Tag Archives: things people say

Dear Imprudence: Thank You for (Proving) Your Service!

Slate Magazine’s Dear Prudie got one right this week, with a letter from a woman who’s husband is a U.S. military veteran, who recently lost his leg “due to a medical condition that was unrelated to his time in the military”. According to the letter writer, her husband has adjusted well to his recent amputation, however, it is the passers-by who seem to not be able to just let it go. She writes:

[O]ften strangers will pause to talk to him while we are in public, and these well-meaning individuals will ask whether he is a veteran. When my husband answers yes, it is inevitably assumed that he was injured in Iraq, and he is often thanked for his sacrifice for our country. One elderly gentleman hugged him with tears in his eyes! While my husband is a veteran and technically qualifies for the warm gesture, it seems deceitful to allow these people to believe he suffered a grave injury in Iraq. We don’t want to share my husband’s complicated medical history with strangers, but we don’t want to discourage people from giving thanks to vets in the future. What should we do?

Prudie’s response is pretty solid, in my opinion here. People with disabilities face nosy questions all the time. Everyone from children who can’t help but be unabashedly honest to grown-ups of the well-intentioned and otherwise variety. People with visible disabilities are constantly questioned about the whats, the hows and the whys of their conditions, as if they are under some obligation to share private pieces of their personal medical information. PWDs with invisible conditions are scrutinized by even their close friends when their health varies from day to day.

Veterans also face a barrage of these questions even when they are able-bodied, from people wanting to know about their service, where they’ve been, even if they have killed someone (hint: you should NEVER ask a veteran this question). Sometimes this line of questioning ends in tears and hugs and thank yous because people are grateful and some even want to share common experiences. Sometimes this creates tense situations. One place where I was stationed in California this actually resulted in people throwing their drinks on sailors and calling us “baby killers”, resulting in a lockdown on how and when we were allowed to leave the base or our houses.

The place where this intersects creates a wholly unique situation. Like Prudie says, people see a person of about the right age with a disability and presume that this person must be a combat-wounded veteran. Cue the questions and thank-yous, and demands for, once again, medical information that is none of their business. All based on presumption.

I agree with Prudie here. “Didn’t” and her husband are under no obligation to correct these people, no matter how well intentioned they may be in their demands for information or genuine their appreciation of his service. It is an invasion of his privacy, of their privacy, and it should be enough to appreciate the sacrifice that they made as a family (however much of that time was spent together) and he himself for his time spent in service, because it is a sacrifice of time and life. If these strangers want to assume that his loss of leg is related, then that is on them, but there is no litmus test of injury or illness that is required in order for your service to be appreciated.

Being patient and understanding that some of these people mean well is one thing, and it reflects well on Didn’t and her husband if they are willing to do so, and thank them for their gratitude. But when it goes beyond a thanks and violates their comfort levels they should feel no guilt over drawing a line and letting them know that they would rather not discuss it.

Fighting To Get Back And Other Cute Metaphors

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

A while back I wrote a little bit about Permanent Limited Duty, or PERMLIMDU as we called it in the Navy. It is the status you are placed in when you are injured or sick enough that you can no longer perform your job to military standards and the military has a board decide how much you can do, how long you can do it for, blah blibbity blah.

I also get a daily subscription to the Stars and Stripes newspaper because I like to read while I am on the toilet. It seems appropriate.

So it stands to reason that I would come across this article from Stars and Stripes (the online and the paper may vary a bit, I haven’t matched them up side by side, but there is usually a slight variation if I can find them in both mediums at all) about servicemembers who are “fighting to get back”. Actually, in the online version the headline uses a cute joke “but results may vary”. I tried hard to laugh. *ahem*

Now, let me be perfectly clear: I applaud the efforts of the military members who worked through their injuries and fought to return to their jobs. I hesitate to applaud this type of story, because these always, always, especially when covered by the military, feel “inspirational” to me, even though the veteran in me applauds the veteran who is them, irrespective of the intersection of race, gender or other marginalization, for getting back to any kind of duty status. Because the military is an animal that will eat the less than perfect alive and shit them out and bury them, forgetting they ever existed.

According to the article, “200 soldiers, 58 Marines, 33 sailors [I would have been 34] and six airmen have petitioned for, and won, the ability to continue to serve even though the military has found them unfit for duty”, which is nothing short of remarkable considering the way the military has about tearing people down. What is interesting is this article and the way it highlights some aspects of this marginalization, and glosses over others altogether.

Most interesting to me is that of all of those people, they could not find one woman to highlight? Hmm… funny that. I can’t imagine that not one of those many people who came back to PERMLIMDU status was a woman.

Most aggravating to me was the story of Spc. Jake Altman, whose story was almost presented as a he-said, he-said, except that they casually dismissed Altman’s feelings of being mistreated. He mentions being put on patrol in a damned war zone without his prosthesis, because his superior said that it looked like it was hard for him to see others doing it better than him. So, what? Was it Sgt. O’Brien’s job to teach Altman a lesson in hard knocks? Because something tells me that Altman had already skipped ahead a few courses in that one and could happily give O’Brien the Cliff’s notes explanation. Not that I think he would listen. Because a good number of TABs tend to not really try to get it when PWDs try to describe their experiences to them.

Altman contacted the Warrior Transition Unit, a wonderful thing the Army has going on, and has eventually sought discharge. I can empathize.

Because at the end of the day, no matter how much you want to stay in and do the job, what others think and how they treat you matters. It matters enough to drive you out. I think that if someone did a study or a survey or wev, they would find that people who transitioned out of the military due to illness or injury might possibly have depression due to a crushing loss of the camaraderie, but that is my lay opinion based on my own experiences.

The dismissive air of the article over Altman’s attempt at returning to deployment, and the following segment, subtitled “Up To The Challenge” as if Altman somehow had a moral failing, as if the treatment of those around him, who judged him outright and convicted him of being less-than due to his injury.

My job in PERMLIMDU would have been much different. I am not even exactly sure what it would have been, to be honest, because… well, in my mind I still gave up. Getting injured in the military, or ill, or anything that makes you less than a perfect TAB specimen, eats you alive. It starts to kill you from the inside, knowing that you are a failure, because you have been conditioned that anything less than the best is unacceptable. The glimmer of hope that is PERMLIMDU gives you back a sliver of that self worth.

Recommended Reading for May 18, 2010

Pharaoh Katt at Something More Than Sides: I Dreamed That I Was Normal

I dreamed the world made sense,
That people never tried
To delve into my psyche and redefine my mind.

Gauntlet at Tumblr: Janet Street-Porter shares her thoughts on depression…

I think maybe what we are seeing here, is women who have a powerful voice in the media through their personal fame or newspaper column, sharing their experience in a way that will hopefully help to normalise the experience of mental health problems and help reduce stigma.

telesilla: 3W4DW — Day ???

I don’t need to explain to anyone why I’m on government assistance, because you know what? It’s none of anyone’s damn business.

Brendan Borrell (Los Angeles Times): Pro/Con: Time to reexamine bipolar diagnosis in children?

In a draft of the next edition of the Diagnostic and Statistical Manual of Mental Disorders — the American Psychiatric Association’s bible — a new label, temper dysregulation disorder with dysphoria, is proposed for these behaviors instead. Unlike bipolar disorder, the new label doesn’t specify that the disorder is a lifelong condition.

Go educate yourself (please!)

Image description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.

[Image via Tlönista in this comment thread at Flip Flopping Joy. Description: A shocked-looking cat perches on a chair, staring straight at the camera. Text reads: “Concerned cat is just looking out for your best interests when she says that your tone might be alienating well-intentioned potential allies who just need a little polite education.”]

One unfortunately common response to marginalized people saying that there’s a problem is the “Educate me NOW” demand from “well-intentioned allies” who totally mean well, but they just lack education on these issues and so just can’t understand what the fuss is all about.

I am using the following example not to appropriate from the awesome anti-racist work that Jessica Yee and the fabulous Racialicious crew (and countless bloggers around the web!) do on a daily basis, but rather for two specific reasons: 1.) I have already talked about my personal relationship with this oft-used derailing tactic rather extensively, and could probably talk about it ’til I’m blue in the face; 2.) anti-racist activism and disability activism are not completely separate, independent social justice strains — many of us who are involved in these activist projects are, in fact, fighting similar (though NOT completely analogous) battles. For me, claiming an identity as a feminist disability activist has entailed doing my best to fight racism and white privilege alongside fighting for disability rights. This is because disability and race intersect in many, many ways — sort of like how disability and gender, and race and gender, intersect. In other words, this is not just a disability issue, or a feminist issue,  or a trans* issue, or an anti-racist issue; it affects many of us in the social justice blogosphere, if in differing ways.

The “educate me now because I want to learn, marginalized person!” response played out, yet again, fairly recently in the comments to a post on Bitch authored by Indigenous activist and writer Jessica Yee. [Full disclosure: Some of us here at FWD guest blogged for Bitch as the Transcontinental Disability Choir.] Jessica had written a post on white hipster/hippie appropriation of native dress and why it’s not only ridiculous, but racist. Makes sense, right? (If it doesn’t, you might be at the wrong blog. Or go read this. I don’t know.) Overall, this piece seems like it would fit right in on a website for a magazine that is dedicated to showcasing “feminist response[s] to pop culture.”

And then the comments started rolling in, and so did the “but you have a responsibility to educate people who mean well!” trope:

I’m sure this is in fact extremely annoying. However, you might consider that when people bring that up, they’re not saying, “Hey I’m just like you and I totally understand what you deal with,” they’re trying to make a connection and learn something. Ignorant people are a pain in the neck, but they’re mostly not trying to be ignorant on purpose.

I‘m merely suggesting that if this is a cause you deem worthy of championing, then you should have a prepared source of information for them—be it this blog, book titles, or documentaries. Encourage them to learn more about THEIR history and perhaps you’ll draw a new soldier to your army.

It seems somewhat contradictory to put stickers on your laptop that indicate a Mohawk heritage and then rudely dismiss a stranger who expresses an interest in your advertisement. Perhaps a better way to accomplish your agenda (whatever it is) would be to engage in polite and open-minded conversation with those who mistake your stickers for an invitation.

Thea Lim at Racialicious pretty much nailed it in her recent post on what went down, entitled “Some Basic Racist Ideas and some Rebuttals, & Why We Exist” (which I highly recommend that you read in full, by the way). An excerpt:

This kind of hey-let-me-help-you-achieve-your-goal-by-suggesting-you-be-more-radio-friendly response totally misunderstands (and appears disinterested) in the anti-racist project, because it assumes that anti-racism is all about convincing white people to be nice to people of colour.   In other words, it assumes that anti-racism revolves around white folks.  Like everything else in the world.

Anti-racism and people of colour organizing is not about being friendly, being appealing, or educating white folks. While individual anti-racist activists may take those tacks to achieve their goals, the point of anti-racism is to be for people of colour.

I completely agree with Thea here — and I believe something similar applies to disability activism. That is: Those of us with disabilities are not here to make abled people feel comfortable, to hold their hands as they have a Very Special Learning Experience (most often, it seems, at our expense), or to make them feel good about themselves. I, personally, don’t care how “good” your intentions are, or that you reallllllly wanna learn, or if you think I’m being mean by not dropping everything to educate you when you demand it.  While I definitely don’t want to speak for Jessica, Thea, or any of the Racialicious contributors — or for people of color who do anti-racist work — I suspect that they may feel similarly about white people who come into PoC, WoC or other anti-racist spaces and demand that whoever is doing the activist work must halt whatever discussion is going on and educate them, now, because they are good “liberal” white people and have such good intentions, and you PoC want white people like me as allies, right? And if you don’t drop everything and rush over to educate me, well, you’re just a big meanie who must not want my support after all (such “support” is often conditional, and based upon whether the marginalized person can make the non-marginalized feel comfortable at all times), or you just want an excuse to be racist toward white people! Or some other ridiculous thing.

For me personally, the willingness that I “should” have to help well-meaning folks learn is also an energy issue. I am a person with disabilities, several of which I have written about at length on this website — and one of which is a pain condition subject to flare-ups. Thus, I have to manage my time and energy extremely carefully. Having to explain basic concepts over and over again to strangers on the internet because they’ve deigned to tell me that they “want” to learn — and some of whom may think, by extension, that they are somehow entitled to my time and energy — takes work. Writing takes work; additionally, a lot of bloggers do the blogging and responding to comments thing for free, on their own time.

And sometimes, those of us with conditions that intersect with our ability to do this work end up burnt out, frustrated, or we lose our patience. Though these end results are often nothing personal, they might read like it, and we end up paying the price energy-wise only to have that person who realllllly wanted to learn petultantly respond with something like, “You must not want to educate me, then, if you’re not up to answering all of my questions!” and leaving in a huff. But they reallllly want to learn. . . that is, if someone else does the brunt of the work for them and/or gives them good-ally cookies for just wanting to be educated about all this social justice stuff. Merely wanting is not enough; you have to actually follow through for your good intentions to matter.

There is, thankfully, a solution to this problem: those people who say, or comment, that they realllly want to learn must take responsibility for their own learning. There are several ways that this can be accomplished, among them lurking on blogs for a while before one starts commenting, reading a site’s archives (and most sites have them!), picking up a book (or two), reading some articles online or off. Certainly, there are a lot of things that are privileged about this assertion; of course, not everyone has the time to read about social justice, lurk on blogs, or take similar steps. But what is also privileged is the putting the responsibility for your own 101-type education onto someone else — someone who might not have all of the energy, time and patience that you might.

[A slightly different version of this post has been cross-posted at ham blog.]

I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

(Cross-posted at three rivers fog. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom. Continue reading I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

Anger as a Constructive Force

Note: This is kind of an old post, but I think it’s still useful.

I’m sure that many of you have heard variations on the following:

“You’re just too angry. Your anger alienates people/potential allies and might make them afraid to associate with you! They won’t want to be on your side because of your anger.”

This statement, or a variation thereof, is often wielded at feminists, people of color (particularly women of color), radical progressives, non-mainstream members of the LGBTIQA community, disabled and chronically ill folks, atheists, fat acceptance activists, and others in order to get them to capitulate to some weird, unseen social standard that requires that they not offend anyone even as they fight to be heard and taken seriously, as well as for social and political justice.

There is a difference between being angry for its own sake, and turning one’s anger into action. For whatever reason, mainstream Western culture has decided that people who have historically been put down, devalued and mistreated by those in the majority should fight for their rights, but they should “be nice” while they do so. The messages that historically devalued groups have to get across, even if said messages are quite radical, should apparently be palatable even to the people who have the most social currency in mainstream society. What’s radical about that?

Anger makes people fundamentally uncomfortable, and I think that this discomfort often discourages constructive work. When those who need to express their anger, somehow, are not allowed to do so, the anger can become toxic. Instead of a catalyst for change, it becomes a symptom of a missed opportunity.

My own anger is something that I’ve just begun to embrace after years of stuffing it down and having it reappear at other times, often to my own detriment. Certainly, I may be too angry. I may indeed alienate people with some of my words. However, do I really want those who cannot “handle” what I have to say as allies, if I have to add, for example, rainbows and unicorns and puppies to my outlook on the world in order to make my outlook more palatable? No.

Anger, if used in a constructive manner, can be a great creative force. Most of the cartoons that I draw and have drawn start or started as brief doodles about things that make me or have made me angry. When I can create something that has been inspired by my own strong feelings, I feel much better and more able to cope with things such as my illness, and the physical pain and fatigue that come with it. When I take the opposite tack–that is, when I hold my anger in and don’t do anything with it–I feel worse.

[Originally posted at HAM.BLOG on August 7, 2008.]

Finally, a Dear Prudence column that isn’t rage-inducing!

In the most recent Dear Prudence live chat on Slate, a reader asked the following:

Negativity: I have had a bad couple of years—intermittent employment,
moved twice, lost a sibling. I’m a pretty positive person, but I’m
having trouble keeping my chin up, since that mainly results in me
taking it on the chin.

I have a friend who asked if I was feeling a little down, and when I
admitted it (something that is hard for me), she basically said it was
my fault, and my negative energy was attracting negative events. I
would not find happiness or get my old lucky life back until I could
learn to accept what fate was trying to teach me.

I don’t know what’s worse, her idea of comfort or the idea that she’s
right. She didn’t used to be crazy, but this New Age stuff has been
her reaction to being unemployed and living on credit cards. What
should I have said?

I could do without the mental-illness shaming (“She didn’t used to be crazy…”), but does this sound familiar to anyone who’s had to endure similar “well-meaning” advice from people who think you can — and should — just “buck up?” And oh my god, SCARY NEGATIVE ENERGY! I’ve covered the fallacies of The Secret and related pablum before here on FWD, so let’s take a look at advice columnist Emily Yoffe’s response:

Emily Yoffe: The Secret and other garbage of that ilk suggests people
abandon friends with problems so that they don’t get “infected” by
their negativity. So you could have said you understand her new set of
beliefs mean you two have to keep your distance and that you wish her
all the best.

I actually think the disease metaphor works well in showing just how ridiculous the notion of an “infection” of negative energy really is. To sum up: The flu is something you can get “infected” with, and it’s not fun. As for negative “energy,”  — if “positive thinking” works so well in combatting anything that’s not sunshine and rainbows and unicorns pooping glitter, why do positive thinkers and Secret devotees insist on dumping people who don’t fit their exact super happy worldview? Either the super POSITIVITY!!11 worldview is incredibly fragile and therefore must never be questioned, or there’s some major cognitive dissonance going on — perhaps both?

For Cereal, Time?

I was perusing the internets doing some research for work when I came across this lovely list from Time.

Seems some orthopedic surgeon is now the ultimate authority on all things medical…in every iteration thereof. Doesn’t matter what specialty or what your history. Dr. Scott Haig is now the expert, so stop what you are doing, right now. Do not pass Go, do not collect $200, and certainly do not trust whatever you have worked out in your personal health care, and just do what Our Dear Dr. Scott says.

Of particular interest to me is that the Great Dr. Scott says that narcotic pain medication “never” works for chronic pain. Ever. You should never use it unless your pain is acute, and if you are using it for such, you should stop, now. Forget your medical history, or whatever other methods you have tried or that have failed you:

The drugs are relatively easy to get and tempting to take, but you should never use them for chronic pain. Narcotics addiction is insidious. The drugs change who you are, and over time they make any and every pain worse.

This tidbit makes me want to say something to Our Dr. Scott…something that starts with an “F” and rhymes with “uck You”. Because Dr. Scott does not know my pain, or what I have been through trying to manage it, or how for the first time since all of this started I am living a semblance of a life that doesn’t leave me feeling worthless.*

I have some other very interesting and loud thoughts on Our Dr. Scott’s advice on “Exercising an Injury”, “Overplayed Allergies”, and “Google Abuse”, but I will let you all have at it now. I am going to go chronically abuse some narcotics.

/sarcasm.

*As in, each person has to decide what they can live with, want to live with, are willing to live with in terms of their medical care, and base their decisions on that personal choice insofar as it is in their control to be a part of that choice. It is part of my privilege to be able to do so and to say “I want to be able to do these things, and these side effects are worth it”. It is not that way for everyone, and I want to acknowledge that.

I’m not here for your inspiration

I think I upset one of the newer employees at my favourite tea shop today. Most of the staff are used to my cynical reactions to newspaper discussions of how inspiiiiiiiiiiring people with disabilities are at this point.

But let me begin at the beginning.

Actually, no, let me begin with something important, since recent events have told me one cannot be too careful.

There is a certain way news media prefers to talk about people with disabilities. They like to tell our stories in a way that’s “inspiring”, that’s about making non-disabled people feel better about stuff. “Oh, look at how brave that person is, being all alive and stuff despite having a disability! I would rather be dead! That person/their parents/their loved ones are so brave and inspiring! I will now put issues of accessibility and disability out of my mind, because I have been inspired!”

These stories aren’t really about people with disabilities. They’re about making currently non-disabled people feel they know something, that they’ve been touched, that their lives could be suffering and badness, but look how lucky we all are. Look at the plucky crippled person, and be inspired. [This is, of course, why Helen Keller is reduced to “hand in water” stories.]

There are, of course, reasons why people with disabilities and their families participate in these stories, and I certainly don’t blame them. I know if someone offered to interview… wait, I’ve been interviewed a few times now about disability, and I did leap at the chance. I don’t think that people who are interviewed for these stories are doing anything wrong. They’re talking about their lives, and describing their experiences. No, it’s the way that these things are spun, the words being used by the reporters to fill in the gaps, that is the problem.

The tendency is so very very wide spread that Haddayr (with the help of Codeman) made a bingo card for us all:

Description follows

Description written by Haddayr:
Are you writing an article that profiles or even tangentially involves a disabled person? Make it easy on yourself: string together these words and phrases with a few voyeuristic references to the person’s body parts, and call it a day!

She didn’t let her disability stop her!
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Thought she would never get to [some activity most of us never get to do]
Courageous battle
He relies on [friends/a guide dog. No fair using electricity!]
Confined to a wheelchair
Then tragedy struck/her dreams were shattered/the unimaginable happened
. . . wants to help others [the ‘bless him’ is inferred]
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Can only communicate through [communication device]
Cheerful/ Never let it get her down/ Positive attitude
Free Space:
BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
Through the miraculous assistance of [something completely non-miraculous]
She refused to give up/give in/succumb
Defying overwhelming odds
She ‘suffers from’ [impairment]
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
[insert some pseudoscience]
Determination
Most of us could never imagine [horrific impairment] happening to us, but…
Every day she has to [take some medication/do some physical therapy]
Special
He has overcome his disability!
. . . proving you can achieve anything if you really try!

So, let’s go back to my story.

I haven’t been following anything to do with the Olympics for reasons I won’t go into here, but I knew exactly what was going on when I glanced at Saturday’s Globe & Mail and saw this splashed across the front:

A Different Victory: When Alex Bilodeau’s brother cheered his gold, the triumph went more than one way. The skier and the painter find inspiration in each other – and neither one accepts limits. Ian Brown travels to the intimate heart of a family.

“Oh gosh!” I said to Don, in my overly chirpy sarcastic voice. “It’s going to be an inspiring crip story, I just know it! Quick, let us purchase this fine newspaper so we can be inspired!”

Poor dude behind the counter proceeded to tell me how inspiiiiiiiirng he found “the brother of the guy who won gold”, to which my response was… less so. “Inspiring crip stories irritate the fuck out of me.”

You know what would inspire me, gentle readers? Curb cuts being cleared of snow so Don & I could get across the street without having to go three blocks out of way first. But I guess when you’re a bitter, cynical, angry person who just hates fun, that’s what you get.

Sadly for all of us, Ian Brown’s articles don’t seem to appear on the Globe & Mail’s website (except perhaps behind the paywall), so I can’t let you read the inspiriiiiiiing story of Frédéric Bilodeau, but I can show you a BINGO card that Don & I filled out while we read it.

Description follows

Description: As above, but with the following squares circled:
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Then tragedy struck/her dreams were shattered/the unimaginable happened
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Cheerful/ Never let it get her down/ Positive attitude
Free Space: BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
She refused to give up/give in/succumb
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
Determination
Special
He has overcome his disability!

Of course, what Frédéric Bilodeau’s story has actually managed to inspire is awesome comments at the Globe & Mail like this one:

Proud for so many reasons

Alexandre Bilodeau has provided something more than his magnificent gold performance (Gold Comes Home – Feb. 15). He has provided an example of the role that individuals with a disability play inspiring us as they overcome their challenges.

Thank you, Alex and Frédéric.

Brian Smith, Toronto

Mr Smith, with all due respect, we are not here to be your thrice-damned inspirations thank you very much. Be inspired! Lobby the Canadian government to provide funding for all universities to be fully accessible to people with disabilities! That would help lots of people with disabilities overcome their challenges!

The point of this post isn’t “here I am, talking about an article you can’t read, and being as sarcastic as possible, aren’t I witty?”. It’s actually to talk seriously about the way disabled people are written about. We’re allowed to be inspiring stories of overcoming adversity – and often those stories focus on the difficulties our loved ones have, and how hard it can be to have a disabled person in your life – or we can be a passive victim of crime. That’s it.

If new media actually presented people with disabilities as we actually are… well, that, gentle readers, would be actual news.

ETA: facesofcathy found that Ian Brown’s article’s up over at CTV. (Why? I don’t know.) Check it out: The Bilodeaus: Elusive truths from an unforgettable family. I haven’t done a side-by-side comparison of the text (I think the headings are different?) but it look pretty close.

Check out the comments if you like to headdesk over how inspiiiiiiiired people find these types of stories.

Who Killed Civil Discourse? Evelyn Evelyn, Marginalization, and Internet Discussion

Hello. I am Annaham (yes, I have a name). I am the person who posted a critique of Evelyn Evelyn on this website, which kicked off something of an internet controversy. For those who’ve just joined us, I made a post about Amanda Palmer and Jason Webley’s side project Evelyn Evelyn, Lauredhel made another post soon after, and things got a little out-of-control, to say the least. Because my post was part of this whole storm of various substances — both gross and not — I feel some responsibility to share my reaction to what’s gone down thus far.

I’d like to take a moment to talk about some basic principles of anti-oppression activism and social justice work that intersect with the work we do here at FWD, as some very specific structural issues and contexts are absolutely relevant in this discussion. Often, marginalized people are encouraged and expected to be sensitive and accommodating to the attitudes and prejudices of the dominant culture and to those of less-marginalized (ie: more privileged) people. However, this sensitivity and accommodation usually does not run both ways. Marginalized people, if they criticize something that (for example) leaves them out or makes them feel awful, are often told that they are being overly sensitive or overemotional, that they just misunderstand intent, that they are exaggerating, or that their tone is not polite enough. They are then expected to modify their behavior — and their self-expression —  to fit with the norms and values of those who are more privileged.

What the less-privileged have to say is usually not accorded much importance, critical thought, or respect, and yet they are supposed to prioritize, be patient with, and generally assign more importance to views, values and norms that are not their own. People in marginalized communities are often expected to educate the more privileged majority. They may be expected to patiently explain basic concepts, sometimes repeatedly. And if those with more privilege decide that they do not agree (with the less-privileged group’s tone, focus, or any number of other things other than the actual argument that is being made), those with less privilege are told, with varying degrees of subtlety, to shut the fuck up.

All the while, the perspectives, attitudes, norms and values of those with more privilege are made neutral. The power dynamics are rendered invisible, because that’s just the way things are, so there’s no point in trying to change any of it. Why are you so angry?  You’re just looking for things to get mad about. You just like being offended. Why can’t you focus on other/more important things? It wasn’t meant that way. You need to hold your tongue until you’ve done x, y and z. Quit taking it personally. You’re ruining everyone’s good time. Stop trying to make everyone pay attention to your pet issue, because it doesn’t affect anyone other than you. Your demands are unreasonable. Stop complaining. Shut up.

And when things don’t go entirely smoothly (which happens often), those not in a position of privilege are often blamed for it: Well, what did you expect, using that tone? You’re the one who brought it up; you’re the one who rocked the boat.

Unfortunately, these tactics are extremely common when it comes folks’ objections against many sorts of media and pop culture critique and/or backlash against critical engagement with cultural works. In other words: These are not new patterns.

I am definitely not saying that everyone has to agree with the critiques that I and others have made regarding Evelyn Evelyn; I am not suggesting that ideological lockstep is a worthy end-goal. What I am saying is that the humanity of marginalized people — those who have traditionally been left out, and who are often on the receiving end of justifications for said exclusion(s) — is not up for debate. The humanity of the participants in this discussion — that of the creators/artists, fans, and those of us who have come forward with critiques — is similarly not up for debate. What I posted, and what I am posting here, was (and is) my take on the matter. I do not, nor do I want to, claim to speak for all PWDs, or all disabled feminists, or all fans of AfP and/or Jason Webley who are also disabled or feminists, or both. We all have our different takes on Evelyn Evelyn and how things have unfolded, and I think it is a good sign that so much discussion has come from this.

As I have stated here on FWD and elsewhere, I am a fan of AfP and have been for a number of years. Many of the people who have raised concerns about Evelyn Evelyn are fans, potential fans, or former fans (and there have been solid points raised by non-fans, too). Dreamwidth’s Anti-Oppression Linkspam community has, at present, four roundups collecting posts on the matter from around the web.  I suspect that many of us who have posted on the Evelyn Evelyn project with a critical eye are not raising these concerns simply to bug or irritate Amanda and Jason, or their fans. However, there are quite a few people who seem eager to dismiss those of us with legitimate concerns as “haters” who just don’t understand art. The hostile messages from “haters” that Amanda has received are not legitimate critiques. These are personal attacks, not arguments of substance.

I almost feel like it should go without saying that I do not support people making these attacks on Amanda, but just to make it very clear: I am very much against people using this controversy — and the complex issues raised — as a bandwagon upon which they can leap to make personal attacks and/or comments about Amanda’s personal life or who she is. Unfortunately for those of us who have been trying to bring attention to Evelyn Evelyn-related issues and seriously discuss them, the “haters” are distracting from these same issues (and are apparently effective at it). I have also heard that people are making threats of physical violence against Amanda. That is not okay. It is never, ever acceptable to make threats of violence against anyone, regardless of your disagreement. That is basic human decency. It is truly disheartening to me, and to the other FWD contributors, that some are using this very difficult situation as an excuse to make horrific threats. We fiercely condemn these attacks.

One of the comments I received was from someone who, as far as I can tell, thought that my post seemed “insincere,” with a bonus implication that I was and am making other PWDs look bad “in the eyes of the abled.” Comments of this sort are often aimed at members of marginalized groups who are expected speak for everyone in their group when confronted; it basically boils down to “You are making other [disabled people] look bad.” I have to wonder why this same thing was not said to the AfP fans who found it necessary to show up here to derail, break out tone arguments,  tell me and my fellow contributors that we are crazy and/or should shut up, and who dismissed us on Twitter as just bitching about the project. It’s interesting, and rather telling, that some fans have used these tactics against me, my fellow FWD contributors, and other people who have critiqued the project, but could not (or did not want to) step back and consider their own behavior.

We were, in various other places around the web, called “retarded,” “angry bloggers,” had the legitimacy of our contributors’ disabilities questioned, and (trigger warning) threatened with rape (link goes to a screencap of a comment left on Amanda’s blog) — among many, many other things. In the comments thread to my original post, I was told that I need to focus on more important issues, that I was blowing things out of proportion, that I was censoring people and/or trampling on their free speech rights by laying out guidelines that specifically told potential commenters  to not leave derailing comments,  and that intent should excuse offensiveness. Eventually, I lost my patience.

There were also quite a few personal-attack comments left in the moderation queue; for obvious reasons, these were not published. These attacking comments were a significant part of why I closed comments on the post, though I did not explain that in my final comment. My decision was not about “censoring” what anyone had to say, or infringing upon “free speech” rights (this is a private website — one that has contributors, commenters and readers who are not only from the U.S.), or only about the fact that I lost my patience after having explained certain concepts over and over again; I and my fellow contributors simply could not deal with the personal attacks, threats, and violent language being left in the mod queue anymore.

Here is just a sampling of some of these unpublished comments from the mod queue (possible trigger warning):

“What’s the matter with you?”

“cant handle it? then just fucking die!”

“fuck u die slow nigga!”

“ONOEZ SOMEONE WANTED TO SMACK SOMEONE SUCH VIOLENCE!!! Typical retarded comment on an idiotic, stupid, moronic, weak, and lame blog. Fucking oversensitive twits.”

I think there is something analogous here to some of the more hateful comments that Amanda received on Twitter and elsewhere, but that is a bit of a tangent.

Going through the mod queue for that post was not an experience that I would want anyone to have. I could talk about the fact that it got to the point where it exhausted me to look at the comments; about the extreme anxiety and emotional hurt I felt while reading some of the comments that attacked me as an individual and/or questioned my mental health status; about how it feels to notice that your physical pain level — already there as a result of a chronic pain condition — goes up a few notches as you read criticism(s) directed not at your argument, but at you. I have a feeling that were I to discuss this in depth, some would likely construe it as “ANGRY BLOGGER BLAMES AMANDA PALMER FANS FOR HER OWN PAIN” or accuse me of using my disability as an excuse for being “too sensitive.” I get more than enough of that outside of the blogosphere.

I need a break from having attempted to be civil and polite and explain very basic concepts to a select few people who have no interest in substantially engaging with me or with others who have raised concerns about Evelyn Evelyn.  Simply put, I need some time to recharge my politeness batteries, as well as my hope that some people — and I include many of Amanda’s fans in this category  — do want to listen, learn and discuss without derailing or attacking. I wish I could address every critique that’s come our way, but I am pretty worn out (and I suspect that many of you — disabled and not — know the feeling).

In the interest of full disclosure, I should mention that Jason and I have been communicating via e-mail — he emailed me shortly after my other post went live — and discussing many of these issues in more detail; for that, and for his willingness to engage, listen, and consider the critiques that have come up, I thank him.

I wish Amanda and Jason success with their endeavors; I do not wish to shut either of them up or, worse, endorse that Evelyn Evelyn not go forward at all. There is, as I have said, quite a bit of difference between critiquing a portion of someone’s work and wanting to shut them up or silence them; I have aimed for the former. I ask, however, that they engage critically with and take seriously the numerous points that have been brought up, both about (trigger warnings apply to the first two links) specific aspects of the project and the response to critiques so far. Taking on such huge issues will doubtlessly be a difficult and ongoing process. Of course, Amanda and Jason will probably interpret all of this in different ways. What happens next does not have to be “perfect” — nor 100% Annaham-approved (because that would be unrealistic and silly), but it would be fantastic for these two very talented musicians and performers to bridge the gaps between their good intentions and what actually shows up onstage and on the album.

What are the ultimate lessons here? What can people on all sides of this discussion take away? Right now, I don’t know, and for the moment, that is okay with me. I still believe that better things are possible. I refuse to give up that hope.

[Special thanks to meloukhia for ou’s help in putting together links and other material for this post.]

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