Disability is not a number

Real Social Skills

Disabled people are as different from each other as we are from nondisabled people. Sometimes people don’t understand this. Instead of looking at specific impairment, they look at what they think of as severity. It’s as though they’re thinking, ok, on a scale of 0-10, how disabled is this person?

This can lead to a bizarre opposite reaction to disability and disabled people. People not only respond to disability based on stereotypes, they often respond based on the stereotype of a completely different disability. 

For instance, sometimes people who think of blindness and deafness as the same level of disability will respond to blind and deaf people interchangeably. (And often in ways that wouldn’t be helpful in any case). Because they don’t think about vision or hearing, they think about a severity category. 

Eg: a waiter who thinks this way might see two people signing to each other, notice that they are deaf and bring them a braille menu. Or they might, halfway through taking an order, notice that the customer is blind — then start talking really loudly. 

They don’t pay attention to the physical reality of the person they’re interacting with. Instead of thinking about what this person’s disability is and what accommodations they need, they’re looking in a box marked something like “what to do when you meet a level-8 disabled person”.

In real life, disability isn’t quantitative, it’s qualitative. Having a disability means something physical and/or cognitive, which will be different for every disabled person. It matters what type of disability someone has. It matters how that disability affects them, specifically. It matters what their preferences are, and what they’ve found works for them. Thinking in terms of severity level won’t tell you any of the things that matter most.

Braille is not a language

Real Social Skills

Braille is not a language. Braille is a system for making printed words accessible to blind people.

All braille looks the same visually.  Braille is always read left-to-right, even in languages that are printed right to left. Languages that are printed in different alphabets still look the same in Braille.

For example, even though Hebrew and English look dramatically different in print, they look the same in Braille. This can sometimes mislead sighted people into thinking that Braille is its own language, but it is not.

The only major difference between Braille and print is that Braille uses raised dots instead of visually distinct letters. (A minor difference: Braille uses a lot of contractions to make it less verbose.)

Braille is not translation, and putting something into Braille does not change the meaning.

If an English book is brailled, it’s still in English, and it still has all of the same words. It hasn’t changed languages; it’s just been encoded in a way that makes it possible to read by feeling rather than seeing.

Short version: Braille is not a language, and brailling books doesn’t change the meaning, Braille just makes it possible to read with your hands.

ASL is a language

Real Social Skills

American Sign Language and other signed languages are languages. It’s important to respect them as languages.

ASL is not English. It is a completely different language. Similarly, signed languages aren’t all the same. British Sign Language is completely different from ASL.

Signs are not universal, any more than spoken words are universal. The meaning of a sign isn’t always obvious just by watching; many signs are completely arbitrary.

Sign is not pantomime, and it’s not ad hoc gesture. It’s also not like symbolic gestures that are sometimes made up to accompany kids songs either. It’s a language, with all the complexities of language. The difference is important, and it needs to be respected. 

In order to know what signs mean, you have to learn them. (Just like in order to know what spoken words mean, you have to learn them.)

ASL is not just gestures, any more than spoken languages are just sounds. ASL has grammar, vocabulary, and culture. It’s important to respect this and not erase it.  

Rebuilding what was built incorrectly

Real Social Skills

Most of our social infrastructure was built incorrectly. It was built on the assumption that everyone is basically physically and cognitively similar, and that people who aren’t need to go away and be someone else’s problem.

People with disabilities have been treated as disposable. Children have been kept out of school; adults have been excluded from higher education. People have been institutionalized, and many are still stuck in institutions. 

People live without freedom, and are kept from their communities. People are forced to stay unemployed rather than supported in finding work that they can do. Disabled people have been harmed in any number of ways.

It has always been wrong to exclude people with disabilities like this, and in recent years, more people have come to understand that it is wrong. Accessibility and inclusion are on the table much more often than they used to be (in significant part, because the disability rights community has insisted that they be there.) 

Part of what we have to do is be willing to be inclusive, and be willing to change things for the sake of access. That’s necessary — and it’s also not enough. There are a lot of access needs that we flat-out don’t know how to meet right now. For some people, nothing we currently know how to do is good enough.
In order to build a more accessible and inclusive culture, we’re going to have to create things that don’t currently exist. We need better infrastructure and support. We need better technology. We need more resources, and more understanding that funding disability needs to be a priority. We need research and development, we need to learn a lot of things that we don’t currently know. 

The only way to get better at accessibility and inclusion is to start from where we are, and to commit to getting better at it. We can’t wait to be ready; we will never be ready. What we can do is understand that the people who are still being excluded matter, and keep building the things that need to exist.

Acceptance makes responsibility possible

Real Social Skills

Sometimes disability and responsibility are seen as opposites. This is destructive, and it’s related to a taboo against acknowledging disability and ability at the same time.

Within this taboo, either we’re seen as basically just like everyone else, or we’re seen as basically unable to do anything that matters. This makes it very difficult to develop a sense of what it means to be responsible as a disabled person.

People who want us to see ourselves as capable often teach us to try and ignore our bodies, so that we can pretend that we’re really just like everyone else. This teaches us to pretend to have abilities we don’t have — and to make promises that we can’t keep. 

On the other hand, we’re often taught that being disabled means that our promises don’t count for anything. That it’s just a symbolic gesture, and that no one is ever counting on us in a real way. That everything we do is just practice, or symbolic, or someone else’s charitable attempt to include us. (Eg: a kid with a disability may be put on a baseball team nominally, expected to attend practices and games, never taught to actually play, and given the chance to hit a fake home run late in the season as a feel good event.) This can make it really, really hard to learn that it matters what we do.

There’s nothing inevitable about this. Disability doesn’t have to mean magical thinking and constant broken promises, and it doesn’t have to mean a never-ending stream of fake tasks. It can mean understanding the bodies we live in, and the minds we have. It can mean taking all of that into account when we decide what to do, and when we make promises. We can take real responsibility and do things that matter.

Inclusive education: presence, participation, and learning

Real Social Skills

There are three components of inclusive education that matter a lot, which tend to get conflated:

  • Being present and welcome
  • Access to participation
  • Access to content

Being present and welcome means:

  • A person with a disability is in the room
  • Their right to be there is not questioned
  • People want them to be there
  • They’re seen as a student and treated as a peer by other students
  • They’re treated more or less respectfully
  • This doesn’t necessarily mean that they’re being taught the material, or that they’re meaningfully participating in educational activities

For instance:

  • A child with a disability may go to kindergarten, and spend a lot of time watching other children do educational activities.
  • Everyone might be very happy that they’re there.
  • Other children might like them, and play with them during recess or free play time.
  • They’re still left out of most activities
  • They’re still not being taught the same material as everyone else

Access to participation means:

  • When students are doing an activity, the disabled student isn’t left on the sidelines
  • They’re given something to do that makes them part of what’s happening
  • This doesn’t always give them access to the content, in and of itself.
  • They may or may not actually be learning the material the activity is supposed to teach.
  • They may or may not really be welcome in the classroom with their peers

For instance:

  • A group of third graders are being taught a lesson about sorting things into categories
  • The teacher draws a few giant Venn diagrams on big paper, with topic headings
  • The teacher writes a list of words on the board.
  • Students are told to draw those words, then tape them to the place in a Venn diagram category that they think it should go in
  • Then they’re given a list of words, and told to draw pictures of the words in the place in on the diagram that they think those things go
  • A disabled student’s aide gives them crayons and tells them to draw a couple of the pictures, then give them to the other kids to categorize
  • The typically-developing kids take the pictures and decide where to put them
  • Everyone is more or less happy with this. The student is participating and they are socially included.
  • But they’re not being taught the material about categorizing things. They’re just drawing pictures.

Access to content means:

  • The disabled student is taught the same material as other students
  • They’re given a way to engage with the material that they can understand
  • They learn the material, and develop their own thoughts on it
  • This doesn’t necessarily mean that they’re given a way to participate meaningfully in educational activities with peers
  • It also doesn’t necessarily mean that they are present or welcome

For instance:

  • A disabled student may attend a mainstream class, but be pulled out for one-to-one tutoring for most of their actual academic instruction.
  • If it’s good instruction, they’re getting access to the content.
  • But they’re not participating in educational activities with their peers.
  • They also may not really be welcomed in their mainstream class; people including the teacher may believe that they don’t have the right to be there (which is a factor that can lead to a lot of pull out instruction in and of itself).

This isn’t just about children, it’s true in every educational setting, including universities, grad school, and continuing education for adults.

Short version: Inclusion in school has many components. Three of them are being present and welcome, having a way to participate in educational activities with peers, and having access to the content being taught. All three of these things are important. Solving one problem doesn’t always solve the other two. It’s important to keep paying attention, and to work towards making sure students are welcome, that they are able to participate, and that they are learning the content being taught.

Some inclusion requires ongoing effort

Real Social Skills

Inclusion means a lot of different things. Sometimes inclusion can be passive, sometimes it needs setup, and sometimes it needs ongoing effort and/or expense.

Sometimes inclusion is passive. In that sense, it’s the opposite of active exclusion.

Some examples of passive inclusion:

  • Meeting in a building that happens to be accessible.
  • Not harassing disabled people with intrusive unwanted “help”
  • Seeing a conspicuously disabled adult alone in a public space without assuming it’s somehow an emergency or that they’ve escaped from needed supervision. (And therefore not bothering them.)
  • Raising no objection when people bring service dogs into a store or some other place
  • Not having an admissions policy that prohibits people with certain disabilities from enrolling in a school

Sometimes to get to passive inclusion, you have to spend some time changing one thing or setting it up. After the temporary period of active change, the inclusion becomes passive.

Some examples of inclusion that requires setup, but may not require ongoing active effort:

  • Building a wheelchair ramp
  • (Or renovating an unsafe ramp and bringing it up to code)
  • Hiring an architect knowledgable about accessibility when you’re building a new building
  • Making your book available on Bookshare 
  • Changing a restrictive admissions policy

Sometimes there is no passive way to include people. Sometimes inclusion means active ongoing effort or expense

A couple examples of active inclusion:

Captioning:

  • Some people need captioning to understand speech reliably. (Including many people who can hear).
  • Captioning takes time and human effort. Computers can’t do it; it has to be done by people.
  • Live captioning has to be done by experts (in CART or TypeWell), and it’s inherently expensive.
  • CART or TypeWell captioning events/classes in real time takes time, effort and expertise. It is inherently expensive.
  • High quality captioning also requires ongoing collaborative effort with the providers – people doing the captioning need to understand the words you’re saying in order to transcribe them accurately. So they need  to be provided with any acronyms, technical vocabulary, or culturally specific words you will be using.
  • If videos and events/classes aren’t captioned, a lot of people are passively excluded.
  • There’s no cheap or passive way to include them. Inclusion requires effort and resources.

Alternative format materials:

  • Some people can’t read standard print.
  • In order to access education or events involving print, they need materials in an accessible format
  • (Eg: electronic copies, braille, scans, large print, audio recordings, or something else, depending on the person)
  • Someone has to convert materials to an accessible format, every single time. This is inherently time consuming, and may in some cases require expertise or expensive equipment.
  • Every time materials aren’t converted, print disabled people are excluded.
  • There is no passive way to include print disabled people.
  • Inclusion of print disabled people is only possible when communities and schools and teachers are willing to put effort, time, and resources into inclusion.

There are many, many more examples of all three types of inclusion. When we talk about inclusion, the conversation needs to be about all three. Passive inclusion, setup inclusion, and active inclusion are all vitally important. People with disabilities are worthy of time and money.

Short version: Sometimes inclusion is easy and sometimes it’s hard. Sometimes inclusion means that you stop actively excluding people, and include them by letting them be. Sometimes inclusion means setting something an access feature initially, then including people by letting them be. Sometimes inclusion takes ongoing effort and expense. Sometimes inclusion means you stop passively excluding people, and start actively including them. All of these forms of inclusion are vitally important.

How disabled kids learn to be suspicious of optimistic teachers

Real Social Skills

This happens a lot in school:

  • A disabled kid goes to school.
  • A teacher is initially friendly and optimistic.
  • The teacher expects that their teaching will make the kid’s disability irrelevant.
  • Eventually it becomes clear that the kid’s disability is going to stay important.
  • Then the teacher gets frustrated, gives up, or stops being nice.
  • Sometimes this is overt and sometimes it’s subtle; it’s always hurtful.

A lot of kids go through this over and over during childhood. And, it often persists into adulthood and becomes a lifelong thing. It hurts. It does damage. And it means that people with disabilities are often suspicious of immediate kindly optimistic affect, and may take a long time to trust that you won’t reject them for being disabled.

If you’re teaching, be careful not to come in with the expectation that your teaching will erase disability or render it irrelevant. It won’t. Instead, start with the expectation that disability will matter and that you will be teaching students with disabilities. Disability acceptance is a key emotional skill for effective teaching. If you think around disability, it’s nearly impossible to apply any creativity to accommodating it. If you’re willing to face disability head on, it’s often possible to find good ways to adapt teaching so that a student can learn.

Access straw men

Real Social Skills

A lot of people are reluctant to change anything for the sake of accessibility, even if the change would be inexpensive and easy. Often, they resist even considering the possibility that there are changes they could make that would enable a broader range of people to participate.

Often, they set up access strawmen as a way to avoid negotiating access. 

Those conversations go like this:

  • The disabled person asks for a modification of some sort.
  • The resistant person ignores the actual request.
  • They instead describe something vaguely related that’s obviously unreasonable.
  • Then they insinuate that the disabled person asked them for the obviously unreasonable thing
  • They implore the disabled person to be more flexible and reasonable
  • The disabled person generally doesn’t get their needs met, and often ends up disoriented and feeling a lot of shame

An example:

  • Douglas: I can’t climb stairs. I need class to be held in a room on the first floor.
  • Roger: It sounds like what you really need is for all the buildings to be rebuilt for you. I can’t rebuild all the buildings; I have to focus on teaching.

Or sometimes:

  • Dawn: I can only read lips if people are looking at me. Can we talk about how to make class discussions work?
  • Robin: I can’t stop other students from talking to each other. Why don’t you take this opportunity to work on your listening skills?

When a person with a disability asks for an accommodation in school, work, a conference, or wherever, don’t set up a straw man to reject. Respond to the actual problem, and try to find a solution. Is there  a way to do the thing they’re asking for? If not, why not? Is there something else you *could* do that would work? Occasionally there is no good solution; more often, there is a way to make things work. When people in positions of responsibility are willing to look for access solutions and put effort into implementing them, a lot of things become possible.

“I don’t want him to feel different”

Real Social Skills

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.