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.