Ableism and CF

At various points in my life, I have faced ableist comments or reactions to my cystic fibrosis treatments, which have greatly affected me. I hope this blog post makes people more aware of the language they use toward people with chronic illnesses.

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William Ryan
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Ableism is sometimes subtle.

Story time: The summer after I graduated college, I was an intern at Hoboken City Hall in New Jersey. I had a job set up in September and needed 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 trip (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 a presence behind 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 someone is 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 “tsk” sound.

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 hard, so why do people make it harder?

Ableism also isn't subtle. Sometimes, you're too young to know what you're dealing with or facing.

I had a hard time in 6th, 7th, and 8th grades. 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 with an adult.

Recently, I was featured on the Cystic Fibrosis Foundation's Instagram doing my TOBI® nebulizer. That medicine, as much as it has dramatically improved my life, also caused one of the more defining moments of my life.

That summer of 2006, I enrolled in a program for young boys who were on the precipice of graduating 8th grade. 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 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 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 cachet 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, referring to the cigarette brand.

I kept trying to read but couldn't finish because I was coughing a lot and well, my voice. He told me to leave the room and forget about reading any more. I watched him shake his head and laugh to himself as I walked out. When I closed the door, I heard laughter. Now, I'm not 100% sure it was all about me, but I was, at a minimum, 99% sure 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. I was looking to go to that school 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 hired 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?” It's not fun. The fact that we have to rise above our disease on top of dealing with insurance, treatments, lack of energy, lack of institutional/government support, and inept pharmacies, are enough to deal with. Don't make it harder.

I'm not trying to pity-party myself. My life is good now. I'm married and I'm healthy. My wife 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.

I just want people to be more considerate and aware of the language they use and how they interact with us. I'm not going to say please. I shouldn't have to.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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William is an adult with cystic fibrosis. He lives in New Jersey with his wife and their two dogs, Otis and Ruby. He has been doing stand-up comedy for several years now. You can find him on Instagram

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