Tag: wheelchair

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.

Look past the wheelchair and see the disability

Real Social Skills

Wheelchairs don’t have disabilities; people do. Unfortunately, many people intuitively think of disability as residing in wheelchairs and other adaptive equipment, and forget that it’s a basic fact about a person and that person’s body.

This can cause a lot of problems and misunderstandings.

For example: Jane uses a wheelchair most of the time, but sometimes walks when she needs to go somewhere inaccessible. That’s nastily exhausting, bad for her health, and comes with a significant risk of injury. Sometimes she does it anyway because it’s important for her to go to an event, or take a class, or do something else in an inaccessible place.

Jane’s sister Sarah is getting married, and has chosen an inaccessible location. Jane decides that it’s important enough to her to go to that wedding that she’s willing to go even though she won’t be able to bring her wheelchair.

All of Jane’s relatives assume that this means that she is ~getting better~, and doesn’t need mobility equipment anymore, even though her disability is not an illness and is not something that can be changed. What it actually means is that she’s having a very difficult and possibly dangerous day because her sister made an inconsiderate choice.

Jane’s wheelchair doesn’t have a disability; Jane does. And when Jane isn’t using her wheelchair, it doesn’t mean that she’s somehow less disabled; it means that her needs aren’t being met.

Or, another example: Bill has a chronic illness. He usually needs his wheelchair to get through the day, but sometimes he’s feeling particularly energetic and decides to walk somewhere. His friend Joe sees him and says “It’s so nice to see that you’re getting better!”. This bothers Bill, because he’s not getting better, and he’s not going to get better, he’s just having a day where taking a walk is an option. Bill would like people in his life who don’t understand his reality to stop making inappropriately intimate comments about his health.

There are many other examples, for just about every disability category. People make a lot of unwarranted and intrusive assumptions about someone’s disability and health based on what adaptive equipment they are or aren’t using on a particular day. Those assumptions can cause serious problems for people, and it’s important to stop making them.

Mobility equipment doesn’t have disabilities. People do.

A rude thing that people do to wheelchair and mobility scooter users

Real Social Skills
So, here’s a thing that happens a lot:
  • Someone rides a wheelchair or mobility scooter into a room that has many chairs in it
  • They want to sit on one of those chairs.
  • Several people, trying to be helpful, dart in to remove the very chair they wanted to sit on

This is very annoying.

  • Especially when it happens several times a week
  • Especially when the people who dart in to remove the chairs are very proud of themselves for Helping The Disabled
  • Even more so if they don’t understand “actually, I want to sit in that chair”, and keep removing it anyway
  • Even more so if the person has to physically grab the chair they want to sit on to prevent it from being removed
  • (And sometimes people react badly to being corrected and become aggressive or condescending)

Do not do this annoying thing.

  • Instead, find out what the person you want to be helpful to actually wants
  • People who use mobility equipment are not actually glued to it
  • And different people have different preferences about where they want to sit
  • You can’t know without asking them
  • (You can’t read their mind, Some people seem to think that mobility equipment transmits a telepathic call for help regardless of the person’s actual apparent interest in help. Those people are wrong. You have to actually ask)
  • You can’t know where someone wants to sit unless you ask, so ask
  • One way you can ask is “Would you like me to move anything?”

If you forget to ask, and make the wrong assumption:

  • Recognize that you have been rude
  • And apologize, and say “Oh, excuse me” or “Sorry. I’ll put it back.”
  • This is the same kind of rude as, say, accidentally cutting in line
  • Or being careless and bumping into someone
  • This is not a big-deal apology, it’s basically just acknowledging that you made a rude mistake
  • People make and acknowledge rude mistakes all the time with nondisabled folks
  • The same people who say “excuse me” when they bump into a nondisabled person, are often completely silent when they do something rude related to someone’s disability
  • Being on the receiving end of a lot of unacknowledged rudeness is degrading and draining. Particularly when you see that the same people who are rude to you without apologizing say “sorry” and “excuse me” to people without disabilities they interact with
  • Do not be part of this problem
  • When you are inadvertently rude to someone who has a disability, it’s important to acknowledge and apologize for it in the same way you would for any other inadvertent interpersonal rudeness

Thoughts on aging, assisted living, and death

Real Social Skills

When people age, they often move to assisted living facilities, either by their own choice or in response to outside pressure. Often, these facilities present themselves as being basically just like living in your own apartment, except that they clean for you, provide meals, and offer enjoyable activities.

And, when people first move in, this is generally true. People who can do the activities of daily living without help retain control over their lives, can come and go as they please, and live very similarly to people who live in their own places. But as residents age, they loose physical and cognitive abilities, and often lose control over their lives. What once looked like an apartment can look like an institution really quickly when you start to need more help.

On TV, we never see aging or death depicted very accurately. People who die on TV don’t decline over time, they’re just there until they’re not, and sometimes they look perfectly healthy in a hospital bed before they aren’t there. And sometimes, not being there isn’t dying, sometimes it’s being put into a home.
Real death is not like that. Real death is not usually sudden. People who die of old age normally become disabled first. On TV, when you become disabled enough for it to matter, you disappear. In real life, you are still there, you are still a person, and you still care about your life.
So, if you’re old enough to be considering moving into an assisted living facility, you’re old enough that you need to plan for what will happen as you become more disabled. Don’t assume that the people who run your residence will know what to do; you will be better off if you make the decisions rather than outsourcing them to other people.
On valuing your life:
If you are old, people might pressure you to refuse treatment for medical conditions you have so that you will die sooner. They might euphemistically call this dying naturally or not prolonging the dying process. But there’s nothing unnatural about using a feeding tube, treating an infection, or any number of other things people might try to talk you out of. Do not get all of your medical information from people who see the world this way. Medical decisions are yours to make, and make sure that the people advising you on your care believe that your life is worth living.
Pay attention to the disability community as well as the aging community. Some people feel like they would rather die than come to be impaired in a way they’re dreading. Hearing the voices of people who live with those impairments and value their lives will make it much, much easier for you to get past that fear.  Everything you face physically as you age is something that some disabled folks live with long-term. They know a lot about how to be disabled and still be free, self-respecting, and live. Disabled adults who live free lives and avoid nursing homes have had to gain a lot of skills that you are going to need. Not all of what they know has reached the aging community. Learn from both.
In particular: There’s a lot of fear and misinformation about feeding tubes. When people ask you to fill out a form indicating which treatment you do and don’t want, feeding tubes are one of the first things they ask about. People often see eating with a feeding tube as something like being a zombie, being undead, and living an unacceptable life. But feeding tubes are really just a way to eat and stay alive if you can’t use your mouth to eat. Similarly, breathing support is just a way to breathe. It doesn’t make you a zombie. It lets you stay alive and gives you more time to live and love and care about things.
Questions to consider:
  • When I am no longer able to walk as far as I want to go, how will I get a good wheelchair and learn how to use it?
  • If I lose the ability to speak, how will I communicate?
  • If I develop dementia, how will I communicate as I decline cognitively? What do I need to do now to make sure that if I develop dementia, I will still be treated like a person?
  • If I need assistance in the activities of daily living, will I still be able to decide how and when to do them, or will those decisions be governed by staff convenience?
  • If others decide that I am a fall risk, will I still be able to make my own decisions about when and how to get out of bed, and whether to use a bed alarm?
Just, generally speaking – your life does not end when you become disabled. It just changes. When you become disabled, your life will still be worth living, and you will still care what happens to you. Don’t let anyone talk you into devaluing it, and plan to keep your freedom.

Getting real about physical accessibility

Real Social Skills

Something I’ve noticed:

There are a lot of ramps, seating areas, lifts, and other such things that aren’t available to wheelchair users because they are constantly full of people pushing children in strollers.

Sometimes, this is because people are astonishingly inconsiderate, but often it’s the result of terrible design.

People assume that accessibility features are only useful for chair users. Then they design them to only have enough capacity for the (small) number of chair users they expect to be there. Then, everyone with a stroller uses them, and the building remains almost as inaccessible to wheelchair users as it was before.

When you are creating an accessibility feature, do not fall into this trap! Design it to have the capacity for all of the things it will be used for.

Some concrete examples:

  • If your building has multiple high-traffic entrances, it needs to have multiple ramps
  • Elevators need to have enough capacity to accommodate the number of kids in strollers, chair users, and people with luggage who will come through on a regular basis.
  • Family restrooms should be accessible. So should some of the stalls in the regular men’s/women’s/unisex bathrooms.

Just, generally speaking, keep in mind that in order to make an access feature usable, there has to either be enough to go around, or enforcement preventing unauthorized use. Unless you want to chase mothers and infants away from your ramp, make it big enough to accommodate traffic from both wheelchair users and strollers.

Don’t touch wheelchairs without permission

Real Social Skills

Touching someone’s wheelchair, or other mobility equipment, is a really big deal. You shouldn’t ever do this without permission.

Part of the reason this is a big deal is that most mobility equipment users experience their mobility device as part of their body. It’s invasive and bad to touch people without their permission.

But it’s actually even more wrong to touch mobility equipment without permission than it is to touch someone without permission generally. 

Messing up someone’s mobility equipment means they can’t get around. It can also sometimes cause immediate injury. It can also lead to injury by making the equipment less safe to use (for instance, if you screw up someone’s cushion and they can’t afford to get it fixed right away, that could cause a pressure sore.)

Touching mobility equipment without permission is a threat to use dangerous force and hurt someone or leave them stranded. Even if you don’t mean to be threatening. Even if you think you’re helping the person. Even if you think you’d never hurt anyone. It’s never ok to make another person that vulnerable without their permission (unless someone else is physically attacking you and you are in danger to the point that violent self-defense is justified.).

It’s sort of like… you don’t touch people without their permission. And you *especially* don’t grab someone without permission. And you *especially espeically* don’t put your hand on someone’s throat without permission. 

Moving someone’s mobility equipment without permission is like attacking someone with handcuffs. (Or worse).

Don’t do it.