Photo: Honza Soukup/Flickr
It’s never difficult to find topics of discussion with regard to growing up with and growing old with disability given that I often draw on my own childhood experiences to address issues of peer acceptance and inclusion, both in school and in the community at large.
While I was growing up in rural New Brunswick, in the small village of Bath, I never gave much thought to my ‘differentness’; I had nothing to compare to in terms of ableness though I did know that there would always be things I couldn’t do with my brothers and sisters and my neighbourhood playmates.
Because I never had others of similar age or in like circumstance with whom to interact, I simply engaged as best I could in spite of the awkward gait and lots of falling down and getting back up again. It’s just the way it was in my world when I was a mini me.
Fast forward to today. As I read about various programs that are geared and adapted to children with unique abilities or challenges to mobility that compromises inclusion, I often wonder what my life would have been like if there had been other children like me, floppy walking little girls and boys, with whom I could have shared playtime. For all those years, I was essentially on my own. I’m pleased to say that I survived relatively unscathed, though there’ll always be that ‘what if’.
Recently, I read about Emma from Greenwich, in the UK, who set up the Wheelie Gang because her daughter, Evie, a wheelchair user, had no friends in her school who shared that life circumstance. Emma wanted to change things by organising, in a loose fitting way, a group of children who shared a commonality - they were ‘wheelies’. The response to her call for kids was overwhelming. Emma and Evie hope to expand the Wheelie Gang across London. Currently, they meet at the local community centre for disabled-friendly sports and crafts. What a great self-esteem builder!
In large cities, during the years I was growing up in the country, the number of children like me, from infancy through grade school, would have been greater and their access to various services would have been more enhanced and elaborate than what was available to me.
I’m sure they would have appreciated and benefitted from having groups and clubs that were comprised of youngsters like them. I know I would have. Children who used crutches, walkers or wheelchairs or divide their time amongst a range of mobility aids need to know they are not alone. Using several mobility devices during those early years lends itself well to broadening the horizons in terms of experiencing a fuller life while at the same time accommodating improved, more stabilized movement. With the passage of time, a child will often settle on the aid that provides the most stability and ease of movement. For me, it was and still is axillary crutches. A single cane made me nervous and increased my panic about falling.
With advancements in medicine, notably orthopaedics and rehabilitation/physical medicine, opportunities for children with mobility challenges were expanded. As mainstreaming became the norm, the isolation felt by so many children who were differently able was minimized. So, too, was the isolation felt by the parents of children with ‘special needs’. Many found a common ground in organizing social gatherings, out in the community; picnics in the park, gatherings at the local swimming pool. Even an informal, make it up as you go basketball game for little ones just learning to use their wheelchairs. Programs such as this will contribute to cutting through the exclusion felt by youngsters who use wheelchairs or other such assistive devices.
As children with disorders like cerebral palsy get older and bigger, their differences become more apparent; while crawling or pulling themselves around on the floor, along with a non-disabled peer, the deficiencies aren’t fully appreciated by Mom and Dad. Once it’s evident the child can’t stand up yet or do any of those ‘typical’ things, the ‘what if’ plays out for the parents, mostly Mom as she’s often the more hands-on parent. The ‘what if’ game is exhausting.
As schools around the province get underway, it would be my hope that administrations might look into connecting kids who are differently able so they may look to developing their own after school groups where moving a bit more slowly isn’t going to matter. There are always going to be greater numbers of children without challenges in any classroom composition; that’s reality. But what can also be a reality is recognition of the value of expanded access and inclusion outside the classroom. What starts out as a wheelie gang could expand to include children who have no disability at all but want to participate. Having fun is the ultimate goal.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
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