For readers…

Thank you for letting me share my life story with you. I hope you enjoyed reading about my life with a disability and what I’ve overcome. I hope you share it with your family and friends!

If you’re new to this site, please know that this is the end of the book. You can start reading it in reverse order.

If you're looking for more of my writings, please check out my other blog here: http://wheelsabout.blogspot.ca

What I say for the rest of my life

I am happy to share all the happiness, struggles, losses, fears, successes, and my decision not to associate my disability with my individual identity. There are times when I hate my wheelchair. If I want to go out, I am unable to do it spontaneously because I have no way of getting there; I have to book an accessible bus first. I can't walk by myself, but I can get into a car with help. I can't tie my shoelaces, but I can dress myself. I can't open my lunch container, but I can use a fork. I can't use a mouse, but I can use a joystick or touch-pad.

I know in my heart that I am a normal girl, but when I meet people they only see a girl who has a disability. And you know what? That hurts my feelings. They can't see beyond my disability and see what I am capable of.  Sometimes they talk about me to family and friends as if I can't understand them, which makes me mad and hurts my feelings.

For most of my life, people have stared at me and I do not like it.  It is rude and makes me feel uncomfortable.  People talk to me as if I am an infant, but I am an adult.  I can do everything that they can do, but I do it in different ways.  It may take me more time, but I always discover a way to accomplish the task at hand.

I like working with computers because they help me communicate.  It is hard for me to communicate with someone new since we are not used to how the other person speaks, but computers compliment face-to-face interactions. Computers have been helping me record my thoughts and feelings since I was very young. Through my writing, I can get my message across with more meaning and clarity.

I have a blog (‘Wheels About’) where I can write about some of the feelings that I have about living with a disability.  One of my blogs that I did it was about a show that Dr. Phil did.  It was about a mom who had two kids who are in their 40’s and have a syndrome called Sanfillipo Syndrome which left them in a vegetative state. The mom wanted to end their lives.

It opened my eyes a lot and I am very lucky that I have two parents who love me and want me to be happy.  They don’t see me with a disability; they see me as their daughter.  It makes me happy, but if my CP was bad enough that I had no life and had no idea what was going on, I would want my parents to let me go because I wouldn’t want them to put me in a institution where I have no freedom.  If I had no idea what day it was or had no awareness of myself, then I would want to die.  I know in my heart that my family would come and see me but it wouldn’t be right for everyone. 

Looking back at where I came from, I am so lucky to have parents as great as my mom and dad. They didn’t let my handicap rule their lives, thereby teaching me that I shouldn’t let it rule my life either.  It made me a better person.  My twin sister and I are closer now than when we were children, and I love that, and am so happy for her and what she made out of her life now.  She’s getting married and she has two lovely kids that I adore, but I wonder about what would have happened if I were her and she was me.  Would I be the same way as her or would I love her like a sister and have not be ashamed of her having CP.

On the other hand, I wonder what would happen if we both came out with no disability.  What would have happened with my life?  Where would I be now?  Who would I be?  Would I be married with kids?  Would I live in Calgary or Airdrie?  Would me, Susan and Charmaine be closer?  These are questions that I have in the back of my mind.  I don’t have answers to them but I know in my heart it doesn’t make any difference because I am so happy with my life now.   I hope one day in the future that I can do everything that I hope and dream.

I look at my sisters lives and I want that for myself. I always look up to them and what they do with their lives. Right now, I have my family and all my friends and I'm happy. If I never find the love my sisters have with their husbands, I have enough already from my family and my friends and that's what keeps me going every day.

I am putting wheels in motion. I want to make everyone understand that people with disabilities can often do more than what their families, friends, and support workers think they can do. We all have dreams and goals that are bigger than buses, schools, and attitudes. I want to show the world that I can achieve anything I put my mind to. I have been told throughout my life about all of the things that I will not be able to do.

I live my life to disprove stereotypes.  I treat everyone with respect and I want people to treat me the same way, regardless of my disability.  I wrote this book so that one day, my friends and I in wheelchairs may be judged on our souls, hearts, and spirits, rather than our medical diagnoses. I don't see myself as disabled.  I see myself as a regular person like you and want people to see me that way.

Thank you to everyone who has believed in me, allowed me to conquer my challenges, and live my dreams.

I can only hope that my book will help end discrimination.

I am not disabled.

I am not handicapped.

I am Shawna Mattinson. 

My dream of having ‘Cups on Wheels’

My other long-term goal is to create an accessible coffee shop. Governments often talk about the importance of policies on accessibility, but the reality is that issues on public transportation, student funding, and even attitudes pose a huge everyday challenge. As a person in a wheelchair, I hear about inclusive policies all the time. I know that most, if not all, places are technically accessible. However, when I come across sidewalks that I cannot get down from, or city train cars that I cannot board, or a building in which I have to use the back door, I think the government needs to realize that people with disabilities are often a hidden percentage of what we consider a diverse population. 

I want to open ‘Cup on Wheels’ which would offer drinks and snacks but be completely accessible to everyone.  In British Columbia, we visited a barn that was renovated into a coffee shop.  When we stopped into this family-run business, I discovered that they had an octagon table designed for people in wheelchairs. At most coffee shops, the tables are too small and people with wheelchairs have trouble finding room. It opened my eyes to the need for greater accessibility in my own city.

Although more and more businesses are becoming accessible, there are still barriers.  Doors do not always open automatically.  Tables and chairs that are meant to be close together and cozy are very difficult to navigate through, especially when there is a long line.  I am attempting to change not just the physical layout, but to make it easier to enjoy a cup of coffee and a snack.

There are small ways to make it more accessible: mugs with thicker handles that are easier to hold, straws that can bend, and curved utensils. Counters and tables should be designed to be easier to approach, sit at, and leave. There would be a computer at every table where you could place an order instead of having to go up to the front, and servers would bring your order to you. My goal is not to have a coffee shop that is only for people with disabilities; it is for everyone to enjoy.  

Opening any new business can be hard and there will be obstacles. But life has been hard before and I have overcome obstacles all my life.  Sometimes I'll want to give up on an idea but I never give up in life and I'm not stopping now.

No matter what you want out of your life, don't stop believing in yourself and reaching for your goals. Never stop dreaming.  No one can tell me what I want out of my life.  It will take time and perseverance to reach my goals but I will get there.

People who stare at me everywhere I go and believe I am less capable than another person are the ones I want to prove wrong by writing this book and developing my website. I will do whatever it takes to show that I can do whatever they can do, even though it may happen in different ways. I need to do this because I do not want to waste my life doing something I don't like and don't want to do.

‘Wheels About’ and other dreams for the future

I went to Hawaii 4 years ago with Laura, and we were there for two weeks (my mom and dad came along the last week we were there). In February 2015, Laura and I are going back there for a month.

Then in April, we’re flying to New Zealand. I’m planning to do the SkyJump and SkyWalk before we go on a 36-day cruise back to Vancouver. We’ve been on a cruise before in June when we went to Alaska; it was only 7 days long. I liked it because it was easy for me to get around. One of my goals is to see the world, so it’ll be fun to visit a new country.

Since I was a little girl, I have had the dream of owning my own house. It was a scary, exciting day to move out of our family house and into a group home, especially because I moved out before Susan did!  It felt great to do something before her. After living at home for the first eighteen years of my life, living anywhere else would be an adjustment.  However, this dream didn't start or end with that first moving day. In the future, I still hope to own my own house.

Also, I have two main business ideas in mind and I am working on them, but they are long-term goals.  I thought about an online magazine, and opening a coffee shop.  Before going back to school to earn my diploma in Graphic Design, I participated in a business course through Momentum Employment Development Center to learn the basics of running a small business.  There is a lot to know!

We each had a final project of presenting our business idea to the class and I put together a simple website.  I found a free host site where I entered my project into a template.  I had the basic information about my life, CP, and the magazine description but I wanted to add more!

Every weekend, a friend and I went to a movie so I decided to write a movie review to include in 'Wheels About', a name I thought would be appropriate for my online magazine.  Some friends and I went out for supper and I asked a friend to write a review of the restaurant.  She writes well and was in the restaurant business. I included articles on health and wellness, using inclusive language, and community events and resources. Someone even contributed a cartoon!

Thanks to my efforts with creating a website, a woman contacted me about sharing my life story.  She proposed that I visit the school where she worked as an aide and that I present to a conference of teachers and aides.  I accepted and had a couple of months to prepare.  I created a PowerPoint slideshow about my family and experiences with school.  I enjoyed presenting and I would like to do this again for other schools to increase their awareness.

Trip to Dominican Republic

My parents thought it would be a great idea to take a family holiday to the Dominican Republic in 2006. Charmaine was pregnant with her first daughter and my parents thought it would be fun to have one last trip before our family grew.

It was a great escape from the winter weather.  We stayed in a resort where there were always different activities going on, so we were never bored.  It was easier than the trip to Mexico because the resort was all on one level and easy to navigate.  I only left the resort once for a day tour; my dad and my sisters recommended I stay at the resort where I wouldn't have trouble moving about.  If I return to the Dominican Republic, I would like to stay in a resort again but leave the resort more than once so I can see the city.

The worst part of the entire holiday happened the day we were preparing to leave.  Check out was 11 a.m. but our flight wasn't until midnight.  The resort offered to let us keep our bags in our room (even though we had checked out) and we could lounge about the pool until we left at 9 p.m.

I didn't want to leave our bags in the room because I had a bad feeling that someone would steal them, but my parents assured me it would be fine.  When we went to pick up our suitcases from the room, everyone's suitcase was there except mine! We asked at the hotel but they had no idea where it could be.  At least we were going home that day and I would have clothes to wear when I got home, but I had lost all my souvenirs and gifts!

Trip to Mexico (part 2)

The first night we arrived in Mexico, there was a giant storm! In fact, it destroyed the wall that Laura had sat on earlier that night. Of course, I slept through the whole thing and woke up totally clueless as to what had happened outside!

The storm polluted the ocean water so we could not go to the beach for the first few days. We spent time looking at fascinating old Catholic cathedrals. We also went shopping and I bought gifts for my family. We always had people coming up to us and trying to sell us something. "No thank you," was our usual reply but they didn't always understand what it meant. The same people kept coming back to sell us things. I did buy bracelets from one vendor though.

In the evenings, Laura and I explored the areas around our hotel. The sidewalks were very high above the roads and there were no ramps, which made it difficult for me to get down from and up onto the sidewalks.  And with their driving I didn't want to be on the roads! Luckily I brought my manual wheelchair, making it easier to travel the streets. The beach was a little tricky to travel; I moved if someone tilted my chair back and pushed it on the back two wheels.

I went in the water with everyone. They each held one arm, keeping me between them, to walk me out into the water. Afterwards, it was just Laura and me. She accidentally let go of me for a second, I lost my balance, and ended up with a mouthful of salty water! I spluttered at Laura, "You did that on purpose!" "No, I didn't." "Yeah right."

On the last night, we went out for supper with my family friends at the well-known Senor Frogs.  While we were sitting at our table, there was an old man looking at me.  He kept staring. I pointed him out to Laura; "My gosh Shawna, I can't take you anywhere!" He came over and asked me for a dance.  I declined and he left. He returned later that evening to ask me to marry him.  Once again I declined his offer and we asked him to leave us alone.

I don't enjoy hot spicy food so I wasn't too fond of the local cuisine.  We made up for that at Senor Frogs by ordering some ridiculously tall drinks. As you can imagine, I wasn't feeling too well the next day and spent my time by the pool before flying the four hours home.

We had a blast in Mexico, from going to the beach, touring the city, and trying new foods (some that I would not try again)! It was a great holiday and if I wasn't in a wheelchair, I would go back.  It was hard to get around in a wheelchair even with Laura and my friends there to help me along.  Despite the difficulties, people were happy to accommodate me.  It would be nice to have this level of service in Calgary but this involves much more than inclusive policies; it involves attitude changes.

Sometimes I prefer it when people have a nicer attitude towards me. However, there is a difference between being nice and babying me with niceness. Attitudes towards people with disabilities are like a see-saw; you have to balance treating me like anyone else while acknowledging that I do have a disability that impacts services. It's nice not to wait in a long line, like in the Mexican airport.  I was so happy not to have to wait in line because I hate waiting in line and it was very long.  When we exited the airport, the line had barely moved; those people were there for such a long time! An airport staff member was pushing me while Laura walked behind us with the entire luggage in her hands.  Suddenly he broke out into a run and I looked back to see if she was keeping up; she was sprinting along with one suitcase and two backpacks!