This parent's essay didn't sit right with me

Photo by Elinor Carucci in The Cut

By Louise Kinross

On Sunday, I clicked on this piece in New York Magazine: Every Parent Wants to Protect Their Child. I Never Got the Chance.

There’s this adorable image of a toddler who appears healthy, but who, we learn, has cystic fibrosis (CF). CF is a progressive genetic disease that causes damage to the lungs and digestive system. It shortens life, although some people with the condition are living into their '40s and '50s.

His mother, Jen Gann, says she chose to have prenatal genetic testing while pregnant because “if something were wrong,” she would abort.

Due to human error, Gann never received the results, which showed she was a carrier for the CF genetic mutation. That meant her husband wasn’t advised to get tested. He also is a carrier. They found out their son Dudley has cystic fibrosis when he was a few weeks’ old.

The rest of the piece is about the intense guilt Gann experiences and her decision to sue her health providers in a case of wrongful birth.

I feel empathy for Gann. Every mother hopes she will be lucky enough to give her newborn child a clean slate at life.

Perhaps where we differ is that I don't view my child's health as an entitlement guaranteed through science. I have a son with a rare genetic condition. After he was born, I stopped counting the number of doctors who said: “But he had a normal amnio!”

Gann's piece is problematic for me in a couple of ways.

At one point she envisions telling her older son: “I’m sorry I didn’t save you, from your own life.”

Oddly, we don’t hear from any adults with cystic fibrosis in Gann’s piece, people who could speak firsthand to the complexities of their lives. Will Dudley grow to wish he were not alive? Does his opinion, when he’s able to render it, matter?

Instead, we read about a conversation Gann had with Dortha Jacobs. Jacobs established the legal concept of wrongful birth in 1975, when she sued her doctor for not diagnosing her rubella when she was pregnant with her daughter Lesli. As a result, Lesli was born with severe disabilities. 

This is where I felt an editor should have applied the brakes.

Lesli isn’t offered any agency in the piece. Gann says Lesli lives in supported housing, can’t see, hear, talk or walk, has intellectual disabilities and has had over 20 surgeries. “It’s a life sentence,” is how her mother Jacobs describes her parenting experience.

I empathize with the challenges experienced by Jacobs and her daughter, and the struggles Gann anticipates with her son. But nothing about disability, or illness in the case of CF, is ever black or white.

We aren't told about how Lesli communicates. Why do we not hear from this marginalized person, or from other people with disabilities?

Gann says if she’d gotten her test results, she could have chosen to get pregnant using IVF to ensure a healthy embryo. She then asks: “Would I still have made Dudley, this exact son, only without his disease?”

Well, uh, no. Her son Dudley was the son that she would have terminated, prior to trying again with IVF. Another child would have been another child.

And that’s the sticking point, isn’t it? When a child is born with a disability or chronic health condition, it’s part of their identity. It doesn’t sit, like an inert blob, separate from the human being. It’s a part of all of their experiences, good and bad, part of the way they see the world and interact with it.

Jacobs says she’d like to replace the term “wrongful birth” with something like “parental choice.”

What about choice in how we live our lives with our children, in the here and now?

Today I listened to Keith McArthur's podcast with Fabiana Bacchini, author of From Surviving to Thriving. McArthur, who writes The Instruction Manual, is dad to a son with a rare genetic condition. Bacchini struggled with infertility, then got pregnant with twins. One child died in utero, and the other was born severely premature, with many complications, and later diagnosed with cerebral palsy. 

This line from Bacchini stuck out: “You have to be making a choice everyday, a conscious choice, that this is a good journey, despite the hardness and sadness and the unknown.”

That's the one choice we all have.

Read More

The up and down reactions to one dad's parenting world

By Ron Bishop

Our son Neil is 14. He was diagnosed at a week old with cystic fibrosis. When he couldn’t hold up his head or sit at age one he was diagnosed with cerebral palsy and developmental delays. He didn’t walk on his own till he was 11—that was an amazing day.

It’s fair to say that Neil’s three favourite places are: a swimming pool, where he can engage in Olympic-calibre, slap-splashing; a set of stairs—any set of stairs, any size, any height, carpeted or not, anywhere, including those in buildings at Drexel University in Philadelphia, where I’m on the faculty—and the escalators at a local bookstore.

From the start of Neil’s fascination with the bookstore escalators, the staff has been kind and accommodating. My wife Sheila and I know many by name. Some days it’s almost like a scene from the classic television show Cheers, when Norm Petersen trundled in to the fictional Boston bar to enthusiastic shouts of “Norm!” Other kids have been castigated for their rambunctious escalator behaviour, but Neil rolls merrily on, up and down, laughing.

Once, when one of the escalators was shut down for repairs, a genuine look of sadness crossed the face of Tom, who like many of his colleagues has come to know what these visits mean to Neil. We improvised, of course; the malfunctioning escalator became a set of stairs. We cruised up and stepped down.

But while the store’s employees have been kind—so much so that Sheila and I sent a letter thanking them to the corporate office—it’s the range of public reactions to Neil, and his intellectual disability, that coalesced into the leaping-off point for my next book.

With apologies to the very talented people who created the hit movie Inside Out, when we go out with Neil the looks we get typically reflect:

Disgust, as if the person is thinking—but will never muster the guts to say—“how could these people bring him here?” Some sneer visibly at Neil. Some change direction to avoid any contact with him. Some act as though they might catch his challenges. Others grumble when he cuts, with no malicious intent, in front of them to get on the escalator.

Indifference is the look we most frequently experience, as if Neil isn’t even there. Maybe intentional indifference is more accurate; these folks see him, they just don’t “see” him. To be fair, it may be that they’re wrapped up in what’s taking place in their own lives—getting a book for school, for example, or trying to quiet a grouchy child.

Curiosity It’s as though they’ve come upon an animal seen only in the wild or are gawking at a museum exhibit. Kids most often display this look, although to be fair, it probably originates in a lack of exposure to folks like Neil. It’s actually a mix of wonder and…

Fear—Neil doesn’t notice it, thankfully. But Sheila and I have been brought to tears more than once by kids who cringe when they see him, as though they’ve seen a monster, and duck behind a nearby parent.

Happiness It’s heartwarming when folks express gratitude to Neil for purportedly keeping the escalator moving. “Are you helping us get to the top?” they’ll ask. “Thanks a lot buddy,” we hear now and then. Others just smile at him: some out of a sense of obligation, others to check off “was nice to a disabled person,” and still others just because they recognize that he’s a very compelling individual.

A couple of weeks before Christmas last year, a middle-aged couple who watched Neil for about an hour from a table in the café stopped us between descent and ascent and handed us a $25 gift card. They told us he was a beautiful young man—quite true—and asked that we use the card to buy him a present.

Finally, we have Emulation. Neil has inspired a small but dedicated legion of imitators, kids who watch the escalator, grasp and pretend to propel the handrails, and now and then follow us on our forays.

During a visit this past October, two young girls, probably 12 or 13, hitched about a 10-minute ride one step behind us. Others dip into the escalator shenanigans songbook, sitting on the steps, running up and down, and attempting the time-honoured “go down the up” and its just-as-exciting cousin, “go up the down.” Sheila and I cringe with fear and a little embarrassment when a kid gets in trouble with a parent or a staff member for wanting to hang out and ride.

I’d guess that for all of these folks—the nasty, the encouraging, even the kind—Neil’s presence at the foot of the escalator is unusual and unexpected. We’ve learned that families like ours, with a child with an intellectual disability, are often reluctant to go out in public.

My new book will dissect how the news media portray people with intellectual disabilities—as hopeless victims or spunky competitors who sink a basket after sitting on the bench all season. Rarely do we see people with intellectual disabilities celebrated for who they are as individuals.

A huge part of the book will be stories from families with experiences like ours. I’ve put together an open-ended survey to collect stories from parents about how their child is treated by the general public and family, and how this influences their lives. If you’re the parent of a child with an intellectual disability, please consider filling out this anonymous survey. Thank you in advance for your help!

Ron Bishop is a professor in the Department of Communication at Drexel University in Philadelphia. To speak with him about his upcoming book Holding Up The Sky Together, e-mail Ron at rcbsam@comcast.net.

Read More