I’ve studied tourism and this is the area I worked in, but my life changed twice. First when I was 24 years and I found myself in a wheelchair after my first delivery and then seven years ago when my husband left me.
Suffering from a severe disability, unable to live alone, I fought to be able to continue to live at home with my children, continue to assume my role as a mother as I had always done and be supported preserving our balance .
I now enjoy personal assistance for five years. If my first goal was to ensure my survival and my family, I gradually regained quality of life thanks to the help I received, having again “hands” that allowed me to do activities I had for a long time abandoned.
Today, without exaggerating, I can speak of rebirth. I rediscovered a social life, activities and a lust for life. I especially found myself again. I did not realize how much I had forgotten myself.
My children have grown, our roles have never been reversed and it is naturally and peacefully that one day they will take off.
What is your personal experience of disability?
My delivery triggered Devic’s disease, an autoimmune disease affecting the spinal cord and optic nerve. I have a tetra paresis and I am almost blind. The disease has been known for a short time and grows very fast. For over 10 years I’ve had different diagnoses and tried several treatments which fortunately seem to have stopped the disease, … I keep my fingers crossed.
How did you discover the Independent Living movement?
In 2003 the personal assistance budget was “in the air” in the Walloon region thanks to activism as it was already official in Flanders. I discovered his origins, the Independent Living movement only much later but unwittingly, since my first letter to the minister I was defending all his principles!
Is there an area of Independent Living that you are especially interested in?
First of all, the respect and dignity of the person and thus a particular interest to the quality of services that will be offered. Then, the possibility for the person not to be his/her handicap but to be a full citizen! It’s a slow evolution, an matter of awareness both for the person himself than for the society. A real challenge!
Who has influenced you the most, and how?
First of all readings, the report from the University of Mons that was following the Walloon project, the hazard of an article on the Freedom Drive and a French website where I discovered the movement and particularly a text of Adolf Ratzka “Independent Living emancipates the people with a disability.” And then meetings with Flemish beneficiaries or as last year, a European meeting with Jamie Bolling organized by the Expertise centre Independent Living from Ghent.
You are not alone!
My children, my family. A wheelchair is an image hard to carry and a severe disability is hard to live with. You always have to fight on many fronts, but I won!
I also recently created an association of beneficiaries of personal assistance budget
“Together for Independent Living” (www.eva-bap.be) following the model and with the support of the Flemish association “Onafhankelijk Leven” to promote and defend the right for independent living in Wallonia.
Do you have a favorite saying or proverb?
Not on a personal level but in terms of associative, I recently read a phrase from Gandhi: “what you do for me, but without me, you do it against me” … ENIL slogan!
What motivates you to get up in the morning?
Honestly, sometimes I would like to wake up no more, because I have never accepted my dependence. Even after more than 20 years, the first transfer of the day to take me out of my bed always seems so heavy to me. And then there’s this inexplicable force that pulls you by the tip of nose!
What do you like to do when you’re not working?
I love to cook, create, innovate in many areas: design, garden, sewing (clothes adapting) … what I can do thanks to my assistants who are my hands. And enjoy the sun when it’s there!
If you could invite anyone to a dinner party, who would be your ideal guests?
The Dalai Lama to find the path of peace and serenity. Open hearts and give (back) the human being all its value.
What advice would you give to young adults with a disability?
Be proud of the person you are, do not let the negative representations of society be your mirror. Try to protect but not to isolate yourself and share with your peers, it is always rewarding.