Wake Up, Smarten Up, Rise Up | How a Genetic Disability Inspired a Life of Service

Living with a genetic disability inspires a lifetime of service — and overcoming biases

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On a flight to Los Angeles, I cannot concentrate on the important UNICEF speech on the global refugee crisis that I should be writing to be presented at the Annenberg Space for Photography. It’s a really big deal.

But my mind is racing and my heart hurts after being totally stunned by the actions of two airport TSA (Transportation Security Administration) agents who insisted on giving me a security screening known as a pat down in a private room. This is usually done in a wheelchair out in the open.

This time, however, as I struggled to stand, they posed a question that I wondered was even legal to ask: “Were you born like this?”

Obviously they were referring to my weakened body and the fact that I needed to lean on the wall, as well as my walker, in order to stand. While I invite inquiries about my condition to raise awareness about disabilities and break down stigma, their tone was not one that made me feel empowered in that moment.

I quietly explained that while I was born with a genetic defect, HIBM (Hereditary Inclusion Body Myopathies), a rare type of Muscular Dystrophy, the ‘impairment’ did not manifest itself until adulthood and that I was only diagnosed at age 30.

Their response, which probably came from their version of empathy, was instead just a worse kick in the gut: “Well that’s just awful. You sure are lucky your husband married you this way. What a blessing he is.” As they proceeded with the pat down, I was just dazed. My outspoken self had no idea how to respond, partly because I was confused about how I was feeling and shocked they could be so rude.

My husband John was waiting patiently, already annoyed with them for taking me in, so it did not help when they both praised him to high heaven for marrying me. “We heard your story,” they said to him. “You really are a blessing to her.” My husband could see the discomfort in my eyes, and my desire to simply get out of there, so he did not entertain their comments with a response about himself, rather with a sweet word about me, as he always does.

Later, sitting on the plane, the struggle inside me to make sense of what had just happened began to infuriate me. I lamented that I did not have my thoughts in place earlier to respond to the TSA agents with the following:

1. I am not any less of a woman, wife, companion or partner because I live with a disability.
2. I am not a victim because I live with a progressive muscle-wasting disease.
3. Yes, I am vulnerable and because of it, more courageous.
4. Yes, I have different abilities, which makes me absolutely unique.
5. Yes, I sometimes need help, but that means more moments to cuddle close together and reasons to say ‘thank you’.
6. My husband does not love me DESPITE my disability. On the contrary, he loves me because of how I face this daily struggle with dignity.
7. Yes, my husband is a blessing, but not because he ‘married me like this anyway’.

Are expectations of humanity so low that someone who marries a man or a woman with an impairment is automatically regarded as a saint? Are standards for being ‘marriage material’ that vapid and vain? Why does society still think so little of what people with disabilities have to offer to a marriage, a job or society?

If you, or anyone you know, has any of these small-minded, ignorant and archaic ideas, please do me a favor…

Wake Up!

Recognize all the valuable contributions that people of all abilities make every day to their relationships, families and communities.

Smarten Up!

Educate yourself on the issues facing people with disabilities to help shatter stigma and discrimination.

Rise Up!

Support people and causes advocating for inclusion and equality. Walk the talk, whether it be a sexy strut or wobble like mine.

If my unapologetic outspokenness has made you uncomfortable, be reminded that I take great pride and pleasure in being a part of human diversity, as a woman living with a disability. By no means does this bold stance come from natural born self-confidence, but rather an intuitive drive within me to serve others less fortunate than myself.

I have known from a young age that no matter what was going on with me, there was someone worse off than I was.

In helping them, I found a coping mechanism for all of my childhood traumas. This all sounds quite sophisticated for a child, but it truly is how I made it through some very difficult years.

My childhood was complicated and scary — not exactly one of the fairytales. I did not know many of the simple childhood joys of careless play, a safe haven home or childlike innocence. Our home life was one big secret that very few people ever knew about. Alcoholism and abuse, an evil that had followed my mother from her own broken past, possessed her from the time she divorced my loving father when I was just 4 years old.

The Chaos

Heartbreak was well known to me from a young age. I yearned to live with my father, holding my stuffed animals tightly during bedtime prayers, “If there is a God, please help us escape to daddy.” That wish would not come true for 11 years, until I was 15 years old.

I can count on one hand the happy memories with my mother. There must have been more — at least I hope there were — but they have been drowned out by the nightmare that was the day-to-day managing of her intoxication, violent moods and absence, sometimes days for on end.

Nevertheless I loved her, despite the neglect, the violence and the abuse. Sadly, her love for her children, my little brother and I, could not overpower the demons she fought. I understand now that her sadness and despair must have been as deep as mine, because soon after we moved away, after a decade of losing herself in a bottle every day — 40 ounces of Vodka to be exact — she took her own life. I was just a teenager and heartbroken again.

The Vision

When I was 6-years-old we were watching a telethon raising money for starving children somewhere in Africa. As much as a little one can be bewildered, I was… unable to accept the injustice of a child going hungry.

“But why not?” I boldly questioned when denied the option of sending some of our left over dinner to Africa. Sharing what we had made perfect sense to me. But instead of leftovers, I sent sponsorship money — coins I collected that very same night from my neighbors after I carried a shoebox around our apartment complex going door to door. My efforts resulted in something like $12.00, an absolute fortune in my mind, enough as the telethon promised, to save the life of a suffering child.

I figured out that night, determined with all my 6-year old might, what I had to do: help suffering children in need.

I proudly announced my plan to everyone. Mrs. Looman, my first grade teacher, called my mother to make sure I was ok after a passionate plea to my classmates to follow suit on this humanitarian quest (remember, we were only 6). Luckily, my schools eventually presented opportunities to dive into issues of social justice.

When I was 12 years old, my Social Studies class taught us about global affairs and the United Nations. Finally, it became crystal clear. I now had a concrete goal to channel my passion: When I grew up, I would work for the United Nations! You can check my school yearbook bios or ask my friends what I was going to do when I grew up and they will tell you the same. I knew it, I declared it, and I made it a reality. Who knew that early coin drive would lead to a professional career fundraising for the United Nations Children’s Fund (UNICEF) to support the world’s most vulnerable and marginalized children?

The Journey

So my journey began to prepare myself to be a competitive candidate to join the United Nations humanitarian agencies in order to save children’s lives. I reveled in my studies, especially world affairs, history and French class (because you need to be fluent in at least two UN languages).

Any social justice volunteer campaign that our school hosted, I joined: canvassing for the Canadian Cancer Society, climbing the stairs at Toronto’s CN Tower (twice) to raise money for the World Wildlife Fund or sleeping in the school library without food for a 24-Hour Famine to do my part for World Vision. I competed in every student UN speech and writing competition I could find.

Soon after my mother died, I represented Canada at the 1995 World Summit of Children. With 137 other youth delegates from around the world, I met the UN Secretary General Boutros Boutros-Gahli and shamelessly told the Canadian Ambassador to the UN that his mind was clouded with politics and economics. He was clearly unable to see what needed to be done to save the world’s children.

Oh yes, I said all that as I handed over our delegation’s suggested amendments to Agenda 21 on the Rights of the Child, a cheeky move that did get me scolded. But I did not care.

I was feisty, outspoken, determined, empowered and passionate, with a fire that has yet to die out.

In college I pursued a degree in International Development, studied a third language (Spanish) and spent a calendar year in a developing country, ensuring that I had the guts and stamina to live abroad.

Upon graduating, the first internship I applied to (of more than 50, but really the only one I wanted) was with the United Nations Association of Canada, a steep competition of more than 7,000 candidates for 11 spots around the world. Somehow my plan worked. In 2001, I joined the World Food Programme, the food aid agency of the UN, in Ecuador and thus materialized my childhood calling. For the past 15 years, living in 10 different countries — mostly with UNICEF — I have indeed experienced a young person’s dream taking flight.

Interestingly, it is not my career that defines my essence. I also recognize how the globetrotting might be have been a crutch or escape from my past, a coping mechanism to deal with my own internal struggle of parental abandonment and suicide grief. In reality, it was the epic adventure of living with HIBM, a maze for which there is no handbook or Guide for Dummies, that has guided me to my best self.

Navigating this tumultuous new reality that has stripped away layers of defense mechanisms, pretenses, Band Aids and false certainties, has left me emerged in a naked vulnerability, blissfully immersed in courage, loving self-confidence, genuine self-identity, humility and a newfound and more profound purpose: as a global advocate for people with disabilities worldwide.

Being of service has been my saving grace.

This belief system is one that not only gifts a sense of purpose, but has healed the wounds of my past, while empowering me with super powers to face the obstacles of my precarious future.

Always maintaining a perspective of where I am in relation to others — better off or worse — has led me to go beyond what most people consider normal. I am so obstinate that I know my weakening body was given to me (rather than my brother who had a 50% chance of having the same genetic condition), because I sincerely believe HIBM is a blessing rather than a curse. Living with a disability and progressive disease, I can truly serve others in even more profound and meaningful ways than what my childhood heart dared to dream.

And marrying my gorgeous husband? That absolutely is another divine element on my path. Our marriage nourishes a part of my heart that was just waiting to flourish. Our love brings out an even more raw reflection of myself and helps me shine on a unique plateau of mutual respect and encouragement where there are no limitations, only exciting possibilities.

Ready For My Close Up

Today, I strive to break down the stigma and discrimination towards people with disabilities. Whether giving a speech to fundraise for UNICEF or taking on great physical and psychological feats like crossing the Grand Canyon in a one-of-a-kind expedition — and creating a correlating documentary, Her Inescapable Brave Mission — I work to redefine my own relationship to HIBM while shifting the perception for others.

Leg braces, walkers and all… I’m still that young girl who toted a shoebox around to collect funds… the one who believed in possibility — and overcoming adversity.

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