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. 

Tuesday, May 16, 2017

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. 

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.