Bystander Kindness: Speaking Up and Speaking Out

During a recent well child check up, I asked a quiet 6 year old about school.  With a gentle prompt from her mom, she talked to me about how she's been trying to learn to speak up for other kids.  Intrigued, I offered that this is something grown ups need to practice as well.  Nodding in agreement, she said, "Sometimes kids make bad decisions and are mean."  "Yep," I responded, joining her on the carpet to play. "And then what do you say?"

Without looking up from the kitchen toys in her lap, my sweet six year old patient said, rather matter of factly, "I go up to them and I say, Stop saying that, it's mean." 

Speaking up and Speaking Out can be acts of kindness.

Learning to Speak Up is a necessary part of parenting a child with special needs.   Too often, parents second guess themselves as they advocate for their child's health.  "Am I becoming that parent," they wonder.   You know, the parent that the staff talks about in the break room-- the demanding or pushy ones. 

Parents soon discover that building a relationship with the provider makes advocacy easier.  There is a little dance they learn, a shuffle of sorts, between wholesome friendliness and immobile assertiveness.  When the provider likes to dance and everyone agrees on the music, well, then we've got a good time.  Whether it's liturgical or artistic, or improvisational, the dance flows and people feel connected and in sync.

Unfortunately, the dance is not always so smooth.   Grown up clinicians make bad decisions and say mean things.   Often, their comments and assumptions result from a lack of proximity to the reality of the caregiver's life.

Speaking Out takes courage when you may alienate the very people whom you depend upon to care for your child's well-being.

Bystander kindness is Speaking Out for the vulnerable, voiceless or marginalized.

Bystander kindness can be using our words and actions to create increased proximity between the world of the caregiver and the world of the health care team.   Beginning with a compassionate statement creates an invitation to increase our proximity.

"I imagine it's been hard to get much sleep since Henry has been so fussy.  When was the last time you got a decent nights rest, Mrs. Clark?"

"It is so stressful to watch a child lose weight.  I imagine you must be frantic with all of her retching."

Assuming positive intent and staying curious also open the door to increased proximity and a deeper awareness of the caregiver's reality.

"Tell me a bit more about what you mean by nothing seems to be helping?"

"What is your best guess about what is going on?"

And, sometimes, let's face it,  someone needs to push re-set with an apology.

"I'm really sorry, it seems that we have gotten off on the wrong foot.   Let's try that again.  This time we are going to do our very best to listen carefully to your concerns and questions."

Anyone on the team, or in the room, can Speak Out with bystander kindness.  With a deep breath we can all be back in the dance.

"I go up to them, and I say, Stop saying that, it's mean."  Kindergarteners can be so direct.  I wish it were so easy in our adult daily lives.  I wish it were always as safe.

Bystander kindness can also be compassion after the fact.

The elevator door closes leaving a shocked young medical student in a hijab speechless and near tears.  Confronting the angry man who has just hurled a racial slur, may not be safe.  Comforting the woman takes only time and acknowledging the horror of what happened.

"Oh wow.  Are you OK?  I'm so sorry that you had to hear that.  I hope you never have to hear that ever again."

Parents tell me that people often stare or try not to stare at their children with special needs.  One mom recently told me that "the crowds part at the Farmer's Market," as they move along looking for fresh produce and warm donuts.   Is it the wheelchair, the ventilator, the oddly contorted smile on their child's face?

Bystander kindness at the Farmer's Market on any typical Saturday morning might look like casual conversation about the best booth for beets.






Jerron Hermon, pictured above, is a professional dancer with hemiplegic cerebral palsy
https://www.youtube.com/watch?v=WbA_XYPZAPA

The Necessity of Kindness

At a recent meeting of the American Academy of Cerebral Palsy and Developmental Medicine, Donna Thomson gave a keynote address, reflecting on her own experience as a caregiver for her son who is now a young adult.  Speaking before several hundred health care professionals and researchers, she told the story of raising Nick, who has severe CP and is medically complex.  Nick, who is almost completely dependent on caregivers, has required repeated, often lengthy hospitalizations throughout his life.  In her remarks, Donna described the stress of 24/7 care taking, the pressure of repeated decision-making without clear best options, the necessity of being an ardent advocate without alienating those who have the power to effect the fragile balance of day-to-day caregiving, and the ironies of living in developed societies with abundant resources that are not fairly distributed to people with disabilities.  Donna was preaching to the choir that day, since all of us in the audience work with children like Nick.

So, it caught me up short when Donna finished her remarks with a story about a recent hospital admission.  As I remember it, Nick had been suffering in terrible pain from chronic, disabling complications of his CP.   The family and the medical team had tried everything they knew to provide a bit of comfort, to no avail, and everyone was completely exhausted, emotionally and physically.  The only option, after weeks of sleepless nights, and constant agony, was to return to the hospital for another procedure that had no guarantee of success.  Even getting Nick to the hospital was excruciating, so when he was finally settled and the nurse asked Donna if there was anything she needed, I was not truly prepared for her response.  Nick's admission, after all, was a routine occurrence for many of us in the room.  Donna looked out into the audience and she said to us that what she most needed at that moment, and what parents like her most often need beyond medical expertise, and clear communication, and an ethical distribution of resources, was kindness.  "Right then, I just needed a little kindness." I remember that she offered this quietly, with a slight nod, and a well placed pause for all of us to catch a collective breath.

Not sympathy.  Certainly not pity.  And not another mini-lecture about the risks and limited benefits of the upcoming procedure.  Parents in Donna's shoes need kindness on a routine basis, in any form, from anyone who cares to offer it.


Donna Thomson writes in her book, The Four Walls of my Freedom: Lessons I've Learned from a Life of Caregiving, "The wellbeing of children and their parents is so deeply interconnected that usually parents cannot separate the two.  Certainly, I couldn't...  When a mother experiences a quality of love that is desperate and feels hopelessly inadequate at times to meet her child's needs, her sense of wellbeing is very poor."  What parent has not felt that desperate love and inadequacy in some way, at some point in their parenting.  Imagine the additional impact when your child lives on the edge of mortality, or chronic pain, or physical and emotional decline.   Imagine the impact, likewise, of a simple act of kindness.

I have been thinking about the impact and necessity of kindness in health care.  Since being awakened by Donna's truth-telling, I have tried to be more intentional about offering kindness and practicing kindness with my patients.  I have sought out opportunities to teach kindness to students, and looked for ways to offer kindnesses in my day-to-day life.  What I am learning is that kindness is most often met with gratitude and returned kindness.

I left the lecture hall after Donna's keynote and knew that I had heard the truth told by someone who had the courage and humility and wisdom to speak authentically from her own experience.  I left the annual meeting with a renewed commitment toward offering kindness.  Now, via this blog, I hope to post stories, and musings, that reflect and inspire kindness and consideration.   Call it my offering of kindness.

Jim