A place of our own.

Well, nine months after moving from Winnipeg, Manitoba to Ottawa, Ontario we have completed our second move- from the house we rented to the home that we bought.

We're happy with our new home. That's not to say that it is perfect but it has potential. I am still physically exhausted from packing. It took almost a week to pack and even so there are still things to bring over from the other house. Fortunately we don't live far from our former place.

I totally underestimated the amount of time that it would take to pack everything up. I think that there are probably several reasons why I only managed to pack about 3 boxes a day for the first few days. I was also trying to organize all of the paperwork that we had accumulated since moving to Ottawa- renovation receipts and notes for our house in Winnipeg; the contract with our real estate agent; the offer and signed purchase agreement with the people who bought our house; the lease for the house that we've been renting in Ottawa, the school applications, immunization records, allergy records, school notices, homework, certificates and artwork that has been saved with pride; and then the offer to purchase this house, the house inspectors copious notes on what was wrong with our new home, and the list just goes on.

I also tried to surreptitiously throw-out some of the kids things such as clothing beyond repair and craft projects made of toilet paper and toilet paper rolls, tape, string and shoe boxes. I feel guilty throwing away (or putting them in the recycling box) because I know that to the kids everything that they have made is important to them. But if I kept all of it we would need much more space and frankly my sanity would be at risk from the clutter...

So on the days that the movers arrived my husband and I were still packing. And packing and packing and...By the time that the movers had finished delivering their second load to our house I was still at the house packing things but was doing it all while crawling or scooting around on my butt. My hips had lost all cohesion and my leg muscles were no longer able to respond to any type of effort for long.

At one point I was sitting upstairs (organizing more papers!) and crawling around with a box that I pulled around with me to pick up little bits of toys, barrettes and torn bits of paper from the floor. So actually I guess that I was pulling a box and a garbage bag around with me. Finally all that I could think about was how completely exhausted I was.

You know when you're so tired you feel as though you're on the verge of tears? That's how I felt. Too tired to cry and yet just below the surface tears sat waiting for me to let go. Instead I decided to text a friend who has just moved to London, England. I wanted to talk to her because her move is still going on as well and I knew that her experience with the exhaustion and stress of moving were probably still fresh (if not ongoing).

It took so long to write a message to her that I had that sense of removed shock, observation with a hint of this is a bit upsetting, my fingers aren't working...


I must admit that my fingers have felt weaker for a while now. Has it been a few months? A year? I don't know. It's so easy to not take notice of gradual changes. Especially when they're unwelcome.

On the positive side I feel so much happier to be in my own home. My forever home (presumably). I wasn't a very happy renter. I rented apartments in my late teens and through my twenties but they were places that had seen many other tenants, they weren't houses that a family had put any love and care into like the house we just moved out of. I never felt relaxed in that house. It was pretty but incredibly poorly laid out. The house had no flow and wasted space. For me it was extra frustrating because it meant that I had to make much more physical effort to get from point a to b- more footsteps to walk around needless barriers, more stairs to walk up and down...but when we came to buy a house in August we simply couldn't find one in our price range and with accessibility in mind.

The house we chose to rent wasn't ideal, because it was a two story home, but at least it had a washroom on the main floor (well, actually one step up from the main floor). The neighbourhood was full of children which meant our children would have opportunities to make friends nearby. The fact that the rent was probably only two or three-hundred dollars more a month than houses that were utterly decrepit was also significant in our decision to live there for a while.

After eight months of searching for a 1 story house and finding nothing affordable for a family of four I began to slip into another depression. I began to think that moving to Ottawa was utter folly. By then we had sold our house in Winnipeg (we had been renovating our house for 8 years and with the decision to move within a short period of time we had to renovated long distance, we hired a general contractor, another contractor to finish the master bathroom that we had begun only a month earlier and my husband and I each travelled back to Winnipeg a few times to put in some work on the house as well).  So, to consider the fact that we might never be able to have a house that was accessible for me was pretty devastating.

A few friends and family suggested looking at multi-storied homes and installing chair lifts. I balked at that idea. Not only because I am not emotionally ready to use one, but also because walking up and down stairs occasionally is good exercise for me but more specifically I was unwilling to buy a house that going to complicate my life. It was challenging enough packing a bag every morning to take downstairs with me and then packing up another bag or two through out the day in order to keep a semblance of order to our house. The kids would dress in the living room before school and I really had no desire to have their pyjamas and favourite blankets on the floors, and the sofa. Life was feeling chaotic enough without more things out of place.

I also felt, and yes it's somewhat irrational, that I shouldn't have to buy a house that wasn't serviceable to me. Here I was living in the nations capital and I was discovering that was an incredibly inaccessible city. I felt incredibly angry. I still feel disgust over the lack of accessable houses being built here, but now I can remove myself from those feelings enough to begin to pick up where I left off with my inquiries regarding New-build legislation, which is currently in research and development. Until by-laws are put in place land developers will continue to take short-cuts by using the smallest lot-sizes possible to fit houses and townhouses are. So the city will continue to grow entire communities that have absolutely no houses for me and other people with disabilities.

When I first realized that we couldn't remain in the neighbourhood that we were renting in I felt as though I was experiencing one continuous slap in the face. My children would have to be moved to a different neighbourhood. The neighbours that my husband and I had befriended would no longer be nearby if we felt like a chance cup of coffee or needed a hand with something. It felt so entirely unfair and I felt powerless.

A gentle man.

Art offers the possibility to see and learn things in a way that is intrinsically personal. 

Being an artist can be both terrifying and liberating. Art is subjective- it's pretty scary to allow people to see my inner most thoughts. But my thoughts-mostly sub-conscious are what bubble up and out onto the canvas or through to my computer monitor. I am happiest when I am making art. Sometimes it can be frustrating but for me it is almost always very meditative and soothing, which is interesting because my work is almost always rooted in a childhood memory. The seeds of my own perception were planted very early on in childhood, rooted in words and phrases fed from doctors as they assessed my body and mind, discussed my quiet and nasal voice, my "waddling gait", and my"waisted appearance".
I grew up looking at myself under a microscope. The result is that my work usually ends up with at least a suggestion of bones, veins, blood or flesh. And oddities-crooked things and odd blobs. My work doesn't scream of these things (that scream has long since been muted) but it is exactly because of that suppression that even my cityscapes look vaguely organic.
It's not abnormal to live in semi-seclusion for months at a time while I work on a specific theme. Perhaps that is why the need to show  my work is so important. Maybe it's only natural to emerge from a long period of working in solitude that makes me needy for peoples responses to my work. Reaction, comprehension, head nodding means that I have gotten through to people, or that maybe in some way they see my work the way that I want them to see me.The feeling of restrained anticipation, the need for external feedback can be overwhelming...

My arts and disabilities group held its first annual general meeting in June, 2011. It went well (I think). We had fresh faces at the table which was encouraging. It had always been challenging to get people to take the time to listen to the reasons why we existed and why we needed support in our careers as artists. We wanted recognition like any other minority group. I don't think that people realize just how many artists with disabilities exist. It's actually rather ironic that I am a visual artist. An invisible visual artist. So, how does that work exactly?

Unfortunately most people-even people in the Arts are unaware that there are people with disabilities working as artists-emerging, established and or professional. We are not painting or dancing or acting because it's therapeutic (although it is). We're doing it because it's what drives us.

Getting back to the AGM, it had been a physically and mentally challenging period for us, and the week or two leading up to the meeting was gruelling. The late nights were stretching me to my limits. I wasn't the only one working that hard, but it didn't make it easier for me knowing that other people were tired.

On the day of the meeting I watched YouTube video's of Roberts Book of Rules. I hadn't heard of this handy little book of how and when to say "yay" or "nay" or to ask if anyone was willing to move a motion and then ask for someone to second it. The rules were so archaic as to reduce their value to something that Monty Python would have performed in a skit. The manner of speaking was so unnatural that I had to write notes to myself on my copy of the agenda. I once again felt like I was encumbered by rules without a lot of real life value. In the end I had to give up preparing for the meeting and just go.

One of our members sat beside me at the meeting. She would whisper for me to "move on" and tell me when to say the correct word or phrase that Robert had deemed correct.

Her prodding, while probably intended to be helpful  bordered on harassment. It had been a trying month or so dealing with her. She had been working a lot for us for the last few months, maybe even more than me. But she was a person without any disabilities that I am aware of. Her one child was already grown up. She and her husband lived in a very nice area and she had a job that allowed her to work with us during her work hours as well as her personal hours. It was her choice to do that but it didn't make her easier to deal with. She had strong ideas of how things should work and while her motivation was without question the desire to help us find a strong foothold to maintain our group, she had developed tunnel vision and was hell-bent on going in a direction that wasn't entirely the direction that the board wanted to take but somehow we all knew that we wouldn't be able to dissuade her. At a meeting where we had a two hour deadline she snapped repeatedly at me. I finally snapped back. I apologized to her hoping that she would recognize her own behavior and keep herself in check. Instead she told me how she had been working long, late hours on this project since the previous week and that she was sleep deprived. The insinuation, at least my interpretation was that she felt she had put in more than anyone could possibly comprehend and was therefore allowed to be a bitch that day. Why bother telling her that I had put all of my time into it as well? She would never have understood anyway. Our relationship was becoming toxic. However, here we were, at our very first AGM. It was time to just let it go. Of course I had buckled under the requests and smooth complements of our board to agree to be the Chairperson for the following year...a month earlier I could have been heard on a number of occasions telling friends that I couldn't do it anymore. That I wasn't suited for it. That I had not made art in almost a year and a half because my energies were consumed almost entirely by the need to keep our board going- aside from my other responsibilities and issues-family, volunteering at the kids school, medical appointments and the almost constant pain that I had begun to experience over the past few years...

As our meeting came to an end one of our members expressed something that I hadn't thought to put on our agenda. She had flowers for one of our board members who was unable to attend- he was recovering from surgery. She expressed regret that he wasn't with us to witness our first AGM, she said that we missed him and felt his absence. It was all true. His wife, who was the founder of our small dynasty was in attendance that day. She graciously took the bouquet and sentiments home to her husband. I felt like an idiot for not thinking of having done that myself. I had only thought to do the perfunctory "regrets". I had thought of compassion in general terms while writing my opening remarks the night before, I struggled to capture why we needed to grow as group and as a support network. But I was thinking in broad brushstrokes and had missed an important detail, one of our own was sick and missing out on a day that we could finally celebrate how much we had already accomplished.

The meeting was adjourned.

The next day I had a meeting scheduled with our founder and former board member. When she called that morning I knew immediately that something was wrong. My alarm bells went off before she even said that she would be unable to meet with me later in that day (or maybe it was the following day, who knows, it's all a blur now). Terrified to hear why she couldn't come but needing to know what was causing her to sound so guarded I pushed anyway. What was wrong?! What had happened?! Please tell me.

Her husband, our lovely friend and our behind the scenes willing helper had died in the night.

I think that everything began to fall apart with the passing of this one person who was by far the kindest and least likely person in our group to insinuate his ego into any decision. I felt like I had lost a father, and a trustworthy friend with whom I had always felt comfortable working alone with or while my children were nearby. I trusted him implicitly. He was just Him.

His service was held the following week- I felt selfish shedding so many tears when he had a wife, a son, and other friends and family who had known him and loved him longer than I had. There were so many people who would feel his loss much more than I would. He was a gentleman. A gentle man. He was a wonderful husband and from what I understand he was a wonderful father. His son, a young man in his twenties looks so much like him that it was a bit confusing to be mourning someone who seemed to be standing in the same church room with us, his facial expression set with the same calm Buddhist demeanor as his father. Who knows what went on behind the faces of father and son but I'm pretty sure that their kind expression ran deep.

Despite his death, life continued for the rest of us although it wasn't the same.

Is your name Frida?

Who would you think of if you had to name a visual artist (one who paints, draws, collages, photographs, creates fibre art, etc) with a disability? Who would you think of?
Frida Kahlo.
Who else could you name?
Anyone?
Anyone?!
So when I lament at the state of artists with disabilities people often respond with "Well, what about Frida Kahlo?
I throw my hands up-it's a gesture of OH MY GOD, NOT HER AGAIN!!! She seems to be the one artist known for having a disability.
She comes up every time that I suggest that the arts is missing out on amazing talent because society and the institutions that support the arts has not accepted us. In fact the level of discrimination-by-ignorance in the arts in Canada is particularly bad compared to the rest of the Western world.
Looking back through an historical lens Frida Kahlo made it seem like a pretty easy venture despite her personal losses- permanent injury and pain, unable to have children because of her accident, and tumultuous relationships.
Without a doubt Frida was naturally talented and incredibly determined, but in addition to those personal qualities she also had the benefit of growing up in a wealthy family who encouraged her to participate in sports in an era when feminism was almost unheard of and she was regularly exposed to intellectual and political debate with family and friends. Economic opportunity and intellectual exposure, the ability to think critically from an early age would have undoubtedly provided her with vital tools in shaping her future.
There are no statistics on how many artists in Canada have disabilities. Therefore there are no statistics on the income levels of artists with disabilities either. There is no information on how much artwork hanging in the National Gallery of Canada has been made by an artist with a disability. Naturally many artists develop disabilities over time or they reach an age were they find that their sight, their hearing or the mobility changes. Or they develop chronic pain.
That's life.
I think that there is also a difference with artists who have become successful professional artists and only later develop a disability than those who are born with a disability. For those who have established their careers prior to developing a disability means that they have had a significant natural resource that others have never had- energy.
 One of the best places to meet artists is at the openings of art exhibitions. But beyond the possible barrier of stairs or a heavy door to get into a gallery there are many other factors that can affect the ability to even get to the gallery.

Receptions are often in the evening. I'm usually too tired by the evening to go out even if I really want to. If I do manage to go out the next factor will likely be whether I can find parking close enough to the gallery to walk from my car to the site. If I can't find reasonable parking I will drive around in search of a spot a few times before I finally turn around and go home. If I do find a parking spot my next concern is probably two fold- safety walking in the downtown core by myself. I'm small. My son who is nine years old is almost as tall as me now. I walk slowly and use a cane or a walker.

Frida Kahlo is a legitimate representative of artists with disabilities but that only underscores the fact that a representative must therefore be a part of a group of many similar individuals. That one woman's history is proof that a renowned artist living with a disability(disabilities) has existed does not negate the fact that there are thousands of artist right now struggling for many of the same things that Frida struggled for half a century ago.

We can't or at least we shouldn't live in an historical vacuum we should learn from it.
So, I guess my point is that the arts and disability world cannot begin and end with Frida.

We as artists with disabilities are a group that are neatly hidden by the barriers created in having to manage health/illness/disability, as well as economic and chronic accessibility issues- mobility and the same opportunity to access professional instruction in order to become artists. For example if you want to study painting at the University of Manitoba and you cannot manage to get up or down stairs then you cannot hope to become a painter, at least not there. The University of Manitoba is building a new School of Art, but they're leaving the painting department in the old barn (The University of Manitoba originally focused primarily on agricultural studies and the painting barn was converted from a livestock barn) as it is. The school administration told my friend to focus on completing some of her other course credits that she needed in order to earn her degree. The problem is that she doesn't want a degree, she wants to learn to continue to push her skills as a painter which usually is developed by having access to high-quality guidance from professional senior artists.
She did manage to go to one or two years of classes in the painting barn. On painting days her husband would drive her to school and carry her up the stairs in the barn. After class he would carry her down them too.

Exclusion is not passive. The lack of information on what students of fine arts need and what artists with disabilities need is not a passive decision. It is an ongoing choice made with all of the information available to architects, university administration, provincial government and federal government too. They all know about reasonable accommodation.
The onous is almost always put on the individual by implying that there is only the one person who has ever needed extra (re: costly) help and it's you. Yes, because of you we might have to spend money on something we've been getting away with for decades despite knowing about universal access, reasonable accommodation and barrier free design. The terminology may change but the resources available to inform public institutions has only grown. But because of you and only you we will not be able to give the rest of the student body new desks or chairs or heated classrooms! Because of your unique situation as a student with a disability, something that in the entire history of our university we have never experienced we will have to accommodate you and as a result everyone else will have to suffer .

Contemporary art is not so much about what you see or hear, but the story behind the work and the time it takes to develop ones own visual vocabulary as an artist and to carve out a niche that is socially relevant and compelling (or in some cases repellant.) If artists with disabilities are seldom being seen or heard then the arts dialogue is incomplete. What are we losing as a result?

Segregation and the invisible ones...

This post is dedicated to Blogging Against Disabilism 2012
Blogging Against Disablism Day



 I was born with a physical disability. I wasn't breathing as my mother gave birth to me. To save me the doctor used forceps to extract me as quickly as possible. My head was misshapen by the forceps and bruising became noticeable over the next few days. I was floppy (no muscle tone and no reflexes) and had to be assisted by an oxygen tube to breath. The doctors told my Dad that if I survived I would be retarded (I hate that word), blind and deaf.
However, after almost a month in an incubator I was finally sent home. My parents had me baptized (the only time that they ever took me to church for anything other than funerals or weddings) because there wasn't a great expectation of me being able to survive through infancy. Purgatory would have been hell.... Throughout my first year of life my mom and dad had to take turns monitoring my breathing because there were no baby monitors for personal use back in 1970. They managed to catch every episode where I stopped breathing as well as every episode when I choked. I was a somewhat frequent passenger of ambulances until my parents decided to move from Archibald Street in St. Boniface to a place within walking distance of the emergency room at the children's hospital. I survived. Their marriage didn't.
By the time that I was 6 years old signs of depression were already beginning to appear and my first anxiety attack followed in grade 2. I didn't know why I felt terrified and I didn't tell anyone. I had no words to describe why I suddenly felt like the sky was falling and when that feeling came on I couldn't even speak. Terror would keep me frozen in place.
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Present Day

I am married. I am the mother of two children, my son is 9 years old and my daughter is almost 7 years old. I gave birth to them. It made me feel powerful in a way that I had never felt before. I spent so much time marvelling over my infant son that I came to realize a few key things: every child is important and deserves health, happiness, and opportunity; and that life was too short to spend the rest of my own life afraid to really live because of an overwhelming fear of failure.
I began to think about what I wanted for my children and what I wanted for myself. I wanted them to see me as vital, capable of making change when I felt there was the possibility for improvement. I decided that I owed it to myself to try to be an artist. I had always been a talented drawer. But I used my drawing and other creative skills only casually. I would make gifts to give to family and friends. I ignored the artist in me because I didn't have a fine art degree. I had an interior design degree. I didn't think that I had permission to make art. I thought that there were rules that I didn't know because I hadn't formally trained as an artist. I somehow thought that my years of design experience, the photography classes, dark room classes, painting classes, drawing classes and even jewelry making classes were indulgent and wasted.
 I secretly began to practice art when my son finally began to have long enough naps for me to focus on painting for about two and half hours a day. He was ten and a half months old and I was 34 years old. It took a few months to get over my fear of what to paint. I think the problem was that in the end my work was conceptual and rather than literal and I still didn't know what the rules were to make art that really was art. I couldn't just go ahead and paint the things that I saw in front of me. I had to find my rhythm, my internal vocabulary. At first I spent as much time actually drafting out my work as I did painting it. I approached it like I would have done if I was designing a floor plan. It's what I was familiar with.
By the time my son was one and a half my family had found a happy rhythm. We had baby number two, a daughter ten months later. I painted throughout my pregnancy with her and after she was born. While my son went down for his afternoon nap I would sit on the floor of our sun room so that I could nurse my daughter while she lay in my lap (I couldn't hold her up for long, my arms weren't strong enough) and while she nursed or napped I painted. One day I noticed that she had blue paint on her head and I had the same paint on my breast. It was funny because it was proof that I was really living the way that I wanted to. I was productive and I felt good.
Eventually I began to exhibit my work. But I grew frustrated by the lack of opportunities for artists with disabilities. My children became old enough to go to school and that too was a source of frustration-their school was incredibly inaccessible and yet claimed to be the opposite. The school division felt that the existence of a wheelchair ramp into the school as well as an elevator in the school were all that was needed. For the next 3 years I requested handicap parking be put in place, that railings be installed for the exterior stairs at the side entrances of the building and a number of other things. At the same time that I began to volunteer at my children,s school and to put in requests for improved accessibility I met a small group of other artists like myself who were also searching for support for artists with physical disabilities.Over the next three years more and more of my time went towards our group. By the fall of 2010 I had no spare time or energy to make art. I volunteered less in my childrens classrooms than in previous years because I was fighting too many battles and I had no energy left for anything else. Eventually I became the chairperson of our arts and disability group. I hated the need for politically correct terminology, resented having to take over the position because I knew that it was a job that I wasn't suitable for. But we had lost a vital person in our group because she and her husband were in jeopardy of losing their house if they did not find more employment. If no one could become the chairperson of our group it would fold and because a group a few years earlier had tried to find professional support for artists with disabilities but had had to close it's doors due to it's members health issues and personal financial issues, I didn't want to see our three years of hard work to fall apart as well. And so I kept pushing myself. I began to resent the amount of work that I was doing. I felt that the time that I put into our group was unapreciated and undervalued. I had two small children and I kept taking on more. Obviously I should also acknowledge that one of my biggest flaws is the inability to say "NO". I was encouraged to continue my work with our committee. From their perspective I was gaining excellent skills that would only add to my career in the future. Perhaps there will come a time when they will be proven to have been correct, but I continue to wonder how my newly acquired skills help me as an artist. I did the work to continue my work as an artist, not in the hopes of becoming an administrator. I side lined my career and the opportunity to make money by working, unpaid for the possibility of a better future.

Last summer everything changed when my husband was offered a job in another city.
We arrived in Ottawa without a single friend or family member to rely on. I still have not met other artists, nor have I had time to practice art. Life has been all about finding a place to call home. And in the meantime life doesn't stop-the kids have insane amounts of homework every night, and they're only in grades one and three! Their school is only a few years old and yet the elevator is kept locked. Parents with school aged children and younger children leave their strollers on the main floor and carry their little ones up the stairs when they have to. I go to the school office to ask for the key to the elevator. It pisses me off that the elevator is kept locked. "It's for the safety of the children." If the school had been designed with the necessary understanding of accessibility it could have avoided having to keep the elevator locked. I left a message with the school board a number of months ago and of course I haven't heard back from them. It's like starting from square one again. First in Winnipeg and now in Ottawa.
As we neared the 6 month mark of living in Ottawa I had the upsetting realization that despite my new city being the nation's capital, it was as backwards as anywhere else. As I mentioned in an earlier post we had to rent a house when we moved here because we weren't able to find a place that we were comfortable committing to when we knew so little about the neighbourhoods, the commute involved to work and what kind of house we were going to be able to afford. I realized that we were in a neighbourhood that had essentially created ableist segregation.
This is essentially what I wrote to friend a few months ago;


I live in a suburb owned by a developer which means that they own all of the land which they divide up into the narrowest possible. If you divide up enough of those lots, and build two storey homes and three storey townhouses the profits would be incredible. My understanding is that this particular neighbourhood was created by an accountant, a friend suggested that he considered the profits down to the square inch... The home that we are currently renting is accessibility-challenged, in fact all of the houses in this rapidly growing neighbourhood are inaccessible. 


Each of the houses have the largest front steps possible-probably pushing the building code for stair heights to their limits. Giant steps lead up to the front landing or porch of each house, railings are optional, there is a step up at the thresh hold of the front door, and then there is an option of adding a step down from one area to another before the builder actually builds the house. This kind of design was considered flawed thinking as far back as when I was studying design in the late 1980's/early 1990's because of the limitations that changes in floor height placed on people with mobility challenges but also because it was just a plain stupid thing to put offer as a design feature. If a house needs something interesting play with the the ceiling height and details- that is a design feature which makes more sense and works for everyone. 


In the first year or two of this particular neighbourhoods development one of the house plans available had a master bedroom on the main floor, with a second and third bedroom upstairs on the second floor. While it wouldn't have been an ideal house, since I would still have to go up and downstairs to clean the kids rooms it seemed worth considering if we could offer our children the chance to stay in the neighbourhood that they had begun to establish friendship in and where they had already begun to feel at home. When I went to the sales office I was able to park in a nice handicap parking space and walk up a ramp to get to the front door. My expectations grew as I walked in because obviously accessibility had clearly been considered. But my hopes were quickly dashed though. The builder no longer offered that particular house model and the company that had originally planned this community was no longer involved. I was told to try a builder in a different neighbourhood. 
There are no single storey homes in this area. These cookie cutter homes are built for people who are able bodied. End of story. My sense of injustice grew. We began to look at bungalows that needed a lot of work because which made them more affordable, but even then they would have been too small for a family of four. By allowing entire neighbourhoods to be built in this century without including a single accessible home the government of Ontario, (and as far as I understand, all of Canada) is as I see it a violation of human rights - systemically allowing for a society to continue to segregate people with mobility challenges to only certain neighbourhoods. 
At the moment all communities must have a recreation centre that is fully accessible to all segments of it's population and yet ironically there is no legislation ensuring that the communities themselves offer housing for those with disabilities. This doesn't create neighbourhoods of varying ages, income levels or a mix of young families, extended families as well as single people or couples. It creates homogeneous pockets without variety. 
It segregates without intention. 
It happens for many reasons. It happens because as people with disabilities we are often just trying to make it through each day. How is it possible to educate and inform the decision makers when we have neither the economic power nor the ability to always keep pushing for more and better?
There are developers that design bungalows in Ottawa, but unfortunately not in the area that we need to live in. It's all rather irrelevant anyway since the new bungalows waste an incredible amount of space with splashy spaces by including both a great room, and a living room; a breakfast room and a formal dining room and yet most of the floor plans that I have looked at typically include only two bedrooms. When a third bedroom is an additional option it is either up in a loft (and therefore is not a bungalow) or is mashed up near the front of the house so that the room can be either an office or a very small third bedroom. I can only assume that the builders are focusing on our aging population rather than on young families. The fact that many of these single storey homes also happen to be connected to golf courses or are for "adult living" means that these communities are simply aimed at the well off 55 plus adults who can afford to spend a minimum of $500,000 for their slice of life.

There is an apparent lack of understanding that family homes sometimes need to be accessible as well. And here's where I think that there has been no thought or notice given to the people in government who research and then create legislation and by-laws. I do not think that it has ever occurred to anyone that sometimes it's the caregiver who needs the accessible home. I am the person with a disability in this family. I am the mother, the cleaner, the resentful chef and many other things. No one is here to assist me because it is my role and responsibility in this family. There are supports for parents who have children with disabilities (to what degree I don't know) and there are programs for senior citizens to have caregivers come in if necessary and there is accessible housing being built for our aging population more and more but no one seems to be aware that there are people with disabilities raising their own families. 

I think that there needs to be a representative percentage of accessible homes in each neighbourhood equal to the percentage of people with disabilities in the overall populations of a city. 

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...

Todays forcast: Stormy

I should have showered by now and be running my errands. Instead, I feel trapped where I sit. My anxiety which has been ever present for almost half a year now is soaring today. I am overcome with the unknowns involved it leaving the house. I have too many things to do, and they all involve me having to drive. I need to pick up some photographs that I sent in for developing. The store is downtown in an area where parking spaces are difficult to find. I am already feeling anxious about all of this.

I don't want to have to walk too far in order to pick up my order. I feel simultaneously nauseous and on the verge of tears. I also need to get a banner and some literature printed and laminated at another store today because next week a committee that I sit on will have a display board up at the legislative building for the provincial access awareness week.

I think that it's ironic that in trying to create better access (to the arts) in our province, that I am going to spend today worrying about how I'm going to do everything that needs to be done. As chairperson, I have tried to delegate. To some degree I have been successful. But in the end it's a sad state of affairs, because I am the least mobile person on the board, the only person with two young children, the only person who drives back and forth to school to pick up or drop off the kids at 9:00 am, 11:30 am and 3:30 pm. I had been the person to take packages to Canada Post offices-always with one or two children with me-which meant an additional struggle to get my youngest into her car seat and buckle her seat belt up. No matter whether it was -25'c outside my mitts had to come off to fiddle with the metal buckles until finally I heard the magical "click" of the buckle locked into the base.

Since becoming the Chair I had all but given up my art practice. I had to quit my french classes that I had been going to for a year and a half and I still hadn't finished my website.

During a meeting with two other artists last month, I said that I was tired of being told that being the chairperson of a network would be great for my CV. I asked in what way it would it be great for my CV when all I wanted to be was an artist. The look of dawning comprehension by my friends was funny. They had assumed that everyone would find the experience useful for future endeavors in order to sit on more boards, or focus on developing other organizations. They aren't as useful when all that I want is to be an artist and all I wasn't being was an artist.

So, why am I on this board? Because I know that there needs to be better understanding of the challenges of artists with disabilities in our province and I have been involved in this group since it's inception three years ago. I don't want to see it fall apart like the first group of artists here who attempted to do the same thing, only to close it's doors because of its core members health issues, their need to work in order to pay the bills, and their inability to work and devote time and energy to a demanding unpaid job, regardless of how important it may be.

So, when our main leader left last summer because of huge financial and personal strain, the boards group was left with only a handful of people. Two of whom worked with us in an arms-length capacity and the other person was too modest to call himself a professional artist and therefore didn't think that it was appropriate for him to be the chairperson. That left me as the only viable candidate. I had walked into our monthly board meeting knowing that I could not take on the role of chairperson. But with no one else left I had no choice but to say "okay, I'll do it".

So, here I am today, overwhelmed and exhausted and telling myself to just get moving, moving (to quote Dori from the movie Finding Nemo.) For the next several months I continued to move towards our first AGM. I continue to work on our blogspot, I pick up packages for one person and deliver them to another, I make phone calls to people with power over money and while it feels as though I am acting in the capacity as team mascot I still represent the group as the chairperson I do what I am told.

On more than one occasion I am called on the phone to fax something somewhere. I don't have a fax machine. I'm a stay at home mom. And who uses fax machines anymore? I scramble to add a few more signatures to documents due at the end of the day. Panicked, sweaty and terrified that I have messed up in missing to sign one page of a grant proposal we may very well lose an opportunity to funding that we desperately need. The opportunity would allow us to receive organizational funds. It would allow us to hire the very same person who created our group and who had had to leave in order to find a job that paid in real money.

Exhausted and feeling unappreciated and misunderstood for my occasional complaints which were always rebuked by the fact that I should appreciate the exposure to work in this capacity despite that abhor administrative type work and feel no passion in this except when there was an opportunity to talk to new people, to bring them a clear understanding of the situation that we as artists with disabilities were in. I could be passionate in my story telling, and it was only in those moments where the real me slipped out uncensored that I felt that I did our group justice. While my fellow board members attempted to soften my edges, and suggest repeatedly that I would do well by learning politically correct terminology and sensitivity I felt that it was a form of censorship. If I could not use real world words then my feeling was that as a society we would remain disconnected within society. In the extreme p.c. terminology distances people from the hard facts of life. However, I continued until I had seen the work through. While I didn't work alone I had sacrificed health  in addition to everything else, but our small network began to gain new and eager bodies.