Tag: actuallydd

Telling your story without being a self-narrating zoo exhibit

Real Social Skills
When you are an unusual person, especially if you are disabled, people will often tell you that they “want to hear your story”.
Often, it’s not really your story that they want to hear. Often they have a story in mind that they want, and they want it to come out of your mouth in order to validate their theories about people like you.
Often, what they really want is for you to be a self-narrating zoo exhibit, and satisfy their curiosity without inserting your opinions or having boundaries.
Maybe they want to hear from institution residents who don’t want to leave, so they can decide that institutions really are the best place for people with disabilities. Maybe they want to hear a story that allows them to feel pity for you and bask in their lack of disability. Or any number of other things.
These are ways people use their versions of our stories to take away our power; we can use our real stories to get our power back.
Telling your story doesn’t have to mean telling creepy people what they want to hear. It can mean telling the truth, even when others want to lie.
Telling your story can mean bearing witness. It can mean saying “No, it doesn’t work that way. I was there. I saw.” It can mean saying “I’ve seen people do these things that you say we can never do.” Or “I’ve been there. It was wrong. And it’s also wrong when people do it to you.”
It can mean saying: “I remember watching someone die because others decided to withhold medical treatment, food, and water. I wish I’d been able to save him.”
Or: “Don’t think that my life is pitiable or inspiring. I do meaningful things. We all do. And do you know how amazing it is when the light hits a rock just the right way?”
We don’t have to tell the stories they want us to tell. We can tell the truth. And there is power in the truth, and there is power in the truth backed up by stories about things you have witnessed or been part of personally.
It takes practice to learn to tell the truth in the face of pressure to be an inspiring self-narrating zoo exhibit. It can be terrifying. It can also be very, very hard to resist prompts to say the things other people clearly want you to say.
It takes practice, and in practicing you will probably not entirely succeed right away. Even with practice, you might still inadvertently tell the story others want you to tell rather than the story you believe some of the time. That’s ok. None of us are perfect, and it gets easier over time.
Short version: Sometimes when people say “tell us your story”, what they really mean is “tell us what we want to hear.” But telling your real story can be a powerful way to tell the truth.

“Don’t let people get to you”

Real Social Skills

I don’t know about you, but I’ve experienced this a lot:

  • I’ll talk about someone being mean or bigoted towards me.
  • And someone will say something like “Don’t let them get to you”, or
  • “Don’t ever let people get under your skin like that, they’re not worth it”

And in my experience, that always makes me feel worse. This is what I eventually figured out about it:

Things hurt.

It’s not your fault that it hurts when people are awful to you.

It’s not your fault you care what people think of you sometimes. (Everyone does.)

Having connections to others matters. And when people we’re connected to are mean, it hurts.

Self esteem talk can end up being yet another stick to beat you with, and that’s not right either.

Being hurt by mean people doesn’t mean you’re failing. It’s not possible to be completely invulnerable at all times. When someone’s shooting arrows at you, it’s not your fault for failing to make armor fast enough to stop them.

You’re ok. They’re mean.

“You’re not willing to accept criticism!”

Real Social Skills

Accepting criticism is important. Everyone’s wrong about something, and it’s important to be open to the possibility that you’re wrong about things. If you’re never persuaded by something someone says that you need to change your actions in some way, something is going seriously wrong.

But sometimes, when people say that you’re not open to criticism, what they really mean is that they’re angry because you don’t agree with them. Or that you’re refusing to change in a way that you want them to change. And sometimes, you will be entirely correct to disagree with them and to refuse to change.

For example:

  • “You’re a terrible writer and should not ever write anything ever again” is not criticism you should listen to
  • “If you’d just try a gluten free organic diet, you’d be cured” is not worthwhile criticism
  • “No one is ableist, you’re just imagining it because you want to feel special” is not worthwhile criticism

And there’s any number of other examples, many of which are far more complex and subjective. Everyone gets criticized in ways that it’s completely ok to reject.

And sometimes, it’s ok not to want criticism, even if there’s nothing inherently wrong with the criticism, eg:

  • It’s ok to make art without wanting to go through an art school style critique
  • It’s ok to write a story, post it somewhere, and decide not to read the comments about it
  • It’s ok not to want to discuss the problematic aspects of a show you like
  • It’s ok to not want your father’s input on who you should date

It’s possible to be insufficiently open to criticism, but that doesn’t mean everyone who accuses you of that is right. No one is, or should be, open to all forms of criticism from all people.

Sometimes people who criticize you are wrong. Sometimes they’re so wrong that they’re not worth listening to. Particularly when they’re saying the same thing over and over that you’ve long since considered and rejected.

It’s important to be open to criticism some of the time from some people. It’s also important to be selective about who and what you listen to, and when. You do not owe everyone who thinks that you are wrong your unconditional attention.

People might not understand your body language

Real Social Skills

Body language that comes naturally to some autistic people can be completely invisible to most neurotypical people.

For example, many autistic people respond to questions by nodding their head very slightly. It can feel like a bigger movement than it actually is, and sometimes people don’t notice it. If you’re nodding and people are ignoring you, it might just be that they don’t understand your body language.

Similarly, neurotypical people don’t usually understand the range of things that flapping and various forms of stimming can mean. They tend to read it as distress or as annoying behavior. They don’t usually understand it as body language. Since they lack the skill to understand body language correctly, it can be worth telling them things explicitly.

For instance, if someone doesn’t understand the kind of flapping that means hello, it might be worth saying hello with your voice when you want to greet them.

Sometimes neurotypical people intentionally ignore autistic body language, but sometimes they just don’t understand it.

The basic problem with social skills education

Real Social Skills

Human interaction is really, really complicated.

No one understands it all the way.

Almost every rule has major exceptions. Anything stated in a clear way is going to be oversimplified in some way.

There aren’t rules so much as cultures and traditions that everyone finds their own way to work with.

The most anyone can really say most of the time is “this is sort of how it works a lot of the time” or, “this is probably going to be the case for almost everyone, if not absolutely everyone”. It’s hard to be honest about that, especially when you’re talking about an extremely important area of interaction like physical boundaries.

In addition, people will tell you all kinds of things they wish were true. One example is how people will teach kids “tell an adult” even in situations in which adults are unlikely to care about bullying. Or “tell them it hurts your feelings” because they want that to work.

Writing this blog, I understand more and more why people do things like that. It’s hard not to. But, it’s important. Everything is more complicated than I’m describing; even when I’m mostly right. (And sometimes I’m not.)

I’m saying things that I think are true, as well as I can describe them. But, don’t just believe me. And, particularly, if you think it’s more complicated than I think it is, don’t assume that I’m right and you’re wrong.

Short version: Social skills are skills, and they’re complicated and to a large extent different for everyone. All descriptions, and especially all rules, are approximations are best.

“Well, he throws chairs at people!”

Real Social Skills
Content warning: talks about abuse of people with disabilities in schools and other programs, and ways people rationalize it.
 
A reader asked:
 
Thing about “last resort”- people will often make brutal things to do look connected to things they are not connected to. “You pinned him to the floor?” “Well, he throws chairs at people!” failing to mention that the pinning to the floor was actually because he threw a pencil. Even if it is factually true that the kid sometimes throws chairs at people.
 
realsocialskills said: 
 
Yes, absolutely.
 
Another thing that can happen is that someone will be described as “he throws chairs at people!” even if he did that one time five years ago.
 
Or if another teacher *told* them that he threw chairs at people, and they don’t ask for details. And maybe what actually happened is that he picked up a chair one time, and they decided that meant he was going to throw it. Or he habitually throws chairs, but never actually at people.

Setting the stage for disclosure of awkward or stigmatized things

Real Social Skills
A reader asked:
I’m on disability for mental illness and I recently moved to a new place. (I moved because the area I lived was rather toxic for me and I have a best friend here who is great support.) This means I’m meeting a lot of new people, and a lot of them open conversations by asking about work or why I moved here. I can only get by with “non-answers” for so long, and sometimes there are people who I would like to tell more to but not yet. I don’t know how to handle these questions. Suggestions/ideas?
realsocialskills said:
I don’t know much about the specific situation you’re in, but I do know some things about setting the stage for disclosure of awkward or stigmatized things:
First of all, it’s easier to disclose later if you don’t lie now. (There are reasons that lying might still be a good idea sometimes, but it has the downside of making later disclosure more difficult.) If you’ve already told a lie, then if you want to tell the truth you also have to effectively disclose that you lied about it, which can be awkward. (This isn’t necessarily always a huge deal. Some people will absolutely understand why you lied. But it does make things a bit harder).
Second, there are intermediate areas between telling the whole truth and giving a complete non-answer. You might be better off erring on the side of giving partial answers. Partial answers send the message that, yeah, there’s probably a story there, and now isn’t the time, but maybe you’ll get there eventually.
Partial answers can be things like:
  • “I was dealing with some medical issues and moved to be closer to supportive friends.” (I don’t know if that line works well for mental health – I feel like it should, but I don’t actually *know*, and I hope that people who’ve dealt with disclosing that degree of psych disability will weigh in)
  • “Things were really hard where I was living before.”
  • “I’m out of work right now.”/“I’m not able to work right now.”
  • “I’m between things.”
  • “It’s a long story.”

Partial answers work best when you combine them with an immediate subject change. The most effective way to change the subject is by asking them an open-ended question about something they are likely to want to talk about:

  • Them: Why did you move here?
  • You: Things were really hard where I was before and I wanted a change.
  • You: Do you know any good bookstores here? I’m always excited to learn where the new ones are in a new place.

Some kinds of questions that work well for changing the subject:

Asking them about themself:

  • Most people like to talk about themselves
  • If you get people to talk about themselves and listen to them, they will usually enjoy it and not mind that you haven’t told them much about yourself yet
  • It also can be a way for you to find out more about them and get a better sense of what it might be safe or comfortable to tell them
  • This works best if you ask them something specific but open-ended, eg questions like “How long have you lived here?” “What do you do?” work better than “Can you tell me about yourself?”
  • If they ask you a question, it’s often particularly effective to ask them the same question after you give a partial answer. People generally ask questions in getting-to-know-you contexts that they are eager to answer themselves.

Asking them about the place you’ve just moved to:

  • Most people like to feel competent and like they have expert knowledge
  • So they generally like to explain things they know well to people who are eager to find out about them
  • Asking about the area and listening to their answers is likely to make them feel happy and competent
  • Which can lead to them feeling positive about the conversation and happy that they met you
  • And, again, it’s a way to find out more about them and how they think

Pay attention to what people tell you:

  • If you notice other people who seem nice and also give non-or-partial answers to common smalltalk questions, they might be good people to get to know a bit better
  • (Not that it’s guaranteed; sometimes people are evasive because they’re hiding something that is actually bad. And even if they’re hiding something that isn’t bad, that doesn’t necessarily mean you and they will be good friends. But it *is* a sign that they might get it.)
  • If people say awful things about psychiatric disability, exercise caution about trusting them. It’s likely that they mean it, even if they are otherwise nice.
  • Listen for people who share your interests, even a little, and talk to them. Connecting around interests bridges a lot of gaps.

Ask your friend for help:

  • If your best friend has been in the area for a while, they might have a sense of who they trust to treat you well if you disclose things to them
  • Especially if they can introduce you to nice people
  • It’s a lot less stressful to deal with this situation if you can identify some people who are likely to be nice to you once you’re ready to tell them things

All of that said: you may actually be better off just being open about things in a matter-of-fact way. That has a lot of downsides, but it also has a considerable upside:

  • If you are open about something stigmatized, then you find out fairly quickly who is going to be a jerk about it and who isn’t
  • This means that you get a lot more people being directly awful to you, but it can be a more bearable kind of awful
  • Because if people you don’t particularly care about say horrible things to you, it can only penetrate so far.
  • It hurts a lot more if it’s someone you’ve really been trying to build a friendship with for a long time.
  • It is in many ways far less stressful knowing how people are going to react than worrying about how people are going to react
  • And it also makes it *far* easier to identify people who get it and won’t be jerks
  • In particular, if you are open about things, then people who *aren’t* open about things will be able to identify you as a trustworthy person, which means you’ll be able to find each other.
  • Also, people often take cues from how you talk about a stigmatized aspect of yourself
  • If you can talk about something stigmatized in a matter-of-fact way (possibly combined with an immediate subject change), people tend to react better than if you talk about in in a more cringing way
  • This approach has a major downside too, but it’s worth considering

Short version: There are a lot of approaches to disclosing stigmatized things about yourself. You might be better off being really open about it. You might be better off disclosing more cautiously. It helps to give partial answers to questions people ask, and to change the subject. It also helps to ask people questions that they’ll want to answer, and to listen carefully to what they say.

You don’t have to like being disabled

Real Social Skills

This is what I think disability acceptance means:

  • Facing what your abilities are and aren’t
  • Accepting yourself as already having value
  • Living your life now and doing things you care about.
  • Not putting your life on hold waiting for a cure

But, some kinds of acceptance talk end up putting destructive kinds of pressure on people. And I think:

  • It’s ok to like or dislike being disabled. It’s ok to like some aspects of your condition but not others
  • It’s ok to want treatment and to be frustrated that it isn’t available
  • It’s ok to pursue treatment that *is* available
  • It’s ok to work hard to gain or keep certain physical or cognitive abilities, and to be happy or proud that you have them
  • It’s ok to decide that some abilities aren’t worth keeping, and to be happy or proud about moving on from them
  • All of those things are very personal choices, and no one’s business but your own
  • None of them are betrayals of acceptance or other disabled people

The point of acceptance is to get past magical thinking.

It means seeing yourself as you actually are, without being consumed by either tragedy or the need to focus on overcoming disability. It means accepting where you are, and living now, without putting your life on hold waiting for a cure.

Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled.

Self-diagnosed people

Real Social Skills
A reader asked:
How do you feel about self-diagnosed autistics?
realsocialskills said:
I think that autistic people are autistic whether or not that they have been diagnosed.
I think people often know that they are autistic without a doctor telling them that they are. I have absolutely zero problems with someone thinking that they are autistic or wanting help. Even if it turns out that they are mistaken and not actually autistic. That happens sometimes, but I don’t think that’s hurting anyone, and I don’t think it’s a legitimate reason to object to self-diagnosis.
I think that people with disabilities need support, coping methods, and accommodations whether or not they’re diagnosed with anything.
I think we should move towards a world in which accessibility is seen as routine and normal rather than something people have to beg for access to. As it stands now, support resources for people with disabilities are often drastically limited. That is not the fault of people who identify their problems and support needs without medical diagnosis. Resources are scarce because our culture doesn’t value people with disabilities enough to make support readily available, or to routinely make accessibility and inclusion part of planning in schools, organizations, architecture, workplaces, or anywhere else. That’s the problem. Self-diagnosers who want help are not the problem.
There’s this notion that people with disabilities who need to do things differently are somehow trying to get away with something, and that they need to pass an extremely high bar to prove that they can’t help it. That attitude hurts all of us. Hating people who self-diagnose plays into that attitude, and it doesn’t help anyone.

Acceptance is the opposite of giving up

Real Social Skills

I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:

  • Advocate: Disability acceptance is really important. Disability is part of who I am.
  • Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
  • Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.

By acceptance, we do not mean either of those things. What we mean is more like this:

  • Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
  • Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
  • Childhood isn’t something you can flunk
  • Magical thinking will not help, and neither will centering your life around searching for a cure
  • Children with disabilities who live to adulthood usually become adults with disabilities
  • They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
  • It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
  • You can have a good life and be ok with your actual brain and body
  • Imagining that you will have a fundamentally different body one day makes everything harder
  • Life gets better when you accept yourself and work with your body and brain rather than against it
  • Shame is not a cure
  • Disability is not an emergency, and panicked intense early intervention will not make disability go away
  • Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
  • But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
  • Their life is already worth living and they don’t need to be cured to be ok
  • Don’t panic

Short version: Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.