Eliza McIntosh is Ms. Wheelchair America 2017, has played for the USA Paralympics team, and broke the Guinness World Record holder for longest distance continuous wheelie in a wheelchair.
Dr. Danielle Sheypuk is an American psychologist and advocate for people with disabilities, and the first woman in a wheelchair to “walk” the runway at New York Fashion Week.
Rebekah Marine, aka “the Bionic Model,” was born without a right forearm, but has defied all odds in the fashion industry. She has been featured in TIME, People magazine, US Weekly, Cosmopolitan and many more.
Who doesn’t love a good Christmas story? Tales of fun and festivity and family are a vibrant part of the season. This really is a wonderful time of year.
But some festive moments can be more difficult than others. When augmentative communication is part of your everyday life, holidays can be a little bit more tricky. That’s where these stories become more than just stories.
A handful of families of children who use CoughDrop for AAC have decided to share their experiences, showing ways AAC helps them have a happy holiday. Maybe their Christmas communication adventures will inspire others to engage more fully in helping holiday voices to be heard and make this season a little more merry.
“I think one of the most important things we do is to make sure our daughter has access to her device as much as possible. She surprises us with how creative she can get with using it. On the way home from buying a Christmas tree, our daughter said “Like, Forest.” She doesn’t have Christmas tree on her speech boards, and it was neat to see her figure out a different way to tell us she had a good time.”
“As we were decorating the tree, I found the coinciding button for each item as we put them on (star, candy cane, gingerbread man.) Our son was pretty funny about that and would wait impatiently for me to finish hanging each object so he could hurry and find the next one. “
“One thing we do every year during December is go caroling. In order to include our oldest daughter, we have recorded our younger daughter singing some Christmas songs. We change them so they’re ever so slightly lower to match our older daughter’s voice, and then put them on a button on her device so she can sing with us. It’s been so fun to see her face light up when we go caroling and she can sing along with the family.”
“Music is my son’s thing, and he has an obsession with Mannheim Steamroller, but he was getting frustrated when I couldn’t figure out which song he wanted to hear. We use the Amazon Echo to run a lot of things in our home, so we actually programmed in his top 5 songs, and he can push a button that says “Alexa, play ‘Deck the Halls,’ by Mannheim Steamroller,” and boom. Alexa listens and plays the song. Much less frustrating, and he gets to be independent.”
“Holiday gatherings tend to be noisy and overwhelming. For the most part our child does well with crowds, but sometimes she gets overwhelmed and it’s important to her that we are observant to what she’s feeling. Taking her on a walk or out to the hall is a common occurrence and allows her to be a part but also get a break. We’ve learned to be OK with missing out on some things when it’s going to be too hard on her.”
“Our son hates the unexpected, so before we do anything out of the ordinary (have family over, go for a drive to see lights, etc.) we always show our boy what we are doing, and try to be as specific as possible. Not just “someone is coming over,” but “Grandma is coming over in her white car. We are going to eat dinner.” For some reason, if he sees it laid out on his speech board for him rather than just hearing it verbally, his anxiety seems to be less. It also gives him a chance to respond (usually with “I want Doritos,” but still…)”
Happy Holidays! May your season be filled with the voices of those you love, however they communicate.
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To the store manager I watched disrespect his employee who happens to have disabilities:
You are my mom’s worst nightmare. And you’re mine, too. You should be ashamed of yourself.
Yesterday afternoon, my mom was shopping at your store (as she often does.) With six children waiting at home, a busy holiday season with many tasks to be done, and a schedule that doesn’t leave a whole lot of room for flexibility, my mom easily could have shopped at the closer grocery store down the street. But instead, as a mother of a child with a disability, my mom consistently makes the conscious effort to drive a few extra miles to shop at the store you manage because she believes in your mission to employ people of all ability levels.
However, yesterday was very different. All morning my mom and I watched news anchors warn of the subzero temperatures that we’d see the rest of the day and a few of the coming ones, too. “Being outside for more than a few minutes will cause frostbite,” they cautioned. It was even suggested that we don’t let our dogs outside to relieve themselves. I’m sure you heard that, too, or maybe even experienced it for yourself walking into work in the morning.
You should have been the first to understand when one of your employees who happens to have a disability came in from pushing carts outside, shivering. With a beet-red face, most likely numb all over, he told you he needed to take his break to warm up. But instead of understanding and encouraging this man to do what he needed to do to stay safe, you stripped away his dignity, yelling at him to “get back outside” to gather more carts while you proceeded to sit in a well-heated store and probably go take your own lunch break.
You see, I have a brother. He’s nearly 8 now. He loves to play sports and he’s learning to read. He likes art and counting and watching “The Polar Express” no matter the time of year. He’s so excited for Christmas this year, but I think more than anything, he’s anticipating giving my other brothers, parents, and me the gifts he picked out for us. Now I don’t know if you have children, but for an 8-year-old, that’s pretty amazing. He sings songs and has a ton of friends — in fact, at his school, they call him “Mayor” because his heart is so big that it’s physically impossible for him to walk by someone and not give them a huge hug and a warm greeting.
My little brother happens to have Down syndrome, and as his big sister, I used to feel consoled that your store hired people like him — that you saw ability rather than disability. But to be completely honest, my mom’s experience at your store yesterday has me questioning whether you hire people with disabilities because it looks good for your store, or because you really see their value to society and are committed to helping them grow.
I am not writing this to get you into trouble or make you upset. I don’t want you to begin to feel sorry for people like my brother, and I do not want your pity. What I do want from you this holiday season, though, is for you to open your heart. Be a little more patient. Strive to understand a bit better. Behind each and every person is a unique set of gifts and talents, shortcomings, failures, and a family who loves them to the ends of the earth and has worked extremely hard to get their sons and daughters to where they are now.
My trust is shaken today, but it is not broken. It will take more than one heartless act from you to do that. I have faith that your store, as an entire institution, can work on this problem and reevaluate how you talk to and treat your workers with disabilities. Above all, they are human. Just like me. Just like you. Maybe you had a bad day, or a bad week, and believe me, we’ve all been there. But would you have demanded that employee to go back out in subzero weather yesterday if he did not have an intellectual disability?
This is about power, sir. Please don’t abuse yours.
A Loving Sister
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