All posts by kaninchenzero

About kaninchenzero

Kaninchen Zero is a woman-focused social justice activist, queer, trans, poly, kinky, atheist, socialist, a gamer, happy in a legal interracial same-sex marriage in Texas, and nearly forty. She has an overlookable physical disability (she can walk but slowly, painfully, and with a limp) and mental illnesses she can't hide any more. Other blog-ish type stuff can be found at her LiveJournal, her Dreamwidth, and her Tumblr. Short-form fiction is mostly at her story blog. The official short form of her handle is k0, pronounced kaynull or kaynought. The avatar is her own drawing.

How to Be a Good Doctor

accessibility, bodies, happy posts, medical practice, mental health, normality, sexuality, social attitudes, , , , , , , ,

Update: It was pointed out, correctly, that part of this post contained a statement that made a generalization based on age. That statement has been removed and the post updated with this message. It’s not feminist, and it doesn’t belong here. I’m sorry.

I actually had a really good experience with a physician recently. Like outstanding. With a specialist even — an endocrinologist, so if anyone in the northeast Texas general area needs one, I can recommend him without hesitation. I was kind of nervous; I’d seen an endo before when I was starting my transition but stopped because he was a really huge jerk. (My GP wasn’t entirely comfortable with writing scripts for hormone replacement but has been willing to for a while now. She’s also recommended and trans- and queer-friendly.)

Accessibility was poor to okay: I could have done with a chair by the reception window while waiting for them to copy my ID and insurance card. To get from the curb cut by the reseved parking to the front door, one has to go down the sidewalk across the front of the patio to where the ramp up the patio is. At least three cars were parked so that their noses stuck out over the sidewalk. If you couldn’t squish down to 18″/46cm wide, you couldn’t get through there. The doors were all unpowered and the front doors were on the heavy side. I didn’t see Braille signs at all. There was, blessedly, no music and no TV in the waiting rooms. The exam room was freezing; fortunately for me I’m tall and the ceiling was low and I was able to close the air conditioning vent but that’s not a widely available option. There were wide spaces around the furniture in the waiting room that looked like they’d easily accommodate wheels and other assistive devices. Some of the furniture was squishy but some wasn’t and the non-squishy furniture had arms to push up with.

They got to me right about when my scheduled appointment was. They weighed me, measured my height — 202lbs/91.5kg and 5’11 3/4″ (yes, they really measured me to the quarter inch ((sheesh)) and yeah I’m that tall — people comment constantly on how nice it must be which it kind of is except when I’m trying to buy clothes: for all that they love models my height designers apparently don’t believe women don’t come my size and shop at Target)/182cm — with my boots off, and they did bring me a chair for getting them on and off without my having to ask for one.

We waited in the exam room less than ten minutes. Maybe five. The office had mailed me a new patient packet with all the usual stuff to fill out (and the usual uninclusiveness of gender- and sex-variant people on the form, sigh *tick* F). The doctor apparently had spent the five minutes reading and absorbing it because he came in and introduced himself and greeted the wife and me as Mrs. and Mrs. Brown. It felt really good because NO ONE DOES THIS even the people who know we are legally married. Holy shit. The wife explained that I had an autism spectrum disorder and was not having a good day communication-wise. Also that even though I was not talking much today I was plenty smart (which is a construction I’m unfond of) and could understand doctor jargon (this I’m fine with — it’s a skill, not a definition of a person). He told us that on Mondays he had a resident following him around and would we mind if he joined us for the exam?

I’ve had doctors ask this badly before. Often it’s with said resident already present so refusal is an explicit personal rejection and difficult for even a lot of neurotypical folks, never mind those of us with moderate to severe social anxieties. This doctor asked it with the resident on the other side of a closed door. It really actually felt like I could have said no and it would have been okay.

He liked that I had typed up a list of all my surgeries and meds, the dosages, the schedules for taking them, and what they’re for — it’s a long list, twelve prescription meds total — and expressed sympathy that I needed them all. Even though my wife was helping me communicate, he mostly spoke with and to me. Once when he was looking at his notes he missed that I was nodding in response to his question and he apologized for not watching to see my response. When he was working out what labs to order, he noticed what insurance we had and apologized that we couldn’t use the lab in his office but would have to go to the one (not far away) that our insurance company had a contract with or we’d have to pay for the lab work. A DOCTOR. I’ve never run into one that noticed this stuff before, never mind knew what to do with our insurance company.

In short he seemed to be respectful of all the ways I was different: physically impaired, neurologically variant, queer, trans, everything. And genuinely respectful, too, not in that fake-ass “I don’t see the ways people are different from me” bullshit. [Age-based generalization removed by the author.] It was a really nice part of what’s been a string of mostly crappy days.

I’d really rather not have anything endocrinologically jacked up (and given the pattern of other Stuff that has been tested for, I’m not expecting that anything will be very wrong here either). But if I have to have something like that, I’m glad I know who to go to. ‘cos expertise is one thing. Respect like this — on the first time seeing me, on one of my bad days? — is rare. I wish I could drag all the bad doctors I’ve been to and gritted my teeth through seeing to make them watch this young man do brilliantly with a patient who is admittedly not exactly the most conformative person ever and yell “See? This is how you do it! This is how you make all your patients feel like you care about them.”

Cross-posted at Impermanent Records.

Finding Myself in Unexpected Places

introspective, normality, , , , , , , , , , ,

On the way home from work the other day, the classical music station in Dallas, WRR 101.1*, played a really good performance of Beethoven’s Bagatelle for Piano in A minor, WoO 59 “Für Elise”. It’s pretty, of course, which is all it needs to be. But every performance (and every work of art and every published document) is an act of communication among the composer, the performer, and each person sensing it. Every person involved in every act of communication brings xer own perspectives and experiences to the social transaction.

I mention this to provide some context for how I reacted to this particular performance of this piece. I’ve it heard scores of times, probably, but I don’t know if I have since I’ve been thinking of myself as a person with a disability. The parts of it that rise to no real musical resolution felt, to me, like the steps of a dancer with a mobility impairment moving across a stage. Xe walks with a gait and doesn’t move with the precision of a physiotypical dancer, and sometimes it feels as though xe might fall (when the music rises in pitch and stops short of finishing the phrase to return to the core, lower-pitched theme), but xe dances anyway. And xe and xer dance are beautiful anyway. It could’ve been someone a lot like me.

It felt pretty damn good, actually.

Has anything artistic — and I include popular culture in art — recently (or memorably but not so recently) made you feel included? Even if it wasn’t necessarily the creator’s intent?

* It’s owned by the city and actually makes a profit. Naturally various Republican mayors and city council members have called it unfair competition (not that there’s another classical music station in the North Texas broadcastmarket) and have tried various times to get it or the transmission station or the broadcast license sold off. Fortunately for us, they’ve been unsuccessful every time.

Ableist Word Profile: Intelligence

101, Ableist Word Profile, activism, blaming, class issues, feminism, identity, intersectionality, justice, language, mental health, military, normality, shaming, social attitudes, , , , , , ,

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Wait! you may be saying to yourselves. Kaninchen Zero, what the hell is ‘intelligence’ doing in the Ableist Word Profile series? Intelligence isn’t a disability!

Okay, so maybe you’re not saying that. But I’m serious. I hate this word. Hate the concept. With a hatred that is a pure and burning flame. True, part of this is because I get told all the time that I’m like wicked smart. When it’s some of the more toxic people in my family saying it, there’s more to it: You’re so intelligent so why are you poor? Other people use it as an opportunity to put themselves down: You’re so smart; I’m not; I could never do the things you do.

Does intelligence exist? At all?

Maybe it doesn’t.

There are tests that measure… something. They’re called Intelligence Quotient tests. The idea is that these tests actually measure some fundamental, real quality of human cognition — the people who believe in IQ believe that there’s a single quality that informs cognition as a whole and that people who have higher IQs have more of this and think better and perform better generally while people who have lower IQs have less of this quality and perform more poorly. Sorry; it’s a muddle of a definition, I know. Partly it’s a conceptual and linguistic problem — some things are not well defined and these things tend to be the things we consider to be fundamental. It’s much easier to define smaller things at the edges; it’s easy to define a fingernail. It’s harder to point to where blood stops flowing away from the heart and starts flowing back towards it.

The man who developed the first intelligence tests, Alfred Binet, wasn’t actually trying to measure intelligence. He’d done some work in neurology and psychology and education, and in 1899 he was asked to become a member of the Free Society for the Psychological Study of the Child. Primary education in France had become mandatory, so a lot of work on educational psychology was being done due to the large demand and the large available sample population. Binet, and others, were assigned to the Commission for the Retarded. (Again, please accept my apologies; I wouldn’t use the word if it were mine.)

The problem he was trying to solve was how to identify — consistently, without having to rely on the judgment of people who could be swayed by all sorts of personal biases (as we all are, including me) — those children who needed extra help. Maybe they had developmental disorders, maybe they had learning impairments along the lines of ADD/ADHD, dyscalculias, dyslexias, maybe malnutrition, injury, or childhood disease had caused neurological damage or limited development. The specific etiology wasn’t the point; the point was to be able to know who these children were and get them assistance. Which may be ascribing too-noble motives to him, but he doesn’t do so great later. Continue reading Ableist Word Profile: Intelligence →

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.

Email Q&A: What About Womanists?

administrivia, feminism, identity, intersectionality, introspective, language, , , , , ,

We’re not even a week since the roll-out, but the response so far has been tremendous. Along with the excellent discussion in comments, we’ve gotten some really great questions, like this one (which we’ve paraphrased from the original email):

Why is the name of the blog Feminists With Disabilities? Wouldn’t it be more inclusive, especially of women of color, if the name acknowledged the womanist movement? Say, Feminists and Womanists with Disabilities?

We’ve been discussing this since we got the email, and we’ve come to a consensus that for now, we aren’t comfortable using womanist in the title of our blog. None of the current group of contributors identifies as a womanist. While we aren’t all white, those of us who are women of color identify as feminist. Those of us who are white don’t want to be disrespectful of the work womanists have done and are doing and appropriate their word for their movement created specifically in response to white privilege and oppression.

We also do not want to imply that we are authorities on womanism and that anything about womanism needs to change by including “womanists” in the title. Many of us are concerned with the historical exclusion of women with disabilities from mainstream feminism, and that exclusion is the primary focus of this website.

None of this means that we don’t welcome womanists and womanists with disabilities to join us as readers, as commenters, as guest posters, and as contributors (and if someone who did identify as a womanist did join us as a contributor we would revisit this issue). We want to create a safe space for all women here, and we do not want womanists to feel excluded; they have much to add to the conversation, and we look forward to hearing from them. We hope that FWD will be a place where inclusivity and respect are the rules rather than the exceptions.

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