Disability and Normal, or "Normal"

This piece by S.I. Rosenbaum in The Atlantic, which uses the recently-deceased conjoined twins George and Lori Schappell to consider the ideas of disability and difference, is a… rich text. For one thing, it’s a good example of The Atlantic’s weird positioning as both America’s premiere neoconservative journal and a repository of unreconstructed social justice narratives that seem to operate totally independent of rapidly-if-quietly evolving progressive attitudes towards that sort of thing. (It seems like it’s always both 2003 and 2018 at The Atlantic.) More to the point, I think it’s a good example of the ever-deepening incoherence of modern disability norms, and particularly how disability activists want to have it every way they choose when it comes to difference. Let’s bullet point it.

• You can’t struggle to accommodate such a tiny number of people. Summarizing Rosenbaum’s piece, the subhead reads, “America is still struggling to accommodate bodies like [those of the Schappells],” and Rosenbaum writes that “American society is still struggling to determine whether to accommodate bodies like theirs.” Let’s concede that there’s a degree of expansiveness and symbol here, then drill down to the consideration of the Schappells as what they actually were, conjoined twins. The trouble with this statement is that it implies that society has had to make up its mind one way or another when it comes to accommodating conjoined twins, as if this represents some sort of broad social problem, when this is not possible because conjoined twins are incredibly rare. About one out of every 60,000 live births results in conjoined twins, with more than half of those delivered being stillborn; of those that are born alive, 35% die within a single day. To express this another way, about 3% of all live births in the United States are identical twins, and about 1% of all identical twin live births are conjoined. That is to say, about [edit] .03% of American births are of conjoined twins. The best estimates I’ve seen suggest maybe 10 or 12 conjoined twin births here a year, with a significant portion of those dying in early infancy.
  
  This is just a tiny, tiny population, which makes sense since there are obvious survivability challenges to the condition of being conjoined. (Indeed, in making it to 62 years old the Schappells became the second-longest living conjoined twins in known history.) America isn’t struggling to accommodate bodies like theirs because there are so few.
  
  You are entitled to find that observation callous or point-missing, but please understand that my argument is not that our society couldn’t better accommodate conjoined twins; we certainly could and should where we can. Instead, I point this out because I find this general stance to be a recurring theme within contemporary disability rights rhetoric: either ignoring the prevalence of given disabilities or treating discussion of prevalence as actively offensive. But society’s responsibility to accommodate disability will inevitably depend in part upon the prevalence of a given disability, as such determinations must take into account issues of resources and constraints on broader use of public spaces and facilities. We should of course engage in every reasonable effort to make life easier for people with rare disabilities. But it’s inevitable that the prevalence of a given disability is going to influence the logic behind the the accommodations we make. We require elevators in public buildings because very many people can’t physically negotiate stairs; we don’t ban flashing lights at arcades because a tiny portion of the population has photosensitive epilepsy. You can lament this calculus but you’ll never change it. And when someone makes affirmative claims about society’s refusal to accommodate the disabled, it helps for them to actually be referring to a real problem.

• It doesn’t help the disabled to demonize supportive care facilities. Rosenbaum makes a common kind of casually destructive indictment of facilities for the disabled when she refers to “disability gulags… [where] conditions could be abysmal, but even better-maintained facilities cut residents off from society and deprived them of autonomy.” This kind of unthinking dismissal of the value of such facilities is utterly commonplace in disability activist rhetoric, and it’s an immensely reductive perspective. Yes, in the past many such facilities were ugly places that needed serious reform. But eliminating such programs and institutions, rather than intelligently reforming them, has proven to be disastrous in many contexts as well. As Dr. Amy Lutz demonstrates in her book Chasing the Intact Mind, demonization of programs and facilities specifically for autistic people - attacked by disability activists as inherently vehicles of “segregation” - has mostly led to a shuttering of existing programs that are not replaced, leaving already-struggling families with more and more responsibility to care for severely disabled minor and adult children. For example, her research shows that when activists have successfully gotten 14(c) programs for the disabled shut down, almost none of the disabled people in them are transitioned into other, somehow-better programs; instead, they simply lose access to that affordance and sit at home with no stimulation. Great job, gang.
  
  By the way, the reason such facilities deprive some disabled people them of autonomy is because their condition makes autonomy deeply dangerous to them.
  
  What’s incredible about this attitude is that we are now 60 long years into a national experiment with deinstitutionalization that almost everyone acknowledges has been a disaster but which has never really been reversed. I’ve already written here about John F. Kennedy’s Community Mental Health Act of 1963, and I don’t want to go over it in detail again. The short version is that, inspired by admirable concern for the mentally ill, the Kennedy administration spearheaded a bill intended to tear down our state institution system and replace it with a system of community mental health centers; this proved disastrous because while the state institutions were indeed dismantled to a dramatic degree, the community mental health centers were never built. (Please try to remember this the next time the government institutes an unfunded mandate.) And the results are plain to see: sick people wasting away in institutions was tragic, while sick people wasting away on subway cars and in alleyways and under bridges is both tragic and dangerous for the sick and the well alike. Institutional responses to disability issues will always be imperfect and certainly can be much better. But the constant scapegoating of those institutional responses by activists has done precisely nothing to actually help the living conditions of the severely disabled.

• Probably doesn’t do anybody any favors to compare being trans to having a disability, right? I don’t want to belabor this point, but Rosenbaum explicitly compares being a conjoined twins to being trans, as one of the Schappell twins was, and I… don’t think that’s a good idea. I just can’t see how it helps anybody, disabled or trans or both, to muddy those lines. Yes, there are analogies you can make about various kinds of difference and how society treats them. But if I wrote a post here with the headline “Being Trans is Like Having a Disability,” I don’t think it would go over well, nor should it. George Schappell was trans and that’s fair game to talk about in a consideration of his disability, but it seems straightforwardly unhelpful to me to lump his gender identity in with his disability under the broad umbrella of “difference.”

And it’s difference that, I think, needs to really be pulled apart here. Because Rosenbaum is guilty of a kind of slippage that has become very common to disability talk: conjoined twins are normal when normal is a desirable thing to be and not normal when normal is not a desirable thing to be. It’s reminiscent of one of the default images of disability discourse in the 21st century, an autistic person who wants their autism to not result in any special treatment or consideration whatsoever, except in those moments when they think their autism entitles them to special treatment or consideration. It’s the era of “my condition is not a disability, now give me accommodation for my disability or you’re a bigot.”

Throughout, Rosenbaum suggests that normalcy is a bad thing, arguing that the pursuit of normal has hurt the rights of conjoined twins (including through surgically separating them, which she disdains) and of trans people. She goes so far as to mock the Hensel twins for their performance of normalcy; no word on whether it’s possible that they’re acting that way because that is what is natural or comfortable or best for them. That “normal” is not a status to be pursued or lionized is a matter of holy writ in many corners of the disability activist world. And yet you’ll note that it’s also considered a terrible insult to suggest that the disabled are not normal, that to call them abnormal or different or unusual is also assumed to be offensive. I would argue that this is internally contradictory - if you reject normalcy as a goal state then you should embrace abnormality - but this is one of many arguments in this domain that I’ve clearly lost.

We might also consider what it really means to be physically not-normal. Being conjoined is of course indisputably not normal in the sense of being different from the large majority of people, but I suspect that despite what disability activists might say, most conjoined twins are probably looking to live normal lives to the extent that they can. The trouble is that being conjoined is a very physically dangerous state; the NIH says that the survival rate for all conjoined twins is 7.5%. In contrast, 60% of separated conjoined twins survive for a significant period following separation. No doubt there’s a powerful selection effect there, as those who are separated are already those most likely to survive. But you can also understand why separation is not, in fact, simply a matter of enforcing normalcy on conjoined twins and instead often a matter of saving their lives. Rosenbaum mentions that George suffered from spina bifida. While the population of conjoined twins is so tiny that it’s difficult to say, it seems likely from sources I’ve read that conjoined twins are more likely to have spina bifida, and they’re definitely more likely to have physical deformities more broadly - not deformities in the sense of failing to fulfill some arbitrary social standard but deformities in the sense of causing serious physical health impairments and discomfort. “Not normal” has consequences even if we dismiss its socially normative elements.

Funnily enough, Rosenbaum quotes Lori Schabbell in saying that she did not want to be separated from her twin because “I think [that’s] messing with God’s work.” Perhaps belief in obedience to God and resistance to normative judgment are not so easily synthesized.

I suspect that in fact a good portion of the disabled community writ large wants exactly to be normal, to receive normal treatment, to live normal lives. I suspect that very many of them want elevators and braille and closed captions and a legal doctrine of reasonable accommodation so that they can better achieve normal existence. And I further suspect that the disability activist class has embraced the rejection of normalcy in large part because that class is largely made up of people with the least-debilitating, most-manageable conditions, who suffer little from being not-normal and therefore have far less reason to aspire to normal experience than the average disabled person. I would argue that an essential part of evaluating the claims of a disability activist is to assess to what degree their condition has rendered them unable to live without severe restriction or discomfort. It’s not that, say, the self-diagnosed autistic Harvard student with big ideas and an unflinching attitude doesn’t have anything useful to say or isn’t really disabled. (I mean, they may not be, but who’s to say.) The problem is that most people with disabilities are a) not activists and b) do not confront disability through abstract and deracinated concepts of societal respect and normative judgment but rather through the painful experience of navigating the world with physical and mental impairments (disabilities, problems, disorders, less good things) that hurt them. Meanwhile, we live in a culture where diagnosis increasingly collapses into yet another stab at identity. And the loudest tend to be the ones who have the ability to slip back into normal when they want.

Rosenbaum writes, “The twins, though, did not seem overly concerned about whether others understood them.” Good for them, and RIP. I wonder if it will ever occur to Rosenbaum that her entire piece is a monument to her desire that the Schabbells be understood in a particular way - her way.