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

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

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

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

This was how gay activism was born.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unfortunately, this was one of those times.

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

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

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

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

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

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

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

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

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

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