i feel for you

The blurb on the back of The Empathy Exams drew me in:  “Beginning with her experience as a medical actor, paid to act out symptoms for medical students to diagnose, Leslie Jamison…asks essential questions about our basic understanding of others…”

While I’ve never been a Standardized Patient (or SP as they are called), I have presented our family story to medical students – my only intention is to help them understand the perspective of having a child with a disability and what I’ve gleaned about being a child with a disability.

The Empathy Exams is a book with big ideas;  its well-crafted stories are complemented with touches of biography and research. Leslie Jamison shares stories of people who have been forgotten: people in prison, artists in Mexico, extreme athletes, folks with an unusual skin disease, women who have had abortions.  Her question to me is: can we feel as these people feel, once we understand their story?

The answer is, of course, no – we cannot feel exactly as others feel because we are not them, and we have not experienced their journey. But, importantly, we can catch glimmers of recognition of ourselves in their stories, and we can open our hearts to their perspectives, and imagine (or even better, listen) to how they feel.

I’m often outraged by the language spewed towards our community, or by my son’s lack of birthday invites, or generally by the injustices towards people with disabilities in this world. I usually thrash around in my outrage all alone.

But a light bulb went on after reading The Empathy Exams.   Nobody is going to feel as strongly as I do about Aaron. My husband of course comes close, but he’s a more rational human being than I am. My emotional outrage is mine alone. I might be furious about the number of times Down syndrome is referred to as an ‘abnormality’ in an article, but unless the writers and editors try to drum up even a tiny bit of empathy for people who love people with Down syndrome, they are just going to shrug and say, meh, well who cares.

I believe that compassion can be nurtured everywhere – even on an editorial board, or in a corporate boardroom. Today I went for a walk in the rain with a dear friend whose daughter died a few years ago. My glimmer of empathy comes from the realization that this could happen to me, too. While I will never understand how it feels to lose a child, I can understand how it feels to deeply love my children. I can apply that understanding to open my heart to different types of experiences, even if they aren’t my own.

Jamison talks in her book about “empathizing with courage.” She says, “empathy isn’t something that just happens to us…it’s also a choice to make: to pay attention, to extend ourselves.”

How I wish the world would slow down and think: how would I feel if that were me, instead of rushing about, dismissively shrugging and saying, this is not my problem.

If you are a human being, this is your problem, for we are all in this together. One day you will be knocked off your pedestal like I was, and we will be all rolling around in the muck together. Stripped of our titles, our big houses, our health, we are all the same inside:  we are all in desperate need of love and belonging.

This quote in the front of the Empathy Exams says it best: I am human: nothing human is alien to me. –Terence, The Self-Tormentor


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