Monday, October 28, 2013

The Torches And The Pitchforks

It’s been over a month since I wrote anything of substance on either of my blogs.  Down syndrome awareness month is nearly gone; there’s been so much going on in our real life that thoughts are very cluttered, and the focus I need to write has been missing in action.  Still, I've been reading, and this is an issue that’s been chewing at me for some time, and waiting for clearer thoughts hasn't helped me deal with the feelings involved, so I've opted to just spew it out as best I can.  I realize I’m off-message, and maybe even off-side; the tone and voice of this piece is going to swing all over the place, please bear with me.

The Royal Family had been visiting the Zoological Garden of Magical Beasts and Creatures and been having a lovely day.  When they entered the door of an eatery to get some lunch, pushing the Lightning Kid in a stroller, two unruly boys tried to push past them to get in first.  The timing was bad, as the whole struggle caused the stroller to get wedged in the doorway.

“Excuse me! You have to wait.” intoned the Queen in a polite but firm voice.  This was ignored by the boys who proceeded to further shove the stroller uselessly, and were beginning to try to clamber over it.  The King grabbed the hood of the lead boy’s cloak and yanked him back so they could enter in peace.

Later, the King asked the Queen what she had thought of his actions, knowing they seemed rash. While she understood them and basically condone them, she worried about how they would have been perceived by the boys’ parents.  While she had a point, the absence of a guiding parental hand was really the cause of the problem.  The King took the view that his method was much gentler than the lesson that life and the universe would teach them eventually - if anything, the parents should be thanking him for trying to correct their path.

Life isn't fair, and the universe isn't going to bow to your whims as if it revolves around you.


Being a family like the Royal Family isn't like being any other family.  Except when it is.  Families with children (or even adult ‘children’) with the same condition as the Lightning Kid struggle for acceptance within society.  Where that struggle encounters resistance defines the notion of ‘ableism’.  And where hate, discrimination and abuse are encountered, they need to be opposed vigorously.  This could not be disputed.

And yet, many of those who decry Ableism seem to be able to find it anywhere.  Anything that identifies someone who had a disability as being different makes them ‘other’ and alien to the rest of society.  Children without legs who still participate in foot races are praised for their courage, and this is considered bad because it puts them on a pedestal, and thus separates them from any other child who might like to run.  Making comparisons on how mentally or physically a child should be by a certain age or time frame creates expectations that could exclude those who don’t meet them.  Most of the time these attitudes were shown by those meant well and didn’t know better, yet fingers continued to be pointed, rooftops were shouted from; torches were lit, and pitchforks were sharpened.

If the King was vain about anything, it was his intelligence; he also prided himself on being able to empathize and see the points of view of others.  Still he found himself utterly confused by the messages being sent by those he should have considered peers.  Participating in a foot race when you don’t have feet is HARD and it does take courage - more than it does when you do have feet.

Yardsticks and measures lose their value when they exclude and push people to the margins, but at what point does eliminating the “should” from the situation sacrifice the “could”?  The Royal family generally felt they should reach for the stars, if they came up short, they’d still catch the moon.

It really began to sound like the war on Ableism had an end strategy of a world where anything you could or couldn't do was irrelevant; while they were working on that, they might want to hope for the fountain of youth to live forever because that’s how long it would take to achieve the goal.  Being a family with a kid like the Lightning Kid is different than being a typical family.   WE ARE OTHER. There are things we’d like you to know about us and understand.  It is a struggle to gain acceptance, but calling the more benign forms of ignorance a word that ends in ‘ism’ evokes connotations of hate, which seems like a good way to make enemies, rather than allies or at least further enlightenment.  Elbowing your way through an unfair life in an uncaring universe might not provide the desired results after all.

The King could appreciate differing opinions, in fact, he cherished them knowing that a community with only one voice was no community at all, it became a mindless hive.  Inclusion of all within society was a noble goal, and one hard to attain.  It could be that calling out every instance that distances those with differences in their abilities as wrong is the correct way to achieve the wanted conditions in our civilization.  The King has no way of knowing; he is merely a father who wants what’s best for his son.  If you experience the kind of love where you would do anything to provide, protect and promote someone’s well-being, you can’t be afraid to ruffle a few feathers, even within one’s community.  Friction should not be feared though; it’s the grain of sand that makes the pearl, after all.

Wednesday, October 16, 2013

The Lightning Kid Turns Two!

Another chapter will be published soon.... in the meantime, Happy Birthday Little Prince!

And how old are you turning?