Monday, March 28, 2011

Victoria B.C.’s lost suburb: Fernwood & ‘What do you Do?’

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.


Matthew Smith said...

Does Jerry Lewis own the telethon brand or something? In this country (the UK), if a TV presenter said the things he said about those who criticised his methods, and by extension about people with disabilities generally, he would have his contract terminated within a week.

A few years ago the manager of the England football (soccer) team, Glenn Hoddle, was sacked after saying he believed that disabled people had karma stacked up from a previous life (which is the standard belief of at least one branch of Buddhism). How does Jerry Lewis get away with it?

Elizabeth McClung said...

I think because he is an 'institution in fundraising' - I would be like the Channel 2 'Children in Need' making comments about these kids being only half human, are they going to sack the main broadcasters? The Jerry Lewis Telethon has been going on for 40+ years and telling those with Muscular Dystrophy and other Muscular issues that they will die (even when the prognosis is not that) - by targetting the children, 'send this poor child to camp...while they still live' - and most people still see disabled people as pathetic and pity worthy so those disabled who say 'hey Jerry, you are kind of like a child pimp, using children in order to make money' and 'if this is for us, how come 60 years on, no one has the slightest idea about the specifics of our disease or is further educated?' as ungrateful, and not 'true to the spirit' of Jerry Lewis. How he got nominated for a Nobel Peace Prize AND got a special Academy Award for his fundraising work (despite that those with MD were outside protesting AGAINST him getting the award). I dunno, I guess those who did the investigating felt the same way - like getting knighted for founding a string of charity shops that have an 89% administrative costs (for the UK, in Wales, two shops were noted for having over 94%, and owned by two brothers but I don't think any legal action was taken against them - one of the charity shops was on the high street in Cardiff).

Matthew Smith said...

I don't know about the situation with the charity shop in Cardiff, but high street rents and overheads are staggeringly high in the UK right now (much as property prices are generally), so if a charity has a shop in a town centre then either the sale, or the charity's own funds, will be paying the shop's rent. That said, I can't think of any charity shops in the town centre here in Kingston (which has a lot of upmarket chains) but in New Malden, an outlying town with a lot of non-chain and Korean ethnic shops (and a few high-street chains), you'll find a few charity shops as rents are cheaper (though not *cheap*). My guess is, it's just not a very efficient way of raising money these days, although there are some downright scams and some outrageous profiteering as well.

We have telethons here (like the BBC's Children in Need which was recently on - ITV's version was axed in the mid-1980s, partly as a response to Piss on Pity but partly because Thames TV, which ran it, lost their licence when they fell out of political favour). It's not targeted at one charity, and the UK's Muscular Dystrophy charity has a narrower focus than the USA's anyway (it doesn't handle motor neurone diseases like ALS for example). I don't think any presenter here is bigger than the programme (as Lewis perhaps is) and any scandal would get someone kicked off, at least temporarily.

Aviatrix said...

I love the colours. Now I want one of those houses!

Noisyworld said...

Can I suggest the motion that morons are 1/99th of a human and should get a taste of their own medicine?!
Okay, so I'm anti-euthanasia even for people who use people for their own ends :/

I think in the UK, as there were far fewer channels for a long time
and they had quite strict broadcasting standards, the charities have always been stronger than the presenters when it comes to telethons. Though Terry Wogan is a national institution lol

Was the "panty" room intentional or a freudian slip?! (Just above the boarded up house photo)

wendryn said...

I love the colors on the houses!

I have disliked Jerry Lewis for a very long time - growing up around active, intelligent, capable people who happened to have disabilities, Jerry Lewis' attitude was toxic. No one liked him. Still don't, for that matter.

I'm glad you got to be around better, more interesting people who understand about not stepping on other peoples' words!

Raccoon said...

the paint jobs on the houses remind me of some that I've seen in San Francisco. I went to Virginia City and Gold Hill, Nevada, once, and remember seeing similar colors.

Jerry Lewis... tugging at the heartstrings with the "poor children" routine. He says what he does because he believes it. This is what he grew up being taught, what people growing up in the 50s and 60s were being taught. That didn't really start changing until the Vietnam war. There is a saying about old dogs and new tricks...

The swap meet looked kind of cool. And they never had a doubt that you do something.

Neil said...

Well, I just lost ALL respect for Jerry Lewis. Thanks, Beth; I didn't know anything about his telethons, though I did know he had them.

Gorgeous colours in those houses!!

What do you "do?" You inspire and educate people. You did so as a university professor, and you do so now in your blog. That's why I'm still here (well, that and you're just a wonderful person).

Love and zen hugs,

Matthew Smith said...

Up until the late 1980s, we did indeed have far fewer channels here in the UK - most people had four terrestrial channels (BBC1 and 2, ITV and Channel 4 - that was only introduced in 1982). The satellite channels and cable TV started appearing in the late 1980s. Perhaps some people had foreign satellite TV. But if you wanted something seen, it had to be on one of the big four, and they were heavily regulated and still are.

But, regulators wouldn't push someone off TV for something they said when they weren't presenting. Public pressure would, though.

I don't accept the "old dog, new tricks" defence - we're not dogs, after all, and reacting to criticism like that is just a sign that he was an ignoramus to begin with. Then again, the fact that the programme was so personal to begin with (we don't call them "Terry's kids" over here) meant that the campaign against the telethon ended up being personal as well, which may well partly explain his reaction, but it doesn't excuse his attitude.

Kate J said...

I don't know who Jerry Lewis is (well, I do now but only because I googled him...) but those people you met at the swap-meet sound a lot more real and alive than some two-bit celebrity. Glad you were able to meet up with them! Matthew made some good points about disability and UK fund-raising, so I don't need to repeat them. Charity shops here serve two purposes, first is to raise money for the charity, and very much in second place is to offer 'thrift' goods.

And I loved the photos of the colourful houses - immediately reminded me not only of time spent in Eastern Europe, but also of my visit to Winnipeg a year or two back, when I saw a lot of 'Ukrainian' houses. :)

Glad to hear you got out, met some good people, bought or swapped some cool stuff...
love & peace

Baba Yaga said...

As so often, the company of one's peers is refreshing.

The odd thing is that other people define 'peers' on externals, but it's actually very significantly internal. If you regard me as a peer, and I you, we're peers, no matter how different our externals. If we don't, then no amount of externals can make us so.

Jerry Lewis (whoever he may be, apart from a benighted bigot) has no notion of what he's missing. Or causing others to miss...

The paintbox houses are a delight.

Christianne said...

The pictures of the houses are amazing, Beth--thank you for sharing your outing with us (what "half a human" would be that thoughtful, I ask you?!),

Elizabeth McClung said...

Yes, that was this last Sunday. Which was not a bad day, I guess.

tinarussell said...

Aaaaaaghhh, I’m so tired of that condescending shit from people like Jerry Lewis. I have a friend in assisted living who’s being given that treatment; I’m so angry, I’ll bitch about it to you in an e-mail later, I so so so need to vent.

It is a wonderful thing to have people assume you’re not just a charity case or something. I remember going to a queer-focused summer camp once (I was 16 or 17, I think) and having people asking and praising me about “what I’m doing”—but they always meant being transsexual, not any of the things I’m good at like writing or drawing. It made me so angry; I felt invisible, reduced to my trans status. Everyone thought that they were so accepting, too. I broke down in tears at one point. I never went back to that camp.

Lene Andersen said...

Jerry Lewis makes my blood boil.

Rent Toronto said...

Well written story.I like the pictures very much of the houses.The houses are looking so beautiful,I wish I could live there.