Shelley Lynnda Marie Stewart

Portage la Prairie, Manitoba

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When I got the invitation to submit a personal story regarding my life with a disability, I was excited and deemed it an honour.  I have done this many times before and am so very proud to be able to do it again. 
 
First of all, my name is Shelley Lynnda Marie Stewart (maiden name—Reshaur) and I started my life’s journey over 46 years ago.  I was born in Gladstone, Manitoba, on March 6, 1965, and from the outset there was debate over whether or not my life was worth living.  Due to a doctor’s error—which was admitted to my parents—I was born with cerebral palsy.  As a result, I am not able to speak or walk, and from that first day the question of whether my life was worth living became an issue.  The only reason I know this is because my dad told me that the doctors came to him and my mother to tell them the news that I was "badly disabled" in their words and that life would be difficult and not worth living!  And they would advise my parents  "to simply let me slip away" and that would be the best thing they could do for me. Thank goodness, my dad and mom bundled me up, got me out of there, and took me to Winnipeg, and there—thanks to Mom and Dad and doctors that thought otherwise—I got to live! 

I can't possibly tell you everything that has happened in my life, and all the challenges I have faced and conquered, but what I can tell you is this—my life has been worth living!  Disability or not, it’s my life and I have enjoyed every minute of it!  Disability is only a word and it’s what the person with the disability makes of it: one can choose to make it a big deal, or one can learn to live with it.  I chose to live with it.  I am married—something I was told would never happen—why?  Because I was told that no man other than my dad would love me!  That was told to me by one of my "special education teachers!" I proved her wrong. I also have a soon-to-be 20-year-old daughter, also something that was not supposed to happen according to the experts.  Again, I proved them wrong.  I have had a great life and it’s been of great value. 

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I have advocated for myself and others on many occasions. I got to use my speaking computer to give a presentation to a large group of people regarding the Tracy Latimer case, whereby a father, much like my own, decided for his disabled daughter that her life was not worth living and so "gassed her to death!" As I said then, had my parents thought like Mr Latimer, I would not have been here to enjoy the life that I have.
 
I have been able to help other children with disabilities by going to my daughter’s school when she was young and telling kids about my disability, and allowing them to ask questions.  I got to speak in front of a school board and explain to them the importance of allowing children with disabilities to be included in the "regular" classroom like every other child, not putting them aside in some special ed classroom where they are looked upon as different and even made fun of as was the case when I went to school.  I got to help teachers with a young man a few years ago who, like me, had cerebral palsy and was unable to speak or communicate.  The school and the parents of that young man brought me in to help give them some points on how to communicate with him and also see in his eyes and his vocalizations whether or not he was understanding them.  I always found that interesting that the "experts", fully university-educated speech language pathologists, teachers and teachers’ assistants would have brought me in to ask for advice. I am proud of what I have accomplished with a life that many had said "wouldn't be worth living!"  and a "hardship on my dad!"  Well, my dad never once said it was a hardship; to him I will always be his "sidekick",  one of his 5 children that he loved unconditionally.
 
About my husband Ron--well, here is what he has told me many times--"Shelley, you have done more for me than I have ever done for you!"  And he has told me this, "Shelley, you have made me happy in every way!"   I don't think I need to spell out specifically what he means by that; the smile on his face explains it.
 
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People with disabilities have a place in society and can make a difference.  As people grow older, there are many now who never had a disability before, but who do now because of age or sickness. Disability is not a reason for giving up on life; it’s merely a reason for working harder on living life.   
 
I have enjoyed every minute of my life. Yes, I am in a wheelchair, and yes, I cannot speak vocally, but my goodness, look at what I have lived to see come about.  I have lived to watch the development of—and to use—new assistive technologies that have opened up a whole new world for folks like me who are living with a disability.  I am able to use a computer to communicate and search the world around me, I am now using a Dynavox V speech generating computer, and now I can talk to everyone.   That same computer allows me to surf the web and bring a whole new world to me.  Add to that, I can better advocate and speak for myself.  I now hire my own independent living attendants to help me in my own home, I get to actually argue with my husband (joke), my goodness, life is great and it can be that way for all people with disabilities so long as governments and so-called "experts" notice the person first and not the disability. 
 
Yes, supports need to be in place for folks like me, but if they are, those with disabilities can live a full and active life, they can get involved in community issues and add their voices and ideas to make things much, much better.  We create many and varied well-paying jobs for those who are not disabled—those in health care, home care, self-managed care, assistive technologies, rehabilitation engineering, social workers in Employment and Income assistance, speech language pathologists and the list goes on. These jobs are created because there are people like me, people living their lives to the fullest with their disabilities. We can and are a valuable asset to society if given the supports and the chance to be fully included in everyday community life.  Get to know us, and you will find we are wonderful people, friends, colleagues!  
 
Yes, we need these and many more supports to live our lives, but our lives are indeed valuable and worth living.  I have loved my life and will love it to the day I cease, but I know that I have made a difference because my mom and dad didn't believe those "experts" so many years ago when they tried to have them "just let me go," as they put it.  Mom and Dad let me live with my disability and my life has been great because of them.  Through the years I came to meet people who like mom and dad believed life is worth living for those of us with disabilities, and they rallied around me to help me do it, and I thank them all.
 
The first one I thank always is my hero—my dad—who pretty much all by himself taught me to be strong.  When my mom died in a car accident when I was 9 years old, my dad took over, and kept me believing in myself.  He would tell me, "You have to be stronger than most, Shelley, because of how people will look at you,"  and so he taught me to be confident in myself and more than that, he made tools and toys that would help me to be stronger physically.  Dad knew for example that I would need to have a strong neck so that I could move my head in order to communicate and later to drive my motorized chair, so he would make toys that would help me to exercise the muscles he knew I would need.  So my supports started with my beloved dad, and then so many more after that.  So yes, disabled people can live a full and wonderful life if surrounded by the right people and the right supports.  And thank God they do exist!
 
This is a short personal story. I could tell you stories that would make your hair fall out regarding the attitudes of society—and those who took advantage of me—but those things only served to make me stronger and the person I am today.  I honestly don't see myself as a disabled person, just a person who has had to live a different way of life, but a life just the same, a life I have lived to the fullest!  A valuable life.

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