Monthly Archives: June 2010

Recommended Reading, June 30

A stick figure of a girl dressed in a superhero costume, captioned 'ANXIETY GIRL! able to jump to the first conclusion in a single bound!' The girl is thinking 'oh, god ... these tights are too tight. i think i'm gonna die!!'
A stick figure of a girl dressed in a superhero costume, captioned 'ANXIETY GIRL! able to jump to the first conclusion in a single bound!' The girl is thinking 'oh, god ... these tights are too tight. i think i'm gonna die!!'

Anxiety Girl, by Natalie Dee. Seen at Learning Log.

Danger Room blog at Wired – [US] Military’s Mental Health Treatment Leader Stepping Down

The director of the military’s top center for post-traumatic stress disorder and traumatic brain injuries is resigning, after ongoing criticism of the facility’s inability to cope with the thousands of troops suffering from the “signature wounds” of the wars in Iraq and Afghanistan. Brig. Gen. Loree Sutton announced the decision to staffers at the Defense Centers of Excellence (DCoE) on Monday, ProPublica is reporting. The center is at the crux of the military’s massive efforts in bolstering both psychological and brain injury-related diagnostics, treatment, prevention and research. Sutton was instrumental in creating the DCoE in 2007, and has held the top job ever since. The timing of her departure, which has yet to be publicly announced, is another indication of the armed forces’ messy, mismanaged mental health program.

restructr! – Keanu Reeves Is More Awesome Than You Think

Paul also told me that Keanu once explained to him why he was getting so many action roles. He had injured himself at some point and had fused vertebrae in his upper back or neck, so when he turned his head, his shoulders and chest tended to follow, because of his limited flexibility. “It makes me look dynamic, rather than disabled” was his explanation.

The Tyee – Canada Short Changes Mental Health

“There is a fundamental structural problem with the Canadian health care system,” former Senator Michael Kirby told a conference on Health of the Homeless today. “Mental health and addiction represent roughly 35 per cent of the disease burden in Canada, yet these illnesses receive only about 5 per cent of the resources,” said Kirby, who now chairs the Mental Health Commission of Canada. Kirby argued that this structural problem costs Canadian taxpayers dearly, and diverts treatment from other health care.

Sunshine Coast Daily – [Australia’s Sunshine] Coast Gets Funs Shot In Arm for Mental Health

MENTAL health services on the Sunshine Coast have received a $1.5 million shot in the arm. Queensland Disability Services Minister Annastacia Palaszczuk said Queensland Health had identified the Sunshine Coast region as a priority area for mental health services. The funding will benefit two non-government organisations providing support to Coast residents recovering from mental illness.

Sydney Morning Herald – Call to Change Disability Bias of Migration Law

MICHELE NISINGIZWE breaks down when she speaks of her mother in Rwanda. The 28-year-old migrated to Australia with her sister seven years ago, fleeing genocide and rape. But the sisters, of mixed Hutu and Tutsi ethnicity, were unable to bring their mother because she had a disability. Gunshot wounds sustained in a civilian attack had maimed her legs. This week the federal government said it was overhauling migration laws that could refuse people on the grounds of a disability. Regulations caused a furore when they threatened to expel a German doctor, Bernhard Moeller, in 2008 because his son had Down syndrome. In the same year, a husband and wife working as renal nurses in Brisbane had to return to Britain because one of their four children had Down syndrome.

Recommended Reading for June 29, 2010

sasha_feather at access_fandom (DW): Institutionalized Access

So for disabled people, suddenly the world is a lot harder to navigate because it is not designed for people with disabilities. It is designed for the “default” or unmarked human. This is a practical concern but it also sucks because it is discrimination. But this does not have to be so!

We can institutionalize access and incorporate universal design into our lives and events even in small ways. Language, attitudes, blogging practices, choosing accessible venues, listening to people and prioritizing access.

Molly Hennessy-Fiske (Los Angeles Times): Suicide is called 12th casualty of BP oil spill [trigger warning for discussion of suicide]

Tracy Kruse, 41, noticed that her sturdy husband had started to lose weight and was having trouble sleeping. He usually spent at least $30,000 outfitting his two boats for what he had thought would be a bountiful summer guiding his loyal clientele to the best fishing the rich gulf waters had to offer, said brother Marc Kruse, 52, who works for a corporate manufacturer in Mobile, Ala.

Two weeks ago, Kruse went to work for BP, turning his 50- and 40-foot boats, the Rookie and the Rookie II, into what the oil giant calls Vessels of Opportunity. He was never given a day off.

Judy Foreman (Los Angeles Times): Understanding restless legs syndrome

In recent years, the neurological condition has been linked to increased hypertension, stroke, erectile dysfunction, higher death rates from kidney disease, possibly Parkinson’s disease and fibromyalgia, and perhaps other problems as well. RLS affects 12 million Americans, according to a National Institutes of Health website, though some researchers think the prevalence is higher and some, lower.

Sady at Tiger Beatdown: Dirty Girls and Bad Feminists: A Few Thoughts on “I Love Dick”

I mean: This is basically how every terrible thing in the history of humanity has started, the decision that there’s an Us and a Them and the former is good and the latter is bad. Doing it in the name of lofty principles doesn’t mean you’re not doing it; it just means that when the problems — the self-falsification, the repression, the insistence on ideological purity rather than self-examination or originality or thought — creep up on you, you’re less likely to notice them and more likely to rationalize them. Because your aims really and truly are good.

spastigirl at dot_gimp_snark (LJ): Are You Having a Laugh? No, Not Much

It’s a shock to realise people may well look at me as an unjustified user of resources because I don’t have a physical accommodation (wheelchair, cane, crutches, service dog) to take with me everywhere. I always used to think people would assume the truth, that my disability doesn’t show much, but obviously there are beady little eyes everywhere ready to file me away as Not a Real Gimp.

Wii Fit Making Exercise More Accessible?

A black box containing a Wii Fit Plus sits on top of a white box with grey and bright green letters containing a Wii Fit Balance Board.I read recently in an issue of Family Circle Magazine (DON’T JUDGE ME!) (There was a fried chicken recipe I wanted to try out!) that “Japanese research” (could they be any more vague and list any fewer resources?) indicates that using a Wii Fit burns just as many calories as doing moderate exercise. There was no resource listed, nothing. Just a blurb stating that there was some research going on in Japan telling us that the Wii Fit was good for us. I have read on random gaming and parenting boards that there is hubbub about the Wii Fit that it is exercise vs. still being “just a video game”…

Now, I don’t really care about calories as much (or at all) as I do having access to some kind of exercise or movement that I can do without having to leave my house and trek all the way up to the base, or pay for a pricey gym membership, or exhaust my silverware drawer trying to get there, or trying to get through a class of exercise that is of a safe level for my body. Sometimes I need to move. I’ve found our Wii Fit to be small chunks of movement that I can handle when I am ready for some, and unlike a yoga class, something I can stop quickly when I am out of resources. I could go on…but you get the idea. I still prefer a good swim when I have a good day, but we all know that our bodies do not always give us what we want…

Having a Wii Fit in my house has been something useful for me, and I acknowledge that there is quite a bit of privilege there as well. There are disabilities that don’t make the amount of movement required for the Wii Fit accessible at all. It isn’t affordable for everyone (and we had the console already when the balance board was released, but the board is not required for all the games), and the games aren’t released in all countries. Even on a good day I can not always use the board safely, and sometimes my old issues with eating disorders can’t handle some of the game details that include measuring your weight and abilities to balance…

But the Wii Fit has made exercise, and moderate amounts of movement, available to some people for whom it wouldn’t otherwise have been available and accessible.

What are your thoughts, gentle readers? Have any of you used the Wii Fit and been pleased with it, as I have? What are your major complaints with the idea that it is an accessible form of exercise/movement? Love it? Hate it?

Photo Credit: Keith Williamson

Recommended Reading, June 28

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

G20 Protest Disability-Related News Stories

Image description below

Photo by Hillary Lindsay for the Toronto Media Co-Op, used under a Creative Commons License.

Emomotimi Azorbo, a Deaf man, was arrested in Toronto for stepping off the sidewalk and being unable to hear the police’s demands that he get back on the sidewalk. The police would not allow his friend, who knew Sign, to community with him, and handcuffed Azorbo, which prevented him from communicating with anyone.

According to the Globe and Mail, the Canadian Hearing Society’s Gary Malkowski said the police failure to allow an interpreter who was not an officer to assist communication violates Canada’s Charter of Rights and Freedoms.

Ubyssey [University of British Columbia Student Newspaper]: Deaf man released on bail: Exclusive Photos of g20 arrest

“It was a great deal of misunderstanding from both sides,” he said. “[Azorbo] bumped into police…and the police starting yelling at them to get back, he didn’t understand. His friends were trying to tell the police that he was deaf, trying to explain the communication barrier.”

“[The police] were about to let him leave, but then he got into their faces, and then was tackled,” added Thibault. “I think he was just intimidated.”

Toronto Mobilize: Support Emomotimi!

The Spoke: Deaf Demonstrator Released on Bail [in PDF, Text only transcription]

Toronto Media Co-Op (Grassroots Media): An Accessible Movement

Disabled people were setting the pace of Friday’s anti-G20 march, says Andrew Mindscenthy.

Mindszenthy is a member of Disability Action Movement Now (DAMN), a cross-disability coalition that includes disabled people and people affected by ableism.

Globe and Mail (Mainstream Media): Deaf man arrested in G20 protest granted bail

Toronto Star (Mainstream Media): Deaf protester expected in court today

Key Quote: “Handcuffing a deaf person is like putting duct tape over a hearing person’s mouth,” he said. “It’s a violation of their human rights.”

The above links focus specifically on disability-related news stories. For grass-roots and up-to-the-minute report on the G20 protests, the Toronto Police State, the 4 a.m. arrests of social justice activists, etc:

Rabble’s Staff Blog [Independent Media]

Steve Paikin’s twitter feed [Journalist]

The Toronto Media Co-Op (part of the Dominion newsgroup) has up-to-the-minute updates [Grass-Roots Media] (Community Organizers thrown in Unmarked Police Vans en Route to Press Conference on Targeted Arrests)

Illegal Soul is bfp’s tumblr, where she is posting updates from protestors she knows in Toronto.

Sabotabby is posting updates from Toronto.

Upcoming Events

Disability News Asia: First Conference in New Zealand on Access Tourism

October 4 2010 has been set as the date for the first conference in New Zealand on Access Tourism.

The conference will look at various aspects of Access Tourism, including some of the following:

The current situation NZ and worldwide, website access and information best practice, government strategy, policy, and obligations, best practice in transport , accommodation, and attractions access, training for access in the tourism and hospitality sector, legal aspects, and quality rating for Access Tourism products in New Zealand.

Website: Access Tourism NZ 2010 Conference

Disability News Asia: 3rd International Universal Design Conference: Hamamatsu 2010

The 3rd International Conference for Universal Design in 2010 will be held in Hamamatsu City, Shizuoka Prefecture, Japan, for 5 days from 30th of October – 3rd of November 2010.

Petitions

United Kingdom: Against DWP Reforms for the genuinely sick and disabled

We believe that the constant vilification of sick and disabled claimants as work shy scroungers by the press has a great deal to do with increasing levels of harassment.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com

The Second Summer of the Sisterhood: Choosing How to Fight Your Own Demons

The cover from the book <em>The Second Summer of the Sisterhood</em> by Ann Brashares. It is lavender with darker printed names of various cities printed faintly in the background, with the title and author name in a green swirly font on the top and bottom respectively. A pair of blue jeans , rear view, takes of most of the rest of the cover, and they have random writing all over them, and an embroidered yellow and orange swirly sunshine on the left-hand pocket.Oh, Young Adult Lit you are my Bravo Foxtrot Foxtrot.

A while back I read and reviewed Ann Brashares’ The Sisterhood of the Traveling Pants here. I loved it, and proceeded to immediately read the sequel, The Second Summer of the Sisterhood, but neglected to write anything about it. I have come to you, dearest readers, hoping for your forgiveness, and to make up for such forgetfulness. I have recently checked the third book out of the local base library and can’t possibly read it or the other books in my “To Review for FWD” stack (YES! I really have one of those!) until I rectify this situation.

If you aren’t familiar with the series and are disinclined to read my previous post, which is just fine by me (for reals) here is a quick recap (you may skip ahead here): The Traveling Pants series is about four young women, Bridget (Bee), Carmen, Tibby, and Lena, who are best friends, and who describe themselves as so close that they forget where each of themselves ends and the other begins. They grew up together having been born all within the same seventeen days, each coming from different ethnic and economic backgrounds with different household situations (although they are all fairly securely middle-class, with at least two of the families being arguably very upper-middle, and the series is squarely hetero-normative), starting with their mothers all being best friends themselves. Their mothers drifted apart after the suicide of Bee’s mother following her long depression. The girls, however, remain close right up until their first summer apart when we first meet them, and Carmen comes into possession of the eponymous Pants at a second-hand store. The Pants help them through their first summer apart, when they learn how to be together even when apart, and that the word “friends” is stronger than many people give it credit for. They learn how to be strong for each other through the life shattering events that are part of the growing, aching, and changing from childhood into young adulthood, especially as young women.

It is amazingly poignant, as it gives us stories of four young women told from four young women’s perspectives, and that is what drew me to it initially. I have many criticisms to make of the book, and I am willing to make them and discuss them openly in comments. This book is from a cis, straight, perspective. Much of it passes the Bechdel test, as in, huge chunks of it go by passing with flying colors because it is about the parts of girls’ lives that involve shit that matters to girls/young women and women as they relate to the other women in their lives, and a lot of that, funnily enough, just doesn’t always revolve around men.

(All Together Now!)

The Second Summer of the Sisterhood returns us to these same young women, getting ready to go, once again on their separate ways, except that wasn’t the plan all along. In the beginning only Tibby had plans of going away to a summer film camp, and the other three girls were going to stay behind, getting summer jobs. But suddenly, Bee, dragging along some demons from her past, and new ones from the summer before, made an impulsive plan to go to Alabama to see her Grandmother.

It is Bee’s story that strikes at me the most. Bee, who during the last book was impulsive and active and defiant, who couldn’t sit still and had to run. Bee, who suddenly came home, and quit soccer — an activity which had been a huge part of her life since she was very young — and became quiet. Bee, who died her golden hair as dark as she could get it, and withdrew from everyone but the three other girls in the book who tried to give her the space to figure out who she needed to be at this time. Even then, we see that the impulsive and super-active, full-throttle life was Bee’s way of coping with her mother’s suicide. Bee had always thrown herself forward into life in hopes that she will outrun the sadness of that death, or so it seems to me, and each of her friends sometimes describe themselves as standing back and holding their breaths as Bee makes up her mind to go after something she wants, ready to be there and catch her, or pieces of her, when she gets it. Even Bee sometimes describes herself as running away from something by the end of the first book.

But Bridget has decided that she is going to Alabama to meed the grandmother that her father never allowed her to know — her mother’s mother. This flip of narrative interested me, notably because it is usually the mothers we hear about, distancing and holding their children from knowing their fathers’ families. This interested me, because here is a young woman telling her father that she has a right to know these people, that she has an agency outside of what he decided for her. Her father disagreed with how her grandmother wanted to handle Bridget’s mother’s depression, and he blames her in part for her death, and Bridget wants to meet her and decide for herself.

But Bridget is fighting her own depression.

[Spoilers Ahoy!]

A sexual encounter at the end of the first book has left Bridget reeling. And without my getting into the dynamics of whether or not this could be considered statutory rape or consensual teenage sex, Bridget has realized that she has to find out more about Marly, her mother, and this grandmother she hasn’t seen since she her mother died, in order to face that depression, before she engages in anymore activity that she isn’t quite ready for*.

So she decides, since no one recognizes the young woman depression has made her right now anyway, she goes to Alabama to meet Greta, her grandmother, and puts on a remarkable ruse of pretending to be a young girl looking for summer work, lying to Greta, and doing daily chores for the old woman. Through the summer she rediscovers her love of soccer, loses some weight (because weight and depression and blah blah blah!) that allows her to be able to put the magical Pants on once again, energizing her with the love of her friends, and gives her the strength to tell Greta the truth, which gives her the tools to realize that she doesn’t have to spiral into depression like her mother did…which was her greatest fear. That she would be helpless to follow in her mother’s footsteps.

Bridget’s depression is written in a way that I find strikes me in the heart. Once again, I have to read parts of this book in a room away from others because I get all teary-eyed. The building relationship between Bridget and Greta is important, we get to see two women, separated by an entire generation, with a huge gap stolen by devastating depression, yet brought back together by the aftermath of that depression and a depression unique to each remaining woman. I love the way that Brashares takes the stories of four young women and weaves other women into them. And once in awhile she writes disability in a way that doesn’t break my heart. Or, it breaks my heart in a good way.

If you have read my previous post, and remember the story line about Tibby and Bailey, I have a quick note there.

Tibby goes to film camp, and makes a string of poor decisions in an effort to try to be clever and popular with the kids she thinks are important or cool. In the end, she winds up making a film about Bailey, which she gives to Bailey’s parents, but which also has the benefit of teaching her, again, a Very Special Lesson about people, continuing the idea that Bailey was always a plot device, and never a character all along. An event on the Pants, and not a person. Bailey becomes a personality trait about Tibby, and was never meant to become a person, so please feel free to discuss this as well.

Since I spent so much time discussing Bailey and Tibby in the last post I wanted to focus on Bridget in this post, although I feel that there will be more Bee to come.

*Bridget was very young and emotionally traumatized in the first book by the death of her mother. I read her as aggressively and almost destructively seeking the attention of Eric, the coach at her camp, and it was all very messy and complicated and I didn’t read any blame to be placed on any one person. That being said, Eric, as the older person, had the responsibility to stop the relationship if it was unwanted instead of allowing it to continue, being that Bridget was fifteen at the time of the encounter and he was eighteen. Some aspects of the relationship between Bridget and Eric make me uncomfortable, and some read to me as simply something I advocate for: Teenagers being allowed to discover sex on their own terms. Age of consent laws are awkward for teenagers, where the magic number between legal and illegal are literally overnight. I also wonder about the fallout of writing a character like Bridget seeking and having a sexual encounter and having such severe depression. It is just a thought.

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

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

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

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

[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

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