Thursday, August 17, 2017

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. 

Tuesday, August 1, 2017

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/

Thursday, July 20, 2017

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!


Wednesday, June 7, 2017

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!

Tuesday, June 6, 2017

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. 


Tuesday, May 23, 2017

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.