outside of my bubble

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I am guilty of tightly curating the information that flows into my life.  I self-select the people I hang out with and the news that I read.  That’s why this looming Trump presidency is so shocking to me – because (admittedly in my white left-leaning world) I never considered there was even another point of view.  As President Obama counselled us in his farewell speech, “If you’re tired of arguing with strangers on the Internet, try talking with one of them in real life.”

This year I’ve vowed to venture outside my bubble with a commitment to learn more.  Just validating what I already know has become pretty boring.  In 2017, I’d like to be surprised with something new, to be pushed to think outside what I believe to be true.

Yesterday I drove east into the sunrise to Fort Langley to attend TEDxLangleyED.  The theme was the future of learning with a side of courage and curiosity.  As added incentive to get out of my warm bed early on a Saturday morning, I knew one of the speakers, Suzanne Perreault, and wanted to show up to show my support.

I won’t do eight hours of speakers justice by synthesizing it here.  (The organizers promise that the videos will be up on the TED site by March). But I will attempt to share one thing I learned from each speaker.  The problem with conference or events is that we walk out of them inspired and roaring to change, and then we get into our cars and drive back home and all that energy disappears.  Our take-aways get left in the lobby of the venue.  Writing down what I learned yesterday helps make it real and this makes it stick.

From the organizers, I learned about the importance of planning an agenda and crackerjack moderation.  Maria LeRose was seamless in her introductions – she stayed on stage for just the right amount of time and said exactly the right thing to sum up the previous talk and usher in the new one.  She was invisible but she was there – stitching together the speakers and moving things along.  I’ve moderated sessions in the past, and this was a good reminder that moderation is not about the moderator.

Again, a hat tip to the organizers with their planning of the day.  It was the right mix of different styles of talks:  music plus interviews plus talks with slides plus talks without slides plus archived TED videos.  Mixing up the format made the day whizz by and kept things surprising and energizing.

I scribbled notes from the speakers in the dark.  Here are some quotes I remember:

“Do you look at yourself and smile?” – Bruce Cairnie
“Failure will always tell you what you need to hear.” -Brent Hayden
“When did we as a society forget how to move through grief?” -Gabe Penner
“There’s no such thing as problem youth, just youth with problems.”-Sandy Balascak

I learned about interesting presentation styles, like Savanna Flakes, who compared designing meaningful school experiences for all students to the process of creating the Dorito.  She memorably said, referring to kids with exceptional needs:  “all learners have something to contribute to the school community.” Jefferson Hsu, age 10, gave a heartfelt violin performance.  Young and talented student Brett Dick shared a lovely song.

Kathleen Forsythe emphasized the importance of wonder and allowing the capacity to imagine.  John Harris set the stage for the demonstrations of three student virtual reality projects.  Then I felt about a hundred years old, like my dear Grandma when she used to leave a message on my answering machine, saying:  I hate this machine!  But it was good to recognize this in me too.

The three TED videos shown were outstanding, too:
The Surprising Habits of Original Thinkers – Adam Grant
You Have No Idea Where Camels Really Come From – Latif Nasser
What I Learned from 100 Days of Rejection – Jia Jiang

From these videos, I realized that I’m drawn to speakers who explain left-brain concepts (science, biology) in a right-brain way – with humour and storytelling.

I went for a walk at lunchtime to think about what I had heard.  I thought of Kathleen’s words about the wonder of the world – that every moment was a surprise, because you never know what could happen.  My walk was unsurprising, except I stopped to appreciate the warmth of the sun on the cold west coast day, thankful it wasn’t raining (and that one small wonder was enough).

My husband is obsessed with climate change and electric cars, and he would have loved Tim Stephenson’s talk – a science teacher who asks:  what is it that breaks your heart and what are you going to do about it is pretty special.  His call to action, to take a step was enough to make me feel conflicted driving my gas-guzzling car back home.

I had been looking forward to hearing Truepayna Moo speak and was not disappointed.  She spoke about coming to Canada as a Karen person from a refugee camp on the Burma/Thailand border and challenged the idea of the ‘glossed over’ Canadian notion of multiculturalism.  With grace and eloquence, this young woman reminded us to teach our children to ask questions of people who are different, so we can get to know each other on a deeper level.  She pointed out that being a refugee is a badge of honour, of strength and courage, not someone to feel pity for.

Are you still with me?  This is a wholly self-serving post to help me remember my day. I learned something from everybody. Katherine Mulski used humour to tackle the topic of busy (I don’t have time to slow down), Luke Dandurand brought me to tears with his video of his family and shame about what I don’t understand about reconciliation and our treatment of the First Nations people in Canada.  My friend Suzanne Perrault arrived on stage in her sparkly red shoes, full of passion for families who have children with autism, like hers.  She outlined the loss and grief families with children with differences go through, and asked the educators to consider how they organize the (dreaded) IEP meetings at school with families.  I was awed by her own courage to be up there, standing under the blazing lights on a red dotted carpet, and grateful she used the opportunity to give mama bears a voice.

I sat at the back by myself, on the aisle.  I had been fortunate enough to choose a spot behind an immensely talented woman named Victoria Olsen who was drawing a gorgeous sketch for the TEDTalks.  She was drawing on her iPad as people spoke, synthesizing their messages into a quote and illustration. It was fascinating to watch.  She’d pull out a message, draw a colourful quote and then change her mind and erase it and start over again.  She did so much erasing until she was satisfied with the image.  Then she’d have to leave the graphic to move onto the next speaker’s message.  My chance eavesdropping taught me this:  perfect is the enemy of done, and don’t be afraid to erase and start over again.  These are good lessons for life.

We must not assume that we know.  In fact, the wonder in this world is about the unknowing, the being open to surprise, the joy in the warm sun on my face, the listening to understand.  Events like TEDTalks remind me that I know nothing for sure.  This is both humbling and revolutionary at the very same time.

 

 

 

 

 

 

 

How to make it ok (part 2 of 2)

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@yogimemes

A shorter, less profanity-laced version of this essay is up on Huffington Post.

My husband/editor read my previous post and asked in his typically pragmatic way:  so what are you going to do about it?  This is a fair question.  I presented the problem of mothers with kids with disabilities being forced out of the paid workforce. Now what is the solution?

Well, it turns out there are lots of answers to this question, because families of kids with disabilities are incredibly resourceful.  We make lemonade out of lemons every single day.  Sometimes we rant but then we dig deep, put on our big girl pants and get shit done.

So family-friendly employers are rare and our governments don’t care about us.  Here’s what we do instead:

Connect

Whether you call it your herd or your people, it is so important to reach out to find like-minded families.  Before I had Aaron, I called these wonderful women my mom friends – in the disability world, the term is medicalized and called peer support.  No matter – the result is the same.  This means having other women you can talk to who get it.  When my now-adult kids were young, I met my best mom friends at playgroups, La Leche meetings and in the school hallways.

With my third kid, I’ve had to expand my definition of  connecting. Connecting happens through Facebook, Twitter or email in 2016, and that’s ok.  The days of meeting around the kitchen table are rare. I have to be more creative in the ways I get together in this era of busyness.

The mom network of information sharing, particularly in the complex world of disability, is very powerful.  A few months ago, I was in a meeting with health professionals. One of them asked me:  what clinician has taught you the most about resources and services?  I actually laughed when I responded and said:  it wasn’t clinicians who taught me; it was other moms.  It is always other moms.  Recently, on Christmas Eve, a mom emailed me asking a question about renting a pediatric wheelchair.  I didn’t know the answer, so I emailed three other moms and one clinician.  Within 4 hours on Christmas Eve, I heard back from all three moms with detailed responses.  The calibre of the women in my universe continues to impress me.

Alas, adult relationships also take time. I’ve learned to be patient with this process, especially since moving to a new city two years ago. Sometimes I’m lonely. Success to me doesn’t mean having a dozen girlfriends I go to Mexico with every year (although I’d be open to that, ha).  It means having different women at different times to lean on, to ask questions, to bounce ideas off of and to vent with.  One mom and I have an amusing relationship sharing GIFs on Twitter.  Another mom has kindly included me in her group of moms who have a subscription to a local theatre company.  A mom I met at work invited me to her yoga class.  These pieces of friendships make me feel less alone and these women are my great source of support and love.

Organize

I can attest that the only way change has ever happened is when regular folks organize together.  Governments and systems never change on their own – never ever ever.  They only respond to pressure from outside groups to do the right thing.  So much has changed in the disability world over the past 50 years.  People with Down syndrome are no longer automatically institutionalized at birth. Now our kids are included, for the most part, in their community schools. It wasn’t until the 1980’s that heart defects in babies with Down syndrome were even surgically fixed – before that, babies were left to die because of ‘quality of life’ bullshit.   Do you think this positive change happened because of bureaucrats?  No way my friends.  These advancements happened because families stood up, organized and told their stories.  They insisted that the status quo wasn’t okay anymore.  Change came from the people, not from bureaucrats, who, save for rare champion, are only invested in keeping things the same.

Celebrate unpaid work

A long time ago, I belonged to a Ottawa based group called Feminist Mothers At Home.  This group of moms was lobbying the government for recognition of the value of all unpaid caregiving work – including caring for children, elderly parents, or loved ones who were sick or had disabilities.  My involvement with them taught me an early lesson: in society’s eyes, you do have to be counted to count.  Other wiser moms taught me that women are often silenced and the value of speaking our truths.

I’ve never used the terms ‘volunteering’ or ‘stay at home mom.’  I prefer to say unpaid work.  This work is important – uncounted, undervalued, unrecognized – but caring for others is the glue that holds our whole world together.   If I meet someone new, I ask – do you work outside the home or at home?  Because work is work is work – whether you get paid or not.

Recalibrate

When I heard Ian Brown speak in October, he said his son Walker has taught him to constantly recalibrate.  It is true that our kids show us what’s important in life, but I’ve been guilty of ignoring that, or fighting it if it isn’t in alignment with what I thought was true.  A big part of paid work is identity.  I’ve had to constantly adjust my identity over the years and this has been hard.  Give yourself time to grieve for the loss of the so-called perfect life, in order to accept the life you have.  This might mean mourning career plans or graduate degrees.

In some ways, it is easier to wake up, get dressed up, arrive at my office, go to meetings, feel important.  When I have a job, the ‘who’ part of who I am is pre-packaged and handed to me for 7.5 hours a day.  When I’m set adrift on my own, I have to make this up myself, every single day.  Recalibration is about constant change, but recalibration must be done to find peace in your heart.

Open your own damn business

Four years ago, I was a lonely freelancer, picking up writing gigs here and there and working from my desk at home in between school drop off and pick up time.  I never got invited to anybody’s work Christmas party.  I knew that I wasn’t the only independent feeling that way, so my husband and I started a company called Bird Communications.  It began as a community, with photographers, designers, writers, editors, researchers – who all, for their own reasons, didn’t want to work for the ‘man’ in a staff position.  We met once a month for Bird Gatherings at a local coffee shop.  We got to know and care for each other.  We hosted our own damn Christmas party at our house, which was packed with Birds and their young families, all pining for a different model of work.  Slowly we transformed from a social, networking and learning community to a true health communications company.  We began to win paid work projects.  We never promise full-time work, and we place people the best we can, so this model doesn’t work for everybody.  But we help our Birds find contract work and make sure they get paid – an important factor for freelancers.

The lesson here is if you build it, they will come.  The composition of our (now) 26 Birds is interesting – we have many mothers just off maternity leave, or whose kids just began school – and they didn’t want to go back to full-time cubicle-land work.  So they joined us instead.  Of late, we have a number of smart creative moms who are communications or health professionals AND who have kids with disabilities.  They are an untapped, ignored, and simply awesome workforce.  We feel fortunate to have them amongst our midst.

Paid work

I’ve learned some hard lessons from the paid work world.  If I do venture back into that arena, I’ll choose my employer more carefully.  At my interview, I’ll ask some hard questions, like:  what happens if my child is hospitalized and I have to take time off work? How flexible are your hours, really?  I’d ask around about the work culture to see if it is an employer more interested in delivery of work than the optics of me sitting at my desk every day.

I’d better inform myself about benefits and paid leaves.  When my son was in the hospital last year, I was told that there was no paid leave for me to take time off work because I was in an out-of-scope position.  At the time, I was so whacked out with stress that I didn’t question this – I merely dutifully took a week off without pay.  Later, I found out there was a provision for such an absence.  It was my own fault for not contacting human resources and knowing my rights.

Part of having children is redefining what success looks like.  This is different for every woman.  For me, this means more leaning out, more acknowledging that 18 months in a position isn’t a failure, recognizing that I need to be fluid with both my identity and how I define myself.  Sometimes work is sometimes paid and sometimes it is not.   This also means suspending judgment and supporting other women in their choices.  The mommy wars is so distracting from the real issues at hand – you never know what your decision would be unless you walk in someone else’s shoes.  We are all doing the best we can.

Finally, 2016, I’m exhausted from keeping the system’s secrets.  I’ll cycle back to the cheeky quote at the beginning of this long essay. My 2017 resolution is based on a rather irreverent book I picked up over the holidays:  The Life-Changing Magic of Not Giving a F**k by Sarah Knight.  Be irreverent about things that don’t matter so you have time to be reverent about stuff that does.

Stand up.  Band together.  Use your voice.  You are bad-ass.  You are a sorcerer of divine light.  Don’t ever allow anybody to take that away from you.

his tell-tale heart

tell-taleAt lunch yesterday, Aaron was busy trying to us something he recently learned in English class. He said: the guy had a bird eye! A vulture! His heart was beating out of his chest! He was buried underground!

It took some Googling to figure out what he was talking about. He was referring to Edgar Allen Poe’s short story The Tell-Tale Heart.

This is what happens when you include a kid with a disability in a high school English class. Did he ‘get it’? Yes, he got it more than I did – me with my fancy English university degree, me who doesn’t know much Poe at all.

This isn’t the first time this has happened. A few weeks ago, Aaron arrived home from school with his journal.   In it, he had printed: We learned Romeo and Juliet today. It is a superb story by William Shakespeare. Later, his teacher told me he took a comprehension test about the play. He understood everything: who loved who, who hated who, who died. This is a kid who loves drama in real life. Of course he’d be drawn to it in literature too. He is his mother’s son.

Beth Foraker wrote a lovely piece on her blog about her son (age 14, who also happens to have Down syndrome) and his love of Macbeth.

There is a lot for both educators and parents to think about with these anecdotes. What preconceived notions do we possess about what kids with differences can and cannot learn? I thought about all the myths I carried about Down syndrome when Aaron was first diagnosed: that he would be mindlessly happy all the time (WRONG), that he wouldn’t understand sarcasm (WRONG), that he wouldn’t be a consumer (WHO TOLD ME THAT? SO WRONG). Did I think he would understand Edgar Allen Poe or Shakespeare? I hang my head in shame – no, this version of reality had not crossed my mind.

This holiday season I am thankful for Aaron for having proved me wrong, over and over again. I am grateful for educators like his English teacher. You never know what this kid might learn – we all just have to give him a chance. As Beth points out, this means giving our kids access to curriculum at school and access to rich experiences in life. She so eloquently says: Because we can never guess or know what will touch their hearts and speak to their soul.

this is not OK, part 1

Edited to add on December 22:  I’m thrilled that Huffington Post picked up on this little essay.  Here it is, on their site (I edited it – it is cleaned up – and a slightly different version than this one).

My last day of my paid work position was on November 4.  I continue to struggle mightily with having to resign from my job, which I dearly loved.

The official word is that I resigned because of my son.  The unofficial – and true – reason is much more complicated than that.  I resigned because:

  • My son is 13 and too old for before and after school daycare.  He can’t be left home alone, never mind find his way back and forth to school on his own like most 13 year old kids.  
  • There are a few rare childcare spots for youth with disabilities, but since we don’t have a Ministry of Child + Family Development file open for him – he’s not ‘disabled enough’ and simply doesn’t have the right diagnosis for our government’s social services ministry, we can’t access those spots anyhow.
  • The school day this year in special education in high school is shortened – requiring a smaller window where I’d be available in between drop off and pick up time.
  • Either my husband or I need to be visible and available at his new school – to build relationships with teachers, to attend meetings, to respond to phone calls to pick him up early.  He also has medical appointments and (private) therapies that someone needs to take him to.
  • My husband makes more money than I do – deciding who was going to quit work was a simple math equation.

These are all system problems, not Aaron problems. There is a distinct lack of support from our government for parents of children with disabilities to contribute to the paid workforce.  I’ll pause here to acknowledge the even more alarming issue of system and societal barriers constructed to block people who have disabilities to hold meaningful employment.  Many ministries willingly contribute to the problem:  Education, Human Services and Health.

In my attempt to resolve this in my workplace, I asked for a more flexible work environment to be more available for my son.  I wrote a proposal asking to be converted to contract, where I’d be onsite for meetings, continue to do outreach with families, but work outside of the constraints of a 3 day a week work schedule.  I was told ‘no’ – Human Resources would not allow this arrangement. Irony alert: my employer was a children’s hospital within a health authority.   This was an ego-shattering conversation- accommodations would not be made for me.  I have my hat in hand.

Workplaces that are not family-friendly nor flexible are not Aaron’s fault either.  This is an issue that affects mostly women, who statistically make less money than their male partners (if they have one) and are the ones in a relationship who typically have to drop out of paid work.  This is a feminist issue. (Note:  there are also many wonderful male caregivers out there – I’m not intending to exclude them.  But I’m speaking to my own situation).

I’ve been oscillating these past two months between deep sadness and simmering rage about my paid work situation.  I’ve been asking around my community of moms who have children with disabilities what they do about paid work.  Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful.  Other moms have teenagers and have been forced to opt out of paid work, or have flexible employers – although these types of employers are sadly the exception.  Yet others piece together a freelancing life, picking up work here and there on a project or contract, like I do now.

Many families slowly inch their way towards poverty.  We bleed money every month – ironically when we need it even more for our youngest child than we did with any other of our kids – to pay for therapy (which is all privately paid in this province, and expensive) and to save for his future (with a provincial government with one of the poorest rates of adult disability assistance in Canada).

“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee.  When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents got inevitably older – which was not the best combination. So the mom had to resign.

Other moms have left established careers to become Educational Assistants in the school system – low-paying, but at least the work hours paralleled their children’s school hours.  Others joined non-profit family support or disability organizations – which are typically more understanding of family need, but who also don’t pay well.  I’ve been picking up freelance editing and writing work and continue my (very part-time) speaking career.  Other moms have to opt of the paid workforce entirely to concentrate on homeschooling, unpaid advocacy and/or caregiving work instead.

This might all sound fine and dandy.  We make work literally work, somehow.  While I was working, I didn’t think about the single moms or the families teetering on the brink of poverty because the system made it impossible for one parent to work.  But I’m thinking about it now, a lot, having been soundly humbled and sitting here in my (relative) place of privilege.

As with many of the issues in the disability world that are not ok, the lack of support to allow women who have children with disabilities to work is also not ok.  This is an equity issue. Women with typically-developing children have fought for many years to have choice as far as paid work – to choose to stay at home or to choose to work.  That choice is automatically taken away from women who have children with extra needs.

One of my connected mom friends kindly did a lit search for me and forwarded articles on this very topic.  Titles ranged from:  Mostly the mother: Concentration of adverse employment effects on mothers of children with autism; “I feel as if I’m the one who is disabled” – The Emotional Impact of Changed Employment Trajectories of Mothers Caring for Children with Disabilities; and The Economic Costs of Childhood Disability.

In the next few weeks I’ll be sifting through these articles and writing more on the topic of paid work in our world.  In the meantime, I’ll end with Ellen K. Scott’s quote from her excellent paper, I Feel as If I’m the One Who is Disabled, from Gender & Society, Vol. 24 No. 5, October 2010 672-696:

“Similar to the findings in other studies, mothers mourned an identity transformed and the loss of an essential part of themselves (Shearn and Todd 2000). They blamed the lack of alternative care, the inflexibility of the employers, and their child’s (or in some cases children’s) extraordinary needs, which required extensive direct and advocacy care (Litt 2004).”

Our kids’ needs are only one part of this formula.  The way our governments and our workplaces support – and do not support – those of us who care for vulnerable children is both an interesting and disturbing question.  It is a feminist question, an equity question and an economic question.  I remain committed to the notion that change will only happen if we shine light on our issues by sharing our stories.  The invisible stories of caregivers need to be told.

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.

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.