Monday, April 30, 2012

Customer Service. What a Concept.

   
Case #1: let's imagine a purely hypothetical situation in which I receive housekeeping services from a particular organization. Let's further imagine them hypothetically calling me to inform me that my regular housekeeper will be away for five weeks and that they will be contracting out housekeeping services to a temp agency. We could also imagine that I asked whether I will get the same person every week, to which they hypothetically respond that this can't be guaranteed. Leading to the hypothetical situation of having to take three hours every week - an amount of time that often represents most of my entire workday - to run around after someone telling them how to clean my apartment.

Case #2: let's imagine my mother hypothetically having an appointment with a physiotherapist at about 2 PM. Let's further imagine she got the call at nine o'clock in the morning from the physiotherapist saying that they're close by and could they come now. When my mother (hypothetically) replies that no, she's not ready, they asked if they could come around 10. To which my mother hypothetically stated that no, she was not available. At which time the physiotherapist hypothetically got snippy.

I've been kicking around a nice head of steam about Case #1 (hypothetically, of course - let's just assume that this qualifier will proceed any further discussion of such pretend situations) and when I heard about Case #2, it all came together with an audible click in my brain. Because that's when I realized that it was all an extension of the prevailing attitude towards old people that they have nothing to do except sit around and knit or twiddle their thumbs and therefore their time belongs not to themselves, but to the people who provide services for them.

(Not that I'm calling my mother old, y'unnerstand. I value my life too much to ever say such a thing)

The same attitude permeates services for people with disabilities. Because apparently we have no lives and therefore it doesn't matter when we receive services or by whom, because we're not doing anything anyway. And should we kick off a bit of a fuss at this attempted hijacking of our lives, service providers very often get quite snippy at us daring to inconvenience them in such a way.

I have a theory that it comes from such services originating eons ago in charity, yet somehow never quite having shook off the attitude of charity despite now being publicly funded by tax dollars. Because nevermind if these services are provided because it is considered a right, not a privilege (yes, that again). Or that we are paying for them, either directly through insurance or indirectly through our taxes. If you want good service, you have to be nice, play the good little cripple/sweet old lady and jump through the hoops of that ridiculous role-playing where it behooves you to make the person feel good about providing the service for you. The service that I feel compelled to point out yet again that they are getting paid a nice wage to provide.

None of them seem to understand that we are their customers. And that's partly because we often don't have a choice, can’t take our business elsewhere, but even so, that shouldn't matter. What should matter is them understanding that they're mandated to provide this service that is based in a philosophy of respect and dignity and if the implementation/provision of that service is not done with respect and dignity, they are not fulfilling their mandate. In other words, they are not doing their job.

But this never seems to be part of training of such service providers. Or if it is, it's not followed up with any sort of further training, customer feedback and accountability. At least, it doesn't seem that way, because it's so pervasive within services to people who need that extra bit of help getting through their lives. And should you put your foot down, draw line in the sand and gently - sometimes not so gently - insist that you get treated like a regular person and perhaps even a customer, it's like bouncing off a wall of Jell-O. It's ridiculous that you have to fight that hard to have your time respected.

Sometimes, I wonder if we would all have a lot more energy if we didn't have to spend quite so much time educating those who are mandated to help us.
   

Tuesday, April 24, 2012

The Weird Sisters

   
Sisters are complicated. Sisters are easy. Sisters shape who we are, reflect and contrast, sustain and annoy. Sisters are essential and elemental.

Rose, Bean and Cordy are three such sisters. As daughters of a Shakespeare scholar, they are named after characters in his plays: Rosalind, Bianca and Cordelia, but not surprisingly, their names became shortened, made less imposing. Naturally, giving the Shakespearean connection, there is also a mention of the Wyrd Sisters from Macbeth. Wyrd, not weird. Wyrd in the sense of something fated, of destiny.

I have just finished reading The Weird Sisters by Eleanor Brown and still feel as if I haven't quite left that particular universe. It all starts when Rose, the oldest, looks into the mirror at her parents home and wishes her sisters were there, too. This is a bit unusual for these three sisters, but their mother has been diagnosed with cancer and in situations like that, you need your sisters. Before you know it, things happen and Bean, the middle sister, is heading home. Soon after, Cordy shows up, as well. All three sisters are stuck. All three sisters need to find a way out of a troubled situation and into a life of becoming who they were meant to be. That particular personal journey is best done when you start it surrounded by the people who shaped you in the first place.

The book's narrator is the first person plural, the sisters as a unit. Initially, I thought it an interesting choice, but worried that it might grow old quickly. It is a credit to Eleanor Brown's writing that it doesn't. In fact, it starts making perfect sense, connecting you to that ephemeral way that sisters are in many ways one. Spend time around any pair (or more) of sisters and you start noticing how they move the same way, inflect their words similarly, move down a path of thought side-by-side. I’ve heard it can get downright unnerving. Brown looked at this tendency of sisters and took the next logical step and she did so in a way that pulls you further into the story, making it a little mystical, a bit about fate and a lot about that mystery within and between sisters.

Brown also manages something else that is quite astounding. Each character in this book is in a way a stereotype. Beyond a stereotype -they are archetypes. There's the controlling older sister, the irresponsible youngest and the one in the middle who always seeks attention. There is a father who is an absent-minded professor, always with his nose in a book and a mother who is mildly present, yet far away, as well. And yet, each character in this book is fully fleshed, a three-dimensional person with their own quirks, flaws and a quiet heartbreaking need to break out of the mold. As a reader I enjoyed this tremendously and as a writer, I turned chartreuse with envy and admiration at the deftness and light hand with which Brown drew her characters.

Books play a large role in the story - this is a family who reads like they breathe. Everyone is always reading, books are part of almost every scene and there was a wonderful comfort in this. Shakespeare, too, plays a large role, and I wish I knew more of his material because I am certain that many of the themes were modern takes on scenes or entire plays. Sisters and parents frame their discussion with quotes from Shakespeare and again, I was caught up in admiration that Brown could integrate these quotes so effectively and seamlessly in this story. It reminded me of one of the handful of things I remember from my first-year introductory psychology course about 30 years ago: my professor at the time once said in a lecture that everything you ever wanted to know about psychology, you would find in Shakespeare.

I caught a glimpse of a review somewhere, possibly on Audible, that referred to this book as "chick lit" with more than a little derision. The Weird Sisters is chick lit in the sense that it is about women, relationships, personal journeys and there are a couple of love stories thrown in, too. Instead of that terrible pigeonholing I'd like to think of this as a book about life and a wonderful one, at that. It makes you think and evokes an emotional response. That makes it art, not fluff.

No review of this book would be complete without some serious gushing about the narrator, Kirsten Potter. She doesn't read this book, she inhabits the characters. Potter's inflections perfectly capture the mood of the characters and the action, tiny modulations interpreting the words and deepening the story. Although I was quite taken with this book, it is quite possible that the narration made me love it more than I would have had I read it as a regular book. I promptly checked Audible to see what else Kirsten Potter has narrated and realized that she also read Catch Me by Lisa Gardner. This is a completely different book and one which I finished just a few weeks ago. I was stunned to realize that I'd had no idea it was the same narrator - that's a sign of some serious skill and talent!

Bottom line? Get this one - preferably on audio - settle in on a cozy couch with a cup of tea and prepare to get lost for hours. It'll be a great trip.
   
   

Thursday, April 19, 2012

9 Tips for Managing Gastrointestinal Side Effects

   
Gastrointestinal symptoms were a big part of my post a while back about my adventures with side effects from Humira. This week on HealthCentral, I wrote about dealing with such side effects:

"Many RA meds have one side effect in common: they can make your gastrointestinal system very unhappy. Acid reflux or GERD can make it feel as if there's a roiling vat of acid burning up your midregion. Then there's nausea, bloating, gas and constipation or diarrhea that can feel very similar to Irritable Bowel Syndrome (IBS). Speak to your doctor about your symptoms. If they seem to be side effects of your medications, most of the time, it's possible to find a way to manage them."

You can read the rest here.
   

Monday, April 16, 2012

Toasty

    
It had been a really busy week and it was only Tuesday afternoon. The exhaustion was making the world fuzzy around the edges and my brain was so overstimulated that it wouldn't stop running around in circles. I headed for my Mandatory Rest Period and tried to shut down aforementioned brain. It took a while, but finally I fell into a restful sleep.

And then the fire alarm went off.

I didn't think much of it because it goes off on a regular basis. Sometimes it's cooking odours, sometimes it's kids pulling it, sometimes it seems to be because the wind changed. So I tapped my feet waiting for it to be turned off and tried to comfort a freaked-out Lucy. She started by climbing under my blankets, then moved to lying next to my head, then plastered herself up against my leg and finally moved back under the blanket again.

The phone rang. It was a friend of mine who lives in the building.

Friend: "I don't want you to get upset…"
Me: "what now?" Because it had been the kind of week that warranted that kind of question.
Friend: "there's a fire on the floor above you. It’s down the other end of the hallway, though."

So there I am, lying in bed and unable to get up. I have an anxious cat next to me, the din of the fire alarm is making my ears ring and I'm trying very hard to not to add extra emotion to the situation.

This is the point where I should perhaps mention there's a rule about what to do with people with disabilities in cases of fire. When the alarm goes off, elevators return automatically to the ground floor and will not function normally for the duration of the alarm. The Fire Department will rescue, but not evacuate. This means that people who need assistance stay put in their apartments. There is a box in the lobby with the fire plan which contains a list of apartments where individuals need help. If the fire spreads to the point that it becomes dangerous for such people, firefighters will come to your unit and cart you downstairs.

Back to Tuesday where I lie in bed and consider possible scenarios.

One: the Fire Department contains the fire before it becomes a blaze and gets it under control quickly and efficiently.

Two: the fire spreads and smoke starts moving down to floors below, including mine. I check that I can reach my inhaler.

Three: the fire spreads and I will need rescuing. As I went to bed for my Mandatory Rest Period, I am sporting a significant degree of dishabille and very much not ready for being viewed by strangers (even hopefully hunky firefighters), carted down a flight of stairs or plopped down on the sidewalk in full view of the neighbourhood. I can't get out of bed on my own and I can't get dressed on my own. Should the worst happen, I'm pretty sure  the firefighters would not take the time to assist me with getting dressed. Fabulous.

I go back to stroking the cat and twitching, feeling unaccountably toasty.

Blessedly, the fire alarm is turned off after about half an hour and I call my friend. The fire was contained and controlled and all is as well as can be expected under the circumstances. I later find out that this event was attended by seven fire trucks, a couple of police cars that blocked the road and one of the local TV stations. I'm really glad I didn't know that while I was lying in bed, trying to calm down the cat.

Never did fall asleep again.
   

Saturday, April 14, 2012

Casting Call - Accessibility in Ontario

 
I've been asked to help spread the word on this casting call for people with disabilities. If interested, please send your application asap - the casting call is in Toronto next week:



MILO CASTING INC. IS SEEKING
PEOPLE WITH DISABILITIES TO PARTICIPATE IN PHOTO SHOOTS TO PROMOTE ACCESSIBILITY IN ONTARIO


Milo Casting Inc. is seeking males and females of all backgrounds, ages (18 years and over), and disabilities, both visible and non-visible, to promote accessibility in Ontario.

MUST BE AVAILABLE FOR THE FOLLOWING DATES:

Audition Date: TBD (15 minutes commitment)

Shoot Date: Saturday April 21, 2012 or Saturday April 28, 2012
  
*Talent would only be required for 1 day

Those chosen for the campaign will be financially compensated


YOU MUST BOOK AN APPOINTMENT FOR AN AUDITION.
IF INTERESTED, PLEASE EMAIL info@milocasting.com THE FOLLOWING:


i) YOUR NAME, AGE AND ETHNICITY
ii) A BRIEF DESCRIPTION OF YOUR PARTICULAR DISABILITY
iii) PHOTOS OF YOURSELF - LIMIT OF (3), EACH UNDER 50 K IN SIZE
iV) ALL YOUR PRIMARY & SECONDARY CONTACT INFORMATION


ANY QUESTIONS OR CONCERNS? PLEASE PHONE: 416.360.0336 ext. 233

**YOU WILL NOT BE COMPENSATED FOR THE AUDITION
**YOU MUST BE LEGALLY ENTITLED TO WORK IN CANADA
** IF YOU ARE REPRESENTED BY AN AGENT PLEASE ALLOW THEM TO SUBMIT YOU FOR THIS PROJECT

60 SUMACH ST / 2ND FLOOR / TORONTO, ON M5A 3J7 / T: 416 360 0336 / F: 416 360 0465
   

Thursday, April 12, 2012

Sakura Hanami

   
I never knew Toronto's High Park had Cherry Blossoms. In fact, despite my almost 30 years in the city, I've never been to High Park. Then last year, I heard about the cherry blossoms (after they bloomed), read about the absolutely charming Japanese tradition of Cherry Blossom Watching or Sakura Hanami (Google streetview awesomeness here) and why high Park's cherry trees are special. In the past few weeks, we've been eagerly watching the High Park Nature Centre website for updates. This past weekend, they popped and we went.

High Park is wonderful! Very woodsy in places, lots of nature and it felt so incredibly restful to be surrounded by it all. 

the first piece of wonderful was this copse of pine trees. As we walked past them, the scent of pine and fresh air hit us and I felt as if I were home in the forests of my childhood. It was a very windy day and hearing the wind whoosh through the pines made it even better.

 

 We turned the corner and there they were

 



There were lots of people marveling just as much as we were and many were Japanese. I suspect some were  having their own flashbacks to home


Some were in full bloom


Others had barely started. And there was this incredible tree


We wandered down to Grenadier Pond and saw a boy with a stick


The willow tress were nothing but the most delicate green


and there was wildlife, too





Tuesday, April 10, 2012

Presumption

   
Every now and again the universe conspires and lets me know without prevarication that I'm supposed to write about something. It started when I (somewhat belatedly) read Dave's post about World Down Syndrome Day, which had a lively and at times disturbing conversation in the comment section. A discussion which included responses to a comment that sounded awfully as if the person advocated aborting a fetus with Down Syndrome and other questions about the suffering brought into this world if you "purposefully create people with DS.” That is, the suffering experienced by such people (and note that is relevant for my post is that none of the people who left such comments appeared to have DS themselves). Shortly after that there was much discussion about the perceived lack of worth and some fairly heated comments that you can go read for yourself. I percolated on that for a little bit, thinking I'd write about it later.

And then last week, I saw this. It is a letter from Laurie Larson, the President of the Canadian Association for Community Living containing a formal complaint about a program aired on Global Television. It was a report on 16x9, a news magazine show, featuring "advocates who wish to change Canadian law in order to allow them to end the lives of their sons and daughters with disabilities." Because medical science prevents “the law of nature” from taking its course, “the law of a nation” keeping them alive. Because the parents can’t believe they’d want to stay alive. Robert Latimer was on - no surprise as he is the darling of this particular movement (see why here). The program included a panel discussion composed entirely of these advocates, with no dissenting opinion from people with disabilities or families of children with disabilities who disagreed with this position. By the way, please spread that letter from Ms. Larson on every social media platform you can find. We need people to get up in arms about this. If you have the stomach for it, you can see the 16x9 story here (the Taking Mercy link)

And that's what did it. That's what made all the wheels in my brain click into place with a need to respond.

I am one of those children who these “advocates” might have recommended to be killed. After all, it is cruel to sentence a child to live with a severe systemic illness that causes constant pain, left me in hospital for years when I was growing up and twice has required medical science to prevent nature from taking its course (come to think of it and continues to do so, every day). An illness which necessitates I get help from professional caregivers to go to the washroom, take a shower, dress and all the other little minutia that everybody else can do for themselves. Because that's a horrible life, right? It is a life of suffering and dependence and must therefore be beyond bearing.

I have heard this so many times throughout my four decades of living with a chronic illness and disability. It is expressed in pity, in admiration, in exclamations about how brave and courageous I am, statements about how the person speaking could never do what I'm doing and sometimes, they get brutally honest and say what they really mean. That if they lost the use of their legs, they would kill themselves.

Usually, I am somewhat of a smartass, saying that they have no imagination and jump on the opportunity as yet another educational moment. But today is not one of those days. Because today I am not in the mood to educate or jolly someone along to understanding. Today I will say this to these people of limited imaginations:

How dare you presume to decide what makes life worthwhile? How dare you say that because this person can't walk, that person has an intellectual disability and the one over there lives with chronic pain, their lives are not worthy of being lived? Who are you to judge? By making these statements, you have proven yourself to not have the capacity to imagine a situation other than perfect health and therefore you cannot be trusted to make decisions about anyone else's life.

I'm sure someone would argue that my friend Beth is living through something so hard that it is impossible to imagine wanting to keep going. She lives with intense daily pain, brain damage that means she can't remember what happened three days ago and daily strokes or seizures. Yet she fights to not just get through each day, but to live every minute that she can and right now, she's at Sakura-Con.

One of my attendants told me a story of a client at her other job. She works in a supportive setting for people will multiple complicated disabilities, all of them wheelchair users and nonverbal to various extents. One of her clients likes to go to The Ex, an annual fair that invades Toronto three weeks every August. Once dressed for the morning, she takes the regular accessible bus and boots around the fairgrounds until late at night, managing to buy food and find someone to feed her. Every year for the first week or so, the staff will get calls from concerned police officers who are worried about the poor girl who can’t talk being all alone. Staff will then have to explain about a concept called "the dignity of choice" an eventually they stop calling. I'm sure someone would argue that this woman’s life is a horrible one, but she doesn't seem to know that.

Just because you can’t imagine living with chronic pain doesn’t mean someone else won't be able to be a productive member of society. Just because you can't imagine being happy if you didn't have a normal IQ doesn't mean someone else in that situation can't be joyful. Just because you can't imagine living with legs that don't work doesn't mean someone else can't create a meaningful life from a seated view.

None of us are living happy lives "despite" our circumstances, imagined to be so terrible. We have adapted and got on with life just the way we are. And I will say another thing to these people of limited imaginations: I feel sorry that your view of life is so narrow and so damaged that you look at us and see nothing but can’t. See nothing but horror. So here we sit, both of us feeling sorry for the other and that's fine. We have a right to differing opinions. But I am not arguing that you should be killed because of your limitations. You, on the other hand, are arguing that people who are not like you should be. And it reminds me of how the Nazis started: with killing people with disabilities and calling it "mercy."

And you could argue that this is an isolated case, that Tracy Latimer was just a girl who had a lot of challenges and many of them very painful. That Janet and Jeffrey Corriveau are far beyond what most of us would consider quality of life. And every time I mention feeling threatened. by talk such as this, someone will tell me that I don't have to worry, I suppose because of my IQ or because I have enough people around me who will protect me. But here's the thing: where does it stop? If it is okay to kill Tracy or Janet or Jeffrey, at which point does it become okay to not give a girl with DownSyndrome a kidney transplant? And what if it were a heart transplant, would it be okay to withhold that, too? And then what about people like me?

In the 16x9 report, Annette Corriveau says that she believes if her children had a choice, they would use suicide. That she cannot imagine anyone wanting to live like this. And that is the problem right there. Because it is about her judgment of what makes a good life. The Latimer case was about Robert Latimer’s judgment of the value of his daughter's life. The "Canadian public opinion" that is quoted in the 16x9 report as agreeing wholeheartedly with him is also the judgment of the able-bodied people of "normal" intelligence. And out there, not too far away, someone looks at me and thinks that if what has happened to me happened to them, they would kill themselves.

Where do you draw the line? Who draws it? And how is it not inevitably a presumption about the worth of a life that no one not living it can imagine? There is a reason we have laws protecting people - especially vulnerable people - from the consequences of the judgments of others. Because the court of public opinion cannot always be trusted one of my favorite examples of this is that when interracial marriage was made legal in the US, 70% of the population disagreed with it. Someone - supposedly Gandhi - once said that you can judge a society by how it treats its most vulnerable. To my mind, believing you have no right to make a decision on behalf of others when you cannot imagine how they feel would be a good place to start.

  
  

Saturday, April 07, 2012

Show Us Your Hands! Inflammatory Arthritis Community Collage Grows To 1000 Photos

   

Show Us Your Hands! Inflammatory Arthritis Community Collage Grows To 1000 Photos

(April 7, 2012) – Show Us Your Hands! is pleased to announce that its inflammatory arthritis community collage has grown to more than one thousand photos. This interactive collage includes the hands of individuals who live with many different types of inflammatory arthritis, and can be viewed online at www.showusyourhands.org/interactive-collage/. To commemorate this milestone, Show Us Your Hands! plans to release a new 1000 Hands Poster this coming May as part of Arthritis Awareness Month.

The one-thousandth photo was submitted by Kathy Winkelmann of Rochester Hills, Michigan. Kathy was diagnosed with rheumatoid arthritis in December 2011. “I’m just learning how to come to terms with it and not let it take over my life,” she says. Kathy will receive a complimentary copy of the upcoming 1000 Hands Poster, in recognition of the fact her hand was officially the one-thousandth photo that was submitted to the community collage.

The interactive collage debuted in December 2011. People of all ages from around the world are represented in this community project, and new photos continue to be added to on a regular basis. This community collage project serves not only as symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their inflammatory arthritis hands.

“When I first came up with the idea for this collage, I thought it would include, at most, one or two hundred photos. I’m so excited to see that the collage has expanded to more than a thousand photos in such a short period of time,” says Rheumatoid Arthritis Guy, creator and one of the founding directors of Show Us Your Hands! “I can’t wait to see how much more our proud community of hands will continue to grow into the future!” 

Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren's Syndrome, Still's Disease, and Systemic Lupus Erythematosus.

Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.org. Show Us Your Hands! can also be found on Facebook and Twitter.
   

Thursday, April 05, 2012

10 Tips for Building & Maintaining Energy

   
This week on HealthCentral, I'm looking in to the fatigue issue:

"It feels as if somebody's pulled your plug. As if you're enfolded in a lead lined comforter, weighing you down with every step. A 2011 study published in the Annals of Rheumatic Diseases stated that 70 percent of people with RA experience a healthy dollop of fatigue, sometimes a level of exhaustion as profound as in chronic fatigue syndrome. It can make it impossible to do your job, take care of your family or just get through the day. Even when you're responding to treatment, sometimes that makes you tired, too. Today, I'll be looking at tips for building and managing your energy."

You can read the rest here
   

Monday, April 02, 2012

A Conversation with My Mother

   
Me: I couldn't sleep last night because I have this great idea!
Mor: uh-oh...
Me: Why do people make that noise every time I say I have a great idea??
Mor: Because it usually means your workload explodes.
Me: No, no! This one shouldn't take too much work!
Mor: uh-huh.
Me: why do people make that noise every time I say that?

Seriously. Should be a snap!
  
(PS Happy birthday to mor who turned mumblemumble yesterday!)