Category Archives: normality

American Apparel, Meet American Able

Oh, American Apparel. For those of you lucky enough to evade their reach, AA is a good company with a lot of problems. They started out selling themselves as the sweatshop-free, made in the USA, source for cotton basics like t-shirts, primarily wholesaling to people who would print and resell the clothes. In 2003, AA got into the retail business and started aggressively developing their brand, largely through their … controversial advertising style and campaigns.

The ads feature “ordinary girls” who tend to be young and thin (they’ve been described as “pre-pubescent“), are mostly white, and are often nude and/or in sexually suggestive poses. It is heavily featured on their website and in their stores, and the store employees are selected to resemble the ad models. I don’t want to post any of the images here, but you can see some examples here, here, and here (NSFW? Potentially? I wasn’t even looking for bad ones – those were the first ones in the Google search.). I live in Los Angeles – where AA is based – and I can walk to at least two AA retail stores from my house. There are billboards and store displays and newspaper ads and posters of AA ads seemingly everywhere I look, and beyond that, I see the same style replicated in other magazines and videos and tv shows and …

So when I saw the photo exhibit “American Able” float across my tumblr dashboard this afternoon, I was really excited. The photographer, Holly Norris, explains the project:

‘American Able’ intends to, through spoof, reveal the ways in which women with disabilities are invisibilized in advertising and mass media. I chose American Apparel not just for their notable style, but also for their claims that many of their models are just ‘every day’ women who are employees, friends and fans of the company. However, these women fit particular body types. Their campaigns are highly sexualized and feature women who are generally thin, and who appear to be able-bodied. Women with disabilities go unrepresented, not only in American Apparel advertising, but also in most of popular culture. Rarely, if ever, are women with disabilities portrayed in anything other than an asexual manner, for ‘disabled’ bodies are largely perceived as ‘undesirable.’ In a society where sexuality is created and performed over and over within popular culture, the invisibility of women with disabilities in many ways denies them the right to sexuality, particularly within a public context.

The photos are amazing! They are spot-on emulations of the AA ad style, but feature Jes Sachse as a model. Sache, who in another amazing photo project explains that her spine was fused as a child, looks enthusiastic, playful, sexy as hell, and very different from AA’s usual TAB models. The photos are all copyrighted so I can’t embed any of them here, but I really strongly encourage you to click through and look at the whole series!

There has been some discussion of whether this art project “works”, in terms of making the intended point of mocking the original ads and portraying a woman with disabilities in a positive and sexualized context. I’m not sure that’s a concern for me – I can’t see these photos gaining enough exposure or distribution to cause any serious harm to PWDs, even if people do feel disgusted or upset at the images. For me, their true power is how they both quickly and precisely underlining the narrowness of the American Apparel view of beauty, while demonstrating that PWDs can be enthusiastically sexual. Ms. Sachse looks like she is having a blast, which also makes me happy.

What do you think?

Social Campaigns Based on Ableism

Via Information Aesthetics, a blog I read because i am obsessed with data visualizations and charts and graphs, I read about a new campaign designed by “eco-design consultancy Giraffe Innovation.” They’ve created a website where a user creates a humanoid form to represent themselves. The site then tracks the person’s environmental impact – things like home energy use and waste creation – and represents their individual environmental impact by modifying the humanoid form that represents them.

It’s when we get to the specifics of how the representative form is modified that I start to get uncomfortable. As the site describes:

The website shows the environmental impact of a person by using humanoid forms with body parts distorted relative to the environmental impact of common activities. Each part of the body is allocated to a different type of environmental burden: the feet correspond to the transport footprint, the hands to home energy, mouth to water, stomach to consumption, bottom to waste and the eyes and head to electrical consumer products.

Here is a sample image demonstrating some of the distortions:

A group of humanoid figures, seemingly sculpted from grey clay. The center figure is a "normal" man. The surrounding figures have distended bellies, exaggerated hands and feet, larger skulls, and protruding lips.
A group of humanoid figures, seemingly sculpted from grey clay. The center figure is a "normal" man. The surrounding figures have distended bellies, exaggerated hands and feet, larger skulls, and protruding lips.

The whole purpose of the website, the underlying assumption that makes this a meaningful exercise to convince people to reduce their environmental impact, is that when people see these “distorted” human forms that represent themselves, they will be so horrified that it will motivate them to reduce their impact so they can again be “normal.”

There’s got to be a way that we can encourage and motivate people to be more environmentally aware without drawing from, relying on, and reinforcing these ideas about “normal” bodies.

The full site for the project is available here.

Guest Post from RMJ: Athletes with Disabilities: Arm-Wrestlers as Exceptions and Inspirations

Editor’s note: We are very pleased to host this post from RMJ, and will be featuring some more writing from her, and several other awesome guest posters, soon. FWD welcomes guest posts: please email guestposting [at] for more information.

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. This post also appears at Deeply Problematic

Athletes with physical disabilities (hereafter AWPD) are a problematized group. Their accomplishments are questioned and devalued as less valid or challenging than those of able-privileged athletes. They are not party to the often problematic veneration of athletes in today’s society, nor are they permitted to participate in generalized sporting events.

Arm-wrestling is a sport, though, that seems to both accommodate and welcomes athletes with disabilities into their ranks. There is a specific subset of arm wrestling for athletes with disabilities that seem to be a regular part of official arm-wrestling tournaments. I don’t know much about the sport and I’m not currently physically disabled, so my perspective on this is far from authoritative. But my tentative reaction to this is positive, particularly since athletes with disabilities can and do succeed in general competition.

Larry Feezor is an athlete with disabilities who competed recently in the 3rd Annual U.S. Open Armwrestling Championship. He has used a mobility aid since a motorcycle accident paralyzed him from the waist down. This story from an Oregon television station makes Feezor the focal point of the championship. The story is pretty short and context is important to my analysis, so I’m going to reproduce it here in full:

FLORENCE, Ore. – The Third Annual U.S. Open Arm Wrestling Championship wrapped up in Florence Sunday, as amateur wrestlers took to the ring to battle it out.

One competitor stood out for beating the odds: Larry Feezor.

He has been arm wrestling for 18 years, traveling from Weaverville, Calif., to Oregon to participate in the competition. This sport is his outlet since he became disabled.

“I was involved in a motorcycle accident and a drunk driver ran me off the road,” Feezor tells KVAL. “I hit a bank at about 70 miles per hour, [and] was paralyzed from the chest down.”

Feezor received roaring applause when he beat his first opponent.

On Sunday he arm wrestled some of the strongest competitors at The Three Rivers Casino. And he wasn’t going down without a fight.

“Right after my accident,” Feezor said, “I told my father that I would fight, as hard as I could, for as long as I could.”

Feezor isn’t letting his disability bring him down. As a former athlete, he said his body may not be like it used to be, but his mind is stronger than ever.

“I am out here just like these other guys,” Feezor said. “I just happen to be in a wheelchair.”

Before I break this article down, I should mention its good points. It is wonderful that athletes with disabilities recognized. It’s fantastic that Feezor’s achievements are reported on in a positive fashion. Feezor is ostensibly framed as normative. The newspaper is using Feezor’s words and Feezor’s voice, rather than, say, his father’s.

However. Feezor’s participation is the only aspect of the tournament that’s detailed, and his accomplishments are not well-articulated. The singling-out of Feezor and complete erasure of any other athletes in competition is problematic because it trivializes Feezor’s competition in a sport. It implies that the sport is only notable for the inclusion of a person with disabilities – Feezor is not in a competition, but instead someone to be cooed over and patted on the head simply for participating. He’s not being applauded for his accomplishments, he’s being singled out because he “beats the odds”, whatever that means. If this were an angle in a story that clearly reported on the events of the tournament, it would be significantly less problematic. Feezor would be presented in the context of other athletes, and not just othered because of his disability and his marginalized sport.

An example of this is Joby Matthew, an Indian arm-wrestler, who has underdeveloped legs due to Proximal Femoral Focal Deficiency. Matthew seems to be higher-profile than Feezor, but increased coverage also means increased problems, particularly since it’s from the Daily Mail:

Who needs legs? Meet Joby, the 3ft 5in world champion arm wrestler who can bring down opponents twice his size

Instead of bemoaning what he lacks, Joby Matthew is using what he’s got.

Matthew’s accomplishments are not notable in this article: only his disabilities. I’m not quoting or going through the whole article because the able privilege is so dense. The first line is indicative of the attitude taken in the article: Matthew doesn’t “bemoan”, unlike those other people with disabilities who would surely be champion athletes if they just tried. The construction is an ableist implication that other folks with disabilities are lazy whiners. Throughout the article, every reference to barriers Matthew faced is immediately matched by emphasis on how he overcame this disability. The focus is not on his exceptional effort and achievements, but on the “heartwarming” “good cripple”.

There are a few good aspects of the article. It’s composed largely of quotes from Matthew, and it does make note of his many medals and of his training regiment (though that, of course, is as much focused on what he can’t do as what he can’t.) Matthew’s childhood athleticism is made a major point of focus, particularly his struggles in playing with other children. While I appreciate that the authors focused on quotes from Matthew, the focus on competition with currently able-bodied athletes frames participation in sports against currently able-bodied (CAB) athletes as the standard for athletic accomplishment for AWPD.

While I do not love the article, I loved these pictures of Matthew and am quite impressed with his accomplishments and his goal of climbing Mount Everest. Though the exceptionalist attitude makes the context problematic, these pictures are awesome:

Joby Matthew holds himself up with one hand while giving the thumbs-up with another. He is on the bank of the Periyar river on the outskirts of Ernakulam. He and his fantastic mustache smile broadly at the camera.

Photo: Joby Matthew holds himself up with one hand while giving the thumbs-up with another. He is on the bank of the Periyar river on the outskirts of Ernakulam. He and his fantastic mustache smile broadly at the camera.

Joby Matthew and an unidentified man arm-wrestle on a weight bench. The unidentified man, who has a beard and fully developed legs, grips the far side of the weight bench.  Both men are grimacing and neither appears to be winning.

Photo: Joby Matthew and an unidentified man arm-wrestle on a weight bench. The unidentified man, who has a beard and fully developed legs, grips the far side of the weight bench. Both men are grimacing and neither appears to be winning.

These photos highlight his exceptional abilities, and while his disability is present and visible, it’s a part of his athleticism. However, there are only two pictures in the eleven-part picture post that actually show him competing. Training and physical strength are interesting and relevant, but this is about sports: as with the article, the focus should be on his achievements as an athlete, not on OMG HOW DOES HE DO THAT? or OMG HE BEATS NORMAL ATHLETES?

The accomplishments of athletes with disabilities face a double bind. In most cases, they are ignored and erased; they are thought to be impossibility and a contradiction. When AWPD are covered in the media, it’s rarely a positive, normed framing of them as accomplished athletes with valid bodies. They are objects instead of curiosity; they are heartwarming inspirations for the currently able-bodied; they are not quite freak shows.

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

Quoted: Francisco X. Stork in ‘Marcelo in the Real World’

A scene in which the title character (who speaks in the third person) is explaining the way his brain works to another character:

”Cognitive disorder’ is not an accurate description of what happens inside Marcelo’s head. ‘Excessive attempt at cognitive order’ is closer to what actually takes place.’

‘Yeah? I like excessive order myself. Is that an illness?’

‘If it keeps you from functioning in society the way people think a normal person should, then our society calls that an illness.’

‘Well, society is not always right, is it?’

Marcelo in the Real World, by Francisco X. Stork

Why SF’s Proposed Sit/Lie Laws Are a Terrible Idea

In San Francisco currently, there is something of a debate brewing about Mayor Newsom’s proposed sit/lie laws, which would make it illegal for anyone to sit or lie on any public curb or street in San Francisco (with a couple of exceptions).

The intersections with disability here are rather clear. For one thing, there are some intersections between homelessness and disability, because some homeless people are, for example, mentally ill or have disabling physical problems. Do either of these things make them unworthy of compassion, or not human? Of course not, but from the way this proposed ordinance is designed, it is, on a very basic level, criminalizing homelessness even more than it is already criminalized (not to mention socially stigmatized), while taking extra “common sense” steps to avoid citing non-homeless people for an offense. Observe the following response to concerns that SF police would begin to crack down on non-homeless people were the laws to go into effect:

During a heated, five-hour Board of Supervisors public safety committee hearing on the issue Monday, Adachi showed photographs of behavior that would be illegal under Newsom’s proposed law: a well-heeled tourist sitting on her luggage as she waits for a cab, a little boy sitting on a sidewalk clutching his skateboard, and tourists sitting on a curb and gazing up at the sights.

Assistant Police Chief Kevin Cashman said all of those people would be warned first to move and that none of them would probably receive a citation.

“Obviously common sense is going to be part of the training with enforcement of this statute,” he said at the hearing.

Ah, yes, “common sense.” Common sense, apparently, still makes the further stigmatization of homeless people de rigeur. Because apparently, they don’t deserve to sit down in public, unlike “well-heeled” tourists and neighborhood residents. I wonder what the response to a person with disabilities — tourist or not — needing to sit down on a public street might be? Someone waiting for an ambulance? While that is approaching a bit of a slippery slope argument (which I generally like to avoid), it is worth considering, simply because “common sense” will mean different things to different people — those whose job it is to enforce the statute included.

Also interesting is the framing of this ordinance in terms of concern for children. From one of the SF Gate articles:

Newsom, who bought a home in the Haight recently, was convinced to support an ordinance after walking along Haight Street with his infant daughter and seeing someone smoking crack and blocking the entrance of a business.

Certainly, children need to be protected from dangerous situations or potentially dangerous situations, but is an ordinance that criminalizes the poor and homeless — not all of whom are recreational drug users or addicts — really the way to do it?

Additionally, nowhere have I seen any plan to increase the number of homeless shelters or services for homeless people attached to this ordinance. The implicit message behind these proposed sit/lie laws seems clear: It’s too bad you’re homeless, but don’t you dare be homeless on our streets, because it might make our city look bad. Oh, and you certainly shouldn’t expect the city to help you not be homeless — even after it cites you for breaking the sit/lie law.

(Cross-posted to ham blog)

‘Normal’ and the Dominant Narrative

He got through school, he has a good job and he married. That’s probably the biggest concern of Tourette’s sufferers and their relatives: Will their life be normal?

This quote comes from Anne Miller’s Washington Post piece, ‘‘American Idol’ segment helps push Tourette’s Syndrome into cultural mainstream,’ which I mentioned in ‘Whose Voices?‘ There’s a lot to unpack here, because there are a whole lot of problematic things going on.

‘Normality’ is often treated as a holy grail, especially for people with disabilities. Everything’s ok, as long as we can be normal, or at least act normal. ‘Normal’ is, of course, decided by the dominant members of society and any attempt to redefine normal from another perspective will be met with significant pushback. People who reject society’s definition of normal are viewed as highly suspect; look at the critical reporting on the Mad Pride movement, for example. How dare those people say they don’t want to take medications? How dare people say that being ‘normal,’ that fitting in with society’s demands, isn’t a big priority for them? For that matter, how dare people reject psychiatricization and the very idea of being ‘mad’ at all?

What this quote tells us is that getting through school, having a ‘good’ job, and getting married are the paragons of normality. People with disabilities who accomplish this triad of goals are role models. We should all aspire to this. Anyone who doesn’t is just giving up. Anyone who doesn’t want a college degree, a good job, and a spouse is clearly a social failure, no matter what ‘reasons’ can be mustered to explain why these goals are not of interest.

Never mind that there are barriers to getting through school. Everyone wants to go to school, right? There is not one single person in this world who is not interested in going to college. Who doesn’t believe that school is something that ou needs. Who has other goals. College is where it’s at! After all, if you don’t go to college, you are an abject failure who will never get anywhere in life.

That’s certainly what society seems to think. People are shamed for not wanting to go to college or for being unable to attend if they do want to go. Let alone people who want to leave high school early; they are informed that they are throwing their lives away and ‘dropping out.’ If you do decide not to go to school, you had better be an accomplished artist or musician or writer or something to redeem yourself in the eyes of society and even then people will express amazement about having ‘gotten so far without a college degree.’

And, of course, everyone wants a job, right? Specifically a ‘good job’? People who do not want to work are lazy. Because working is empowering! Not wanting to work makes you morally suspect and questionable. Not being able to work, even when you very much want to do so, is a moral failing; just try harder! If you’re not working, you must be feeding off the government, which means that you expect the working people to pay for your existence. Should you do something like choosing to live with your parents, you are obviously not realising your full potential.

Marriage, too, is the ultimate social goal. There are no reasons why anyone on Earth would not want to marry. First comes love, then comes marriage1, as we know, so clearly, if you are not married, you are not capable of love or being loved. And, of course, everyone who does want a spouse can get married, so it’s not as though there are any legal impediments to marriage.

These are all things which people believe.

These are all things which ‘advocates’ believe. Note that it’s right there in the quote; people with Tourette’s are ‘sufferers’ and their relatives just want them to be ‘normal.’ Miller is proud of her husband for ‘succeeding’ and being a ‘role model’ and she wants other people with disabilities to ‘succeed’ in the same way. I’m sure it’s well-meant, but it comes across as yet another reinforcement of social attitudes about who is normal, who is a good person, who is worthy.

Who gets to decide who is ‘normal’? Who gets to decide which life goals we should aspire to? It’s the people who write the dominant narrative.

Let’s contrast that quote I used at the opener with a quote from someone who actually has Tourette’s, from the same article:

At a recent public appearance, Koterba met a mother and her young daughter with Tourette’s. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. “No,” Koterba told the girl. “You’re going to have a great life. An amazing life. A creative, beautiful, wonderful life.”

  1. No baby in the baby carriage for you, because your child might be disabled like you.

On refusing to tell you my name

In one of those things that some people will nod along to and others will be confused by, I deleted a bunch of accounts late Monday and locked up the other ones as tightly as I could.


Because someone I work with sent my private email address to someone else. The one that a quick search on any search engine leads to me, directly, with all sorts of things that can get me fired from my job or cut my chances of getting employment.

Specifically, I’m “out” online as being “crazy” 1. I’ve spent most of the past year blogging about having a mental health condition – one that I’ve referred to as being considered “dangerous” to have someone with around.

I’ve tried to be really careful about separating work-online identities. “Anna” is not the name on my ID, and it is not what anyone I work with calls me. Googling my government-ID name and my work-related email address gets you either people who obviously aren’t me, or an unused account on one of the “sort your books” sites. But googling my email address, my private one, leads you here. Or to my now-locked journal. Or to my now-deleted tumblr account.

This is one of the reasons why I get angry when people talk dismissively of those who choose to use pseudonyms online. “Oh,” comes the dismissive sniff. “You’re not willing to stand up behind what you’ve said.” Or “If you really believed that, you’d say it behind your ‘real’ name.”

Women like me – and so many other women and men with “hidden” disabilities, women and men who are trans*, people who are non-gender binary, who are bi or lesbian or gay, people who write about their struggles with racism or sexism or homophobia or bullying at work, people who are otherwise marginalized – risk losing their jobs, having their children taken away from them, risk being attacked in their homes or at work, having their children threatened, just for writing about their lives online.

There are all sorts of reasons people are pseudonymous on the internet. This one was mine. It’s not hard to find people with different, but equally pressing – and even more pressing – reasons for being pseudonymous.

I’m hoping I’ve been overly cautious. I’m hoping this person – who spent Monday sending me threatening emails to my work account – doesn’t notice he now has my private email address. I’m hoping that I look silly and stupid in a couple of weeks when nothing comes of this.

But I can’t count on it.

If you don’t see me posting much for a while, now you know why.

Related Reading:
Once More, With Misdirection
An Object Lesson in pseudonymity and internet privacy
On being a no-name blogger using her real name

Note: Any comments on this post are going to be slow to moderate. I won’t be publishing anything that attacks the person I work with, though, since that person is both not here to defend against such comments, and because I do believe it was one of those things where someone did something thoughtless, rather than deliberately malicious. The results are still the same, though.

  1. I like the term crazy. I embrace the term crazy. I tend not to use it too much online because I know that others don’t like it at all. But I’m crazy, and I’m okay with that.

By 14 April, 2010.    mental health, normality, social attitudes   

Disability Representation in Music (Video), You’re Doing It Right: Janelle Monae’s “Tightrope”

This recent music video from singer-songwriter Janelle Monae is a great example of how not to completely screw up representation(s) of disability. Lyrics are located here.

And a description, courtesy of FWD’s own S.E.:

A black title card reads: ‘The Palace of the Dogs Asylum: Dancing has long been forbidden for its subversive effects on the residents and its tendency to lead to illegal magical practices.’

Two people in tuxedos are seen sitting against a white tiled wall. One is reading a book and the other is playing with a small ball, which eventually drifts up and floats in the air. The reader turns to see it and looks surprised.

Cut to an ominous-looking institution with a sign in front reading: ‘The Palace of the Dogs.’ Bright yellow text reading: ‘Monae and Left Foot: Tight Rope’ overlays the image as bouncy music plays.

Cut to a scene of a nurse pushing a cart full of medications. The scene starts with her feet, in sensible white shoes, and slowly pans up. She is moving down a hallway. As she proceeds, a woman (Janelle Monae) in a tuxedo without a jacket, with her hair in an elaborate sculpted pompadour, peers out the door of her room and then ducks back in. As she closes the door, we cut to her in her room, leaning against the door, and she starts singing.

The video cuts back and forth between the nurse moving down the hall, Monae singing and dancing in front of a mirror, and two ominous figures with mirrors for faces draped in black cloaks, seen from a distance. She eventually puts her jacket on and moves out of her room, softshoeing down the hallway, and other people, also in tuxedos, join
her. They storm into a cafeteria, where a band is playing, led by Big Boi, wearing a peacoat, a scarf, and a snappy hat. Monae jumps up onto a table and starts dancing, while people dance all around her.

As everyone dances, the nurse is seen peering around the corner with an angry expression. The scene cuts to the nurse gesticulating at the black-robed figures, who start to glide down the hallways and into the cafeteria. Monae dances right out of the wall, leaving an imprint of her clothes against the bricks, and ends up in a misty forest in what appears to be afternoon light, where she is pursued by the gliding black figures. Leaves cling to their cloaks. Evading them, she walks through a concrete wall, leaving another impression of her clothes behind, and she winds up in the hall again, where she is escorted by the robed figures. The video cuts back and forth between scenes of her
walking down the hall and the scene in the cafeteria, where music still plays and people still dance.

As she walks, a man in an impeccable suit and top hat walks by and tips his hat to her. She goes back into her room while people dance in the hall. The camera closes in on a table covered in papers and a piece of equipment which looks like a typewriter. She types a few keys, and then touches the papers, which turn out to be blueprints marked with ‘The Palace of the Dogs.’ She sits down on her bed,  rests her chin on her hand, and looks into the camera. The music fades and the scene cuts to black.

I really like what Cripchick has to say about this video: “i love the way that this video A.) critiques psychiatric institutions and B.) shows the ways that institutions/society/ableism polices our whole beautiful creative selves because if unleashed, we are powerful/uncontrollable.”

Additionally, I thought the cloaked figures were an interesting representation of the concept of the looking-glass self; another interpretation might be that they represent Bentham’s panopticon, or the sort of menacing, omipresent societal structure in which we must police ourselves constantly in order to be considered “normal.” Those are just two ways of looking at one aspect of this video, however.

What do you all think?

Words, Language, Context

I had a conversation with Dorian the other day after he posted You Don’t Get It on his personal blog. He said:

My brain doesn’t really work like everyone else’s. So when you say you “know exactly what [I’m] going through”? You don’t, really. You know the same result – a paper not getting written. But you don’t really seem to explain the process that gets me to that point in my brain. It’s frankly kind of agonizing–I want to write that paper pretty badly! You don’t get it.

People didn’t like this comment of Dorian’s. [It also went ’round Tumblr for a bit.] One commenter said:

What exactly do you want people to say when you describe something like this? That you are the only one that goes through it? I can understand the hardship that you may be going through but that doesn’t mean someone else can’t experience too.

When I responded to this, I took the analogy away from struggling to complete tasks and to something that most people will see as a “real” disability [yay, disability hierarchy!!!!].

I do not have a chronic pain condition, nor do I get migraine headaches. When I’m in pain, my joints ache. I feel tired. My muscles are sore. I want to lie down.

I take some over-the-counter drugs, or have a bath, or nap, and usually wake up with little to no pain and go about my day.

When Don talks about his experiences, he talks about being in pain. His joints ache. He’s tired. His muscles are sore. He wants to lie down.

He takes a wide assortment of drugs: two doses a day of 12-hour morphine, a daily dose of oxycodin, the associated drugs to deal with the side-effects of both of those, and a few other things lying around for “breakthrough pain”, one of which we have to sign for before we take it out of the pharmacy, and another of which our regular pharmacy doesn’t carry routinely. He’s a full-time wheelchair user so he can leave the house more than once every few weeks. He spends most of the day lying down.

We use the same words to describe our pain.

Dorian also uses the same words to describe his difficulties in completing tasks that I do. When I’m procrastinating, I’m quite happy to tell anyone who will listen (and several who will not) that I’m procrastinating and having troubles and words won’t come and make my essay/blog spot write itself now please.

But my troubles are not the same as Dorian’s, anymore than my pain is the same as Don’s.

We just use the same words.

My point isn’t that people with disabilities need to use different words or that currently non-disabled people need to use different words. It’s that words come with context. When Don says he’s in pain, he’s typically talking about his chronic pain condition. When I say I’m in pain, I’m typically talking about having sat wrong for a few hours.

Context matters.

By 8 April, 2010.    language, normality, social attitudes   

Jenny McCarthy & Autism Part 2: Let’s All Be Normal (Acting)

When I wrote about Jenny McCarthy last week, I focused primarily on how her “cure” efforts affect parents. Today, I want to write about how “cure” efforts affect children with disabilities.

I feel pretty safe in saying that most people who are born with disabilities, or develop a disability very early in life, have experienced the Pressure To Appear Normal. The ones I have talked to have told me that the greatest amount of pressure to Appear Normal has come, either directly or indirectly, from their parents.

In my case, I remember being yelled at by my father after my parents, unaware of how unwell I was, and still am, read the diary I was required to keep at school. Finding out how unhappy I was that way made my mother cry. After that, I only wrote fictional stories in my required-diary at school. I didn’t want to upset my parents by being “sad”. [My parents may have a different understanding of this event. I’ve never talked to them about it. I also haven’t talked to them about my repeated hospitalizations.]

It took me a long time to convince Don that it was okay to talk about being in pain and how he felt about everything. Like me, his previous attempts to talk about his disability led to his mother being upset. His attempts to appear normal means he went over a decade needing far more assistance than he was getting. He felt like a failure for getting a cane, because everyone would “know” he was disabled. Getting the cane, and now his wheelchair, has led to a drastic improvement to his quality of life – and it didn’t happen until he was in his late 20s.

If you read many of the Very Special Lessons-type news media stories about disability, they will often include a paragraph about how the person with a disability’s parents had at some point pushed for them to be in a “regular” school until, giving up, they finally admitted their child needed more help than they were able to get there. It’s often presented as a sadness, that this child couldn’t “overcome”.

From Deaf children being denied Sign Language until their late teens to grandparents refusing to be seen in public with their autistic grandchildren until they can learn to behave, there is are a lot of messages disabled children receive from their families: Be Normal. Look Normal. Don’t upset us by not being Normal.

I hope my last post made it clear that I’m very sympathetic to the situation parents find themselves in. There are simply not enough resources available to help families. There is constant pressure on parents to explain how they “made” their kids disabled, and what they’re doing to “fix it”. I don’t just think that pressure is there. I know it. I know for certain that Don’s mother still feels guilty for “making” Don disabled.

But children are very aware of the pressure to be normal. And when people like Jenny McCarthy and her ilk push “cures” for disability out there, not only are parents asked why they aren’t administering these cures, children are, either directly or indirectly, asked why they aren’t cured, too.

“Why are you still disabled when your disability is curable?”

“What are you doing to make yourself better?”

Try harder. Do more. It will make everyone else feel more comfortable.

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