“I didn’t ask anyone to make me a poster boy, because poster boys always end up on a dart board” – Anurag Kashyap
Today is Family Day in BC. Yesterday was the 2017 annual Variety Show of Hearts Telethon. What do they have in common? They are both family focused however they are designed to address temporary issues that are constantly in flux. Families change and telethon poster children change. I have issues with both.
I was a poster child many years ago and I had a family many years ago. However we age and life, like circumstances, change. Although I do not deny the good intentions of telethon’s they do bring me some grief by becoming more of a vehicle to alleviate social guilt rather than address a growing issue. Yes they help a handful of families but there are way more families who never see any of that help.
Too many agencies now use cuteness and touching stories to remain in business. Now I must give some credit where credit is due and the Variety Show of Hearts Telethon did raise $5.5 million dollars this year. I am not saying that the Variety Village does not provide a much needed service but they do set up a series of unrealistic conditions. What happens when that same cute child outgrows the services provided by an organization like Variety Village by becoming an adult in need of care?
That brings us to Family Day. These are the families who have to battle everyday just to get their disabled child hopefully to adulthood. And at 18 is when the rubber hits the road. Their child, regardless of cognitive or physical ability, is now an adult and all of those services they fought for disappear. Why, in 2017, is the federal government even having to consider something as basic as “accessibility legislation“? This something many of my generational peers thought had been accomplished thirty years ago.
And from my generation’s point of view it was. What many of my generation of activists fail to grasp is the complexity of the new world of disability. We grew up in a time when a disability was relatively straight forward. Now we live in a time where technology and improved healthcare practices help people (and children) survive situations that in 1980 could not have been imagined.
Children who would have never survived many of the difficulties of birth we now see are not only surviving but thriving based on the good intentions of groups like Variety Village. They are surviving based on hundreds of thousands of dollars worth of cutting edge technology being introduced into healthcare. Who wants to tell a parent that their brand new bundle of joy can only survive if months of expensive neonatal care is initiated? I don’t want to sound cruel but that is the reality of todays disabilities.
Those parents we dedicate one day a year for, Family Day, are not thinking about what will happen in 18 years. They are looking lovingly at that underdeveloped bundle of love swathed in sterilized gauze and, like any loving parent, are prepared to do whatever is needed to keep that child in their life. And I can’t blame them. Love, as they say, is a fickle mistress.
But what happens when that same child ages out of the system. That is the realization of what is happening now. There is a new generation of disability out there that now face challenges my generation could never have conceptualized. Most of us were able to self-determine, we could be our own advocates or turn to an agency dedicated to help with independence. That is not the case today.
Now families have to turn to agencies that provide some form of care. The families have to “hope” (a wonderful concept) that some form of government compassion will still exist to offer financial assistance for the growing “care industry”. Those types of disabilities have become a product for job creation in a minimum wage environment.
The reality of a Family Day quickly weans when one has to move on with their own life. If they don’t they quickly become a unit of caregivers which is the new reality for this new generation of disability. I do worry for that generation because as someone who has spend their entire life with a disability I know how difficult it can be. Sixty-three years after being a “poster child” and I still have difficulty finding an accessible apartment. That’s reality!
Happy Family Day, enjoy it while you can.