what inclusion means to me


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:


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

make the space for the listening


I’ve learned so much these past ten years in my work in patient and family centred care.  My lessons come from this funny learning loop: my naivety is shattered, I feel deeply humbled and then I recognize how much I don’t know.  Working in the world of pediatrics, the clinicians tell me how family centred they are, but then many families sadly shake their heads and tell me otherwise.  This is disheartening.

I’ve come to believe that the care is generally child-centred, but health professionals aren’t sure what the hell to do with these crabby, stressed, fearful families who come along with their sick children.  Us families are self-professed pains in the asses, as that is our primal job – to protect our children at all costs.

There’s so much talk and very little walk about truly involving patients and families, except by a few lonely champions.  This needs to change.  I believe that the core of all work in health care is compassion.  And compassion comes when you take the time to understand another person’s perspective.  And people share their perspectives, not through data (which is so loved by clinicians) but through stories.  Real people communicate by telling stories.

Nobody has time for stories at the bedside.  Bureaucrats create policies to limit access to programs. Wait lists never end. Once you are finally in the health system, people rush in and out of patient rooms at great speed. Technology takes over for the human touch. Efficiency is held up as king. The bottom line for administrators is costs, not care.  With the explosion of knowledge, health care is fractured into more and more specialty areas and people are categorized by a pecking order of diagnoses instead of by vulnerability or individualized need.

The antidote to all this mess is to make the time to slow down, sit on the edge of the bed, put your hand on the patient’s hand, look them in the eye, ask what matters to you and then sit back and listen.  Simply listen to understand, openly and without judgment.  As a wise physician friend told me, find out what keeps people up at night.  What is their hidden concern?  It is then, and only then, will the care in health care begin.

Listening can happen at both the bedside and at the organizational level, too. But nobody has time for patient stories in rounds or during meetings or at conferences either.  The deep irony is that it is the patients and families who know how to make health care better – you just have to give us a chance.  But you must make the space for the listening.

Yesterday I was given a great gift.  It was the gift of time with thirty pediatric residents.  One of my champions is a beloved pediatrician.  Her heart is fully with the children and families she cares for and serves.  There was a window in the schedule for these residents and she grabbed it – creating a rare half day teaching opportunity for families.  I was honoured that family leader and mama bear extraordinaire Isabel Jordan collaborated with me at the podium.  We talked about partnering with families and best practice in sharing the news/disclosing diagnosis.  The residents – who I’m sure were exhausted from the pace of their training – listened raptly to us moms standing at the front of the lecture room.  They were good sports to participate in our ice-breaker, they asked respectful questions throughout and then at the end, they graciously thanked us for our candor, our passion and our time.  Afterwards, amongst themselves, they talked about ways they could improve the hospital experience for families – by caring for their own hearts, revisiting how family centred family centred rounds actually are, and making more time in their frantic schedules to talk about disclosing diagnosis well.

I cannot how thankful I was for this time with these young clinicians.  I cannot express how impressed I was by the calibre of this new generation of physicians.  In the sanctity of that lecture hall, we were all just people, no longer ‘doctor’ and ‘mom’ – the residents, eager to make the world a better place than when they found it, recognizing our desperate need for improvement, and us moms shining the light to show them the way.

Health care and academic leaders, let your guard down and allow yourselves to be vulnerable enough to let patients and families into your hearts. Vow to never have another patient centred care conference (irony alert!) – or any conference – without patients fully involved.  Invite families to share stories at staff orientation.  Add us to the curriculum to teach health faculty students. We want to help you.  We are ready – just give us a chance.  It all comes down to this:  simply make the space for the listening.  (Bonus points if you actually make positive change based on what you hear). This listening space is the spot where the great transformation of health care will begin.

my story, your story

sylvia plath

About eight years ago, on a news segment about peer support for families who have kids with disabilities, I talked about the grief that families feel when their child receives a diagnosis.  A journalist who had cerebral palsy took me to task, saying that I was against people with disabilities (!), and that by expressing the sorrow that comes with a diagnosis in the early days, I disrespected my son.  I felt great shame for feeling the way I felt, and for also expressing it in a public way.

I have conflicting feelings about this.  As a wise spiritual care leader at my work said – you have your story others have their own stories.  It is ok if these stories are not the same.  So I have my story about being Aaron’s mom, and yes, Aaron has his own story about being Aaron.   As he gets older, I hope to support him to tell his own story. (If he wants.  I also live in fear of becoming a stage mom).  When Aaron appears in my presentations, or even on my Facebook page, he is aware I am talking about him.  He helps me pick out his photos.  If he doesn’t want a particular picture used, I don’t.  Is he truly giving informed consent?  I guess that’s a controversial question for a kid with Down syndrome.  I trust that I explain what I am doing in a way that he understands, and that I give him a true opportunity to say ‘no’.

Since the fall of the website The Mighty, (see this Washington Post article for an explanation) I’ve been even more reluctant to write about Aaron.  There have been various edicts floating around the Internet that say that parents should not be writing about their kids with disabilities.  I’ll tread carefully here, as with any ethical issues, the answer isn’t black and white.

If you are a writer who writes about your experience having a child with a disability, I’m not going to tell you what you are allowed and not allowed to do.  This type of reflection is personal, and we all figure out this whole parenting thing in our own time.  Passing grand judgments on what everybody must do seems in itself judgmental to me.

Being aware, participating in regular reflection, and being open to listening to my kids is what I promise to do.  My eldest son asked that I not publish about him anymore, so I don’t.  I check with my other two kids before I share pictures or stories.  I try to express my own story (including feelings and reactions) as a mother without compromising my kids’ privacy or dignity.  Such is the delicate balance of figuring out what is my story and what is theirs. I don’t believe that shaming or muzzling people is the answer – surely there are more respectful ways to give people pause to think?  We all have our own answers about what’s the right thing to do, and our answers reside in our own hearts. You figure out your right answer, and I’ll figure out mine.

amazing grace

On the eve of the American election in 2008, I went down to DC and met up with my American friend, Melissa Steele, to volunteer for Obama in the fading days of his campaign.  I was very fortunate to be at the Washington Post party the night Obama won.  I will never forget the scene after the CNN commentators announced that Obama took Virginia, and was in effect the President of the United States of America.  There was a surge of people to get urgently out of the building, and we all spilled out into the streets.  There, people were laughing and dancing and crying.  We walked past a grocery store, where the employees were jumping up and down and knocking on the windows, eager to join the fray of the celebration.

I’ve watched Obama over the years struggle as President with the bureaucracy, politics and infighting in the government.  But although I don’t agree in all his decisions, I still believe in him and his message of change.  I also believe that he is one of the greatest storytellers ever.  He has this amazing talent to connect authentically with his audience through his words and actions.  I continue to be awed by his rare skill.

Yesterday, I watched the video of Obama delivering the eulogy at the funeral of Rev. Clementa C. Pinckney in Charleston, South Carolina.  Towards the end, he stops and hesitates.  Then he slowly starts singing Amazing Grace. This simple act brought me to tears.  I thought of of the people who died in the church, and the state of America regarding guns and race and hate, and it filled me with great sorrow.

Obama’s gentle gesture was to step outside his carefully prepared speaking notes to connect with his audience, and to reach out to them in the universal language of music.  It was beautiful and spontaneous.  I dearly hope that after he’s done his presidency he will have the freedom to return to inspiring and motivating people, through hope and belief, in changing this messed up beautiful world.

universities & storytelling

Today I spoke at a new kind of conference for me: an academic one – the Engagement Scholarship Consortium Conference. (You can tell this is an academic one by the amount of syllables in the conference name).

I was invited to reflect on a panel why I speak as a patient to health faculty students every year. This was a huge conference at our convention centre, about a topic I didn’t even know existed: how universities engage their communities. The presenters were from all over the world, and I attended a session about storytelling (one of my favourite topics).

Ileans Haunami Ruelas and Saneo Marfil from the University of Hawai’i presented about how their university creates storytelling spaces to share cultural information about Hawai’i with families in their community. I was impressed by their family-centred approach – they offer sessions in the evenings and weekends, provide child care so parents can attend and offer meals, snacks and transportation for participants. This proved to me once again that the little things mean a lot in engagement.

Next up, Judith Bachay from St. Thomas University in Florida spoke about their university’s attempt to connect counselling students with teenagers and young adults who have addiction challenges. The students learned true empathy skills, and the recent graduate speaker said that she started to see teens as teens first, not just as drug users. I love that people-first philosophy, and I believe all us human beings want to be seen as people first (not labels).

The speakers at this conference did not just validate what I already knew. J. Michael Lyons from Saint Joseph’s University in Philadelphia gave a rousing presentation about using digital media to tell the stories of people incarcerated in the US prison system. He showed a poignant video created by his students that told the story of a man who was incarcerated when he was 16 – the United States, shockingly, has “juvenile lifers” – children who are sent to jail for life for being convicted of murder or accessory to murder.

His Communications Studies students go into a federal penitentiary to talk to the ‘lifers.’ They are only allowed to bring in a pen and paper, so they collect the stories and then create a video, with powerful images and a narrator, that tell the mens’ stories in first person. I was struck by how the speaker so respectfully referred to the men who were incarcerated by name. He also said, “part of incarceration is to keep your story quiet,” and emphasized, “what a waste of humanity to keep people locked up so long.”  He and his students work hard at getting these important stories out into the world.

The words from the gentleman who was incarcerated 30 years ago say it best:

“Do not be a follower. Dare to be different,” and,
“I want to be remembered as someone who made a bad choice. I am a good person who made a bad choice.”

This is powerful stuff.

While I typically speak at health professional conferences, it was enlightening to attend this consortium to think about new perspectives. It pleases me that universities are considering the importance of storytelling in their communities. As I said on the panel today, I still believe that sharing our stories is how we are going to change the world.

why i tell my story

I am fortunate to have opportunities to share our family’s story about our experience with our youngest son in the health system.  I do a fair amount of public speaking as a ‘mom’ to health professional and student audiences.

And while I am despondent at the slow pace of change in the world of patient and family centred care in the Canadian health system, I was recently reminded why I do what I do by a health faculty student at the University of Alberta’s Interprofessional Practice Launch.  I have been speaking to students there for the past three years.

A facilitator shared with me something she overheard in the hallway.  A student said, “hearing that mom speak is going to change everything about the way I see my education.”


If even one person out of hundreds has a slight shift in their attitude, if they see patients as people first, if they vow to celebrate the births of all babies (even the sick babies — especially the sick babies), if they take the time to understand a patient’s story and practice compassionate care… well, then I’ve done my job.  But that one comment from that one student has tempered all the preparation, anxiety and sweating that goes into these presentations.

This awesome quote shared by Teresa Chinn sums it up best:


Let’s keep sharing our stories with the world, folks.  I think that’s the only way we are going to change the world.

n of one

Being Canadian, I often apologize in my presentations to health professionals.  I apologize specifically for not having any data.  I have no numbers.  None. Zilch.  Zero.  I have only stories in my arsenal of speaking notes.

I talk purely in words, complemented by best practice in patient centred care.  Best practice is, of course, based on research, and I shove it in there so I’m not heckled by the left brains in the crowd.

I do speak to other patients and families to collect their stories for an audience.  I share a beautiful story from a mom whose son was in PICU, and another about a lovely experience in the Emergency Department.   But basically, I am an n of 1, not a statistically significant sample.

The United States of Metrics is a recent New York Times essay written by Bruce Feiler.  He talks about the rise of numbers.  This is a fascinating piece, with this interesting point:

Every generation gets the gurus it craves. Ours include Malcolm Gladwell, Daniel Kahneman, Brené Brown, Jim Collins, Steven Levitt and Stephen Dubner, Dan Gilbert, Dan Pink, Dan Ariely and Nate Silver. What do they all have in common? They use research to tackle issues that were once the provenance of poets, theologians and philosophers. (Also, there’s a 40 percent chance they’re named Dan.)

Now I love love love Brené Brown, but I love her for her personal stories, not for her background as a researcher.  But she understands that the world values numbers over words, and her PhD gives her credibility to share stories with her audiences.

As a mom in the health system, I also tell stories about being vulnerable and fragile, but my credibility comes from being “just” a mom. Often conference organizers want my academic credentials for the program, and I laughingly give them:  Sue Robins, Mom, BA (English).

The United States of Metrics points out that while data has given us order, it also can rob us of creativity and joy.  I had a serious stint where I counted every calorie of everything I consumed.  Believe me, there’s no quicker way to kill the pleasure that is eating than to collect and document the energy value of food.

When my husband I go for a walk, he turns on the GPS Lady, who squawks at us every kilometre, telling us how fast we have walked.  I’d rather concentrate on the scenery and chirping birds than counting my every step.  (My husband, an accomplished IT guy, begs to differ.  He loves the data, the metadata and any infographics that might go along with the data).  For me, GPS Lady kills the joy of a simple walk, and turns it into an information gathering experience, an unnecessary research project.

Has change happened in this world because of data?  Maybe it has.  But I have a feeling that change has really happened one story at a time.  Disclaimer:  This is just a gut feeling, though, an instinct.  I have no data to back that claim up.