Personal stories tell disability history
TheStar.com – healthzone.ca – Personal stories tell disability history
April 16, 2008
When she was 13, Sheila Essex was put on a bed that sounds straight out of Guantanamo Bay. With every breath she took, it tilted her from upright to upside-down and back.
The year was 1950. Essex, like thousands of others battling the paralysis of polio, was in an institution. The bed was designed to make her breathe by shifting her diaphragm, she says.
It was one alternative to the massive tubelike iron lung, another step on the way to forcing limbs and organs to overcome polio. It would be years before the damage inflicted by these forced efforts would be acknowledged.
“The pressure on me to breathe without (a ventilator) lasted five years,” Essex says â€“ until her father put his foot down. With the help of a newly invented chest-size breathing apparatus, Rev. Roy Essex ignored the protests of the institution’s doctors and took his daughter home.
“That was the beginning of the rest of my life,” says Essex, now 71 and a grandmother. “I could breathe and sleep without gasping for air.”
For her father, too, it was the beginning of a determined effort to show that people who use specialized equipment to take in air can and do flourish living independently. His story is one of a series depicted in a new exhibit opening tomorrow at the Royal Ontario Museum.
Produced by Ryerson University’s School of Disability Studies, “Out from Under” reveals the intensely personal stories behind simple words and images that shaped this country’s disability history.
There are the three long-term psychiatric patients â€“ Audrey, a seamstress; May, a housemaid; and Mathilda, a laundry worker â€“ whose untold hours of free labour were a key factor in the ability of hospital administrators to cut costs. Up to the 1950s, such work was deemed therapy.
Stark black and white posters from a 1920s “mental hygiene” campaign proclaim: “The feeble-minded can be divided into three groups: Idiots, with a mental age of less than 3 years; imbeciles, with a mental age between 3 and 7 years; morons, with a mental age between 7 and 11.
“The moron group … has contributed greatly to criminality, vice and pauperism,” it concludes.
Sixteen identical sweat suits mark the monotony, anonymity and powerlessness of being confined to an institution.
A trunk belonging to a 7-year-old boy, one of almost 10,000 people sent to the Orillia Asylum for Idiots between 1876 and 1950, speaks to “the journey those deemed not good enough for normal society were often forced to take.”
A program from a 1948 Shriners’ circus plays on pity for “crippled kiddies,” whose hearts are “full of gratitude” when there’s money for surgery to help “fix” them and make them “normal.”
The death certificate of Kristen Anne Inwood, 18 days old, represents 36 infants at the Hospital for Sick Children whose lives were ended by a deliberate overdose of the heart drug digoxin.
A Braille watch pays homage to Mae Sophia Brown, who became the first deaf-blind Canadian to earn a university degree â€“ a 1972 bachelor of arts from the University of Toronto.
In all, there are 13 separate objects, including the type of ventilator Essex used to take his daughter home.
He was told Sheila would die if she left the institution because no one would come to fix the American-made ventilator if it failed. In the small hours one morning, that’s exactly what happened.
“I don’t know how he did it, but my father got someone in New York on the phone in the middle of the night and whoever it was talked him through fixing it,” Essex recalls.
Her father subsequently went down to the States, learned all about ventilators and spent the next 30 years travelling the length and breadth of Ontario as a volunteer repairman for the March of Dimes.
The ventilator in the “Out from Under” exhibit was contributed by Karen Yoshida, an associate professor in the physical therapy department at the University of Toronto, and author/activist Audrey King, who met Essex as a teenager.
“He flew in from Toronto to fix my respirator, an `embarrassment’ I … hated in my adolescent struggle to be `normal,'” King writes in the detailed catalogue accompanying the exhibit.
Only years later, “did I realize … the embarrassment was not the assistive device, which in reality liberates … It was â€“ and still is â€“ the bureaucracies and support system inadequacies that confine people and rob them of freedom and choice.”
“Out from Under: Disability, History and Things to Remember,” curated by associate professor Kathryn Church, professor of distinction Catherine Frazee and Melanie Panitch, director of Ryerson’s School of Disability Studies, runs until July 13 at the ROM.
It is fully wheelchair-accessible and includes an American Sign Language video podcast, and descriptive audio podcasts.
For information, call 416-586-8000 or go to www.rom.on.ca.