disability acceptance – Real Social Skills

You can’t fight stigma by making disability unspeakable

September 16, 2017June 9, 2021 Real Social Skills

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.

When professionals assume that parents of disabled kids see ghosts

May 16, 2016June 9, 2021 Real Social Skills

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting.
They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible.
At some point, the parents are forced to confront their child’s disability.
They lose their fantasy of the child they expected, and this is emotionally devastating.
In order to move on, they have to mourn the loss of the child they expected and the life they expected.
Parents need emotional validation and help working through that.
All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

Children want adults in their lives to see them, approve of them, and love them.
When parents are seeing ghosts, they’re not seeing their real child.
Children can tell when adults in their lives are looking past them. It hurts.
When parents are mourning for the child they expected, they are disappointed by the child they actually have.
Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
And it especially hurts when the child has no control over the things that are disappointing their parents.
While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

There is often a tendency to pretend that kids don’t know.
But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
Kids need people in their lives who see them, and not ghosts.
Kids need people in their lives who can accept and value them as they are.
Sometimes that can’t be their parents. Or can’t (yet) be their parents.
But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters.
If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

The professional narrative about grief and mourning does not accurately describe all parents.
Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
Not all of these feelings are negative.
Even when parents have negative feelings, they’re not always grief.
Sometimes parents feel overwhelmed and confused about how to support their child.
(Or worried about how to afford the things their child needs).
(Or repulsed by things professionals are telling them to do to their children as therapy.)
Sometimes parents feel ashamed about not having noticed sooner.
Sometimes parents feel concerned that they may have caused their child’s disability.
Or any number of things.
Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

The grief and mourning narrative is strong and pervasive.
Parents are often expected to describe everything they’re feeling as grief.
Parents are often not given any support in working through the other feelings and doubts they are having.
This can result in parents being pushed into a mourning process that wasn’t actually necessary for them.
It is very damaging to both parents and children when this happens.
It is not good to grieve for the living. When it’s avoidable, it should be avoided.
It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily.
(Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Short version: There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

Disability does not end where values begin

November 24, 2015June 9, 2021 Real Social Skills

One of the most painful aspects of disability is that it can interfere with treating people the way we’d like to treat them, and doing what we’d like to do for them.

Disability makes some things hard, and other things impossible. Often, we have values that say it’s important to do the thing anyway. This does not actually make it possible to do the thing. Caring about others doesn’t make disability go away. Accepting and accommodating our limitations works a lot better. We can only do things that are possible, with the brains and bodies we actually have.

For instance, body language:

People communicate a lot of important things through body language
Some people can’t see well enough to understand body language
Others have insurmountable cognitive barriers to understanding body language
It’s important to listen to what people are saying. That doesn’t make it possible for everyone to understand body language.

Understanding speech:

Most people communicate a lot of important things through speech
Some people can’t understand speech
(Either because they can’t hear well enough, or for cognitive reasons)
It’s important to listen to people. That doesn’t make it possible for everyone to understand speech

Text communication:

There are often competing access needs in text communication
Some people can’t read walls of text, and need whitepsace
Some people aren’t capable of putting in line breaks (or aren’t reliably capable of doing so)
Some people need simple language to understand things
Others are incapable of changing their language use, and have to use big words in order to communicate
The importance of listening doesn’t make it possible for people to understand every kind of writing.
The importance of communicating in a way people can understand doesn’t make it possible for everyone to communicate in every way people need
Sometimes there needs to be an interpreter

Inaccessible buildings:

Some important meetings take place in inaccessible buildings
Some people can’t climb stairs (or can’t do so reliably)
The importance of the meeting doesn’t make it possible to climb the stairs
Even if someone you care about really, really needs your help with what’s going on at that meeting

Outdoor events:

Some people can’t be outside for extended periods safely
(For any number of reasons)
This is just as true when there’s an important protest. Caring about the issue doesn’t make being outside any safer.
Or when there’s a wedding or something. Caring about friends and family doesn’t make it any safer to be outside

Recognizing people:

Most people want people they know to recognize their face and remember their name
When people aren’t recognized, they often feel like no one cares about them
Some people can’t recognize faces
Some people can’t remember names
Understanding the importance of recognizing names/faces does not make it possible for everyone

Intermittent abilities:

Some people can do certain things only some of the time
They may be able to push really hard and do it in an emergency
Or it might fluctuate in ways they have no control over
That doesn’t mean they could do it reliably.
Caring about something doesn’t make it possible to do it all of the time.
Disability is real even when it’s intermittent.

There are any number of other examples. When something is physically or cognitively impossible, it’s still impossible when it’s important. When it’s dangerous, it’s still dangerous when it’s important. Caring about other people doesn’t make disability go away.

Whatever we do, we have to do as who we are.

Short version: Disability makes some things hard, and other things impossible. Often, we have values that say it’s important to do the thing anyway. This does not actually make it possible to do the thing. Caring about others doesn’t make disability go away. Accepting and accommodating our limitations works a lot better. We can only do things that are possible, with the brains and bodies we actually have.

Disability acceptance for partners

May 21, 2015June 10, 2021 Real Social Skills

Anonymous said to realsocialskills:

Hi, my boyfriend is autistic on the Aspergers spectrum and I don’t know what to do when he’s overloaded. I just really want to help him calm down again.

Is there any advice you can give me?

realsocialskills said:

There’s a lot of things that could be going on. I don’t know you or your boyfriend, so I can’t really tell you much that’s specific to your situation.

I think it’s possible that you may be taking too much responsibility for your boyfriend’s overload. If so, it would be better for both of you if you let it go a bit.

There’s a narrative in the media that’s common, and destructive, that goes like this:

Disabled person (usually a man) can’t function
He meets an amazing person (usually a woman), and they get involved romantically
Through the transformative power of love, he is healed
Then either he stops being disabled or his attitude changes in a way that means disability no longer matters in any significant way

Sometimes this goes along with another trope, “the only disability in life is a bad attitude”.

People who buy into that trope believe that disability only matters if they let it matter.
And they disability can be ~overcome~ by positive thinking and not being bitter.

For disabled people, this narrative pressures us to pretend that disability doesn’t matter. Or to make it stop mattering through sheer force of will. For people who love us, it creates pressure to fix everything and make disability irrelevant through the power of love and support. In real life, neither of those things work.

In real life, disability matters no matter what people think about it and no matter how much others love them. Having a good attitude can make life better; it can’t make disability irrelevant. Love can make life better; it can’t make disability irrelevant either. Disability goes deep, and it affects a lot of areas of life. And sometimes things are hard.

Part of being a good partner to an autistic person is accepting that autism is going to matter. No matter how wonderful you are, you’re not going to be able to stop autism from mattering.

I don’t know what’s going on with your boyfriend and his overload. I do know that, for many autistic people, overload is an inevitable fact of life. Sometimes, it’s the price of admission for doing certain things we care about. Overload is not always something you can prevent or fix. Sometimes the decisions get complicated.

Your boyfriend is the one who is responsible for figuring out how he wants to approach overload. He is the one who needs to decide which risks are worth taking, which are worth avoiding, and how he wants to handle it when he is overloaded. You can’t protect him from this.

You might be able to help with some of it some of the time. Many autistic people like certain kinds of support in dealing with overload, for instance:

Having someone else pay attention to signs of imminent overload and point them out
Being reminded that leaving is an option
Being reminded that it’s ok to be autistic in public and that they can stay if they want
Help leaving an overloading place
Being left alone and having someone else run interference to keep other people from trying to intervene
Having a stim toy handed to them
Knowing that people they’re with aren’t going to try to stop the overload and will leave them alone
Water
Help finding a quiet place to go
Being able to hold someone’s hand
And any number of other things

Note that many of these things are mutually exclusive. Autistic people have wildly different needs and preferences around handling overload. I don’t know what your boyfriend needs or wants; that’s for him to determine.

The only way to find out what your boyfriend wants you to do when he gets overloaded is to ask him, and to listen to what he says.

It’s worth having this conversation when he’s not overloaded and is able to communicate readily.
It’s also important to listen to what he says when he’s overloaded, even if it contradicts what he’s said before (unless he told you beforehand not to)
The question shouldn’t be “How can I calm you down?”, because that might not be possible or something he wants.
The question should be something like “When we’re together and you get overloaded, how do you want me to react?”
It’s ok if he doesn’t want to have an intimate discussion about overload, and it’s ok if he doesn’t want your help.
But you do need to know what he wants you to do in that situation, and so it’s ok and important to ask.

Short version: Autism acceptance is important for partners of autistic people too. You can’t fix everything or make autism stop mattering. Sometimes things are going to be hard for us no matter what you do. Whether we want help, and the kind of help we want, varies from person to person. If you want to know, it’s important to ask.

Why I say that all autistic people are disabled

April 23, 2014June 21, 2021 Real Social Skills

A reader asked:

I get where you’re coming from saying all autistic people are disabled, but I’m autistic and don’t consider myself disabled, because I move through the world with no external accommodations. I feel uncomfortable claiming the word disabled and I feel more uncomfortable when people apply it to me without my consent.

realsocialskills said:

Here’s what I mean by saying all autistic people are disabled:

Autistic people, *all* autistic people, have things that they can’t do that almost all neurotypical people can do.

That’s a significant fact. And it doesn’t go away because you’ve arranged your life in a way that works for you. And losing site of that can cause a lot of problems.

To use a personal example:

I have a terrible sense of direction. I absolutely need my iPhone to be able to go anywhere new by myself without allowing an extra hour to get lost. That’s true no matter how simple the route is.

I have, at many points, forgotten that I am disabled in this particular way. In my day-to-day life, I normally stay within a small range of a few very familiar city blocks. So I don’t experience my disability, I don’t notice I am disabled. I even, sometimes, forget that I am impaired in that way. I used to get myself into a lot of trouble assuming that I’d gotten over it.

Similar things happen with executive functioning. I need a lot of cognitive cues to be in place to be able to do things. If they’re there, then I can forget that I have problems doing stuff. Which can cause serious problems if what I need to do shifts and my existing cues don’t work anymore.

Understanding that I haven’t gotten over disability and I’m not going to get over it helps me to function better. Because whether I notice my disability or not, it’s always there. When I remember and acknowledge that I am disabled it, I can plan to accommodate my disability.

I think this is true of all autistic people, whether or not they identify as disabled.