“It’s not just about wheelchair access”

I think that in disability discourse, wheelchair users face some fairly unique pressure to pretend not to be disabled. At the same time, wheelchair users are treated as the ultimate symbol of disability. In combination, I think there is very little space in which wheelchair users are allowed to talk about their actual experiences and needs. (Even in disability rights space.)

To some extent, all disabled people face some version of this. The thing I think is somewhat unique to wheelchair users is pressure to be the model of successful accessibility. There’s a misconception that accessibility is basically a solved problem for wheelchair users, and that we need to expand that model to all disabled people. This goes alongside a related misconception that the purpose of accessibility is to make disability irrelevant.

Wheelchair users face intense pressure to enthusiastically pretend that wheelchairs and ramps erase disability. This goes alongside pressure to have exactly the kind of disability that fits the story that others want to tell. The story goes: “Wheelchair users can’t walk. Wheelchairs and lifts and ramps solve that problem. If we had ramps everywhere, wheelchair users wouldn’t be disabled anymore.” The reality is much more complicated.

People get very angry when wheelchair users contradict this story. Wheelchair users are often not allowed to have access needs that don’t fit the story — and they’re also not allowed to have *abilities* that don’t fit the story. This anger is so intense that it’s dangerous for wheelchair users to stand and walk in public places. People also get angry at wheelchair users when a ramp is too steep, when it’s blocked, or when they insist that the existence of a lift isn’t good enough, they need to have the key so that they can actually *use* it. There’s not much room in the wheelchair access success story for talking about these realities.

There’s also not very much room in this success story for talking about the realities of growing up with a mobility disability. Children still grow up manhandled by therapists and pressured to learn to walk at all costs. Children still go through repeated surgeries aimed at fixing them. Children still get taught to allow adults to hurt them and touch them in ways that would be regarded as abuse if they were typically developing. Children are still pervasively excluded from educational and recreation activities and expected to bear it with a smile. Ramps and wheelchairs didn’t fix that, and accessibility advocacy should not make those things unspeakable.

The success story has even less room for talking about pleasure. Harriet McBryde Johnson said it better than I could, so I’m going to quote her:

“We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures. …

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body—imperfect, impermanent, falling apart—is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.”

McBryde Johnson, Harriet. Too Late to Die Young: Nearly True Tales from a Life (p. 255). Henry Holt and Co.. Kindle Edition.

Treating wheelchair users as a symbol of disability successfully erased has the effect of silencing wheelchair users. I think that a lot of us have been complicit in this silencing, and that we need to address this in disability culture. Partly for the sake of better solidarity with wheelchair users; partly because the silencing is hurting all of us.

I think that all disabled people face pressure to see ourselves as characters in a story about accessibility. Sometimes we’re expected to write the story. Sometimes we’re seen as characters in a story someone else is writing. Sometimes we’re supposed to believe that the story has already been written, and that all we have to do is get people to read the book.

I think that wheelchair users face particularly intense pressure to pretend that the story has already been written and has a satisfying ending. That’s not something any of us should envy. It’s not privilege. It’s silencing. And I think we need a lot less silence and a lot more solidarity. It doesn’t have to be this way, and it isn’t always this way. When we have space for honesty about the realities of disability, our communities are a lot stronger.

Wheelchair users are not a collective accessibility success story. Wheelchair users are people. None of us are stories. We’re all people. No amount of accessibility is going to make our bodies and brains irrelevant. Disability rights advocacy shouldn’t be about erasing difference. The point is not sameness; it’s equality. Accessibility is about building a world that treats us all as fully human, differences and all.

“Have fun” should not be a rule

A lot of summer camps, youth groups, and other activities have a “have fun” rule.

The implied message is usually: This is a fun place. If you’re not having fun, you’re doing something wrong. Fix your attitude and have fun doing the fun activities.

Sometimes “have fun” rules are explicit. Sometimes they’re more implicit, and come in forms like: making people sing a song every day about how much they love camp, announcements about “we’re all having so much fun!”, or whatever else.

The problem with this is: nothing is fun for everyone. People have the right to feel how they feel about things. It’s really degrading to tell an unhappy person that they should just feel some other way.

“Have fun” rules are especially problematic for many disabled people.

Because — most programs are not fully accessible, even when they think they are. Most of us expect to encounter activities that are inaccessible in ways that make participation impossible — or that make them no fun.

And often, initially fun activities are ruined when someone treats you in a degrading way or says something awful about disability.

Being left out when everyone else is having fun is bad enough. When there’s a “have fun” rule, it’s even worse. Not only are you hurt by the exclusion, you’re told that you’re violating the rules by being hurt and unhappy.

“Have fun” rules make it really hard to solve these problems, because they make it risky to admit that you’re not having a good time.

“Have fun” rules make problems harder to solve, even when the problem has a straightforward solution. All the more so when the problem is complicated. (Or only has a partial solution.)

“Have fun” rules actually make things a lot less fun.

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.

Short version: 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.

“Can everybody hear me?”

Presenters often open by asking “Can everybody hear me?” or “Can everyone hear me without the microphone?”

This isn’t a very effective way to find out if everyone can hear you. It feels like asking, but it isn’t really — because it doesn’t usually give people the opportunity to say no.

If you want to know if everyone can hear you, this way of asking works better:

  • First, ask if everyone can hear you. This will get the attention of the people who can.
  • Next, ask everyone “Can the person next to you hear me?”
  • Wait 7 seconds for people to ask each other
  • Next, say, “Raise your hand if you or someone near you needs me to talk louder or use the microphone.”
  • Wait at least 7 seconds before moving on. 
  • (7 seconds feels really long as a presenter. It helps to literally count silently to yourself).

Asking this way solves two problems:

It makes it easier for people to hear the question:

  • If someone can’t hear you well, they may not hear “Can everybody hear me?”
  • This can give you the misleading impression that everyone can hear you.
  • When you ask, “Can everybody hear me?” the people who can, tend to respond “yes” immediately
  • The people who *can’t* hear you well, often don’t hear the question.
  • Or they may not understand what you’ve said until you’ve already moved on.
  • But they probably *can* hear people who are close to them talking to them directly.
  • Asking “can the person next to you hear me?” makes it more likely that people who can’t hear you will understand the question.

It makes it easier for people to respond to the question:

  • Saying “Can everybody hear me?” or “Can everyone hear me without the microphone?” *feels* like asking, but often it really isn’t.
  • The problem is that asking that way doesn’t give people an obvious socially acceptable way to respond.
  • So in order for people to say “I can’t hear you” or “I need you to use the microphone”, they have to interrupt you.
  • Which feels like a conflict, and most people don’t want to go into a presentation and immediately have a conflict with the presenter.
  • It also makes them have to identify themselves as having an inconvenient impairment in front of the whole group.
  • That’s uncomfortable on a number of levels, and may be actively frightening.
  • Not everyone is going to be willing or able to interrupt you or take risks.
  • Even when people are willing, it’s still anxiety provoking in a way that’s likely to make your presentation less comfortable and effective
  • Giving people a clear way to respond gets you better information, and helps you to build a better rapport with your audience
  • (And doing it in the specific way I suggest makes it possible for people to let you know they can’t hear you without having to interrupt you, identify themselves to you, or identify themselves to the whole group.)

Short version: If you’re giving a presentation, asking “Can everyone hear me?” probably won’t result in people who can’t hear you telling you so. Scroll up for more detailed information about a more effective approach and why it works better.

Braille is not a language

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.

Rebuilding what was built incorrectly

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.

Some inclusion requires ongoing effort

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.

Access straw men

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.

People with disabilities are worthy of money and effort

In the part of special education community that promotes inclusive education, I often hear advocates say things like “inclusion doesn’t have to be hard,” “inclusion doesn’t have to be expensive,” and “inclusion doesn’t require special skills.”

This isn’t really true, unless we exclude a lot of people from “inclusion”. Some access needs are easy to meet; many are not. We can bring some people in without too much trouble. In order to commit to full inclusion, we’re going to have to be willing to spend money, acquire expertise, do hard things, and make changes.

For instance, people who can’t rely on speech as their primary means of communication need support learning to communicate. This is inherently expensive:

  • They usually need expensive devices
  • (The cheapest good option is an iPad with a $200 app; some people need dedicated devices that cost upwards of $10,000.)
  • They also usually need therapy
  • Having a communication device doesn’t solve all of someone’s problems; they also have to learn how to use it
  • (And they usually need help learning how)
  • Or they need something like RPM, which is low-tech but requires twice-daily 1:1 lessons which use scripts that generally have to be prepared in advance specifically for that student.
  • If they are in school, they need teachers who know how to teach them (which generally means that experts have to teach their teachers how.)
  • AAC communication is slower, and can be hard to interpret
  • Inclusion doesn’t happen automatically; teachers have to learn how to make sure AAC users are able to participate and be heard in class
  • (Eg: If someone isn’t using complete sentences yet, it can be hard to know what they mean. You have to be willing and able to do the work of helping them to clarify).
  • (And: if someone responds slowly, you have to proactively make sure they get a chance to express their thoughts in class discussions)
  • All of this requires money, expertise, effort, and willingness to change
  • If we’re only willing to consider cheap options, people who need communication support are left behind

Another example: People need to be able to get into the building

  • Many buildings were built incorrectly
  • They may have large flights of stairs at all entrances
  • They may have many floors that can only be reached by stairs
  • They may not have any accessible bathrooms
  • The bathrooms may all be too small to enter in a wheelchair (which means there’s no way to fix them without moving walls)
  • All of the doors may be big and heavy
  • Often, there’s no cheap way to fix this
  • There may be inexpensive starting places; we can’t stop there
  • If we care about including people with mobility disabilities, we have to be willing to spend money to fix buildings
  • We have to hire architects who have expertise in accessibility
  • We have to make sure that people with mobility disabilities are part of the conversation, even if no one with a mobility disability has expressed interest in accessing the building recently
  • We have to be willing to make changes that make the building look different, in ways that may mean changing or destroying things that longtime users of the building are emotionally attached to.

We can start with the low hanging fruit; we should not pretend that all fruit is low-hanging. A lot of access needs are inherently expensive. There are a lot of needs that no one even knows how to meet yet; the expertise we need does not yet exist. If we want to commit to full inclusion of children with disabilities in schools; if we want to fully include adults in all aspects of society, we need to be in it for the long haul.

Short version: In order to stop excluding people with disabilities, we’re going to have to spend money. We’re going to have to bring in expertise and develop expertise. We’re going to have to do difficult things. We’re going to have to make changes. We’re going to have to start seeing this as normal. People with disabilities are worthy of money and effort.

Safety vs making people feel safe

There are all kinds of affective things and cognitive tricks you can learn that make it more likely that people will trust you and feel safe.

It is possible to get really, really good at that without actually learning how to be trustworthy. You can be really, really good at making people feel safe, and still be a danger to people who trust you.

Sometimes it’s not a good idea to focusing on trying to make people feel safe.

Often, it’s much better to focus on learning how to be trustworthy. Two major components of being trustworthy are paying close attention to practical safety; and listening to the people whose safety might be impacted.

For example:

If you want to know what’s dangerous, it’s important to seek out the perspectives of people you’re trying to create safety for. This isn’t something you can do completely on your own.

Part of this is seeking out writing about danger and safety by members of the affected group, or advocacy organizations run by members of the affected group. Another part of this is listening to the individual people who you are actually interacting with about their needs.

It’s important to communicate effectively about the things you are doing that might make trusting you a good idea.

It’s important to talk about safety improvements to make sure people know about them. (Eg: if you fixed a dangerous ramp, people need to know that it has been fixed). It’s also important to communicate your willingness to listen to people about their needs and fix things that are endangering them. It has to be true, and you have to do things to communicate that it’s true. It does not go without saying; willingness to listen and address safety issues in practical terms is actually fairly uncommon.

If you focus on practical safety through proactive research and listening to affected members of your community, you can get very far in building safe and welcoming community even if people do not feel safe.

Some people who do not feel safe still care very much about being there, and are willing to take risks in order to participate. It’s important to honor and accept that.

Some people aren’t ever going to feel safe. (And some of them will be right.) It’s important to accept them as they are, and not make feeling safe a prerequisite for participating.

Short version: “Making people feel safe” is often the wrong approach. Focusing on being safe often matters a lot more. Some people don’t believe that they are safe, and are willing to take risks in order to participate. They should be allowed to have that perception. They should not be pressured into feeling safe as a prerequisite for participation.