typical street in Sunset Park, Brooklyn

Both of my parents were born and raised in Brooklyn.  Both of my older brothers were born there as well, although the family moved to Missouri for the boys’ early years, and then to Ontario just before I was born.  I have never lived in New York City although I came close once, a lifetime ago.

I had a revelation about this American heritage this past Christmas. My oldest brother and his family (who live in California) were visiting, as were some local friends who had stopped by for dessert. In the course of conversation, I overheard him say, “Yes, I always knew I would go back to the States.”  I was mildly shocked to hear him say ‘back’.  That sounded odd to me as *I* grew up in Canada and never thought of the U.S. as home. Back?  I only saw his move to Boston (where he went to school) as leaving.

Looking back I see of course that my brothers had an entirely different childhood to mine.  They grew up together, 2 years apart in age, in Missouri, with their parents still together.  I grew up in Ontario, both brothers out of the house by the time I reached the age of 7, with a single mom and a weekend dad who had remarried and started another family by the time I was 5.  (My parents divorced while I was still an infant.) My brothers and I share very few childhood memories, particularly of place or location.

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For the past few years, I have made a bi-annual trip to New York with varying configurations of family in attendance. What was originally an informal gathering of my mother’s family has now officially been called the Lem Family Reunion.  And true to the Lem family’s ethos of thrift and autonomy, we first gather in a food court – Grand Central Station, South Street Seaport – to catch up.  Then, with news and updates out of the way, a day or two later we meet in Chinatown for a traditional Chinese meal.  Chicken heads and all.

This year, we had 18 people.  We came from Toronto, Austin, Los Angeles and Chicago, joining those who still live in Brooklyn and New Jersey.  To get a sense of future possibilities: there were 15 Lem children, with my mom being 2nd youngest.  6 Lem siblings are still living.  In total there are 26 Lem cousins, widely scattered across the U.S.  I have lost count of their children.

This year’s reunion was last weekend.  I went with Angus, my mom and my sister-in-law from California–and Carsten joined us for part of the time.  Click any photo to enlarge.

The majority of his expenses was covered by provincial and federal healthcare programs, charity funding and private insurance.  And I don’t just mean surgeries and hospital bills – I mean many things related to everyday living, like diapers and formula; homeschooling funding and caregivers to cover at least 30 hours a week; medication and implanted devices; therapy; orthotics, wheelchairs, standers and custom seating; and even our wheelchair-accessible mini-van.  I wonder how having this level of support has shaped my world view?

So as a bit of a diversion, I’m sharing with you my photo submissions to Flickr and Getty Images’ This is Canada photo contest.  The contest is already bursting with its share of landscape ‘beauty shots’, so I went with whimsy and Canadian moments instead.  If nothing else, it was fun to go through some photos…  For more pictures, visit my photo blog.

An article (with comments)  here:

TV Guide profile of ‘Taking Mercy’ on Global

It goes something like this: the deterioration of a mother’s children (from a genetic condition) is so painful for her to watch that she wants to ‘mercifully’ kill them. They are adults now and have been institutionalized for most of their lives.  (Note that she rarely visits them.) She thinks being put to death is what they would have wanted and that ‘this is no life’, to be fed by tubes and fully dependent – she even plays the old ‘God didn’t mean for this to be’ card by implying it’s not by grand design they are alive, but because of medical interventions. (Has this woman never encountered modern medicine…?)  Then, the film solicits soundbites from convicted murderer David (oops) Robert Latimer (who ‘mercifully’ killed his daughter 10 years ago) to offer his sympathies.

They call it a doc although it is anything but.  It is dishearteningly shlock-y and biased, and offers up no disability rights advocates to speak on behalf of those targeted with a death sentence.  But even more appalling, the show gives airtime and sympathy to people who would directly violate another person’s human rights – soft lighting and kind words from the host as they ruminate on how they wish they were allowed to kill (or did kill) their children.

We have LAWS that support each citizen’s individual rights to live – how is this even a discussion?!  And how is this ‘debate’ allowed to take place on public television?!

I have been reading that some people feel this is a private family issue and that it’s for parents to look within their own hearts and decide what is best.  Wha..?  Killing a Canadian citizen, who has his or her own inalienable rights and freedoms, is most certainly not a private issue.

In this context, it’s no different than condoning honour killings. The child has become a burden and a blight to the parent who can’t bear to abide the ‘suffering’ any longer. In both cases, the suffering is experienced by the parent – they just can’t take it anymore so they kill the offending child.

I watched the video and saw two grown children with severely disabled bodies, very much like Owen’s. I have been in this woman’s position of being the parent to such a person.  (“Walk a mile in my moccasins”, she says. )  And I have never entertained thoughts of killing my child to relieve his suffering, and I questioned daily whether he was actually suffering or not. Owen, in fact, lived a full and varied life.

Let’s say we allow ‘mercy killings’ – those two people would be killed and Owen would not.  Why?  Because of the perspective and capacity of the parent.  Hardly an equitable accounting. And most certainly not in keeping with our human rights contracts.

“But what about quality of life?” one might ask. Shouldn’t that be taken into account? In short, no.  Full stop.

“But what about the parent’s life? It must be so hard…” Yes, sure can be. Doesn’t justify murder; we don’t kill people because they are inconvenient or too much work.

If you’ve been a reader of this blog for a while you will know that based on my own experience, I believe that:

• most parental suffering is externally and systemically reinforced and can in fact be overcome with a deliberate change in perspective and resistance to the ‘status quo’, and
• the perceived suffering of someone else who can’t express it is just that – a perception.  Which not everyone will share and therefore cannot be universally defined.

My comment from another blog yesterday, below (lightly edited):

Not judging people is one thing, but absolutely we should debate and judge each others’ actions. These issues are not private family matters and in my mind, are not grey areas nor are they complex. These issues are about a society’s ethical and legal obligation to protect its vulnerable populations. It is not for a parent (or anyone) to decide whether or not a person lives or dies (or in this case, is killed) based on their disability, particularly when they are not capable of making this request or decision for themselves.

Millions of people endure “horrific and unmitigated suffering” on a daily basis probably FAR worse than the disabilities ‘suffered’ by Corriveau’s children (war, torture, poverty, enslavement, political oppression, extreme and chronic pain) and don’t choose to kill themselves – so is it an ultimate act of love to kill them all too?

Despite how easy it is to kill oneself, death does not seem to be the remedy of choice for most people in the world who are objectively (and can self-identify as) suffering.  In fact, human capacity for suffering is immense.

These issues are not complex or tricky or grey. Rather, I think they are simple: we should not kill vulnerable people because we can’t stand to see them suffer (even, I might add, even if they are actually suffering) or because we don’t know what to do with them.  We are ethically and legally bound to allow and protect their right to live.

I. Can. Not. Believe. that I feel compelled to publish this post.  I never thought of myself as a disability advocate but this issue just might turn me into one.

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Donna Thomson, author of The Four Walls of My Freedom, spoke at Holland Bloorview recently. When I watched this video for the first time, a brief mention of a brilliant thought nearly passed me by.  She reads a passage from her book about the Capability Approach, then says she likes it because it positions disability alongside gender, race, language, culture… just one of many possible identities.

Donna shares these thoughts at 1:24.

This is an important revelation for me – treating disability as an identity issue negates value judgements and worthiness arguments. It demands that we protect disabled people’s rights as diligently as we would protect our own–the same way we have come to protect rights for women, people of colour, immigrants, children…  Clearly, disability continues to be a stronghold of extreme prejudice.

I’ll borrow a description from Louise at Bloom, who referenced my talk in her recent blog post (about her son’s plastic surgery) and summed it up nicely.  She wrote:

I was reminded of it because last week I attended a Grand Rounds by Jennifer Johannesen, author of No Ordinary Boy, in which she spoke about how challenging it is for parents of children with disabilities to make good medical decisions. That statistics, the assurances of specialists — which in our case often came in the form of “If this was my child, I would pursue it” — can’t take the place of careful inner enquiry on the part of parents to understand ‘why’ they’re considering the intervention. Who is the surgery being done for? What might the child choose? If gains will just be incremental, does it justify the pain of the procedure and rehab? We’re often not prodded to look at the bigger picture in terms of how this surgery fits with everything else going on in our child’s and family’s life. And how may we feel if the outcome isn’t what we hoped?

I read two passages from the book in this video–if you wish to skip these, they occur at 08:45-11:25 and 17:33-end.

Grand Rounds Presentation, Holland Bloorview Kids Rehabilitation Hospital, April 11 2012

But, of course, it’s not nearly that simple. I enter this new phase having lived the one before it. The one where I sat on the fringes with my disabled son wondering when my life would ever change. I didn’t actually ‘wonder’ mind you – I knew when life would change: it would change when Owen died. Living with this knowledge and continuing to process it on a daily basis made me a bit of a philosopher. And perhaps gave me an upper hand in terms of having a Greater Understanding of Life. But I wonder now if it didn’t also make me feel a bit superior – which of course can be a defense against feeling excluded or misunderstood. I would shake my head and sigh, “They just don’t get it.” A sure way to seal my fate as an outsider.

I am moving forward in a new life that has freedoms and possibilities I barely knew existed–even sleeping through the night was just a dim memory when Owen was alive–but at the same time threatens to engulf me in everyday sameness. Occasionally it’s a relief to have dumb problems but sometimes it’s just kind of depressing.

Mind you, I don’t actively yearn for my old life with Owen because I know I can’t have it. The thought of living permanently in that ache is the most painful existence I could imagine. I know, because that ache sits there always and rises up when I least expect it. And I have come to appreciate just how much work it was, caring for Owen–I hope I don’t have to work that hard ever again.

So, I move through (against?) all of this by making Owen’s life matter. By writing, speaking, sharing, facilitating. Certainly his life mattered anyway, and mine as well, whether I do this or not. But I feel a responsibility to our experience–I have a platform, an ability for writing and speaking and I’m learning there are many who relate to our story and feel they are given a voice through this work. So how can I not?

I don’t feel burdened and it’s not emotionally difficult to talk about Owen. I love it, actually. And I get to do things I’m good at, share stories about a boy I love deeply, connect with good people and occasionally shift perspectives and change lives.

This is the part in some posts where I start to ruminate about fate and purpose. Not today! I’ll end with simply saying: I feel humbled and uplifted and grateful.

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Another unfinished, unpublished post from August 2010. Around Owen’s birthday, 2 months before he died:

I tend to make things up (like my Beliefs) as I go along, but one idea has consistently resonated with me over time. My experience with Owen has given me a small but mind-blowing view into a kind of alternate reality that persists in him, along with his body and personality.  Call it spirit, soul, god (capitalize as you wish or must).  A parallel consciousness on its own path and with its own destiny, distinct and often in direct conflict to his (and my?) will and ego. *This* is the element in Owen, in all humans, that I think suffers the most wear and tear in our society’s relentless pursuit of improvement and conformity and appropriateness.