Saying “that’s karma” about people having disabilities or getting diseases is very ableist.
TW + CW: ableism
I saw two reddit posts today
1. A six year old girl gets a agressive form of cancer and may die.
2. A 11 year old girl gets paralyzed in a tragic accident
So what were people’s reactions??
Saying that’s karma because the parents, kids or someone tbe kid knows did something “ bad ” so people claiming the kids “ deserved ” such things..
I see this a lot. People claiming disabilities and illnesses are “ deserved ” and “ karma” because the person or someone they know did something bad…
Like it’s so messed up to say that such things are deserved and karma.
But also it has some really f×cked up underlying implications that people truly believe those with disabilities or illnesses are bad people that deserved it or in somehow karma.
And you know, I don’t feel all that self conscious about wading into this discourse. I post positivity and practical advice stuff about mobility aids all the time. I write image descriptions — not all the time, but 100% of the time on the posts I make that require them, and often on other people’s posts. I share posts about sign language. I share posts about representing blind people in fiction. I share a lot of info about a variety of disabilities, most of which are physical. I got a track record of speaking up about physical disability challenges that I don’t personally experience. So anyone who’s going to assume I don’t know anything about or don’t care about wheelchair stuff or whatever because of my stance on this? Well they haven’t been following my blog I guess.
While I don’t use a mobility aid most of the time and don’t have the challenges that for instance a full time wheelchair user does, I am physically disabled and I do have major accessibility challenges — including ones a wheelchair user who doesn’t have spoon issues wouldn’t have. And I’ve got considerable experience with mental illness. I can speak to both because I’ve fucking experienced both.
They are different experiences with different challenges. And I gotta say it’s dramatically easier for me to take my physical issues seriously and get other people to take them seriously than it ever has been for mental illness.
It’s incredibly rude and fucked up and bad theory to go “well physically disabled people can speak authoritatively on how ableism towards mental illness compares to physical disability, even physically disabled people with little or no experience of mental illness, but not if it’s the other way around.”
I’ll die on this hill. I’ve been suicidal often enough that I figure I owe that to my community.
basically brains make no sense and I am Angry. Theres this syndrom called Anosognosia where a patient who can be seemingly sane and intelligent is unaware of their physical disability, even with something undeniable like paralysis. A doctor may ask the paralysed patient if she is able to move her arm, to which she would say yes. If he then asked her to touch something with her paralysed arm, she may employ excuses like “my arm is feeling tired today” or even “I don’t appreciate taking orders”.
And this is not just a simple case of denial, the patient genuinely believes what she is saying. However, the weird bit comes in here: If the doctor injects a syringe of ice-cold water into her left ear canal, her eyes start to jerk around in a movement called nystagmus and when asked again about her arm, she will calmly admit it is paralysed.
IT GETS WEIRDER THOUGH. If you were to go to the same patient the next day and ask her about the appointment 24 hours ago, she will tell you that she told the doctor she was fine, thereby completely denying her earlier admission of paralysis. Almost as if she had reconstructed that memory entirely.
A photo posted by steelwheels76 (@steelwheels76) on
Caption from steelwheels76 on Instagram:
One of my hobbies is #woodcarving . I kinda have major loss of function in my hands, which complicates things. Most of my hobbies require dexterity and the use of tools and/or knives - painting, sketching, cooking, gaming. Sometimes I think I do these things out of pure spite.
did the preliminary research, it does not appear to be a scam, the parent organization SciAccess grew out of conversations at scientific conferences about equity and inclusion in STEM. Both ZERO-G social media pages have confirmed the partnership
“The goal of this mission is to bring together the largest and most diverse group of disabled crew members in a weightless environment, with the hopes to learn how to adapt and make accessible outer-space travel for disabled space explorers, scientists, and researchers. The Mission: AstroAccess parabolic flight is scheduled to take place on October 17, 2021, launching from Long Beach, California.
“Our mission is to change outer space and change the world. If you are a disabled person who is confident, enthusiastic, playful, and literally willing to float upside down to change the future, we are looking for you!” says Dr. Sheri Wells-Jensen, Associate Professor of Linguistics at Bowling Green State University.”
There is an impressive team behind AstroAccess, you can find the full list on their site here.
Here’s a couple of those bios.
“Anna Voelker is the founder and Executive Director of the SciAccess Initiative, an international program dedicated to advancing disability inclusion in STEM. Through SciAccess, they lead numerous science inclusion initiatives, including an annual conference launched by their receipt of the 2018 Ohio State University President’s Prize. Anna specializes in accessible space science outreach for diverse learners and has worked extensively with blind and low vision students using 3D printing and data sonification. In June of 2021, Anna joined the Aspen Science Center as its new Executive Director. Anna is a 2018 Brooke Owens Fellow and previously worked at NASA Kennedy, NASA Goddard, the Space Telescope Science Institute, the International Astronomical Union’s Office of Astronomy for Development, and the Aerospace Corporation.”
“Eric Ingram is the Founder and CEO of SCOUT Inc., a company de-risking space operations with sensor suites that enable spacecraft to see and understand the area around them. He also currently serves on the Board of Directors for the Space Frontier Foundation. He was previously an Aerospace Engineer for the Licensing and Evaluation Division of the FAA’s Office of Commercial Space Transportation, where he gained expertise in the regulatory environment. Prior to this, Eric was an engineer for Deep Space Industries, where he designed cubesat subsystems for testbed missions. Outside of the space industry, Eric previously served as the President of the United States Wheelchair Rugby Association, leading the USWRA to its largest budget surplus in its 30+ year history. Eric has competed in the sport of wheelchair rugby for 15+ years, competing domestically for several club teams, and internationally with the US Developmental team. Eric holds a Bachelor of Science in Physics from Old Dominion University, most of a Master of Science in Electrical Engineering from the University of Houston, a sport pilot certificate, and is working towards SCUBA certification.”
“Dr. Sheri Wells-Jensen is an associate professor of linguistics at Bowling Green State University in Bowling Green, Ohio. Along with various aspects of astrobiology, her research interests include social aspects of human colonization, disability, the relationship between language, embodiment and thought, language evolution and ways in which alternative sensory inputs could influence the evolution of scientific thought. She is on the board of SOCIA (Social and Conceptual Issues in Astrobiology and METI (Messaging Extraterrestrial Intelligence) International.”
“Dr Jamie L. Molaro is the Executive Director of Disabled for Accessibility in Space (DIAS). Dr. Molaro is a planetary scientist at the Planetary Science Institute and located geographically with host institution the Caltech/Jet Propulsion Laboratory. Her research focuses on understanding the way that rocky and icy materials fracture and break down, driving landscape evolution on asteroids, comets, and moons. She is also a team member on NASA’s OSIRIS-REx mission to retrieve a sample of rock from an asteroid surface. Service is an integral part of Molaro’s career, including organizing and running exhibitions and workshops on science and data-driven art, and leading DAIS (Disabled for Accessibility in Space). DAIS is a peer networking, support, and advocacy group for disabled and chronically ill people in space science and related fields and professions, and proud collaborator in Mission: AstroAccess.”
does anyone know where i can get a cane that doesn’t look like something my great uncle would use? ya know, the boring grey ones that just scream “old person” ? or should i get a boring grey one and cover it in googly eyes?
This story would probably be classified as an everyday micro aggression, but micro aggressions can be huge, blatant, discriminatory and very, very public.
I’m an artist by trade and have been since my late teens (I’m 34 now), I’ve lived in Vancouver since 2007 and I’ve been to the Vancouver Art Gallery more times than I can actually count (also, I have memory problems so that’s probably a major reason). I’ve been physically disabled for years, but due to internalized ableism among many other things I wasn’t able to admit it to myself until I had a stroke in late 2013.
That’s enough backstory. Today. Today, I use a wheelchair. I haven’t been to the Vancouver Art Gallery since I started using a wheelchair (although I have been many times with my walking cane and knew a wheelchair was probably inevitable due to the fact that I suffer from progressive conditions and so I’ve been mentally making notes of their wheelchair accessibility for a long time). I’ve seen several other visibly disabled people visiting the gallery in the past, and a number of wheelchair users. The gallery has fully accessible entrances, shop, floors, lifts - even a street-level dedicated 2 hour disabled spot next to the drop off zone right outside their doors.
There are some things that are less accessible - in order to gain access to the café you have to ask a member of staff to take you to the service elevator and once you get up there you better be ready for a fuss because someone will need to move tables AND chairs around to accommodate your wheelchair. The disabled bathroom (on the ground floor) also requires that you physically go around the corner to the security office and ask them to open the door for you (it is automatic - YAY - but locked). Some art plinths are too high to really see what’s on them from a wheelchair.
Still, it’s a ‘very old’ building (for Vancouver, mind) - it used to be the courthouse and the main building was completed in 1905. This was obviously long before it was believed disabled people should ever be seen outside of institutions, so they’re doing very well considering we also have no Canadians with Disabilities Act.
I’ve made mental notes of all of these things, so I thought I was well prepared to zip along in my tiny manual wheelchair and enjoy some fine art.
First of all, let me tell you. I’ve been used to having art gallery security follow my every move with their sharp little eyes and turny little heads, having walked around with a mobile phone in my hand or my camera around my neck; clearly worried I’m going to break that archaic rule of no photographs in some exhibitions. Today, both of those things were tucked away. From the moment I wheeled past the (very friendly) doorman into the galleries the security staff’s eyes were on me. They followed my every move, even stood watching me while I sat still and read some of the large texts on the walls. Obviously they were terrified I was suddenly going to lose control of my little manual wheelchair and go zooming around crashing into rare paintings sculptures all willy-nilly.
“Whatever” I thought “I’m used to this attention”. (I’ve somehow always made security staff suspicious of me - whether in an art gallery or simply at the drug store, it’s the same story; followed everywhere). I have to laugh because at this point I probably sound a wee bit paranoid, but believe me. This is my life.
Having consumed and enjoyed many classic Canadian paintings I make my way to the lifts up to the second floor to see Korean artist, Lee Bul’s exhibit. I am most excited about this, having seen some of her drawings and models online before. A giant room of her drawings spin around me, I take them in with glee, thoroughly enjoying them, and zip round the corner into the room with her latest work; large interactive sculptures made of mirrored shards and a mirrored floor. Several of these sculptures you pass through and experience the shapes and reflections, giving the viewer a chance to gain their own highly personalized experience of the piece. I patiently wait my turn by the first sculpture as I’m excited that it is clearly more than large enough for me and my tiny wheelchair. (I’m very petite and so a manual wheelchair fitted to dimensions I need is luckily very compact - I take up little more room than a person sitting in a compact office chair).
The sculpture clears of the couple of people in front of me (I’d rather wait a turn than cram in there with them, and thus just see my own reflections and in turn ‘reflect’ on my solitary existence and narcissism!). I take a couple of photos (photos are allowed on this floor, as they often are with these kinds of artists and exhibits - the large room has four large sculptures and is filled with people taking selfies).
Suddenly, out of nowhere a member of the security staff has appeared in front of me, bending down with hands on knees (wheelchair using friends, you know the shudderingly condescending stance I refer to; as if I were a small child that needs to learn a lesson). I sweat a little, as is my usual response to the sudden appearance of security staff. I’m fully expecting a ‘no photos please’, even though I know that photos are allowed - I always check. But what comes out of her mouth is this, “Wheelchairs can’t come through here.” No politeness, no niceties, no pleases, no addressing me as a person. I am object. She says it very loudly, likely because I’m obviously physically disabled and either I won’t understand her or I won’t hear her - maybe both!
I am so utterly stunned I just say “WOW OKAY”, turn myself around so that I’m facing away from her and wheel myself out; past the crowd of people that were behind me waiting for their turn. I wheel around the sculpture (which I will note had no more room than inside the sculpture), proclaim loudly to my significant other (‘M’) “Apparently I’m not allowed through there.”, in my best (but shaky) Cross British Voice. He just asks “What? Why?”, so I point over my shoulder and state “SHE SAYS SO”.
At this moment the utter humiliation of the situation sets in completely and I have no choice but to wheel myself away as fast as I can into a corner, behind all of the sculptures and hide. I have no idea if I want to burst into Loud Ugly Tears or spontaneously combust with the very rage of the entire thing. I should state here that I have a number of social and sensory processing issues that all feed into some terrible anxieties; the worst of which is probably Confrontation with Strangers. As a disabled person I’m faced with this reality almost every time I leave my house, even if it’s imperceptible to others.
I stare at the sculpture that’s in front of me with its flashing lights and its surreally appropriate words and blink back hot tears. I grip so tightly on the grip bars of my wheels that I dislocate a knuckle. The bile that regularly burns my stomach and esophagus has turned itself up to 11 and I just want to pop out of existence with a little ‘pffft’ and cartoon dashes in my absence. I wait what seems an impossibly long time, watching the sign on this sculpture flash on and off, off and on. I can’t get any coherent words to line up with my Secondary Voice in my head, just the pictures that my thoughts often exist in are left behind, reeling and spinning and floating around. I’m dizzier than usual. I am outraged, I am deeply hurt, I am horrifically humiliated. I am a young disabled person who appears even younger than she actually is. I wear Doc Martens, biker jeans and have tattoos and extremely short hair. Who the fuck cares.
I stare at every single interactive sculpture in this giant cave of a room, I look down at the mirrored floor, scratched from thousands of feet marks, and hopefully a few wheel marks too. I see my wavy, wobbly, swaying face. I mouth the words ‘None of this is for me.”
M finally rounds the corner of the big, black mountain of an interactive sculpture I chose to hide behind. He tells me he’s spoken to the security manager, because the lady who told me I couldn’t wheel through the sculpture didn’t know anything about official policy. The manager has gone away to check whether this is ‘in writing’ or not, but he generally thinks it’s probably a ‘common sense’ rule. I ramble, perhaps incoherently about why this is such an outrage and why it was handled in exactly the wrong way, and why I just wanted the proverbial ground to swallow me until the manager returns to the floor.
The manager was good. Clearly all about customer service and smoothing things over. He introduces himself, states that no, this isn’t a written policy and that the security staff clearly have a difficult job of making sure everyone enjoys the art safely and respectfully and that yes this clearly wasn’t handled in the best way. Miraculously (I don’t know how) I take a deep breath, pull myself together, and words start eloquently flowing from my mouth of their own accord. “Yes”, I say, “but I just want you to know that the way I was spoken to today was rude and utterly humiliating. It is absolutely discrimination.” He agrees, apologizes and says that yes, he took a look at all of the interactive sculptures and he agrees, I would have no problem fitting in any of them and I should feel free to enjoy them as anyone else. M tells him how he hopes he can spread the word and educate his staff on how to handle this situation in the future and again, somehow eloquently my mouth opens and I state “My wheelchair is a part of my body, I know its boundaries just as anyone does, and have control over it just as much as any other person in here”. He didn’t once crouch down to talk to me, didn’t once raise his voice, he shook my hand, he spoke directly to me, made promises and apologized. We will still be writing in to follow up.
Was the situation rectified before I left? Mostly, yes. Was the security manager good at his job and the ultimate smooth talker? Absolutely. Did he understand how to address a disabled person and speak to them as he would anyone else. Definitely.
I have a number of other things I need to have you listen to before I stick these aching, swollen fingers into a heat pack and give them a rest.
This should never have happened. First off, there was so much room for me in there, remember that I was able to turn myself around, with ease, and leave. Yes yes, I understand that I could have crashed and damaged the art. I am not ignorant (something the security staffer clearly assumed I was). But here’s the thing, so could have any ambulatory person that walked through there. Anyone could trip, stumble, turn around too fast, be too wrapped up in taking selfies with friends, run through in a wild manner - I could go on. Me using a wheelchair does not make me any more likely to damage the art than any of the other hundreds of people that will go through it while it’s on display. This is a risk that both the artist and gallery take into consideration when creating an interactive sculpture. Had I in fact been too large to fit through there (as could have any ambulatory person), she could have easily said, in a quiet professional and friendly tone, something along the lines of “I don’t think you’ll fit through this next bit, would you like me to guide you out of here?” Yes these people have pretty crappy jobs of telling people NO all day, but I wasn’t breaking any rules or doing anything other than using wheels to move around instead of legs.
So, I wasn’t actually able to go back and enjoy the sculptures I’d been kicked out of. How could I? That experience was thoroughly ruined. I was still reeling from the whole thing, hot coals burning in my guts, tears burning in my eyes and the memory of how the group of people behind me backed away and averted their eyes as I stalked out of there (yes you can stalk in a wheelchair, believe me). I am very awful at shrugging things off and moving on. Really it’s one of the biggest things I struggle with mentally, but I am trying my absolute hardest to practice this whenever I can. Today, I actually did manage it to some degree. I turned my back on the shiny interactive sculptures, and slowly and deeply took in Lee Bul’s smaller, darker, intenser models. I am a dark intense person anyway, so this probably suited me. I sought out the quiet corners of the gallery and revelled in the distant sounds, the beautiful art that nourishes my brain meat and tried my damnedest to reset my sensory systems so that I could continue on and enjoy my day without even a meltdown.
Here’s the crux though. Why, above anything else these things shouldn’t happen. I will never be able to go back to the Vancouver Art Gallery, or any art gallery, for that matter, without this incident burned into my highly detailed visual memory. Every time I visit a gallery this will be on my mind: Am I allowed to be here? Is this art for me?
I am a person. Disabled people are people. I am an adult; disabled adults are still adults. Talk to me like a person and an adult. Include me in your decision over whether my body and my mobility aids are suitable for something. Stop watching me like a hawk while neglecting to watch other patrons. Do not exclude me because you think you know better about my ability to control myself or my mobility aids than I do.
Have some bloody compassion. Disabled people are people.
All aggressions are harm. Many actions have lasting consequences long past your part in it.
Swimming went really well! I spent well over an hour in the pool and it was super helpful. Just being able to move my body and not be weighed down so much by gravity was amazing.
The pool accessibility was pretty decent too. The changing table and hoist worked well, and they had one of the best poolside wheelchairs I’ve come across - a lot of them don’t have a tall back which makes them hard to use but this one did! My carer said it was really easy to push as well.
Unfortunately I seem to have injured myself. I think it was trying to get back into the pool wheelchair, but it could be general overuse. I’m also feeling quite nauseous so I’ve cancelled today’s commitments. I always feel guilty when I have to cancel something less fun because I’ve exhausted/ hurt myself doing something fun, but I’m trying to remind myself that I deserve to do fun things.
someone local to me wrote an article about how “wheelchairs” are treated better than other physically disabled people and the irony of her reducing wheelchair users to our mobility aids while complaining about how good we supposedly get treated is definitely something
I’ve decided I’m going to the swimming pool next week! If it goes well I’m going to try and make it a routine. My mental health is suffering at the moment and I can see it going downhill very quickly if I don’t get on top of it soon. Exercising within my limits has been incredibly helpful in the past and because of my mobility impairments, pain and injury risk it’s very hard for me to exercise in other ways, so swimming pool it is.
It should also be really good for me physically to use the muscles I still can and take the pressure off my joints for a bit, but honestly my mental health is the most pressing thing right now.
I am worried about covid, but I’m going to go in the evening when it’s a bit quieter. Hopefully the benefits outweigh the risks.
Very thankful for the online disability community today. Turns out there was a very important step to resetting the circuit breaker missing from the instruction manual which made me think that something more serious had happened.
Luckily someone online had experienced the same problem and posted the solution and we were able to get my chair back up and running pretty quickly.
I get the whole Mad Pride/Disability Pride thing and I have no issue with it existing. I’m really glad that it’s there for people who need it!!! /gen
I’m just really tired of having it forced on me.
Anyone can opt in or out of any community. I’m not saying that Mad Pride and Disability Pride don’t exist, or that the communities aren’t real, just that I choose not to participate. And people get mad at me for that.
So no, I’m not proud to be disabled, neurodivergent, or mentally ill.
the world doesn’t want to accommodate me. i have quite the intersection of disabilities – from affective issues to selective amnesia to physical limitations – and some people don’t want to give me what i need in order to function at the same level as them.
so today i am angry because i am an intelligent, talented, and compassionate human being who could do a lot of good for the world, and i deserve to succeed.
and if you’re a disabled person struggling to get accommodations, remember that you are too.
okay once again I’m about broke. I’ve got bills coming up (insurance, phone, internet) and I need to get like. groceries. if you’re not familiar, I’ve got a back problem that is preventing me from working and greatly effects my mobility. I’m queer and struggling, and I totally understand if you don’t have the spare cash, if you can help me by passing this around I appreciate it.
