And I got to this point with the help of two feminist philosophers. One is Nancy Fraser, whose theory of democracy, derived in part from the German philosopher Jürgen Habermas, involves the idea of “participatory parity” and the imperative that a democratic state should actively foster the abilities of its citizens to participate in the life of the polity as equals. Fraser’s work does not address disability, and in one way, it shows: she writes as if the promise of democracy entails the promise to enhance participatory parity among citizens, which it does, and she writes as if we know what “participatory parity” itself means, which we don’t. This is why the promise of disability rights is so open-ended. Jamie has his place at the table, as I had hoped at the end of Life as We Know It, but who knows what will happen when everybody gets a place at the table?
The idea of participatory parity does double duty in Fraser’s work, in the sense that it names both the state we would like to achieve and the device by which we can gauge whether we’re getting there. For in order to maintain a meaningful democracy in which all citizens participate as legal and moral equals, the state needs to judge whether its policies enhance equal participation in democratic processes. Yet at the same time, the state needs to enhance equal participation among its citizens simply in order to determine what its democratic processes will be. This is not a theoretical quibble. On the contrary, the point is central to the practical workings of any democratic society. One of the tasks required of egalitarians is to extend the promise of democracy to previously excluded individuals and groups, some of whom might have a substantially different understanding of participatory parity than that held by previously dominant groups and individuals.
Put it this way: Imagine a building in which political philosophers are debating the value and the purpose of participatory parity over against forms of authoritarianism, monarchy, oligarchy, plutocracy, or theocracy. Now imagine that this building has no access ramps, no Braille or large-print publications, no American Sign Language interpreters, no elevators, no special-needs paraprofessionals, no in-class aides. That may sound horribly self-contradictory, but it’s a reasonably accurate picture of what contemporary debate over the meaning of democracy actually looks like. Only when we have fostered equal participation in debates over the ends and means of democracy can we have a truly participatory debate over what “participatory parity” itself means. And the meaning of participatory parity, in turn, sets the terms for more specific debates about the varieties of human embodiment. These include debates about prenatal screening, genetic discrimination, inclusive education, stem-cell research, euthanasia—and, with regard to physical access, ramps, curb cuts, kneeling buses, and widened doorways.
The other philosopher I’m relying on is Eva Feder Kittay, who has written so compellingly about her daughter Sesha—and about what her life with Sesha has taught her about life and about the practice of philosophy. Sesha is not (cough) “high functioning.” She is nonverbal and needs assistance with most things, including eating. And precisely because she needs assistance, she has taught her mother that we are all interdependent to one degree or another (especially at the beginnings and ends of our lives), and that the ideals of independence and autonomy, essential as they have been for both liberal social theory and the disability rights movement, inevitably set performance criteria for being human—performance criteria that some humans will not meet.
I first met Sesha in 2008, when Eva and her husband, Jeffrey, invited Jamie and me to spend a weekend at their house in upstate New York. It struck me vividly, at the time, that I was hanging out with Sesha and observing her keen enjoyment of her surroundings, her companions, and the music of her favorite composers (Bach and Beethoven) just a few weeks before Eva and I would speak at a conference she had organized, “Cognitive Disability and Its Challenge to Moral Philosophy.” (Jamie still asks about Sesha, and he remembers who her favorite composers are.) Utilitarian philosophers Peter Singer and Jeff McMahan had also agreed to speak at that conference, where they would explain to all and sundry why people like Sesha do not meet their performance criteria for being human. Eva had put together the conference, she told me, as the result of her years of frustration over philosophy as an academic discipline and its inattention to, or outright revulsion at, people with intellectual disabilities. She had considered leaving the field altogether but then, inspired partly by Sesha, decided to stay and fight.
I discuss Singer and McMahan briefly in my 2015 book, The Humanities, Higher Education, and Academic Freedom: Three Necessary Arguments (written with Jennifer Ruth), in which I take issue with their conviction that a creature’s moral worth is directly proportional to (their estimates of) that creature’s cognitive capacity. I won’t reprise that argument in full here, but I will cite again the passage of Singer’s talk I found most ludicrous:
If it happens that one of you is an alien who has cleverly disguised yourself in a human shape, but you are capable of understanding this argument, I am talking to you just as I am talking to members of my own species. In important respects, I have much more in common with you than I do with someone who is of my species but, because he or she is profoundly mentally retarded, has no capacity for verbal communication with me at all.
I dutifully pointed out, in that book, that Singer could be having these pleasant interspecies-bonding thoughts about creatures who, like the aliens in the Twilight Zone episode “To Serve Man,” do not share Singer’s aversion to meat eating and cannot wait to cook up a juicy batch of Singerburgers. But I did not tell the story of how, listening to Singer’s talk in the spillover room while Jamie played a Harry Potter game on my computer, I burst into laughter when Singer said this. “What’s so funny, Michael?” asked Jamie. “It’s hard to explain,” I replied, “but this man just said something very silly. He thinks he has more in common with some space aliens than with some of his fellow human beings.” “That is weird,” Jamie agreed. By the time the conference speakers gathered for our group photo late that afternoon, I was ready to address Singer’s argument, however informally. I announced to the gathering that I am in fact an alien who has cleverly disguised himself in human shape (“That explains a great deal,” said someone), that I was capable of understanding Singer’s lecture earlier in the day, and that I saw no reason whatsoever to believe I had anything important in common with him.
I try to carry this kind of thing lightly, but of course it is no laughing matter that one of the world’s foremost philosophers, a passionate defender of animal rights and blistering critic of economic inequality, is so cavalier about the lives of some of the most vulnerable humans on the planet—and so woefully, willfully underinformed about the capabilities of people with intellectual disabilities.
As for McMahan, his paper the following day made much of the fact that there seems to be an enormous and obvious difference between killing a human being and killing a squirrel: clearly, therefore, there must be some correlation between cognitive capacity and moral standing. But this argument proves nothing, as I replied in my contribution to the question-and-answer period. Not very long ago in human history, there seemed to be an enormous and obvious difference between killing a nobleman and killing a slave. It is entirely possible that, in the future, we will shudder in horror at the killing of a squirrel. And why, if we should want to grant some rights and some sense of dignity to certain sentient animals, should we do so at the expense of any humans? Every attempt to boot some people out of the human family has been disastrous, and with regard to people with intellectual disabilities, those attempts involve brutal mistreatment on a massive scale within living memory. McMahan and Singer are right to argue that we have undervalued the lives of many animals. When they argue that we have somehow overvalued the lives of people with intellectual disabilities, they are as wrong as it is possible for a person to be.
And so, when I think about life and death and everything in between, I think about Peter Singer and Jeff McMahan on the one hand, and Jamie Bérubé and Sesha Ki
ttay on the other. I think of Jonathan Glover and Rayna Rapp and Eva Kittay and Tom Shakespeare and Emily Rapp and Nancy Fraser and Marianne Leone. I think of everyone I know, everyone I have ever met. I know that Jamie and Sesha are not able to express themselves as eloquently as most people, but I do not think that is important. I think, instead, that maybe it would be a good idea if we humans stopped trying to come up with reasons not to treat each other as equals. I think that maybe it would be a good idea if we tried instead to treat people with intellectual disabilities, mild to severe, as if they are people who matter, people worthy of attention, support, and care. And I think maybe it would be a good idea to try to create societies, here, there, and everywhere, in which all humans, no matter what their individual characteristics, can flourish to the greatest extent possible. You never know. We might just find out that people with intellectual disabilities have something to teach their fellow human beings about being humans.
I know it sounds unlikely. It might even sound impossible. But I said maybe.
Afterword
How this book was written
This book was mostly written on a laptop manufactured by Asus, typed furiously by someone with good typing skills, but that’s not what I want to explain. I want to explain that I wasn’t sitting alone in a garret, typing away while Janet and/or a series of paid companions took care of Jamie. And it is not as if I have spent my life with Jamie with a tape recorder in one hand, taking notes from 1997 to 2016 on his every milestone and significant life event. For many of the details of his teen years, I have drawn on a variety of things I wrote at the time—most of them on my now-defunct blog, which was, among other things, a running record of his development, some of them short pieces for newspapers and journals (the Norfolk Virginian-Pilot, the Globe and Mail, the Times Higher Education Supplement, Dissent, Literature and Medicine). The account of Jamie’s search for work was published in Al Jazeera America and substantially revised for inclusion here; the pleasant rant on American health care first appeared in Salon. I have also included and revised two posts from the academic group blog Crooked Timber.
There is, I know, something absurd about taking time away from caring for your child in order to write about your child. And I admit that, at times, I was writing and revising this book while Jamie was at work or while he amused himself with videos and YouTube in his basement lair. His basement lair is something I have to regulate, I have found, because left to his own devices, Jamie will cover the floor with dozens of DVDs, none of which have any clear relation to the DVD cases also strewn around the floor. After one particularly arduous cleanup, I told Jamie that he could have five DVDs out at any one time—and that I did not build him all his DVD-storage units (courtesy of Target, “home storage” cheap furniture department) only to have to spend hours on my hands and knees matching stray DVDs on the floor to stray DVD cases.
As for Janet’s role in all this, those of you who have read Life as We Know It will probably notice that she is somewhat less present in this book than in that one. That has everything to do with the trajectory of Jamie’s life and with the areas of competence and expertise Janet and I bring to the task of being Jamie’s parents. Janet is a former intensive care nurse whose knowledge of medicine and health care remains razor-sharp; I defer to her in all matters medical. That knowledge was of critical importance when Jamie was young, and it undergirded the major decisions we made back then—including the most important decisions I mentioned in Life as We Know It: not to subject Jamie to abdominal surgery in order to feed him with a gastrostomy tube, and not to fix his torticollis and head tilt by cutting the muscles in his neck and resewing them. (I have never had a moment of doubt as to whether we—and by “we” I mean “Janet”—made the correct decision in either case.)
Janet spent innumerable Saturday mornings helping our teenaged Jamie to paint and innumerable hours helping him to do food prep for things like pizza, casseroles, and fish tacos. But when it comes to things like special-needs trusts and powers of attorney and navigation of the legal-social support system and Special Olympics and employment, I have usually taken the lead. More important, on a day-to-day basis, is the fact that once Jamie entered puberty, many aspects of his life became my domain. At one point in the early 2000s, Janet told me, “I’m not teaching him how to shower and shampoo. You’re doing that.” I had no quarrel with that, and spent a few months in early 2003 helping a reluctant and bewildered tween shower and shampoo after a Saturday morning in the pool. (We quickly solved the problem of soap-and-shampoo-in-the-eyes by keeping Jamie’s swimming goggles on during the shower.) By the age of fourteen, Jamie was capable of showering and washing his hair on his own, thanks to his father’s expert instruction. Though I often have to remind him not to cut corners on hygiene (he is, in that respect, very much a teenager, even in his mid-twenties), and I regret his preference for Axe body products (he is, in that respect, very much like every American male teenager and twentysomething).
And Janet does not travel alone with Jamie, because of the awkward business of sharing a hotel room with him. That is why all the travel stories here are episodes in what Jamie and I have come to call “The Jamie and Michael Show.” To get the full effect of that, you have to sing it to the tune of The Simpsons’ “Itchy and Scratchy Show,” as we do. This is but one of many ways Janet and I have tried to devise some work/life balance as an academic couple. Whenever I can take Jamie with me on a speaking gig, I do. (I pay his travel costs, of course; I do not ask my hosts to cover him.)
But emotionally, psychologically, Janet is and always has been our rock. We have embarked on this journey together fearlessly ever since she uttered those decisive words in the birthing room, upon hearing that Jamie might have Down syndrome: We can handle this. That remains the single most important utterance in my life, guiding me for a quarter century through territories known and unknown.
When I talked with Jamie about my plans for the book, I told him that this book, unlike Life as We Know It, would be mostly about his experiences growing up—and I told him that I hoped he would be able to help me write it. I closed Life as We Know It with the hope that Jamie would become his own advocate, his own author, his own best representative. In many ways, my hope for him has been fulfilled: He is indeed his own best representative, a goodwill ambassador from the World of Jamie, spreading cheer to everyone he meets. He is eager to become an advocate, and he talks excitedly about being “on panels” and maybe even “on the radio” when this book is published. (I have cautioned him that he will need to speak slowly and clearly if he is on the radio. And I will try to remember to do so, as well.) But he has not become his own author in the sense that he writes his own narratives. And I recall the theologian Stanley Hauerwas reminding me that in a Christian sense, none of us can be our own author. I invited Jamie to write down a story or two, but it’s just not how he’s wired. He did, however, consult with me extensively throughout the composition of the book, shoring up lapses in my memory, offering key details, and, at one point, editing. In my account of Jamie’s decision to jump off the diving board in 2006, I wrote that he quietly muttered, “I will do it by myself,” that day in the Penn State Natatorium. When I read that passage to him, he objected. “I was not muttering,” he said.
“Oh, OK,” I replied, surprised. “Do you think that ‘muttering’ makes you sound too angry or something?”
“No,” Jamie said, “I was not muttering, that’s all.”
I was perfectly willing to concede the point, and besides, he knows what he was about better than I do. I suspected that he wanted a verb that conveyed the decisiveness behind his decision, rather than a verb that suggested he was like unto a grumpy old man. So I asked: “How about ‘declaring’? Would that work?”
“‘Declaring’ is good,” Jamie agreed, and lo, “declaring” it is.
He has also made dozens of suggestions for material—“Sea lions in Omaha! That has to be in the book!”—and with very few exceptions, I have taken them.
And finally, in lieu of a narrative episode from “The Jamie and Michael Show,” I asked Jamie to write a list of some of the things he likes. He presented it to me one evening, and I told him I would copy it down letter for letter (keeping his erratic spelling and all-caps delivery intact) and explain each item as best I can. So, without further ado, we close with a classic Jamie List. Here are a few of his favorite things:
THE WOODY PARTY
This was a game that occupied us for many an hour on winter weekends when there wasn’t much else to do in central Pennsylvania. Not long after we moved here, Jamie renamed all his stuffed animals, as I have mentioned. The Woody Parties were the events at which the animals met on Jamie’s bed and were introduced to each other—by Woody of Toy Story, the only one of Jamie’s creatures who retained his own name (by contrast, Buzz Lightyear was renamed Nick Hamilton). Woody would welcome the animals to the party one by one, introducing each of them to the already assembled guests—Tony Falion, Leon Reel, Jaws of a Tiger, Lauren Morrow, Zokie, and so on and so on until the bed was hosting somewhere between fifty and sixty guests. How did I remember all the names in order to do the introductions necessary for a Woody Party? The same way you get to Carnegie Hall: practice, practice, practice.
BEEF JERKEY
I think this is self-explanatory. Jamie did correct me, however, on one detail in the story of Jamie and His Retainers: I thought his reward was beef jerky, but he assured me it was Slim Jims, and he insisted that I fix the chapter to get this right. So I have.
VINILA ICE CREAM
This is the only dessert Jamie likes. He does like one other sweet thing—chocolate milk. But the world of cupcakes and Ho-Hos and Ding Dongs and banana splits is simply alien to him. His “birthday cakes,” growing up, were pizzas. (We did serve cake to the other kids.)
Life as Jamie Knows It Page 24