How Patients Included is really about Inclusion

 

I stopped going to health conferences when I was diagnosed with cancer two years ago.  With this pause came perspective.  As a mom attending pediatric conferences, I often had to beg for compensation if I was a speaker.  Even if I was an attendee, I had to go through long, drawn-out negotiations with conference organizers and accounting departments to get my expenses covered.  Every single time I went to a conference there was a cost to me financially and personally.  There was a cost to my family too.

It started to feel like I was an add-on to the conference as a token patient just so they could self-accredit and say they were Patients Included.  With my pause in conference-attending, I now see that I didn’t just FEEL like a token patient, I WAS a token patient.  I now have the clarity to observe that conference organizers treat other patients and families shabbily too.  I would like this practice of shabby treatment to stop.

I was going for one of my regular walks recently and chatting on the phone with Isabel Jordan, who is the co-author of both this great article about compensation and the Patients Included movement.  We have had many conversations about partnering with patients.

My epiphany as I was crunching along a forest path was this:

The principles behind Patients Included at health conferences and the inclusion of disabled people are the same.

Inclusion is inclusion.  Take a look at the now-famous diagram of inclusion that I’ve posted above.  Let’s look at each of those circles under a health conference lens:

1.  Exclusion

For years, patients have been excluded from health conferences.  (This still occurs – even with Patient Engagement conferences.  If you can’t see the irony with that…).  For instance, at cancer conferences in Canada, the idea of inviting patients is still a brand new thing.  Most times we just don’t get invited.  Or one super-celebrity patient gets invited and nobody else. That, too, is exclusion.

2.  Segregation

Sometimes a group of chosen patients are invited to a conference.  There patients are ‘allowed’ to have their own sessions, separate from the rest of the conference.  This is better than exclusion, but it is still segregation.

3.  Integration

This where patients are ‘allowed’ to attend and ‘allowed’ to be in the same room as the other conference attendees.  I’ve been to those conferences – us patients often clump together at sessions and social events and not recognized by the other conference-goers.  Literally nobody saves us a spot at their table, so we sit at our own tables.  Most conferences are like this.  Patients are reluctantly invited and not embraced or accommodated to be full participants.

4.  Inclusion

This circle depicts inclusion.  This is something to aim for and illustrates the intention behind the whole Patients Included movement.  See all the coloured dots that aren’t green?  Those spots are all the patient attendees.  Here we are on conference planning committees, invited (and paid) as speakers and sitting at the big kids’ table with everybody else.  It is important to note that there can be exclusion even within this inclusion model.  That happens if the same patients are invited and attend conferences over and over again.  Within patient groups there can be exclusion too.

Hanging out, patiently waiting, on the other side of inclusion is belonging.

In talking about inclusion of kids with disabilities, Sara Pot – paraphrasing from John Swinton – says it best:

Inclusion = we’ll make room if you show up.
Belonging = you need to be here and you’re missed when you aren’t here.

Now apply this to health conferences.  You have to work your way through these circles and do inclusion right before you even get close to belonging.  Right now, many conferences struggle with even making room and helping patients show up.

Cynical me wonders if health conferences truly want patients at “their” conferences or if they see Patients Included as a tokenistic trend and a flavour of the month.  This would be a real shame and I think a grave misuse of the intention of the original Patients Included charter.

Optimistic me believes that authentic patient inclusion at health conferences can be done.  The key is that patient inclusion (and eventual belonging) will only happen if we do it all together.  If you are unsure if your conference is truly Patients Included – beyond accrediting yourselves and putting Patients Included on your website – you need to ask patients themselves.  Bonus points if you seek a diverse assortment of opinions and don’t just talk to your favourite patients.

power

Note:  If you are interested in improving your health conference, I’d recommend you consult with patient partners early on in your planning.  They can help light the way. I do know patient partners who do this kind of work – send me an email and I can connect you up…

sue on the radio talking about cancer

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I had the opportunity to be a guest on two Voice of America Teen Wealth radio shows with host Brandi England. The first show went smoothly at the end of April. (Here is the first episode).

The second show was last night. The topic was cancer. Here it is if you have 54 minutes to spare.

It has been two years since I was diagnosed and I have not spoken out loud about cancer beyond a therapist’s room.  My immediate family don’t really enjoy being reminded of my cancer and friends rarely bring it up.  I’ve written a lot about cancer but never had a public conversation about how it feels to have cancer.

Nobody wants to talk about cancer. That’s a fact. This is because cancer is hard to talk about. I found that out last night. This second show was less smooth and there were more um’s and ah’s from me. I was much less polished than the first show, where I talked about being a mother and having a kid with a disability. Cancer is not that familiar to me. I’m still figuring out what has happened to me over the past two years and it showed in this radio conversation.

Why was it so hard for me to talk about cancer?  It is the relative new-ness of the topic for me. It is because it is hard to inject humour into the conversation and I like to use humour to connect with audiences.  I mean, with other people who have had cancer, we often laugh hysterically at the ridiculousness of it all.  But for the general public, laughing at cancer is taboo.  (Although at one point on the show, I shouted:  I DON’T NEED YOUR THOUGHTS AND PRAYERS).  I’m always aware that the people I’m talking to probably had a loved one with cancer and watch my words to make sure I’m respectful of that inevitability.  People have all sorts of whacky theories about cancer, too.  Cancer is a muddy minefield of a conversation topic.

In the end, here is some of what I said:
Cancer stopped me in my tracks. It was my great reckoning.
It’s actually pretty horrible telling people you have cancer.
Cancer really messes with your mind. It is lonely and isolating.
Pretending to be brave and strong is exhausting.

I also talked about the horrible task of telling your own children that you have cancer.

Afterwards, my husband said: you did a good job with a hard topic. I’ll take that. Instead of beating myself up, I’ve decided to practice self-kindness.  I do want to bring cancer out of the shadows and uncover its dark secrets. But it is tough. Today I have, as Brené Brown says, a vulnerability hangover.

The cancer part of my life is not wrapped up with a tidy pink bow. There is no happily ever after.  My story continues on, messy and undone. And if we are honest about it, life in general is messy and undone too. We are all but works in progress.

 

The Down Syndrome Rocks Talk, part 2

I thought the best way to share my son’s talk to a high school class about having Down syndrome was to simply share his presentation.  This talk was designed and written by Aaron himself.  The only adaptation we did was to provide copies of the speaking notes to the students, in case they had challenges understanding his speech.

I asked Aaron if he was okay with me posting his slides and his speech on my blog. He said yes.  (People with intellectual disabilities are capable of giving consent.  The problem is that we rarely ask their permission, or we don’t ask it in a way that is understood).

Enough with the mom commentary!  Here it is, standing strongly on its own.

Slide1

 

Hello, I am the only cool kid in at this school who has Down syndrome.  This is what I want you to know about Down syndrome.

Slide2

There are many kinds of disabilities in the world. Down syndrome is but one of them. I was born in 2003. When my mom and dad made me, I had Down syndrome.

I have three copies of the 21st chromosome. I have 47 chromosomes all together. You guys have 46! I have more chromosomes than you!

Slide3

 

How am I different?
My face looks different
I have low muscle tone
I need some help at school to learn

 

Slide4

I am the same as you too. How I rock: I like dabbing/flossing, Fortnite, Nerf guns, luxury cars and sports.

I also am an actor. I am not in Hollywood yet but I am signed with a talent agent. My social media is: YouTube
Instagram: @aaron.waddingham

Slide5

What I want you to know is that respect is the key. Respect means I want to be treated the same as you. I just need a bit of extra help.

Slide6

 

 

I am a human being like you.

 

Aaron delivered the presentation in a lively way, throwing in some jokes, demonstrating how he could bend his thumb back because of his low muscle tone and dabbing and flossing too.  Amusingly, when he said I have more chromosomes than you, he added BOOM!  IN YOUR FACE!

The students were very quiet.  The only time I spoke up during his talk was to say:  Aaron is a funny guy!  It is okay to laugh.  The permission to laugh with Aaron (instead of at him) seemed to help them relax.

I facilitated a question + answer session and there were thoughtful questions about stigma, independence, health concerns and the differences in education systems between provinces.  I felt a bit desperate to show them that we have a rich and full life (because we do), so I ended up rambling too much.  There are always lessons for me after every talk.

At the end, I made a request.  I said if they saw kids from the Access Program (the school district’s ‘special ed’ program) in the hall, not to be afraid to go up and say hi or give a fist bump or high five.  At least acknowledging people’s presence is a start on the long road to belonging.

I felt extremely proud of Aaron’s moxie.  He stood up and spoke for himself.  I was reminded how much he has to overcome to be a part of this world.  I admire him so much.  His ending comment:  I am a human being just like you – offers up with great clarity, everything you need to know about Down syndrome.

Did the talk make a difference?  I am not sure we will ever know for sure.  But if one person in that class is even just a little less afraid of a disabled person, then Aaron’s job was well done.

The Down Syndrome Rocks Talk, part 1

Slide5

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.