Redefining Disability Challenge – Question 29

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty ninth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Are there ways that disability affects your self perception?

Of course there are! How could my self perception not be affected by such a major part of my identity?

As a child, before I knew about the social model of disability and when all I saw were nondisabled people, I wondered why I couldn’t be “normal” like everyone else. I had no idea there is no such thing as “normal.” I didn’t understand the realities of an invisible disability.

I heard medical professionals tell my parents about the various ways my body was wrong, or “less than normal.” My feet were inverted and it was just a matter of time before surgery would be required. My hips were uneven. My gait and awkward balance were going to cause me to fall. I would never run. My arm contractures would progress and interfere with my ability to play the violin and piano. We’re just trying to prevent her needing to rely on a wheelchair for as long as possible.

I also heard the remarks strangers and family friends said to my parents. I’m sure they meant well, but imagine what it is like for a little girl to hear these comments regularly.

It’s a good thing she’s so smart because she’ll need all the brains she can get since she is handicapped.

And she’ll always walk funny? Such a shame for someone so outgoing.

Thank goodness she’s not stuck in a wheelchair.

She’s not going to die from it, will she?

My doctors weren’t unkind monsters. They operated in a medical model which could not picture me as an adult with good quality of life. The people who made those comments to my parents weren’t heartless. They were trying to comprehend how a child living with what they perceived as the worst possible curse (a progressive neuromuscular disease) was thriving.

If I haven’t already given them enough praise, indulge me as I once again offer thanksgiving for my parents, sisters, teachers and friends. They believed in me and encouraged me to look for possibilities when strangers only saw obstacles. They taught me to be grateful for my abilities, recognizing my uniqueness.

My father tells a story about an exchange we had before I started kindergarten. I was excited about school and eager to finally get to go each day like my older sisters did. The night before school started, he sat with me in the living room and attempted to prepare me for negative interactions with my peers. “Denise,” he said seriously, “Some of the kids you meet may not be nice. They may pick on you because you are different.”

When he tells this story, he usually smiles and shakes his head before giving my response.

That’s OK, Daddy. Only God is perfect.

He tells me that moment was when he knew he didn’t need to worry about me going off to school and interacting with my peers.

Have I always believed I was competent or “able” enough? Of course not. I wish I could tell you I didn’t stand along the gym wall with my friends during high school dances and wish I looked coordinated. I wanted to be able to look like everyone else when I danced. But the desire to appear less “gimpy” never stopped me from dancing. I was, and still am, often one of the first to grab my friends and pull them out on the floor with me.

Sure, I went through a phase in high school when I was convinced nobody would ever date me because of my disability. It wasn’t until I started viewing myself as worthy of dating that guys started paying attention. Dating as a person with a visible disability is not for the faint of heart, but it can be fun. At least, it can provide a great deal of fodder for blog posts!

My disability is an important part of who I am, but it is just one part. I am a woman who happens to use a wheelchair so of course this alters my world view. I will always see things differently than the nondisabled woman standing beside me. My self perception is shaped by my experiences and by the messages I receive from the world around me.

Most importantly, it is shaped by me and my belief in myself. I know I am competent, capable and deserving of equal opportunity. I demand it from those who would not view me in the same positive light. My confidence inspires some, but can also threaten or intimidate those who lack confidence in themselves. Rather than feel bad about myself for what they erroneously feel I am lacking, I pity them for not being able to see their own strength and potential.



5 thoughts on “Redefining Disability Challenge – Question 29

  1. So great, Denise. I think every honest person can see issues with body-balding, too short, too tall, too chesty, no chest at all, etc. Then add in health related items-very hard for one to handle, and yes, you were lucky to have such amazing experiences that helped smooth the way for you.
    I hope you realize, and we can’t say if often enough, how amazing you are as a person. Not because you are sitting in a wheelchair, but because you are unique, and wonderful woman. Love ya


    • Thank you Crinnie. Everyone has their “thing” which causes them some anxiety or self doubt. Thanks to all of you telling me how wonderful I am, I have difficulty when others don’t realize it right away! 🙂

      I’m kidding – and I’m not THAT wonderful. Just a bit wonderful. 😉


      • Denise,
        I loved this post and it kept me wanting more. Sometimes our disabilities are visible, sometimes they are hidden, but blatantly visible to you. I will have to read more because tucked within your words was an understanding of people that I believe is rare. So glad I stopped by.


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