"Being disabled in America is like living in a third world country."
“My grandmother always told me: ‘It doesn’t matter if you’re crippled, blind, or crazy. All this world cares about is how you survive. As long as you don’t do drugs or go to jail, you’re gonna be fine.’”
“What do you mean by: ‘The world only cares about how you survive?’”
“The only thing people care about is if you’re working, and if you’re paying your taxes. I worked for the city for six years. During the time that I was working, I was Mr. Matthew Phillips. The moment that I wasn’t able to work anymore, I became a social security number.’”
"Right after I lost vision in my eye, I was so bad at walking that I ran into a girl eating ice cream, and knocked her cone out of her hand. She screamed: ‘Are you blind!?!?’ I turned to her and said: ‘I am blind actually, I’m so sorry, I’ll buy you a new cone.’ And she said: ‘Oh my God! I’m so sorry! Don’t worry! It’s no problem at all! I’ll buy another one.’ So we walked into the ice cream store together, and the clerk said: ‘I heard the whole thing. Ice cream is free.’"
Being the Other does not mean being less.
Move over, pseudo-feminist ad campaigns; This is the real deal.
I am telling you now because the words you say to girls and women with disabilities today will affect how we view ourselves and will affect our futures.
I am telling you now because I want you to stop telling girls and women with disabilities that we’re broken, that we need prayers, that we’re burdens, that it’s okay if someone hurts us because “they’re probably just stressed” from having to “deal” with us, or that we’re pretty “for a girl in a wheelchair.”
I am telling you now because I want you to start telling girls and women with disabilities that we’re beautiful, that we’re wanted, that we’re worthy of love, that you recognize us as sexual beings, that we’re capable, and that no one should ever hurt us no matter what.
I am telling you now.
xoJane: Representations of disability in YA and children’s fiction are woefully lacking, and when they do appear, they’re often bad. What are some of your disability pet peeves — and how should your fellow authors be addressing them?
Duyvis: One of my big pet peeves — and I’ve actually got a longer article about that in the works for Disability in Kidlit — is the magical disabled person. Not the disability superpower, which is a different trope, but the mystical ability. Ooo, this autistic person can detect the way the universe is put together. Ahhhh, that schizophrenic person can communicate with aliens. Wow, this blind person can see the future! Usually the disabled person in question is grossly dehumanized and Othered.
Another pet peeve: the disabled family member who’s just there to make the main character look sympathetic. I think what’s behind both these tropes — and, honestly, most disability tropes — is the fact that many people don’t … get disability. They’ve probably never heard of disability communities or self-advocacy or disability politics. They think disabled characters are mainly interesting for how they can affect the plot or the characters around them, and don’t build disabled characters with the same care and thought as they do other characters.
Wonderful questions. Thanks s.e.!
Yesterday my friend had a panic attack, requested medical assistance, and ended up being placed in psychiatric care without consent… or even water. This is the state of our mental health system. This needs to stop.
this isn’t as pointed as i’d like to make it, but i just want to get it out.
yesterday around 1pm i began to experience a shortness of breath that continued to increase in intensity. deanna had been set to head to her apt in park slope to take care of some things, and i asked her to hold off a bit and watch a show on netflix with me because i wasn’t feeling well.
half an hour later, it was worse. i was convinced my extremities were turning red enough that my veins were becoming blue and they’d turn blue soon, i had a terrible headache, violent dizziness, inability to stand, pounding heart and, again, a shortness of breath i’d never experienced before.
d suggested i call my GP, as she’s a block from my apt. it being saturday and this being greenpoint, my dr’s office was closed. d helped me walk to the emergency clinic on manhattan ave, which, surprise, was also closed.
i began convulsing uncontrollably. after a call to 311 (SHOUT OUT NICK HEXUM lol jk) confirmed the nearest open medical office was far away, deanna called 911.
when the EMR got to us, we were sitting inside a dunkin donuts on manhattan ave, i’d passed out for a brief second and then come to. the EMR woman took me to the ambulance, asked me my medical history and upon finding out i was on an SSRI and had panic attacks asked me fi i was drunk, took my blood pressure, told me i seemed normal and asked me if i wanted to go to the hospital.
at this point, i calmed a bit knowing that my lungs hadn’t collapsed or my heart wasn’t about to explode, but was still really worried because i didn’t feel well, at all, so i said yeah, let’s go. shit, at that point, i figured, i’m hitting my insurance deductible simply by sitting in the ambulance for a second, so let’s really go hogwild.
i was given the choice of two hospitals to go to. the nearest was bellevue. i decided upon that.
we arrived at bellevue, i was checked in without being given any sort of info as to where i was going, and then taken to a long room. upon entering, we were greeted by a police officer and i was put into a corner near him with deanna at my side. suddenly there was a commotion as two other officers were escorting out a large man in handcuffs. an orderly positioned by the door spit in the face of the man in handcuffs as the cops took him out, then shut and locked the door.
i had no idea what the fuck was going on.
i was told to speak to a woman at a window, who asked me about my mental health history and why i’d come. i told her about the shortness of breath, etc. she asked why i hadn’t been treated in the actual medical ward of the hospital, and at this point i realized:
i, suffering from physical ailments, had been checked in to the psychiatric ward of bellevue hospital without any information and without having offered any consent.
the woman informed me that, because i’d been brought by emergency medial responders to the ward, i was officially in their custody and unable to act under my own accord until i was deemed by them fit to leave. they told deanna she could go, because, and i quote, “this isn’t going to be fun. this is going to be in the top ten worst experiences of your life.”
my shoes, phone, id, credit cards and keys were taken. i was put in a room and told to wait.
after about an hour of reading and re-reading the booklet on “patients rights” i was given which seemed to apply mostly to expectant mothers and the elderly, i was taken into a room and asked a series of form questions by a smiling older gentleman. was i suicidal? was i on any drugs? did i intend to harm anyone else?
after giving him answers, he leaned forward. “i can’t make any promises”, he said, winking at me, “but you should be ok. it’s gonna be a long wait, and it’s not going to be fun, but hold tight.”
i was then check into the actual psychiatric ward.
upon entering the locked, guarded facility, a guard asked me how i was. i said i was thirsty, and asked for some water. he left and returned with a food tray of chicken, rice and milk. i told him i wasn’t hungry, and again asked simply for some water. he gave me the tray, shrugged, and walked away. i didn’t touch the tray. half an hour later the guard came back. “you’re not gonna eat? this is IT. this is all you get” he warned me. i didn’t know what to say, so i let him take the tray.
i sat in a room with 10 other male wards, only one other of which wore street clothes—and he was also the only one not in a bed, and also the only other non-black ward.
there was a small tv playing how i met your mother re-runs. a man in a bed wearing nothing but sweatpants was the only bedded ward paying attention, and he occasionally screamed at the tv “i’d rape that chink bitch!” or “i’d rape that nigger bitch!” or “i’d rape that cracker bitch!”
a really, really muscular ward got out of his bed eventually and came over to me. at this point, there were no visible guards. (through eavesdropping on conversations, i would later learn all the guards and most of the staff were in a lounge watching the world cup.) “if you stay the night, i’m gonna make you my little fuckin toy” he said to me, smiling. he then wandered into a corner, sat down, and didn’t move for hours until a nurse came to take him somewhere.
at this point, i had been at bellevue for two hours. no one had told me what was going on or explained anything to me.
a guard came through. “yo when’s SNACKS” a ward called from a bed. “9:30” the guard answered “and then y’all going to BED”
it was past 6pm. i had no idea what was going on. 9:30 seemed not that far off, and it dawned on me:
i may be here overnight. and i can’t check myself out. and i don’t know what the fuck is going on.
i again asked the guard for water, and he simply walked away. “they like that, though” the guy who had been screaming about rape to the tv said to me. “don’t take it personal.”
the guy who’d threatened to rape me came through and asked the guard if he could take a shower. the guard ignored him, and he climbed back into his cot.
"GOOOOOAAALLLLL" a cheer rang out from somewhere.
it was 8pm.
eventually i was taken into a back room, asked the same questions i’d been asked before, told that not being able to breathe was my suffering a larger panic attack than i was used to, that i should’ve taken more of my anti-panic med and that i need to take more prozac and get a therapist and that they’d call deanna to make sure i wasn’t a threat and then they’d let me go.
i had still received no actual medical attention or water. and i’d seen no one really attend to anyone else. a room full of mentally ill patients laying next to each other, completely ignored.
at 9pm the head of psych at bellevue came to talk to me in the room with the other patients and a social worker. “you aren’t like these guys” she said, pointing to the room. “you’re fine. just get a therapist and take your meds”. she left. i was released. i asked to use the phone to call deanna and that was refused. i got my stuff back, got my shoes from the guard who told me “it’s a good thing you aren’t here overnight, man” and then let out on my own accord.
nearly six hours after i’d called 911 for a medical emergency, i was in a cab on the way home from bellevue with a formal recommendation from the hospital in my pocket to “take more prozac” and “relax for a couple of days”.
and i assure you that’s more than the long-term wards were receiving.
white privilege is being able to present well enough to get out of bellevue in under 24 hours with your dignity intact.
Anonymous said: We need diverse books because people still think that curing a disabled character is a HAPPY ENDING.
Art commission for Maria, featuring her sweet self & her kitties! ♥
"Not to be all ‘vulnerable’," we’d say with air quotes and then relay some vague truth about our lives or feelings. It was a tactic to avoid the messy emotions roiling beneath our skin, mostly asking, "Am I enough?"…
I wanted so much to like this article, but I don’t think the author is “there” yet re: disability. Because, when you have statements like these…
Perspective gives us empathy. Before knowing Natalie, I had less compassion for people with disabilities or chronic conditions. As an able-bodied woman I’d made assumptions that their disability defined them or that they were always in pain or needed help. It’s so one-dimensional and limiting.
Followed by statements like these…
When I wrote my memoir, I finally believed I was enough (taking a hard look at your life and the choices you’ve made has a way of doing that). It took Natalie over 30 years to accept that her body was beautiful despite its limitations.
You talk about “limitations” due to a disability being a social construct… and then reinforce that social construct by drawing a parallel between not being enough and having “limitations” due to disability. Not cool!