The Down Syndrome Rocks Talk, part 1

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This week, my son Aaron and I were invited to give a talk about Down syndrome to a class at his high school. We’ve co-presented once before, three years ago when Aaron was 13.

At that talk, Aaron read a one-page speech to a group of medical students. It was interesting to watch the students’ reactions to him. At first, when he stood up at the front of the room, they looked mortified. I asked them how many of them had disabled people in their lives. Only one of the medical students, out of 20, raised their hands. The concept of a disabled person giving a speech to them – in fact educating them – seemed new to most of them.

Once Aaron started reading his talk, I could see the look of surprise on their faces. Yes, some people with Down syndrome can read – not everybody can read and that’s okay – but some people can.  Note: you don’t need to read to give a talk, just the same as you don’t have to verbally talk to communicate.  But Aaron reads, so he read from his notes.

By the end of the session, a few of the students approached Aaron on the way out to give him a high five, or to comment on his hockey t-shirt. They made real effort to connect with him and for me it was heartening. It was a positive session. I hope they remember Aaron when they embark on their medical careers, and even the memory of him confidently standing in front of the room reading will dispel a stereotype or two that they might have had about people with intellectual disabilities.

Last week, when the teacher asked if I could come speak to the class and maybe bring Aaron, I flipped the request upside down. I asked Aaron if he wanted to speak to the class and if he maybe wanted to bring me.  I explained what the talk would probably be like and who would be in the audience.

‘Sure!’ he said. We were on.

I’ve been considering lately how I do too much for Aaron, instead of with Aaron. Or even better, how I should be giving Aaron the space to take the lead himself. As his mother, I think I have taken away a lot of his agency by making decisions for him. It is high time for me to give him control in his life back.  He would agree.  He often tells me:  “Mom I want my freedom.”

So I’ve included my lessons that I learned in the process of working with him to prepare his slides and speaking notes for the talk.

Lesson 1: It was his decision to speak.

Lesson 2: It was his talk, not mine.

It is always a good idea to ask organizers what they wanted for key messages for the audience. So I asked the teacher what she thought the students would like to know. She said: to dispel some of the myths about potential and abilities about Down syndrome, and to inform about some of the potential physical challenges. 

Aaron and I sat down to plan for this talk. ‘Do you want to use slides?’ Yes he said. We opened up PowerPoint and I handed over my computer. He picked his own template. ‘Do you want to type or should I?’ You do it Mom, he said.

Lesson 3: He chose his own template.

Lesson 4: I told him the key messages, but I did not tell him what to put on the slides. I only was the transcriber.

Lesson 5: He chose all his own images.

In the end he had six slides. I guided him with the topics that matched the organizer’s key messages. (This is what I would do if I was doing coaching for any speaker, something I do in my consulting business). He had an introduction slide, then talked about genetics, how he was different and how he rocked. The second last slide is the one that’s pictured above.

“What do you want the students to know about Down syndrome?” I asked. Respect, that’s the key he kept saying so it got its own slide.

For his final slide he wanted a picture of a black hole. He looked around Google images and he chose a picture of a black hole that was embedded inside Earth.

Then he dictated his speaking notes that matched up with his slides. I prompted him only by asking: What do you want to say when this slide is on the screen?

Lesson 6: The words on the speaking notes were his. I merely typed out what he said onto his speaking notes. I repeated his words back to him. Sometimes I suggested fixing some grammar, but otherwise I merely served as a copy-editor. The writer in me bit my tongue. I did not write or ghost-write his talk.

When we got to the last slide with the black hole, I asked what he wanted to say.

“I am a human being the same as you,” he said.

“That’s your final message?” I asked. Yes, he said firmly and definitively.

He then practiced reading his speaking notes. I emailed them to the teacher and asked her to provide copies to the students. People sometimes have a hard time understanding Aaron’s speech, especially if they haven’t developed an ear for him. The notes served as a tool to make his talk more accessible to the students. We adapt and modify where we can.

Aaron presented his talk on Wednesday. I’m waiting on the student feedback from the teacher. When I get the evaluations, I’ll write another piece about how his talk went. That’s for another blog post.

In the meantime, I learned a lot about taking my sticky hands off the steering wheel (as Anne Lamott says) and ‘allowing’ Aaron to create his own damn talk about his own damn self. These are new lessons for me.  I’m sure I did still have a sticky finger or two on the steering wheel and I will vow to improve next time.

I’ve been so wrapped up in my own identity of being the mom of a kid with a disability that I’ve forgotten that I don’t have a disability. Aaron’s Down syndrome is his, not mine. I may be an old dog, but this kid is continually teaching me new tricks.

to what end?

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Me in my glory days.  Photo credit: David Hungate

I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years.  I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience.  I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees.  I’ve spoken at many national and international health conferences as an inspirational speaker.

Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management.  In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.

I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.

All of me is tired.  Getting cancer two years ago tipped me over the edge.  Improving health care for patients and families has been my life’s work.  My ongoing experience in oncology has shown me that things have not improved for patients one little bit.  To what end have I dedicated myself to this work?  What difference have I made?

I’m not trolling for compliments.  I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change.  There is no evidence in my recent clinical experience.  So why continue?

I started my advocacy work in pediatric health care after my son was born with Down syndrome.  I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital.  If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.

Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son.  What does this say about how I felt about the meaning of my son’s life?  Now I know that he has meaning by simply being human.  I don’t need to try to change the world to validate his worth and existence.

I would have also said that I did advocacy work to ‘make a difference.’  But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make?  Show me the evidence.

This past week I had a trifecta of events.  I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me.  If I had been less worn down and brave enough, I would have stood up and asked:  What can us patients do to improve Canada’s health care system?  His clear and factual accounts of the myths of Medicare hit very close to home.

“As Canadians, we are all too accepting of mediocrity,” he said.  “Once in the health care system, you ask yourself – what the hell is wrong with the system?”  These true statements chilled me to the bone.

Then I had an unpleasant encounter with a new oncologist.  And then a terrible appointment letter showed up in the mail.  My never-ending shitty patient experience just goes on and on and on.

What the hell is wrong with the system?

All my talk about kindness, compassion and the patient voice has been for naught.  (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).

The past two years I’ve slowly been withdrawing from the patient engagement world.  I no longer accept speaking engagements.  I don’t volunteer on committees or with projects.  I think: what’s the point?

I still rabble rouse on Twitter and Instagram and I write essays on this blog.  I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher.  But writing is something in my realm, in my control.   My own self tries to treat myself with respect and kindness.  I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.

I don’t want to deter you if you believe that patient engagement will change the health care world.  This has not been my experience but maybe it is yours.  But I must plead with you: Please don’t allow yourself to be taken advantage of.  Don’t let them ‘use’ your story.  Be particular when accepting opportunities.  Think, as I rarely did:  Why am I doing this?  What is the organization’s intention?  What is my own intention?

Zoom back 12 years and I was at a health conference with a team of family members and clinicians.  Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted.  I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.

I left the conference room and went into the elevator to compose myself up in my room.  I was naive and hurt.  The pain of this made me weep.  I had thought I was a full partner and I clearly was there only as a token family representative.

The elevator doors opened and another woman walked in.   It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.

“What’s wrong?” she said, gently hugging me.  “Come to my room and we will have a chat.”

I sat on her bed and cried, feeling betrayed and used by the clinicians.  She comforted me but then said firmly:

Don’t give ever them all of your heart.  Because if you do, they will chew you up and spit you out.  

I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself.  I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years.  Why have I done this?  I wanted to belong.  Attention massaged my fragile ego.  I had a need to be heard.  And yes, I wanted to make a difference.

No more.  I quit you health care.  Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.

I’m breaking up with you patient engagement.  You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.

just the way you are

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The older my son gets, the less I am interested in fixing him.  This has been a gradual dawning over the past 15 years, since he was first diagnosed with Down syndrome.  Our family now lives in a bubble that we’ve carefully created around us.  We surround ourselves with people who believe in him.  We purposely chose his high school where educators believe he can learn and grow.  If friends and family are uncomfortable or embarrassed by him they are no longer welcome in our lives.  We have lost many people. Our world has shrunk to the size of those who accept my son as he is.

It was not always this way. When my son was younger, I dragged him to many therapies and interventions.  I think this is something all families go through, which stems in part from the pressure we feel from the medical system to fix our children.  I was determined to have the best child with Down syndrome ever!  I also wonder if part of my need to change my son had to do with my own discomfort with his disability.  What’s the fine line between helping him reach his full potential and making him ‘normal’ so he will fit into the typically-developing world. This meant trying (and failing) to erase his extra 21st chromosome.  If I truly believed that disability is a natural part of the human fabric, why was I trying to change him?

When my son was born, I wanted to change him to be accepted into the world.
Then I wanted to change the world so he would be accepted. 
I finally realized that the only thing I could change is myself.
-Unknown author

This week I was at a CHILD-BRIGHT Annual Meeting in Montreal.  I stepped out of my bubble into the real world of academics, clinicians and researchers.  I realized how soft and warm my self-selected bubble is.  Not everybody feels that people with disabilities are fine just the way they are.

CHILD-BRIGHT is a collection of projects dedicated to child health research for children and youth with a brain-based disability.   Most of the research is conducted within a medical model.  I wrote down snippets of the language used by the researchers:

‘Quality of life’  ‘Deficits’  ‘Intervention’ ‘Problems’ ‘Bad Outcomes’ ‘Subjects’ ‘Populations’

I believe in my heart that most researchers are passionate about what they do because they want to help make life easier for our children.  I do appreciate their dedication to their work.  But I wonder if the dollars would be better directed to creating an inclusive and welcoming world for people with brain-based disabilities instead.  What my son really needs is a less-hostile world.  He needs people with influence to advocate for disability rights, inclusive education, employment, housing + basic assured income. (Advocacy has traditionally been a family’s responsibility.  But we are tired, so terribly tired, and we need help).

I’m not diminishing the importance of research.  But I wonder if we can expand the scope of research to include what matters to families and people with disabilities beyond chasing a cure. Maybe researchers could support families to celebrate (and help the world at least accept) our children just the way they are.

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.

 

 

 

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.