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.