Bioethics, healthcare policy, and related issues.
I need to play weaker defense.
That’s a conclusion I just now came to after struggling to understand my own reactions to things I’d been reading, and in particular to why everyone I’d been reading seemed so angry all the time. Since it seemed to me they didn’t have reasons to be so angry, there was apparently something wrong, and I was sorely tempted to put it right. I knew, too, that they wouldn’t appreciate my assistance in encouraging them not to be angry about the things they were angry about, and then they would be angry at me, which really wouldn’t be fair.
So, before even attempting to help all those angry people realize they were wrong to be so angry, I’m already [more of] the asshole [than usual] – supposedly. And that makes me angry, so I began devising all these imaginary ripostes to the as-yet-only-potential criticisms I knew I would get for helping the angry people see things my way. And the more I thought about the issues at hand, the more I had to defend myself against attacks from people I was only trying to straighten out for their own benefit, to the point that this defensiveness defined my understanding of the issues – making myself right was the test of the correctness of the positions I took. The more tenacious my defensiveness became, the harder it was to understand what all the angry people were saying except in ways that automatically made them wrong, so I could be right.
Clearly, Tenacious D is a considerable mind-fucking auto-petard that one might best be rid of if one hopes to understand others in non-assholish ways.*
* Yes, it’s also the name of the worst rock-’n-roll band in the entire world, including all the French ones.
What brings this all up is some reading I’ve been doing on blogs devoted to disability issues, or written by a person with a disability or the parent of a child with a disability. In these people, the quality of gruntledness certainly is strained, you betcha. In particular, there is a common sense of persecution running through a lot of this writing, ranging from full-blown they’re-coming-to-kill-us-all hysterics to a kind of resigned resentment stemming from the interminable hassles that arise in the lives of people with disabilities.
It’s hardly surprising that would be so. But I find myself caught in a bind while reading and trying to understand what they’re saying. I like to believe I’m strongly sympathetic to disability-rights issues, and to the broader arguments many people with disabilities make about the skewed definitions of “normality” and “health” that leave them permanently defined as medically “Other”, or about the appropriate goals of care for persons with disabilities. But as a nominally non-disabled person with a formal academic background in health issues (medical ethics, not clinical care), I tend to identify as part of the professional community rather than as an activist or “health consumer”. And that creates the “defensiveness” that I mention – I react to the arguments of disability activists as an outsider looking in, but to criticisms of health professionals with a kind of almost personal resentment (which is distinctly odd, because I’m not a clinician, am not now even working in a clinical environment, and as a medical humanities type ought to have a vested interested in seeing those fields criticised). Being sensitive to criticisms of the healthcare professions, and sympathetic to its outsiders, ought to make me at least neutral toward these complaints, but that’s often not where I find myself.
Of course, privileging the voice of the people directly affected does not mean that they’re always right. But I notice that I tend to spot errors, misconceptions, or possible over-sensitivities immediately, and use them as reasons to discount the larger message being put forth. For instance (the incident that prompted this post), I was directed a while back to a really fascinating and engaging blog –
My Beloved Monster and Me (recently renamed: Schuyler’s Monster – The Blog) – written by the father of a little girl with a rare neurological disorder resulting in mutism and other disabilities. He’s more or less the coolest dad ever, and she’s the most heart-melting little girl in existence, and they seem to lead a life of unbroken shared joy in each other. But there’s a clear undercurrent of anger that resurfaces again and again in his blog. Much of it is deserved – prompted by the clueless school officials who can’t figure out how to deal with his kid, the nasty bullies at school who make fun of her for not talking, the really disgusting shits who post insults and threats to his blog, and his growing fear of what may happen if her condition worsens. But some of it seems reflexive. Recently he posted this compelling rant:
Misty Cargill needs a kidney transplant.
Out of 69,000 Americans on the waiting list for a kidney transplant, only about 16,000 will receive one this year. No one knows who will be next to get a kidney, but Misty knows it won’t be her. She knows because she can’t get on the list.
Because of her mental disability. . . .
Today, it suddenly became clear once again why we were correct not to have such a test administered to Schuyler [his daughter], and why we likely never will. Today, I heard the story of Misty Cargill, a young woman who goes to a job and has a boyfriend who takes her to the movies and who bowls in a league and who can’t get a life-saving procedure because someone somewhere has decided that she’s retarded, and retards don’t deserve to live as much as the rest of us. . . .
It’s a hard, rough, shitty world for broken people. Don’t you ever doubt that, not for a goddamned second.
If I were the parent of a child with a neurological condition that makes communication, school, and test-taking difficult, I’d also be terrified of stories like that one. But as an outsider looking in, I can’t help noticing other things: that nobody involved in the issue says Cargill can’t get a transplant because she’s mentally handicapped (or even, in fact, that she can’t get a transplant). That line comes from a disability activist who openly acknowledges that she assumes that’s the problem; the blogger latches on to that as fact because it fits his embattled sense of life with a disability. The actual problem seems to be that the transplant facility thought the patient was not mentally competent to give legal consent for the procedure, and so referred her to the relevant state agency, which determined she was competent and referred her back. Presumably, the next step will be to get her consent and then evaluate her for a transplant – which all seems perfectly reasonable to this outsider. (There was no indication whatsoever that the transplant agency wouldn’t list her if she could give consent; they just haven’t gotten past that point of the process yet.)**
Considering that a major historical problem for the mentally handicapped, and a major focus of activism on their behalf, has been the abuse of their rights to give or withhold a valid, informed, consent for medical treatment, it seems not merely alarmist but counterproductive, or at least contradictory, to lambaste this hospital for refusing to perform surgery on the patient without legally valid consent, or for refusing to accept a questionable consent from the patient without an authoritative opinion about her competency. The safeguards the hospital attempted to invoke are ones the medical ethics community, in particular, fought to erect – and which are now criticized for achieving precisely the purposes they were meant to serve. In other words, I see (from the limited available information) a professional community doing the right thing to respect this patient’s needs and rights, but this father, and almost everyone else reacting to this story, sees rampaging Visigoths hell-bent on killing a poor, defenseless retard girl.*** I find that frustrating because it seems to me that, even if this patient’s care was delayed without benefit, any system that would have sped her through more quickly would undoubtedly be much, much more abusive to many others who need greater protections – and just imagine the howls when one of those cases surfaced in the news!
I find myself almost physically straining to dismiss the fears and accusations of those who complain about this incident – to point to factual errors or questionable assumptions in their version of the story to reject not only the implicit conclusion (“this person is being treated unfairly”) but the suspicious attitude it arises from as well (“people like this patient are constantly in danger of being systematically mistreated”). But the thing I have to remind myself of is that, while the former claim appears to be evidence for the latter (i.e., if this patient really is being treated unfairly, it would be easier to believe that other patients like her are frequently treated unfairly), the falsity of that claim is not evidence against the latter (i.e., the fact that one particular patient is not mistreated does not prove that mistreatment is not still common). As someone who has taught years’ worth of undergraduate logic, being sucked so easily into the Fallacy of Denying the Antecedent is both embarrassing and evidence of my willingness to deny a worldview that I find unflattering to my own biases, on the strength of the flimsiest evidence. Tenacious D.
Worse, it is not really deniable that people with disabilities are shafted by “the system” in uncountable ways. For many, the needless barriers they face can literally be life-threatening; others live with the knowledge that whatever empowerment they enjoy in their lives could be lost in a heartbeat, and they too would face the same dangers and barriers. Their frustration is justified, and it would be hard, in that position, not to believe the deck was deliberately stacked against you. (Not to mention that, even if these barriers are merely the products of a society that simply doesn’t bother to think about its outliers and non-typicals, that in itself would be grounds for anger and resentment.) If you live with certain kinds of disability, or any disability severe enough to need major accommodation, anger at your persistent mistreatment would be the only rational, self-affirming response.
And still I find myself with this defensive reaction, or perhaps a reaction of annoyance at the constant complaints, the constant implications of conspiracy or discrimination or deliberate neglect, that seem to characterize much disability activism. “Not Dead Yet” particularly peeves me with their insistence that nobody should be allowed access to assistance in suicide because some disabled people could be pushed into it. Aside from the groundless paranoia with which they choose to frame the issue, their stance seems like a selfish insistence that only their issues matter; combining this with their childish disruptive antics and heated rhetoric, they seem to exhibit everything that’s wrong with the hair-trigger adversarial posture that is so common in approaching these issues.
Yet . . . even they have a point. As a non-disabled person, I see no reason that physician-assisted suicide can’t be managed with appropriate procedural safeguards against coercion; if I were a disabled person, the history of abuse and, yes, medicalized murder that has stalked that community might loom much larger in my mind as still-present dangers. The black community is highly sensitized to the Tuskegee experiment and possible similar abuses; I regret but sympathize with that fact. Surely the disabled community has as much right to their own suspicions, but I find it a harder task to see things from that perspective.
At the same time, why should the “disabled perspective” and the “non-disabled perspective” (and acknowledging that there is no “the” perspective in either case) be so different? Many of the issues and fears that arise most frequently are factual questions on which, presumably, there can be agreement. But so much of the debate hinges on questions of interpretation rather than fact: was Misty Cargill’s denial of a transplant really the product of bias against the cognitively disabled, as one activist (and most of the bloggers and columnists) assumes?, or was it a good-faith evaluation that the difficulty for her in managing her own care after transplant made the likely outcome in her case worse than that for another possible recipient? Without access to the thinking and biases of the evaluators, we can only speculate – and those speculations commonly run in opposite directions for disabled and non-disabled viewers.
What worries me about my responses, my “perspective”, is that I notice it is not merely unconvinced by some of the alarmist rhetoric within the disability community, but too quickly dismissive of it, and even hostile to or defensive about it. And that defensiveness, again, seems weird to me – I’m not the one doing the things they’re angry about, and nobody has accused me of anything. (I’m guessing that will change as soon as I hit “Publish” on this post, and perhaps deservedly. But I want to work through this issue and sometimes the only way is to take your turn in the dunk tank and let them start throwing at you.) I feel in a certain way – not rabidly, I can say, but not negligibly – like a racist who’s constantly ranting about uppity minorities who demand “special rights” and are never satisfied with all the good things they’ve got. I don’t have quite that opinion about the disabled, but I do find a similarly reactionary attitude in myself – a willingness to believe that certain complaints are unjustified without examining them.
In fact, I find myself reacting to the complaints of disability activists the way guilty white liberals react to racial inequality – with simultaneous desires both to acknowledge it and set it right, and to deny it to distance myself from any form of responsibility for it. I am convinced that some of the complaints one often hears from disability activists are unfounded; some of the demands made are unreasonable. But I also want to be an ally to those whose needs have not been made a part of our social-values equation. I recognize that my uneasiness is a product of my own cognitive dissonance in facing these contrary inclinations. It is the same uneasiness I felt when coming to terms with sexism and male privilege, the same that, as I say, whites often feel in coming to terms with racism and white complicity. Perhaps that dissonance is a sign of my evolving perspective, my struggle in working through my biases. But I consciously resist that evolution – I am not sure that throwing myself fully into agreement with some of the more extreme, or just more angry, claims of some activists is the right thing to do. In saying that, I feel like the unreconstructed male chauvinist who is constantly saying “Now, let’s examine your assumptions . . . ” – if you can’t just see the problem, then you’re an asshole. I don’t want to be an asshole on disability issues, but I admit I can’t just see (all of) the problems.
Part of the problem is that some of the claims activists make are just wrong. Part of it is that there is in fact heated disagreement within the disabled communities on many issues – disagreements that are not made easier to resolve, or easier for non-disabled allies to get right on, by the tendency on both sides of such controversies to characterize the other as oppressors, Nazis, or “. . . ists” of whatever kind. But part of it is my own tendency to reject positions that would force me out of my own worldview, my tendency to set myself and my life up as an evaluative norm when confronted with others’ lives and concerns, my unexamined (until now) feeling that being asked to change my mind on anything is an attack on me personally. Tenacious D.
** Here is the original NPR piece, which gives more info. It does seem as if the hospital was somewhat insensitive in communicating with the patient, and jumped to their conclusion before conducting a detailed evaluation, but otherwise the situation is largely as I suspected.
*** Here is a surprisingly even-handed piece from another parent of a child awaiting transplant.
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