In Pursuit of Participation

With all stories of hypercompetitive parents yelling from the sidelines of soccer and baseball games, imagine me as a parent just pursuing participation.  At first blush it must sound like a sure sign of underachievement.  “That parent’s kid will never go to Harvard or be a Senator“ – so perhaps by that definition I am an underachiever.


“Pursuit” is a word embedded in the bedrock of American doctrine – the Declaration of Independence.  Without the ability to participate one cannot begin to pursue happiness – so it seems like a logical starting place.  Participation is the very first step in the pursuit of happiness.  Let me in the game coach.


Talking about participation rather than prosperity or winning is not the function of my low expectations, but rather seeking to create kinetic energy around the very first step in the process.  And it’s the vital step that distinguishes America from all of the dictatorial regimes that are experiencing such political instability today.


It is amazing how much more people with cognitive disabilities are able to participate in today compared with just thirty years ago.  And it has grown by leaps and bounds since my daughter was born in 2008.  The dreaded healthcare law, with all of its flaws and remaining issues, gives her a path to participate in private healthcare rather than depending on Medicaid – which in turn gives her a path to greater achievement and financial independence.  Not a month goes by without me reading an article about a new college program for adults with cognitive disabilities.


And with the budget cuts, it is so clear how fragile that participation is.  Brianna’s participation, from a policy perspective, generally requires exception processes – IDEA to open the door to mainstream classroom, a healthcare law to allow her equal access to health insurance, discrimination laws and special programs to help create job opportunities, and special college programs to allow her to partake in higher education.


Her needs far overshadow her political voice.  And so participation relies heavily on public perception and public decency.  It relies on each subsequent generation seeing her and other with cognitive disabilities as full human being – as being equally deserving of basic human dignity, respect, and treatment.  And in an environment where corporations and scientists see a goldmine in creating tests that help find people like Brianna in the womb as early and easily as possible – an environment where she is defined as a s “risk” to a pregnant mother – public perception can balance on a tight rope.


Brianna is a 3 year old, she is part of a group of just 400,000 Americans with DS, and she already has the unenviable job of educating all of us that she is important as well.  It’s an honor getting to walk down this road with her.  It’s an honor to take part in an important civil rights movement.  But, being part of a movement like this is like being on the slow train.  Everything takes so much longer than we would like and patience and persistence are required in the pursuit of participation.


About liftedupbyds

I am father of a child with Down syndrome on a quest to bring greater positive awareness and greater opportunities to people with Down syndrome.
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