Becoming Disabled
August 19, 2016 10:24 AM Subscribe
Rosemarie Garland-Thomson writes for the New York Times: "Disability is everywhere once you start noticing it. A simple awareness of who we are sharing our public spaces with can be revelatory. Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere, when they were in fact there all the time."
> Because he is hers and she loves him, she will learn a lot about disability.
Every parent with a disabled kid lives this life, exactly.
posted by RedOrGreen at 10:49 AM on August 19, 2016 [3 favorites]
Every parent with a disabled kid lives this life, exactly.
posted by RedOrGreen at 10:49 AM on August 19, 2016 [3 favorites]
I love the opening of this essay. NOT long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed. Garland-Thomas goes on to say her friend considered this a compliment. But the weird thing is, I think people do experience it this way. Which, to me, makes it more intractable, not less. I was surprised to learn that my aunt referred to herself as "disabled," even though her mobility was clearly limited and had been for much of her life. There were probably a combination of reasons for this, one being that she didn't have the sort of official stamp or diagnosis that I considered to = disability at that time. But part of it was certainly the type of prejudice Garland-Thomas describes. I didn't see the disability because it was someone close to me.
posted by BibiRose at 11:30 AM on August 19, 2016
posted by BibiRose at 11:30 AM on August 19, 2016
It's worth thinking about this the other way around as well, but which I mean it's worth paying attention to who uses the accessible technology and accessible infrastructure around you. Who really uses the wheelchair ramps, elevators and buttons that open heavy doors?
Once you start looking, you notice that it's almost never somebody with a cane or a scooter or a wheelchair. In fact, it's almost always somebody fully-abled, but inconvenienced. A parent pushing a stroller, a dude carrying four bags of groceries or a rugby player who's walking on bad knees that day. We pay for this stuff saying it's "for the disabled" as though "disabled" is a class of Other People, but 100% of us are a twisted ankle or a bruised knee away from being really grateful it's there, even if that's not today.
posted by mhoye at 12:40 PM on August 19, 2016 [21 favorites]
Once you start looking, you notice that it's almost never somebody with a cane or a scooter or a wheelchair. In fact, it's almost always somebody fully-abled, but inconvenienced. A parent pushing a stroller, a dude carrying four bags of groceries or a rugby player who's walking on bad knees that day. We pay for this stuff saying it's "for the disabled" as though "disabled" is a class of Other People, but 100% of us are a twisted ankle or a bruised knee away from being really grateful it's there, even if that's not today.
posted by mhoye at 12:40 PM on August 19, 2016 [21 favorites]
Glasses. Funny how that's not mentioned.. not once in the article, extremely rarely anywhere else. It's a corrected disability, but then if someone is missing a limb and they wear a prosthetic, _that's_ corrected too. But....
In a past thread on the blue about going of to live in the forest and eschewing modern life, I mentioned I couldn't do that as if my glasses break, I'm screwed: I couldn't navigate well in the day and not at all during the night and I'd be a walking "free lunch" for predators. Same with anywhere else... walking down the street. My glasses break and I'm not totally blinded, but details are very difficult. My best friend though? If that happened to him he'd be really screwed as his eyes are worse than mine. That example could be applied to someone with a prosthetic limb... they might not be totally immobilized, but they're really going to have a hard time of things until you get the replacement.
Glasses though, they're common, so they're "a thing" not "a disability". Maybe if more people lost limbs or got wheelchair-bound it'd end up being no big thing, like glasses are.
posted by Zack_Replica at 1:37 PM on August 19, 2016 [14 favorites]
In a past thread on the blue about going of to live in the forest and eschewing modern life, I mentioned I couldn't do that as if my glasses break, I'm screwed: I couldn't navigate well in the day and not at all during the night and I'd be a walking "free lunch" for predators. Same with anywhere else... walking down the street. My glasses break and I'm not totally blinded, but details are very difficult. My best friend though? If that happened to him he'd be really screwed as his eyes are worse than mine. That example could be applied to someone with a prosthetic limb... they might not be totally immobilized, but they're really going to have a hard time of things until you get the replacement.
Glasses though, they're common, so they're "a thing" not "a disability". Maybe if more people lost limbs or got wheelchair-bound it'd end up being no big thing, like glasses are.
posted by Zack_Replica at 1:37 PM on August 19, 2016 [14 favorites]
"Every parent with a disabled kid lives this life, exactly."
No, no they do not. Many kids with disabilities live lives where they are denied even the identity of their problems, because their parents either do not believe the symptoms reported to them by the child, or because they feel they do not tell their child "bad things".
I grew up being denied that my own experiences were real. I grew up thinking my own experiences were either fake, or normal. That somehow either no one ever felt what I did, or everyone did, depending on the day and the symptom.
I found out later that one of my more psychiatric problems were well known in my family, and that one of my parents had it and took medication for it. Yet I had been told my whole life that everyone always felt those things, and that my inability to cope with them was a fault of my own (without medication).
I grew up being told my pain problems were just sinus issues, and that my medications for those (which made the pain worse in my head) would make them better. If I had a headache, or was in pain, it was because I DIDNT take the medication, yet when I did they got worse. To my parents and doctors credits, most people arent diagnosed with TN until they are in their 60s. I've had it my whole life.
My learning disabilities were both written off as being caused by laziness, or lack of care, or simply being "a bit slow". My difficulty reading, to this day, is written off by my family as "you decided you didn't want to learn to read, because you heard a teacher say your parents would stop reading to you, once you could." My spelling problems were written off as poor study habits, and not working hard enough. My math problems were the same. My inability to follow the clearly very simple explanations of math from my dad was just me being stubborn or slow.
Even as Ive gotten older, and had to start using a cane sometimes, I heard judgement from my family about it. And about my narcoleptic episodes being rude. And about how I shouldn't be so obvious about my problems, because it would make other people judge me to be less than I am. And that surely taking all those pills is really the cause of my problems. And all those doctors are a waste of money.
"Because he is hers and she loves him, she will learn a lot about disability."
"When are you going to be better?" "Stop being so rude." "What's wrong with you this time."
posted by strixus at 1:47 PM on August 19, 2016 [21 favorites]
No, no they do not. Many kids with disabilities live lives where they are denied even the identity of their problems, because their parents either do not believe the symptoms reported to them by the child, or because they feel they do not tell their child "bad things".
I grew up being denied that my own experiences were real. I grew up thinking my own experiences were either fake, or normal. That somehow either no one ever felt what I did, or everyone did, depending on the day and the symptom.
I found out later that one of my more psychiatric problems were well known in my family, and that one of my parents had it and took medication for it. Yet I had been told my whole life that everyone always felt those things, and that my inability to cope with them was a fault of my own (without medication).
I grew up being told my pain problems were just sinus issues, and that my medications for those (which made the pain worse in my head) would make them better. If I had a headache, or was in pain, it was because I DIDNT take the medication, yet when I did they got worse. To my parents and doctors credits, most people arent diagnosed with TN until they are in their 60s. I've had it my whole life.
My learning disabilities were both written off as being caused by laziness, or lack of care, or simply being "a bit slow". My difficulty reading, to this day, is written off by my family as "you decided you didn't want to learn to read, because you heard a teacher say your parents would stop reading to you, once you could." My spelling problems were written off as poor study habits, and not working hard enough. My math problems were the same. My inability to follow the clearly very simple explanations of math from my dad was just me being stubborn or slow.
Even as Ive gotten older, and had to start using a cane sometimes, I heard judgement from my family about it. And about my narcoleptic episodes being rude. And about how I shouldn't be so obvious about my problems, because it would make other people judge me to be less than I am. And that surely taking all those pills is really the cause of my problems. And all those doctors are a waste of money.
"Because he is hers and she loves him, she will learn a lot about disability."
"When are you going to be better?" "Stop being so rude." "What's wrong with you this time."
posted by strixus at 1:47 PM on August 19, 2016 [21 favorites]
I have real issues of guilt related to identifying as disabled.
Oh my God, thank you for saying that! I've never heard anyone talk about this but I am so glad to hear it from someone else. I was officially classed as disabled at my school and I can't tell you how guilty I feel for getting all these accommodations. Mine is an invisible disability, relatively minor as far as disabilities go (or that's what I keep telling myself because I feel guilty thinking of myself as being disabled, ha).
It's like, on the one hand, I was absolutely suffering and absolutely unable to cope without this stuff. But especially with invisible disabilities, it's so easy to be like "yeah but you totally could cope if you tried harder." I get all these accommodations and all I can think is, wouldn't everyone be better off with this? Like, why do I deserve it more than other people? There's the rare moment when something happens and I think "oh yeah, I guess I am disabled!" But for the most part I just feel kind of shitty and super privileged.
Anyway, I really appreciated your comment, howfar. Sometimes it's not an insight that helps as much as just knowing other people are dealing with the same stuff.
Ok, now I'll read TFA.
posted by teponaztli at 3:03 PM on August 19, 2016 [8 favorites]
Oh my God, thank you for saying that! I've never heard anyone talk about this but I am so glad to hear it from someone else. I was officially classed as disabled at my school and I can't tell you how guilty I feel for getting all these accommodations. Mine is an invisible disability, relatively minor as far as disabilities go (or that's what I keep telling myself because I feel guilty thinking of myself as being disabled, ha).
It's like, on the one hand, I was absolutely suffering and absolutely unable to cope without this stuff. But especially with invisible disabilities, it's so easy to be like "yeah but you totally could cope if you tried harder." I get all these accommodations and all I can think is, wouldn't everyone be better off with this? Like, why do I deserve it more than other people? There's the rare moment when something happens and I think "oh yeah, I guess I am disabled!" But for the most part I just feel kind of shitty and super privileged.
Anyway, I really appreciated your comment, howfar. Sometimes it's not an insight that helps as much as just knowing other people are dealing with the same stuff.
Ok, now I'll read TFA.
posted by teponaztli at 3:03 PM on August 19, 2016 [8 favorites]
In a past thread on the blue about going of to live in the forest and eschewing modern life, I mentioned I couldn't do that as if my glasses break, I'm screwed: I couldn't navigate well in the day and not at all during the night and I'd be a walking "free lunch" for predators. Same with anywhere else... walking down the street.
So, on this, I've got the experience of being someone who's nearsighted and heavily corrected, and also as someone who's married to someone who's actually blind, which relates to an experience I had with an eye doctor who was explaining my high risk of retinal detachment, and what I should do if I experienced any of the symptoms (i.e., go to the emergency room PDQ), and I said, in jest, something like: "Fortunately we have a closet full of white canes at home and I know how to use voiceover on my iPhone, so I should be able to get there o.k. Even if it doesn't work out, we've got all sorts of stuff in the house that talks."
She visibly recoiled a bit and lectured me on HOW SERIOUS THIS IS YOU COULD LOSE YOUR VISION. What that drove home to me was that I wasn't (ahem) seeing vision loss as the end of the world because I understand how life can go on after it, but she was.
I mean, of course I'd prefer my retinas stay hooked in there nice and snug, and I'd be very fucking pissed if they didn't. But I do know that can lose one's vision and still be able to walk down the street and so forth without being able to see (and also there's a whole shitload of accessibility issues we as a society need to fix - barriers galore).
So anyway, that opthalmological experience, for me, serves to underscore Garland-Thomson's point here:
Still, most Americans don’t know how to be disabled. Few of us can imagine living with a disability or using the technologies that disabled people often need. Since most of us are not born into disability but enter into it as we travel through life, we don’t get acculturated the way most of us do in our race or gender. Yet disability, like any challenge or limitation, is fundamental to being human — a part of every life. Clearly, the border between “us” and “them” is fragile. We just might be better off preparing for disability than fleeing from it.
posted by mandolin conspiracy at 3:28 PM on August 19, 2016 [11 favorites]
So, on this, I've got the experience of being someone who's nearsighted and heavily corrected, and also as someone who's married to someone who's actually blind, which relates to an experience I had with an eye doctor who was explaining my high risk of retinal detachment, and what I should do if I experienced any of the symptoms (i.e., go to the emergency room PDQ), and I said, in jest, something like: "Fortunately we have a closet full of white canes at home and I know how to use voiceover on my iPhone, so I should be able to get there o.k. Even if it doesn't work out, we've got all sorts of stuff in the house that talks."
She visibly recoiled a bit and lectured me on HOW SERIOUS THIS IS YOU COULD LOSE YOUR VISION. What that drove home to me was that I wasn't (ahem) seeing vision loss as the end of the world because I understand how life can go on after it, but she was.
I mean, of course I'd prefer my retinas stay hooked in there nice and snug, and I'd be very fucking pissed if they didn't. But I do know that can lose one's vision and still be able to walk down the street and so forth without being able to see (and also there's a whole shitload of accessibility issues we as a society need to fix - barriers galore).
So anyway, that opthalmological experience, for me, serves to underscore Garland-Thomson's point here:
Still, most Americans don’t know how to be disabled. Few of us can imagine living with a disability or using the technologies that disabled people often need. Since most of us are not born into disability but enter into it as we travel through life, we don’t get acculturated the way most of us do in our race or gender. Yet disability, like any challenge or limitation, is fundamental to being human — a part of every life. Clearly, the border between “us” and “them” is fragile. We just might be better off preparing for disability than fleeing from it.
posted by mandolin conspiracy at 3:28 PM on August 19, 2016 [11 favorites]
It's worth thinking about this the other way around as well, but which I mean it's worth paying attention to who uses the accessible technology and accessible infrastructure around you. Who really uses the wheelchair ramps, elevators and buttons that open heavy doors?
Once you start looking, you notice that it's almost never somebody with a cane or a scooter or a wheelchair.
NPR had an article last year about the NYC subway system, which is horribly inaccessible (but better than it used to be). For me, it's memorable because of this quote: ""This elevator is a gift from the disability community and the ADA to the nondisabled people of New York," says Wolinsky, who co-founded Disability Rights Advocates."
posted by spaceman_spiff at 4:43 PM on August 19, 2016 [7 favorites]
Once you start looking, you notice that it's almost never somebody with a cane or a scooter or a wheelchair.
NPR had an article last year about the NYC subway system, which is horribly inaccessible (but better than it used to be). For me, it's memorable because of this quote: ""This elevator is a gift from the disability community and the ADA to the nondisabled people of New York," says Wolinsky, who co-founded Disability Rights Advocates."
posted by spaceman_spiff at 4:43 PM on August 19, 2016 [7 favorites]
Once you start looking, you notice that it's almost never somebody with a cane or a scooter or a wheelchair. In fact, it's almost always somebody fully-abled, but inconvenienced. ... A parent pushing a stroller.
A former dancer and stage performer I knew researched how, in another part of the world, female stage performers manage occupational stigma. The former dancer used a special parking pass, and joked about having obtained the pass illegitimately (blackmarket, or through a genuinely disabled friend or something, I forget). She joked about being so lazy that she drove six blocks, instead of walking.
The former dancer used to park in a spot needed by someone else I knew, who also had a parking pass. The other friend was a gospel singer who suffered from gunshot injuries, weighed 400 pounds, and had obvious trouble walking. I felt the former dancer was being an overprivileged jerk whose actions harmed other individuals, and so I joked to her that she should be prepared to be physically assaulted by the gospel singer. (This was not a joke about disability: the gospel singer appeared formidable. In court, I'd seen her take a plea bargain on charges of assault -- although I knew the charges to be false, because I was her alibi. Race is relevant here.) The former dancer didn't really reply.
Much later, it came out that the former dancer had MS (multiple sclerosis). Last time I saw her was during a professional meeting, at a small, relatively intimate party in someone's hotel room. She was open about her MS. Afterwards she was tired, and used a wheelchair to go home. In some specialized milieux, dating back to the 1980s, the former dancer and stage performer was literally a famous lesbian. At some points subsequently, in her current profession, she had been rightly furious to find her sexual identity raised in professional contexts where she had not disclosed it. At the party she joked about being 'a lesbian in a wheelchair' as an advantage for her on the job market.
That was ten years ago; the former dancer now has a wife, kids, and tenure. I just looked at her website, where a photo shows her holding a baby on her lap. The photo could be read as evidence of a rather bad disability, or as evidence that she has no such issue. Either way, I'm sure she's still going to parties and making droll jokes.
posted by feral_goldfish at 5:33 PM on August 19, 2016 [2 favorites]
A former dancer and stage performer I knew researched how, in another part of the world, female stage performers manage occupational stigma. The former dancer used a special parking pass, and joked about having obtained the pass illegitimately (blackmarket, or through a genuinely disabled friend or something, I forget). She joked about being so lazy that she drove six blocks, instead of walking.
The former dancer used to park in a spot needed by someone else I knew, who also had a parking pass. The other friend was a gospel singer who suffered from gunshot injuries, weighed 400 pounds, and had obvious trouble walking. I felt the former dancer was being an overprivileged jerk whose actions harmed other individuals, and so I joked to her that she should be prepared to be physically assaulted by the gospel singer. (This was not a joke about disability: the gospel singer appeared formidable. In court, I'd seen her take a plea bargain on charges of assault -- although I knew the charges to be false, because I was her alibi. Race is relevant here.) The former dancer didn't really reply.
Much later, it came out that the former dancer had MS (multiple sclerosis). Last time I saw her was during a professional meeting, at a small, relatively intimate party in someone's hotel room. She was open about her MS. Afterwards she was tired, and used a wheelchair to go home. In some specialized milieux, dating back to the 1980s, the former dancer and stage performer was literally a famous lesbian. At some points subsequently, in her current profession, she had been rightly furious to find her sexual identity raised in professional contexts where she had not disclosed it. At the party she joked about being 'a lesbian in a wheelchair' as an advantage for her on the job market.
That was ten years ago; the former dancer now has a wife, kids, and tenure. I just looked at her website, where a photo shows her holding a baby on her lap. The photo could be read as evidence of a rather bad disability, or as evidence that she has no such issue. Either way, I'm sure she's still going to parties and making droll jokes.
posted by feral_goldfish at 5:33 PM on August 19, 2016 [2 favorites]
But the truth is, you have no idea who has an invisible disablity. The mom with the stroller, the guy with the heavy bags, certainly someone with bad knees. Being able to carry or push heavy things doesn't mean you don't need other physical accomodations.
Stop assuming people are abled until proven otherwise. It's a bad habit.
Yup. You have no idea why I'm not the very first one jumping up to offer my seat on public transportation or why I'm taking the elevator up a single floor instead of using the stairs, and the side-eye associated with this (see also, the horrific notes people leave folks with legit passes for handicapped parking who don't "look" disabled) is an example of how "fun" it is to not have a visible signifier (cane, chair, walker, etc.) that at least somewhat keeps people from layering shame on top of the (sometimes literal) pain of a physical disability. I don't get the horrible "othering" and condescending behavior that comes from looking "inspirational" but there's plenty of other shit to go around. (Oh and the fun inverse of othering is, "well I'm tired/stiff/dizzy/aching etc. today too but I just push through without making a big deal of it")
posted by blue suede stockings at 5:39 PM on August 19, 2016 [7 favorites]
Stop assuming people are abled until proven otherwise. It's a bad habit.
Yup. You have no idea why I'm not the very first one jumping up to offer my seat on public transportation or why I'm taking the elevator up a single floor instead of using the stairs, and the side-eye associated with this (see also, the horrific notes people leave folks with legit passes for handicapped parking who don't "look" disabled) is an example of how "fun" it is to not have a visible signifier (cane, chair, walker, etc.) that at least somewhat keeps people from layering shame on top of the (sometimes literal) pain of a physical disability. I don't get the horrible "othering" and condescending behavior that comes from looking "inspirational" but there's plenty of other shit to go around. (Oh and the fun inverse of othering is, "well I'm tired/stiff/dizzy/aching etc. today too but I just push through without making a big deal of it")
posted by blue suede stockings at 5:39 PM on August 19, 2016 [7 favorites]
FWIW: I agree that policing of disability - whether elevator use, or parking space, or subway seat - is entirely inappropriate. I suspect Sid Wolinsky agrees.
But: the point intended here is that everyone uses these things. Everyone benefits from them. They are a gift to the city.
(And to everyone posting here about being uncomfortable with self-applying the disability label: you're my folks. You don't need my approval, at all, but if it makes you happier knowing that I actively want you in my community ... I do. We do. You're a part of this world just as much as I am, even if outsiders don't see it.)
posted by spaceman_spiff at 5:58 PM on August 19, 2016 [8 favorites]
But: the point intended here is that everyone uses these things. Everyone benefits from them. They are a gift to the city.
(And to everyone posting here about being uncomfortable with self-applying the disability label: you're my folks. You don't need my approval, at all, but if it makes you happier knowing that I actively want you in my community ... I do. We do. You're a part of this world just as much as I am, even if outsiders don't see it.)
posted by spaceman_spiff at 5:58 PM on August 19, 2016 [8 favorites]
There's this whole cluster of intersecting ideas and conversations that pervade our household.
I'm in my late 30s and a neurological disorder has me contemplating a career change. I didn't make plans to go to school this fall after leaving a long term position this summer for fear of my health and readiness to take on a lot of new. My partner is, well, yeah she's a generation older than I and will retire in less than a decade. We both (currently) make a living in para-sport. My step children both have OCD & Tourette's, and he's autistic. Pretty much unemployable but he's finished an undergrad degree which brings hope.
We have these conversations - how does my seizure disorder compare and contrast with her type I diabetes? What about the legacy of my athletic injuries and developing arthritis in context with her joints that are, simply, older? How do our complaints figure into our professional ones - I mean it's hard to complain about back pain due to stiffness when I remain hyper mobile and the athlete to my right is ataxic with moderate spasticity due to an ABI and the one on the left is kyphotic and has variable tone due to a tethered spinal cord.
In the end everyone's pai, discomfort and relative disability is personal. I think that's why it's so bothersome when others try to take on some small part of it - regardless of their intentions. You just can not walk nor wheel the proverbial mile regardless of the shoes.
That being said hierarchies of disability are totally a thing. It's amazing what a difference in public perception it makes when I sit at the front of the bus and I have the crutch because the nerve damage in my knee is really troublesome today versus when I'm there because I've had a partial complex seizure and just getting on the bus is (currently) the limit of my ability. For the former the seat is nice, for the latter it's pretty much required and at the same time I'm not likely able to advocate for myself.
As with many other axis upon which members of our societies exist along a spectrum the devil is in the details - it's all nuance. It's so damned hard not to over generalize, not to make assumptions based on our own personal experience. It's so damned hard not to confuse sympathy with empathy. It's so important; it's just so damned hard to do right.
posted by mce at 9:33 PM on August 19, 2016 [3 favorites]
I'm in my late 30s and a neurological disorder has me contemplating a career change. I didn't make plans to go to school this fall after leaving a long term position this summer for fear of my health and readiness to take on a lot of new. My partner is, well, yeah she's a generation older than I and will retire in less than a decade. We both (currently) make a living in para-sport. My step children both have OCD & Tourette's, and he's autistic. Pretty much unemployable but he's finished an undergrad degree which brings hope.
We have these conversations - how does my seizure disorder compare and contrast with her type I diabetes? What about the legacy of my athletic injuries and developing arthritis in context with her joints that are, simply, older? How do our complaints figure into our professional ones - I mean it's hard to complain about back pain due to stiffness when I remain hyper mobile and the athlete to my right is ataxic with moderate spasticity due to an ABI and the one on the left is kyphotic and has variable tone due to a tethered spinal cord.
In the end everyone's pai, discomfort and relative disability is personal. I think that's why it's so bothersome when others try to take on some small part of it - regardless of their intentions. You just can not walk nor wheel the proverbial mile regardless of the shoes.
That being said hierarchies of disability are totally a thing. It's amazing what a difference in public perception it makes when I sit at the front of the bus and I have the crutch because the nerve damage in my knee is really troublesome today versus when I'm there because I've had a partial complex seizure and just getting on the bus is (currently) the limit of my ability. For the former the seat is nice, for the latter it's pretty much required and at the same time I'm not likely able to advocate for myself.
As with many other axis upon which members of our societies exist along a spectrum the devil is in the details - it's all nuance. It's so damned hard not to over generalize, not to make assumptions based on our own personal experience. It's so damned hard not to confuse sympathy with empathy. It's so important; it's just so damned hard to do right.
posted by mce at 9:33 PM on August 19, 2016 [3 favorites]
I have the lovely pleasure of being fat while also invisibly disabled. My disability has nothing to do with my obesity, other than perhaps years of steroids has made it easier to gain weight. I not only see the side eye but hear the conversations the next row over at the grocery ("if she would get up and WALK maybe she wouldn't NEED that scooter). I have threatened numerous times to make a placard or t-shirt or something that says "Yes I am fat, but I am also disabled from something totally different." But then I think why am I going to so much trouble for rude people that shouldn't be judging me anyway.
posted by SweetTeaAndABiscuit at 10:00 PM on August 19, 2016 [9 favorites]
posted by SweetTeaAndABiscuit at 10:00 PM on August 19, 2016 [9 favorites]
By the way, I just want to make clear that in the story above:
I felt the former dancer was being an overprivileged jerk whose actions harmed other individuals
the point of the story is that I was wrong, and that it was I who was being the overprivileged jerk in this case.
And that there are layers of subtlety. Including many subtle reasons people may choose to be open, or not so open, about their disability. And many subtle ways in which they may do so.
posted by feral_goldfish at 10:47 PM on August 19, 2016 [3 favorites]
I felt the former dancer was being an overprivileged jerk whose actions harmed other individuals
the point of the story is that I was wrong, and that it was I who was being the overprivileged jerk in this case.
And that there are layers of subtlety. Including many subtle reasons people may choose to be open, or not so open, about their disability. And many subtle ways in which they may do so.
posted by feral_goldfish at 10:47 PM on August 19, 2016 [3 favorites]
Thanks for sharing, I really enjoyed this essay and her writing has a limpid style which made it a delight to read, and the concepts she was discussing very easy to understand.
posted by smoke at 4:16 AM on August 20, 2016
posted by smoke at 4:16 AM on August 20, 2016
It has taken me some time to learn how to be a better parent to my child who has a disability that most people have never heard of and that is only visible when he can't do certain kinds of motor tasks many people take for granted. I was not prepared at all because my notion of disability was so shallow. Writers like this one have been very helpful to me.
posted by emjaybee at 10:24 AM on August 20, 2016 [1 favorite]
posted by emjaybee at 10:24 AM on August 20, 2016 [1 favorite]
Hello. I am that former dancer and "famous lesbian" (lol! that feral_goldfish spoke of. Please note that I have just joined Metafilter to offer this response; I am not a regular reader or member of the community. My wife however is, and it is she who brought this description of me, and of the past events spoken of here, to my attention.
I remember these events well. When I was diagnosed with MS in 1993, the MS Society and the therapists I visited all counseled me not to be "out" about my diagnosis. My MS was invisible at the time. They counseled me to be very circumspect before I told anyone, because the discriminatory responses of others to such information might surprise me, especially on the job market. Such advice was very difficult for me to swallow, because I had always been "out" about my other potentially stigmatizing identity (lesbian). Back in the 80s and early 90s it was so to be gay or lesbian, though in my personal experience I no longer feel this so much now; this is great example of how cultural norms and attitudes can change, and indeed why the disability rights movement that Garland-Thomas writes of is so important in raising awareness of the ongoing discrimination people with disabilities (that huge, umbrella category) still face.
So to respond to feral_goldfish. I don't remember joking about it, but if joking is how my flustered response to being called out for using my disabled placard to park closer to the building where I attended grad school was read that way by feral_goldfish it would not surprise me; joking is a notoriously good – – though clearly also problematic – – cover, and has been used as such by so many comedians to counter discriminatory attacks that take the form of remarks about ethnic identity, religious affiliation, race, weight, physical ability, genderqueer identity, etc. Think Dick Gregory, Gilda Radner, Woody Allen, Joan Rivers (why oh why isn't she alive for this Trump moment!?), Roseanne Barr, etc. etc. I could not figure out any other way to respond to a voicemail left on my answering machine telling me that people with real disabilities needed that space and that I should not park there. If I told anyone, everyone would know, and I was not ready for that. The invisible phase of a disability like MS – – and I call it a phase because usually it is, unfortunately – – is so hard. Now that I am a full-time wheelchair user, I would say that it is more difficult (if you will believe this) to have an invisible disability than a visible disability. Of course they both have difficulties: the condescension and fear that greets one with a visible disability is not present with an invisible disability, while all of the assumptions that confront a person with an invisible disability – – feral_goldfish's post above is a case in point -- can be complicated and confusing.
I'm glad to see that my friend has added a clarification to her original post to make it clear that her assumptions, at the time that I was covering my diagnosis, were wrong. I don't think she was a complete jerk; I think she was just clueless about hidden disabilities, as are most people who are fortunate in being able-bodied, and young, as we both were then.
posted by tulippy at 12:50 PM on August 20, 2016 [21 favorites]
I remember these events well. When I was diagnosed with MS in 1993, the MS Society and the therapists I visited all counseled me not to be "out" about my diagnosis. My MS was invisible at the time. They counseled me to be very circumspect before I told anyone, because the discriminatory responses of others to such information might surprise me, especially on the job market. Such advice was very difficult for me to swallow, because I had always been "out" about my other potentially stigmatizing identity (lesbian). Back in the 80s and early 90s it was so to be gay or lesbian, though in my personal experience I no longer feel this so much now; this is great example of how cultural norms and attitudes can change, and indeed why the disability rights movement that Garland-Thomas writes of is so important in raising awareness of the ongoing discrimination people with disabilities (that huge, umbrella category) still face.
So to respond to feral_goldfish. I don't remember joking about it, but if joking is how my flustered response to being called out for using my disabled placard to park closer to the building where I attended grad school was read that way by feral_goldfish it would not surprise me; joking is a notoriously good – – though clearly also problematic – – cover, and has been used as such by so many comedians to counter discriminatory attacks that take the form of remarks about ethnic identity, religious affiliation, race, weight, physical ability, genderqueer identity, etc. Think Dick Gregory, Gilda Radner, Woody Allen, Joan Rivers (why oh why isn't she alive for this Trump moment!?), Roseanne Barr, etc. etc. I could not figure out any other way to respond to a voicemail left on my answering machine telling me that people with real disabilities needed that space and that I should not park there. If I told anyone, everyone would know, and I was not ready for that. The invisible phase of a disability like MS – – and I call it a phase because usually it is, unfortunately – – is so hard. Now that I am a full-time wheelchair user, I would say that it is more difficult (if you will believe this) to have an invisible disability than a visible disability. Of course they both have difficulties: the condescension and fear that greets one with a visible disability is not present with an invisible disability, while all of the assumptions that confront a person with an invisible disability – – feral_goldfish's post above is a case in point -- can be complicated and confusing.
I'm glad to see that my friend has added a clarification to her original post to make it clear that her assumptions, at the time that I was covering my diagnosis, were wrong. I don't think she was a complete jerk; I think she was just clueless about hidden disabilities, as are most people who are fortunate in being able-bodied, and young, as we both were then.
posted by tulippy at 12:50 PM on August 20, 2016 [21 favorites]
Tulippy, thanks for speaking up for yourself with so much grace, and clarifying. It all makes so much sense to me, as someone (as I mentioned upthread) currently on the "invisible" side of the line. This whole exchange put the "meta" in Metafilter, and it personally really helped me to see it completed with your own response, in your own voice.
(I also flagged it as a "fantastic comment," which is a thing here.)
posted by blue suede stockings at 1:57 PM on August 20, 2016 [1 favorite]
(I also flagged it as a "fantastic comment," which is a thing here.)
posted by blue suede stockings at 1:57 PM on August 20, 2016 [1 favorite]
Thanks so much for posting this, roomthreeseventeen. A lot of food for thought. I'm really looking forward to the rest of the series.
posted by rafaella gabriela sarsaparilla at 5:57 AM on August 21, 2016
posted by rafaella gabriela sarsaparilla at 5:57 AM on August 21, 2016
Oh my. Ahoy, tulippy!
I'd like to apologize for that incident, which I never have -- it took a long time for my cluelessness to hit me over the head. At which point your graceful circumspection made immediate and total sense.
Apologies also for weaving too many identifying strands into my comment: the bundle of multiple incidents and identities kept refracting and interacting, in ways that seemed so relevant to the conversation and to the larger contexts it should be set in, that I failed to govern myself. (Also, apparently, to draw out anything explicit that might have made the identifying inclusions a bit more worthwhile, although still problematic.) Let me know if I should contact the mods and ask them to take it down.
Glowing both with embarrassment and with warm pleasure at the shock of your presence here,
feral_goldfish
posted by feral_goldfish at 10:02 PM on August 21, 2016 [1 favorite]
I'd like to apologize for that incident, which I never have -- it took a long time for my cluelessness to hit me over the head. At which point your graceful circumspection made immediate and total sense.
Apologies also for weaving too many identifying strands into my comment: the bundle of multiple incidents and identities kept refracting and interacting, in ways that seemed so relevant to the conversation and to the larger contexts it should be set in, that I failed to govern myself. (Also, apparently, to draw out anything explicit that might have made the identifying inclusions a bit more worthwhile, although still problematic.) Let me know if I should contact the mods and ask them to take it down.
Glowing both with embarrassment and with warm pleasure at the shock of your presence here,
feral_goldfish
posted by feral_goldfish at 10:02 PM on August 21, 2016 [1 favorite]
Ahoy Matey! No need to contact the mods or take anything down. Everything is out and Visible in my life these days :-) , and this exchange will hopefully be edifying/useful for others Clearly we both learned a lot from it, as an eventuality that neither of us had encountered previously -- it stuck with us all these years!
posted by tulippy at 5:53 PM on August 22, 2016 [1 favorite]
posted by tulippy at 5:53 PM on August 22, 2016 [1 favorite]
Alright then -- thank you, as always, for the grace.
posted by feral_goldfish at 9:20 PM on August 22, 2016
posted by feral_goldfish at 9:20 PM on August 22, 2016
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I don't really have any great insight to offer into that difficulty, but this is a useful reminder that disability is a uniting factor, rather than one which divides us (I've heard it said that there are two kinds of people in the world: the disabled and the not yet disabled), and is food for thought. Thank you for posting.
posted by howfar at 10:48 AM on August 19, 2016 [30 favorites]