loader from loading.io

Cam Wells - phaware® interview 457

I'm Aware That I'm Rare: the phaware® podcast

Release Date: 02/27/2024

Stroke survivor and journalist, Cam Wells, discusses his mission to change the way disability stories are portrayed in the media.

Cam also discusses his work in the disability community, including his involvement with the Italian Canadian HandiCapable Association, which provides sports and recreation opportunities for people with disabilities.

Cam believes that disabilities and rare conditions affect everyone in some way and advocates for inclusivity and respect. #RareDiseaseDay

My name is Cam Wells. I am a stroke survivor and I hold four diplomas from St. Clair College. After getting the first one, which is journalism, I came to realize there's a great imbalance in the way disability stories are typically portrayed in the media. Portrayed as either really bitter or really inspirational. You don't often see the middle ground. I figured after graduating, I could set myself the task of trying to change all that. I've been actually doing a show [Handi Link].  for 15 years now. As a person with a disability myself, I've come to appreciate that there are so many beautiful shades out there to be appreciated. I've actually been honored both locally and nationally. I'm a nominee for Canada's Disability Hall of Fame. God willing, I'll actually get it sometime.

I've interviewed everyone from a cast member of TV's Breaking Bad to a couple from Corner Gas, but really the best stories are the ones that come totally out of the blue. Like during the opening of the pandemic, there's a quadriplegic pilot, a friend of mine who had lost I think it was his home and his vehicle to a fire. The health restrictions didn't allow people to do very much, but this town got together and they said, "We want to rebuild for this guy. He's part of our community." So they took it upon themselves and did what they could to help him out.

I was your typical kid. I didn't know much about the world beyond just your typical kid. You go to school, you spend time with your friends and family. That was my world. September 29th, 1995, I was eating a can of frozen juice, I remember. I was at school having lunch and I thought I was having a brain freeze. Must've been the world's biggest brain freeze, because it resulted in a first round of neurosurgery and six days in a coma, which is I might add, the only time in my whole life I got enough sleep, but I couldn't move my left side.

For 35 days, I was in the hospital and went through various rehab procedures only to find that part of the anomaly in my brain had been left behind. They couldn't get it. I had what was essentially an experimental procedure at that point. I was the youngest kid they had ever done it on at this hospital. It wasn't available where I was, so thanks to a long and tedious insurance battle, ultimately, we were able to get what was called gamma knife surgery and successfully remove the anomaly.

I came back a different person. The truth is, I would not change it for anything. I basically discovered who and what I am spending time among people with disabilities and various rare conditions. In an academic sense, yeah, you can learn the medical model of this condition may be this or that, but you can't learn the strength factor. For every condition out there, there's always that one unaccountable person who's defied the odds. The best way of learning about such people, just spend time with them. Share a meal, share some time, tell them a bad joke, what have you.

Probably the biggest moment for me was... and I’m not real proud of this, but I chose entirely the wrong program my first year of college, entirely the wrong thing. I figured because I was working in a job related to the field, I'd be good at the academic side. I was not. I actually found myself academically dismissed from the college. Through various acts of misunderstanding, I was basically forced out and spent an entire summer begging to get back in. But when I found myself doing the correct field of study, something I could do, a journalism scholarship was granted to me by a disability group that I now work for. That's where I met Egidio Novelletto, a man who was advocating for his people.

I grew more and more fascinated by the work they were doing, and I started writing articles on the subject and even did a field placement doing public relations materials for them. I realized that so many stories are just not shared. You look at a traditional sports page and you'll see some great athletics, but every night of the week, there's disabilities athletics. There's people who medically complex. They're out there doing it. They're putting on a great show, playing a great game, but where is the representation of that?

Now, it was a long gap between my years in elementary school, which I was in when I had the stroke and my years in college, but the funny thing is the reporter who did the story on the experimental surgery I alluded to was actually later one of my professors. As a graduation gift, I gave her what may be the only surviving copy of that footage.

I became more and more fascinated by the world of disabilities, and since I was doing PR for them, I wasn't able to do anything with the radio station at the time, but the program director, she left the door open. She basically said, "If ever you want to do anything, come and pitch a show for us." Basically upon graduating, I went to them and I said, "Hey, can I do something on disability issues?" Well, the rest is history. However, I realized that there were others involved in similarly interested stuff.

I actually worked with a team in 2013 to release a guide for radio stations on accessibility. Some of the things people don't think about like adapting your physical space, or some of the language you use. Even things as simple as the lighting for people with seizure disorder. I'm coming to realize that I wasn't the only person who actually wanted to see the best in people, wanting to see them living up to their own strengths. It was really an eye-opening experience.

One thing I always have maintained, when a person with a disability gets up and they make toast, that is not inspirational per se. That is called breakfast. That is a very human thing. But really people with disabilities, they do what they do just to live the best life they can. That is the principal reason behind my work.

As a trained reporter, I love a good story. I love hearing tales of what society doesn't think is possible. I thrive on that. But yeah, in a way, owning it for myself is part of the process. One thing that I've shared any number of times, I had a childhood bully, horrible, horrible experience, I might add. He used to try and stick magnets to my leg to see if it was real, and as I do the show sometimes when I'm interviewing somebody working with younger kids, I think to myself, "I don't want anyone to have those feelings that I experienced in my own youth. I don't want anyone to ever ask the question, am I good enough?" Knowing that you're rare, knowing that you're unique is a way of owning it.

I have a friend, Daniel Brenner, great, great guy. He's actually a robbery survivor. He was shot as a child and witnessed several people in his family being essentially murdered in front of him. He was told he'd never walk again, but he picked up a guitar and he used a form of self-healing. He actually gets by just fine now. In fact, I have another friend named Renee who runs a music studio, and she was looking for a teacher, so I introduced them and now they're working together.

One of my primary roles in the disability community is working for the Italian Canadian HandiCapable Association, which is an organization that does sports and recreation for persons with disabilities. It's my honor to work alongside them as they provide things like yoga, tae kwon do, soccer, all manner of things for people with disabilities who might not necessarily have any other athletic opportunity. Fact is, when you're out there and you're an athlete with a disability or anything medically complex, you're not thinking about the factors that might hold you down. You're not thinking about somebody telling you you're not good enough or you'll never do that. You're just living in the moment and enjoying the game. The ICHA was founded by a man named Egidio Novelletto, whose son wasn't allowed to participate in a traditional soccer program, which was a very eye-opening experience for him. He decided to found a charity, and working with various levels of government, he was able to build a complex and establish something meaningful for persons with disabilities to be a part of. Normally, that's where it comes from. Having somebody personally connected, it's usually the gateway.

Truth is, when it comes to disabilities, rare conditions, they affect us all. There's a term I heard in my work once, not disabled yet, meaning we prepare terms of respect and inclusion. We're only making our own futures better in so much as we're all affected. If you pass 10 people in the street, somebody's got some factor that makes them unique. Somebody has a mental health concern or an emotional disability, or maybe somebody in a wheelchair.

One of my primary sources of information is NORD, the National Organization for Rare Disorders. I consult them on an almost weekly basis to reach out to disability and rare disease groups around the world. My thinking is if it's affecting one person here, it's affecting others out there. I figure it's a universal concept, or rather a series of universal concepts. Yeah, you can solve the problem for yourself at home. That's great, but if others around the world don't have the same access to medical information or don't have the same resources or even wherewithal to ask those questions...

A few years ago, I actually interviewed an accessible theater in China and I might add I had a very difficult time placing that call due to various satellite connections, but they actually have this great thing where they have a sign language interpreter in stage productions. However, they're an acknowledged character. They're part of the show. Are they providing a service for the audience? Sure they are, but they're actually included. It's shown me what the world really is, if that makes any sense. I've met people and learned things I never would have otherwise.

Honestly, one of the greatest people I ever knew, Dr. Marcia Rioux, she was the head of Disability Rights Promotion International, God rest her soul. She introduced me actually to one of the UN Representatives who was involved in writing some of the disability legislation that has now been embraced pretty much the world over.

The work I do, there is no end, honestly. It's a stepping stone, but it's incumbent on everyone to try and take that step forward. I always say on the air, it's not about an immediate cure, but it's about the work towards getting there and disability, rare conditions, they affect us all. Maybe you're not the one affected directly. Maybe you're friends with a caregiver, or maybe you just happen to have a friend of a friend. It's the degrees of separation.

You can't look at any family. You can't go back all the way or as far back as humanly possible and not find some factor that makes a person unique or rare. As we go, we gain understanding. Look at things like chronic fatigue syndrome. That's a big one. 20 years ago, doctors would argue, "No, that's not a thing. You're just getting old. Just go home, get some sleep. These days, we look at it and we recognize this is a condition. It's about taking the next step forward. It's not about listening to anyone who says, "There is this glass ceiling. This is as far as you can go." Progress is built on the idea that a person will test it for themselves.

I had a professor once, a lady I actually have a lot of respect for now who told me it was physically impossible for me to pass some speed drills in my college days, because I only type with one finger. My exact response, "Watch me." And I got through it. There's one story I would like to share as a shout-out to some of the people that I've had the pleasure of meeting over the years. You never know who's going to be connected to who, so keeping an open mind and supporting others.

27 years prior to this, I remember there was a cartoon I loved watching. After the stroke, it was part of my rehab. It was my one half-hour during the week that I didn't have to think about the rehab or the pain. An organization I worked with provided some promotion for Easterseals. They happened to have two of the voice actors from that show speaking at an event in Windsor. So I called in a favor, got photos with them, autographs, and just got to share a little bit of their story. After all those years, I was able to say, "Your show saved my life, so thank you for that." It was actually the 90s X-Men. I was a bit of a comic enthusiast. I actually got to meet Gambit and Rogue, nicest people in the world. They were so kind to me, I cannot stress that enough. But the fact that I had a chance to actually tell them what their work had meant to me.

It's important in any condition, any rare disease, just to acknowledge when somebody is there, when somebody does some good. Yeah, there's a lot of hardships people have to endure, but there's always support and if you find the right people and you show them that you appreciate what they do, it just stays with them.

My name is Cam Wells and I'm aware that I'm rare.

@RareDiseases @DRPI_global @EasterSeals @CJAMFM 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: [email protected]