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Jesse the K hopes you can take a disabled feminist to tea this month.
I’d hoped to have a delicious thinky post about the difference 20 years of the Americans with Disabilities Act has made for the world, the nation, the state, and me. Meditating on those topics proved so depressing I didn’t even leave the house yesterday. Ha! Depression is the gift that keeps on stepping on my toes.
So: the ADA and what it enabled today. In my zippity, comfortable power chair I zoomed to a “regular” bus stop and thence to my accessible health club where I swam for 40 minutes. I used half of the seated showers (what the staff insist on calling the “handicapped stalls.”) Most of the people I encountered treated me respectfully and without patronizing me. I saw at least 10 other people whose impairments were readily evident to me. Another bus to the next stop. I had no worries about crossing a six-lane 45mph road because my chair goes fast enough (but not, alas 45mph). There were curb ramps which almost met ADA specs almost all the places there should have been — the speedy chair simplifies crossing the street via driveways when necessary. I stopped in three stores during these errands. At one store the counterperson dramatically jumped back and performed the Vanna White maneuver to demonstrate that there was room to move in the shop. (Oh really?) The other stores gave me exactly the same attention as the evidently enabled* people who entered at the same time.
OK, that’s all about assistive technology, and there’s more AT-related items I could enumerate (built-in enlarging features in apps and OS simplify computer use; cordless phones; I’m stopping now).
The biggest change has not been in my body but in my perspective. In the late 80s, I’d been educating myself on social-model, disability-rights reading, but my impairments were not yet evident to others. That disabled people’s rights had been enshrined in law was hugely important to me. That the ADA used “mental illness” as an example finally tipped me into considering therapy.
So, thanks for my life, ADA: many mundane things, and a few great big ones.
The law is not enough; as Cal Montgomery taught me:
Discrimination is always illegal; only activism makes it unwise.
So thanks to these real-world colleagues and teachers, who enabled me to learn advocacy:
- Caryn Navy, who was infinitely patient with my AB privilege, remade a corner of the world at Raised Dot Computing, and demonstrated dignity through snark
- Chris Kingslow, who taught me that mental illness isn’t the end of the world
- Catherine Odette, who published Dykes Disabilities & Stuff, founded Able Lives Theater, and gave me permission to take as long as it takes
- Cal Montgomery, who decoded the disability studies stuff I couldn’t follow, made me laugh, and taught me that there is dignity in “behavior management,” as well as potential for abuse
- Mike O’Connor, who held my hand while I took my first steps into the public square
- Fayth Kail, who cranked open many minds as she served as an Assembly page in the state legislature while also campaigning for abortion rights, reminding me that advocacy has a life cycle
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Editor’s note: We are very pleased to host this post from sasha_feather, who has previously written for FWD: AWP: Crutch. FWD welcomes guest posts: please email guestposting [at] disabledfeminists.com for more information.
Sasha_feather is a science fiction/fantasy fan and anti-oppression activist. She is a contributor to Access Fandom
Book Review of The Rejected Body by Susan Wendell
The Rejected Body: Feminist Philosophical Reflections on Disability by Susan Wendell
If you are at all interested in Disability Studies (DS), I strongly recommend this book. I felt like I had a kind, clear teacher and friend leading me by the hand through basic and advanced concepts in DS, especially relating to feminism and ethics. It is the most accessible and worthwhile academic text I’ve ever read– I don’t have a good track record for reading non-fiction books or textbooks, and I was riveted to this book. Partly this is because The Rejected Body speaks so directly to my own life experience as a person with a chronic illness. Susan Wendell also has a chronic illness, ME/CFS, which is what led her into DS from Women’s Studies.
In the introduction, the author tells you what she’s going to tell you, talks a bit about her own illness experience and finding disability identity, and–making me fall in love with this book–clarifies her language use by, in part, defining scare quotes and why/how she uses them:
“Throughout the text, I use single quotation marks as scare quotes, that is, to draw the readers attention to concepts I question or to uses about which I have reservations. For example, I use scare quote around ‘The Other’ (a concept discussed in Chapter 3) to indicate that, while the concept is a recognized way of thinking about people who are different from oneself, ‘the Other’ is not a way of referring to people which I accept or take for granted” (Wendell 7).
Like many of us I had often heard both the terms “scare quotes” and “the Other” and never really thought about what either of them meant. This book is full of little moments like that– things that I had taken for granted or that had niggled at my brain, and which the book shines a bright light upon.
In the introduction, Wendell also notes the limitations of the book, mainly that it focuses primarily on physical disabilities, that the author does not attempt to speak for all people, and that she struggles with generalizations and use of language. And that’s just the introduction!
A few of my favorite parts that I would like to highlight:
*The pace of life. As someone with fatigue and pain, Wendell is interested in the pace of life as part of the social construction of disability. Those of us who need to think or move more slowly than others are thus disabled by society. She discusses the social construction of disability in chapter 2.
*The mind, the body, and suffering. I have been thinking about embodiment lately, brain-body duality vs. integration, and chapter 7 (“Feminism, Disability, and Transcendence of the Body”) really gave me some grist for this mill. I am going to re-read this chapter shortly, especially the section on pain. Basically, feminists have argued against mind-body duality for very good reasons: because this concept has been used against women’s bodies. We’ve been invested in “Our Bodies, Ourselves”. But for bodies that are suffering and in pain, there are reasons to want to transcend the body, and there is room within feminist frameworks to develop such an understanding: of being embodied, of having bodily autonomy, and yet still wanting to transcend the body and be less tied to the body’s functions, desires, and pains.
*The illusion of control. For PWD, we know that we often do not have control of our bodies, or at best have limited control, and it is sheer luck that determines what happens, a lot of the time. Will I be in less or more pain today? Will I get some new illness? I have basically no control over these things, and I know it. And yet the society I live in is incredibly invested in the illusion of control to the point where it is part of the mythology of my country and my people. As Wendell points out, this puts me at odds with the people around me, even in casual social situations where people talk about small health problems or things to do with their bodies. It’s a disconnect.
*Having no diagnosis Wendell specifically addresses issues of disability for people with no diagnosis. There are a lot of people in this category, and it sometimes can feel like there is no place for us, no identity, especially within the medical model. The disability community, in my experience, creates a place and identity for those of us without a diagnosis.
There were so many other things that I am probably forgetting. I wanted to underline everything. I read it slowly to give myself time to process everything I was reading, but overall it’s a fairly short and accessible book, just densely packed with great information and ideas. Note that because it’s published by an academic press, it is relatively expensive; I recommend searching World Cat to find copies in libraries near you.
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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.
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.
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.
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
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?
- Bowman, Cynthia Ann and Jaeger, Paul T. Understanding Disability: Inclusion, Access, Diversity, and Civil Rights. Praeger Publishers, Westport, CT: 2005. 165 pp. ↩