A focus on three fronts (my day) plus change and free-range geeks!

What is a successful day? Well, I didn’t have a TIA so that is a good sign. I didn’t get much sleep last night and started with a meeting at Triumph. Since Linda had noted that the people at Triumph don’t have a plan, I came with an agenda (and printed two copies, one with me and one for them). The first point was the Ergonomic Report that was supposed to be at the meeting five weeks ago. It said I needed a wheelchair that tilts and supports my head as well as arm rests for working at the computer and some other specific equipment. The person had said that finding the wheelchair, while the number one OT recommendation, seemed impossible to find and would need to be custom built.

If you are like me, you are thinking, “Where am I going to get X thousand dollars to get a custom wheelchair?” but what I said is; “Actually that kind of wheelchair is common for ALS and C2-3 quads among others…” I then gave her the name of Janet and told her to give Janet who is a Wheelchair Physical Therapist the Occupational Therapist report and she would find the right chair and then do a seating clinic with me. It seems that because this is an “official report” on what equipment I need to keep working, that Triumph will pay for it (Linda says it is like my GP, if they get a specialist report, they can act, if they don't, they flounder). So while I still can’t get Triumph to talk to people at the federal government about jobs, they are happy to shell out X thousand dollars for a wheelchair. Does that make sense to you? It doesn’t to me.

Also they said that Dragon wasn’t working (according to the report). I said, no and pointed out again that Dragon may work FINE on the computer Tech Services sent but I cannot LIFT the computer or set it up and I don’t have a monitor to make it work. So it sits there, month after month, right now it is holding up my headbands with skulls and a tupperware of Doritos in case I ever get hungry (haha, not likely). That we needed someone who could MOVE the computer and put in another power cord. But it seems no one or agency can do that so we are still stuck (where are teenagers when you need them?). Also, I am supposed to get five hours training on Dragon, but not on THIS computer (mine) which runs 1997 Windows Office which is why Dragon Naturally Speaking 9 crashes (also crashed becuase my computer has a crap sound card and a few other issues). At this point the case manager went to a box and handed over a disc for me to use instead of Dragon Naturally Speaking (where I speak and the words appear on the document). This disc is for BLIND individuals. She said this is the best program for those who are BLIND. There was no manual and I thought, “If I am blind, how am I supposed to find the manual much less install this and configure my computer.” Which was followed by the thought, “Why exactly, when I have problems using my HANDS am I getting software for people who have sight problems?”

Then the manager said she could get me the computer that “That guy used in the movie when he only had his one eye.” She was referring to the Diving Bell and the Butterfly and I told her that he didn’t use a computer but a board with letters and that his name was Bauby. She said, well there was a computer now which used one eye to do everything and I could have that (and I would want that to go with my software for the blind?). Or maybe they just want to send ANOTHER computer that is too heavy for me to remove it from the box.

I said, I understand but I need to talk about the other three things; for instance getting vetted for the government subcontracting program. See, when the government wants to do a study, they go to a central vetting agency which has vetted people who then do the study whether it is “Is hydocarbon buses cost efficient?” or “What are the needs for paralympics as seen in previous venues?” As a writer, who is self employeed, getting that vetting done is important. I could get work.

Also, due to my interaction with the YMCA/YWCA I realized that even the people who are in charge of the coordinators did not realize what actually is ablist thinking, or disablist behavior. So I decided I was going to create a presentation to help them.

Why so much disabilist thinking in athletics? Because in Victoria, like California, there is often a mental discrimination against those who don’t regularly exercise, as because of the weather there is a culture of exercise. So, for example, a person who comes into the Y for the first time, overweight and tries some machines may receive less encouragement than a person who comes regularly. But that is the opposite of the objective of inclusion; to get those who normally DO NOT participate to try and participate in sports or exercise. And it seems that in some sports or activities the competitive aspect of sports has overshadowed the originally YMCA purpose, which is to ensure all people have an equally good time. So, for example, having the coordinator give me special treatment by always pairing with me, actually is disablist behavior. Because through example instead of helping everyone learn how to integrate with people of different abilities, it is saying that a person in a wheelchair must be “protected”, which makes two classes of people: the regular ones and those who must be treated differently, those who are less ‘able’ (and thus not EQUAL). Now, will I be an EQUAL player in ability to an able bodied competitive badminton player? Likely not. But since we are playing RECREATIONAL badminton, then ALL people are equal, and while some use their abilities to make a team more even in skill level, all players are equal in focus (having fun) and should be viewed and treated that way.

Ironically, the person who is “helping” the person will often think they are doing good, are going out of their way to assist this person and so, when someone like me says, actually you are being disabilist, they can get quite hurt or upset. But would they assume if a black player showed up, that a coordinator should jump up and go, “Oh, I’ll pair with them, that’s okay.” Well no, because that would be insulting. But because while my skill set is not obvious but my limitation (the wheelchair) is obvious, it is thought that I need to be “contained” so that I am not hurt. But Recreational badminton actually means participation with all players. So if they don’t know how to deal with it, then instead of keeping me to be paired with a few players, it is an opportunity to help everyone, by pairing me up with many people.

What frustrates me is that DANCE organizations like AXIS get this, mixing able bodied and those with impairments together, with great success,

so why in sports are “wheelies to stick with wheelies” – that is SO bronze. I don't do bronze.

In talking to the athletic director of the YMCA, it became apparent that he and all of the managers I had spoken to (all men, oddly), did not UNDERSTAND what disabilist thinking was. And while I could request or require that people needed to be trained in avoiding it, if the athletic director or the head of the Y in Victoria doesn’t know themselves, or hasn’t had a presentation, how can they pass that along? So I decided, unless another agency has already got a presentation to make one myself, have myself vetted for BC government work and then GO to work.

Back at Triumph, the focus was entirely on the equipment. “You are an employee in CRISIS” my case manager kept saying. I said, “Yes, but I have been IN CRISIS for over six months and since I am self employed if I don’t focus on GETTING more work, I will be out of work. And not because I don’t have the right mouse or keyboard but because I haven’t been able to secure leads.” This is when, after pressing her to find out what local contact Triumph had I was told that Triumph approaching the private sector would actually be a strike against me. Why? Because Triumph deals primarily with mental health disabilities (80% I was told) and this stigma would stick to me, and besides, she continued, if Triumph is approaching them, then they will know I have a disability, and if they know I have a disability, I won’t be employed. “You know this!” she finished.

Well, yes, I knew from experience that many people didn’t take my application for a job but when the AGENCY paid for by the government to get employment for people with disabilities has GIVEN UP, has said, “Hey, you are unemployable because you are in a wheelchair and no one hires people in wheelchairs”, and when changing that image isn’t their number one priority…..then we have one FUCKED UP PROVINCE. I am sorry but it is like hearing from the human rights lawyer that I might as well not stand up for my human rights because “The Judge will rule against you because you are a lesbian and you know that everyone hates gays.”

Okay, the Federal Government has said it is my BASIC human right to be treated equally regardless of disability, and the agency employed by British Columbia is saying, “No one will hire a person with a disability if it isn’t charity work or entry level jobs.” And right now that is it. That is as far as Triumph wants to take it. Which makes me feel, honestly, that since I CAN see the need to change that image and by networking among businesses in the community I can accomplish this and Triumph can’t, then they need to hire ME. And if the Y can’t deal with integrated activities, and don’t recognize disabilist thinking then THEY need to hire me too.

Because, a year ago, I accepted from the Y when they, without any personal medical training or running it by medical experts put on my file that I MUST HAVE a doctors note to do activities because I was now in a wheelchair. I accepted that. Why? Because I was so freshly able bodied I did not recognize that as ablist thinking, as discriminatory behavior. I don’t accept that now, and I don’t care about your PERCIEVED liability. If you want to put that restriction on me, because you SEE a wheelchair then you need put that restriction on every person who comes to exercise with cholesterol over 400. Only they don't because they can’t know that, because those people walk on by. See, start to get it now? There are people at the same or greater health risk than me, but THEY don’t have to prove medically that they are ALLOWED to participate…..because they can walk. THAT is discrimination. And while it is a liability issue, it is one about whether you want to go to the human rights court, not about if I die in your building.

Anyway, after that I did another two postcards and got them posted and then slept and slept and slept. I didn’t have a night worker last night, or rather, I had to send her away as she did not respond correctly to some basic questions/comments.

Me: “Sometimes, I stop breathing.”

Her: “I put on the oxygen.”

Me: “No, not a hard time breathing, at times I stop breathing AT ALL.”

Her: “I put on MORE oxygen.”

Other time I said, “Your job is to make sure I live until morning. Yes? We had one worker, and when I said that she said, ‘that’s okay, many of my clients die’”

Her: Stares at me.

Me: “Her clients died, I need to live.”

Her: Stares at me.

Me: “Do you have any questions?”

Her: Stares at me.

This does not give me the confidence I need; the appropriate response ranges from, “Well, I want to make sure you live.” To “What an inappropriate thing for her to say.” Inappropriate response is to stare at me as if I am telling you where the coffee machine is.

And to continue the change brigade, when I woke up Linda and my father were taking apart my office, and putting in the air conditioner. After 90 minutes, they had finished for the day, however, to type this blog they had to put SOME of the desk back together. I am sitting a bit in the middle of the room, but I am assured that things will be all better soon and I will have a computer, a computer desk AND an air conditioner. This is good because people (like me) who are physically dependant, and can’t move things like desks around, find having their belongings scattered around and having huge change to be rather scary.

I understand the air conditioner is needed and I even WANT it, but I want my computer station for the next few days too. And I find change.....uncomfortable (scary!)

We finished the day by watching the Documentary King of Kong which is about men. Or rather about the very special type of men who obsess over original video games and go to competitions and play Donkey Kong and Pac Man and Ms. Pac Man and other such things. And how this world turns out to be a male dominated clique world where certain people are revered even if they are sort of assholes. Also, where you can see single men throw fits because they did badly at Spy v. Spy or some pinball game. I said to Linda that if they ever had a Microsoft Solitaire championship that you would see primarily women because Linda can get crazy scores on Solitaire and she isn’t even top in her group of women at work. She can get crazy scores on Minesweeper, the 999 version. So while guys are throwing giant expos to play games from Donkey Kong to the new expos of whatever new game allows you to do headshots, women are playing their games too, it is just they don’t have a computer Solitaire championship (for all I know they do - it just isn't as advertised).

But the documentary did seem to reinforce that a bunch of guys who thought in a very particular way (in spatial thinking and random factors) made games for other guys who thought that way. It was an interesting documentary from the gender point since the only female showed was this 80 year old woman who kicked ass in Qbert (the little thing that hops from square to square changing colours).

In job hunting, as days goes, it was frustrating because while I would like Triumph to help me accessing Federal jobs (since federal and bank jobs HAVE a quota system and with a lesbian crip, I am sure I would fill the Victoria Island quota system), instead they are going to try and get me a multi-thousand dollar chair for the time I cannot do chair transfers anymore (not that I don't need that too). Plus tomorrow I have to go up to Badminton to face the coordinators who I have been told are “hurt and quite honestly angry” which indicates that they were told it was ME, by name, who made the complaint. But I guess it is worth it because I told them, hey, I am hoping to have friends visit me in the summer, and everyone that comes, I am going to try and take them to BADMINTON. So, I will be the one everyone hates or moves away from and stares at, at least for this week.

But I got to talk to Linda and watch hard core geeks in a film which is like watching Pandas and others species which seem so incapable of taking care of themselves you wonder how they continue to survive. And this is from someone who used to BE a programmer, and won awards in programming. But then, I opened a door and saw amazing, wondrous things, like…..the sun, and grass, and flowers. And unlike in Frogger, they were 3-D and I didn’t HAVE to jump on them to survive.

Sorry for the total ramble. I will try to be focused tomorrow, I am just having a three fronts to deal with (the Y, Triumph and the care givers) when I really want none. The current postcard count is now at 23 for the last 76 hours and I am going to KEEP rolling, so send me your address if you want a card (becuase I want to send you one!). I received an emergency shipment today and am ready to kick it into high gear (yup, FOUR cards a day), and I hope in a day or two, the first of the cards will start arriving. Yes, the start of summer, when Elizabeth’s postcards arrive!

I actually went to sleep this afternoon trying to figure out how to take the postcard plan up to the “small package” plan and how to find some groups of things that would make people almost universally happy. This is what I think about while slipping into sleep, that and how to do the perfect sideways drop hit at badminton.