Absolution seeking behaviors

Dear disability professionals,

We need to talk about your absolution-seeking behavior. When disabled people go to conferences, disability professionals flock to us and ask us to help them feel good about themselves and their field. This isn’t ok. It needs to stop, and you need to be part of stopping it.

This is never ok, but it’s especially bad when it’s a defense against listening. Disabled people often put themselves on the line to bear witness to the problems in the disability field. When we do this, the last thing it’s appropriate to do is seek out validation. It’s a time for reflection, not absolution.

Too many disabled disability advocates are having some version of this conversation with disability professionals:

  • Disabled Advocate: Your field is doing serious harm to disabled people. 
  • Disability Professional: Tell me about it! They’re all awful. But not me, I’m the exception. I’m one of the good ones.
  • Disabled Advocate: How?
  • Disability Professional: I am the exception because I recognize the uniqueness of individuals by doing Something Disabled Advocates Oppose and Another Thing Disabled Advocates Lobby Against. I’m sorry you’ve had such bad experiences with other people in my field, there are a lot of bad apples!
  • Disabled Advocate: Actually, the things you’re describing are the things we object to in your field, and here’s why.
  • Disability Professional: I agree with you! That’s why I do those things. I’m one of the good ones.

Please stop doing this to disabled people. Please stop assuming that you’re one of the good ones and that what we say doesn’t apply to you. Everyone seems to think of themselves as an exception because they have helped some people or had some sort of good intentions.

Please keep in mind that it is not remotely unusual to do good things in the disability field. Most people who have done great harm have also done some good. That doesn’t make you special, and it doesn’t erase anything you’ve done to disabled people. Good intentions don’t heal broken bones or broken dreams. Don’t seek absolution from us. Listen to us, acknowledge the problems, and find ways to do better.

Sincerely,
The disabled presenter who you called inspirational

Autistic people can have friends

One reason I started writing this blog is that I got tired of seeing social skills programs teach autistic people that they have to become normal in order to have friends.

It’s not true. There are a lot of autistic people who have friends without becoming remotely normal. Oddness and friendship are entirely compatible.

You can be autistic, seem autistic, and have friends who like you and enjoy your company.

Some people won’t like you, and that’s ok. Not everyone has to like everyone.

Some people will dislike you because they are bigoted against autistic people. That’s not ok, but it doesn’t have to ruin your life. Ableists don’t speak for everyone. Those people aren’t your friends. Other people can be.

You’ll probably always face ableism. Trying to be normal probably won’t make that go away; accepting yourself probably won’t make that go away either. You don’t need to change the whole world in order to have friends.

You can have friends as the person you are, in the world as it is now.

On bearing witness to the humanity of disabled people and the destructiveness of ableism

One of the most powerful things that we can do is to bear witness to the humanity of disabled people and the destructive consequences of ableism. When we bear witness to our humanity and to the things that others do to us, it changes the conversation. Our stories are powerful.

Some people have the privilege of being largely untouched by ableism. (Or being untouched by a particular kind of ableism.) Most people who are privileged in this way are also unaware of how deeply marginalized disabled people are being harmed. (I’m using disability as the primary example here, but this actually applies to ever kind of marginalization.)

We are dehumanized, and a lot of people don’t notice that it’s happening. They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them. When people learn how to notice, they often start caring.

Bearing witness to our humanity means making it impossible to discuss disability in the abstract. It means making people have to notice that when they talk about disability, they’re talking about *actual human beings*. We do things. Some of us have jobs. Some of us are artists. Some of us write. Some of us are married. Some of us are fans of TV shows. Some of us are experts in our fields. Some of us cook. All of us matter. Making people notice us as real human beings changes the conversation about disability.

Speaking out about the consequences of ableism also changes the conversation. When institution survivors bear witness to what happens in institutions, it becomes much more difficult for people to believe that institutionalization is good for disabled people. When people speak out about what authoritarian childhood therapy did to them, it’s harder to pretend that compliance training is harmless. When people speak out about electric shock, it is much harder to pretend that people who are tortured with electric shocks think that it makes their lives better.

When disabled people talk about what it is like to learn the name of their disability by eavesdropping and googling, some parents listen. Likewise, when disabled people talk about what it’s like to grow up without accurate language for ourselves, some parents come to understand the importance of talking to children about their disabilities.

Bearing witness also matters to other disabled people. We often learn to overlook our own humanity. We often learn to disregard the things that others have done to us. When other disabled people are unapologetically human, it’s easier to see ourselves as human. When other disabled people talk about the harm ableism does, it’s easier to remember that these things shouldn’t happen to us.

This doesn’t always work. When people with disabilities bear witness to our humanity and to what happens to us, we often get hostile responses. Even when some people are listening, there are usually also angry people who are not. Even when people are eventually willing to listen, they are often initially angry and mean. Those of us who talk about these things pay a price for doing so. Everyone has the right to decide for themselves whether this is a price they’re willing to pay in a given situation.

Your stories belong to you. Stories can be a powerful force for liberation, but you are not a liberation object. You are a person. You have the right to decide whether or not to tell your stories. If you choose to tell stories, you have the right to decide which stories to tell, how you want to tell them, and who you want to tell them to. (Including, whether or not you want to answer questions that people ask you.) You can also change your mind. Doing some advocacy work doesn’t make you an advocacy object, and it doesn’t strip you of the right to say no. No matter how politically or socially useful your stories are, they belong to you.

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.

A problem with “behavior is communication”

In certain contexts, just about everything a disabled person does will result in someone following them around with a clipboard, taking notes on their behavior, and designing a behavior plan for them.

This is often called ‘listening to what the behavior is communicating’ or ‘keeping in mind that behavior is communication.’

I know that nothing I’ve ever done was intended to communicate ‘please put me on a behavior plan’. If anyone asked me, they would know with certainty that I don’t want them to do anything of the sort.

I’m not alone in this. Very few people would willingly consent to intense data collection of the kind involved in behavior analysis. Far fewer people would willingly consent to the ways in which that data is used to control their behavior. 

A lot of people never get asked. People do these things to them that very few people would willingly consent to — without asking, and without considering consent to be a relevant consideration.

Somehow, an approach that involves ignoring what someone might be thinking gets called ‘listening to what is being communicated’.

That is neither ethical nor logical. Behaviors don’t communicate; people do. If you want to understand what someone is thinking, you have to listen to them in a way that goes beyond what any behavior plan can do.

Collecting data is not the same as listening, modifying behavior is not the same as understanding what someone is thinking, and disabled people are fully human. 

Putting up useful signs

It’s hard to put up signs in a building that are useful to new people.

In order to put up useful signs, you have to know where everything is *and* understand what’s confusing to people who don’t already know.

The problem is, once you know where things are, it tends to feel obvious. It’s hard to remember what’s confusing and what needs a sign to be clear.

One way around this is to get a new person to help you to put up the signs. People who haven’t been around long enough to know where everything is can help you to figure out where signs are needed.

Another way is to keep a list of things that people ask for help finding.

Short version: If you want to put up useful signs, seek out ways to listen to people who need signs.

We need to be as good at lifting up as we are at calling out

In advocacy/activist space, we’ve gotten really good at noticing and naming oppression. We’ve gotten really good at criticizing the things that people are doing wrong, and demanding change. We’re also good at noticing organizations and people who shouldn’t be supported, and explaining why people shouldn’t support them.

This is important — and it’s not enough. We need to be equally good at noticing and naming things that *are* worth supporting. We need to be equally good at noticing what people are doing well, describing why their approach is good, and finding ways to support it. Calling out isn’t enough. We need to seek out things to lift up.

When we focus exclusively on finding things to call out, we send the implicit message that nothing good anyone is doing is worthy of our attention. But none of the work of building a better world happens by itself. It depends on the people who are putting the effort into doing the work. When we ignore the value of the work people are doing, we both harm those people and the work itself.

The work is hard, exhausting, and vital. It’s also often thankless — because we’re not acknowledging it in the way we need to be. Often, doing activism and advocacy means signing up for a life of being paid less than a living wage (or volunteering your very limited time), having your work ignored, and being noticed by your community only when people are angry at you.

This is particularly common when the work is done by marginalized people. Our culture socializes us to ignore the work that women and other marginalized groups do, except when we find reason to criticize it. This dynamic carries over into activism/advocacy spaces. It’s just as toxic when we do it as when corporations do it.

There’s nothing inevitable about this. We can make it stop. We can pay attention to the work people are doing, and we can show respect to the people doing it. We can describe the worthwhile things people are doing, and talk about why they should be valued. We can seek out ways to support what people are doing, whether that means donating, signal boosting, going out and voting, connecting people to each other, or any number of other things. By getting just as good at support as we are at call outs, we can make the world much better.

The drawbacks of anger, and some alternatives

A lot of things that are normal aren’t ok. It’s hard to notice this. We’re socialized to accept a lot of things that really ought to be unacceptable. When we try to object, we’re punished. Being punished for objecting is often humiliating and disorienting.

It’s hard to remember that these things are wrong even when others punish you for saying so. It’s hard to remember that you have rights when others act like you don’t.

One way to remember that things are wrong is to get angry about them. Feeling outraged can make it easier to hold onto your sense that, no, this isn’t ok, and yes, it is ok to object.

Unfortunately, the price of rage is high. Rage hurts. It’s physically unpleasant, physically exhausting, emotionally draining, and makes it hard to think clearly. The physical and emotional exhaustion from anger makes it harder to do other things. The fog of anger can lead to mistakes that make it harder to remember after the fact that you were justified in objecting. Rage is better than nothing, but there are other strategies that don’t hurt as much.

One thing that can help is to develop your understanding of the situation over time. If you learn to understand what you’re angry about and why, it can make it possible to use understanding rather than anger to stay oriented.

Questions like these can help:

  • What am I angry about?
  • Why am I angry about that?
  • What happened that I think is wrong?
  • Why do I think it’s wrong?

For instance, say I’m in class, we’re doing an activity, I’m not able to do the activity, and I’m feeling angry. We’re writing thoughts on big paper, and I can’t do handwriting well enough to participate. In that situation, I might think:

  • Why am I angry?
  • I’m trying to participate and failing over and over and that’s intensely frustrating.
  • Why am I angry about that?
  • Because I’m sick of being left out all the time.
  • What happened that I think is wrong? 
  • The teacher knew about my disability and didn’t do anything to accommodate it when they planned the activity. 
  • When I pointed out that I couldn’t participate, they didn’t do anything to fix it.
  • Why do I think that’s wrong? 
  • Because I have a right to be here, and the teacher is supposed to be teaching me. 
  • I’m a student here, and I have the right to learn the material and be part of the activities we’re using to learn it.
  • This is disability discrimination, and that’s wrong.

Then, the next step in using understanding rather than anger is to notice that something is wrong before you start feeling enraged. Sometimes that can make it possible to fix the problem without having to get to the point of outrage. It can also make it more possible to decide when to fight and when not to.

For instance, take the class activity. If I remember that I have the right to be there and that it’s the teacher’s responsibility to teach me, this might happen:

  • I go to class and see that there is big paper on the walls.
  • I remember that I can’t do big paper activities.
  • I remember that I have the right to participate in educational activities.
  • I remember that I have the right to learn the material.
  • I ask right away “Are we doing a big paper activity today? How will I participate?” 
  • At this point, I’m annoyed, but not outraged, and able to assert something without it hurting so much.

They may or may not respond the right way — and I might still get really angry. But if that happens, I can repeat the strategy again, figure out what I’m angry about and why. Then I can get further without depending on anger the next time. (Even when you can’t win or fix the problem, it’s still often possible to use that kind of strategy to stay oriented without rage. I have more posts in the works about that specifically.)

Anger isn’t a failure. It’s ok to be angry when unacceptable things are happening. It’s also ok *not* to feel physically angry. Anger hurts, and you don’t owe anyone that kind of pain. You don’t have to be pushed to the point of rage in order to be justified in objecting to unacceptable things.

Sometimes it might help to explicitly remind yourself of this. Some affirmations that have sometimes worked for me:

  • I don’t have to hurt myself to prove that this is wrong.
  • It’s still wrong if I’m calm. 
  • It’s still wrong if I’m not crying and shaking. 
  • It’s still wrong if my heart isn’t pounding.
  • Even if I’m ok, the situation isn’t ok.
  • Even if I’m ok in this moment, it’s ok to object to a situation that’s hurting me and/or others.

It also helps not to beat yourself up for getting angry. Anger in the face of outrageous things isn’t a failure. No strategy can completely replace physical outrage for anyone. Holding yourself up to impossible standards won’t help. Working on your skills at staying oriented in other ways will.

These strategies are harder to learn and harder to use. They also make it a lot more possible to resist and stay oriented without hurting yourself. It’s not all or nothing — any skills in this area help, and it gets easier with practice.

Activism must not be derailed by behaviorism

Behaviorist ideology says that there are four basic reasons people do things: to get things/activities, to get pleasant sensations, to avoid something they dislike, or to get attention.

All of these are real reasons people do things, and it’s useful to keep them in mind. It’s also important to remember that they are not the only reasons people do things. People also have thoughts, feelings, and values.

This behaviorist framing assumes that human beings are fundamentally amoral and selfish.  Behaviorism has no room for courage, integrity, or concern for justice. In real life, values matter.

For instance: People who would not steal to support themselves will put their lives on the line to protest cuts to Medicaid. People who find it humiliating to be publicly praised as ~inspiring~ will call congress to fight bad policies, including bad policies that affect groups other than their own. There’s more going on than attention. Values matter.

In activism and advocacy, it’s often useful to show others that it’s in their interests to support our policies. (Eg: “Your constituents care about Medicaid, and you’ll lose your seat if you vote for a bill that would cut it”, or “No matter how responsible you are, you could get sick tomorrow and need access to Medicaid.”

It’s *also* useful to show them that the policies matter within *values* they already care about. For instance, if someone cares about religious freedom, it could be useful to point out that institutionalized people lose access to their houses of worship and other things they need in order to practice their religion on their terms. If someone cares about encouraging people to work, it could be useful to point out ways in which Home and Community Based disability services make it possible for people to work.

It’s also important to make a case for our values more broadly. People don’t understand what ableism is and why it’s bad. Many people are receptive to learning, if it’s explained in a way that they can understand. It’s not just about self-interest. It’s also about values. People can understand right and wrong, and act accordingly, whether they are marginalized or privileged.

Privilege doesn’t need to prevent someone from being a good person and doing the right thing. There’s more to life than behaviorism and self interest. People are capable of caring about their values more than they care about enjoying the advantages of privilege.

Short version: Behaviorism reduces everything people do to self-interest, with no room for values. Activism based solely on privilege analysis falls into the same mistake. We need to keep in mind that all people are capable of learning to tell right from wrong and act accordingly. We need to make the case for our values, in a way that people can understand. Lives depend on it.

“It’s not just about wheelchair access”

I think that in disability discourse, wheelchair users face some fairly unique pressure to pretend not to be disabled. At the same time, wheelchair users are treated as the ultimate symbol of disability. In combination, I think there is very little space in which wheelchair users are allowed to talk about their actual experiences and needs. (Even in disability rights space.)

To some extent, all disabled people face some version of this. The thing I think is somewhat unique to wheelchair users is pressure to be the model of successful accessibility. There’s a misconception that accessibility is basically a solved problem for wheelchair users, and that we need to expand that model to all disabled people. This goes alongside a related misconception that the purpose of accessibility is to make disability irrelevant.

Wheelchair users face intense pressure to enthusiastically pretend that wheelchairs and ramps erase disability. This goes alongside pressure to have exactly the kind of disability that fits the story that others want to tell. The story goes: “Wheelchair users can’t walk. Wheelchairs and lifts and ramps solve that problem. If we had ramps everywhere, wheelchair users wouldn’t be disabled anymore.” The reality is much more complicated.

People get very angry when wheelchair users contradict this story. Wheelchair users are often not allowed to have access needs that don’t fit the story — and they’re also not allowed to have *abilities* that don’t fit the story. This anger is so intense that it’s dangerous for wheelchair users to stand and walk in public places. People also get angry at wheelchair users when a ramp is too steep, when it’s blocked, or when they insist that the existence of a lift isn’t good enough, they need to have the key so that they can actually *use* it. There’s not much room in the wheelchair access success story for talking about these realities.

There’s also not very much room in this success story for talking about the realities of growing up with a mobility disability. Children still grow up manhandled by therapists and pressured to learn to walk at all costs. Children still go through repeated surgeries aimed at fixing them. Children still get taught to allow adults to hurt them and touch them in ways that would be regarded as abuse if they were typically developing. Children are still pervasively excluded from educational and recreation activities and expected to bear it with a smile. Ramps and wheelchairs didn’t fix that, and accessibility advocacy should not make those things unspeakable.

The success story has even less room for talking about pleasure. Harriet McBryde Johnson said it better than I could, so I’m going to quote her:

“We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures. …

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body—imperfect, impermanent, falling apart—is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.”

McBryde Johnson, Harriet. Too Late to Die Young: Nearly True Tales from a Life (p. 255). Henry Holt and Co.. Kindle Edition.

Treating wheelchair users as a symbol of disability successfully erased has the effect of silencing wheelchair users. I think that a lot of us have been complicit in this silencing, and that we need to address this in disability culture. Partly for the sake of better solidarity with wheelchair users; partly because the silencing is hurting all of us.

I think that all disabled people face pressure to see ourselves as characters in a story about accessibility. Sometimes we’re expected to write the story. Sometimes we’re seen as characters in a story someone else is writing. Sometimes we’re supposed to believe that the story has already been written, and that all we have to do is get people to read the book.

I think that wheelchair users face particularly intense pressure to pretend that the story has already been written and has a satisfying ending. That’s not something any of us should envy. It’s not privilege. It’s silencing. And I think we need a lot less silence and a lot more solidarity. It doesn’t have to be this way, and it isn’t always this way. When we have space for honesty about the realities of disability, our communities are a lot stronger.

Wheelchair users are not a collective accessibility success story. Wheelchair users are people. None of us are stories. We’re all people. No amount of accessibility is going to make our bodies and brains irrelevant. Disability rights advocacy shouldn’t be about erasing difference. The point is not sameness; it’s equality. Accessibility is about building a world that treats us all as fully human, differences and all.