“I hope, wherever you come from, there is someone who holds your story. Someone who remembers you when you were knee high to a grasshopper.” –David Pitonyak

Being known is critical to our well-being, says author and one of the best diversity thinkers, David Pitonyak.

Tim Vogt, Starfire Learning Network Coordinator, recently shared his thoughts on Pitonyak’s piece, “Who Holds Your Story” on Facebook, and it’s here for posterity!

Tim Vogt, Starfire Learning Network Coordinator

“Over the past four years, I’ve met with dozens of families of people with disabilities.  I have given each of those families this article. 

Usually, it’s the first thing I give them.

It’s just so important.  It’s funny, it’s poignant, and it asks powerful questions with important ideas.  The icing on the cake is an attached bit of thinking from Jack Pealer and Sandy Landis, which I think inspired the article.

I’ve been able to learn from David Pitonyak a few times, and am grateful for it.  In particular, he first blew my mind with his “7 Questions” and framing “behaviors” as ways for communicating unmet needs. Such an important point of empathy that I was never taught.

Overall, this article is about helping people explore, name and reclaim their story.  Knowing a bit about the author, and Jack Pealer and Sandy Landis, I’m guessing its original intent was to help people with disabilities who were institutionalized and had their story lost.

For me, it’s also a cautionary tale of what might happen if we allow institutional stories to creep in, and/or we neglect building strong personal stories of connection and community participation.  That’s why I think parents of young children with disabilities might find this a critical read.  They are the single most important predictor, in my opinion, of a person’s trajectory into an inclusive life story, or a segregated life story.

Of course, it’s also critical that people in the field read it….And then think about ways they can catalyze better stories and avoid the institutional stories…

And lastly, I always wish neighbors and friends of people with disabilities could read things like this.  They might see themselves in the role of “Maria,” building lifelong memories and friendships…Or in the role of the sisters or the town policeman:  helping craft connected stories with people with disabilities and their families is such an important action any of us can take in our daily lives.

So, take a moment to read the “Who Holds Your Story” PDF below, and check out the author’s pages. All, I promise, are worth some clicks.”

Resources

• Who Holds Your Story: http://dimagine.com/wp-content/uploads/2018/03/WhoHoldsYourStory.pdf

• www.dimagine.com

• http://dimagine.com/seven-questions/

Never did I imagine that the words: “Carol, you have permission to put Grayson’s disability on the back-burner” would be such a life changer, and not just for Grayson but for me, Briella, Charlie…our entire family, but here we are.  Along the way we (as a family) discovered so much about our own gifts and passions, and because we discovered all these cool things about each other and those around us, we began finding ways to share those gifts not just with each other but in our community.  And we have done some pretty cool things and met some really cool people.  But I won’t lie, it’s a process and it did not happen overnight. 

It was not easy at all, taking that first step towards meeting new people in our community, but for us as a family it was vital in making a good life for Grayson.  It is fun to think about the fact that when I first met Tim (my mentor/colleague, who introduced me to the concept of building community), I pushed back and more or less tried to call BS. But well, if you haven’t caught it yet, I lost that pushback and here I am - an irrationally passionate about all things family, community connections, and John McKnight-related, kinda person. 

One of the gifts I discovered along the way was my ability to see different perspectives, and because I am a people person I am always up for good conversation!  So, as I shift gears here, I want to share a quote from a mother and Starfire Board member, said during a conversation we were having around the vision of building the most inclusive world possible. This quote really inspired this moment of reflection for me…

“It may not happen worldwide in your lifetime Carol but it’s certainly happening now in Hamilton, and y’all did that.” 

~Kathleen Cail

This ah-ha came on top of the last two “Wednesday Walks” in my neighborhood, where I had been sharing bits and pieces of my work and family story with Byran, a fellow neighbor.  If you know me, you know that I could talk about family, community, and connections all day long… it’s that irrational passion I mentioned. 

Anyway, it got me thinking, that first step towards something a little more…a brave step towards meeting a neighbor or someone new in your community can be hard…scary in fact, and sometimes people just aren’t sure where to begin.  Sometimes, people don’t recognize that what they are doing actually is building a more inclusive community, helping others lead a good life, and helping them have a sense of belonging. 

I was posed with the question a few weeks ago, “What can I do, Carol, as a citizen?” The short answer, and for me the most important is: get to know your neighbors, get to know people in your community.  The long answer is a fun little list of ideas with some amazing people/stories behind them, this list is a tip of my hat to those amazing people and are just some fun things to get you thinking about what you (and your family) can do to start meeting new people in your neighborhood/community.

Here is that list!

·       Walk around your neighborhood…smile, nod, wave, say hello, or simply walk…become a regular

·       Visit the local shops- even window shopping can lead to meeting new people!

·       Walk around the “town square” and notice the history.  Does your town have flood markers? Time capsule? Any cool legends?

·       Compliment someone on their yard, their flowers, yard decorations

·       Share sidewalk chalk with friends, neighbors, people who pass by

·       Share your sidewalk chalk art with others- decorate random squares around your neighborhood

·       Connect with the local neighborhood/community volunteer group if your community has one- find and connect with people who are working to make their community a better place

·       Organize something fun…front yard splash party, bubble party, porch concerts, truck concerts

·       Learn a new skill at the park, invite others to join

·       Paint rocks with someone and hide them around town

·       Bring up your neighbor’s trash cans…this can be so helpful sometimes

·       Hold a monthly bonfire in your driveway…invite neighbors

·       Make a talking piece in your yard…a fairy garden, vegetable garden in the front, wildflowers- conversations starters lead to great things. 

·       Gather neighbors and start a community garden

·       Hold a monthly potluck

·       Share vegetables, goodies, things like that

·       Pick up the trash around your street, block, or go even bigger with the neighborhood- ask people to join you

·       Find ways to share your gifts, art, music, fixing things, technology

·       Connect with others who share your passion: birds, games, art, history, plants…community is not just limited to physical space

·       Learn something new from someone you know

·       Teach someone you know something new

·        Have virtual coffee- with a friend, an acquaintance, someone you just met

·        Listen to a local storyteller/musician

·       Tell a story to your family, a friend, or over zoom with a group of friends

·        Take a walk with someone

·       Share flowers/plants

·       ___________________your idea here

First steps are scary, but if I have learned anything over the last three years, it is that we are better together.  COVID-19 has certainly thrown us all for a loop, but it has not changed the fact that we need one another. 

While everything in our world is telling us to lean out rather than lean in, I challenge each of you to think about ways you can lean in, maybe meet someone new, or discover your gift, maybe it’s simply dreaming about what you and your family will do when we reemerge from this, or maybe, just maybe something inspired you from this list. 

Sure, maybe movie night in the park may not be something we can safely do right now, but we certainly can plan for when it is safe.  Maybe potlucks are out but, what you could do is swap recipes with neighbors or try new dishes with your family for when potlucks are back in. 

I dream of a world that is inclusive, a world where everyone is seen for their gifts and abilities not labels and what is “wrong.”  I truly believe we are on the right track, each day I meet new people who share this vision with me, and what I have noticed more and more is it’s not just families that have loved ones with disabilities working to build connections, its people all over, from all backgrounds working to build connections and grow a good life, keep doing this friends and keep doing great things!

2014:
 “What happened to Annie?”  I asked her, my feet still in the street, car door swung open.  I interrupted the walk they were trying to take before darkness overtook the sky.

“She died.”  Like being asked cream or sugar for one’s coffee, without hesitation or a hint of melancholy, she answered quickly.  The nonchalant response was disconcerting.

“I know that…” I trailed off, my eyes fixed on the For Sale sign in our yard, embarrassed that I wanted to know the specific details.  “I mean, what happened to her?”

Annie was my neighbor.  We borrowed her lawnmower one summer when the one we had finally died.  The rubber primer rotted to dry dusty pieces and the motor gave in to our negligence.  We hadn’t properly cared for it the last winter, tucking it haphazardly under the deck, leaving it exposed between wooden beams. 

When we also didn’t have gas in our garage and had to walk back across the street to use hers too, we offered twenty bucks.  I expected she wouldn’t accept it, after all it was an ‘it’s-the-thought-that-counts-gesture’, that neighbors do, but she did.  She took the $20 in exchange for what she insisted would be “unlimited mower use forever.” 

The next day I found a card in my mailbox from her with a coupon to Chipotle for buy one get one burritos.  She was funny like that.

When she wasn’t in her yard, I didn’t think much of it.  It was getting colder and an early snow had cancelled schools and caused delays early in November.  By the time I noticed, she had already been dead for 12 days.

Some weeks she was frenetic, picking clover and crabgrass out of her lawn and edging her sidewalk til thick stripes of soil framed the grass and bare spots dotted the lawn.

Other times, she’d be canvassing the street collecting trash with a plastic grocery bag and cordless phone in her hand, like she was awaiting an important call. 

But mostly, she was peculiar, peeking through her front window and quickly disappearing behind a curtain when I’d catch her looking.  At night, from my bedroom window, I’d see her standing in the corner of the shades, looking out.

Never raising her eyes from the dog she had tethered to the leash Sandy, my next door neighbor answered me.  “They thought suicide, but I think that’s unlikely.  She was real close to her family.  Probably was drugs.  She was on a lot of different meds.” 

I came home once to find a rosary enclosed in a gift bag tucked inside my screen door.  The note explained the rosary was blessed by Pope John Paul II on a trip she made to Italy years ago and she wanted my newborn daughter to have it so we could remember her when we moved.  A week later she was found dead in her home.  Sandy said she had been there at least three or four days before anyone found her.

Sandy’s dog pulled on the leash, signaling her intent to continue walking.  Her son tugged on his mother’s coat with his gloved hand.

“What are they gonna do with the house?”  he asked, bundled in a puffy blue coat and scarf.  A few wisps of snow had started to fall as we stood there.

The electricity was shut off and the house was nearly invisible at night, a silhouette lighted only by a streetlamp some doors down.  Fake candles in the window gave the impression that someone might have still lived there.  The batteries died about a week after they were put up and all that remained before we moved was the dark vacant skeleton of a home.  I looked out my bedroom window at night, holding my newborn daughter, and squinted my eyes, expecting to see the curtain move.

2019
We moved in 2015.  A bigger house a few blocks away. Same neighborhood, different neighbors.

Our first dinner together in 2016 was meatloaf.  The classic kind that German-descendants make around here with onions and ketchup and baked beef or pork smashed into a bread pan. There were garlic potatoes and white bread with butter and a little fold out table set in the middle of their dining room. It was familiar, like stepping back in time and eating dinner with our own grandmothers.

Todd pulled out his portfolio of drawings, pencil and charcoal sketches of landscapes, trains, Cincinnati landmarks, his children “Danny when he was 4”, his wife “this one here is Lydia in her wedding gown 1968.”  Lydia’s eyes met Todd’s across the folded table, and they smiled at each other.

Todd and Lydia had lived there for decades before we moved in. Todd, an older man who used a wheelchair, was a porch sitter, overlooking our street below. A nod became a wave, a wave became a “you got a minute?” and from there my children we were picking strawberries from their backyard, giving gifts of dandelion bouquets, and coloring pictures for them. Lydia watchfully eyeing the kids scootering back and forth down the sidewalk of our busy street, yelling from time to time to slow down!, get down!, or turn around!

They had grandkids of their own, at least 7 with more on the way, but it didn’t stop them from bringing back gifts from their vacations for mine – a collection of Disney characters once, coloring books another time.  A jumbo bucket of sidewalk chalk another.

When Annie died in 2014, we had no idea.  It was twelve days before we noticed.
When Todd died, we mourned. We saw the flashing lights, the fire truck, the coroner.

We walked next door the next day, and hugged Lydia on her porch. We bought a plant, wrote a card, and checked in on her weekly, invited her over for dinner, for a drink, even though we knew she didn’t drink at her age.  She declined, graciously, a widow in mourning at her own pace.

Our family room window upstairs looks down into Lydia’s living room below. Some nights, when her son Danny visits, my son, Rowan will see them, his striking resemblance to his father and say “Look Mama! Todd didn’t die!  He’s back.”

We talk about how everyone, eventually will die. And that no, Todd isn’t back.  We talk about our sweet neighbor Todd and how he used to watch the bees and get our mail the summer the mailman refused to walk past our hive. 

And then, we text Lydia and ask if she wants some left-over cake, needs anything from the store.

“His world has been so small.  He doesn’t see.  He doesn’t hear.  He doesn’t speak.”

We sat in our small group, listening.  The struggle she described was very different than the reflections others had shared around making introductions at a local sewing circle, or how to help someone remember a friends birthday coming up, how to collect more donations for the Humane Society and grow the project to include more people.

Bonnie was at a loss. 

She really didn’t know what might interest Ted.  He couldn’t tell her. He couldn’t hear what she might be suggesting. He’d had no spikes of achievement in his life to her knowledge, no big momentous occasions to celebrate over his 50 years of life, no celebrations that she was aware that might give her some ideas, a clue into what he might enjoy, no hobbies unique to him that anyone had ever mentioned in meetings or MyPlans.

Mostly, Bonnie said, she wasn’t sure where to even begin.

The group was quiet.  Reflecting on the depth of work that might be required to begin to explore what might make sense for Ted, what goodness the two of them could work on together if Ted himself couldn’t tell her.

Instead of suggesting ideas, we simply held the space that Ted was worthy of a good life.  And any small nudge in that direction in itself would be good. 

Just begin, the group agreed. Explore.  If Ted hadn’t had any experiences, the world of experiences was new and open to him – and wasn’t that an exciting problem to have?

Bonnie left the meeting with a bit more encouragement.  Knowing, that whatever small step was next for her and Ted, was worth doing.  That there was a worth in small things – going to one new place, meeting one new person, exploring one new hobby, having one day to start thinking on what a good life might look like.  And knowing that a good life, starts with doing one small thing at a time.

“She’s like a totally different person when she’s not in the group.” She remarked. “You know, she’s actually smart, and kinda funny. Not at all like when she’s driving me nuts on the workshop floor.”

For six months in 2019, Starfire’s team facilitated learning session with another Ohio organization.  Our aim was to help provide a vision and tactical steps to work their way out of a day program and sheltered workshop more frequently, to provide more individualized supports, and to launch a mini project in partnership with a person with a disability in the community. Our sessions were part brainstorm and part affirmation that this was new and difficult work to start to think of our roles outside of structured 9-3 program models.  The conversation shifted to be about one particular “client” served by the organization and the frustration a staff person had had with her that day in the program.

“She just wants attention.” Another staff worker chimed in.  “That’s all it’s about with her.  Attention.”

I nodded and told them the story of Melanie and her “attention seeking.”

In the days of the day program, Starfire U, when our building on any given weekday held over 120 people with developmental disabilities and dozens of staff leading outings and activities, Melanie attended our program.  Sweet natured and whip-smart, she’d flash a smile asking about your day, your kids, your weekend plans, your thoughts on recent movies, recipes, and just as quickly furrow her brow and be confused as to why someone would be mad at her for: kicking them on a Metro bus, slapping them on the cheek, for moving their stuff without their permission, for yelling at them, for pushing them, for telling them to shut up, for calling them names under her breath, for cursing at them.

I am not proud of it – but in a frustrating afternoon, after many requests from multiple staff for Melanie slow down, make better choices, leave the room, get a drink and take a breath, and on the cusp of having to write up another incident report about her “behavior” I put on my coordinator hat and printed out every single incident report ever written about Melanie that past year – January, January, February, , May, May, May, August, September, October, October, October...  A dozen or so, stacked up in succession.

Incidents documenting her behavior with other people with disabilities, towards staff, on the bus, in the program, and in more than one instance, her behavior bullying others from the day program online…  And I began to read them to her aloud:

“When Lena arrived Thursday morning around 8:15am she asked to speak with a staff member, John in private, voicing that she had been hit by another member (Melanie) at the bus stop the previous afternoon after leaving Starfire. She told staff that another member, Melanie had hit her unprovoked with a book while waiting for their next bus. Staff told Lena that they were concerned about the incident and would talk to Melanie immediately. When Melanie arrived at 8:00AM, staff member, John, pulled her aside and asked her to explain the incident that happened with Lena. She expressed that at the bus stop Tuesday afternoon Melanie had yelled at her multiple times before hitting her with an open hand in the collar bone area.”

Melanie cried, tears streaming down her face, and, I paused briefly, only to ask her ask her if I should continue.  Should I continue to read the way people see you? The way you treat them?  She said no that she’d try harder and better and we spent the next 25 minutes or so alone in a conference room chatting.  Me reassuring her that she was a good person and our actions don’t define who we are, but that we had to try better. Her smile was quick to reappear, the tears completely gone, her chipper self, returned.

I don’t remember what happened next.  I imagine a call was made home, a meeting might have happened with Melanie’s team and another incident would have occurred again repeating the same cycle.

The memories of the day program have since faded and the frustration of what those days felt like – the 9-3PM grind transportation drop off, attendance taking, doing art projects, baking projects, yoga, guest speakers about random topics – field trips to museums and zoos and Red’s Hall of Fame have also begun to fade.  I’m able to really process what these types of experiences meant and mean now that I hear them coming from the mouths of colleagues in other organizations.
 
Was Melanie attention seeking? Was she merely seeking connection? Isn’t all behavior attention seeking in some way or another?

Each incident report written about her, meant 1:1 time in an office with staff attention uninterrupted.  Sometimes it meant sitting next to an office person and helping with tasks: shredding paper, assembling outgoing mail.

The empty threats of phone calls home, new reports documenting “behavior” were another way that Melanie got some time outside of the group. Outside of the seminar of 15 people all learning about checking accounts, or healthy smoothies, or whatever else was put on the calendar to fill time, to build “life skills.”

“She just wants attention.”

“That’s all it’s about with her.”

“She’s like a totally different person when she’s not in the group.”

“She’s actually smart, and kinda funny. Not at all like when she’s driving us nuts on the workshop floor.”

Attention seeking behavior wants a response from others.  Validation, to be noticed.  Which leaves me asking, isn’t everything attention seeking?  Don’t we all want a response when we talk or ask a question?  Aren’t we all seeking validation that we’re doing okay, on the right path.  Don’t we want people to notice when we’re having rough days, when we’re excelling, when we just need some reassurance. 

Reading each incident report was shameful. It played into a power dynamic that I am not proud of.  That as coordinator of the day program, I had the authority over Melanie to make sure she understood she was “bad” and that if she couldn’t be “good” then we’d just have to do something about that.

A few years removed, I realize now that the attention she was seeking was in the small moments of reassuring her, she was a good person, that I saw her as such, and that, it’ll be okay.

For the past year and a half, I have been looking at this beautiful illustration of a plan or “PATH” for Grace.  It has remained in its place of honor, in our kitchen—the heartbeat of our home, and hung proudly with some of my favorite oil paintings.  It is a work of art.  It is a work of love, friendship, and support.  It is not the creation of one artist, but many. It is the work of people who inspire me to continue to swim upstream, not to settle – people like Tim & Bridget Vogt, and Jo Krippenstapel.  Many other amazing artists contributed to it, Torie Wiggins, a beautiful human being and talented actor & director, Michelle Markert, an amazing musician and director of our church choir, Winnie Brubach and Joe Krumm, who are singers in the choir, and other artists whose work is based in the art of love, friendship, and community.  People like Gail Webb, Barb Elleman, Ellen Fain, Amy Bailes, Elizabeth Pierce, Kara Broderick and Erin Broderick, Margot Brunette and the most important artist, my daughter Grace, with her brother Ben, her father Jeff, and me, Grace’s mum.

I still remember sitting at my laptop thinking through the people in Grace’s life and in our family’s life.  I remember being hung up on the fact that we have so little family here, in Cincinnati, and what that meant to Grace’s life, our life.  I remember how nervous I was at extending that invitation to join us in thinking about Grace’s future. 

A life. 

That sounded so big, long, indefinite. 

I remember spinning about who to invite, who would say yes, how it would feel if no one accepted the invitation.  It was like being back in my 20s again, putting myself out there, with the experience of rejection in my past, and the potential for rejection again, hanging like an anvil over my head.  This time it wasn’t just about rejection of me, it was about the potential for people I know and like, rejecting Grace and my whole family.  That seemed like too much to risk.  Not knowing seemed easier to me. 

Envision ostrich with head in sand right now. 

Sometimes that is just easier.  My heart doesn’t break.  My dreams aren’t crushed.  My friendships remain unscathed. 

I spent a lot of time thinking about what the invitation should say.  I spent even more time, waiting to push SEND.  Once I pushed SEND, my heart sank.  I had put us all out there.  I had risked our rejection, heartbreak and disappointment. 

Given that you see the photo of Grace’s PATH, you know what happened.  Many people accepted our invitation and showed up.  Those that had to say no, did so because they simply couldn’t be there, and offered to show up in other ways.  It was a beautiful night and it has been a beautiful, enlightening, educational, and transformative journey. 

But. . . it wasn’t the journey I expected.

At Grace’s PATH, we unpacked what was important to Grace. If you know Grace, she is pretty clear about what she wants her life to look like.  It’s something like this, I want to have my own apartment, I’m not going to live with my parents forever.  I am going to be an actor on Broadway in NYC and I’m going to have a penthouse apartment in Time Square.  I am going to help make it possible for people who don’t have money to come to my shows.  I want to perform in shows and have some of that money go to building schools for girls who have been forced into marriages and are now out, but never had a chance to go to school.  This is my daughter.  I am so proud of her. 

I am so proud of the young woman she has become. 

By the end of that night we had a plan--Grace’s PATH.  Grace would put on a one-woman show, about women, at a theater.  We had individuals who stepped up to help her do research.  We had an acting coach.  We had ideas of who to connect with around the city. The goal was specific and measurable as all good goals should be.  We had objectives to achieve the goal.  As a businesswoman, I felt like we had clarity and we were on a trajectory, which I expected to be a straight line. 

Fast forward to January 2020.  Grace performed her one-woman show, “She Persisted” to two sold-out audiences at The Know Theatre, in Over-The-Rhine.  Through these performances, Grace raised just under $2,000 for the Malala Fund.  Brava Grace!

It’s interesting though, while Grace accomplished these goals and so many people showed up, helped out, and supported Grace, what has really mattered is the journey, itself.  We always talked about this as Grace’s PATH, but in some way it became our PATH.  The journey taught us to show up more often and in more places.  The journey of the PATH taught us that there are wonderful people who share Grace’s interests and really appreciate her thoughts and contributions.  It reminded us that there will always be people who can’t see beyond Grace’s disability, but there are far fewer of these people. We learned that it takes time, it takes commitment.  We learned that there are far more opportunities than we could have imagined.

We learned that it wasn’t all about achieving the goal.  It was about doing something, contributing in some way, along with other people.

We learned more about what motivates and inspires Grace.  Each one of us stretched. Jeff and I recognized that we needed and wanted to be part of this journey.  We gained so much from being involved in Grace’s interests and we met new people, some of whom have become family friends who include Grace and expect that our invitation to them includes her too. 

At first, I saw our PATH as very specific and probably with an end, vs. a PATH that is a spark to something potentially life long.  The process wasn’t perfect.  In terms of the one-woman show, it turned out that Grace and I didn’t do a good job bringing in the people who offered to help with research.  This was partly because Grace and I didn’t have something fully in mind.  It was also that I felt like, I shouldn’t ask for help, because I can help Grace.  We worked just with Grace’s acting coach, Torie, and while we feel so lucky to have worked with her on this and will continue to work with her, it would have been better if I had asked her to involve more people.  I think it would have helped her, and it would have expanded Grace’s network of people.

With all that said, the journey wasn’t a straight line and that turned out to be just what we needed. 

Grace became increasingly interested in more than just putting on her show.  It is fortuitous that this is the 100th anniversary of women’s suffrage and there is a lot going on celebrating this milestone, around the region.  We were also fortunate that Bridget Vogt heard Grace’s interests in the suffrage movement and women’s issues in general. She (and later Katie Anderson) started bringing Grace to the main branch of the public library and letting us know about events happening.  Through Chris Smith at the library, Grace met Katherine Durack, a former women’s studies professor at Miami University, and a member of both the local and national women’s suffrage celebration committees.  Katherine has become a true friend to Grace and our family, and we to her and her husband.  Thanks to Katie Anderson, recognizing Grace’s feminist interests, Grace got connected with Sara and the other “Nerd Girls” who are working on a transcription project with the Library of Congress.  Grace’s interest in strong women who have made a difference, spurred her to ask her transition program (think practical life skills program), Pathways, to see about getting an “internship” at The Harriet Beecher Stowe House.  Thanks to people like Emily and Gwen at Cincinnati Museum Center, Grace is now part of the region’s planning committee for all things “women” and “suffrage” this year. 

Grace’s one-woman show was a complete success and she did an outstanding job.  We were moved by all the people who showed up those nights to support Grace and us.  Grace’s PATH turned into so much more than what we could have imagined.  A former Montessori teacher of Grace’s wrote to us and said that Grace has inspired the next generation of girls, as her daughter immediately began researching the women who Grace represented.  Grace is seen as an educator, as most people didn’t know all the women in Grace’s show.  Grace’s participation in our church choir has gained her recognition and when she isn’t there, she is missed.  The director of the Harriet Beecher Stowe House wrote us a note declaring that Grace is “an asset to the volunteer team.”  Elizabeth Pierce, the CEO of Cincinnati Museum Center, has called Grace, “our local history ambassador.”  John Faherty, Executive Director of The Mercantile Library wrote that Grace needs to stop by The Mercantile to see the books they have about women and said, “Grace is an endlessly impressive kid. And sneaky funny.”  Yes. These are some of the “movers & shakers” in Cincinnati and while it seems like name-dropping, it is really more about these people being immediately valued by what they do and taking notice of and valuing Grace and her contributions.  The people who have been in our lives over the years showed up again. They loved Grace’s performance.  They learned from her and were impressed with what she did.  They look at Grace differently now and probably value her more.  Friends, family, neighbors showed up to support me and Jeff too.

As I sit here on a Friday night, with a glass of wine, while Jeff makes our weekly homemade pizza and we are discussing Grace’s PATH, I don’t know if I will take down the PATH as a recognition that we did it or if I will keep it up as a reminder that it is ongoing.  What I thought was an end to itself, actually created the spark for many opportunities, discovery, and relationships.  Either way, Grace is on her path, connecting with people who share her interests.  Figuring out what motivates her, has Grace desiring to go out and contribute to various projects, as well as volunteering at museums.  A PATH is not without pitfalls and obstacles.  We have a way to go, before Grace can volunteer at Cincinnati Museum Center or The Harriet Beecher Stowe House on her own.  However, people who make those decisions are flexible and desirous of having Grace be successful in these roles.  We are so fortunate.  We are on a path with Grace and with it we are learning so much about building community and growing our relationships, about Cincinnati, strong women, and Grace, herself. 

In June of 2019, I profiled Jean Vanier and his life of supporting people with disabilities in intentional communities, L’Arche.

This weekend, multiple news outlets including the New York Times, Washington Post, the BBC, and Catholic Telegraph report, “Jean Vanier, founder of the ecumenical L’Arche communities that provide group homes and spiritual support for people with intellectual disabilities, used his status to have "manipulative" sexual relationships with at least six women, concludes an internal investigation commissioned by the organization.”  The report is explicit that the inquiry did not find evidence of sexual abuse of people with developmental disabilities.

Starfire, like many organizations and groups who stand in support of people with developmental disabilities and their families, remain saddened by this news. As an organization that has shared Vanier’s work, we must now also reckon this complex history.

Et tu, Vanier?

What it reminds us and teaches us is a healthy skepticism of figurehead leaders, particularly of older men who seem to hold the sacred wisdom. To be aware of the allure of those who seem to know the answer to a complex, difficult question of “where do we belong?” and to resist elevating humans, systems, or programs towards sainthood, idolatry, and worship.

Instead, this unfortunate news reminds us that it is once again, the average, everyday work of people, families and communities that make a community whole. And, as an organization, we challenge ourselves to de-centralize Starfire as the authority, and instead, continue to work to center families’ voices, lived experiences and work at the forefront of this movement.

"The culture of power-over people with developmental disabilities is stubborn. Admonitions to respect the right to choice and dignity of risk are seldom sufficient to relax its grip. The dominant presumption that something about a person demands fixing or treatment hijacks thoughtful consideration of a whole person’s purposes, will and preference and empowers professional judgments about health and safety. The struggle to create the conditions to intentionally exercise power-with people continually challenges our practice.”

Recently, seven of our colleagues in inclusion from across the U.S. (Carol Blessing, Marcie Brost, Beth Gallagher, Kirk Hinkleman, Peter Leidy, Beth Mount & John O’Brien) published DISSENT FROM CONSENSUS: A Response to the Person-Centered Planning & Practice Interim Report.

The Practice Interim Report in question is a piece developed by a consulting company commission by the US Department of Health & Human Services to come to a consensus on defining person-centered planning for systems.

Our colleagues write passionately about the danger in “consensus” from human service professional and government entities around a practice and experience that has given birth to a variety of dreams, imagination, clarifying identities, competencies, and giftedness, and emerged a vision of newness for people with developmental disabilities, their families, and our communities. 

Starfire fully supports the Dissent opinion and rejects any effort to standardize, mechanize or otherwise systematize, a practice which has given life to numerous people with developmental disabilities, their families, and our communities.

Our colleagues’ writing reads to us, as a list of what people with disabilities and their families and the people who care about them are up against - in one concise and beautiful sentiment.  They make a case for the wisdom and usefulness in “chaotic self-organizing” allowing people themselves to design, experiment, plan, and dream alongside the support from family members, service providers and community members to bring to life the possibilities set forth. It is, at the heart, what person-centered planning has been designed for. 

Person-centered planning has had the most profound impact on Starfire’s work, radically shifting our understanding of our role in people’s lives and setting us in motion phase out of legacy and congregated models of group support.

Allowing people to come to get to dream, ideate, and set action steps together for what a good life can look like and can mean, they write, “person-centered planning as one disruptive element in a purposeful process of organizational and social change.”

This has been my experience in 100+ person centered plans that I have graphically facilitated and helped to host since 2010, representing 100+ unique people, stories, their families, and their dreams of what an inclusive, good life could and might look like with a little luck and some good work.

Admittedly, there were suggestions made in the 100+ during person-centered plans over the past decade that I have been in that I simply didn’t record.  Once, a suggestion that Beau would be happy in a nursing home (at age 23) because they had lots of activities and he could be kept busy. We were able to shift the conversation to what kind of business was important to Beau, and the conversation led to a dreaming around teaching kids to swim, volunteering at a local school and the idea of institutionalization fell to the wayside. Having something important to do was at the heart of the suggestion, and this uncomfortable pause with markers in hand, allowed the conversation space to breathe.  And it stopped “nursing home” from being Beau’s North Star.

Another time, a debate about scheduled laundry days was a part of a vision for a good life for JP. We were able to navigate the conversation to what a good home life looked like to JP and steered the conversation into autonomy around his days with his group home staff, setting up a schedule that worked for him and wasn’t regimented on rotating staff schedules that conflicted with his love of WWE Monday night raw events.

The Consensus report lists competencies and qualities required of a good facilitator, and many of which Starfire would agree with.  However, an exhaustive list wouldn’t cover the examples above – how to navigate a conversation back to the goodness and intentions of inclusion and assuming a facilitator holds the same values of inclusion. How to hold space and sit silently while a “bad” idea is proposed, how to assist the group to continue to remember the good things in life are not often found in services, strict schedules, congregated programs, disability-centric opportunities. While the competencies as a whole are a good list, it doesn’t encompass the intangible skills of allowing a conversation to flow and capturing the big idea, the good life idea, and sift through filler that is often not in the best interest of the focus person, not truly inclusive, and neither positive nor possible.

In 2010, Starfire began to fully invest in learning about person-centered planning, and about PATH planning specifically.  As I’ve written before, I was admittedly, skeptical. The idea of putting down to paper a vision for the future seemed ludicrous.  We practiced mini-PATHs for each other, and colleagues walked away hanging their posters above their cubicles. I recycled mine.

From Things Change and That’s the Way it Is Part 1:

“Bridget learned about PATHs, and lead a staff training on it to bring us along…We did very small personal mini-PATH’s (the North Star conversation only on speed.)  I remember my North Star included buying a house, getting married, learning about bee keeping, starting a garden in my backyard, writing, and a few others that I can’t remember.  I was skeptical about the whole process, not buying into the hippie shit of drawing what you’re feeling and dreaming out loud, and all the other hokey stuff I thought I’d left behind from when I planned retreats.  At some point, I became embittered by it.  We gathered as a large group again, shared our North Stars and at the end of the afternoon, everyone rolled theirs up and took it to their desk.  “I’m going to keep this” someone said.  “I’d love to hang this above my desk as a reminder of what I could be. I’m embarrassed and ashamed now to say that I felt very differently.  I immediately crumpled it up and recycled it.  The idea of “writing something down and seeing it as an image makes it more probable to happen” was bullshit.  I was not an immediate believer in the process and wasn’t buying that this was something that would really change people’s lives.  And who cares about drawing pictures?  Was I ever going to really learn to keep bees?  Buying a house?  When I’d just graduated in 2007 with large amount of student loan debt and was paying out of pocket for graduate school?”

And yet, I did do all those things, which I later blogged about here, and here, and here.  And many people whose PATHs I was a part of have also gone on to accomplish their goals, bring to life their North Stars, on their own timeliness outside the bounds of a service system which mandates outcome reports, yearly MyPlans, skills assessments, billable hours, and the like.

"When we think of person centered planning, we think of specific faces, names and stories. As we read it, the Interim Report aims to meet health system demands that position person centered planning as an instrument of that system, bounding a universally defined process in meetings, specifying competencies to facilitate plans, and outlining system management processes to assure compliance in implementation."

Likewise, when I think of person-centered planning, I think of 100+ PATHS.  Conversations that were joyful, laughter filled remembering best moments, childhood stories, inside jokes and time spent in communion, tough and difficult (I want to move out/I want her to move out), conversations that led to new identities – docent, brewer, fashionistas.

Starfire will continue to incorporate person-centered planning into all that we do.  Not because it’s regulated and or perhaps required, but because its role in our work continues to hold importance and power for people with disabilities, their families, and our communities.  And because we’ve seen, what happens when we invest fully in what is positive and possible.

Thanks for your interest in Starfire! We are always grateful when ordinary citizens such as yourself wants to find a meaningful way to get involved.  

First, we’re glad you found us. It goes to show that citizens realize the important role they can play in the life of a person with a developmental disability, and their own ability to change the culture that excludes them.

To start, here’s a brief primer on what we don’t do: 

1. We don’t host school groups, sororities and fraternities, or corporate give back days that are a “one and done” experience where groups of people can drop in and drop out of the life of a person with disability. If you’re looking for a place where you can fulfill a volunteer hour requirement of some sort, please look elsewhere. Your group would be welcomed at a variety of wonderful nonprofits who need a group of willing volunteers to get some work done in a few hours.

Starfire isn’t that place.

2. We don’t put disability on display for groups. We know that volunteer groups can sometimes have a takeaway after volunteering that is to feel better about themselves, or approach volunteering as a lesson in gratitude for what they have, to see someone else’s struggle and feel better about their own lives. We approach our work with 360 degrees of dignity and protect against putting people with disabilities or their families in an undignified role.

To be frank, inclusion requires a different kind of work than a traditional service model: one in which people are not in separate unequal groups of “volunteer” and “client” but instead, seen as equals as neighbors, coworkers, and collaborators. Traditional volunteering separates us from each other and creates a power dynamic where one party (the volunteer) is the benevolent good person and the other (the client) is the disadvantaged person in need of services. 

And while there are lots of nonprofits that could absolutely benefit from a large group of volunteers helping to paint walls, play music, pack lunches, bake cookies with, chaperone an event, or sort donated goods, we’re just not that type of place. 

One-and-done volunteering with Starfire does more harm than good. Especially in the lives of people with disabilities whose life experiences have been full of temporary people who don’t stay.

3. We don’t want to turn you away from being part of building inclusion!

We want people just like you – curious about how to make the culture more inviting and welcoming to people with disabilities and their families to dig in with us. 

If you’re interested in educating your corporate group, service class, or other group about disability issues, institutional injustices, then let’s start that conversation. 

4. We don’t think volunteering is not worthwhile or impossible to do at Starfire. In fact, if you really, really want to help Starfire here are a few things you can do: 

• Become a megaphone for our message and help promote our work. Follow us on Facebook, Instagram, YouTube, and subscribe to our mailing list.

• Donate. Seriously – if your company or group wants to give back to people with disabilities, invest in Starfire.

  We put grants in the hands of families of people with disabilities who decide how best to spend those dollars to work towards inclusion in their lives and neighborhoods.

  Donations helped projects like this, this, this, and this come to life.  By donating you are saying that you agree that families are the best stewards of resources to make their loved one’s life with a disability the most fulfilled.

• Fundraise for us.  Get some friends together and host a happy hour or a give back dinner night at your local restaurant. Run a Facebook campaign in support of our work. If you’d like to know how to get started on that — contact us!

• Be inclusive in your work/neighborhood/faith community/life.

  If you’d like to learn how to do this, a radically different approach than volunteering, then let’s talk.   

Lauren Culbertson has been on a learning journey with Starfire over the past year. First, she spent a few days with us on assignment from Coburn Venture’s Community For Change (CFC) to learn about community, change, and innovation. Then she joined Starfire’s leadership event, alongside 15 other nonprofit seeking to making changes to the current disability service model. And again came to Starfire when we hosted Darcy Elks to learn about the power of image, connectedness and relationships.

This writing is an excerpt from her notes on what her learning has meant for her personally. We love sharing these notes because as a learner, Lauren is adding so much wisdom and experience to our work at Starfire. #letsgettoit

To say that Starfire is a nonprofit in Cincinnati that works with people who have disabilities is one of the greatest understatements of the decade. Yes, this is true stripped down to the most literal sense, but it is impossible to summarize Starfire by the people it serves and fully capture the spirit of the transformational work they are doing, breaking down artificial barriers and bridging the private and public life of neighbors.

Tim and Bridget Vogt started Starfire in 2003 out of their passion to see adults living with disabilities in the Cincinnati area live meaningful lives. So, they designed a program that was and still is a very popular model to address the challenge of people living with disabilities not being able to enjoy life like everyone else: day programs. Starfire originated as a center where adults with disabilities could come together each day and participate in activities like cooking, playing games, going on field trips around the city, or taking classes. People would be dropped off in the morning by their parents or whoever they were living with and then go back home and do it all over again the next day.

I distinctly remember the first time I met Tim and he told his story. He said the moment the lightbulb went off for him was when he realized that they were creating “parking lots” rather than “launching pads” for the people that were coming to the day program. All they were doing was keeping them in the boxes where society had put them. The model reinforced the stereotypes that people with developmental disabilities could only flourish when with other people with disabilities, or that they couldn’t make decisions for themselves about how they wanted to spend their time, or that they didn’t add much value to the rest of their communities. Tim and Bridget realized that the entire model upon which they had built this growing nonprofit over the last five or more years was not really doing much to help…at best, it was just keeping people right where they were and supporting negative stereotypes for the rest of the people around them. 

 So, Tim and Bridget did something that is really really hard for an entrepreneur of any kind: they admitted they made a mistake and that things needed to be radically changed.

They needed to let the Starfire that they had come to know die.

And today, Starfire IS radically different than the day program it once was. The model is much more decentralized (the building where the day program was once held is now rented out as office space to other nonprofits). The unit of participation (for lack of a better phrase) is no longer just people with disabilities, but entire families. Starfire’s core program today is giving sizable grants to families to do independent projects that work to integrate the family better in the community and build natural relationships between people who have a disability and people who don’t.

 It puts the power into the hands of families and local communities and says, “I trust that you know how to be the best stewards of this funding.”

The goal is to empower families to play a role in “artfully facilitating” relationships between their family, their family member who have a disability, and their local community. And what they are doing seems to be working now.

But this change made some families and funders who partnered with Starfire very uncomfortable…even angry. Some cut ties completely.

 The beliefs held by Tim and other Starfire leaders such that day programs should be abolished, that too often institutions are making decisions for people that they are fully capable of making themselves, or that the value of a person is not derived from their economic contribution to society, are still far from mainstream. As I witnessed in the conversation of some Starfire families and disability practitioners, these ideas completely go against the grain of traditional thinking of how we as a society can best help those with disabilities. It is not comfortable to start to wonder if the way you have thought about something – especially something directly related to the identity of a son, daughter, or patient – may not be what is for the best.

We have become a society conditioned for comfort. We struggle to sit on the train or wait in a line without scrolling through a newsfeed. We are obsessed with good-smelling candles and oils and set our thermostats to our exact preferred temperature. We like to surround ourselves with people who reaffirm our beliefs and who we can commiserate with, we surround ourselves with media that creates an echo chamber of what we are already thinking. We like to live around people who are just like us. We’ll do just about anything to stay comfortable and make sure that comfort is not disturbed.

But where is the joy in that?

During a break in one of the workshops I got to attend at Starfire, I stepped into an empty conference room to take a call. Soon after, a young woman whose name I later learned was Ann, walked into the room, leaning on another woman. I recognized them both from the audience. Ann is nonverbal and has limited mobility, and in full transparency, I don’t think I had ever had a conversation with someone who is nonverbal before. As I continued my phone call, Ann walked towards me, looking at me straight in the eye. The woman she was with smiled. In full transparency, I felt pretty uncomfortable. And I think it was only because of what I had learned those last few days at Starfire that after I hung up the phone, I smiled back and gently took Ann’s hand and said, “Hi, I’m Lauren, it’s nice to meet you.”

If it had been at any other time or context, I don’t think I would have talked with Ann.

Why?

Because I was uncomfortable with not knowing how Ann and I could communicate since we communicate differently, and I probably wouldn’t have wanted to lean into discomfort out of fear of making a fool of myself or offending or just doing something wrong. 

One of the things Starfire reinforced for me is that there comes a point where remaining in comfort is no longer productive.

 In his “Letter to a Birmingham Jail” at the height of the Civil Rights Movement, Martin Luther King Jr. talks about how tension – perhaps another term for “discomfort” – is imperative for progress as a society:

“Just as Socrates felt that it was necessary to create a tension in the mind so that individuals could rise from the bondage of myths and half-truths to the unfettered realm of creative analysis and objective appraisal, so must we see the need for nonviolent gadflies to create the kind of tension in society that will help men rise from the dark depths of prejudice and racism to the majestic heights of understanding and brotherhood.”

It is perhaps a societal construct that we need to avoid discomfort, that it is a bad thing. But when looking back upon the arc of human history, in retrospect, the greatest leaps and bounds society has made were preceded by eras of tension. Today more than ever, Western society holds us to an expectation to have an answer – and to be convicted in that answer – at all times. My time with Starfire has also reinforced the importance of allowing space for people to feel uncomfortable – even encouraged to feel uncomfortable - and feel supported in getting to a place where maybe they will say, 

“I am going to change my mind. Maybe there is a lot I don’t know, and I want to learn more.”

There is freedom and there is joy in being able to utter that statement without judgement and knowing that you have a community of people behind you. Without tension, we – and the rest of our communities – remain stagnant. We don’t progress. In my case, I would not have made a new friend. I don’t think we find joy just when we are comfortable…I think joy sometimes comes after (even during) periods of discomfort, periods that produce growth, progress, inclusion, even a greater sense of love.

Among the barrage of back to school paperwork for a preschooler and a kindergarten there it is was. An unassuming invitation for after school dance classes. A description that says this particular program enrolls children who are at least 5 years old, live within the Cincinnati area, and are willing to attend class in dance appropriate clothing every week. And then, ever so subtly, an additional stipulation. In order to participate, they require that children “do not require special needs assistance for a physical or mental condition.”

And there it is. An explicit “You Are Not Welcome Here.” I’ve heard from families of people with developmental disabilities that this experience is a common one for them. The metaphorical door slammed in their faces. It happens at birth of their child – what is meant to be a joyous day, is met with avoided eye contact… It happens when looking for childcare – we can’t take your child given the circumstances... It happens when enrolling and advocating for a typical Kindergarten class… It happens for soccer teams and theater groups and summer camps and scouting groups and after school rec center activities... A variety of voices saying, “No.” “We just can’t...” “We won’t be able to…” “Surely you understand…”

This rejection can be explicit and in your face offensive, degrading, dehumanizing – someone calling a person “retarded.” I find however, that more often, they are the brief, and everyday occurrences that send the message verbally or otherwise that a person’s presence if disabled, isn’t welcomed, isn’t valued, and frankly, is inconvenient to everyone else. And in our folder, and in take home folders all across the school district, families of children with disabilities were also reading that flyer. It’s just a flyer for a children’s dance class, you may be thinking. Surely, there are other dance classes? Ones that children with disabilities can go to? Yes, it is just a flyer, and yes, it is just a dance class. And yes, there are other dances classes specifically for children with disabilities. What we are noticing is the instinct instead to separate, distance and push away, instead of asking “might there be a way to include everyone who wants to dance?” These rejections reinforce the explicit or implicit message you do not belong here. This isn’t for you.

That while we said children who are at least 5 years old, live in Cincinnati, and can wear their tap shoes and dance pants each week, we obviously didn’t mean those kinds of children. While it’s just a flyer and just a dance class now, it quickly becomes a classroom, an apartment or house, a job, community and friendship and love later. The rejection is cumulative, the isolation it is creating is compounded over time. When this rejection is constant, what does that do to you? Your family? What you start to believe about your community, your neighbors, your friends, your own family? I don’t know the gutting feeling of my child not being welcome, of hearing no over and over again. But I can certainly bring it to light and work against the culture that believes this to be okay. That some of us get opportunity, invitations, and welcomed and some of us just don’t, and won’t, and can’t isn’t okay.

At Starfire we’ve thought a lot about how to approach the work with an understanding of what people with disabilities and their families are up against. And, while my children have no interest in dance and we wouldn’t sign up anyway, and they don’t have disabilities so they wouldn’t be excluded had they wanted to, this is something that all other families would also receive in their take home folder. And just because it doesn’t affect my children, doesn’t mean it doesn’t affect our children.

At a recent celebration of a past teacher of mine, a keynote speaker told a story of a purpose.

A city dweller had purchased land on a whim in the countryside and had forged a connection with the farmer next door. Knowing little about farming, but having an insatiable interest in growing things, he bought the land and got to it. It was hobby project, not his livelihood– a summer home of sorts, but one that brought him such joy to experiment in planting crops and flowers.  And as it happened, the farming adventure led to a friendship with a seasoned farmer next door who was willing to offer practical advice, lend tools and assistance, and guide the city dweller in his fantastical efforts.

Years passed and the farmer’s wife passed on as well. Now much older, unable to care for the land into his old age, or keep up with the maintenance of the farmhouse, and the farmer found himself preparing to move into an assisted living home in the coming weeks.  His beloved land was was being auctioned off as well as the farmhouse and most of its possessions.

The city dweller purchased some chairs from the auction and went one day to collect them from the house. The farmer, happy to see his friend before his move, remarked that he was grateful that someone he knew and cared about was taking the chairs. Surprised by this, the city dweller inquired why this was. They were nice, solid chairs, but certainly not heirlooms pieces.  What was it about the chairs?

The farmer said that the chairs primary purpose of course was for sitting and that they were very good and sturdy for that purpose, and that over many decades those chairs had served he and his wife well in that regard.  Sure, they had some knicks and scratches and marks from time, but their remaining days certainly outnumbered his own. Their significance was not in the primary purpose of the chairs, but their secondary purpose. And that was that they brought he and his wife together each night, to reflect on their days, which turned into weeks, which turned into years, and their lifetime together.  The chairs provided a space for togetherness, for pause and conversation over a lifetime.

He said the chairs held memories of his young pregnant wife, of her as a new mother nursing their children, of them watching storms dance across their fields together as a family. He said the chairs were where he became a grandpa, nestling a new grandchild and meeting each other for the first time, completely enamored.

The chairs held precocious children (and numerous more grandchildren) in pouty time-outs, and children nestled on grown up laps reading stories next to the Christmas tree, and children’s coloring books and crayons which often missed the pages and made their presence known on the wood. The chairs had been the backbone of forts and caves and castles through the years with linens and sheets and blankets and doilies strewn across the top. They’d been the trusty accomplice, a partner in crime to reach the top cabinets in the kitchen where the treats were hidden from sight. The chairs held the occasional household cat over the years – and stacks of books and magazines that were read or sometimes just collected upon them to keep the cats off.

The chairs, he said, had held friends, tipsy from summer porch beers and eyes wet from laughter, and sometimes held them safely until the next morning when they’d gather their senses and keys and head home. The chairs had held his wife, sick, with an afghan blanket around her as her remaining days dwindled. The chairs held visitors paying their respects after his wife died, friends who had travelled near and far to share a memory, and to hold his hand.

The farmer remarked that the chairs of course we’re just a place to sit, and that the city dweller would find them to be adequate for that use – sturdy, reliable. That was their primary purpose of course, sitting, but their secondary purpose was to gather and that they had served him well throughout his lifetime.

I listened the speaker telling this story, shifting uncomfortable in a folding plastic chair in a high school gymnasium and wondered about this notion of primary and secondary purpose. How many objects and things are utilitarian, and we miss the underlying secondary purpose of their everyday existence in our life? How many people are utilitarian, and we miss their underlying secondary purpose of their everyday existence in our life?

We talk a lot about the purpose of jobs and Starfire’s approach to helping people with developmental disabilities in becoming employed.  We’ve been successful in this work – helping well over thirty different people find unique jobs that fit their skillset and their limitations.  From IT to marketing to gardening and hospitality services.

The primary purpose of any job is to earn a paycheck and to fill up one’s time, to have something to do.  But the primary purpose of employment isn’t why we’ve supported people with disabilities in finding a job and working to help them keep it. The secondary purpose is the driving factor behind this work of finding work.  The secondary purpose of working for many people with developmental disabilities is more important than the primary. To fill one’s time is fine, necessary even, but not if that time is filled with meaningless, disrespectful, devalued tasks.

Do we find jobs just to find jobs?  The answer has always been a resounding no. The secondary purpose of work and Starfire’s work of finding employment has been in the nature and potential of relationships.  In becoming a coworker, having a role within a team, being needed, being known, making a contribution, and perhaps in some places, and perhaps over time becoming a friend.

Sure, a chair is a place to sit. But the farmers story tells us that its secondary, and perhaps true purpose, is providing a space for human connection.

Sure, a job is a place to earn money.  But perhaps its secondary- and true purpose in relation to our work of community building- is providing a space for connection as well.  An additional avenue for people with developmental disabilities to be known, be seen, be valued, be accepted, be challenged, be needed, be respected.

-Campfire Girls Award ~ 1925

I found this proclamation at an antique store a few years back and immediately purchased it to bring home to the Starfire office. It isn’t widely known, but Starfire’s origins date back to Campfire Girls here in Cincinnati before our inception as “Starfire” in 1993. As our history tells, the scouting organization was inclusive to people with and without disability – a vision of inclusion we hold still today.

Through my investigation, it seems that the Guardian of the Fire award was given annually to a leader who exemplified the values above. And we love the wording and imagery it creates.

(We’ve subtly used the campfire as a central image of connectedness and goodness a few times, too.  Like in our video here)

Over the years, Starfire has given awards to recognize leaders of inclusion in Cincinnati.  These awards have been given to outstanding volunteers, paid staff, family members, and people who disabilities who have given back to the community in some extraordinary way. This year, we are proud to bestow the inaugural Guardian of the Light Award to recognize a person in the community who has furthered the work of inclusion, heightened the imagination of what’s possible in our communities, and lives these values through action.

This year, Starfire will recognize Cary Brodie, who has shown a deep and consistent ethic of inclusion. Cary has been working to restore a half acre of woods in Madisonville that was given to the Park Board by Myron G. Johnson Jr. in 1972.  The land had fallen into disarray, overgrowth, and a de factor trash dump.  Cary, along with neighbors, spearheaded weekly cleanups, removal of invasive plant species, and land clearing to make it bird friendly again. In doing so, Cary has brought together dozens of neighbors from all walks of life – young and old all willing to work towards the vision of a beautiful restored space in the neighborhood.

Before and after photos of the changes in Johnson Woods.

It is because of her vision, and her hard work and inclusive spirit, that Starfire bestows the Guardian of the Light Award:

It shall be thy task to keep the newly kindled fire alight;
To know the earth, the sea, the stars above; 
Hold happiness; seek beauty; follow right; 
Offer a friendly hand to all who ask; 
And, day by day, 
Lead sister feet along the golden way—
The road that leads to work and health and love.

Join Starfire at our 2019 Annual Celebration Friday, September 20, as we honor Cary and all those who have built inclusion this past year!

Buy tickets (kids free!) to our 2019 Annual Celebration >>

All photos courtesy of Johnson Woods Bird Sanctuary on Facebook

A group of nieghbors with Cary (far right).

More neighbors of Cary's.

A work day clean up

Cary includes a neighborhood kid who helps water new plants.

Danny and Cary pose in Johnson Woods

 When Carole and I became community building partners I had never heard the word “Lolita.” Beyond the word there is this beautiful culture that I was completely unaware of. If Carole were to relay a story of her first time telling me about Lolita she would probably laugh remembering my attempt to repeat what she said. She would continue by telling you about how she patiently began introducing me to a world and culture that she is so passionate about.

If you have never heard of Lolita I will try my best to introduce you in a few words. The dresses are inspired by Asian culture and have a vintage flair. It is also referred to as Japanese street fashion. They have sweet, feminine details like lace, frills and ribbons. Accessorizing is also important. Shoe choice, tights, jewelry and hairstyle pull together the look. It’s not a style that you would wear to a job interview or to school, but rather to express a feeling of joy and happiness through fashion design. Each dress is a work of art.

The more I thought about Lolita the more I realized the unique power within the community.

Our job as community building partners is to meet people who share similar passions with Carole. It’s obvious as soon as two Lolitas meet each other. They have a powerful sense of self and a desire to be independent of how society defines beauty. This deviation from society’s definitions allows for a more inclusive world - I had never heard or seen anything Lolita related, and wherever we are, whoever we meet, I am welcomed by someone new who is thrilled to introduce me to her passion. Creativity radiates from their soul. It is beautiful.

So began my journey in collaboration with Carole to create regular, inclusive events among this fashion world that would hopefully draw beginners and experienced fashionistas alike. Carole worked to create a Facebook event, a tea party and lunch, that drew in three interested women. The second event drew in five women. It is Carole’s leadership and sense of self that brought these women together. Often it isn’t easy to leave your comfort zone and meet up with people you don’t know. Our brains can be pretty unforgiving imagining all of the things that might go wrong. But she persisted. We planned events that didn’t go as planned and she was willing to come back to the table, brainstorm, and keep working toward her goal. She has been successful in making multiple new social connections, and it is due to her intentional networking that the connections continue to grow into closer relationships. 

What we learned in collaboration with each other are lessons that can’t be taught in a book, at a conference, or in a class. It takes bravery to meet people and experience that unique joy you feel when you connect with people who share your same passion. People are waiting to be asked about their gifts. Don’t be afraid to ask. What if Carole hadn’t brought these wonderful, brilliant women together? What if I had never learned the word Lolita? That one word has enriched my life and I’m better because of it.

Christopher Alexander’s book, The Timeless Way of Building, is one of my very favorites.  It is primarily seen as a book about architecture, but is also a book about a way of life.  Alexander wrote the book in a beautiful way, with one or two lines in italics that sum up the general principals of his thinking, followed by un-italicized prose that dives deeper in the specific applications to architecture and design.  He suggests reading the italicized parts first, then going back and re-reading the entire book, which can be accessed in it’s original form, but digitized, here: https://archive.org/details/TheTimelessWayOfBuilding/page/n2

At the risk of breaking up the pattern, I was interested in a version that was italics only, for ease of reading, and so converted the PDF to the following document, and edited out the un-italicized portions.  I told a few people about it and they asked if I could share it and there seemed to be interest, so here it is!

In the transition from PDF to text, some of the translation ran into trouble, so I reformatted any typos that popped up.  In particular, commas were translated as “y” or “-“…and there were many cases where “p” was interpreted as “f.”  I think I’ve caught all of these, but it is possible a few remain.  If you discover any of these in your reading, please email me at tim@starfirecouncil.org orteevee999@gmail.com and I’ll make the edits.  There are also a few italicized lines that I edited out as they referred specifically to pictures in the book, which were confusing as I read them.  I think there might have been only 3 or 4 instances of this and I left any that referred to pictures but also contained narrative included.  If you have better ways of thinking about this or suggestions  – add the pictures? – that is welcome, especially if you are willing to work on it.

Enjoy and please remember that this is no replacement for reading the whole book.  This is simply a way to get started into it and I created this in deepest respect to Christopher Alexander and the content, which never is far from my mind as a constant inspiration.

Here is the link to the PDF:

Timeless Way Italics Only

enjoy!

“I hope, wherever you come from, 
there is someone who holds your story. 
Someone who remembers you when you 
were knee-high to a grasshopper.”  
–excerpt from “Who Holds Your Story” by David Pitonyak  
 
As a writer, I tend to notice, document, hoard interesting bits of human lives into my brain, and save them in a private stock pile like a squirrel. Small notes in my phone for later, scrawled reflections or observations in the margins of agendas, notebooks. In my phone is a running tab on observational human behavior that I found interesting, troubling, curious.

There was the man at the YMCA who swam wearing multiple gaudy gold rings and splendid gold chains tangled in his thick, salt and pepper chest hair. Back and forth in never ending breaststrokes, his jewelry would catch the sun in the overhead pool skylight and glint across the lanes. 

There was the exasperated mom I overheard in a coffee shop lamenting to a friend that her daughter was going to lose her full ride if she didn’t get her shit together and get over that eating disorder phase.

The single mom at the airport force feeding a breakfast sandwich to her three children, alternating bites like baby birds in a nest as the TSA line inched up. 

The post on a neighborhood Up For Grabs Facebook page offering used, natural deodorant, with the disclaimer that it caused a rash. 

While these anonymous observations are collected innocently for no apparent reason, other than what it shows me about the curious nature of humanity, there’s a distinct difference in documenting lives of people we know, people we support, people we provide services to more intimately. 
 
One of the more challenging conversations we’ve had at Starfire over the past year is the importance of storytelling and the delicate line we must tow in telling someone else’s story. The question of “who holds your story” tugs at me and is especially important for nonprofits to consider.  Are we crafting people’s stories to fit our own purpose? How do we, as nonprofit leaders, as social media marketers, as fundraisers and donor relations professionals and grant writers, as public relations professionals, share a story that is honest and truthful and respectful and genuine?  How do we tell the truth of the matter, give real life context, without violating the depths of someone’s personal experience with trauma or pain? 

Furthermore, should the holder of someone’s story be a human service organization? Is a family’s story held sacred when it’s also needed for grant reports and to leveraging funding? Where is the line? How do we know if we’ve crossed it? 
 
Starfire uses “a secure online database powered by University of Cincinnati Center for Clinical & Translational Science and Training” to document and measure the outcomes of our work. That’s how we put it in grants. Of course, this is important to do: is what we say we are doing getting done?  Are people with disabilities becoming more connected to the community?  Are people with disabilities finding jobs? Are creative projects being launched?  Are we taking people with developmental disabilities lives seriously with our time together?  But there’s also the real story of our work that documentation simply cannot tell. Things like: spontaneity, intentionality, beauty and creativity. Or the opposite – intolerable experiences like getting tangled up in “service snafus” or emergency respite or litigation. 
 
Internally we wrestle with how to share this work – the behind the scenes work of Community Builders, the brave first steps in creating a project, and the new work of supporting families leading creative projects in their own communities. We send emails and newsletters and produce Annual Reports, produce videos, lead trainings, launch podcasts, and write blogs. We make a commitment each time: to honor each person’s story truthfully, delicately, and with the expressed permission and participation of those sharing their lives with us. Because these stories don’t belong to Starfire. Sure, our fingerprints are all over the scene, but they aren’t stories that we as a nonprofit organization can hold. These stories are held by people – as ordinary as you and I, stories that are held by moms and dads and brothers and sisters, coworkers, neighbors and friends. A snapshot in time celebrating the struggle of making something good, something more, happen together in the world. 

Related Posts:  

Case Files and Memories 

Beer   
 

How it came to be decided that bonsai might be a pursuit is a longer story.  But, we found ourselves one morning Googling bonsai, and given Becky’s previous work with fairy gardens and love of plant life in the miniature, it seemed like a good next step. Community building work is often slow, long haul work.  We don’t fully recognize our efforts until after some time when the long view comes into focus.  There’s research, trial and error, meeting new people whom we hope will become friends or advocates, and there are small successes, some failures, and some days suspended in what’s next apprehension.

Every once in awhile though, community building is fast, go now work, and those are the days I love.  After series of Facebook messages, an email and some texts the week before, and we found ourselves on Wednesday afternoon waiting to meet Lemual outside of the Krohn Conservatory.  We agreed to meet at 12:30, to walk and talk together while checking out the bonsai display there.  Being Butterfly Show season in Cincinnati, I paid admission for the three of us, and let Lemual lead the way, observing both his and Becky’s fascination for the ingenuity of the landscaping outside, the variations of cacti and the dry air of the greenhouse, the misty coolness and the vibrant colors of the orchid room.

bougan

Eventually we meandered into the bonsai room.  Lemual’s thoughts on gardening and cultivating trailed like the vines of the bougainvillea: green sprouty fingers folding into colorful flowers, his words tumbling from one idea to the next beautiful reflection and thought on plants and growing.

He thumbed through his Instagram feeds showing us potters who specialize in bonsai containers, boutique bonsai stores in Florida, pictures of pretty plants he’d seen and snapped just because of their colors or something interesting about the way they looked.

beckyLemual

The purpose of bonsai, we learned was two-fold: beauty and appreciation of beauty for the viewer of the bonsai, and an exercise in effort, patience, and creative design by the grower. To start, one only needs a bit of material, a shoot, a seed, a small tree or shrub, and lots of patience over time.

It reminded me of community building work. To start, one only needs a bit of source material, an idea, a seedling if you will, a passion or interest. From there, the work continues over time, designing, pruning, growing.

training

We paused in front of the Texas Ebony. The tag read In Training Since 2008. I asked Lemual what “in training” meant and he explained that the bonsai is never finished. Because it is a living, growing thing, all trees are always in training, making small adjustments, cuts, and crafting a design over its lifetime.

Much like the Texas Ebony, I’ve also been in training since 2008 with much more growing, pruning, patience, and designing to do. Bonsai, like community building, is never a finished piece of work. Even though Becky is employed part-time as a data clerk at SAF-Holland, volunteers at GreenAcres once a week with the garden education team (logging the most volunteer hours of any volunteer in 2015), is on the Dirt Crew at the Civic Garden Center, is getting connected to Hamilton County Parks invasive removal species team, is a reoccurring guest (and potential future member) of the Monfort Heights / White Oak Ladies Garden Club, and considering joining the Greater Cincinnati Bonsai Society, the work of community building is never done.

Because we are living, growing things, we are always in training, making small adjustments, cuts, and crafting our design over our lifetime.

invasive

becky garden club

“I’d be curious to see what you’re doing in a few years.” There was a pause and a sort of knowing glance in my direction.  I sat in the passenger seat 24 weeks pregnant with baby #1. “Motherhood changes you,” he said.

I took offense to this, felt my face flush with annoyance, stuttered something unintelligible, and immediately began collecting facts for my case against this person.  This person who assumed I’d be less capable in my work once I became a mother, the tone implied (or the tone I perceived) was that I’d be less dedicated to my career once I saw how cute onesies could be on tiny bellies.  It felt as if this comment undermined my years of learning and work down to one assumption: that after a bit of motherhood, I’d probably take an easier route, a soft exit and leave the field altogether.  I’d abandon my career and stay home because babies, or perhaps work at a bank.

It’s been nearly 2 years since that sentence and it still bothers me.  Both from the perspective that I know I am a bad person for being such a hoarder of grudges, a habitual collector of cynical thoughts and from the perspective that perhaps I’ve interpreted the conversation wrong for the past 26 months.

So now, two years later, with two under two, and six weeks into maternity leave perhaps it’s the right time to reflect on that statement.

“Motherhood changes you.”

It’s made me softer in my approach with people.  I’ve actively worked on not immediately venting about a rude email from a service facilitator or a text message sent way too late from a parent.  I try to roll my eyes less, and breathe a bit more.  And while I’m softer with others, and I’m harder on myself, because motherhood changes you.  Every parent and especially mothers can relate to there not being enough time to get everything done.  (Whatever everything is…)  There isn’t enough time to accomplish this mystical everything, and there’s even less time to be bitter about emails or texts or a sentence that's pestered you for two years...

I have two visible and adorable onesie-clad reminders at home at how fast time moves, how quickly life passes, and by bedtime, there’s just not enough time left over to do the godforsaken dishes let alone to be angry.  There is certainly zero energy left to stoke the fires of annoyance throughout the night, to keep vigil the grudges.

Scientifically, it’s true.  The maternal brain is changed in complex neurological ways.  It is chemically wired to respond to the needs of another.  "Those maternal feelings of overwhelming love, fierce protectiveness, and constant worry begin with reactions in the brain." The brain becomes wired to love and care for another in ways you physically and neurologically were not able to before.  I am better at what I do because of this, because motherhood changes you.

I am so, so tired.  There are tiny hands smelling of peanut butter and blueberries and crayons and milk touching me all.the.time.  And cries and whimpers from one room while shouts of mama and giggles ricochet from another.

I am constantly multitasking while reminding myself, that for these few short weeks this is all I really need to accomplish.  Being present, being here.  Wiping little noses and butts endlessly and snuggling and cuddling, and absorbing on my never-clean-for-long shirt toddler tears of jealousy and newborn tears of frustration.

The fatigue of learning to be okay with just being with each other, day in and day out, and slowing down long enough to just be together with someone (even little someones) has made me better at my work.  I’m better at waiting while listening, and better at accepting some days are grand beautiful days and some days are “is this day over yet?” days.

I am working on being a better person in my life and not just a better staff in my work, because motherhood changes you.