By Kara Aiello
As a woman who lives with a disability, I know the stigma that I face in a culture that values a perfect body, particularly among women. My body may not arouse “babe’ fantasies in the eyes of some when I wheel past them. This is something I have struggled and lived with so much of my life and making peace with my body has been a challenge for me like no other.
Born
with brittle bones or osteogenesis imperfect, I have had many fractures that
have caused me to be petite in stature. To see me, you would notice I have very
petite legs as that is where the brunt of my fractures took place. I also have a very small torso due to a
curvature of the spine called scoliosis.
For many years, even the thought of looking at my body was hard for me to do and accept. I saw it as a “deformity” and something provoking disgust. And when I was with female friends who were not disabled, I always felt that it was taken for granted that they would get all of the attention because of their looks and not me using my wheelchair. For the longest time I felt intimidated around men, as I assumed they would never be interested in me. I avoided making eye contact with them, or tried too hard to fit in. Although I am much more confident today, this is still something I struggle with at times.
My
history of how I viewed myself has changed over time, however. Back in the early 1990’s I went to counseling
for mild depression that I have lived with for a long time and came to
understand was a part of living with my disability. Through counseling I gained an insight into
myself that I never knew before. First,
I learned that I had to grieve my disability a s a death in its own right. I had to experience that sadness even though
I was born with this condition.
Second, one of the greatest lessons I learned was to accept my body a little more while also knowing that I am more than just a physical presence. I have been a dancer for well over twenty years now having studied modern dance for many years and now ballroom dance with American Dance Wheels Foundation. This has helped me to make peace with my body and to find beauty where it lies. I can be positive; focusing on the good features I have and spice things up to show off my own style and sexuality.
To add, I also was Ms. Wheelchair Pennsylvania, a state wide program associated with Ms. Wheelchair America. This organization is a parallel to Ms. America but does not focus on physical beauty the way the other pageant does. Those who represent their state or go on to be Ms. Wheelchair American, focus on advocacy and education for those living with physical disabilities. But, the pageant does allow women with physical disabilities the experience of a pageant without the stereotype of one style beauty fitting all. For more information, please see at the end of this article.
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Perhaps
most important, I learned that my disability gave me a gift in a way, an
empathy to accept the differences in all of us.
It has taught me to be more tolerant and accepting, to branch out and
meet many diverse people. But this
insight also has helped me see that I want to just be me. I do not want to be labeled with politically
correct terms. I see myself as able bodied
my own normal and just living with something that is an extension of me.
There will always be challenges
facing me, and I now understand a little better that some of what I find a
challenge in life is what we all struggle to cope with. It is the ability to like who we are, and
the hope that others will see us for how great we all can really be.
Resources:
Although Kara has Osteogenesis Imperfecta which simply means brittle bones, Kara has studied dance for over 16 years now and currently dances with American Dance Wheels Foundation. But for the bulk of her dance career she danced with Kardon.. Kara works as a licensed therapist part time at an inpatient mental health facility and as a Free Lance writer for Montgomery County Community College. She also sings with the Academy Chorale as the arts are an important part of her life.
Resources:
Ms
Wheelchair Pennsylvania Program gives women with physical disabilities
throughout the state the platform to show achievement and provide public
awareness of living life with a disability. Go to www.mswheelchairpenn.org to learn more about and get involved with the organization.
There
is also Ms Wheelchair America which is the national organization also
promoting education and achievement for women who live with physical
disabilities and use wheelchairs for mobility. The goal of Ms
Wheelchair America is to stay away from selecting the most attractive
individual but instead is to find someone who is a strong advocate,
great communicator and has achieved much in her life. The selected
representative must be able to communicate both the needs and
accomplishments to the communities at large. She also must have good
awareness of business, community, and legislature. To learn more go to www.wheelchairamerica.org
This is a great article on self-love and self-acceptance (something every human being grapples with at some time).
ReplyDeleteThank you for sharing too such depth & helping your readers find the courage to do the same!
You are so brave and fearless, Kara. Thanks for sharing, and for the inspiration. All I can say is that I hope to be "just like you" when I grow up. (I'm 64, and still learning each and every day how to like it, and love Multiple Sclerosis.)
ReplyDeletetoo good piece of information, I had come to know about your site from my friend sajid, bangalore,i have read atleast 7 posts of yours by now, and let me tell you, your web-page gives the best and the most interesting information. This is just the kind of information that i had been looking for, i'm already your rss reader now and i would regularly watch out for the new post, once again hats off to you! Thanks a lot once again, Regards, upma recipe
ReplyDeleteKara has very touchingly and candidly expressed her phases of life with physical setbacks. but today whatever she has achieved in her life despite the disability is all by her innate virtues, namely determination and perseverance. that beauty is skin deep and impossible can be turned to 'i am possible', she has proved through her life. best wishes and warm regards from a person with spinal cord injury, kolkata-India.....
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