All posts by Anna

Recommended Reading for October 14th, 2009

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A bit shorter today – Wednesdays are always busy for me!

In the blogs:

if it wasn’t so necessary, the whole thing would be impossible

# all of us are learning about our own disabilities and each others
# hard to figure out who our allies are. in nonprofit industrial complex, when we make a decision that isn’t popular with allies (like using the word “disabled” as a political word of power in our name), we don’t just lose support, ageist and ableist tactics are used to try and take our power
# this is honestly first time a lot of us have been asked: what do you want? what do you see for yourself & yr community?

In the news:

Saving Alex: A Mother Finally Got Desperately Needed Help for Her Troubled Son — By Having Him Arrested

And here comes the dirty little secret of the so-called juvenile justice system. If you have a seriously mentally ill kid, and you can’t afford treatment, you can have your kid hauled before a judge. And if the judge is particularly empathetic, he or she has the power to get services for your kid.

As long as you’re willing to give up custody of your child to the state of Arizona.

[I find this especially troubling in light of the Hyde case here in Nova Scotia.]

Campaigns:

Follow ADAPT’s twitter feed as they protest for inclusion in health care reform, housing, and the American Dream. [US] Ms CripChick’s got a report.

Dont Write Me Off [UK]:

There are hundreds of thousands of adults with autism in the UK, all of whom have the right to lead a dignified and fulfilling life. Sadly, the majority of people with autism are not getting the support they need to find a job, and many more cannot access the benefits they need to live on.

The research that we carried out among adults with autism showed some worrying statistics. Among the people we contacted, we found that:

– one third are currently without work or benefits
– over half have spent some time without work or benefits, some for as long as 10 years
– just 15% have a full-time job
– but 79% of those on Incapacity Benefit told us that they want to work.

Through this campaign The National Autistic Society is calling on the Government to make the system fair for adults with autism, so that it takes their needs into account at every step.

October is National Disability Awareness Month [US]

“Expectation + Opportunity = Full Participation” is the 2009 theme for National Disability Employment Awareness Month (NDEAM). Sponsored by the Office of Disability Employment Policy, NDEAM highlights the contribution of American workers with disabilities as well as increases awareness of their challenges.

Recommended Reading for October 13, 2009

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In the blogs:

The Ashley Treatment Yet Again:

I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media’s pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled “Ashley Revisited: A Response to Critics” by Douglas Diekema and Norman Fost.

What Kind of Troll am I?:

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired “Not Really Autistic” meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won’t describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

Pride & Prejudice:

Then, when I was 27, I was diagnosed with a mental illness. The doctor said to me (in effect), “You have a deeply flawed mind. It’s screwed up and you’ll have to take this medicine that slows your thinking and makes you forget everything. Learn to write it down.” Talk about a slap in the face. I ripped my clothes and dumped ashes on my head and whined long and loud to God about it. “Why me? Oh Woe Poor Poor Pitiful Me!” Then He said to me (in effect) “Deal with it. It’s what you are.” So I realized that I had no right to be proud of my mind anymore. It was kind of a release, because pride is a heavy burden, even when you’re used to bearing it. All of a sudden, I *wasn’t* better than everyone else, and it became easier to be patient and kind. Which turned into something kind of nice.

Freaks, Hercules and the Hydra [long]

Much has been written about the ambiguous nature of disabled people’s exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film “Freaks” reflects that ambiguity, both from “within-story” and “external” perspectives – most of its cast were “real” circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the “freaks” performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the “Armless Wonder” drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers – who were, as reported here, viciously excluded and discriminated against at the MGM studios – as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there – see below).

Breathtaking to behold: talking back to dismissal:

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

In the news:
Go, read this! It thrills me to no end.

CDC and disabled patients: ‘We’ll work on this together’ [US]

For many women, the inability to stay still prevents them from seeking regular breast cancer screening.

But a health education program is gearing up to encourage woman with physical disabilities to seek medical attention and get regular screenings.

…

“Women with disabilities are getting screened at a less regular rate because there are so many barriers with going to the doctor,” Egensteiner said.

The medical equipment used to perform mammograms also can prove a barrier for women with physical limitations.

Can you collect employee medical info to combat H1N1? [US] [Note: ADA = Americans with Disabilities Act]

Employer groups have been asking the Centers for Disease Control for guidance on whether privacy rules prevent HR from surveying employees about medical info designed to control the spread of swine flu. The CDC has responded, including an approved form for requesting certain types of info.

The CDC has issued a document – “ADA-Compliant Employer Preparedness For the H1N1 Flu Virus.”

Television & Disability: Joan of Arcadia

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This post is part of a series about representations of disability in movies, television shows, and books. They contain spoilers.

[Originally Published in April 2009]

Don and I started watching Joan of Arcadia this week.

Basically, it’s a story about a teen, Joan, who starts to get missions and messages from God, for some mysterious purpose. She’s the middle child of three, with a younger brother, Luke, who is very smart and ignored by his parents, and an older brother, Kevin. Kevin was the golden child, destined to go to uni on a baseball scholarship, before a car accident left him paraplegic 18 months before the show’s start.

Unlike every other show we’ve rented and mainlined, we’re watching this show very slowly because the family dynamics around Kevin’s disability ring painfully true to life.
Continue reading Television & Disability: Joan of Arcadia →

Recommended Reading for October 12, 2009

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Blogs:

The Invisible Crutch:

I’ve decided to build an invisible crutch from things that constitute abled privilege, without repeating too much of what is in McIntosh’s list (so read her list, and substitute “disability” for “color” for many of those things).

1. I can, if I wish, arrange to attend social events without worrying if they are accessible to me.

2. If I am in the company of people that make me uncomfortable, I can easily choose to move elsewhere.

This month’s Disability Blog Carnival will focus on Disability & Work:

Here are some suggested starting points: What work do you do? How’s that going? Do you get paid for it, or is it volunteer work or something you do because you just love it? What blocks you from employment? If you’re employed, what could be better? Do you want a paying job, or do you feel you contribute to society just fine without one? What unpaid work do you do that you value or that others value, for example, emotional support in relationships? If you’re a family member, friend or ally of a person with a disability, what thoughts do you have on work and employment? What’s the employment situation like for PWD in your country or region ?

Health Care & Vulvodynia [U.S. specific]

One of my concerns about health care reform in the US is how it will impact sexual & reproductive health, the domain in which vulvodynia and other pelvic pain conditions are usually classified. As far rights directly related to reproduction and abortion in particular, it’s looking grim. My hope is that patients with pelvic pain conditions will be covered adequately as well. This may not seem like the most pressing issue, since, frequently, sexual health problems will not be directly responsible for death. There are some definite exceptions, notably AIDS, and cancers.

For a few moments, I feel guilty thinking about sexual health in light of other deadly, catastrophic illnesses…

But then I remember that it’s not fair to minimize the very real suffering & misunderstanding that I and other pelvic pain patients go through. And I remember how hard it is to convince others, including doctors, of how very real it is & how difficult it can be to get an effective level of care.

Fat Hatred and Disability on the Cleveland Show:

Sidewalks that are functional for an able bodied person are not necessarily useable to someone in a scooter. Poles that can be easily navigated when they are stuck in the pavement, are not necessarily easy to move around in a scooter. Often curbs are not turned down. Sidewalks are carelessly blocked off by cars hanging out of drive ways, and let’s not forget those who think that they don’t have to shovel their walkway in the winter. My personal favourite are those that believe the scooter rider should always yield when faced with a pedestrian on the sidewalk.

My Use of Ableist Language:

I can’t tell you how many times throughout my life that I have used the phrase “that’s lame” or “don’t be lame” in my life. It’s been a part of my vocabulary since grade school. I wasn’t really aware of the exclusionary and offensive nature of the word until college. That’s when I made the connection between the word “lame” and it’s association to people with mental disabilities.

In the news:

McDonald’s in row over mobility scooter [New Zealand]

McDonald’s is yet to deliver on a promise to say sorry to a woman who was denied service in a drive-thru, because she was on a mobility scooter.

Margaret Todd says she could not squeeze her scooter through the front door of McDonald’s in Blenheim, so had no option but to head round to the drive-thru.

Lucky for us, there’s money to be thrown

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One of the many, many things that bothers me about disability & accessibility is how many of the problems can be solved by throwing money at them.

Let me just give the simplest, bare bones problem that’s on my mind this month.

Once a week, Don attends an appointment that is on the other side of the city from us. He has three possible ways of getting there.

First, he can take public transit. There is one bus from our neighbourhood that gets to where he has to go. (This is an improvement – the bus he takes “directly” only recently became wheelchair accessible.) As anyone with a chronic pain condition will tell you, though, taking the bus anywhere can be extremely painful. The bus drops him off a few blocks from where he needs to be, and he “just” has to navigate the non-existent curb cuts and the broken side walks. Then he gets to reverse the whole process, except the return trip is during rush hour, and wow do people get really pissy when a full-time wheelchair user needs a bus during rush hour.

Second, he can attempt to book Access-A-Bus. In our city, Access-A-Bus must be booked a week in advance. Not 8 days in advance, not 6 days in advance, just seven days in advance. You are not guaranteed a space if there are too many people that day. You will get a phone call two days beforehand if you’re going to be on the bus. You have no control over the return trip, other than that there will be one, and you should let them know when you’ll be available. Although Access-A-Bus is free for users, it’s not the most effective way of getting around.

The third option is that Don takes a taxi. It costs about 25$ one way. The taxi can be pre-booked on either end. It usually comes on time. It takes him exactly where he wants to go, drops him off at the door, and picks him back up at the same location. It just blows through a large-ish wad of cash every time.

Don takes a taxi to this appointment a lot. Unlike a lot of people with disabilities, we have access to family financial support. We can afford that 50$ to make sure Don can get to his appointment on time and in a relative degree of comfort.

For other people we know, the options are much smaller: Be in large amounts of pain while trying to get around the city, or don’t go out at all. (Buying a car is also a “throw money at it” solution. It also assumes you can drive, and have a place to put a car.)

People with disabilities are disproportionately poor. Many also have monthly costs that add up pretty quickly, like medications, purchase and repair of mobility aids, doctor’s appointments, etc. They may need to pay interpreters. Some of them have dietary restrictions or food allergies that require “special” food items, like wheat-free flour or lactose-free milk. A lot are no where near as financially privileged as Don and I are, and cannot afford the expense of a pain-limited trip to the doctor.

A well-funded, well-advertised Access-a-Bus program, along with funding increases to ensure that all buses are wheelchair accessible can make such a difference. But that is not the financial priority of my city at the moment. (Apparently, it’s a high-speed ferry of some sort, and a new hockey arena.)

So, instead, aiming to keep Don’s pain levels as low as possible (he’s recovering from surgery at the moment), we throw money at the problem. And thank our lucky stars that there’s money to be thrown at it.

So many others are not nearly so lucky.