Tag Archives: neuroatypical
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.
I do not suffer from autism.
I suffer when someone calls my way of being a disorder.
I suffer when others invest time and money to prevent people like me from being born.
I suffer when anyone suggests that I might recover or be cured.
I suffer when others feel sorry for me or for the family I have created.
I suffer when I fear that people will consider me broken.
I suffer when my being autistic scares people away.
I suffer when others try to silence me.
I suffer when people suggest that I do not have all the same feelings they do.
I suffer because I must describe my way of being by referring to a medical diagnosis.
I suffer because I live in a society that does not celebrate difference.
I suffer because I live in a culture that does not cultivate sensitivity.
I suffer because I live in an environment that values appearance over substance.
I suffer because I live within a social order that calculates human worth based on productivity and conformity.
I suffer because I live in a world that does not honor the gifts that autism brings me.
I suffer because I have learned to apologize for who I am.
But make no mistake: I do not suffer from autism. I do not suffer from who I am.
[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]
This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…
I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.
These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.
I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.
This is ableism.
Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.
I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.
These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.
One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.
All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.
Why do feel the need to apologize for our bodies’ needs and justify the choices we make about them? As I continue to incorporate body positivity into my life, I still find myself listing off what I ate all day to justify why I’m hungry now, or explaining, in detail, what made me so tired that I need a nap.
Sometimes people, usually neurotypical people with no sensory impairments, don’t use these, almost invariably because it looks ok to them. They can read it, so they don’t understand that other people won’t be able to.
Cara at The Curvature: Rape Victims Tell of Mistreatment by the NYPD [Trigger warning for discussion of sexual assault]
And while all of the details of these women’s identities are not disclosed (and thus any or all of the following issues may have in fact applied to their stories), the accounts do not even begin to explicitly discuss the brutal and specific challenges faced by victims who are of color, trans*, disabled, poor, queer, and/or sex workers, due to the prejudicial hierarchies regarding who are “real” victims of sexual assault.
Someone I know recently made the claim that Schizophrenia and “exceptional creativity” are “practically the same”.
This stems from a very common misconception that I see, regarding the understanding of Schizophrenia and other schizotypal spectrum disorders (Schizotypal Personality Disorder, Schizoid Personality Disorder, Paraoid Personality Disorder and in some cases Schizoaffective Disorder). Specifically, stemming from ignoring the negative effects it can have on ones life in favor of the positive, in order to try to paint the spectrum as nothing but shiny rainbows and glitter.
i remain forever confused by people who are condescending, derailing and offensive but think because they said it all in a “nice way” that the fault lies with the person who points out what was hurtful in what they said/wrote.
Until we have a diagnostic test that’s based on blood markers or imaging, we probably won’t have a perfect diagnostic test. (This is true of many diseases, especially neurological ones.) Still, researchers believe they’ve come up with something that works better — they say when the looked at a group of previously diagnosed fibromyalgia patients, the tender-point exam was about 75% accurate, while their criteria caught it 88% of the time.
By Annaham 8 June, 2010. recommended reading bodies, bodily autonomy, chronic pain conditions, derailing, fibro, fibromyalgia, marginalisation, medicine, mental illness, myths and misconceptions, neuroatypical, neurotypicality, rape, schizophrenia, sexual assault, sexual violence, social justice, social treatment
Society expects that all people with disabilities will be loving and joyful and cooperative and that our very presence will bring inspiration and hope. That is our role. Everyone around us can feel good because of our loving presence.
Bull hockey. It is our prison.
We are not allowed to be contrary. We are not allowed to formulate an opinion that might be controversial. We are not allowed to protest. We are not allowed to complain.
No seat for disabled students on AMS Council [University of British Columbia, Canada]
Arts representative Matt Naylor explained that he opposed the motion partly because he was concerned that creating the seat would be out of line with the faculty-based system of AMS Council. “Creating any kind of non-voting seat for a specific constituency that isn’t one of the faculties has a lot of problems. We, as faculty representatives, should be the voice for all of our faculty, and we should be considering what is best for the society holistically,” he said.
“Creating special seats for special groups specifically dissuades that because they are responsible for articulating a viewpoint, and not articulating what they think is best for the entire society, so it creates a really fractious system.”
Naylor added that problems regarding representation lie in representatives’ engagement with their faculties, and not necessarily the structure of AMS Council. Councilors should make a larger effort to engage their constituents to make sure everyone’s voices are being heard.
I’ve only ever used a wheelchair for a few weeks at a time, but I have made extensive use of walking aids like crutches and sticks. You have no idea of the panic that used to come over me whenever someone took my crutches away, saying, ‘I’ll just put these over here, out of the way. Just ask me when you need them.’ Because no matter how helpful and well-intentioned the person, taking my walking aids away took away my independence; my autonomy as a person. Without them I might as well have been tied to whatever chair I was sitting in. Taking my walking aids away made me dependent on THAT PERSON, and if they left the room or were busy or distracted (because this was most often said by a teacher in a classroom setting) I was left immobile and helpless. And yes, from time to time we all find ourselves in situations where we’re dependent on others, but for disabled people dependence is so often all that’s expected of them, so often the norm, that any time someone takes away some of their hard-fought-for Independence, it’s that much more hurtful. It’s bad enough when you’re prepared for it – when you’ve made the conscious if reluctant decision to trade a little of your independence for someone else’s convenience. When it’s unexpected, sprung on you because ‘those are the rules’ that can’t possibly be modified or tailored to your individual needs, it’s unbearable.
When you’ve been been taught thoroughly enough that you’re Just Not Trying Hard Enough by people sufficiently different that they cannot tell when you are putting in insane amounts of effort, you may start believing it. You may have trouble telling what your own limits are, much less working out a more suitable way to approach things based on how your brain really works. You may feel like you’re Not Really Trying up to the point that you collapse.
This is exactly what got my mother (not on the Spectrum, but not neurotypical either) into the state she ended up in. She felt compelled to ignore any kind of limitation–including chronic pain from undiagnosed bone cancer–until she just collapsed. Between years of getting dismissed by doctors, and refusing to see that she had any limits whatsoever–which also helped keep her from getting the care she needed–she spent years with a very poor quality of life, then died at 60. That really opened my eyes to the fact that I was running breakneck down the same path, and it scared the hell out of me. Especially since I’ve got the same kind of high pain tolerance, and my reactions are similarly atypical.
In certain circles of the Internet, it’s become fashionable to make fun of people with “Ass-burgers,” particularly those who are self-diagnosed. (I prefer to use the term “self-identified,” and will be using both terms here.) One needn’t look any further than various snark communities and “humor” pages. When called on their ableism, people who make these kinds of remarks tend to defend themselves by saying something like, “Oh, but I don’t mean to make fun of the real Asperger’s sufferers! I’m just talking about the people who self-diagnose just to have an excuse to act like a jerk.” Leaving aside the obvious ableism directed towards officially diagnosed people–you know, we “sufferers”–there are numerous other problems with that formulation, which I’ll try to cover in this post.