Ableism Awareness During the Month of CF Awareness
By: William Ryan
Tags: New Jersey, Cystic Fibrosis, Ableism, Ableist

Ableism is sometimes subtle.

Story time: the summer after I graduated college, I was an intern at Hoboken City Hall. I had a job set up in September and need something else to do a few days out of the week besides going to open mics in Manhattan and Brooklyn. One day, I decided to make the travel (a six block walk) to my favorite pizzeria in Hoboken. If you’re from North Jersey, you know which pizzeria I’m talking about.

I sat down with my pepperoni slice and Diet Coke, but first I had to take my medicine. While taking out the pills I needed to take, I looked over my right shoulder as I could feel eyes darting at me. Lo and behold, there was a woman staring at me as I was going through my medicine.

That’s subtle. A stare, sometimes, is really subtle.

At the same time, I got it. It’s not often you see a young person take a lot of pills, especially by themselves. So, I’m sure she was taken for a loop. We’re all guilty of people watching, too. We’ve all done it.

What was weird was that she didn’t break her gaze. Usually, when people are caught people watching or staring, they’ll immediately look the other way. It’s the polite way to say, “I didn’t do it.” But this woman didn’t break her gaze.

She just kept staring. Then, she followed up with a head shake and a tisk.

Maybe five or six years before this, I would’ve said something. Maybe. I’m not so sure, but I’d like to think that when I was a teenager full of anger and adrenaline, minus brains, I would’ve said something. I didn’t. I actually froze up.

What followed was that I ate my pizza and left. I called my Mom and just vented my frustration. My life is already made harder so, why do people make it harder?

Ableism, also, isn’t subtle. It’s very direct. Sometimes, you’re too young to know what you’re dealing with or facing.

I had a hard time in 6th, 7th grade, and 8th grade. I wasn’t popular. I wasn’t well liked. I can also admit, I was really annoying and defensive. I just wanted to be a regular kid, but I wasn’t. The annoying and defensive parts of me that manifested around 2005, mellowed out by the time I graduated college.

Since then, I’ve done some reflection as to why I was the way I was. The summer of 2006 wasn’t the first time I faced ableism. However, there’s a huge difference when it comes from a peer compared to an adult. The trauma is heavier.

Recently, I was featured on the Cystic Fibrosis Foundation’s Instagram doing my Tobi nebulizer. That medicine, as much as its dramatically improved my life, also caused one of the more defining moments of my life.

That summer, I enrolled in a summer program for young boys who were on the precipice of graduating 8th grade. That summer, my lung function was the worst it had been in years and, before my doctor wanted to admit me into St. Vincent’s Hospital, she suggested I do the Tobi nebulizer.

One of the side effects of the Tobi is that your voice gets raspy and, in some cases, you can lose it for a while. Combine this with puberty and you can imagine my lack of desire to speak…or read…or do anything that required me to speak.

Well, I didn’t have a choice. In an English class that wasn’t taught by an actual teacher at the school, but someone who had enough cache to spend their summers moonlighting as a teacher, I was chosen to read out loud. I remember it was a short story by Langston Hughes.

So, here I am, standing in front of this class of people I barely knew. The second I opened my mouth to start reading, I started coughing. That’s nothing abnormal with CF. Then my voice, raspy as all hell, started to crack. Then I started coughing again

The guy looked at me and said, “Bro, do you smoke? Jesus Christ, you must smoke a pack of cigs a day or something!” The whole class started laughing. I forced myself to nervously laugh along. I told him it’s a medicine I’m taking that causes it to happen.

“Okay, Winston,” he said.

I kept trying to read, but couldn’t finish on account I was coughing a lot and well, my voice. He told me to leave and forget about it. I watched him shake his head and laugh to himself. When I closed the door, I heard laughter. Now, I’m not 100% sure it was about me, but I was at a minimum of 99% it was. I went to the bathroom and cried. I didn’t feel like I could tell anyone that an adult, affiliated with the school, made me feel this way. He wasn’t a legitimate teacher and I was looking to go there in the Fall of 2007.

I’m glad I was right that this one guy wasn’t an accurate representation of the school, its values, or the employees they hire(d) to be teachers. There’s a difference between making someone feel bad about themselves and getting a kid to laugh at themselves. It’s not a thin line.

There are a lot of other instances of ableism I’ve faced. I know other people with CF have probably faced questions/comments like “Are you going to die young?/You’re going to die young,” or “Why are you so skinny?” or “What’s with that cough?” etc. It’s not fun. The fact that we have to rise above our disease on top of dealing with insurance, treatments, having barely any energy to do anything, lack of institutional/government support, dealing with pharmacies that are inept, is enough to deal with. Don’t make it harder.

I’m not trying to pity party myself, by the way. My life is good now. I’m married and I’m healthy. She and I have two great dogs (the best in the world). I have great family and friend support. If you told me 10 years ago what my life would be like, I’d laugh. Here I am, though.

This year, during this month of cystic fibrosis awareness, be more considerate and aware of the language/verbiage you use and how you interact with us. I’m not going to say please. I shouldn’t have to.