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Welcome to Holland… a whole new canon

March 1, 2012

from - an amazing blog that is part of a whole new world of literature about families, friends, community and disability

So my day started like a “normal” day – I woke up, I went to see what baby Noah was doing today – what was interesting is that people were thanking his dad for making the page, and asking for more videos of him and other children, I did some laundry, I cleaned the house, I got ready to fly off tomorrow, I emailed and responded to email, and then out of the blue this brilliant mom sent me the most incredible, powerful, wonderful, gut-thumping article about the gifts her child contributes.   I kept trying to be all editorial and ending up sobbing.  Every time I read it I was amazed and in some form I hope it’ll be part of our new anthology, or maybe something else.   But it got me thinking about how writings like this didn’t exist not so long ago, and of how when we meet with people in our workshops they haven’t read them and they’re hungry for these ideas.

The word “canon” means, “an established principle: the canons of polite society,” or “A basis for judgment; a standard or criterion,” or “A group of literary works that are generally accepted as representing a field: ‘the durable canon of American short fiction’ (William Styron).”   All of these ideas are about a kind of congruence – different things that hang together and make sense of something larger.

An early part of the canon of supporting and including folks with disabilities in our families, networks, neighbourhoods, workplaces and communities is this well known story, “Welcome to Holland,” by Emily Perl Kingsley.  Written in 1987, I can still remember how great it was to read something written by a mom being a mom.  And I’ve just discovered this amazing version for our times, “Amsterdam International,” by Dana Nieder, from her wonderful blog, “Uncommon Sense.”   I think the “Credo for Support” by Norman Kunc and Emma Van der Klift is part of our canon (and I love this People First version).  Nothing is the same once you’ve heard or read these documents; one wonders not only why they aren’t part of how staff, teachers, professionals and everyone else is introduced to the idea of inclusion, but why they aren’t part of the larger body of what we know of as literature.  For me, they are right up there with the classics.

David Pitonyak’s “The Importance of Belonging” is another – after reading it can we walk back into our ordinary lives without our vision being changed?   Edited by John and Connie Lyle O’Brien, A Little Book About Person Centred Planning has, I think, the same effect – a few times I’ve been lucky enough to talk to students in classes who have this as a text book, who have been transformed by it and then go out on practicums and, when I get there they ask “What happened?”  What happened to all the marvellous ideas so humbly, clearly and nicely expressed in this book when the rubber hits the road?

What happens is, I think, that we can know we are looking at yesterday’s reality – people trying to catch up, and they will in the end because it’s a landslide of new and better ideas.  Despite whatever we are seeing, that vision of person centred thinking exists, in our minds and in the minds of others who have been changed.   Sometimes people need to be recalled to that vision, to those ideas, but essentially everyone wants to be part of what is expressed in that book: treat others as we want to be treated and approach each person as a person and here’s how, and here’s what to watch out for.   Now it’s one of three books, the latest of which is, I think, equally wonderful.  Edited by Carole Blessing and John O’Brien Conversations on Citizenship and Person-Centred Work continues the transforming impulse: here’s how, for each of us, for our agencies, for professionals, and here’s what to watch out for.

Michael Kendrick’s article “The Natural Authority of Families” has the same change-agent power: it just makes sense.  Part of what’s happening here is the creation of a new and better argument.   Part of what is being documented is what systems do to families and those who want to support people with disabilities, and how there are better and more authentic ways.  The question that families used to ask, “what’s the alternative?” is now being answered with authority on a daily basis.

I started thinking about this as I looked at this cool little article, “What To Teach Your Children About Special Needs,” by Ellen Seidman from her blog, “Babble Voices.”   Almost hourly, not least because of social media and the flow of information that we are part of creating, directing and responding to, we are surrounded by amazing new voices: why not ask some moms what they’d like from their children’s peers?   Almost every morning I tune into Noah’s Dad, a blog about baby Noah, who has Down Syndrome, and his parents.  If I get an update on my phone while I’m busy with soothing else it’s one of the few things that motivates me to stop, go to the page, and see what’s up.   You can like them on Facebook, you can connect with them on twitter, or you can read the blog.   Noah’s dad is a social media wizard using all his capacity to tell a new story in powerful ways.   And I’m pretty sure if you wanted to say something to Noah’s parents they’d respond, because when I shared their blog they came to my page and thanked me.   Are you kidding?  Thank me?  Thank you!

In the story of Noah’s birth there is a section that says “Let the heart stealing begin.”  Indeed.   On the Noah’s Dad Facebook page a few weeks ago the best thing happened: Noah’s dad said to all this readers, “hey why don’t you post some photos of your amazing kids too!”   And they did.  For about three days – they posted photos of children they were proud of.   Images of joy, success and love. My favourite was a little girl with Down Syndrome showing off a pumpkin pie she made.   All they ever needed was an invitation.

So here’s the cool thing I was thinking.   Instead of accidentally ending up in Amsterdam, it’s like I went to the airport and I asked for a ticket to Amsterdam because I love it there – I love the joy, humility, invitation and the apparent love.  I think these are things the big world needs.  Impatient with online video, I sit down and watch Noah learn to crawl.  I delight in the connectedness of all these children and proud parents.    These are things I need more of in my own life, in my workplace, in my parenting, in my relationships.   So, kids like Noah and parents like Dana and all those who can see to the heart of things are creating a new country, maybe called Amsterdam, and we can go there on purpose.   My partner, Gary, and I went there on purpose.  We just knew there was nothing “wrong” with it; we weren’t expecting there to be so much “right” with it.  We adopted a child with special needs who turned out to be completely and utterly different than anything in the itinerary of the professionals who helped us book that ticket: the Amsterdam we’ve ended up in is the best place ever.   We believe he’s just what the big world needs, too, and so are our all the foster children we’ve raised over the last dozen years.  And so are the kids in these photos shared by their rightfully proud parents.

On another note, Dana’s blog is up for the award for a special need parenting blog.  You can vote here for “Uncommon Sense.”  I’m sure the other blogs are amazing too, but this recent posting about how hard and yet necessary and rewarding for all to support as much independence as possible, and that posting about the Disney Princess stuff – they’re totally winners.   So vote if you get a chance.  And “friend” Noah’s Dad so you too can wake up to pictures of the most amazing, beautiful children.

What’s a book or article or picture that would be part of your canon?

3 Comments leave one →
  1. Ernie Baatz permalink*
    March 1, 2012 10:37 am

    A local mother blogs here about family and her daughter who is graduating this year:

    Robert Perske’s books with Martha Perske’s drawings would be one of my additions to the canon…

  2. June 14, 2013 4:12 pm

    I save all your blog posts because they are so rich in information – this is an old one but the links in here are fantastic!

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