Friday, August 23, 2013

Link to Trailer and info about a new movie called ANY DAY NOW featuring a boy with Down syndrome and his adoptive parents, set in 1970s NY.

Thursday, August 22, 2013

Reflections on theology and disability

The following represents a collation of several brief reflections on theology and disability, occasioned by Sharon's studies in the Seattle Pacific Seminary's MA in Theology, and a discussion on SPU's "Facnet" listserv in response to a video about an alumnus with disabilities. It is by no means systematic or comprehensive, but it does capture my current imperfect wrestling with these topics.

When we refer to people with disabilities as “people first,” we do not intend a blind, neutralizing attitude which pretends there are no real differences. On the contrary, we cannot help but see, acknowledge, and celebrate the various kinds of difference represented across God’s creation. But I believe we must include various kinds of ability and disability (both physical and intellectual) as part of this range of diversity, all considered under God’s description, “very good.”

I am not sure that being born without arms, or blind, or with a cognitive disability, represents “brokenness” from God’s perspective. We are all broken in different ways, and our spiritual need for relationship is primary. I don’t think we can judge what God’s perspective is on whether physical “wholeness” is a model to which we all must aspire. I do agree that our theology has tended to make this assumption, leaving much of society--and the church--with the sense that someone with a physical or intellectual disability is somehow further from God’s ideal than those who are “normal.”

What was lost in the fall was not necessarily physical perfection, but perfect relationship. God saw that it was not good for Adam to be alone, and created him in relationship. Eating of the tree of the knowledge of good and evil damaged their relationship with God: because they chose not to value and preserve the relationship by following God's instructions. This requires some degree of cognition, to be sure, but prioritizes relationship rather than individualism. In some sense, might we not consider the "knowledge of good and evil" a sense of prioritizing individual preference over our relationships to those with whom we are in community?

"Knowledge" here is not intellectual assent, but deep personal relationship. This is something that anyone, of any cognitive level, is capable of. And while not all human beings are equipped to exercise choice in the same ways, creating openings for choice by everyone IS central to the human experience. This has to mean EVERYONE, if choice is central to our identity and dignity as human beings. That means we must go further than the “we-them” dichotomy set up by well-meaning, caring people: WE just want to help THEM, to fix THEM, to care for THEM. Enduring programs such as the L’Arche communities across the world (including here in Seattle) challenge this idea with the insistence that we all minister with and to one another, and there is no “care-giver/care-receiver” power contrast; it is all about relationship.

The value of individual persons and the centrality of relationships are essential to the messy ways we live out our faith. While we may differ over God’s definition of “very good” from a physical or intellectual standpoint, ultimately we can’t answer those questions, and what matters is our behavior toward and with all of the different kinds of “others” we encounter and learn from every day.

I believe that we need to imagine and work toward a society which does not value persons based upon their “wholeness” or “capacity” or “contribution,” but on who they are, in all the messy complexity that entails. Seeing people with what society labels "disabilties" live their lives as who they are on their own terms inspires me in that particular way, and I worry that sometimes we may read that inspiration more in terms of “if they can overcome that, what do I have to complain about?” which edges us toward the idea that challenging experiences, and particularly those which are dramatically “overcome,” exist for the rest of us to learn something. I just can’t accept that God created any of us simply as “inspiration” for other people. And I can’t accept the potential implication, that those who do not “overcome” similar challenges are somehow less significant.

A few of many potential resources on these topics:

David Watson's blog

David is a professor at United Theological Seminary in Dayton, Ohio, and the father of a child with Down syndrome.
Two recent posts particularly stand out:

Dave Hingsburger's blog

Dave is an advocate for people with intellectual disabilities, an internationally-known author and speaker, and a Canadian blogger who himself has a physical disability. His daily posts are honest, generous, and insightful.

Thomas Reynolds' Book

Tom Reynolds teaches theology at the University of Toronto, and also is the parent of a child with a disability.
His book, VULNERABLE COMMUNION, offers a perspective on theology from the shared human experience of vulnerability.

Wednesday, March 20, 2013

Ryder Family Fun: A New Normal

Ryder Family Fun: A New Normal: I saw this banner on the wall at a Seattle high school, by activist Ann Northrop. I think it applies to every kind of "difference."

Saturday, January 31, 2009

"I want to be...a dentist!"

If you don't recognize it, that's a slightly-paraphrased quote from "Rudolph the Red-Nosed Reindeer," spoken by the reluctant elf, Herbie. And it introduces this thought about movies and other stories with "different" people of all kinds as their main characters. (Not original to me, but I've been thinking a lot about it lately.) Have you noticed that these characters only become "heroes" or "inspiring" when they are able to transcend their "difference" and "fit in"? One obvious example from the holiday season just past is Rudolph, of course--he (and Herbie, and the "Bumble," and the "misfit toys") only is valued when his "difference" is needed by the "regular" group. He is never valued for the "red nose" itself. But there seem to be an endless stream of examples. Recently I watched "Air Bud" with James. Not a great movie, but again, a kid who's new in town, with no friends, depressed b/c his dad recently died. Does he become part of the group because someone reaches out to him where he is? No, he practices basketball alone behind an abandoned church, befriended by a golden retriever with a gift for hoops (crazy, no?), and becomes good enough that the local team needs his skills. Think "Rain Man," "Forrest Gump," etc., etc.

I don't mean to take anything away from the message that you need to take responsibility for your own happiness. But very rarely do you see a story with a character who is different and the OTHER characters learn to accept her or him as just as "regular" as they are. And it seems problematic to me because these are often movies that are supposedly examples of the success of people who are not "normal," when really they just reinforce the existence of lines between "normal" and "not," instead of broadening the definition or doing away with "normal" all together. (I'd be happy to be enlightened with examples to the contrary.)

I guess I'm extra sensitive about this because we're heading into the "re-evaluation" and "IEP" phase in the middle of James' kindergarten year, and hearing statistics about where he is relative to the "normal" kids, and what kinds of "support" he needs to be successful. Everyone wants to help out, but very rarely is there a sense that schools and communities should adapt themselves to integrate and include the beautiful range of abilities and experiences around them. Rather, we have "individualized" plans which keep kids who are different in a different room, on a different bus, on a different schedule, which (it seems to me) reinforces their idea and experience of "difference" even when it's phrased as "special." More dangerously, it reinforces the sense of difference for the "normal" kids, who are "spared" the experience of interacting regularly and on a human level (you know, like eating, or playing?) with kids who have autism, or visual impairments, or hearing challenges, or Down syndrome, or physical variations from the "norm."

What we have determined this week, having received the interim report on some psych testing James did at the University of Washington, as well as kicking off his "re-eval" phase at school, is that we absolutely are and have to be in the driver's seat on all of this, being clear with everyone involved what we expect and hope for James, no matter what the statistics say. And while it would be great to be back in birth-to-3 services where there was someone who led us through each part and took as much care of us as they did of James, that isn't going to happen anymore. We need help, and we need to find it where we can: in the encouragement of the psychologists at UW to find more activities for James with "typically-developing"--what an obnoxious phrase--children; in the people at church who are willing to treat him as a child first and a "special-needs child"--another obnoxious phrase--second; in the teachers and therapists at school who really do want what's best for him, but also are overloaded; in the friends who are willing to babysit once in awhile to keep our fragile schedule together; in the training sessions and books which attempt to encourage and assist parents of children with various challenges.

And to wrap it up, here's what we've found. Given the suggestion that James responded well in his psych testing to "deferred gratification" (i.e., "you can have your pom pom when you finish going potty") we have been trying more of that this week. While it is almost as exhausting as pushing to get him to do the current thing just by repetition, it seems to work over half the time. So it was a pretty good week. And we heard from all of his teachers and therapists that despite behavioral challenges, he is making progress in speech, balance, academics, etc. And today after dance class, the teacher said he had a great session, and that after just 3 classes, he really knows and follows the routine and stays focused for about 40 of the 50 minutes (after that he's just tired). We also found out that they do birthday parties at the dance studio, which got him very excited. We'll see what happens with that.

This has gotten much longer than I intended, but since it may be another few months before I post, I guess that's ok. And tomorrow's a new month. Happy February, everybody!

Tuesday, November 25, 2008


Sharon took the boys to see Santa today--they were very excited and apparently very well-behaved. I'll get the picture posted here once I get it scanned.

James, as always, is excited for Christmas. For the past few weeks he's kept saying, "Santa...MY turn," especially when he sees Santa on a TV commercial.

He's even more excited to get to watch his favorite movie, "Elmo Saves Christmas." It's only available to him between Thanksgiving and New Year's, but that means just a couple more days until we get it out again, and he can't wait.

Two things on Braden today: at his daycare he pooped on the potty--very exciting! And when we got home, he said, "I miss Ashley" (his day care provider) and "I want to go back to Ashley's house. I love everyone there." Pretty cute.

All for now.

Monday, October 20, 2008

Kids are Amazing

Nothing earth-shattering tonight, just the observation that kids are amazing. These two little boys have so much energy, and so much love, and are so giving (when they want to be).

Tonight they each drew pictures of the other with the MagnaDoodle. James was especially excited to add lots and lots of hair. Then they were dancing to swing music, which quickly turned into wrestling. So we read books (including "Love You Forever," which always has me in tears) and they fell asleep. Not a bad way to end the day, even with the frustrations and struggles to get jammies on and everyone settled.

God is good.

Friday, October 17, 2008

So why Merry Christmas?

OK, so maybe the title of this blog needs some explanation. James loves Christmas (specifically, the Sesame Street movie "Elmo Saves Christmas") more than just about anything else. And when he's really happy, and we're congratulating him on something, after the high fives, hugs, or whatever, he will often say and sign, "Thank you, Daddy!" then "I love you Daddy!" and "Merry Christmas" (or something closer to "Merry MissMuss," but we know what he means). It's something that just melts your heart.