Learning About Social Capital (While Being Social Near the Capitol)

Time is flying again. Today's the day I get another chance to be social with my new Partners in Policymaking friends in the capital city (in the shadow of the Capitol), where last month we learned about a simply capital concept -- applying the idea of social capital to our thinking about disabilities.

But first, I still haven't gone into detail about what Wisconsin Partners in Policymaking is. This is Wisconsin's first go at a program that's been around in other states for over 20 years: a leadership training for self-advocates and family members regarding public policy in developmental disabilities. There's a select group of thirty of us from across the state, with 10 self-advocates and 20 family members (mostly parents but a few sibs as well), meeting one weekend per month across six months. We're sponsored by the Wisconsin Board for People with Developmental Disabilities and several other organizations besides.

It's a power-packed group of folks, many of whom have already held various leadership positions and done great advocacy work on their own behalf and on behalf of their loved ones. The point now is to take it to the next level, and start to build a statewide grassroots advocacy network.

As with the LEND program I did two years ago, there's way too much to be able to share it all. I'm going to have to pick and choose what to pass along. From the January meeting, I've already referred to a couple of the readings in my last post.

So I'll just highlight the "social capital" presentation, because I think it's important.

Social capital has to do with the give-and-take, the mutual relationships between people that make society what it is. As a research concept, there are a couple of competing definitions. The World Bank definition, not surprisingly, refers to economic prosperity. Robert Putnam, of Bowling Alone fame, defined social capital as "features of social organization such as networks, norms, and social trust that facilitate coordination and cooperation for mutual benefit."

The point of the Partners presentation -- people with disabilities also have social capital, need social capital, can build social capital. Mutual relationships. People with disabilities aren't just the recipients; social capital is a back-and-forth thing.

I like this a whole lot better as a concept than the natural supports construct I wrote about from LEND a couple of years ago.

Not that "natural supports" isn't on to something important: it points out that all-too-often we focus way too much on the paid personnel who support and accompany people with disabilities, to the exclusion of the more natural web of support that a community provides. Extended family, classmates, neighbors, fellow church-members, there's a whole world of people out there who can provide support in a more natural, normal, it-takes-a-village-to-live-a-good-life kind of way.

The one thing that the concept of natural supports lacks (well, besides an immediately-understandable name) is the element of mutuality. The nomenclature tends to focus the attention on the caregivers/supporters rather than acknowledging that people with disabilities are participants in the relationships, just like people without disabilities.

So, social capital. Give-and-take relationships, a network to cultivate, a concept that applies to everybody, not just people with disabilities.

It strikes me that social capital also applies to some extent in paid relationships. I was on to that back in 2008, when I blogged about how I wanted our house to be a favorite place for the in-home therapists to come! Little gifts of produce from the garden, being organized and courteous and available, making sure the house wasn't too disgustingly grungy. Building social capital -- and we end up with employees who interact with us on a friendship level as well as professional, and remain in contact after the professional relationship ends.

For Joy, she doesn't know she's doing it, but she's been building social capital with smiles, with bye-bye waves, with hugs and requests for attention and just being willing to share her space. Someday I hope she'll do it via conversation -- maybe even blogging?

A few caveats: Autism has its own special layer of challenge when it comes to social capital -- the whole "social deficit" part of the equation, in all its many challenging aspects. I also have some hesitancy about the way "social capital" may tend to define as "poor" those who prefer a less-socially-interactive existence just in general.

Still, I think as a concept "social capital" does a whole lot better than "natural supports" in contributing to what it means to envision people with disabilities living lives of inclusion in mutually-supportive communities.

Back to blogging as social capital -- it occurs to me that a year ago I was doing much better at the give-and-take of social-capital building, the commenting back and forth on other blogs that led to such awesome blog-conversations here. So out of the social-capital loop am I at the moment, in fact, that I've failed to acknowledge receiving an award way back on my New Year's Satisfaction post, where Briane P over at Thinking the Lions bestowed upon me the Smart Cookie award:

Fortunately in this case I've left myself an out by my previous declaration way back in 2008 that I don't really "do" awards. Unless I feel like it. With this one I'm supposed to thank the giver (Thanks, Briane!), link back to him in my post (here ya go), list four little-known facts (oh well), and link to other Smart Cookies (I guess that would build social capital, eh? Oh well, again.)

Anyway, back to the Capitol environs for me, for another heapin' helping of Partners in Policymaking. Stay tuned!

Conference Report, Part 1: Paula Kluth

I almost feel like I should say "Didja miss me?" yet again. It's been a very full week since returning from the Autism Society of Wisconsin (ASW) conference a week ago Friday. Many spinning plates, and per usual many are Joy-related, from conversations about inclusion at church to the fact that we've got her IEP meeting this afternoon to plan for kindergarten in the fall.

But I promised some conference-reportage!

One lovely piece of convergence at the conference was that Joy's itinerant special-educator, who leads Joy's school district team and has been coordinating the IEP prep, attended the first few days of the conference as well. I'm loving the fact that the person with whom we're writing Joy's first ever official behavior plan... also attended the conference day-long workshop with Paula Kluth, a session called The Problem with "Behavior Problems:" Supporting Students with Autism & Other Disabilities. [Note - I'll be calling her by her first name, as I did with Temple Grandin and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]

Paula put "Behavior Problems" in quotes in her title on purpose. It seems that throughout her career around these issues, she's been wanting to write and speak about the "supporting" emphasis while publishers (and conference producers?) bring the pressure to use language that explicitly references "behavior." Which makes sense with the generally-used language -- Joy's going to have a "behavior" plan and all that -- but I love the move to change the conversation.

One way in which the workshop enabled that conversational change was to challenge the attendees to do some self-reflection. For example, one set of questions that we discussed in small groups was "When do you behave badly? What helps you "recover" from your own bad behavior? What is one effective and positive behavior strategy that you have used?" I bet that nobody had trouble coming up with personal examples; I know I didn't. Attendees reported behaving badly when they're hungry, tired, offended, stressed, overwhelmed, when people won't listen, when they're having a hot flash!

Then Paula asked these questions around effective strategies: Did anybody say, "I can't calm down until...

• someone drags me away?
  
• someone enforces an immediate negative consequence?
  
• someone yells at me enough?

So why is this the kind of strategy that so often comes into play for students with disabilities? when what really helps the conference attendees in their own "behavior problems" is more along the lines of: have a snack; change of venue; exercise; walk away; etc?

Really, who among us wants someone to come along and try to "change our behavior" anyway??

But we can all use a little helpfulness and support along the way. The reframed question, as the presentation put it, becomes "How can we effectively and sensitively support individuals with disabilities?" or more broadly, "How can we be helpful to people?"

So, what does seem to help? In very broad strokes:

• Being surrounded by people who care
  
• having meaningful social relationships
  
• being in a comfortable setting
  
• having an engaging curriculum (driven by novelty and joy, as opposed to "death by sight-words")

Another nugget from the day that I found very thought-provoking was reflection on "shepherds," i.e. how very much adult-presence and "proximal support" students with autism often have. How much of the hovering and correction -- y'know, those things we do because it's good for them, right? -- is necessary and how much not? Do we expect students with disabilities to be "on task" for more of the time than students without disabilities?

Well. The workshop was chock-full of anecdotes and suggestions and excellent ideas for providing appropriate support through environment and materials and relationship-building. It was actually so much as to be an overload, and if I try to reflect much of that back in bloggy format, I'll just be transferring that overload. It struck me as the kind of thing where, once you've got the right framework in your consciousness, there were almost enough ideas to be presented in a "strategy of the day" daily calendar format!

For me, what was truly important about the workshop was the framing -- the commonalities -- the sense that it's really all about being human and how we all react.

Here's a quote that didn't come from the presentation, but rather from a favorite album of mine when I was a kid, Free to Be You and Me:

Some kind of help is the kind of help
That helping's all about
And some kind of help is the kind of help
We all can do without!

For more information:
http://www.paulakluth.com/
including one particularly helpful page on being calm in crisis
The article is adapted from her book You're Going to Love This Kid: Teaching Students with Autism in Inclusive Classrooms.

Our Choice of Frame

Another seminar-Friday has gone by for the LEND program, so of course my brain is full once more.

One of yesterday's seminar topics involved delivering developmental screening results to parents, when the screen had turned up some areas of concern that needed a more thorough assessment.

The angle that was echoing in my mind:
What if that screen were an autism screen, and the family's image of autism had been informed by THIS:



This celebrity-directed video (Alfonso Cuarón, of Harry Potter and the Prisoner of Azkaban fame) was released by Autism Speaks on September 22, in an attempt to raise autism awareness. As Autism Speaks co-founder Suzanne Wright put it, "We will all help shine a bright spotlight on autism."

I find nothing bright about this video. It portrays autism, as exemplified in images of people (mostly children) with autism, as a relentless monster that will inevitably destroy the lives of the families of those in its clutches, unless those families devote every waking moment to its defeat.

A sample from the transcript:

I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late...

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain...

I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.

The second half of the video portrays families surrounding their children and vowing to defeat autism, for example, "We will spend every waking hour trying to weaken you."

I know that this reflects the feelings of a sizeable group of parents.

Let me say very clearly (in case you don't already know something of us and our experiences with Joy):

We do not live in this fearful, desperate frame. And we do not believe that this is all there is to look forward to!

Joy's challenges are substantial enough that we could have chosen a path of fear and anger and blame. She does not speak. She is not toilet-trained, and would play with her feces if we did not keep her wearing onesies. She does a lot of protesting these days, and grabbing, and throwing. She needs a constant watchful eye.

But.

Our marriage is strong. We have the money we need, though we have never been wealthy and times are of course tight. We generally get the sleep we need too. We laugh much, much more than we cry. Joy goes to daycare, to church, to the zoo, to restaurants, camping, swimming, and much much more.

And meanwhile, she is learning, growing, smiling, kissing, and enriching our lives so very, very much.

We enable this richness through our choice of frame, our choice of how we will view Joy and her uniqueness and her strengths as well as her challenges.

How much harder it would be to make the positive choice if all we heard were the messages of the tenor of the "I Am Autism" video!

One of the suggestions that was conveyed during the seminar presentation, for all the future leaders in developmental disabiities who were present, was this (not an exact quote but the basic idea):

Remind parents, whether you're delivering a concerning screening result or talking about an actual diagnosis, that their child is still the same person that he or she was yesterday. All the things you love about your child, everything that was wonderful about your child yesterday, is still true today.

I'll leave you with a link to a different recently-published resource, this one from the Natural Supports Project that I blogged about earlier.

It's a booklet published at the beginning of 2009, called The CORE of a Good Life: Guided Conversations with Parents on Raising Young Children with Disabilities. The link goes to a page about natural supports in early childhood, where you can find a futher link to the actual 62-page PDF document (which is over 33Mb in size, just so ya know). It's aimed at both providers and parents, to guide conversations that explore what is important to families around ordinary experiences and relationships, beyond therapy and treatments. The approach is designed across developmental disabilities.

CORE stands for:
- Community connections and participation
- Opportunities to explore and pursue our interests
- Reciprocity in our relationships
- Enjoyment in our lives
Here's how the guide starts:

We begin here, in the early years, to empower parents to create a vision for their child's life and explore opportunities in the community that begin to build that vision.

The strategy is called Guided Conversations, described in the book thusly:

Guided Conversations are an invitation to think about;
- How to talk about children and influence how others perceive them;
- How parents identify the ordinary experiences of being a family; and
- How parents sort through the relationships that may be available to them and their child that they have not yet considered.

How to talk about our children and influence how others perceive them.

I submit that the proper use of the Autism Speaks video is as Exhibit A about how NOT to talk about our children. 'Nuff said. Let's move forward.

And the next move in this household is that we have to make a grocery list so we can take our daughters shopping, and then if the weather holds, get ourselves organized for the church campout tonight. Yes, that would include Joy. Of course.