What anyone (including strangers) can do

Little kids look at me and wonder why I'm in a wheelchair.  They are curious and don’t always ask questions; instead they tend to stare.  Everyone silently questions unless they understand my condition.  People often baby me as if I wouldn't understand if they spoke normally.  People often pay extra attention to my family when I am out with them and I feel like they are examining my parents to see how they deal with me.  If another family were in the same situation, people wouldn't notice them as much.

I recall a time when my mother, aunt, and I were driving back to Calgary from British Columbia.  I usually take something to help me fall asleep and then spend the entire car trip sleeping. This time I was just waking up as we stopped for supper.  I was groggy and getting my bearings as we entered the restaurant.  My aunt and mom asked what I wanted to eat but I wasn't hungry yet.  The food arrived and they started to eat but kept asking, "Are you hungry yet?  Do you want to order something?”  I had to keep reassuring them that I was just fine. 

People stole glances at our table, perhaps thinking that this poor girl wasn't allowed to eat.  It became more and more noticeable as they continued eating.  My aunt jokingly said, "Shawna, you're embarrassing us." ‘What did I do?’  I thought.  I was just drinking my chocolate milk.  My aunt gave me a couple of fries off of her plate.  "Eat these", she said, hoping the customers would stop staring.  But I still wasn't hungry!  We all laughed about how ridiculous it was when we got into the car, knowing how it must have looked and that people were possibly thinking that these cruel parents weren't allowing their teenager to eat anything.

Not everyone knows someone with a disability so they act how they think they should (with the best intentions).  Often it feels patronizing and insulting.  I want to be treated like an average person.  I want people to use a normal tone of voice and ask me questions instead of only speaking to the people I'm with.  I want to be told when someone is having difficulty understanding me, so that I can rephrase what I am saying or have someone else explain it better.  I want people to be more aware.

People can become more aware by getting out there and talking to people with disabilities. The best way for anyone to learn about others is to be in a place where they can become part of each other’s life. It was good for me to be in a setting that allowed me to feel included, and this started as soon as I was ready to be more social.

If people were more aware, then they’d pass on this awareness to their children. Children are directly influenced by and learn from what they experience around them. I believe we want what is best for our community and the people in it, so someone needs to be talking about what inclusivity means to young people, and they need to be practicing it often and in many different ways. This type of learning starts at home, between parents and their children.

What families can do

To parents: If you have a child who has a disability, it helps to have a support group or someone to talk to if you don’t know what to do. This will be good because it will get both parents involved and informed.

Secondly, don’t baby your child. If my parents had babied me, I probably wouldn’t be the independent person that I am today. Children with disabilities are capable of much more than you think. See what they can do for themselves first, and if they need help, let them ask for it.

Let your child have a life of their own because, if something happened to you, then the child would have to fend for themself. There are a lot of kids with disabilities whose parents live through them. Try to make sure that your child is as independent as possible.

If your child has siblings, make sure to watch out for negative emotions. Make sure they know that you love them just as much, or they might become jealous of the child with a disability. There are a lot of websites dealing with this subject, such as the following: http://www.med.umich.edu/yourchild/topics/specneed.htm

Last of all, encourage your children to be patient with each other, and find common interests.

Other family members need reminders too

As the youngest in my family, I have an older sister and a twin sister.  They are wonderful and I’m lucky to have them. I know that they love me and are proud of the woman I’ve become. However, a part of me feels like they’re ashamed of me because they have a handicapped sister. I know in my heart that they’re always there for me, but the feeling remains.

Charmaine, the oldest, is two and half years older than I am. When we were growing up, she always included me in her plans. I cannot begin to say how much this meant to me. It was great to be included in her circle of friends. She is naturally a nurturing soul and I am honoured to be an aunt to her two wonderful little girls. I loved being a bridesmaid in her wedding.  It made me feel like I was one of the girls and the dress was actually pretty!   I felt like I was a significant part of an important moment in her life.

After the reception (during the pictures), everybody was drinking wine and becoming a little tipsy.  One of the bridesmaids spilt wine all down her dress. I helped her get it out in the bathroom and everyone was saying, “Who cares? It’s over, they're married already." My view was a bit different and it was important that I continued to be actively involved, so I was very focused on doing a good job with the stain removal.  It is funny how we take things for granted when we are used to having things around all the time.  I don’t take being included and being valued for granted and I know how important it is in our lives.

On the flip side, my relationship with my twin sister, Susan, has been very hard to figure out. When we were growing up, I always wanted to be around her and be her best friend.  In my mind, she already was because I never had a really close friend outside of the family; my two sisters were my closest friends. I have always admired her even when it felt like she was keeping me at an arm's length. In my teenage years, Susan acted like a typical bitch and I let her be like that to me because I didn’t want to give her reasons not to like me.  Every time my parents would get mad at her, I always took her side because I always placed her on a pedestal.  She could do not wrong… or so I needed to believe.  But, I felt that she was ashamed of me and resented me.  She never came out and said it but I believed in my heart that it was true.  She wasn't warm or caring towards me and she disliked that I needed extra attention.  I was her handicapped twin sister.

I know that it was hard for her too.  If she had been able to accept the emotions and admit it to me, then we would have had a good starting point. But I can understand that she probably didn't want to admit it to herself.  I think it must have been very confusing to have such conflicting emotions about one of your close family members.

We never went to family therapy but looking back, I wish we did.  A therapist would have created a safe environment for us to express our unspoken feelings. We never tried having those discussions at home.  I wrote Susan a letter about how I felt but we never talked about it.  Therapy would have given us a place to bring these topics up and ensure that we could all offer our opinions without it becoming too heated.  Our family would try to discuss our relationship but she wanted out of it.

It was hard on my mother because she loves all her girls but it was difficult to handle when Susan put me down and wouldn't talk.  My mom never wanted us to fight or miss out on a relationship. Thankfully, Susan did go talk to a friend of the family about her feelings towards me when she was in her early 20’s.  It’s really hard for her to open up to anyone and I’m really happy that she talked to someone about her feelings.  I think it helped because now we are closer to each other. Now, if I need either of my sisters, they’re there for me.

Even supportive parents need reminders

My parents are a large part of my life. I can't imagine where I would be without their support, advocacy, and love. They always ensured that I had the same opportunities as my sisters and they never let me use CP as an excuse for my bad behaviour. I want to thank them for the way they raised my sisters and me. They learned early in my life that they would have to fight for what they wanted for me and they were never going to give up, no matter what the so-called experts had to say. I am a lucky lady to have such wonderful parents who let me be my own person, and not just a little girl with CP.  They encouraged me to be independent and helped me to set my own limits.

However, there were still times when I had to prove my independence. While growing up, my parents would help me bathe until I could do it all on my own. In my early teens, they insisted that someone else had to be in the house when I was bathing; they were apprehensive about what could go wrong. One time, I was thirteen and on my own for a couple of hours. The idea of taking a bath was stuck in my head and I wanted to see if I could do it without anyone home.

I ran the water, added bubble bath, sat in the bath, and washed my hair with shampoo and conditioner. I put shampoo on the edge of the bathtub and then moved my head along it. Once it was on my head, I rubbed it in with my hand, then I washed it out. I started draining the bath, got out, dried off, and put on a new set of clothes. I was debating whether I should tell my parents what I had done or not when my mom arrived home. It didn't take her very long to notice I was wearing different clothes. I decided to tell her the truth so I could see her reaction. She was upset that I broke the rule, but I needed to show her that I could this on my own and nothing bad would happen. After that, my parents let me have baths my way, even if someone wasn’t in the house. It made me feel like a normal girl and I like doing things on my own.

In laughter and in hard times, my parents are my advocates and my friends. My mom is like my best friend; I can talk to her about anything. My conversations with my dad revolve around money, home, and mechanical problems.  Among other things, my parents taught me to be honest, to “speak out and stand your ground”.  They believed you should “work hard at what you do”. What I appreciated the most was that they treated me the same as my sisters and not like a daughter with a disability.

When people look at me, what do they think?

When people look at me, do they think that I'm not able to have a life for myself because I have a disability? Do they think that I don't understand how life works in the big world? That's why when I hear the word "no," it makes me feel like I have to show people that I am a normal person like anyone else. I want to show everyone that I am not sitting around, feeling sorry for myself. Sometimes I do wish that I didn't have CP, but I can't do anything about it. I hope this book will help people overcome the barrier and begin understanding people with disabilities.

When I was born, the doctors said I was too small and likely wouldn’t survive.  If I did survive, they said I would never learn much. I would always need specialized care and I would never be independent.  Walking was out of the question, and there was no guarantee I would survive long enough to try.  Of course, falling in love, working, playing, and making life long friends could only happen in my parents' imagination.  Dreams and goals were also out of the question; the doctors assured my family that my brain was too small and would never have the capacity for such abstract thought.  Even recognizing members of my family would be beyond my abilities.  At seven months old they said I had cerebral palsy (CP), damage to my brain, and quadriplegia affecting all four limbs. Some people use the word "gimped" to describe me; to them, it is synonymous with "stupid".  I hear a lot of harsh words: retard, handicapped, slow, useless, and every other name imaginable. As I grew, I learned that despite those labels, I was like anyone else who had a dream or a goal.

Having a disability does not define who I am in this world. Who I am is a determined woman, a family member, a graphic designer, and a writer. I have dreams and goals like anyone else. Yes, I've had to adapt to my circumstances but I can do the same things as many of you can, just in a different way.  My disability doesn’t hold me back from what I want out of life. So whenever I hear someone tell me, "You can't do that because of your disability," it motivates me to show everyone that I can.

I believe my life has little to do with having cerebral palsy.  On the other hand, it has everything to do with hope, strength of character, morality, and happiness.  I have accomplished many different physical things in my life that were not anticipated, such as moving from my knees to standing, completing the manoeuvre on the toilet, and driving a wheelchair.  The steps involved are similar to a child first learning to walk. For me, it was a natural progression.