Tag Archives: autism

Ill

101, activism, blaming, identity, intersectionality, language, mental health, , , , ,

The topic of mental illness came up again with the latest large-scale hate crime against women to make national news. It’s a nice easy narrative for George Sodini to be a psycho, to be crazy, to be mentally ill because then we don’t have to understand him. We don’t have to relate, because we’re not like that.

Thing is, we’ll never know if Sodini was mentally ill or not. We can’t tell from what he left behind, and he’s no longer around to ask. The things he wrote aren’t all that unhinged; he just took the workaday hatred of black people and women that is everywhere in our society and picked up a gun and went hunting.

And the mentally ill means violent narrative is false anyway. Mental illness correlates with an increased risk of being a victim of violent crime, not of committing it.

It’s been said before, but it bears repeating because there’s so much silence and stigma and ignorance surrounding mental illness. I’ve had kind of a lot of experience with mental illness and the mental health professions. Some of it may be triggering.

I have taken (in no particular order) Prozac, Zoloft, Paxil, Effexor, Serzone, Xanax, Ativan, Risperdal. I’ve self-medicated with alcohol a lot and smoked cannabis and taken LSD when I could get it. I have been diagnosed, at various times, with clinical depression, bipolar type I disorder, bipolar type II disorder, borderline personality disorder, post-traumatic stress disorder, gender dysphoria disorder, depressive psychosis, and paranoia. I strongly suspect that I have Asperger’s Syndrome, which would explain a lot of my symptoms, behaviors, and difficulties. I have spent time in private and public psychiatric hospitals and spent years in weekly or twice-weekly therapy. I have damaged myself in ways ranging from very small — pulling on my hair repeatedly — to very serious — shooting myself in the left hand between the third and fourth metacarpal bones. I still have PTSD-like symptoms from the last and from growing up in an abusive environment, though episodes of it get farther apart as time passes. I have had suicidal thoughts that became elaborate plans. There were times that the only thing keeping me alive was someone needed to feed the cat. I am not alive for big important reasons; I am alive for small stupid reasons. I am alive because I didn’t want whoever found me to suffer the trauma of it. I have suffered delusions and intrusive thoughts and I have always had minor hallucinations (words printed on a page are red instead of black, patterns on a floor or wall shift while I look at them). I often have trouble understanding people when they talk and try to pass it off as being hard of hearing. I’m not; I hear fine. I have trouble processing auditory information and especially picking conversation out of background noise.

You’d think I was dangerous. I’m not. Really. I’m not even dangerous to me. Damaging myself — like it is for so many people who self-harm — is a way to stay alive, to cope with trauma. I have better ways to cope now and I don’t do that any more, but sometimes when I’ve had a really hard day and I hurt a lot and the noise in my head is very bad I remember how comforting it was to draw a blade across my arm, to feel the skin part, to see the blood well up, and how it made the noise go away for a while. Maybe it makes me crazy, but that is a warm fond memory for me. And it is what I needed to do when I needed to do it. I have the same memories about smoking, and I don’t do that these days either.

I’m much better now than I was. There are long periods where I don’t need psychiatric meds at all. But I am not cured and I never will be. I will always have mental illness in my life, just as I will always have fibromyalgia and physical pain. I’m back on an SNRI now and it’s helping and that’s good, because I could feel the old illness patterns coming back. Things have been bad lately with the economy. But I’ll be okay. I know how to cope with the bad things in ways that aren’t so drastic. There are people I can ask for help. I’m not alone.

Even if I am crazy.

Portrayals in Pop Culture: Adam

identity, intersectionality, media and pop culture, mental health, , ,

In August the wife and I saw Adam, a romance featuring a person with Asperger’s Syndrome and a neurotypical. And it was really rather good, especially measured against other portrayals of autistic persons in popular culture. It is always astonishing how much of myself I see in depictions of people with AS, even when the wife isn’t nudging me and whispering “You so do that.”

It’s true, I do. I’m older than Adam and my (admittedly self-diagnosed but dude it really fits) version of the autism is a bit different than his. But we still share a lot of traits. Tinnitus, check. Visual distortions? Yup. Difficulty with officials and paperwork? Yes. Socially inappropriate questions? Oh deep fried shit on a stick yes. Rage? HULK MOIRA SMASH!

Of course, when I was a wee bairn, Asperger’s Syndrome as a diagnosis hadn’t made it to the U.S. yet and wouldn’t until 1992. Autism, then, meant you didn’t talk and I talked like anything. I didn’t talk like a kid. My family still tells these things as cute baby stories: I taught myself to read by the time I was three and read compulsively. If there was a cereal box on the table I had to read everything on it. I would grab my crossed ankles and rock on my back for hours at a time. The day I found out what penises were I went around the neighborhood asking everyone if they had one. I did not know how to make friends. I sort of wanted to, but I was most comfortable in structured settings like Scouts or, later, role-playing games. It was (and remains) difficult for me to look people in the eye and to touch them and I was constantly being told to do that and to shake hands firmly. I needed to look more like I was paying attention in class. I actually was paying attention as was demonstrated every time a teacher asked me a question and I answered it correctly; I just didn’t look like I was paying attention and that made them angry.

When I am very upset I stop being able to talk. I pick compulsively at my skin. I don’t interview well — I’ve never gotten a job by applying and interviewing for it. Every job I’ve ever had I’ve gotten because I started as a temp and they kept me. I’m not good with figurative speech or most kinds of humor. If I get something in my head I want to say it will come out.

So, Adam. His is the version that has more externally-directed rage. (Mine is turned mainly on myself, hence the scars and the hospitals and becoming a veritable sommellier of psych meds.) It’s done very well. Hugh Dancy spends a lot of time with reddened, tearful eyes, but he has suffered a series of very large life-changing events. He does a pretty good job portraying a person with AS without making Adam a straight-up freak. It’s clear that Beth (Rose Byrne) loves him at least partly because of (and also in spite of–I know I’ve been difficult to live with at times) the way his brain works. Adam-the-character is rather luckier than most of us; he grew up upper-middle-class in Manhattan, inherited a fair amount when his father passed (before the movie even starts, it’s not a spoiler), he gets lots of interview coaching and gets his well-paid dream job.

It’s not exactly the median experience. It can and does happen, but many more of us work a series of low-end, low-paying jobs until our social difficulties get us asked to move on (which has happened to me, though it was also tangled up with transgender issues). My résumé is a very model of stability by AS standards despite the occasional long gaps in it.

Sorry. It’s hard to talk about the movie without talking about AS in general and about me. It’s a sweet movie. It’s nice to see someone like me as something other than a socially crippled freak or the larval stage of a serial killer. It’s just the movie version of an autistic person’s life: charmed and ultimately successful (socially, financially, romantically) despite occasional setbacks.

Of course I consider my life moderately successful and I’m looking at not working at all soon. I have a family. I’m loved. I’m still poor.

There’s one thing I’d change about Adam-the-movie: After Adam-the-character’s father dies, a guy named Harlan (Frankie Faison) fills in as father figure. The role edges into Magical Negro territory. It didn’t have to be this way. Harlan, you see, is a locksmith. He drives a beat-up green van and wears a gimme cap. He is the only working class character with a significant role in the film and the only person of color with a significant role in the film. I suspect that since Adam was given a folded flag at his father’s funeral (again, not a spoiler, it’s the first scene), Harlan knew Adam’s dad in some sort of uniformed service and stayed in touch after despite Harlan being a black locksmith and Adam’s dad being a white professor at Julliard.

I’d have made Harlan one of Adam’s dad’s colleagues from Julliard. A piano instructor or something. Put him on an equal footing with regards to social and economic class with the white people, instead of the working stiff they did. I can’t tell you how many books and movies I’ve seen the same damn thing in. Hey! Creative people of America! There are rich black people! They go to college! They teach at college! Put them in movies and TV shows and books already, you crypto-racist falsely-inclusive jerks

Recommended Reading for October 13, 2009

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In the blogs:

The Ashley Treatment Yet Again:

I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media’s pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled “Ashley Revisited: A Response to Critics” by Douglas Diekema and Norman Fost.

What Kind of Troll am I?:

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired “Not Really Autistic” meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won’t describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

Pride & Prejudice:

Then, when I was 27, I was diagnosed with a mental illness. The doctor said to me (in effect), “You have a deeply flawed mind. It’s screwed up and you’ll have to take this medicine that slows your thinking and makes you forget everything. Learn to write it down.” Talk about a slap in the face. I ripped my clothes and dumped ashes on my head and whined long and loud to God about it. “Why me? Oh Woe Poor Poor Pitiful Me!” Then He said to me (in effect) “Deal with it. It’s what you are.” So I realized that I had no right to be proud of my mind anymore. It was kind of a release, because pride is a heavy burden, even when you’re used to bearing it. All of a sudden, I *wasn’t* better than everyone else, and it became easier to be patient and kind. Which turned into something kind of nice.

Freaks, Hercules and the Hydra [long]

Much has been written about the ambiguous nature of disabled people’s exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film “Freaks” reflects that ambiguity, both from “within-story” and “external” perspectives – most of its cast were “real” circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the “freaks” performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the “Armless Wonder” drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers – who were, as reported here, viciously excluded and discriminated against at the MGM studios – as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there – see below).

Breathtaking to behold: talking back to dismissal:

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

In the news:
Go, read this! It thrills me to no end.

CDC and disabled patients: ‘We’ll work on this together’ [US]

For many women, the inability to stay still prevents them from seeking regular breast cancer screening.

But a health education program is gearing up to encourage woman with physical disabilities to seek medical attention and get regular screenings.

…

“Women with disabilities are getting screened at a less regular rate because there are so many barriers with going to the doctor,” Egensteiner said.

The medical equipment used to perform mammograms also can prove a barrier for women with physical limitations.

Can you collect employee medical info to combat H1N1? [US] [Note: ADA = Americans with Disabilities Act]

Employer groups have been asking the Centers for Disease Control for guidance on whether privacy rules prevent HR from surveying employees about medical info designed to control the spread of swine flu. The CDC has responded, including an approved form for requesting certain types of info.

The CDC has issued a document – “ADA-Compliant Employer Preparedness For the H1N1 Flu Virus.”

Outrageous pre-existing conditions

accessibility, blaming, feminism, intersectionality, justice, medical practice, social attitudes, , , , , , , , , , , , , , , , , , , , ,

(Originally posted a month ago at three rivers fog; in the meantime, news also came out that things like acne were considered pre-existing conditions as well: consider any and all further outrage well and fully included in the subject of this post.)

You’ve undoubtedly heard the news already. A history of domestic violence or C-section are considered, by private US health insurance companies, to be “pre-existing conditions,” which are used as a basis for denying coverage, rescinding coverage, charging higher rates, or other discriminatory practices.

Of course, this is outrageous. Why should a woman who has been beaten by some asshole be denied health care coverage? It isn’t fair.

But there’s something wrong here. And not just with this discriminatory practice — but with the people breathlessly reporting it.

Because, you see, it is being reported, not as:

Pre-Existing Condition Exclusions Are Morally Wrong, but as

How Dare They Treat DV Victims and Mothers the Same Way They Treat Women with Depression, Diabetes and Cancer!

It is being reported as different from “normal” pre-existing condition exclusions. It is being reported as being especially wrong. As being worse. A true moral violation, taking things to a new level.

But why?

Here’s the thing. Insurance companies refuse coverage to people with pre-existing conditions (anything from asthma to leukemia) because they know these people will be highly likely to incur greater costs than healthy patients. The entire rationale for excluding them is because they cost more money.

If you have had a C-section once, you are much more likely to end up having another one if you ever give birth again. If you have a history of domestic violence, you might end up with an abusive partner again, and end up needing care.

Yeah, it’s complete bullshit that these people would be refused health care. It’s downright immoral.

But why is it especially immoral to refuse health care to these women — but not to women with osteoporosis or an anxiety disorder or back pain? Or Ehler-Danlos Syndrome or food allergies or heart disease or lung cancer?

How is it any different?

Victims of domestic violence don’t deserve to suffer consequences for something that is not their fault. This is truth. It contributes to the very popular cultural myth that victims are somehow to blame for the abuse they suffer — that they must have done something to provoke it, or that they should have left, etc. All this stuff is highly damaging.

But that doesn’t make it different than telling a woman with lung cancer that she can’t have care because her disease is somehow her fault. Which contributes to the very popular cultural myth that people with medical conditions are somehow to blame for them — that they must have done something to earn them, that it’s their own fault they ended up that way, and therefore they lose rights to certain things because they are inflicting the costs of their mistakes on the rest of us.

Because if you haven’t done anything wrong, you won’t ever end up sick. If you do end up sick, there must be something you did wrong.

Maybe that woman smoked. And maybe that other woman slapped her boyfriend first. And that woman who was raped wore a short skirt and flirted with the man first. That does not make this violation her fault. This is basic feminist theory. “Blaming the victim.”

Health care is a human right. We all deserve basic health care that respects a person’s dignity and integrity and humanity.

So why are these things different? Especially outrageous?

I can’t identify any reason except one.

Because they apply to healthy women.

It’s understandable why health insurance companies would refuse care to women with arthritis. It makes sense that they would deny care to women with psychiatric disorders.

Because we, as a society, think it is OK to deny quality of life and societal access to people with medical conditions, disabilities and chronic illnesses. We have determined that it makes sense to discriminate against them. We get why these things are done. And they’re done to those people. Over there. Not to me and mine.

But C-sections? Why, one-third of mothers in the US will have a C-section instead of a vaginal birth! That affects me and mine. Therefore, it is especially outrageous — that we would be treated like we treat them.

Oh, but that’s not how you think?

Really?

What justification is there for acting as though these practices are any worse than the practice of denying coverage to women who have lupus?

There isn’t any that isn’t rooted in a deeply ableist bias.

How about we get outraged by the fact that there is any such thing as a pre-existing condition exclusion at all? I can get behind you on that one.