Content: This post includes traumatic experiences of ableism, though not depicted in a very literal sense.
I’m in a pharmacy to get my meds. It’s crowded and warm, but I’ve taken my baby’s outdoor clothes off and placed them on my hip. My baby is still close to crying, despite having been fed, changed and had a nap recently. I’m frustrated and feel stressed out because of it. Why can’t you be okay? I wonder. But the thing is, I know why you aren’t okay. It’s too noisy, too smelly, too many people moving around. It’s too much of everything.
I know it, but it can’t be true. It’s the same experience that I’ve had all of my life. The sense that it’s too much of everything, it’s obvious but at the same time not true. I’m close to panicking because I’ve realized that you are like me in the sense that according to other people isn’t supposed to exist. This is not how you are supposed to be a human being. This is not possible.
Still, it’s so terribly authentic. I feel your reactions. I can read you. I understand you way too well.
Time passes. I learn that you are autistic. I’m forced to be confronted with myself and this time, I can’t hide anymore. This time I start to deal with everything that I’ve been resisting for all of my life. I process information differently than people are expected to do and it affects everything that is me.
I am slowly learning about myself because I have to, but at the same time I have to put myself on hold. It’s a terribly contradictory process but it’s the only way I see possible for several years. I have to put myself on hold in the middle of an identity crisis, because I have to fight for my kid’s right to health, accessibility and a good life. I fight and I learn. I learn what accessibility means for autistic people and I learn what autistic actually means. Actually Autistic, the twitter hashtag that leads med to sources of information that turn my world around.
I read what autistic people have written and as I acquire a new vocabulary, some of my chaotic sense of myself is starting to make sense. My focus is always my kid but in the background, I’m getting hints of myself.
I build a new life for my kid. I use everything that autistic people have taught me and demand changes in a lot of areas. I learn how to communicate in more accessible ways and how to organize our life in a new way, more suitable to my child’s needs. It works. It isn’t easy but it happens. My kid feels better and gets a better life. My kid starts experience joy and well-being again. Then I realize that the struggle will never be over, because ableism is everywhere and accessibility is something that only comes through struggle. It should be included under the term “human rights” but in most cases, it isn’t.
Then I collapse. My identity crisis can’t wait anymore. I don’t have any energy left to be angry and now, the words that have been ingrained are starting to really hurt. Slowly, I’ve taken the first steps to learn how to be me and to take good care of my child but it becomes clear that the world isn’t only inaccessible because a lack of knowledge. I find out that you actually detest us. You see us as not really human, as something wrong and inferior. Now, the second struggle starts.
This is a story without an ending, because I don’t even know how to write the second chapter. I thought it was time to heal and move on but now, when I don’t have the energy to be angry and educate people anymore, I see your hatred. How will I ever be able to get passed the trauma of growing up autistic when so many people are reproducing this trauma, both to me and my kid?
You are, once again, telling me that my way of being a human being is wrong. That people like me and my child shouldn’t exist. You are telling me that people like me and my kid should accept, tolerate and not fight against the violence we’re subjected to. You are telling me that people like me and my child aren’t really completely human.
Ableism is real. Ableism can be traumatic and extremely hurtful. Ableism causes damage.
I still don’t know how to live in a world that hates me and my kid so badly.