Power is not evidence example: restraint in schools

Real Social Skills

https://todaynews.today.com/_news/2013/02/06/16873189-school-staff-duct-taped-girl-with-down-syndrome-to-her-shoes

Staff members in a school held down a young girl with Downs Syndrome and forcibly taped her shoes to her feet with large amounts of duct tape. 

That’s all we know, from the story.

The fact that strong adults decided to do this isn’t evidence of anything else. In particular it’s not evidence that:

  • She was especially disruptive, or:
  • She was doing something urgently dangerous, or:
  • The teachers were overwhelmed, or:
  • This was a last resort done only after gentle options were exhausted, or:
  • She is exceptionally difficult to care for, or:
  • She doesn’t belong in the class she is in, or:
  • Her disability made the problem hard to solve, or:
  • Anything remotely like that

But, a good percentage of the people reading and commenting on stories like this seem to be assuming that, if this happened, there’s a good reason it happened, and that the reason had something to do with the child and her disability. This is the assumption even of a good percentage of people who think the staff were wrong to do this to her.

It is hard not to make that assumption. It’s really ingrained.

But power is not evidence, it is not a reasonable assumption to make. And it is important to bear that in mind.

Methods for making words come out

Real Social Skills

Some things that work for some people who sometimes have trouble making words:

Typing

  • Sometimes text-based communication works better
  • Sometimes using email or instant messaging or text messaging will make you able to use words when you couldn’t do so with your voice
  • When that doesn’t work, sometimes typing random nonsense or quotes or something can get you into a mode in which you have more words to use

Speech

  • Sometimes if you can say any word or phrase, it makes other words start working
  • For instance, saying lines from a book or TV
  • Or, frustratingly, sometimes explaining inability to speak makes it easier to speak
  • If it’s a particular word you can’t find, describing the thing can work

Sounds:

  • Sometimes making sounds that aren’t words works as expressive communication
  • Sometimes making sounds can make words come after

Moving

  • Sometimes waving hands can help make words come out
  • Or making gestures of other sorts, like pointing at things

Something about body language

Real Social Skills

It’s very common for atypical people to be told that they have no body language, whether or not this is actually true.

If you:

  • Have an atypical body, or:
  • Move in unusual ways, or:
  • Have an atypical face, or:
  • Speak oddly

Lots of people will tell you that:

  • You have no body language, or:
  • You have no tones of voice, or:
  • You’re impossible to read, or:
  • You have a flat affect, or:
  • You have no facial expressions

This can be for all kinds of reasons that have nothing to do with whether or not you have these things. For instance:

  • People who find your body uncomfortable, and try to avoid looking, tend not to pick up on body language
  • Likewise with faces – someone who isn’t looking at your face because they don’t want to see its odd shape, may well think you have no facial expressions because they aren’t seeing them
  • If you move unusually, you may have body language that many people aren’t familiar with. This doesn’t mean you don’t have any. It means their social skills are lacking.
  • For instance, they may not realize that rocking and hand flapping are often forms of expressive body language.
  • They may be assuming that people like you don’t have body language etc, and therefore actively ignoring yours because it doesn’t have a place in their worldview.

It may be true that you don’t have body language, tones of voice, facial expressions, or whatever. But it may not be, and it’s very common for people to get this wrong.

Not everything is your problem

Real Social Skills

When someone is abusing you:

  • It’s ok not to care why they’re doing it
  • Their circumstances aren’t your problem
  • Neither is their childhood
  • Neither is the possibility that they’re playing out abuse patterns they learned as an abuse victim

These are larger social issues. It’s important that some people work to address them.

But not you. Not with regard to your own abuser. You don’t have to wait for huge social problems to be solved to be allowed to demand that a specific person stop abusing you.

It’s ok, and advisable, to focus on protecting yourself.

Don’t assume marginalized people are safe

Real Social Skills

Sometimes people who are marginalized assume that other marginalized people are safe by definition. This is really dangerous, and it sets people up for a lot of gaslighting. We need to make sure not to encourage this in activist and otherwise pro-human spaces.

For example, some people do things their stereotypes say they’re incapable of doing:

  • Some women are sexual abusers
  • Some autistic people are manipulative bullies
And also, sometimes people do bad things that are (wrongly) stereotypical of their group. For instance:
  • Some gay people are sexual predators
  • Some members of minority faiths are destructive fundamentalists.
Some people in marginalized groups do stereotypical or anti-stereotypical bad things, and when this happens, it’s important for activist and other pro-human groups to acknowledge it and not tolerate it.

If you know someone else is in a marginalized group, that’s all you know about them. Don’t assume that they know what it’s like to be mistreated, and are thus safe and trustworthy and would never harm another person. *Especially* when their actions have shown otherwise.

A practical example: Assume that baby talk is unwelcome

Real Social Skills

People who express opinions on that matter almost universally say that they don’t like being addressed in cutesy baby talk voices.

Despite this, many people talk to non-verbal adults in baby talk voices, on the assumption that it’s ok because they’re low functioning, or have a young mental age, or something. 

This is bad. Being unable to say no does not imply consent. And if someone can’t say no (or has been taught not to), it’s important to be especially careful to avoid doing things to them that they are likely to dislike. 

Since you know that most adults dislike baby talk, you shouldn’t use baby talk voices with adults. Especially if they are adults who can’t talk or who usually aren’t listened to.

Edited to add: Except adults who like baby talk and have made it clear that they prefer it in some contexts. People are allowed to have unusual preferences.

Example of assuming we’re not listening: TalkingTiles

Real Social Skills

There is an AAC app called TalkingTiles, that uses an interesting approach to managing communication pages. It offers cloud-based subscriptions and a library of available tiles, and can sync across multiple devices. It’s also possible to edit communication pages on a computer rather than on the iPad or whatever other mobile device it’s running on.

That’s good. What’s bad, is that they think of the users of this app as parents and therapists working with people who need communication software. They don’t seem to consider the people who actually use the app for expressive communication to be users; the app is something that is used on them rather than by them.

They describe it thusly:

TalkingTILES has helped those inflicted with a communication disability brought on by a neurological disorder (such as Autism, Cerebral Palsey, ALS or Parkinson’s) as with those who have suffered a trauma (such stroke or brain injury). We’ve taken a collaborative approach to AAC bringing together professionals (therapists, educators and support workers) and their clients,caregivers and families, enabling remote programming and remote content sharing across each other’s devices making AAC therapy more productive and efficient for both client and professional. 

Do you see what’s missing here? The end user, the person who will actually be using the device to communicate, is not addressed directly.
And it’s much more explicit in the user accounts. You have to have a cloud-based subscription to make the software do much, and there are two kinds of accounts:
TalkingTILES for Professionals & Caregivers :

• Professional AAC Support Teams – therapists, educators & support workers- your Mozzaz Cloud Subscription is FREE. We want you to learn, try and trust TalkingTILES as an effective AAC solution for your clients.
 
• Caregivers & Families – we understand the challenges and commitments that come with supporting and helping your loved one with a communication disorder. TalkingTILES offers the most flexible and adaptable AAC app that can be tailored to your personal needs at a very affordable price. We make AAC therapy productive and efficient through our collaborative model with professionals on your team. A Mozzaz Cloud Subscription plan will save you time, money and be more efficient with your AAC goals and programming.
There isn’t an option to register an account for yourself, as the person who will actually be using the app to communicate. There should be. People who use software to communicate have agency, and sometimes look for software options for themselves. Product descriptions, marketing, and design ought to take this into account.
When you’re designing adaptive equipment or software for people with disabilities, please remember that people with disabilities use it, and address them when you describe your product.

Remembering that people with disabilities have always existed

Real Social Skills

Content warning: This post talks about institutionalization in graphic terms. Proceed with caution.

Sometimes people say things like this:

  • “When I was a kid, no one had all these learning disabilities and syndromes!”
  • “We’re all so much sicker these days. I never heard of all these diseases until recently.”

And – people who say this? You know why you never met anyone like this as a child?

Because, when you were a kid, people with learning disabilities, syndromes, illnesses, etc weren’t allowed to go to your school. A good percentage of them weren’t even allowed to live in your town.

They were kept away from people like you, and kept in horrifying conditions, so that you and other more socially valued people wouldn’t have to see them or know they existed. (It’s not your fault. You were a child and didn’t know. But it was done in your name, partly.) And a lot of them did not survive childhood because they were not given the care that would have made it possible. And this isn’t over. This still happens.

(And people with disabilities are still afraid of it happening to them).

But thing are getting a bit better – or, more accurately, people who have been fighting this evil for decades are starting to win.

So, these days, many children like those who were carefully kept away from you and your peers are allowed to grow up in families. In schools. As part of their communities. Visibly. And, this means more of them are suriving childhood.

And some adults with disabilities are now treated as adults and allowed to acknowledge disability without forfeiting adulthood. Not everyone, not yet. Not enough. But some. More than there used to be, fewer than there should be.

People with disabilities have always existed. And the fact that everyone now has to notice that they exist is a dramatic improvement. It’s a good thing that you see more people with disabilities now. It means some of them aren’t brutally hidden in institutions. Your children are growing up in a better world than you did. Remember this.

Expertise and credentials aren’t the same thing

Real Social Skills

Generally speaking:

  • It’s possible to have credentials without being an expert.
  • It’s possible to be an expert without having credentials.

Some specific examples

  • Someone with Special Autism Training isn’t necessarily an expert in communicating with autistic people
  • It’s actually likely that they’ve been thoroughly taught to be incapable of doing so
  • People with rare medical conditions often know things most doctors they encounter don’t
  • Someone with a college degree might not know as much as someone who studied the same subject privately

This doesn’t mean credentials are irrelevant – but they only tell you so much. Don’t confuse them with expertise.

Autonomy includes the right to be wrong

Real Social Skills

Irrational people have the right to make choices.

Personal autonomy is not conditional on other people thinking that you are using it correctly.
That’s pretty much what makes it personal autonomy.
For instance, people have the right not to interact with dogs
  • Even if the only reason they don’t want to is that they have a phobia
  • Even if the phobia is completely irrational
  • Even if they would be better off getting over the phobia and learning to like dogs
  • None of this gives anyone the right to make them interact with the dog
  • That’s their business and their choice
People have the right to decide what they eat
  • Even if it’s for ridiculous reasons
  • Even if they think it’s healthy and it isn’t
  • Even if they are in the grip of food fads and think that avoiding the color blue will solve their health problems
  • Even if they’re too religious for their own good
  • Even if they’re picky
  • Even if they’re fat
  • Even if they’re thin
  • Even if they’re being overly cautious about their allergies
  • Even if they are completely, utterly wrong
  • People have the right to make their own decisions about these things
People have the right to end relationships

  • Even if they’re only doing it because of a fear of committment
  • Even if the person they’re breaking up with has all kinds of reasons for thinking the relationship is a good idea
  • Even if they’re going to regret it
  • Even if it’s a stupid decision
  • People have the right to make their own choices about who who spend time with and be close with
People have the right to choose how to spend their time
  • Even if they are wasting it
  • Even if they will regret wasting it
  • Even if they have tons of potential and could be accomplishing so much more if they just applied themselves
  • Even if they watch a lot of TV and have terrible taste in TV
  • Even if they express dissatisfaction with the choices they are making
  • People’s time is their own, and they have the right to choose how they spend it.
The right to make choices includes the right to make mistakes.