Disability vs special needs

I’m sometimes asked “Why do you say “disability” instead of “special needs”?

Here’s the most basic reason:

  • When people say “special needs”, the next word is usually “kids”.
  • When people say “disability”, the next word is often “rights”.

I’m an adult, and I want equal rights. For that reason, I’m going to keep using the language that has room for adulthood and power.

On bearing witness to the humanity of disabled people and the destructiveness of ableism

One of the most powerful things that we can do is to bear witness to the humanity of disabled people and the destructive consequences of ableism. When we bear witness to our humanity and to the things that others do to us, it changes the conversation. Our stories are powerful.

Some people have the privilege of being largely untouched by ableism. (Or being untouched by a particular kind of ableism.) Most people who are privileged in this way are also unaware of how deeply marginalized disabled people are being harmed. (I’m using disability as the primary example here, but this actually applies to ever kind of marginalization.)

We are dehumanized, and a lot of people don’t notice that it’s happening. They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them. When people learn how to notice, they often start caring.

Bearing witness to our humanity means making it impossible to discuss disability in the abstract. It means making people have to notice that when they talk about disability, they’re talking about *actual human beings*. We do things. Some of us have jobs. Some of us are artists. Some of us write. Some of us are married. Some of us are fans of TV shows. Some of us are experts in our fields. Some of us cook. All of us matter. Making people notice us as real human beings changes the conversation about disability.

Speaking out about the consequences of ableism also changes the conversation. When institution survivors bear witness to what happens in institutions, it becomes much more difficult for people to believe that institutionalization is good for disabled people. When people speak out about what authoritarian childhood therapy did to them, it’s harder to pretend that compliance training is harmless. When people speak out about electric shock, it is much harder to pretend that people who are tortured with electric shocks think that it makes their lives better.

When disabled people talk about what it is like to learn the name of their disability by eavesdropping and googling, some parents listen. Likewise, when disabled people talk about what it’s like to grow up without accurate language for ourselves, some parents come to understand the importance of talking to children about their disabilities.

Bearing witness also matters to other disabled people. We often learn to overlook our own humanity. We often learn to disregard the things that others have done to us. When other disabled people are unapologetically human, it’s easier to see ourselves as human. When other disabled people talk about the harm ableism does, it’s easier to remember that these things shouldn’t happen to us.

This doesn’t always work. When people with disabilities bear witness to our humanity and to what happens to us, we often get hostile responses. Even when some people are listening, there are usually also angry people who are not. Even when people are eventually willing to listen, they are often initially angry and mean. Those of us who talk about these things pay a price for doing so. Everyone has the right to decide for themselves whether this is a price they’re willing to pay in a given situation.

Your stories belong to you. Stories can be a powerful force for liberation, but you are not a liberation object. You are a person. You have the right to decide whether or not to tell your stories. If you choose to tell stories, you have the right to decide which stories to tell, how you want to tell them, and who you want to tell them to. (Including, whether or not you want to answer questions that people ask you.) You can also change your mind. Doing some advocacy work doesn’t make you an advocacy object, and it doesn’t strip you of the right to say no. No matter how politically or socially useful your stories are, they belong to you.

“It’s not just about wheelchair access”

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

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

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

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

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

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

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

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

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

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

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

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

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

When fear of wheelchairs is really fear of institutionalization

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.

Your role is not permision

Being a disability expert of some kind doesn’t give you the right to violate boundaries. People with disabilities are people. Being an expert of some kind doesn’t mean you have a relationship to them. It doesn’t mean you have any authority over them, either.

Being a parent of a disabled kid isn’t permission to take on a parental role with every disabled person you encounter.

Being a nurse doesn’t make it ok to ask people with disabilities invasive medical questions.

Being disabled doesn’t make it ok to tell other disabled people how to live their lives.

Being a special educator doesn’t give you the right to tell disabled people how their minds work. Or what they can and can’t do. Or to force them to make eye contact.

Being a therapist doesn’t make it ok to take on a therapeutic role with every disabled person you encounter. Treatment requires consent; being a therapist doesn’t make you an authority on anyone else’s life.

Being a researcher doesn’t give you the right to tell people with disabilities what they can or can’t do, or how they should live their lives.

Being disability staff doesn’t mean that random disabled people you encounter in public places need your help, or that you know how to help them, or that you have the right to tell them what to do (actually, that applies even when you *are* someone’s staff).

People with disabilities have the same rights to privacy and autonomy as anyone else. No matter what kind of expertise you have or think you have.

Restraint is violent

In what cases is it okay to restrain a kid? Is it okay to pin a kid on the floor if they try to hit you or throw something at you?
realsocialskills said:
I’m guessing that you are not a police officer or emergency responder, and that you’re asking this in the context of either parenting, childcare, or education.
In those settings, it is never ok. (Edited to add: it’s never ok in the context of mental health treatment either.) Sometimes it’s the least bad response when things go very badly wrong, but it’s never ok, and it can’t be part of someone’s plan.
I asked a friend who has more experience than I do caring for disabled children (I’m assuming the kids in this scenario are disabled because people generally assume as a matter of course that it’s not ok to treat nondisabled children this way), and she said this:
Sometimes mistakes are made and situations escalate to a point where a restraint is the least harmful option. That doesn’t mean it’s not harmful. That doesn’t mean it’s okay. When that happens, it is really important to acknowledge the harm that has transpired and to go back over the incident and events leading up to it and figure out what went wrong and how we can prevent it happening again. (quote ends here)
In the same way that, if a kid pinned another kid to the floor, you’d consider that unacceptable and plan to make sure it doesn’t happen again. It’s even more serious when an adult does that.
It is never ok to put restraint into someone’s care plan. It is never ok to see it as a solution. Restraint is a failure, not a solution.
Restraining someone is an act of physical violence. Pinning someone to the floor is a particularly invasive kind of physical violence. It’s a brutal  and physically dangerous act.
Violence against kids counts as violence. Violence against people who can’t talk counts as violence. Violence against people who are physically aggressive counts as violence.
It is never ok to restrain someone as a punishment. Or a consequence. Or to teach them a lesson. Or to prevent them from getting away with something. Or to send the message that their actions are unacceptable. Or to make them calm down. Or anything remotely like that.
If you’re coming here looking for absolution, I’m not giving it to you. If you’ve pinned someone to the floor and you’re wondering if it was ok, no, it wasn’t, and you need to figure out a way to solve the problem so that you don’t do that again. It doesn’t mean you’re a terrible person or incapable of supporting the children in your care, but it does mean there’s a problem and you need to find a better solution.
If you’re a teenager or a kid, and an adult responsible for taking care of you pinned you to the floor and you’re trying to figure out if it was ok, no, it wasn’t. I’m sorry that happened to you. It shouldn’t have. No one should do that to you. No matter what you did, that wasn’t ok. If you’re violent and you hurt other kids or adults, that’s a problem you need to work on solving, but it doesn’t mean it’s ok for adults to pin you to the floor. They should be finding better ways to help you.
For more information, check out Stop Hurting Kids: Join the campaign to end restraint and seclusion abuse in schools. In particular, this fact sheet about restraint and seclusion is a good place to start.