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I decided things had to change. I still have to figure out how. Less, not no, neurodiversity seems to be in the cards. There are too many wild edges, too few rules about acceptable behavior. I compromised for a while but saw more than I could accept. I took a few days to grieve and clear my head. The sense of missed possibilities due to one small barrier of conscience is hard, but I need a code that calls some things unacceptable like the next beat of my heart. Solid ground is hard to find this world. I did, will, need things to fill the hours. I have a new venture in the works. If it pans out, I can travel and volunteer at a local, inclusive center for people with and without intellectual disabilities all summer instead of working retail. Maybe I can make an internship of it. For now, I will teach a friend to drive.
If I can find the right venue, I might write accessible explanations of important things for people with intellectual disabilities and others. I have toyed with the idea before. My conflict with The University of Chicago Hospital made it seem urgent. Apparently, the witness signature was about verifying my identity, not treating me as incompetent. No one would tell me that until I shouted my way to their lawyer. People with less understanding of their rights, more blue collar sensibilities about authority figures, or without the ounce of entitlement that comes of growing up white in this society might have left empty-handed. A Southerner, less willing to tear every human obstacle a certain new orifice, would have struggled. Delays only ended when I stopped trying to be nice. People, especially segments of the disability community, need these things in clear language.
I can be a good board member. This year, I will run a self-advocacy committee. That starts with creating one. I will do small, ordinary good, play tuba, and ignore the social justice crowd as much as possible. I may try to go to church more. Most of all, I will study hard, become the best lawyer I can, and advocate for children in the public schools. The work will be hard, quiet, worthwhile.
That may be the best fit for me. The only label or title that has stuck is ‘tuba player.’ I am not a boiler room person so much as the furnace. I always find uses. I was born for subtle-yet-critical bass lines, long days, heavy loads. Anything could happen to my blog. I might shut it down, leave better posts as a finished resource, or continue. It may or may not fit into what my life will become. There is no reason to rush the decision. I can make all these choices deliberately, looking for the best route to my goals. If options do not exist in satisfying quantities, I will devise more.
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Post reblogged from It's all fun and games
[tw: this might come across as ableist]
There’s so many people speaking up in defense of kids who have trouble at school, kids with learning disabilities, kids who can’t keep up because of other problems they have, kids who can’t keep up because their teachers don’t properly motivate and support them. And I guess I could get behind that.
If there was someone, anyone, anywhere, speaking up just as loudly for the clever kids.
Those kids who could write and read fluently with seven. Those who could do high school math in kidergarten. Those who learn and learn and learn, those kids with the constantly good grades and perfectly done homework, those kids who never learn a single second and those who finish assignemtns taking the whole lenght of the lesson in five to ten minutes.
Who speaks up for those kids? Who speaks up when they’re bullied by their peers for being a teacher’s pet and by their teacher’s for being to clever and quick? Who speaks up when they grow up without ever having their abilities and struggles aknowledged because they are clever, so everything should be easy for them? Who speaks up when they can never be good enough, no matter what they do? Who speaks up when they are shamed for their abilities and skills? Who speaks up when they are bared from any help because they are not deserving of it, because they are clever anyway. Who speaks up when they are denied help in completely unrelated aspect of life because of their good grades? Who speaks up when they break? Who speaks up when they can’t keep up with all the expectations anymore and give up? Who speaks up when they are denied a voice for being too clever, too arrogant, too good at school to deserve a voice? Who speaks up when they need to be heard?
There is no one. And if I try, I get called arrogant and ignorant and ableist. I get told that people have worse problems than that. I get told that it’s harder for those who can’t keep up.
Harder in what way? People aknowledge there’s a problem. There’s so many fucking ways to get help, for so little money. There’s so many options for you.
There are only two for those like me. We can simply wait until it’s over, sit down and be quiet, waiting while the world abuses us and not show how much it hurts or we can finally break under the strain and be branded as lazy and rebelious and arrogant.
It’s okay if you want the school system to be more supportive of kids who can’t keep up. But don’t do so at the cost of all those clever kids. Don’t take away what little support they have, just so you can feel a bit better.
It’s not fair to us. It’s really not.
[and yes, I fucking know it’s not always all that easy to get support when you’re struggling with school. But at least there are options. There are so many fucking options. There are so many people aware of the problem, there are so many people invested in fixing it. And the problems I and people like me face, they don’t exist. Or they’re just some sort of first-world-problem, so easy to dismiss and mock. We’re people too. And we don’t deserve to be treated like shit, either, thank you very much]
EDIT: Yeah, I know that kids can be gifted while at the same time being disabled. It’s just that where I live, being gifted will always be considered more important than being disabled.
I understand that being twice exceptional means being twice fucked and that being only gifted is probably a lot easier than having a learning disability.
However, in my experience, children I have gone to school with who only had a learning disability fared far better than those who were clever along with their disability. Because we would, at every turn, be told that we were to clever to get help, regardless of disability. So our perceived intelligence is what fucked us over in the end, not the disability. Because if it had only been the disability, then there would have been people willing to help.
Which is why, in my frustration, I focused only on being gifted while not mentioning that it could go along with being disabled. I am sorry for this oversight.
This is true. The gifted see one set of problems, the disabled another. These groups are rarely together enough to recognize that their struggles in the schools have a common source: the idea that one-size-fits-all works. Too many American schools fail
- the intellectually gifted child;
- the kid whose gifts are spatial, emotional, artistic, etc., anything undervalued in the traditional classroom;
- the child whose cultural background is anything other than the most mainstream imaginable;
- the kid whose learning speed is unusual;
- the child with an uneven set of strengths and weakness
Being twice-exceptional where I went to school was a nightmare. I was also called lazy, too smart to need help, trying to game the system, a waste of time and resources. I rarely saw kids with only disabilities get meaningful help. In the long run, they were worse off than those of us who were also good at school. We, who could play the game well enough to compensate for our weaknesses, did better in the long term. More of us got diplomas. Initially, kids with only disabilities were allowed to fail quietly. Adults sometimes actively persecuted the twice-exceptional. As I understood it, kids with only disability labels were stupid, tragically worthless. We were spongers, morally bankrupt. That was our fault.
We need ableism out of the schools. We also need to rid education of the idea that one-size-fits-all works. It is part of the problem for kids with disabilities and many other groups of children. It is a change of attitude. Unlike underfunding, it costs nothing to fix, though it will lead us to change policies in ways that cost in the short run. In the long run, successful schools are good fiscal sense. It costs less to educate people than imprison them.
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This is an adult forced out of her home, away from friends, by Medicaid bureaucracy.
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Post reblogged from CAN YOU SMELL WHAT THE LOK'TAR IS COOKIN'?
Dear parents, special education educators, siblings, and everyone else who isn’t Autistic,
You do not get to decide how I refer to myself.
If I want to call myself Autistic, I damn well will.
If someone else wants to say they’re “with Autism”, they can.
I will not impose on another person’s right to CHOOSE how they want to refer to their diagnosis.
Conversely, YOU do not get to CHOOSE how I refer to MY OWN diagnosis, and you do not get to choose what is offensive or not, because YOU ARE NOT AUTISTIC.
And by saying that calling myself Autistic is derogatory, degrading, or denotes lack of respect for myself, you show lack of respect for ME, as you are actively removing MY choice in the matter.
As a queer person, I can make the comparison that it’s akin to telling someone else “don’t call yourself queer, it’s degrading, you need to say Lesbian!”
Are we clear?
Sincerely,
Sarah the AUTISTIC PERSON
Why is ‘call people what they prefer to be called’ a hard concept? Listen to the nice voice of reason with the kitten avatar.
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I agree with Sherlocksflataffect. A conditional ally is an oxymoron. Being nice is not required. People have rights when they give baked goods to their neighbors and cut others off in traffic. Rights are basic entitlements, a floor under how we can be treated. If we hold that they exist, everyone has them. An ally knows that. Allies are for our rights when some of us snap at them. They care about leveling the playing field, not earning a metaphorical cookie. However, allies do not spring up out of the ground.
This is where civility comes in. If we scare them off before they know who we are, strangers will not become allies. There are bigots in the world who will never consider us people. No amount of well-reasoned dialogue will fix them. Then, there are the decent, ordinary, ignorant. Some of them might like to learn. Being civil to these people is pragmatism. Things change when they cling to their prejudice. I have little sympathy for the lady who experienced the ire of most of #actuallyautistic for supporting Autism Speaks after she heard and acknowledged its inherent wrongness. Initially, though, civility is practical.
When I receive a tirade of accusations or obscenity from an anonymous, online voice, my first thought is rarely that the stranger on the other end might be right. I assume other people work the same way. Treating everyone who phrases a question in an inadvertently offensive manner as the embodiment of ableism is an efficient way to isolate ourselves. Screaming at strangers does not inform. It does not change minds. It discourages any attempt to learn. It dissuades potential allies. We are about one percent of the population. Allies are not a luxury. Polite initial contact is a practical necessity.
When it fails, harsher tactics sometimes come in handy. Usually, they are performance. Consider the bigots I mentioned earlier. They cannot be won over. They refuse to make the acknowledgement of shared humanity that allows for common ground. Verbally attacking their prejudice is occasionally useful, though it will make no impact on those who voice it. It is theatre. The audience is vulnerable members of our community. The fourteen-year-old in an abusive, ableist home needs to see daily, crushing oppression challenged. The young adult struggling to piece a life together needs hope. The good, accepting parents of autistic children, on and off the spectrum, need to see that someone is trying to carve a place for their children.
People in grinding situations can benefit from someone making a spectacle of slaying the monster tromping through our shared space. People who live in the midst of bigotry are sometimes better off if they see it challenged. This kind of action also maintains a sense of territory, of shared, protected space. There are two reasons that I do less of this kind of performance than I did at one time. The first is that it is hard, thankless, and miserable. I have done my share for now. The second is that I want to do positive good. A staged attack on bigotry is useful for mitigating harm, but I want to devote more time to doing good. Harshness is the easy tool online. It is not always the best. I have the capacity to turn off the computer and do other things, so I should and do. Like everything else, harshness is limited. Almost no tool is impractical in every situation. Shouting is the kind of tool that is most effective rarely used, anyway. Half its value is surprise.
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I learn well from statistics. That seems typical of autistics. Not everyone can. Those of us who want to educate allistic society need facts overlaid with stories for people who learn by feeling. Unemployment and abuse data are useless to those who cannot understand the numbers as human lives. For people who need pathos to grasp the magnitude of the problem, this might work:
http://30daysofautism.wordpress.com/2012/07/19/preoccupation-with-another-layer-of-autism-stigma-crap-this-goes-deep
Analyze it. Explain that the mother wanted to make a shirt as part of her efforts to teach self-advocacy to her autistic child. This is important because her son needs ”to have the self-understanding to express what he needs.” He cannot take for granted that his needs will be understood. Ms. Kelly understands that her boy must grow up sufficiently skilled in knowing and saying what he needs for a happy, healthy life to routinely explain it to people in his environment. She wanted to paint an autistic pride shirt because she sees the need to “build his positive view of himself that includes being autistic.” She knows it will be harder for him, as an autistic, to have a whole, healthy, self-concept built on love and respect for the person he is. She has to actively cultivate it. Point out that the boy, who sounds young in the post, was nervous about wearing the shirt in public. He already knows people may judge him. Whether he knows the terminology, he grasps the concept of passing. He has a burden, a worry, his peers lack.
Reach someone who needs narrative with the idea that these circumstances constitute oppression. This child knows people may think badly of him because of one facet of his identity. He does not deserve to start life with that concern, nor should his family have to strive against society’s prevailing narratives to raise him to know his own worth.
That is not the way to teach me about an unfamiliar oppression. Wage gaps, education statistics, assault data, loss of property, imprisonment make sense to me. Stories without numbers strike me as an emotional appeal that might not be representative of the situation. However, narrative is important. Some people shrug off facts unless there is a human face. Particularly when they are dissected to show their components’ relationship to the lesson, stories are a teaching tool that brings people closer to problems they have never experienced. For humanizing othered groups, they are the next best thing to relationships.
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As the Autism Society asks for compromise and common goals, a lawyer in my intended field is ranting in my inbox. Two days ago, I politely asked someone she likely follows to provide evidence for a sweeping generalization he made about autistics. I did not call it a sweeping generalization, nor did I say it was stereotyping. I was careful to keep judgmental language out of my inquiries. I wanted to learn something if I was wrong, correct misconceptions if I was right. I asked if he had data. Now, I have a shower of tweets, an email in excess of two hundred words, and a second whose length I do not know because I have not yet opened it. Choice quotes from the first include:
- “First off, no fucking shit” “
- You cannot get insurance to pay for anything if you have autism, because research needs to drive services (as you and Autism Speaks would have us believe) so if you deny that there can be both obesity and autism (typical intellectual functioning and executive function deficits, poverty and autism) then you justify continued exclusion based on autism when you would be otherwise eligible without autism (obese only).”
- “You claim Autism Speaks does nothing for you. Autism Speaks is responsible for spending every penny raised for autism creating ‘studies’ that don’t say a damn thing. You claim to know that and yet you demand studies that will also not say a damn thing”
I am not sure how obesity comes into it. She may have been trying to use it as an example to support a point I cannot find.
The conflicts of autism politics have reached a level at which a seasoned professional is sends incoherent hate mail over a stranger’s mild disagreement with an acquaintance. It is ugly, unproductive, and avoidable. These things will stop happening to me the day I give up reaching across the autism world’s borders.
I try to treat Autism Speaks supporters, anti-vaccine ideologues, and people whose words on autism sting as reasonable people even as I unequivocally disagree with what they say. I reach out to them. I look for willingness to learn, try for common ground, work through substantive differences. They say disagreement means unconcern over dead autistics who should be alive. I hear that I care nothing for anyone more visibly impaired than myself. There are just enough attempts at rational discourse to keep me trying. There are also the Internet’s potential observers. It is never bad to look calm, sensible, polite through someone’s inexplicable rage. There is Brenda Rothman. There is a mother I know IRL. We can have a conversation. My faith in the autism community is never extinguished. I know people in every segment of it who want autistics, and everyone, to have access to the makings of a good life. Dialogue is key. Regardless of other differences of opinion, I am glad to have it with anyone who can accept the following:
- My right to exist and that of others like me;
- Our humanity and human rights;
- That discussions of us are only legitimate when we are involved;
- That the status quo is unacceptable.
However, I will be here less if I can get people together. I want to do good in my own community. I have burned through a laptop keyboard striving and arguing. I would rather raise funds for assistive technology in schools or keep Atlanta’s ongoing transit debate conscious of non-drivers with disabilities. I will spend more time working parallel to the other side, less engaging them. I will not miss the incessant fury when I am with it less. Fewer outlandish accusations will make for better days. However, I will be sorry to see less of rare moments of connection in the space between entrenched lines with others who wanted more than a shouting match.
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TW Ableism
I was not born assertive. I worked my way from meek to shouting at a protest. I was born the most mild-mannered person imaginable. If I had not encountered ableism, I would probably have become an academic, taught English or History, and lived out my days without bothering anyone. The story of the route from then to now will become more public as I have the nerve to contemplate new parts. Personal experience is part of the reason I cannot hold my tongue and tolerate prejudiced comments by a pundit or a donation to Autism Speaks. Beyond the visceral response, I will meet prejudice with anything from gentle correction to overt confrontation. What the offender gets varies case-by-case. What I will never do unless critically low on time and spoons, rarely even then, is ignore it. The stakes are too high.
I cannot leave a dehumanizing word alone when a fellow writer, member of my generation, and apparent nice person appears to be loosing his chance at life because he shares my label. The transplant denial seems to touch on stereotypes that autistics are violent. Within twenty-four hours, a new story of an autistic victim of abuse came out. A man was executed despite an obvious intellectual disability because Texas has a definition thereof both cruel and unusual. A spectator at the Olympics was detained by police. They found him suspicious because he did not smile. Parkinson’s has stiffened his facial muscles. If an autistic person or anyone else of stiff or flat affect had been sitting where he was, the same events would have transpired. This is one day’s news.
The ableist word that elicets a lecture from me may not kill anyone, but the idea, made socially acceptable and allowed to enter the decision-making of all manner of authority figures, plays a part in wrongful, preventable deaths. The assumption that there is one acceptable facial expression per situation is not particularly dangerous in and of itself. In the hands of police, it leads to a random spectator dragged away from a race and detained. It ends a few lives, damages the quality of many more, and sends tendrils of pain out through networks of loved ones. It wounds individuals, families, groups of friends, companies, religious institutions, charity organizations, communities, and society. No, I cannot lay off, shut up, leave well enough alone, or mind my own business. Ableism is the concern of everyone it hurts.
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This post is several weeks coming. The concept came slowly, helped along by things I saw, an article on a study, posts. I have run across the problem as a minor theme, but it is rarely stated. It is insidious, so pervasive as to be hard to see. A significant difference between the way able and disabled people are treated in society is time. The paradigms for using irreplaceable hours of life are in opposition. The issue of time is one of the most damaging. It pushes people with disabilities against the current of contemporary lifestyles.
People with disabilities are pushed to constantly improve our weakest areas. This seems to hold true regardless of diagnosis. Some weeks back, I read a few lines by wheelchair user tired of the idea that disability won if he stopped striving to walk. He was physically capable of it, but it was slower, painful, exhausting. It reduced the scope of what he could do in a day. A user who appeared to be a woman of my own age said the same of her cane. Disability won when she did what made her capable. It reminded me of similar responses to accommodations I have had, stories of parents continuing coercive therapies to reduce autistic behavior well into their offsprings’ teens. People expect the disabled to expend time and energy fixing ourselves rather than on useful or fun activities. Overcoming, looking, acting less disabled is the stuff of inspiration porn. I have never seen the people disseminating such stories question the subject’s decisions. Battling disability is assumed to be the best use of our time.
Conventional wisdom encourages the able-bodied and -minded to play to their strengths. People with disabilities are expected to focus on remedying our weaknesses even when the effort is futile. Unaided mobility will not get easier for the bloggers with physical disabilities just because they attempt it. Few allistic people consider an autistic individual’s choice to stop passing a victory. I was recently called entitled for insinuating that we should be free to drop a facade that makes many of us miserable and unproductive.
There are obvious issues with the idea that the best use of a disabled person’s time is to be or look ‘normal.’ It is rooted in ableism. It values one kind of life over others, perpetuates the notion that disability is a synonym for ‘bad attitude.’ The other problem is that the concept also slaps disabled people with a time, energy, and resources disadvantage. If we do the socially acceptable thing, admitting brokenness, trying to repair it, we have less. We have fewer hours, less energy, sometimes less money, often the bad mood that comes from practicing something at which one is hopeless. We ignore pleasurable activities we might share with like-minded enthusiasts, foregoing the chance for connection. We are also at a disadvantage in an economy of specialists. Many of us less time honing our greatest gifts into marketable skills than able people. Those who compete with us have an advantage. We loose one of the blessings of disability: clarity. Like RPG characters who start the game with unevenly applied skill points, our unusual combinations of strengths and weaknesses provide direction in the midst of a career choices unparalleled in human history. If we find what takes advantage of our strengths without requiring characteristics we lack, we may avoid the panic I saw last year as the class of 2014 chose majors.
People with physical disabilities pressured to walk, autistics browbeaten to study social skills in lieu of our interests, and people with intellectual disabilities trained to perform repetitive, one-size-fits-all tasks in sheltered workshops* have something in common: we find ourselves encouraged or forced to neglect talents in favor areas in which we will never excel or which lack the potential for excellence. We are cowards, quitters, slackers, leeches if we exit this rat race to try what we do well. We are socially unacceptable when we perform the act of self-acceptance popular culture pushes on the rest of society in every feel-good movie. This reversal of the conception of wise time management for people with disabilities is a pervasive facet of ableism. It undermines the success and satisfaction of people with disabilities, particularly at school and work. This seems to be a pan-disability problem, harming us across subcategories. Everyone has a right to self-improvement. People should take on traits they can change when they feel those qualities limit them. However, laboring over areas of least talent should not be the bulk of anyone’s day. No one builds a career, hobby, life around the lack of natural inclination. Disabled people are not so unique that our needs are the antithesis of the rest of humanity’s.
*These settings have a history of paying below minimum wage
