Friday, November 15, 2013

The Trouble with Long Shots ...

... is that they so rarely hit their targets.

The long shot to which I refer is John Elder Robison's three-year effort to nudge Autism Speaks's research funding priorities toward therapies that help make autistic people's lives easier, as opposed to determining causes and finding ways to prevent more autistic people from being born.

From a 2010 blog post explaining his reasons for accepting the position:
One of my principal areas of concern will be identifying and funding studies that have high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS [i.e., transcranial magnetic stimulation] work I'm involved in at Harvard/Beth Israel is a good example of work that can lead to better lives for today's autistic population. 
In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That's going to be a real challenge because the views of different people on the spectrum are so widely divergent. 
When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization's focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.  
... and another one going into greater detail about his role on the advisory board and how he hoped to make use of it:
... [T]he [research] proposals that made it through the initial screening reach the review board - the place I serve. Proposals are dealt out to members of the board for a first ranking. Much of the time, three reviewers read each proposal. They may be assigned randomly, or they may be dealt out by expertise. However they are allocated, if there are 30 of us on the board, and there are 100 proposals to deal with, we will each be assigned ten.

We will rate the proposals we are given in several areas, like the impact on the community, how likely the work is to succeed, and whether it's truly new research or a rehash of something already covered. Each area is scored from 1-5, or perhaps 1-7. So a proposal that I (or any of us) rated 4,4,5,5,3 in each of five areas would have a composite score of 4.2. 

The three initial reviewer scores are combined for a total score, and proposals are ranked based on this first pass. At that point, staffers take the funds available for allotment and they see how far down into the ranks the money goes. For example, if we have twenty million dollars to distribute, that might be enough to fund the top third of the applications.

Given that, the agency takes all the proposals in the top third, plus a cut of the next tier, for final review. That's where we all discuss them, and we all vote. And that's where any one voice can matter a lot. I'll give you an example. Let's say a piece of research involves social skills training, and most of the scientists give it a 3 for importance. But I feel that it's a really important proposal, based on my life experience, so I speak up. By doing so, I cause people around the room to rethink the proposal's importance, and a number of people move their score from 3 to 4 or even 5. The result: that proposal's average score rises, which moves it from "not good enough to fund" into the "recommended for funding" category.
Now, following the publication of this op-ed article from Autism Speaks founder Suzanne Wright on the organization's website, Robison has resigned from both of the boards he had been sitting on.

Here is his post explaining why he did that.

I care about this, and am saddened that Robison feels like he hasn't been heard, even though I pretty much consider Autism Speaks to be the enemy, because I did have a sliver of hope that he could shift their priorities a little, and through them get funding for projects that might help people, and that might not get any funding otherwise*. (It's not like the NIH or NSF are drowning in money these days ...)

Now that he's stepped down, that sliver of hope is gone. I have no reason to extend even the slightest, most infinitesimal modicum of goodwill to Autism Speaks. 

It had already been my practice to discourage people who wanted to Do Something for Autism from donating to them and recommending other charitable organizations that do more for actual autistic people, so I guess I will be doing more of that! I will also be contacting my Representative and Senators and telling them that Autism Speaks doesn't speak for most autistic people, and that they should not think that allocating money to them will make any difference to autistic people or their families.

Once again, here is a list** of autism-related charities*** I consider more worthwhile than Autism Speaks:

AAPD - American Association of People with Disabilities

AASPIRE - Academic Autistic Spectrum Partnership in Research and Education


ASAN - Autistic Self Advocacy Network

AWN - Autism Women's Network

DREDF - Disability Rights Education and Defense Fund

Easter Seals

National Disability Leadership Alliance

National Disability Rights Network

NOEWAIT - National Organization to End the WAITlists

Not Dead Yet

SABE - Self Advocates Becoming Empowered

TAAP - The Autism Acceptance Project


The National Council on Independent Living

*They still would have been the enemy, and I still would've encouraged people not to donate to them, and my ideal scenario would still have been that they should dissolve, and clear the field for less harmful organizations. But people can work on that objective while other people --- like Robison --- work on others, like getting more of their grant money to projects that might help improve quality of life for some autistic people! We can walk and chew gum at the same time. (Well, metaphorically if not literally. I cannot literally walk and eat something at the same time, but I can simultaneously favor more radical long-term strategies and short-term harm-reduction measures. My mind is nimbler than my body.)

**There are going to be more names on this list than there were the last time I did this, because I've found out about more organizations.

***Includes cross-disability organizations

Sunday, November 3, 2013


I carved a lot of jack-o'-lanterns this year:

I really like how the four around the big one turned out, but I'm not as sure of the big one itself. It was supposed to be two faces, split down the middle --- one grinning, one scary. I'm thinking now that that might've come across better if I'd made some sort of division between the faces: a positive/negative space thing or some kind of dividing line, like a jagged scar or something.

Here I am holding it, if you want a closer look:

Saturday, November 2, 2013

Jerk Tweets Sexist Remark, Prompts Me to Muse About the Meaning of "Freedom"

"Feminism is the radical notion that women are people" - Cheris Kramarae and Paula Treichler
It took a long time before this saying made any sense to me. Surely everyone knows that women are people, right? What else would they be? Space aliens? Robots? Very convincing holograms?

That was a joke --- I knew, even when I first heard the saying, that it was referring not to the tautology that female Homo sapiens are Homo sapiens, but to the philosophical concept of personhood. At the time, though, I couldn't imagine that anyone did not extend personhood fully to women, so the saying still struck me as bizarre.

Well, here is a wonderfully clear example of someone doing just that:
Tweet from Pax Dickinson saying "Women's suffrage and individual freedom are incompatible. How's that for an unpopular truth?" Image taken from the Public Shaming tumblr
This guy was, until recently, the Chief Technology Officer at Business Insider, a popular news website with an emphasis on business and technology (particularly information technology) news.

But I don't care so much about who the speaker is so much as I do about what he is saying: Women's suffrage and individual freedom are incompatible. What? People are freer when fewer of them can vote? How does that make any sense?

I would submit that it only makes sense when you assume that the "individuals" he's talking about are men. Women's freedom is compatible with women's suffrage --- see recent elections in which women's votes made the difference between a Republican rape philosopher and a more liberal (if not always pro-choice) Democrat.

Women's votes made the difference in 2012 in the Indiana U.S. Senate race between Richard Mourdock (the "pregnancy from rape is God's will" guy) and Joe Donnelly*, in the Connecticut Senate race between Linda McMahon and Chris Murphy**, in the Massachusetts Senate race between Scott Brown and Elizabeth Warren***, in the Ohio Senate race between Josh Mandel and Sherrod Brown****, in the Pennsylvania Senate race between Tom Smith and Bob Casey*****, and in the Virginia Senate race between George Allen and Tim Kaine. 

Women's votes failed to make the difference in the Wisconsin Senate race between Tommy Thompson and Tammy Baldwin, and in the governor's races in Montana and Washington --- if only women had voted, the Democratic candidates would've won those races, but the Republicans' advantage among men was strong enough to carry them to victory anyway.

(It should be pointed out that, for the most part, abortion and other "women's issues" do not drive the gender gap in voting behavior --- there are much bigger differences between the sexes on whether to strengthen or cut back the welfare state and whether to pursue a hawkish or dovish foreign policy, according to Rutgers University's Center for American Women and Politics. The hard-right candidates that women voters rejected in 2012 espoused both extreme anti-abortion, anti-contraception positions and a desire to greatly diminish the welfare state, so it's hard to tell whether their anti-choice zealotry was the deciding factor in alienating women voters. But the fact remains that, if only men had voted, a lot more of those anti-choice zealots would be sitting in Congress today.)

So, besides being more likely to vote against candidates looking to curtail their reproductive freedoms, women also vote for candidates they think will strengthen the social safety net. What does that have to do with personal freedom?

Well, I think having a robust social safety net is critical for maximizing individual freedom: there are a lot more choices available to you if you don't have to worry about losing your home and being unable to feed yourself and your family if you lose your job. You're more free to blow the whistle if you think your employer is doing something unethical, to fight against what you see as unfair or exploitative working conditions, and to engage in political activism or commentary outside of work without being afraid that these things will cost you your job. You are also more free to leave a job for whatever reason. There's a reason FDR named "freedom from want" as one of his Four Freedoms, and why he used that word --- freedom --- instead of, say, "rights" or "entitlements" or "needs."

There's also a subset of welfare-undermining measures that serve only to criminalize poverty, to subject people needing government assistance to intrusive, degrading treatment and erode their freedom. Things that fall into this category are mandatory drug testing for welfare recipients, requiring welfare recipients to document that they spent a certain number of hours each week either working or engaging in approved job-seeking or job-preparatory activity, tying the amount of money a family receives to how well their children are doing in school, or requiring people applying for welfare to be fingerprinted.

People who favor such mean-spirited measures usually think there are legions of idlers living on welfare just because they don't want to work, and spending their benefits on luxury items. 

(They are mistaken --- almost every form of public assistance that exists in the US is time-limited or situation-specific, like unemployment insurance (which expires after a certain number of weeks that varies by state), the program people are usually thinking of when they say "welfare" (which is officially called TANF: Temporary Assistance for Needy Families, which has, among many other limitation, a five-year lifetime cap on benefits), or WIC (which you can only get if you are pregnant, nursing, or have children younger than five years old). The one program that doesn't come with a predetermined expiration date is food stamps, which you can only get if you make 130% of the federal poverty rate or less, and which you can only use to buy food).

But whether or not the idlers exist, it's important to focus on the fact that these people --- the people who favor draconian measures to curb welfare fraud --- are more concerned with ferreting them out than with getting aid to those who need it, and subjecting those people to minimal state intrusion and hassle. That does not sound like a person who is concerned with human freedom; to me, that sounds a lot more like a person who cares little for people and a whole lot for pinching pennies.

There are some personal-freedom issues on which women tend to favor more restrictive policies than men do: according to this poll, women are less likely than men to support legalizing marijuana, to give just one example. But the conclusion one draws from that, taking into account everything I've said above, isn't that men are pro-freedom and women are anti-freedom; it's that most people favor at least some restrictions on individual freedoms, and that there are some differences between the sexes in terms of what should be allowed and what should be forbidden. The only way you arrive at "Women's suffrage is incompatible with individual freedom" is by defining "individual freedom" so selectively as to leave out any personal-freedom issue on which women are more liberal than men.

*Donnelly is pro-life, but unlike Mourdock he would allow an exception to a general ban on abortion for victims of forcible rape. He also voted for the Affordable Care Act and for the reauthorization of the Violence Against Women Act.

**McMahon supported the Blunt amendment, which would've allowed employers to opt out of providing insurance coverage for contraception. She also wanted to repeal the Affordable Care Act, which is slightly more popular among women than among men (i.e., for women it's almost a 50/50 split, while men are opposed by a slim majority). 

***The biggest issue at stake in this race was obviously regulation and reform of the financial sector, which is not a "women's issue" but is, according to Rutgers University's Center for American Women and Politics, a greater priority with women voters than with men, though this poll shows huge majorities of both sexes favoring reform.

****Mandel seems to have campaigned on his opposition to the Affordable Care Act, and the fact that his opponent, Sen. Sherrod Brown, voted for it. Mandel also opposes abortion, same-sex marriage and including sexual orientation and gender identity in anti-discrimination laws. 

*****Casey is pro-life, but unlike Smith he would allow an exception to a general ban on abortion for victims of rape or incest, or if the life of the mother is in danger. He voted for the Blunt amendment, but has also voted to protect Planned Parenthood's federal funding under Title X, and to rescind the Mexico City Policy (aka the "global gag rule" forbidding aid organizations from even referring people for abortion services). He also supported the Paycheck Fairness Act and introduced a bill to require colleges to do more to prevent (and track, and prosecute) sexual assault and domestic violence. Smith, as I mentioned, favors a total ban on abortion with no exceptions, and is one of the lesser-known Republican rape philosophers.

Saturday, October 5, 2013

Shelter from the Storm

So my cat, Magic, is afraid of thunder. She has a special place where she always goes when there's a thunderstorm --- at the top of the stairs, off to the side where there's a sort of fenced-in ledge for her to sit on and overlook the people (and other cats) coming and going on the main floor.
She likes closed-in spaces.
There's an end table opposite the ledge, so it's a very snug fit indeed!
She's very cute when she sits there, and it usually calms her down --- it's not uncommon for her to go to sleep there, thunder or no thunder. So I tried to take a few pictures of her; she has a certain posture that she always adopts, with her front paws pressed together under her chest and folded over the ledge.
Magic sitting in her special spot. She's got greeneye* because I can't control the flash.
"Quit taking pictures of me, you weirdo!"
*Does anyone know why cats get greeneye instead of redeye? What's different about their eyes? Is it lens shape?

Thursday, October 3, 2013

The Most Bizarre Autism Hypothesis Yet

Banner ad for a video and ebook promising to explain how "Global Elite Uses Vaccines to Create Autism", and also "How Autism Profits the Globalist Cronies"
A commenter on one of Orac's recent posts linked to this website, which lays out one of the most ludicrously counterfactual Autism Hypotheses I've ever seen: the global elites are deliberately making people autistic (using vaccines, obviously) because autistic people make better, more docile workers.
Graphic from anti-vaccine crank website showing the All-Seeing Eye as it appears on the Great Seal of the United States, as the capstone floating above a pyramid, with the Eye of Sauron photoshopped in as the pupil of the eye. The words "Neo Aristocrats" are superimposed over the eye, and over the pyramid below are the word "Servants" with a red line below it, and the words "Delta Technicians" (a reference to the caste of developmentally disabled menial laborers from Brave New World) below that. Below the picture is a quote from Lord David Freud, a Conservative member of the UK's House of Lords, in which he talks about the benefits to businesses of hiring autistic workers. He says, "... it makes good business sense to employ people who are reliable, punctual and loyal; people who have good attention to detail and concentration levels..." Indeed it does! But that doesn't mean people are running around zapping people with Autism Rays, or even hiring as many of us as there are who need jobs.
Now, if you're like me, you moved right past the first two absurd premises --- vaccines cause autism and big pharmaceutical companies want to make people sick --- because you've heard them so many times. No, what floored me was the immense, crushing irony of their believing that autistic people make such desirable employees.
There's that Brave New World reference again
Do they not know how many of us are unemployed, underemployed or mal-employed*?

They cite Goldman Sachs UK's recent decision to offer (paid!) internships and job placements to qualified autistic people in London as proof that autistic people make desirable workers, but they totally miss the fact that the company had to set aside these positions specifically for autistic applicants. Not only that, but this program (and others like it, at other firms like SAP and Freddie Mac) represents a long-overdue first step toward integrating autistic people who are willing and able to work into the mainstream economy. A first step. A departure from the way things are normally done. And a drop in the bucket compared to how many autistic people are still shut out of the conventional job market.

There is definitely a flaw in your plan for world domination if you've designed the perfect army of loyal minions, but most of them can't get a job working for you.

*Malemployment, if you didn't know, is Mark Romoser's term for the scenario in which a lot of autistic adults find ourselves: working at a job far below your skill level and at a task for which you are unsuited. Like, say, an autistic person with an advanced degree working food service, where they struggle to keep up with people's orders and to talk to customers and prepare food at the same time. Romoser wrote an article about it, but it is behind a paywall. You can buy the article from Amazon for a lot less than you would pay if you got it directly from the journal (i.e., six dollars as opposed to fifteen), but it's still not free.

Wednesday, September 25, 2013

What Is Your Regional Dialect of American English?

Razib Khan at Gene Expression linked to a very interesting --- but lengthy --- quiz designed by a statistician at North Carolina State University. It's meant to show you which regions of the USA your speech most closely matches.

It asks you all sorts of things, about everything from vowel pronunciation to word usage to idiomatic expressions to which syllables in a given word you stress, and when you're done, you get a lovely map with big blobs of color showing the areas of greatest --- and least --- similarity to your own speech.

Here is mine:
My dialect map! I am clearly an Upper Midwesterner, but the rest of the Midwest and Mountain West aren't too far off. The South and New England, though? Might as well be another country. 
It also gives you two lists of five cities that it thinks are closest to and furthest away from you in their local dialects. 

My best match is Grand Rapids, Michigan, followed by a four-way tie between Lansing, Michigan; Rockford, Illinois; Flint, Michigan*; and Cedar Rapids, Iowa. (The lattermost city is actually one I've spent a lot of time in. I've been to Michigan --- went to science camp on the Upper Peninsula of Michigan in high school --- but haven't lived there).

My worst matches are mostly in the Deep South: Huntsville, Alabama; New Orleans, Louisiana; Metairie, Lousiana**; and Birmingham, Alabama. The one exception is Plymouth, Massachusetts.

That map is particularly visually striking in its division of the country so neatly in half --- it looks like someone drew a line diagonally from the Michigan/Ohio border on the western shore of Lake Erie to the southwest corner of New Mexico, and dyed the top half red and the bottom half blue. There's a bit of an intermediate belt, especially toward the West Coast, but all across the central part of the map the red and the blue are right up next to each other. 

They give you a numerical value for each city on either list; that number refers to the probability of any random person in that city giving the same answer to any random question on the quiz that you gave. The map makes the differences seem starker than they are --- the spread between my highest- and lowest-scoring cities was only about eight points. This makes sense when you consider how young a country the US is, and how relatively uniform American English is compared with, say, British English*** or other European languages like Dutch, German, French, Italian, Spanish and probably zillions of others, which have dialects so different from one another (and from the standard language, which American English doesn't really have --- probably because we don't need one yet) that a speaker of, say, standard German would be unable to understand a German-speaking person who speaks Low German or any of the High Franconian or Upper German dialects.

At the end of the quiz, the ask you where you live now and where you spent most of your childhood; they also ask if you are a native English speaker, so maybe if you're not they will ask you about your native language. The data it draws on are restricted to continental American English (i.e., the US minus Alaska and Hawaii), so I don't know how enlightening it will be to someone who speaks any other form of English. I could see it being of interest to non-native English speakers who learned American English; maybe it could tell you something about where the person who taught you English was from!

*So, if people reading this blog ever try to imagine my voice, you could probably do worse than imagining my words read by Michael Moore. Except for the part where Michael Moore is a guy, but whatever.

**I didn't know there was a Metairie, Lousiana. It has a beautiful name, even if it is apparently one of the five places in the nation where I am most likely to have serious trouble making myself understood.

***I would expect Canadian and Australian English also to have regional dialects that are still pretty similar to each other overall, what with their having a similar history of being a British colony at around the same time. I don't know this, though, so it would be nice to have confirmation --- or contradiction, for that matter --- from any Canadian or Australian readers I might have.

Saturday, July 27, 2013

All Developmental Disability Is Autism?

Amanda Forest Vivian pointed out something interesting in this post (about a singer using the words "autistic" and "retarded" pejoratively, and then apologizing for it): People seem to be confusing autism, one particular developmental disability, with developmental disability in general.

Here is what she says:
There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism. Now the opposite seems to have happened--for example, when people find out I work with someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being "autistic"--even though intellectual disability is the most common developmental disability!
I thought of two reasons why this might be happening, one simple and one not so simple. The simple explanation is all the Autism Awareness campaigns --- people are hyper-aware of autism (aware that it exists, anyway; maybe not always of what it is), and have forgotten that other developmental disabilities exist. (Or maybe it's not so much that they've forgotten, but that the concept "autism" is always lurking near the forefront of their minds, ready to be applied to any person whom they might previously have categorized as retarded, crazy, spastic, etc.)

Also, with how much talk there is of an Autism Epidemic, people might be expecting to see autistic people a lot more frequently than they used to. In some ways, this is good --- people know that we exist, and that we live right alongside them and do many of the same things that they do --- and in some ways it hasn't gone far enough --- people don't seem anywhere near as aware of the existence of autistic adults as they are of autistic children --- but maybe it has also made it so that people expect to see more autistic people than there are, and maybe they're filling up the gap between how many autistic people they expect to see and how many autistic people they do see by lumping other developmentally disabled people into that category. 

It's annoying because autism is not the same as other developmental disabilities, and autism awareness at the expense of other disabilities might make it harder for people with other disabilities to get people to understand them, or make the accommodations they need as opposed to the accommodations autistic people are understood to need.

The second, harder-to-explain thing that occurred to me was that maybe the substitution of autism for developmental disability in general might reflect a value judgment*.

Non-disabled people are afraid of disability. They're afraid of disability because they know it could happen to them (or to their kid, if it's a developmental disability), and because this is an ableist culture that tells people that a life with disability is akin to death**. (Though, mercifully, I think there might be starting to be a little pushback on that point making it into mainstream consciousness --- disability activists have always said that our lives are worth living, but now a few scholars and journalists, here and there, seem to be listening.)

I think Western culture also fetishizes intelligence***, and sees it as one of the few things that can make up for the monstrous faux pas of having a disability in the first place.

You can see a marked difference in how allistic people talk about the autistic people they see as "low-functioning" --- i.e., having intellectual disability**** --- versus those they see as "high-functioning." The former they talk about as if they were not people at all, and in frankly eugenic terms about how much better off everyone would be if they didn't exist; they talk about how expensive such people are, and what a terrible burden they are on their families, the state, or both. If they mention quality of life at all, it's only to say something like, "Nobody could want a life like that..."

Attitudes toward the latter group are somewhat more complicated. Especially with the stereotypical "Aspie," whose impairments are minimal and only affect social interactions and are offset by exceptional intelligence and aptitude for math, science, or computers. They are also thought to be (at least, in their pop-culture incarnation) hyper-rational, like Vulcans, their thought processes uncluttered by emotion and petty interpersonal concerns. (This is an ambivalent form of idealization --- I usually write about it as a negative stereotype, since it also implies that we have no feelings and are amoral, and also that we are something not quite human. I have come to mistrust, intensely, any stereotype that carries that implication, even if it is ostensibly a flattering one, because "you're not human" too easily segues into "you don't have the same rights and protections a human would have." And yet I think there is an element of idealization in it, too.)

So there are competing ideas about these stereotypical autistic geniuses; on the one hand, people tend to mythologize them (or, sometimes, the people who come closest to fitting this stereotype tend to mythologize themselves) as the Prometheuses behind every great technological innovation in human history (c.f. Temple Grandin, "It was probably an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.")

On the other hand, there is definitely a sizeable contingent that would like that category of autistic person to vanish from the Earth as well. I mentioned in an earlier post the growing stereotype of the Aspie psycho-killer (qu'est que c'est), a person whose complete lack of empathy enables them calmly to plan and carry out mass shootings. 

Anyway, my point was that intelligence mitigates the ableist impulse to dehumanize autistic people. Even in autistic people themselves --- how often do you hear, "I'm not disabled; I'm smart!" or some variant thereof? --- you see this come out as a self-defense tactic. I know I used it that way. For me, the problem was that my worldview was too individualistic to see that my individual merits didn't matter; that all people, no matter how smart or stupid, how virtuous or venal, deserve equal rights. I was trying to say, "I'm a person; I deserve to be treated like a person," but because of my internalized ableism it came out as, "But I'm not disabled! You should be treating me like a real person, not a disabled person!"

I think it's entirely possible that this set of biases --- disability is bad, intelligence is good, some autistic people possess intelligence --- might play a small role in explaining why a person who sees a developmentally disabled person jumps to the conclusion that the person is autistic. 

I've also noticed a strain of wishful thinking that says autism isn't really a lifelong condition --- it can be treated, or cured, by (in descending order of battiness) growing up, intensive behavioral training, changing one's diet, taking vitamins and supplements by the fistful, chelation, etc. That might enter into it, too. 

*Obviously I don't think any of this is happening at a conscious level, or with any ill intent. I think that if this is a real thing, and not just something I made up, it's operating at the level of an implicit bias, that you don't even know you have but that can subtly alter what you see to fit what you expect to see.

**Amanda Baggs has written some powerful, if horrifying, things about her own and her mother's experiences with doctors who believe this

***I know this is a very controversial statement, given that I am writing this in an American context, and anti-intellectualism is also a thing in American culture! I may write a post about that, too --- how those two contradictory attitudes coexist.

****I'm not sure that that's ALL "low-functioning" and "high-functioning" mean, but the presence or absence of intellectual disability, indicated by one's IQ score, is used often enough in the literature that I feel confident using it myself. And when I use these phrases, I use them to represent what allistic people think autistic people are like, not what I think accurately describes autistic people. Because I think that, while autistic people do vary in how impaired they are and how much support they need, I don't think degrees of impairment map neatly onto a binary of IQ less than 70 or IQ greater than 70. I also think that the same person can be "high functioning" --- need minimal support --- or "low functioning" --- need intensive supports --- in different contexts. Even Temple Grandin, the high-functioning autistic's high-functioning autistic, was what most people would call "low functioning" as a child.

Sunday, June 30, 2013

The Delusion Illusion

There's a very interesting discussion in the comment thread on this post at Respectful Insolence; it's about something that's definitely been on my mind a lot as a skeptic, which is the problem of Why People Believe Weird Things.

... [T]he people who claim that the vaccine is useless, and that polio eradication is the result of sanitation, must be mentally challenged at some level. There are not many of them I don't think --- their numbers obviously are a lot less than the incidence of schizophrenics, for example, and I have to wonder about the ability of those folks to organize rational thinking.
What this commenter is doing is trying to grapple with how a person could believe something that is obviously false. (In this instance, it's not just obviously false but also dangerous, in that the belief that vaccines don't work leads people to decide not to vaccinate themselves or their children, which undermines herd immunity and puts other people at risk of disease).

The conclusion he comes to --- that it must be mental illness that makes them cling to their counterfactual beliefs, despite any and all contradictory evidence you might throw at them --- is one I've seen a lot of people use to try and explain other people's mind-bogglingly irrational beliefs or bizarre or evil actions. I see it most often in this latter context, where someone commits a horrible crime, like mass murder, and in the news coverage the label "disturbed" or "troubled" or "mentally ill" or "unstable" gets attached to the perpetrator. (Even if he had never been to a psychiatrist in his life.)

It's easy to understand why a non-mentally-ill person would think that --- you see someone do something that you would never do, that you cannot even fathom doing, and you want to know what could possibly drive someone to do it. If imagining yourself in their shoes doesn't give you an answer, you're left with the possibility that this person must differ from you in some fundamental way.

You don't usually have enough information about the person to guess at how they differ from you, why they make a choice that you would not make under the same circumstances. (Just so you know, the choice I'm thinking of is the choice to become an anti-vaccine activist, not the choice to commit mass murder. Insert joke about the indistinguishability of those two things here.)

Anyway, for people with no experience of mental illness themselves, "mental illness" seems to function as a kind of conceptual black box that can be invoked to explain anything anyone does that otherwise defies explanation.

It also works to preclude introspection, to cordon off the person being labeled as mentally ill as not needing any more explanation. If someone is violent, their violence is a symptom of "mental illness," not a universal human tendency aggravated by social conditions. You don't have to ask any questions about, say, which human lives society values over others, or about whether there might not be conflicting cultural messages about violence (i.e., violence is bad but you're not a man unless you are capable of violence), or anything like that. No one need be examined or judged except the person who acted out.

Similarly, if someone is being illogical, or ignoring evidence, or deceiving hirself about something, you need not ask whether you might not be deceiving yourself about something else. The person making the illogical argument is not demonstrating the limitations and biases of human thought, to which all people are susceptible --- no, they're just crazy.

It's an easy explanation, but it's wrong and it makes life a lot harder for people who do have mental illnesses.

Here's another comment that explains how that works:
People who argue against vaccination are dangerous extremists. They are irresponsible and willfully ignorant. Their lies and manipulation are not a political issue for me, they're an intensely personal slight on who I am, and a threat to my very life.

It's clear that you can't grasp why your ableist language is problematic in this context, so I'll break it down for you.

1. Virtually the entire foundation of the anti-vax movement is the lie that vaccination causes autism and other developmental disabilities.

2. These people refer to non-neurotypical and developmentally and physically disabled people as "vaccine damaged", "broken", "stolen", "lost", and "soulless", among others.

3. Their argument is that death by vaccine preventable disease is better than life with a disability.

4. When presented with the fact that many disabled and chronically ill people are at greater risk of dying of VPDs they often claim that it's simply Darwinism in action, that the virus is cleaning up the gene pool.

5. It is not uncommon for these people to abuse, and even kill, their own disabled or non-NT children. When they do so they are often lionised by their peers, told what good parents they are, and let off by the just system because having to live with their (now dead charge) meant they'd "suffered enough."

Ergo, when you breeze in and spew back the same rhetoric as them, equating their deliberate cruelty and ignorance with developmental disability, then you're as bad as they are. You're saying "These people are bad, they're doing the wrong thing, they must be mentally disabled."

I can bring a fairly recent comparison to mind, that of the media reaction to pretty much every instance of an American gunman mowing a group of innocent people down. Do they say "He must be angry" or "He's a truly awful man"? No. They claim he must be autistic, or schizophrenic. Just like you they conflate wrongdoing with disability or mental illness, because Cthulhu knows there isn't already enough stigma around either topic, or enough fear or disgust at those of us on the receiving end.

Clear now? If the anti-vax monkeys shit in their hands and fling it, you're not going to make them stop by curling one out into your own palm, and lobbing it into their cage.
This same commenter also makes another important point, that being delusional is not at all like being a crank with a megaphone (or a seat in the U.S. House of Representatives):
The kind of fixed, delusional beliefs that go along with schizophrenic mental illness are typically just as distressing to the person with the diagnosis, if not more so. Watching someone in the grip of a florid delusion is very different to watching the majority of the anti-vax crowd's stubborn refusal to heed facts. I've seen people with various MIs, eating disorders in particular, who know that all food isn't poison, but can't make that inner dialogue relinquish the claims it makes. With my OCD I am excruciatingly aware that doing Y won't stop Z from happening, but knowing that truth, and feeling that it's safe to act on it feel like they're a million miles apart. 

So obviously, anyone who is genuinely suffering compulsions or delusions requires help and support, and an understanding that it's not deliberate. The anti-vax crowd requires a cluebat to the brain, perhaps in the form of a trip to somewhere that VPDs roam unchecked.
I've never been delusional, exactly, but I have had severe depression, and what this person says about knowing that what you're thinking is wrong but still being powerless to stop the thoughts rings very, very true.

I can't imagine a person stuck in that kind of epistemological nightmare state would be very likely to get up on a soapbox to try and convince other people to adopt the same delusions.

No, that sounds more like the behavior of someone who has never had cause to question their own grip on reality.

Anyway, I'm going to bastardize Occam's Razor and say that you don't need invoke a relatively uncommon phenomenon* to explain something that could just as easily be accounted for by something more commonplace.

Normal, baseline human thought is prone to a whole bunch of biases, errors, shortcuts and unconscious distortions that make each person a sort of Unreliable Narrator** of their own life.

Here are a few that I could see making someone think vaccines cause autism:

1. People prefer stories to lists of things that happened. (Thus, if one thing happens after another thing, you might see a connection between the two, even if there is none. Also, one person telling a very personal, emotional story is going to move you more, and stick in your mind longer, than someone throwing a bunch of statistics at you.)

2. People tend to idealize the past. If you didn't notice that your child was different right away, but only once they started to miss developmental milestones, you might start remembering them as more ideally "normal" than they really were as infants.

3. People like to think they are more or less in control of what happens in their lives. So thinking that their child is autistic because they chose to vaccinate hir might, weirdly, be less scary than thinking their child just is autistic and there was no way they could've prevented it***.

4. People's experiences color their view of the world. Along with #1 and #2, this one could make a person who had seen their "normal" baby suddenly develop autism in toddlerhood blame vaccines, and also greatly overestimate how drastically the prevalence of autism has risen. (At the same time, this explains why so many people feel like they can just opt out of vaccination; unless they're a lot older than most new parents are, they don't know what a lot of the vaccine-preventable diseases were like.)

5. People also tend to believe what the people around them believe. If your friends tend to mistrust doctors and medicine, and prefer "alternative" medicine, you might find it easier to believe that modern medicine's great accomplishments, including mass vaccination, aren't really that great and doctors just took credit for something that was already happening (e.g., the first comment I quoted, where the commenter mentioned having heard people say that improvements in sanitation, not Jonas Salk's vaccine, were responsible for eradicating polio in the U.S.), or even that modern medicine is making us sicker than we were in the idyllic past. (See also #2).

Finally, I don't have data on this (will look for some, but that's another post), but I strongly suspect that believing something made your child autistic correlates with seeing autism as The Worst Thing Ever.

*Mental illness is actually not super-uncommon, but it is still definitely a minority experience

**Everyone else is even less reliable at describing your life, though. So you still win.

***This probably won't matter to people who've managed to accept their child's autism; they tend to care less about why their child is autistic and more about how to help them live a full, independent life.

Tuesday, June 25, 2013

Senator Envy

I am often envious of people living in other states, or even other parts of my state, for their awesome state senators and representatives.

As I live in the Kansas City Metro Area, I read a lot about Missouri Sen. Jolie Justus, who represents a district including parts of Kansas City, MO. She's an out lesbian, and the first openly gay member of the Missouri Senate. She also generally seems to look out for her poorest constituents; whenever I see her quoted in the Kansas City Star she seems to be talking about how such-and-such measure would affect the poor, the disabled, the homeless etc. She seems to want to make Missouri a kinder, gentler, more inclusive place.

I have also had reason to wish that I lived in a different part of Kansas, so that Kansas Sen. Marci Francisco would be my senator instead of Sen. Greg Smith. I wrote to both of them (and the rest of the members of the Natural Resources subcommittee of the Kansas Senate Ways and Means Committee) concerning an effort to reintroduce black-footed ferrets on private property in western Kansas, and a resolution their committee was considering that would oppose this effort. Sen. Francisco wrote back to me, and gave the impression that she was well-informed on the issue, and that she shared my concern that the resolution being discussed was written in a hugely misleading way. She also told me about several efforts she had made to change the language of the resolution by amending it, and that she would keep trying to edit out the parts that she thought were wrong. (Sort of hedging one's bets, is how I took it: the ideal outcome would've been for the resolution to fail, but if it looked like it might pass, it would be less hostile to the reintroduction effort than it would've been without her intervention. I can appreciate that.)

Now I have another state senator to covet and admire from afar: Texas Sen. Wendy Davis. She's filibustering a particularly draconian set of restrictions on abortion that would close the vast majority of Texas's abortion clinics. Should the bill become law, only five clinics (out of 47) could stay open, and those five are all clustered in the eastern part of Texas.

Map showing all clinics in Texas that offer abortion (top), and all of those clinics that meet the requirements laid out in SB5. Graphic made by Whole Woman's Health
Anyway, Sen. Davis is taking heroic measures to block this bill! She's been standing on the Senate floor and speaking since 11:18 this morning, and she's going to keep speaking until midnight tonight. She has had to stay in that spot for the whole ten hours she's been speaking, and will have to stay there for the two hours and forty-five minutes she still has to go. She can't stop talking, leave (even to use the bathroom), eat or drink. Republican senators have even called foul on her for wearing a back brace at one point in her filibuster. At least she's wearing good shoes!

I am in awe of how hardcore she is. I'm a lot younger than she is, and in good physical shape, but I don't think I could do what she's doing, even on a pure physical level. (Seriously. I can work outside for six, seven or eight hours in the hot sun, like when I dug an 80-foot-long, maybe 18" deep on average trench in my mom's backyard to put in a brick wall border for a giant flowerbed we're still filling up. Did that all by myself, during peak sun hours in a Kansas summer. It was probably high 80s or low 90s*. Yet I am probably 85%-90% certain I would collapse before the end of the twelve-hour, forty-two-minute filibuster she's powering through.) Obviously I wouldn't have the quick wits to come up with original, relevant content to fill a twelve-hour filibuster; apparently in real life you can't just grab the nearest book and start reading aloud.

*For any international readers I might have, those numbers are on the Fahrenheit scale. In degrees Celsius, it was probably 30-35. Hot by my standards, anyway. Some of you might scoff at that, but I am a transplant from further north, and I miss winter. 

Wednesday, May 8, 2013

Ha Ha

I just found not one, but two identical paragraph-length comments urging the reader to "BOYCOTT AMERICAN WOMEN!"

I will not publish them, or quote them, but I just wanted to share that piece of information.

(I might express hope that the commenter gets what he wishes for --- a foreign-born wife, particularly one from, oh, maybe Russia or China --- just so he can have his expectations of a demure and submissive little woman utterly confounded. But I would not want any woman to actually wind up married to this loser, so I will instead wish that he spend his life alone with his sense of entitlement.)

Sunday, May 5, 2013

More About Stigma

Miri at Brute Reason has a very thought-provoking post up about social stigma, and whether anyone deserves to be stigmatized.

She doesn't think so, and she gives lots of very good reasons, including these:
When a group is stigmatized, they are considered less than human in some ways. Whichever aspect of them is stigmatized becomes the whole of their identity in our eyes,  and often this means that even if they change the actions that caused them to fall into that category in the first place, the stigma remains. ...
[W]ielding psychological manipulation as punishment really, really rubs me the wrong way. The attitude that if someone does something bad they deserve to be cast out and hated and seen as inhuman scares me. I think it's very normal and understandable to want to punish someone for doing a horrible thing, but, as I wrote after the Steubenville verdict, I'm not sure that's the most useful and skeptical response. I feel that our primary concern should be preventing people from doing bad things (both first-time and repeat offenses) and not satisfying our own need for revenge by punishing them.
But, as good as these arguments are (and I am still turning them over in my head, and will probably keep this idea, that stigma and ostracism are inhumane and that there is nothing anyone can do that is bad enough to make them deserving of such treatment, for a very long time*), I'm not sure I can follow them all the way.

Between the ongoing story I've been following in my local newspaper about a girl in my city --- identified only by the initials LP --- who was found locked in a closet in her mother's apartment and my discovery of the Homeschoolers Anonymous blog, and also Libby Anne at Love, Joy, Feminism blogging somewhat regularly about the disturbingly popular child-rearing philosophy of Michael and Debi Pearl, my mind has been more preoccupied than usual with the vilest, most extreme forms of child abuse.

I commented on Miri's blog that, if anyone does deserve to have a stigma permanently attached to them, it's the perpetrators of those horrors, particularly the Pearls (who were not content merely to abuse their own children, if indeed they followed their own method, but who wrote books proclaiming their combination of hard-core obedience training, enforced by frequent beatings, and withholding food from "defiant" children is the only thing that will guarantee a child will grow up to be a Godly person who is saved from Hell) and the mother in this ten-part personal narrative on Homeschoolers Anonymous.

Doing that to a child, for as long as the anonymous author's mother did --- from the spread in ages of the various children in the family, and the author's Conclusion where she mentions that her two youngest brothers are still with her parents and the abuse is ongoing, it had to have been more than a decade --- is a world away from, say, committing an armed robbery. This wasn't a single act, this was a long-term campaign this woman waged against her children. She stayed at home, ostensibly "homeschooling" her children throughout this period, so it's hard to see a line between these acts and the rest of her life. 

Yet, with the LP story, which is just as horrific, and which makes me feel just as much rage on the victim's behalf, I can see more of Miri's point. LP's mother was very young when she had LP, and at several points in the story you can see hints of someone who was overwhelmed, and who might never have done what she did to her daughter if she had gotten the help she needed but probably never asked for. It's hard to see whom it would help to stigmatize her, when she was already probably stigmatized for other reasons (poverty, blackness, living in a subsidized apartment, being an unmarried mother of three children by two different fathers), which might well have contributed to her feeling that the only thing she could do with her eldest daughter was to keep her out of sight.

But the Pearls, and the parents in the anonymous woman's story? They're not stigmatized at all, except by people like me, who have no power in their lives or social contact with them, or people who have left the conservative evangelical Christian circles those people move in. Within that community, they are revered as leaders and role models. I'm sure that this knowledge is part of the reason I want so badly to rain down opprobrium upon them: because, unlike Jacole Prince, they're getting off scot-free, and they continue to believe that what they are doing is right.

And Miri does grapple with the problem of great evil in her post, too --- where I chose to focus on child abuse, she wrote about rape. And she made another great point in doing so:
Being a convicted rapist is actually a very stigmatized identity -- it's just that rapists rarely become convicted rapists. Rape is known to be a Very Bad Thing, but rapists know that they can get away with it if they commit it in certain ways. Despite the stigma, rape is pervasive and rape culture exists.
I absolutely see a dynamic like this playing out in mainstream society's attitudes about child abuse; child abuse is so heinous, so evil, so stigmatized that we can't ever believe anyone we know is abusing their child. So we second-guess ourselves when we start to wonder about a child's suspicious bruises, unexplained absences, dirty clothes, poor hygiene etc. The stigma attached to child abuse is terrible, so we are reluctant to call it down on our neighbors' heads, even if we suspect they are abusing their children. What if we're wrong? We'll have ruined an innocent person's life! 

(This will sound painfully familiar to anyone who has been raped, or who has spent any time reading about rape culture.)

Another thing worth pondering about this problem as it pertains to child abuse is that, when the child who is being abused, neglected, or even murdered has a disability, the abusive, neglectful or murderous parent is not stigmatized so much as they are pitied. The poor dear, she was carrying an impossible burden. 

A mother can appear in a film in which she tells the camera she has thought about putting her autistic daughter in the car and driving off a bridge with her, and the main reaction to this film will be sympathy, not shock or horror. 

I point this out not to argue that parents of disabled children don't deserve sympathy, or much better support than they're currently getting from society at large, but to argue that this reaction leaves no room for the child. They're a person too, and they have the right to food, shelter, medical care, education, love, and as much freedom and autonomy as is developmentally appropriate**. Focusing on how hard it is to care for a disabled child, even if you're only trying to explain the parent's actions, works to excuse the parent and put some of the blame for their fate onto the child. It also works to make life harder for all disabled people, because it makes it sound like we're being unreasonable just by existing, and that attitude is exactly the kind of attitude that resists making accommodations for us, even when those accommodations are not particularly expensive, awkward or difficult.

Particularly when we're talking about children whose disabilities are behavioral, this idea that it's just too hard works to excuse awful things like restraint and seclusion, at home and in school. At its extreme, it can lead to parents keeping their disabled children in dog cages; they see no other way to treat them because it's too hard and it's not like the children are normal children, for whom such treatment would be abusive, no, they're abnormal children for whom it is necessary.

So even while I see that a heavy stigma attached to child abuse can be counterproductive, in that it might discourage people from reporting their suspicions, I also think there are some kinds of abuse that are not heavily stigmatized, that are even excused (i.e., abuse of children with disabilities, which is often framed as a tragic consequence of disability) or met with approval (i.e., abuse within insular communities that don't share the wider culture's norms).

And it makes me furious that there isn't a heavy stigma, that people like, say, Michael and Debi Pearl don't even think they've done anything wrong, and sleep the untroubled sleep of the just.

*"Keeping an idea" is what I do when I read or hear something that blows my mind, but that I do not immediately know whether to accept it as truth. I kept a lot of ideas related to feminism in the (long) time before I decided I was a feminist, and I kept an idea of Richard Dawkins's that I now think I do believe is true, that raising a child to believe in Hell (at least, a Hell that they could go to --- I'm not sure it's true if Hell is only for big evildoers like Hitler and Stalin) is an abusive practice. I'm also keeping the idea that veganism is a moral imperative for those who are able to adopt it. A lot of the ideas that I keep are of the form "actually, this thing that we do all the time is bad, and you should stop doing it/get other people to stop doing it.")

**This notion --- that freedom and autonomy can't be absolute when you're talking about children --- is actually more complicated than it sounds, especially when we're talking about children with disabilities, or dependent adults with disabilities. How can you define what is "developmentally appropriate" for a child whose development has been atypical? Especially if said child is ahead of his age in some ways while also being delayed in others? (This was me, and I suspect it is most autistic people!) I know only this much: the way these decisions are currently made gives too little freedom to developmentally disabled adults.