Disability and the two wise men

“Those we most often exclude from the normal life of society, people with disabilities, have profound lessons to teach us.”  Jean Vanier, Becoming Human

There can be an overlap between disability and mental health when the years of dealing with mental, physical or learning challenges take a toll on a child. Nothing prepares you for your child's first crisis. Like glass shattering around you, you find out everything you've taken for granted is as fragile as fine crystal. 

Your daughter somehow finds a bottle of sleeping pills and is now unresponsive. You find the strength to drive her to the hospital where she regains consciousness but you are told that she won't be assessed.  After a number of attempts with similar hospital outcomes, you finally realize that for your child's safety, you will have to call the police. And you think there can be nothing so heart-breaking as watching the police take away your child.

Nothing, that is, until you talk to Amanda Telford.  Some of you may remember Amanda from the headlines last spring when for her son's safety, she left 20-year-old Philippe in the care of a social service agency. Philippe has developmental delays and autism.  He has Tourette syndrome and because of this, he flicks his wrists in a manner that others find off-putting.  He is a runner and has run into traffic.  Philippe also has adult-onset diabetes that require daily insulin injections and because of his complex needs, the Telfords had trouble finding respite care for Philippe.  For years, they took turns sleeping and working in shifts, never leaving Philippe unattended.

The Telfords played the game by all the rules to find care for Philippe.  They contacted appropriate social service agencies to simply request a little respite care.  They were then promised meetings with agencies that didn't materialize.  They contacted their provincial and federal representatives and were told to wait their turn ... on a waiting list with 568 other families at that time.  A few years ago, there were two hundred adults waiting for residential services in Eastern Ontario.  Now there are now 931. Two years ago, 13 adults were placed in residential care.  Last year, there were 3 placements!  When Amanda's health started to fail, she couldn't wait any longer.

We are often told the aging population will create a crisis for medical and social service agencies and a financial crisis for the next generation.  But there is some truth to an editorial in the December 2012 edition of Zoomer Canada where Moses Znaimer says that the Boomer generation is the one holding it together financially for the Millennials both in terms of continuing to house them well into their twenties while holding vast amounts of equity in their homes that many Millennials will eventually inherit.  Many Boomers who do survive to be 90 or 100 will have that home equity to see them through and even if junior doesn't inherit the house, mom or dad Boomer are less likely to be a drain on the public purse than prognosticators of the "grey tsunami" would have us believe.

On the other hand, there are great numbers of children with autism and other special needs who are coming of age.  What will become of this tidal wave of children with exceptional needs as they mature?  To my mind, this is the real crisis.

As parents of exceptional children age, we worry about who will be there to care and support our children when we no longer can.  We go to great lengths to set up wills with Henson Trusts, the only vehicle available to ensure that our children's needs will be met. We scrape together whatever we can deposit in Registered Disability Savings Plans, the RRSP equivalent for people with special needs.  And these will just provide basics for our children.

Governments closed institutions in Canada for humane reasons or so we were told.  But it is definitely not humane if the only alternative to institutional care is to live in an elderly parent's home or on the street. Canadian governments haven't funded nearly enough group home spaces to begin to meet the growing need. And as thousands wait in line for a residential space, Amanda is asked the heart-wrenching question once again, "Will you take your son home now?"  And somehow every month or so, she has to find the strength to advocate for her son while continuing to say no.  What will happen to Philippe when Amanda is no longer there to watch out for him?  What will happen to the thousands of Philippes?

It's interesting to note how different religious leaders often reach similar conclusions. Jean Vanier is a deeply religious Catholic and Mahatma Ghandi was a devout Hindu.  I'll finish with a last quote from Ghandi:

"A nation's greatness is measured by how it treats its weakest members."

Don't look at the elderly as the threat to civil society when the real danger comes from shards of glass beneath our feet.


The views expressed in this post are personal opinions only.

The making of a politician

Running for public office can be daunting.  Putting yourself and your views out for public scrutiny is scary.  I suppose this has always been the case but it is particularly so since the advent of the internet.  Good people who run in an election need a thick skin and your encouragement.  As I wrote in an earlier post, most people should be encouraged.   They run for office for good and caring reasons.  But what happens to these good people after they become politicians?

About 8 years ago before I became a school trustee, I attended an education conference in Toronto.  It might have been the annual People for Education conference, which I highly recommend, or an event sponsored by The Learning Partnership.   The important feature was that it brought together different people interested in education under one roof.

I remember two moments from that conference.  The first was that a trustee from another school board encouraged me to run for office.  Her gesture was very kind and meant a lot to me, although there have been a few days since when I was more likely to curse than thank her.  This trustee and I became good friends and although politics can be hard, I have no regrets about running.

The other part I remember is hearing an older trustee speak on a panel.  This gentleman was well on in age and he said something that I found rather peculiar.  He said that in his school board, the board meetings are scheduled on the same evenings as the school council meetings.  Why?  Because school trustees didn't want to hear or didn't want to know parents' complaints.  He felt that if he heard some parents first-hand, it would influence his decision-making ability in the boardroom.

At the time, this struck me as rather strange.  Why wouldn't a politician want to keep in touch with his constituents?  Why wouldn't a person responsible for governing an institution want to hear complaints?  Why would a thoughtful man want to keep himself ignorant?  Now I understand a little better.

The use of various mechanisms within political practice, such as plausible deniability, creates a win-win situation for politicians and bureaucrats.  It's not just staff in a school board, city hall or legislature who want to keep politicians in the dark; many politicians want this too.  It works for both sides and the "good politician" who is willing to play the game, soon learns not to make waves and not to ask certain questions.

I was given advice by a veteran politician shortly after I became a trustee.  It was, "Play ball with staff.  Defer to staff."  Sadly for me, I suppose, I never got the hang of this and I continue to ask questions.  Perhaps it's arrogance and I delude myself to think that I am a better politician in trying to understand a very complex system.

Even though I'm not one, I have a lot of sympathy for the "good politician."  The system really is so incredibly complicated with a great many traps.  I think most new politicians must feel overwhelmed and many strike an informal deal with their staff - I will not make waves and will support staff initiatives if you support and protect me.  Of course none of this is actually said.  It simply becomes the dynamics of the interaction between the two groups -- an understanding.

At some point, the politician makes a choice.  Although the bureaucracy works to keep politicians in the dark, it's the politician him or herself who makes the decision to stay in the dark.  Through this arrangement, staff  maintains control by limiting contact to the politician.  In return, the politician may get some protection with a bail-out in a difficult situation or perhaps staff assistance with a project that works to the politician's benefit.

Of course all this is used to comedic effect in older TV shows like Yes Minister and we even saw it illustrated on the show the West Wing, where the politician in question was a principled and brilliant president.  The point is that most politicians either learn to play the game or their political party and staff will find ways to ensure they do.

I now have free rein to speak and as a school trustee, I don't need to worry about the influence of a political party.  Still I can assure you that even without the influence of a party, there are mechanisms used to try and silence outspoken politicians though we are learning just this week that they don't always work.

It is an extraordinary politician who can pick his way through this ethical mine field unscathed and we honour those rare politicians, such as Nelson Mandela or Mahatma Gandhi, who do survive.  The winners in this game are not simply those who cling to office. That's easy enough to do.  The real winners are the leaders who inspire us and leave public office with their integrity largely intact.


The views expressed in this post are personal opinions only.

Rob Ford and the unexamined life

I love conversations with my son.  It's a routine we fell into many years ago as we watched tree bats at sunset swoop overhead or walked in an early morning rain.  Over time, it became outings to Chapters with conversations over coffee.  Now we just seem to fall into the routine anytime we can.  It's a great gift!

My fondest memories of my late father involve walking and talking too -- over a long bridge in the winter cold for the joy of a hot chocolate on the other side or on a beach at dawn in search of sand dollars. Those were the times my father would impart parental pearls of wisdom or ask, "If all your friends jumped off a bridge, would you jump too?". But what I remember most are the stories my father told me about his life.

My dad saw the world as larger than himself.  Orphaned as a child, he cherished the notion of family as part of that bigger, more important world he believed in.  Through his beliefs and principles, my father knew who he was.  He had integrity and he wanted his children to grow into principled adults too.

What is a good parent?  Although putting a roof over children's heads is important, being a good parent is not about buying things. Nor is it about living in the best neighbourhoods or enrolling children in the best schools.  And it's not just about throwing a football around, though that's good to do too.  It's about spending real time rather than simply quality time with your child.  It's about talking with your child.  And about something we can all do -- listening to our children.

The funny thing is that the listening part is probably the most important aspect.  By listening to your child, you validate her as human being.  You communicate that he has something worthwhile to say.  And if you have the patience to listen, really listen, you may find that your child does indeed have something valuable to say, occasionally something even brilliant.  Out of the mouths of babes come honest observations unfettered by convention.

Well, I promised a tie-in with our cause célèbre of the week, Rob Ford.  What I see in Rob Ford is a man sadly without integrity, someone without a larger world of principles or beliefs. As is revealed in the latest video, a man who lives in the very small lonely world for himself and himself alone, without larger purpose. Little wonder he turns to alcohol and crack in his loneliness.

Though an extreme example, Rob Ford is a product of our time.  When few people have time to make sense of the world or even have time for a conversation, when people are inundated with senseless information devoid of meaning, when they are alienated and feel powerless to control their destinies, and when change is happening at an increasingly faster rate, almost everyone is left floundering.  'Whatever', the universal cry of youth, then becomes the norm.

If I were to have had this conversation 2,400 years ago with the philosopher Socrates, he might have responded, "The unexamined life is not worth living." Slow down and find out who you are. Take time to know yourself.

This seems an especially good maxim for politicians to follow. As Andrew Coyne said on The National, "There's been longstanding problems of a lack of an accountability mechanism. We've relied a lot on decent chaps running things. And when decent chaps aren't decent chaps or aren't running things, we've run into difficulties."  To which I might respond, well south-of-the-border, they've seen the result of the other extreme with too many checks and balances. They now have a political system that is shut down with gridlock.  Right now, neither the Canadian nor the American system seems to be working very well.

All I can do in life, all anyone can do, is moderate my own behaviour.  To do this well, I have to be introspective and act with integrity, accepting my mistakes and learning from them.  Reflection takes time though but with it, the old-fashioned words of principle and integrity can take on new meaning.  All we really need to do is slow down and listen to that inner voice; just slow down.  It doesn't really matter where you begin but a walk with your child this weekend would be a good place to start.


P.S.  Last weekend, I had the pleasure of meeting a regular reader of this blog who was kind enough to come over and introduce himself.  Thank you.  If you ever find yourself in the same room with me, please don't be shy. Come over and say hello.


The views expressed in this post are personal opinions only.