Tag: ableism

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.

When fear of wheelchairs is really fear of institutionalization

Real Social Skills

Journalists sometimes inappropriately describe wheelchair users as “wheelchair-bound”. This is offensive, because it’s misleadingly negative. Wheelchairs aren’t a restriction, they’re a liberation. They make it possible to go places and do things, and to move through the world without needing someone else’s permission. Wheelchairs are absolutely amazing and should be viewed as positive.

Except — in institutions, wheelchairs are routinely used as restraints. (And sometimes instruments of humiliation and torture). And I think that is probably a factor in why many people find wheelchairs frightening.

Walk through the hall of any nursing home, and you’ll see people parked in clunky manual wheelchairs that they aren’t able to self-propel. (And which don’t fit properly, don’t have good positioning support, and can be very painful to sit in for extended periods). Those people aren’t being liberated. Those people are very literally wheelchair bound. Often over their obvious protests.

People in institutions who try to get out of wheelchairs tend to be strapped in with seat belts they can’t undo. People who persist in resisting that tend to be medicated until they can’t. People who live in institutions also tend to have some times in their lives where things look pretty good, where it looks like they’re being well cared for and that they’re happy and enjoying themselves. Those good times aren’t representative of what it’s like to live in a institution. On some level, everyone knows this.

I think sometimes, when people are afraid of wheelchairs, what they’re really afraid of is institutions. They’re afraid that needing a wheelchair means that those kinds of things will happen to you. They see people in wheelchairs having a good time and out and about in apparent freedom, and they viscerally feel like it’s an illusion, like it’s no more representative of reality than the times you see institutionalized people having fun and looking free.

I think that in order to teach people that they’re wrong about wheelchairs, we have to teach them that they’re wrong about institutions. Losing mobility doesn’t have to mean living locked up in a nursing home. Neither does losing speech or words or cognitive functioning. People with severe physical and cognitive disabilities live in their homes in the community.

There is no disability that means someone needs to be institutionalized and treated the way people are treated in nursing homes. No one should be stuck in an institution. Institutions aren’t inevitable; they are always a social failure. Institutions are bad; wheelchairs are good, and wheelchair users can live in their homes as free people and have good lives.

Short version: Wheelchairs are good, but a lot of people are viscerally horrified by them. I think this is in part because people associate wheelchairs with institutionalization. They see horrible things happening to wheelchair users in institutions, and think that’s what it means to be a wheelchair user. If we want people to understand that wheelchairs are good, we need to teach them that no one needs to live in an institution.

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.

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.

Ableist hostility disguised as friendliness

Real Social Skills

Some people relate to people with disabilities in a dangerous and confusing way. They see themselves as helpers, and at first they seem to really like the person. Then the helper suddenly become aggressively hostile, and angry about the disabled person’s limitations or personality (even though they have not changed in any significant way since they started spending time together). Often, this is because the helper expected their wonderful attention to erase all of the person’s limitations, and they get angry when it doesn’t.

The logic works something like this:

  • The helper thinks that they’re looking past the disability and seeing the “real person” underneath.
  • They expect that their kindness  will allow the “real person” to emerge from the shell of disability.
  • They really like “real person” they think they are seeing, and they’re excited about their future plans for when that person emerges.
  • But the “real person” is actually figment of their imagination.

The disabled person is already real:

  • The helper doesn’t like this already-real disabled person very much
  • The helper ignores most of what the already-real person actually says, does, thinks, and feels.
  • They’re looking past the already-real person, and seeing the ghost of someone they’d like better.

This ends poorly:

  • The already-real person never turns into the ghost the helper is imagining
  • Disability stays important; it doesn’t go away when a helper tries to imagine it out of existence
  • Neither do all of the things the already-real disabled person thinks, feels, believes, and decides
  • They are who they are; the helper’s wishful thinking doesn’t turn them into someone else
  • The helper eventually notices that the already-real person isn’t becoming the ghost that they’ve been imagining
  • When the helper stop imagining the ghost, they notice that the already-real person is constantly doing, saying, feeling, believing, and deciding things that the helper hates
  • Then the helper gets furious and becomes openly hostile

The helper has actually been hostile to the disabled person the whole time

  • They never wanted to spend time around the already-real disabled person; they wanted someone else
  • (They probably didn’t realize this)
  • At first, they tried to make the already-real disabled person go away by imagining that they were someone else
  • (And by being kind to that imaginary person)
  • When they stop believing in the imaginary person, they become openly hostile to the real person

Short version: Sometimes ableist hostility doesn’t look like hostility at first. Sometimes people who are unable or unwilling to respect disabled people seem friendly at first. They try to look past disability, and they interact with an imaginary nondisabled person instead of the real disabled person. They’re kind to the person they’re imagining, even though they find the real person completely unacceptable. Eventually they notice the real person and become openly hostile. The disabled person’s behavior has not changed; the ableist’s perception of it has. When someone does this to you, it can be very confusing — you were open about your disability from the beginning, and it seemed like they were ok with that, until they suddenly weren’t. If this has happened to you, you are not alone.

“Choosing to be disabled”

Real Social Skills

Ableists often believe that “choosing to be disabled” is a major social problem. They aggressively believe that most disabilities aren’t real, and that people could stop being disabled if they’d just make better choices. They think most disabled people are fakers who just stay disabled out of laziness.

They may see accessibility and accommodations as “enabling”, and try to get them taken away. Or, they may try to force people into treatment (whether or not safe and effective treatment actually exists.) Or they may just be mean and hostile towards disabled people they encounter. Or any number of other things. This hurts all disabled people badly.

People with disabilities often feel like they have to prove that they are not faking, and that their disability isn’t a choice. This can lead us to worry a lot about whether we’re somehow doing this on purpose. In this state of mind, it’s really easy to find things that feel like evidence that we’re fake.

Disability usually involves tradeoffs. We can’t choose to have all of the same abilities as nondisabled people, but we often can make some choices about which abilities to prioritize. This can superficially look like “choosing to be disabled” if you don’t understand how disability works.
For instance:

Medications:

  • All medications have side effects
  • Managing the condition and the side effects can involve complicated tradeoffs
  • There is usually more than one option
  • It can often be a choice of what abilities you prioritize most, and which impairments are most tolerable
  • You may be able to choose to make any particular impairment go away
  • That doesn’t mean you could choose to be unimpaired
  • Ableists will think you are faking no matter which choices you make. They are wrong.

Mobility equipment:

  • People with mobility impairments often have more than one option, and there can be complex tradeoffs.
  • Eg, which is more important to someone?
  • Being able to go further without fatigue (in a power chair) or being able to ride in a regular car (with a collapsable wheelchair)?
  • Being able to travel a mile on the sidewalk (in a wheelchair), or being able to use all of the subway stops (by walking)?
  • Being able to get into inaccessible buildings (by walking), or being able to go out without being in pain (in a wheelchair)?
  • Retaining the ability to walk (by spending a lot of time doing physical therapy) or being able to take a full course load in college (by spending that time on studying and losing the ability to walk)?
  • No matter which choice you make, ableists who don’t understand disability will see it as “choosing to be disabled”. They are wrong.

There are any number of other examples, for every type of disability. This affects every kind of disability, including physical, sensory, cognitive, psychiatric, chronic illness, and the categories I forgot to mention.

Short version: We all have to make choices about how to manage our disabilities, and there are often complicated tradeoffs. No matter which choices we make, ableists will think we’re making the wrong ones. No matter which choices we make, ableists will think that we are faking.

In the face of this kind of hostility, it is easy to start doubting ourselves and believing that we’re fake and terrible. It helps to remember that the ableists don’t know what they are talking about (even if they are disabled themselves). Making choices about how to manage disability is just part of life. The ableists are not experts in how you should be living you life; they are wrong and they are mean.

Open letter to disability professionals

Real Social Skills

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions. 

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are. 

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of.  We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals – please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

Drugs, crutches, and other tools

Real Social Skills

Psychiatric medication is highly stigmatized, and so is physical disability. One way that this comes out is that people say pejoratively, “medication is a crutch.”

Why is “crutch” an insult? What do people think is so terrible about using crutches?

I think that it’s a kind of ableism where people don’t understand that disability actually exists. They believe that anyone can do anything, if they put their mind to it and work hard. When people with disabilities can’t do something others can, they assume that we are just being lazy. They assume that about moving, they assume that about moving, and they assume that about thinking.

They believe that if they push us to try harder, then we will learn to stop being disabled. They think that if we stay disabled; it’s because someone’s giving us permission to be lazy. They’re constantly on guard against the possibility of a disabled person getting away with something.

They are aggressively hostile towards any visible adaptive strategy. When they see crutches or medications or whatever, they are terrified that we are getting permission to be lazy.

Sometimes, they think it’s ok for us to use these things, but only if we fall into a very narrow category of people think think have real disabilities. For instance, they might think wheelchairs are ok for paralyzed people, but have no respect for wheelchair users who can walk. Or they might think it’s ok to use medication if you’re trying to stop, but have contempt for people who need medication long-term and have no plans to stop taking it. Or whatever other combination of things. People have a lot of really weird ideas about disability, and just about any prejudice you can imagine exists.

Crutches are a tool. There are other mobility tools. Medications are several different tools. There are other mental health tools. They all have advantages and disadvantages, and everyone has to figure out what works best for them. Every strategy is stigmatized, because ableists expect us to think our way out of being disabled. But crutches aren’t actually bad things, whether they’re literal or figurative. We all find the ones we need.

Short version: People with disabilities need adaptive strategies to work around disability-related limitations. Ableists think that we’re just being lazy when we use adaptations such as mobility aids or psychiatric medication. They often pejoratively say “you’re just using that as a crutch,” as though using adaptive equipment is the worst thing you could possibly do. But actually, there’s nothing wrong with crutches. We all find the ones we need, and that’s a good thing.

In defense of nonverbal communication

Real Social Skills

Lately, I’ve been seeing a lot of posts giving parents of nonverbal kids the advice “pretend not to understand your child so that they will be forced to use AAC and communicate in words”.

I think this is a mistake.

I think that if you want to teach someone to communicate, it has to be built on a foundation of listening to them. And that means listening to all of their communication, not just communication that happens in words.

I also think that all of someone’s communication methods are important, and that they all need to be respected. There isn’t one true method of communication. They all matter.

Communicating through body language is useful for all people. People who can talk are allowed to communicate through body language, and actively encouraged to develop the skill of doing so. It’s expected that, when I smile, point to things, frown, or whatever, that people will listen to what I’m communicating. Nonspeaking people deserve the same respect.

People say “communication shouldn’t wait for speech”. I agree with that. And I think it shouldn’t wait for words either. Because words may never come. If you wait for someone to reliably use words to listen to them, you may end up never listening to them. And everyone deserves to be heard.

And even if they will eventually use words and sentences, the things they’re saying *now* still matter. And listening to them is still important.

Presuming competence shouldn’t mean assuming that with the right support, people will eventually base most of their communication on words. Presuming competence should mean assuming that, with the right support, people will choose the means of communication that work best for them. Which may be speech. Or a voice output communication device. Or sign. Or body language. Or pointing to a letter board. Or speech. Or any number of other things. Or any number of combinations of things.

Short version: Everyone deserves to be listened to. If you want to support someone in learning to communicate, it has to be built on a foundation of listening to them — in whatever form their communication takes. Ignoring one form of communication to force them to learn a different form is not respectful, and probably won’t help.