One Year Later…

December 2019:

This time last year Ethan and I began discussing what it would look like to let you enter into our world, our real world. I wondered how I could answer the questions few people have been brave enough to voice. I contemplated how to effectively communicate why conversing about diversity is so important. I thought about the big issues I wanted to discuss: the harm of staring, how to kindly ask your friends with disabilities questions, getting to know the person rather than the syndrome/disability, commitment to those with long term health complications.

When I started writing about life with a syndrome/disability, I didn’t know I was entering into one of the toughest years of my life. I didn’t know a season of health complications was on the horizon. I didn’t know I would need multiple procedures while taking 15 hours of classes. I didn’t know neighbor kids would attempt to pull off my “fake hands.” I didn’t know I’d hear cruel comments about my syndrome that would open wounds from my childhood. I knew that writing about these incidents would let you into our world, but I didn’t know that our world would be turned upside down in the worst and best ways.

As I thought about the topics I wanted to discuss, I read several books on disability studies. If I went to a bookstore, I searched for children’s books about diversity. When I entered a building, I questioned whether the building was really accessible for people with a variety of physical disabilities. I often thought about how we can be more inclusive and why we need to be inclusive: we should all have a seat at the table, even if that means moving some chairs, cutting someone’s food, feeding those who can’t feed themselves (been there), and using shatterproof cups with handles (been there too).

Our one year of writing about life with a syndrome/disability is coming to an end; however, living with a syndrome/disability is a never-ending struggle. We may not write about negative reactions to my syndrome or health complications, but they’ll still be part of our world, our real world. Our encouragement to you is this: be part of someone’s real world. Kindly ask questions. Fight the battle against staring and pointing. Be committed.

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