disability – Page 12 – Real Social Skills

Being dependent on vs being limited by

September 18, 2013June 14, 2021 Real Social Skills

This isn’t quite the right concept but… these things are different:

being dependent on something
being unpleasantly or destructively limited by something

Being dependent on something can be really good. It can make things possible that weren’t before it. We’re all dependent on technology in one way or another (for instance, heating and air conditioning. Shoes. Large-scale agriculture.).

Sometimes people object to dependence because they think it will impose an unpleasant limitation. Even when it would actually make more things possible.

Like, someone thinks they (or someone in their care) shouldn’t use a wheelchair because then they’ll only be able to go where a wheelchair can go. They won’t be able to use stairs and such anymore. And sometimes this is true.

But often, this can mean that someone can only go as far as they can walk, and can only stay out for as long as they can stand. So they have trouble leaving the house, or going places for long periods of time. And are much more limited than they otherwise would be. Dependence isn’t bad, if it makes you able to do more things.

AAC can be like this, too. Verbal speech is more flexible, in principle, all things being equal. But all things aren’t equal, even for people who have some verbal speech. The important thing is for someone to have as much communication as possible. For people who get more communication from relying on things other than speech, dependence isn’t a bad thing. It’s good. It makes life better.

Getting more ability to do stuff you care about should be the goal. Not a particular way of doing it. Not judged against a theoretical ideal. Judged against what actually works best for you (or your child).

Shame is not a cure

August 18, 2013June 21, 2021 Real Social Skills

So, here’s the thing.

People with disabilities are taught that we’re just lazy. That eventually, if we care enough, we’ll be cured. That we can shame our way out of being disabled.

This is counterproductive.

If you can accept the way you are, the way your mind works, the way your body works –

You can figure out how to do things in the way that *actually works for you*.

And you can do a lot more, than if you’re stuck in the mindset of thinking that shame will cure you.

Shame doesn’t create abilities. Self-hatred doesn’t create abilities.

Acceptance creates abilities. Understanding and working with your real configuration rather than against it can greatly expand what you can actually do. Even though there are abilities you will never have. There’s a lot you can do, if you understand and accept yourself as you are.

The three second rule

August 7, 2013June 14, 2021 Real Social Skills

In some very informal contexts, it’s considered acceptable to eat food that you dropped on the floor briefly. This is called the three second rule. Here’s some things I think I know about it:

Procedurally speaking:

You have to pick up the food right away. That is why it is called the three second rule.
(The reason this makes sense is that if you only dropped it briefly, you know what happened to it. So you know that nothing even grosser happened while you weren’t looking).
The three second rule only applies to your own food. You can’t pick up someone else’s dropped food and eat it. Eating other people’s food is generally considered gross, and combining that grossness with eating dropped food makes it extra gross.

The three second rule only applies when you can presume that the surface you dropped the food on didn’t contaminate it. For this reason:

The three second rule does not apply if there were obvious changes to the food (eg: lint stuck to it or it changed shape)
The three second rule only applies to food dropped on a dry and apparently-clean surface (eg: it would be considered gross to eat a piece of candy you dropped in a puddle or in the dirt)
The three-second rule only applies to dry food (eg: not a lollipop you’ve already started licking, and not an ice cream cone.)

Contexts:

The three second rule only applies in very informal contexts
It tends not to apply outdoors, although local customs vary
The three second rule is usually about snacking; at an actual meal it’s usually considered rude to pick up and eat dropped food
(This might not be the case at some summer camps)
It does not apply in restaurants or other public eating places, usually

A note about disability:

If people know that you are disabled, they might think it’s always unacceptable for you to rely on the three second rule
Even when you’re doing exactly the same thing as everyone else
Folks might see it as evidence that you’re gross and don’t understand anything about hygiene and manners
If people are reacting to you this way, it doesn’t necessarily mean that you’re doing anything different from what others are doing
Or that you are failing to understand the rule, or that your disability is making it hard for you to understand the rule
It might just mean that people are unwilling to let you use the three second rule

Making the point about therapy more sharply

July 13, 2013June 20, 2021 Real Social Skills

Three year old children in preschool are some of the least socially powerful people in our culture. But, they are routinely given a lot of choices about what they do and how they do it.

They’re not usually required to do painful and boring things over and over with no regard to their feelings or their experiences. And, from time to time, they can say no to something an adult had planned for them and have it stick.

Preschool teachers know that their work depends in large part on getting the willing cooperation of most of their students. That doing things to them over their miserable protests over and over is probably going to end poorly.

All too often, therapy for people with disabilities is less respectful, consensual, and individualized than the average preschool class.

If you’re exercising more control over a ten year old kid with a disability than you’d feel comfortable exercising over a nondisabled three year old child, you’re doing it wrong. All the more so if you’re doing it to an older child or an adult.

Remembering that food exists

July 3, 2013June 21, 2021 Real Social Skills

It can be hard to remember that food exists, or notice it while it’s there.

I know a few things that work for some people to mitigate this problem:

For some people, cooking for other people regularly makes it easier to notice that food exists:

Sometimes remembering to cook for other people works as a reminder that you need to cook and eat
Sometimes the motor/sensory/tactile experience can make it easier to remember that you have food
Because for some people, motor memory works better than visual memory

For some people, asking other people for direct help is useful:

If you feel like you need to eat, asking a friend to tell you to eat might help
Or asking them what you should eat
Or how to find the food
Some people who can’t figure out food for themselves, *can* tell other people how to find food
So if you and a friend both have this problem, you might still be able to help one another

Stashing food in places where you’ll see it can also help:

Keeping a box of cheerios or granola bars or something else that lasts a while by your computer might work as a reminder that food exists

These are strategies I know about. Do any of y’all know about others?

Complicated power relationships in a work context

June 23, 2013June 21, 2021 Real Social Skills

A reader asked:

Someone contracting with you to do something is like a boss, but it’s a different relationship; such a person is a client and a client is more like a customer. It’s your job to do what the customer wants but the customer isn’t in charge of the business. Or maybe I’m off base. Of course, if the disabled woman didn’t hire and can’t fire this person, the person’s working for the parents, then, aren’t they?

I think the power relationships between assistants/PAs/whatever and folks with disabilities are a lot more complicated than that.

Even with a direct hire, it’s more complicated than other types of employment. For instance, hiring someone to write a webpage for you is really different than hiring someone to do things you need in order to survive.

Especially, given that when people murder folks who are disabled enough to need extensive care, they often get away with it.

And there are all kinds of complications I don’t understand well.

I don’t know more to say about this, though. Do any of y’all?

Remembering that people with disabilities have always existed

January 31, 2013June 20, 2021 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.

When you realize that it’s wrong…

January 23, 2013June 21, 2021 Real Social Skills

A reader asked:

I’m asking you because you are a good person. My brother has dyslexia and all his life he was bullied to think he was worthless, a mistake of our mother. I admit I have my parcel of blame in this, but I too was raised to think of him of a lesser being by our grandmother. These days he’s being bullied by his teachers, expecting him to get higher grades, again, like mine. He asked me the other day what he would do with his life, because he really thinks he is unskilled and is a big waste of time and space. He asked me what he is good with, because from his eyes, he can’t do anything right.

I honestly don’t know what to say to him and I know this is pretty much because I was born resembling my grandmother with my father’s memory while he resembles mother in almost everything, whom grandmother hated until she died.

I don’t know what to do, please help us.

I don’t know your brother and I don’t know what he’s good at, so I can’t address that directly, but, here’s what I can suggest:

Talk to him about the abuse

Tell him that what you and your grandmother did to him was wrong
Tell him that what his teachers are doing is wrong and disgusting
Tell him that he shouldn’t be treated like that and that it isn’t his fault
It’s not because of his grades, or anything about him. It’s because of prejudice and hate

Be honest about your part in it, and do what you can to treat him right from now on

Tell him that you’re sorry for your part in it, but don’t make it about you trying to feel better or get him to reassure you
Be specific about things you’ve done to him that you think were wrong
Don’t do those things
When he points out that you’re still doing those things, apologize and stop
Don’t expect him to trust you just because you’ve realized it was wrong – you have to stop doing it, over a long period of time, before it’s likely that you will seem safe
Listen if he wants to talk, but don’t push the issue

And here are some things I’d say to him directly, if I was talking to him rather than you:

It’s ok not to know what you want to do or are good at:

Doing stuff is awesome, and life gets better when you find good stuff to do
Everyone has worthwhile things they can do
It takes time and work and exploration to figure out what they are and get good at them
School isn’t conducive to this kind of growth for everyone
School is actively harmful to some people.
Having school and an unsupportive family undermine your ability to find things to do is really, really common for people with learning disabilities
It isn’t your fault that this happened to you, and struggling in that environment doesn’t suggest anything bad about you
You don’t have to be a super accomplished superhero to have worth as a person. Don’t hold yourself to that standard.

Spending more time on things you like helps:

People who struggle with school are often taught that anything they like is a waste of time, and that they should stop doing it and spend more time banging their head against impossible or barely-possible assignments
That’s really bad advice; you can’t develop your interests and abilities by renouncing everything you like
Finding stuff you like and are good at is more important than faking normal at school.
If you like video games, play them
If you like TV shows, watch them
If you like cooking, cook things
If you like talking to people online, find people to talk to
Etc etc. These are just some examples of things some people like, not necessarily things you do or should like. Do things that *you* like.
Doing things you like is important. Even if they’re activities other people don’t value very much. You have to explore to find out what you like and can do well. And you need space to do that in. So, take some space.

Acknowledging limitations creates abilities

People with disabilities are often taught that if we don’t acknowledge limitations, we won’t have any
And then we are forced to spend lots and lots of time and effort pretending that this is true
We spend so much time pretending that we can do things and forcing ourselves to do things that are barely possible, that we don’t have much available for anything else
If we acknowledge limitations and stop doing that, then all that time and energy becomes available for doing other things
And then we can actually start doing things well and succeed at things
Acknowledging and understanding disability is one of the most important life skills anyone with a disability can develop.

Connect with other people with similar issues:

Special ed teachers and other alleged experts often don’t know what they’re talking about
They will often advise you to do actively harmful things
Peer support from other people with related disabilities helps, because they often know what they’re talking about and have strategies for dealing with it.
In any case, judge for yourself and do what you think will help you. No one else gets to tell you what your coping strategies have to be.