Disability

My son’s language is made of a bundle of sounds that do not exist in the Spanish that we speak around the Río de la Plata. He repeats syllables he himself invented, he alternates them with onomatopoeias, guttural sounds, and high-pitched shouts. It is an expressive, singing language. I wrote this on Twitter at 6:30 in the morning on a Thursday because Galileo woke me up at 5:30. He does this, madruga (there is no word for “madrugar”, “waking up early in the morning” in English, I want to know why). As I look after him, I open a Word document in my computer. I write a little while I hear “aiuuuh shíii shíiii prrrrrr boio boio seeehhh” and then some whispers, all this accompanied with his rhythmic stimming of patting himself on the chest or drumming on the walls and tables around the house.
My life with Gali goes by like this, between scenes like this one and the passionate kisses and hugs he gives me. This morning everything else is quiet. He brings me an apple for me to cut it for him in four segments. He likes the skin and gnaws the rest, leaving pieces of apples with his bitemarks all around the house. He also brings me a box of rice cookies he doesn’t know how to open. Then he eats them jumping on my bed. He leaves a trace of crumbles. Galileo inhabits the world by leaving evidence of his existence, of his habits, of his way of being in the world.
When we started walking the uncertain road to diagnosis, someone next of kin who is a children’s psychologist with a sort of specialisation in autism informally assessed him. She ruled (diagnosed, prognosed) that he wasn’t autistic, that we shouldn’t ask for the official disability certificate (because “labels” are wrong, she held), and that he should go on Lacanian therapy and music therapy on Zoom —now I think this is a ready-made sentence she just gives in general to anyone.

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A while back I posted that I was writing a book about Covid. Today is its official launch date!

I’m super excited about and proud of this work, because I don’t believe we’ll ever be able to capture people’s experiences during a global pandemic the way collecting data about it at the height of initial lockdowns allowed us (my research team) to do. Below the fold I explain what the book covers. In short, it has material of interest to those curious about misinformation, social media, and digital inequality.

Also, how awesome is this cover?! I can’t take credit for it, but am super grateful to its designer Ori Kometani for capturing the experiences of the time so well.

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In any society, certain needs have to be catered for, either socially or privately. At a minumum, those unable to work, because they are too young, too old, or too sick have to be cared for. Of course, they can be cared for in ways that are better or worse for them, but caring there must be, and that is going to take someone’s time, labour, and money.

I’ve been thinking about these rather obvious facts over the past few days partly because a report came out showing how many people – mainly women – are being driven out of the the UK workforce by the need to care for relatives, given that the social care system is broken. At present, there are also a lot of people out of the UK labour market either because they can’t work due to COVID and its after-effects, or because the underfunded National Health Service has been shattered by the pandemic and they can’t get the treatment they need in a timely fashion for other health problems they have. If left languishing, the skills these people have will atrophy. Many of them will never work again.

At the same time, our soon-to-be-former Prime Minister has been pushing her “pro-growth” agenda, which largely consisted of tax cuts, and her now-former Home Secretary mocked the anti-growth coalition of “Guardian-reading, tofu-eating, wokerati”, of which I am proud to consider myself a member.

Their central assumption is that growth is best served by a low-tax economy and that public spending needs radical reduction, with the fat-cutting exercise of the last twelve years now to be extended to the bones. Well, I hope readers can see the problem. You don’t get growth by pursuing policies that effectively force people to give up productive work either through their own sickness, or in order to care for other people. If these needs are not met socially, they will be met privately, and, again, because it bears repeating, in ways that are disproportionately damaging to women.
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So this article (Autistic Sex Offenders Often Don’t Realize They’ve Broken The Law. Should That Matter?) was on the front page of Slate yesterday, and I thought, “this is so Slatepitchy that I should blog about it! Tomorrow though, because the Investigation and Discovery channel has it’s 4,000th show in a row about some brutal murder in Indiana, which I must watch, and also my mania requires me to clean the side of the stove that’s 1/2″ away from the kitchen counter, by forcing paper towel soaked in bleach spray down there with a boning knife and really leaning into it, and also I’m fundamentally a failure as a human being and can’t accomplish the most trivial of tasks.” (To be scrupulously fair, when I was nearing the end of the stove thing I said to myself, “self? Self old buddy old pal old frienderoo? Maybe just put the knife down and back away, because by the pricking of my thumbs, you’re going to be going at something with Q-tips any time now, and it’s already midnight.” (Ironically, this would have been good advice for the murderer as well.) “Also, if you’re so obsessive about these things, why isn’t the house cleaner generally? Could it be that you’re a failure as a human being?” And then I went to sleep lmao I had insomnia.

However, comma, I’m blogging about it now, better late than never, my life is a long series tasks before which I quail in needless fear as if they were copperheads looking at me with their glittering eyes, etc. This article has passed beyond #slatepitch to genuinely disturbing. And this is the reason that they took it off the front page altogether, and it can now only be found using google. [Update: I clicked on an article and this appeared in the sidebar. It was definitely not on the front page this morning.] The premise is that autistic people should get preferential treatment when they commit sex offenses such as stalking or possessing child pornography, because they don’t really know what they are doing. It’s as insulting to autistic people, really, as it is to common sense and basic morality.
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Many scholars, journalists and commentators have written how in many (all?) European welfare states government-based systems of support and solidarity are being restructured, scaled down, or eliminated. One common ideological basis in all those reforms is the view that people should be made maximally self-reliant and, if need be, families should support other family members in need – hence this would justify a cut-back of state involvement. The European welfare states have always been something most Europeans have been proud of – the idea that civilisation implies that we collectively care for the most vulnerable people in our political community, and that we collectively pool risks that, if left to the market, would lead to some people paying much more to secure those risks than others.

In several countries, the reforms are targeting the income- and labour market support systems for the disabled. In the Netherlands, this has now taken a really ugly turn, as was very well described in an article (in Dutch) by Gijs Herderscheê and Sheila Sitalsing, which was published today in De Volkskrant. [click to continue…]

Here’s an important article by Aiyana Bailin, who argues that the recent fidget spinning fad shows something disturbingly:

Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people

So here we see disability discrimination at work. For some neuro-atypical and disabled people, stimming is a way to reduce stress, and indeed also to concentrate better. But often they are told not to do this. The same holds for other forms of behaviour that neurotypicals consider ‘abnormal’. The fidget spinning just shows how much of a social convention, and hence form of domination, those social norms regarding ‘normal behaviour’ are, and that at least some of those conventions are biased against the needs of some groups of disabled people and neuro-atypicals.

Earlier this week, I came across another example. A therapist told me that social skills training for autistics entails, among other things, that they learn to look at the eyes of another person when talking to them. But why would that be a desirable good? What, except for some social convention, would make it that it is considered inappropriate not to look at the person you’re talking to? Why can’t we just accept it to be as it is – that for some people, it’s easier to have a conversation if they do not have to look you into the eyes?

But the good news is that the article by Aiyana Bailin gives us an opportunity to learn something. I suspect it will eye-opening to many of us. It’s an example of how disability discrimination works, and examples may well be more effective in showing the working of disability discrimination than some abstract theory. Yet it’s an example of a more general problem that Bailin wants to draw our attention to:

But the power structure is still there. There’s still a rigid hierarchy of who gets to decide which behaviors are normal or pathological. There’s still a societal subtext that tells people who are different “be less like yourself and more like us.” We need to work on that.

This is really for Straightwood, because I know the deeply meaningful and fully explained nature of this video of 50 Cent dubbed over a Jehovah’s Witness exhorting deaf students to abstain from masturbation will appeal to your keenly honed and not in any way homosexual aesthetic.

What I am curious about in the Singer/infanticide/ending the life of the disabled vein is, what do those who are totally opposed to every form of infanticide think about anencephalic babies (and babies who have similarly non-survivable, severe birth defects)? I don’t think that, as a formerly pregnant person who has given birth to healthy children, my opinions on these questions have any extra merit, but I do think others not so situated may share my opinions without feeling so strongly about them, or in the same way. Perhaps the situation calls for some epistemic humility? The terrifying prospect to me, and to many mothers, of “late-term” abortion bans, is that pregnancies which are terminated after 20 weeks are almost all wanted pregnancies in which something horrible has occurred or been discovered. (And, in those cases where the baby is unwanted, there are almost certainly serious problems in the woman’s life that have led to the delay in getting an abortion sooner.) So, in a situation of supreme horror, the fetus might die, but the mother might be forced to carry the dead fetus inside her and have labor induced, to struggle in pain and blood to bring her dead baby into the world. She would feel the liquid inside her, and the lax ligaments, and all the other things she felt in pregnancy, but she would know the baby was dead. I have heard of mothers knowing right away. So close to you then, infinitely close, but infinitely far, and a rotting thing now, a poison for the rest of your body. So awful.

My first pregnancy was easy and wonderful. I felt and looked glowing, and although I was in labor for more than 40 hours (remind me not to do that again) I gave birth vaginally to a healthy girl who latched onto the breast just a few minutes after she was born, and fed well and naturally. In my second pregnancy I had unexplained bleeding starting at 19 weeks. Bright pink fresh blood in the toilet bowl. I thought my heart would stop. I thought her heart had stopped. They couldn’t figure out what was wrong. I was in terrible pain (I often am; but it seemed like she was tap-dancing on the worst bit of me.) I kept bleeding on and off. I knew how many movements she was supposed to make in an hour and I counted, and counted, and counted, hour after hour, so scared, and then another hour. The doctors were determined to deliver her surgically as soon as they felt she was cooked up right, so, 37 weeks. It turned out to be nothing serious, placenta previa (the organ grew over the cervical os, the opening to the birth canal, blocking the baby’s egress.) She was fine.

But sometimes when the doctors check, they find that the fetus, which has appeared to be developing fine, has no brain at all, that the blackness inside her skull on the scans is only water. This is not even a fetus, really–certainly not a future infant. It will never feel pleasure at a mother’s touch, or pain from being pinched by a crib mattress, or see anything, or hear anything. It is empty. Laws that would force a woman to stay pregnant and nourish and grow that wrongly-made creature inside her, and to suffer the agonies of childbirth, and to bring forth this…not-baby–laws like that are torture. I would go mad. I would try to abort the fetus myself. I would try to kill myself. I would want to be put to sleep then, there, in the doctor’s office, and wake up, not pregnant, and with a little coffin to bury my hope and love inside. With ashes inside, only, because I would want not to look, but I would look, and I would always wish I had not.

But let us say an unjust, oppressive, Christian regime forces me to endure, and to deliver this severely deformed baby. Does anyone think we should use artificial life support to keep the baby alive? Almost all fetuses of this type are stillborn, and those that are not usually die on the first day of ‘life.’ Even the Catholic Church has some hand-waving about letting God’s will take its course. That is, they are not insistent on providing hydration and nutrition–no one even considers artificial respiration. Reading on it, three children have lived a year or so. There are pictures of course, and now I wish I hadn’t looked at them, and I am so sorry, the poor little things, and so sorry for the parents. For the mothers! When I think of those oscillations inside you, feeling movements you didn’t make, the mysterious gliding of blood-wet surfaces over each other in the absolute black, the not-you inside you…what if you knew in the end there was nothing? Some kind of seasickness of death? At the last you would be holding a newly hatched chick, naked and grey and dead, grey and jerking with dying? But back to the matter at hand, we all think a form of infanticide is appropriate here, right? No one’s on team ‘drastic measures for resuscitation?’ Artificial respiration for 80 years, for something that can never feel you hold his hand? A rough golem on whose forehead no glyph has been inscribed? So isn’t there a small number of real-world, continuously-occurring cases in which we are all pro-infanticide?

UPDATE: so misinterpreted! Obviously my fault also. I didn’t jump in to give Singer crucial moral support. I’m not totally sure how I did…I guess I’m implying all his critics are disingenuous and have parked themselves at the top of a slippery slope with some dubious wedge. I apologize to sincere Singer-critics for insulting their position in this way. That wasn’t actually what I was trying to do at all. I was genuinely curious. There was a case maybe eight years ago now, but I can no longer find it in the welter of anti-abortion and pro-abortion articles, in which a woman’s 24 or even 26-week-old fetus died, and the laws of her state required a waiting period before you could get a late term abortion (Texas IIRC?). The removal of a dead fetus is done via dilation and curettage, i.e., via abortion. So she had to go talk to some doctor, and then go stay by herself in a motel with her dead baby inside her for two days. She wrote about her experience and I remember thinking, I don’t know if I could live through two days of that. A responsible, thoughtful doctor would have deemed the dead fetus a threat to her health and her ability to have future children and had it removed on those grounds, but in this particular case, it was a Catholic hospital and none of these things happened. So I did mean to say, I think there are a number of infants born each year whose lives everyone agrees cannot go on in any way. That doesn’t mean that–HAHA! now everyone is obliged to accept all Singer’s positions; I was honestly curious, not mock-curious, and I honestly don’t know what all Singer’s positions are. But I also meant to describe to people who haven’t been pregnant the terror of something going wrong, and how you hope you would be a good enough person to accept your baby any way she came, but you fear you’re not brave enough, not really, not truly brave enough. And that as long as she was inside maybe you could pretend it would be alright somehow? But even then there is only one feeling that is ever like this, of having something inside you that is alive, that isn’t you, that you are waiting for, and how would it be if you were waiting for nothing? That’s all. I really don’t know enough about Singer’s positions to arbitrate on any of these questions; I was just thinking, we need to hear from severely handicapped people who were written off as a total loss before we know whether he can be right. We might also be interested to hear from mothers. And I’m only the mother of perfectly healthy babies! That’s it. I’m not laying down my life for in-group sacrifice.

Moonshine
All that I have to say, is, to tell you that the
lanthorn is the moon; I, the man in the moon; this
thorn-bush, my thorn-bush; and this dog, my dog.

‘Ah, so it’s come to this, I see! Ms. Waring wishes to share with us her love of Geto Boys. This is a bridge too far. Really, though. These are the Let a Ho be a Ho people here. Is this some sort of feint after which other marginally less implausible opinions will seem more plausible?’ (hint: ish.) Oh look everyone! It’s Unsung, a Behind-The-Music style show about black musicians, with a whole episode about Geto Boys!

What’s that? You say that it is, possible worlds and all, conceivable that I might have found something you were less likely to watch/listen to, but I would have had need to strive hard? Look, you goobers listen to podcasts about Alan Greenspan’s tragic and shamefully-lauded legacy in US monetary policy. Multiple podcasts of such wise. You listen to podcasts with Dan Drezner in them! (Sorry Dan, but you’ve never laid down beats like this.) It would hurt you real bad to hear about a concrete way in which racism in American society is applied to obscenity and threats of violence, would it? And hear some killer tracks? Scroll on, then, one wouldn’t want you to dirty your hands. SIKE! No, motherf%*#kers! Just open a tab and listen; it ain’t like it’s going to kill you. Though you will be missing interesting and humorous visual effects. “But Belle, I hate all rap music!” OK, this is nonetheless rather historically interesting, you may find, about the spasm of violence in the late ’80s and mid ’90s in the US that seemed like it would never end, and the real fear that hip-hop induced in white listeners. This white dude who was covering the hip-hop beat at Source magazine at the time is probably the single whitest person who has ever lived, including Immanuel Kant. His last name is Soren! When he tells you, “people were scared of this music!” you think, “you wet your pants when Paul Anka came on the oldies station!” Nah, but, in fact he’s extraordinarily well-informed etc. “But Belle, I only care about the history of Neolithic Northern Africa!” Oh really! How fascinating! Well, you’re off the hook then, but you should be getting about your business, I must say. This is rather a lot of slacking already. Oh hey five minute version!
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A colleague who lost his teenage son due to a traffic accident 3 years ago, told us about the ‘black halo’ which remains above his head, and which only others who have lost a child are able to see. I do not doubt for a second that this is the case – that people who have not lost a child are, perhaps a very few exceptions aside, not able to truly understand what it means to lose a child, and how it changes the person you are. It reminds me of a friend who lost her father about a year after I lost mine. She had been very supportive when my father was terminally ill and died, but told me after her father died that she had no idea how hard it was until she experienced it herself. Good intentions are simply not enough to understand certain experiences.

I think it’s not just with experiences, but also with varieties of ‘differences’ and with social practices, being ill, and other features of human life. It is not just the death of someone near and dear that we have a hard time to understand if we haven’t experienced it ourselves; or what it means to have autism, or to live with and/or care for someone who has autism (in my experience, most people don’t understand, despite what they believe themselves about their understanding); or what it is to be constantly subjected to racism. I am confident that I have no clue what it means to grow up in abject poverty, or to live through a civil war, or to be the victim of domestic abuse.

My worry is that this category of experiences, differences, practices, and other features of human life that we cannot understand without first-person experience, is much larger than we generally tend to assume. And that as a consequence, we believe that we know much more than we actually do know. And, as a further consequence, that we too often are wrong in our judgements of aspects of the lives of people significantly different than ourselves.

Somehow it strikes me as wise, and possibly even as a precondition for social justice, if we would rehabilitate epistemic humility at the core of our educational and social practices.

Maybe Hyde Park on Hudson only really makes sense from a British point of view. It’s right there in the title – “Hyde Park on Hudson” reminds you that there’s another Hyde Park, “on Serpentine,” if you like, in London – and if you didn’t catch it from the title, Queen Elizabeth says it in the middle of the movie. “Why is it called Hyde Park? Hyde Park is in London. It’s confusing.”

The movie itself would be confusing if you don’t recall that Hyde Park in London, although technically crown property, is now overrun by the public and indeed home to radical speech and protest, and if you don’t concede that this description also applies pretty well to Hyde Park in New York, formerly a crown colony, and home to Franklin Roosevelt, then – in 1939 – seen as a radical tribune of the American people.

The two kindred parks yield two kindred stories.

In one, FDR’s distant cousin Daisy has an affair with him, believes she is unique, then discovers he has other lovers. One of them, FDR’s secretary Missy LeHand, tells Daisy that she will learn to share. And she does; in the end, happily.

In the other story, George VI (“Bertie”) and his queen, Elizabeth, come to the American Hyde Park to visit the President and court his support for Britain’s defense. It is the first visit by a British monarch to the United States, and a dark hour for Britain. But Bertie hits it off with FDR, feeling he has found a father figure in him, and declaring (in one of several bits of invention) that the two nations have forged a “special relationship.”

In case we miss the point, Daisy also says she has a “special relationship” with Franklin Roosevelt. Bertie’s special relationship with FDR is no more unique than Daisy’s. The movie ends on a high note, but we know that one day, soon, the British will learn they must share his promiscuous affections; by Bretton Woods and Yalta, FDR was courting Josef Stalin.

Perhaps, like Daisy’s bond with FDR, Britain’s tie to the US is not less special because America is so profligate with its affections.

Historians are supposed to quarrel with the film’s depiction of Roosevelt. I don’t think it’s necessary; the Roosevelt in the movie isn’t the human, historical FDR – he’s America personified – smiling, inscrutable, shameless, exploitive, powerful, popular. Bill Murray doesn’t do an impersonation – though he gets the smile right.

But there are essential things about Roosevelt the film does show, more economically and elegantly than I imagined a work of fiction could.

He got along because he made people feel good about themselves – after their meeting, Bertie bounds up the stairs, two or three at a time.

And he let people think he had not made up his mind, when in fact he had – he talks ambivalently about an alliance with Britain, but by the end of the movie we realize he has meant to make it happen, and has worked hard to make it happen.

And people did look to him, craving his attention, trusting him, even though his interior life was finally inaccessible.

The meeting between FDR and Bertie is a really terrific scene, as are all the scenes between Bertie and Elizabeth – but especially the one when they discuss the web of FDR’s promiscuity, and conclude with relief they did not bring Lilibet. There are some gorgeous scenes of the parklike Hudson scenery, humid, rolling in thistle capped by pale blue skies stacked with billowing clouds. It is a beautiful film to look at, and to think with.

Since today is movie day at Crooked Timber, I thought I’d share. If you haven’t yet seen Michael Haneke’s Amour then you probably should make the effort. Emmanuelle Riva’s performance as Anne is one of the most brilliant pieces of screen acting I’ve ever seen. On the other hand, this is an almost uncompromising portrayal of aging and dying and of incomprehension across the generations with the end in plain view. When we left the cinema, several people outside were in tears and when I started to talk about the film I found I couldn’t without starting to dissolve myself. Some audience members sat in their seats staring at the screen for a while afterwards, and some of those were quite elderly. So if you go, and, as I say, it is a great work, do so knowing that you’ll probably be somewhat upset by the end. As you should be.

I’ve always been a great fan of the documentaries made by Louis Theroux. I think he’s an incredible filmmaker – almost a genius how he is able to portrait people and make documentaries that stick to the mind. Most recently, Theroux has made a series called Extreme Love, in which he visits families who are affected by severe autism and by dementia. The first one, on autism, was screened on Dutch TV last Friday, and can be seen on your computer screen for the next 60 hours on this website (Original with Dutch subtitles).

The children with autism featured in this episode are all situated on the severe end of the spectrum. I haven’t done any literature review on this, but my hypothesis is that it is very difficult to truly understand for people who do not have a disability, have never had a disability, or who never cared for people with disabilities, how it is to be disabled or live with someone disabled. We need narratives in order to understand, and preferably narratives not merely composed of words, but also of sounds, images, pictures — things that are able to convey not just factual knowledge but also meanings and emotions. Work like the one produced by Louis Theroux and his team offers us a unique opportunity to get a little closer to a world we may never enter. I may be incredibly naive, but I believe that if more people would regularly watch documentaries such as this one, the world would be a better place. If that’s true, then that would be another reason to watch this – apart from witnessing a genius at work.

Last summer, Jamie, Janet and I were hanging out in this New York apartment we’ve managed to split with a few friends. We got a call from Jamie’s cousin Trevor, who lives on the Upper West Side, at 102nd Street and West End Avenue; Trevor proposed to visit us and hang out with Jamie for the day. And he told us that he’d take the subway by himself and walk from 59th and Lexington (we were on 62nd Street and 1st Avenue). When Jamie heard that, he turned to me in astonishment, saying “Trevor will take the subway by himself–and he has disability!”
 

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