On this international day of persons with disabilities

Posted by Heather Krill in Life After Paralysis on December 05, 2018 # Health, Advocacy and Policy, Caregiving

December 3 was the International Day for Persons with Disabilities, and the theme this year is empowering persons with disabilities and ensuring inclusiveness and equality. Two emails, both connected through the Reeve Foundation and sent the very same day, empowered me. One was a message from Anna Chamberlain, who coordinates our blogging, informing us of a bill that could potentially change the way insurance companies justify what they will and will not cover for those who use manual wheelchairs and rely on specialized equipment. The idea that my husband’s manual wheelchair with knobby tires, needed to push around in the snow, could be considered an “accessory” is essentially asinine.

The other email came from Charles Schwab, a writer, expert in Universal Design and designer of accessible homes, who reads my blogs and sometimes sends me questions to consider as he is working on another book. This week’s question: “What is the biggest struggle or hurdle with home design in the bedroom or bathroom and how can I (as a designer) help you overcome it?” I appreciate these efforts of other people on our behalf, “our” meaning people with disabilities and the families connected to them, especially this time of year when my patience is thin and my tears plentiful. After all, it’s the holidays and everything should be warm and full of mistletoe and sugar cookies and holiday cheer, right?

However, the idea of shopping overwhelms me, especially after a hectic day of school, on a dark, snowy night with tired children and my wheelchairing husband in a desperate search for a new microwave. This is not even the fun kind of family shopping, like the fictional version portrayed in every Hallmark holiday movie-- the car is always clear of real snow; the children chat lovingly together; music plays on the radio making mom and dad smile warmly at one another; the wheelchair...Oh, wait...there is never a snowy or mud covered wheelchair that needs to squeeze in the back of the family car on Hallmark holiday films. The irony is that when my family piles in one car to go anywhere, there is not really any room for anything else, including groceries, school bags, let alone a microwave. However, our microwave is just one tool that helps Geoff to be more independent, especially when it comes to feeding our family when I’m not home. Right now the microwave is everything. In the big scheme of world conflict, poverty, and general every day human tragedy, this should not have impacted our world as much as it did. Yet, after we visited Lowe’s, unsuccessful in our microwave quest, I reloaded the wheelchair piece by piece in the back and openly cried.

Our kids were fighting in the back seat as they, for obvious reasons, did not understand our urgency for a new microwave. Geoff sat patiently in the front seat with an understanding smile, full of dimples and love, “I’m sorry, honey, that this is such a pain. I know it’s not what you wanted to do on a Monday after work.” And it’s not, and I should be able to accept the challenges life throws us as easily as he does, yet I can’t. The kids are talking about their Santa wishes for hoverboards and trampolines; while I should be grateful they want active, outdoor experiences and not gaming systems or iPhones, I’m also stressed.

Yet, ultimately, we find a microwave. The snow stops blowing and my hands take apart the wheelchair to load in the back. One kid falls asleep on the way home, and the other is content to pet our yellow lab, who, given his high level of intelligence and intuition, is also probably questioning whether any of this was a good choice. Once we are packed up and warm and listening to the carols on the radio, I’m reminded that this is our version of Hallmark; no one is crying; we are safe, snug, and warm-- and most importantly, we are together. Oh, and there is Christmas music, and better yet, a really cool manual wheelchair in the back we are grateful to own and operate and take apart whenever needed so we can move our family from one place to the next with relative ease. So that when the tears come in a Lowe’s parking lot, or those other moments of frustration, we are empowered by the acts of others. I take a picture of my family with a sign that will be used to persuade Congress to #protectCRT. I respond to Charles Schwab’s email and feel like my words and experience may make a difference to someone else. The tears end. The Christmas music plays on.

Heather Krill is a writer- wife- teacher-mom who lives in the White Mountains of NH with her husband, Geoff, a paraplegic and professional skier, and their two children, Carver, and Greta who are 8 and 7. Please check out her novel True North, website www.heatherkrill.com, author FB page Heather Krill, and @heatherkrill1 on Twitter.