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. 


the ethics of telling stories

brenebrownMy speaking engagements are on a variety of topics – the value of peer support, disclosing diagnosis, and partnering with patients and families.  In any presentation, I always tell elements of my story, my family’s story, and Aaron’s story.  This is a tricky thing.  When I’m sharing other people’s story, I am aware of the need to collect consent from the people I am representing.

Aaron and I will walk through a presentation beforehand, and he helps me pick out photos for my slides.  At my last presentation, at the Emergency Department conference, I shared a story about my 17 year old daughter, Ella, of her experience before she went into the OR.  I asked Ella if I could use her name and her story, and she shrugged and said ‘ok’.  She has a beautiful little story about the importance of human touch in health care – how her doctor held her hand as he talked to her in the OR, and how it helped her feel like everything was going to be OK.

I really hope one day Aaron will be behind the podium, telling his own story.  (If he wants.  Without coercion from his mother, of course).

I also regularly speak to health faculty students at the University of Alberta.  Yesterday, my friends at at the Health Sciences Council kindly invited me to attend a webinar hosted by the Centre for Digital Storytelling called the Role of Narrative in Public Health.

The webinar validated my belief that personal stories are powerful agents of social change, and that stories also help make sense of seemingly random events.  What I found most interesting was the discussion about ethics on storytelling, particularly with patient and family stories, which may contain sensitive health information.

The Center shared some great points:

1.  Take care to ensure the storyteller’s well-being.  Facilitators who help people to tell their stories must be trained to be supportive, and also need to be culturally aware.
2.  People must be able to tell their stories from a position of strength.
3. For organizations facilitating storytelling, watch out for power imbalances.
4.  Understand that consent is a process, not a one-time activity.
5. People should be able to make their own choices about how personal information is shared.
6.  Be clear about who owns the story product and how it is going to be shared.
7.  Consent should be able to be withdrawn at any time, without negative consequences.

I’d also add three points from my experience coaching families at the Stollery Children’s Hospital to tell their story:

  1. Ensure people know that they can keep whatever they want private.  When answering audience questions at a presentations, they can also opt not to answer any questions that make them uncomfortable.
  2. It is important to talk about emotion in stories, particularly when people are talking about loss.  I suggest rehearsing the story a lot if it is going to be presented orally – sometimes you can rehearse the emotion out of it.  But showing emotion is not a bad thing!  You just don’t want it to take you by surprise if you are standing up on the stage.
  3. Ask permission from your family and children if you are telling their stories.  They should know what pictures you are using, and what stories you are sharing.  Younger children or kids with disabilities should be involved in this process, too in the way that they can.

Stories need to be honoured and the storyteller must be treated with respect and dignity.   As anthropologist and sister Liz Lewis recently said on the Bloom blogI want to tell Katie’s story, to use my own family’s experiences and those of others like us, to effect change and make people listen.

Can we change the world by sharing our stories?  I think that we can, but we must always be mindful of supporting and caring for the storytellers (and that includes ourselves, too).