“I am a standing woman”

Our jury of readers has just awarded you the Pilgrim Prize for Testimony. What does this award mean to you?

It touches me and honors me. This book was a risk-taking: I bare myself, it’s very intimate. I’m a little surprised and very grateful that such a personal experience can connect with other people and resonate with their own story.

Your book begins right away. In 2020, in the middle of a dinner with friends, you can no longer grab your cutlery…

I had already lost my ability to carry out small everyday actions, but at that moment I realized that I would never be able to eat or drink alone again. This is the slow progression of spinal muscular atrophy, the degenerative disease from which I have suffered since birth. Suddenly losing the use of my arms is a brutal loss. At dinner, I don’t talk about it, pretending that I’m no longer hungry. No question of arousing pity. Above all, don’t lose face. In fact, I was afraid to admit this new loss of autonomy to myself. At the very beginning, I was worried about it… Quite quickly, I was able to say it simply. It was a lesson in humility.

In your daily life, what reminds you that society is not adapted to people with disabilities?

All. Most people don’t realize how much trouble we experience when we’re in a wheelchair. For example, I can’t take the subway or enter a restaurant with two steps at the entrance. Seeing that nothing is really changing on the issue of mobility makes me angry. During the Paralympic Games, everyone sang the refrain “disability is wonderful”, “inclusion is beautiful”… and, a few days later, we forgot to appoint a delegate minister for 12 million people in France?* It’s humiliating. For too long, I have noticed that there are many announcements but, in concrete terms, very little improvement.

The Paralympic Games were still the occasion for great popular momentum. Are you happy about it?

Yes, I was touched by this collective joy. Even if we still have a distorted relationship with disability. The people valued in such demonstrations have surpassed it. I’m not sure it should be exceeded. Many people in my situation can’t or don’t want to. Even to people with disabilities – especially them! –, we say: “Perform and adapt!” » Let’s not reverse things: it’s up to society to adapt. Not everyone has what it takes to be a Paralympic champion.

However, you yourself spend your time surpassing yourself!

This questions me. When I undertake a business, do I do it because I need to restore my credit in the eyes of the world? I have a spirit of challenge, and that’s positive. I just hope that everything I do doesn’t serve to transcend my disability, because that would be a bad reason.

In your story, you mention in particular the issue of air travel. Here too, it’s obstacle upon obstacle…

My chair is the only place in which I feel good. On a plane, I have to do without it, dismantle it and put it in the hold. Every other time I find it broken. The day after returning by plane to Paris, I know that I will have to take it to the repairer. On board, it was impossible for me to go to the toilet. This is not normal, we would not treat any valid person like this. Here too, public policies are not up to par.

Was it to help raise awareness that you ran for the legislative elections in Paris?

I wanted to embody a candidacy without labels which carries the voice of disability. Of course, we had no chance, but I will remember these crazy two weeks for a long time. We got the score of 1.25%. That’s not bad for someone who came out of nowhere. The slogan of my poster caught people’s attention: “A woman standing”, even though in the photo I was seen in my armchair with my assistance dog!

If policies are failing, technology allows progress. You benefited, for a time, from a robotic arm. Why not extend the trial?

With this tool, I gained freedom, I drank and ate alone. But he was intrusive and put a barrier between me and the others. I realized that addiction is a dating grace. Saying to a stranger: “I need you to eat” is really hard, a little humiliating, but creates a very strong relationship with the person. I have thus built beautiful and deep friendships. I see myself again at the Collège des Bernardins, in Paris, where I studied philosophy. I stood in the lobby asking passing visitors if they wanted to help me with lunch. I felt like I was begging. But without shame. I was looking forward to meeting someone with whom I might have a great time.

What do these encounters transform in you?

I am taking on a challenge: reconciling myself with disability, dependence, fragility. I myself have long been handicapped. I couldn’t stand this environment which reflected back to me an image of myself that I didn’t like. Since my conversion, every year, I return to Lourdes to advance on this path of reconciliation. It’s not easy. And it’s never over. Every time I think I’ve arrived there, a word, a gesture, reminds me that I’m not there, that I still don’t like this universe. In a sense, this is good: every day we are called to convert.

How did you become Catholic ten years ago?

The Catholics I met during my private schooling gave me the image of normalized and reactive people. In 2014, I went to a friend’s wedding without enthusiasm. I was going to find myself again, I told myself, with a crowd of stuck people… And I had an excellent evening, in the company of welcoming and open guests. Suddenly, it was obvious: my “super cool pubard” friends with whom I worked, were missing something compared to these Catholics I met at the wedding. They had “a little something extra”, and I was full of prejudices.

What next?

I went to a mass in Paris. Just to see. At the moment of the exchange of Christ’s peace, the priest, whom I did not know, came to me and said: “Ah, you have come, I am so happy that you are here! » For me, it was obvious that God the Father, through him, was delighted to see me return to his house. I was upset. So, I trained, moved closer to my parish in a working-class neighborhood where I discovered a face of the Church that I love: joyful, poor, multicultural, plural. A true celebration of diversity. I also got involved with homeless migrants.

Your book is also an ode to friendship. Is it important to have friends who don’t believe as you do?

It’s fundamental. I have many Muslim friends. They are the ones who taught me best how to pray. I love their sense of transcendence, the way they anchor their faith in everyday life. I also have Jewish friends and my best friends are staunch atheists. I would be very unhappy in an environment where everyone thought like me.

Even with a magic wand, you write, you would not wish to remove your handicap…

It is so linked to who I am… It has shaped my character and allowed me to develop qualities, to be combative, capable of bouncing back, of adapting, of putting others at ease. Not to mention my sense of humor, something many disabled people have in common. It’s first and foremost a way of laughing at ourselves and putting everyone on the same level.

* It took a week for this oversight to be repaired with the appointment of Charlotte Parmentier-Lecocq on September 27, 2024.