Wednesday, June 15, 2011

John Elder Robison Disappoints in Interview

John Elder Robison may be the second-most-famous autistic person alive now --- Temple Grandin, of course, being the most famous --- and, as such, is treated as something of an authority on autism. He sits on a 30-person scientific review board at Autism Speaks, which makes recommendations about which research to fund, and he is also a bestselling author (Look Me in the Eye, and now Be Different) and speaker.

(In this interview with NeuroTribes blogger Steve Silberman, Robison says that part of the reason he wrote his second book was because people kept asking him how he was able to be successful, and whether he had any advice or wisdom to impart that would help other autistic people achieve similar success).

So I was quite disappointed when I came to this part of the interview:


Silberman: Are there any ways that society could be reformed to make it a more comfortable and supportive place for autistic adults?

Robison: I don't think that's a realistic question, Steve. We represent one percent of the population. Asking what 99 percent of the world should do to make it a better place for that one-percent member --- that's verging on science fiction and fantasy. People who get into that way of thinking become militant about demanding their rights and thinking about what the world owes them. Frankly, I don't think the world perceives that they owe us one single thing.

If you're a guy with severe autistic disability and you can't talk, you cry out for compassion by your very existence. It's obvious when people look at you and listen to you. If you're a person in a wheelchair, nobody can reasonably argue that you should just get your ass across the street. But when you're a person like me and your disability is principally with social functioning, and at the same time you have good language skills, people are going to dismiss you as a jerk if you don't learn to fit in. That's the hard truth. To suggest that someone like me should ask for accommodations is, in my opinion, setting that person up for failure. Because when your language skills are good, there's no external sign of disability, and you act weird --- and then you make demands on people for how they ought to change to accept you? That's a non-starter.

It looks like Steve Silberman was also taken aback by this answer, because he actually starts arguing with Robison about it for a while:


Silberman: But other minority groups have demanded reasonable accommodation from society, such as laws against discrimination in the workplace. Black folks did it by launching the civil rights movement, many other disabled groups have done so, and gay people --- like your brother Augusten [Burroughs] --- have done it, too.

Robison: The race thing is completely different. You can look at someone and right away know if they're black or white. There's been a huge gay rights movement, but look at what there is already for gay accommodation. I don't think there was ever an issue of people refusing to hire gay people in most workplaces.

Silberman: Well, that isn't true. I'm not trying to argue with you ---

Robison: In the autism world, people look at your behavior and say, "He's acting like a jerk, I'm gonna treat him like a jerk." If you're a gay guy and you're acting like a jerk, people think you're a jerk; but if you're a gay guy and you're nice, people think, "He's a nice guy."

Silberman: Not always, but I hear what you're saying. [changes subject]
I think Robison misses the point about a lot of things in this exchange. When he's trying to explain how the neurodiversity movement is fundamentally different from, and less reasonable than, past liberation/civil-rights movements, he greatly overstates mainstream society's willingness to do what those past movements asked of it.

He also overstates the degree to which racism and homophobia aren't still entrenched in mainstream (white, straight) society today. Obviously things are better than they were, but Robison is flatly wrong when he says that today, a gay man can be confident that he'll always be judged according to his personal merits, and not by the fact that he's gay (or a black man by the color of his skin). He's also flatly wrong when he says that gay people were never barred from any form of employment because of their sexuality. (What does he think "Don't Ask, Don't Tell" refers to, one wonders?)

I also have serious problems with this:

If you're a guy with severe autistic disability ... you cry out for compassion by your very existence.

The poetry of this image aside, I find its implications --- that autistic people (or other people with severe disabilities, however we're defining "severity" today) don't need any more rights, legal protections, etc., because other people will automatically take pity on them and give them whatever they need --- disturbing.

They disturb me because I know differently. And it makes me angry, given the extent to which abuse and neglect by caregivers is A HUGE PROBLEM for people with disabilities, to hear that we cannot possibly be abused, neglected, impoverished, or anything else bad because our mere existence appeals so urgently to the better angels of human nature.

Anyway, apart from that, it also bothers me that his argument is essentially, "But it's too hard to change society! We can't ask *THAT* of them!!" and then, when faced with examples of other minority groups who've done just that, and achieved some success, he seems to think ... I don't know what. That society has already adopted those reforms, and since it hasn't adopted the reforms neurodiversity/disability activists are pushing for, that those reforms must be less reasonable than the reforms already (grudgingly, laboriously, slowly, incompletely) adopted?

There's also the fact that his whole "the 99 percent cannot be expected to change the way they do things for the benefit of the 1 percent" essentially amounts to, The Devil take the hindmost! Which is pretty much the way we do things here in Capitalismland, but which I think is a really horrible way to run a society. Horrible for everyone, not just autistic people.

Which brings to mind the last big, philosophical thing that bothered me about his answer. He assumes that the reforms neurodiversity activists want would only be beneficial to autistic people, and would either do nothing for, or actively inconvenience, everyone else. I don't think that would necessarily be the case; I think lots of people would benefit from a more flexible, accommodating workplace or an improved system of caregiving or more walkable communities or whatever else. People who aren't disabled might be able to stay afloat in the current social/economic arrangement; that by no means implies that they're thriving under it, or that their lives couldn't also be improved by tweaking said arrangement. After all, "society" isn't this immutable thing like the laws of gravity or thermodynamics; it's something people make, and can remake as needed.

9 comments:

Gavin Bollard said...

It's not the first time that John Elder has said something that gets me a little... defensive? but I've learned to stop, re-read and re-evaluate.

You're falling into the classic trap that many people do when listening to aspies. John is taking a lot of steps and assuming that everyone is keeping up when they're not. People with aspergers often skip large parts of conversations (which occur silently in their head instead). It's sort of like giving the answer to a complex mathematical question without showing the working.

What John is saying here is "generally" correct;

There aren't really any general reforms that society could make to make it more comfortable for autistic adults.

For a start, society would have to ditch their capitalist ideas of "every man for himself" - and we know that's not going to happen.

Then, society would need to be able to more easily recognise people on the spectrum in order to provide accommodations - that's not going to happen either - after all, many of the people on the spectrum either don't know that they are - or don't acknowledge their place on the spectrum. There's no visible cue - nothing. We'd either have to make allowances for everyone or find a way to figure out who is on the spectrum. Either path is dangerous and no, we're obviously not going to walk around with jigsaw puzzle pieces sewn on our clothing - ouch!

While I do agree with the idea that making too many allowances for people on the spectrum can sometimes make people more dependent I still do think that there is a need for allowances - and more importantly understanding.

It's not going to come from "society" as a whole but more likely from just a few key areas.

I don't think that John was properly prepared for the question and I suspect that nervousness or some other quality affected his ability to answer.

We shouldn't necessarily blame him for that but I'd like to see John issue a clarification at some point - even if it's only on his blog.

Dan said...

Robison responds to the interview:

http://jerobison.blogspot.com/2011/06/some-thoughts-about-steve-silberman.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+LookMeInTheEye+%28Look+Me+In+The+Eye%29

austiespectrum said...

Disturbing, I think is very disturbing.

austiespectrum said...

Well, at least he made a clarification.

Meowser said...

Sounds like he's making an assumption that 99% of the population is "normal" -- i.e. no neuroquirks of any kind -- and 1% of us are "abnormal," and never the twain should overlap.

That is just bewildering. Plenty of people who are not diagnosable with anything "official" have what I would consider to be "autistic traits" of one kind or another, and many of us -- wasn't he one, too? -- went for a huge chunk of our lives thinking we were just "failed normals," before we knew the truth. There's more like us who don't even know yet that that's who they are, too, given that ASDs are way underdiagnosed in people over 30.

And we're not even getting into other mental health/neurological conditions, which also have a great deal of overlap with the undiagnosed population, in terms of both inner life and behavior. There's an awful lot of people out there who "pass," at least part of the time, or whose neuroquirks are written off as "artistic temperament" or suchliike.

Now, whether employers, these days, actually feel like accommodating PWDs of any kind, when they have a huge pool of nondisabled applicants to choose from and they don't have to tell you that you're not being hired because of your disability...that's another story. And no, I don't think one's neurotype is an acceptable excuse for being abusive to people, not at all. JER seems to believe (and yes, I read the followup post) that accommodation for autistics means allowing us to be as abusive and nasty as we feel like being, and forcing employers to hire us even if they dislike us personally. Oh boy. I don't even know where to start with that one.

Lindsay said...

@Gavin - I take your point about JER maybe trying to express something more nuanced than what I saw and failing.

(I do that often enough, you'd think I would recognize it in someone else).

I also agree with this:

"It's not going to come from society' as a whole but more likely from a few key areas."

I agree very much with that; "society" was just the only word I could come up with.

Lindsay said...

@Meowser:

"JER seems to believe (and yes, I read the followup post) that accommodation for autistics means allowing us to be as abusive and nasty as we feel like being, and forcing employers to hire us even if they dislike us personally."

Yeah, I noticed that, too --- or rather, suspected that he and I might mean different sorts of things by "accommodations".

No, accommodating someone with a social disability (which is what he has, and the context of his comments in the interview) does not mean allowing that person to do whatever he or she wants and shielding them from the consequences! It might mean changing hiring practices so that people who don't interview well are given another chance to show what they're good at --- I suggest trial workdays in one of my posts on employment --- or it might mean redistributing duties a bit to minimize interpersonal interaction. (Like, say, in an office environment where there's both phone-answering and data-entry to be done, you could put an autistic worker on just data-entry).

(Also, interesting thing: he mentions in his followup post that many of us get fired from jobs we're not very good at, like cashiering. I've also touched on this before --- we *KNOW* we're not going to be very good at those jobs, but if the only job you can get is something you're bad at, wouldn't you give it a try anyway?)

Anyway, I don't envision it as a free pass, but as flexibility.

Lindsay said...

@Dan - thank you! I just went and read it, and also another post he's recently made about accommodations.

Links, for those unwilling to cut&paste a clunky URL:

Some thoughts about the Steve Silberman interview

Accommodation

Sarah said...

Really great discussion here. And thank you, Lindsay, for still reading my stuff. I'm sorry that the Tumblr format is difficult for you. I used to find it really difficult to read/follow as well, until I got one and started reading everything on my dashboard.

Yes, I'm also confused about how Robison is using the term "accommodations." Moreover, I'm not sure what specific "behaviors" he's suggesting that autistics should "get a free pass" on. Really, nobody is suggesting that autistics should be able to act like total jerks and remain employed. But is it really so unreasonable to ask that our co-workers and potential employers refrain from making judgments on us because of our unusual body language, for instance? If there were to be more understanding of neuro-atypical behaviors, a lot of people would benefit, as people have been saying here.

To use an actual example: I met my graduate school adviser while I was applying to graduate school. I was certainly pretty awkward socially during that meeting, and I later learned that she suspected that I was spectrum-y fairly early on in our relationship. Yet my adviser approved my admission to the program anyway--despite the fact that she suspected that some parts of being a grad student would be particularly challenging to me. But I had other things in my favor, and now that I'm in the program and have gotten to know her better, she's a strong supporter of me. I think it would be great if we could just get more people to have more of that kind of open-minded attitude: okay, so you're not entirely typical in social interactions, but it looks like you might have other things to bring to the table, so let's give you a shot. That really, really shouldn't be onerous.

Nor are any number of any other accommodations which might benefit autistic people (and possibly others!), such as providing a quieter work environment, allowing employees to stim without social stigma, allowing employees to present their work in written form rather than verbally if that's what's most comfortable. Everybody benefits from a more flexible, accommodating work environment and autistic people are able to contribute towards whatever.

The analogy with ramps for wheelchair users and other people with mobility impairments is actually very appropriate in this context. To my mind, even if the only people who benefited from ramps were PWD, there would still be a social obligation to provide them. But that's not the case happily enough. Other people who benefit from ramps include parents with strollers, workers delivering large items, even people with wheely suitcases. Lots of people benefit from ramps even though they were originally designed to accommodate only a subset of the population. Accommodations for neuro-atypical people can be similar.