Monday, January 16, 2012

Ought To Be

"All I'm saying is simply this, that all life is interrelated, that somehow we're caught in an inescapable network of mutuality tied in a single garment of destiny. Whatever affects one directly affects all indirectly. For some strange reason, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the interrelated structure of reality." Martin Luther King, Jr.

It doesn’t take long.  As parents of children with differences, we tend to cut to the chase rather swiftly once we’ve understood that we are talking to one who knows this way of living.  I ask bolder questions, I lay more of my own truths on the table, eye contact is extended and personal space contracts slightly.  While we tell ourselves it’s because this person is a “safe” person, this is one who gets it; I believe there’s a bit more than that.  For me there is, anyway.  Every single stone must be turned over and examined. I cannot afford to leave any as they are.  It would not be fair to her.

And each person I meet with perspective on disability is such a stone.

I ask, I answer, I wonder if this other person holds a clue, a key.  Will this other mother put something in words that shed enough light for me to act?  With this dad describe something in our lives in such a way that clarifies for me my next move?  Do they know someone who knows someone who I should talk to? Will their counter to my view set me on a new, more direct path?

Opportunist, yes.  Not void of compassion, understanding or appreciation for mere connection. Not unsympathetic or single-minded or lacking reciprocity.  But still.  The stone must be turned.

It must be turned because the vision we have formed for her is not one of staid, smiling subsistence.  Her character, her strength, confidence and humor, her clear preferences and affinities, her complexity and wit, her superpower of creating the circumstances she wants, all of that and more makes the too common projection for those with intellectual disabilities – a life of adult daycare or superfluous workshop “work” for pennies, possible over-medication, once per week bowling, wide open hours of nothingness, endless receiving, gaping caverns where the act of giving should be, a life peppered with patronizing pats on the hand meant to evoke spiritless smiles – who she is right now makes that life absolutely unimaginable, impossible for her.

She requires more simply because she is human, yes; because to be a full citizen of the planet means to connect to and contribute to the rest of humanity.  But I am often surprised when I am faced with description of a young child with differences in ability similar to my daughter’s and I am told with 100% assurance that this child will never be independent to any degree, will never live on her own, will never engage in work that means something to her.  What then, I want to ask, will this seedling who is already excused from a life of intention, what will she actually do as an adult, then?  What will she do as a child, for that matter, if there is no trajectory, no vision, nothing to prepare for?  How are hours of childhood spent if not in laying the foundation for a self-designed future - to the extent possible - through social, ethical, functional and academic experimentation?

What ought this child to be right now, then?  As she grows?

My daughter will not “be my constant companion,” as is so often offered as a consolation by strangers when they observe the alternative communication between she and I or coupled with their shocked reaction upon hearing the answer to their inquiry about her age.  She will not, in fact, “always be with me.”  “May God bless you for your trouble,” they tell me with heads tilted to the side, toppling with the load of generous intention.  Alas, they have it backwards. It is not her life that is contingent upon my desire for companionship, but rather my daily occupation that is contingent upon what both my daughters require to ensure they lead the healthy lives they intend to lead as adults.  May they be guided in their choices, for I have long since made my own. 

Go ahead; ask her what she wants to be when she grows up, as you might any 8 year old.  Though it may take her a while to express it and you may lack the ability to understand her response, she has an answer.  She knows she ought to be something pretty amazing.

My questions will not stop. Stones will not cease being turned.  Trees will not cease being shaken.  Both of my children are destined for feats untold, as your children and your neighbor’s children are.  An obstacle for my child is an obstacle for your child.  An obstacle for your child is an obstacle for mine. “Whatever affects one directly affects all indirectly.”

May each of us see where potential greatness on any scale is being thwarted, may we call oppression what it is.  May we speak against it.  May we act to end it.

Wishing you a provocative Martin Luther King, Jr. Day.


  1. Such a moving and powerful piece, very MLK-esque. "Alas, they have it backwards" -thank you for this stone.

  2. Yes, they do have it backwards. I too was told my son would never do this or do that when he was diagnosed. Now no even in middle school yet he has decided he wants to follow in his daddy's footsteps and become an engineer.
    Our kids are so strong, their lives have meanings, they have dreams to live and see fulfilled. Never allow anyone to set limits upon their abilities and dreams.

  3. I agree with Nanette, don;t let anyone interfere or set limits to their dreams. Remember, they are special, so what they will show to the world are special too. -Sarah-

  4. I discovered your website by accident, and I’m stunned why this accident did not came about in advance! I bookmarked it.