Monthly Archives: May 2010

How Many Straws?

A blue and white lane-marking buoy in a swimming pool.I know that I am not 18 any more.

One of my doctors kindly pointed that out to me recently.

What I mean is that I can no longer demand of my body what I once did. And I know this, as I embrace the things that come with years gone by. Aging is a complicated issue for me, emotionally charged and not something I am willing to discuss right now, but it is important to note that this post is not about aging. It is, however, about the way my body has worn down due to my disability.

When I was 18 I drilled endlessly on the U.S. style football fields, with the careful precision that four years of training an 8-to-5 step — that being my ability to march exactly eight steps in five yards to whatever beat you set for me — will ingrain into a person. I was able (and expected) to teach others under me to do the same all while playing the horn. To this day I can not hear most music without at least tapping my foot. Emerson, Lake, & Palmer’s “Karn Evil 9” will actually cause me to hum along wistfully. Later I did the same at University. Anyone who participated in University Marching Band at Eastern Michigan University can tell you that marching band was not something you just did, but rather worded at, and I worked hard. Hauling that tuba around during pregame was no easy feat. There was a reason music majors received PE credit for marching band.

Before I was diagnosed I was a runner. When I was 18 I had pounded out miles on the track and on mapped out road routes in order to get into the condition I needed to race for years. I was able to sprint out the eleven or thirteen steps, whichever felt right, to take me to the high jump pit and sail over the bar. I wasn’t amazing, but I had determination to demand it from myself. I ran in high school, and I hated it. I loathed it. I had clever names for the malevolent task-masters whom I called Coaches that I went to voluntarily every day after school and asked for work out schedules and whose hands I shook afterwards.

I ran before, during and after my pregnancy (when I wasn’t throwing up), cussing myself out the whole time. I ran in Navy boot camp, filling myself with the urge and the desire to do well. I hated every moment, but loved the feeling of feet on pavement even as my shins cried out in pain. I filled myself with the desire to go one step further, two, one mile, two, as I shoved tears out of me to replace the pain that filled my body (and I usually peed my pants a little at some point, but that is another story).

Eventually the shin pain became a lot worse. It was massive, and no amount of ice or ibuprofin was going to alleviate it. A bone scan later and some Tolkein-esque blathering you don’t care about and I am told I can never run again. Sure, the Navy loved that. I couldn’t get a chit to back it up w/o getting kicked out earlier than I already did, so I had to go back every 45 days or so to get a new one, and I had to be very sure it was a nice sailor-doctor who signed it, because the Fitness Enhancement people were not going to take anything signed by anyone who was a civilian or any other branch of the military regardless of what degrees they had on the wall. So, running was right out, and they weren’t making it easy for me to, well, take care of me.

I became a swimmer, and I was fantastic at it. I probably knew this deep down, having been a natural swimmer since before I could walk. Had anyone told me that I could swim as an option to running in the Navy sooner I would have. I swam thousands of meters a day, until I was exhausted (trying not to notice that my body was telling me this was sooner and sooner each day). I would do kick turns through migraines that were getting more and more fierce despite the amount of over-the-counter meds I was pounding. Go figure. My Fitness Test scores went from Good/Low to Excellent/High.

Until my abdominal muscles gave out.

I finally pulled something doing sit-ups. I went from doing in the high 60’s to barely being able to do the 35 that was required to pass for my age group pretty much overnight. I would get to 15 and the pain would make me yell out it was so sharp. I could almost clock it, too. Of course sit-ups were always first, and this made push-ups impossible. I couldn’t even do the simple 15 I needed to pass. My doctor felt around, and determined that core exercises were out for fitness tests. I was to do them only at my own pace or with a doctor in physical therapy.

Finally the headaches were bad enough that it was too much and my swimming was scaled back. My exercise was restricted so much that I was barely allowed to do 30 minutes a day. I was still not receiving any pain medication other than anti-depressants, which were not working for me. I started seeing a chiropractor, and doing yoga, which I was told was not a “real” workout, but would count for my weekly number of workouts anyway. Even then I couldn’t do a full class because I was in too much pain.

Still, as I gained weight, cornered in by pain and now stuck in a body that wasn’t allowed to move anymore, my new doctors (because they were always changing) said that I just needed to lose weight, if only I would watch my diet and include more exercise into my daily routine, which by now was only limited to half days of work due to pain and 15 minutes of exercise by my chiropractor and PCM, and Hey! How about seeing a dietician?

After my discharge, when my second career choice was unceremoniously ended with me handing over my ID card, I finally settled into a place where I stopped hating my body so much (OK, you got me, I’m still working on it). I am finally on a pain management regimen, I do light exercise as the pain permits, and my body is stable at a weight that hasn’t fluxed one way or the other for a few years now. I had to give some things up (drinking alcohol any more than a few sips being the one that comes to mind mostly) because of those medications. But all of this aside, I have tried to take care of myself. I have followed what doctors have told me to do, I didn’t smoke, I tried to eat right, I wore sunscreen…I even eat very little meat, having been an on again/off again vegetarian. I know that these are not hard and fast actual things that guarantee health, they are just things that I have always followed because some doctor or dietician or another has advised me blah blibitty blah… What I mean is that I have very few of what people generally consider vices.

Recently I had some issues where I have been vomiting in my mouth, acid reflux, heart burn, all kinds of fun stuff. They gave me a nice, handy laundry list of things I need to give up in order to help alleviate the symptoms now that they have prodded around my duodendum with a camera.

Things like coffee, and chocolate, and anything spicy (or tomato-based in general), which are three of my favorite things. All citrus foods are right out, which I expected, but they snuck in things that surprised me, like mint and mint flavoured things, which took half of my herbal teas out as well. Finally, I find myself with no vices if I am to follow all of the doctorly advice to maintaining my health.

Let me tell you that I have not been a pleasant person to be around lately. I depend on that Super Human tolerance for things like caffeine and chocolate (sometimes at the same time!) to fuel things like my snark and ability to write 2,000+ word blogs posts. I have sustained myself on coffee and little else at times. It is often the centerpiece of friendly chats and family gatherings.

It leaves me to wonder, how many straws do we lose before we say “that’s the last one? I can’t take any more!”?

What lines do we draw when we get all of that medical advice, when things that we enjoy or that we once did have been stripped away from us one by one, to balance a quality of life for ourselves so we don’t sit around stewing about what we can or can’t do anymore, and to make sure that we do actually pay attention to the call of our bodies as they try to tell us something (if they do send us signals at all)? Where do we draw the lines between telling our bodies to piss off because we need that comfort, that thing that helps us get through the day when we feel like everything else has been taken from us?

Or am I making mountains out of molehills here?

Photo credit: ashleigh290

Recommended Reading for Wednesday, May 26, 2010

T-shirt with GOMPERS showing a tree and several children and an adult walking.  Some of the children are using crutches or wheelchairs.
Description: T-shirt with GOMPERS showing a tree and several children and an adult walking. Some of the children are using crutches or wheelchairs.

By Flickr user Cobalt123, used under a Creative Commons License
Disability Blog Carnival: Tell the Story!

Another awesome collection of posts in this month’s carnival!

Well, at long last here is the Disability Blog Carnival on Story. I am adding posts and such as I go… so visit often, there may be new rides!

Details on the next Carnival.

Rolling Around in My Head will host the June Carnival – June is ‘pride month’ wherein people celebrate LGBT pride – So I thought we’d have a pride carnival, I want people to submit the blog (or even two) that they wrote that they are most proud of. Not the one that got the most comments, but the one that you felt said what you wanted to say, how you wanted to say it and you are proud of it.

Also, Penny is looking for hosts for upcoming Carnivals. Doing Carnivals can be a bit time-consuming, I admit, and can take up energy that you may want to put someplace else, but you can get a lot of help with it, too. When we did the Carnival, lots of folks emailed in links, and Penny was really generous with link-sending as well.

Also in Carnivals: The Eleventh Carnival of Feminist Parenting!

Welcome to the eleventh edition of the newly two-monthly Carnival of Feminist Parenting. It looks like my decision to make it two-monthly – and the hard work of readers plugging it in their own blogs – has paid off, because I’ve had lots of submissions for this edition!

Executive Functioning Blues

Uh-oh. This is not good. A local autism society is requesting that my workplace participate in some sort of autism walk. There is a puzzle piece on the page. There is a breezy suggestion about who should head up the efforts, and the person named is a friend of mine. I check the autism society’s website to see how they have described the event. Although it has been publicized as a Missing Piece March, it seems that it will be more of a festival, with games for kids and information booths. I click through the site, and find no mentions of devastating diseases or burdens on society. Hmmm…the event itself is described as a place where autistic kids can be themselves without being judged. Barely a mention of the existence of adults, and of course no questioning of why autistics can’t be themselves everywhere, but I’ve certainly seen worse. On to the links page.

So Now What?

During my phone call with GDA yesterday, I was ensured that they are always discussing me and which dog(s) would be best. So, they will definitely keep looking for the right dog for me. However, I was also told that they would totally understand if I opted to go to another school, since I’ve been waiting so long. She said they really just want me to have a good guide dog, no matter where it comes from. So, she assured me that it’s okay to re-weigh my options (especially since nobody has any poodle cross breeds right now, which factored into my original decision last summer). And this is actually something that I have been thinking about more and more lately.

Autistic Man Tasered for Unknown Reason

The state of Georgia is getting a bad name with me for its treatment of autistic people. Last Friday, an autistic man was tasered, taken to the ground, and charged with disorderly conduct for a reason that remains unclear.

Academic Conferences: Who Can Afford to Attend?

The money I have spent is on my mind since I heard one scholar at the last conference I attended implore people with a disability to attend conferences. Great advice I thought which was quickly followed by a second thought: who can afford to attend these conferences without institutional backing? When I attend a conference all expenses come out of my pocket including registration. All academic conference are expensive and I draw the line at $200. This line eliminates many conferences I would like to attend and I will admit I make exceptions and spend more once in a while. Am I being cheap as my son would suggest? I think not when one adds in the cost to register, hotel or motel accommodations, food and transportation. For instance the conference I attended last weekend at Union College cost me almost $500. To me, that is an expensive weekend–a work weekend no less.

Headlines:

Canada: Disability group honours Tim Horton’s owners

US: Continuing education with disabilities

Australia: Disability Tax Reform Introduced into Parliament

Recommended Reading for May 25th, 2010

Dorian at Dorianisms: “Men Who Get It”

The danger lies in beginning to assume that you are some kind of Ultimate Authority, and in particular, that you can teach people about their own experiences. That you know better than marginalized people what is happening in their lives, with their marginalization. That you are the Ultimate Arbiter of what is and is not offensive. In short, once you assume you “get it”, it’s very easy to become a mansplainer. Or a straightsplainer or ablesplainer or whateversplainer, as the case may be. The point is that this is really, really, bad. And can pretty directly be traced to the assumption that you “get” something better than, y’know, the people who actually live it.

Diane Shipley, special to the LA Times: My Turn: A Chronic Fatigue Syndrome sufferer reconnects with the world

Embarrassingly for a former English major, I lost words, even simple ones. “You know, those things! They go on feet!” I’d cry, frustrated.

“Shoes?” my mom would ask. “Socks?”

Janani Balasubramanian at Racialicious: Sustainable Food and Privilege: Why is Green always White (and Male and Upper-class)

Still, what could be better than a return to family farms and home-cooking, which many of these gurus champion? The images are powerfully nostalgic and idyllic: cows grazing on sweet alfalfa, kids’ mouths stained red with fresh heirloom tomato juice, and mom in the kitchen rolling out dough for homegrown-apple pie. But this is not an equal-access trip down memory lane.

darryl cunningham at tallguywwrites (LJ): The Facts in the Case of Dr. Andrew Wakefield [Image-heavy]

A fifteen page story about the MMR vaccination controversy.

AWP: Why writing about Language Isn’t Enough

A cookie.  In icing it reads Meets Minimum Standards of Decent Human
Description: A cookie. In icing it reads Meets Minimum Standards of Decent Human. By sajbrfems, used under a Creative Commons License.

This is Part 2 of a 2-part series about Ableism & Language. Part 1: Why I Write About Ableist Language.

In social justice blogging circles, especially feminist-focused ones, it’s not unusual to have conversations about language, and why language matters. Those conversations can vary from explaining why it’s problematic to call women & girls “females”, why using “he” and “mankind” to be a generic non-gendered term is sexist, reclaiming – or not – of words like “bitch”, and what it means to refer to “undocumented immigrants” rather than “illegals”.

These conversations often focus on how sexist or racist language is a symptom of a problem that needs to be addressed. We can talk about how calling women bitches is a sign of sexism, or referring to people as “illegals” is dehumanizing to immigrants. And yet, when trying to have discussions about ableist language, we’re back to the silo of disability. Instead of talking about ableist language as part of the manifestation of the disdain and abuse of people with disabilities, it’s treated as isolated – the problem, instead of a symptom of the problem.

Ableism is not simply a language problem.

Ableism manifests in the social justice blogosphere in so many different ways. They can vary from just not thinking about disability at all when writing about social justice issues to shrugging off critiques from disability-focused bloggers as being “too sensitive”. It can be ignoring posts about disability-focused issues or only linking to non-disabled people writing about disability-issues instead of to disabled bloggers. It can be as apparent as declining to acknowledge disability exists to as “subtle” (to some) as declining to make your blog template accessible to screen readers.

There are also choices that social justice bloggers make about how we educate ourselves, and whose voices we highlight, who we approach about their writing, and who we ask to be mediators. If we’re not reading disability-focused blogs, then we’re not learning about disability-focused issues – and, in turn, we’re not highlighting those voices, bringing attention to those issues, or thinking about that analysis when writing our own posts.

Thirdly, ableism manifests in whose voices we trust. For all that I’m very happy to provide people with book lists, I’m a bit suspicious of people who decline lists of disability-focused bloggers they could be reading as well. Why does someone’s voice have to go through the publishing-sphere (and usually through academia for the books you’re going to get from me) before it counts as worth-reading?

I get why people talk about language, and I agree that language is important. But I’m not giving cookies out for publicly declaring your ally-status by saying you won’t (or will try not to) use ableist language anymore. That’s a great first step. Now move on.

[Thank you to s.e. smith for helping me clarify my ideas.]

What is “healthcare”? A tale of a murderer, a victim, and a tattoo.

[*** WARNING for detailed domestic violence description from the fourth paragraph on. ***]

My local paper has been abuzz with righteous taxpayer outrage over the State paying for a tattoo removal for a woman, who I’ll call JMN.

The story of JMN disrupts a number of neat stereotypical societal narratives about domestic violence, about victimhood, about killers, about the meaning of ‘healthcare’.

To go back to the beginning, at least to the beginning of the public part of the tale, JMN is a convicted murderer. She was found guilty nine years ago of murdering her “Internet lover”, MW.

According to published accounts of the trial, JMN’s husband MH, an abusive, violent gang member, found out about her relationship with MW, and “punished” her repeatedly. He violently cut off her hair, leaving her needing skin grafts to her scalp and hand. He beat her repeatedly, with fists, with pool cues, with a belt. He poured boiling water over her. He forced her to have a tattoo reading “Property of [MH’s full name]”. He punched her and choked her, leaving her needing hospital treatment.

And after all of this abuse and intimidation which left her in fear for her life, he visited and threatened the lover, then ordered JMN to kill him.

JMN shot MW under her abusive husband’s orders, backed by this violent intimidation, and she was convicted of wilful murder. She has been in custody ever since, with a minimum sentence of fifteen years.

Unsurprisingly, perhaps, JMN now has mental health issues. (These are not described in detail in the press, nor should they be.) She was a victim of unspeakable violence (as well as being a perpetrator under duress), and is currently seeking criminal injuries compensation – which is what has triggered off the righteous-taxpayer-indignation. Her criminal injuries compensation was initially refused, and the case is now under appeal.

But the Righteous Indignant Taxpayers haven’t stopped there. The papers are now pawing over the rather insigificant detail that the State may partly fund tattoo removal for JMN. The Department of Corrective Services has committed to paying for half the cost of the procedure, which is expected to cost only $2000.

$2000.

The shadow attorney-general is outraged, he says, outraged! How dare the Precious Indignant Taxpayer be asked to fund “cosmetic surgery”! The Corrective Services Commissioner has responded in sensible and general terms, saying that he “was acutely aware he had to take into account many factors when making difficult and sensitive decisions in cases that involved complex social, psychological, cultural and physical health considerations”, and that he made a judgement call, as he does on a daily basis.

JMN is statistically at very high risk for mental health problems, self-harm, and suicide. She is incarcerated, and suicide is the leading cause of death in Australian prisoners. She has been the victim of horrific domestic violence, and victims of domestic violence are five times more likely to commit suicide than average. The Commissioner took into account psychological reports and his personal interview with JMN when making the determination that the State would fork out a grand or two to take off the tattoo she was violently forced to get, the tattoo that is reminding her constantly of her abuse and contributing to her mental health difficulties.

Let’s get a little perspective. One acute psychiatric bed-day in Western Australia costs just over $1000. The cost of this tattoo removal equates to around one weekend stay in hospital for a relatively minor psychiatric crisis. We’re not talking huge pots of cash here. We’re talking about a sum that is absolutely tiny in the scale of costs involved with healthcare and with the justice and corrections system.

We expect, as a society, to provide healthcare for prisoners. Western Australia is committed, on paper at least, to providing prisoners with the healthcare they need, including mental healthcare. The general level of care we as taxpayers have committed to equates to the level of care that people should be provided in the public healthcare system. Tattoo removal is on the proscribed “cosmetic surgery” list for State hospitals, but that list comes with one very important caveat – that the procedure should be denied State funding if there is no “clinically significant” indication.

I can’t think of any more “clinically significant” indication than a tattoo someone was forced to get at the hands of her abuser, a tattoo that is making her sick. A tattoo that reminds her around the clock of his attempts at intimidation and dehumanisation. A tattoo that states outright that she is the “property” of this violent man. A tattoo that contributes to her greatly increased risk of self-harm and suicide.

Cannot we, as fellow humans, can find enough shreds of compassion to be comfortable with spending this trivial sum on what is likely to be a cost-effective contributor to the health of someone we are, as a group, responsible for?

This case is a touchstone for a whole pile of prejudices. It makes people particular uncomfortable, I believe, because it disrupts the nice little myths that nice little Indignant Taxpayers like to indulge in. The neat little “innocent-victim” narrative of domestic violence is disrupted by the fact that this women is also a perpetrator. The neat little “evil-murderer” narrative is disrupted by the fact that she was the victim of horrendous abuse, and that she committed the killing under fear for her own life. The neat little “nasty slut” tattooed-woman narrative is disrupted by the fact that she was forced to get this tattoo in the course of her husband’s abuse. The neat little “adequate healthcare” narrative is disrupted by the fact that tattoo removal usually lies outside of what some of us might usually consider to be “healthcare”.

All of this is adding up to a situation where the Righteous Indignant Taxpayers want to wash their hands of it altogether, though it’s clear they’d rather have a set of public stocks and rotten tomatoes to throw. They shout in comments “Give her nothing but bread and water”, “Why am I responsible?”, and “This woman knew what she was marrying into – hard cheese, I’d say”. Revolting.

Australia’s National Mental Health Policy states that as a nation, our key aims in mental healthcare include the prevention of the development of mental health problems and mental illness, the reduction of impact of mental health problems, and the promotion of recovery from mental health problems. These aims apply no less to people in custody, who are at extremely high risk and have particular mental healthcare needs that are all too frequently dismissed or actively resisted by people in a society that wants nothing more than to inflict as much suffering as possible on prisoners.

There’s an interesting wider question here, which is about our definitions of healthcare, and about the fact that the determinants of health often lie outside the very narrow systems and procedures that we label “necessary healthcare”. For example, we know damn well, on a macro scale, that poverty and inequality is a more important determinant of health than doctors and nurses and public education programmes aimed toward “behavioural modification”. Could not a piece of marked skin be a more important determinant of health in a single person than all the psychologists and pills in the world?

Ableist Word Profile: Why I write about ableist language

  • 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

This is Part 1 of a two-part series on Ableist Language Discussions in the Blogosphere.

There’s a lot of chatter that goes on ’round the Social Justice Blogosphere about Ableist Language: what is it? what do you mean? those words don’t mean that! how can you say that? what does that mean? why are you bringing this up? don’t you have more important things to talk about? Intentions intentions intentions! It makes my head hurt.

I talk about ableist language for a variety of reasons. The most obvious, I think, is to challenge ableist ideas that center the experiences of non-disabled people. When someone proudly assures me that words like “lame” and “dumb” and “r#tarded” are never used to describe actual people with disabilities, I’m fairly certain I’m talking to one of the currently non-disabled. Currently non-disabled readers, I’m here to tell you: those words, and any similar words you think are “archaic” and not used anymore, are used all the time, as taunts and insults towards people with disabilities, and in some cases as official diagnoses. Some of them are also used in reclamatory ways by some disabled people, but certainly not all.

But it’s more than that. Part of why I challenge ableist ideas and ableist language is because I would like more Social Justice bloggers to think “Oh, yeah. People with disabilities also read social justice blogs! I should remember that more often when I’m writing.” [I also like to challenge it in other places, which is why I occasionally go through spaces like Wikipedia & TVTropes and re-write every instance of “wheelchair bound“.]

There’s a strong tendency to assume that disability-related issues are somehow a separate thing, as though there’s a Disability Silo and things like reproductive justice, racism, heterosexism, anti-immigration, transphobia, classism, and misogyny, etc, don’t actually enter into that silo. As though no one with a disability is interested in reading about these topics, or is affected by them in any way, or is an activist on the topic, or wants to be more of one.

When someone writes something like “Wow, those anti-immigrant people are r#tarded idiots!” [I made this example up] or giggles about seeing Dick Cheney “wheelchair bound” because “it couldn’t happen to a more deserving person!” [I did not make this example up], I bring up the ableism, and my activity in the disability rights movement, as a way of reminding them that we’re here. We’re reading. We’re participating. And it’s more than a little-bit alienating to see social justice bloggers using our experiences and oppressions as their go-to for “insulting people we don’t agree with”.

But at the same time, I don’t think talking about ableist language – no matter how well-intended – is enough. It’s a step. But that’s all it is.

I will write more about that tomorrow.

Recommended reading for Monday, May 24 2010

A service pup in training
Description: An Arizona Golden puppy wearing a Halter that reads “Service Dogs Helping Others Improve Their Lives”

From flickr user Cobolt 123, used under a Creative Commons License.

Teacher duct tapes disabled boy’s arm to wheelchair

Anthony Birden, a 12 year old with shaken baby syndrome, who can only communicate with his right hand, had that hand restrained with duct tape by a teacher in Colorado. Teacher Leslie Garcia said it was the only way she could make him stop doing a gagging movement. The boy’s grandmother says that is the way the child communicates.

The district attorney decided not to charge the teacher. However, the incident continues to be investigated by the Center for People with Disabilities, who believe the act is against state law. After they submit a report, they will follow up with the school. A review by the federal office of civil rights may take place.

Checking Assumptions (at the door!)

Today we have a poll!

I want you to read the scenario described below and then answer the poll questions as you read them. Please answer AS YOU READ, don’t read all the questions before you answer and please don’t read the comments before you answer!

War and Disability in Afghanistan

This article offers insight into day-to-day issues facing ordinary disabled people in different parts of the world. And it manages to avoid the melodrama that peace advocates sometimes invoke when talking about disabilities caused by war.

Even as we fight our own critical battles for civil rights and essential support services, disability rights activists must be aware of the impact of our government’s military actions on people with disabilities across the globe.

Hilary Beaumont has written a three-part article for the Halifax Media Co-Op on Rape: Part 1. Part 2. Part 3.

Via Sharon Wachsler in comments:
The Voices Behind the Disease

I want to give others a chance to use their own voice. I know that while my writing may be useful, everyone’s journey, story, experiences and needs are different. What I experience and what I say may not apply to everyone else. I wanted to help others voice their own account of Lyme and the affect that it has had on their own life, and what they wish that their friends and family would understand. It is my hope, that if I put together the words of more than one Lyme patient, I’ll be able to paint a vivid picture of the disease and its many shapes, forms and effects. We will be able to paint a vivid picture of the disease, not only for Lyme Disease Awareness Month, but for the understanding and support that every Lyme patient needs and deserves.

I posed a question: What is one thing that you wish your family and friends understood about your disease and how it has affected your daily life?

I’d like to share the answers with you.

I’ve been really enjoying some of the stuff coming my way via @disabilitygov on twitter. It’s US-based, but at least some of it is applicable to other countries as well.

Best Practices Guide in Mentoring Youth with Disabilities [link is to description, the guide itself is available in PDF & Word] I’ve only skimmed the 145-page document, but it’s reminded me how much I want to do some Mentoring programs once I settle down in one place.

A guide on best practices and programs for mentoring young people with disabilities, including suggestions on starting or expanding a program to include youth with disabilities

They’re doing a 100 Days to the ADA blog that may also be of interest.

Have you been reading RMJ’s TelevIsm posts at Bitch Blog?

In the News:

Henderson: Finding the right word to describe the disabled is often a struggle

Alberta Must Restore sex-change funding

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.

Chatterday! Open Thread.

This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world? Got any questions for your fellow FWD commenters?

Today’s chatterday is hosted by a puggle. Born at the Perth Zoo, this wee girl is one of the first to undergo a new genetic test to determine its sex, which will hopefully lead to more successful breeding programmes for the endangered varieties of echnidna.

teeny tiny long-nosed spiky puggle in a person's hand

A note to commenters: Please, as with other threads, keep the length of your comments down. A usual guideline, in the absence of extenuating circumstances, is to stick to around three pithy paragraphs or so, and to avoid making back-to-back comments.

Why Don’t Non-Disabled People Trust People With Disabilities Anyway?

Disability simulations and disability awareness days are condescending and patronizing towards people with disabilities. Instead of “raising awareness” about the “struggles” people with disabilities face, they end up raising awareness of how difficult it is to be a first-time wheelchair user, open bottles with socks on your hands, or navigate spaces with your eyes closed. They do not actually teach anyone anything about disability.

 


 


 


 

I suppose it would be wrong to end the post there.

First, a bit of context. Last week marked the third year that some Canadian Members of Parliament (federal representatives) – including my own, Megan Leslie, and the NDP party[1. NDP = New Democratic Party. They’re our more-left-of-center-than-the-Liberals party in Canada. In the UK, they’re like the LibDems, in Australia, I think they’re like the Labour Party (but I’m not sure) and in the US… well, in the US, they’re scary socialists who want universal healthcare and support unions and are pro-choice, so they’d be non-existent in your current political environment.] whip [1. The party whip is the person in a political party who ensures that party members are present for key votes and that they vote in line with party policy. The Wikipedia entry looks pretty good.] Olivia Chow – spent a day on the Hill attempting to do their jobs while using a wheelchair.

Second, important information. This year event is co-sponsored by the Canadian Paraplegic Association as part of Spinal Cord Injury and CPA Awareness Month. While their website refers only to the 2009 event, I’m assuming the relevant information is similar:

Several Members of Parliament and Senators have spent one day in May in a wheelchair. They conducted their normal working day having to make time allowances for simple things like finding wheelchair accessible shuttles and washrooms. They were only allowed to leave their chair while in the House of Commons as there is only one wheelchair accessible spot on the floor for the Parliament Hill event co-sponsor the Honorable Mr. Steven Fletcher.

I think it’s clear that not every disabled person agrees with my assertions about disability simulations, but I have some very strong reasons for describing them they way I do. Some of those reasons are best demonstrated by Olivia Chow’s tweets throughout the day. [You can see this all in context at her twitter. The event took place on May 12. Ms Chow tweeted throughout the day. Ms Leslie also tweeted about her experience, complete with pictures.]

Olivia Chow’s tweets throughout the day really irritate me. She did a series of tweets about the barriers facing wheelchair-users in Ottawa: …lack of curb cuts, bumpy sidewalks, washrooms too small, tables w wide legs…; …hills, doors that don’t open automatically, heavy chairs, elevators shutting too quickly…; Most of these barriers can be overcome by better design, government that understand disability and kind pp willing to help.

Actually, Ms Chow, all over those barriers can be overcome through better design, and while it’s nice if a government “understands” disability, I would really rather they listened to people with disabilities instead.

What Ms Chow’s tweets did is emphasize that, both as an MP and as a former City Councillor for Toronto, she doesn’t trust people with disabilities to actually be telling her the truth about their experiences. Instead, she tweeted
I wish I had this wheelchair experience day while I was a city councillor as a lot of barriers are gov by municipal code.
and Maybe I should work w the Canadian Paraplegic Asso …and challenge councillors to spend a day using wheelchairs.

Actually, Ms Chow, I have a better idea.

Why not challenge the City Councillors, and the MPs, and anyone else you know who has government power to talk to people with disabilities about what their needs are, instead of deciding that spending a day in a wheelchair gives you some special insight? (Especially egregious to me is that the nice people playing dress-up in their wheelchairs for a day could instead have asked Steven Fletcher, the Conservative MP for Charleswood—St. James—Assiniboia, Manitoba, who is a full-time wheelchair user. He might be able to shed some light on issues of accessibility in Ottawa. Mr Fletcher does support this disability simulation, but this doesn’t actually prevent anyone in Parliament from asking him about it anyway.)

It really disappoints me to see the NDP participate in these so-called disability simulations rather than use their power to highlight the voices of actual people with disabilities when discussing their accessibility needs.

Canadians with disabilities campaign constantly for their voice. We don’t need Olivia Chow, or Megan Leslie, to go around for a day tweeting about how inaccessible Ottawa is. We need our elected representatives to actually listen to our concerns. We need them to take those concerns seriously, and present them to their Party – be it NDP, Liberal, Conservative, Bloq, or Green – and to our Government. We need politicians and policy makers to believe that our voices are the ones that define what our accessibility needs are, not a day-long experiment.

I know that going around for a day in a wheelchair gets attention and kudos from the currently non-disabled. I’d rather that attention be offered to the people who continue to be notably absent from our Houses of Government.