reflections on reflective practice

story book

Look at this beautiful book of stories.  This was gifted to me by folks who work at a disability agency. They were a recent client of mine.

I was on an eight-month contract to do an assessment of the level of the family engagement at the organization. I had conversations with families, staff and partners about ideas to better support young families as they navigated the minefield of systems when their child is first diagnosed with a disability or delay.

This is all fancy-sounding talk for I went for coffee with lots of people and listened carefully to what they had to say. Everybody spoke in stories. Then I compiled their ideas and put them in a report along with recommendations for positive change. I was merely a vessel for their stories.

When I started in the family centred care field a dozen years ago in a children’s hospital, I only thought of stories in terms of the family and youth stories. I learned that professionals have a need to tell their stories too. For stories are what make us all human. In fact, stories are how we communicate about ourselves. We don’t refer to ourselves in terms of data or numbers. We use words (or photographs or visual art or dance or music or film…) to share pieces of ourselves with others.

I finally figured out that staff engagement and family engagement need to happen at the same time. You cannot have one without the other. That means that staff must have a safe place to tell their stories too. If they don’t, they sometimes hang onto their own stories in unhealthy ways and this can interfere with demonstrating empathy and providing compassionate care or service.  Telling your story can set you free.

In health care, sharing stories happens in what is called reflective practice. In my layperson terms, reflective practice is sharing a story about something that happened, figuring out what you learned from it and making a plan to do things different next time. Sadly, reflective practice is rarely a priority in overly busy and frantic workplaces. Being still and simply listening to each other is becoming a lost art. Let’s start a movement to bring it back.

Reflective practice can be adapted to any kind of work environment. Facilitating reflective practice sessions with those in caring professions is one of my favourite things to do.

I start easy with icebreakers, asking round table questions like: what’s the story behind your name? Once trust is established within a group, we work up to sharing stories about the stories behind why they chose their profession. These types of stories really get to the heart of why people do what they do. Colleagues find out full ‘origin’ stories that go beyond where their workmates went to university. Pieces of hearts are slowly shared.

This can lead into facilitated conversations about what are their challenges working with patients or clients or families. I don’t offer solutions. I listen carefully and sometimes reframe questions. Sometimes I’ll tell a bit of my own story as a mom of a disabled child or as a cancer patient to provide a different perspective. Often someone else in the group has a good idea to share with their colleagues. Many times people know the answer to their challenges in their own hearts. Sometimes people just need a bit of space to unlock it.

There are many other formal ways to nurture storytelling and reflective practice. Schwartz Rounds is an example of reflective practice in action.  Dr. Rita Charon’s Narrative Medicine movement uses the power of art for clinicians to share their stories. On Twitter, Dr. Colleen Farrell created #medhumchat, which is, “reflection, empathy, & connection in healthcare through discussions of poetry & prose.” You don’t have to be a physician to borrow some of these good ideas for your own workplace.

Everybody has a story. And everybody has to look after their own hearts so they can look after the hearts of others. This is where compassion is born.

Stories are complex creatures. Here are a few of my tips about storytelling in the professional realm:

  1. Keep it real. There is a fine balance between cheerleading and complaining. I try to share a positive story, then if I have a negative story, I always suggest what could have made it better. Constructive and authentic stories help lift morale and give a sense of hope.
  2. In groups, listen more than you talk. Check your own judgment and be as open-hearted as you can when listening to another’s story.Health care and human services are about serving others, so…
  3. Be careful of getting stuck in your own story. Sometimes your own story can overshadow or diminish the importance of the stories of the people you serve.
  4. A grief counsellor once told me: It is okay for people to have their story. And for you to have your story and for those two stories to be different.
  5. Be wary of comparing or minimizing stories. As someone once famously said: this isn’t the Olympics of suffering.
  6. Don’t steal other people’s stories for your own gain – especially people who have less power than you. (There are many authors who are guilty of this).
  7. Please don’t ignore other patient stories if you yourself become a patient. Share the stage and your microphone with others. Nobody’s story is more important than someone else’s, no matter their title or position.
  8. The only person you can represent with your story is your own fine self. Be mindful about speaking on behalf of others. (As a mother, I’ve been guilty of speaking on behalf of my children – especially my son who has an intellectual disability. I’ve been working hard to support him to share his own story instead).

It is always an honour for me to bear witness to someone’s story. I wish for more safe places where all kinds of people are guided to share their story.  In the telling comes the healing.  And we all need healing in our own ways.

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I See You

play.jpg

Aaron + his mama. (Shared with his consent).

Last night, Aaron and I got fancied up and went to out to a play. He wore his suit jacket and a black tie and I changed out of my regular mom jeans into a green velvet dress. This was a big occasion for us.

This is the Point was playing at the PuSH Festival at the Cultch Historic Theatre in Vancouver. This play initially caught my eye because the two lead characters, Tony Diamanti and Liz MacDougall, are actors with cerebral palsy. They share stories about their own lives along with Dan Watson (and Christina Serra, represented by video), the parents of their nine-year old son Bruno, who also has CP.

Aaron doesn’t have CP; he has Down syndrome. But I’m not sure the difference in diagnosis matters that much – he lives the common experience of being disabled. He enjoys his grade 10 drama class at school and is becoming more interested in live theatre. A play featuring actors with disabilities is an unusual thing. (It shouldn’t be. But it is). I think it is my job as his mom to show him what is possible.

This is the Point is a real-life montage of stories, shared through live performances and video vignettes. It includes audience participation – we were encouraged to read Tony Diamanti’s words out loud as he pointed to letters on a communication board. I loved this invitation to be a part of Tony’s world – a contrast to the common notion that disabled people must always fit into our abled-bodied spaces.

Before the play began, Dan wandered about the audience handing out Hershey kisses. He then announced, ‘We do things at our own pace,’ to set the tone for the show.

The play is a peek behind the curtain of having a disability and being parents to a child with a disability. It gave space to stories that are told but not often heard or acknowledged by the general public. The play explained communication devices, talked about consent (or lack of it) and touched on abuse.

I think that stories can teach you something new or validate what you already know by creating a mirror for your own experience.

Here’s the something new from This is the Point: disabled people don’t always communicate as we do, they have a sense of humour, curse, are sometimes horny, have sex, fall in love and drink vodka. The question for me is: why should this be new to me? How does being surprised by this reflect on my own misconceptions about adults with disabilities? As human beings, we are all the same. And we are all different too.

This is the Point offered a commentary on my own experience as a parent too. Dan recounts a heart-breaking scene from his local playground, where the neighbourhood kids keep asking about Bruno, over and over again: What is wrong with him?

“Why do I have to keep explaining why I love my son?” asks Dan, exasperated in response.

I’ve felt that pain too. Playgrounds are an especially cruel place, a petri-dish for children whose parents who have never to bothered to explain about disability or kids who are different. At another point, Dan exclaims, ‘Suck it doctors!’ in reaction to the doctors who told him everything his son wouldn’t do. I almost stood up on my chair and cheered.

After the final applause, I leaned over to Aaron and asked what he thought. I wondered how it felt to see disabled people in a play.

“Good!” he said enthusiastically (although he hid behind his suit jacket during the ‘sexy’ scenes). He was eyeing the actors, who were all still on stage chatting with audience members.

‘Do you want to meet them?’ I asked. ‘Yes,’ he said, ‘but come with me.’ ‘You go,’ I suggested, always eager to pull back from my hovering mother role.

He took a breath, marched up to Liz MacDougall and extended his hand. They looked at each other, smiled and shook hands.

‘Did you say anything?’ I asked when he returned. ‘No, I shook hands,’ he said. Somehow that handshake – the congratulations, the job well done, the nice to meet you, the thank you – was simply enough.  Aaron does things in his own way and that is how it should be.

Thinking about the play, I thought how rare it is for Aaron to see himself reflected in anything other than fundraising or awareness campaigns. We need more stories like This is the Point in our increasingly polarized world. Not as ‘special’ stories, but as stories as a matter of course, on regular rotation, in the media, performing arts, literature and film.  I promise that when I find them, I will amplify them.  And you can too.

You see, if you open your eyes and bear witness to stories that are different from your own, you never know what you might discover (mostly about yourself).  Bravo to the This is the Point cast and crew.  You made your point and you made it well.  xo.

lifted up from ireland

giphy

I’ve never met Marie Ennis-O’Connor, but I know she lives in Ireland and is a force for good on the Internet.  She runs the blog Journeying Beyond Breast Cancer and began a Social Spotlight series which highlighting unapologetic big mouths on the Internet like me.

Here’s my interview, where I had a chance to reflect on my thoughts on social media. I’m a Twitter and Instagram kinda gal and spoke about my forays on both platforms.  (I think Facebook’s harvesting of personal data is particularly evil, so I deleted my Facebook account years ago).  I was honest.  I confessed to scrolling through pictures of wedding dresses on Instagram and taking a break from Twitter because I was tired of the mansplaining.

What I admire about Marie is that she is generous and shares her space in cyber-space with other women.  She uses her platform to help others to rise up who have been patients or caregivers.  She makes room for our stories, to lift us, to give us space to share and practice using our voices.  Importantly, she doesn’t make it all about her.  She doesn’t hog the mike.

We must all follow Marie’s good example to make room for the voices different than our own.  Thank you, Marie for handing the microphone so I can speak.  I promise to hand it down the line to another woman.  And so it goes.  #peoplepower

sharing your story

sharing your story

The original of this infographic can be found here: Sharing Your Story.

As families of kids with disabilities, we get asked to share our family story and our child’s story over and over again in different settings with different professionals.  This infographic is meant to acknowledge the work that goes into sharing stories, gives communication tips to help get messages across and encourages storytellers to take care of themselves.

These tips can also be applied to other storytellers, like patients and caregivers.  Please share this widely as a tool for advocates as they build their own toolkits of resources.  It is helpful for clinicians, educators and other professionals to understand the complexities involved with asking people to tell their story too.  I’ve been fortunate to have given workshops and presentations to audiences of families about The Art of Storytelling too.  Stories are important.  It isn’t just what you say, it is how and why you share stories too.

And now a little story of my own.  This visual was designed by Karen Copeland, who has been a terrific colleague and friend.  Karen is a mom to two teenagers and is no stranger to navigating systems of care or telling her story. She is passionate about providing families with the information and tools they need to be successful. Karen loves creating visuals to strengthen our key messages, hoping to frame information in a way that is easy to understand and impactful. You can see more of Karen’s visuals at her Champions for Community Wellness website.

I first met Karen when I moved to the west coast almost four years ago.  I followed her on Twitter after reading her blog post called I am ‘that’ parent and connected with her immediately online because I’m that parent too.

Karen kindly agreed to meet me for coffee.  I knew very few people here in British Columbia and I wanted to connect up with other moms for all the ‘peer support’ reasons (to share information and resources, for emotional support) but mostly because I was lonely and lost and needed a friend.  Karen was my first mom friend here and I’ll never forget her generosity in taking the time to meet with me, a complete and total stranger who she had met on the Internet.

We met at a Starbucks and clicked immediately. We said we’d collaborate together one day and we have.  She’s designed other infographics with my content:  Sharing the News, Meaningful Family Engagement and Giving a Talk.  We also travelled to Halifax together for a CFAN conference and she and I partnered to deliver presentations from a family perspective to groups of medical students. Karen has been a personal guiding light to me as she’s navigated her own balance of being a fierce advocate and caring for herself.  She also was there for me as a listening friend when I was diagnosed with breast cancer last year.

Our story is a testimonial to many things:  how vital it is for families to be connected together, how ‘just’ moms are always more than just that – we all come with other professional skills.  In Karen’s case, she has wicked design and storytelling talent of her own.  Our story also speaks to the power of two moms bonding over lattes, which can be the engine for innovative collaborations.  In fact, I think meaningful change in the world comes from these ‘kitchen table’ conversations and not from organizations or governments.

I’m deeply grateful for Karen and the other women I’ve met since I’ve become a mother 25 long years ago.  We lift each other up.  We believe in each other. Family to family connections can spark magic – Karen and I are evidence of that.

 

cancer isn’t a competition

Screen Shot 2017-08-18 at 2.09.26 PMWhile I’m a newbie to the cancer world,  I have been the mom to a kid with a disability for 14 years.  This doesn’t make me any kind of expert – it only makes me wary and tired.

In the disability community, I have detected a weird undercurrent of competition.  Whose kid is *more* disabled and requires more care?  Whose kid has been in the PICU? Who has an invisible disability?  A visible one?  Governments also love to make funding decisions based on selectively-chosen diagnoses.  Bureaucrats decide who needs support or respite or childcare, not families or people with disabilities themselves.

All this competition for dollars, compassion and care has fractured the disability community into tiny silos.  When we are torn apart, we are weak.

The best people rise above this competition.  I love when I connect with a mom about what we have in common (how awesome our kids are as well as struggles with schools, health care, government funding and society), not purely what our kids’ different diagnoses are.  Aaron has much in common with kids with different syndromes/stuff going on with them than Down syndrome (and he smartly doesn’t label his friends based on their diagnoses).  The same is true with cancer – I’ve been blessed to meet many folks in the chronic disease world the past few months who have been kind and supportive to me.  They don’t have to have the exact same thing I do to offer empathy on topics like body image, pain or identity.  Together we are all stronger.

After becoming a cancer patient, imagine my surprise that while breast cancer campaigns have done a lot to raise awareness, fundraising campaigns do not benefit me as a patient in any way.  I received medical care at our cancer agency (at no direct cost to myself, thanks Tommy Douglas) and even pick up my prescription at the cancer pharmacy so it is covered by the hospital.

But any ‘extras’ I might have required for my mental, emotional or spiritual health come at a cost.  These are available in the private sector and for those who either have insurance or can afford it.  Such is our two-tiered Canadian health system.

There are other tiers in cancer as well.  Have lung cancer?  Expect constant questions if you smoked (and so what if you did?).  Have skin cancer?  Ditto the questions about tanning or sun exposure.  Have any kind of cancer at all?  Many snide remarks about your ‘unhealthy’ lifestyle will be slung your way.

I consider this dumping on people who are the most vulnerable – the ole ‘blame the patient’ phenomenon.  This happens in the disability world too, with the dreaded:  why didn’t you get prenatal testing question that is asked of families with children with Down syndrome.  Isn’t just having cancer (or a baby with a disability) enough for a little bit of kindness?  It feels like we are all competing for a finite amount of compassion in this messed up world.

Dig deeper and breast cancer has its own weird pecking order.  Mastectomy (single or double) or partial mastectomy.  Chemotherapy or no chemotherapy.  Radiation or no radiation.  Estrogen blockers or not.  I didn’t have chemo and have felt that I don’t fit into the traditional world of breast cancer.  One nurse said to me:  ‘well, radiation isn’t as bad as chemo.’  Which I’m sure is true, but because I didn’t have chemo, radiation was indeed the worst thing that happened to me.  It wasn’t a walk in the park at all.  In fact, the first day I had radiation was one of the worst days of my life.  But I’ve learned to bite my tongue because I know there are others who have been through much more taxing treatment.

This moves into prognosis too:  NED? (No evidence of disease, the ‘survivors’) or mets (metastatic breast cancer, woefully ignored and underfunded)?

The only way to temper this strange competition in the health care world comes from wisdom I heard once from a spiritual care leader at the children’s hospital where I used to work.

She said:  You have your story and other people have their stories.  It is okay for these stories to be different.  

Let’s embrace each other’s stories without tearing each other down.  Let’s recognize that we have more in common than not and stop allowing governments, society and systems to fracture us apart. As a wise therapist once told me:  you can’t lose if you don’t play the game.  Opt out of comparison.   If we make it safe for every patient and caregiver (and health professional, too) to tell their stories – even if their stories are different than ours – then all the things that separate us will magically disappear.

my why

Today I excitedly opened an email from a conference that I really really wanted to attend.  I had submitted an abstract called The Art of Storytelling:  how to craft stories to change the health care world.  I am pretty good at writing abstracts, had a solid creative presentation to pitch and have a decent acceptance rate for abstract submissions.  This was a conference I admired, in a city close to my eldest son, so I was crossing my fingers that I’d be accepted for a variety of reasons.  I clicked on the email in my inbox, holding my breath:

We regret to inform you that your submission was not chosen…

Well, damn.  I know Wayne Gretzky says, you miss 100% of the shots you don’t take. As a writer, I get rejected a lot (which tends to be radio silence in this digital age, not mailed rejection letters), but damn.  It always stings.

I’ve been floating around as of late.  I resigned from my paid staff position last month.  I’ve had two kids grow up. My youngest son hit puberty last year and is in a push for independence, which of course results in the slow rejection of the mother.  I miss hanging out with my daughter and doing girl things. I pine for my mom friends in Edmonton. Everybody here seems so busy – I’ve discovered that the laid-back west coast mentality is only an urban myth. I cannot even occupy myself with shopping for stuff and cleaning my big house – we’ve downsized by half and I have no more big house, no yard and no room (or desire) for more stuff.  This week we are in the midst of an odd blizzard and have been stranded up on our mountain.  I have time now to think, which is a terrifying concept in a world where we get caught up in the Busy Trap just so we don’t have a moment to ourselves.  The whole world is zooming around me so fast and here I am, just quietly sitting on a bench watching it go by.

Before I left my position, I had two wise colleagues separately recommend Simon Sinek’s TEDTalk to me.  It is called How Great Leaders Inspire Action, and while by title I’m no great leader, I do have a little sphere of influence, with my family, my company and myself.  I’d suggest it is worth 17 minutes and 57 seconds of your time.

If you don’t have the time to spare to watch it, consider this diagram:

why

(saved from:  varchannelmarketing.com)

If you are feeling a bit lost and lonely like me, or if you have the nagging feeling that what you do in life is not in alignment with your values, this approach can give you direction.  Sinek’s point (in business, and I’m extracting his message to apply to life) is that the why matters.  Why do you do what you do?  And that’s not what your position title is, or your quest to make money to buy more and more stuff – I challenge you to dig deeper than that.  Why are you on this Earth?  If we can all can answer our why, then the how and the what will soon become clear.

So I’ve had the time to think about this a lot (and won’t be wasting time preparing to present to that conference that rejected me, ha) and feel confident in stating:

“I share stories – and create opportunities for others to share their stories – to rekindle compassion in the world.”  That’s my why. All my meaningful work has been born from that why. Now I just have to trust that my why is the light I need to shine my own way.