Register Sunday | June 16 | 2019

Designed to Thrive

Would the deaf refuse new ears? Peter Jickling thinks they might. Arguing against the idea of disability as a liability, Jickling sees handicaps including his own cerebral palsy as differences worth celebrating

When I was learning to ride a bicycle, my family lived in a Vancouver apartment whose doors opened onto the softest, greenest grass I’d ever seen. Every night after dinner, I would head out with my garage-sale bike and practise getting on, falling off and getting on again. Over time, my clothes became less and less grass-stained until, one night, I could finally ride from one end of the lawn to the other without incident. Soon enough, I found myself venturing off the lawn, into a world of hard edges, harder pavement and hills.

The big hill, visible through my apartment window, caught the imagination of my friends and me, and we began staging daily drag races from the top. Right at the foot of the hill was a large obstacle: a raised wooden planter full of shrubs and small trees. Avoiding it required balance, bravery and carefully controlled speed.

My friends would race downhill straight toward it and then, at the last possible second, veer out of the way. I was born with cerebral palsy: to remain competitive in the races, I often had to sacrifice my ability to make the turn. When my front wheel hit the planter, I would fly over the handlebars into the west-coast shrubbery.

This combination of intense enthusiasm and mediocre motor control coloured all of my early adventures. I hurt myself quite often. It was not unusual for me to show up at school with both knees, both elbows and every knuckle scraped. My kindergarten classmates called me the Scab King. But mine was a happy childhood, and one that I would not have traded then or now.

It was a childhood I wish a bioethicist like Laura Purdy could have witnessed. In a provocative 1995 paper, “Lov­ing Future People,” Purdy argues that parents have a moral responsibility to abort children destined to be born disabled. Her argument appeals to a utilitarian moral para­digm by which an action is considered to be moral if it produces the greatest amount of happiness for the greatest number of people. Based on this assumption, she tells us, “We ought to prevent the birth of those with a significant risk of living worse than normal lives.”

Purdy believes that disabled people are fundamentally unable to achieve the same level of happiness as the rest of the population. In her words, “excessive admiration for independence, along with athleticism and narrow con­ceptions of beauty, make life more painful than it need be for many; they are especially problematic for some dis­abled people.”

In other words a special unhappiness pervades a dis­abled condition. “Good health and the feeling of well-being it helps engender,” Purdy writes, “are significant factors in a happy life. When they are absent, our suffering is caused not by our consciousness of having failed to live up to some artificial social value but by the intrinsic pain or limitation caused by that absence.” Again, the implication is obvious: disabled people are just not naturally designed to fit in and to thrive in this world.

Notions like these suggest that, within our soci­ety, a majority of people still possess a fundamental mis­conception of disability. The fact is, Purdy’s perception of the disabled—dignified, unhappy cripples, pining for some unattainable normality—is plain wrong. When discuss­ing the deaf, for example, she tells us that American Sign Language has the potential to enrich the lives of hearing-impaired people, but concludes that “it seems nonetheless doubtful that many deaf people would refuse new ears.” Yet an endnote that accompanies her statement reveals that Purdy is aware that some deaf people would actually refuse new ears.

It may be tempting to dismiss the content of Purdy’s argument as a dated and unfortunate blip on the radar of mainstream thought. However, medical advances in the area of prenatal testing in the last fifteen years have only increased the pressure on parents to address the question of aborting a handicapped fetus. Never before has our society been seemingly so well-informed about the rights of disabled people—yet never before, it seems, have so many fetuses been aborted as a result of impending disability.

Yet, prenatal testing has a moral consequence for the entire spectrum of humanity. The focus on the disabled is almost arbitrary. Why not abort obscenely obese people instead, or those with fatally weak hearts, or sufferers of lupus? Invoke the many facets of our flawed human state and all sorts of ugly questions emerge. Ugliness itself is called out to defend itself. Should the fetuses of unattract­ive or oafish parents be terminated? Where do you draw the line?

Even if it were the case that disabled people are disadvantaged when it comes to chasing down happiness (it’s not), “eliminating” such people would also eradicate their unique contribution to the messy democratic conversation that guides social opinion and government policy. The disabled population has a perspective on the world not easily attained by the able-bodied community. Suppressing it could surely only be harmful to the utilitarian social model that Purdy purports to support. Her argument is a thrust in the direction of homogeneity.

Purdy asks us to resign ourselves to accepting society’s highest values: athleticism, beauty and health. But consider courage and determination instead. Mark Zupan is a member of the US Wheelchair Rugby team, which was the subject of the Academy Award–nominated documentary Murderball; he broke his spine in an automobile accident. When sharing his experience with a group of people who had recently become disabled, Zupan told them, “I’ve done more in a chair than I did able-bodied.” One of Zupan’s teammates offered similar sentiments: “I contracted a neu­rological disorder when I was one. But it’s allowed me to play [wheelchair] rugby.”

Is the human condition to be found in Purdy’s trump cards or in playing the cards each of us is dealt? What inspires us more: Good looks or courage? Healthiness or determination? The example of hard work and devotion that the disabled provide every day is of more use to soci­ety than Purdy’s ideal states.

As Canadians, we should be particularly aware of this. National heroes don’t come much bigger than Terry Fox. Fox was a promising young athlete growing up in British Columbia when he felt a nagging pain in his right knee. Shortly thereafter, his leg had to be amputated due to inoperable cancer. In the spring of 1980, three years after his operation, he set off on his famous Marathon of Hope, a gruelling leg-and-prosthesis run across Canada to raise money for cancer research. Although he was certainly full of courage and athletic determination before he was struck by cancer, his status as a pillar of the Canadian psyche is a direct result of how he responded to his disability.

Five years after Terry Fox’s run, Rick Hansen per­formed a heroic feat of his own, propelling a wheelchair over a distance equal to the world’s circumference. Like Fox, Rick Hansen had been an active and promising young man. Like Zupan, it took a car accident that broke his back to unlock his potential. When I was learning to ride my bike as a kid, Hansen was finishing his journey in Vancouver. I remember joining the thousands of people lining our streets to cheer him home. Hansen, with his paraplegia, was more handicapped than I was. That moment helped me realize the enormous and unique potential available to those of us with disabilities. It is a lesson I haven’t forgotten.

Not only are we designed to thrive; we are designed to thrive in a deep and meaningful way. With luck, future generations will continue to walk, roll, stumble and trip all over this planet. It is our world and it is our responsibility to act as such—and bad news for wooden planters everywhere.