A Call for Solidarity with the Community of Ferguson, Missouri |
For the last few days, like many other disenfranchised communities across the country, the disability community has watched what is happening in Ferguson, Missouri. Our hearts are heavy with sorrow, anger, and fear for what is happening to individuals, families, and communities so similar to our own.
Even following the release of the name of the police officer who was ultimately responsible for Michael Brown’s death, we must still come to terms with the tragedy itself. This is a tragedy not just because of the precious loss of life or the actions of one person, but is also a tragedy that is caused by the criminalization and dehumanization of our own citizens. It is a tragedy not only for Michael Brown’s family but for the entire country.
Perhaps, it is more honest to for us to say, it is yet another tragedy that has become all too common for communities viewed as “other” to the American majority – young men of color, people with disabilities, lgbt individuals.
“They didn’t comply.” They were “bad kids.” “They were being belligerent.” “They looked suspicious.”
These statements that have no real discernable meaning often warrant a death sentence for the individuals upon which the observations are based.
- Eric Garner, 43, who had asthma, was pulled to the sidewalk onto his chest and restrained in a chokehold by an officer. The medical examiner cited that Garner’s cause of death was “compression of neck (choke hold), compression of chest and prone positioning during physical restraint by police.” (New York)
- Robert Ethan Saylor, 26, who had Down syndrome, went to see a movie and refused to leave. It was customary for Saylor to see a movie twice. Deputies put Saylor on the floor, held him down, and handcuffed him with such force that he suffered a fracture in his throat cartilage and died of asphyxiation. (Maryland)
- Keith Vidal, 18, who had schizophrenia, was tasered, then shot, and killed when his family called law enforcement for help calming their son down. Vidal’s stepfather said, “”They killed my son in cold blood. We called for help, and they killed my son.” (North Carolina)
- Gilberto Powell, 22, who has Down Syndrome, was beaten by police outside his home and was left with horrible bruises and scars on his face when law enforcement suspected he was carrying a weapon and tried to pat Powell down. Powell did not understand and ran. The suspicious bulge in his pants? It was a colostomy bag. (Florida)
- Barry Montgomery, 29, who has schizophrenia, Tourette’s syndrome, and is non-verbal ,was harassed and then beaten and tasered for 25 minutes by sheriff officers when he was confronted about the smell of marijuana in his general area, and Montgomery did not respond. Montgomery sustained massive permanent injuries. (California)
Eric Garner, Ethan Saylor, Keith Vidal, Gilberto Powell, and Barry Montgomery – these are the names of a few people with disabilities who were brutally injured and killed because of who they are. There are many who were lost before them, and there are certainly others whose names we will never know because the brutality against them was never reported.
When a system that is designed to protect and serve is fueled by fear and anger, that is not merely a surmountable problem. It is a catastrophic failure of the system, and it demands transformation. Such a failure represents a lack of leadership, a corruption of institutions, and a distressing willingness to purposely and violently silence the voices of entire communities marked as different, non-compliant, and suspicious.
Perhaps what is most disconcerting however, is that the failure to support our young men of color, who are gay who have disabilities, who are poor, is not just to be laid at the feet of an intolerant police force, self-interested politicos or even a sensational hungry media. The fault lies in our own hearts.We have not taken enough of the responsibility to manage and maintain the values that we believe are right. We have been complacent in our engagement and been comfortable enough to declare that the problems are with other people. We have allowed ourselves to be separated into tiny groups of associated individuals rather than communities participating in a collective conversation about the state, direction and makeup of our society.
We have allowed problems of marginalization, exclusion, inaccessibility, dissemination, sexism and bigotry — problems that affect us all — to instead be addressed by a few, and have been content to say that it is a disability problem, or a race problem or gender problem or sexuality problem rather than admit that it is a problem for all of us. As members of a community that supports justice and inclusion we do not have the luxury to stand by when injustice is blatantly taking place in any form, and nor should we be satisfied to wait for other communities to ask for our help.
Civil rights, respect, and justice are due to all. We will not remain silent. The disability community, like the LGBT community, and so many others around the country, stands with the family of Michael Brown and with the people of Ferguson, Missouri. We call on the national and local media to be responsible and steadfast in their coverage of this story and others like it. We call on policy makers on all levels of American government not to shrink from action, and we are deeply grateful to Attorney General Eric Holder and the Department of Justice for their immediate commitment to a thorough investigation. Let us all come together, not only to rally and mourn but also to plan for action and collaboration.
Lastly, we specifically invoke the words of Justin Dart in “a call for solidarity among all who love justice, all who love life, to create a revolution that will empower every single human being to govern his or her life, to govern the society and to be fully productive of life quality for self and for all.”
The Lead On Network
Autistic Self Advocacy Network
Ollibean
Washington Metro Disabled Students Collective
Queerability
Ramp Your Voice!
Helping Educate to Advance the Rights of the Deaf (HEARD)
If you are a disability organization and interested in signing on to this statement, please contact us at LeadOnUpdate@gmail.com. If you are an individual with a disability who cares about this issue and supports this statement please share it widely. Also, we know you have your own thoughts to express and urge you to do so in the comments. We will not remain silent! The events of the last week touch us all.
We are honored to join leadonupdate, queerability, and others in signing on to this letter of solidarity with the Community of Ferguson, MO. Not only do we face related struggles, but there are undoubtedly Autistics in Ferguson, and definitely Autistics of Color who face the issues being struggled with and protested against in Ferguson across the nation and the world.
If you are a disability org, please join us in signing on to this letter. Instructions are at the end of the text.
Tag: disability
Things You Can do to Help Disabled People That Don’t Cost A Cent
- Do not talk about an obviously disabled person in front of them as if they can’t hear or understand you.
- Do not talk to a disabled person’s companion instead of them.
- Ask permission before touching people, or their wheelchairs/other equipment. Even if you want to help.
- Ask disabled people about their lives and really listen to their answers. (Within reason. Asking people personal questions about their sex lives, for example, is rude unless you are very close to them and they’ve communicated they’re OK with that).
- Listen to what they say whether they are speaking, writing, typing, using text to speech, using a letterboard, using PECS, gesturing, using sign language, or using any other form of communication. People who cannot speak can still communicate.
- Stand up for people you see getting bullied.
- Understand that disabled people don’t just need friends, they can be friends, too.
- Every public place does not need to have loud, blaring music and TVs with flashing screens.
- If you blog, put bright, flashing images that can trigger seizures under a cut so that people with seizures can avoid looking at them.
- If a job can possibly be done without a person driving, don’t require candidates to drive/have a driver’s license, and don’t interview candidates and then reject them because they don’t drive.
- When talking to someone who has trouble speaking or stutters, and takes a long time to speak, wait for them to answer. Don’t keep repeating the question or pressuring them. Yes, if you’re like me and your mind is going really fast and you forget what people are saying if they take too long, it can be hard to be patient. Do it anyway.
- If you are talking to a deaf person, make it easier for them to lip-read by facing towards them while looking at them, and not covering your mouth with your hands.
- If you are talking to someone with hearing impairment or auditory processing disorder, it is more helpful to slow down or rephrase what you’re saying than to just speak more loudly.
- Some disabled people have difficulty understanding nonliteral language such as metaphors and idioms (e.g., “a stitch in time saves nine”). If you’re talking to someone like this, try explaining what you mean by these figures of speech, or just not using them.
- Recognize that failure to make eye contact does not mean someone is lying to you. It may be uncomfortable for them.
- Recognize that unwillingness to go out to loud, crowded bars does not mean someone isn’t interested in socializing with you.
- If people have difficulty spelling, or using the appropriate jargon/terminology for your social group, do not assume they’re stupid. You may need to paraphrase some “jargon” for them.
- Recognize that a person can need time alone and it doesn’t mean they don’t like you or want to be with you. It’s just something they need so they can function at their best.
- If a person does not recognize you, do not assume they don’t care about you. They may be face-blind.
- If a person does not remember your birthday (or other major names, numbers, or dates) do not assume they don’t care about you. They may simply have a bad memory.
- Understand that a disabled person’s talents, however esoteric, are real, not unimportant “splinter skills.”
- Colorblindness affects more than just knowing what color something is. To a colorblind person, colors that they can’t see will look the same if they have the same degree of lightness/darkness. That means that to a red-green colorblind person, a red rose on a green background will blend in instead of contrast starkly, and the Chicago CTA El map will be difficult to understand. Understand that something that stands out to you and seems obvious may literally not be visible to a colorblind person.
- Accept stimming.
- Don’t tell them “but you look so normal.” But, if they accomplish something you know they were working really hard to do, it’s great to compliment them on it.
- Understand that a person can be working incredibly hard to do something and may still not perform as well as you’d like them to, as well as the average person would, or as well as the situation demands.
- If someone has a major medical problem, disability, or chronic illness, then just eating some special healthy diet or exercising more isn’t going to cure it. It might help, it might hurt, it might do nothing, but they’ve probably heard it before, and it’s none of your business in any case.
- A person with OCD knows that checking or counting or whatever compulsion they perform won’t really prevent disaster from happening, it’s just a compulsion. That doesn’t stop them from feeling the need to do it anyway. A person with anxiety may know at least some of their fears are irrational or unlikely to occur. That doesn’t stop them from feeling anxious. A person with trichotillomania may know it hurts them to pull out their hair or pick at their skin, but they have trouble stopping themselves anyway. A depressed person may know they would feel better if they got out of their house and talked to people, but that doesn’t make them feel any more up to doing those things. A person who hallucinates may know the hallucinations aren’t real, but that doesn’t make them go away or feel less upsetting. You see the pattern? You can’t cure people with mental illnesses by telling them they’re being irrational or hurting themselves. If it were that easy, they’d have cured themselves already.
- Do not tell a person with ADHD or mental illness that they should not be taking medication. This is a personal decision. Furthermore, since medications have wide-ranging effects on people’s bodies and minds and often unpleasant side effects, most people taking medications have thought through the issue, done a cost-benefit analysis, and decided that the ability to function better is worth it. Their decision should be respected.
- A disabled person with intellectual disability who has the academic or IQ abilities of, say, a seven year old does not actually have the mind of a seven year old. They have different life experiences, needs, stages of life, bodies, and so on.
- If a disabled person is having a meltdown, they are not angry, they are terrified. They’re not throwing a tantrum or being aggressive, they have gone into fight or flight. The best thing you can do is remain calm yourself and help them calm down. It may help to keep your distance, keep your voice low and calm, let them retreat to a safe place if they know to do that, or remind them to do so if they don’t. Reasoning with them won’t work well because they’re unlikely to be able to hear and understand you. The worst thing you can do is start yelling yourself, threatening them, be violent to them, cut off their escape route, or get right up in their personal space.
Other ideas? Please reblog and add more. The more the merrier.
Here’s Hawkeye holding up the ASL sign for ‘I love you’ while he looks back over his shoulder.
I love Hawkeye and can’t wait to see more of him in the next Avenger’s movie. I also am looking forward to the Hawkeye comic that is suppose to be coming out featuring the use of ASL, I hope it comes out soon we’ve been patiently waiting.
If you like the image and have some disposable income consider supporting the artist and buying a print or card or sticker here: http://www.redbubble.com/people/mjfitz/works/12270819-hawk-love
EEEEE, this is so cute!
And the ASL issue of Hawkeye comes out on the 30th, iirc. ROCK THAT ASL, BARTON!
Autism language politics and history
Some people emphatically prefer to be called people with autism. Others get very offended. Some people empathically prefer to be called autistic people. Others get very offended. There are reasons for all of that.
They have to do with the history of the intellectual and developmental disability community, the autism parent community, and the specific autistic self advocacy community.
For intellectual and developmental disability:
- Most self advocates have a very strong preference for person-first language
- Person-first language in this concept means “I am a PERSON, and I am not going to allow you to treat me as a disability case study, nor am I going to tolerate your diagnostic overshadowing.”
Autism is a developmental disability. There is a highly visible and destructive community of parents who consider themselves to be afflicted with their child’s autism. There is an autistic self advocacy community that developed in part specifically due to the need to counteract the harm being done by autism parents. The language someone prefers will often depend on which of these facts seems most important at a given time.
Regarding developmental disability.
- Folks who are primarily involved in the IDD self advocacy community usually prefer to be called people with autism
- This is for the same reasons people with any sort of developmental disability usually prefer person first language
- In that context, “person with autism” means “I am a PERSON, and you are not going to treat me like an autistic specimen.”
Regarding the destructive autism parent community:
- This parent community pushes the agenda of parents who believe that their child’s autism is a horrible tragedy that befell their parents and family
- They call themselves the autism community, but they consistently refuse to include or listen to autistic self advocates (especially adult self advocates). They only care about neurotypical parent perspectives (and only from parents who think autism is horrifying)
- They promote things like intense behavioral therapy for young children, institutionalization, group homes, sheltered workshops and genetic research aimed at developing prenatal testing. They do not listen to autistic self advocates who object to these things.
- They don’t care about the priorities of autistic self advocates. They do not do any work on issues such as self-directed adult services, enforcing the Olmstead mandate to provide services in the community rather than institutions, or research into skills for listening to people whose communication is atypical
- These parents have an emphatic preference for person first language. They say “people with autism.”
- What they mean by this is “Autism is NOT a part of who my child is, it’s an evil brain slug attached to their head, and I want to remove it at all costs.”
There is also an autistic self advocacy community. It developed in significant part to counteract the harm done by the autism parent community:
- A lot of the agenda of the autistic self advocacy community is the same as the IDD community and pursued in cooperation with the IDD community
- But there is also a lot of work that’s specifically about countering the harm that has been done by the autism parent community
- Much of the worst harm done by the parent community comes from the cultural consensus that autism is like an evil brain slug, and that any amount of brutality is a good thing if it might mean that the slug shrinks or dies
- For this reason, participants in the autistic self advocacy community generally have a very strong objection to person first language
- They call themselves autistic or Autistic.
- In this context, “autistic person” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.”
Neither set of self advocates are wrong. Both positions are legitimate and important to be aware of. In order to know what someone means by their language choices, you have to consider the context.
I always wonder who came up with the whole “person-first” thing with disability, because it feels like it would have been a non-disabled person. I hate the implication that my disability has to be removed from me, and separated from my identity, to make me okay.
Actually, it was people with intellectual and developmental disabilities who started it. Here is the history as given by The Arc:
On January 8, 1974, the People First movement began in Salem, Oregon, with the purpose of organizing a convention where people with developmental disabilities could speak for themselves and share ideas, friendship and information. In the course of planning the convention, the small group of planners decided they needed a name for themselves. A number of suggestions had been made when someone said, “I’m tired of being called retarded – we are people first.”
many self-advocacy groups of people with ID/DD are still built around a “people first” ideology, and that language is a conscious effort among them to resist dehumanization. of course, non-disabled people are given to using person-first language in dehumanizing ways — what else is new. they can pretty much figure out how to make ANY language dehumanizing.
but it’s important in cross-disability efforts to remember that person-first language is the product of people who were fed up with not being treated like people. and it’s still very important to many self-advocates with ID/DD.
of course, the Blind, Deaf and Autistic communities (for three) are staunchly opposed to person-first language because of the way nondisabled people have used it against us. (i don’t mean to say that everyone in these communities agrees, only that it’s the official position of the NFB, ASAN, the NAD, etc.)
so we all need to remember that different people prefer different language because non-disabled society has chosen a variety of ways to linguistically scorn us. either person first or ‘identity-first’ language can be used in a bad way. and either can be used in a good way. it really depends.
a weak and tortured bucky making sure steve gets to safety first
It’s because Bucky has a habit of letting Steve go first.
——-
1) Always let Steve go first up the stairs, so that you can keep an eye on him. It’s easier to count Steve’s breaths and notice when Steve’s heart does that thing that makes him stop and shake. Much easier to stop and pretend to tie your shoes while you wait, worried, than to realize 2 flights too late that Steve’s no longer with you.
Later: Your limbs are sore and numb from being strapped to a table for 2 days and you’re pretty sure you haven’t eaten and the entire base might be exploding, but when Steve says “let’s go up,” you tell him to go first.
———-
2) Steve’s walk was mostly normal, though he swung his hips in a certain way to compensate for his scoliosis, and that put a special cadence to his stride that you unconsciously match. Even without Steve around you would twist your hip back before swinging your leg forward. Twist, swing, twist, swing.
Later: Steve is leading the way through the forest, and you’re finally used to his height and broad shoulders and that dumb shield, but something still feels wrong. Somehow your pace doesn’t quite match, and you can’t figure out why.
———-
3) Colors don’t work the same with Steve, so always describe unfamiliar objects by their shape and relative location, like that square window past the third door on the left, or the man wearing that unseasonably long coat standing in the corner by the garbage can.
Later: The boys are singing in the other room and you’re at the bar with Steve, trying very hard to get drunk because of course you’ll follow Steve into whatever but that doesn’t mean you have to do it sober. “Steve,” you whisper, “Check out that lady by the door, next to that short thin guy who has his shirt open.” Steve looks over. “The one in the red dress? That’s Miss Carter.” You decide you need another drink.
———-
4) When walking down a narrow dark alleyway always stay on the right, because Steve’s bad ear makes the right side feel blind to him (though damn if Steve’d ever admit that). On broad open streets, switch to Steve’s left side, so that Steve could hear you better through the noise.
Later: Dum-Dum gives you a weird look as you line up to charge into a Hydra base. “Why won’t you take the left flank for a change?” You start explaining Steve’s bad ear before you remember that he’s not that Steve any more, and that Captain America doesn’t have a bad ear.
———-
5) Stuff in your left pockets are for Steve: the asthma cigarettes that Steve could never afford, a dime for that popcorn that Steve likes, tickets for whatever shindig you’re trying to drag Steve along to. Sometimes you put things there for Steve and totally forget about it, like extra paper and a spare pencil in case Steve wants to doodle. The left side always belongs to Steve.
Later: Steve is awfully quiet by the campfire. You sit down by his good ear and reach into your left pocket. “Hey,” you say, pulling out a news clipping about the war front that featured a lovely photo of Miss Carter. “You read this yet? They think Morita’s a Japanese defector, but the section on Dernier is priceless.”
———————-
Still later:
Report on the Winter Soldier reset procedures
After the latest test run, only the following anomalies remain:
A) The asset tends to hug the right walls and not the left, and hesitates for 30 microseconds before climbing stairs. However, he does not hesitate when scaling walls or ladders.
B) When walking unopposed the asset has a characteristic and identifiable stride, which is dropped when he is making a covered approach.
C) The asset communicates via relative locations, often omitting crucial color information. However, he can be commanded to describe the colors of any object in impressive detail.
D) When dressing himself, the asset keeps his knives exclusively on his right side, and his left pockets are underutilized. This may be an effect of continued unfamiliarity with the new left arm.
After extensive field testing, we have determined that these anomalies do not impede the asset from completing his missions, and declare the reset process complete.
—————————
[basically the textual partner to the colorblindness comic]
This is perfect, and the thing I’ve been trying to think of how to write but so much better
ufod:
heres an idea: instead of trying to “fix” autism try to fix the way allistic people react to austic people because saying you want to cure autism and trying to find a way to make sure autistic children arent born is just like saying that you want to cure gay people and thats :///////
They actually did that.
As in, there were studies.
They found that when they tried to improve the social skills of the autistic kids, nothing much happened.
When they improved the social skills of the nonautistic kids (by telling them how to properly interact with autistic people without freaking us out and overloading us), then the autistic kids’ social skills suddenly improved.
Why? Because we were reacting to being treated with respect for the first time ever, by other kids. Because other kids were making room for our sensory sensitivities and our social differences. Because they were making an accessible environment for us, and in an accessible environment, suddenly we thrived socially.
And that says everything about where the social skills problems actually lie.
How about making things that autistic people need more accessible and not cost WAY more money than most people can afford? If people are nonverbal much of the time but, say, have a much easier time typing, how about we just ACCOMMODATE THAT with electronic thingies that talk or whatever works best for that person?
My brother is 15 and autistic. He also has some cognitive impairments. Sam is … I don’t know a good way to say “more autistic than me” (which sounds awful) without resorting to a Functioning label, unfortunately, and I don’t want to do that. (I’m afraid I avoid looking up autism stuff like the plague because it makes me want to set the cure and anti-vaxxer types on fire and I don’t need that added stress.) *considers* Sam consistently has more difficulties than I do, though we’re both on the Autism Spectrum. How’s that? (Seriously, if you can help with terminology, I’d appreciate it. iamshadow21, do you have anything for me that doesn’t sound terrible?)
You know what would be really great for Sam? A service dog. Even though we’ve been working on the “Sam, you have to look both ways before you cross the street. Stop look and listen!” thing for years, Sam just can’t get it down. That’s a serious safety hazard! And I think it’d help him feel less isolated, too. AND it’d help his anxiety and stress levels in loud, crowded public places when he starts to feel overwhelmed. But there’s no way we can pay thousands of dollars for that. AND a lot of service dog programs are focused around little kids with nothing for teens or adults.
Most of the autism programs – at least in our area – stop around age 10. MAYBE a couple go to age 12. But … apparently autistic kids aren’t going to grow up to be autistic teens and autistic young adults? There is quite literally NOTHING for a kid Sam’s age. There isn’t in most places. And I’m not talking about a cure thing, but being able to socialize with other people his age who GET IT.
Sam knows he’s different. He’s a pretty happy kid, but he does know that. He’s lumped into a general special ed class for his first and last hour at school and mainstreamed for the rest with an aide and I HATE IT. I hate it SO MUCH. Half the time they just dick around and show the kids movies. That is not educational in any way whatsoever – it’s not like they talk about the content in any way. They don’t even seem to have anyone trained properly in Special Ed – based on my observations at any rate.
You know what Sam needs to learn that ISN’T stupid movies? Real life skills like practice with money and how much money is worth. (We work on that at home with his allowance for chores, but we can’t do it completely alone.) Telling time – though he’s actually not bad at that and I try to work with him, but I’m not a trained teacher and I can’t quite figure out which part is tripping him up. IN THEORY his actual teachers should be able to help with that.
I threw a hardcore temper tantrum – tears streaming down my cheeks and repeating sentences over and over and rocking A LOT, and screaming over my mom using the telephone – when I found out that in high school they were putting him in the “Vocational Training” class. That’s a polite way of saying “They have the Special Education kids empty the trash and the recycling bins and sometimes work in the cafeteria serving school lunch so they don’t have to pay somebody to do it.” And if Sam is doing that, he should damn well be getting paid. I went to that high school (before I dropped out). I saw the way the other assholes at high school treated those kids!
The ONLY reason that I’m putting up with it at all is that my mom has been sick/injured enough to require a lot more of my attention and doesn’t have the energy to deal with it and *I* can only handle so much – especially since I’m Sam’s sister and not his legal guardian. And Sam likes it, but he’s being taken advantage of horribly and it infuriates me. I want to rip their faces off with my teeth.
Goddamned fucking circle people.*
*Again to quote House: See, skinny, socially-privileged white people get to draw this neat little circle. And everyone inside the circle is “normal”. Anyone outside the circle needs to be beaten, broken and reset so that they can be brought into the circle. Failing that, they should be institutionalized. Or worse – Pitied
If he can tell you, I’d ask him how he categorises his autistic experience and respect that, but basically, disability is not a dirty word. If particular aspects of his autism are disabling, if they affect his life in ways that need accommodation or support, then disability or difficulty are the right words to use. You are both autistic, but your patterns of dis/ability will be different from each other, as they would with any two autistic people, especially if either of you has other diagnoses to factor in. Sam may struggle with things you can manage, and vice versa. Many autistic people object to functioning labels because they imply a line, with ‘severe’ at one end and ‘neurotypical’ at the other and all the bullshit assumptions that go along with that flawed viewpoint, when really, neurodiversity is like a colour wheel scattered with buckshot. Everyone’s skills and difficulties form a different constellation.
YOU DO NOT HAVE TO BE PARALYSED TO USE A WHEELCHAIR
http://cheezburger.com/8236856576
This stupid joke on Cheezburger shows people in wheelchairs at the World Cup who have stood up to cheer with the caption “Miracles Happen Every Day at the World Cup!”
I know this is a joke but it’s part of this trend to call anyone who uses a wheelchair but can also walk, a fake.
Paralysis is really not the only reason someone is in a wheelchair. There are many, very legitimate reasons to use a wheelchair that don’t involve someone not being able to stand. A wheelchair is a mobility tool for people who have trouble with pain, fatigue, balance or joint problems not to mention broken bones or dislocations. Most of these people can stand up and even walk a short way this does not mean they shouldn’t use a wheelchair. People really need to get this. The media (and I know this is not a news article but there have been some) needs to stop convincing the public that anyone who is not paralysed is not disabled.
You CAN NOT tell by looking at someone if the they have an invisible illness. You can not tell if they have heart trouble, if they have Lupus or arthritis or EDS. You can not tell by looking at someone if they are in pain.
Going to a sporting event is massively painful and exhausting. If you are running on very little energy to begin with there is no way you can manage it without assistive devices and why should people have to miss out on things they love because they are disabled? Why should going grocery shopping be something that takes all week to recover from? If walking and standing are something you take for granted then I am happy for you but it is not something I have ever done.
I’ll use myself as an example. I have EDS so my joints are prone to dislocation. Have you ever dislocated something? Have you had a bone shift and pinch a nerve? It’s not fun. My joints hurt all the time and they are unstable. My blood vessels are too stretchy so if I stand still for any length of time I pass out. My balance is terrible and I fall a lot and that causes more damage. I also have Fibromyalgia so all my pain signals are amplified and much of my soft tissue is effected. And just to make things extra difficult I have CFS/ME. I only have the energy to shower once a week most of the time. Moving around the house is often exhausting. Sitting upright can be too much on bad days. Walking around the shops is so, so exhausting. Getting to a sporting event or a concert is a major undertaking.
I look fine. I am a fat woman in her 30s who can walk and stand for short amounts of time. I am not lazy. I am in pain and running on empty and trying not to pass out.
To go to a major event a wheelchair would help stop dislocations (not entirely stop, I dislocate fingers often while driving), it would help keep my pain more managable. It would help reserve what little energy I have so I can make it through the day. I will still need a week to recover. A week of massive pain and migraines and fevers and sleeping 12 hours a night. A week where I can’t shower or cook food or do household tasks.
A wheelchair would help stop me falling over. When you have bad balance it’s hard enough to walk on your own. In a crowd it can be awful. You get bumped all the time but if you can’t correct your balance after it you fall and falling can do so, so much damage.
A wheelchair is often more suited to sitting in than a plastic chair at a sporting event. Hard chairs with no lumbar support can cause pain and muscle strain in your back and neck, they can put pressure on joints to move ways they shouldn’t, they just hurt. Sitting for hours in a chair like that is uncomfortable for anyone but for someone with underlying problems can cause massive pain and dislocations and muscle spasms and migraines.
So don’t judge that person on the scooter or in a wheelchair or parking in a disabled parking space if they have a permit. Just because you can not see any problem with them does not mean they are faking it or rorting the system. One day of joy at an even is not representative of how people live their lives. I go to the Mardi Gras parade each year in Sydney. I get drunk and take a lot of pain killers. I spend the weeks before reserving my energy. I spend many, many weeks afterwards recovering. I know how much I pay to spend the night leaning on a barrier and cheering on the parade. If you don’t see my cane you may not know I’m disabled but that doesn’t stop the pain and the price I pay. Don’t judge my life by what you see that one day. A wheelchair or scooter would be fantastic for such a big day out but they are expensive and I can not afford one.
Invisible illnesses and disabilities are invisible but they are still there! Not everyone is lucky enough to be able to take things like walking and standing and going places for granted. Remember that.
Read the spoon theory by Christine Miserandino and stop judging people by what you can see. People could be dealing with all sorts of pain and complications and really struggling to have a day out or just get enough food to get through the week and comments and muttering and ‘looks’ and taunts just make it all so much worse. it’s none of your business.
cultural problem
I think a lot of the autistic and autism communities have this idea that… there’s a type of person called aspie. And those people aren’t ~real autistics~, they just are really good at academic geekery and bad at knowing that people are real.
But there’s this notion that *that* kind of autistic person isn’t really disabled, especially if they can pass.
And there’s a real cognitive subtype that actually *is* associated with receptive language problems, being good at academics and other abstracty things, and being able to pass if you push yourself in certain ways. But those people are disabled too.
And I think – those of us who have been pushed to see ourselves as that subtype when we’re not, when we’d never in a million years be capable of that, often end up being somewhat repulsed by people who *do* have that particular cognitive configuration.
And it’s not ok. Because the ableism we face isn’t their fault, and they’re no more free of it than we are. And we need to not be part of the problem.
The aspie hate things people say are not accurate descriptions of *anyone’s* cognitive type.
This is true and valid and I agree we need to stop eating our own.
Though I want to say something about the aspie subtype. As someone who benefited from that label (and no long IDs as an aspie), I’ve always felt that non-autistics and neurotypicals tend to value one subtype over the other. They usually are the once that sort of enforce this schism. Aspies are portrayed as goofy, cute, white boys who just want to fit in. People see they stereotype of them being good with math and computers as marketable. They seek out IT type aspies. Whilst everyone else gets passed over. The problem is many of them that are articulate, passing and have enough social reading, they end up buying this well constructed lie that they are far more valuable than non-speaking, chronically ill or non passing autists. So they end up throwing us under the bus.
This is not a new phenomena. Nevertheless it’s still fugging awful. My problem is not aspies but the NTs and the allistics that enforce and build this massive schism up. They want us in-fight, they want the aspies to talk over us over issues, they want the resentment. This hierarchy is artificial and awful and we need to destroy it.
So yes, they are disabled, but they also benefit a great many privileges too they need to realize themselves that we’re all drowning.
I have no problem personally with the term ‘Aspie’ or people who identify as such, but I stopped using it to identify myself because I realised that it came with baggage. Functioning label baggage. ‘Asperger’, for people who even know the term, tends to be equated with ‘high achiever’. It tends to imply that the person will go far if they find the right career, will succeed in academia if they find the right specialty. It implies a level of competence that I consistently failed to be able to live up to.
Now, my diagnosis was for Asperger Syndrome plus a handful of other things, and don’t get me wrong, I don’t think any diagnostician would diagnose me differently. I am highly verbal, highly literate, and as a child I learnt to pass to a degree and I live with that privilege/curse every day. But I failed out of my last year of high school and four further education attempts because the social stresses and expectations pushed my anxiety through the roof and into burnout so severe I was housebound. I had a handful of minimum wage jobs, one I know I was fired from because of my (then un-dxed) autism, and two that I probably stopped getting shifts from because of my short-term memory issues and my failure to grasp things at times that seemed easy or common sense to those around me.
‘Aspie’, with its connotations of competence behind a quirky, eccentric shell, made those around me – family, social workers, employment case managers – think that I just wasn’t trying hard enough. And that was crushing.
I realised when I started reading about other autistic people, that I always seemed to find more in common with ‘autistic’ rather than ‘Aspie’ autobiographers. Even if our actual life experiences were very different, ‘autistic’ authors seemed to write more about problems I faced, and seemed to more often have a world view closer to my own.
‘Aspie’ began to seem very limited, while ‘autistic’ encompassed the whole of my identity and disability. It had the flexibility I needed to cover my experience.
Add to that, I have a running tally for how many people I once loved and respected who have made the ‘arse burgers’ joke to my face when I disclosed. The first time was a very old and dear friend at my birthday dinner, a handful of months after my diagnosis. At the time, only a few people close to me knew. Every time someone makes that joke it catches me unguarded, and every time it hurts. I will never understand why people think that making that joke when someone is in such an incredibly vulnerable place is acceptable. Every time, it’s as if they think they’re the first person to think of it, and that they’re hilarious. At least the word ‘autistic’ gives me one less vulnerable place than if I use the word ‘Asperger’.
knitting in the dark 