I See You

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Aaron + his mama. (Shared with his consent).

Last night, Aaron and I got fancied up and went to out to a play. He wore his suit jacket and a black tie and I changed out of my regular mom jeans into a green velvet dress. This was a big occasion for us.

This is the Point was playing at the PuSH Festival at the Cultch Historic Theatre in Vancouver. This play initially caught my eye because the two lead characters, Tony Diamanti and Liz MacDougall, are actors with cerebral palsy. They share stories about their own lives along with Dan Watson (and Christina Serra, represented by video), the parents of their nine-year old son Bruno, who also has CP.

Aaron doesn’t have CP; he has Down syndrome. But I’m not sure the difference in diagnosis matters that much – he lives the common experience of being disabled. He enjoys his grade 10 drama class at school and is becoming more interested in live theatre. A play featuring actors with disabilities is an unusual thing. (It shouldn’t be. But it is). I think it is my job as his mom to show him what is possible.

This is the Point is a real-life montage of stories, shared through live performances and video vignettes. It includes audience participation – we were encouraged to read Tony Diamanti’s words out loud as he pointed to letters on a communication board. I loved this invitation to be a part of Tony’s world – a contrast to the common notion that disabled people must always fit into our abled-bodied spaces.

Before the play began, Dan wandered about the audience handing out Hershey kisses. He then announced, ‘We do things at our own pace,’ to set the tone for the show.

The play is a peek behind the curtain of having a disability and being parents to a child with a disability. It gave space to stories that are told but not often heard or acknowledged by the general public. The play explained communication devices, talked about consent (or lack of it) and touched on abuse.

I think that stories can teach you something new or validate what you already know by creating a mirror for your own experience.

Here’s the something new from This is the Point: disabled people don’t always communicate as we do, they have a sense of humour, curse, are sometimes horny, have sex, fall in love and drink vodka. The question for me is: why should this be new to me? How does being surprised by this reflect on my own misconceptions about adults with disabilities? As human beings, we are all the same. And we are all different too.

This is the Point offered a commentary on my own experience as a parent too. Dan recounts a heart-breaking scene from his local playground, where the neighbourhood kids keep asking about Bruno, over and over again: What is wrong with him?

“Why do I have to keep explaining why I love my son?” asks Dan, exasperated in response.

I’ve felt that pain too. Playgrounds are an especially cruel place, a petri-dish for children whose parents who have never to bothered to explain about disability or kids who are different. At another point, Dan exclaims, ‘Suck it doctors!’ in reaction to the doctors who told him everything his son wouldn’t do. I almost stood up on my chair and cheered.

After the final applause, I leaned over to Aaron and asked what he thought. I wondered how it felt to see disabled people in a play.

“Good!” he said enthusiastically (although he hid behind his suit jacket during the ‘sexy’ scenes). He was eyeing the actors, who were all still on stage chatting with audience members.

‘Do you want to meet them?’ I asked. ‘Yes,’ he said, ‘but come with me.’ ‘You go,’ I suggested, always eager to pull back from my hovering mother role.

He took a breath, marched up to Liz MacDougall and extended his hand. They looked at each other, smiled and shook hands.

‘Did you say anything?’ I asked when he returned. ‘No, I shook hands,’ he said. Somehow that handshake – the congratulations, the job well done, the nice to meet you, the thank you – was simply enough.  Aaron does things in his own way and that is how it should be.

Thinking about the play, I thought how rare it is for Aaron to see himself reflected in anything other than fundraising or awareness campaigns. We need more stories like This is the Point in our increasingly polarized world. Not as ‘special’ stories, but as stories as a matter of course, on regular rotation, in the media, performing arts, literature and film.  I promise that when I find them, I will amplify them.  And you can too.

You see, if you open your eyes and bear witness to stories that are different from your own, you never know what you might discover (mostly about yourself).  Bravo to the This is the Point cast and crew.  You made your point and you made it well.  xo.

Far from the Tree Documentary

I lug the book Far from the Tree, all 962 pages of it, around with me to family meetings and client sites at children’s hospitals and disability organizations.  It is a meticulously researched and beautifully crafted book on parenting, and more importantly, on love and acceptance.  Andrew Solomon has written a masterpiece.  This book has moved me so much that I titled my essay that I wrote for the New York Times Far from My Tree. (It is a piece written about my punk rock son, inspired by Solomon’s work).  Solomon has helped me dig deep about parenting all three of my children, who are different from me in their own unique ways.  It made me ask:  did I really have children to create versions of Mini-Me?  Or was it my job to unconditionally love, support and accept them to be full versions of their fine selves?

I’ve been scrounging around to find a way to bring the Far from the Tree Documentary to Vancouver.  GREAT NEWS.  It has been released on Netflix Canada.  If you love or work with someone with a disability, please take 90 minutes of your time and settle in and watch this exquisitely crafted film by Rachel Dretzin.

Solomon has broken the fourth wall to tell his story as an author and what writing a book about parents, children and the search for identity meant to him.

Writing this book set me free.  It broke me out of the narrative from my childhood. -Andrew Solomon

His parallel story as a gay man is gently presented along with stories from Jason, Jack, Trevor, Loini, Leah and Joe.  Jason is 41 and has Down syndrome, like my 15 year old son.  I watched the segments with Jason closely. He’s the son of Emily Perl Kingsley, who famously wrote the essay Welcome to Holland.  (Anyone who has a child with a disability has been gifted this essay by well-meaning friends).  Jason speaks many truths.

Here in reality, everyone is different. -Jason Perl Kingsley

Jason is right, of course.  We are all different but us typically-developing people are terrified of difference and shun this reality. Far from the Tree examines this paradox with little commentary and judgment.  The stories are strong and stand on their own.

I especially loved the film for the space it gave to the people with disabilities to do the talking. Us parents normally take up a lot of airtime, when we should be making room for our loved ones to speak in any way that they can.  I’m learning this lesson slowly as my son gets older.  His story is different than my story.  He lives with disability.  I do not.

Joe is a philosophy professor, has dwarfism and is eloquent with his words.  “What body you are in has everything to do with your perspective in the world,” he says.  “It surprises people when I indicate that I’m not suffering.”

Far from the Tree offers up a lot to think about.  As Joe points out, physicians see normality as the end goal.  But why is that?  To what lengths do we chase the normal?

The dad of Jack, a young man who is autistic and non-verbal, tearfully says about his son,  “He’s abnormal in a really good way.”  Far from the Tree rightly challenges the concept of normal and offers up the question:  what makes us human?

I’ve always thought the disability community and its allies could learn much from the LGBTQ2S world.  As Solomon asks, drawing a comparison between the two worlds:  Is defectiveness a matter of perspective?  How does illness become a celebrated identity instead?

How do we decide what to cure and what to celebrate?  -Andrew Solomon

I wept at the tenderness of this film: the scene of Jason at the museum with his mom, the image of him sitting on his back deck with his two roommates.  Andrew Solomon walking arm in arm with his father, Trevor’s family gathered around the video screen to talk to their incarcerated son.  Loini meeting people like her for the first time at the Little People’s convention, Leah and Joe dancing quietly together on a rooftop.

I thought about my own instinct to protect my son to the point of overprotectiveness. I thought about all the therapy we subjected him to in his early years.  I thought about how hard he tries to fit into the regular world, and what joy he finds with other people with Down syndrome.  I thought about fixing and curing vs. love and belonging.

Far from the Tree, the book, and now the movie, has made me think about all this in a good yet hard way.  I thought about my son and how, as the movie says, he has his own mountains to climb, which aren’t my mountains – they are his mountains.  I thought about how I can support him to do that.  I thought about how it is also my job as his mother to set him free.

What am I looking for from any book or a movie?  I want to be surprised or validated.  Far from the Tree magically does both.  Through stories, it asks many questions that only you can dig deep and answer for yourself.  That’s what good art is all about:  to see another way of reality that is not your own and to help you question what you think you already know.  Far from the Tree is poignant storytelling at its best.  It touches hearts to change minds.

Pura Vida

I wish that every new family who finds out their baby has Down syndrome could see this goofy little video.  I wish that every physician who discloses a Down syndrome diagnosis would watch this too.

This is my son Aaron boogie boarding in Costa Rica last week.  Aaron is 15 years old and has Down syndrome.  He also gleefully jumped off the second level of a boat into the Pacific Ocean (four times) and went for a long hike in the jungle where we encountered a troupe of wild capuchin monkeys.  (That was AMAZING). These were all hard-fought victories for him.  It took many years of swimming lessons for Aaron to be confident enough to put his face in the water, never mind jump off a boat.  Even five years ago, he’d balk at the notion of going for any kind of walk by sitting on the ground and refusing to budge.  It has taken supportive community support folks, Physical Education teachers, Special Olympics, a move to a warmer climate and many meandering walks to the grocery store to get him to the point of hiking in the jungle.

Pura Vida is a popular saying in Costa Rica.  It roughly translates to ‘a slower life’ or a ‘pure life.’  A more literal translation from Spanish is ‘nothing but life.’

While Aaron is not on this earth to inspire us (as explained well by the late great Stella Young), he does live a full life.  I did not know this was possible when he was first born.  Everybody told us how hard life would be, but nobody told us about the Pura Vida.  Our family has made damn sure that Aaron lives a good life (and we do too, through our fortunate association with him).

How I wish I had a crystal ball during the dark time of Aaron’s diagnosis almost 16 years ago to catch this little glimpse into his future.  How I wish that instead of being handed that stupid book about every possible thing that could go ‘wrong’ with babies with Down syndrome that I had been connected with another family with an older child to see that our lives were not over. In fact, Aaron’s diagnosis offered us the beginning of a new life instead.  Yes, in many ways having a son with an intellectual disability has made our lives slower. But a slow life is not a bad life.  It is just a different life.  And don’t you think we all could use a sprinkling of a little Pura Vida too?  xo.

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.