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“It’s not just about wheelchair access”

July 10, 2017June 9, 2021 Real Social Skills

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.

For disabled presenters: Handling ableist laughter from your audience

July 7, 2017June 9, 2021 Real Social Skills

Disabled presenters tend to face really intense ableism. One way this plays out is that audiences laugh at us when we talk about serious things.

This happens particularly frequently when:

Nondisabled professionals or our parents are also on the panel, or presenting right before or after us.
The audience is primarily parents of disabled children/adults.
The audience is primarily professionals who work with people with intellectual disabilities.
We talk about a desire to be taken seriously.
We discuss our objections to being treated like children.
We describe being proud of a personal accomplishment.
We describe being treated inappropriately by a professional.
We describe how we felt as disabled children.

When audiences do this, it’s not nice laughter. It’s a way of asserting power. That laughter means “I don’t have to take you seriously”.

As a disabled presenter, it’s often possible to insist on respect. It’s easier said than done. It gets easier with practice, but the practice often hurts. Here are some things I’ve found helpful:

It can help to remind yourself that you know what you’re talking about, and the things you’re saying are important:

You’re presenting because you know what you’re talking about.
People should take your expertise seriously. When you talk about the things you know, they shouldn’t laugh at you.
Your accomplishments are not a joke. People should not laugh or be condescending about them.
People who treat you like a baby are doing something wrong. Your desire to be treated in an age-appropriate way is not a joke. People shouldn’t laugh at you for talking about it.

When an audience laughs at you, it can help to make it uncomfortable for them:

Don’t smile, and don’t laugh yourself.
Wait for the audience to stop laughing.
Wait a second before going on to make it feel awkward.
One option: Ask the audience “Why is that funny?” then continue.
Another option: Repeat what you said before people started laughing.

Try to avoid nervous laughter and nervous smiles:

It’s taboo for disabled people to talk about disability.
Talking about taboo topics can be embarrassing.
When we’re talking about embarrassing things, it can be natural to smile or laugh nervously.
If you seem embarrassed, the audience is more likely to feel like the topic is embarrassing and laugh to get rid of the embarrassment.
If you laugh, the audience is more likely to feel like it’s ok for them to laugh.

Making jokes on purpose:

Making jokes can be a way to control what people are laughing about.
This can be easier than getting them to not laugh in the first place.
In these contexts, it can be better to avoid self-deprecating humor.
It’s usually better to make jokes about ableism.
(This isn’t a hard-and-fast rule though, do what works for you.)

For instance, say you’re giving a talk about educational discrimination:

This is self-deprecating:
“I was this ridiculous little kid in third grade. I was so enthusiastic, but I couldn’t even read. I’d hold up the books and pretend. My imaginary friend may have stolen the cookies, but she sure didn’t read for me.”
This is making fun of ableism:
“My teachers kept assigning me worksheets that I couldn’t do. They kept making me read in front of the class, even though I could never do it. They kept telling me to just do it. And they say we’re the ones who lack empathy and theory of mind.”

Don’t beat yourself up when things go wrong:

Presenters/panelists with disabilities face intense ableism.
It’s going to hurt sometimes.
The problem isn’t that your skin is too thin; the problem is that people are hurting you.
A thick skin is still worth developing.
If an audience laughs at you, it’s their fault, not yours. They shouldn’t act like that.
It’s messed up that we have to develop skills at deflecting ableism and insisting on respect.
It’s also worth knowing that these skills exist and can be learned.
It gets much easier with practice, but no one succeeds all the time.
When a talk goes bad, don’t beat yourself up, and don’t blame yourself for the audience’s ableism.
You’re ok, they’re ableist, and the things you have to say are still valuable when they’re not valued.

These are some of the methods I’ve used to deal with audience ableism. There are others. What are yours?

Short version: When disabled presenters give serious presentations, people often laugh at us in ableist ways. Scroll up for some strategies on how to handle that attitude from an audience.

Solidarity with disabled presenters who are subjected to ableist laughter

July 6, 2017June 21, 2021 Real Social Skills

A challenge to disability professionals and disabled presenters at conferences and panels: Please find a way to respond to the routine contempt that presenters with disabilities are treated with.

I’ve gone to a fair number of disability-related conferences in the past few years. At nearly every conference, I saw an audience laugh at a presenter/panelist with a developmental disability. This happened particularly often to presenters with intellectual disabilities, but I also saw it happen to autistic presenters and presenters with speech disabilities.

This isn’t a matter of random jerk encounters; it’s a major cultural problem. Even disability professionals who pride themselves on inclusivity and respect tend to behave this way.

This isn’t nice laughter. It’s not a response to something funny. It’s a response to presenters talking about what they’re proud of, what they’re good at, or talking about wanting control over their own lives. People also laugh similarly when parents and siblings talking about their disabled relative wanting autonomy or objecting to being treated like a little child. This happens all the time, and it needs to stop.

If you’re moderating a panel and the audience laughs at a panelist, here’s one method for shutting this down:

Be proactive about taking the panelist seriously:

Don’t look at the audience while they’re laughing, and *especially* don’t laugh or smile yourself.
Wait for the audience to stop laughing.
Pause briefly before going on. This will make the laughter feel awkward.
Ask the panelist a question that makes it clear that you respect what they’re saying.
You can explicitly ask “Did you mean that seriously?”
You can also be a bit less direct, and say something like “That sounds important. Can you say more?”
You can also ask a follow-up question about the specific thing they were saying.

I think that we all need to be proactive about changing this culture. (Including disabled presenters who get laughed at; we need to insist on being taken seriously. More on that in another post).

Misogyny is not legitimate criticism.

June 22, 2017June 9, 2021 Real Social Skills

Women are people. Women face misogyny regardless of what they do.

Sometimes people do bad things. Some of the people who do bad things are women.

When women do bad things, that justifies criticism. It does not justify misogyny, or sexualized insults.

For instance: If a female politician votes against health care for poor people, it’s important to talk about how that will get people killed.

That doesn’t make it ok to call her ugly, mock her body, or make comments about how she needs to get laid. None of that has anything to do with health insurance. None of that is valid criticism. None of that serves any constructive purpose. It’s just misogyny.

Directing misogynistic insults at any woman is harmful to all women. It sends the message that there’s no problem with misogyny so long as the woman is a bad person who has it coming somehow. This implies that the only real disagreement about misogyny is about which women deserve it.

We need to object to misogyny in principle, regardless of who the target is. Misogyny is not criticism. It’s just destructive hatred.

Disability doesn’t come with extra time and energy

May 27, 2017June 9, 2021 Real Social Skills

I’ve heard a lot of advocates of inclusion say things like “kids with disabilities work twice as hard as everyone else” or “my employees with Down’s syndrome never come in late or take a day off.”

This sounds like praise, but it isn’t.

The time disabled people spend working twice as hard as everyone else has to come from somewhere.

There are reasons why kids aren’t in school every waking moment. There is a reason why vacation time exists and why it’s normal to be late occasionally.

People need rest. People need leisure time. People have lives and needs and can’t do everything.

Being disabled doesn’t erase the need for down time. Being disabled doesn’t erase the need for play, or for connections to other people.

Working twice as hard as everyone else all the time isn’t sustainable. Praising disabled people for doing unsustainable things is profoundly destructive.

People with disabilities should not have to give up on rest, recreation, and relationships in order to be valued. We have limited time and energy just like everyone else, and our limitations need to be respected.

It is not right to expect us to run ourselves into the ground pretending to be normal. We have the right to exist in the world as we really are.

Autistic people don’t all want boring jobs

May 1, 2017June 9, 2021 Real Social Skills

Lately, I’ve been seeing a lot of variations on a story that goes “Autistic people love detail, and it makes them naturally well suited for repetitive jobs that most people find intolerably boring.”

This is usually said with great fanfare, and described as a step away from stigma and towards celebration.

But — autistic people don’t all have a convenient love of tedious tasks. Some of us find them as boring as everyone else does.

This model of “autistic strengths” celebrates us doing jobs everyone else hates. It has no room for us to pursue jobs that others want. We’re supposed to stay in a special place for special people, doing the boring tasks the ideology says we love — and making no trouble for the normal people who do the interesting jobs.

This isn’t ok, and it isn’t acceptance. Some of us like things that others don’t, but none of us should be forced into a box. Autistic people have the full range of interests, talents, and skills that anyone else does. We shouldn’t be tracked into jobs based on stereotypes. We have the right to decide for ourselves what to pursue.

Some thoughts on asking questions at the seder

April 9, 2017June 21, 2021 Real Social Skills

Content note: This post is more Jewish-specific than my posts usually are. Feel free to reblog it if it speaks to you.

Seders are supposed to be about asking questions, but that doesn’t always happen in practice. (For any number of reasons.)

Here’s one way to look for questions to ask about the seder. You can look at any piece of it and ask:

What is this doing in the haggadah?
What does it have to do with the Exodus from Egypt?
What does it have to do with the world the rabbis were living in?
What does this have to do with the world we’re living in?

And if you’d like some examples, here are some of the questions I’ve been thinking about:

What’s the deal with dayenu?

There’s a whole long list of things that we seem to be saying “It would have been enough” about.
Which ones make sense to you? Which ones don’t? Why?
Why do you think we say all of these things?
Is there anything you think belongs on the list that isn’t there?

What’s the deal with the four sons/daughters/children?

Why are we even talking about this here? Why talk about this rather than details of the story of leaving Egypt?
What do you think of the categories? Do these seem like real types of people or types of responses to you?
What examples can you think of?

Regarding the “one who does not know how to ask”:

What are some reasons that some Jews aren’t able to ask their questions at the seder?
What could be done about that?
Which questions do you have that you aren’t able to ask? (Or aren’t yet able to ask).
What might make it possible to ask them?

What does freedom mean this year?

Some parts of the haggadah say that we used to be slaves, and that we are now free.
Other parts say that we are still slaves, and that we hope to be liberated.
What does this mean to you? Why do you think the haggadah says both?
Do you think that there are ways in which we are both free and unfree?
What liberation are we still hoping for?

Why do we open by making promises we can’t keep?

The beginning of the story part (maggid) opens with ha lakhma anya (this is the bread of affliction.
As part of this, we say “let all who are hungry come and eat” and “let all who are in need come and offer the Passover sacrifice”.
We know that people are hungry who we’re not really inviting to eat, and that we’re not going to offer the Passover sacrifice at this meal.
What’s the point of saying this?

(And actually, wearing my other hat, I’m involved in a weekly Twitter parsha discussion). This week (Thursday 7:30 EDT April) we’re going to be discussing seder-related questions instead of parsha questions.

Short version Passover Seders are supposed to be about questions. Scroll up for an approach to looking for questions, and some of the questions I’ve been asking.

A piece of advice for parents of kids whose disabilities are starting to become apparent.

April 5, 2017June 9, 2021 Real Social Skills

You’re probably going to have to deal with a lot of people who don’t respect your relationship to your child very much. You know a lot about your kid, and you’re probably going to have to deal with a lot of people who treat you like nothing you have to say matters.

You’re also probably going to have to deal with well-meaning people who say things like “you’re the expert on your kid!!!”. This sentiment can be affirming in some ways when people aren’t taking you seriously, but it can also be toxic.

Taken literally, “you’re the expert on your kid” isn’t true — and it doesn’t need to be. Even aside from disability, kids are complicated. No parent understands everything about their kid. Every parent faces confusing situations, and every parent makes mistakes. Parenting kids with disabilities tends to mean being confused more of the time. That’s ok. You don’t need to be a perfect expert on your kid. It’s both impossible and unnecessary.

There will be times when you have absolutely no idea. When your kid is struggling and you don’t know why, and strategies you’re trying aren’t working. When that happens, you’re still your kid’s parent, and the relationship still matters. You’re not going to be an expert on every aspect of your kid at all times, and that’s ok.

Sometimes when you don’t know what to do, others have useful ideas. It’s worth being aware that good strategies tend to get developed in silos. If you’re only looking in one context, it’s worth trying more. For instance, there are things medical/therapy professionals often know, things adult activists living with the same disability often know, things teaches often know, and so on. It can also be worth looking outside of your child’s disability group — resources intended for one disability are often helpful for another, and groups don’t always talk to each other.

(This goes double if your child is autistic. Nothing disabling about autism is completely unique to autism; all of it’s shared with some other disabilities. Resources associated with other conditions are often better (and less behaviorist.).

All that said — you will probably face situations in which none of that helps. Sometimes you’ll seek out all kinds of perspectives and still find that nothing you’re aware of helps enough. When that happens, you may attract people who give you a lot of bad advice loudly. When you’re worried, it can be hard not to believe people who yell at you and tell you that they are experts.

Don’t get psyched out by professionals who try to convince you to stop thinking for yourself. They’re good at sounding right in intimidating ways. They often do not actually know what they are talking about. And ultimately, you are your kid’s parent, and all parents are clueless sometimes, all parents make mistakes, and you and your child are allowed to be human.

Similarly, as your child grows up, they will grow apart from you in some ways. That’s how kids are, and that’s part of how maturity works. Teenagers do things that their parents don’t understand. All the more so, adults do things that their parents don’t understand. Even in childhood, no one can really be a complete expert on another human being. Disability doesn’t change that. It’s not going to be possible to be an expert on your kid, and that’s ok. They’re a person, and so are you.

Short version: “You are the expert on your kid” is too much pressure. There’s a grain of truth, but it doesn’t reflect reality — and it doesn’t need to. There are a lot of unsolved problems in disability support — and in any case, no human being can really be an expert on someone else.

If you’re feeling bad about your kid after an IEP meeting

April 4, 2017June 9, 2021 Real Social Skills

Content note: This is directed at parents, and it’s about mitigating damage that can be done by the stigmatizing language in the IEP process. It expresses sympathy towards parents who are feeling things that can be harmful to disabled kids (as well as a call for parents handle those feelings constructively). This post may be triggering to people with disabilities who have been harmed by these kinds of attitudes.

The IEP process can be really hard on kids, parents, and families. In order to get your kid the services they need, you’ve probably had to describe them using some awful language. It likely violated every one of your instincts about how parents ought to describe their kids. You may have had to do it anyway, in order to get your kid access to education.

It’s pretty normal to feel awful about either yourself or your child after describing them in such negative terms or allowing others to do so. It’s wrong, and it feels wrong, and you often can’t do anything about it — and it often comes along with pressure to believe that this is being caused by your child’s disability. If you’re finding that you feel that way, it’s important to do something about it. Kids are generally very aware of how adults in their lives feel about them. Feeling that way about your kid on an ongoing basis is really damaging to them and to your relationship with them. Don’t beat yourself up; do find ways to mitigate it.

It can help a lot to remind yourself that nothing about your child’s disability causes this kind of language. No child should ever be described this way, including yours. They’re not being described this way because of the things they can’t do — they’re being described this way because the system is ableist and often unwilling to respond to disability constructively. It’s not their fault, and it’s not your fault — it’s an awful fact about our culture’s attitudes towards disability.

You wouldn’t say that a baby is failing because they’re not talking — it’s just part of being a baby. If someone said that a typically-developing eight year old was failing because they can’t write 10 page papers, most people would be outraged. Your child’s development isn’t failure either, and they deserve appropriate education without stigma or panic. They are allowed to have a body and a brain, and they deserve to be respected as a human being. Language that treats them as a collection of deficits is cruel, and doesn’t reflect reality.

Your child’s differences aren’t a failure. Their development is what it is, and that’s ok. It’s ok to be different. It’s ok to have a disability. It’s ok to need appropriate education. Their need for appropriate education is not failure, it’s just that you sometimes have to cooperate with a system that wrongly describes it that way.

One way you can show yourself that it shouldn’t be this way is to write a better description of your kid after the fact. Rewrite what your child is learning, and what you’d like them to learn. Write about what the barriers are, and what kind of help they need. Write about their rights, and where you see that they might be violated. Write about them as the child who you know and love, not a collection of scary deficits. (It can also help to write down ten of your favorite things about your kid.) Their disability does not call for freaking out. It’s just part of who they are, and that’s ok.

Short version: IEPs describe kids using cruel stigmatizing language that doesn’t reflect reality. Having to cooperate with them anyway can do serious damage to parent-child relationships. Rewriting a new and better description of your child can help to mitigate this damage.