Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Laurie, This is wonderful! And, how often have WE been up at midnight? I can relate. Marie > > Going thru old IPADD files today, adding some and purging old out of date files, and came across this old essay written by the adult sister of a 50-some year old with autism. One of the best-written, thought-provoking stories I've ever read. And, of course, it happens to conclude with one of my favorite themes, the importance of community helping to create jobs and meaningful lives for our adults with significant disabilities. I hope I have even half the energy and drive of this 89-year old mother in the story, who never gives up. It's long, but worth a read if you have the time. > > Breakfast At Midnight > > Adults with cognitive disabilities should be able to have jobs to lead useful lives- > > and we know what's needed to make it happen. > > by Judy Karasik > > It 's after eleven o 'clock on a Friday night, and my mother (Joan) > > has beaten me at Scrabble, as usual. As I close up the board, Joan reaches into a > > drawer, pulls out a piece of paper folded in thirds, and hands it over. " See what > > you think of it, " she says, taking a sip of late-night whiskey. > > I see that she's drafted a brochure for families of people with cognitive disabilities- > > families like us-to encourage them to seek out vocational placements for > > their disabled family members. My mother's been an advocate, lobbying and > > working on policy for the past fifty-five years. She's starting to teach me the ropes. > > As I flatten out the homemade trifold, we hear the sound of rushing water. > > " What's that? " I ask. > > " 's taking a shower, " my mother replies. " He's starting his day. " > > " He's starting his day? " I ask. > > " He's been going to bed earlier and earlier, " my mother replies. " He gets up > > around ten-thirty or eleven at night, takes a shower, gets dressed, and stays up > > playing records, watching TV, and, I believe, occasionally sleeping. " > > " How noisy is he? " I ask. > > " It's not too bad, " Joan says. " I had to come downstairs last night and ask him to > > turn down the sound, but mostly I sleep through it. " > > My mother is a very hearty eighty-nine-year-old, but she looks tired. > > A Difficult Visit > > This has been an especially difficult visit with my brother > > , who has lived with autism and mental retardation the whole of his > > fifty-nine years. I wouldn't be playing late-night Scrabble except for the fact > > that is here, and Mom needs company, under the circumstances. > > Dave visits Joan once a month, usually for a long weekend, and twice a year for > > extended periods like this week. He comes to Mom's house from where he lives- > > it's still hard for me to call it his home-in a townhouse about twenty minutes > > away with two other men who also have autism. They coexist, each in his own > > quiet autistic spin. We're lucky to have found a program that includes residential > > placement; many people in his generation with cognitive disabilities live with > > family, including more than 700,000 of them whose caretakers are parents age > > sixty or older. 's residential counselor takes him grocery shopping, and a vocational > > counselor takes him to a thrift shop where he volunteers twice a week for > > a few hours. We're working on getting him a job. He has a daily walk, a weekly > > dance where he sees friends. He doesn't do much else. > > What really wants to do are his writing and his shows. And that's what > > he gets to do at Mom's. writes. In his room at our mother's house, > > maintains a dresser drawer filled with stacks of paper. Sheet after sheet with summaries > > of television shows, mostly from the 1950s and 1960s. He writes and reads > > through the stacks and rearranges the paper. > > also performs television shows. Since we were children, he has performed > > Superman shows, walking through the house, taking all the parts, with dialogue > > apparently selected at random, fragments of actual shows. " Gee, Jimmy, do > > you think the killer's in Mr. White's office? " " What do you think, Miss Lane? " > > He performs interview shows like Meet the Press. My brother sits at the dinner table > > with a water glass at his elbow-he keeps track of the total number of shows > > on a given visit by the count of water glasses on the dining room sideboard-and > > perfectly captures the cadence of wonk talk, although the actual words don't > > make much sense: > > " Mr. Ambassador, should we attempt an intervention in the Middle East? " > > " Well, the United States is ready, powerful, and likely to remain so. " > > A Private Colony Of Mirrors > > 's out of the shower, dressed, and headed to the kitchen. > > " Speaking of , " my mother says, " and speaking of jobs, have you heard > > back from the job developer? " > > At 's annual individual plan meeting two months earlier, the group (consisting > > of , Joan, me, 's residential coordinator, his vocational coordinator, > > and an independent advocate) had decided that an opening at a local big-box > > store would be a good possibility for . Once I'd gotten the official paperwork, > > I'd followed up, to be sure that something was actually done to see that the > > job was still there and if was a good fit. He'd had a job like this one several > > years back-and done brilliantly, promoted from working in the storeroom to > > working on the shop floor with customers-but the place had closed. > > I shake my head. " I started with the vocational director, she referred me to the > > job developer, I left a message, I sent an e-mail, and I haven't heard anything back, " > > I say. " It's been a week since I e-mailed. I was planning to call again Monday. " > > " Do you think we should go out there and meet with them? " Mom asks. > > Then we hear trouble in the kitchen. I head in the direction of the noise. > > 's spilled about half a box of cornflakes. That's unlike him; he knows how > > to get his breakfast. I grab a broom and sweep up while my brother stands at the > > sink gulping down a bowl of cereal, as though he can't eat fast enough. > > " Slow down, Dave, " I say. > > He puts the bowl in the sink and twiddles his fingers, then rakes his scalp. > > " You're Wilbur! " he says, which means he's annoyed with me. > > " I just worry that you're eating your cereal too fast, " I explain. At the dinner table > > recently, has been eating so rapidly that I've been afraid he'd be sick. I > > hadn't understood why he was so anxious to finish and leave the table, but if he's > > been getting up at eleven, no wonder he wants to get to bed before seven-thirty. > > " The invisible cereal, " he says, speaking, as he often does, in the code of , his > > forehead furrowing. " You're Wilbur! Wilbur the mischievous monkey! " > > I shrug and empty the dustpan. > > disappears and a few moments later the sound of a record popular in the > > 1960s-by an Australian named Rolf -blasts its chords from his room. > > " Dave, turn that down, " my mother calls to him. > > " Wilbur! " replies, but the sound fades to a reasonable level. > > What's eating him? I wonder. Thinking about Joan's whiskey, I go to the cupboard > > for a glass for me. The shelf is empty. I look out into the dining room. I hadn't > > noticed earlier, but every glass in the house is out, filled with water, glinting in the > > light, crowding the sideboard, a private colony of mirrors, refracting near-transparent > > shards of energy back and forth among themselves. > > I don't know entirely what all this means, but it doesn't feel good. 's accelerating; > > he lines up his programs months in advance, the programs that soothe him > > and that his autism thrives on. He's doing more and more of them, and the evidence > > of the glasses makes me think that he's dreaming of an infinite and unachievable > > number of shows. He's trading day for night, living in a universe that includes only > > his papers, the shows, his well-worn records. Very little is getting through. > > And it's not making him happy. He digs the grooves deeper, but he's not getting > > the satisfaction he needs. It is as though the repetition is a drug, and he's building > > tolerance to it. He wants more and more, and he's getting less and less. > > It's not that can't connect. A few nights earlier on this visit, our friends > > Peg and Mike had come to dinner. I invited them in part because they know about > > and are relaxed, curious, and big-hearted people. They are both political > > junkies and love the idea of his talk shows; they are charmed that knows the > > middle name of every congressional representative and senator who has served in > > his lifetime. In addition, since Peg's mother has developed substantial dementia > > during the past decade, they are used to fielding the occasional bizarre comment > > and moving right along. > > That evening, the conversation went well, and it included . He stayed > > through dessert, didn't get to bed until almost ten o'clock, and slept until five the > > next morning. > > Needing A Job And Friends > > It 's clear what needs. He needs a job and friends, and he probably > > shouldn't be living with other people with autism. He needs regular contact > > with people whose social skills are superior to his own. He's happier when he's > > connected. And strong evidence indicates that people like my brother have a contribution > > to make in the workplace and as friends. I can say this because society > > has made progress on successfully integrating people like . > > When was growing up in the 1950s, people like him were either kept at > > home or locked up in places where they were treated like infants (if their families > > had money) or like animals (if their families did not have money). stayed at > > home until his thirties, on what could be called a typical life path for someone in > > his generation. Then he lived in a facility in the remote countryside, which was > > state of the art-until society realized that people like were already remote > > enough. Now he lives on an ordinary street in suburbia, near my mother and me. > > That's good-but when you look closely, you can see that it's not enough. In this > > setting, the only nondisabled people knows are his family and the professionals > > and paraprofessionals employed by his organization. So he retreats. > > 's life pales compared to the opportunities of subsequent generations of > > autistic children. This is largely because in 1974, when was twenty-six, the > > federal government enacted the legislation now known as IDEA (the Individuals > > with Disabilities Education Act), and students with developmental disabilities > > were guaranteed entry into the public schools. > > That was thirty-three years ago, and thanks to the law on the one hand and advocates > > on the other, each year greater numbers of children with disabilities have > > entered public school, greater numbers of teachers and administrators have > > learned how to teach them-and they have discovered that there are many more > > aptitudes, skills, and abilities inside these students than they had imagined. > > While the teachers grow to understand how the human brain-in all its astonishing > > variation-works in our population, people with disabilities grow to understand > > the " typical " world. Surrounded by children who are interacting " typically, " > > motivated by the virtually universal urge to conform to peer norms, they > > learn the rules of " typical " communication. In after-school activities, volunteer > > programs, and worship, they share experiences with " typical " children-and their > > presence, in turn, enables inexperienced " typical " kids and adults to get over their > > fears and prejudices. > > Many young citizens with disabilities have been provided with a free and equal > > education. Society has spent a great deal of money to educate our family members. > > The question that remains, however, is: What happens to them-and to our investment- > > after graduation? > > Getting The Right Job Placements > > Effective job placements exist. A range of limited resources and several > > decades of work have created gains that were unimaginable in my > > brother's youth. Today, disability job developers do the hard work of developing > > relationships with a wide range of employers: chain video and drug stores, > > restaurants, offices, hospitals, retail outlets. After job placements, job coaches > > gradually diminish supports as natural supports from colleagues and coworkers > > develop. Public awareness grows every time consumers become familiar with an > > " atypical " employee-and they'll see that employee again, because these employees > > have often proved to be more reliable workers with longer tenure in jobs. > > By restructuring jobs, employers free up other employees from tasks such as > > preparing mailings, making photocopies, unpacking supplies and putting them > > away, filling copier trays and inserting toner, making coffee, setting up rooms for > > meetings, recycling, shelving books in libraries. > > Sometimes people with severe developmental disabilities have outbursts or > > other behavior that disturbs and worries shoppers and coworkers. But many employers > > report benefits to morale that they think balance those risks. They report > > that these " atypical " employees are sociable, enthusiastic, punctual, and cheerful. > > There's a successful placement at our local grocery store. A man with developmental > > disabilities is one of the guys who bag groceries and, when needed, helps get > > the groceries out to customers' cars. He's probably in his mid-twenties. His language > > is heavily ritualistic, but he is fully a part of the team. His job has a measure > > of predictability yet requires flexibility. He had a job coach for a while, and now > > his coworkers continue to look out for him, but he does his job and carries his > > weight. And everybody in the neighborhood knows him and talks with him. > > The problem is that he's the only person with a job like that in my world, despite > > the fact that the public school system is producing qualified young graduates > > every year. Right now, an astonishing 90 percent of all people with developmental > > disabilities are unemployed. These expensive public educations have enabled > > them to develop " typical " behavior, but the system for integrating them into the > > workforce is piecemeal and improvisatory. > > Breakfast At Midnight > > I know well ; he's my brother. And I think that could have > > done a job like that, if he'd started early enough. I believe that if he had more > > connections to people outside his family and beyond his circle of caretakers, he > > would be happier and many times more productive. > > What happened to -and others like him-was a crime. In the past, we > > isolated people like and then accused them of being incapable of having a > > normal conversation or appropriate social skills. We didn't let people like him go > > to public school, and then we drew the conclusion that they couldn't learn how to > > read or write or count. We didn't make the effort to be friendly to people like my > > brother, to show them how we like to interact, and then we feared that they would > > be likely to do something abrupt, frightening, and dangerous. We didn't give our > > s opportunities to connect-and then thought it was only a sign of their > > oddness that they turned to the night, alone in a private world. > > Now we have educated several generations of these Americans-but we haven't > > created the policies and systems that enable them to have jobs. It's not their fault > > that they don't have jobs, it's ours. Let's imagine them as workers, since we've prepared > > them to be workers, and figure out how to open the door so that employment > > is an assumption, not an exception. My mother has taught me that change > > happens because of advocacy at the local level and policy work at the top. I'm calling > > 's job developer, my mom is writing her brochure, but we need more. > > To start with policy: Right now, people like must deliberately earn below > > minimum wage, working few hours or at a low wage, never accumulating enough > > capital to start saving, to keep their income at a low enough level for eligibility for > > the essential supports of Supplemental Security Income (SSI) and Medicaid. This > > gigantic disincentive to work prevents them from growing as employees and from > > building financial assets, both of which they deserve as working adults. In addition, > > because this system stunts hours and achievement, agencies are unable to > > build the critical mass needed for strong workforce programs, and employers and > > human resource departments never experience the full potential of including this > > portion of our population as a regular part of the workforce. One way to break this > > cycle of dependency would be to make it easy for people with cognitive disabilities > > to have one foot in the public benefits world and another in the private income > > world, at least for a period while they develop the skills to keep themselves gainfully > > employed and the savings to ensure their permanent independence. > > As for systems: We need conversations among business, labor, disability agencies, > > and human resource professionals in both the private and public sectors. > > These experts need to imagine a world in which our educated young people with > > disabilities get jobs, develop financial independence, and live right alongside the > > rest of us-and then figure out what they have to do to create the systems that can > > make that happen. They can examine needs, including liability issues, supervision, > > and job restructuring, especially in public agencies. They can figure out the fair > > way to give hiring preference to people with disabilities in selected job categories. > > We have done half the job for the IDEA generation. People with a wide range of > > developmental disabilities are now publicly educated. The next step is jobs. There > > is no point in paying for public educations and raising the expectations of Americans > > like my brother and their families if we don't imagine-and don't put sufficient > > resources into-integrating our s into public life. Without this next > > step, they will lose the ground they've gained. Without this next step, they could > > all end up eating breakfast at midnight. > > > N a r r a t i v e M a t t e r s > > HEALTH A F FA I R S ~ Vo l u m e 2 6 , Nu m b e r 5 1 4 3 1 > > DOI 10.1377/hlthaff.26.5.1431 ©2007 Project HOPE-The People-to-People Health Foundation, Inc. > > Judy Karasik (karasik@...) is a writer and consultant. She lives in Silver Spring, land, and Vitolini, > > Italy. With her brother, cartoonist Karasik, she wrote The Ride Together: A Brother and Sister's > > Memoir of Autism in the Family (Washington Square Press, 2003). > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 Wow, it is definitely worth reading. I can relate to much of it with except that doesn't do the midnight thing and types his stories instead of writing them out now, he used to write them in pencil. He also had stacks of papers but now keeps them neatly in a 4 " " green " binder because it's his favorite color. H. Breakfast at Midnight Going thru old IPADD files today, adding some and purging old out of date files, nd came across this old essay written by the adult sister of a 50-some year old ith autism. One of the best-written, thought-provoking stories I've ever read. nd, of course, it happens to conclude with one of my favorite themes, the mportance of community helping to create jobs and meaningful lives for our dults with significant disabilities. I hope I have even half the energy and rive of this 89-year old mother in the story, who never gives up. It's long, ut worth a read if you have the time. Breakfast At Midnight Adults with cognitive disabilities should be able to have jobs to lead useful ives- and we know what's needed to make it happen. by Judy Karasik It 's after eleven o 'clock on a Friday night, and my mother (Joan) has beaten me at Scrabble, as usual. As I close up the board, Joan reaches into drawer, pulls out a piece of paper folded in thirds, and hands it over. " See hat you think of it, " she says, taking a sip of late-night whiskey. I see that she's drafted a brochure for families of people with cognitive isabilities- families like us-to encourage them to seek out vocational placements for their disabled family members. My mother's been an advocate, lobbying and working on policy for the past fifty-five years. She's starting to teach me the opes. As I flatten out the homemade trifold, we hear the sound of rushing water. " What's that? " I ask. " 's taking a shower, " my mother replies. " He's starting his day. " " He's starting his day? " I ask. " He's been going to bed earlier and earlier, " my mother replies. " He gets up around ten-thirty or eleven at night, takes a shower, gets dressed, and stays up playing records, watching TV, and, I believe, occasionally sleeping. " " How noisy is he? " I ask. " It's not too bad, " Joan says. " I had to come downstairs last night and ask him o turn down the sound, but mostly I sleep through it. " My mother is a very hearty eighty-nine-year-old, but she looks tired. A Difficult Visit This has been an especially difficult visit with my brother , who has lived with autism and mental retardation the whole of his fifty-nine years. I wouldn't be playing late-night Scrabble except for the fact that is here, and Mom needs company, under the circumstances. Dave visits Joan once a month, usually for a long weekend, and twice a year for extended periods like this week. He comes to Mom's house from where he lives- it's still hard for me to call it his home-in a townhouse about twenty minutes away with two other men who also have autism. They coexist, each in his own quiet autistic spin. We're lucky to have found a program that includes esidential placement; many people in his generation with cognitive disabilities live with family, including more than 700,000 of them whose caretakers are parents age sixty or older. 's residential counselor takes him grocery shopping, and a ocational counselor takes him to a thrift shop where he volunteers twice a week for a few hours. We're working on getting him a job. He has a daily walk, a weekly dance where he sees friends. He doesn't do much else. What really wants to do are his writing and his shows. And that's what he gets to do at Mom's. writes. In his room at our mother's house, maintains a dresser drawer filled with stacks of paper. Sheet after sheet with ummaries of television shows, mostly from the 1950s and 1960s. He writes and reads through the stacks and rearranges the paper. also performs television shows. Since we were children, he has performed Superman shows, walking through the house, taking all the parts, with dialogue apparently selected at random, fragments of actual shows. " Gee, Jimmy, do you think the killer's in Mr. White's office? " " What do you think, Miss Lane? " He performs interview shows like Meet the Press. My brother sits at the dinner able with a water glass at his elbow-he keeps track of the total number of shows on a given visit by the count of water glasses on the dining room sideboard-and perfectly captures the cadence of wonk talk, although the actual words don't make much sense: " Mr. Ambassador, should we attempt an intervention in the Middle East? " " Well, the United States is ready, powerful, and likely to remain so. " A Private Colony Of Mirrors 's out of the shower, dressed, and headed to the kitchen. " Speaking of , " my mother says, " and speaking of jobs, have you heard back from the job developer? " At 's annual individual plan meeting two months earlier, the group consisting of , Joan, me, 's residential coordinator, his vocational coordinator, and an independent advocate) had decided that an opening at a local big-box store would be a good possibility for . Once I'd gotten the official aperwork, I'd followed up, to be sure that something was actually done to see that the job was still there and if was a good fit. He'd had a job like this one everal years back-and done brilliantly, promoted from working in the storeroom to working on the shop floor with customers-but the place had closed. I shake my head. " I started with the vocational director, she referred me to the job developer, I left a message, I sent an e-mail, and I haven't heard anything ack, " I say. " It's been a week since I e-mailed. I was planning to call again Monday. " " Do you think we should go out there and meet with them? " Mom asks. Then we hear trouble in the kitchen. I head in the direction of the noise. 's spilled about half a box of cornflakes. That's unlike him; he knows how to get his breakfast. I grab a broom and sweep up while my brother stands at the sink gulping down a bowl of cereal, as though he can't eat fast enough. " Slow down, Dave, " I say. He puts the bowl in the sink and twiddles his fingers, then rakes his scalp. " You're Wilbur! " he says, which means he's annoyed with me. " I just worry that you're eating your cereal too fast, " I explain. At the dinner able recently, has been eating so rapidly that I've been afraid he'd be sick. I hadn't understood why he was so anxious to finish and leave the table, but if e's been getting up at eleven, no wonder he wants to get to bed before seven-thirty. " The invisible cereal, " he says, speaking, as he often does, in the code of avid, his forehead furrowing. " You're Wilbur! Wilbur the mischievous monkey! " I shrug and empty the dustpan. disappears and a few moments later the sound of a record popular in the 1960s-by an Australian named Rolf -blasts its chords from his room. " Dave, turn that down, " my mother calls to him. " Wilbur! " replies, but the sound fades to a reasonable level. What's eating him? I wonder. Thinking about Joan's whiskey, I go to the cupboard for a glass for me. The shelf is empty. I look out into the dining room. I adn't noticed earlier, but every glass in the house is out, filled with water, linting in the light, crowding the sideboard, a private colony of mirrors, refracting ear-transparent shards of energy back and forth among themselves. I don't know entirely what all this means, but it doesn't feel good. 's ccelerating; he lines up his programs months in advance, the programs that soothe him and that his autism thrives on. He's doing more and more of them, and the vidence of the glasses makes me think that he's dreaming of an infinite and unachievable number of shows. He's trading day for night, living in a universe that includes nly his papers, the shows, his well-worn records. Very little is getting through. And it's not making him happy. He digs the grooves deeper, but he's not getting the satisfaction he needs. It is as though the repetition is a drug, and he's uilding tolerance to it. He wants more and more, and he's getting less and less. It's not that can't connect. A few nights earlier on this visit, our riends Peg and Mike had come to dinner. I invited them in part because they know about and are relaxed, curious, and big-hearted people. They are both political junkies and love the idea of his talk shows; they are charmed that knows he middle name of every congressional representative and senator who has served in his lifetime. In addition, since Peg's mother has developed substantial dementia during the past decade, they are used to fielding the occasional bizarre comment and moving right along. That evening, the conversation went well, and it included . He stayed through dessert, didn't get to bed until almost ten o'clock, and slept until ive the next morning. Needing A Job And Friends It 's clear what needs. He needs a job and friends, and he probably shouldn't be living with other people with autism. He needs regular contact with people whose social skills are superior to his own. He's happier when he's connected. And strong evidence indicates that people like my brother have a ontribution to make in the workplace and as friends. I can say this because society has made progress on successfully integrating people like . When was growing up in the 1950s, people like him were either kept at home or locked up in places where they were treated like infants (if their amilies had money) or like animals (if their families did not have money). stayed t home until his thirties, on what could be called a typical life path for someone n his generation. Then he lived in a facility in the remote countryside, which was state of the art-until society realized that people like were already emote enough. Now he lives on an ordinary street in suburbia, near my mother and me. That's good-but when you look closely, you can see that it's not enough. In this setting, the only nondisabled people knows are his family and the rofessionals and paraprofessionals employed by his organization. So he retreats. 's life pales compared to the opportunities of subsequent generations of autistic children. This is largely because in 1974, when was twenty-six, he federal government enacted the legislation now known as IDEA (the Individuals with Disabilities Education Act), and students with developmental disabilities were guaranteed entry into the public schools. That was thirty-three years ago, and thanks to the law on the one hand and dvocates on the other, each year greater numbers of children with disabilities have entered public school, greater numbers of teachers and administrators have learned how to teach them-and they have discovered that there are many more aptitudes, skills, and abilities inside these students than they had imagined. While the teachers grow to understand how the human brain-in all its astonishing variation-works in our population, people with disabilities grow to understand the " typical " world. Surrounded by children who are interacting " typically, " motivated by the virtually universal urge to conform to peer norms, they learn the rules of " typical " communication. In after-school activities, olunteer programs, and worship, they share experiences with " typical " children-and their presence, in turn, enables inexperienced " typical " kids and adults to get over heir fears and prejudices. Many young citizens with disabilities have been provided with a free and equal education. Society has spent a great deal of money to educate our family embers. The question that remains, however, is: What happens to them-and to our nvestment- after graduation? Getting The Right Job Placements Effective job placements exist. A range of limited resources and several decades of work have created gains that were unimaginable in my brother's youth. Today, disability job developers do the hard work of developing relationships with a wide range of employers: chain video and drug stores, restaurants, offices, hospitals, retail outlets. After job placements, job oaches gradually diminish supports as natural supports from colleagues and coworkers develop. Public awareness grows every time consumers become familiar with an " atypical " employee-and they'll see that employee again, because these employees have often proved to be more reliable workers with longer tenure in jobs. By restructuring jobs, employers free up other employees from tasks such as preparing mailings, making photocopies, unpacking supplies and putting them away, filling copier trays and inserting toner, making coffee, setting up rooms or meetings, recycling, shelving books in libraries. Sometimes people with severe developmental disabilities have outbursts or other behavior that disturbs and worries shoppers and coworkers. But many mployers report benefits to morale that they think balance those risks. They report that these " atypical " employees are sociable, enthusiastic, punctual, and heerful. There's a successful placement at our local grocery store. A man with evelopmental disabilities is one of the guys who bag groceries and, when needed, helps get the groceries out to customers' cars. He's probably in his mid-twenties. His anguage is heavily ritualistic, but he is fully a part of the team. His job has a easure of predictability yet requires flexibility. He had a job coach for a while, and ow his coworkers continue to look out for him, but he does his job and carries his weight. And everybody in the neighborhood knows him and talks with him. The problem is that he's the only person with a job like that in my world, espite the fact that the public school system is producing qualified young graduates every year. Right now, an astonishing 90 percent of all people with evelopmental disabilities are unemployed. These expensive public educations have enabled them to develop " typical " behavior, but the system for integrating them into the workforce is piecemeal and improvisatory. Breakfast At Midnight I know well ; he's my brother. And I think that could have done a job like that, if he'd started early enough. I believe that if he had ore connections to people outside his family and beyond his circle of caretakers, he would be happier and many times more productive. What happened to -and others like him-was a crime. In the past, we isolated people like and then accused them of being incapable of having a normal conversation or appropriate social skills. We didn't let people like him o to public school, and then we drew the conclusion that they couldn't learn how o read or write or count. We didn't make the effort to be friendly to people like y brother, to show them how we like to interact, and then we feared that they ould be likely to do something abrupt, frightening, and dangerous. We didn't give our s opportunities to connect-and then thought it was only a sign of their oddness that they turned to the night, alone in a private world. Now we have educated several generations of these Americans-but we haven't created the policies and systems that enable them to have jobs. It's not their ault that they don't have jobs, it's ours. Let's imagine them as workers, since we've repared them to be workers, and figure out how to open the door so that employment is an assumption, not an exception. My mother has taught me that change happens because of advocacy at the local level and policy work at the top. I'm alling 's job developer, my mom is writing her brochure, but we need more. To start with policy: Right now, people like must deliberately earn below minimum wage, working few hours or at a low wage, never accumulating enough capital to start saving, to keep their income at a low enough level for ligibility for the essential supports of Supplemental Security Income (SSI) and Medicaid. This gigantic disincentive to work prevents them from growing as employees and from building financial assets, both of which they deserve as working adults. In ddition, because this system stunts hours and achievement, agencies are unable to build the critical mass needed for strong workforce programs, and employers and human resource departments never experience the full potential of including this portion of our population as a regular part of the workforce. One way to break his cycle of dependency would be to make it easy for people with cognitive isabilities to have one foot in the public benefits world and another in the private income world, at least for a period while they develop the skills to keep themselves ainfully employed and the savings to ensure their permanent independence. As for systems: We need conversations among business, labor, disability gencies, and human resource professionals in both the private and public sectors. These experts need to imagine a world in which our educated young people with disabilities get jobs, develop financial independence, and live right alongside he rest of us-and then figure out what they have to do to create the systems that an make that happen. They can examine needs, including liability issues, upervision, and job restructuring, especially in public agencies. They can figure out the air way to give hiring preference to people with disabilities in selected job ategories. We have done half the job for the IDEA generation. People with a wide range of developmental disabilities are now publicly educated. The next step is jobs. here is no point in paying for public educations and raising the expectations of mericans like my brother and their families if we don't imagine-and don't put sufficient resources into-integrating our s into public life. Without this next step, they will lose the ground they've gained. Without this next step, they ould all end up eating breakfast at midnight. a r r a t i v e M a t t e r s HEALTH A F FA I R S ~ Vo l u m e 2 6 , Nu m b e r 5 1 4 3 1 DOI 10.1377/hlthaff.26.5.1431 ©2007 Project HOPE-The People-to-People Health oundation, Inc. Judy Karasik (karasik@...) is a writer and consultant. She lives in ilver Spring, land, and Vitolini, Italy. With her brother, cartoonist Karasik, she wrote The Ride Together: A rother and Sister's Memoir of Autism in the Family (Washington Square Press, 2003). 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Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 More reason for all of us to never give up.  Thank you for sharing. Donna Breakfast at Midnight  Going thru old IPADD files today, adding some and purging old out of date files, and came across this old essay written by the adult sister of a 50-some year old with autism. One of the best-written, thought-provoking stories I've ever read. And, of course, it happens to conclude with one of my favorite themes, the importance of community helping to create jobs and meaningful lives for our adults with significant disabilities. I hope I have even half the energy and drive of this 89-year old mother in the story, who never gives up. It's long, but worth a read if you have the time. Breakfast At Midnight Adults with cognitive disabilities should be able to have jobs to lead useful lives- and we know what's needed to make it happen. by Judy Karasik It 's after eleven o 'clock on a Friday night, and my mother (Joan) has beaten me at Scrabble, as usual. As I close up the board, Joan reaches into a drawer, pulls out a piece of paper folded in thirds, and hands it over. " See what you think of it, " she says, taking a sip of late-night whiskey. I see that she's drafted a brochure for families of people with cognitive disabilities- families like us-to encourage them to seek out vocational placements for their disabled family members. My mother's been an advocate, lobbying and working on policy for the past fifty-five years. She's starting to teach me the ropes. As I flatten out the homemade trifold, we hear the sound of rushing water. " What's that? " I ask. " 's taking a shower, " my mother replies. " He's starting his day. " " He's starting his day? " I ask. " He's been going to bed earlier and earlier, " my mother replies. " He gets up around ten-thirty or eleven at night, takes a shower, gets dressed, and stays up playing records, watching TV, and, I believe, occasionally sleeping. " " How noisy is he? " I ask. " It's not too bad, " Joan says. " I had to come downstairs last night and ask him to turn down the sound, but mostly I sleep through it. " My mother is a very hearty eighty-nine-year-old, but she looks tired. A Difficult Visit This has been an especially difficult visit with my brother , who has lived with autism and mental retardation the whole of his fifty-nine years. I wouldn't be playing late-night Scrabble except for the fact that is here, and Mom needs company, under the circumstances. Dave visits Joan once a month, usually for a long weekend, and twice a year for extended periods like this week. He comes to Mom's house from where he lives- it's still hard for me to call it his home-in a townhouse about twenty minutes away with two other men who also have autism. They coexist, each in his own quiet autistic spin. We're lucky to have found a program that includes residential placement; many people in his generation with cognitive disabilities live with family, including more than 700,000 of them whose caretakers are parents age sixty or older. 's residential counselor takes him grocery shopping, and a vocational counselor takes him to a thrift shop where he volunteers twice a week for a few hours. We're working on getting him a job. He has a daily walk, a weekly dance where he sees friends. He doesn't do much else. What really wants to do are his writing and his shows. And that's what he gets to do at Mom's. writes. In his room at our mother's house, maintains a dresser drawer filled with stacks of paper. Sheet after sheet with summaries of television shows, mostly from the 1950s and 1960s. He writes and reads through the stacks and rearranges the paper. also performs television shows. Since we were children, he has performed Superman shows, walking through the house, taking all the parts, with dialogue apparently selected at random, fragments of actual shows. " Gee, Jimmy, do you think the killer's in Mr. White's office? " " What do you think, Miss Lane? " He performs interview shows like Meet the Press. My brother sits at the dinner table with a water glass at his elbow-he keeps track of the total number of shows on a given visit by the count of water glasses on the dining room sideboard-and perfectly captures the cadence of wonk talk, although the actual words don't make much sense: " Mr. Ambassador, should we attempt an intervention in the Middle East? " " Well, the United States is ready, powerful, and likely to remain so. " A Private Colony Of Mirrors 's out of the shower, dressed, and headed to the kitchen. " Speaking of , " my mother says, " and speaking of jobs, have you heard back from the job developer? " At 's annual individual plan meeting two months earlier, the group (consisting of , Joan, me, 's residential coordinator, his vocational coordinator, and an independent advocate) had decided that an opening at a local big-box store would be a good possibility for . Once I'd gotten the official paperwork, I'd followed up, to be sure that something was actually done to see that the job was still there and if was a good fit. He'd had a job like this one several years back-and done brilliantly, promoted from working in the storeroom to working on the shop floor with customers-but the place had closed. I shake my head. " I started with the vocational director, she referred me to the job developer, I left a message, I sent an e-mail, and I haven't heard anything back, " I say. " It's been a week since I e-mailed. I was planning to call again Monday. " " Do you think we should go out there and meet with them? " Mom asks. Then we hear trouble in the kitchen. I head in the direction of the noise. 's spilled about half a box of cornflakes. That's unlike him; he knows how to get his breakfast. I grab a broom and sweep up while my brother stands at the sink gulping down a bowl of cereal, as though he can't eat fast enough. " Slow down, Dave, " I say. He puts the bowl in the sink and twiddles his fingers, then rakes his scalp. " You're Wilbur! " he says, which means he's annoyed with me. " I just worry that you're eating your cereal too fast, " I explain. At the dinner table recently, has been eating so rapidly that I've been afraid he'd be sick. I hadn't understood why he was so anxious to finish and leave the table, but if he's been getting up at eleven, no wonder he wants to get to bed before seven-thirty. " The invisible cereal, " he says, speaking, as he often does, in the code of , his forehead furrowing. " You're Wilbur! Wilbur the mischievous monkey! " I shrug and empty the dustpan. disappears and a few moments later the sound of a record popular in the 1960s-by an Australian named Rolf -blasts its chords from his room. " Dave, turn that down, " my mother calls to him. " Wilbur! " replies, but the sound fades to a reasonable level. What's eating him? I wonder. Thinking about Joan's whiskey, I go to the cupboard for a glass for me. The shelf is empty. I look out into the dining room. I hadn't noticed earlier, but every glass in the house is out, filled with water, glinting in the light, crowding the sideboard, a private colony of mirrors, refracting near-transparent shards of energy back and forth among themselves. I don't know entirely what all this means, but it doesn't feel good. 's accelerating; he lines up his programs months in advance, the programs that soothe him and that his autism thrives on. He's doing more and more of them, and the evidence of the glasses makes me think that he's dreaming of an infinite and unachievable number of shows. He's trading day for night, living in a universe that includes only his papers, the shows, his well-worn records. Very little is getting through. And it's not making him happy. He digs the grooves deeper, but he's not getting the satisfaction he needs. It is as though the repetition is a drug, and he's building tolerance to it. He wants more and more, and he's getting less and less. It's not that can't connect. A few nights earlier on this visit, our friends Peg and Mike had come to dinner. I invited them in part because they know about and are relaxed, curious, and big-hearted people. They are both political junkies and love the idea of his talk shows; they are charmed that knows the middle name of every congressional representative and senator who has served in his lifetime. In addition, since Peg's mother has developed substantial dementia during the past decade, they are used to fielding the occasional bizarre comment and moving right along. That evening, the conversation went well, and it included . He stayed through dessert, didn't get to bed until almost ten o'clock, and slept until five the next morning. Needing A Job And Friends It 's clear what needs. He needs a job and friends, and he probably shouldn't be living with other people with autism. He needs regular contact with people whose social skills are superior to his own. He's happier when he's connected. And strong evidence indicates that people like my brother have a contribution to make in the workplace and as friends. I can say this because society has made progress on successfully integrating people like . When was growing up in the 1950s, people like him were either kept at home or locked up in places where they were treated like infants (if their families had money) or like animals (if their families did not have money). stayed at home until his thirties, on what could be called a typical life path for someone in his generation. Then he lived in a facility in the remote countryside, which was state of the art-until society realized that people like were already remote enough. Now he lives on an ordinary street in suburbia, near my mother and me. That's good-but when you look closely, you can see that it's not enough. In this setting, the only nondisabled people knows are his family and the professionals and paraprofessionals employed by his organization. So he retreats. 's life pales compared to the opportunities of subsequent generations of autistic children. This is largely because in 1974, when was twenty-six, the federal government enacted the legislation now known as IDEA (the Individuals with Disabilities Education Act), and students with developmental disabilities were guaranteed entry into the public schools. That was thirty-three years ago, and thanks to the law on the one hand and advocates on the other, each year greater numbers of children with disabilities have entered public school, greater numbers of teachers and administrators have learned how to teach them-and they have discovered that there are many more aptitudes, skills, and abilities inside these students than they had imagined. While the teachers grow to understand how the human brain-in all its astonishing variation-works in our population, people with disabilities grow to understand the " typical " world. Surrounded by children who are interacting " typically, " motivated by the virtually universal urge to conform to peer norms, they learn the rules of " typical " communication. In after-school activities, volunteer programs, and worship, they share experiences with " typical " children-and their presence, in turn, enables inexperienced " typical " kids and adults to get over their fears and prejudices. Many young citizens with disabilities have been provided with a free and equal education. Society has spent a great deal of money to educate our family members. The question that remains, however, is: What happens to them-and to our investment- after graduation? Getting The Right Job Placements Effective job placements exist. A range of limited resources and several decades of work have created gains that were unimaginable in my brother's youth. Today, disability job developers do the hard work of developing relationships with a wide range of employers: chain video and drug stores, restaurants, offices, hospitals, retail outlets. After job placements, job coaches gradually diminish supports as natural supports from colleagues and coworkers develop. Public awareness grows every time consumers become familiar with an " atypical " employee-and they'll see that employee again, because these employees have often proved to be more reliable workers with longer tenure in jobs. By restructuring jobs, employers free up other employees from tasks such as preparing mailings, making photocopies, unpacking supplies and putting them away, filling copier trays and inserting toner, making coffee, setting up rooms for meetings, recycling, shelving books in libraries. Sometimes people with severe developmental disabilities have outbursts or other behavior that disturbs and worries shoppers and coworkers. But many employers report benefits to morale that they think balance those risks. They report that these " atypical " employees are sociable, enthusiastic, punctual, and cheerful. There's a successful placement at our local grocery store. A man with developmental disabilities is one of the guys who bag groceries and, when needed, helps get the groceries out to customers' cars. He's probably in his mid-twenties. His language is heavily ritualistic, but he is fully a part of the team. His job has a measure of predictability yet requires flexibility. He had a job coach for a while, and now his coworkers continue to look out for him, but he does his job and carries his weight. And everybody in the neighborhood knows him and talks with him. The problem is that he's the only person with a job like that in my world, despite the fact that the public school system is producing qualified young graduates every year. Right now, an astonishing 90 percent of all people with developmental disabilities are unemployed. These expensive public educations have enabled them to develop " typical " behavior, but the system for integrating them into the workforce is piecemeal and improvisatory. Breakfast At Midnight I know well ; he's my brother. And I think that could have done a job like that, if he'd started early enough. I believe that if he had more connections to people outside his family and beyond his circle of caretakers, he would be happier and many times more productive. What happened to -and others like him-was a crime. In the past, we isolated people like and then accused them of being incapable of having a normal conversation or appropriate social skills. We didn't let people like him go to public school, and then we drew the conclusion that they couldn't learn how to read or write or count. We didn't make the effort to be friendly to people like my brother, to show them how we like to interact, and then we feared that they would be likely to do something abrupt, frightening, and dangerous. We didn't give our s opportunities to connect-and then thought it was only a sign of their oddness that they turned to the night, alone in a private world. Now we have educated several generations of these Americans-but we haven't created the policies and systems that enable them to have jobs. It's not their fault that they don't have jobs, it's ours. Let's imagine them as workers, since we've prepared them to be workers, and figure out how to open the door so that employment is an assumption, not an exception. My mother has taught me that change happens because of advocacy at the local level and policy work at the top. I'm calling 's job developer, my mom is writing her brochure, but we need more. To start with policy: Right now, people like must deliberately earn below minimum wage, working few hours or at a low wage, never accumulating enough capital to start saving, to keep their income at a low enough level for eligibility for the essential supports of Supplemental Security Income (SSI) and Medicaid. This gigantic disincentive to work prevents them from growing as employees and from building financial assets, both of which they deserve as working adults. In addition, because this system stunts hours and achievement, agencies are unable to build the critical mass needed for strong workforce programs, and employers and human resource departments never experience the full potential of including this portion of our population as a regular part of the workforce. One way to break this cycle of dependency would be to make it easy for people with cognitive disabilities to have one foot in the public benefits world and another in the private income world, at least for a period while they develop the skills to keep themselves gainfully employed and the savings to ensure their permanent independence. As for systems: We need conversations among business, labor, disability agencies, and human resource professionals in both the private and public sectors. These experts need to imagine a world in which our educated young people with disabilities get jobs, develop financial independence, and live right alongside the rest of us-and then figure out what they have to do to create the systems that can make that happen. They can examine needs, including liability issues, supervision, and job restructuring, especially in public agencies. They can figure out the fair way to give hiring preference to people with disabilities in selected job categories. We have done half the job for the IDEA generation. People with a wide range of developmental disabilities are now publicly educated. The next step is jobs. There is no point in paying for public educations and raising the expectations of Americans like my brother and their families if we don't imagine-and don't put sufficient resources into-integrating our s into public life. Without this next step, they will lose the ground they've gained. Without this next step, they could all end up eating breakfast at midnight. N a r r a t i v e M a t t e r s HEALTH A F FA I R S ~ Vo l u m e 2 6 , Nu m b e r 5 1 4 3 1 DOI 10.1377/hlthaff.26.5.1431 ©2007 Project HOPE-The People-to-People Health Foundation, Inc. Judy Karasik ( karasik@... ) is a writer and consultant. She lives in Silver Spring, land, and Vitolini, Italy. With her brother, cartoonist Karasik, she wrote The Ride Together: A Brother and Sister's Memoir of Autism in the Family (Washington Square Press, 2003). 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Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 I have Judy Karasik and her brother Karasik's book, " The Ride Together " about their family. I see from Amazon that it's now in paperback: http://www.amazon.com/Ride-Together-Brother-Sisters-Memoir/dp/0743423372/ref=sr_\ 1_7?s=books & ie=UTF8 & qid=1287758268 & sr=1-7 It's an interesting book, especially for parents who want to get some thoughts about sibling perspectives. A caution: One of 's residences in young adulthood was very negative, and the family did not realize it for a while. If that aspect of the story would distress you right now, then wait to read the book. -Gail ________________________________ From: Jerue Family <jeruefamily@...> IPADDUnite ; autismcc Sent: Thu, October 21, 2010 10:35:03 AM Subject: Breakfast at Midnight Going thru old IPADD files today, adding some and purging old out of date files, and came across this old essay written by the adult sister of a 50-some year old with autism. One of the best-written, thought-provoking stories I've ever read. And, of course, it happens to conclude with one of my favorite themes, the importance of community helping to create jobs and meaningful lives for our adults with significant disabilities. I hope I have even half the energy and drive of this 89-year old mother in the story, who never gives up. It's long, but worth a read if you have the time. Breakfast At Midnight Adults with cognitive disabilities should be able to have jobs to lead useful lives- and we know what's needed to make it happen. by Judy Karasik It 's after eleven o 'clock on a Friday night, and my mother (Joan) has beaten me at Scrabble, as usual. As I close up the board, Joan reaches into a drawer, pulls out a piece of paper folded in thirds, and hands it over. " See what you think of it, " she says, taking a sip of late-night whiskey. I see that she's drafted a brochure for families of people with cognitive disabilities- families like us-to encourage them to seek out vocational placements for their disabled family members. My mother's been an advocate, lobbying and working on policy for the past fifty-five years. She's starting to teach me the ropes. As I flatten out the homemade trifold, we hear the sound of rushing water. " What's that? " I ask. " 's taking a shower, " my mother replies. " He's starting his day. " " He's starting his day? " I ask. " He's been going to bed earlier and earlier, " my mother replies. " He gets up around ten-thirty or eleven at night, takes a shower, gets dressed, and stays up playing records, watching TV, and, I believe, occasionally sleeping. " " How noisy is he? " I ask. " It's not too bad, " Joan says. " I had to come downstairs last night and ask him to turn down the sound, but mostly I sleep through it. " My mother is a very hearty eighty-nine-year-old, but she looks tired. A Difficult Visit This has been an especially difficult visit with my brother , who has lived with autism and mental retardation the whole of his fifty-nine years. I wouldn't be playing late-night Scrabble except for the fact that is here, and Mom needs company, under the circumstances. Dave visits Joan once a month, usually for a long weekend, and twice a year for extended periods like this week. He comes to Mom's house from where he lives- it's still hard for me to call it his home-in a townhouse about twenty minutes away with two other men who also have autism. They coexist, each in his own quiet autistic spin. We're lucky to have found a program that includes residential placement; many people in his generation with cognitive disabilities live with family, including more than 700,000 of them whose caretakers are parents age sixty or older. 's residential counselor takes him grocery shopping, and a vocational counselor takes him to a thrift shop where he volunteers twice a week for a few hours. We're working on getting him a job. He has a daily walk, a weekly dance where he sees friends. He doesn't do much else. What really wants to do are his writing and his shows. And that's what he gets to do at Mom's. writes. In his room at our mother's house, maintains a dresser drawer filled with stacks of paper. Sheet after sheet with summaries of television shows, mostly from the 1950s and 1960s. He writes and reads through the stacks and rearranges the paper. also performs television shows. Since we were children, he has performed Superman shows, walking through the house, taking all the parts, with dialogue apparently selected at random, fragments of actual shows. " Gee, Jimmy, do you think the killer's in Mr. White's office? " " What do you think, Miss Lane? " He performs interview shows like Meet the Press. My brother sits at the dinner table with a water glass at his elbow-he keeps track of the total number of shows on a given visit by the count of water glasses on the dining room sideboard-and perfectly captures the cadence of wonk talk, although the actual words don't make much sense: " Mr. Ambassador, should we attempt an intervention in the Middle East? " " Well, the United States is ready, powerful, and likely to remain so. " A Private Colony Of Mirrors 's out of the shower, dressed, and headed to the kitchen. " Speaking of , " my mother says, " and speaking of jobs, have you heard back from the job developer? " At 's annual individual plan meeting two months earlier, the group (consisting of , Joan, me, 's residential coordinator, his vocational coordinator, and an independent advocate) had decided that an opening at a local big-box store would be a good possibility for . Once I'd gotten the official paperwork, I'd followed up, to be sure that something was actually done to see that the job was still there and if was a good fit. He'd had a job like this one several years back-and done brilliantly, promoted from working in the storeroom to working on the shop floor with customers-but the place had closed. I shake my head. " I started with the vocational director, she referred me to the job developer, I left a message, I sent an e-mail, and I haven't heard anything back, " I say. " It's been a week since I e-mailed. I was planning to call again Monday. " " Do you think we should go out there and meet with them? " Mom asks. Then we hear trouble in the kitchen. I head in the direction of the noise. 's spilled about half a box of cornflakes. That's unlike him; he knows how to get his breakfast. I grab a broom and sweep up while my brother stands at the sink gulping down a bowl of cereal, as though he can't eat fast enough. " Slow down, Dave, " I say. He puts the bowl in the sink and twiddles his fingers, then rakes his scalp. " You're Wilbur! " he says, which means he's annoyed with me. " I just worry that you're eating your cereal too fast, " I explain. At the dinner table recently, has been eating so rapidly that I've been afraid he'd be sick. I hadn't understood why he was so anxious to finish and leave the table, but if he's been getting up at eleven, no wonder he wants to get to bed before seven-thirty. " The invisible cereal, " he says, speaking, as he often does, in the code of , his forehead furrowing. " You're Wilbur! Wilbur the mischievous monkey! " I shrug and empty the dustpan. disappears and a few moments later the sound of a record popular in the 1960s-by an Australian named Rolf -blasts its chords from his room. " Dave, turn that down, " my mother calls to him. " Wilbur! " replies, but the sound fades to a reasonable level. What's eating him? I wonder. Thinking about Joan's whiskey, I go to the cupboard for a glass for me. The shelf is empty. I look out into the dining room. I hadn't noticed earlier, but every glass in the house is out, filled with water, glinting in the light, crowding the sideboard, a private colony of mirrors, refracting near-transparent shards of energy back and forth among themselves. I don't know entirely what all this means, but it doesn't feel good. 's accelerating; he lines up his programs months in advance, the programs that soothe him and that his autism thrives on. He's doing more and more of them, and the evidence of the glasses makes me think that he's dreaming of an infinite and unachievable number of shows. He's trading day for night, living in a universe that includes only his papers, the shows, his well-worn records. Very little is getting through. And it's not making him happy. He digs the grooves deeper, but he's not getting the satisfaction he needs. It is as though the repetition is a drug, and he's building tolerance to it. He wants more and more, and he's getting less and less. It's not that can't connect. A few nights earlier on this visit, our friends Peg and Mike had come to dinner. I invited them in part because they know about and are relaxed, curious, and big-hearted people. They are both political junkies and love the idea of his talk shows; they are charmed that knows the middle name of every congressional representative and senator who has served in his lifetime. In addition, since Peg's mother has developed substantial dementia during the past decade, they are used to fielding the occasional bizarre comment and moving right along. That evening, the conversation went well, and it included . He stayed through dessert, didn't get to bed until almost ten o'clock, and slept until five the next morning. Needing A Job And Friends It 's clear what needs. He needs a job and friends, and he probably shouldn't be living with other people with autism. He needs regular contact with people whose social skills are superior to his own. He's happier when he's connected. And strong evidence indicates that people like my brother have a contribution to make in the workplace and as friends. I can say this because society has made progress on successfully integrating people like . When was growing up in the 1950s, people like him were either kept at home or locked up in places where they were treated like infants (if their families had money) or like animals (if their families did not have money). stayed at home until his thirties, on what could be called a typical life path for someone in his generation. Then he lived in a facility in the remote countryside, which was state of the art-until society realized that people like were already remote enough. Now he lives on an ordinary street in suburbia, near my mother and me. That's good-but when you look closely, you can see that it's not enough. In this setting, the only nondisabled people knows are his family and the professionals and paraprofessionals employed by his organization. So he retreats. 's life pales compared to the opportunities of subsequent generations of autistic children. This is largely because in 1974, when was twenty-six, the federal government enacted the legislation now known as IDEA (the Individuals with Disabilities Education Act), and students with developmental disabilities were guaranteed entry into the public schools. That was thirty-three years ago, and thanks to the law on the one hand and advocates on the other, each year greater numbers of children with disabilities have entered public school, greater numbers of teachers and administrators have learned how to teach them-and they have discovered that there are many more aptitudes, skills, and abilities inside these students than they had imagined. While the teachers grow to understand how the human brain-in all its astonishing variation-works in our population, people with disabilities grow to understand the " typical " world. Surrounded by children who are interacting " typically, " motivated by the virtually universal urge to conform to peer norms, they learn the rules of " typical " communication. In after-school activities, volunteer programs, and worship, they share experiences with " typical " children-and their presence, in turn, enables inexperienced " typical " kids and adults to get over their fears and prejudices. Many young citizens with disabilities have been provided with a free and equal education. Society has spent a great deal of money to educate our family members. The question that remains, however, is: What happens to them-and to our investment- after graduation? Getting The Right Job Placements Effective job placements exist. A range of limited resources and several decades of work have created gains that were unimaginable in my brother's youth. Today, disability job developers do the hard work of developing relationships with a wide range of employers: chain video and drug stores, restaurants, offices, hospitals, retail outlets. After job placements, job coaches gradually diminish supports as natural supports from colleagues and coworkers develop. Public awareness grows every time consumers become familiar with an " atypical " employee-and they'll see that employee again, because these employees have often proved to be more reliable workers with longer tenure in jobs. By restructuring jobs, employers free up other employees from tasks such as preparing mailings, making photocopies, unpacking supplies and putting them away, filling copier trays and inserting toner, making coffee, setting up rooms for meetings, recycling, shelving books in libraries. Sometimes people with severe developmental disabilities have outbursts or other behavior that disturbs and worries shoppers and coworkers. But many employers report benefits to morale that they think balance those risks. They report that these " atypical " employees are sociable, enthusiastic, punctual, and cheerful. There's a successful placement at our local grocery store. A man with developmental disabilities is one of the guys who bag groceries and, when needed, helps get the groceries out to customers' cars. He's probably in his mid-twenties. His language is heavily ritualistic, but he is fully a part of the team. His job has a measure of predictability yet requires flexibility. He had a job coach for a while, and now his coworkers continue to look out for him, but he does his job and carries his weight. And everybody in the neighborhood knows him and talks with him. The problem is that he's the only person with a job like that in my world, despite the fact that the public school system is producing qualified young graduates every year. Right now, an astonishing 90 percent of all people with developmental disabilities are unemployed. These expensive public educations have enabled them to develop " typical " behavior, but the system for integrating them into the workforce is piecemeal and improvisatory. Breakfast At Midnight I know well ; he's my brother. And I think that could have done a job like that, if he'd started early enough. I believe that if he had more connections to people outside his family and beyond his circle of caretakers, he would be happier and many times more productive. What happened to -and others like him-was a crime. In the past, we isolated people like and then accused them of being incapable of having a normal conversation or appropriate social skills. We didn't let people like him go to public school, and then we drew the conclusion that they couldn't learn how to read or write or count. We didn't make the effort to be friendly to people like my brother, to show them how we like to interact, and then we feared that they would be likely to do something abrupt, frightening, and dangerous. We didn't give our s opportunities to connect-and then thought it was only a sign of their oddness that they turned to the night, alone in a private world. Now we have educated several generations of these Americans-but we haven't created the policies and systems that enable them to have jobs. It's not their fault that they don't have jobs, it's ours. Let's imagine them as workers, since we've prepared them to be workers, and figure out how to open the door so that employment is an assumption, not an exception. My mother has taught me that change happens because of advocacy at the local level and policy work at the top. I'm calling 's job developer, my mom is writing her brochure, but we need more. To start with policy: Right now, people like must deliberately earn below minimum wage, working few hours or at a low wage, never accumulating enough capital to start saving, to keep their income at a low enough level for eligibility for the essential supports of Supplemental Security Income (SSI) and Medicaid. This gigantic disincentive to work prevents them from growing as employees and from building financial assets, both of which they deserve as working adults. In addition, because this system stunts hours and achievement, agencies are unable to build the critical mass needed for strong workforce programs, and employers and human resource departments never experience the full potential of including this portion of our population as a regular part of the workforce. One way to break this cycle of dependency would be to make it easy for people with cognitive disabilities to have one foot in the public benefits world and another in the private income world, at least for a period while they develop the skills to keep themselves gainfully employed and the savings to ensure their permanent independence. As for systems: We need conversations among business, labor, disability agencies, and human resource professionals in both the private and public sectors. These experts need to imagine a world in which our educated young people with disabilities get jobs, develop financial independence, and live right alongside the rest of us-and then figure out what they have to do to create the systems that can make that happen. They can examine needs, including liability issues, supervision, and job restructuring, especially in public agencies. They can figure out the fair way to give hiring preference to people with disabilities in selected job categories. We have done half the job for the IDEA generation. People with a wide range of developmental disabilities are now publicly educated. The next step is jobs. There is no point in paying for public educations and raising the expectations of Americans like my brother and their families if we don't imagine-and don't put sufficient resources into-integrating our s into public life. Without this next step, they will lose the ground they've gained. Without this next step, they could all end up eating breakfast at midnight. N a r r a t i v e M a t t e r s HEALTH A F FA I R S ~ Vo l u m e 2 6 , Nu m b e r 5 1 4 3 1 DOI 10.1377/hlthaff.26.5.1431 ©2007 Project HOPE-The People-to-People Health Foundation, Inc. Judy Karasik (karasik@...) is a writer and consultant. She lives in Silver Spring, land, and Vitolini, Italy. With her brother, cartoonist Karasik, she wrote The Ride Together: A Brother and Sister's Memoir of Autism in the Family (Washington Square Press, 2003). 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