Yearly Archives: 2010

Dear Imprudence: The Questions You Don’t Get To Ask

27 June, 2010Dear Imprudence, intersectionality, life changes, mental health, militaryfamily, invisible disability, Iraq war, Korean War, military, Miss Manners, PTSD, social treatment, things people say, war, war injuriesOuyang Dan

A concerned family member writes to Miss Manners:

Dear Miss Manners:

My brother served in Iraq a couple of years ago. He suffers from PTSD and was wounded. The physical wound is not one you can see, but people (family especially) will still ask him what it was like to fight in the war and even go so far as to ask if he killed anyone.

It never ceases to amaze me the way that people feel entitled to information about other people. They love to ask questions about your disability, and when a person happens to be a veteran and has seen combat, one of the first questions that comes up, almost without fail (unless that inquiring person happens to be a veteran or the family member/close friend of a veteran), is whether or not that particular veteran has killed some body.

Have you ever killed anyone?

I just can not fathom having to live with the reality of having lived through that burden, let alone having to deal w/ having to relive any of the emotions attached to that each time a thoughtless person asks “Have you ever killed anyone?”.

The letter writer wants to avoid having to stay away from a family function to keep zir brother safe from such carelessness from other family members, and honestly that breaks my heart. A PWD should not have to completely cut themselves off from friends, family, and other outside contacts to avoid triggering situations, but the reality is, this is overwhelmingly the way that it usually works.

I know for a fact that there are many veterans living in isolation because of PTSD, and yes, several of them are women, because of people who aren’t veterans, who can’t grasp what that must have been like (and not even all of us, as veterans can know what that is like), who can’t abstain from getting too nosy and triggering their PTSD. Why can’t we just have the same conversations as everyone else? Not everything in our lives revolves around our disabilities and our experiences in The Sandbox. Not everything is about the worst thing that has ever happened to us.

I like the way Miss Manners answers this letter:

Can you do this without creating consternation and even more curiosity about his condition?

She cautions the letter writer to caution the family to avoid the topic of war without creating a more awkward situation that might cause the family to avoid zir brother as if he is a ticking time bomb.

[He] will probably tell us about the war eventually, but right now it’s his least favorite topic, and I know he’d appreciate our staying off the subject.

This is the perfect way to describe this.

This is the 60th anniversary of the Korean War, the Forgotten War, many call it. My grandfather is a proud veteran and a Purple Heart recipient. He didn’t like to talk about the war with us, even when I was a shining eyed, curious young girl, who was almost never denied anything she asked of her grandfather. It was painful for him to remember, and the only time I ever saw him reminisce was when we traveled to Des Moines for his unit’s reunion many years ago.

But after I joined the Navy he sent me a letter at my A-School sharing a moment of understanding for what I was doing, and later, when my partner and I PSC-ed to Korea, he sat and talked to us for hours about what he remembered of the country. He told us harsh and sometimes beautiful stories of his memories. He told his of his marching from Pusan all the way to far North, of being picked up by Navy ships, transported back to Pusan and doing it again, after salvaging boots from the dead to cover their own bleeding feet. He tells it better, and I hope to get it recorded the next time I see him. But he told it to us in his own time, when it didn’t hurt him anymore.

I remember when The Kid’s Tae Kwon Do instructor told us of his memory of being a child during the war. A child in her class said that he was too young to do something or another well. The Master told us a story, of being eight, and of being held by his mother in a drainage tunnel and being told to not make a sound while North Korean soldiers ran over head. He was able to barely breathe, soundlessly, and stand against the side, like you see in movies, as they flashed their lights looking for people. He shared that story with us freely, and I remember the look on his face, as if he could still feel the chills of fear, like he was back there for a moment, but stronger now, sixty years later.

We have no right to ask them to regale us with the details of the horrible things they had to do to get by, to make a living for their families, to live, all because they were told it was the right thing to do. Or because they had to survive. They had a moment to think, but they have a lifetime to live with that decision.

People who live through wars will tell their stories when they are ready, because the pain will give them a moment of release, it will subside for a moment, or forget to pound them with the aggressive flashback or terror.

We, as people who have never lived through that, have no right to inflict that upon them.

Electronic Medical Records

27 June, 2010policyabby jean

Ezra Klein, a columnist in the Washington Post who focuses on United States health policy, recently wrote a post about electronic medical records, arguing that it is absurd that we have not yet adopted their use:

The fact that it’s 2010 and we’re having a conversation about how to move records from paper to computers is evidence of how screwed up the American health-care system is. In part, you’re dealing with the fractured incentives in the system: It’s good for patients and good for insurers if doctor’s offices spend money setting up computer systems, but it’s not necessarily going to make doctors any money, and the doctors themselves are frequently older and don’t want to learn a new system. That’s one reason why systems where the insurer and the provider are the same — think Veteran’s Affairs or Kaiser Permanente — tend to be ahead of the curve on electronic medical records.

But even if the economic analysis makes you sympathetic, the end result is still absurd. Imagine walking into a bank where clerks scrawled all your information in a giant ledger book. You’d run out and tweet all your friends about this hilarious bank from the 18th century. But we actually let people do this with our medical records, and then some of us die or have serious problems because our records get lost or our doctor’s handwriting is illegible.

I have a few different perspectives on medical records. First, I’ve generated a significant number of my own records and have been annoyed and frustrated many times by the lack of coordination in the care I’ve received and the seemingly endless need to provide the same information over and over again. It does seem anachronistic to me to rely almost entirely on handwritten documents to track care.

For another perspective, I often gather, review and interpret the records of others to support their applications for disability benefits. Benefits programs have definitions of “disability” that require complicated analysis and review of a person’s entire medical record to pick out enough information to decide if they meet whatever the disability standard is for that program. And for the low-income folks I work with, who have choppy and intermittent access to health care that is usually spread out among a staggering number of disconnected health care providers, the task of coercing and cajoling the various doctors and medical facilities to copy the handwritten notes in a medical file is often overwhelming and sometimes Sisyphean.

If people get past the initial barrier of gathering the records, there is often an issue of actually figuring out what the damn things say. I know it’s cliche to joke about doctor’s handwriting, but in my experience, those jokes are founded in page after page after page of incomprehensible scrawl with a seemingly infinite series of baffling abbreviations and large sections that we sometimes cannot decipher even after 6 of us (including a doctor and a nurse!) spend an hour trying to make it out. I create my own indexes and chronologies and piece together when each medication started and stopped and when a diagnosis was made.

Sometimes, our clients have gotten medical services through the Veteran’s Administration (VA). The VA mails me a CD-ROM that loads the entire medical file in chronological order in typed PDF format, entirely searchable. (With the proper HIPAA-compliant releases, of course, you can’t just get people’s records from the VA.) Periodically, around every 6 months, the system automatically generates a list of medications and diagnoses in the records. The CD has the medical imaging on it, so I can get one of my experts to look at it. It is such a big difference that we sometimes squabble over the cases with VA records because they’re so much easier to deal with.

On the other hand, there are obvious and significant privacy concerns. I do not want it to be easy for an employer, law enforcement, insurance companies, or really any person or entity to whom I haven’t given direct and explicit permission, to get hold of my medical records or to be able to send them in an email in the blink of an eye. And given the existing level of ableism and discrimination, that is certainly an issue with life and death consequences for some people with disabilities. I do not know whether it’s possible to safeguard medical information to the necessary level while still allowing the accessibility and coordination that make electronic medical records so appealing.

Interpreters and Emergency Rooms

26 June, 2010accessibility, activism, disability activism, intersectionality, medical practice, raceabby jean

I recently came across a news article about a lawsuit by several d/Deaf or hard of hearing people who were denied interpreter services in emergency rooms. It sounds both infuriating and terrifying:

One deaf hospital patient in Jacksonville Beach said she was given a stuffed monkey instead of the sign-language interpreter she requested for hours. Feeling isolated, she finally asked nurses for something to hold.

Another said she thought she was being denied medical care because there was no interpreter to explain why they needed her to wait in a hallway at Baptist Medical Center South. She later learned hospital staff lost a list of sign-language interpreters her mother had given them.

A third woman couldn’t hear when emergency workers at Baptist Medical Center downtown called her name.

The three women are among seven hearing-impaired emergency-room patients suing Baptist Health Systems for violating the Americans With Disabilities Act by failing to provide qualified sign-language interpreters. The lawsuit was filed in federal court last week by Jacksonville Area Legal Aid. Legal Aid attorney Sharon Caserta, who works with hearing-impaired clients, said the pattern of complaints at Baptist facilities from 2006 to 2009 indicated a breakdown in services that denied deaf patients full access to care.

She said the act requires interpreters or effective auxiliary aids to be provided if needed for communication with medical professionals. The U.S. Justice Department has interpreted the law to mean a one- to two-hour response time is reasonable after an interpreter has been requested, Caserta said.

In Northeast Florida, she said, that shouldn’t be an issue because of a half-dozen organizations that provide interpretive services and the proximity of the Florida School for the Deaf and the Blind in St. Augustine. But Caserta said her clients never got interpreters and, if they didn’t have friends or family with them, had to fend for themselves at Baptist facilities.

Many are now scared to return to Baptist or any emergency room, she said.

These problems are not limited to that hospital, or even to the United States. According to one survey in the UK, “70% of deaf respondents reported being unable to have access to an interpreter when they attended an accident and emergency department.”

These incidents would be bad enough if their impact was limited to the incident itself. Being denied the right to communicate in an emergency situation is beyond unacceptable. It denies people the right to understand what’s happening to them. It denies them the ability to consent to treatment or make any decisions or have any agency at all in their treatment.

Even worse, these incidents undermine the reliability and usefulness of the health system itself. As the article above mentions, many of the plaintiffs “are now scared to return to … any emergency room.” This is echoed by the UK survey, which found that “communicating with health care professionals was such a struggle that 28% of deaf people responding to one survey were left so confused and dissatisfied with their inadequate GP health care that they avoided seeking medical help.” These people have learned that the health care system is unwilling to communicate with them in their time of urgent need. Is unwilling to take the time or make the effort to treat them as autonomous people participating in their own care.

In a demonstration of intersectionality, the facilities and areas in the US that have the best policies and practices about providing sign interpreters to d/Deaf and hard of hearing people are those with good policies for accommodating people with limited English speaking proficiency. (I would expect the same holds true for non-US locations which accommodate folks who don’t speak the primary language.) These places have created an infrastructure where interpreters are available and staff are trained on how to access them, and they’ve prioritized communication access in their facilities.

The Inner Critic

25 June, 2010art, bad advice, creative work, mental healthart, creative work, creative writing, depression, inner critic, mental health, mental illness, social treatmentAnnaham

[Warning for possibly triggering content regarding mental health, specifically depression.]

I’ve been reading a fair number of how-to creativity books (yeah, I know, creativity is not something you can “learn” from a book) recently in preparation for a long-term project, and one thing I have noticed about some of these books–and a lot of the “advice” floating around out there about creativity–is the notion of the “inner critic.” The inner critic, according to some Professional Creative Types, is the voice that tells you that you are not creative, that you can’t write, or draw, or paint, or accomplish whatever creative project you want to. The inner critic is supposed to stand in for everyone who’s told you that you are a crappy artist, that your creative pursuits aren’t good enough, and all of that fun stuff that apparently wasn’t there when you were a kid. And, in the course of becoming truly creative, you are supposed to silence your inner critic.

This got me thinking, however: What if that critic was there when you were a kid? What if the inner critic is, well, part of you, and you cannot “just silence” that part?

One thing that I really don’t talk about publicly (on the internet or off) is my history of major depression. There are many reasons as to why, and I think that those might best be saved for another post. However, there is something that really bugs me about the “inner critic” model of creativity: it does not take depression, anxiety, or other mental health conditions into account. What if that voice in your head has been there for a while, and is an active part of your mental health issue? It’s not so easy to turn off that voice that tells you that you suck, or that your art or writing is a bunch of crap, or that you will never amount to anything when that voice is there because of a mental health condition.

There’s another assumption in writings about the importance of “turning off” the inner critic, which is that all children have a magical reserve of resilience and that is why they are so creative. These children simply don’t care what anyone else thinks, and the Creative Adult must recapture that sense of adventure by silencing the inner critic! It sounds so easy! But what of the depressed child, or the child with mental health issues? As someone who had depression issues as a kid — and still does — I question the supposedly “universal” applicability of this whole inner critic business, the assumption that it can be turned off like a damn light switch, after which we will all Recover Our Childlike Capacity For Creativity, or something.

I remember having my own Inner Critic as a kid, and it was not fun. Certainly, I did have years where I had that sense of Childlike Creativity and Wonder, but those were also interlaced by a voice in the back of my mind that would tell me awful things. And it never left, after a while. It would hiss: You do not belong. You are weak. Your bum leg is punishment for something, and you sure as hell aren’t going to “make up for it” with your stupid cartoons, give me a break! You think you’re going to be popular because of your cartoons? Because of your writing? Please. You are worthless, and also none of the other kids like you. Your art is just a hobby, nothing more.

Then, once the depression came on the scene, those little hissings became, well, much bigger. They’d been there when I was a kid, no doubt, but with major depression, they stuck in my brain like a particularly awful tape loop that just couldn’t be turned off. Things with my depression are much better now — as they have been for a few years — but I am always, always on the alert in case it comes back full-force. My depression not totally gone (nor do I expect it to be), but I manage it with care. And the “inner critic” that artsy self-help types slam? She’s still there, and I think she will be there permanently. The trick, for me, is learning to live with her instead of assuming that silencing her is an easy step.

Quick Hit: The Horrors of Solitary Confinement

25 June, 2010age, autonomy, justice, mental health, resistanceabby jean

When I first saw this post on the ACLU’s blog about solitary confinement for juvenile girls in criminal detention, I was so horrified that I opened it in a tab and then couldn’t look at it again for several days. When I read through the entire post, I cried. I believe that when the United States takes control of a person, whether in criminal or immigration detention, they take on an obligation to care for that person, or at least not put them in mortal danger. And that is simply not happening. On the contrary, the solitary confinement policies seem to target girls with existing trauma and/or mental health histories for further isolation and victimization.

[Trigger warnings for sexual assault and abuse based on disability.]

In June 2008, the ACLU filed a class action lawsuit challenging inhumane practices at the Brownwood State School, a youth prison in central Texas. Girls at Brownwood are regularly placed in punitive solitary confinement in oppressively cold, concrete cells, that are empty except for a metal slab intended to be used as a bed. Solitary confinement is imposed for minor misbehavior, for self-harm or for expressing a desire to commit self-harm, and can be brief or can last for days, weeks and even months. It’s hard to imagine a more destructive reaction to a child in crisis, but it’s the norm. Unfortunately, these practices are not limited to Brownwood, or Texas, for that matter.

There are currently more than 14,000 girls incarcerated in the United States, a number that has been rapidly increasing in recent decades. Most of these girls are arrested for minor, nonviolent offenses and probation violations. Locked up under the guise of rehabilitation, girls nationwide — the vast majority of whom have been sexually/physically abused — are subjected to punitive solitary confinement, routine strip searches, and other forms of abuse. Meanwhile, they are denied the essential mental health care, education, and social services they need. Far from helping girls cope with the trauma they have suffered, youth prisons’ use of solitary confinement only retraumatizes them and further impedes their rehabilitation.

This is abundantly clear in a recent collection of testimonies from girls imprisoned in Texas juvenile institutions printed by Harper’s magazine this week. On newsstands today, the May 2010 issue features excerpts from ACLU interviews with incarcerated teenage girls. A few noteworthy excerpts include a girl who states that her crying is treated as “problem behavior,” another who was locked in a solitary confinement cell surrounded by her own vomit for over 24 hours, and perhaps even more disturbing, the following testimony from a girl in solitary confinement:

“A staff [member] gave me a pill, and he told me he was going to take me to get my meds. We ended up in this dirty room. It had pipes, buckets—it was dusty, it was nasty. I was like, I want to go to sleep, and he was like, You’re not leaving until we have sex. I didn’t know what to do. I didn’t know to scream, I didn’t know to do none of that stuff. I told him I wasn’t going to lie on that dirty floor, and he was like, Well, just bend over, and so—I didn’t know what he was going to do to me. I don’t know if he could’ve killed me and it would’ve been on the news: We just found a dead teenager at TYC and nobody knows what happened.

— 17-year-old, Marlin Orientation and Assessment Unit

Crowdsourcing: Graphic novels! edition

24 June, 2010art, books, creative work, media and pop culture, metaart, biography, comics, creative work, readingAnnaham

Here’s the scoop: Despite the fact that I am sort of a cartoonist and “into” graphic art, I am, sadly, not totally on the up-and-up when it comes to comics and graphic novels! So, I need recommendations from you fine FWD commenters for a project that I will be starting on rather soon. I am mostly looking for autobiographical comic/graphic novels, comics/graphic novels having to do with illness or disability, race, and/or gender and sexuality (I prefer non-fiction for these categories), and comics/graphic novels that cover awkward situations in childhood, adolescence, or young adulthood (fictional or not). Also, how-to books (such as Eisner’s Comics and Sequential Art, which I already own and have dog-earred to infinity) are also welcome as suggestions, as I will definitely need inspiration.

Here’s a list of stuff I already have that is in one or more of the above categories: One! Hundred! Demons! (Barry, 2002); Fun Home (Bechdel, 2006); Funny Misshapen Body (Brown, 2002); The Spiral Cage (Davison, 1992); Cancer Made Me a Shallower Person (Engelberg, 2008); Jokes and the Unconscious (Gottleib and DiMassa, 2006) Stitches (Small, 2009), American Born Chinese (Yang, 2006) [thank you to my fellow blogger Anna for reminding me of this one].

PLEASE, SUGGEST AWAY!

[Cross-posted to ham blog in a slightly different form]

Damn Y’all White Wolf

23 June, 2010accessibility, creative work, i'm right here, intersectionality, language, othering, representations, social attitudesableism, exclusion, media and pop culture, problematic attitudes, social treatmentkaninchenzero

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 dumbness[1. Hi there, dumb means does not speak! I have not missed you.] 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.

Quick Hit: The Relationship Between Disability and Poverty, Part 1,293,495,594 in a continuing series

23 June, 2010blaming, class issues, intersectionality, policy, povertyabby jean

Did you know that being poor puts people at greater risk for disability? And that people with disabilities are more likely to be poor? And that there’s a very strong relationship between poverty and disability, the worst kind of vicious circle? Well, you probably do, especially because we talk about it a lot here, but here’s another study confirming that, from Wayne State University (bolding mine):

Dr. Bowen and Dr. Gonzalez said the study suggests that early socioeconomic conditions play a role in a person’s risk for disability that persists throughout the course of their life.

With much of the available literature on disability focused on the role of mid-life diseases, Dr. Bowen and Dr. Gonzalez took a unique life-course approach to the topic. “This study set out to determine if early life conditions contribute to the risk for developing a disability, and if so, what those risk factors are,” Dr. Gonzalez said.

The study utilized data from the Health and Retirement Study, a nationally representative study that followed more than 18,000 Americans 51 and older over the course of eight years. Using generalized linear latent and mixed-model commands for their statistical analysis, they examined the early-life parameters of parental education ranging from zero to 17 years, as well as the father’s occupation when the respondent was 16 years old. They factored in respondents’ social mobility — education, income and wealth — and health behaviors like smoking, drinking, exercising and body weight, throughout their lives, examining whether these factors mediated the effect of early life conditions. Analyses adjusted for the predisposition for certain forms of disability caused by characteristics such as age, gender, ethnicity and disease, and tracked the changes from baseline measurements over the course of the study.

Dr. Bowen and Dr. Gonzalez said the study suggests that early socioeconomic conditions play a role in a person’s risk for disability that persists throughout the course of their life.

“Our research strengthens the argument that poor conditions during childhood can put you on a path of heightened risk for health problems,” said Dr. Bowen, now a patient-safety research fellow at James A. Haley Veterans Hospital in Tampa, Fla. “This isn’t to say that people who grow up with certain socioeconomic risk factors are going to be disabled, but it does provide evidence they will be at a disadvantage. This is most likely due to the lowered access to good nutrition and to important health information characteristic of people living in poverty.”

(Note: I can’t say I care for the implication that this is an education issue, which implies that it’s caused by volitional choices of people in poverty. I think it’s much more accurate to look at the constellation of socioeconomic factors which are strong determinants of health outcomes – stables and habitable affordable housing, financial and locational access to nutrition, and health care access – all of which are systemic issues, rather than individual actions. But the overall conclusions are, well, exactly what we already knew.)

FWD/Forward

FWD (feminists with disabilities) for a way forward