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.

cut the red tape

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My son is 15 years old and loves to participate in sports.  We’ve learned the hard way that most sports teams don’t want him because he has Down syndrome.

Alas, true inclusion in recreation or sports has rarely happened in real life particularly as Aaron has gotten older.  One exception has been his high school, where he has heartily been welcomed in Physical Education classes and his teacher has embraced the modifications that he requires because of his bum knee, intellectual disability and short stature.  Hurrah for the inclusion champions at his school.

Outside of gym class, Aaron been pushed into segregated sports activities.  I’ve come to peace with this, despite my philosophical insistence on inclusion.  Inclusion to me means belonging in the bigger community.  Being ‘allowed’ to play sports with other kids who are segregated is not inclusion.  But it is what it is and it allows my kid to be active with a diverse group of people and so that’s a positive thing.

In the community, I’m not going to waste my precious advocacy energy fighting to have a team include Aaron if they don’t want him.  So he’s slowly been moved over to segregated sports and recreation programs like those at Challenger Baseball, Down Syndrome Research Foundation and Special Olympics.

Surprisingly, here in the segregated world, accessibility comes into play too.  There is a spectrum of ease of participation.  Challenger Baseball says – your kid wants to play baseball?  Come on in!  We don’t care where you live or what’s going on with you!  Just show up!   Down Syndrome Research Foundation says welcome to our Bollywood and Taekwondo classes!  Sign up if you can afford it (if not, you can ask for a bursary)!  You don’t even have to have Down syndrome!  These are good models and make it easy for kids to be active and have fun.

Now I pause at Special Olympics.  I know Special Olympics is a beloved institution so I’m going to get my hand slapped for this.  But I am going to say it anyway.

Special Olympics has grown into a massive organization. Along with growth comes bureaucracy. Accessibility for people with disabilities here is marred by red tape. Your athlete has Down syndrome?  He must get a controversial neck x-ray before he can register.  You live out of region and your local program is full?  You aren’t welcome on another team, unless you get approval from your home region to transfer over.  And then the transferring region has to approve you too. That requires having many forms filled out and then waiting and waiting, as my son has been doing for the past month.  He can’t attend practice until all the paperwork is done and the season has already begun.

Who loses in the red tape environments?  It is the kids themselves.

I will surmise when an organization gets too big, it drifts away from its grassroots beginnings and loses sight of the people they are supposed to serve.  It becomes about bureaucracy, policy, risk-management, staff/volunteers and rules, not the people themselves.  I’ve seen this happen over and over again with support groups and health/human services organizations too.  This is a darn shame.

This is particularly frustrating because I keep reading articles about how children with disabilities struggle with being physically active.  If we know this is true, why aren’t we making it easier, not harder for kids to participate?

I know that people working and volunteering for these organizations are well-intentioned.  I would ask them to pause and consider:  are your policies and rules causing additional barriers for people to participate?

If they are, I’d respectfully suggest it is time to untangle and take a good hard look at all your red tape. Who is this red tape serving anyhow?   Has red tape become a barrier for people to participate?  And is that okay by you?

Instead, let’s do what we can to let kids be active and have fun and never forget that sports and recreation is not about us adults.  Make it easier, not harder, for our kids to participate.  Help them find ways to be as healthy as they can be – and in the process, to find belonging and friendships too.

 

our sisterhood of pain

IMG_1414It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. -Audre Lorde

I bring my red Moleskine notebook to every oncologist appointment. In it I’ve carefully recorded the date and the questions I need answered. I haven’t seen my official oncologist in months. I catch a glimpse of her in the staff room and hallway, but she doesn’t see me. Instead, I get the family physician in the clinic or the oncologist resident. I know this is how it works. I’m post-treatment with a boring low-grade cancer – and I don’t want to be an interesting case for an oncologist – but I can’t help but feel unimportant by this rejection.

Regardless of who I see, I try to be organized and look put together for whoever shows up in the treatment room. If I’m feeling stronger and in self-advocating mode, I’m sure to dress up and have make-up on. Is it wrong of me to do this, to lean on my privilege? I’ve learned over the years that I get listened to and taken seriously by clinicians if I look and act like them as much as possible.

I once heard of a mom who was a First Nations woman who had a kid with a disability. Every time she went to the children’s hospital, she dressed up in a (goddamn) business suit to purposely overcompensate for the shocking power inequities between patients/families and health care professionals. This power imbalance was exacerbated by the fact she was Indigenous. Is this okay? No. No it is not okay.

The worst part is that many health professionals don’t even realize they contribute to these imbalances with their obliviousness to their own privilege. I wrote a review of the brilliant book When The Spirit Catches You, which highlights this concept and is a must-read for anyone working in health care.

I don’t need someone to give me a voice. I already have a voice. I need someone to listen. If I have to get dressed up to be heard, I get dressed up. Should I be able to present disheveled in my sweatpants? I should, but then I’ll be judged. This isn’t paranoia; it is my reality.

I’ve been written off as a ‘hysterical mom’ many times when I’ve accompanied my son to the clinic or hospital. I’m careful not to show emotion – to not cry or to raise my voice, even if I’m upset. Recently, I asked a pediatric audiologist to ‘please speak to me more respectfully’ so she would stop her sighing and eye-rolling at my questions. I shouldn’t have to ask to be treated respectfully. My standards are not too high. As a patient or family member, I wish to be treated by health professionals with the same common courtesy that is afforded to a colleague.

(Oh wait, health professionals don’t necessarily treat each other courteously. Scratch that concept). Think of me as someone you love, then, if that helps. As your sister, wife or mom. No matter how well-dressed or well-spoken (or not) I am. This Cleveland Clinic classic video highlights this empathetic approach.

Recently, there was yet another article published in a medical journal written by a physician who became a patient. I appreciate the author’s humbleness and recognition of his own privilege. Here is a male oncologist/patient, asking for the receptionist to smile. I’ve been calling for receptionists smile for years, but who am I? I am just another layperson patient, a middle-aged breast cancer patient, a mom of a kid with Down syndrome. I do not have an oncologist’s platform.  Health care loves to listen to doctors.  To regular people, not so much.  Therein lies the problem.

It is important to note that I am white, well-off economically, generally well-spoken and I have worked in health care administration my entire career – specifically in patient and family experience for the past 13 years. Alas, I am also a woman and a patient, which knocks me down a few rungs on the health care ladder of status. I struggle to be taken seriously.

There is starting to be stories about how much of this power imbalance is due to gender. I applaud these stories. May they continue to be told.

I wrote about my own ‘lady’ experience in March, being brought to the Emergency Room by ambulance in excruciating ovarian pain. Joe Fassler writes about his wife’s similar story here in The Atlantic.  Sarah Frey also recently published this piece on gender-based health care for CBC news, and Jennifer Brea’s important film Unrest is about myalgic encephalomyelitis, a neglected women’s issue. There’s so much more to say about this gender imbalance in our sisterhood of pain.

The great imbalances reach other people too – those in the LGBTQI2-S community, those with disabilities, those from a different race or culture – I mean, I could go on and on. What does it take to be listened to by the health care system? Do we have to be exactly like health professionals to not get diminished or dismissed? Mostly yes, but sometimes no.  Let me share a positive example, my recent little ray of light.

I had my oncology appointment on Thursday. While I approached the day with oncology dread – waking up at 5 am with my head whirling; carefully preparing my questions in my little notebook; driving white-knuckled to the appointment; avoiding parking at the cancer hospital (the parkade there sends me into a medical PTSD tailspin); taking an Ativan to calm the hell down (an Ativan prescribed to me by an oncologist – that I only take when I have a health care appointment #irony); picking up a Starbucks to bring with me to the clinic as a crutch/my armor; walking in like my friend Isabel taught me, like I am The Queen; and asking the medical assistant not to tell me how much I weigh (the very first thing they do there is weigh me, my least favourite activity on earth).

Still, despite my many strategies to stay strong, I sat in the windowless, joyless clinic room, waiting for a knock on the door, feeling small, hunched over and nervously picking at my fingers until my hangnails bled.

In the end, the person who knocked at the door was a senior oncology resident, a pleasant man who forgot to introduce himself, but who was otherwise lovely. We had an actual conversation about my four questions in my notebook – a back and forth – where I asked and he shared information and options. I listened and then we discussed resolutions. I felt as if we did tackled all my questions together, in a most collaborative way.

I left this follow-up appointment feeling greatly relieved. If this doctor thought I was hysterical or difficult, he didn’t show it. If he was rushed or having a bad day, I didn’t know. I appreciated his careful listening and consideration. It was a good experience. Yet it was extraordinary in the fact that a positive patient experience is exceedingly rare. I felt treated with courtesy, compassion, validated, understood and listened to. This is how it should be, no matter one’s gender, gender identity, ethnicity, citizenship, religion, race, disability, orientation, dress, eloquence or otherwise. (My apologies if I’ve missed anybody or used the wrong terms – I’m still learning too).

It is humanity we all so crave from the health care system – no matter – or maybe because of – our different expressions of human identity. We are all people first. I’ll keep on squawking about health care and I hope you will too. Use your voice. I’ll end with another quote by the glorious Audre Lorde, who always says it best:

When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

two steps backwards

See when it starts to fall apart
Man, it really falls apart – Tragically Hip

I am watching across Canada as the patient and family engagement movement in hospital settings is taking two steps backwards.  Councils are being disbanded, patient and family staff members (whether they are paid or unpaid) are resigning or being forced out of positions and are being replaced with clinicians.

There is a real fragility that underlies the patient engagement movement.  If patients and families behave themselves, then all is fine.  The minute there is a change in leadership, or something gets hard – like an ethical issue comes up or there is conflict – then BOOM it is over.

It seems as if this movement is so precarious that it can only survive when things are going well.  I define going well as: patients and families mirror their behaviour as close as possible to the behaviour of clinicians and administrators. We must dress like them, talk like them, show up when they tell us to and agree with them. Of course, this erases any hope for diversity and leaves the pool of engaged patients university-educated, articulate and economically well-off, just like the clinicians and administrators themselves.  Patient engagement quickly becomes doomed the moment there’s a sniff of any difference or contention.

There is now a trend throughout the country to replace paid families or patients with health care clinicians in patient engagement roles.  I think this is because:

  • The patient/family engagement movement has become too successful.  We have amassed too much power in the eyes of administrators.  This, ironically, means that engagement has become no longer tokenistic and is finally meaningful.  But to have power you have to take power – and administrators and clinicians simply aren’t willing to give their power away.
  • Paid family members and volunteers are not ‘professionals’ (nor should they be, especially if people are truly looking for diversity) but health care is built on the structure of professionalism.  Having laypeople make decisions in ways that are not tokenistic is just too much for most bureaucrats.
  • The way patients/families are treated at the organizational level mirrors the way they are treated at the point of care.  If there is bad morale and low patient satisfaction at the bedside, then efforts in patient engagement at the organizational level will suffer too (and vice-versa).
  • Many people in senior leader positions do not understand the role of families/patients in organizations.  They might understand the bedside engagement, but the patients in organizations concept is new and poorly understood.
  • Health care culture is also exceedingly slow to change to new ways of doing things.  Patient engagement at the organizational level shakes the status quo. In the Canadian health care system, the status quo does not wish to be shaken.
  • Patients or families in paid positions, on councils or committees do not have a common job description, standard training or defined core competencies. In other words, they are not regulated in any way.  The health care environment is one that demands structure and regulation in order to gain credibility and respect.
  • Patient engagement still butts up against some professions and threatens them (I’m thinking of those clinicians who think it is their job to advocate for patients, not the job of patients and families themselves).

Replacing patient and families with clinicians swings the pendulum back to where we were 15 years ago.  Clinicians are now speaking for us instead of creating environments where we can speak for ourselves.

I’ve laid out the reasons for this problem and will continue to ponder solutions.  I would suggest that patients and families first abandon any tokenistic work right now and search for the rare environments where true engagement is still happening.  Be picky about how you spend your time.

For instance, my colleague Isabel Jordan has found success as a family partner in the area of research.  While some hospitals still have the reputation of being champions in patient and family centred care, meaningful engagement in the hospital world is becoming rare.  If you find a place where you are being treated as a respectful partner, hang onto them tightly.  These scarce places seem to be going the way of the dinosaur.

It is time for patients and families to regroup and rise up again on our own and abandon the shackles of the health care system.  How do we do this?  I think the answer lies outside of the system, not within it.

One thing we can do is to keep telling our stories on our own platforms instead of politely waiting in the wings for conferences, hospitals or universities to extend us invitations to share our experiences.   Use your voice now.  While the system now seems to prefer that professionals take over speaking for us, never let them steal your story.  Your story is the one thing that is yours. Protect it fiercely.  Now is the time for us to take our power back and we will rise up again, one story at a time.   xo.

Edited to add:  I’ve written about both best practice + poor experiences in patient engagement here: here, here, here, here, here, here, here, herehere, here.