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.