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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.

#

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.

Mirrored from Jim C. Hines.

Comments

( 49 comments — Leave a comment )
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karalianne
Feb. 4th, 2016 10:12 pm (UTC)
She's not empathic; she didn't understand that autistic man at all. And I know so many autistic people who state readily that they feel too much. The reason people don't think autistic people have empathy is because they often express it differently. That's not the same as not having it; it's not meeting your expectations of what empathy looks like, and it's you not recognizing empathy when you see it.

Also, speaking as someone who has ADHD, which is a disability, no, we are not all disabled. Everyone has limitations, but that doesn't mean we're all disabled.

(And I couldn't read her essay as it was a lot of words in front of me when my infant son is napping so I don't know for sure how long I have. I will try to read it later tonight after he's in bed and I've had dinner, and then I may leave a comment there or here or both.)

Edited at 2016-02-04 10:13 pm (UTC)
beccastareyes
Feb. 4th, 2016 10:21 pm (UTC)
I know a lot of autistic folks also don't see their autism as inherently disabling: that the problems it causes is more because we live in a society which is not set up for autistic people. (To use an analogy: I am pretty nearsighted. In America in the 21st century, this is not a disability, because I can comfortably use eyeglasses to get by at little inconvenience to me. If I didn't have eyeglasses/contact lenses/eye surgery, or those caused as many problems as they solved, my vision would be disabling.)

(Also, I'm on the autism spectrum AND I consider myself almost painfully empathic. Autism means it's harder to pick up on emotional cues from face or body language or learn the social rules for how to respond. It doesn't mean if you see a friend crying, you don't feed sad.

Also I'm not bothered by touch (or no more so than most people). Autism means you have sensory over or under-sensitivities, and a lot of mine are hearing-related. I was more likely to touch all the things as a child than shy away from it*. Some autistic folks do avoid touch because their sensory issues lean that way. And some probably don't want to deal with the complexity of social rules that go with touching another human.

* Though my mother said I had trouble knowing when I could initiate hugs as a toddler. She told family members if they wanted a hug, to hold their arms out so I'd pick up the non-verbal cue of 'okay to hug this person now'.
mrissa
Feb. 4th, 2016 10:36 pm (UTC)
What.

WHAT.

You have been remarkably restrained here, Jim.

I don't want people to feel sorry (or "sorry," whatever the quotation marks add) for me for having vertigo, but since it is intermittent, I can in fact say that what I have when I can't walk is in fact less. It's also different! But less. And if Captain Empathy over there wanted to actually sit down and listen to my actual experiences, she could get an earful about the level of condescension involved here.

Not to mention her blithe misconceptions about autism that she didn't even bother to research because apparently it's not important to know what you're talking about if you're self-proclaimed empathetic.

I have removed all the swears from this comment after. Because that is how I was raised.

But really: her essay was terrible on a number of fronts.
mt_yvr
Feb. 5th, 2016 12:15 am (UTC)
....


Feh.

I'm sick. So my words.... are... (gestures) over there. Somewhere. In piles.

This is just. Wrong. Very. (head on desk) I mean, jesus. That's just wrong.
inaurolillium
Feb. 5th, 2016 12:15 am (UTC)
Well said, sir!

I absolutely hate that crap.
starcat_jewel
Feb. 5th, 2016 01:14 am (UTC)
Holy FUCK. Anyone who tells someone who's dealing with a grief that God meant it to be that way is the reverse of empathetic. Because what that says to the other person is, "God hates you."
starcat_jewel
Feb. 5th, 2016 01:26 am (UTC)
Oh, now that's interesting. I clicked thru to the article, skimmed it, read the comments, left a comment of my own (which I will admit was scathing)... and now when I try to click thru again, it goes 404 on me. I wonder if they yanked it after seeing the unanimously-negative response?
jimhines
Feb. 5th, 2016 01:30 am (UTC)
It looks like they pulled it down a few minutes ago, yep.
joycemocha
Feb. 5th, 2016 01:36 am (UTC)
ARRRGGGGGGHHHHHHHH.

Look. I'm not just the parent of a high functioning autistic, I'm a former special education teacher who worked with a number of kids on the autistic spectrum. The first generalization about autism is that YOU CAN'T GENERALIZE AUTISM. Too many factors and too many subtypes, all dependent upon how factors such as sensory sensitivities, language processing, working memory and so on impact the individual. And that's before factoring in the sort of home supports that happened while that child was growing up.

Oh well. I think just about EVERY novel I've picked up with autistic characters has gotten it wrong somehow. Most of them I want to throw against the wall.
starcat_jewel
Feb. 5th, 2016 02:58 am (UTC)
In case you haven't encountered these two: A Wizard Alone by Diane Duane has an autistic main character in her Young Wizards universe. This Alien Shore by C.S. Friedman has an autistic protagonist, and a second non-NT protagonist who I can't describe further without it being a spoiler for anyone who hasn't read the book.

I think both of those books handle the autism issue pretty well. If you've read either or both of them and disagree, I'd like to hear your opinions.
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laurel
Feb. 5th, 2016 02:03 am (UTC)
Google Cache has the piece in case anyone else wants to see it and came late to this.

dharawal
Feb. 5th, 2016 02:55 am (UTC)
Wow, just wow, I read the google cache copy, and I'm speechless.

That she truly believes that she is empathetic is so much WooWoo and that she believes it's a genuine disability.

Not often am I left speechless.
dancinghorse
Feb. 5th, 2016 03:13 am (UTC)
I saw the title and my head spun completely around and I said, "Life is too short."

I have an actual physical disability. I spend significant amounts of time dealing with the compromises and outright can'ts that it forces on me. To be told that "everyone is disabled" erases the details of my life in ways I can't even express.

I'm glad they took it down. I admire the series greatly, but when they publish a piece by someone who is not in fact disabled, as they did with the guy who ever so condescendingly and without actual knowledge or understanding talked about deafness (which is my disability), and now this...well. I guess we all make mistakes.
joycemocha
Feb. 5th, 2016 03:29 am (UTC)
And then I read the cached version. ARRRGGGHHH. Autism is also not a superpower. That's the flip side of the "let's cure it now" mentality.

As for the empath stuff...no.

We all have strengths and weaknesses. But just as strengths do not equal superpowers, weaknesses are not the same as disability. "Everyone is disabled" also does not promote empathy, it promotes erasure. It's appropriation of disability.
evewithanapple
Feb. 5th, 2016 04:24 am (UTC)
This young chap would never know that, nor would he care if he knew.

How does she know that?

Uncharacteristically for someone with autism, he touched my arm.

How does she know that? Yes some people with autism are touch-averse, but to say it's uncharacteristic of "someone with autism," period, is just . . . weird and narrow-minded.

Also, SF Signal posted an apology about an hour ago.
badgerbag
Feb. 6th, 2016 09:40 pm (UTC)
I guess she knows it because she's such an empath she can read his mind!!!

j/k

lietya
Feb. 5th, 2016 04:46 am (UTC)
I respect that they took it down and the apology, so I will only say that I am very, very (VERY) tired of allistic people who make bizarre assumptions about autism while simultaneously claiming to have great empathy. In my experience, some of the people who bill themselves as the most empathetic are actually the *least* likely to meet me halfway, because their definition of empathy apparently includes the inviolable assumption that they are "normal" and us pathetically broken autistic folks have to do all the heavy lifting of communicating with them. Needless to say, I appreciate neither that attitude nor the presumption that people who differ from the norm exist as an object lesson to the rest of the population.

(With that said, I would not have been willing to touch her... for fear of being judged wanting in one of the myriad mysterious and subtle rules of human interaction, which she cheerfully did to that man *and then published.* Very empathetic, thanks.)
joycemocha
Feb. 5th, 2016 05:25 am (UTC)
IMNSHO, if you have to brag about your empathy, you ain't got it. Not just poking fingers at this person but at many, many others. Drama does not equal empathy. Heightened emotions is not empathy.

(and I never understood the "lack of empathy" assumption about autists. My son was and can be quite empathic--and in other autists, I'm not certain but I believe I've seen empathic overload.)
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elusis
Feb. 5th, 2016 05:52 am (UTC)
Apparently self-diagnosing as an "empath" is this week's Tumblr/Facebook trend because I've seen "9 ways you know you're an empath" or something like it at least 3 times recently, and I haven't been on FB that much.

In my book, this goes along with people who declare themselves to have a disability because they are gifted.

(for the record I'm personally way above two standard deviations on the IQ bell curve, and am pretty good at my profession as a therapist because I can attune pretty effectively to people, AND I have actual disabilities but neither of those are on the list.)
joycemocha
Feb. 5th, 2016 02:50 pm (UTC)
I'd kinda sorta give someone who's young a break on the gifted=disability claim, just because they may not know better due to their own experiences and background. It's a fading thing, but in some states in the US, "gifted" is considered to fall under the auspices of special education. Someone coming from that background might well make the assumption.

That said, that's an old classification and not as common now as it was in the 90s and early 00s, and as the years pass that becomes less of a factor. Just a pedantic note from the special ed-trained person.
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