Those who know me know that I don’t dwell on the things I can’t do. However, when the world makes it nearly impossible to do some of the things I CAN do, that is when I get frustrated. Here are some of those things…
I’ll start with the one that made me think about this topic again. 12 South Farmers Market Peach Fest. First, you have to understand that I love peaches, perhaps more than any other person on the planet. I was born in a state second only to California in peach production—and it may not be the state you think. I love fresh peach pie on my birthday (or any time!), peaches and oatmeal for breakfast, and peaches served almost any way. You would think having a Peach Fest in a park not far from my home today would be cause for celebration. You would be wrong. You see, I went to the first Peach Fest in 2015 with my mother and two friends. We had a good time. My mom and I returned the following year minutes after opening—only to find the handicap spaces full with people parked illegally and no other options for parking our oversized van. So back home we went. Getting out is no easy effort. It takes planning and can test my endurance. So to go back home disappointed and empty-handed was…well, there are no words. At least I had none left to say. It was a quiet trip home.
Since then I have tried sending emails to the organizers, posted on their social media, sent them private messages. I have NEVER received even one response. The most kindness I received was from a vendor who makes wonderful pies, who expressed her sympathy and said that she hopes to open her own pie shop and make it accessible to people with disabilities. Our world truly needs more people like this.
Today is Peach Fest AGAIN, and I’m not going. Fortunately there is an accessible fruit and vegetable market down the street that has wonderful peaches. We may get some of them and have our own celebration. (Thanks to a sweet friend for letting me know they carry peaches from my favorite state.)
Now for the issue that truly tugged at my heart for a long time. I can handle stares from people because I look different. I don’t mind answering questions about my disability because that’s how people learn. The one thing you don’t get warned about is the silent and unprovable discrimination you encounter. I was fortunate to have parents who valued education. I was fortunate to have a university in my city that made numerous accommodations so that I could go to classes, a mom who drove me back and forth each day and spent more time in the library than I did searching for books I needed for papers I needed to write. After six years, I had a graduate degree and was ready to take on the world. Well, STOP. You see, I was unprepared for a world that didn’t look past my disability. I thought teaching would be a field where people would be more open in addition to being something well-suited to my skills. I had interviews. I worked as a substitute and didn’t get calls back to any of the schools except the one I attended, as some of the teachers knew me and what I was capable of. It was so discouraging because I always knew one thing: I wanted to work very badly, and that should have been enough. I became a part-time substitute teacher for the school down the road and a part-time tutor, as self-employment was my best and only apparent option. I enjoyed the years I spent teaching. In hindsight, all the more because my disability progressed and I can no longer do those things. (Honestly, the thought that one day I might not be able to work never occurred to me.)
Looking back, I don’t think any of the people I encountered purposefully treated me different because of my disability. So part of my purpose in writing this is to ask you, my readers, to be open to the fact that people with disabilities do have something valuable to contribute to the word. We want to be part of it. If you encounter a person with a disability, know they don’t want to be treated as an inspiration or something extra special. They just want to be given the same opportunities as everyone else. We just sometimes need a little extra help from you to get there, whether it’s an open mind or a willingness to see the things that unintentionally make our world a little smaller.
I've always believed there is a lot we can learn from others, and know that my viewpoint isn't the only one out there. As I'm about to turn 52, I'm sometimes more jaded than I was at an earlier age, and in others ways more content and sure of myself. I also know firsthand that the voices of people with disabilities aren't often heard because we are a silent minority sometimes dealing with health issues, social isolation, and other things that need our attention more than speaking up. So today, I'm turning my blog over to other voices.
The first voice I want to bring is that of Oliver Collins, who, like me, was born with the genetic condition fibrodysplasia ossifcans progressiva. He unfortunately passed away on April 21, 2021, due to a catastrophic brain injury suffered as a result of a fall from his wheelchair. I asked his mother Julie to pick one of her favorite pieces of writing from his social media postings. Ollie had recently started posting often to raise awareness of people with disabilities on Instagram and on his own blog. He also had a story posted on Love What Matters. In a strange turn of events, I had just told my own mother that she should read what he wrote there shortly before I came to the computer and learned he had died. Thought Ollie is no longer with us, I want his words to live on.
Do I wonder sometimes what my life would be like without a disability? How different my life would be without limited movement or chronic pain? Of course I do, sometimes.
But then I stop and remind myself of a few things:
1. the challenges that have presented themselves because of my condition have allowed me to cultivate quite inventive problem solving skills, to overcome the many, varied obstacles I face in my everyday life.
2. facing these continual challenges has helped make me a very resilient person, who is determined to not let anything stop me from doing whatever I set my mind to.
3. I have had the benefit of developing a unique perspective in how I approach life and everything that comes along in it. Yes, there are a lot of difficulties. But having gone through what I have, I now have a special appreciation for finding happiness in the small things and in the little, everyday victories.
4. going through this has bought our family a special closeness that really comes through facing obstacles together, and we are all stronger because of this.
We often say "the grass is greener" [on the other side], and compare ourselves to others or what our lives could be. But just because our lives could have been different, that doesn’t necessarily mean it would have involved less challenges, or easier challenges, or been any better as a whole. Our lives are special, and need to be appreciated for how valuable/miraculous they each are.
I also wanted to highlight another young voice that is worth hearing. This is Erin, whom I first encountered when she was two years old and her family was attending a symposium of scientist, doctors, and other families who share my medical condition.
It’s funny how I used to hate putting my hair up in pony tails because I was so self conscious of my tiny shoulders. People used to comment on them, which made it even worse. I used to be so self-conscious of a lot of things, and now I try to embrace it all. Cute sweaters from Target make up for it, but all it really takes is for you to see the big picture. In the end, there are a lot more things people could be staring at me for, and there are a lot of other things I should be worrying about instead of my tiny shoulders. I was so insecure that I refused to put my hair up, but at the end of the day what’s really the point of hiding our insecurities? Pony tails are freaking awesome and they keep my hair out of my face—which besides looking super cute, is a perk. I took that away from myself and for what? Truth is, looking back on all the things I used to fit over in my head seems silly now. Maybe it’s because my situation changed and there are more significant flaws that I find myself nitpicking over in my head. Who knows? There might be small things that irk you and make you feel insecure about yourself, and that’s okay. But years from now you might look back and think “I’ve changed and grown and I’ve embraced that part of myself and all it took was for me to see the bigger picture".
Now that Erin has shared her favorite post, I'll share one of my favorite things that she has written. I hope you will check it out.
P.S. I took myself so seriously in my twenties. I'm glad Erin has realized that humor helps!
Hello. My name is Sharon Kantanie. I'm 52 years old. I have an extremely rare disease called fibrodysplasia ossificans progressiva. I believe in courage, kindness, and other things. Welcome to my little home on the world wide web where I hope to share information on the Kindness Matters Challenge, my life, and the things that matter most to me.