March 1 is International Wheelchair Day, an annual event to celebrate the positive impact a wheelchair has on those that use them. I have to say I’ve had a complicated relationship with the fact Braeden needs a wheelchair. Thank goodness my feelings, his needs, and the variety of wheelchairs available have all evolved over time.
When Braeden was first diagnosed with cerebral palsy I remember my first questions was “will he walk?” I still think it’s a natural question for a parent to ask but over time I’ve realised there are other skills far more important than walking. A wheelchair has indeed provided him with the mobility he needs and being non-verbal has been a far greater barrier to inclusion.
International Wheelchair Day
When preparing to write this post I went through the photos on my laptop looking for a picture of Braeden in his first wheelchair. I couldn’t find any. I turned to our photo albums where all our film photos are stored, and I found lots of photos of our travels with Braeden at the age when he had a wheelchair and yet only one or two shots of him in a wheelchair. At first, I thought I must be missing something and then it dawned on me, this was a period in our lives when I did everything possible not to included photos of Braeden in his wheelchair. It was the time when I was still learning to accept that a wheelchair would be part of our lives and Braeden would most likely need one for his mobility forever after. That acceptance is a process and for me it didn’t happen overnight. So there’s shots of Hubby carrying Braeden, Braeden sitting on our laps and photos of him sitting independently but the wheelchair is nowhere in sight. It took some digging, but I eventually found a pic of my parents with Braeden in his first wheelchair. To be honest I was keen for Braeden to stay in his pram for as long as possible. I felt that while he was in the pram I didn’t have to explain to strangers about his disability. As soon as we switched to a wheelchair, I felt we were inviting curiosity, questions and those stares. People were keen to know why such a young child was in a wheelchair. I wasn’t ready to have to explain something I was still grappling with.
Fast forward many years and now I see the wheelchair as something which provides Braeden with independence, a way he can show his personality and get around. Thanks to the evolution of mobility equipment we’ve been able to continue to go to the beach, tackle nature trails and water parks. The wheelchair has allowed Braeden to keep moving and for us as a family to see the world. We were fortunate in many ways with the timing of our needs. As Braeden was getting heavier and trips to the beach became more difficult, the first beach wheelchairs were appearing.
They were basic to start and although better than nothing, they were difficult to push across the sand. We didn’t care at the time, we were just thrilled that our walks along the beach weren’t a thing of the past. It was certainly much easier than trying to push a sand on the beach.
When Braeden was gifted his Sandcruiser beach wheelchair we felt we had the Rolls Royce of beach chairs. It was also wonderful to see that designers were looking beyond a one-size-fits-all approach to recreation equipment and a variety of options began to emerge (see the Sandpiper chair Amelia is sitting in which is designed for younger children). Extra accessories were also becoming available for people needing extra postural supports.
The availability of a Hippocampe at a water park gave us a fun day out and again, we are pleased to see recreational mobility equipment available to loan for free.
Although the TrailRider is not technically a wheelchair, it acts in the same way. It gives users the independence to go off-road and get into nature. It again proves that mobility equipment is more than just a functional item which helps people with limited mobility get from point a to point b. It’s something that opens up opportunities and allows friends and families to experience nature together.
When Braeden got his power wheelchair he was a danger to all in his path, and probably those who weren’t in his path too. He had no idea of direction. Having a power wheelchair allowed him to build up skills, including getting a greater understanding of spacial awareness. Learning to drive it with precision was an achievement to celebrate and certainly gave him a great sense of freedom.
Over the years Braeden’s unique wheelchair design finishes on his wheelchairs have opened doors for him to be included. People want to interact and they often don’t know how but Batman wheels or Superman arm rests have proved a great conversation starter.
Adding off-road tyres helped us travel to the Northern Territory and many places that would otherwise be difficult with the usual skinny manual chair tyres.
Grassy ovals and gravel paths are all conquered with these beauties.
We added a FreeWheel attachment to Braeden’s wheelchair and combined with his off-road tyres it helped us navigate some tricky scenarios in Fiji.
A wheelchair has definitely changed our lives in many ways. Everywhere we go we look for a ramp or elevator and our car choices are determined by what will fit Braeden’s wheelchair. Even which support workers we use is determined by whether they have a car that will fit Braeden’s wheelchair, as his chair doesn’t fold. When we travel it’s an extra consideration and we need to allow more time in most places for navigating the system with a chair. But if you’ve been following our family for a long time I’m sure you’ll notice that you see Braeden’s wheelchair in just about every photo. I don’t know when my acceptance grew but I’m glad it did. Braeden is independent in his chair and although I share photos of him working out in the gym and walking, the effort required for him to walk means it will never be his main way of getting around. It helps that he can walk with assistance and do a standing transfer. I encourage anyone that can work on this to do so but a wheelchair makes getting around so much easier for him. If we could remove some of the societal barriers that make access harder that would make it even better for him. I think we need to make access easier everywhere, remove the pity looks and stares regarding someone being in a wheelchair and change our language. There is no room for wheelchair-bound in our house. Even a person totally dependent on their wheelchair gets out of it sometime and that same wheelchair provides them with independence when they are in it.
All of Braeden’s wheelchairs have been put through their paces and they’ve always had to be a carriage built for two. From when Amelia was little she wanted to hitch a ride and nothing much has changed because these two kiddos are so close.
And finally, and most importantly, Braeden also grew to love his wheelchair. He used to get upset if any other kids tried to use it, he seeks it out when he’s tired at the gym and enjoys wheeling himself around.
So on International Wheelchair Day, we’d love to hear how others view a wheelchair if you’re happy to share either in comments here or over on our Facebook page.