Annie's Dandy Blog

Which is it?

2012-01-19T20:38:00.000-08:00

Nothing stays the same. The more things change, the more they stay the same. Which is it? Both, I suppose. Love; hate; greed\; empathy; lust; sex; birth; death; inventions to improve life, inventions to destroy it; famine; war; fighting over land, religion, differing points of opinion - and everyone scrambling for the simple, never-ending pursuit of happiness. Different players and environment but, basically, it's the same script.

One other thing that has remained constant throughout time, and yet keeps evolving as well, is a person's yearning for self-expression. Whether in personal appearance or in deed, people strive to show the world who they really are, and how they view the world in which they live. Sometimes the mode of self-expression is met with smiles, warmth, and congratulations. Other times it is met with frowns, ridicule, and downright nastiness!

On Boxing Day, I went and got a tattoo. It's a drawing of a raven, its body forms the word: "Nevermore". Underneath reads: "Sept 17 18 19 RW/FZ". (Actually, I have to get it slightly altered because right now it says: "RWIFZ", which is rather ridiculous, as you will see as you read on.)

Why did I suddenly get a tattoo? What is the meaning behind it? I'll tell you!

On the Thursday before Christmas, I accidentally clicked on an icon on my Ipad, and what popped up? The photo of me meeting Gail Zappa during my Baltimore trip. She had been speaking at a fundraiser to save Poe House, and had said that after Frank's death she'd felt as if seven ravens were looking over her, protecting her. Edgar Allen Poe wrote the famous poem "The Raven", where the word "nevermore" appears repeatedly. The poem speaks of a lost love, his Lenore.

It all seemed so right, so inevitable, that I should get a tattoo of a raven, with RW (Rob's initials) and FZ (Frank's initials), as well as Sept 17, 18, 19. Those dates, you see, have a double meaning. In '09, Rob spent his last 3 days in the hospital on September 17th, 18th, and 19th. Last year, I was in Baltimore, on September 17th, 18th, 19th, for the FZ Festival. And after searching for two minutes on the internet for images of ravens, I found the Nevermore Raven. Perfect, I thought, it ties everything: Rob, Frank, Poe, Gail, Baltimore, and the tragedy of lost love. Death=Nevermore....

My friends Dobrila and Yuula came with me when I got my tattoo. They took turns holding my arm steady while the tattoo artist did the work. It hurt like a bastard, as I knew it would, but it was also exhilarating to know I could stand so much pain for two hours straight. I felt so empowered, like I could face any kind of pain head on. It was cathartic too; the pain of grief still wears heavily, like an albatross, but now I feel I can deal with it better.

For the most part, people have given me positive responses to my tattoo. Even my 86 year old mother was cool with it. "Oh, Annie," she said with a smile, "I never know what you're going to do next!"

Other people, however, have made it their personal business to tell me that they think it was unwise for me to have gotten a tattoo. They bring up the risk of infection, fading, and the general "tackiness" of how tattoos appear. Rage boils inside me when I hear these things! It's none of their business! And, when people say it's ridiculous for me to have a tattoo at my age - watch out! I detest ageism almost as much as ableism!

All of this prejudice against my tattoo has made me start to wonder: Is my body actually my own to do with it whatever I like or does it belong to society as a whole? Which is it? Certainly my initial gut reaction is to say Of course this is 100% my body and to hell with anybody who says differently! However, in reality, what I can actually do with my body is limited by the medical system, the laws that govern us, and societal pressure. Taking drugs, doing sex work, "unnecessary risk taking" (going over Niagara Falls in a barrel, for example), acting "weird" or just seeming to be "out of the norm" can land you in prison or in an institution.

And then there's the media. I can't even count how many shows and movies make fun of people who are over-weight, under-weight, intellectually challenged, are from different ethnic backgrounds, are "too sexually active", have different sexual orientation/preferences, wear off-beat or "un-cool" clothes or have piercings. The negative impact from this judgmental, holier-than-thou attitude is horrific because it 1) shapes people's expectations of how everyone's supposed to look and behave, and 2) it gives society the false idea that it's ok to be mean and judgmental of people who are different from us.

Well, in closing, I'd like to say, Vive le Difference! Don't listen to those judgmental shmucks, be yourself and feel free to express your individuality!

Oh yes, and I dyed my hair red, and I'm going to fix my tattoo so that it doesn't look like I'm saying Rob Warenda is Frank Zappa. Although I have never seen the two of them together...

Mind the Gap!

2011-12-07T13:52:00.001-08:00

As is my wont, my mind has been a great whirlwind of thoughts, ideas, and emotions. Let me give you an example of how the thought process of my mind works:

I'm almost finished another painting. Thank god! Only three more left to do.... Three more paintings before Christmas?! Yikes! Am I NUTS taking on so much work? No, no, I love it - it makes me feel alive! I also need to order more cards and calendars and jigsaw puzzles and giclees. Then I have to take pictures of everything and put them all up on my website and the Etsy website, and advertise on Facebook and Twitter......

It's Christmas in two weeks. How can that be? I love Christmas. I hate Christmas. I love Christmas. I hate Christmas. I love Christmas. Parties, getting together with close friends. Eating, drinking, laughing. I hate Christmas. I love Christmas. I hate Christmas. Memories of being in debt, fear of sliding down that steep slope again. Living in poverty has made me cynical. "Simpler Times" - were they ever real or just an illusion? I love Christmas. I hate Christmas. I love Christmas. I hate Christmas. Childhood memories make me smile and feel nostalgic. Memories of Rob at Christmas make me smile and feel nostalgic. They also make me weep and want to rip my heart out to escape the pain of missing him.

Yesterday, after dinner, I was thinking about everything I've said here and more. And as I ran my tongue over the sensitive gap in my mouth where, until last Thursday, my decaying tooth had been, I thought to myself, This is it! This will be what I'm going to write about in my next blog entry. Not about my missing tooth exactly, although that was an experience in itself! (Forty-five minutes of the dentist yanking and yanking at it, only to have him end up drilling into the bone and cutting my gum. Like the rest of me, that tooth was one tough and resolute little bugger!) I want to talk about change (sometimes difficult, sometimes not), and the slow, resigned way it is often accepted in our daily lives.

Apart from taking pain killers and penicillin, and reminding my employees to "mind the gap" when they help me brush my teeth, I've gotten used to the new way my mouth feels.

Loblaws has taken over Maple Leaf Gardens. They had their grand opening on December 1st. I've been there twice now, and both times I started crying because I knew Rob would have been so psyched to go inside and explore. (The change over from abandoned sports arena to glorified grocery store has been in
the making for at least 8 years! Both Rob and I would groan and exclaim, "When will it ever be finished?!")

And finished it finally is; all bright, shiny, and new. And yet, for all the changes inside, I can still see and hear the crowds rushing past Rob and me in order to buy tickets and WWF (later WWE) merchandise, or to get to their seats. Maple Leaf Gardens wasn't like SkyDome (the Rogers Centre now): a person in a wheelchair could sit close to ringside and not be labeled a "fire hazard". Sometimes Rob's cousin Shauna or nephew Corey would come with us, and we'd try to meet the WWF wrestlers before they went in to wrestle. We met Hillbilly Jim, and I was amazed at how enormous he was. I had drawn a picture of Hulk Hogan and Rob tried his damnedest to have me me meet that famous wrestler and give him the picture, but security was too tight and it was just impossible to do. It was the early days of our relationship, and Rob said, "I'd do anything for you, Sweety! You're the love of my life."

That's what Maple Leaf Gardens means to me. And now it's a fucking grocery store!

Such is life, though. Nothing stays the same forever. I'll get used to my tooth being gone and I'll soon stop crying when I shop at Maple Leaf Gardens. I'll never get used to missing Rob, though.

We, as human beings, adapt to change and, for the most part, that's good. However, there are things that we shouldn't just shrug our shoulders and accept. Oil spills, global warming, nuclear power plant disasters to name only a few.

My friend Amy told me about an article she recently read about China and its Emperors. Every time the country got a new ruler, its people were forced to abandon the old currency from the previous Dynasty and accept the new one. As you can imagine, this system was troublesome, to say the least, especially if Emperors died or were killed off during a short space of time. Its people rebelled in a creative way. They refused to use the country's currency; instead, they traded with silver. The rulers knew they couldn't stop the people from doing this, so they made silver the official currency.

In this time of rebellion and upheaval, this aforementioned story gives pause for consideration. People frustrated with the economy and finding a peaceful, creative way to make things happen.

Solidarity with all Occupiers and activists who seek to make positive changes to the world.

My Time in Baltimore

2011-09-24T17:55:00.001-07:00

As my dear friend Aaron would say, " I did it!" Yes, I went to Baltimore, Maryland, just as I had planned on, dreamed of, and dreaded doing for the past 6 months. It was probably the hardest and yet most beautiful experiences of my life.

Five of my closest friends came with me on this momentous journey. They were wonderfully supportive, knowing that I wanted a balance of honouring Rob and his idol Frank Zappa, and seeing some of the art galleries and museums in Baltimore.

We got up on the 17th and ran out to the Frank Zappa Day Festival. Actually finding the library where the bust of Frank was was rather difficult. Who knew there would be two Enoch Pratt Free Libraries in town?

I had been ok up until I saw that beautiful bust, and then I let loose and bawled. I wanted Rob to be there with me so badly and it didn't seem fair that he couldn't be. Rob would have been so thrilled to be there. He would have played Mr. Nonchalant, but I, who knew him better than anyone, would have seen the sparkle in his eyes and that spring in his step. As I sprinkled a very, very light dusting of Rob's ashes around the base of the monument, I consoled myself with the idea that maybe Rob's spirit was there. Hell, maybe Frank's spirit was there too.

We started looking around the grounds of the festival and found many wonderful and unique crafts. Some, to be sure, had a FZ theme, but a lot did not. I bought myself a large magnet that said: "Legalize Marijuana in Baltimore." My friends bought me a beautiful necklace and earring set.Somebody found a program of what was happening that day, and one of the things that piqued my interest was the fact that inside the library there was a poetry reading to raise money for the Poe House, a community space dedicated to local poets in the memory of Edgar Allen Poe, himself another wacky Baltimore native. Both Gail and Ahmet Zappa were to be reading at it. I love poetry and Poe is one of my favourite writers, but the icing on the cake was the chance to meet Gail and Ahmet!

My friends and I were escorted inside and I was told to go sit beside Ahmet, in the front row. Aaaaahhhhh, can you believe it?! I was so close I could have reached out and touched him, but I exercised restraint. Gail was sitting on his other side. Because of this situation, and because of the emotional turmoil I had just been in sprinkling some of Rob's ashes, I asked for a lorazepam.

The poetry was wonderful. Especially the first guy, who dressed and spoke theatrically and recited Poe's "The Raven." The poem that Gail read was one of my favourites too. "Evelyn the Modified Dog" was written and sung by Frank Zappa. Gail read it as a poem and it worked really well that way. She made the point that song lyrics really are poetry.

After the reading I saw Ahmet running off. That was disappointing because I had planned to buy his book and get him to sign it. I approached the table to buy a book anyway and ran into the aide to the mayor of Baltimore. At first she was trying to rush Gail off to the next event and then she realized who I was. "Oh Anne! You must be Anne! ... Gail, this is Anne, the woman I was telling you about!" And then the moment arrived ... I got to meet Gail Zappa. And what a meeting it was!

She was so gracious and kind and down-to-earth. And she got me. It's rare for strangers to immediately get me like that. When I started crying and told her that I wished Rob could have been there because he loved Frank so much, and that I missed Rob so much, she started crying too and told me how much she missed Frank. It was a really incredible moment to share. As it that weren't enough, she gave me five of Frank's CDs, including one that has yet to be released. What a wonderful person!

My friend Michelle pulled down a copy of the festival poster for me, and Gail kindly signed it for me. I also gave Gail a postcard and notebook I had made with the painting of Frank I had done on them. She seemed thrilled with them!

After that, my friends and I went to see a documentary on the making of "200 Motels" - a film Frank made in the 70's. I had heard that Ahmet would be there, and I thought I could get him to sign my book, but he wasn't there. Instead, Gail was! And after the film she did a Q&A where she proved to be just as thoughtful and grounded as she'd seemed when we first met, and sassy too!

The film had been shown at a gallery space called The Creative Alliance. On my way out of the film I ran into the Artistic Director of the gallery. She explained the exhibit on the main floor and asked if we wanted to see the upstairs exhibit. I told her that we didn't have time because we were going to dinner and that I was an artist myself. I gave her one of the Frank Zappa postcards I'd made. Then she encouraged me to become a member of the gallery and to submit a proposal for an exhibition of my work in the upstairs space!! She said that normally that space focuses on local artists, but that it was definitely worth applying. I came up with the brilliant idea of proposing an exhibit that centres around this trip to the Frank Zappa festival, showing the paintings I did and all the video I made in lead up and during. Maybe it could be on during next year's festival and I could get a free trip down!

On the 18th of September we went along the city's beautiful waterfront looking for good and cheap food to eat. And then, we strolled over to the American Visionary Artists Museum, an art gallery dedicated to quirky and undercelebrated works by self taught artists. We almost didn't make it inside because the outside of the main building (there are three) was so beautiful - completely covered in glass and mirror mosaic and surrounded by glass and mirror mosaic-ed sculptures!

There were even more cool things inside, like a life-size sculpture of a naked caveman made entirely out of wire. There was also a spectacular rotating bejeweled sculpture of Icarus suspended in the centre of a spiral stairwell, flying into the sun, wearing nothing but his wings and a ruby red bejeweled thong! Downstairs we saw (and some of us sat on) a bench covered in whoopie cushions, followed by a series of small artworks all dedicated to flatulence. I was surprised by one thing I saw at this particular exhibit: A photo of Queen Victoria with her favourite "fart jar". Apparently, she liked to put her farts in jars and keep them. Because of this somewhat weird fact, jars became better and better designed.

That night, back in our hotel room, we ate take-out, listened to music and to some of Rob's podcasts. Not everyone stayed up until 3:30am like I did. I stayed up for a very special reason. Exactly two years earlier, at 3:30am on September 19, 2009, Rob died and I couldn't be there with him. If spirits exist and the time of their death matters to them then maybe Rob knows I wanted to be there for him and that this year, in a way, I was. We toasted him and I hope he could feel all our love for him. I mean he sure would be silly not to know how we feel about him since we orchestrated this entire trip around a celebration of his life ... but, he was a pretty humble guy.

The Countdown is on

2011-09-11T22:07:00.000-07:00


"Zappa"

Yes, the countdown is definitely on now! Five more days, and then I'm on the road to Baltimore to the Frank Zappa Festival, where I can honour both Frank and Rob.

The hotel and van are booked, and the travel insurance purchased. Laura is looking after the cats while I'm away, and I've written out a list of all the things I need to be packed. I like to be organized! If I don't feel like I'm organized I become panicky. I even jolt awake in a cold sweat some nights, worrying about everything!

I got a phone call from the Mayor's office in Baltimore a few weeks back. That was cool! They had read the email I sent to Mayor Stephanie Rawlings-Blake asking for advice on cheap/accessible hotels and other fun/accessible attractions to see besides the FZ Festival. The Mayor's aid said she could get me into a fancy hotel for a reasonable price. At first I was thrilled, but then I compared prices and the Best Western Hotel, which I had booked 3 weeks beforehand, had better rates than the one the Mayor's aid was suggesting. So, I wrote back and said, thanks but Best Western is good enough for me.

Five more days..... Am I happy? Am I excited about it all? Yeah... sort of. I'm sure I'll have some fun. And, of course, I'm taking cool, great, fantastic, brilliant people with me! People I love.

And yet, I can not seem to get over this overwhelming sadness within myself. Rob should be here to share in the whole experience - from start to finish - the planning, the arrangements, the trip itself, and the actual FZ Festival. I can see him now, trying to be nonchalant and yet secretly overjoyed. That was Rob's style/ He would also try to look on the pessimistic side of things in order to brace himself for disappointment. That was Rob's style too.

I miss Rob so much! There is not a day that goes by that I don't think about him and wish that he was still here.

Nine more days until the second anniversary of his death. Two years - how can it be?

"Love of my Life"

Bound for Baltimore

2011-07-20T21:14:00.000-07:00

"Love of My Life"

Last year, on September 19th, 2010, I found out that this date was the very first Frank Zappa Day in Baltimore. Sadly, this date also commemorated the first year anniversary of my husband Rob's death. Because Rob had always idolized Frank Zappa and his creative genius, it seemed like a huge sign that I should make a journey this year, in honour of Rob and in honour of Frank, and go to the second annual Frank Zappa Day.

I want more than anything in the world for this to happen! A couple of years before Rob's death, he would tell me every time when Zappa Plays Zappa came into Ontario how much he wanted to go see them play, and I would tell him that it all depended on our finances. Being on the pittance that ODSP gave us and drowning in debt, it, unfortunately, just never happened. For Rob to see Dweezil Zappa and some of Frank's old band mates perform his favourite songs live - that would have made him deliriously happy!

The music of Frank Zappa was always in our lives, right from the beginning. When Rob and I first started dating, he gave me a cassette tape of Frank Zappa and the Mothers of Invention, and asked me to choose my favourite songs from it. I chose "'The Closer You Are", "You Are What You Is", "Bobby Brown" and "Sharleena." Rob and I decided "Love of my Life" should be our song, for obvious reasons. When I was pregnant, we were going to name our daughter Sharleena. Rob wanted to name our son "Greggery Peccary," but I drew the line!

So, on September 17th, a group of friends and I are driving down to Baltimore and staying until September 19th. It's going to be cool, great, fantastic, brilliant!!! We're going to have a ball! I want to play Zappa music all the way there and back, and I'm going to film the whole experience so I never forget it! Actually, I've been making a few short films to get ready. Here's where you can see what I've done so far:

http://annethevideo.tumblr.com/

I know I've said it's going to be fun and brilliant, sure, but it's also going to be damned hard. It'll be the two year anniversary of Rob's death - how can that be? Well two years or twenty, Sweety, you'll always be the love of my life.

Speeches, speeches, speeches!

2011-04-11T09:32:00.000-07:00

What have I been doing lately? Writing speeches, speeches, and more speeches! I wrote three in March and one in April, all on vastly different subjects.

The first one was for the AFAC (Art for All Canada) conference at Metro Hall.

Here is that speech:

Whenever people ask me how long I’ve been painting, I always smile and reply, “Ever since I could breathe.” My name is Anne Abbott, and I create my artwork by painting with my right index finger. To my knowledge, I am the only artist who strictly uses this method and no other. Because I have Cerebral Palsy, a condition that affects a person's motor skills, this is the only way I am able to paint.

I've always had a profound love for art, ever since I was a small child. As a toddler, my mother would sit me in my highchair and give me a pad of paper and a paint set, and just let me go to it! She thought it would be a good diversion for me while she was doing the housework, but it would become one of the greatest passions of my life.

My family and friends encouraged me to keep going, to develop my art. My parents especially gave me guidance, praising me, of course, and giving me ideas of what things to paint. They also gave me constructive criticism and helpful hints on how to improve my craft. It also inspired me to know that both my grandmother and great-uncle had been artists. I felt as if I was following in their footsteps.

In public school, there was a weekly art class, and that piqued my interest even further. Eagerly, I absorbed all of the different types of techniques taught to me. I was even introduced to clay, kilns, paper mache, and making collages, but although these things were fun and inspired creativity, they just didn't hold my interest as much as painting did. I suppose one reason for this would be the fact that, except for having assistance in setting up the canvases and paints, I am able to do all the work on my own, and thus, lose myself within the process of making art.

There was about an 8 year gap in receiving any kind of instruction in art. This was both liberating and restrictive. Yes, I enjoyed experimenting with colours, shading, and different styles, and I was confident in the progress of my work. And yet, I felt that I could benefit from some guidance so that I could improve my craft even more.

When I was 18, I heard about Arts Carousel, a non-profit organization whose focus was on giving people with disabilities a chance to realize their creative potential. One of the instructors offered to come to my home and give me 10 free art lessons. His name was Michael Seary, and he was good to his word about giving me the free lessons. In fact, he ended up tutoring me for ten years!

Having an instructor who was an artist himself and being able to give me so much of his time, was a real bonus! I learned a lot more about art than I ever had before. I began experimenting with oils, water colour, acrylics, different grades of paper, and found out, by trial and error, which worked best for me.

Besides teaching me techniques about how to improve my craft, my art instructor arranged for me to show my paintings, first, in a group art show at the CN Tower, and then at several other venues. He also very kindly found someone at U of T who designed a special easel which made painting a great deal easier for me, because it allowed me to be able to turn the picture around and thereby reach all of the areas of the canvas.

Over the years, I have absorbed teachings and knowledge from many different people and many different books. However, a lot of my learning came from within myself. Because of my wild, uneven movements, painting always presented a particular challenge for me. Throughout the years, figuring out the puzzle of how to do my art became like an obsession with me. I knew I couldn’t exactly paint like other artists, and yet, I also realized that if I persisted in developing my own technique I could produce truly original and unique bodies of work.

Up until this point, I had used a brush to do my art. However, by the time I was eighteen, because I began experiencing severe pain in my hand and arm from gripping the paintbrush so tightly, I decided to throw down my paintbrush one day and simply use my index finger to paint instead. From then on, because I was far more comfortable than I had ever been, my art started to gradually evolve. I learned that it had a certain power to it and that I could use it as a voice, to reveal the passions and frustrations I felt deep within me.

There are times when I paint just for the joy of it, there are times when I paint because I have to pay the bills, and then there are those times when I paint because I need to put a message out to the world.

As many of you may understand, Vincent Van Gogh and Frida Kahlo were particularly influential and inspirational to me. Both of these famous and brilliant artists provided a window into which it was possible to glimpse snippets of their personal lives. Look deeper still, you can see the workings of their minds, their feelings, their very psyches. If you look at Van Gogh's “The Bedroom at Arles” and “Self Portrait with Bandaged Ear”, his loneliness and mental health troubles become apparent at once. “Henry Ford Hospital” and “Self Portrait with Cropped Hair” are two of Frida Kahlo's masterpieces, and they're both full of raw emotion: loss, anger, and resignation.

I feel that it is very brave for artists to expose such intimate details of their lives within their art. This is something I greatly admire and strive to emulate with my own work.

Recently, I myself, have put my own personal experiences into my art. Eighteen months ago, my husband Rob passed away suddenly, and to deal with my grief, I painted what I felt. Some artist friends of mine told me that they were unable to produce any work after a traumatic event happened to them. I, on the other hand, felt an overwhelming need to paint my terrible pain and sorrow. Some people say, “Oh, this must be very therapeutic for you!” and, certainly, it is.

However, it also goes back to the very core of my philosophy regarding my life and my art: It is important for me to expose my feeling, experiences, and ideals to the public. Certainly, other artists must feel this way, but, for me, because of my disability, I feel this far more passionately. I need people to see the person I am, the type of life I lead, and the hardships I go through on a daily basis. People like me, our lives are not represented as equally as other members of society.

In most of my self portraits, I am completely naked. To some, this might seem shocking, but it is my intent to: 1) reveal the reality of my life: (It is the norm rather than the exception to have people see me naked on a daily basis). 2) demonstrate to women in our society (either able-bodied or with disabilities) that they should not feel shame or regret when they think about their bodies, but should instead rejoice in their differences. And, 3) to make people understand that just because people have disabilities doesn’t mean that we don’t have the same feelings of sexuality as anyone else.

Having faced terrible prejudice and injustice throughout my life, I have grown sensitive to the plight of other marginalized people. Through my art, I attempt to reveal the continuous battle that people face against societal boundaries just to be able to be themselves and to be able to live the way they want.

Thank you.

It would be my great pleasure now to demonstrate to you how I paint.

And that's what I did. I painted a picture in a white dress, and it, too, became like a canvas, a beautiful painting.

The next speech was for Trampoline Hall. The subject was on Victorian poet Elizabeth Barret Browning.

My name is Anne Abbott, and I'm here to talk about Victorian poet Elizabeth Barret Browning.

It truly amazed me, as I mentally prepared to write about this famous poet, that no one I mentioned her name to knew who she was. I was met with a lot of quizzical looks accompanied by: “Who?” You know,” I'd say, “the woman who wrote 'How do I love thee, Let me count the ways...'” “Oh her,” they'd say, “Yeah, Elizabeth Barret Brown!” “I-N-G,” I corrected. “ Elizabeth Barret Brown-ing.”

Admittedly, I was kind of a bit smug about my knowledge of who Elizabeth Barret Browning was. I mean, I wasn't an expert or anything, but I had some basic facts on her and her life. She was a famous poet with a physical disability and an overbearing, over-protective father. As a young woman, she met another poet of notable fame. His name was Robert Browning. Even though they both knew that Elizabeth's father strongly disapproved of their relationship, they couldn't help but fall madly in love. Because her father did object so completely and utterly to their devotion, Elizabeth and Robert eloped one day, and, basically, lived “happily ever after”. Elizabeth was so happy and in love during the first few years of marriage that she wrote a book about her love for her new husband, entitled “Sonnets of the Portuguese”, in which “How Do I Love Thee” appears.

These were the things that were told to me by my teachers and family. Seeing the play “The Barrets of Wimpole St.” confirmed what I'd already learned. The play was about Elizabeth and her eleven brothers and sisters and their over-protective father who didn't want any of them to get married, especially not Elizabeth.

This play affected me a great deal. Here I was, a teenager with a disability, and it was becoming more and more apparent that our society frowns on people with disabilities and able-bodied people having romantic/intimate relationships with each other. Even my own mother suggested that I narrow my scope because, in her opinion, able-bodied men wouldn't want to “take care” of a woman with a disability! This seemed extremely unfair to me! Except for a few physical limitations, there were many things I could offer a potential mate. There's nothing wrong with people with disabilities dating other people with disabilities, but that choice should be left up to us, not to the pressures of society. And so, whenever I felt depressed over the unfairness of it all, in my mind I would hold up the story of Elizabeth and Robert as a symbol of hope..

Really good friends of mine who were able-bodied would set my other disabled friends up on dates who didn't have as involved disabilities as me and that really hurt. I didn't say anything because I knew this was just the way people thought.

In my twenties, I began to feel frustrated. I was a virgin. And I didn't want to be a virgin forever. Nobody seemed to understand what I was feeling, which made it even more frustrating. I mean, sex isn't just two bodies going at it, its two people connecting on many levels, and I wanted to be part of that.

My sister-in-law took me to see male strippers and that was fun but none of them wanted to have sex with me. At 29, 1987, I got on the computer and started chatting with people. I had a lot of guys come onto me and that was good! I didn't tell anyone I had a disability for fear of being rejected. But this one guy named Rob was very persistent and kept wanting to meet me so I had to tell him I had Cerebral Palsy. To my delight and surprise, it didn't matter to him because he had gotten to know the person I was. We met and fell in love and eventually got married. We were together for 22 wonderful years. We tried to have a baby and a lot of people, including my parents, were against the idea. Unfortunately I had a miscarriage.

Well, anyway, back to Elizabeth and the romance between her and Robert. From the dim recesses of my mind, I remember hearing that someone had discovered that Elizabeth's condition had been Spina Bifida, a congenital malformation in the vertebral column. I've known many people with this condition and have seen how it can affect different people in different ways, and it sounded quite plausible that Elizabeth might have had it as well, perhaps as a milder form.

I then came across this quote, and others with a similar theme that brought new information to light for me: “Although frail, she apparently had no health problems until 1821, when Dr. Coker prescribed opium for a nervous disorder.” This “nervous disorder” wasn't yet recognized by the medical science of the time, so we don't know its name. But it's quite apparent that she was in a great deal of pain. That's why she was prescribed a lot of morphine. Many years after being with Robert, bearing a son, (after having several miscarriages) and writing volumes of published poetry, one of her peers accused her of losing her edge because of her addiction, to which Elizabeth replied scathingly, “Viva opium! And may you and I live by its means!”

At the end of her life, Elizabeth was diagnosed with having an abscess on one of her lungs and her doctor increased her dose of morphine. On June 29^th, 1861, Elizabeth died in Robert's arms, probably from paralysis of the breathing caused by the excessive morphine.

So, I guess I got a few things wrong about Elizabeth Barret Browning. Oh well... But I did learn some pretty interesting and cool things about her as well.

For one thing, she opposed slavery and published two poems that highlighted the barbarity of the slave trade and her support for the abolitionist cause. This is very significant because both sides of her family made their fortunes in the slave trade. Elizabeth also sought to improve other areas of social injustice: the oppression of the Italians by the Austrians, the labor of children in the mines and the mills of England, and the restrictions placed upon women

Elizabeth's book, simply named “Poems” made her one of the most popular writers in the at the time and, indeed, inspired Robert Browning to write to her, telling her how much he loved her poems. Interestingly enough, Elizabeth had produced a large amount of work and had been writing long before her future husband, Robert Browning, had set pen to paper.

I'm still not 100% sure what condition Elizabeth had, and really, does it matter? She was more than just a frail, ill woman who was rescued from her tyrannical father by this, famous poet who (literally!) swept her off her feet. She was a human being, like the rest of us, with strengths and weaknesses, highs and lows.

Honestly, I think I like and respect this Elizabeth Barret Browning more than the one dimensional character that people conjured up for me when I was a teenager. I can understand and empathize with Elizabeth. Our lives seem weirdly parallel. We both have conditions that limit our mobility and give us pain, our parents were over protective and couldn't see marriages in our futures, and even more weirdly, men named Robert fell madly in love with us. Sadly too, we both had miscarriages. Even though we both faced hardships, we both strive to make positive change in the world.

Doctors gave Elizabeth opiates when she was young and doctors gave me Valium when I was young. We both became addicted to our drugs but I was lucky enough to realize it and wean myself off. I always try hard to never ride that merry-go-round again but its hard when I get in so much pain. Pot, Percocet, Codeine: I do them all, but I try my best to juggle them and not get too dependent. Yes, I do this for my health, but just as in Elizabeth's time, there's this taboo of being addicted to drugs. You're viewed as bad and weak if you succumb to the evils of drugs.

I had a friend named Aaron who went into rehab for alcohol addiction and it was really warped how some of the other patients treated him. They implied that his situation was worse than theirs because he had a disability. Its wrong and humiliating to tell someone their life is worse than anybody else's. They also implied that it was good that he had assistants to help with his daily life because, they said, Aaron could simply tell his people to stop giving him drinks. This suggestion is shocking to me because this action would ultimately take away Aaron's freedom of choice! And, I can't see that anybody else within that group would be willing to have such restrictions put upon them!

It is my belief our society would be a whole lot better if people were less judgmental and open to idea that everybody has something to contribute to the world, even love.

Thank you.

Ottawa was where I gave my next speech Lenny, Aleisha, and I rode on Via Rail, First Class, and enjoyed all of the perks: free food and as much booze as you want. If this sounds like gluttony as its worst, then let me just say that I feel justified in taking full advantage of Via's generosity, because they have only one wheelchair seating area on the whole train, and the bathroom is not accessible.

The actual conference I was speaking at was on police brutality. It was, to say the very least, eye-opening and disturbing. On the first day, there was a panel of four people who all talked about how cops had killed members of their families, and had got away with it by covering it up.

Here's my speech:

On July 21, 2010, my friend and employee Lenny used a megaphone to read the speech I had written out of the office window of the Liberal Party Headquarters. Our peers down below, from both OCAP and DAMN 2025, cheered as we denounced the McGuinty government for cutting the Special Diet and the hypocrisy of the government's recent ridiculous spending spree. Nine other people were with us in that tiny office space, and one person hung a banner out the window. Nothing else was either touched or moved.

The action should have only taken 15 minutes, maybe 20 at the most, and then we were supposed to just leave. Unfortunately, as Lenny neared the end of my speech, a bunch of cops burst into the room and dragged Lenny into the hall. Soon, all 11 people, including myself, were unceremoniously corralled into the outer room.

Most people were cuffed and reprimanded by police, although they didn't inform people until much later with what they were being charged. They did try to tell us that people from the Liberal Headquarters had told us to leave, but I sure never heard them. In fact, they had been very helpful to get us inside.

I was told to go sit by a wall. Two people from my group were in front of me, and everyone else was behind me. As if I were invisible or inconsequential, the cops ignored me, and questioned and yelled at everyone else in the room. Eventually, one cop came over asked me if he could look in the bag on the back of my chair for identification, and I shook my head and pointed to my money pouch around my waist. Fortunately, he understood, but I was anxious to get Lenny back with me so that I could communicate more freely and precisely. My two friends in front of me helped me convey this to the cop. I could hear Lenny behind me telling some other cops that it was against Human Rights to keep my communication assistant away from me. I also told them that I needed Lenny with me for other kinds of assistance that day, because I had no one else scheduled to come to my apartment that evening. At that point, the cop actually said to me, "No problem, we'll call an ambulance for you and send you to the hospital." I almost exploded in fury and indignation! I rapidly spelled out on my communication board: "No no no no no! I'm fine! I'm not sick!" I wished I could have conveyed to him exactly how triggering the mere mention of a trip to the hospital was for me! Hospitals are not safe places for people with disabilities. Like prison, you're treated as if you have no rights and no brains with which to think.

Forty-five minutes had passed by this time. I could hear one cop yelling at Lenny and saying it was disgusting how I had been coerced into participating in the action. Lenny defended himself by saying that he had only been doing what I asked him to do, but the cop wouldn't listen. Finally, Lenny was by my side, and I spoke up and said that I had written that speech and asked Lenny to read it. I added proudly, "I am not a pawn!" Why was it so beyond belief for the cops that I might have self-determination and want to stand up for my rights, especially since I would, in all probability, be losing a huge chunk of my monthly income?

It was then that I was charged with trespassing, as was Lenny. We were the only two who didn't also get charged with mischief and have to do a night in jail. I guess because it was too much work for them to find us an accessible paddy wagon and cell. Oddly, sometimes our ableist society sometimes to work in our favour.

As I say, my speech was about the right to keep the much needed Special Diet money that was about to be cut from ODSP and OW recipients. During the G20, I marched with my peers in solidarity for this right and many more, so that we can live life with dignity and freedom.

The cops took no notice of the honour of our stance. No, instead they saw it as a chance to display their grotesque brute strength over the people they're supposed to “serve and protect”.

I realize that police violence is the norm, unfortunately; rather than the exception, especially when it comes to the poor, the marginalized, and the disabled. It's just that, during the G20, this fact became startlingly, unnervingly, obvious. With millions of dollars in government funding and support, cops felt like they could do anything with the power they'd been given. They've always had power over the public, and have, too often, abused that privilege, but, during this time this fact seemed to be magnified 100 times.

With my own eyes, I saw one cop pull a deaf man from the crowd for no apparent reason and detain him, keeping him from his ASL interpreter for hours. Everyone has heard the horrific stories of the G20, where police terrorized the public in their quest to find the “bad activists”, but also targeting the most vulnerable people. Tearing off a prosthetic leg from a prone man and then dragging him across concrete – disgusting! But the brutality continued even after the G20 had ended. In BC, a young woman with CP simply brushed by 2 cops as she walked down the street. They tackled her to the ground, thus breaking her wrist.

Cops are trained to harass and perpetrate violence against people who look or act different from the “norm”. Certainly, poor, marginalized people, and people with disabilities fit this description.

On a larger scale, our immigration system is an excellent example of this type of negative profiling. Poor and disabled people from other countries are seen as a drain on resources, with no kind of discernible worth at all. It is because of this shameful attitude that it is so easy for our government to refuse these people entry into the country, or send them back to horrific conditions, and sometimes even death. This practice must be stopped! No one is valueless, no one is illegal, and everyone deserves a shot at a better life!

To end, I will tell you that Lenny and I are still waiting for the trespassing case against us to finally go to court; it keeps getting pushed back. Now they say it will take place in the summer. I am sure this delaying tactic is designed to wear us down by postponing it over and over again, but it only makes me more resolute to fight and to show how rampant ableism is within the police and judicial system.

It's so utterly disgusting to me how cops view people with disabilities. We are either seen as being extremely guileless and helpless, or as being an easy target for harassment and persecution.. Unless we put a stop to this, the police will always target poor and disabled people. We must work together to stop police violence! We must work together to stop the further funneling of funds to the police force. There are a billion better ways to use that money!

Thank you.

My last speech was at the "Raise the Rates" demonstration on April 1st. We read some of our speeches outside of the Sheraton Hotel, where Dwight Duncan and his cronies were inside having a big expensive banquet to celebrate all the money they were saving by cutting poor people off the special diet. We then marched up University to Bay Street and stood in front of the Department of Social Services, where we read more speeches.
Here's my speech from that day:

The provincial budget, which was delivered by Dwight Duncan on March 29, 2011, did absolutely nothing for poor people in Ontario who rely upon the already ridiculously meager amounts from ODSP and OW.

Food prices are skyrocketing, and energy and transportation costs keep rising. The budget’s 1% increase to OW and ODSP is both insulting and demeaning! We need more to live, thrive, and feed our families on than a mere one percent! What a slap in the face!

But there is another injustice I want to talk about today, and that is the cutting of the Special Diet money. Back in December, 2010, just before Christmas, the government magnanimously announced that it would “save” the Special Diet. Yeah, right! What they meant was they'd cut the much needed program and have everybody on ODSP and OW re-apply. The cunning bastards knew what they were doing! They knew that this would cause major difficulties for people, which would, inevitably, slow down the system while weeding out some of the applicants – applicants who still need and deserve that money in order to survive! The list of qualifications was also shortened, another measure to ensure that only a very few could receive the Special Diet again. Not only do they want us to wade through miles of red tape, the government wants to take our right to privacy away by saying that ODSP and OW can look into our medical records if they want.
Dwight Duncan and our government as a whole, do not respect the poor people of this country. They treat us as if we are scum that they scrape off from the bottom of their shoes. But we are people, just like anyone else in this country, and, as such, we deserve to have the same rights. The right to have enough money so that we don't have to be forced to choose between paying rent and eating. The right to have enough money to buy nutritious food so that we can remain healthy and thrive. Most important, we deserve the right to receive enough respect from our government to be assured that the money, which is vital to our very existence, will never be suddenly cut.
Thank you.

Have I finally finished all of my speaking engagements? For now yes, but in May I'll be giving a talk to medical students. As Rob used to say, "For someone who's non-verbal, you sure do talk a lot!"

Frustration and the Never-ending Spiral of Segregaton

2011-02-17T22:39:00.000-08:00

See this picture? I came upon it the other day when I was sorting through and editing my digital photos. It was taken on New Year's Eve. I have no recollection of why I was angry and looking so ferocious!

This photo does seem to mirror the feelings I had last week: blood boiling fury and head banging against the wall, screaming into my pillow frustration!

It all started on Monday, February 7th, when I checked my mail and opened a letter from ODSP. I was shocked and horrified to learn that they had put my file on hold, effectively as of February 1st. (The letter was dated February 1st, so there was no warning at all that they were going to pull the rug from under me!) The reason for this drastic action was that I had not sent in my CPP information nor my business details.

Not letting the grass grow under my feet, I printed out all my business details for 2010 and also wrote this letter:

February 7, 2011

To whom it may concern,

My name is Anne Abbott and I am requesting an internal review. I received your letter on February 7^th, 2011 stating that my ODSP file is now on hold. I do not understand why this is so. In your letter you said I did not provide you with the CPP/QPP – Other and Business Income information, please clarify for me what the CPP/QPP is. My worker only told me to provide my income and expenses every year, and I have not been called in yet to give that information. It is no trouble to provide this information at all, as long as I am informed first. I was not informed! I need my ODSP money, I only make $100 a month from my business, if that. Please take my file off the hold.

Thank you,

Anne Abbott

I took this letter with me to the ODSP office the very next day. I asked to see my worker and they said no problem. Within 15 minutes I was in a cubicle facing my worker. There were 2 things I noticed right away. One, was that this woman was not my usual person; and two, she was talking about me in the third person to Lenny. I exploded!

I told the worker to talk directly to me: I was right in front of her and understood everything she was saying! (I just don't understand - they must deal with other non-verbal people all the time! Do they talk about all of them as if they weren't there? And I've been there so many times over the years, you'd think they would know me!) Still fired up, I told her that I thought it was terrible that they had given me no warning at all about cutting me off. Do you know how scared and intimidated I felt? To think that this agency has so much power over my life, and that they didn't think of the consequences of how this might impact my world!

To my amazement, my worker actually apologized and said she would take this matter up with her manager. Then she left the office and came back with some forms for me to fill out. One was the application for the CPP (I don't know why she wanted me to apply for a pension when I'm not even 65, it even says on the form that you have to be 65!)

When she handed me the other application, her tone became accusatory, saying I hadn't applied for the Death Benefit within a year. That was really the crux of the matter for ODSP. I defended myself by saying I don't know why I have to apply for the benefit when it will just be taken out of my next month's cheque. She said that was just how things worked. I groaned inwardly, but said to her yes, sure, I would fill out the application if that would get me my pension back.

What these bureaucrat bastards don't seem to understand is that filling out the form for the Death Benefit opens up old wounds. I mean, sure, I know that Rob is gone, but I've learned to put that away in a secret little compartment in the back of my mind. They made me revisit that most horrible time in my life, and then they put a cherry on the top of this whole mess by telling me that I can't even keep the money for myself. How degrading!

And then, last Thursday, I went to a demonstration at City Hall with DAMN, OCAP, No One is Illegal, and AIDS Action Now, among many other coalition parties. We did not "storm" into City Hall as some people in the media were claiming. No, we went in quietly and stood there, listening and absorbing all the information about the budget and cuts.

After awhile we heard the marching band approaching from outside the doors of the committee room. And then, somebody gave the signal to start yelling things like: "Stop the war on the poor! Make the rich pay!" Ford's slashing of 2000 beds at homeless shelters and much needed late night bus routes being canceled, were also hot topics to be vented.

Ire rose on both sides. Most of the councilors had been escorted by security guards back to their offices, but at one point Doug Ford yelled at a member of OCAP to "get a job" (a fact that he later denied, even though he was caught on tape saying it!) I actually know this person; she works for and gets paid by OCAP, so Doug Ford's comment seems doubly ridiculous!

There were speeches read with great passion by many people. I was one of those people. Here is my speech:

We are here today to voice our outrage and disgust at the cuts that are being proposed. Slashing the number of beds at at homeless shelters and cutting $100 000 from tenant representation isn't the type of city I want to live in.

Instead of these inhumane cuts, why can't Ford and the city of Toronto do some things that are progressive and uplifting. Instead of tearing down people's hopes and dreams for the future, why not try to help them build them up right from the start.

Begin with the educational system. Stop the segregation of disabled children from other children! Segregation breeds ableism, labeling the disabled child as “different”, and making the impression that they are not really a part of society, or at least not an important part.

This type of societal attitude will follow a disabled child throughout their lifetime. As years go by, instead of being hidden away in “special” school, a person will be hidden away from society in different ways. It will be an extreme rarity for them to appear in television, movies, or other media because their appearance is considered to be “undesirable”. And, what happens in their daily lives will be kept secret: the abuse, degradation, and poverty. A disabled adult will face other types of segregation: institutions, hospitals, and jail. Even with on-site attendant care projects, a disabled person using these services is locked into a world of abuse and frustration with little hope of escape the warped internal politics of each of these projects is infuriatingly similar.

And the feeling of being thought as a lower member of society will also continue throughout a person's lifetime as they fight to secure their basic rights only to be met with sneers or stony silence from government officials who promise to make the environment accessible and to make poverty go away, but don't follow through.

Instead of making cuts which will hurt more people than help them, why don't YOU Rob Ford, follow through and make the necessary changes that were promised to us: accessible and reliable transit, barrier free buildings, and an end to poverty! Do something humane for the City of Toronto for a change, Rob Ford!

Stop the school segregation of disabled children! End the ableism before it begins!

People may say that this strong stance against segregation of disabled children is too much. They need special care, don't they? They need to be treated a bit more gently because they're "special".

Let me tell you about my experience with segregated schools. When I was 5 years old this big blue bus picked me up, along with several disabled children, every day through the week days and brought us to the Ontario Crippled Children's Centre.

After everyone got off the bus, we were all taken to the physio therapy room where we were exercised for two hours or more. Sometimes physio therapist students would come in, and we were told to perform for them and show them what we had learned.

After physio therapy, speech therapy, and maybe an hour of schooling, we had lunch. Lunch on Fridays was particularly frightening for me because the person who usually (and very oddly, come to think of it!) served me was my speech therapist, and she, quite cruelly, force-fed me fish, something I had repeatedly told her that I despised.

I also despised my speech therapist. One day, when I was in her office, with no parent present for emotional support, she told me that unless I put everything aside (school, friends, even daily exercises), I'd never be able to talk. I was only 6 years old, and what she said crushed me! I had wanted to be able to talk so badly, and she wiped out any hope of me eventually being able to do that. Even back then, I was a well-rounded, socialized person, and that choice of giving else up that I loved was no choice for me at all. Instead, I developed my own mode of communication.

After lunch-time came nap-time. Half a dozen blue exercise mats were laid out on the floor, and we kids were placed upon them, three to a mat. If we chatted amongst ourselves or even (how dare we!) giggled, we were either yelled at or carried by one arm and one leg to another mat.

When I reached the age of 7, the Centre told my parents that I seemed listless and depressed, and they figured that the reason for this was that my young mind wasn't being challenged enough.

So, I was transferred to a school called Sunny View. And, admittedly, Sunny View was way better than the Ontario Crippled Children's Centre. Learning was top priority, doing exercises came second.

I do have one bad memory from being at Sunny View. I was 10 years old, and it was suddenly decided by the matrons that the kids were too heavy for them to transfer on and off the toilets and that the male janitors should be doing the lifting. Admittedly, it was an era before mechanical ceiling lifts, but surely the matrons could have worked together and done two-person lifts. The janitors were large and sweaty, and stank of stale beer. They assisted me only once with the washroom - and then never again! For six more years, I simply refused to use the washroom while at school.

(I should mention that around this time, when I was 9, I went to Blue Mountain Camp, a camp for children with disabilities. It was there that a male councilor peeled my wet bathing suit. He complained to his peers around him that this wasn't his job, and I thought to myself, how can you complain when I'm lying before you, totally naked and feeling utterly humiliated and vulnerable?)

When I was 16, a bunch of us got transferred to a regular high school. I liked the English and Art classes, and although I didn't feel I was a genius in History, my teacher insisted that I was his best pupil. I made friends, too, cool friends who respected the person I was and offered every day to help me eat my lunch. I couldn't help but think why couldn't school be like right from the beginning? Kids helping other kids and learning from each other!

I had to quit high school. There was just one bus that took all of the disabled kids from and to their homes, and because everyone lived in different parts of the city it took me up to three hours to get home. I was too exhausted to do my homework.

The Board of Education provided me with a home tutor. I really liked Carol - she was cool, and understood that I was a real person with brains and ambitions. My mom would provide tea and cookies during our lessons, and Carol would occasionally bring along her three little children. It was a wonderful atmosphere, and I got my grade 12 in English and my grade 11 in History.

Am I saying all disabled children and teens should be home tutored? Hell no! What I am saying is, right from the start disabled children should be integrated with other children so that there's understanding and empathy on both sides. I will say it again: segregation breeds prejudice, which spirals downwards to poverty, abuse, and "differentness". Surely it wouldn't be difficult to make all schools accessible! Didn't the OAA state that by 2025 everything would be accessible? Shouldn't that include schools, too? Not that I'm saying that we should wait until 2025. And didn't McGuinty say he wanted to stop poverty? When I was 18, I was put on Family Benefits, which morphed into ODSP. No one suggested that I should get a job, or even more education; it was just assumed that this was the end of the road for me, and financially and in some ways socially, yes, it was.

Fortunately, I empowered myself by creating my art, and writing about my life. It is my fervent hope that by these means society will wake up and see the injustices that disabled people experience on a daily basis.

TTC Rally Speech

2010-12-21T09:57:00.000-08:00

Yesterday (December 20, 2010) at noon, I read the following speech at a rally outside the Hudson Bay Company, at Bay and Yonge. Members of DAMN 2025, OCAP, and the Workers Assembly stood with me in the frigid cold as we handed out leaflets and flyers, and spoke passionately about our cause

Some people might say we have reason to celebrate because the elevator at the Yonge/Bloor subway station has been finally been fixed. I say NO! Not on your life should we accept this token response to our demands for full transit accessibility! For nine long months we have waited for this elevator – the one at the busiest subway station in Toronto! - to be repaired so that we could go to work, go to school, visit friends and family, and be a part of the fabric of our society.

Nine months – from April to December! - nobody could use this elevator. It took the busiest shopping time of the year for the TTC to actually do something about this situation. And I can tell you this: it wasn't because the TTC actually cares about making their services more accessible. If they actually cared about the needs of people with disabilities or had any respect for us at all, then 60% of subway stations and 40% of buses would not be inaccessible! No, what spurred the TTC into action finally was the knowledge that people with disabilities do holiday shopping too.

A couple of years ago I was trying to get my wheelchair off a subway train and my front wheel got stuck in the gap. Instead of showing concern or support the driver of the subway yelled out “Why don't you use Wheel Trans?" Excuse me, but I thought we were supposed to be members of society too. I'm sure he wouldn't have been so rude if it were anybody else. And, isn't Ontario supposed to be accessible by 2025? If this is the attitude of the TTC, it will be 3025 before any change happens.

Telling me to use Wheel Trans shows how little people know about this service. People have to book rides one day in advance. You can't just call up for same day service or book a ride way in advance. As well as this, if you manage to book a ride to your destination you are not always guaranteed a ride back. It's ridiculous and something that people have been complaining about for years. Not only that, but people have been stranded and have experienced rudeness and condescending remarks from drivers.

The fact that this elevator was broken for nine months is disgusting! It also demonstrates the lack of respect for us and lack of empathy for our daily lives. I say we don't stand for it anymore! I say we rally at every broken down elevator in the subway system until they understand we won't back down and we won't go away until every last one is fixed!

Before I read my speech, Lenny told me at the same station as the elevator that had just been recently repaired was another elevator with a sign on it saying that it would be out of service, starting January 10, 2011. No estimated time-line was given as to when this most necessary mobility aid would be back in service, but I have a sneaking suspicion that it won't be a top priority for the TTC.

January 10, 2011. Hmm, I wonder if this start to a brand new decade will actually change anything. New year, new decade - brand new respect and empathy for those of us who need reliable and well-maintained elevators in order to get around with ease,

Truthfully, I'm not holding my breath....

One Year Later

2010-10-02T18:53:00.000-07:00

September 19, 2010

(written over approximately 2 weeks)

*********

Thursday, Friday, Saturday. For the rest of my life those three days will hold such unbearable sadness for me.

*********

It's one year later since Rob's death. I have a lot of memories of those three days, and I feel like I need to write them down, exorcise them from my mind. I don't mean that I want to forget them entirely, because bad or good, I want to keep all of my memories of Rob with me always. I just mean that by writing about them here perhaps I can shed some of the pain they've brought me.

Thursday, September 17th, 2009

Lenny got me out of bed that morning. This was odd because Rob always lifted me out of bed in the mornings. Odder still was the fact that, without telling me, Rob had called Lenny beforehand and asked him to do this favour for him because he (Rob) was feeling weak and out of breath and had to go see his doctor.

When Rob returned from the doctor, he told Lenny and me that he had been so winded from climbing the stairs that the receptionist had asked him if he was all right. The doctor listened to his chest and said that his heart sounded a bit fast but ok other than that. He was more concerned about Rob's breathing, so he gave Rob a requisition for lung tests at St Michael's Hospital. Before Rob left, he fed the cats, had a smoke, and, much to my chagrin, put his Facebook status to: "Rob Warenda is going to the hospital today. He's not sure if he'll ever be coming back."

Rob left for the hospital, and I wanted to follow and stay with him. Worry began gnawing at my insides. I thought maybe Rob had pneumonia or the early onset of emphysema. I wanted to go with him, but I had a doctor's appointment of my own to go to. Finally, someone was going to look at my neck (it hurt so much!) and try to stop the constant pain I'd been in for the last 6 months. Besides, Rob was just going to the hospital for tests. He'd be home soon, right?

I ended up not going to the appointment. Instead, I took a piece of pot chocolate for the pain and went to the hospital with Lenny.

It seemed so surreal to be in the same hospital again where Rob had almost died from Pancreatitis nine years previously.

From mid-afternoon until nighttime, Lenny and I kept Rob company in the ER. He told us that the doctors wouldn't let him go home yet because they wanted to do more tests. They told him that his heart was "tacky", and then we saw that on his medical sheet that it had S.O.B. written on it. We laughed at that and concluded that they probably weren't calling Rob a son of a bitch but simply referring to his shortness of breath. And we joked that maybe they meant that his heart was tacky like a Valentine's Day card.

Rob told me that one doctor had told him that he had blood clots in his lungs and that was why he was experiencing shortness of breath.. The doctor also told Rob that if he went home that night he could die. Rob's response to this was: "I told him,, 'Cool! Not everybody knows what day they're going to die.'" If I could have reached him in that hospital bed, I would have given Rob such a smack! As it was, both Lenny and I chastised him soundly for that cavalier comment. "What?" Rob said with a grin in that smart-ass way of his. "I'm not going to die! They think it could be my heart, but I'm not in terrible pain; my left arm doesn't hurt; and, I'm not sweating profusely like I would be if I actually were having a heart attack." Rob also explained to us that he'd had similar episodes before this and he would always felt better afterward when he had a bowel movement. What heart attack, Rob reasoned, got cured by having a bowel movement?

I didn't know what to think. All I knew was that I was scared. Shitless. What was wrong with Rob? Was it serious?

Now the doctors were fighting about whether to put Rob in the Cardiovascular or the Pulmonary Ward, and poor Rob just wanted to get home.

Rob insisted on going outside for a smoke before committing to the idea of being fully admitted. Lenny and I tried to give him as many reasons as we could think of as to why he should stay. I knew that Rob hated hospitals, and that he didn't actually think that there was anything wrong with him, so I was panicking, thinking that he would just go home.

The three of us went back inside, and Lenny told Rob that if he stayed, they would go home with me and bring back anything he wanted. We sat there and made a list of stuff he wanted. The top three items all said: "I want to go home." Number four was, "I want my coffee." Number five was, "I want to go home." The rest of the list consisted of his I-pod, ginger ale, Halls, and a pack of smokes (that's my Rob!).

Lenny and I went home after that. I went to bed and Lenny gathered up all the stuff Rob had asked for. At 1 am, Lenny was stopped by a hospital security guard, asking where he was going with that enormous mug of coffee. Lenny shrugged and replied, "To the cardiac wing." The guard let him go.

Friday, September 18, 2009

Rob called me from the hospital in the early part of the afternoon. He gave me his room number, and I said, "No problem, I'll be there as soon as I can."

I will never forget this memory for as long as I live: Rob was standing in the hallway like he was waiting for Sarah and me. He said that he had heard the noise of my wheelchair. He seemed excited to see me, and I zoomed my chair right over to him.

As Rob complained about the hospital food, among other things, Sarah and I made packs of cards on Rob's bed. Rob complained about not being able to get Internet service in his room. He told us he had walked down to the visitors' lounge, where there is Wi-fi, but the heart monitor he was connected to went nuts, and his doctor said, "Okay, no more walking for you." Until then, he had pretty much convinced the doctors to let him go home for a while, to straighten up the computers and "take care" of me.

I was there when Rob's doctor came back and explained to Rob that at first they thought it was the blood clots in his lungs that were the main problem, but the blood thinners that they had given Rob seemed to be getting rid of them. Now they thought it had to do with his heart, and they would keep him in over a week to do tests. I heard Rob explain once again how it couldn't be anything serious with his heart because whenever he had felt this way before, it always felt better after he had a bowel movement.

I was so scared for my poor Rob that I went hone and cried all during dinner. Grace gave me a talking to! She told me that Rob was young and strong, and he needed me to be strong and not to cry. Rob would be all right, she assured me.

I felt better. Grace was right. Rob was young, strong, and healthy. He had recovered from Acute Pancreatitis, hadn't he? He'd be fine, I was sure of it. Besides, the doctor said he wanted to have Rob stay in for a week for tests, so it didn't sound like Rob was in any immediate danger.

Lamia went with me back to the hospital. I can't remember what we talked about, just that we laughed a lot.

I did feel some unease, though, when Rob said he wasn't very hungry, Ginger Ale didn't appeal to him, and his craving for cigarettes was nil. That wasn't like my Rob at all!

Anger began to stir within me. The doctors prescribed Rob water pills and told him to remain in bed and to wear an oxygen mask, but the water pills made Rob have to get up every few minutes to go to the washroom. Why didn't they give him a catheter or even a bottle? And, why the devil didn't I insist on something like this before I left? I still feel angry over these things!

And, speaking of anger, I got rather peeved at Rob for saying that if he did die at least I wouldn't have to deal with him buying so much computer stuff. I literally growled at him and said that if he did die I'd kill him. (I wanted to keep it light and jokey so not to stress Rob out.) Rob laughed and said, "Don't worry, Sweety, I'm not going to die."

There was a time when Lamia left us by ourselves, to call her partner Mishann, I think. While we were alone, on his way back into bed from the bathroom, Rob hugged and kissed me, told me he loved me, and fondled my right breast fleetingly.

At around 9:00 pm, Lamia and I decided to go. I was torn:
I didn't want to leave Rob, but I had to pee badly and hospitals, to my knowledge, don't have commode chairs. Also, I had to go to bed early so I could get up at 5:00 am and go to the market.

And so, Rob and I said our goodbyes. We told each other we loved each other, blew kisses at each other (Rob felt too weak to get out of bed again), and I told him I'd come to see him right after the market. He grinned and said, "Ok, see you later, Sweety."

And then Lamia and I left.

Saturday, September 19, 2009

I heard the phone ring once at 3:30 am, and then again at 3:45. Except for the cats, I was completely alone. I thought maybe it was a wrong number, or that Motria was calling to tell me that she'd be late getting me up. And yes, it crossed my mind that it was the hospital calling. Maybe Rob was in trouble, and they were calling to get permission to do a procedure or something. If I was honest with myself, there was a tiny spark of fear that kindled way back in the deepest, darkest part of my mind that suspected the worst thing imaginable.

Motria came at 5:00 am, and right away I told her about the phone calls. To my horror, when we checked the messages, it was the worst thing imaginable! Rob had had a massive heart attack, and, although they'd tried their best to save him, they couldn't.

While I cried inconsolably, Motria called my mother and all of my friends and told them the dreadful news.

As you can imagine, that day is a jumbled-up mess of memories. What I remember is this:

The surreal feeling of leading my mother and all of my friends to St Michael's Hospital, stopping occasionally to cry and get hugged and reassured.
Being alone with Rob's body, saying farewell. I touched his hair, cheek, arm, hand - even one of his nipples - knowing that I'd never feel the touch of him again.
Talking with the doctor, hearing him apologize and say that an MRI should have been done sooner, but no one knew how serious it had really been.
Home again, with cats, Mom, friends all around me. Rob's favourite music played, pizza was ordered, different types of alcohol flowed, humourous tales were recollected. Delicious dish after homemade dish were given to me, and I accepted graciously, even though the very last thing I wanted to do was eat.

That's it. Well, I could keep going on, and on, and on ... but I would rather share some of my fondest and funniest memories of Rob Warenda.

The first time that I laid eyes on the hunk of man that was to become my sweetie of 22 years was at the Scarborough Town Centre in January of 1988. We had previously chatted over several bulletin boards online and had found out that we really cared for each other and, well, lusted after each other. My mom and friend Louise thought they'd better accompany me on this first date at M'goo's ice cream parlour. They mistrusted Rob, and Mom even said, "What if he's an axe murderer?" I laughed and said, "Mom, I'm sure he hasn't murdered any axes."

A fraction of a second after they left us alone together, we were in each other's arms. We found a quiet place to talk and kiss and make googly eyes at each other. We knew from that moment on, we were meant to be together.

My Dad, on the other hand, was skeptical about our relationship: the first time Rob took me out in his car, Dad ran out the door and wrote down Rob's license plate number.

I remember one time one of Rob's cousins invited us over to her place. It was an odd and unforgettable afternoon. The place was kind of messy and the doorways were very narrow, so Rob picked me up and put me on the couch. The oddest part was that his cousin never actually showed up, so we entertained ourselves by sitting on the couch and necking for maybe one or two hours. There was a lamp above the couch that hung very low, and I remember hitting my head on it several times, but I barely noticed because I was young and in love and horny.

Rob and I had a lot of fun on our first dates. We went to parties, and to Canada's Wonderland. I remember going to one party in the evening. They served hot dogs, burgers, and lots of beer. By the time it got dark, I was wasted, and I was in my manual chair with no seat belt. I didn't believe in wearing seat belts back then. The combination of being drunk and sitting on a vinyl seat had comical outcomes: suddenly I slipped out of the seat and onto the foot rest. It was so dark Rob couldn't see me, but he followed my laughter and picked me up.

I loved going to Canada's Wonderland and going on the rides. One time Rob asked me if I wanted to go on the bridge and get sprayed on by the log ride. By "sprayed on," I thought we would get a bit of mist on us, so I agreed. Much to my shock and amazement, this tidal wave of water came straight at us. I opened my mouth to gasp and swallowed a ton of water. Once again I wasn't wearing a seat belt so I almost floated away, but Rob grabbed me and held me in place.

I love you, Rob! Good and bad, I'll always cherish my memories of our life together.

Speaking Out Once More for Our Rights

2010-08-30T11:04:00.000-07:00

The following is a speech I gave today, August 30th, outside the Provincial Courthouse about the arrests on July 21st of myself and ten other activists at the Ontario Liberal Headquarters. The event was called as a press conference, although only one media representative showed up towards the end. I guess violations of our rights to freedom of expression are so commonplace now that they don't count as news. (Even at the last press conference I got the feeling that the media weren't really interested in the issue of the Special Diet, or our rights being trampled on, but more about the sensationalism of on OCAP "leader," and a disabled woman, myself, being arrested.)

During the G20, we only wanted to voice our outrage at the ableist government for taking away the Special Diet and not listening to us. Our protests were met with violence and blockades.

Then when we once again demonstrated against the unfairness of the government taking away our money, we are met with overreaction and arrests.

The charges should be dropped against our people!

Freedom of expression should not be penalized; the government is supposed to be working for us, and we need to be able to bring them our concerns and hold them accountable in their offices. We only seek justice and freedom and respect from our government. We won't accept that they turn us away with police and ridiculous accusations.

The speech I am reading today was prepared by myself, and read by my communication assistant. I need a communication assistant always to express myself fully. This is my right. But my rights were taken away from me when I was charged on July 21st. The police separated me fro my communication assistant, so I couldn't speak freely. This is terrible ableism! They also threatened to send me to the hospital. Again, that's terrible ableism, because they don't see people with disabilities as fully functioning people, but as people so weak as to need the care of hospitals.

Not only should the charges against me be taken away because my rights were abused, but the charges against our people should be dropped.

Thank you.

Liars, Hypocrites, and Jail Time Continued

2010-08-22T20:13:00.000-07:00

That last entry was cut short by, well, technical computer/Internet difficulties and, of course, the complexities of life. What happened to keep me away from continuing from where I left off matters little. What does matter, though, is the story itself.

My previous entry was a speech I had written. On July 21, 2010, my friend and employee Lenny used a mega phone to read the aforementioned speech out of the office window of the Liberal (Provincial) Party Headquarters. Our peers down below, from both OCAP and DAMN 2025, cheered as we denounced the McGuinty government for cutting the Special Diet and the hypocrisy of the government's recent ridiculous spending spree. Nine other people were with us in that tiny office space, and one person hung a banner out the window. Nothing else was either touched or moved.

The action should have only taken 15 minutes, maybe 20 at the most, and then we were supposed to just leave. Unfortunately, as Lenny neared the end of my speech, a bunch of cops burst into the room and dragged Lenny into the hall. Soon, all 11 people, including myself, were corralled us into the outer room.

Most people were cuffed and reprimanded by police, although they didn't tell people until much later what they were being charged with. They did try to tell us that people from the Liberal Headquarters had told us to leave, but I sure never heard them. In fact, they were very helpful to get us inside.

I was told to go sit by a wall. Two people from my group were in front of me, and everyone else was behind me. Mostly the cops ignored me, and questioned and yelled at everyone else. One cop asked me if he could look in the bag on the back of my chair for identification, and I indicated my money pouch around my waist. Fortunately, he understood, but I was anxious to get Lenny back with me so that I could communicate more freely. My two friends in front of me helped me convey this to the cop (I could hear Lenny behind me telling them that it was against Human Rights to keep my communication assistant away from me.) I also told them that I needed Lenny with me for other kinds of assistance that day, because I had no one else scheduled. At that point, the cop actually said, "No problem, we'll call and ambulance for you and send you to the hospital." I almost exploded in fury! "No no no no no! I'm fine! I'm not sick!"

During all of this, I could hear one female officer (I'm pretty sure she was from that YouTube video, "Bubbles the Cop,") yelling at Lenny and saying it was disgusting how I had been coerced into participating in the action. Lenny defended himself by saying that he had only been doing what I asked him to do, but the cops wouldn't listen. By this time, Lenny was finally by my side, and I, filled with rage and indignation, spoke up and said that I had written that speech and asked Lenny to read it. I added, "I am not a pawn!" Why was it so beyond belief for the cops that I might have a brain in my head and want to stand up for my rights, especially since I would, in all probability, be losing a huge chunk of my monthly income?

Then I was charged with trespassing, as was Lenny. We were the only two who didn't also get charged with mischief and have to do a night in jail (I guess because it was too much work for them to find us an accessible paddy wagon and cell.)

Sometimes our ableist society kind of works in our favour.

Liars, Hypocrites, and Jail Time

2010-07-21T20:26:00.000-07:00

Back in March of this year, the Federal budget came out, and much to people's shock and dismay, it was made known that the Special Diet money would be cut from ODSP & OW. Ironically this came upon the heels of a human rights case where the verdict for the plaintiff (people who had lost their special diet) stated that all people on ODSP and OW need their rates raised significantly. Did the government take heed?! No! Instead they completely ignored this monumental statement. Not only that, but they told us they were making these cuts so they could reduce the deficit.

If we didn't know already what liars they were, we sure found out during the G20. They spent 1 billion on the summit without a single thought as to how hypocritical this action seemed to be! It was a slap on the face to the poor people of Ontario. In that one act of hideous extravagance, our government was, in fact, saying: “We don't care about the poor people of this country. We don't care if they live below the poverty line and have to choose between food and rent. What's important to us is to spend this enormous amount of money on 1) security and turning Toronto into a police state, and 2) hosting this non-sanctioned summit that excludes all but the richest world leaders.”

They think we are afraid of their power and brute strength. We are not! We don't forget and we don't forgive! With the utmost determination, we will not rest until the Special Diet is returned to us so that we can buy good food, stay healthy, and pay our rent! Nor will we stop fighting to get a 40% increase so that we can finally live above the poverty line!

Recently, our government spent 9 billion dollars on fighter jets and one hundred million dollars on war ships. This is truly disgusting! We need to make them see that money should be spent on providing a better environment in which people can live and thrive. The government shouldn't be trying ti think up new ways to destroying life; they should, instead, focus upon bettering the quality of life!

They promised to reduce poverty, but instead they are increasing it. They promised to close down all abusive institutions, but many still remain open. By 2025, they promised that Ontario would become what they consider to be fully accessible. Too little too late, I say!

Over and over, we must remind our government of its many promises, and we must hold them to their word. Only until then can we take back our power and dignity. Only then can the paths to our own lives be self-determined.

Thank you.

Solidarity with all prisoners!

G20 Surrealism Continued...

2010-06-30T10:39:00.000-07:00

This is a continuation from my last blog. I feel like I need to tell my story from my own unique perspective. I feel like if I don't do this soon, I just might explode from my boiling fury at what injustices transpired during the G20 Summit.

Friday, June 25th, 2010: Members of D.A.M.N. (Disability Action Movement Now!), O.C.A.P. (Ontario Coalition Against Poverty), No One is Illegal and Grandmothers for Afghanistan were there, among dozens of other groups of activists. There was a very large contingent of D.A.M.N. that day (as well as other upcoming days) - it was so exciting and empowering to see so many people with disabilities come out to this monumental event!

We were all excited and ready to march and to cry out our frustrations with the government ignoring our pleas for financial stability, and our determination that we would be heard and that things would change for the better!

To have our voices heard, we used chants: Too many barriers, Not enough food, Sit down, roll on, fight, fight, fight! - Stair by stair, Wall by wall, We demand Access for all! - Hey hey, TTC, Public transit should be free, Ho ho, TTC, Make transit barrier free! As the scorching sun beamed down upon all 4,000 of us, baking us, we chanted and a Samba band played periodically, lifting our spirits and giving us strength to continue. It was a slow trek that lasted 5 long hours.

Let me say this: neither D.A.M.N., nor O.C.A.P., nor all of the many activist organizations who were there that day had any kind of thought of committing violence. We simply wanted to have our say, get our message to the public, and try to get as close to the G20 fence as possible. (The latter was a political statement: it was such a horrendous slap in the face, especially to poor people, that two billion dollars had been spent on the G20 instead of on social programs and reducing poverty.) King St, we'd heard, was the farthest point we could go, and that was fine with us.

We started our march from Allen Gardens at 2:30pm, and thousands of police shadowed our every step. Their looming presence was daunting, to say the least, but it didn't deter us from our mission.

Overall, it was a peaceful demonstration - on the side of the protesters, at least! At the corner of Carlton and Bay, cops suddenly grabbed some guy from the march and told him to get off the street. (I still don't know why this happened!) Apparently, the guy was young, of colour, and was Deaf. The cops didn't believe that he couldn't hear, though, and, thus, didn't allow his ASL interpreter to go with him. I was way, way ahead from this particular scene, but my peers explained to me that five friends of this young guy, who were also people of colour, tried to reason with the cops and got beaten for their efforts.

In some way, it was decided that we should keep on moving. So, we did. We marched and we marched, and several times the cops blocked our way, although we were nowhere near King St. or the G2O fence. No word was spoken by cops; we were only met by empty stares. At one point, when we were hemmed into a cul-de-sac off University Ave., there was a rumour that there was a sound canon around, so we all very hurriedly put plugs in our ears. I, myself, held my breath and waited for the attack on our ears. None came.

We started backtracking, until we, once again, reached Allen Gardens. There, we stopped and rested. Pup tents were set up, food was brought out, and entertainment was performed. There were several hip-hop singers singing about the world's injustice. I really liked their singing and dancing, but I was even happier when Simone and Ian came on. I love their music! Speeches about the extravagance of the G20 compared with the serious poverty in Toronto were read with passionate hearts. Lamia read my speech, and people seemed to enjoy it; one woman even asked if she could use it in her documentary about poverty.

Saturday, June 26th, 2010: I was exhausted on Saturday morning! It was the first morning in ages that I hadn't been to the market to sell my art. I half wanted to go to the protest I'd heard about at Queens Park, but my body said rest, rest, rest! I listened to my body and took it easy. I had a late brunch, took a hot shower, got dressed, and went out to buy a few things at the Drug Mart.

I'm not big on the whole soccer mania thing, but I let Motria talk me into watching the game between Ghana and the US at Mickey Finns. We both rooted for Ghana to win. While the game was on, Motria kept checking for updates on what was happening with the protest that day. Much to our surprise, we found out that a few of the protesters had started smashing windows of banks and iconic corporate buildings (Starbucks, American Apparel, Bell, Rogers, Tim Hortons etc - no "mom & pop" shops were touched, as later claimed by the police.) First, one cop car was reportedly torched, then another, and another. We could see cop cars go whizzing by Mickey Finns, and the TV now had vague news of the downtown riot scrolling underneath the game.

A million emotions ran through us at that time: curiosity, fear, excitement, and concern for our friends. Of the two of us though, I'm sure I was the only one who felt a certain amount of awe for the powerful symbolism that the protesters made by the smashing of windows of greedy corporations and banks. I mean, nobody got hurt, and I'm sure the corporations have enough insurance to replace a window or two.

The rest of the weekend was brutal and terrifying for the people who participated in saturday's protest - and even for those who hadn't. 900 people were arrested over the weekend, even during some of the most peaceful protests, where people sat, sang, and prayed. It has been an overreaction on a grand scale. People were corralled and beaten and threatened over and over again. Like dolphins caught in a tuna net, bystanders were ensnared. And now stories are coming up about how horrible conditions were at the detention centre. Some people were in there from 23 hours to 36 hours with no food, no water, no toilet paper. Most people had no idea why they had been arrested. Young teens were not allowed to call their parents, and women inmates were strip-searched by male cops. Disgusting treatment!

In my opinion, these strong and over the top measures were not at all warranted. People broke windows. That's a misdemeanor, at best a fine or community work. Four cop cars got torched. Again, that's a misdemeanor, at best a fine or community work. Our city streets should not have been turned into a war zone where cops could do anything they wanted!

And, where were the cops that fateful Saturday when all this shit happened? I'd seen literally thousands of them for days. You're telling me that so many cops couldn't have stopped people in their tracks and prevented all of the damage that was done. Why didn't they? Eye-witness reports have circulated that cops weren't even near their burning squad cars, nor did they show any overt concern about them at all. It has been said the squad cars, old and without any radio equipment, were planted as bait for the protesters. The cops actually wanted protesters to cause damage so they could justify spending so much money on security.

This is "Toronto the Good". This is Canada the "Peace-Keeper". What happened?! It's Canada Day, and I certainly don't know anybody who feels like celebrating this travesty of a country!

G20 Surrealism

2010-06-27T19:49:00.000-07:00

It's been a very long time since I did a blog entry. My heart was broken two times over. First, my dear husband Rob died in September of '09, which was particularly devastating for me. And then, my best friend Aaron Shelbourne died a few months later of bladder cancer.

Nothing really seemed to matter or had any great importance to write about.

Until this weekend.

On Friday, June 25th, 2010, I went to protest against the G20 Summit in my beloved city of Toronto. Twelve, maybe fifteen different groups all met in Allen Gardens, ready to march down the streets and, hopefully, get within 5 meters of the security fence at King St. (That was as far as you could go before getting arrested. That's what we were told anyway!) to voice all of our objections (of which we had many!) to the way the government was doing things. One of our main issues was that our government had given billions of dollars in bail out money to banks and big corporations and yet had cut the Special Diet from people on ODSP (like me!) and OW - people who really need that money to survive.

I'm a member of D.A.M.N. (Disability Action Movement Now!), and this is the speech I presented on behalf of myself and the group at the end of the demo:

People, we are here today to demonstrate our strength and unity to the government officials who have tried to beat us down, tried to humiliate us, and, finally, tried to scare us with those bloody sound canons!

They want to strike fear into our hearts because they're actually the ones afraid of us, afraid that we won't stop fighting until our demands are met! And, by god, we won't!

We demand that the Special Diet be returned to the people who really need it, people on ODSP and OW, who need to buy healthy food in order to survive and thrive. People on ODSP and OW should have their monthly rates raised by 40% NOW! We need to be able to pay our rent AND buy food within the same month.

People with disabilities are forcibly imprisoned in places, like psychiatric institutions, nursing homes, prisons and detention centres. Refugee claims are commonly denied if someone is identified by the state as disabled, whether or not that person agrees with such a label. People with disabilities are kept out of much sectors of employment and also pushed into labouring in for profit sheltered workshops for miniscule pay. Prisons are full of people with disabilities. This discrimination and so much more adds up to a ensuring that so many amazing people in our city and in our world are kept in poverty, kept incredibly isolated, kept in danger and kept as tools for the profits of exploitative governments and companies. We are people and we've had enough. We demand an end to the systemic abuse and discrimination towards people with disabilities. We have a right to employment, to use public transit, to immigration status, to education, to safe and healthy food and shelter, and to freedom of movement and self determination in our own communities!

We demand that the cap on Direct Funding be lifted NOW! Every day there are many types of abuse that are inflicted upon people with disabilities who live within attendant care projects or institutions. People with disabilities should have the right to be able to say who can assist them with their daily routines and who MUST NOT! Seven hundred people have Direct Funding in Ontario; there are thousands of others who also need this funding in order to lead truly independent lives and feel safe in their own homes

I, myself, have lived within 2 separate attendant care projects before I finally received Direct Funding. I thought the first project was unbearable. The abuse was recorded by management, and then swept under the rug. I decided to move to another project, anything had to be better than what I had just experienced. I was wrong! It was different people, sure, but same types of abuse by the attendants and same do nothing attitude of the management. I felt frustrated and disrespected. I cried buckets of tears, not knowing where to turn, what to do. And then, my tears dried and my anger boiled. I went to the Toronto Star and told them about my abuse and neglect. Soon after the article came out, I applied for Direct Funding, and, amazingly, I got it within 6 months. My life did an 180 after that. I was happy, confident, and in control of my own life. The people I hired to assist me liked and respected me, and I felt the same way about them.

I now feel the same frustration and sense of disrespect as I did when I was dealing with the people at the attendant care projects. The government doesn't respect us! We keep telling them what we need and they turn their backs on us. If they respected us, they wouldn't put off making Ontario accessible by 2025! If they really respected us, they wouldn't have cut the much needed Special Diet only to spend one billion dollars frivolously on the G20! We don't need a fake lake or sound canons – we need enough money to live on! We need accessible transit and affordable housing! We need to be able to have the choice of getting Direct Funding if we need it! And, most of all, we need the respect from the people who govern our country! We need all these things NOW!

Thank you.

Solidarity with everyone who was pushed around, intimidated, beaten or detained by cops this weekend for trying to stand up for themselves, and to those who were simply caught up in the melee.

Is it any wonder I had a Mad Max-like dream last night?

Life Goes On

2009-12-14T20:29:00.000-08:00

When my beloved cat Dandylion died almost four years ago, I painted a picture called "Life Goes On". In the painting, I'm sitting on my bed with Dandylion (who's facing away, looking at the outside world through the window) and my two new kittens, Hershey and Rascal, who are both curled up next to me. It represented the fact that, sad though it may be, life goes on, even if you're heart is broken and your life is in shatters. I'll always love Dandylion for as long as I live - nothing will ever change that! - and yet, the huge void he left in my life led me get Hershey and Rascal two weeks later.

It's different when your husband of 21 years suddenly dies. I can't just run out to the Humane Society and get a new mate, nor would I want to. Rob is irreplaceable, one of a kind!

And, as with the case of Dandylion, I realize that, even through the pain of grieving, life continues to go on, and I have to keep going along with it. It's what Rob would have wanted, after all.

So, my daily rituals continue as well: nourishment, bathing, shopping, banking, seeing to it that my household is run smoothly, that my employees are paid, that the cats are happy and healthy, and that bills are dealt with in a timely fashion. I can't totally fall apart, as much as I'd like to, because people depend on me.

To get back into the ebb and flow of the universe, I decided to do some things which were both fun and constructive. For Halloween, I dressed up as Anne Bonny (a real life female pirate.) It felt wonderful to be someone else for awhile! Without too much trouble (amazingly enough!) I had several fittings for my new (and fantastic!) seat and wheelchair, both of which will be here in mid-January. And, I've been painting, of course. Painting is like breathing to me: I couldn't survive without it.

There were serious things I had to deal with too, such as, paying bills, canceling cards, and going to ODSP.

About a month ago, I had to go into the ODSP office for a financial review. (I hate those meetings! They make me feel insignificant and lower than scum on a snake's belly). It's intimidating as hell because they comb through your finances, looking for some little mistake saying that you have a penny or over the poverty-line.

But I'm getting ahead of myself. My worker suggested to me that I should write to the City of Toronto and ask for a copy of Rob's death certificate so that I could apply for a death benefit. In fact, my worker seemed genuinely concerned for my welfare.

Yeah, right! I went back last Friday to show them my art profits for the month of November (of which they're taking 50%!) and my worker again brought up the subject of me getting the death benefit. It might be as much as $300.00. (That brightened my day! Now that ODSP was giving me less monthly income since Rob's death, I knew I could put that money to good use!) And then she dropped the bombshell: the Provincial government would pay me the death benefit and the next month the Federal government would deduct the exact same amount from my ODSP cheque. So, basically, I would get nothing - nothing for being a good and loving partner and wife for 21 years, nothing for my pain and grief for these past 3 months. When I asked her why should I even bother applying for the death benefit - she said that I HAD to!

As you know, I'm a strong woman, but I found myself weeping in the ODSP office. I felt cheated and humiliated. I'm sure that other people who get death benefits actually get to keep theirs. But, because I, and others like me, are on ODSP, we don't have the same rights, even though our needs are greater than most. Despite the government's promise to end poverty, they seem to be hell bent on keeping people on ODSP poverty-stricken for the rest of their lives!

And so, yes, life does go on. Apparently, so does the fight for positive, progressive change.

Good Grief

2009-10-20T08:00:00.000-07:00

Within these past 14 years I've lost three close friends, both my grandmothers, my father, and have had a miscarriage.

And now, the sudden loss of my darling Rob. Perhaps the suddenness of it all and the absolute depth of my feelings for him, has made this almost impossible for me to handle.

And yet, somehow, I am managing to get through each day a little bit stronger. Sure, there are tears I shed daily; sorrow that is so intense that it is like a knife twisting in my heart; and memories - good and bad - that torture my mind and spirit; and yet, I'm slowly accepting this tragedy as reality.

The bad memories linger still. Seeing Rob laying in the hospital bed, eyes closed, mouth slightly open, his wrists tied together about his waist with linen strips (odd that!) I touched the coolness of his skin, wept uncontrollably, and, not for the last time, said goodbye to my mate of 21 years.

I tried to hold it together, to "be brave", when I had to, first, talk with the heart specialist who took care of Rob, and then, days later, when I had to make the arrangements for the memorial. Those were the hardest days of my life! I cried buckets those first few days.

Not to mention the weird stuff that had been happening around me which was torturing my very psyche. Like the loving and sentimental wife I am, I found the YouTube video of Frank Zappa (Rob had always idolized him) singing our song Love of My Life and put it on Rob's profile page on Facebook. This particular video, I noticed, had been recorded in Barcelona in 1988, the year when Rob and I first met and fell in love. This information seemed interesting to me because I know that Love of My Life was recorded much earlier, in October of 1968.

And then, there was the morning of the memorial service, when, as I tried to force a few bites of breakfast down my throat to try to keep my strength up, I opened my laptop and immediately a pop-up for SMC (Specialized Merchandise Corporation) appeared. I never get pop-ups on my computer, and to get one at that particular one from SMC, a company from where Rob tried for years, unsuccessfully, to sell their products and run his own business - well, that was too much! I wailed and screamed out my frustrations at the unfairness of it all. SMC had been a small thorn in the side of our marriage, and it seemed so terribly unfair of life to remind me of this fact!

Even more unnerving was the fact that when everybody had come back to my apartment after the memorial and the light outside my door was burnt out. Motria, who had come back before us to order pizza, told us that the light had burned itself out just before our arrival. She said that the exact same thing happened when her father died. Odd that! Do spirits of the dead reside in lights until it's time to depart?

The memorial service was the hardest on me. I had to sit there and attempt to be gracious and stoic, even though all I really wanted to do was sit in a corner and cry. Friends and family kept coming over in a stream of never-ending faces. They all hugged me and kissed me and asked "how are you doing?" (I learned to loathe that question. How the FUCK do you think I'm doing?!) Still, except for a bucket load of tears, I did ok. I was the gracious widow.

And yet, part of me was happy. So many people came to the memorial, to celebrate Rob's life and share their memories of what a great guy he was. Even his internet friends, who lived far away, sent messages to be read aloud explaining how he enriched their lives by being funny, caring, and non-judgmental.

Many of my friends kindly helped with the memorial arrangements. We had pictures of Rob put up everywhere and his favourite ball-caps that he had collected throughout the years, as well as his most worn t-shirts and his collection of rock LPs too.

Of course there had to be some sort of electronical gadgets there too or else it just wouldn't have been a memorial that was truly for Rob. Rob's Ipod played his favourite music while his Mac played a DVD on a loop. The DVD had pictures of Rob as a child with his family and friends; Rob as an awkward yet lovable teen; and, Rob as an adult, marrying me. (We both looked so happy and in love!) There were clips of him on the Open Mike with Mike Bullard Show when he was the "Viewer of the Week" and one where Rob was an extra on Night Heat. One of the more personal video clips showed Rob at home with Rascal, who was just a kitten back then, sitting on Rob's shoulder suckling on his earlobe - and Rob happily letting him!

All of this makes me very happy. So many people loved Rob; they knew, just like I did, that beneath thar scruffy, gruff exterior lay a real creampuff who would do anything for anybody. I'm happy because I think Rob would have liked the memorial. Oh, sure, I can hear him now: "Why did you go to all that trouble? It's just me, and I'm nobody!" Secretly, though, I know he would have been pleased and touched by all of the love and attention shown to him.

It has been one month and several days since Rob's death, and this past Sunday I did one last thing to honour Rob's memory: I took his ashes with me when Laura and I went to see 500 Days of Summer. Rob felt about Zooey Deschanel the way I feel about Johnny Depp, and he had wanted to see this movie so badly. Within his green velvet sack, Rob sat upon Laura's lap, he sported his Kim Mitchell cap and his eye glasses and watched the movie. I think he liked it. He didn't say much; but then Rob was always a man of few words.

A Hell of a Lot to Say

2009-10-02T16:06:00.000-07:00

This time, although it may kill me to write about what has transpired in the last few weeks, must be set down.

My husband Rob, the love of my life for 21 years, died suddenly of heart failure on Sept. 19th at St. Michael's Hospital in Toronto.

Such a shock I've never had! The previous day Rob was sitting up in bed, laughing and kidding with everybody. He sat there, drinking coffee from his Tim Hortons mega mug and complaining about the hospital food. When I told Rob I had to go home, he said, "Ok, see you tomorrow. I love you!" I said the same thing to him, and then we kissed goodbye.

That was it.

At 3:30 and 3:45 am the phone rang. I was alone in bed and unable to answer it. It went through my mind that phone calls in the wee hours of the morning never bring good news. Still, I hoped it was something mundane like a wrong number.

When Motria came to get me up at 7:00 am, we checked the message and heard the terrible news of Rob's death.

I was shocked and devastated, but my mother and all my wonderful friends gathered around me to help me through this horrendous experience.

What do you say about a man like Robert Shane Warenda? He was wonderfully sweet and funny. He could be terribly grumpy and infuriatingly self-depreciating. In his quiet, modest way he always tried to make people feel happy and at home in our apartment by finding out what tv programs or video games they liked and providing it for them. And, when our neighbour across the hall went into the hospital for a month, Rob graciously offered to look after her cat.

We went through a lot together within 21 years. Dating, love, marriage, a miscarriage, the death of both his parents and my dad and our cat Dandylion. We saw good times too, like the time we met Robin Williams, or the time I was featured on Breakfast Television, or, last year, when we went to England together.

Our love remained constant. We loved each other, believed in each other, supported each other.

Rob, my love, remembering our life together brings tears to my eyes and painful pangs to my heart, but I know that this will pass and I know that I'll love you forever.

A Hell of a Lot to Say

2009-10-02T15:51:00.000-07:00

And then, I was going to write about my trip to NYC in late August/early September.

Again, great fun, fantastic memories. I was just too busy to write about them.

A Hell of a Lot to Say

2009-10-02T15:38:00.000-07:00

I haven't written in a while.

So, I was going to write in August about my 51st birthday party, which was cool and fun.

So Much to Say, So Little Time.... (Part Two)

2009-07-12T14:21:00.001-07:00

Two weeks ago, Pride Week was happening on Church St. I love this part of summer! It gladdens my heart to be part of this festival that celebrates diversity, freedom, and acceptance.

During one of those days that the festival was on, Mom, Motria, Sarah, and I went to the annual underwear show at Cafe California. As we dined and gazed at the beautiful male models in their underwear, the hostess of the show (Candy Barr)

gave us a brief history on how gay activism started in 1969 when police raided a gay bar called the Stonewall Inn. Fed up with this type of harassment always happening to them, people started to fight back. At first it was 400, but then the numbers swelled to 2000!

This was how gay activism was born.

Upon hearing this story, I felt great admiration rise up inside of me ... and some envy too.

On June 25, 2009, I went to the latest anti-poverty meeting - and boy, was I disappointed! I had been to maybe four or five of these meetings before this and, at first, I felt very hopeful that this group was just what was needed to make positive change happen. ODSP reform and an increase in monthly funds seemed possible, seemed within our grasp.

I started being disillusioned with this anti-poverty group when I attended the meeting before the one on June 25. The main topic was whether or not we should allow "service providers" into the group. I still don't fully understand what that term refers to! Did they mean professional people, like doctors, lawyers etc? Or, were they including "service providers", such as people who run attendant care projects? (God help us all if this were the case!) And why was this the biggest question of the meeting? It had nothing to do with ending poverty.

It was more of the same at the June 25 meeting. It opened with questions about why numbers were dropping in attendance and how we could try to get more people involved. We then discussed how to further proceed. What should our main goals be? We were told by the facilitator that the Liberals had provided extra funds to low-income families with children, but still had not looked at the issues of ODSP. In fact, they told us that the McGinty government were dragging their heels on the promise of reviewing "silly rules" of ODSP (for example: 1) having a chunk of money taken away from recipients if they had a part-time job, which puts them no further ahead than before; 2) losing the ODSP pension altogether at 65, only to receive the Old Age Pension which is even less than ODSP; and 3) if a recipient has a credit card, which many people do because we don't get enough money to live on, it's viewed as extra income and, thus, frowned upon.) The fact that the McGinty government wasn't taking the plight of ODSP recipients seriously infuriated me, but no one else seemed to be bothered.

Someone suggested that we start out small by ensuring that ODSP workers treat us with respect and provide us with all of our rights and entitlements. Fair enough, I thought, this was a good idea that should be seen to ... sometime. I, personally, didn't think that this issue should be the first main goal of the group - especially since we had just heard that the McGinty government was dragging its heels on the promise of reviewing the operation of ODSP and still had not looked into the possibility of raising the rates to the poverty line - or above it!

The guy beside me suggested that we all go home and write down any thoughts about what was really important to us and where we should put our energies. I liked his idea and told him so.

And then, I suggested that perhaps we each could write a letter outlining all of our concerns and needs, and send a copy to McGinty and of all the polititians on Parliament Hill. They had to hear what we had to say and take notice of us, I said!

People nodded, sure, and some agreed with me, but they still appeared to me as overly cautious. More than once I heard someone say, "Oh, we don't want to do anything too big." The facilitator informed me that a similar idea had been brought to the table at another meeting a month back (I suppose I missed that one!) The group, she explained, was going to write our "stories" down and send them to our MPs. They were just waiting for the "storytelling template" to be designed by one of our members and sent out to everyone before we could actually start.

(It is now 20 days since that meeting and I still haven't received that "storytelling template". I somehow have a feeling that I won't be needing it, though ....)

If it hadn't crossed my mind to quit sometime during this meeting before this, it sure as hell crossed my mind now!

I always remember a few years ago when my friend Simone and I looked up disability activism in the US. What we found was a group called ADAPT (http://www.adapt.org) - and what they did was incredible!

In 1990, people from ADAPT took their protests to the steps of the US Congress. (http://news.google.com/newspapers?id=SgwQAAAAIBAJ&sjid=b4sDAAAAIBAJ&pg=6491,2252390&dq=adapt+white+house+steps+1990) To demonstrate the daily discrimination and obstacles that they faced, people got out of their wheelchairs and began to climb the steps - all 86 of them! The focus point of the protest was to show support for the Americans with Disabilities Act to be passed.

ADAPT is still doing gutsy things in order to be heard and get equal rights. Please watch this video, it's very worthwhile! Not everyone with a disabillity is forfunate enough to be able to choose where they live. (http://www.nickscrusade.org/wordpress/tag/adapt)

People with disabilities need to be heard. I feel very passionate about this! We are so hidden away from society, our stories of plight rarely, if ever, are known by the rest of the population.

On June 4, 2009, I read an article that Helen Henderson of the Toronto Star wrote. In essence, it validates what I have just said.

Last month, the province announced it has appointed consultant Charles Beer to conduct a review of the Accessibility for Ontarians with Disabilities Act (AODA).

It came into force in June four years ago, developing sets of accessibility standards and rules to be brought into customer service, transportation, information and communications, employment and the so-called built environment, which includes infrastructure. This year's review was mandated as part of the Act.

Beer, who spent a brief time as Ontario's minister of social services from 1989 to 1990, when the Liberals went down to defeat at the hands of Mike Harris, says he is still in the process of getting organized. He is expected to hand in a report by January.

Even though the AODA has been in effect for four years, "there are still a lot of people just realizing that they have to comply," Beer says.

This is disgusting! The AODA was put into place FOUR years ago, and the government is just now seeking to enforce the Act! Is it any wonder that many Canadians with disabilities feel frustrated and angry with our government's inaction?! Is it any wonder that we feel disrespected and invisible within our society?

I've written letters to MPs, appeared in newspapers many times, participated in protests, and, of course, voiced my opinions here in my blog. These are the ways I attempt to fight oppression and to make people understand what life is like for people like me. Although I am only one person, I hope I'm reaching people and educating them about what is at stake for us in order to truly be able to fit into society.

So Much to Say, So Little Time.... (Part One)

2009-07-10T14:44:00.000-07:00

People often say to me, "Anne, you haven't written anything in your blog in a while." I immediately wince, slap myself on the forehead in frustration, and curse the annoying fact that I don't have a clone yet to assist me with all the projects that I take on.

I love working on my blog. Besides painting, it is one of the most gratifying things I do in my life. To know that people are reading what I say and becoming informed about what it's really like to live with a physical disability and live on ODSP, and to know that I also bring the occasional smile or chuckle to my readers - that's an incredible feeling!

Sometimes after an eventful day, I think to myself, Yeah, yeah, I have to write about that! But then life takes over and I find that I have 20 emails to answer, or I forgot to pick up something at the grocery store, or there's a painting I need to finish in a hurry, or I need to do the payroll for my Direct Funding employees. Sometimes, too, after a long day, I just want to chill out and do an on-line crossword and watch TV.

The things that don't get said haunt me. They itch at the back of my mind begging to be released upon the never-ending scroll of this blog.

So, here is what I propose, dear readers: tonight, I'll tell you the story about my hospital stay last week. (Yuck, I hate hospitals!) Tomorrow, I'll take a break. I know I'll be exhausted after a full day at the market and then going out with Lamia, Motria, and Mishan for dinner and a movie. (The new Johnny Depp movie: "Public Enemies" - Yahoo!) And, then, on Sunday, I'll set down the stuff that's been kicking around in my head for a few weeks.

So, last Tuesday, I was having my usual dinner out with my mother and a couple of friends. I'd had maybe three mouthfuls when I felt something get caught in my esophagus. Chicken, I thought, probably chicken.

I didn't panic. This sort of thing has happened to me hundreds of times all throughout my life. Only a handful of times have I had to go the hospital because I couldn't dislodge the food myself.

Unfortunately, this was one of those times.

On Wednesday morning, I woke up and could still feel the lump hiding in my esophagus, so I told Lenny that I wanted to go to Mount Sinai Hospital. I've been to pretty much every hospital in the downtown area for one thing or another, and I've had the best luck with Mount Sinai Hospital.

It started off ok. I got registered, and we got into an Emergency Room cubicle almost immediately. And then, the long waiting began. Nobody came to see me for three hours! So, Lenny and I played Gin Rummy on the bed all during that time.

A doctor came to examine me, finally. I told him that I'd had something (probably chicken) lodged in my esophagus since the previous evening and that I couldn't eat or drink anything because of this. He ordered an x-ray to be taken of my chest area and for me to be put on an IV drip so I wouldn't become dehydrated.

They also took blood, and then they tried to thread a tube through my nose into my throat to see what was going on down there. Neither one of these experiences felt great! I almost cheered when they told me they were going to take me, knock me out, and get the chicken out. This was one thing I was familiar with and knew what to expect.

I went into surgery at 9:30 that night. They told Rob and Motria (by this time Lenny had gone home) that they could take me home afterwards, but I knew it was a lie. They never let you just leave after surgery; they always want to keep you in overnight for "observation".

Half an hour later, the doctor came out and told Rob and Motria that the operation had been a success. They had removed all the chicken and had had to even put in staples in my esophagus in order to widen it. It was the worst case they'd ever seen.

Rob and Motria were sent home, and I spent the night in the hospital. I slept most of the night, except for the nurse who checked my vitals hourly. I didn't mind that, it was expected.

The frustration came in the morning when the nurse shoved a bedpan under me and expected me to release myself while she stood over me and said repeatedly, "Are you finished yet?" I tried to get my communication board so that I could point to the phrase: I'm fine to be by myself, please leave me alone! However, although the nurse kept handing me my board but not close enough for me to reach. Not understanding her mistake, she kept putting my board away, saying, "Well, if you don't want it..." This, of course, frustrated me even more, and I wanted to scream!

Fortunately, another nurse came in and figured how to communicate with me. Although he was a tiny bit condescending (he spoke in loud and slow tones), I appreciated his kindness and patience. He helped me to drink apple juice and to call my my mother.

All in all, it is my fervent hope that I don't have to go back to the hospital for a very long, long, long time!

Those Who Truly Get It And Those Who ... Suck

2009-06-18T08:52:00.000-07:00

Yesterday morning, I felt extremely frustrated! Why, you might ask? Because I was writing a long email to someone at the seating clinic at Baycrest Hospital, voicing my complaints about the slowness of starting the ball rolling on getting a new seat & wheelchair. I reminded her that I had been to see her at the clinic two months ago to take measurements of my body and discuss how to proceed. (I was supposed to go back one month later to begin having the seat constructed, but the appointment got cancelled.) I explained to her that I had initially started my quest to get these badly needed items about six months ago, first with HME (Home Medical Equipment). HME kept me waiting for ages in order to get this "specialist" in to help design the seat, which he did - and it was horrible, I couldn't even sit on it! I then decided that I wanted to try the people at Baycrest, because I had heard great things about the seating clinic at there. I assumed that Baycrest would have its own team of specialists on seat construction. However, they're using the "specialist" from HME because the people from HME suggested that this might be the best route to take. I don't even know WHY HME is even involved in the seat design anymore! It sort of defeats the purpose of trying out the seating clinic at Baycrest, don't you think? And, of course, nobody showed me any respect by asking me if 1) I wanted HME involved with the seating (they can be in on the selection of the new wheelchair, no problem!) or, 2) if I wanted to wait for the "specialist" again! And, everybody involved seems to have ignored the fact that I've been telling them that my current seat gives me terrible back and shoulder pain.

And then, when I sent the email to the person at Baycrest, I got an automated response saying that she was on vacation until Monday. I almost screamed! Why did the process of getting any type of assistive device take so bloody long?

Like I say, I felt extremely frustrated. I was close to tears, face to face with all these roadblocks.

However, I had a date with Motria and Laura, and I was really looking forward to that. The plan was to meet at Milestones restaurant for dinner and then go see a movie. It was raining and Motria called to see if I wanted to cancel, and I said, "Oh Hell! A little rain never stopped me!"

So, at 4:00, armed with my raincoat and my joystick condom, I braved the rain and drove my chair down to Milestones. I arrived early, and since I didn't want to sit outside getting even more wet, I went inside.

Well, I was face to face with the maitre d', so I thought, "okay, why not try to converse with this guy, and try to get a table?" Amazingly enough, I had no trouble doing this at all! And then the waiter came over and asked if I wanted a drink. At first he asked if I wanted pop, or water or coffee, and all I could think was I want BOOZE! I patiently spelled out "C-O-R-O-N-A" and he finally understood. He got me the beer, pushed in the lime and opened my menu. A few minutes later he came back and took my order.

I was so incredibly happy! I felt respected. They treated me like any other customer, and I really appreciated that. It occurred to me, "isn't it odd that the system which is supposed to be supportive of my needs isn't nearly as accommodating as a regular restaurant." HME and Baycrest hospital sure could learn a lot from Milestones!!!

Well, anyway, Motria and Laura came a few minutes later to join me. We had a fantastic meal, and we chatted and laughed the whole time. Then we went to see "Night at the Museum: Battle of the Smithsonian" at the IMAX theatre. It was a blast!

The evening ended much better than the day had started.

Dog Eat Dog at Woof Stock

2009-06-15T14:44:00.000-07:00

So, this past Saturday was the Woof Stock festival at the St. Lawrence Market. I don't like Woof Stock. Yes, I love dogs, but the festival sucks, especially for vendors like me who stay inside because all the potential customers stay outside.

Well anyway, at 8:30 am while I was sitting and waiting for Laura to show up and assist me with selling my wares, this couple came by my cart. The man seemed genuinely interested in my art, and even said, "Wow!" However, his female companion very snobbily said, "Oh these artists at the St. Lawrence Market are a dime a dozen."

Bitch! Little did she know how close she was to having me chase her down and run her over! I wasn't in a great mood and I hadn't had my coffee yet.

Her comments stung me and still hurt to this day ... I'm thirsty - I need a drink of Whiskey to wipe out the memory. Or maybe a Corona, like Johnny Depp drinks (it says so in Vanity Fair). How could that woman say that about artists? With those few nasty words she disregarded all the hard work and struggle we go through. I don't know about her, but I stay up until maybe 2 or 3 am working on a painting. And, like other artists, I try to make my art as unique as possible. I mean, who ever heard of an artist like me? I paint with my index finger, and sure I paint dogs and cats, but I also paint the struggles people with disabilites go through.

Dime a dozen my ass! It's more like bastards are a dime a dozen. If I had the money I'd buy all the bastards and send them off to another planet.

Closure.........

2009-04-13T09:17:00.000-07:00

So, this past Saturday, after working 8 hours at the St. Lawrence Market, I decided to go and confront the Maple Syrup Man and try to return the maple syrup I had bought from him the week before. (I had thought about simply using it on pancakes etc, but I just couldn't bring myself to do this because I didn't think I could enjoy it after all of the emotional turmoil I had felt.)

I didn't swear at him or try to act confrontational. With Laura's assistance, I told Maple Syrup Man that I was returning his syrup because I had felt offended by his comment re my inability to manage my own money. (He didn't know me or anything about my life! How could have put such a false label upon my being?) I also told him that I'd never buy anything from him again.

Maple Syrup Man didn't apologize, nor did he accept responsibility for the mental anguish and humiliation that he caused me. In fact, he flatly denied saying anything at all about my inability to handle my own money.

(Laura and I looked at each other in disbelief. We had both heard him with our own ears! How could he deny what he had said?)

Maple Syrup Man then tried to defend himself further by stating that he had only meant to complement Laura on the way she "took care of me".

Mentally, I screamed and ranted in my head. Didn't he realize that that comment was offensive too? Would he have gone up to the assistant of, say, Donald Trump, and commend them on how well they were "taking care" of Donald? I think not! I run my own art business; I manage my own attendant care business; I take care of my household, making sure there's enough food and essentials in our home. I'm a bright, capable person, and yet, that single comment seemed to put a dark shadow over all of my accomplishments.

Laura and I rolled our eyes and headed home; we knew there was no reasoning with Maple Syrup Man. He just had his own way of thinking. At least I had closure by returning his maple syrup.

But there is an even sweeter ending to this story; today Sarah brought me a huge jar of maple syrup. When she and her family heard that story of the Maple Syrup Man they put aside the maple syrup from their farm in Ottawa, just for me.

Thank you Sarah and family!

Horoscope-smoroscope

2009-04-04T14:31:00.000-07:00

So, this was my horoscope for today:

Leo (July 23 — Aug. 22)

You are lucky. It's not clear what you've done to deserve this but Venus, the love planet, has something amazing in store for you.

Sounds fantastic, right? Of course. Now, I'm not one to put any stock in horoscopes - they're just for fun! However, for the past month or so, the Star's predictions have been eerily dead on. So, feeling slightly ridiculous, I was guardedly optimistic that today would be a good, if not great, day for me.

I should have known better. My lottery ticket didn't even have a single number (I almost always win at least a free ticket); it was cold and blustery and miserable on the way to the market; and, sales, sadly, were down today too. Oh, yeah, and the violin player drove me to distraction! He is such a terrible player!

Still, I remained optimistic. Happy, even.

Laura and I left at 4pm to head home. Motria was waiting for me there with a burger and Iced Capp. However, Laura and I crossed the street and started going along the perimeter of the north market where I spotted this guy selling maple syrup. Feeling like a treat, I chose the smallest and cheapest bottle ($3.50). Much to my amazement, the guy told Laura that he had a "severely disabled son" and that she shouldn't let me spend my money foolishly like his son was always doing.

I wanted to stay and tell him off. Laura wanted to stay and tell him off. Instead, knowing we had to hurry, we continued on. However, we periodically stopped to fume about that jerk. It was so incredibly rude to me, he didn't know me from Adam! I could have been rich - he didn't know! And that's odd that he let me buy his wares, then told Laura not to let me waste my money! We also felt sorry for his poor son, being labled by his own father as "severely disabled" and apparently a spendthrift.

As you can tell from my previous blog entries, this sort of thing happens to me frequently. Usually I can deal with people who don't understand, by either shrugging it off and leaving, or trying to reason with them. However, because of the week I had, this was not easy for me to just shake off.

It was a week full of hopeful things with bad things attached to them. First I learned of the government institutions closing down this week - fantastic! (check out the story in the Star: http://www.healthzone.ca/health/article/610878. Great article, except that they don't mention the abuse that went on in these institutions for 200 years.) There was a film made recently about the clients of these institutions, and their stories were truly shocking. One person tried over and over again to escape, and he did, but he jumped on top of a train and slipped off and got his legs cut off. Still, that didn't stop him from trying again. It makes you wonder how terrible it must have been to live in one of those institutions. It also makes you wonder what kind of society we live in that we would allow this to happen for 200 years.

This past Thursday and Friday, I attended a conference hosted by the ODSP Action Coalition. Again, this was a very hopeful step. People believed in reforming ODSP, and giving dignity to its recipients. However, some things disturbed me: for example, I learned that hardly anybody can afford both rent and food. I also learned that 80% of people on ODSP who get married have their marriages end in divorce, because ODSP takes money away from one partner. No other social assistance program does that. It also disturbed me that most of the group seemed cautious about how to proceed. Their attitude was that we shouldn't ask for too much, because the government won't give it to us. One woman thought that she was so bold when she yelled out that we wouldn't stop until we had reached the poverty line. I told her no, no, no, we need to go past it and get a living wage!

Also, this week I had one of my friends tell me he wanted to die, and that really upset me because I love him. It upset me, too, because I know where this all comes from; his past was terrible, and he has very little support in his life. Society has failed him in many ways. I love him, and I won't let him give up. I've been in the that darkness, too. I've realized, though, that if people like my friend and me give up, then that's two less people to fight on - and we will fight on, no matter how many jerks there are.

In closing, if you're ever at the north part of St Lawrence Market and you see the guy selling maple products, do me a favour: either boycott him or tell him not to be so rude to his paying customers. Or tell him that Anne Abbott says, "fuck you!"

Memories of My Dad

2009-03-14T18:23:00.001-07:00

All day long, I kept thinking: Where did a decade go? I can't believe it's been 10 years since my father died.

I can still remember the day my mother called from Florida to tell me the news. I was extremely sad but not shocked because Dad had had Amyloidosis for 5 years, and during the latter 2 weeks of his life his condition had gone down hill speedily.

My father was a strong, quiet man. He loved his family but could be aloof with people he didn't know very well.

He loved playing tennis and watching western movies or tv shows. Mom still has a ton of old slides in her storage room from when Dad used to take pictures of holidays, birthday parties, and vacations. My parents would invite family and friends over and force them to watch an hour's worth of slides, placating them with cocktails and humerous conversation.

Our family took a trip all along the east coast of Canada. I don't remember it, though, because I was 4 or 5 at the time.

I do remember going to Texas and seeing the Alamo. ("Remember the Alamo" was the slogan, and I always have!) I remember my dad carrying me down into the Carlsbad Caverns in his strong arms. And, when I was a bit older (10 to 13), I remember Dad laughing at me for having my nose constantly in a book during our yearly drive to Florida.

I loved my dad, of this there is certainly no doubt. However, love is never just one-dimentional; it has many facets. In some ways we were a lot alike, in others ... not so much. We both demonstrated tendencies towards compulsive neatness and orderliness. We both shared a love of beauty and knowledge, curious about everything. And yet, my Dad had an introverted personality with some old-fashioned thoughts. I, who had my childhood in the Flower-Power, "All You Need is Love" 60's, and my teens in the women-liberating, war-protesting, sexual revolution 70's, sometimes disagreed with my father. I was young and fun-loving; I found my father to be way too cautious and pragmatic in his approach to life.

At one of the lowest parts of our relationship, my father said to me, "One day when I'm gone you'll miss me, Anne." I shook my head admantly, angry at him (I can't even remember why!) and thought: Never, never, never!

For the rest of my life I've regretted saying that to my father and hurting him like that. In the latter years, before his death, I tried to make amends, to get closer to him.

My father was right. He's gone, and I miss him. I wish he could see how well I'm doing.

(http://www.mayoclinic.com/health/amyloidosis/DS00431)

York University Speech

2009-03-11T10:04:00.000-07:00

Yesterday, Lenny and I gave a speech to a group of medical students at York University. It was a good experience; the students seemed genuinely interested in what I had to say.

This is my speech:

Hello. My name is Anne Abbott, and, beside me is my communication assistant and friend, Lenny, who will be reading my speech to you. If you have any questions afterwards, I will point to the letters and phrases on my low-tech communication board to answer your questions.

First of all, let me explain that this type of communication is called Augmentative Alternative Communication, and a person, like myself, is often referred to as an AAC User. An AAC User would commonly use a voice output device, or a low tech display board. An AAC user may also use facial expression, body gestures, and vocal tones to relay a want or a need.

Fifty years ago, I was born with Cerebral Palsy. As you probably know, Cerebral Palsy affects people in a wide range of ways, and all, surprisingly, very individualized. For me, it left me unable to verbalize and to walk on my own. Plus, my fine motor skills are not so fine.

I learned early to adapt to my situation. With great determination, I tried my hardest to do what other kids were doing. Sure, it's true that instead of walking I got around in a wheelchair, but I taught myself how to crawl up and down our basement stairs on my hands and knees in order to play games with my brother and his friends.

As for not being able to verbalize speech, my husband Rob always says, “For someone who can't speak, you sure talk a lot!” And it's true! Whether it's serious or humourous, an off the cuff comment or a heartfelt opinion, I have a lot to say.

Right from the very start, as far back as I can remember, I was determined that I was going to communicate. Some how, some way I was going to find a way to express myself!

Like most toddlers, before you learn to speak you learn how to use gestures with your hands in order to make your family know what you need. I was no different. A finger to my mouth meant “I'm hungry”, a hand against my cheek with my eyes shut meant I was tired. And, of course, I learned that facial expressions and eye gazes were another excellent way to communicate.

However, as I grew older I became frustrated. I wanted more! My family could speak in full sentences. They could convey emotion and provide news within a few moments. Why couldn't I?

Eventually, I learned the alphabet and how to read. My teacher suggested to my mother that she should get a piece of cardboard and write down the alphabet and 'yes' and 'no' for me to use as a “speech card”. Finally, I had a faster way to communicate. Sure, I would occasionally misspell words but I gradually learned, by trial and error, to be a good speller.

The members of my family were all avid readers and good spellers, so they had no problem communicating with me. It was only when I started to venture out into the public on my own that I started having problems with communication. Some people were okay; they were patient enough to try to figure out what I was saying. However, there were others that just didn't get me. Right in front of me, I would hear them say things like, “Should she be alone?” I would point to words and letters on my communication board, and much to my annoyance I would hear people saying, “What do you think she wants?” From these kinds of experiences, I learned two things: one, to be patient with people who are actually trying to communicate with me; and two, if people don't understand what I'm all about, and they show me very little respect, I simply leave.

Unfortunately, there are times when a person like me can't just leave. People like me, who use Augmentative Alternative Communication, are frequently, and wrongly, silenced. Because of a lack of patience and understanding, or perhaps even a fear that they'll look ridiculous if they can't figure out what an AAC User is trying to say, people will often take away the person's Communication Device. This happens within the homes of AAC Users, where there is on-site attendant care. It can also happen if AAC Users are still living with their families, and unfortunately, it can often happen in hospitals or in nursing homes as well.

This is the most humiliating thing that you can do to someone who is an AAC user. If you saw someone with a cane walking down the street, you wouldn't suddenly grab it away from them, thinking that they didn't really need it, would you? Of course not. You seem like nice people.

Like I say, I use a low-tech communication display in order to interact with people. I designed it myself, putting in the words and phrases I use most frequently. And, I have the alphabet, too, so I can spell out more detailed messages.

People often wonder why I don't have a high-tech device, one that has a voice. I've tried different types of voice-output devices before, and, to tell you the truth, they're just not for me. The voices are mechanical, they frequently mispronounce words, and operating them tires me out. Not to mention the fact they break down and need to be fixed or replaced every so often. I much prefer having a communication assistant; it feels much more personal and comfortable to me.

However, some AAC Users like voice-output devices and prefer them to anything else. Still other AAC Users use a combination of both techniques. And still others use neither, relying instead strictly on eye gaze or gestures. It really depends on the individual. I should also mention that although I have sentences and the alphabet on my board, other AAC users have symbols and words. Some people use direct selection with their finger or a head pointer, other people simply use eye gaze to make their selections.

It takes patience and some intuition to start communicating with an AAC user. You have to be good at looking for cues in body language and facial expressions. This is not to say, however, that you're supposed to be a mind-reader. Make sure 100 percent that you got the message from the AAC user absolutely right before continuing the conversation. Use 'yes' and 'no' to confirm that you understood what they said. Also, some AAC users have different signs for 'yes' and 'no,' so make sure you know what they are beforehand.

In closing, I would just like to say that people who use AAC are just like anybody else; we have the same feelings and thought and dreams. Take me for example: I'm married to a fantastic guy named Rob, we have two lovely cats named Hershey and Rascal whose images I use in a lot of my art, I have a business called Annie's Dandy Note Cards and Artwork, and I'm president of an organization called Speaking Differently.

Thank you for having me here.

People Who Get it, and Those Who Don't

2009-03-09T13:58:00.000-07:00

So, this blog entry is about this past weekend (March 6-8)

First of all, on Friday Sarah and I were going to meet Aaron and Lamia at Tim Horton's. Sarah and I got to Tim Horton's and chose a seat, but we got a call from Aaron saying that they might be a few minutes late. So, because I was having such a hectic day, I asked Sarah if she would mind picking up my cards at TPH (The Printing House), and she said, "No Problem!"

I sat there on my own at the table, minding my own business. Suddenly this woman came and sat down beside me. I was surprised and annoyed, but I thought maybe she'll just leave in a minute. She did not. Instead she took out two pills, popped them in her mouth, and took a sip of her coffee. The woman did not speak to me, nor did she even acknowledge my existence. This started to make me feel uncomfortable. I thought about going after Sarah but then I thought No way, this is my table! Why should I have to leave? Then, what really made me mad, the woman began talking to another woman who was sitting behind me. They were discussing between themselves whether I was ok or not. Did I need help or should they call someone? Finally I exploded! I got the attention of the woman sitting beside me and pointed on my board to: Get Away From Me!

Right about then, Sarah came back to this melee and I told her what had happened. The woman was saying, " I was only trying to help, I am from March of Dimes." Maybe I roared at that comment - I can't remember - but I was infuriated! I know so many people who have terrible attendants from March of Dimes. To say that she was from March of Dimes and seem to actually seem to be proud of this fact - that made my blood boil! Not to mention that she sat with me and actively humiliating me by talking about me to another person and yet not trying to talk directly to me at all. This is not acceptable behaviour for anyone, but especially for someone who works for an organization like March of Dimes which is supposed to be helping people with disabilities lead good, productive lives. March of Dimes workers should know better!

The woman finally left, and I calmed down. Then Sarah went up to get an Iced Capp to soothe my ravaged soul, and another woman came and sat down beside me. This time, however, it was somebody who knew me. She told me her news, I told her mine. It was a pleasant experience. I felt respected, included, and part of the great weave of society.

Well, then on Saturday I had a fantastic day! However, once again I was faced with this polar opposite comparison between people. Let me tell you about it.

I sold two smaller paintings. Fantastic! Fantastic! Fantastic! I met a journalist from the Chicago Sun-Times. He said he was going to do a story on the St. Lawrence Market and he might do a feature on me - how exciting! Then this guy from Ottawa came over to see my art and bought some cards. He told me he was an architect, and I jokingly suggested: Why don't you commission me to do paintings for your building? He thought that was a great idea! He said he might commission me to do several smaller paintings for one of his new buildings. I was so happy!

Some of my regular customers from Indiana came to see me. I love it when they come to visit because they are always very upbeat and interested in my art and in what I have

to say.
One of the people from Indiana was curious about my painting "Feelings of Invisibility," asking if I actually feel invisible. I explained to him that yes, sometimes society makes me feel as if I am invisible.

It was around this time when two burly cops came and started asking my friend and employee Laura questions about a man who was murdered in the neighbourhood. I sat right beside Laura while all this was going on and neither one asked me anything or even looked at me. That's terrible! What if I had some important information? I turned to the guy from Indiana and said "See what I mean?"

Oh well, some people get it and some people don't.

Holy Grail of Funding

2009-02-26T19:52:00.000-08:00

A few years ago, I was in a film called "Independence Unlimited" with my friend Aaron Shelbourne. (You can watch this film on YouTube.) It was a film that compared the life of someone like me, who was fortunate enough to get Direct Funding, to someone like my dear friend Aaron who wasn't as lucky.

In this film, I referred to Direct Funding as the"Holy Grail of Funding". It is. I mean, receiving any kind of government funding is difficult (that's why I had to wait 6 months to get my commode!) But Direct Funding is extremely difficult for people to get. And that's not fair! Other types of funding are for assistive devices (wheelchairs, walkers, voice output computers etc), and, sure, these things are important, but, to my way of thinking, Direct Funding is even more so.

I remember before I had Direct Funding, my life was terrible. The first place I lived in was an apartment in Thornhill. The apartment building had 24-7 on-site attendant care. I communicate by spelling out words and phrases; most of these attendants had mild to difficult spelling/reading limitations. I was so frustrated! I suggested to the manager that maybe I could get the few attendants who had no trouble communicating with me to do my bookings. The manager said, no, it wasn't possible. I'd have to take whoever came to me. No matter how difficult it was for me or how I felt.

I could write a very long list about what happened to me at the hands of attendants (both in Thornhill and in Toronto), but I will simply say that I have been on Lorasepam for 7 years now because I can neither forget nor forgive those who hurt me, not just physically but emotionally.

On January 27th, 2009, it was my 3rd year anniversary of having Direct Funding and be able to hire my own attendants. It was the best thing I ever did! I'm 100% happier than I used to be!

The people I've hired are all fantastic! They want to assist me; no request is too much for them. They like and respect me, and I return the sentiment.

It is my fervent hope that one day that Aaron and people like him, who are in the same bad place that I used to be in, will get Direct Funding and gain control over their lives.

Please go to http://www.youtube.com/watch?v=Hl6HpdYwryQ to see "Independence Unlimited".

Thank you.

Good Commode

2009-02-26T19:34:00.000-08:00

Bad Commode

2009-02-26T19:25:00.000-08:00

Happiness is

2009-02-26T13:59:00.000-08:00

... getting my flaming new commode after 6 long months! Yahoo! I can't believe it!

After 6 loooooooooooooooooooooonnng months, HME finally delivered it to me today. Was it worth the wait? YES!!! It has a stainless steel frame so it'll never get rusted out, its height is adjustable, and the seat is very nicely padded so my ass won't get sores on it any more.

Will Accept Money to be Talked to Condescendingly

2009-01-21T21:18:00.000-08:00

Sometimes, especially lately, I've thought about how cool it would be if I could do short comedic video podcasts about what it's like to be a person who's unable to speak and uses communication assistants in order to interact with family, friends, and the general public.

Yesterday, I was having dinner with Mom, Motria, Alison, and Sarah. We were celebrating Barak Obama getting elected. (Yay!) And, we were all chatting and eating and having fun.

Well, at one point, I was trying to tell Motria something but she was sitting across from me and, thus. it was difficult to do. So, I looked beside me at Sarah, who was my delegated employee/communication assistant/compadre for the evening, and signalled to her that I required her assistance to communicate with Motria. Seeing that Sarah was munching on this huge mouthful of salad, I gave her a moment to swallow. And then, I laughed and spelled out on my communication board: "I guess I can't talk with your mouth full."

Well, then, today Lenny and I were finishing up our snacks at Tim Hortons, this woman came over to our table and started talking to Lenny. At first, I thought the woman was asking Lenny a question pertaining directions to the subway or somewhere. This was not the case.

The woman was asking questions about me, as if I was an inanimate object or something. Was Lenny a family member of mine, or perhaps a care giver?

This type of situation has happened to me all of my life. People either talk down to me as if I'm a child or they talk about me to another person because they think I'm deaf. It's annoying, but I'm used to it. Most times I just ignore this type of situation, as this happens to me almost daily and it would take too much time and energy to educate every person that needed it.

And yet, there are times, like today, when I just have to speak up! With Lenny's assistance I told the woman, "I can hear, I'm the employer and friend of the person you are talking to. Please show me the respect you're showing my friend and talk directly to me."

The woman listened to my impassioned speech and then said in a loud, very enounciated voice, "Last year you came to my store..." (here she paused and asked Lenny if "she can hear") "... and I purchased Christmas cards from you. I'd like to give you the money from the sales now." And, with that, she placed $20 on the table and rapidly fled the scene.

Boy, egg on my face! One of the few times I speak up for myself and it turned out to be a customer (perhaps a former one now!) who had gotten cards from me. Hilarious!

I, of course, took the money and ran. Being on ODSP, I take any free money I can get - I need to eat after all! I'm not proud.

And, by the way, during this entire interaction I was extremely high. I don't usuually take my pot chocolate very often, but lately, because my back and neck have been giving me excruciating pain and I have bad sores on my upper back and thigh from my commode chair, I've been taking a bit extra to numb the pain.

Such is life ....

Anybody have a video camera?

Supporters

2009-01-12T09:46:00.000-08:00

This painting to the left shows me as a 3 year old, first starting to paint in my highchair. The paint drips onto the floor and splatters outside the black and white photo. Three words are formed: Sexism, Classism, and Ableism. The painting is called: "Where Has My Innocence Gone?"

Where indeed.

I used to be rather sweet and kind of naive about how the world worked. You know how it is. In the beginning, you're pleasantly ignorant about how bad some people can be, about how governments orchestrate wars, and about how unequal and unfair the world actually is.

I've become slightly jaded. I feel especially jaded when I talk to the people at ODSP (Ontario Disability Supports Program) and HME (Home Medical Equipment). The swear words in my head just repeat over and over. I get so bloody frustrated by these people who are supposed to help me and are supposed to have some knowledge about disability issues. Grrr!!!

Waaaaay back in August, the saga of my commode chair began. The wheels were very stiff and it was difficult for my employees to push. Plus, one wheel looked like it was going to come off, which was dangerous for me. So, I called HME and asked if they could fix my commode chair, and they said they didn't think that they could fix the wheels because they didn't make that model any more. They then told me to call ODSP and ask them if I could apply for a new commode chair. I did, and ODPP told me I would have to get an assesment from an OT before I could order a new one. Inwardly I groaned, because it meant more bloody red tape. (What's so complicated about choosing a new commode chair? I can do it myself!) However, Motria who had just graduated from OT college said she could order a new commode chair from a different place, and it would only take two weeks. However, nothing is ever that easy in the world of disabilities!

They sent me out a loaner commode chair right away. I sat in it and thought I was going to die! The seat hurt my ass and the back had a rough surface which cut into my back. The next day I called them and asked them to please pick it up, and to please send out an OT who could assess me and get the ball rolling. Well, they never did come to pick up the commode chair, although they did claim that they had been by, but I sure never heard them ring up to our apartment! Rob spends 99 per cent of his time at home, so I don't know how Rob could have missed the call.

Well, the OT finally came and she was nice but she didn't show me any types of commode chairs. She just asked me questions about my life, and asked me why i wanted a new commode chair. (Well, duh! I wanted to excremete without fearing for my life!) She said she would come back with more questions in a week.

Well, then I kind of took things into my own hands. My dear friend Aaron gave me his old commode chair, because he had heard of my plight. Maybe I was too hasty, but I threw out my own commode chair, thinking it couldn't be repaired anyway. Unfortunately, Aaron's chair began having similar problems with the wheels. Bloody hell! I was right where I started. Not only that, but the OT place that had sent me their commode chair was now sending me bills for the rental charges!!! Bastards!

It was now the middle of September, and I had an appointment at HME to get fitted for a new seat for my wheelchair. Now then, you need an OT to get fitted for a new seat so there was one there and I knew her very well. Also, i was in the "show room" of HME surrounded by new wheelchairs, and guess what? Commode chairs. I sat in one, loved it, and asked the OT to please order it for me. Simple, right? Not so much.

The assessment and quote were faxed to ODSP. I also got rid of the commode chair from the OT place without paying one red cent. Things were looking up, or so I thought. Three weeks went by and no news, so I called HME to see what was going on about my new commode chair. I played phone tag for maybe two weeks, getting more and more frustrated. Occasionally I would hear from them, but all they would say was that they would look into it. Just before Christmas I started talking to someone else, and they sounded positive that they could get the ball rolling.

Two weeks ago, I called HME one more time repeating for the millionth time that I really needed a new commode chair because I was getting sores on my ass and back, what was happening with my new commode chair? I almost screamed at the woman's response! She said she called ODSP and they said to get my commmode fixed. They would need the original bill faxed to them. I said, are you kidding me? I don't want my commode chair fixed, I want a whole new chair! I threw out my old one because you guys said it couldn't be fixed! She then directed me to call ODSP myself, and explain to them what had happened. I did, and the woman at the ODSP office said, so, you want your commode chair fixed. You have to get HME to fax me the original bill. Stifling a scream, I gathered my patience and explained to her that I wanted a new commode chair, not to have my old one fixed. Her response was, well, you know you need an assessment from an OT. My frustration mounting, I popped a Lorazepam and explained that I had already had an assessment back in September, didn't HME send you that? Apparently not, she had only received the quote. I was directed to call HME and tell them to fax the assessment to ODSP. The people at HME said, oh yes, to get a new commode chair, you needed to get an OT assessment, and she would try to find me one. I almost did scream then, but very patiently explained that back in September, your OT already did assess me, find the original fax and everything will be fine.

God willing everything will be fine from now on, because HME told me they faxed both the assessment and the quote to ODSP, and ODSP told me they received it.

Pardon me while I go scream and take another Lorazepam.

Ciao.

Weird Dream

2009-01-11T16:30:00.000-08:00

The other night I had this weird dream. I was climbing the side of a mountain, happy as a clam, free as a bird. And then, I happened to look down and saw that my dear cats, Hershey and Rascal, were following me up the mountain. They weren't mountain lions, though, nor did they have oposable thumbs, so they were having great trouble holding onto the ropes. Fearful that they might fall, I screamed for help! Immediately, right above me, I heard the calm, reassuring voice of my husband Rob: "Stop worrying, Anne. I got them, and you too. I won't let any of you fall!"

And then I woke up, happy in the knowledge that my dream was a reflection of my life with Rob. I knew that he loved me and would always be there for me.

Last Tuesday (January 6th), we celebrated our anniversary: 13 married, 21 together.

We started chatting to each other on a computer BBS (Bulletinboard System) just a little over 21 years ago. He was funny and sweet, and I liked him. He liked me too. We chatted online for hours and hours and hours.

I didn't tell Rob at first that I had a physical disability. I was afraid to because I thought he might feel different about me. Besides, I thought, I'll never meet this guy.

Of course I was wrong. Rob kept saying that he wanted to meet me, and, of course, the more I chatted with him the more I wanted to meet him too. So, I told him that I had CP, I was non-verbal and used a communication board, and that I used a power wheelchair to get around. He said he didn't care about any of that. He said he still liked me and still wanted to meet me.

We met at Magoo's icecream parlour at Scarborough Town Centre. My friend Louise and my mom came with me because they were concerned that Rob might be some weirdo or something.

Rob and I clicked immediately, and we fell in love soon after. Twenty-one years later, through good times and bad, we're still together and still in love.

Happy anniversary, Sweety!

Elevators, Cats, and Commissions

2009-01-04T19:00:00.000-08:00

Ok, so, yesterday Motria and I were having a small debate about the rightness or wrongness of letting your pet cat go outside on a daily basis. Motria told me about her friend whose cat had recently been outside and had drank anti-freeze and died. I said that's why I don't believe in letting cats roam free. And then Motria said that her friend thought that keeping cats inside was like torturing them.

The debate didn't continue much further than this because we had to get going to the market.

However, as I sat in front of my building's two broken elevators, waiting for at least one to be fixed so I could go downstairs and go out, I did feel an ounce of pity for those poor house cats that were never allowed to venture outside.

And, of course, I felt some pity for myself as well. I sent Motria off to the St. Lawrence Market with a bag of my cards, and I told her I would be there as soon as the elevator was fixed. While I was waiting I dozed occasionally and rolled my eyes at people who walked by and said to me, "the elevator is broken you know?" Well, Duh! And I also thought about how terrible this situation is. Not just for someone like me, who is in a wheelchair, but for people who are elderly and have trouble walking upstairs. And I also thought about how it is an issue of classism, because my mom lives in a beautiful condo and her elevators never break down.

I waited there from 8am until 10am and as soon as the elevator door opened I was in it like a shot! Glad to be free, I zoomed to the St. Lawrence Market and took my rightful spot. Unfortunately, not long after I got set up this annoying vendor, who I've mentioned before, came along and told me I was too far over on her side. Even though I was in the exact same spot I always am! However, I swallowed my pride and let Motria and her move my cart about half a foot because I knew the vendor to my right would not be coming anymore. I gritted my teeth when the annoying vendor asked me if I would be at the St. Lawrence Market all winter. Then she suggested maybe I should move my chair a bit forward. I rolled my eyes and ignored her. Give me a break!

From then on the rest of the day was fantastic! My sales were very good for January. And I had so many people come up and rave about how fantastic my art is! That made me feel good, like I am not wasting my time. A lot of people said they would commission me for a painting, but unfortunately no one actually gave me any money or definite dates. Still, I am hoping someone will come back.

Such is the life of an artist....

The Joyful Holidays (part three)

2008-12-25T22:43:00.000-08:00

And thus, this brings me today: Christmas Day.

It started out ok. Rob and I exchanged presents, and later kisses. We both liked what we gave each other. Motria and Lenny watched as the cats played with their new toys too.

One disappointment: my ring from Brighton broke. Oh well, I'd keep it as a momento anyway.

The ride on Wheel Trans was nice. The driver was new, respectful, and cheerful. Wow!

When I got to Mom's place, we sat and ate date squares and shortbread cookies, and chatted. It was lovely.

Things started to fall apart from there...

It all started when Mom asked me if Rob liked one of the presents I bought for him: The E-Cigarette. And, I explained that yes, Rob was happy with it and was dying to try it out, but the plan had always been that I'd get him a few Accupuncture treatments first (like I had done for him before we went to England) to make the cravings go away. After that, he could use the E-Cigarette to help him stay off cigarettes for good because, shaped like actual cigarettes, they would help with the phychological withdrawl of having nothing in his hand all the time.

Well, then, my brother piped up and he said he didn't understand why people had to use tools to quit smoking. He had gone cold-turkey when he quit, why couldn't everyone do the same? I said that I had read somewhere that addiction to cigarettes was worse than Heroin addiction. My big brother ignored that comment and suggested that perhaps Rob (and other people I won't mention) were "inactive" ("staying home, doing nothing") and this was the reason he/they couldn't quit smoking.

This really got me fired up! Rob helps me with my daily needs every day, without hesitation. And, when I had the 24 hour flu on Monday night, he stayed up with me. Inactive, my ass!

And then, I mentoned that I knew a lot of "active" people who had trouble quitting or were still having trouble quitting. And, Mom pointed out that Dad, a very active tennis player quit cigarettes in his 30s and started smoking a pipe right away and, until his dying day, never gave that addiction up.

There's more, but I'm tired. It's 4am.

Just the highlights:

Mom said that I shouldn't pay any attention to my brother. Yeah, right, don't tell him not to start the whole thing in the first place! Thanks, Mom.

To add insult to injury, my mom loudly suggested that perhaps I was in "the change". She didn't understand why I glared at her, but I've been hearing this lame suggestion from her since I was 38!

Oh yeah, and on the way home, the Wheel Trans bus broke down and I had to wait for another one.

What an clunker of an ending to Christmas!

The Joyful Holidays (part two)

2008-12-25T22:10:00.000-08:00

And then, yesterday (Christmas Eve), I had another successful party.

Motria very kindly cooked a turkey dinner (which was delicious!) and brought it over to our place. Thanks, Mo!

And Nic came over, bringing French wine and Christmas wine. He, Rob and Motria played video games all evening.

I brought chips, dip, and my sparkling personality.

Everybody was happy!

The Joyful Holidays (part one)

2008-12-25T21:45:00.000-08:00

So, on November 28th, I had an art show/Christmas party. All my favourite people came, and it was a tremendous success.

I was happy!

What's Up Doc?

2008-11-17T16:19:00.000-08:00

So, what have I been up to since I last wrote?

Well, I've hired 2 new employees who are fantastic! Amy and Laura, welcome! I promise to be a good and fair boss.

For Halloween, I dressed up as a Canadian tourist in England. I wore the goofy looking tourist hat that Rob bought me for my 50th birthday while we were in London. And, I wore my "Good Girls go to Heaven and Bad Girls go London" t-shirt and the gold mini skirt that Sarah bought me. Oh yeah, and I had the necklace that I got from the Brighton boardwalk on and the large blue pendant from the London Eye. Perhaps I didn't look scary, but, at least I was original

Work-wise, I've been, as usual, busy, busy, busy! St. Lawrence Market has been much more busy, I've received several commissions for paintings. I'm having an art show/Xmas party on Nov 28th, and I'm trying to get ready for my Pawsway gig on the weekend of Dec 6th-7th.

As if my life wasn't hectic enough, I agreed to be a co-presenter today and talk to a group of medical people from the Ontario Hospital Association.

The topic was on how to improve communication between medical professionals and patients with communication disabilities (e.g., CP, MS, ALS, and people who have had a stroke or brain injury.)

It was explained to the medical professionals that using an alternative method of communication (e.g., low-tech alphabet/word board or high-tech computerized voice-output devices) were vastly different, and the way in which people used these devices were also vastly different. Thinking up simple mode of communication for all patients with communication disabilities would simply be impossible!

My colleague was overly enthusiastic and barely allowed me to say anything at all! However, I did get a couple of important things out there: 1) whether a patient uses a high-tech or device, they usually also use eye gaze, body language, or facial expression. And, 2) It is very important that you, first, discover how that particular person communicates and what their preferences are - like where to put their device so that they can access it easily.

My colleague told the medical professionals a horror story about a guy she knows. He had CP and, like me, communicated with a low-tech alphabet/word board. When he went into the hospital, they immediately took his board away and put in a drawer for "safe keeping". Worse still, they gave him food every mealtime but never inquired if he needed any assistance to eat. He almost died from starvation!

When I returned to the table to finish my lunch after the presentation, I told my own horror story. It was about my friend Cookie who went into the hospital for a simple procedure and the hospital tried to persuade her to get a G-tube, saying it was because they didn't have the time to help her eat. When she refused, they tried to "go over her head" and asked her attendant for permission to insert a G-tube. Fortunately, Cookie had a decent attendant who supported Cookie's refusal.

I then told the people at my table about a good experience I had the last time I was at a hospital to get a piece of meat dislodged from my throat. It was at Mount Sinai Hospital, and they had no trouble whatsoever catching onto the way I communicated. They signed me in, got me a cubicle in Emergency, and told me I could stay in my wheelchair for as long as possible if it was more comfortable for me. And, when it came to the time of the procedure, they understood it was difficult for me to sign the consent form while I was lying down, so they let me do a verbal contract.

The people at our table were really nice and seemed to respect what Lenny and I had to say. I told them that a lot of times it just takes common sense to communicate with people with communication disabilities, and Lenny said that it also took human decency and a willingness not to be anti-ableiistic.

How true, how true.....

(More on this topic later.)

Where do I begin?

2008-10-25T16:47:00.000-07:00

It has been an... interesting week, to say the least.

I'm not sure where to start. So many times during the past week I was going to start writing about something of interest, but then something else happened and then I'd think, hey, that sounds interesting too, maybe I'll write about that instead.

Where do I begin? I've begun this blog a thousand times in my head. Both good and bad things have happened to me this week. I won't say which weighs on my mind more, good or bad - you can guess for yourself!

Well, first, I did a portrait of my good friend Nora for her birthday. Happy birthday, Nora! Yay, Nora! Yay, art! I love it when my artwork pleases someone and makes a difference in their lives.

On Wednesday morning, Lenny and I went to speak to a class at the YMCA Academy. The kids were all very inquisitive and great!

I spoke about what it's like to have a disability in Ontario, Canada. When you're on ODSP, I explained, you're trapped forever in poverty with no hope of escape. You only receive a small monthly amount, and then, if you get anything extra from other sources, which is rare, it's counted against you the following month. So, you can never get ahead, let alone choose a better place to live.

I also told the class how Direct Funding works, how only 700 people with disabilities in Ontario can receive this specialized funding. Despite the fact that most 24 hour attendant services are shown to be abusive (this is why I got out of them!) and that thousands of people are on the waiting list for Direct Funding so that they can choose and hire their own personal assistants, the Ministry of Health has put a cap securely on this type of funding. Seven hundred people in Ontario, and that's all. Unless someone dies or goes off the program, no one else can get Direct Funding.

Like I said, the kids were very inquisitive, and they asked what they could to do to help me, and people like me. I suggested that they write to the Ministry of Health and to their Member of Parliament outlining the aforementioned problems. I also asked them to spread this information amongst their families and peers. Ignorance, I said to them, is our biggest problen.

I felt good about talking to the class. It was a small but positive step in the quest for better services for people with disabilities.

I also felt good when I received an email this past week for an order of my note cards. Hell, I felt awesome! The guy said that he was from Australia and that he wanted to buy $2,000 worth of cards from me. I didn't think that this sounded too suspicious - I mean, people are supposed to find my website and buy my artwork, aren't they? I thought that maybe he owned several stores in Australia, which could explain the large order.

I was so good, paying close attention to detail so that my customer would be happy and satisfied. I counted my cards to see if I had enough for the order, I went to the postoffice to find out exactly how much it would cost to ship the cards, I sent him a detailed invoice and directed him to my Paypal account.

The beginning of financial independence was within my sights, and I was so incredibly happy! And then, it all came down like a house of cards. It was a scam - a nasty, mean-spirited scam! I knew it as soon as he asked me to pay for the shipping. And then, Rob looked up scams like this, and there was this guy's name, big as life and twice as ugly!

What's wrong with people?????????? Here I am trying to make the world a better place, and there's jerks like this guy trying to scam people out of their hard earned money! Jeez!

As Roy from The IT Crowd would say, "People: what a bunch of bastards!"

Best Laid Plans ...........

2008-10-12T20:34:00.000-07:00

So, tonight was supposed to be Aaron's big party before he has his operation to remove the tumours from his bladder. Yes, well, it didn't go exactly as planned. I'm upset about it, but not too upset because I'm a bit drunk and a bit high on pot chocolate, and this numbs the pain and the fury.

On Wednesday, with Lenny's assistance, I called the administrator of my building and asked if I could rent the common room for Sunday (today) for Aaron's party. She said sure, no problem, she'd tentatively book the room for me. I'd have to pay $25.00 for the rent on the room, she said, and $50.00 for insurance (just in case I left the room in a mess), and I reluctantly said yes. She then said that I needed to fill out a form too. So, on Thursday, I went to the administration office with my cheques and asked for the form I was supposed to fill out. All I got were blank stares. The head person was out to lunch, and they didn't think there was any form for rental of the common room. I knew better than they, and so, came back on Friday and filled out the form.

I thought everything was set. I bought chips, dip, candy and pop for the party. Many, many invitations were sent out. I was prepared, I was on the ball!

Unfortunately, the management of this building wasn't.

At 6:30pm we went to look for the superintendant to open the room. I had booked the room for 7pm, but we needed to set up. The superintendant is new, so I didn't have her phone number, but somebody told me which apartment she lives in. We went to her apartment and knocked on the door, but there was no response.

Concerned about our guests arriving and not knowing where to go, we went back down to the lobby, let people in and explained the situation. We all sat in the lobby and Lenny and I kept checking the locked door. Then after 7pm, we went back upstairs to try again to find the super. Unfortunately we realized our mistake, we had been knocking on the wrong door. We saw a note posted to a different apartment door, saying that the super was off for the day. However, the note directed us to the apartment of the assistant superintendant. We phoned the "emergency contact" numbers listed for the assistant super, but there was no response at either number, nor was there any response at his door. We left multiple messages (I wonder what would happen if there was a real emergency) but he never answered or returned our calls.

Frustrated beyond belief, we took the party to my apartment, but nobody could stand the heat which we have no ability to control. Once they shut off the air conditioning, this building heats up like an oven. We went to a nearby bar, leaving signs to direct any party guests that way and called the building administration "ratfaces".

At the bar, we had a good time and I think that Aaron enjoyed himself. Still, I feel angry about the events of the evening. I want my money back and justice done!

Changes, Both Good and Bad

2008-10-06T21:14:00.000-07:00

So, Rob got his new sofa and I got a whole new apartment... sort of. It took 4 days of rearranging of furniture, cleaning and mopping, and throwing out junk, but now it looks spectacular! It looks the neatest that it's probably ever been. I'm so happy!

That was a good change in my life. There were a couple of not-so-good changes that happened at the St Lawrence Market this past weekend. Minor things, sure, but they still annoyed me just the same.

First of all, they had removed all of the tables and chairs which used to be across from my cart. People used to sit and eat there and chat with me. It was nice talking with people. Sometimes they became regulars, and because of this, this even produced sales for the surrounding vendors and me. Now, the New Zealand vendors have expanded their domain and put 4 large glass cases showcasing their jewellery, replacing the tables and chairs. Disappointing, sure, but not a huge deal....

And then, there's a new vendor who sits on my left side. She says she knows me and I vaguely recollect chatting with her maybe one year ago. Well anyway, I sure won't forget her now. She was big, loud and pushy. She came in way after the vendors to my right and I had set up and started telling us we had to move over because she did not have enough space. Before we had time to digest this request, she promply grabbed my cart and moved it herself. Two things will automatically piss me off, one, taking my food without asking, and two, touching my stuff without asking. I am generous and reasonable, except for when this happens.

Well anyway, this topic is called "Changes, Both Good and Bad," so I have more good changes too. I've heard through the grapevine that Tobias House is finally reprimanding and punishing its employees for their inappropriate behavior. Its employees are being suspended and its clients are finally being listened to. Although I would never consider going back to Tobias House for its services (or to any other attendant service for that matter) because I love, love, love having Direct Funding and being able to choose who works for me, I am overjoyed with this new development and hopefully other attendant services will follow suit.

Another positive development has been the anti-poverty group formed recently by ARCH and Studies in Disabilities. I've been to 3 meetings so far that they've hosted, and they seem to have a lot of ideas and enthusiasm. Admittedly, I was rather disappointed that more people with disabilities didn't come to the latter 2 meetings and that the goal this group has set to "End Poverty" is 2010. In my humble opinion, 2010 is way too far in the future! ODSP and Welfare need to be raised to a living wage now not in 2 years! People need more money to pay their rent and buy nutritious food.

Yes, I'm frustrated... but it is a start, I suppose.

PawsWay

2008-09-30T16:36:00.000-07:00

Ok, so I'm a week late - but PawsWay (the Art of the Pet Event) was fantastic!

The other artists were both friendly and suppor- tive. And, the people who worked at PawsWay were amiable and wonderfuly helpful. If Curtis or Motria left for a personal break or to get me some food, the workers would immediately step in and help me sell my work. Amazing!

There were dogs all over the place. Both the artists and customers were allowed to bring any pets they had. PawsWay, you see, is also a teaching centre where people can learn how to take care of their furry loved ones.

I did very well over that weekend. Lots of sales, much praise for my artwork, a few possible commissions. All in all, a very possitive experience!

Plus, the workers said that PawsWay would have this event every 4 months and that they would promote both it and all of the artists. They asked me if I'd like to come back, and I replied with a resounding yes!

Artwork

2008-09-23T23:06:00.000-07:00

For those who are interested, this coming weekend I'll be at:

The ART OF THE PET' EXHIBIT AND MARKETPLACE
PawsWay 245 Queen's Quay West, North Building

Date: Saturday, September 27th and Sunday, September 28th

Time: Noon - 6pm (both days)

And, to pique your curiosity, here are just a few of my artwork of adorable pets...

I hope to see you there!

Directions:

TTC:
From Union Station: Take either the 509 Exhibition or 510 Spadina Streetcar west from inside Union Station (exit subway platform and look for streetcar signage)

Both the 509 and 510 Streetcars stop directly in front of Harbourfront Centre. From Spadina Station: Take the 510 Streetcar south and get off at the Rees Street stop on Queen's Quay.

Artwork

2008-09-22T21:26:00.000-07:00

"Santa Teddybear" 14x16, unframed, $150.00
"Holy!" 16x20, unframed, $200.00
"Houses on Soho Square" 8x10, unframed, $50.00
"Henry VII and His Jewels" 8x10, unframed, $50.00

Artwork

2008-09-22T20:46:00.001-07:00

"Hershey on New Kitchen Chair" 16x20, unframed, $250.00
"Painting in the Nude is Like the Freedom of the Sea" 16x20, unframed, $250.00
"Still Things to do at 82" 18x24, unframed, $350.00

Artwork

2008-09-22T17:49:00.000-07:00

Like I said in my last entry, I am the definition of a "starving artist" personified.

So, I thought I'd put up a few of my paintings here and see what happens. Yes, it's a shameful show of self promotion, but what the hell, I've never been accused of being a shrinking violet!

"Artist In Complative Mood" 16x20, unframed, $250.00
"Grumpy Cat" 5x7, framed. $30.00
"Male Torso" 5x7, framed. $30.00

Split in Two

2008-09-20T16:07:00.000-07:00

Do you ever have one of those days... er, weeks... er, months? Times when you feel like you're on an emotional rollercoaster?

September has been a shitty month. There's no polite way to say it. September has been a terribly shitty month!

Upon my return from England, I heard about my dear friend Aaron having cancer, which is so unfair! Why must such a terrible thing happen to such a sweet, unassuming guy?

I had two of my employees quit on me, and others who wanted their shifts switched around. (I understand that people's lives change, and dealing with this type of thing is just part of having Direct Funding and being able to choose who works for me - but, god, sometimes I feel like in scheduling hell!)

Rob's easy chair is falling apart. The front left wheel
on my commode still hasn't been repaired yet. In fact, there hasn't been any OT person visiting yet to do an assessment of the problem. It's kind of a race now to see if Rob will get a new easy chair before I get my new commode. My bet is firmly on Rob.

My mother very, very kindly has offered to buy us a new easy chair. My mother is a wonderful woman!

If I could afford it, I'd buy Rob a chair myself. Hell, if I could afford it, I'd simply buy myself a new commode!

But I can't. Sales at the St. Lawrence Market has been absolutely dismal. Look up "starving artist" in the encyclopedia and you will, most certainly, see a picture of me.

Next weekend, I'm going to be a vendor at Queens Quay Pet Show, which I'm very hopeful about! It replaces my hope about the consulting job at Bloorview Kids Rehab. I recently heard that this project doesn't start until Spring '09!

On Thursday Lenny and I went to a workshop called "A Call to Action to End Poverty for People with Disabilities in Ontario: Imagine an Ontario where no one ever went hungry and where everyone was treated with dignity and respect!" It was hosted by ARCH Disability Law Centre and Disability Studies in Toronto.

The email they sent me as an invitation to the workshop intrigued me: "The Ontario Government has announced that it will develop a poverty reduction strategy by the end of 2008. Public consultations are being held across Ontario. We want to make sure that people with disabilities who are living in poverty get consulted and are actively involved in efforts to end poverty in Ontario."

Was the government finally going to do something about poverty, especially poverty in relation to people with disabilities? I was reservedly hopeful.

There were about 25 there, and we were all saying how insane it was for the government to expect people on Welfare to rent an apartment for $350.0o. People with disabilities, like me, who receive the meagre ODSP monthly pension were all saying the same things: 1) we should get an increase in funds so that we're not living below the poverty line, 2) ODSP should not penalize people for receiving monetary funds from friends and family (such a practise traps us in poverty forever), and 3) we should not have our meagre funds scrutinized every year by ODSP; it's a truly humiliating experience! And, if we send in our taxes every year, why must ODSP scrutinize the little money we have?

We were asked what would we do if we didn't live in poverty. Right away, I said I'd get out of subsidized housing and get a bigger, nicer place. (I hate the fact that I have limited choice of where I can live!) Other people said that more money would mean being able to buy healthy food for their families, or to take a yearly vacation, or pay for childcare. Nobody suggested anything outrageous like caviar or diamonnd rings. We all just wanted to have a better life and live with some dignity.

The workshop made me feel good - empowered! And yet, I doubted whether anything would happen... within the near future anyway. And, with the election coming up, I'm even more doubtful. When elections come up, people with disabilities (and other minorities) are forgotten.

And yet, I have to have hope. I have to keep fighting, fighting to have my voice heard and change things for the better.

Well, I feel better now. Pouring my guts out in prose always helps. It's very theraputic for me. I'm neither sad nor overjoyed, just resigned and determined.

Freaky Friday

2008-09-12T12:58:00.000-07:00

What a day! We had water pouring down from the apartment above us into our toilet. (We've been complaining about this happening for years!) That was
just the beginning.

Rob's easy-chair broke. It has a HUGE hole in it!
I almost got run over by a car. The driver wasn't looking where he was going when he suddenly accelerated into the intersection, missing me only by a foot. The woman who sat next to the driver gave him a hefty smack, which made me smile.
And, sadly, I heard that my dear friend Aaron, who only recently found out he has cancer, just found out that he has more tumors in his bladder. Aaron's the sweetest, dearest guy - Where's the justice in that?! I keep thinking about him, worrying about him, hoping that he'll be all right.

I had one more trouble today, although it sounds pretty petty in comparison with the last thing I said ....

The wheel on my commode/shower chair is very dangerously close to coming off. As you can imagine, this chair is very important to my sanitary needs, so I was kind of in panic mode. I had Motria call HME (Home Medical Equipment) first to ask if they could either fix the wheel or give me a whole new chair.

Unfortunately, they told me that I should call ODSP first to get authorization from them before anything work could be done. So, Motria and I called ODSP, and Motria spoke for me. The woman at the ODSP office was impossible - and ignorant! She kept asking if she could speak to me, and Motria kept trying to explain that I was non-speaking, it was part of my disability. The woman still didn't get it and actually asked Motria, in a low, whispering voice, "Is she deaf and dumb?" Deaf and dumb? How offensive! And even more so when that woman is supposed to be working for people with disabilities.

I have more to say - a lot more - on the subject of ODSP and all the complications that arise when you try to get something important to you fixed or replaced. Unfortunately, I have to go to bed. I have to get up at 5:30 am to go to the St. Lawrence Market.

Home Again

2008-09-09T20:19:00.000-07:00

I'm back, folks! Back in good ol' Toronto, and ready to take on the world again.

Admittedly, I was incredibly depressed when I returned home. I had felt connected to England (and I still do!) and yearned to return there. Why do I feel this way? Because of my heritage, I've always felt more British than Canadian. And, because London was more accessible than Toronto, and their citizens seemed more respectful and knowledgeable in regards to disability issues, I inwardly groaned at the prospect of coming back here and fighting the good fight again for change. Don't get me wrong. I love a good fight, especially when I know it's for a good cause, but god damn it, sometimes it feels like I'm banging my head against a wall. Sometimes I feel like I'm pushing against an immoveable boulder.

Yes, at first I was depressed upon my return. Now, I feel like I'm back on track again. Painting, selling my artwork at the St. Lawrence Market, visiting with my mother, drinking Iced Caps. Usual stuff, sure, but exciting things are happening, too! Next week I'm going to a workshop for people with disabilities on how to end poverty. (Many people with disabilities who receive the ODSP government pension live below the poverty line.) I've been asked to act as a consultant for a project that Bloorview Kids Rehab is doing. I can't talk about specifics, but it involves children who use AAC. And, there's a slight chance that I might go to Berlin next year through a disabled activist exchange program.

Oh yes, and all week I've been working hard on updating my Cafepress store. Now, not only can you buy prints and cards with my artwork on them, you can also get notebooks, keepsake boxes, clocks, cushions, teddybears, ceramic coffee mugs etc. If you're interested, check it out! http://www.cafepress.com/adnaa

My Days in England

2008-08-24T13:34:00.000-07:00

1. Having "Camp Gaydar" in our front yard.
2. Eating my toast with Utterly Butterly on it.
3. Hearing people voice their opinions passionately at Speakers' Corner at High Park.
4. Absorbing the culture, beauty and history of the country by going on the boat tour of the
Thames; visiting Hampton Court and the Tower of London; seeing the Royal Pavillion in
Brighton.
5. Going to Cambridge Pub and having ale and fish & chips. My dad may or may not have liked
ale (I'm not sure), but he ate fish & chips every Saturday for 48 years while he was married to
my mom. Eating fish & chips with vinegar and salt & pepper like he used to do made me happily
nostalgic.
6. Sitting in the park with people on old-fashioned wooden lawn chairs.
7. Laughing with Sarah & Rob, Catherine & Leon, about the most ridiculous things.
8. The fact that all of the galleries and museums are free, relying only on donations to keep them
running. And that there are so many bookstores in the neighbourhood. Such a country that
focusses upon knowledge and culture can't be all bad.
9. Aero mint Bubbles.
10. "Mind the Gap" knickers.

2008-08-24T13:31:00.000-07:00

What I loved and will miss about England (Part 2)

My Days in England

2008-08-24T03:15:00.001-07:00

4. I'll sincerely miss the transportation system. The people who run the trains were so friendly, respectful and helpful. At every stop there was a person waiting for me with a ramp, and they told us that it was against the law for a person with a disability to not be accommodated.

All buses were accessible and free for both my attendant and I. And, the bus driver did not have to get out to pull out the ramp, he just pushed a button to release it.

And there is no Wheel Trans, you just hop in a cab because most of them were accessible. And the cab drivers were far more respectful than the drivers Wheel Trans hires.

Once I get back to Toronto I am going to lobby for more accessible transportation. There is no reason why we can't get the same kinds of accessibility--and respect!

My Days in England

2008-08-23T15:13:00.000-07:00

3. Seeing all (well, most) of the sights I wanted to see. Hampton Court, Tower of London, Tower Bridge, London Eye, Themes Boat Tour, Brighton Boardwalk, the Royal Pavillion. I'm exhausted but overjoyed.

2008-08-23T15:06:00.000-07:00

My Days in England

2008-08-23T12:23:00.000-07:00

2. Having a fellow artist like Sarah made this trip lots of fun!

We were interested in similar things, like going to galleries and doing our own artwork in parks and in our flat.

(By the way, I thought it was fantastic that the statue featured within the main entrance of National Gallery was of a pair of lovers, both of whom
had disabilities.)

My Days in England

2008-08-23T12:00:00.000-07:00

1. Being with my darling Rob and getting to spend a lot more quality time with him.

2008-08-23T11:56:00.000-07:00

What I liked and will miss about England... (Part One)

My Days in England

2008-08-20T11:43:00.000-07:00

Today FREEDOM! The lift is fixed!!!!!!!!!!! I went out in my own power wheelchair and painted in Soho Park all afternoon.

My Days in England

2008-08-20T10:26:00.000-07:00

Tuesday Sarah & I went with Catherine & Leon to Brighton. It was chilly, dull, and windy, but it was definitely one of the most fun days Sarah & I have had so far. Being with Catherine & Leon is kind of like being with a husband and wife comedy team. They kept us in stitches all afternoon and evening.

The four of us walked on the boardwalk to the pier. Catherine, Sarah & I bought a hairband each to keep the wild wind from blowing our hair. And, I also bought a ring and a necklace as souveniers.

We saw the Royal Pavillion, which was really beautiful, and then we had dinner at a restaurant called Pinocchio's. That was kind of cool because as a kid Pinocchio was my favourite story of all time.

All in all, a brilliant day - except (duh-duh-DUH!) Sarah and I came within centimeters of dying in a taxicab going back to our flat. There was traffic and our driver was trying to get us home quick, but he almost cut off another cab. Then the other driver got very pissed off and started chasing us, it was like something out of a movie. They stopped, and the other driver hurled insults at our driver. Fortunately nothing came out of it, and Sarah and I got back alive.

My Days in England

2008-08-20T10:00:00.000-07:00

Monday Sarah & I went to see the Tower of London. It was cool, man! I could feel all the ghosts, including poor Anne Boleyn.

My Days in England

2008-08-18T05:34:00.000-07:00

My Days in England

2008-08-18T03:31:00.000-07:00

Despite this nasty manual wheelchair, I've still managed to get out and have fun! Sarah and I have been painting in Soho Square park, and went to two art galleries. Yesterday Rob joined us and we went to Hyde Park, then we had dinner in a quaint little Italian restaurant.

2008-08-18T03:05:00.000-07:00

There is no roll-in show here, but I need to keep clean or my roommates will think, "throw her out!" So, I put my commode chair in the bath tub and it worked out great! See, even when you're told it is not accessible it can still be made accessible.

2008-08-18T03:00:00.000-07:00

And now for some nudity....

My Days in England

2008-08-15T07:41:00.000-07:00

Ok, so maybe England isn't perfect after all.

Let me explain. First. there was the problem of not being able to charge my power wheelchair for the first 3 days due to the fact that there's a different voltage system from North America compared to that of Europe. Thankfully, the problem got solved when Sarah bought a Universal Charger from a wheelchair store. Cheers, Sarah!

I thought that was the end of the problems, but no such luck. Rob had gone out in the morning to the store and came back with some news: the lift was broken and they (the people who run the building) didn't think it would be fixed much before next Wednesday. Wednesday, I thought - trapped like a rat for 6 days! Eek!

I became frustrated, panicstricken, and depressed all in one shot. All my life, I had dreamed of coming to England and discovering my heritage. Now, I was faced with being imprisoned within the flat's walls, missing everything I had been yearning to see for years!

But, what upset me the most was the attitude of the people who run this building. When Sarah called down, they gave no sign at all of any empathy for our predicament. They seemed only to care about covering their asses, saying: "Well, we didn't really want to rent to Ms. Abbott, but Mr. Marr talked us into it. We're not actually 'wheelchair accessible'."

That comment drove me nuts! I've been living here since Monday, and, although the lift and doorways are kind of snug, it is definitely do-able. In my humble opinion, it is accessible. In fact, compared to my home it is much more spacious. In my humble opinion, my apartment is even less accessible.

Well, anyway, since I began this entry, there have been good things happening! I've rented a manual wheelchair, which will be far easier to leave the flat in, and the people who run the building have agreed to reimburse me for it. Yahoo!

My Days in England

2008-08-14T08:36:00.000-07:00

So, Hampton Court won out. It was great too! I got to feel Henry the 8th's presence and it was so cool when four of the staff sang Happy Birthday to me! More later, Sarah and I are going out to paint the the town...literally!

My Days in England

2008-08-11T10:36:00.000-07:00

Ever since I can remember, I've wanted to go to England. Why, you may ask? Well, for one, all four of my great grand parents came to Canada from England, and that fact always made me curious about the land that they left. Also, my mom told me the story about Henry the 8th and his six wives, and as a kid i thought it was pretty cool. I mean, how horrendous, but still somehow cool. Well, anyway, this instilled in me a curiosity about the history of England.

I am in England right now. I'm so happy! I'm here with my dear husband Rob and my good friend Sarah, and we're all here to celebrate my 50th birthday tomorrow. Woooohooooo, I'm so happy! I finally got here. Already it feels like I belong here.

We're staying at a fantastic flat in Soho. My good friends Catherine and Leon recommended it to me and today they helped us get settled in. In fact they took me on a bit of a tour of the town. I'm not sure what we're going to end up doing for my birthday tomorrow. Brighton or Hampton Court -- flip a coin!

Memories of Montreal

2008-08-09T19:34:00.000-07:00

My time in Montreal was both good and bad. I mean, partying every night with Lenny, Nora, Kim Aaron & Sarah was great and fun! And, finding out that I had inspired a young boy named Liam, who, like me, had CP and was an AAC User, to become an artist felt fantastic!

His mother explained to me that Liam had always liked to paint but decided to quit because he didn't feel that his work was as good as other kids'. However, when Liam saw me doing a painting demonstration, 2 years ago at the ICE (Independence Community Empowerment) conference, it instilled in him a desire to try painting again. In fact, since then, Liam paints every day, sometimes for hours at a time!

Isn't that a fantastic story?! I feel so overwhelmed that I, little ol' Anne Abbott, actually inspired somebody to stretch their artistic inclinations.

And that, my dear readers leads me to compare this wonderful story to the not so great stuff that happened during the conference.

Why is it that in recent months I've gone to 2 different conferences, both focusing on empowering people with disabilities and providing them with a better quality of life - and yet, the people running these conferences seem to be doing everything in their power to dissuade people with disabilities from coming and having their say.

I was fortunate. My hotel, transportation, and registration were all paid for, and I got a small honourarium for being part of 2 presentations. However, my friend Aaron, although he had friends who paid for his hotel and transportation, didn't have any funding to pay for the conference registration fees. He was told it would be $120.00 for the whole 6 days, but then he got there and he was told no, no, it's $180.00 a day! What person with a disability, who lives on the meagre amount that we receive from ODSP each month, could afford $180.00 a day? It's ridiculous!

And then, Aaron got a ticket to the "President's Reception", a special event with drinks, hors deurvs, and mingling. Great, right? Sure, except that Aaron needed his attendant (Sarah) to go in with him and help him eat. They said, no, no, your attendant needs to pay $60.00 to get into the reception. They seemed very firm upon this point, until Lenny & I yelled out how discriminating it was! Trains and buses let attendants ride for free or at reduced cost, because they know the importance of an attendant to a person with a disability. Recently, in Canada, it became law that attendants could fly free, on domestic flights, so the person with a disability wouldn't have the extra burden of paying for an extra ticket.

Yes, I know, conferences are now saying that it's difficult, financially, to do things like they used to. I say nonsense! Re-think your strageties! Nothing is set in stone. Maybe choose cheaper hotels, ask the vendors to pay a slightly higher price to show their wares, have a sliding scale for people on ODSP or little money.

My point is, people with disabilities, about whom these conferences centre around, should be encouraged to participate not discouraged. I want to inspire other people with my art, and I want to get inspired by them. This is what conferences should be: an exchange of ideas - an accessible exchange of ideas!

Memories of Montreal

2008-08-09T18:55:00.000-07:00

Bonjour! I'm back from my 5-day trip to Montreal. Here's some pics Lenny & I took. (By the way, as you may notice from the pics I finally have my own wheelchair back! Yahoo!)

2008-07-31T21:41:00.000-07:00

And this, after many, many edits, is the finished product for the ISAAC conference:

Hello. My name is Anne Abbott. I’m from Toronto, Ontario. I'm an artist, and I run my own art business called Annie's Dandy Note Cards and Artwork. I'm also president of Speaking Differently, an organization for AAC users. And, I'm married to a wonderful man named Rob, and we have 2 cats named Hershey and Rascal. It's a great pleasure to be here today at such a prodigious conference.

Let me explain that I will be using my laptop to give my presentation, and then my communication board to answer questions. This is because I prefer to use my board as it is easier and faster for me. Lenny, here, will act as my communication assistant.

I was 31 when I first started to think about moving out of my family home. To the average person, it may seem rather odd that I didn’t venture out earlier in my life. But, that’s not unusual for many people with disabilities. The main reason for this is that, in the early 70’s, there were fewer options at that time to support people like me to live independently in the community. Many people with disabilities, especially if they used AAC lived in institutions or group homes and very few lived in their own place with attendants to provide them with the services they needed.

I had been fortunate enough, until this point in my life, to have been able to live with my family. Back then, there had been no support services to assist us. My family, the closest people to me, had known how to assist me with my daily needs and knew how to communicate with me.

Would other people be able to do this? Could I teach them about my own unique preferences myself, even though I was an A, A, C, user?

It seemed a daunting task, but I was certain that I was up to the challenge. It was the late 80's, and I had just made several friends through using chatrooms on bulletinboard systems. Indeed, through this type of communication, I met a wonderful man who became my boyfriend, and later my husband. It was because of this interaction with people outside my family, that I gained some confidence about moving out on my own.

For the most part it was an empowering experience to have that first taste of independence. I learned to go out into the community on my own, with my laptop or low tech board as my communication aid. I shopped for groceries, clothes, essentials, and did my own banking for the first time in my life. I learned how to teach my attendants what I required from them in order to lead a happy and productive life.

And yet, there were drawbacks and frustrations. Most of the attendants communicated with me with no problem. However there were sone who were unwilling or unable to learn how to communicate with me.

I prepared long, detailed accounts on my laptop of hese types of situations and relayed them to my service manager. I wrote page after page, detailing situations where I felt my rights and services were compromised because of the staff’s inability or willingness to communicate with me. Nothing was ever resolved.

In 1990’s I moved to another apartment which had attendant services. It was OK at first, but then the same problems with communication arose. I felt powerless. I asked the managers to give me staff who understood how to communicate with me and who allowed me the time I needed to tell them what I wanted. They told me I would simply have to deal with whoever was scheduled to work me that day.

This was unacceptable to me, and In the 2000’s, I decided to fight back. I took my complaint to the press. I told the public about the lack of control and power that I and other people experienced within the attendant services.

I then applied for and got individual funding so that I could hire my own employees to assist me with my daily needs and routines. I received direct funding 2 years ago and I have never been so happy in all my life. Finally I can choose my own people and train them myself.

I love my mom, but even at age 50 I'm still having problems with her understanding my needs. Parents are great, they can be your best advocates or they can be way overprotective.

On a daily basis, we need to communicate to our attendants about what we want to wear, how to prepare our meals, how to do our hair, clean our apartments, charge our wheelchairs, put away our groceries, do our laundry, feed the cat, and make our beds. We also have to specify about important things, like, how to cut up our food small enough so that we don't choke, and how gentle or hard to wash our bodies, or brush our teeth.

We may have to ask our attendants to assist us in making phone calls. For example, I often prepare messages beforehand, if it's a call to have my wheelchair repaired, make a dentist appointment, or, order a pizza. For longer, more involved, phone calls with family and friends, I simply wing it and my employees translate for me.

Because I have individualized funding, I have to hire my own people to work for me. In order for me to do this, I have the employees I already have, act as communication assistants and help me to interview and train the newer people. My employees also assist me in doing the payroll, calling my bookkeeper, talking to the bank manager. And, if one employee gets ill or requests a day or two off, they will assist me in calling other employees to fill the shifts. My employees are very respectful in regards to knowing my preferences and following them. They know that they don't need to assist me with communication if I'm having a face to face conversation with someone I know very well. However, my employees also know that if I glance in their direction it means I need help.

Even when I was growing up, I wanted things done a certain way. Everybody has preferences, and I was no different. Unfortunately, sometimes the things that I asked for were different than what I received. It was partly my fault. A sensitive child, I didn't like it when people got impatient with me and snapped at me when I asked for something. And, so, I shied away from correcting people or even speaking out.

However, I learned that just as people could read my body language, I could read theirs as well. When my mother or father seemed unusually stressed out and distracted, I knew to bide my time until there was a more appropriate moment to talk to them. I learned how to ask for things politely and to explain what I needed with great patience. Somehow along the way, I gained the confidence and know how to speak out for myself and correct people when they did something that I didn't think was right.

Children need to learn that it’s Ok to speak up and not to be afraid to ask people for things. It is extremely important that children are made to feel that they can speak up and what they have to say is valuable.

The relationship that exists between an AAC user and an attendant must be built upon trust, respect, and understanding. If there are none of these things on a mutual basis, then the whole thing falls apart. Another essential part of this relationship is to have an abundance of patience with each other.

If an AAC user faces problems with an attendant, it is very important to deal with the situation right away and to give feedback to the person. If the person does something wrong it is going to drive you nuts, and if you don't speak up it will end up festering inside of you. I realize that some people can feel intimidated or resigned to the way the system works, but it will give you a sense of being in control and empowerment if you voice your concerns.

As well as violating our rights, it is also a safety issue. My friend, Aaron can’t tell his attendant to cut up his food because the attendant doesn’t know how he uses his board. Aaron is afraid of choking, so he often skips meals to avoid this danger.

The worst thing that ever happened to me within an on-site attendant service project was when I was asking my attendant to give my communication board. I was trying desperately to tell her that I had shampoo in my eye and needed her assistance to get it out. The attendant just couldn't understand what I was saying, though, and took away my communication board. I, infuriated by this action, kept insisting that she give it back to me. And then, incredibly, she left me, cold and wet in the shower, and went to got the male manager. He wasn't impressed, and I was shaking with fury and humiliation! How could that attendant not understand that when she took away my communication board it was as if she were putting a gag in my mouth. And, didn't she have any empathy for me at all? How could she not understand that it might be humiliating for me to have the manager come into my home and see me naked? Or, did the attendant simply not think that I have the same feelings as anyone else? I don't know. But, I have never, nor will I ever, forget that day, or, how that attendant made me feel.

One evening I went out to a party and I ended up coming home very late, at maybe 3am. I went to the attendant care office to see if anybody could assist me in going to bed and they actually yelled at me, saying I woke them up.

As I mentioned earlier, problems emerge when a staff person cannot, or will not, communicate with us.

In Ontario, attendants are still not trained in how to communicate and work with people who use AAC. This needs to change.

This is a DVD and booklet for and by people who use AAC about our safety. It shows of us who use AAC and we give advice to others who use AAC and their support networks. It’s available from the ACCPC website and we also have some here for sale at ISAAC.

Not having a communication assistant can be extremely frustrating! The general public does not know how to communicate with me. They think that because I can't speak, I also can't think.. Because of this, they don't speak to me or they talk to me as if I am a child.

It’s been a pleasure talking with you today. I hope that by sharing my personal experiences, I have given you not only a sense of the challenges that can face young people when they leave home and start to live independently, but also a sense of hope and excitement for the future.

1st Draft

2008-07-31T21:27:00.000-07:00

I'm doing a presentation in Montreal for the ISAAC conference on Sunday. This was my 1st draft:

Hello. My name is Anne Abbott. I’m from Toronto, Ontario. I’m very pleased to be here today at such a prodigious conference.

First, let me explain that I will be using my laptop to give my presentation and then my communication board to answer questions. This is because I prefer to use my board as it easier and faster for me. Lenny, here will act as my communication assistant.

I was 31 when I first started to think about moving out of my family home. To the average person, it may seem rather odd that I didn’t venture out earlier in my life. But, that’s not unusual for many people with disabilities. The main reason for this is that, in the early 70’s, there were fewer options at that time to support people like me to live independently in the community. Many people with disabilities, especially if they used AAC, lived in institutions or group homes and very few lived in their own place with attendants to provide them with the services they needed.

Would other people be able to do this? Could I teach them about my own unique preferences myself, even though I was an AAC user?

And yet, there were drawbacks and frustrations. Most of the attendants communicated with me with no problem. However there were some who were unwilling or unable to learn how to communicate with me.

I prepared long, detailed accounts on my laptop of these types of situations and relayed them to my service manager. I wrote page after page, detailing situations where I felt my rights and services were compromised because of the staff’s inability or willingness to communicate with me. Nothing was ever resolved.

I then applied for and got individual funding so that I could hire my own employees to assist me with my daily needs and routines. I received Direct Funding 2 years ago and I have never been so happy in all my life. Finally I can choose my own people and train them myself.

On a daily basis, I need to communicate to my employees about what I want to wear, how to prepare my meals, and how to do my hair. I also have to specify about important things, like, how to cut up my food small enough so that I don't choke, and how gentle or hard to wash my body, or brush my teeth.

Many, many times over the span of a week, I have my employees assist me in making phone calls. Sometimes we prepare messages beforehand, if it's a call to have my wheelchair repaired, make a dentist appointment, or, order a pizza. For longer, more involved, phone calls with family and friends, I simply wing it and my employees translate for me.

There are times when I use my speaker phone and some times I don't, depending upon the circumstance and the person I'm calling. My employees are very respectful in regards to knowing my preferences and following them. They know that they don't need to assist me with communication if I'm having a face to face conversation with someone I know very well. However, my employees also know that if I glance in their direction it means I need help.

Because I have individualized funding, I have to hire my own people to work for me. In order for me to do do this, I have the employees I already have act as communication assistants and help me to interview and train the newer people. My employees also assist me in doing the payroll, calling my bookkeeper, talking to the bank manager. And, if one employee gets ill or requests a day or two off, they will assist me in calling other employees to fill the shifts.

The relationship that exists between an AAC, user and an attendant must be built upon trust, respect, and understanding. If there are none of these things on a mutual basis, then the whole thing falls apart. Another essential part of this relationship is to have an abundance of patience with each other.

If an AAC, user faces problems with an attendant, it is very important to deal with the situation right away and to give feedback to the person. If the person does something wrong it is going to drive you nuts, and if you don't speak up it will end up festering inside of you. I realize that some people can feel intimidated or resigned to the way the system works, but it will give you a sense of being in control and empowerment if you voice your concerns.

He wasn't impressed, and I was shaking with fury and humiliation! How could that attendant not understand that when she took away my communication board it was as if she were putting a gag in my mouth. And, didn't she have any empathy for me at all? How could she not understand that I might be humiliating for me to have the manager come into my home and see me naked? Or, did the attendant simply not think that I have the same feelings as anyone else? I don't know. But, I have never, nor will I ever, forgotten that day, or, how that attendant made me feel.

As I mentioned earlier, problems emerge when a staff person cannot or will not communicate with us.

In Ontario, attendants are still not trained in how to communicate and work with people who use AAC. This needs to change.

As well as violating our rights – it is a safety issue. My friend, Aaron can’t tell his attendant to cut up his food because the attendant doesn’t know he uses his board. Aaron is afraid of choking.

I assisted ACCPC with the production of a training video for attendants. And, on the video, I told a story about an attendant who insulted my legs, saying that they were "skinny, little, chicken legs"!

That comment hurt me. Whether she meant it only as a joke or as an insult, it hurt me. That attendant had crossed the line, her comment was inappropriate, and I told her so.

It can be so hard to tell someone that they have, indeed, crossed a line. Indeed, it's difficult to take the matter to the next level, to the manager, because of the fear of repercussions. There's always the fear that the attendant may take it out on you somehow, or that you won't believed by management.

I remember how one time I wrote a complaint about one of the attendants who repeatedly fell asleep during the time she was serving me breakfast. When the attendant learned that I had reported her, she told me that she cried all night . She tried to make me feel guilty, but it didn't work because I knew it was my right to talk to management when things don't seem right.

Sometimes people just don’t listen or take us seriously. As I mentioned earlier, I took my complaint to the press and that’s when things started to happen for me. It’s sad that it takes this to get some things to change. I’ve learned about the power of the press and what it can do for us.

As an A, A, C, user, I am always very aware of the fact that it's not as easy for us to get away from a scary situation or just yell out for help. I often wonder what would happen if I ever got hit by a car and there was nobody around who knew how I communicate. What would happen to me?

I remember, several years ago, it was the middle of winter and I was driving my wheelchair to a friend's house. Ten feet from my destination, my wheelchair got stuck in the snow. Cars were passing by, but I couldn't yell out for help. It was bitterly cold, and I was actually scared that I would freeze to death. I think I would have been happy if I had somebody with me like a communication assistant.