Tag: ableism

Struggling more with disability in times of political emergency

Real Social Skills

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.

Calling hard things easy does not make them easy

Real Social Skills

I see a lot of people (especially disabled people) hate themselves for struggling with things that they think of as easy, often along these lines:

  • Person: I need to do this thing.
  • Person: It’s not hard. This is so easy. Why don’t I just do it?
  • Person: I know I need to do the thing. It’s been weeks. What’s wrong with me? This isn’t hard. I need to just do it already.

If you’re having trouble doing something, the thing you’re struggling to do is not actually easy. There is no objective difficulty scale. Tasks aren’t inherently easy or difficult — it depends on the person and the situation. Different people find different things easy and hard. Sometimes you will struggle with things that other people find easy. That doesn’t mean you’re failing to do an easy thing. It means that for you, the task is hard.

Sometimes things that are hard at first become easier with practice, or become easier when you learn new skills. Sometimes things never get any easier. Sometimes solutions that work for people who can do the thing without much trouble will work for you too; sometimes you might need support that other people don’t need.

Sometimes you might need to find an alternative to doing the thing. Sometimes the only solution is to have someone else help you do the thing or do the thing for you. It doesn’t matter if you think it ’should’ be hard or easy, if you’re having trouble doing something, that means the thing you’re trying to do is hard. (And sometimes, it might mean that the thing is impossible.)

Calling something easy does not make it easy, and you can’t make hard things easy by hating yourself. Hard things become much more possible when you accept that they are hard, stop trying to overcome the difficulty through sheer force of will, and seek out solutions that will work for you.

Short version: If you’re saying to yourself “Why haven’t I done this easy thing?!”, the thing is probably not actually easy. 

Two ways in which representation matters

Real Social Skills

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”

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.

In defense of distracting fidget toys

Real Social Skills

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.

“I never do x” vs “When I do x, it doesn’t count, because it’s justified”.

Real Social Skills

It’s important to have morally neutral language to describe actions. This is especially important for actions that are always, usually, or sometimes morally wrong.

For instance:

  • In English, ‘killing’ and ‘murder’ mean different things.
  • ‘Murder’ always means killing that is either illegal or morally wrong.
  • ‘Killing’ can describe any act that causes someone to die.
  • This distinction makes it possible to talk about when killing is and isn’t justified.
  • Even for people who think that killing is always murder, this is important.
  • Without morally neutral language, it’s impossible to express a clear opinion on whether or not killing is ever acceptable.

For instance (names randomly generated using https://www.fakenamegenerator.com/gen-random-us-us.php):

  • Heather: *shoots Sonja*.
  • Sonja: *dies as a result of being shot by Heather*.
  • In this situation, Heather definitely killed Sonja. Whether or not she murdered Sonja is something people can argue about.
  • Eg: If Sonja was trying to kill Heather and Heather shot her in self-defense, almost everyone would argue that this isn’t murder.
  • Eg: If Heather was trying to rob Sonja’s store and shot her to prevent her from calling for help, almost everyone would consider that murder.
  • Eg: If Heather felt threatened by Sonja in a public space and shot her rather than trying to run away, most people would consider that murder, but some people would vehemently disagree.
  • Because ‘murder’ and ‘killing’ are different words, everyone would be able to express their opinion in a clear way.

When it’s impossible to describe actions without condemning them, it can be impossible to describe what people are actually doing. This makes it hard to have an honest conversation, and even harder to hold people accountable.

Here’s a disability services example (randomly generated names):

  • Charles (a staff person): I don’t believe in coercion. I never control my clients or tell them what to do. They’re totally in control of their own lives.
  • Patricia  (a disabled adult client): I want to eat some cookies at 3am.
  • Staff person: You can’t eat cookies at 3am. You agreed to take care of yourself by making healthy choices, and it’s important to keep your agreements.
  • Patricia: You’re telling me what to do instead of letting me decide.
  • Staff person: No I’m not. I’m telling you that you can’t eat cookies at 3am because staying up past your bedtime and eating junk food aren’t healthy choices. I would never tell you what to do.
  • Patricia doesn’t get access to cookies, and is put on a behavior plan if she leaves her room after 10pm.

In this example, Charles is blatantly and unambiguously controlling Patricia and telling her what to do. When Patrica says ‘telling me what to do’, she means it literally. When Charles says, ‘telling people what to do’ he really means ‘telling people what to do (without a good reason)’. He doesn’t realize that coercion is still coercion even if he thinks it’s justified coercion. Without a direct literal way to refer to the act of controlling people, it becomes nearly impossible to discuss when coercion is and isn’t justified.

This happens a lot, in any number of contexts, often following this kind of pattern:

  • Person: I would never do The (Unacceptable) Thing!
  • Person: *does The (Unacceptable) Thing*.
  • Someone else: You literally just did The (Unacceptable) Thing.
  • Person: No, I didn’t do The (Unacceptable) Thing. I had a good reason, so it wasn’t The (Unacceptable) Thing. I would never do The (Unacceptable) Thing.

Sometimes people who talk this way are lying — but not always. Sometimes it’s that they don’t understand that reasons don’t erase actions. Sometimes they think actions only count as The (Unacceptable) Thing when they consider the actions to be unjustified/unacceptable. If you point out that they are, in fact, literally doing The Thing, they think that means you’re accusing them of being bad — and that you couldn’t be right, because they have a good reason.

This language problem is breaking a lot of conversations that need to happen, particularly around privilege and misuse of power.

Short version: It needs to be possible to describe what people are doing in morally neutral terms. This is especially important for actions that are always, usually, or sometimes morally wrong. Scroll up for more about why and a concrete example.

Manipulative fake apologies

Real Social Skills

Some apologies amount to someone asking for permission to keep doing something bad.

  • These apologies generally shouldn’t be accepted.
  • (But it can be really hard not to, because who want permission to do bad things tend to lash out when they don’t get it.)
  • (If you have to accept a bad apology to protect yourself, it’s not your fault.)

Eg:

  • Moe: “I’m sorry, I know this is my privileged male opinion talking but…”
  • Or, Moe: “I’m sorry, I know I’m kind of a creeper…” or “I’m sorry, I know I’m standing too close but…”
  • At this point, Sarah may feel pressured to say “It’s ok.”
  • If Sarah says, “Actually, it’s not ok. Please back off” or “Yes, you’re mansplaining, please knock it off”, Moe is likely to get angry.
  • The thing is, it’s not ok, and Moe has no intention of stopping.
  • Moe is just apologizing in order to feel ok about doing something he knows is wrong.

Another example:

  • Sam is a wheelchair user. He’s trying to get through a door.
  • Mary sees him and decides that he needs help.
  • Mary rushes to open the door. As she does so, she says “Oh, sorry, I know I’m supposed to ask first”, with an expectant pause.
  • At this point, Sam may feel pressured to say “It’s ok”, even if the ‘help’ is unwanted and unhelpful.
  • If Sam says, “Yes, you should have asked first. You’re in my way. Please move”, Mary is likely to get angry and say “I was just trying to help!”.
  • In this situation, Mary wasn’t really apologizing. She was asking Sam to give her permission to do something she knows is wrong.

More generally:

  • Fake Apologizer: *does something they know the other person will object to*.
  • Fake Apologizer: “Oh, I’m sorry. I know I’m doing The Bad Thing…” or “I guess you’re going to be mad if I…”
  • Fake Apologizer: *expectant pause*
  • The Target is then supposed to feel pressured to say something like “That’s ok”, or “I know you mean well”, or “You’re a good person, so it’s ok for you to do The Bad Thing.”

If the Target doesn’t respond by giving the Fake Apologizer permission/validation, the Fake Apologizer will often lash out. This sometimes escalates in stages, along the lines of:

  • Fake Apologizer: I *said* I was sorry!
  • Fake Apologizer: *expectant pause*
  • The Target is then supposed to feel pressure to be grateful to the Fake Apologizer for apologizing, and then as a reward, give them permission to do The Bad Thing. (Or apologize for not letting them do The Bad Thing.)
  • If the Target doesn’t respond in the way the Fake Apologizer wants, they will often escalate to intense personal insults, or even overt threats, eg:
  • Fake Apologizer: I guess you’re just too bitter and broken inside to accept my good intentions. I hope you get the help you need. And/or:
  • Fake Apologizer: Ok, fine. I’ll never try to do anything for you ever again. And/or
  • Fake Apologizer: *storms off, and slams the door in a way that causes the person who refused their intrusive help to fall over*.

Short version: Sometimes what looks like an apology is really a manipulative demand for validation and permission to do something bad.

On solving the right problem

Real Social Skills

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

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

Autistic people can have friends

Real Social Skills

One reason I started writing this blog is that I got tired of seeing social skills programs teach autistic people that they have to become normal in order to have friends.

It’s not true. There are a lot of autistic people who have friends without becoming remotely normal. Oddness and friendship are entirely compatible.

You can be autistic, seem autistic, and have friends who like you and enjoy your company.

Some people won’t like you, and that’s ok. Not everyone has to like everyone.

Some people will dislike you because they are bigoted against autistic people. That’s not ok, but it doesn’t have to ruin your life. Ableists don’t speak for everyone. Those people aren’t your friends. Other people can be.

You’ll probably always face ableism. Trying to be normal probably won’t make that go away; accepting yourself probably won’t make that go away either. You don’t need to change the whole world in order to have friends.

You can have friends as the person you are, in the world as it is now.