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.

5 thoughts on “living in defiance of the so-called ordinary

  1. championsforwellness says:

    ❤ Sue. I love this post. Of course we love our children, we see their gifts and their challenges just as we do with all of our children. Our kids are not burdens or problems to be solved, they are human beings that offer us new, often better perspectives on life and humanity. They are kids who deserve a chance to discover, not be written off early by uninformed or ill intentioned people.

    This part: "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)."

    Sigh. So incredibly true. As we spar with our school district right now as they suggest it is perfectly okay to re-open the debate on inclusion, I couldn't agree with your words above more. We would not be okay with this if it were any other marginalized group, yet when it is about people who have disabilities it is about "free speech". Talk about a double standard. Just like so often happens to our kids where they get poked and prodded and punished for their disability and the kids who are developing on a more 'typical' path get a pat on the head for simply "being a kid".

    Thanks for writing this, Sue, it is just what I needed this morning.

  2. sue robins says:

    Thanks so much Karen for your thoughtful comment. As a friend recently told me, let’s keep fighting the good fight…but know you are NOT ALONE and we are all in this messed up beautiful life together…

  3. lisawensink says:

    I think as humans, we keep wanting to categorize people and label them because it is easier for us, but it devalues the ‘other’ and creates artificial differences and excludes.
    Sadly, there are other groups who are marginalized-people diagnosed with mental illness, many poor people (outside standing in line at the ministry office with no cover, is a lesson in how we treat poor people-it takes hours, and you could end up still needing to come back the next day), aboriginal people, refugees, among others.
    On a positive note, I do see way more inclusion and acceptance than I did 25 years ago, when I started work in these kinds of areas. And to be honest, my attitude and understanding has changed tremendously-I think to some things I might have said or done, that reflecting on, I cringe at!
    I think there is lots of hope that things will continue to improve, albeit much slower than we’d like. Advocacy takes a long time. And I get to go home at the end of the day-so much easier for me to philosophize.

  4. lisawensink says:

    Keep up advocating! Things do change, and pointing things out, having those conversations, make the difference!

    I remember in one of my first jobs working with people who have disabilities, a mom told me when she was 18, and had her baby that she had been told to put her baby in an institution and ‘forget about him’, At the time she told me this, her child was 15, and had been out of the institution for about 4 or 5 years. She had such guilt and shame about it, and I can’t even imagine how both of them felt going through that. Such a terrible story, but at least right now, I don’t think those types of conversations are happening with new moms. (I hope so, at least we don’t have institutions anymore)

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