Am I Disabled or Aren't I Disabled?

by Eugène on April 1, 2009 - 4:34pm

QUEST Vol. 16, No. 2

While I lay on a plinth, a Swiss doctor gestured that I should lift up my left leg. He bear-hugged my leg and resisted its elevation with his full body weight. He grunted as he fought my movement.

He wasn’t the only person prodding and inspecting me. A team of doctors, biokineticists and physiotherapists surrounded me. It was like the United Nations of medics. Besides the Swiss doctor, there was a lady from Israel, a young athletic Austrian and two Americans.

They were tallying up points of my strength on a clipboard. And things weren’t going too well — it was turning out that I was too strong!

It wasn’t suddenly apparent, but there was a growing unease and stillness in the room, and knowing glances were passed between the medical tribunal. I was about to be eliminated — not only from the “World Championships,” but also from a man-made categorization that determines who is “disabled” and who is not.

A difficult irony

I had trained hard for the equivalent of the World Paralympic Championships (called the Open European Paralympic Championships), held under the auspices of the International Paralympic Committee (IPC). My training buildup had been intense. At night I would sweat on my stationary bike as I cycled more than two hours. On weekends and early mornings, I was on the cycle track practicing starts, sprints and keeping my top-end speed at over 26 miles per hour on the cliff-like embankment.

My proudest moment was at the airport just before the team flew to Holland, when I received my team kit with our national emblem, the Springbok, emblazoned on my tracksuit. I had achieved the ultimate — to represent South Africa at an international sporting event.

A day before my classification exam with all the examiners, I was starting to feel part of the disabled community. The opening ceremony had over 30 countries participating. We walked on to the famous Alkmaar cheese market with our country’s flags waving in front of hundreds of onlookers. I was finally making peace with my body. I displayed my imperfections proudly — along with the other athletes. I felt a sense of belonging. My body was OK. I didn’t need to conceal my imperfections.


The Swiss doctor placed my leg down alongside the other. His perspiration matched my own. The medical team finished their examination by informing me that I do not fit into any particular locomotor category. I had too much muscle to fall into a category to take part in the championships. Luckily for me, in the spirit of the competition, I was allowed to compete even though I didn’t fall into the classifications defined by the IPC, the international cycling body.

But this irony did not sit well with me. You see, muscle is actually my biggest problem. It is in a constant state of atrophy. I get weaker by the day. It is a slow weakening. I have facioscapulohumeral muscular dystrophy (FSHD), or in cycling jargon, a slow puncture.

This hereditary condition can vary by degrees. Dale, my older brother, can walk only with the help of orthotics. My situation is that I can still walk, albeit with a slight drop foot. Push-ups are out of the question, along with sit-ups. I use trick movements to get myself out of bed in the morning. But to the untrained eye I look almost perfectly normal.

With a jacket, loose-fitting shirt and trousers, you don’t see my winged scapulae, hunched shoulders or atrophied stomach and chest muscles. Casual onlookers also don’t notice that I kick the lip of raised tiles, or feel unsteady on uneven surfaces.

Nevertheless, the damage had been done by the Paralympic organization. I had been excommunicated. My fears of where I fit in society had been amplified onto a world stage — am I or aren’t I disabled? Which family do I belong to? It was like I was banished from the disabled family,yet I didn’t neatly fit in with the able-bodied folk. I was alone in the middle somewhere — in limbo.

I can’t lay the blame of this schizophrenic toggling purely on the medical examiners. With cock-crowing regularity I position myself as fully healthy. At work I don’t trumpet my genetic flaws. I don’t gush about my deterioration to new friends. I wear a cloak of normality, but underneath, the muscular truth lurks. One day in the near future, when my orthotic arrives to assist me to walk or a Segway is called upon for transport, I will finally land with my rightful family. For now, I am mentally dangling.

Finding my fit

Since being “out-classified” I have adopted a more philosophical approach to my body’s deterioration. No man-made system can pigeonhole my physique or my life. I have climbed Mount Kilimanjaro, cycletoured through Europe, gotten married and achieved success at work.

My latest mission — and my wife’s — is to have a healthy child. We already have had one attempted in vitro fertilization cycle using preimplantation genetic diagnosis (PGD). This is a process whereby geneticists implant only embryos unaffected by my faulty gene. We are to return to England to re-attempt this process.

For me, this is the real world championships. The prize is the ability to give my child — or, hopefully, twins — a fresh start. To avoid all the nettles and barbs that can sting the soul of somebody who looks different. My soon-to-be role as a dad supersedes all concerns or worry about where I fit in. I will carve out my own sense of belonging.

Eugène and his wife, Monique

Cycling still runs in my blood. On any given morning you’ll find me readying my bike for a ride. I clip my shoes into my pedals and ride, oblivious to what my body looks like, oblivious to the deterioration of my muscles.

Rather, I revel in the clicking of my gears and the familiar tapping cadence of my pedal strokes. I cycle into the distance knowing full well that I am harnessing the power of my body and storing these sensations deep into my memory banks.

I know I will ride on, long after the pedaling stops.

Eugène and his wife, Monique, live in Johannesburg, South Africa, where he is a senior business analyst for a software development company. His extensive travels include spending a year in the U.S. in the mid-1990s. Says Eugène, “I come from a family that has been hit hard by muscular dystrophy. We all love adventure and travel. We are a close-knit family, and that makes all the difference.”

Your rating: None Average: 5 (2 votes)
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy