I am ending this year's series of blogs on a regrettable note. On a personal level, my mother in law, Anne Gretzinger, died on or about May 27, 2012, in hospital. At the same time, I met no less than two others in my region suffering from the same kind of supposedly rare cancer that overtook her. Others are dying in other ways, many before loved ones and many without a soul in the world. Each one of us wants to make our mark in the world, and in many ways, I try to do that for those that were unable to speak for themselves. I am afraid of our world moving to a slippery slope.
Prior to shutting down my practice for the holidays, however brief this idea turned out to be, an old friend phoned me to tell me that another had given her the power of attorney over his health and financial affairs. This is the gentleman I once wrote about that, for the lack of political will, to finance an insulin pump, he is now in hospital dying. Both of his legs have been surgically removed above the knee and he has been moved to Welland, where access to dialysis is readily available. They now consider him what many in some quarters refer to as being a "bed blocker" or in more polite terms, a patient requiring "alternate level of care". Every day in hospital is costing him and his family $53.00 and change, as they await a spot in cheapest form of long term care. This is where my cynicism sets in big time. When I met him, he was a strapping man of 5 feet, 9 inches, and walking most places. He still had his kidneys, his feet, his eyesight and most of his health, although he did require some foot care. He was a late diagnosed Type 1 diabetic, and like many in his family, this turned out badly. At the same time, a close colleague of mine, also Type 1 diabetic, has access to an insulin pump and he gets along fine, complaining only once in awhile of numbness in his feet.
There is a movement on paper at least about treating people in their own homes, allowing people to live in the least restrictive setting. People do not want to die in institutional settings. Most tell me that they want to die in their own homes, surrounded by family and friends, both two legged and of the four legged, furry variety. People also tell me they want to live out their old age in their own homes that they bought and paid for, perhaps, passing down the title to this same property to their kin. Our government is encouraging that, at least for those people with money. The Healthy Home Renovations Tax Credit is one example that I played upon when I compared the math between what healthy seniors with money would be getting after the recent and well publicized cuts to OW and ODSP Community Start Up and Maintenance Benefits and Home Repairs. It was cut in half and yes, the other "half" of this budget went to this new Tax Credit.
There is no way my friend could have stayed in his own home. He would have had to hire a private nurse and have a live in caregiver to keep an eye on him during the day, as well as somebody to cart him around to his medical appointments. Wealthy seniors rarely get to the point where they become this ill, but if they do, they have the resources to hide it and to live as close to a "normal" life as possible. However, in recent weeks, my friend has passed out a couple of times. I noted that he would not call me back when I notified him of an engagement that he was made aware of several weeks before. When I finally found him, he had just exited the ICU unit of the hospital. A few days later, I saw him strolling on his electric wheelchair telling me "they" were going to cut off his legs. I saw them. They needed to go, yesterday. He was also full of bumps and red sores, likely from his ongoing kidney failure. If he had money, he would not have gone as far.
Then as I prepare to pack my bags to go home and rest some during the holiday, my old friend called me in tears telling me that "they" wanted her to eventually consider pulling the plug on his dialysis. She and I know that if this were done, within seventy two (72) hours, he will die. She did not want to take responsibility for making a decision that would ultimately end his life. I couldn't blame her. Not that his quality of life is exceedingly great ... BUT I know if he had some money, my old friend would not be having that conversation with his doctors. They would be referring him to one of the better retirement homes in the region, a private nursing service, as well as regular transport to the golf course and perhaps, a brief vacation. There is a lot to be said for the movement for the "good death" or euthanasia for the critically and terminally ill, but there is also a lot to be said when we even measure how social inequality even in its crudest terms is now dictating to us who lives and who dies.
This is certainly not the only story like this that I heard this month, although this one is going to involve some legal work for me and a close associate, as well as paperwork at the end of the day. There were a few others as well, such as a woman who is in her mid-fifties who suffered from three subsequent heart attacks who had to quit her job and is now relying on social services, as the system wrangles its way to getting her onto CPP Disability and ODSP benefits. In the meantime, her mortgage has gone begging, and she is likely to lose her only asset she owns: her home. On the contrary, I also happen to know an old curmudgeon who has been fortunate in his working days and is currently living at one of the most expensive retirement homes in the city. He gets computer training and communications support through another friend of mine who is also a client. He is approaching his nineties and there is nothing about this city, its community and its politics that he does not have an opinion about, no matter how crazy. But at close to $5,000 a month, plus some handy extras and a supportive family, he is going to live well past 110. His secret, he says, is a glass of red wine a day and a fighting attitude. Never give up, he says. Never give up.
There is quite a difference between my other friend who is dying and this old curmudgeon that might well wander the earth past the time of all of us. He has money, but my dying friend does not. There is very little that medical science will not do for somebody that has the money to pay for it. There is very little that medical science will do for somebody that most desperately needs care and recovery, but has no money to his name. My old curmudgeon friend includes among his friends a couple of former mayors, a former and a current MP, and several lawyers. In his day too, he was involved in such causes as Rotary, Lion's Club and such. He did a lot of good things in his time and knew a lot of good people, many that my readers likely heard of (but will not be named here). My dying friend includes people like myself, but also others who nobody has ever heard of, or has reason to get to know, although they too are precious human beings. Most of his friends apart from myself are also in the disability community, working minimum wage, or on the vulnerable border between life and health failures. His very best friend is a four legged golden retriever, which he calls Ralph.
These issues and ideas around life and death not only revolve around us homo sapiens, but also around our beloved four legged creatures. Nobody knows what will become of his four legged friend should the very worst outcome take place against him. I am not sure if my old friend Renee, his attorney, has the energy and wherewithal to re-adopt this adorable pooch. My friend adopted Ralph when he was well enough to care, well enough to love another living being with all of his heart. Ralph came from an abusive home and came to him from a shelter, where thereafter he fed and cared for him like a grease monkey and a brand new car. I can only imagine how when my friend first went to the hospital, Ralph wandered around the house waiting for him to come home. This image in my mind reminded me poignantly of Angel, my in laws' dog, and how it likely reacted when she first learned that Anne Gretzinger was never coming home again.
I leave this year with this kind of sadness. Today, my father in law still comes over with Angel, who becomes so excited and whines hysterically as she sees us approach. I am sure my friend's sister is at a loss as to how to get Ralph used to the idea that my friend is never coming home again. This is an issue I am going to have to deal with as soon as I get back to work, and part of why I have to cut my holiday short. I have received plenty of hate letters and e-mail messages over the years over the strong political opinions I express, as well as "cautions" from even my friends who think that anything but positive messages is going to throw the world sideways. I come from a place and time where we called a spade a spade and did not put lipstick on a pig and call it something other than a pig. I always loathed the inventor of Pollyanna, as much as I loathe the inventor of social inequality and damnation.
If we do not talk about the trends that are occurring, the societal values that we have will be displaced by these seemingly medical directives, the increased scapegoating across the globe against the most vulnerable, we are giving "them" (whoever "they" might be) a license to continue. My friends who I still love regardless but still err on the side of Pollyanna, may want to ask me what do we do. The important thing is to allow this conversation to take place. During the times of Nazi Germany, "everybody" knew what was going on with people with disabilities that were living in any of six designated killing centres under what then was referred to the Action T4, or Aktion T4. In fact, people used to tease one another that if they continued to act as "crazy" as they were, they would be shipped to Hadamar, one of those notorious institutions. Kathryn Quarmby is doing the right thing in her expose in her latest book, Scapegoat: Why We are Failing Disabled People. This book and the issues it raises were becoming more eminent in the rise of the UK governing Coalition's welfare reforms that in effect merges persons with disabilities with all others who claim assistance from the state, such as Job Seeker's Allowance and other forms of social assistance available to the able-bodied. People with disabilities now enjoy equal status to that of the alleged blood sucking welfare cheating scroungers of the UK (see this website and the many valuable links to it).
It is not that it "can't happen again" or it "won't happen in Canada", the fact is it is already happening. It is happening with my friend with the amputated legs and dialysis, my friend with the three heart attacks, and many others I know about as I write, despite the tingling effect of Bailey's Irish Cream. I know about people who have been pushed off wheelchairs and told they can walk, that they have somehow scammed the government into getting them a "free" wheelchair. Another friend tells me that ODSP will not repair her wheelchair because her wheelchair is "somewhat akin to a car" and nobody pays her (her ODSP worker) when her car breaks down. Well, let's see you take that car from your bedroom to your bathroom and see how well that works. This kind of thinking has been going on for a long time, not just around the water cooler but in real policy terms as well. I remember that portion of the course I taught to many students in the early 1990s, asking them to write an essay to argue whether or not something like the Aktion T4 can happen again and happen here in Canada. It was and still remains to be an amazing thing that people tell me what a horrible time folks with disabilities had during the Third Reich, until I remind them that the World War II had not even begun before the war on people with disabilities began.
People are also disbelieving that even modern day social assistance laws are based on eugenics based thinking. The whole concept of "man in the house" and "birth out of wedlock" was treated as something to be ashamed of, hidden and penalized by social program analysts. Many readers will recall how early welfare workers would search the homes of single parents or deserted/widowed women to search for "signs" of a man being in the house. These days, they may not be so oblique with their intentions, but financial penalties always ensure when people behave in ways that others that are not on social assistance behave; that is, they are penalized when they are married or living common law, have a child remain with them in the home after they pass the magic age of eighteen years, or require a child to pay room and board from their part time employment. The "incentive" under social assistance is to remain vulnerable to poverty, whereas, any attempt to leave poverty is penalized severely.
Poverty rates for married people are much, much lower than people living alone, but if a person receiving disability/ODSP tries to engage in a relationship to improve their financial circumstances, the law now requires the working spouse to instantly support them, warts and all. It is designed to repel even the most tolerant and loving persons from engaging in relationships with persons with disabilities. This, coupled with the fact the eugenics board in Alberta continued to exist and act against certain persons with disabilities well into the 1970's is proof of this. When this was successfully challenged under the Charter and damages were awarded to persons so affected and forcibly sterilized against their will under Canadian law, the Alberta government had the nerve to attempt to pass the notwithstanding clause of the Charter of Rights to severely limit the damages and parties able to claim damages. It was only after serious backlash from the disability and human rights community, that this pathetic attempt at upholding paternalistic and abusive values was eventually discarded. I remember editing a national newsletter at the time. One of the activists that fought this attempt to discard these rights under the Charter was an ex-Torontonian conservative that shared with me many of his insights over the years, leading me to believe that governments do not always govern with the best intentions. In many ways, they have historically governed with the worse intentions, especially but not expanding this discussion to the fate of our aboriginals and our so called residential schools. We are not innocent bystanders when we allow our governments to do this. We are active participants.
We have to acknowledge what is happening, understand the roots of how these things begin, and to discuss it and then take collective action. Many communities have rightfully taken collective action against the cuts to the Community Start Up and Maintenance Allowance and Home Repairs Benefit for people receiving OW and ODSP benefits, shortly after it was announced in the 2012 Budget. This was a very large collective effort across Ontario. A group of fourteen communities met on December 14, 2012, and delivered a common statement to the Premier afterwards. Some are saying the government response is positive, in that they have injected $42 million of "transitional funding" to the municipalities to get them used to the fact they have to do more with less and less money. This is a band aid and at best, a temporary reprieve. The municipalities will still be in charge of the money, have little to zero accountability for how it is spent and no appeal rights for individuals turned down from assistance from this new program, and apparently $42 million isn't even close to what they cut from the original programs and it is only good for 2013. Many advocates asked about what happens afterwards, but were cut short by the mainstream media. Many referred to this as a drop in the bucket, and others like myself state this does not change the fundamental shift from entitlement rights to "discretionary" and "charitable" rights, which really are not rights but are decisions made by others based on their perceived value of you as a person, not your right as a citizen.
Like the doctors in my friend on dialysis' case, once again judgment calls will be made on the value of people's lives. My friend dies. My friend, the curmudgeon with money, lives forever. Some people's lives will inevitably be deemed to be more valued than others, and of course, regardless of individual value, at some point in the fiscal year such as May or June of each year, the money will run out and people will be told they have to wait until April the following year for their next installment. Municipalities don't have to cough up after that. These benefits are no longer mandatory. There are no appeal rights. Your case can be brought to a worker who is having a PMS day, or somebody that believes that people on ODSP are "better off" than people on OW and they will be allowed to make a FINAL decision on your case to deny you. Or you can wait until next year to take care of the bedbugs, or leave your violent partner who is beating the living daylights out of you. Sleep on the floor in the meantime. Our wonderful Ombudsman Andre Marin does not even have the jurisdiction to review these ridiculous decisions. A private members' bill to include the so called MUSH sector which includes municipalities died on the order paper when McGuinty rabbited from the Legislature this past October.
Rights are being eroded for the poor, as the charitable sector has no legal consequences for privacy breaches it may happen upon in the course of its work with vulnerable persons outside of health care. With health care, Personal Health Information Protection Act, privacy must be safeguarded but not if you are a client of a food bank, a homeless charity or a drop in centre of ambient sorts. Meanwhile, wealthy people are allowed to live in gated communities, have their personal privacy of all respects protected in all areas, as well they worked to decimate the long form census because they did not want people to know how well off they really were -- while the rights of the poor get further decimated as we speak. In addition, has anybody tried to sue a food bank or soup kitchen for serving spoiled food that resulted in some form of illness or disability, in the extreme event? Better bet that if a wealthy person got sick after eating sushi at a sushi bar, they'd be able to sue and more! My discussions in these blogs are about accountability. They are about equality. They are about having equal rights in the pure and crudest sense.
I want poor people to have the same rights as millionaires when millionaires do not lose more than a small fraction of their income to taxes and clawbacks to government. Why do the poor often lose more than one hundred percent of their income this way? Why aren't we asking our leaders the right questions? We need to stop glossing over these questions and start putting them to our leaders and refusing to give up or let up our protest until they agree to make it right and follow it through. I don't believe they reversed the CSUMB cuts one bit. We need to call a spade a spade and put it forward now and educate one another how to get involved, write letters, get involved in collective action, teach others the facts the media will deny and to partake in movements like Idolnomore and push and push and only until we have full rights of citizenship, and stop admitting or believing that our government have our best interests at heart, because they don't. All one has to do is find out what corporate board or corporate job they get as soon as they leave politics, or what lobbying organization they join ... because that is what the truth is my friends. That is the truth.