on absences & beginnings, of a sort

I haven’t been blogging much, lately. I’ve wanted to at times – the ideas have been there, the impetus to say something – but I’ve bled it off in Twitter threads rather than coming here, because that’s felt easier. Blaming the pandemic is convenient insofar as it’s largely true, but it’s also not the whole story; I was already struggling to blog before it started, and once it did, there wasn’t much bandwidth for considering why. We’re still in the pandemic now, almost (god) three fucking years later, for a variety of reasons that make any sane person want to walk into the sea if considered too closely, and things are still bad, but they’re also a different, slightly more hopeful flavour of bad, or at least more resigned, by which I mean we can go outside now and see people and get vaccinated, but – well. Well.

Anyway, the point is that, pandemic aside, I’d been having a rough time of things re: mental and physical health since, oh, let’s say 2012, which timeline not-so-coincidentally lines up with getting pregnant and having a child, who is now five days off from turning nine (!) and is in every respect a wholly wonderful person. It’s just that, as boring and gross and as gauche as certain people think it is to mention What Pregnancy Does To The Body (and hence to the brain), it’s actually quite a lot, and when some of those people are doctors who think that discomfort and sadness are a sort of AFAB baseline to which giving birth should natively acclimate you, such that raising any medical issues without, in their eyes, an obvious cause is just a hypochondriac complaining, it’s hard to get those things diagnosed, let alone fixed.

So: let’s say you’re me, a genderqueer-leaning-slightly-more-masc-than-hitherto-realised person who, prior to pregnancy, has been keeping all those feelings in a careful mental box without ever quite acknowledging them. All of a sudden dysphoria is a Real Goddamn Thing, because even more than your body changing, you’re suddenly being publicly, consistently, insistently gendered in ways you never have been before, and you realise oh, I really don’t like that, but feeling sad and gross and confused is, again, considered a fairly normal part of pregnancy, so it takes a couple of years to sort that all out, and in the interim, you contract a nasty viral infection postpartum that leaves you feeling shitty for months – and again, you are not listened to, not about the tiredness, discomfort and not-rightness in your body and certainly not about the excruciating pain that comes with breastfeeding, except to be told that you must be doing something wrong and either way just to push through it – until you finally collapse in a fever and have to be hospitalised for a week on powerful IV antibiotics.

Eventually, on your own recognizance – because, again, no one is listening to you, or at least, no one who’s a doctor – you do some research and determine that, regarding breastfeeding, you have an atypical presentation of Raynaud’s Syndrome, which is why it feels like someone is slowly pulling a hot wire out of your nipple when you feed your child (breast is best, the nurses say repeatedly; just push through the pain, are you sure you’re latching him properly? no? well, just keep at it, don’t switch to formula). You take this finding to a doctor who, for a miracle, agrees to prescribe you the relevant medication, and the pain goes away for a blissful week before you get a plugged duct and are once more in agony, at which point you switch to formula and, finally, are able to relax.

But your body still doesn’t feel right. You’re fatigued, not just tired but bone-pressingly exhausted all the time, so that some days you can’t get out of bed; it feels like there’s a giant hand physically pressing into the mattress, insisting that you need to lie down even when you already are. Your back starts to hurt. You explain this to doctors, but the best they can do is shrug and suggest it’s purely a mental health issue, as though your depression is making you hurt and tired instead of your hurt and tiredness making you depressed, and you don’t think that’s right, but you have to try something. So you go on antidepressants – a mild dose, of a drug you later find out is being discontinued in places because of its many unpleasant side-effects, with which you soon become intimately acquainted. They help a little, but the fatigue remains. Everything is hard.

You do more research. After a while, you wonder if the viral infection fritzed your immune system on its way out, as sometimes happens, making you more prone to inflammation. Tentatively, you ask your doctor to prescribe some anti-inflammatory meds. The doctor obliges; you take one, and have more energy than you’ve had in the four years since your child was born. Briefly, beautifully, you think you’re cured. But still, the tiredness comes back, stronger and worse, and now your back is hurting all the time, and one day it just goes twang! and leaves you barely able to walk for a fortnight. You blame the terrible Ikea couch you’ve been working on and try to sit more at a desk, which is uncomfortable in a different way, and keep on doing your best.

By the time your child is six, you’ve moved from England to Scotland to Australia to America and are now thoroughly tired of being tired, to say nothing of having doctors in four countries all shrug at the apparent vagueness of your daily, life-inhibiting tiredness and say there’s nothing to be done, all while implying you’re making it up. You think, all right: either this is a weird autoimmune condition that I can’t do anything about, or it’s something really simple and obvious that we’ve somehow missed. You rack your brains and come up with a single possibility: perhaps the only dietary change you made since becoming a parent – drinking soda in place of alcohol while pregnant, which became drinking soda daily thereafter – might be responsible. It feels like a hail Mary – bourbon and coke was your go-to pub order for years; if soda was a problem, surely you’d have noticed before? – but there’s nothing else to try. So you go cold turkey on soda, have two days of dizzying withdrawl symptoms, and then –

The fatigue is gone. Absurdly, beautifully, completely, gone.

Dazed, you do some googling. Apparently, it’s relatively common for pregnancy, which has a big impact on the immune system, to leave you with new allergies that you never had before. You learn that a certain type of caffeine intolerance, while not really referred to as an allergy, nonetheless falls under this umbrella, and that it can cause fatigue, as your body no longer processes caffeine as a stimulant. You have been poisoning yourself into misery for six years without anyone realising. You are furious; you are vindicated, that it wasn’t all in your head. To celebrate your newfound energy, you spend the whole day cleaning the house, bend slightly to look out the window at the end of it, and slip a disc in your lower back. The next day, you can’t walk and have to be stretchered down from your third-floor bedroom to a waiting ambulance – stretchered upright, because the stairs are too narrow for you to lie down. The pain is worse than childbirth. You go straight to hospital. It’s a week before you can walk again.

Recovery is slow. There is physical therapy. Months pass. You’re in pain every day, but (you think) manageable pain. By the start of 2020, you’re ready to go to the gym again, and have just gotten into the habit of it when the pandemic hits. The pandemic is all-encompassing and terrible; your child is in first grade when virtual learning starts and in third grade before he returns to a physical classroom. In 2021, both you and your husband suffer the loss of a parent and are unable to travel to be with family because Australia’s borders are closed. You watch their funerals over zoom; both times, the internet briefly cuts out.

Near the end of 2021 and with a newfound awareness of your mortality, it occurs to you that, two years after slipping a disc and five years after starting antidepressants, you are still in daily physical pain, while your mental health is good. You did ask for a chiropractic referral a few months back, but the doctor wouldn’t give you one: physical therapy only, they said, but the physical therapist never returned your call. The doctor who prescribed the antidepressants is in another country, while your current doctor is hard to get an appointment with even when there isn’t a pandemic. You do some research about going off your particular brand of antidepressants: the side-effects you’ve been living with are becoming steadily more pronounced, more unpleasant, and the more you research, the harder it is to understand why you were put in this particular medication in the first place, given the seeming gulf between its designated purpose and your original symptoms. The depression itself was caused and exacerbated by the now-understood fatigue, which is no longer an issue, and your dose is small enough that tapering won’t be noticeably better than going cold turkey. You decide to take the risk.

You go off antidepressants, and you use the money inherited from your father’s passing to pay for a chiropractor.

Withdrawal symptoms last just under two weeks and are mostly manageable – weird, but manageable. You brace for your mental health to crash, but it never does. Instead, your body gets stronger and your head gets clearer, and as you start to read more quickly, easily and voraciously than you have in years, you realise suddenly, angrily, that this vital part of yourself – your ability to read, to focus on words – had been badly impacted by a medication you should never have been put on in the first place; were only really prescribed because nobody was willing to figure out the source of your actual problem.

And then you go to the chiropractor, who takes one look at your spine, x-rays you to be sure, and shows you how, when you were pregnant, your pelvis twisted within your body, tilting up and back like a crooked bow-tie, steadily imbalancing your whole body. This is why your lower back has been hurting for years; why you slipped a disc so badly; why, even though you did everything your physical therapist asked of you, the pain never went away. You almost break down in tears in the chiropractor’s office, but manage to save them for when you get home. You begin a schedule of adjustments to put your bones back where they should be.

A week into 2022 – a month before your son’s 9th birthday – you wake up without a lancing pain in your hip for the first time since 2019.

It’s been nearly a decade since I first fell pregnant. My health has been impacted by it every day since then, both mentally and physically. I’m coming out of it now, I think – I hope – but I’ve thought that before, and each time, there’s been some other issue lurking in the woodwork. I love my son dearly; I am furious at the broader medical establishment for leaving me to fumble around in the dark, alone, because my quality of life was not held to be important if the symptoms impacting it didn’t have a quick, obvious, commonplace solution. I have been reticent to talk about going off antidepressants on my own as a positive thing, because even when they’re working properly and perfectly prescribed, they can still have unpleasant side-effects, and it’s easy to think you’re better when you’re not, and it’s always better to consult a medical professional, and and and – but still, I was prescribed a medication for a condition I did not have, in lieu of trying to determine what I did have, and it briefly helped the symptoms without touching the cause, and made my life miserable and hard to an extent I’m only fully realising in its absence, and I can read again now, without feeling like I’m forcing my eyes through glue, and I need to be able to say so.

The fact that I achieved anything professionally during this period is, the more I think about it, miraculous, or perhaps a testament to my own bloody-minded reliance on fiction in general and fantasy in particular to carry me through life. I want to blog more, and hopefully will do so, but I find that I’m having to unlearn a habit of flinching from my own ambitions. For so long, I’ve had to curate specific conditions in which to read, to write, to work, because if I attempted to do so otherwise, I’d run up against a wall of exhaustion and fail, and that sense of failure – of wanting to do a thing I love, but finding myself unable to – has left me inhibited, like a crocodile stunted to fit the undersized pool in which it’s kept. There are so many books I’ve picked up and struggled to read in the last few years, not due to any fault in the writing, but because my brain has been lagging, muddled; I want to read them now, but still, there’s this terrible, paralysing fear whenever I reach for one that the fog will come back, an invisible wall to smack me out of my progress. I feel the same about writing, especially here – but I’m trying. I’m going to keep trying.

My next book is coming out this year – my first since 2017 – and I’m terrified. I love this book; it’s just that I’ve got all this leftover terror of being too tired, too far away, too not-enough, and that makes it hard to remember that somehow, amidst all the terrible everything of the last half-decade, I managed to not only write a thing that I love, but get it on track to be published. Part of me is paranoid it’ll all somehow be taken away before it ever hits shelves, which I know is irrational, but I’m working on that, too.

Anyway. This is all to say that, while I haven’t been blogging much for a while now, I’m still here, and I’m trying, and I’m hopefully getting better, which is really the most that any of us can aspire to. It’s about to be the lunar year of the tiger, which is my year and therefore exciting, and frankly at this point, I can use all the positive omens I can find, so I’m leaning into it, mentally. And whoever’s reading this, I hope you have – or are having – a good new year, too. We could all do with one.

What Depression Is

The thing about depression is that even though you know – or hope you know, when your thinking moves beyond reason – that there’s a difference between it and you, it’s very, very good at persuading you otherwise.

Depression is insidious, laying quiet siege to the deepest foundations of brain chemistry – mood, motivation, memory – and steadily repurposing them as weapons against yourself.

Depression is a one-two punch, first making you feel incapable of enjoying the many things you love, then branding your fear at trying them (lest the fear prove true) as laziness: a self-fault, rather than yet another symptom.

Depression is a weight on your chest from the moment you first wake up, pinning you to the mattress with the realisation that nothing you could do today will possibly matter or make you happy, so why not just stay where you are?

Depression is sleeping either fourteen hours or four out of every twenty-four, and still feeling equally tired.

Depression is struggling to distinguish between apathy, selfishness and self-care while knowing they’re sometimes the same.

Depression is not so much wanting to die as wanting to press a button that makes everything stop, but there’s only one button that does one thing, and the more you hurt, the harder is it to remember that pressing it can only take your pain at the gross expense of transferring it to everyone you love.

Depression is an all-encompassing fear of failure: fear that your success is either insufficient, meaningless or fundamentally invalid; fear that there’s no point in trying; fear that you’re incapable of doing anything at all, and always were, and always will be.

Depression is thinking you might not be a real person, after all.

Depression is an absence of emotional object permanence – if your friends and family aren’t expressing affection right now, then they must feel none – coupled with a deep discomfort whenever you’re offered praise and reassurance (as you clearly don’t deserve it).

Depression is telling your child, “Mummy’s sick today.”

Depression means looking for tiny victories: taking a shower, making lunch, laughing.

Depression means walking each day as if across fragile, cracking ice that covers a roiling dark.

Depression means finding your own purpose in impermanent things and states of being, over and over again.

Depression means hanging on.

Depression means hanging on.

Depression means that every day doesn’t have to be a good one, but perhaps today might be.

Depression means moving a mountain when you throw off the covers, running a gauntlet to get dressed, a marathon to get outside.

Depression means breaking your heart, your resolve and your limits in the hope that, like a fighter’s knuckles, the microfractures will steadily heal you stronger.

Depression means a signal beaten back by noise, but your brain is a broken radio and your heart is the hand on the dial, turning and tuning for music in static, for bursts of speech that say I’m here, I’m still here.

The thing about depression is that I have so many words in me, so many wants and so much will, but my body is broken, my brain is part of my body but I am my brain in a way I’m not my stomach or elbows or aching ribs, and my brain is broken, my brain is trying to fix itself, my body is trying to heal a wound that isn’t a wound because my pre-installed virus scanner reports that there isn’t an injury here, just an old, inferior floor model; my body will not execute the commands I can’t route through my broken brain: there’s a barrier there, a pane of glass between me and the way I ought to feel about books and fish and Wednesdays and the smell of petrol; there’s a barrier between how I ought to feel about the way I’m feeling and how I’m feeling; I’m ripping away at my mental lantana almost as fast as it grows back, but the deficit is full of thorns and weeds running riot in overgrown places; I wish I could riot; I wish I could convert the way I feel in dreams to the suffocated waking hours spent with my eyes cracked open and stinging like two spoiled oysters, but the thing about depression is that it’s a civil war where you’re fighting both fronts in the battlefield of your broken body: each backfired nerve is a gunshot, and I don’t want to salt and burn the earth like a demon’s grave or an enemy farm, but what does that make me afterwards? I ought to lie down, depression says, but darling, these white bones were sown in bloody soil from dragons’ teeth, and though the marrow aches at night, at least

I can still feel.

 

Empathy Is Not A Disability

In news that should come as a shock to exactly no one, I can be kind of an asshole. What may come as a shock, depending on how long you’ve known me, is that I’m arguably less of an asshole now than I used to be. In my teens and early twenties, I said and did a lot of things I now find abhorrent, sometimes out of carelessness and not knowing any better, sometimes as a result of having internalised a bunch of toxic bullshit, but sometimes just because I was being an asshole. And the thing about being an asshole – or one of the things, anyway – is that, even when part of you knows exactly what you’re doing and why, there’s another, louder part that doesn’t give a shit, or which conveniently chooses to reserve your shit-giving capabilities until such time as being an asshole is definitively proven to correlate with Having Fucked Up. Being human is not an exact science, and some things can only be learned the hard way, by making a wrong call and gauging its wrongness in retrospect.

Consider the following small act of assholery, performed when I was sixteen:

During a conversation with a close friend – and for the life of me, I can’t remember the specifics of the conversation; only that we were talking about another, mutual friend who’d been having a hard time – I said, in a somewhat offhand way, as though it were obvious, “See, you’re more sympathetic, and I’m more empathetic. You see what’s happening to [friend], but you don’t really feel it the way I do. We’re just different like that.”

Part of me really believed this; or at least, believed it sufficiently in the moment, in the context of that particularly complex relationship, to have said it out loud. Nonetheless, even had it been an entirely accurate judgement – which, for the record, it wasn’t – saying it like that was still a dick move. I can’t even call it a backhanded compliment, because in my mind, it was very clear that empathy was the more desirable trait. I was rather asserting a form of moral superiority over my friend: my kindness is better than your kindness, my understanding of people more intuitive. The irony of making such a claim in a knowingly hurtful way wasn’t wholly lost on me, but I felt slighted by her, and so couched a negative judgement in language which pretended an objectivity I didn’t remotely feel.

My friend was visibly irritated by the remark; hurt, as I’d secretly wanted her to be, and forced onto the defensive. I don’t remember the rest of the exchange, but that moment has stuck with me. Even though I knew the comparison was an insult prior to speaking, it wasn’t until afterwards that I really understood what it meant to have said it anyway. I’d been an asshole, plain and simple: the opposite of empathetic, at least where she was concerned.

Reading Amy Sterling Casil’s recent SF Signal guest post, Special Needs in Strange Worlds: We Are All Disabled, therefore, this incident sprang instantly to mind. Says Sterling-Casil:

I have a severe, lifelong disability that could have cost my life on several occasions. It’s the reason I write what I do and am who I am. But it also means I can’t write the kind of thing you’re often presented with as reading material.

What’s my disability? I’m 5’6″, pretty much fit, active and healthy. Decent eyesight for an old lady. Okay hearing despite numerous loud concerts and shows during my youth. I don’t even have cancer or heart disease after smoking like a fiend nearly all my life. My liver even functions, although it shouldn’t.

I’m very fortunate.

But I hear you. Even when I don’t want to. I feel you. Even when I don’t want to and shouldn’t. I am empathetic. That isn’t the same as “sympathetic.” Many who are like me don’t make it out of their late teens and early 20s because of associated risky behaviors.

That sound you hear, dear reader, is my gritted teeth grinding together.

Let me put this bluntly: empathy is not a disability. Even if I take Sterling Casil at her notably unsourced word and accept her premise here – that empathy, as a specifically defined condition, is a direct, causative (rather than correlative) factor in the suicide and/or death by misadventure of young people – that does not make it a disability. Depression, along with various other mental health conditions and disorders, can be a form of disability, but whether we define it as such depends largely on who “we” are and our reasons for doing so. According to the UK government, for instance:

A mental health condition is considered a disability if it has a long-term effect on your normal day-to-day activity. This is defined under the Equality Act 2010.

Your condition is ‘long term’ if it lasts, or is likely to last, 12 months.

‘Normal day-to-day activity’ is defined as something you do regularly in a normal day. For example – using a computer, working set times or interacting with people.

By this definition, I am – or have been – disabled, and yet I have never identified as such. Partly, this is because there’s an enormous cultural stigma around the acknowledgement, diagnosis and discussion of mental health problems as, well, actual problems. Even during my worst depressive episodes, it would never have occurred to me to think of myself as disabled. It’s a relative of the same prejudice which biases us towards assuming that disabilities are necessarily visible things, like missing limbs or striped canes: if a stranger can’t tell there’s something wrong with you, this logic goes, you must be totally able-bodied. Note, too, the wording: able-bodied, as though disability doesn’t apply to minds. But while I’m all for a more lucid, open dialogue about mental health stigma – or many such dialogues, even – it would be counter-productive to insist that anyone who fits the above definition (for instance) refer to themselves as disabled, regardless of their own beliefs or preferences.

From a purely pragmatic standpoint, there’s enough anti-disability sentiment in the world that, for many people, being open about an “invisible” disability can have real consequences: the loss of a job or promotion, for instance. Words, too, can have a powerful impact on our sense of self depending on what they mean to us and – crucially – the circumstances of their application. For instance: I identify as queer, both because it’s a useful shorthand for expressing two facets of my personhood (bisexuality and genderqueerness) without requiring that I specify either, and because, growing up, it wasn’t a word I ever heard used as a slur. But for other people, that’s not the case, and the fact that I’m happy to self-identify as queer doesn’t mean I’m going to foist that label on someone who thinks of it as an insult. By the same token, however, I don’t appreciate being told, as happened recently – and by a straight person, no less – that it’s offensive and wrong of me to call myself queer, because it was once an insult. (This person, who was in all other respects a charming, lovely individual, literally fled the room rather than continue the conversation when I suggested that, as I was talking about myself, perhaps I should have some greater say in the word’s applicability than he did.)

All of which is a way of saying: if identifying as disabled is going to cause someone more problems, practical or emotional, than it solves, then I support their right to avoid the term without accepting that the concept of disability must therefore, of necessity, have negative connotations in all cases. The diagnostic applicability of a word is not the same as personal acceptance of it, and in keeping with the vital Hippocratic sentiment of first, do no harm, I’d rather err on the side of the individual.

But, as it happens, I do disagree with Sterling Casil: because while I might, on the basis of personal experience, accept the idea that empathy can be a correlative factor in depression, and is therefore potentially relevant to individual disabilities, I do not for a red hot minute believe that empathy alone, as described by Sterling Casil, is a separate disability. Sadness is not the same as depression, no matter how intensely we feel it, regardless of where it comes from. Sadness can be part of depression, certainly, but on this point, I’m putting my foot down: the two words are not interchangeable.

I first started to think – maybe you’re not just “sensitive,” Amy, maybe you are truly different –when I was at the Denver Worldcon in 2007. Wow, almost 10 years ago! I ended up as the “expert” on a panel on what I’ll call gene therapy…

Afterward, a young man came up to me, as if I was some kind of expert. This scared me; I soon realized it was he who was scared.

“Do you think they’ll come up with a cure for autism?” he asked.

“It’s possible,” I said. “A lot more likely than for something like Down Syndrome even though there is no single cause for autism.”

 My son Anthony was born with Down Syndrome. This young chap would never know that, nor would he care if he knew.

First: the only reason “this young chap would never know” about Sterling Casil’s son – assuming he doesn’t read her post now, of course – is because she didn’t tell him, not because of his autism. I don’t fault Sterling Casil for declining to share such a personal piece of information with a complete stranger, but I fail to see how his ignorance is somehow remarkable when she was the one who opted not to remedy it.

Second, and far more importantly: the assertion that the man “would [not] care if he knew” is, quite frankly, so much offensive, inaccurate bullshit. Dear Amy Sterling Casil: making a snap judgement about a stranger’s capacity for compassion on the basis of their autism doesn’t make you “sensitive” and “different”, especially when you uncritically replicate the assumption in print – it makes you an asshole.

The young man wouldn’t meet my eye. He said, “My wife and I both have autism. We want to have children but we don’t want them to have it.” Uncharacteristically for someone with autism, he touched my arm.

As Jim Hines has already pointed out, not everyone with autism is touch-phobic. This is, again, a bullshit judgement.

He was so very frightened!

And this, right here, is the point where I saw red. Because, look: okay. People have different writing styles. And maybe, if I’m being very charitable, this sort of construction is part of Sterling Casil’s; not having read her before, I wouldn’t know. But to me, everything about this simple statement screams paternalistic condescension, and thereby betrays the awfulness of her assumptions. This isn’t a calm judgement, but an exclamation: he was so very frightened! The use of the double qualifier, so very, instead of just one or the other, and especially when followed by an exclamation mark, is a construction you commonly find in children’s books, not in reference to grown adults. It’s minimising language, the kind of thing you can imagine being said of Tom Kitten or Timmy fallen down the well: he was so very frightened! And then there’s the absolute narrative certainty of it: he was, not he seemed or he looked. Nothing in Sterling Casil’s previous description of the man speaks to visible expressions of fear: contextually, it doesn’t feel like the right word at all.

Maybe it’s just a literary failing: poor sentence construction utterly unaffected by subconscious bias about what autism is and how it functions. But somehow, I doubt it.

“There’s a reason God made autism,” I said. I had already come to believe this was true.

“I don’t believe in God,” he said.

No. Okay? No. This is an asshole thing to say – a dick move of the highest fucking order. It doesn’t matter if Sterling Casil believes it to be true: if she really felt the man was “so very frightened” of his own autism, of the mere prospect of passing it along, why on Earth would she think he’d find that assertion comforting? Never mind the declarative, false assumption that the man shared Sterling Casil’s faith sufficiently to be comforted by it in the first place: he’s asking about a cure, and you’re telling him God doesn’t think he needs one? Wow.

Here’s a thought: if you can’t set aside your personal faith, or lack of same, in order to comfort someone with different beliefs – or worse, if it never even occurs to you that this might be the best approach – then maybe what you’re feeling isn’t empathy, but arrogance.

Some time later, I realized. He came up to me because of who I am, and said what he said, because of who he was. And my response was made for the same reasons.

I’ve read these sentences about forty times now, and I still can’t decide if they’re meant to imply that the entire exchange was preordained in some sense, or if it’s just a pointless acknowledgement of the fact that our personhood necessarily impacts our actions. Either way: um.

Autistic people have massive gifts. They are able to do things, think, and see the world in amazing ways. One of my favorite films, one which we view in some of the classes I share with students, is The Temple Grandin Story, starring Claire Danes. Temple’s wonderful teacher, portrayed in the film by David Strathairn, tells her mother (also wonderful, played by Julia Ormond), that Temple is different from other children. Both mother and teacher agree that Temple is: “Different, not less.”

On the one hand, yes: being autistic doesn’t make you lesser than anyone else, and it sure as hell doesn’t preclude being talented. And certainly, an autistic perspective can have some decided advantages over a neurotypical one, depending on the person and the context. (I say can rather than does, not because neurotypical is better more often – it isn’t – but because different people are always going to have different strengths and weaknesses in different settings, regardless of attribution.) But on the other hand, I can’t quite shake my suspicion, especially given the film comparison and her earlier, stereotypical assumptions, that Sterling Casil is romanticising autism as the diagnosis of savants.

This conversation with the autistic young man was one of my turning points. It was then that I realized my perceptions really were different from most others. I had the opposite of autism. And even more: we are all different.

Again, as Jim Hines has already pointed out, empathy is not the fucking opposite of autism. That some autistic people might not express their empathy in ways that are easily recognised by neurotypical persons doesn’t mean they don’t feel it, or that autism is somehow defined by a lack of it. The fact that Sterling Casil implies this to be so is doubly concerning when you consider how quick she is to associate an absence of empathy with sociopathy:

I suppose what bothers me most, now that I do understand these things, is that there is so little value in our society to the humane core that is inside nearly all of us. I see clearly, and hate, the sociopath who pulls our strings, making us dance to their wicked puppet rhythms. How many stories, how many films, how many TV shows do they get? It’s exhausting.

Right. So, just to be clear: some people are absent a “humane core”, which Sterling Casil associates with empathy, but which “the sociopath who pulls our strings” presumably lacks.

UM.

A few psychologists call people like me empaths. I brought up “sociopaths” because like empaths, sociopaths also readily perceive the feelings and motives of others. Unlike sociopaths, empaths have no desire to harm others.

I would be deeply interested to know which psychologists Sterling Casil is referencing here, as her sentence construction leans on this vague reference to academic authority in order to support her subsequent claims about sociopaths. Given that sociopathy, contrary to the assertions of Steven Moffat, is itself a highly flawed, disputed and arguably outdated term, I’m inclined to view this whole claim with a suspiciously raised eyebrow.

Some of us experience barriers and risks because we are so easily influenced by the feelings, ideas and emotions of others that we may lack a strong sense of self.  We are also highly susceptible to substance abuse and other forms of risk-taking behavior. There’s little to no scientific research done on us and nobody but we few survivors genuinely understands how difficult it is to be this aware of others and their feelings and motives.

The bolding and italics in that last excerpt are mine. Self-diagnosis of mental health conditions is one thing; inventing an entire condition seemingly out of whole cloth is another. The language Sterling Casil uses to describe empathy in the first half of this paragraph is both vague to the point of uselessness – what the fuck does that mean, “some of us experience barriers and risks”? – and worded to sound like an actual, academic definition; and yet, in the very next sentence, she admits that no such thing exists.

One researcher who has published a significant body of work is Dr. Ron Riggio at Claremont McKenna College. Ron believes that empathy is an essential leadership trait.

A quick Google search about Dr Riggio yields, among other things, a 2011 article whose concluding statement would seem to be the exact opposite of Sterling Casil’s claims about empathy – namely, that it’s a discreet and specific disability. Having spent the rest of the piece discussing the three different types of empathy invented by someone called Mark Davis – Perspective-Taking, Personal Distress and Empathic Concern – Riggio concludes by saying:

In reality, we all have some level of each of the types of empathy. The key is to understand the ways that we are empathic with others, and to realize the strengths and limitations of each type of empathy.

So… not what Sterling Casil is asserting, then. In fact, I can’t find a single piece of Riggio’s that categorises empathy as a disability at all, nor can I find any such claim made by another academic. No, Sterling Casil doesn’t explicitly argue that empathy as disability is Riggio’s thesis, but he’s the only authority she mentions in her entire piece, and as such, I’m inclined to think she’s gone looking for piecemeal opinions to support the idea that her particular brand of empathy makes her special, rather than acknowledging that empathy is a thing that most people have, but which they express in ways not necessarily identical to her own.

It seems to me that assuming strong empathy to be a unique, special and rare quality possessed only by a “few survivors” is a failure of empathy and imagination both.

Even a hundred years ago, those with autism were so isolated and so misunderstood that the chances they would have the freedom and safe lives to build, make and create were slim and none.

Again, where the hell is Sterling Casil getting this from? I’m not denying that many people on the autistic spectrum have both struggled and experienced discrimination at various points in history as a result of their condition, but as the term autism has only been in use since 1911, discrimination against the autistic as a specific group is a very recent phenomenon. More likely, as per the earlier example of different skillsets and perspectives being strengths or weaknesses in different contexts, their treatment was much more contingent on intersectional markers like gender, race and class (as, indeed, is still the case): a wealthy male aristocrat with idiosyncratic behaviour was much more likely to be accepted on his own terms, for instance, than a poor woman who did likewise. This generalised assumption of victimhood is so historically unsophisticated as to be fundamentally inaccurate – just another way in which Sterling-Casil badly misunderstands her subject area.

Our lives have changed and grown because of the FLK’s (Funny-Looking Kids) and FAK’s (Funny-Acting Kids). They are precious, valuable, essential.

What in the actual fuck is this nomenclature doing in a supposedly pro-disability piece? By all means, let me know if I’m missing something – if these are terms affectionately coined and used by those with disabilities in reference to themselves – but on the face of it, situated in the utter mess of this article, my reaction is one of stunned disbelief.

Humanity will deserve to leave this planet and go to the stars, and we’ll be able to survive and thrive—because of people like me.

On the basis of this piece, I beg to differ.

(This is an asshole thing to say. I’m aware of that. Let’s call it a little contextual irony.)

How can I possibly say we are all cripples?

Oh my god.

When a physically able person sees someone in a wheelchair and feels “sorry” for them, they should consider the different perceptions that wheelchair enables them to have. They see and hear things those who stand and walk do not. They get to live a different life. Different, not less.

I am not physically disabled, nor have I ever been. But I’m pretty fucking sure that, however positively or negatively one feels about using a wheelchair – about whether it’s something you “get” to do, as opposed to a thing you have to do – it doesn’t grant you magical powers of intuitive perception. Rather, I’m given to understand, the things one hears in a wheelchair that other people don’t aren’t secret universal truths, but condescending assumptions about their capabilities, ableist slurs and abuse, a whole lot of height-related awkwardness, and patronising platitudes from people who want to use their existence as an inspiration. Everyone lives a different life, but that doesn’t mean there’s any utility in erasing the complications that particular disabilities, and our attitudes towards them, frequently present. Acknowledging the fact that people in wheelchairs can live rich, full lives on their own terms doesn’t mean there aren’t wheelchair-specific problems still to navigate, or that it’s wrong for some people in wheelchairs to wish they didn’t need them.

The opposite of feeling instinctively “sorry” for a disabled person isn’t assuming they’re totally happy with their lot in life and the unique perspective it affords them, but is rather to treat them like a fucking person: that is, to not make judgements about how they might feel about themselves – or anything else, for that matter – on the basis of first appearances and their membership, visible or otherwise, of an enormously diverse group.

I wrote one well-known story called “To Kiss the Star,” about a young woman named Mel Armstrong, wheelchair-bound, blind and spastic with a heart defect. Mel won the lottery to be housed in a hardened spaceship —to get a perfect, near-immortal cyberbody—and travel to the stars. Hot damn! Mel doesn’t want to go. She’s in love with John, a handsome young man who’s been visiting her out of a partially misguided idea of charity. John’s been lying to Mel, as people will do. By the end of the story, it’s clear who the real cripple is. Not Mel – she can and will go to the stars.

The “real cripple”? A minute ago, that was all of us – but now, all of a sudden, the word has acquired a decidedly negative inference. John is the “real cripple” – the person who’s ultimately wrong and defective, despite being able-bodied – and do I really have to explain why that particular construction is still situating disability as a bad thing? UGH.

As Toni Morrison perhaps did not say, but I believe her to have said, so in my world, she has said, “I write in order to find out what I know.”

As Amy Sterling Casil perhaps did not say, but I believe her to have meant, so in my world, she has said, “I don’t know what the fuck I’m talking about.”

Now, after writing this, I understand why I am so little satisfied – these days, even disgusted – with fictional stereotypes. These stereotypes are an imposition of a limited, false image or idea on others. I like to think that some day, these falsehoods will no longer be sold as “entertainment.”

Stereotypes like autistic people being bereft of empathy and disabled persons having emotional superpowers, perhaps? DO GO ON.

Differently-abled or abled like the majority on the ability spectrum, we can learn how to use the senses we do have better. Just as those who have lost their sight experience greater perception in other senses, and just as those who use wheelchairs see the world from a different perspective.

Dear Ms Sterling Casil: being blind does not make everyone Daredevil, because not everyone who loses their sight does so in the same way, at the same time, under the same auspices. Also: enough with the wheelchair perspective! It’s starting to feel perilously like a height joke.

Viewed with the strongest perception that we can have at any given time, there is not one of us who is not a “cripple.”

And when everyone’s super, no one will be.

Also, uh. You realise there’s still a need to make specific accommodations for people with specific disabilities, right? That the issue doesn’t magically disappear if you randomly declare everyone disabled?

To overcome our mutual disability, it isn’t about the so-important “I” or “me.” It’s about “we.” It isn’t about what you want, it’s about who and what you are as well as everybody else.

We’ll never get off this planet, much less do the part life has given to us, if we keep on thinking about our isolated selves.

In other words, nobody should talk about their particular problems or specific needs, because treating disability as an amorphous, generalised concept is much more useful than acknowledging those it affects as individuals.

Money’s one thing, Vernor. Getting over our damn selves and feeling what others feel and respecting that: quite another.

YOU DON’T SAY.

Here’s a moral for you: Assholes can still exhibit empathy in other contexts, because being empathetic doesn’t magically stop you from being an asshole – even and especially when discussing your own empathy.

Now, if you’ll excuse me, I’m going to go shove my face in a pillow and scream.

ETA: I’ve gone through and changed Sterling-Casil to Sterling Casil, as I’d evidently been spelling my interlocutor’s name with a hyphen that doesn’t belong there. Just because I think she’s wrong doesn’t mean I can’t get her name right.