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:
- 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.
- 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.
- 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.
WeirdLaw 
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Thank you. I wrote a much more long-winded post that said much the same thing. I’m going to link to yours in mine. Thanks again.
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Thank you, this is what I’ve been trying to say in response to everything I’ve seen the last few days. I dislike ASAN and question their ethics for independent reasons (not the usual ones), but I’m not sure there is any autism ‘society’ that doesn’t fall into that category.
Thanks – for the record, I’m not sure what your ethical issues are, but I’ve got both professional and personal connections to ASAN and can vouch for the fact that the leadership takes ethics very seriously. Of the autism-related orgs out there, I’d say that it’s got the best combination of good goals and actual effectiveness.
Also, re: autism, not sure if you’ve come across this already, but it may be of interest if not: http://autismcrisis.blogspot.ru/2010/10/are-autistic-people-natural-born.html
I do care and I do blame mental illness. When a twenty year old male exhibits bizarre, extreme, random behavior which is out of the ordinary for that individual, then it is reasonable to guess that the men has psychosis. Many people seem to believe that schizophrenia develops in childhood, but the fact is that for men it develops between the ages of 18 and 26. For an average person, the risk of developing schizophrenia is 1 in 100. For an average person, the chance of developing schizophrenia is 1 in 100. Statistically speaking, mental illness is the most likely culprit here.
I’m not sure how it matters that schizophrenia develops in adolescence or adulthood, but yes, you’re correct about that.
It’s damaging, however, to perpetuate the assumption that if a young man engages in serious violence, he must have schizophrenia. There’s no evidence that this particular individual had schizophrenia, and most mass shooters (with the exception of Jared Loughner) did not. Moreover, people with schizophrenia are unlikely to be violent unless they also have substance abuse problems or believe that they’re acting in self-defense against someone who is trying to persecute them (and these two factors also tend to increase the risk of violence among people who don’t have schizophrenia).
If you care about people with schizophrenia, the last thing that you should do is perpetuate the myth that people with schizophrenia are inherently dangerous. It makes it harder to get treatment for schizophrenia, and it makes it harder for people with schizophrenia to recover and rebuild their lives because people avoid them out of misdirected fear. It also makes people with mental illness a target for violence: people with mental illness are more likely to be victims of violence than perpetrators.
It is important to note that schizophrenia develops in late adolescence or early adulthood because it puts the circumstances in a better perspective. Unlike autism which is a lifelong condition, the unusual behaviors associated with schizophrenia emerge during near adulthood. Parents tend to have much less control over their adult children’s behavior than their younger children’s behavior. Sometimes treaters will not even talk to parent’s about their adult children’s treatment. As the internet is filled with people who want to blame the parents for mental illness, acknowledging that schizophrenia has nothing to do with parenting and that the behaviors are not something parents have dealt with for a lengthy amount of time lessens the stigma. Learning that anyone with or without a family history can develop schizophrenia makes it an “us” issue rather than a “them” issue.
If your concept of “stigma” starts and ends with stigma against parents of people with mental illness, this conversation isn’t going to go anywhere.
I’m far more concerned about stigma against people with mental illness themselves. And propagating the attitude that people with mental illness are violent is a pretty serious contributor to stigma against people with mental illness. If people think you’re dangerous and violent, it doesn’t really matter whether they think your dangerousness is the fault of your parents; they avoid you and discriminate against you either way.
“People with mental illnesses who are being treated are not more dangerous than the general population,” said Dr. E. Fuller Torrey, founder of the Treatment Advocacy Center and an authority on the topic. “But evidence has become overwhelming that untreated severe mental illnesses are a significant contributor to violent acts, including homicides and a large percentage of rampage murders.”
According to the above quote, untreated mental illness is responsible for a disproportionate number to rampage killings, such as the one in Connecticut. It is a difficult balancing act to acknowledge the role of mental illness in these extreme cases without implying that mental illness is generally associated with violence, which it is not. But if we want to reduce random rampage murders, we have to iprovide swift access to psychiatric treatment.
The Treatment Advocacy Center is not a trustworthy source of information on this issue, considering that their entire purpose is to promote forced hospitalization and medication of people with mental illness. They are not interested in decreasing stigma against people with mental illness and in fact purposefully cultivate the myth that people with mental illness are dangerous.
I’m not against people getting treatment for schizophrenia, but only to the extent that it helps *them* have good lives. Stigma, including the perception that people with schizophrenia are inherently dangerous to others, is incredibly harmful to people with schizophrenia. As I noted in the post right after this one, demonizing your child is not an acceptable method of helping your child get medical care.
I think it is a gross misrepresentation of Fuller Torrey and TAC to say that their “purpose is to force treatment”. I infer that you believe forced treatment is a greater injustice than a lack in availability of treatment. I strongly disagree. Untreated mental illness is a profoundly devastating thing on par with the generalized perception of forced treatment.
FWIW, the severity of violence is not what I link with schizophrenia, it is the bizarre, randomness of the behavior that leads me to believe that psychosis played a role. I agree with you that violence, per se, is not linked to mental illness. Even within the serious mental illness population, violence is not common. http://mentalillnesspolicy.org/consequences/predictors-violence.html
I totally agree that stigma is a deterrent to treatment and I think “No kidding, me too” is a great resource. But I also believe that a lot of people want to deny the existence of serious mental illness and lump it in with “we’re all a little crazy”. That said, I believe that serious mental illness, ie untreated serious mental illness, plays a role in events such as the one in Connecticut. Therefore, I think it is important to use the grief-stricken energy in a constructive manner. Pretending that serious mental illness is similar to Asperger’s or moderate depression and therefore “forced treatment” is bad, creates barriers, rather than removes them.
I wish I could go back in time to the days when I did not need to know that serious mental illness exists. I wish I could still believe in Hollywood’s version of mental illness. [One Flew Over the Cuckoo’s Nest, Girl, Interrupted, Miracle on 34th Street, etc]. Unfortunately, I am one of the millions of people who’s lives have been touched by serious mental illness and I no longer have the privilege of believing that it is some kind of ethereal affliction.