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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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Perks and Excuses

Hello and welcome to another week at Humbly Courageous. I am so glad you are here!

Countless times throughout the course of my life, I have heard comments like, "you are so lucky, you get to sit this one out. I wish I had an excuse like you!". "Must be nice to be able to just sit and observe, lucky!" Among many others. I have also been accused of "using my disability as an excuse to get out of things". 

I never had a good comeback when people would say these things to me. I was always so shocked and caught off guard that I would just give a half smile and quiet laugh. I think that these comments had a really negative effect on how I viewed myself. I was hearing these comments starting at a very young age, like 5 or 6 years old. I didn't have the tools or knowledge to properly defend myself. I started to blame and question myself. I would think things like, "am I not pushing myself enough?", "am I lucky?, because I don't feel lucky", "was saying I couldn't physically do something using my disability as an excuse?"

That was the start of my self-blaming and self-loathing that would go on for years and years. I still hear comments like this from time to time. I would be lying if I didn't say they still affect me. Less so, but still I can catch myself getting wrapped up in false perceptions of me if I am not careful. 

At times, I feel like I am constantly pushing pushing pushing to still gain acceptance as a functional member of society. I do things that are borderline physically unsafe because I am trying to prove myself. To who? I am horrified at the thought that someone would perceive me as "lazy" .  But truthfully, who cares?! Even if someone does think that of me, I can't stop them. It doesn't really matter what they think. Their ignorance is not my reality. 

Of course, life experiences, aging and just learning over the course of nearly 50 years, I can now say and believe that. Not so easy as a young child or young adult facing these inaccurate and unsolicited comments. A good reminder that our words matter. What we say to others has lingering effects. Choose your words wisely, and please, never say any of the above comments to someone living with a disability. Just don’t.

If I never heard again what a great "perk" to living life with a disability the accessible parking is, it would  be too soon. UGH!! I'd give anything to park in the back of a parking lot and get some extra steps in for the day. Living life with a disability isn't erased by a good parking spot. Seriously. The backlash I receive as a "younger" looking person who parks in a disabled spot is certainly not worth the downright cruelty I have faced, or the physical hardships. Throughout the years my close friends and family have joked about this topic, which definitely eases the sting to inject some humor into these ridiculous situations.

How about concert or sporting event accessible seating? Maybe that makes it all worthwhile! Nope, not even close. Typically, in those seats you can only have one person sit with you, so the option of going with a group of friends is out. I would love to attend a basketball game with my college boy and sit amongst the crowd with not a care in the world, but I can’t. We both know that. I’m sure they have accessible seating, but sometimes I just long to be carefree and have that type of group experience. I want to be the one who says, “hey I’ll go get the popcorn!” Not the end of the world certainly, but all these little things that aren’t possible add up over the course of a lifetime, and it can make them feel like big things. 

These things aren’t perks or excuses, but rather necessary accommodations so that I, and many other disabled individuals can try and live an enjoyable and functional life. I realize that when I write about topics like this it doesn’t pertain to most people. Most of you wouldn’t say these things to someone living with a disability. I do think it’s a good reminder though for us all to choose our words wisely because they matter. Even a stranger’s unkind words can make a permanent dent. 

Maybe I can’t get to a basketball game and sit amongst the crowd with my college son, but we find other ways to hang out. This past week I had the opportunity to visit him for lunch. We took advantage of the beautiful, sunny winter day, and he pushed me around the downtown area of his college town. I was so incredibly proud of my boy in that moment. What a wonderful son he is! 💚

For more on my story follow me on Instagram @ashinneman. You can also check out my weekly column “Disability in the City” in The Hamilton County Reporter. https://readthereporter.com/DailyEdition/2024-02-08.pdf 




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