I have a disability, but that's not going to define who I am...

There are a lot of things I can't do, I could make a whole list but I won't get into it. Beyond the things I can't do, I feel like there are a lot of things I feel I don't understand.. Like I lack the mental capacity to understand them. I don't know if it's the real truth, or if it's just my belief? I often feel like I am lacking or less than others. Sometimes for strange reasons like not being in relationship or having my own family. I don't even desire these things at the moment, but it's difficult not to compare myself to others.

 I land on a spectrum of Cerebral Palsy, there are things I'm capable of doing like getting out of my chair and walking. However, there are others with Cerebral Palsy who can obtain degrees and full time jobs and I feel like those things are out of reach for me. This isn't a rant hoping for encouragement or sympathy, I'm just being honest about how I feel. 

The last couple of years have been pretty tough. I felt in limbo and like I wasn't accomplishing a lot. I was knocking on a lot of doors that wouldn't open. I was writing some but I didn't feel passionate about it. My mini stroke left me feeling more disabled and vulnerable, I wondered "would I ever get my independence back"? I relied on people to help me more than I wanted too. Friends, even this period of my life was a gift to me. It opened my eyes, it made me want to live life to the fullest! I wanted to take more chances!! Tomorrow isn't promised so get out and LIVE!!! I need to tell my story. I want it to serve others on their journey. 

No matter what goes on in my life. I am so grateful for who I am and who I'm becoming...

Listen To Life

I went to a play on Thursday night by myself. It was really more of a live experience than a play. You weren't so much watching actors play characters, you were witnessing people share their stories. It got me thinking about life and how every experience is teaching us something.

I've been reflecting on times that I knew something was wrong or "off" but I didn't pay attention. One of those times was when I got taken advantage of on a handibus. I mean I had to get home and it was my only option to get there. But I remember a moment before I even got on that the man looked at me with an unsettling eye. That was my clue, that was my whisper that something bad was about to happen. I am not about to victim blame myself, it was not my fault. But I do want this story to illustrate how subtle these little messages can be. 

Sometimes you're in a relationship and there are small indicators that the other persons heart doesn't quite belong to you. Or maybe you brush off their possessiveness and jealousy as care and protection. Sometimes you feel something in your gut but you choose to shove it down or deny that it exists. It's there for a reason. 

Particularly if you're an individual with a disability, you are required to put a lot of trust in the people around you. Your family, friends, and caregivers. Sometimes we need to be reminded to listen to ourselves. The honest truth, deep in your soul. The one that makes the hairs of your neck standup and gives you bad butterflies in your stomach. 

Always listen to yourself first....

Our Friend on Wheels

“Our Friend with Wheels” is a book about making friends. Watch this amazing kids story that shows you the beauty of friendship. I really hope that my book will help all the kids with disabilities to see that making friends it’s possible.

https://www.youtube.com/watch?v=KUL0P3yZ4EE

CP Day

Dear fellow "CP’s",

Be proud of yourself.

Don’t let other people keep you down.

Find your voice, and USE it.

Dear “regular folks”,

What I wish you would understand about me is that

 yes, I have Cerebral Palsy and I’m not ashamed of it.

 Your pitiful looks and sad eyes have no effect on me.

Dear world, 

I am not disabled and if you don’t like it, get out of my life…

What People Think When They Look at Me

Today my friend and I were on the c-train going downtown. Sitting across from was a young lady, well dressed and likely on her way to a meeting.  She said "Hi' to me with that gooey eyed look in her eyes like when you greet a child. I respectfully said "Hi" back and then continued chatting with my friend... I didn't engage with her further because she kind of rubbed me the wrong way. My friend and I were chatting and laughing (I'm hilarious after all) and she tried to join in laughing with us... Then she said to my friend "She has a great sense of humour"! I don't think she knew I was telling her a really funny story, she just assumed I was "making noises" and laughing. I shot her an unimpressed look when she said that and my friend and I just carried on our conversation.  

Here's the thing, I don't believe she had any bad intentions... she may have thought I was a child, or at least quite young, if she didn't hear/understand my words she may have thought I don't have much cognitive ability. She was trying to be friendly and inclusive, but in a bit of a forced way. She didn't pick up on my dead pan look to her and back off a little. My friend kept asking me questions to demonstrate to her that I am a fully cognitive and aware (adult) person. 

This can be a really delicate situation because you don't want to shame somebody or make them feel bad because they don't understand who you are.  Would it have been better to say to her face that I am a fully functioning adult person? Or just continue demonstrating that with my friend? 

I don't care what people think about me, but don't assume that my disability defines me in this world. 

TOM: ALBERTA

Tikkun Olam is Hebrew for “repairing the world,” and that is our focus in TOM. Our goal is to design and create empowering solutions for challenges faced by individuals living with disabilities and limitations.

 My worker and I came across a “makeathon” event in Calgary this August. It is a pairing of individuals with disabilities with several “makers” i.e.. electricians, engineers, designers, etc. for 72 hours and come up with a prototype at the end of the time to help the individual with a disability. There is a 4 month long creation process beginning this September in which prototypes or apps etc. will be built among teams including 1-2 persons with a  disability and about 6 “makers” (professional creators). 

My worker and I emailed them a couple of weeks ago to receive more information. We were put in contact right away with a project manager named Kathryn. She was unable to meet us in person so she sent two colleagues to meet with us that week. They were very excited to meet me! They thought I would be a great fit for a group that has another person developing an app to assist people who have difficulty speaking. They invited me to join that team if I am interested. 

I am already blown away by the dedication and passion these people have for this project!! 

They encouraged me to keep in touch and to contact them if anymore ideas come to my mind. I feel like this is a good fit for me. I’m really excited!

Please check out their site for more information:
http://kadimadynamics.com/researchgroups/tom/

Trying New Things! (Hope in Despair)

If you've been following my blog for a while, you'll probably remember that around this time last year I had a mild stroke. This news left me shocked and uncertain about my future as I approached my mid thirties. I have a very entrepreneurial spirit. I want to do everything I can as well as I can and push myself to the limits. This has helped me live a very full life and I'm glad I have such a "can do" attitude. However, it can leave me feeling burned out and exhausted from trying to do so much. My stroke was supposedly caused from a cumulative number of falls I've had in my lifetime... But in my eyes, it was a wake up call. I still haven't fully recovered from it. I often lack energy to do much in my day. But that's ok. In fact, I see it as a blessing disguise. I have been forced to rest, and enjoy each moment I have. 

This can sometimes make me feel like I am "behind" in life, or like I should be in a different place by now. Like I should heal faster or something! Western society rewards perpetual business, the only thing that matters is a full schedule. Well, I just can't keep up. Slowly but surely I am becoming comfortable with resting and just being. I am giving up walking for now, my body just can't handle it. But, I'm going to try some new things! I discovered a wheelchair bike and I'd love to try it out! Kickboxing has also recently grabbed my attention, I want to give it a go! I hadn't even thought about these new ideas before I had to slow down. 

So if you are feeling "stuck" or "behind" or "frustrated" with where you're at in life, I hope you are encouraged by this blog. Take time to reconnect with yourself and discover new opportunities from where you are at right now. This season, whatever it looks like for you is a gift... even if it's hard to see it that way right now. Don't lose hope!

This is a poem about my body!!!

Find Your Voice

Hi everybody,

You know that I'm a really open person and I like to advocate for others and help them to improve their lives. I have an idea and I'm really curious what do you think about it. I keep thinking for a couple of weeks what is the best way to help somebody who has a disability and can't express its own ideas very easy. It's hard sometimes to keep repeating yourself, because the other person that you are talking to can't understand you right away. Furthermore, if you have to do this all day long, every day, for the rest of your life, doesn't matter if you are tired or sad, this is even worse. 

So I think that it will be nice if I will create an app about that. The app name is "Find Your Voice". I choose this name because an app like that will help people to open up a conversation without stragelling to express their thoughts. The app will have lots off folders with words, sentences and images. The words categories that I'm thinking to include are: colours, greetings, cloths, food, drinks, music, movies, places, family and friends, transportation, common sentences,  questions and answers,  books, going out, etc.

In the same time, I saw that are some apps already out there about the same subject. I didn't try them, so I don't know how good they are. 
It will be really nice if you, guys, will share your thoughts and help me to decide what to do. Thank you in advance!

Taking Life by the Horns/ my Deepest Desire

I was out for coffee with my friend and she told me she wanted to get away ... but she's being a real chicken about it. She's told me a couple of places she wishes to go,  I just think "Oh my gosh, if I were you I'd be out of here in one hot minute". 

I wonder what I would do if I didn't have a disability... Would I grab life by the horns and never look back? I have family and friends here but I don't have "roots" as in no job, no man, no pet, no kids, I'm a pretty free bird. Sometimes I wish I could go to the airport and just pick a flight somewhere. Wherever I ended up, I would would email my parents to let them where I am... and so they know I'm still alive. haha. 

 Sometimes I want to go all over the world and advocate for individuals with disabilites and write about it on my blog for everyone else to see. I would want my blog to be accessible all around the world. That's my heart's desire. Ultimately, because of my own battles with disabilities I have a connection and understanding with other people with disabilities. I guess I can thank my Cerebral Palsy for my balsy advocate desires. 

The reality is that there are so many fears I have associated with taking a risk like that. For instance, what if I left and something tragic happened to my parents... or another family member. What could I do being so far away from them? Perhaps it's more advantageous to them if I'm gone because then no one has to be responsible for me and my well being... Well, that's not entirely true. Everything that I need help with over here I would still need help with anywhere else in the world. If it wasn't a friend or family member, it would have to be someone else assisting me where I am. Don't get me wrong, I love my family! They are the reason I'm here and I couldn't be who I am without them. But they also have their own lives and I understand that and I'm happy for them! 

This is what's in my heart and this is where I can be myself. If I can't be honest here I might as well stop trying... and stop writing.... On a happier note, I still live pretty grand adventure and I hope I can keep living my life out the way I want to. 

What is Understanding?

I read a blog today that gave me an idea... It made me think "What does it mean to Understand". By that I mean to understand an individual's experience of being in the world. We all have commonalities such as having disabilities or siblings or friends. But you can't understand what it's like to get in a fight with my sister even though you have your own. You can't understand what it's like to navigate the world in a wheelchair even though you have mobility problems. So why are people so quick to say "I understand exactly what you mean". Do you? Do you really? 

There is in fact a lot of stuff you simply cannot understand from my experience. If you have a family member or friend who has a disability, you might understand some of it from a third party point of view. You will never personally understand what it's like to wait for handibus all day, or constantly repeat yourself for others, or deal with all the stares. So why bother lying to both of us with the statement "I understand how you feel". Even if you have Cerebral Palsy and find yourself in a wheelchair, it's still not exactly the same experience I'm having. 

The statement "I understand how you feel" often comes from a well intended place, a person is often trying to be empathetic/ compassionate. But it's terribly unnecessary and will never be a true statement. In fact, it can sometimes feel belittling to the person on the receiving end. So let's try to erase that statement from our vocabulary. 

Friendship or Dating?

At the age of 35 and living with Cerebral Palsy, I realized that dating is not a big deal to me. At least not in the same way it is for some others with disabilities. I wish that I had someone to hang out and chat with on the weekends. But rest assured, it's not the end of the world for me. Maybe I feel this way because nine years ago I got hurt by a handi bus driver. It made me be more cautious of the men I meet. Whether I meet someone online or in person, I feel I need to have my guard up and be careful.  

Don't get me wrong, I am not a man hater. I have a few good men in my life, they are family members and friends that I trust. As a woman, I have a responsibility to listen to my heart and also to guard it. Being in a wheelchair adds another layer of vulnerability to me. I would be a fool to not take that into consideration when men approach me. 

I know what you're thinking; "What if it was a man who also had a disability who approached me?" Well that has happened to me at least once before. A gentleman in a wheelchair who also lived in Calgary reached out to me. I had seen him at a few different places around town (including the hand-bus), but had never interacted with him. I knew he wasn't capable of physically hurting me in the same way. But I still felt quite nervous to hang out with him. Now we are friends. 

You know what would be really great? I think it would be great if Calgary had a dating service catered to individuals with disabilities. Perhaps it could include people who are looking for friendship or companionship as well. Maybe there could be extra safety measures taken to ensure everyone's health and safety needs are being met. Someone should take this idea and run with it!

Oh No You Didn't Just..!!

If you've spent some time around me, you'll know that I have a tendency to raise my voice. Especially if I'm excited about something, or having a good laugh. I'm not trying to be loud or disruptive, it's just part of who I am. One of my quirks I suppose. 

This usually doesn't get me into trouble when I'm out in public; however last week was a different story... I was with my worker at the mall. We were chatting and there was a lady sitting across from us, facing my worker's back. While we were talking I got a little loud and the lady sitting at the table across from us looked at me and placed her finger over her lip as if to say "shhh". I wanted to go over to her and say "What is your problem? Can I talk to my worker in a public place?' But instead I was silently offended and chose to let it roll off my back. I kept talking and I still got that look from her. I didn't want to make a big deal about this, so my worker and I moved to another place. 

Now I regret not speaking up for myself. It's hurtful! If I was an able-bodied person having a belly laugh, would I have gotten the same response? It is a mall after all, not a library or a theatre. Would it not be more appropriate for her to move somewhere else? At 10:30am it is a pretty empty place. If I have learned anything from this, it would be to let her ignorance fuel my fire. The next time someone makes me feel like I don't belong, I will gladly correct them. 

Talking To People

Talking to people is hard for me. My speech is a pain because you can't understand me when I speak. Sometimes my family and friends can't understand me never mind strangers. I have to say things over and over again or try explaining things a new way to help others navigate what I'm saying. It's ok because I'm used to it, this always been my "normal"..... But sometimes I wish I could talk like other people do and have a conversation without struggling my way through it. 

As I was reflecting on my communication struggles I came up with an idea; I want to make an app for people who can't talk like me. It will have a lot of pre-made common sentences that you can press and let the app speak for you. I want to go downtown and open up conversations with strangers and see if they talk to me or walk away. 

I will do it all over the summer. Hooray for a new project to keep me busy!!

Another FUN day with Access

This is my pet peeve for the day:

What do you do if you have to line on someone to pick you up? Every week I go out three times: Tuesday, Wednesday and Thursday and I need nine trips with Access for that. On Wednesday I go to the gym to work out, and than I go to the mall to work on my writing. Last night I phoned Access to see what time is for my ride for the next day. It said that I have three trips for today: the first one between 8:10 - 8:30 am to pick me from my house, the second one to pick me from the gym at 10:30-10:50 am and than the last one to pick me up from the mall between 2:05 to 2:25pm. 

So last night was fine, but in the morning I gut up and get ready and I went down stairs because I live in an apartment and I always go down five minutes before my window starts. I went down around 8:05 am. At 8:30 a phoned to double check my pick-up for today.They told me that I have two rides today so I went back upstairs to tell my roommate what happened.  She called to talk to someone on my behalf and they said that i was canceled . My roommate told them that she called last night and it was ok and she asked if they can get me another buss for this morning.  They  said to hold on and they will find another buss. They came back after a couple of minutes later and ask if I can go in a cab. I was a little upset because I used Access for 18 years and I couldn't understand why they couldn't send a bus instead of a cab for me. They are supposed to know that I can't take my power wheelchair with me in the cab. So I messaged my facilitator to tell her what happened and explain that I will be late. I also mentioned that I'll be comming in my manual wheelchair. She helped push me around and I'm so grateful for her help. It's ok but I love my other wheelchair more because I can go whatever I want and I don't have to rely on people. 

I really hope that other people don't have the same experience as me.

Don't Call Me One of "Them"

This is something that's been on my mind for a while now and I want to get it off my chest. I receive support three times a week where someone accompanies me out in the community. I start my day off with a workout at the gym. Occasionally there are a couple of other people who have disabilities as well. The people at the gym have embraced me and my differences and treat me like any other member. After I finish my workout I go to the mall.


 My worker and I go up to the food court and work on whatever I have on the go. Sometimes there are several other people with disabilities. I try to stay away from them because of how they are perceived by the general public. I don't want people to associate me with them. The most unfortunate part is that it's not their fault. I blame the workers assisting them. They are often not engaged with the person or just flat out ignoring them. It sends a strong message that the individual isn't worthy of someone's time/ attention. It also leaves the impression that they don't have much of a life and they simply spend their days sitting in malls. It's assumed that they don't have the capacity to communicate or contribute anything to society. It hits close to home for me because sometimes I wonder if I had another kind of disability, would I be in the same boat? Would I be subject to a life of people ignoring me and seeing me as a burden? 


Well I've decided to do some of my own investigating! Next month, I am going downtown to see if I can get people to talk to me. I want to see if I can open up a conversation as a person who has a disability. I hope it opens up people's preconceived notions of what it means to go through life with a disability. I hope I can have some good conversations at the very least!

Take a picture.. It'll last longer

This morning when I got to the gym and waited for my friend, there were a couple of kids that came in and stopped in the middle of the lobby and looked at me. It was kind of sad and it made me uncomfortable to be stared at. I know that they don't understand that it's not right to look at people for an extended period of time... But I just wanted to say "What the hell are you looking at"? She honestly stood there and stared at me for what felt like two minutes. Then she started walking away to catch up with her mom further ahead all the while her head was turned back at me. 

It feels like people are looking at me every 5 minutes today. I don't know why. Has anyone ever seen a person in a wheelchair talking to their friends? Is that shocking? I don't get that. I seem to elicit two different reactions from being in a wheelchair. Either someone will unconsciously stare me down like an alien... or they will do the apologetic "avert the eyes" where they immediately look away after noticing you're in a wheelchair to prevent them from staring. I get this all the time and I'm used to it but sometimes it pisses me off. Sometimes I want to say something or look at them the way they look at me. 

All I'm trying to say is it's ok to notice me, it's ok to see me. I'm a person who deserves the same respect of personhood like everyone else. Staring at me or pretending I don't exist are equally inappropriate responses to me sharing a public space with you. 

Wheels On

Wake up, get dressed, settle into my chair for the day.
My home away from home, extension of my body, 
part of my identity.
The thrill of it has long dissipated with the days of my youth.

People say "Take your life by the wheel", 
Well I've got six of them and it doesn't feel like I'm going anywhere.
If my chair could talk, it would tell you about all the dreams, the wild adventures, 
the boys to be kissed.
All the Pieces I've shed in it. 
All the parts of me waiting to be lived..

Waiting... waiting... WAITING...... 
For Access, for friends, for life to begin...
I've mastered patience.
Spend enough time in a wheelchair and you'll either become bitter or virtuous.

Well I AM DONE... being carried through life,
I am taking back my life - in style!
On my own two feet.
You wouldn't dare a mile,
in my shoes...

But I do! 3x a week at least.
Truth be told, I sometimes feel like a beast!
Taking on the world and going after my dreams.
Traveller, Writter, Blogger, walking's just out of reach.

Deep down I know that I will always have a disability.
Things will always be a little harder for me.
I don't need to be fixed with some kind of surgery,
I'm Shawna, I have Cerebral Palsy, and that's just fine with me!!

The Complications of Having a Romantic Relationship with Someone who has a Disability.

Don't worry, this isn't the R rated information you came here for... I promise! I started thinking about this topic when I witnessed an incident a couple of months ago that didn't sit well with me. It's been heavy on my mind lately so I thought it would be great "blog" material... 

Before I begin this story, I just want to clarify that this is not me talking about an incident that happened to myself in third person. I was at the mall with a friend and we had finished up our shopping for the day and were patiently waiting for ACCESS to pick me up. I saw a woman in a wheelchair a little further down from me who was waiting for ACCESS with a gentleman by her side. There was nothing unusual about it, I assumed he was a friend. Then they began cuddling and laughing. Of course with her being in a wheelchair, most of the advances were initiated by the man. They seemed friendly with each other and then he began kissing her. It's none of my business and I don't want to say anything out of line, but I wasn't sure if she was "ok" with being kissed. I wasn't sure if he just crossed a boundary with her or if she really was ok with all the advances. 

I have been in situations where men have gone too far with me and I wasn't able to protect myself. I don't know if that's really what was going on or not. Perhaps they were in a loving relationship and this was a very normal and usual occurrence. I tend to be pretty good at reading people and situations and something didn't feel right in my gut about how she responded. But intuition is a very grey area, it doesn't make something "true" just because I feel a certain way. 

Someone once told me that he would be worried about being a relationship with a person with a disability because it may look like he's taking advantage of them. I understand that but on the other hand, it's no one's business. It is my right to have love in my life and to be free to express that in public. With that being said, I do take precautions in public because I don't want to draw more attention to myself. I don't need people to stare at me and wonder. I wanted to give that lady the same respect, so I didn't stare. But the reality is that being a woman with a disability significantly increases your chances of sexual harassment. You are simply more vulnerable. 

So how do we differentiate what is respectful consent and what is abuse? Are there any actions to take when we're unsure? Some situations are more clear than others. In this case, I would have been crossing the line if I intervened when I was unsure about the situation. I mean if this woman was actively pushing him away, it would have been obvious that she didn't want him to do that. But she may have been shocked, or scared, or didn't want to draw attention to herself. Perhaps she was having a bad day and that is why she responded the way she did. While I may feel a responsibility to speak out against anyone I see take advantage of someone else, sometimes you can't tell. It's her life, it's her business and no one else should have a say. 

I would sincerely appreciate any comments or experiences or ideas to be shared in the comments below. I believe this is an important conversation to have.