“Are you at peace with your decision?”
Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.
He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.
“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.
I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.
And yet she likened it to the recommended harassment that people who choose abortion get — or for that matter, people who choose not to abort a fetus with disabilities. She said it was bullying, harassment, pressure to end my own life, no matter how genteel it looked on the outside. Who the hell gets asked repeatedly if they’re at peace with wanting to be alive? For me, choosing a feeding tube is choosing life. There were risks, there remain risks, but the risk of not getting the tube was imminent death, so, yeah. A no brainer, for me. When you choose between two risky things, you choose the one with the most possibility of survival. And feeding tubes are safer than aspiration pneumonia by far.
Are you at peace with your decision? Really? Seriously? Who asks that? Someone profoundly uncomfortable with the kind of life that requires certain kinds of technology. Someone who overtly or covertly hates disabled people.
I intend to use the life this feeding tube gives me, to ensure that no other patient in this hospital has to go through what I’ve been through. That nobody gets asked this question for choosing to live. Not even once. That doctors don’t get to try to persuade patients, especially disabled and other hated patients, that its better to reject life saving treatments. Regardless of what the doctor thinks. When I’m through with them, when the Vermont disability community is through with them, they will no longer be allowed to go there. They can stay bigots if they feel like but they won’t be allowed to express it on the job.
Because we don’t just naturally want to die the moment our body requires some kind of nonstandard way of sustaining itself. Right now I am hooked up to a machine pumping food into my intestines and I LOVE IT BECAUSE IT MEANS LIFE.
MM: [Speaking of some autistic people…] we do not draw a line between inanimate and animate beings, that they all have a soul to us.
Daina: As a child, everything was somewhat alive to me. Perhaps the face-processing tendency that most NTs have enables them early on to distinguish what is alive and what isn’t, and what is human and what isn’t.
Ava: Or maybe what is and isn’t alive, is just another assumption that NTs make. So for the NT child, either because of the strength of those attachments to faces and the accompanying social world, or through some coincidental developmental process, the aliveness of the sensory world fades. Whereas we ACs retain more of the direct experience of the world and less of the face-addiction-belief thing.
Sola: This reminds me of a poem that I studied in high school, “The Pond” by Bjalik. The poem describes a secret place in the forest, where there is a little pond and a tree growing from it. When the poet was a little boy, he used to go there, alone, and listen to the “language of visions,” an unmediated way for the child to communicate with the tree and the pond. The articles that I read about this poem discussed the role of spoken language, as adding the social aspect, separating the initially naive child from the true essence of the world. I was enchanted by the poem. For many months I perseverated on the meaning of communication and language, searching the library for more articles about this. However, unlike the conclusion of the poem, I did not feel that growing up and maturing inevitably meant losing this innocence and being expelled from nature. I felt that I was still that child in the forest. Now that I know that I am AS, I am not surprised that the poem had such influence on me.
MM: We are always sewing souls into the things we create.
Jane: Yes I think soul (essence of being) is created through the creation of a relationship. I call it a moral relationship (which I know sounds prissy or sanctimonious to some), by which I mean a relationship where there is acceptance/acknowledgement of agency and responsibility. When I relate to an object (whether it is another human or a bear I have created out of cloth), with my moral/aware consciousness, when I acknowledge my power to affect (recognize, hurt, heal, shine like the sun or nourish like rain — even to destroy like lightning), I also give power to the other (the object) to affect me. So that other is as alive as I am (in this sense). We are in a moral relationship that gives life meaning. That is why I know the bears who are my most intimate and daily family do help me be/have whatever is good in who I am and what I do. It is the relationship that makes us who we are (that makes me who I am). And I say that even though I have a strong tendency to want to say/feel I am I, alone. That fraction of truth lives inside the larger truth of relationships.
MM: Most of humanity is ignorant for not seeing what is around them. I hear the rocks and trees. Wish me well and tell me I am one of them, one of the silent ones who has now been given a voice, and that I must come out of hiding to protect others without voices: in my case I tend to help give voice to persons with Alzheimer’s disease. My washer and dryer speak to me, and I painted a face on them and gave them names and make sure I don’t overwork them. When I worked in a copy shop I could produce more copies than any other employee. Yes, I could understand the physics of the machines and their limitations from overheating etc. But for me the machines were talking to me and I talked back regularly.
I was raised by my Siamese cat I could understand her language better than the human language, and so I spoke Siamese before I spoke English, and I thought the cat was my real mother because I could understand her more than I could understand humans. I speak to children, babies, machines, rocks and trees as if they can hear me and they know what I am talking about. That is why my success with Alzheimer’s patients is so high: I treat them with such great respect and assume they know what I am saying. And I wonder why the rest of the world is so ignorant as to treat others as stupid and dumb and things and animals so terribly because they are somehow less than us? Well I think that this is a very arrogant stance to think we are better or more alive than these others who very much have a soul.
Women From Another Planet, edited by Jean Kearns Miller
I’ve used this quote before but not here. I love it because when people see autistic people relating to objects, they think we inhabit a bare, dead, empty world because that’s the way they see objects. But it’s not always how we see objects.
I think of all my autistic traits, this is one of the ones that I’ve gotten some of the most degrading shit for. I mean for traits I actually have, rather than ones people imagine up in their heads.
People, especially online, want so very badly to convince me that the world around me is dead, that they do the verbal equivalent of grabbing my shoulders, shaking me really hard, and screaming in my face that essentially I’m such an idiot that I can’t even understand such a basic “fact” about the world. Never mind how culture-specific this “fact” turns out to be, it still inspires a great deal of anger that I don’t conform to it. I don’t know why it makes them so angry, but it does.
That was one of the most common negative responses that I got to that video that went viral. “Water can’t interact with you, WATER CAN’T THINK!” “What you call interaction is just the laws of physics.” (And that’s different from what I’m saying, how?) I was stunned that of all the things I said they’d pick that one to argue with.
The second time I posted this quote on my blog, another autistic blogger posted what I strongly suspect was a direct response. It was all about how anthropomorphism (seeing human traits in nonhumans) is a cognitive error that humans are subject to, and how animism (what my post was apparently considered) was a form of anthropomorphism. There was a lot of condescension in it, and a lot of stuff that, whether the person was aware of it or not, ran something like “my culture, unlike ‘primitive’ cultures, knows how the world really works.” I found it pretty insulting but couldn’t find the words to respond. But here are some:
I don’t call my beliefs animism mostly because I’m afraid of the mental widgets that go with anything ending in ism as a belief system. When I talk about something being alive, I’m not attributing any human qualities to it at all. I’m talking about things as themselves. As what they are. And their own real features are their aliveness. So is all the stuff in between them, the way things interact with each other. To me that is alive, and to me what’s strange is the way most humans consider most things dead and other organisms sort of half-dead or more, compared to humans. It doesn’t seem accurate at all, and it does often seem rather destructive.
But what do I know, I’m just an autistic person who’s too much of an idiot to understand how the world works no matter how much anyone shakes me and screams the truth at me. Gah.