Call me

So, I'm out of work for the moment. I'm still employed, but there just aren't any shifts at the moment. So I'm home. All the time. Alone. In this city I moved to a year ago.

Now that I have all this time to myself, I've been thinking. That can be a good thing. That can also be very, very bad.

See, I'm a pretty insecure person. I worry. I worry about everything. I worry when I'm awake, I worry when I'm asleep. I worry when I'm having breakfast, I worry at the gym. I worry everywhere. I worry that I will say the wrong thing. I worry that I've said the wrong thing. I worry that no one will like me. I worry that I'm not good enough. I worry that I don't fit in with non-disabled people, I worry that I don't fit in with disabled folk either. I feel completely and utterly alien much of the time.

Having said that, I'm often amazed that I actually have friends. A couple of them really good friends. But I still worry about them too. I am never secure in the fact that they are indeed good friends. When I was in high school, it was usually me calling them, asking them to do stuff. Most of the time I got the "sorry, I'm busy" response. I have one friend from high school who's stuck for 17 years and counting. That's something. You'd think I'd be able to figure out what is right in that situation and use it in others. Doesn't seem to work that way though. I mean, obviously it has to do with differences in people, etc. You're not going to get along with everyone, much less create intimate bonds with them. But every now and then it happens. Now, I have to say that it's not always me getting shunned by others. I do my fair share of shunning. Many people who come my way just don't interest me for various reasons. They're too needy, boring, egocentric, fake, shallow, angry, whatever. The ironic thing is that I'm needy, angry, possibly a bit egocentric and shallow. Not all the time, but I think we all have these traits in us. I'm no saint, and certainly am far from perfect. I have hangups, character flaws, social ineptness. Lots of them. But ultimately I believe I have the ability to be a good friend, to those who I chose to be a good friend to.

Since I've been out of work, I've been noticing some things. In the 2 1/2 weeks I've been away from work, all contact with colleagues has been cut off. My overanalyzing mind is having a field day with this. Since I moved here, I have made what I feel is quite a bit of effort to get a social life. Now, considering my background of ineptness and self-doubt, it probably felt like more of an effort than it was seen as. I've initiated socializing at least twice with pretty much everyone I want to get to know better here. I've had people over for dinner, I've gone to plays, movies, coffee, museums. What I've found is that, although these people have accepted for the most part, I have gotten very little of that back. With the exception of perhaps 2 of these people, and one of those only very recently, I have not been called, invited, sought out. I am at my wits end. One friend here, who I met almost immediately upon moving here some 1 1/4 years ago, calls me quite frequently and we have great long chats. She has not once initiated meeting and in that time we have only actually met up outside of work twice. I voiced my frustration to her and she said she was just really busy and that she felt phone calls were just as good as seeing the person. I disagree. See, the way I see it is she only calls me when her boyfriend is not home. So, it's not actually making time for me, which is what a friendship does, but rather it is fitting me in to her alone spots. We also email quite frequently and she is very encouraging and supportive of the things I do and the fact that I am out of work and that I find it extremely hard. So now I am unsure as how to proceed. I do not want to lose her as a friend, as my pattern in the past is to just cut people off when I feel there is something wrong in our relationship. But, nor do I want to accept things the way they are. I know I cannot change her, and I have already expressed the way I feel. What is left?

I also have a similar situation with another friend. I've known her for much longer, and she was the only person besides family I knew when I moved here. But she has not made much effort to socialize either. We have done some lunches at work that she has initiated, but now we no longer work together and I rarely see her. She emails me too, frequently, but it is short one or two line sentences. She has only called me when I have called her and left a message. Last month was the first time since I have known her that she has initiated getting together, and that was nice. We went to a play in a neighbouring city. She's had a rough year this year, and I do understand that. The thing is, I just don't fully understand what is not exactly working. Is it that I am overanalyzing? My relationships through time have usually been complicated and tense at times. I can get really close to someone and then something goes wrong. I start to realize they are getting too intense and all we talk about are their problems, or they start backing off from me. The whole notion of being yourself and let things go as they may is a bit foreign to me. Not that I'm not myself, but I'm so completely guarded. And because of all the experiences or lack thereof, that have separated me from my peers, my wholse sense of what is normal is whacky. I worry about things like am I calling too much, what to say, what to suggest to do, does the other person want to see me, what if they see through me. So it festers. And it festers. And then... kaboom! it's gone.

I really would love to get to the point where I can have somewhat stable relationships with people. I'm tired of struggling. I know these things always take work. Nothing is ever easy. But I have a feeling it should be a lot easier than it is.

Travel annoyances

A few weeks ago, I went on a trip for the weekend. I took the train, as I have done often for short trips. I went with a friend, she was the one who bought the tickets. Now, this friend was planning to buy the tickets from the station near her, which was the next stop from where I planned to get on. When she bought the tickets, she told the ticket agent that her friend was in a wheelchair and requested the wheelchair tie-down spot in first class. This way you can stay in your wheelchair and still pay coach fare. If a person in a wheelchair needs an escort, they travel with you for free. However, I don't need an escort so I assumed we would each get our tickets for normal coach fare. But the agent didn't ask my friend if I needed her to travel, he just I guess assumed I did and didn't charge her for her fare. So naturally, my friend and I split the cost of what she paid, which was one coach fare.

The train ride down was no problem at all, and we had a very nice weekend. However, coming back was a bit more dramatic.

When you're a wheelchair traveller by train, the conducter needs to know where you're getting off so he can call ahead to that station and request the wheelchair lift to get you off the train. Usually when you buy your ticket, this information is transmitted before the trip by the ticket agent. When my friend bought the ticket at her station, the ticket agent put her station on both the tickets as the departure station. My friend explained to him that I'd be getting on the station before. He told her it would be no problem for me to get on at my station even though my ticket said her station.

So on our return trip, the conductor comes around to take our tickets. Now, when you have a person traveling with a wheelchair user, they sit in the seat across from you, which can be turned around since normally it is facing the opposite direction from you. I asked the conductor if he could turn the seat around so my friend could face me. He did. However, a few minutes later another employee came by and told us some other passenger had reserved the seat next to my friend and the seat couldn't be turned around because it was facing the "wrong" way and we had to ask the person traveling if they minded. She immediately made us turn the seat back around. The thing was though, that this other passenger wasn't getting on for another 2 1/2 hours! I started fuming out loud saying that was ridiculous and that I was going to write a letter about it. The first guy who had turned it around for me initially heard me and said they'd turn it around for now and ask the person who was to sit there if she minded facing the wrong direction. The person got on finally and when we asked her, she said not at all. So there was this big hoopla for nothing. But it was handled very, very poorly.

Finally, I got to my destination and stood in the taxi line to get a cab home. Now, in my city they have recently expanded the taxi service with 50 or so wheelchair accessible cabs. This can sometimes be a blessing and a curse. See, I can get out of my chair quite easily. I have a manual, folding wheelchair which can go in the trunk. Many of the regular drives don't want to bother taking a wheelchair now and expect that you have to take the accessible taxis, but you usually have to wait a bit longer for them. So in a way it kinda hinders your freedom a bit instead of expands it.

So it's finally my turn in line and the next cab is not close enough to the curb for me to be able to get in. It is a regular cab. The taxi stand guy asks the cab driver to pull up to the ramped part of the sidewalk. He does so. The minute he gets out of the car though, he asks if my chair folds. I tell him it does, and open the back seat door. He says he's not sure it will fit in his trunk as his trunk is very small. I tell him my chair fits in most car trunks and it shouldn't be a problem. Besides, there are parts I can take off to make it smaller, but I rarely need to do that. He starts muttering under his breath and puts the chair roughly in the trunk, which he does very quickly and easily. It fit fine. When he gets in the car and starts to drive off, he tells me that there are accessible taxis meant for me and that I shouldn't be taking a regular cab. I tell him I am aware of those taxis, but they are not always readily available and you have to wait a bit longer for them. I tell him I can get out of my chair and am entitled to take any cab at a cab stand or hail one on the street and they are required to take me. He is not happy about this at all. He says "well, I can charge you an extra $5 for the trouble then." I get very angry at this point and tell him that under no uncertain terms can he do that and that he must charge me the same price as everyone else. He starts swearing and said "I guess this is my lucky day then". He is visibly angry all the way home.

When we get to my place, I pay him the exact fare with no tip, obviously. He gets my chair out of the trunk and practically throws it on the pavement. He gets back in the cab immediately and does not help me out or hold the chair for me. I don't need his help, but it's the principle of it. I get in my apartment and immediately call to report him. It is midnight and I only get an answering machine, but I'm too incensed to wait until morning. A couple days later an officer calls me back and tells me they'll look into the matter. I have not called back again to find out what happened. I should do that today. The experience shook me. It's not the first time that a taxi driver has not wanted to take me or made a fuss about it. And it's not the first time I've made a complaint. Each time it gets you at your core being. It affects your ability to see yourself as able and equal to the rest of the world around you. And it makes you nervous about hailing a cab the next time.

School's in!

I came across an interesting article here:

http://www.theage.com.au/news/Opinion/Our-concept-of-disability-is-the-real-problem/2005/06/11/1118347632434.html.

I didn't like the way it was written, but I really liked the points it made. My school experience, like many other people with disabilities, was different from my able-bodies peers. I started school in a school for people with disabilities. Actually, at the time part of the title was "for deaf and crippled children" . Luckily, the name has been modified since then and that part was taken out. The school was designed for people with physical, cognitive, and learning disabilities. There were "normal, able-bodied" children in the school as well. They were called "intergrated" kids. I can only suppose it was designed so that people with and without disabilities could intermingle and become better people as a result. A noble notion. However, there was a major flaw in their plan. The intergrated kids were only allowed to go to this school for one year. Now, because it was a specialized school, you had kids from all over the city there, not just your neighbourhood. I stayed at that school for 3 years before I was deemed "capable" of going to "normal" school. During those 3 years, I made a lot of friends, both disabled and non-disabled. However, only the disabled friends remained for any duration. Once an able-bodied kid was back in their regular school, I never saw them. One of the main factors of this was distance. When you're growing up, you tend to have friends who live in your area. When you live far from your friends, it takes a lot of planning and it is just harder. We kept in phone contact for a while, but I never really saw them after they left. So from the very start, there was this notion of being different and separated from non-disabled people.

After I left that school, I went to another school that was one of the few schools people with disability went. This school had more non-disabled kids than disabled. It was further from my home. All the non-disabled kids lived in the area. I lived about half an hour away. I did make a couple friends at this school, and actually kept in touch with one for some time, but we rarely saw each other. It was odd going from a majority to a minority though. At the first school, the focus was disability, at this one it was much less so. The first school had all my needs met. I had to be more responsible and independent at the second. I really found this hard. It was the first time I really noticed being different. I couldn't run and play with the other kids at recess and lunch, so I just sat on the sidelines and watched. I had been a pretty bubbly, outgoing, smartaleck kinda kid up until now. This school brought out a new, quiet me. Looking back, I actually have fond memories of this school. Fonder than the first. I believe things might have been different if I had gone to this school from the beginning, but who's to say.

That second school only went up to grade 6, so I had to change schools again after that. In grade 7 I went to yet another school, this time much further from my home. Many more disabled kids at this school, but it was a huge school of about 1,500 students, so the smattering of disabled kids hardly made a difference. I really didn't fit into this school at all. I was the only disabled kid in most of my classes. One thing that I thought was really awful about this school was that all disabled kids, whether they had learning disabilities or only physical disabilities, were taken out of certain classes (for me it was religion and geography) to be put into a "special education" class. This class was where a group of disabled kids got to be in the same room while we did our homework and got extra help with things if we needed it. I didn't need it. Yet, I was still put into this class.. for a year and a half. I finally spoke to my dad about this and asked him why I was in this class. He said "I don't know!". He then spoke to the school and I was taken out of this class and put into grade 7 and 8 religion at the same time. It was very odd. I had a friend who liked to push me around on my back wheels. I thought this was fun, but one of the special ed teachers told me that I couldn't do that unless I wore a helmet coz it was too dangerous. A helmet!! I, with only lack of use of my legs.. none to my arms or mental capacity... a helmet!! Unfreakingbelievable!!! Luckily, I was only at this school for 2 years before I moved to my final high school; a private school.

Private school isn't all it's cracked up to be. Looking back, it's so easy to figure out what you should have done or what they should have done, but at the time you don't know. You don't want to be treated differently, you don't want to admit you can't do what others can do, you can't admit your life experiences have been so completely alien to your peers. I had a lot of problems in high school, and they continued in this private school. I had always been a good student in elementary school, I excelled at most subjects except science. That was not the case in high school. My marks plummeted, I failed courses, I stopped trying, didn't do homework. It wasn't a rebellious stage really, it was more like a paralyzed clueless stage. I was so lost by this time that I had no idea how to get out. My personal life or lack thereof was the main focus and anything else paled in comparison and was just not worth focussing on. I really began to feel like I was a misfit, flawed, broken, unlikeable. I should mention at this point too that I missed a lot of school. I was in the hospital so often, mostly for surgeries. I missed half the school year twice in high school, and periods of a month or so at other times. This certainly didn't help me to fit in. When other people were off on their first sleepovers and dates, I was in the hospital. When classmates went off for a Coke after school, I had to catch the 1 1/2 hour bus ride home. I didn't know how I was supposed to act, coz I couldn't relate to what my peers were going through, as they couldn't relate to me. I didn't have their adolescent experience and they didn't have mine. We were like two foreign alien species. Things they took for granted, I never experienced at all.

After high school things got better. I did manage to keep one friend from my last high school, who I still have today. We seem to get closer every year. She's a wonderful person. And I have other friends I've made along the way. My record of keeping friends for a long time is less than stellar though. We end up drifting apart. And that is especially true for men. The great majority of my friends have been women, with a handful of men scattered in along the way. And I never trust that a friend is a true friend. I always worry about our friendship. If I say the wrong thing they'll go away, if they find out the real me, they'll run. So, I'm still learning about that.

My parents brought me up to be as independent as I could be. That is a good thing, but sometimes it goes too far. The fact is I am disabled, and some things I cannot do, and that is okay. I shouldn't be ashamed that parts of me may look different, or that I need help sometimes, or that I am physically and emotionally different from others. I think addressing this as early as possible in a child's life is crucial. A child with a disability needs as much opportunity as possible to be with other children, both disabled AND non-disabled. And sometimes that means that other people have to do things differently to include you. It is not the disabled person's sole responsibility to find where they can fit in the system the way it's already built. Nor should everything adapt to the disabled person. It's give and take. Sometimes it's your turn, sometimes it's not. If it's always your turn, or never your turn, that just can't work.

Special ed. needs to die. It's old, archaic, and doesn't work for anyone but the people teaching it, as it's much easier to lump people together as you see fit and deal with them as one entity. We need more focus on staying in the classroom with your peers. Classrooms need to adapt to all the changing needs of students. It doesn't make economic or social sense to have a different classroom for able-bodied, disabled, learning disabled, ADHD, blind, deaf, behaviour challenged kids. We all have to live in this same world together once the schoolbell rings anyway.

Heeeeeeeeeeeeeeellllp!!

I recently moved to a new city for a job. Since I was new to the city, I obviously didn't know the city bus routes very well, so I got myself hooked up to the adapted transport right away and used that through the winter. When the weather started getting nicer, and the snow started disappearing, I decided to look more into the city bus routes, and found that a lot of the city buses were wheelchair accessible. There was one bus that would go almost directly from my house to my place of work.

There was a problem, however. Directly outside my place of work was a bus stop that had no ramp to get on the curb, so I couldn't get to it. I had to go to the next bus stop, a block or so away. Now this posed a problem because all my colleagues waited at the closer bus stop which I couldn't get to without help. For 4 months I waited at my bus stop, and got on the bus after they were already on and seated, usually in the back. Sometimes I would go down to the bus stop with them and they would help me onto the sidewalk, but this made me feel extremely awkward. I consider myself friends with one of them, but not so much the others. I really hate to ask for help as I feel I'm inconveniencing others. The curb is rather high and so it's awkward to get me up onto it. Also, when on the bus, they can't always find a place to sit near where I have to be, so they end up standing, which again makes me feel awkward.

Most of the time we didn't leave together, as our offices are not all together (well, theirs' are, mine wasn't near theirs) so I would go by myself to the other bus stop. When I saw that they were on and sitting together near the back, I couldn't help but feel left out, although I know it wasn't their intention. It really bothered me that I couldn't just get to and sit wherever I wanted. For a couple weeks I was replacing someone who was away on vacation. Their office was located near the others'. Since they were not used to going with me to the bus, they would all leave together still and I would go to my bus stop as usual. This really started to bother me coz I was right there when they left. I finally decided to speak to my friend and asked her if she would mind if I came with them. She said no, of course not and that she'd see if I were ready on her way out. She said it was good I brought it to her attention coz sometimes when you don't have to deal with something, you don't notice it. I felt much better about this, you wouldn't believe how it was bothering me. I had trouble sleeping coz I didn't know how to deal with this. I felt that it would be too imposing to include myself when it meant they had to help me. Anyway, it turned out very well and I included myself sometimes, and they included me other times. Sometimes I had to stay later, or they did, and we didn't go at the same time, and that was fine.

During this time I decided to try and see if I could get a ramp put onto that curb corner. It took a while to finally get in touch with the guy in charge of that, and when I finally spoke with him he said "It is accessible". I said "no, it's not". He said "yes, it is". After going on like that for a while, he pulled out a map and showed me where it was accessible. It WAS accessible!! However, the way to get there was a little roundabout, so it was something that neither I, nor my colleagues, had noticed. So finally, I was able to go down on my own and just show up at the stop! After 4 months of worrying, planning, asking help of others, etc...!!! The ironic thing is that now that that happened, work is slow and my coverage is not needed for the time being, and in a month or so I'll have to start taking adapted transport again due to the snow, but at least if I'm ever there for a long period of time or get a permanent position, I'll know I can take the bus!

Anyone ever have that kind of experience? It's so hard to explain it to someone who hasn't been through something similar. It may sound small, but it's such a huge issue. Just consider that wheelchair users often have to use back doors, sit with only one companion so you can't go to a concert with a group, sit separated from your companion, have poor or no choice of where to sit, be excluded from certain activities because of lack of access (like being invited to people's houses because they have steps), face ignorance, stupidity, prejudice, ableism, have people not consider you a potential romantic partner, wife, mother, assume you can't have kids, can't travel, hold jobs, be educated, get around. I am used to my life and I am pretty independent. I do pretty much everything myself, but I can't do it all. Yet I still face all these things and that is the hardest thing of all. I have a friend who is also disabled and she is big on philosophy and social policy. She said to me once "you're not disabled, it's the world around you that is disabled." It took me a while to get my head around that, but she is right. It is the sidewalk that is disabled for not having the ramp. It is not I who should adapt to my environment, the environment needs to adapt for me and others with disabilities and abilities and differences in general. This relates to all sorts of differences; people who are too short, too tall, don't speak the official languages, don't speak at all. All sorts. But I, as many other people with disabilities, have been brought up to believe that it is I who must adapt to the able-bodied world. And it leaves me with a humungous burden and feeling of inadequacy. I must be flawed, broken, unwanted because I can't do things the way others do and I must always remind others that things must be done differently because I am there.

Don't go out alone at night, dear!

So two nights ago, I was out with my mother, my brother, and my mom's aunt and cousin who I hadn't seen in about twenty years. We went to dinner and finished about 8:00. We walked from the restaurant to my apartment building afterwards. I have to enter my building from the back door, which is in a large parking lot, because the front entrance has a step. It is now 8:30 and dark, but still what I consider very early. My mother, who is always overprotective, and likes to make a good impression on those around her, says we'll walk up the back street with you. From the street to my building's back door, is still a ways, because you have to go through the parking lot. I stopped when we got to the parking lot and said "this is me". Everyone's standing around talking. My mom says to me quietly "She wants us to wait until you get in". I said my goodbyes and head on in, not looking back, although I can hear them calling me to say goodnight as I got to the door. I was so angry!! I felt completely infantalized. Many would say that I'm overreacting, but when you get things like this ALL the time, it wears you down. Grrrrr!!