Michael Bérubé - American Airspace

Another subject altogether

This blog doesn’t usually do memorials. OK, yes, I wrote a long piece in August about the deaths of Janet’s father and her best friend’s husband, but you know what I mean—I didn’t post anything on Coretta Scott King, for example, even though her passing was a milestone (and, unfortunately, the occasion for yet more wingnuttery having to do with black folk “politicizing” her funeral, in contrast with the well-behaved white people who refrained from politicizing the death of Ronald Reagan).

But last night when I learned of the death of Dana Reeve, I was stunned. Not by surprise—I knew she had lung cancer—but by a sense that we’d lost someone of rare grace. I know, I have a soft spot for caregivers of people with disabilities. Sure. And for people who are friends of Mark Messier. (My god, it was only six weeks ago that she sang at Madison Square Garden in Messier’s honor.) But I think it wasn’t just that she was so powerful as Christopher Reeve’s partner and advocate—it was also that she and her husband dealt with more than most people know about. Yes, there was the spinal cord injury itself, which is quite enough. But for a while back there in the 1990s, Christopher Reeve became, in some circles, the example of How Not to Talk About Disability . . . because (so the argument went) he was all about cure, and not about care. All about the remedicalization of disability, and not about the provision of services for long-term maintenance. That was the argument, anyway. If you didn’t have a connection to one or another sector of the “disability community” back then, you may not have seen the point of this critique: after all, who’s in favor of spinal cord injuries? What’s wrong with curing a disease, or remediating a syndrome, or alleviating an injury? Isn’t it a general species good that smallpox and polio and tuberculosis no longer sweep through the population? There’s no such thing as a Tay-Sachs Preservation Society, right? Well, right, but when you start talking too aggressively about “curing” or “eradicating” certain disabilities, some of us get kinda antsy. Like those of us who are deaf, for example, or those of us who know people with Down syndrome. We don’t see the “curing” or “eradicating” of these things as a general, unqualified species good; we tend to see them as perfectly acceptable forms of intraspecies diversity. (I don’t even want to get into that new ABC show, “Miracle Workers.” All I’ll say is what I’ve said before, namely, disability deranges every political position on the spectrum. Well, no, I’ll say a little more than that. On the one hand, this is just creepy beyond belief: it’s the future of American health care, in which your only chance of medical treatment depends on your participation in a reality TV show. And it’s cure-as-overcoming-as-salvation: we might as well call it “Touched by a Medical Angel.” On the other hand, who’s against the innovative use of stem-cell research? You know who. And who among us truly wants to deny these people their desires? Not me.) We thought that Nuveen ad in the 2000 Super Bowl was exceptionally creepy, too. And we are deeply suspicious, for very good reasons, of the fact that most of the public narratives of disability involve plucky little humans “overcoming” their “handicaps”—even if we don’t mind touting the achievements of individuals with disabilities here and there as well.

So the Reeves caught a lot of extra grief that they didn’t really need, is what I’m saying. And it always struck me that Dana Reeve dealt with that, just as she dealt with her husband’s injury and its aftermath, with extraordinary equanimity and greatness of soul. I’m sorry she’s gone.

Posted by on 03/08 at 10:23 AM

Paralyses from spinal injuries are an interesting class of disabilities. I supported and supplemented all of my graduate education and most of my early academic career (those lovely meeger salaries in the 70’s), with ocean lifeguarding. One learns very quickly that the number one cause of spinal cord injury is diving accidents. I have had a loved one die from it, close friends paralyzed, and rescued and “treated” victims on too many occasions. In nearly every case, the incident could have been easily prevented (the % in which alcohol was involved is huge). Indeed most spinal injuries, nearly all, could have been prevented in some way, by choices made by the victim. And i think that the efforts of these people to “find a cure,” rather than accept long-term care and treatment, is from the constant awareness that they could have done something different, made a different choice. Children born with birth defects, disabilites created by diseases or other syndromes, children or adults permanently disabled by events in which they had no choices (war, car accidents, toxic environments, etc.), learning disabilities and the various associated disorders (even if they arose from living in hazardous environments) require all of us to boldly envision nurturing and care across the lifespans. It may be harder to dedicate one’s life to supporting and caring for a friend, or loved one, who just got too drunk and dove into the shallow end of the pool, but they too deserve our efforts. Dana Reeve showed us she knew how to care.

Posted by on 03/08 at 12:28 PM
Michael - way off topic, but upon opening FrontPage this am, fully prepared to cast my daily 10 or so votes for you as the most commie, Islamofascist, vile, evil, dumbest, worstest prof ever, I noticed that you no onger on the list—scrubbed! Not even in the running anymore, and after such a strong start, no less. Are my eyes playing tricks? Did you reform your ways in the last 48 hours?

Posted by on 03/08 at 12:35 PM
I’m still there, and in the lead, Mike.

And spyder, even though (of course) there was no alcohol involved in Reeve’s injury, I do think he spent some time grieving, and that we (I mean “all of us” this time) don’t adequately take that sort of thing—grief, temporality, drastically changed life-prospects—into account. You’re right that there can be vast differences among people with disabilities, some of whom were born with disabilities and some of whom become disabled because of illness or injury. That’s one of the reasons, I think, why there really is no “disability community” as such (hence my scare quotes): the conditions named by the term “disability” are just too numerous and various to grasp by one handle.

Posted by on 03/08 at 12:53 PM
actually… Michael is still on the list in my browser and:
whohoo, welcome back Mr. most dangerousestest professor.

Michael Berube Penn State University 66555
Todd Gitlin Columbia University 64715

Posted by on 03/08 at 12:56 PM
This was both fascinating and eye opening. Should x disability be cured, or considered part of the vast array of human-ness? I suspect that disabilities that specifically affect your mind or emotions are more controversial than those that more greatly affect your body. But then why was it so controversial for CR to try so hard for a cure?

On an informal poll at my ADD newsgroup, the consensus seemed to be that people would stick with having ADD, so long a we could keep our meds. Otherwise we’d choose to have it cured (if there was such a choice). ADD does affect emotions and thinking to some extent, yet we still felt like we’d be us (pretty much) without it.

Posted by on 03/08 at 03:35 PM
My daughter’s pediatrician has a daughter with Down syndrome. She says that if she could snap her fingers and “cure” her daughter instantly, she wouldn’t do it. She loves her daughter as she is, etc.

I get that and I admire it, but I don’t feel the same way. I love my daughter hugely and unconditionally, but I know that her Down syndrome makes things harder for her, and for us.

I believe that even without the extra chromosome, she’d still be her and I’d still love her. I’d take a safe and magical cure in a heartbeat, while it’s still my responsibility to make these decisions for her.

Where I get all squicky is where people - including doctors - start talking about a “cure” for Trisomy 21, a “completely preventable” disability. They mean routine pre-natal testing and abortion, and that raises every hackle on this pro-choice mama’s body.

Posted by Sarahlynn on 03/08 at 04:17 PM
As someone who has been disabled from childhood, I don’t see a sense of self-injury as necessarily accounting for a difference in acceptance or non-acceptance of the permanence of disability. Someone who is accustomed to being healthy and strong, accustomed to being able to accomplish what they want to, has a different experience of life than someone who has always lived with a difference and the need to accomodate it in all one’s plans. Christopher Reeve was an extreme example of that. Not only strong, healthy, and physically active for many years, but handsome, talented, successful in his work. He had decades of experience of deciding to make things happen a certain way in his life, and succeeding. That becomes a habit as much as anything else can, and it doesn’t require arrogance, or a sense of guilt, for that habit of mind to continue even after severe changes in one’s physical self. I suspect it would seem like a kind of betrayal of one’s self, for many people, to allow that to change. And when someone has a high profile, and is surrounded by research scientists eager to raise money telling one how soon (it was always within ten years) one could “fix” what has gone wrong, well, that’s just a natural extension of the approach to life we’ve all been encouraged to have. I was one of the people somewhat impatient with the fixation on fixing swirling around the Reeves, having dealt with too many people who didn’t accept my disability and didn’t approve of my doing so. But I had great respect for the two of them, and mostly feel that people with disabilities need to be allowed to find their own way, and not be told how they “ought” to view their disability by others, whether themselves disabled or not. And I wish we could let go of the need to categorize people by whether they “brought it on themselves,” or acquired an illnes or injury “innocently.” It’s akin to the distinction between the deserving poor and those in whom sin is detected, who therefore don’t deserve health care, or shelter, or kindness. Yesterday’s email detailing the subject matter of last night’s Nightline mentioned Dana Reeve, and said they’d be talking to someone who would tell us “what it’s like to get lung cancer after a smoke-free life.” Very much like what it’s like to get lung cancer after a lifetime of smoking, I guarantee you. The American belief that we can control our health by virtuous living, so that only sinners should get sick, benefits no one. It encourages the sick to react to their diagnosis by combing through their pasts to discover what they’ve done to deserve their illness, and it also encourages those who are inclined to see the disabled as lesser beings, by designating good health and physical and mental “normalcy” as signs of virtue in the self and in the family. My first thought when I read Dana Reeve had died was of their son, who is still a teen-ager. It must have been so hard for her to leave him, so young and so soon after losing his father. It would have been just as hard if she’d smoked.

Posted by on 03/08 at 04:20 PM
But I had great respect for the two of them, and mostly feel that people with disabilities need to be allowed to find their own way, and not be told how they “ought” to view their disability by others, whether themselves disabled or not.

Thank you for saying so, Maud. I wish I had put it so clearly myself.

And thanks for mentioning the Reeves’ son: Will Reeve is, in fact, only 13. I can’t begin to imagine how hard this is for him, quite apart from how hard it was for his mother to leave him.

Posted by Michael on 03/08 at 04:26 PM
And thanks also to Sarahlynn. I too get extremely antsy at the idea that Down syndrome is “preventable.” About various parental interventions, ranging from “corrective” surgery to vitamin therapy to targeted nutrition, I could not be more ambivalent. But I am not going to go around telling other parents how to deal with disability—or, for that matter, trying to pass laws making certain kinds of childbearing mandatory.

Posted by Michael on 03/08 at 04:30 PM
Maud, thank you for an excellent post.

Posted by John Protevi on 03/08 at 05:07 PM
Maud, what John Protevi said.

Posted by nolo on 03/08 at 05:49 PM
maud,

Your post brought me to tears. Thank you so very much for writing here.

My thoughts immediately went to Chris as well. I am the only surviving parent of two sons, since the youngest was 3. They are grown now, but while both were still growing up, I felt the most intense obligation to stay alive for their sakes.

“It must have been so hard for her to leave him, so young and so soon after losing his father. It would have been just as hard if she’d smoked.”

Amen.

sw

Posted by on 03/08 at 06:59 PM
Michael,

Thanks for your great post. I have a great friend who is a parapeligic (C-3 break in a diving accident, a college level swimmer by the way) and remember him talking of Christopher Reeves. He had long since accepted his position as permanent, but because Christopher Reeves was such a public person, he went through much of his process in public for the whole world to see and judge, unlike my friend who went through much of the process in private.

My friend always talked of maybe a “cure” coming someday but has always know it wouldn’t be in his lifetime. He often spoke of not wishing the accident never happened but wishing the break had been C-4 or C-5 so he would have more use of his arms. Its all about perspective.Quads tend to have very short lifes but I could always tell he had some hope deep in his mind. He is one of the best people I have ever know and his wife is even better (she was his nurse in recovery). The story of the Reeves’ has always felt closer to home because of my friends and I appreciate your thoughts and the other comments.

Posted by on 03/09 at 12:06 AM
I too (also parent of child with ‘birth defect/disability) am DEEPLY disturbed by the prospect of that new show Miracle Worker and I would love to hear more. Please do get started on it, and keep going! It disturbs me much more, though in a different way, than the high-crisis birth shows where babies with birth defects are made a topic for the drama of cheap pity and their parents emotions become a spectacle.

Posted by on 03/09 at 03:44 PM
Thank you Maud and everyone else. This is a topic I have spent hours debating with others, but finally gave it up because I realized that there is a different answer for each individual. I worked with hearing impaired students for awhile and there is a big distinction between “deaf” and “Deaf.” (Big D Deaf is immersed in Deaf culture). Most deaf are very supportive of cochlear implants and the Deaf are not. I always said that if I had a deaf child, I would move to a Deaf friendly community, try to raise them Deaf, never intervene with a cochlear, and let the child make the decision later in life. Many other hearing people can’t grasp that. I owe my perspective to my grandmother who raised her son with Down Syndrome (now 51) in an era when people “just didn’t do that.”

Posted by Donna on 03/10 at 01:31 PM
Donna, thanks for commenting—undoubtedly, the Deaf are the group with the strongest claim to a “culture” that is worth preserving for its own sake. There is no parallel, really, for Down syndrome, or even (though not everyone will agree with me on this) for people with motor impairments. And the history of audism is really quite brutal, and worth resisting on its own terms. So the skepticism about cochlear implants isn’t hard for me to understand. Ditto for prenatal screening to detect the roughly twenty percent of deaf children whose deafness can be spotted in the karyotype.

Scott, thanks for telling us about your friend, and for introducing a very useful form of specificity into the debate about “cures”: wishing to have more use of one’s arms seems an altogether modest and reasonable thing, one which disability advocates should (I think) honor. And Fiona, I’ll try to watch Miracle Workers, but I can’t promise that I’ll be able to take it.

Posted by on 03/10 at 02:33 PM

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