All posts by abby jean

Quick Hit: In US, Women Hit Hardest by Medical Debt

From a post at Change.org:

According to a study (pdf) by the Commonwealth Fund, in 2007, 33 percent of working-age women, compared to 25 percent of men, faced medical bills that left them unable to pay for food, rent or heat; caused them to take out a mortgage on their home or take on credit card debt; or used up all their savings. Economists can’t agree on the precise number, but medical expenses account for somewhere between one third and two thirds of bankruptcies in the U.S. The damage isn’t just financial — once the debt is acquired, people are less likely to seek continued care.

This is a US only study, and is influenced in large part by the health care policies and costs here in the US, but I would not be surprised to find that whatever medical costs exist in a country fall disproportionately hard on women with disabilities.

Recommended Reading for June 21, 2010

A man in a hand-pedaled wheelchair holds hands with a standing woman below a signpost saying "John O'Groats"
A man in a hand-pedaled wheelchair holds hands with a standing woman below a signpost saying "John O'Groats"

Brine and Kath traveled from Land’s End, England, at the very southern tip of the UK, to John O’Groats, at the very northern tip of Scotland, the two settlements in Britain that are furthest apart, by hand-pedaled wheelchair and bike, arriving in John O’Groats on the summer solstice.

A Voice For Neli [this site is by the mother of a young black man with autism who was recently arrested and harassed in Stafford, Virginia, primarily due to his race and disability status]

My son was traumatized.  He has since been transferred to a mental hospital to receive treatment.  I have placed a link to the story below for the world to see.  How very sensational and yet sinister at the same time.  What is so suspicious about a young man sitting under a tree at the library.  The library is where my son goes quite frequently because there is a teen room there.  What made him suspicious?  Was it because he is a young black male?  Possible gun?  Why was the assumption made that he had a gun when there was no visible gun seen? Again was it because he was a young black man?  These assumptions are what catapulted the events of that day and has turned our family’s life completely upside down.

Bad Cripple – Conjoined Twins, Disability and Ethics

Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger’s book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger’s book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics.

Astrid’s Journal – On Disability and Suffering

Disability is not a tragedy. Both of these framings assume that. Someone can be suffering and have a disability, but that doesn’t necessarily mean that the person is suffering because of the disability. (Correlation is not causation!) This immediately reminded me of the first time I fought this terminology, back in 2007. My support worker wrote into my care plan that I suffer from an autism spectrum disorder. I asked her to correct it to say that I have an ASD, which she at first refused. We got into a pretty lengthy argument, in which she used all kinds of ableist misconceptions about the suffering of people with autism, until she gave in and changed the wording. Most of these misconceptions are rooted in the medical model of disability. That is, they assume disability to be an inherently bad affliction, and of course from there conclude that disability is something someone suffers from. Here are a few examples of arguments people use to base the idea that one suffers from a disability, upon…

After Gadget – Lyme Awareness Month, Part I

The next three After Gadget blogs will specifically address Lyme awareness from the service dog perspective:

  • How Lyme can affect your dog, and what you need to know about it (that your vet might not).
  • How Lyme can affect you, and what you need to know about it (that your doctor might not).
  • How Lyme transformed my experience specifically as a service dog partner.

Note: Since this blog series focuses on awareness, I’m honing in on the issues that I think are most important for you to be aware of. My goal is to prevent more cases of Lyme — especially chronic or untreated Lyme — in dogs and people. So, I’m going to skip a lot of general information. For example, telling you the name of the strange organism that causes this disease will probably not be what impels you to rethink the limp that comes and goes in your dog, or that frustrating “flakiness” of your sister-in-law. It won’t change your mind about whether you are taking adequate precautions against tick-borne disease (TBD). On the other hand, I hope this series will.

Leaving Evidence – Creating Collective Access

What is collective access?  Collective Access is access that we intentionally create together, instead of individually. Most of the time, access is placed on the individual who needs it.  It is up to you to figure out your own access, or sometimes, up to you and your care giver, personal attendant (PA) or random friend.  Access is rarely weaved into a collective commitment and way of being; it is isolated and relegated to an after thought (much like disabled people). Access is complex.  it is more than just having a ramp or getting disabled folks/crips into the meeting.  Access is a constant process that doesn’t stop.  It is hard and even when you have help, it can be impossible to figure out alone.

USA Today [so take it with a grain of salt!] – World Cup matches may boost your mental health

Scientists have shown that fans who feel personally invested in a team or, better yet, who attend games and cheer along with like-minded fans, reap the mental health benefits that come from a feeling of social connectedness. “The main thing that people achieve via sports fanship is a sense of belongingness, or connectedness, with others,” said Edward Hirt, a professor of psychological and brain sciences at Indiana University. “Sharing a common allegiance with others bonds people together in a special way. We can relate to others who share fanship with our team and feel a camaraderie with them that transcends ourselves.”

Quick Hit: Discussion and Writing Group for Women of Color Living with Disabilities in Seattle, US

Via a Facebook friend:

~~~Discussion and Writing Group for Women of Color Living with Disabilities ~~~

We are two women of color* living with disabling chronic illness. We want to connect with others women of color who are living with disabilities in the greater Seattle area to talk and write about our experiences.

Being women and being people of color are only two aspects of our complex identities and we are excited to discover the parallels and diversity of our experiences. We welcome women of color of any:

-age
-sexual orientation or gender expression
-intellectual, mental or physical condition or illness that is disabling/significantly impacts your life
-race or mixed race/heritage, ethnicity, immigration status or nationality
-religion or spiritual practice or lack thereof

We hope to have our first meeting in June. If you are interested, contact us and introduce yourself. Also, let us know any needs you have regarding a meeting location. We’ll do our best to find a space accessible to everyone.

We can’t wait to meet you! Please forward to others you think might be interested.

Please contact us at: colorsofability@gmail.com

*Person of color is a term used in North America to describe a person whose identifies or is identified as non-white.

Avoidance

Building on what Chally talked about in her post about doing fine, I wanted to discuss some of the disability aspects of my recent semi-absence. Sometimes I feel like thinking about, reading about, writing about, arguing about, disability issues can become overwhelming for me. I feel that there are so many problems – ableist policies and laws and governments and businesses and people and attitudes and media portrayals and interactions and opinions and splainers. And a horrifyingly large number of instances of people with disabilities being abused and battered and humiliated and ignored and erased and dismissed. Each of those things seems like an immovable stone that fit together to form a wall that is beyond insurmountable.

Even thinking about everything that’s overwhelming feels overwhelming. (And this, of course, is part of the effect of the kyriarchy – to be so overwhelming and monolithic that it forces conformity, punishes people for differences like being a PWD, and places immense pressure on them to conform as much as possible to the norm.)

So when this happens, I notice myself avoiding disability related topics. I keep posts on disability issues unread until they start building up in Google Reader. I somehow don’t get around to reading that article or book on disability activism I had bookmarked. Someone I’m around in a casual setting says the R word and I let it go by. I pass as much as possible for TAB and neurotypical – even to myself. I just ignore disability – in general and mine specifically – as much as possible.

I noticed that my avoidance started right around the time I started working on a work project related to domestic violence. Working in that area always makes me aware of how many people, predominately women, are subjected to horrifying abuse on a daily basis. In the past, I’ve had the same kind of overwhelmed/avoidance response to feminist issues, when it feels that the patriarchal structure is too entrenched and too powerful to fight.

In other words, feeling vulnerable about domestic violence and sexual assault makes me feel like I cannot risk being vulnerable about disability, so I try as hard as possible to ignore it. I know that I am doing this to protect myself. But I do not like that protecting myself means ignoring disability issues or feminism. That protecting myself means, to an extent, ignoring part of who I am. Not just in the way I present myself to the world, but even in how I think about myself in the privacy of my own head.

That makes me angry. It makes me angry that retreating into my shell is coping mechanism brought on by the infinitely-headed hydra of ableism and sexism. It makes me angry that a necessary reaction to the frustration of engaging in disability activism is to take a break from that activism and to momentarily stop identifying as a PWD. (Or as a DV survivor. Or as whatever else is making me a target for kyriarchical oppression.) Basically, I get angry that the kyriarchy works, that even my efforts to stop being hurt by it are intrinsically shaped by it. That my life is inherently a response to it. That I cannot seem to exist outside of it.

Fucking kyriarchy.

Why My Disability Makes Me a Better Employee

As people may have noticed, I’ve been a bit quiet lately, mainly due to being totally snowed in and overwhelmed at work. I’ve had a major project with a hard deadline and have been devoting nearly every waking moment to either working about it or just worrying about it. That worry and constant fretting is directly related to some of my anxiety issues – it’s a worry I feel both mentally and physically, with tensed muscles and clenched stomach and jitters. And I’m convinced that anxiety helps make me a better employee and better at my job.

I am a lawyer and my major project was a hearing with an administrative law judge to determine whether one of my clients will be considered disabled by the Social Security Administration and thus eligible for cash benefits and medical coverage. Our office had been working on this case since his initial application for benefits in 2006 and in the interim, I’d seen him struggle to avoid homelessness while his income disappeared and his medical condition deteriorated without access to effective medical treatment. So this case was an extremely big deal and the outcome would make an enormous difference in the course of his life from this point.

No pressure, right? And it didn’t help that it was an extremely complicated case involving about 15 years of medical records from 10 different medical providers and facilities about three or four distinguishable medical conditions. And that, although his disabilities have extremely serious effects, they were the kind of disabilities that Social Security usually has a hard time understanding and so tend to lead to findings that the individual is not disabled. So – a major case with a lot of difficult work for an extremely important outcome. And the short time between when we were notified of the hearing date and the actual date meant that to succeed, I would need to spend nearly every waking minute in between working on the case.

Which is when my anxiety kicked into high gear – and actually made that possible. I spent all my time in the office reviewing records, teaching myself relevant medical terms and context, and coming up with an overarching narrative to frame the disabilities. But when I would close the file and go home at the end of the day, my anxiety would not let me stop thinking about it. While I was driving, making dinner, in the shower, at the gym, my mind was constantly spinning, either worrying over some aspect of the case or making a list of my next steps when I got back to work. I was not only waking up in the middle of the night to spend some time thinking about the case while staring at the ceiling, I was dreaming about it.

When I’m that anxious about a specific topic or issue, I think of my brain kind of like a rock polisher – it takes a dull idea or problem, with jagged edges, and rolls it over and over and over (and over) again until the edges are worn down and the surface is polished to a brilliant finish that can be appreciated by even the most casual observer. But the end product wouldn’t be the same without the constant, unceasing motion and effort. If the motion, the tumbling, stopped for stretches of time, the end result would not be as smooth, as shiny, as easily appreciated.

My anxiety makes it impossible for me to slack off while working on such a major project. Even when I try – by watching tv, reading a book, talking to my cat – there’s a portion of my brain that keeps spinning and spinning away, and my whole body is ordering me to pay attention to that part of my brain. Yoga wouldn’t help, hot baths didn’t work, even a hard session on the treadmill just made me more tense. The only thing that would reduce the anxiety was making some progress on the case.

I think that drive makes me a better employee and results in better and more persuasive case work. I certainly know that I would love to take breaks and put work out of my mind and to not dream about it every night. But I don’t think the end product would be as good if I were able to do that. So my employer never needs to worry about me blowing off a case or putting less that my full effort into it, because of the anxiety that will not permit me to do anything less.

(By the way, we won the case and my client will get his benefits. Yay!)

There are definitely other aspects of my disability that either aren’t relevant to or actually make it more difficult to do my work, and I don’t want to imply that everyone who is a lawyer should have anxiety to make them more effective. But this particular aspect of my disability definitely enhances my ability to focus and concentrate and motivates me to put in lots of time and thought, which is an advantage for my job.

Are there aspects of your disability that enhance ro amplify your abilities in certain areas?

Recommended Reading for June 3, 2010

Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."
Two totally adorable golden lab puppies with floppy ears, wearing blue cotton bandanas with the tag "Service Dogs."

Service puppies in training!!

Miami Herald – Embedded therapists protect National Guard members’ mental health

Roger Duke is a Vietnam veteran, a retired Marine lieutenant colonel and a licensed marriage and family therapist. Since 2006, he’s spent at least one weekend a month embedded with a California National Guard unit. Duke, 57, wasn’t deployed with the unit’s soldiers in Iraq and Kosovo, but he’s a trusted face whom the soldiers confide in before and after their deployments. “Some of the best conversations I have with them are at one in the morning in a Humvee during a training exercise,” said Duke, who’s part of a California program designed to help returning Guard and Reserve members by attaching mental health counselors to their units.

Threadbared – Hanky Pancreas: insulin pump accessories and cyborg embodiment [this post was so nuanced and complex and beautifully written that I hesitate to even do a pull quote because I strongly (strongly) encourage you to click through and read the whole thing]

Floeh’s designs permit wearers to make a strategic double-move around camouflage and visibility, simultaneously hiding the pump and drawing attention to its location (i.e., waist, hip, bustline). When I’m in disability-pride mode, I’m troubled by this kind of hiding, following the logic that visibility is good (i.e., wearing the pump on the outside makes us legible, shows the limits of clothes designed for bodies without peripherals, disrupts conventional, hetero feminine gender presentation) and hiding is, well, hiding, with its affective companions: shame, fear, desire for normalcy, willingness to pass.

But visibility is only one tactic among others, and hiding the pump can also be a radical act – especially if it facilitates feeling-good-while-diabetic (for example: the best act in my burlesque repertoire hinges on repurposing a strap-on harness as an under-dress pump-holder; most of the time, my solution to the dress-problem is a jury-rigged system involving a black garter with small cosmetics pouch from Benefit, bra straps, and safety pins to keep things from sliding down my leg – unless I’m already wearing a garter belt). Of course, in the case of hiding or disguising one’s pump, feeling good can also mean feeling closer to a conventional femininity and mythic norm. I don’t want to elide that possibility, but I also return to the reality of living with chronic illness: that we live in a space of contradiction, that we work with what we have & do what we need to do to claim our (sick, cyborg, incurable) bodies as desirable. In my ideal world – one I suspect Floeh wants, too – we’ll recognize that transformation can (and should) mean more than transforming the pump, or the wearer’s relation to it, to align more closely with a dominant, normate feminine ideal. Creating, enabling, accommodating, and celebrating a multitude of diabetic, cyborg embodiments — and advocating for wider access to the pump (with all of its troubling potential) for those who are uninsured and can’t afford the $6000 price tag — these are the kinds of social transformations that need to happen in conjunction with personal ones.

BBC News – Mental health research is ‘incredibly underfunded’

Only 5% of medical research in the UK is into mental health, despite 15% of disability resulting from disease being due to mental illness.  Last week, one of the major research funders, the Medical Research Council, published one of the most up to date reviews of the strengths and challenges of mental health research in the UK. It not only showed that the research that does get funded is world-class but that the UK is well-placed to lead the way in this area. The review concludes that there are several opportunities to fund more research in the UK that would help accelerate progress in developing new treatments, or lead to better ways of preventing mental illness in the first place.

7 News Denver – Is Xcel’s Tiered Rate Program A Surcharge On Disability?

Xcel Energy’s new tiered-rate program [for electricity] began Tuesday. Customers whose lives depend on electricity aren’t given an exception. Xcel users who need electricity 24 hours a day to power oxygen tanks or ventilators have to pay the same usage costs as someone who wastefully keeps on their air conditioning.”That’s what the problem is, it’s basically a surcharge for disability,” said Julie Reiskin, executive director of Colorado Cross Disability Coalition.Reiskin told 7NEWS her organization was never notified by the Public Utilities Commission prior to the tiered-rate system decision. The PUC oversees Xcel.”I was shocked we did not know about it,” said Reiskin. “It’s disturbing that the PUC saw fit to get input from Xcel, but not from the people who are directly affected by this.”

A Happiness That Forgets Nothing – You know what? I take back that shit about not hating people.

SO. My brother—my clinically depressed brother—was met by police today. You know why? Because he mentioned to his friends that he had suicidal feelings. So what did they do?
CALLING THE POLICE, TELLING THEM WHERE HE WORKS, AND HAVING HIM HOUNDED BY THEM ABOUT HIS PERSONAL FEELINGS IN FRONT OF HIS COLLEAGUES.
I am in tears right now. Enraged tears.
My brother has a mental illness. But he is still an autonomous, competent fucking person. He can make his own goddamned decisions without alleged friends having  him hunted down like a fucking criminal.

[and finally, a mystery in which I ask for your assistance! I have seen several blog mentions of this thing – product? service? – called ‘Buddy’ that has a contract with the NHS and is supposed to help people with disabilities and I cannot understand it! Perhaps you can help?]

Buddy is a post-digital social care service that seeks to improve the well-being of people living with long term conditions, and at the same time, reduce the cost of service provision. At the heart of Buddy is a social media radio which lets users broadcast from a physical device, to a range of social media platforms. By using social networks, Buddy extends the community of carers around an individual beyond healthcare professionals, to friends, families and peers. Our idea is to decentralise and socialise care, creating a more people-powered service, where friends and families are working alongside professionals to support individuals, in real time. Co-production is the jargon.

Ableist Word Profile: Crazy (to describe political viewpoints or positions)

  • Ableist Word Profile is an ongoing FWD/Forward series in which we explore ableism and the way it manifests in language usage.
  • Here’s what this series is about: Examining word origins, the way in which ableism is unconsciously reinforced, the power that language has.
  • Here’s what this series is not about: Telling people which words they can use to define their own experiences, rejecting reclamatory word usage, telling people which words they can and cannot use.
  • You don’t necessarily have to agree that a particular profiled word or phrase is ableist; we ask you to think about the way in which the language that we use is influenced, both historically and currently, by ableist thought.
  • Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

We just ran an ableist word profile on the word “crazy,” written by the lovely guest poster RMJ, who discussed how the term is used in a variety of contexts and situations. This follow up is sparked by what I’ve seen as a recent resurgence here in the United States in use of the term in a political context, to describe or characterize an individual with a particular set of political views. Every time I see it, it grates on me, and I thought it was worth a focused discussion here at FWD.

Before I begin, I should make clear that I personally identify as “crazy” sometimes. Not always, but when the depression gets overwhelming and I can tell my thoughts are getting tangled, or especially when I’m in the grips of a manic episode. (More accurately, I identify as a “crazy bitch,” but that’s neither here nor there.) I’ve also been consistently described by others as “crazy,” in contexts ranging from affectionate to outright hostile and dismissive. So when I see this term tossed around in the media, it feels personal to me.

And it’s been tossed around a whole lot lately, largely by traditionally liberal or progressive media outlets. I first started seeing it show up at Talking Points Memo, Josh Marshall’s blog that combines “breaking news, investigative reporting and smart analysis.” Marshall doesn’t mention it on the site, but it also contains a big heaping spoonful of ableism with that political analysis. Here are some recent examples:

This is just a sampling of the posts with headlines including the term “crazy” and is not at all comprehensive. Even within this sample, we can see that the term is used to describe viewpoints with which TPM does not agree (like revising history textbooks or arguing, like Gaffney, that the Pentagon logo indicates a secret plan to subject the United States to Shariah law) and thinks are biased, bigoted, racist, or otherwise offensive (such as the protests about Obama speaking to schoolchildren or the racial laws in Arizona).  None of the posts, though, engage or critique those viewpoints or speakers in a substantive way – simply describing them as “crazy” is seen as self-evident and no further discussion is needed to demonstrate these views or people should be excluded from reasonable political discussion.

There’s been an even more recent explosion of use of the term to describe Rand Paul and Paul’s views, after he won a Republican congressional primary in Kentucky.[1. An earlier version of this post had stated, in error, that Dr Paul won the Republican congressional primary in Virginia. Thanks, Katie, for the catch.] Paul favors the free market and freedom of private business, to the extent that he seems to believe that anti-discrimination laws are an unreasonable restriction on businesses. Now I am no fan of Mr. Paul – and wrote about my problems with him previously on FWD – but that doesn’t mean I approve of political cartoons like this:

A political cartoon portrays Rand Paul as the Mad Hatter from Alice in Wonderland. Added to the original Tenniel illustration are a 'Don't Tread on Me' flag, a Rand Paul button, and an I Heart BP button.
A political cartoon portrays Rand Paul as the Mad Hatter from Alice in Wonderland. Added to the original Tenniel illustration are a 'Don't Tread on Me' flag, a Rand Paul button, and an I Heart BP button.

To my mind, characterizing Rand as “mad” or “crazy” and not saying anything further is a lazy way to dismiss him and his ideology without actually having to engage with it. There is a lot to say about Rand’s ideas: how prioritizing private business over human rights preserves existing institutional structures that will continue to perpetuate racism, sexism, ableism, and other oppression if not checked by a larger force like the government; how the line between private and public realms is a lot fuzzier and less distinct than Paul implies it to be; that the Gulf of Mexico oil spill and BP’s seemingly inadequate safety protections and near complete inability to effectively respond are strong indications that business will prioritize profits over public goods like environmental safety; how an attitude of business before anything else will influence Rand’s views on everything from the minimum wage to immigration policy to climate control to internet neutrality. Those are all important discussions to have, discussions where we can’t assume that everyone in the audience will come down on the same side, but calling him “crazy” or “mad” and leaving it at that elides all of those complicated issues. Even more strongly, it implies that those discussions are not even worth having because it is so evident that the views or person being dismissed are wrong and absurd and laughable.

In Newsweek, Conor Friesdorf made an interesting observation about the policies and people who are dismissed as “crazy”:

Forced to name the “craziest” policy favored by American politicians, I’d say the multibillion-dollar war on drugs, which no one thinks is winnable. Asked about the most “extreme,” I’d cite the invasion of Iraq, a war of choice that has cost many billions of dollars and countless innocent lives. The “kookiest” policy is arguably farm subsidies for corn, sugar, and tobacco—products that people ought to consume less, not more.

These are contentious judgments. I hardly expect the news media to denigrate the policies I’ve named, nor do I expect their Republican and Democratic supporters to be labeled crazy, kooky, or extreme. These disparaging descriptors are never applied to America’s policy establishment, even when it is proved ruinously wrong, whereas politicians who don’t fit the mainstream Democratic or Republican mode, such as libertarians, are mocked almost reflexively in these terms, if they are covered at all.

What I conclude from that is that the media doesn’t consistently use “crazy” and other ableist terms to refer to absurd policies or those that lack rational support, but instead reserves those terms for people outside of mainstream politics. Which in turn implies that the term is used primarily to further marginalize and dismiss people who don’t fit expectations of what a politician is or what are common or popular political arguments. To me, this is even more evidence that the implicit subtext of terming a person or policy “crazy” is “shut up and go away, or start blending in better.” Which, again, is exactly the message leveled at people with mental illness when they’re called “crazy” or “loony” or “unhinged” or any number of synonyms.

This selective usage is even more reason the term “crazy” shouldn’t be used in the political context – partly because it’s a lazy out for commentators who refuse to engage with the actual policy issues or political ideas being proposed on a substantive level, and partly because it fiercely underlines and reinforces marginalization and dismissal of people with mental illness. It reminds me that when people call me “crazy,” what they really mean is “stop existing in my consciousness – either disappear or become normal.” To see progressive writers and organizations rely on the marginalization of people with mental illness to score easy points against unpopular politicians is upsetting not only because of their perpetuation of ableism, but also because it puts me in the extremely uncomfortable position of defending people like Palin and Paul against this kind of criticism.

Recommended Reading for I Can’t Believe May is Almost Over!

I mean, where does the time go?!

A dark body protrudes from the left, with many thin tendrils along it, showing orangey red.
A dark body protrudes from the left, with many thin tendrils along it, showing orangey red.

Second-harmonic generation microscopy image of a primary cultured Aplysia neuron stained with the membrane dye DHPESBP. The signal is modulated by membrane potential and was found to be capable of recording action potentials with 0.6 µm and 0.833 msec spatiotemporal resolution. The high-resolution and deep tissue imaging capability of this nonlinear microscopy technique should prove valuable to future electrophysiology studies. (Journal of Neuroscience) [Not entirely sure what all that means, but I find the brain endlessly beautiful and fascinating.]

Diary of a Schizophrenic – Little Girl

I am writing this to you because I want you to remember.  I want you to remember that you love unicorns and crystals, pinned butterflies and christmas beetles, love hearts and sea shells, sequins and puppy dogs. You feel special you have your ears pierced even though you are only six and you already know Santa isn’t real.  You love fairies but don’t tell many people because you are tough and like playing with the boys. You can catch and throw a ball and love to dance.  Dressing up will always be your favourite even when you’re big. Even though somewhere deep in side, you are sad, you love a lot and you see beauty everywhere.  You are smart and quick and can already talk the tail off a donkey.  You question everything and most people do not realise your careful quiet soul. One day, when you are older, you are going to lose your mind.

Pulse Media – For Enlightened White Guys [a useful set of tips for anyone participating in a group in which they have privilege]

5a. Count how many times you put your ideas out to the group.
5
b. Count how many times you support other’s ideas for the group.
6
. Practice supporting people by asking them to expand on ideas and dig more deeply before you decide to support the idea or not.
7
a. Think about whose work and contribution to the group gets recognized.
7b. Practice recognizing more people for the work they do and try to do it more often.

Boston Herald – Disability Group Faults Massachusetts on Water Crisis

An advocacy group for the disabled today filed a federal civil rights complaint with the Department of Justice over the state’s handling of a drinking water crisis earlier this month. The complaint made by the Disability Policy Consortium says the state wasn’t prepared to adequately respond to the needs of disabled and elderly people when a water main break left nearly 2 million eastern Massachusetts residents under an order to boil their water for several days.

All Africa – Nigeria: Yuguda Makes Case for Children With Disabilities

FIRST Lady of Bauchi State, Hajiya Abiodun Isa Yuguda and Founder, Challenge Your Disability Initiative, CYDI, yesterday at 2nd Vanguard Children’s Conference, called on corporate organisations across the country to learn to include children with disabilities in their programmes as part of efforts to show love and care to such group in the society. Addressing the children at summit held as part of exercise to mark this year’s Children’s Day celebration, Mrs Yuguda said children with disabilities should not be left out in programmes, particularly, programmes that would help shape their lives as future leaders.

AP – Spike in Disability Claims Clogs Overloaded System

Nearly 2 million people are waiting to find out if they qualify for Social Security disability benefits. It will be a long wait for most, even if they eventually win their cases. The Social Security system is so overwhelmed by applications for disability benefits that many people are waiting more than two years for their first payment. In Ohio, Michigan, Minnesota and other states, the wait can be even longer.

Penhurst Asylum Archives. No excerpt, just a recommendation to browse the astonishing range of original source documents available at this archive of Penhurst State School and Hospital, which was surrounded by and eventually closed in response to allegations of abuse and neglect. A lawsuit after the facility closed led to a Supreme Court decision establishing that people who are involuntarily confined are entitled to “reasonably safe confinement.” The site is a testament to those who were subject to conditions that nobody could call reasonably safe. There’s some interviews and personal accounts, papers documenting problems at the hospital, and even redacted patient reports.

For Cereal, Internet?: I Has A Hotdog edition

I love looking at pictures of cute animals on the internet. Cats, dogs, monkeys, dolphins, turtles, otters – whatever. And I find that skimming through a few LOLcat macros during the workday can do wonders to perk up my mood or give me a smile before diving back into work. Which is part of why I get so annoyed when the LOLcat sites do something offensive or wrong – this is supposed to be my fun time, not my get-my-rage-on time! I have a whole other folder of RSS feeds for rage time!

So I got mighty cranky when I saw this at I Has a Hotdog, the spinoff site from I Can Haz Cheeseburger that has LOLdog macros:

A group of identical white pomeranians, with the caption "Multiple Personality Disorder: you're doin it right."
A group of identical white pomeranians, with the caption "Multiple Personality Disorder: you're doin it right."

Ok, FOR CEREAL??? This is not only offensive, it doesn’t even make sense. A person with Multiple Personality Disorder (MPD), which is more commonly and more accurately termed Dissociative Identity Disorder (DID), does not manifest in multiple identical bodies. The whole point is that there is one body/mind that manifests multiple, distinct identities or personalities, called alter egos. A person who could split themselves into multiple identical bodies, all with distinct identities, is not a person with MPD or DID, but instead is some kind of magical self-cloning person who should probably be off fighting crime in Gotham City.

This underlined for me how DID is a go-to joke, a punchline often used in contexts or situations that make absolutely no sense to anyone who actually understands what DID is. It’s a lazy way to make a joke about a “bizarre” or “outlandish” mental illness without even taking time to understand the diagnosis being thrown around so cavalierly. For me, it reads as a shorthand “hahaha saying the name of a mental illness is funny isn’t that funny??”

I can’t imagine how this use of DID as shorthand for “exotic and hilarious mental illness” must affect people who actually experience DID. Given that the second google link when I searched for “multiple personality disorder” is to a site discussing whether MPD or DID actually exist or whether they are made-up movie illnesses, I imagine there’s an extraordinary stigma experienced by people with DID and an overwhelming tendency to doubt and discount their experiences at best, and to mock and ridicule them at worst. These kind of “jokes” only add to those issues. And they should not be tolerated.

Recommended Reading for Thursday May 20 2010

An image of a beach with blue sky, dotted with clouds. A figure sits in the sand by the waves. In the foreground, a wheelchair sits on the sand.
An image of a beach with blue sky, dotted with clouds. A figure sits in the sand by the waves. In the foreground, a wheelchair sits on the sand.

“….” by mataikan, seen at binary canvas.

Ghana News Agency – Mental Health System on the verge of collapse

Dr Akwasi Osei, Chief Psychiatrist of the Ghana Health Service, on Monday said the mental health system would soon collapse if the Mental Health Bill was not passed to correct the abuses and injustices in mental care. He said it was unfortunate that the Bill, drafted in 2004 and completed 2006, was still lingering at the Ministry of Health. Speaking at a workshop on the State of the Mental Health Bill and the United Nations Convention on the Rights of Persons with Disabilities, (UNCRP) for media practitioners, in Accra, he stressed that there was the need for the law to protect the rights and interest of patients and to overhaul the entire mental health system.

Guernica – Jonathan M. Metzl: In Medical Records, a Story of the Racialization of Schizophrenia

Ionia held these men using little-known loopholes in deinstitutionalization amendments that stipulated that the hospital would continue to receive or contain patients deemed too violent for state correctional institutions, or who posed “dangerousness to the community” even after most other patients were set free. The word negro appeared on the upper right corner of the face page in eight out of every ten of these charts. And schizophrenia, paranoid type was overwhelmingly the most common diagnosis applied to these men, these institutionalized black bodies that deinstitutionalization left behind.

the personal hurricanes of kirsty mitchell – quote from siri hustvedt, the shaking woman

the DSM does not tell stories. It contains no cases of actual patients or even fictional ones. Etiology, the study of the cause of illness, isn’t part of the volume. Its mission is to be purely descriptive, to collect symptoms under headings that will help a physician diagnose patients. there is a companion DM-IV casebook, but notably, these narratives about real doctors and patients are gathered in their own volume, seperate from the diagnostic tome.The fact is that all patients have stories, and those stories are necessarily part of the meaning of their illnesses. This may be even more true for psychiatric patients, whose stories are often so enmeshed with the sickness that one can’t be untangled without the other.

Toronto Sun – Family denied residency because of disability

A French family denied permanent residence in Canada because one of the kids has cerebral palsy may have to leave the country following a federal court decision Tuesday. David Barlagne has been working in Montreal since July, 2005. He applied for permanent residence status for his family but was turned down because of the extra costs of putting his daughter Rachel, who has cerebral palsy, through elementary and secondary school. Under Canadian law, immigration officials have no choice but to deny applicants whose health condition could cause excessive demand on social services. Barlagne appealed but the federal court upheld the original decision.

Caltics – Don’t Fall For Arnold’s Wedge [California governor Arnold Schwarzenegger recently issued a proposed state budged with drastic cuts to essential programs for low income Californians and Californians with disabilities.]

Now it must be said that it’s not just the poor who will suffer under this budget. But the budget cuts are quite obviously calculated to hit those Californians without a voice, who are seen as marginal, whose funding can be cut with the least public outcry. The elderly who will lose some or all of their IHSS benefits and the children who will lose health care services are not necessarily “poor”; those cuts will hit the middle-class as well. We can’t fall for Arnold’s wedge. Arnold is shifting tactics because he’s scared of us – scared of the public reaction against three years of austerity. Now is the time to ramp up the attack on that austerity, to move beyond tired old Reaganite claims that there’s some difference between the needs of the middle-class and the needs of the poor. Many middle-class families have benefited from the very safety net programs Arnold now proposes to cut or eliminate, and many more middle-class families benefit – at their jobs and businesses – from less fortunate families having at least some state assistance.