Posts Tagged ‘Spina Bifida’

I wanted to share this video with you about a man whose experience clearly demonstrates the power of occupation in coping with his disability and learning to thrive in every day life.

This is the story of Tyler Genest, a 20-year-old man who lives in Hawaii and was born with Spina Bifida.  He explains the basics of this congenital spine condition in a short documentary, and you can find more of his story and his e-mail address onYouTube.

A common theme that I have heard amongst guest speakers and videos like this one is, I can do pretty much everything that you can do, I just use wheels to get around instead of walking. Or another one I have picked up on is, I have been given more opportunities in my life sitting down than I ever did when I was walking.

To this end, I find that it is important for occupational therapists to make sure to focus on the strengths of a person with, say, Spina Bifida, rather than his or her limitations.  If there are safety issues, then sure, be aware of the limitations.  But in general, we can do more good by focusing on the skills that a person has rather than on the deficits.  Sure, maybe Tyler doesn’t have the use of his legs, and he has a really steep driveway that takes him several minutes to ascend, and he has to use a special wheelchair lift to get on and off the city bus.  But he is strong-willed and he has a passion for helping teenagers grow through difficult times.

This is where I see the power of occupation.  If an occupation is some activity that carries personal meaning for the person engaging in it, then for Tyler, youth ministry has become a life-changing occupation.  Not only is he good at it, but it is rewarding for him and it brings him great joy.  It tangibly shows him that his life, no matter how difficult it has been, is making a difference in the lives of young people.

One article I’ve read states what may seem obvious to most of us. “Living a meaningful existence or having a purpose in life is associated with well-being,” and, “Participation in valued roles is related to life satisfaction and measures of well-being.” *

Duh, you may think.

But what if Tyler had never realized that he was good at youth ministry?  What if he never had the chance to understand how meaningful his existence was?  What if he didn’t find an occupation in which he felt he was participating in a valued role?  Maybe he would have found something other than youth ministry.  Or maybe he would have attempted suicide again.

So those of us in the field may take the power of occupation for granted.  But when I hear a story like this, and then relate it back to what I’m learning in OT school, I can’t help but stand back and smile at just how meaningful what we do really is.

*These two quotes were taken from Matuska and Christiansen’s article entitled, A Proposed Model of Lifestyle Balance. It can be found in the April 2008 edition of the Journal of Occupational Science, Vol 15(1).


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