Monday, December 14, 2009
Life Goes On
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.
Tuesday, October 20, 2009
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.
Friday, October 2, 2009
A Hell of a Lot to Say
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
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
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.
Sunday, July 12, 2009
So Much to Say, So Little Time.... (Part Two)
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.
Friday, July 10, 2009
So Much to Say, So Little Time.... (Part One)
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!
Thursday, June 18, 2009
Those Who Truly Get It And Those Who ... Suck
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.
Monday, June 15, 2009
Dog Eat Dog at Woof Stock
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.
Monday, April 13, 2009
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!
Saturday, April 4, 2009
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!"
Saturday, March 14, 2009
Memories of My Dad
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.
Wednesday, March 11, 2009
York University Speech
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.
Monday, March 9, 2009
People Who Get it, and Those Who Don't
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
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.
Thursday, February 26, 2009
Holy Grail of Funding
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".
... 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.
Thursday, January 22, 2009
Will Accept Money to be Talked to Condescendingly
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?