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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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Captured Thoughts

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

Warning, this blog post is a bit of a brain dump that probably will seem all over the place. That's just where my mind is this week.

Recently, I have heard/read about so many struggles within the disabled community. Not something unusual, but lately it seems more amplified. Whether it's reading someone's blog, or seeing their content on social media, the tone I've seen lately has me thinking...a lot. Tackling the mountain of merging the disabled community with the non-disabled community can feel so overwhelming at times. I can feel like I’m making a difference based on the feedback that maybe I am currently receiving on a good week, and then I read negative comments or hear feedback from another disabled friend and I think, “this is impossible”. It feels heartbreaking that on top of a disability, we still have so much work to do. We keep doing it despite the ugliness and pushback, and overall lack of understanding that we often feel when putting ourselves out there for the sake of helping others. It is draining, but quitting would feel like giving up, and that's not an option.



My heart longs to do so many things that I realize may never happen in my lifetime. SO MANY THINGS! If I dwell on that for too long, I go dark. I hate that feeling. Emptiness, stripped down, ugly loneliness and frustration. Wanting to hide from everything and everyone. There are many things I write that never are seen by anyone. As a people pleaser (working on this among many other things!) I don't ever want to offend someone or hurt anyone's feelings, even at the price of my own feelings. I don't ever want anyone to feel dismissed or lesser than because of something I have said. I've been thinking a lot lately about this. It's always a battle to put my words into a context that can reach all kinds of people. It's hard to explain, but it's a responsibility that I feel, and feel pulled to move forward with. So, that's definitely a work in progress. Always room for improvement. 

My heart longs to be among a crowd of people, and to not feel like I am in this black tunnel far away from the reality they talk about. Maybe I do it to myself, I don't know. I certainly struggle with social anxiety as a disabled woman among non-disabled strangers. Meeting new people can be tricky, and I often leave social events feeling so defeated and transported back to a place I didn't ever want to return to. Many people are standoffish when meeting a person with a disability. Maybe it's something on their part where they don't want to say the wrong thing, or offend me, or maybe it's me putting walls up and closing myself off to avoid pain of rejection, or feeling lesser than. Perhaps a combination of both. 

I cannot stress enough that it is far more painful to never talk to me about my disability, and to act like it doesn't exist. It certainly doesn't need to be the highlight of every conversation, but rarely does someone ask me questions about it. I am always open to that, and would love to share insight, but it feels to me like that is not somewhere that most feel comfortable going. I am also guilty of not meeting my friends at their most vulnerable places, so I can certainly relate. I wish that we could change that. I think that could really help many people. Where we could say out loud, "hey, I'm struggling and here is why". People always talk about social media being a highlight reel, to which I don't disagree. I also feel like that happens just as much in real life conversations though too. It's not just a social media thing. No one wants to be the one in the group to bring others down. I am going to make more of a point to have these difficult but meaningful conversations where needed. 

I also can see the other side of that, where maybe that's not the "vibe" I put out with others. Talking openly about my disability is still a fairly new thing for me (minus the very close people who have known me forever). I have grown more comfortable in writing from a vulnerable space, but I admit that face to face conversations are something I can fumble over for sure. I struggle with that fine line of not presenting as a victim of my life, but wanting to share the honest truth of what life is like living with a disability. That is a very hard thing to do. I hope to become better at that, and will certainly work to improve where I can. 

Well, see what I mean? All over the place. It was hard to quiet my mind this week and hone in on one specific topic. Lot's of thoughts and realities swirling through my mind. Keeping it real takes humble courage, and talking in person about our vulnerabilities is never easy. Maybe if we can all get to that place below the surface conversations, we could meet each other where we long to be met and comforted. Maybe we could all just feel a little more understood, and a little less alone. 💚

Fore more on my story follow me on Instagram @ashinneman and check out my weekly column, "Disability in the City" in the Hamilton County Reporter. https://readthereporter.com/bridging-the-gap/


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