Tag: inclusion

“Have fun” should not be a rule

Real Social Skills

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.

We’re just like everyone else — and we’re also different

Real Social Skills

In some ways, people with disabilities are just like everyone else. In some ways, we are very different. Both sides of that matter. Bad things happen when either is overlooked.

We are different from everyone else in that our bodies work differently. Most people have bodies that can do certain things. Our bodies can’t do all of the things that most other people can do. That matters. Being blind means something. Being d/Deaf means something. Having an intellectual disability means something. Being autistic means something. Having a mobility disability means something. Fatigue means something. Depression means something. The way we move, communicate, think, and perceive the world matters. Thinking about the differences created by our disabilities allows us to think about how to live with them — and live well with them. These differences do not need to be cause for alarm — we’re just people, and we’re part of the world, just like everyone else.

We are just like everyone else in that we are human beings. Our bodies are important. We experience pleasure. We have feelings. When people hurt us, we feel it, and it matters. Injustices against us are important, and we have the right to resist. We learn for our whole lives. If we survive to the age of adulthood, we become adults. When we wrong people, it matters. We are able to love. We can reciprocate relationships, consideration, and efforts. And any number of other things. Basically, we are people.

We are different from nondisabled people in that we can’t assume that we will be treated as equals in any context. Few, if any, spaces are designed with the assumption that we will be present, or that our presence is important. A school with a wonderful reputation for supportive friendliness may be aggressively, or subtly, hostile to students with disabilities. A movie theater may not bother to unlock the accessible doors, or may not have accessible doors at all. Airline policies may make travel impossible. People who say they are our friends may see us as charity projects, possibly with the encouragement of teachers or therapists. Or any number of other things. The daily toll of unmet access needs adds up, especially when the barriers are unnecessary, especially when they could be easily removed if anyone cared to do so.

We often can’t even assume that our humanity will be recognized.  In our culture, we are surrounded by people who think that disability makes us less than human — sometimes even within disability community. Sometimes it’s subtle, and sometimes it’s blatant. Many of us grew up subjected to therapy that would have raised outcry if it had been done to a typically developing child. Any number of books and movies raise the question of whether death is better than disability.

Conversations about disabled people often do not include us, and often do not even recognize that we have perspectives of our own. When disabled people are murdered by caregivers, the murderers often get more sympathy than the victims. Ethicists with tenure debate whether disabled people ought to be allowed to be born, whether medical treatment for people with disabilities is a good use of resources, and whether we’re really people after all. And so on. The dehumanization adds up, too.  Even when we are treated well, we live with the knowledge that people just like us are not.

We are fully human, and it is wrong to treat us as subhuman. In that sense, and many others, we are just like everyone else. We are also different. We are physically and cognitively different from other people, and those differences are important. We are also treated very differently from others, and that experience is important too. All of these things shape who we are, and the skills we need to live well. Glossing over disability does not serve us. We can get a lot further if we are matter of fact about all of this, and face these realities honestly.

Short version: People with disabilities are just like everyone else in some ways. We are different from everyone else in some ways. We are the same in that we are people. We are different in that our bodies work differently — and in that others treat us as subhuman. All of these things matter.

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.

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.

People with disabilities are worthy of money and effort

Real Social Skills

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.

A way people with disabilities are often wrongly percieved as angry

Real Social Skills

Sometimes disabled people are wrong perceived as angry or hostile when they move like disabled people. It works something like this:

  • The most efficient way to do things is often not the socially accepted way to do things
  • People with disabilities often have to do things in an efficient way to be able to do them
  • In order to be perceived as calm and polite, people are often expected to move in a slow, careful way without making sudden or loud motions
  • That’s easy for most people without disabilities, and can be difficult or impossible for people with disabilities
  • Sometimes people with disabilities don’t have the motor coordination or strength to move in expected ways. Sometimes pain or illness makes them too exhausted to have the energy to move in expected ways. Sometimes, they have to move efficiently to be able to move at all.
  • People with disabilities who have to move in loud, sudden, forceful, or jerky ways are often wrongfully perceived as expressing anger, frustration, or aggression.
  • When people make loud, jerky, or sudden motions, they tend to be perceived as rude, angry, or aggressive
  • People with disabilities don’t always have the coordination to make the movements in expected ways
  • Sometimes, they have to be efficient in order to do the thing.
  • This often gets perceived as angry when it isn’t
  • This can lead to people with disabilities who are just trying to live their lives being perceived as hostile and excluded
  • When a person with a disability is moving in a jerky, sudden, or loud way, it’s important to consider the possibility that it’s disability-related rather than angry

Some concrete examples:

Dropping things:

  • In most social contexts, it’s socially expected that people who need things to be on the ground put them there without making a sudden noise
  • This generally means using your arms to slowly lower the thing to the ground
  • People with disabilities often do not have the strength or motor coordination needed to lower things this way
  • Sometimes, people who can’t rely on muscles to lower things need to drop them and rely on gravity
  • (And some people have to rely on gravity some of the time, eg: when they’re tired, at the end of a long day, when they’re in a particularly draining environment, when they’ve already had to lift and drop the thing several times that day.)
  • Gravity only goes one speed, and dropped objects tend to make noise
  • Dropping a heavy object rather than lowering it slowly is usually perceived as a sign of anger (and for people without disabilities, it’s generally intended as one).
  • People with disabilities who drop things are often not intending it as an expression of anger.
  • Often, they drop things because they need them to be on the ground and have no other realistic way of getting them there.
  • If a person with a disability is dropping heavy things rather than lowering them, it’s important not to automatically assume that they are doing this out of a show of emotions
  • Consider seriously the possibility that they’re dropping things because they need to lower them, and due to disability are not able to do so in the socially expected way.

Another example: Plugging things in:

  • The socially expected way to plug things in is to slowly push the plug into the outlet using a steady pressure
  • That requires a particular kind of strength and muscle control
  • Some people with disabilities can’t do that
  • Some people with disabilities have to rely on momentum.
  • Relying on momentum involves one sudden forceful movement.
  • That can look like punching, and can be perceived as excessive force
  • Most people without disabilities only plug things in with that kind of force when they are angry or frustrated
  • People with disabilities often plug things in that way because it’s the only way they can do it
  • If a person with a disability uses a lot of force to plug things in, don’t assume it’s a display of emotion.
  • Consider seriously the possibility that they’re doing it that way because that’s how their body works

In general:

  • Some socially expected movements are complicated and difficult
  • Sometimes people with disabilities can’t do it in the polite way
  • Sometimes, we have to do it in a way that’s more efficient
  • That’s often perceived as rude, inconsiderate, or threatening, when it’s really just limited ability to move in expected ways
  • No amount of social skills training or knowledge of socially expected behavior will make it physically possible to move in all expected ways
  • This can result in people with disabilities being perceived as angry or displaying rage when all they’re doing is moving
  • It’s important not to automatically assume that people with disabilities who move oddly are doing it to display anger. It might just be that that’s the only reasonable way for them to do something.
  • If you understand this, you’ll be much more able to relate to people with disabilities and include people
  • (People with disabilities, like everyone else, sometimes display anger and frustration in physical ways. But they are routinely wrongly perceived as doing so. It is possible, and important, to learn to tell the difference).

Short version: People with disabilities are often perceived as displaying rage or aggression when they’re just moving. This is because socially expected ways of moving are often very inefficient in ways that aren’t too difficult for most nondisabled people, but can be difficult or impossible for people with disabilities. It’s important to learn to tell the difference between people with disabilities moving efficiently and people with disabilities displaying anger. Scroll up for details and examples.