Benoît Roberge

Montréal, Québec

Benot_Roberge.jpg

Hello, my name is Benoît Roberge. I am 19 years old and I was born on July 21st, 1991.

My mom saw on the monitor that something was wrong. The doctor said it was normal. My pulse was low. I was reanimated twice at birth. I have cerebral palsy: I cannot use my arms, nor my hands, I need help for feeding and I get around using a motorized wheelchair. I cannot speak.

I wasn’t an easy baby. When I was six months old, I cried all the time. Very soon, my father realized that I was intelligent. In order to cover my cries, he played  “You give love a bad name” from Bon Jovi. When I heard the music, I stopped crying right away. Then, he lowered the volume, and I started crying again. He used the same strategy a few times and then he exclaimed, “I found something!”  It was the first time I reacted to my environment.

I lived in Ste-Anne-des-Plaines until I was six. I have very good memories of that time in my life. My family was very present. My aunt was our neighbour. My mother had a daycare centre at home, and it was a very stimulating environment. My cousin attended the daycare center. He ran everywhere. I had a walker and when he ran by, he pulled me so I could walk faster. I loved it. At that time, I communicated through eye gazing. My mom had me do activities with pictures.

In 1995, when I was four years old, I started school at Jean Piaget. This is a specialized school for children with a physical or intellectual impairment. I got my first communication tool. It was a board with nine pictograms which I pointed at using either hand—sometimes  I used my right hand, sometimes my  left one. I also got my first communication device at age five. It was a portable computer equipped with a synthesizer and the Talking Screen software for Window ’95. I activated it with my foot through a joystick.

At  6, I moved to Montreal and attended Victor Dore School. I had a board with color and number coding. I pointed to the pictograms with my eyes. First, I pointed to the colour of the pictogram and then to the number that was written on it. The person to whom I was talking only had to look at my board to see which pictogram I was indicating.

In 2001, at age 10, I got another  communication device. I can read now and I have access to vocabulary using letters, words and pictograms. It is a GETAC  from Gus communication.  It is a computer tablet equipped with BoardMaker and Speaking Dynamically. Unfortunately, that device was often broken. (battery, mother board, cables, etc.). I did not use it very much because it was almost always being repaired.

In 2003, I started high school at Joseph Charbonneau and in 2006 I got a new communication device: the Pathfinder from Prentke Romich. It is equipped with Word Power software. It is my communication aid now.

I control both the communication device and my wheelchair with my feet. I access to the PathFinder in scanning mode with a switch located at my left foot, while my right foot  activates an omnidirectional lever that I use to drive my wheelchair and access my computer.

When I was younger and I could not use my communication device, I was dangerous! I used my wheelchair to express my aggression. When I did not have my device, things were bad! For instance, in a situation that got me mad, I could not speak, but I knew I was mad. When I am mad and cannot speak, some people realize that and take advantage of that. Imagine if your tongue was cut off and people bug you. You would want to harm them to tell them to stop, and it was in these circumstances that I used my wheelchair.

Now, when I don’t have my communication aid, it is hard to be understood. I feel discouraged and mad, but I control myself.

Thanks to my communication aid, I can express my thoughts. I was taught something: in life, there are three kinds of persons: the strong ones, who smash the weak ones and those in between. Since I had my communication device, I can say what I think. In life, you have to assert yourself; otherwise others will take control over you . It still happens to me sometimes, but not so much.

If I had to make a choice between my wheelchair and my communication device, I would rather keep the device than the wheelchair. It is obvious, it’s my voice!  If you had a choice between your voice and your legs, I am sure that you would choose your voice.

I am not looking for friends. I speak to those who speak to me and that’s it! I wait for the person to come to speak with me. I am afraid that I won’t get understood well, and that will result in misunderstandings.

My main leisure is computer. I am always on the computer. That is what gives me the most satisfaction. I spend my life online. After all, I have my computer, I am in my bedroom and I am happy.

In the future, I would like to work with computers:  I would like to assist people to fix their computer bugs. 

Go back to Stories