disability matters

Recognizing uniqueness is not a substitute for thinking about disability

Teachers who are really good at teaching typically developing kids sometimes have trouble understanding the significance of disability. I’ve heard a lot of things like “all kids are unique” and “I always individualize my approach for every kid” and “I don’t see the need to label any kids as disabled, it’s just a matter of finding what works for them”.

This sounds positive, but it can be a disaster for kids with disabilities.

We talk a lot about uniqueness, but a lot of effective teaching depends on understanding ways in which kids are similar to each other. Developmentally appropriate practice means understanding how kids the same age are similar to each other — then being flexible in ways that recognize kids’ unique humanity. We develop a sense of what the range of difference is for kids of a particular age.

Kids with disabilities are more different than that, and we need to take those differences seriously. Disability matters, and practices based on typical developmental milestones don’t account for it.

For instance:

Developmental milestones tell us:

  • Two year olds don’t have the motor skills to support handwriting.
  • Early education helps two year olds develop the motor skills that will eventually support handwriting.
  • Ten year olds do have the motor skills to support handwriting.
  • If they’ve had appropriate education, ten year olds should be able to write.

Developmental milestones don’t tell us:

  • How to teach ten year olds who don’t have the fine motor skills to support handwriting.
  • What early literacy and pre-writing instruction looks like for young children who are unlikely to develop the motor skills needed to support handwriting

It’s also important to understand the difference between unusual and unique. Disability means having unusual differences. But not every difference is unique. Some differences are shared by other people with disabilities. Those shared differences are important.

We need to understand the disability-related similarities. Part of that is having the right words to describe them. Calling disabilities by their right names isn’t about labeling, it’s about breaking isolation and making important things speakable.

For instance:

Braille:

  • Braille exists because blind people need it to exist
  • The differences between sighted people and blind people are a reason that braille needs to exist.
  • (And a reason that Braille is better than raised print).
  • The similarities between many blind people are a reason that braille *can* exist as a standard way of accessing literacy. 
  • If each blind person was completely unique, there would be no way to create a reading and writing system that would work for large numbers of blind people.

Some other examples:

  • Wheelchairs.
  • Ramps.
  • Large print.
  • Cars with hand controls and/or wheelchair lifts.
  • Text-to-speech communication devices.
  • VoiceOver and other screen reading software.
  • Signed languages.
  • Medications that manage symptoms.
  • Supportive seating.
  • The ADA, Section 504, IDEA and other disability rights laws.

People with disabilities are unique, and not interchangeable with each other. Similarly, kids the same age are unique, and not interchangeable with each other. Both the similarities and differences are important.

Tl;dr Sometimes progressive educators are uncomfortable with the concept of disability, and want to instead just see every kid’s uniqueness. That doesn’t work, because disability means having unusual differences — and because the differences aren’t unique; they’re shared with many other disabled people. Recognizing uniqueness isn’t enough — we also need to understand and accommodate disability.

You can do more when you remember that you’re disabled.

People with disabilities are often taught the anti-skill of pretending to ourselves and others that we have no disability-related limitations.

Most people (disabled or otherwise) have the related anti-skill of assuming that everyone present has pretty much the same physical and cognitive abilities. (Or, in other words, that no one present has a disability that significantly affects physical or cognitive functioning.) This often leads to the assumption that people who aren’t doing a task either haven’t been told what to do, or aren’t sufficiently motivated to do it.

These two anti-skills can make it very, very hard to solve problems when something goes wrong for disability-related reasons.

This kind of conversation tends to happen a lot:

  • Someone: You need to do the thing.
  • Disabled person: I’m having trouble with the thing.
  • Someone: “Can’t you just do the thing this way that sounds reasonable but is actually impossible for you?”
  • Disabled person: “You’re telling me it’s possible in tones of absolute conviction and are making me forget that I won’t be able to do it that way. Ok, I’ll do the thing from now on.”
  • The disabled person, predictably, fails to do the impossible thing.
  • Someone with an entirely reasonable need for the thing to get done: Why didn’t you do the thing?!
  • Disabled person: I don’t know. I’m sorry, I’ll try harder, I’ll do it from now on.
  • This, predictably, doesn’t work either. 
  • The task doesn’t get done, because it’s impossible to do things that way.
  • In these situations, disability is neither acknowledged nor accommodated, and things end badly for everyone.

Or, to give a less abstract example:

  • Aubrey has severe ADHD. She’s been fired from several jobs for failing to keep track of things and missing key deadlines, and she’s on thin ice at her current position. Blair, Aubrey’s boss, is running out of patience for the problems caused by Aubrey’s overdue work.
  • Blair: Aubrey, you’ve missed several deadlines, and it’s causing serious problems for the team. What’s going on?
  • Aubrey: I’m having trouble keeping track of everything.
  • Blair: Most of us here use to-do lists on our cubicle whiteboards. I’ve noticed you don’t have a to-do list on your whiteboard. Can you do that from now on?
  • Aubrey (who has never, ever used a to-do list successfully): Ok, I’ll start using a marker board and meet my deadlines from now on.
  • Blair believes that everyone can use to-do lists, and has never thought of the possibility that anyone might not be able to.
  • Blair is making a suggestion that from his perspective is completely reasonable and possible. 
  • Aubrey responds to Blair’s certainty, and forgets that her limitations will prevent that from working for her. 
  • She believes, in the moment, that if she tries hard and takes enough responsibility, she’ll be able to use the to-do list and meet her deadlines this time. 
  • Even though that’s never worked before, and there’s no real reason to believe that it will work any better this time.
  • Trying hard doesn’t make disability go away, and it doesn’t make impossible things possible.
  • Aubrey, predictably, fails to use the marker board, because that strategy doesn’t work for her. And she, predictably, gets fired, because the tasks need to get done and she’s not doing them.
  • From Blair’s perspective, Audrey was given a lot of patience, guidance, and multiple chances.
  • Blair has a legitimate need for the work to get done.
  • This is probably going to keep happening, so long as Audrey tries to rely on willpower to solve problems rather than honest assessment of her capabilities.

When others expect us to do impossible things, it can be hard to remember that they are impossible. Particularly if we’re told that they’re easy or that everyone can do them. Especially if we are surrounded by people who are successfully doing the thing.

All of this can be very disorienting, especially if someone whose opinion we care about is angry or disappointed. It can be surprisingly difficult to keep in mind that disability is real.

It’s also crucially important. Agreeing to do something impossible that “everyone” can do doesn’t magically give us the ability to do it. It just sets us up for failure.

We are all much better off if we face reality and spend time doing things that are possible. Everyone else does. It’s well-known that expecting people to do impossible things is counterproductive and demoralizing. Only exceptionally unreasonable employers expect people to lift 300lbs, sprout wings and fly, turn lead into gold, or decrypt 128-bit encryption keys in their heads.

It’s just as unreasonable to expect disabled people to do things that our impairments make impossible. One limitation we share with everyone is that pretending that something is possible won’t make it possible. We are much better off acknowledging reality, working with our brains and bodies rather than against them.

This is hard. Remembering the truth often requires us to fight through shame and disorientation, or to violate serious taboos. No one succeeds at this 100% at the time, but it does get easier with practice. It’s also really, really worth it.

Whenever you are able to stop trying to do an impossible thing through sheer force of will, it makes it more possible to do things. You don’t have to overcome disability to do things that matter. You just have to find things to do that are actually possible, with the abilities you actually have. The things that you really can do are worth doing.

AAC does not replace nonverbal communication

This is a continuation of a series on why I think it’s a mistake to ignore nonverbal communication in an attempt to force someone to use AAC. (The short version: it’s disrespectful, it undermines someone’s ability to communicate, and it prevents people from developing a valuable skill.)

One reason nonverbal communication is important for AAC users is that you always have your body with you. That is not necessarily the case for AAC devices.

AAC best practices say that someone should have them available constantly. In practice, people don’t. This is for several reasons. One is that it’s not practical to take a device to some places (for instance, most people are not willing to take a high tech device to the beach, and low tech devices are a lot more limiting.) Another reason is that sometimes people forget, or vastly underestimate how close a device needs to be in order to be immediately available. Or any number of reasons, some innocent and some horrifying, and many a mixture of both.

Also, people take devices away from AAC users. They shouldn’t, but they do. Sometimes it’s accidental; sometimes it’s on purpose. It’s never ok, but people do it a lot. If you’re teaching a nonverbal child to communicate, you need to keep this in mind when you’re considering what to teach them. You can’t assume that people will always treat them appropriately, and you can’t assume that they will always have their device. If they are capable of communicating with their body, it is an important skill for them.

Whatever else happens, someone always has their body with them. People can do a lot more if they can use their body to communicate. Communicating in body language can make it possible to communicate in a swimming pool. It can make it possible to communicate with dirty hands. It can make it possible for someone to indicate that their device isn’t within reach and that they need it. It can make it possible to communicate about pain in medical situations. It can make it possible to communicate when someone else doesn’t want you to, and has taken your device away. It can make friendship possible that otherwise wouldn’t be. And any number of other things, all of which are important.

And in order to be able to communicate with body language, people need opportunities to practice and develop this skill. If you ignore someone’s nonverbal communication to encourage AAC use, you’re making it harder for them to develop comprehensible body language. That’s not a good idea, because comprehensible body language is important. People won’t always have access to their device. They will always have their body.

tl;dr Nonverbal communication is important for nonverbal people, but parents are often encouraged to pretend not to understand it in order to encourage AAC use. This makes it harder for people to develop body language that others can understand. One reason this is a problem is that people don’t always have access to their devices, but people *do* always have access to their bodies. Nonverbal people should have support in developing nonverbal communication, because it is an important skill.