Daily Archives: 3 December, 2009

Disability 101: Treatment Suggestions and Why They Are Not a Good Idea

101, autonomy, blaming, bodies, identity, life changes, normality, resistance, shaming, social attitudes

I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!

Many people who do not live with chronic health issues, perhaps in a spirit of wanting to help those they know who are in pain, disabled, chronically ill, or affected by a neurological or mental health condition, may suggest different treatments or ways that they believe the person with the condition, illness or disability should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get…well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD, chronically ill person, person with a mental health condition, or non-neurotypical person, namely:

…that they cannot be trusted to manage their own health, disability/disabilities, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill or still have their condition; the treatments that they have worked so hard to find, additionally,  most likely work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “well being,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of people with mental health conditions, the non-neurotypical, persons with disabilities and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the individual’s humanity. Unless you are a professional, doctor or other specialist working with the person who has one of these conditions, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the individual should be undergoing to yourself.

…that you are frustrated by the individual’s inability to “get better.” You may not say or even think this outright, but in some cases, actions speak louder than words.

…that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the individual many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness, mental health conditions, non-neurotypicality and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the affected person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you–an able-bodied person–feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).

In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, health conditions, mental health conditions, and neurological conditions. For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many non-able people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities, chronic health conditions, non-neurotypicality, or mental health conditions.

An earlier version of this piece was posted at Faces of Fibro on July 6, 2009.

Recommended Reading for December 3

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Disableism Impacts Families

This choice that is being forced upon me is impossible. I must either tolerate physical pain at the hockey arena or emotional abuse at the dojo, if I want to be a part of my child’s life. It’s ironic that disabled mothers are often viewed as incompetent but where is the discourse surrounding the ways in which our parenting often occurs under extremely difficult situations? I suppose, of all the people on the planet that Destruction and his brother Mayhem provide the best reason for me to want to rise above, but the constant pain requires more of a super human effort than I believe that I am capable of.

Murphy’s Law And Disability: The Week From Hell

Normally, we get by. We get by pretty well. Provided we stick with the diet restrictions, usually we just switch off when one is a bit more able to get things done than the other. Chores basically go to whomever is in less pain at the time, or in less of a bad mental state or who can actually do them reliably without issue (like me defocusing and being unable to even read a recipe because I can’t keep on it). Usually even when the chronic shit we deal with is flaring the other one is just dealing with the baseline of the chronic shit for them, and the other disabilities coming up are all spread out over time.

Not this week though.

This week was the perfect storm of flare ups, semi chronic appearances and stress induced aggravations of all of the various things we deal with on a regular basis. While my partner fought off a pain flare, struggling just to walk, I was nailed with a “Richter 7? migraine.

Accessibility and Gaming: Randomizers

Most traditional six-sided dice may be tactile enough that someone who can’t see could feel the result. There are also special “Braille dice” available for not that much more than premium gaming dice; they’re more properly called tactile dice since the faces are traditional die pips and not true Braille numbers.

So, blind players can probably get their hands on accessible d6s, but to the best of my knowledge there are no tactile dice made for any other types of dice. Champions, anyone?

The wrong message – still

I don’t know who dreamed up the concept of “disability simulations” but they have been around for a mighty long time. My lifelong friend, Michael A. Winter, now the Director of Civil Rights for the U.S. Department of Transportation, first exposed me to the shameful practice. Michael and I were classmates at a segregated school for crips and met in 6th grade. We attended the same university. As undergrads, Michael formed a group called Wheelchair Action. When the Rehabilitation Institute at Southern Illinois University sponsored a disability simulation, Michael and members of his group stormed into the classroom and tried in vain to halt the fiasco.

Professionals who are nondisabled rarely stop to listen to the people who live with disabilities. I was proud of Michael for trying to get people to understand how destructive these simulations can be.

What Makes A Good Doctor?

Dean Tom Marrie is interested in hearing what kinds of qualities people value most in their family physician or specialist. What do you appreciate about your doctor? What do you think physicians of the future will need that might not be taught at med school today?

Guest Post: Book Review: Everything Beautiful

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Karen Healey is an able-bodied author of young adult literature and a PhD candidate at the University of Melbourne. You can read more of her musings on reading, baking, and social justice at her blog, Attention Rebellious Jezebels.

Everything Beautiful, Simmone Howell. Pan.

I am the maniac behind the wheel of a stolen dune buggy. Dylan Luck is at my side. We are tearing up the desert, searching for proof of God.

Riley Rose’s mother died two years ago, when she was fourteen, and everything went to hell. Now her father and her new stepmother have sent her to a week-long camp at Sprit Ranch, AKA the Palace of Suckdom.

I decided I would pack only frivolous things: eyelash curlers and costume jewellery and little jars of antipasto. If I had to go to Christian camp then I would go as a plague. I would be more like Chloe: outrageous and obnoxious — call me a plus-size glass of sin! It wasn’t until Melbourne was wavering behind us like a bad watercolour that reality hit. As the kilometres ticked I sank into my seat and practiced holding my breath. On a silo just past Horsham someone had painted an escape button. ESC – ten feet high against a concrete sky. I almost asked Dad to stop the car so I could press it.

There, she meets Dylan, who used to be a bullying jackass before the accident that cost the use of his legs. Now he’s just sort of a jackass, and his old Bible Camp friends don’t seem to know how to act around him in the chair.

Craig came forward. “Here you go, dude.” He clamped a hand on Dylan’s shoulder and handed him a shiny bundle. Dylan was slow to unfold it, too slow for Craig, who moved across and shook it out, and held it up for display. It was a vest identical to his. Craig draped it over Dylan’s shoulders and announced: “So this year there’s two Youth Leaders!” … I whistled and threw my lavender sprigs at the stage. A flower landed on Dylan’s chest. He watched it fall to his lap and then he picked it up. I noticed his cross then: thick and silver, hanging on a thin leather string. As he held the sprig of lavender, his face changed and I had a sudden flash that he looked on the outside how I felt on the inside: Lost. Moody. Superior. Charged.

Dylan smelled the flower and stared straight at me. Then he put it in his mouth and ate it.

HIJINKS ENSUE. Hijinks include [minor spoilers!] (skip)
Daring Escapes, Heartfelt Confessions, makeovers, loveable doped-up friends, the theft of a shroud, Mean (Christian) Girls who turn out to be real girls, and one of the sweetest, hottest, most beautiful love scenes I’ve read anywhere

I LOVE this book. I love that the two main characters have bodies deemed unacceptable by Western standards – Dylan because he’s a wheelchair user, Riley because she’s fat – and yet are developed as a romantic and sexy pair. I love that Dylan is not a Ministering Angel Who Inspires Us All, but a complex person who’s a moody jerk a lot of the time, but charming and wickedly entertaining a lot of the rest. Howell manages to pack a good deal of wheelchair etiquette and disability awareness into the narrative, but not preachily; mostly it comes as Dylan sarcastically noting something that Riley’s never had to consider before.

In fact, every person in this book, however quickly drawn, comes across as a portrait, not a caricature. Characterisation is Howell’s great strength. No! It’s dialogue. No! It’s humour. No! It’s pace.

Wait, maybe it’s description:

The sun dipped. The sky became the near-night blue of shadows and stolen moments. Now the ground was firmer. The land had flattened out and Dylan’s tracks were no longer visible. Here and there, I found little reflecting pools, and then at last I saw one great big one. The lake was a giant mirror reflecting a crazy-paving of tree and sky. Up ahead I saw a monster gum tree with wandering roots that looked like they’d waded right into the water and thought, fuck it, let’s stop here. Dylan must have thought the same thing. He was in his chair, facing the water, a little way back from the edge.

Everything Beautiful is. Highly recommended. I don’t know where it’s available outside Australia, but the Book Depository has it here, although I have Thoughts on that particular cover.

Jetstar, AGAIN – this time they refused passage to woman with guide dog

accessibility

[Jetstar is a discount airline in Australia.]

Further to incidents where Jetstar expected Kurt Fearnley to cool his heels, completely dependent, in a non-self-propellable aisle chair for 90 minutes between checkin and boarding (“Let us drive the wheelchair! It’s safer!), and another incident where Trevor Carroll, being pushed in a chair by airline staff (after they broke his walking frame), was tipped on his head into a gutter (“No really, safer!”): Jetstar have gone the extra mile this week – refusing passage to a guide dog, then shouting at the customer.

The Age reports:

Blind pair says Jetstar refused guide dog

Two weeks ago, Glen Bracegirdle, who is significantly visually impaired but manages without a guide dog, called Jetstar’s call centre to book flights for himself and his partner, Kathryn Beaton. Ms Beaton requires the assistance of Prince, a four-year-old black labrador guide dog.

He said he explained that they would need to fly with the guide dog, at which point the clerk told him: ”No dogs, no dogs, no dogs.”

When he attempted to explain that the dog was trained by Guide Dogs Victoria, the clerk refused to budge*.

He said he was later cut off by a manager who became ”quite loud and angry”.

[*Jetstar’s written policies specifically note that dogs trained by Guide Dogs Victoria, among other trainers, are eligible to fly.]

Jetstar claimed this was a “breakdown in communication”, and once again claimed that they carry hundreds of passengers with disabilities each week without incident.

The couple have sent a complaint to the Human Rights Commission.