Tuesday, July 19, 2022

Living long (and well) with disability


In the words of the inimitable Bette Davis, “old age ain’t no place for sissies.” I wholeheartedly agree! Growing old while living with challenges to daily living, such as conditions like cerebral palsy pose, requires one be of ‘strong stuff’. Internal fortitude is vital to survival of the less fit.

Those of us ‘of a certain age’ through years of several times daily physiotherapy, who did learn to walk, also learned an array of skills that paved the way to independent living. To say that I was and am fortunate is an understatement. I would not be where I am to day from a health/medical standpoint, were it not for the diligent years long commitment of my Mom. My two eldest siblings put me through my paces a time or two, accompanied by likes of Hank Williams or Connie Francis. Mom preferred the crooners like Bing Crosby, while Dad was into classical. Music, music, music made the legs go round and round til they were strong enough to stand on – putting one floppy foot in front of the other. Off I went. I’m still going!

I then began to think about a burning question. Who was/is the oldest person in Canada living with cerebral palsy, regardless of type, of which there are five – spastic, ataxic, athetoid, hypotonic, and mixed? Each type is classified by a unique set of symptoms.

Patricia Hamilton, called Teedie by everyone who knew her, was born in 1924 with severe spastic cerebral palsy. Third of 10 children, 5 boys and 5 girls, Teedie’s father, Dr. William Gordon Hamilton, was the doctor in the village of Westport, Ontario. Her mother, Caroline, was a local schoolteacher. By comparison, I’m considered much higher functioning in terms of mobility given only my legs were involved. Ms. Hamilton and I have a few things in common. Our fathers were doctors and our mothers were teachers. We grew up in in a large family; I am #7 of 5 boys and 3 girls. Today, 3 of us remain; me, an elder sister and an elder brother. Teedie’s father, like my own, accepted barter for medical services, which worked out well for us; lots of farm produce to feed a large family. Other locals provided trades skills; one fellow built a tricycle for me that allowed me to safely pedal around the main floor of our huge home on Church Street, in Bath, NB. For outside use, another built a walking frame, similar to that found in physio departments of hospitals, so I could practice walking while taking fresh air. Today, I have the lung capacity of a marathon runner.

Like Teedie’s parents, mine never considered having me institutionalized. I attended school, driven by my mother; on the occasional ‘snow day’, I still had work to do at home.

Now that I’m on ‘this side of 70’, I’ve given up doing a lot of things that require sound balance as I know my limits and respect the changes aging creates. I’m a work in progress!

Teedie lived to the ripe old age of 97, spending the last years of her life in a nursing home in Ontario. The documentary about her is an important contribution to breaking down attitudinal barriers and enhancing awareness of the needs of those aging with disability, whether in their own home or in government sponsored care.

Bernadette Rivard was born with cerebral palsy in 1931, living at home until age 31 when her care became beyond the ability of her family. Fears that she wouldn’t survive were replaced with the reality that she thrived. What is remarkable is that Bernadette lived in this nursing home for more than 50 years, making her one of the longest residents of a long term care facility in Ontario.

Though dependent on others for care, Rivard managed to leave a lasting impression on family and friends over her 83 years. She died on May 14, 2013, having lived, since 1962, at Pioneer Manor, an Ontario nursing home. She was predeceased by seven siblings.

My goal is to live well, with good eats and exercise so I can stay mentally engaged, never defined by labels. Maybe I’ll see 100 candles on a chocolate cake!

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 Carla MacInnis Rockwell



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