This will not be nice. This post will reveal a side of me that I’m deeply ashamed of.
A person that I know is going through a divorce. She and her partner are both agreeing on that it’s what they want and there is no big drama, but of course it’s still hard. A lot of practical stuff with moving, legal stuff, emotional stuff and in the middle of it having to be strong and supportive for the children involved. I don’t for a second believe that it’s a walk in the park.
And still, I envy her. Because she can have a divorce. She can take care of herself and her children financially and practically. She doesn’t have to stay in a relationship she’s unhappy with. She doesn’t have to choose between her children or leaving an unhappy relationship.
I’m not saying I want to break up with my partner. Considering if this is a relationship I want to be in or not is not an option. I don’t have a choice so I fight to not ask myself that question.
It’s called oppression. It’s called ableism.
Content Notion: This post includes internalized ableism.
I’m unpacking. Piece by piece I’m exploring myself. My autistic self. Experiencing myself as an Actually Autistic person. It’s hard work, but it’s necessary. Around a year ago I reached a point where I could finally start the unpacking and as painful as this year has been, it feels like the only way to ever make peace with myself.
Unpacking means reliving a lot of very painful experiences. On one hand, I’m starting to understand that many situations in my childhood were very hard for me. When I think about the times I couldn’t stay in my classroom and escaped in panic without even trying to conceal it, I’m still ashamed, but I also feel some sense of compassion for my eleven-year-old self. I can still feel what I felt back then, all the painful sensations that went through me and how my thoughts crashed into each other, but now I have words like meltdown and sensory overload to use instead of the contemptuous words I was told back then.
On the other hand, there are so many words I still don’t have. It’s like I’m picking up familiar things from a suitcase, seeing them clearly in front of me without knowing what it is. My experiences are clear, both memories from my past as well as things that are happening to me now, but I don’t know what it’s called. This is contradictory, I know, but I’m talking about experiences that are crystal clear but messy and incomprehensible at the same time.
Sometimes when I read about other autistic people’s experiences I recognize myself and if I’m lucky, it gives me clarity. Somebody describes one of my unnamed experiences and suddenly – comprehension. It gives me words that alleviate my confusion and make it possible to grasp an experience that used to be elusive. It gives me a temporary peace of mind, but I have so much more to unpack and understand.
This is one of the problems with how autism generally is described by many professionals. Most of the times, it doesn’t give me any clarity at all and it certainly doesn’t center autistic experiences. The dehumanizing vocabulary that is often used is harmful and not contributing to self-understanding. Besides from the obvious problem that it’s condescending and reinforcing ableism, it’s also very often obscuring autistic experiences.
My search for the missing words will continue, and I really hope that one day I won’t be this confused and frustrated anymore.
The other night I realized that more and more often I’m daydreaming (or more truthfully, sobbing and wishing out of fear and desperation) of waking up from this nightmare. I imagine myself waking up with a pounding heart but as I realize that it was just a bad dream, I calm down. Unfortunately, that’s not going to happen. This nightmare is reality. This nightmare is my life.
Read that again.
I consider my life a nightmare.
Not because of the pain or the other symptoms. Not because of the limitations that my disabilities and conditions cause. Certainly not because I have a child with a disability (my child is a gift and one of the biggest parts of the happiness in my life). My life is a nightmare because of ableism. Because I live in a world that makes our lives a living hell. A nightmare.
Let’s go back to my daydreaming. What do I imagine that my life is like when I wake up and this horror is just a bad dream? First of all, my child is being respected for the person he is. He attends a school that’s treating him well, not trying to make him less autistic or hurting him by being inaccessible. This is the most important part but also the one that’s easiest to describe.
Then what? That was about my child, but what’s my life like in my daydream? Honestly, this is too hard to even try to write about, because spelling it out will make me face how unhappy I am with a lot of things. Therefore, I won’t write about what I really, really, really wish for. I can tell you as much as for me to not consider my life a nightmare anymore, I will have to have bodily anatomy. In my daydream, there’s no threat of having to undergo medical testing and examinations that will cause me harm. I have the right to say no without losing my financial support. Nobody will have the power to force me into medical procedures that will harm me.
That’s as much as I’m ready to display for now. To be continued, I hope.
I listened to one of your songs again today. I’m truly so sorry about what happened. You shared your songs with me and all I gave you was silence. You asked me to share something I had written, bur I never did. I wanted to let you in so badly but I didn’t. I couldn’t.
You were inhaling sand and I did nothing to give you oxygen, besides from letting you go.
Earlier I wrote that I won’t mourn forever, now I’m not so sure. I’m stuck in my mourning, and I think one of the reasons is that I don’t share it. There are a number of reasons for this, for instance I lose my ability to shift focus when I’m upset so I’m incapable of participating in a dialogue. Sometimes I can write (or even talk) or I can read (or even listen), but I can’t switch rapidly back and forth in the way that a dialogue usually requires.
The other reason is about erasure and my desire to be comforted. My longing for consolation is a deep, intense, burning part of me. I’ve spent years in therapy trying to learn to allow myself to feel sad and receive comfort from other people. I’ve tried so many times. Most of the times I ended up thinking that there was something fundamentally wrong with me. There have been a few exceptions, but most of the times it’s like my reasons for being sad are incomprehensible to other people. The friend or partner I’ve tried to confide in has started to comfort me about something else. Not to be mean or disrespectful, not to intentionally hurt me, but it did hurt me anyway. It hurt me deeply because my experiences were erased. Since this happened repeatedly, important parts of me were erased. I was erased.
As I wrote, there have been a few exceptions. I have a few friends in my life now who have given me the gift of truly relating to what I tell them. Not because they always share my experiences or magically read my thoughts, but somehow they can grasp what I try to communicate. But the fact that I have had a few different experiences over the last couple of years doesn’t change the 30 years of erasure before that. (Erasure that still happens in a lot of situations, just to be clear.) My default expectation is that my experiences will be dismissed, ignored or belittled. Combined with the cognitive difficulties of a dialogue, a lack of words for many of my experiences and a heavy load of shame, I can’t imagine what it’s like to feel comforted about the most painful parts of my mourning.
As much as I want to be comforted, as much as I probably need it, I don’t think I’m ready for it. It’s incredibly sad, but having my autistic experiences erased for so many years has made me incapable of receiving comfort. I really hope it will change.