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.
Friday, May 27, 2011
Sunday, May 22, 2011
Scoli-Oli-Osis
Pain.
I cannot get rid of it.
During the summer holiday between 5th and 6th grade, I spent a lot of time sitting. I sat and watched t.v.. I sat and drew pictures. I sat and sewed. I sat alone waiting for my mom to come home from work each day.
Sometimes I played with friends, and I a few times that summer took the greyhound bus to a town in Ontario to stay at my grandparents cottage or to visit my aunt.
But what I did most of all was sit at home. At some point that summer I began to notice that my back hurt when I sat for too long. I was 11 years old and I didn't think to tell anyone about it.
I entered grade 6 and sometime in those first few months of school I went for an appointment at the local Shriner's Rehabilition Centre for Children. My Dad picked me up from school to take me to my appointment. Honestly, I didn't hear much of what the doctor's were saying. I was angry about missing the rest of school that day and I was anxious, because when my Dad and I arrived at the reception desk I was told to go to one of the changing rooms, take everything but my underwear off and put on one of the terry-cloth robes hanging inside the changing room. For the next four or five years of check-ups at the Shriner's I would go to the reception to check-in, and then go to a changing room, strip down to the bare essentials and choose one of the many multicoloured striped robes.They were all too big for me.
The receptionist at the clinic was this lovely older lady named Mrs. Honeybun(? honey something...). Whenever she got up from her desk the first thing that was obvious was that her back was extremely deformed. Her back had a huge hump that looked like she was carrying an ant hill on her back. Her body twisted down and towards the right and her head was in an incredibly awkward position as she walked. I had no idea why her back was that way...I thought at first that she had Spina Bifida, like a girl that I had met in grade 1. I had met that girl while we were both in the hospital waiting for surgery. She was older than me. Her mother worked at a publishing house so we read a lot of books the night before our operations. She showed me her back. It looked raw because it was so full of scars. By then she had had over 20 surgeries, and her back was a huge bulging mass. So, I thought that maybe Mrs. Honeybun had the same disease.
After changing into a robe I would sit in the waiting room with all of the other kids and parents until it was time to see the Orthopedic Specialist. While all of the kids and parents sat waiting to be called for their appointment, we would stare up at the t.v., which was bolted high up on the wall so that everyone had to crane their necks to see it. There didn't seem to be cable so the channels were few and fuzzy.
Walking in to the examination theatre for the first time I had no idea what to expect or why I was there. Maybe my Dad didn't either. Besides, I had been probed and prodded by specialist since I was born, so I never thought to ask why I had another doctor's appointment. It was just the way that life was.
The exam room had a curved wall at the back, the walls perpendicular were angled out. To my horror a group of medical students came from a hallway that curved around all of the rooms, pulled back the curtain and without asking it it was alright with me to have a large group of med. students observe (stare) me throughout my exam.
My doctor would begin to provide a brief medical history about my congenital defect, my inability to run or walk up stairs without using my arms to pull myself up holding onto a railing, how I had had a cleft pallet repair in grade 1, that I had had muscle biopsies, the first one when I was two years old and the next one when I was five or six. He would go on to say that the biopsies and the ECG's were suggestive of a form of Spinal Muscular Atrophy.(back then there wasn't genetic testing like there is now).
Next would come the dog and pony show where I had to do strength tests for each doctor. I was told to squeeze their fingers as hard as I could, to push their hands away, to pull their hands to me, to sit on the floor and try to get back up. Then they would discuss what number my strength (or weakness) level for each area of my body was. They they would also test my reflexes. I had watched enough Flintstones episodes to know that Fred always kicked his leg up when the doctor hit his knee. So when the doctors did the same to me I would kick my leg up too. In reality my body didn't respond. I had no reflexes. I did however have physical sensations when the doctor would run the metal end of the reflex hammer (?) up my foot.
During medical exams at almost any type of appointment I would also have to get off of the examination table and walk across the room, back and forth, back and forth while the doctors would talk to each other about my waddling gate, and the tightness of my achilles tendons that made me walk on my tip-toes. I would have to bend over too. The doctors would look at my back, run their fingers down my spine.
During that first appointment I had x-rays taken of my back. I remember that there was a sign in the radiology waiting room that said that I should tell the doctor if I was pregnant or thought that I might be pregnant. As an anxious adolescent that sign caused me to become even more anxious. What if I was pregnant from a toilet seat?! Yes, the likelihood was slim, but still, what if?
At some point during that first afternoon at the Shriner's Scoliosis Clinic I was taken to a gymnasium size room where one wall had leaves painted on it. I was allowed to choose a leaf to have my name put on. I understood that it was meant to be something that I should be excited about, but I just wanted to get away from the whole place.
I had a follow up appointment a few weeks later. This time my mom left work to meet me at the Shriners, my social worker (provided by the Society for Manitobans with Disabilities) had picked me up from school to take me there and to provide support for me and my mom. My Dad either didn't understand, forgot, or thought that I understood and would tell my mom that on that day I was going to be fitted for a back brace. My mom and I went into that appointment without a clue.
Stripped of all but my panties, I was told to put on a body sock- a stretchy tube that would stretch over my torso. The sock was like the leg (minus the foot) from a pair of pantyhose, and only slightly less shear. I was told to lay on a table and that I was going to have warm strips of plaster put on me, and that it wouldn't hurt. The two technicians moved my back into as much of a straight position as possible. As one held me in that position the other man laid the warm wet strips of plaster on me, from my arm pits to my pelvis. After the front was dry the mold was removed and I would be rolled over so that a cast of my back was also made. I don't remember whether I cried but I assume that I did. I was embarrassed and ashamed and angry over my lack of control. I was a child in the early stages of puberty and I had no choice about having my body exposed or touched. My response to my shame was incredible rage and tears.
As the years of attending the scoliosis clinic continued my behavior didn't change. When my Dad took me for my appointments he would drive me home and ask why I behaved the way that I did at every appointment. I didn't know how to answer him. To me it was obvious that being the only person in the room in their underwear, surrounded by strangers, spoken about as though I wasn't there, and each time being hyper-aware that I wasn't like everyone else, that I was so far from normal that I felt cheated. I felt cheated to be encumbered by a thick plastic brace that covered my whole torso. I felt cheated that I had to miss school to go to these (and other appointments).
When I began to wear my brace my clothing didn't fit anymore. I had to wear an undershirt under the brace so that my skin could breath. I wanted to hide my brace and the straps of my undershirt so I wanted to wear shirts that hid everything. The waist of my pants had to be adjustable to fit over the two hip bumps in the front that accommodated me to be able to sit down. Shopping for clothing was a nightmare. I was very small for my age, and I refused to wear clothing that was childish.
In grade seven I discovered to my horror that if I slouched the top of my brace stayed upright, stretching the back of my shirt out. While sitting on a bench in the school cafeteria the plastic panels of my brace that covered my bum would get caught on the cafeteria benches if I sat far enough back for them to hang down. I was constantly mortified, and quickly began to think about how I was sitting, to make sure my brace wasn't as noticeable.
The rights of passage when girls begin to wear bra's was delayed for me. My brace was hard and kept everything confined. In the summer I would still have to wear an undershirt, and the thick brace and then a shirt over top. There were two summers where we had heat-waves. I ended up with a heat rash each time.I was supposed to wear my brace 23 hours a day. I just remember undoing the velcro straps on both sides of the brace and the immediate sense of relief from the constraints, but also the itchiness that was even worse when my skin was finally exposed to fresh air. I scratched so hard and for so long that for years that area of my stomach had less pigmentation than the rest of my skin.
One of those summers my mom was home because she had been laid off. We had no air conditioning to keep the house cool and one week it became so hot that we decided together to spend our milk money for the week on two movies instead. The Park Theatre was in walking distance from our house. We were elated at our decision to cool off in the dark theatre. We chose movies over milk and that memory is still a good one for us.
As the years passed I wore my brace less and less. No one could make me wear it. I was the last one to leave the house everyday and the first one home (from school). It was my fault (although looking back now I realize that it wasn't anyone's fault) for not wearing it. It was hot, it was cumbersome, it was hard to get enough air in my lungs to play the flute in my band class. Eventually, it also became more difficult to walk when I wore my brace and that was the last straw for me. When I was 16 years old the doctors x-rayed my growth plate spaces in my wrists and decided that I was nearly finished growing and I no longer had to wear my brace.
For the next two decades I would dream that I couldn't find my brace and that I wanted to put it back on...
The one positive that happened when I began to wear a brace was that my back stopped hurting.
Now I am a forty-one year old woman with two children. I hunched down to breastfeed both of my children for the first year of their lives. My arms weren't strong enough to hold them up for long, so I began to lean over. As I entered my mid-thirties I also began to spend a lot of time painting. Sometimes I stood to paint, but no matter how I painted I was always hunched over to work on the details.
Finally, almost three years ago I began to have muscle spasms in my back, neck, jaw and shoulders. It was always worse when I bent my neck down or to the side, or when I scrubbed something while cleaning the house. Over the past year the spasms have grown into daily presence. My muscles are trying to hold my body together, adjusting to the curves of my spine and the distortion of my ribs and the fact that to hold me head straight my neck is pushing against the direction of the rest of my spine to stay vertical.
Do I wish that I had worn my brace for 23 hours a day like I was supposed to? Absolutely. Would I have done it any differently knowing what I know now. Probably not.
I cannot get rid of it.
During the summer holiday between 5th and 6th grade, I spent a lot of time sitting. I sat and watched t.v.. I sat and drew pictures. I sat and sewed. I sat alone waiting for my mom to come home from work each day.
Sometimes I played with friends, and I a few times that summer took the greyhound bus to a town in Ontario to stay at my grandparents cottage or to visit my aunt.
But what I did most of all was sit at home. At some point that summer I began to notice that my back hurt when I sat for too long. I was 11 years old and I didn't think to tell anyone about it.
I entered grade 6 and sometime in those first few months of school I went for an appointment at the local Shriner's Rehabilition Centre for Children. My Dad picked me up from school to take me to my appointment. Honestly, I didn't hear much of what the doctor's were saying. I was angry about missing the rest of school that day and I was anxious, because when my Dad and I arrived at the reception desk I was told to go to one of the changing rooms, take everything but my underwear off and put on one of the terry-cloth robes hanging inside the changing room. For the next four or five years of check-ups at the Shriner's I would go to the reception to check-in, and then go to a changing room, strip down to the bare essentials and choose one of the many multicoloured striped robes.They were all too big for me.
The receptionist at the clinic was this lovely older lady named Mrs. Honeybun(? honey something...). Whenever she got up from her desk the first thing that was obvious was that her back was extremely deformed. Her back had a huge hump that looked like she was carrying an ant hill on her back. Her body twisted down and towards the right and her head was in an incredibly awkward position as she walked. I had no idea why her back was that way...I thought at first that she had Spina Bifida, like a girl that I had met in grade 1. I had met that girl while we were both in the hospital waiting for surgery. She was older than me. Her mother worked at a publishing house so we read a lot of books the night before our operations. She showed me her back. It looked raw because it was so full of scars. By then she had had over 20 surgeries, and her back was a huge bulging mass. So, I thought that maybe Mrs. Honeybun had the same disease.
After changing into a robe I would sit in the waiting room with all of the other kids and parents until it was time to see the Orthopedic Specialist. While all of the kids and parents sat waiting to be called for their appointment, we would stare up at the t.v., which was bolted high up on the wall so that everyone had to crane their necks to see it. There didn't seem to be cable so the channels were few and fuzzy.
Walking in to the examination theatre for the first time I had no idea what to expect or why I was there. Maybe my Dad didn't either. Besides, I had been probed and prodded by specialist since I was born, so I never thought to ask why I had another doctor's appointment. It was just the way that life was.
The exam room had a curved wall at the back, the walls perpendicular were angled out. To my horror a group of medical students came from a hallway that curved around all of the rooms, pulled back the curtain and without asking it it was alright with me to have a large group of med. students observe (stare) me throughout my exam.
My doctor would begin to provide a brief medical history about my congenital defect, my inability to run or walk up stairs without using my arms to pull myself up holding onto a railing, how I had had a cleft pallet repair in grade 1, that I had had muscle biopsies, the first one when I was two years old and the next one when I was five or six. He would go on to say that the biopsies and the ECG's were suggestive of a form of Spinal Muscular Atrophy.(back then there wasn't genetic testing like there is now).
Next would come the dog and pony show where I had to do strength tests for each doctor. I was told to squeeze their fingers as hard as I could, to push their hands away, to pull their hands to me, to sit on the floor and try to get back up. Then they would discuss what number my strength (or weakness) level for each area of my body was. They they would also test my reflexes. I had watched enough Flintstones episodes to know that Fred always kicked his leg up when the doctor hit his knee. So when the doctors did the same to me I would kick my leg up too. In reality my body didn't respond. I had no reflexes. I did however have physical sensations when the doctor would run the metal end of the reflex hammer (?) up my foot.
During medical exams at almost any type of appointment I would also have to get off of the examination table and walk across the room, back and forth, back and forth while the doctors would talk to each other about my waddling gate, and the tightness of my achilles tendons that made me walk on my tip-toes. I would have to bend over too. The doctors would look at my back, run their fingers down my spine.
During that first appointment I had x-rays taken of my back. I remember that there was a sign in the radiology waiting room that said that I should tell the doctor if I was pregnant or thought that I might be pregnant. As an anxious adolescent that sign caused me to become even more anxious. What if I was pregnant from a toilet seat?! Yes, the likelihood was slim, but still, what if?
At some point during that first afternoon at the Shriner's Scoliosis Clinic I was taken to a gymnasium size room where one wall had leaves painted on it. I was allowed to choose a leaf to have my name put on. I understood that it was meant to be something that I should be excited about, but I just wanted to get away from the whole place.
I had a follow up appointment a few weeks later. This time my mom left work to meet me at the Shriners, my social worker (provided by the Society for Manitobans with Disabilities) had picked me up from school to take me there and to provide support for me and my mom. My Dad either didn't understand, forgot, or thought that I understood and would tell my mom that on that day I was going to be fitted for a back brace. My mom and I went into that appointment without a clue.
Stripped of all but my panties, I was told to put on a body sock- a stretchy tube that would stretch over my torso. The sock was like the leg (minus the foot) from a pair of pantyhose, and only slightly less shear. I was told to lay on a table and that I was going to have warm strips of plaster put on me, and that it wouldn't hurt. The two technicians moved my back into as much of a straight position as possible. As one held me in that position the other man laid the warm wet strips of plaster on me, from my arm pits to my pelvis. After the front was dry the mold was removed and I would be rolled over so that a cast of my back was also made. I don't remember whether I cried but I assume that I did. I was embarrassed and ashamed and angry over my lack of control. I was a child in the early stages of puberty and I had no choice about having my body exposed or touched. My response to my shame was incredible rage and tears.
As the years of attending the scoliosis clinic continued my behavior didn't change. When my Dad took me for my appointments he would drive me home and ask why I behaved the way that I did at every appointment. I didn't know how to answer him. To me it was obvious that being the only person in the room in their underwear, surrounded by strangers, spoken about as though I wasn't there, and each time being hyper-aware that I wasn't like everyone else, that I was so far from normal that I felt cheated. I felt cheated to be encumbered by a thick plastic brace that covered my whole torso. I felt cheated that I had to miss school to go to these (and other appointments).
When I began to wear my brace my clothing didn't fit anymore. I had to wear an undershirt under the brace so that my skin could breath. I wanted to hide my brace and the straps of my undershirt so I wanted to wear shirts that hid everything. The waist of my pants had to be adjustable to fit over the two hip bumps in the front that accommodated me to be able to sit down. Shopping for clothing was a nightmare. I was very small for my age, and I refused to wear clothing that was childish.
In grade seven I discovered to my horror that if I slouched the top of my brace stayed upright, stretching the back of my shirt out. While sitting on a bench in the school cafeteria the plastic panels of my brace that covered my bum would get caught on the cafeteria benches if I sat far enough back for them to hang down. I was constantly mortified, and quickly began to think about how I was sitting, to make sure my brace wasn't as noticeable.
The rights of passage when girls begin to wear bra's was delayed for me. My brace was hard and kept everything confined. In the summer I would still have to wear an undershirt, and the thick brace and then a shirt over top. There were two summers where we had heat-waves. I ended up with a heat rash each time.I was supposed to wear my brace 23 hours a day. I just remember undoing the velcro straps on both sides of the brace and the immediate sense of relief from the constraints, but also the itchiness that was even worse when my skin was finally exposed to fresh air. I scratched so hard and for so long that for years that area of my stomach had less pigmentation than the rest of my skin.
One of those summers my mom was home because she had been laid off. We had no air conditioning to keep the house cool and one week it became so hot that we decided together to spend our milk money for the week on two movies instead. The Park Theatre was in walking distance from our house. We were elated at our decision to cool off in the dark theatre. We chose movies over milk and that memory is still a good one for us.
As the years passed I wore my brace less and less. No one could make me wear it. I was the last one to leave the house everyday and the first one home (from school). It was my fault (although looking back now I realize that it wasn't anyone's fault) for not wearing it. It was hot, it was cumbersome, it was hard to get enough air in my lungs to play the flute in my band class. Eventually, it also became more difficult to walk when I wore my brace and that was the last straw for me. When I was 16 years old the doctors x-rayed my growth plate spaces in my wrists and decided that I was nearly finished growing and I no longer had to wear my brace.
For the next two decades I would dream that I couldn't find my brace and that I wanted to put it back on...
The one positive that happened when I began to wear a brace was that my back stopped hurting.
Now I am a forty-one year old woman with two children. I hunched down to breastfeed both of my children for the first year of their lives. My arms weren't strong enough to hold them up for long, so I began to lean over. As I entered my mid-thirties I also began to spend a lot of time painting. Sometimes I stood to paint, but no matter how I painted I was always hunched over to work on the details.
Finally, almost three years ago I began to have muscle spasms in my back, neck, jaw and shoulders. It was always worse when I bent my neck down or to the side, or when I scrubbed something while cleaning the house. Over the past year the spasms have grown into daily presence. My muscles are trying to hold my body together, adjusting to the curves of my spine and the distortion of my ribs and the fact that to hold me head straight my neck is pushing against the direction of the rest of my spine to stay vertical.
Do I wish that I had worn my brace for 23 hours a day like I was supposed to? Absolutely. Would I have done it any differently knowing what I know now. Probably not.
Thursday, December 9, 2010
What century is this?
I have spent hours on the phone trying to organize the zoning of a handicap parking space across the street from my children's school. I have also decided to request a handicap parking space be placed on the street in front of my house. I finally realized that I can no longer manage to park my car on my own street if I can't park where the boulevard has been shoveled. Trying to walk through shin high snow means subjecting myself each time to the possibility of falling and then having to crawl the rest of the way home because I can't get back up on my own.
Handicap parking spots take up more room than what I actually need, and I haven't wanted take space away from my neighbors to park but it has come to a point where I will have to apply to change the zoning in front of my house as I have a neighbor who moved in this past summer and she and her family don't seem to understand that by parking in front of my house. My husband shovels the boulevard in front of our house. She has unknowingly created a situation that causes me frustration and anxiety each time I come home because I am convinced that there won't be anywhere accessible to park where I can get up the curb without trying to climb a mound of snow.
This realization came a few week ago when the City announced that it would be sending out snow plows to clear the residential streets, which means that there is a parking ban between certain hours. That evening my neighbors van was parked in front of my house and unfortunately the bulldozers came early. The parking ban wasn't until midnight but the bulldozers started early. They plowed around my neighbors van and in doing so they left a huge mound of snow all around her vehicle. She was able to drive through it and I was also able to drive through it too.
But because of that mound of snow I now struggle to get up and out of the drivers seat because the ground is elevated where I step out of the car. I have to lean my head against the side of the door to push and pull myself into a standing position. This is a new problem and I have realized that I am finding it harder to do a lot of the simple things that able bodied people wouldn't give a thought to.
And now here is where the by-laws, and access policies in my City suck the big one. After putting in an application for the two handicap parking spots, one for my children's school and one for the front of my house, I was phoned by someone working for City Parking to discuss applying for a loading zone. I said that there must be some mistake as I don't need a loading zone, I want to be able to park at my children's school so that I can continue to volunteer there occasionally. I want to park in front of my house where I can walk the shortest distance, especially in the winter when it is bitterly cold, and where even a gust of winds can blow me over.
Unfortunately a handicap loading zone must be implemented for a certain length of time before an actual parking spot will be considered. As Henry, the nice fellow from the City informed me that if I had a loading zone in front of my house then I would be able to make brief stops at home and then go and drive somewhere multiple times throughout the day in order to avoid being ticketed for parking too long in a loading zone in front of my house.
Of course it doesn't make any sense at all. The purpose of a handicap loading zone is for people with disabilities who are picked up and dropped off by either Handi-transit or family and friends.
There seems to be no comprehension of the realities and complexities of persons with disabilities within any of the government departments that I have dealt with so far. The idea that every person with a disability is chauffeured from one place to another is completely unrealistic and profoundly sad, at least to me, because the right to equal access and opportunities is legislated and yet it isn't enforced.
What happens when the main caregiver of a family is the person with a disability? Aside from driving my children to school, and lessons and to friends house, she is also likely to be the one to work at home for the most hours out of everyone in the household. I clean the house, prepare the breakfasts, lunches and dinners (although admittedly I try to avoid making dinner when ever possible), puts away every one's laundry, works on one or two volunteer committees, schedules doctors and dental appointments for the children and herself. Especially for herself, since she has a disability. And then what if she also has an art practice, as in a whole other job, actually a profession that she also needs to work on in between everything else?
So, in what way would a loading zone work for me?
And yet the rule is that before a handicap parking space can be implemented a handicap loading zone must be put in place first. And of course after having a loading zone for who knows how long you are informed by the Parking Overlords that you are deserving of a handicap parking space to be installed on the street in front of your very own home, you will then be allowed a four hour parking limit, in front of your house.
When I spoke with the friendly fellow, Henry, who's job it is to take care of any disability issues related to city parking I asked "Do you mean I cannot park in front of my house for a 24 hour period or 48 hour period"? No. But as Henry said "you can just go and run some errands" multiple times a day every fucking day of the year.
To be fair Henry is a nice guy and he doesn't act like your typical bureaucrat. He seems genuinely interested in finding solutions. But he has a livelihood to make and because he cannot do anything else he offers me two phone numbers. The first contact number is with the City's Street Engineer and the second is with the City's accessibility coordinator. My thinking at the time was that the Street Engineers hands would be tied until the regulations have been changed. I called the head of Accessibility for the City and I left her a message. Ten days ago.
_______________________________________________________________
Eleven days later, as the kids and I are racing around the house trying to get dressed and out the door for school, the Accessibility Coordinator phoned me! We have a good conversation, although would she didn't know that applying for handicap parking was a year and two month process, that an assessment would be made first to confirm whether or not there was a genuine need for a handicap parking space on my street or in front of my children's school and that assuming the assessment showed a need for zoning then it would be up to a year before the signage would be put in place for a handicap parking space to even exist.
I also told her that my children's school turned down my request for railings to be put up on the exterior stairs and that I was turned down because there are only three stairs and therefore the school division and in fact my entire City can continue to say no to placing railings on stairs if there is only a minimal amount.
I have a degree from the faculty of architecture in interior design, and even as a student I couldn't help wondering what the difference was between having three steps and having five steps which would then mandate that a railing be installed.
And I am still wondering what the difference is. What it comes down to is that there is no difference at all, except that someone arbitrarily decided that although a stair is a stair is a stair, a railing is probably more of a safety feature meant for keeping people from falling over the edge of a staircase as opposed to being there to also help people get up the steps.
What century is this?
Am I living in a developing nation where the challenges are so much more significantly basic such as clean water, access to medical treatment and to medication, equal rights for men and women?
Perhaps I am living in such a nation. I live in a province that does not provide clean water for everyone, does not provide equal access to a decent education and a government that only listens to people with strong voices and the energy to pursue change.
I am not equal. I am not equal because I have a disability, I am a woman, I am a mother and I have the audacity to question authority as to why we are still living in a place too racist, too cheap and too afraid of spending money to improve the quality of its people. It's so much easier to spend our citizens taxes on building bigger and better arenas and stadiums which boosts the image of our City as growing and thriving. It's easier to create public campaigns that say we have a great city and that we are tough on crime rather than making a great city and addressing the reasons why our crime rate is so high in the first place.
It is easier to build a National Human Rights museum in this City than to actually improve human rights in this City. It is so much easier to offer rhetoric than it is to solve the highest rate of child poverty in the entire country. And it is far too easy to deny human rights for people with disabilities because most of the time we are too busy trying to live our lives as best we can, picking up the pieces after each illness, each surgery, each time we are denied our right to participate in society because there is no where to park our cars, or walk up the steps, or find an entrance that is wheelchair accessible, because no one thought that signage was necessary. It's easy to over look an entire culture of people (those with disabilities) when so few have the energy and means necessary to demand something better from their city.
Handicap parking spots take up more room than what I actually need, and I haven't wanted take space away from my neighbors to park but it has come to a point where I will have to apply to change the zoning in front of my house as I have a neighbor who moved in this past summer and she and her family don't seem to understand that by parking in front of my house. My husband shovels the boulevard in front of our house. She has unknowingly created a situation that causes me frustration and anxiety each time I come home because I am convinced that there won't be anywhere accessible to park where I can get up the curb without trying to climb a mound of snow.
This realization came a few week ago when the City announced that it would be sending out snow plows to clear the residential streets, which means that there is a parking ban between certain hours. That evening my neighbors van was parked in front of my house and unfortunately the bulldozers came early. The parking ban wasn't until midnight but the bulldozers started early. They plowed around my neighbors van and in doing so they left a huge mound of snow all around her vehicle. She was able to drive through it and I was also able to drive through it too.
But because of that mound of snow I now struggle to get up and out of the drivers seat because the ground is elevated where I step out of the car. I have to lean my head against the side of the door to push and pull myself into a standing position. This is a new problem and I have realized that I am finding it harder to do a lot of the simple things that able bodied people wouldn't give a thought to.
And now here is where the by-laws, and access policies in my City suck the big one. After putting in an application for the two handicap parking spots, one for my children's school and one for the front of my house, I was phoned by someone working for City Parking to discuss applying for a loading zone. I said that there must be some mistake as I don't need a loading zone, I want to be able to park at my children's school so that I can continue to volunteer there occasionally. I want to park in front of my house where I can walk the shortest distance, especially in the winter when it is bitterly cold, and where even a gust of winds can blow me over.
Unfortunately a handicap loading zone must be implemented for a certain length of time before an actual parking spot will be considered. As Henry, the nice fellow from the City informed me that if I had a loading zone in front of my house then I would be able to make brief stops at home and then go and drive somewhere multiple times throughout the day in order to avoid being ticketed for parking too long in a loading zone in front of my house.
Of course it doesn't make any sense at all. The purpose of a handicap loading zone is for people with disabilities who are picked up and dropped off by either Handi-transit or family and friends.
There seems to be no comprehension of the realities and complexities of persons with disabilities within any of the government departments that I have dealt with so far. The idea that every person with a disability is chauffeured from one place to another is completely unrealistic and profoundly sad, at least to me, because the right to equal access and opportunities is legislated and yet it isn't enforced.
What happens when the main caregiver of a family is the person with a disability? Aside from driving my children to school, and lessons and to friends house, she is also likely to be the one to work at home for the most hours out of everyone in the household. I clean the house, prepare the breakfasts, lunches and dinners (although admittedly I try to avoid making dinner when ever possible), puts away every one's laundry, works on one or two volunteer committees, schedules doctors and dental appointments for the children and herself. Especially for herself, since she has a disability. And then what if she also has an art practice, as in a whole other job, actually a profession that she also needs to work on in between everything else?
So, in what way would a loading zone work for me?
And yet the rule is that before a handicap parking space can be implemented a handicap loading zone must be put in place first. And of course after having a loading zone for who knows how long you are informed by the Parking Overlords that you are deserving of a handicap parking space to be installed on the street in front of your very own home, you will then be allowed a four hour parking limit, in front of your house.
When I spoke with the friendly fellow, Henry, who's job it is to take care of any disability issues related to city parking I asked "Do you mean I cannot park in front of my house for a 24 hour period or 48 hour period"? No. But as Henry said "you can just go and run some errands" multiple times a day every fucking day of the year.
To be fair Henry is a nice guy and he doesn't act like your typical bureaucrat. He seems genuinely interested in finding solutions. But he has a livelihood to make and because he cannot do anything else he offers me two phone numbers. The first contact number is with the City's Street Engineer and the second is with the City's accessibility coordinator. My thinking at the time was that the Street Engineers hands would be tied until the regulations have been changed. I called the head of Accessibility for the City and I left her a message. Ten days ago.
_______________________________________________________________
Eleven days later, as the kids and I are racing around the house trying to get dressed and out the door for school, the Accessibility Coordinator phoned me! We have a good conversation, although would she didn't know that applying for handicap parking was a year and two month process, that an assessment would be made first to confirm whether or not there was a genuine need for a handicap parking space on my street or in front of my children's school and that assuming the assessment showed a need for zoning then it would be up to a year before the signage would be put in place for a handicap parking space to even exist.
I also told her that my children's school turned down my request for railings to be put up on the exterior stairs and that I was turned down because there are only three stairs and therefore the school division and in fact my entire City can continue to say no to placing railings on stairs if there is only a minimal amount.
I have a degree from the faculty of architecture in interior design, and even as a student I couldn't help wondering what the difference was between having three steps and having five steps which would then mandate that a railing be installed.
And I am still wondering what the difference is. What it comes down to is that there is no difference at all, except that someone arbitrarily decided that although a stair is a stair is a stair, a railing is probably more of a safety feature meant for keeping people from falling over the edge of a staircase as opposed to being there to also help people get up the steps.
What century is this?
Am I living in a developing nation where the challenges are so much more significantly basic such as clean water, access to medical treatment and to medication, equal rights for men and women?
Perhaps I am living in such a nation. I live in a province that does not provide clean water for everyone, does not provide equal access to a decent education and a government that only listens to people with strong voices and the energy to pursue change.
I am not equal. I am not equal because I have a disability, I am a woman, I am a mother and I have the audacity to question authority as to why we are still living in a place too racist, too cheap and too afraid of spending money to improve the quality of its people. It's so much easier to spend our citizens taxes on building bigger and better arenas and stadiums which boosts the image of our City as growing and thriving. It's easier to create public campaigns that say we have a great city and that we are tough on crime rather than making a great city and addressing the reasons why our crime rate is so high in the first place.
It is easier to build a National Human Rights museum in this City than to actually improve human rights in this City. It is so much easier to offer rhetoric than it is to solve the highest rate of child poverty in the entire country. And it is far too easy to deny human rights for people with disabilities because most of the time we are too busy trying to live our lives as best we can, picking up the pieces after each illness, each surgery, each time we are denied our right to participate in society because there is no where to park our cars, or walk up the steps, or find an entrance that is wheelchair accessible, because no one thought that signage was necessary. It's easy to over look an entire culture of people (those with disabilities) when so few have the energy and means necessary to demand something better from their city.
Wednesday, December 8, 2010
The first day of winter
Written 4 weeks ago...
It has been snowing since yesterday. Non-stop. My children just had to go out to play in the fresh snow this morning. For my daughter, who is 5, it is like the first winter for her. She doesn't remember how winter works. The kids had to come back into the house, strip off their wet snow pants, coats, mitts and boots so that they could eat their breakfast and strip off the pajamas that they wore outside underneath their outdoor layers.
Today is the beginning of our winter schedule, which involves doing everything earlier because there are so many things to put on before we go outside and because once we get to the car we have to brush the snow off all of the windows and sometimes off of the roof of the car so that it doesn't slide down onto the windshield while I'm driving the kids to school. Today is the beginning of waiting for the car to warm up. Today is the beginning of pulling off my gloves so that I can buckle my daughter up into her booster seat. Fortunately, my son can buckle himself in. My son is 7 going on 8. While I am buckling my daughter up my son starts the car so that it has a chance for the heater to do it's job of warming us up before we get to school.
As we began our short drive to school my daughter asked if today was the first day of winter, and while I have explained to her many times already that there is an official date for winter, today I just say that yes, I guess it is the first day of winter. My daughter is thrilled by the prospect of it snowing everyday now that it is really WINTER. I tell her that just because it's winter it does not mean that it will snow everyday (at least I hope not). I tell her that when it is summer time it isn't sunny every single day, that sometimes it rains and that all 4 seasons can be full of surprises.
We arrive at school a few minutes late (as usual), the snow is the puffy type that makes driving a car more like steering a boat. I am relieved to see that the handicap parking spot across from the school is available for me and I park and hang up my parking permit.
I have begun to walk the children across the street, but as of three weeks ago my son now has the job of taking my daughter from the school-side curb, up the stairs (which has no railing), into the school and then down the stairs into her classroom. My son gets a loonie (one dollar) for each day that he does his job and my daughter gets a loonie for her part in cooperating.
Today was the first day that I have had to walk in the snow this year. I only had to walk about 12 feet with the kids to get them across the street. We said our goodbyes, repeated our daily assurances that I would pick them up after school and then they were on their way.
I turned around to return to the car, one step, two step, three step, and then I fell flat on my ass. And so I sat in the middle of the snowy road, my cane laying about a foot away from me, wondering how long I would be sitting in the middle of the road. Fortunately two parents see me, and one of the dads asks if I need help. I say "yes", and he and the other dad came to help. One of the dads has a daughter in my son's class. So while we don't know each others names he has now come to my rescue, lifting my small 90 pound body up as though I weighed nothing. The other dad handed me my cane and made sure that I got to my car without further incident.
This is the first time in three years of taking my children to school that I have fallen on the road. I gave fallen on the sidewalk a few times but was able to crawl to a pile of snow or some stairs where I could push myself up. Today was the first time I felt well and truly screwed.
And so begins a new winter. I have been dreading it since summer! And yet despite knowing what winter brings for me, knowing what I am in for, and having experienced it for decades tears come to my eyes because each fall brings a very fresh and yet familiar feeling of frustration, anger and the whiny thought "what the fuck am I going to do about this, I can't do this for one more winter, who can do this for me?-this delivering of my children-safely to and from school 3 times each day? The thoughts of finding a new place to live is ever-present. And despite that I have yet to live anywhere but this city that I was born to.
My husband and I have spent a lot of time looking for a place to live where we can maintain or improve our standard of living, where our children can continue to benefit from a good public education, where the weather is moderate, not too hot and not too cold.
So far, our search has been implacable. I want to move somewhere culturally diverse, with a moderate climate and a strong and supportive contemporary arts community (the latter of which I have here), where it is safe to live and yet a place that is not so far that my extended family can't come and visit without causing them too much financial strain. So, it would seem that my ability to figure out how to make life a little more digestible remains intractable.
Today is the beginning of our winter schedule, which involves doing everything earlier because there are so many things to put on before we go outside and because once we get to the car we have to brush the snow off all of the windows and sometimes off of the roof of the car so that it doesn't slide down onto the windshield while I'm driving the kids to school. Today is the beginning of waiting for the car to warm up. Today is the beginning of pulling off my gloves so that I can buckle my daughter up into her booster seat. Fortunately, my son can buckle himself in. My son is 7 going on 8. While I am buckling my daughter up my son starts the car so that it has a chance for the heater to do it's job of warming us up before we get to school.
As we began our short drive to school my daughter asked if today was the first day of winter, and while I have explained to her many times already that there is an official date for winter, today I just say that yes, I guess it is the first day of winter. My daughter is thrilled by the prospect of it snowing everyday now that it is really WINTER. I tell her that just because it's winter it does not mean that it will snow everyday (at least I hope not). I tell her that when it is summer time it isn't sunny every single day, that sometimes it rains and that all 4 seasons can be full of surprises.
We arrive at school a few minutes late (as usual), the snow is the puffy type that makes driving a car more like steering a boat. I am relieved to see that the handicap parking spot across from the school is available for me and I park and hang up my parking permit.
I have begun to walk the children across the street, but as of three weeks ago my son now has the job of taking my daughter from the school-side curb, up the stairs (which has no railing), into the school and then down the stairs into her classroom. My son gets a loonie (one dollar) for each day that he does his job and my daughter gets a loonie for her part in cooperating.
Today was the first day that I have had to walk in the snow this year. I only had to walk about 12 feet with the kids to get them across the street. We said our goodbyes, repeated our daily assurances that I would pick them up after school and then they were on their way.
I turned around to return to the car, one step, two step, three step, and then I fell flat on my ass. And so I sat in the middle of the snowy road, my cane laying about a foot away from me, wondering how long I would be sitting in the middle of the road. Fortunately two parents see me, and one of the dads asks if I need help. I say "yes", and he and the other dad came to help. One of the dads has a daughter in my son's class. So while we don't know each others names he has now come to my rescue, lifting my small 90 pound body up as though I weighed nothing. The other dad handed me my cane and made sure that I got to my car without further incident.
This is the first time in three years of taking my children to school that I have fallen on the road. I gave fallen on the sidewalk a few times but was able to crawl to a pile of snow or some stairs where I could push myself up. Today was the first time I felt well and truly screwed.
And so begins a new winter. I have been dreading it since summer! And yet despite knowing what winter brings for me, knowing what I am in for, and having experienced it for decades tears come to my eyes because each fall brings a very fresh and yet familiar feeling of frustration, anger and the whiny thought "what the fuck am I going to do about this, I can't do this for one more winter, who can do this for me?-this delivering of my children-safely to and from school 3 times each day? The thoughts of finding a new place to live is ever-present. And despite that I have yet to live anywhere but this city that I was born to.
My husband and I have spent a lot of time looking for a place to live where we can maintain or improve our standard of living, where our children can continue to benefit from a good public education, where the weather is moderate, not too hot and not too cold.
So far, our search has been implacable. I want to move somewhere culturally diverse, with a moderate climate and a strong and supportive contemporary arts community (the latter of which I have here), where it is safe to live and yet a place that is not so far that my extended family can't come and visit without causing them too much financial strain. So, it would seem that my ability to figure out how to make life a little more digestible remains intractable.
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