I pulled the keys out of the ignition and as BIg Ben my driving instructor rambled on about one thing or another, I started to cry. He noticed and got quiet. I hadn’t been behind the wheel for a month and this time, at my 18th lesson I couldn’t to find my bearings, my driving was erratic, my turns were choppy, it was as if I had forgotten everything from the previous six lessons. This time when I nearly drove off the road onto an embankment, I was able to make the correction but if any car had been near me, we would’ve been in trouble. Ben knew this and so did I but neither of us bothered to mention it.
Big Ben asked me the same questions he always puts forth when we’re back at Kessler sitting in the car. “How do you think you did? What worked and what didn’t? And the final kicker, “What’s holding you back?”
We’ve been puzzling over the that one almost from the beginning of this adventure. Is it fear? My CP or the CP related drugs I take? My hyper focus? My lack of focus? My response time? My delayed response time. After eighteen lessons I can safely say that neither Big Ben nor I have any fucking idea. For what ever the reason I am not progressing, or I mean, I have progressed, but, more accurately, I do not drive consistently. It’s driving me crazy. It feels as if I’m caught on a treadmill and I can’t make the machine stop, I’m trying desperately to find my balance even though I know I have no balance—If I could just catch up and hold on and keep going or stop.
I dried my tears, gave Big Ben the keys and told him I would be there the next day for another lesson.
I woke up in the middle of the night thinking: What’s holding you back, Katinka? The least I could do for myself is come up with an answer.
I know that CP, spastic cerebral palsy or how it manifests in my body means that it tightens my muscles, makes me move more slowly and affects my hand/eye coordination. It’s why I have can’t catch a baseball if my life depended on it, why, when I try to walk like a biped (one leg after another) I must take my time. It’s why when I make love I am not a speed demon. It’s also why I’m a good listener, because I naturally take the time to hear through the words, it’s why I write, it’s why I can have long, weirdly detailed, convoluted conversations with Ethan or anybody else for that matter.
So, in the middle of the night, with the porchlight from my neighbour’s house pouring through my bed room window I realized that NOTHING WAS HOLDING ME BACK. In fact, my cp body was doing what my body always does, move more slowly, and yes, react more slowly, improvise in whatever way it,—I— can to stay upright and keep moving.
The question really is why was I expecting this experience, learning to drive, to be different? Why was I insisting on measuring my progress by some able bodied standard that has never applied me to me in the first place? Everyone else can drive, many PWDs drive, so why can’t I? When my body wasn’t doing what it “Should” be able to do, I whined, I wondered, I cried. At this stage of my life I wasn’t expecting to have to relearn the lesson of Self Acceptance yet again. I thought I’d motored happily past that disability sign post a long time ago.
After my midnight ruminations, I resolved to go to sleep and make a decision about whether to continue or not in the morning.
I woke up without a definitive answer. Para-transit picked me and dropped my off in front of Out Patient Services at Kessler and I still didn’t know. I waited for Big Ben for two hours, I asked to speak to him, I followed him down the hall to his office and it wasn’t until I was sitting across from him that the words finally came out. Of course, I had to start crying again, but this time I gave him fair warning. —I told him that after 18 lessons, thousands of dollars, and many hours I thought it was time for me to stop. Full stop. I doubt my answer was actually that coherent but he got the gist.
I dried my tears, thanked Big Ben, called a cab and went home.
Having made this decision, I’ve been wandering around with a bit of that sad, foggy feeling. It’s what comes when you let go something you really wanted, a job, a relationship, an idea, something you’re certain was yours anyway. I had dreams attached to the idea of driving: to be able to tote Ethan around with much less hassle, to drive to a conventional, work- at- the- office job and it goes without saying, to escape to the city.
I know the fog will lift soon enough and I’ll find away, another way, to fill the the space where “YOU ARE THE CAR!” was living. Let’s be real: It’s a punch in the stomach, or to my ego to realize that even after all these years there’s a part of me that wanted to live just a little bit more in Biped World, wave at them, from the next lane behind my perfectly adjusted hand controls in my snazzy well appointed vehicle.
Do I believe that I can learn to drive?
Imagine me: I’m in a custom designed program that encourages me to take lessons every single day without fail for at least three months, a “Driving for Crips” boot camp if you will. For the first month I’m on a closed course with no distractions. Sitting next to me is an attractive, sensitive driving instructor who wants to know, he needs to know every detail about my body and he finds it all so fascinating and we’re driving and….
Katinka. Oh, Katinka. This post brought tears to my eyes. Because I’m the same way. I want to drive, I want to drive so, so badly, have that little piece of Biped World, want to prove to everyone that I can do it. I’ve been taking adaptive lessons for over a year now, and I want to do it, I want to do it so badly, but it’s hard to keep up with the lessons because I’m always away at school. My driving instructor thinks my anxiety is holding me back, that I need to learn to relax, but I have spastic CP and an anxiety disorder and relaxing isn’t in the cards and everyone thinks I shouldn’t learn how to drive, those two things aren’t good for driving, but I want to prove that I can do it. I’m determined to do it and if I don’t do it, I feel like a failure. I just want this. So. Badly. I’m proud of you for recognizing your limits and I understand that feeling of wanting your body to do what it “should” do and realizing that you need to go through that whole acceptance thing again. It’s like you’re talking about me in this post. And…oh god, I’m rambling, but there are few posts on the internet that have actually connected with me so much it hurts, but this is one of them and….thank you, Katinka.
This project is advancing beyond our wildest dreams. We are humbled and in awe of the enthusiastic support we’ve received. PLEASE keep sharing the project around so we can stay a featured campaign on indiegogo and keep generating awareness and momentum. As a reminder, we have a facebook page as well as a twitter account (right now we’re asking people to tweet us reasons why the project matters to them under the hashtag #loudhandsproject.) “Like” us, follow us, and keep spreading the word and sharing the link to this campaign around. We have scripts for that!
Julia Bascom, project organizer
I love the Loud Hands project! (And the Livin’ On A Prayer reference!) Please signal boost!
You know what sucks? The fact that most of the big name SJ bloggers on here can basically be as ableist as the like as long as they don’t start saying they tip people in wheelchairs over and nobody seems to give a shite. Especially if it’s mental health stuff. We’ve got popular bloggers denouncing everyone who uses a trigger warning for anything other than PTSD from quite specific types of abuse (No, nobody will care if you’re triggered by ableist slurs because you were abused as a kid because you’re autistic). Oh, and you have to be triggered in a very certain way as well. Otherwise you’re just ‘butthurt’. They lampoon all of us who put a [tw] in front of posts with common phobia photos like spiders (one of the most common phobias in the western world) or ableist language (as long as you don’t say ‘spaz’ or ‘retard’ nobody cares. And even then…) or even those of us who put rare triggers under a cut specifically because we know we have a follower that has that trigger. We’re told we’re ‘appropriating triggers’. And yet these same people, every time a [tw] discussion arises, will make pathetic jokes involved putting up a trigger warning for a cake (it’ll give you diabetes!) or a gun (puntastic!) or an ugly armchair or something. But you know, we’re the ones diluting the meaning of the [tw]. We’re simply too weak for the internet!
We get feminist communities calling anti-choicers anything from dump to stupid to crazy to ‘literally autistic’. Yes folks, I’ve seen that last one myself on a facebook pro-choice page that I was bullied out of after calling it out. We get people saying it’s totally cool to want to abort all potentially disabled kids ever. We get the standard hate against the ED community, some of whom do body shame, but all of whom get laughed at. We get practically every SJ’er out there picking on grammar and spelling mistakes, one of the reasons my partner wants to stay off tumblr, because he just knows his dyslexia is gonna get him thrown to the wolves. You seen the latest influx of ‘the problems with SJ’ posts? How many of them say that ‘ableist’ is being used as an insult now?
And the language, my god the language. They’ll often listen to almost everyone who says they’ve been hurt by words like bitch, whore, n*word, and sometimes if they’re feeling generous, they might chuck in the word retard. But if you ever say you’re triggered by the word stupid because of the way you were treated as an autistic person your whole life, if you dare mention that ‘crazy’ brings back vivid memories of how you’re viewed as a person with mental health issues… well, you get a nice healthy dose of ‘fuck off you’re too weak for the internet’.
Don’t get someone’s sarcasm because you’re autistic? Fuck you, get off the internet! Triggered by pregnancy? Fuck you, misogynist, get off the internet! Spelling mistakes? Have a sarky gif and be prepared to be called stupid!
And how about how ableism affects us in other ways? Don’t like perfume because it can make you have an asthma attack? So-called ‘bad’ hygeine habits because of your autism/mental health stuff? Need gifs tagged because you’re epileptic? Don’t always understand everything a store clerk says to you? Well, you’re a joke, you’re pathetic, and at least you don’t have a real problem like racism or cissexism! Those have body counts, unlike ableism!
And I think that last thought is my personal favorite (and by favorite, I mean rage-inducing shitpile) idea these people come out with. Somehow, they’ve erased centuries of the mentally ill, the developmentally disabled, and the physicically disabled being killed at birth, locked in attics and cages, used in sideshows (google the 1932 movie Freaks), abused in homes and schools and care facilities around the world to the very day. I mean Jesus, spend half an hour googling things like Aasylums and lobotomies and freakshows and the holocaust (yes, we were murdered in that, too)… Talk to people of my nanas age who were considered ‘retards’, given nicknames like ‘Susan Sawdust’ (as in sawdust for brains) by her TEACHER, beaten, treated worse than the family pet… hell, spent half a minute on the damn autism tag and see how many ‘I want to hit my autistic sibling’ posts appear. Look in the news and see how many disabled kids are killed by their parents and carers each year and how much sympathy their killers get because we’re just fucking burdens. Talk to any of us who’ve gone through the public school system as a kid with a disability. Google Kerry McDougall, the UK woman who had to fight to keep her children because she was considered ‘too dumb’ for a baby.
I actually find it worse from these pillars of our SJ community than from folks outside the SJ realm. When someone’s already willing to be sexist, racist, or otherwise a d-bag, at least they’re being consistent. But when people are held up by both their fans and themselves as beacons of justice and yet they pull this shit? It’s vile.
Just ask yourself this: If some guy on the internet said something not overtly violent towards women and just posted say, a rant that called his ex-gf a bitch or a whore or something, a lot of folk would call him out. If his friends then jumped in and said ‘oh hey, stfu, he’s a really nice guy he didn’t mean it like that’, people would get provoked. But when one of these darlings of the SJ world says something subtly or even overwhelmingly ableist, be it simple mistake or deliberate assholatry, other SJ people seem more than content to pull the ‘yeah, but I’ve followed them for ages and I like them so stop being sensitive!!’ shit and for the most part, people just sit back and let them get on with it.
So yeah, maybe I’m weak because I can’t deal with ableist language. Maybe I’m pathetic because writing this post has seriously f’d with my head. Maybe I’m just a ‘special snowflake’ and an ‘attention seeker’ (and I’m not even gonna go into the ableist history of those two terms) because I don’t like it when people belittle my disabilties and use them as a joke an an insult. But fuck it, I’m strong enough to tell you all to take your passive-aggressive little ‘trigger warning oops it was gun!’ joke posts and go lick a rusty nail.
(And bonus points if you can guess how many people respond to this with ‘it’s totally anus-ist to use asshole as an inuslt, or other such gems)
I’m delighted to be hosting the seventy-ninth Disability Blog Carnival. I chose the theme of Occupy (as in Occupy Wall Street/#ows) for this edition. I have to say that I’m proud of this post. It makes it abundantly clear what we have to teach each other and ourselves, and what we have to learn.
I posed a lot of questions for people to respond to for this carnival. However, the majority of the posts in this edition were written before my call for entries, indicating that Occupy is on the minds of many who blog about disability already. […]
I’m in twice!
Rocking (and Flapping) at a 1000 Revolutions a Minute is definitely one of my favorite posts on disability and Occupy. It is a must read! This incredibly powerful, liberating post by Savannah Logsdon-Breakstone of Cracked Mirror in Shalott includes a captioned video Savannah took of herself at an Occupy DC event, off by herself, rocking, and how doing that contradicts the harmful messages she’s been subject to based on others’ responses to her autism:
The week before I sat in the park and rocked, feeling my defiance, I spent several nights wishing I didn’t exist. I knew all the things I talk about here intellectually, but that base part of me is still filled with the remembered abuse of my past. The most prevalent are those that were excused at the time as treatment while speaking words describing me as a burden and my being as a barrier.
In her post, Decolonizing Our Voices, Savannah Logsdon-Breakstone of Cracked Mirror in Shalott describes the parallels she sees between the 99 percent movement and her activism against oppression of people with autism. In fact, she published this post on Autistics Speaking Day, an annual event to counteract the messages of pity and misinformation coming from certain autism organizations (which are run by people without autism).
After some thought, I’ve decided that there’s too much of a cross over for me in the work of Decolonizing Wall Street and of our voices as Autistics to not write this post today. While people in general are seeing their demands of their political representatives co-opted or diverted by corporations, Autistics routinely have our voices co-opted by our allies and diverted by large ‘non’-profits such as Autism Speaks.
I posted about how Autistics prefer not to do person first in the comments but the blog owner hasn’t corrected or un-moderated it yet? But I expect that they will, as I know them from Occupy at Home stuff.
I didn’t have time to contribute to this one :( I’m falling off the DBC bandwagon…..
I’m loving the Lasher Sport stuff, that looks epic :) When you meet another wheelchair user, don’t you check out their ride? I do, and I’ve seen others checking out mine. (Even in a hospital, someone asking a nurse why they can’t have one like mine)
I do actually, some people’s ride are just awesome. My AB friends would tell me it’s rude to stare and I’d tell ‘em to shut up. lol. When I see others staring at mine, I usually say some smart ass comment like “So I saw you staring at my ass…” or something lol.
I’ve made quite a few amount of friends in the years from just saying that line LOL.
I don’t know what height you’ve got your chair set at, but I spend most of my day when I’m out and about staring at other people’s asses … not that it’s a bad thing always ;)
That, and children’s head height.
Actually there was a child I saw on the way out of the cinema today, she obviously wanted to stop and talk to me, and look at me and the wheelchair, but her mother pulled her away and out of the door. Yes, ok, rude to stare; sure, but I met her gaze and she didn’t look away. She’s young, and that seems like teaching her not to approach a wheelchair user?
I always check out another wheelchair user’s ride. And then I feel bad for staring but I’m not staring for the usual reasons! LOL
“We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by the list of our collective symptoms but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning.”—
7. Really didn’t think it would be that low, and now I feel strange. I need to retake that one later and see if the scores are similar.
It’s Simon Baron-Cohen’s test. He defines empathy in a ridiculous way that has nothing to do with popular ideas of what empathy means, and then equivocates on the word empathy. According to Simon Baron-Cohen, as a borderline person and an autistic person, I have zero empathy and am thus a bad person.
Simon Baron-Cohen, you keep using this word “empathy” …
I wrote about this a while back; I’ll go dig up his definition. But basically it’s been gerrymandered to exclude autistic people (because we do not have “appropriate” emotional responses) and has more in common with how people use “social skills” as a term then “empathy”.
Or, you know, “acting allistic” (which, okay most people don’t use as a term. :P But you know what I mean.)
“Empathy is our ability to identify what someone else is thinking or feeling and to respond to their thoughts and feelings with an appropriate emotion”
Which is actually, you know, two seperate things, one of which is basically social skills and has nothing at all to do with empathy, and the other isn’t actually how most people would define empathy, though it’s closer. (I’d describe empathy more as “feeling what other people are feeling/what you think other people are feeling”
‘cause like, most people don’t consider it “appropriate” to freak out and be like “oh my god sorry empathy overload, I need to go for a walk, bye” when someone talks about their family being abusive. (Well I didn’t leave quite that abruptly in the time I was thinking of but still.)
But like obviously that’s related to feeling what the other person is feeling (or what you think they are, because, obviously, I don’t know for sure what the person was feeling). Like it was painful, so I got away from the source of the pain.
But since it’s not an “appropriate” reaction its not empathy according to SBC.
Seriously, what do some of these questions have to do with empathy??
Also tracking issues ugh can’t figure out which question I’m answering
Update: I got a 56. :D Although I think trying to track the questions/answers with my eyes depleted me of spoons…
Be sure to include words such as ‘inspiring’, ‘courageous’, or ‘tragic’ throughout the passage. When lacking a sufficient adjective to describe the individual, simply deposit any one of these words or equivalent synonyms. In your text, be sure to treat cripples at large as a homogeneous group, and make references and comparisons to media-popularized cripples such as Christopher Reeve. Whether or not such a reference is in any way applicable to the subject is irrelevant.
There are two routes you can embark on when writing about cripples. The Tragic Defeated Cripple, or the Prevailing Heroic Cripple. The Angry Cripple is a common subcategory of the Tragic Cripple. The Angry Cripple must hate the outside world fervently, and their animosity must be attributed to their disability. This person’s anger must be a response to their own pathetic state, not a response to the marginalizing treatment they have experienced. You must then either directly or indirectly state that such a person has a right to be angry, and you wouldn’t expect anything else because they are Tragic and broken.
If the subject has endured any mistreatment from family, ignore it. Family and friends must be portrayed as completely supportive and loving. You should speak in-depth with these people about their cripple, and how exhausting and challenging it is to accommodate this person. You should let the views of family and friends dominate your piece, because while you respect the cripple as an inspirational subject, they are probably over-emotional and biased.
Relate back to your own life experiences, and how this poor crippled soul has impacted your life. Using diction loaded with connotations of “Inspired” is critical at this point. Don’t go into too much depth about the specific facets of this person’s character, but instead make generalized commentary about their life struggle. Do not observe any accomplishments this person has made that are not somehow related to their disability, or if you do, link it back to their disability anyway. Make sure that your audience grasps that you understand what this person is going through, and establish impeccable sympathy without too much actual involvement.
If the person you are writing about is not trying to ‘overcome’ or find a treatment for their condition, something is inherently wrong with them. You should infer that it is Tragic and disappointing that this person has given up, and they could accomplish so much more if they Just Tried.
The whole “Just Tried Harder” comes from everywhere, but the meme seems to start with the medical profession, and get copied everywhere by the media.
This is not the inspiring crip you’re looking for.
The last time cripples on public transport came up (the part about a bus, and those damn slow wheelchair people!) my friend had an excellent suggestion of what these people should do if they are bothered by cripples on public transport.
You have legs that work. Walk.
Too far? Well the argument I always hear from healthy people when I can’t do something is “x person with your illness/disability can do it!” so obviously you being not disabled are totally capable of running 20 miles to work every morning. So you should totally do that or you are lazy like we apparently are.
Wanting to spread this more.
I’m going to be using a train in a wheelchair for the first time soon. Should be an interesting experience, having been able to avoid them for so long.
At least busses and trains mean you get to stay in your wheelchair and thus retain whatever degree of independence you already had. The one thing that is making me nervous is planes. Being without a chair for such a long period, combined with having to rely on other people, likely strangers, for everything for so long.
I realise that there are many people who already have to rely on others for everything, far more than I do or even ever have, that doesn’t make it any less daunting. I know there are wheelchair users who fly regularly, how do others cope?
I’ve wanted to experiment with going on a train with my scooter, but I’m too nervous to actually do it….it’s “easier” in one respect to bring the crutches, but then when I get to the place I’m going and have to walk all over creation….well, that’s “harder”. Gahh my body is just so much fun!
Seriously if I see another show use the plot twist, but now they can walk/talk/see again. Without explaining why except that it’s a miracle plot twist I will be extremely disappointed.
Not only is that an old and extremely contrived plot twist, it’s boring.
It’s so much more interesting to have a character with a disability become interesting and strong despite their problems. You know just like any other character.
I am so sick of seeing wheelchair users suddenly get up and walk without any explanation. You’d think it’d be important enough for explanation but nope. It just happened.
I mean at least Fullmetal Alchemist showed that Rose being mute was caused by trauma, could of been better and did irritate me a little but Fullmetal Alchemist still handles disabilities better than most fiction out there because it actually addresses them and the issues that come with it without implying everyone needs to be cured of them.
It always amazes me how people, usually those without any impairments at all, feel entitled to ask this and pry into your life. Does anyone else find that the answer “I can’t walk” (or “I can’t walk far” or “I can’t walk without pain”) is deemed to be insufficient by the nosy person?
Why does anyone feel they have the right to know this?
What bugs me even more than this is the number of people who tell me that I could walk if I only I tried, or if I tried harder, and I shouldn’t give up. Then they tell me some supposedly inspiring story about some friend of theirs who lost a leg, usually in a warzone, and that they never gave up on walking and so neither should I. Thanks, now that makes me feel like I’m useless too, wonderful. How do they know I can walk again? Have they stopped to think about how much it hurts? How exhausting it is?
Why are they so bothered about whether I walk or not? Why is using a wheelchair seen as “giving up” anyway? Actually, what gives them the right to demand that I put myself in pain or risk injuring myself anyway?
Answer with an equally irrelevant question:
Why are you wearing shoes?
Why are you wearing glasses?
Why do you drive a car?
Why do you have a raincoat?
Or you could opt to completey deny it:
I don’t have any idea what you’re talking about.
The wheelchair is a paradox.
I get the “You can walk (more) if you only tried harder.” and variations on it from other disabled people as well…..
“When you believe that a group of people intrinsically have value equal to your own, you believe it all the time and deep in your heart. This belief is not contingent on your being in a good mood. The belief doesn’t go away when a marginalized person makes you angry or annoys you. If you have it in you to use epithets when hurt, then you have it in you all the time.”—
You know what the most disturbing, terrifying part of all these abuse cases is? It’s not that they’re happening in the first place, although that’s certainly disturbing enough. It’s that these acts are passed off as being okay. When this mother came to pick up her son and found him in a duffel bag, an aide was “standing by”. The school told her it was a form of therapy. And they “told her it was not the first time they had put him in the bag”.
Just casually - “and oh yeah, we put your son in a bag where he could’ve suffocated for THERAPY”.
This is by far not the first case like this, and I shudder to think of how many more abuses are committed under the guise of therapy around the world. Committed in the name of rehabilitation, in the name of making us magically stop being different and making us normal. Does the world really hate us, fear us and our differentness that much, that kids’ emotional and physical well-being would be sacrificed in the name of normality? The answer seems to be yes.
There seems to be this prevailing attitude that disabled students - and especially those who receive segregated services like segregated transportation, therapy, etc. - are some sort of subspecies that are exempt from deserving respect. Therefore school staff and others that work with the students can screw them over however the hell they want. They’re just bodies, vegetables. They don’t need to know if they’re going to have the same aide or bus driver from day to day. They don’t need to get to school on time. They don’t need or deserve to be in class, because after all, it’s not like they’re actually learning anything. They don’t need or deserve to have an aide who does their job, without abusing the student or making the student feel like a burden. And these students certainly don’t deserve an apology when someone wrongs them. I’ve seen this attitude in practice myself countless times, and it can lead to incompetence, neglect, and outright emotional and physical abuse.
Unless we stop this ableist attitude in its tracks, unless we embrace the radical notion that people with disabilities are - *gasp* - people, human beings, just as worthy of equality and respect as anyone else, this awful abuse is going to continue. It’s going to continue, because society makes us believe that if you’re not perfect, you’re not anything. You’re nothing. And since you’re nothing, people can do whatever the hell they want to you and get away with it. How many more kids have to be traumatized, how many more kids have to be hurt, how many more kids have to die before this becomes unacceptable? Before no one gets away with these acts, or better yet, does them at all. Before the world is as outraged as we as activists, advocates, disabled people are. Before parents can send their children to school - all their children to school - and know that each and every one of them is being treated with equality, dignity and respect. Before no child is afraid of going to school. I hope, for my sake, for the sakes of all the disabled children who came before me and all who will come after, that that day is within our reach.
“Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)”—
Bullying is a pervasive problem that knows no social, racial, or economic boundaries and takes many forms.
It is just as likely to occur on the job as on the playground.
Today, we invite you to share your story: let’s kick bullying to the curb.
I’ve had to deal with people on the street laughing at me as I go past. I’m told I shouldn’t react to that. I’ve had people driving past me slow down and shout abuse out the window to me.
And the response I’ve had is “yeah, it happens.”
I’ve thanked a careworker for a suggestion, but said it wouldn’t work for me because of my wheelchair. And then had to deal with her complaint that she’d “never met a more argumentative bossy, ungrateful little madam” as a result.
I’ve had complete strangers stop me in the supermarket to ask why my legs were in plaster. And then when I joked “it’s a fashion statement,” I had to deal with their looks of disapproval for daring to joke about something like that.
I’ve ignored people asking rude questions and wheeled away. And then been told I have an attitude problem.
I’ve been described as “the girl in the wheelchair” more times than I can count. And then when I say “I am so much more than that,” they never understand. Yet if I described someone as the “fat bloke,” it would be totally unacceptable
Warning: This is going to be a long, probably discombobulated post in which I word vomit a lot of thoughts I have on “visible” vs. “invisible” disabilities.
There’s been a lot of talk ‘round the disability community lately about “visible” vs. “invisible” disabilities. From the way some people talk, you’d think you could take a big fat Sharpie marker and draw a thick black line separating those with “visible” disabilities from those with “invisible” disabilities.
The issue of “visible” vs. “invisible” disabilities is kind of like the issue of “high functioning” vs. “low functioning”. What label gets placed on you depends on who is doing the labeling and what situation you’re in.
Take me. Depending on the day, time, situation, and any combination of factors, I a) walk without aids at all, b) walk with forearm crutches or c) use a wheelchair or motorized scooter. So does that mean I bounce back and forth throughout the day, going from visible to invisible and back to visible? If I’m walking without aids, but no one sees me, does that still mean I’m “invisibly” disabled? (And while we’re on the topic of existential questions, if a tree falls in the forest and no one is around to hear it, does it make a sound?)
What about someone with epilepsy? Most of the time, they may look perfectly “normal” and thus be “invisibly” disabled. But when they’re having a seizure, especially if it’s a grand mal, that’s sure as hell visible. Or someone with mental health impairments and self harm issues? Persimmon Blackbridge, in the documentary, Shameless: The Art of Disability, sums this up as she rolls back her sleeves to expose webs of scars from years of self injury:
That’s the thing about invisible disabilities - wear a long sleeve shirt, you’re fine.
When Persimmon is wearing a long sleeved shirt, she’s “invisibly” disabled, but as soon as the scars come out, that’s not invisible anymore. This phenomenon of “invisible” disabilities is such a fluid concept that it’s impossible to pin down who, exactly, qualifies as “invisibly” disabled, just as it’s impossible to pin down who, exactly, is disabled in the first place.
And even if there are people who can be neatly categorized into “visibly” and “invisibly” disabled, what does that accomplish, besides dividing the disability community even more than it’s already divided? Just because I use mobility aids doesn’t mean you know anything about my disability or how it affects me. And it doesn’t mean you have a clue about how to accommodate me, either. And it shouldn’t. You know what the best way to figure out how to accommodate me is? Ask me. You know what the best way to figure out how to accommodate someone who doesn’t show any outward signs of disability is? Ask them. There’s no difference in the way you should treat someone.
And neither group has it “easier”, either. I’ve experienced it from both sides, both with my physical disability (and it’s resulting oddities in my body) and my mental health impairments. If you’re more “out there” and visibly disabled, you get outright pity and ableist comments. If you’re less visibly disabled, and need or choose to disclose your disability, you’re accused of “faking it”, or get similarly skeptical reactions, and you STILL get pity and ableist comments once people find out. Society pushes and indoctrinates people to “normalize” themselves and invisibilize their disabilities as much as possible, and then when they’ve expended time and energy and emotions jamming themselves as much into that “normal” mold as much as they can, they’re accused of being fakers and benefit scroungers. It’s not “better” to be one or the other, if such defined categories even exist. It’s a different experience - just like all experiences of disability are unique. People with the same/similar impairments may relate to each other, and there is often a nice tribe-like feeling when you’re with people who have the same impairment as you, but it’s still a very individual experience.
In conclusion: The categories of “visible” and “invisible” disabilities are murky, at best, and only serve to further divide a very diverse and divided community. So let’s all stop meebling about how hard it is to be visibly/invisibly disabled and how the other group has it so much easier, ok? Because it sucks to be visibly disabled sometimes, and it sucks to be invisibly disabled sometimes. And it can also be MIND-BLOWINGLY AWESOME to be visibly disabled, and it can also be mind-blowingly awesome to be invisibly disabled. They are both equal parts suckishness and awesomeness, just like any disability.
“I’ve had physical challenges and some emotional ones as a result of my CP, but I was born with this condition and so it’s been part of me since I’ve been here on Earth and I’ve never heard of anyone having to overcome themselves.”—Zach Anner
Removing ableism isn’t about changing lots and lots of words around. It’s not about creating the ultimate ideology and shoving it down people’s throats until your “anti-ableist” crap starts twisting around to result in damage or death to actual disabled people. It’s not about creating new “models” of disability, even if those are sometimes helpful on a really simplistic level.
It’s about really and truly and fully valuing us as equals within the human race, and going from there. And believe me truly getting what that entails is a lifelong process. Because if people saw us as equals already then most of what we believe and do, not just about disabled people but about all people, would be changed on levels that few of us can even begin to imagine.
And it can’t just be segmented off into doing this for one group of people, because how societies treat disabled people are tangled up in knots with how we treat all other people, oppressed or not, and because disabled people also face oppression in other areas. Most people seem to veer off from this part into memorizing a bunch of “social justice” ideologies and jargon for each oppressed group. Please don’t. Ideologies will never solve oppression, they just twist it into new forms.
yeah, i’m about done with a disability culture in which people who have very different disabilities condescend to me how i need to have more “imagination” in how i see my own disabilities and how my own needs have to be subsumed under an umbrella that is failing me and a lot of other people. i deleted my initial reply to the post but i’m just feeling more and more pissed off the more i think about it.
Truth. A lot of disability spaces are very single issue and lack nuance. But I’m rather critical of equality language. Right, you can’t segment disability activism from other issues, but I think we should be careful not to rely on assimilationist, monolithic narratives of “the human race.” We don’t need to deny our powerful differences in order to address the ways in which some groups are failing us.
It’s a very weird and surreal experience to read something and be thinking “Yeah that’s right, yeah that’s right… whoa. You mean that was meant in disagreement to me? Wow that’s weird, because I agree with most of it.”
I’m starting to guess my words must have been similar to the words of people whose opinions ranged from different to mine, to the total opposite to mine. And were then taken to mean the same thing as all these other people’s words (possibly in a “last straw” situation). Because I can’t make sense of it otherwise. I mean I don’t expect agreement from everyone, but I know something’s wrong when I agree with someone’s words but their words are phrased in terms of disagreement with mine.
So some responses to different pieces of this.
I am not part of a disability culture, let alone one that believes in doing the things described. I have been incredibly alienated by pretty much every variant on disability culture that I’ve ever encountered, and my writing isn’t meant to be an addition onto someone else’s culture, disability or otherwise.
When I talk about equality, I’m talking about all people having equal value. Not at all anything remotely about being the same, forcing everyone to smush themselves into one dominant culture, or any of that crap. I’m not part of that culture myself and have no wish to be, and think our differences cultural and otherwise are incredibly important. I tried to convey that but seem to have failed. I’m not “relying on assimilationist narratives”, I’m a writer with serious language limitations (invisible in my better writing but very much there, just not in the places people normally look for them — see this post for more details) trying to convey stuff that’s inherently impossible even for people with better language skills to convey in language. I think that one was the only part that actively pisses me off. Not that I think it’s at all intentional (and probably couldn’t have been avoided) but still an infuriating situation. This is something where I had two choices — use the exact words I used or no words at all. To convey something so utterly and completely different from “denying our powerful differences” you can’t even imagine. And I chose to use the words I had because I thought what was behind them was that important and then someone thinks I said that horrible idea because I used words like “equality”. (See, again, what I linked to above. Really. Because this is why I originally wrote it.) Gives me very little hope of ever communicating certain things. Ever.
(In fact my language problems are a double edged sword, they allow me to see outside of language better than most people but simultaneously make my chances of using language to point at it successfully much lower.)
I never meant that any particular person’s needs had to be subsumed under any particular umbrella. Some of the things that I’m writing about, I’ve literally never in my life seen anyone write about. So they are also not meant to be some kind of addons to mainstream “disability culture” (or any other) including whatever umbrella they like to put people under, because I don’t think that would work out well for anyone involved.
When it comes to imagination, it’s complicated.
In some areas I think we all lack sufficient imagination to predict certain things and would argue with anyone who thinks otherwise. If you think you can absolutely predict how things will play out in a less ableist society then I disagree because I think nobody has that ability.
In other areas I’m talking about specific kinds of lapses in imagination. And there — I am really, very sorry that I made it sound like you don’t know your own limitations. I was sloppy and unclear: I was trying to reference a lot of specific people I’ve had specific, detailed conversations with over the years, none of who had thought past a really simplistic idea of what ableism meant and what removing it meant. Many of them did have impairments similar to mine, and were actively surprised to think of other angles than the standard “remove obvious barriers” thing.
(Although — we don’t know each other. People have to know me very well before they get a full picture of what impairments I do and don’t have, past and present. I don’t (and, language-wise, couldn’t if I wanted) discuss all of them all of the time, so, not knowing each other, I don’t see how either of us could know what ones the other had. The most you could know is that yours are unlike ones I’ve specifically discussed in your presence.)
Again, I’m really sorry I conveyed that you just hadn’t imagined enough or something. I didn’t think to explicitly limit things to people I’d had conversations with about these issues.
Also a couple dynamics that affect my writing a LOT so I’m including them in case they make other things more obvious:
1. I don’t know and can’t predict what my readers can be expected to know. This can result in both too much and not enough information. Too much looks condescending. Too little looks confusing (and may also look condescending depending on what’s being left out).
This article was really important for me in understanding myself and I know I have a lot of followers with BPD so it might be useful for you too.
Full article is linked at the bottom. I cut & pasted some especially pertinent parts. There is some ableist language and a lot of detailed exploration of abuse (and of course, invalidation) and references to self injury so proceed with caution.
Invalidation is to reject, ignore, mock, tease, judge, or diminish someone’s feelings. It is an attempt to control how they feel and for how long they feel it.
Invalidation goes beyond mere rejection by implying not only that our feelings are disapproved of, but that we are fundamentally abnormal. This implies that there is something wrong with us because we aren’t like everyone else; we are strange; we are different; we are weird.
None of this feels good, and all of it damages us. The more different from the mass norm a person is, for example, more intelligent or more sensitive, the more he is likely to be invalidated. When we are invalidated by having our feelings repudiated, we are attacked at the deepest level possible, since our feelings are the innermost expression of our individual identities.
Psychological invalidation is one of the most lethal forms of emotional abuse. It kills confidence, creativity and individuality.
Telling a person she shouldn’t feel the way she does feel is akin to telling water it shouldn’t be wet, grass it shouldn’t be green, or rocks they shouldn’t be hard. Each person’s feelings are real. Whether we like or understand someone’s feelings, they are still real. Rejecting feelings is rejecting reality; it is to fight nature and may be called a crime against nature, “psychological murder”, or “soul murder.” Considering that trying to fight feelings, rather than accept them, is trying to fight all of nature, you can see why it is so frustrating, draining and futile.
We regularly invalidate others because we ourselves were, and are often invalidated, so it has become habitual. Below are a few of the many ways we are invalidated:
We are told we shouldn’t feel the way we feel
We are dictated not to feel the way we feel
We are told we are too sensitive, too “dramatic”
We are ignored
We are judged
We are led to believe there is something wrong with us for feeling how we feel
Some of the stuff I hear from self righteous “social justice” activists on disabilities just makes me angry. Yeah giving your child surgery to help give them the best chance in life is apparently inherently ableist and wrong. Okay so if you said that to my parents for all the stuff they forced me through which helped me I would probably punch you in the face. Pretty sure these people are not disabled either. Just self righteous able bodied morons who think watching a few seconds of video on some disabled people makes them an expert on the subject. Just shut up.
I get you have an issue on the idea of consent but it’s more complicated then: No child should get surgery to improve their quality of life. Educate them on the possible issues of surgery and the idea of giving choice and consent. Don’t shame them for making what they thought was the best choice for them and their child.
Don’t you dare shame parents who want what they believe is best for their child. That’s horrible. It’s difficult enough for them to deal with the situation without you shaming them for it.
YESSSSSSSSSSSSSSS!!!!!!!!!!!!!!!! And, y’know, if a kid wants a surgery that will be strictly for cosmetic benefit, then let them have it. The doctors wanted to do a surgery to straighten out my feet a couple years ago. I said no because it was strictly cosmetic and that’s not how I roll (pun intended). But other kids might feel differently. Whatever. It’s not your concern, unless you’re the kid’s parents. And if you are, help the kid in making their own decision.
In general, with rare exceptions, people with disabilities do not get asked if they want to have children. They don’t get asked if they want to be sexual. The silence around sexuality includes their parents, their counselors, their teachers and most health professionals. Yet these same people sometimes counsel in favor of involuntary sterilization. If we do have a child we get asked if is it ours, “Who is the parent?” “Where is the parent?” or “Why are you holding it?” In response to this last question Trish Day, a mom with cerebral palsy created a t-shirt with the silhouette of a mom in a wheelchair holding a child that reads “Because I’m the Mommy.” When I (Tanis) arrived back from Jamaica with my daughter, I had people questioning my sanity as well as my maternity. They told me I would regret doing it as a single mother and doing it while I was so young. Raising my daughter, Ann-Marie, has convinced me that, when in doubt, answer your own question. Do you want to have a child? If you do—then you do. Not even the current level of knowledge about causation of disability prevents people from assuming that all forms of disability will be transmitted genetically. And even the small percentage of genetically transmitted disabilities are assumed to be so horrible that no one could possibly consider having children if there is a chance to have a child with this disability. Or as Mitch Letch, a disability consultant from Australia says bluntly, “There is a fear we’ll breed monsters” (1). When he asked the rehabilitation nurse about his options for post-injury fatherhood, she responded: “You filthy little guttersnipe. If you keep your mind above your navel you might get somewhere in life” (Mascall, 2001).
…was I your patient at one point, by some odd coincidence?
There is precious little that supports disabled people’s sexuality much less parenting (3,4,5). It doesn’t matter where you live, the stereotypes are alive and well. Nora Groce (1997) found that the lack of a societal expectation of parenting had wide-ranging international implications:
One reason why many disabled girls and women are rarely educated is because their families or societies do not see a need for their education. There is often little expectation that a girl with a disability will live independently or will marry and establish a household of her own. As one often does not become a full adult in the eyes of the community until marriage, lack of marriage keeps many disabled females forever in the status of dependent child. (This does not mean that many girls and women with disability do not establish relationships, become sexually active or bear children, only that their activity is often not acknowledged by the societies in which they live.) (6, p. 3)
None of the folks that we interviewed received any positive coaching about parenting—much less adopting a disabled child. In fact, everyone had experienced the typical response: “Are you crazy? Do you have any idea of what you are trying to do? It’s hard enough for normal/nondisabled people to do it… .” When they got stubborn and insisted that they were pursuing it, then the messages became more explicit, “Disabled children are a lot of work. No one expects you to take on this problem. We won’t be there to help you when it all falls apart.” Or as a Japanese man said to Corbett during her first week with Meecha, “Why would you want to adopt a tragedy?”
In attempt to disprove the unhealthy assumptions of asshats people like you, perhaps?
Melinda Morrisset (1999) suggests: “Developing a tolerance for ambiguity and “not knowing” is fundamental to learning, to problem solving, to any form of meaningful creation whether you are disabled or not. I know I’m more inclined to experiment and take risks in all aspects of my life since I became disabled; it’s a benefit of realizing that control is an illusion. Part of what disability has done for me (when it hasn’t been cast as defect) is to resurrect improvisational skills I used in theater and in play when I was younger” (11, p.
Being able to live with what comes, adapt to what happens and to accommodate a wide range of possibilities is part of being disabled but is essential to being a parent. Being a parent of disabled children then reinforces how unexpected life can be and how much the “living in the moment” means to us all. When disabled people choose to adopt disabled children, they are offering what they perceive to be the best gift a child can have: a parent who will love
them in their wholeness. Not being required to, as one woman said, “leave a part of ourselves at the door” (Axtell, 1999). A parent (or 2 or more) who will acknowledge all parts of themselves, help them navigate a world that is always insensitive and frequently hostile, who will give them strategies for survival
and strategies for having a joyful life. Or as Vicki D’aoust and Corbett (2000) wrote: “their family lives may in
fact be acts of resistance to what are constraining social expectations.” Is it easy being a disabled parent with a disabled child? Not always. There is too much to do and not enough time to do it in. Plus the responsibilities are
multiplied—parenting plus disability plus advocacy for disabled children (13,14,15). Tanis Doe called it disability squared in her presentation of disability dialectics (16)
We know where to get support because we created it. We are our own support system. As two mothers who both have adopted disabled girls internationally and inter-racially we have a lot in common. The disability community
has a lot to offer us as parents because it is full of creative people who spend their lives proving others wrong. These are the resources we bring to parenting
our daughters. And our children learn this resilience from us and integrate it into their own situations.
Before we can believe that we could be parents, we need to believe that we are sexual. When you’re walking around the world with a kid attached to you, most people are going to think that you had sex. Depending on your race
and your child’s race, people may make all kinds of assumptions about who you had sex with.
One parent said because they had a sex life, they believed that it was a powerful role model to their child about disabled people being sexual.
“I think that’s true—the example we set. [My child] witnessed the relationship I had and was friends with the guy. My conflicted feelings on morality of sex are more conflicted now as a parent, because of wanting to set an example of what I really believe, and not being a hypocrite i.e., marriage (or formalized partnership if GBL) is best, long term serious committed relationships are ok, and short term non- committal relationships are not good.” (18)
Sara Axtell (1999) found that disabled lesbians felt that being disabled strengthened their relationships in a number of ways: increased sense of independence, appreciating the time they have together, gave them shared challenges, and deepened their commitment to each other (8). This resonates with disabled parents. Many of us really appreciate the incredible gift that our children are to us, know that this interfamilial transmission of disability culture is a rare gift, know that we are lucky to be parents at
all, and are fiercely protective of our families.
Far too often children with disabilities are categorized as either tragedies or at best, an unexpected difference.