davidgillon | Linkspam: Disability, whether to 'pass' or 'perform'?

Passing for Normal: The Austerity Politics of Visibility and Invisibility for Disabled People*

Fascinating academic paper by a friend of mine looking at the contradictory pressures of stigma and 'legitimacy' that drive disabled people towards either concealing or 'performing' their disability.

I think the way Naomi links the pressure towards 'legitimacy' into the wider aspects of the 'surveillance society' is really thought-provoking, as is 'the socially acceptable right of non-disabled people to invade the privacy of disabled people', while considering the DLA form as a mandatory, self-enforced version of the panopticon, oh my! Definitely worth a read if you're interested in disability politics, or just stuck between 'passing' and 'performing'.

* Site does require registration via FB or Google, but it's the first time I've seen a registration that lets you control what information is passed.

Current Mood: impressed
Current Location: The Gleaming Spires of Academe

Flat | Top-Level Comments Only

From:

capri0mni

I also registered with the site via email, as I don't have FB, and don't want to use Google for more than I do already.

(it looks like she's got some other papers up that I'd be interested in... I will read and get back to you. :-)

PS: Okay -- I've read and am back.

It's a good -- but the truth of it is sickening. It's not so much "Damned if you do; damned if you don't," but rather:

Damned if you do; dead if you don't.

I wish this were easier to fight, but doing things like assembling to protest will likely be taken as proof that we have no right to. :-/

Edited (post script:) Date: 2015-10-22 12:06 am (UTC)

From:

davidgillon

Damned if you do; dead if you don't.

Sigh, indeed. And when disability activists were condemned as 'extremists' (and this was groups who were writing reports and raising petitions), it was one of the few* disabled MPs in the House who did it.

I regularly see disabled activists being told that if they can send a tweet, they can hold down a job (people saying this include at least one Tory MP) and any attempt to educate is usually met with abuse.

It's undoubtedly a long struggle ahead of us just to stop the slide, never mind get us back to where we were in 2005 or so.

* Even fewer since the election, we're down to him and another Tory.

Edited (Expanded answer) Date: 2015-10-22 12:40 am (UTC)

From:

capri0mni

Sure! You find me an employer who's willing to pay me to work from home, and send in my work via Twitter, and not be upset or dock my pay if one tweet takes me an hour to compose, and I may only manage three a week, I'd take that job!

Jeez!

From:

davidgillon

Yep, me too!

From:

lilysea

I had someone (a judgemental, pushy acquaintance) say once "You post so many photos to facebook, therefore you MUST be able to do paid work."

As though paid work were just as physically/mentally undemanding, flexible, and able to be put down when not up for it as posting photos to facebook is.

In what universe is 30 minutes of posting photos every few days equivalent to being able to do a paid job?

From:

capri0mni

Certainly not this one.

But if anyone can find it, I wouldn't mind living there!

From:

davidgillon

Ugh, *headdesk*.

It really does amount to a form of hate-incident, with the abuser refusing to acknowledge actual reality in preference to their own prejudices.

From:

lilysea

It is, isn't it.

The same woman, the same day: "You know, lugging all that extra body weight around must be exhausting and contribute to your fatigue"

"I don't have the energy to do exercise to lose weight. When I was walking 400m/day I completely stopped being able to shower, do laundry, load the dishwasher"

"Yes, but if you lost weight, you'd have more energy"

She was in my house and I just could not get her to shut up and get her out the front door.

These days I would just say "You need to leave now."

From:

davidgillon

Ugh!

The intersection of disability and weight seems to bring out the worst in people. No one seems to wonder, even for a moment, whether someone's weight might be a consequence of disability or medication, or even just irrelevant!

Worse, doctors are as prone to it as non-medics, if not worse. I'm lucky in not being particularly overweight by the Sacred Dogma of BMI, but I've heard horrendous stories from others.

From:

cxcvi

Is it just me, or is that link not-functional for anyone else?

I just tried it in three different brow... aaaaaah. That would do it. The href has an additional "http:// " at the start of it, that causes it to not work properly. Not sure if you intended this or not.

From:

davidgillon

Well I certainly didn't put it there!

I've just gone into the editor and taken a look, and had to go into the HTML to take out the additional "http:// ", which is being added by the Dreamwidth editor's link widget for some reason. It hasn't done that in the past, so really not sure what's going on!

But the link should work now.

From:

davidgillon

Oh, forgot to mention there's a quote from me in there (talking about an illustrative hate incident that happened a few years ago), though Naomi managed to misspell my surname!

From:

capri0mni

You know, until you mentioned it, and I knew to look out for it, and knew that it was a misspelling when I saw it, my brain read your name as Gill-i-on, too.

From:

davidgillon

Almost everyone does. It's clearly a difficult combination of letters for the brain to process.

(Naomi apologised, and wouldn't even let me give her that out, she pointed out she knows how it's supposed to be spelt!)

From:

capri0mni

Yes, but habits of visual memory and muscle memory are hard to break.

You pointing that out at least put a crack in mine. ;-)

From:

jesse_the_k

D/Led and queued for tomorrow's bus reading. It sounds excellent (in its rigor) and horrible (in the topic) and thanks so much for linking it.

From:

capri0mni

Anyway, the "Right of access to the disabled body" (including the access of the surveillant, judgmental, gaze) that she writes about here, is one of things that nudged the penny into dropping on the idea that disability is treated as a form of monstrousness, in every way except calling it that by name.

Lydia Zeldenrust, in her Master's Thesis "When a Knight Meets a Dragon Maiden" (also available from Academia.edu) cited Jacques Derrida on how Western philosophy classifies "Degrees of Animality":

1) Animalized Animal: such as cockroaches, rats, and cattle, that we're legally allowed, and, in some cases actually encouraged, to kill, without any sanction from the law or our own consciences.

2) Humanized Animal: in our modern world, this would be our pets -- clearly nonhuman creatures that we accept into our human families. For these, there are more sanctions and protections, and though killing them doesn't have the same level of penalty as killing humans, the idea does raise our squick reaction. The medieval world didn't have pets, as such, but, their stories include animals that are sent to give the questing knight a message, and those are treated as special, and given "do not kill" status.

3) Animalized Human: these are clearly, physically, human, but are categorized, for various reasons, as not quite as human as the person making the categories, and, therefore, the category-maker has the same right of access to the animalized human as he (usually male) does to the animalized animal. These would include humans sold into slavery, prisoners of war, criminal prisoners... and the disabled. That's why people feel free to ask me how I go to the bathroom while we're waiting for the elevator, or to pet me on the head, etc..

4) Humanized Human: The top of the heap, the ones who are fully living up to their "God-given" potential: The knight in shining armor, the beautiful princess who kisses the frog (a temporarily animalized human) and restores him to full humanity, the physician in the long white coat who promises cures, and the politicians who decide which of us is deserving and undeserving.

I note that, in this world view, the humanized animal is often treated better and with more kindness and empathy than the animalized human. I think that's 'cause they've moved up a rung, on the ladder toward God, and we're seen as having moved down a rung, away from God.

Of course, I blow raspberries at this whole system; I find it highly suspicious that God's "endorsement" of the best of humanity falls to those who just happen to have the most power and privilege to begin with.

Boy -- you can tell I wrote this under the influence of a double coffee, can't you?

From:

untonuggan

see also: disparate reactions to the killing of Cecil the Lion (outrage) and Samuel DuBose (he must have deserved it; why are people making such a fuss; "#alllivesmatter"; etc). Roxane Gay has an excellent article at the NYT.

that line of invisible "other" (disability/queerness/etc) is so hard because once you out yourself you pass from 4 to 3, at least with some people. but if you pass for 4, what does it mean to your allegiance to everyone in #3?

aside, but related:
wrt animal cruelty, I do animal rescue and...there's definitely a semi-unspoken class/race issue in our society regarding animals. for example, I think a lot of the "no bully breed" rules in apartment buildings are designed to keep the type of people who might keep bully breeds out (i.e. are you a macho working class guy who might want this dog to keep out trespassers? do you have tattoos?). often these rules are in place in more affordable apartments, and people have to surrender their pit bulls no matter the dog's temperament. however if you live in a fancy apartment or can pass a "pet interview" or pay an extra monthly fee for your dog, or you own your place, then pit bulls are a-okay! also, then you maybe are the person who rescued that rescue pit bull from the shelter. IMO, once pit bulls are "re-branded" as family dogs owned by yuppies, rental restrictions on owning them will fade.

i also saw this one reality show about a no-kill shelter in jersey, and the first episode showed an interview with a family who got turned down (black, single mom and kid, probably working class) and a family who was approved (gay couple, well off). it was gross and voyeuristic, *and* I think the first family could have been okay adopters if they'd done some education. also *maybe* having cameras in people's faces might have heightened some of the tension and performativeness!

ugh.

also, even with humanized animals, ppl can be total jerks. will not share some of the "I despair of people" stories, but. I have them. same with the ridiculous animal testing laws for animalized animals.

Edited (fixed html) Date: 2015-10-22 05:08 pm (UTC)

From:

capri0mni

Thanks for fixing the link! I've bookmarked the article so I can go back and read (and reread) it in chunks.

From:

untonuggan

you're welcome!

From:

davidgillon

Oh.

I wish could say that isn't how normies view us, but I really can't.

From:

capri0mni

...Yeah.

On the other hand, the things that get defined as monstrous are also the things that defy categorization,* and when the categories are crap, maybe it's good to be a monster, and maybe the world needs us to be here. After all, if everyone fit neatly inside ready made boxes, then no one would get a glimmer of what's outside the box.

Okay, so maybe I do raise the needle on people's squick meter, because I'm an adult who needs someone to put on her shoes, and get her into bed at night, and they don't know what to do with the idea of me.** But you know what? That's their puzzle to deal with. I've got my own stuff to work on.

*Before Mandelbrot came up with an equation that explains their behavior, fractals were called "Mathematical Monsters."

**See also: a White cop's reaction to a young black man walking in predominantly white, wealthy, neighborhood.

From:

davidgillon

On the other hand, the things that get defined as monstrous are also the things that defy categorization,*

Like the blank areas on early maps, marked 'Here be monsters'

Though the original Latin was 'Hic sunt leones' - 'here be lions'. I can live with that.

That's their puzzle to deal with.

Oh, yes indeed. Though unfortunately they will insist on blaming us for their failure to work out the answer!

From:

capri0mni

Heh. When I was about 3-4 years old, my imagined alter-ego was "Acey, the Lioness." ... I forget whether the lioness evolved from my human imaginary friend named "Acey," or whether it was the other way around.

...Go ahead -- ask me who my favorite Doctor Who companion is. ;-)

But I do remember having a very soft and warm spot in my heart for monsters since I was at least that young. I remember lying on the carpet in my parents' bedroom, paging through Mother's text-heavy mythology books, until I found the illustrations of harpies, and dragons, gryphons, etc., long before I learned to read.

So I'm apt to take "You're a monster!" as a compliment.

From:

capri0mni

they will insist on blaming us for their failure to work out the answer!

An analogy for that popped into my head this morning:

It's like having hunger pangs, because you haven't eaten in five hours. But instead of realizing: "Hey, I'm hungry -- I should grab a sandwich!" You blame the next stranger you see for stabbing you in the gut -- especially if that stranger is clearly "marked," somehow, as different than your tribe.

From:

cloudsinvenice

Re: monstrousness, this is something that has never left me:

In the 70s my mum worked with severely disabled children, and in the course of her training she was in one particular institution of the locked ward type. The actual, official term used for the human beings in there was "monstrosities". They were just people who had very severe disabilities and [language edit - I think disfigurements is a term now used more than what I used earlier - I apologise if I hurt anyone through not thinking about that more], but even knowing what I know about disability history and the long road from unrelenting hiding and shaming of people... I feel that there is a level on which this way of thinking about people has never left us. I hesitated to even bring it up because it's a profoundly upsetting thing, but what you said chimed so much with my mother's story, and I think helps to explain it.

Nowadays we're in a euphemistic phase as regards how society relates to disabled people (and look at me, with my use of language, passively reinforcing the idea that "disabled people" are not a subset of "society"!), and to people who are different in other ways. It seems related to the racism issues around "colourblindness" - if I don't see difference, or claim not to, then I can claim it doesn't affect my thinking about others; that I'm not prejudiced. Likewise, if I don't use words that are clearly dehumanising and hurtful, I can claim that I'm not treating disabled people as a separate, sub-human class - even if my actions and attitudes reinforce that Othering.

As to the human/animal scale, it explains a lot for me. I remember that at the time when things had reached a particularly depressing plateau in the fight against the Welfare Reform Bill, the fight against the badger cull was mobilising, and they'd had a particularly massive response to the call for signatures on the government petition. I hate the idea of a hierarchy of causes - caring about one thing doesn't mean you don't care about others, and many people will have signed both that and Pat's Petition, which we were then working hard to grow. But it honestly felt as if the average person was more moved by the death of a badger than by the death of one of us, and I was very bitter about it at the time.

Edited Date: 2015-10-24 12:54 pm (UTC)

From:

capri0mni

Well, according to Merriam-Webster's online dictionary (American-centric), "monster" is still a technical, official medical, term for those born with certain physical deformities (or biological term, if we're talking about non-human living things, such as plants).

The root of the word goes back to Latin, and the ancient Roman religion, and the word "monstrum," for "omen," or "sign" (same word root in "Demonstrate" and "Monitor" because it was believed that animals or humans born with missing or extra limbs were taken as signs that a calamity would fall on the community.

So it makes sense, if that's your underlying belief system, that the birth of a "monster" in your village would make you afraid, because then, you'd have to start worrying about when the king was going to die, or whether you'd be hit with a famine. But even in that very earliest meaning of the word, there's no sense that the "monsters," themselves, are hateful, or angry -- they're just the messengers of the presumed divine wrath. Still, you'd think it would be in your best interest to hide the monsters really well, so the gods don't see which villages they sent them to, and maybe they'll forget their plans for a plague of locusts, or whatever.

...And even though "modern science" has abandoned that explanation for deformities and disabilities, they still rely on that practice for their "Standard treatment." That's why I think of doctors as one of the most superstitious lots working today. If it weren't for their fancy degrees and chrome-plated technology, they'd probably be classed with the tinfoil hat brigade, a lot of the time.

Edited (fixed grammar) Date: 2015-10-24 02:43 pm (UTC)

From:

cloudsinvenice

I never realised that was where it came from!

Hating the "monster", then would be like shooting the messenger... of course, human beings do have a habit of doing just that. :/

From:

capri0mni

The other analogy I like: It's like hating stop signs as evil,* because most of the time, when people drive past them, they end up getting into driver's side collisions with another car -- so it must be that the signs want to kill drivers. And, to boot, they're the color of blood... Meanwhile, the signs can't read themselves, and probably have no idea they're telling people to stop.

*I originally came up with it to counter the American superstition that black cats are unlucky while in countries with a British commonwealth heritage black cats are lucky (::smiles at your icon::). Both versions of this superstition come from when the Greeks started trading with the Egyptians. Hecate was the Greek Goddess of magic and crossroads, and in Greece, her totem animal was a black rabbit. When the Greeks encountered a country where cats were sacred, Hecate "Adopted" them, too. So if a black cat (or rabbit) shows up walking down the road in the same direction you are, it's confirmation from the goddess that you're headed for something good, but if a black cat crosses your path, it's a sign that there's bad luck ahead. Brits latched on to the first part of that, and Americans latched onto the second.

From:

davidgillon

There were a lot of people very upset with 38 Degrees over that, because 38 Degrees were deliberately pushing the Badger poll, while deliberately excluding disability issues from the poll of issues they should be supporting, never mind that Disability actually had the votes to top their poll. Eventually I got pissed off enough to call them on it, which immediately trended on Twitter, and they admitted that they were in the wrong, and that their popularity contest model of campaigning excludes minorities, but by that time it was too late to stop the WRB and they never made any real changes.

From:

cloudsinvenice

I never knew that much detail about it (I suspect I had to peace out around then for my own mental health), but yes, I always had the impression that disability causes were conspicuous by their absence or lowkey presence on 38 Degrees. Did they ever say why they excluded our issues?

From:

davidgillon

Details are a little fuzzy at this point, but I was told, by the head man at 38 Degrees, that it was partly due to a team member being invoved in a car crash. However he never satisfactorily explained why, after they admitted a problem, with the disability votes having being divided into two so they fell off the poll rather than topping it, they didn't fix it in over 8 months after promising they would do it. And that definitely didn't involve the injured team member. Frankly the explanation didn't add up. I got the impression none of the leadership team at 38 Degrees were interested in disability issues.

The stupid thing was they were doing a huge amount of campaigning over the NHS bill at the same time WRB was moving through parliament, there were obvious synergies that could have helped their campaign, yet they never did a thing to exploit them. It would have been as easy for them to say "Back Pat's Petition" as it as for them to say "Back the Badger Poll". Ultimately it took a handful of disabled campaigners, Spartacus, mostly working from their beds, to inflict the first defeats on the government, and they did it over WRB. With 38 Degrees working with us we might have made that defeat stick.

I've never really forgiven 38 Degrees for that. They did let me blog about disability issues on their site here, but then used that to say they were doing something about it. At which point I gave up on them in disgust. (Incidentally I notice that all the comments on the blog, pretty much unanimously agreeing with me, have now disappeared).

From:

untonuggan

will read when i have brains!

i hate all the disability paperwork (and doctor's forms) so much, because it's always "show me what a crip you are! no really, how little can you do! good. now why do you have such a poor attitude?"

From:

cloudsinvenice

I signed up with Gmail and am waiting for the paper to come through now. It's such a relief to see this being written about academically - as a part-time wheelchair user it's something I grapple with a lot. I've never been one to go looking for enemies, but it worries me that if I were ever involved in a dispute, or the victim of a misunderstanding, someone could casually ruin my life by triggering a DWP investigation into my supposedly not being disabled enough.

Yet so many of us have variable, invisible, complex situations! In theory, that ought to make ambiguity around disability better understood, but I suspect that (as well as the effect of all the propaganda against us) it falls into the crevasse of "I'll make exceptions for this one person I know who is obviously REALLY disabled, but I can't stretch that into a generalised compassion/benefit-of-the-doubt for people I don't know."

From:

davidgillon

Someone reported me to DWP for alleged benefit fraud a few years back. The allegation was ludicrous, but whoever did it was protected by the right of anonymity, while I was pretty much guilty until proven innocent.

From:

cloudsinvenice

It happened to a friend over her Motability car, too. She knew who'd accused her and that it was done out of jealousy and malice, but she still had to go through the whole thing.