How 'Scarman' Helped Me Understand My Daughter's Disability

Five years ago, my daughter was born with a rare condition called arthrogryposis as well as additional cognitive delays. My wife quickly gravitated towards the internet support community to learn as much as she could, while I was feeling stuck, asking myself the larger questions about my daughter’s path in life. Right after her first birthday, we found ourselves attending a National Support Conference for Arthrogryposis. It was there I met “Scarman.”

Ward “Scarman” Foley was born with arthrogryposis and has spent the last 30 years giving speeches across the nation and abroad. He is also a published author and hospice volunteer. He spoke at that conference and engaged new parents, old parents, teens and adults who had never met another person with the same condition. These were his words:

“My Mom and Dad taught me, when I was really young, that we’re all given life. I wasn’t given a bad life or a good life. That was going to be up to me.”

For the next 40 minutes, Ward told stories of how he spends his days helping children with disabilities. He created a doll called “Scarman” that he sends out to children from over 46 countries at no cost. The children draw their scars on the doll to make it like them, which then helps the children love themselves. We made our daughter her own “Scarman” at that conference.

Ward was warm, inspiring, funny and exactly what I needed to hear at that moment in my life.

After his talk, he greeted us by kicking his leg up in the air by his head while looking at us saying, “Betcha didn’t know I do that.” We had a short conversation where I thanked him for putting things in a funny way I could relate to.

Months later, I received a call from Ward. He needed to talk to someone about comedy, and I was someone he knew who worked in comedy. Ward was recently confronted by a group of parents who were offended by some of the jokes that Ward told during one of his talks. This can happen in the disability community. Some parents have to fight so hard for their child so often that they forget to laugh. They forget to relax. I told him how important laughter is. I told him how he as able to lift me out of my “what’s it all about” nonsense through the power of humor, and I told him how I ultimately think you can reach more people with a laugh than a tear.

Years have gone by since that conversation, and I now know the path for my daughter. Her path is simple: To live an awesome life. Her life. And she does it well.

And now, I would like you to meet my friend, “Scarman.”

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