Hello and welcome to another week at Humbly Courageous. I’m so excited about the number of new readers here. A quick introduction for those who are new. I am 49 years old, married with two children. I live with a type of muscular dystrophy called Bethlem Myopathy. Symptoms of the disease were first noticed when I was 17 months old, however it took me 44 years to finally get a correct diagnosis. My blog is a series of life experiences, some past and some present relating to my life living with a disability. The sole purpose of writing the blog is to reach others who are feeling alone on their journey and attempt to be that someone for somebody that I desperately needed growing up with a disability. If I can educate on disabilities, that is awesome too.
This week I wanted to share a thought I had about how I feel there can be such a divide between the disabled community and the non disabled community. It's this push/pull thing that I have observed throughout my lifetime. An us against them mentality. I feel that the things that people with disabilities share are sometimes misunderstood. They are seen as attention seeking, or trying to prove that their life is more difficult than someone else's. Not always of course, but I do notice that happening a lot. In fact, the reason this came back to my mind this week was due to a comment I received on a recent blog post. It wasn't meant to be a vengeful comment in any way, but it did make me pause. The comment said, "You are so inspiring I love to read your blog, but it does make me feel unworthy because I’ve never had to deal with anything as difficult as this." It was a comment on my blog post titled "Dear Muscular Dystrophy" which was basically a blog post I wrote where I was finally able to put my feelings into words that I have felt so long in relation to my muscular dystrophy, and the journey to getting to that correct diagnosis. I have to admit this comment made me so sad! What many of us with disabilities are trying to accomplish when sharing videos, or writing content about our lives with disabilities is largely to try and gain understanding from others and help educate on disabilities. As the largest minority group, we often feel misrepresented, misunderstood, and often overlooked. It's not a good feeling. We aren't trying to make others feel bad about their lives. We all have difficult things in our lives. I say that ALL of the time. I just happen to be sharing about mine. It's never meant to be viewed as a contest as to who has life the hardest. I mean that in the nicest way possible. Also, I feel like I have to add a disclaimer that I am by no means trying to speak on behalf of all disabled people. Please understand that!
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I try to keep a sense of humor when out in public. The comments I receive and the things that happen to me are sometimes comical for sure. For instance, I attended a church service by myself last week. Normally, my husband is with me to help me inside as there are a few stairs and it’s a bit of a walk from the parking lot for me. I purposefully waited in my car until the majority of the people had made their way inside. I do not enjoy walking in crowds as I am very unsteady. There were some stragglers on that day though, but I decided to go on in so I wasn't too late. There were two gentlemen who were greeting people and holding the doors. I was about what seemed like half a football field away when they starting loudly saying things like "you are definitely obeying the speed limit", "you are doing great, keep going!" "you've got this!". Drawing as much attention to me as possible, which is the last thing I like to happen when trying to concentrate on my walking and not falling is the goal. To be completely honest, I was annoyed. I feel that they were probably a little uncomfortable and didn’t know what else to do maybe? I don't like being singled out, and that has been a pattern over my lifetime as a disabled person. Some would call it "special attention", I would call it singling me out as different.
Not trying to drive a further divide by talking about these interactions. Truly I am not. I strive to bridge the gap between where I’m at and society’s lack of understanding what it’s like for me (and many others) as a mostly ambulatory disabled person who’s disability is very visible when walking. I appreciate that their goal was likely to encourage me and make me more comfortable in what they possibly viewed as an uncomfortable situation for me. I know from a stranger's point of view it looks like I'm very uncomfortable. I always try to be gracious in those moments, giving people the benefit of the doubt. They likely aren’t thinking I’m a person who has lived her whole life with disability and I'm weary of these types of interactions. They probably think I hurt my leg. Why would I assume this? Because that’s 9/10 times what people ask me if they do ask about my disability. They say “oh how did you do that or how’d you hurt your leg?”
Through speaking openly about these interactions I believe we can attempt to help others understand. You don’t need to go out of your way or give me special treatment. I’m just like you in most ways aside from a physical disability and a greeting like everyone else gets would be perfectly sufficient for me. As a disabled person I do not think that I am "special" or deserve special treatment. However, do not confuse that with the fact that sometimes things do have to be done a little differently to accommodate or make things accessible for those with disabilities just to function in society. Those aren't "special" needs. They are human needs. Just like a non disabled person has needs, disabled people do too. It's not easy for me to write about a topic like this, because I do fear I will continue to be misunderstood. It takes Humble Courage to talk openly about this, but I feel like at least attempting to gain further understanding, and working to bridge that gap is ultimately far more important than if people don't agree with me. If we don't try, we will never know the difference we could make for those that come after us. 💚
For more on my life with Muscular Dystrophy and how I advocate for the disabled community, you can find me on Instagram @ashinneman
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