Month: July 2017

Activism must not be derailed by behaviorism

Real Social Skills

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”

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

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

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).