A Young Lady Who has Cerebral Palsy Has a Dream to Walk:

Hi Everybody, I hope you're all having a good day. I am doing an update on my progress to walking. I know this is not a big deal to you guys, but it is to me. I hate to say it but it took me 34 years to get up and walk. It has been a difficult journey, in fact right now it kind of sucks. My legs are killing me. It feels like my legs are telling me to forget it, "We are done, we've been sitting in a wheelchair for years, we don't want to walk". It's kind of hard for me because when I set my mind to do something, I won't let it go until I get what I want. This is what I want, I want to be happy, I want to push myself and prove to my family I can do it. So it will take me a little bit longer to walk. I hope you guys will stay on the journey with me. 

Have a good day!

The Voice of A Handicapped Girl Who Finally Accepted Who She Is:

I have come to a place in my life where I can accept everything, even the things I don't like. I don't like that my legs don't move the way everyone else's do, or the looks of pity people shoot at me. I maybe don't like everything about how I look, like the pimples on my face. But I know that it's a part of me so I accept it just the same. 

If I had to do my life all over again, I'd do it the same way. Having cerebral palsy has brought a particularly wonderful person into my life. I've known her about 16 years, but I moved in with her about 4 1/2 years ago. We do everything together and I am so lucky to have her in my life! Sometimes I do wish I had someone who I really connected to like that who also had cerebral palsy in my life. I do know other people with cerebral palsy, but we don't really hang out. Sometimes I just want someone who can relate to me on all levels, including living with cerebral palsy. 

I want people to know that I love myself. I love my life. I'm not ashamed of having cerebral palsy. This is my life. I couldn't have asked for better family and friends to be taking this journey with me. My life with CP is a good life. I want to show people that I have a disability but that's not who I am. I am Shawna Mattinson and I am okay being handicapped. 

This Is My Voice About Being Handicapped

I wrote an article about my thoughts and feelings on having cerebral palsy back in August 2011. It was about what life might be like if I did not have cerebral palsy, and if I would want that life. Being honest with myself, I always think about what if my parents had three normal daughters. Would I be the same person I am today? Probably not. I don't know what my life would be like and I don't want to think that way. I have a good life and I'm so grateful for my family and friends. On the other hand when I see someone in a wheelchair who has no idea what is going on, I don't want that for me. I hope my family would make the right choice for them and my sisters to let me go because I would have no quality of life.

But right now in my life I feel like my disability is helping me to accomplish what I want. I know it might sound crazy that I feel like my disability is an asset to me. But it's true, it's part of my identity. With this condition I live a more powerful story that I can share with others. I hope my story can help others to overcome obstacles in their own life. My own struggle has made me a more compassionate person. But don't pity me! I have done a lot, I'm an accomplished person in my life. I wrote a book about living with cerebral palsy, I went on a 36 day cruise with my best friend, I jumped off the Sky Tower in Auckland NZ.

But it's not all rainbows and daisies, there are definitely some drawbacks to being disabled... When I go out with family or friends, people treat me like a baby. I don't like that because I am a grown woman. They only see my physical disability and they think that I have no idea what's going on. Often times people won't ask me what I want, they ask whoever is with me instead. It kind of sucks having a disability. Some things are hard for me, and it takes me a little bit longer to get stuff done. When someone tells me NO, I don't even understand the word. When something comes my way, I always push through. Or when I talk to people I have to say it over and over because I'm difficult to understand. Relationships have always been difficult for me, even within my own family. I feel like my nieces and nephew don't really want someone like me for an Aunty. It's not their fault and I know they love me for me and I love them too, but it's definitely a different dynamic.

This is who I am, I am on a path on my own. I want to help people understand who I am and what I want out of life. This is also greater than me, the little girl inside of me is finally taking her footsteps to walking. I am not alone, I have tribe of people behind me.

Update: On the Weekly Videos

I am sure many of you have been following along on this path that I'm taking, I have enjoyed sharing the journey with you. I am doing it for myself, the disabled community, and for people left less abled due to tragic life events. Ultimately, I want to bring some hope to people. So I decided to make a video about my progress to show you guys and everyone else what I am capable of doing. I can do everything with Cerebral Palsy! But I'm not putting up a video every week anymore, I am putting up a video every month. I want to show more of my big picture progress, rather than the little bits everyday. 

On my Way to Walk Video 2

CTV News W5 Story:

There was a show on W5 a couple of weeks ago, it was on a family who has kids, triplets in fact and they all have cerebral palsy. The three kids have been through a lot. Brody is the most severely affected, he can't speak and has had multiple surgeries, including heart surgery at 6 weeks. His sister Taylor also had heart surgery at 6 weeks. His sister Taylor also had heart surgery at 6 weeks. Their brother Cole was born deaf however, since receiving a cochlear implant he is slowly starting to talk. Their parents have a hard time with everything in fact, the stress of this situation has caused them to divorce. They have had to make countless difficult decisions of what is best for the family. Often times the surgeries the kids go through are potentially fatal. They have to live life day by day and sometimes hour by hour.

My thoughts about this... I am thinking about the family because it's hard to have 3 little kids who all have cerebral palsy. When I think of my family, they have it so good because they only have one child with cerebral palsy. My heart goes out to the parents because they have kids who will never grow up and get a car, or go to college, or have kids of their own. If I was one of those kids, I would want my family to do the right thing for me and for them. I take my hat off to the parents of these triplets. They have sacrificed their own lives to care for their children. If I were in their shoes, I'd want to do the same. 

The important thing to realize is that cerebral palsy is a very individual condition, no two people are the same. No two families are the same either. What is right for one situation is not necessarily right for another. I think that in this family's situation it was in the parents best interest, despite all the sacrifices they made to do their best to raise those children. However, in the case of the family in the Dr. Phil story below, I believe it would be the best choice for those children with disabilities to have a doctor assisted suicide. They have no quality of life and no awareness where they are or who else is there. If I was in their shoes I would want my parents to let me go, and get on with their lives. I know they love me but if I was a vegetable then I would want them to let me go. 

Standing up on my Own

My progress of walking

I walked for forty minutes today and that is my longest that I've walked so far. My legs are killing me, but I will never give up on my dream!!! 

Walking on the treadmill, October 2015

Disability Services Across Alberta

Good day everybody,

I hope everybody had a good summer. I am writing a blog on the province of Alberta and all the services that they provide to people who have disabilities. I live in Calgary, but when I was growing up, I lived in a little town called Airdrie 15 minutes away from Calgary. They didn’t have any programs for me when I was growing up. When I was 18, I moved out to get more opportunities in my life. That’s why I wanted to research the cities around Alberta to see what they’re offering. Note that this is not an exhaustive list.

Airdrie: Airdrie is outside of Calgary and it is a city now. They don’t have anything there for people who have disabilities.

Olds: Olds has some programs for people with disabilities. They are…

Accredited Supports to the Community (ASC)

Padnoma Support Services

Red Deer: Red Deer has some programs and they are…

EPSS (Employment Placement and Support Services)

Learning Disabilities Red Deer

Cosmos group of companies

Aspire

Living Independently For Equality

Grande Prairie: Grande Prairie has some programs for people who have disabilities. They have a lot of community service organizations and employment.

Disabled Transportation Society (DTS)

Accredited Supportive Living Services

Canadian Mental Health Association

Community Life Acceptance Independence Resources (CLAIR)

Signature Support Services

Medicine Hat: Medicine Hat has some programs for people who have disabilities. There is also an Advisory Committee on Disability Issues with the city of Medicine Hat.

REDI Enterprises Society

Next Step

There are also a lot of little cities and little towns all over Alberta, and I will be researching them in the near future, and make comparisons for what’s out there for people who have a disability. The next city I will research is Lethbridge.

Article

Last week a friend of mine brought to my attention a posting on Facebook (see below). It was put up by a young man with a disability who was upset that he was not being asked back to a volunteer position he had done in previous years. The non-profit organization that he was volunteering with had changed their policies and procedures about who they needed as volunteers. Due to this young man's disability he was no longer qualified. My friend, who previously worked in a non-profit organization, thought this posed an interesting discussion because I have cerebral palsy, am in a wheelchair and I also have difficulty speaking so others can understand me. She asked me if I thought it was fair that the young man was being denied the opportunity to return to the position. I would not be qualified for this position based on the new standards they have set forth. Should he be offered the position again because he has a disability? If he didn't have a disability and the organization changed their practice and he couldn't perform the tasks, would he be asked back anyway? Do organizations have the right to change their procedures and grow? My friend told me about a situation where she was working for an organization that was based on health and research for a disease. The Volunteer Manager who held the position previous to her had hired some volunteers with disabilities. At the time it was a win - win because the volunteers were able to perform the tasks required. Eventually the organization grew and expanded and the previous volunteers were no longer qualified. Soon the volunteers were dropping by to have coffee, socialize and play on the computers. There are organizations specifically set up to accommodate these volunteers with their day programs so my friend had to terminate these volunteers. Are people with disabilities looking for equality or charity? All the comments that were put up on this young man's facebook took the position that the organization was wrong and they were all going to boycott. This was even reposted on a University of Calgary facebook page for Disability Studies with the comment "Can you believe this is happening in the Province of Alberta of all places!" Why wouldn't this happen in Alberta? Why wouldn't this happen anywhere? Things change. As a person with a disability I am looking for equality. I think if I am not qualified to do the job or task, I don't get the position. If I can do the job and I am discriminated against because of my disability that is a different story. This doesn't seem to be the case in this particular instance. I saw a YouTube video with Stella Young, she was a young woman with a disability in Australia and she inspired me and I would like to share her thoughts with you today. "I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people". As outsiders looking in at this situation, what are your thoughts on the following posting?

FACEBOOK POSTING OF JULY 4

It upsets me that I cannot volunteer at the ###### this year as I have many years ago as a friendraiser greeting people. I enjoyed doing it and now according to this letter, not even addressed to me but to my primary support person, I do not belong. I can't believe they think they will make things better by inviting me to a special needs party. Why can I not be a citizen and participate like others? This is the letter they send to me:

As a not-for-profit registered charity, ###################### values the support of the community and endeavors to find meaningful ways to interact and involve members of diverse community populations in our volunteer ranks. Over the years, our needs for volunteer support during the ########l have changed and evolved, and due to the nature of the current demands on our ######, we are now obligated to engage only those volunteers whose skill sets match those of the job. For instance, all volunteers on the ############### must now be able to actively communicate and engage with ###############, both asking for donations and explaining how the ######### benefits from this support. We realize that opportunities for individuals who may have volunteered in the past without these skill sets may be impacted but we must meet the needs of our organization.

We will not be able to accept your client, ######### application to volunteer this year.

In order to continue positive interaction with the community and give back in a way which is possible under our mission and mandate, the ############# will host its first ever Community Day at the ############. This day, Saturday, August 15, will be designed as a day to ‘welcome’ all members of the community to the ########## and will feature a non-profit ‘tradeshow’ at the ATB Community Patio from 1 p.m. to 4:00 p.m. This event will feature 10-12 not-for-profit organizations sharing information on who they are and how they support the community with ######## patrons and will allow ############# to get a glimpse of the larger not-for-profit community of which we are part. The day will be about ‘giving back’ and being ‘inclusive’ and we welcome all to attend.

As special needs volunteers are one of the community sectors impacted by our volunteer direction, we are inviting you/your client to attend Community Day to experience the ######## from a broader community perspective. Special effort will be made to welcome you as a guest, and when you check in at the Community Day event at the ATB Financial Patio, we will present you with a small token of our appreciation for coming out to show your support. Please find the invitation attached.

Thank you for your support and interest in the ##############################

Kindest Regards,

#############

A girl who has a dream to be able walk!

I am writing this letter to myself to be able to go back and read it in several years.  The fact is that I have Cerebral Palsy, but that does not define what I want out of life.  I am not the first person with a disability to make a life change.  To be a girl with a disability but who can make a difference in the world for those that wish they could.  This is my dream, that I will get up from my wheelchair and walk on my own one day.  From an early age, I watched my two sisters walk around and have a normal life, so for me to be able to walk and have a normal life like my sisters is a dream of mine.  If I can work on my legs to make them stronger,I can walk on my own and don't have to ask for help. When I go out with family and friends I have to use my wheelchair and I need help with some things, like eating, brushing my teeth, and doing my hair.

At 34 years old,I have done a lot of things in my life. I have written a book aboutmy life living with a disability. I went to lots of places all over the world.  I am a very lucky girl to have done a lot of stuff in my life and I am so grateful to have a lovely family. But I feel like there is something missing in my life. I don't know why I feel this way, but the only thing that I can think of is having two legs to walk down the road as something that I’d have in my life. The fact is that I can get it if I work on my body and make my legs strong enough for me to get up from my wheelchair.

Walking, June 2015

"Wheels Are Turning": An idea for a magazine

A long long time ago, I had an idea and now I am working on it: an online magazine! I used to call it 'Wheels About', but I am using that name for this blog. I changed the name to 'Wheels Are Turning'. The magazine that I have in mind is focused on people who have disabilities and their life stories as a way to advocate for our autonomy. My goal is to make a few issues by myself and then see how well they do, and then I would like to get people to write their life stories or about someone they know. I would like to do it in Calgary first and then expand across Alberta, and then Canada, and then the world.

If you would like to help with the magazine, you can email me at sdmattinson@gmail.com. I'd really appreciate it!

If you have any ideas or suggestions of what you'd like to see in the magazine, please leave comments!

If you had the choice to change your life – would you?

I wrote a blog post a couple years ago on my thoughts and feelings about being handicapped. If I could wave a magic wand and have my disability erased how would my life be different? Who would I be without a disability? I can’t answer that because I only know who I am today. I am Shawna Mattinson and I have a disability. I’ve done a lot of things during my life, and that’s affected who I am today. I am a writer, a blogger, a web designer, a friend, a sister, and a daughter. Would these be different if I didn’t have a disability?

I am a normal person inside, and I have dreams and goals like everybody else. Yes, you can see my disability, but that doesn’t define who I am as a person. I saw this on my holiday because people were extremely friendly with me.  Is it because they are friendly or is it because of my disability? There were servers who would talk to me like I was a baby and couldn’t think for myself.  I wish people wouldn’t assume I am stupid. If I could, I would like to see people not make any assumptions. People who have a disability like me are looked down on because we don't act the same way.

Everybody has a disability. There are physical disabilities but also nonphysical ones like anger management issues, drug addiction, laziness, mental illness, social anxiety, lack of self-esteem, and others. In our lives, we need challenges to prove that we can overcome them.

Sometimes, we can’t overcome the challenges in our life by ourselves. We all need help in some way, like doing a paper for school, or helping someone move out of their parents’ house for the first time, or buying a car, or getting your own house. If we don’t have family or friends to count on, who can we count on?

Just because we need help, that doesn’t mean that we don’t have our own independence, like moving out for the first time. When I was younger, I always told my parents I’d move out when I was 18. My mom didn’t know if that was a good idea for me, but I proved her wrong. For others with physical disabilities, they’re not given that chance. They’re kept at home because their caregivers don’t know if they can handle the real world.

How do you respond to people who have a disability? The answer is, if you have someone who has a disability in your life, the disability doesn’t matter. For me, my family and friends only see me, Shawna.  I really like that.  I love the way they see me as a normal but bright girl with a sense of humour and many capabilities.  I feel sad for the people with disabilities whose families don’t let them spread their wings and keep them home.

I wish that everybody in the world could see through a disability and see what’s inside not just what is in on the outside.  This will never happen but it poses an interesting question of whether or not the grass is truly greener on the other side. 

Hawaii, and the end of the cruise

In Nawiliwili, we went on the helicopter ride. After that, we went on another excursion called “Tubing the Ditch.” I also got a video from the helicopter ride.

The helicopter ride

Tubing in the ditch

Then in Honolulu, in the morning, we walked around. We caught the bus in the morning, he dropped us off at Wal-mart. We walked around in there, and then we went on the other side and then there was a Starbucks and we went online and then we went into two stores, and then Laura and I went to the beach at 12:30 and we left there at 6:30 to go back to the ship.

All in all, it was an excellent cruise, and I would do it again.

Pago Pago

In Pago Pago, we walked around and it was very very hot out. You couldn't even stand it. We walked to the library; it was a fifteen minute walk. You had to pay $5 to get online and it wasn't worth it, but I paid the $5 because I hadn't talked to my family for a while now. We walked back to the ship and walked all the way to McDonald's to get a cold drink. On the way back, there were a couple of kiosks where I bought a couple of T-shirts. Then we went back on the ship.

Hanging out at the pool

Suva

In Suva, we went on an excursion for the whole day. It was a boat ride, and then we went to a waterfall but you had to walk. A guy who was taking us on the boat, he carried me a part of the way, but I couldn't get up to the waterfall because it was so hot out and I was too heavy, and they don't wear shoes in Fiji, so it was hard for the guy. There was a place where I could sit and everybody else went up to the waterfall and they could swim in it. We got back to the boat and went back to have lunch. Before we had lunch, they had a ceremony to welcome us into their homes, and we had Kava. When I had Kava, oh my god, it was the worst drink I ever had. And then we had lunch and then they had a little market outside. We went back to the ship after that.

The longboat ride

The ceremony