just the way you are

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The older my son gets, the less I am interested in fixing him.  This has been a gradual dawning over the past 15 years, since he was first diagnosed with Down syndrome.  Our family now lives in a bubble that we’ve carefully created around us.  We surround ourselves with people who believe in him.  We purposely chose his high school where educators believe he can learn and grow.  If friends and family are uncomfortable or embarrassed by him they are no longer welcome in our lives.  We have lost many people. Our world has shrunk to the size of those who accept my son as he is.

It was not always this way. When my son was younger, I dragged him to many therapies and interventions.  I think this is something all families go through, which stems in part from the pressure we feel from the medical system to fix our children.  I was determined to have the best child with Down syndrome ever!  I also wonder if part of my need to change my son had to do with my own discomfort with his disability.  What’s the fine line between helping him reach his full potential and making him ‘normal’ so he will fit into the typically-developing world. This meant trying (and failing) to erase his extra 21st chromosome.  If I truly believed that disability is a natural part of the human fabric, why was I trying to change him?

When my son was born, I wanted to change him to be accepted into the world.
Then I wanted to change the world so he would be accepted. 
I finally realized that the only thing I could change is myself.
-Unknown author

This week I was at a CHILD-BRIGHT Annual Meeting in Montreal.  I stepped out of my bubble into the real world of academics, clinicians and researchers.  I realized how soft and warm my self-selected bubble is.  Not everybody feels that people with disabilities are fine just the way they are.

CHILD-BRIGHT is a collection of projects dedicated to child health research for children and youth with a brain-based disability.   Most of the research is conducted within a medical model.  I wrote down snippets of the language used by the researchers:

‘Quality of life’  ‘Deficits’  ‘Intervention’ ‘Problems’ ‘Bad Outcomes’ ‘Subjects’ ‘Populations’

I believe in my heart that most researchers are passionate about what they do because they want to help make life easier for our children.  I do appreciate their dedication to their work.  But I wonder if the dollars would be better directed to creating an inclusive and welcoming world for people with brain-based disabilities instead.  What my son really needs is a less-hostile world.  He needs people with influence to advocate for disability rights, inclusive education, employment, housing + basic assured income. (Advocacy has traditionally been a family’s responsibility.  But we are tired, so terribly tired, and we need help).

I’m not diminishing the importance of research.  But I wonder if we can expand the scope of research to include what matters to families and people with disabilities beyond chasing a cure. Maybe researchers could support families to celebrate (and help the world at least accept) our children just the way they are.

intelligent lives

The year after our baby boy was diagnosed with Down syndrome, colleagues at my husband’s workplace – a department at the Ministry of Health – were gathering donations in my son’s name for our local Down syndrome awareness walk.  Peggy, one of my husband’s co-workers, was asked if she’d like to donate.  She responded:

Why should I contribute to someone who contributes nothing to society?

Fifteen years later, that comment still stings me like a slap across my face.  As a new mom, I was naive as to how the world values – and does not value – people who have disabilities, including little babies like mine.  Peggy was my rude wake-up call.  (There is a tiny bit of irony that someone like Peggy worked for the Ministry of Health).

Peggy’s response begs these questions:  What determines a person’s worth?  Is it how much they contribute to the economy? Is it how smart they are? Is it their IQ score?

Last night, the documentary Intelligent Lives was screened by UBC’s Centre for Inclusion and Citizenship.  Dan Habib is a well known filmmaker and disability-rights advocate.  His youngest son Samuel  has cerebral palsy and was featured in his first documentary Including Samuel.  I watched this film almost ten years ago, when Aaron was five years old and it struck me then how much the inclusion of Samuel in the elementary setting benefited the other children in the class, not just Samuel.   Habib has a TEDx Talk on this same subject.  Research backs theory this up – for references, see my post What Inclusion Means to Us.

There are many people like Peggy in the world who feel that disabled people like my son are a burden.  Intelligent Lives challenges this ableist view in two ways – first by following the stories of three young adults with intellectual disabilities as they travel through their lives searching for belonging.  Micah, Naieer and Naomie’s stories are human stories, as they figure out their own identities along the way.  Woven in with their tales is actor Chris Cooper’s steady narration explaining the dark history of using IQ testing to determine potential.  As he says, low IQ was a one-way admission ticket to an institution.

IQ testing and scores have been used in the past to set immigration policy, determine a soldier’s rank, institutionalize people with disabilities and to support eugenics, including those policies in Nazi Germany.  What is particularly chilling is that IQ testing and scores are still being used today, in 2018, by our governments to determine need and ability.

I’ve been railing against IQ testing for people with intellectual disabilities for a long time.  In the Province of British Columbia, a child with Down syndrome cannot access respite funding or therapies or programs run by disability support agencies unless the families prove their child has an intellectual disability.  This is done through psycho-educational testing, which includes an IQ test.  Wait lists for this publicly-funded testing run from months to years or you can pay $3,000 out of your own pocket to have the test done by a private psychologist.

I have to prove to the government that my son with Down syndrome has an intellectual disability.  If he tests too high – over 70 – he will be turned down for services, even if he ends up with a score of 71.

Habib’s film strongly attests that IQ tests meaningless – and even worse – that IQ testing is racist and ableist.  The tests are not adapted or modified when they are administered to children with intellectual disabilities, which means my son takes a test where he is set up only to fail.  To me, IQ testing treads on my son’s dignity as a human being and is a stupid way to prove he needs therapies and that our family needs support.

IQ scores serve only to put people in boxes.  Intelligent Lives points out that people have multiple intelligences that we need to broaden our understanding of what intelligence actually is.

The deeper question for me is why do we have to prove that people with intellectual disabilities have value and worth in the first place?

If I could travel back in time, I’d march right over to Peggy’s cubicle and tell her this: Having an advanced education or a fancy job or even a high IQ does not make you a better person than my son.

My son has value because he is a human being and that’s simply enough.