Struggling more with disability in times of political emergency

Everything gets harder under extreme stress. The situation of constant political crisis we’re living through is extremely stressful situation, and a lot of people are struggling.

This is not a normal situation. Donald Trump has been doing horrific things since the moment he assumed office, some of which we saw coming, and some of which have been awful surprises. Both the work that has to be done and the terror we’re facing on a day-to-day basis are draining. We have faced one crisis after another, and it has been completely exhausting.

The baseline level of stress and work we’re facing right now makes everything harder in and of itself — and new emergencies can intensify that. (And sometimes you might think that you’ve gotten used to it and then find that a particular crisis hits you particularly hard.)

If you have a disability, this may be affecting you differently than it’s affecting nondisabled people. Most people are having trouble right now; most disabled people are having additional disability-related trouble. That’s true in both the background sense and in the sense that the impact emergencies have on you may be different for disability-related reasons.

If you have a mobility disability, moving might be harder right now. If you have a speech disability, speaking might be harder or impossible right now. If you have sensory issues, some sensory input you are normally able to deal with might be intolerably painful at the moment. If you have an eating disorder, it might be harder to control it right now. If you have seizures or migraines or other neurological problems, your threshold might be lowered. If you have trauma-related triggers, they might be harder to tolerate, or you might be more hypervigilant than usual. If you are hard of hearing, it might be much harder to understand spoken conversations right now. And so on.

Things you’re used to being able to do might be harder or impossible right now. Coping mechanisms you’re used to relying on might not be working. This is true for everyone, disabled or not. But with disability, we’re also having functioning problems that most people around us aren’t having. That can in itself be difficult to cope with.

For many of us, self acceptance as disabled people is a struggle. Under extreme stress, acceptance can be even harder. Acceptance is a skill just like everything else — and under extreme stress, many of us are dramatically more impaired. Acceptance gets harder, at the same time that there is suddenly more to accept. But you’re still worthy of acceptance. You’re not broken. It’s just hard.

Being disabled isn’t a failure. Being more impaired in a time of extreme stress isn’t a character flaw. You’re not alone in struggling. Nondisabled people are also more impaired right now; and they also can’t make it go away through sheer force of will. The particular things you can and can’t do may be different — because you have a disability, and disability matters.

Short version: The times we’re living in involve a lot of fear and extremely stressful political crises. This kind of stress makes everything harder. If you have a disability, some of your coping skills might not be working very well right now. Acceptance may also feel a lot harder. It’s worth remembering that it’s normal to struggle in situations like this — and it’s not your fault that disability matters now. Your body is not a character flaw.

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.

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

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.

In defense of distracting fidget toys

One problem with the way stim/fidget toys are discussed is that there’s often a false dichotomy drawn between good fidgets that help people to focus, and bad fidgets that distract people. Focus is not the only legitimate reason to use a stim toy.

Further, being focused on your surroundings isn’t always a good thing. Sometimes, the main reason a stim toy is useful is *because* it is distracting. For instance, some people use stim toys to distract themselves from trauma triggers. When an environment is triggering, it can be really helpful to have a way of temporarily ignoring it.

Some people use stim toys to distract themselves from pain or sensory overload. Distracting stim toys can be a way to take a break without having to leave the room. Fidget spinners in particular often work really well for this.

There are any number of ways to use stim toys. Some uses, like holding a rock in order to remind yourself where your hand is, have little or nothing to do with focus one way or the other. They serve a different purpose.

We shouldn’t let “they help with focus” be the only use of stim toys we acknowledge as legitimate. The other ways they are used also matter. And sometimes, getting distracted is the whole point.

Disability vs special needs

I’m sometimes asked “Why do you say “disability” instead of “special needs”?

Here’s the most basic reason:

  • When people say “special needs”, the next word is usually “kids”.
  • When people say “disability”, the next word is often “rights”.

I’m an adult, and I want equal rights. For that reason, I’m going to keep using the language that has room for adulthood and power.

Autism stereotypes and Not Autism Syndrome

People who have rare developmental disabilities are often misdiagnosed with autism.  This happens in part because a lot of disabilities look similar in early childhood. When kids with undetected rare genetic conditions start ‘missing milestones’, they are often assumed to be autistic.

When people are assumed to be autistic, autism stereotypes get applied to them. They’re often assumed to be uninterested in people and communication, and they’re often put into ABA programs prescribed for autistic people. They face the same kind of degrading and damaging misunderstanding that autistic people do.

When advocacy organizations address the issue of misdiagnosis, they tend to say some form of “It’s important to distinguish between autism and Not Autism Syndrome, because demeaning autism stereotypes only accurately describe autistic people.”

Here’s a Rett Syndrome example:

“The child with RTT almost always prefers people to objects, but the opposite is seen in autism. Unlike those with autism, the RTT child often enjoys affection.”

And a Williams Syndrome example:

“Unlike other disorders that can make it difficult to interact meaningfully with your child, children with Williams Syndrome are sociable, friendly and endearing. Most children with this condition have very outgoing and engaging personalities and tend to take an extreme interest in other people.”

Statements like these suggest that the problem with autism stereotypes is that they’re applied to the wrong people. The thing is, demeaning autism stereotypes aren’t true of anyone. We all have feelings and thoughts and the capacity to care about things and relate to other people. Accurate diagnosis matters, but not as a way of sorting out who is and isn’t fully human. We’re all fully human, and no one should be treated the way autistic people are treated. We shouldn’t pass around stereotypes, we should reject them.

On solving the right problem

Not every problem disabled people have is a failure to understand social situations.

Sometimes the problem is that our bodies are considered socially unacceptable.

No amount of social skills training will change our bodies.

No amount of social understanding will make typical movement and typical speech physically possible.

No matter what we learn, bodies and brains matter. We’re still disabled when we understand things.

It’s ok to be disabled. It’s not ok to be bigoted against disabled people.

If we want to get anywhere, we need to make sure that we’re solving the right problems.

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

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.