Disability is part of my ‘normal’ life

When I told my mother that I was writing for BLOOM, she said it was ironic given her memory that we were kicked out of Bloorview rehab after my rhizotomy surgery in 1994 for being “difficult.” I was a strong-willed child and she was opinionated and independent. But she was also quick to remind me that those so-called difficulties led to immediate and visible improvements after she made suggestions during a parent support group while we were there. “It was confusing and disorienting being in a new place,” she told me. “Some parents didn’t speak English. I figured that if I struggled then they must have even worse.” So those who appreciate being greeted by a smiling staff member to explain the ins and outs as they enter rehab at Holland Bloorview with their child have Susan Geboers, and other parents, no doubt, to thank.

My mother was the one who taught me I could do, maybe not everything (because no one can go everything), but a lot that others could. I don’t remember there ever being a question of whether or not I would go to college or university—in fact, I graduated from Durham College in 2011 and will graduate from Ryerson University on June 8—live away from home or have a career, date and one day get married. It was just assumed. I only recently learned that my parents were quietly worried this entire time, as pointed out by my father’s psychic (because my parents believe in that kind of thing). But I’ve been assured that it’s normal for parents to worry about their children’s future, regardless of their physical or mental ability.

I was born on January 23, 1990. Nine weeks early, I was about one pound and small enough to fit in the palm of my 19-year-old mother’s hand. It was two months and four more pounds before I was allowed to leave Sick Kids Hospital. Aside from my small size and wonky eyes, caused by an over exposure to oxygen at birth, I seemed like any other baby. It wasn’t until I was meant to start rolling over and sitting up on my own that my mom began to realize that I wasn’t reaching the normal development milestones. After multiple doctors and tests, at two years old I was diagnosed with cerebral palsy spastic diplegia. My mom says that when the doctor called to give her the news, she was so relieved just to have an answer that she said “Okay, thank you,” then hung up. It wasn’t until she began to think about it a few minutes later that she realized she had no idea what cerebral palsy was. So she called the doctor back. Unsure of what exactly my future would hold and not wanting to give my mother false hope, the doctor told her I would likely never walk. This is where, I believe, the problem begins.

In the 23 years since that cryptic prognosis, I’ve not only learned to walk but also relearned to walk after my rhizotomy and again after my leg surgery in 1999 (although my boyfriend’s mother doesn’t consider walking with canes to be walking). It took a lot of hard work by both my mother and I, but I seemed to have fared a lot better in life than the doctors predicted. I don’t blame them, as there are many forms of cerebral palsy and even the same form can differ further from person to person. For example, while my best friend, Hanako, and I both have spastic diplegia, she can walk on her own but I need at least one cane.

It hasn’t always been an easy life, full of the ups and downs of growing up. I’ve struggled with depression and trying to find my place in a world that I often feel I don’t quite fit into. I’ve felt like I’m stuck between the able and disabled worlds with a foot in each—too disabled to go unnoticed but not disabled enough to entirely relate to the disabled community. But despite all of this I’ve always considered my life to be quite unquestionably normal. This is why I find it odd, and a bit sad, when I meet people who are surprised to learn that I live away from home with a roommate, study journalism, spent a semester studying and traveling in New Zealand (during which I went skydiving and bungy jumping), love going to concerts and, not only have a boyfriend, but a boyfriend who is not disabled. This last point is particularly interesting given that I’ve never given much thought to dating someone with a disability. Not because I am a “disabled hater,” as Mom jokingly accuses me, but because most of the guys I come across in daily life are able-bodied. Once people move past their surprise, they often tell me what a great inspiration I am for being so accomplished. But while it is sometimes nice to hear I’m doing well, I hate the implied assumption that people with disabilities don’t do these things and that I am therefore special.

I recently saw a TedTalk by Tamara Taggart, whose son, Becket, has Down syndrome. She speaks about how the doctor apologized and consoled her when giving the news of her son’s condition, just five days after his birth. Tamara said that set the tone for all of the negative conversations with doctors thereafter about all of the things Becket would never do, such as walk, talk, go to school or fit in with his peers (to which the doctor actually said “yes, that is a legitimate fear, as people with Downs are often lonely.”) But she also speaks about another conversation she had with a very hopeful and empathetic oncologist a few years later when she was diagnosed with cancer. This doctor focused on all the positives and told her about how this experience would change her for the better. Tamara wishes that when telling her about Becket’s Down syndrome, the first doctor had offered the same hope and told her about how wonderful her little boy would grow up to be. Parents generally hear first about their child’s disability from a doctor. That’s why doctors should be more mindful of the negativity and stereotypes they are fostering.

It reminded me of how some friends of mine reacted when they were told their son had cerebral palsy—already worrying about how he would never have a job or get married. Don’t get me wrong, I understand fear of the unknown and mourning for the perfect life and child parents thought they would have. But age two is far too young to predict or write-off a child’s future. Having cerebral palsy doesn’t have to mean that the life a parent envisions for their child is impossible—it may just be accomplished in a slightly different way, or better than they could have ever imagined. Maybe he won’t play soccer, but maybe he will play sledge hockey, become a writer or go into the arts or sciences. Finding work is challenging to say the least but a good education, patience and connections are helpful—that’s how I came to be writing for BLOOM. Dating is not always easy (not that it is for anyone). My boyfriend’s parents are old-school European immigrants who dislike me simply because I have a disability. While that is a whole other story, what is important is that this is an extreme case that does not, and will not, happen to everyone.

Being aware of the science of your child’s condition and doing what needs to be done in order to improve their quality of life is important. But it’s also important to help them feel comfortable with themselves and their disability by calling attention to their positive qualities and potential to live a happy, productive and, possibly, somewhat ordinary life.

Originally published by BLOOM on April 2, 2015.

PODCAST: Allegations of Jian Ghomeshi & the role of journalists covering sexual assault

Originally published by the Ryerson Review of Journalism on November 26, 2014. 

We spoke with Celine Cooper from Montreal’s The Gazette, Scaachi Koul from Hazlitt, Robyn Urback from the National Post and Margaret Wente from The Globe and Mail about how the issues surrounding sexual assault, rape and abuse should be covered by journalists. (I conducted all the interviews that make up this podcast.)

Listen here: http://rrj.ca/podcast-allegations-of-jian-ghomeshi-the-role-of-journalists-covering-sexual-assault/ 

PODCAST: Conflict of Interest

Originally published by the Ryerson Review of Journalism on February 11, 2015.

In lieu of recent events around Leslie Roberts and Amanda Lang, we spoke with CAJ president Hugo Rodrigues, National Post journalist Tristin Hopper and PR specialist and co-founder of On Q Communications, Tanya Dodaro about conflict of interest and if and when journalism becomes PR.

Click here to listen: http://rrj.ca/podcast-conflict-of-interest/

Maybe CBC deserves more credit

When CBC first announced its intention and approach to investigating the Jian Ghomeshi scandal, it seemed to be more of a public relations stunt than anything else. To me, it seemed more to protect itself than those who have experienced harassment at the hands of the corporation’s superstar.

In fact, the investigation plan was so questionable that the CBC’s own union representative, the Canadian Media Guild, cautioned employees against speaking to lawyer and investigation leader, Janice Rubin. Why? It could cost them their jobs.

Despite it being voluntary, CBC offered informants no reward or security. Rubin would record all interviews but those being interviewed were not allowed to do the same. Interviewees were eventually extended the seemingly fair opportunity to review a transcript of their interview, but not make changes.

Although the investigation was about Ghomeshi, it seemed that anyone who volunteered information was also volunteering to be investigated. Not only does CBC have access to the recordings, but it has also told CMG they may be “relied on by management to discipline the employee being interviewed.”

Making the whole investigation seemingly pointless.

But it turns out that I, and everyone else who questioned CBC’s intentions, may have been wrong. On January 5, the network announced Chris Boyce, the executive director of CBC Radio, and Todd Spencer, its executive director of human resources and industrial relations, had been placed on leaves of absence.

The removal of Spencer is almost expected, as HR played an important role in enabling the harassments to go on by failing to stand up for the employees, but suspending of Boyce is the most reassuring He fumbled through his interview in November, where he said that it had not been his place to conduct a police investigation but believed they did what they thought was best at the time, but “in any case, hindsight is 20-20.” It is well known that Boyce had a lot invested in Ghomeshi, as he was “instrumental” in making him a star, and would be one of the least keen to see him fall from fame; therefore, he may have turned a blind eye.

There are still questions about whether or not these senior executives were sent home with pay, or what will come next. But at least it appears CBC deserves more credit than I initially gave.

Originally published by the Ryerson Review of Journalism on January 15, 2015

One of A Kind

Photo courtesy Laura Arsie
Photo courtesy Laura Arsie

Linda Lewis always had a clear idea of what she wanted. Caroline Connell, who worked with her at Today’s Parent, could see the gears of her mind turning as she listened to art concepts. She’d say, “Yeah, that’s great, but I think it should be like this,” before presenting little sketches she’d just drawn during the discussion. “What do you think?” Lewis would ask. The staff teased her about her terrible drawings, but they always knew that what she came up with was good. “She would sort of pretend to entertain everyone else’s ideas,” says Connell, “but she pretty much had it figured out herself.”

Later, when Lewis had a chance to create a Canadian edition of More, an American lifestyle magazine, she knew what she wanted it to reflect: the looks, lives and desires of women 40 and over. When it launched in 2007, she wrote in her Letter from Linda: “You’ve reached middle age when all you exercise is caution. I read this sentence every day because it is written on my bathroom wall.” She admitted that although she was the first (and likely the last) person to purchase such kitschy wallpaper, she didn’t believe a word of it. Then 46, Lewis embraced her age—even if it meant having a muffin top around her waist, losing her glasses on top of her head or accidentally wearing two mismatched boots to the office.

For Lewis, who died of leukemia in July 2013, being an editor came naturally. Thanks to her open and honest relationship with readers, her perseverance to get the best stories and a good sense of humour, she led a successful career—even as the Canadian magazine industry faltered.


Lewis and her identical twin, Leora Eisen, were both bookworms growing up, even turning reading into a competition. “She read Anna Karenina and War and Peace first,” says Eisen. “So I had to read them.” They both went into journalism, though Lewis chose magazines while her sister became a TV documentary director. After completing her master’s degree at Syracuse University in New York in the mid-1980s, Lewis wrote for several of Canada’s top magazines, including Saturday NightenRoute and Chatelaine. Although general interest publications had long been in trouble and no one was getting rich, there was still a lot of work for freelancers.

In 1993, Lewis joined Today’s Parent as managing editor. As a mother of two young children, she always had many story ideas, so former editor-in-chief Fran Fearnley, who wasn’t a parent, relied on Lewis’s judgment. It also didn’t hurt that she could write well. “She was an excellent writer, which isn’t always the case with every editor,” says Fearnley. “She had such a wonderful way of combining important commentary with a light touch and bringing in examples from her own life.”

When Lewis took over as editor in 1997, she wrote editorials about her own experiences as a mother. In “The Facade of Competence,” she discussed four then-recent events: First, “‘Mom’s a really good. . . uh. . . speller!’” she wrote. “When asked what they thought I was good at, this is the response my two bright and adoring children came up with. Yup. That’s it.” Second, when a dinner guest asked what her best dish was, Lewis just stared at him as she served cold leftovers made by the nanny. Third, after a friend said she rarely yelled at her kids, “Casey and Nikki are looking at her longingly; they probably want to trade mothers.” And fourth, after messing up carpool plans, Lewis admits: “I phoned Barb when I finally remembered at 11:21 a.m., and announced that I should be fired from my job at a parenting magazine.”

There was no danger of that. Today’s Parent flourished during Lewis’s nine years as editor-in-chief, which was all the more impressive given the upheaval in the industry at that time. A recession in the early ’90s hurt advertising sales, and then came the internet. It provided a platform for cheap, seemingly endless content tailored to specific demographics, unleashing new competitors like online magazines and blogs. Some print magazines failed while many struggled. But Todays Parent had its niche and knew how to serve it, says D.B. Scott, a Canadian magazine blogger, consultant and president of Impresa Communications Ltd. The online threat was hard to ignore, so Today’s Parent filled its website with articles from the print edition as well as blogs, videos, contests and sponsored content.

Lewis also launched For Kids’ Sake, a program celebrating people making a difference in children’s lives. Each year, from 2004 to 2011, it awarded up to $10,000 to recipients and their charities. Ildiko Marshall, former group publisher and vice-president of the Today’s Parent Group at Rogers Publishing says, “The magazine was incredibly successful—she was a fabulous leader for the editorial.”

By 2006, it was time for a new challenge. At 45, her children now teenagers, Lewis became founding editor-in-chief of More Canada and asked senior editor Sarah Moore from Today’s Parent to join her. The magazine ran articles such as “This is What 52 Looks Like” and “More Beautiful at 40 Than at 20?” as well as pieces on everything from acne, weight and exercise to cosmetic surgery, menopause and cancer. Features celebrated women who were doing what they loved, making a difference and starting over. For example, “Bear Essentials” was about a woman who guided tourists through the polar bear habitat of Churchill, Manitoba, and “Church and Fate” profiled an editor who became an Anglican deacon. “It’s a lot about being comfortable in our own skin. We’ve lived a few years, know what we want and that’s a lot of what the magazine is about,” Lewis said in a 2008 interview on CTV. “I think it’s about accepting who you are and what you are doing and recognizing that there’s still a lot of living left to do.”

One of her favourite interviews was with Michaëlle Jean, and she later wrote about how much she liked and respected the Governor General—though she thought it was unprofessional to admit—because Jean was just like other women. In fact, Jean was late to the photoshoot and interview because she’d squeezed in much-needed time with friends. The two women hit it off and continued to write each other. Just before Lewis died, she received Jean’s last note.

At More, Lewis wrote openly about her life, weight (she was often accused of being too skinny), relationships, divorce, being a single parent of two teens and the ups and downs of getting older. In September 2008, she discussed meeting her readers. At a corporate luncheon one woman told her, “When I read your editorials, I feel like I’m sitting on the couch right next to you, chatting over a glass of wine.” On the subway, a woman next to her said, “Excuse me, are you Linda Lewis from More? I’m 46 and I totally get it.”


When Lewis started at Todays Parent, the magazine operated out of an old three-storey brick building in downtown Toronto. Editors worked from home, but when they came into the office, they perched wherever there was room; it was a fun and engaging space. At the time, Lewis was a busy wife and mother, but she never tired of work. Connell says Lewis’s mind was always on the magazine. It was not uncommon for her to assign pieces “absurdly far in advance” and she always finished ahead of deadline. She was also an insomniac, according to Connell. “She used to come back with manuscripts that she’d written her notes on, and say, ‘Yeah, I did that one at four in the morning because I couldn’t sleep.’”

Lewis also pushed her editors and writers to do their best work. Vanessa Craft, who was a beauty editor at More, says Lewis was open-minded when her staff came to her with ideas, but she also challenged their reasoning to ensure their suggestions were appropriate for the magazine. “Linda always put the readers first and made you view your ideas, your stories and editorials through their eyes,” says Craft. She often received comments such as “jargony and press release-y” on her drafts. Dan Bortolotti, who wrote for Today’s Parent and More, sometimes grumbled as Lewis sent him away to re-interview and rewrite, but could never deny that her feedback made his work better. He valued her ability to improve stories while still maintaining the writer’s voice.

Lewis was just as demanding at home, where she would dock her son Casey’s allowance for grammar mistakes on his homework. She also showed no mercy as a Scrabble player. Tim Pennock, Lewis’s boyfriend during the last four years of her life, admits that he never expected to win a game and he considers the few times he managed to stump her to be victories.

But Lewis was forgetful. It was not unusual for her to come to the office wearing jeans inside-out. Faith Cochran, More’s art director, says Lewis wasn’t big on formal meetings, so she was more likely to run from office to office as thoughts came to her. If she didn’t, the idea might have left her mind as quickly as it arrived.

When Lewis was away on medical leave due to cervical cancer in 2000, her staff picked up the slack. Bortolotti had never worked so hard, but he and his colleagues wanted to make her proud. It was a test for those in the “School of Linda,” a test he feels they passed thanks to her training. “Everything we do now,” says Craft, currently beauty director of Elle Canada, “is filtered through the ‘What would Linda do?’ lens.”

Although Lewis was driven and demanding, she certainly had a fun side. In 2009, she and photographer Laura Arsie travelled to New Zealand’s North Island together. They laughed as they struggled to kayak down Mohaka River and ride bicycles around Hawke’s Bay—although some of their troubles may have stemmed from enjoying the wineries a little too much. Arsie photographed all of their adventures, including one at a mud spa where Lewis encouraged her friend to take her photo as she lay covered head-to-toe in mud.

While in Barbados on vacation in 2012, Lewis and Pennock discovered a small café. When the owner noticed them, he showed them a National Post article on the wall: “The Worthy 30,” about the most influential women in Toronto. “It was her picture in a little pub in Barbados,” says Pennock. “I go, ‘Oh my god, you gotta be kidding me.’ You’d think she’d brought me there to show me the picture.” But when the owner told them the list’s author, Shinan Govani, was a regular customer, they realized it might be on the wall to honour him, not her—much to the humble Lewis’s relief.

“I always picture her looking up to the sun smiling,” says close friend Callie Maister. “Not that I’ve ever seen her do that, but it’s how I picture her.” It was always important to Lewis to maintain a close group of friends outside of work—not that it was difficult. People were drawn to her energy, humour and intelligence. Lewis and Eisen were “a pair of extremely bright girls, but so focused if they were writing or reading or discussing something; you could scream ‘Fire!’ in the room and they wouldn’t hear you,” says Maister. “But when Linda focused on you, you had absolutely all of her attention.”


In November 2012, soon after being told she would have to take at least a year’s leave to treat acute myeloid leukemia, a representative from More’s parent company, TC Media, visited Lewis at home to inform her that, after a seven-year run, the December issue would be the last. There wasn’t enough advertising to sustain it. “Advertising support—that’s always what brings any magazine down,” says Moore. “It’s not circulation. People who adore it, buy it.”

Although More had a circulation of 120,000, it had launched right before the 2008 economic recession and was never able to generate the ad revenue it hoped for. TC Media was principally a printing company that, according to Scott, went into magazine publishing to keep its presses running. Eventually, the company ran out of patience. This wasn’t the first time: it closed Homemakers in 2011 (after downsizing it in 2003) and sold Canadian Home Workshop and Outdoor Canada in 2009.

Lewis had every intention of returning to More after beating cancer for the second time. “I was devastated,” Lewis told the Toronto Star. “But let’s prioritize here. I am mainly concerned for my staff.” Friend and CTV National News anchor Lisa LaFlamme remembers the sadness Lewis felt the day she emptied her desk in preparation for at least six months of chemotherapy: “She loved the magazine—the strength, what it gave to women,” LaFlamme says. “It spoke to women of an age on issues that you never talked about, that no other magazine talked about. She just hit them head on.”

In her December-January 2013 editorial, “Isn’t It Ironic?” she explained that she was a cervical cancer survivor and had been living with a blood disorder that developed into acute myeloid leukemia. Instead of wearing an evening gown and drinking cocktails during the holiday season, she would be wearing a hospital gown and ingesting three types of chemotherapy drugs. “She was a master at honesty and real-life raw truth,” says LaFlamme, “even during the worst parts of her life.”

She kept her readers, friends and family up to date with her running commentary under the Twitter handle
@LindaOnLeukemia, where she discussed “things that don’t suck.” Lewis used the platform to promote humorous or touching moments of her ordeal. “Got excited when Supertramp was playing. Then realized it was a Coke commercial. I am old,” read one tweet in May 2013. Another: “Some days are so, so tough. But not today. Today, my magnolia tree bloomed, my kids made me smile and I ate a massive Dufflet cupcake.”

Lewis rarely failed to see the upside of an unfortunate situation. In March 2010, Cochran, Lewis and six other friends travelled to Las Vegas expecting the warm, sunny weather they needed to shoot a summer fashion feature. Instead, a blizzard stole the sunshine and covered Red Rock Canyon in a chilly white blanket—not at all a summer scene. But they hunted down any spot of sun they could find and swept snow away from the shivering model. Cochran was stressed about getting the shots they needed, but Lewis —to her art director’s annoyance—was optimistic they’d get something they could use, even if it was only a funny editorial.

Later that day, the sun came out and melted the snow, so they went home with a summer shot—and a funny editorial called “What Happened in Vegas.”

That was classic Lewis: optimistic to the end.

Originally published in the Spring 2015 edition of the Ryerson Review of Journalism

The power of language: voices for the disabled community

My mother has always told me that I should do whatever possible to be a voice for the disabled community. At one of my lowest points on my journey to self-acceptance, she made me attend a leadership conference with the hope of building my confidence. While there, I reconnected with my childhood friend Chantelle Fogarty-Griswold. Chantelle would love to be a voice for people with disabilities, but the speech delay caused by her type of cerebral palsy (CP) makes this challenging. My CP doesn’t affect my voice, but I’ve never been one for public speaking. Instead, I decided I would write. In journalism school, professors advised us to write what we know. And throughout my time at Ryerson I’ve taken the opportunity to write multiple stories about what I know best: disability.

It’s difficult for stories about minorities, such as those focusing on people with disabilities, to be heard in the daily news cycle. When stories are published, these people are often depicted inaccurately. This becomes detrimental when you consider the power journalism has to inspire understanding and change. But recently, there’s been progress. Journalists at major Canadian newspapers such as The Globe and Mail and Toronto Star are becoming increasingly intrigued by disability-related stories and are being conscious of how they’re telling them.

Language is crucial for the disabled community. “The words cripple and crippled are offensive to the disabled and also too vague to be useful,” states the ninth and latest edition of The Globe and Mail Style Book. “If we must use a vague term, make it disabled.” As good as this is, it’s ironic because the guide also cautions against such generalizations such as “the disabled” or “the deaf.”

Toronto Star public editor, Kathy English, said in an email that the latest Star style guide, last researched and updated in 2010, encourages the idea that “a person is an individual first” and should not be reduced to just their disability. These ideals are good to know, but Sylvia Stead, public editor at the Globe, summed it up best in an email: “Ideally, word usage should be based on knowledge of the subject and also asking the person being interviewed how they would want to be described,” she wrote. “It’s important to stay current in terms of language usage, but also to listen to the individual.”

This is something that Tavia Grant aimed to do while working on a recent feature for the Globe’s Report on Business about the employability of those with disabilities. The piece was originally intended to be a short weekday feature after she attended the February 11 Rethinking Disability Conference hosted by the Ontario Disability Employment Network. “But I happen to have a great editor that thought, first of all, that it was a business story and gave it that prominence,” Grant says. Since she’s not a health or social issues reporter, she did her research and took her language cues from her sources. She admits it was a learning curve and although she still may have made a few mistakes, she was quite mindful of her work and tried to build awareness without perpetuating stereotypes.

Andrea Gordon, a Life reporter at the Star, often writes about developmental disabilities. She says that she sort of fell in to the beat over the years as one story about children’s mental health led to another. Since then, she has developed a passion for the bringing these stories to light. “I guess what I’m attempting to do is to provide a voice and present a perspective that maybe that isn’t often heard.” Gordon says the best way to accomplish this is to let the source’s voice drive the story. But she also tries to be mindful of language. “People get upset when they see too much use of the phrase ‘autistic child,’ ‘autistic person,’ versus a ‘person with autism;’ that kind of language people are really sensitive to,” she explains. “So you try to be respectful of that but, at the same time, there are only so many words, there are decks and headlines, and sometimes people take shortcuts and it’s out of my control.”

One of the challenges for journalists writing about a developmental disability—particularly with people who are nonverbal or unable to communicate with the written word—is the reliance on parents or caregivers. Though most parents know their child best “you still have to be sensitive to the fact that this is still one step removed,” says Gordon. That’s why it’s important to hear from those who can speak for themselves. “But there aren’t a lot of those people so maybe we need to look harder for them,” she continues.

Writer and activist Melissa Graham uses her blog Bitch on Wheels to make sure her voice is heard on matters affecting people with disabilities. On February 7, in reaction to the discussion of legalizing assisted suicide, she wrote, “Ableism, not assisted suicide, is what we need to work against.” Graham would like to see more people with disabilities writing stories. She often gets asked to speak about not just the experiences of her own disability, but disabilities in general. “I can’t speak for everyone and some journalists understand that better than others,” she says. “Some media outlets are more progressive than others, and it’s easier to get that message across.”

There are some journalists with disabilities who won’t report on disabilities because they don’t want to be branded as a one-beat reporter. While I respect this, I have no qualms about covering disability-related stories. In fact, I’ve began freelancing for Holland Bloorview’s BLOOM, a magazine for parents of disabled children. My goal is to use my knowledge and abilities to provide awareness and understanding of an often-overlooked and misunderstood community by writing what I know.

Originally published by the Ryerson Review of Journalism on April 16, 2015.