Transcription with description follows.
Ableism is discrimination against people with disabilities, including the expression of hate for people with disabilities, denial of accessibility, rejection of disabled applicants for housing and jobs, institutionalised discrimination in the form of benefits systems designed to keep people with disabilities in poverty, etc.
1. Ableism has a dictionary definition.
The Oxford English Dictionary traces the world ableism back to 1981; likely the word was in use amongst activists before then.
[< ABLE adj. + -ISM suffix, after RACISM n., SEXISM n.2, etc. Compare ABLEIST adj., and also earlier ABLED adj. 2, ABLED n.] orig. U.S. Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people. 1981 Off our Backs May 39/1 ‘Ableism’that is, the systemic oppression of a group of people because of what they can or can not do with their bodies or mindsis the result of..ignorance. 1993 R. HUGHES Culture of Complaint iii. 162 But certainly clause (3) made it clear that he was against racism, sexism, ableism, lookism and any of the other offences against social etiquette whose proscription by PC was already causing such mirth and laughter among the neo-conservatives. 1994 Canad. Woman Stud. Fall 92/2 Just as there is racism in the feminist movement, there is also ‘ablism’. Able-bodied women have not fully accepted women with disabilities. 2006 C. OYLER & B. HAMRE in C. Oyler Learning to teach Inclusively viii. 145 Although racism and sexism..are recognized as serious challenges to fairness, equity, and democracy,..ableism is often not even acknowledged.
It defines ableist as “Characterized by or exhibiting ableism.”
I mention the dictionary definition because people often claim that ableism is a made-up word that internet activists created just to annoy them, as opposed to a word with history that people with disabilities ihave been using to define their experiences for at least 30 years.
2. Ableism can be deliberate.
B. Clint Eastwood argued vehemently that 10 years was far too short a period of time to expect that businesses would follow the Americans with Disabilities Act (ADA) and painted himself as a little guy fighting back against the “sleazy lawyers” preying on “the disabled”, rather than as someone who had been breaking the law for 10 years and was now choosing to fight for his right in court to continue to do so. John Stossel argued earlier this year that the ADA might require businesses to be accessible, and this was unacceptable 20 years after the ADA had been passed. [Content warning: John Stossel]
C. Where’s the Benefit has spent the last few months detailing out how cuts in spending will affect people with disabilities. It’s hard to pick just a few examples. How about the Member of Parliament who declared that anyone who was on Twitter too much wasn’t really disabled. Or what Disability Living Allowance (DLA) actually does being misrepresented by both the government and the press?
‘Purposeful exclusion,’ I said, ‘there is no way anyone could design this, approve this and build this, without knowing that people with disabilities will never be able to use it. That makes it purposeful. The fact that only certain people can now use it make it exclusion.’
‘I’m sorry,’ she said but I interrupted.
‘This is bigotry in concrete, this is prejudice made of steel and glass, this is how builders and designers and hotel managers spit in the face of those with disabilities. They knew, they didn’t care, they did it anyways.’
E. Politicians across Canada, who make 30 second advertisements that are carefully scripted to make the best impact, don’t use the subtitling option when they upload those same 30-second scripted videos to YouTube. But I guess some politicians are okay with their videos looking like this (image description below):
Image description: Michael Ignatieff (older white dude in a sensible blue shirt and tie, his hair a bit windblown) with the caption “Don’t let anybody into Medicare”.
Actual quote: “Don’t let anybody intimidate you”.
3. Ableism has an academic definition.
Here’s a good example:
Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.
Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.
You can also get a degree in Disability Studies. There is a Disability History Association. There are several academic list-serves dedicated to discussion disability. You can go to disability-studies focused conferences. You can go to Deaf-studies focused conferences. You can get a degree in Deaf Studies. You can read a wide variety of academic books that discuss the history of ableism.
Or you could read people talking about their lives on their blogs. There are a lot of blogs where people talk about experiencing ableism.
4. Ableism can be accidental. This doesn’t make it okay.
A. I don’t think Google woke up one morning and decided to make some of their products completely inaccessible to certain users. I know they managed to pull it off anyway.
C. I don’t think Canada’s Minister responsible for Disability-related issues deliberately sought out a wheelchair-inaccessible space for her constituency office. I do think continuing to have it 7 months after this was pointed out to her in Parliament is deliberate, though.
5. Ableism kills.
Record of the Dead: October 2010
Record of the Dead: September 2010
Betty Anne Gagnon and Murder Most Foul
Quick Hit: Parents of Disabled Children
Tracy Latimer is dead because her father is a murderer
I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.
Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication. Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?
One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.
I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.
We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.
These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?
Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?
How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?
Here’s some nostalgia for ya, gentle readers!
My dad, who was completely AB for the record, lived alone in the home I now own, and for a good portion of my life had many of his needs taken care of by members of his immediate family. My Grammy did most of his laundry, unless my aunt happened to be there doing laundry on Dad’s laundry day. My aunt, who was a book keeper for the family business, handled Dad’s bank account; she paid his bills for him back in the days prior to auto bill pay and signed most of his checks (most of my birthday cards suspiciously looked as if they may have been signed by her as well, to this day I can not tell their writing apart in some instances). It isn’t that my Dad couldn’t take care of himself or wasn’t an adult, but that they just simply did it for him after my parents divorced and he was living alone. Of course, Dad did things in return for Grammy, like grocery shopping and yard work after she wasn’t able to do it for herself…but that is another story for another day. Some people talk about ‘love languages’, and this is one spoken by this side of my family.
I don’t know that my aunt resented having that responsibility. I don’t know if any of Dad’s other siblings, all married with kids, resented this arrangement. I don’t really care, because it was something that was worked out between them, whether spoken or unspoken. There was, more than likely, a lot of traditional and gendered reasons why this arrangement took place. It also maybe had a bit to do with my grandmother being widowed, my Dad being her only child that was single and living alone, and who had the time to spend with her, taking her to Senior Breakfasts and stopping in for coffee in the morning after his night shift. It worked for them.
Perhaps this is why, when I read this letter sent to Emily Yoffe, AKA Dear Prudence, at Slate Magazine which was passed on to me by s.e. smith, I am inclined to find the myself rolling my eyes at the letter writer (emphasis mine):
Q. Reston, Va.: I have a 30-ish sibling with a health issue that has prevented him from working for the past four years. My parents support him—his own townhouse, car, new clothes, food, medicine, etc. They do everything for him (laundry, groceries, errands, etc.) Although his illness is real, he also spends a lot of time on his social life (out on the weekends, going to bars, etc.) and dates. In contrast, my wife and I (who live 10 minutes away) are trying very hard to stay afloat in this economy with small children, a house we paid for on our own, cars we paid for on our own, etc. We don’t receive much help (even babysitting). I can’t help but feel as though I am penalized for being functional, and I feel a great deal of animosity toward my family. Now, my parents are starting to ask me to help out my “poor” brother more, when my own family is already stretched incredibly thin for time/money. If it were up to me, I’d tell my brother to start acting like an adult and do more for himself. My parents would be horrified and upset. Any advice for getting through this tactfully?
Yes, yes. My brother has more than me! And he didn’t have to work for it! It’s not fair! (Sorry, I had a flashback to… well… my whole childhood.) I would love to be him, with all the damned free time and cool stuff and the devotion of my parents!
Too bad that the special perks come with strings. In my Dad’s case it was solitude and possibly depression, which I won’t pretend didn’t show in his demeanor. In the case of Reston, Va.’s brother, it comes with unspecified (thankfully he had the tact to leave this personal info out) medical conditions. We really don’t know the extent of them. We don’t know how much mobility this person has, how it impacts his daily life, if the reason he can’t work is due to pain, or what the disability is. This is mostly because it isn’t our damned business, but the point is that the grass isn’t always greener. Sometimes it is just sod.
Our good friend Reston, Va.’s brother isn’t being a Good Cripple, either. While his parents are doting on him for whatever their personal reasons are, he has the nerve to want to have a social life. He even goes to bars! We all know that bar ALWAYS means loud, rowdy club where every person is inebriated from imbibing in copious amounts of cereal malt beverages until wee hours of the morning, and never a quiet place where people can sit, talk, perhaps enjoy quiet music and a couple of cocktails or just a sandwich and the [insert sports team] game. There is quite a huge difference.
Reston, Va. wants to define the terms of what adult behavior is, and the hard truth is that “adult” doesn’t mean the same thing for every person. Having 2.3 children, a house, and a car while punching a time clock every day isn’t the universal litmus test. I read this letter as more of a cry that Mummy and Daddy aren’t babysitting more often so that he can go out once and a while or aren’t helping him with expenses than anything else.
Needless to say, I was not impressed with Prudie’s answer (again, emphasis mine):
A: If your brother is capable of hanging out at bars and going out on dates, I’m wondering why he’s not capable of doing his own laundry and getting his own groceries. It sounds as if despite his real problems, your parents are only exacerbating his dependency. They’re probably worried about when they’re no longer around and are trying to line you up to fill in for them.
You need to have a talk with your parents about the present and the future. Explain that despite his illness, it would be beneficial for the entire family if your brother took more responsibility for himself. You can say you love your brother, but you don’t have the financial or emotional resources to take care of him, and you in fact think more energy needs to go into helping him be a productive member of society. If they don’t want to hear your message, that’s their business. But you need to make sure they hear yours that you can’t take him on.
I am irritated to no end the way that Prudie here equates the ability to do laundry and grocery shop with being a “productive member of society”. Also, the way that it is obvious that one activity is the same as another, and that obviously if the brother is able to do one, since she can so capably glean from the letter exactly what the brother’s limitations are, he must be able to do all the others. Clearly, being disabled means that we must sit at home, in the dark, crying about how miserable we are if we are to ask anyone for any kind of help.
Prudie might be shocked to hear that PWDs are not all forcibly sterilized anymore (though it still happens) and that many of us manage to *gasp* have sex lives. Some of us manage to accidentally enjoy ourselves with full, meaningful social calendars.
But that doesn’t negate our need for accessibility, assistance, and actual empathy. Which she lacks. But based on the letter I see her, she won’t be lonely.
I fully support this letter writer setting boundaries for what he is willing to take on with regards to the care of his brother, especially since, honestly, it seems that he is more worried about what he is not getting that is equal to or greater than his brother’s benefits. I wouldn’t want to be cared for by someone who didn’t want to be part of my life or who would begrudge me having something that gave me moments of happiness. I don’t want people like that close to me. It is why people are afraid to have Facebook pages or interact publicly: the policing of what PWDs should be allowed to do is so rampant that they even lose benefits because they aren’t disabled enough in public. Boundaries are important on both sides, though, to protect everyone, and Reston, Va. is under no obligation to hurt himself or his family financially to care for his brother.
Yoffe was so off base in her response, though, that she was holding a puck when the first pitch went out.
Also worth noting is that has seemed to leave the brother out of this conversation altogether. Everyone seems to want to talk about him and his needs, how helping him will affect them, but I see no mention of talking to him about what he actually needs or wants. It is completely possible that Reston, Va.’s brother would prefer to get his own groceries or that he doesn’t need his socks folded, it is just that no one has bothered to ask.
Turned out that during all those years my Dad was able to balance a checkbook after all. He let my aunt do it because it made her feel like she was taking care of him because he was alone, since my Dad’s family is fairly close-knit. They did things like that for each other, not because the other couldn’t do them, but because they cared for each other, and that is how some people show it.
People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.
Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.
But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.
These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.[1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.]
At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.
I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.
As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!
I think there’s so much here to talk about. Please, tell me your thoughts.
I love advice columns almost as much as s.e. smith, and I especially love ou’s deconstructions of them, so I get pretty stoked when ou passes them along for the rest of us to take a crack at them.
This one comes to the the New York Times’ Social Q’s from a mother who is getting a little bothered by the imposing looks of strangers when they take her daughter out in public:
Our 19-year-old daughter is disabled. She’s ambulatory, but walks with an unusual gait and is cognitively disabled. Wherever we go, people stare at her. Not glance, they stare. Recently we were out to dinner, and the woman at the next table couldn’t take her eyes off her. I wanted to say: “This is not dinner theater, and our daughter is not your entertainment.” But I didn’t. Most times, I just stare back and hope the gawker gets the message. Is there a better way?
Paulette Mann, Rye, N.Y.
I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them. Or asking them awkward questions about their condition. Or talking about them with your friends as if they aren’t right there.
I can only come close to imagining what Ms. Mann’s emotions must roll through when she wants to protect her daughter. How it must feel to want to shield her from all that uncomfortable awfulness. She is right to react the way she does, and to feel the way she does. Most of us with children want to do whatever is in our power to protect our children while we raise them to independence (or even in this case, possibly she doesn’t live at home and they are just enjoying some time out together). Here, Paulette is asking for advice on how to help with that deflection. People often turn to advice columns because it seems that they have exhausted other avenues. I applaud Paulette, actually, for taking this extra step, because I know how it feels to want to protect your child when it feels as if you can not.
I feel like the response that she received was anything but helpful to the situation that Paulette Mann drew out for us. Let’s have a look:
First off, let me apologize to you and your daughter on behalf of all the Lookie-Loo’s out there. That they don’t mean any harm is beside the point; you shouldn’t have to deal with them.
Well, Philip Galanes starts off OK. He sure got that right! *searches for cookie*
But now I’m going to impose another burden on you (as if your family weren’t shouldering enough of them). The next time you encounter a rude rubbernecker, like the wide-eyed woman in the restaurant, just smile and ask: “Would you like to meet our daughter?”
Yes. That sounds like it is exactly what she wants to do! Paulette Mann wrote to you, saying that she wants people to leave her daughter some privacy, and you want to have her now force her daughter to meet strangers! Here! Shake her hand! Come over to our table, invade her space and maybe you can ever startle her and frighten her by being a stranger! Without knowing more about this young woman, all I can say is that this is terrible advice to give to a mother who is asking for a police way to tell a stranger to piss off while her family is trying to enjoy a nice meal out. Without the Britney Spears following (a woman in another group of people I feel have invaded privacy).
Not to mention, let’s place more burden on a caregiver (because, if I don’t talk about the caregivers someone is going to run in here and call me insensitive). A parent needs another burden, amirite? As if we are not keenly aware of all the burdens we carry as parents. All we are expected to bear as we guide a child to independence. As a parent of a seemingly AB/NT child, I can not begin to understand what it is like to have that extra layer of responsibility raising a child with disabilities, but I can understand parenting from a disabled parent perspective. The pieces are different, but I am willing to bet the energies even out as they fit together similarly. “Impos[ing] another burden” is just what this mother needed, for sure. Smashing advice. Brilliant.
Oops. Was that sarcasm?
My hunch is when they shake her hand, they’ll begin to see her as a human being — with feelings and everything — and not some curiosity. Maybe then they’ll show you some of the respect (and privacy) you deserve.
It’s asking a lot, I know. But it may make a difference.
I don’t know that the best way to demand privacy is to invite others to invade it. I don’t know how that would affect her daughter. I don’t know how that would affect Paulette’s energy stores. I don’t know a how to do proofs on a Geometry test.
What I do know, is that, as a parent, this advice would have really felt hollow and a tad overwhelming. I don’t know that Galanes really had a handle on what he was suggesting. I can not imagine introducing a child to everyone who stares at her, and I can’t imagine that it would be a positive situation. Perhaps I am way off base, and I am willing to admit that if I am wrong. My own Kid would not enjoy that kind of invasion. Without knowing Mann’s daughter I couldn’t say for sure. But I am willing to wager that it isn’t a burden that Galanes had any right to place on her at all.
A special thanks to bzzzzgrrrl for the link to this letter!
I was sitting in the lunch room at work with a group of co-workers, flipping through the newspapers. I came to an article on the suicide of Marie Osmond’s son, which led to the whole table discussing the incident. And it was immediately underlined for me how little most people know about mental illness and depression. Here’s a brief list of some of the questions and statements that came up during the discussion, the entirety of which I spent shrinking into myself and trying to be invisible:
- “Is depression even a real disease?”
- “People who commit suicide don’t really want to die – evolution wouldn’t let us have suicidal tendencies because it goes against survival.”
- “It must be because his mom had mental health problems too.” Someone inquired if depression was hereditary and the original speaker replied “No, but being around depressed people can turn you into a depressed person.”
- “I once knew a bipolar. She married my cousin and my mom got so mad, like you should never marry a bipolar because it’s not a good idea for them to have kids.”
Finally, a young man told a long story about his ex-girlfriend, who had experienced major depression, and how it affected her and the serious limitations it caused her. It was a great illustration of the reality of depression and the changes it can cause in day to day life. It was unfortunately concluded with a “so that’s why you can’t be in a relationship with those people, it’s just too hard.”
We’ve got a long way to go, y’all.
I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.
Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.
It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.
“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.
He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.
A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”
Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”