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
Well, I teared up reading this post. I think because I felt so understood and that is very rare. Thank you.
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