You can’t fight stigma by making disability unspeakable

I’ve noticed that a lot of well-meaning people try to fight disability stigma by making disability unspeakable.

The logic seems to be like this:

  • They notice that when people are seen as disabled, they are respected less. 
  • They call this stigma, and think of stigma as a very bad problem. 
  • They then try to figure out how to make stigma go away so that people will be respected more.
  • They think that if no one was seen as disabled, there would be no stigma.
  • They try to get people to pretend that disability doesn’t exist.
  • They expect this to somehow improve the lives of people with disabilities. (On the grounds that if everyone ignores disability, there will be no disability stigma.)

This approach doesn’t work. Disability exists, whether or not anyone is willing to acknowledge it. When we try to fight stigma by ignoring disability, we send the message that disability is unacceptable.

When people are made to pretend that their disability does not exist, they learn that basic things about their body are unspeakable. When people are made to pretend someone else’s disability doesn’t exist, they learn that if they stopped ignoring basic things about them, it would be impossible to keep respecting them. These are not good lessons.

If you need to pretend someone isn’t disabled in order to respect them, you’re not really respecting them. You’re giving imaginary respect to an imaginary nondisabled person. People with disabilities deserve better. People with disabilities don’t need fake respect handed out as a consolation prize. People with disabilities need to be treated with real respect, as the people they really are.

If we want to fight stigma, we have to get real. Disability exists, and pretending that it doesn’t just makes the problem worse. Stigma is not caused by noticing disability; stigma is caused by ableist attitudes towards disability. It is ok to be disabled, it is not ok to be ableist, and it is upon all of us to build a culture that understands that.

Open letter to sick kids and disabled kids.

Dear sick kids, dear disabled kids,

You may be facing a lot of adults who want to believe that your therapy is fun. You may feel differently. You may not be having fun. That’s ok. You’re not failing. You don’t owe it to anyone to enjoy the things that are happening to you.  

Even if you think the therapy is important, you might not think it’s fun. You don’t have to think that it’s fun. Your feelings are yours, and your feelings matter. No one has the right to tell you how to feel. No one has the right to insist that you think something is fun.

If you don’t think the therapy is a good idea, you have the right to have that opinion. Your parents or other adults may be able to decide what treatments you get. They don’t get to decide what you think, or how you feel. They can’t make things fun by loudly insisting that they are fun, or by making you smile.

It’s ok not to think that your breathing treatments are a fun game. Even if your mask is fish shaped. Even if you put frog stickers on it. Even if you had a lot of fun picking out the stickers. Even if you know that you need it in order to breathe properly. Push come to shove, it’s still a breathing treatment. You are under no obligation to enjoy it. If you’re not having fun, then it’s not fun. Even if people make you smile.

It’s ok if you don’t think a purple hospital gown means that the hospital is fun. Even if you love purple. Even if you put your favorite sparkly heart stickers on it.   Even if you want the operation or procedure you’re having, you don’t have to think that what you’re doing is fun. Even if the volunteers and play therapists are really nice. You’re still in the hospital, and it’s ok to feel however you feel about it.

It’s ok to dislike the tracing exercises your occupational therapist makes you do. Even if she says that they’re really fun and that she loved them when she was your age. It’s ok to think of it as work rather than fun. It’s also ok to think it’s a waste of your time. You are not her, and it’s not ok for her to tell you how to feel. She is not the boss of your feelings, or your likes and dislikes. You are under no obligation to have fun.

It’s ok to dislike singing silly songs with your speech therapist. Even if he tells you in an excited voice all about the great new conversation starter iPad app, it’s ok not to think it’s fun. Even if other kids seem to like it. Even if there are fun prizes for cooperating and smiling. Even if people frown when you don’t seem happy enough. You don’t have to think anything is fun. Your feelings are yours. You don’t owe it to him to like the activities you do, even if he expects it from you.

It’s ok to dislike the sensory diet an occupational therapist puts you on. You don’t have to like being brushed.You don’t have to like weights or weighted blankets.You don’t have to believe that squeezing a fidget toy is better than rocking, and you don’t have to think that chewing a tube makes the lighting and noise any less painful. Your feelings are real. If you like something, that matters, whether or not anyone else thinks it’s important. If something hurts, your pain is real whether or not anyone acknowledges it.

And so on. If you’re sick, or you’re disabled, or you’re both, there are probably a lot of things happening to you that aren’t happening to other kids. It’s ok to have whatever feelings you have about that, even if others desperately want to believe that you think all of it is really fun. It’s ok for you to think that something isn’t fun, even when adults speak in enthusiastic voices, put stickers on things, use fun toys, or whatever else.

It’s ok to think something is fun, and it’s ok to think it’s really not fun. It’s also ok to find something helpful without finding it fun. You have the right to like what you like, and dislike waht you dislike. Your feelings are your own, even if you have to smile to get people to leave you alone. 

It’s ok to like things, and it’s ok to dislike things. You are a real person, your feelings are yours, and your feelings matter. Illness, disability, and youth don’t make you any less real.

Document communication

This post may not apply to all of you, but I know a lot of you work with people whose communication is impaired, so:

I’ve come to believe that if others are reporting that someone has no communication, it is important for others responsible for their care to do everything in their power to counteract this.

Being perceived as noncommunicating is dangerous. It can prevent someone from ever being listened to. It can also lead ableists to withhold medically necessary care because they believe that person’s life is not worth living. 

You can’t reliably assess someone’s receptive communication unless they have expressive communication that you can understand (and even then, it’s difficult). Being unable to respond is not the same as having no understanding, and it’s wrong to assume that people don’t understand. So, really, no living person should ever be described as having no communication. That may not be in your power to fix, but keeping it in mind will help you to treat people better.

Beyond that, most people who are described as having no expressive communication actually do. Don’t be led astray by someone else saying that someone is “noncommunicative” or “nonverbal”. Unless the person they’re talking about is in a coma, they’re probably wrong. If you look for communication, you will be able to listen to them better, and also better able to protect them by documenting their communication. So look for it, and document it, and tell other people who care for them. Their life may depend on it, and the way they’re treated almost certainly does.

Some specific things you can look for:

  • Do they turn their head when you come in?
  • Flap their hands when they’re angry or happy?
  • Vocalize?
  • Say words that may or may not be communicative? 
  • Try to get out of their chair?
  • Sing?
  • Become more calm or agitated when you speak to them?
  • Make eye contact?
  • Say numbers?
  • (There are any number of other things)

Everyone with voluntary control over any part of their body communicates. If you’re working with someone, learn their communication and do what you can to make it known that their communication exists and matters.

Remembering that people with disabilities have always existed

Content warning: This post talks about institutionalization in graphic terms. Proceed with caution.

Sometimes people say things like this:

  • “When I was a kid, no one had all these learning disabilities and syndromes!”
  • “We’re all so much sicker these days. I never heard of all these diseases until recently.”

And – people who say this? You know why you never met anyone like this as a child?

Because, when you were a kid, people with learning disabilities, syndromes, illnesses, etc weren’t allowed to go to your school. A good percentage of them weren’t even allowed to live in your town.

They were kept away from people like you, and kept in horrifying conditions, so that you and other more socially valued people wouldn’t have to see them or know they existed. (It’s not your fault. You were a child and didn’t know. But it was done in your name, partly.) And a lot of them did not survive childhood because they were not given the care that would have made it possible. And this isn’t over. This still happens.

(And people with disabilities are still afraid of it happening to them).

But thing are getting a bit better – or, more accurately, people who have been fighting this evil for decades are starting to win.

So, these days, many children like those who were carefully kept away from you and your peers are allowed to grow up in families. In schools. As part of their communities. Visibly. And, this means more of them are suriving childhood.

And some adults with disabilities are now treated as adults and allowed to acknowledge disability without forfeiting adulthood. Not everyone, not yet. Not enough. But some. More than there used to be, fewer than there should be.

People with disabilities have always existed. And the fact that everyone now has to notice that they exist is a dramatic improvement. It’s a good thing that you see more people with disabilities now. It means some of them aren’t brutally hidden in institutions. Your children are growing up in a better world than you did. Remember this.

Power is not evidence: a rallying cry against dehumanization

Content warning: this post contains somewhat graphic examples of horrible things that happen to people. Proceed with caution.

There is a lot of abuse in this world. A lot of people have far more power over others than they ought to, and even necessary power is misused routinely. Even good people with good intentions harm routinely others by misusing their power.

Often, when force is used against people, they’re presumed to have deserved it. Or worse, to have deserved it because they’re a Kind Of Person who inherently needs to be treated that way. And this is bad. It allows abuse to go unchallenged and even to seem noble – in cases where if people would just *look*, they’d understand.

For instance:

Sometimes people are punished. This is not, in itself, evidence that they did something wrong, or that they are bad, or that they were behaving substantially differently from others. It’s evidence that someone powerful decided to punish them. And that’s all.

Sometimes children are put into segregated programs. This is not evidence that they benefit from segregation, or that they are a kind of person who needs that. It’s evidence that someone powerful decided that kids Like That don’t belong around the real kids. And that’s all.

Sometimes teenagers are sent to harsh programs for bad kids. This is not evidence that they were bad, that they deserved it, that the programs benefited them, or that they are fundamentally different from other kids. It is evidence that someone powerful decided to send them to a program. And that’s all.

Sometimes people are institutionalized. This is not evidence that they are dangerous. It is not evidence that they need to be locked up for their own good. It is not evidence that they are a kind of person who can’t be free. All it’s evidence of is that someone powerful decided they weren’t really real, and needed to be separated from the real people. And that’s all.

Sometimes adults are described as having no mind or having the mind of a little child. This is not evidence that they are incapable of thought or communication, or that they’re a kind of person whose choices don’t matter. It is evidence that someone powerful decided not to listen to them. And that’s all.

Power is evidence of power. And that’s all. And keeping that in mind makes it possible to notice what is actually going on, and to treat people a lot better.

And when you understand that power is not evidence, there’s the horrible part, because you have to notice the abuse and the horrors you used to be able to ignore.

But there’s also the wonderful part. Because you realize that everyone is real, and that nobody needs to be treated as an unperson. And that this horrible brutality and dehumanization is completely unnecessary *and that it can be stopped*.

And if you remember, if you can keep in mind that everyone is real and that power is not evidence – you can become trustworthy. Some people are the targets of pervasive dehumanization efforts, and – if you are able to see this as absolutely unjustified, on a core level, if you can be trusted to see others as real *all the time*, you can prevent these efforts from working.

This is an important skill to acquire. It can save lives (sometimes, including your own).

Autism awareness for aides

flannelfrog asked:

I recently got a job offer to be an in-school aid for a gradeschooler I know with aspergers and I’m genuinely afraid to take it because, while I have teaching experience, I’ve never been an aid before. I’m afraid I’ll do something wrong and mess the kid up for the rest of his life. Do you have any advice for me?

Several piece of advice:

First, shift the way you’re thinking about this.

The problem before you is how to do right by a kid in your care. Thinking in terms of wanting to avoid doing something wrong and messing the kid up for the rest of his life is going to make it harder for you to do right by him.

You’re going to do things wrong (you’ve done things wrong in every teaching job you’ve had, it comes with the territory); and it’s going to be important for you to acknowledge and fix your mistakes. Making possible mistakes, even serious ones, a referendum on whether you are a good person, makes it a lot harder to do right by others. I’ve written about that before, here.

Treat him as a person

  • Almost universally, autistic people are treated as though they aren’t quite real, especially by caregivers
  • Often, they think of this as looking past the autism to see the real person
  • But the autism is part of who he is.
  • Don’t attribute some things to him, and others to the autism. He is real all the time.
  • He is a real person. Already.
  • Your job is not to cure him. Your job is to support him and help him to develop his abilities. Learning to do more things will not make him any less autistic, nor should it.
Do not try to make him indistinguishable from his peers
  • Because, seriously, what kind of a goal is that?
  • He’s worthwhile as a person, and he’s different from most other people, and it’s ok.
  • He has better things to do with his time than fake normal.
  • Being able to do awesome things is way better than being able to look normal while doing pointless things
  • It’s ok to be different.
  • Don’t pretend that he’s really just like everyone else, or that he will be when he grows up.
  • One of the most important things you can teach an autistic child is that it is ok to be autistic

Forget everything you think you know about the difference between autism and Asperger’s syndrome:

  • People whose diagnosis is Aspergers syndrome are autistic
  • Autistic people who can speak are disabled
  • There isn’t actually any fundamental difference
  • Except that people considered autistic are often seen as incapable, and people considered to have Aspergers are often seen as faking their difficulties
  • Assume disability and ability, and that you will have to figure out how that works for the person you’re working with

Learn how he communicates.

  • All autistic people have some sort of atypical communication
  • Some autistic people are really good at hiding it, and looking normal at the expense of understanding what is going on.
  • Autistic children, particularly boys, often pretend to be acting out in order to mask disability. Be mindful of this possibility.
  • A good percentage of the time, when autistic people repeat things over and over, they are trying to communicate something and aren’t being understood. Be aware of this, and learn how to make communication possible in this situation.
  • If he seems not to understand something, do not get angry and assume he’s just being defiant or lazy
  • Some things are really really hard to understand, even though they seem simple to people with typical development
  • For instance, an autistic child who has been isolated might find fiction other kids their age understand completely incomprehensible because they can’t relate to the experiences and relationships it describes

If he makes repetitive motions, assume they are important:

  • A lot of autistic people rely heavily on motion to think well
  • Or to communicate
  • Or to understand things
  • Or to find words
  • Or to regulate themselves.
  • If you prevent an autistic person from making repetitive motions, you’re probably also preventing them from doing things like understanding what’s going on, communicating, and learning self-control and interaction.
  • Do not value a typical affect over learning and communication.
  • Do not say “quiet hands” for any reason ever. (Unless you’re saying something like “people shouldn’t tell you ‘quiet hands’”)

Do not make him follow rules the other kids are allowed to get away with breaking

  • Because that’s unfair, and humiliating
  • And it also prevents peer relations
  • It also prevents him from learning how rules actually work, which is a vitally important skill, especially for people who are likely to spend large parts of their life subject to arbitrary decisions made by people with too much power over them

Do not confuse him about consent, and help him learn what consent is

  • If something is an order, do not phrase it as a request. Doing so teaches people to be incapable of saying no.
  • Ask a lot of questions that actually are requests, and go with what he says, even if it’s not the answer you wanted.
  • If he always says yes when you ask him things, assume this is because he has been taught to be incapable of saying no
  • Ask questions in ways that remind him that saying no is possible
  • Or questions in ways that don’t seem to create a compliant option and a defiant option at all.
  • For instance “do you want to stay inside today, or would you rather play on the swings?”
  • But questions that are real. Not forced choices in which each option is basically compliance.

Support him in navigating the difficult and often hateful world he lives in

  • Do not make him play with kids he dislikes, even if this means he doesn’t play with anyone
  • There are worse things than being alone. Being surrounded by people who everyone insists are nice and your friends, but who actually don’t think you’re real or treat you well is much worse than honest loneliness.
  • It’s possible, and likely, that there are very few kids, or even no kids at all, in his group who it is a good idea for him to spend time with
  • And even if you think he’s wrong about this, it’s a decision he should be making for himself (and his judgement is probably better than yours)
  • When kids or adults do bad things to him (and they will), you usually won’t be able to make them stop. You should tell him that what they’re doing is wrong, and that it’s not his fault.
  • Knowing that it’s wrong, and that others know it’s wrong, helps a lot.

Some things you should read:

  • Ballastexistenz From the beginning. Every post. It has a lot of fundamentally important things about power, and dehumanization, and about seeing people as real. This blog has a lot of the best things that have ever been written on this topic.
  • Rolling Around In My Head is also a really good blog, written by a disabled man whose professional work is supporting people with disabilities. He says a lot of things worth knowing. Also his book Power Tools is important for understanding how this power dynamic works – and your environment and training will put pressure on you not to understand it.
  • Loud Hands: Autistic People Speaking is a really important book about autism and the world written by insightful autistic people. Buy it and read it and understand it, and it will help you to do right by this boy and others