Plenty of media attention, radio and television air time and space on social networking sites has been devoted to a hate-filled letter to a mother whose son has autism in Newcastle, Ontario. You’ve seen it, I’m sure. But…if you’ve been living under a large heavy rock wearing earplugs for the last few days, here is a link to the story.
At first, I didn’t want to write about this. In fact, I didn’t talk about it much or post about it on Facebook. But when my lovely editor at Bunch asked me if I wanted to write some kind of response, I saw an opportunity. I’m not here to rant, or knee-jerk, to scream, vilify or to blame, but simply to talk. To talk about what kinds of things this letter asks me to remember.
First, this letter asks me to remember sadness and compassion. For the woman who wrote it, for the family who received it and for the world in general. I’m loath to post the letter – or the words therein – on my social network profiles – in a world where everything goes viral. Somehow providing more attention to the words – and reacting with anger and rage towards the woman who wrote it – seems to feel not as good as it should. It should feel justified to react to a letter like that with anger and, as some have, a wish for karma to do its thing for the writer. Yet reflecting anger back with anger does not feel right. This may be, in part, due to my own career and experiences: first, training as a nurse and working in an acute-care hospital, doing graduate work in ethics and now working as a professor, teaching others how to be good nurses. Something we teach and learn is that you’ll inevitably encounter angry, highly disagreeable people all the time – who are, at that moment, your patients – who you may not like at all, whose values are not aligned with yours and whose views or words you may find repugnant.
But everyone has a story. And somewhere in that story is a hint about why they ended up the way they did. As a nurse, I provided care to patients who expressed views or practices that I would not tolerate in other contexts: racist, homophobic, misogynistic views that were inherently misaligned with my own values. I cared for patients who struck me, who told me to fuck off, who sexualized me, who insulted me. I nursed others who I didn’t know well, whose values I never explored, and for all I know may have been murderers, abusers, or bullies. But I cared for them, talked to them, ensured that they were pain-free and comfortable as I would for any patient. I demonstrated compassion in the face of adversity and I challenge my students to do the same: to act with care and humanity to someone who you might think, really deep down, doesn’t deserve it. In no way does that condone their views or suggest implicit agreement – it demonstrates a kind of compassion that we need to keep in the world. It is what a nurse must do, day after day. And that practice has, in some way, spilled into the rest of my life.
The letter asks me to remember that there are many battles to be fought. My job, as Georgia’s mom, is to figure out which ones I need to fight. While I acknowledge that the content of this letter is extreme and terrible in terms of the reaction to a child with autism, I experience the range of reactions to the “difference” that is Georgia in the world every day: fear, discomfort, disgust, impatience, agitation. I’m okay with her differences. But trust me, a great many are not. Many more than you would think, hope or predict. I’m sensitized to it and never miss it. You’ve seen a view of her in this column that is cute at times, compelling and loveable. Yet this is not what everyone sees. Yesterday the cashier at our local Metro backed up from her cash register as Georgia approached, too close for comfort. Half-frightened and half-disgusted, she glared at Georgia who was drooling just a little bit with messy hair and a grubby face and t-shirt. On a regular basis, I experience the ultra hip, trendy downtown moms in Trinity Bellwoods – they must be cool with everything, right? – who are highly uncomfortable with my kid who is happily barking at the swing, or just standing and watching the other kids play. The mothers stare. They let their children stare. They shoo their children away from her. They catch my eye and embarrassed, they smile awkwardly. Occasionally, I have been known to inform them out loud that autism, as far as we know, is not yet contagious.
The world is a cruel and intolerant place. There are people who write horrible letters to mothers of children with autism. There are others who vilify those who love people of the same sex. Some believe that those who practice a different religion or love a different god do not deserve to live. Others are sure that the lives of men are worth more than the lives of women and that female children should not be educated, valued or even fed. Some people abuse their elderly parents. Children are enslaved, victimized, mutilated, assaulted and killed. There are still those who believe that the colour of your skin makes you either a far better or a less worthy person. There are people who will beat a dog, drown a kitten or kill a random innocent young man because “they were bored”. From the random utterings of “hey retard!” or “hey fatso!” to the gunning down of those who have differing values, we live in a world in which hate, abuse, bullying, misogyny, marginalization, bigotry and discrimination happen.
I’m not saying that I simply accept these things. Not at all. Rather, I have to pick my own fights. If I got angry every time someone was uncomfortable with my child being around or wished desperately that Georgia was something else or somewhere else, I’d have no energy left for anything else. The fight would be monumental, constant and would flavour my entire child-rearing experience.
I do get angry. All the time. I recently stood cutting vegetables at the kitchen counter, sobbing with anger. I was listening to a CBC radio documentary on Betty Anne Gagnon, a woman with a developmental disability who was horribly abused by her family caregivers. The story talked about how her caregivers would punish her by making her drink Clorox, how they failed to provide Betty Anne with a life, with adequate food, or with love and compassion. How the system failed her, ignored her, forgot about her. This makes me angry. It makes me angry that there aren’t enough high quality, accessible services and safeguards for kids and youth with autism and the often-lost or neglected adults they will become. It makes me angry that our government can spend thousands of dollars on senator audits but fail to provide social services for the many individuals and families who just fall through the cracks. It angers me that so many people are raging about this terrible letter but so few understand just how badly our system consistently fails children, youth and adults with autism, and their families who struggle and deal with hardship without respite on a level that is, for some, unsustainable. This letter reminds me about just how much there is to be angry about.
The last thing this letter does is ask me to remember the compassion that I see in all the good things and the good people I experience all the time. The woman in the dentist’s office who didn’t mind that Georgia bumped her arm at least once a minute in the waiting room and was cheering for the Raptors (yes, in the dental office) too loud and too often. The police officer who invited us into the horse trailer to pet the horses, out of the blue. The firefighter on the street who lifts Georgia into the truck for a look around. The shopkeeper on Queen West who takes great pleasure in offering Georgia a chair and a chat. My 86-year-old neighbour who tells Georgia that she is loved and presses a well-used Ziploc bag of too-old hard candy into her hand. The father with a baby, in a restaurant, who makes sure that he not only tells Georgia what the baby’s name is, but chats with her about the baby. Fellow vacationers who know Georgia loves a good splash in the pool and go out of their way to execute a quick cannonball jump in the deep end as they walk by, purely for her amusement. Our good friends who let Georgia run about their farm, walk their dogs and drive the tractor. Our babysitter who would lift up a car to free this kid. My family who embraces this wonderful girl and find great pleasure in her difference. All the surprisingly compelling and touching gestures from people who do not understand Georgia perfectly, but are willing to come a little closer. That is what that letter asks me to remember.