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"inspiration porn" annoys disabled people
July 10, 2012 10:37 PM   Subscribe

We're not here for your inspiration says Stella Young on the ABC's "Ramp Up" disability gateway.
Pictures of people with disabilities going about our everyday lives posted on facebook and twitter as "inspiration porn" shame and objectify those of us they pretend to represent.
posted by wilful (49 comments total) 25 users marked this as a favorite

 
My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing.

This is a thing that no one can ever win. I will continue my plan of just politely ignoring everyone in the entire world.

If no one talked to her, that sentence could be "I feel marginalized and ignored by society for my disability. People look away and don't talk to me."
posted by OnTheLastCastle at 10:58 PM on July 10, 2012 [9 favorites]


Then again, it has never occurred to me to be inspired by someone boarding a train because they are disabled let alone to say that out loud. Talking about something personal like that (and your health is personal, no matter how outward the signs of ill-health or disability are) is just rude.

So she hates rude people, I guess?

Me too! A game that cannot be won.
posted by OnTheLastCastle at 11:02 PM on July 10, 2012 [1 favorite]


There is a whole spectrum of behaviour between "not talking to people with disabilities" and "congratulating people with disabilities for catching the bus". In the middle somewhere is "not being a dick".
posted by robcorr at 11:03 PM on July 10, 2012 [67 favorites]


There's an interest podcast on the BBC, "Ouch". It's by disabled people, for disabled people. Listening to it has been an interesting window into their world, and I liked how there is really no concern with viewing their lives in comparison with non-disabled people. Plus the presenters have british accents and sharp senses of humor.
posted by benito.strauss at 11:28 PM on July 10, 2012 [7 favorites]


In our household, condescending praise is known as kibbling, as in giving a pet a kibble treat as reward for a minor but desirable behavior. I think Ms. Young is rightly unhappy with being kibbled for everyday life.
posted by gingerest at 11:31 PM on July 10, 2012 [24 favorites]


I kind of feel for her. I'm not disabled, so I don't share her exact story, but being gay in public does sometimes get the same attention. (And sometimes other sorts of less favorable attention). When you stray outside of the "norm", everything you do becomes "other", too, no matter how mundane or personal. No matter what you're doing, you're being constantly reminded that you're overcoming this great struggle. Catching the bus to work? Defeating adversity! Holding your partners hand in public? Rebelling in an act of true love!

This is the main light we show disabled people through. They rarely are shown in ads, in tv shows, etc. Unless, of course, the disability is some kind of hamartia essential to the plot. Disabled people are to be revered, or pitied, never viewed as equal human beings.
posted by FirstMateKate at 11:32 PM on July 10, 2012 [6 favorites]


"Life's a piece of shit, When you look at it..."
posted by mrducts at 11:34 PM on July 10, 2012 [2 favorites]


This reminds me of an earlier post where boobs simultaneously draw too much attention and neglect....
posted by c13 at 11:42 PM on July 10, 2012


I found the article interesting food for thought but the two arguments were a bit contradictory. At one time she is saying "why are people paying any attention to my life, I do the same stuff everyone else does, it's nothing special." And then she jumps back to "eff Scott Hamilton! Life is hard! Try staying optimistic during all these struggles!"

Obviously I don't believe that because there are struggles people should feel free to come up and congratulate her on surviving another day. There is definitely an unfortunate sense of people saying "thank god I'm not as bad off as this person" when they post those images. I just think the article would be better served removing the specificity of the Scott Hamilton quote and just focused on the general inspiration porn.
posted by matt_od at 11:43 PM on July 10, 2012 [1 favorite]


As is so often the case, The Onion got there a long time ago.
posted by George_Spiggott at 12:05 AM on July 11, 2012 [9 favorites]


I found the article interesting food for thought but the two arguments were a bit contradictory. At one time she is saying "why are people paying any attention to my life, I do the same stuff everyone else does, it's nothing special." And then she jumps back to "eff Scott Hamilton! Life is hard! Try staying optimistic during all these struggles!"

Not at all, these are two sides of the same coin, as in both cases the humanity of the disabled person held up as paragon of virtue is erased.

I'm temporarily able myself, but my wife was chronically ill since her early twenties, and the thing she hated more than anything about her condition was when people told her how brave she was, how heroic to continue to struggle with them day in, day out. Which, well intended as it might have been, did reduce her to these conditions when she herself just wanted to live -- and had -- as normal a life as possible. You just get on with life and sometimes you can't do as much as you could've without the illness, but life isn't a heroic journey in which you overcome your disabilities.

Which brings us to the other complaint, the disabled hero as a magical negro, somebody whose only role in life is to inspire able bodied people by showing that if only you have enough courage or self belief or whatever, you can overcome any adversity and be a winner. Which is offensive enough on its own, but it also implicitly (and often explicitly) judges all other disabled people for not being that heroic, not scaling Mount Everest while blind or whatever, erasing the day to day difficulties that anybody with any chronical illness or disability has to deal with.

It's telling that people in that second role are always shown doing something far removed from this daily reality, whether it's Overcoming Their Handicaps through hitchhiking in the Amazon or following somebody like Lance Amstrong and how his Cancer Didn't Stop Him from Being the World Best Cyclist. Which is all very nice for them, but it doesn't help people who still have to struggle with their own day to day frustrations.

It's also telling that a large part of this narrative is the disabled superstar explaining they are not like all those other disabled people, aren't victims, are unique in their desire and ability to overcome adversity.
posted by MartinWisse at 12:45 AM on July 11, 2012 [16 favorites]


That article was spot on and made some really fantastic points, especially towards the end. I've always hated that Scott Hamilton phrase and she really broke down exactly why, opening my eyes a bit wider and helping me see disability and the problems in the way society approaches it in new ways.
posted by iamkimiam at 12:55 AM on July 11, 2012 [1 favorite]


I've been there, although I don't necessarily care for the focus of this particular argument. As a person with visible CP, my biggest beef with this attitude is that it's impeded me from being recognized in another important way, several times over: as a sexual being. Seriously. I've had "dates" where I felt like the person took my whole existence as a motivational seminar, however much I might gesture in other directions. I usually sigh under my breath, give them a nice feelgood spiel, and cross another local off my list with a smile...still frustrating, though.
posted by StrikeTheViol at 12:58 AM on July 11, 2012 [5 favorites]


One of my good friends has moderately severe ataxia and is legally blind. One night we were sitting at a bar and a young woman struck up a conversation with him. His speech is slurred and garbled and the bar was loud, so he often has to repeat himself to be understood. Not this time.

After the usual yeah great band, love this place, live down the street, blah blah blah, the woman, who was pretty deep in her cups, put her hand on his, looked him in the eyes, and said, "You are SO brave. I mean that."

My friend looked back at her and asked, Youevrfukacripple?"

"What? I... um. It was so nice to meet you." And she skedaddled.

"Dude." I said. "Subtle as a fucking hammer."

He replied, "Just cuz I'm all fucked up doesn't mean I'm not an asshole."
posted by BitterOldPunk at 1:02 AM on July 11, 2012 [53 favorites]


I was standing next to a man who was blind on the subway this morning. I looked at my iPad with my eyes; he navigated his iPhone with VoiceOver. He left the station to the left; I exited to the right. I arrived at work no more inspired or motivated than normal. It's all good.
posted by zachlipton at 1:19 AM on July 11, 2012 [1 favorite]


Oh, I'm so, so glad somebody said this. Every time I see one of those posts on my Facebook feed, I shudder. And as far as I can tell, the reason people love them is rarely even as decent as just the sweet opportunity to use disabled people as inspirational props about which to arrange their own problems, freshly in perspective. No - it's much more a passive-aggressive way of insisting other people - all of them - shut up about their difficulties. Because as far as people like this are concerned, the world's bitterest hardship actually isn't having no legs or cancer or any of that - it's simply the prospect of being asked to show the tiniest little bit of empathy for the miseries other people are facing. Hell no, people just need to quit fucking whining; much better to jam a million-dollar prosthetic leg down everybody's throats and shut them up to start with.

(Also, I've never understood how it's even possible for anyone to believe, as is constantly asserted on Facebook, that people with cancer only have one problem and only want one thing. How thoughtless, stupid and dehumanising. The tragedy of every painful, debilitating, murderous or disabling condition is the cruel fact of all the many things, both ordinary and spectacular, that you still long to be and have and do, but know you might never be able to.)
posted by two or three cars parked under the stars at 1:22 AM on July 11, 2012 [6 favorites]


And holy hell is all of this a good argument for universal design. I've ranted about this before, but haven't really considered the social/emotional perspective of it as well. People might be condescending toward or inclined to objectify the guy using the special wheelchair lift or some other piece of expensive equipment that's only for the Disabled, but it's a lot stupider to objectify the man in a wheelchair who just rode in the same elevator you used, rode up the same entry ramp you just walked up, or went through the same automatic door you just went through. If this is the epitome of "inspiration porn," then universal designs like this (which I happen to get a bit inspired by, though there are practical problems with this particular implementation) nicely sum up the opposite.

As an aside, this blog post I just came across about "inspiration porn" dives into some of the subtext of the genre on a pretty deep level and cites some interesting looking sources for further reading.
posted by zachlipton at 1:55 AM on July 11, 2012 [5 favorites]


It's a valid rant. She hates condescension as much as anybody else does, and that's what it is. Plain old, "I am a perambulatory human, with no barriers to access, so I'm superior, so I'll go out of my way to congratulate you for doing things anyway," condescension.

Soon one will be able to recognize it by the strange metallic taste it leaves in one's mouth, because somebody is going to stick a cane in it.
posted by halfbuckaroo at 2:34 AM on July 11, 2012 [2 favorites]


I grew up with single-sided deafness (I only learnt this term for my condition last WEEK) and a facial disfigurement (Microtia) which I always tried to cover up. I have had such deep, conflicted issues around beauty, ability, and whether or not I am 'disabled'. I have never self-identified as disabled and never asked for any equipment at school or work.

I recently met a blind man who is an advocate on the world stage, and he has been an inspiration to me because he is fighting for equal rights as everyone else in legislation and access to information. He has been an inspiration to me. Have I told him that? Of course not, but slowly, very slowly, I am starting to seek out advocacy tools for myself and am wearing my hair up more often.

I hadn't seen the Hamilton quote until now. It's awful. What I need as someone who is a bit different is the confidence in myself to present myself to the world.
posted by wingless_angel at 3:08 AM on July 11, 2012 [1 favorite]


This argument resonates a lot with similar arguments in other branches of minority politics. For those of us who live most of our lives outside the social boundaries of "normal," there can be a really strong desire to be unremarkable—to briefly inhabit that domain of unmarked-ness, where your sense of self can at least feel more expansive than your dis/ability, race, sexuality, gender, ethnicity, etc.

So, when someone "calls you out" on your minority status—making it the most salient thing about you so that they can feel better in the guise of complimenting you—it can feel like they're tearing you out of your fragile, difficult-to-maintain sense of being "just somebody."
posted by LMGM at 3:26 AM on July 11, 2012 [10 favorites]


Metafilter: Youevrfukacripple?
posted by Renoroc at 4:28 AM on July 11, 2012 [4 favorites]


She is spot on from start to finish, I want to cheer every single phrase. It's a very clear very well articulated rant/argument and there's a lot of truths in it. I'm puzzled anyone shouldn't understand it or find it contradictory.

And the examples of people approaching others just to congratulate them for being visibly disabled and yay still going about their daily life, instead of I dunno being stuck in a corner at home crying, well, just the idea that people could be so condescending makes me cringe.

Oh and this too, I completely agree that the idea that it's all about attitude is so patronising and judgemental at the same time and she puts it very well:
Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it's all about attitude. And we're not allowed to be angry and upset, because then we'd be "bad" disabled people. We wouldn't be doing our very best to "overcome" our disabilities.
And.. I also want to cheer every word that two or three cars parked under the stars wrote above.

It is a bit like poverty porn or the classic "think of the children starving in africa". You can keep moving the goalpost of misery or misfortune until really it becomes a joke, and what does it achieve other than basically saying "ah shut up already there's always worse". Well duh but unless you are really whining and crying about a pimple on your nose like it's the end of the world, we are all allowed to express our frustrations and difficulties, and it shouldn't be different for disabled people, that's the point. Sure with a disability you have extra specific difficulties and frustrations, but that alone doesn't makes you a hero and it doesn't allow others to expect you to be always "positive" and "accepting" and "inspirational", as if that alone would make the practicalities of living with a disability any easier, and yeah, magically transform a flight of stairs into a ramp or make an elevator appear where there's none.

It really is an attitude that's extremely superficial, self-serving and self-centered for those using it.
posted by bitteschoen at 5:02 AM on July 11, 2012 [5 favorites]


The term people may be searching for? Supercrip
posted by edgeways at 5:37 AM on July 11, 2012 [2 favorites]


I have discussed this before,, but: I have a very minor visual issue involving some brain damage due to leaky veins. It makes my life difficult on some days, but nothing I can't generally handle. But, you know, it's a thing, and it sucks. Now, I have some friends with MS, and their lives are considerably harder than mine, and, when I am feeling frustrated with my problems, it helps to remind myself that MS is way worse. And one of the friends with MS, when he is feeling overwhelmed, reminds himself that ALS is way worse. And, this works -- it puts my problems into perspective and helps me accept the vision I have rather than constantly comparing it unfavorably with the vision I remember having, which really only compounds the suffering.

Anyway, I heartily recommend this practice as a way to deal with your own feelings, and I think that is kind of what people do with this "inspirational" stuff. So, the basic urge is not necessarily bad and maybe even good.

Two caveats, though:

1. You have to realize this yourself. Having someone else tell you "gosh, it could be worse" is, in pretty much all cases, short for "shut up and stop complaining." It's not as helpful as the speaker thinks it is, except in that it leaves the recipient silently fuming rather than complaining.

2. The point is, this is your own internal observation. If it helps you, great. You don't share it with the person who has "worse problems" than you, because that's basically stepping on their shoulders to give yourself a boost. With close friends, we occasionally discuss it, but I am not going to involve strangers in my own internal mood monitoring because they did not sign up for that, and they are people, not cyphers who exist to make me feel better.

So I get the impulse, but, like your bathroom behavior, it's a private thing which should not be shared with nonconsenting strangers.
posted by GenjiandProust at 5:40 AM on July 11, 2012 [5 favorites]


I was born with a physical disability, and I agree with much of what the author says and can relate to her frustrations. Being disabled is often so much more about your environment and the attitudes of others than about what you're actually capable of doing.

However, if you read the comments beneath, there is another perspective: that inspiration porn is helpful for the disabled. There a few stories there about disabled people who are inspired to do things that are difficult by thinking about the strength of others in similar conditions. That sometimes getting out and doing what you need to do is a BFD that requires all sorts of mental willpower, and maybe these messages and images help with that. Even though I intensely dislike those memes and the messages they can transmit, it's an interesting take that is really hard to dismiss.
posted by sundaydriver at 6:25 AM on July 11, 2012 [1 favorite]


everybody gets annoyed by somebody for some reason. i try not to go out of my way to resent people if they're erring on the side of being too nice. to assume they're somehow intentionally being condescending seems to be a bit wallowing in the victim role. many of us haven't been around many disabled people, but we've heard enough complaining and nitpicking to be nervous about using the wrong words to them or around them, or trying not to avoid looking at them or trying not to look at them too much. our minds are pattern-oriented and so we can't help seeing difference. some people see it and turn into dicks, but that's not who we're talking about here.

i'm gay and face goofy comments from straight people all the time. but if they're clearly not being dicks about it, perhaps just need some education and exposure and a friendly queer to talk to, i'm rather grateful for their attempt to be nice and show a degree of acceptance.
posted by fallacy of the beard at 7:41 AM on July 11, 2012 [6 favorites]


I'm really thanking $DEITY that I have enough friends with chronic illnesses and such on my FB feed that people don't post those Scott Hamilton things so I don't have to take their heads off. I understand that the stories may be inspiring, but the stories will inspire without telling you how inspired you ought to be.

So I get the impulse, but, like your bathroom behavior, it's a private thing which should not be shared with nonconsenting strangers.

I think of it as more like getting your kink on in public: please do not drag me into your game when I haven't explicitly signed up to play.
posted by immlass at 8:18 AM on July 11, 2012 [1 favorite]


So, I'll take the bait. Inspiration porn is clearly evil stuff... because it's porn, right? People get their willies off looking at it, it takes advantage of the people in the pictures, there is no real value behind it, it is completely puerile, it depicts people who are often the subjects of such photos in a way that other people might find offensive, etc.

How does this relate to the sex-positive destigmatization of porn? Because all those descriptions were about porn, and now we all know that it's just fine if men and women want to do that in front of a camera, some people just like to show off, and we shouldn't stick our noses in what other people personally enjoy, no matter how morally repugnant our parents taught us to think it was.

I do not believe these two uses of the word "porn" are completely different. If so they would have used another word, like "inspiration exploitation" or "disabilityphilia." Words that truly have negative connotations.

So can we not also apply the same rationale for allowing porn as we do for allowing inspiration porn?
posted by rebent at 8:21 AM on July 11, 2012


I got yelled at by a woman on crutches for smiling at her in a convenience store a few days ago; I wasn't really paying attention to what was going on and smiled blithely as she was carrying a basket up to the counter. I did not mean to be condescending, and wasn't aware that I was, but she told me she didn't appreciate having people look at her like she was bringing a ray of sunshine to their lives just by being out and doing things, so keep my smile to myself. Then she told the cashier she was tired of being inspirational, paid for her things, and moved on. I was taken aback, because I tend to just default to smiling and didn't intend it to read as condescension, but I figured it was the microaggressive straw that broke the camel's back.
posted by ChuraChura at 8:25 AM on July 11, 2012 [2 favorites]


but the two arguments were a bit contradictory.

Actually, no. They're not. The two arguments are showing that life is dynamic, as opposed to the static image of happy achievement and cloying representation of one dimensional disabled people.

I really, really appreciated her inclusion of people with silent disabilities. I have a friend with MS who is berated for using her parking permit, has the legitimacy of her mobility assistance dog questioned, but needs a cane less frequently because he supports her. Myself, I have dealt with depression my entire life (well, since elementary school anyway).

What I find most appalling about these images is the subtle victim blaming of those who are disabled and not able to achieve functional living (this was alluded to with the price tag of the prosthetic devices the children are photographed with) with our without a smile.

It's remarkably similar to the American Boot Strap story. The problem with the story is that some folks have $20,000 boots and other people have nowhere to get $20,000.
posted by bilabial at 9:06 AM on July 11, 2012 [2 favorites]


I hope that I am normal in interacting with people with disabilities, but I find some of the assisted technology fascinating. Is it ok to ask about it or make admiring comments? (My first thought with VoiceOver is "That is so cool! I wonder how good the speech technology is.")
posted by Hactar at 9:15 AM on July 11, 2012


>So I get the impulse, but, like your bathroom behavior, it's a private thing which should not be shared with nonconsenting strangers.

I think of it as more like getting your kink on in public: please do not drag me into your game when I haven't explicitly signed up to play.


Point taken, but,, for some people, these two scenarios are, well, not as far apart as one may wish....
posted by GenjiandProust at 9:35 AM on July 11, 2012 [2 favorites]


Is it ok to ask about it or make admiring comments?

That's up to the person you're talking to. Just keep in mind you're commenting about technology that exists to help that person navigate a physical and social world that was explicitly constructed with you in mind, not them (making the assumption here that you possess the privileged type of body). I can inagine being pretty annoyed by a "normal" person being precious and interested in my technology, when it would be YOU who would need some damn technology to get along if you had to live in MY society, instead of I in yours. A very wide range of reactions are possible. In general, don't do this unless it's someone you know well.
posted by Salvor Hardin at 9:37 AM on July 11, 2012 [1 favorite]


Treating disabled people by default like anyone else has always felt like the natural choice to me, except for one thing; when someone's disability includes a severe speech impediment, I find it very difficult to restrain myself from completing their sentences for them; particularly if they seem to be struggling.

I've heard more than once that this is not appreciated, but in many individual cases the person in question has said "thanks", when I do it. It would be hellishly obnoxious to presume to do it on their behalf, unasked, when they're talking to someone else. But when someone's talking to me and it's rough going there are times when it seems like the right thing to do, and they've responded positively to it. I suspect it wouldn't be so agreeable if I did it too abruptly, or guessed wrong and then they had to correct me, making it even harder And I'm sure people in that condition vary a lot in how they feel about it.
posted by George_Spiggott at 9:38 AM on July 11, 2012


Well that's an extreme example, ChuraChura. I was only temporarily in a wheelchair and then on crutches, but it was after a traumatic injury so it was all sudden and difficult to deal with and I wasn't always in the best of moods, but I wouldn't have snapped at someone just smiling casually at me like that. (I only snapped and cursed, silently, between my teeth, at the regular occurrence of people almost bumping into me, but then that tends to happen even when fully able-bodied because that's the way people walk in this damn city).

I can only imagine that woman was in a foul mood of her own, crutches or not, or maybe yes, she had just been through a particularly frustrating day and misinterpreted your smile. But I can think of similar examples of people snapping not involving any disability, and I don't think that kind of reaction is what the author of the post is advocating or sympathising with...

(Oh and of course I also cursed at stairs and unlevel entrances and old buildings without lifts and kept reminding myself that ah at least I only had to deal with this temporarily, so I was very well aware that it wasn't such a big awful deal after all. But... when a friend played that "could have been worse" card and "think of those stuck on a wheelchair all their lives!" when I was having a particularly bad day in dealing with the inability to walk on my legs for a few months, well, I didn't say a thing, because what do you reply to that, without feeling like a whiney spoiled kid? but god was that annoying... sure, I could also think of the people I'd seen in hospital who'd lost their legs altogether in an accident, did that mean I should feel bad for letting out a bit of anger and frustration at my own situation at that precise moment? it's what GenjiandProust said above - putting things in perspective is indeed good for you, but it's quite different coming from others as a misguided "cheer up/stop whining", however well intentioned).
posted by bitteschoen at 9:40 AM on July 11, 2012 [1 favorite]


Sundaydriver: "However, if you read the comments beneath, there is another perspective: that inspiration porn is helpful for the disabled. There a few stories there about disabled people who are inspired to do things that are difficult by thinking about the strength of others in similar conditions."

Yes, Sundaydriver, of course these stories can be inspirational. However, it depends who is telling/sharing the story and what their motivations are. For able bodied people to be sharing these images with other able-bodied people on Facebook, Twitter and other social media sites is to be misappropriating these stories for their own 'inspiration porn' and 'shut up and deal' purposes.

If differently abled people share their own stories to be inspirational, that is another story entirely, especially if their intended audience is other people with similar obstacles, although it's also their choice to be inspirational to those without those limitations.

Many of these 'inspiration porn' images are created by the abled, who grab an image of someone off of Google Image Search and throw them into Photoshop and turn them into posters, completely without the consent of the person who's image has been used. That's misappropriation and exploitation.
posted by PigAlien at 9:53 AM on July 11, 2012


I can't speak to the experiences of disabled people, but this is the perspective of someone playing a support role. This is my opinion and mine alone.

Last year my partner was diagnosed with what has turned out to be pretty aggressive and at times disabling multiple sclerosis. Learning how to deal with all of the symptoms and the reality of a life-long, progressively disabling condition has been a real and very much ongoing journey for her (and for me — learning how to appropriately give support and how to cope with a loved one's pain can take a lot of hard work). However, the shit people say to her or about her is so jaw-droppingly idiotic that I'm not even willing to call it insensitive:
"You know, in a way it's really lucky that you can't go on hikes anymore because now you have so much time to catch up on reading!"
Here's a fun fact! No longer being able to go on hikes without some sort of assistance or accommodation, no longer being able to run or dance or do the things you used to take for granted and that were a big part of your life and identity? Hugely, incredibly, crushingly painful. Not really lucky at all.
"Have you started looking for a new place yet? After all, you're probably going to be in a wheelchair in a couple of years."
Oh yeah, that's a real fucking helpful thing to say. We currently live in a second-story apartment, and the reality is that there's a good chance that stairs won't be as doable at some point down the road. However, they're fine right now and we'll cross that bridge when we come to it. In the meantime, keep your goddamn mouth shut.
"Oh you poor dear. You know, my [cousin/soccer team mate/long-lost aunt] has MS, so I know pretty much all about it. If you ever want advice, I'm here."
You know what? Reaching out and offering support, at least in my experience with someone in the relatively early stages of something like MS, is never a bad thing. So many people in my partner's life have gone radio silent — not because they don't care, but because they're freaked out and don't know what to say or do. That being said, you're almost certainly not an expert. Every case of MS is different, and unless you're a very close family member or friend, that's a pretty condescending offer to make.
Sometimes it's good to reassess your dreams! I know you wanted to go to grad school for a demanding field, but maybe you could do something like volunteer at the library instead!
For fuck's sake, I'm not even going to justify this one with a response. If you can't tell the difference between trying to make reasonable accommodations for your dreams and bringing your life to a screeching halt, fuck off.

---

What all of these responses have in common are huge amounts of unrecognized privilege. Seeing all the unfairness associated with chronic disease and disability has pretty much cast a giant spotlight for me on the privilege claimed by people who aren't dealing with these issues. As usual with privilege, most people have absolutely no clue. The worst thing people say to me, though (and I hear it a lot), is this:
You know, you're so brave to stick with her through all this.
No, I love her like crazy and care for her deeply and don't want anything other than to figure out how to continue to grow as a couple, knowing that this adds a very real challenge to our relationship, one that's never going away. A depressingly large percentage of marriages, relationships, partnerships end over chronic illnesses because the well partner simply can't get their shit together to be able to cope with the reality of the situation. From where I'm standing, to abandon someone because of their pain seems shameful and cowardly. The opposite of that is not bravery. It's decency and it's love.

I realize now that this is the first time I've actually ever written these things down, or spoken to them in any kind of public way. Reading over what I've written, there's a lot of anger here (and the both of us are still at a point where there's a lot of anger and grief at the situation, period). I don't think people are bad for trying to help, even when they say stupid, shitty things. I just think that most people aren't equipped to deal with things like disability and chronic disease. I have no idea what they are supposed to do, but recognizing that privilege and not saying stupid shit is probably a good first step.

Love, support, and solidarity for anybody who's having a rough time.
posted by OverlappingElvis at 9:53 AM on July 11, 2012 [26 favorites]


Thanks for sharing, OverlappingElvis. I can't imagine if that ever happened to my partner, but I love him so much, I could never imagine not sticking by his side. How insulting for people to suggest you are brave for not abandoning someone you love in their time of most need.
posted by PigAlien at 10:05 AM on July 11, 2012 [2 favorites]


Pictures of people with disabilities going about our everyday lives posted on facebook and twitter as "inspiration porn" shame and objectify those of us they pretend to represent.

Reminds me of the ChumbaWumba album, Pictures of Starving Children Sell Records

Sometimes you just have to say it in so many words.
posted by philip-random at 10:54 AM on July 11, 2012


I just think that most people aren't equipped to deal with things like disability and chronic disease.

QFT. If I had a nickel for every stupid thing people have said to me either about my illness or my partner's (including things said by my mother and my ex-husband!) I could buy my whole music wishlist easily. And I have a long wishlist.
posted by immlass at 11:17 AM on July 11, 2012


zachlipton: Even "universal design" will never be universal. Not even close.
posted by Jeff Mangum's Penny-farthing at 11:45 AM on July 11, 2012


I have autism. People tell me I inspire them in one breath and then tell me I need to start acting my age and to drop the attitude problem in the next breath. I can only surmise that I'm an inspiration when I'm acting "normal," not autistic, and am an upsetting problem when I am acting autistic, not "normal." I just try to ignore both sides and keep being myself. Sometimes, it's easy to pretend to be normal, and sometimes it's impossible. Regardless, I'm still me, a normal person trying to live in a world that doesn't like to acknowledge my existence unless it's for some token purpose like being an inspiration. Or to say "hey, donate money to this cause so AG can be normal all the time." That last bit is probably the most frustrating.
posted by awesomelyglorious at 12:35 PM on July 11, 2012 [5 favorites]


At 11 months one of the three words my daughter could say was "doggie." So when she saw a service dog for a blind woman at Ikea she pointed enthusiastically and said, "Doggie! Doggie!" My wife started to explain that, yes, it was a doggie but we couldn't go play with the doggie because it was working right now. Somewhere during the explanation the woman in question approached my wife and yelled at her (yes, yelled) for talking about the dog and what it was doing, because it's humiliating and objectified ... something. The dog? The blind woman? Anyhow, my point is that everyone is capable of being an asshole, and if you approach difficult social situations with the presumption that most people aren't actively trying to be dicks things go a lot smoother.

Also, if given the chance, you should absolutely get into a shouting match against a hostile blind woman at Ikea. You'll regret it later if you don't!
posted by 1adam12 at 4:42 PM on July 11, 2012 [1 favorite]


Here's an interesting response to Young's article in relation to Tracey Emin's London 2012 Paralympic poster.
posted by _superconductor at 4:43 PM on July 11, 2012


I did a major research project on disability activism a few years back, and had the incredible privilege of interviewing several people from a chapter of ADAPT. During one of my interviews, a woman casually mentioned to me that she made a habit of getting herself arrested at ADAPT's civil disobedience protests, and did I want to see her technique for resisting arrest? Well, sure. So this very small, very frail-looking woman slid out of her wheelchair, made herself into a ball on the floor, and challenged me to come try to pick her up.

Now I am not a particularly large or strong person myself, but I did work for one summer at a camp for people with physical disabilities, I have some experience lifting people of about her size, with varying levels of muscle tone. So I tried, and I couldn't get her even an inch off the ground.

She told me later that it once took six police officers to move her from this dead-weight position at a protest. "Do you know how empowered you feel when it takes six cops to move you?", she asked me.

Her story is pretty damn amazing, but the policies that have come as a result of those protests are the truly inspiring part. This one grassroots group played such a critical role in the passage of the ADA, and they're not a household name. That's what's really pitiable.
posted by ActionPopulated at 6:03 PM on July 11, 2012 [3 favorites]


This is a thing that no one can ever win. I will continue my plan of just politely ignoring everyone in the entire world.

If no one talked to her, that sentence could be "I feel marginalized and ignored by society for my disability. People look away and don't talk to me."


Hi. I have Spastic Paraparesis, and sometimes use crutches because it flares up. If you were to see me on the train? Ignore me. Please. It's OK. There's a world of difference between someone recoiling or gawping at the sight of that tragic, pitiful disabled person DARING to show her self in public, and someone just giving a glance or two, and then staring off into space. Oh yes there is.

I would actually prefer it at times that everyone ignores me, because when I'm sitting there with my crutches heading to work, chances are I'm thinking of what I'm having for dinner tonight, when to do my math homework, what I'd do with a naked Diego Forlan and a box of clingfilm, what I need to do at work, if that soy milk's still on sale at Safeway, what metal shows are in town, etc. Having a perfect stranger come up and demand potentially personal, private information at the drop of a hat about my medical condition in a public place? Annoying. And it distracts me from those thoughts of Forlan.
posted by spinifex23 at 6:14 PM on July 11, 2012 [2 favorites]


Even "universal design" will never be universal. Not even close.

*snort* wait until the baby boomers age yet another 10-15 years. UI is a fantastic idea for everyone and given our general population is getting older I suspect UI will become more prevalent, especially in new buildings and especially especially in any building anywhere that is funded trough taxation
posted by edgeways at 8:29 PM on July 11, 2012


You know, you're so brave to stick with her through all this.

Thank fuck I never heard this from anybody. It can be hard to be the able partner sometimes, when you always have to deal with their limitations, especially I imagine when it only develops after you start a relationship. It can be frustrating, it can be difficult, none of us are saints so there will be arguments and we all drop the ball sometimes, but it isn't brave. It's just people getting on with their lives, playing the hand they got dealt.
posted by MartinWisse at 11:47 PM on July 12, 2012 [1 favorite]


I work with adults with persistent mental illnesses, and one thing I hate is when they take me aside with the "you have a special place in your heart" nonsense. I also hate my peers at school talking about how they could "never" work with people who have schizophrenia, as if it's somehow this beyond-thought-difficult thing. Makes me want to smack them. I usually end up saying things like, "It's not like that," but it's hard to know what to say when you're being complemeninsulted - and your clients (about whom you deeply care) are simply being straight up insulted.

Also, I despise the hwole "magical thinking" and "the secret" movement that claims if you truly believe something you will draw it to you out of the universe! 1) Hello victim blaming (and yes, I had someone say people MADE THEMSELVES POOR by "thinking like poor people" who got offended when I pointed out their not having money might have more to do with the whole poor thing than what they're thinking about); 2) it simply isn't true. I work with people with delusions; hardcore delusions, not any of your "global warming isn't real" and "the world is flat" crap - I'm talking full on "there are shrimp in my legs making them move and people moving in the attic who got there through the tiny heating grate in my ceiling" delusional. Delusions about being rich, about money being on its way, etc... are hugely common (these are people living on under 1K a month). Funnily, their SSI continues to be the same amount and the universe doesn't fart money on their head simply for really, truly, deeply believing it should.

Also, it's just mean. I mean, saying to a cancer victim "you have to be happy all the time so that you can heal yourself because otherwise you're just feeding the cancer inside of you with your negativity" is straight up mean and fucked up.
posted by Deoridhe at 4:24 PM on July 13, 2012


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