Inspired

Hello and welcome back! If you are new here, I’m so glad you stopped by! I’m a 48 year old woman who was born with a rare form of Congenital Muscular Dystrophy called Bethlem Myopathy. It took me 44 years to receive a correct diagnosis, so most of my life was living with the unknown. While it wasn’t easy living undiagnosed and caused a lot of confusion surrounding how I viewed my disability, the one thing it didn’t change was that I was disabled. No matter the name or cause of my disease, it still physically affected me the same, name or not. Becoming diagnosed didn’t change anything at all for me physically. Mentally though, it changed everything. How I viewed myself and how I took in comments from others. One phrase I hear a lot, and one that is supercharged within the disability community, “you inspire me”.

I’ve talked a lot in previous blog posts about how I have had to deal with a lot of unsolicited negativity in my life. Mean and rude comments, hurtful stares, people shushing their children and quickly guiding them away from me when their curiosity sparks a comment like, “mommy why does that lady walk like that?” Those are definitely not enjoyable times when out in public. Those times honestly never get easier in the moment. However, they have become, for the most part, easier for me to shake off and move on afterwards because I see myself differently than I used to. Not always, but it’s much better. I no longer see myself as weak and cursed, but rather strong and blessed with a unique view of the world, and how I can use my disability and my life experiences to help encourage others disabled or not.

 

A lot of times people will say to me, “you inspire me.” They say that to me for many different reasons and have since I was very little. To be honest, when I was younger it often times did feel like a pity statement, only said to try and make me feel better about myself, with the undertone of the assumption being that because I was disabled, I felt bad for myself. I think a big part of that is because I was often living in defensive mode. When I wasn’t able to view my disability from a place where I could see the positive side of how it could be “used” in a way that could help others, that phrase often offended me. I place no judgment on those who are disabled that don’t appreciate those words coming from others. It is hard to wrap your mind around viewing yourself as someone who inspires others just by living a normal life. The truth is, none of us have total control over who we inspire or why we inspire them. We hope that our inspiring people comes not from a place of pity, but rather from a place of they are seeing something in us that lights a spark in themselves to try something new, or see things from a different perspective. Of course it’s not just disabled people who inspire others.

The way I see it, we make progress in our lives and we grow as people when we are inspired by others. That’s what it’s all about. People helping people. I’m personally inspired by a lot of people, some are disabled and some are not, and for many different reasons. Normally when I am inspired by others, it ignites a creative passion in me. 

With all that being said, speaking condescendingly to a disabled person, for instance telling them that they are so inspiring because they get out of bed everyday and function as a human, and saying you could never do that if you were in our shoes is not ok! That is not a compliment. Please keep that in mind. Disabled people aren’t lesser than, we are humans capable of many things just like non disabled people. It’s the inaccessibility in our society that sometimes keeps us from achieving things at times, or makes it more complicated when it doesn’t need to be, and certainly in 2023 shouldn’t be. But it often is.

One thing that kind of turned this around for me too was asking people what they mean when they tell me I inspire them. I have to believe that, most people, when they say that, are coming from a good place, not one that’s meant to be hurtful in any way. I think we need to try and mend the division felt between disabled people and non disabled people. We aren’t going to make the progress that needs to be made if we keep seeing the worst in others. If you want others to view you in a certain light, then live by example. It’s up to them if they want to see things a certain way. We can’t force others to see things exactly as we may want them to, but we can try and help them have a better understanding.

At my age, and being through many different mindsets towards my disability through the course of my lifetime, I would advise you to focus on living well. If someone telling you that you are inspiring bothers or offends you, then tell them that. Help them to understand why that is upsetting or causes you to be angry. That is how things are going to change where change needs to be made. By having these conversations with others.

Having tough conversations takes humble courage, but that is how progress is made and change can happen. We all have different reasons for the way we feel surrounding certain topics. It doesn’t always have to be that one view is right or wrong. 💚