Shape

Tyler's Stories

Shape

Dad’s Lesson Learned

Tyler and I were driving home from an Inclusion presentation. I don’t remember if it was a keynote presentation or a training. I don’t remember who it was for or where we were. I don’t remember if it was one Tyler did alone or one of the many we did together. I don’t even remember the context of our conversation. But I do remember it leading to Tyler’s verbal disappointment in parents who felt the need to “fix” their children with disabilities. And I will never forget what Tyler said next …

Tyler stated if there was a pill available that could cure cerebral palsy like a disease, he wouldn’t take it. He wouldn’t be interested. He was okay with who he was. I was so taken aback. As a dad, I have always wanted what was best for my children. We all do. There has never been a time, any time, in Tyler’s life when I wouldn’t have willingly, even gladly, changed places with him to give him a typical, healthy body.

I explained to Tyler that parents just want their kids to have everything, to not have obstacles to their happiness. He didn’t buy it. He was adamant. We are who we are. I didn’t understand and it took me awhile to finally “get it”. And when I did, I was embarrassed that I didn’t understand sooner.

Disability is just a natural part of Life, it doesn’t define us. People with disabilities aren’t broken. They don’t need to be fixed. It’s just a piece of who they are, like receding hair or green eyes. None of us are alike in our abilities or our disabilities. Tyler was very comfortable with who he was. Even if he could, he wouldn’t change anything about himself … … …

Neither would I. He was Tyler.

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The Metamorphosis

Tyler gave dozens of keynote addresses at state, regional, and national conferences from a couple hundred to a couple thousand participants. I happily played the part of Tyler’s manager, chauffeur, and audio-visual technician. In this role I was afforded a very unique perspective. My up-front seat allowed me to not only perform my AV duties close to the stage, but also gave me a bird’s-eye view of the audience. From there I could observe the inevitable metamorphosis.

Typically, the presentation would start with an introduction from the organization’s emcee, without Tyler present. The “I’m Tyler … Don’t Be Surprised” video would be played. And then Tyler would come onstage and begin. The attitude of the audience at this time was fairly obvious … “here is a wheelchair-bound, handicapped young man who has done so much in his tragic life”.  Inspiring, yes, but they were visibly uncomfortable with someone in a wheelchair on the stage. Their body language gave them away. Those who were paying attention were mostly filled with sympathy, even pity, for this poor, tragic soul. I could see it in their faces. The others were on their cell phones, or reading the newspaper, or working on next week’s meeting agenda.

But as the presentation continued with a blend of anecdotes, humor, suggestions, and direct instruction, Tyler quickly became real as a person, credible as a teacher, genuinely likeable, and the audience became comfortable with him. Slowly, but always surely, the cell phones were put away, the newspapers folded up, the notepads put away. People leaned in to hear more. As Tyler taught them about Ability Awareness and so much more, the light bulbs began to go off. The sympathetic faces morphed to understanding faces, nodding faces. When Tyler laughed at himself through humorous photos, each with a metaphorical lesson, they became more comfortable with him, relaxed. They laughed hard and learned more than they ever realized. Tyler could read and react to an audience very well. He wasn’t done until they “got it”.

By the end of the presentation, the wheelchair had all but disappeared and the disabilities were just a part of Tyler. The poor, tragic soul had morphed into a delightful, funny, and ever-so-wise young man who happened to be in a wheelchair. A young man with an incredible view on life and how to respect and treat others. They loved him and respected him as a person because they now understood him. The inevitable standing ovation at the end was for Tyler, just Tyler. It was not sympathy applause. The sympathy and pity in the room were all but gone. And then they would line up to talk with this amazing person and have their picture taken with him.

And me? I was now playing the role of the very proud father. I was the one rolling up cords and putting away equipment with a very big smile on my face and tears welling up in my eyes (because that’s how I am). I had again just witnessed the metamorphosis … Tyler changing peoples’ thoughts, beliefs, and lives before my very eyes. It was an amazing experience for me every time, one I never grew tired of.

During the presentation the audience heard Tyler suggest to them, emphatically, that sympathy and pity have no constructive value … they do nothing and accomplish nothing. What people with disabilities need is understanding. Understanding builds relationships, opens doors of opportunity, and puts accommodations in place. They learned it and they lived it, all in the same presentation. We all need to learn it and live it, too.

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