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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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Disability Defined

Hello and welcome back! If you are new here, hello! Glad you are here. Many of us have heard the phrase, my disability doesn’t define me, right? What comes to mind when you hear this? This is one of those phrases that can spark a lot of conversation and disagreements, even within the disability community. 

In all transparency, I have to say, that phrase no longer makes sense to me. I don’t get it. If we are saying that, how can we expect non-disabled people to not see disabilities as negative, if we ourselves are saying, nope doesn’t define me, not a huge part of who I am. I think we have to be honest in educating others that while we are still capable of doing many great things, our disabilities do often present challenges. I think we have to do that to have our needs met, and continue to push for a more accessible world.

I think it’s ok to say, “my disability defines me.” It does. It’s me. All I’ve ever known. It makes me, me. It affects most everything I do. How does that not define me? I am proud of that now. My disability doesn’t always keep me from achieving things, but the lack of accessibility in our society often slows down the process or makes some things unattainable. If I’m saying my disability doesn’t define me, to me, that seems like I’m shining a negative light on disabilities, and that is not how I feel about my disability. 

I spent far too many years trying to stuff away my reality of being disabled. It’s not a fun way to live. Trying to cover something up that is impossible to hide. It’s also exhausting on a whole other level. Trying to pretend like your body doesn’t have different needs, and often demands a different pace than that of a non-disabled person. It makes me sad to to look back and think of the emotional stress I caused myself by denying my reality, and not advocating for my own needs to make things a little smoother. However, I felt a lot of shame surrounding my disability for a very long time.

Society has come a long way in recognizing those who live with disabilities are human just like anyone else. Still, a long way to go, but seriously a lot of progress has been made by those who live with disabilities and those who support us by raising awareness and educating. I feel seen as a human, and a lot of times respected, when the norm used to be, I felt dismissed, diminished just because I am disabled. There are still plenty of those kind of experiences, but it feels better. Most days anyway. 

I know my opinion on this matter isn’t that of everyone who lives with a disability. I get it, this is just my take on that statement as a 47 year old woman who has never known anything other than living in a disabled body. My opinion on this likely would have been different, even 10 years ago. I’ve made a lot of progress in the arena of self- acceptance, especially since finally being diagnosed a little over 3 years ago. 


It takes humble courage to see and accept ourselves just as we are. However, it’s a great start to moving more towards an inclusive world for all. If we can start by including our whole selves, I believe we have made a good dent. 💚

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