For as long as I can remember, I have been the worst case scenario.
When I was growing up, there weren't a lot of options in terms of treating RA or JRA (now called Juvenile Idiopathic Arthritis). And when I say there weren't a lot of options, I mean there really wasn't more than one, maybe two. There was gold injections and there was prednisone and although prednisone was used when things got really bad - as it did for me when I was 12 and my JRA went systemic and almost killed me - the goal was always to get off of it.
Throughout my childhood, my parents were the ones who helped everyone else in the loosely organized support group for parents of kids with JRA, because I was the poster child for how bad it could be and that meant they knew more than anyone elsse. I was the one for whom medication either didn't work or caused side effects that meant I couldn't take it. I was one whose body was so screwed up by age 14 that I spent a couple years in a hospital bed waiting for hip replacements because my hips had fused and I couldn't sit anymore. When I did get the surgery, the goal wasn't to get me walking again. It was for me to be able to sit in a power chair so I could get out of the institutional setting and go home.
They say that if you get RA today, the chances of you ending up in a wheelchair are miniscule and in that way, I'm still the worst-case scenario. The one that people look at and shudder in fear that this is possible, that this disease can wreck you this much
And then there was another flare in 2004, another big one, another fire in my body that almost killed me. But this time there was another medication that worked and one that I can keep taking. A drug that gave me back my life and then another one like it that gave me back even more. Gave me the opportunity to pursue a lifelong dream, to build the life I always wanted to build and now, five years later, I am even somewhat successful at it. After 40 years of being the poster child for the worst that can happen, I find myself in a most unusual situation. Because now I seem to have become the best case scenario.
It is a concept that people find surprising, even confusing. They look at me, at my deformed joints, my restricted movements, the high levels of chronic pain, the wheelchair and all the rest and see only can't. See only the surface and assume the worst. But I am the worst-case scenario and the best case scenario, both at once, overlapping, shifting in and out of focus like a mirage depending on your perspective. From where I sit, this is not worst. This is best.
And there's more. For as long as I can remember, I have lived Under the Shoe. Lived with the knowledge that it could all change in a moment at any time. Lived with the undercurrent of dread that maybe tomorrow, the meds will stop working, the RA will come back and take away my life again. Nine months ago, I wrote about a shift in my thinking when I realized that for five years, I'd been doing well on Biologics and I dared to take the leap and believe that maybe, I could hope for another five or more, could stop living entirely in the moment and start planning for a future. It was a big shift, a scary shift, taking this step into having faith that the thread that held the Shoe would be strong enough.
But there is still more.
Earlier this month, I mentioned a forum about RA and I was there last Thursday, listening to Dr. Ed Keystone talk about RA in the past, in the present and the future (I’ll put up a link when they post the webcast, he's a fantastic speaker). Although I've known it in some way through my work on MyRACentral, it was this speech that made it all click on a personal level. I came close to tears more than once throughout Dr. Keystone’s speech and it took me a while to realize why.
It was because his talk about the options that now exist, the nine Biologics on the market, the more that are coming and other types of meds still in testing gave me hope. And not the kind where you close your eyes, cross your fingers, base it on nothing but desperate desire. Now there is the kind of hope that is based in fact. The fact is there should the Humira stop working - this is terrifying to say out loud, so please everyone, knock something wooden for me - I have another seven options with more to come. And there is actual and real possibility - probability? - that should the RA come back and try to take my life away again, my medical team and I will fight back with all the weapons available to us and for the first time in my life, there are many. Which means that it will be more difficult for RA to entirely steal my life again.
For the first time in my life, the deep undertow of dread that has shadowed my days for as long as I can remember does not lead into a bottomless abyss. For the first time in as long as I can remember, hope is not a matter of blind faith, but an entirely reasonable notion.
My semiannual three-month obsession ended this week when Jennifer Grey and Derek Hough one the 11th season of Dancing with the Stars. Last week, there was a huge controversy when Brandy got voted off instead of Bristol Palin. And sure, Brandy was a much better dancer than Bristol, but aside from the audience probably relating to Bristol better than to the professional performers, I have a theory why Brandy got voted off. Because last week, we saw Brandy in the confessional booth talking about how much she wanted to be in the finals and added it was because "and I say this humbly, we deserve to be there". And I said to the TV - because sometimes, I talk to my TV - "and honey, that's why you're gone". She then said something similar in an interview published the next day: " I’m so proud of me and I say that humbly ". Saying something proud and then claiming you do so humbly is impossible. It's an oxymoron. It seems fake, makes you sound like an arrogant arse and it's completely like that insane statement of someone saying something really mean to you and then following up by "no offense intended". Of course it's intended! And of course she's proud of herself and y’know? It's okay to be proud of yourself, but when you add that humble thing right after, you end up aggravating people.
And speaking of dancing, ever heard of Dance your PhD? In quantum mechanics. Whoa…
Also this week, Prince William and Kate Middleton finally got engaged. I read about it in an article in the Toronto Star where they naturally find some way to work in Princess Diana, mentioning how people "of a certain age" will remember watching her wedding. Which made me cry, because that means I’ve now joined the Of a Certain Age group.
Just watched a documentary called Are We Digital Dummies? and it's great. Informative, thoughtprovoking and in general terrific. Watch online.
And for the disability part of the Random …
Remember last year when Abercrombie and Fitch got in trouble because they did sent an employee to the back to work in the stock room, as using a prosthesis was not part of the accepted wardrobe for staff? Now they're not allowed to wear poppies for Remembrance Day, either. Our that the mall last weekend went by an A&F store for the first time, briefly considered going in and then remembered their treatment of an employee with a disability. And didn't shop there (although I was tempted to pop in and tell them why I didn't shop there first). I urge you to boycott them, too.
As an aside? Check out that article about the young woman with a prosthesis. Apparently, she was initially told that it was okay to work in the front of the store, as long as she wore a cardigan! To hide her prosthesis. Excuse me while my head explodes and masses of confetti in very angry colors float about the air.
And speaking of angry confetti, someone left a comment on my post about discrimination, telling a story that is best quoted in their own words: “So right. I still pass for able bodied. I was walking somewhere at work a few days ago with another employee. I stood and waited for the elevator. Don't be lazy! she said, the stairs are right here. Explained stairs are not an option. Confused silence. Then this: so how come you're still allowed to work here?” Every time I look at that paragraph, my blood pressure rises about 30 points and 17 different ranty statements trip over themselves in my head. WTF?? This kind of attitude is still out there? Well, obviously or there wouldn't be discrimination, ridiculously high unemployment rates, etc., but seriously? Someone would actually say that? Out loud? To the actual person?? Every now and again, when I think we've taken a step forward, I see proof that is going backwards instead.
And one last thing. On behalf of my shoulder and those of us who have trouble using a keyboard, might those of you who have word verification on your comment section consider removing it? It can make it harder for readers with a disability to leave comments on your posts. Unless of course you've been assailed by spam.
Happy Thanksgiving to all you Americans out there! I am thankful that so many of you are civilized, informed, tactful and filled with common sense.
When I go to ultrasound, I have to prepare to lose three hours of my day. The actual appointment is about 20 minutes, but when you involve WheelTrans, the parallel accessible transit system in Toronto, you need extra flexibility. Lately, they seem to have engaged in some sort of internal competition about just how much they can mess with my day. Last week, I got to my appointment an hour before I had to be there, but yesterday? Let me tell you about yesterday.
I called the morning before, requested for a ride to arrive about 5 min. before my 11:30am appointment. I get a ride with a pickup between 9:50 and 10:20 -several years ago, they created the concept of a pickup window of half an hour, which allows them to accommodate more riders, so in theory, it's good. In practice, it's kind of aggravating. My estimated time of arrival yesterday was 10:20am. An hour before I'd asked I have to be there. The way it actually worked out yesterday morning was that they picked me up at 9:50 and I arrived at 10. It's a 5 min. ride and I take it because walking both ways would put more strain on my shoulder…
By the way? When I talk about 'walking,' I use a metaphorical sense of the term. I perambulator by pushing the joystick on my power chair and don't actually walk, but substituting 'roll' is just too agonizing. Just wanted to clarify that. I once got a comment from someone who was supposedly a WheelTrans driver asking why, since I could walk, I didn't get off the service so someone who really needed it could get a ride. Sigh. Oh ye of little imaginations…
So there I am, sitting in the waiting room a full hour and half before my appointment and although I had a book, I was annoyed, so instead I started thinking about Disability Time. You don't find it mentioned much in Google in the way it’s used in the disability world, but maybe some day, it’ll make its way into search engines. Disability Time refers to the way in which most things take much longer when you have a disability. There is personal Disability Time, as in it probably takes me double the time to make a cup of hot water in the microwave that it would you and then there is the Disability Time that's imposed by others and there are a couple of those. There is the Collateral Damage version, an accidental consequence such as the three hours out of my day if I have to get a return ride from WheelTrans to a clinic that’s a 5 minute drive away (which given the season is probably imminent). And then there's the Bureaucratic Disability Time in which a huge lag time is built into a bureaucratic process. For instance, if you are on ODSP - the social assistance for people with disabilities in the province of Ontario - and your wheelchair needs repair, you need to get a quote to give to your worker, who will then get the quote approved and by the time you get your repair, it's a week later. Seriously. What happens to your life in the meantime? Well, nothing really. But since you're on ODSP it's not like you actually have a life, right?
Being a person with a disability is a full-time job. Many of the requirements of this job are related to the ability to sit around and wait without losing your sanity.
Her name's Lexie and she can do everything. Well, except intimidate Lucy, who adopted the big box the minute it entered the house. Lexie's an early Christmas present from The Boy and this officially makes him Best Boyfriend Imaginable. I am now a writer who can print, copy, fax and scan - with a sheet feeder! You wouldn't believe the excitement...
After playing with Lexie, we went to see Mazowsze, a Polish folkdance group (video here) so I could get immersed in part of The Boy's cultural heritage. It was amazing and I had a blast - the costumes were incredible, the dancing wonderful and the singing was beautiful - I've no idea what they were singing about, but it sounded good. And then there were the yips - exclamations by the female singers to express... erm... encouragement? Excitement? Well, Janet called them yips. I think they sounded more like a mix of Lucy when she's excited and a hungry velociraptor - watch the video and let me know your interpretation.
And yesterday, it was time for the annual Christmas Seaon Harbinger: the Santa Claus Parade and everyone were very excited
Participating in the parade is a family event
There were skunks, princesses and really weird floats
Mascots and really big instruments
The only thing better than a man in a kilt is many men in kilts
Don't know how they did it without losing appendages - it was cold. Mor bundled up
And so did I
Photo by David
I am now persuaded about the usefulness of hats - without it, I would've been an icicle. Now I just have to figure out how to put it on myself - a bit of a challenge when your shoulders have limited mobility.
The last couple of years, watching the parade has become a competitive sport with people being remarkably unconcerned with blocking others' view. This guy looked straight at me and went ahead anyway
But no matter. Finally, the guy we were all waiting for arrived
I was in the middle of reading The Girl with the Dragon Tattoo and explaining to a friend why I was having such a good time. Aside from the story itself, there was so much about the way it's written, the interpersonal dynamics, tiny little moments, as well as big ones that were incredibly familiar and felt like home.
It's taken me about five months to finish the Millennium Trilogy - The Girl with the Dragon Tattoo, The Girl Who Played with Fire and The Girl Who Kicked the Hornet's Nest - and mostly because I took a bit of a break between each, to sort of cleanse my palate. It didn't take long before I needed to dive back into Stieg Larsson’s universe, though and I’m sad it's over. There are certain kinds of books where you can only have the experience of discovering them for the first time - well, obviously this happens with all books, but with some, it's such a profound experience that even if you read them over and over again, you will always miss that first frisson of knowing you are about to be sucked into something completely different and exciting.
By now, you probably know the basics of the story, may even have read the books yourself, as they have been ubiquitous in the on popular, so I’m not going to go into too much detail. Our main characters are the hacker Lisbeth Salander and Mikael Blomkvist, the journalist and over the three books, it becomes Lisbeth’s story, as well as the story of the many ways in which misogyny plays out in our world. I find it fascinating that these books that so brilliantly hangs out the many different ways that men hate women - the original title of the first book is Men Who Hate Women - became so ridiculously popular. That's part of me that wonders if they would have had the author being a woman, but we probably all know the answer to that question, so moving on. However, I think it would be a mistake to pass too lightly over the fact that Larsson does explore misogyny on personal, corporate and social levels and how it is expressed in violence against women, discrimination and condescension and he manages to do so while entertaining you. I remember reading a review of the first book and in a comment, someone made a remark along the lines of "there sure seems to be an awful lot of violence against women in Sweden." I sighed and found it very difficult not to leave my own comment, suggesting that the person look into the statistics about violence against women in North America. It’s telling – the concept’s used so much in popular entertainment (such as Law & Order: Mutilated Women’s Unit – yet there’s surprisingly little awareness of it.
Larsson was a journalist and it shows in his writing style. He writes in such a methodical, nonfiction style that the story reads as real, which is aimed as part of its appeal. He also breaks one of the cardinal rules of writing: show, don't tell. The first book starts with a long description of corporate crime that is necessary for the rest of the book to happen and I remember being captivated by it from the start. It is such a different style from North American writing, where thrillers start with a bang and keep going at a breakneck pace, showing what happens as we go along, not allowing for long conversations, long expositions and is one of the things that felt so Scandinavian and made the books so compelling. It took it's time, it was practical, some might have called it plodding and breaks all the rules of the traditional North American thriller template where everything happens very, very quickly and never lets up. The Millennium Trilogy is completely different - yes, a lot happens and yes, a lot of it is nailbiting, but in between, it very much happens in your head. Larsson also managed to pop in a number of fascinating facts about things other than discrimination and violence against women, such as one that just blew my mind. Apparently, international law prohibits the use of expanding bullets in war, because with expanding bullets, death is pretty much guaranteed. Huh??? So it's more sporting to leave soldiers with a bullet wound they may be able to survive? It’s one of those things about honour in war time that is a complete oxymoron, but fascinating.
And then there's the way the books felt like home. I thoroughly enjoyed the translation - not because it's good, although it is. One of the things I found so very charming about the translation is that it is clearly done by a Swede. First, it's translated into British English, because that's what we learn in school in that region of the world and second, there are times where the translator has been a bit iffy about switching idioms, ending up translating something fairly directly. I know enough Swedish and it's generalizable to my Danish experience, so there were many moments of chuckling. Then there are the expressions that although translated correctly don't really make sense in English. Take “practical pig.” This expression is used to describe somebody who is incredibly practical and it lifted straight out of comic books - Disney, I think. When I was growing up, my dad would bring home the Donald Duck magazine every Monday evening - it's the weekly collection of stories featuring Disney characters, and something I've never seen over here. Some of the stories feature the three pigs and continuing quest to avoid the wolf and practical pig is the smart one who built this house out of bricks. And then there are the little social quirks. Take all the coffee. Every time someone visits someone else, they're offered coffee and it happened so much that by the end of it, you're jangling with vicarious over-caffeinated nerves, but I remembered as well that back home, you get coffee in cups, with saucers and a spoon, so you can drink more of it without losing the ability to blink.
I've also been collecting the movies. I got the first one and can highly recommend it - but don't watch it on so after you read the second book or it will ruin a certain plot points for you. I've yet to have time to watch the second one, but it's lying next to my TV and I can't wait. There is this thing that happens when I watch Danish movies where for a while afterwards, I think in Danish and speaking English becomes a matter of translating from the Danish instead of speaking from the place in my head where English lives. Lucia once told me it's called code switching in linguistic circles. And I sort of experienced that watching this movie, except I can't really speak Swedish. I recognize much of it, know many individual words, but it and Danish are different enough that if a Dane and a Swede get together, they tend to speak English to each other. So I was in a bit of a pickle, because for a while there, I was in the place of my head where English is an effort, yet had switched to a language I don't really speak. It didn't last long, but it was confusing while it did.
And then there was this moment of intense homesickness. In one of the very first scenes in the first movie, Henrik Vanger is opening his annual gift of a pressed flower. This older man sitting by his desk, wearing a grey, hand knitted cardigan in a room that is built and furnished in a particular way and you can pause the movie and there is this one frame that is so quintessentially Scandinavian that my heart hurt and for a while after, everything in my regular world looked slightly wrong. It's amazing that even after almost 30 years, you can still get knocked sideways with homesickness.
If you haven't yet, do yourself a favour and get the books and then watch the movies. And don't wait for the American version, get the original.
I did an interesting interview with one of the otehr Community Leaders at MyRACentral this week:
"Depression can be a normal part of living with rheumatoid arthritis. Whether it is depression that comes attached to a diagnosis or the worry and sadness that accompanies a flare, chances are you may become acquainted with this state of mind. The topics of depression and suicide prevention have previously been covered on MyRACentral by both Lisa Emrich and myself. Today's interview with Merely Me, the Community Leader on HealthCentral's MyDepressionConnection rounds out our discussion about this important topic."
Thanks to everyone who left a comment in last week's contest, three quarters of you voting for Wish Upon. Thank you also for giving me this moment of publicly telling a certain someone that I told you so. Which is not to say that I don’t like Christmas Come Again, I do – I like its intense Christmasness – but I figured the other would be more versatile. I have obediently changed the packs around in the shop. And speaking of winners… I messed around with a random number generator and the winners of the calendars are comments #3 and 12. Congratulations kallajer and deb bennett! Contact me at landers5ATgmailDOTcom with your full names and addresses and I'll get the calendars to you right away.
The other day, I saw a bit advertising an upcoming story on one of the local news shows. Called Everyday Hero - which leads me to believe it's a bit of a series - this particular episode was a portrait of a woman with MS. The woman is a wheelchair user and her MS has affected her enough that she can no longer use her hands. You also saw shots of her painting with a paintbrush held in her mouth (the painting was really nice). In voiceover, you heard the woman say "I had a choice, I could sit at home and mope… I have MS, MS doesn't have me… "
These are not words we haven't heard before. They are words I've said myself, words almost any person who has a disability has said before, privately, publicly, on inspiring snippets on local news shows, in books, magazines and you get the point. And this post isn't about those words specifically or the woman in the profile – it’s about how I finally got it. Not just intellectually, but emotionally, thoroughly and actually grokked it.
I got why these incredibly annoying inspirational profiles persist, I got why random strangers tell me I'm courageous, I finally understood.
I always thought it was ridiculous. Thought that people didn't quite understand what courage is. Running into a burning building when everybody else runs out is courageous. Running towards the sound of gunshots to save a life when everyone else runs away makes someone a hero. Making an active choice to do something that puts yourself at risk is the definition of heroic and courageous and deserves an inspirational profile. But getting up in the morning? Getting dressed? Going to school? Having a job? Having hobbies? How is that courageous? Sure, there's the option to sit in the corner and rock, but that's only amusing for so many years - sooner or later you have to move on. But moving on, in my opinion and in the opinion of most of the disabled people I've met, does not constitute the kind of active choice, of putting yourself at risk that make someone a hero. If the choice is between life and rocking in a corner for decades, it really isn’t much of a choice, is it now?
So I looked it up, because I’m a word nerd. Courage is defined as "the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.” A hero is “a person who, in the opinion of others, has heroic qualities or has performed a heroic act and is regarded as a model or ideal:” There's a handy example: "He was a local hero when he saved the drowning child.”
And it all started to come together. The profiles, the admiration, the statements that people would kill themselves if they lost the ability to walk, an assertion I've always dismissed as lack of imagination, but now understand in a different way. The click in my mind that connected that to the undertone of amazement that a person with a disability would adapt and go on with their life. It's as if there's a sense of awe that someone would face difficulty or pain without being curled up in a corner, gibbering in fear and how this bestows upon the person a regard as being a role model. Because it is apparently inconceivable to the able-bodied that it is possible to have a life while not being able to move your body the way the Abs do. Inconceivable to the point that there is this weird sense that disability conveys an alienness, an otherworldly not quite personhood.
Here's another thing that makes me sort of squirmy, pushing the discomfort around people like me to the point of us being seen as not being quite human. Does that sound like an exaggeration? Then why is it okay to physically modify a girl so she won't grow, hastening a death in order to harvest organs, publicly advocate the killing of disabled children, accept an unemployment rate within the group of up to 85%, call hate speech mean instead of the name it deserves and if you have a couple of weeks, you can go through my archives for other loathsome examples.
It's not just a lack of imagination, it is an actual inability to accept the fact that life can still be life if you can't walk. An unwillingness to look at your own history of rising to a challenge and conceding that in a similar situation it would be possible you'd continue to be interested in anything but death. An unwillingness and inability so profound that there is only one thing for it. Awestricken admiration that someone gets up in the morning.
Two pieces of information before I get going. First, the contest to win one of two 2011 The Seated View calendars is open until 6 PM EST on Sunday. And second, if you live in the Toronto and vicinity area, there's a really interesting public forum on Thursday, November 25 called The Most Exciting Time Ever in the History of the Treatment of Rheumatoid Arthritis (surprisingly, with no exclamation marks). For more information on the forearm and on how to sign up, go to the link and scroll down to the fourth item. And now, back to the regularly scheduled program…
Before, the pain was with me always, coloring everything I did. Before, my shoulder, neck and back were tight, always, clenched into a fist that never let go. Every movement was accompanied by hurt, everything I did had its own soundtrack of pain, sometimes not too bad, just loud enough that I was very aware of it, sometimes blaring, at the forefront, in my face, so much that I was surprised the rest of the world couldn't hear it. Putting a cup in the microwave hurt, cutting a piece of lemon hurt to the point of reconsidering whether I should add lemon to my home water at all, making lunch hurt and so did petting Lucy, brushing my teeth, lifting a glass, crossing my legs, going to the grocery store, writing notes, pressing the buttons on my phone and now that I think of it, sitting still and reading a book.
Only a month ago, I was seriously considering having to stop working. Not just MyRACentral, but everything else, as well. Blogging, The Book, photography. Using Photoshop really messed me up, writing really messed me up, browsing the Internet really messed me up. It's why I had to develop the 30 min. rule, got myself a timer that would tell me when to back away from the computer, but even that wasn't working. And neither were the freezing and steroid shots I’ve depended on for so long, having come to irritate my shoulder instead of relaxing it.
And then I was given a miracle. In a moment of desperation, of "don't know if it'll work, but we've got no other options," my doctor gave me a referral to physiotherapy for ultrasound. And after the second 10 min. treatment, my life changed.
For the first time in months (years?), the pain was manageable. More than manageable, really - or should that be less? The fist in my neck and shoulder and back relaxed, letting go of the vise grip it's had on me for so long. The pain was at such a low level that it could be filtered out, be not there and had you asked me, I would have said I was not in pain. I might've been had I thought about it, really paid attention, but I didn't and it wasn't there, had left me alone and I left it behind without a second thought. I moved on and dived into my life with the joy and abandon of a dolphin leaping above the waves and splashing down again. I played with this new ability that let me do what I wanted to do, let me catch up, add new, work harder and longer than I have in months (years?), going to bed every night tired, but the kind of tired that comes from activity. The kind of tired that disappears with rest enabling you to do the same thing all over again the next day. Codeine was no longer for several times a day, every day, but once every few days and then one dose was enough and my other painkillers were cut in half.
I'd forgotten what it's like to not being pain, to not be drugged. Had forgotten the lightness of your mental step, the play of a mind that is unimpeded by pain and by medication and it's quite possible I got a little carried away. I got involved in things, had enough energy to step up to the plate and tilt at windmills (if you will pardon the mixing of metaphors) and I did that in addition to my regular work, plus some extra. It felt like I could actually run the world, actually have an impact. And then, after a couple of weeks of working like a regular person, of being extra - new word alert! - advocacious (as in being involved in advocacy), last Friday, I felt the pain again. Not much, but it was there, so I went easy on myself on Saturday, did some writing on Sunday, went back to work on Monday and when I woke up Tuesday, my old friend pain was back at full throttle.
And I'd forgotten about the pain. Forgotten how pain in one area ripples, spreading to affect everything else. You hold your body a little differently, do things slightly differently to ease the strain on the injured area and by doing so open conduits for the pain to ooze through into the rest of your body. I'd forgotten how it makes everything harder, adding weight to each movement so that lifting my hand, leaning forward, crossing my legs or making a phone call is done while wearing lead weights.
I'd forgotten about the tired. About the pervasive fatigue spreading through every part of your body, making you feel as if you're stuck in treacle. Forgotten how you move through force of will, spending some time thinking about the movement before you do it, gathering strength, gathering will before you can. It's a split second’s worth of gathering, sometimes two, but it is an eternity compared to the effortless, thoughtless motion when you are without this fatigue.
I'd forgotten about the effect on your thinking, your brain moving in a dense, gooey fog, trying to grasp ideas, yet not quite being able to get a firm handle on it.. And when you do sit down to write a blog post,, even to write a chatty note to a friend, nothing is there in between a few concepts, no bridging, no mental leaps, no nimble dancing with a notion, words and phrases tumbling out in a beautiful kaleidoscope. Instead they lumber, their heavy awkwardness dropping onto the page like lumps of misshapen clay.
I'd forgotten. Two weeks without it and I'd forgotten. And that is one of the good things about pain - the fact that once it's gone, the true reality of what it is like to live inside of it melts away like morning dew on a summer’s day and you can go back to your life, stepping around the fear of it coming back. And then it does and you remember and having been without it somehow makes it even harder. I spent most of Tuesday wondering how I ever got anything done with this yoke around my neck and that is the other good thing about pain. That you adjust, get used to it and somehow figure out a way to live your life as much as you can anyway.
I went back for ultrasound yesterday and it helped again, turned down the pain. And it makes me believe that if I had weekly ultrasound treatments, I could keep working, keep living my life, push up against the restricting boundaries caused by this pain. Of course, now that I have found this miracle, it is about to be taken away. St. Michael's Hospital is closing the outpatient physiotherapy and chiropractic clinic, leaving me and everyone else who went there to seek treatment at private clinics. Which costs $50 a treatment and who can afford that? And yes, I will be advocacious again and write the CEO, but I'm pretty sure reversing the decision to close the outpatient clinic is beyond even my powers of persuasion. And I dread what will happen when the treatments have to stop.
I always forget how labor-intensive it is in early November when I make the calendar and holiday art cards, but I don't forget how much fun it also is. Combing through the past year’s photos, trying to find the best ones and then making sure there’s not too much of one kind and not too little of another. It’s one of the tasks that has replaced knitting for me, although with substantially less hand happiness from having soft wool glide through your fingers. Nonetheless, my new baby is ready and unlike a pair of socks, more than one recipient to get their hands on it.
For several years now, I've received requests for prints, particularly of Mystic, but have in a protracted moment of spectacular tech twittiness been completely unable to figure out how to make the image fit the CafePress template. Thankfully The Boy happened to be here as I was wrestling with it and found a solution in what is for me a terribly embarrassing short amount of time. However, the end result is that I have added a couple of posters and framed prints to the shop, primarily of Mystic as it seemed to have become a sort of defining image for me. I don't know what the prints and posters are like "in person," but given that the calendars and cards are very high quality and look great, I expect the prints to look terrific.
One of the new products at CafePress is canvas prints. Any of my images from my Flickr page are available to be made into a canvas print. However, CafePress does not include this in the product you can add to your shop, so this will be on special order. I also discovered Imagekind, which has a couple of other options in canvas prints – canvas and frames – and added Mystic to my shop there, but if you want another image, just let me know.
When it came to selecting images for the annual holiday cards, I hit a bit of conflict. There are two quantities available, 10 and 20 cards, but I don't know which image should go on which card. Right now, Christmas Comes Again
is on the package with 20 cards and Wish Upon
on the package with 10 cards. And the reason I open this window into my obsessive and weird brain has to do with contest.
To celebrate the annual disappearance into obsessive image editing being completed (and me getting my life back so I can obsess about something else), I'm giving away two The Seated View 2011 calendars. To enter, leave a comment with your preference of the two candidates - Christmas Comes Again and Wish Upon for the package of 20 cards (which does not, by the way, commit you to buy any). Contest closes Sunday, November 14 at 6 PM EST. Winners will be selected using a random method yet to be determined and announced on Monday.
Check out my new products at the shop - no pressure to buy, but if you're so inclined, I'd be proud to be part of your holiday purchases.
I've always wanted one of those serenity fountains. You know the kind - maybe there are two small bamboo chutes to guide trickling water from top to bottom or maybe it's a pot with a bunch of rocks and water quietly burbling up in the middle. The only thing that’s kept me from getting one was the thought that various cats in my vicinity might take to drinking aforementioned burbling water, which didn't sound healthy. That and the cost, but it's been on my list of things to get for a while, just as soon as the financial situation got a bit better. Because what could be nicer? The quiet sound of water flowing in the background lending peace to the end of a stressful day. Because you all know how much I like the sound of the ocean and the next best thing would be a wee fountain on a shelf somewhere, right?
In related news, my toilet’s been running for over a week.
Well, that's not entirely true. My toilet’s been kicking up a fuss on and off since the end of June, starting with some trickling noises simmering away, then moving on to running, which was temporarily fixed by a replacement for our building’s regular Super. Which esteemed personage claims to have been attempting to order the necessary part, but has run afoul of the bureaucracy of the housing company. When she finally did get a part two months after the original repair request, it was wrong part and the waiting continued. As there was just mild hissing noises and occasional trickling emanating from the toilet, I didn't care much. Or rather, I have conditioned myself not care much, because that just adds stress and wouldn’t make the alleged implacable bureaucracy move any faster, so it’d be wasted stress.
Last Friday - no, not the Friday last week, the one before that, October 29 - my toilet started running. Quite loudly. In fact, it sounded like a babbling brook had developed in my bathroom, audible everywhere except my bedroom and this was when I discovered that contrary to expectations, having this sound in an apartment well off the ground floor is not conducive to acquiring a sense of serenity. On the contrary - it adds an incredible amount of anxiety and I think I figured out why.
Although my brain knows that the toilet won't overflow, there's part of me that constantly believes it will
There's going to be a flood!
No, the toilet won't overflow. It's okay, that trickling sound you hear is just the water going down that thingy.
There's going to be a flood! I swear, how can anything making that sound not overflow?
It's okay, the toilet is a sort of closed system - not being a plumber, my grasp on the particulars are a bit vague - and it won't flood.
There's going to be a flood!
Take it easy. It's been doing this for months and it hasn't flooded yet, so we're fine.
There's going to be a flood! Can’t you hear it? Why aren't you doing something?? You’re going to wake up with the bed floating just under the ceiling any day now!
Seriously, it's all right. A dozen people have told us it won't overflow, it hasn't overflowed for months, it will be fine. Take a pill, relax and shut up.
There's going to be a flood!!!
And so on. This conversation isn't happening on a conscious level, but going on in a barely perceptible part of my brain more or less constantly. And it's just a tad stressful.
On Wednesday, the Super came by to try to make it shut up temporarily, instead causing the toilet to change from a babbling brook to a constant stream, as if someone were standing over it with an inexhaustible, bottomless watering can and this turned out to be even more nerve-racking. So on Friday, the Super’s day off, I sneakily asked the guy who’d made a temporarily shut up for several weeks this summer to drop by and see if he could do it again. And bless him, he did. Now it only trickles and simmers again and I can only hear that when I'm actually in the bathroom. I was so grateful I even forgave him for calling me 'dear' all the time.
I've been percolating this one for a while, trying to wrap my head around an idea, how to present it in a way it makes sense. Whether I'm quite there yet remains to be seen, but here goes…
It all started with a conversation I had a while back with Dave over at Rolling around in My Head. It was about discrimination as applied to people with disabilities and how the general public at large seem to have trouble connecting with the concept, often laughing at the idea, getting angry that you're suggesting people with disabilities experience discrimination (I know... huh??) or outright denying that it happens. I have illustrative examples to guide the discussion.
NaOnka is one of the contestants on this season of Survivor. Kelly B. was another, the contestant with the prosthetic leg I wrote about at the end of September. NaOnka spent the entire time that she was on the same tribe as Kelly spewing hateful things about her, more specifically hateful things connected to her being an amputee for no apparent reason. She called her a charity case, she talked about throwing the leg in the fire, hoped the leg would fall off during a challenge, assuming that Kelly would use her disability to get by on sympathy and the list goes on. I read recaps of reality shows here and there and often saw people writing and talking about how mean NaOnka is, how she's "allergic to kindness" because of this irrational hatred. And this is where I’d start yelling at my monitor, because it doesn't take a lot of imagination to think about what would've happened if e.g., a white contestant had said equally hateful things about a black contestant. Instead of feeling sorry for the poor girl, the entire North American continent would be in an uproar about the racism. They wouldn't use the words mean or allergic to kindness, but racist. Why has this not been called what it is, namely bigotry? There’s a word other than the more general term of bigotry, it's called ableism. But nobody knows that term, do they? In fact, it's so new a term there’s no agreement whether it should be ableism or disableism, but regardless of which word you use, you're guaranteed to get a blank look.
I know two people who have loved each other for a long time and who want to get married. They're both capable adults, both single, nothing stands in their way. Well, except for the fact that they both have a disability. Because in Ontario - as well as any other province and country I know of - if you are in receipt of public assistance because you are what they so wonderfully called "unemployable" due to a disability, you lose your assistance if you get married or move in with your love. Social assistance also comes with coverage for medication and equipment, such as wheelchairs. Even if you could get a job despite the barriers in education and employment that are huge contribution to the upwards of 85% unemployment rate among people with disabilities, you'd need a very wellpaying job to be able to afford not just the regular expenses of living, but things like medication and equipment (a wheelchair cost $12,000, three quarters of which I paid myself) and all the other expenses that come with having a disability. Essentially, you're forced to stay on assistance even though you'd rather be working. And that means that you're forced to be financially dependent on someone, either the state or your spouse. Everyone can marry here in Canada, even same-sex couples. But people with disabilities are in effect not allowed to marry.
And then there's this story where an entire high school worth of students rebellng against the policy that "kept the names of disabled students off the ballot" for homecoming court.
As an aside, can someone explain homecoming to me? Who is coming home and where have they been? Why is it connected to football and why does it happen so early in the school year? Does the homecoming court have any responsibilities for the rest of the year? I'm very confused.
Anyway! Back to my point, which is all I can think is why? Doesn't the ADA apply to private schools, as well? And who in their right mind would create such a policy? And again, why on earth would they?
The other day, Dave coined an updated version of the word inaccessible when faced with a business center in a hotel that was impossible to get into for someone using a wheelchair (because apparently, it is inconceivable to imagine that we might travel for business). Purposeful exclusion. It's a good one, isn't it? Whether it is refusing to call bigotry by name, creating a policy specifically excluding certain students from school activities or making it impossible for a particular group of people to marry, it is purposeful exclusion.
Did the term make you wince a little? I did the first time I read Dave's post, because it is blunt and in your face and if there's anything people with disabilities are not allowed to be, it is blunt and in your face. I winced and then I caught myself and stopped, instead connecting to the anger within. Because feeling sorry for the poor disabled is not an appropriate reaction when faced with these types of situations, righteous anger is. Maybe if we start using blunt words to describe it, the issue will get the attention it deserves.
It is bigotry. It is purposeful exclusion. It is a question of civil rights.
The holiday theme has started and over on MyRACentral, I write about RA and traveling:
"‘Tis the season. The start of holiday celebrations, for gathering with family and friends and that means traveling. Whether you're driving to the other end of the city, taking the train to the next state or flying across the country, at some point in the next six weeks or so, you'll be going somewhere. Staying comfortable during your trip is an important part of arriving at your destination feeling as good as possible so you can enjoy the festivities."
About six weeks ago, I had a wee rant - well, it wasn't that wee, actually. As rents go, it was a pretty good one. I’d arrived at my local grocery store to find it significantly altered in the name of theft prevention, alterations which erected a number of barriers to accessibility. There was a gate consisting of two bars, the previous two accessible checkout lanes looked like they had been reduced to one, the new self checkout area was hopelessly crowded with people and there was a chain across the only empty checkout lane. Basically, I couldn't get into the store.
Every time I went to my local Metro after that, I felt unwelcome. I thought about it for while and then I decided that posting this rant was not enough. I wrote a letter, enclosed a copy of my post and sent it to the VP of Operations in Ontario, asking if Metro didn't want my business anymore. Shortly after that, I got a call from another VP named Peter who is responsible for this particular store.
Peter was concerned. Very concerned. We had a long talk about legislative requirements, the reality of accessibility, the high number of people with disabilities in this neighbourhood (most of whom shop at Metro), theft prevention, human rights and optics that encourage shoppers to return. And then Peter committed to making a number of changes, namely the following:
The bars on the gate would be put down during the day and back up again at 9 PM.
The clerk responsible for the self checkout area would be instructed to keep a sharp eye out for customers with mobility issues, leaping to assist them with the gate as soon as they entered the store.
The two accessible checkout lanes - there are still two, the second one wasn’t marked - would be clearly marked and one of them would be staffed at all times.
The pinpads for debit cards would be placed at an accessible height in the two accessible lanes.
Peter asked for a bit of time to implement the changes, after which he would meet me at the store to get a better idea of what it's like to be a customer with a disability. That meeting took place last week and we were joined by Chris, the Manager of the store.
And guess what? The changes have been made with only a minimum of wobbliness. The accessible lanes are now marked, I have used the pinpads myself a number of times – yay! Independence! - the bars on the gate has mostly been down during the day, although there have been a few hiccups. We discussed it and Chris made a commitment to adding disengaging the bars on the gate to the 7 AM shift. We also talked about how although the width of the gate met Ontario Building Code standards for accessibility - the OBC does not talk specifically about such gates, but acceptable width to allow passage of wheelchairs in general - it was quite narrow for bigger chairs and scooters, so Peter said they would widen it. We did a walkabout in the store, discussed displays that create obstructions in the aisles - which were moved right away - and while were at it, we talked about other accessibility issues, such as produce being too high to reach easily when you're in a wheelchair. It turns out that produce displays will soon be lowered for aesthetic reasons, which will work well for accessibility, as well. Since then, Chris and I have had a discussion about modifications to some of the accommodations that were implemented, making them even better. As for the gate… it’s still there. It’d be better if it wasn’t, but in balancing theft prevention and accessibility, I think the compromise is serviceable.
And I am very impressed. The quickness of the response by Peter, his openness to discussing this and willingness to make changes speak well for Metro’s commitment to serve all their customers. Through our discussions, Peter also made it clear that accessibility will be a factor in the future and I recommended they include consulting people with different disabilities in store design and theft prevention strategies.
We also discussed the legislative requirements in the Ontario Building Code falling short of anything that is meaningfully accessible and this is the bigger thing in this. Because the changes Metro made to that store were within the standards for accessibility set out by the OBC. It is well known in the barrier-free field that the OBC’s section on accessible design is woefully inadequate and at minimum 10 years out of date. It takes a while to do consultations and to write the thing and by the time it's published, life has moved on and that means new technology and mobility aids. I don't know the specifics of the latest OBC, but back in the days where I worked in the field - which wasn’t that long ago - to deem a building accessible, it basically needed a ramp, an automatic door opener on the front door and accessible washrooms. There was no provisions for what is called a barrier-free path of access - i.e., once you're inside the building, can you actually use it. It sells businesses short. If the OBC lets you down, leaving you as a business owner with the belief that you have made your business accessible to all your customers and you end up doing something that essentially violates the Ontario Human Rights Code, how are you supposed to know that?
Should businesses be more aware of accessibility? Absolutely. We have an aging population, a big hump of baby boomers moving up to the decrepit stage and it makes sense to incorporate barrier free design in your business. It's called universal access because if the building is accessible to people with disabilities, it's pretty much accessible to all, including people carrying boxes, parents with strollers, etc. But we're back to how are you supposed to know. Your primary source of advice is the OBC and it’s inadequate.
I believe that Metro will now look beyond the OBC, shifting paradigm to one of barrier-free paths within their stores and will take a look at incorporating consultation with people with disabilities, as well as disability training for their staff. Okay, so maybe not quite that far quite yet, but they've started down the road and I have hopes they’ll get there. And that is enough to keep me as a customer, enhance my loyalty and prompt me to praise them in public.
This was also a very encouraging experience from an advocacy point of view. Proof that if you speak up, it is possible to facilitate change. There are no guarantees that it will always work in as positive a way as my experience with Metro, but you never know, it just might.