Boom, like that.

I have been thinking about the past year a lot lately. It was a year that I am happy to leave behind. I gave up my work as an artist for what I felt and continue to feel was for the greater good of all artists with disabilities. But I am now at a point where I realize that I am unwilling to put off my own needs anymore. I chose to give my time to things that I continue to believe in, however, I have lost my energy for those things for now.

July passed by quickly. It wasn't without it's small dramas, but it was summer holidays, the kids were home or in day camps and that kept me busy.

At the end of July my husband had a phone call from a head hunter. There was nothing unusual about that. Was he interested in moving to Ottawa for a company that could really use his skills. He was open to the idea. Three days later he had a phone interview, at the end of which they had booked him a flight for a final interview. He left on a Sunday and returned the next day. I had told one friend what was going on. She was there when he came home. We left the sun and warmth of my backyard deck and went to hear about his trip. 

He played coy. He loves doing that because he knows that he will always get a reaction from me, which invariably will lead us all to laugh. These are the roles that we have adopted to relieve the pressure and it works. My friend asked if she should leave us alone but we have spent so much time together that now we're family. So I said that it was a family discussion and therefore she was included.We three adults sat down in the dining room while my two children and my friends son continued to play with the bliss of ignorance that they still had. I asked my husband how his trip went and what would happen next. His typical abbreviated response was "It's up to you".

It's up to me. The big decision was essentially mine. This meant that he liked what the job had to offer so the only question was, what did I want? Oh sure, put it all on me! This was exciting, we both loved Ottawa, we had been there before we were married. It was still within Canada, which after our venture for a job prospect in Lynchburg, Virginia felt more in line with our own attitudes and what we wanted in an education system for our children-the opportunity to learn a second language while they are still young, continued access to a flawed but free national health system, and the continued exposure to multiculturalism.

The only draw back to the job offer was that they wanted him to begin working in the office by September. We debated about when to move the kids in the beginning. Should we stay until Christmas? We could ease into the idea of moving, I would be home to oversee renovations that would now need to be done by a contractor rather than by ourselves as we had done for our entire marriage. 

But first I had to tell my family that we were moving. Boom, like that. I told my Dad and Step-mom. They were happy for us, which I knew would be their response. They travelled regularly and my life had always been independent of theirs. 

Telling my mother was terrifying. She and I had never been very independent of one another. Two years earlier when my husband and I had gone to Virginia for a job interview and she had handled it remarkably well. Her and my step-dad were prepared for us to come home from that trip to say that we were moving. But Lynchburg, Virginia turned out to be a place that I did not want to raise my children. I didn't want them absorbing the bible-belt culture. I didn't want any of us to live in a city where transportation relied entirely on cars. Our hotel was across the street from the "big" mall, but there was no way to walk to it. The hotel had a car-service to drive people to the mall if they didn't have cars of their own. It took about 7 minutes to drive to the mall across the street. We had a real estate agent there to help us find a home. Before even going there we had looked at real estate on line there. I sent the links to our agent but when we arrived she did not show us any of those houses. She said that we wouldn't like the neighbourhood. We drove to a lot of different houses. Some with lovely big yards and swimming pools, all situated only minutes from town. My husband would have been close enough to cycle to work, except that the roads were dangerously narrow with steep ditches on either side. Besides, cycling on the freeway would have been impossible even if he could have made it into town. 

I was also able to confirm that there were no second languages offered in school until grade 11. Latin. Useful for all of the seminary students, but otherwise it was too little too late in my opinion.

On our second last day in Lynchburg we drove across town to where the beautiful old houses were. It took us a long time to navigate through the city. There seemed to be no straightforward route to the other side.

What we discovered was a lovely tree lined area. It was very homey and it felt right. So why wouldn't the real estate agent take us there? Because it was a predominantly African American neighbourhood. It was another peg in the coffin to discover that politeness could mask hate so well. 

We left without regret of the "what-if's". Virginia is a beautiful place full of tall trees and winding paths. But the culture sucked (At least in Lynchburg).

When the offer of a job in Ottawa arrived we were in a place in our minds where we thought we would probably stick things out in Winnipeg. We were mentally unprepared. 

My mother took the news pretty badly this time. She would argue with me about the move off and on throughout the process of getting everything organized to move for the next 5 weeks. She had her moments where she tried to be supportive but she just wasn't able to this time around.

I dreaded telling our children. More specifically our son, who is the eldest. He is sensitive and reactionary. He feels everything in its most extreme. On the day that Jonathan signed his contract we told the kids. It was as bad as I had imagined and it still sends a shiver through me when I remember the scene in our living room. My son was sitting on a chair across from me, my husband had arrived home from work a few minutes earlier and my younger child, my daughter hovered between us. They had both just come inside from playing outside with their friends. It was just any other day until the moment that I told them. When my son screamed it sounded like he was being physically tortured. It was one of the worst memories that I have. After his scream he cried hysterically for sometime. He was inconsolable and we just had to sit and wait him out. 

He is his mothers child. We both react strongly and quickly to things, and when we do it also means that the worst of it is finished. It's the slower, festering things that are harder to leave behind.

August was a crazy time but not horrible. We took the kids to Ottawa for five days in search of a house, and in the hopes that it would give them a sense of familiarity for the official move. We couldn't find a house despite having a very capable real estate agent. He showed us a home that was for rent. It was a two story house which was not entirely desirable in terms of accessibility for me, but it had a washroom on the main floor in addition to two more upstairs, it was clean and there were children playing outside. I didn't bother going upstairs to see what it was like. By then I was too tired to care about anything more than having a washroom on each floor, and that for now we would be living in a neighbourhood with children the same age as my own.

Four weeks after telling our family and friends that we were leaving Winnipeg we arrived in Ottawa. Despite all of our preparation there was still a great deal to do over the next many months-both in Winnipeg and in Ottawa

An Unexpected Catharsis

Draft written in June or July, 2011.

It's Saturday morning and I have some time to myself. I am listening to Sara Marreiros. Her music is a beautiful kind of melancholy.

Maybe I shouldn't be listening to her because music seeps into my head and my gut and I find the sadness that is just one thin protective layer beneath the surface of my consciousness.

I had the opportunity to go and listen to Sara Marreiros last year in Vancouver. I was in town for an exhibition where I was showing two new pieces. The exhibition was part of a larger festival going on around Vancouver and it was held at the same time as the Paralympics. I could have had a backstage tour of the Olympic village and I could have gone to a number of other events with the other artists in the art show. But I had been working long days and nights for months and after arriving in Vancouver with my mom and discovering that she was sick and that my cousin could no longer offer a place to stay for my mother because my cousin's youngest child had not yet finished all of his vaccinations and my mother was contagious. We had to send her to a hotel. I didn't know what hotel she had been taken to (by my cousin-in-law) and when I tried to phone to see how she was the next morning I couldn't find her. I was worried that she had died...And so by the time that the private tours and the concert with Sara Marreiros arrived I was too spent to go.

I had just spent six months working on my art, writing and rewriting my art statements, writing my applications for travel grants and I also had my full-time job as the main care-giver of my children. Mornings began with making breakfasts, preparing snacks and lunches, getting the kids cleaned up and dressed for school and making sure that their backpacks had everything that they needed for school. By 11:30 each morning I would return home with my daughter who was only in nursery for two and a half hours morning. By 3:30 it was time to pick up my son, feed him a snack to calm the bear inside him that begins to growl telling me that his blood sugar is low and that if we put food quickly and carefully before the bear to eat, that soon enough the boy, my son will resurface.

I would return to my work until close to 5:00 pm each day at which time I would realize that once again I had forgot to plan dinner and it was dinner time. I was supposed to be a stay at home mom first, feeding the hungry, clothing the naked, tucking in the tired. I was supposed to take care of my family, which I did, but I didn't take care of myself.

I would do all of this five days a week, for six months. And in the spaces between those things I was working on a painting and/or a privacy screen of which I had proposed for the exhibition. I was also taking french classes once a week, and volunteering on an understaffed arts board.

Before packing up my work for shipping I managed to have three curators come for studio visits to see my work. I borrowed work that had been given or bought to or by people and hung it in my living room. I made a slide show of other work, which ran on a loop. And then I had an open house so that I could show my body of work all together in one place, for one time.

I am not sure how many people came to my house that day but it was full of friends and acquaintances (artists) and family. It felt good. It was good. I could see that I actually had done some good work over the past six years since becoming an artist.

Once people left I had my friend, who is also a photographer, set up her lights and camera and photograph everything for my portfolio.

For the next few days I still had to add coats of paint to the privacy screens frame and to the paintings frame, both of which Jonathan had built. The light still needed to be installed behind the paintings deep frame to make the piece into a light-box. Jonathan spent a lot of time searching through stores to try to find the right light. It was a stressful time. And because I had never had to package my work for shipping I discovered that that was a labor intensive job that Jonathan would have to do. I also discovered in my search for a shipping company that this was going to be another expensive part of the process. Companies had policies that made the customer carry large heavy boxes to the delivery truck. I began to panic. Finally, at the very last hour Jonathan loaded our truck with my packages, and he and the kids took it to some impossible to find company out near the airport and passed off my work to them.

A week later I arrived in Vancouver. My mom had come with me because she needed to see my work in this particular exhibition. This work chronicled my life, the good, the bad but also managed to show how beauty can be found in the most horrid and painful places. She had been terrified of losing me since the day that I was born. My mom claims that I was born during a snow storm, my dad disagrees and has said that it was just snowing. Regardless, my parents know one thing with certainty- I was born hypoxic (not breathing), floppy (no muscle tone) and my head had likely been misshapen by the forceps that gripped my tiny head to get me out and resuscitate me.

So my trip to Vancouver to be in the HEROES exhibition and to be the only artist from Manitoba was monumental. It felt like the culmination of so many layers of separate lives.  I had spent months going through my hospital records from my birth to when I turned 18 years old. I had spent almost two months digitally cleaning up the many blackened photocopied records of my medical history. Many of the originals had long since been taken by doctors wishing for a clean copy and in their place they had left a photocopy. Clearly this had been done many times over on some pages...

The process was challenging. I had over 300 pages of records to decifer before I couldn't even begin to decide on what was relevant. It didn't help that most of doctor's had truly illegible handwriting. I narrowed down the records to 100 pages. But I couldn't figure out how to organize them. Should I separate chronological first, then by surgery, physiotherapy, conversations between physicians, descriptions of me both physically, intellectually, and by appearance?

I was fortunate that my friend Christine came over to help me make some sense of it all. She had been there for me when I was writing my application to get into the show in the first place. At the time that I was writing my proposal she was house sitting two doors down from me, which was an incredibly lucky break for me. Especially after I had arrived home from my sons soccer game one evening and was on the verge of a melt down (actually I think that I did have one) because I needed to send my application and a disk of images the next day and I still hadn't been able to write a coherent letter of interest, describing my ideas for the exhibition. There I was finally (!) with the opportunity to make art that reached the core of who I was and why my voice needed to be heard. And I knew that I had two really solid concepts.

So by the time that I arrived in Vancouver 6 months later, I had been stretched to my physical limits. It wasn't until the evening of our arrival that my mom finally off-handedly mentioned that her visit to the doctor earlier in the day before our flight left Winnipeg that she had pneumonia in both lungs and that she absolutely should not fly. She hadn't told me that she has a note in her purse from her physician explaining her condition in the event that she collapsed on the plane. She was incredibly ill and probably delirious. Her brain could probably only hold onto one thought- to be with me.

The opening night of the exhibition was amazing. It was the first time in my life that I felt pride in being a surviver. A surviver of my disease, my environment, my double life- life in hospital where time passed differently and the return to the real world, to school and friends where I would need to catch up on all that I had missed. That evening I was surrounded by a few amazing friends and family and almost 200 more people who had come to see our motley crew of talented artists. The curator, Bernadine Fox had prepared a speech for the evening and a dam broke in me when she came to the part where she said that she had looked up the definition of disability in a dictionary and that none of the attributes assigned to having a disability were positive. HEROES was the impetus of healing and joy for me. I burst into tears and wept for a long time. Cartharsis seems to come at unexpected times.

The "F" word. Faultering, flailing and ready to say "fk it all"

Written in the summer, 2011
I'm just going to have a bit of a rant here. You don't have to read it.

About a month and a half ago I applied for a mentorship program with a local arts group. TheArts are known for open-mindedness and an ability to embrace differences.

I feel as though the arts has decided that their work with inclusion and recognition is finished. Aboriginal artists are recognized, and programming and financial grants abound. GBLT artists and visible minorities have also found support. There is now support for new immigrants as well. What I do not see working is any real understanding and support for artists with disabilities. I feel as though we are the minority of all minorities. We can be any colour, culture, religion, political leaning, sexuality, economic level, gender, etc. and yet despite the breadth of who can be a person with a disability (anyone and anytime) we remain a very complicated niche minority of invisibility combined with the undisguised stares of society.

I received an email today telling me that I had not been chosen to be mentored by a senior artist. This was my third application in five years, so when I read at the bottom of the email that I was "encouraged to apply again", I just sighed and thought, fuck.

I don't know if applicants are weeded out before the committee of mentors review the applications. I would like to know. I would also like to know why I have been unsuccessful in my applications. I would like to know why the board that I am on has been unsuccessful so often in our applications of support (as a group of artists with disabilities).

If one more person running an arts council suggests that professional artists with disabilities should be applying for a health care structured arts program I will spit. I'm not looking for art as therapy.

I just want to know that I am working on a level playing field, but I'm not. I work my ass off. I have given up so much of my personal time in order to make things better in my province, but really, I'm preaching to the choir.

I'm tired of giving and not getting and I don't want someone to tell me today that hopefully soon I will be offering to mentor someone. I want to be mentored right now. I WANT.  I am not ready to be all fucking rosie about what my career may be couple of years from now. I am tired of waiting for everything. Today I am bitter and angry and tired and frankly I am allowed to be feel those things sometimes. Telling people to think on the positive side can be incredibly patronizing and is not the best response when people are upset. At least that's the case for me. First I need to grieve or sit with my disappointment before I am ready to look on the bright side.

I have volunteered for almost two decades for one thing or another. One time I did manage to get a couple of contracts, after volunteering for a few months. But at this point I have given and given and I am tired. I actually feel kind of stupid for ever thinking that if I just kept giving that I might in return find myself on the receiving end of something good.

Right now I kind of hate the happy people that tell me to be positive, or to just look forward to better times. Would the people giving me that kind of advice please put up their hands. Now keep up your hands if you were you born with a disability or have a disability now? Have you had your human rights ignored over and over again because of your disability? Have you, like me, never had a permanent job? Put up your hands if you've earned more than $24,000.00 dollars in a year. I'll have to keep my hand down for that one. Did you have babies that you couldn't carry around on your own and so you feared that social services would swoop in as soon as the public health nurse came for her first home visit to check up on "mom and baby"? Did your father in law tell you to only have one child because your mother was already helping so much, when in reality your mother works five days a week, lives in a different neighborhood and doesn't have a drivers license?

I hate that I couldn't get a fine art degree when I went to university. I was financially supported by the provincial government and but they would not support me in the pursuit of a fine arts degree (it was "not a viable career".) I feel cheated.

So here I am 23 years later, a professional-emerging artist. The taste of irony is bitter.

A June 2011 post that I left in draft form until now.
I have about forty minutes alone to sit in silence and allow my thoughts to bubble up to my consciousness. My husband and children have gone to buy groceries.

The past few weeks have been busy and stressful but they have also brought some positive outcomes. My children's school has agreed to install railings on the exteriors stairs as well as install a mechanized door at the bottom of the ramp where presently there is only a heavy door with very little room to maneuvre strollers, wheelchairs or walkers. The principle of the school has also agreed to meet with me (this coming week) and do a "walk through of the school and the area surrounding the school. I invited two other parents, both of whom have children with disabilities attending the school. Typically the administration in my children's elementary school has persuaded families with children with disabilities to attend other schools. Despite the fact that the official website of the school claims to be accessible, and despite the school's application to become a UNESCO school.

I am still waiting for handicap parking to be provided but between the city and the school division I suspect that this will not result in something that will satisfy those of us who need that type of access.

This past winter I received a return phone call from the city regarding my request for a handicap parking space in front of the school, closest to the cross-walk and closest to the ramp at the front of the school. The response that I was given was that I should have the principal of the school put in a request to the city, otherwise people like me, a regular tax paying citizen, who chooses to exercise her right to vote, or else to quote the City Engineer "everyone and their neighbour" would be putting in requests.

The likelihood of the City being flooded with requests for accessible parking spaces is highly unlikely. In fact, that scenario is almost laughable, at least for my neighbourhood it is, because if in 100 years, no one has asked for accessible parking at my children's school then I suspect that the massive amount of phone calls will likely never happen.

So fuck-you, you civic lazy prick for giving me the brush off. Naturally, when I asked for his last name he refused to give it to me when I suggested that I would be following this up with someone else. The street is city property, not school property, as such, that type of request can come from anyone. The suggestion that the school principle should put in the request because in some irrelevant way she carries more authority and knowledge in universal accommodation is an insult and patently false.

However, because I seemed to have reached an impasse with the city I passed it on to the administration at the school. Fine. One less thing for me to bang my head against the wall about.

At least the railings and automatic door will be installed. During the walk-through on Wednesday the other parents and I will be able to make observations of the challenges that we experience on a daily basis from the moment we drive to school, try to find parking, try to push wheelchairs through the snow for god knows how far away, or trying to walk through the snow without falling down, to getting into the school-stairs with no railings closest to where I have parked or the wheelchair ramp further away? Which will I risk falling on or from that day.

It is fortunate that the principal is willing to participate in this. I will put on my professional face for our meeting. I may bring print outs of the Canadian and Manitoba building codes to reinforce the fact that there are a few other important areas in addition to parking that need to be addressed.

When I suggested this tour with the principal I also included the three school trustees as well as the vice-principal of the school in my written request. Two trustees responded to my email, to tell me that if I needed any help to let them know (which of course was what my email was about). One of them asked me if anyone had told me what the process was for this and told me to call the school Superintendent. He gave me her name, but no contact information. His final note was to keep him informed. A third trustee did not respond at all, nor did the vice-principal. Which is really no surprise as the V.P. is moving on to bigger things this fall, as the principal at another school.

I spoke with the Superintendent's assistant on a Friday. She gave me the Super's email address so that I could forward my email. She also took down my phone number so that the Super could call me back. The assistant said that I may not hear back from her boss that very same day and if not then she would likely call me on the Monday. That was nine days ago. I'm still waiting for her to contact me.

(I just heard our car pull up, and footsteps coming to the door, my daughter opens the door and calls out a cheery "hello!").

Too be continued, whenever...