Regarding the “tender point” test referred to in this installment : In 2010, the American College of Rheumatology (ACR) revised the diagnostic criteria for fibromyalgia so that rheumatological exams do not utilize the “tender point” test. The new diagnostic criteria include a Widespread Pain Index (WPI) and Symptom Severity (SS) Scale.
Here is the second installment of my theoretical/graphic memoir on disability, visibility, and gender! Previously: Part 1
Image descriptions can be found below the .jpgs; click the images for larger versions. Should you need more background on the “Supercrip” trope, a piece that I wrote for Bitch on the topic (all the way back in 2009) is cited on page 7.
When it comes to actually sitting down and writing, there seems to always be something mental or physical that’s in my way. I suck at poetry, so no writing poetry for me, even if it’s just two or three lines. Short stories? I am terrible at those, too, although I occasionally manage to write one and then forget about it, only to find it years later stuffed away in one of the 25 or so computer desktop folders that I’ve created for my writing. I tried writing a sci-fi novel once, starting when I was 13, stuck to it for a good two years, and only gave up entirely when my very own case of major depressive disorder in high school basically sucked that one out of me.
The 87th Academy Awards are this weekend, so it’s a good time to talk about a familiar old friend: Oscarbait. Three films this year were definitely having a go at taking home a gold statuette via one of the most time-honoured traditions of Hollywood: Cripping up. On a routine basis, one or more actors dons disability for the year, usually in a film that critics refer to as ‘inspirational,’ ‘heartwarming,’ and ‘profound.’
This year, The Theory of Everything, Still Alice, and Cake all gunned for Oscar gold and other awards, with Eddie Redmayne, Julianne Moore, and Jennifer Aniston playing disabled characters for the big screen. None of these actors has publicly identified as disabled, while all three are being taken as authorities on disability — after all, they’ve done a bit of research and it can’t be that difficult. Moreover, the fact that these kinds of roles set actors up for awards hasn’t escaped them, rest assured.
Note: This piece was originally written in 2006. I was diagnosed with fibromyalgia a few months after writing it.
I am grinding my teeth.
I know instinctively that I shouldn’t; it makes my jaw hurt and can often lead to a loathsome headache, but right now I have no other outlet.
I sit hunched over in an uncomfortable plastic chair. I’m dressed in old jeans and a sweatshirt that could use a washing, scanning the room like a hungry, angry buzzard on the lookout for a freshly dead creature upon which to feast. I am just that grizzled, as I have been for the three months I’ve been waiting for this appointment.
I started experiencing overwhelming fatigue and joint pain five months prior out of nowhere, and when I reached two months of feeling like I’d been hit by an SUV from the time I woke up in the morning until I went to bed every night, I went to my GP and asked if she could figure out what was wrong. Since a 20-year old presenting with unexplained pain and fatigue was out of her wheelhouse clinically, I was referred to a neurologist. Of course, he had a three-month waiting list.
In its simplest form, accessibility is usually defined as changes to the built environment designed to enable full participation by and inclusion of disabled people . Ramps and grab bars are common examples, with accessibility also extending to the presentation of materials in multiple formats to meet varying needs. Braille and sign language, for example, are provided for blind and vision-impaired people as well as D/deaf and hard of hearing people respectively. Likewise, accessibility can include modification of materials and curricula to accommodate disabled students, the provision of quiet rooms at conferences for autistic attendees, and other measures intended to make the environment more pleasant and functional for people with cognitive, intellectual, and developmental impairments.
These are measures that I term “physical access” both in my work and for the purpose of this essay. They are all intended to create more welcoming environments, and in some cases are required by law; the Americans with Disabilities Act (ADA) in the United States, for example, has stringent requirements for new public construction mandating features like ramps and accessible bathrooms in order to ensure equal access for disabled people. Yet, over 20 years after the passage of the ADA, compliance rates are still extremely low.
The fact that a law had to be passed in the first place is an illustration of ableism and how it functions in society: that people don’t think disabled people should automatically have access to all the same public spaces nondisabled people do is striking. And the surprise at the amount of agitation from disability activists on the subject is notable as well, with mainstream society behaving as though this is something new. The disability rights movement has been active for over 100 years, lobbying for the rights of disabled factory workers in the Industrial Revolution, returning soldiers in the First and Second World Wars, and more. Disabled organizers participated in the upsurge of civil disobedience and protests during the Civil Rights Movement, and fought hard for the passage of the ADA and similar legislation as well as court verdicts like Olmstead versus L.C. . Their fight has always been one for full access and inclusion.