Speeches, speeches, speeches!

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

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

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

September 19, 2010

(written over approximately 2 weeks)



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

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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

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.