Bioethics, healthcare policy, and related issues.
You’d think one of the most high-profile women’s health organizations in the country would steer clear of misogynist religious-right campaigns to curtail woman-centered healthcare. You’d be wrong.
Here’s a really great snippet from “An Examined Life” (which see). Renowned philosopher Judith Butler takes a walk with Sunaura Taylor, talking about the reality of disability and the ways physical impairment is perceived, and disability realized, by society. (One thing that was revelatory for me: Taylor refers to the city of San Francisco as “the most accessible place in the world”. I grew up near San Francisco and, while it’s an incredibly wonderful place, I’ve always regarded it as challenging; the hills and traffic, and narrow sidewalks, would have made me guess it would be one of the most difficult places to use a wheelchair. But Taylor notes that it has extensive curb cuts, good wheelchair-accessible public transportation, and a community that recognizes disability and welcomes people with impairments. This is telling testimony to the overriding importance of social context, rather than actual physical environment, to the reality of disability.)
This video is great in so many ways: Taylor’s discussion of the ways society makes her life with an impairment harder or easier; her description of the psychological burden in going into a coffee shop and ordering coffee, and then having to deal with the difficulties of either trying to carry it herself or asking for help – “it’s a political protest for me to go in”; the simple and lovely depiction of two affectionate people being out together, while not pretending the issue of disability doesn’t affect them; the segment in which they go into a used-clothing store (which charges by the pound! – I love San Francisco!) and buy Taylor a warm sweater, which is both a perfectly simple and normal act, and complicated by the ways impairment affects her ability to try it on and the process of payment – ending with the store clerk’s matter-of-factly accommodating reaction. Taylor works in a useful bit of disability-theory: the distinction between “impairment” (physical limitations) and “disability” (difficulties in living caused by social context or discrimination), and the video underscores that point again and again as Taylor goes about her day and talks about how disability affects her. (I’m not sure I’d go so far as to say that she has “what the medical world has labeled as arthrogryphosis”. I’m very much sympathetic to the notion of individualized definitions of disease and health, but I don’t think that means there’s no such thing as a diagnosible condition. I see no reason to say that she doesn’t really have arthrogryphosis if she meets the diagnostic criteria for it – as, by her own description, she seems to do. Pointedly repudiating her own use of that name, as she does in the video, doesn’t seem to me to gain anything; whether she wants to call it a “disease” is another matter.) There are also brilliant moments of reflection on the nature of embodiment and what it means to live an embodied life in a social context.
Just a beautiful, sweet film with surprisingly profound content, visually and verbally. I can’t wait to see the rest of this series.
Taylor: When do you still count as a human?
Butler: My sense is that what’s at stake here is really rethinking the human as a site of interdependency.
. . .
Butler: [When] you ask for the coffee, or indeed even ask for some assistance with the coffee, you’re basically posing the question “Do we or do we not help each other with basic needs?”
Today’s news is that an amendment to the Republicans’ medical-residency defunding bill, prohibiting the use of any medical-education funding for “training in the provision of abortions”, was passed in the House by an overwhelmingly partisan vote. The event is not of great practical significance: this amendment is very unlikely to emerge from the Senate, and the bill is almost certain to be vetoed anyway. But it marks yet another front in the right wing’s ceaseless war on women’s healthcare, and yet another point-scoring display of how reckless – or simply antagonistic – they are willing to be with women’s lives.
The amendment is odd, though, and uglier even than it seems. It is so vaguely written that it is hard to figure out just how it would work if it were enacted, but its most likely interpretation would be literally deadly. It also extends the odious “conscience clause” for neglect of patients to every health plan, contract facility, professional group, doctor, nurse, or other staffmember at every medical school and teaching hospital in the nation, through a single sentence in this seemingly minor funding provision regarding training for one specific type of care.
The text of the amendment is here (scroll down). Recall this is an add-on to a larger bill; the parent bill seeks to defund all residency-level training in hospitals and medical schools nationwide, to force a new budget fight for training subsidies every year thereafter, rather than allowing block funding with less meddling. That bill by itself is part of the Republican assault on mainstream medicine – this proposed amendment is just a little anti-choice icing on the cake:
(d) Prohibition Against Abortion.–Section 340H of the Public Health Service Act (42 U.S.C. 256h) is amended by adding at the end the following new subsection:
“(k) Prohibition Against Abortion.–
“(1) None of the funds made available pursuant to subsection (g) shall be used to provide any abortion or training in the provision of abortions.
“(2) Paragraph (1) shall not apply to an abortion–
“(A) if the pregnancy is the result of an act of rape or incest; or
“(B) in the case where a woman suffers from a physical disorder, physical injury, or physical illness, that would, as certified by a physician, place the woman in danger of death unless an abortion is performed including a life endangering physical condition caused by or arising from the pregnancy itself.
“(3) None of the funds made available pursuant to subsection (g) may be provided to a qualified teaching health center if such center subjects any institutional or individual health care entity to discrimination on the basis that the health care entity does not provide, pay for, provide coverage of, or refer for abortions.
“(4) In this subsection, the term `health care entity’ includes an individual physician or other health care professional, a hospital, a provider-sponsored organization, a health maintenance organization, a health insurance plan, or any other kind of health care facility, organization, or plan.”
The Meaning – Such As It Is – of the Amendment
The amendment is so badly worded that it’s not clear what it actually does. Section (k)(1) – the central defunding provision – prohibits any residency training money from being “used to provide any abortion or training in the provision of abortion”, but this is far from self-explanatory.
The first part is confused: the funding in question (defined by the parent bill, HR1216, which addresses “funding for graduate medical education in qualified teaching health centers”) is for post-graduate medical education (i.e., medical residency programs or the equivalent), not actual clinical care, and the infamous “Hyde Amendment” prohibits federal money for abortion care in the first place, so the “provide any abortion” provision here would seem to be superfluous at best.
The real issue – and the way the amendment has been packaged – is the denial of funding to train residents in abortion techniques, with an eye toward making abortion unobtainable by flooding the country with surgeons and OB-GYNs who are simply incompetent to provide this standard care. Since almost all residency training takes place in facilities receiving federal subsidies, this provision, if enacted, would mean the coming generations of doctors would receive no training at all in central aspects of women’s healthcare. (It might be possible to obtain such training at the resident’s own expense, but it’s not clear where that would even be possible, since this amendment would restrict almost all centers even capable of providing the training regardless of who paid for it. The only realistic alternative would be to go overseas – again, at the doctor’s own expense – and even that would not necessarily be availing, because it raises licensing questions and is not a practical option for all residents, even the ones who were willing to go to such lengths.) This is not a new tactic on the anti-choice right wing; at one point, Georgetown University’s Medical Center attempted to ban its GYN residents from obtaining abortion training anywhere, even on their own outside the program – and this when such training was still funded. But making it mandatory, inescapable, and nation-wide, is a step never before taken.
But it also seems that much of the intended impact of the amendment could be escapable. Here, the strange wording of the amendment provides a paradoxical loophole. Section (k)(2) allows exceptions for “an abortion . . . ” involving the usual grudging set of special horrors (rape, incest, death*) that some of the right wing are willing to overlook. But, again, notwithstanding the wording of the amendment, there is no funding addressed by this amendment or its parent bill that would “provide an abortion” under such conditions, since it does not provide funding for clinical care in the first place. So these exemptions for “an abortion”, if they do anything at all, must modify the prohibition on “training in the provision of abortions” – that is, Section (k)(2) apparently grants exemptions for federal funding for “training in the provision of an abortion . . .” in pregnancies involving rape, incest, or the threat of death. But of course all techniques used in abortion may be used in cases involving these exempted situations – so presumably federally-funded health centers can provide any kind of appropriate “training in the provision of abortions” for pregnancies involving rape, incest, or the threat of death - after which it’s the doctors’ own concern how they actually put that training to use!
At least, that’s how it reads, in strict logical terms. That may not be how it would be implemented, however. It’s clear from the legislative history of the amendment – the discussion on the floor before it was voted on – that, regardless of the grammatical deficiencies of its author, it was in fact intended to prohibit all training in abortion techniques.† Probably the courts would interpret it that way, even if that’s not what it says. So in practice the impact of the amendment is (a) to prohibit (with few exceptions) all abortions provided using medical-residency training funds – a category which does not exist, and (b) to prohibit all training in all methods of abortion regardless of likely application.
Scope of Ban
The result of all this, as noted, would be to permanently exclude competency in certain standard professional practices from the skill set of all US-trained physicians in all specialties, even including surgery, obstetrics, and gynecology. The skills in question, it should be noted, would almost certainly include, among others, the following methods most commonly used in pregnancy termination:
However, every one of those techniques is used for purposes other than abortion (most commonly, to remove dead tissue left by menstrual troubles, fetal death or an incomplete miscarriage). As noted above, the strict text of the amendment allows training in “abortion” techniques if it is not intended to facilitate abortion, but that’s obviously not what the author hoped for, so presumably it must be interpreted to include any technique that could be used in abortion, regardless of its common application. That would also include:
Impact of Ban
What would it mean if doctors were banned from all training in those techniques, for all purposes? Well, among much other harm, it would mean that any woman would face almost certain death from any of the following conditions, for which one the above techniques is the standard treatment:
It would also mean that women would have no access to standard or best practices under any of the following conditions, among others, because those treatments involve techniques that could be used in abortion:
And of course there’s the whole conspiracy-of-silence-about-birth-control thing (see ‡ below).
In short, this ban – if it were enacted and if it were implemented as intended, and as anticipated by its legislative history – would kill even more women in the US, in coming years, than are currently sacrificed every year from the current lack of abortion providers. We would see a return to death from emergencies in childbirth – even for women not seeking elective abortion – at levels equivalent to that in some Third-World countries (since, given that appropriate care would be banned under this amendment, women facing certain labor-related emergencies would essentially be getting Third-World care even though best-practices-level care could have been provided). Many more would suffer, some greatly, from the lack of access to perfectly ordinary and preferred treatments for conditions having nothing to do with abortion. By making it illegal for physicians in training to obtain the necessary skills to treat a wide range of common gynecological conditions, some of them life-threatening, this amendment simply condemns their future patients to death, permanent disability, and other suffering from conditions for which safe and effective treatments were available, and which are universally practiced in every other advanced nation, but which their US-trained doctors were prohibited from learning.
[NB: I am not a clinician. The information above is common knowledge from widely-available sources. I am confident it is accurate; it is likely incomplete - the full impact of this legislation is likely worse than I have been able to describe. For actual clinical guidance or practical healthcare purposes, be sure to consult a knowledgeable clinician who has a full range of professional skills (i.e., one who was trained at a non-misogynistic healthcare center before this ban was enacted).]
As with so much of Republican “healthcare”, it’s hard to imagine this policy could ever be taken seriously, or enacted in any nation that makes a claim to basic decency. But as so often has been the case in the past, it’s best to be prepared to be surprised by what levels of indecency Republicans are willing to reach.
As I noted, the amendment contains inherent loopholes that its legislative history makes clear were unintentional. It may be possible to circumvent some of its provisions nonetheless, by sequestering training in the relevant techniques to programs ostensibly aimed at other conditions: that is, teach vacuum aspiration as a treatment for dysmenorrhea, teach dilation and extraction as a procedure for removal of a dead fetus after incomplete miscarriage, etc. This could work, but only if the ban were confined to overt training in abortion as such, and not to training in any procedure that could be used for abortion. There is no question how vicious, and how hostile to the lives of women seeking abortion, the supporters of this bill are; it remains to be seen if they are willing to sacrifice innocent breeders, too, in their pursuit of death for rebellious hussies. Virginia Foxx, the sponsor of this amendment, is known for her bizarre and incoherent beliefs; I think it is really likely she just does not understand the implications of her own amendment, and it would not in the end be taken to the extreme of a complete ban on all gynecological surgical methods. Or would it?
At any rate, the stupid and ugly thing is not going to pass. But it is worth considering just how serious its sponsors were, and how far they were willing to go, to kill and punish women who sought control of their reproductive organs, through the medium of their own doctors – how far they were willing to go to make the ignorance that characterizes Republican health and science policy across the board in fact mandatory for those who refuse to adopt their values voluntarily. As in so many cases, denial of knowledge is both the substance of, and a weapon for imposing, the right wing’s values as punishment upon those whose crimes are knowledge and independence.
* Note that only death – not merely unendurable pain, permanent disability, or traumatic stress – is grounds for exemption. And, too, the section on the woman’s health repeats the phrases “physical disorder . . . physical injury . . . etc.” four times, making it clear that there is to be no sympathy extended to women whose traumas are psychological, whether or not life-threatening, because that’s not part of your “physical” health. Apparently the people who are convinced there is such a thing as a soul are not convinced there is such a thing as a mind.
† This raises another issue: the technique for “provision of abortions” in the case of medical abortions – RU486 or similar medications – is simply to conduct an appropriate examination and write a prescription. The “techniques” for doing so are used in the treatment of every condition, and the specialized knowledge involved in using this particular medication is trivial to acquire independently. So, again by the strict logical meaning of the text, either hospitals are prohibited from teaching residents even to write prescriptions – unless they argue that techniques that merely could be, but are not intended to be, applied to abortions prohibited by this amendment are therefore not prohibited in their non-abortion contexts. And that – again, if logical consistency means anything – would authorize all abortion techniques, medical or surgical, for the reasons I explained in the preceding paragraph. But these are Republicans we’re talking about.
‡ And of course the anti-choice nuts characteristically go so far as to define mere fertilization as a “pregnancy”, and I have no doubt that the supporters of this amendment would argue that its provisions apply not merely to the prescription of abortion by medication, but also to post-coital medical contraception such as Plan B. But . . . Plan B and its like are essentially equivalent to nothing more than high doses of ordinary prescription birth control, and in fact ordinary birth control pills can be used for that purpose without a separate prescription. So presumably this amendment would also prohibit either training in prescription of oral contraceptives, or at least mentioning the fact that they can be used for morning-after contraception. So far does the absurdity extend, if you take this policy seriously.
So there’s a minor news bubble developing over the situation of Stanley Thornton, the “adult baby” recently profiled on a reality-TV show.Thornton lives an “adult baby” lifestyle – he dresses in baby-type clothes and a diaper, and has a nurse/baby relationship with a live-in friend who acts as a mother figure; she takes care of him and he is dependent on her, and they like it that way. There’s a surprisingly large community of such people, including the usual Internet chat rooms, Web sites, and so on. In addition, Thornton receives Social Security disability payments, due to a reported heart condition as well as taking multiple prescription medications. His caretaker is also on disability, for what reason I don’t know. They are not housebound, but neither is apparently employable; at any rate, neither has held a job in some time.
The problem is that they were incautious enough to go on a National Geographic TV special about “taboo” lifestyles. Senator Tom Coburn saw it and has now pressured the Social Security apparatus to investigate this particular person based on his appearance on the show. His ostensible grounds for complaint are that, from what he saw on the show, he believes Thornton appears to be capable of supporting himself:
Given that Mr. Thornton is able to determine what is appropriate attire and actions in public, drive himself to complete errands, design and custom-make baby furniture to support a 350-pound adult and run an Internet support group, it is possible that he has been improperly collecting disability benefits for a period of time.
The first thing to be said about this is that Coburn seems to have a very strange idea of what “disability” consists in, or what is or is not required to hold down a job. There is nothing about being SSI-eligible that implies you cannot “determine what is appropriate attire and actions in public”, or drive a car or take care of personal needs such as performing errands. And there is a vast gulf between being able to do all or any of that and being able to support yourself in a capitalist economy (to say nothing of one in a years-long recession with close to 10% unemployment). Coburn seems to harbor both a very condescending view of what disability is, and a typically hard-hearted view of what self-reliance requires: the disabled are essentially children, mentally non-competent, cannot even choose their own clothes, and certainly cannot act independently in public, drive, or run errands unsupervised; at the same time, anyone who’s not actually bedridden ought to earn their own living or die trying. Coburn’s worldview seems to be taken from a Dickens novel: spastic lunatics chained to the walls in Bedlam, and starving cripples begging in the streets. In addition, Coburn’s apparent belief that anyone who can cobble up a chair out of 2x4s (I’ve seen pictures of Thornton’s furniture; he’s not exactly Sam Maloof) should be working as a full-time woodcrafter is rather absurd, and the idea that maintaining a Web site imputes the ability to earn a living identifies someone who is clearly struggling to grasp the nature of the intertubes.
But for all its confusion, Coburn’s statement at least seems to focus on the right issue: it’s true that Thornton is not qualified for SSI disability payments unless he is actually disabled and partly or wholly unable to support himself, and it’s not unreasonable to ask whether that is true. Given that Thornton does offer his furniture plans for sale, and he and his friend apparently also offer a paid sleep-over service catering to other adult babies, he apparently does have some income and there may be a legitimate question about his qualifications for disability. As far as it goes, that’s not an unreasonable question to ask.
What gets me about this is that a senior US Senator took the time to pursue an inquiry against one single individual under a program that accounts for close to $13 Billion per year, or more than 20% of the entire national budget. Does he really think that is a productive use of his time? More to the point, was this really prompted by a suspicion that this one disabled guy might have some illicit sturdy-furniture income he hasn’t been reporting, and Coburn is determined to find out how much that is?
It seems obvious that Coburn focused on this case not because this SSDI recipient has made two or three pieces of exceedingly simple furniture (Coburn’s letter notes that one basic chair took him a year and a half just to design – hardly qualification for gainful employment), but because “his choice to live as an adult baby violates societal norms”, as Coburn himself puts it. In fact, although Coburn’s letter ostensibly focuses on Thornton’s possible ability to hold a job, it repeatedly mentions his lifestyle. More than that, Coburn’s official Senate Web page touts the same letter without a single reference to actual qualifications for disability; instead, it proudly notes that Coburn is “requesting an investigation of how people choosing certain lifestyles – focusing specifically on those who live their lives role-playing as ‘adult babies,’ are able to get taxpayer-funded Social Security Disability Insurance (SSDI)”. In short, Coburn is using his position as ranking Republican on the Senate Sub-Committee on Investigations to bring down the heat on “people choosing certain lifestyles” – for which the issue of possible income on the side is only a convenient pretext. And the crowing and mockery this has already generated on the usual right-wing Web sites can easily be imagined.
It’s hardly worth saying that this is ugly and mean-spirited, or that it makes little sense if taken at face value. Whether or not this person is disabled has nothing to do with how he chooses to dress or what kinds of emotional relationships he values. And the nonsense about driving, running errands, or designing furniture is pathetic as an excuse for a challenge to what is apparently a documented medical disability. Coburn has found someone whose lifestyle he disapproves, and is taking advantage of the fact that it’s unusual and off-putting to many people to harm that person while grandstanding on the issue to promote his anti-social, anti-government ideology.
It’s not like he wouldn’t have been glad to cut anybody else’s Social Security benefits (Coburn has consistently voted against virtually every aspect of Medicare, Medicaid, SCHIP, and other healthcare programs, against the SSI “lockbox”, and in favor of privatizing Social Security). But finding someone in the program he can despise, and then inviting (and getting, in spades, from the right wing) open mockery of that person’s lifestyle as a lever for attacking their health benefits, is a right-wing two-fer: hurting people who aren’t like them, while casting social welfare as unnecessary or a fraud. The message, in political or social terms, is clear enough. But the message for the disabled, and those with alternative lives, is also clear: if you’re disabled, don’t be weird, because it makes you a target; and if you’re weird, don’t expect help if you’re also disabled, because you don’t deserve it.
Here’s a post submitted to “Ask the Ethicist” by Christopher:
I am gay and for 20 years, I have had a best friend and mentor who is also gay. Besides regular friendship, I have taken care of him when he’s sick, staying at his house, getting him to the doctor. But we do not live together. There has never been a sexual component to the friendship.
He is getting ready to retire. As part of his retirement package, he can designate a domestic partner to receive a payment of over $150,000 a year after his death. He has asked me if I want to do the paperwork to be his domestic partner. As I said, we do not and have never had a sexual relationship. I do not live with him. Is creating this arrangement unethical?
Thanks, Christopher, for your question. It’s an interesting situation; let’s see what readers have to say about it.
My response is below in comments. Readers: feel free to join the discussion!
(And feel free to post your own questions to “Ask the Ethicist” – see link in top right-hand sidebar!)
There’s a provocative post over at the excellent KevinMD Web site:
Overeating is a behavioral problem, not a surgical one
This may seem to be a statement of the obvious, but the solution to a behavioral problem is not surgery. Overeating is not a surgical problem — it is a behavioral one. The problem is not because the stomach is too big and needs to be made smaller. It is a function of how much food is put into the stomach. Surgical “solutions” should be the absolute last resort measure.
The letter – from an Australian physician who touts himself on the Web as a “DIY health” guru – goes on to make a number of good points about bariatric surgery (mostly stomach-banding), couched in terms of clinical efficacy and relative risk: it does not work for everyone; the campaign to expand the qualifying criteria may include patients who have marginal need or expected benefit; there are known side effects and long-term safety is unknown; the promoters are compromised by conflicts of interest. These are all relevant considerations. But the overall tone in the letter, and even more so the comments, is both judgmental and dismissive. (From commenters: “People are obese simply because of their own behavioral inability to control their diet . . . the solution still lies FIRST in the individual admitting his/her 100% responsibility in the problem weight.” “Obesity results solely from laziness and apathy, which consequently are the same traits that are leading to the devolution of our species.”)
The giveaway here is the headline: yes, overeating is of course a “behavioral problem”, not a surgical one, because in this context “behavioral problem” clearly refers to the etiology of a pathological condition (obesity), while “surgical [problem]” clearly refers to the preferred mode of treatment for that condition. The writer conflates the two categories, and then draws an inference from a logical contradiction of his own making: it’s true that the etiology of this condition is not its treatment, but that’s true in every case, so that hardly tells against that treatment considered in and of itself. We can reinterpret the sentence to make sense, but only by making it obviously absurd: either “Overeating is a behavioral treatment, not a surgical treatment” or “Overeating, not surgery, is the cause of obesity”. There is a vacuity of clinical concepts here that suggests something else is at work in the writer’s animosity to certain kinds of treatments.
What the writer is really trying to say is this: “Obesity is caused by behavior, and should not be treated by surgery”. And the logical implication of that statement, and the letter and comments that follow, is this: “Obesity is caused by behavior, and therefore should not be treated by surgery”. The clinical counter-indications for surgery (and medical treatments for obesity – he’s against pills, too) that the writer details do not really seem to be the issue in his mind. Instead, certain treatments are ruled in or out categorically, on the basis of criteria of appropriateness that seem to hinge on his view of what health and medicine are fundamentally about, or how they are fundamentally related. There is a sense that diet is better than medical treatment because it is lower-risk, but also a sense that people who brought their conditions upon themselves behaviorally should be expected to work out their own salvation without clinical intervention. There is a clear implication that the writer would still object to bariatric surgery even if it were safer and more effective, simply because it’s not the kind of treatment he thinks this condition should get, in some essential sense (“obvious[ly] . . . the solution to a behavioral problem is not surgery”). Because the condition is behavioral, the treatment should be behavioral: QED.
From this perspective, the choice of treatments for a given condition depends on some sort of criteria of categorical appropriateness – a determination of what kinds of treatments are appropriate to any given condition, only after which do questions of safety and efficacy come into play. (This becomes more obvious in the letter above when the writer airily dismisses the notorious psychological difficulties of dieting with remarks about “responsibility for one’s actions”.) And this is the question that really got my attention about this issue. The concept of “appropriate” treatment is one that gets to the heart of healthcare as a practice, and of the ethical dimensions of such seemingly scientific concepts as the definition of disease, relative risk, and clinical indications for treatment.
To define clinical indications in some way other than in terms of clinical efficacy establishes medicine as a categorically defined practice: a praxis incorporating certain beliefs or techniques that are “just right”, and eschewing others as “just wrong”. The old ethic of “doctor knows best” exemplifies this idea to some extent (in regard of the roles of patient and physician: the doctor prescribes; the patient complies). More broadly, medical ethics based on a perception of distinctly medical virtues and traditions (Pellegrino’s “internal ethic of medicine”) makes all of medicine categorical; more than that, it moves the locus of medical ethics entirely inside the profession, such that what is right or wrong for a given patient is what is or is not in keeping with the behavioral standards applicable to the doctor. Even more modern theories of medical ethics do the same to the extent that they perceive specific types of treatments as right or wrong in and of themselves.
The movement toward patient autonomy and patient-centered care challenges this ethos at a basic level: the whole idea that patients may determine their own interests for themselves necessarily implies that healthcare is defined as serving those interests (or else we get a macabre dissociation between what patients need and what healthcare is for). The patient-centered ethic has fundamentally reformed healthcare practice in many areas, most notably refusal and termination of unwanted treatments, and more indirectly through the rise of cosmetic, nutritional, sports- or adventure-oriented, assisted reproductive, and other forms of “aspirational” (rather than pathology-driven) healthcare. The idea that what patients need is not determined by the pursuit and maintenance of “normal species functioning” – never exceeding its bounds and normal range, either positively or negatively – throws open a potentially unlimited range of possible treatments for any given condition, and indeed a potentially unlimited range of praxis under any conditions, whether or not defined in terms of disease and treatment. (The body modification movement blows the doors off the disease/treatment model, and increasingly off of any old-fashioned notions of normal species functioning.)
From this perspective, it is impossible even to formulate a declaration of the form: Because the condition is ________, the treatment should be ________. Radically patient-centered care does not require a “condition” to authorize a “treatment”, and takes it as fundamental that some patients may deny that an otherwise-recognized “condition” even exists (as in the case of the “fat acceptance” movement), while others may perceive, personally, a pathology in what would previously have been perceived categorically as normal (as with gender identity disorder). In addition, the particular best treatment for any given patient, whatever their circumstances, will be the one that best meets that patient’s interests as they themselves understand them – which may well be a riskier surgical procedure rather than a more burdensome lifestyle change, or vice versa, as they themselves perceive is best for them.
The significance of this non-categorical, patient-centered, situationally-responsive understanding of healthcare praxis is enormous. Aside from the overt impact on practical healthcare that the patient-autonomy movement continues to have, embracing a truly patient-centered ethic of care guides thinking about how to understand patient needs and how to meet them. In particular, it rules out categorical thinking of the type that prohibits providing certain treatments (with due consideration of cost, risk, and expected benefit) for a given patient or category of patient because they do not conform to some generic standard of appropriateness, and it requires that the patient’s own understanding of their goals, priorities, and risk-tolerance, be the determinative factors. Clearly the message hasn’t reached all corners yet.
Patti Davis – daughter of Ronald Reagan – has an opinion article in Time Magazine today, arguing against the release of John Hinckley from the psychiatric hospital where he was confined after attempting to assassinate Reagan 30 years ago this week, in the throes of a psychiatric obsession that led him to seek fame through violence. The piece is calm and rationally written, and sympathetically conveys the suffering of the several victims of the shooting and their families. But it’s a perfect example of the dangers of confusing punitive and rehabilitative detention, and of treating medicine and psychiatry as tools for governmental control of citizens’ beliefs, values, or behavior.
The “Baby Joseph” case has been making the rounds of the right-wing press for some time, and is now in the mainstream press due to a confluence of right-wing hype and a predictably distorted Canada-vs.-US angle. As always, bad cases make good press releases, and rational standards of care suffer.
USAToday reports a study of the high rate of suicide and drug-related deaths in the military. The report concludes that such deaths have increased because soldiers, particularly during wartime, are “inclined toward risky personal behavior”.
After nine years of war, the Army attracts recruits ready for combat but inclined toward risky personal behavior — a volatile mix that led to more deaths from suicide, drug overdoses and drinking and driving than from warfare, an Army review concludes. “Simply stated, we are often more dangerous to ourselves than the enemy,” says the 15-month study, released Thursday.
Commanders have failed to identify and monitor soldiers prone to risk-taking behavior, the report says. As a result, suicides among soldiers have soared. . . .
Many recruits join the Army knowing they will be sent to combat, so they may “even be more comfortable accepting high levels of risk and uncertainty in their lives,” the report says. . . .
Chiarelli commissioned the review 15 months ago as the Army suicide rate exceeded that for civilians. The study says poor command decisions helped contribute to a record 160 suicides by active-duty soldiers last year and an additional 146 deaths resulted from risky behavior such as drug or prescription medication abuse. Seventy-four of those deaths were overdoses.
Randall McElroy III, at The Distributed Republic, has a useful comment:
Internal investigations by government agencies always seem to turn out this way. It’s not the multiple deployments, the stress of fighting in a conflict where you can’t tell who wants to kill you until they’re doing it, the moral burden of shooting at innocent people, the vagueness of the goals of the conflict, or any of that. In other words, it’s not the essential part of what soldiers do these days.
It’s that, for some reason, without any causes, soldiers are engaging in risky behavior, and their commanders are just too darn earnest about prosecuting the war to notice.
However, I wanted to note the way drug- and alcohol-related deaths are handled in this story.
Half of all such deaths in this study, and a quarter of all “risky behavior” deaths for last year, were caused by drug overdoses. Soldiers are taking illegal drugs and dying from them, at higher rates than among civilians. Had these been civilian deaths, the narrative would have been simple: junkies OD and die. Surely far more than 74 civilians fatally ODed last year (though the per-capita rate is still lower); you don’t see many stories about this growing menace. What you certainly don’t see are civilian drug users characterized as “risk takers” or “comfortable accepting high levels of risk and uncertainty in their lives”. Convulsing to death with a crack pipe in your hand, if you’re a soldier, however, is apparently something like fastroping into a hot LZ or charging a machine-gun with a bayonet – the sort of thing those gung-ho heroes do because, you know, they just can’t help being so macho.
I wouldn’t mind this so much, if it were in any way honest. Identifying psychological factors that contribute to drug-taking, in fact, is a welcome step forward (even if slightly implausible in this case; chalking drug use up to simply being “prone to risk-taking behavior” is not only vague and one-dimensional, but even in some way circular). If the government were to take its own treatment of this issue seriously, and begin to sincerely probe the psychological and circumstantial factors that lead some people to drugs, we might be able to approach the issue of drug use in a more rational and realistic way. But of course that’s not what is being done here.
Characterizing drug-using soldiers as “risk-takers” is simply assigning a convenient euphemism to behavior, and its tragic consequences, that are relentlessly condemned in other circumstances. This is convenient in several ways: as McElroy notes, it lets the military off the hook for putting these soldiers under the stresses that, indirectly, killed them; it also preserves the unchallengeably heroic facade that the military is allowed to hide behind in all circumstances; and it gives these soldiers a pass on the judgmentalism that otherwise greets mental illness or drug use. Even outright suicide is treated as “risk-taking” – an absurd circumlocution that neatly obviates the inquiries into soldiers’ mental states, and the effect that military service has on them, that would otherwise be inevitable. In this way, behavior that would certainly be categorized as pathological, illegal, and disreputable in anyone else is folded into the military’s self-assumed and deliberately promoted ethos of heroism and rugged virtue.
Nobody is going to go on from here and say “Hey, you know, civilians also experience stress, self-medicate to deal with it, and exhibit a range of coping mechanisms influenced by their own psychology and their propensity for risk-taking. Maybe we should lighten up on the moralistic rhetoric about drugs and start recognizing the real-world factors that influence behavior, so we can respond more sympathetically and effectively. Maybe some proactive interventions with people at risk would help them out. Maybe our leaders have a responsibility to create better living conditions and offer better interventions to people at risk to help prevent self-destructive behaviors ahead of time, rather than sending millions of people to jail for being heroic, macho, rugged risk-takers.” Because the people who are painting military junkies and suicide cases as heroic, combat-ready risk-takers don’t really believe that and don’t really give a shit about people’s problems, in or especially out of the military. They certainly have no investment in being accurate, honest, realistic, or sympathetic about stress, pathology, and self-destructive behavior. Sugar-coating America’s Heroes to sweep a military-related drug problem under the rug avoids dealing with drugs realistically in any venue – which is the one thing any of our drug programs can never do.
Penn Jillette – magician, activist, raconteur, and all-round interesting character – posts this YouTube video in which he passes on what he says is the best advice ever given for relating to your elderly or incapacitated parents.
(See here for a similar observation from an equally-surprising source.)
The North Dakota House of Representatives has deliberately passed an unconstitutional law intended to foster a legal challenge to Roe v. Wade. It will probably fail in the state Senate, and almost certainly go nowhere even if it does pass, but it’s a classic example of the kind of gleeful, obstructionist bomb-throwing that characterizes the anti-woman brigade. It’s also – and equally characteristically – immensely stupid, and grossly ignorant.
North Dakota’s House of Representatives has passed a bill effectively outlawing abortion.
The House voted 51-41 this afternoon to declare that a fertilized egg has all the rights of any person.
That means a fetus could not be legally aborted without the procedure being considered murder.
Minot Republican Dan Ruby has sponsored other bills banning abortion in previous legislative sessions – all of which failed.
He also sponsored today’s bill and says it is compatable with Roe versus Wade – the Supreme Court decision which legalized abortion.
(Rep. Dan Ruby, -R- Minot) “This is the exact language that’s required by Roe vs. Wade. It stipulated that before a challenge can be made, we have to identify when life begins, and that’s what this does.”
It took some digging (for some reason, it appears, no newspaper reporting this could be bothered to include the name or number of the bill, and North Dakota’s legislative Web site seems almost designed for impenetrability), but this turns out to be North Dakota HB 1572 (2009), and it is a doozy. Apparently written by Rep. Ruby himself (clearly not by anybody familiar with the law), it is filled with folksy expressions of opinion, ungrammatical and ungrounded assertions, weird non-sequiturs, and vaguely written legal directives referencing “pre-born citizens”.
It is also a perfect illustration of the utterly bizarre, distorted, and obsessive fantasies that inform the anti-sex misogyny crowd’s perfervid agitation over controlling women’s reproduction, and of the deep and thoroughgoing ignorance that in many ways makes that movement possible.
First, Ruby is completely wrong on the Roe decision – which explicitly states that its holding is not dependent upon a determination of when personhood obtains, because that question has been so contentious throughout history. That particular point (along with the central holding defending abortion rights in general) was reiterated in Casey. These decisions do not require, and certainly do not request or encourage, the states to pass definition-of-personhood bills, or imply that doing so will invalidate the central holding regarding abortion. But that’s just ordinary ignorance – he simply doesn’t know what he’s talking about and doesn’t let that stop him. But Ruby’s brand of ignorance is of an extraordinary kind. He reaches great heights of stupidity when he tries to describe, and legislate for, women’s actual bodies.
The sections of the bill on abortion are filled with references to, and descriptions of, procedures that either don’t exist or are so badly garbled that it’s obvious the author simply has no idea whatsoever what he’s talking about. In an apparent attempt to ban abortion by intact dilation and extraction, the bill stipulates that:
Personhood may not be denied:
a. If all the body parts are pulled out of the uterus except the legs or arms or portions of legs or arms are still inside the uterus;. . .
f. Once a uterus is placed back inside the mother.
and states that:
When the uterus with a child inside is placed back inside the mother, personhood extends to all other preborn children due to equal protection of the laws.
This is just insane. He obviously just doesn’t know how childbirth and abortion actually work. (If it weren’t so scary, it would be humorously reminiscent of the bizarre fantasies about sex entertained by the title character of The 40 Year Old Virgin: “You know how when you grab a woman’s breast… it feels like… a bag of sand?” Yeah – and abortion involves taking a woman’s uterus out of her body and putting it back in with a fetus inside it. Good God – why doesn’t Dan Ruby just write a bill entitled “Whereas: I’ve Never Seen a Woman’s Body, Be It Resolved That I Desperately Need to Get Laid”?)
It goes on from there. After all the abortion stuff (or what appears to be abortion stuff, given the unimaginable ignorance and complete fantasy that makes up the content of the bill), there are a bunch of catch-all concluding sections, amending various parts of the state criminal code to stick the words “born alive child” (i.e., partially-delivered fetus) into them. And what crimes, exactly, is Dan Ruby desperate to prevent?
12.1-20-11. Incest. A person who intermarries, cohabits, or engages in a sexual act
with another person related to him . . . is guilty of a class C felony. If the victim is a born alive child, as defined
in section 1 of this Act, the person is guilty of a class B felony.
Subsection 2 of section 12.1-20-17 . . . A person who, [has HIV and] willfully transfers any of that person’s body fluid to another person is guilty of a class A felony. The person is guilty of a class AA felony if the victim is under the age of fifteen or the victim is a born alive child as defined in section 1 of this Act. Section
12.1-27.2-04.1. Possession of certain materials prohibited. A person is guilty of a
class C felony if, knowing of its character and content, that person knowingly possesses any
motion picture, photograph, or other visual representation that includes sexual conduct by a
minor. A person is guilty of a class B felony if the minor is a born alive child as defined in
section 1 of this Act.
Yep. Dan Ruby amended three sections of the North Dakota criminal code to prevent incest or child pornography with a fetus during the course of a birth or abortion, and to criminalize the deliberate infection of a fetus with HIV+ bodily fluids during those same procedures. Because apparently, to Dan Ruby, these are crimes that need to be deal with . . . right now. (Odd that he assigns them lower penalties in the case of fetuses – blatant discrimination, I would say.)
It’s just breathtaking how pervasively and openly ignorant the anti-choice movement is. They hide behind pseudo-feminst camouflage, pretending concern over the danger to women’s health of wholly imaginary abortion traumas, and giving pro-woman names to their anti-choice organizations and fake health clinics. They claim they are merely concerned for the “human rights” of microscopic non-persons. But at bottom they simply loathe women, and sexually independent women most of all. And like most forms of prejudice, misogyny harbors a vast pool of ignorance at its core. They don’t understand sex, women, or women’s bodies; they’ve been taught to hate and fear them, and have – either deliberately or accidentally – avoided acquiring the familiarity or comfort that would lay those fears to rest. Misogyny requires ignorance (part of the reason for the knowingly false propaganda anti-choicers spew, and their desperate hostility to factual sex education). Nowhere is that ignorance more obviously – and hilariously – displayed than in this insanely stupid bill.
That ignorance is accepted as unremarkable within the anti-choice movement. This level of complete factual incompetence would be unacceptable in any other area – let alone one that touched on the freedom and autonomy of more than half the human race, or on technical issues of medical procedure – but is no barrier to anti-choice policymaking, because factual accuracy is not a pre-requisite to policymaking about women’s lives. If this clown had submitted a bill demonstrating an equal level of scientific illiteracy in any other area of healthcare, any other technical subject at all, or any issue involving the fundamental rights of any group of people whose rights are taken seriously, he would be a laughingstock. Apparently, however, no other member of the North Dakota legislature spoke against this bill even on grounds of factual meaninglessness, to say nothing of pro-choice principle. Complete incompetence and paralytic ignorance (it is not clear how this bill even could be implemented) are no barrier to being a leader of the pro-choice movement, or to legislating away women’s control over their own bodies and lives.
I don’t know whether we should laugh to keep from crying, or cry through our laughter. But it remains clear how utterly negligible women’s interests are. You don’t even have to know, or be able to identify, what rights, exactly, you are stripping away from them, and what parts of their bodies you are criminalizing, to vitiate women’s own interests in their own lives.
Michael Gerson, Bush administration tool and terminal sufferer from Conservative Comprehension Disorder, continues his pattern of getting everything exactly backwards in his Washington Post-sponsored campaign of attacks on Barack Obama. The day after April Fool’s Day (he must have missed a deadline), Gerson published another misinformed screed, this one claiming that Obama is an “extremist” on abortion for opposing laws that would have sentenced women to death. As usual with Gerson and the forced-pregnancy crowd generally, almost everything he says is factually false, and a repetition of standard right-wing myths. The column consists of nothing more than Gerson and the Post carrying water for the organized anti-woman crowd by repeating their well-worn talking points verbatim, with no pretense of originality or reportorial integrity. (more…)
There is a terrible tension in healthcare – medicine, especially – between the use of expert knowledge to serve and heal those in need, and its use to aggrandize those with the knowledge and to control, mold, dictate to or torture those who fall into their hands. Knowing what can help another can easily be mistaken for “knowing what is best for them”, and historically has been so mistaken throughout the entire history of medicine as a profession. Today, it’s hard to hear the phrase “Doctor knows best” without an ironic smirk – the same smirk we conjure up for the parallel slogans of wrongheaded patriarchal oppression “Father knows best” and “Trust your government”. But it was not long ago that that slogan was the entirely literal creed of the most respected profession in Western society, and the work of challenging that creed and establishing the primacy of patient values and autonomy was lengthy and hard-fought. Its path was marked by the graves – quite literally the graves – of too many martyrs.
The most entrenched redoubt of medical power (though least well-grounded in research and knowledge) was psychiatry. Not only did the head-shrinkers lay claim to the most occult knowledge of human functioning and health, but they stood against a patient population that was inherently and societally almost unable to defend itself. Members of, possibly, the most severely and unsympathetically stigmatized stratum of society, mental patients were given no credence, and often had no recognized legal standing, to assert their own values and choices in treatment. And it is true that in many cases, patients with mental illness could not in fact act for their own interests or competently manage their own treatment and caretaking. But the presumption that no such patient could have a valid opinion about their own care, coupled with the prejudice that they were unfit for “normal” society, and likely dangerous, meant that virtually anything could be done to anyone, if advocated by a doctor armed with a diagnosis of mental illness. The things that were done were in many cases almost unthinkable.
Howard Dully spent over 40 years thinking about what was done to him. It took him a full life of hardship and failure to finally understand his own fate, and to come to terms with it. That anyone could have survived, let alone found peace and stability, after having lived his story, is an amazement in itself.
Dully is the author (with a professional co-writer) of My Lobotomy: A Memoir. The subject of the book is exactly what the title suggests. The story it contains is heartbreaking.
Dully’s life is difficult to summarize, except to say that it was unremittingly harsh almost from birth. Dully was born in California in 1948; his father was a hard and unemotional man who was driven to work excruciating hours, sometimes at as many as 4 or 5 low-skill physical labor jobs at the same time, partly by the need to support his family, partly by his own obsessive work ethic. Howard grew up a big kid (he’s now 6’7″, 350 lbs) who picked on his younger brother; when he was 4 his mother died after giving birth to a baby brother with a severe neurological deformation – the baby was placed with relatives and never spoken of again within the family. Howard and his family bounced around various friends’ and relatives’ homes as his father struggled to earn a living, and Howard suffered constantly both from missing his mother and from the severe discipline he suffered in some of these homes. Things really got bad when his father married again, to a woman with two sons of her own. Dully claims that she simply resented and hated him; from reading both his own stories of his home life, and some of his doctors’ notes, it is easy to believe he is correct. Howard, in the meantime, was legitimately a handful for any parent: he was apparently flightly and unreliable to an extreme degree, was aversive to school work, discipline, and hygiene, and often fought with his brothers, though they had a generally good relationship. As he got older he began doing stupid kid pranks – shoplifting and stealing items from cars, and playing hooky. As a huge and growing boy, he was constantly hungry, but was not allowed to eat between meals and was beaten for taking snacks. His step-mother also had some sort of obsession with her furniture and household trinkets, and would beat Howard for touching anything in the house, sitting on the parlor furniture, or using the front door. His step-mother would beat him for any infraction, and for things that weren’t infractions; later his brothers confirmed that she did indeed beat him for things she did not mind when done by her own sons, and would rave at him for no reason at all. When his father got home, he would get another beating – his father made him choose a piece of firewood to be beaten with, and Howard developed the skill of picking ones that were flexible enough to hurt less but strong enough not to break (which would encourage his father to continue the beating with his bare hand). Between his actual behavioral problems, his pre-adolescent awkwardness, the fact that his step-mother did seem to truly want him dead, and his father’s absence and emotionally and physically violent treatment, Howard seemed doomed to a life of misery no matter what might have happened. What actually did happen is unbelievable.
Howard’s step-mother apparently conceived the idea that she could get rid of Howard if she got the weight of professional opinion on her side. She began visiting a series of psychiatrists to complain about her son’s behavior, but none of them would agree he had to be institutionalized or removed from the home. Several wrote consulting notes to the effect that they were convinced her harsh treatment was the problem and that she should moderate her behavior toward the boy. She moved from doctor to doctor trying to find one that would agree with her. Finally she stumbled onto Dr. Walter Freeman.
Freeman was the pioneer, in the US, of the new treatment of psycho-surgery. He actually coined the word “lobotomy”, and popularized the use of that treatment in this country. He was the first US physician to see the procedure, after it was developed in Europe just before WWII; Freeman brought it back to the States and traveled the country in specially-modified vans or station wagons that he called his “Lobotomobiles”, giving demonstrations of both electro-convulsive therapy (using a machine he built himself; when it broke down, he simply held the bare wires against the patient’s head for as long as he felt was appropriate, with no mechanism for monitoring voltage or current) and lobotomy. According to the Dully, relating reports of academic researchers who studied Freeman’s career, Freeman was a constant self-promoter and showman: he would perform several lobotomies in a day, every day, in front of medical audiences, liked to demonstrate how easy it was by sometimes using ordinary household implements rather than surgical tools, and developed a signature two-handed bilateral technique in which he would insert “leucotomes” (the lobtomy knife) into both lobes of a patient’s brain and then simultaneously jerk them both through the tissue with a flourish. At times, his death rate ranged upward of 20%. Nobody seemed to think this was cause for alarm. Patients were operated on without their own knowledge or consent, and authorization was freely obtained from courts or patient guardians after reassurances from Freeman that the procedure would solve all the patients’ problems. Often, no precise psychiatric diagnosis was attempted before the lobotomy was performed; lobotomies were used for conditions ranging from headaches to schizophrenia. More than a few were performed on minors, even pre-teens; there were questions about such cases, but little organized opposition. Freeman was profiled in popular magazines, and sometimes hailed as a god, delivering sufferers from their misery. There were many detractors in the medical community, but the great benefit of lobotomy was that it often made patients docile enough to live with their families without monitoring, meaning they could be discharged from the large state mental institutions that were commonplace then. This made the procedure wildly popular with the managers of those institutions, whose patients had no effective representation to oppose the treatment plans made for them by others.
After a few years, Freeman heard about, and again pioneered, a variation of the lobotomy procedure called “trans-orbital lobotomy”, often referred to as “ice-pick lobotomy”. In that procedure, a long, sharp, thin instrument was pushed along the eyeball parallel to the nose, and through the back of the eye socket (“orbit”) into the skull, and into the frontal lobe of the brain. The instrument could then be levered back and forth, and up and down, to tear through the frontal lobes and disrupt their neural circuitry. There was no method for visualizing the exact placement of the instrument in the brain, or the location, depth, or extent of the lesions created; the method was simply to stick the metal rod in through the eye socket and wiggle it back and forth to tear the brain tissue randomly. The effect was almost as dramatic as an open-skull lobotomy, but there was no external wound, and it could be performed under mild anaesthesia. The procedure could be done in an ordinary doctor’s office, and took about ten minutes. In many cases, the surgical instrument used was, in fact, an ice pick. (Freeman’s personal lobotomy instrument was labled “Uline Ice Company”.) Patients were sometimes sent home afterward in a taxi cab.
Freeman began popularizing the trans-orbital lobotomy, sometimes performing as many as two dozen procedures a day on patients in mental institutions and hospitals. In some cases, patients were operated on against their consent; after the procedure, they lacked the drive and wherewithal to sue. After some years traveling the country in his Lobotomobile, he finally settled in the South San Francisco Bay Area, near where Howard Dully’s family were living. Eventually, Dully’s step-mother asked to see him.
Freeman met with her a number of times over a period of two months, duly recording her wild stories of Howard’s unmanageable behavior (some of which later turned out to be pure fabrications – such as the story that he had beaten his brain-damaged baby brother almost to death). From the beginning the step-mother openly solicited some kind of dramatic professional intervention. Freeman hesitated at first, insisting he would have to meet the patient and interview the other family members before coming to any conclusion. (What seems incredible is that he began formulating treatment plans with the mother for weeks before ever once meeting Howard.) He interviewed Howard’s father one time; the father gave a much more balanced report of Howard’s behavior, but Freeman didn’t pick up on the clue. He began to meet with Howard himself, and found him reasonably normal though somewhat uncommunicative (who wouldn’t be?). But he kept meeting with Howard’s step-mother, who still filled him with tales of how afraid she was of Howard, how her other sons were afraid of him and were constantly beaten up by him (they deny this), and finally how Howard had beaten up his baby brother in infancy (his entire family denies this – and note that the step-mother was not part of the family at that time). Freeman seems to have accepted everything she said, and viewed Howard’s truancy and other bad behavior through this fictionalized and delusional lens. After four meetings with the step-mother, only one meeting (ever) with Howard’s father, and four visits with Howard himself, Freeman recommended that they should attempt to “change his personality” with a trans-orbital lobotomy. Howard’s step-mother immediately agreed, and took the papers home for his father to sign, which he did without ever speaking to the doctor again. Freeman cautioned the parents not to tell Howard what would happen – only that he would be admitted to the hospital for “tests”. Howard excitedly looked forward to his night in the hospital, because he had heard they gave you Jell-O there. And they did. It was two weeks after his 12th birthday.
Freeman lobotomized Howard the next day. Howard has no memory of any of the events of that day. He contracted a fever and an apparent infection (Freeman was infamous for not sterilizing his instruments before surgery; you can see, in the actual photograph of Howard’s procedure, [see photo at end, below the jump] that he is not wearing gloves), but recovered soon enough.
The rest of his life was a disaster.
I met Robert Rummel-Hudson last night at his New York book party, celebrating the release of Schuyler’s Monster, his memoir of his daughter’s struggle to meet the challenges of having been born with polymicrogyria – a neurodevelopmental disease that prevents her from developing spoken language – and his own struggle to meet the challenges of parenthood and the demands imposed by his daughter’s condition. The book grew out of Rob’s gripping, heart-rending blog, Fighting Monsters with Rubber Swords.
Robert has been documenting, step-by-step, the pathway he, his equally-admirable wife Julie, and Schuyler (pr. “SKY-ler”) herself have followed, first coming to terms with Schuyler’s developmental difficulties, then battling the public schools’ broken and indifferent system for educating special-needs children until finally moving to a city (Plano, TX, of all places) that offered what Schuyler needed. At the urging of his growing base of enthralled fans and well-wishers, he turned the blog into a book that hit the market just this week. It has already received considerable word of mouth and small-market press attention even before release; I am convinced it is just about to explode into a real sensation, and deservedly so.
Robert has an ability to communicate the pathos and humor of his family’s situation, and even more strongly Schuyler’s unbelievably spunky and winning personality, and her brilliantly unique triumph over the multiple dirty tricks life has played her. Schuyler is without question the star of his blog (which, he says, she still has not read, nor has she the book, either, though she is fully aware that she is a media queen). It is impossible to read their story without falling in love with Schuyler (and indeed she is regularly showered with largesse by fans, often anonymous, who have visited the family’s Amazon wish-lists). “Schuyler has a posse!”, I told Rob, and he agreed that one of the most satisfying side-effects of blogging about her condition is that she has garnered such a wide-spread support base. That is due to Rob’s ability to make her come alive through his words – though it’s obvious Schuyler is giving him a lot of great material to work with.
In person, Rob comes across just as you’d imagine from his blog: funny, personable, thoughtful, fiercely dedicated to Schuyler and her needs, worried about her future, and laceratingly honest about his own uncertainties and shortcomings (which I think he overestimates). It was great fun meeting him, and I was glad to see the St. Martin’s Press staff just as enthused about the book as were the many fans who turned out to meet the author.
I mention all this simply to add this plug for a book that deserves to be read, and will break your heart and change your viewpoint when you have done so. I can’t communicate the impact of Rob’s blog or the book it gave rise to, but I urge everyone to experience them for themselves.
(1) Go buy this book:
(2) Go read this blog.
You can thank me later.
UPDATE: Fixed an editing mistake.
Joe Carter, rising star in the right-wing religious think tank milieu and blogger of the always-interesting Evangelical Outpost, makes one of his not-infrequent visits to fetus-fetish loopyland today. He contributes an overwrought and, basically, just kind of weird open letter to early-stage fetuses:
Let me begin by congratulating you on making it through the embryonic stage. Too many of our fellow humans don’t even make it as far as you have now. Many died of natural causes. Others were cut down prior to implantation by an abortifacient. Still others are trapped in the freezers of IVF clinics, in suspended animation awaiting their fate. . . .
He then offers “advice” to fetuses on how to avoid abortion (don’t have birth defects, don’t be part of an at-risk multiple pregnancy, etc.). Joe, it should be explained, is not dumb enough to think he can talk to fetuses. He just does it anyway. Naturally, all his “advice” to the fetus is really veiled criticism of the pregnant woman: for failing to carry three or more fetuses to term regardless of risk, for failing to have a child with birth defects, for being one of the roughly 0.04% of American women who pursue sex selection, or for having genetic-health preferences he doesn’t approve of.
Naturally as well, the piece goes to lengths to paint every possible alternative for a pregnant woman, except, notably, the one he approves of, as evidence of that woman’s depravity. He explicitly quotes the facts that:
Carrying three babies to term would more than double the woman’s risk of developing the most severe diseases of pregnancy, such as preeclampsia. The average triplet is born two months premature, significantly raising the risk of disabilities . . . .
But he excoriates the choice to reduce multiple pregnancies to avoid these risks. He characterizes the implantation of multiple embryos to increase chances of pregnancy (because of the high failure rates in IVF) as efforts “to save money” – but he previously harshly criticized Amy Richards, the subject of an infamous New York Times profile who had a selective reduction of her unplanned, accidental triplet pregnancy as well. So, not only is it immoral to subject yourself and your fetuses to the increased risk of multiple pregnancies, but it is also immoral to do anything about it if you do find yourself in that position. And, being unable to afford multiple rounds of IVF at $10,00 – $20,000 a shot is, of course, mere selfishness, but you’re forbidden to assert your own worth even if you didn’t pursue a multiple pregnancy “to save money”. (His pretended concern for the risks to the woman of a multiple pregnancy is clearly window-dressing; no woman is allowed to act to reduce that risk no matter how or why she encountered it.) You’re bad if you implant more than two embryos, you’re bad if you can’t afford not to, and you’re bad if you reduce the risks you face after stumbling through the previous two problems. In other words, taking any positive action to control your risks and outcomes according to your own values and desires is immoral.
The rest is just typical emotive fetus-swooning (“May our Lord have mercy on your poor fetal soul”; ” society has decided that it is better for you to be put to death”; “Your best hope is to pray and hope that others are praying for you too”) and woman-hating (there is not one reference to a woman’s “choice” that suggests there would be any positive benefit to her to control her own biological destiny; women’s autonomy is, literally, for Joe, nothing more than “the right to kill a fetus for any reason you choose” – not one of which such reasons he mentions or acknowledges might even exist). In none of the situations he mentions – birth defects, unplanned multiple pregnancies, risky pregnancies, genetic diagnosis – is there the slightest hint that being denied the right to control your own and your offspring’s future could be of any benefit. In every case, he picks what he considers the least defensible exercise of a woman’s choice not to carry a pregnancy – Down’s Syndrome, “squinting” – and mocks the very idea that anyone should be allowed to have preferences about the matter. More serious choices – Huntington’s Disease, Tay Sachs – are never mentioned, and clearly form no barrier to forcing women to continue a pregnancy against their will.
But what else would this be? I didn’t expect any sudden access of insight or empathy in such a post. I do find it useful to chart the clinical course of right-wing dementia, however. Now they’re talking to fetuses. What next? More importantly, is there an end stage, or are they all just going to wind up like Strom Thurmond, 100 years old, babbling like a banshee and yapping offensive remarks at women in their intermittent lucid moments? (OK – maybe this is the end stage. But how long can this go on?)
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.
“Blue”, of The Gimp Parade, has an interesting post on the differing reactions non-disabled people have to the disabled in different contexts, and on the expectations they seem to have for how the disabled are “supposed to”, or are allowed to, look to non-disabled eyes.
I’ve been thinking a lot lately about what people with disabilities look like and how it influences our interaction with the nondisabled in public. What disabled people are supposed to look like is part of the interaction too. . . .
Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one’s own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact. . . .
Okay, so I know it’s fear of difference and the old “there-but-for-the-grace-of” thing. And that’s fed by a history of segregation and institutionalization. I’m 37, by the way, and Americans in wheelchairs who are my age are pretty much the first generation allowed to attend public school with everyone else.
There was some head-squeezin’ taking place over my recent claim that many disabled persons believe “life with a disability is no more to be denigrated than life without one”. It’s just obvious to many people that having a “disability” makes your life objectively worse than otherwise, and presumably makes you objectively less happy than you would be without the disability. (A particularly stark example of this took place in an infamous encounter between utilitarian ethicist Peter Singer and disability activist Harriet McBryde Johnson, who uses a wheelchair, in which he insisted – against her objections – that having a “disability” was simply objectively worse than having some mere life difficulty such as being a victim of prejudice. I have always wondered at this in Singer, who, though controversial, is not usually unempathetic – at least, he feels chickens’ pain pretty intensely.) Seeing the disabled as “the disabled” makes it very hard not to respond to them in a way that foregrounds both the disability (rather than the person) and the observer’s interpretation of its significance.
This is an especially strong intuition for progressives for whom “helping the needy” is both a natural inclination and an inherent good (implicitly requiring that “being needy” is less good than not having a need, whereby one is “helping” by removing the need). Yet many people with disabilities would deny both that disability is necessarily an objective harm and that it necessarily makes them unhappy. Simultaneously, they are accutely aware of what is difficult for them that is not for those who do not have their disability, and many seek whatever aid is available – including medical treatment – to lessen that difficulty. Grasping this dichotomy is an important part of bringing disability into the range of human norm, and “the disabled” into the community of caring that progressives seek to build.
An old article by Mary Johnson that I just stumbled across in Ragged Edge Online asks why liberals “don’t get it” on disability rights:
During the debate over Terri Schiavo last fall, disability activists and scholars groused about both right-to-life and right-to-die advocates not understanding disability rights issues. . . .
It’s “downright weird,” says Michael Bérubé, whose 1996 book, Life As We Know it,about raising disabled son Jamie, became a bestseller.Bérubé calls liberals “oddly reluctant to see disability rights as part of a program of egalitarian civil rights.” . . .
Many leftists, says writer Marta Russell, simply think there is no movement; some believe the disability rights movement is too small to qualify as a real “movement.” There are more substantive reasons as well. “Some leftists don’t believe disability is an oppression that belongs on a theoretical par with race, gender or class. They may think disabled peoples lives are difficult and social justice lacking but they don’t see basic underlying institutional relations at work when it comes to disablement.” . . .
“I wish they understood that it was civil rights,” says Cyndi Jones, head of the Center for An Accessible Society. “Talk to progressives or liberals (which I use interchangeably): they just don’t see it as civil rights.” . . .
Jones talks about attending progressive media conferences and being the only one there concerned with disability rights. “They never think about making sure the meeting site is accessible, either,” she says. ” When you complain, though, you’re seen as a ‘whiny cripple.’”
An activist invited to be on a liberal talk show on public television finds the producer resisting the need for a sign-language interpreter, even when the activist offers to pay the cost. A progressive bookstore owner provides a ramp to a locked entrance and offers a doorbell; he is offended when local activists protest the segregated treatment. Liberals involved in election reform organize to stop new accessible computerized voting machines, arguing that they’re open to fraud.
These are good points.
Online Beeb has an interesting article on the debate over euthanasia in the UK. They quote Len Doyal as coming out in favor of active euthanasia, which their headline bills as some sort of shocker (readers of medical ethics literature will know this is not a new or even especially rare position to take – it has just been backburnered in the public debate on end-of-life care). The real point of interest to me was the breadth of opinion now being openly bandied about. Another interesting point is my recognition that some parts of that range of opinion are new, at least on the public stage, and some people or organizations that uphold what were once radical positions have been forced into opposing others who are now going further than those so-called radicals feel comfortable with.
All of which is by way of saying that there may be something to this slippery-slope business after all.
Saw the X-Men movie this past week, and was struck by how explicitly the “biological deviance” theme was brought out in the plot. Of course, that is the main driver of plot tension throughout the three movies (and to some degree in the original comic books, I gather, though I haven’t read them). But, even more so than in the first two movies, the third installment delves into the bio-politics of “normalcy” and prejudice, in interesting, though somewhat complicated, ways.
It’s a juicy subject for a worthwhile discussion, and a welcome sign in these days of otherwise unbridled bigotry and repression.
There is much buzz about a just-released report in the clinical journal Neurorehabilitation, which reports a case study of three patients, reportedly diagnosed with long-term persistent vegetative state, who were returned to full consciousness for a number of hours with doses of zolpidem, the medication in the sleeping pill “Ambien”. Clinicians and ethicists are warily interested; the “pro-life” blogosphere, of course, is uncritically beside itself over the news:
End the Madness: PVS is reversible or misdiagnosed [Pro-Life Blogs]
PVS is reversible and often misdiagnosed [HyScience]
Important News: Drug ‘Reverses’ Vegetative State [BlogsforTerri]
Rise and Talk [Premature Terminal Delivery]
Holy Cow! Patients in PVS Awakened by Sleeping Pill [Wesley J. Smith]
The Terri Schindler Schiavo Foundation has already demanded a moratorium on terminations of treatment for all patients in PVS on the strength of this report, as has their easily-misled former spokesperson, Pamela Hennessy.
Doctors tested embryos created by the woman and her “partner” using in-vitro fertilisation (IVF) methods for the cancer gene. Only unaffected embryos were implanted in her womb, the newspaper said. But it is not reported how many babies the so call “doctors” killed in the screening proucess.
It will surprise no one, I’m sure, that this makes not the slightest sense.
Glen McGee reports on this development in genetic diagnosis: England’s HFEA (national assisted-reproduction policy-making body) has finally agreed to authorize pre-implantation genetic diagnosis (“PIGD”) for some known cancer-linked genes (apparently BRCA1 & 2), but the genes in question are patented by a commercial corporation, Myriad, who flatly refuse to license the testing. So the regulatory barrier has been removed, but it is still illegal to perform tests which, presumably, patients want, and that could give them knowledge of a child’s predisposition to breast or ovarian cancer, because a commercial license-holder has decided unilaterally not to allow it.
I have blogged previously on the dangers of patents for ordinary genome sequences; this seems to be as stark an example as you could ask for. Basic information about people’s health status and prognosis is being withheld from them, deliberately, by an uninvolved third party acting under property rights law, of all things. Are people’s values and freedom ever going to be taken seriously in the healthcare arena?
A group of occupational-medicine physicians has released a white paper on the issue of disability certifications for impaired workers, holding that doctors often keep workers off the job too long after an injury or illness and that the specialty should adopt a “Stay at Work/Return to Work Process” as its fundamental organizing model for treating disability. That process seeks to minimize the time workers spend off the job, which, the authors assert, would be beneficial in many ways:
We know that much work disability is not required from a strictly medical point of view. We see devastating psychological, medical, social, and economic effects caused by unnecessarily prolonged work disability and loss of employability. We also see wasted human and financial resources and lost productivity.
Finding better ways of handling key non-medical aspects of the process that determines if an injured or ill person will stay at work or return to work will improve outcomes. Until now, the distinct nature and importance of the stay at work and return to work process (SAW/RTW) has been overlooked. Improvements to that process will support optimal health and function for more individuals, encourage their continuing contribution to society, help control the growth of disability program costs, and protect the competitive vitality of the North American economy.
This may all be true, but it causes concern nonetheless. Without comment, these authors introduce multiple factors into their outcome evaluation which are not related to, and in fact may conflict with, patient welfare. They say explicitly here, and throughout the paper, that the benefits of encouraging workers to take less time off the job for disability-related reasons include, among other things, harm to the “economy” (GDP, presumably), “contribution to society”, reduced costs of disability treatments, and worker productivity. In other words, among the major drivers for doctors to determine the course of individual patients’ care are the contributions those patients can make to overall economic goals valued by their employers, third-party healthcare payers, or “society”, not the patients themselves.
To put that another way, these authors are openly encouraging doctors to admit external economic values (in addition to the many that already impact treatment decisionmaking) to directly influence their decisions regarding their patients’ recovery from illness or injury – values that run directly counter to the patients’ own. There may be a problem there.
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