Alice Lapujade is a young woman fighting against clichés. She went in an expedition in Siberia, composed by 7 pairs of hearing or vision impaired.
When Alice Lapujade got in in the Fondation Pour l’Audition premises, the 26 years old woman was showing a big smile, making us forget the hard challenges that she faces every day.
Alice has the Usher syndrome, she presents a profound deafness and a pigmentary retinite, which can evolve into a total vision loss.
« When I was a child, I used to have a lot of otitis. An ENT diagnosed me a slight earing loss, which evolved all along my childhood ». Her parents learned that she had a pigmentary retinite when she was 13. « They understood that I was not holding their arms in the darkness only because I was afraid. »
Through her adolescence, Alice didn’t want to talk about her double sensory impairment to her friends, « because of the shame » and mostly because « you want to be like everybody at this age », according to her. Until the day that hiding the handicap was impossible « It started to be too hard to handle. After my studies, I wanted to live a few months in a foreign country. I realised that it was strangely easier to talk about my handicap with strangers then with my relatives, who did not know about it ».
When she came back, Alice understood that it was necessary for her to meet people with the same sensory impairment. “I needed to talk about my handicap and I told myself that it would be easier with people who lives things as I do. It’s also easier to laugh about it when you are several to live with it”. She quickly made a friend with a pigmentary retinite, and she spoke freely with her. This is how Alice discovered the “Vue d’ensemble” association from Strasbourg. This association struggles against blind people settlement. “Vue d’ensemble” gave birth to the Défi Baikal, a challenge done by Alice and her friend in early 2017.
The Défi Baikal is an expedition in Siberia, composed by 7 pairs of hearing or vision impaired, and full self-sufficient people. The aim? Changing society’s perception about deaf or blind people personal capacities and skills. “I knew that the project will be publicized, it was an opportunity to touch people who didn’t know about my handicap and send them a very positive image. Otherwise, the main objective was more the human experience, than the physical challenge. It left a mark on all of us. We wanted to show something different about the handicap”.
When we ask Alice what affected her the most, the young woman insists on the mutual aid among the participants. “We figure out that, at a certain moment, everyone needs some help, and it’s not only a handicap matter”. Now, Alice realized the importance of bespeaking: “It’s a bit like a personal revenge. I’ve been ashamed of my handicap for a long time, I used to hide my hearing aids with my hair. However, I can say now that the more I speak about it, the more people understands. They are even often curious.I want to keep changing the view on handicap, showing that it’s possible to do a lot of things, we should never stop, even if it’s getting tougher. And for the other people, be curious and don’t be afraid!”.
When we speak about the future, Alice keeps smiling, and she’s already thinking about her next journey. “It’s certain that going at the other end of the world requests time and money, but from this summer, I’m going to walk in the Alpes with the “Montagnes du Silence” organization, which aim is to give an opportunity to deaf, hard of hearing, and hearing people to discover the mountain”. Meanwhile, Alice practices diligently the handisport et takes part to a fund raising to finance the Usher syndrome research.
Professionally, Alice just ended her contract with the Ile-de-France Regional Council and she will enter in the Ecole Nationale des Finances Publiques as an inspector in next september.
IN A WORD, WHAT WOULD SUM UP YOUR ACTION?
“I’ve got 3! Resilience first, to go beyond the trauma and the handicap. Open-minded next, about ourself and about the people. Then sharing, which is for me the most important. Some things can’t be changed, like the handicap; The rest, we can, and we have to change it. Stop holding ourselves back!”