Decorating My Wheelchair for Christmas Changed How People See Me
I am a 21-year-young woman living with multiple sclerosis, diagnosed on December 21, 2015. Great Christmas present, huh? I’ve managed to go from having an undiagnosed disease from at least the age of 13 to now not being able to leave the house without my wheelchair. There was a fast progression from invisible MS, to walking stick, to four wheeled walker to wheelchair. But only a manual wheelchair that someone else has to push because I have so many symptoms that prohibit me from safely “driving” a motorized aid.
With the progression of each aid, society’s overall perception of me changed. From those in the streets to those I called friends and family, some were long gone, believing my disease was faked or “put on,” and the other half believed I had sinned in order to be diagnosed. With the walking stick, people often believed they had the right to ask what injury I had, treating it similar to crutches. It was very hard to “forget about my illness” when I constantly had people asking why I had the stick, or I had to come up with a lie, and I’m not that kind of person, so I found myself constantly talking to strangers about my illness. In one way that’s good, because it’s gaining exposure for MS being a disease that can potentially affect anyone at any time in their life. But at the same time, I felt like I was stuck on a loop and couldn’t escape “MS talk.”
Then there was the walker. I had a man chase me down the street and lay his hands on my walker, stopping me from walking any further while on the phone with the police. He believed that because I was young and with a walker, the only explanation was that I had stolen said walker from an elderly person. So his friend was looking up and down the street for said frail elderly person while I had to “prove” over the phone to the police that I had MS, which those of you with invisible or even visible illnesses would understand is difficult. Finally I was left alone with no apology to walk home after a long day at university and feeling rather nude, no longer feeling my walker was a sign to the rest of society that I was struggling and to step aside, but that it was a magnet for abuse. And I was right. A few weeks later, I was spat on when walking across the street because I “disgusted” someone with my disability.
Now in a wheelchair, not only do I get looks, but the person pushing me gets glum looks of disparity. We are happy people. We joke around. We laugh. We eat. Thanks to alemtuzemab, I’m left with a meatless, gluten-less, sulphite-less, dairy-less diet — but my friends, carers and I eat out at a selected few restaurants and enjoy ourselves.
This year my best friend and I decided to decorate my wheelchair. People stare already, so why not bring Christmas cheer to them when they do? We went to Kmart, bought a $15 felt bag in the shape of a sleigh and she got cutting, sewing and hot glue gunning. And voila, we had a sleigh to go on my wheelchair.
We shared the page on Kmart Hack and Advice pages on Facebook and went viral. We had people sharing stories of themselves, their children, their parents, their friends, the people they love and loved. Christmas can be a challenging time for people and they said we brought a smile to their faces. My friend and I now have a Facebook page and Instagram account to show our ongoing endeavors, but our Christmas cheer had not yet been spread offline.
Donned with a Santa hat and she with antlers, we went Christmas shopping at busy shopping centers to bring cheer to kids and adults. By doing so, we are showing that people with disabilities can be fun and have fun. Our lives are challenging, but not forever glum. Merry Christmas to you all!