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.

Disabled people go to disability conferences — and everywhere else, too.

I’ve been going to a lot of disability conferences recently.

Almost every presentation I’ve attended has been addressed solely or primarily to a nondisabled audience. This is odd, because there have also been very visibly disabled people at all of these conferences. (And since all the audiences contained me, they also always contained at least one disabled person.)

Even when there were very visibly disabled people in the room, people still did this. Even at conferences that have been running for a long time and *always* have multiple significantly disabled people present, people still addressed their presentations to a nondisabled audience.

For whatever reason, very few people prepare remarks with the assumption that disabled people also want to learn more about disability. I don’t know why this is, but I do know that it’s a pervasive problem.

I’ve observed this problem even in lectures on the importance of presuming competence and remembering that disabled people have things to say. Even in that context, I’ve heard “you and I can do x, but they…” or “you and I can assume that others will listen to us, but they…”. And this is even when there are multiple people in the room who are visibly disabled and unable to speak.

It’s very strange. There’s some kind of cultural bias that causes people to ignore the perspectives of disabled people so automatically and thoroughly that they forget that their perspectives even exist. It can be hard to notice that you’re doing this. It’s worth putting active effort into acknowledging disability perspectives. Having the right intentions isn’t usually enough.

When you’re lecturing on disability, it’s worth thinking about questions like:
Am I saying “you and I” or “we” to mean “people who don’t have a particular impairment”?
If so, how can I use the example I want to use without making disabled audience members “they”?
Am I addressing the disabled people in the room, or am I assuming a nondisabled audience?
Am I saying anything that is relevant to or targeted to the disabled people in the room?
If not, why not?
Is there a way to fix that?

Actually, this is good practice even if you’re *not* addressing disability-related topics. Disabled people are everywhere. We have the same range of interests as anyone else. There’s likely a disabled person in your audience (especially if your remarks are recorded, but even if they are not.) It’s much better to assume that there are always disabled people in the audience, and to speak accordingly.

Tl;dr: Disabled people exist, and we go to disability conferences — and everywhere else, too. If you’re giving a talk, assume that disabled people will be in the audience, and prepare your remarks accordingly.

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).

Asking the right questions

So, there are good and bad ways to use two-choice questions.

There’s the way that’s trying to get people to say particular things and make people comply. Like this:

“Are you ready to look at me when you talk, or should we continue this later?”

That kind of question forces an answer that one way or another, is the answer the questioner wants. It makes it so someone can’t say what they really want to say, so they can’t say “I don’t want to look at you but I do want you to listen to me”.

And there’s the way that’s trying to get actual communication, trying to help someone say *what they actually want to say*.

Like this:

“Do you want to talk right now, or stop talking?” if it’s an actual attempt to figure out whether someone wants to have the conversation.

And they look the same, in certain ways. 

But they’re not. They’re not.

Because only one allows someone to say no. Or to give a response the questioner doesn’t want.

And if you can’t say no, it isn’t communication.

And I didn’t explain that clearly in my post about this.

And it got thousands of notes.

And I’m scared that some people thought I was endorsing the former, the kind where it’s fake communication that confuses vulnerable people about what communication is.

No no no not that.

I mean communication. Not compliance-getting.