more adventures of the paperback princess

Finally out of her lonely tower, the Princess finds a soapbox and calls out loudly to anyone who will hear…

I have spent the last few years feeling like a princess locked in a tower waiting for a prince charming I knew would never come. I knew this because deep down I knew that the only person who could break the bonds that kept me locked up and lonely was myself. In February I was introduced to a few inspiring women with similar conditions to me. They are active members of society fighting to improve living and working conditions, as well as better treatment centers for adults living with disabilities. The world assumes that, as adults, we know what we are doing and we no longer need on-going treatment. In my case - and many others - this is just not true. I just had my third surgery in three years. While the outlook is good that I may see drastic improvement this time (or at the very least stability in my condition), no one can be entirely certain. They can only be hopeful and optimistic. These women I met gave me the courage to break out of my lonely tower, even in the middle of winter. I decided to go tanning. This came as a surprise to the girls at the tanning salon, who have never had a wheelchair client before, but they were always helpful and friendly. I had to wheel three blocks in the snow to get to the salon. It may not sound like very far, but in a chair with no traction, and arms not used to moving myself about long distances, it started out as an extreme challenge. After a few times, however, I began to revel in the experience. This was something I could do on my own for myself, and it made me feel better. Not just because I was getting a tan, or the badly needed vitamins you can only get from sunlight or artificial sunlight, but because I was finally taking a step to being independent. I also went to a concert with a good friend of mine. While we couldn’t dance, or even see the stage because I went in my wheelchair, it was a new experience for me - a wheelchair user - to experience a concert. I have experienced a few concerts as an able-bodied person, but not since the loss of the use of my legs. At this concert, which I went to in March, I was still treated like a person and everyone was quite friendly. So, while I could have wished to actually see the band on the stage as opposed to the screen on the back of the stage, this experience gave me the confidence to do more and more on my own.

Spring came and then melted into summer. Even with my surgery, I have felt like a new woman: a woman with a purpose, and a woman who has the potential to be independent. And that aspect has added a whole new dimension to my life that has been missing for years. I’m not less than human because I lost most of my ability to walk. It is like the new mayor of Vancouver, who is paraplegic, said: “There has to be a better way.” And then he found one, and look where he is today,: in one of the best places to be to instigate change and promote awareness of those with disabilities, and to prove to the world that we are human and people and capable just like every one else as long as we are given a chance. We might not be able to do things like a fully able bodied individual, but there are other ways to complete the same tasks; better ways. So, I have been finding better ways, and have worked toward them. Many of them are financially out of my reach, but with carefully planning and funding, I will reach my goals. I will find stability, and work my way toward a place where I can affect change.

The hardest part about this new awareness and this new experience is discover how often people with disabilities are treated more like liabilities than people. It’s heartbreaking. I went to a concert on the weekend. It was another Hedley concert, with the same friend. This time it was on an outdoor stage, part of a new summer concert series here in Edmonton called Ed Fest. I was excited to go. In fact, everything started out great: we didn’t have to wait in line and my friend and I were ushered to the very front of the stage where at least four other wheelchair users were already waiting with their companions or friends. They were so excited and happy. Some of them haven’t been allowed to even attend concerts before, and here they were - and given a place where they could actually see the stage and the band. It really was awesome. Security warned us there might be some jostling, but if we thought we were fine then it was OK. So we waited in the hot sun for an hour and people crowded behind us, but they are all friendly and excited too. One family brought their little girl, so we let her stand beside us, so she could see the stage and not get pushed around. The first warm up band starts: Murder City Sparrows. They were a good band with tons of energy. It was incredible. It felt like being at a real concert. We even got soaked by the giant hose, and loved it. If the whole night would have been like this, it would have been one of those good unforgettable experiences. Not only for me, but for all of the other wheelchair users lined up beside me, many of whom do not get the chance to get out at all. Most of them are locked away in their own lonely towers.

However, things did change. Security guards starting talking to some of the companions, and only through the grape vine do we hear that we were probably going to get moved before Hedley comes on stage, so that we don’t get hurt by the fifteen year old girls rushing to the stage. Honestly, the people behind me weren’t going to rush the stage, or let anybody rush past them, because they had a little girl to protect. That, and my chair, and all of the other chairs could have handled some jostling. There were some heavy duty chairs. Plus, we were all low enough that they had a great view anyways. But none of those facts mattered. The only thing that mattered was that we were liabilities and they could get fined or have a law suit thrown at them for us being there. So, the parents, companions, friends and people in the wheel chairs argued. I could see them arguing, trying to understand why the security people were being so rude in their dealings with them. Apparently, security threatened to throw them out if they didn’t cooperate. However, after much more arguing security conceded to try to get us a consolation prize for being sent to the back. I hate consolation prizes. Now, the reason all of those ‘apparentlys’ were thrown in there is because NOBODY talked to me. I was completely ignored until after the crappy second band was over. Then, we were told - on no uncertain terms - that we were being moved. For the first time in months, I felt like I was being treated like a dog, or something else less then human. The security women yelled at my friend for looking at her, and the other security guard I tried to blow up at, saying nobody talked to me or asked me my thoughts on the matter, just stood there uncomfortable and said nothing while I cried. Again I felt inhuman, not even worthy of being talked to or consoled. My chair doesn’t define who I am and it doesn’t say anything about me, other than “this person uses a chair to get around.” However, some people just don’t seem to get that. So, all of the wheelchair users and friends were moved around to the other side of the stage behind the crowd gathered there. “See,” they said, “you can still see the stage.” And, when I didn’t move up closer, they asked why. Well, if I moved up closer, I wouldn’t have even seen the stage. Just little girls bums, which isn’t my idea of a good time. After I calmed down, I was able to talk to the other people who got moved and I finally got the whole story. Also I found out that our consolation prize was that we get to meet the band after the show. The show which would end around 11:30, after spending the whole day in the sun, and a band who would only see us cause they felt sorry for us. Sorry that really is NOT my idea of fun. I talked to a 14 year old girl in an electric wheelchair. She was so mature, and rational about the whole thing. She admitted to being upset and crying, but she calmed down, like myself, and tried to look at the whole picture. She was a very smart young girl and if I had talked to her on the phone I wouldn’t have even known there was something physically wrong with her. She was brave and intelligent. These are the things people don’t see. The security people only saw our disabilities, not the people behind them. Also, another piece of information to note was that after we were moved, security completely left us alone. They didn’t see the additional crowds of people that stood in front of us, making it more and more difficult to see what little of the stage we could. And if they did, they really didn’t care. By 11 o’clock, I was getting tired, and the band was almost over, and I wanted to win my boyfriend a giant care bear before the fair closed - not to mention get something to eat, because we hadn’t eaten since 2. So, we left and laughed because we could have heard the band just fine from the fair grounds, and would have saved ourselves the trouble of being harassed. Its days like these that only reinforce my need for independence and my need to make myself heard. Everyone needs a voice, and it is very apparent that some very intelligent people who happen to have challenges that can be labeled as disabilities really don’t have one.

So I am now getting out of my lonely tower and stepping onto my soapbox. It is time to no longer feel helpless.