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Home > Dwarfism > People with Dwarfism > Testimonies > Marie-Josée B.
 

Hello everyone,

My name is Marie-Josée. I am 27 and I have been member of the AQPPT since 2004. I was asked to give an account of my experience as a little person, and I am happy to do it. I hope that I can help parents of children of small stature as well as young children, adolescents, and young adults of small stature by telling my life story, which is quite unique!

My form of dwarfism is multiple epiphyseal dysplasia. I am only 3 feet 6 inches tall. The word "multiple" means that I have other disabilities that are of a sensory kind: auditory and visual. I am hearing impaired, fitted with two hearing aids. I am also visually impaired, because I had congenital cataracts followed by corneal opacities. At age 10, I received the diagnosis of peripheral neuropathy: insensitivity to pain and to hot and cold, not to mention foot problems. Around the age of 13 years, they discovered another metabolic impairment: a deficit of cortisol, the stress hormone secreted by the adrenal glands. I have now been on growth hormone (Nutropin AQ) to regulate my metabolism for 4 years. I think it is good enough. I would say in jest that I won the lottery... of diseases! Without mentioning the numerous visits to hospitals: endocrinologist, nurse (for foot care), ophthalmologist, audiologist, orthopedist, hearing aid specialist, etc.

Morally and psychologically, it is hard. I would be lying if I told you otherwise. It is difficult dealing with all these limitations. In fact, you will probably be surprised but the handicap that I have the most difficulty managing that leads me to a lot of frustrations is not my small stature but my hearing disability, the fact that I am hearing impaired. I think it is a reality that few people know about. People are familiar with the term "being deaf", but few know what is "being hard of hearing." I speak very well because I had speech therapy for language problems at an early age. Many are surprised to know that. I often ask people to repeat or not to cover their mouth because I read lips. There are a number of little things that one does not always think about. Being visually impaired is not always easy either, especially when being of small stature takes a complete reorganization such as finding safety tips, which requires a lot of resourcefulness. Everyone knows what being blind is, but the terms "visually impaired" or "partially sighted" are less known..

In terms of mobility, I have several ways to get around: my legs for short distances and a Go-Go scooter for long distances. To get to non-adapted places, I have a manual wheelchair, which requires another person to push me. Sometimes this is the trade-off for inaccessible places. When I have joint pain, I use Canadian crutches. Let us say I am well equipped, and you can say that again! I do not have a car because of my vision. So, I travel using Paratransit, a special transport service run by the STM (Société de transport de Montréal).

In spite of everything, I did not stop doing things like everyone else, but to to achieve all this, my mother was always present all throughout my academic progress, up to university. At that time, I decided to take matters in my own and be more independent by leaving home. My mother is still there for me, no matter what. Entering the world of education was a relentless and exhausting battle. Unfortunately, it is still the same at university. It requires a lot of tenacity and determination. Many did not believe in me, even the doctors believed that I would never finish high school! Going through elementary school was one of the periods that left me very painful memories. I am always amazed to hear some little people tell me they never experienced the rejection of students either in elementary or high school. Therefore, I have assumed that perhaps it was not my small stature that was the cause of my rejection but my limitations altogether and the closer attention that some teachers focused on me.

Adolescence ... What a stormy period! I was outraged to be multi-disabled and over-protected by some people. I was in the middle of an identity crisis, in full pursuit of the meaning of life. During that period, I would not recognize myself as a little person or disabled person. I would shout to everyone that I was a normal person, period. If someone stubbornly tried to make me understand that I could not be normal, I would hit the roof! It took me a while to understand that indeed, I could not be normal, I was simply a multi-disabled person. In fact, I could say "normal" but someone who lives with limitations. It is hard, very hard to be accepted without feeling a bit skeptical about some people.

Despite all this, I started college at the Cégep Saint-Jean-sur-Richelieu in the Arts and Literature programme and followed the culture and literature option. Before anything else, I would like to say that all throughout high school, I dreamed of becoming a social worker. However, I changed my mind because I was not feeling up to the task and I was terribly scared of judgments about my disabilities. I always wondered what kind of remark people could make about my size. As it is, several people who meet me for the first time take me for a child. How can I explain to them? Children and the elderly often made me fear the worst scenarios... Let us say that indiscreet questions are not lacking! Sometimes I get fed up having to repeat the same thing all the time, and I feel like clamming up, not talking to anyone anymore so I will not be bugged.

On the other hand, humor helps to defuse situations. Perhaps with time, I will better understand this principle, but when you have limited tolerance it is more difficult to apply.

I had never thought of getting a university education, but In 2003 I had a summer job at the Société d'histore du Haut-Richelieu (Historical Society of Upper Richelieu), and I fell in love seeing the genealogical, historical archives, etc. I asked about the academic training in documentation, archival science and employment opportunities in this area. I saw that the University of Montreal offered a Certificate in Archival Studies. I applied and was accepted. They recommended, however, that I get a bachelor's degree because I would have more employment opportunities later on. So, I did a second certificate in digital information management. Currently, I am doing a third certificate in youth intervention. My dream of becoming a social worker had never left me, and somehow I realize that. In general, university has been a big challenge for me. I have met many obstacles and that requires a lot of character, perseverance, and most importantly, belief in one's dreams and abilities. To surround myself with people who believe in me and encourage me in whatever I do is very rewarding, and it makes me feel more like continuing. I would like to mention that during my academic career, I worked two summers in Montreal: for the borough of Rosemont-La Petite-Patrie of the City of Montreal and for the AQPPT. The other three summer jobs I held were in St-Jean-sur-Richelieu. Working has given me the feeling of being useful, of being somebody. I have also volunteered, to name only one, as member of the board of directors of the AQPPT for two years.

Ever since my adolescence, I have wished I could write my autobiography. I would love so much to destroy the prejudices and sensitize others to the reality of people with disabilities. If there is one thing I really hate most in the world it is pity and human stupidity.

Apart from my studies, my hobby is listening to music. I cannot live without it; it is like a real drug to me! I like to write, read, and go to see my friends. I love the Internet, my computer taking up most of my time considering that it is an essential tool for my studies. I like billiards, bowling, and above all I like dancing! Sometimes I sing. Dancing, singing, and writing have been my great saviours when I was going through difficult times. It was my therapy and it still is.

I leave you with a quote from Albert Camus that applies well to our reality: "In truth, the way matters but little; the will to arrive suffices."

Marie-Josée B., January 2009

 

 
 

© 2011 AQPPT - Translated by George Bravo and Judy Murphy