Am I cheerleading? Am I sugarcoating? I don’t think so, but just to make sure, I will admit the obvious: raising Jamie was more difficult than raising Nick. It remains more difficult to this day, insofar as we are not raising Nick anymore. As I hope this book has made clear, Janet and I worried far more about Jamie’s health, his development, and occasionally his whereabouts than we worried about Nick’s. And there were smaller difficulties along the road. One was Jamie’s fascination with wads of gum people had left under countertops and tables in practically every public place we entered. You could say that the real problem is that people leave their goddamn gum under countertops and tables in practically every public place, and you would be right. But it still required us to carry hand sanitizer for Jamie at all times. Another was his occasionally inappropriate behavior in crowded public spaces. On one trip to New York when he was eighteen, I had to stop him from swinging a glass bottle around a busy midtown street, and when I took him to the culinary mecca that is Katz’s Deli on the Lower East Side, he very maturely ate only half his gargantuan pastrami sandwich, leaving the rest for later—and then got up and pranced to the men’s room, nearly colliding with a waiter laden with a tray of many, many pastrami sandwiches. That time, I took him by the shoulders to stop him in his tracks and hissed, “Be! An! Adult!” No doubt some of the diners in Katz’s that evening thought I was a Bad Dad haranguing his disabled son. But Jamie had to learn that there are some places in which it is not OK to cavort, just as he had had to learn, a few years earlier, that it is not OK to laugh when someone falls down and gets hurt. These are some of the indices of his maturity as a young man: he does not laugh at others’ misfortunes, he is circumspect in public places, and he has weaned himself from his interest in touching other people’s wads of gum. And then there are other difficulties and challenges that, like the story of the day Jamie was sad, will always be Jamie’s private business.
I realize that such incidents and issues can arise with almost any child, and that we are very far indeed from talking about the soul-devouring struggles of a Julia Hollander or an Emily Rapp—or, for that matter, a Marianne Leone, whose brilliant, searing memoir, Jesse: A Mother’s Story, offers an unflinching look at what it is like to be the parent of a child with a seizure disorder, a wonderful child who dies in his sleep at the age of seventeen. No one, I suspect, not even the biggest assholes in the whole wide world of parenting, thinks, “I will terminate this pregnancy if there is a reasonable chance that my child might someday collide with a waiter in Katz’s Deli.” I should add that Jamie’s moments of inappropriate behavior are relatively rare, and that he himself is faintly horrified by children who misbehave egregiously in public. I recall the dinner in a Friendly’s restaurant near Harrisburg in 2005, just after Jamie’s volleyball tournament and his first night away from us, during which he and I watched a toddler crawl all over his family’s table, squealing and wreaking havoc with the meal. Jamie looked at me questioningly: he seemed to be asking, Is this a thing? Can people really do this? To which I replied, “Jamie, believe me, you were never like that. You were such a well-behaved kid in restaurants; you always were.” More recently, one night twenty-two-year-old Jamie announced to us out of the blue that “crying babies piss me off.” (“He was very clearly trying out the phrase,” Janet said as we talked this over that night.) A few days later, when we saw L’Incroyable Voyage des Papillons at Le Musée de la Civilisation in Ottawa, we endured one of those crying babies for the final five or ten minutes of the film. When the family was out of earshot, I asked Jamie, “Did that crying baby piss you off?”
He turned to me with a raised eyebrow as we got on an escalator. “You know it,” he shot back.
Or take the classic parental struggle of trying to get your kid to wear appropriate winter outergear. Once again, we are in the realm of the ordinary, the mundane, the quotidian; we are not in the world of Julia Hollander, Emily Rapp, or Marianne Leone. Me, getting Jamie ready to head out to work one morning: “Jamie, it’s 28 degrees outside—you need to wear your puffy jacket.”
Jamie, blowing me off: “Leather jacket will do.”
Me, sighing, having gone through years of this with both children: “Jamie, the leather jacket will not do. It is freezing outside.”
Jamie: “Michael! It is not freezing.”
Me: “Excuse me? It is literally freezing. It is 28 degrees. You know water freezes at 32.”
Jamie, snorting: “That’s a hoax.”
So much for the lessons of seventh-grade chemistry! Somewhere along the way, Jamie had become a climate change denier, at least with regard to the freezing point of water. But the only notable thing about this exchange, involving a young adult with Down syndrome who has the same resistance to prudence in cold weather as any number of his non-disabled peers, is that it represented Jamie’s first use of the word “hoax.”
There is no question that Jamie is relatively easy to take care of, as people with disabilities go. I have lost track of the number of times I have been told that Jamie is not representative of people with Down syndrome because he is “high-functioning” (a phrase I can’t abide, since it evokes a hierarchy that makes some people with disabilities more “acceptable” than others). But I have never argued or imagined that Jamie is representative of people with Down syndrome. I have insisted only that Jamie is Jamie. In fact, I strongly endorse Shelby Peacha’s suggestion that there is no one quite like him. And yes, he is really quite bright. He has his limitations, but within those limitations, he can astonish. As his mentor Lindsay said, he never ceases to surprise all of us with his abilities. A case in point: On a vacation in Scotland in 2015, Janet, Jamie, and I stopped into a lovely pub in the Highlands town of Stirling. We were hoping for lunch, but the wait was half an hour. Janet clearly wanted to stay and spend a pleasant half hour at the bar; I demurred, saying I just couldn’t manage to play animal hangman for thirty minutes at the bar and then another round at a table. (I was a bit grumpy that day. So was Jamie.) So that’s the “limitation” part: He has his routines, and most of the time, they must be honored. Within that limitation, the animals Jamie would ask us to identify, letter by letter, would include creatures like the lowland anoa, the Sumatran muntjac, and, your favorite and mine, the Indian crested porcupine. That’s the “astonish” part.
So if I were faced with Emily Rapp’s question—I love my son, but would I have him again, knowing what I know, or would I have terminated the pregnancy?—I would answer in a fraction of a heartbeat. I would do it all over again, joyfully. I am grateful for Jamie’s presence in my life, I take pride in his accomplishments, and I enjoy his companionship. I can say the same of Nick, in precisely the same terms—which, for me, settles the question of Jamie’s value as a human being.
I have no regrets about having Jamie; quite the contrary. But at one point in our lives together, I did feel a pang of regret about the way I was raising him. It was at the 2005 conference of the Canadian Down Syndrome Society, and one of the keynote speakers was talking about how and why we need to attend to the “spiritual development” of children and young adults with Down syndrome. One of her examples involved bringing a young man with Down syndrome to the cemetery in which his grandparents were buried, so that he could come to terms with their death.
I caught my breath. Jamie’s maternal grandfather, Bradford Lyon (known to his four grandchildren as “Duke”), had died the previous autumn, and Jamie had watched attentively as Janet grieved through Duke’s final year. He had also comforted his aunt Cynthia as she sobbed through the funeral service. But I had not spoken to Jamie about Duke since his death. I had done what I could to prepare him for the fact that his beloved grandfather, with whom he got on so famously from infancy to tweendom, would no longer be with us. In the seven months between the funeral and the conference, though, I had not brought it up. Jamie very clearly had taken his grandfather’s death hard, and I did not want to make things any harder for him. He and Duke were exceptionally close, as Jamie
’s response to this fifth-grade writing assignment can attest (he composed it with the help of his teachers):
If my parents went on a trip, I would like my grandfather to stay with me. We could go to the movies and eat pizza. We could go out to lots of restaurants. He could take me swimming and we could go shopping. We could go to Lowe’s and buy Christmas gifts. We could go to Target and buy socks and underwear. We could shop at Best Buy and get videos. After we are done eating and shopping, we could go to see the fish at the Hub at Penn State. He could also take me to the playground.
To that point in his life, Jamie had never experienced the death of a family member. Then, too, there is the fact that I do not often speak or think of our “spiritual” development. I do not often speak or think of spiritual anything. I am a devout agnostic, though reasonably literate in Catholic intellectual and religious traditions, and I fear that if I say the word “spiritual” my tongue will cleave to the roof of my mouth.
But this was a form of “spiritual” development I recognized, and I immediately regretted not being more aware of Jamie’s possible needs in this respect. I had told him, quite honestly and accurately, that no one knows what happens after we die: some people believe in a heaven and hell, some people believe in a less punitive afterlife, some people believe we return as other humans or forms of life, some people believe we become part of the universe, and some people believe that there’s nothing after death, that we just die. I had not dared to ask him what he thought and felt about all this.
So at some point during the conference, I asked Jamie what he thought about Duke—and the fact that Duke was no longer with us. He did not want to talk about it.
Fair enough, I thought. I told Jamie he could talk to me about it anytime (just as he could always talk to me about being sad, a potentially related subject), and I left it at that.
Later that summer, he wanted to talk about it. Without warning, without context. We were in the men’s locker room at Welch Pool (and why have so many of our heart-to-heart talks taken place after swimming? Is there something about swimming that is tied to Jamie’s spiritual development?), and as we dried off and put on our clothes, Jamie said, “You know . . . maybe Duke could come back.”
I fought back tears. “Oh, oh, Jamie,” I said. “That’s the hard part. That’s what everyone has so much trouble with. We don’t know what happens after people die, but we do know that the people don’t come back. It really is final, for once and for all. And that is why we have religion, and beliefs about God and the universe—to help us deal with the fact that the people we love die and don’t come back, and that every living creature dies and doesn’t come back. I hope you can understand this. I hope you are not waiting for Duke to come back. He can’t come back, Jamie. I am sorry. I am so, so sorry.”
Jamie waited patiently through this little disquisition on mortality. Today, I like to think of him tapping his foot and whistling, but I know he did no such thing. He was just waiting quietly for his father to stop talking. And when I stopped talking, Jamie put his hand on my shoulder, tilted his head, and gently said, “Michael. I said maybe.”
I’m not sure how I retained my composure, but I had the presence of mind to remember that Jamie and I had just made our way through the scene in Harry Potter and the Half-Blood Prince in which Harry and Dumbledore encounter the Inferi, dead bodies reanimated by dark magic.
“Are you thinking of the Inferi?” I asked. Jamie nodded.
“Oh no, Jamie, that’s not something you would want. You would not want Duke to come back like that.”
“Or like zombies,” Jamie replied, totally getting the point.
“Or like zombies. Yes. Because zombies are just dead bodies with no spirit”—I said the word! And I was not smitten!—“like ghosts are spirits with no bodies. Jamie, we make up stories about ghosts and zombies because we do not know what happens after we die. But you would not want Duke to come back as a zombie.”
“No way,” Jamie agreed.
Suddenly I realized how to revive a cliché—if not a dead body. Duke lives in our memories. “Duke had a very lively spirit, Jamie,” I said. Jamie nodded again. “And you have his spirit too.”
“I do?”
“You do. Duke had a sweet, sweet heart, just like you. He was friendly to everybody, just like you. And he was a total goofball, just like you.”
Jamie laughed. This is, in fact, a completely accurate description of Bradford Lyon.
“And that is why you two loved each other so much. You have the same spirit. So in a way, Duke’s spirit lives in you.”
Jamie straightened up. It was almost as if I had promoted him to colonel. “It does?”
“It does. And of course we will always remember him, and as long as we remember Duke, his spirit is alive in our hearts.”
Jamie nodded emphatically. It was an impromptu sermon in a men’s locker room at a local pool, but it was the best I could do.
On that summer day in 2005, Jamie was asking some of the fundamental questions about what it means to be human. Why do we die? Can we come back? And he was expressing one of the fundamental emotions that make us human—love for one’s goofy, genial grandfather.
It is a truism, among people who love and care for humans with intellectual disabilities, that our interactions with people with intellectual disabilities lead us to startling and valuable perspectives on the meaning of human life. That truism is a truism because it happens to be true. But it has some profound and unsettling corollaries for everything else we think we know. I am going to have to put this bluntly: I have become convinced that societies that incorporate and accommodate people with intellectual and physical disabilities are better than societies that exclude, ostracize, and seek to eliminate people with intellectual and physical disabilities.
I am aware that this belief disqualifies me from membership in the campus Cultural Relativist Club—and I am aware of why cultural relativism exists in the first place. For most of human history, the determination that × society is “better” or “more advanced” than Y society has not taken the form of the belief your society is superior to mine and I seek to emulate it, but, rather, that of my society is superior to yours and that is why I rule over you. It has also been made overwhelmingly by Western societies seeking to justify their domination of the rest of the peoples of the world, though the belief in one’s own racial or ethnic superiority can also be found in the East and any number of areas in between. And the toxicity of this attitude is matched by its persistence, as William Henry demonstrated when he wrote, “It is scarcely the same thing to put a man on the moon as to put a bone in your nose.”
But I am getting old and crotchety, and increasingly impatient with people who spend their lives justifying inequality and oppression, no matter where on the globe they might happen to live. After decades of thinking about the question, I am still failing to see why limitations on the sexual and political freedom of women or gays and lesbians are any less objectionable in one geographical location than in another; nor do I understand why the lives of people with intellectual and physical disabilities should be less valuable at one latitude and longitude than they are at another latitude and longitude.
This is not, you should note, grounds for American triumphalism and chest-thumping. In the twentieth century, the United States was among the very worst offenders against the principle of treating the disabled with respect and dignity. We embraced eugenics wholeheartedly, to the point at which our Supreme Court could craft a rationale for the involuntary sterilization of the so-called “feebleminded.” We created hellish institutions that shocked our colleagues overseas—and eventually shocked us, after a series of exposés and investigations forced us to acknowledge what we were doing. Even today, we have not really come to terms with the atrocity of MIT and Quaker Oats teaming up to feed irradiated oatmeal to children with intellectual disabilities at the Walter E. Fernald State School in Massachusetts. (If you haven’t heard about that experiment until now, that
’s probably because we have still not really come to terms with it. Though in the late 1990s, MIT and Quaker Oats did agree to pay the experiment’s subjects $1.85 million in compensation.) Even today, we have not really come to terms with the killing of Ethan Saylor, the young man with Down syndrome who was wrestled to the ground and asphyxiated by police as he called vainly for his mother. (In fairness, the police were dealing with a hardened criminal: Saylor had tried to remain in a movie theater and watch a film twice without paying for the second showing.) And even today, we are failing to acknowledge how many people harmed or killed by tasers are people with disabilities—sometimes deaf people, who are punished for not complying with police orders they cannot hear.
I am weighing the United States by the same measures I would use with any country—not holding it out as a shining example. And by those measures, a capacious and supple sense of what it is to be human is better than a narrow and partial sense of what it is to be human, and the more participants we as a species can incorporate into the determination of what it means to be human, the greater the chances that we will enhance our collective capacities to recognize each other as humans entitled to human dignity—and the greater the chances that we will devise an adequate understanding of our profound interdependence with the nonhuman world, as well. As Jamie has reminded me time and again throughout his life, most Americans had no idea what people with Down syndrome could achieve until we’d passed and implemented and interpreted and reinterpreted a law entitling them all to a free appropriate public education in the least restrictive environment. With the help of that law, as well as with the help of his teachers and aides and family members and animal companions, Jamie got to the point at which he could meditate on life and death with the rest of us.
Life as Jamie Knows It Page 23