Reflections on Having a Brother with Autism
The floor of the grocery store looks like glass, and every time he slams his body into it I think it’s going to break. Maybe if the floor swallows him people will stop staring. My brother Kara is five years old and has had his autism diagnosis for three years. I am seven. I tell my mom I’ll grab the rest of the groceries while she holds my brother. Everybody in the store is watching us, but nobody is helping. I repeat ‘paper towels, pasta, bread,’ ‘paper towels, pasta, bread,’ ‘paper towels, pasta, bread.’ I proceed to walk past the paper towels, pasta, and bread. I hide behind the wall of neatly stacked soups pressing my palms against the floor trying not to cry and add more stress to the situation. I kept thinking this is not what a good sister does. My mom finds me, weak. As usual, she is forced to pick up the pieces of her children.
Her hair’s a mess, but my brother is sitting in the grocery cart, no longer screaming. I can still hear it though, like the residual ringing after a really loud concert. The sound was bouncing around the inside of my head. We walked out of the store, but I never felt good at loving him after that. I hated how angry I was. I knew he couldn’t control it, but I hated everyone's eyes on him, my family, me. I still hate myself for resenting the things he can’t control. I think this was one of the first times I acknowledged that it was hard. We were trying to do something simple and fast like grocery shop and it should have been easy but it wasn’t.
I think it’s harder for my mom to have a son with autism than it is for me to have a brother with autism. When parents decide to start a family, they don’t dream of having children with disabilities. They carry preconceived notions of what a family should look like, and I know my mom mourns the milestones my brother never achieves. He will never graduate high school, go to university, learn to drive, vote, start a family, or live on his own. The distinction is exacerbated for my mom because Kara is a twin, and our brother Bass is typically developing. Bass just sent off his University of California college applications and is preparing for his IB finals while Kara is not. My mom wants Kara to be happy and she does everything she can for him. However, these milestones that mark typically developing people are things Kara will never go through and there's something my mom finds inherently sad about that. I don’t mourn these milestones. I, at two years old, had no idea what a brother was supposed to be. I think we learn what the role of a sibling is when we have one and I had Kara and Bass. They were different, but they were both equally my brothers and both equally my models for what a sibling should be. I think often the way I felt was more of a reaction to everything happening around me. The shock, pity, and shame that strangers projected onto the situation as they marveled at what they thought of as the catastrophe that was my family just made whatever that was happening with Kara so much worse.
I never looked at my brother as disabled until people told me he was. They didn’t literally tell me, but I could see through their reactions. When I invited friends over, the fear in their eyes when Kara jumped around the house doing a number of melodic screeches that my family was completely unfazed by, or the way being in public inherently meant all eyes were on us, more specifically Kara. As a kid, I felt like I was supposed to feel bad for the way my brother behaved. Not until I was older did I really make peace with this, and I don’t think one thing allowed me to reconcile this. I think with age I started caring less what other people thought, and I kind of had to realize that people are bullshit. They’re ignorant and they’re rude. The alternative they were suggesting by complaining about my brother's presence, and staring in utter shock was to essentially hide Kara away.
The degree of invisibility which people with disability are forced to exist in is unbearable. There are beautiful things about Kara that I wish people could see. When he laughs I can’t help but smile. There’s this openness and trust in his eyes that I’ve never seen in anyone else, and when he jumps and screams with joy there isn’t anything you can or would want to do to make him stop. I’ve also learned from experiences with my brother that compassion can be difficult to find. Over the summer my family had to make regular trips to Johns Hopkins Hospital in Baltimore for Kara. At one of our appointments, my mom and I were walking down the hallway holding Kara’s hands. Kara is doing his usual little jumps and verbal stimming, but he’s in a good mood because he knows he’s with mom and Ami. As we are walking down the hallway a woman is standing at a counter speaking to a receptionist with her maybe 10-year-old son. As we approach them this woman grabs her son and pulls him close to her and away from us, as if we were going to be an immediate threat to this woman and her son's livelihood. I turn slightly as we passed them and in a raised voice I looked her in the eye and said: “Don’t be a cunt.” After, my mom suggested to me that I go smoke a cigarette, and when I was outside I felt conflicted. I felt guilty for snapping at that woman, but I was so tired and Kara wasn’t doing anything. Everything about what that woman did felt so unnatural and unfair. It felt like no matter what we were always going to be the freaks. I think Kara is just as worthy of having a voice, and presence in society as any typically developing kid. I guess I’m just not at the point where I have patience for people who don’t.
