It Starts with Chicken and Rice:
A Tale of Grief, Pride, and Disability

I’ve been thinking about disability a lot lately. You might have seen my tweets yesterday about the exclusion of disability in broader diversity discussions. That’s one reason why.

And I’ll be one of the contributors to Kelly Jensen’s YA feminist anthology, FEMINISM FOR THE REAL WORLD, for which I’ve written an essay about the ways my disability affected my sexuality growing up. That’s another reason.

The biggest reason why, though, has nothing to do with the YA community or feminism or diversity. Or it has everything to do with them, but it starts with a plate of chicken and rice.

*

Back in June, I was eating dinner and found I couldn’t swallow. Not like when you’ve got a little cold and your throat feels a bit tight and sore. Not even like when you’ve got a big cold and your throat’s filled with phlegm and other horrors. This felt like my body had forgotten how swallowing worked, as if I’d never known how to get food from point A to point B. It was terrifying, but I figured it was a weird fluke.

It happened again the next day. And the next. And the next.

I went to the doctor. “Your tonsils are huge. Have some steroids and antibiotics.” I had them. I still couldn’t swallow. And the more I tried to eat, the more it hurt. I’d take the tiniest of bites of mashed potatoes—just enough to cover the tip of one tine on my fork—and cough for a full minute after swallowing.

I went back to the doctor. “It might be acid reflux. Have some Prilosec.” I had some. I still couldn’t swallow. And now my throat felt like it was closing up all the time. I sucked on cough drop after cough drop hoping it might soothe whatever was happening in there. It did, for a few minutes anyway. I still couldn’t swallow.

I was so hungry.

I was so scared.

I went to the hospital. They did a CT scan and a swallow study. “There’s nothing mechanically wrong. You can swallow, it’s just taking a lot of effort.” What does that mean? we asked.

“Your muscles have weakened. They’re too weak to get the food down.”

*

I should probably back up. Context is everything, right? I was born with a disease called Spinal Muscular Atrophy Type III. The long and short of it is my muscles started out weak and get weaker as time goes on. The last big drop in function was when I was six and I stopped walking. I’ve been pretty stable since my pre-teen years, though. Over a decade where I didn’t notice any extra weakness.

Not until that night in June.

Turns out the muscles in my throat decided to kick things up a notch—or down one, I guess, depending on how you look at it. But because my body always has to be a special little snowflake, it did things backwards. Usually when your throat muscles weaken, you have trouble with liquids first. Not me! I could do liquids fine. The doctors were all somewhat puzzled, but it didn’t really matter. We’d figured out the mystery. I’d live.

I went home. I saw a nutritionist. I started an all-liquid diet. I got really creative with smoothies and soups. I ate better than I ever had before—all fruits, veggies, and tofu. I became an accidental vegetarian. I had more energy and fewer stomachaches. I felt healthier.

I missed food. I cried when my parents made burgers every Sunday night, the smell infecting the whole house. I bit the inside of my cheek at the mall when I had only one option for lunch: Smoothie King. I realized I’d never have Thanksgiving turkey again, or crepes when my best friend visited, or Almond Joys on sale after Halloween.

I worried. If my throat had gotten that weak that fast, what would go next? Maybe we’d been wrong—maybe I wouldn’t live. Maybe my body was shutting down and food was the first thing jettisoned. Maybe I’d be dead soon. Maybe they were wrong all those years ago when they said, “It’s not fatal. She should have a normal lifespan.” I’d known people who’d died from SMA. So many people. Maybe I was going to be one of them soon. Maybe there’d be a Facebook post from my parents, and dozens of friends from high school I haven’t talked to in years would comment with “:( :(” and “OH NO!” and “So sorry for your loss” and “We’ll miss her”.

I went to a therapist. She said I was grieving. That I’d lost something important and I’d have to deal with all that that meant. She was talking about food. I was talking about something even more.

*

I didn’t hear the term “disability pride” until well into college. It may have even been grad school. (Those years tend to blur together.) I’d never been proud to be disabled. I’d gotten to a point where I wasn’t ashamed of it either, but it seemed strange to put disability right next to pride, as though they belonged together.

I started reading about disability rights and disability pride. I started listening to other disabled folks. I started thinking about ableism and the ways I’d experienced it over the years. I started noticing discrimination and microaggressions and had the language to label them as such. I started questioning why it seemed so absurd to be proud of my body, to be proud of me.

I became proud. Proud to be disabled.

I spoke more—in person and online—about disability. People listened. I got involved in the YA community and found other disabled people, people who were talking about disability and pushing for change. I joined them. I became known for my voice, for my disability, and (I hoped) for my pride.

It took years, but “disabled and proud” became one of the foundational parts of my identity.

And one night in June was all it took to start dismantling it.

*

Even though I hadn’t been proud of it growing up, I’d never felt like my disability was much of a burden. I couldn’t walk, sure, but that was about the extent of it. (That’s a gross oversimplification, but it’ll do.) Even as I was thinking back on my childhood, learning about social justice and marginalization, I found that the majority of the hardships I’d faced were because of ableism, not my disability itself.

But now I couldn’t swallow solid food. Now I’d lost something. Now my body was the one I was fighting, not the world.

It’s so much easier to rail against injustice when you’re pointing at a system, at an institution, at history, than when you’re pointing at yourself. When the injustice isn’t an act of malice or ignorance, isn’t even an act at all. When it’s not injustice. When it’s just one of those things.

My therapist was right when she said I’d have to grieve the loss of food. I did. I still do. But I also had to find a way to reconcile that disability pride I’d fought so hard for with my body’s betrayal.

Was I proud? Did this body make me proud still? Did I want it to?

*

I debated writing all this for a long time. I worried people would read it and pity me. That the only responses would be “I’m so sorry” and “you’re so brave” and “how terrible”. I imagined abled people reading this and having disabled = broken reinforced in their heads, on a subconscious level maybe, but reinforced nonetheless.

But what I eventually realized is just because I feel broken right now doesn’t mean I am. And it doesn’t give anyone else the right to label me as such.

Just because I feel broken right now doesn’t mean I can’t love myself. It doesn’t mean I can’t be proud, even if that pride is a bit less shiny and a bit more fragile.

I feel like my body’s betrayed me. I feel broken. I’ve lost something important to me. I’m grieving.

And I’m still proud to be disabled.