When Did the Sidewalk Become a Roadway?

A few years ago when my mother was in her late 80s and needing to use her wheelchair more and more, she wondered if she should buy an electric wheelchair. I discouraged her from doing so. My mother had never, ever driven any sort of wheeled vehicle including a bicycle. She had no sense of traffic rules and she would not have taken kindly to any instructions. She had as well occasionally demonstrated a rather callous disregard for cars while crossing the street.  The thought of her being out in public, driving a motorized vehicle was just a bit too frightening to think about.

In the past twenty or so years, on the sidewalks of our towns and cities there has been a remarkable increase in the number of individuals who use wheelchairs. Long gone are the times when city planners said that there was no need to make the downtown accessible as " no one downtown uses a wheelchair" (forgetting of course that people didn't use the downtown because they could not get around). Various pieces of legislation and city by-laws now make it mandatory that all new structure are accessible. It is  the law, it is morally right and it is also good for business.

However in our rush to do the right thing, we have not developed the appropriate social rules as to how and where the plethora of personal motorized mobility devices interact with people who are sharing those sidewalks and roads. With the ever increasing number of seniors, and at least for some of them, their healthy pensions that leave them with some disposal income, there are lots of motorized vehicles on the sidewalks. It is difficult to know whether they use their power devices because the they need to, or because the devices make their lives a little bit easier and they are fun. Either way, it is not my place to question why.

However, when three individuals all of whom are driving abreast on a downtown sidewalk, chatting away to each other and totally ignoring the pedestrians that are having to dance out of their way - it is well with the community's rights to question if they really need to be doing what they are doing. While cities have adapted sidewalks for mobility devices by  getting rid of the curbs at street crossings,  for most cities, increasing the width of the sidewalk is not a realistic option. While we should all respect the rights of individuals who require the use of a wheelchair, those rights do not supersede mine. I should not have to walk on the road to make room for careless drivers on the sidewalk.

 At the market a week or so ago, there was a gentlemen driving an electric trike ( one wheel in front, two in the back). It was a big machine and took up a lot of space. He cruised slowly along the row, frequently stopping to look at someone's product. If he was blocked in front by people stopping to shop at a particular booth, he would turn sharply to go around, making no attempt to see if he was cutting off a child, a parent pushing a carriage or anyone else. We are trained that it would be wrong to yell at a disabled person or for that matter at a senior - but someone should have yelled at this person. Regardless of his age or his disability (or lack thereof) he was being disrespectful of, and dangerous to others.

On the other hand, as someone who drives a car, I get very nervous when I see someone driving their power chair along the road beside SUVs and trucks. Power chairs probably should not be competing for space with vehicles whose drivers cannot even see them. I am not suggesting that motorized wheelchairs be banned from public places but rather that perhaps new drivers should have to participate is some sort of activity that would encourage good driving.  As well I think there needs to be a public conversation as to what is okay and what is not. Which would really just be a conversation about good manners.

As a matter of fact - we need to have the conversation about good manners more often - the world would work better if we did.

Creating a Underclass of Persons who are Disabled

Last week, the Canadian government announced that along with a lump sum payment to thalidomide survivors, most of those individuals will now also be getting, depending upon their needs, an annual pension of $25,000 to $100,000 (CBC). On the assumption that the Canadian government is liable as it did not ban that medication as soon as it was known that it could cause damage to the fetus, it is well past time that they compensate the victims. While I might be inclined to argue that $100,00 a year is a bit high, I am not going to disagree with what the committee determined.

What I find interesting is that someone within the federal government has decided that individuals who have a complex disability require anywhere from $25,000 to $100,000 a year to live. A new standard has been set as to what is a reasonable income for individuals who have a disability. This new standard is in stark contrast to what other individuals with disabilities get in Ontario. At present the maximum amount a single person receives from the provincial government is $13,176 (ODSP). To be clear - a thalidomide survivor with low needs will get $25,000 annually which is almost twice as much per year as an individual receiving disability benefits for the government of Ontario.  

I m not suggesting that that thalidomide survivors are getting too much, but rather that perhaps it is time that we recognize that what various ministries of social services give out across the country is far too little. The present rates of ODSP (and the attitude that shapes its policies and implementation) condemn individuals with a disability to live in poverty all of their adult lives. Perhaps it is time that the various governments that are responsible for providing financial assistance to individuals in the community look at the federal calculations and adjust their rates upwards.

If they don't, then we will have created a two tiered systems where some individuals with a disability have the potential for a government funded, significantly better quality of life than others.

The federal government's decision also raises another issue. When can governments be held accountable for their decisions? How do they "pick" which groups they will be fair to? Other possible lawsuits include the Aamjiwnaang First Nation who live near Sarnia, Ontario. They have for years been experiencing a range of health problems that are, in all likelihood  related to the fact that numerous chemical plants have been allowed to be built near their community(The Star). In Sidney, Nova Scotia, before the Tar Ponds were cleaned up - the area had the reputation of having more cancer per capita than anywhere else in Canada (CTV). Is a government responsible for allowing companies to dump 700,000 tonnes of toxic chemicals?

There are hundreds of other examples (Grassy Narrows is perhaps the worst of them) of where people have become ill, have become disabled because of government inaction. We as a society and as a community need to start talking about not only how to ensure that corporations are prevented creating these disaster areas, but as well how we can assist those who have been affected by them.

How Long are Parents Expected to be Parents?

Yesterday morning, CBC ran a piece about the frustration of a mother whose 21 year old daughter has autism. The story states that the young lady's disability is significant and that she will need a high level of support for all of her life. The mother, in spite of trying to find some sort of ongoing support system for the past three years, is painfully aware that once her daughter finishes high school this June - there will be nothing for her. It is unlikely that any services will be available anytime in the foreseeable future (CBC). This of course may change because the mother has gone public with her situation. However if all of the 21,000 people who are waiting for supports in Ontario went public tomorrow nothing would be solved. We would, in all likelihood, just become even more blasé about this issue than we are now. The sad fact is that this is not the first time such a story has reached the press and it will not be the last. Every intake worker in Ontario who works for an agency that provides supports to individuals who have a disability could provide a list of families who either are in or are about to be in crisis because of the lack of support.

I, and other people like me need to shoulder some of the blame for this situation. I don't know what we should have done differently, but we clearly lacked the ability to foresee the future.

In the early 1970s throughout much of the western world, there was a movement to close the large government institutions that housed people who had been labelled as being disabled. In Ontario these institutions had their roots in the Asylum Act of Upper Canada from the 1840s (For a detailed history of Ontario and the treatment of individuals who have a disability see Harvey Simons).  While such institutions might have been designed and run by people who thought they knew what was best, they were horrible places. I went for a tour of Huronia Regional Center as part of my training at George Brown College in 1970. We saw young people in metal cages constructed of two cribs - one place upside down on top of the bottom one and wired together. It was clear to all of the students on that tour that there had to be a better way. As I read more, it became clear to me and to many others that people who had the capacity to live in their home communities, spent their entire lives in these large institutions (see short videos MCSS). Life in those institutions was abusive, cruel and profoundly unfair.

By 1975, through a rather remarkable series of events a movement, comprised of young professionals in the community, parents (who had been the driving force of all of the early programs in the community) of young people who had been labelled, academics and civil servants within the Ministry of Community and Social Services, was created. Its goal was to close down the large institutions.  Everyone said that it would be cheaper, more effective and far more beneficial to the individuals to provide community based supports. Over the next 30 or so years, people in the community developed a rather extraordinary range of supports and services. There is no doubt that for the overwhelming majority of people who had been incarcerated in one of the government's facilities, living in the community was , by far, the better option. A year or so ago  the last institution for individuals with a developmental disability was closed. There were, in many parts of the province, loud cheers.

We were wrong about the costs. By the late 1990s, developmental service agencies were getting, on a per capita basis, more money than any other special interest group in Ontario. Developing appropriate levels of support to live and to blossom in the community requires an expensive and ongoing investment in that community. The ideology that every individual had the right to live in the community was so powerful (and so right) that we lost sight of the practical and fiscal limitations within those communities.




 We were also wrong when we assumed that the community had an infinite capacity to support individuals. Or rather we did not think about the emotional strain and financial costs we would be placing upon the parents of those special needs children.  Families, some of who are supporting children who are profoundly disabled, now have no choice but to bear the total responsibility for raising their child. To maintain the child and their parents in the community, complex support systems have been cobbled on a case by case basis. Part of that support system includes the Ministry of Education providing day programming until age 21. Somehow the professionals, the academics and the civil servants have not yet figured how to support many of those young people once they graduate from school.

We the public, on a regular basis, will continue to have access to media accounts of young people and their parents being stuck between a rock and a hard place. We will hear of families using their life savings or their retirement funds to build supports for their adult son or daughter. Parents will share their frustration over the decisions that they are forced to make including perhaps giving up their careers to look after the individual. There will be a flurry of activity, angry letters to the editor (or the modern equivalent thereof) and strong questioning in the Legislature. And this cycle will happen year after year after year. Such a cycle is unhealthy and unhelpful for the young person, their families and the community. Solutions need to be found.

I am proud of my career in the community. I am thankful that I got to participate in a movement that corrected a great injustice. It ennobles us all when our society says that those who are vulnerable and who need our support should not be warehoused in large institutions. But until we figure out collectively how we will support people without putting the primary burden of support on the parents for 30 or 40 years - the job is not finished.

We really should have thought about that 30 years ago.

On the road Again 2015 - Prologue #2

Four weeks from today I will be on the train somewhere just east of Hornpayne, Ontario (on the assumption that VIA is on time - which at best is a bit optimistic). This time in four weeks plus one day I will be somewhere west of Winnipeg hopefully ensconced in a nice vehicle heading to somewhere near or even past Calgary. As I look out the window at the dark, grey and cold sky, I can only hope that if I am standing on the road - the weather regardless of where I am, is nice. I really thought this year that I would be leaving earlier but my granddaughter is graduating from grade eight this year. I would not miss that event for anything.  

I have already spent a fair amount of time thinking about what I need to do get ready for my trip.  I have planned this trip so often in the past ten - fifteen years that I really don't need to spend a lot of time thinking about what I need to do. Everything is almost ready. I don't even need to make any new signs. None-the-less yesterday I dug out my pack from the closet where it is stored in all winter. I have checked my basic equipment and determined that except for a pair of smell-proof socks, a green tee- shirt, sun tan lotion and perhaps some new batteries for my bluetooth key board - I am good to go. In fact I was tempted to pack yesterday but it is too soon even for me. Perhaps next week I will take a trial run at seeing what I can squeeze in and what I really don't need. As usual - this process of packing and re-packing is one that I take great delight in. I will spend hours deciding what to take and what to mail. If I can't leave tomorrow - at least I can practice getting ready.

I find it rather interesting that almost everyone that I know and meet on the streets of Peterborough or at the market - the first thing they ask of me is "when are you heading west?". Even my dental surgeon who, now that he has pulled out the broken tooth, needs to implant some sort of post into my jaw to hold the implant, asked me when I was leaving. The staff at my regular dentist had asked me the same question just two days earlier.  I think that some of them would be as disappointed as I if I ever said that I was not going. I am not too sure what I would want put on my tombstone (if I was going to be buried) but I suppose being labelled as someone who travelled west most summers would be just fine.

So the official countdown has started. I am getting excited. I am more and more curious as to where the big trucks that I see on the streets of Peterborough are heading next (and wondering if they would pick me up), vibrant images of spots along the highway that I have stopped at before, pop into my consciousness at unasked-for moments and the semi-awake dreams (fantasies) of rides that I may get are consuming larger and larger chunks of my just-as-I fall asleep and as I wake moments.

A month from now I will be on the road and I can't wait!