Hannah’s Sister
Hi, I’m Reese Feda. Hannah Fox’s sister. I’ve always had “Hannah Fox’s sister” tacked on like a hyphenated surname. It probably didn’t help that I was homeschooled and therefore rarely seen outside of supporting my sister. Our pediatrician called me Hannah’s sister almost exclusively. He thought I was recently adopted on more than one occasion because he kept forgetting about me. I guess I wasn’t special enough to stay on Dr. Tuan’s radar.
The added name bothered me so much as a kid. I was my own person, dammit. I had my own interests, friends, and identity, but I was raised by the general public to feel guilty for wanting those things acknowledged. I was Hannah’s sister, and apparently that was supposed to be the most interesting thing about me. I think the people who found my relationship to Hannah fascinating probably also thought the most interesting thing about Hannah was that she has Down syndrome, as if she doesn’t leave horrifying plates smeared with barbecue sauce, ketchup, and mayo in my sink overnight. Hannah, what were you eating and when?
“Yep, and I even have a name, too,” is how I usually responded. It was a little bitchy, like me. When you’re a kid, everything becomes a teachable moment. Random adults would let me know exactly how “lucky” I am to have Hannah in my life and how I should “embrace my sister.” These speeches droned on like I didn’t learn how to wash Hannah’s hair the same day I learned to wash my own. That random adult probably hadn’t heard seven-year-old me ask my ten-year-old sister what she might want to eat on the way to the restaurant so it would be easier to help her order.
Maybe it’s possible to want your own identity separate from your disabled sibling, and being denied that set me up for a lifetime of guilt. I know this is her reality. It’s our reality. Every accomplishment and milestone in my own life has felt like a step towards abandoning her.
The speeches and denial of identity never made me resent my sister, but they gave me complicated feelings. Even in my darkest moments, I never wished Hannah could change. I never wanted to wish away her disability. That idea only seemed to occur to people who carried their own assumptions about how I viewed the disabled person I shared a bunk bed with.
I wished Hannah had friends. So did my mom. That wish fueled plenty of tearful arguments whenever I wanted to go out. Hannah never had nightlife plans. Meanwhile, I spent every spare minute at the roller rink as soon as I had enough agency to choose where I spent my afternoons.
Girl Scouts felt like proof that things could be different. Hannah and I shared a troop with several kids who had disabilities, and we were all friends. For once, I wasn’t glued to Hannah, because I didn’t have to be. She was invited to sleepovers at Alicia’s house, and I never forgot how happy that made me. It felt like we were both allowed to be Alicia’s friend independently. But if Hannah didn’t have a particularly social weekend, my mom felt guilty. I felt guilty. Hannah would always need support, and realizing that so young may be part of why it took me so long to recover from being known primarily as Hannah’s sister.
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Being a kid whose older sister is disabled means learning and accepting that you are more than likely going to play a role in her long-term care. Especially after your parents die. Isn’t that a fun thing to think about as a kid? Suggesting at Crafton park to a kid you’ve never met that you’ll be “Hannah’s care person” when you’re playing house? Because of course, if you’re a play-adult, that means your play-parents have passed on, and now you’re play-power of attorney.
I went to a support group for kiddos with siblings who have Downs. I went twice. I hated it because no one was negative and that’s what I wanted more than anything. I wanted to observe a shred of resentment from someone else to feel seen. I wanted the support of someone who hated being “Ryan’s brother” despite how much they love Ryan. No one ever shared anything like that, and neither did I. Maybe we’d all been taught not to. I still wonder when I drive past that office building who I would’ve connected with had I said what was on my mind during those meetings. How could that have changed me?
The recovery took a while. I moved to Florida and did what I deemed as “actually abandoning” her. Most people called it going to film school. Growing up. Something I was apparently allowed to do as long as I also felt really bad about it. Don’t worry, I did. At one point, I wondered whether being one of the siblings responsible for supporting Hannah was something I still wanted. This train of thought nauseated me and certainly was unspeakable. Hell, I’m only speaking of it now because I’ve moved past it. I had wished for anyone to tell me they’d felt it, too. I eventually confided this in my mom and of course it broke her heart, but “there’s six siblings, Hannah will be okay.”
I think part of me knew I was fully bluffing and there wasn’t an ounce of regret in being an active carer in Hannah’s life. I think that same part of me wanted to know if I could have the autonomy if I wanted it. If I could be Reese. If I could share to others that I had a sister on my own terms. I wanted Hannah to be Reese’s sister. No one ever told me it would happen one day. They just shamed me for wanting a reality where I was Reese and she was Hannah.
I’m 24 now. I started journaling these ideas for this essay when I was 22. I’ve spent about two years unpacking what it meant to be Hannah’s sister as a kid. It was only a few months ago that I noticed life isn’t like that anymore.
I work in direct support for disabled adults now, which has its own complicated feelings I could write just as long of an essay about. My sister attends the day program I work at. Hannah is Reese’s sister and I’m Hannah’s sister. It wasn’t like that before. I have my own friends now that have independent relationships with Hannah.
I’m accepting and ready and excited to take on the adventure of sharing my life with Hannah whenever that day comes. I’ve always pictured Hannah in my future, even in my brief and rebellious questioning. I think I could’ve accepted it sooner had people let me feel the complexity of disabled love.
I hope a sibling reads this sometime. I don’t need them to focus on the conclusion where I feel better because they’ll get there. I just want them to know their pain is real, and I know in my heart of hearts that you don’t love your sibling any less for having your own interests. You and your sibling are both allowed to exist separately. Apparently the abled siblings have been doing that the whole time, buddy.
