Andrew Wyeth, "Christina's World"
A lot of people equate "acceptance" with "giving up."
This is not true.
I'm in a book club that's reading A Piece of the World and one of the discussion threads that keeps popping up is that the main character, Christina (who was a actual living, breathing person) is too "accepting" of her disability. She doesn't fight back, she doesn't try, she just gives up.
Now, the book is about Andrew Wyeth's famous painting, Christina's World, and the woman behind it, Christina Olson, who is our narrator. We aren't sure what sort of illness she had, but it was a degenerative one that eventually took away the use of her legs and other parts of her body.
In the novel, Christina is first fitted with braces to "fix" her legs. The braces are incredibly painful, causing her to bleed and bruise, and they don't help. She stops wearing them. Her parents want her to try a treatment at a hospital, but when she and her father get to the hospital, she refuses to enter. Later in her life, she tries one last time, but is told to "rest".
But Christina doesn't pity herself; she goes on with life as usual. She doesn't want treatment because she doesn't think they'll work, and she doesn't see her body as something that is wrong--she's just the way she is.
Some people in the group, though, are so irritated that she doesn't try. But what is gained from constantly trying to change things, in pursuing futile treatments that may not help? Christina has decided that she doesn't want to keep trying things that are painful and unhelpful. That's her choice, and that's her call. But it doesn't mean she's just flopping over on a couch and saying, "I give up! I shall Lay Here On My Bed For the Rest of My Days!"
All of us eventually die. All of us will, eventually, have our bodies betray us. Christina's mother says in the book that Christina is just the way God made her. And that's the way I feel, too, about my body. This is just how I am. Christina accepts it, and goes on with her life.
Now, does that mean I don't try to fix things? Well, no. I wear glasses and got braces and I do love useful medical treatment that keeps me alive. :) But there are also things that I know I won't do, treatments I won't try, and bridges I won't cross, in the name of keeping me alive or "fixing" things.
Some Deaf people will not have cochlear implants. It's actually a big topic in the Deaf Community (or it was--not sure about now?). Do we try to "fix" a disability (being unable to hear), or do we see it as a disability at all? We know how I came down on that side of the question, but again, I wasn't born Deaf. And a CI is a bit different that a situation that really can't be fixed or cured or changed.
Have I given up? No! But I have accepted my body the way it is. I have accepted its limitations and I'm not willing to do things that may or may not "fix" me.
This isn't giving up--it's just acceptance. And that takes work. It's hard to try to be even-keeled about things like maybe never having my own children. It's taken years of work. But without acceptance, I'd be constantly chasing some ideal of physical perfection that just isn't possible. I'd be wasting money and time. There are other things I'd rather do, honestly, than sit in another doctor's office.
As Christina's body declined even further, she still tried her best to do her everyday things. To some, her world was very small, because she never lived anywhere but her small town in Maine, and even then, nowhere by her family's farmhouse. She lived with her family all her life. But by saying that her life was less than, or sad, or that she gave up--that denies her any agency in her life. It denies her hard work of acceptance and living her life on her terms.
Does her life make other people uncomfortable? Well, probably. She didn't use a wheelchair so she dragged herself around, propelling herself by using her arms. This was probably quite...well, odd, for a lot of people. But too bad for them.
I remember when I needed insulin right after transplant, and a friend of mine said "ew!" when I injected myself at the dinner table, in my own house. "You don't have to look," I shot back. Normally, if I went out to dinner and I was with people, I'd go into the bathroom and inject myself. But in my own house? Nope. Not happening.
People used to complain about my CF treatments. "When are you going to be done with that?" Like the nebulizer was some sort of icky contraption, or a poisonous animal. "When I'm done." I had a roommate once who didn't want my machines in the bedroom we shared; she wanted me to put them in the living room of our townhouse. I didn't want to be doing my treatments in front of total strangers, or getting lots of nosy questions about what these machines were and why I needed them. I wasn't some sort of sideshow exhibit.
I don't need to make my life easier for other people. I need to make my life work for me. And so did Christina.