Shattered dreams

By Louise Kinross

A few things collided in my mind this morning.

First I read this exquisite essay by Michael Bérubé about his son Jamie’s search for work. Jamie, 22, has Down syndrome. He’s also a “bright, gregarious, effervescent young man with an amazing cataloguing memory and an insatiable intellectual curiosity about the world—its people, its creatures, its nations, its languages…” writes his dad. Bérubé peppers his piece with vivid images and anecdotes about Jamie that bring him to life.

At age 13, Jamie declared his career goal: to be a marine biologist.

But by the end of Grade 8 he’d scaled back his expectations: first to “marine biologist helper,” then, when asked at an IEP meeting what he'd do for a living, he answered dejectedly: “Groceries, I guess.”

“I’m not sure what I would have felt that day if I had known that he would have to settle for less than that,” Bérubé, a literature professor at Penn State, writes.

Despite a raft of part-time volunteer jobs and minimum-wage positions in a mailroom and doing recycling during his teen years, Jamie's post high school assessment on work suitability “filled us with despair. Factory work, nope; food service, nope (not fast enough); hotel maid service, nope; machine and auto repair, nope.” Trials to see if Jamie can do conference set up or stack shelves in a supermarket don’t pan out.

After two months sitting in the basement watching Youtube, he begins working two, and then three, days a week at the local sheltered workshop. Jamie sets up vials used to collect hazardous materials and makes $8 to $10 a week. Yes, you read that correctly.

Go back to the third paragraph and read Bérubé’s descriptions of a kid who bubbled over with his impressive knowledge and love of sea animals. Then tell me that the thought of him sitting at a table organizing inert containers that have nothing to do with him isn’t shattering. A horrible waste.

“It is not the life we – and he – wanted to imagine for him,” Bérubé writes.

But it’s common.

You’ll recall that disabled workers are the only group that has no wage floor: they don’t have to be paid minimum wage. A person doing manual work in a sheltered workshop might make $1.45 an hour, or they might make a lot less. Meanwhile, as Curtis Decker, executive director for the National Disability Rights Network, notes in this story, workshop executives, who are paid from $250,000 to $400,000 a year, vehemently resist raising worker pay to one-third that of minimum wage.

Private horror stories include the rendering plant in Iowa that paid men with intellectual disabilities $65 a month to get up at 3 a.m. every day and gut turkeys, some for over 30 years.

When Bérubé’s story popped up on my Twitter this morning, it held a certain poignancy and ache for me.

I’d just received information about a day program that my son could attend when he leaves school in a year at age 21. It’s a program that would cost about $1,000 a month (is that the equivalent of what parents pay for daycare of small children?)

There’s nothing inherently wrong with the program.

But I can't help thinking of all of the young adults who will go there, students like Jamie, who grew up with their own unique visions of what one day they’d “be.” And how for all of these youth, the day program or the sheltered workshop or sitting at home watching TV, whatever the endpoint, will be a complete disconnect from what they imagined.

My son’s dream was to be a zookeeper. He’s always had a special fondness for unusual creatures like the tapir, which looks like a dense pig with a trunk. He recently created his own sign to depict the unusually long snout the tapir uses to pluck fruit from trees. If it wasn't for my son, I never would have known that the tapir is born with spots or stripes that later fade; has been on the earth for millions of years; and is part of the family of horses, rhinoceroses and zebras.

We haven't brought up the field of zookeeping recently. I'm not sure how I would explain that my son's passions will have nothing to do with his future work. It seems cruel.

Yesterday I read about “the self-enhancement bias,” our evolutionary tendency to inflate our abilities, so that each one of us presumes we are so much more capable and talented than the average person: “Your wildly inaccurate self-evaluations get you through rough times and help motivate you when times are good,” says David McRaney, author of You Are Now Less Dumb. “Research shows that people who are brutally honest with themselves are not as happy day to day as people with unrealistic assumptions about their abilities.”

It made me think of Jamie, and how he'd been forced to progressively dismantle his dream of working with sea animals, how youth with disabilities aren't allowed to have the “delusions of grandeur” that the self-enhancement research suggests is wired into us to keep us hopeful, emotionally afloat and moving forward.

How had Jamie's passion to study or care for other-worldly and diverse sea life been transformed into the more “realistic” counting and packaging of meaningless vials?

Despite parents who were creative and bold and resourceful, it was the only option left to him.

Yesterday, this piece about how companies keen on designing diversity programs overlook people with disabilities struck me as sad and darkly humorous. According to a British consultant who helps companies recruit and train staff with disabilities, HR folks often dismiss her, saying: “Oh, we're not doing disability, we're doing women… and black people at the moment.”

This morning, Canadian researchers announced in the American Journal of Human Genetics that they had “solved” 146 rare disorders, including identifying 67 new genes that haven’t been associated with rare diseases before. “When we launched this project, we predicted we might explain, or solve, 50 disorders; we’ve almost tripled that goal,” said Dr. Kym Boycott, lead investigator and clinician scientist at the Children’s Hospital of Eastern Ontario.

It sounds exciting, doesn’t it? But the word “solve” is misleading. Identifying the underlying genetic basis of these rare disorders doesn't “solve” the disorders for anyone living with them. And the truth is that for most of these conditions there never will be treatments: there isn't money in developing therapies for conditions where a tiny population benefits (please see The politics of funding).

I learned this 18 years ago when I started an international association for families of children with my son’s rare genetic condition. At the time, the two genes that are deleted in this syndrome had been identified. I remember how excited I was to interview the scientists and write stories in our newsletter. In fact, there was even mainstream research interest in one of the genes because it’s a tumor-suppressor; understanding it was thought to be a window into understanding certain types of cancer.

Eighteen years later there are no tailored genetic treatments for this syndrome. And there never will be.

The Canadian researchers say a benefit of their gene discoveries is to “offer informed reproductive counselling.” I guess that means that at some point we’ll be able to diagnose these conditions prenatally and women can choose whether to abort or not.

But other than the “gee-whiz, isn’t that cool that we know which genes are responsible for this disorder?” these findings will do nothing practical and meaningful for the children and families affected. Eighteen years ago the news would have sparked false hope in me. Now I know better.

Instead of throwing money at studies looking at the genetic basis of rare conditions—research that will never translate into workable therapies—I’d like to see money invested in improving the lives of kids and adults who are here now, people like Jamie, who once dreamed of being a marine biologist.

To me, finding a way to prevent the passions of people like Jamie from being crushed is a more urgent and noble research goal. I bet you it's also more challenging and less glamorous.