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The French long-distance runner changing perceptions of disability

Grégory Mouyen is paralysed down his left side and has epilepsy. He tells The Connexion how he is breaking down the barriers of disability one ultra-marathon at a time

Grégory Mouyen long distance runner

‘As long as I’m in good health, I will run for the rest of my life’, Grégory Mouyen Pic: Florent Schneider

Grégory Mouyen cannot hide his disabilities. He suffered cardiovascular arrest at birth, is hemiplegic, and since the age of 15 has had to manage uncontrollable epileptic seizures.

But this has not stopped the 40-year-old from running 180 races in more than 55 countries, including marathons and ultra-marathons on four continents. 

His latest challenge was a 13-day race from Bordeaux, the city where he lives and works, to Paris, to advocate for change in society’s perception of disabled people.

To acknowledge his astonishing achievements and advocacy work, Mr Mouyen was decorated with the National Order of Merit, and was named ambassador for Gironde and Aquitaine département by Minister of State of France for Disabled People, Sophie Cluzel.

He told The Connexion how his disabilities have enriched his life, and that physical impairment should not define a person nor their destiny.

Grégory, tell us about your trip from Bordeaux to Paris

I walked from Bordeaux to Paris in under 13 days in a 550-kilometres-long trip that took me across various villages and cities, up until the final day in Paris on 27 November, 2021.

I would walk about 50 kilometres per day from 8:00 to 17:00, with the help of Anne Bonzoumet, Nadine Mahé and the ultra-marathon runner Stewen Villenave. 

I gave talks wherever I went, to demystify the issues disabled people face. 

We were greeted at the Elysée Palace by deputies from Bordeaux and from the Gironde department.

I personally received a congratulations letter from Brigitte Macron, the wife of the President. 

My running guides are to be decorated by Vice-president of the Senate, Nathalie Delattre. 

Can you tell us how you felt throughout this latest trip?

The first day was pure joy, since I was surrounded by my family and all of my sponsors. 

We walked the first 10 kilometres all together. Then I became emotional when it was just the four of us. 

The next day was all about pain, because of my disabilities and repeated epileptic crises. 

I felt alone and scared, but I knew I could count on my two best friends, who waited for me along the route.Anette in Tours, and Séverine Ferrer, godmother of the Joker association for disabled children, and France’s contestant for the Eurovision Song Contest in 2006. 

It motivated me to keep going and never give up. 

Exactly how many races have you run?

I do not know exactly. I have run 25 marathons and a dozen ultra-marathons, but I have stopped counting half-marathons. 

I ran 82 kilometres in 12 hours for Séverine’s association and raised €1,500. 

I ran from Bordeaux to Mont-de-Marsan in 25 hours with my father. 

He is the one who motivated me to run, having taken up running at 40 and having completed more than 80 marathons. 

I felt like I was in the magic potion cauldron in the Astérix and Obélix comics! 

I began with the 2004 Athens marathon, and have since run on four continents. 

How did the cardiovascular arrest you suffered at birth affect you?

I am paralysed on the left side of my body from head to toe. I run, but with extreme difficulty. 

My left arm is non-functional and I can barely move it. I offset a lot from the right side of my body, which you can see clearly has more muscles.

Tell us about what happened when you developed epilepsy 

It was on 1 January, 1987, when I was in La Ruche high school in Bordeaux. My family thought I had cancer. 

I had many epileptic seizures in a day, at the bus stop, on the bus, in bars, in the streets, on the road. I think I had seizures everywhere to be honest. 

People back in the Middle Ages used to call it the ‘demon’s disease’ and I can understand why. An epileptic seizure is really brutal to experience and to watch. 

After graduation came your difficulties in finding a job. How hard was it?

I was rejected by every company once they knew I experienced epileptic seizures. 

On one occasion, I was employed under a CDI contract and put to the test with two other employees. I didn’t tell my colleagues about my condition until a week after I was hired. 

I was fired after they told me that they were downsizing the three roles into one, but I later learned that I was the only one they fired. 

Handicall contacted me six months later, after I had published my book.

Tell us a little more about Handicall. What do they do?

Handicall is a French call-centre company that specifically recruits disabled people. They run offices in Lyon, Chartres, Tours, and Paris, and have more than 350 employees. 

I have been working at the Handicall Bordeaux offices since 2014. 

I told them I had epilepsy on day one. They told me they put their people first. They have been taking great care of me. 

I have been their ambassador ever since joining the company. 

Is France sufficiently adapted for disabled people? What is your take on France’s recent policies towards people with disabilities?

It is getting better since a speech from the former President Jacques Chirac on July 14, 2002, in which he pledged to take on the issue of disability by opening more job positions and adapting infrastructures to people with disabilities.

But there is still a long road ahead. 

Which issues are you most passionate about fighting for?

I want to change perceptions towards people with disabilities. 

When people look at me, it seems that first and foremost they are making a biography of my arm and my leg. 

But I have a face, and my name is Grégory. 

I want people with disabilities to keep receiving the allocation aux adultes handicapés (AAH, a €903 social benefit) after getting married, something that is not the case right now. 

I also want the AAH to be raised to equal the SMIC (salaire minimum de croissance or minimum wage), €1,269 net.

Is running the best way to fight for your cause?

Yes, because the message speaks for itself during my talks, in which I tell people that no matter what their condition they can achieve anything. 

I went back to my high school recently, where one student revealed to her class that she had epilepsy, something most of her classmates didn’t know. 

She told me I gave her the strength to speak up. Her actions impressed and moved me. 

I know it is provocative, but I will say it anyway: my disabilities have given me a chance in life. 

Would I have run so many races if I didn’t have these conditions? Probably not. 

I have to admit I am not happy to be hemiplegic, but I’m surrounded by a loving family and company that have given me strength. Without them, I would not have succeeded. 

What is your next challenge?

My boss and my family are worried about me because I want to run the Madagascar ultra trail again! 

On a spiritual level, I would like to walk to Saint-Jacques de Compostelle from Bordeaux. 

Or maybe I could go for another challenge. 

As long as I’m in good health, I will run for the rest of my life. 

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