Recommended Reading for February 11th

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Marian E. Lupo: Bringing Back the Baby Lion: Reflections on the Conference on Disability, Culture, and Human Rights, Disability Studies Quarterly, Vol 29, No 4 (2009)

The question I began my presentation with is a question still with us: “We have global poverty, we have global disability, but we also have global resources. Who has those global resources?” I would suggest, as one source, the multinational corporations, which now occupy the historical space of unjust wealth carved out by the East India Company.

I say unjust because the wealth owned by these entities is premised and accumulated based on the human body as commodity, as object. Those already disabled are a disvalued commodity. The process of extracting economic “value” from other bodies all too often produces “disability,” and a devaluation of the now exhausted commodity. Thus, once the value of these bodies is used up, they are discarded. In the U.S., more value may be extracted from the exhausted commodity through the cold-blooded ingenuity of the profiteering insurance industry.

My suggestion is that disability is a given of the human condition, not an economic exception. Thus, the equitable distribution of resources is not a privilege to be earned, but the most basic component of human rights. Basic respect for the disabled means respect for the inherent fragility and mutability of the human body.

Wicked Local Cambridge: Letter: Don’t deny access for handicapped

Imagine a woman in a wheelchair, trapped in her home, with no way to get in or out. No, this is not a scene from a horror movie; it’s the daily reality of Lesa Dane.

Trapped in her home for more than three weeks, Lesa, a paraplegic, was recently denied a building permit for a chairlift to be put in her second-floor condo by the city’s building commissioner — more concerned with whether the chair might obstruct a stairwell than the safety of a disabled woman who suffered a crippling autoimmune disease that left her in a wheelchair. […] The commissioner stated her application would not be approved unless she had a 6-foot-wide staircase.

SFGate: Legal-test firm fights blind student in court

The company that administers the California bar exam has asked a federal appeals court to stop a blind law student from using computer-assisted reading devices in the test, which starts in two weeks. […] Enyart works as a law clerk for Disability Rights Advocates in Berkeley and would suffer no hardship by waiting a few months for an appeals court to review the case, the company said. […]

Enyart, 32, has been legally blind since 15 from macular degeneration and retinal dystrophy. As a UCLA law student, she took tests on a laptop with software that magnified the text and read the questions into earbuds. […]

The examiners offered a pencil-and-paper test with questions displayed on a large screen, a human reader and twice the usual three-day testing period. Enyart said she would become nauseous from having to look at the screen and needed the computer setup to have a fair chance of passing.

MSNBC: Different colors describe happiness, depression: Study could help doctors gauge moods of patients with verbal challenges [I wonder how culture-bound this is? ~L]

The study found that people with depression or anxiety were more likely to associate their mood with the color gray, while happier people preferred yellow. The results, which are detailed today in the journal BMC Medical Research Methodology, could help doctors gauge the moods of children and other patients who have trouble communicating verbally.

NPR: Children Labeled ‘Bipolar’ May Get A New Diagnosis

In a move that could potentially change mental health practice all over America, the American Psychiatric Association has announced that it intends to include a new diagnosis in its upcoming fifth edition of the Diagnostic and Statistical Manual — and hopes that new label will be used by clinicians instead of the bipolar label. The condition will be called temper dysregulation disorder, and it will be seen as a brain or biological dysfunction, but not as a necessarily lifelong condition like bipolar.

Telegraph.co.uk: Patients in ‘vegetative’ state can think and communicate

Experts using brain scans have discovered for the first time that [a minority of] victims, who show no outward signs of awareness, can not only comprehend what people are saying to them but also answer simple questions. […]

The patient was then asked six simple biographical questions including what was the name of his father and whether he had any sisters. In each case, his thoughts were picked up by the scans within five minutes. In each case he was 100 per cent accurate. […]

Jacob Appel, an expert in medical ethics at the Mount Sinai Hospital in New York, said that doctors should help end the lives of people trapped in their bodies, if they think that is what they want.

[Note that there is nothing in this article suggesting that the technique might be used to drive assistive/communicative technology to improve the quality of life of the few people who could use it. There is only the rush to use the tech to find out whether people want to die.]

Related: SciAm: Conditional Consciousness: Predicting Recovery from the Vegetative State

By 11 February, 2010.    recommended reading   



16 Comments

  1. A short quote from “Children Labeled ‘Bipolar’ May Get A New Diagnosis”:
    “Research psychiatrists worried that the children were being given a label that wasn’t right for them, and saddled with the sentence of a serious mental illness for the rest of their lives.”

    Emphasis is mine. (Well, assuming it works right. I’m not sure what works here. My apologies if I’ve gotten it wrong. I was trying to emphasize the second half of the sentence.)

    So if I am reading this correctly, a big part of their stated purpose in creating this new diagnosis is to help the kids avoid the prejudice they will inevitably encounter once they have been diagnosed with bipolar disorder. Instead of, say, working to reduce that prejudice.

    I’m probably reacting to this more strongly than I should because I am an adult diagnosed with bipolar disorder. (And I strongly suspect that that was a wrong diagnosis, given to me by a sympathetic psychiatrist who wanted to keep me out of the bottomless hole of borderline personality disorder.)

  2. Euphemism treadmills are unfortunate. I’m not bipolar and as far as I know I don’t have any good friends who are, so maybe I don’t know how bipolar people feel about the word bipolar. But I feel like I’ve read/heard people using it in a fairly neutral way and seeming perfectly okay with it. Are there people with the diagnosis who don’t like the word and prefer to use a different word?

    Meanwhile, all the Asperger’s people are freaking out about the (in my opinion awesome) ASD thing, and saying “I don’t want to be identified with people who use diapers.” People are sort of hateful. I’m really glad about intellectually disability replacing mental retardation, too.

    I feel like if someone in a “vegetative” state could communicate, then they’re a lot more likely to want to live. I feel like not being able to communicate is a lot of the reason someone might not want to live.

  3. @AWV – As someone with bipolar disorder, I can see what wtfmi is getting at. It’s not the words used to identify people so much as the fact that this looks motivated by the same ugly reaction of the Asperger’s folks to the ASD determination. Some people don’t like lumping in the less disabled people on a mood/autistic spectrum with the more disabled people; ie, some people with Asperger’s resent being classed with people with autism, and undoubtedly some parents of mood-disordered children are horrified by the thought of their children being lumped in with bipolar people.

    Frankly, since psychiatric diagnoses are such a crapshoot, it doesn’t really matter what someone’s called as long as the indicated treatment actually does something useful. But it does illuminate how hampering and prejudice-inducing having a label like bipolar can be. If there’s some indication that temper dysregulation is biologically different and medically necessitating a distinct treatment regimen from bipolar disorder, that’s one thing. But it seems more like a move borne out of fear of the label of a stigmatized mental illness than anything else. Which is sad, because it shouldn’t matter which diagnosis you have.

    (And, hi mods! This is my first comment and if it’s reeking of violations, feel free to hit me with a clue-by-four.)

  4. Not all the Asperger’s people are freaking out about the ASD thing. Some are. The comments about not wanting to be identified with people who use diapers are indeed hateful. Some people very much support this move to make Asperger Syndrome more explicitly part of the autism spectrum. It is a conversation which has been taking place within the community for a while now.

  5. no, I know, I’m just being dramatic, I have Asperger’s (ish). Obviously there have been lots of people with an AS diagnosis who not only don’t mind but have identified as autistic or ASD for a long time. It’s just frustrating to see and hear interviews with AS people who seem incredibly invested in the idea that they’re not like Those Really Disabled People Over There.

  6. @KaninchenZero: Yeah. Saying “all the Asperger’s people are freaking out” is a hasty generalization; this Aspie, for one, welcomes the change.

    Functioning labels, IMO, are rather meaningless. I know of autistics who can safely drive a car but barely communicate via speech; on the other hand, I can speak clearly but haven’t the processing speed or spatial perception to drive safely. I know autistics who can comprehend language better than me, but can’t speak as well. And so on. Who here should be considered highest functioning?

  7. I disagree with the Asperger’s thing only because I kind of hate functioning label b.s. in general, so the opposite of what you’re mentioning, AWW. I mean, who’s to say what “mild” is? Yeah, I’m aware Asperger’s is just as arbitrary, so I’m scarcely up in arms about it, but it still kind of rubs me the wrong way just a little bit. *shrug* Really, AWW, making blanket statements about “all the Asperger’s people” isn’t really a good thing to do on a blog like this.

  8. Exactly, wtfmi. I think there are some sensible justifications for the change, but I hate the message that it’s not okay to saddle children with stigma (but apparently it’s perfectly okay to do it to adults). Of course I don’t really expect the people who create the DSM to be particularly concerned with reducing stigma broadly, but still.

    I am concerned that some children are being diagnosed at bipolar at VERY young ages–think 2-5 years old–and then being given VERY powerful antipsychotics which certainly have not been tested for safety on children that age. I’ve seen reports of at least one case involving a toddler who died because she was given too much of one of these drugs. Irresponsible use of antipsychotics in children (and many adults) is a problem, but I’m not sure that the new criteria will do much to address that, unfortunately.

    I have to look more closely at the new criteria, having mostly concentrated on the autism criteria so far. As someone who has been given the rather nebulous diagnosis of “Bipolar NOS” a couple of times and who kind-of-sort-of might have fit the new criteria for “Temper Dysregulation Disorder” as a kid, I don’t know how I feel about this, exactly. I think a lot of this is creating imperfect categories to describe variances in human experiences which are seen as unacceptable. And I recognize the practical need for diagnostic criteria, but I still wish that the diagnostic process could be more personalized and less codified, at least in certain areas. All of it is a somewhat flawed attempt to classify people who experience emotions in an unusually intense way.

    From what I can tell people in the “Asperger’s” category now are largely positive about the changes, though of course some are not. I still think that the criteria are too vague and open to misinterpretation by professionals who don’t understand the spectrum. I’m saying this as someone who had a psychiatrist try to un-diagnose me on the basis of having a (neuro-atypical) boyfriend. But I suppose these kinds of misconceptions will persist no matter what the DSM says. So there have to be other ways of combating the problem.

    I have a close friend (recently identified as an Asperger’s autistic) who is unsure about the diagnostic criteria. From her perspective, it’s taken a long time just to be recognized as being differently-brained, and she’s now concerned that the new label will take that away, or fail to adequately represent her differences. I think that the subsumed criteria, if done right, can avoid these pitfalls. But as someone who can often do a very, very good job of passing I understand these concerns, even though I don’t agree with them.

    Ignorance and a lack of willingness to understand–whether from professionals or laypersons–is a problem which no diagnostic manual can ultimately address.

  9. “If there’s some indication that temper dysregulation is biologically different and medically necessitating a distinct treatment regimen from bipolar disorder, that’s one thing.”
    My understanding, hearing the NPR broadcast and reading the article, is that this is the case. The diagnosis of children’s bipolar has been criticized as being completely different from adult bipolar. It did help kids get treatment, though, so the condition is being integrated into the DSM with a new name.

  10. I’ve been really struggling to find language to describe where AS falls on the autism spectrum. The best I’ve gotten so far is “the area of the autism spectrum that is associated with less obvious challenge in passing for neurotypical” — and I’m not terribly satisfied with that.

    As codeman38 says, the autism spectrum is not really a 2D continuum. Trying to describe a location on the spectrum with 2D labels like ‘high’ and ‘low’ or even, less judgmentally, ‘left’ and ‘right’ is rather oversimplified.

  11. Mother of a Stutterer

    This news just came out today:
    Researchers Discover First Genes for Stuttering (http://www.nsastutter.org/stutteringInformation/Stuttering_Gene_Discovered_CNN_Report.html)

    A quote from the article: “This is a very exciting discovery”, said National Stuttering Association (NSA) Chairman Ernie Canadeo. “It validates our view that stuttering has a genetic component, and that it is not behavioral. Emotional factors do not cause stuttering.”

  12. I think the new ASD diagnosis will be a little less 2-D, because (if I understand it correctly) a person’s diagnosis will say what their social/communication is like, and what their rituals/stimming/obsessiveness is like. So someone could be diagnosed as ASD with mild social/communication impairments, and severe rituals/stimming/obsessiveness (or vice versa, or any other combination). I still think this is overly simplistic because it leaves out sensory issues and because speech and nonverbal communication aren’t the same thing. I think there should be five domains: sensory issues, nonverbal communication, executive function, rituals/stimming/obsessiveness, and speech. But even two domains is better than just labeling people “mild, moderate, severe” as if everyone is “mild” or “severe” at all the same things.

  13. @Mother of a Stutterer — gosh, I just heard this exciting news too! They’ve already identified 3 genes, which are connected to metabolic disorders.

    Tim from the Stuttering Brain did a good cover of it — http://thestutteringbrain.blogspot.com/2010/02/breaking-news-genes-of-stuttering-found.html

  14. Gah. I was a child with bipolar disorder and I would have found fighting stigma a lot more helpful than a fancy new label. If it helps kids get better treatment, great, but that quote really got to me.

  15. It’s difficult to diagnose children and adolescents with mood disorders because they are going through so many developmental changes that can be difficult for them to handle. I didn’t read the article as simply trying to find a more PC label for bipolar in children but rather that these children likely did not have bipolar disorder in the way that adults do and that not all of these children continue to present as bipolar in adulthood (which they should as bipolar is a lifelong condition).

    I think that if I could have been diagnosed with bipolar around age 17 instead of age 20 it could have saved me a lot of problems in those years and I could have found a working treatment before I got to my upper years of university (which would have saved my GPA). But I didn’t have these symptoms as a child.

    I will agree though that with mental health many people are reluctant to want to be grouped with extreme cases. Mental illness is poorly understood in the general public and many people are uncomfortable or fearful with it. It took me over a year after being prescribed mood stabilizers to stop holding onto hope that I was “just depressed”, because that was more socially acceptable. And even then I would have to qualify my bipolar disorder by saying “but it’s only Type II” or “it’s very mild” or anything else that would separate me from THEM, the crazy bipolar. Stigma is very powerful.

  16. It’s a tough thing … because when we disclose our mental health status to other people, why do we do it? As an explanation? To set expectations? The problem isn’t disclosing it but how it’s received. So a person discloses that they have bipolar disorder – what does that mean to the person who gets that information? They might not know ANYTHING about it. In which case, it’s useless information to them. And then the person who has disclosed this information is likely to be a token bipolar disorder representative. (Not good). More than likely, what the recipient does know is very negative, in which case it’s harmful for the person who has disclosed this information.

    So yes, we need to work on stigma. And education is very important. Why don’t they talk about mental health conditions in middle and high school health classes?