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7:34pm September 22, 2014

My own personal envies and jealousies around autism and disability.

A continuation of this post, which you might want to read before continuing.  This post is very long and very involved and may not make sense without the context of the last post.  Most especially, the stuff about “Please don’t have your usual knee-jerk responses to confessions of envy in this context.  We all know our envy is illogical and probably unfounded in reality and potentially harmful to others.  We’re just trying to bring it into the light where people can see it and maybe exorcise it a bit.  Also there’s a tl;dr at the end because this post is monstrously long.

Note: If you’re a member of my family, you probably don’t want to read this.  I’m serious.  I’m trying to be honest about my feelings of jealousy, and some of it revolves around family issues that none of us need to be stressing out about right now.  I don’t blame anyone for anything that’s happened, but things have happened, and so I have these feelings, and I’m trying to be honest about them in the interest of a conversation that’s going on about disability and jealousy/envy.  So if you read this, please don’t try to talk to me about it.  And it’d be better if you didn’t read it at all, maybe.  It’s not that bad, but I know emotions are high right now with the family emergencies and stuff, so I just wanted to put this warning here.  This post isn’t meant for family, and it could hurt feelings unnecessarily.

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8:55pm September 21, 2014

Envy and Jealousy across Disability Lines — I want to hear people’s experiences of all kinds

I’ve been struggling with how to write this post, because the subject is so much of a minefield and so many of us have deep, mostly unexplored feelings about the matter.  I think this crops up in every oppressed community, and someone sent me an ask (I’m keeping them anonymous) that brought up a lot of questions for me about it, and made me do a lot of soul-searching about my own role in these sorts of matters.

Basically the thing is jealousy.  Envy.  Whatever you want to call it.  And this is not envy of one oppressed group for another.  This is envy within one oppressed group, between its members.  And one of the things that interests me about this envy is that it goes both ways.  The other thing that interests me about it, is that it’s usually totally unrealistic.  Although sometimes there’s a grain of truth in it.

Unfortunately whenever anyone gives voice to the envy, people have knee-jerk defensive reactions.  And those reactions end up shutting down discussion before it can begin.  So I’d like to ask if, during this discussion at least, people can talk about this weird kind of envy without being jumped on or dogpiled by people who see it as a threat.

When I say the envy runs both ways, it’s like this:

Someone else who is disabled envies me because I don’t “have to” have a job, and I don’t “have to” pass for normal, and I can “get away with” being visibly gender-atypical.  And their knee-jerk response when I come up with another marginalized identity is like “Not another one, why does sie get to get away with being so different in so many ways?”  This is someone who has a job and has to pass and has to work for a living etc.

My knee-jerk reaction to such confessions is generally to explain to the person, angrily and in great depth, exactly why having no job is nothing to envy.  I go into great detail about how poverty and living on the system has affected and indeed endangered my life.  I explain how being gender-atypical (genderless, with visible traits that make me look ambiguous to a lot of people) may not affect employment for me, but it does affect healthcare in ways that are life and death.  “It’s not that simple, the grass is not always greener on my side of the fence,” is what I want to tell people.

But I also have envy.  I envy autistic people who can put together words easily, who live in words, who have always been good at words.  I envy autistic people who can have jobs, especially blue-collar jobs, but even sometimes jobs in academia.  I envy autistic people who can speak most of the time.  I envy autistic people who can pass for neurotypical most of the time.

And I am sure they have their own knee-jerk responses to my envy.  And while the content of the knee-jerk responses may be absolutely accurate, they don’t solve the problem of the envy that each of us feels towards the other.  They don’t solve this extremely deep-seated feeling that the other kind of disabled person — whatever that other kind may be — has it better.

In the autistic community, even those of us who don’t believe in functioning labels, will often divide our envy along exactly those lines.  The ‘high functioning’ envy the ‘low functioning’, the ‘low functioning’ envy the ‘high functioning’.

I never heard a starker example than from a dad I used to know on the support groups, Mike.  Mike’s son was diagnosed with either Asperger’s or HFA, I forget which.  And he decided that he wanted to be LFA.  He wanted to be LFA because he believed that people who were LFA were unaware of being autistic.  Which is usually inaccurate, but he believed it and that’s all that matters.  So at the stroke of midnight one night, he told Mike, “I’m going to become LFA.”  And at midnight he started rocking, stopped talking, and did his best to imitate what he thought LFA looked like.  His father was able to entice him out of that mode pretty quickly, but it left a strong impression on all of us:  He was so unhappy with his life that he believed turning LFA would solve his problems.

And believe me, there are people labeled LFA who are so full of envy for those labeled HFA that it poisons them and makes them very cruel people.  They believe if you’re high functioning you have no real problems, they would give their eye teeth to be high functioning, they believe if they were high functioning then all their problems would go away.

And I really think that this unexpressed envy in the disability community poisons all of us.  It makes us think things of each other that are not true.  It makes us draw lines in the sand — between those who speak and those who can’t, those who hold jobs and those who can’t, those who walk and those who can’t, it really can be anything.  And what gets me is no matter the division, the envy runs both ways.

So I’d like — if I could — to open up a discussion of this envy.  Where people can talk about it openly.  Even when we know it’s illogical.  Even when we know it’s based on ideas about others that aren’t true.  Just to have it named, just to have it out there, would be a first step towards getting rid of it.  When it’s brought out into the light of day, we can make more sense of it, and see what’s real about it and what’s not.

Because sometimes there are real things about it.  Not having a job does mean there are things I don’t have to do, that people with jobs often have to do.  And I can see why someone with a job would envy what they see as my freedom, even if other facts make it clear that I don’t have as much freedom as they imagine I do.  But there are real things.  But those real things get inflated out of all proportion, because that’s what envy does.

Anyway, I’ve been on both sides.  I’ve been on a side considered higher functioning than another side, and envied people I was told were lower functioning.  And I’ve been on a side considered lower functioning than another side, and envied people I was told were higher functioning.  I’ve been envied by both people who saw themselves as lower functioning than me, and people who saw themselves as higher functioning than me.  So I’ve seen this from pretty much every side.

And I’m curious what other people’s experiences have been.  I won’t judge you.  I can’t promise nobody will.  But I won’t.  And if I had control over the whole thread, I would not tolerate people just doing the knee-jerk “how dare you envy me when there’s nothing to envy” response.  Because it’s fine pointing out that “Hey, some of what you’re envying is all in your imagination.”  And I won’t get mad about that, either.  

I just don’t want this to devolve into personal attacks, because it can so easily, and that won’t help anyone.

But I would love to hear people’s experiences of envy, and being envied, and what they think about it, when it comes to disability.  I guess I’m specifically focusing on autism, because that’s what I’m most familiar with, but any disability will do.  I know this happens with every oppressed group, but I feel like disability is enough to start with.

I’ve been struggling with how to write this post, because the subject is so much of a minefield and so many of us have deep, mostly unexplored feelings about the matter.  I think this crops up in every oppressed community, and someone sent me an ask (I’m keeping them anonymous) that brought up a lot of questions for me about it, and made me do a lot of soul-searching about my own role in these sorts of matters.

Basically the thing is jealousy.  Envy.  Whatever you want to call it.  And this is not envy of one oppressed group for another.  This is envy within one oppressed group, between its members.  And one of the things that interests me about this envy is that it goes both ways.  The other thing that interests me about it, is that it’s usually totally unrealistic.  Although sometimes there’s a grain of truth in it.

Unfortunately whenever anyone gives voice to the envy, people have knee-jerk defensive reactions.  And those reactions end up shutting down discussion before it can begin.  So I’d like to ask if, during this discussion at least, people can talk about this weird kind of envy without being jumped on or dogpiled by people who see it as a threat.

When I say the envy runs both ways, it’s like this:

Someone else who is disabled envies me because I don’t “have to” have a job, and I don’t “have to” pass for normal, and I can “get away with” being visibly gender-atypical.  And their knee-jerk response when I come up with another marginalized identity is like “Not another one, why does sie get to get away with being so different in so many ways?”  This is someone who has a job and has to pass and has to work for a living etc.

My knee-jerk reaction to such confessions is generally to explain to the person, angrily and in great depth, exactly why having no job is nothing to envy.  I go into great detail about how poverty and living on the system has affected and indeed endangered my life.  I explain how being gender-atypical (genderless, with visible traits that make me look ambiguous to a lot of people) may not affect employment for me, but it does affect healthcare in ways that are life and death.  “It’s not that simple, the grass is not always greener on my side of the fence,” is what I want to tell people.

But I also have envy.  I envy autistic people who can put together words easily, who live in words, who have always been good at words.  I envy autistic people who can have jobs, especially blue-collar jobs, but even sometimes jobs in academia.  I envy autistic people who can speak most of the time.  I envy autistic people who can pass for neurotypical most of the time.

And I am sure they have their own knee-jerk responses to my envy.  And while the content of the knee-jerk responses may be absolutely accurate, they don’t solve the problem of the envy that each of us feels towards the other.  They don’t solve this extremely deep-seated feeling that the other kind of disabled person — whatever that other kind may be — has it better.

In the autistic community, even those of us who don’t believe in functioning labels, will often divide our envy along exactly those lines.  The ‘high functioning’ envy the ‘low functioning’, the ‘low functioning’ envy the ‘high functioning’.

I never heard a starker example than from a dad I used to know on the support groups, Mike.  Mike’s son was diagnosed with either Asperger’s or HFA, I forget which.  And he decided that he wanted to be LFA.  He wanted to be LFA because he believed that people who were LFA were unaware of being autistic.  Which is usually inaccurate, but he believed it and that’s all that matters.  So at the stroke of midnight one night, he told Mike, “I’m going to become LFA.”  And at midnight he started rocking, stopped talking, and did his best to imitate what he thought LFA looked like.  His father was able to entice him out of that mode pretty quickly, but it left a strong impression on all of us:  He was so unhappy with his life that he believed turning LFA would solve his problems.

And believe me, there are people labeled LFA who are so full of envy for those labeled HFA that it poisons them and makes them very cruel people.  They believe if you’re high functioning you have no real problems, they would give their eye teeth to be high functioning, they believe if they were high functioning then all their problems would go away.

And I really think that this unexpressed envy in the disability community poisons all of us.  It makes us think things of each other that are not true.  It makes us draw lines in the sand — between those who speak and those who can’t, those who hold jobs and those who can’t, those who walk and those who can’t, it really can be anything.  And what gets me is no matter the division, the envy runs both ways.

So I’d like — if I could — to open up a discussion of this envy.  Where people can talk about it openly.  Even when we know it’s illogical.  Even when we know it’s based on ideas about others that aren’t true.  Just to have it named, just to have it out there, would be a first step towards getting rid of it.  When it’s brought out into the light of day, we can make more sense of it, and see what’s real about it and what’s not.

Because sometimes there are real things about it.  Not having a job does mean there are things I don’t have to do, that people with jobs often have to do.  And I can see why someone with a job would envy what they see as my freedom, even if other facts make it clear that I don’t have as much freedom as they imagine I do.  But there are real things.  But those real things get inflated out of all proportion, because that’s what envy does.

Anyway, I’ve been on both sides.  I’ve been on a side considered higher functioning than another side, and envied people I was told were lower functioning.  And I’ve been on a side considered lower functioning than another side, and envied people I was told were higher functioning.  I’ve been envied by both people who saw themselves as lower functioning than me, and people who saw themselves as higher functioning than me.  So I’ve seen this from pretty much every side.

And I’m curious what other people’s experiences have been.  I won’t judge you.  I can’t promise nobody will.  But I won’t.  And if I had control over the whole thread, I would not tolerate people just doing the knee-jerk “how dare you envy me when there’s nothing to envy” response.  Because it’s fine pointing out that “Hey, some of what you’re envying is all in your imagination.”  And I won’t get mad about that, either.  

I just don’t want this to devolve into personal attacks, because it can so easily, and that won’t help anyone.

But I would love to hear people’s experiences of envy, and being envied, and what they think about it, when it comes to disability.  I guess I’m specifically focusing on autism, because that’s what I’m most familiar with, but any disability will do.  I know this happens with every oppressed group, but I feel like disability is enough to start with.

TL;DR:  In the disability community, a lot of people envy each other.  People who are considered higher functioning envy those they see as lower functioning, and people who are considered lower functioning envy those they see as higher functioning.  I’d like to start a conversation about envy and jealousy in the autistic community and other disability communities, without people judging each other, just getting the envy and stuff out into the light of day where it can be examined instead of hidden the way we all normally do it.

3:54pm September 21, 2014
[A person is lying in bed with their cat, stretching and looking happy.  They say “I feel so much better today.”  They get out of the bed, holding their head and looking sick and in pain, and say “Nope, no. Nevermind.”]

[A person is lying in bed with their cat, stretching and looking happy.  They say “I feel so much better today.”  They get out of the bed, holding their head and looking sick and in pain, and say “Nope, no. Nevermind.”]

3:44pm September 21, 2014

 A Hard Look at Invisible Disability /March 2001

I am invisibly disabled — or so I’m told.The problem is that I don’t believe a distinction between visible and invisible disability is useful, or even meaningful… [click above to read more]

3:43pm September 21, 2014

 Queer Disability Conference - Tangled in the Invisibility Cloak (Cal Montgomery)

One of Cal Montgomery’s two articles about why the idea of ‘invisible disability’ doesn’t actually make as much sense as people think it does.

11:45am September 18, 2014

What I Miss

iamthethunder:

Law school is alright, but something about it is hollow.  I talked to Tim Villegas over at Think Inclusive about it the other night, just briefly, because it has been on my mind.  My classmates are welcoming.  News of my disability has unwound naturally as we ask each other about our plans.  It is not a big deal.  No one is prejudiced enough to make it one.  The absence I noticed, once I could put my finger on what it was, is that no one here is neurodiverse in ways that are an un-concealable big deal.

We must look like people in movies or on TV.  Some people have useful quirks.  Others have cute quirks.  No one is struggling to hold it together from day to day.  By definition, hardly anyone like that soars through enough of the tests of conventional success to land here.  I miss routinely seeing people with low IQ scores, bad brain days, ‘challenging behaviors’ and medications, the duct tape and twine existence of an active disability community.

When I left special ed, I really felt like an alien who had landed on earth.  Like I’d walk down the street and I’d expect people to be stimming or yelling or doing things that people at my school did, and nobody was doing those things, or practically nobody, and I felt very weird and alone.

But one thing that started happening, was that other neurodivergent people would spot me on the street and approach me.  Especially homeless people.  And we’d talk, and we’d feel a little bit less alone.  I remember a friend being surprised by how many people walked up to me and started conversations, and it was because they probably felt as alien as I did and spotted a fellow alien in public and had to come over and talk.

Which was a problem sometimes because I didn’t always feel like talking, but I sort of took it in stride, I didn’t even know anything unusual was happening until my friend pointed it out.

8:47pm September 16, 2014

megachiropteran:

I hurt so much that I would trade anything for relief, do anything, hurt anyone. I remember the day I tried to make a deal with the devil: how stupid I felt, how I cried to know there was no Satan to help me, how there was only the medication they’d give me when I couldn’t pretend I didn’t need it anymore. Which I tried to do all the time; I hated how much I needed all the help they gave me, hated needing to call the nurse, hated feeling like my greatest success would be in making childhood my permanent condition.

— John Darnielle, Wolf in White Van, pg. 100

I’m almost halfway through this novel already but this stuck out for me in such a profound way I had to post it.

8:55am September 16, 2014

fallingivy:

It bothered me that there were no Squibs allowed in Hogwarts. Fine, I can get that Squibs would not be able to do any wand magic, and would not be able to fly a broomstick. They still apparently possess enough innate magic to see the school and other magically hidden locations. Out of the classes at Hogwarts that the kids take, a Squib could take and benefit from the following classes: History of Magic, Astronomy, Divination, Care of Magical Creatures, Herbology, MUGGLE STUDIES, Potions (there will be little foolish wand-waving here), Arithmancy, Ancient Runes, and partially theoretical classes on Defense Against the Dark Arts and Charms.


That’s a long list of classes. And some of them are particularly upsetting to me because there’s stuff like History of Magic being left out- that’s their own history they’re being barred from learning. Since Squibs are often forced into the Muggle world, a Squib would make an ideal Muggle Studies teacher and would no doubt be able to teach a more realistic and informative class than someone going off of biased wizarding texts. Squib kids looking into living in the Muggle world would absolutely benefit from learning Muggle studies, especially if they’re from a mainly pureblood family who doesn’t venture out all too often.


And then there’s the rest of them! Arguably you could have a Squib gifted with prescience, and Divination is supposed to be a very accessible branch of magic. Squibs being excellent at taking care of magical plants and animals and making groundbreaking advancements, Squibs working in tandem with each other to breed different magical herbs for potions, Squib potion masters creating all sorts of amazing concoctions. Squibs working with muggleborns and using logic and science to advance magic theoretically, Squibs being huge pro-muggleborn/pro-muggle advocates, Squibs making star charts and Squibs going into the muggle world to use their healing potions in their jobs as nurses and doctors.

Squibs being so completely shut out of magical education was such a sore point for me in the books, especially viewing the treatment of our only prominent Squib- an angry, bitter, glorified janitor often at the mercy of brats with wands. I’m not justifying or endorsing his abusiveness at all, but this was an awful character to use to explore people without magic in a society that bases your worth on it. A lot of time Rowling seems to validate Wizarding prejudices more than she challenges them. While I really enjoy reading the headcanons about Hogwarts being very accessible to people with disabilities, I can’t bring myself to see that as the case with Squibs being treated as they are. 

It bothered me a lot too, because Squibs seemed so obviously to be disabled people.  And I really wanted to like Filch, but they made him into an asshole, using the bitter jealous cripple stereotype to great effect, which pissed me off too.

1:14pm September 13, 2014
perks-of-being-crazy-julie:

mordecai-put-your-phone-away:

runaon:

This is disgusting.

I heard about the ALS Ice Bucket Challenge thing today it’s fucking sick and there is a petition to get those sick bastards in prison for what they did. Please sign it.


Signal Boost!!

perks-of-being-crazy-julie:

mordecai-put-your-phone-away:

runaon:

This is disgusting.

I heard about the ALS Ice Bucket Challenge thing today it’s fucking sick and there is a petition to get those sick bastards in prison for what they did. Please sign it.

Signal Boost!!

5:44pm September 12, 2014

 TIPS FOR DEALING WITH PEOPLE IN PAIN

billierain:

TIPS FOR DEALING WITH PEOPLE IN PAIN





1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.





2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.





3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.





4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.





5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.





6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.





7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.





8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.





9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).





10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.





11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.





12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

12:56am September 11, 2014

“Unlike horror and fantasy, however, SF is kinda obsessed with stories of “cure,” and other medical stuff like prosthetic technologies and genetic engineering (a.k.a., eugenics). Because of that technological (and medical) focus, SF opens up spaces to question/challenge/explore what it means to human, and, perhaps more importantly for this conversation, who gets to be counted as human. Since SF is a genre where writers set out their visions of what may come, it’s essential that care is taken in how they create their idealized (or dystopic) futures: if disability is “cured” in the future, a very common notion in SF, then what does that tell people with disabilities of how they are valued today? I really believe that SF holds the potential to be a leading genre in re-imagining disability in creative ways that challenges the reductive and harmful stereotypes that society currently holds…it’s just going to take a while for a good chunk of SF writers to identify their (often able-bodied) assumptions about what it means to live with a disability and to start writing three-dimensional, realistic characters who have a disability. Also, we need a plurality of voices in SF creating visions of the future and that must include people with disabilities (visible and invisible, physical and mental)!”

— 

from my interview with Kathryn Allan, co-editor of Accessing the Future  (via spacecrip)

It’s things like this that make me wish I was a better fiction writer, or a fiction writer at all, because I have so many ideas for fantasy and sci fi involving disabled people.

5:10pm September 10, 2014

Disability when the shit hits the fan.

People seem to wonder a lot of things about me.  And all those questions really have one answer, so I might as well just answer it right now.  Here are some of the questions I get asked (not always in these exact words, but I get asked, believe me):

  • Why don’t you care about models of disability?
  • Why aren’t you interested in intellectualizing about oppression?
  • If you’re not anti-SJ, why aren’t you SJ?
  • If you’re not SJ, why aren’t you anti-SJ?
  • What is your problem with what you keep calling ‘echo chambers’?
  • Can’t you see that some of your beliefs are heretical?  Heretical beliefs always hurt people, you shouldn’t have them.  Can’t you just give them up?  You’d get along with people better, more people would read your writing, and you’d get dogpiled less often.
  • Aren’t our beliefs more or less the same?  We both want to fight oppression, don’t we?  Can’t you just call yourself SJ?  People will think you’re anti-SJ, if you keep on the way you’re going.

Okay so.  If this is too long, skip to the tl;dr at the end, it’s pretty basic.  I’ve already gone into why I’m neither SJ nor anti-SJ, although anti-SJ people often think I’m SJ and SJ people often think I’m anti-SJ — a combination which honestly should be a clear sign that I’m neither.  That there is this wide, huge space out here called ‘neither’, outside the tiny, enclosed spaces that are SJ and anti-SJ.  

And this wide huge space out here called neither is the most important place in the world.  This is where ordinary people live.  This is where ordinary people talk to each other.  This is where ordinary people are doing our best to survive.

We are doing our best to survive, without having to have our minds steered by a committee of pseudo-intellectuals who think that if they just get everyone thinking and saying the right things, then society will be fixed.  We are doing our best to survive.

I live in a building of about a hundred people.  Everyone here, by definition, is poor.  Everyone is elderly, disabled, or both.  There are both white people and people of color.  Lots of people have dementia and are afraid to seek help for it lest they be thrown in a nursing home.  So just about every surface you can think of (and some you can’t) has been used as a toilet at some point by someone who was confused or incontinent.  

But I’m not living in an institution.  Nobody controls our lives from on high, although the housing authority tries from time to time, in ways that are often illegal.  This is just where I live.  An elderly/disabled housing complex for poor people.  There’s lots of them all over the country.  This one isn’t the worst, and it isn’t the best, either.

The people who live here are ordinary people.  We talk about oppression but we talk about it in ordinary people ways.  I don’t know how to explain the difference.  I do know, with confidence, that the worst pseudo-intellectual bullshit I’ve seen on tumblr would never, ever fly here.  People would give you a funny look for a second, and laugh.  Or we’d sense your condescension and get openly hostile.  

And I’m just picturing this one woman I crochet with, wonderful old woman who never fails to speak her mind, and if anyone ever gave her a list of oppressive words followed by a list of words to replace them by, she would say, “I’m too old for you to be telling me how to live my life.”  And then she’d politely but firmly shut you out of her life forever.  I’ve seen her do it.  She doesn’t take shit from anyone.

People who live here generally don’t have a college degree, let alone a degree in gender studies or disability studies or something like that.  And we don’t recognize the authority of academia over our lives.  We don’t see having a degree in disability studies as meaning jack shit about what you know about disability.  Many people here are intimidated by people who wield their degrees too obviously.  It’s not that they have a problem that someone’s gone to college, it’s not that they’re against education.  It’s that we’ve been burned too many times by too many people who think their education gives them the right to tell people like us what to do with our lives, or to explain our lives to us as if we don’t know the meaning of our own lives already.  And we’ve experienced too many people who really do think that “I learned it in college” means “It’s true.”  And too many people who think that if we haven’t been to college (or even a place where academic concepts are regurgitated for our benefit), then we just don’t understand.

We understand condescension.

The other main group of people I spend time around is people with developmental disabilities.  All types of developmental disabilities.  Autism, intellectual disability, cerebral palsy, fetal alcohol spectrum, everything.  I get services from an agency that serves only people with autism or intellectual disabilities, so most of the people I know have autism or intellectual disabilities.  Or both.  

And again, we are ordinary people.  We are not a special elite who have been chosen to represent the best of us.  We are just people who happen to go to the same recreation programs, things like that.  And that’s how we meet, and that’s how we hang out, and again, everyone is profoundly ordinary.

Sometimes I think I know what I mean when I say ordinary, and sometimes I don’t know how to explain it at all.  But I know one thing, which is that ordinary people would not and do not put up with the kind of bullshit I see going around tumblr every day I’m on here.

Ordinary disabled people.  Ordinary elderly people.  Ordinary poor people.  Ordinary trans people.  Ordinary lesbians.  Ordinary gay men.  Ordinary bi people.  Ordinary working-class people.  Ordinary ordinary people.  Just ordinary people.

And for some reason, I run into a hell of a lot more ordinary people offline than I do online.  And I fit in better with ordinary people than I do with intellectual elites.  Even when the intellectual elites want to claim me as one of their own, I still get along better with ordinary people:

I’m Nobody!  Who are you?

Are you — Nobody — too?

Then there’s a pair of us!

Don’t tell! they’d advertise — you know!

How dreary — to be — Somebody!

How public — like a Frog —

To tell one’s name — the livelong June —

To an admiring Bog!

I know, I know, I’ve long since become Somebody in a lot of people’s eyes.  But in the offline world I like to be Nobody, or Anybody, and I can be accepted by lots of others Nobodies and Anybodies.  I can be ordinary.  I prefer to be ordinary.  And I prefer ordinary people.

What makes a person ordinary?  I couldn’t tell you at all.  But I can tell you one thing:  If you want to deal with the problems of oppression, it’s ordinary people who will be doing it.

And there’s a huge problem hanging over the heads of disabled people right now.  A bigger problem than any other problem we have.  And that is the imminent collapse of the support structures of the societies we live in.  Some societies have pretty much no formal support structure.  Some societies had one, but it’s slipping.  Some societies still have one and haven’t seen it starting to slip yet.  But it’s going to slip, and it’s going to slip for all of us, and people are going to die.  Lots, and lots, and lots, of people, are going to die.

And it’s going to be disabled poor people, disabled people of color, disabled people with multiple oppressions who are going to be hit the worst.  But all disabled people will be hit in one way or another.

We have to find a way to survive without Medicare and Medicaid and SSI and all that, because those things are not always going to be there.  We have to take lessons from places where the system is already collapsing or collapsed.

We have to find ways of growing and synthesizing the medications that the pharmaceutical companies won’t always be around to supply.  Or people will die.  If I have no way to replace my cortisol, I will die, end of story, that’s it, there is no way someone like me can survive without replacement hormones.  I suspect that with a lot of regulating agencies gone, then medications that can be easily grown will become more of a thing, whether that’s medical marijuana, opium, or kava kava.

But while all that is important, there’s one thing that’s more important.  There’s one thing that makes everything else tick.  That thing is ordinary people.

If my neighbor came by and was starving, and I had only one can of beans left in the house, I would share it with hir.  

That.  That right there.  That is what will save us, if anything will save us at all.

Ordinary people helping ordinary people because ordinary people know what it’s like to have nothing.  People pitching in with what they can do, and accepting help with what they can’t do.

That is the only thing that will save disabled people.

That is the only thing that will save any oppressed people.

But especially when the shit hits the fan.

That is what we need.

We need compassion.  We need love put into practice.  We need more doing and less saying.   Except when saying is a form of doing, at which point it’s exactly what’s needed.  We need the kind of saying that will help people to do things more.  That will motivate people towards love and compassion.  

What we don’t need, when we’ve got nothing to eat, is people pontificating at us about whether we used an ableist word or not.  Hungry people are often crabby people, and you haven’t seen the Grumpy Stick until you’ve seen a starving disabled person pontificated at about disability politics by a pompous pseudo-intellectual.  I mean seriously WTF.  Not the time or the place.

But anyway, the reason ordinary people are key to everything is that most people are ordinary people.  Ordinary people may not have checked their privilege or learned all the right words to say.  But if we’re going to survive as a society, it will be because of ordinary people, not because of SJ or anything dreamed up by SJ.  

And as a disabled person, when I look around and try to figure out how to survive when everything goes to hell.  I look to ordinary people, both disabled and nondisabled.  I look to how to appeal to the love and compassion that exists within most people.  I look at how to bring that out, how to make sure that communities are real communities.  A community is a community when each person is willing to give whatever they can, to help each other person.  That’s what love and compassion look like in practical form.

Without it, disabled people are doomed.

Without it, we’re all doomed.

Now do you understand why I get frustrated with the way things sometimes work on tumblr?  Here, we’re encouraged to pontificate about things that at best have a very loose, sideways effect on us if they have an effect at all.  We’re encouraged to mistrust anyone with different life experiences than our own, to splinter our communities into tinier and tinier fragments.  We’re encouraged to shun anyone who doesn’t believe exactly as we do, and even more than that, to shun anyone who doesn’t shun them too.  Half of what goes on here is the breakdown of communities, when communities are key to our survival, and people wonder why I don’t trust the things that call themselves communities around here.

I trust ordinary people.  I trust ordinary people because I live with ordinary people.  And I know that there are people on tumblr who like me but are afraid to talk to me because I have said things that upset the echo chambers.  And I know that there are ordinary people in my building who can’t stand me but would help me up if I fell down in the street.  And I know that I trust the impulse of someone who can’t stand me but would help me, more than I trust the impulse of someone who likes me but is afraid to be seen agreeing with me in public.

And believe me, I’ve seen the worst of ordinary people, too.  I’ve seen all kinds of awful things.  But with ordinary people, you don’t have the echo chamber.  So you have a stronger chance of building love and community, than you do in a place where everyone is being encouraged to distrust each other and fragment themselves into smaller and smaller groups, groups of only people like themselves.

So the answer to all of those questions… because I can see that the world is heading to some really bad places.  And because the only solution I can see is in encouraging the best impulses of ordinary people towards love, community, and compassion.

And that’s both a lot easier, and a lot harder, than what goes on in tumblr a lot of the time.

It’s harder because you can’t just declare yourself right and be right.  You can’t just tell everyone it’s your way or the highway.  You have to get along with people.  You can’t just order people around.  You can’t just shun people when they say the wrong words or have the wrong opinions.

But it’s also easier, because you don’t need a college degree to understand love, compassion, or community.  These are simple concepts.   These are concepts that children can usually begin to understand very young, if taught.  You don’t need fancy ideas, or a fancy way to present your ideas.  You don’t need everyone to agree on every little detail, in fact there’s very little that anyone has to agree on at all.

The main thing that people have to agree on is that:  People matter.  All people matter.  People matter enough that every community should be committed to the survival of every community member, regardless of kind or degree of disability.  Small, remote towns and places with nasty climates and the like, often already grasp this implicitly because they have to.  Other people have to be brought up to speed.  But these aren’t hard concepts.

Tl;dr: I’m an ordinary person, living among ordinary people, and I think ordinary people are going to be the key to whether disabled people, among others, can survive the upheavals that have already started in some places, that are starting in others, and are about to start in others.  I care more about love, compassion, and community than I care about people agreeing with everything I think or say.  Because the presence or absence of love, compassion, and community will save my life (and the lives of everyone I care about), or end it, when the shit hits the fan.

9:10pm September 8, 2014

And yes, in case you’ve guessed.

That means I’m one of the infamous Silicon Valley Auties.

You know, the ones whose parents moved there to find jobs in the tech industry, and then had lots of autistic children because they themselves were either on or close to the spectrum.

My father and mother met because my mom’s brother was my dad’s roommate in technical school.  My mom was 15 and my dad was 20 and they fell in love at first sight and never looked back, although their parents made them wait until they finished high school.

As far as I know, my dad got technician jobs, and my mom did things like waitressing until she put herself through community college for a respiratory therapist degree.  And then she did that for decades.

So my parents were an electronics technician and a respiratory therapist who always lived either in Silicon Valley or near it because that’s where the work was for electronics technicians.  

They had three children.  Two of the children were flagrantly autistic, as in these days we’d have been diagnosed before the age of two, possibly earlier even than that.  But as it was, we were labeled with other things entirely.  The third child is not autistic, but may qualify for cousinhood, and was diagnosed as hyperactive as a child (and may have had undiagnosed learning disabilities that made school really hard for him).

Three autistic people in a five-person family, and two BAP/cousin types.

Three left-handed people in a five-person family, also unusual.  (Not the same people as the autistic people.  I’m the only definitively left-handed autistic person.  Unless my mom is on the spectrum.  She’s wondered if she’d have been diagnosable with Asperger’s growing up, even though by now she doesn’t show much outward sign of that.  Whatever she is, she’s neurodivergent and so is the entire family.)

Coming from a neurodivergent family doesn’t always make things easier.  Even when everyone knows they’re neurodivergent, which we didn’t.  Nor did we understand the significance of our neurodivergence.

But even with all the ways our family could be messed up around neurodivergence, I see families where someone is the only autistic or neurodivergent person, and I feel like they are missing out on something.

Because when I look at my family.  I see neurodivergence, and disability in general (cognitive, developmental, psychiatric, physical, etc. — everything), and chronic illness, and I see all these people, and I don’t see nondisabled people. 

And so somehow.  Without anyone saying a word about disability.  I absorbed the view that disability is everywhere.  That it is part of the landscape.  That it is natural.  That it is normal.  This does not mean it’s always good.  Take a look around a natural landscape, you’ll find plenty of briars and poison oak and nettles in addition to beautiful things, and you’ll find plenty of things that are both beautiful and poisonous.

What it does mean is that we are a part of this world, for good.  We were meant to be here, we were not meant to be eliminated from the gene pool, we are in the gene pool, the gene pool wouldn’t be what it is without us.  We are here, we are part of everything humanity has ever done, we are a part of the world and we will not and should not go away.

That’s what my family taught me without ever saying a damn word about disability.

It meant waking up at night to hearing my mom cough until she vomited.  It meant listening to my dad have a full-scale, screaming, crying meltdown when his favorite socks shrunk in the wash.  It meant watching my brother flunk some “easy” subjects in school while excelling at “hard” ones, and my mom having to explain to him that being able to spell without spellcheck would not be a job requirement for any job he was likely to end up wanting.   It meant watching my other brother do weird sensory integration exercises like walking with his legs strapped to a snow saucer, and being told what my parents had been told about him, which is “Every time he walks it’s like he’s learning to walk all over again.”  I doubt that’s true, it’s just what the SI therapist told them.  

It meant being in speech therapy myself from the age of six, it meant being in counseling therapy from the age of seven, it meant always being sent to the counselor or therapist or someone psychiatric-like at every school or academic program I was ever part of, starting at the age of seven, and seeing neurologists from the age of thirteen.  It meant freezing in place at school while teachers watched children jump up and down on my hands — “It doesn’t hurt her,” the kids said.  It did hurt.  It meant freezing with fixed, dilated pupils while staring straight into a light source, after becoming super overloaded, and while everyone including teachers noted the situation, nobody even called an ambulance.

It meant growing up and finding ‘support groups’ for people with disabled siblings.  And trying them out.  And becoming utterly disgusted at the things that people were supposed to think about their disabled siblings.  And realizing that the family dynamic where there’s one disabled person and everyone else is nondisabled, bore no resemblance to my family dynamics and that it would not help me at all to be in an environment full of people who thought that sibling support groups were where it’s at.  

My family is different.  I didn’t know how different until I grew up.  I didn’t realize that most families didn’t have a close to 100% disability rate.  I realized I was fortunate not to grow up in the eugenics era, and that my family was lucky that most of them escaped it.  (All but a great-aunt with “cretinism” — that’s what they called it — who met a man with a similar disability and had trouble marrying him because everyone was afraid they’d have babies like themselves.)  Now there are stories coming out I didn’t know about growing up, about great-aunts forced to give up their children because they were in the psych system and weren’t considered capable of raising them properly (which may have been true, or may not have been, I don’t know).  Things I didn’t know because nobody talked about it.

Disability wasn’t something you talked about in our family, much.  Disability was something you lived.  It would make no more sense to discuss disability in depth than to discuss hair color in depth, as far as people were concerned.  Sometimes you’d hear someone referred to as ‘slow’ or ‘tetched’, but mostly people just got on with our lives.

There was ableism, too, plenty of it.  My grandmother, upon finding out I was in the  psychiatric system, wouldn’t let me sleep in the house after we’d been invited a long way to do just that.  She made us sleep in someone else’s trailer.  My uncle wouldn’t let me near his children unsupervised.  Just because people are disabled or accustomed to being around lots of disabled people, doesn’t mean they’re not bigoted.

But my family is like the poster child for the Silicon Valley autistics.  Autistic father, neurodivergent mother with a strong history of autism in her family, move there to find technician jobs, have three kids, two autistic, one ‘hyperactive’, and each person in the entire damn family is neurodivergent in more than one way, and physically divergent too much of the time.  I came up with the theory that it was people moving there for the jobs, long before the article ran in Wired Magazine.  It was an obvious thing to think.  Whether it was right or not, who knows, but in our family it certainly seemed to fit.

(My father’s family were Okie migrants to California who later moved to Oregon where they met my mother.  My mother’s dad came from, I think, Arkansas to California to Oregon, and the rest of my mom’s family were Minnesota Swedes who moved to Oregon.  But my parents moved to Silicon Valley specifically to find work my dad could do, and he flourished there in a rare period where poor and working-class people actually had an opportunity to temporarily climb the ladder.  They lost all their money, they’re now poorer than I am, but fortunately they’ve never needed money to be happy.)

So… yep. Walking stereotype here.  I’m a hyperlexia stereotype and I’m a Silicon Valley autie stereotype.  Probably lots of other walking stereotypes too if I put my mind to it.

tl;dr:  My family fits the stereotype of people with a history of autism in their family, or who were autistic themselves, who moved to (or near) Silicon Valley in California in order to find technical jobs, and then created this giant ‘autism cluster’ of children born who were autistic.  Which includes me and my brother, two out of three kids autistic, all kids, and parents, neurodivergent.  Coming from a neurodivergent and otherwise close to 100% disabled family gave me a lot of perspectives that people who are the only disabled family members don’t tend to acquire.

2:53pm September 7, 2014

theshriekingsisterhood:

Shoutout to all disabled people for whom it is difficult, painful, or even impossible to maintain personal hygiene. Shoutout to everyone who struggles with taking showers, who forgets to brush their hair, who don’t have enough spoons to do laundry as often as they want to. Shoutout to disabled people who struggle with personal hygiene while also belonging to groups for which “presentability” is a large part of avoiding persecution.

You are good, and you are wonderful, and you are dignified. The people who would make fun of you could never be as strong as you are.

Thank you.  I needed that.  Lifelong gotten shit for hygiene problems.  Lifelong can’t do anything about it (beyond what caregivers can do).

9:40am September 7, 2014

andreashettle:

bronweathanharthad:

a list of things that are important:

  • canonically disabled characters
  • disabled actors playing disabled characters
  • disabled characters who are treated as a person and not as a laundry list of symptoms
  • characters who remain disabled throughout the entire story
  • abolishing the belief that disability is a tragedy and that being miraculously cured is the only happy ending
  • examining disability in all groups, not just white cishet men
  • abolishing the use of ableist slurs
  • condemning characters that use ableist slurs
  • explicit, respectful disability representation
  • disabled characters who have some kind of connection with other disabled characters, including people who share the same disability as them
  • Disabled super heros whose super power does not basically just cancel out the disability (aka Dare Devil)
  • Condemning characters who don’t accommodate the disabled character’s accessibility needs
  • NOT using disabilities as metaphors for a broken spirit or a twisted soul, etc.
  • Deaf people who are NOT champion lip readers, because although a few are that good at lip reading most are not.
  • Having multiple disabled characters in the same story … because one out of seven people on Earth are disabled, so why should there be just one lone disabled person in pretty much any cast significantly larger than seven?
  • People who have multiple disabilities, because not all disabled people have just one disability, many of us have multiple disabilities and we deserve representation too
  • Showing the kinds of micro aggressions that disabled people face in real life, because that is a pretty huge part of our lives and you can’t really reflect what our lives are like while pretending that all disabled people live in this utopia where all their accessibility needs are always met. Like, no, the people around a deaf person do NOT always automatically learn sign language, occasionally a few people might learn a few signs but most don’t. And the people around a deaf person are NOT always going to be infinitely patient when they don’t immediately lipread everything.  And they are NOT always going to explain to the deaf person what they have missed.
  • But also showing why these micro aggressions are wrong.