For the record, I did email Will already and let him know this thread's coming, given that he's an actual person with an actual kid with autism.

This might be thread drift -- if so, please tell me to fuck off -- but I'm wondering about the line between disability and identity. As someone who has acquired a (very mild and perhaps short-lived) disability in the last few months, I'm struck by how quickly it has begun to shape my identity. Are there disabilities that don't shape an individual's identity?

re: 2

[ditto on thread drift]

That's a question that comes up in some of the philosophical literature about disease. e.g. is it possible to compare a person with a disease or disability with hypothetical-same-person without that disease or disability?* To what extent are they the same person if the having of that disease is constitutive in some sense of them being the person they are.

* Which isn't as abstract as it sounds. We make those sorts of counter-factual assessments all the time when we consider things like how a particular disease or disability might affect someone's quality of life.

Also, I have a number of friends whose children who fall somewhere on the autism spectrum. Their (the parents -- though probably the children, too) experiences seem to vary so much, based not only on the nature of their children's disability but also based on the age of their children, that they have almost nothing in common.

3: that's interesting. Scientific racists and pro-slavery ideologues used to insist that people of African descent were a different species (literally born of a different creation) because they apparently were immune to yellow fever.

What keeps coming up in the book is how once a culture emerges around the condition, it can be threatened by medical advances, and so there's a tension between curing the condition and respecting the community identity.

For example, Deaf culture and cochlear implants.

I can't wait to read this book, but I know the adoption people were all shocked that there wasn't an adoption chapter, since it's perhaps the most obvious horizontal identity.

The collection of chapters is actually kind of weird. I don't understand why there's a chapter on schizophrenia, since it's primarily adult-onset. Yes, parents are most often the primary care-taker, but it seems to be categorically different.

(Also I'm sort of cringing at the total lack of people-first language in the post, but I'm not sure if that's just a sign I've been indoctrinated or what.)

Also also I should have something more interesting to say once my decongestant kicks in and I stop being quite so dense.

re: 7

Yes. And obviously there's lots of historic examples of things that we don't now think of as diseases but rather as either a legitimate lifestyle choice, or an expression of a deeply constituted personal identity. The classic example (possibly overused in the literature) being homosexuality. You see some of the same arguments being repeated around some of the milder autism spectrum diagnoses.

If I had to speculate as to why he excluded adoption, my guess would be that he was motivated by people who were shocked by their situation and it didn't involve any choice - like, how could you love your kid who is so different from you? (Jammies passed along that he said something like that in an interview.)

That motivation falls apart around Down Syndrome, since he does deal with how some parents have prenatal testing and choose not to abort, etc.

11: I do think one area where this is really difficult right now is in transgender stuff where if you want surgery to be covered by insurance, there has to be something wrong with you that the surgery will fix, and yet on a political level you might also want to push against this being seen as any sort of medical or psychiatric problem. I know the new DSM is supposed to have some serious weak spots in that regard, but I'm not sure of the details.

12: I think I'd heard that too. Though the question of expected difference is coming up a lot in the online conversations around the Russian adoption ban, because there are theories that the high rate of abuse against Russian adoptees versus, say, Guatemalan might have to do with the extent to which white parents adopting white children expected not only to be able to "pass" but to have the children be like them as well as look like them. I have no idea to what extent this is bogus and it's always only going to be a guess since I don't know of any studies following people who abuse or kill their adopted children.

Also I'm sort of cringing at the total lack of people-first language in the post, but I'm not sure if that's just a sign I've been indoctrinated or what.

I know vaguely what people-first language is, but just to check, would it then be written, for example,

So far I've read the chapters on parents of deaf kids, dwarf kids, Down syndrome kids, and autistic kids kids with hearing deafness, dwarfism, Down syndrome, and autism.

?

(Sorry, heebie, that I haven't actually said anything about kids with autism yet. I will add that I know there's another person here with some relevant parenting experience and I would love to hear something, presidentially or otherwise, about that experience. But now I'm going to go blow my nose for a while.)

Russian adoptees are abused at higher rates than adoptees from other countries?! Weird/awful.

Is there actual support for that or is it just Putin's talking point?

There are lots of white babies adopted within America, too. Are they abused at higher rates?

re: 13

Yes, and there are various forms of dysmorphia that are at least superficially similar but where the current orthodoxy in terms of diagnostic classification and the availability (or ethical acceptability) of surgical treatment is very different.

I'm about to get on a plane, but I look forward to reading the thread and practicing deep breathing this afternoon.

I have wondered about whether the current (last couple of decades or so) practice of referring to the whole autism spectrum as variants of one thing, rather than sharply distinguishing between the less and more severe manifestations of it, is generally helpful or difficult for the caregivers.

I mean, leaving aside the self-diagnosed "Saying I have Aspergers lets me be a jerk without social penalty" nitwits, there seem to be a fair number of people out there for whom conditions on the milder end of the autism spectrum aren't particularly disabling, and whose parents may need support and assistance, but are still getting quite a lot of the ordinary rewards of parenting: affection from their kids, success in school, whatever (Laura from 11D reads here sometimes, and blogs about her son with an autism spectrum disorder that's serious and takes a great deal of effort on her part to manage, but doesn't seem anything like the experience described in the OP for parents of kids on the severe end of the spectrum). Identifying mild and severe autism spectrum conditions as a variant of the same thing, even if there are good reasons for it, seems as if it would have important social/psychological effects on the caregivers: I'm not sure exactly how it plays out, but it's something I'm curious about.

I don't know the total stats on abuse of Russian adoptees and basically neither does anyone else. I think there was only the one public case of a Russian girl adopted specifically to be a sex slave and there have been about 20 murders of Russian adoptees, but Russia has always (?, for a long time anyway) had a requirement that post-adoption information be sent to the Russian government every six months or so for the first few years and Americans have routinely ignored that requirement since there was nothing Russia could do about it. This site is not unbiased but is the only place I know where information on abuse against adoptees is being compiled and published.

I don't want to open the Fetal Alcohol Syndrome can of worms again, but that. And I think it's uncontroversial to assume that children coming out of Russian orphanages are probably not going to have had optimal starts to their lives by middle-class American standards and they're going to have ongoing impacts from that. There's a whole field of pre-adoptive medicine where American doctors look at the charts and the partial information they've been given to try to figure out what truths might be hiding underneath, and that's because there have been a lot of unethical people on both sides passing along inaccurate information that will make adoptions move more smoothly.

There are a lot of fantastic parents who adopt internationally, but there are also a lot of parents who are afraid to foster or adopt from foster care and don't realize that by adoption non-infants from other countries, they're going to end up dealing with a lot of the same things they didn't think they could handle but without the help that we get from the state.

(Not bothering to preview, so presumably a billion people will have said a billion things since 17-19, so sorry.)

This is one of those situations where it really helps to be not so hung up on the notion of identity. I would like to be rid of depression. I think a person similar to me, but without depression, would be a better person. Does this mean I wish I were dead and replaced by a different, better person? Is such a statement a symptom itself of depression? Better not to worry about identity at all.

All this to say, it would really suck if an identity movement built up around clinical depression.

22: He doesn't offer any final answer, but wrestles with that question extensively in the chapter.

15: Yes, something like that. I know it can be awkward and I probably sound ridiculous sometimes, but it's sort of become second nature to me and so now I notice when it's not being done.

Also, I keep feeling like the problem of 22 would evaporate if support services were readily available and well-funded.

Oh, hey, this book was recommended to us recently and I think Bave already read it. I am a slow reader and find long books daunting but will probably take a stab at it. I liked The Noonday Demon.

re: 24

I think in some cases the sort of thing you are saying is fairly clear cut, yeah. I'd like to be just like me, only with a lot less joint pain. Less so in others. Not just conditions with identity movements* associated with them, but things like personality disorders, and so on. Maybe you are right that it's a non-issue, but I suspect not.

* no value judgement implied here vis a vis the legitimacy of any specific identity movement.

All this to say, it would really suck if an identity movement built up around clinical depression.

Maybe a ship that has already sailed? In the Middle Ages, or earlier, even, with the melancholic type, and melancholia.

I do know about people-first language, etc, and I think I forgot because he doesn't do it in the book. So it stopped looking weird to me a few hundred pages ago. But I apologize.

Maybe a ship that has already sailed?

Rather.

The author does talk about his own depression throughout the book, and has a bit of identity around it. It sounds like he's not currently suffering and (therefore) is glad that it made him who he is, rather than wishing it begone.

I really didn't want to make you feel bad, heebie. And I think it's actually sort of about making judgments between identity and disease or other not-your-identity state, at least for me. I'm a person who has scoliosis and a really frustrating sinus something right now, but I'm a gay person. Mara is a black girl and she was a child in foster care prior to her adoption. I wouldn't say "autistic person" because it sounds defining in a different way from "Deaf person" or even "deaf person."

All this to say, it would really suck if an identity movement built up around clinical depression.

I don't think there's room for a real identity movement per se, but I certainly get along better with depressive types than with most other people. I ascribe this to some combination of depressive realism (it's easier to get along with someone with a similarly bleak worldview) and simple empathy.

I think there are people with autism who want to be called Austistic people, much like Thorn says she is a gay woman and Mara a black girl.

I dont check that email as frequently as I should.

I havent read the book, but, based on my prior comments, you probably know that I believe that meeting one autistic person means that you know a little about one autistic kid.

My daughter takes a ton of meds for seizures and behavior. We spent years of her waking up at 3 or 330am. I regularly fell back to sleep on my stomach with her on my back, with my hands covering my face so she couldnt mess with my eyes.

Thanks to meds she sleeps through the night.

Some weekend highlights:
-She got up from dinner, grabbed my hand and made me dance with her. (Youssou N'Dour). Then, she made me change the music when Kiss by Tom Jones came on.

-She sat on my bed and screamed "MOMMMMMMM!!!!!!!!!!!!!!!!!!!!!" for 30 mins on Sat morning. She thought she was being funny. She would scream and then laugh like a crazy person.

-She LOVES our black lab Memphis. We are sharing her with BR. We went for several long walks where she held the leash. She also hugged her and rubbed her and kissed Memphis. Memphis has lymphoma and will be gone in 2-4 months. Once Memphis is gone, I dont think my daugher will miss her bc of her inability to think abstractly. This thought sometimes brings me to tears bc the same concept applies to when I am gone. However, it simultaneously brings me comfort bc I do not want her to feel the pain of loss.

-She cannot shower by herself. Althougth she likes feeling beautiful and clean, she beats the hell out of me while I try to get her showered. She smiles while she hits me. She is persistent and focused so once she starts hitting, it can last for twenty mins or longer. I can usually divert her in 20 mins. She has a boney growth on one finger. We call it the boneclub. My son and I joke that "You hit like my sister" means that you are a badass, featherweight, if featherweights could bite.

-if you meet her, you will likely get a hug and a kiss. Perhaps even a slight grope. My people are huggers. Perhaps through constant contact, she is a hugger. Perhaps that was who she was without any training by me. She is a relatively quick hugger though. She does not like sustained contact. She might also try to pick you up. If she does, she will also say "Heavy!" Dont be offended.

- She loves black markers. She has a purse full of them. We stopped buying them for her bc she is insatiable. She always wanted more. She would scavage homes to find more. That need to search had subsided. But, last night, she and I went to dinner and she decided to try to find some at the restaurant. The people were very nice, but nobody really likes a 20 yr old autistic kid behind the bar. When we got home, she pushed me around the house for an hour repeating "Find them!" My stock response is that "I dont like markers. Only she likes markers. I dont have any markers. Only she has markers." Repeat 1000 times.

- About 4 years ago, we were fortunate to have received respite care under the Medicaid Waiver. Without that, I am not sure what her mom or I would have done.

- I need to think more about her future. But, it scares me silly.

For the sequel the should switch the roles: Deaf parents of hearing kids, etc.

I'm partway into the book and, while I can't evaluate its accuracy on every point, I'm finding it to be admirably clearheaded when making distinctions while also (apparently) very sensitive to allowing the messiness and variety of different people's experiences to come through. Highly recommended if you don't mind the length.

Also, my understanding of the book was that the author isn't looking only at the disability/identity borderline. (He problematizes both of these categories but recognizes they're still useful in many contexts.) Rather, he's interested in what he calls "horizontal" identities, which are identities that a child does not usually share with their parents. The author is explicit that, e.g., being gay is such an identity, but he doesn't write about it much in the book except in talking about his own experiences. I don't quite understand how he came up with the particular topics he focuses on, but they seem to have been chosen partly to be very different from each other in terms of how they affect the children, the parents, functioning in the "normal" world, etc.

When my son was diagnosed as profoundly learning disabled and/or having a severe language-based learning disability and/or dyslexic--all the same thing, obviously--I was devastated. One doctor warned me that I should be prepared for him never to learn to read, but hey, the good news was that there's never been a better time to not be able to read, because all of the great adaptive technologies. I came home and cried. I looked at the books I'd been saving all my life, waiting for the child I'd have someday who would love them just as much as I did--Edward Eager and PL Travers and Diana Wynne Jones and dozens more. I don't know how many times I moved, lugging those books with me, all for the eventual excited conversations I'd have with a five-year-old discovering the magic. And...not so much. But it did feel like some sort of cosmic irony that someone who'd spent her life obsessed with books would have a kid who was brilliant, charming, funny, sweet and dyslexic. It's interesting that the book doesn't have a chapter on learning disabilities, though, because the way in which the hidden disabilities impact identity is sort of fascinating in an unpleasant kind of way.

38: it doesn't cover situations such as those?

38/42: They arise ad hoc in some of the anecdotes - description of the deaf kid's childhood, adolescence, adulthood with marriage and relationships and sometimes a hearing child, and now the person is a grandparent. Or whatever.

Also, I keep feeling like the problem of 22 would evaporate if support services were readily available and well-funded.

It still has lots of implications for research on autism -- for one thing, it's so much easier to do many kinds of research with participants who are relatively "high-functioning," a lot of the resulting claims about "people with autism" or "ASD," the possible etiology of autistic spectrum disorders, etc. are really drawing on investigations of a distinctive subset of that population.

This is incredibly minor compared to the scope of the book, but I was completely shocked when Hawaiian Punch came out looking nothing like me. I unconsciously assumed my looks and personality were dominant, and she'd be a mini-Heebie in all ways, and I found her appearance specifically disorienting for awhile. (My dad used to periodically comment on the family resemblance in my brother's family, and then say "whereas you and Hawaii look nothing alike!" which seemed a little gratuitous.)

Later the ways in which her personality is nothing like mine emerged. I've been thoroughly disabused of the notion that she is any sort of extension of myself.

44: Good point.

I figured Jane would look nothing like me, and lo! it was so.

One of the points that has come up repeatedly is how, if society (and especially the legal system) decides that something is a disability, it's way easier for people to get medical services (like hormone therapy and gender reassignment surgery) and reasonable accommodations for their difference. But then you also have the label "disability" stuck to you, telling you that you lack something that "normal" people have. Under the current legal regime for provision of services and accommodation of differences, this seems like an inevitable tension. Not that we shouldn't change the current legal regime.

10.1, etc: I'm happy to try to refer to people with whatever language makes them most comfortable, so I hope I say this more as a curmudgeon than as an asshole, but it really doesn't seem to me like in standard English the two grammatical choices "[adjective] person" and "person who has [attribute]" carry any strong information or distinction about the importance of the attribute to the person's identity.

22 and 44 are excellent points.

Limited resources can result in pitting parents against each other a bit.

45, 47: As the mother of a kid with an extraordinarily strong resemblance to me (and where she's not like me, she's surprisingly like my big sister), and one with very little resemblance at all, I find parenting the kid who's less like me refreshing. I get all weird replaying issues from my own child/teenage years with Sally, and much less so with Newt.

49: I was really just trying to comment on the extent to which I've brainwashed myself. I don't think anyone else is an asshole here. I may well be.

She loves black markers. She has a purse full of them. We stopped buying them for her bc she is insatiable. She always wanted more

This is hilarious to me, because the autistic person in my life (my wife's daughter) obsessively collects pens. It's impossible for us to have our own pens in the house, because they all wind up in her collection which she enjoys arranging and rearranging by size and color.

They don't sound that much alike in other ways.

Aww, Thorn, you're like the least assholish person around.

This is a silly side issue, so I shouldn't dwell on it, but I guess I'm just confused about this in a "pick your battles" kind of way. I can see pushing for language changes if it seems like using the preferred term is somehow going to change the way people think about an issue.

My grandmother even objects to phrases like "a blind alley" or "a blind curve". (Not the blindness specifically but I can't remember her other examples.) And she will wear you down. Or at least Grandma of five years ago would have.

Well, I was being unproductive/assholish for bringing it up in the first place. I'm a little surprised (norms being what they are) that Solomon chose to use the other version, but he probably thought about it and discusses it in the book I haven't read yet.

I don't know if anyone else has finished it, but I assume he talks some about his presumption that his kids and most of the kids gay adults are raising will be straight, which is the sort of thing looked for in 38.

This is going to sound either unpleasant or insane or something, but I kind of think that part of the point of a lot of types of PC language is just the change in terminology -- that any word or phrase used to describe something that people are prejudiced about will accumulate unpleasant connotations, and there's a value even to arbitrary changes every couple of decades. That doesn't mean that any specific type of preferred language is arbitrary, but even if it were, I think there may be a value to it specifically because it's less familiar and less comfortable.

57: That actually makes sense to me, which could be proof that it is both unpleasant and insane.

I was completely shocked when Hawaiian Punch came out looking nothing like me [...] her personality is nothing like mine

Have you considered the possibility that maybe Jammies was fooling around and Hawaiian Punch isn't actually your baby?

59 is beyond the pale! How dare you, apostropher!

I was completely shocked when Hawaiian Punch came out looking nothing like me.

Much shorter, for a start, and bald.

I've checked the paperwork at the hospital, but I suppose that could be forged.

btw, Roberta says your holiday card is the best she has ever received and will probably get put back out every year.

Hooray!

I'm a little surprised by Thorn's 34, which seems to presume that race and sexual orientation are identities and what we might loosely call the disabilities are not. Like Oudemia, I know people with autism who think of themselves as autists, and, at the same time, I'm not sure I think of my own sexual orientation as defining enough to be an identity rather than an attribute. So I guess I would say that in addition to using people-first language, we should recognize that different people are going to respond to the same categories in different ways.

I'm not sure I think of my own sexual orientation as defining enough to be an identity rather than an attribute

ME TOO. I am not a bisexual person; I am a person with sexual gender-blindness. It's not like I expect the QUILTBAG to add a letter for my people or whatever, but Lord, conversations about sexual identity are tiresome and confusing to me for this reason.

sexual gender-blindness.

A disability?

65: I meant to be self-defining in terms of how the words work in context, not defining things for other people in a prescriptive way. I, too, know autistic people who self-define as such and I'm fine with that, I swear. I really shouldn't be talking at all today. I don't know what kind of Robitussin people were taking to get slizzered or whatever, but this Cough & Cold DM stuff is no joke and I feel like my brain is not working at all.

I was just thinking today how much I like the medical phrase "productive cough" because it makes me feel like I am accomplishing something when I have one.

69 made me laugh out loud.

I feel productive today because I've eaten about one dozen clementines in one sitting. What a pile of peels.

69: I was laughing to myself about that just this morning, my brother!

She loves black markers. She has a purse full of them. We stopped buying them for her bc she is insatiable. She always wanted more

Sometimes I regret that I don't have the energy or the attention span to pull off a good obsession.

I was just thinking today how much I like the medical phrase "productive cough" because it makes me feel like I am accomplishing something when I have one.

Just wait until your lungs start forming an exuberant granuloma! Talk about a rush!

We all have boatloads of identities, some lightly worn some not, and I suppose it's a real privilege to be able, at any moment, to cast off one or another as an identifier. It does seem to me, though, that while someone might prefer 'person who likes the Yankees' to 'Yankees fan' as a self-description to lighten the load, isn't it (a) presumptuous of me to decide, without any input, that the person should be referred person-first and (b) an objectively clunky use of language?

(Don't mean to offend by comparing liking the Yankees to having a disability.)

(a) presumptuous of me to decide, without any input, that the person should be referred person-first

Not more presumptuous than the reverse -- there isn't a safe default. Which means that worrying about presumption doesn't enter into it; you're stuck either making your best guess about what would be well received or asking.

The reason "Yankee fan" isn't an apt comparison is that people aren't historically marginalized by it. (Generally.)(Haw haw I bet if I knew more about sports I could make a cutting insult.)

this Cough & Cold DM stuff is no joke and I feel like my brain is not working at all

The sizzurp crew tended (tends? Did they all die?) to go for Coricidin Cold & Cough because it has codeine, but Robitussin DM has lots of dextromethorphan, which is an extremely powerful hallucinogen if you take enough of it (you haven't). Here, go read.

The person-first language always reminds me ineluctably of the Mr. Show episode where the guy says "I can't go to San Francisco! I've got homophobia!"

Which is not to say etc. just being a jerk etc.

Forgive my total ignorance, but does anyone here know what the evidence is that there's an "autism spectrum" in a meaningful sense? It always sounds to me like there's not a whole lot that's actually in common between high functioning and low functioning autism, but I don't actually know anything about it. How is it different from say putting TB on the cold spectrum?

Dextromethorphan is CRAZY WEIRD at high doses.

I've never heard of the "person-first language" concept before. It sounds absurd that it would change the way people think any more than changing "imbecile" to "retarded" did, but what do I know.

75 -- I'm thinking more of talking about someone rather than to them -- one doesn't nearly as often use third-person constructions in direct speech. If I'm talking to you about the Yankees fan up the street, it's not their conception but yours I have to be concerned about. I get your point about changing people's attitudes, especially concerning particularly sticky identities. On the other hand, having to care what you* think on behalf of the Yankees fan who lives 2,000 miles away from you motivates some of the pushback on this stuff, I'd imagine.

* Not even you, really. Rather, one has to care about the most sensitive person within hearing. There's a heckler's** veto issue, or really a heckler's side-tracking issue, that sticks out.

** Person who heckles.

Part of the point of these PC language rules is that it gives power to people who historically haven't had much power. The point isn't what the language is, it's who gets to choose it.

I am not overdosing on cough medicine! I just took exactly what it said to on the bottle and I am ridiculously loopy, but not coughing.

76 -- Ban-worthy analogy, I guess. I'll drop out.

but does anyone here know what the evidence is that there's an "autism spectrum" in a meaningful sense? It always sounds to me like there's not a whole lot that's actually in common between high functioning and low functioning autism,

My impression from the chapter:
1. There are no generalizations within high functioning autistic people, nor within low functioning autistic people, either. All autistic people exhibit some traits from the pool of traits, though, whether they're high or low-functioning.

2. When a subset of autistic people becomes medically well-understood, they get a different, specific label - "You have XYZ! Not autism!" So autism is sort of a catch-all describing a bag of symptoms, and is probably actually a whole network of interconnected diseases.

Part of the point of these PC language rules is that it gives power to people who historically haven't had much power. The point isn't what the language is, it's who gets to choose it.

And now we have all the Newt Gingrich voters continuing to benefit from real privilege in quantifiable ways, while now whining incessantly about the one realm of the world where they don't have power. I heard one guy somewhere eighteen years ago got fired for saying "spic and span"! We're under siege! When will it end! Have the P.C. Police no mercy?!

What do countries with robust welfare states and, specifically, more extensive parent-and-child support systems, do for parents with children in the most difficult space on the graph that the OP sketches?

OT I: The woman you reprobates call Lunchy and I visited a friend of hers who was preparing to return with her 6-month-old to [Foreigncountrylvania].* She said, laughing, that the trend in [Foreigncountrylvania] is for the mothers of young children to be addressed, and to introduce themselves, as "[child]'s mom." Everyone was amused when I said that one hears a lot of exactly the same thing on the Upper West Side.

OT II: Hey, E/liza/beth W/urt/zel is still alive and trollin' trollin' trollin' alive. That's ... nice, I guess.

* Her husband had to move back home a few months earlier for work; at least he's arriving soon to help pack and transport kid and domestic animals home.

To amend 87 from my limited understanding: also, on all the diagnostic criteria for autism, you see people along a continuous range of severity. So according to the only meaningful definitional criteria there are, it's a spectrum. If there was an actual known etiology for some of those symptoms -- and that led to something discrete and diagnosable, as you would see with a bacterial infection like TB -- then that would be a different deal.

I can never understand how any disease is actually given a name when it isn't caused by a known infection or a known genetic condition. You have these symptoms.... and that's what we know.

You've got a bad case of death!

88: Don't visit any firearms-enthusiast sites for the next several decades, CN. They're waxing excessively "We're an endangered species! Stalinhitlerbama is comin' for our blunderbusses! That's why we can't wear T-shirts with parodies of Peanuts' Franklin being lynched on them!"

Seriously, those guys all seem one bad afternoon away from the SPLC watch list.

91: By that criteria, no person should have gotten a name until sometime in the 1950s.

"We'd like to call him George, but he's just a collection of body parts, attached in some seemingly-organized way."

92: [Bangs head.] [Secret devil sign.] [Spray-paints "Lemmy roolz!" on high school gymnasium wall.]

Weird, I would have thought the word "spectrum" specifically connoted "has a 1-dimensional moduli space" whereas according to 90 it's a high dimensional space.

92: There was a botanica near my old apartment in Brooklyn that advertised "We have a cure for every disease but death!" So their clients don't die of cancer or heart disease; they just die of death.

I love Erowid titles:

Terror, Death and Everything in Between

Satan, aka Pseudoephedrine Laced Robo

Something Went Terribly Wrong

I keep trying to read Erowid backwards but that doesn't make sense, either.

99: Who doesn't love Edward Gorey?

I mean, there's nothing unusual about diagnoses of exclusion, but you don't hear about the Sarcoidosis spectrum or the IBS spectrum, so I figured it was saying something more specific.

Oh. Not me.

I mean, I like Edward Gorey.

82: No, I'm with Lizardbreath on this. The point is not that z is a better term than x or y or that replacing the old terms with a new one will magically make prejudice go away, but rather that having to pause and reflect on what term to use when referring to certain kinds of people functions as a kind of hazard light in the conversation, saying "Warning: Discursive Danger Ahead." And yes, no doubt in ten or twenty years z will be replaced by q, but that will because there will still be prejudice in ten or twenty years and still a need to flash the hazard lights.

but you don't hear about the Sarcoidosis spectrum or the IBS spectrum, so I figured it was saying something more specific.

There's not even a chapter on parents of children with sarcoidosis.

I think LB's explanation makes some sense. Think about "colored person" vs. "person of color." Same meaning denotationally, light years apart in social signaling. While some people here might find POC a wordy term, I doubt anyone would be willing to substitute the more succinct version even in the name of contrarianism.

Of course, not all PC terms stick. In my über-lefty 5th grade class we were told Native Americans were now "indigenous peoples of the Americas," but that term never went anywhere. Also, of course, people in groups can take up differing positions towards terms that describe themselves and it's hard to know as an outsider what the most "neutral" or respectful term might be, e.g. American Indian vs. Native American, black vs. African American. And even, I remember a very impassioned speech by Merle Edgars Williams on why "colored person" should stay in NAACP, which pushed against the argument that identity terms should be used as proxies for political or social attitudes.

87.2: Isn't this reversing, somewhat? I think Asperger's has been backed-up into autism and is no longer a separate diagnosis.

91: Isn't that exactly what the word 'syndrome' is for? (Not a rhetorical question -- I thought that was what 'syndrome' meant, but I'm not sure.) We've got this cluster of symptoms that show up in association often enough that we figure there's a common cause, but beats us what it is?

Right, but Asperger's is as poorly understood as the rest of the spectrum - it just seems to be people dipping from the same pool of traits (less intensely) and no one knows medically why. When there's an isolated medical cause, those people get fished back out of the pool.

107:

That is retarded.

108: well, the collection of symptoms formerly known as Asperger's is no better understood than the collection of symptoms formerly known as Autism-and-not-Asperger's, and also those symptoms are largely identical, if differently severe, so I think the premise is that dividing things up in to 2 rather than into some unknown n is confusing the issue. I think (maybe?) what heebie is talking about is that there are other mental disorders with well-understood etiologies that turn out to produce autism-like symptoms but from which most people with autism do not suffer.

I think the word "Negro" is poised for a comeback.

We know so little about autism (or the brain). Or even about children being developmentally delayed.

For that reason, I enjoy re-reading Berube's essay about ability.

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Now that we're past the 100 comment mark, I wanted to say that this Steubenville case, and the lack of media coverage until now, is seriously fucked up.

http://www.theatlanticwire.com/national/2013/01/inside-anonymous-hacking-file-steubenville-rape-crew/60502/

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We know so little about autism (or the brain).

Obviously, we're all hoping the fMRI studies will reveal the best place to drill the hole in order for the evil spirit to be let out of the skull.

We were so naive when our daughter first showed signs of not developing like other children. We wanted answers. What are the possibilities? What should we do?

In many ways, I would have preferred a direct "We have no fucking clue."

Another useful thing about the "spectrum" language is that the "symptoms" of autism -- while undeniably diagnostic of severe problems with normal functioning, at their extremes -- might well be better thought of as "traits".

To be fair, we know far more about how much we don't know than we used to.

115: There was an excellent piece last month in the Times.

"symptoms" of autism -- while undeniably diagnostic of severe problems with normal functioning, at their extremes -- might well be better thought of as "traits".

Although, and I'm flailing a bit here in trying to figure out how to phrase this, isn't there a meaningful distinction between a characteristic that is a symptom of a larger disorder/syndrome/whatever in the person with that characteristic, and a highly similar characteristic that's not associated with the disorder/syndrome/whatever in another person? Like, if lack of empathy for other people's emotional states were a symptom of autism, and you had two people, one of whom had a cluster of characteristics sufficient to diagnose autism, including lack of empathy, and another person who also lacked empathy to the same degree, but had no other characteristics suggesting autism, wouldn't it be misleading to think of 'lack of empathy' as precisely the same trait in those two people? Given that in the one case, it was probably caused by the same cause as the rest of the autistic symptoms, and in the other case it was probably caused by something else entirely?

I'm not sure I'm even saying anything meaningful here, but there's something.

The horrible town of Steubenville is testament to what can happen when your town is permeated by the spirit of a great institution like Franciscan University, the Father Jonathan Morris of colleges, whose only discernible impact on the surrounding area is the crowds of miserable students it sends to chant outside Planned Parenthoods in the nearby cities.

I haven't read the book. I probably should. The whole concept is strange from the perspective of someone who just chose (twice) not to take on a lifetime struggle of a very different kid (in the best case).

Looking at the site was reassuring, though. It may be a case of "misery loves company," but I find that I like the perspectives of other people who have lost their innocence and expectations that things work out. I wasn't entirely naive before, but I thought that hope and expectations for a baby were appropriate. Now I know that those aren't guaranteed and there's no justice for how they're distributed and there may be no explanations either. Some of the quotes from parents on the website touch on that (and, of course, other aspects that I've never thought of). After last year, I am much more in their club than I am the club of people who still believe things go right.

122: Those LoC people are *scary.* A guy I knew a little freshman year of college (he dropped out to attend seminary) is a macher with those guys now and I'm baffled at how anyone stuck around after the enormous Maciel shitshow. (Although it's not like he didn't know it was going on while it was going on, so.)

Given that in the one case, it was probably caused by the same cause as the rest of the autistic symptoms, and in the other case it was probably caused by something else entirely?

Well, right, your contention would hold if this was true. But as far as I know it's very much an open question whether it is (with perhaps a bias against it being true based on the current best theories).

...the great Pope paused, turned, smiled, and said, "Ah, Steubenville!"

I think Asperger's has been backed-up into autism and is no longer a separate diagnosis.

I think I read that this is the case in DSM-V?

I had almost forgotten that a Slate article* about/by a mother of a baby with Down's was nominally a review of the book in the OP. She did not love the book unreservedly:

It's when Solomon turns to his own life after hundreds of pages of publicizing the diverse, disabled, and combative lives of others that his unreconstructed conventionality emerges most obviously--and his cowardice. When all is said and done, Solomon mainly wants to bank an A-1 baby. While quickly regretting the "economic privilege" required for the engineering of his perfect offspring, he becomes "extremely deliberate about the egg selection." Having prepared the ground for his reproductive missions by marrying his partner in a "shot-gun wedding" at the ancestral estate of the late Diana, princess of Wales, Solomon sifts donor profiles, consults attorneys, and flies around the globe to negotiate optimal parenting conditions.

But when the boy is born and needs a not-uncommon 5-minute CT scan, Solomon is ready to flee. Not merely does he panic, but he finds himself "try[ing] hard not to love" his newborn and has visions of "giving him up into [the] care" of an institution. All this within moments of a very small question being raised about the perfection of his child. All this from the author of Far From the Tree.

125: Huh. Damn -- that's interesting, and I want to inquire and argue about it, and it's not the sort of discussion I have the capacity to do right while also doing the amount of work I have to get done today. If you wanted to ramble on about it at length, though, I'd read it.

Was the Times story in 120 the spur to get Anonymous involved? I hadn't heard about the story at all until Our Fawkes-Masked Overlords started threatening doxing of various people involved.

129: well, I would be bullshitting way more than usual, but put it this way: imagine that there's some cognitive ability that is mediated by the number of axons projecting from the amygdala to the lateral prefrontal cortex (say). Now imagine there was some neurodevelopmental insult that caused the number of those projections to decrease by 10%. Now imagine that the normal, heritable variation in the number of axons is 30% or so around the mean. If you suffered that insult and have 5% fewer projections than the mean you could be behaviorally and neurally indistinguishable from somebody who has 5% fewer projections than the mean but did not suffer that neurodevelopmental insult. On the other hand, somebody who was genetically on the low end already and suffered the insult could be vastly compromised compared to either of you. Now imagine there are forty or fifty such possible insults, and that twenty of them tend to be correlated and also tend to be correlated with paternal age (say). Now suppose that some amount of variation in cognitive ability is caused by the additive effect of neurodevelopmental conditions and genetic factors and whatever; it becomes extremely difficult to say that one person's brain is one way because of X and another person's brain is a little bit less the same way except not-X and thus they are qualitatively different.

I am not optimistic this comment is comprehensible but anyhow.

97 Weird, I would have thought the word "spectrum" specifically connoted "has a 1-dimensional moduli space" whereas according to 90 it's a high dimensional space.

And I would have thought it isn't a moduli space unless it doesn't cost any energy to move from one point on it to another. Separated by a common language!

I keep trying to read Erowid backwards but that doesn't make sense, either.

I know, right?

133: Weirdo.

presumptuous of me to decide, without any input, that the person should be referred person-first

If only there were some way to get some input...

Those LoC people are *scary.*

At first I wanted to read this as "Library of Congress".

I am not optimistic this comment is comprehensible but anyhow

It is completely comprehensible and makes a lot of sense.

134: Dire ow!

136: Just mention Dewey near them . . .

138: And I first read that as "dire owl" -- that owl would mess you up.

Preferences within disability communities are mixed about people-first vs. identity-first language. For example. Generally speaking*, using a dispreferred label is unlikely to actively offend someone and more likely to mark yourself as an outsider who is unfamiliar with the group and its members, which may or may not impact your ability to be the person's new best friend.

*Exceptions include, but are not limited to, calling someone with intellectual disabilities "retarded" or calling me "deaf and dumb".

or calling me "deaf and dumb"

Does this still happen? I suppose in a world in which the Redskins played on tv yesterday, the answer surely must be yes. Uptight liberal cocoon for the win!

If Something Positive doesn't steer me wrong, there are large swathes of America that assume someone in a wheelchair is also intellectually disabled.

The most recent time it happened to me was in a doctor's office, and the person who said it was the doctor.

There are also large swathes of America who assume that deaf people need the Braille versions of menues and airplane evacuation instructions.

menus, too.

US, rather. Possibly the Americas as well.

144: Holy smokes.

144: probably a Redskins fan.

It is extremely difficult to google whether or not anybody has ever proposed "deaf and def".

No wait, review of Bratz the movie to the rescue.

128: I read something else about or from the book that also had several comments about "Or you could just institutionalize! Someone will adopt these children!' and it struck me as a deeply weird attitude to have as a kneejerk response.

My perspective is that we all have different abilities, and the limitations or particularities of our abilities will be 'disabling' in some circumstances (in the simple sense that we will be bad at some things, even while we are good at others). The way we have arranged for social supports in this society means that there are huge incentives to define particular ranges of abilities/disabilities as 'diseases' or 'syndromes' of some type, and to medicalize them. This is because so many helping professions, including doctors but also psychologists, psychiatrists, etc. get their legitimacy from a medical model. Whacking up human diversity into medicalized syndromes has certain advantages (it really does get you more help, it engages a scientific research apparatus in doing taxonomies of your personality type and categorizing regularities, it can protect against stigma). But it also has lots of disadvantages, notably a tendency to emphasize genetics and other physical causes over environmental causes encouraging a certain kind of learned helplessness, and I think impoverishing our picture of how personality works. It also greatly encourages identity politics of various types, which has both positive and negative aspects.

I knew families with profoundly autistic kids back in the 70s, and also kids with defined 'autism spectrum' stuff today. The difference is like night and day, unless someone had attached the same word to the two there is no way I would draw a connection. The autistic stuff back in the 70s was very similar to what Will describes in taking care of his daughter -- in fact some of his stories are spookily similar to things I witnessed helping friends babysit their autistic siblings growing up. The 'autism-spectrum' stuff just reminds me of the geekier/more eccentric kids in computer class, who seem to be doing fine as adults.

My perspective is that we all have different abilities...

Actually, there is a guy in Frederick, Maryland, who has the exact same abilities as I do.

Oh I totally know that guy! He lives just down the street from me.

Tell him he's going to be increasing his core strength this winter.

131 makes sense to me, but I would add that given the plasticity of the brain, I don't see why that 'neurodevelopmental insult' couldn't include that time you were repeatedly stuffed into the trash can in second grade, or when you were five and your parents started fighting a lot and then divorced the next year and your father disappeared and your mother started cycling through weird mean boyfriends. All of that makes it much harder to assign 'normal heritable variety'.

Of course none of this is to say that there aren't levels or types of variance where the medical model is not called for.

Actually, there is a guy in Frederick, Maryland, who has the exact same abilities as I do.

The world is full of people who have the same set of abilities I do, but are a little better than I am in every one of them. Sometimes a lot better.

I'm getting used to it.

151:

Ah, but Bratz isn't done teaching valuable life lessons about how the deaf are just like you and me, only hotter, and way better DJs. In the below clip, the hot hearing-impaired dude learns that being deaf and def are not mutually exclusive when a sensitive Mr. Chizips type teaches him how to fuck shit up old school on the turntables

Awesome.

"Mr. Chizips" would be a great pseud.

My perspective is that we all have different abilities, and the limitations or particularities of our abilities will be 'disabling' in some circumstances (in the simple sense that we will be bad at some things, even while we are good at others).

I haven't thought through these issues, and I know there are people who have and have theorized them in nuanced ways, but this seems intuitively kind of insulting to me. I can't reach the top shelf in our cabinets, but I don't have a height disability. I have no idea where you draw the lines, but to say it's all a spectrum seems weird.

to say it's all a spectrum seems weird

There's a spectrum between things that are on a spectrum and things that are discrete.

I would pay good money for a pygmy dire owl of my very own.

As for Steubenville, I really loved the dispassionate tone of the NYT when reporting the local football coach's tough-guy nose-to-nose threats to the reporter.

145 is awful but also hilarious.

Medically, it is all a spectrum. "Disability" is a culturally-dependent concept related to what things "normal" people are expected to be able to do, and whether or not a given individual can do them. Claiming that we all have different abilities and different limitations is true, but misses the crucial fact that some abilities are expected for full participation in our society, and some aren't. Having a range of ability that is outside the culturally determined range of "normal" renders people unable to fully participate in society. These are the people who are labeled "disabled".

Most of the time, now, in the US, the lines get drawn in the service of legally mandated accommodations. In times and cultures without protective laws, de facto lines get drawn based on whether or not individuals have the wherewithal to pass, cope, or buy their own accommodations.

160: well, I put 'disabled' in quotes exactly because I wanted to question how disability is socially defined, how we translate disadvantages into the social category of 'disability'. In other words, I agree that you don't have a height disability. However, if you experienced being short as really problematic and wanted to get your hands on some human growth hormone you might have to define such a height disability -- see e.g. this story about parents trying to do that for their kids. Height does have significant, measurable effects on life outcomes , or is at least correlated with them.

Those LoC people are *scary.*
At first I wanted to read this as "Library of Congress".

Naturally enough, I defaulted to Lyric Opera of Chicago.

63, 64 - ours has made it onto the noticeboard of loveliness in the downstairs toilet. Was Jammies throwing up or doing some plumbing?

Wait argh I tried to close the window before that posted but it's too late. One of my resolutions is not to say the thing about opera, to see if, over time I can stop being the guy who says the thing about opera.

Pwned by 164. I agree with Messily, but would also say that the definition of 'full participation in society' will always be contested, and also that there is a lot of cultural dependence in which barriers to full participation get defined as disabilities and which don't. A major impairment in a physical sense like sight or hearing seems to be one of the easier calls I guess.

Only tangentially related, but I was in a graduate program that required very advanced math, and I experienced my own math abilities -- which are probably somewhere in the top 10-20 percent of the general population -- as a disability. As in, I definitely felt that there was something in my brain that was making me unable to speed along with the median student in the program, who would probably be well into the top 1% of the population in math abilities. Relative to the general population I'm well above average at math, but in the context of that program the feeling of slamming up against an almost physical barrier in my brain was very pronounced.

If you stop being the person who says the thing about opera, who will take over for you? The ecosystem of the blog demands repetitive schtick.

The point is . . . that having to pause and reflect on what term to use when referring to certain kinds of people functions as a kind of hazard light in the conversation, saying "Warning: Discursive Danger Ahead." And yes, no doubt in ten or twenty years z will be replaced by q, but that will because there will still be prejudice in ten or twenty years and still a need to flash the hazard lights.

I like this.

which barriers to full participation get defined as disabilities and which don't.

Are you thinking of something specific here? Do you have in mind something that you think is a barrier to full participation but that you think is not currently defined as a disability?

I think a couple of you met Nicho/las Wh/yte once at a meetup - he was working for In/dependent Diplo/mat at the time. He has two daughters with very marked autism, one so much so that it became impossible when she was about 11 or so to give her a happy life at home, and a son who is neurotypical. He has a livejournal and has written about some of this under a life(colon)autism tag. He's from NI and his wife from England but they long ago decided they could never move back from Belgium because the services there were so much better.

Those LoC people are *scary.*

I went with "Lines of Code".

172: being extremely timid or shy? (Particularly for man, I think). Growing up very poor? It depends how you define 'full participation' but these can function as barriers it seems to me.

Only tangentially related, but I was in a graduate program that required very advanced math, and I experienced my own math abilities -- which are probably somewhere in the top 10-20 percent of the general population -- as a disability.

I am currently suffering from a supermodelling disability.

Shyness that is bad enough to negatively impact your ability to e.g. get a job is definable as a disability under current rules; you would need a doctor and documentation to verify this if you wanted to get money or accommodations for it, but mental and emotional illnesses/disorders do fall under the disability rubric.

I think you're being silly if you seriously think "growing up poor" should be classified as "disability". If you want to redefine the term so that it doesn't have anything to do with abilities or lack thereof, I guess you can try, but if that's your definition then now being black or being a woman are both disabilities too.

In a way, all of us has a disability to face. For some, shyness might be their disability. For others, a lack of education might be their disability. For us, disability is a big, dangerous man who wants to kill us.

160,176: I feel like this is overlooking the non-negligible expense (time, financial, emotional) of accommodating some disabilities. To be clear, I think the race for reasonable accommodation (tm) is a good thing; but there's a world of difference between my eyeglasses prescription or PGD's feeling bad about being not as awesome at math as everyone in the advanced math class (seriously not a disability, though I'm aware of the feeling) and the accommodations will's daughter needs. "Disability" is a useful legal label for getting funding and assistance, even if there are marginal cases.

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I know people who are really going to struggle with this one but no more masturbating to Huell Howser.

|>

To the "person first" point, I generally think that (a) people get to be called whatever they want, especially powerless folks and (b) these kinds of language identity naming things are an endless and usually pointless energy-sink.

In this particular case, though, my ear does pick up a difference, with "person who is blind" really actually suggesting a human being who happens to be like anyone else but is blind, in a way that "blind person" does not. Given the history, it seems worth it to make the effort (not that I do this myself, but it doesn't come up much).

Wait, he's DEAD?? I knew that California's Gold was going off the air.

The definition in the ADA is

A) a physical or mental impairment that substantially limits one or more of the major life activities of an individual, (B) a record of such an impairment, or (C) being regarded as having such an impairment

where "substantially" is obviously the thing that draws the line between eyeglasses/math aptitude and respite care/interpreters/ramps.

Obviously you can argue about what is or is not substantial, but that's different than saying there is argument about which substantial limitations are included (which is what I took PGD to be arguing, but maybe I'm wrong). If it's causing a substantial limitation, it's included in the current definition.

164 seems perfect to me.

I've mentioned before that I'm pretty sure Mara has no sense of smell, though Lee thinks maybe she's developing one (because she has twice been able to sense that the oven was on and once correctly identified popcorn in a store, which makes me think it's some other kind of sensing of chemicals and not smelling as most of us define it) and I wouldn't consider that a disability. If she grows up unable to smell, she's going to need to learn to wear deodorant, pay attention to how long food has been in the fridge, empty the litter box regularly (which reminds me I haven't tested her on cat urine; hmm) anyway and we'll want to have some sort of gas leak monitor since she wouldn't be able to detect the odor that alerts the rest of us. But unless our culture has changed to a much more scent-oriented one than it is now by the time she's an adult, she's unlikely to have this interfere in her life.

To some extent that may be an example of passing, but it's also that there are differences that don't hold enough cultural value to be significant now. If she were a hunter-gatherer or something and needed to get major input by following her nose, she'd have a disability.

I feel like this is overlooking the non-negligible expense (time, financial, emotional) of accommodating some disabilities.

I certainly don't mean to make light of actual disabilities, it's just that I think not being able to excel in an advanced math class is one of them.

(because she has twice been able to sense that the oven was on and once correctly identified popcorn in a store, which makes me think it's some other kind of sensing of chemicals and not smelling as most of us define it)

The puir wee bairn, born without a Jacobson's organ.

Ok, I just got to an annoying part of the book where a parent is named Peter Singer, and Peter singer the famous guy has already been mentioned in the book, and the author doesn't clarify whether or not these are one and the same, so I had to stop and look it up. (They aren't. But if your book is already 700 pages long, go ahead and insert that clarification.)

I hate Peter Singer (the famous guy) very much.

I have never considered my partial deafness a disability, although occasionally I've wondered if I'm supposed to.

188: me tooooo!

I'm not a fan either.

184: Since I disagreed with Thorn before, which I don't like to do, I want to agree emphatically with her now. Disability theory (or the little I know of it) has helped me see two things. First, what Thorn is talking about, that disabilities aren't inherent in the body, but are instead produced out of the conflict between certain bodies and certain social expectations: whether the inability to smell is as significant as the inability to see has everything to do with how a given society works. And second, what Ari raised at the very beginning of the thread, that the world is not divided between disabled and non-disabled people: rather, disability is something nearly all people will experience, whether temporarily (when they are injured) or at the end of their lives.

The famous guy is handled pretty dismissively in this book.

disability is something nearly all people will experience, whether temporarily (when they are injured) or at the end of their lives.

I think this is headed in the right direction, but temporary disability due to injury and end-of-life disability due to natural aging processes are qualitatively very different from chronic or permanent disability.

In the valley of the blind, textured wall coverings are strongly discouraged.

And also, unfortunately, the world is totally divided between disabled and non-disabled people. By curbs and stairs and whether or not you can use taxis or go to movies. It would be nice if this were not the case, but just claiming "it's a spectrum and we're all the same inside" makes it harder, not easier, to make progress.

In the valley of the blind, textured wall coverings are strongly discouraged encouraged.

For navigation.

The one eyed man wants to keep the people oppressed.

185: I was agreeing with you, and I also agree with E. Messily.

Which wasn't obvious because of the numbering fail.

I always thought that was the dumbest saying. In the land of the blind, the one-eyed man would be burned as a witch or locked up in an insane asylum.

He can't pass?

In the land of the blind, the one-eyed snake hides in the popcorn.

In the land of the blind, the one-eyed man who can learn when to keep his mouth shut is king.

I mean, he could try, but the real blind people would probably be able to tell using their hopped-up senses of smell and hearing. "Why is your eye making that noise? Are you.. are you FOCUSING on something?"

The Twilight Zone episode practically writes itself!

196: I don't at all mean to suggest that we're all disabled in some way. Rather, that temporary experiences of disability can afford people who think of themselves as able-bodied some sense of what it's like to be permanently disabled--and can therefore prompt them to support the kinds of accommodations the permanently disabled need. That's was useful, to me, about that framing of disability.

Put another way, I agree that there's a vast chasm between my needing crutches for six weeks and someone else needing a wheelchair for the rest of her life. But there's also an important difference between being able to walk normally and needing to use crutches--and that's what Ari was referring to up thread, I think. In my own very minor experience, I very quickly recognized that my difficulties lay only partly in my broken ankle but equally in a campus policy of shutting down the elevators at five even though I needed to stay in the building at six. And this made it possible for me to recognize the social constructedness of many disabilities--and to become much more vigorous than I already was in support of accommodations.

The Twilight Zone episodeallegory practically writes itself!

206: It's a story by H.G. Wells, actually.

In the land of the blind, the one-eyed snake hides in the popcorn.

Why are there movie theaters?

You can have popcorn other places, heebie. Think about jackmormon's family; they're up to their necks in the stuff by now.

Rather, that temporary experiences of disability can afford people who think of themselves as able-bodied some sense of what it's like to be permanently disabled--and can therefore prompt them to support the kinds of accommodations the permanently disabled need.

In some cases they become extremely interested in accommodations for people in their lived situation and none other. (Not to deny what you say.)

211: One-eyed snakes?

Actually, popcorn sounds like the perfect thing for me to make and get me back to focusing on work.

I am currently suffering from a supermodelling disability.

Or is it that supermodelling is suffering from a Blumeless disability? BOOM!

209: Ha.

I've actually seen less cartoony versions of this play out in real life when hearing people who just started learning ASL show up at Deaf events and try to describe all the sounds/music/etc. Their reception is generally not positive.

216 to 213.

How much sound and music does your one-eyed snake make, Sifu?

"Why did I get the smallest red mark?

218: I have described it in this popcorn.

Can you add captions or an interpreter to your popcorn please, thank you.

Leela: "You know, Zapp, someone ought to teach you a lesson."

Zapp Brannigan: "If it's a lesson in love, watch out! I suffer from a very sexy learning disability. What do I call it, Kif?"

Kif: [Sigh] "Sexlexia."

221: here you go.

it became impossible when she was about 11 or so to give her a happy life at home

My daughter's mother and I fear this day as much as we look forward to the freedom that it might bring. We are somewhat fortunate in being divorced so that we get a break half of the time. We somewhat joking suggest that the other parent should feel free to assume primary responsibility of our daughter. "Go ahead! You take her!"

I do fear that her mother is going to bail on her half of the time. That would change my life dramatically.

Don't get me wrong. I love, love, love my daughter. I cannot wait for her to go to UnfoggedCon III so she can hug each of you.

207: in part, that's what I meant, though I have to say, as it's becoming possible that my (still very minor, it must be said) disability may be permanent, my changed capacities are beginning to shape my identity. To be clear, I'm not suggesting that my experience is exportable, because I think identity is both too idiosyncratic and fluid for universal pronouncements. So this is all just personal and thus almost certainly very boring to anyone who isn't me or who isn't interested in my well-being and sense of self.

But in my case, at least, so long as I felt reasonably sure that I would, some day, be able to make my way to the bottom of the long flight of steps in that one tiered classroom, or that I would, once I healed up, be able to get across campus without help, it seemed possible to think of myself as injured rather than disabled. Now, though, as it's becoming increasingly possible that I won't ever again be able to move the way I could as recently as last fall, the hurdles that are in my path seem more likely to be permanent, and I'm maybe considering starting to think of myself as a (somewhat, and not very at that) disabled person.

212: Yeah, unfortunately it seems that the temporary experience of not being a right-wing asshole does not afford significant insight into the permanent experience of not being a right-wing asshole.

And Von Wafer, not boring at all. This is a significant set of changes you're going through, and I'm glad you're talking about them.

anyone . . . who isn't interested in my well-being and sense of self

May the Devil take such treacherous fools as these.

224: This is nosy and intrusive, so tell me to back off if you like, but I was wondering if you have a plan for two or three decades from now, when you may not be physically up to caring for her any more. My inlaws are looking at a similar situation with my brother-in-law; they're in their seventies, and not in good health.

226: no, it is boring. I only brought it up because I think the line, for me at least, between disabled and injured has to do with permanence. So long as I can/could imagine myself returning to my old capacities, I remained "injured." But as the reality of new set of physical boundaries becomes permanent, I may be disabled. I'm not sure if someone said this above -- Messily? maybe you? -- but if so, I'm agreeing.

Also, not that everyone didn't already know this, but it really is a able-bodied person's world out there. And while I mostly don't resent the new me, I do resent the people who walk toward me and, even if I'm all the way to one side of the sidewalk, can't move over a bit to make some room. "Actually, if I'm not on the sidewalk, it's quite possible that I'll fall. And if I fall, whether because I tried to walk on uneven ground or because you couldn't be bothered to move over to your own sidewalk lane, getting back up isn't happening for me without help." Not to mention, that one tiered classroom on the other side of campus is absolutely fearsome. Fortunately, I have grad students to carry me around in a sedan chair.

You definitely need a cane. Even if you don't need it to walk, having visible evidence of disability will clear the sidewalks in front of you I bet.

231: I hadn't thought about that. Yeah, I guess that's the next step. That's disability humor gold, right?

Seriously, though, Wayne LaPierre says I should get AR-15.

You definitely need a cane. Even if you don't need it to walk, having visible evidence of disability punching people in the balls with it will clear the sidewalks in front of you I bet.

You definitely need a cane. Even if you don't need it to walk, having visible evidence of disability you can add a monocle and top hat and go naked, à la Mr. Peanut, which will clear the sidewalks in front of you I bet.

Also Heebie knows where to get the kind where the top unscrews and there's a flask in it. Multipurpose!

You definitely need a cane giant wizard staff. Even if you don't need it to walk, having visible evidence of disability [insert some sort of LOTR reference which I'm not geeky enough to know].

237: Balrog something something you cannot pass.

Re:237

Which he can bang on the floor in front of his students and roar: 'YOU SHALL NOT PASS!'

Fuck.

Well, you got the quote right.

"Fine. I'll just audit."

Knob on the end.

What was the result of that thread just the other day--are sword-sticks legal in CA?

224: in a different vein, I know some parents of adults with Down Syndrome living at home who regret that they didn't transitioni towards the offspring living part of the week in whatever group /sheltered / independent living situation was available and appropriate - the parents are now getting elderly and the adult child is maybe 30 + and far less flexible / able to deal with changes which will have to come when the parents die.

Being trapped in a rental Prius is the motoring equivalent of a limp. It makes you slow, feel old, and is a harbinger of a bleak and constrained future.

So it saves gas and makes you smarter.

there's a world of difference between my eyeglasses prescription

My very non-expert understanding when I got glasses and then contacts was that whether or not you're considered to have a disability with respect to vision has to do with whether you have "correctable" problems. So as long as I could get lenses that work, I'd be considered not to have a disability - even with things like "needs corrective lenses" written on my driver's license.

I participated in a website accessibility study recently that had me rethinking my mostly unreflective understanding. I found that, when asked about whether I had a disability, I had to think carefully about my strong nearsightedness; fortunately, the study allowed a free form answer. I find that though I don't need to use screen-reading technology, even with my lenses on I make a lot of use of accessibility features that allow re-sizing fonts and modifying backgrounds/color schemes. And the lack of real accessibility settings was a huge problem for me using webOS, to the point of making me feel real physical strain but fortunately not headaches.

This is not really something I noticed much with books - I don't need to use large print and even prefer "standard" (but not small type) printed fonts - when I got used to putting my lenses on and mostly forgetting about them.

I hit post too soon. I don't mean to deny the "world of difference" part of the comment I quoted. I was just commenting on the idea of needing a prescription as a disability.

Vision loss is actually much more defined (meaning both there are more definitions, and the definitions are more precise) than most other disabilities. The Blind Lobby has its act together. So there is a preset definition for legal blindness based on correctable vision (better eye corrected is no better than 20/200) in a way that there is not for most other disabilities (where you have to jump through more hoops in order to qualify for things).

That said, the legal definitions of disability are really only relevant if you are (a) trying to get SSI money, (b) trying to force someone to provide accommodations and they are resisting, or (c) suing someone for discrimination. As far as who actually needs some sort of accommodation or identifies as a member of a disability community, the category boundaries are much fuzzier. For the purposes of web accessibility, for example, color blindness is usually taken into account, even though it's not generally something that would constitute someone identifying as "disabled".

(250 for the US only)

10: Thorn, I love you for saying that. "Raising kids with autism" or "Raising kids who have autism."

PGD speaks a lot of truth. In my work there is a huge gaping intellectual inconsistency.

First you have the people who are seriously impaired and yet resist any kind of label of "mentally ill" preferring to say that they have experienced "extreme emotional states.

The whole model of psychiatric rehabilitation is that you start with people's strengths and then build on them, providing them with supports or teaching them skills to get what they want. However, there is no money for that outside Medicaid Rehabilitation Option. Based on a medical model, we are supposed to say what problems people have, i.e., psychiatric barriers, which keep them from getting what they want, e.g., anxiety. And we are often pulling it out of our ass with areas like "problem solving skills" or "coping strategies" or "symptom management."

We are supposed to make plans for people which are based on what they want but we have to tie it to a recognized need area which is based on a medical model of deficit.

We also have this thing called the Milestones of Recovery Scale which tries to measure functioning and not just symptoms, the idea being that you could hear voices and still hold down a job and be happy. One of the things that we are supposed to evaluate people on (and it affects whether you're a 6 or a 7 on an 8-point scale) is whether the person may identify as having a mental illness but no longer sees him/herself as 'disabled'. We are supposed to judge people on whether they have meaningful roles in the "non-disabled" community.

It's partly about inclusion in society with things like "competitive employment" and not shunting people off into sheltered workshops, but it's all deeply weird.

I haven't read the whole thread, so maybe someone made this point, but preferences about "people first" language are not uniform among people with disabilities. Here's an example.

It's a long thread. If you're short on time, I'd read the one where we were trying to plot the first unfogged coup.

First? How did we depose ogged, then?

57

This is going to sound either unpleasant or insane or something, but I kind of think that part of the point of a lot of types of PC language is just the change in terminology -- that any word or phrase used to describe something that people are prejudiced about will accumulate unpleasant connotations, and there's a value even to arbitrary changes every couple of decades. ...

This is backwards, a new term isn't needed because the old one has acquired negative connotations, the old term acquires negative connotations because a new term has been invented and most people have been harassed into using it. Making use of the old term a marker of political incorrectness.

Holy trolly basket of bullshit, Shearer. That's some brave work in the stupid sector, even for you.

Well, Messily, the niggers were happy and danced while they picked the cotton -- until the outside agitators insisted that they be called African Americans. That's when the trouble started.

259

Speaking of the word "nigger" was it ever non-pejorative?

What the fuck, James. Read a history book. Read more than one! Actually just keep reading them. Don't stop reading, not even to comment on unfogged.

261

I was under the impression Van Wafer is a historian. People defend Huckleberry Finn on the grounds that "nigger" wasn't pejorative when Twain wrote it, is this true?

Anyway what I was saying in 257 doesn't apply to words which were always pejorative.

Messily gets it exactly right.

257: James, I love you like a brother, but that is rubbish.

You have shitty brothers, Flip.

101: Who doesn't love Edward Gorey?

Speaking of whom, this looks like a wonderful book, and check out the link for some great Gorey envelope drawings. Also ""E. Gorey's Great Simple Theory About Art" (which has cheered me immeasurably the last couple of days):

This is the theory... that anything that is art... is presumably about some certain thing, but is really always about something else, and it's no good having one without the other, because if you just have the something it is boring and if you just have the something else it's irritating.

257 is impressively idiotic, but it is possible for old terms to acquire new, specialized senses as they get replaced by new ones, as in the hoary cases of "brethren" and "kine". Shearer's suggestion does not become more plausible for acknowledging this fact, though; it's just independently interesting.

||

My mother is able to recite the ISBN prefixes for arbitrary publishers of sufficient size by heart.

|>

arbitrary publishers of sufficient size

So like William Randolph Hearst?

Like St. Martin's or New Directions but not Podunk University Press.

arbitrary publishers of sufficient size

I don't believe they exist.

267.2 I used to be able to do that, but they've reformatted the ISBN since my time and they all look weird to me.

254. This is very true. I've got into some fairly unpleasant arguments even at the level of "person with disabilities" vs. "disabled person" (my personal preference), let alone once you get into distinguishing the appropriate terms for specific things.

re: ISBNs

For a while I could translate Chinese medical journal names, despite not knowing a word of Chinese. The result of a (summer job) project classifying Chinese medical/pharmaceutical papers for a database project.

Who doesn't love Edward Gorey?

This has likely been pointed out sometime in the past couple of years, but The Recently Deflowered Girl is back in print now.

First you have the people who are seriously impaired and yet resist any kind of label of "mentally ill" preferring to say that they have experienced "extreme emotional states.

Like the infamous necromancer Achmed the Mad, who preferred to be known as Achmed the I Just Get These Headaches.

273: doesn't this mean you've demolished John Searle's best known thought experiment?

Or confirmed it, I forget.

I thought it had been demolished in umpteen different ways, years ago.

38: In case no one's mentioned it, there's a German movie with the hearing child of deaf parents storyline: Jenseits der Stille/Beyond Silence. Very good. Certainly explores the identity themes of this thread. Recommend!

This is nosy and intrusive, so tell me to back off if you like, but I was wondering if you have a plan for two or three decades from now, when you may not be physically up to caring for her any more. My inlaws are looking at a similar situation with my brother-in-law; they're in their seventies, and not in good health.

Not too nosy. I do not aniticpate that she will be living with me five years from now.

I'm not sure I think of my own sexual orientation as defining enough to be an identity rather than an attribute.

That must be nice!

Sorry, HTML tag switching off "humorless" after comment 281. For some reason the comment had been itching at me long enough that I posted it on a perhaps defunct thread.