Tag: disability professionals

When disability professionals say “tell us your story” and mean “tell us we’re wonderful”

Real Social Skills

If a disability professional asks you to come and address their professional group, be very careful — especially if they ask you to “tell your story”. Sometimes disability professionals are prepared to learn from disabled people, but more often than not, it’s a setup for humiliating emotional exploitation.

Most disability professionals form their professional consensus on The Enlightened Approach to Disabled People without many or any disabled leaders in the room. Having already decided what they will do to us, disability professionals then bring in disabled people as validation fairies to help them feel the way they want to feel about it.

Even if the person approaching you seems nice, it’s worth being cautious — don’t trust a smile; look for evidence about whether or not they are prepared to take you seriously as an expert. Most disability professionals don’t want to learn from our expertise; they want us to help them feel good about themselves. What they usually want from us is an emotional performance that validates their self image and the approach they’ve decided to take to disabled people.

They want to feel inspired, without facing difficult truths. They want to feel moved, without changing. They want to say “I learn so much from you!” without reconsidering their worldview or professional practice,  and they want to say “You have such a unique perspective!” to every disabled speaker, while treating us as largely interchangeable. (Disability professionals who are actually prepared to learn from us acknowledge gaps in their expertise, and seek out disabled experts to teach them what they need to know.)

When disability professionals *mean* “come make us feel good about ourselves”, what they usually *say* is some version of “we have so much to learn from your unique perspective” or “my colleagues need to hear your story”. When disability professionals ask a disabled person to “tell your story”, they generally expect us to follow these unwritten rules:

  • Tell the audience horror stories about your childhood that allow the listeners to feel righteous because We Would Never Do Such Things.
  • Make sure that the stories are graphic, but not too graphic. Horrify the audience enough so that their pulses raise a bit and they feel brave for listening to you, but be careful not to horrify them so much that they have nightmares.
  • Make sure that you tell the story in a way that doesn’t make them feel ashamed or responsible for any of it.
  • Give them someone to identify with so they can feel like excellent people. Usually it’s either “my mom never gave up on me!” or “there was this one awesome teacher who showed me how to believe in myself!”
  • Don’t talk about the lingering harm done to you, or how it’s affecting you in the present. Don’t make them think about harm done to disabled kids who are facing lifelong consequences of that harm. Don’t talk about present-day injustice, discrimination, or violence.
  • Tell your story as a tragic misunderstanding. Don’t talk about discrimination or systematic injustice. 
  • Allow your audience to laugh at you. Tell self-deprecating jokes. Don’t insist on respect.
  • Don’t describe solidarity with other disabled people, and don’t attribute any of your success to other disabled people who you regard as equals. 
  • Don’t describe fighting with a professional and winning, unless you can attribute your victory to someone they can identify with. 
  •  Don’t be angry, and don’t describe other disabled people’s anger as legitimate. (Under some circumstances, it may be permissible to describe it as understandable, but only if you’re appropriately condescending and give the impression that the therapy provided by the professionals in the room would fix it.)
  • Don’t talk about disability in political terms. Say that “times have changed”, without giving any credit to disabled people who fought for those changes. 
  • Do not mention organized groups of disability activists, especially organized groups of disability activists who exist in the present and clash with disability professionals. 
  • At the end of the presentation, open the floor for Q&A. When audience members presume that it’s ok to ask you intrusive personal questions, smile and give them an answer that makes them feel good about themselves. 
  • When you’re in the audience of their presentations, do not expect this intimacy to be reciprocated, and do not expect them to show similar concern for your feelings. 
  • Understand that you’re here to validate them, and they’re not there to validate you. Pretend that what they’re doing is listening and learning.
  • Don’t break character, and don’t drop the mask. Don’t acknowledge the unwritten rules or the unwarranted emotional validation they want from you. Accept compliments about your “honesty” and “authentic first hand perspective” with a straight face.
  • Above all, do not talk about being harmed by disability professionals who there’s any chance your audience would identify with.

When disability professionals expect you to be their validation fairy, this is a form of ableism and emotional exploitation. They should not be treating your life as a story about their benevolence as disability professionals. They should not be treating you as existing for the purpose of making them feel good about themselves. They should be treating you with respect as a real human being — and if you are an expert, they should be treating you with the professional respect due to a colleague.

I am not the validation fairy, and neither are you.

Short version: Disability professionals who say “tell us your story” often mean “make us feel good about how we’re treating disabled people”. If you’re considering accepting a storytelling speaking engagement, it’s worth thinking about whether the people considering bringing you in are actually willing to listen to you.

Absolution seeking behaviors

Real Social Skills

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

You can’t fight stigma by making disability unspeakable

Real Social Skills

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.

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).

Open letter to disability professionals

Real Social Skills

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.

People with disabilities are not professional development objects

Real Social Skills

Some people, often disability professionals, interact with disabled folks in creepy ways.

Here’s one way this plays out:

  • Person with a disability: I am going to bake a fancy cake. I am going to the fancy cake store to get ingredients. I hope they have the sugared roses in.
  • Disability professional who happens to be in the store: Oh wow, a real live disabled person with the exciting disability widget I’ve been reading about in the Journal of Professional Development In Supporting Widget Use!
  • Disability professional: Hey, you have an Exciting Widget. What kind of widget is it? Is it model 8A series 27? Do you have widget syndrome? I’ve heard that the New Widget is particularly good for people with widget syndrome. Has that been your experience?
  • Person with a disability: …

Other things of this nature:

  • “It’s so nice to see that you’re choosing to use the Exciting Widget and be independent.“
  • “Have you ever considered getting a dog instead of using the Exciting Widget?”
  • “Do you find that the Exciting Widget allows you to use a wider range of toilets?“
  • “Are you allowed to use the Exciting Widget at work?”
  • “Did you find the rehab difficult? I know it’s been hard for some of my clients.”

In effect, the disability professional is thinking something like this:

  • Being really fascinated with disability
  • Assuming that all people with disabilities are just as fascinated as they are, and:
  • That they are endlessly interested in talking about disability and equipment and therapy
  • Or that they’re living classroom models
  • And then treating them as though being visibly disabled in public constitutes permission to ask invasive personal questions and initiate detailed conversation about disability

It’s not ok because:

  • Decisions about adaptive equipment and mobility are intensely personal and private
  • It’s not ok to ask random strangers intimate questions about their bodies
  • Being disabled in public just means that someone is living their life
  • Being visibly disabled in public doesn’t mean someone is endlessly fascinated with disability, or that they’re remotely interested in discussing disability and equipment and therapy with you.
  • The world is not your classroom. It’s the world, and the people in it have agendas of their own. It’s not ok to treat them as objects for your professional development
  • People with disabilities should be able to live their lives without being asked inappropriately intimate questions by strangers

Some concrete examples:

People with disabilities are just living their lives. A person with a disability doesn’t owe it to anyone, including professionals, to participate in their disability fandom.

For instance:

  • Wheelchair users are using wheelchairs to get around. Their wheelchairs are not an invitation for you to participate in the wheelchair fandom and discuss wheelchairs, disability, treatments, or your professional development with them.
  • Blind people are not an opportunity to participate in the cane fandom, the O&M fandom, or to discuss your opinions about the relative merits of canes and dogs
  • All of those things require consent, and being disabled in public does not constitute consent.

And particularly if you are a professional:

  • It’s important to keep in mind that being a disability professional is a choice, and having a disability isn’t
  • And for professionals, equipment conversations are a form of talking shop; for most people with disabilities they are intimate and personal.
  • People with disabilities are not necessarily interested in using their personal lives as fodder for your shop talk
  • If you see someone with a disability in a public place, all you know is that they have a disability. That doesn’t imply anything about their interests or their willingness to answer invasive personal questions.
  • And more generally: as a professional, you have a responsibility to be rigorously ethical in the way you interact with people with disabilities
  • If you’re being invasive and asking inappropriately intimate questions of random disabled strangers in public, you’re probably doing a lot of even more inappropriate things with clients
  • People with disabilities who depend on you for services might not be in a good position to assert boundaries; it is your responsibility to avoid putting them in that position and rigorously respect boundaries on your own initiative
  • You can’t simply rely on your professional culture to teach you appropriate boundaries; there are too many professionals who don’t have this skill.
  • You have to actively seek out boundaries education on your own initiative
  • One professional who is really good at this is Dave Hingsburger. He wrote a good introduction called Power Tools. It explains a lot of practical things about power, disability, and boundaries in practical concrete ways.

Short version: People with disabilities are not education objects. Don’t ask people with disabilities invasive personal questions about their bodies or adaptive equipment choices. If you’re a disability professional who does this, it’s important to stop doing that and to learn more about boundaries.