The Poster Child Philosophy

“A commitment made to a child should be a commitment for life” – Terry Wiens (on the subject of Poster Children)

How many times does a picture of some cute animal or cute child show up on your Facebook wall?  That’s because cuteness sells.  This is also a well established premise in marketing and nothing is cuter than a child.  Non-profits, foundations and professional fund raisers understand this which is why we see a plethora of “cute kids” for any major fund raisers.

You can’t get through an hour of TV these days without seeing some cute kid in some ad for Variety Village, Ronald MacDonald’s House, St. Judes Hospitals, the BC Children’s Hospital or some other equally worth whiled cause.  Professional fund raising has become the norm while governments erode the advances that had been made 30 years ago.  This is the reality of how we have become a “user pay” system.

It has become the responsibility of the community to raise funds for a wide variety of equipment and services that the government use to provide.  It is now telethon’s hiding behind cute kids to fund what use to be community services.  Meanwhile foundations and professional fund raisers use the cute poster child concept to purchase “specialized equipment” that many institutions no longer have an operational budget to effectively use.  At the same time parents are left having to use their child to advocate for services they didn’t realize were not as available as they had been lead to believe.

1955 March of Dimes Timmy Winnipeg
Winnipeg 1955 March of Dimes Timmy

I was one of the first generation of poster children.  This was a time when we didn’t have the level of regulations and by-laws that exist today.  The bulk of us were institutionalized in hospitals dedicated to the well being of polio kids.  The truth was it was easier to warehouse us in a centralized facility then create an inclusive community.  This was pre-socialized healthcare days when there were no policies or regulations governing how the disabled lived or attended school.  However we were kept pretty busy while providing great photo ops for dignitaries and causes of the day.

By the time I was 16 I had met the Queen, Roy Rogers and Dale Evans, Cisco Kid, Gene Audrey and the list goes on.  Every headliner at the Calgary Stampede made a visit to the Children’s Hospital.  Nothing said cute like a photo op with the kids at the Children’s Hospital.

The optics of that “cute child” pulls at the heart enough to get people to loosen their purse strings and donate to a good cause.  The optics of a cute child go a long way in fund raising.  I know, as Winnipeg’s 1955 March of Dimes Timmy my picture helped raised a whopping $9000 which was a considerable amount of money in those days.  However that cuteness wanes when you become an adult and move into the real world.  When that happens you either become an advocate or a resident in a long-term care facility.  At 18 I was definitely not going into a long-term care facility so I became an activist for disability rights and community inclusion.

I have spend my life as activist for one cause or another.  I have raised a family, had numerous careers and had to fight every step of the way.  Today I am reminded almost daily as I watch gains I had fought for being eroded.  In todays society it has become the parent who must advocate for many of their child’s needs.

Picture of young NickIt takes a very dedicated and determined parent to stand up for their child and raise awareness.  Parents like David Willows who capitalized on the cuteness of his little fellow, Nick Willows.  He is tackling an issue that should have been resolved years ago but continues to be a hidden embarrassment while also being a major barrier to independence.

It is difficult to involve your child in their community if the proper supports are not there.  Something as basic as proper “designated wheelchair parking” shouldn’t be a battle we are still fighting but we are.  David has tapped into the cuteness of his son to get this message across to the powers that be.  Being a parent to a child with special needs can be challenging enough without having to refight battles many thought had already been dealt with.

Photo of a disabled parking spots being used as construction site
There were 27 other spots but they used this one for tools

What astounds me is how 7 of 9 (not a Star Trek reference) municipalities can see 3.9 meters so differently.  The City of Nanaimo tells me the dimensions are actually 3.7 meters but I’m not going to quibble over .2 of a metre.

What I do quibble about is when public designated disabled parking are used as a work space for contractors or the place where the snowplow can stack up the snow from the mall parking lot.  That’s not cute…

Unfortunately we all grow out of that “cute” phase and become adults with extradorinaiy living costs.  Paying 60% of your retirement income into rent because basement suites don’t work doesn’t make you cute.  Having the designated disabled parking stall for the apartment building as the one not under cover (like the other 25) is also not cute.  No such thing as getting into your vehicle quickly during a rainstorm…

I hope by the time Nick gets to an age where he realizes how hard his parents had to fight for him these issues are far behind us.  The joke about “getting the best parking spots” was never really a joke…

 

Polio Diaries – Episode 5

And so it was that on Monday December 28, 1953 my parents returned me to hospital.  Christmas was over and I don’t remember any more of it than my dad throwing up.  Friday January 1, 1954 I entered what was to be my first complete year as a rediscovered individual and that year would include a revolutionary new treatment regime.  The Sister Kenny polio treatment process was just beginning to take off in North America but that is a whole other story.  I will save it for a separate episode.  Needless to say there was serious resistant to this treatment initially due to professional protectionism rather than the benefit to the patient.

As I have said my pre-polio memories are limited.  I could probably dig some up if I were to look at a more intensive hypnotherapy approach in conjunction with some heavy duty regressive therapy but to what purpose.  I don’t really believe that my childhood was that traumatic, just different.  The only other pre-polio memory I have in regards to walking, besides the walk/collapse down the hallway to tell my mother I didn’t feel well, was going to the outhouse with snow piled higher than I was tall.  This was Winnipeg and it was winter

Although we had moved to the city by then my parents first home in Winnipeg had no plumbing.  We had an outhouse.  This is an important detail because one of the ways the polio virus is transmitted in through fecal matter.  Nobody used Lysol to clean their outhouses.  In fact I’m not even sure the floor was ever swept, it was a dirt floor.  The polio virus can live for up to two weeks in a persons body after it activates.  The activation concept is important because a person can carry a latent virus for a long time but it isn’t until it activates that it becomes contagious.  That little detail is even more important today.  With the federal government having cut the Interim Federal Health Program we now run the risk of every new refugee coming from a country where polio still exists to re-introduced it to Canada.

The virus lives in a persons intestines and can also live in a persons throat.  The throat process makes it an airborne contagion and is carried by water vapour when a persons sneezes.  It can also be spread through the fecal matter that we all produce so it is always best to thoroughly wash your hands after changing your babies diaper.  Once the virus is activated a person becomes contagious immediately and can continue to be contagious for up to two weeks after developing flu like symptoms.  Once the virus has run its course the damage is done and the chance of affecting others is over.  One of the problems today is that most doctors don’t know what to look for because there is a belief out there that polio has been eradicated.

With the virus having run its course you are now polio free however you are now dealing with the paralysis created by the virus.  The way the virus does that is by attacking the nervous system in the spine that controls muscle movement.  This is an important distinction because it doesn’t affect the column of nerves that affect sensory (or feeling) factors.  Unlike a spinal cord injury, a polio survivor has sensory ability (feeling).

This is an important distinction.  Paralysis doesn’t just affect the muscles that provide ambulatory functioning.  It affects the muscles that control breathing, bowel/bladder functions, and all of the other muscles that hold various anatomical processes in place.  I had one close friend, now passed, who could actually feel her ribs sagging.  For myself if it wasn’t for the sensory factor I would have bigger issues with bowel/bladder routines.  My muscles in those areas are a little weaker so I rely on the sensory to know when I have to head for the bathroom.  It’s not just about walking, it’s all the other little things that so many people just take for granted.

That ability to feel also cuts back on issues like pressure sores, the ability to walk effectively and so much more.  What people don’t seem to realize is that if you don’t know where your feet land when you are using crutches your balance is really impaired.  I have friends with spinal cord injuries and their issues are so different from mine.  If you don’t know where your feet land you have no idea if there is a pebble there or not.  And a pebble can throw you off balance just as easily as a rock.  It’s these little things.

Anyway until next time.  I’m going to go and enjoy the sun.  In the meantime here’s a little video from the CBC archives (no sound) that shows why we shouldn’t be letting this devastating disease get a toe hold in Canada again.  Enjoy!

Just one man’s experience.

Tribalism – Worlds within Worlds

In many of my posts I have often mentioned “worlds within worlds” or people “living in their bubbles”. This is not meant in a negative way and actually is not all that uncommon based on social anthropology. It is known as “tribalism“.  The Merriam Webster dictionary defines tribalism as “loyalty to a tribe or other social group especially when combined with strong negative feelings for people outside the group“.  Like the “fight or flight” reaction that goes back to the days of the cavemen, tribalism is a genetic left over from a previous time.  It is ingrained in our psyche.  A strong tribalism reaction can ignite our fight or flight mechanism.

I first became aware of this term and its affect on society when I was reading “No Small Change” by Dian Cohen.  That was in the 90’s and the global economy was just beginning to be fully recognized.  Dian Cohen is well respected Canadian economists.  She was joined by the likes of Nuala Beck and Jennifer James.  In fact Jennifer James’s book “Thinking in the Future Tense” became a major tool and background document for me.

Dian Cohen spoke of tribalism from her own perspective and its effect on the economy.  She acknowledged and promoted the need for change in tribal thinking needed in the labour movement and the corporate boardroom.  I prefer to look at tribalism and its affect on social justice issues.  Different segments of our community (tribes) have different concepts of social justice and it is often based on the social strata they live in.  Acknowledging tribalism in any adversarial situation is a good risk mitigation tool and one every advocate should be aware of.

I have dealt with too many people and lost a number of valuable friends due to my insistence on social justice.  It is not that these friends are oppositional to social justice.  On the contrary they tend to be very supportive of it.  However they look at it from their own “tribes” perspective and I failed to acknowledge their tribal views.  Most of these people have spend the majority of the last forty years with the same tribe in Calgary.

Over the past forty years I have lived in Toronto, Montreal, Vancouver and Victoria as well as Calgary.  With almost every move I have also changed (I prefer the idea of built on) careers.  Some of my careers have been as a business analyst for Dunn and Bradstreet in Toronto, a hospital mental health therapist in Calgary and a policy analyst for the government in BC.  My careers have been diverse and my social circles have continually changed.  I have socialized with many tribes but never really put roots in any of them.  With that said I have maintained numerous friendships with people from my past in Calgary.

Many of those relationships in Calgary are well entrenched in their own tribal beliefs.  The longer one is with their “tribe” the more complacent they can become.  You trust your tribe which is normal but you should never trust your tribe blindly.  Every now and then you have to review what is going on in your life to see if your tribe still meets your needs and expectations.  That whole process is almost alien to anyone approaching retirement age except to review their financial situation.

Hell they have planned and worked hard to get to get to this point.  Most people work towards retirement with the idea that it will be comfortable and enjoyable.  Being comfortable is not about focusing on all of the downside of our communities.  There is no enjoyment in focusing on the negative side of our community.  However being ignorant of the issues or outright denial of the issues is not the responsible things to do and that same sense of responsibility is what contributed to attaining that positive retirement plan.

My lack of deep attachment to any one tribe is now taking its toll.  There really is no retirement when a big part of your life has been about social activism.  It is difficult to go from having spend the day with a family teetering on the brink of their own sanity due to the continual fight to obtain treatment for their self-abusive child with autism to having a nice supper with an early retirement couple planning their next vacation to Europe.  There is a huge incongruity in those two tribes even though both tribes have their own merit.  Meanwhile I too often find myself stuck in the middle attempting to balance the two styles in my mind.

This has been a very brief overview of the “tribalism” concept.  I am raising it now because I believe what we are witnessing in Ottawa between the Senators and the politicians is tribalism at its height.  If you look at the definition again you will notice the last part of that definition is “strong negative feelings for people outside the group“.  Not just negative feelings but “strong” negative feelings.  The kind of negative feelings that will lead to a tribe circling the wagons in resistance to any tribal status change when it would be much more constructive to sit down and talk about compromise.

Activists and advocates are really out on their own.  I am seeing that now.  Some of my peers from the 80’s who fought for certain rights and conditions stopped fighting once they had accomplished their goal or satisfied their personal agenda.  Traditionally an activist is someone who is pushing for tribal change which is a continual challenge.  The challenge is continual for numerous reasons but can be compared to aging.  We progress and make changes based on the needs of the time.

We battle for change based on issues like technological change, societal thinking, economic issues, political beliefs, etc but we should never accept change that moves us backwards.  I am now watching battles being fought that I thought had been settled years ago.  People become so comfortable with their tribe that they begin to accept the packaged messages of the tribe as unquestionable reality.  And as we reached that hard worked for retirement we don’t want things that may make our lives uncomfortable.  To me in many cases that is just complacency and that is one tribe I will never join.

So to my advocate friends make your self aware of tribalism.  And to my friends who use wheelchairs, never park in a designated disabled spot is a way that your wheelchair could role away in mid-shift.  In other words have your car door between you and the bottom of the hill.  It’s been my experience, repeatedly, that disabled parking spots tend to be located on the side with the hill.

Just one man’s opinion!

I am Thankful I am a Polio Survivor

I haven’t posted anything for a couple of days due to, not so much writers block, but more because of spaghetti ideas.  And what is spaghetti ideas you might ask?  Well it comes from my old programming days when we talked about spaghetti code.  That was programming code that was so convoluted by the time it was finished it wouldn’t do what it was designed to do.  My writing ideas have been the same lately.  To many thoughts running together but to disjointed to create a focused article.

Last evening I went to my mother’s supported living residence for Thanksgiving supper.  Although she has her own suite she does attend the dining room for suppers.  And there dining room is no cafeteria.  They enjoy sit down table service with linens, fine dishes and silverware.  There food is cooked onsite and the meals are well balanced.  Any of the residence can bring guests for a meal at a minimal cost (like for last night it was $7.50).  For an event like Thanksgiving there are lots of guests but where else can you get a full turkey dinner with dessert and beverage for $7.50.  Most of the residence I have met are very nice people and where else will people refer to me as “this young man”.  But then it is an assisted living centre so most of the residence are over 80.

I was talking with a few of them before supper (many go down for a little happy hour before the meal, yes they have a little bar) and was fielding a lot of questions regarding life in a wheelchair which got me to thinking.  So keeping with tradition here are some of the things I give thanks for.

I am thankful that I am a polio survivor and not a spinal cord injury survivor.  As a polio survivor I have the luxury of having sensory feeling which most spinal cord injuries don’t.  This means I can avoid pressure sores, have no need for catheters and can get out of my chair to walk on my knees if needed.  This is a handy ability to have when you take a look at some of the architectural issues one faces throughout life.

I am thankful I am a polio survivor with a complete set of senses.  There is to much beauty to see in the world to have to be dependent on described video.  There are to many fantastics sounds from music to crickets and loons to not have the ability to hear.

I am thankful I am a polio survivor with full cognitive function.  Many years ago I came to grips with the fact that I will never be totally independent but I will always be able to self-determine.  To me self-determination is far more important than total independence but then very few people, disabled or not, are completely independent.  That’s a marketing myth but it works.  Being able to self-determine means whoever I have to be dependent on are doing what I want them to do and not what they want me to do.

I am thankful I am a polio survivor who had parents that would never let me be “disabled”.  If they had I am not sure I would not be where I am today.  Having survivor polio at age 3 I have never known anything else.  I have never had to deal with the whole “before and after” mental battle that goes on in a persons head following a major physical trauma.  This has always been life so, to me, it is quite natural.  My parents contributed to that by not making me disabled.

Having a disability should never be a competition over who is the “most” disabled.  I don’t care what you can’t do but I am very interested in what you can do.  If we based the concept of disability on what one cannot do then everyone would be disabled in one way or another.

Overall I am thankful to be a polio survivor and the definitive word there is survivor.  Many kids I knew never made it out of the hospital and never made it out of their childhood.  Overall I am thankful I am alive!

Just one man’s opinion!

Revisiting Accessibility…Again

I live in a Calgary riding who’s MLA is a fellow in a wheelchair, Kent Hehr. I have dealt with Kent on a number of issues and I run into him on occasion in the community as he keeps himself very visible (for all of the right reasons). The Beltline is a pretty high density area which makes being visible even easier when there is a concentration of very popular local hang outs.

Kent has recently been very supportive in my own ongoing fight with Alberta Aids to Daily Living regarding what is more important in making a determination for a new wheelchair, my need or their policy. Anyway that’s a discussion for another day. Kent was recently featured in a Calgary Herald article regarding accessibility issues within the Calgary School Board system.

I know, hard to believe but yes there continue to be accessibility issues within the school system. Thirty-seven years AFTER the introduction of accessibility standards for public institutions in the national building code we are, as they say, moving forward cautiously. If the Aldabra Giant Tortoise didn’t use a similar cautious in their mating techniques they probably wouldn’t be facing extinction.

After reading the article I had to give my head a shake and questioned how uninformed this system thinks people are. Is the general public really buying this response from CBE? I sat on committees in the late 70’s and early 80’s discussing these very issues with the school board of the day. But the CBE needed time to “really evaluate the recommendations” so they could move forward cautiously.

I don’t believe that the 24 schools rated as critical were as critical 33 years ago but I could be wrong, I haven’t seen the list. But here we are, over 35 years later, having this discussion AGAIN while some people are reacting like this is a new issue. I can tell you quite personally THIS IS NOT NEW. If you are paying attention to your environment you would probably notice this. Unfortunately many of us have moved on from those times in our lives. My son finished school ten years ago so schools don’t play a big part in my life anymore. In that area I have become a little complacent myself. This re-enforces something I have said for a long time; just because I have moved on to other issues does not always mean the one I was fighting for has necessarily been solved.

From the news article; “But the CBE said it would cost too much to make all dated facilities barrier-free”. Is that really the reason after all of these years? I recall attending a meeting at the CBE’s Disability Resource Centre down in the Parkdale School about three years ago. I was there assisting a family with a child on the autism spectrum, at least that was the belief at that time. But again that is a different story however this does stress my question on how much corporate buy-in the CBE has made to access.

As was my practice I arrive for this meeting a little early so I could scope the place out. Now keep in mind this is the CBE’s Disability Resource Centre of that day, a 50’s style school. They now have this opulent palace that I can look down on from my condo but the average family can’t find an affordable parking spot in order to attend any meetings there. But I digress, I am wheeling around the outside of this school (the Disability Resource Centre….can’t stress that one enough) but I can’t find an entrance with a ramp.

So I wind up sitting out front of the school waiting for the family to arrive. Once they do they go into the school to see if they can find an entrance. Within five minutes I have a school administrator of some sort at my side throwing apologies at me while saying had of they known I was in a wheelchair they would have scheduled the meeting for someplace more accessible.

Now she’s piqued my interest. I, as politely as I can muster, ask her why the CBE Disability Resource Centre, the main centre for all things disabled, doesn’t have a ramped entrance. By this point I had found a side door with a minimum three stairs which I had decided would be my easiest entry point. As I made my way the stairs on my hands and knees to get into this meeting, she explained to me that they did have a ramp but it had been taken down for safety reasons.

By now the family I was attending with had carried my wheelchair up the steps and I was back in it. As she led us threw the backside hallways she points out this broken down plywood structure saying that use to be the ramp. This ramp, and I am being very polite in allowing it that title, was in such a state of non-maintenance the CBE had been ordered to take it down and get it repaired, THREE YEARS AGO. From my perspective having seen many ramps in my lifetime I am not sure what I was looking would have met ramp standards fifteen years ago let alone three years ago.

To me actions speak far more effectively than words. I have heard too many words in my life saying this will be done or that will be changed just to come back ten years later to discover that nothing was ever done. With my eighteen year absence from Calgary it would appear that is exactly what has happened in Alberta.

So good luck Kent you are going to be talking for a long time.

The Poster Child Philosophy

Once upon a time I was cute
Once upon a time I was cute

I was having my morning coffee and catching my morning news when a War Amps ad came on.  The ad shows a cute little girl who, due to a birth defect, was born with only one arm and at about age four is using a prosthetic.  This little girl and her mother are talking with another family who have gone through the same experience.  This is what would be referred to as a poster child moment however it is the kind of poster child ad I don’t really mind because it focuses on peer support.  This poster child approach is not uncommon in fund raising since most of us are aware the cute disabled children, like sex, sells.  This is pretty standard in the fund raising process.

Over the years I have studied this because I was one of those “cute” poster children.  In 1955 I was the March of Dimes poster child and I have used this experience to develop my own Poster Child philosophy.  In 1955 there were not many poster children because there were not that many associations or disabilities types.  Today there are hundreds of clubs, associations, foundation, service clubs, etc that dedicate time and energy to bring some brightness into the lives of families and children affected by disability.

I was able to go to camp almost every summer at no expense to my parents.  Did this do anything to prepare me for life?  Not really but it did give me a camping experience that I may not have otherwise had.  With that said I also attended a number of scouting camps that had nothing to do with my disability but more to do with the fact that my father was our scout master.  I think it is important to note here that in my family, and I have five siblings, I was never treated as disabled.  In fact I was expected to be as active in all household activities as any of my siblings.

We can become what we are told we are!
We can become what we are told we are!

Today any organization I can think of that represent disabilities or causes have a poster child.  It has become good business sense in the non-profit world.  Fund raising has become extremely competitive, is heavily based on selling an idea and nothing sells better than a cute child.  But like anything in life children grow up and all of a sudden they are no longer “cute children with a disability”.  Moving into adulthood is much more complicated for a child with a disability than it is for a non-disabled child.  Unfortunately there is very little planned preparation for these kids to make the transition into adulthood. 

The transition into adulthood is very different for many of these kids and requires specific planning.  Most kids don’t have to think about things like wheelchair (or equipment) maintenance, managing medication (including budgeting for it), and managing attendant care when needed, obtaining employment that will accommodate a disability or accessing the variety of programs out there to assist with independence.  I have been involved with too many families where their child with a disability hit eighteen and was immediately put on a disability support program.  I have also seen too many cases where the last thing the child receives from their high school prior to graduation was help in filling out their disability benefits program application.  In Alberta that program is referred to as AISH.

What is sad is that many of these kids go from a cute poster child to a government supported adult with little or no explanation as to why.  They are left scratching their head not knowing what happened.  Many of those friends they had in school are moving on with adulthood and a life of independence while the child with the disability is left with community organization vying for their participation in a day program.  A day program the organization gets paid for which really relegates the former child with a disability to an adult business product.  Without this product these organizations don’t receive funding.

Now I am not saying that there isn’t a need for some of these programs or organizations but I do believe that more transition support should be available to move from being a “cute child with a disability” to an adulthood that maximizes the opportunity for independence.  This requires planning, time and thought.  It means moving away from the usual “norm referencing” process we embrace to a “criteria referencing” process.  We need to support these kids with transition planning that looks at the criteria that needs to be met to help maximize their independence.  Maintaining the norm referencing process we are so comfortable with just puts up more barriers for these kids by creating unrealistic expectations.  It’s like comparing apples to bananas.

So as we capitalize on their cuteness for fund raising purposes we hit a big deficit when it comes time to transition them into a productive and independent adulthood.  We do all we can when they are cute children to ensure a relatively pleasant childhood but then drop the ball when they reach adulthood by trapping them in programs that are married to poverty level subsistence.  To me that just isn’t right!

I do know that I grew up with a lot of other kids that had survived polio.  What disappoints me is how a number of us went on to live very independent lives while just as many wound up on some government support program.  But I also know from personal experience that had I left it up to those around me I could have been one of those on government support.

In closing ask yourself this: will I be as supportive to the idea of independence for an adult with a disability as I am when I send a donation to an organization because of a cute child with a disability?

Juts one man’s opinion.