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.



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

York University Speech

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

This is my speech:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for having me here.

People Who Get it, and Those Who Don't

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

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

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

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

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

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

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

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


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

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

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

Holy Grail of Funding

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

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

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

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

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

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

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

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

Thank you.

Good Commode

Bad Commode

Happiness is

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

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

Will Accept Money to be Talked to Condescendingly

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

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

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

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

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

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

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

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

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

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

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

Such is life ....

Anybody have a video camera?

Supporters

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

Where indeed.

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

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

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

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

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

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

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

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

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

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

Pardon me while I go scream and take another Lorazepam.

Ciao.

Weird Dream

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

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

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

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

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

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

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

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

Happy anniversary, Sweety!

Elevators, Cats, and Commissions

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

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

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

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

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

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

Such is the life of an artist....

The Joyful Holidays (part three)

And thus, this brings me today: Christmas Day.

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

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

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

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

Things started to fall apart from there...

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

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

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

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

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

Just the highlights:

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

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

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

What an clunker of an ending to Christmas!

The Joyful Holidays (part two)

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

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

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

I brought chips, dip, and my sparkling personality.

Everybody was happy!

The Joyful Holidays (part one)

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

I was happy!

What's Up Doc?

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

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

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

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

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

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

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

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

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

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

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

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

How true, how true.....

(More on this topic later.)