Tag: institutions

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.

Two kinds of praise that set off red flags

Real Social Skills
soilrockslove asked:
Two kinds of praise that set off red flags are – lots of praise for normal things like “we have a cafeteria with varied, healthy food!!! And the menu changes!!!” or something similar. And also a lot of buzzwords and words that sound happy like “empowerment” etc. But they don’t ever tell anything they *do* to empower people. It’s just show without substance.
realsocialskills said:
Yes, those are good examples.
I think there’s also a thing where testimonials can be a red flag. Sometimes testimonials are just examples that illustrate that an organization can work for people, and that make it clearer what it does. Sometimes testimonials are brought as evidence that the organization is purely wonderful and that it is absolutely great for everyone involved no matter what.
All real places suck for some people, and organizations that are committed to not noticing this do some scary stuff. It doesn’t mean that good organizations talk about who they suck for on their promotional materials – most don’t and shouldn’t.
Good organizations don’t try to prove that they’re perfect for everyone, though. They try to show that they have something valuable to offer. That’s a huge difference.

The word “institution”

Real Social Skills

In a disability context, “institution” means something like “an organization that keeps disabled folks separate from mainstream society and under the control of others”.

It used to be fairly common practice for families (under great pressure from doctors and state authorities) to send their disabled children to residential institutions and then have no further relationship with them. That’s fallen out of favor in the past couple of decades, but a lot of the underlying power dynamics remain in service providers in other settings.

For instance, group homes are often referred to as being “living in the community” rather than “institutions”, but they also often have identical power dynamics.

Similarly, some places will say that they are not institutions but are rather “intentional communities” or some sort of utopian village because they are farms and cottages rather than big harshly lit buildings. But again, they have the same power dynamics.

The power dynamics can be hard to spot if you don’t know how to look for them, because a lot of institutions will go out of their way to pretend they’re doing something fundamentally different.

Some signs that a place might be an institution

Real Social Skills

Lack of accomodation for disability:

  • An organization workign with disabled or elderly or sick people ought to have a clue about access and adaptability
  • If they don’t, it’s a major red flag
  • Some examples:
  • If there are a lot of people who need wheelchairs, and none of them have personally-fitted chairs, that’s a red flag. If everyone is using an institutional wheelchair, it’s probably an institution
  • If there are a lot of residents who have limited use of their hands, and no one has any adaptive equipment for doing things like changing TV channels, it’s probably an institution

People conflate patient/client opinions with family opinions

  • For instance, if they claim that everyone there wants to be, but then they only talk about what family members say about it
  • If it’s a place people can be put into by their family members without any attempt made to see if they consent
  • If all the information on a website is for family members or social workers, and none of it is directed at people who might live in or get services from a place, it’s probably an institution

If people need staff assistance or permission to contact the outside world

  • If people who can use phones independently don’t have access to phones without asking first, it’s probably an institution
  • If there are no computers available, or all the computers are in public places, it’s probably an institution
  • If you need a password for the wifi and the residents don’t have the password, it’s probably an institution
  • If nobody has a personal cell phone, landline, or computer, it’s probably an institution

Concepts of functioning levels

  • If a place claims to be a last resort for people who can’t function in a normal setting, it’s probably an institution and it’s probably doing horrible things

Bragging about mundane things as evidence of being wonderful places:

  • It’s very common for institutions to loudly proclaim that they have a pool, TVs, a barber shop, a charity shop people can work in, or other such things
  • If they think this is deeply impressive, something is wrong
  • Things that wouldn’t be particularly notable in an apartment building or neighborhood shouldn’t be particularly notable just because elderly or disabled people are involved
  • If people think they are, it’s probably an institution, and it’s probably intentionally confusing clients about what it means to be free and in the community

If people involved are required to regularly praise it

  • Everyone is disgruntled with workplaces or other aspects of their life sometimes
  • Free people express this sometimes
  • If everyone involved in an organization says it’s wonderful, and you can’t find anything people it serves are willing to complain about, something is wrong
  • This is particularly the case if the wall or website is full of testimonials about how great it is
  • And also particularly the case if people are regularly required to sing songs praising the place

If there isn’t serious regard for the privacy of people the organization serves

  • For instance, if there is a description of every single resident and their activities available on a public website, something is wrong
  • If you are brought into someone’s room without their freely given consent just so you can see what the rooms look like, it’s probably an institution

Being allowed to do hard things

Real Social Skills

Mel Baggs added to the post on “Some things about speech“:

I used to have a really hard time convincing people that sometimes lack of speech wasn’t overload or shutdown (or as psychiatry so inaccurately put it, ~anxiety~ or ~dissociation~), but rather just being myself.

And that far from always being a result of stress, speech caused me stress and lack of speech meant I was less stressed.

I knew the autism expert I saw was no expert when I heard her tell me that if we reduced my anxiety, I wouldn’t have to rely on my keyboard so much. Later on I found out she believed meltdowns and shutdowns were not sensory at all but rather ~off task behavior~, ~manipulation~, and ~tantrums~… And I lost my last shred of respect for her.

Also, even when it *is* the result of stress, that doesn’t necessarily mean that something is *wrong*.

Sometimes it just means that life is happening. Like, when I’m doing hard things, my speech gets worse. When I’m working a lot, I look more conspicuously autistic.

This doesn’t mean I shouldn’t work or study or do hard things. It’s important for us to be allowed to do hard things, and to be allowed to be stressed and have lives. Stress is part of life.

Sometimes people try to put us in bubbles where we don’t ever do anything hard or stressful. And take any autistic sign of stress as an indication that something is wrong. And that things need to be lighter and softer and less substantive.

Those places are not good and they are not understanding or accepting. They are hell on earth.

“What he would have wanted”

Real Social Skills

Talking about what someone would have wanted only makes sense if that person is dead.

If the person you’re talking about is still alive, talk about what they do want.

And assume that they want to live. Almost everyone does.

Even if they’re brain damaged, even if they’re in pain, even if they have dementia, even if they no longer recognize people.

They’re still a person. They’re still there. And they still want things.

So don’t ask what they would have wanted. Ask what they do want.

Remembering that people with disabilities have always existed

Real Social Skills

Content warning: This post talks about institutionalization in graphic terms. Proceed with caution.

Sometimes people say things like this:

  • “When I was a kid, no one had all these learning disabilities and syndromes!”
  • “We’re all so much sicker these days. I never heard of all these diseases until recently.”

And – people who say this? You know why you never met anyone like this as a child?

Because, when you were a kid, people with learning disabilities, syndromes, illnesses, etc weren’t allowed to go to your school. A good percentage of them weren’t even allowed to live in your town.

They were kept away from people like you, and kept in horrifying conditions, so that you and other more socially valued people wouldn’t have to see them or know they existed. (It’s not your fault. You were a child and didn’t know. But it was done in your name, partly.) And a lot of them did not survive childhood because they were not given the care that would have made it possible. And this isn’t over. This still happens.

(And people with disabilities are still afraid of it happening to them).

But thing are getting a bit better – or, more accurately, people who have been fighting this evil for decades are starting to win.

So, these days, many children like those who were carefully kept away from you and your peers are allowed to grow up in families. In schools. As part of their communities. Visibly. And, this means more of them are suriving childhood.

And some adults with disabilities are now treated as adults and allowed to acknowledge disability without forfeiting adulthood. Not everyone, not yet. Not enough. But some. More than there used to be, fewer than there should be.

People with disabilities have always existed. And the fact that everyone now has to notice that they exist is a dramatic improvement. It’s a good thing that you see more people with disabilities now. It means some of them aren’t brutally hidden in institutions. Your children are growing up in a better world than you did. Remember this.