I am conflicted, to put it mildly, about this latest project in which singer and pianist Amanda Palmer has involved herself (full disclosure: I am a fan of Palmer’s music). For those who need a refresher, she and fellow musician Jason Webley are performing together as Evelyn Evelyn, a fictional set of conjoined twins and former circus performers with an elaborate past who reside in (of course!) Walla Walla, Washington. The group’s upcoming self-titled album seems to be getting quite a bit of press in the indie world. Part of the press release reads as follows:
Rather than being limited by their unique physical condition, the Evelyn sisters prove that two heads are indeed better than one. Audiences will marvel at the twins as they dexterously perform their original compositions on piano, guitar, ukulele, accordion and even drums.
Ah, yes! It’s the “overcoming disability” trope, with a heaping side of totally unexpected and not-at-all-stereotypical circus-freakdom. Might Evelyn Evelyn be musical Supercrips?
Unsatisfied with the grind of circus life, at the age of nineteen the twins decided to explore a solo career. It was then that they were discovered by Amanda Palmer and Jason Webley, who heard the twins’ music on MySpace. Webley and Palmer encouraged the twins and offered to help them record a proper album.
The album will be accompanied by a full US and European tour and – later this year – a graphic novel about the twins’ inspiring life, illustrated by Cynthia von Buhler and published by Dark Horse Press.
The stereotypes about disability here are pretty well-worn: according to this (fictional) backstory, the twins were “discovered by” and need “help” from two abled individuals, Palmer and Webley, to realize their musical potential. Add to this their “inspiring” origin story — which is fodder for a graphic novel tie-in — and you’ve got yourself one hell of a three-ring circus of disability stereotypes.
Thus far, it looks like Evelyn Evelyn’s primary aim is to be “inspiring” to abled folks (and to be a bit of creative fun for Palmer and Webley). The three songs currently available on MySpace only serve to continue this trope; “A Campaign of Shock and Awe,” in particular, casts the twins as “the 8th wonder of the natural world.” Good to know that even fictional people with disabilities are not exempt from being cast as “wonders” from which non-disabled people can draw inspiration and “marvel” at. Sound familiar? Add in a dash of hipster ableism and you’ve got something that looks positively transgressive, especially in comparison to the rest of the music industry.
Unfortunately, Evelyn Evelyn seems like a project that is far from actually being transgressive, even given the initial appearance of said transgression (because what’s more shocking and weird than conjoined twins, at least according to abled culture?). The project, as far as I can tell, makes no reference to the ways in which actual people with disabilities are treated in Western culture; this probably seems like a tall order for any musical project, but there is a chasm of difference between at least acknowledging that there are people like this (in this case, conjoined twins) who do exist and that they probably are affected by ableism, and outright appropriation of this uniqueness in the name of art. Certainly, Evelyn Evelyn is fictional, and while Palmer and Webley are not required to make any sort of political statement, the seeming lack of awareness that there are actual conjoined twins and that they do not only exist for abled artists’ dressing-up-and-performing purposes is rather troubling.
The larger cultural context of treatment of real people with disabilities, too, is conveniently forgotten (see the lyrics to “A Campaign of Shock and Awe”); the twins seem to exist in a world that is completely free of ableism (in forms subtle and not), harsh social treatment of PWDs by abled people, and pernicious, damaging stereotypes. This is particularly disappointing given that Palmer has written some great, quite un-stereotypical songs about PWDs and people with mental health conditions (one of which I wrote about in a blog post for Bitch Magazine).
I am a person with disabilities. I am a music fan. I am (sort of) an artist — one who mostly does graphic work about the disabilities of non-fictional people. However, Evelyn Evelyn, as a multimedia project, seems designed to keep people like me — real people with disabilities — out; this is not a new thing, considering the attitudes that folks in our culture hold about people with disabilities and their acceptable social roles. There are other, more creative ways to portray people with disabilities that don’t rely on facile stereotypes or on the ways that PWDs are already represented in popular culture. Representing Evelyn Evelyn as variously inspiring, freakish, weird and a “wonder” just reinforces existing stereotypes about PWDs, while ignoring the cultural context in which the project was conceived; while Evelyn Evelyn may be artistic and, at first glance, “different,” the attitudes beneath the project’s surface seem awfully mainstream.
Special commenting note: First-time commenters, please read and abide by our comments policy. Kindly refrain from commenting if your argument consists of any of the following: “You just don’t get it,” “You do not understand art,” “You are taking this too seriously,” “Evelyn Evelyn is not real, therefore the stereotypes about disability examined here do not matter,” “Justify your experience and/or disability to me, NOW,” “Why are you criticizing Amanda Palmer? She is brilliant; how dare you!” I am familiar with all of these arguments — please be aware that they will probably not add anything to the discussion because they are classic derailing tactics, and I will most likely decline to publish comments that utilize the above arguments.
Similarly, this is not a thread in which to discuss how much you like or dislike Palmer or Webley’s music in general; comments to the effect of “Her/his music sucks and here’s why” will not be allowed, as they are also derailing.
The other day I went to see the film version of my favourite book, Audrey Niffenegger’s The Time Traveler’s Wife. I was expecting a more gooey version of the book, and was a little apprehensive about the treatment of disability, but I wasn’t expecting what I got.
The time traveller of the title, Henry, travels due to a genetic condition called Chrono-Impairment. He experiences this as inconvenient and unpleasant: he is pulled out of his daily life and often to quite painful times in his past.
In the book, part of the way Henry convinces geneticist Dr Kendrick that his time travelling is real by giving the latter information about his son, who is soon to be born. One of these details is that the son, Colin, has Down Syndrome. And just about everything said about him is along the lines of what Henry says just after the birth: ‘I’m sorry about Colin. But you know, he’s really a wonderful boy.’ Dr Kendrick’s reaction to his son’s ‘abnormality’ is less pleasant.
But Colin doesn’t appear in the film. There’s a part of my mind that was glad we missed what would surely be a nasty mix of okay and fail. But with his exclusion, we also missed the presence of half the disabled characters in the novel. And I know you have to make changes for film adaptations, and that’s fine. Though it’s curious how all the queer characters and most of the non-white characters were taken out for the film version, too… (Which is, again, good on the one hand because you miss all the painful stereotypes, but bad on the other as, you know, there are few non-white or queer people.)
But I said half the disabled characters, so let’s address the other one: Henry.
In the book, Henry gets hypothermia when he ends up time travelling to a park in winter. He loses his feet and spends the rest of the novel in bed, then in a wheelchair. In the film, only one of Henry’s legs is affected, and he keeps it. Both Henry and Dr Kendrick emphasise that he’s not going to be in the wheelchair for long, If it had just been Henry saying that, I would have thought, okay, that’s a reference to his knowledge about his premature death. But as Dr Kendrick says the same, and as Henry never stops using the wheelchair until his death, there’s no point in saying it at all. Except to reassure the viewers that Henry is not one of “those people” and this is just a temporarily blip, that is. It’s okay, everyone, don’t panic; Henry isn’t disabled.
Henry learns about his upcoming death (oh, time travel) not long before getting hypothermia. I am not a fan of the emotional line formed here; to me the emotional message, if not the letter of the thing, is that disability is a stage in dying, that disability is a kind of pre-death. Which, come on. Henry isn’t dying up until he is killed. In the book at least the particular importance of Henry’s needing to be able to run is explained (it has often been a matter of survival when he is thrust about in time) (though it actually isn’t in any of his travels following the loss of his feet). In the film, we just have abled to disabled to dead. It leaves a bad taste in my mouth.
But what I found most strange in the discrepancy between the book and the film was Henry’s attitude. In the book, Henry is largely miserable once he loses his legs. In the film, Henry is a Good Cripple. It’s a pretty big contrast, and again the film takes out emotional complexity and loses the opportunity to highlight the marginal.
But now we come back to Henry’s time travel, and here we hit some more complexities. Can we call our chrono-impaired hero disabled? Within the world of the text(s), Henry doesn’t appear to treat it as such, as best I can recall from both texts. But irrespective of whether Henry or those around him understand him as disabled, as viewers and readers we can draw out a fair few messages about disability. There are all sorts of nebulous ideas in my head on time travel as impairment, and Henry’s search for a cure, and the issues with Clare and Henry having a baby. To be honest, I haven’t settled my feelings on this. But here are some ideas in Time Traveler’s that slot into popular ideas about disability…
… and some of the difficulties Henry faces…
What else can you think of?
So the novel and the film versions of The Time Traveler’s Wife have problems in different respects. But I’m finding the differences between the novel and the film the most interesting of all.]]>
I would like you to imagine that you are a film producer, or perhaps a television producer. You are making something, and you have decided that since an estimated 20% of the population consists of people with disabilities, that maybe there should be some people with disabilities in your finished piece. So, you decide to include them. And you do your due diligence; you consult disability activists, you educate yourself about how they should be portrayed, you make sure that their characters are fully integrated into the story, that they aren’t tokens.
This already makes you a standout in the world of film and television production, because, as a general rule, the portrayal of people with disabilities in film and television is atrocious. Some independent films might be better, but mainstream media, for the most part, tokenizes people with disabilities when it deigns to include them, and often manages to be extremely offensive about it.
Now, I would like you to imagine that you are a casting director preparing casting calls for this wonderful new work in which people with disabilities will be portrayed. You’re doing writeups of the characters for release to send out to agencies, or maybe you’re even preparing an open casting call.
Are you going to actively request that actors with disabilities try out for the roles? Or is that not important to you?
Judging from the current portrayal of disability on television, I’m going to bet that our fictional casting director is not going to actively pursue actors with disabilities to play disabled characters. Instead, they’re going to go for the crip face. I was going to draw an analogy here, and ask: If you were a casting director casting a Black character, would you solicit Black actors? Or would that not be important to you? Except that I see blackface continues to be alive and well, so, apparently, the answer again is no, it’s not important that Asian actors play Asian characters, that Black actors play Black characters, that male actors play male characters, that disabled actors play characters with disabilities.
This is annoying.
It’s annoying, for one thing, because I would like to see more people with disabilities on my screen, and because I would like to see them specifically played by actors with disabilities. But no, it’s too hard to find disabled actors. Or, they’re too hard to work with. When an actual actor with a disability is allowed onto a television set playing a disabled character, it’s played like someone’s being done a huge favour, and aren’t we inclusive and progressive, casting a disabled actor to play this part!
I can think of only a handful of disabled characters I like. One is Bonnie on Jericho, played by Shoshannah Stern. Bonnie is Deaf, as is Shoshannah. One of the things that’s interesting about her character is that when Shoshannah tried out for the role, Bonnie was not written as Deaf. Apparently her reading was liked so much that they changed the character. And they did a pretty good job; Bonnie is a fully realized character, her Deafness is not a token, and in fact it proves to be an asset at times.
Bonnie shows how it’s possible to integrate a disabled character into a piece without making a big production out of it, without making it feel forced and fake, without being disrespectful. Her Deafness isn’t framed as a terrible tragedy or a magical special gift from God, it’s just a fact. It’s great to see other characters signing with her, instead of forcing her to read lips all the time, although it’s kind of unfortunate that the DP apparently thought it would be a good idea to not show the hands half the time during signing scenes. It’s great to see Bonnie saying “I’m Deaf, not stupid,” reminding people that she can read lips and that, therefore, it’s not a good idea to talk trash about her because you think she can’t understand you. (Aside from the fact in general that you shouldn’t be talking trash about people even when you know they aren’t around to understand.)
Deafness is part of what makes Bonnie Bonnie, and considering that the character wasn’t supposed to be Deaf at the start, I think that’s a pretty great accomplishment.
But…one disabled character does not a revolution make. Why is it so difficult to add characters with disabilities into the world of film and television, and once they’re there, why is it still acceptable to use temporarily able bodied actors in crip face to play them, rather than, you know, seeking out disabled actors?
There are a lot of superbly talented actors with disabilities out there who do great work when they are allowed to do it. Some of them actually work more in roles for able-bodied characters, because that’s all that’s out there. Some of them might actually enjoy being able to portray disabled characters, were they given a chance.
I want to see people like me when I look at the television. It’s why I watch, to escape into a magical world that I think I might be able to inhabit. And it’s easier for me, as a viewer, to place myself in that world when I see people like me. I think a lot of people feel like this. There’s a distance involved when you can’t connect with any of the characters, experientally.
And when the only people who are like me are introduced as tokens, figures for mockery or abuse, it makes me feel uncomfortable. It makes me not want to watch, because if I want to be tokenized, all I have to do is walk out the door.]]>
I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.
For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.
I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.
It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…
Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.
It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.
On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.
I’ve been in a lot of pain.
I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.
(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)
So, at work today.
I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.
My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.
I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.
The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.
And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)
OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…
And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.
I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.
I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.
They were talking about me.
They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.
But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?
They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.
The difference is, Dr. House is a character.
And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.
I am that woman.
I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?
I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.
Maybe she’s abusing. Maybe she’s handing it out on the street corner.
Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.]]>