Category Archives: invisibility

The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture

Last week s.e. smith and several other members of the disability community, including Alice Sheppard (a dancer with AXIS wheelchair dance company), TK Small (a lawyer and disability rights activist), Christine Bruno (who works with the advocacy group Alliance for Inclusion in the Arts), and Maysoon Zayidd (an actor and comedienne with Cerebral Palsy).

came together on the WBAI show The Largest Minority to discuss Glee and depictions of disability in popular culture. This particular episode of the radio show was inspired by s.e.’s post, A Very Glee Christmas.

You can download directly from their site: This is a direct download link to save-as. Alternately, you can play it on the WBAI site by going to their archives and scrolling down to Shared Timeslot Wednesday 10pm to 11pm on Wednesday, December 22, 2010 10:00 pm. Alternately, you can read the transcript.

The actual show itself doesn’t start until 3:52 in to the program slot.

It’s taken me a while to get the transcript of this done, for which I apologize. I did mean to get this up far faster than I did. I also should note that I had some difficulties always identifying who was speaking, and there are points in the program where the show’s audio cuts out terribly and I’m unsure what they’re saying.

Continue reading The Largest Minority Round Table Discussion: Glee and Disability in Pop Culture

Disability & Self Esteem: Advertising

I don’t have a t.v. at home so I don’t actually watch a lot of advertisements, but when I do, there’s one thing I notice: Unlike the rest of my life, advertisements only include people with evident disabilities when they want to make some sort of point.

I’m really bothered by this. I know, I know, it’s advertising. We also don’t get excited about brighter brights in our laundry and aren’t followed around by wind machines when we get new shampoo. It’s certainly not supposed to represent “real life” in any way, because it’s all fantasy to sell you stuff. But part of what advertising sells us is ideas about people. And part of what I think it sells us is that disability is a punishment, a novelty, a metaphor, or a joke.

As we’ve said before, disability never just is.

I think this does immeasurable damage to both our perceptions of ourselves as disabled people, but also people’s perceptions of disability and what it looks like.

Today I’ve pulled up a bunch of US-based advertisements (oh, wait, I added the Quebec advertisement after writing this paragraph – Canada & the US!) that feature people with disabilities. I’m curious about what people’s thoughts are when they watch these. What take-away messages about disability do you get?

Mothers Against Drunk Driving (MADD): Disability as punishment.

Description:

The video is a bit grainy, probably meant to invoke “home movie”. It opens with tinkly piano music of sadness and woe. A male singer croons: Together…..

The video opens showing a young man sitting on a bench, reading a book. He’s labelled “Your Best Friend”.

The Singer croons: We’re meant to be….

The young man looks up! There’s a woman! She’s walking up to him, obviously excited to see him. She’s labelled “Your girlfriend.”

They kiss!

The camera pans back to show this scene as viewed through a hospital window. The couple – your best friend and your girlfriend – walk off together hand in hand.

The singer croons: Together! Forever!

The camera continues to pan back to show the back of someone sitting in an electric wheelchair, staring out the window. The hospital room is obviously very bleak. This person is labelled “You”.

The screen goes black, and then: “You have a lot to lose. MADD: Mothers Against Drunk Driving.”

That’s right, folks: Don’t drink and drive because if you do you’ll become a scary scary cripple and your girlfriend will leave you for your best friend and you will die alone and unloved!

[Of course it’s a terrible idea to drink and drive. But I’ve seen hundreds of anti-drunk driving ads, and they really can send the same message without implying ‘Don’t drink & drive because cripples don’t get no love’. It can be done!]

Berlitz: Bait & Switch

Description:

Camera is doing a gradual close-up on a man in a wheelchair. Behind him is a park. The music is the tinkly piano of sadness.

Man: Up until two weeks ago I always said “It will never happen to me.” But today, look at me. Listen to me. Now I speak English fluently.

The screen goes black, and then “Berlitz. In just two weeks.”

I really waffled back and forth on this ad. On the one hand: Hey! It’s a person in a wheelchair and they’re not presenting him as a sad story. On the other hand, the whole point is to “trick” you into thinking he is telling his sad story but it turns out Surprise! He’s not. I feel this falls into the trope of “Disability to titillate”. What do you think?

Michael J Fox on Stem Cell Research (US political ad)

[Michal J Fox has visible tremors from Parkinson’s Disease.] As you might know, I care deeply about stem cell research. In Missouri, you can elect Claire McCaskill, who shares my hope for cures. Unfortunately Senator Jim Talent opposes expanding stem cell research. Senator Talent even wanted to criminalize the science that gives us a chance for hope. They say all politics is local but that’s not always the case. What you do in Missouri matters to millions of Americans. Americans like me.

“I’m Claire McCaskill, and I approve this message.”

Pepsi Superbowl Ad: Deaf people tell jokes, who knew?

The entire advertisement is in ASL:

Woman: This commerical was created and performed by EnAble – a network in PepsiCo which supports inclusion, diversity, and the inclusion of persons with different abilities.

Two men are driving slowly down a residential street, looking around and obviously trying to find which house they’re going to.

Passenger: Hey! We’re going to be late. We’re going to miss the kick off.

Driver: Which house is Bob’s?

Passenger: I thought you knew.
Driver: I thought you knew?
Passenger: No I thought you knew!
Driver: I thought you knew!
Passenger: No! I thought you knew!

Driver: Great!

He shrugs and starts honking the horn.
HONK HONK HONK

Lights in all the houses start to come on. A dog starts barking. People look out their windows annoyed.

One house stays dark.

Driver: That’s it!

Passenger: Yeah, ya think?

They go up to Bob’s house and push the doorbell. The lights flicker. Bob opens the door. Across the street he catches his neighbour’s eye.

Bob: Sorry.

Splash:
PepsiCo EnABLE
Creating an inclsive environemnt for people with different abilities.

Quebec Society for Disabled Children: Give children wings!

[An animated young boy walks onto the screen, looking sad.] It’s not always fun being a child.

[He sits down into a drawing of a wheelchair.] Especially when you’re disabled.

[A butterfly flies around him, and he begins to look happier.] Disabled children are just like any other children.

[The butterfly lands on his finger. He looks overjoyed.] When you open your hearts, you give them wings.

[The butterfly carries him up into the sky.] Please, help them spread their wings. Thank you for helping the Quebec Society for Disabled Children.

What are these advertisements saying about people with disabilities? What examples of people with disabilities have you seen outside of drug commercials? And what impact do you think these sorts of advertisements have on our perceptions of ourselves, and each other?

An open letter to abled people who like to glare at people who use disabled parking spaces

Also see: An open letter to abled people who use disabled parking spaces by Annaham, which this is jumping off from. Since I drafted this, s.e. also wrote Dear Imprudence: Who Appointed You the Parking Police?!

Dear abled people who like to glare at people who use disabled parking spaces,

Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.

However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.

I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.

Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.

Don’t be one of them.

Sincerely,

Chally

Politicians care so much they make their message nonsense

Like a lot of people, I signed up for automatic emails from the various political parties in Canada. Because I live in Nova Scotia, the main federal parties that run here are the Conservative Party, the Green Party, the Liberal Party, and the New Democratic Party (often just the NDP). (If I lived in Quebec, I would also have the option of voting for the Bloc Québécois federally.) I dutifully signed up for all four of these parties, so I could be informed about the issues they think are important.

One thing that seems to be very important: YouTube videos! Each of the parties maintains their own YouTube channel, and they stock these channels with videos. Every week or two, I get another email from a political party that really wants my vote (or at least my money), and they often include links to the YouTube channel, or even embedded video. And every week or two, I respond like clockwork, asking them to please provide captioning and/or transcription of the video.

So far, the response has been silence.

I wonder if the reason for this is simply because there’s the new Auto-Captioning service at YouTube, which attempts to automatically subtitle a video a video. Surely this will provide a good working set of subtitles, right?

Ha ha. Ha ha ha.

In alphabetical order, let me show you what the YouTube auto-captioning displays when I try to watch political messages from my current or potential political representatives:

The Conservative Party of Canada:

An image description appears below

Image: Screen capture of a YouTube video, with subtitles that read “You don’t think that’s a whole group called american this country and you have to decide”

Actual quote: Voice Over: “Adopted Britain as his home. Called America his country.” Ignatieff: “You have to decide….” (This advertisement is discussing Liberal Leader Michael Ignatieff’s past.)

Here is leader of the Green Party, Elizabeth May:

See below for image description

Image: Screen capture of a YouTube video, with subtitles that read “we’re on Friday evening breeze through across Canada will gather”

Actual Quote: Elizabeth May “…Where on Friday evening Greens from across Canada will gather.”

I will totally admit the Green example is not as terrible as the others. The Greens don’t have a lot of advertising at the moment. (Non-Canadians, this is in part because they’ve not got an actual member in the House. I count them as a national party because they run in all 308 Federal ridings, and May participated in the Federal Leadership Debate.)

The Liberal Party of Canada:

Description appears below the image

Image: A screen cap from a YouTube vid. Caption reads “the prime minister’s their lives for stroger’s we have a garden”.

Actual quote: “… The Prime Minister is there to inspire us to do our best, and we have a guy who….”

The New Democrats:

Image description is below.

Image: A YouTube screen capture. The caption reads “costs are skyrocketing so why does is Stephen harper dead”

Actual Quote: “Heating costs are skyrocketing. So why doesn’t Stephen Harper get it?”

This is what I wrote in one of my last emails to my MP about this issue:

I know disability and accessibility are things you care about too, Megan, so I hope that you will pass along my concerns to the NDP Leadership: Transcribing and subtitling/captioning of video and audio content is an accessibility issue. Providing both a transcript and subtitling allows for more Canadians to be able to access the message of the NDP. As well, it shows a commitment to accessibility and to including Canadians who prefer or require transcripts and subtitling, for whatever reason. As this is something I believe the NDP values, it would be helpful for the party, at all levels, to provide transcription and subtitling for all the videos that they produce.

Of course, subtitling your video (and providing a transcript) are not only for people who are d/Deaf or hard-of-hearing. They’re also for people who have audio processing disorders, who have difficulties understanding spoke English, who don’t want to turn up their volume, or even don’t have speakers or headphones on their computer. They’re for people who just want a transcript or subtitling because it makes their lives easier today. (For example, I have an ear infection and subtitles are the order of the day.)

Every political party in Canada “cares” about “the disabled”. They really do. Each one has a little subsection of their website dedicated to explaining how they “care” about “the disabled”.

I think it would be awesome instead of telling me how much they cared, they’d show it. And one way of doing that would be subtitling their ads, so everyone can know what their message is.

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Guest Post from Lisa: Invisible Ableism

Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.

So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.

When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.

In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.

This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.

So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.

This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.

Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?

Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.

And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.

Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.

I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.

Interested in submitting a guest post to FWD? Read our call for guest posts here for more information!

ADAPT Protests partially lock-down White House! Media Yawns, Changes Subject

I spent most of my weekend pretty much glued to Twitter following ADAPT’s latest action in Washington, DC and wondering where the media was, especially after a huge group of wheelchair users blockaded one of the White House gates and 16 people were arrested. I actually thought that the White House security arresting a group of people with disabilities would surely be the sort of thing that the media would pick up on.

Foolish me! Just like with the Arnieville protests that s.e. wrote about last week, the media is basically ignoring this four-day-long protest in Washington in favour of more important things. Despite repeated hunts by me and several other people, the only mention of the protest, “partial White House lockdown”, arrests, and march is this CNN report, which only quotes White House staff and the ADAPT webpage. Apparently CNN couldn’t even find someone from ADAPT to quote directly. (Also, the photos of the event that ADAPT have posted make it clear that CNN’s report is factually inaccurate.)

[If you would like to read NationalADAPT’s tweets, a good place to start is their September 18th tweet, and just keep going from there. Their timeline includes a variety of photos taken of the event, and also will point you towards other tweeters that were there.]

ADAPT has been protesting at the White House at least once a year (sometimes twice a year) since 1997, and has been holding protests in other cities across the US for 25 years. The focus of their protests for the last 11 years has been the Olmstead Decision and the Community Choice Act.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.

On Sunday, ADAPT held a funeral, complete with casket, to both mourn and bring attention to the number of people with disabilities who have died in nursing homes around the country while fighting to get out of them. Monday involved marching directly on the White House. While CNN reports that 9 people handcuffed themselves to the White House gates, the ADAPT photos and Reports make it clear that far more than 9 people were involved in this action.

The Park Police had closed the sidewalk and street in front of the White House around 10 in the morning as ADAPT approached. When the police used an SUV to block ADAPT and the sidewalk, the bulk of ADAPT charged into the intersection of 15th and G Streets stopping traffic completely. The police had believed they had successfully stopped the line of activists when suddenly all the traffic was stopped and the intersection was packed with activists.

“The people they thought were meek or expendable,” said Jennifer McPhail about the police force, “were the people who had taken their power.”

While ADAPT’s actions continue today across Washington, DC, members who are required to attend court this morning after being arrested have been illegally challenged at the court to produce documentation for their service animals, and need to bring attention to ADA violations to the very people one would expect to be enforcing the ADA.

When a local Washington paper was challenged on their decision not to report anything about the ADAPT protests, their response was first that they don’t cover national protests and then, when it was pointed out this was also a local protest, that it was a matter of debate, and there were protests every day in DC. Other media sources haven’t responded to questions about their lack of coverage.

I do understand this, to a point. Certainly I’ve attended protests that have received very little media coverage, and most of that in either local papers or in grass roots news organizations. However, at what point do we start to seriously question why multi-day – or, in the case of Arnieville, multi-week – protests by people with disabilities are getting ignored? The ADAPT actions have decades of history, and touch on issues that are hot-button topics in the US right now, such as health care, funding for social programs, and the standard of living.

And yet, still, despite everything: we protest, and are ignored.

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).

World Suicide Prevention Day

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A golden butterfly in a circle, with "Support Suicide Prevention Awareness"
Today, September 10th, is World Suicide Prevention Day.

Being suicidal, especially if you have long-term thoughts about suicide and suicide ideation, can be a very isolating and lonely experience. Do you tell your friends and family? If you do, how will they react? What about your job? Will you be forcedly committed into psychiatric care? Will people assume that if you haven’t actually harmed yourself, you’re not really suicidal and just faking it for “attention”? If you’re happy and having a good time today, does that mean you’re not really suicidal at all? What exactly do you say, and who do you say it to?

These are the things I wish I could tell you:

Be as kind to yourself as you can. If you are having long-term suicidal thoughts, you are ill. You are not weak, you are not failing, you are not letting anyone down. You are sick, and just like if you had a bad cold, or some sort of infections, you need to take care of yourself, and let your body and your mind recover.

There is not a quick fix. Talking to a friend, or a professional, or a help line, taking medication, spending some time in short or long term care, these are all helpful but take take time, something you can take as much of as you need. I wish I could promise you that talking to someone would force your mind and your body to heal, but it won’t. This is not because you’re a failure, but because you are ill, and again, you need to give yourself time, because you are not a failure, and you are not letting anyone down.

You do not have to be perfect. Just like someone with a cold or an infection may skip their cold medication or their antibiotics, and as a result may get sicker or set back their recovery, you too can end up screwing something up. This does not make you a failure, and you have not let anyone down. You are still worthy of getting the help you need, and you can still reach out to people who want to help you. Again, there is no quick fix, and you are allowed to make mistakes.

I cannot promise you that everyone around you will be accepting. It is not unusual in my travels through the internet to find people writing about how people who attempt or commit suicide are “selfish” or “bad”. These people are wrong. You are ill, and that is not the same thing at all. But there are people who are trained to help you, and are willing to help you in the road to recovery, no matter how hard or how long it is. Some of these people will be strangers, and some of them will be friends or loved ones. I know it’s socially isolating and scary, but please try and reach out, because they want to help you. Here is a small list of resources that may be helpful to you.

Your pain, and how you feel, it is all real. You are allowed to feel these things. You are allowed to be who you are. None of this makes you bad, or undeserving, or unlovable.

I hope you find what you need.