Sunday afternoon several million people around the world were riveted to a live YouTube video to watch extreme athlete, Felix Baumgartner, boldly leap from a capsule 37,000 metres above the earth. He later said that “The most exciting moment was when I was standing at the door above the world.” The footage from the head camera is extraordinary! Those of us who watched could not help but be impressed by Mr. Baumgartner’s extensive preparation and sheer sense of pluck!
As I reflected on it later in the day, it occurred to me how these dramatic acts of bravery on a grand scale can command the world’s attention, while we are surrounded by countless other acts of resilience and courage that go almost un-noticed.
The day before the space jump, I attended the Run for Rett in Richmond Hill, Ontario. It was a fundraiser for the Ontario Rett Syndrome Association. Rett Syndrome is a neuro-developmental disorder, found almost exclusively in females, that profoundly affects the ability to speak, to walk and to use the hands. I am particularly interested in Rett Syndrome because it affects my beautiful niece Abby (whom I have written about before).
Barring the discovery of a miracle cure, Abby and others with Rett Syndrome will never be able to leap from the dizzying heights of near-space, but every day they (and their caregivers) exhibit a kind of bravado and fortitude that I find to be even more impressive. You could sense it at the Run for Rett on Saturday as you saw these girls and women lined up to participate. With incredible gumption and tender assistance from her dad, her brother and grandpa, Abby was actually able to walk the 1 km route. Other girls were propelled through the 5 km route in wheelchairs by the very family members who help them to move forward every single day. Living with Rett Syndrome reveals what real courage is made from. These beautiful girls and women are forced to depend on others for almost all their activities of daily living. Though the close family members and caregivers do not seek sympathy for the challenges they face, it appears to me that it takes great strength and determination for a family affected by Rett Syndrome to get through an ordinary day.
Perhaps it’s no coincidence that the theme this month for the Global Health Lunch series at the Family Medicine Teaching Unit where I work is Disability. Last week Dr. Penny Parnes, former director of the International Centre for Disability and Rehabilitation at the University of Toronto, was our guest speaker. She reminded us that 15% of the world’s population lives with disability. It strikes me that those billion people in the world who live with some form of disability are the most remarkable heroes who should be honoured and celebrated for their bravado. I am always deeply moved by the families affected by Rett Syndrome who perform superhuman feats to care and advocate for their loved ones.
I am also particularly impressed when I hear of individuals who overcome their disability or persevere in spite of a disability to act on behalf of a completely unrelated issue. There was a great story last week in the Globe and Mail about a shy British Columbia postal worker who felt so strongly about the need to speak up about the Northern Gateway pipeline that he found a way to conquer a disabling speech impediment.
There is no question. We need all the heroes we can find to inspire and amaze us. I am happy to celebrate the feats of Felix Baumgartner. But let us not forget to look for the brave ones that surround us every day – particularly those who persevere in spite of disability to leap into the space that surrounds them.
In the case of the courageous girls and women with Rett Syndrome, I am reminded of the words of Laurel Thatcher Ulrich who noted that when it comes to heroes, very often “the voices we most want to hear are barely audible.”