Stories from the OI Community: Now it's Kara's turn

Posted on September 30, 2006 at 10:00 PM

Earlier we heard from her Mother Su, now we hear directly from Kara. If her story doesn't inspire you to do more with what you have, nothing will. Here are her words:

Osteogenesis Imperfecta (O.I.) is not only the medical label for my bone condition, but also an explanation of an important component of my personality. Of course, this has affected the way I've experienced nearly every event in my life. One of the many gifts of unique insight that O.I. has bestowed upon me is a changing perspective of my body and identification as a person with this bone condition. For much of my childhood, I took the stance to "overcome" my, at times, fragile state. I strived to achieve my goals "despite" my body.

Even before I became immersed in a community of other people with disability, I began to change my interpretation of my disability as differences in functioning, not necessarily being inferior in comparison to the way others performed their daily tasks. It's interesting to look back upon my early public speaking experiences. I can now see a changing pattern as I went from listing the many things I could do that were surprising in relation to my diagnosis to providing education on how I lived life in much the same way as those in my audience with a few adaptations and alternative approaches.

I entered college with this attitude: While I was different, I was an equal individual and just went about life in a different way. It was then that I began to learn about the history of people with disabilities. I found my place within both the able-bodied world and within the disability culture. I began to see my strengths as a person with a disability and realized that many of the things that I cherished in life may have been accomplished in part BECAUSE of the repercussions caused by my abnormal bone structure.

My identification with my specific disability became even stronger as I pursed an adapted swimming career throughout college. While many of us seem to really enjoy the activity and freedom of the water, I was often the only person with O.I. at disability swim meets. As I excelled within my disability classification, it became a strange reality that my body was performing better than others, even others with different disabilities! At times, it was frightening to rely on a body that had at best been unpredictable for most of my life.

As I trained harder, I asked more from my body and it responded. It’s been essential for me to build a mind-body relationship with myself and my disability. My swim times got faster, I moved up in rankings, and began to set American and World records. In 2004, I was selected for my first international team, the 2004 Paralympic swim team. I was the only member of Team USA, which included over 400 athletes from all the summer sports, with Osteogenesis Imperfecta. Sometimes the focus of interviews was distracted from my athletic abilities or performance by the nature of my condition. In many ways, it's difficult for people to imagine. It tests our beliefs about what our society defines as strength. Still, being a person with O.I. definitely became a great source of pride for me at this time.

While I remain proud of my specific disability and the traits it has contributed to my personality, I've also discovered other aspects of disclosure as I've entered the professional world. There's no question that discrimination exists within the employment spectrum for people with disabilities. I clearly can't disguise the fact that I'm in a wheelchair throughout an interview, but I've faced the reality that I often need to neutralize my disability references in my resume to even get the chance at an interview.

The nature of O.I. also makes employers nervous. True, their fears are generally ridiculous and based on ignorance. As people with O.I., unfortunately, we rarely have the chance to combat these overreactions before employment decisions are based on these judgments. For this reason, I sometimes remain a little elusive as to the exact name/nature of my disability in certain employment situations. I draw the line at providing false information related to my condition and if directly asked in an appropriate manner, I would most certainly answer honestly. So for now, as a young professional, I'll continue making use of the awkward tendency of people to assume rather than to ask.

My feelings related to my bone condition have changed throughout the years just as the shapes, lengths, and strengths of my bones have altered. I've embraced different identities and have enjoyed the support, guidance, and mentorship of people both with and without disabilities who have found a way to love me and my bones.

If you'd like to learn more about me, feel free to reach me at my web site: It’s long overdue for an update, but I feel the motivation coming for that as we speak.

There are pictures from my Paralympic experience and archived blogs I wrote during training and competitions. I contribute to Audacity magazine between working on my Ph.D. in clinical psychology and serving as Strategic Planner for the National Youth Leadership Network. If you are a youth (age 17-28) with a disability, come check it out.

Thank you so much for your inspirational words Kara.

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I work at St. Jude Children's Research Hospital in Memphis. We're one of the few hospitals that have an OI research & treatment program. We were the fist hospital to preform bone marrow transplant for OI.
Read more here,2616,582_3161_2945,00.html

Posted by: kalisa | September 30, 2006 10:38 PM

What an inspirational life you live!

Posted by: Kami | September 30, 2006 10:46 PM

As you know, I have kept your very first words written and cherish how your words spell out now how you seldom look at limitations. Your words were uplifting, inspiring and delightful to me. :) Mama

Posted by: Su | September 30, 2006 10:57 PM

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