Category Archives: normality

“Saying conjoined twins are disabled is insulting!”: Evelyn Evelyn, redux

[Cross-posted to Hoyden About Town]

Something that has really struck me about the conversations around Evelyn Evelyn is the reaction that “Conjoined twins don’t have a disability! To say they do is insulting!”

Not all commenters make the link between the two statements – some stop at the first – so I’ll take these two separately.

A little background: Evelyn Evelyn is Amanda Palmer and Jason Webley’s new ‘art project’, presented as fact but understood as fiction, in which they “discover” poor struggling musically-gifted conjoined twin orphan women, save them from their child porn and circus-exploitation past, and help them – in a long drawn-out process, due to the women’s traumatic fallout and difficulty relating – produce their first record. Palmer and Webley dress up as the twins to perform on stage, co-operating to play accordion, ukelele, and sing. They can barely restrain their sniggers while they interview about this oh-so-hilarious and edgy topic. More in the Further Reading.

“Conjoined twins don’t have a disability!”

So, a note on normalcy. The idea that some people would shout in defence “But conjoined twins don’t have a disability!” took me by surprise. I wonder how these people are defining “disability” in their heads, if they’ve ever thought about the subject – do they picture a hunched figure, withdrawn, unable to work, self-care or socialise? Do they picture someone undergoing huge medical procedures, someone with prostheses or other visible aids? What is the image in their heads?

Because disability can be all of these things, and none of these things. Disability isn’t a checklist, or a fixed point. Disability – and normalcy – are socially constructed. Disability is the interaction between a characteristic or a group of characteristics often called “impairments”, and a world that recognises people with these characteristics as abnormal.

Disability is considered a tragedy, a fate to be avoided at all costs. Disabled people are those that society defines as “abnormal”. Disabled bodies are the ones that don’t fit in typical boxes. Disabled people are people that the physical and social environment doesn’t accommodate. Disabled people are considered defective, deformed, faulty, frightening, feeble, freakish, dangerous, fascinating. Disabled people are stigmatised, laughed at, looked down upon, marginalised, Othered. Disabled people are medicalised. Disabled people are defined in terms of how currently-nondisabled people view them.

Disabled bodies are those that are subject to the able-bodied stare.

It is obvious with the most cursory of glances that in our society, conjoined twins are disabled. Society does not accommodate them. They are medicalised from fetushood. They are spectacle. Their operations are videoed and broadcast across the world. They are displayed, tested, stared at, discussed, and mocked, purely because of the shape and layout of their bodies. They are the subject of comedy fiction and “inspiring” tragedy nonfiction.

How can people simultaneously look at this project as funny and edgy and worth paying money to stare at, while considering conjoined twins to be “not disabled”? Why are their bodies so hilarious, then? Why is it so funny when Palmer and Webley cripdrag-up in that modified dress? Why do they snigger and smirk as they talk about “the twins” and their tragic tale? They do this – you do this – because you do see these bodies as Other. Fascinating, bizarre, freakish. Fodder.

People with disabilities resist these definitions, resist being marginalised, Othered, stared at, compulsorily medicalised. (Just as we try to resist, where possible, being beaten, abused, raped, exploited, exhibited, forcibly sterilised.) We laugh at ourselves plenty. We reclaim terms like “crip” and “gimp” and “crazy”. This does not grant able-bodied people free rein to mock us, to play schoolyard imitative games, to use child porn survivors as a little bit of “colour” for their projects.

There is a lot more to be said on the social construction of normalcy. I strongly recommend Lennard Davis’ Enforcing Normalcy . For more reading, check out this booklist at Hoyden About Town, our booklist here at Disabled Feminists, and our blogroll.

“To say that conjoined twins have a disability is insulting!”

This one’s quicker and easier to debunk. No, it’s not insulting. It’s as simple as that. It’s not an insult because being disabled is not an inferior state. Saying that someone is disabled is no more insulting than saying “Lauredhel’s a woman” or “Barack Obama is black”.

Being disabled just is.

~~~

Further reading on the Evelyn Evelyn conversation:

Annaham’s post here at FWD, Evelyn Evelyn: Ableism Ableism?

Amanda Palmer’s blog: The Whole Story Behind “Evelyn Evelyn” [WARNING: invented story about child sexual abuse and exploitation; the other links discuss this also]

Amanda Palmer’s blog: Evelyn Evelyn Drama Drama

Jason Webley: Blog #1 – Evelyn

Amanda Palmer’s twitter, in which she remarks “setting aside 846 emails and removing the disabled feminists from her mental periphery, @amandapalmer sat down to plan her next record.”, and follows up “pain is inevitable. suffering is optional.”

SPIN magazine: Meet Amanda Palmer Proteges Evelyn Evelyn

Sady at Tiger Beatdown: AMANDA PALMER WANTS TO SHOCK YOU. Just Don’t Get Upset About It, ‘Kay?

TVTropes: Rape Is The New Dead Parents

The linkspam roundups: First, Second, Third (and possibly more as time goes on)

Evelyn Evelyn: Ableism Ableism?

Let’s get something out of the way: I say this out of love and respect. I say this as a fellow artist (albeit an unknown one). I also very much doubt that the people involved in this project have created it with any bad intentions. That said, however, intentions don’t equal a free pass for an end result, particularly if the end result is problematic.

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?

And then:

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.

Dear Imprudence: Oh No, It’s the Pronunciation Police!

The following appeared in Slate’s “Dear Prudence” advice column chat-room supplement fairly recently:

Chicago: We have a close friend who is prone to embarrassing malapropisms that surpass even the best Norm Crosby bit. These are not innocent and simple mispronunciations—but ugly mangling of words including misuse and lack of understanding of the meaning of some words. I know that many words have multiple pronunciations and meanings, but this is beyond brutal. Some of them are funny, some are faux pas that make you wince and want to help. We used to try to help by repeating the word correctly in conversation after she had mangled it. No success. We have tried the direct approach—like a teacher—but this was rebuffed. We never did any of this in public but in private, away from others. And we picked our spots—only bringing up the worst cases. But she takes offense and continues mispronouncing words and inserting them in conversation where they don’t belong. Recently, my wife used the word adept, and now our friend mispronounces it and uses it like apt. It is like she has her own language. My wife has stopped trying to correct her. Her husband is no help and does the same thing on a smaller scale. I refuse to throw in the towel as I can’t understand why anyone would not want to expand their vocabulary—correctly. I would want to know if I was saying tenor for tenure and FOIL-AGE for any of the many accepted versions of foliage. We are 57 and of sound mind. She does not have a hearing problem.

There are so many problems here, I don’t even know where to begin. This “friend” is SO EMBARRASSING, nor does she take kindly to being corrected by her “well-meaning” pals who think her misuse of language is just terrible! Horrors!

One part that strikes me as uniquely troubling is this: “We are 57 and sound of mind.” Yes, because being 57 is supposed to automatically mean that one becomes not sound-of-mind? Soundness of mind, additionally, is one of those things where the meaning changes depending upon whom you talk to. Combined with the letter-writer’s utterly condescending attitude toward his “friend,” this sounds suspiciously like a trope that has been leveled for ages at PWDs, mostly by the temporarily abled who are so concerned about their welfare: If you’d just take my advice/listen to me/let me HELP you, you would get better. As has been proven time and time again, this is rarely true.

Now let’s look at the columnist’s response:

Emily Yoffe: Your friend probably has some sort of language processing disorder (there was speculation that the George Bush’s malapropisms, “I know you want to put food on your family,” etc., might have come from such a disorder), and all the schoolmarmish corrections in the world won’t “cure” her. It’s good you mention Norm Crosby, because he built an entire career on amusingly mangling language. I don’t know why you consider being with your friend “brutal.” It sounds as if you usually understand what she means, and when you don’t, you can ask for more context. Trying to keep a straight face seems like the biggest problem you face in socializing with her. So just be compassionate and let it go, and when you get in the car, you can laugh at her best neologisms.

Shockingly, I don’t totally hate this advice, despite Yoffe’s ill-fated attempts at snark/humor. She brings up an excellent point: If these “well-meaning” grammar cops think that being around this person (whom they call a friend) is such a trial, then why would they continue to be around this individual? To bolster their own sense of superiority? To show off their class privilege to this “friend” in the most ridiculous way possible? I have some issues with the “just laugh at her when she’s not around” suggestion, which seems almost needlessly rude–laughing at someone’s disability, furthermore, (which they often cannot control) is generally considered impolite for a reason.

But what the hell do I know? I’m just a person with several disabilities; if I’m lucky, perhaps a well-meaning TAB is writing a hand-wringing, oh-so-concerned letter to an advice columnist about me right this very second.

Do you REALLY trust women?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.

Lines in the Sand: Daly, Showalter and Tactics of Exclusion

The second-wave radical feminist theologian and professor Mary Daly died earlier this month, and there has been a veritable outpouring of eulogies from various feminist blogs.

Few of these eulogies have acknowledged Daly’s transphobia and racism.

I do not deny that Daly was an important figure in second-wave feminism, but to mourn her passing without a nod to her work’s more problematic aspects, or explorations of these aspects, are, to put it mildly, not good. In particular, the intense, hateful transphobia found in some of her writing, and her issues with unexamined white privilege and racism — which both QueenEmily at Questioning Transphobia and Sungold at Kittywampus cover very well in recent posts — strikes many as both deeply disturbing and an old pattern that has, and continues to, rear its grotesque head in certain segments of contemporary feminism. I include myself among those who are deeply troubled by Daly’s transphobic sentiments and her questionable record when it came to examining the entrenched racism and issues surrounding white privilege in the second-wave feminist movement.

I should probably mention at this point that I do not mean to appropriate or co-opt the struggles of trans* folks in any way, although my cis privilege will most likely be unintentionally reflected at points in this piece. Though the struggles of trans* people, trans feminists and PWDs and disabled feminists are not the exact same, some exclusionary tactics of certain cisgendered feminists and those of abled feminists sometimes take similar forms, especially within the mainstream feminist movement. The oppression of trans* folks and PWDs in cis, abled culture intersect in a number of ways; this post, however, barely scratches that surface. I believe that the many issues present in Daly’s work–as well as the reaction to her death around the blogosphere–can serve as just one entry point to discussions of the similarities in oppression(s) that trans* people and PWDs face. There are also clear differences, among them the fact Daly used language that can only be called genocidal, while many other feminists of her generation did not advocate such an extreme path when it came to keeping certain individuals out of feminism. I will be focusing on feminism’s exclusion of trans* and PWDs as reflected in the work of two very influential second-wave feminists here, but there is, of course, much more to these stories.

Daly’s penchant for exclusion and outright hatred (particularly of trans* individuals) couched in oddly phrased academic rhetoric unfortunately brings to mind another famous second-waver’s similar issues with people (particularly women) with disabilities. Princeton scholar Elaine Showalter — best known for bringing feminist literary theory to the fore in the academy at a time when such a discipline was, for the most part, inconceivable — dismissed disabling conditions like Chronic Fatigue Syndrome, Gulf War Syndrome and mental health issues such as Dissociative Identity Disorder (referred to in the text as Multiple Personality Disorder) in her 1997 book Hystories.

In Hystories, Showalter attempted to debunk “modern media epidemics” such as the aforementioned disabilities as well as more traditionally disproven phenomena such as alien abduction and satanic ritual abuse. In the book’s chapter on Chronic Fatigue, Showalter rather disingenuously declared that she did not want to “disparage the suffering” of people with such conditions only a few pages before she called CFS an extension of Western “fin de siecle [end of the century] anxiety.” She followed this stunning assertion with the claim that the Western news media was primarily responsible for making CFS into an escalating “psychogenic epidemic” (117, 131).

Like Daly’s severe opinion of trans* people as dupes of the medical industry (which Kittywampus cites in her post), Showalter also seemed to be taken with the idea that people with CFS are somehow being duped into thinking that they are ill because of the media focus on their condition. She wrote that many CFS patients and their defenders are “hostile to psychiatric or social explanations” of the condition, and that many of them react in a way that is not friendly to the labeling of CFS as “psychiatric” (128). However, the reactions of these same patients make sense if considered from a non-abled perspective. Showalter also seemed completely mystified by these “hostile” reactions. If CFS is just a manifestation of “fin seicle anxiety,” as she contended (adding that “emotions have tremendous power over the body”) she seemed to push the conclusion — without any scientific or medical proof — that many people with CFS have somehow been brainwashed into believing they have it; thus, the media-driven “hysterical epidemic” has worked.

Nowhere are feminists with Chronic Fatigue Syndrome or related conditions consulted; the not-so-feminist implication here is that feminists with Chronic Fatigue Syndrome either do not exist or are just victims of a “hysterical” media-led epidemic and therefore cannot be “real” feminists. This is similar to how trans* feminists were erased, excluded and castigated by Daly as somehow not “real” women or feminists, and as benefiting from patriarchy in a way that “real” women and feminists could not. To put it crudely: This is exclusionary bullcrap, and it does not do trans* people, people with disabilities, feminists who fit either (or both) of these categories, or the feminist movement as a whole any favors whatsoever.

Exclusion is not radical. It has never been radical. It is, in fact, extraordinarily status-quo. No one should be able to arbitrarily pick and choose who “belongs” in the feminist movement and who does not, especially if those who are being excluded because of their gender identity, sexual identity or disability actively identify as feminist. Feminism should be for a wide variety of people; exclusion, however, is something that is not — and has never been — very  feminist.

Author’s note: I will be moderating this thread with an iron fist; please have the courtesy to not try to tell me how Daly really was an ally to trans* folks, or how Showalter didn’t mean what she said about CFS *that* way, or that either author’s influence on the feminist movement somehow excuses their hatred and bigotry. Thank you.

[Cross-posted to Ham.Blog]

Quoted: Karl Michalak, “Face Value” (excerpt)

Everything healed up
but in a very strange way
Years later
when it was very obvious
that something was very wrong with my face
everyone
said one or more of the following:

It’s the Lord’s will.
Just learn to live with it.
It’s all in your imagination.
Don’t be so self-centered.
Shut up and do your homework.
Other people are worse off than you.

[Full text available in the 2004 anthology Queer Crips: Disabled Gay Men and Their Stories, edited by Bob Guter and John R. Kilacky.]

Does Outright Speculation Make This Disabled Feminist Angry?

Answer: Yes.

Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:

There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.

Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:

The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.

OH MY GOD, EVERYBODY PANIC.

Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?

Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.

After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:

One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.

Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.

In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about  painkillers and (possible) ADDICTION!!11.

Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.

But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.

And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.

Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).

Injury versus disability

I have an injury – animal bites on my face, forearms and hands from a skirmish with a feral cat outside my office building. I’ve got quite a black eye with puncture wounds on my cheek, so my injuries are immediately visible. I’ve also got severe swelling in my left index finger so I can’t bend it or use it for anything, and bumping it against something sends extremely sharp pains through my hand that last for about half an hour.

I am having a fair amount of trouble with it. I can’t open jars or plastic packaging or use a can opener. I can’t hold the steering wheel very well with my left hand. I’m right handed so I can still use a pen and hold a fork and spoon, but my typing is totally jacked up – I can use the other fingers on my hand if I keep the injured finger extended, but that makes my hand go in an unfamiliar position and the rest of the muscles start cramping and aching if I do it for long, making me rely primarily on hunt n peck typing with my right hand. (I usually type over 120 words per minute, so this significantly slows me down.)

When people observe or hear about these functional impairments, they keep saying to me “oh well thank goodness this will heal. Imagine how it would be if you permanently lost the use of your finger!” and “well at least your face won’t be that wasy forever. Let’s hope it doesn’t scar.” They seem to regard these temporary injuries as a disability simulation of sorts and are reassuting me that I won’t continue to be this impaired or have this reduced functionality only because my injuries will heal.

I, on the other hand, feel that if these injuries were permanent disabilities, I’d have a lot easier time dealing with them. The problems I’m having are largely because it is a new situation for me and my habits and unconscious behaviours are all based on my assumption that my left index finger works fine. I haven’t had any time to develop the mental awareness or the physical abilities to compensate for the problems with that finger – if the other muscles in my left hand were more used to typing without that finger, I’m sure I’d be able to type more quickly and without as much pain in my left hand. Similarly, if my brain could remember that bumping left index finger leads to extreme pain, I wouldn’t have banged it against the car door every single time and I’d buy a purse with more organization capacity so I didn’t have to dig through it with both hands to find anything.

This isn’t to say that having this injury be permanent wouldn’t have long-term effects on my functional capacity. It just means that the functional effects of my temporary injury are in no way indicative of my functioning or my abilities were this a permanent disability. And that having this injury doesn’t teach me anything about what it would be like to have this disability.

The one aspect that has been eye opening for me is the demonstration of how entitled people feel to talk to you about visible injuries or disabilities. My finger isn’t that noticeable and I’m wearing long sleeves because of the weather, so only my facial injuries are visible – and boy are they visible. Even when wearing sunglasses to cover the worst of the bruised and swollen eye, the puncture wounds on my cheek are prominent. And in the day and a half since I was injured, I have been asked to explain “what’s up with my face” by virtually every stranger I’ve encountered. So much so that I’ve already started making up stories (my favorite: “I was being attacked by a vampire but I managed to deflect him so he bit my cheek instead of my neck.”). The feeling that my body is fodder for them to gawk at and demand explanations for is new to me, as my disabilities are usually not visible and I’m used to passing in public. While I don’t pretend this temporary experience in any way lets me know what it would be like to live as a person with a permanent visible disability, this is the only aspect of my injury experience that I feel is at all relevant to understanding the experience of disability.

The Brain Is Still A Giant Mystery

Optical illusions are one of those things that seem fun and frivolous but actually illustrate deep insights into how brains function. I recently saw an illustration of the “hollow mask illusion” over at the Wired Magazine Blog and it made my jaw drop. In the illusion, a person viewing a concave face (like the back side of a hollow mask) perceives it as a convex face, like the front side of the mask. This illusion is so strong that even when a person is aware of the illusion they are still unable to see the concave face because the brain perceives it as a convex face.

Check out this video and see if you perceive the concave face as concave or convex, or both:

Description of video: hollow Charlie Chaplin mask is attached to a rod, rotating slowly. As the mask rotates and the concave inner side of the mask comes into view, it seems to pop outwards, becoming convex.

I have watched this video upward of ten times, and no amount of anticipation, concentration, stern looks, putting hands on hips, or even cursing has allowed me to see the concave side of the mask as concave. Every single time, the visual information goes into my brain and some filter is applied to the raw information and POOF it’s convex again. It seems that this illusion works only for human faces, as “it doesn’t work well with other objects, or even with upside-down faces.” This suggests that there is a program in the brain trying really hard to find face-like patterns in visual information – this is why we see faces in clouds, or snow covered mailboxes or even grilled cheese sandwiches. We can also recognize faces when they are distorted or compressed or otherwise obscured:

The New York Times > Science > Image > Distorted or Blurry, the Face Shines ThroughThis is likely a developed ability to allow us to recognize faces quickly and unconsciously instead of having to consciously process the facial features and determine that it was a face. It was helpful to humans to be able to recognize faces of other humans, both to determine that they were human and to distinguish them from other humans.

The results of a recent study strengthen the suggestion that this is a process applied by the brain on received visual input. Two researches in London found that people with schizophrenia did not experience the illusion and reported seeing concave faces. When they used an fMRI scanner to measure brain activity on people with and without schizophrenia while viewing the rotating mask, there was a significant difference between the brain activity of people with and without schizophrenia:

[The researchers] analyzed the fMRI data using a relatively new technique called dynamic causal modeling, which allowed them to measure how different brain regions were interacting during the task. When [neurotypical] subjects looked at the concave faces, connections strengthened between the frontoparietal network, which is involved in top-down processing, and the visual areas of the brain that receive information from the eyes. In patients with schizophrenia, no such strengthening occurred.

Dima thinks when [neurotypical] subjects see the illusion, which is somewhat ambiguous, their brains strengthen this connection such that what they expect — a normal face — becomes more influential, overpowering the actual, though unlikely, visual information. [People with s]chizophrenia , meanwhile, may be unable to modulate this pathway, accepting the concave face as reality.

What I think is most interesting about all this is the clear illustration that the functioning of the brain is still largely a mystery to us. This illusion basically exploits a processing error that occurs in neurotypical brains and, incidentally, is used in a lot of the illusions at Disneyland’s Haunted Mansion ride. But there are so many other processing glitches that instead of being seen as an amusing and harmless byproduct of a neurotypical brain, are seen as problematic and annoying if they are credited at all. I work and concentrate better when I play music or I take a three minute break to play Bejeweled. Why? I have no idea. But I doubt that any supervisor asking me why I’m playing Bejeweled could explain to me why their brain perceives the concave mask as convex. Or could stop doing it if they just tried a little harder. Maybe if we had a better understanding of how brains worked it would be easier for people to understand and credit the reality of mental disabilities.

Note: clearly, this illusion is not a diagnostic test for schizophrenia and should not be treated as such.

I Hope You Feel Better

I hope you feel better.

They mean well. They always do. It’s what people say when they hear someone they know is in pain or ill or uncomfortable. I’ve learned that tears and “Why would you say that to me?” while an accurate reflection of how it makes me feel is pretty much guaranteed to lead to all sorts of unpleasantness I don’t want to have to deal with.

Whoa where did that come from I was just trying to be nice. What’s wrong with her? Can’t you just take it for what it’s meant?

I really can’t. For one thing my brain doesn’t process subtext quickly enough to have conversations at full neurotypical voice conversation speed — I’m doing the best I can keeping up with the text alone. But I don’t wear a sign that says “I am not good at auditory processing.” If I did I’d be explaining that all the time too. I don’t like talking that much.

(What’s that mean? It means I hear fine. I hear everything. ((When tinnitus isn’t in the way meh.)) What I have trouble with — and sometimes it’s harder than others — is pulling the thread of one person’s voice out of everything else that’s coming in through my ears and turning sound into meaning. If there’s a television in my visual field this task gets harder. This is why I take books to restaurants; I usually can’t make out what the person I’m eating with is saying anyway.)

Well. I can take it as it’s meant when it’s someone who doesn’t know me. When the person saying it doesn’t know that I have a disease that leaves me in pain all the time and exhausted all the time and makes it hard to walk and think and work and all the Weird Shit that goes along with it I can accept “I hope you feel better” because it doesn’t actually mean anything. It’s just politeness.

When the person who’s saying it has heard me or read me (often we’ve also had the conversation amndaw wrote about in her Who Hates to Hear They Look Great? post) it hurts. Lately I’ve been not eating much and throwing up a lot and it’s not a lot of fun. I mentioned that I didn’t feel good at my LiveJournal and every comment was a form of this. I even got one in imperative voice: “feel better soon.”

I have a chronic disease that isn’t curable and I have not heard of it going into remission. This is not temporary. Sometimes the symptoms are excruciating. Sometimes the symptoms aren’t so bad. They never go away. Even if I never feel any better than I do right now my life will still be worth living and I’ll still be happy and I’ll be okay because I work really hard at living my life and being as happy as I can in it. For me it includes accepting that I will not get better. It also includes some complaining about feeling rotten because accepting that I won’t get better doesn’t turn it into rainbow-flavored unicorn shit.

Demands that I feel better discount all that.

I want to tell people to please not say that to me. But I know how it’ll go. I’ll be the mean cripple yelling at people who were just trying to be nice. So I mostly don’t say it.

Bonus Section:
Since most essays from marginalized people on the topic of Insensitive Things Privileged Folks Have Said To Us will garner at least one comment along the lines of “Well if you’re going to tell people they shouldn’t say whatever how about you tell us what we should say.” At which I’m like thanks for the derailment attempt that’s so thoughtful! I am so delighted to do this work for you you have no idea. But I do actually have something here. An expression of sympathy that doesn’t include a request or demand that I do something impossible is always nice. I’m a really big fan of “That sucks. I’m sorry you don’t feel good.”