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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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Deep Breath

Hello and welcome back, or if you are new here welcome!…..Deep breath this week, as we are diving into the emotional trauma of 47 years disabled… here we go with just a few examples. Sharing these are really hard for me, but I think it’s important to share because these things are not uncommon for those who are disabled. Some I’ve shared before, some I haven’t. 

“Yeah, from the look of your profile picture you really look disabled 😂” There is SO much I could say to this. What does that mean? Am I supposed to look a certain way as a disabled woman? Please, enlighten me. I’m all ears. 

Or how about the folks that left me on the floor of a bar/restaurant because they assumed I was drunk because I fell as I was exiting because the door swung the opposite of what I was expecting, so easily throwing me off balance. Had not had a drop to drink. Left me there, staring at me as if I was a zoo exhibit.  Even the manager came by and told me to move because I was letting all of the cold air escape due to falling, so that my body propped the door open. So I crawled in order to move. I couldn’t get up on my own. Yep, that stung. Took about 20 min for humanity to show up there to help. Their assumptions wrecked me. That was 10 years ago, still hurts like a newly opened wound. Traumatizing.

Let’s talk about the guy that approached me on my first date with someone, blatantly and crudely pointing out my disability. As if we didn’t both already realize it. Thanks! Had you never made that rude comment, I never would have realized I was disabled. You saved the day! What a hero. 

Maybe the blind date where my date didn’t know I was disabled, and so then decided to go for my best friend instead. Heartwarming, truly. Thank you. You actually did me a favor.

Or how about the guy that laid on his horn and screamed at me at the top of his lungs because I was driving my scooter in the road to get to my car because of lack of access to the sidewalk. What a gentleman! A true gem.   

Ignorance isn’t bliss. In fact, at this stage in the game if you have ignorance surrounding disabilities you are way late to the party. Where have you been? Why aren’t you educating yourselves? 

If you go out and break your leg for example, you are temporarily disabled. Then what? You want the world to feel sorry for you, and now bow down to you? How about us folks that have lived a lifetime of these obstacles? Where was your sympathy and anger towards lack of inclusion? Lack of regard for our right to independence. 

Currently, I’m on a spring break vacation with my family. Yesterday, we were visiting the lovely city of Charleston, South Carolina. My scooter got stuck several times as I was trying to just cross streets with everyone else to get on another sidewalk. People just walk around me and plant themselves in front of me at a stop light. It really just blows my mind the number of people that think that’s ok. Acting like I do not exist, giving me no personal space. It is frustrating, embarrassing and humiliating when people just walk on with no regard, not asking if they can help. There were several times when my family would go into a shop and there were only stairs, so I sat outside in my scooter waiting for them. People staring at me, with looks of annoyance because I was on the sidewalk and they had to walk around me. I silently sat with tears in my eyes, familiar with this scenario. I always tell them to go on. They should not be held back because of something I don’t have access to. I would never want that. 

I often keep my anger in check, but once in awhile it comes out. If you had been fighting for change for something, and you are getting nowhere, and constantly feeling unheard, you would feel angry too. To be clear, we are fighting for things like access into buildings, access to the upper floors of buildings, buttons to open doors because it’s really hard to open a door and hold it open while maneuvering your wheelchair through. Don’t believe me? Try it sometime! Or, how about doors that are too heavy to open because of lack of strength? Should I just assume I don’t have a right to go in? The list of simple rights that people with disabilities are denied is long. It’s beyond frustrating that we have to continue to beg, plead for not just ourselves, but also for our disabled peers. We are fighting together, and we are tired. It shouldn’t be this hard, it just shouldn’t. It’s wrong. 

It really does take humble courage to go out into this world as a person with a disability. Often I’m misunderstood as a “younger” woman riding in a scooter. The looks I get never cease to amaze me. Or the comments like, “what did you do to your leg?” “You are too young to be riding one of those.” Or, “I had bunion surgery once, I know how you feel!” My patience is waning. I want true change for myself and my disabled peers, so we can go out and not feel attacked just for being the way we were made. I’m thankful for the people in this world that continue to give a warm smile. There were two of those yesterday, and that’s what I will focus on today, and not let others steal my joy of our last spring break with our son, as this is his senior year. May the good always outweigh the bad. 💚

P.S. At the airport this evening, there were two lovely ladies that offered to get me a paper towel to dry my hands in the bathroom because I wasn’t able to get one from my scooter. That small act restored my faith in humanity, and was a good ending to my trip. 😊






Comments

  1. Advocating together for accessibility is so important. This isn’t an unreasonable request!
    I can only imagine how difficult it must be to manage those negative emotions, as a genuinely positive person!
    I’m so glad there was a good ending to your trip with your handsome guys! Love to you all!
    -Gina

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    Replies
    1. Thank you for reading, and I know you can relate from your journey you have been on. It's not always easy, but you are right, it is not an unreasonable request!

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  2. I love this article. Think this is your best yet and they are all so good. Keep doing the good work you are doing 👏

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  3. I loved reading this, thank you ❤️

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  4. This one resonates with me so much. I have used a segway for about 18 years and the number of times people have walked up to me and my wife to make the point that I am "cheating" and that what I am doing isn't really exercise has blown me away and left me angry and disappointed in society as a whole. From time to time I'll get a supportive comment but I receive overwhelming backlash and misunderstanding because I don't "look disabled" when I am standing there on a Segway. It also has forced me to miss out on so many activities with family and such since I am frequently denied access to places, either by policy or by physical barriers.

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  5. It is encouraging to read the thoughts of someone living with the daily challenges of having a disability. I have congenital myopathy, but they have not determined what kind. How were you diagnosed with Bethlem myopathy?

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  6. Hey , I was just reading your blogs! What type of MD do you have! I have IBM & I am so tired of having to pay for items that help me to function each day! Keep fighting for yourself & things you need to help you each day!

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