on one hand, the butterflies

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This quote from Maria Shriver is a reminder not to be afraid of being afraid. In fact, the most courageous people are afraid. If you are a patient and family speaker and you find yourself behind a podium, you will feel anxiety and that is ok. This means you are about to do something daring, something so great that so many other people are terrified of doing. You’ve overcome your fear to climb up onto the stage and that’s what really matters.

Brene Brown says, “if you fail, at least you will fail daring greatly.” In her book Daring Greatly, she deconstruct the great Teddy Roosevelt speech to point out that it is not the critic who counts, it is the (wo)man who has dared to enter the arena.

My son is a drummer in a punk rock band. He has played countless gigs in a mash-up of venues: basements, garages, clubs, halls and festivals. I once asked him: “aren’t you nervous before you go up on stage?” and he looked at me as if I had three heads.

“I’m not nervous, Mom,” he said slowly, so I could understand. “I’m excited to be playing.”

Ah. There are so many dichotomies with public speaking. This is true for all speakers, but especially true for patient and family speakers.  We have so much more skin in the game, because sharing personal stories from health care makes us so very vulnerable.

One on one hand, it is normal and even expected to be nervous. On the other hand, why label your feelings in a negative way? Instead of being anxious, why not reframe and rename these butterflies as excitement? I have no answer to this, as I continue to drive white-knuckled to speaking engagements while still accepting and even seeking out these same engagements.  On one hand, nerves give you energy, on the other hand, nerves make you nervous.

For patients and families sharing their stories, more dichotomies ensue:

On one hand, prepare thoroughly and on the other hand, don’t appear too scripted because you will come off as robotic.

On one hand, know your material well and don’t read your words, on the other hand, it is impossible to memorize 30 pages of speaking notes.

On one hand, showing emotion is good, but on the other hand, don’t burst into gasping, sobbing tears.

On one hand, connect with your audience using humour, but on the other hand, don’t stand up there and be a cheerleader.

One one hand, be self-deprecating to show humility, on the other hand, don’t be too apologetic.

On one hand, share negative stories, but on the other hand, do it constructively and don’t scold the audience.

On one hand, allow yourself to be vulnerable in the telling of your story, on the other hand, be respectful to all hecklers even if they are being total and complete jerks.

On one hand, your story is the most transformational element of many conferences, on the other hand, don’t you dare presume to ask for money for that speaking engagement.

On one hand, don’t be greedy and ask for too much money, on the other hand, don’t undervalue yourself.

On one hand, show passion, on the other hand, don’t come off as angry or hysterical, especially if you are a woman.

One one hand, tell the truth, on the other hand, don’t offend your audience.

On one hand, it is your message that’s most important, on the other hand, how and why you deliver that message is more important.

On one hand, the soft stuff is inspirational, on the other hand, where is the data?

On one hand, you can only speak on behalf of your own experience, on the other hand, try to speak on behalf of all patients.

On one hand, nobody cares how you look, on the other hand, don’t dress too casually (sign of not taking this seriously) or too formally (do you think you are better than those in the audience?).  Don’t wear jangly bracelets, stripes or big florals, or all black so you look like a floating head.

On one hand, don’t worry, your video will work, on the other hand, the technology guy isn’t answering his page.

On one hand, humans are not perfect, on the other hand, there will be a member of the audience counting all your ‘ums’.

On one hand, being a ‘mom’ is enough, on the other hand, play up any professional background you have to ensure credibility.

On one hand, not everybody will get your message, on the other hand, that guy asleep in the front row is disconcerting.

On one hand, is this worth all the stress and sweating, on the other hand, it is only through sharing our stories that we are going to change the world.

Bravo and brava to all those patients and families standing in front of a microphone to inspire positive change in health care (and also the education world).  I bow deeply and tip my hat to you – keep talking.  Keep grabbing that microphone.  Keep using your voice. Keep accepting those engagements.  Keep asking for a fee.  Keep asking if conferences are #patientsincluded. Keep feeling scared, but keep taking a deep breath and keep showing love for your audiences.  As Mary Pipher says, this is where the transformation begins.

what inclusion means to me

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I’ve been agonizing over preparing a presentation all week.  For creating a talk is like crafting a story – it is carefully pieced together to engage the audience early on, to create a safe space for listening, to allow them to feel.  This is trickier than you might think.  I say this from hard-fought experience of crashing and burning onstage – misreading your audience is the absolutely worst thing you can do when you are behind a podium.  I live in fear of it.  This is a hell of a way to make a living.

I was asked to speak to all the teachers at my son’s high school about What Inclusion Means to Me.  There would be about one hundred educators in the audience on their Pro-D day.  I sweated out my approach, talking to the teacher in the Access Program (Burnaby’s special ed) who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the provinces.  I was desperate to understand my audience, to not misstep, to represent other families well, for I had a lot of skin in the game.  This is the high school where Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to a teacher/parent audience on this same subject, almost three years ago in Alberta.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were travelling on a strong academic path.  One mom had angrily protested from the back of the room:  your kid is taking away from my kid’s teaching time!  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there really such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s great bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some wonderful quotes about our kids being brave, and presuming competence.  I remembered the young man, Ryan, who has autism and graduated with my daughter three years ago, and read that little essay.  Two local family leaders, Karen Copeland and Suzanne Perrault, helped me immensely with pep talks and information. I was very aware of not being self-serving – not only concerning myself with my own son’s experience, but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behaviour’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s Pro-D day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron – from when he was first diagnosed (the baby we expected was not the baby we got) to my struggles with my own fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974 (if you are going to have a stereotype, at least have an up-to-date stereotype).  I acknowledged the good work teachers do – how busy and exhausted they are too, and asked them to reflect on their why – why they chose teaching.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids from the Access Program in the school, no matter how simple:  learning the kids’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My goodness, as I write this out, I realized I covered a lot of ground.  I’d had better practice what I preach about presentations, and that is:  Identify your intention.  Pick three key messages.  Know thy audience.

My intention was to touch hearts to change minds.  My key messages were about the value of children with disabilities (the disabled do the work of love, says Ian Brown), expanding the definition of diversity to include different abilities, and to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in Burnaby based on the school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose teaching.  At the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one.   This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the exact same messages I share with health care audiences, as I’ve realized that these concepts are deeply universal.

In the end, for me, everything always circles back to Raymond Carver:

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Beloved on this earth.  That’s what I want for my children, for myself, and for you too.  xo.

the ‘others’

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Happily waiting in a farmer’s field in Virginia, circa November 2008.

In 2008, I travelled to Washington DC to campaign for a young long-shot presidential candidate named Barack Obama.  I joined my American friends to go door to door in Virginia to identified Democrat households.  We were tasked with reminding folks to vote and seeing if they needed a ride to the polling station on Election Day.  Some people said Canadians had no business being in the US for the campaign, and maybe that’s true.

But I was there because I believed in Obama. I believed in his great American story, I believed in his offer of change for America, which would – and did – have vicarious ripple effects in my own country.  I remember walking between the sprawling mansions and the tightly packed town homes in Virginia, marvelling at the two contrasts over a few short blocks. At one rickety house, we memorably danced with some older ladies on their front porch – they were giddy at the very prospect of a President Barack Obama. Later, we joined one hundred thousand people packed into a Virginia farmer’s field, patiently waiting for Obama’s last campaign speech. He arrived late and tired, sorrowful about his beloved grandma’s recent death. He did what he had to do and still fired up the crowd to get out to vote.  And vote they did.

The next night, I was privileged enough to attend an election party in DC.  Once CNN announced that Obama had won Virginia, the election was over.  Strangers whooped and hugged each other and burst onto the streets, unable to be contained inside.  In DC, the bluest of all of America, people were laughing and dancing, spilling onto the road with the honking cars, so hopeful for their futures. America was now everybody’s America, which is what this beautiful photo by White House photographer Pete Souza captures so well.  This little boy could be president one day.  That shining star entered his reality on Tuesday November 4, 2008.

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Eight years later, I have no clever commentary about last Tuesday’s election results. This time I had more skin in this race. Earlier this month, my eldest son received his American green card to solidify his life in the US with his new wife, who is Mexican American. I now feel only a chill of fear for their future.

Zoom to a few days later. Just for fun (and in the disability world, what we call respite for beleaguered parents) my husband and I bought tickets for a Funk and Soul Dance night.  The dance floor was tightly packed with a whole world of people:  suburban 50-ish white people (wait, that was us), old Italian nonnas, gaggles of young Asian girls, and yes, many black people too. The crowd was a cross section of the diversity that is our planet Earth – old/young, fat/thin, rich/poor.  At that point our differences didn’t matter.  We were all laughing and dancing together, the music helping us forget, all as one for a few hours deep into the rainy night.

Moving slowly the next day, I felt another wash of melancholy. From my throne of white liberal Canadian privilege, I recognized what I was mourning. The US election had unearthed a profound fear of ‘the other’ – which I now realize had been there all along – I was just sheltered and naive enough not to see it.  Millions of people voted (and not voted) to slide backwards towards a more homogenous, less tolerant nation.  Every day, I am reminded that my youngest son is an ‘other’ too, and I also fear for him in this (not) brave new world.

In Canada we must be vigilant to ensure more intolerance and hate does not bleed across our borders.  Do not think that it cannot happen here, for it already has:  in how we treat our Indigenous peoples, in the rising force of people like Kellie Leitch and her ‘Canadian values’ movement.  Do not be fooled.

I oscillate wildly between preaching love + kindness for one’s neighbour and vibrating with white hot outrage at the injustices that litter our world. Now is the time for us all to be wary my friends, and to stay alert – as others have been doing while I’ve stupidly had my head in the sand.

We are all one.  We all belong. Do not allow anyone to tell you any different.

remembering henry

poppiesLong ago, when I was twenty and still in university, I worked in a Veteran’s Home as a Nursing Attendant. I’d often work mornings helping the staff get the men up and ready for the day – and then run across campus to my English class, dressed in my nursing uniform and white nylons.

I’m remembering that experience today. Nursing Attendants are true bedside workers. We were the ones who worked directly with the gentlemen on the nursing unit – many of whom required extensive care. We cleaned up things that the housekeeping staff wouldn’t touch. But we also had the luxury of time to spend with the veterans, as we helped them get dressed, or patiently helped feed them meals.

Nobody talked about the War. At the time, there was even a World War I veteran at the Vet’s Home – but there were many veterans from World War II and Korea. While the war was in the distant past, it lived with these men every day.  These were just ordinary men who had found themselves in terrible circumstances. The scars from those war-time experiences often were manifested in estranged families, whispers of abusive behaviour and alcoholism. I remember helping men to bed after their return from the Legion, reeking of whiskey, and slurring their words.

But that wasn’t the whole story. The wars had affected a cross-section of the population of men, and there were many dignified, lovely residents at the Veteran’s Home. They enjoyed the company of the young nurses who where there to support them, and many of them reminded me of my own grandpa. It was important for the staff to remember that these ‘residents’ were also fathers, granddads, brothers and sons.

There were many stories of kindness at the Vet’s Home. My clearest memory was one winter, when I was working nights. On night shift, there was a lot of sitting around at the nursing desk, waiting to respond to call bells. Every few hours we would have rounds, where we would quietly walk through the unit, checking on the men, emptying urinals, and turning those who were immobile so they wouldn’t get bedsores.

One night, my patient assignment included an elderly man named Henry. He was in the last stages of life, and his breathing was increasingly noisy and laboured.  He had no family or friends to visit him in his final hours. After our first set of rounds, I excused myself from the desk to sit beside his bed.  Henry had yelled and sworn at me in the past, but all that didn’t matter now. His hand had paper-thin skin, and I held it softly through the wee hours of the night. It was a long shift. When I left at 7 am, I said a quiet good-bye and gave him a gentle kiss on his forehead.  I did not look back when I left the room.

I read Henry’s obituary in the paper a few days later.

I learned many things from working at that Vet’s Home. One was to duck fast if something was being thrown at you.   My other realization was that health care is really about acts of kindness.   And that no man should ever die alone.

Lest we forget.

(I wrote this in 2013, and republish it every November 11).

the longest goodbye

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Friday was my last day of work as Sunny Hill Children’s Health Centre’s Family Engagement Advisor.  I’ve been in the odd position of saying goodbye since the beginning of July when I first went on a leave of absence from my position.

I wouldn’t recommend giving four months’ notice for a job.  This has been like pulling a bandaid off veeeeerrrry slowly, as I didn’t want to leave.  I loved my job.  My quest for a flexible work environment has led me back to being home-based – within the confines of our condo, nobody cares what days of the week I work, just as long as I get the work done. So it is back to the freelancing life for me.

Resigning when you don’t want to is a weird thing.  I didn’t get fired nor did I resign because I was unhappy with my job and heading to another position.  Instead I left based on a tale of woe  – the end result was a sad Sue.

I hope I left well, as the leaving really is the hardest part.  All last week there were celebrations:  a managers’ breakfast, a roundtable where folks shared what they had learned working with me – interesting, a common theme was how the managers now approach family ‘complaints’ – reframing complaints as constructive feedback to improve the quality of care and service – that pleased me.

Later in the week, I was treated to lunch at my favourite restaurant and on my last day, I hosted cake and coffee in my office, was gifted a huge bouquet of autumn flowers, and very specially – received a beautiful painting from the nursing unit of children’s hands done by the young patients there.  I felt very loved.

A very diverse group of folks popped in and out of my office on Friday for a hug and piece of cake:  administrative support staff, booking clerks, therapists, managers and physicians.  My best hug was in the hall from one of the kindest, wittiest person I know – David, the gentleman who is the maintenance man at the hospital.  This variety of staff validated my approach at work, and in life.  Everybody matters.  Everybody influences the patient and family experience in a hospital.  Every single person working in a health setting should be considered a health professional – not just the clinicians – and deserves to be treated with the same respect and dignity that we ask for as patients and families.  That love needs to be spread everywhere, all the time, to change the culture in a hospital.

Thank you to my Sunny Hill friends for the beautiful send off.  Thank you to those in my online community who have expressed care and concern for me and our son over the past four months.  We will be fine.  Having me be home-based and more available for him has helped so far.  I’m resourceful – picking up writing, consulting and speaking gigs as I go along.  I’ll miss belonging to an organization, a steady paycheque (!) and the built in social connections that go along with that.  Being a freelancer offers lots of freedom, but it can offer up loneliness, too.  I learned so much about staff engagement at Sunny Hill, lessons that I will keep close to my heart as I move on.  As I like to say, patient and family engagement and storytelling is my life’s work, whether I do it inside a hospital or not.  I am proud of the family engagement work that’s been done at Sunny Hill over the last year and a half, and I know that the new Advisor will be in good hands.

Most importantly, it was an honour to have been invited to catch a glimpse into the complicated, beautiful lives of families who have children who are served by this pediatric rehab centre. May they continue to find the strength to use their voices and to share their stories to make the world of health care a better place, and may all the health professionals at Sunny Hill continue to create opportunities for the listening.

behind the boy in the moon

I wept during Ian Brown’s plenary talk on Tuesday at the CAPHC conference. Big wet tears leaked through my mascara. I stopped myself just short of audible sobbing.

Towards the end of Ian’s closing words, I peeked at the audience around me. To my surprise, they were crying too: researchers, academics, administrators, physicians – those of impressive titles, but all people too. I pulled my tissues out of my mom purse and passed them around my table.

I knew why I was weeping, but I wasn’t clear on the reason for their tears. I am the parent of a young man who has an intellectual disability. I, too, have a little dream of a community of love for Aaron, like Ian’s dream for his son Walker.  But clearly my professional colleagues had their hearts touched and their tears triggered for different reasons – perhaps they were thinking about one of their past patients, or an aunt or an uncle, or even about their own vulnerability. I’ll never know.

Ian’s talk, although centred on people with intellectual disabilities (finally, they had airtime on a stage) was also a talk about what makes us human. And that’s not success or competition (as many of my accomplished friends are engaged in), but instead he expressed what makes us human is simply love and belonging. People with intellectual disabilities understand that deeply. As Ian said, the disabled do the work of love.

I can’t adequately summarize his talk. It was a profound homage to people with intellectual disabilities – the likes of which I have never bore witness to before.

I heard Ian speak in 2009, also in Halifax, also at CAPHC, and knew him to be brutally honest and real – unafraid and apologetic – refreshingly with no reverence for the graduate degrees and fancy titles that filled the room. I knew Tuesday’s talk would be important, and delayed my flight home until the next morning to see him. I knew it would be an important talk and it was.

The whole pediatric health conference had been focused on fixing: deciding who was worthy of fixing and funding; research focused on helping families to fix their children; and a session mocking patients who were trying to fix themselves by turning to alternative medicine.

All this fixing talk made me unsettled by Tuesday afternoon, after crashing from my high from Sunday’s CFAN Symposium. In stark contrast, Ian told the health care audience to stop trying to fix his son, to “pay attention to the person he actually is”. He continued, “Let us put medical care behind human interaction. Let us build communities that are much less bureaucratic, much more inclusive…and that embrace and celebrate the beautiful grace of people like Walker.”

Ian Brown was a messenger for love and belonging – the two things that really matter in health care – the only way we are going to see our way through the big costly bloody mess that is our health care system. He was an eloquent poet, each phrase carefully chosen, spoken straight from his Dad heart, passionate and poignant. I furiously scratched snippets in my notebook. About his son: what value does Walker’s broken life have?

About building a community: for once the disabled would have a home with a great view…where all you have to do is keep company with one another.

In the end, Ian challenged us to join the intellectually disabled and be touched by the grace of who people actually are, not by who we think they should be.

Later that night, I FaceTimed Aaron: ‘Hi Mom!’ he said brightly, his round face and almond eyes lighting up the screen, ‘How was your day?’ I was struck by the gift that is my son, by the very fact that he was born, that he is with us, that he is human. There are so few people who understand him in this world. He shows us the path to love every single day, over and over again. If only we can adopt enough humility to push our own egos aside to clearly hear what he’s trying to say.

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