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.

 

my sour grapes

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This quote sums up what I observe as I see the whole Patient Engagement thing drift further and further away from the people at the grassroots.  Patient Engagement (and before that Patient Centred Care) used to be a movement of the people.  It is no longer a movement and is now wholly owned by organizations that use patient and family representatives who act, look and talk like them to pretend they are listening to all the people.  Patient engagement has become over-professionalized, less-diverse and now represents only an handful of elite chosen voices. Patient engagement does not look like the people who are sitting in the waiting rooms in clinics and hospitals.

If you are one of those voices and you are not actively creating space for people who are different from you, then you are part of the problem.

I know this because I used to be one of the chosen people.  I was a family representative in pediatric health care in Canada.  I chaired national committees, spoke at conferences and overall felt like a pretty important person.  Then I got cancer.  This was my reckoning.

In my recovery after cancer treatment and my struggles to get back up from my knees, I realized that nobody in oncology was interested in any of my wisdom about how to make things better for patients.  I was just another middle-aged breast cancer patient (and breast cancer patients are a dime a dozen in the cancer world).  This was extremely humbling.  This humbling leads me to Seth Godin’s quote.

If you are one of the chosen ones to represent patients and families, please realize that the only person you can represent is yourself.  If you are a family member, you cannot and should not represent your loved one.  You can of course speak and you should speak, but you own your own story and nobody else’s.

Always, always consider:  how can I bring other voices along with me?  How can I use my power to create opportunities to share at the podium or around the boardroom table?  How do I inform myself by actively seeking out and listening to people who are different than me?

Lately I’ve turned down speaking engagements and committee appointments because I don’t think we need another white, educated, economically-privileged voice like mine amplified to health care audiences (who are mostly just like me.  It is the ultimate in confirmation bias).  It is similar to the Manel concept – unless we start saying ‘no’ and making room for other voices, we will be the only ones taking up space.

Here are some things you can do: ask to co-present with someone else or suggest a panel format that offers different people’s opinions.  Say ‘no’ if you are the only patient or family representative, or you are getting asked to work for free.  (If this happens because you can afford it, there is NEVER EVER going to be diversity).  Use your chosen voice and power to demand change.  The time has come to share power with those who don’t act, look or talk just like you and me.

intelligent lives

The year after our baby boy was diagnosed with Down syndrome, colleagues at my husband’s workplace – a department at the Ministry of Health – were gathering donations in my son’s name for our local Down syndrome awareness walk.  Peggy, one of my husband’s co-workers, was asked if she’d like to donate.  She responded:

Why should I contribute to someone who contributes nothing to society?

Fifteen years later, that comment still stings me like a slap across my face.  As a new mom, I was naive as to how the world values – and does not value – people who have disabilities, including little babies like mine.  Peggy was my rude wake-up call.  (There is a tiny bit of irony that someone like Peggy worked for the Ministry of Health).

Peggy’s response begs these questions:  What determines a person’s worth?  Is it how much they contribute to the economy? Is it how smart they are? Is it their IQ score?

Last night, the documentary Intelligent Lives was screened by UBC’s Centre for Inclusion and Citizenship.  Dan Habib is a well known filmmaker and disability-rights advocate.  His youngest son Samuel  has cerebral palsy and was featured in his first documentary Including Samuel.  I watched this film almost ten years ago, when Aaron was five years old and it struck me then how much the inclusion of Samuel in the elementary setting benefited the other children in the class, not just Samuel.   Habib has a TEDx Talk on this same subject.  Research backs theory this up – for references, see my post What Inclusion Means to Us.

There are many people like Peggy in the world who feel that disabled people like my son are a burden.  Intelligent Lives challenges this ableist view in two ways – first by following the stories of three young adults with intellectual disabilities as they travel through their lives searching for belonging.  Micah, Naieer and Naomie’s stories are human stories, as they figure out their own identities along the way.  Woven in with their tales is actor Chris Cooper’s steady narration explaining the dark history of using IQ testing to determine potential.  As he says, low IQ was a one-way admission ticket to an institution.

IQ testing and scores have been used in the past to set immigration policy, determine a soldier’s rank, institutionalize people with disabilities and to support eugenics, including those policies in Nazi Germany.  What is particularly chilling is that IQ testing and scores are still being used today, in 2018, by our governments to determine need and ability.

I’ve been railing against IQ testing for people with intellectual disabilities for a long time.  In the Province of British Columbia, a child with Down syndrome cannot access respite funding or therapies or programs run by disability support agencies unless the families prove their child has an intellectual disability.  This is done through psycho-educational testing, which includes an IQ test.  Wait lists for this publicly-funded testing run from months to years or you can pay $3,000 out of your own pocket to have the test done by a private psychologist.

I have to prove to the government that my son with Down syndrome has an intellectual disability.  If he tests too high – over 70 – he will be turned down for services, even if he ends up with a score of 71.

Habib’s film strongly attests that IQ tests meaningless – and even worse – that IQ testing is racist and ableist.  The tests are not adapted or modified when they are administered to children with intellectual disabilities, which means my son takes a test where he is set up only to fail.  To me, IQ testing treads on my son’s dignity as a human being and is a stupid way to prove he needs therapies and that our family needs support.

IQ scores serve only to put people in boxes.  Intelligent Lives points out that people have multiple intelligences that we need to broaden our understanding of what intelligence actually is.

The deeper question for me is why do we have to prove that people with intellectual disabilities have value and worth in the first place?

If I could travel back in time, I’d march right over to Peggy’s cubicle and tell her this: Having an advanced education or a fancy job or even a high IQ does not make you a better person than my son.

My son has value because he is a human being and that’s simply enough.

 

 

 

giving a talk

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Click here for original, full-size version:  Giving a Talk.

I have attended many health conferences in my time.  Lately I’ve been observing how effectively (or not) speakers communicate with their audiences.  The best speakers are humble, human and passionate.  Alas, many folks resort to blandly reading their speaking notes off bullets on slides.  The sad result of this approach is that people leave the talk with no take-aways, no knowledge to transfer to their workplace, no inspiration and no bold actions.  What happens in the conference room stays in the conference room.  That’s a waste for everybody, including the presenters.

I found a reference that said up to 70% of conference learning is lost 24 hours after a conference.  70%!  This is my own call to action to end this conference waste.

What if speakers adopted some easy strategies to be more engaging and communicate more effectively in their talks?  While my experience includes coaching families and patients to share their stories at the podium, I would humbly suggest that all conference speakers, including clinicians and researchers, could benefit from a few simple hints.  I partnered with Karen Copeland from Champions of Community Mental Wellness to create this Giving a Talk infographic with tips to remember when preparing and delivering a talk.

Really, giving a talk should be about communicating with your audience, not just dumping information.  An engaging, creative talk, even about a technical or clinical subject, is knowledge translation at its finest.  This is not about dumbing things down.  It is about understanding your audience and how people learn. As the great Di Vinci said:  Simplicity is the greatest sophistication.

ps:  For more information about effectively sharing your story,  here are two links to information about a Family Talks and a patient mentoring program.

 

Beyond Bubble Baths

I was honoured to have my story chosen to be shared on the This is Brave website.  This beautiful site was created to foster community and share stories of women’s mental health.

I’ve written snippets of my travels in mental health since my cancer diagnosis.  This story is a reflection on all I’ve learned the past 18 months about taking care of myself – more than that – about unpacking why I actually didn’t like myself very much.  Self-loathing is a horrible thing.  As Arthur Frank says, it is me writing as the Wounded Storyteller but now more from my scars than my wounds.

I tackled the old notion of self-care in this essay and called it Beyond Bubble Baths.  I also hope to put an arrow in the heart of the whole narrative of having to be brave and strong when you have cancer (or a kid with a disability or become a mother or your marriage breaks up or when you are grieving or during any other significant life event).  There is great pressure in our society to ‘present well’ ‘be strong’ ‘get back to normal’ because of people’s own discomfort with sitting with someone in their pain.

This is Brave is a popular Instagram site and it features the stories of younger moms.  I’m 50, hardly a young mother, so I wrote about what I wished I had known about loving myself as a younger woman and how that would have changed the way I mothered my three children.  I would have allowed the hard emotions, both in myself and my kids.  This was hard to admit and then write.  As I said, my children have had a strong mother, but not a happy mother.  For that I feel deep regret.

Part of the This is Brave experience is that the writers are gifted a photo shoot.  Although the idea of getting my picture taken made me break out in a fear sweat, I gamely drove out to the studio.  Julie from Julie Christine Photography was lovely and immediately put me at ease.  It is weird to see photos of me as usually I’m the one taking photos of my family (or of food).  I know that having photos of myself mean that I’ve stepped out from beyond my various roles (of mother, wife, children’s health advocate) to become more visible on the road to fully embrace myself.

Here is one of my favourite pictures. I am wearing pink because I hate the whole breast cancer awareness crap (also known this month as Pinktober) and I’m taking pink back. It is a sad picture because it is okay to be sad.  If you feel sad that means you have a chance to feel joy too. xo.

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speaking my truth to your power

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I believe caregiving is a women’s issue.  Breast cancer is a women’s issue too.  (Please accept this caveat – I know there are men who are caregivers and men who have breast cancer.  But this post is about women because I am a woman).

Thinking of Dr. Christine Ford reminded me of all the times I’ve been harassed, abused, ignored, oppressed and minimized throughout my entire life, all 50 years of it.  If you are a woman, I know that you are thinking of your darkness too. Yesterday, I wept in my car considering this:  I am Dr. Ford.  We are all Dr. Ford.

My invisibility began when I was a little girl and moved through nursing school, my first marriage and my workplace. I learned to be a good girl, to be nice, to behave and to not make any waves. When I became a mother, I became even less detectable. And when I was the mother of a child with a disability?  Even though my son has a visible disability, both he and I disappeared off the radar almost entirely.  I transformed into an invisible mom.  When I was diagnosed with breast cancer, I became one of the legions of women whose health concerns were ignored and dismissed.  I was just another middle-aged breast cancer patient; a mere shrug from the staff at the cancer hospital.

While I will never ever say that cancer is a gift, one thing that has happened this past year – with hard inner work and the help of a good therapist – I now have razor sharp clarity.  Cancer slaps you in the face with your own mortality.  I know for sure that my time on this Earth is limited.  I thought I had more time.  I’d better step up and focus on what’s important.

Here is my plea:  Do not stop speaking up.  If you are feeling hopeless, read Emma Gonzalez’s wisdom here.  Speak your truth to the power.  The power includes people who work in health care – a setting where there are huge unrecognized and unchecked power imbalances. Health care is not made up only of men.  There are women in power there too, lots of them.  As a mom and a patient, I’ve at times been labelled difficult, crazy and hysterical.  Cancer has allowed me at least this:  I don’t care what you think of me anymore.

Speak your truth. Don’t let the bastards get you down.  I’m with you.  Don’t stop, now more than ever.  Keep going.  Rise up.  The revolution begins at midnight.

training for all

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I recently asked this question at a webinar about patient-oriented research. It was in response to a comment that patients need training to work with researchers. But musing that collaborations are mutual, I was wondering why it was only the patients who need training. Wouldn’t the mutuality lend itself to training (delivered by the patients) for the researchers too?

My question about training researchers was met with nervous laughter. I don’t know if it was because the question made people uncomfortable or if the audience (of mostly researchers) was laughing at my question. Could I, the mom of a kid with a disability and a former cancer patient with a lowly undergrad degree in English, dare to think I could train someone with a PhD?

I hear about ‘training patients’ a lot. Another version of this is ‘coaching parents.’ This is about stuffing patients and families of all shapes and sizes into a rigid deficit-based model.  This model is almost always system and provider-centred.

I’d respectfully suggest that we all need training to understand each other. Patients need information about statistics and analyzing data. Researchers need information to understand a patient’s experience in the health care system. Researchers communicate through data and patients communicate through stories. Researchers need to understand stories and patients need to understand data. Our humanity is where we meet in the middle.