Love Disabled Life

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Flirting with My Identity as a Disabled Woman

A significant part of my identity is that I am disabled.

This is not a newsflash to those of you who know me. In fact, you may be thinking, "This is the big revelation? Who cares." That's kind of true. One look at me, and you can easily see that I am disabled. Unfortunately, disability is a term that often becomes a label that concludes a inaccurate or negative value judgment or assessment of ability. It is the misguided negative associations with the label of disability that I reject. The truth is, I have pride in being disabled. It is part of who I am. Disability is nothing that should be shamed or pitied. And we should not be discriminated against because we have a disability. And yet, more times than not, we are. I believe that we are all human beings first. And we all deserve equal love, respect, and freedom from judgment or prejudice. Period.

I like to think that this attitude has served me well to this point in my life. I do not worry about what other people think. It has allowed me to have a more extroverted personality. Whether I'm meeting new people at dinner parties or co-working groups, shakin' things up on the dance floor, or even walking into job interviews, I don't feel the need to disclose to people the details of being disabled. And without doing so, I've still formed great friendships, gotten hired to great jobs, and lived wild adventures.

I understand, however, that people are by nature curious beings. And my compulsion to share or not share about my disability and how it impacts my life does not preclude them from being curious. My concern is that this unspoken sense of curiosity, these unanswered questions, becomes a barrier to social intimacy and friendship building. And this is something that I don't want to have happened. I don't want anyone in my life to feel like they can't ask me questions about being disabled or anything about my life. I value communication because I think it is a connector of the human spirit.

ASKING QUESTIONS IS OKAY

So to that end, for those still reading this post, let me touch on some of the highlights of my disability. When you meet me, you will quickly see that I have a physical disability. I look the size of a 10-year-old, but I am actually 37. The body you see today is essentially (albeit aged) the same as it was when I was 13. I was born with a very rare muscle condition called Trilaminar Myopathy. The myopathy atrophied my muscles so that when the bones of my skeleton tried to grow, they couldn't, particularly in my neck, trunk, and legs. The muscle tightness soon receded, but not after dislocating my hips and spiraling my spine, causing severe kyphoscoliosis. When I was a child, I had numerous corrective spine surgeries that prevented my ribs from crushing my lungs and hip surgeries that made me ambulatory.

I've lived my whole life independently. Thankfully, I don't live with any significant pain. Milestones I have celebrated include graduating from high school and college. I'm the only person in my family to have a disability, and to date, I am the only known case of my specific myopathy. My soul mate and I got married five years ago, and while I can have children, it would be physically unwise for me to do so. Thankfully, I am very content being a doggie mommy and cool Auntie.

FEMININITY, WOMANHOOD, AND DISABILITY

Another layer to my identity is, of course, being a woman. Growing up, I guess you could say I was a "late bloomer." Add to the fact that looking different in my teenage years didn't help how I grew to think of myself in feminine terms. As I like to explain it, I didn't date in high school because the boys didn't know what to do with me. And then I didn't date in college because I didn't know what to do with them. It wasn't until into my early twenties, did I start to explore dating//sex/relationships and how I felt about it all.

Thankfully, it was my introduction to the Little People of America group where I finally met other people who looked different from me. I started to get attention from men and was in a place in my life where I was still young enough to "have fun" but old enough to approach it all with a sense of maturity and esteem that I certainly did not have when I was in high school.

GETTING MARRIED

I caught up some lost time, having fun going out and partying, having my heartbroken, and breaking a few of my own. It was then that I met the man who would become my husband. We took our time and didn't rush. It helped that we lived across the country from each other at the time. Long-distance dating gave me the time to process what I was experiencing with him when we were together, during the times when we were apart. Little things like when he could complement or flatter my body, and bigger things like when we first kissed. It all took some time to sink in. I'm so thankful he gave me the time and space to do that.

THE TRUTH OF IDENTITY

Facing one's identities can be a complicated and scary thing sometimes, especially when that identity is of a marginalized segment of society. Many times I felt isolated and alone, fearful that no one could understand or relate to what I was feeling or thinking. Yet, understanding and accepting your identity is essential work for self-actualization and self-awareness that needs to be done. I believe that only when we truly know and accept all parts of who we are can we live our greatest life.