Monday, February 28, 2011

A Night at the Opera

A night out, my first time at the Four Seasons Centre for the Performing Arts

To see one of my favourite operas
Fabulous staircase in the foyer
Everything is light and airy

 So light and airy, it felt as if we were floating
Watching everyone descend this staircase was amazing. It looked, as David said, like a waterfall of people


Friday, February 25, 2011

A Loss of Trust

When people with disabilities are abused, it is most often done by those who provide their care.

Not a pleasant thing to complicate, is it? We like to believe that caregiving is a sort of sacred profession, one that requires altruism and compassion, is seen almost as a vocation. The thought that those who are entrusted with the responsibility for people who are more vulnerable than almost anyone, except children, could misuse that trust, could deliberately harm, makes your insides clench.

I, and many other people with disabilities, receive attendant care in our homes and because of that we are able to live independently in the community, participating on an equal level with those who are able-bodied. In its preamble, the Ontario Human Rights Code talks about it "having as its aim the creation of a climate of understanding and mutual respect for the dignity and worth of each person so that each person feels a part of the community and able to contribute fully to the development and well-being of the community and the Province." In a very basic way, attendant care is a practical expression of that ideal. Independent living - as it is called when you live among the English (i.e., the able-bodied) – means living in a regular building, assistance with daily tasks of living provided by a publicly-funded agency and enables you to participate in and contribute to the community. And most of the time, it does exactly that.

Except. Because there is an exception and it is woven into the interpersonal relationships that is part and parcel of attendant care. Because caregiving of any kind places the person providing the care in a position of power. An attendant decides if I get dressed in the morning, if I eat, if I go to the bathroom. Without them, I don't. This dependence upon someone else's mood and inclination does funny things to your mind - your perception of personal power and determination shifts and you begin to accept things that you quite frankly shouldn't.

When you receive care, whether it's in the hospital or in your own home, you very quickly become familiar with the concept of being "good," accommodating, easy, because when you are, you get better care. It can be as simple as the kind of mood and attitude the caregiver has - do they smile when they say hello, do they engage in minor pleasantries, cooperate with you, what tone of voice do they use or are they surly and monosyllabic. Receiving care from someone who does not engage with you, but mutely performas the required tasks while looking as if a thundercloud has parked itself permanently over their head makes you anxious, makes you worry somewhere deep inside. It activates the niggling fear that if they feel free to act that unprofessionally, is it really that far before the mood is expressed physically?

I've been known to say that caregiving attracts two kinds of people. Some - most even - do the job because they care, because they genuinely want to make life better for people who need the help in order to live the lives. But then there's a second kind, the ones who do it because they're into power and short of the time and energy you need to invest to become a dictator, caregiving is one of the most powerful things you can do.

Not too long ago, Dave posted about new regulations governing the reporting and investigation of abuse against people with intellectual disabilities (go read it - it's nothing short of inspirational). Dave works in this field and is much more knowledgeable and eloquent about it than I am, so I will quote him when he describes these regulations as "a fully thought out strategy to reduce the likelihood of abuse, to increase the likelihood of conviction of abusers and to ultimately make the system safer." One of the especially brilliant parts of this new approach is that suspected abuse must be reported directly to the police, instead of winding its way through an internal investigation. So much can go wrong in those kinds of investigations within an agency. People who work in the field are not trained in how to conduct a proper investigation, which means not only can they inadvertently introduce a bias, not find out what's really happened, but it also allows time for the guilty to hide the evidence or intimidate the victim and/or other staff. Often, nothing really happens - at most, the offending staff may be transferred and very seldom fired.

Dave sent me to the website, told me to click on the videos (# 6 and 7 in particular) and I did. I watched and listened as these videos described why the new rules have been put in effect. Described the signs and symptoms of abuse, the interpersonal dynamics of dependence and caregiving and as I watched, I could feel the tears well up. Because I recognized them. These dynamics, these feelings and behaviors are universal among those of us who receive care and I recognized them both as seen in others, but also as experienced within myself. I was overjoyed that people with intellectual disabilities are finally protected in a way that much more likely to weed out the bad apples and stop the power games and abuse of those who are vulnerable. And I cried, not just out of recognition, but also from a sense of despair that people like me are not protected in the same way.

People with physical disabilities fall between the cracks in a number ways. Attendant care is not regulated in Ontario the way doctors, nurses and occupational therapists are. Furthermore, if you're older than 18 or younger than 65, there are no programs in place that will protect you from abuse and no commercials on TV to alert the public to the signs of what happens when trust is broken. And on one hand, you can argue that this treats people with physical disabilities exactly the way everyone else is treated and is therefore good thing,, but ignores the reality. Which is when you approach integrating people with varying levels of ability into the community at large, to do so in an equitable way requires putting certain measures in place to get to a level playing field. An example of these measures is accessible design which is supported in theory by the Ontario Human Rights Code and in practice by the Ontario Building Code which sets out architectural specifications for door width, ramps, automatic door buttons, elevators, etc. Attendant care is another such measure, but there is no practical or meaningful quality assurance and that leaves the recipient of this kind of service not just more vulnerable to abuse, but also makes it more likely that abuse will go unpunished.

Of course there are factors complicating the implementation of such quality assurance, aspects of the philosophy of independent living that would require tinkering and adjusting of measures to protect recipients of service, but in the long run, something has to change. Is it for those of us who receive attendant care to wrest control of the service away from those who are currently holding it and what is required for us to receive the level of skill and empowerment to do so? Is it the implementation of regulations governing reports of abuse and what would it take for that to happen? Or, probably more likely, is it a combination of the two?

A shift has to happen. As shift that will make us, our rights visible. As shift that will make it clear that such breaches of trust will not be tolerated.

Thursday, February 24, 2011

Keeping Mobile: Physical Therapy & RA

This week, I interviews an physiotherapist about exercise, pain control and RA:
"Staying fit and flexible is a good idea for everyone, but is particularly important when you live with rheumatoid arthritis. RA does throw some extra factors into the mix, such as avoiding stress on the joints and dealing with pain. Physical therapy can be a useful tool in developing an exercise program that protects your joints, as well as helping you to manage pain. To find out more about how this kind of therapy can help people who have RA, I interviewed Danielle McCormick, a physical therapist with The Arthritis Society of Canada."

You can read the rest of the post here.

Wednesday, February 23, 2011

Tink Day

This past weekend, the Tinks were here to celebrate the Family Day holiday. I taught Liam the concept of pet yarn (cue all the knitters out there saying a collective awwww...

Morgan has lost her first toothand swallowed it, so she had to write a letter to the Tooth Fairy explaining what happened. Luckily, the Tooth Fairy understood

John/TinkPapa had told Liam to bring the Amazing Spiders book because Moster Lene find it so very fascinating. Subsequently, John is not getting any birthday present form me this year. Liam is reading at a grade 3 level already and read the word arachnophobia correctly on the first try. Which is better than I did when I first saw that word.
Morgan is the product of two chocoholics and is here seen exclaiming about how wonderful chocolate is
And then there was what can only be described as a mosh pit in a corner of the living room

Monday, February 21, 2011

Crazy Canucks

Every year, when the spring is so early it's still actually winter, my dad would hold forth about how Canadians are crazy. There'd always be a handy example around, usually a male specimen, flaunting the crazy in public, lending credence to the stereotype. Conditions need to be right to spot the Crazy Canuck - a slight warming trend in the weather, on the plus side of zero, but still only in single digits and in order to qualify as Crazy instead of merely misguided, it should be about February, as this is the time when SAD is at its highest and cabin fever have everyone ready to snap.

Last week, we had two days with 9°C (about 48F) and it was positively balmy compared to the deep freeze of the week before. We all got a little giddy, thinking maybe it was all over, just as we do every year when Mother Nature gives us a break from the bone chilling cold and snow and warms up the place as a treat. Or plays cruelly with our sanity. It all depends on your point of view and by now most of us have such a severe case of winter fatigue that we lean towards the latter.

But back to last week. Perfect weather for the first Crazy Canuck to be spotted in the wild and I was keeping my eyes peeled. I hadn't seen any yet despite keeping a lookout, but conditions were perfect and after spending the previous week in the killing kind of cold, the kind that makes you want to cry and curl up under your covers, sucking your thumb, I was ready. It was only a matter of time and I was very much looking forward to the sighting - this would be one of the earliest I'd have would ever recorded. As these are always a daytime occurrence, I had eased my vigilance on Thursday evening and prepared to go out for dinner with Ken. And then it happened.

There's one every year and this year, it was a friend of mine.

Shorts. In February. When there's still snow on the ground.


Thursday, February 17, 2011

Identity Crisis

When I write for HealthCentral, I am called an Expert. I like the title - who wouldn't? It's nice being an expert, especially if it's with a capital E. It appeals to my latent megalomania and that's never a bad thing. Well, some people might think I'm enough of a know-it-all already, but they clearly just haven't seen the light yet.

Anyway! Here's the thing. Expert is the short form of Patient Expert and that's where I start twitching. It's a word that's bantered about quite a lot in places that employ people with various diseases and conditions to serve as representatives for other people with the same disease or condition. I'm not just picking on the people who employ me, it's other companies like it and it's pharmaceutical companies who are increasingly making sure they include the end user to provide feedback, input and be spokespeople for different types of medication. I'm not sure how I feel about that, but should Abbott Laboratories offer me an indecent amount of money to sing the praises of Humira, I might consider it. Depending on how indecent the money was.

No, probably not, but I do have these bills that need to be paid.

I should get to the point, you say? The point is that language matters, names matters and labels matter and labeling myself as a patient - or rather, Patient - is very much not who I am. A patient is someone who is sick and although it could be argued that I do have a chronic illness, I do not consider myself sick. Having a big flare can make me sick temporarily, but when the meds are working - and sometimes even when they're not so much kicking my RA’s arse - I am not a sick person. Using the label patient reduces you to only your illness and defines you solely on someone in receipt of medical care. And sure, I have a doctor or two in the context of my appointments with them, I may consider myself a patient, but as I sit here in front of my computer writing this post, I most definitely am not I'm also not a patient when I hang out with the Tinks, spend time with The Boy, work for MyRACentral, take photographs or play with the cat.

What does it do to you head if you identify yourself as always being a patient, as always being sick? How can you set about having a relatively normal life if your illness is front and center at all times? This is also why you will never see me use a term "RA sufferer." Because of what it does to your head to identify yourself as a sufferer of anything. I have an illness, but it isn't the totality of me, merely part of what I am. Who I am is someone else entirely and what I am is only occasionally related to my RA.

As those of us who live with miscellaneous medical crap are becoming increasing empowered, more questions are being asked about what we should call ourselves. Healthcare consumer is a good one but a bit of a mouthful and I quite like client because of its connotations to someone paying for a service instead of meekly receiving medical care from the almighty doctors. Not to mention that it might encourage more customer service being insisted upon and therefore included in medical care. Still, I don't have as many quibbles with the word patient in the context of when I am in front of my doctor, but when I am at work? I may be an expert in living with RA, I may be an expert in navigating the healthcare system and I may know quite a bit about the ins and outs of the disease and in helping people who are new to it, but that makes me an advocate, an activist or even every now and again an Expert, but reducing what I know, who I am and what I do to patient misses the mark completely.

It reminds me of attendant care, in which people are paid to help you with activities of daily living - it is non-medical, solely related to things like cooking, showering, dressing, cleaning your house, etc. The deinstitutionalization of the 1970s started the shift in the power dynamics between people with disabilities and those who provide care for them. When the independent living movement got going, they rejected the medical model and its insistence on calling us patients, ditching that term in favor of the word consumer. It shifts us from being passive recipients of care to being active consumers of a service, thereby placing the locus of control where it ought to be. Becoming a consumer is a rejection of the paternalistic approach in which so-called experts (doctors, nurses, etc.) decide what happens to you - because us cripples are incapable of making such decisions for ourselves, y’know - and ensuring that you are in charge of your own life, just like other people.

So. Much as it sounds weird to advocate moving away from the medical model when you're discussing your role in the medical system, considering the theory behind what's going on creates a number of questions. Does the term Patient Expert imply a paternalistic granting of special status by the medical profession, pharmaceutical companies, etc.? Does it convey a privilege instead of right? Is it the term we who fill these roles would have chosen for ourselves? I sort of doubt it - I believe the role was created by the healthy, the able-bodied, the people who are designated to "help" us without input from the population they are trying to empower. Should they - the mysterious They - even be in charge of empowering us or should we take the reins of that process firmly in our own hands, start a dialogue between ourselves and then get back to Them when we've decided what this puppy is going to look like?

I think you know my vote.

Monday, February 14, 2011

Sunday, February 13, 2011

A Year Ago


I still miss her, the space in my heart that was hers remaining so.

Thursday, February 10, 2011

Baby It's Cold outside: Surviving Winter with RA

Staying warm inside and out is the topic of my latest post for MyRACentral:

"Although Toronto's portion of Groundhog Day storm wasn't quite the Snowmageddon the very excitable weather guys called for, I still have a serious case of winter fatigue. My windows are frozen shut most of the time, my hands are red and raw from cold, I'm tired of shivering and somehow, being in the depth of a cold snap makes everything more stressful. Between the weather and the demands of life, you can feel cold both physically and emotionally."

You can read the rest here.

Wednesday, February 09, 2011

A Wish for Less

I miss subtlety. I miss allusion, hints, intimation and mere suggestions.

This is not a moment of wistfulness that is unfamiliar to me, but what brought about this latest attack of longing for a light touch was watching the trailer for Let Me In, the American version of Let The Right One In. The Swedish original is so perfect that I did for a while rant about the ridiculousness of Hollywood always having to remake something that's already good, just because there might be subtitles involved (don't even get me started on The Girl with the Dragon Tattoo series). And I wasn't alone - criticism about this boneheaded move abounded, until Let Me In came out and several critics whose opinion I trust retracted their rants. Sure, they still thought the first one was perfection, but said that the American version had, for once, respected the original and although reinterpreted it slightly, retained all its beauty, innocence and creepiness.

Admittedly, I'm not sure creepiness is the right word to describe that movie, but it'll do for now.

So… sure. I adored the original to the point where I want to own it, but given the unanimous thumbs-up decided I wanted to see it, too. Very conveniently, its trailer appeared on the recent rental and this is where I get to today's point.

Because having watched the trailer, I no longer need to watch the movie. It's been a trend for while then trailers pretty much tell you the entire story and Let Me In is no exception. Having watched the original, I can reliably tell you that everything, except potentially the very end, is in the trailer. There will be no suspense going into the movie, there will be no delicious jolts, no moments of catching your breath with the unexpected quiet tenderness, no unfolding of discovery that is part of the joy of watching a movie and especially this one.

Why must trailers now contain the whole movie? Not only that, they often also give away all the best parts and whereas I have no problems with a trailer giving me a taste of what's to come - an appetizer, if you will - do not feed me the entire movie in a minute and a half. This isn't fast food, people, it's a meal at a restaurant!

Which naturally brings me to perfume. Logical, innit? Bear with me, it will be in a moment. Because there, too, all subtlety is lost. Back in the days where I wore perfume - which I don't do anymore because of the asthma and yes, I know that using the phrase back in the days makes me sound as if I'm 90 - you dabbed a little on a pulse point or two as part of your toilette and moved on with your day. People had to get really close to you to know what you smelled like - you wore the perfume, it didn't know wear you. Now? Now it is apparently de rigueur to bathe in it so it enters a room a good couple minutes before you do and stinks it up for long time after you leave. Add that that more and more people seem to be perfectly comfortable applying it in hallways, lobbies and elevators, inflicting their scent even more on the rest of us. And I don't get why you'd want to bring your perfume with you in your purse, because if you wear that much of it, it's not like you need to reapply throughout the day.

Why must everything be so obvious? For pity’sake, leave something to the imagination!

Friday, February 04, 2011


I'm almost 2/3 of the way through Abigail Adams and very much looking forward to the book club discussion later this month. It's a fascinating book - easy to read, I'm learning a lot and it's making me think about a whole host of issues. Despite all that, I've been getting twitchy and I finally figured out why.

I'm fiction hungry.

It happens sometimes when I read a longer nonfiction work, but usually I have to be kind of bored and I am definitely not bored with Abigail Adams, so I've been telling myself to buck up and get a grip. And I do, for an hour of listening or so, but then part of my brain start thinking about several yummy sounding novels I have in my stash and Laurie posting a list of the 10 best books she read in 2010 doesn't help at all. Several of this list are now on my hard drive - yes, I know I'm on a book diet, but the library doesn't count, does it?

So. The fantasizing about this novel and that one has been increasing and I was starting to think that I'd completely lost my ability to read something edifying, but then I remembered being captivated by The Wave, so that clearly wasn't it. And late last night it came to me.

Much of my life is nonfiction. MyRACentral is nonfiction, The Book is nonfiction and my blog is definitely not fictional - sure, it's a place where things are much looser and I get to think and meander and sure, some of the events I write about our ludicrous in the extreme, but I don't make this stuff up. And that's it. Balance.

I read novels to nourish a different place in my head and without it, I feel a little lopsided. It doesn't matter how fascinating a pile of nonfiction tomes is piled on my metaphorical night table, a novel will usually appear more tantalizing to me. Because for most of my day, that part of my brain doesn't get fed and it gets hungry. Actually hungry, starving even. Describing the dance of titles traipsing through my head while I'm trying to focus on Abigail as "fantasizing" was the only way I could think of it. It was like being really, really hungry, not having eaten very much of anything for days and imagining dish after succulent dish floating through your head, the aroma wafting by your nostrils and... Okay, there was almost drooling.

Is there a book version of drooling?

So I'm going to take a break of a break from Abigail and dive into a novel. Most likely this one. I'd planned to pick one from Laurie's list, but that one has been on heavy rotation in my fantasies, so that's where I'm going to go. Bookclub might be a bit delayed.

Wednesday, February 02, 2011

70% Water

A month ago, I had a great idea for the 2011 Silent Poetry Reading, but 4 weeks later, have no idea what it was. So instead, I offer a personal poem in pictures...

70% Water

An Exhibit of Photographs
Lene Andersen

Oakwood Village Library & Arts Centre
341 Oakwood Avenue
February 1-26, 2011

p.s. And because I was - and continue to be - fried when I posted this, I forgot to say something very important: Thank you to Michele, Richard and my Main Minion (aka The Boy) for all your help. Without you, there wouldn't be an exhibit.