In January 2014, I had occasion to take Jamie to the Shedd Aquarium in Chicago and could not help noticing that they were looking for volunteers. For Jamie, that would amount to a real dream job, pay or no pay. Perhaps the sheltered-workshop aspect of his life is partly my fault, for not arranging our family life in such a way that we could live in a city that has an aquarium. Should we have taken the jobs at the University of Illinois at Chicago after all, subjecting Jamie to an inadequate school system for ten years in the hopes that he could someday be a volunteer at the Shedd? I don’t think so. But when I watch the way he comes alive in aquariums and natural history museums, sometimes turning into a chatty docent before my eyes, I wonder.
I knew that Jamie would not grow up to be a marine biologist. And I know that there are millions of nondisabled Americans out of work or underemployed whose lives are less happy than Jamie’s. For that matter, the set of fully employed people who find their work meaningful, enjoyable, and fulfilling is a subset of all working people, and as the middle class erodes under the pressure of austerity economics, the number of people who can find secure, stable jobs that will see them into old age dwindles steadily. Jamie is not the only young person looking for work, and I don’t imagine that he has a “right” to a job that supersedes everyone else’s needs. But I look sometimes at the things he writes in his legal pads, and I think, isn’t there any place in the economy for a bright, gregarious, effervescent, diligent, conscientious, and punctual young man with intellectual disabilities, a love of animals, and an amazing cataloguing memory and insatiable intellectual curiosity about the world?
In 2014, I wrote an account of Jamie’s search for work, and in May of that year Al Jazeera America published it as an essay, “For Hire: Dedicated Young Man with Down Syndrome.” (The previous section is a revised and updated version of that essay.) The story was reprinted in the Penn State alumni magazine, where it caught the attention of an editor from the Penn State Press, Tony Sanfilippo. Sanfilippo was so struck by the story, and by its accompanying photographic evidence of Jamie’s skill in making lists, that he offered Jamie an interview for a job in cataloguing, information retrieval, and tracking inventory and sales. Somehow I think it is relevant that Tony has two brothers with Down syndrome.
Janet accompanied Jamie to the interview, but first, she prepared him for it by going over some basic data about books: title, author, ISBN number. Titles and authors were things that Jamie knew; the world of ISBN numbers was new to him. But he is a quick study. When Tony Sanfilippo started to explain to Jamie what information he would need to understand the cataloguing job, he started with author and title . . . whereupon Jamie flipped over a book, pointed to the ISBN number, and said, “I know, and ISBN number.” Sanfilippo was pleasantly surprised and proceeded to let Jamie know that some Penn State Press books are highly specialized and very complicated, such as the books in art history and the Renaissance. “I love art history and the Renaissance!” Jamie exclaimed and reeled off the names of six or seven of his favorite Renaissance painters, from Botticelli to Caravaggio.
Jamie got the job. He works every Friday from 9 a.m. to 1 p.m.; I drop him off in the morning, and he usually takes the campus shuttle to my office, arriving just after 1:30. Even though Tony Sanfilippo has since moved to Ohio State University Press (damn!), Jamie is still cataloguing, cutting-and-pasting, and tracking information, two hours on his own and two hours with his job coach. The agency was a bit surprised by this development—apparently they had not considered this line of work for Jamie, ahem—but they are supporting him well. Jamie is very proud of his Penn State Press job and always insists on wearing a dress shirt on Fridays. I call it Uncasual Friday. He knows very well this is competitive employment, not a sheltered-workshop job, and he wants to look and perform his best.
Still, when I contrast Jamie’s school history with his work history (as I cannot help but do), it’s impossible for me not to feel dissatisfied, uneasy. Jamie’s life is immeasurably richer than it would have been fifty or sixty years ago; there is no denying that. Now that we as a society are no longer institutionalizing people with Down syndrome, we have collectively learned something extremely important—not only about Down syndrome, or about ourselves as a society, but about human life in general. Nature and nurture are so deeply intertwined, so interdependent, that even so dramatic and indelible a genetic aberration as trisomy-21 is not simply “in the genes.” To put this another way, in the terms I use when teaching disability studies classes, over the past century, nothing has changed about the chromosomal non-disjunction that produces Down syndrome. The biology is what it was. So what has changed? Social policies. Those social policies now make it possible for Americans with Down syndrome to receive meaningful education and to achieve some degree of social integration with their nondisabled peers. Those social policies have brought people with intellectual disabilities, more generally, out of the shadows and the warehouses and into public life. Those social policies have literally changed human bodies and minds, and expanded our collective sense of human potential.
Medicine, too, has played its part: the advent of open-heart surgery allowed untold numbers of people with Down syndrome to survive neonatal heart defects, and advances in medical care have improved the quality of life (and lengthened the life expectancy) of people with disabilities. No degree of distrust in the “medical model” of disability should induce us to ignore that. But the “social model” of disability studies caught on in academe precisely because disability is not simply a matter of individual bodies and somatic conditions; it is a social relationship, mediated by social customs and social policies.
I doubt whether any endeavors in human life could make this clearer than the realms of education and employment. To take another example from the scholarship in disability studies, mild intellectual disability has not uniformly been considered a disability in all human societies. The ancient Greeks, for instance, were deeply disturbed by congenital malformation, thinking it grounds for infanticide, but do not seem to have cared much about mild intellectual disability. In many pre-industrial societies, people with mild intellectual disabilities served in the workforce without very much fuss. Henri-Jacques Stiker’s monumental A History of Disability makes this case in great detail, though I tend to distance myself from some of Stiker’s rosier depictions of pre-industrial society, which seem to me to come perilously close to the position that 1100 CE constituted the good old days. He has a point, though, insofar as for much of Christian Europe in the Middle Ages, disability was not sharply distinguished from poverty, and Christian charity was the appropriate response to both. Just as you can find radical environmentalists who not only question the costs and benefits of the Industrial Revolution but also romanticize pre-Columbian Native civilizations as living in perfect harmony with nature, so too is there a strain, in Stiker’s thought, of romanticizing the community ethos of Christian Europe (and overlooking the whole tortures-and-crusades aspect of that culture).
Jamie’s struggles with employment leave me of two minds about the world we have created over the past few centuries. It is not too hyperbolic, or too social-constructionist, to say that some people with disabilities were disabled by modernity, insofar as the organization of life and work in modern societies gave them fewer roles in public life than they might have had in some premodern societies. The Industrial Revolution increased the aggregate quality of life for the people of developed countries, but it also maimed millions of workers—men, women, and children—and inaugurated the era of the mental institution and the sciences of population management. The horrors of eugenics flow directly from the ideas of “progress” that spread in the wake of industrialization. At the same time, modernity created new forms of disablement among putatively able-bodied persons: I would not be capable of writing this book without the modern device known as reading glasses, which I have needed since my late forties. Disability is contextual: for most of human history, the slight degeneration in my eyesight would not h
ave mattered to anyone, not even me; only with the advent of the modern device known as “writing,” five thousand years ago or so, and the even more modern invention known as “fine print,” did it become an issue of some importance.
And yet I believe with all my heart that this is the best time in human history for people with Down syndrome. I have no nostalgia for an era in which Jamie might have been able to work alongside his nondisabled peers as a baler of hay or a carrier of water, if he were so lucky as to have survived childhood. But it seems clear to me that whereas the Individuals with Disabilities Education Act has changed the national landscape for people with intellectual disabilities, the Americans with Disabilities Act, though far better known, has been far less successful on that count. That’s not just because courts have read the ADA so narrowly—finding for plaintiffs only on the rarest occasions, looking for any rationale to deny a plaintiff standing to sue—that Congress had to go back and amend the law in 2008. It’s also because in this world we have created, people with intellectual disabilities are incapable of doing a great many jobs, even with all the assistance imaginable.
As for the sheltered workshops: On July 22, 2014, President Obama signed into law the Workforce Innovation and Opportunity Act (WIOA), which went into effect on July 1, 2015. The law will transform the workshops substantially, severely limiting the number of people who can legally be paid a subminimum wage. That sounds great: Who is in favor of the subminimum wage? But the law does not say what will become of people whose intellectual disabilities are significant enough to prevent them from being competitive for competitive employment. Like Jamie, they are doing piecework for a buck and change an hour. Every well-meaning person might object to a wage scale that low, anywhere in the world (including the places in the world where it would constitute a huge raise). But although the new law will strike many people with disabilities from the rolls of subminimum-wage workers, and although it provides that they receive career counseling and job preparation, it does not, because it cannot, say anything about whether employers are going to go along with the plan. So what becomes of people like Jamie, and people less suited for competitive employment than Jamie? “There are exceptions,” notes the online magazine Disability Scoop, “for those who are deemed ineligible for vocational rehabilitation and to allow individuals already earning less than the federal minimum to continue in their jobs.” But it is not clear how those exceptions will play out, state by state, city by city, workshop by workshop, individual by individual. After the state of Vermont closed its sheltered workshops in 2002, it integrated many of the former workshop workers into competitive employment, such that the employment rate of people with developmental disabilities in Vermont is now twice the national average. As Halle Stockton wrote in a 2014 investigative report, “Within three years, about 80 percent of people who’d worked in the last sheltered workshop to close found jobs. Those who didn’t got other services based in the community.” Here’s hoping Vermont’s success can be the model for the other 49 states.
On paper, here’s how it is supposed to work: section 511 of the new law, “Limitations on Use of Subminimum Wage,” affects employers who hold “special wage” certificates under section 14 (c) of the Fair Labor Standards Act (the provision that exempts them from minimum-wage laws). As the Arc puts it in their summary of WOIA:
Entities with a valid 14 (c) certificate may not continue to compensate employees at a subminimum wage unless the individual:
(1) Is provided career counseling and information by the designated state agency which are delivered in a manner facilitating independent decision making and informed choice;
(2) Is informed by the employer of self-advocacy, self-determination, and peer mentoring training opportunities available in the individuals’ geographic area; and
(3) These options are presented every six months for the first year of employment in a subminimum wage position and then annually thereafter.
So will Jamie and his group be grandfathered in as subminimum-wage workers and given counseling and training and self-advocacy opportunities that all our local employers are free to ignore? Or will Pennsylvania become gradually Vermontized? It’s impossible to say. But we have been put on notice that much of Skills of Central Pennsylvania might be converted to an “activity center” as a small number of Skills employees are transitioned to minimum-wage jobs.
In November 2015, Skills held an informational session with local families. There was pizza and soda and PowerPoint, and the vibe in the room ran from cautiously optimistic to anxiously suspicious to plaintively bewildered. A substantial number of parents insisted that they like the sheltered-workshop system just as it is, especially the “sheltered” part; they didn’t want their children out in the workaday world of competitive employment where they might be subject to bullying, taunting, and derision. Some of them had had bad experiences with employers and unsympathetic coworkers; one mother complained that her son’s previous workplace had included people who smoked and cursed. Are these parents being overprotective, paternalistic to the point of infantilizing their adult children? Possibly. They might also be prudent. At one point, Janet asked why the Skills employees should be doing subminimum-wage piecework labor at all; why not convert the facility into something like an arts center?
The Workforce Opportunity and Innovation Act has two objectives. One is to cut down on the use of subminimum-wage work. That is unobjectionable. The minimum wage produces a yearly income of $14,500, and it is hard to see why any American worker should be allowed to earn less than that. The other objective is to integrate people with intellectual disabilities into the community, to get them out of the workshops and into the wider world. That has been a goal of the disability rights movement from the outset—a goal, it turns out, that some parents of adults with intellectual disabilities do not share. It is a conundrum. It is true that much of the wider world does not welcome adults with intellectual disabilities, and yet how can we try to destigmatize intellectual disability unless adults with intellectual disabilities are seen as, and treated as, ordinary people—albeit ordinary people who need a bit more help? How might it be possible to combine publicly funded programs—not only counseling but the provision of job coaches and supervisors—with financial incentives for private businesses to hire and integrate people with intellectual disabilities? As a society, in our treatment of people with intellectual disability, we have survived the long dark era of eugenics and institutionalization—though not without heart-wrenching suffering and misery. We have created an era of inclusive education. But we still do not seem to know what inclusive employment would look like, or how to go about achieving it. For people with intellectual disabilities, it is the next great civil rights struggle.
The Meaning of Life
One thing in my world has changed radically over the past twenty years, quite apart from Jamie growing up to be big. When I published Life as We Know It, there was no such thing as “disability studies” in the humanities. Lennard Davis had published his groundbreaking book, Enforcing Normalcy, in 1995; Rosemarie Garland-Thompson published the collection Freakery: Cultural Spectacles of the Extraordinary Body in 1996; David Mitchell and Sharon Snyder published the collection The Body and Physical Difference in 1997; Simi Linton published Claiming Disability in 1998. These are generally regarded as some of the first major works in disability studies, and rightly so. But at the time I was writing my book, I had no idea that I might be contributing to a new academic field. I wanted to write something that would be more than just an account of Jamie’s life, something that explored the political, cultural, and philosophical implications of Down syndrome and intellectual disability. But I never thought of it as a book in “disability studies,” because disability studies didn’t exist.
I was also trying, in my way, to help make the world a more welcoming place for my son and everyone like him. Unsurprisingly, some readers responded to that aspect of the book by suggesting that I was “cheerleading,” painting a mostl
y shiny happy picture of Jamie’s early life. (For my part, when I go back and look at that book now, I am struck by how much sorrow and worry it testifies to.) And I suppose that people who cannot imagine the value and delight in raising a child like Jamie will inevitably think of this book as more cheerleading, this time laced with accounts of literal cheering for his accomplishments at school and his victories in Special Olympics.
The odd thing is that despite the rise of disability studies as an academic discipline, a discipline to which I now claim some allegiance and to which I hope I have made a substantial contribution in my previous book, The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read, I suspect that I am more likely to find people who cannot imagine the value and delight in raising a child like Jamie in academe than outside of it. In one way that is not terribly odd, since academe values intelligence (or claims to) above everything else. In the humanities, Licia Carlson writes, intellectual disability has often been treated as “the philosopher’s nightmare”: “Rather than promoting ideals of assimilation and normalization, many who bring the intellectually disabled into the philosophical fold mark this group out according to its departure from the normal and highlight its profound otherness, its radical alterity.” We are about to see just how right Carlson is. But in another way this phenomenon seems quite strange: in American popular culture, it seems to me, the public image of people with Down syndrome is pretty good, even if their representation sometimes takes the icky form known to theorists and activists as “inspiration porn.” For the most part, when someone with Down syndrome is the sibling of an athlete or a celebrity, or when someone with Down syndrome accomplishes something substantial, the press coverage goes into heartwarming mode, and we as a society give ourselves a collective pat on the back for being inclusive, caring, and sensitive to difference and diversity. Whereas in the subfield of philosophy known as bioethics, things are decidedly bleaker. Which is why, for a couple of years, I would offer an academic lecture entitled “Bioethics: Much Too Important to Be Left to Bioethicists.”
Life as Jamie Knows It Page 20