Two ways in which representation matters

There seems to be a major disconnect about what it means for a conference to have disability representation. I’ve seen a version of this happen a number of times:

  • A panel on diversity or social justice has no disability representation. 
  • No panelist talked about disability as a justice/diversity issue, or even alluded to disability experience.
  • A disabled person points out the problem to the organizers. 
  • The organizers say something to the effect of “Actually, one of the panelists has [some disability or other]”.

Organizers are sometimes genuinely confused about why this isn’t a solution, and I’m realizing that this is in part because “representation” means at least two different things:

Sometimes representation just means diversity of panelists, ie: 

  • There need to be panelists who are disabled (and in many context, there need to be panelists who are *openly* disabled). 
  • This is important in part because when there are no openly disabled people on a panel, this is often a sign of disability discrimination.
  • (Especially if there are no disabled people on *any* panels at a conference, or there are only disabled panelists on disability-focused panels.)
  • In some contexts, diversity of panelists is enough.

Sometimes representation means literally being a representative of a community or movement: 

  • Sometimes it’s not enough to have diverse panelists. Sometimes it’s necessary to have panelists who can represent other disabled people by speaking on behalf of an organized disability community or movement. 
  • In many contexts, there need to be panelists who can speak from a position of expertise about disability issues.
  • For instance, if the topic of the panel is intersectional activism or collaborating across movements, you need someone who can represent at least some part of the disability activist community.
  • Diversity of identity is not enough in this case, because having an identity is not the same as representing an organized advocacy community.
  • Being disabled does not in and of itself make someone a well-informed representative of the organized disability rights community.

Sometimes conferences forget that disability is a justice issue, and neglect to book anyone who can address disability as a justice issue, eg:

  • A conference holds a panel on intersectional advocacy called “Showing up for each other: Owning our privilege and leaving no one behind”.
  • The panel consists of an LGBTQ group, an anti-racist group, an economic justice group, and a feminist group.
  • None of the panelists are disability rights leaders.
  • None of the panelists talk about disability rights issues.
  • None of the panelists even talk about their own disability experiences.
  • On a panel about intersectionality and showing up for each other, disability issues are completely overlooked. 
  • Even if one of the panelists happens to have a disability or medical condition, this is still a problem.
  • (Especially if the organization holding the conference has a consistent pattern of overlooking disability issues.)
  • In this case, something has gone badly wrong and the conference needs to make an immediate plan for making sure it doesn’t happen again.

Sometimes conferences forget that diversity still matters when the topic isn’t disability or general intersectionality:

  • Not all disabled activists are disability rights activists.
  • Some disabled activists are focused primarily on other issues.
  • Eg: Some disabled activists are leading LGBTQ rights projects; some disabled activists are leading anti-racist organizations.
  • If disabled activists presenting about disability are the only disabled presenters at your conference, something has probably gone wrong.
  • If there are no disabled people presenting on any other topics, it’s important to think about what they is and what could be done to fix that.

Sometimes conferences forget that the disability community is diverse:

  • Many disability rights activists are also marginalized in other ways.
  • Many disability rights activists are also women, gay, trans, black, poor, Jewish, Muslim, immigrants, several of these, or otherwise multiply marginalized.
  • Eg: If all of the disability rights activists presenting at a conference are straight white Christian men, something has probably gone wrong.
  • If the range of disabled presenters at a conference doesn’t reflect the diversity of the disability community, it’s important to think about why that is and what could be done to fix that. 

Here’s an example of representation in both the diversity sense and the community representative sense:

  • There’s a writing conference or a comic conference or something.
  • Access needs are met in ways that make it possible for disabled people to go to the conference and present at the conference (without facing insurmountable or humiliating barriers).
  • General panels about diversity have disabled panelists knowledgable about disability issues.
  • Panels that are specifically about disability are lead by disabled panelists.
  • Many panels about topics *other than* disability have panelists with disabilities on them, in numbers that reflect the fact that disability is common.
  • Some disabled panelists on panels about topics unrelated to disability/diversity talk about disability and some don’t.
  • (Because not all disabled people are or want to be disability advocates.)

Short version: Representation on panels means at least two things. Sometimes it means a diverse range of panelists; sometimes it means panelists who literally represent a diverse range of communities. Scroll up for reasons this matters, and what problems can be caused when only one type of representation is considered.

For disabled presenters: Handling ableist laughter from your audience

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

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).

Thoughts on asking better panel questions

At panel discussions, there is usually a chance for members of the audience to ask questions. If you want to get good answers to your question, it helps to ask the question a certain way. These are not absolute rules, but these general principles often help:

Ask one question:

  • If the panelists are interesting, you will probably have a pile of questions you want to ask them
  • It can be tempting to try to ask all the questions together in one long paragraph
  • That never works, because the panelists don’t actually have time to answer all ten of your complicated questions
  • And if your question gets overly long and complicated, they quit paying attention and just talk about what they want to talk about
  • If you want them to answer a question, you have to pick one.

Make sure your question is actually a question:

  • The point of asking questions is to get the panelists to share their perspective on something you care about
  • The question you ask should be possible to answer, and you should be interested in what the panelists think of it
  • Otherwise it’s not really a question
  • Sometimes people who think they’re asking a question are actually presenting a long monologue about their views on something
  • That really annoys everyone.
  • The people in the audience came to hear the panelists, not you. If you monologue instead of asking a question, it will annoy them.
  • (There’s almost always at least one person who does this.)
  • (There are some exceptions to this: if you’re sufficiently popular in that group that people are likely to be just as interested in what you say, *and* the panelists hold you in high regard and won’t mind, sometimes it’s ok. That’s rare.)

Questions to panelists should be specific, and easy for the panelists to understand. They should also be at least somewhat open-ended, so that the panelists will be able to give substantive and nuances answers. A few possible scripts for forming good questions (there are many others):

Asking how something works, or how something will happen, eg:

  • “How will the new version of your app support VoiceOver?“
  • “How do you decide what to put in the parameters for casting calls?”
  • “How do you respond when the alarm goes off in the spaceship?“

This can also be a short statement, then a question, eg:

  • “A lot of comedians tell offensive jokes. When you’re working on a routine, how do you figure when a joke you’re considering is crossing a line?”

Asking them to expand on something interesting they referenced by starting with “Can you say more about…”, eg:

  • “Can you say more about the time you quit a job at the Very Highly Regarded Charity for ethical reasons?“
  • “Can you say more about your methods for attracting butterflies without also attracting wasps?”

“What do you think about..?” or “Here’s a statement. What do you think about that?“

  • This can be good, but it can also be hard to make it specific.
  • Example of an overly vague question: “What do you think about pie?”
  • A better question: “What do you think of replacing cakes with pie on ceremonial occasions?“
  • Another example of a question that would be overly vague in most contexts: “What do you think about progress?”
  • A question that’s more likely to be answerable: “What do you think about the role of People in Our Field in making the world better?”
  • another example: “Some people say that if we wait long enough, things will get better on their own. What do you think about that?“
  • “What do you think about Other Person’s Theory? Does that seem true in your work?”

“Do you think that…”

  • This can be a good way to ask stuff
  • The problem is that it’s prone to cause a question to be overly closed
  • Eg: “Do you think that you will enjoy your next job?” is very unlikely to get a good answer
  • This might get a good answer: “Do you think that other women are still facing obstacles in your field?“
  • Offering alternatives can sometimes make the question seem more open, eg:
  • “Do you think that standardized testing is a good approach to improving special education outcomes, or do you favor a different approach?”

Asking about a rumor:

  • Make it clear which rumor you’re talking about, then ask about it (Asking “So, are the rumors true?” will not generally get an interesting answer).
  • “Is there any truth to that?” will often get a better answer than “Is that true?”
  • Example: “I heard that you’re working on a book of poetry about cats from a laser pointer’s perspective. Is there any truth to that?“

Questions that start simple and also ask for an explanation. There’s sometimes another way to phrase these too:

  • Adding “why or why not?”
  • eg: “Did you enjoy being a voice actor on the Simpsons? Why or why not?“
  • you could also ask that question this way: “What were some things you liked and disliked about being a voice actor on The Simpsons?”
  • another example: “Do you think that there is life on other planets? Why or why not?“

There are also questions that are challenges. These are harder to pull off. They still should be real questions, that it is actually possible to answer in a substantive way.

  • For instance “Isn’t it true that you’re an ableist and only care about yourself?” isn’t a good question because there’s no good way to answer it.
  • Asking that way makes you look like a jerk, even if you’re completely right in your assessment
  • It’s much more effective to challenge them on something specific, and to ask a question that it is possible to answer
  • (This can sometimes force them to consider the issue, or to reveal publicly that they’re getting it wrong.)
  • Example of a better question: “Why doesn’t the board of your Disability Organization About Disability have any openly disabled members?”
  • Or, you can push harder and say something like: “There are no openly disabled members on your board. What are you doing to address this problem?“
  • How far it’s useful to push depends a lot on context.
  • (The rule of only asking one clear question at a time is particularly important with challenges. If you ask a complicated or ambiguous challenge question, it makes it easy for them to evade it.)

If possible, keep your question short:

  • Most people don’t like to pay attention to long complicated questions
  • If your question is short and easy to understand quickly, you’re likely to get a better answer
  • Short questions are easier to understand
  • They’re also harder to evade
  • If your question is 1-3 sentences long, you will probably get a better answer than if it is substantially longer.

Think about your question before you start talking:

  • You will probably have to wait your turn to ask
  • While you’re waiting to be called on, it’s worth planning what you want to say and how you want to say it
  • If you wait and don’t figure out what you’re going to say until you start talking, it will probably be more verbose and less clear
  • If you can, it’s worth planning
  • (For some people, writing the question down first helps)

None of these things are absolute rules, but all of them are potentially helpful. If you can’t communicate this way, you still have the right to ask questions. These are suggestions, not rules.

Short version: If you’re at a panel discussion and want the panelists to give interesting answers to your question, there are things that make that more likely. Scroll up for some general principles and some scripts.

Electricity is an access issue (short version)

A lot of people with disabilities need reliable access to electricity. If you don’t make electricity continuously available at your event, your event is not accessible.

Some people need electricity in order to breathe. Some people need electricity to be able to move across a room. Some people need electricity for life sustaining medical treatments. Some people need electricity to communicate.

All of these people, and anyone else with an access need for electricity, should be welcome at your event. They can be, if you make proper plans and make sure that electricity will be reliably available.

(For further details, see this post.)