Flirting With My Identity As A Disabled Woman
A major 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. But what I draw issue with is the term of disability. It is a label that concludes a value judgement or assessment of ability. The truth is, I have pride in being disabled. It is part of who I am. But it is the often misguided negative associations with the label of disability that I reject.
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. It is this attitude and personal philosophy, that does not ascribe to the application of external labels, not just for disabled people, but all people.
I like to think that this attitude has served me well to this point in my life. Not worrying 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, become a barrier of social intimacy and friendship building. And this is something that I don't want to have happen. I don't want anyone in my life to feel like they can't ask me questions about being disabled, or really 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 easily 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 a 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 independently my whole life. Thankfully, I don't live with any major 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 group Little People of America where I finally was able to meet other people who looked different like 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.
I caught up some lost time, having fun going out and partying, having my heart broken, 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 compliment 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 the identity is rooted in 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, it is important work for self-actualization that needs to be done. I believe that only when we truly know and accept all parts of who we are, are we able to live our greatest life.