Category Archives: guest post

Traveling While Disabled: One Size Fits All?

When it comes accessibility, where it exists, it seems that it often begins and ends with some accommodation for wheelchair users. And it seems, at least in my experience, that this is especially so in the case of the travel industry.

Several weeks ago, my air conditioning at home died and my house was hovering at a near constant 90°F and I just couldn’t take it any more, so I headed off to a hotel room for a weekend. While I was at the hotel, the fire alarm went off. (Actually, it went off five times, but that’s a story for another time.) As I opened the door of my room to evacuate, I was shocked by a bright flash of light coming out of the room across the hall. In my rush to get out of the building (which wasn’t on fire or anything like it) I didn’t think about the flash. It wasn’t until I returned that I realized what I’d seen.

My room was across the hall from the two wheelchair accessible rooms in this hotel, and that bright strobing light was the fire alert for the hearing impaired.

In a wheelchair accessible room.

I’m not sure if this particular hotel figures that wheelchair users are more likely to be deaf, or that deaf people are more likely to use wheelchairs.

It seems more likely that the choice was made based on the common misconception that “wheelchair users must have wheelchair accessible rooms, but anyone can use one” thus it’s no big deal for a non-wheelchair using deaf person to have to stay in that space. This is, of course, not true. The lack of tub, higher profile toilet and lower sink and bed each have implications for people for a variety of physical reasons.

And clearly they either haven’t realized or simply don’t care that if a deaf guest has to be in one of the two wheelchair accessible rooms in order to be safe in a fire, that means a wheelchair user can’t be accommodated at that hotel at all.

And so it goes. There was no signage for blind guests, except at and in the hotel’s elevator. There was no way for a blind guest to use the navigation signs to get to the elevator, nor to figure out which direction their room might be in once they were off of the elevator.

And what of guests who have mobility limitations but don’t use wheelchairs? This is my area of attention, because that’s me. In particular, I have arthritis and precarious balance, and the place where this becomes an issue most frequently the shower. Far too often, there is nothing to hold onto to climb in and out of the shower (which is odd considering that bathroom falls are so common and so dangerous) and inside the shower, there are slippery floors, sloped toward the drain. Showering in a hotel for me is often an exercise in holding onto the shower curtain rod and barely moving for fear of falling.

A walk-in shower without a tub would be ideal for me, but the tourist or business class of hotel where I tend to stay (not being made of cash) doesn’t seem to think that such a thing is needed. (Oddly, large walk-in showers are present often on concierge floors or in higher end hotels as a luxury item.) But at the same time, the other modifications which are made in bathrooms in wheelchair accessible rooms are a burden to me. I’m left with the choice: do I fight with the shower or with the toilet? How does a person decide that?

The travel website Expedia allows users to search for hotels which have certain “Accessibility Options” like roll-in showers (not “walk-in” which points toward a fully wheelchair accessible room), equipment for the deaf, braille signage or accessible bathrooms (which may or may not have roll in showers, I have no idea why they’re listed separately) though it only seems to provide hotels which have such things. There is no guarantee that the room that a person books will have the accessibility feature that they need. And far too often, I’ve found that hotels aren’t even able to be sure that they’re giving a guest a room with the number of beds that were requested, or a non-smoking room according to the reservation. I have a hard time trusting that making a reservation for a room with a visual fire alarm will always result in getting one at check-in.

The answer is always “call the hotel directly.” Which is great, if the traveler is able to use a phone.

I am just cynical enough to believe that for planners, architects and managers in the travel world, accessibility is an afterthought, and the bare minimum which meets legal requirements is all that is done. We as PWDs should be glad that there are wheelchair accessible rooms, and if they don’t fit our needs, we just have to make do. They’re ADA compliant, after all.

I’m entirely sure that they could do better. What I’m unsure of is how to make that happen. This seems like an area where the usual catch-22 applies: they don’t have enough PWD as guests for a broader range of accommodations to seem necessary, but they don’t have PWD as guests because there aren’t sufficient accommodations. And as usual, we’re the ones who pay.

We also have the right to be in public

This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…

I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.

These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.

I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.

This is ableism.

Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.

I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.

These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.

One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.

All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.

Selective Mutism

“To choke”, used as a metaphor in performance, means to freeze up, to fail to perform, to be overcome with stage fright or other emotions and simply stop moving. To become “choked up” with emotion, a phrase familiar to many of us, means to feel emotion so strongly that it is difficult to speak. It is a feeling of the throat tightening and words stopping.

These are natural, normal phenomena that most people feel once in a while.

I have Selective mutism (link goes to Wikipedia) which I classify as a disability and also believe to be a natural and normal phenomenon, albeit a rare one, affecting an estimated 7 in 1,000 people. I am currently seeking treatment for it which has me thinking about selective mutism more than I usually do, and its impact upon my life.

Selective mutism is mostly seen in children and adolescents, and it is important to understand that it is a failure to speak, not a choice not to speak. It is not a reflection upon the child’s parents; it is a disability. The child would like to speak but cannot, in certain environments, to specific people, or about certain topics, due to extreme anxiety. This disorder can extend into adulthood, which is the case with me. I was never formally diagnosed or treated as a child.

There are specific instances from childhood and adolescence that stand out in my memory, and others that my family still talk about, that are good examples of selective mutism in my life:
I did not speak to my preschool teacher the entire year (but talked freely at home)
I did not talk to store clerks
I went to junior prom and did not talk to anyone due to anxiety
I did not talk much in church/Sunday school and did not make friends there; although I made friends freely in other venues

What I have trouble talking about now: Basically anything that is associated with a lot of emotion. Here are some examples:
Sexuality, being queer
My chronic pain and illness
Conflict with friends or family
I have trouble calling people I don’t know or knocking on doors, although I don’t think this is uncommon for shy people
I am sometimes uncomfortable being asked to keep secrets or not to talk about things because it reinforces this anxiety

One article I read recently said: “You can’t get a kid verbal until you have social comfort” (http://www.selectivemutism.org/news/people-magazine-spotlights-dr-elisa-shipon-blum-director-emeritus). This resonated quite strongly for me, because as a queer person in society, who was closeted (to myself) for a very long time, it is rare that I am socially comfortable. I have certainly learned many coping techniques. But it is hard to speak when you are not comfortable with yourself, and when society makes you feel unsafe. I cannot talk about selective mutism without talking about my experience of being queer, and being closeted. They are tied together. Activist Mia Mingus says, “intersectionality is a big fancy word for our lives.”

What does selective mutism feel like? People talk about a flight or fight response to danger. This is a third response, a “freeze” response. The body senses danger, although the source is unclear, and the body freezes. Talking is impossible. Even thinking becomes different, slowed, unclear. “How can I get myself out of this situation?” is usually what my brain is focusing on, but often that thought is in conflict with some other need or desire like wanting to be at a party or needing to answer a question directed at me. It is a terrible feeling, a deer-in-headlights feeling. I want to escape, but I can’t figure out how, I can’t figure out what is even going on. As I have learned more and more about this I have learned to simply feel the anxiety, feel it in my body and my throat, and not try to think so hard, try not to focus on words, which often do not work well for me in times of high anxiety.

What helps? Getting away from words and looking at images helps. Doing things that root me in my body helps, such as holding my hands under hot water. Writing out whatever is bothering me helps tremendously. And, importantly, I need to notice when it is happening. I have had this all my life; it’s my normal, after all, so I don’t always notice when I’m being anxiously quiet or peacefully quiet. I don’t always notice if there is something important in my life that I am not talking about. I don’t think this is just a selective mute thing: in a repressive culture, there are plenty of important things we just don’t talk about, for all sorts of reasons. This might be because to speak about them makes the thing more real; to speak might make other people uncomfortable or angry or bored; to speak might make myself vulnerable, because someone could use my words against me. Speaking is dangerous, and silence is a naturally protective stance. The body knows this, the throat closes.

Thankfully, the fingers don’t, the fingers can still type. Writing about my life is practice for talking about my life. It is worlds easier.

Speaking is a political and personal act. I want to get better at it, I want to value my own voice and what I have to say. I am taking baby steps in this direction. I am, strangely enough, good at public speaking as long as I don’t have to talk about myself, or something too personally connected to myself. I do better at speaking when my role is defined, such as in academic or club environments. I have read interviews of actors and other performers saying similar things, that the stage or screen is the only place they are comfortable speaking, because they are playing someone else, not themselves.

In all the reading I have done about selective mutism, on blogs, in scientific articles, on awareness websites, all the focus is on diagnosis, treatment, therapy. Don’t get me wrong, I think these things are great. But what I don’t understand is the lack of discussion on how to live well with the disorder. The social justice model of disability has taught me many things, and one of those things is that I don’t necessarily need to be cured. I can seek accommodation for my disabilities and live well with them. Why not teach kids with SM sign language? Why not let them type or write their responses to questions? Why do we privilege speech so highly? Other forms of communication are just as useful, and sometimes better. There are many forms of self expression. Words are just one kind, and speech is just one iteration.

Guest Post From Jesse the K: 20 Years and a Day for the Americans with Disabilities Act

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

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 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

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?

  1. Bowman, Cynthia Ann and Jaeger, Paul T. Understanding Disability: Inclusion, Access, Diversity, and Civil Rights. Praeger Publishers, Westport, CT: 2005. 165 pp.