Category Archives: guest post

Guest Post from RMJ: Ableist Word Profile: Crazy

RMJ is a twentysomething with OCD who grew up in Kansas and currently lives in Virginia. She works in education and loves cooking, cats, and television. She blogs about feminism and stuff at Deeply Problematic. RMJ’s previous guest post: Athletes with Disabilities: Arm-Wrestlers as Exceptions and Inspirations.

  • Ableist Word Profile is an ongoing FWD/Forward series in which we explore ableism and the way it manifests in language usage.
  • Here’s what this series is about: Examining word origins, the way in which ableism is unconsciously reinforced, the power that language has.
  • Here’s what this series is not about: Telling people which words they can use to define their own experiences, rejecting reclamatory word usage, telling people which words they can and cannot use.
  • You don’t necessarily have to agree that a particular profiled word or phrase is ableist; we ask you to think about the way in which the language that we use is influenced, both historically and currently, by ableist thought.
  • 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

Like every ism, ableism is absorbed through the culture on a more subconscious level, embedding itself in our language like a guerrilla force. Crazy is one of the most versatile and frequently used slurs, a word used sometimes directly against persons with mental disabilities (PWMD), sometimes indirectly against persons with able privilege, sometimes descriptive and value-neutral, and sometimes in a superficially positive light.

As a direct slur against PWMD:

Crazy as a word is directly and strongly tied to mental disability. It’s used as a slur directly against PWMD both to discredit and to marginalize. If a person with a history of mental illness wants to do something, for good or bad, that challenges something, that person’s thoughts, arguments, and rhetoric are dismissed because that person is “crazy”. If a PWMD is going through pain because of something unrelated to their mental state, culpability for the pain is placed solely on their being crazy. Even if their suffering is related to their disability, it is, in a catch-22, dismissed due to their “craziness”; the PWMD is expected to pull themselves up by their bootstraps if they want to be viewed as a valid human being.

Examples:
“I can’t believe Britney shaved her head. Crazy bitch.”
“Not only is Dworkin cissexist, she’s fucking crazy!”

As a way to discredit neurotypical people:

Crazy is also often used to describe a neurotypical person that the speaker disagrees with. It’s used to discredit able-privileged persons by saying that they are actually mentally disabled – and what could be worse than that?

Examples:
“Tom Cruise is fucking crazy. Seriously, he’s batshit insane about Prozac, yelling at Matt Lauer and shit.”
“Did you hear that Shirley broke up with Jim? She thought he was cheating on her.” “Yeah, she’s crazy, Jim’s a great guy.”

As an all-purpose negative adjective:

Crazy is often used – even, still, by me and other feminists – to negatively describe ideas, writing, or other nouns that the speaker finds disagreeable. Conservatives are “crazy”, acts of oppression are “crazy making” , this winter’s snow is “craziness”. This usage makes a direct connection between mental disability and bad qualities of all stripes, turning disability itself into a negative descriptor. Whether it means “bad” or “evil” or “outlandish” or “illogical” or “unthinkable”, it’s turning the condition of having a disability into an all-purpose negative descriptor. When using crazy as a synonym for violent, disturbing, or wrong, it’s saying that PWMD are violent, disturbing, wrong. It’s using disability as a rhetorical weapon.

Examples:

“They took the public option out of the health care plan? That’s fucking crazy!”
“Yeah, Loretta went crazy on Jeanie last night. Gave her a black eye and everything.”

Crazy as a positive amplifier:

On the flip side, crazy is often used as a positive amplifier. Folks say that they are “crazy” about something or someone they love or like. But just because it’s positive doesn’t mean it’s a good thing. Crazy as a positive adjective still mean “overly” or “too much”. It’s meant to admit a slight lack of foresight or sense on the part of the speaker. Furthermore, a slur is a slur is a slur, no matter the context. Crazy is mostly, and overtly, used to mean “bad”, “silly”, “not worth paying attention to”, “too much”. Persons with mental illnesses are none of these things as a group. The positive use is not that positive, and it doesn’t absolve the mountains of bad usage.

Examples:
“I’ve been crazy busy lately, sorry I haven’t been around much.”
“I’m just crazy about ice cream!”

Crazy a destructive word, used to hurt people with mental disabilities. It’s used to discredit, to marginalize, to make sure that we feel shame for our disability and discourage self-care, to make sure that those of us brave enough to publicly identify as having mental disabilities are continually discredited.

Editor’s Note: It can take longer than usual for comments to appear on Guest Post entries. Please review our comment policy. Interested in Guest Posting at FWD? Check out our Call for Guest Posts!

Guest Post by Laura Overstreet: Book Review – Dancing at the River’s Edge: A Patient and her Doctor Negotiate Life with Chronic Illness

Editor’s note: We are very pleased to host this post from Laura, who is a first-time guest poster at FWD. FWD welcomes guest posts: please email guestposting [at] disabledfeminists.com for more information.

Laura Overstreet has been a wheelchair user for nearly 20 years as a result of transverse myelitis. She holds a Master of Arts in sociology, and her research interests include disability, sexuality, gender, health, and life course. She regularly speaks on disability awareness topics. Laura blogs at www.LeftyByDefault.com with the focus of surviving, thriving, and being real with disability.

Book Review – Dancing at the River’s Edge: A Patient and her Doctor Negotiate Life with Chronic Illness by Alida Brill and Michael D. Lockshin, M.D.

Alida Brill first landed on the “other planet” of chronic illness at age 12. In those years of the early 1960s, when her symptoms were not easily diagnosed and second-wave feminism was barely on the proverbial map, Alida became a feminist. Doctors ignored her and her mother because Brill’s symptoms were inconsistent and sporadic – and because she was a young girl. She has spent her professional career working for the rights of women and girls undoubtedly informed by those experiences in her young life.

Dancing at the River’s Edge is a dual memoir written by Brill, a woman with chronic illness, and Dr. Michael Lockshin, her physician. It is a rare, honest, and intimate account of their journeys. The chapters alternate between Alida and Dr. Lockshin as they tell us their stories of living with and working in chronic illness. Neither of them chose these respective lives – Alida never wanting to be chronically ill and Dr. Lockshin not intending to work in chronic illness – but their lives happened that way nonetheless. We as readers and fellow inhabitants of the “other planet” might admit something similar.

In reading about their journeys, we learn of their doctor/patient relationship which led to this book and we get a rare glimpse of the physician’s world and his delicate balance of treating patients. So often doctor visits are rushed and the relationship is one that primarily consists of the illness and/or disability. Sometimes we just want to get our questions answered and go home. More than any of this, though, we want to be seen and treated as whole people trying to do our best on the “other planet.” We want our doctors to know who we are in addition to our illnesses and/or disabilities. Dr. Lockshin does this with Ms. Brill, and we as readers reap the rewards of their partnership.

Brill voices the fears all too common for those with chronic illnesses and disabilities. Through the lens of the “other planet,”she gives us an honest portrayal of her illness, work, relationships, friendships, childhood and adulthood, the unique transition that occurs as we age, and the denial and subsequent recognition of illness. She brilliantly conveys the literal and figurative pain of a life filled with illness, yet in the end, she and the reader seem to recognize her life as one that, in her words, “really hasn’t been all bad.” Alida finds a way to thrive among the battle. Read this book not just because you can relate, you are chronically ill or disabled, or you are a supporter of the chronically ill and disabled. Read it for those reasons first – but pour yourself into it because it is beautifully written and a genuinely human story.

The paperback edition of Dancing at the River’s Edge is now on sale. It is also available in hardcover and e-book. You can also look for it on WorldCat.

Moderator’s note: Moderation on guest posts is often much slower than “usual” moderation times.

Guest Post: Storytime

Cara is a feminist writer who blogs at both The Curvature and Feministe. She likes The Beatles, vinyl records, and social justice, though not necessarily in that order.

The first time I saw someone say in a progressive space that it was ableist to use the word “lame” as a pejorative, I thought they were ridiculous. Honestly, I’m telling you right now. I did. I thought all of those things that you most commonly see argued whenever someone is called out on using the word or one like it. It’s not used like that anymore. No one is thinking about disability when they use the word lame. That’s not what it means. It just means bad, and it’s especially useful because it not only means bad, but also bad in a kind of pathetic and sad way … and no, I’m not going to think about what that certain connotation of the word means when it’s a word that also can be used to refer to a disability because it’s not used that way anymore, so it doesn’t matter.

I didn’t make an ass of myself publicly and argue as much. But I thought it. A lot.

And so I didn’t stop using it right away. I didn’t stop, because I used the word a lot, and because I liked using it. And I didn’t want to stop. And I thought that the reasons to stop were silly.

But I couldn’t say it the same way anymore. Every time I said it, every single time, I felt a jolt, a little jab in my spine, a little pain in my heart, a little tightness in my throat. It wasn’t because I thought I was being a “bad progressive,” because frankly the popular opinion among progressives was that using the word was fine and those who disagreed were wrong. It wasn’t because I realized that my brain was connecting pathetically bad things with disability, because I still didn’t feel like it was. It was because I had seen people say that when I used that word, it hurt them. And not only that it hurt them, but that it hurt them systematically, that it harmed them, and that the harm was oppressive.

I didn’t stop saying “lame” or any other word like it because I had a light bulb moment and realized the social connections between the different meanings of the word, and how there really is a reason that “lame” doesn’t just mean bad but uniquely and pathetically bad, when people with disabilities are so commonly portrayed as pathetic. In the end, I’m not entirely sure that it matters when or even if I started believing that. Because it’s not why I stopped.

I stopped because I didn’t want to hurt people. I stopped because I didn’t want to engage in what I claim to advocate against. I stopped because people told me that it was doing them harm when I did it, and because it hurt me to realize that that hadn’t initially been enough. I stopped saying the word because I realized that it was enough.

When it comes to a lot of language that is offensive to marginalized groups — the kind that is exceedingly common and even generally accepted by most progressives, including the types who take pains to correct someone for calling something “gay” or “retarded” — I have to say that I have difficulty getting angry at an average person who uses it. That, of course, comes from a position of privilege, and a position of having been the person who didn’t know any better about 10,000 times. When it comes to most of these words, I am privileged. These words tend to not denigrate me as a person, my humanity, my existence. It is a privilege that I can say “they don’t know any better” and politely inform them otherwise, that I can give them the benefit of the doubt that they will try their best to not do it again. I’m not saying that I expect otherwise of different people, or that anyone else is wrong to get angry at someone who “doesn’t know any better.” At all. That’s just me.

But. When it comes to people who I know know better, who I know have been informed, who I know have been exposed to the harm that certain types of language can do, common though it may be, and then still not only use it, but use it so frequently that it seems like it’s almost on purpose as some kind of gross defiance … I don’t know quite what to think. But I do know it makes me really, really angry to see.

And it makes me wonder about their progressive credentials, not because I can’t believe that they fail to see the exact theoretical reasons and linguistic history as to why the word is one they should stop using. But because they know they’re harming people, people more and differently marginalized than themselves, no less … and just don’t seem to care.

This post originally appeared at Cara’s Tumblr and has been cross-posted with permission.

Guest Post: Temporarily Able-Bodied: Useful, but not always true

by Laurie Toby Edison and Debbie Notkin
Body Impolitic

Following up our post here late last year about “disability and aging,” we’ve been thinking about the phrase “temporarily able-bodied,” a mainstay of disability community language which we’ve both been using for 30 years or so.

In Annaham’s Disability 101 post on this blog, she says:

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.

We have the highest respect for the use of TAB and “temporarily able-bodied.” Using it is a way for a disability activist (or anyone discussing disability) to quickly and effectively bring all of her/his listeners into one group: some of us are disabled now and many of us will be sooner or later. It’s a phrase that builds community, that reminds people that the needs of some are really the needs of everyone. It’s akin to “universal design” as a phrase reminding us of what brings us together, rather than what separates us.

At the same time, like any catchphrase, it’s oversimplified. Disability is not inevitable. Only two things are always temporary: life, and youth. Everything else is conditional, contextual, and/or statistical. Definitions of ability/disability are exceedingly complex; even definitions of “aging” are less obvious than they might immediately appear.

Ability is not always temporary. Two large groups of people are able-bodied until they die: first, those who age able-bodied (not just 90-year-old hikers but also people over 80 who walk to the grocery store every day and clean their own homes). Second, and harder to see, are the people who die able-bodied at any age. In a culture that tries not to admit that people die at all and is especially resistant to admitting that young people ever die, it’s important to remember that death and old age are not synonymous. And, of course, disability is not always permanent either: the world is full of people who are temporarily disabled.

To return to our catch-phrase, “temporarily able-bodied” is often used as a reminder that disability can come to any person at any time, that you can wake up able-bodied and go to sleep disabled, just as you can wake up alive and never go to bed again. In this meaning, it’s both true and useful. But it’s also used, somewhat more sloppily, as a prediction: you, the individual I’m talking to, will not always be able-bodied. And among the things that are disturbing about that usage is that it encourages the cultural conflation of “disabled” and “old,” so that people in their 30s or 40s who are in some kind of body pain say they “feel old,” when what they feel is pain.

We’ll both keep using “temporarily able-bodied” in conversations about disability. And in those conversations, when we have the time and space to elaborate, we’ll explain how we’re not using it.

Guest Post: Puppies and Pills Part 2

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.

Puppies and Pills Part 1.

I’m back, did you miss me? I’d like to talk a little bit about the service dog community and public perception of service dogs and I’m hoping this will be interesting to more people them just me. Your comments and questions are appreciated.

All of my experience with the service dog community is online, which makes things a bit different than they would be if I was interacting in person. Any statements I make are huge generalizations, so please, take them will a grain of salt. This isn’t make to pick on anyone person or any particular community.

The online service dog community can be a bit abrasive, in part because of the worry about fakers. There are cases of people coming in and learning the lingo and the lay to pass a pet dog or an emotional support animal off as a service dog. While I recognize this is a problem, I do think that we could cut people a little slack. I see a lot of the aggressive questioning being directed at people interested in a service dogs for psychiatric issues, because of confusion people have about the difference between a psychiatric service dog and an emotional support animal.

However, the online service dog community is also very helpful. They are willing to point people at programs or trainers that suit their needs and help people with financial difficulties come up with ideas for funding. The community is ready to help with writing campaigns at a sign of injustice and isn’t afraid to take mistaken or bigoted people to task, even if they write for well respected newspapers. If someone’s service dog gets sick they are always there with support and help finding ways to get treatment if money becomes an issue. The people in the service dog community care and they care passionately.

If you can’t meet teams in your area the online service dog community is invaluable and I’d say they are great even if you can. It’s great to have people who get it, even if we disagree on some issues. It’s great to have others who can understand what it’s like to have an access issue, or what it’s like to take a dog to the zoo.

This actually brings me to my next point, access for service dog handlers and the public. It’s a joyful topic, full of good times and understanding and caring business owners.

Okay, I lied. The general public’s understanding of service dogs or in some cases that there is anything beyond guides is very low. It makes sense that more people know of guide dogs, as they are did start the first service dog schools and hold their dogs to a very high standard. I must say that the constant questioning of whether I am blind is most annoying, not because I’m insulted, but because what my disability is or isn’t is not up for public consumption. When one adds in American society’s feelings towards mental illness, I rarely feel disclosure is in my best interest. Some in the service dog community itself are still against the idea of service dogs for people with mental illness, so I expect even less acceptance of the general population.

One thing that gets to me is how few business owners know the law. Right now I’m covered under Maine state law, but I do think that a business owner should at least know the ADA [Americans with Disabilities Act} at this point. It has been nearly 20 years, after all. So, I take pamphlets with me, even when I don’t have Figaro, to tell businesses about their rights and responsibilities. I figure if I keep this up, it should cut down on access issues, not only for me, but for all teams.

One thing I wish people understood is that petting a service dog can put the handler in danger. Yes, our dogs are trained to ignore you, but even the best dog breaks training. I love Figaro, but I wish people would talk to me not him and accept that maybe I don’t feel like talking that day. Drive by petting is one of my peeves, because by the time I process it, people tend to be too far away for me to scold or educate. I understand that people love dogs, but just as you shouldn’t go around grabbing a person’s wheelchair, you shouldn’t touch my dog without my permission. He’s not a public petting zoo.

People have attacked service dogs, kicked them, spat on them, set their dogs on them. This is unacceptable. Beyond the fact that a service dog may be someone’s independence, it’s also a living creature worthy of respect. Our dogs are not abused slaves and honestly, I think most service dogs have a better life than most pet dogs. What pup wouldn’t want to travel with their person and help them out, all the while seeing new things and people?

I try to believe that people are mostly good, if misguided, and therefore I’m going to keep educating. I hope that someday access issues will be far and few between and more people who could benefit from a service dog could have the partnership I’m able to have.

This is my next to last post in this series and next time, I’d like to talk a bit about cost of a service dog and ways to get a service dog.

An emotional support animal (ESA) is a US legal term for a pet which provides therapeutic benefit to its owner through companionship and affection. Emotional support animals are not specially trained to ameliorate disability as psychiatric service dogs are. They require only as much training as an ordinary pet requires in order to live peacefully among humans without being a nuisance or a danger to others.

Guest Post: Future of Portrayals of Disability in Movies? Cameron’s Avatar

Esté Yarmosh has Cerebral Palsy. She holds a B.A. in English from Eastern Connecticut State University and is currently studying for her Master of Arts degree in English at Simmons College. Her previous guest posts are Cerebral Palsy Humor? Not so much and Disability Dismissed

I’m something of a Sci-fi fan, especially when it comes to the literary genre of science fiction. And when I first heard about James Cameron’s new Sci-fi movie Avatar, I was fascinated, and I watched the trailer(s) right away. In some ways, I was blown away by the visuals, particularly the images of the alien planet “Pandora” and the image of the incubation tank of sorts that holds the main character’s alien body. Even the idea of placing your mind in an alien body to do space exploration initially intrigued me. Also, when I read that the protagonist was a wheelchair user, I was interested.

My doubts started forming, however, when I looked more closely at two sources: the movie’s dialogue and the movie’s synopsis. I want to start with the synopsis. Through about the film’s box office numbers, I understand that Avatar is quite popular with audiences. This synopsis contains profoundly ableist language in the way it describes the protagonist Jake as “confined to a wheelchair.” I don’t use a wheelchair; nevertheless, I was very offended when I read that. We’ve been trying to eradicate terms like “confined to a wheelchair” for a while now, and to see this demonstration of ignorance on such a large scale, since it is mainstream, is distressing.

I wonder if the producers or whoever wrote the official synopsis thought that they were being more politically correct by saying “confined to a wheelchair” instead of, say, wheelchair-bound. The fact is they aren’t being PC by declaring Jake is “confined to a wheelchair.” Actually, wheelchair-bound and “confined to a wheelchair” are synonyms and the writer(s) of the synopsis aren’t helping either people with disabilities or the non-disabled population by using that term. I worry a bit because non-disabled people may think through reading this synopsis that referring to someone who uses a wheelchair as “confined to a wheelchair” is okay – but of course, it’s really not — wheelchair user, for instance, is more acceptable. I’ve checked –I know that this synopsis has flooded the Internet and it is most likely people’s main source of information about Avatar.

I also want to take the sentence (from the plot synopsis of Avatar) “Bitter and disillusioned, he’s [Jake] still a warrior at heart” to task. To me, it smacks of disability stereotypes. First, I think the sentence inspires pity in the reader, which is regressive and entrapping for people with disabilities because it signals the endurance of a vicious cycle of stereotyping – in this case, the pitiable cripple. Another stereotype that can be inferred from the sentence is that of the wounded/disabled veteran. I’ve read in one of the (few, alas) analyses of portrayals of disability in film and TV that a component of the disabled veteran is his jaded and cynical attitude towards life and people – he becomes a bit of a misanthrope.

Now, about Avatar’s dialogue – in one of the theatrical trailers, Commander Quaritch (leader of the mission says to Jake), “you’re going to get your real legs back” or something to that effect. [opens with sound] Yet this piece of dialogue overlooks a fact that’s glaringly obvious: Jake still has his legs! Yes, he has a disability, but what’s the problem with his legs and/or wheelchair? The commander is implying that there is something not just physically, but morally, wrong with Jake’s disabled legs and wheelchair use: it is unacceptable in the military for a soldier to be disabled and, moreover, to show it.

And there is another issue I have with the way Quaritch uses the word “real.” The legs Jake has while in his wheelchair are the ones he was born with, and therefore, are true and natural, albeit he is now in a wheelchair. The commander is being terribly ableist and in denial of disability issues when he makes this statement. It’s a long-held stereotype (and still exists today) that disability is unnatural in people and so must be fixed or cured (an issue brought up by Meloukhia in ou article on Avatar). The thing is, disabilities have always been with us (for both non-disabled and disabled people) and according to Paul Jaeger and Cynthia Ann Bowman, 550 million people all over the world have disabilities, so disabilities are, in fact, quite natural.[1.
Bowman, Cynthia Ann and Jaeger, Paul T. Understanding Disability: Inclusion, Access, Diversity, and Civil Rights. Praeger Publishers, Westport, CT: 2005. 165 pp.]

Avatar does not even confront disability in an honest and upfront way. The film, in my opinion, takes the easy way out by putting Jake in a completely different body (the alien) and thus, it completely bypasses any meaningful efforts for dealing with Jake’s disability and the issues that arise from it. I suppose that the film’s whole plot hinges on the fact that Jake enters an alien body to explore the planet “Pandora,” but still, the film seems to willingly ignore the regular experience of Jake as a disabled person in favor of an instance of “how cool is this alien creature!” The aliens really remind me of tigers in their ferocity, tails and stripes (!). The aliens also sort of remind me of elf-like creatures I’ve seen in certain illustrations and I’ve read about in fantasy novels: the Drow. Anyway, Jake is seduced into believing that an alien body is better for him than his real, disabled one and he gleefully decides to participate in the military’s little experiment.

The word experiment brings me to another point: the so-called medical model of disability. This version of the medical model in Avatar is glossed over with fancy and distracting features: advanced technology, a futuristic setting, alien life-forms and magic. Yet when these features are all stripped away, we can see that Jake is still being worked on physically, tampered with, if you will, by scientists—the medical model. In much the same way in real life, people with disabilities are prodded, observed and examined (sometimes exploited) by doctors, who claim they know what’s best for us.

That’s how I got a snapped tendon which is currently floating around somewhere in the vicinity of my knee. It’s the result of a semi-botched leg operation, in which “we overcompensated,” my orthopedic doctor (so helpfully –*sarcasm*) let me know years later. Yeah, you really know what’s best for me. I dislocated my knee twice during the years following the operation, and sometimes I think the snapped tendon was a contributing factor, although I probably will never really know.

Also, why are fictional characters with disabilities often put in films (and TV shows) with Sci-fi plots/concepts? To me, it perpetuates the stereotype that people with disabilities are ‘freaks’ and like I said earlier in this article, somehow unnatural. The instances of disabled characters showing up in Sci-fi movies seem to lump them together with strange Sci-fi creatures like aliens, androids and robots, to name a few; yet, as we all know, people with disabilities are human! However, I think that unfortunately, the writers, producers and directors of these types of films believe that disabled people are interchangeable with said aliens and androids. The creative decision to make Jake into an (albeit artificial) alien displays this belief; it further shows that Jake doesn’t deserve to be human because he isn’t ‘whole’ or ‘normal.’ Why can’t there be films and TV shows about people with disabilities that have a contemporary setting and that take a realistic approach to their subject matter (not counting Glee, which has representation problems of its own)?

Meloukhia’s earlier post about Avatar mentioned the film’s aspects of crip drag, so I won’t go into that, but I’d like to say something about how non-disabled film-makers seem to think that a wheelchair stands for all people with impairments, whether these are physical, sensory, mental, cognitive, learning, etc. This is of course wrong: disabilities are way more diverse in nature than simply having a wheelchair, and not all physical disabilities even require use of wheelchair (such as in my experience). Although if you think about it, we can take issue with the international accessibility symbol, too – it shows a figure in a wheelchair. This is the second (male, by the way) character in a wheelchair featured in a mass media production in the past six months (Glee’s the other). When will film-makers (and TV producers) create a character that has a disability which doesn’t involve a wheelchair – perhaps Epilepsy, or Asperger’s — to replicate the vast range of disabilities in real-life?

Furthermore, it seems to me that there are few, if any, films and TV shows which center around a disabled character that is also female. I’d like to see that, and not in the distant future either. Another thing I’d like to see out of a film or TV show is a female character with a disability that has a significant sex (and/or romantic) life; I guess I’ll have to keep hoping we’ll get that someday. Avatar doesn’t deliver on these fronts (and neither does Glee), because as usual in films and TV shows, the man, disabled or not, gets the girl in the end.

I know I’ve written a really long post, but one last thing. Has anyone seen this [toy of Sully] yet?

Guest Post: Book Review: Everything Beautiful

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.

Guest Post: Disability and Aging

by Laurie Toby Edison and Debbie Notkin
Body Impolitic

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.

Guest Post: Hanging Up the Cane

Lis is a 22-year-old university student from Western Canada. She studies psychology, and is currently working at a school for at-risk inner-city youth. In her free time, she writes fanfiction and participates in the Society for Creative Anachronism.

The first time I held my cane, I cried.

It wasn’t a feeling I expected, to be honest. I’d been fired the week before from a job I enjoyed, for telling my employer I was in too much pain to stand for the entire shift, but things were coming out on my side. I had all my friends and family supporting me, and I’d found enough self-esteem to file a complaint with the provincial Human Rights Commission, alleging discrimination on the basis of disability. It was time, in my mind, to give up beating around the bush.

I’d been raised by parents who lovingly ignored my seemingly minor birth defects, who didn’t want to stigmatize me any further than a Gifted girl in public school could be. They felt that letting me wear normal shoes was the least they could do. When a nagging ache formed in my right knee and hip in my teens, I tried to ignore it and the fact that it wasn’t going away. I was twenty before I went to a podiatrist, who didn’t have to do more than examine my hips and spine when I told him I was in pain before snorting in disbelief and saying, “Yeah, no wonder.”

My right leg is five and a half centimetres shorter than my left, with the discrepancy fairly evenly distributed between my femur and tibia. It’s the kind of thing only the tailors who hem my pants notice, when they call my house anxiously asking me to come in for a second fitting in case they made a mistake.

But I was sick of living in pain, and after I’d been fired for requesting a stool it didn’t feel worth denying my pain anymore to look abled, so I went out to the Mobility Aids aisle of the local London Drugs. A fellow fanfic writer who used a cane had told me what to look for: adjustable, orthopedic, and unrepentant. The one I picked off the rack was a vivid aqua.

Then I cried holding it in my hands, because I couldn’t pretend anymore that I wasn’t disabled.

After that was over, I went down to Stationery for a pack of Sandylion stickers, made my purchase, and sat outside that drugstore wiping the tears from my face and plastering the cane with pink and purple butterflies.

How do I say what that cane meant to me? None of the abled people I’ve met understand it with anything but pity. I’ve always had low self-esteem and what my psychologist later diagnosed as social anxiety, a terror of asking that my needs be met, of attracting unwanted public attention. Now I had a public declaration of my needs, and it was bright blue. The cane did some of my talking for me, so I became able to stutter a request for a seat on the bus, or ask not to walk long distances. I was attracting the sidelong glances and whispers I’d always feared, but all they made me do now was grip my cane a little harder and stare back at them. I knew I was in the right. They knew it, too, because they always glanced away.

How can I explain that after years of living in pain to be what was expected of me, that cane taught me to say I want and I need and I deserve? That it was never something I was bound by; that it gave me the ability to walk further, stand longer, move quicker than I would before? That I missed it when it wasn’t in my hand?

Society marginalizes disabled bodies and takes away their sexual agency, but being visibly disabled helped me find mine. I’d always felt anxious about my body, about being attractive, about being good enough: I always chided myself for not reaching some nebulous ideal. The great lie I had been able to believe when I was abled was that perfection was achievable: that if I only said and did the right things, I’d escape criticism from myself and others. It was in facing criticism and dismissal that I learned I’d been playing a mug’s game. The point wasn’t to make other people happy; my body didn’t and couldn’t exist to meet their standards. The only standard I could meet was mine. I used to be mousy, deliberately homely, as if my unfitted jeans and baggy shirts said, I quit, don’t criticize me for not being sexy. I wasn’t trying anyway. I was able to use the invisbility cloak of disability to begin to experiment with femininity, with ornamentation, without needing to be perfect. I could wear a low-cut shirt, I reasoned, because I’d have my cane. Nobody would look at me anyway.

(Oh, but it surprised me, the first time somebody looked anyway.)

Being disabled meant, for the first time, having the ability to talk about my body and my frustrations with it without judging it as bad. It meant that I, with all my flaws visible and invisible, was still worthy. That I still possessed dignity. That I was still human, no matter whose standards I failed to meet.

I don’t know how to explain any of this. I don’t know how to respond when I walk into work now, freely and unassisted, and have a coworker say, “Hey, you aren’t using your cane! That’s fantastic!”

The orthotic lift I started using a year ago finally stopped hurting, enough that a slight increase in height at the end of September took away the pain in my knee within two weeks, which got rid of my need for the cane. My ambient pain has at least halved. I’m not relying on prescription painkillers to get through my day. I can climb stairs. I’m beginning to hope I can even fence again. After so long living with pain I didn’t think would ever go away, I almost don’t know how I feel. I guess I’m happy. I’m cured, right? I’m enjoying my body again. I definitely don’t miss the pale, persistent ache in the shoulder of my caning arm that no height adjustment could completely banish. I ran to my car last week, just because I can do that now.

My cane still hasn’t moved from its habitual place, on the floor of my car between the seat and the door. I don’t take it out to use it anymore, haven’t touched it for the last two weeks, but I can’t bring myself to hang it up. Sure, part of me’s waiting for the honeymoon to end and the pain to come back at any moment, but that’s not it. That cane has been a friend to me. It’s been part of my voice, my statement about who I am, and a lack of apology about being flawed in public. It’s helped me move, let me go places, allowed me to function. It has been a source of succor to me in my hour of need, and I find it as hard to cast aside now as it was to pick up in the first place.

What I really want to say to the well-meaning people who wish me health and happiness is, it isn’t about the cane. It wasn’t about receiving pity from people in public for being disabled. It wasn’t about the looks or the whispers. I was in pain that disabled me from truly living for years before I picked that thing up. It was never about the cane.

It was about me.

Guest Post: Puppies and Pills Part 1

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.