Friday, September 18, 2009

'Owen doesn't have a single friend'

Can children with severe disabilities and limited communication have friends? As parents, it goes without saying that we want our children to have friends, but Jennifer Johannesen has found this isn’t in the realm of reality for her son Owen, 11 (see right of photo above). Owen is deaf, non-verbal, non-ambulatory and requires full support for all aspects of daily living. His brother Angus, 9, is typically developing (at bottom of photo). You can read Jennifer’s eloquent writing about life with Owen at Yes or No/Big Decisions. Here she reflects on Owen’s lack of friends over the years. Thank you Jennifer!

'Owen doesn't have a single friend'
By Jennifer Johannesen

When Owen was younger, my biggest wish for him was to have friends. I created inclusive play environments, sent him to programs that could seamlessly accept him and his support workers, and spoke positively to other children about how Owen was really just like them underneath. I bought into this notion that if only other kids could see the ‘real’ Owen they would want to be his friend and spend time with him. They would learn how to use sign language and his communication method of the day and even use his switch to play turn-taking games!

There is value in these endeavours and in hindsight all were worthwhile, for a whole slew of reasons.

But what about friendship?

I ask myself now, even if this idyllic scene came to fruition, how is this even close? Sure, Owen has clear facial expressions to indicate his overall likes and dislikes, but nowhere near the nuance of language or communication required to establish an independent relationship with someone. I guess we can define friendship any which way, but even the most simple definition must include the requirements of being reciprocal and voluntary.

Based on this, I can say now with confidence that Owen does not have a single friend. He does not choose who he spends time with, he does not remember birthdays and he does not lend a helping hand in times of crisis. And there is not a single person who comes by the house to see Owen who isn’t family or a paid caregiver or from a social services agency.

Here’s why this is okay:

Owen experiences moments of connection throughout his day that make him glow from head to toe. When his brother holds his hands walking down the street. When Sallyanne or any of his other caregivers arrive for the day and he nearly jumps out of his seat with joy. When Angus’ friend makes faces at Owen to get a laugh, and announces “Owen’s cool!”

I love and appreciate these moments for what they are – and I don’t pretend they’re something they’re not. Calling anybody his friend does a disservice to Owen and these experiences because it’s simply not real. It’s an attribution of qualities that only serves to demonstrate the generosity of spirit of the person saying it. Or to mask the discomfort of reality.

And it really is okay that he doesn’t have friends because I see value in the interactions he does have. More important, I think he values those interactions. And I don’t place judgment on whether or not this is better or worse than what we call friendship.


Wow. I am filled with joy AND sadness to read this. I've never seen it written and written so beautifully. Those thoughts we of like mind share and never dare to write. Thank you, Jennifer, for an amazing post.