Friday, December 30, 2011

Leading with Joy

   
"You must be very angry."

This was the (rather leading) question of one of the journalists I spoke during my brief tenure of being a spokesperson for the Health Council of Canada. We'd been discussing the eight months I waited for funding approval for Enbrel, of how the RA ate my life and made me more disabled, to the point that I never regained the ability I had before the flare. And likely never will. The reporter seemed to very much want me to be angry, to hold forth with a blistering indictment of the system, to grieve the loss still.

And I'm not, I didn’t and I don't. I think I may even have looked a little puzzled at them before I answered. Because seven years ago, I thought I was going to die. At this time seven years ago, I thought it might very well be my last Christmas. And seven years ago, I was absorbing everything I could, mentally recording and honouring my life and the people in it because I had begun to say goodbye to the world.

I didn't die. I found a medication that gave me back my life. And sure, it’s taken me seven years to fight back, to get to where I am and sure, I’ll never get back certain abilities, but y’know?

I thought I was going to die. And I didn’t.  I thought I was losing my life and instead, I got a second chance.

The reporter tried again, from a slightly different angle and I must've sounded like some blessed-out nincompoop, because there was a smile on my face and my answer kept being "I thought I was going to die and I didn't." Eventually, they gave up but I could tell from the expression on their face that they didn't understand.

There are things I cannot do anymore, things I used to love and would love to be able to do still. Using my manual wheelchair and popping into a friend's car for a road trip. Packing a suitcase, grabbing my passport and taking a plane to another country. Getting through a day without having to lie down for a couple of hours in the afternoon. And so on. I will happily offer myself up as a poster child for a campaign to reduce the wait times for funding to medication, would share my story everywhere if it could help protect others from losing ability and health. But I have no intention whatsoever to devote my life to regret.

I could wallow in what ifs, look at what I don't have, take a ride on the bitter bus. After all, it's what you're supposed to do when bureaucratic nonsense derails your life, isn't it? But here's the thing… When you are given the gift of life, why would you waste that gift with anger? When you are given a gift as profound as getting back your life, you jump into it with both feet, you fly into the mystery and every day is a bit delirious with joy.

At this time of year when I look back on for another year of living and forward to the adventures of a new year, it keeps coming back to this: it's all relative. I have had seven years of life I didn't think would happen and there is every reason to believe I will have many more. Time to share with the people I love, to pursue my dreams, to laugh at Lucy's antics, to meet up with friends both in my living room and on the Internet and to see the sun shining through the tender leaves of spring.

It is all about the joy. Thank you for sharing it with me.

Happy new year! 
   

Tuesday, December 27, 2011

Christmas Shenanigans

   
Coming up for air after a weekend of immersion in the Christmas spirit is an oddly disconcerting experience. It's back to work and I'd much rather stay within the warmth and joy of what in Danish is called Julehygge. In other words, hygge specific to Jul (Christmas). It's a good place to be.

The Boy and I started early on Friday (aka Lille Juleaften - Little Christmas Eve) and went to the Distillery District to see the giant Christmas tree. walking through the narrow alleys, around the old buildings and rattling across uneven cobblestones made it feel much more authentic, almost Danish.


Saturday morning, we opened a few presents and gave Lucy some tissue paper. She is very, very fond of tissue paper.


In the evening, we all congregated at my mother's for an evening filled with wonderful food, companionship and everything else that makes for a perfect Christmas. This year, it included a visit from a very small vampire. No, not really, this photo was taken during an extended part of the dinner when it all deteriorated into making fart noises. Surprisingly hysterical.



After dinner, Ken entertained the kids while others cleaned up


And then there was carol singing, in both English and Danish.Scott, Michele's youngest, joined us for the first time and jumped up right in, singing along in a language he's never seen before and based on his ability to pronounce these strange words, we suspect he may have been Danish in a past life.


He also brought a big Rubbermaid container filled with Lego to pass on from him to the kids. The rest of us had a hard time not diving into the pile


Morgan got a puppy. Battery-operated, but still a huge hit. She pronounced it "the best present!"


 Liam has lost his first teeth and was very proud


And at the end of the night, a Christmas cuddle.

 
    

Friday, December 23, 2011

A Very Glædelig Jul


    
And a pronounciation guide on how to say Glædelig Jul (aka Merry Christmas)!

Have a wonderful everything!
  

Wednesday, December 21, 2011

The Girl in the Bubble

   
48 hours after our last weekend together, The Boy came down with the plague.

Okay, so maybe it wasn't bubonic, but it certainly was a particularly pestilential case of the flu. The Boy rarely gets sick – he’s one of those annoying people with an iron constitution – and when he does get sick, it's usually short-lived and mild. This one wasn't. This one absolutely flattened him.

How I managed to avoid catching this is beyond me. He and I get pretty friendly when we're together and yet somehow, he's the one who sank into a soup of misery and germs while I motored on with my life. I'm sure you can imagine the frantic knocking on wood that's going on as I'm writing this. My neighbours might start suspecting an infestation of woodpeckers.

By the time The Boy comes back into my general vicinity this Friday, it'll have been close to three weeks since we've seen each other. Because I have a suppressed immune system and that means staying far, far away from sick people, no matter how much I love them or how much I may need to see them, either for personal or professional reasons.

It can take a while to train others to understand what a suppressed immune system means. Most people don't seem to quite get it and maybe that's because most people don't understand what RA is. Even before I was on a medication that suppressed my immune system, I would get harder hit by illness than most other people. Now? I had the flu in June and it's taken me about five months to get reasonably close to my normal state of health.

These brilliant medications that help protect our joints and organs from damage come with a price and it isn't just side effects. It's isolation, a form of reverse quarantine, if you will. Most of the time, reasonable precautions, a bit of extra attention to cleanliness and a truck load of hand sanitizer for use after handshakes and touching public surfaces will  keep you protected from catching whatever's going around. But every now and again, it's time to head into the bubble.

People don't get it. Since I wasn't hanging out with The Boy this past weekend, I made a lunch date with a friend I've known for years. We’d make the arrangements by e-mail so I wasn't prepared for her sounding just as pestilential as The Boy. Both of them coughing with every other sentence and so stuffed up they sounded as if they were at the height of the flu, despite both having lived with it for two and three weeks respectively. I begged off, claiming suppressed immune system and not being willing to take the risk. My friend, who you'll remember has known me for years, told me that she "wasn't offended" and that she "hadn't thought about it."

And that's it in a nutshell. Because people do get offended when you cancel yet again because they're sick. It's just the sniffles, after all. Or they've had it for a week, so they shouldn't be contagious anymore. What for them may be a minor case of the sniffles could cost those of us who live with RA and take immunosuppressants three weeks or more,  potentially hospitalize us. If gets awkward when you have to yet again explain to someone why you have to leave or (to an attendant) why they have to wear a mask while they are assisting you with your care or be extra diligent about handwashing after touching raw fish (yes, seriously. A healthcare worker who doesn't understand). Time and again, I've been in a situation where I have to weigh trying to explain to someone why I'm backing up as if they have just turned into a Typhoid Mary versus risking catching their germs. It's taken me a long time, but I've finally stopped being polite and now my need to stay healthy is more important than their need to not be offended.

And people do get surprised, because they don't think about it, often despite repeated education about the reason you have to be cautious to the point of paranoia. To a point, I don't expect them to - they don't live with this, I do - but there is also another point when you start wondering if maybe they don't believe you. I am obviously disabled and it's therefore easier for me to persuade people that I'm sickly and fragile, but for someone who's RA is largely invisible, there is a real barrier to understanding. Because they look fine, don't think? So they can't possibly be sick or in pain or have a delicate constitution.

I've been thinking about how to help build that bridge between our reality and yours and I'm a little stuck at the moment. Could be because of holidays are taking up most of the room in my head, but so far, the best idea I've had is walk around ringing a bell and chanting "unclean, unclean." Not at all related to the truth, but guaranteed to have an impact.

Do you have a better solution?
   

Monday, December 19, 2011

Talking About the Money

   
"You assume that it's all covered."

It was at the tail end of my interview with the CBC - no, not shameless name dropping, actually relevant to this post. (shameless self-promotional links to two of last week’s interviews at the end of this post). I was chatting with the reporter and cameraman as the equipment was being put back in their respective bags. The discussion was about the ripples of chronic illness and disability, how it goes beyond just medication costs and into things like adaptive equipment and tools, wheelchair repair and automatic door opener repair.

And there is that assumption that it's all covered, at least up here in Canada, land of universal healthcare. Or that it's cheaper, somehow. That people who have health challenges don't have to add financial challenges to their lives, too. Because that's not fair and we like to think ourselves as a fair country. Come to think of it, most of the Western, industrialized nations also like to think of themselves as their countries (exclusion of other countries not based on anything but my ignorance of what goes into their feelings of nationalism).

I wasn't the only one talking about the money this week. RA Guy also wrote about the cost of living with a chronic illness, a cost that is so steep that he can't afford to move back to the US. But it goes beyond the fact that medications, equipment and whatnot aren't covered and right into charging higher prices. As Dave explains in his post about the cost of disability yesterday, if you’re disabled and want to have a bit of a life, the kind of life that might include staying in a hotel room or going to a show, you have less choice and have to pay more.

This is where I started to wonder about the assumption. About why it is possible that people who often more vulnerable than most can be put in a position where they experience financial discrimination and extreme financial hardship without anybody saying much. And I think I’ve found the one of the reasons.

It's because no one talks about money.

When I was asked to be involved in the release of the Health Council of Canada’s latest report, I struggled with my decision to write about the financial aspect. It's not something I've discussed before, despite my goal of emotional honesty on this blog. I've written about some pretty intimate details about my health and my thought processes about disability, RA and pretty much anything related to that, but aside from the occasional joke about being a starving artist, never about the money. Because you don't, do you? Talking about the money is just Not Done, it's not polite. It's not polite to talk about how much you make and it's definitely not within any rules of etiquette to discuss having trouble paying your bills. Because you're supposed to be able to manage financially and if you can't, it's a personal failing and there's a hefty dollop of shame involved in it.

Except that makes no sense at all in the context of having a chronic illness or disability. Not only does your disability affect how much - or whether - you can work, but as both I and RA Guy wrote about on Tuesday, RA is expensive. How much money do you need to earn in order for a monthly bill of $400 worth of medication (for instance) not to have a serious impact on your budget? It doesn't make sense to feel guilty about not being able to manage that or feel shame that you have a debt you can't pay off because of a health condition that is beyond your control. Yet, there they are, both the guilt and the shame.

And that's why I talked about the money. It's why I'm grateful that RA Guy and Dave also chose last week to talk about the money. Because we need to start talking about these unreasonable costs and the impact it has not just on individual lives, but in the larger picture, on the economy and our society. We live in a culture where we are expected to pull ourselves up by the bootstraps and where those who can't are viewed with a certain amount of judgment. I'm not going to start ranting about why that is wrong in general (because someone else did so brilliantly), my argument today is specifically regarding those of us who live with chronic illness and disability.

I believe it is inappropriate, unreasonable and downright discriminatory to apply such expectations - and the judgment that usually follows close on the heels of those expectations - to people who simply cannot go out there and scrub other people’s toilets in order to financially pull themselves up by the bootstraps. Because most of us would do just that. We'd rather be working, but we can't and then what do you do? When the only thing that stands between you and improvement and increased independence is the money that you can't make, Is it fair to be punished financially or jeopardize your health because you can't afford the meds you need?

We must talk about the money. Not talking about the money is what necessitates something like the Hardship Fund. Not talking about the money is what allows our City administration to put the Hardship Fund in danger. Not talking about the money puts people's health in jeopardy - according to the Health Council report, 23% of sick or Canadian had skipped doses of their medication or not filled the prescription because of cost. Not talking about the money ends up costing us more because when people don't take their meds, their health suffers and they need to use the health care system more.

We need to talk about the money. We need to take a good, hard look at what we believe should happen in case of serious illness, chronic illness or disability, both from an individual and a social perspective. If we no longer practice putting people on an ice floe when they can't fully take care of themselves, we as a society need to step up. Because if we don't, we may as well start looking for the nearest body of water.


The shameless self-promotion bit: To see/hear my interviews from last week connected to the Health Council of Canada report, the segment with me (and my double chin) on Global News National is here (starts around 12:25). This Thursdays, I was on the John Biggs Show on CJBK Talk Radio. The podcast on that interview is here. Also check out the podcast with Dr. Dennis Kendall - he talked to John after my interview and made a lot of excellent points. You may also want to read my post for the Health Council of Canada that started it all, The Cost of Chronic Illness.
   

Saturday, December 10, 2011

Everything - A Re-Post

   
On Monday, in the Health Council of Canada video I talked about the consequences of not being able to get the medication you need because of cost. Yesterday, I posted my guest blog for the Help Council of Canada about the cost of chronic illness. Today, I'd like to shares something I posted back in the beginning of The Seated View. This piece is about what can happen before and after getting the medication you need and the importance of timely access to financial assistance:


In December of 2004, I looked into the abyss and the abyss looked back.

It’s hard to write about this – doing so with any emotional truth means going back to a place I’d rather never feel again – but there’s something I’ve wanted to say for a long time and it needs a bit of a back story.

Pain is an oddly isolating thing. It can’t be shared with other people, can’t be described in any way that comes close to communicating what it feels like. It isolates geographically and socially – it hurts too much to go out, spending time with friends takes too much energy and when touching hurts, displays of affection do also. When it gets loud enough, you lose your ability to think and focus.

Early on in 2004, when my arthritis was flaring, my rheumatologist and I decided it was time for the big guns. The biggest, in fact. Enbrel is new and expensive and costs about $23,000 a year, so I needed help from the Trillium Drug Program. When the government gives you tax payers’ money, they’re careful. So as my application slowly meandered its way through the bureaucracy, my life gradually went belly-up.

Things were getting steadily worse and in September, Vioxx – the only anti-inflammatory that I could tolerate and which kept things somewhat tamped down – was recalled. My arthritis flared stronger, blazing unchecked through my body, destroying my joints even further. Painkillers only masked the symptoms and only partly, without preventing the damage.

I’ve struggled with finding a way to describe my life at that time and I don’t have the words for it. There’s no way of talking about it that doesn’t sound like melodramatic hyperbole. I felt like my body was disintegrating, shutting down. It was every kind of pain I’ve ever had and all at once. Pain wrapped me in a sheath of flexible, frosted glass, muting the words of loved ones, a foggy barrier between the world and I, slowly closing in, narrowing my world until I felt shrink-wrapped by it. I felt as if I was a prisoner in my body, held in a far-away place, tortured around the clock, screaming, screaming, screaming, too far away for anyone to hear me and even if they did, they could do nothing to help me.

See? Hyperbole.

Christmas is my favourite holiday. Throughout my life, it has been magical, each year feeling like somehow, my family and I enter a parallel reality, one where love is palpable and radiant. Last December, I knew it could be my last Christmas, that my life, as it was, could very soon not be there anymore. I knew that if I didn’t start Enbrel very soon and if it didn’t work very quickly, my life was over. I knew that at in tops 6 months, I’d either be hopped up on morphine in a nursinghome or perhaps my body was indeed shutting down. I felt as if I had terminal arthritis.

I have never been so aware, so fully conscious of everything as I was on Christmas Eve. I opened up as far as I could and absorbed the laughter, the love, the joy in the room and put the memory in a special place in my soul, for comfort, for remembering, to be a safe place to go if I had to leave.

By New Year’s Eve, I felt erased, stripped, burned to a cinder. The pain had taken everything.

Shortly after New Year’s, I was approved for Trillium and on January 7, 2005 at 3:35pm, I received my first shot of Enbrel, went back home for a rest and at 6pm, I woke up a different person.

It’s as simple as that. And as complicated.

Enbrel worked quickly and changed everything. Within a few weeks, the pain levels had subsided drastically, the swelling went down and I became stronger and stronger. Every day, I realized a new thing that I could do and I would laugh and laugh with the joy of it.
Then it spread. As much of the pain left, there was enough room in my head that I could think again, remember things again. I was hungry, starving – for knowledge and for food. I could eat again, things I hadn’t been able to eat for ages. As time passed, my body developed an almost aggressive quest for health, wanting only real food, craving protein and rejecting sugar (I haven’t had a cookie in six months). Strangest of all, how I see things have changed. The world went from black-and-white to technicolour and everything seems a miracle of perfection. Once, when shopping, I was nearly brought to tears by a pepper, such a perfect blend of yellow and orange that it looked like late afternoon summer sunshine in a February pepper. I regularly get lost for hours looking at blade of grass or a feather or the sun glinting off water.

It’s overwhelming. I feel reborn, new, vulnerable, raw, open, intense. Everything’s so intense. I don't know how to be this aware of the beauty of the world and still be a well-functioning human being and so sometimes, I hide in the old me for a few weeks while I catch my breath, then jump back in and fly.

Last year aged me. I feel older, look older – my face is marked by lines that didn’t come from smiling. I feel fragile still. It scares me how long it is taking to get my body back to where I want it to be, it makes me realize that I didn’t just feel like I was very sick. I was very sick.

At times, I get besieged by abject terror at the thought of losing it all – I am not yet done with this gift. At times, I want only to hide from it – it’s too much, too strong, too deep a mystery. I feel as if I’ve been razed, burned to the ground, had nothing left but ashes and then… then someone gave me back my life and a second chance. I take my second life seriously. I see myself as under construction, body and soul, becoming the person I’ve always wanted to be. I work hard to become healthy on all levels, to change and grow every day, to be mindful of the glory of it all and to not resist change, but embrace it.
Mostly, I am madly in love with being alive, delirious with the ability to think and communicate ideas and truth be told, probably a bit unbearable. I feel drunk with it and as most drunks, I have a lot to say.

Every time I get a shot of Enbrel, I send out a silent thank-you to the taxpayers of Ontario.
I am your tax dollars at work.

Thank you for my life.


December, 2011 note: it has been seven years almost to the day since I got my life back and I am still living inside the miracle. I still receive funding financed by taxes to pay for the $40,000 Humira costs every year. Without it, I would be dead. All these years later, I am still grateful every week and sometimes every day. I would like to say again to all of you who pay taxes in this wonderful province of ours: thank you for my life.
  

The Cost of Chronic Illness

   
This week, I'm one of the spokespeople for the Health Council of Canada in relation to the release of their latest report on how Canadians with chronic diseases rate their health care system. Today, my guest blog appears on their blog site. I wrote about the cost of chronic illness:

When we talk about the cost of living with a chronic illness, it usually refers to the impact on quality of life - the ability to participate in your family, community and work.

Living with a chronic illness is also expensive.

I am lucky there's a financial assistance program that covers the very expensive medication which has given me back so much of my life. Because of this I can work part-time, give back to my community and be there for my family.

Even so, other medical conditions pop up, as do side effects from the drug that gave me back my life. More medications are needed, some only covered in generic form and others not at all. Sometimes, the generic don't work as well as the brand name. I have two choices: endanger my health by not taking the meds or pay for the brand name myself. Every month, they cost me $400 I don't have.

Treating a chronic illness isn’t just about drugs. Physiotherapy can help maintain my level of function, but costs $80 for one treatment. Without it, I have high pain levels that can reduce life to just getting through the day. With it, I go deeper into debt.

I have used a power wheelchair since I was a teenager. It is my legs, my mobility and without it, I would be confined to bed. Because I do not receive social assistance, I pay for maintenance and repair myself. This past summer, it cost me $2000.

I am a lucky woman. I have good medical care and medication, treatment and equipment that give me the opportunity to live a wonderful life even with a severe chronic illness and disability. I am also caught in a vicious circle of necessary expenses that I cannot afford. Without them, I risk my health and lose the ability to live my life. With them, I sink forever deeper into debt.

   

In Which I Become a Spokesperson

   
Today, the Health Council of Canada releases their latest report called “How Do Sicker Canadians with Chronic Disease Rate the Health Care System?” This is not the first report they have released - their mission is to "[t]o report on the renewal of Canada's health system, focusing on best practices and innovation." I love this country.

Anyway, a couple weeks ago, I was contacted by someone I know at The Arthritis Society wanted to pass my name along to the Health Council. The Council was looking for spokespeople to put a human face on the facts of the report and before you knew it, I was at their offices in front of a camera. Looking only slightly like a deer in the headlights...
  
  

Normally, I prefer being behind the camera, but this is important enough that I got over my stage fright and went for it. However, not before I turned the tables and took a picture of the other side of the room. Meet Cameraman Michael Strange, Media Specialist Terry Glecoff and Senior Policy Analyst Sukirtha Tharmalingam who was involved in preparing the report.


The report is based on results from the 2011 Commonwealth Fund International Health Policy Survey of Sicker Adults and if you're interested in the details, you can download the report in PDF format here. It discusses a number of aspects related to the way people with chronic illness interact with the healthcare system access to care, affordability, timeliness, coordination and patient engagement.

I often have opinions about the invisibility of people with chronic illness and disability, but today, thanks to this report, we are out there, telling our stories. Six Canadians who live with chronic conditions are writing guest blogs about their experiences for the Health Council this week - you can read them here.

And then there was that thing in front of camera. Three of us met last Monday and one after the other, were interviewed by Terry. This is Jordan Bruce, writer of In the Stroke of Time.


One of the things I learned from this experience is that writing is a completely different way of communicating been talking on camera. Sure, I've always known that before, but in theory. I like to publicly thank Terry for guiding me through it and for helping me re-start my brain when it got stuck halfway through. Thankfully, he edited that part out (if there's ever a DVD release, it'll no doubt be on the gag reel).

This is the video (also available on the Health Council ofCanada’s YouTube channel). It's awesome.



   

Wednesday, December 07, 2011

Anger and Shame

   
As you've no doubt noticed, I've been pretty angry lately. It happens when I'm very tuned into political issues. And it happens a lot when I'm tuned into political issues that relate to vulnerable populations (usually double levels of injustice). Lately, I've been blogging a lot about disability issues and well… This is one of those issues where the political is very personal. I was starting to consider focusing on unicorns and rainbows, but then Saturday happened and I got all energized again.

To the best of my knowledge, today is the day that Toronto City Council will debate eliminating the Hardship Fund. Somewhat ironically, this happens mere days after the International Day of People with Disabilities and just one day before Human Rights Day. Because nothing says we support human rights and services for people with disabilities like axing the fund that helps people with disabilities get the kind of equipment they need, but can't afford and which isn't covered elsewhere.

And I'm angry. Actually, I'm so mad I could spit. Part of this anger is fueled by the discussion I had with other attendees of the International Day of People with Disabilities – y’know, the one that wasn't recognized in any serious way by our fair City. The day proclaimed by the UN and celebrated around the world. Except in Toronto.

And I was especially angry after I found out that an estimate of the cost of celebrating this day the way it's been in the past lies around $10,000. I was also especially angry to find out that a lot of smaller grants to disability organizations have been cut - $5000 here, $10,000 there. Money that goes to programs for those in our society who don't have a lot of power or make it into the headlines. Money that begins to fill gaps in services, protect rights and make the invisible visible. I was angry because to me, this confirmed a feeling I've been having for a while. The feeling that there is an unspoken effort from the current City administration to erode those services and rights because we don't have a lot of power or make it into the headlines. And I'm not unaware that this kind of statement gets people thinking I'm a bit paranoid. Lately, I've been wondering if perhaps I was, if I’d gotten so far into the politics of it that I had lost sight of reason.

We did make it into a headline in the Toronto Star onSaturday in an article that confirmed to me that I hadn’t. In this article, it is mentioned that our esteemed Mayor had attempted to shut down the City’s accessibility advisory committee, but backed off when it was pointed out to him that having one such committee was required by law. This article also mentioned that Councillor Adam Vaughan, who is chair of this committee, had not been aware that the International Day had been canceled. Vaughan is quoted as saying "[t]here’s been a drift, if not a concerted effort, to move away from support of people in this city with disabilities.” I heard at the gathering on Saturday that other Councillors also were not aware that the Day was canceled, but when their constituents told them, they went on the warpath.

So I'm back to being angry. Because to me, this bit by bit erosion of grants, services and support for a particular population is discrimination. Deliberate? I'm not going to make any statements about that, but I don't think it matters. The end result is discriminatory. And this is the point where people start getting uncomfortable, because  the D-word feels somehow wrong to many when applied to disability. Sometimes, there’s downright pooh-poohing, a dismissal that such a thing happens. Which I still find odd - very few people dispute the fact that discrimination happens against racial minorities or women, but it somehow inconceivable in the context of disability. What if grants to women's organizations or agencies for racial minorities were systematically cut? What if Black History Month was canceled?

I would posit that this kind puzzled reaction to the issue of discrimination comes from the same place that expects people with disabilities to be nice and quiet. On Saturday, Dave told the story of speaking to the City’s diversity department staff about the problems in not recognizing the International Day of People with Disabilities. The good news is that this staff did step up, did take action and do the right thing and it's a very big victory. However, my point relates more to the way they seem to be surprised that he was angry. Because being angry is very definitely not part of the role of disabled person. We are supposed to be nice, unassuming and ever grateful for the smallest crumb thrown our way and if you don't believe me, you should try being on the receiving end of services for people with disabilities. 

On Saturday, we networked. We shared information that made it clear that misinformation had been the name of the game around the International Day. There were very different stories about statements made by the City and what had really happened. And my reaction to this is to not sit back down (metaphorically) and be quiet while someone pats me on the head. My reaction is to get angry and a lot more in the community are getting angry, as well.

It's about time.

The Boy said something brilliant about anger: anger unites and shame provokes change. We need to unite our community, each small group linking with the others until we become a force to be reckoned with and that effort is fueled through anger. Creating change often takes an effort to shame the institutions and administrations that try to silence us, to render us invisible and to erode the rights we've fought so hard to establish. Think back on any successful movement to create social change and some aspects of that process will include shame. I would like to believe that it's not necessary, that as reasonable people, we can talk about such things and come to a reasonable conclusion. However, recent events prove that this is not the case. Because whether it is in our City or on a national basis, people with disabilities are not a priority.

And we won't be until we make a lot more noise. Noise that gets us into headlines. Noise that gets every reasonable able-bodied person out there to sit up and take notice and join us. Together we will make change happen.

So get angry. Meet you on the barricades. They'll be accessible.
  
   

Monday, December 05, 2011

International Day of People with Disabilities

    
Saturday was the International Day of People with Disabilities. This is a day proclaimed by the UN and this year, the theme was "together for a better world for all:including persons with disabilities in development." this became particularly amusing (but not in a good way) when you consider everything that's happened in our fair city recently. The City cancelled its participation in marking this day and on Wednesday, Council will consider axing the Hardship Fund. All very inclusive, don't you think?

Anyway, the community partners decided to go ahead with a celebration of the International Day and announced that the gathering would be between 12:30-2PM. At the last minute, community pressure and the valiant efforts of Dave from Rolling Around in my Head brought the City back into the celebration. They wanted to move it indoors to the Member's Lounge in the Council Chamber, but the community members had concerns about the logistics of this - it was simply too late to change locations, so the lounge became the warm-up area.

Because it's Toronto. In December. Which is cold.

The gathering was by the Winston Churchill statue, next to a construction site. When we got there, we saw a woman with the most fabulous outfit - very celebratory!


We wandered towards City Hall (this is the picture that separates Stra Trek: The Next Generation fans from all the rest)


and found the Council Chamber. We felt this set-up with a recycling can on each Councillor's place said much. Not sure what, though.


The Lounge was accessible and I had a moment of pretending I was the Mayor. Not sure it'd make for great TV news, though.


This would, though


The celebrations is Variety Village are usually attended by 2-300 people, with dignitaries, sound system, ASL interpretation and attendants, food, tables and greenery. This year, because the City had pulled out, there were a small clump of disabled people sitting in the cold. Unfortunately, I didn't see any mainstream media there. Would've made a great story. I was wrong - the Toronto Star did a story about it.


Winston had opinions. Didn't share them, but his posture speaks loudly.



One really great thing did come out of this. A bunch of us congregated in the Member's Lounge and talked. Shared interesting information, philosophies and email addresses.Made connections and plotted just a smidge. I'm so very glad I went.
    

Thursday, December 01, 2011

Caregiving for Dementia: How to Support with RA

   
November was Alzheimer's Awareness Month, as well as National Caregivers Month in the US and HealthCentral marked it by doing a special project where writers from different sides wrote about dementia and Alzheimer's. Earlier this month, I wrote about dementia caregivers' increased risk of developing autoimmune diseases and this week, I take a more personal view of supporting people living with dementia and their caregivers even though your body doesn't allow you to do anything physical:

"For three years, we watched my father disappear, moving a little bit further away from us every day. He'd had a large stroke and managed to battle back from that, but then came another. And another and another, small TIAs and seizures happening often enough that the brain damage continued, giving him vascular dementia. It wreaked havoc on his mind and body and devastated our family."

You can read the rest of the post here.