Thursday, April 20, 2017

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!!

Wednesday, April 12, 2017

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.

Tuesday, April 4, 2017

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!

Tuesday, March 28, 2017

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. 

Tuesday, January 17, 2017

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!!

Tuesday, January 10, 2017

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.