Personal Reflection

Who I am: My name is Shawna Mattinson, and I have cerebral palsy. I am a writer blogger, and I write about my feelings and thoughts on what is on my mind. And what matters most to me, and I stress that I write letters to the mayors and the prime ministers of Alberta to get my voice heard. And also I have written a couple of short stories regarding someone who has a disability. Every so often I think about having the confidence of sending them away and seeing if I could find someone who wants to help me  publish them, but I don’t feel confident enough in my ability in my writing. A couple of years ago my friend and I went to watch a play, and this was put on by a young woman about her life and her family. It was so powerful and inspiring, and I have thought about the play a lot these past weeks. So I did more writing on my life, and I did a part of my life that  was a bit difficult for me because I was ashamed of myself, but I thought that I had to be more creative and honest with my writing. So I thought about it, and then I just opened up my iPad and started typing what was on my mind, and I was being more open and honest. 

Being honest, I am not convinced that my writing is good or honest. There is a guy who was blind, and he died a few years ago, and he was a blogger. Every time I read his blog, I find I can relate to him, and I believe he was an excellent writer. 

When I listen to music there are some songs that I really like and they have some powerful lyrics. Then I think of sitting down and writing something into lyrics but I don’t think of it like that I don’t have the talent for that. But I wrote a poem about my life living in a wheelchair. I wonder if I stayed in the normal classroom would I have more knowledge in my mind. Would I be able to go to college or university and get a degree in something that I could do in my life. I know that I don’t have the knowledge like some other people who have a disability. 

I just wonder what it would be like if I didn’t have a disability. Don’t get me wrong I love my life and I’m so lucky of what I got to do with my life. Here are my thoughts and feelings about having cerebral palsy, and I will be truly honest with my thoughts and feelings on this matter. A part of having a disability is sucking, and every so often I think about my life without having a disability. Don’t get me wrong, I love my life, and I am grateful for everything that I can do, like travel and get to see other places around the world. Like Japan, Mexico, Hawaii, Australia, and New Zealand, I jumped off the Sky Tower in Auckland. I have travelled to different countries, and it was wonderful to experience, but it’s not easy for someone who has a disability like me. 

Sometimes I want to go to get my high school diploma because I only really got a modified diploma when I graduated from high school in 1999. A part of me wanted to get it because I wanted to go to university and get a degree in psychology. But I am not sure if I can do that work because I feel stupid in my head I feel like I don’t have the knowledge to do this. I also feel that I should just keep working on my writing and see if I can be a playwright or screenwriter.

Sometimes I just want to put my work on my blog and see if anyone knows of anyone who is interested in publishing my work. But on the other hand I know that I am not a  good enough writer yet  to get someone who wants to read my works.   

Sometimes I imagine that I am Shawna’s Mattinson without having a disability but I do have a disability. But my disability does not define who I am or what I want in my life!

My trip to Japan 🇯🇵

Last year in September I went on a 53-day cruise to Japan with my best friend and some of her friends and it was amazing but before we left I didn’t want to go there. Japan wasn’t on my list of places to go and I didn’t know how accessible it would be. I got around the cruise ship on my own with my little electric wheelchair so I can be independent. Sometimes I just went on the back deck and just sat there thinking about life 

The cruise ship was accessible; my friend got a wheelchair friendly room for us, but it wasn’t easy for us because it felt so small for us and I had two wheelchairs. So we had parked my wheelchairs in the washroom. It was a tight fit. if one of us needed the washroom then the other one had to stay in bed to be out of the way. We also needed to move the wheelchairs into the room before using the washroom. It was a really painful situation to live in that room for 53 days. We started in Alaska and then made our way to Japan. Our room got really uncomfortable to sleep in, and something was making noise in the middle of the night, so we went to the front desk to check if we could get another room. Then they said that they would have to check if we could get a new room. They allowed us to sleep in an available interior cabin ( no window) and we kept most of our belongings in the original room. This one felt more spacious than the original room. Aside from having a large door, I didn’t find the first room very accessible at all. 

Our room was on the first floor and it was the first one going down the narrow hallway and I had to park sideways to use the keycard. It was very difficult for me to get into our cabin because when the door opened I had like a minute of getting in the room and then the door will shut. But for me I took my other electric wheelchair and it kind of has a mind of its own. l get the wheels turned the right way to get into the room before the door will shut on me. But it was not easy for me because my hand is not working like a normal person’s hand. It usually took me a few tries to get the key into the hole before I got it. Sometimes when I struggled people walking by would ask if I wanted some help and it was so nice.  

Sometimes when I wheeled around on the ship or played cards with my friend and her friends there were some people that came up to me and gave me a hug without asking. Or they touched me and said you are so adorable and I would love to say “fuck off you don’t know me and I don’t want you coming into my space. How would you feel if I walked up to you give you a hug without asking you first? I bet you would feel uncomfortable and you would tell me “what are you doing? “ Or “Excuse me, this is my space.” I know I have a disability but I’m not a fucking dog that you can come up to and do whatever you want and just walk away.  That makes me so mad and angry and I just wanted to stand up and say something but I didn’t want to be rude and it was my holiday. 

Every day that we were on land we were on a tour of the city and it was not easy for me to get on the bus and off the bus and I had my best friend to help me. Sometimes I just sat on the bus and let her get off and look around and take pictures. I don’t like that I can’t get up and go and explore Japan.  Getting up on to the bus I held on to the railing and I walked up the stairs and if I had to stop my friend was there behind me if I needed help with anything. We were in the front row and that was helpful. I needed to leave lots of time to get on and off the bus. And then we waited until the people got off but then when I decided to get off some places like we were going to be for a hour or two then the other people had to wait until I get off because if not then we would not have known where we would be going because we had a someone who showed us around.  

 

Some nights we went to the Rolling Stone Lounge to listen to a band. There was a band who played all the kinds of songs.  They played every night and they had two shows one on at 6 to 8 and the other one from 8 to 10. We went at 8 because we had dinner at 5:15 and it we get out of the dining room around 7:30 and then we go to the show. It is takes me about a little bit longer to eat because I need someone to feed me because I don’t have a hands mobility. Sometimes when I go out for dinner with family and friends I am ashamed of eating out in public because I eat with my mouth open. I know it is not easy to eat in public with family and friends and I don’t want to make them uncomfortable with me. I know it’s not my fault but it’s not easy to go out with them because how I feel when I see other people with their intentions.

I love to cruise because it lets me travel around the world but it’s not easy for someone who has a disability like me. I did a few cruise and when I went on my first cruise to Alaska with my best friend and her brother for 7 days. His wife and him had been cruising for a while and they were going on a cruise for 36 days to New Zealand and around Australia and then go to Vancouver. My friend and I wanted to go with them so her brother told us that we wanted to go with them then we tried cruising to see if we would like it. 

So we went to Alaska and we shared a room with my friend brother and it was a regular room and the door to the room wasn’t bigger to get my regular wheelchair to get through. And the bathroom was a regular room with two single beds and a pulled out couch and a bathroom which a step up to use the bathroom and it was hard to move around in it. So my friend and I had the beds and her brother was on the couch. I had to go get on my knees to get around the room but when we were out for the day I had to go into the hallway to get into my wheelchair. We didn’t get an accessibility room because it was only 7 days. At the time I was able had mobility and could walk with help. But now it’s not easy for me to get down on my knees and cross around after having a mini stroke 9 years. 

I love to cruise and I will keep on cruising for as  long as I can. But I know that my next trip is going to be last cruise and it will be so special to me because it will be with my best friend, to celebrate our 30 year friendship anniversary. My next cruise is going to be in the next three years around New Zealand and Australia. 

Advocating with Government Officials

 Today I met with Alexandra Preddy, Team Lead, Calgary Transit Access to discuss the problems I have my favourite people in the whole world - Access Calgary!

I emailed a few government officials last week to see if we could discuss some of the challenges I face with Access on the daily. Alex was one of the representatives that got back to me. It was good for me to talk with someone face-to-face. We discussed wait times, cancellations, penalties, more accessible ways to give feedback, and joining a committee to advocate farther.

I feel like she listened to me and that she understands my frustration with Access. She also appreciated my feedback, which is refreshing. These are a few takeaways from our conversation:

Alex is going to confirm that I don’t have penalties for cancelling Access after they delayed my pickup last week. She is also going to look into changing landmark times so that everyone is able to schedule their pickup with enough time to get where they need to be. Alex confirmed there isn’t a strict dress code for Access but drivers like to make sure we have enough clothing in case there is an issue with the bus. When I asked about using the names of locations online instead of just the address, she said it wasnt connected to Google but that I can add my frequent locations to “favourites” online. 

Now it is a wait game!

Do you ever have to look at your life and say: what if?

For someone like me who is in a wheelchair I don’t like winter because I can’t get around in the snow. Every Monday after I work out I go for coffee at Waves and it is a 5 minute walk from the gym. I wheel over and they clean the path, but the last 100 meters from the high school to the strip mall has not been cleaned at all. Initially, it was too snowy and by now, several weeks later, it is too icy, so I have to wheel on the road, risking my safety. I thought the city was supposed to clean all sidewalks. If this was in front of your house, you would get a fine. But I guess if it is a public sidewalk, they can conveniently ignore it.

Hey, I made it and am drinking my mocha as we speak, since I never give up and I am still alive and kicking! So now I am going to file a complaint to the city next! Hallelujah! Merry Christmas everyone!

How do you know right from wrong?

How do you know if you are talking to an impostor on line? You don’t.

Maybe I don’t like to talk to people on line. It’s scary.

Sometimes you receive a friend request from someone you don’t know. You check and find out they are already friends with some of your Facebook friends, so you accept. You have some friendly chats, and after a while the sob stories begin. They want you to feel their pain and they want to you to say: Oh I feel so sorry for you, how can I help you? And then of course they want you to send them money. And that’s where I say: Fuck off! get out of my life! And then they come back with: you don’t care for me and if you would care, you would help me! And I will say that in a couple of months I have gotten to know them that they are sitting somewhere in Timbuktu and are lying shit.

It is even more of a trap for people with disabilities.

For example, say that I was talking to a guy on online and he started talking about how he is so lucky to meet me. I tell him that I have a disability and I when I talk, it sounds like I’m fucking drunk. He thinks that is a sign that I am stupid, so he thinks it will be easy to take advantage of me and scam me out of some cash. Come on, who is the stupid one here?!

My next adventure

The thought of having a disability is so hard on my heart! I have been wondering what I should do for my next adventure. I am thinking of another swim race. I found this interesting race on line: the Midmar Mile in South Africa, the world largest open water swimming event. Every year up to 14,000 swimmers descend on Midmar dam to swim 1 mile from shore to shore. Tomorrow I am going back to swimming for the first time in over a month. I had to overcome the minor hurdle of a broken hand first! Every time I am in the water I feel so free and it feels like I don’t have any disability for that time being. I am very grateful I am able to get out of my wheelchair to swim. Every time I am in the water I feel free like a dolphin. I no longer feel any pain and all my worries wash away. If I decide to do this swim I want to do it on my 45th birthday. It would be a big goal! 

Accessibility, Transportation, and the House of Commons!

As some of you may know, I have to take Access Calgary Transit to get to where I want to go on a day-to-day basis. With that being said, I’ve had so many frustrating experiences lately that make me question the existence of their services in Calgary. Sometimes it feels like, instead of improving or bridging the gaps for accessibility, they are making accessibility that much harder and removing the space for someone else to provide the same services, at a better level to actual meet needs

I want to specifically outline a few recent incidents that have occurred, with one of the most frustrating ones being on October 25, 2023. My experience waiting for ACCESS pickup at the Core Shopping Centre left me stuck waiting for over 2 hours, and I believe it's crucial to bring this matter to the attention of the government as this is a common, not rare nor secluded experience that many folks using Access face every single day. 

With that being said, I am hoping to take this all the way to the government of Canada, and I’m hoping to speak in the House of Commons to have my voice heard. From my understanding, Access is a program offered by Calgary Transit to improve accessibility, but such programs may not be available across the country in other provinces or territories, or where they do exist, they have procedural issues in operating to their best capacity. This could be minimized with a federally governed and managed, across Canada, accessible transit system. By managing it federally, this would allow for this program to exist in other communities across Canada where accessibility may be an issue that has not been appropriately addressed and allow for better overview, insight and maintenance of policies and procedures to ensure accessible transit is not inadvertently limiting or reducing accessibility. I want to talk to the federal government, about making their own accessible transit nationwide. 

I have reached out to Access to discuss this in the past, with no changes being made and still running into the same problems. I have since escalated this issue to the City of Calgary, the Mayor of Calgary, many Councillors, many Members of Parliament, the Premier of Alberta, the Office of the Advocate for Persons with Disabilities, and the Alberta Human Rights Commission. I have also once again reached out to Access to provide a solution that addresses the policy and procedural issues with Access inadvertently limiting accessibility for persons like myself, but have not yet heard back. 

 

For some context, these are some of the situations that have occurred which are the reason behind my call for change. The first one occurred on October 28, 2023. My scheduled pick-up time was between 3:00 and 3:20, a window that already poses an inconvenience, requiring me to wait for twenty minutes without a confirmed time. I also have been told to arrive at the pickup location ten minutes before or wait ten minutes after as sometimes the driver may arrive early or late without any warning. To add to my frustration, I did not receive a confirmation call that day regarding my pick-up, leaving me uncertain about whether or not ACCESS would arrive as scheduled - this was the second snow day of this Winter. Despite this, I arrived at 2:40 to ensure I was there on time and waiting, and I waited until 3:30 with no sign of the vehicle.

 

During this time, I called ACCESS five times, each time receiving conflicting information. The first call, at 3:15 p.m. was to confirm my ride and ensure someone was on their way, to which I was informed that a call was merely a courtesy, and that the driver was on the way and 5 minutes out. It would be nice to know if you are getting a ride in such a bad snow storm, and raises accessibility issues as well. Following that,  I called back at 3:20 p.m., and I was advised that the driver was already parked outside, which led to a frantic but fruitless search for the ACCESS vehicle, going back and forth from each possible pick up point. When we couldn't locate the driver, at the exact location they advised us he was it, I was promised a callback after an attempt to reach the driver. No callback was received, and subsequent calls led to similar responses. I called back at 3:25 and got the same response, that the driver was outside. I once again frantically searched at every entrance for the ACCESS vehicle, but with no luck. I was then advised that they would try to get ahold of the driver and they placed me on hold. She picked up again and advised that they cannot get ahold of the driver, and will attempt to discuss with a supervisor and call us back. Once again, we received no call. We called back at 3:30 and were advised that the driver had marked us as a no-show, which was not possible as we were there well in advance and kept checking every entrance, and called to confirm multiple times. This call was forwarded to the supervisor and then I was advised that the driver cancelled, and that this is usually likely due to a mechanical issue, but they would look into it and get back to me. I kept receiving conflicting information the entire time, they were even blaming it on me at some points, telling me I was a no show. An urgent pickup request was placed, and I was told to expect the next pick-up between 4:30 and 4:50, which equates to a delay of approximately 1.5 to 2 hours. I ended up being picked up at 5, which was ten minutes later than expected as well, and two hours after my scheduled pick up time. Once again, this was during our first winter storm this year.

 

I was reassured multiple times that this situation would be looked into to figure out what happened and what went wrong, what could be improved on, and so forth. They took our contact information down and it has since been months since this incident, and we have not heard back at all directly from Access regarding what happened and why. We also attempted to send an email to Access directly, but did not receive a response back on our inquiry into contact information for someone who would listen. 

 

Another situation occurred on Saturday November 4, I was heading home on an Access ride after winning my hockey game. My driver for the drop off was driving on my residential street, almost to my drop off location, which was my house, when suddenly he pulled over. I thought he was looking for my house and so I let him know that it’s right over ahead of us. He told me he had received a message on his computer and he needed to go pick someone up. I told him my house is right there but he said no that he missed the pickup and he needs to go there right now. So instead of dropping me off even though I was basically almost home, he made me tag along for the pickup. Why didn’t he drop me off and pick her up and be on his Merry way? Why make it a whole runaround situation for everyone involved including myself, the other passenger, himself, and the ACCESS vehicle and its gas tank? 

Another situation occurred today on January 3, 2024, where I was scheduled to be dropped off to the Westside Recreation Centre for my weekly swim routine. My requested drop off time was 11 a.m., which Access confirmed means that the earliest time I could be dropped off is 10:40 a.m.by their policies and standards. However, I was picked up at 9:48 a.m. and dropped off at my destination at 10:04 a.m., an hour earlier than requested. I was meeting up with someone, and due to the changes in drop off times, I had to wait almost an hour. That speaks to the barriers and accessibility issues of Access in assisting with daily transportation needs for social commitments. 

 

I want to highlight these situation, not because they are all a one off experience that I experienced, but because this is something that has happened and continues to happen to almost everyone who uses Access, and almost all the time. I have been using Access for years, and have consistently had issues. I was on the Access Eligibility Appeal board in the past and have heard many similar stories and experiences, and have also tried to raise my concerns in the past. It seems like there is no one you can talk to, or nothing you can do to face this systemic discrimination against people with disabilities. Which is why I am taking it to the House of Commons, in hopes to spark a bigger conversation on how we can work to fix this, and improve the lives of Canadians with disabilities who require support for transportation to enjoy their lives and livelihood. 

At this point, it should be reevaluated how accessible the service really is, and whether it is inadvertently causing further barriers and inaccessibility for many people using the service who may not have another option for transportation. 

I’ve been reaching out to many levels of government, but now I am hoping to present my idea to the House of Commons to provide them with my unique experiences and worldview, as well as this new idea to help improve accessibility on a Canada wide scale. 

Stay tuned and start watching the House of Commons for maybe a special appearance from your girl.