“Progress is impossible without change, and those who cannot change their mind cannot change anything.” – George Bernard Shaw
It’s another grey windy day but at least it’s not raining. Out of boredom and, to maybe kick start an idea into my cranial star chamber, I started searching out YouTube for old TV theme songs. I came across the 1955 version of Davy Crockett. I remember wanting a raccoon cap as a kid but the real Davy Crockett was a “mountain man” turned politician. He became a peoples politician who took a stand along with some other great patriots right up to their deaths at the Alamo. What has happened to that political commitment. Anyway that was a fleeting thought meant to keep myself entertained as I hoped a spark would ignite an idea in my head, so lets go.
I find myself facing a new dilemma’s these days that is all based on that old “if I had of known then what I know now” way of thinking. I had about a dozen surgeries as a kid all with the purpose of walking without braces, new untried procedures at the time, and 4 of the 12 produced the hoped for results. One of the last major surgical procedures I underwent was a hip fusion of my left hip.
A lot of this was “new” ground for the growing speciality of orthopaedics and was a carry on from new techniques used with WW2 vets. Medically there has been a tight tie between the veterans community and the polio generation due to the advancements being made in medicine. My orthopaedic Dr. Vincent Murphy was a retired RCAF pilot and received his medical training courtesy of the military. He was a good man and played a big role in my life from age 8. He enjoyed me because, as he once put it, I had attitude and I was always up for surgery.
Polio kids were surgical try-outs for a lot of new techniques and we auditioned for surgical spots in what was called Grand Rounds. Out-patient Rounds were held every Tuesday at the Children’s Hospital but if your parents got that call for Grand Rounds it was pretty certain you were being admitted. For Rounds you stripped down for the doctor and your parents, for Grand Rounds you stripped down on an examination table in front of half a dozen doctors, another half dozen interns and maybe a dozen student nurses standing in the background taking notes. While they are discussing me like a strip loin, I’m sitting there trying to figure out if I will sign up for Monday night copper tooling or take the leather activity again. Monday nights were Arts and Craft’s night in the hospital. Continue reading “What We Don’t Know We Know…(revised)”→
When does passion become obsession? I am passionate in regards to access. I am passionate about defending the right to access that so many others have fought so hard to achieve. I am passionate about ensuring complacency or lack of historical perspective does not allow the new world of #socialmedia to create new challenges to access. You can’t build ramps to improve access in the digital world but you can build attitudes. It is attitude that is the access tool in the digital world. It was attitude that helped develop the Braille e-reader thereby opening a large component of social media to the blind. These are my passions.
I am obsessed with getting people to understand that access is about attitude. The “information age” brings a whole new challenge to access. We need to adjust our attitudes and policies to reflect the realities of today. I have concerns when one of the top universities in Canada can can make tradition sound like policy and deny reasonable accommodation as is the current case of University of Ottawa student James Lewicki is realizing. This raises the question over which direction attitudes are taking in this country. I am obsessed with making sure we never return to the attitude of 40 years ago.
I had a very good friend who had spend a lot of time in the Children’s Hospital with me when we were children. She was also a polio survivor but with greater physical loss than myself so was wheelchair dependent from the start. In the mid 70’s she got into an abusive relationship and it didn’t take him long to isolate her socially from all of us.
A strong trait of an abuser is their ability to create social isolation, out of sight, out of mind (a philosophy many levels of government adopt). A few of us did try to get her out of there however women’s emergency shelter were lucky to exist in those days let alone be wheelchair accessible. In 1978 the Calgary one wasn’t. There was no place for her to go. Continue reading “Building Social Isolation”→
So I was popping an e-mail off to a buddy over in South Korea who is about to make his annual trek back to Canuckland. I’ve known Cam for many years and try to get together during his annual treks. I was passing on the new address, contact information, etc that etiquette suggests you should when relocating. I was describing the trials and tribulations of the move and decided to describe my newest discovery, something even I took for granted based on the simple garbage chute that was at the end of the hall on every floor of the last place I lived. Here’s what I wrote. Enjoy.
“Anyway I am much closer to being settled in and just starting to discover some of the unthought of issues. No more garbage dump here at the end of the hall. No. no there are large industrial bins out back of the building with a huge emphasis on recycling. God forbid if you put cardboard in the plastic bin which, did I mention, industrial which puts them to about three feet taller than a wheelchair.
Oh yeah and to get there one must wheel down a drive-way build to take the rain down into the middle of the pavement (about a five degree angle on both sides) so no matter which direction you go one’s wheelchair is pulling you down to the middle of the alley.
And the icing on the cake is the two sets of wonderfully designed speed bumps, very effective unless you are pushing a wheelchair over what I am sure would provide a thrill to any mogul skier, on the way to, did I mention industrial size, garbage collection area.
I need to get a photographer that would be good with my video camera. There has to be a decent YouTube video here trying to balance plastics, cardboard, recycling and garbage on ones lap while navigating a wheelchair through what might be considered a challenging course to someone with that mountain biking mentality.“
Anyway I love my kitchen and hopefully will have some wall hangings up soon. Now to find a solution to the garbage!
Well it is Sunday and time to finish the adventure story. Having made all of the necessary decisions, given my notice at work (which worked out well because Medi-Chair really needed a full time person in that position) and given my notice for my condo in Calgary I began to focus on finding a place in Kelowna. I had given a good two months notice to all those affected in Calgary so I figured I had lots of time to find something in Kelowna. Of course doing this long distance and depending, in part, on my mothers involvement I figured it would be pretty straight forward. So I began checking in early August to find a place for the October 1.
Fortunately my mom has a few younger friends (actually when you are 86 most of your friends are younger) that could manage to take some phone photo’s and e-mail them to me. She does know some people who have smart phones and are use to taking pictures of their grandchildren for e-mail purposes. This came in quite handy as I was not about to drive six hours (one way) to check out apartments. With that said I am sure you will recognize how dependant I was on other peoples interpretations. I supplied my mother with a list of criteria that I was hoping could be met as closely as possible.
Some of the things I didn’t mention were things I take for granted. Things like my preference for a concrete building versus a wooden one. There are two main reasons for this: 1. you cut back on sound absorption and 2. occupant insurance is a little cheaper in concrete rather than wood. I am already experiencing the joys of the two year old above me playing bouncy ball or mom/dad playing catch me if you can but make sure you stomp your feet. I don’t believe it is done with any malice but this is the same suite that called the manager with a noise complaint on my first night here as I set up my stereo. That turned into a non-issue. When a place is pretty empty echoes happen!
Carpets were something that were never really discussed except to say I prefer carpet to linoleum. With that said I never thought to mention what kind of carpet. This is something many people don’t put a lot of thought into when choosing a place to live but for a wheelchair it does make a difference. One of the issues in the 70’s was shag carpets. They are a bitch to push a wheelchair around on. My preference is a good strong flat weave which is what I wound up with.
The first apartment I found that I really liked because it was a quite affordable two bedroom. That extra bedroom was a bonus which is why I contacted this person. It was all done through e-mail and after a couple of exchanges she decided she “couldn’t in good conscience rent a 4th floor condo to someone in a wheelchair”. Her rational was fire danger. Now first of all it is highly illegal to refuse to rent to someone because of a wheelchair. If I were so inclined I could lodge a human rights complaint but that is no way to start off a landlord/tenant relationship. Besides I thought these battles had been dealt with 30 years ago. Apparently I’m wrong.
The second component of her concern (and I have no reason to believe she had anything but good intentions) was the ability (or inability) for me to get out in the event of a fire. What she didn’t realize was early in my career with the BC government I worked in the Office of the Fire Commissioner and that any place with a “city” status had to have at least one fire truck with the ability to reach eight floors. Again I will only tackle so many battles at a time and this particular one just didn’t match up to my timing. No sense in starting off a renters arrangement with a potentially hostile landlord.
Again there are differing understandings of what “accessible” means so after three other debacles I finally settled, as it turns out, on the one I am sitting in. Two main selling points here considering I was about to accept a place unseen. My mother knows how important kitchens are to me and this kitchen is huge. I love to cook and I am predisposed to that prairie farm thinking where the hub of life is the kitchen. As I said this kitchen is huge. lots of cupboards, a large dining area, living room area and bedroom allowing for a lot of wheeling room. I can do a 360 degree turn anywhere in this place except the bathroom and walk-in closet. Yes I have a walk-in (actually through) closet that connects my bedroom to the bathroom. With that said my wheelchair won’t fit through the doorway so its a kneel through closet now.
This is a panoramic view of the living room and dining area taken from the doorway to my patio. Yes I have a patio that is easily accessible however fire regulations do not allow bbq’s. The kitchen would be to the right of the dining area. You can just catch the edge of my TV which is the wall separating my bedroom/bathroom area from the rest of this place. It’s a corner suite with the fire exit stairs on the opposite side of me so no neighbours on either wall, just above me.
October 24 my new sofa arrives and will go where those two single chairs are so people will have places to sit. So for now welcome to my new home and realize it was rented sight unseen except for a few camera phone shots. One thing I forgot to mention, in-suite laundry side by sides in a room large enough to do a wheelchair square dance.
As previously reported I have just made another move back to the province I had once left. There are some unique issues when moving while confined to a wheelchair and it takes a fair amount of planning. The first major issue to overcome is FINDING that one wheelchair accessible place that will work for you. I experienced this when I moved to Victoria, again when I moved back to Calgary and yet this time when looking in Kelowna. I am sure I could find them if I wanted to, after all research is my life, but I am not sure what standards are required to advertise a place as wheelchair accessible. I have come to recognize that wheelchair “friendly” tends to be more accurate than accessible.
The fact that there was an elevator is my last place constituted wheelchair access. Close to 70% of places on the market for rent are eliminated almost at once for someone using a wheelchair. Between basement suites, townhouses that are traditionally full of stairs, based on building code any building under four stories don’t require elevators and the list goes on. And if you are on some government based support program like the Alberta Income Support for the Handicapped (AISH) in Alberta or BC’s Disability Benefits 2 (DB2) that list gets much smaller. Fortunately I have always been relatively self sufficient and never had to rely on any of these types of programs.
It is my opinion, and no insult meant to the many people I know in this situation, these well meaning programs are poverty traps. Once you are on them it is very difficult to get off. No one that I am aware of stay on these programs because of the poverty level income they receive but the medical coverage that they need. My new wheelchair for example cost close to $6500 with all the upgrades that makes it work for me. A person with a physical disability, I can only speak to that because I don’t know what it is like to live with a another form of disability, can have extensive medically related costs. Skin creams to avoid pressure sores, catheter equipment, clothes designed for wheelchair use, gloves, wheelchair maintenance and the list goes on without even touching prescriptions. Anyway this is all fodder for a future story but you get the picture.
When I moved down from the Cowichan Valley to Victoria I checked with the city program involving accessible housing. There were 2700 people on the list ahead of me so I took an apartment that worked BEST for me. The bathroom was not accessible but as an old polio survivor I have the luxury of shuffling around a little bit on my knees. When I was a child my mother would often get teased by her friends about having the shiniest floors on the block because I scooted all around the house on my hands and knees. So an inaccessible bathroom is not uncommon to me. To the average para or quad that option is not an option. I was even able to haul my ass over the large lip onto my deck every now and then but without the wheelchair. I had a beautiful ocean view and could watch the cruise ships pull in and out of the harbour. Was there a wheelchair designed parking spot? No but they did arrange parking so I had the last spot in one row which allowed me to open my door wide enough to get my wheelchair out.
Moved to Calgary and similar situation. The City’s handicapped housing program, minimum three year waiting list. The women I talked with told me “we only have a certain number and these people just never move”. First of all I detest the title “these people” in any situation and second, use your critical thinking skills madam, where will they move to?
I looked at a number of apartments all advertised as wheelchair accessible. They all had an automatic door opener and an elevator. However once you got into the suite you were faced with hallways that wouldn’t allow a sharp turn into the bedroom, one down. Apartment two had a lay out that dealt with the need for sharp turns by eliminating long hallways but you had to back out of the kitchen area. It wasn’t wide enough to turn a wheelchair around in and it wasn’t like a walk through galley kitchen. The other issue with the kitchen was the placement of appliances. To access the fridge I would have to back into the kitchen since the fridge was the very first appliance and the fridge door swung away from the kitchen.
However by that point I needed a place to live and quickly. I was staying with my brother and his family in a home that was relatively accessible once I got into it but the challenge was getting into it. The condo I eventually settled on worked best but again wasn’t perfect. It was really more than I could afford at that particular moment but one thing about living with a disability that you get use to is paying for little things that others take for granted.
So I took this condo advertised as wheelchair accessible. It was on the 12th floor and had a great view of downtown Calgary. Unfortunately I am passed the days of being able to walk a lot on my knees so I reserve as much as that ability for bathrooms and emergencies. I purchased furniture that would also double as cupboards. The cupboards in this place were minimal and cupboards over fridge/stoves are useless to me. One could only reach so high. The kitchen was a walk through galley however no turning radius for my wheelchair.
I was also surprised, since this building was built a number of years after the access component to the building code was added, lacked any disabled wide parking stalls underground. The property management company did work with me on that one and we came to a semi-workable arrangement. That became my home for the next six years and, in all honesty, I thought my next move would be into some sort of supported old folks living arrangement. Boy was I in for a surprise!
Moving to Kelowna raised the whole issue of finding that right place to call home. So now I have to sweat it out again and begin the search anew. More on that story tomorrow. This one has gone on long enough and it is no “Gone With the Wind”.
Check back tomorrow for the ongoing adventures of the poster child!
Nothing is ever straight forward in the world of disability but when those programs reportedly there to make life easier for a person with a disability don’t you can get upset quite easily. Why do things in the disability world have to be so complicated all of the time? My answer: we are a good product and provide jobs for millions of people. People from care givers to support services and bureaucrats. You talk to many of them and we represent employment. The employment I hate creating is for some bureaucrat who likes to spend their day creating policy barriers.
I mentioned in one of my recent posts that I am currently debating my need for a new wheelchair with the provincial body that supplies that service. Debating is a very polite way of framing it but I am trying to be open minded about this. The debate is very focused on what should matter; client need or service provider’s policy? According to their website “The Alberta Aids to Daily Living (AADL) program helps Albertans with a long-term disability, chronic illness or terminal illness to maintain their independence at home, in lodges or group homes by providing financial assistance to buy medical equipment and supplies”. Sounds pretty straight forward one would think.
My current chair has certainly seen better days. However since breaking my hip in the fall of 2011 I just don’t sit the way I use to. So not only am I not comfortable but my chair has developed so many squeaks and groans that I have lost trust in its structural reliability. And when you don’t have that trust in your only means of mobility it starts to have an impact on ones physical well being. Not having that trust affects how far from home I am prepared to wheel and lately that hasn’t been far. That means less exercise and all the pleasantries that go along with lack of exercise.
Fully realizing this was happening I began the process last August to make application to the Alberta Aids to Daily Living (AADL) program for a new wheelchair. I know how bureaucratic any government program can be and having dealt with AADL before I knew it would take a while. On August 7, 2012 I got onto the Yellow Brick Road of government bureaucracy to begin the wonderful adventure of obtaining a new wheelchair. Now I may be sounding a little facetious but I have had to substantiate my disability for over fifty years and I cannot get the powers that be to understand the results of my polio are never going to go away.
The best example of this is these disabled parking placards that everybody seems to assume gets you the best parking spots. They are a nice thing to have but every five years I have to go back to my doctor (valuable medical time that could probably be used in a more productive way), get a CURRENT letter from him verifying my disability (at a cost to me of $50, his office considers it a non-medical form) and then take it to the government office where I can renew my parking placard. The fact that I roll into their office in my wheelchair, have a drivers licence with a hand control restriction and survived polio when I was three years old is not enough proof that I actually meet the criteria for said pass. This same process is involved in proving my need for a new wheelchair.
I do need to add a qualifier here to put this need into perspective; the new wheelchair has to meet my specific needs which is an important differential. This is a piece of equipment I will be sitting in 24/7 for at least the next five years. If you could only have one pair of shoes that have to last you for the next five years are you hanging out at the sales table? I think not. I require a wheelchair that meets my body needs as close to perfectly as possible, not some chair that was on the sales floor and is “close” to what I may need.
I should point out here that by the time the chair is basically build to the specifications supplied by the authorizing Occupational Therapist we are looking at about $7000. You can’t convince me that they COST that much to make but that’s how much they cost to purchase. Now here’s where the ink gets redder, my needs fall under a category D chair and “Category D” has its own rules. But to keep it simple under category D the program will cover $3500 of the cost and I cover the rest. As well, under Category D, I retain ownership of the chair.
Now here’s something many of you may not know. If AADL purchases or assists with the purchase THEY, not you, are the owners of that equipment. I only mention that so you can recognize the irony of a program supposedly there to help build independent living can actually trap you in the province. You can’t move out of the province without returning the equipment, as in a wheelchair, to AADL. I have never seen a situation where you need a mobility aid in one province but can be very ambulatory in another. I can personally attest to this as I have lived in five provinces and have experienced the same mobility issues in each province. With a Category D I can go where ever I like and keep my equipment.
Close to the end of September the OT came to my apartment to do a complete assessment. She wanted to see what kind of environment the chair would be being used in. She measured my doorway widths, watched how I transferred in and out of my chair as well which situations I would use various transfer techniques in. Transferring into my recliner is a different process than transferring into my car as an example. Anyway the OT did everything she needed to, using all of the skills and education she had acquired as a professional occupational therapist. Based on her level of knowledge she made the determination that I did need a new chair for safety and health reasons.
Now I was quite pleased as it can often take three months or more to see someone for this type of assessment. So having somebody see me in less than eight weeks was a bonus and she did a very good job.
Turns out her assessment meant nothing. Due to their own policy Class D chairs can only be purchased every seven years (mine is just coming up to six years old), AADL turned me down. Stay tuned!