institutionalization

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. 

Tl;dr 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

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.

An example of both types of mental health stigma

Content note: This post contains both criticism of and respect for the mental health system. If you find either upsetting, it’s likely that this post will bother you.

I wrote recently about two distinct kinds of mental illness stigma. There’s dismissiveness, where people aggressively deny that someone’s mental illness is real. There’s dehumanization, where people believe that someone’s mental illness is real, and treat them as though their condition makes them less than fully human. Both are common, and people who have experienced one more than the other tend to have very different perceptions of the mental health system.

One example of difference in perception: Mental health advocates often say things like “Medication for mental illness is just like insulin for a diabetic”. People who have mostly faced dismissiveness often see this as validation; people who have mostly faced dehumanization often see it as a threat.

From the perspective of someone who has mostly experienced dismissiveness, it might sound like this:

  • I’m really glad that someone understands how serious my medical condition is
  • People have told me over and over that I don’t have a real problem
  • Or that medication is just a crutch I’m using to avoid dealing with things
  • Or that it’s whiny to want medication
  • Or they might say things like “You’re not sick. People with cancer are sick.”
  • My medication is really, really necessary
  • Or even: my medication saved my life, and I think I’d die if I stopped taking it.
  • I’ve had to fight my doctor, my family, or my insurance company to get access to the medication I need.
  • It messes up my life when people don’t take my need for medication seriously.
  • I’m glad someone gets it about how real my medical condition is, and how important it is for me to have access to medication.

For someone who has mostly faced dehumanization, a statement like that might sound more like this:

  • People have treated me like I’m not a person, and use analogies to physical conditions to justify it.
  • People have made me take medication I didn’t want to take, that did things to my brain and body that I didn’t like.
  • They’ve done this to me in order to change how I felt, thought, or behaved.
  • They’ve told me that what they were doing to me was just like giving insulin to a diabetic.
  • And that this meant I could not possibly have any valid reason to object to the treatment they wanted me to have.
  • But diabetes and mental illness aren’t actually all that similar.
  • Insulin-dependent diabetics who refuse treatment die. When I refused treatment, I didn’t die. It’s not the same. I’m not sick in that way.
  • The way I am is not the same as having a life-threatening physical condition with an obvious straightforward life-sustaining treatment.
  • It’s important that people understand the difference.
  • When they don’t understand the difference, they treat me as though I’m not a real person unless I am on the medication they want me to be on.
  • People say “unmedicated” like it means violent, dangerous, or incapable of understanding something. It doesn’t. It just means that someone isn’t taking medication. That doesn’t tell you anything in itself.
  • I need people to respect me as a person, and respect my right to make treatment decisions. When they don’t, things can get really bad really fast.

There are numerous other examples of things like this. Most things people say about mental health look very different to people who have primarily experienced dismissiveness than they do to people who have primarily experienced dehumanization. Neither perspective is right or wrong exactly; both are important and incomplete.

Access to psychiatric medication is important; respect for the humanity and human rights of people who have been diagnosed with mental health conditions is also important. Things aren’t great for anyone, and they could be a lot better for everyone.

tl;dr Mental health discourse often looks very different depending on perspective. People who have mostly faced dismissiveness tend to see things one way; people who have mostly faced dehumanization tend to see things a different way. Scroll up for a concrete example.

"As a last resort"

Content warning: This is a graphic post about brutality towards people with disabilities. ABA and justifications for abuse are discussed. Proceed with caution.

People do a lot of brutal things to people with disabilities, including children.

Some examples: pinning them to the floor, punishing them with electric shocks, medicating them into immobility, putting them in 10-40 hours a week of repetitive behavioral therapy, taking away everything they care about and making them earn it by complying with therapy, taking away their food, and confining them in small places.

These things are now somewhat politically unpopular. We identify, as a culture, as having got past that point. We think of this kind of brutality as something that happened in the past, even though it is still common.

What this means in practice is that whenever people do brutal things to someone with a disability, it will be called the last resort. People doing the brutal things will claim that they minimize them, that there are protections in place, and that they only do them when necessary.

For example, this is an excerpt from the (as of this post) current ethical standards for BCBAs (certified ABA experts):

“4.05 Reinforcement/Punishment.

The behavior analyst recommends reinforcement rather than punishment whenever possible. If punishment procedures are necessary, the behavior analyst always includes reinforcement procedures for alternative behavior in the program.

4.06 Avoiding Harmful Reinforcers. RBT

The behavior analyst minimizes the use of items as potential reinforcers that maybe harmful to the long-term health of the client or participant (e.g., cigarettes, sugar or fat-laden food), or that may require undesirably marked deprivation procedures as motivating operations.”

In other words, the current standards of ethics for ABA practices explicitly allow punishment, harmful reinforcers, and “undesirably marked deprivation procedures”. But, they claim to “minimize” it, and only do it when they consider it necessary in some way.

This is an empty claim. Everyone who has ever used harmful reinforcers and brutal punishments has claimed that they are only used when they are necessary. Even the people who deprived children of food and made them live and study on electrified floors (graphic link, proceed with caution.) Even the electric shocks and food deprivation used by the Judge Rotenburg Center do not violate the BCBA ethical guidelines, because they claim that they are necessary and only used in extreme cases (even though they shock people for things like standing up from chairs without permission.) 

Whenever any of this is done to someone, it will be justified as “a last resort”. Even if it’s an explicit part of their plan. Even if it’s done regularly with no attempt to transition to another approach. Even if nothing else has ever been tried. Someone who is treated brutally will be assumed to have deserved it.

People call things last resorts to justify doing them. They choose to do brutal things to a vulnerable person, but they think of it as inevitable because it is “the last resort”. Calling something “the last resort” means “it’s that person’s fault I’m doing this; I could not possibly do otherwise.”

    

Treating someone in your care brutally and then blaming them for your choices is inexcusable. 

    

To those treated brutally and told it was a last resort: I’m sorry that happened to you. I’m even more sorry if it’s still happening. It’s not your fault. It’s not because of anything you did, and it’s not because there’s anything wrong with your mind. You were abused because others chose to abuse you.