FWD/Forward » kaninchenzero

Quick Hit: Parents of Disabled Children

kaninchenzero — Fri, 13 Aug 2010 15:17:58 +0000

This is gonna be short ’cause I hurt and it’s hard to think and type and all that shit what’s good for writing.

Another parent of disabled children has killed ou children. Ou regrets having done it and immediately notified police of ou actions. Responses of shock and horror from media and across internets.

But. It doesn’t take long before there are articles like “Parents of Children With Autism: We Struggle Alone” at the Dallas Morning News. This is bog-standard parent of autistic child shit and not worth reading. (Y’all may consider yourselves warned about clicking through and especially about reading any comments that may be present.) It is easily summarised: Parents say, “Oh that was so horrible I’d never ever never even think for a moment of harming my autistic child. But…” There’s a lot of subtextual sympathy for the person who murdered ou children. Just as there always is. In the midst of all the parents-are-on-their-own there are blithe assumptions that help is available. It costs a lot of money but is available. All the accompanying photos are of apparently white people in nice homes.

Nothing we’ve not seen before.

It’s notable because I happened to come across it in the print edition of the paper and its placement there. On the front fucking page of the Sunday fucking paper. Below the fold and tucked into the bottom right corner but still. Being parents of disabled children is so hard that killing them is an option many people will sympathise with is news big enough for the front page. Of the Sunday fucking edition. This is prime newspaper real estate.

The Dallas Morning News uses it for this shit. And my wife wonders why I’m so ‘hypercritical’ of news about disabled people.

Damn Y’all White Wolf

kaninchenzero — Wed, 23 Jun 2010 19:55:54 +0000

My [biggest] fandom is White Wolf’s Exalted. I’ve complained about it before and I’ll complain about it again.

I build characters because it’s fun and I often spend a lot of time working at it trying to make a person rather than a collection of attributes. Right now I’m working on a character who I actually have an expectation of playing and as ever I’m borrowing much from my life and some from various other places. This person is a rabbit (specifically this rabbit) shapeshifter with a very big hammer. Ou has told me ou doesn’t speak and I try to listen to my characters when they tell me things.

Also disabled folk can damn well be heroes. They don’t have to ‘overcome’ their conditions neither. I will try to not fuck this up too badly. Transient dysphasia and aphasia are conditions I have personal experience with but not full-time.

Thing is: Because I’m making a new character I’m taking an enormous hit on experience and power — the character I’ve been playing has more than twice as many experience points as the GM is giving me for my rabbit person. Ouch. (But I’m getting to tell a new story.) So I may do something I’m not entirely comfortable with: Use the Flaw system built into the game.

See, you can get points to buy Cool Shit by taking Flaws. Some of them are okay, like being wanted by authorities or being widely known as a demon or whatever. Some of them are more problematic, like missing body parts, mental illnesses, communication and sensory impairments.

Here’s the one for not speaking:

Mute
Cost: 1 pt. or 4 pts.
Your character is unable to speak normally. For one bonus point, the character is simply unable to speak above a whisper, while complete dumbness¹ grants four bonus points. A character with the one-point version automatically fails all Performance or Presence checks that require public speaking but faces no penalty on social attacks as long as his target can hear him, which requires the target’s player to succeed on a (Perception + Awareness) roll at difficulty 2.

A character with the four-point version of the Flaw automatically fails all Performance or Presence checks based on verbal communication and suffers a -5 penalty on all social attack rolls made for her unless the attack expressly has no verbal component. While there is no universal sign language in the Age of Sorrows, the character and her allies can communicate through an informal sign language if each of them commits one Linguistics slot to it.

Just kind of as an aside they tell us there are no widely-known gestural or tactile languages. None. There aren’t regional languages even. Anyone wanting to use one has to make up their own and teach it to whomever they want to communicate with. Deaf people wanting to build a community are going to have a tricky time of it in canon Exalted.

Sometimes I hate my game. I could use those four bonus points but that’s some horrible shit. But not using this mechanic isn’t going to make it disappear from the game either (there’s another player whose character made use of it — as a hot blind assassin chick). The casual disablism is not exactly unusual for gaming (and this isn’t even the worst example of disablism ((or casual bigotry)) I could pull from Exalted) where currently non-disabled developers assume a currently non-disabled audience and write accordingly. Because heroes are CND or super-crip amirite?

So yeah. I’ll probably do it. I’ll just feel icky about it. :(

Cross-posted: Aperiodically Legible.

Hi there, dumb means does not speak! I have not missed you. ↩

Where About Us But Without Us Leads

kaninchenzero — Thu, 03 Jun 2010 08:25:54 +0000

On 1 June 2010, E. Fuller Torrey MD wrote an op-ed column for the New York Times, “Make Kendra’s Law Permanent.” Dr Torrey is the founder of the Treatment Advocacy Center (TAC), a nonprofit group whose sole purpose is to lobby states for the passage of so-called assisted outpatient treatment (AOT) laws like Kendra’s Law in New York and Laura’s Law in California. The New York law is named after Kendra Webdale, who was killed by Andrew Goldstein in 1999.

Dr Torrey and TAC will tell you Mr Goldstein had untreated schizophrenia. They’ll tell you people like him are dangerous, they’ll tell you people like Mr Goldstein are often so sick they don’t understand they’re ill and need treatment, and they’ll tell you they know best. They won’t tell you that Mr Goldstein had been seeking treatment desperately and been turned away repeatedly.¹

They’ll tell you there are no racial disparities in the implementation of assisted outpatient treatment despite 34% of AOT orders being imposed on African-American New Yorkers and 30% imposed on Hispanic New Yorkers; they make up 18% and 16% of the total population respectively, while non-Hispanic whites, who received 34% of AOT orders, make up 63% of the general population.² The Services Effectiveness Research Program in the Department of Psychiatry and Behavioral Sciences at Duke University Center was awarded the contract to evaluate New York’s assisted outpatient treatment program under a requirement of the 2005 reauthorization of the law. (The Wikipedia entry on Kendra’s Law states, wrongly, that the Duke University study was independent.) Their findings were that there were no racial disparities — when the data were controlled for factors such as poverty and diagnosis with serious mental illness such as schizophrenia.

Which, if I’m reading that right, says that when they control for the effects of racism in society (poverty disproportionately affects non-white people) and racism in the mental health professions (non-white people are disproportionately diagnosed with schizophrenia when white people presenting with similar symptoms are diagnosed with less ‘serious’ mood disorders), the racial disparities in the implementation of assisted outpatient treatment disappear. It’s fucking magic. Okay, so this particular program may be following the same rules as everything else, but those rules are set up to have a disparate impact on non-white people already.

Make no mistake, the assistance provided in assisted outpatient treatment is the armed force of the state ensuring that persons who fall under the purview of this law and those like it comply with any and all aspects of the court-ordered treatment plan. Assisted outpatient treatment is strictly from Minority Report — the person needs have no actual history of violence and need not be judged to be in immanent danger of harming ouself or others.

I can’t get the actual text of the law (the site for the New York Legislature keeps giving me internal server errors when I try to get the Mental Hygiene Law) but here’s some excerpts from a summary on the law from the New York State Office of Mental Health³:

AOT Criteria

No person may be placed under an AOT order unless the court finds by clear and convincing evidence that the subject of the petition meets all of the following criteria:

Is at least 18 years old; and

is suffering from a mental illness; and

is unlikely to survive safely in the community without supervision, based on a clinical determination; and

has a history of lack of compliance with treatment for mental illness that has:

prior to the filing of the petition, at least twice within the last thirty–six months been a significant factor in necessitating hospitalization in a hospital, or receipt of services in a forensic or other mental health unit of a correctional facility or a local correctional facility, not including any current period, or period ending within the last six months, during which the person was or is hospitalized or incarcerated; or

prior to the filing of the petition, resulted in one of more acts of serious violent behavior toward self or others or threats of, or attempts at, serious physical harm to self or others within the last forty–eight months, not including any current period, or period ending within the last six months, in which the person was or is hospitalized or incarcerated; and

is, as a result of his or her mental illness, unlikely to voluntarily participate in the outpatient treatment that would enable him or her to live safely in the community; and

in view of his or her treatment history and current behavior, is in need of assisted outpatient treatment in order to prevent a relapse or deterioration which would be likely to result in serious harm to the person or others as defined in §9.01 of the Mental Hygiene Law; and

is likely to benefit from assisted outpatient treatment.

A court may not issue an AOT order unless it finds that assisted outpatient treatment is the least restrictive alternative available for the person.

There are other troubling parts to the law: damn near anyone can file a petition to have a person placed under assisted outpatient treatment, including any adult room mates, parents, spouses, adult children or adult siblings of the person. There are confidentiality problems with the way information is treated under the law, distributing clinical information about persons with AOT orders to mental health facilities across the state.

And it’s not necessary. Andrew Goldstein had been seeking treatment. The non-coercive parts of Kendra’s Law, the grants for community treatment and medications, those are helpful and helping. We need access to effective community treatment. Unfortunately in this age of budget shortfalls and funding cuts I don’t see access to community mental health treatment increasing.

This quote from Dr Torrey’s op-ed piece struck me as particularly telling:

The people who could be treated under Kendra’s Law account for only one in 10 seriously ill psychiatric patients. But when these people are untreated, they also make up one-third of the homeless population, and at least 16 percent of the jail and prison population. These people are ubiquitous in city parks, public libraries and train stations. And a small percentage become dangerous, even homicidal.

One in ten is not an only, one in ten is a very large fraction of any population. We — I am seriously mentally ill (and not compliant with every treatment recommended) — are over-represented in jails and prisons because we can’t get adequate treatment in our communities. We stop taking meds that make us sick because newer meds with fewer unpleasant side effects are, well, new. And expensive. Seroquel is still under patent; risperdal isn’t.

We are unsightly. We make parks and libraries and train stations unpleasant for non-mentally ill folk. We make things difficult for our families when we don’t take our meds. Dr Torrey and TAC and the National Alliance on Mental Illness and all the other family-of-but-not-mentally-ill advocacy groups out there want it to be easier to make us take our meds. So they play on fears and tragedies. Because we aren’t actually any more likely to commit violent crimes than the population as a whole. It’s just that when we do commit them we fit neatly into an existing and convenient (and heavily reinforced thank you ever so much every TV and film cop drama ever) narrative that mad people are violent and unpredictably so. Even homicidal!

But Dr Torrey knows how to save everyone from us. He just has to convince enough people that we shouldn’t have the same rights to due process as everyone else.

So far it’s not been that hard. Almost every state has some version of an assisted outpatient treatment law, largely thanks to the lobbying efforts of Dr Torrey himself and his organisation. He decries that the laws aren’t used enough. (Someone in his organisation is likely responsible for the ghastly Wikipedia entry on Kendra’s Law, which portrays opponents to making it permanent as anti-psychiatry and *gasp* liberals. Sheesh.)

And Andrew Goldstein has pleaded guilty to manslaughter, after one trial where the jury failed to reach a verdict, a second trial where he was convicted and sentenced to twenty-five years to life — but the conviction was overturned on appeal because a witness gave second-hand information — and I suppose he didn’t want to go through it a third time. He’s been sentenced to twenty-three years in prison plus five years supervision. I expect he’ll be forced to comply with court-ordered psychiatric treatment for the rest of his life.

Source: Time Magazine, “Will the Real Andrew Goldstein Take the Stand?” ↩

Sources: New York State Assisted Outpatient Treatment Program Evaluation, Wikipedia: Demographics of New York, New York Times, “Racial Disproportion Seen in Applying ‘Kendra’s Law,” 7 April 2005 ↩

Source: New York State Office of Mental Health: AOT Summary ↩

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Recognition

kaninchenzero — Wed, 21 Apr 2010 22:27:30 +0000

Y’all may know I’m mentally ill. I have mentioned a time or eighteen. It’s a thing I do, talking about my experiences with mental illness and mental health care, trying to provide an anecdote to do with the data.

What I talk about somewhat less is having cognitive variations and learning disabilities. Which I do. Most of my life I thought I didn’t. I was never evaluated for learning disabilities; I got good marks in school (some of the time). I was not evaluated for autism spectrum disorders. When I was a child ASD wasn’t a diagnosis at all. There was just autism and the perception of it was really scary: autism meant kids who didn’t talk at all and had to be put in helmets so they didn’t hurt themselves too much from banging their heads against the wall and lived in institutions. Autism definitely didn’t mean anyone like me. (Even though I did have repetitive motion behaviours — my relatives talk about it a lot as a cute baby story.) When autism spectrum disorders did become diagnoses in the U.S. I was an adult and adults are rarely evaluated for autism. Or cognitive variations. Or learning disabilities. They’re childhood things aren’t they? (Don’t those kids grow into adults?)¹

It is real damn frustrating. It’s hard to start anything and harder to finish what I do start. I would love to be organised but I can’t; when I have to put something in my hands down I have to put it down now and that means wherever I’m at and not wherever that thing lives. Sometimes digits transpose when I am reading or keying or writing them and sometimes the words I read are not the words on the page but I learned a long time ago to compensate well enough no one knew. I compensated well enough I forgot I had this thing that might be dyslexia until I started paying attention to what my perceptions and thoughts were doing. I have a lot of trouble communicating in person using my voice — I don’t process speech well and I don’t speak well.

And sometimes I am just not good at thinking. (Lately this has been a lot of the time.) It’s hard to even complain about having trouble thinking to my wife. She perceives it as Moira Is Being All Negative About Herself Again and she interrupts me with “You’re not stupid. You’re one of the smartest people I know” and I’m all faaaaaaack what’s the point? and I just shut up again. I’ve had this conversation and it doesn’t go anywhere nice.

Thing is I’m not saying “I feel stupid and I don’t like myself for it.” Okay there’s some of that I wouldn’t be me without some of that but it’s more frustration at not being able to do shit what is needful. I am trying to say I feel stupid and I need help doing shit. Please. Being smart does not help me. Being able to rattle on about how cool quantum mechanics was when I finally managed to lose the distortions dualism imposes on quantum-scale stuffs and wrap my head around monist models of quantum-scale mechanics is not a useful skill in daily living. In fact being perceived as highly intelligent whilst actually having cognitive impairments has been an enormous pain in the ass. People assume because I can understand quantum mechanics and high-order differential equations (and possibly most important because I have a talent for writing) I am globally smart and can apply that intelligence to any problem needing solving. Which I can’t. But I have trouble getting help because I’m smart.

It’s more than just “Gosh Moira you should be able to do these things.” It’s also “Gosh Moira you are so smart you can’t possibly have cognitive impairments.” And people feel taken advantage of when they do help. They’ll see me do something fucking ludicrous nerdy like building a reference document for my tabletop role-playing-game using endnotes and a bibliography in compliance with The Chicago Manual of Style. I can’t blame anyone for wondering why — if I can do that — I can’t do something that. Y’know. Pays? There’s a Voice in my head saying the same thing all day every day. (Most of the time it looks like I’m working on the nerd project I actually spend not working on it. It’s just since no one’s paying me to do the nerd project no one cares if I’m reading manga instead of working.)

Only rarely do I get any farther than “I feel stupid” before I get cut off. It’s exhausting, trying to get the rest of this said and heard, so that’s usually where it stops. In text — in a blog post — I can say it all at once. Nobody has to read it all, but I can say it. There’s maybe a better chance for communication this way.

On my Big-Ass List of Shit What Needs Doing is finding someone who can do that evaluation and see about official diagnosis; if nothing else it would help to have to throw at the Social Security Administration for disability stuff. But some people who have known me a long time and are not unfamiliar with autism traits have said that autism is not inconsistent with my history and my behaviour. Even if they don’t feel qualified to make a full-out diagnosis. They include my wife — who is admittedly not all that objective but it is kind of her field (one of her Master’s degrees is in psychology) — and my general practitioner (who reads up on things her patients ask about when she doesn’t know) and the therapist I’ve seen, off and on, since before I met my wife. What with there being rather a lot of spite for people who are ‘self-diagnosed’ I usually write about the traits directly and avoid the diagnostic label. But I’m reasonably confident I am actually autistic. The Bad Self-Diagnosed Autistic Person who full-out claims an autistic identity with all the negative parts that go along with and is doing it to be an enormous jerk seems to be a unicorn. But I have seen hatboxen in fora like F•rk write hatboxish shit and follow it up with “i cant help it i got teh assburgers hur hur” which is yeah appalling behaviour. ↩

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Tasting Fear

kaninchenzero — Mon, 15 Mar 2010 03:52:39 +0000

[This here is a warning that the author has written a post about, amongst other things, being depressed and suicidal. For this reason there is a clicky thing. Use it in whatever health you got. Also please note that with respect to my wife and our marriage you are getting exactly one perspective--mine--and everything is filtered through my experiences of abuse. This is not an objective reporting of events.]

Y’all who’ve been following this adventure know I’ve been fucked up for a while now. It’s been next to impossible to get any work done–it took me until five-thirty this morning to get caught up on my inbox. Today I got to explain why I should keep my job. On the phone. I don’t know as I was very convincing. Being highly ambivalent about wanting to keep it at all isn’t helpful with the convincing. Nor the panic that comes with phones, the stammering dysphasia aphasia that is so heavily influenced by stress.

Maybe I’ll get to keep it through the end of the month. I keep telling myself I should be at my desk now working.

I’m in bed with the notebook and I haven’t gotten dressed. I woke up six hours ago.

The thought of telling my psychiatrist about this makes me feel sad and hopeless: I told him about being sexually abused and he said something that sounded really perfunctory about being sorry that happened to me and moved on to meds. It’s how he does. He is actually pretty okay compared with other psychs in my experience–I’ve dealt with far worse. I’ve had a few better, but I’ve had way worse.

I dread telling my therapist. I’m kind of dreading telling her much of anything. I feel really battered and not. safe. after last week’s session with her and my wife. My wife worries I spend too much time on computers. (She is also hurt that I seem to want to spend more time with the machine than with her.) I read things that upset me. I was happier and more stable when I got out of hospital and had been offline for a couple weeks. I am terrified they want to take this away from me. They both speak better than I do and process speech better than I do and I don’t think I could defend myself if I had to. I did really badly last week.

They want me to not hurt. I’d like me to not hurt. It would be awful nice. I don’t know how to stop hurting. They both are unhappy when I react to things they do and say the way I react to things my abusers have done and said. They do the same actions. They say the same words. They want me to react differently because their intentions are different and I should know that.

They say their intentions are good. They want what’s best for me. They love me and want me to be healthier and stronger.

That’s exactly what my abusers said. Often while they were beating me or humiliating me or throwing away my books and music and clothes or trying to ruin my intimate relationships with anyone who might have provided support outside the abusive relationships. They love me. They want what’s best for me. They want to take care of me. Even if I could know their intentions for certain which I can’t what good does it do me when they have the same intentions as my abusers?

What the fuck am I supposed to do? I am not getting better. I am afraid of the caregivers in my life. It feels as if my employers and my therapist and my wife are angry with me for what being sick does to me and I somehow manage both to accept this as something I deserve because they’re not wrong I do suck and to be hurtangryafraid because I’m sick and I need help. I am going to be unemployed and unemployable real soon and there’s about zero chance I can actually navigate the bureaucracies for getting government assistance without help.

The parts of me that hate me and want me dead keep telling me there’s a thing I can do. It would make all the fear all the anxiety all the hurt stop. Forever. I’m afraid there will come a time I will no longer be able to keep telling it no. It’s exhausting. It is a thing I have to fight against every day. Those same parts of me that hate me and want me dead tell me I shouldn’t say this. I have no right to say this. It’s melodramatic. It’s manipulative. I’m just trying to get attention by bleeding in public and that’s inappropriate in teenagers never mind someone thirty-eight years old.

I fear those parts of me are right about everything. And I am so very tired.

Cross-posted to kaninchenzero’s Tumblr.

©2012 FWD/Forward. All Rights Reserved.
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We Need to Consider More than Universities

kaninchenzero — Wed, 10 Mar 2010 00:42:35 +0000

There’s a lot of really good stuff out in the blogoamorphia¹ about sexual assault on uni campuses. The focus is specifically on USian colleges and universities though Rape Culture exists pretty much everywhere with only slight variation. It’s worth reading, if you’re up to reading about sexual assault at all. (I’m not always.)

Predators are good at target selection. All of them. We see this in the uni rapists who repeatedly assault vulnerable young people. And the analysis of these assaults and assailants is valuable. I hope the attention being focused on this issue leads to real change in how sexual assault is treated by colleges and universities because the status quo is disgusting. Victims are made to undergo ‘mediation’ with their assailants in the name of ‘fairness;’ people known to administrations to be serial rapists face only the most cursory of punishments while their victims often leave, faced with an environment that could hardly be more obviously hostile; the government agencies tasked with reducing rape on uni campuses in the US have hardly bothered to appear to do anything at all.

But I’m a little uncomfortable that the focus is on the most privileged, most visible, most likely to be photogenic segment of sexual assault victims. Not that these people don’t need or deserve attention–they do. (And really I’d like there to be much more awareness that the things cis men do to each other are not HILARIOUS PRANKS but are sexual assault and should be treated as such. Cis men, you have a task: Even if you can’t be arsed to end sexual assault of other folk by cis men, you may wish to end assaults on yourselves by cis men. Hop to it.) I just worry that the pattern we see so often where the most privileged people are centered and marginalized people are pushed to the edges will repeat itself. That sexual assault victims whose circumstances differ will have a more difficult time being heard. That there will be a sense of “Well fuck we already had to care about these college [het cis probably currently non-disabled largely white largely middle-to-upper-class] girls getting raped and now you want us to care about you? Sorry, we’re all out of giving a shit.”

Because predators aren’t just at universities and colleges. All those uni students will leave school eventually. Not all predators even go to uni. They will all be looking for targets. Not only will they choose targets that are vulnerable and have a low risk of incurring negative consequences, they will seek out environments where there are large concentrations of their preferred targets. They will search for jobs where they will be in positions of authority over those targets. Predators that prefer children try to get jobs in schools or in religious settings. Predators that prefer disabled people, mentally ill people, or elderly people look for work in hospitals and supportive care facilities. Predators that prefer sex workers become pimps or police.

Part of the problem is going to be that people will be able to relate to the uni predators better. University-age women are often attractive people by accepted standards of beauty. Raping a pretty young cis woman is understandable–the rapist was attracted to her and wanted to fuck her and wanted to cut through all the preliminary bullshit and get right to the fucking. It’s harder for people to imagine wanting to fuck children or older people or disabled people or crazy people or fat people. Who’d find that attractive? (Who would rape you?)

It isn’t about sexual attraction. A predator’s preferred type of victim may not have anything to do with the sort of people xe finds attractive in non-predatory relationships (assuming xe has any) and may be of a different gender from xer orientation. Cis men who identify as straight and prey on children who read as male by ciscentric standards aren’t necessarily lying about their orientation, even to themselves. Predation isn’t about sex despite there being sexual gratification involved. (Though the predator xerself likely doesn’t understand this.) It’s about the predator making xerself feel powerful by stripping xer victims of power. It’s about the predator boosting xer self-confidence by humiliating xer victims. It’s about the predator feeling safer by making someone else afraid. It’s about hate. It’s about entitlement. It’s about controlling the behavior of others. And like all kinds of abuse, it’s about making the victims responsible for the emotions and actions of the predator.

Sex is just the mode of abuse. The choice of victim is about getting away with it.

So how do we not lose track of this? How can we address the issue of rape on university campuses without centering that experience of rape and marginalizing others? How can mainstream anti-rape activists not treat our experiences of rape as Other, as exotic, as something incomprehensible? Because that path leads to paternalism and patronization. It’s not good for us no matter how well-intentioned. It’s the sort of thing that leads to disabled people with ovaries being sterilized without their consent or knowledge at the behest of guardians who simply assume, with ample justification, that they will be raped in institutional care facilities. Since there’s nothing they can do about that (as we all know rape is a force of nature and not an act performed by humans capable of changing their behavior²) they can at least protect those people with ovaries from some of the potential things that could result from said rape. That one of the things they are protecting people with ovaries from is the possibility of bearing a child and being a good and loving parent–which happens even when a child is conceived by an act of rape–doesn’t occur to them. They know best, and they can’t imagine this person they’re placing in an institutional care facility being a good parent.

Cross-posted from my tumblr blog, Rabbit Lord of the Undead.

Sphere, pshyeah. ↩

MY SARCASTIC VOICE LET ME SHOW IT YOU. ↩

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This is Why We’re Always on about Language

kaninchenzero — Thu, 04 Mar 2010 20:47:43 +0000

I’m not linking to the original source because the specifics don’t matter. This isn’t about the individual people or the individual documents involved. This is just an example of how the use of ableist language harms disabled people. Sometimes our posts on ableist language are on the abstract side, so here’s something real concrete. The ableist language is “insane” used to mean “this is bad.” The disabled people are me and everyone else who has been abused and has mental illness.

Some context is necessary, though. The first quote is from the comments thread of a post on intimate partner abuse. More specifically it’s about the way people outside the abusive relationship contribute to the abuse. Even staying “neutral” or “not getting involved” contributes to the abuse: when power is unequally shared among people in a relationship, staying neutral is siding with the person with the most power. But much of the time people don’t stop with that much. They actively side with the abuser. (The reasons for this is a subject for another post. Graduate degree dissertations. Books. I’m headed in a different direction right now.)

One of the commenters expressed disgust with the people who’d taken the side of the abuser and ended the comment with:

How insane is that?

Here’s my reply.

It is appalling, frustrating, disappointing. It makes me want to cry every goddamn time I see it because I know my abusers are fine upstanding successful people and I’m fucked up and broken and poor.

It is not insane.

I am insane. I have had delusions and paranoia and hallucinations. There are parts of me I do not talk about ever because I am deeply ashamed of them: what’s wrong with me that this is in me? How can I be this fucked up? I spend every day working on not killing myself because the parts of me that hate me and want me dead never shut up.¹

I would like, please, to not have to be the metaphor for abusers and their abettors as well as their victim. I carry enough shame already.

This is why we talk about ableist language. It’s not because we hate fun. It’s not because we have no sense of humor. It’s not because we want to take people’s words away.

It’s because we shouldn’t have to be the metaphors for our own oppressions.

Unfortunately, none of this is even exaggerated. ↩

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I Hope You Feel Better

kaninchenzero — Tue, 08 Dec 2009 13:00:23 +0000

I hope you feel better.

They mean well. They always do. It’s what people say when they hear someone they know is in pain or ill or uncomfortable. I’ve learned that tears and “Why would you say that to me?” while an accurate reflection of how it makes me feel is pretty much guaranteed to lead to all sorts of unpleasantness I don’t want to have to deal with.

Whoa where did that come from I was just trying to be nice. What’s wrong with her? Can’t you just take it for what it’s meant?

I really can’t. For one thing my brain doesn’t process subtext quickly enough to have conversations at full neurotypical voice conversation speed — I’m doing the best I can keeping up with the text alone. But I don’t wear a sign that says “I am not good at auditory processing.” If I did I’d be explaining that all the time too. I don’t like talking that much.

(What’s that mean? It means I hear fine. I hear everything. ((When tinnitus isn’t in the way meh.)) What I have trouble with — and sometimes it’s harder than others — is pulling the thread of one person’s voice out of everything else that’s coming in through my ears and turning sound into meaning. If there’s a television in my visual field this task gets harder. This is why I take books to restaurants; I usually can’t make out what the person I’m eating with is saying anyway.)

Well. I can take it as it’s meant when it’s someone who doesn’t know me. When the person saying it doesn’t know that I have a disease that leaves me in pain all the time and exhausted all the time and makes it hard to walk and think and work and all the Weird Shit that goes along with it I can accept “I hope you feel better” because it doesn’t actually mean anything. It’s just politeness.

When the person who’s saying it has heard me or read me (often we’ve also had the conversation amndaw wrote about in her Who Hates to Hear They Look Great? post) it hurts. Lately I’ve been not eating much and throwing up a lot and it’s not a lot of fun. I mentioned that I didn’t feel good at my LiveJournal and every comment was a form of this. I even got one in imperative voice: “feel better soon.”

I have a chronic disease that isn’t curable and I have not heard of it going into remission. This is not temporary. Sometimes the symptoms are excruciating. Sometimes the symptoms aren’t so bad. They never go away. Even if I never feel any better than I do right now my life will still be worth living and I’ll still be happy and I’ll be okay because I work really hard at living my life and being as happy as I can in it. For me it includes accepting that I will not get better. It also includes some complaining about feeling rotten because accepting that I won’t get better doesn’t turn it into rainbow-flavored unicorn shit.

Demands that I feel better discount all that.

I want to tell people to please not say that to me. But I know how it’ll go. I’ll be the mean cripple yelling at people who were just trying to be nice. So I mostly don’t say it.

Bonus Section:
Since most essays from marginalized people on the topic of Insensitive Things Privileged Folks Have Said To Us will garner at least one comment along the lines of “Well if you’re going to tell people they shouldn’t say whatever how about you tell us what we should say.” At which I’m like thanks for the derailment attempt that’s so thoughtful! I am so delighted to do this work for you you have no idea. But I do actually have something here. An expression of sympathy that doesn’t include a request or demand that I do something impossible is always nice. I’m a really big fan of “That sucks. I’m sorry you don’t feel good.”

©2012 FWD/Forward. All Rights Reserved.
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I’d Rather Be Dead

kaninchenzero — Tue, 24 Nov 2009 16:30:39 +0000

I didn’t think I’d need to do this but it has come up: This post is not a place to discuss the merits of assisted suicide. Many disabled people, including me, find it really unsettling. In the context of able-bodied and neurotypical people telling us our lives aren’t worth living it is especially inappropriate. Comments on the subject will not be published.

Warning: The following includes graphic descriptions of medical unpleasantries.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I have a chronic pain condition. Most of the time I don’t bother getting into detail because I don’t feel like it but it’s illustrative here, so I’ll share. I live in pain. It pools in my hips and my left knee and my right shoulder and sometimes my legs turn to stone. Every step I walk hurts and I keep getting slower and more labored. (My disability is invisible only in the most technical sense. Fortunately people have lots of practice not seeing disability! So, phew.) Sometimes, like the other night, my hands hurt so much I can’t get the non-child-resistant easy-open top off the bottle of pain meds.

(If my hands hurt so much why do I type? Why not use a voice writer? Because this voice here, this is the voice I write with. This is not the voice I speak with. I would write far less if I had to use my voice to do it. And it’s only pain.)

And then there’s the Weird Shit. (It’s a technical term.) I take antibiotics daily because if I don’t I get a urinary tract infection which leaves me crumpled in the bathtub screaming, gushing blood, graying out, waiting for the big antibiotics to get working. Sure I could go to the emergency room and I have — where they give me the same antibiotics I’d get from calling my urologist’s answering service and pain meds weaker than what I take daily. And I get to deal with having medical professionals react to me being trans* and poor.

A sore throat once turned out to be a fungal infection, another one was a tonsillary abscess, the treatment for which was getting stabbed with a large-bore needle then having the contents of the abcess squished out. It was about as comfortable as it sounds, and it tasted every bit as good. I did not bite the nurse practitioner who was treating me. My general practitioner later looked at me really weird when I expressed concern that my next sore throat (it was just a virus and a runny nose) might be one of these until I explained that I’d actually had these things.

The big one was when a cold — in the space of three weeks — became bronchitis, then pneumonia. If I rolled onto my right side, I felt like I was drowning. If I sat up, I felt dizzy. A chest x-ray showed much of my left lung was wrong. I was admitted to hospital that day, the five doctors that came that night took my wife into the hall and told her the things that could be killing me. There was fluid in the space around my lung. They poked at me and stuck a needle in and drew off three hundred millilitres. I didn’t get appreciably better. They installed a peripherally introduced central catheter so they could give me vein-killing antibiotics like vancomycin and aureomycin. The fluid they’d drawn off, cultured, proved to be sterile. More chest x-rays showed shadowy bits around my heart and more imaging showed fluid buildup there too — between having a lung and a third to breathe with and a heart working under the increased burden, I was understandably tired. Even more understandably when some time during the week I was in hospital, my red blood cell count fell through the floor. They were tracking everything that came out of me so it wasn’t like the blood was going anywhere, it just… vanished. They gave me more blood. Later they got the bright idea of drawing off the fluid around my lung at least and took me down to radiological medicine. I got to sit up for it. They did throw in some lidocaine, which at the time I hadn’t figured out that I could say “Hey I don’t metabolize this like most people I need more time for it to take effect before you start stabbing me with shit” so the ginormous fucking needle they stabbed me in the back with? I felt most of that. Ow. I wasn’t supposed to see it (mustn’t discomfit the patient, even if she finds things comforting that most people don’t), but I got a look at the three-litre vacuum bottle half full of murky green fluid they’d sucked out of me. I felt much better, though that lung felt crinkly like cellophane from having been collapsed so long. It was a teaching hospital, so the place was crawling with med students who all (I heard — the nurses wouldn’t actually let them come near my room for which I am still grateful) made excuses to come read my chart. I was medically interesting. I never did get a diagnosis. A real diagnosis, I mean. I know full well that ‘idiopathic pericarditis’ means ‘the membrane around your heart is inflamed and we don’t know why.’

On a fun side note, while I was in hospital busy being sick with Weird Shit I kept getting calls from work. I was the only person in the company who knew how to do what I did, so I provided user support. From my hospital bed. On morphine, with blood running into my arm. It was kind of impressive, in an appalling way. When I was home (I was out of work almost two months and none of it was remotely vacational — at some point I’ll write about having had a whole week of vacation in the ten years since my diagnosis with this chronic pain condition) they sent someone to bring me a computer so I could do some things, occasionally.

I’ll stop with the Ways Kaninchen Zero Is Very Very Ill now. The point is yeah, there’s a lot going on. Most of us could tell similar stories, or scarier ones.

I cry, often. Even with the meds I’m in a lot of pain all the time. I’m exhausted, all the time. I work thirty to forty hours a week in spite of it (though I’m running up against the limits of that too).

People who don’t live with chronic pain wonder how I do this. How do I live with this much pain? How do I keep going? How have I done this since I was a teenager? (I’m thirty-seven now.) I must be a fucking paragon of moral fortitude, because (I’m told) I’m not even all that bitter about it (though I am, sometimes). I’m happy, when I can get around the depression I’ve carried most of my life too.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I hear this a lot. It’s actually not a secret, though I think the able-bodied are somewhat afraid of the answers. It’s not even difficult. Most anyone could live my life, probably. I have a good life. My doctors listen to me when I tell them what’s going on with me which is wonderful after so many years of being told I wasn’t in pain because the tests didn’t show anything. I have books, games, computers. Because of the last I have friends and I fall in love about five times a year. (I’ve been working on doing things that scare me and I’m telling people more that I’m infatuated, crushing, in love. And that they don’t have to feel the same way about me at all.) Sometimes I can actually stop writing a story and call it finished.[1]

Here’s how I do it: I want to live. I don’t want to be dead. My life is worth living. It’s not tragic. It’s easy. We’ve all got the means to get acclimated to a new home, new furniture, changes in climate and environment. Having a different bodily environment or neurological environment is just something else to get used to.

The commenters in the Why Are They So Angry At Her? thread have it right, I think. The physio/neurotypical haven’t bothered to consider our lives from any perspective but their own and all they see are limits. They imagine being ill with the flu (which leaves me in bed and miserable and hating it too), or an injury that hurt and impaired their movement but ultimately healed: a sprained joint, a broken bone. (All of which I’ve done also: counting the events where more than one bone broke at a time as one, I’ve broken bones more than ten times though I’m a little fuzzy on exactly how many — broken toes are hard to track.) They recall how miserable being ill or injured was and imagine having a disability (or several) as being ill or injured and thus miserable all the time.

We’re not. Even when depression is part of a constellation of symptoms or a side effect of meds or just something else to live with, we’re not. We’re just living, like everyone. When we hear “I’d rather be dead” it often sounds like “you should be dead.” And with good reason. People with disabilities are killed by those who should care for them. Parents kill their disabled children and the public’s sympathy is with the murderers. Caregivers in institutional facilities kill residents and few people care.

Amanda has written extensively about this at Ballastexistenz, and her Background, to the Foreground post is excellent. Not Dead Yet is dedicated to working against euthanasia and assisted suicide policies that make killing us legal, or at least fuzzy. Lauredhel’s post at Hoyden About Town about Christian Rossiter’s lawsuit to refuse nutrition hits most of the points I try to make when I talk about this issue. It’s despair and isolation that drive us to want to die. The neuro/physiotypical don’t see that part of it.

There are social feedback loops that reinforce these attitudes and keep us isolated. Ignorance and fear and hate go together. Neuro/physiotypical friends and relatives stop inviting us to things after a while. We’ve said we can’t come a number of times: we weren’t up to it for whatever reason that day, the venue wasn’t accessible, we didn’t have transportation. Eventually it becomes habit, justified by unhelpful concern. Whatever place isn’t accessible (it’s too much bother to plan for real utility). Oh, they probably won’t feel up to it (our lives are miseries anyway). Around it goes.

[1] Some of my stories can be found at my story blog, though be warned: nearly all of them involve themes of sex, violence, death, horror.

©2012 FWD/Forward. All Rights Reserved.
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International Transgender Day of Remembrance 2009

kaninchenzero — Fri, 20 Nov 2009 05:00:51 +0000

Today, 20 November 2009, marks the Eleventh Annual International Transgender Day of Remembrance. It’s the day that we set aside to commemorate the lives of people murdered due to trans hate and discrimination and prejudice. This year, we know of one hundred sixty-two persons who have been killed because they were trans* or were perceived by their killers as trans*. (Link to the T-DOR 2009 materials in English at the Transgender Day of Remembrance Website.) We don’t know — can’t know — the names of everyone who has been killed.

It doesn’t matter. Every murder hurts us. Every life stolen because we — everyone outside the cis binary, whether trans or intersex or nonbinary or any or all of those (I will be using trans* as a shorthand for this) — are seen as less than is precious and irreplaceable. We mourn for those who are gone. We grieve with the people who were closest to them. (Thanks to Chally for finding Queen Emily’s post from T-DOR 2008 on How to Mourn.)

I personally am angry. All over the world, in every society, we are there and we are dying. Because we are still seen as less than, as mistakes, as inherently deceptive, as the butt of every cruel man-in-a-dress joke, as freaks. Our genitals are viewed as substandard facsimiles at best, our sexualities are commodified and sold when they are considered at all. We are discriminated against in employment and housing, in immigration and criminal justice, in airplane travel, in language. Our medical needs are routinely denied coverage by insurance providers in the United States — even those needs which would be covered, if the insured were a cis person — and can be difficult to obtain even in countries which provide health care to their citizens. Worst of all we are dying because people feel entitled to kill us. Because we are who we are, there are people who feel we deserve to die.

So I am proudly out as a trans* woman with a disability here. (There are many of us who are trans* and disabled. Our bodies are freighted with meaning.) So I am not out in other parts of my life. In those parts I have to hope I pass and fear that I won’t. I want this space to be a safe space for everyone outside the cis binary. Not just for me though I need safe spaces too. It needs to be safe for the people who aren’t comfortable being out. That means no policing of gender identities. Just as no one has to prove their disability here, no one has to prove their gender or to have a gender at all.

Please help us remember those who are gone, and help us make our parts of the world safer for those who are still here.

©2012 FWD/Forward. All Rights Reserved.
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