Wednesday, October 15, 2014

Empathy as Communication Strategy for People with Down Syndrome

My son is cute. Sometimes painfully so. He also has a kind of intensity to his love. Here's a story from my newest piece at Al Jazeera America (please read it and share it so they publish more pieces on disability!).
At the end of every day, Nico walks into the kitchen, wraps his arms around his chest, then says and signs the word “love.” He calls us — “Mommy!” “Daddy!” “Ellie!” We all come, he leans on a parental shoulder, and the four of us embrace for an intense daily moment of connection. His love is the glue that holds our family together. We are intensely lucky and happy.
This is complete true and, more important, it is Nico's ritual, not ours. He decided that he wants a group hug to complete his day, before snack and brushing his teeth. We, joyously, comply.

My piece today is against the notion of cute, or even "cuteness porn." I've written similar pieces on the "long game" (which cute doesn't really help, I think) and the word "angel," but this piece, I hope, fleshes out the ideas more fully. It was really sparked by seeing the community response to Richard Dawkins' statements about abortion (linked to in the Al Jazeera piece) and Down syndrome, in which so many parents responded by showing cute pictures, as if cute would refute Dawkins' eugenic principles. All it really does is, at most, slide the eugenic line to less cute people.

I'm not interested in cute. I'm not interested in physical appearance. I am, however, deeply interested in the intense emotional interactions that many people with Down syndrome bring to their everyday encounters.

Often this gets labeled sweet, innocent, or angelic. In fact, that's totally missing what typically happens. People with Down syndrome often - and my son Nico does this par excellence - intensify the emotions in a space around him. Happiness or sadness, funny or anger. This isn't passive, the intensification is deliberate and person. It's not an accident, either, as it's not reflection, but a taking of emotion and re-directing it.

I see it as a form of communication, one especially useful for people whose disability often results in a much greater ability for passive understanding than active speech.

This is, in general, the kind of shift I'd like us to see - from passive "he's so sweet" to active, "he uses his facility with emotion as a means of communicating." It's vital, because Nico can't consistently speak for himself, and I don't want to put words in his mouth. Instead, I'll watch, think hard, try to understand, and share what I perceive.

Now please, PLEASE, read and share my Al Jazeera piece. As a freelancer, I depend on you to help move my pieces to a wider audience, and am always grateful.

5 comments:

Jisun Lee said...

"People with Down syndrome often - and my son Nico does this par excellence - intensify the emotions in a space around him."

Do you think it is wise to take one characteristic of your son and generalize it to an entire population like that? I certainly would never presume to speak for any majority of people with Down syndrome in that manner, especially in the context of writing a piece that highlights the danger of positive stereotype. Your contention that this intensification of emotion is something that all people with Down syndrome do (I'm not exactly even clear on what this is that you're describing--nonverbal ways of being emotive? Doesn't seem like a Ds thing but more about being nonverbal), feels like a simple repackaging of the cute phenomenon in a slightly more complex manner. Complex stereotypes are just as, perhaps even more, damaging than simple ones because they give a better illusion of reality.

Share your perceptions, by all means, but please be careful. I hope you know that I'm a supporter of your writing, but the fact that you've got a wider audience lately makes this even more important that you're careful with your assertions of Down syndrome in general versus your individual experience with your son.

David Perry said...

Well, you're right, this is a hypothesis. It's not an empty one though. I've actually done some research on the function of empathy in people with Down syndrome, the ways it does and doesn't work.

What the research shows is that whereas most people move quickly to recognize the distinction between their emotions and the emotions of others, people with Down syndrome generally make that transition more slowly.

Unfortunately, most of the research has focused on distress - http://www.ncbi.nlm.nih.gov/pubmed/12635971 - for example, where you get:

"Results indicated that compared to the other children, children with Down syndrome responded to distress in others by looking to them more, and offering more comfort in the form of prosocial responses. However, in a hypothetical empathy situation, children with Down syndrome were less likely to feel the same emotion as the protagonist than were the typical children. Children with Down syndrome differed from the children with nonspecific mental retardation only in their response to distress in others. The children with nonspecific mental retardation were more similar to than different from the MA-matched typical children.
CONCLUSIONS:
These results suggest some etiology-associated differences in empathy and response to distress in children with mental retardation."

We get the "sweet" emotional stereotype out of this kind of behavior. I believe it's a communication tool, not a simple passive mirroring.

nana said...

Thanks, David, for that article. I am the parent of two children with disabilities (not Ds),who were both "cute" as young children, I always fought this perception, and the phony awards for "best smile,' knowing that cute does not last. Pats on the head do not help in the face of behavioral disorders, mental health issues, and society's failure to provide a secure and future for those with disabilities.

I don't know if empathy is the word I would use, but your comments about emotion as communication are very interesting. I think many people (not all, never all) with disabilities have a high emotional intelligence. It's an idea I have to think through before I can say more, but I'm looking forward to more on this from you.

Jisun said...

Ok, but again, I think it is a huge leap to make statements about "people with Down syndrome do xyz" after a handful of studies. Had you written your post pointing out that you've been reading these studies and wanted to explore what they mean, that would be very different. Instead, you took one anecdote and used it as a launching point to talk about the entire group. Off the top of my head I can think of a number of ways this might have little to do with T21. Maybe you and I can have more nuanced conversation about this (which I appreciate) but I really think that for a wider audience, where we are fighting "otherness" so hard, that nuance is completely lost. I have no issue exploring tendencies and group commonality, but the presentation makes a huge difference. I see now what your intent was, but that didn't come through at all for me.

David Perry said...

alright