Thursday, January 22, 2009
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?
Monday, January 12, 2009
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?"
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.
Sunday, January 11, 2009
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!
Sunday, January 4, 2009
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....