The first question Bill, who was 77 with Cerebral Palsy, asked was ‘What do you DO?’
I had not been asked that question in over a year and a half, and here a disabled person was assuming I DID. His view was the opposite of Health Authorities workers, the medical suppliers, the YMCA/YWCA supervisors and directors, the doctors, specialist and everyone else I had met who assumed disabled meant ‘life without focus and purpose’.
Of the five people I talked to at this indoor market for those who knew all about scraping by, two asked what I DID. Perhaps the reason 79% of Canadian wheelchair users are unemployed is because, in this city where the 10K’s goal is to have 15% of the entire population RUN regardless of age, those who do the hiring, who are part of those who ‘have’ equate ‘crippled’ as ‘hopeless and helpless’
Those who are just getting by know that in the underground and sideline economy, where spending a day to make $10-$30 is okay, disability from mental illness to physical issues don’t stop someone’s gig. And that gig is ‘follow your dream’ which often, when kicked to the curb, frees a person to take the risks of following what they love, and hoping some money comes.
I used the world ‘crippled’ because in a film watched last night the protagonist kept saying, “I don’t fear death when I fight; when I meet the next challenge, but I fear being crippled.” Dying was synonymous with being able to ‘Do’, to keep going after your dream, or as he said, ‘The next mountain to climb”, but being disabled was worse that death: it was a unimaginable living dead-end.
I said to Linda on leaving, “My problem is that I’ve been talking to the wrong Canadians. I had given up, thinking Canadians were apathetic assholes. But I've just be talking to those who don't know what life is like on the edge, and the wrong ones." I laughed, "Thank goodness." I went back to interact to those who have lived in the Tower, and it was a relief. It was a cool swap meet. For the whole time I was at the market, the heat of the room turned my body red, and my speech and movement was impaired. But not a single person finished a sentence or interrupted me. And they didn't do tasks FOR me, like when I struggled to grasp coins in payment. I wanted to know what they did, and they wanted to know what I did. We were equals.
The woman who sold me the Margaret Atwood Handmaid’s Tale and Jeanette Winterson’s Written on the Bodywas heading off to India.
The 14 year old who sold me the goth black top, skulls and cats showed me her favorite hoodie, with a music note and skull, music goth. We bartered. “How about 50 cents?” she asked.
“Will you take a dollar?” I countered. I am either very bad or very good at bargaining. That was a good deal.
I talked with some starting Native art carvers. I had met them at the Xmas fair. They were hanging and had the instruments out, carving while we chatted, doing the dream, even if the money wasn’t there yet.
Bill, who told me he had been told by doctors that he would be dead by the time he was 30 proudly proclaimed he would be 77 years old soon. We both belonged to the Quadriplegic Society and he had the same power chair controls as me, I have the beta version and he has the alpha version. Bill’s CP makes it harder to understand, but he waited for me, and I waited for him. We traded info about hospitals, and rehab, wheelchair fitting, and hobbies. He gave me a sleep shirt with native art on it. I picked up that Bill, like me, liking having a talk. I also noticed that he liked a) talking to women, flirting a little, and 2) looking at their breasts.
Was Bill the 'normal' Jerry Lewis on his telethon fought for? Jerry always talked about the ‘wretched lives’ of those with MDA and Cerebral Palsy, and telling everyone that like Bill was told, and Harriet Johnson: they would die young, young, young. Or rather, they would die UNLESS they live for Jerry (seriously, he states that one boy is 'still alive' because he, Jerry Lewis, took time to go bowling with him: and that like the Babe Ruth story, he is the Babe Ruth, for whom children stay alive because of his promises: "Hero worship, okay? That child stayed alive because of Hero Worship, and that's what I'm doing"). Yet he calls those who are disabled 'half a human' and Bill and I live in a 'Steel Cage' (his term for a wheelchair). When asked , 'Is that how you REALLY feel about them (those with disabilities)?' (an interesting 2 minutes)
His reply, "They can't run with me down the hall can they?", and in the stunned silence of the interviewer he continued, "In TRUTH..aren't they left with half (of being a human)? If there is a degree of measurement, are they whole (humans)?" This is where Jerry Lewis seems to talk about Eugenics. Are those with migraines 9/10th human?
Was Bill at 77, happily enjoying his harem of women to converse with weekly, and yes, maybe loving the breasts too, but happy, and kind, and generous. A success story? Or half a human? To me, Bill was living a good life, and the life he wanted. What was my life? Bill wanted to know. Writing, I told him, but thought later how I didn’t send postcards until I got disabled, indeed, I didn’t reach out much once I got out of the social edges.
Jerry's has a harsh response to criticism from a group who USED to be poster children for his telethon: those shown as dying, as to be pitied. Now these 'Jerry's Children have grown up and say, stop making us out to be things to be pitied, we don't NEED a great white able bodied hope who put himself forward as the only one who cares (even to being nominated for a Nobel Prize). Jerry's response was to threaten to take away their wheelchairs for complaining.
Or as he said in the linked clip, 'what do I care about them (ex-Jerry Lewis Poster chidren)'. He explained to the interviewer, "When 100 million people are watching me and thinking what I do is okay I can't worry or dignify (them)": the now adults, children who were used as poster children for MDA. His stance is that if able body people agree with him that the disabled are 'half a human' and wouldn't survive without Jerry, then he doesn't want to hear from those he is fundraising for, or even used TO fundraise. And if they complain, take away that 'steel imprisonment' in which they live (gee, INDY gets me places, but isn't my prison or my guard). As to being disabled, Jerry told Vanity that if he was, he would 'kill myself'.
In choosing that point of view, or Bill's, I think I'll go with Bill. After all, nice breasts to stare out, and good company isn’t a bad life to live. I guess they would be hunky boytoys for all the hetero gals out there. Basically, to Jerry, I 'Don't' do life, while to Bill and those at the swap meet, I 'Do'.
At the swap meet, still thinking myself as human, I bought gifts; books to send, a goth top for a teen known only by email and laminated posters for other onoline friends.
But I also got gifts: a sleepshirt from Bill, some extra posters, a cloth woven carry bag and a new outlook, a view to look at until I can look out my windows again. Yes, a woman let me look in her old viewmaster which had 3-D mix of superheroes and Canadian ‘wonders’ from spiderman swinging in, to a bucking bronco in the Calgary Stampede. You can see that it totally gave me the ‘WOW!’ factor (and that I am completely overheating, my face and arms bright red).
The woman said she got it, and was going to give it to someone but after seeing my natural reaction (“I did NOT have my mouth open!” I told Linda. She insisted I did, and was like a little kid), she knew that I was the ‘right’ person. And finding that I would keep it by the computer to have something too look ‘outside’, that made her certain. Bought a gift waiting for the right person to come, she sounded like me. We traded names of Blogs, and what we ‘Did’.
It took me three weeks, with my poor health to get there, but it was pretty cool, interesting people, interesting stuff.
The location, in Fernwood was surrounded with what Linda and I call, Ukrainian colors. This is because she come from the prairies where after World War II, groups of people from various countries were given land along the train line, so while she grew up in a town which spoke German (is dry, no alcohol, thus no prom, and had a typical 1938 German school day), there are within 10 miles, a French speaking town, two more French speaking towns twenty minutes away, Old Mennonites (Prussian and Paraguay), Russian, and Ukrainian towns.
From her married in relations and community, Ukrainians like bright colors, BRIGHT colors, so when we saw a house like this, it felt we were right back in the Prairies.
When Linda moved away, her ‘setting up home’ presents fell into two catagories, those that could be used, and those that glowed in the dark, which were put in a separate box. Even now, Linda will say, ‘oh don’t worry, that’s a Ukrainain towel/blanket’. This means, it is wild and not to her taste and not something she is too worried about getting damage as it is functional, vivid colours but functional. Fernwood, is reported to be an area of artists now, and still has lots of old houses, and the kind of old group housing houses, complete with the VW bus in front (one guy turned his car into a hot tub for reasons still unclear) which I remember from the time I lived there after arriving from Gettysburg, PA to go to university.
Our house was a lot like this Edwardian multilevel, which had 12 boarding rooms. I went there because I could afford it (just under 100 for a month) and though not as well painted as this, I was next to the kitchen and the bathroom. In fact, what I was paying for wasn't a room but the pantry off the kitchen, shelves removed. My room was 8 feet by four feet. I had a bed, and a door out. While it was small and unusual, it didn’t seem that odd during daylight when my grandfather inspected it and said, “Are you SURE?” as grandmother said I couldn’t stay with them and this was mixed gender and I could afford it.
It turned out the rumors of drug use was true in Fernwood as the next room over, the guy was growing pot plants, and on shaggy guy who had a live in girl when I arrived, earned his rent by selling magic mushrooms. Perhaps this was the when I had the path split: I COULD have enjoyed free love, candles and drugs (though I don’t remember lesbians or bisexual around, mostly just horny stoned guys). But since I was trying to go to uni, and work a full time job AND get home before the sun set (since that was not the place to wander after dark). Getting food was hard as our communal kitchen was often being used to prepared drugs, including preparing the pot buds, which took over the sink for three days, so no spaghetti! I was oft invited and started running out of excuses to avoid going in the 'vehicle hot tub' which I think didn't know the word 'bleach' and had hosts of STD's (maybe this was one of those places you COULD get herpes from a hot tub?). So it was time to move.
While there are lot of great houses, with lovely colours, and rightly should be heritage houses. But I am not sure if they are registered as Fernwood is one of the ‘lost’ areas of Victoria, not an area anyone thought of 'preserving' despite age. With a town hall, theatre, pub, and center, all within walking distance of town, and on the way to both the jobs at Hillside and the University, Fernwood is fortunate it hasn’t been discovered, bought up and turned into condo developments.
The place is full of character homes as well as parks, little pathways and green spaces, but also, and this keeps the price down, DRUGS, lots of them. I heard from a tenant, after I left the panty ‘room’, a month or two later the house was raided, perhaps due to one tenant there going from house to house looking for drugs when his supply ran out. There are, spaced between the restored and painted Edwardian houses, squats and shooting galleries. Unlike the UK, squatters are not legal nor can then get rights to the house (in the UK, you can even get on a list, or get a list of places that are open for squatting, and if you stay for 10 years, you OWN the building). Here, it is criminal vandalism, not that I haven’t had to squat (live) myself in unheated, no bathroom bits of roof and floors. Thank goodness for university bathrooms and showers and McDonalds, eh?
But one thing that Fernwood does is expand your mind, one way or another. This trip it was trying to navigate the streets, as the one ways, dead ends, and tiny streets is another reason adding lot of cars and condo’s is a bad idea. As Bill put it, “We are in the Center of a Maze!” True enough and often we would be blinded, while lost trying to find the entrance and street by yet another building blowing our limited color scheme and brightness ideas wide open. This is only a fraction of the buildings I took pictures of, or asked Linda to, all within a two square block radius.
Suddenly, I have the urge to get some glow in the dark forest green, eggplant purple and banana yellow and get decorating.
1 day ago