Genetic Discrimination is a Real Thing

I have taken a few days to reflect on this column that was published in the Globe and Mail on Tuesday, called Genetic Testing Bill Perpetuates Myths and Fears.

I’m still scratching my head over this piece’s single-minded approach. There’s no perspective offered from the community that is affected by genetic testing, only this sarcastic comment:

As Timothy Caulfield, the research director at the Health Law Institute at the University of Alberta, notes, there have been a lot of apocalyptic predictions about the evils of genetics: The decoding of the human genome (in 2003) has led to fears about designer babies, armies of clones and pervasive discrimination that creates a genetic underclass.

It is here that I must loudly protest.  My son has a genetic syndrome.  He and others in his community have experienced discrimination their entire lives, beginning with the health system where some physicians butcher the disclosure of a prenatal diagnosis to women, moving to societal discrimination directed towards my child with a genetic difference, manifested in the simple drying up of birthday party invitations and the more serious bullying in school settings.

I realize this column is about employers and insurers utilizing genetic information for discrimination.  So let’s move away from the real life examples of discrimination into the policy realm, shall we?  In our lived experience, here is where the discrimination resides:

Health care policy
Health services administered by our publicly funded health system vary wildly province to province depending on your genetic diagnosis. In my son’s case, he’s not ‘disabled enough’ to access publicly funded respite, home care programs, speech, physical therapy or occupational therapy services.  If you are fortunate enough to have money, you can only access these health services through the private system by paying out of pocket for services for your child.  It is here that the policy interpretation of the Canada Health Act fails our children.  Plus, we have stupid policies about IQ testing used to prove health care need.  That’s not discriminatory, is it?  Or is it?

Education
Well, if you want your kid with a genetic difference to learn, you’d better be willing and able to cough up the funds for private classes (or private school) because while the inclusive policies in our public education system are written to sound fantastic, there seems to be no measurement informing us how those policies are executed in the classrooms.   Again, here is an example of inconsistent application of policy in real life.  The school can’t teach our son to read, so the last batch of private programs cost us $960 for 12 sessions.  But that’s ok, right?

Social Services
Are you a parent of a child with a genetic difference and needs to or wants to work?  In British Columbia, that’s too bad!  Policy for supported childcare spots dictates that you require extra funding for your child to access childcare, and that funding is limited and also entails a waiting list that is years long!  After age 13, there is no childcare at all because everybody knows that a kid who is 13 can stay home by themselves, right?  Oh wait, maybe that’s not true if you have a kid with a genetic difference.  Oh well, too bad for you.

Families get pushed deeper and deeper into poverty because our childcare policies are not inclusive of those kids who need extra support.  Plus, adults with genetic differences are denied a livable income by our governments and my own provincial government is even so petty to take away people’s funding for bus passes.  But surely this isn’t ‘pervasive discrimination’ is it?

But Professor Caulfield tells us otherwise:

“There is little evidence to support the idea that genetic discrimination is a big problem. If it does happen, it certainly doesn’t happen on a scale that would classify it as a pressing policy dilemma,” (says) Prof. Caulfield. 

Maybe it isn’t a ‘big problem’ or a ‘pressing policy dilemma’ because people experiencing genetic discrimination are too preoccupied to speak up because they are trying to survive in the harsh landscape left in the aftermath of Canadian health care, education and social services policies. Maybe the voices of people who have genetic differences are lost in the sea of experts, who can grab a microphone more readily than someone with an intellectual disability or a speech impairment.

I’m just a mom with a BA in English, so let’s conclude with the words of Atul Gawande, who is a Rhodes Scholar and has his M.D. from Harvard Medical School:

The mistake, then, is to believe that the educational credentials you get today give you any special authority on truth.

Is there such thing as genetic discrimination?  May I respectfully suggest that instead of making broad-sweeping statements that genetic discrimination is not a big problem, you go to the source of truth:  the people themselves.   Because policy analysis is meaningless without combining it with the lived experience of real people.

inclusion or connectedness

IMG_0175

a typical photo of my not-so-typical teenager

Aaron is heading to high school in September.  This transition has caused me a great amount of personal grief – some of which is because of my anxiety around the switch of schools, but mostly because he is moving from a model of inclusion to a model of special ed classes.  We have fought hard to have him included in his community school setting for the past 11 years.   This has been exhausting work, but don’t think I haven’t noticed the erosion of inclusion over the years, starting in grade 3, when he spent most of his time in the principal’s office (this was an exceptionally bad year which culminated in a change of schools), to more and more time spent in resource rooms, with other kids with ‘funding,’ with Educational Assistants, and gravitating to hanging out with considerably younger kids at recess time. His peers pretty much left him behind in the dust, and while I can (and have) railed about this in the past, this is his – and my – reality.  Despite my constant pleas to provide adapted curriculum, delivered in the regular classroom, teachers struggled with figuring out ways to include Aaron as he got older and his gap with the grade’s curriculum widened.

How I wish that all teachers were educated to be special ed teachers so they had the toolkit to teach all kinds of kids – disability or not.  How I wish their classroom sizes were smaller and they had more prep time to adapt lesson plans for kids needing extra support.  This is not the case in British Columbia (nor Alberta, in my experience).  It is what it is.

Today I visited the special ed program in his new high school.  I arrived right after lunch, and it happened to be the students’ mindfulness time, called MindUP.  This involved a few minutes of listening to some beautiful classical music, followed by a guided meditation led by one of the Educational Assistants.  I stood with my eyes closed at the back of the class, basking in the peace.  A small epiphany floated by in my clear head.

What if my past discomfort with having Aaron in a special education class was due to my own discomfort with kids of differing abilities?   What if I had been dismissive of other kids with disabilities, as so many other parents of typically-developing kids are of Aaron himself?  What if I thought he should be in a ‘regular’ classroom to force him to act as ‘non-disabled’ as possible?  This awareness hit me like a sack of bricks, my eyes stung with tears and I hung my head in shame.

My past year working at a children’s hospital that cares for and serves children with disabilities has been a gift to me.  There, I have met many awesome families who have super children with different kinds of disabilities.  It has been an honour to be welcomed into their lives.  In getting to know kids who have CP, Autism, rare syndromes, and brain injuries, I have confronted my own values and feelings about kids with things going on other than Down syndrome.  This has been both humbling and hard.

I’ve realized that one of my trepidations about having Aaron in a special education class has been related to my own fear of the other children.  This ignorance comes from exactly the same place as so many families in Aaron’s schools over the years who have shunned him and our family.  (In our experience, the more educated and socio-economically well off the family, the deeper the shunning has been).  But I, too, have fell into this trap of stereotypical thinking.  Shame on me.

Today, after the meditation in the class, I opened my eyes and saw a group of diverse young people, all making their way in the world.  Some communicated with methods other than speaking, others used mobility devices to help them get around, and other kids had figured out ways to deal with our overstimulated sensory world through rocking or talking to themselves.  But of course they are all kids too, just like Aaron (who can be challenging to understand and who likes to hum and talk to himself in third person).

I am thankful for my workplace that has blessed me with the ability to reflect on my own values.  Last week, I met with a very wise mom, who shared with me – what if high school is really not about curriculum, but it is about Aaron feeling confident?  What if it isn’t a matter inclusion or segregation; it is a matter of connectedness?

The older I get, the more I realize I don’t know.  Bring on high school, in whatever form it is offered.  It has taken me a long time, but I am ready to put my own blustering ego aside to support my boy to finally find somewhere he truly belongs.

i’ve been fed a lie

Image 2
Since relocating to the west coast last year, I’ve thought a lot about what matters to me.  To move here, we chose to give up something (single-detached home ownership, high Alberta incomes) in order to get something back (living ten minutes away from the ocean, cherry trees, year-round hiking & cheap sushi).

Now we are considering wading back into the real estate market, but this time it won’t be for a big ole house on the prairies, it will for be a tiny townhouse on the top of a mountain (if we are lucky).  Everywhere I go in Vancouver, I see old homes being demolished and big mansions being erected in their place.

So I’ve been thinking:  does having a big house really matter?  Does having a big house make people happy?  And at what cost?

I can apply this thinking elsewhere.  I’m enamoured with various minimalist Twitter feeds, like 5 kids, 1 condo and Joshua Becker.   This less is more mentality isn’t just about stuff and space, it is about what ambitions we chase so we can acquire all this stuff and space.  Those high grades.  That university degree.  That demanding job.  The busy trap.  Then, when we are parents, we transfer it onto our kids: the over-scheduled children, the pressure we attach to our offspring to achieve more than we ever did.  My own daughter retired from soccer at the tender age of 15, when the demands of more training, more goals, more fitness equalled no fun and no life.  My eldest son chose the university-less road less travelled as a musician, to the horror of many of my other mom-friends.

And then along came our love child, the youngest of five, a child with a ‘dis’ability.  Many folks consider Aaron, who ironically has more chromosomes than you or me, as less of a person.  This has manifested in less playdates, less birthday party invitations, more questions about prenatal testing, and most recently, a school system who has given up teaching my son any academics at all.  As if I have to apologize for his place in this world. Which I don’t.  And I won’t.

Today Louise Kinross, writing in BLOOM, caused me to pause.  It is slowly dawning on me:  maybe I’ve gotten it wrong all along.  I think I was fed a lie about what is important in this life.  And I wasn’t force fed this lie; I willingly and thoughtlessly accepted it.  Is value in our lives attached to how much we do?  How much we own?  How big our house is?  What our child’s IQ is?

Maybe I’m overcompensating for my small rental home, my mini-salary and my kid with a disability.   One thing I know for sure:  I’d better not squander my energy here on this earth on the vapid and the meaningless.  For this very moment is all I’ve got.

It is after school here in Vancouver.  The rare sun hangs heavy in the sky.  The chickadees are at the bird feeders and Aaron is digging around in the kitchen, talking to himself, making a little snack of tzatziki and crackers.  As usual, Stampy is playing Minecraft on his iPad.  My daughter and I are happily texting back and forth news from our ordinary days.  I’m thinking about pouring myself a glass of wine and slowly assembling dinner (chorizo tacos tonight, yum).  All of this is my bounty.  And that’s gotta be more than enough.

 

precious cargo

I hotly anticipated the release of the new book by Craig Davidson called Precious Cargo. The sub-title is My year of driving the kids on school bus 3077, which sums up the premise of the book:  in desperation, struggling writer takes a job driving a special ed school bus in Calgary.  As a mom with a kid with special needs, I’m not super happy about the ‘in desperation’ part, but I do understand the writer’s need to set up dramatic tension as he begins his story.

I wanted Precious Cargo to provide a little crystal ball into my son’s life – being 13 and having Down syndrome, we’ve been told he’s eligible for the ‘special ed’ bus pick up and drop off next year – and that’s new for us.  I once heard a prominent researcher in the disability world give a talk on abuse and children with disabilities.  An audience member asked him, what’s the one piece of advice you’d give to parents to avoid abuse for their kids?  And he answered:  never ever put them on a school bus.  That scared the crap out of me.  Hence my extra-fascination with the premise of this book.

I also wanted to read Precious Cargo to gain some insight into the thoughts of a person who had never been exposed to kids with differences (e.g. the writer) – I wanted to see if he had any epiphanies about why the hell general ‘society’ shuns and excludes our children.

What I ended up getting from the book was this:  a hope that others who have never had experience with people with differences read this book.  Me reading this book is akin to preaching to the converted.  While it was interesting to ponder some points about inclusion (do kids want their own special ed bus?  Is inclusion about us and not them?) and to validate that the ‘wide berth’ given to people with disabilities is rooted in a very primal fear of difference:  it is 2016, yes, I know we haven’t evolved that much, particularly in regards to people with intellectual and/or visible differences.

For a richer analysis of Precious Cargo, listen to this wonderful CBC interview on The Current.  What stuck me about this interview was the immense respect that Anna Maria Tremonti offered to the panel participants and the subject matter of disability and stigma.  As always, Ian Brown knocked it out of the park with his thoughtful commentary (read his Globe and Mail review of Precious Cargo here).  I so appreciate the author Craig Davidson for introducing the stories of these young people on his bus to the broader world.  During the interview, I learned the most from Ing Wong-Ward, Associate Director, Centre for Independent Living in Toronto.  She spoke eloquently about us all being aware of always ‘calibrating our fears’ about people with differences.

Ing helped me realize that my world as the mother of a person with a disability is not the same as my son’s own world of living with a disability.  The older he gets, the more I’m working hard to unravel myself from him, to create environments where he can express his own feelings and make his own choices.  His story is his story.  My story is my story.  Craig Davidson’s story is his own story.  I believe there’s room in this world for all these stories.  

The more we talk about stigma and people with disabilities, the more we chip away at that stigma that has been built over the decades with the bricks of secrets and silence.  I truly hope that Precious Cargo becomes a best-seller, transcending the world of those who have a personal interest in ‘special needs’ like me.  I’ve often wondered whether having someone follow us around with a video camera as we go about our day-to-day life as a ‘special needs family’ would either terrify people or calm people down.  If nothing else, all these stories illuminate, and shine light on people and families who are just doing the best we can (just like you are) in this messed up, beautiful world.

living in defiance of the so-called ordinary

ferry

Two young ladies rang our doorbell at dinner time on Sunday night. We were expecting them – they were UBC Medical Anthropology students, interviewing us for a paper they were writing about the experience of living with a person with a disability.  My husband and I live with a person with a disability.  That would be Aaron, age 12 & pictured here, our youngest son who happens to have been born with Down syndrome.

I fear these students got way more content than they were looking for.  I’m sure they are still transcribing our 90 minute conversation, which was a mix of ranting, arm waving, preaching, storytelling, tears and love.  I hope they didn’t walk out thinking:  gosh, having a child with a disability really makes you fall off your rocker.  We are still on our rockers in this house, and in fact, we are standing on them, proud and tall – saner than we’ve ever been.

Before I had Aaron, I had NO IDEA.  I had NO IDEA about the pain of witnessing a child being excluded and struggling to find belonging.  I had NO IDEA what it felt like to be stared at, ignored or ridiculed because you look different than everybody else.  I had NO IDEA how most of society has not evolved, is stuck in caveman days, tribal and terrified of ‘the other’.  I had NO IDEA I should have purposely taught my older two kids about kindness and compassion, about standing up for the underdog, and about the importance of conducting oneself with absolute integrity.  (Thankfully, their little brother came along when they were 7 and 10 – and he taught them those values himself).

I was woefully ignorant before Aaron.  As an entitled, educated, well-off white person, I had NO IDEA what it felt like to be discriminated against.  But now I know, at least vicariously, because I love someone who experiences exclusion and loneliness every single day of his life simply because he was born different.

When Mike and I answered those young ladies’ questions, we shared stories about our struggles with systems, being denied respite & childcare, fighting against IQ testing, standing up for our son, digging deep to build him a community of friends, and how it feels to walk home with him from school and to have not one kid from his class slow down and say hi to him.

BUT.

This pain is deep, but it does not come from Aaron himself.  Aaron is but a human being.  He is flawed, yes, like the rest of us, but he also contains an infinite amount of joy and understanding about what’s important in life. (Hint:  it is the little things, folks).  I did not understand how precious life was before Aaron came along.  He taught us that we must celebrate every single moment, for this is all that we have.

We told those students about this intangible stuff too. You can’t see it, but it is real, and it is based in love. We told them that most people love their babies NO MATTER WHAT and what if they had a child and they had a phone call when he was 6 years old and found out that he was hit by a car and had a brain injury, would they STOP LOVING HIM?  Of course not.  In my ranting, I was reminded of this wonderful quote from Ian Brown:

Disability is inherently radical, lived in defiance of the so-called ordinary. – Ian Brown, Facing Difference, The Walrus, May 2014.

Aaron’s very life is radical, but by openly loving him, by bringing him into this world and daring to be happy, we are leading the revolution.  How much longer can people with disabilities be denied childcare, government funding for therapies, education, love, meaningful employment, and decent living conditions?  How is this OK with any other group of people?  (Answer:  this is not OK, at least not here in Canada – except for individuals with disabilities).

I hope that’s what those young students heard when they transcribed our many words from our interview for their paper.  I hope they realized that the important stuff (and people) in life are worth fighting for.  

Every day, Aaron shows us that life is not black & white.  Life, in fact, presents in glorious colour, and with that comes deep pain, but also profound love.  We are supposed to feel all of this, all of the joy and all of the pain, to prove that we are alive.  Aaron is who he is, and that’s simply enough.

the perks of being aaron

Lest I give the impression that it is all doom and gloom having a kid with a disability – here is our reality to provide some needed balance.  YES systems are BAD.  YES some people who say they will help you DO NOT HELP YOU and this is especially BAD.

But also YES some systems are good, like most things to do with recreation, which are easy to access, and FUN.  Aaron plays Challenger Baseball, which is the most awesomely organized recreation activity for kids with disabilities EVER. You show up with your kid, whatever age, whatever difference they have, and they get assigned a peer buddy to hang out with and they have FUN.  I do not have to get my pediatrician to fill out a form proving Aaron has Down syndrome or have a psychologist administer an IQ test for Aaron to play baseball.  (Sarcasm intended).

(Special Olympics is pretty good, although they demand a cervical spine x-ray for kids with Ds – an x-ray that isn’t even relevant anymore).  

I don’t see Challenger Baseball or Special Olympics as anything ‘special’ – I firmly believe that my kid should play sports as easily as any typically-developing kid can.  Challenger, in particular, makes it easy for this to happen – for my kid to be active, be part of a team, learn some skills and have fun.  There is another group in Vancouver called Soccer Dogs that has a similar philosophy.

This past month has been crammed with some extraordinary activities for Aaron because he has a disability.  I’m totally ok with that, considering all the cursing and struggle he has in the health and school systems – any perks?  Bring ’em on.

The school arranged a day at the Playland at the PNE, which was sponsored by the CKNW Children’s Orphans’ Fund. That was super because it was adapted – shorter line-ups, lots of volunteers to go rides with kids.  In Edmonton, Northlands has a similar event in July called Magic Monday.

There was some pizza and bowling action for the kids with special needs at school on Friday…and a Challenger Jamboree (more pizza) and we attended the Lower Mainland Down Syndrome Society picnic at beautiful Belcarra – there was a nature interpreter who took us families on a tour of the sea life, which was very informative for us prairie folks.

IMG_7225This is a photo of a super activity from Vancouver Fire and Rescue Services.  Aaron and I received an invite from a lovely recreation therapist that I work with at Sunny Hill Health Centre for Children.

We felt very fortunate to be included in this fabulous event – which included even more pizza, real rides in real fire trucks round and round the block with the sirens wailing, and holding the fire hose and aiming at pylons, a building and (most fun) one of the Fire Academy students.  My absolute favourite part of the night was seeing the fire fighters lifting kids up from their wheelchairs into the fire trucks for a ride.  Now that was pretty special. I even got to go for a ride in the fire truck and I COULD NOT STOP SMILING.

I’m not even counting all the kindnesses, lollipops, cookies and extra stuff that I know this kid gets because he’s Aaron.  It is very important for me to pause and be thankful for the people who go the extra mile for our kids.   Lucky?  Yes.  Fortunate?  Yes.  Blessed?  Yes, that too.

The fact is that Aaron has a very good life – he is beloved and he is loved.  And isn’t that what we all want from this earth?

i just want a hug

what kids need

what kids need

One of the many things I am going to miss from Edmonton is the Family Inclusion Group that was started by five moms at my son’s school.  Four of us have kids who have Educational Assistants, and one other mom has typically developing kids, but is interested in inclusion, and creating kind and caring school environments for all children.

That mom’s name is Amy Elliott, and she happens to be a Speech Language Pathologist.  Last night, our group co-hosted a presentation from Amy and Registered Psychologist Pamela Barrett called Beyond Temper Tantrums:  Uncovering Behaviour.  

Behaviour is a hot topic in our world.  This talk gave concrete strategies for both parents and teachers when working with children of all kinds.  Over 30 folks showed up, including our school trustee and administration.  (Our organizing group was very pleased.  We have been searching for a topic that wasn’t just a ‘special needs’ topic – one that would appeal to a greater audience).

Amy and Pam gave a professional, practical and passionate presentation.  I’ve been a mom for almost 22 years, and I’m still learning every single day about how to be a better parent. Here are some of my own take-aways.

  • There is always a reason behind behaviour for all children under 12.
  • It is our job as parents and teachers to be curious about what those underlying behaviours are.
  • Punishment is only a bandaid solution.  Unless we find the root cause of the behaviour, it is going to continue on.

They said that all children need to: feel a sense of belonging,  be loved, have a purpose and  feel important.  (At this point in the presentation, my eyes are welling up.  I was thinking YES!  And all that must NOT be conditional on a child exhibiting ‘good’ behaviour).

Some great points for educators:

  • You can’t teach the mind until you have the heart – Dr. Gordon Neufeld
  • Kids won’t respond to people they aren’t attached to
  • Encouragement is more effective than punishment

A memorable quote for me was:  A misbehaving child is a discouraged child.  I’d also add to that – a misbehaving child is also a misunderstood child.  My youngest son has flourished in environments where people have taken the time to listen to him, and uncover the reasons behind his behaviour.  I truly believe that all his behaviour is communication – and he is always trying to tell us something.  It is up to us to figure out what that is, and give him the tools so he can communicate it more effectively himself.  This can be done through social stories, visual cues, helping him identify emotions, and simple reminders to breathe.

Amy and Pam stressed that having empathy for the child and what they are going through is absolutely essential.  For like the porcupine in the picture above, the more kids push us away, the more we need to demonstrate our love and understanding.

Their message of love and belonging is a powerful one.  I hope it gets spread throughout the schools with Edmonton Public School Board.  As Amy and Pam said:

The need to belong, to be securely attached, to feel important and worthwhile and to be loved is hard wired into the human body.

When we see behaviour that does not contribute to the fulfilment of these needs in healthy ways, let’s be curious about what’s going on and wonder how we can help the individual get back on track.

Our kids are worth it, don’t you think?

Edited to add:  These fabulous resources were also shared: