Category Archives: bodies

Tell The Discovery Network that their transphobia is unacceptable

Late last week, PinkyIsTheBrain on tumblr began a campaign to bring attention to the new Investigation Discovery show “Who the Bleep Did I Marry?”, which equates someone being trans* with being a serial killer, a con artist, or a bank robber.

[Note: If you’re unfamiliar with Tumblr, it can be a bit hard to navigate. “Conversations” or comments or follow-up tend to be nested.]

Transcript:

Music plays in background: “Love and marriage, love and marriage”

The video opens on a scene of a wedding in an idyllic location surrounded by trees with an arbor of flowers. The camera zooms in on the bride, who turns and says:

(Marriage officiant in the background): Join this man and this woman in holy matrimony.

First Bride: Five years from now, I’ll find out that he’s a bank robber.

The camera cuts to a different couple, walking under a portico with their backs to the camera. The bride turns to the camera and says “Serial murderer.”

A zoom in on another couple, standing like they are being photographed with their families.
Third Bride (loud whisper): Russian spy!

Another couple, cutting a cake.
Fourth Bride: Cheater. With three other wives.

Another couple, surrounded by a crowd, the bride sitting on a chair while her husband kneels to pull off her garter.
Fifth Bride: And he’s a… a she.

(Gasps)

(Kissing noise.)

We cut back to the original couple, kissing at the altar.

The closing shot is of a fancy black car driving away, trailing ribbons, tin cans, and toilet paper. ‘Who the (bleep) did I marry’ is chalked on the back window.

Marriage Officiant (sounding disgusted): Who the bleed did you marry?

Voiceover: Who the bleep did I marry? All new [episodes?], only on Investigation Discovery.

This is not just a ridiculous comparison, it’s a pretty damned offensive one that equates being trans* with being a serial killer – and once again equates being trans* with lying, which is the same argument that murderers make with they murder trans* people.

FuckYeahFTM looked up the contact information for the Discovery Network, encouraging people to get in touch and point out how bloody offensive and shitty this is:

Here’s more info about the show:

Who The Bleep? [Opens with sound & Video]

The other episodes they have include: Married to An Embezzler, The Biggest Con, Married to a Spy, Married to A Bank Robber

And they are including marrying a transman, or in their words “He is actually a She” on that level, with criminals and murderers.

Discovery doesn’t actually make it easy to contact them with concerns (I had to use a search engine to find the Contact page because it wasn’t anywhere on the Who The Bleep? page), so here’s how I did it:

32. How can I contact you with programming comments or questions?
We welcome your e-mail comments and questions, which you can send to us by clicking here.

This is the most efficient way to contact us. Comments or questions directed to anyone else at Discovery Communications will be forwarded to Viewer Relations, which means it will take us longer to follow up.

You can also write to us at:

Discovery Communications
Viewer Relations
One Discovery Place
5th Floor
Silver Spring, MD 20910

There is actually a lot of “required information” before Discovery will let you contact them. They want your age, your name, what network you’re writing about (Investigation Discovery in this case), post code, Cable provider, program time, and “information needed” (along with several other pieces of non-required information) before you can fill in your comment. I believe it’s five steps before you can tell them what your concern is, the site is very slow (at least for me), and I have no idea how accessible it is. (It does not like my computer at all)

However, reaching out and making it clear to Discovery that this stuff is not okay, that being trans* is not a crime, is not lying, and is not the equivalent of being a “Russian Spy” or a “Bank Robber”, is important, and I hope as many of you as possible will contact them and make that clear.

This is what I wrote, if you are looking for a template:

Hello Discovery Network,

I am disgusted and appalled at your decision to equate being a trans man with being a criminal, a spy, or a murderer. A trans man is not “really a she”. He is a man who married a woman. The decision of your network to “out” someone like this is especially dangerous, as many trans people are murdered for allegedly “faking” or “lying” or otherwise “cheating” their sexual partners.

I hope you will reconsider your decision to air such an exploitive, dangerous, and abusive program.

Again, here is Discovery’s Contact Form. I emailed them last week and have so far received only a form letter, but if we overwhelm them with numbers, surely they have to pay attention, right?

Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

Conversations About Body Image: A Place at the Table for Me?

Conversations about body image come up often in feminist communities, and unfortunately, many of those conversations are predicated on the dual ideas that all people should love their bodies and that lovable bodies are healthy ones. This can be seen in the language used by campaigns designed to get people thinking about body image; I can’t tell you how many ‘positive affirmations’ I have encountered that say things like ‘love your body, because it is beautiful, healthy, and strong.’ I guess people who don’t have healthy or strong bodies can’t love them, or people who actively reject beauty can’t love their bodies either. And, of course, this reads like a mandate: You must love your body, because the idea of not loving your body is highly alien, as is the idea of feeling neutral about or disassociated from your body.

For people who may dislike their bodies, for any number of reasons, these conversations end up being exclusionary, as they are often treated as ‘unenlightened’ for not loving their bodies and they are lectured in an attempt to get them to submit. For people with disabilities, an added layer of complexity is introduced, as it is assumed we do not or could not love our bodies because of our disabilities. Similar complexity can arise for some members of the trans community, who may experience inner conflict with our bodies but feel uncomfortable expressing it, for a variety of reasons ranging from fear of being perceived as spokespeople for the trans community when we are just talking about ourselves, to fear that discussing dislike/hatred for one’s body is not acceptable. Especially when encountering campaigns mandating that people love their ‘natural’  or ‘inner’ beauty, I am left with more questions than answers.

I was reminded of this by ‘Black Torso,’ the piece I featured in my post on sculpture last week. What, for example, is a breast cancer survivor who chooses to get reconstructive surgery supposed to do? The rebuilt breast is not ‘natural,’ so does that mean the patient does not love ou body? What about the breast cancer survivor who cannot afford reconstructive surgery or is not a candidate for it? Maybe ou hates the scar and is uncomfortable looking in the mirror, but feels unwelcome in body image discussions rooted in the idea that ‘love’ is mandatory for all people when engaging with their bodies.

I’d like to start deconstructing conversations about body image to make a seat at the table for people who might feel relegated to the fringes of those conversations right now, and there are a couple of angles that need to be considered with more care in conversations about body image and in campaigns designed to spark conversations about body image.

The first is the idea that everyone must love their bodies. Not all people love their bodies and they should not be required or pressured to; indeed, we should be actively creating a space for people who aren’t comfortable with the bodies they are in that doesn’t consist of ‘we will educate you into loving your body.’ We should talk, too, about the reasons why people may experience conflict with their bodies, and how social attitudes, life experiences, and other things may play a role in the relationship people have with their bodies, without singling out people or shaming them for not loving their bodies, or not loving them all the time.

The second is the idea of ‘healthy, strong, natural’ bodies being celebrated in these campaigns and focused on in language about body image. The fact is that not all bodies are healthy, strong, or natural. Health is something that changes over time from person to person, and while some people may always have healthy bodies, others do not. ‘Natural’ is also not necessarily something everyone possesses, and I dislike the idea that a body needs to be ‘natural’ (who is defining this, incidentally?) in order to be celebrated.

Finally, we have these really complicated intersections between body image and disability, compounded by a lot of social attitudes about disability. Disability is scary, so disabled bodies are scary, and I notice that many body image conversations leave out people with disabilities, because no one knows what to do with us. Looking through many of the responses to the American Able art project, I was struck by the fact that many people were uncomfortable with viewing a disabled body, especially in the context of desirability. If our bodies are so frightening that people can’t see them on television and in ad campaigns, it shouldn’t surprise me that people have trouble fitting us in to discussions about body image.

There doesn’t seem to be a lot of room, in body image conversations, for people who may feel conflicted about their bodies, for people who reject a lot of the ‘affirmations’ promoted, for people who may not fit into the categories some participants in these conversations assume apply to everyone. Are there exceptions to these rules? Conversations where people are thinking about issues like disability and the rejection of beauty? Yes, there absolutely are, but they are exceptions, not the norm, and that is a trend I would like to reverse.

This is what we talk about when we talk about working towards the neutral place; creating a space where bodies and identities are neutral, so there is room for everyone, room for all relationships between people and their bodies, room for people at all levels of exploring their identities and their bodies.

Reactions, part 1

[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]

I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.

Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.

The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.

My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.

When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.”  The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.

Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.

The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.

And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.

For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).

Body Image & Disability: An Entry Into The Conversation

A long time ago, I said this:

People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.

Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.

But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.

These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.1

At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.

I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.

As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!

I think there’s so much here to talk about. Please, tell me your thoughts.

  1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.

Recommended Reading for September 7, 2010

Lisa Harney at Questioning Transphobia: QT and Posting and My Inability to be Consistent

Oh, and a lot of neurotypicals learn about ADHD symptoms, and they think “I lose my keys sometimes? I lose my train of thought! I miss deadlines!” And you know, it’s true. Everyone does these things occasionally. But the difference is that you do not do them every. single. day. This isn’t what your life is like, this is when you have a bad moment – you’re tired, overwhelmed, in a hurry, and bam, a thing happens. This is what life is like every day for ADHDers, and when we’re tired, overwhelmed, in a hurry, then it’s that much worse for us. So, I can understand if you relate to these symptoms? I’m sure most people do. But don’t generalize how you experience them (as not-symptoms, assuming you do not have some other condition that causes similar symptoms – or you’re not an undiagnosed ADHDer yourself) to how I experience them (as symptoms). For me, they are a daily impairment.

K__ at Feminists With FSD: Book review — The Camera My Mother Gave Me [trigger warning for sexual assault]

The negative reviews usually contain some variation of gross-out due to TMI or frustration with Kaysen’s lack of progress in treating her pain medically. It’s TMI and gross because vaginas and vulvas are generally considered vulgar and gross – at least outside of feminist circles – sometimes even within feminist circles, because don’t talk about vaginas too much or else you reduce yourself to a big walking vagina – and thus it’s a shock to read such frank language and descriptions about the vagina.

Tammy Worth for the Los Angeles Times: Mental health parity act may affect your medical benefits

Other provisions of the bill require out-of-network coverage for mental health services, parity of coverage of medical and mental health medications, and if someone is denied coverage of a mental health service that is deemed medically unnecessary by the insurer, patients have the right to find out why.

Andrew Palma for the Golden Gate [X]press (San Francisco State University student newspaper): University loses scholar, activist

Longmore is arguably most well known for his 1988 protest outside the Social Security Administration’s Los Angeles office. He burned his book about George Washington, written word by word with a pen in his mouth and a keyboard, to protest policies that penalized disabled writers for counting royalties from their work as earned income.

Adrian Morrow for the Globe and Mail: Efforts to battle chronic pain found lacking

Some 80 per cent of people around the world who suffer from chronic pain can’t get the treatment they need and governments must step up their efforts to tackle the issue, says Michael Cousins, an Australian anesthetist and the driving force behind the first International Pain Summit [. . .] Earlier this year, he had a hand in drafting a national pain management strategy for Australia – the first in the world – and the summit, which takes place in Montreal on Friday, will draw up guidelines to help other countries follow suit.

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Dear Imprudence: I Think You Missed One

Carolyn Hax recently got a letter from a pair of concerned grandparents asking about their granddaughter’s sartorial choices:

Dear Carolyn:

My husband and I are concerned about our 15-year-old granddaughter. She is not the slightest bit interested in makeup or the stylish clothes most teens like. She prefers basketball shorts and a T-shirt over her bra, then one or two more logo T-shirts or a football jersey over that. We are also concerned that she acts more like a 10-year-old, watching “SpongeBob,” playing with Legos at the Lego store, wanting to eat from the Teletubbies plate I have for a 2-year-old!

The parents seem oblivious. Her mom has made comments that she can’t get her to pick out cute clothes, but still, they are the ones who buy her the boy clothes. They even bought her men’s moccasins recently. Our 6-year-old grandson commented that she had on shoes like his dad. What do you make of this?

—Concerned Grandparents

She responds:

A 15-year-old! Watching “SpongeBob”! I’d contact the authorities, but they’re all watching “Family Guy.”

The most benign interpretation of your facts says your granddaughter has boyish tastes — and you need a stern lesson in not judging people.

The most alarming (or maybe alarmist?) interpretation is that your granddaughter is resisting maturity, her sexual maturity in particular, possibly in response to trauma — and that you need a stern lesson in recognizing pain instead of tripping over the football jersey chosen to conceal it.

If it’s the latter, that’s a matter for professional guidance.

But both extremes (and everything in between) have the same implications for you: This girl needs grandparents who love, accept and embrace her for who she is vs. worry she’s some kind of freak.

She doesn’t wear pink. Get over it, please, and position yourself to be her advocate no matter what her T-shirts say. Whether she’s a healthy kid with upstream tastes or she’s an unhappy kid screaming for help is something she’ll eventually reveal to the people she trusts. Your responses to her choices will go a long way toward determining whether you’re part of that group or not.

Her response seems pretty solid to me. She stresses that the granddaughter’s preferred mode of dress isn’t really the business of her grandparents and that she could probably benefit from more support and less critical commentary. But Hax missed something. Clothing is very much a part of gender performance and exploration and it seems entirely possible to me that their granddaughter may simply be transgender, or exploring butch and other masculine relationships to gender. For me, playing with clothing was one of the first ways I started exploring my gender identity, because clothing is so gendered. Luckily, I had a supportive father who didn’t fuss about what I did, or didn’t, wear.

Lots of teen girls aren’t interested in makeup or ‘stylish clothes’ for any number of reasons, and a lack of interest in these things doesn’t suggest anything, at all, about a teen’s gender identity, relationship with gender, or sexual orientation, but it is something that crept into my mind while reading this letter. If, and that is a big if, since I don’t know this girl, if she is transgender, that last paragraph becomes especially critical. It’s possible that her immediate family is already supporting her, but no one wants to talk to the grandparents about it because they are so judgy, and as a result, no one really knows what to say to them when they decide to start policing what their granddaughter wears.

As awareness about transgender issues increases, more and more transgender people are being recognised at young ages, which means that there are families all over the place navigating situations like this one. And a lot of those families, I know from personal interactions with transgender teens, really don’t know what to do with judgy family members who don’t understand the situation. The family is more focused on helping the teen explore gender than on making other members of the family feel comfortable, which is entirely appropriate, and that means dodging awkward questions and deflecting conversations that some people aren’t ready to have.

Hax underscored the important thing: No matter what is or isn’t going on with the granddaughter, she needs accepting, loving, caring grandparents, and nothing less. And she needs parents who don’t try to pressure her into buying cute clothes, but who buy her the clothes she feels comfortable in, whatever those might be. She needs a family that supports her and allows her to develop into her own person, whoever that may be.

By the way, I still play with Legos. And I know lots of adults who enjoy Spongebob.

Pap smears, fat-shaming, and the lithotomy trap

[X-posted at Hoyden About Town]

So I’m sitting watching the evening news, and on comes a chap telling us women and girls that we oughtta go and get more Pap smears. Then on comes a woman to talk about how Pap screening rates are going down in young women, and to speculate about possible causes for this. The cervical cancer vaccine comes up, as does the “awkwardness” of the test, and our inappropriate embarrassment, which we apparently need to get over.

What I don’t hear addressed in the mainstream media in these discussions of Pap screening? Well, lots of things, like heterosexism, and ignorance about Pap age/sexual experience guidelines, and sexual assault (inside and outside the medical system). However, the one that really stood out in my mind today is also a factor that isn’t going to be fixed by lecturing women. Fatphobic abuse in the medical system.

There has been a fair bit of talk around the feminist traps about some of the other factors, especially the aftermath of sexual assault and its effects on medical interactions. I’m not going to go into that in this post, but it’s a huge, huge issue. What I would like to talk about for a moment, not because it’s more important but just because I have a first-person anecdote, is medical fatphobia.

We know fatphobia kills. In all sorts of ways, in all sorts of settings. And one way in which it can kill is the horrendous tendency of doctors – quite a few doctors, from the stories I hear around the place – to trap women and girls on their backs so that they can shame them while they’re vulnerable. And what they don’t realise, or don’t care about, is just how long-lasting the effects of this can be – and not in a good way.

Medical education materials abound with motherhood statements about ‘Preventive Medicine’ and ‘Lifestyle Intervention’ and ‘Opportunistic Behavioural Education’. General practitioners are exhorted, over and over again, to take any and all opportunities they can to tell people they’re fat. Really, over and over. And OVER. And doctors, labouring under the mistaken impression that this will cause said people to magically become skinny and therefore ‘healthy’, go ahead and do it, then smugly boast about it between themselves, sighing about how no-one ever listens to them. Or, perhaps, under the impression that they can then self-satisfiedly sit back and tick a box on the chart about how they’ve engaged in initial Lifestyle Education, which they learned all about at the last Lap-Band seminar.

Medical education is a powerful, powerful matrix of fat hate, based on the twin premises that telling people they’re fat is (a) helpful and (b) harmless.

So let’s talk about how that plays out in practice:

When I was 19, I had a Pap smear. It was my first. I went to the nearest available doctor, who worked in a setting where they dealt with a late of people in late adolescence and early adulthood. I wasn’t particularly concerned about it; a very little vague unease at the unknown, but no particular trepidation. I didn’t bother taking anyone with me, and I just booked the appointment in between other things I had to do, like med school classes and whatnot. And off I went.

I got my Pill script, had my BP taken, then assumed the position. And the doctor came up into his position, as they do, then stopped.

He looked at my thigh. “Not quite the right spot,” I thought, “but hey, he probably knows what I’m doing more than I do.”

Then he touched my thigh. Around the middle, underneath (in lithotomy position).

Then he JIGGLED IT.

He jiggled my thigh.

And then he grimaced.

And then he did the Pap smear. I was frozen, completely unable (by my inexperience, position, and by general medical disempowerment) to say anything.

And then I fled.

Was I ‘traumatised’? I didn’t have nightmares. I went and got my next Pap smear dutifully, largely because I really didn’t have any choice – no Pap smear, no Pill script. (Ask me about contraceptive hostage-taking! You know you want to!)

But every time I get a Pap smear, every single time, even now more than twenty years later, I see his face. I see him jiggling my thigh with that look of disgust. Every time I lie down and spread my legs for the speculum, I am reminded of exactly how repugnant my body is.

My first impulse is to tell you exactly how fat I wasn’t, back then. To tell you that it wasn’t ok for him to do that because I was physically fit at the time. To tell you at length about how my aerobic capacity was at the 95th centile, that I could do a hundred pushups, that I could swim a k without stopping, that I was beating my fit male friends at squash, that I was getting State medals in my chosen sport. But that’s all irrelevant – because fat-shaming isn’t ok for people who are actually fat any more than it’s ok for people who aren’t. Fat-shaming doesn’t get a pass when it’s limited to people as fat as I am now, or twice as fat as me, or whatever. Fat-shaming isn’t bad because it’s directed at inbetweenies as well as at fat people. Fat-shaming is harmful for EVERYONE. Fat-shaming is not.ok.

As long as some doctors keep seeing lithotomy position as a prime opportunity to ladle on the shame, girls and women are going to avoid Pap smears. So hey, ball’s in your court, medical profession. Fix it. Get your own house in order, and meanwhile, stop telling US we’re the ones doing it wrong.

Today in Journalism: Woman Dances, World Reels In Shock

Last night, The Learning Channel in the United States aired a special on JoAnne Fluke, a dancer from Kansas. Since I’m writing about this on FWD/Forward, I think you can guess that JoAnne Fluke is a disabled woman. Fluke has caudal regression syndrome, a congenital condition of the lower spine. She was given a prognosis of less than three days at birth, and at 34, she’s winning wheelchair dance competitions. She’s a highly competitive dancer and she’s also interested in promoting wheelchair dance and raising awareness about the disabled dance community, two topics highly relevant to my interests.

She was profiled by a number of news outlets in the publicity ramp up to the TV special, and it’s really…interesting to see how journalists choose to depict her. The TLC special is called ‘Dancer With Tiny Legs,’ and thus it comes as no surprise to see titles like ‘The Tiny Dancer: Despite Small Webbed Legs, Woman Dances, Dreams.’ I see this kind of narrative a lot when it comes to talking about disabled dancers; there’s shock and surprise that, gee willickers, they can, like, dance and stuff! And set goals and work to achieve them! It’s so…wait for it, it’s in the first paragraph of the article…

…this amazing woman who suffers from a rare birth defect has gone against all odds and become a competitive ballroom dancer — and an inspiration to all those that she meets.

Inspiring! Of course, the illustration the article chooses to use is not an action shot of Fluke dancing. Instead, she’s posing on a floor with her dance partner, with the angle of the shot emphasising her partner’s long legs.

What’s fascinating about this particular profile is that it includes a sentence that’s actually quite neutral:

But while most people let their childhood dreams slip away…

I like that the article makes a point of simply saying ‘most people.’ Not ‘people with disabilities.’ ‘Most people.’ Because, the truth is, yeah, most people do let their childhood dreams slip away because they lose interest in them as they grow older, or for a variety of other reasons. Most articles about people with disabilities doing ‘inspiring’ things stress that their disabilities should have precluded their chances at ‘realising their dreams.’ This article points out that disability has nothing to do with whether you achieve your dreams or not.

Alas, it goes downhill from here. She has an ‘amazing story.’ ‘Despite’ her disabilities, she has ‘managed to create an able-bodied life for herself,’ because, as we all know, the nondisabled life is the thing that all of us aspire to, right? We all want to be normal. She puts on makeup! She drives her own truck! Wow, she really is just like a normal person! Who knew people with disabilities could drive, right? And put on makeup!

Fortunately, Ronnie Koenig at AOL Health stops writing at this point and lets Fluke answer some interview questions. The questions all read like a pretty common array of supercrip and good cripple stereotypes; how are you so strong? How come you never seem bitter about your disabilities?

Fluke’s responses are kind of a mixed bag, for me as a reader. I like that she points out that actually she’s not ‘super optimistic’ about her disabilities all the time; she talks about having a pressure sore, for example, and finding that frustrating. But she also reiterates a bit of some old narratives about disability. She talks about how she could have had it worse, and she gets her strength from G-d, etc.

But she also stresses that her disabilities have nothing to do with her being a dancer. It’s not despite or because of, as she puts it: ‘I’ve been a dancer since I was two years old. It has nothing to do with having disability or not having a disability.’ She also points out that achieving goals is about identifying those goals, getting to know yourself, and then working towards those goals, sound advice for anyone, of any ability status. And she points out that her goals don’t stop with dancing and promoting wheelchair dance, that she’s interested in becoming a Paralympic athlete.

However I feel about her responses, I do like that this profile gave her an opportunity to speak for herself, instead of filtering information about her through a lens. I got to learn about how she personally feels about her disabilities. So many profiles of people with disabilities I read feature interviews with family and friends, with everyone talking about the subject of the profile. In this piece, the usual narrative was reversed, and the subject talked about herself, which is the way it should be.

I’m not stoked about some of the language used about her in the intro, along with the rather patronising nickname that gets reiterated through the article, but I’m glad Koenig chose to profile her by allowing her to profile herself, for the most part. This is a step in the right direction, although I would have loved to see more neutral interview questions that didn’t set her up as a Supercrip from the very start.