Cloak of shame

For much of my life, I wore a heavy cloak of shame. I couldn’t shake it. Even if I was successful in ridding myself of it for a short period of time, I would encounter someone in public who would give me a condescending stare or rude comment, and there it was enveloping me again.

I was ashamed of my disability. Embarrassed by it. Loathed it. Tried my best to separate myself from, well … myself. I felt like if I could fix this one thing then everything would suddenly be perfect. In my mind, it was THE cause of everything that went wrong in my life.

I prayed nightly to wake up healed the next day. I really believed that would happen. It didn’t.

What did happen is that as I got older, I started to realize there were other parts of myself that I could use to make others more comfortable around me. One thing about me is that I LOVE to laugh. I love to make others laugh and I love to laugh at stupid, silly things. I quickly realized that humor was a great tool to help those who were hesitant to befriend the disabled girl, to feel more comfortable. They realized I wasn’t so different from them, and in turn, I realized that, too. Win, win.

Another way that I connected with others outside of my disability was that I was a good listener and a friend to all the different groups of people. I had the ability to connect with so many different kinds of people. I discovered that my disability made me approachable and relatable, in the sense that those who were having troubles felt comfortable sharing with me because it was outwardly obvious that I had struggles too. I always really liked that part about myself. It made me feel a little less alone and served as a spark of passion for my career in social services.

Still though, for a very long time, I lugged that heavy cloak of shame around, wishing things were different. I wished my legs were strong and beautiful like many of my classmates. I wished I didn’t have so many scars or missed so much school and time with my friends because of surgeries and rehabilitation. I was ashamed of my true self. It was dark and lonely under that cloak.

When I had children, they became an age where they too would struggle with self-image. (Who doesn’t?) I found myself encouraging them to embrace their differences.

As I would tell them this, inwardly I felt like a huge hypocrite. I knew that I certainly wasn’t doing that, so why would I expect them to? That’s when I knew I needed to try and lose the cloak of shame for good.

It hasn’t been easy. It’s a process of shedding it and then unwantedly lugging the weight of it around again. However, I was determined to shed it. I wanted to be an example for my boys of what confidence in the face of adversity looks like. I wanted to be “strong” for them.

My kids have witnessed my struggle to lose the cloak of shame. They have seen in real time what my insecurities look like when someone shames me in public because of my disability. They have also seen me continue to rise above the criticism and opinions of others. They’ve seen me hold my head high and continue in a world not designed for me, where I face obstacles seemingly at every turn.

During my time as National Ambassador for the MDA, as I stood and represented our country speaking to different audiences, my cloak of shame was discarded, burned, and replaced by a cloak of progress in accepting myself just as I am. Not wishing I was someone else but realizing that who I am matters. It matters because who I am can help others see that they too can shed the cloak of shame and step into the lightweight feeling of the cloak of confidence.

Now, I often see my disability as something that has made so many things in my life beautiful. So many beautiful, wonderful experiences and people have come to me because of my disability.

There is no question that living life with a physical disability that greatly impacts your daily life is extremely difficult. It causes many difficulties, sadness, and frustration. It takes humble courage to look further into hardships and dig to uncover the treasure in it. It may take years. Decades. It’s there though. Underneath the shame is beauty and goodness.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.