Tag: disability

Believing in ourselves as disabled people

Real Social Skills

As disabled people, it can be very hard to learn to believe in ourselves. We’re often taught not to.

We’re told over and over “believe in yourself, and you can do anything!” and that if we work hard, we can overcome disability. That sounds positive, but it actually teaches us that we’re not worth believing in as the people we really are.

In the name of believing in ourselves, we’re told to ignore key facts about ourselves. We’re taught that believing in ourselves means that if we ignore disability as hard as possible, it will go away and we’ll be ok.

But ignoring reality doesn’t change it. No matter how we feel, no matter what we believe, our bodies exist and matter. Our limitations stay important.

We need to get real, and we need to believe in ourselves for real. We have real bodies. We have real minds. We have real limitations. We are real people, worthwhile as we really are.

Believing in ourselves means self awareness and self acceptance, including of our disabilities. We can believe in ourselves enough to stop fighting with our bodies and brains, and to start working with them rather than against them.

We can understand our limitations, and face them without shame. We can accommodate our disabilities. We can take our strengths seriously, and respect our capabilities in an honest way. We can enjoy things and have good lives. We can figure out for ourselves which things to do, and how to do them.

We can’t overcome disability — and we don’t need to. We are worth believing in as the people we really are.

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.

When professionals assume that parents of disabled kids see ghosts

Real Social Skills

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

  • Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting.
  • They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible.
  • At some point, the parents are forced to confront their child’s disability.
  • They lose their fantasy of the child they expected, and this is emotionally devastating.
  • In order to move on, they have to mourn the loss of the child they expected and the life they expected.
  • Parents need emotional validation and help working through that.
  • All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

  • Children want adults in their lives to see them, approve of them, and love them.
  • When parents are seeing ghosts, they’re not seeing their real child.
  • Children can tell when adults in their lives are looking past them. It hurts.
  • When parents are mourning for the child they expected, they are disappointed by the child they actually have.
  • Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
  • And it especially hurts when the child has no control over the things that are disappointing their parents.
  • While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
  • That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

  • There is often a tendency to pretend that kids don’t know.
  • But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
  • Kids need people in their lives who see them, and not ghosts.
  • Kids need people in their lives who can accept and value them as they are.
  • Sometimes that can’t be their parents. Or can’t (yet) be their parents.
  • But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
  • If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
  • Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters.
  • If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

  • The professional narrative about grief and mourning does not accurately describe all parents.
  • Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
  • Not all of these feelings are negative.
  • Even when parents have negative feelings, they’re not always grief.
  • Sometimes parents feel overwhelmed and confused about how to support their child.
  • (Or worried about how to afford the things their child needs).
  • (Or repulsed by things professionals are telling them to do to their children as therapy.)
  • Sometimes parents feel ashamed about not having noticed sooner.
  • Sometimes parents feel concerned that they may have caused their child’s disability.
  • Or any number of things.
  • Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

  • The grief and mourning narrative is strong and pervasive.
  • Parents are often expected to describe everything they’re feeling as grief.
  • Parents are often not given any support in working through the other feelings and doubts they are having.
  • This can result in parents being pushed into a mourning process that wasn’t actually necessary for them.
  • It is very damaging to both parents and children when this happens.
  • It is not good to grieve for the living. When it’s avoidable, it should be avoided.
  • It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily.
  • (Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Short version: There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

Ability is complicated.

Real Social Skills

Most people have some ability to improve some of their physical or cognitive skills. The limits on this are different for different people. Sometimes trying hard over a long period of time makes things possible. Sometimes it doesn’t.

Sometimes all it takes to be able to do something is to be willing. For instance:

  • People who have unusual speech (eg, a CP accent) are often ignored.
  • Most people who aren’t listening, could decide to listen.
  • Often, willingness to slow down and listen is all it takes.
  • (Not everyone can do this — there’s no shame in being unable. Sometimes disability is like that. The problem is that a lot of people who *could* understand relatively easily, or could learn how, don’t bother to listen)

Sometimes gaining the ability to do something takes significant effort over a sustained period of time:

  • For instance, most people could not decide to wake up tomorrow and run a marathon.
  • No matter how willing or determined they were, they would fail, because it’s not an ability you can gain overnight.
  • Many people can get the ability to run a marathon, by training over time.
  • Most people who can run at all can get better at running, up to a point, whether or not they ever gain the ability to run a marathon.
  • Getting better at running takes a lot of disciplined effort over time.
  • People don’t just decide to run fast, they practice and keep pushing themselves until they get better at it.

Another aspect of running ability:

  • There is a limit, and the limit is different for everyone. Discipline and effort only take you so far.
  • Very few people will ever be able to run as well as olympic runners — no matter how much work they put into trying.
  • Bodies have absolutel limitations, and they can’t be overcome by sheer force of will.

On the other side of things, flying:

  • No one can flap their arms and fly, because it is physically impossible
  • No amount of determination or disciplined effort will make it possible for a human being to fly by flapping their arms.

It’s not always obvious which category something falls into, even for nondisabled people:

  • Sometimes limits are predictable.
  • Sometimes you can’t tell until you try.
  • Sometimes things that feel impossible turn out to actually be easy once you try.
  • And vice versa: sometimes things that feel intuitively like they should be easy turn out to be impossible.
  • Sometimes things that feel impossible at first become possible with sustained effort over time.
  • Sometimes they stay impossible.
  • Sometimes the effort they take turns out not to be worth it.
  • Ability is complicated and can be unpredictable, for everyone.

It’s often even more confusing for disabled people, for a number of reasons:

  • For many disabled people, walking is like flying — flat out physically impossible, not happening.
  • For some people, it’s like running a marathon — possible, but may or may not be worth the amount of time and effort it requires.
  • For some people, it’s similar to a failed attempt to become an olympic athlete — some progress towards the goal is possible; but it’s still not achievable.
  • It’s not always at all obvious which category something is in.
  • And that’s true of a lot of skills, in a lot of disability categories. (Including cognitive skills.)

In addition, honest discussion of what you can and can’t do is often taboo for disabled people. We’re often expected to say that we’re just like everyone else, even when we’re obviously not. We’re often expected to believe that we can do anything if we try hard enough, even when it’s obviously not true. We’re often prevented from trying anything hard that we might fail at — in a misguided attempt to spare us frustration and the pain of noticing our limitations. All of this can make self-assessment even harder.

Ability is complicated. Most people can improve some of their physical, emotional, or cognitive skills. Willingness makes some things possible. Sustained effort over time makes other things possible. Some things stay impossible no matter how hard you try. Sometimes it is clear which category something falls into; often it is not.

This is even more complicated for people with disabilities. Research and rules of thumb developed by experience with nondisabled people can give misleading results. No one can do everything, and that’s ok. Most people make mistakes about what they can and can’t do, and that’s ok too.

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.

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.