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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.
by Laurie Toby Edison and Debbie Notkin
Laurie: I blog with Debbie Notkin at “Body Impolitic” where we talk about body image issues in the broadest sense. I’m the mother of two daughters and I live in the Mission in San Francisco. I’ve published two books of my photographs: Women En Large: Images of Fat Nudes (edited and text by Debbie Notkin) and Familiar Men: A Book of Nudes (edited by Debbie Notkin, text by Debbie Notkin and Richard F. Dutcher).
Debbie: Along with my work with Laurie, I’ve has been an in-house and consulting editor of science fiction and fantasy at Tor Books. I help organize WisCon, the world’s first feminist science fiction convention,and I’m chair of the motherboard of the James Tiptree, Jr. Award, supporting science fiction and fantasy that explore and expand gender. My day job is as a contracts manager for a nonfiction publishing company.
We were very pleased to be invited to blog about the intersection between aging and disability, in part because we think it’s a smaller intersection than is generally perceived.
We are 67 and 58, respectively, and both of us are able-bodied, and active. Not because “70 is the new 50” but because our bodies work just fine.
The stereotypical intersection between aging and disability is the cultural expectation that they are the same thing. Whether people are saying “After 40, it’s patch, patch, patch” or just looking surprised if a woman over 50 lifts a 50-pound box, the common assumption is that age and disability are irretrievably linked, just as youth and ability are perceived to be irretrievably linked. While 75-year-old marathon runners and charmingly fragile disabled teenagers both show up as role models, old people who walk to the grocery store and people in their young 20s who are frequently unable to leave their homes because of chronic pain are equally invisible.
Living in our bodies is a day-by-day, minute-by-minute experience. In our experience, and the experience of our friends who are our ages or older, aging does entail additional maintenance time and energy. More small things about our bodies need attention than they did 25 years ago. We go to doctors more often. We have more routine tests. We have excellent memories, but we lose words more often than we used to.
These things, however, are not disabilities. Conflating age and disability is not only dishonest about the realities of aging, it is also disrespectful of the realities of disability. We can both go where we want to go, and get in to the buildings or transit vehicles when we get there. Neither of us is in the kind of pain (physical or mental) that keeps us from living able-bodied lives. To describe our minor aging issues as disabling would be to undercut and undervalue the real disabilities that people live with every day.
At the same time, the stigma of aging (which is partially fear of death and partially the culture’s definition that beauty must be youthful) puts a disturbing spin on diseases and conditions which are associated with aging. If someone over 60 has mild to moderate arthritis, almost everyone (including her) will view it as evidence of her body’s degeneration and eventual demise, while if someone under 40 has mild to moderate arthritis, it will be just something she has to live with, and not evidence that she’s falling apart. This distinction is so endemic in the culture that one of the major medical problems with aging is that people expect their aches and pains to be permanent, and thus don’t address them. One reason people disguise some of the things that happen to them as they age, just people who can sometimes disguise their disabilities, is that we are treated so differently in the world if we tell the truth about our bodies.
As fat activists, we’ve known for years that a fat person should always ask a doctor “What do you advise your thin patients with this condition?” Similarly, an older person should always ask a doctor, “What do you advise your young patients with this condition?”
Do disabled people experience the flip side of this stigma? Not being disabled ourselves, we can’t speak to that, but readers of this blog surely can. We’d like to know: Does being disabled sometimes get transformed into being treated as if you were aging? And if so, how does that work?
It comes down to rejecting stereotypes: the two stereotypes of aging are the ever-increasing decrepitude and incapacity on the one hand and the cheerful, active grandparents in the Depends commercials on the other hand. Like stereotypes of disability, or of women, or of people of color, these are not true. The truth is much more layered, complicated, and different for every individual.
About thetroubleis: Thetroubleis is a 19 year old with bipolar disorder, social anxiety disorder, generalized anxiety disorder and dyspraxia. She’s a WOC who is also a transracial adoptee and pansexual/queer, depending on how she’s feeling that day. She enjoys knitting, video games and is a music geek.
How I came to path of getting a service dog* was a long, strange journey. My experiences are my own and by no means represent the entire service dog community. My country and state laws are most likely different from some readers as well, so I’m only writing from my own perspective.
I’ve been bipolar since I was child along with my other disabilities, so I don’t remember being normal. I’ve always just been me. I am my normal. Although my other illnesses were diagnosed latter, looking back i can see how they impacted my child and now, how they affect my adulthood.
In junior year of high school, I was reading up on dog training, because I thought that might be something I’d want to do as a job. I’ve always like dogs, they don’t judge me and my Samoyed Kesha loved me unconditionally. One day I came across the topic of service dogs and was so amazed by them. I put the thought of them away in my mind until I read across the concept of psychiatric servicee dogs.
At first, I was skeptical. How could I dog help someone like me? I thought that service dogs were only for people with “real” disabilities. My mental illness wasn’t disabling, was it? Just because I couldn’t go out in public alone or deal with crowds didn’t mean I was disabled. Loud noises and lighting hurting and causing melt down was just part of who I was. It took me some time to to come around to the idea.
When I realized all the way in which I dog could help me, I read and read. Anything with even a small mention of service dogs was worth reading to me. I came up with a list of tasks based on my symtoms and things a dog could do the help them. I was ready.
Sadly, service dogs, especially types that are very new are expense. Psychiatric service dog are pretty new on the scene and the one program I had found in my state that trained them had closed. I was crushed. I tried to brush it off, because I didn’t have the money for a dog anyway. That was about to change.
I headed off to my first year of college and did badly after being cut off from my medication for a time, along with personal problems. I was called back home several times, because my parents had decided to sue my former high school for discriminating against me. They choose to settle.
My money problems were solved! Now where was I going to get a dog? I know it was best to buy from a breeder with service dog lines because even though some shelter and rescue dogs work out as service dogs, the chances of them washing out is much higher. I knew I’d have a hard time with my dog washing out, so I wanted to lower that chance as much as possible.
I started hanging out on Dogster.com and met a psychiatric service dog handler named Veronica who shared a disability with me. She was using a pit bull Weimriner mix as a service dog, but the dog was getting older and had to retire. She had picked a Standard Poodle to train as her next service dog and although I wasn’t partial to the breed, I went and checked out the breeder.
He was so nice. His wife friend were both service dog users, so he knew so much. We talked about what I was looking for in a dog and what tasks I wanted done. He said he thought I’d be a great home for one of his puppies and I put down a deposit and waited.
Sadly, with my puppy being in California and me and Maine, it was hard to coordinate a proper short flight for the puppy. He was already going to keep Figaro for a few extra weeks to get him used to the crate, but I ended up not meeting my dear boy until he was 4 months old. We ended up driving all the way to Boston to get him, but it was the best, safest flight for him, so I didn’t mind.
I had to finish up at school before we could commence training, so he went home with my parents, three hours away. When I finally came home, he took right to me. He’s was lovely boy, very intent on pleasing me. Teaching him was pretty easy, even for a novice like me.
I found another service dog school, one that helped owners train their own dogs. We signed right up. They have been an invaluable resource and i couldn’t to all I have without them.
Figaro and I were a team, the very best of friends. I spent that summer just bonding with him and the best thing happened. He started to alert to my panic attacks before they went full blown. I had been hoping he would, but hadn’t expected it. When I realized what was going on, I was ecstatic. He had his other tasks to make him a service dog, but this, the alerting was so helpful. My bipolar disorder is extremely rapid cycling and he started to alert me to that, as well as hair plucking. I hadn’t fully realized what a smart dog he was.
This partnership was the best thing I have ever done for me. I still take my pills and still go to see my doctors, but having a service dog in training is a big help. Although Figaro meets the legal definition of service dog, I only call him such in legal situations because his public access behavior isn’t where I would like it right now. Thus, he isn’t with me in public unless it’s a training exercise. That’s okay though, because I stay home for the most part. It’s nice and I have to admit having something need me is pretty great too. It’s good to not fail at something, to have purpose.
Next time, I’ll be writing about the public and service dog community.
* I’m using the United States of America’s of service dog and the state of Maine’s definition of service dog in this post. The USA’s definition is as follows:
“Service animal means any guide dog, signal dog, or other animal individually trained to do work or perform tasks for the benefit of an individual with a disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals with impaired hearing to intruders or sounds, providing minimal protection or rescue work, pulling a wheelchair, or fetching dropped items.”
The state of Maine’s definition is
“Service animal” means:
A. Any animal that has been determined necessary to mitigate the effects of a physical or mental disability by a physician, psychologist, physician’s assistant, nurse practitioner or licensed social worker; or
B. Any animal individually trained to do work or perform tasks for the benefit of an individual with a physical or mental disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals who are deaf or hard of hearing to intruders or sounds, providing reasonable protection or rescue work, pulling a wheelchair or fetching dropped items.
CapriUni has cerebral palsy. She grew up with, and alongside the Disability Rights movement. She was among the first of her generation to be mainstreamed in education, in starting in the late 1960s, she completed the Masters of Arts program in Creative Writing at SUNY Stony Brook in 1991. And she has been a regular participant in the theatrical and literary endeavor known as The Art Garden for many years. She currently lives in Virginia, where she spends much of her time geeking out on her DreamWidth Journal over the topics of language, disability rights, and general silliness, but not necessarily in that order.
This post wanders down a primrose path of links — or maybe it makes a daisy chain of links (maybe the all those flowers are fertilized by the BS the essays in these links complain about).
Almost a year ago, I watched again, for the first time in nearly thirty years, Episode Two of Genesis of the Daleks (the one where we first see, and hear, Davros) and wrote this review: I know that this episode predates this PC-ness by about ten years, but still. I tried to articulate how painfully ableist Davros is/was (it might have helped if I’d had the word “ableist” in my vocabulary, back then). But the discussion thread wandered off into Nazism, racism, anti-Semitism, and the internalization of oppression by the oppressed — all are important topics, but Davros’s disability ended up being treated (even by me, woe) as a secondary metaphor for some other issue, and not as an important attribute in its own right (which is another of my long-time pet peeves).
Then, earlier this week, troubleinchina watched Genesis of the Daleks for the first time, and she wrote this review: Davros is not a physically handicapped scientist overcoming his “shortcomings” through technology (the link she posted in that review, btw, to an essay about the cybermen, has been taken down by the author).
In reply to that review, Goldfish (the host of “Blogging Against Disablism Day”) posted this: It would be better if we were represented as a great variety of characters, but Davros did at least have some … spirit.
And she posted this link (from the BBC’s official Disability Culture Blog: “Ouch!”): ReTARDIS: Doctor Who and Disability (written on the eve of NewWho, and expressing the hope that RTD would help Who get beyond its old biases; shall we have a moment of silence for our dashed expectations?).
And finally, I’ve come to the end of my primrose path. For there is one paragraph in this last blog essay clarified for me why I preferred the Daleks before they had Davros as their single, twisted, “Creator”:
To cut a long story short, Davros foresaw that his entire race, the Kaleds, were slowly turning into slimy, green blobs. Being a wheelchair user himself, his solution to this problem was to build mobility aids for everyone to travel around in – a.k.a. the Dalek machines. Now you’ve got to admit, turning your entire race into wheelchair users is quite an extreme way to bring about disability equality!
I realized, when I read this, that I was (partially) incorrect in my original analysis, last June. What’s really promblematic about Davros is not (so much) that his “spiritual disfunction manifests as physical disfunction,” but that he diliberately creates the Daleks to be more disabled than he is. He deliberately erases their capability for empathy and compassion. He expects them to be obedient to his every command, and to be grateful to him, as their creator and their “father.” If Davros’s plans unfolded the way he dreamt them up, he’d be the most able-bodied (comparitively) “Emperor of Skaro.”
So, with Davros in the picture, the Dalek mythos only perpetuates and reinforces the hierarchy of Ability and Personhood. The more able you are, the more you’re a “real” person. If you’re disabled, your role in life is to be obediant and grateful, and the more “severe” your disability is, the more passive and grateful you’re expected to be.
But pre-Davros, in the First and Second Doctor’s eras, the Daleks had created their machine casings over time, and under their own initiative. In the Peter Cushing movie versions of William Hartnell’s Dalek stories (thanks again, gordon_r_d!), the Dalek city is full of color, and art for art’s sake. Even though they’re still evil, they’re portrayed as having a complete culture, and being complete people. So yeah, I find the pre-Davros Daleks to be more interesting.
As for the argument that Terry Nation had to create Davros to give the Daleks some unique history compared to the Cybermen, I’d say that both the Cybermen and Daleks represent the abject fear that the Privileged have of the Oppressed:
“They Hate Us!! And if We Give Them Any Freedom, They Will Bring Us Down to Their Level!!”
The Daleks and Cybermen are “mechanized” selves, who have gradually lost their Personhood as they gradually lost their physical abilities, and compensated for their weakness with technology. This, in itself, makes them morally suspect, at best. What makes them evil is their desire to inflict their reality on the rest of us, “robbing us of our humanity.”
Other modern sci-fi examples of this trope would be, I think, Hitchcock’s The Birds (where humans are punished by the avians for our species-based privilege), and Franklin J. Schaffner’s (director) Planet of the Apes (again, with species privelege, with added thinly disguised race privilege). But this trope goes back much further than the genre of Sci-fi, if you consider the ancient (patriarchal) Greeks’ fear of, and fascination with, the Amazons, and what they did to men.
This fear and fascination probably arises out of the subconscious knowledge that:
- privilege is arbitrary and more a matter of luck than innate goodness, and
- the acts committed via this privilege are unjust, but
- the privilege-holders are so dependent on the power of privilege for their way of life that they equate letting it go with Death.
And of course, this fear completely distorts reality. Birds have no desire to wipe out humans as a species. Nor do Apes wish to own human slaves. Women don’t want to castrate and enslave men.
And the disabled have no desire to inflict their impairments on the able-bodied. Christopher Reeve’s advocacy for “The Cure” made me squrim, but I took no pleasure in his suffering. I was simply distressed when his advocacy, and the celebrity status that fuelled it, drowned out nearly all discussions of civil rights and equality.
[I’ve been writing this post on and off (mostly on) for nearly six hours, now (I thought it was going to be a quickie; I didn’t expect it to be so hard to put into words). It’s time I stopped. Here’s my conclusion:]
Davros is a painful character for me to watch because he represents the fear that the Disabled are full of hatred — both self-loathing and hatred of the able-bodied, and is another example of the fearful trope:
“They Hate Us!! And if We Give Them Any Freedom, They Will Bring Us Down to Their Level!!”
(So We better get Them, before They get Us).
I don’t want to bring you down, able-bodied white men, staring at me from the bed of your pick-up truck,* please don’t stare at me with such virulent hatred.
*I’m remembering an actual time when I was leaving the grocery store with Audrey, my aide. This was when I had the old van, with the slooow wheelchair lift, and I was manuevering to get onto the lift. Meanwhile, there were four red-necky-type white guys hanging out in their truck in the next parking space over. And they were staring at me with such angry expressions, I couldn’t look them in the eye. If I’d been alone, I would have feared for my safety. Yes, this was one moment out of my lifetime, and it was atypical in its extremity. But it still sticks in my mind, and it’s still painful.
ETA November 29: I’m temporarily turning comments off on this post because it’s become some sort of magnet for very strange and repetitive spam. I’ll turn them back on in the future. If you come across this and want to make a comment, please let the mods know.
Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. 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.
Sasha_feather is a science fiction/fantasy fan and anti-oppression activist. She is a contributor to Access Fandom
Image: Dr. Kerry Weaver from the US television show ‘ER’, a white woman using a forearm crutch
Has anyone ever told you that you are using something as a crutch? Have you ever used this metaphor yourself as a pejorative?
What do people mean when they use this metaphor?
The metaphor implies that crutches are universally bad and that they prevent the user from moving onto the next stage of development.
There are underlying messages within this attitude that one should rely upon the self and not be using outside help or tools to deal with problems. All of this is ableist, and falls in line with similar prejudices against medications. If you cannot support yourself, well then, there must be something morally wrong with you: this is the message of our ableist society.
Crutches are assistive technology; they are tools. While it is true that tools can sometimes cause harm, tools are not essentially bad. I think most people would agree that tools are good things. Often tools such as crutches are the products of many years of innovation, design, engineering, and human ingenuity. People with disabilities often rely on tools more than fully able-bodied people do to help us navigate and live in the world. Crutches and canes are mainly useful for helping people to walk. They have other uses too. If you watch the US television show “House”, you might observe Dr. House using his cane for a variety of other creative purposes, such as a reaching device.
The metaphor of “crutch” can be reclaimed by using it as a positive metaphor. Some examples of this:
“I appreciated having creative projects to do as a crutch to help me through the grieving process.”
“I handed out fliers at a recent event. They were a good crutch for helping me go up and talk to people I don’t know.”
If you are looking for another metaphor to use for a tool that a person uses for a short time before moving onto the next stage of development, I suggest using “training wheels”.