She is a young woman like many people of her generation, very present on social networks. But while others display their fashion or make-up favorites, demonstrate their talent as a seamstress or their love for animals, Julie Fremaux has chosen to share her daily life and discuss a subject that concerns her directly: disability.
Julie was born with a biopercular dysplasia similar to schizencephaly, a malformation of the nervous system which severely handicaps her. She is confined to an armchair, unable to perform coordinated movements. And she can’t talk.
“My disabilities are motor, there is sometimes a mental retardation associated with this type of malformation, but this is not my case”, explains the young 31-year-old woman using an eye-controlled tablet and voice synthesis that she was able to acquire recently (read below).
A unique window
On her Youtube channel “Julie & Handicap”, she has been publishing videos for a few months on a wide variety of subjects. She, of course, first mentioned her birth in Grenoble and the discovery of her disability, her family and her childhood in a nursery until she was 5 years old, then in a medical-educational institute in Hyères, until she was 11 years old.
After living with her parents between the ages of 18 and 25, in La Londe, Julie was able to access independent housing, again in Hyères. She lives alone, accompanied on a daily basis by a medico-social support service for disabled adults (SAMSAH). His first videos tell this journey, his daily life, his hobbies.
But very quickly, Julie expanded her themes to address, always through the prism of disability, the issues of friendship, sexuality, parenthood and more generally the place of disability in today’s world. “I do this for all people with motor, sensory, mental or psychological disabilities who cannot talk about it”, she explains. She also organizes interviews with other disabled people: a mother and her autistic child, one of her friends…
“I want to show that I am like everyone else, just with motor skills that prevent me from doing things by myself. But I have the same dreams, the same desires. I want to change the vision of disability by sharing my experience. Disability is complicated to understand, manage and accept. I had a hard time accepting it myself when I was a child; it’s easier now that I can talk about it.”
Talking about it, and above all sharing it: his Youtube channel still only has 45 subscribers and the videos can discourage the impatient, used to everything going very quickly. Because of Julie’s handicap, the exchanges are slow. So you have to know how to take the time to listen. A very small effort to provide for the exciting discovery of the world of disability presented in a singular way, and with great sensitivity, by Julie.