When I was born in 1954, the diagnosis of spastic diplegic cerebral palsy came within the first year, by Alexander Torrie, an orthopaedic surgeon trained in Scotland and paediatrician, Barbara Robinson-Watson, both practicing at the former Victoria Public Hospital in Fredericton, NB. Dr. Robinson was the only woman in her class in 1947.
My parents weren’t long getting everything lined up to do battle with that thing that insulted my brain.
Over the course of my early years there was a parade of ugly brown boots into which equally ugly heavy metal braces with leather straps and knee pads were clipped. For a tiny girl, that added weight threw me off balance. I was exercised 4 times/day for 12 years, had knee surgery at age 8, and have the distinction of being the then Forest Hill Rehabilitation Center’s first child patient back in 1966. At that time, they treated stroke patients and a few with spinal cord injuries. No paediatrics. I was a trail blazer. The facility opened in 1958 with Stan Cassidy being one of its first champions. Years later, it went on to be named after him and with the passage of time, relocated to the current Dr. Everett Chalmers Hospital. My last stint as a pint-size summer patient was spent at Rosary Hall, being taxied back and forth by my favourite nun, Sister Monica Guest. Her sister, Marie, my family’s housekeeper when I was a child was a great friend to me; one of many who influenced my moving forward through a life that was marked by a ‘different’ ableness. Next year, I’ll mark 70 years of upright mobility. There will be cake!
It was during my last extensive therapy summer that I was freed from braces. Oh, what a relief it was. I still used crutches, of course, to ‘straighten and slow’ my wobbly gait. Face-planting on gravel would never be a good look.
I believe that my childhood experiences would have been enhanced with the limited/outside use of a wheelchair, to get from A to B a bit faster. ‘Walk this way’, was cumbersome and exhausting. Over the decades, my shoulders, elbows and wrists took a hit because it’s not ‘natural’ to have that constant hyper-extension. There were penalties paid for independent movement.
Times and technology changed how those ‘leg irons’ look. Today, moulded plastic orthotics make life so much easier for all those children who came after me. My first experience with them was when I was 28 years old when it was felt I should return to orthotics to correct a gait compromised by age and a wonkier spine. The joy never ends. Their use was short lived as I was lopsided, given only one foot required heavy metal correction and the other the slip in the shoe plastic orthotic. I think I got 6 months in, then called the whole thing off. I was an accident waiting to happen.
My young Facebook friend, Eli, who recently passed away, started wheelchair training at the Patricia Neal Rehab Center in Knoxville, TN, and at 2.5yrs old, the youngest child with whom they had use the microlite technology. According to his Mom, “he drove with only switches for quite a while, training for a year. The insurance denied the chair he needed so we did a fundraiser to pay for his first.”
Later, a more mature Eli got another set of wheels.
The struggle for families like Eli’s is real. The right equipment enhances quality of life, notably the learning experience of early education with peers. Being able to move around boosts emotional and physical development given that fitting in is fundamental to life experience. It’s amazing what appropriate mobility aids can do for a child who does not walk.
So, what becomes of orthotics and other supplies we no longer need but are in good shape? Lots of things aren’t custom made so could be used by anyone with a few minor tweaks. The ideal solution is to get the medical supplies that you no longer need to people who can use them because they are poor or have little or no access to medical care. Many organizations will take no-longer-needed, or even better, never used medical equipment and supplies from hospitals, doctors, and dentists but not all take donations from individuals. I gave orthotics to a donations scheme for impoverished countries. My wheelchair, after 28 years of service, was donated to the Red Cross for their program.
Should you have equipment to rehome, the best course it to advertise, with description and photographs, in local newspapers and grocery/shopping center message boards. Be clear on how you want folks to get in touch with you so that interactions go smoothly. If you use social media, that is an ideal place to connect with people who can benefit from what you have available. The opportunities are endless.
Locally, small donations can often go to nonprofits like homeless or women’s and men’s shelters, so please check with the agencies in your communities who may be able to pick-up or have convenient drop-off locations. Yes, homeless shelters can make use of things like crutches, canes and walkers, though space may prohibit keeping even one wheelchair on hand. Calling ahead to find out how what you have can benefit their clients is a way to reach out to ensure you’re networking in an expeditious way.
Knowledge is power.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at mailto:carmacrockwell@xplornet.ca
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