People With Disabilities

I knew I would write a book about my kid. Just not this book.
Rebecca Danielle Adam Prashaw was born April 22, 1993, in Sudbury, Ontario. Suzanne, her mom, spent only seventeen minutes in labour, and then, swoosh, Rebecca slid into life’s fast lane, never to put her foot on the brake.
As a record of her life and our relationship, I wrote my child a letter each year around her birthday. It took time to realize the letters might someday inspire a book. There was a story I wanted her to appreciate someday — hers, mine, ours.
I was a Catholic priest: a Roman Catholic priest who married when he was forty, becoming an instant stepdad to his wife’s three children, and a year later, a first-time dad to one child, that kid with the interesting name.
I worked as a journalist, too. I like to tell and write stories, and I recognized a story here. The letters, I thought, would bind my story to Rebecca’s story, so when the time was right, she would better understand the first chapters of her own journey. Or so I thought. That there was a book, too, was, well … more a dad’s hunch, a crazy intuition.
The working title for this book idea was Dear Rebecca: Love Letters from a Married Priest to His Daughter. I knew that it wouldn’t be on the Vatican’s blessed books list. That might work in my favour, I thought!
Those annual birthday letters chronicled the year’s events: celebrations, family trips to California and North Bay, camping, cottage visits, outdoor adventures, the pet dogs and rabbit, and a few mundane moments, too, that still somehow captured life’s wisdom. They also recount some madcap misadventures — I confess to a few missteps as a later-in-life dad on training wheels. Memo to Dad: venturing out in winter with your five-year-old onto the Castor River in Russell, Ontario, without first checking the ice is not a good idea; the unexpected polar bear dip to my waist qualifies as “top shelf” in the family legends.
The fifth-year birthday letter reports the epileptic seizures that first appeared out of nowhere at the breakfast table — dark, ominous clouds on an otherwise sunny horizon.
The eighth-year birthday letter tells of my own heartbreak over my separation from Suzanne, the breakup of a marriage that I did not want to end. Damn. Now there would be stories I’d prefer to omit from my book.
More dad letters follow in the next few years, charting Rebecca’s significant challenges in learning and at school, some clearly the consequences of the epilepsy. This would be the place where I would revisit a wickedly fun period of seven years when Rebecca played goalie for various girls’ hockey teams in Kanata, in the west end of Ottawa. Unknown to anyone at the time, what she learned in the goalie crease would tutor my kid for life’s adversities. Tales are emerging, too, of first jobs, hints of first loves, and more.
All in all, I recognized a story worth telling, a tale of a mischievous kid who was impossible to subdue or defeat, a kid wrapped in her parents’ and her family’s love; in hope, worry, and wonder.
But life, and my child, had other plans. Sickness, heartache, and unimaginable, enduring courage elbowed their way into the story. The book that I imagined writing is not the book I am writing. Adam emerged as the co-author.
Adam?
Our Rebecca.
Remember the girl born in 1993 with the boy’s name, Rebecca Danielle ADAM Prashaw? From very early on, Rebecca delighted in her boy’s name. She never tired of hearing the story her parents told of how Adam became part of her legal name. Adam, of course, wanted this story, this book, to be something that he would help to write.
Rebecca was the quintessential tomboy. There were early signs of Adam everywhere — the short hair, cut pageboy-style some years; the “dressed down” rough-and-tumble look. We saw it but didn’t see it. Rebecca was often thought to be a boy, as early on as age two. Rebecca’s mom recalls the tough negotiation she had with Rebecca to get her to wear a First Communion dress. She made a deal that Rebecca could take the dress off right after the pictures — like a flash, Rebecca was gone, and the dress disappeared for a day or two before her mother found it under her bed. Before she pulled the dress off, we snapped the First Communion photo, a nick on her face from the latest mishap and, of course, the short crop of hair.
As friends came into our lives and we were asked the inevitable “number of children” question, Suzanne would say, “I have two girls, a boy, and a wannabe.” In response to their inquisitive looks, she would add, “A girl who wants to be a boy.”
I recall an early, fun conversation with my daughter when I asked her if Dad could at least see his daughter in a dress three times in her life. Could we agree on that? That semi-serious negotiation resulted in Rebecca committing to wearing a dress on three occasions — her First Communion (which she did!), her wedding day, and, hell, I can’t even remember the third day she promised. It doesn’t matter. She reneged. And in the story this crazy kid would live, there actually was a wedding day. Well, sort of, but it was one minus the dress. That story will be told here, in this new book that Adam and I are writing.
Things are clearer in hindsight.
Unquestionably, from that day at Sudbury General Hospital in 1993, it was love at first sight. I was forty-one years old, a new dad, “over the moon” happy. I never saw or had a need to see “Daddy’s little girl” in Rebecca. Well, maybe a little, a nod to that “wearing a dress” negotiation! Indeed, I was punch-drunk ecstatic about being a dad of any child at all.
I guess the gender thing was there from the start. But it would take a lot of years, well into adolescence, for Adam to show up.
***
Adam made his official appearance in 2014, at twenty. His “coming out” was sandwiched between two major epilepsy surgeries in 2011 and 2015. We had called our kid Rebecca, or Becca, for short (and Bekkaa on Facebook), for almost twenty years, from birth through to 2014. I’ve sorted out my Adam/Rebecca story this way: the first happy, healthy childhood years, from birth to five (1993–1998); then the years during which the first series of smaller seizures occurred, from five to ten (1998–2003); then the more-or-less typical preteen and teen years, from ten to seventeen (2003–2011). The final part of the story takes place after the second series of bigger, more threatening seizures start in 2011. It is in the second, scarier epilepsy phase that Adam shows up, writing his own impressive new birth announcement. My co-author can’t wait to tell that story.
There are other stories to tell, too — visits to the Montreal Neurological Institute and Hospital (many call it the Neuro), getting her driver’s licence at sixteen, and a remarkable, life-changing conversation with her mother. Adam wants that in HIS book, too. “Her, she” is history. Adam will become my teacher on pronouns.
Somehow, bound and determined as he was to live a full, normal life, epilepsy and all, Adam, I sense, wanted to stay in the driver’s seat, even after he lost his licence because of his seizures. This is his life, his story. It was him behind the wheel, driving his parents crazy at times in a madcap, fast-lane race to adulthood and the independence he keenly craved. As he endured the epilepsy surgeries, as he chose to come out and come in to Adam, I marvelled at a new meaning of courage.
And through it all, in what was undoubtedly a hard life capped by one cruel catastrophe, he wove in a heap-load of fun. He did it with amazing friends, the steadfast support of family, and most of all abiding steadfastness, as Adam saw it all through to the end.
This is the story of Adam (Rebecca).
Dozens of Adam’s Facebook posts will help tell the story. I have not dared to change a single word. If it seems like Adam appears out of nowhere sometimes to jump into the conversation or start another conversation, well, that’s my son. If you wince at some of his posts, know that I winced first.
Soar, Adam, soar.

Prologue: Just the Beginning

I had prepared for this moment for weeks, months, years. In some ways, I had been preparing all my life. Yet somehow it hadn’t quite hit home that it was really going to happen—at first, probably because it was so far off, and then because it was just so colossal. But now it was here. I was at the New York Stock Exchange (NYSE), about to ring the opening bell before three hundred million observers. Back when I was a trader, that bell had marked my starting line each day. On this day, it would mark the start of trading of a new stock market index—one that I had created. The Return on Disability Index would be the world’s first to recognize disability as a driver of shareholder value. It would measure the performance of companies that provided products, services, and careers to people with disabilities. By ringing the bell, I was about to launch 1.3 billion people into the global economy. No pressure.

Even in that busy room, my thoughts went back to a night in the bar with my crew at Columbia Business School, when I first voiced my ideas. “You know, guys, I’m getting all these requests and calls from disability groups, and I did the math. This market looks big. Nobody’s really looking at it.” My friend Dustin looked at me and said, “You know, Rich, you’re a successful guy. You’ve done well, and there’s this big body of people out there who need leadership. Isn’t it kind of incumbent on you to step up? I mean, this is something that you can do. This is something that you’re uniquely qualified to do.”

Most people don’t get to see the client lobby of the NYSE. It’s a gorgeous room, full of artifacts: ancient ticker tapes, memorabilia, and screens playing videos featuring the operations of listed companies. Anyone who steps inside will quickly understand, if they didn’t already, that this is not just a place where billions of dollars are exchanged each day. It is a place with history and meaning.

The NYSE staff greeted our party that had been invited for the opening bell ceremonies and led us to a room where they gave us name badges and a medallion to mark the day. We were then ushered into a boardroom that seemed to come straight out of a movie set. An impossibly long table extended into the distance. At the end was a kind of altar where you could imagine the leaders of the Stock Exchange in, say, 1894, discussing the fates of companies and building the institution that today is the world’s biggest arbiter of capital.

We had a brief reception to celebrate the occasion. The NYSE set a strict cap on attendees, so we only invited our biggest supporters—those who had been instrumental in getting our concept off the ground and who embodied what we were trying to do. We had the head of the UN agency on disability. My Luu, the former global innovation, solutions, and policy director at IBM, was there. We had representatives from Pepsi; Mark Wafer, a disability champion formerly at Tim Hortons; and many others.

Our partners at Barclays asked me to give a speech. This was bound to be interesting, because most of the people in the room—NYSE officials, Barclays colleagues, other business people—had never heard me speak before. I think the Barclays team especially expected a rah-rah speech on building community—the typical charitable approach. At that point, ours was a boardroom relationship. They didn’t know my speaking style and had no clue what I was going to say.

I was genuinely overwhelmed by my surroundings and the idea of launching this new financial instrument that would recognize people with disabilities as a market. I ended up giving probably the hardest-core business speech of my life. I don’t generally write speeches—I speak from the head and the hip. Toward the end, I remember saying, “This is not the end of the journey, this is just the beginning. This is where we focus on the economic potential of 1.3 billion people in the world who have disabilities. We put the power of financial capital behind these lives of phenomenal potential. That’s what this institution was created to do, and now we’re going to do it with disability.” I ended the speech with a call to action: “We’ve got some work to do, folks. Let’s get to work.” I don’t usually speak that way—I generally default to facts and the logic that flows from those facts. But in that moment, something compelled me to make that call to action. In the moment, it dawned on me that we were about to trade disability as a market for the first time. I owed it to the thousands of people with disabilities whom I had met to unleash my own passion. I owned my own identity as a person with a disability.

It was time to head to the trading floor. As is typical for me when I’m in an older building, I took the back way, the way the public never gets to see—which I kind of enjoy. I walked past offices and conference rooms and closed doors, and I could imagine some of the world’s great inventors walking through those halls. Once again, it dawned on me that we were breaking new ground by leveraging a centuries-old institution in a new way. I smiled and thought, Okay, let’s go.

To reach the podium on the balcony, we had to go up a flight of stairs. Some folks were obviously concerned about me getting up those stairs. Cerebral palsy (CP) gives my walk a distinct wobble, so if you don’t know me, you might think that climbing stairs was a problem. The NYSE had assigned me a security detail of three big guys. If I had had a wheelchair, they probably would have carried it. The attention was wholly unwarranted, but I found it grounded in genuine concern. Working with me requires people to think differently, and many certainly were.

I waved the big guys off and walked up the stairs just fine. When we got to the landing, I sat down and got my briefing: “This is what’s going to happen. In ten minutes we’re all going to go up on the podium, and at 9:29:50 you’re going to ring the bell. You press the button and hold it for exactly ten seconds. Then . . .”

“Wait a second,” I interrupted. “There’s a button?” At that point, my mind felt like it was about to explode. I had spent the early part of my career working on automating equity trading at Merrill Lynch, and I assumed that the opening bell rang thanks to an algorithm automatically linked to a clock. Nope.

“Are you sure you want the guy with CP ringing the bell?” I asked jokingly. Part of my disability functionally impacts my fine motor control. In other words, I shake a bit. Great, I was thinking, I’m going to be the guy who double-rings the Bell. Given the respect I have for the institution of the New York Stock Exchange, I didn’t exactly relish that prospect.

One of my Barclays colleagues said, in a stage whisper, “Isn’t that kind of the point of what we’re doing?”

Yes, we were putting people with disabilities in control. What blew me away, however, was that in this day and age, at the New York Stock Exchange of all places, where everything today is about computers, where financial modeling software conducts trades automatically and petabytes of data fly along fiber-optic superhighways every nanosecond of every day, you needed to put your finger on a button to ring a bell announcing that trading was open for the day. The enormity of the moment came down to the simple pushing of a button. It was perfect.

When our group moved up to the podium, we had an amazing view. There it was, spread out before us: the trading floor of the New York Stock Exchange. I looked out over the packed room, a room I had first gaped at, bug-eyed, as an undergrad from Canada’s York University. A room that I’d surveyed with calculating eyes as an MBA candidate at Columbia Business School. And a room through which I had put billions of dollars during my time as a trader at Merrill Lynch. To say I was nervous would be a colossal understatement. For the next nine minutes and fifty seconds, I was utterly focused on that button. It was all I could think of until 9:29:50 finally came around, and I placed my left index finger on that button and pressed down using every newton of force that I could muster. The bell rang. It was loud. I had every muscle in my body trained on that fingertip. You could have come at me with the entire defensive line of the New York Jets and I wouldn’t have budged. After precisely ten seconds, I released.

For me, the game shifted at that point. Up until that moment, the lives of people with disabilities did not include one of the primary inputs of everybody else’s lives, which is financial capital. Now we had a platform to build from. A lot of people would look at me ringing that bell and see it as a crowning achievement, but I looked at it as a beginning, as a way to start something new. I looked at all of the things that needed to happen from that moment forward to bring this market into alignment with every other market of its size. It was mind-boggling. Change is not simple. You can’t brush it across the canvas like paint to make it magically appear. You can’t give a speech to a billion people and expect change to occur. It’s cumulative. First people make slight changes in what they do in their daily lives, both within institutions and in their interactions with those institutions. Multiply that by the number of institutions that we have, whether companies, brands, or governments, and it quickly adds up to billions and billions of new actions. To me that’s both very daunting and incredibly exciting.

Until we change the way we think and act with disability in every way, we are wasting the potential and futures of hundreds of millions of people. That’s why I must ask that as you go ahead and read this book, you, also, change the way you think about disability. So don’t expect that I’m going to offer you stories about my struggles to overcome limitations to do the everyday things that other people take for granted. A, boring. B, I learned from a pretty early age that if you want to have success as a person with disabilities, you focus on knocking the ball out of the park every chance you get. Because guess what? We will be judged on our results whether we have a disability or not. So as you read my story, please don’t handicap my performance, if you’ll excuse the expression, by feeling sorry for me. And please don’t come to me looking for inspiration. This book is intended to be 100 percent free of inspiration porn. I’m a business guy with a market-based vision for a new way to build economic value by attracting and delighting people via the process of thinking differently. It happens to have been informed by my personal experience of CP and my observations of people with disabilities acting in consumer and labor markets. I’ve written this book to share what it takes to make this vision come true—a vision that will “unleash different.” I invite you to join me on the journey.