Daily Archives: 2 November, 2009

Friendly Reminder: Disability Carnival!

Just your weekly reminder that we’ll be hosting the 60th Disability Blog Carnival here at FWD/Forward on November 19th.

Our optional theme is Intersectionality – how does identifying as being disabled intersect with being a woman? With being queer? With being of colour? With all of those things?

Of course, feel free to submit other posts you think are related to disability! Don’t be limited by the theme.

Submissions are due no later than November 17th. Earlier = Better! Feel free to email either your own or someone else’s post to carnival@disabledfeminists.com .

Invisible Illness and Disability Bingo 1.0

Author’s note: This is a revised version of a bingo card that I made some time ago.

While I don’t feel like I should be required to justify the lowermost right square, there was some confusion and pretty ooky pushback when I posted version 1 on my own blog. I’ll explain that square anyway, for CMA purposes: I am aware that pot works for many people with chronic pain, and personally have no issue if people other than myself use it. I’m an advocate of finding what works for you; whether it’s a pill, plant, pilates-esque routine, or something else, your course of pain management should be your choice.

What I am referring to with this bingo card — as a whole — is the commonplace, rather irritating tendency of some able-bodied people to suggest — without knowing about the medical history of (or, indeed, much about) the person they are “trying to help” — remedies or treatments that may be totally inappropriate for that person, due to various (personal) reasons. In short, what works for you may not work for me, and vice versa; how I wish I could have articulated this to the folks who have “helpfully suggested” that I smoke pot or obtain other illegal “meds” to help with my pain!

Okay, explanatory note/rant over. Onto the bingo card! I hope you all have your chips ready.

Special thanks to Ouyang for suggesting the “Diet and Exercise!!1” free space.

annaham-iibv1

Text translation: card has white text on a black background. Title (in white) reads, “annaham presents: Invisible Illness Bingo 1.0,” followed by “Now With Straighter Lines” in red:

First Row, Square #1: All that’s keeping you from being healthy is a positive attitude!

First Row, Square #2: My ex/friend/co-worker had that, but he/she was just a hypochondriac.

First Row, Square #3: Maybe if you lost weight/found a man/read The Secret, your problems would be solved.

First Row, Square #4: Why can’t you just suck it up, get out of bed, and find a job like the rest of us?

Second Row, Square #1: Lucky! You get to stay in bed all day.

Second Row, Square #2 (middle square): Free Space/DIET AND EXERCISE!!!11

Second Row, Square #3: You don’t look sick/you’re just complaining too much

Third Row, Square #1: Obviously, you get something out of being sick. Otherwise, you’d get better!

Third Row, Square #2: If I haven’t heard of it, then it doesn’t exist.

Third Row, Square #3: But I went through hard times too, and I got through it. Let’s talk about what a great person I am.

Third Row, Square #4: You have it so much better than some people! Think of the starving children in Africa…

Fourth Row, Square #1: Let go and let God/Power of prayer/God is punishing you

Fourth Row, Square #2: You just want an excuse to be lazy and have people pity you.

Fourth Row, Square #3: Why haven’t you tried crystals/vitamins/other dubious “cure”? IT REALLY WORKS!!!

Fourth Row, Square #4: Smoke pot/take illegal drugs. It will totally take care of your pain, man!

Also posted at Ham.Blog

Recommended Reading for November 2

It’s my favourite Monday of the year! The clocks fell back an hour for most of Canada last night so I feel like I’m up extra early and have lots of time to accomplish things today!

Not that this actually works out in practice.

What I Want To Write To Abled-People But Don’t:

How do you talk to a disabled person?

Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don’t know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don’t mean themselves. I’ve found what they said to be true. My suggestion is to at least try, because often you’ll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone–about the kids’ school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don’t know me, make the same small talk with me as you would with anyone. If you already know me, I’m truly the same person. If you’re feeling awkward about wheelchair use, work on overcoming that; I don’t feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won’t make eye contact, say hello, or speak to me anymore. If you’re so concerned that you’ll be rude that you’ll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:

The Knitting Community Has Assholes Too:

So I posted an innocuous, friendly sort of post in the large and voluble lace-knitting forum on Yahoo about knitters with disabilities which keep them from reading charted patterns. Correction–the knitters themselves had brought up their experiences and frustrations, and after some back-and-forth on the subject, I thought, “Hey, let’s see if anyone’s willing to send polite notes to publishers, en masse, to bring the problem to publishers’ attention.” Cos hey, I love my charts and I find following written instructions really difficult, but that doesn’t mean that knitters who can’t read charts due to a disability should have to miss out on the fun.

Well goddamn, you would not believe the sheer hostility that erupted. One woman in particular posted a rambling screed about how her mother had polio, but “overcame” her disability and got angry when people offered to help her; she then claimed that the knitting world didn’t need to be “fixed,” and that she was being discriminated against. I’m not sure how anyone is discriminating against this able-bodied person; did a brigade of visually-impaired and neuroatypical knitters march up to her house and forcibly steal her charted patterns? (Given how hostile her response was, I think I’d enjoy seeing that!) Language about “preferences” (a very different thing from a disability) and defensiveness about how it’s okay to like charts proliferated in the discussion. If suggesting that all knitters should get to enjoy their craft is such an offensive idea–if the idea of someone else sharing the dignity means, to these people, that there’s suddenly not enough dignity to go around, as if dignity was some kind of limited-quantity resource–then yes, the knitting world does need fixing. Then again, the world in general could use a little fixing, by those standards.

Denise Handicapped:

Last week on Curb Your Enthusiasm, Larry meets a woman named Denise in a coffee shop. They flirt and Larry asks her out. Larry is excited about it… until he sees Denise is in a wheelchair.

Larry is clearly repulsed by the idea of going out with Denise but as he tells his friend Jeff, “I was stuck. I didn’t want her to think I was a bad guy.” Jeff tries to reassure Larry that it’ll be okay to date a woman in a wheelchair by saying, “It’s an adventure, it’s an adventure.” Yeah, Larry, dating a woman who can’t walk is like a trip to see the freaky disabled woman in the sideshow at the circus. Who knows, she may even get frisky with ya. That’ll be adventurous, for sure.

So they go on their date. As Larry pushes Denise up to the restaurant’s entrance he says, “If we’re going to have a second date, you’re going to have to get an electric chair. I’m not doing this again.” Cue symphony of tiny violins.

In the news:

House bill likely to include long-term health care [US]

House health care legislation expected within days is likely to include a new long-term care insurance program to help seniors and disabled people stay out of nursing homes, senior Democrats say.

The voluntary program would begin to close a gap in the social safety net overlooked in the broader health care debate, but it must overcome objections from insurance companies that sell long-term care coverage and from fiscal conservatives.

Female veterans complain of less pain than men [Warning: This is a mainstream media discussion of a medical report.]

Female veterans of the Iraq and Afghanistan wars are less likely to complain of painful physical conditions than their male counterparts, according to a U.S. study.

The study of more than 91,000 U.S. veterans runs counter to what is seen in the general population where women typically show higher rates of chronic pain conditions, including migraines, fibromyalgia and persistent abdominal pain.

The Invisible Disability

Moderatrix Note: Originally posted at random babble… on 15 September 2009.  At the time the movie was just out over the previous summer.

Because of the new movie that is out I am currently re-reading Jodi Piccoult’s My Sister’s Keeper.  I read it about five years ago, but I read that the screenwriter for the movie changed the ending (why do we do these things, Hollywood?  The movie ending sounds awful, but more on that after I see it), so I thought I would brush up so that my memory is fresh when I see the movie.

There is one character in the book, Campbell Alexander, who is a lawyer who agrees to take Anna’s (the central protagonist) case for medical emancipation from her parents, pro bono.  Alexander has a service dog that assists him.  The need for the dog becomes something of a running joke throughout the book, because everyone assumes that if he has a service dog he must be blind, which he is not.  He cracks a series of jokes, including “I have an iron lung, and the dog keeps away from magnets” to avoid directly answering any questions.  It isn’t until the end of the book that you find out why he actually needs the dog (but re-reading this I find that there are many fairly blatant clues to the acute reader), and no I will not tell you, just in case it happens to be omitted from the movie. I am a jerk like that.  =)  While Campbell Alexander’s situation provides a good many of moments to laugh in a book that is incredibly tear jerking, his situation is all too familiar.

See, the reason Alexander feels the need to crack jokes and be sarcastic is because his need for the dog, named Judge (…ha ha!  I C wut U did there!) is constantly questioned.  Every time he walks into a restaurant, a hospital, a public building and despite the fact that Judge is described as wearing a service dog’s harness he is told that dogs are not allowed.  When he mentions that Judge is a service dog the common response is “But you aren’t blind!”.  Campbell Alexander’s reason for needing a service dog isn’t obvious to the casual person on the street, but his need, his disability, is just as real in the world created in the book.  But were he a real live person living in the world today his disability would be met w/ the same types of skepticism.

Even though it is becoming more common to be diagnosed with what were previously thought to not be real conditions the idea of an Invisible Disability is still foreign to most people.  People living with conditions such as Fibromyalgia, Rheumatoid Arthritis, Sarcoidosis, any number of non-neurotypical disorders, or Lupus, just to name a few, go through chunks of their lives never showing visible signs of the often constant and frequently overwhelming pain that sometimes limits their lives.  I know that when I am on the subway in Seoul I am given odd looks if I use a seat that is left open for PWDs, even though my joints and legs hurt so much that standing brings tears to my eyes, because no one can see my pain or know my need.

It is easy to assume looking at a person that they are completely able-bodied.  TAB has become the norm to society at large, and in order to be anything outside of the default you have to display physical signs of your difference.  That is what our society today demands.  A wheelchair.  A handicapped parking plate.  A cane or seeing-eye dog.  The lack of these markers can mean the difference between accessibility with independence, and limitation.  My need for accessibility isn’t obvious unless I point it out, but it is real.  It’s the reason I have to ask if the single’s lodging on a base has elevators or insist on staying in the main building which does.  It’s the reason that some people get angry when limited access forces them off of their scooter, in great pain, while standers by watch and assume that the person is faking in the first place.

The presumption that a disability must come with a big obvious sign so that other people can identify them is part of the problem to making the world outside our homes accessible to everyone.  It isn’t the job of PWDs to make their conditions obvious to you or to explain themselves to the AB-TAB crowd, but it should be the responsibility of the public and society to make sure that PWDs can access the rest of the world, which is a step, for many, to independent living.