“There are things known and there are things unknown, and in between are the doors of perception” – Aldous Huxley
There are times you can only scratch your head and wonder if this is really life or am I just having a bad dream. Reality and perception are like that. The past three days have been a lesson in why I am becoming increasingly hermit in nature, it’s not just physical ability. I’ve just spend three days finding reminders.
We had some great weather moments over the weekend which really encouraged me to get out and enjoy. I had a few things that really needed doing so it was an all out type of weekend. Things like re-stocking the pantry (personal space is always interesting in public gathering places), I had signed up to attend a public political event and I wanted to make sure I exercised my vote at an advanced poll. So physically I was busy (kept count and did the chair transfer into or out of my car 48 times) so today I am big pharma’s happiest customer. Today has been a four pill day…
My adventure at the advanced poll was another head scratcher and left me wondering just how little common sense there is out there. My advanced poll was at a local elementary school. It was a Sunday so when I arrived at the polling station there were lots of available parking but no identifiable disabled parking. Since the poll seemed pretty steady (about 30 cars in the lot) I took an end spot just to make sure I wouldn’t be blocked in when I got back. I do that to avoid the possibility of coming back to my car to find someone parked so close I can’t open my door wide enough to reload my chair.
While I’m unloading my wheelchair in my usual fashion I noticed a women wearing an Elections BC lanyard around her neck. She was watching me closely and I checked that off to someone watching to make sure I didn’t miss my chair as I jumped from my drivers seat.
As I wheeled towards the door to go into the poll she approached me to tell me about the “curb side” vote. I had never heard of this but according to her one of the services now is to bring anyone with mobility issues all of the paperwork to their vehicle and cast your vote that way. I’ve been voting for a lot of years and that is actually a good idea but it would be nice to make people aware of this. I consider myself relatively well informed so I was surprised by this fortuitous piece of information. At the same time, now you tell me. You watched me unloading my chair so wouldn’t 20 seconds of common sense indicate you should say “I should make him aware”. Oh well the fight goes on… Continue reading “Now You Tell Me…”→
“The ultimate test of man’s conscience may be his willingness to sacrifice something today for future generations whose words of thanks will not be heard.” – Gaylord Nelson
Not sure what woke me up this morning, the construction, the heavy pounding of the rain (will this winter ever come to an end) or the sharp pulse moving up and down my arms like a 12 string classical guitar with all 12 strings out of tune. Today is definitely a three pill day, narcotics be damned. Growing up in a hospital you adopt the philosophy of better living through chemistry early. On the upside I’m waking up.
Got a lucky break late morning with a few hours of sunshine so used the time wisely and hit the Save-On. So I am well stocked in anticipation of the next four days of rain. I have started paying more attention to the weather reports and less attention to the news (with the exception of the BC election) these days. I know during the rainy time my body behaves like a badly tuned and out of sync garage band. But again at least I woke up which is more than two good friends did in the last week. Rest in peace Liz and Lance, your time is done and your suffering has past. My condolences to their loved ones.
I have been putting a lot of thought into the CBC story I had shared recently. I put so much thought into it I contacted the author, CBC’s Donna Carreiro. More on that contact to come…meanwhile her article actually woke me up. I started thinking of my own situation and did a bit of my own research. My descent into wheelchair dependence was gradual with the biggest part happening after moving to BC. A whole new set of medical professionals to get to know and me working from the assumption that the fallout of polio was understood. For the record, I do not have polio. Polio is a virus that runs its course, does its damage and then it’s gone. The damage done is the outcome of polio, the residual is not polio.
No medical professional ever mentioned post-polio to me. I was aware of it but with limited knowledge. The closes medical rational I ever received for increasing wheelchair dependence plus symptoms like quicker to fatigue was the “strains of a life time of walking on crutches”.
The idea that my medical team (I call it a team but it’s really a pathway of referrals so that health “administration” can call itself a system) wouldn’t understand polio never entered my mind. When you’ve lived your entire life with polio you think everyone knows, you know the saying “can’t see the forest for the trees”. This is the problem with assumption rather than critical thinking.
When I think about it I knew few people of my generation in 1967 who were aware of the devastation caused by Spanish Flu. Fifty years later why should I expect those generations behind me be anymore aware of a disease we basically eradicated in Canada fifty years ago. Some realizations can be painful but needed to avoid future pain. I have now come to grips with the idea that post-polio has played a role in my advancing decrepitude. After over forty years of fighting for inclusion and acceptance the posts have been moved and I have to adjust. Welcome to the my world of accommodation…unfortunately I have watched while the BC Liberals have slowly eroded a good chunk of the advances made. Continue reading “My New Reality…”→
“The life history of the individual is first and foremost an accommodation to the patterns and standards traditionally handed down in his community” – Ruth Benedict
It has been raining off and on for most of the day. I knew it was coming so took advantage of the sun yesterday and went out to restock. Pantry is now ready for at least a four day siege. Glad I did, good exercise and I quite enjoyed the sunshine. Now, gazing out my window, there’s a mist in the air creating a grey tone appearance to my surroundings. It makes me wonder if this is how someone with cataracts views a changing world. At the same time I feel like I’m experiencing a “mental cataract” when it comes to putting thoughts to paper.
As I said it is a dismal day outside so I am trying to avoid thinking dismal things, however that is a blockage for someone who likes to be expressive with words. So I am gazing out the window, partly because of the new two story multi-unit development going on across the street (starting at 7am) and partly to see if I could land on a topic that piqued my creative juices. Sitting here wanting to write but lacking an emotive topic and the phone rings. Now this is cool because I didn’t know it could be done but my computer rings the minute my phone rang with a little phone icon in the upper right hand corner, so I answered with the computer.
It’s a buddy of mine from Alberta (we were neighbours 30 years ago and been tight ever since). He was on his way to Camrose and had been listening to CBC Manitoba in his truck. I know nothing says wake up like listening to CBC talk radio right.
We do share some of the same values and interest so he suggested I check out a CBC Manitoba report on the issues being faced by the polio/post-polio community. I have a history with Manitoba and he is aware of that. The subject is one I am personally very passionate about and have written often about. The story hit very close to home based on current experience with a community health system (all well meaning) that is so out of touch with the reality of what’s happening in the community. BC already has a seniors care crisis lets not complicate things by forgetting our history. There are 15 to 20 thousand polio survivors hitting retirement and entering a system that can hardly manage the current crisis. This should actually be an election issue here in BC!
Boy the rain is coming down but so is my mood. As some of you are aware I am currently “playing the game” so I have a “care worker” come by every morning, usually around 10 to meet the stated needs the current health policy dictates. Usually by the time they get here I’ll be working away on my computer. I always leave a few dishes in the sink so they have something to do but inevitably the conversation comes around to my wheelchair. That way we have both met the needs of community health. Continue reading “Taking Responsibility”→
“As you remove toxic people from your life, you free up space and emotional energy for positive, healthy relationships” – John Mark Green
I thought I was done and was packing up the keyboard. I was just going to shut the site down, rearrange my life and keep my opinions to myself. I was feeling increasingly like “white noise” and I thought it would be easier just to shut down. Two months of biting my tongue has shown me it is to difficult to blindly accept the level of societal negativity going on around me and be quiet about it. It is increasingly difficult to maintain a stiff upper lip while the chasm between right and left ideology continued to deepen. I am not so sure now is the time to shut down.
I have reread my last article a number of times now and have had time to reflect on where that anger was coming from. I don’t like anger if for no other reason than it fucks with my feng shui. During this period of reflection I came to the realization that I owned some of the responsibility for this anger. I had started personalizing issues and that traditionally leads to lost of control.
I usually pride myself on my ability not to personalize issues, comments or give up control of my emotions but I slipped. It wasn’t any one event, it was information overload, too much negative news and complicated by social isolation. And as a political junkie, it’s difficult not to be a little negative these days so it just seemed easier to shut her down. When you don’t golf, hike, cycle or take long walks on the beach you don’t have a lot of venting space so shutting it all down seemed like the path of least resistance.
The last two month has been spend reflecting going through my year end activities. Things like shredding old pay/staff records. Seven years and this is the last year of records I have to shred. Getting my own taxes done, working some policy issues through with the local health authority, trying to stay on top of access problems in my own town and the list goes on. All of this has given me time to reflect on a wide variety of issues and things keep coming back to government policies. It’s not that they are not there, it’s just that they are not policed. We defend rights by speaking up for them, not adjusting them on the fly.
Reflection also gives you time to recharge and I did need that. During this period of reflection I kept receiving my news alerts and they were screaming for a comment. When someone can lecture a young lady who has been on crutches all of her life about the dangers of using stairs people have to speak out. Up until the late 70’s persons with disabilities could be refused rent on anything above the second floor and I do not want to go back to those days. The bigger issue here is why that particular night spot didn’t have an accessible bathroom… Continue reading “I’m Coming Back…”→
It has been such a crazy week I am more inclined to withdraw than report on it. However one does not generate much awareness by sitting in a corner mumbling. In this new time of “post truth” and “alternative facts” (I can’t believe I can even say that) people have to be aware how insidious social media can be and check their facts. People need to exercise their mind just as much as their biceps and fact checking is a good way to do that.
Much of my desire to withdraw is due to the level of fake news and the toxicity it’s having on the people around me. This is why people need to be more responsible and part of being responsible is to verify your knowledge level. A bit of common sense is needed…
Look at it this way, if I were to lend you my car so you could get to Campbell River and back but half way there you ran out of gas because I said I thought it was full when you asked, is it my fault I was wrong. Hopefully one would verify how much gas by maybe topping it up before you took off. Social media is kind of like that. Just because someone says something or posts some “really cool” picture on Facebook does not mean it’s true.
That doesn’t mean anyone with a personal agenda or questionable ideology (that’s what Facebook is for) can’t use social media but social media, like any form of communication, has certain rules. One of the basics I grew up with was an individuals responsibility to verify information. In the days of talking that might have meant something as simple as “what did you mean by that” or “where did you hear that from”. Get into the habit of not just accepting. The second lesson I learned really early was to raise awareness with references and substantive sources. So it is best I write rather than binge on Taboo…so for today I will be somebodies media and to be clear I am NOT a journalist although I have had my own column in the Alderlea Magazine now defunct. So I repeat right now I am playing media…
For those of you that have been following my adventures to access an assisted living apartment well caller 3, and 4 made their presence known. Caller 3 was an in-home assessment done by a nice fellow, an Occupational Therapist who was close to my age. I introduce him to more adaptive aids and techniques I have developed over a life time of trial and error to the point where his visit was more of an in-service than a client assessment. He recognized the foolishness of using criteria to assess an “able-bodied” senior experiencing age related decompensation with someone whose life was build around developing adaptive techniques. How many stairs I can do before I become short of breath or has the weight load of your grocery shopping changed in the last six months? Those are not exactly the criteria someone in a wheelchair worries about. Continue reading “Being Your Own Media”→
I am extremely concerned over the events that lead up to yesterday’s Women’s March and disgusted over the need for it. I thought my days of participating in civil rights marches were over but I was wrong. I can’t quit now and watch all that I fought for disappear. This March is not just about women, it’s about protecting the civil rights of everyone.
America has elected a president, one of the most powerful positions in the world, who will say, do or denigrate whoever he deigns to at that moment to advance his ego. I say his ego because he has been very light on policy except to undo all the “damage” he states the Democrats have wreaked since Obama’s Presidency. America elected a President whose platform is based on how great he believes himself to be. Asked many times on the campaign trail about his platforms the best he seemed to be able to do was reassure everybody they don’t need to worry because he’s so great.
My breaking point, mind you I was stretched pretty taut by that point, was his denigration of a disabled reporter. Yet so many people initially ignored this. I got so pissed off my own family were prepared to disown me for making that big of an issue at the time. It now appears that many more were watching than I realized and yet there are still deniers.
I made a brief mention of the incident on one of the Facebook pages I am connected to only to receive an immediate backlash. I have no idea who this Tom Palmer is however as someone who worked as a therapist for almost fifteen years I recognize the syntax he is creating. When a simple comment regarding a single action can be seen as “you jump on this post sewing your venom like rabid cats. first off with terry and the disabled reporter mocking facts before you come on and look like you’re still stuck in the quagmire of lies surrounding that incident“. I don’t respond to those people because they are like Trump, total denial and blinders to actual facts. I have spend close to fifty years as a disability activist and I’ll be damned if I’m going to sit back at the expense of every rights advancement that has been made in my community, the disabled.
My experience has been comment’s like that are based more on a rigid ideology than fact and anything one says to this type of person is just going to feed the narcissistic nature they share with the new President. When someone can take an innocuous comment and turn it into “sewing your venom like a rabid cat” they are not looking for discussion, they are in search of verbal dominance at any costs. Can’t waste my time on that. Continue reading “Still Marching…”→
“Truth is nothing but a formulated perception of experienced reality” – L. J. Vanier
Something every advocate/activist has to be very aware of is perception. When it comes to disabilities perception is very much attached to the impairment. Access to someone with a visual impairment would be very different to a person in a wheelchair. How society in general “perceives” someone with a psychiatric disability (invisible) may be very different from how they see someone with a mobility aid (visible).
Individual perceptions can differ based on scenario or cause. How you perceive perception will change based on the situation or cause you involve yourself in. If you fail to recognize where the perception is coming from you will lose your flexibility in resolving the issue. If you are relatively new at activism then put a check list together for yourself to provide a template of assessment.
I participated in a conference call this morning with “Dying With Dignity Canada“. Now I am not going to argue the pro’s and con’s of end of life decisions however I will say we need to put as much serious thought into the compassion for end of life care as we show in fighting for the life of a new born.
To me end of life planning is very much a personal decision however since Bill C-14 the process for resolution of end of life planning is a muddled patchwork of systems across Canada. Dying With Dignity Canada approached me to be part of this organization, in part, because of my background as an effective and informed activist. They are working with individuals who have an understanding and appreciation for the complexity of this issue. Since my days of traveling to places like Standing Rock are behind me I now advocate through social media which is how I found myself on the call this morning.
I have knowledge and ability that some like minded individuals are interested in, people I don’t really know but share a common goal. They are spread all over the country so their locus of influence on me is very limited but driven by a cause I can participate in.
I had a discussion last week with someone from Alberta regarding human rights issues. A couple of days before that Barrier Free Manitoba had been in touch with me. These groups sought me out because of a perception. They didn’t look me up in the phonebook. They responded to someone else’s perception of me. Lately I have begun to question that perception. I have doubts… Continue reading “Unto Thyself Be True”→