I used to think that the reason people feared disability and openly stated that they'd rather be dead than disabled was because of "The Tyranny of the Toilet" as I believe Catherine Frazee called it. What is the Tyranny of the Toilet? It's the idea that people, when they imagine themselves disabled, they imagine having to be assisted in the washroom and then catastrophize what that means and how that would feel. "I don't want someone having to wipe my butt," they say as if this is the worst thing that could happen to another person, to be made vulnerable in that way.
But now I'm wondering if there is something else that people fear, and maybe fear even more deeply. I don't know if this experience is unique to me because of the combination of my weight and my disability, but I suspect not. This has happened to me many times, in many ways, but became clear to me because of a frank chat with a stranger in an elevator.
We had gone to see the move 'The Trolls' this Saturday with the girls. When we got there, to a later showing than we usually go, the line up was huge!! The place was packed. As we waited in line I asked Joe to check and see if I had cough drops, Ricola to be precise, in my bag. I did not. I still have a bit of a cough and didn't want to have a coughing fit in the movie. I knew it was going to take a long while to get tickets so I scooted out and down the elevator to B1 where there is a Shopper's Drug Mart. I got the drops, and a special treat for Joe and the girls, and headed back up.
I pushed the button for the elevator and didn't have to wait long. I got on and it was empty. I knew that we'd stop at the lobby so I positioned myself to give maximum room. Two women and a young man got on. He got off at 2 and we had 2 more floors to go. I turned and asked the women if they were going to a movie and they said they were. I asked what they were going to see and they told me the movie they'd chosen. They then asked me what I was going to see, I said, "Well, we're here with two kids so we're going to see 'TheTrolls."
"Oh," said one, a little surprised.
I looked at her quizzically and said, "Oh?"
She said, "I probably shouldn't say this but I always sort of think of disabled people being alone in the world."
"I'm not alone," I said, "I'm here with my husband and we're taking a couple of kids to the movie." I admit that I said the word 'husband' purposely here. It's a word that stops conversation when I use it.
The doors opened and I wished them a good time at the movie and they wished me a good time.
For what it was, it was pleasant. And for what it was, I'm glad the conversation happened. It clarified for me what I've been seeing in the world for well over a year now. People are always surprised that I'm not alone. And even when I'm visibly not alone, like when I'm with Joe, people still see aloneness because they see a solitary disabled person with someone who is paid to be with them. 'Careprovider Joe.' And when I'm with a group people are surprised that I'm actually with the group, not an add on somehow following along but not really part of anything.
It's like disability causes a social death. That disability means loss of friends and family. That disability means a life lived in isolation. That disability means looking out at rather than being out with. That disability means a heart not loved, a sole soul.
I think that people fear disability because they fear disconnectedness, aloneness and isolation. Since they can't see us as part of the world, they can't see us in relationship to, they can't see us enmeshed in our own lives, they fear what they do see.
And what they see breaks their hearts.
And they don't want to live with a broken heart.
I am not alone.
I am loved.
I am valued.
I know these things but they aren't easily seen. I said to Joe we should get those partner tee shirts, you know the one with arrows pointing at each other ... but then we realized that 'I'm With Him' isn't a tee shirt we want to wear these days.
But one day, maybe we should.
Very complex subject. Yes, you are valued, you are loved, but you are also alone. Isn't that the human condition? Often you find great peace in your alone times, you write about simply watching the world around you, not wanting that to be interrupted. Being alone must be a natural part of the aging process, as friends and loved ones drop out of sight. I haven't given much thought to being perceived as alone because I'm disabled. Perhaps I'm too much inside my own conversation to care what others think of me. Oh, sure - when I was younger, but I learned from Earnie and my mom how to be alone and cherish it. As for the tyranny of the toilet, I have wiped the asses and cleaned up several people I loved. You do it for a baby you love, and again at the end of life. Nothing horrible or shameful about it. Makes me a kind of nurse, I guess. And I do like what nurses do.
People in general don't think before they speak. That is why they cling to their own little groups.
If you go out of your tribe, where every word is automatically understood in the correct tribe context, you end up in awkward uncomfortable conversations with 'others.'
People don't like the uncomfortable feeling (instead of using it to THINK).
Most people are not self-aware.
My life since I became a wheelchair user has been exactly the disconnected aloneness that people fear about disability. I'm not loved, valued or even stood up for and there is now no one in my life who isnt paid to be there. I've been housebound and shut away from the world for 4 years and literally no one cares that my whole life has been taken from me, because I'm disabled so I'm no longer a 'real human person'. So able bodied peoples fears/terrors about becoming disabled are very real. But its not the disability that does this, its people and attitudes and choices to exclude. People could do and be different and then disability wouldnt be scary or life ending, but as long as people dont change the very realistic fears about becoming disabled wont either.
h smith, Your post has been sticking with me since I read it Monday. Very sorry this has been your experience. Is there anything this community can do to provide support? Sending you good thoughts & hoping people around you realize how much they miss your being included as part of the group.
-- I can be reached at <> if you want to communicate further. All the best!
Purpletta, thankyou for your kindness. Sadly my experiences are more the norm than the exception, and with the world getting uglier it doesnt feel like thats going to change anytime soon. I dont really know how to process that or my own experiences. And I genuinely dont know what support would look like anymore. I dont mean that in a depressed way, I mean it in a baffled, exhausted way. I don't know what would help and I don't know how to help. I dont know how to stop feeling sorry for myself and be useful. But I do appreciate your response, and thankyou again.
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