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March 2002

Living with Spina Bifida

By Robert M. Hensel,
Poet with Spina Bifida
Email: poetic_bob_2001@webtv.net

Robert Hensel was born in Rota, Spain in 1969. Currently a resident of Oswego, New York, he is an international poet-writer. On 1 October 2000, Robert was honored when the Mayor of his home town declared a week for people with disabilities, "Beyond Limitations Week", in his name. Here is his story:

Robert Hensel.

A poet's story

I grew up with a birth defect known as spina bifida, a disability that affects my sense of balance, causing me to walk with a limp. Not only does it affect the function of the legs, but it also has an impact on the kidneys, causing them to deteriorate.

The disability has had its ups and downs. As a young child, I can remember the way other children would look at me and stare because of the way that I walked. There were many times that my schoolmates would laugh at me and call me names simply because of their lack of understanding of why I was a little different, especially back in the mid 70s and early 80s. Children then were just unwilling to take the time to learn why one of their classmates might walk, speak or seem noticeably different from themselves.

Now that I am an adult, I have noticed that the stares and names have begun to fade, and judgments that once were negative have begun to turn toward acceptance. The signing of the Americans with Disabilities Act (ADA) has played a great part in breaking down some of those barriers that, as a child, left me to fight a war that seemed to have no end. Now I look beyond what I can't do and focus on what I CAN.

I have learned that limitations open doors that have been closed, showing other ways to meet our needs. I have always looked at life as a challenge, grasping each obstacle with open arms. There is nothing in this world that comes easy. I must stand tall and look forward, to be ever so ready for what still lies ahead. People often feel sorry for those who were born with some type of disability. But their compassion is misplaced. Yes, I may not be able to run as fast or perform certain tasks, but my disability gives me a better look at life and all that's around me. I want to be seen not as a disability but as a person who has, and will continue to, bloom. So I decided to become an advocate on behalf of disabled Americans, to fight for our rights that for so long have been ignored. I feel that it only takes one powerful voice to change the minds of many nations, and as long as I have a mouth to use and a mind to think I will continue to work to bring peace upon the disabled community.

"Peace of Mind"

Carry me out the ocean,
where my drifting thoughts flow free.
Guide them to a far distant land,
that only the mind can see.
There I shall paint a great portrait,
of what this world should be.
A place without senseless wars,
and human poverty.

"Beyond Limitations"

Placing one foot in front of the other,
I've climbed to higher lengths.
Reaching beyond my own limitations,
to show my inner strengths.
No obstacle to hand
for this warrior to overcome.
I'm just a man on a mission to prove,
my disability hasn't won.

"Inside of Thee"

I kneel down before the shallow waters, to reveal my own reflection.
Just a mere window of the soul, is all that my eye's can be detecting.
For what all that I consume, is not all that there is.
We must look beneath the visual shell, for that is where we live.
Reach deep my friend, and you shall find much more than you conceive.
For who or what we may become, exist inside of thee.

Editor's note

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