Skip to main content

About Me

My photo
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.

Followers

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 tansperancy, 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. 💚

Comments

Popular posts from this blog

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operating rooms

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 escap

A Hateful Encounter

Hello and welcome to Humbly Courageous which is a series of past and current life stories, as a woman who has lived her life with a disability. Sometimes, my posts are happy and upbeat and encouraging, and others like the one you are about to read, are an example of the social injustices I face regularly as a disabled woman. I like to keep thing’s positive and upbeat, but as you know life just isn’t always that way.  Sitting looks very different than when I walk  To the woman who treated me so cruelly just because she judged a book by it's cover.... I guess you'll never know how deeply your mean stare and unkindness towards me hurt my heart. I guess you didn't see me struggling to carry three small grocery bags to the car while walking with my cane. You couldn't have possibly known the thoughts going through my head as I was putting my cart away and getting ready to make the short trek to my car. The conversation going on in my head went something like this.....Am I goi