quitting my job, who could barely get to work on time or comprehend the massive paperwork, who was struggling to leave behind the alcohol and drug habits that had gotten me through my shifts at the ceiling-tile factory—I was being paid to help someone else find rewarding work. It was one of many such hypocrisies in the system: Over-weight case managers reported that obese clients needed behavior plans to address their eating. A residential director who often invited coworkers to take a dip in his hot tub expressed grave concerns about how his “retarded” male clients ogled female staffers. A van driver with bad breath and body odor shamed people with disabilities for having poor hygiene.
The woman frisking me wore a name tag that read “Supervisor III.” She waved a metal-detector wand over me while chatting with a coworker about recipes. After scouring the contents of my book bag, Supervisor III said, “You with that program then?”
I nodded.
She seemed to pity me. “All you’re gonna do is rile them up.” She handed me my keys without meeting my eye.
I feared she might be right. The first in my family to attend college, I was out of my element in human services and felt more than a little like a phony. I’d grown up on farms and had held only factory, fast-food, and cleaning jobs before this one. There was both disability and mental illness in my family, plus addiction, and we’d lived on the brink of poverty most of our lives. I’d taken this job hoping to use my degree, but I was afraid I didn’t have what it took to be valued for my mind and not my strong back. Most of all I worried I’d have to return to the factory in Lagro, Indiana, and become a “lifer”—the term the union men used for a foolish fellow who’d spent money on a college degree and ended up working in the warehouse anyway, too scared to leave. Still, there was a part of me that sensed I was in the right place, doing the work I was supposed to, even if I didn’t have much confidence in my skills.
The truth is, I’d had a hard time letting go of the factory. I often drove more than two hours on the weekends—and some weeknights, too—just to sit with my dad and the union men, eat sandwiches, and smoke. Some nights we’d leave the factory at midnight and drive to the Hoosier Point for a pancake “breakfast.” Afterward I’d stand in the parking lot with my dad and the other men, feeling anxious and barely able to breathe. I wanted to stay with them, roll up my sleeves, and let sweat and physical effort rule. In college I’d taken a labor-relations class, and the professor was interested in me because I was a member of the United Paper Workers Union. She had introduced me to Asa Randolph, who in 1925 had organized and led the Brotherhood of Sleeping Car Porters, the first predominantly African-American labor union. The professor had assigned the class an essay based on one of Randolph’s most iconic quotes: “The labor movement has always been the haven for the dispossessed, the despised, the neglected, the downtrodden, the poor.” I had memorized it, and I thought about it as I waited to meet Riley. In fact, I’d worked in the ceiling-tile factory with a few men who would likely be labeled with some type of intellectual disability. Some couldn’t write, several others couldn’t read, and more than a few had trouble with learning new tasks. They had the union on their side though, and it had aided them in finding and keeping a job with a living wage.
After walking what seemed like a mile in a fog of bleach and Pine-Sol, I finally approached room 203. Riley was one of the last on his wing to go. From his chart, which I’d been handed the Friday before, I knew he was ten years older than I, less than five feet tall, and had been labeled with numerous deficits and problems. I half expected him to be unresponsive and living in squalor, but he sat on his neatly made twin bed, reading an issue of Prairie Farmer. When he saw me in the doorway, he smiled a gap-toothed grin, stood up, and placed the magazine on an end table beside a neatly arranged Bible, a yellow comb, and a container of talcum powder. The cinder block room also contained a small writing desk, a single folding chair, and for reasons I never did find out, a large oil drum lined with a trash bag. On a solitary shelf above the bed gleamed a clear plastic Polaroid Sun 600 Instamatic camera and a brown leather carrying case, obviously oiled with care. It was hard to imagine that Riley had lived there for twenty years. I thought of my own apartment, where the bed was unmade, the sheets unwashed, the floor strewn with clothes.
Riley bowed slightly to me and extended his hand. He wore corduroys, a thin gray sweater, white socks, and brown penny loafers with nickels under the straps. His chart said he’d been abandoned by his parents some twenty years earlier and didn’t speak. “Deaf and dumb” was how the paperwork put it. It also said he was “easily agitated, prone to fits, stubbornly defiant.” I had started to learn that what was written in the official charts rarely fit the person before me.
“My name is Doug,” I said. “I’m your job coach.”
Riley’s dark-brown eyes examined my face closely, as if he might be trying to remember me from somewhere. Then he sat back down on the bed and picked at his cuticles as I pulled up the folding chair and fumbled with my paperwork. I’d been told there was to be a treatment-team meeting where I’d be filled in on Riley’s case, but by the looks of things, it would be just Riley and me. Canceling meetings with no warning was so commonplace in the human-service field it had its own acronym: USWN, for unscheduled without notice.
As I arranged my forms, Riley didn’t appear defiant or unruly—more like shyly eager. I clicked my pen and read the first question: “What do you like to do with your spare time?” Too late, I recalled that Riley couldn’t hear. He stared intently at my face. “Sorry,” I said, and Riley waved my apology off as if he’d heard it. I apologized again, and he shook his head as if to say it was nothing to worry over. It dawned on me that he was reading my lips. I asked if that’s what he was doing, exaggerating my words the way people do who don’t know any better, and he nodded and smiled. “But that’s not in your chart,” I said. I rifled through the intake forms and handwritten notes going back two years. Riley began to look bored. I excused myself and left.
At an oval island desk in what once must have been a busy central area, I found a lone woman shoving paperwork into boxes labeled storage. I asked if she knew Riley and explained that I was there to help him find a job. She wished me luck, saying Riley never wanted to do his chores.
I asked if he read lips, and she replied, “Not that I know of, no. But he understands just fine; don’t let him fool you.”
The woman turned to answer the phone, and I hurried back to Riley’s room, where he was fiddling with the camera. He offered it to me, and I looked it over. “Very nice,” I said, handing it back. “Do you like photography?”
Riley passed the camera to me again. “Do you want me to have it?” I asked.
He grabbed it and furrowed his brow. He was trying to communicate something to me, but I wasn’t getting it. He stomped one of his loafers, the nickel gleaming. Finally, he reached for my hand and placed my fingertips where the film was inserted, examining my face as if to see if I understood.
“Film?”
Riley nodded his head with such force I could hear his vertebrae pop. Then he opened the single drawer of the writing desk and extracted a stack of Polaroids. We sat on the bed together and went through them. There must have been a hundred or more pictures—of the staff, of the institutional grounds, of the cafeteria, of the doctors and nurses, their white coats turning ocher on the aging film. Some of the Polaroids near the end clearly dated from the 1970s, showing people in bell-bottoms with long, straight hair and wide shirt collars.
The rest of the afternoon I followed Riley around the state hospital. Other than the woman I’d talked to at the desk, there was only a handful of staff left on his wing. We passed bulletin boards that held everything from current news clippings to yellowing, mimeographed memos. Riley would stop and examine each board, then walk to the next. At dinnertime we entered a nearly silent cafeteria, where we ate chipped beef over toast with green beans and fruit cocktail. I hadn’t drunk milk from a tiny carton since grade school. Before long, I returned with Riley to his lonely wing. A new woman was at the island desk. “Hold on,” she said when she saw me. “Where’s your visitor’s pass?”
“I didn’t get one,” I said, looking around, as if someone might appear with one for me. “I signed in though.”
The woman insisted I wasn’t allowed on the ward without a pass, and she took hold of Riley’s arm and marched him to his room. The setting sun shone through the windows as Riley disappeared. I stood there for a while, not wanting to go home to my unkempt apartment.
I returned to Central State Hospital two days later. Riley was in his room, polishing the camera’s lens with a sock. I sat down next to him on his sagging bed and touched his arm. He stopped what he was doing and stared at my mouth.
“I’m not sure I can help you,” I said.
Riley went back to cleaning the camera. He was fastidious, sometimes smelling faintly of bleach, his brown hair cut short and combed so purposefully that the lines of it reminded me of a newly planted field. He stood and placed the camera carefully on the shelf, then motioned for me to follow him.
We walked the hospital grounds. I was beginning to understand Riley better: the way he pointed, nodded, cut his eyes to the side. The few words he spoke wore him out, but he seemed to like it when I talked. We passed a fenced-off pond and climbed a green hill dotted with sycamore saplings like candles on a cake.
“What about a job working with cameras?” I asked.
Riley nodded and pretended he was taking pictures.
“I’ll see what I can find,” I told him. The sun was starting to set, the light turning golden. Riley’s digital wristwatch chimed, and he shut off the alarm and started toward the cafeteria. I followed, and I was struck again with how competent he was.
The following Monday I signed Riley out, and we hit the road. He was so short that the bucket seat of my ratty Caprice swallowed him up. He held his Polaroid 600 in his lap like a religious relic.
Our first stop was a pharmacy. Riley knew where the right film would be. He approached the glass case and peered in. I asked the woman behind the counter for ten packs of Insta-Color, enough to take eighty photos. As she started stacking them on the counter, Riley nodded and didn’t take his eyes off the film. Afterward we got burgers, shakes, and fries at a drive-through, and I drove to a park. We ate quickly. Riley got out of the car with his camera and a pack of film. At a picnic table Riley ripped open the pack and expertly fitted the film into place. He sat for a moment, looking down at the camera in his lap. He’d had it a long time and had used it to capture images of the people who had come in and out of his life.
Riley took just three carefully chosen pictures that day: a sycamore tree with a crow perched on a limb; a man with a long beard sitting on a bench; and two white poodles that looked exactly alike. After a few hours my beeper started trilling—no doubt someone at the institution had complained that we’d been gone too long. In the car Riley kept arranging the three Polaroids along his thigh, touching their edges lightly, making imperceptible adjustments.
On the hospital’s front steps, we were greeted by a staff member with a goatee and kind eyes who put his arm around Riley and asked if he’d seen any pretty ladies. The man introduced himself to me as Sid. Riley handed me the camera, and I snapped a picture of the two of them. After it developed, Sid pointed to Riley’s image and asked who that handsome devil was. Then the two of them started using sign language.
“I didn’t know Riley signed,” I said.
Sid explained that neither of them was fluent; it was a little American Sign Language mixed with gestures they’d devised.
That’s when I recognized Sid from the Polaroids in Riley’s desk drawer. He was the man in the denim shirt with the black hair past his shoulders—only now it was short and graying.
As I turned to leave, Riley and Sid were on their way back inside the cavernous building. Right before the door closed, Riley stopped Sid and snapped a photo, pulling it from the camera, and blowing on it.
On my last trip to the factory, after the others had fired up their trucks and slowly exited the parking lot, Dad got a squeegee and Windex from his truck and started to clean the windows of my car. He said they were so dirty, he didn’t understand how I could see out of the goddamn things. When he was finished, he adjusted his cap, lit a Salem, and exhaled smoke. I’d seen the expression on his face before. He was trying to get the words to come. Crickets chirruped, the power station hummed, and light flickered from the dock doors. After a long moment Dad said, “I like the visits, son. . . .” He looked away toward the dark road in front of the factory. My throat ached as if I’d swallowed a golf ball.
“You got a lot of work there in Indianapolis,” Dad said. “You should try hard. Don’t think it’ll come easy.” I think he knew I was stuck between the working life I’d always known and one I still didn’t understand. He got in his truck and started the engine. “Be careful on the bypass,” he said. I thought I’d heard a quaver in his voice, but I couldn’t be certain. I watched as he turned onto the road and disappeared. The factory and my union upbringing would serve me well in my new profession for years to come.
After the drive back to my empty apartment, I tried typing a basic résumé for Riley on my electric typewriter. By morning I’d slept only a couple of hours, and I rushed to make copies at the Kinko’s down the street. The resume didn’t have much on it, just the few small jobs the institution provided Riley, sweeping, mopping, some landscaping. Under hobbies, I emphasized his photography.
I had work to do for the rest of the people I’d been assigned to help find jobs, but I picked up Riley every other day. I wanted to get to know him better. We had a beer at a pub in Broad Ripple, a little village north of downtown. We played Putt-Putt golf. We jogged in Eagle Creek Park. (Riley wasn’t fast, but he loved the running shoes I’d bought him.) We took tours of my friends’ workplaces: one worked at a vet; another operated a carpet-cleaning business. We visited the fire station, the library, the fair-grounds, the zoo, the university campuses. We volunteered at a homeless shelter, where Riley took Polaroids of people as they received their paper plates of white bread and meat loaf. He gave them the photos to keep.
On days when I didn’t visit, I missed Riley. At night, when I felt tempted to smoke and drink, I pictured him lying alone in his dormitory room, the Polaroid camera on the shelf above him, the nearly abandoned wing deathly quiet. I was trying hard to find him a job. I’d cut back on beer and weed and focused on contacting employers, but none of the fast-food places was interested in hiring someone who didn’t speak much or hear. I stayed up late paging through classified ads and picking up my apartment. I cleaned the tub, vacuumed, and put away laundry. I called my dad at the warehouse to talk about the union negotiations, and he seemed relieved that I was phoning him from Indianapolis and not coming to see him in person. In the morning I went to the department of labor office and copied job listings. Most were for landscaping, construction, and telemarketing, but one stood out: Robert’s Camera Shop needed a salesperson. I knew Riley wouldn’t be a perfect fit—he couldn’t talk to customers—but maybe he could do something there, maybe they’d see his passion for photography. I made an appointment with a manager, telling him I was interested in the position myself.
The next day I went to the meeting and explained my real purpose. It was an awkward part of my job: How much should I reveal up front? The manager agreed to meet Riley, and I rushed to the state hospital. On the way, I made a list in my head of what Riley would need: a jacket, a necktie, some cologne.
In the hospital parking lot I noticed news vans lined up along the sidewalk and a fleet of vehicles with government tags. Two more news vans arrived, their back doors opening before they even came to a full stop.
I got out of my car and headed for the front entrance of Riley’s building, but a security guard stopped me. “Not today,” he said.
I asked what was going on.
“We’re on lockdown,” he said.
“Why?” I asked, worried about Riley, but the security guard just went back inside and locked the door. On the steps where I’d taken Sid and Riley’s picture, a podium had been erected, and folding chairs were arranged at the bottom for the media. My pager was going off over and over: my boss, my coworkers, and other numbers I didn’t recognize. I waited around rather than drive back to the office, trying to remember where Riley’s room was as I peered up at the third floor.
After an hour or more the hospital administrator and the governor’s public-relations staff read prepared statements. Apparently, someone had died overnight: a woman had been found drowned in a bathtub. The administrator announced that he and his staff would cooperate fully with the governor’s office to determine what had gone wrong. Then the press conference was over.
I made one last attempt to get inside, but the door was locked. A placard on the window said the hospital would resume normal visiting hours once the situation had been resolved. I walked back to my car, looking over my shoulder as if hoping to see Riley exiting the front doors with Sid and his camera. I stayed in the parking lot until most of the other vehicles had left. By then my beeper had gone dead.
That night at my apartment I watched the news. There was talk of a grand-jury investigation surrounding the bathtub drowning and another case in which a person had frozen to death in bed because a window had been left open. Over the next month more charges of abuse and neglect emerged. There were plans to close the hospital completely. My every attempt at visiting Riley was thwarted. I was no longer on the list and getting back on it seemed impossible. Where once there’d been a paucity of staff, now the place seemed overrun by professionals.
Weeks went by, and I worked with the rest of the people on my caseload, the strange term echoing in my head, as if the people I was trying to help were burdens packed in a case. Sitting at my desk one afternoon, I opened a letter that said Riley would no longer need my services. He’d been admitted to a workshop program up north, on the Illinois border. The memo listed the reason for Riley’s move as “IS-ADLs for employment.” I went in search of someone to explain the acronym and learned that it stood for “insufficient activities of daily living.” I thought of Riley’s neatly made bed, and how he’d taught himself lip-reading and some sign language. I thought of how he’d survived for decades in the institution—something I did not think I could have done myself.
I called the hospital, pretending I needed Riley to sign something, but the receptionist told me to put it in the mail. Finally, I asked my boss if I could talk to her. She was carrying a load of files, and I followed her into a room lined with filing cabinets.
“I need some help getting to see the guy at Central State,” I said. “They won’t let me in.”
She dropped the stack of files on her desk, sat down, and blew hair out of her eyes. She wished she could help, she said, but with the investigation, there was nothing she could do. “Try focusing on the other people on your caseload.” That phrase sounded even more ridiculous.
“But I was so close,” I said. I told her I couldn’t get his face out of my mind.
My boss handed me a tissue and said, “Look, this work isn’t for everyone.” She told me there was no way to do it well and not let it get to you.
Back at my desk I pictured Riley riding in a van up north, looking out the window at the flat fields going by. I hoped that Sid would get to ride with him and that there’d be a few stops where Riley could take pictures. Later I sent more packs of film to an address I’d tracked down for him, but I never saw Riley again. I still have some of those Polaroids, including a blurry one that Sid took of Riley and me together, sitting on a bench at the hospital. If I focus hard enough on his face, I can almost make out his expression.
Like so many, though, Riley was lost inside a system that purported to help him, but he and multitudes of others were primarily seen as cheap labor, with added revenue attached in the way of billing state and federal funding sources. As Dr. Amos Wilson, the revered author and professor of psychology, stated so clearly, “If you want to understand any problem in America, you need to focus on who profits from that problem, not who suffers from the problem.”
That focus suggested by Dr. Wilson is important as a foundation to understand the issue of paying subminimum wages to workers with disabilities. The legality of doing so is both a symptom of—and a catalyst for—the disability industrial complex, which, like our military industrial complex, is often hidden and sometimes byzantine, and represents tens of billions of dollars of funding each year. With little input from the citizens that pay for it, these systems are lacking in concrete, measurable outcomes. These are the themes of this book, along with a focus on the history of what it means to live in America with a significant disability, specifically those disability labels referred to as intellectual and developmental. I attempt to cover the story of subminimum wages in the light of the battle by advocates to consider disability rights as civil rights. We will go into the details of the Goodwill boycotts related to subminimum wages, and we will meet Anil Lewis, a self-proclaimed “blind, black man from the South.” Mr. Lewis was instrumental in conceiving the boycotts. He told me in an interview on the use of subminimum wages, “I know how to deal with racism, but when someone is telling everyone they’re doing God’s work, that’s an insidious benevolence. That’s not the God I know, the God I know freed the Hebrews, he didn’t give them more straw, he set them free.” Lewis was originally labeled educably mentally retarded, but eventually he became the first member of his family to graduate from college.3 He’s currently the executive director for blindness initiatives for the National Federation of the Blind—and an outstanding oratorical advocate.
Mr. Lewis and many others represent what is at stake. How does one live and work in America with a significant disability when the systems are soaked in our uniquely peculiar American practices of special-interest lobbying, marginalization, and fundamental resistance to change?