I am Liza L.’s kid

The author, age 11.

This is a hard post to write.

It’s easy to say, in the abstract, that calls for “more mental health services” in the wake of a mass murder are stigmatizing. It’s much harder to talk about how that stigma actually feels, what it looks like, what its consequences are.

Yesterday a lot of people I know started reposting an article called “Thinking the Unthinkable,” or its various re-posts under the title “I Am Adam Lanza’s Mother.” The author of that article discusses, in detail, her 13-year-old son whom she describes as having uncontrollable outbursts. She says she feels that she is out of options for getting his behavior under control and, as a result, she is similarly situated to the mothers of the boys who shot dozens of people in Columbine, Virginia Tech, Aurora, and Sandy Hook. And, although she changed her son’s first name in the article, she published it under her full name and included a recent photograph of her son.

I hated the article. Not because I don’t sympathize with the mother but because I also, and more primarily, sympathize with her child. Even though I never, even at my worst, would have intentionally harmed another person, my mother could have written many of the same things about my behavior when I was around that age. Although actual violence is very rare among people with psychiatric disabilities, the sorts of behaviors that are described in this article – impulsive threats, verbal aggression (e.g., cursing at parents), fights with peers, and a tendency to try to escape, hit, or kick when approached or restrained during a meltdown – are not uncommon among kids with disabilities that affect impulse control, communication, and emotional regulation. As a friend of mine discussed in more detail in her blog post, “I Was One of the Scary Kids,” these kids are still unlikely to deliberately hurt others or engage in premeditated aggression, and their behavior often substantially improves by the time they reach adulthood as they gain the ability to escape from stressful situations.

As I read the article, I couldn’t help but imagine how I would feel if my mother had written something similar about me, documenting her impressions of my worst moments and comparing me to someone who had only recently killed 30 people, when I was only 13 years old. To know that that article was being shared among everyone I knew, including teachers, schoolmates, and extended family. To know that that article, attached to my mother’s full name and my photograph, would likely still be on the Internet years later, when I was applying to college or for jobs. At that age, I had a hard enough time forgiving or understanding my mother when she forced me to get off of the phone and do my homework (I had only two friends and they were the most important things in my life), and that’s the sort of thing that 13-year-olds have some  hope of understanding. How can any 13-year-old, let alone one with mental health issues, “understand” why his mother felt the need to tell the entire world that he is a potential mass murderer and that she’s run out of ideas of what to do about him?

Children with known psychiatric disabilities, especially those who also are seen as having persistent behavioral problems, already get typecast as potential killers despite the fact that there is no useful profile of school shooters and, as of 2009, most school shootings were by people with no history of mental health evaluation and no history of disruptive conduct at school. This typecasting leads to bullying at school, social isolation, and harassment by school administrators. This sort of treatment is not okay, even or even especially when the child actually has serious behavioral problems. How much worse must it be for the child discussed in this article, now that those perceptions have been reinforced, in a highly dramatic and public manner, by one’s own mother?

I would like to think I turned out really pretty well in the long run. I know what I have to do in stressful situations in order to keep myself calm and safe. I get angry a lot, but I’ve found ways to channel it into productive behavior (as I tell my friends, I’ve considered writing a motivational self-help book on how to succeed in stressful and competitive environments, which I plan to call “Do It For Spite”). I graduated high school, college, and law school. I’m now at a point in my life and my career where I have enough of a “track record” showing me to be a competent and non-homicidal person that I can admit to having a disability and having had emotional and impulse control issues in high school.

I’m not sure if I would have been able to do any of those things if my mother had, under her real name and using my photograph, written about my very worst moments in a very public way, and speculated without reasonable basis that I might someday kill people, when I was only 13 years old and still struggling. 

Kids with disabilities and their parents absolutely need support, both in the form of services and the sympathetic ear of others who’ve been there. But parents are not entitled to do things that harm their children in order to get that support. Unlike their children, parents of kids with disabilities are adults, and with that comes privileges and responsibilities their children do not yet have. Parents are far more powerful, both at home and in the public forum, than their minor children (what are the odds that a thirteen-year-old’s complaints about his mother’s unpredictable temper would have gone viral, even though it’s far more terrifying to live with a parent with emotional control issues than with a child?). Thirteen-year-olds aren’t supposed to be good at thinking about their future, but their parents are. Parents are responsible for their children’s lives, not the other way around.

As adults, parents need to consider the effect their public statements have on the long-term best interests of their children and others like their children. A 13-year-old child has the right to evolve and grow, and that right loses its meaning if there’s a dramatic narrative of the worst moments of their life at that age, published multiple places on the Internet, without meaningful protection of their anonymity. Parents also need to consider whether it’s worth saying things that perpetuate their child’s segregation and isolation from the community, in exchange for “better services.” Services help, but I’m not sure that any services help enough to outweigh the harm caused by encouraging people to see your child as a future murderer.

If you really care about mental health…

I’ve been thinking a lot about disability in the wake of the recent school shooting in Connecticut. I am sad that so many people’s reaction is to blame mental illness or autism. It especially bothers me when people call for “more services for mental health.” The implicit assumption that mental health problems make people violent, and that mental health services are mainly  there to help protect non-disabled people from those of us with mental illness, actually hurts people with mental illness. These calls for services sound so benevolent that it’s hard to call people out on it. But one of the main barriers to accessing services is stigma. Another barrier to services is the fact that many programs were created in the wake of violent tragedies like this one, which means that they’re (1) coercive, and (2) only available to people who are seen as likely to become violent.

After I posted these thoughts on Facebook, someone asked me which organizations I’d recommend to people who are interested in donating to a mental health/autism advocacy organization that focuses on actually helping people with disabilities AND helps oppose stigma and discrimination. Here’s a short list of organizations I’ve actually worked with and would wholeheartedly endorse:

1. Autistic Self Advocacy Network. Run by and for Autistic people, this organization has proven amazingly effective at advocating for policies that improve services AND decrease segregation and discrimination against adults and children on the autism spectrum, including people with a wide range of support needs.
2. Bazelon Center for Mental Health Law. This organization focuses on the rights people with psychiatric disabilities and has been doing great work advocating for children with serious behavioral needs. They help fight discrimination and advocate for supports and services to help people remain in the community.
3. Trauma and Learning Policy Initiative. This project of Massachusetts Advocates for Children focuses on helping children who have experienced trauma (such as the children who were affected by the school shooting). They focus on improving teachers’ understanding of the emotional effects of trauma and helping schools become “trauma-sensitive environments.” This helps traumatized children stay in mainstream school environments where they have a better chance of academic success and long-term recovery. Although they’re a project of Massachusetts Advocates for Children, they do nationwide public education and advocacy to help children across the country succeed in school. This is a really small project and it gets limited publicity, but it does a lot of good.

 I intend to post something more personal about this issue today or tomorrow. But it’s hard to write, and I figured in the meantime it would be good to offer people some options for advocacy/donations if they were interested.

Autism Speaks held an Autism Law Summit in DC the other day.

And they didn’t invite ME, the world’s greatest autistic attorney???? I am SHOCKED.

Autistic Hoya, though, has a good post on important aspects of “Autism Law” that didn’t get covered.

Although I do believe that mental health/DD parity in health insurance coverage is extremely important, focusing exclusively on coverage of a particular type of therapy – and particularly one that’s denounced by so many autistic individuals who have grown to adulthood – is short-sighted. Even if Applied Behavioral Analysis helps some people, it’s not the only thing that helps (Floortime, for one), and the odds are quite high that any “state of the art” intervention will at some later point be shoved aside in favor of something else. 

Laws take forever to pass and even longer to change or repeal; they need to be designed to stay reasonable even when other circumstances have changed. The types of laws on which Autistic Hoya focuses (and on which I focus) – antidiscrimination laws – are pretty good at this. What counts as a reasonable accommodation under the ADA, or a free and appropriate publication under the Individuals with Disabilities Education Act, is open to reinterpretation and change as technologies and best practices evolve. The original version of the Individuals with Disabilities Education Act – the Education for All Handicapped Children Act – was enacted in 1975, long before the average school even had anything that could fairly be called a computer. Now, schools might be required to allow a child to use an iPad as a form of assistive communication.

I could go on, but I don’t want to spoil the amazing talk that I’m going to give at the next Autism Law Summit. To which I will assuredly be invited. 

BigLaw

I never got around to mentioning it on this blog, but a few months ago I took a dive into the world of “BigLaw” (i.e., large, for-profit law firms). My fellowship at the mental health law nonprofit came to an end, and, seeking more litigation experience, I landed a job at a global law firm in an office that focuses largely on patent law (I purposefully avoided law firms doing disability law, as they’re usually on the side of corporations defending against discrimination claims,  which would in many circumstances make me uncomfortable).

It’s been an awesome experience so far, and a bit of a culture shock. I’m certainly not “out” at this new place, as I’d like to give people the opportunity to come to their own conclusions about me and my skills before I disclose a disability (when disclosing, there’s always the risk that people will interpret every mistake you make or every quirk you have as a “symptom” and come to negative conclusions). Being in the closet requires a certain amount of complex maneuvering, which so far has included: (1) disclosing single aspects of my disability without disclosing the actual full diagnosis; (2) taking decompression breaks in my office with the door closed, which luckily most people interpret as me being really busy; (3) coming up with really creative sensory toys that “pass” as athletic equipment or normal desk toys or jewelry (I even have started a tumblr blog about this, Sensory Squids).

That said, patent litigation is really fun. I’m a bit of an autistic stereotype in that I greatly enjoy math and technology, and many of the other lawyers have advanced degrees in science and are therefore used to dealing with geeks even if they aren’t geeks themselves.

So with that, I give you perhaps the most ridiculous patent ever granted:

Method of swinging on a swing.

I’m pretty sure what happened here is that a patent lawyer was very amused by his child’s innovative technique of swinging on the swingset, and decided to try to patent it. The fact that this patent was awarded is truly amazing. I wonder how they’d ever collect royalties on it.

Bankruptcy court overlooks predatory lending, discharges student loans based on debtor’s autism instead.

On May 17 in Todd v. Access Group, Judge Robert Gordon of the Bankruptcy Court for the District of Maryland issued one of the most offensive (despite being ostensibly benevolent) decisions I’ve seen in a while, in which he forgave a woman’s massive student loan debt in light of her Asperger’s Syndrome.

I can’t quarrel with the overall outcome. This woman had amassed over $300,000 in student loan debt that she couldn’t possibly repay. She had started amassing the debt pursuant to her Rehabilitation Plan at 39, having never held a long-term job in her entire life. While education is often helpful, it’s unclear why Rehab Sevices would encourage a woman who’d never held a job in her life to go to law school, a profession that has a remarkably poor employment rate and high debt load, then drop out of law school and get a masters degree from some random place and then a PhD from an unaccredited online university, is just beyond me. All of these seemed practically calculated to saddle this woman with high student loan debt in return for utterly worthless degrees and no prospect for post-graduation employment. And, indeed, the debtor had not gotten a single job despite getting a Masters and a “PhD.” This is student loan abuse and ANYONE in a similar situation should have their student debt forgiven.

In addition, it appears that Ms. Todd lost many of the supports that had made her few past employment experiences possible. Despite having a significant disability that made it difficult to live independently, she received no housing support, no vocational supports beyond funneling her into overpriced educational programs, and no independent living supports. She was basically set up to fail.

That said, the opinion itself focused less on the inequitable actions of the lenders and rehab people, and more on how her “eerie disconnectedness from a comprehensive life experience” as a result of her “incurable ailment,” i.e. autism. Here are some choice quotes:

Notwithstanding the good intentions of all involved, Ms. Todd‟s and the DOE‟s collaborative mission to integrate her into the work force turned out to be a lost cause (outside of its purely academic benefits) due to her Autism and its utter negation of her ability to ever hold down a real job that paid significant wages.

The Court concludes that to expect Ms. Todd to ever break the grip of Autism and meaningfully channel her energies toward tasks that are not in some way either dictated, or circumscribed, by the demands of her disorder would be to dream the impossible dream.

And, rejecting to the defendants’ argument that Todd’s academic success meant that she could work:

[I]t is certain that however demanding her classroom experience was, Ms. Todd had the benefit of significant accommodations and the [Department of Education’s ADA and Rehabilitation Act] enforcement power behind her as she made her way through school.

So basically, receiving ADA accommodations mean that your degree doesn’t count as much of an achievement.

As bad as these quotes are, the quotes from the plaintiff’s expert are even worse:

A person with intellectual disability may be able to bus tables at McDonald’s but after 10 minutes the person may walk out the door and do something else unless the supervisor standing there telling them you can’t go outside to look at the birds, you need to bus the tables and this is how you do it.

So a person with Asperger’s syndrome cannot focus on a task and execute an eight hour day of something productive in order to be paid for doing it or producing something that is of less importance to an employer.

Yes, he did just say that Asperger’s is an “intellectual disability” that renders one liable to just wander off of the job site for no reason (keep in mind that this woman had no history of wandering off in the one job she’d had previously, and in fact had testified that she almost never leaves her house).

That this sort of catastrophic description of disability is extremely common among lawyers representing people with disabilities, especially those who are seeking some sort of benefit tied to the person’s ability to prove they can’t work. Lawyers aren’t really programmed to think much about how perpetuating stereotypes like this can hurt others with disabilities, such as those who may lose access to educational opportunities that actually will lead to work or those who are trying to combat employers’ perceptions that people with their disabilities aren’t valuable employees (and this case has already elicited delightful comments on the the ABA Journal’s article on the case, complaining that the ADA shouldn’t force lenders to lend to people with disabilities, and schools shouldn’t be admitting them).

That said, I’d like to think that a different litigation strategy could have gotten Todd the student loan relief she needed without forcing her to testify in court, and present expert testimony, that she was inherently unemployable and all of her academic achievements were meaningless. This sort of strategy can actually harm clients’ ability to deal with having a disability in the long term. Unfortunately, lawyers also aren’t really programmed to think about the effects that a litigation strategy will have on their clients’ lives beyond whether or not it will help the client win a particular case.

When perfection is deadly

Disclaimer: This post includes discussion of murder, suicide, and “quality of life” discussions. I’ve categorized it as one of my “legal” posts, even though it doesn’t contain any specific reference to the law, because I’m discussing attitudes that tend to have a lot of influence on public policy discussions.

In the last couple months there have been two high-profile deaths within the disability community that have caused controversy over the value of the lives of people with disabilities: the suicide of Christine Symanski, a young woman with quadriplegia, and the murder of George Hodgins, an autistic young man who was killed by his mother (who then committed suicide).

Although these deaths outwardly seem very different, both of them share two very important features: the media coverage of these deaths tended to take for granted that Symanski might find life not to be worth living and that George’s mother would both find herself stressed to the point of suicidality and wish to end George’s life as well. I also think there’s evidence that both deaths might have been caused, not from lack of adequate services, but from the persistent fixation on seeking more and more services and treatments in an attempt to either cure or fully mitigate the disability, without which life is characterized as not worth living.

Christina Symanski was paralyzed due to a spinal cord injury in her early 20s. After her injury she spent some time in a nursing home before successfully obtaining personal care supports in the community. Even then, however, she apparently felt that her life was more or less over, was resigned to never having a job or a romantic attachment, and decided that she would stick around for a predetermined amount of time to wait for a cure for her injury. When that time period passed, she chose to end her life by refusing food.

By far the best coverage I’ve seen of her death are Bill Peace’s posts on Bad Cripple, who wrote a poignant piece in the immediate aftermath of her death as well as some wonderful criticism of the media’s disproportionate focus on the very small number of people with physical disabilities who want to die. But Bill also crucially pointed out that Symanski’s suicide, and the reasoning behind it, is inextricably tied to our culture’s singular focus on cure as the “solution” to disability:

Disability is a fate worse than death. It is a singular experience, a tragic experience. The “job” for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical.

The motivation behind George Hodgins’ murder is somewhat less easy to analyze because, unlike Symanski, George’s mother did not keep a detailed blog discussing her feelings on the matter. However, the circumstances are in some ways very similar: as in the case of Symanski, much of the media/blog coverage not only effectively erased George from the story of his own murder but also focused extensively on how “understandable” George’s mother’s act was in light of the inherent “stress” of caring for an adult with a disability and the lack of “services” available to help parents (as in this example from Huffington Post).

But in fact George’s mother had access to services well in excess of what most mothers in her situation – almost none of whom kill their children – have. She lived in an expensive neighborhood in Sunnyvale, CA, was still married to George’s father, and had recently withdrawn her son from a day program that was willing to take him because she felt it was insufficiently “community oriented.” Isolation from the community is certainly a real harm, but it’s clearly not so horrible that death would be preferable.

However, this it’s not uncommon for a parent’s fixation on “the best” for a kid (with or without a disability) causes him or her to lose all semblance of perspective (and in this case, the word “perspective” is a massive understatement). This phenomenon is particularly common among upper-middle-class parents of kids with disabilities. To paraphrase Bill Peace, the “job” for all such parents of kids with disabilities is not just to provide for basic needs but to seek the best services. Nothing short of this is adequate. No amount of money or effort is too much. No matter what the focus is always on “maximizing functioning.” You are at war with your child’s disability and without an arsenal of supports and services to mitigate or cure it, you are letting the disability win and your child’s life will not be worth living. Of course, even most parents who fall for this sort of thinking don’t kill their kids, but I don’t think it’s a stretch to suggest that this sort of perfect-or-nothing thinking might have been part of George’s mother’s decision to end her life and that of her son.

In both George’s and Christina’s cases, the media not only bought into the myth that life with a disability (or caring for someone with a disability) is intolerable, but in fact repeated the same problem thinking that lead to these people’s deaths. In Christina’s case, it was their focus on disability itself as the “problem,” from which it would logically follow that the only acceptable “solution” is a cure and that social and personal care supports are of only marginal importance. In George’s case, it was their focus on the idea that the services available to his mom were actually so inadequate that the mother had no option but to destroy her mental health and that she was the only person willing or able to ensure that he had a minimally acceptable life (and thus murder-suicide was preferable to simply withdrawing or taking a break or even committing suicide without murdering him as well).

At the risk of sounding harsh, I think it’s important to shift the conversation from “services” and “cures” into expectation management. I don’t mean that people should expect less of people with disabilities, but that people should expect less of life. If they’ve been looking for a cure for decades and they still don’t have it, you should probably start just getting used to having a disability, with all the discrimination and necessary lifestyle adjustments that may entail. If your search for the best, most state-of-the-art programs for your child is severely interfering with your ability to be a loving, stable, non-abusive and most of all non-homicidal parent, just give up and settle for something. You can tell yourself it’s just temporary until something better comes up. Your kids will forgive you and probably won’t even hold it against you in the first place. If your friends hold it against you, get new friends.

What’s remarkable is that this sentiment is so hard to express these days without actually provoking the same kind of reactions that create the sentiment in the first place, like “telling parents to settle for bad day programs is minimizing the harm they can cause,” or “don’t tell people they’ll never be cured, why shouldn’t they have some hope?” Death is not just worse than trivial harm; I find it downright frightening that anyone thinks “x is not worse than death” is equivalent to saying “x is trivial.” And encouraging people to focus on the remote “hope” of a cure, instead of helping them shift their focus to the highly possible and highly likely prospect of finding value in their lives as they are, isn’t fostering hope, it’s fostering despair.

Wrongful birth lawsuits are not about women’s rights

There’s always been a bit of a tension between the pro-choice and disability rights communities regarding the decision to abort fetuses with disabilities, and it’s coming to a head now that the Arizona senate has passed a bill banning “wrongful birth” lawsuits. Many left-leaning sources have characterized this legislation as protecting doctors who intentionally and paternalistically withhold disability-related information from expectant mothers because they think that it will prevent an abortion (see, e.g., HuffPo; Interestingly, Mother Jones has been the voice of reason here, noting that the bill doesn’t prevent lawsuits based on intentional withholding of information). Huffington Post and addictinginfo have also suggested that this bill will make it harder for women to sue for personal injury due to doctors withholding information about ectopic pregnancies.

They need to calm the heck down. There are some very serious threats to women’s health out there, including the ongoing and completely ridiculous debate over whether all employer health plans should be required to cover hormonal contraception (duh; they should). Threats to the ability to bring “wrongful birth” lawsuits are not something feminists should worry about. In fact, there are very good disability-rights-based reasons to support this bill.

First let’s look at the text of the bill. It’s very simple:

12-718.  Civil liability; wrongful birth, life or conception claims; application

A.  A person is not liable for damages in any civil action for wrongful birth based on a claim that, but for an act or omission of the defendant, a child or children would not or should not have been born.

B.  A person is not liable for damages in any civil action for wrongful life based on a claim that, but for an act or omission of the defendant, the person bringing the action would not or should not have been born.

C.  This section applies to any claim regardless of whether the child is born healthy or with a birth defect or other adverse medical condition.

D.  This section does not apply to any civil action for damages for an intentional or grossly negligent act or omission, including an act or omission that violates a criminal law.END_STATUTE

First note that this bill can’t possibly restrict lawsuits over ectopic pregnancies because it only applies to lawsuits in which a child has been born and allegedly should have been aborted or otherwise not brought to term. Ectopic pregnancies are automatically fatal to the embryo if nature is allowed to take its course; as a result, there is no way that a child can be born from an ectopic pregnancy as a result of the doctor’s failure to tell the mother she had one. Women would pretty clearly be able to sue for personal injury based on failure to diagnose an ectopic pregnancy.

Second, it’s important to know some background about “wrongful life” and “wrongful birth” lawsuits. They’re essentially medical malpractice lawsuits – that is, lawsuits based on negligent conduct, not intentional conduct by a doctor aimed at preventing an abortion – in which the negligent conduct by the doctor is failure to detect that a fetus has a disability and inform the mother. The mother must prove that, had she known of the child’s disability, she would have had an abortion, and the fact that she did not have an abortion based on the child’s disability harmed her (or, in “wrongful life” lawsuits, harmed the child). There may be some situations in which the lawsuit is based on negligent genetic counseling that would have prevented the child from having been conceived in the first place, but that’s not the archetypical case.

Even if one is in favor of these causes of action existing, the Arizona bill is far from radical. About half of the states in the U.S. already don’t recognize “wrongful life” or “wrongful birth” as valid causes of action; many never have.

But there are also good reasons to not want them to exist. Disability law scholars have long criticized these types of lawsuit (see, e.g., this article from Harvard’s Civil Rights-Civil Liberties Law Review). “Wrongful life” suits are particularly indefensible from a disability rights standpoint, as it’s the child who is claiming to have been harmed by not having been aborted and the success of the claim therefore rests on whether or not the jury believes that it’s better to never have been born than to have been born with the child’s disability. Even in “wrongful birth” cases, which theoretically don’t require the jury to believe that the child’s life is absolutely worthless, the success of the claim requires the parent to repeatedly and convincingly state, through a judicial process that might take years, that her (most likely living) child should never have been born; not exactly a recipe for the start of a healthy mother-child relationship.

I will acknowledge that it’s at least ambiguous whether the Arizona bill would prevent lawsuits that I think should be allowed. For example, some pregnancies may be sufficiently dangerous to the mother that the mother herself may suffer physical harm or death if she isn’t informed about the danger and therefore fails to terminate the pregnancy. In a sense, a lawsuit over this type of negligence may be characterized as “a claim that, but for an act or omission of the defendant, a child or children would not or should not have been born.” But it’s also possible to construe the statute narrowly and say that this sort of lawsuit isn’t based on the claim that the child shouldn’t have been born but rather the claim that the mother should not have continued the pregnancy. These phrases are equivalent for certain practical purposes but have different implications: a claim that the mother shouldn’t have continued the pregnancy implies that the problem was with the mother’s health, not some undesirable feature of the child. It also helps to keep in mind that a lawsuit based on the doctor’s failure to warn the mother that her pregnancy has become dangerous would not usually be referred to as a “wrongful birth” lawsuit.

I’m also not entirely sure I would oppose a “wrongful conception” claim. As someone with Jewish ancestry, for example, I’ve chosen to get screened for the Tay-Sachs gene to ensure that I do not end up having children with another Tay-Sachs carrier. Tay-Sachs is an excruciatingly painful and fatal disease, and I’m not sure I want to relieve doctors of the duty to take reasonable care in conducting genetic screenings to prevent Tay-Sachs. I’m sure some would argue that it’s hard to draw the line between screening for Tay-Sachs and screening for other disabilities, including the ones I have. But I am pretty sure that there is a line and that it’s possible to say with some certainty that Tay-Sachs screening is on the right side of it.

In any case, the Arizona bill is at the very least not a grand overreaching by pro-life conservatives. The relevant issues are tough ones that go far beyond women’s reproductive autonomy. Although I can imagine someone opposing this bill and still caring about disability rights, framing it as a clear-cut issue is essentially saying that disability rights don’t matter (something that’s unfortunately not all that uncommon).

ETA: if you want an example of how godawfully these suits play out in real life, check out this recent case in which parents won 2.9 million against a doctor for the wrongful birth of a child with Down’s Syndrome. By their own account these parents love their child and only sued in order to get money to provide for her; I don’t blame them. But there’s something creepy about a legal system that offers parents of children with disabilities tons of money to care for them, but only if they say sufficiently convincingly that they did not want those children at all and would have aborted them had they known they’d be disabled (and of course to say that sort of thing convincingly you often have to convince yourself). Parents who can’t establish that their child would never had been born but for a doctor’s negligent failure to detect the child’s disability are stuck either footing that entire $2.9 million bill for services (if they have it) or trying to milk it out of the public safety net (which is terrible).

Ableist Attorneys

I work at a national disability rights legal nonprofit, so I get a lot of calls from people with psychosocial, developmental, and/or intellectual disabilities who need legal help. Unfortunately, because we only have one office and there are restrictions on practicing law out of state, nearly all of the work that we do in other states has to be in partnership with local lawyers. As a result, we generally can’t get involved in someone’s case unless they’re already represented (and usually can’t get involved even then, just due to resources issues).

When I can’t help a caller directly, I usually try to refer him or her to local advocacy organizations. Each state has at least one Protection and Advocacy organization that represents people with disabilities in some kinds of cases (like institutionalization, abuse and neglect, and housing discrimination), and some sort of legal services organization intended to help people with non-disability-specific issues such as criminal matters, family law, or bankruptcy. Many states also have other nonprofits dedicated to representing people with disabilities as well.

These organizations play an important role and help lots of people, but I still all too often see situations in which people who really need legal help get turned down by the local nonprofits because they’re “difficult.” A potential client is “difficult” if she (and I really mean “she” – 90% of the people I’ve seen get labeled this way are women) is hard to keep on task, if she is “emotional” and gets upset easily, if it’s hard to explain to her what’s going on and what she needs to do, or if she has “too many problems.” Or if it’s someone who wants to complain about a previous psychiatric hospitalization – one that actually was manifestly unwarranted because they weren’t a danger to self or others – and who doesn’t believe she has a disability and doesn’t want to take meds.

It’s bad enough when general legal aid organizations refuse to take these clients, but it’s even worse when the culprits are places that are supposedly devoted to representing people with physical or mental disabilities. If you don’t want to work with people who are hard to communicate with, have “bad judgment,” or are otherwise high-maintenance, don’t go work for an organization devoted to representing people with intellectual, developmental, or psychosocial disabilities. Honestly, don’t even go into legal aid services at all. When your organization functions as a legal safety net, you don’t get to cherry-pick your clients.

This isn’t to say that every single person with an intellectual, developmental, or psychosocial disability is hard to communicate or work with. But those whose disabilities do affect their ability to communicate professionally and concisely and with perfectly even emotional tenor, and who do have impulse control issues who do frequently disagree with their doctors are often exactly the people who most need free and respectful legal assistance. They are often people who have nobody on their side and very limited ability to effectively represent themselves. If they’re lucky, they have supportive family members who will interface with attorneys and navigate the system for them – many of the same attorneys who’d turn down a “difficult” client would be perfectly happy to deal with the client’s less-“difficult” family member – but most of the people I talk to aren’t that lucky.

I am generally reluctant to publicly criticize members of my profession, but this is just not okay. Yes, it does take some extra effort to deal with people who need to be frequently redirected or need to have things explained to them multiple times or keep talking about how everyone’s out to get them. But there are plenty of resources available to help legal services lawyers learn how to deal with clients who have communication and comprehension issues as a result of a disability; there’s even a manual on it published by the American Bar Association that is pretty good.

Our legal system will only work if everyone has a real opportunity to enforce their legal rights. And that means everyone.

Loud Hands

I’ve been pretty busy with work lately, hence the absence of posts. This post is something I wrote to help promote the Loud Hands Project; I hope that now that this one is done, I can start focusing on the other things I want to write here.

The length of time that I can “pass” as normal varies by situation. If I’m having a one-on-one conversation or engaging in some sort of physical activity like walking or dancing, I might be able to come across as relatively normal until I get tired. In any situation that involves sitting still, though, I don’t pass for long.

It’s my hands (and, to some extent, the rest of my body) that betray me: deprived of the ability to mask my movements as gestures or purposeful activity, I start ticcing, twitching, squirming, tapping, flapping, hair-twisting, and picking/scratching/biting at my own skin. If I’m in a chair during this time, it’s highly likely that I’ll end up putting my knees and feet up on it. I am in nearly constant motion.

Not everyone will recognize this as the sign of a disability; some will label me as simply nervous, hyper, immature, bored, or weird. There have even been a few times when I was accused of being on drugs. Whatever it is, it’s not normal. It’s not the way adults are supposed to behave, particularly in lectures, movie theaters, offices, restaurants, religious services, or day-long board meetings.

I was never told to have “quiet hands” as a kid. I was told to stop squirming, stop fidgeting, stop doodling, stop scratching itches (which due to tactile issues are relatively constant), sit on my hands, and get my hair out of my mouth.

Other kids were told this sort of thing too, but unlike me, they could actually do it. I on the other hand never quite stopped being the kid who spent all of class with her feet on her chair, chewing on her own hair (or, later, twisting her hair or scratching her head) while doodling and looking out the window and still managing to know what was going on. My blogging handle – Twitchy Woman – was something a friend used to call me, affectionately, in high school (meant to be sung to the tune of “Witchy Woman”).

It turns out that, in fact, I knew what was going on in class because I was doodling and looking out the window with my feet on the chair and chewing my hair. When forced to stop, my mind seemed to lose its anchor and float off into some other dimension.

Of course, I was also the kid with the weird, immature-looking walk, swaying a bit from side to side while holding my arms out in weird ways and, frequently, tilting my head to the side. When I ran I frequently looked (and still sort of look) like Orville the albatross trying to take off. I was the kid, and am the adult, who will if left to her own devices eat the same exact breakfast and lunch (and frequently dinner) every single day (If I lose this habit, I usually end up not having a clue what to eat and you don’t even want to know what I end up eating). At the office, I often have the urge to walk all around the office, trying to inconspicuously check in every office to see who’s in and in every office supply cabinet and the office fridge (sometimes twice) to remind myself what’s there. I’m the person who will with some regularity just start wandering off because I think a conversation is over when it isn’t.

These are all things that I absolutely cannot control for very long. The times that I’ve tried to inhibit them over the long term – mostly when I’ve worked in close quarters with others in very conservative office environments – tend to go badly. My productivity suffers and I end up getting sufficiently stressed that I end up picking uncontrollably at my face or head. The effort, and the knowledge that it’s not even making that much of a difference, is depressing and distracting.

So lately, as I’ve been becoming more and more “out” in various aspects of my life, I’ve been trying to not even try to control it. I walk through my apartment and neighborhood flapping, clapping, tapping my fingers, with my head turned to the side. I am a bit more subdued in the office and remain as subdued as possible in certain meetings, but overall am not spending much effort trying to suppress how I move. I attended a disability leadership conference earlier this month – which I’ve been meaning to blog about anyway but haven’t gotten around to – and spent a large part of it flapping and rocking side to side and tapping my fingers and ticcing.

I’ve been happier and more productive than ever. I think that maybe it’s actually impossible for me to feel happy when I’m not moving in certain ways. For such a long time there just weren’t that many times out of the day when I actually felt good, as opposed to anxious or angry or bored or something, because I wasn’t letting myself do the things that I need to do in order to actually feel good. It’s so much easier to transition from one activity to another when I let myself flap my hands. And it’s so much easier to think when I let myself tap my fingers, rock back and forth, or squirm into weird positions. I’m achieving levels of productivity that I normally only have when I force myself to stay at the office late at night when everyone has gone home, since those used to be the only times that I actually let myself move around in the office the way my mind wants my body to move around.

This, to me, is why the Loud Hands Project is important. It’s an opportunity for those of us with neurological disabilities to re-learn how to live in a way that many others take for granted: to go through our day without the constant self-policing, self-examination, and self-denial that it takes to look normal. To use all that freed-up energy for the things we want to do and the things we want to get done.

The Loud Hands Project has already raised $10,000 and will be putting out an awesome anthology on “essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands).” But it’s still accepting money:

Here’s the deal. We’ve set three incremental benchmarks. As we meet each benchmark, we’ll be able to fund additional components of The Loud Hands Project. After all, as you can see from our description above, the anthology has always been just the beginning. The Loud Hands Project is a lot more expansive than a single book, and we have an opportunity to start putting down roots much earlier than we’d hoped. Take a look at what we’re thinking of:Benchmark 1: $15,000 “About us, without us”

“About us, without us” is a video about the Autistic community and our place in the conversation around eugenics and the prevention of autism. If we make the $15,000 benchmark, we’ll be able to pay for Julia to go on the road and collect interviews and footage, and cover production, editing, and initial distribution costs.

Benchmark 2: $20,000 “Welcome to the Autistic community”-With these funds, we can rush website development and have the Loud Hands project website complete, fully accessible, and ready to launch on April 2, 2012—Autism Acceptance Day.

-Use the website to commence the development of materials tailored to all ages and abilities explaining autism and welcoming the autistic person to the community.
-Initially, this will take the form of a letter drive, blog carnival, and pamphlet-design competition, with ongoing further refinement and eventual publication of materials.

Benchmark 3: $25,000: Connecting to Community Together

To begin, we will produce a DVD incorporating video and written content from across the history of the Autistic community, establishing our historical context. Then, to explore the state of the movement today, we will use the funds raised to establish a Conference Scholarship fund for Autistic self-advocates to use to attend Autistic and disability rights related conferences and events connecting to the larger theme of disability culture. Scholarship recipients will participate in a second video documenting Autistic community and culture.

There are still 46 days left, so please go ahead and donate at their indiegogo page!

ETA: And, of course, here’s their neat video in case you haven’t already seen it:

Lest Anyone Question My Diagnosis

I just retrieved from my parents a bunch of paper journals I kept as a teenager. Most of it is regular teenage angst, documented in obsessive detail, but there are also some kind of amusing gems like my account of a high school field trip to an amusement park.

I wrote for about two pages about a conversation I had on the bus on the way to the park (my friends and I made a list of the most annoying songs we knew, and the most romantic songs we knew), the decorations in the pseudo-Ancient-Egyptian food court where we ate lunch, and the arrangement of food on our lunch trays.

Here’s the full text of my food-arrangement rant:

For lunch my group and I ate at the ____ Cafe because it was inside [editor’s note: it was raining that day]. J__ and N__ both had cheesecake. They also both had red trays. A__ and I both had chocolate cake with little chocolate chips on the sides and little whipped-cream puffballs with the same consistency as Sculpey. Pretty stiff. We also both had orange trays. We also all had macaroni + cheese and garlic bread and a coke. When we were in line it was all nicely symmetrical. Red-Orange-Red-Orange. Cheese-Chocolate-Cheese-Chocolate. Then everything else was the same. Except A__ had a large coke and everybody else had a small coke. And other than the symmetry everything else was bad.

There’s an illustration, which I’ll spare you. It’s pretty clear that the symmetrical trays and weird decor in the lunch place were the highlight of the day. The only indication in the entry that I went on rides or anything was an off-hand remark that my friends and I had our picture taken while we were riding a roller-coaster.

Again, this isn’t totally representative of my journal, but it probably says something that this is one of the happiest entries I wrote.