By Sue Robins

Recently, I was asked to speak to all the teachers at my son’s high school about “What Inclusion Means to Me.”  There would be about one hundred educators in the audience for their professional development (PD) day.  I sweated out my approach, talking to the special education teacher who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the country.  I was desperate to understand my audience, not to misstep, to represent other families well, for I had a lot of skin in the game.  The high school I was speaking at was where my son Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to an audience of parents and teachers on this same subject, almost three years ago in Alberta, Canada.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were traveling on a strong academic path.  One mom had angrily protested from the back of the room, “your kid is taking away from my kid’s teaching time!”  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s excellent bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some beautiful quotes about our kids being brave and presuming competence. I was very aware of not being self-serving – not only concerning myself with my own son’s experience but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behavior’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s PD day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron. I spoke about when he was first diagnosed (the baby we expected was not the baby we got).  I addressed my struggles with my fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974. I acknowledged the good work teachers do – how busy and exhausted they are too and asked them to reflect on why they chose to teach.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids in special education in the school, no matter how simple:  learning the students’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My intention was to touch hearts to change minds.  My key messages:

-the value of children with disabilities (the disabled do the work of love, says Ian Brown)

-expanding the definition of diversity to include different abilities

-to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in our particular school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose to teach.  In the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one. This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the same messages I share with healthcare audiences, as I’ve realized that these concepts are profoundly universal.

In the end, for me, everything always circles back to Raymond Carver:

And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth.”

― Raymond Carver, A New Path to the Waterfall

Photo Credit: Bradley Huchteman/Flickr

sue robinsSue Robins is a writer, speaker, and mom of three.  Her youngest son Aaron is 13 years old and has Down syndrome.  Her essays about motherhood have been published in the New York Times, Huffington Post and Canada’s Globe and Mail newspaper.  Sue is passionate about families who have children with differences, coaching families to tell their own stories and nurturing gratitude and compassion in health care (and now education) settings.  She is also a partner in Bird Communications, a health communications company in Vancouver and Edmonton.  She can be found on Twitter and Facebook as @suerobinsyvr and her blog is suerobins.com.