Tag: disability hate

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.

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.

A reason your kids need you to talk to them about their disability

Real Social Skills

Sometimes parents avoid talking to disabled kids about disability because they don’t want to make them feel different.

The thing is, it’s not actually possible to prevent your child from noticing that they are different. They will notice that they aren’t just like all the other kids. Partly because it’s obvious. Kids compare themselves to other kids, and to adults that they observe. Disability is as noticeable as the fact that some people are fat, female, tall, short, black, white, or whatever else. Kids notice differences. They will notice this difference too. And that’s ok.

They will notice that you are willing to talk about some differences, but not others. If you refuse to talk about disability, they will still know that they are different. They will just learn that you consider the difference unspeakable.

They will also notice what other people think about them and their disability.

People will stare at your child and make disparaging remarks. People will call them the r-word, and every other disability slur. They will say “special” and “special needs” with a sneer. They will make fun of your child for not being able to do things. They will say, or imply, that they would be able to do them if they’d just try harder.

You can stop some people from doing this to your child (and you should), but you can’t stop them from ever encountering it. They will probably encounter it every day. They will know that they are different from other people, and our culture will teach them incredibly destructive things about what that means.

You can’t stop your child from hearing what our culture thinks of disability — and if you don’t talk about disability yourself, your child will believe that you agree with it.

If you don’t talk to your child about their disability, the only words they will have for themselves are slurs they hear other people call them. You can give them better words, and better information.

If you don’t talk to your child about their disability, they will end up with a lot of misinformation about what their difference means. If you talk to them, you can tell them the truth.

Short version: Refusing to talk to kids about disability doesn’t protect them from feeling different. It just prevents them from getting accurate information about what their disability is and what their difference means. When kids who don’t know the truth about their disability face hate, they have little-to-no protection against internalizing it.

Don’t be mean to fat disabled people

Real Social Skills

Some disabled people are fat.

Some fat disabled people have mobility impairments, and need to use wheelchairs and scooters.

Some fat disabled people need to sit down a lot.

Some fat disabled people need to park in handicapped parking.

Some fat disabled people need to sit in the disabled seating on busses.

Some fat disabled people need to use the bathroom stall that has grab bars.

Some people act like fat people are somehow “not really disabled, just fat” as though the two are somehow mutually exclusive. They’re not. Fat is not a cure for disability. Fat disabled people are as disabled as thin disabled people. Fat people have every right to exist in public and use mobility aids and other adaptations.

Some people act like being mean to disabled fat people will somehow force them to stop being fat and disabled. It won’t. Being mean is not a cure. If you yell at a fat disabled person for needing to park close to the building, it won’t give them the ability to walk further safely. It will just mean that their day got worse because someone decided to be pointlessly cruel to them.

Short version: Fat disabled people exist, and have a legitimate need for access and accommodations. Being mean to fat disabled people for having access needs doesn’t cure their disability. It just makes the world a crueler place. Don’t be a jerk.

You don’t have to be perfect at self care to deserve medical treatment

Real Social Skills

Disabilities and chronic conditions often require difficult and time-consuming self care.

For instance:

  • People who are paralyzed have to pay very close attention to their skin to avoid dangerous pressure sores
  • People with CF have to do a lot of breathing treatments
  • A lot of people have to keep track of a very complicated medication schedule
  • Or any number of other things

A lot of medical complications are preventable with the right self care. But no one manages perfect self care, because self care is hard, and people are human and nobody is perfect.

Making a mistake that leads to an injury that was theoretically preventable sometimes pisses off doctors. It’s also something that people sometimes feel very ashamed of. This can be a deterrent to getting medical care.

It’s not right that it’s this way. You don’t have to be perfect to deserve medical care. Sometimes you make mistakes and need treatment. That’s part of the human condition, and it doesn’t mean you’re somehow less deserving.

Nondisabled people injure themselves doing careless things all the time. People who fall off bikes in a moment of carelessness and break bones get to have medical treatment without facing that kind of hate. So do people who burn themselves cooking. Doctors are capable of understanding that people make mistakes and get hurt — and people with disabilities deserve this understanding just as much as anyone else.

Everyone who needs medical care deserves it. Including people who make mistakes. Including people with disabilities who make mistakes. You don’t have to be perfect at self care to deserve treatment.

Rigorous attention to self care is important. So is medical support for needs that arise, including as the result of mistakes.

When it takes a long time for someone’s ableism to become apparent

Real Social Skills
A reader asked:
I’m physically disabled, and it seems like it usually takes abled people i become friends with a LONG time to “show their true colors” about it. I’ve seen it take 2 years from the first time they knew i was disabled and I openly spoke about it around them. Is this common? Why the heck so long?? Are they actively trying to hide it….or am i just missing a lot of subtle red flags? (Hard to imagine since @ this point I actively watch for them, but anything’s possible!)
realsocialskills said:
I’ve been wondering about this recently, too. I mostly encounter it in professional contexts (and I’m not sure whether to describe my disabilities as physical or not since autism affects my movement in disabling ways but I’m not mobility-impaired), but I think it’s a similar dynamic.
I think that it’s that abled people really, really don’t know very much about disability. They don’t know about the sheer logistical challenges we face, and they *really* don’t know about the stigma.
They think, on some level, that disability is an overwhelming tragedy, and that if we do things other than be overwhelmed by tragedy, then disability can’t really matter much. And they are really, really not emotionally prepared to deal with the fact that disability matters all the time, and they’re not at all prepared to deal with it in a matter-of-fact way. And meanwhile, for us, it’s just *life*.
We learn early that it’s our job to protect abled people from ever having to notice either the logistical problems or the hate we face. And especially, we learn not to show that it hurts us. And double especially, we learn that we are not allowed to tell friends or caregivers or ~nice ladies~ or others that they are hurting us. And triple especially, we learn that we are not allowed to be angry because that’s ~just the way it is~ and ~people don’t understand~.
I think that protecting abled people from having to notice disability and ways we are harmed as disabled people goes so deep we do it automatically and without noticing most of the time. And abled people *really* don’t notice, because they think it’s normal and natural and have not had any need to challenge it. They feel completely entitled not to have to deal with disability, and the entitlement feels so natural that they don’t even *notice*. And we don’t notice how much we protect them, either.
Some of the people we protect have been exposed to a lot of disability awareness and sensitivity training. And who can recite a lot of information about various conditions, know not to pet service dogs, and would never touch someone’s mobility equipment, and who tell others off for using the r-word. And maybe they know what the ADA is and know a few horror stories about institutions in the 60s. And, they think that means they know how it is – they have no idea how sanitized all of that is.
Sensitivity training teaches them that we are just like them. It does not teach them to cope with all the ways in which we are very different.
I don’t have a good answer to this. The only that I’ve found is that it helps to be more open with my friends about what I am experiencing, what my limitations are, and how I feel about what is going on. There’s a price I pay for that, though. The other thing that helps is having more disabled friends, or friends who understand being marginalized in a way that your family is not (eg: I’ve found that some nondisabled LGBTQ people have been able to relate to a lot of this.)

The power of “I can’t”

Real Social Skills

People will try to tell you that you can do things you can’t do.

It’s hard to insist that no, you can’t do them. Or that you can’t do them safely. Or that you can’t do them without using up all your spoons and losing the capacity to do things that are more important.

They will tell you that this is giving up, or being lazy. They will tell you this with their words and their body language. And by pretending that you have not said anything, and just refusing to take into account your actual abilities.

They will tell you this with hate. They will tell you this with good intentions. They will tell you this as concern trolls and terrified parents. 

Sometimes, in that situation, it’s easy to feel like you aren’t allowed to say no until you’ve run yourself into the ground trying, or until you’ve tried and failed and things have gone badly wrong. Because people won’t believe you, and will put pressure on you in all kinds of ways.

The thing is, they’re wrong, and you don’t have to believe them or comply with their demands.

It helps a lot to be confident in your ability to judge what you can and can’t do. Sometimes you have to say no over and over. 

Knowing ahead of time that something won’t work for you and insisting on planning accordingly isn’t lazy.

It’s being responsible.