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    EEG & Disability: TED Talk Reaction


    2010 - 06.24

    Posted in Disability, Rant, Society | 1 Comment »

    So, for those that don’t know, the TED conference that focuses on “ideas worth spreading.” Top specialists in various fields are invited to talk on their area of expertise and how they would like to change the world. EEG collects electrical signals from the brain noninvasively (usually with a cap and a scalp  covered in goop).

    Today, I got Dr. Aditi Shankardass‘s presentation, “A second opinion on learning disorders,” in my RSS feed (note: video and transcript are available on the page). And, I have very mixed opinions. Shankardass is an expert and is supporting a more medical definition of learning disorders; many learning disorders are defined by behavior as seen from an external view, not through the individual experience.

    Yet, there were several things in this video that grated on me. First, the nit picky things. By “learning disability,” it actually means “neurological disorder.” Learning disabilities are things like dyslexia. Autism (which this lecture focuses on), ADHD, epilepsy, and other examples are not learning disabilities (although, they impact learning). I don’t know if Shankardass named the  talk, as there was a slide where learning disabilities were noted separately from these other disorders.

    On to the just “ick” factor. For a seven minute video, “suffer” is used 7 times. Two of these were in relation to the neurotypical person suffering. Yes, because neurological disorders are the end all of intelligence. The locked/unlocked mind metaphor is used to describe communication deficits. Okay, just because the outside world isn’t getting the message, doesn’t mean a person is trapped.

    Finally, the straw that gets Alison to write rather than crash on the couch: Shankardass states she found half of children diagnosed with autism actually have brain seizures. Okay, first, there is no explanation of the numbers of children in the study, what part of the autism spectrum they were testing on, and other real basic scientific process. (I tried finding a paper on this work, but haven’t turned up anything.)

    I know damn well what it feels like when someone dismisses your disability or dismisses that you have a disability. By giving people more reasons to dismiss a disability, does not help people with disabilities. Alison’s inner theater1:

    Autistic Person: I have autism. Could you accommodate me by—

    Neurotypical: —I heard that’s really just brain seizures.

    Autistic Person: I don’t have epilipsy; I have autism.

    Neurotypical: Have you had an EEG? Or maybe you should just try some seizure meds.

    I wish I had a more optimistic view. But, I get to deal with people dismissing my disabilities, telling me “cures,” and ignoring my personhood regularly. I don’t expect people with autism to be free of negative experiences in relation to their disability. Which is different from “suffering” from a disability. It’s external forces (including people) that causes a person with disabilities to have difficulties.

    1 I do not have autism and do not speak for anyone with autism. Internal “theater” are compilations of a disordered mind.

    Dabbling with Video Game Diversity


    2010 - 05.07

    Tags: , , , , ,
    Posted in Disability, Diversity, Feminism, Miscellaneous, Society | Comments Off

    So, I am on this little tangent after watching Danial Floyd’s “Video Games and the Female Audience,” which I followed from “Considerations on Females as Game Consumers” at Border House (a feminist video gaming blog). One of the sticking ideas was that the marketing and design of female video game characters are exclusive towards women.

    Why are the breast physics so important? Why are strong, kick-ass women wearing next to no clothing and high heels?1 Why are the female leads always the romantic interest for the male lead? Why are women developers objectified rather than admired for their talents? Why do women leave the gaming industry?2 Why are there “girl editions”? And why are they always pink?3

    But women aren’t the only ones that are not included into the gaming culture. This includes: people of color, people with disabilities, transmen and transwomen, non-heterosexuals—well, it just sort of continues on.

    So, does any game at least do decent to promote diversity? Some. Not as many as I like, but some.

    Beyond Good & Evil (2003) stars Jade. Jade wears cargo pants, a tank top, and a jacket. While her midriff is visible it isn’t sexy; it just sort of is there (going to go with that being the fashion of the times). She is taking on the world… through photojournalism. There isn’t any romance to be found in this title. While not intended, Jade’s design is racially ambiguous.

    Mass Effect Series (2007—present) allows the user to build their own character. That said, all the marketing uses the default male character and the system enforces heteronormative romantic relationships. The women have personalities and objectives that are not necessarily best for everyone in the universe (just as the men do). It isn’t the portrayal of women that I like though.

    No. It’s Jeff “Joker” Moreau, the Flight Lieutenant (read: pilot) for the series. He also has Vrolik syndrome, meaning he has bones that break very easily. When he walks, he limps and is in apparent pain. It’s a character with a disability! But, how do we know he isn’t a token character? Well, I say the biggest indication is that he isn’t a “very special lesson.” Joker is sarcastic, arrogant, and makes jokes. He is clever. He brags about excelling past his normal classmates, “They all got their asses kicked by the sickly kid with the creaky little legs. One guess who was smiling at graduation.”4

    Final Fantasy XIII (2009) stars Lightening. For the main cast, half are women even. And they pass the Bechdel Test5. Hell, the only romantic subplot is between a lead male and a secondary character. The women themselves, well, they are varying degrees of sexualized and none of their clothes are particularly practical. But, they have opinions, beliefs, and secrets. Lightening punches people, as opposed to the more traditional slap; I admit it is more shocking with a woman than a man.

    Even better there is a black man, Sazh. While the chocobo–friendly afro is a stereotype, he breaks many others. He is a single parent who cares deeply for his son. While he cracks jokes and is the apparent comedic relief, he is still very serious and much more mature than the other characters.

    [Border House has great posts about Sazh and the women of Final Fantasy XIII.]

    Any other characters that are strong and diverse? Who are your favorites? What makes you feel they are a good character?

    1 Suspension of belief ends when you can’t stop thinking how little protection a garment offers and how many times you would trip if you ran in those heels.

    2 Especially alarming considering how difficult it is to get into the gaming market.

    3 I like pink, but give me red, green, purple, and all the other colors too!

    4 This particular line resonates a lot with me. Not only do people with disabilities have to be equally talented to their peers, we have to be better. To make up for our disability in society’s eyes. Not a rational thought, but internalized messages rarely are.

    5 The Bechdel Test says:

    1. It has to have at least two women in it,
    2. Who talk to each other,
    3. About something besides a man.

    Prove you’re a programmer


    2010 - 04.08

    Tags: , , , , , ,
    Posted in Computer Science, Disability, Diversity, Feminism, Industry, Personal, Society | 2 Comments »

    That was the major question for an interview I had yesterday. An interview where the only clear direction I had was that I would be doing a 15 minute presentation for. So, I, was expecting an interview focused on my communication skills.

    And a lot of it was.

    And then there was the “prove you’re a programmer” line. Codeless, in a dim-lit room, with no sign of paper or blackboard. How do you answer that? “Here’s my transcript,” “define ‘programmer,’” talk again on projects I’ve done, or what?

    I went with the simplest for me: I grade code; I would hope that’s a good indication that I know how to program.

    I left that interview feeling completely dejected over that one little statement. Nearly in tears, I started the drive to school. And at times like these, I am so glad I have ADHD. Because, while conscious me was trying not to get myself killed from being an emotional breakdown, unconscious me was working out what other paths I could take besides accepting it: the main interviewer had invited me to email him, and he sounded interested in the C class project I had finished, so maybe I was suppose to send him some code? Based on the feedback I got, right answer.

    That said, “prove you’re a programmer” is a very problematic request. I understand that it is a valid concern; there are plenty of coding horror stories. But it could have been phrased so much better.

    “Prove you can do X” is demanded of members of minority groups in varying degrees within “inclusive” environments. Even better, as a member of a minority group means that you get to represent an entire group and that you are only valuable if your contributions are better (not equal to) the majority group.

    Specifically for computing, women’s roles are relegated to technical writing and graphic/interaction design. Women that make contributions that are outside that realm are held as exceptions. Exceptions that are then neglected when discussed outside the bubble of “women in computing.” Seriously, technology isn’t gendered, so why the hell are things made by women viewed as nonexistent?

    Now, to put on my disabled person’s hat. I’m used to dealing with ambiguous statements. Asking “how are you” I’ve learned isn’t a genuine question: the response is a neutral-good sentiment that’s one or two words. But, the question itself is peculiar when I process it: “how are you doing/feeling” or “what causes your existence.” To a normal person, the second version is almost never intended.

    But, being disabled puts me at greater risk than assuming an able-bodied role. And, able-bodied people will overwrite the signs that I don’t hide. That constant twitching, jumpy motion? Obviously, I’m nervous, not hyperactive. (Can’t for the life of me work out what the perception is when I’m clearly not nervous and still twitchy.)

    Statements that are purposefully ambiguous? Well, now I’m fucked. Usually, reinterpret normal talk into their non-ambiguous world view. Now I have to match a question with one answer to one that intends diverse answers.

    Shit.

    It will take a while before I actually catch on that the question has multiple correct answers. At which point, I’ve already spit out whatever answer I came to first.

    Double shit.

    This story may or may not have a happy ending. But, take away the knowledge that speaking from a position of privilege doesn’t mean that you’re saying what you think you’re saying.

    Asking a woman to “prove they’re a programmer” is linked with sexist remarks slung at women. Yeah, the interview probably didn’t intend it to be sexist, but that doesn’t take away the connotations of the statement. If you intend to include women, first step is to remove non-inclusive phrasing.

    Expecting everyone to not have a disability is ignorant. People with disabilities are expected to compensate for a disability, rather than society accommodate that disability. Demanding that I follow societal interpretations and recognize when this “communication contract” (secret normal people talk pattern) is broken takes away my power.

    Words have meanings.

    They have lots of meanings.

    They have meanings that aren’t even written down.

    Meeting Dr. Duck & More Ableism


    2009 - 12.18

    Tags: , , , ,
    Posted in Disability, Goal, Graduate school, Research | Comments Off

    Dr. Duck has done wonderful work towards outreach and encouraging children to pursue science and math. His name is on several papers that I have come to love, rereading as if they were a beloved novel.

    I wanted to work with him.

    Up until I met him.

    Oh, and did meeting him hurt. My chest, two days later, still feels heartbroken. And I’m so tired of crying.

    I spent my time with him having tears welling up in to my eyes. My anxiety echoing through my head, telling me that I wasn’t safe here and I needed to leave. I cried most of the hour drive home. I didn’t realize why I was so upset beyond that he caused it. I was so happy about meeting him, and now…

    Turns out the person I admired counted disabled people as “other.” He repeatedly told me that his lab does education, not disability. These two  things are mutually exclusive in his mind. I guess disabled children aren’t worth educating; it isn’t an unheard of belief. But, to hear this from someone I admire, someone whose fucking research is education…? I was godsmacked. All the data and stories indicating that society has enforced the failure of persons with disability, the number of children that are disabled, the National Science Foundation (which doled out a lot of grant money to this guy) pushing that people with disabilities are needed to attain diversity in the sciences, none of these things occurred to him.

    When asked about my grades, I mentioned that I got two Cs in Calculus. And I briefly stated that my unaccommodated attention deficit was one of the reasons. “Yes, but what about your grades now?” I know that tone. I’ve heard it before. Directed at my brother who is on the more severe side of ADHD. That’s the tone of a pseudoskeptic. Someone that feels ADHD isn’t really a disability. Obviously, I just didn’t do well in Calculus and am making excuses. (We’ll just ignore the As on my assignments and the confused TAs.)

    I’m still upset now. But, I’m comforting myself best I can that I could have had him actually had him as an advisor; that would be infinitely worse.

    Secondhand Sufferers


    2009 - 12.05

    Tags: ,
    Posted in Disability, Rant | Comments Off

    I’ve stopped trying to find blogs by people that share by disabilities. Searching “[condition/label] blog” doesn’t send me to blogs of people with that condition or label (hell, I might not even get a blog). No, I get to see the ugliness that is “Secondhand Sufferers.”

    The concept of Secondhand Sufferers developed from several years of attempting to find blogs by people with attention deficit disorder. Rather than get blogs by people with ADD, I get bombarded by parents, teachers, doctors, and others affected by people with ADD. These typically refer to children with ADD and focus on the negatives of the disorder.

    Or, to be more precise, the negatives of having to put up with someone with  ADD. The underlining tones are that people with ADD are tiresome, irritating, unruly. But, damnit, they’re going to be helped. Helped being regulated to making people with ADD more normal, behaving within social constraints, etc.

    The emphasis isn’t on whether the person in question wants help, let alone the help of the Secondhand sufferer. The person with a disability is pushed to the background because their condition is “hurting” them. Hurting the person with a disability as defined as “being a burden or irritation for an able bodied person, typically a family member, coworker, or friend.”

    So, what do these Secondhand Sufferers complain about anyway?

    My AD/HD Child Won’t Do His/Her Homework,Chores, or What I Tell Them to!

    First off, this complaint assumes that a child’s disability is the cause of the problem. Why mention it at all? Children independent of disability may be disobedient.

    And the solution? Be stricter and enforce discipline more. This delves into the pseudosceptical belief that children with ADD don’t really have a disability, they’re just undisciplined. In addition, this tactic doesn’t address the why of the child’s behavior, because it’s just their ADD, right? Well, no, not necessarily.

    In my case, if someone wants me to do something they need to tell me: why they want it done, when they want it done by, why the hell I should be the one doing it, and who it impacts and how. Sorry, but I’m not going to waste my time and energy on something that I don’t see as important.

    X Cures/Treats Y

    Alright, there’s lots that’s been said already on why this isn’t okay. So, why is this relevant to a discussion of Secondhand Sufferers? Because many of these people are parents who may implement these “treatments.” Again, there is no statement as to whether the person with a disability accepts the treatment or is in a position to denigh it.

    This is particularly dangerous in regards to diet changes to treat symptoms. Diet changes should be talked over with a doctor, not accepted because someone on the Internet claims that sugar causes hyperactivity, gluten causes autism, etc. In regards to children, they most likely do not have the skills, knowledge or finances to prepare their own healthy, balanced meals and may be forced to eat a questionable diet or starve.

    He/She Won’t Do Anything, Stays on the Couch All the Time, etc.

    More common with pain disorders, mobility limitations, depression, chronic fatigue, and other conditions that limit a person’s energy or mobility, this complaint assumes that the person in question doesn’t need this additional down time. For anyone that thinks lying around is fun: bedsores hurt, boredom is often, and bathroom and eating tasks are fucking hard in a stationary position.

    In addition, the Secondhand Sufferer blames the person with a disability for the Secondhand Sufferer not going out or doing X activity. The Secondhand Sufferer doesn’t just do this activity by/for themselves despite being perfectly capable of doing so.

    And the person with a disability already feels bad about being limited in their activities. This isn’t to say that the person wants to be pitied, but the activities he or she does do must be pretty damned important to them.

    How Not to be a Secondhand Sufferer

    That’s just 3 cases that I can relate where a non-disabled person has, in person, demonstrated that they “sufferer” because I have a disability. So, how should one behave to not end up sounding like a Secondhand Sufferer?

    1. When complaining about a person, don’t mention his/her disability. It isn’t relevant and is enforcing a stereotype of people with a disability. This is a person not a disability that is being talked about.
    2. Don’t suggest or enforce a treatment for a person unless you are this person’s physician. It assumes that you know what’s best, which isn’t the case and insinuates that the person’s symptoms somehow affect you.
    3. Don’t assume someone gets angry at you because of their mental illness. As surprising as it might be, people (even people with mental illness) have the right to be angry at you. Yeah, maybe you don’t understand why they would be angry, but that doesn’t mean their anger is wrong.
    4. Having to change your habits, work styles, or settings to accommodate another person isn’t a fucking hardship for a non-disabled person. I know doing things differently is scary, but just think of it as a learning experience.
    5. Believe a person when they say they need something. If it’s a few hours lying down, prescription pain killers, a larger font size, lactose-free meals, etc., just believe them. Telling a person that they’re making you do extra work, ruining family-time, not pulling their weight, lying or that it is “all in their head” isn’t constructive.

    Any other suggestions? Or Secondhand Sufferer sightings?

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