getting real

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.

We're just like everyone else — and we're also different

In some ways, people with disabilities are just like everyone else. In some ways, we are very different. Both sides of that matter. Bad things happen when either is overlooked.

We are different from everyone else in that our bodies work differently. Most people have bodies that can do certain things. Our bodies can’t do all of the things that most other people can do. That matters. Being blind means something. Being d/Deaf means something. Having an intellectual disability means something. Being autistic means something. Having a mobility disability means something. Fatigue means something. Depression means something. The way we move, communicate, think, and perceive the world matters. Thinking about the differences created by our disabilities allows us to think about how to live with them — and live well with them. These differences do not need to be cause for alarm — we’re just people, and we’re part of the world, just like everyone else.

We are just like everyone else in that we are human beings. Our bodies are important. We experience pleasure. We have feelings. When people hurt us, we feel it, and it matters. Injustices against us are important, and we have the right to resist. We learn for our whole lives. If we survive to the age of adulthood, we become adults. When we wrong people, it matters. We are able to love. We can reciprocate relationships, consideration, and efforts. And any number of other things. Basically, we are people.

We are different from nondisabled people in that we can’t assume that we will be treated as equals in any context. Few, if any, spaces are designed with the assumption that we will be present, or that our presence is important. A school with a wonderful reputation for supportive friendliness may be aggressively, or subtly, hostile to students with disabilities. A movie theater may not bother to unlock the accessible doors, or may not have accessible doors at all. Airline policies may make travel impossible. People who say they are our friends may see us as charity projects, possibly with the encouragement of teachers or therapists. Or any number of other things. The daily toll of unmet access needs adds up, especially when the barriers are unnecessary, especially when they could be easily removed if anyone cared to do so.

We often can’t even assume that our humanity will be recognized.  In our culture, we are surrounded by people who think that disability makes us less than human — sometimes even within disability community. Sometimes it’s subtle, and sometimes it’s blatant. Many of us grew up subjected to therapy that would have raised outcry if it had been done to a typically developing child. Any number of books and movies raise the question of whether death is better than disability. 

Conversations about disabled people often do not include us, and often do not even recognize that we have perspectives of our own. When disabled people are murdered by caregivers, the murderers often get more sympathy than the victims. Ethicists with tenure debate whether disabled people ought to be allowed to be born, whether medical treatment for people with disabilities is a good use of resources, and whether we’re really people after all. And so on. The dehumanization adds up, too.  Even when we are treated well, we live with the knowledge that people just like us are not. 

We are fully human, and it is wrong to treat us as subhuman. In that sense, and many others, we are just like everyone else. We are also different. We are physically and cognitively different from other people, and those differences are important. We are also treated very differently from others, and that experience is important too. All of these things shape who we are, and the skills we need to live well. Glossing over disability does not serve us. We can get a lot further if we are matter of fact about all of this, and face these realities honestly. 

Tl;dr People with disabilities are just like everyone else in some ways. We are different from everyone else in some ways. We are the same in that we are people. We are different in that our bodies work differently — and in that others treat us as subhuman. All of these things matter.

Open letter to disability professionals

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions. 

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are. 

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of.  We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals - please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

Optimism in the dark places

Sometimes, people who want to see themselves as optimistic say things like this to suffering people they encounter:

  • “Look on the bright side!”
  • “Cheer up!”
  • “It can’t be that bad!”
  • “It’s ok.”
  • “Smile, you’ll feel better!”
  • “You have so much to be grateful for.”

Sometimes people who say this kind of thing mean well, but it’s still degrading. It’s degrading because:

  • Sometimes things really are that bad
  • Refusing to acknowledge that doesn’t help anything
  • And when you try to insist to someone who is going through something awful that it can’t be as bad as they think, what you’re really doing is refusing to listen to them
  • Telling someone to shut up is neither kind nor optimistic

This is particularly the case if you’re talking to someone in a bad situation that is unlikely to get better, or which is at least unlikely to get better in the near future eg:

  • Someone who has a terminal illness
  • People who are facing systemic oppression of a kind that isn’t going to go away in their lifetime
  • Someone who is trapped in an abusive relationship they see no way out of

I think that there’s another kind of optimism that is much more helpful:

  • Acknowledge that things really are that bad
  • Don’t try to smooth them over
  • Identify things that make life worth living
  • Work on building and recognizing love (including, love people enough to acknowledge how bad things are without pressuring them to sanitize them for you)

“I can’t” is an important phrase

anonymous asked:

… I think it’s more empowering to say “I decided to stop” than to say “I can’t”. It’s OK to stop when there’s still a tiny chance that you might have been able to succeed.

realsocialskills answered

There are different reasons why people decide to stop doing things.

One reason is that they reach the conclusion that they probably aren’t capable of doing the thing. Probably 

That’s different than reaching the conclusion that they don’t want to do it, or that it’s not worth doing, or that they’d rather do something else.

Actually this reminds me of something I’ve seen - often disabled kids who can’t do something will pretend that they’re refusing to do the thing. And that they’re refusing to do the thing on purpose in order to provoke the teachers. When everyone involved thinks that’s what’s happening, things can get really bad really quickly.

(Particularly if the thing is something like a kid going nonverbal and pretending that they’re refusing to speak and are just making animal noises to be rude).

Inability to do things is real, and it’s important for people to know their limits and take them seriously.

Acknowledging limits makes it much more possible to do things than pretending not to have any.

Ignoring reality isn’t empowering.

And it’s legitimate to say “I can’t” when what you mean is “it’s possible that I might technically be able to do it, but it’s risky and dangerous, and I couldn’t function if I took that kind of risk routinely”.

(This is in fact a meaning of “can’t” used by people without disabilities all the time.)