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The Four Commitments | Part 2: First Commitment - Discovering Your Community's Gifts

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08/22/2022

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Episode Description

This the 2nd of a six-part series.  Link to Part 1.  Links to subsequent parts will be updated as they are released.

Within two years of “saying yes” to doing a Family Project with Starfire, Carol had: 

  • Launched a monthly “Sew & Play” event in her community’s park where she and local kids learned sewing from a neighbor.  They collaborated to make a community quilt!

  • Joined the citywide association of neighborhood leaders who were working on ways to improve life for all people in her community.

  • Organized a neighborhood Christmas caroling event, complete with hot chocolate and candy canes.

  • Hosted a group of neighbors celebrating “Dio de Los Muertos.”

Click to watch video of Carol’s Family Project

And those were just the big splashy events!  Behind the scenes, she was having coffee with neighbors, meeting new people she’d never talked to, and, more importantly, reinventing her and her family’s role in her community.

I was blown away by it all.

We were reflecting one day with some other families who had done a project with Starfire, and Carol shared one of her biggest outcomes:

“We’re no longer the ‘family with the disabled child,’” she said.  “We’re the ‘family that does cool stuff.’  People want to know us.  They want to be around us.”

All of us in that conversation had to agree.  By taking some fun, interesting action in their neighborhoods, each family, including Carol’s, had transformed peoples’ perceptions of them as a family, and then, each individual member.

But more importantly, it changed how they saw themselves and each other.  That family became teammates, central in their neighborhood, connected to an expanding network of people who cared for and shared the same little corner of the world.

For years, they had been told a troubling story about what “disability” was and wasn’t.  Parents had been told that story even when they themselves were children, witnessing who was and wasn’t in their classrooms or on their sports teams or invited to hang out on Friday nights.  Then when their child with a disability was born, that narrative was reinforced by all the therapies and services….And by the growing lack of ordinary, everyday people in their child’s life.

They were in danger of having bought the story.

But with these projects, they were seeing a way out of that as their only story.

It’s not that we didn’t want to discuss disability as an aspect of someone’s identity, or even celebrate differences. 

But in our work at Starfire, we found that investing in the disability story was just….

…well…

…boring.

It was being done everywhere, all the time, by everyone else.  And there just wasn’t much energy being put into other potential aspects of peoples’ identities.  So we decided to put all our efforts on the side of helping people find their gifts, discover what new identities could emerge for them, and looking to meet up with other people who shared that in common.

I once heard John O’Brien describe identity as a disco ball.  We often think we are just a singular person with a single story, encompassed completely in who we consider ourselves to be.  But in reality, he explained, we have many different aspects of our identity.  We are different with our parents than we are with our siblings.  We are different with our neighbors than we are with our lovers.  We are different with our colleagues than we are with our best friends from high school.  Each new connection offers a chance to grow a new part of our identity.  So the surfaces of the “disco ball of our identity” reflect the people we meet and come to know.  They grow and fade, both in quantity and quality, with each additional connection.  We have so many unique stories within ourselves, just waiting to be discovered, lived and told.

We aspired to more identities, and not just more, but more beyond the assumptions and limitations “disability” imposed upon our perceptions of ourselves and others.

Making this commitment to look for strengths and gifts asked a lot of the families who worked on a Starfire project.  Oftentimes, they themselves were so invested in the mindsets and culture of the disability identity around their child, they couldn’t even imagine anything else. 

One mother, Achsah Fitzhugh, came to understand how dominant her son’s disability was in their life after she hosted a series of events in her community.  She began to see her new parts of her son’s identity emerging and expressed how powerful that was for them. 

“I can’t believe how long autism was in the driver’s seat of my son’s life,” she told a group of families.  “He’s got so much more to offer the world, and that’s the big story now.  Autism is still along for the ride, but we’ve put it in the trunk.”

It was a vivid and powerful image for us.

Sara Vank was another parent who started creating projects in her neighborhood with Starfire.  In reflecting back on how much her community project meant to her and her family, she talked about her mindset before making a commitment to discovering the gifts of her daughter. 

“Before this project, I felt like my daughter was a diagnosis.  Like I had given birth to a syndrome.  But now I know she has her own identity as she is, and she is so much more than that label.”

Sara then introduced a metaphor that continues to inspire us.

“My daughter’s gifts act as a sort of ‘humanity anchor,’” she said.  “They counteract the dehumanizing effect of the disability label.  They help people find ways to connect with her, personally, human to human. And we all need more of that.”

Click to watch Sara Vank’s story.

That showed us the power of the label of disability to crowd out any other possibilities. And the transformational power of these new identities the families discovered as they worked, like Carol did, to find “more” beyond disability.

They did have to give up the easy explanation, though.  People initially thought their projects were about helping people with disabilities find each other.  Many of the families had to respectfully decline offers to connect them with disability non-profits and support groups.

There’s a comfort to old mindsets.  The structure of the world has people with disabilities in familiar, albeit unhelpful, roles.  “They” are the people “we” help through our charity events and fundraisers. “They” are peers of each other, but not of “us.”

Breaking out of that takes courage.  It’s risky and unfamiliar territory.

That’s why the families had to make a commitment to do it.

When families lived up to their commitment to focus on gifts, they reported feeling like they gained  new identities, not only for their child, but for themselves and their entire family….And even for their community and neighborhood.  People were more connected, less isolated, and over time, developed their connections into relationships that were important to them. 

I have a friend with a disability who wrote a helpful piece touching on the “privilege of reciprocity.”   We, as nondisabled people, are expected to contribute our gifts: to others, to our family, to our community, to an employer.  But collectively, we as a society are pretty inexperienced at making space for people who we perceive as having no gifts to offer.

This has devastating consequences.  I once listened as a Doctor of Behavioral Psychology offered that helping people with intellectual disabilities find and develop relationships was a waste of time because “they can’t give back to the relationship.”  I offered dozens of ways people reciprocate in relationships that he had never considered, but it told me more about another deep and troubling mindset we must work to change. 

The problem isn’t with the gift, nor the giver.  The problem is that potential receivers have been told a single story about disability, and that story rarely includes the value of peoples’ gifts. 

So we’ve got to show them a new story. That’s the power of the family projects and the openings they create.  Uniquely tailored to each person and family and the people around them.

A gift cannot be given unless it is also received, so we have to help create opportunities for receptions. 

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