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The One Word I'd Rather Not Be Called as a Person With Cerebral Palsy

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When you’re disabled, the first thing you may notice each day is that you’re “different.” You may recognize it when someone else puts your clothes on and does tasks like taking you to the bathroom and brushing your teeth. However, you may also recognize that if you bring a positive attitude to society, people respect you and even revere you because they believe you have overcome so much. Although this is appreciated, the term “inspiration” can be overwhelming.

Why should citizens with disabilities get an overabundance of compliments for having a strong desire to achieve the American Dream? It seems that when a person with a disability achieves any modicum of success, it is viewed as an “inspiration.” “He got a job, he’s an inspiration.” “He moved out, he’s an inspiration.” Instead of being an inspiration because he made a big impact on society, he gets viewed as one for achieving goals on a smaller scale.

I always try to emphasize my disability even during the times when I struggle with it. I want people to actually know about my challenges, rather than call me an inspiration because they don’t understand. I know that I have had a strong desire to move into my own home, but I feel as if the state of Illinois has not given me many avenues to pursue this objective. I make too much money to live in government subsidized housing. Because I have a job and work 27 hours, I am viewed as something “special.” I shouldn’t be viewed as special for aspiring, for being driven, for being myself. That’s just who I am.

I feel the word “inspiration” gives able-bodied people a misrepresentation of the joy we truly have in our lives.  Sometimes I think it’s because they automatically believe our lives are worse. They say things like, “I don’t know how you do it, living with your situation,” or “How have you overcome so much, living with your disability?” I didn’t overcome anything; I live with my disability and I constantly want to make my life with disability better.

It gets frustrating when you know your purpose, but people keep feeding you sentences like “You’re an inspiration” because they can’t rationalize disability being something beautiful and empowering. Rather than asking questions and trying to understand, they use it to change the topic. However, differences make the world go ‘round, not similarities!

In closing, please don’t call me an inspiration. Just call me Justin Herbst!

Justin Herbst - young man with cerebral palsy

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 18, 2016
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