Tag Archives: media and pop culture

Recommended Reading for November 2

It’s my favourite Monday of the year! The clocks fell back an hour for most of Canada last night so I feel like I’m up extra early and have lots of time to accomplish things today!

Not that this actually works out in practice.

What I Want To Write To Abled-People But Don’t:

How do you talk to a disabled person?

Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don’t know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don’t mean themselves. I’ve found what they said to be true. My suggestion is to at least try, because often you’ll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone–about the kids’ school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don’t know me, make the same small talk with me as you would with anyone. If you already know me, I’m truly the same person. If you’re feeling awkward about wheelchair use, work on overcoming that; I don’t feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won’t make eye contact, say hello, or speak to me anymore. If you’re so concerned that you’ll be rude that you’ll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:

The Knitting Community Has Assholes Too:

So I posted an innocuous, friendly sort of post in the large and voluble lace-knitting forum on Yahoo about knitters with disabilities which keep them from reading charted patterns. Correction–the knitters themselves had brought up their experiences and frustrations, and after some back-and-forth on the subject, I thought, “Hey, let’s see if anyone’s willing to send polite notes to publishers, en masse, to bring the problem to publishers’ attention.” Cos hey, I love my charts and I find following written instructions really difficult, but that doesn’t mean that knitters who can’t read charts due to a disability should have to miss out on the fun.

Well goddamn, you would not believe the sheer hostility that erupted. One woman in particular posted a rambling screed about how her mother had polio, but “overcame” her disability and got angry when people offered to help her; she then claimed that the knitting world didn’t need to be “fixed,” and that she was being discriminated against. I’m not sure how anyone is discriminating against this able-bodied person; did a brigade of visually-impaired and neuroatypical knitters march up to her house and forcibly steal her charted patterns? (Given how hostile her response was, I think I’d enjoy seeing that!) Language about “preferences” (a very different thing from a disability) and defensiveness about how it’s okay to like charts proliferated in the discussion. If suggesting that all knitters should get to enjoy their craft is such an offensive idea–if the idea of someone else sharing the dignity means, to these people, that there’s suddenly not enough dignity to go around, as if dignity was some kind of limited-quantity resource–then yes, the knitting world does need fixing. Then again, the world in general could use a little fixing, by those standards.

Denise Handicapped:

Last week on Curb Your Enthusiasm, Larry meets a woman named Denise in a coffee shop. They flirt and Larry asks her out. Larry is excited about it… until he sees Denise is in a wheelchair.

Larry is clearly repulsed by the idea of going out with Denise but as he tells his friend Jeff, “I was stuck. I didn’t want her to think I was a bad guy.” Jeff tries to reassure Larry that it’ll be okay to date a woman in a wheelchair by saying, “It’s an adventure, it’s an adventure.” Yeah, Larry, dating a woman who can’t walk is like a trip to see the freaky disabled woman in the sideshow at the circus. Who knows, she may even get frisky with ya. That’ll be adventurous, for sure.

So they go on their date. As Larry pushes Denise up to the restaurant’s entrance he says, “If we’re going to have a second date, you’re going to have to get an electric chair. I’m not doing this again.” Cue symphony of tiny violins.

In the news:

House bill likely to include long-term health care [US]

House health care legislation expected within days is likely to include a new long-term care insurance program to help seniors and disabled people stay out of nursing homes, senior Democrats say.

The voluntary program would begin to close a gap in the social safety net overlooked in the broader health care debate, but it must overcome objections from insurance companies that sell long-term care coverage and from fiscal conservatives.

Female veterans complain of less pain than men [Warning: This is a mainstream media discussion of a medical report.]

Female veterans of the Iraq and Afghanistan wars are less likely to complain of painful physical conditions than their male counterparts, according to a U.S. study.

The study of more than 91,000 U.S. veterans runs counter to what is seen in the general population where women typically show higher rates of chronic pain conditions, including migraines, fibromyalgia and persistent abdominal pain.

Recommended Reading for October 30

#Antidev: Some thoughts on disability “devotees”

The issue of disability devotees — and let’s call a spade a spade here: they’re fetishists — divides the disability community at every level, from academia to, well, Facebook. It’s something women with visible disabilities encounter regularly. And I believe that, while the extremists are relatively rare, the growing acceptance of “devotees” online will trickle down into the broader social constructs around disability.

It’s widely believed that people with disabilities are viewed (in contemporary Western culture, at least) as “asexual.” The truth is more complex. We certainly do not fit the airbrushed-cover-of-Vogue ideal of beauty that is shoved down our throats. But then again, neither do all but a few supermodels on the planet; we don’t consider 99.99% of women as asexual, though. So here’s a key point: differentiating beauty (or physical attractiveness) from sexuality. To be sure, sex can be different and require a bit of creativity and patience, but most women with physical disabilities (at least, the ones I know!) have pretty normal sex lives. Nevertheless, because we can fall so far outside the norm of what is considered attractive, we (like all women) tend to conflate general beauty with sexual attractiveness, making us easy targets for people calling themselves “disability devotees” — sexual fetishists who objectify women with disabilities and reduce them to the sum of their (disabled) parts. Many women with disabilities entertain such advances, or even encourage them; when you’ve lived in a society rife with ableism it can be easy to believe that your disability defines you (and as a woman, that your sexuality defines you), and fetishists play right into that mindset.

Personal Situation

Now that I know all these things about my father I can‘t stop thinking about it (especially the new info in addition to the terrible tirade from him the day before). I don’t want to live with him anymore, but I don’t really have any other options. I need constant care and there’s no one else in my family who is able to take care of me. I know everyone says this, but he truly does love me and wouldn’t be able to take care of me like this if he didn’t. Out of everyone in my life he’s given above and beyond anyone else when it comes to my caretaking – he’s here full time and any one else is less than once a month. But I can’t stand to be around him anymore. I have so much anger. I’m angry how he treated my mother, and indirectly caused her to hurt me. But I’m angry at my mother for directly hurting me. I’m angry at my father for having such an anger problem that we had to be afraid of it. I wish I was healthy so I could just move away, but my disability is so severe that I really can’t do anything for myself and need the constant care. I don’t want to go to some nursing home – I’ve heard too many stories about that to trust it.

One time in the past when he exploded emotionally, I called a nearby shelter because it was having such an emotional impact on me. I told them about my physical situation and they said that they were not handicap accessible and referred me to another shelter. Neither shelter would be able to care for me in the way that I need it. I just don’t want to be alone in this world – it‘s not just emotional, I need a someone to physically protect me because I am that fragile. It sucks that my family sucks, but they’re all I’ve got right now and they’ve helped me in a lot of other ways.

In the news:

Via email from Ira G.: Minds Interrupted: Stories of Lives Affected by Mental Illness:

The three will be among eight Baltimoreans who will discuss the ways in which mental illness has wreaked havoc with their lives in a program called “Minds Interrupted.”

Participants wrote and edited their intimate, sometimes funny, often harrowing tales at a recent workshop that included tips on performance skills. Tickets will be sold to the show, which is being held at Center Stage, and which was modeled on the popular Stoop Storytelling series in which nonactors tell seven-minute-long anecdotes about their own lives.

The hybrid nature of “Minds Interrupted” can be perplexing: Is the evening a high-minded attempt to publicize a vexing and misunderstood social problem, or is it entertainment? And can the two categories successfully be mixed?

Five benchmarks for social assistance [Canada]

The next bold move the government must make is to stick to its guns on a comprehensive review of Ontario’s broken social assistance system.

The commitment to review Ontario Works and the Ontario Disability Support Program – made in the province’s poverty reduction strategy last December – has been agonizingly slow to get off the ground.

With the first anniversary of the strategy quickly approaching, more and more Ontarians are being forced to deplete their savings and join Ontario’s swelling welfare rolls.

As the province moves to more effectively employ resources to meet people’s needs and promote economic recovery, we can no longer afford to wait.

Student beaten to death in his Sac State Dorm Room

Scott Hawkins had Asperger syndrome, a form of autism, “that made him very obsessive about his favorite things,” his father said. He especially enjoyed studying ancient European and Middle Eastern history and was hoping he could graduate with a minor in one of those areas, his father said.

“He could go on and on about the history of Rome or the reasons that the Greek empire did this or that,” Gerald Hawkins said.

The attack was reported just before 2:30 p.m. Wednesday when one of the dorm’s resident assistants called police after hearing a loud disturbance coming from one of the suites.

Recommended Reading for October 29

Sexy with a Disability:

It’s not like there are many role models out there in the media. The disabled are rarely portrayed as sexy. Brave, yes. Melancholy, sure. Angry about their lot, check. Objects of concern and pity (stop calling me “special”!). But sexy? No. The hot babe who gets the guy isn’t limping toward him, gnarled fingers grasping his strong shoulders as they kiss. And if she is in a wheelchair, it is only temporary.

Ally Issues: Feeling Useless:

At the same time, I have this nasty prickly little feeling inside me which tells me, “what right do you have to write about this issue? You’re perfectly able-bodied. You’re so able-bodied you’ve been holding write-ins at the Paperchase Cafe for years. It’s not like you’ve ever done anything to be a good ally to people with disabilities.”

The horrible thing is that the voice is right.

I’m wondering though, if it would be worse if I let the voice hold me back. That I have to wonder is, I think, pretty bad. Able-bodied people can talk about disability issues, and do, all the time. I’ll probably fuck up at some point, but that happens, right?

A piece of ableist language I could really do without

It’s that dreaded question, upon meeting: So, what do you do for a living?

It hurts. And what’s worse, people often don’t stop there; they keep on asking. ‘Oh, you don’t work? Why not? So are you on the dole then? Are you looking for work? But how do you afford to live? A pension? What are you on a pension for?”

Honestly, sometimes I just want to tattoo it on my forehead: “Hi, I’m Cinnamon Girl, and I’m insane. Thanks for the tax dollars!”

You see, I have a psychiatric disorder, and receive a disability support pension as a result. I don’t work to make my living. I also don’t want to disclose to every last person I meet that I have a mental illness. But, with that loaded innocent question, that’s pretty much what I’m forced to do.

Bones and Invisible Disability:

To be clear, Brennan’s Asperger’s is never directly mentioned by her co-workers. Her social awkwardness, typical of the syndrome, is frequently the punchline of jokes or leads to the repetition of one of Brennan’s favorite phrases, “I don’t know what that means.” However in interviews, Emily Deschanel, the talented actress who plays Brennan, often states that her character does have a mild form of Asperger’s.

The lack of awareness Brennan’s co-workers show about her Asperger’s, leads me to believe it could be considered an invisible disability. At first glance, Brennan appears “normal” and the only way her co-workers would know about her Asperger’s is if she tells them and then proceeds to advocate for her unique needs. In fact, she has made steps towards self-advocation already, at one point last season asking her psychologist, Dr. Lance Sweets, to help her understand social cues and to read facial expressions.

Dealing with disability is fine – it’s the phonecalls that shit me!

Peopel who don’t know you gasp and think life must be unbearably dificult, draining, and emotionally tough when you have a child with a disability – but to be honest, it’s the endless phonecalls, wrangling and organisation that can shit me to tears. Picking up Miz M from childcare yesterday, where she beamed delightedly and kicked her little legs and waved her arms, that was lovely. Trying to help her eat slices of mango was sticky but, hey, just fine. Making the fourth phonecall to the same organisation to try to organise for her mobility device to be fixed, on the other hand, brought a hot flush of frustration to my face and tears of irritation to my eyes. Put on hold while the woman I needed to speak to was on another call, after which the original unhelpful phone-answerer got back to me and said oh, she’s left now, and won’t be back till tomorrow. This, at 9 am.

Finding Myself in Unexpected Places

On the way home from work the other day, the classical music station in Dallas, WRR 101.1*, played a really good performance of Beethoven’s Bagatelle for Piano in A minor, WoO 59 “Für Elise”. It’s pretty, of course, which is all it needs to be. But every performance (and every work of art and every published document) is an act of communication among the composer, the performer, and each person sensing it. Every person involved in every act of communication brings xer own perspectives and experiences to the social transaction.

I mention this to provide some context for how I reacted to this particular performance of this piece. I’ve it heard scores of times, probably, but I don’t know if I have since I’ve been thinking of myself as a person with a disability. The parts of it that rise to no real musical resolution felt, to me, like the steps of a dancer with a mobility impairment moving across a stage. Xe walks with a gait and doesn’t move with the precision of a physiotypical dancer, and sometimes it feels as though xe might fall (when the music rises in pitch and stops short of finishing the phrase to return to the core, lower-pitched theme), but xe dances anyway. And xe and xer dance are beautiful anyway. It could’ve been someone a lot like me.

It felt pretty damn good, actually.

Has anything artistic — and I include popular culture in art — recently (or memorably but not so recently) made you feel included? Even if it wasn’t necessarily the creator’s intent?

* It’s owned by the city and actually makes a profit. Naturally various Republican mayors and city council members have called it unfair competition (not that there’s another classical music station in the North Texas broadcastmarket) and have tried various times to get it or the transmission station or the broadcast license sold off. Fortunately for us, they’ve been unsuccessful every time.

Recommended Reading for October 28

Join Marlee Matlin in Demanding Captioning of Online Video Content

Academy-Award-winning actress Marlee Matlin has been using her Twitter account to actively lobby for captioning of all the digital video content that is flooding onto the Web. The issue has rightfully hit a boiling point for the deaf community because Netflix and other services are now streaming video online without captions.

The National Association of the Deaf sent a letter to Netflix Oct. 5 complaining about the lack of captioning for “The Wizard of Oz,” which was available for download free at the Netflix Web site as a promotion.

Matlin points out the irony of a recent video about the Helen Keller statue unveiling at the U.S. Capitol on the CNN Web site that has no captions!

Related: How to add Subtitles and Translations to your Vids, Captioning Sucks!.

Ableism in 30 Rock [Includes an embedded video from HULU that is not available outside of the US]:

A lot of feminists love 30 Rock. As they should: it’s a funny show, and a rarity for television – a women-fueled enterprise with a two main female characters, written and conceived of by a woman. That is Cool, full stop. And 30 Rock has many deft explorations of the many facets of being a white, middle-class, straight, woman with able privilege. But persons with disabilities don’t fare quite as well.

30 Rock trades on ableism on an almost episodic basis. The show’s disrespect towards folks with disabilites, particularly those with visible disabilities, is constant and unrelenting from side gags to b-plots to regular characters. 30 Rock constantly places bodies with able privilege in a position of supremacy above bodies with visible disabilities through humiliation and devaluation. Its abuse of persons with disabilities in the name of comedy goes beyond the casual ableist language like “lame” or “retarded”. Such language is unfortunately ubiquitous to even shows that have been critical of ableism (eg, The Office has critiqued ableism through Michael Scott’s typical obliviousness on a couple of occasions, but, as in life, “lame” and occasionally “retarded” is still a consistent presence) but 30 Rock’s ableism is constant, humiliating, and dehumanizing.

An Example of an Article about FSD [FSD = Female Sexual Disfunction]

I’m still not fully understanding the claim that FSD is profitable. If that’s the case, why is it so difficult for me, someone who falls into the pain category, to find a doctor who is equipped to handle me? My experience is that often, my first line of defense doctors get tired of seeing me after I don’t respond to conventional treatments. I think right now my local gyno probably never wants to see me again.

The article goes on to talk about hysteria. For the most part I don’t find this section of the article to be inherently problematic. Except for the part about “pelvic congestion,” being in quotes, since it is mentioned as a real thing in Heal Pelvic Pain (p. 16)

Identifing:

But the real reason it followed me and stayed there in the back of my mind was the times I thought, “Wait. That’s me.” And then my guilt complexes came in full-force, telling me no, you can’t call yourself that, that’s for people with real problems, any problem you have is just in your head. And maybe most of them are in my head, but well, it doesn’t make them any less real. It doesn’t make it any less hard to me to function or to try and figure out how to fit into society. It doesn’t make my very concrete limitations disappear.

In the news:

Clem7 Tunnel Labeled a death trap for the disabled [Australia]:

BRISBANE’S Clem7 tunnel could be a death trap for the aged and infirm, a disability group has warned.

Queensland’s Spinal Injuries Association said the 4.8km-long tunnel’s emergency exits were too far apart and too narrow for people with mobility problems to escape an underground disaster.

Mr Mayo argues there are no design rules for tunnels but believes this infrastructure should follow the Australian Building Code which mandates emergency exits at every 60m in buildings.

The Pain of House

Hugh Laurie as Dr. House posed as a Caduceus with wings and two large snakes wrapped around his body on a blue field.  Caption reads "Incurably Himself".
Hugh Laurie as Dr. House, a white man posed as a Caduceus with wings and two large snakes wrapped around his body on a blue field. Caption reads "Incurably Himself".

I am a pop-culture junkie.  If you have been playing along at home long enough this is common knowledge.  I have been a big fan of House, M.D. since it’s poorly lit pilot.  I am simultaneously appalled and amused by his crass behavior.  Even the best feminist in me laughs and fairly inappropriate moments.

I have seen and read plenty of critques concerning Dr. House and his manner.  I have chewed out my share of doctors for acting like him as if it makes them seem clever.  He is a character that is worth critiquing on many levels and for many reasons from many points of view.

What I haven’t seen is a lot of criticism of the characters assembled around House.  From Dr. Wilson, or Dr. Cuddy, or the myriad staff members he has had around him (yes, even Dr. Cameron-Chase) I have watched for nigh on five seasons now as all of the people who claim to care about him have done little more than chastise and concern troll his life.  Most notably, his addiction to Vicodin as his chosen method of pain management.

A repeated theme throughout the series has been watching person after person in House’s life try to trick or otherwise convince him that he should quit taking Vicodin and learn how to deal with his pain.  They constantly badger him about his addiction, and will go to great lengths to get him to quit taking his pain medication.

Only a person who has never experienced chronic pain would dare criticize a person for their pain management.

Because, like it or not, Dr. Gregory House is managing his pain.  Sure, he is an addict.  There is little argument there.  The character admits it freely.  In his own words he says that he takes a lot of pills because he is in a lot of pain.  Whatever your feelings on narcotic medication it is a proven method for making intense and chronic pain manageable, and a down side to that is that narcotic drugs can in fact be dependency and/or addiction forming.  The presence of an addiction does not take away the fact that the pain beneath it is real.  When a doctor and a patient together decide to pursue pain management via narcotics such as Vicodin they will weigh the pros and cons of such treatment.  One of the cons that is weighed is the fact that a person can develop an addiction to a drug and a tolerance that will probably mean their intake will increase over time.  As with any course of treatment the costs must be weighed with the benefits.

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Photo: Hugh Laurie as Dr. House, a white man in a presumably porcelain bathtub filled with orange prescription bottles, dressed in a grey suit with his cane.

House is able to function as a result of the Vicodin to which he has become addicted.  He is able to be independent in moving and living, not housebound (no pun intended) by his pain.  He is able to hold down his job and do it with the skill through which he receives his notoriety.  His course of pain management gives him a life and independance that many of us living with pain or other disabilities are hoping to achieve.  It might not make him a happy ray of sunshine all the time, but neither does living in agonizing pain all of the time.

It is very condescending for a person who is not living in pain to assume that they know better than that person how to manager hir pain.  The way that I see House’s collegues and the people who could pass for his friends treat him over his addiction and the way he manages his pain strikes too close to the way I feel most doctors and friends of those of us living in chronic pain will treat us.

Criticize the way he behaves to his subordinates.  Criticize the way he treats those closest to him.  But if you don’t know what it is like to live with chronic pain, don’t criticize his decisions as to how he manages his pain.  If it’s not your body, frankly, it’s not your business.

Originally posted at random babble…

Guest Post: “There’s something wrong with Esther”: Disability, deception, and Orphan

Tera lives in the American Midwest with her mother, five cats, two
parakeets and several imaginary friends. She is neurologically
atypical, a lover of cartoons and scary movies (equally), asexual, and
a gamer dork. Her Pokemon army is probably more awesome than yours.

Tera regularly blogs at Sweet Perdition.

Orphan movie poster: A young girl with her hair in pig tails is pictured.  She is wearing an old-fashioned gingham-style dress.  Her eyes are hidden in shadow, and she has a menacing appearance.  Across the top, it reads There's Something Wrong With Esther.  Across the bottom, it reads Can You Keep A Secret?  The image is meant to be very disturbing. - Description Text by Anna.'

WARNING: Major spoilers for the movie Orphan, including the twist.

Let’s play a game:

A little girl–five years old, maybe six–rushes out of a building. The sign above it says: “School for the Deaf.” She hugs her mother, who greets her in American Sign Language (“Hello, Max!”) They sign cheerfully about Max’s day; at bedtime, Max wants her mother to read her a story. It’s a picture book about a child whose baby sister “went to Heaven” before coming home from the hospital. (Max’s baby sister, Jessica, also went to Heaven before coming home from the hospital; her mother doesn’t want to read this story, but Max insists). Story finished, Max removes her hearing aid, turns off the light, and goes to sleep.

Max’s sister, Esther, is nine years old; the family adopted her just recently. Esther says she is “different.” She’s from Russia, but speaks perfect English with a slight accent. She cuts her food perfectly–so perfectly that brother Danny thinks it is “weird.” At school she wears gorgeous, old-fashioned dresses when other girls are wearing jeans and tee-shirts. She paints like a gifted adult. While taking baths, she sings a song that’s way before her time: “That’s the story of, that’s the glory of looooove!” She understands the word “fuck” as more than just a naughty word that adults say sometimes (“That’s what grownups do. They fuck.”), expertly loads a gun, puts on a black dress and make-up and tries to seduce her adoptive father. (“What are you doing, Esther!?”)

What is Max’s impairment? What is Esther’s? And why can we recognize Max’s within five seconds of meeting her, while it takes us nearly two hours to learn–pardon the phrase–what is “wrong with” Esther?

Continue reading Guest Post: “There’s something wrong with Esther”: Disability, deception, and Orphan

Calendar Girls: Sexification Strikes Yet Another Serious Health Condition

[Author’s note: I’d been meaning to submit this piece somewhere since earlier this year, but never got around to it. I know we’re almost finished with 2009–so focusing on a charity calendar may seem a bit old meme, at least in internet time–but some of the issues that this campaign raises are, as they say, timeless.]

When the words “chronic pain condition” come to mind, not many people can name a charitable project that is trying to raise awareness while also dovetailing nicely with current mainstream standards of beauty. British former model Bianca Embley has set out to change this, at least in the UK. After a work-related accident that resulted in a diagnosis of severe fibromyalgia, Embley was left unable to work. According to her website, Embley “aim[s] to raise awareness of Fibromyalgia, specifically in the press and media, but also by supporting awareness campaigns through UK Fibromyalgia charities and organizations” with the rather risqué Polka Dot Gals 2009 Calendar [NSFW]—a 12-month compendium of artistic nude and nearly-nude portraits of female models, including one who, the website crows, has posed for such illustrious publications as Maxim and Playboy. All of the photographs make use of the organization’s official colors (black polka dots on a yellow background) in various creative ways. The calendar and its photos have garnered a fair amount of press coverage in Great Britain, in addition to quite a few celebrity endorsements. While this project’s goal is certainly one that means well, the project also brings questions of conventional female beauty, its marketability, and intended audience to the fore.

The Polka Dot Gals project seems to have an almost-exclusive focus on a very specific type of beauty that’s almost a Feminism 101 cliché: the young, white, thin, fully made-up and free of body hair paragon of femininity that is so overexposed in modern consumer culture, advertising and—dare I say it—pornography. As many a feminist activist has warned us, this type of “beauty” sells; at the same time, it is this sort of representation of female beauty that feminists have decried since the 1970s.

However, what makes this criticism more complicated is that Embley herself posed for the calendar, and though she may appear able-bodied in these images, she is not. The photographs that feature Embley have her posed [link goes to an article that appeared in The Sun; NSFW] in ways that suggest that she is able-bodied, at least in part; in one shot, she stands fully nude, her back to the camera, as she clutches a martini glass in one hand and her cane in the other. Taken out of context, this pose does not seem to allude to her condition in an obvious way—and the photograph, in fact, looks strikingly similar to many soft-core images that have come before it. The message seems to be twofold: 1) Women with chronic illnesses can still be sexy, albeit in ways that are approved and encouraged by the culturally sanctioned gold standard of sexualized, “feminine” display; and 2) This sexiness can be channeled into photographs for public display and consumption, so long as the goal is to “raise awareness” of chronic illness and disability.

A few of the poses struck by these ostensibly well-meaning calendar girls don’t seem to have much to do with the condition, or with disability, at all: former Playboy model Danni Wells, in her photo, wears both a coquettish smirk and a yellow and black polka-dot ribbon that (just barely) covers her naked body. Were it not connected with Embley’s campaign, the image could plausibly be a banner ad for a porn website. Wells’s personal stake in the campaign stems from the fact that her grandmother lives with fibromyalgia. (One might wonder how Wells’s grandmother feels about her granddaughter’s participation in the project, especially given the nature of the images that make up the calendar.)

Such images bring to mind the question of intended audience; according to the website, a “portion of the profits” will go toward raising awareness of the condition in the UK, which begs the question of who, exactly, might purchase this calendar. The fact that the calendar is full of photographs that, by and large, seem designed to appeal to a heterosexual and possibly able-bodied male audience, is obviously problematic in a feminist sense. Given that fibromyalgia is a very gender-skewed condition (the ratio of females to males with the condition—at least within the US—is nearly 10 to 1), it appears that projects which aim to raise awareness of the condition in new and interesting ways have been a long time coming. The goals of the Polka Dot Gals are admirable, and the calendar may bring some much-needed attention to a condition that lacks a public face, but the project’s uncritical reproduction of the white, attractive and (seemingly) able-bodied female body as body-on-permanent-display—no matter if the body in question is wrought with constant pain and fatigue—is still troubling.

Portrayals in Pop Culture: Adam

In August the wife and I saw Adam, a romance featuring a person with Asperger’s Syndrome and a neurotypical. And it was really rather good, especially measured against other portrayals of autistic persons in popular culture. It is always astonishing how much of myself I see in depictions of people with AS, even when the wife isn’t nudging me and whispering “You so do that.”

It’s true, I do. I’m older than Adam and my (admittedly self-diagnosed but dude it really fits) version of the autism is a bit different than his. But we still share a lot of traits. Tinnitus, check. Visual distortions? Yup. Difficulty with officials and paperwork? Yes. Socially inappropriate questions? Oh deep fried shit on a stick yes. Rage? HULK MOIRA SMASH!

Of course, when I was a wee bairn, Asperger’s Syndrome as a diagnosis hadn’t made it to the U.S. yet and wouldn’t until 1992. Autism, then, meant you didn’t talk and I talked like anything. I didn’t talk like a kid. My family still tells these things as cute baby stories: I taught myself to read by the time I was three and read compulsively. If there was a cereal box on the table I had to read everything on it. I would grab my crossed ankles and rock on my back for hours at a time. The day I found out what penises were I went around the neighborhood asking everyone if they had one. I did not know how to make friends. I sort of wanted to, but I was most comfortable in structured settings like Scouts or, later, role-playing games. It was (and remains) difficult for me to look people in the eye and to touch them and I was constantly being told to do that and to shake hands firmly. I needed to look more like I was paying attention in class. I actually was paying attention as was demonstrated every time a teacher asked me a question and I answered it correctly; I just didn’t look like I was paying attention and that made them angry.

When I am very upset I stop being able to talk. I pick compulsively at my skin. I don’t interview well — I’ve never gotten a job by applying and interviewing for it. Every job I’ve ever had I’ve gotten because I started as a temp and they kept me. I’m not good with figurative speech or most kinds of humor. If I get something in my head I want to say it will come out.

So, Adam. His is the version that has more externally-directed rage. (Mine is turned mainly on myself, hence the scars and the hospitals and becoming a veritable sommellier of psych meds.) It’s done very well. Hugh Dancy spends a lot of time with reddened, tearful eyes, but he has suffered a series of very large life-changing events. He does a pretty good job portraying a person with AS without making Adam a straight-up freak. It’s clear that Beth (Rose Byrne) loves him at least partly because of (and also in spite of–I know I’ve been difficult to live with at times) the way his brain works. Adam-the-character is rather luckier than most of us; he grew up upper-middle-class in Manhattan, inherited a fair amount when his father passed (before the movie even starts, it’s not a spoiler), he gets lots of interview coaching and gets his well-paid dream job.

It’s not exactly the median experience. It can and does happen, but many more of us work a series of low-end, low-paying jobs until our social difficulties get us asked to move on (which has happened to me, though it was also tangled up with transgender issues). My résumé is a very model of stability by AS standards despite the occasional long gaps in it.

Sorry. It’s hard to talk about the movie without talking about AS in general and about me. It’s a sweet movie. It’s nice to see someone like me as something other than a socially crippled freak or the larval stage of a serial killer. It’s just the movie version of an autistic person’s life: charmed and ultimately successful (socially, financially, romantically) despite occasional setbacks.

Of course I consider my life moderately successful and I’m looking at not working at all soon. I have a family. I’m loved. I’m still poor.

There’s one thing I’d change about Adam-the-movie: After Adam-the-character’s father dies, a guy named Harlan (Frankie Faison) fills in as father figure. The role edges into Magical Negro territory. It didn’t have to be this way. Harlan, you see, is a locksmith. He drives a beat-up green van and wears a gimme cap. He is the only working class character with a significant role in the film and the only person of color with a significant role in the film. I suspect that since Adam was given a folded flag at his father’s funeral (again, not a spoiler, it’s the first scene), Harlan knew Adam’s dad in some sort of uniformed service and stayed in touch after despite Harlan being a black locksmith and Adam’s dad being a white professor at Julliard.

I’d have made Harlan one of Adam’s dad’s colleagues from Julliard. A piano instructor or something. Put him on an equal footing with regards to social and economic class with the white people, instead of the working stiff they did. I can’t tell you how many books and movies I’ve seen the same damn thing in. Hey! Creative people of America! There are rich black people! They go to college! They teach at college! Put them in movies and TV shows and books already, you crypto-racist falsely-inclusive jerks