“Let’s stop holding ourselves back!”

Accroche

Alice Lapujade, a young women challenging prejudice

Testimonies (18/09/2018)

Résumé

“We need to rise above the trauma of disability. If we stay in denial and shame, we can’t change how others see us.”

Contenu
Body

Arriving at Fondation Pour l’Audition, Alice Lapujade, aged 26, flashes a winning smile that could easily make us forget the challenges she faces day to day.

This young woman has Usher syndrome, which in her case means severe hearing loss, as well as retinitis pigmentosa that could develop into total blindness.[1]

“When I was little, I had a lot of ear infections. An ENT specialist diagnosed mild hearing loss, which got worse during my childhood.” At the age of 13, her parents found out that she had retinitis pigmentosa.

Citation
“They understood it wasn’t just fear that was making me hold onto them in the dark.”
Body

During adolescence, Alice did not want to talk about her dual sensory loss to her friends out of shame and in particular a “desire to be like everyone else at that age”.

Then one day her disability became impossible to hide. “It became too great a burden. After my studies, I wanted to travel abroad by myself for a few months. I realized that strangely, it was easier for me to talk to people who didn’t know me than the friends and family I was hiding my disability from.”
Back home, Alice understood the importance of meeting other people with sensory impairment. “I needed to talk about my disability and I thought it would be easier with people who were experiencing the same things as me. It would also be easier to laugh about it together.” Quickly she made friends and was able to talk freely with another young woman who had retinitis pigmentosa. That is how she discovered “Vue d’ensemble,” a Strasbourg-based association that campaigns against the sedentary lifestyle of people with visual impairment.

This association was behind “Défi Baikal,” which Alice and her friend took part in at the beginning of 2017: a Siberian expedition by seven two-person teams, including both people with visual or hearing loss and fully autonomous non-disabled people. The aim was to change perceptions of the personal abilities and skills of people with visual or hearing loss.

“I knew the project would be covered by the media, so it was an opportunity for me to talk about my disability with people who knew nothing about it, while promoting a very positive image. The main purpose was not a physical challenge but a human experience. That’s what struck us all. We wanted to show another side of disability.”
When Alice was asked what most impressed her about the adventure, she talked about the way the participants helped each other. “We realized everyone needed help and that it wasn’t all about disability.”

Alice has understood the importance of speaking out. “It’s a sort of personal vengeance. For a long time, I was ashamed of my disability. I even hid my hearing aids behind my hair. But I realize the more you talk about it, the more people understand. Often, they’re even very curious! I want to keep changing the way people see disability, to show that it’s possible to do many things and you shouldn’t ever stop, even when difficulties arise. And for everyone else, the message is: be curious and don’t be afraid!”

Alice keeps smiling when asked about her future, imagining her next adventure. “It definitely takes time and money to travel to the other side of the world, but this summer I’m going to walk in the Alps with Montagnes du Silence, an association that helps people with hearing and vision loss to discover the mountains.” In the meantime, Alice participates in disabled sports and is helping raise funds for Usher syndrome research.
Careerwise, Alice has just completed a contract at the Paris regional council and will join the French National Public Finances School as an inspector in September. 

WHAT WORD BEST SUMS UP YOUR ACTION?

Citation
« I have three words: resilience first of all, to rise above the trauma of disability; then openness to yourself and others; and finally sharing, which is the most important one for me. »
Alice Lapujade
Body

There are things we can’t change, like our disability. But the rest we can and should change! Let’s stop holding ourselves back!

[1] Some people with Usher syndrome may also have problems with their balance.