Tag: cross disability

“It’s not just about wheelchair access”

Real Social Skills

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.

Electronic books can make reading possible for people with executive dysfunction

Real Social Skills

Electronic books can be an important disability accommodation for a lot of people, including some people with normal vision. If you’re having a lot of trouble reading, or not reading as much as you’d like to, it might help to use electronic books.

There are a lot of steps involved in reading a print book. Some of these steps can be difficult or impossible for people with impaired executive function, autistic inertia, fatigue, chronic pain, or other conditions. Some difficult steps can be eliminated with electronic books.

In order to start reading a print book, you have to be able to do all of these things:

  • Have the book in a place where it’s available to you when you have time to read.
  • (Which can involve remembering to bring with you somewhere.)
  • (And keeping track of the book and not losing it.)
  • Decide to stop what you’re doing and do a different kind of task.
  • Figure out where the book is.
  • Go get the book.
  • Avoid getting distracted by other things as you find the book or get the book.
  • Figure out where you are in the book.
  • (Which can involve things like remembering the place.)
  • (Or using a bookmark, which comes with its own multi-step challenges like remembering that bookmarks exist and having one available.)
  • Open the book to the right page.
  • Avoid getting distracted by other parts of the book.
  • Get into a position in which you can read, which you can also sustain long enough to read for a significant among of time.
  • Actually start reading the book.
  • If you want to take notes or highlight, you also have to gather all your note-taking tools.
  • And not get distracted and forget what you’re doing.
  • And not forget where you put the book in the process.
  • That’s a lot of steps, any one of which can sometimes be difficult or impossible.
  • Using electronic copies can eliminate some of these steps, or make them easier.
  • This can be game-changing.

Some ways in which electronic copies can eliminate steps:

  • You can store your entire electronic library on one device (or synced to multiple devices).
  • If you know where your device is, then you know where all of your electronic books are.
  • This can mean you don’t have to physically search for anything.
  • (Electronically searching to remember where you put something can be much easier.)
  • You also don’t have to remember to bring a specific book. You just have to remember to bring one device.
  • (Which can be a device like your laptop, phone, or iPad which you’re in the habit of carrying with you anyway).
  • If you’re already using your computer, you don’t have to get up to go get your book.
  • You also don’t have to change positions.
  • Being able to stay in the same position and location can make it much easier to start reading.
  • It can also be easier to remember your place. A lot of software will leave the book open to the same place as when you were last reading it.
  • Searching can be easier, faster, and less distracting than flipping through a print book. (This isn’t true for everyone, but it’s true for some people).
  • Electronic bookmarks may also be easier to use than physical ones.
  • You don’t have to look for highlighters, pens, pencils or notebooks, all of that is right there in the book-reading software.
  • Eliminating these steps can make reading a lot easier.
  • Making it easier can make it possible.

This isn’t the right strategy for everyone; computers, phones and other devices have their own executive dysfunction pitfalls. But for some people, it makes reading much more possible.

Short version: Some people have trouble reading print books, even if they have normal vision. Sometimes the reason for this is that executive dysfunction (or another disability) makes some of the steps involved in starting to read a print book difficult or impossible. (Eg: people with ADHD might get distracted looking for the book.) For some people, using electronic books instead of print books can make reading much more possible. Scroll up for some specific reasons that electronic books can help.

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.

Everyone gets blamed for their condition

Real Social Skills

People with depression and other mental illnesses get told that they can get over it with diet, exercize, and positive thinking. They also get blamed for having it, and told that it’s their own fault. This is wrong.

It’s also a common experience of everyone with every condition there is. This is not unique to mental illness.

Everyone with a disability, illness, or other condition gets blamed for it. People with every condition get told that it’s their fault, that they caused it by eating wrong, sleeping wrong, thinking wrong, or not being sufficiently careful.

People with every condition get told that medical treatment is toxic and wrong, and that if they just stop believing big pharma, they’ll recover. Even people with cancer.

People with every condition get told that they’re causing their own problems by being too negative, and that they’d get better if they’d just think positively. Even people with spinal cord injuries.

People with every condition get told that they will be healed if they just have faith and pray hard enough. Even people whose condition is obviously genetic.

People with every condition get told that they’re imagining things. Even people with unmistakable visible physical conditions.

People with every condition face this kind of prejudice. It’s not unique to any group. We should stand together and acknowledge that we all face it, and that it’s wrong to do to anyone.

Short version: People with every condition get blamed for it and told that things like positive thinking and rejecting big pharma will make everything better. It isn’t unique to mental illness. It’s wrong to do to anyone.

Describing yourself accurately isn’t appropriation

Real Social Skills

A reader asked:

I have ADHD and I need to rock and twitch my hands to concentrate. Is it appropriate to call it stimming?

I think that’s perfectly fine. That’s a really common reason autistic people stim, too. There’s a lot of overlap between ADHD traits and autistic traits.

I think that it’s actually good if we use the same words to describe things that are the same or similar. A lot of groups cross-disability have far more in common than we realize, and I think we could all benefit a lot from sharing concepts and coping mechanisms.

That said, calling it stimming might lead to some awkward situations. It’s a term mostly used by autistic folks. Sometimes when you (in my view accurately) refer to it as stimming, that might cause people to think you’re autistic. That’s something you should be prepared for if you want to start using words that are mostly used to describe autism.