Imagine waking up and realizing that your right hand looks, moves, and feels completely unlike your left hand. You stand up and walk over to your dresser and notice you are limping, but decide to ignore it and get ready for your day. As you lift the shirt you’ve chosen to wear and pull it over your head, your right arm suddenly stiffens, and it takes an additional two minutes to get your arm through the armhole. Once you’re dressed, you figure that the worst is over — until you go to tie your shoes. Your fingers on your right hand cannot grip the shoestring long enough for your left to do most of the work. Later, you leave to meet a friend for lunch, but when you step outside you notice that people you don’t know are staring at you, wide-eyed and open-mouthed. You try your best to avoid their gazes as you enter the restaurant. Your knees begin to buckle, and you know you’re going to fall.
All of this, which might sound unfamiliar to you, is my everyday reality. Strangers who see me often let their curiosity get the best of them. They watch me walk down hallways and up store aisles, their eyes on me, expecting an explanation. I could tell them about my cerebral palsy, explain that this is a disability I was born with, but there is never enough time to say the things I wish to.
No, I’m fine, I really don’t need your help.
I don’t know the exact type and name of the cerebral palsy I have.
No, you don’t need to speak to me slowly. I understand you just fine.
Sometimes I feel guilty, cowering under beady eyes. I feel guilty for the desperate way in which I do desire to explain myself to complete strangers, and then I remember that I shouldn’t have to.
Growing up I didn’t have access or exposure to people like me. There was no one with a disability acting on television, no songs I could listen to or books I could read that might have reflected my life back to me. Couple that with being a Black girl with a disability, the representation simply wasn’t there. The only disabled folks I ever saw on TV were the ones placed in front of a camera at telethons promising to raise money for disability research — the same telethons that were often criticized by people with disabilities for their negative attitudes about disability. We never watched a full telethon, but sometimes we caught them in between commercials. I’d sit impatiently on my living room floor, watching as the host stood beside a person in a wheelchair and told their story, sometimes crouching down beside them as they spoke in a belittling, babying tone. I remember thinking that these people with disabilities, the people the telethons choose to show and exploit, were not the only types of people with disabilities.
There is a sad truth known throughout communities of people with disabilities: exploitation. In lieu of telethons, a plethora of videos now make their way across various social media sites. These popular videos, known to some as “Inspiration Porn,” use the stories of people with disabilities and cut them into thirty-second clips with a dismissive and harmful caption along the lines of ‘Wow! I need to be thankful for what I have!’ Oftentimes these videos are shared with me by well-meaning friends and family. They expect me to be amazed by the man who can drive with his feet, the lady who is raising three kids without her legs and arms, and the child who excels at painting with a brush held in his mouth. These videos usually precede some sort of comment about how I shouldn’t feel upset over the hand I’ve been dealt, because other folks have it worse.
Here is the thing: the hardships of other people with disabilities don’t make me feel better. These videos don’t amaze me. They make me angry, because they are packaged to alleviate the misguided guilt of non-disabled people for not having disabilities. I used to announce that I was proud of these people with disabilities and of their innovation until I learned how ridiculous that very idea was. They never asked for my pride, and they don’t need it, because the act of survival doesn’t warrant the same immediate celebration for folks without disabilities. My loved ones who show me these videos don’t understand why they are so harmful. They’ve never stopped to ask themselves why they see a mere adaptation to circumstance as inspirational.
Most of the “inspirational” videos exploit the idea of attitudinal “inspiration,” the expectation to always “look on the bright side,” but that is just not the way the spectrum of human emotion works. No one is happy all the time, everyone has bad days, and it shouldn’t mean that their stories don’t matter. These videos feed the dangerous and dehumanizing expectation that all people with disabilities should strive to achieve behavioral “inspiration” — by adapting to the world; i.e., driving cars or cooking with our feet, doing our hair with the use of one arm. We are seen as extraordinary for these very things when they are really just daily acts of living for many disabled people. These behavioral “inspirations” also lend themselves to the idea that those who have not adapted in the same way are somehow less deserving of support or praise. Those who do not comply are to be ignored and dismissed.
There is still little to no genuine media representation for people with disabilities, especially those of us who are also people of color. At 24, I’ve now stopped to ask myself how the lack of proper representation has shaped the woman I am today.
I wish I could say that I love this disability, that I have grown to accept it, but I haven’t. Not yet. I still pick apart the things I can’t change: the permanent limp, the aching knees, the hand with curved fingers. All the things strangers seem to notice about me first are also the things I used to wish away. When I go out in public, I feel like the main event at a circus, the lion without a tamer, pulling the attention of passersby, nervous as they fill the surrounding seats with baited breath. But I do not want to put on a show, I just want to blend in.
The older I get, the more my anxiety in crowded spaces builds. I can’t help the way my heart races if a set of eyes I do not know lingers a moment too long, or if the question “What accident were you in?” falls from the chapped lips of store clerks and strangers. Often these strangers demand conversations about disability that I never wanted to have. They assert a false dominance, or state their unsolicited opinion. Once, while headed to my college senior capstone class, I was stopped by a woman who insisted on helping me with a blue folder that had slipped briefly out of my right hand. After reassuring her three times that I was fine on my own, she became indignant, blocking the snowy path to my building with her worn-out boots and demanding that I be thankful for what she considered her “random act of kindness.” I let her yell, watched as her right hand found her hip and her nose reddened from the cold. I let her yell, tightening the grip on my folder. She soon walked away in a huff, and I spent the remainder of the day wracked with guilt, wondering if I should have just let her help me even though I didn’t need it.
My disability gives me experiences, confrontations, and responsibilities that I didn’t ask for. It is a constant reminder of the societal pressure to rise above bad days, both physical and mental. I am, after all, an “inspiration” — or so I am told. But I don’t want to be an inspiration, especially not the kind other people expect me to be. Their “acceptable” versions of people with disabilities are expected to be happy and grateful, and if we aren’t then we are “bitter cripples.” We are then cast away, dismissed for being “mean” and “angry,” because we don’t conform to the smiling, excited, happy-to-be-alive personas that people without disabilities tend to feel most comfortable with. There is nothing wrong with being a happy and grateful person with a disability, but there is something wrong with the exploitation that unfair expectations breed.
I’m often resentful of this body that I am housed in. I am not able to go through life constantly wearing my disability like a badge of honor. I used to have a reoccurring dream that I was a snake, eager to shed this skin to arrive anew, to rid myself of an arm and leg that felt like a parasite I couldn’t shake. I used to want a second chance, a second body to jump into, so I’d know what I was missing. Sometimes, I still do.
Around this time last year, I made a list of all the things I didn’t like about myself. It was 21 items long. Then I sent my closest friends a text message that read: “I have to ask you a serious question. I want the truth, so don’t sugar-coat it. How long did it take you to see past my disability after we met?”
I do not know what answer I was expecting. Maybe an affirmation of what I always thought was true, that I am an embarrassment to my friends, that I held them back in some way. I expected them to tell me that my disability was too much for them, the way it often is for me. I received variations on the same answer: It was never a big deal to them; it was a thing they noticed at first, and then it became something they didn’t focus on.
I felt relieved by their answers, but now I am unsatisfied with my own. Now I find I want to belong to a real community of disabled folks. I want to ask them how they learned to like and love themselves. I want to try and love myself, too, one day.
When a tweet of mine about including disabled girls in feminism blew up, my good friend messaged me and asked, “Is it weird/wrong that I don’t see you as disabled, I just see you as a person? I completely forgot about your disability.”
I paused for a moment. I know this friend well; we talk often about feminism and politics, pop culture and the college classes that changed how we saw the world. We sat behind phone screens with a three-hour time difference between us, and had the best conversation about disability I have ever had with a non-disabled person. I explained to them that this idea, while its intent may be complimentary, is actually erasure. Telling me or other people with disabilities that our disability is something to forget is just as harmful as when my Blackness is erased with the claim “I don’t see color.” The problem with dismissing or ignoring these things about me is that doing so feeds the idea that we should ignore the things that make us different — that we should feel shame and guilt just for acknowledging that we don’t all share the same privileges or lived experiences. My Blackness, like my disability, is something that everyone sees, and even on days when I wish the latter to fade away, it will always be there.
When parents scold their children for looking at me or asking me questions, I often urge them not to, because I want to be the one to tell my story. If we don’t allow people with disabilities to tell their own stories, we run the risk of letting “inspiration porn” be the only access most other people have to us. If we aren’t able to tell our own stories, perhaps we will be erased from history, our truth fading away one Facebook video at a time.
I do not want to be an “inspiration” because I’ve found a way to adapt and survive. If I am an inspiration, let it be because my words inspired someone else to put pen to paper for the first time in a long time. Let something I’ve said, created, or nurtured be the thing that inspires people. These are the things I am most proud of. These are the things I want to celebrate on my own terms.
This was really interesting! One thing I’ve noticed is that people like to praise these people for over coming disabilities ( and they deserve it because awesome) but they are ignorant of the fact that it is hard and not everybody can achieve these things. And that is okay! Not everyone can be superwoman. Some people need help. Some people need medication. It is not only with physical disabilities but also mental as well as social problems. It just reminds me of people going “Look at her! She overcame depression and poverty ” and then expect it of all people who are poor or depressed.
Sorry for the tangent. You must have written successfully because you struck a nerve! I just wish everyone would just appreciate people for what they are themselves and not in comparison to others. Love everyone..
Hi! thank you so much for reading! I agree, I think we have to be mindful of the way in which we celebrate and condemn people with mental and physical disabilities. I’m happy to have struck a nerve. I hope this essay starts a conversation.
This is beautiful and perfect and so insightful. I used to work running summer camps for kids with disabilities, including an overnight camp for kids with cerebral palsy specifically. And I have to say, I did and do find those kids inspiring, but over time the amazement came less from them finding ways around their physical limitations and more from the ways they were finding to accept and love themselves, something I struggle with.
My daughter is getting to an age where she has started to notice people who look different physically, but doesn’t have the vocabulary to talk about it. I don’t know what to do, really. She stares at everyone, universally and without exception, in the way that most kids her age do, so we are working on that in general. I don’t want to be complicit in the erasure of anybody, so when I catch her looking, I talk about the limited things we can discuss that are within her understanding: look at how much fun that girl is having on the slide! She needs help getting up the stairs, but look at how her mom helps her! They must love each other like you and I love each other. Do you want to see if she wants to go down the slide with you?
I guess what I’m trying to ask is – do you (and anyone else in the community of disability present) think that is a reasonable approach? I know 100 people will have 1,000 different responses to anything I do, but I’m trying to find the most sensitive and inclusive way to handle this.
Hi! thank you for reading! I can’t speak for everyone but I think that your approach is great. It is important not to other and shy away from people with disabilities and your approach, in my opinion, is great because it does the exact opposite.
Thanks for your response, it does put my mind at ease a little. I kind of feel like I’m at the easy stage of dealing with this right now; I know that sooner than I am ready she is going to have specific questions. Side A is I don’t feel like I have the right to explain anyone’s diagnosis to her (if I even know it), and Side B is that I don’t think that she has the right to demand anyone explain themselves to her. Hopefully we can strike a happy medium of seeing and understanding that others are different and know what is our business and what is not when it comes to strangers.
Or, even better, let’s hope I come up with a better strategy by then.
“What accident were you in?” Shit, man! What do you say to that kind of entitled impertinence, “Genetics, asshole!” or what??!
The asininity of strangers aside: this was amazing and supremely well put. Nolite te bastardes carborundorum, I guess.
Agreed. People: they’re the worst. 🙂
I remember someone online saying that when people look in horror at her wheelchair and say, “But what happened?” she says, “Sex accident. Worth it, though.” I’ve never had the guts to do that myself.
When I was an edgy teen I used to tell people I got my spinal surgery scar in a knife fight. Because of course I did.
Yes. Thank you for writing this!
Excellent essay. I appreciated your simple and clear explanation of why “inspiration porn” is so harmful/hurtful.
Thank you for writing this. When I was 18 I found out the class president was using me as a charity project by “helping” me go to prom, because I’m autistic and it would have been “inspirational”. The guidance consoler sanctioned this. She was using it on college apps as a community service project. I didn’t even want to go to prom! I had to be told by her ex-best friend who was mostly just warning me that she was a toxic person because there was nobody who saw anything wrong with using me as a prop. Thank you so much for laying out why this mindset is so hurtful and helping change people’s minds about this.
Hi! thank you for reading! I’m so sorry someone did this to you. What an absolute jerk. I’m glad I could help in any way.
She was using it on college apps as a community service project.
^ My exact face upon reading that. I am SO sorry that happened to you, LadyBertilak
My “thumbs up” on your post should be read as “That’s horrifying and not at all a good way to treat another human being.”
Wow. The fact that no one in this girl’s life saw fit to tell her this was a grade-A bad idea illustrates how much essays like this are needed. I’m really sorry you had to be exposed to this person.
I’m disabled, and I was bullied through junior high and HS. I specifically told my mother I *did not* want to attend my HS prom. She blithely ignored me, spent buckets of money buying tickets for my (male) best friend to fly in from out of state, buying the tickets, buying my prom dress/shoes/etc, continually ignoring my pleas that I didn’t want to go.
I’m epileptic (among other things). When I showed up to prom with my date, the entire ballrome was strobe-lit. I told my date I wouldn’t be able to stay in the ballroom, I’d have to stay in the outer foyer. He ignored me and went to track down all his old friends he’d lost contact with when his parents moved out of state.
When we finally returned to my parents’ house, they asked me how the evening went. They were genuinely surprised and angry when I burst into tears and tried to explain what the evening had been like. I was accused (not for the first time, by a long shot) of “being ungrateful (my mother’s favorite word to describe me), we spent so much money on your prom, the least you could do is say thank you instead of being a crybaby!”
My mother still clings to the illusion that, 25 yrs later, I look back fondly on prom. She’s continually surprised, on the occasions she’s dumb enough to say things like “Wouldn’t you like to experience that again?”, I always answer with an emphatic “No!”
She’s always been the martyr who suffered through a terrible marriage (they’re still together, it’s been 46 yrs so far) so that her poor, handicapped daughter could have a better life. How can I be so ungrateful, when the only person she’s ever cared about is me?
*Eyeroll*
Hi, thank you for reading! What a really shitty way to have to spend a prom you didn’t even want to go to. I’m so sorry you’ve had to deal with all of that bullcrap. Your date doesn’t sound like much of a friend anyway, you deserved so much better than that.
My parents didn’t know it, but he’d already gotten involved in the drug trade before his family moved out of state. He spent the entire prom looking up his old connections and doing deals.
The highlight of the evening, probably the only bright spot for me, was when I started chatting with a guy at the after-prom party. Turned out he was the date of a former friend of mine, who’d stopped talking to me because I “walked funny” (multiple brain surgeries and congenital balance/gait issues will do that) and I was “too needy.” He was talking to me like I was *gasp* a normal person, and I could see her doing a slow burn behind him.
🙂
God so many sympathies about parents using your disability against you. The prom inicident is one of the few times my mom didn’t & that was mostly cus she hated the girls mom in the first place. I’m so sorry she & this guy put you into a literal physically dangerous situation so they could feel better about themselves. That sucks and you didn’t deserve it.
Please, please tell me that colleges laughed in her face. Because that is BONKERS levels of delusion she was demonstrating.
I don’t actually know what happened to her, I cut off contact after graduation. She does keeps trying to friend me on facebook and I ignore her. It hasn’t even been a year did she think I was gonna forget?! People have really high levels of entitlement when it comes to disabled people though, plus she was just a generally manipulative and unpleasant person.
Thank you for writing this!! I completely agree with everything you’ve said.
I haven’t had those kinds of comments directed at me personally, but I’ve done some work as an attorney with kids and adults with disabilities, and have a number of close friends and family with disabilities.
I find it maddening when people say things like you mentioned, or make sweeping generalized statements (e.g., “kids with Down Syndrome are all so happy and loving!”) The individuals I know are real people! With a full range of emotions! Sometimes they’re angry or frustrated, sometimes they’re mean to their siblings for no reason, etc., just like anyone else. Statements like that take away from their humanity and individuality, as if they don’t participate in the full human experience.
One of my best friends from college has a baby with Down Syndrome (and they’re both coming to visit for a few days starting tomorrow, which makes me very excited!). She found out while she was pregnant, and she was understandably scared and a bit in denial. My parents were saying things like, “But people with Down Syndrome are so loving!” and…that’s just not helping.
I just let my friend take the lead in any conversations about it. I did ask whether there was anything we needed to be mindful of while they’re visiting, any needs he might have beyond a normal five-month-old (who are, let’s face it, very needy already). But I’m not going out of my way to post “Yay! Down Syndrome kids can do anything!” links on her Facebook wall, since she is infinitely more intimate with the situation than I am.
(On a semi-related note, I have Stage 4 breast cancer (I used to post here as FortyTwo before registering this account), and I hate getting inspiration porn about people overcoming their cancer. People keep sending me links that don’t feel relevant to me. Early on, I would even get mad at cancer treatment commercials on the radio and television–all cancers are different, and the wonderful treatment they got isn’t what I can get, so…yeah. I was angry. I’m doing much better, physically and emotionally, but I still grimace when my friends say I’m an inspiration because I’m existing.)
I’m so sorry to hear that! I wish you all the best.
“Cancer as an inspirational metaphor/ battle” is a whole ‘nother thing that sets me off in a rage. Especially the strains of thought that cancer is either something you can fight like a war, or defeat with the magic power of positive thinking. (Which, presumably, means that if someone doesn’t do well, then they must not have fought hard enough or been positive enough…)
I don’t know if you’ve read Barbara Ehrenreich’s book “Bright Sided”, but she writes about that kind of thing (e.g., pink ribbons and smiley faces for breast cancer) very eloquently, based on her own experience.
Oh, I really, really agree with this. I have a severe chronic illness (and identify as a person with a disability) and I hate the kind of language that situates people like me as “fighters.” I respect that it may be helpful for some people, but I don’t feel like I’m fighting. I’m just doing what I need to do. The implication that a decline in my health is due to my “not fighting hard enough” is pretty insulting.
Uggghhh that whole “fight your cancer war!” thing really gets to me too. My experience with cancer was that I felt like the battleground; the war was not being fought by me, it was being fought by my doctors. I was just kind of the collateral damage. I did get better, but sometimes when I see that stuff I wonder if it’s just a way of people making sense of the nonsensical – it’s really hard to come to terms with the fact that cancer is random and horrible and uncurable and illogical. So if we assign “responsibility” to the patients, then it makes things a bit easier to digest.
My mom used to get a lot of that, (stage 4 breast cancer, too–well, breast cancer that became lung cancer that turned into brain cancer) and it sucked for her. People used to send it to me, too. “Your mom should totally try this,” or “if she’d just go all natural in this area,” and it drove us both crazy. One girl I went to high school with went so far as to private message me on Facebook after I posted something about my dying mother, (seriously, I think it was maybe a week before she passed) to send me a bunch of links about what she could be doing and alternative methods that could save her life. We aren’t “friends” any more, and I hope she realizes why and doesn’t try that with anyone else. At the time, I wasn’t in an emotional state to do anything but yell at her, so I opted to just ignore her.
Mom got a lot of “you’re so strong” and “she’s such a fighter” nonsense, too. Like cancer is something that one can just will away and if one’s just strong enough they can beat it. I think most people just don’t really know what to say and don’t realize that “I’m sorry, that sucks” is sometimes better than expecting someone who’s going through hell to just grin and bear it and look on the bright side or whatever. Because by suggesting that someone is strong and brave for fighting cancer is indirectly suggesting that those who don’t make it through aren’t strong or brave.
From my indirect experience with the disease, as far as I can tell, it all boils down to luck. It doesn’t even matter if two people have the exact same kind of cancer; no two people are going to react to the same treatments the same way. It’s good to keep a positive attitude in general in life if one can, but having a positive attitude isn’t going to magic away a terminal diagnosis. It’s okay to be angry and sad and frustrated.
It used to drive me crazy that any time Mom said something negative or talked about dying people would say “oh, you shouldn’t say that,” or “you have to think positively,” but a lot of those same people would tell me how sorry they were for me when she wasn’t in the vicinity. It was like, as someone who wasn’t sick, I was allowed to feel awful about her illness and about the prospect of losing her, but they didn’t give her the same right. She had to keep a positive outlook to make other people more comfortable around her, and that sucked. I tried my best to let her know that she didn’t have to do that around me, but seeing as she was also my mother and had spent my whole life trying to keep me from being hurt, I doubt she was really very honest with me about how she felt either.
I’m sorry people don’t know how to talk to you. I hope you have at least one person in your life with whom you can be completely honest about how you’re feeling. You’ve been dealt a shitty, shitty hand, and I hope you have the support you need to handle it the way you need and want to handle it.
I like the attitude in this comic: https://xkcd.com/828/
I sent it to my Dad when he was diagnosed, because some people were telling him “you don’t need to sit around and be depressed!!!!!!” And I was like, you just got diagnosed with prostate cancer, be depressed if you want. My dad is very lucky to have had good doctors and a treatable form of cancer and he seems to be doing fine now, so obviously his negative attitude didn’t harm him…
There are some people who like to be seen as fighters. There are some people who don’t. I feel like people usually let us know how they want to be seen and it’s up to us to listen. I am trying all the time to be better at listening.
I also really liked this article: http://articles.latimes.com/2013/apr/07/opinion/l…
Oh, don’t even get me started on the natural cures people! When I was diagnosed, a distant in-law (my husband’s uncle-by-marriage’s sister) mailed me a stack of photocopied literature about natural cancer cures. The horrifying thing is that her husband has prostate cancer, and she’s convinced him that medication will kill him. She even says shit like, “Well, his tumor markers aren’t going down, but he’s getting better! The natural cures are obviously working.” NO! If his tumor markers aren’t going down, then HE’S NOT GETTING BETTER! I can’t even with her. Fortunately, my husband does a great job of screening such interactions.
I get a little reprieve from people because I have the BRCA-2 mutation; when you can point to a gene and say, “I had an 85% chance of getting cancer, no matter what,” people are less inclined to blame your lifestyle. It shouldn’t be that way–no one “deserves” cancer, whether it’s genetic or not. But still, that shuts them up.
Thanks for the kind comments! I swear, I’m not as angry as I seem. It’s been a year since the diagnosis, and I’ve come a long way. Bringing it back to the topic at hand: I don’t feel inspirational. I’m just getting through my days. My doctor is the one who did the work, fighting the insurance company to get them to pay for a drug that isn’t FDA-approved for my type of cancer but has shown a lot of promise in the trials (and it’s working great on me). I sort of resent that my short, regrowing hair and back brace (the cancer got to my spine) mark me as injured and bring me attention that I didn’t seek. I resent that I can’t stand up straight like I used to. But this isn’t really an accomplishment, and the things that I do that are accomplishments (like earning my PhD) shouldn’t come with a disclaimer of, “And she did all that while fighting cancer!” I don’t want my work to be tagged that way forever.
As a deaf person, right on. Usually, we get to “pass” (barring the presence of hearing aids or cochlear implants)–and then we either open our mouths or start signing, and the stares come. There are those who compliment my speech–“Uh, thanks, I guess? I didn’t ever want to learn to talk, but I didn’t have a choice, but thanks”–those who think it’s funny to say, “Hey! I know a sign!” *extends middle finger* and those whose wits completely fall out of their head as they start figuring I can’t read, write, or communicate in grunts. Life is a rich tapestry.
But the worst of all of that is indeed inspiration porn. “Kaileegh can field a line drive like a demon, hit 500-foot homers at the drop of a hat, and slide home less than five nanoseconds after the bat makes contact. Yet when the folks in the stands cheer, she hears only silence.” Or: “Ramon has won five straight science competitions, holds six patents, and has been accepted to every single Ivy League school. In fact, the only thing he can’t do is hear.” Or those horrible, horrible videos of kids who get their cochlear implants activated so their parents can video them going, “Holy shit! I’m normal now!”
When it comes to deafness, it becomes increasingly clear, as the years go on and the numbers of children forced into invasive surgery and years of unpleasant speech therapy lessons increase, that the erasure of deafness is becoming horrifyingly literal.
Sorry. I have an agenda–or a chip on my shoulder. Whichever. Either way, you speak unvarnished truth.
Hi! thank you for reading! inspiration porn in all it’s forms is the worst. It’s not fair to any of us, it is so demeaning. so othering. The assumptions of what we can and cannot do as people with disabilities are so far off base. I would never assume half of the things mentioned in your first paragraph of other abled folks and they shouldn’t of us.
Oooh those “baby hears his mother’s voice for the first time” videos make me SO MAD. I mean, yeah, it’s cool that the technology works, but that baby is just as bonded to his mother without hearing her voice as any other baby.
Holy crap, that does sound awful. “Kaileegh can field a line drive like a demon, hit 500-foot homers at the drop of a hat, and slide home less than five nanoseconds after the bat makes contact.” That’s all you need to know about her, period, to know she is awesome.
I’m HoH and I cannot agree with you more. Both my brother and I were born HoH and as the only ones in our (immediate and extended) family who are HoH, no one was really sure how to react to it. My parents went through a (thankfully brief) time when they were deeply researching cochlear implants and discussing it with us, and for years after that my cousins would email my mom news articles every couple months of every technical advance in cochlear implants or hearing restoration research like stem cell treatment. I was never very interested in it myself but dang, what a way to know exactly how a lot of people in my family see me.
I was raised orally. Just last month a speech therapist, who I had never spoken to or even heard of before, called my house (which my parent had to answer because nothing says speech therapist like not understanding basic facts about HoH/Deaf people) soliciting me for more speech therapy. So far as I can tell, my audiologist decided my speech wasn’t clear enough last time I saw him and gave my contact info to the other guy. I will not be going. Maybe it’ll hurt my job prospects, but I’m not interested in spending yet more months of my life in therapy so that I can continue to be unable to participate meaningfully in oral conversations with better punctuation.
Thank you writing this Keah. This is so accurate and powerful.
Thank you for this. I spent so much time and energy when I was younger trying to be the Inspirational Disabled Girl both because that’s the only way I ever saw disability represented and because adults in my life told me I was inspirational like it was the highest compliment. I wish I could go back in time and tell myself to fuck that.
Oh my god this. The energy you (General you not specifically you) have to expend to prove you’re not like Those [insert disability here] People to make the abled people around accept you is /tremendous/ and in no way worth it because that may be some twisted form of acceptance but it sure isn’t respect.
I mean this 100% respectfully and am just asking because I want to make sure I do the right thing: what is the best way to “help” a disabled person? For example, if I see someone who is having trouble picking something up (as I’m not a doctor, I don’t want to pretend I know the name for a condition that would cause this), should I stop and help that person? Should I just ask if they need help first? I don’t want to be like that awful woman who lectured you, but I also feel like we all need a helping hand at some point or another.
I really appreciated your essay. It was beautifully written. 🙂
EDIT: I should also add that I’m only asking you because you just wrote about life as a disabled person. I know that while your disability is a part of you, it is not the only noteworthy thing about you!
I’m not physically disabled so I’m not equppied to answer this question but this seems like an incredibly inappropriate place to ask that question. I know that if I wrote from my perspective as a developmentally disabled person about something like this, and someone came saying “but you /do/ need help right? How do I help you I need to help you” I would be incredibly hurt and feel like I wasn’t being listened to. I’m not saying that was your goal but maybe in the future to please try to look at it from the author you are trying to engage’s perspective as to how your questions will sound. Because this seems very unitenntional disrespectful.
That was not my intent at all. Mostly I was just reflecting on the author’s anecdote about the awful woman who lectured her after trying to “help” and remembering the times when I, with the intent of helping, have held the door open or picked something up for someone who was disabled. I always did it without thinking, but this piece made me think more about what I did and what kind of message I might have been sending. So I wanted to know: should I help? Obviously, giving a lecture after trying to help is incredibly rude, but is there a “right” way?
And I would argue that this is precisely the place to ask these kinds of questions. This is an interesting piece about disability representation, and the great thing about interesting pieces of writing is that they inspire more questions.
I know that was not your intent. That is why I said it was unintentionally disrespectful. Let me try to explain, maybe I’m not using the right words. Taking a anecdote that ends with:
“…I spent the remainder of the day wracked with guilt, wondering if I should have just let her help me even though I didn’t need it.”
and turning into being about how much you want to help disabled people seems very much off message from the piece. You probably didn’t mean to but it very much comes off like “yes I see your experiences but I want to help no matter how that help makes people feel”, which is very much not in line with the rest of this piece, in my opinion, even if that was not your intention. Everyone has internalized ableism they need to work on unlearning, including disabled people. I am not saying you’re a terrible person for this, just that you should think more about these things before making it about your own feelings, especially if you are not disabled yourself. A side effect of these kinds of inspiration porn messages, and how we talk about disability in general, is conditioning abled people to think about disability in how it affects them and only them, not actual disabled people. This is not your fault, it’s societies, but it is still something you probably need to be aware of.
We clearly read OP’s question very differently. They didn’t at all suggest that they “want to help no matter how that help makes people feel.” They specifically asked whether or not they should offer help and how to go about it respectfully if they should. It read as “yes, I see your experiences, and I don’t want to be someone like that woman, so can I please respectfully ask how to avoid it?” If someone’s obviously struggling with something and you walk right by them, you can kind of end up being read as an asshole, too. I’m not disabled, but if I’ve just dropped the contents of my bag everywhere, or am having a hard time opening a heavy door, or getting a suitcase or stroller up a flight of stairs in the metro, and someone obviously sees me, but then just keeps walking, my reaction’s likely to be negative, too. Helping is being a decent person, regardless of the abled vs. disabled status of the people involved. It wasn’t about OP wanted to feel better about themselves, or their feelings, it was about not wanting to make a disabled person feel worse. And it was a question posed directly below an article enumerating what abled people do that isn’t helping. It seems reasonable to ask what would be helping.
You are not disabled. Therefore you do not get to decide what disabled people think is out of line or not. Helping someone who is obviously struggling with something heavy is miles different from insisting on helping someone who is visibly physically disabled, just because they are physically disabled. Insisting on helping a disabled person regardless or not they want that is extremely infantilizing and self congratulatory and non disabled people do not get to decide that that isn’t ableist because that is not an oppression they don’t face.
I agree that this seems like a pretty decent place to ask the question, and clearly your intent is to try to avoid offense not cause it. Especially given your examples, such as picking something up, or holding open a door. I would do that for anyone, disability or no, but at the same time, don’t want someone who has a disability thinking that I’m only doing it because I think they can’t do it for themselves. Or take the author’s mention of “if a set of eyes I do not know lingers a moment too long.” Sometimes I look at someone too long, but that’s just because I’m awkward, not because I’m intentionally staring, but then what do I do? One person might interpret my looking for too long (an amount of time which can only be interpreted by the person on the receiving end) as offensive and another might be more offended if I quickly look away. Obviously any response Keah has is going to be subjective, and not representative of how all people with disabilities feel, but isn’t it better to have some idea of how it makes at least one person feel? Especially when that person is writing about what not to do, isn’t it a decent place to ask, “well, then, what would be better?” She didn’t seem offended by the above commenter who asked how to handle her child’s questions.
I don’t in any way think that a member of a particular group (be it disability or race or sexuality or religion or gender identity or whatever) is responsible for educating people outside that group in general, but in the comments section of an article that is presumably attempting to educate people who can’t related to the author’s experience as to what sort of behavior is and isn’t helpful? This seems like pretty much exactly the place to ask.
As a lesbian, (I know it isn’t comparable, but it’s my personal experience, and that’s all I’ve got to go on, so bear with me) I’d be pretty annoyed if someone just randomly asked me to explain what is and isn’t offensive to me, but I’m open to questions if we’re already discussing it. How is anyone supposed to be a better straight ally if they’re afraid to even ask how to be better? If I mention that I hate it when people say “I’m not gay, but I support gay rights,” or when they show up to Pride wearing a shirt that says “straight but not narrow,” but then get offended when they ask me what they should do instead, that seems counterproductive. It’s offensive because it’s still othering me. Showing up at Pride with a “straight but not narrow” shirt, to me, reads as either 1) “I support you but want to make it clear that I’m not one of you, or 2) “I don’t even have to support gay rights, look at what an awesome straight person I am.” I don’t think it’s my responsibility to go around educating every straight person on what I personally find offensive as a non-straight person, but if I bring it up, I think I should be willing to talk about and answer respectful questions.
You responded to the author’s specific scenario with a specific question that directly related to part of the piece, presumably after seeing her respond to other questions, as your comment wasn’t near the top. You didn’t suggest that you needed to help a person, you asked very clearly whether you SHOULD stop and offer assistance or if you should ask if they needed assistance. That seems like a fair question given the nature of the piece.
There is a difference between staring because you’re spacing out and rude staring. Since I’m a lesbian too, I’ll use your comparison. Can’t you tell the difference between people looking in your general direction and staring because you’re holding hands with another woman? I was not attacking op, I simply said that they had some internalized ableist attitudes they should examine, like everyone does, because we live in an ableist society. I am feeling a little personally attacked especially since you’re not disabled, and commented on me twice to tell me that my experiences of ableism aren’t valid.
Your experiences of ableism are valid. And for what’s it’s worth your discomfort with some of the comments on this piece is shared.
Thank you, smiavs. That is why I added the edit (before anyone else commented on my post) about how I am only asking because she wrote a piece about living with a disability. I certainly wouldn’t wander over to another piece written by Keah and comment, “Great piece about puppies! Now let me ask you about your disability.”
I know that I live with privilege. I am an able bodied, white, straight, cisgender, American. That is the lens through which I see the world, and the only way to become a more understanding person is by asking questions in the right context. This seemed to me to be the right context.
I thought your comparison to being gay and dealing with “straight but not narrow” people was really interesting! There is a time and place for questions, and there is a time to just be supportive. What sucks is that it seems to fall on you (as a lesbian) to be patient and explain things to people who may not understand why what they say/do is offensive.
While I believe that you did have the best intentions (for whatever that’s worth; I’m not disabled), I’d argue that this was indeed not the place to ask. Just as we wouldn’t want to see even a well-intentioned dude coming to a piece about catcalling and asking what the correct way to interact with women is, others shouldn’t have to see able-bodied people on a post about disability inspiration porn asking what the correct way to interact with disabled people is. If it’s a question that only the author of the post can answer, that might be one thing, but this is a super googlable topic.
I would actually have no problem with a man expressing an interest in how he can more respectfully interact with women at a panel about catcalling. Positive change starts with respectful conversation. What my question was really about is seeing beyond my privilege as an able bodied person and getting more information about how I can more respectfully interact with people who are disabled.
And of course this topic is googlable. Everything is googlable. Hell, I’m sure Buzzfeed has a listicle on the topic. But in the past I have really enjoyed reading the conversations that take place on The Toast. So I posed my question about perceptions of disability here: a comment thread about perceptions of disability.
I understand your conumdrum because it’s one I’ve had as well. I usually just throw out a casual “Need a hand?” It’s the same thing I say to anyone who’s carrying a lot of stuff or drops something or whatever. I guess it gives the person in question, disabled or not, the chance to refuse my help. If they say “no, I’m okay” then I’ll just continue on my way.
I do this because I appreciate people helping me when I look lost or I’m struggling ( as often happens). In fact, I might have ended up walking across Berlin to my hostel last year if a very nice older gentleman hadn’t offered to show me how to use the automated u-bahn ticket machine.
asking somebody what they need is generally the way to go. disabled people, we’re just like people!
(sorry, this is glib, but c’mon. special instructions are not really needed to ask someone “can i get that for you?” and listen to their answer. which, by the way, there’s never going to be one answer. so i can’t tell you the guidelines for interactions with cripples because they’re going to be different given that, once again, we’re all different people.)
I get why my question might seem stupid. I mean, obviously the easiest thing to do 99% of the time is to just ask, “Can I help you with that?” But as you can see in the other comments in this thread (started by my original post) it can get more complicated than that. At least one other person on this thread interprets even the act of asking as “LOOK AT ME HELPING AREN’T I A GREAT PERSON”.
So, I still wonder: as someone who is not disabled, are there ways that I act that a disabled person might find offensive? For example, a few years ago I worked with a man who grew up with a stutter. He has it mostly under control now, but it took him many years to get to that point. One day we were talking about something or another, and he mentioned that he hated it when people would try to “help” him by jumping in and saying the word that he was having difficulty with. Now, I can’t remember if I have ever done that to a person. However, as a person without a stutter, I would have never thought of that as hurtful. I would have thought, “hey, let me help this person out and just say the word so we can move on with that conversation.” I certainly would not do that now.
And yes, I get that everyone is different and that listening is the important thing. That’s what I am trying to do now: listen.
Are you listening though? Rubyredstained is right, people with disabilities really are people. No one can give you a list of the things you might be doing that people with disabilities might find offensive because we are all different people. Asking an individual specifically is good. So is educating yourself. Feminists with Disabilities is no longer updating but their archives, specifically their 101 tag, is a good place to start. http://disabledfeminists.com/category/101/
Man. I am totally not the point of this interaction, but as I lurker I just wanted to express gratitude for this whole thread– both for the vulnerability of the original post and for the measured but clear pointing out of the problematic privilege in it. I’m an able-bodied person who initially didn’t see the full issue with this line of thinking despite some exposure and I’m now thinking about it differently after sitting with the responses and my reactions to them (and also now absolutely devouring that disabled feminists website– thank you!) Again– totally not about me and I probably should’ve gotten these concepts long ago, but just wanted to say thanks anyways for making something click in my weird, little brain that hadn’t before. toasties are just the best.
Tl:dr– I love this comments section y’all.
i want to reiterate what SmrtCookie said: are you listening though?
because it doesn’t feel like you want to hear what i, and others, are saying. it feels like you want to be reassured that either: a) you have nothing to worry about in regards to the past examples you’ve given, or b) that there is a point-by-point breakdown of how to interact with people with disabilities in every possible situation. i’m telling you, i can’t give you either of those things.
are there ways you act that a disabled person might find offensive? well, yeah, because that’s what happens when you exist within a world that is systematically ableist (as we all do).
to be honest, i feel like you’re misrepresenting what LadyBertilak said because you feel it’s unfair to you. it seems to me what they were saying was not that the act of asking whether a disabled person needs help = “look at me helping aren’t i a great person” but that what you’re doing right now, bringing up past interactions with disabled people and framing your own anxiety and guilt over whether you acted “correctly” with them as the takeaway seems like you’re asking for props for being an… okay person?
the fact that you repeated your question with a different anecdote again makes me wonder if you’re hearing what i’m saying so let me repeat my answer. every disabled person is their own person.
obviously you can ask a person, any person, including disabled people, if they need help if you think they do. then listen to what they say and respect it like you would with any other human. this isn’t a 99% of the time thing, it’s 100% of the time.
can you not understand how frustrating it is to be expected to perform emotional labor to coddle an abled person through basic interactions with disabled people on a piece which is explicitly about the ways abled people dehumanize and dismiss us?
No one has answered your question!? I’m not the author, and I’m not disabled, but my mother has MS, and has recently discovered a lot of the shitty things about being visibly disabled in public that the author has mentioned. With that caveat in place, to make it clear I can’t speak from person experience and don’t want to speak for anyone as much as offer some insight, one of the things that drives my Mum crazy is when she’s for example, using a heavy door to balance herself, and someone behind her who is maybe in a hurry or maybe thinks they’re helping pushes it wide open and she has to rebalance herself to avoid falling. She tells me that “the current popular etiquette” about addressing disabled people who might be struggling is to always ask before helping, and not push if the person says they’re fine. What jumps out at me about this is that it treats a disabled person in a manner that neither makes the disability invisible (because you observe frankly that they might need help) nor singles them out further (anyone who asks to be left alone should be left alone, so you do).
I feel like I’m not really qualified to address the argument that broke out here. I see your question as coming from a place of respectful curiosity and goodwill, and I answered it because a) I saw no one else had, and b) I gather people who need these types of answers disseminated (like my Mum) are kind of sick of being the only ones to answer. I don’t see what’s inappropriate about reading about an annoying phenomenon, seeing yourself doing the thing, and then trying to learn how best to avoid doing it in the future. That is the spirit in which I offered my insight. I hope it’s useful.
Editing to add, my phone formats replies funny and I now see that several people have said approximations of what I said, but I couldn’t tell they were in reply to your original comment. I was thinking of the “emotional labor” of being the disabled person people ask when I jumped in, effectively to say, “this is exactly how far my knowledge stretches but it might be useful.” The larger discussion about whether this is an appropriate place to ask the question in the first place is not one I feel I can comment on either way.
Thank you. 🙂 If I saw someone who seemed to be struggling with a door, I would have never thought that they might be using the door to balance themselves. I will keep that in mind in the future! And, of course, I will remember to ask before doing anything (if possible) and take the person’s answer as the truth!
I find this “Inspiration Porn” idea to be the flip-side of pity. I think able-bodied people can feel pity for people with disabilities, which is highly uncomfortable for them, while the idea of disabled people being an inspiration is an easier feeling to manage and helps assuage the “guilt” of being able-bodied.
I have CMT, which is honestly not noticeable in everyday interactions, but I started having to wear leg braces last year, which marked a weird shift from invisible disability to a highly visible disability and people’s reactions are angering and startling, from noticeable staring to trying to help me with mundane tasks. (Tasks that are completely manageable because, the braces.)
Pieces like these, frank and true talks about disability from people with disabilities, are incredibly important to me. I’m still trying to cope with the fact that I’m always going to have an uncooperative body. Thank you for writing.
Man, I just always feel like a horrible garbage person when I see someone with a visible disability struggling with something and can’t decide whether to offer help or not. I typically go for a very casual, “Hey, can I give you a hand?” from a distance, in the same tone I’d use to offer to help someone with an armload of groceries or a baby or something. But then I feel like an extra garbage person because I’m getting all angsty about it and it’s not about me at all.
Wow. You’re posting on a piece about ableism to tell us that when you see disabled people out and about, we make you feel like a “horrible garbage person”. Have you any idea how rude that is? Go and read up on disability rights, educate yourself rather than expecting disabled people to do the emotional labour of educating you, unpack your guilt and pity and loathing, and don’t stop until you have neither those horrible thoughts nor the urge to tell them to disabled people in a comments thread.
A point that may blow your mind: people with an armload of groceries or a baby or something may be disabled too. We’re not a separate category. You don’t get a cookie for treating us as if we were human and then boasting about it. We are human.
Sorry to offend. I was expressing my desire not to be offensive or ableist and, in slightly hyperbolic language, my inner conflict about what to do in situations like I referenced. I asked no one to help me, give me a cookie, or do emotional labor for me. I don’t expect people with disabilities to do any of those things.
I fully recognize your right to be angry and frustrated about those things.
I’m thankful for this piece because it eloquently says what I have felt, but haven’t been able to put into words.
I have a disability myself and I wrote my master’s thesis on how people with disabilities integrate that particular piece of their identity into their overall sense of self. What I learned from the experience of researching my thesis is that people approach their disabilities in many different ways – many of which don’t fit the “happy, grateful disabled person” mold.
I count myself among those people who deal with their disability in a way that isn’t easy or comfortable for others. The genetic hand I was dealt is a shitty, difficult one, and I feel a lot of ways about it. I’m not grateful I was born this way because it “made me the person I am” or some such trope. I would absolutely wish it away if I could. And while I respect that some people with the same disability choose to approach it in a way that others may find “inspirational,” that’s just not my style.
To have those select few held up as the example of The Way People With Disabilities Should Act is insulting and invalidating of my experience. I resent the pressure (implicit or explicit) to change the way I approach my disability in order to make others feel better, or worse still, to “inspire” them.
In other words, I yam what I yam. Thank you for your writing. I identify so much with what you have to say.
This piece was so good and I agree completely!
I really hate the “I don’t see color/disability/gender/sexuality” discourse because it means you equate how you feel about people with how you treat them. It also means you treat everyone the same, and to some degree have the same expectations of people regardless of difference.
In a slightly less serious example, I don’t make the same food for everyone, because I know some people have allergies and dietary restrictions and it’s not equal if some people can’t eat. And as a person who can’t eat certain foods without getting sick, I would want people to do the same for me.
Basically if you say you don’t “see” what makes people different that also means you aren’t acknowledging or accommodating that difference.
I really appreciate this beautifully written explanation. It reminds me of my favorite underrated Youtube clip, a disabled comedian pointing out the “inspiring” acts of passersby: https://www.youtube.com/watch?v=fx9fAEJeI0E
This is such a beautifully written essay.
I’m not physically disabled, but I am mentally ill, and this whole idea of “inspirational” or “acceptable” disabled people is something I really struggle with internally. I often seem like I’m perfectly fine and function pretty well in neurotypical spaces, but that is literally *because* of my combination of mental illnesses. (Depression + severe general and social anxiety, with a major trigger being failure of any sort. It’s an…interesting mix, to say the least.) How many people see me as one of those “inspirations” because I have learnt to hide the effects of my poor mental health so well, because I have internalised the stigma around mental illness so thoroughly? idk, man, it’s all just kinda exhausting.
This really touches a nerve for me. I don’t have a disability, but my sister does, and it drives me crazy when people say how ‘marvellous’ she is in that horrible patronising way, or when I mention her to someone who doesn’t know her and they are terribly sympathetic. She’s not marvellous! She’s intelligent and funny and sometimes a prize bitch and none of this represents a miraculous overcoming of her disability or the pitiable causes of it. Those ‘inspirational’ Facebook posts always make me cringe.
A particularly nasty side effect of inspiration porn (in my opinion) is the massive clumping together of disabled people into one large category. I remember seeing a music vid where the singer cooperated with a blind kid who played the piano and then the text “If he can, what’s your excuse?”
I hated that video so bad because it was all about him being blind and Oh my gosh he could play anyway! If he can, you can!
Never mind that he actually had talent.
I wanted to do a version going “This able person has climbed that mountain. If he can, you can!” but I fear it wouldn’t be understood because able people are allowed to just say “I can’t do X” without getting questioned and pushed about it.
Sorry if I seem rambling, I just find it hard to correctly express the frustration of seeing people talk about disabled people like we’re a generic mass.
I hate it too, Jen. I think we are never given the benefit of the doubt. We are either capable or not and we are demeaned either way.
This was a great and enjoyable article. I hate those facebook posts too.
Also, the word ‘brave.’ What do we mean by ‘brave?’ According to my very unscientific study (sample of 2), we mean they have chosen to live. Yeah. What’s the alternative – physical or social death. ‘Brave’ seems to be a euphemism for, “You didn’t kill yourself. Good for you.” Anyone have any ideas about this?
Personally, I don’t want to hear that I’m brave for having lupus. I didn’t choose it. I’d rather hear comments that show some sort of compassion and understanding, thoughtfulness, or even curiosity about what it is than to hear that I am brave. When someone tells me I am brave, I feel put on a pedestal and erased as human being. I don’t choose to tell a lot of people just for that reason.
You’ve made me realise that I automatically flinch away from even thinking about why people call us “brave”, and I suspect you’ve hit the right reason behind it. At the very least, they are referring to us just living our everyday lives. In other words, living at all.
And I seriously doubt that someone is going to tell me I’m brave because I got into the shower this morning even though I was too ill to, and recovering from that has meant that I have had to cancel my plans of having a friend round to watch TV. They’re really not interested in the day to day difficulties of our lives.
Thank you for writing this.
Thank you. 🙂 If I saw someone who seemed to be struggling with a door, I would have never thought that they might be using the door to balance themselves. I will keep that in mind in the future! And, of course, I will remember to ask before doing anything (if possible) and take the person's answer as the truth!
Fantastic essay, Keah!
Fantastic essay, Keah!
I hate the word “dis-abled”. I don’t want to see disabled people. I want to admire DIFFERENTLY-ABLED PEOPLE. I use a walker and wheelchair because I am differently-abled. These are my enabling tools.
Interesting. We do have a huge terminology problem with so many areas of disability. You’re the first person I’ve encountered who chooses to use the term “differently abled” about themself. I shrank away from the term “disabled” for years, as is common, but now I’m used to it and have found that it makes a lot of things in life easier, usually in terms of being able to access something or convey information quickly. I’ve never actually liked “differently abled”, I’ve always heard it used in a highly condescending way by non-disabled people.
Do you find that you want to be admired for using mobility aids? I use either a wheelchair or a walking stick when I’m out. I don’t think I want to be admired for using them, it’d be creepy, but I have a lovely collection of attractive walking sticks and am very happy to have them admired. I hate it when wheelchairs are used to symbolise being unable to do things, when they are enabling tools, as you said. I’ve made an effort to make my wheelchair more functional and attractive, and since the time someone tried to run us over one dark evening, more visible (it was very obviously a hate crime, but it did make me think about how drivers see wheelchairs).
But generally my issue with “differently abled” is that I don’t have any extra powers, I am able to do much less than non-disabled people, and I didn’t get any superpowers to make up for it. You’ve got me thinking about how far this depends on the extent of the disability, and how completely it can be managed by assistive technology. We don’t think of the standard degrees of myopia as a disability any more, for instance, because people can just wear glasses these days. Five hundred years ago, I’d have been considered partially sighted.
Sorry if this is a bit waffly, my brain is mince today!
I remember someone online saying that when people look in horror at her wheelchair and say, "But what happened?" she says, "Sex accident. Worth it, though." I've never had the guts to do that myself.
Wow. You're posting on a piece about ableism to tell us that when you see disabled people out and about, we make you feel like a "horrible garbage person". Have you any idea how rude that is? Go and read up on disability rights, educate yourself rather than expecting disabled people to do the emotional labour of educating you, unpack your guilt and pity and loathing, and don't stop until you have neither those horrible thoughts nor the urge to tell them to disabled people in a comments thread.
A point that may blow your mind: people with an armload of groceries or a baby or something may be disabled too. We're not a separate category. You don't get a cookie for treating us as if we were human and then boasting about it. We are human.
Interesting. We do have a huge terminology problem with so many areas of disability. You're the first person I've encountered who chooses to use the term "differently abled" about themself. I shrank away from the term "disabled" for years, as is common, but now I'm used to it and have found that it makes a lot of things in life easier, usually in terms of being able to access something or convey information quickly. I've never actually liked "differently abled", I've always heard it used in a highly condescending way by non-disabled people.
Do you find that you want to be admired for using mobility aids? I use either a wheelchair or a walking stick when I'm out. I don't think I want to be admired for using them, it'd be creepy, but I have a lovely collection of attractive walking sticks and am very happy to have them admired. I hate it when wheelchairs are used to symbolise being unable to do things, when they are enabling tools, as you said. I've made an effort to make my wheelchair more functional and attractive, and since the time someone tried to run us over one dark evening, more visible (it was very obviously a hate crime, but it did make me think about how drivers see wheelchairs).
But generally my issue with "differently abled" is that I don't have any extra powers, I am able to do much less than non-disabled people, and I didn't get any superpowers to make up for it. You've got me thinking about how far this depends on the extent of the disability, and how completely it can be managed by assistive technology. We don't think of the standard degrees of myopia as a disability any more, for instance, because people can just wear glasses these days. Five hundred years ago, I'd have been considered partially sighted.
Sorry if this is a bit waffly, my brain is mince today!
You've made me realise that I automatically flinch away from even thinking about why people call us "brave", and I suspect you've hit the right reason behind it. At the very least, they are referring to us just living our everyday lives. In other words, living at all.
And I seriously doubt that someone is going to tell me I'm brave because I got into the shower this morning even though I was too ill to, and recovering from that has meant that I have had to cancel my plans of having a friend round to watch TV. They're really not interested in the day to day difficulties of our lives.
Great article.
One of the really awful things about the inspiration porn approach to disability is that disabled people are constantly being told that we are not good enough, that we are not trying hard enough, that we should do more. I have ME/CFS, one of the most debilitating medical conditions in existence. The cardinal feature of it is that it is made worse by over-exertion, and over-exertion can be as little as sitting up in bed. Only no one told me that when I developed it 19 years ago, in my first year at university, so I kept pushing myself. My family told me to stop fussing, and to look at my cousin, who was so much more disabled than me (not that they ever admitted I was disabled) and yet did all these inspiring things, like founding two international pain organisations and being an international table tennis champion and doing a degree while unable to stand! I kept pushing. I spent eight years trying to complete my degree at a university which was flaunting equalities legislation every which way, and which finally tossed me out for being too ill. I put up with social workers telling me I was obviously lazy and liked being looked after, as an excuse for leaving me without enough home care to get fed or washed. I kept pushing. I’m almost entirely bedbound now, and most of the time it’s a huge accomplishment if I manage to get a shower, but no one praises you for that. Today I did manage to shower because I really had to, overdid it, and had to cancel my plans for the day, which were only having a friend round to watch TV.
I do some quilting when I’m up to it, and thankfully I’m good enough that people generally just admire the quilts for what they are, rather than “aren’t you clever for managing to put a needle to fabric!” I get quite a lot of weird praise for hand-sewing which has a similar ring to it, though, even after I explain that I really enjoy hand-sewing and also haven’t been able to learn how to use a sewing machine due to my cognitive problems.
ME knocks 25 years off your life expectancy, but that’s on average and I’m severely affected, so chances are that I won’t live past my forties. If I’d been told that I had a serious illness when I first developed it, if society had been helpful rather than pushing me to work myself to death, if ableism hadn’t minimised the research available so that there was actually treatment or a cure, then chances are I’d be absolutely fine right now and on course to live into my eighties, with all the things people take for granted, such as a job, family, and ability to leave the house whenever I want to. That’s what the inspiration porn culture does to people. And I still think of myself as one of the lucky ones, because I have a great partner, friends and cat, I have a home, I haven’t been one of the ones who’s dead before thirty because of medical neglect.
I was dx with fibromyalgia a few years ago. (I also found out it was genetic shortly after) Im only 25 now. But I feel like my family and everything keep telling me I can work if I just try harder (however I have been on SSI for my autism and bipolar since I became a legal adult)
That sucks, I’m really sorry. Coping with similar but not nearly as bad condition (in my case – Ehlers Danlos Syndrome), and exactly the same kind of fallout from being told to push myself for years (although not as life limiting). Thank you for putting into words why this particular kind of ableism is so awful.
Great article.
One of the really awful things about the inspiration porn approach to disability is that disabled people are constantly being told that we are not good enough, that we are not trying hard enough, that we should do more. I have ME/CFS, one of the most debilitating medical conditions in existence. The cardinal feature of it is that it is made worse by over-exertion, and over-exertion can be as little as sitting up in bed. Only no one told me that when I developed it 19 years ago, in my first year at university, so I kept pushing myself. My family told me to stop fussing, and to look at my cousin, who was so much more disabled than me (not that they ever admitted I was disabled) and yet did all these inspiring things, like founding two international pain organisations and being an international table tennis champion and doing a degree while unable to stand! I kept pushing. I spent eight years trying to complete my degree at a university which was flaunting equalities legislation every which way, and which finally tossed me out for being too ill. I put up with social workers telling me I was obviously lazy and liked being looked after, as an excuse for leaving me without enough home care to get fed or washed. I kept pushing. I'm almost entirely bedbound now, and most of the time it's a huge accomplishment if I manage to get a shower, but no one praises you for that. Today I did manage to shower because I really had to, overdid it, and had to cancel my plans for the day, which were only having a friend round to watch TV.
I do some quilting when I'm up to it, and thankfully I'm good enough that people generally just admire the quilts for what they are, rather than "aren't you clever for managing to put a needle to fabric!" I get quite a lot of weird praise for hand-sewing which has a similar ring to it, though, even after I explain that I really enjoy hand-sewing and also haven't been able to learn how to use a sewing machine due to my cognitive problems.
ME knocks 25 years off your life expectancy, but that's on average and I'm severely affected, so chances are that I won't live past my forties. If I'd been told that I had a serious illness when I first developed it, if society had been helpful rather than pushing me to work myself to death, if ableism hadn't minimised the research available so that there was actually treatment or a cure, then chances are I'd be absolutely fine right now and on course to live into my eighties, with all the things people take for granted, such as a job, family, and ability to leave the house whenever I want to. That's what the inspiration porn culture does to people. And I still think of myself as one of the lucky ones, because I have a great partner, friends and cat, I have a home, I haven't been one of the ones who's dead before thirty because of medical neglect.