No, We’re Not All Disabled
ETA: SF Signal has removed the post and posted an apology.
ETA2: Casil has also posted an apology on her website.
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I’ve really appreciated the Special Needs in Strange Worlds column at SF Signal, but the most recent entry bugged me a lot.
“We Are All Disabled,” by Amy Sterling Casil, strikes the wrong note for me right from the title. Because in neither the commonly-used nor the legal sense of the word are we all disabled.
I struggled a lot five years ago when we were meeting with the school about my son’s IEP, which included a goal of having him participate in activities with “non-disabled peers.” It felt like a punch to the gut. Through the gut, even. On the other hand, there are day-to-day tasks my son struggles with as a result of his autism. There are things his peers can do that he’s not yet able to. Some of those challenges are because our world and culture are set up for neurotypical people. But formally recognizing his struggles and challenges was the first step to helping him learn to overcome them. My son would not be getting the support he needs if the school system simply took the approach that we’re all disabled.
Everyone has limits and flaws, yes. That doesn’t mean everyone is disabled. Claiming otherwise dilutes both the terminology and our efforts to make the world more accessible to those with disabilities. Who needs accessibility policies if we’re all disabled?
Casil describes herself as empathetic, saying this is “a severe, lifelong disability that could have cost my life on several occasions.” I’m not familiar with the idea of being empathetic as a disability, so I’m hesitant to say too much until I’ve learned more. She says she sees more, and that being empathetic is like having “opposite of autism.” She goes on to talk about an encounter at a convention, where a member of the audience came up to ask her a question after a panel:
“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.
I hope my son never feels this way. I think he’ll be able to be a wonderful father, if that’s what he wants. But it’s that last sentence that really made me stumble.
“Nor would he care if he knew.”
Why not? Because autistic people lack empathy?
Bullshit.
Autism is not the lack of empathy. I’ve watched my son cry over other people’s pain, both in real life and in fiction. I’ve read and spoken to other people with autism who clearly demonstrate empathy and caring. Why would you assume someone with autism wouldn’t care about your son’s condition?
Empathetic is not the opposite of autism. The myth that autistic people lack empathy or emotion is not only untrue, it’s actively harmful.
Casil continues:
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. He was so very frightened!
“There’s a reason God made autism,” I said. I had already come to believe this was true.
First of all, not all people with autism are averse to physical contact.
And while I don’t want to argue with anyone’s personal belief, as someone with diabetes and depression, please don’t ever try to tell me there’s a reason God gave me these conditions. It’s not helpful to me.
Obviously, autism is something that’s both personal and important to me. The way it’s referenced and described in this piece feels ignorant. Not deliberately so — I believe Casil has the best and noblest of intentions. But I wish it had been written with a better understanding and awareness of autism.
Later, Casil returns to the premise of the title, saying:
How can I possibly say we are all cripples? Compared to the reality of – not the universe – just our own planet and the interconnectedness that is life on Earth, the perceptions of even the fittest human are as limited as a blind albino cave salamander … 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.
My wife has had so many knee surgeries I’ve lost count. She also has a degenerative spinal condition. Some of the different perceptions and experiences she gets to have are staying inside because she can’t take our dog for a walk in the winter anymore. Taking a ridiculous number of pills each day to help her function. Never getting a decent night’s sleep, due to chronic pain. Knowing that even something as simple as moving a coffee table to vacuum could put her in the emergency room.
Her disabilities are not a thing to be pitied, but they’re damn well not a blessing. Nor are the challenges she faces in any way equivalent to what a non-disabled person goes through in an average day.
I think I get some of what Casil was trying to say. I know and like her, and I’m not trying to attack her. I agree that pity isn’t a terribly helpful or productive response to someone in a wheelchair, and that we shouldn’t see people with disabilities as “lesser.” Likewise, empathy and understanding are important. Acknowledging and respecting other people’s feelings and experiences is important, and we desperately need to do better.
Unfortunately, by misrepresenting autism and trying to generalize everyone as “disabled,” I think this essay fails to recognize or respect people’s different experiences. Instead, it feels more like the essay erases many people with disabilities, as well as their challenges and needs.
And by arguing that we’re all disabled, I think it undermines the spirit and purpose of Special Needs in Strange Worlds.
Jess Faraday
February 4, 2016 @ 4:54 pm
Wow, that was really well said.
I enjoy your books, but I really, really enjoy and appreciate your well-thought-out and well-reasoned views on so many things.
Kerry aka Trouble
February 4, 2016 @ 4:57 pm
The phrase “[someone] has autism” should not be used. It’s not something that you have like a cold and then it goes away. The phrase that SHOULD be used is “[someone] is autistic.” My son is also autistic.
*climbs down off soapbox*
mjkl
February 4, 2016 @ 4:58 pm
Thank you.
Lenora Rose
February 4, 2016 @ 5:09 pm
Well said.I tried to read her piece, but had to stop at the naked mole rat paragraph. We don’t judge whether a human being is or is not disabled by comparing them to other animals and their self-awareness. We compare them to other humans and what they can do.
I have wondered whether some forms of autism aren’t as full of advantages as disadvantages but I wouldn’t tell someone I didn’t know and who was struggling with it that it was a gift.
I also disliked the way she summed up what she seemed to perceive was the main thrust of other articles on disability and diversity, which seemed to imply they were all self-promoting.
I can imagine empathy as I understand it to be a possible disability, and even more, maybe what the medical establishment considers empathy presents differently from how i imagine it. But overall, she didn’t seem to be very empathetic — as I understand the term — in the article. Maybe I missed something by stopping reading.
Linda Dunn
February 4, 2016 @ 5:10 pm
Bless Amy’s sweet heart. It’s in the right place but she’s entirely off on this one. She’s confusing strengths and weaknesses (which we all have) with normal expected human capabilities (the middle of the bell curve) and disabilities that restrict one’s ability to achieve that norm.
Since the age of 3, when I developed a disability, that disability has restricted my ability to engage in normal human interactions. It restricted my ability to learn in a normal classroom setting. It restricted my ability to engage in normal social settings. It restricted my ability to find and obtain employment. It eliminated many potential career possibilities. It caused additional expenses that cannot be avoided unless I want to forfeit some aspects of the “normal” human experience.
I feel I’ve been slapped in the face and my years of struggle and accomplishments dismissed as insignificant. IOW, I feel insulted.
Fraser
February 4, 2016 @ 5:14 pm
Silly me, I thought this kind of idealization (not the exact word but best I can do just now) of people with disabilities was long gone. I’m familiar with the idea of autistic individuals living on some kind of higher spiritual plane, but I haven’t heard that argument for paraplegics (and I could have done without it).
And “we are all disabled” is as useless and meaningless as “we are all addicts” or “everyone has privilege.” It’s true I can’t see into the ultraviolet like bees, but that doesn’t make me disabled in any way that makes useful sense.
Lenora Rose
February 4, 2016 @ 5:14 pm
I’ve seen different people – both on the spectrum and related to people on the spectrum- argue it both ways, actually. I also prefer the “Is autistic” construction but not to the point of dictating.
And someone can have diabetes, which also doesn’t go away. Someone can have two arms, which also shouldn’t, in most circumstances, go away, and are usually considered intrinsic, in the same way autism isn’t just something that is done from outside.
Jim C. Hines
February 4, 2016 @ 5:14 pm
If two autistic people want to say they have autism, I’d be very reluctant to tell them they’re wrong.
Nalini Haynes
February 4, 2016 @ 5:21 pm
I find the premise of “we are all disabled” to be highly, highly offensive. I’ve had people tell me “Oh, I’m vision impaired, I can’t read the bottom line of an eye chart” and the like but these people have never experienced barriers due to lack of disability access and they’ve never experienced disability discrimination. Try losing your job and your career after 10 years of study, work and professional development. Try starting a new career and being refused large print photocopies, a manager at a university saying “I will prevent disability access because you asked too many times” and RECEIVING A DISCIPLINARY CEASE AND DESIST LETTER FROM THE DEAN FOR ASKING FOR LARGE PRINT PHOTOCOPIES AND STANDARD STUDENT ACCESS TO THE LIBRARY.
THAT is disability discrimination. Unless people have experienced these kinds of barriers — like your son, Jim — then they’re not disabled. Disability is a label imposed by society on people who don’t fit acceptable norms. Don’t tell me “we’re all disabled” because, if we were “all” equal in that way, my life would be a hell of a lot different today.
Michael Phillips
February 4, 2016 @ 5:24 pm
It sounds like she has a certain fatalistic version of her faith. It is the least attractive form of any religion for me, and particularly irritating when the holders apply it to things outside of other people’s control.
Grace Alexander
February 4, 2016 @ 5:25 pm
Jim, thank you.
My son is on the autism spectrum. More specifically, he has auditory processing disorder, sensory processing disorder, gross and fine motor skill deficits, social skill deficits, ADD, and so on.
He also has a near genus IQ, had the coping skills of a 12 year old at age 5, reads four grades above his level (He was reading Neil Gaiman’s “The Graveyard” to me last year!) and has a knack for math that sets him at least 2-3 years ahead.
Duncan looks you straight in the eye, is a cuddlebug to the nth degree, and is self aware enough to realize if he skipped his meds – at age 7-8, no less! – when he is having an off day. He’s definitely not autistic in the traditional sense, back when there were six markers and a child had to meet all six for a diagnosis.
He has zero brain to mouth filter, and didn’t at first understand why saying “You are really big!” to someone might be hurtful – to him, it was simple truth, and how could truth be bad? We had to explain that some people ere self conscious about their size, because other people would be mean to them and act like it was a bad thing – but that he was 100% correct that it was NOT.
We also had to work very hard on personal space. Duncan’s need for sensory input would lead him to touch the sweater of the child next to him… to see what it felt like… and then their hair… and then their eyeball… We’ve managed to overcome that hurdle as well, and in the process instilled a complete understanding of “consent”.
Anyway. I rambled a bit. My point, I suppose, is that like *trans, “autistic” has become an umbrella, a “catch-all” and no two kids are alike. 🙂
Jim C. Hines
February 4, 2016 @ 5:29 pm
We’ve had the personal space conversation a number of times as well 🙂 In his case, I think it’s mostly just lack of awareness of his own body, let alone other people’s.
Though we haven’t had any eyeball-touching incidents 🙂
(He has tried on multiple occasions to eat my beard, though…)
Grace Alexander
February 4, 2016 @ 5:48 pm
Ha! Yes!
Interestingly, when moved here to Uruguay last year, the personal space thing was reversed on a lot of us – people here have NO concept, really.
It’s a very touchy feely culture, with many “besos” (kisses on the cheek) for all, even strangers when meeting for the first time!. In the markets and grocery stores people think nothing of mashing their body against yours to squeeze through a small space.
For those of us raised in the extremely “personal bubble” world of the US, it has been a culture shock 🙂 I think I stammered “Perdon!” a million times to people who banged into me until I realized no-one cared.
Grace Alexander
February 4, 2016 @ 5:56 pm
I’ve seen it both ways, and argued it both ways (in order to show that both have merit and that it should really be left up to those affected to choose!)
My son is autistic. He is also cis. He’s straight, so far as I know (statistically he’d be the most likely of our children to be gay, and that would be fine, too.) He’s a brunet, smart, and funny, and kind.
Or you could say he has autism. He has auditory hearing disorder. He has brown hair. He has mathematical aptitude, he has a sense of humor, he has a kind heart.
He’s my son and I love him and he loves me. Which is all that matters. 🙂
Kevin B.
February 4, 2016 @ 6:05 pm
“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.”
This is just so, so stupid. I’ll be sure to tell my wheelchair bound, paraplegic father that he should appreciate his unique outlook on life, which (to use his own words) mostly consists of people’s asses. I’m sure he appreciates the insights offered by never being able to do the things again he enjoyed most in life like riding a motorcycle or the tremendous fun of having to plan his life around his bathroom visits. He doesn’t even goes to social gatherings that involve a lot of standing people, because he doesn’t enjoy looking at crotches and having people talking over his head all evening.
For someone claiming to be especially empathic she sure does seem to remarkably lack the skill to put herself in other people’s situations.
LauraA
February 4, 2016 @ 6:07 pm
I really like the “Intense World” hypothesis for autism. It’s my understanding that neurotypical people filter out a lot more stimuli than autistic people do, leaving autistic people bombarded since infancy with what can often to be way too much to take in. Naturally, there are a nearly infinite number of ways that a person might respond to this situation. For the social world, some people with autism seem to have concluded from a very early age that this realm isn’t very interesting, or is too much to take on, so they generally tune it out; others conclude that it’s very important and can end up hypersensitive to social interactions, like eye contact and conversation, with strategies to regulate how much they have to deal with.
So we then find that many autistic people seem not to be empathetic at all, and maybe not even to care, like on Sherlock. Others are especially empathetic, and can find themselves often experiencing what we psychologists call “empathic distress,” or “emotional contagion,” picking up on subtle signals of others’ unhappiness and taking it on themselves. And of course, because autistic people are individuals, they can be at any place in the continuum between these two, with infinite variations depending on who they’re interacting with and what else is going on at any given time. And neurotypical people move around on that same continuum as well, just with greater likelihood of their strategies being considered “normal” by people in general.
I’m glad you so often take the time and energy to help fight harmful stereotypes, Jim! Thank you!
Mal
February 4, 2016 @ 6:17 pm
Sing it, Jim! Thank you so much for this thoughtful and powerful statement. Ms Casil’s essay upsets me as much as (self-defined) non-disabled persons co-opting the “spoons” metaphor. In either case, something huge and important is diluted to the point where it’s meaningless.
Sean
February 4, 2016 @ 6:23 pm
I just want to say, as a physically disabled person with Osteogenesis Imperfecta [a brittle bone disorder], I am sick of the notion that the term “disabled” or “crippled” is something to tip toe around or fear saying to those who do suffer from any sort of evolutionary state of disability.
Growing up in a wheelchair I was victim of physical and mental bullying every single day. I faced a staff of teachers in my local school who felt the need to treat me as if I must be cognitively slow (lumping disabilities together 101 people) and peers that didn’t know anything about what I faced and decided on their own what my “problems” were.
They didn’t know me nor did they want to.
I don’t know if I’m missing the whole point of these arguments but the fact remains that no one, disabled or not, should compare what they go through to someone else nor be reluctant to admit their own problems. We all have problems and it’s a shame if we try to cover it up out of fear because overcoming obstacles is something everyone will have to do in their life in order to move on.
Not everyone is disabled. But we all possess obstacles.
Sean
February 4, 2016 @ 6:24 pm
And as a side note, I will not stand for someone telling me what I should appreciate or not because of my disability and wheelchair bound life. Yes, I do have some things that other people don’t and have experienced the world in a different way. The point though, is that what lessons I may or may not learn or gifts I have, is for me to decide. I don’t want your pity but I certainly don’t want your assumptions either.
Anne C.
February 4, 2016 @ 6:37 pm
Well said, Jim. My nephew has diabetes and it is terribly trying for his parents and in some respects, him (he was diagnosed at 18 months and has practically known no other life. Of course, he has control issues, but no one I’ve ever met has had a better excuse for having them.) and to diminish their battle by making it equivalent to feeling all the feels and crying easily renders me nearly speechless.
Instead of pretending we understand what autistics feel and hear, I think it’s important to listen to them express it. I’m reminded of a movie that I haven’t seen yet but heard a lot about when Alan Rickman passed away called Snow Cake. It is supposed to be an excellent attempt at representing an autistic authentically. I hope to find a copy… oh! I should check with my library… [runs off to check the library and I.L.L.]
Liz
February 4, 2016 @ 6:42 pm
Thank you for posting this, because my response to that column would have been a long string of swearwords, occasionally interrupted while I paused to swallow painkillers and the other medications I take to manage my disability.
Raven Oak
February 4, 2016 @ 6:50 pm
I agree.
When I’m in crippling pain, the last thing I want is to pretend all is rainbows and unicorns because my unique viewpoint. Belittling the struggles of those with disabilities is, to be honest, insulting. I really hate when people act overly optimistic and try to get others to do the same. It smacks of, “If you only smiled more, your ______ would go away!”
Disabilities suck. Yes, we can try to look on the bright side of life but some days, we need to recognize the suckiness. Not everyone has this struggle. To say they do is a slap in the face to all who struggle. :/
SherryH
February 4, 2016 @ 7:28 pm
Wow. Just wow.
>They see and hear things those who stand and walk do not. They get to live a different life.
I can’t speak to this from the perspective of a wheelchair user, but I’ve heard it said of us blind folks as well, and those with other disabilities. And…no. Just no.
It’s true that since losing my eyesight I’ve become more adept at detecting and processing some sounds and learned to detect a lot of information by touch. So I suppose you could say I have a special perspective on the world. And sure, I’m grateful for that heightened sensitivity. But I’m not sure it makes up for seeing the world as a blur of light and shadow broken by occasional motion.
On a metaphorical level, I suppose you could argue that we’re all blind. But that sort of blindness doesn’t make it nearly as difficult to function in the actual physical world as the kind some of us experience.
Emily
February 4, 2016 @ 7:38 pm
I believe she’s coming from a place of compassion, and using the lately-popular “Be kind, for everyone you know is fighting a hard battle” as her inspiration. However, her post hits me like the “All Lives Matter” folks’ efforts on twitter – stating something that is true in a way that excludes the specific people who are asking that their struggles be recognized.
Thanks for calling this out. No, we’re not all disabled, though we all have challenges, and we should listen to people who are telling us what they need to be equal members of society.
Elise
February 4, 2016 @ 8:04 pm
Thank you, Jim. This was well said.
Iain Coleman
February 4, 2016 @ 8:07 pm
This is the kindest and most generous response any reasonable person could give to that article.
Sally
February 4, 2016 @ 8:07 pm
I think she’s disabled, and it’s in the common sense region of the brain.
I invite her to see how “blessed” her life would be with SherryH’s blindness.
The inability to eat whatever you want because your pancreas will get stroppy, and eventually spending hours on dialysis and knowing you’ll only live if someone else dies and donates their kidney.
The uplifting joy that comes when you want to get somewhere but can’t climb the stairs that are the only access and there’s no ramp for your wheelchair. And while you contemplate that, someone walks past with a lighted cigarette right at your eye level. (And all you see is butts, like Kevin’s father says. Know how obnoxious manspreading is? Now imagine it when those crotches are a few inches from your face, all day long)
Or the thrills of having to go to the doctor every single month without fail to get a new prescription for the pills that make it possible to leave the house twice a week for a few hours — and whoops, that trip to the doctor and dirty look from the pharmacist was one of them. Maybe you’ll cook dinner tomorrow.
The myriad pleasures of having such severe anxiety that you can’t drive and can’t ever go anywhere alone because you’ll need someone trusted to tell you what to do and be ready to hustle you out the door and back home.
Yes, disabled people have a special experience of the world. An incomplete one.
As the elderly ladies from Memphis I knew would say… bless her heart.
Sally
February 4, 2016 @ 8:10 pm
I can see a difference in “is autistic” and “has diabetes”.
Autism is your brain/mind, which is you. Diabetes is your pancreas, which isn’t.
But whatever someone wants to call themselves, I’m fine with.
LJ Cohen
February 4, 2016 @ 8:26 pm
This was very well said.
As someone with AS in the family, I can assure you (and agree with you) that the opposite of Autism is decidedly NOT empathic. If anything, what makes Autism such a struggle to live with is the inability to keep boundaries between one’s emotions and other’s; too much empathy, if you will.
I also come from a background as a physical therapist, and a very helpful way to look at this issue is to understand the differences between impairment, dysfunction, and disability.
Impairments are problems on a biological level. Dysfunction is when those impairments interfere with specific activities. Disability is when societal functioning is impacted.
We all have impairments. I wonder if that’s what Casil was trying to get at. For example, I am nearsighted and have astigmatism. Those are impairments. However, I am not disabled by my vision problems because I have eyeglasses that correct for them. But, I would never be able to be a fighter pilot – which is a dysfunction (if I wanted to be a fighter pilot.)
There are ways to ameliorate disability, both for individuals and society, that may or may not address either impairments or dysfunction. Some impairments can be directly addressed – think surgery to correct a congenital heart defect. Some impairments can be mitigated by equipment or things like universal access, or therapy to teach compensatory skills. A wheelchair may be the difference between going to school and being housebound for someone who cannot walk. The impairment that interferes with their ambulation remains, but they are enabled to function.
Sorry for the pedantic hijack, but I thought it might be helpful for someone.
Why I Try Not to Talk About Things I Know Nothing About | The World in the Satin Bag
February 4, 2016 @ 8:35 pm
[…] Are All Disabled” by Amy Sterling Casil. Jim C. Hines has already written a rather reserved critique on his blog, which I recommend you read. The gist of the post is this: Casil tries to argue that her strong […]
Jim C. Hines
February 4, 2016 @ 9:00 pm
“I think she’s disabled, and it’s in the common sense region of the brain.”
I’d appreciate if we not go there, please. Thanks.
Morgan
February 4, 2016 @ 9:01 pm
Thank you. Your explanation does seem helpful to me and I’ve made a note of it.
Geoffrey
February 4, 2016 @ 9:11 pm
As an autistic person (disclosure: not formally diagnosed, for those to whom that matters): one of the things I find really upsetting is when people put so much faith in their misguided “empathy” about my emotions that they end up ignoring things I have explicitly said to them.
It’s not just that Casil believed in some mistaken stereotype of autistic people as unable to care about other human beings.
It’s that he told her he was married, and he told her he was worried for his future children, and even with ten years to reflect on that incident she *still* didn’t manage to figure out that obviously this guy DOES have some capacity for caring about people.
Later on she did it again: she goes from him saying “we want to have children but we don’t want them to have [autism]” to describing him as “the young man who didn’t want to be a father” (or words to that effect; I didn’t save the original).
Somebody does crap like that to me, it can knock me sideways for a day, throw me into a loop of “how the fuck can I communicate with people who refuse to listen to the things I’m telling them in words?” Even just seeing a stranger do it to another stranger, as here, is significantly upsetting.
Casil, or anybody else who’s reading this: please, when you’re dealing with somebody who’s neuroatypical and/or has a disability: please consider that your best source of information about the person in front of you just might be the person in front of you.
Not something you heard a psychologist say about an entire group of people that might or might not apply to this specific INDIVIDUAL person, not something you learned about the *previous* person you met who has a similar diagnosis, not how you think *you* might feel in this person’s situation. Listen to the unique human being in front of you.
Eleri Hamilton
February 4, 2016 @ 9:18 pm
Oh, this this this… My daughter has a rare genetic disorder, and lives in a group home- because two parents weren’t enough to support her ‘different’ life that includes severe violent outbursts, emotional disregulation and 24/7 supervision. I’m sure she’s *totally* thrilled with ‘just’ having a different life.
Daniela
February 4, 2016 @ 9:23 pm
I’m so offended by this Casil person I can’t even think straight. Being in a wheelchair sucks, and she cannot even start to know what it is like to be me, and how my life is. I’m sick of people trying to diminish disability.
Lee
February 4, 2016 @ 9:41 pm
non-disabled persons co-opting the “spoons” metaphor
Is that an offensive thing? I’m not disabled, but even so there are times when I’ve just flat run out of the ability to cope, or even to think clearly, and I find the “out of spoons” metaphor a useful tool for expressing that. I am certainly aware that I start out my day with many more spoons than a person with a disability does, but they are still not inexhaustible (and I think my daily supply is diminishing somewhat with increasing age). But if my use of that term — as a tool that I know most of my friends will understand — is offensive, I’ll look for another way to say it.
Mal
February 4, 2016 @ 9:55 pm
Okay, the following is my personal opinion. I hope others will chime in.
As a disabled person, I do find it deeply inappropriate. The metaphor is meant to help people who are not disabled understand what it’s like to have one’s life profoundly limited by disability. My disability never goes away. It will never get better. It will only — inevitably — get worse. I never get enough spoons to get through my day. I never get half enough. I never will. I have to choose between bathing and getting the mail, because on no day will I ever have enough spoons to do both. The spoon metaphor is meant to convey something HUGE and also something that does not, cannot, will not ever get better. It’s about life and choices that shrink and shrink and shrink. It’s about a world that fails to accommodate most of your needs most of the time. And an appalling amount of pain, every minute of every day and night.
In my opinion, when someone who has few of those limits and little of that pain and needs to make few of those choices borrows the metaphor in reference to a rough but transitory patch in a life that will soon refer to normal… that’s inappropriate. It disrespects the meaning of the metaphor.
Lenora Rose
February 4, 2016 @ 10:21 pm
Yes, thank you, this is a very useful explanation.
Human flaws and disability: NOT the same thing | A girl with opinions: writings of interest on SFF, comics, and anything else
February 4, 2016 @ 10:24 pm
[…] whole situation is an embarrassment to the SFF community. Jim C. Hines has a great post about it here. This paragraph from Hines’s post spoke to […]
Janna
February 4, 2016 @ 10:24 pm
“Impairments are problems on a biological level. Dysfunction is when those impairments interfere with specific activities. Disability is when societal functioning is impacted.”
FINALLY someone made this make sense to me.
I’ve read about the social model and I hate the idea that since my ADHD doesn’t really cause me a lot of problems in society (not that ADHD-related issues are really able to be accommodated once you’re out of school and not working a regular job) I’m not really disabled. And the word “impairment” seems to belittle the struggles I have every single day to get stuff done (because ADHD is really executive dysfunction, and let me tell you: it sucks A LOT). But “dysfunction”? Yeah, I can work with that.
My brain has impairments in the frontal lobe and a few other places that impact executive functioning, and these impairments cause dysfunction in those kinds of things (and that is everything from making and following plans to directing attention to switching activities to just plain getting started on something), and sometimes those dysfunctions do impact my functioning in society (just not in a way that is able to be accommodated).
Gillian Polack
February 4, 2016 @ 10:26 pm
When I was a child and ill, I was sent to books that were supposed to teach me how to find blessings in everything. I’m Jewish, and those books expected me to be a particular brand of joyous Christian, so I found other ways of dealing that relied on my own underlying world view and my emotional and physical needs rather than on someone else’s ideas of who I should be and how I should handle things.
There’s never been any simple solution, but I still get told to look for blessings and get told that if one door closes another opens. I am still Jewish (unsurprisingly), and the former still doesn’t apply (why should I change my religion, just because things hurt?). With the latter – my life is fabulous and fascinating but (on average) seven doors slam shut for every single one that opens. What I’ve learned isn’t to look for blessings or to compare myself to other people with quite different difficulties. I’ve learned to discover uniqueness and to find out who people are as individuals and get to know them as themselves. One of the most empathetic of my friends is on the spectrum and gives the best hugs in the universe at precisely the right time.
One of my students (I teach a group who each have at least one mental illness) put me on my own right path, when I was thinking of all people the same and give them labels. Struggling does that, for me, makes it easier to see groups and forget individuals. “I am not an adjective,” he told me. And so I teach him, and not the label that got him into my class.
To each person, their own approach. Casil’s approach is right for her, but quite obviously not right for me.
Stewart
February 4, 2016 @ 11:27 pm
I’m guilty of doing this, and hadn’t considered that aspect. I will stop doing it. Thank you for taking the time to educate!
Beth Hudson Wheeler
February 4, 2016 @ 11:43 pm
Very nice. As an autism spectrum mom with an autism spectrum son, I really hate these characterizations — to the extent that about three years ago I wrote a fairly long essay on the fact that austistic people _do_ have empathy, just not an easy anility to read social clues (and a number of other things that aren’t germane to this particular discussion). Those things can be learned – I no longer present as autism spectrum.
I’ve got to say – I don’t know the author in question, but I do question her empathy if she can write something like that.
Beth Hudson Wheeler
February 5, 2016 @ 12:07 am
I realized my last post might have sounded a bit like “it’s all fixable” and didn’t mean that! My experience is my own, not that of others. And if there were a way to have avoided 30 or so years of painstakingly studying neurotypical people so that I wouldn’t keep making the same mistakes over and over, and so that I could be seen as somewhat eccentric rather than outright weird (in a bad way) I would have loved to know it. If I could have passed enough not to have been severely bullied as a kid, or had even known _why_ I got the reactions I did, I could have avoided getting severe social anxiety that continues to this day. Others are not as lucky as me.
Mel Petricko
February 5, 2016 @ 12:16 am
Just another opinion: I have multiple disabilities including cerebral palsy, and I’m constantly educating people of all ability levels about “spoon theory” and encouraging them to use it.
I don’t say this to be argumentative or disrespectful of Mal at all. I only bring it up because my interpretation of the theory is very different. For me, the important idea about having a limited number of spoons is not only because I as a pwd have fewer spoons than my able-bodied daughter. I do, and it’s definitely useful for her to be aware that I do, as in the original context of the essay.
It’s also powerful, in my opinion, when people realize that everyone has an end to their endurance and one of the things being a pwd means is having less endurance. It’s a frame for our experience that they didn’t have before, but they do now. We have all the same tasks and responsibilities and dreams and goals, with fewer spoons to spend on them.
I also like the bonding that grows out of having that short-hand vocabulary. I don’t have to explain, I can just say I have no spoons. /shrugs/
The differences of opinion on language make it difficult even for community insiders. I wish I knew how to solve that part!
Tili Sokolov
February 5, 2016 @ 12:48 am
Oh, wow, I completely glossed over this when I read the thing, but you’re so right. That’s … you’d think just basic editing of her own work would catch this? Wow.
Erica
February 5, 2016 @ 3:05 am
I agree with everything you said here, Jim, and this whole thing is unfortunate, because I think the blog entry really was well meant and was trying to show solidarity with people who struggle with disabilities, but it fell very flat because it missed some points that you and others did a good job of articulating.
I do wonder if the person who wrote this article has had a number of friends who adamantly feel their conditions aren’t disabilities but differences, so she’s struggling to explain this somehow and is overgeneralizing an attitude had by some people with certain kinds of disabilities.
I’ve also encountered people who say that they resent the way people who are fully abled assume people of different ability levels want their difference to be cured, as if they were broken and needed fixing instead of simply being different. They feel they have a unique way of seeing/experiencing the world, not a disability. They want the world to be friendlier to people like them, not to try and fix them.
This is something I’ve always struggled to understand, because I deal with depression, and while it’s a part of who I am and has shaped me in many ways. I’d love the world to be more understanding to people with this condition, but I’d also love a magic pill with no side effects that lifted that fog from my life. But everyone will experience their own situation differently.
For instance:
http://www.theatlantic.com/health/archive/2013/08/understanding-deafness-not-everyone-wants-to-be-fixed/278527/
http://komonews.com/news/local/autism-advocates-to-childrens-hospital-we-dont-want-a-cure-11-21-2015
So while this doesn’t excuse the gaffes in the article, I wonder if this might have been the angle the author was coming from.
Liz
February 5, 2016 @ 3:44 am
There are already lots of terms, at least in UK English, for not having enough energy: ‘not 100%,’ ‘Feeling a bit off,’ ‘I’m knackered,’ ‘a bit under par’ or simply ‘I just don’t have the energy.’
‘Spoons’ is common online but if I walked into our local and said that I didn’t have the spoons to do something today….they’d run to the kitchen and get me some spoons. We already have the words we need.
Hazel
February 5, 2016 @ 5:54 am
But overall, she didn’t seem to be very empathetic — as I understand the term — in the article.
I was wondering whether someone was gonna say this. I’m inclined to agree.
Hazel
February 5, 2016 @ 6:04 am
I am always in awe of how polite and restrained you manage to be when you blog about disability. Your capacity of giving people the benefit of the doubt is impressive and baffling.
Heather
February 5, 2016 @ 7:06 am
I wouldn’t tell someone I didn’t know and who was struggling with it that it was a gift.
Thank you. Telling someone it’s a gift seems like the opposite of empathy.
Jesse the K
February 5, 2016 @ 1:08 pm
More kudos for your well-phrased critique.
While there have been some useful essays in that series, the title stopped me a year ago. Some humans can multiply 6-digit numbers in their heads and some humans need calculators. I can’t accept the concept of “special” needs. If we truly believe disabled people are human beings, all needs are human needs.
Morgan
February 5, 2016 @ 1:46 pm
Calculators are not in the same category as wheelchairs, IEPs, Brailled text, AAC devices and medication. Acknowledging that people with disabilities are human beings does not obviate the fact that there are separate needs for those people. While “special needs” does seem to have different connotations in different contexts, it does point out that the needs of a given group are special. If you wish to say that all needs are human needs, you must recognize that the infrastructure in this country is built for people who fit the default. For example, stairs meet the need of able-bodied people to move from one level to another. People with disabilities of any kind need special accommodations just to get along in the default infrastructure. So, yes, there is such a thing as “special needs.” To my mind, “all needs are human needs” comes perilously close to “all lives matter.”
Empathy Is Not A Disability | shattersnipe: malcontent & rainbows
February 5, 2016 @ 1:49 pm
[…] Jim Hines has already pointed out, not everyone with autism is touch-phobic. This is, again, a bullshit […]
Dan Geiser
February 5, 2016 @ 2:52 pm
I have Aspergers. I have disabled friends and family. I don’t have kids with Autism.
I don’t understand what was so egregious about Amy Sterling Casil’s opinion piece on SFSignal that it needed to be pulled and the Editor who vetted the piece needed to go dark. It seems like a very harsh reaction from many people on all sides of the issue.
Yes, it was misguided. But I think it would’ve been better to leave it up and have a conversation debating its merits.
Sally
February 5, 2016 @ 3:50 pm
This. Leave me my spoons.
“Exhausted”, “really wiped out today”, “need more sleep and caffeine”.
Erica
February 5, 2016 @ 4:29 pm
Some parts perpetuated a myth/misunderstanding about autism–that autistic people lack empathy. I gave up on the article before I got through it, but in a couple places it seemed to me like she was talking about antisocial personality disorder, not autism.
I could see how that would be extremely hurtful and frustrating, even before one gets to some of the other problems.
If they’d left the article, there likely would have been a huge pile-on of people, and the discussion would require constant and rigorous moderation at the very least. Most would want to have a conversation about the misconceptions or talk about how the article made them feel, but it had the potential to devolve into personal attacks, trolling, allegations of the “pc police” kicking in the metaphoric door, and other non-productive discussions that would end up being more hurtful and creating tons of problems for the site moderators. It’s possible the author herself had second thoughts about what she wrote and wanted them to take it down too.
Pam Adams
February 5, 2016 @ 4:44 pm
I like your explanation, and use something similar when talking to college students, many of whom are struggling with or just discovering mental health issues. I point out that my eyeglasses allow me to work through/with my visual impairments, and my special shoes and cane allow me to walk, in hopes of encouraging them to see their mental health needs as just another set of glasses- necessary, not shameful.
willaful
February 5, 2016 @ 4:47 pm
Thank you for this, as well as the post.
Before my week-in-review, a quick political post about disability | Fraser Sherman's Blog
February 5, 2016 @ 4:58 pm
[…] Hines gives a very reasonable, thoughtful commentary on the original, now removed post. Foz Meadows’ response is well thought out too, but a lot […]
skadhu
February 5, 2016 @ 10:06 pm
Re the use of “spoons”, would you think it appropriate for someone suffering from a mental illness such as depression to use the term? Is the key thing that it’s permanent and that you can’t recover from it? (I’ve been given to understand that one can recover from depression, or at least go into remission under treatment, which I very much hope is true.)
Jim C. Hines
February 5, 2016 @ 10:17 pm
Speaking only for myself, I started using the spoons metaphor after my depression diagnosis.
3+ years later, the depression is mostly under control through meds and therapy, but it’s still there, and there are still times I feel it getting hold of me…or I realize I have to stop whatever I’m doing to keep it from getting hold.
skadhu
February 5, 2016 @ 10:50 pm
Thanks, Jim.
Jesse the K
February 6, 2016 @ 7:32 am
I didn’t make myself clear. My point is that our needs are not “extra” or ”optional.”
Too many people interpret “special needs” as “special pleading.” Our needs are part of the spectrum of human needs, because we are not sub-humans.
Disability is natural, not exceptional. Therefore: we have the right to accommodation, acceptance, inclusion.
Beth
February 6, 2016 @ 9:46 am
The author of the article has posted a response:
http://www.amysterlingcasil.com/women/dear-individuals-on-the-asd-spectrum-and-others-i-am-sorry/
Heather
February 6, 2016 @ 10:56 am
It’s a shame that it’s a non-apology.
“I am sorry that my manner of expression indicated …”
“I am sorry that what I said was interpreted to mean …”
She really doesn’t get it.
Weekend Links: February 6, 2016 | SF Bluestocking
February 6, 2016 @ 11:16 pm
[…] (notably less good). Foz Meadows in “Empathy is Not a Disability” and Jim C. Hines in “No We’re Not All Disabled” took on the most problematic elements of the original post, which was just a total […]
Gratitudes and Groans | Dori-Ann Granger
February 7, 2016 @ 2:39 pm
[…] people who write about touchy subjects with sensitivity. On Jim C. Hines’ blog, he wrote a post in response to a post about how we’re all disabled by another author. Not only was his post […]
Morgan
February 7, 2016 @ 2:40 pm
Ah. Yes, I misunderstood. Thank you, that’s much clearer.
Morgan
February 7, 2016 @ 2:43 pm
That last comment was directed at Jesse the K. I’m not sure why it wasn’t put in place.
sistercoyote
February 8, 2016 @ 11:06 am
My depression has been managed for over ten years now through a combination of meds and therapy, but in my experience, like any other sort of recovery, it’s a wibbly-wobbly line, not a straight one.
Bonelady
February 10, 2016 @ 12:48 pm
I am dyslexic, and while I value the lessons I learned from it. I’d rather not have it. I’m 60 years old, grew up in a somewhat isolated rural area, and so was undiagnosed untiI I was in grad school. Many people while I was growing up thought I was stupid, and did not hesitate to say so. My parents knew this was not right, but had no idea what was wrong with me. So hit yourself with a hammer, lady and find out what being disabled is really like. Hopefully, you won’t say stupid stuff like that again. I’ve had a damaged knee since I was 12. Now I have severe arthritis in both knees, my lower back and my hands. So don’t tell me “we’re all disabled” unless you have the xrays\mris to prove it.