I’ve encountered a lot of parents and professionals who are reluctant to talk to disabled children about their disabilities.
People often believe that children with disabilities are innocent, and that they can protect their innocence with silence. They express concerns along the lines of “I don’t want him to think something is wrong with him,” or “I don’t want her to feel different,” or “I don’t want them to feel bad about themself.”
You can’t protect disabled kids this way. They know that they are different, and they know that this difference is perceived negatively.
Some examples of how kids figure out that they are different:
- Kids watch what other kids do.
- Typically developing younger siblings develop skills that they still haven’t mastered and may never master. They notice. They also notice how their parents react to this.
- Kids with disabilities often see other kids their age doing something that looks fun, try to join in, and find that they can’t keep up. They notice, and they have feelings about this.
- They also notice when other kids think they’re weird or boring and avoid them.
- If they go to a special education program, they notice that other kids don’t take the short bus to school (and they hear what other kids say about the short bus, or they see it in their body language.)
- They also notice that their school is really different from schools on TV and in stories.
- All the kids their age on TV and in stories can do things that they can’t do. They notice.
- Disabled kids often struggle to understand something that’s clear to everyone else in the room. They notice that this happens a lot.
- Kids with disabilities get called the r-word, or the moral equivalent.
- Adults expect them to do things that they can’t on a regular basis. Other kids their age can. Adults are disappointed or angry. They notice.
- Kids notice when they have to go to therapy and other kids don’t.
- Kids notice when doctors hold them down for painful procedures while they struggle and cry. They notice that this doesn’t happen to kids in stories and that it’s not in any of the books about being a kid.
- They notice that they have a lot of tests and that they’re talked to in ways that other kids aren’t.
- They are often required to follow rules that other kids don’t have to follow. They notice that, too.
- Parents talk about how tired, scared, and overwhelmed they are by their child’s needs or navigating the systems. Kids overhear.
- Many kids also eventually overhear the name of their condition and google it.
- And any number of other things.
Your silence doesn’t protect them from any of these experiences; it just isolates them. Kids are already bearing the pain of disability and of other people’s reactions to their disability. If no one will talk to them about it, they are also very, very alone. You can’t protect their innocence; you can break the silence that isolates them.
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.
- 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
- 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
- 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
- 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
- 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
- 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.