19 The View from Outside the Window

HW

I needed help to shift from that tiny worldview to the big airplane view.

WHEN I WAS CLEANING OUT my room one day, I was immediately drawn to my old pile of journals. It was astonishing to remember how I used to be and feel. It’s sad to think about, but at one time I almost lost all of my creativity, particularly my ability to write, as a young adult. I had been writing for as long as I can remember, since childhood. As an Autistic person, writing came naturally to me and was an easy way to cope. Unfortunately, I was depressed a lot, and this really blocked my creative thinking. This was frightening to me and I began to self-censor everything I said or wrote. My old journals have huge gaps in them because I tore out everything that didn’t fit my standards.

My love of writing was unexpectedly rekindled when a teacher noticed my potential and told me that I was a great writer, which encouraged me to start writing again. I wish I could thank her for that, since it helped me get through one of the worst periods of my life. It was one of the few times I wrote and didn’t self-censor. It was one of the few times I didn’t feel like I had to please someone. The words escaped from inside of me in jumbles and messy writing. It was what I could never say to my parents or counselors.

Just like I struggled to see value in my writing, I didn’t fully accept that I was okay with being Autistic until later in life. I was extremely inexperienced with my new self-acceptance. It wasn’t always the best feeling because I didn’t know how to handle this kind of freedom. I guess even as a kid I knew that something would change, but I was scared. Out of fear and denial, I’d constantly rebuke people who thought I could be a leader, but in my prayers, written out in tiny cursive bubble writing, I prayed to be bolder so that I could one day lead. Some people really liked me exercising my freedom, but others absolutely hated it! I guess I was a bit too excited and outspoken.

While drinking coffee with one of my favorite professors recently, I thought about how much my worldview has shifted. The social model of disability talks about breaking down attitudinal and environmental barriers. How many people have their own internalized ableism and internal barriers? Ableism is the attitude that favors nondisabled people, and it is systemic. What are your own barriers? On the other side is the medical model: the belief that people have to be fixed and that doctors know best. I am all for medical care, but I don’t feel like I need to be fixed at all. Way too often we are told we have to be a certain way in order to comply with society. Too often, even people with disabilities begin to absorb the ableism around us.

I look forward to the day when I won’t have to light a candle for a life lost due to ableism, like I have to do every year now. I constantly have to tune my ears to catch ableism. And yes, ableism is as real as racism and sexism, but it is a kind of discrimination that sneaks up behind you, and somehow people view it as acceptable. Like cigarette smoke snaking around you, or some colorless gas, it is seductive in the way it works. It is appealing but toxic, and it can kill you internally. It can lead to horrible external things, including abuse, betrayal, and murder. It makes me heavy-hearted to think of how many examples Ican think of where this has happened. Words are powerful, so please don’t use discriminatory words. Please don’t add to the exchange of ableism.

For me, self-acceptance was similar to a feeling that one of my queer friends described about coming to terms with their sexuality. My friend said that instead of feeling like they were being forced “out of a closet” into the open without any help, it felt more like a change in perspective. It’s like when an airplane rises off the ground. Like going from seeing only your small world and thinking that every part of the world is exactly like yours until you leave your little corner. Leaving the tarmac, the plane starts soaring, and you look down from the window and see how tiny your little world really is. That’s what self-acceptance seemed like for me. It was that kind of a cathartic relief, realizing that my view from before was so limited and now being able to realize what life could be like.

Sometimes I wonder if that is how my parents felt when they realized I was Autistic . . . that a huge part of their lives shifted from one small view to looking out the window of a plane and seeing all the small patches of land underneath the sky. It’s kind of an overwhelming feeling, to be honest, and I fear that some people might even call it an identity crisis or a death sentence. I find it sad that some parents won’t embrace their child’s autism or, if the child is the one who can’t handle being Autistic, they choose to stay in their small world of familiarity in fear of what they might see outside the window of the airplane in their own life.

When I think back about my writing, I notice something. All the fictional characters I wrote about as a kid were what I wanted to be subconsciously even though I wasn’t aware at the time! I needed help to shift from that tiny worldview to the big airplane view in order to see out the window. Some people refuse to ever see out that window or even get on the airplane at all. To think that I almost was one of them! Today, I don’t think I could ever forgive myself if I had allowed fear to prevent me from getting on that plane. It gave me a whole new world perspective, and I would never trade the moment when identifying as capital “A” Autistic and capital “D” Disabled became part of my life. This is a source of pride for me. I know I’m more than Autistic, of course, but it is still important to me.1