Down 9-Up 10

By: Carol Combs

I want to start by sharing that I am by no means an expert when it comes to the game of football but –I am a fan–and part of a family of fans. I am just an Ohio girl, tried and true. And while sports were not the thing we did together as a family growing up, I was raised to support our hometown teams. So, for ME that means a lifelong commitment to the Cincinnati Reds and the Cincinnati Bengals.

17(ish) years ago, when I watched football, it was kind of painful (Bengals fans will understand) and it was always ALL about the score. I certainly wasn’t the fan I am now where Sundays during football season are meant for football and family. Yes, the score is important and yes, I keep track of where my Bengals are compared to my less favorite teams. But…I must admit I love a good story about a team and/or its athletes almost as much as I love it when the Bengals win or simply just take the field! We have some amazingly talented young men in the NFL right now and I (being the momma that I am) almost feel like I am watching a group of kids grow up before my eyes.

In the last two years, I have grown an immense appreciate for the physical ability these men have on the field and the trust they have in one another as a team. I remember watching the game on January 22, 2022- Bengals vs. Titans-It was a BIG game!

Within the first half of the game my favorite Quarterback Joe Burrow got sacked 5 times, that number would eventually turn into 9. In ONE GAME -Joe Burrow- got knocked down 9 times and you know what else he did? He GOT UP 10 TIMES! Spoiler alert the Bengals won that game (19-16…WHO-DEY).

Now you might be asking why have you chosen to focus on this aspect of your favorite QB when there are number of other great stats you could focus on when it comes to Burrow? The answer for me is simple. At a time…in life… when I was getting knocked down at least 9 times a day and having to get back up, I saw someone taking hit after hit after hit and getting back up! Joe Burrow took some pretty darn hard hits that day [and a few others]; we saw him get knocked down NINE times, get back up TEN times AND lead his team to a WIN! The Bengals walked off the field that day with a win, Joe probably walked away with a few aches and pains from all the sacks, and I “walked off” with something too…a new mantra that could not have come at a more perfect time, “Down 9-Up 10”.

I.AM.A.BREAST.CANCER.SURVIOR. As of August 24, 2022!

But on January 22, 2022, I was just past the halfway mark in my chemotherapy treatments where my body was being pumped full of some of the harshest drugs being used to kill the disease inside me. It taxed my mind, body, and spirit. And while I was pretty open with my cancer journey, only a small group of people seen the FULL extent to which treatments were impacting me during this time. There were days I couldn’t make it down our home hallway alone, which was a big shift from the active and busy life I had grown accustomed to living with my kids [and now] husband.

I recognized early on in my cancer journey, there were some parts of it, I had to do on my own.

I was committed to beating cancer which meant I had to give my body the things it needed-rest, food, family, and joy. It just so happened football was joyful, full of game day snacks, something I could do with family while resting, AND it could be done from the bed on days when that was the best I could do. My husband made (and continues to make) Football Sunday’s a full experience complete with Bengals decorations, food, and traditions. During that time, Football Sunday was something I could look forward to each week without stressing “my team” out.

At a time when my body was feeling completely broken and I was fighting like hell for my life, watching football reminded me of the amazing capabilities of our minds and bodies. Each Sunday I would watch the players run, jump, throw and catch a ball with such precision; while also taking some hard hits and trying to outrun/outplay the guy tasked with stopping him. I was in awe of all the plays where the physical demand and unbreakable spirit of the player shined through. “Down 9-Up 10.”

I imagine that much like me and “my team,” Burrow and the Bengals never took the field with the intention of having a “rough game” — but things happen– conditions change -sometimes rapidly – and we must pivot and adapt TOGETHER.  As the Quarterback of “my team,” it was hard to depend on others and not be able to show up in my traditional “Carol” way. I learned to trust my body and I learned that I had to trust my team; I had to trust my defensive line and my offensive line. I had to trust that no matter how many times I got knocked down, I would get back up….I had to trust that I would win… and I did!

I am new to the space of being a Breast Cancer Survivor and new to a few other spaces as well. I am learning that a healing journey –of any kind– can at times feel similar to the pain that you are trying to heal from- the things that drop you aren’t only the physical kind. There are good days and bad days, days where I get knocked down multiple times in a single day by fear, pain, grief, and uncertainty but I get back up.

Since January 22^nd, I have probably said out loud a thousand times “Down 9-Up 10” because “Down 9- Up 10,” doesn’t just apply to football, or cancer journeys, it applies to life. It isn’t about how many times you get knocked down but rather how many times you get up.

“Down 9 -Up 10.” A lesson from our very own Joe Burrow and our Cincinnati Bengals!

The Anonymous Local Shirk

They say to put your money where your mouth is.

I agree.

And there’s more. 

So much to touch, to hear, smell and see.

But my senses are trapped, here all alone,

with this phone and teevee.

I’m outraged, I’m worried.

Concern burns my brain.

Pain pervades a world gone insane. 

I gawk and squawk at things that shock on other people’s block.

Is any of this real?  I can’t feel the news. 

So what if I choose to only invest where I nest? 

Put my feet on my street and ignore the wars and scores and scars and far fears that feel near and rarely appear.

But I can’t bury my head in the sand. 

So what does that mean for the land where I stand?

Care only for this place and these people and love it.

Engaging the world, or my corner of it?

The anonymous local shirk. 

That’s the work. 

Making Room for New to Grow

By Carol Combs

About 12 years ago when my oldest was knee high to a grasshopper, we would walk out our front door and she would look across the street at the remnants of what used to be a bustling parking lot for the Hamilton Die-Cast Company. She would proudly say “look it’s Hamilton’s Rocky Top Mountain Park”. To her young eyes she seen the potential in what it could be, while us adults just seen it as a weedy overgrown dumping ground and a place where nothing good happened. During that time, the neighborhood we lived in was not known for anything good, it was the place you were told not to go after dark and you always locked your doors before turning onto East Ave, the main artery of the neighborhood. If you spoke to the residences of the neighborhood, they would tell you that “the city forgot about us here in this part of town,” and signs of that to be true showed in the road conditions, the abandoned spaces, and the constant flow of “bad” stories that came from the neighborhood. Little did I know that in the years to come, our family would help bring that space to life and begin shedding light on the gifts and goodness that lived within the neighborhood.

Fast forward to 2017, the neighborhood is still home to our family and we had grown by one; there is another knee-high to a grasshopper seeing the potential of that barren and abandoned space once known to her sister as “Hamilton’s Rocky Top Mountain Park”. My mentor once shared this story from “Walk Out, Walk On” (https://walkoutwalkon.net) about a small group of citizens who gathered in a space that was very much like the space we seen when we walked out our front door, a weedy overgrown dumping ground and a place where nothing good happened. In the story, each week a small group of citizens would gather, hold hands and commit to cleaning up “just the space where their hands made a circle”, as weeks went on more citizens joined and in the end the space was transformed into a beautiful, shared space where the community could come together, celebrate, and get to know one another. Having stepped into a new space where we as a family were beginning to look at life a little differently, explore our community, and discover our place of belonging, I too began to see that old parking lot through the eyes of my children and seeking out who might join US in transforming the space.

My family and I have been on an incredible journey the last 5 years, we have learned a lot about ourselves, we have all built valued roles in our community- each of us Carol, Briella, Grayson, and Charlie- have become named and known in Hamilton for the gifts we shared to bring what felt impossible to life in our neighborhood.  Over the course of 2 years, we activated our own social network and brought to life a space where people in a “forgotten neighborhood” could come together to celebrate and get to know one another. What once was a place where nothing good happened is now a place that is a source of good.  The space is ALIVE! One of my favorite things to do during that time was to go outside on the porch and listen to the kids playing and the adults enjoying each other’s company; the sounds of little legs sliding down the plastic slide, the sound of the kick against a soccer ball and the comradery that comes with the game, the squeak of the swings, swinging in unison, and I wouldn’t be doing the moments like this justice if I did not include the smell of the neighbors cooking tamales outside-this was community…our community. 

By me and the kids working alongside my mom and other members of our community, we had accomplished so much in a short amount of time.  Joining The Jefferson Alliance brought new energy not just to the neighborhood but to all of us and in the process, we gained some amazing people in our life; Pastor Aaron, Kathy, Woody, Linda, Frank, Brandon, Brooke, Peggy, our 17Strong family (and that is just naming a few). As a family, we tasked ourselves with the responsibility of caring for the park. Each morning mom would get up and walk the park, picking up trash and making sure it was safe for the day’s flow of neighborhood kids (including my three). At least once a month-sometimes more- the kids and I along with mom and our Jefferson Alliance/17Strong family, would hold an event. We joined forces and got involved in the Art in the Park movement in our city, hosting a Saturday morning craft once a month, we held a movie night, organized a Día de Los Muertos celebration with our neighbors, we would play ball with the kids, and supported those who wanted to use the space for events however we could. It was great to see Pastor Aaron and his parishioners activating the space too. What once was a barren dumping ground was alive with grass, trees, accessible playground equipment, a mural, and people from the community.

I had decided some time ago that Hamilton would always be home and I imagined that it would also always be in the Jefferson Neighborhood but just as the seasons of nature change, so does life. Two years ago I made the decision to move, we needed more space and the time was right. I had my eyes set on this house across from the park but the timing and the work needed was not in the stars and we landed in a brand-new neighborhood. Moving from the Jefferson neighborhood was a hard, I felt like I owed it to the people there to stay, I felt like if we left things would go back to what they use to be, I felt like those we had come to know and love in that neighborhood would feel like we betrayed our commitment to them and our community.  I know now that is not the case, I still know and love the people we met. In our absence, the activation of the park continued. Pastor Aaron and his group show up and care for the park and the people of the neighborhood. New neighbors stepped up to keep it clean when mom could not and each time, I go to visit, the park looks even more alive than my visit before. The work we did as a family brought to life so much for us and our neighborhood.  Our roots are deep here in Hamilton, our relationships within the community are even deeper, and new life grew because of our family’s discovery of the power of community, connection, and contribution.

Learn more about the Jefferson Neighborhood here: https://www.justhamilton.com/a-shared-passion/

The First Metric

“I’m not opposed to metrics. I just prefer the ones that reinforce my worldview.”

–Tim Vogt, October 4, 2022

There’s a term in the medical profession:  iatrogenic disease.

It’s the kind of malady that comes from an interaction with the medical system. Think of staph infections, bedsores, medication mix-ups or an unanticipated side effect of a procedure. 

Doctors, of course, take the “Hippocratic Oath,” swearing to “do no harm or injustice” to their patients.   Nurses make a similar commitment through “The Nightingale Pledge.”

But medicine and science is always evolving, so this vow is difficult to live up to without a crystal ball. 

For example, before human beings discovered germs, a common cause of death was from infections from the unwashed hands of physicians.  People believed that if the doctor was “a Gentleman,” there was no need to clean his hands before attending to a patient!

That belief had tragic consequences for many people. 

In our day program at Starfire, we had to track “Unusual Incidents” and send them to the local government every quarter.  This was a way of insuring we were reporting and addressing any trouble people with disabilities experienced in our programs. 

These “Unusual Incidents” could range from simple things – burns from handling a hot pan in a cooking class, tripping over a curb and scraping a knee – to more serious things like getting lost in a downtown crowd or reporting that two people with a disability had touched each other sexually and we couldn’t discern if consent was present. 

Sometimes, “Unusual Incidents” rose to the level of “Major Unusual Incidents,” such as serious reports of abuse, someone needing an ambulance after having a grand mal seizure, or in one case, a staff who neglected to do the Heimlich maneuver as someone in their care choked on a bit of their lunch, even though they’d been thoroughly trained on it.

We took these reports seriously and wrote up plans of correction. We talked with families and caregivers to fill them in on what happened. We revised policies to prevent any future repeats and disciplined staff under who’s watch it had occurred.

At the high point of our group-based programs, I calculated that we had one “Unusual Incident” for every 648 hours of service we provided over a three-year period.

Once we desegregated our programs and completely individualized our service, I tracked those numbers over another three years to see if there was a difference.

I found that number had dropped to one “Unusual Incident” every 2,764 service hours. 

That means that people with disabilities in our group-based settings were 400% more likely to experience trouble as a result of being in our group-based programs than they were when we supported them uniquely and individually.

It was easy to understand why.  Staff were managing groups of three to ten people with disabilities at a time in our groups.  They were distracted and lost count, or helping someone else while another person had trouble.

That’s an “iatrogenic” trouble.  It’s trouble that is caused by their involvement in our care systems.

When I share that data with other people, their eyes get wide and they seem to grasp the reality of the problems that face people with disabilities when they spend their days in groups together.

But this data doesn’t even scratch the surface of the danger our care systems inflict on people with disabilities.  The more we studied grouping effects of our system on people with disabilities, the more we came to understand the social violence our groups create for them.  They become segregated and isolated, and eventually lonely to the point of being nearly anonymous to anyone outside of the rotating care providers we hire and the other people with disabilities trapped in our care.

And that, of course, begets an entirely deeper danger:  No one is there to notice if someone is choking.  No one is there to check in on a person’s well-being in the service system, to look for abuse or neglect. 

And what about the psychological violence of never being known?

In short, this loneliness, in my experience, is the most worrisome iatrogenic disease people with disabilities contract from interacting with our system of care.

Every service our system offers purports to emanate from some good intention.  But more often than not, the help we offer starts in the wrong place, assuming that all people with disabilities are alike, and that the economic efficiency of grouping people with disabilities is a good thing to achieve. 

These institutional assumptions come from cultural assumptions and reinforce them, giving them validity and energy.  In turn, the cultural assumptions give validity and energy to our institutional assumptions. 

It’s a vicious cycle that no one seems able to interrupt at the scale of the problem.

Over my career, which has coincided with the emergence of “big data,” people have asked me for metrics, both as a way of holding Starfire accountable to the public and charitable funds it received, as well as a means of determining if the work we do is even effective. 

This hope for proof became especially critical as we started to understand a new way was necessary.  “How do you know it will work?” and “Why not do both?” were questions I felt pressure to answer in order to convince people that we were on the right path.  Never mind that they rarely held group-based models to as high a standard as they did us.

I do believe data points and metrics are important, but in reality, most proof points are too far downstream.

We have to start in a similar place to doctors in the 1800’s as they started to confront the reality of iatorogenic disease.  They had to look for a cause of trouble and found they were the culprit.  They had to start washing their hands.

We need to take a similar journey of accountability and introspection in our own system of non-profits and helping organizations. 

Instead of starting with data that proves what helps, maybe we should take a step back and start with eliminating what hurts. 

The first metric for our system to take stock of itself is best counted with a simple question:  Does my program ask people with disabilities to compromise their unique identities, personal purpose and sacred individuality as a condition of receiving the help I offer? 

If so, my program is part of a lifelong pattern that leads to terrible outcomes, and many violences, for the people I claim to care for. That’s an iatrogenic problem. 

If we don’t remove the harm that is baked into our service models and social assumptions, we will never be able to overcome that and get to a place of support and inclusion.

We must wash our hands, so to speak, of the segregation and group-based services we’ve been forcing upon people with disabilities.  If not, everything we try will fall short of what we hope. 

From there, we can start to take action.  If the good and important supports we offer – learning, building out personally meaningful days, getting a break from our families, engaging in important therapies, finding jobs or good places to live – originate in a group-based structure, we must take steps, either small or large, but absolutely forward, into more personalized iterations if we are to truly win a more inclusive future.

It won’t be easy, as “groups” are an entrenched social and organizational structure around disability.

But organizations are exploring new models.  Even State and Federal entities are encouraging this evolution in our field. 

It’s beautiful. 

And it’s slow work. 

Part of that slowness is because it is also difficult work.  We have to confront our own egos.  We have to find new ways of financially sustaining our organizations that don’t depend on segregated billing schemes.  We have to assume that each person with a disability fully belongs to their community, family and selves, rather than assuming we are the end point of care for them.  That hurts to consider, but it’s worth it.

It’s hard to let go of things we are comfortable with.  But what we have isn’t worth keeping, if we really take stock in how it is affecting the people it’s supposed to help.

Where we start from matters, and our social mindset around disability is in desperate need of a better starting point, one that will be a guiding light to our culture and enhance the belonging of all human beings, including people with disabilities.

Let’s start with the first metric, and see where we might get to from there.

The Four Commitments (Part Six: The Power of Intentionally Committing to Something New)

This the 6th part of a six-part series.  Link to Part 1 here. Link to Part 2 here. Link to Part 3 here. Link to Part 4 here. Links to Part 5 here.

Andrew Solomon, in searching for meaning in his own story, wrote a heck of a book, “Far From the Tree.”  In it, he studied various ways that children differed significantly from their parents.  His title cleverly plays on the old adage “The apple doesn’t fall from the tree,” and Solomon’s work looks at what happens when it does. 

He studied lots of examples, including ones related to disability.  There are more than a few good insights, and a few passages I would take issue with, but by and large, he offers that people had good lives if their parents found meaning in their child’s story. 

Parents who learned to integrate the difference of their child’s life from their own not only found ways to help their children live good lives, but also lived good lives themselves. 

Parents who resented the way their children showed up in the world experienced a lot of trouble, both for their children and for themselves. 

This is broad-brushing the book, of course, but it was one of the author’s primary insights after years of intense listening to the stories of countless people with disabilities and their families.

And it rhymes with what we’ve learned at Starfire, which, in essence, comes down to people finding common cause with each other. 

When we started playing around with our new ideas, what emerged were these really cool community projects.  They invited people into crossing over the barriers of their difference and working together to bring some new life to the world.

They were making meaning together, despite, and oftentimes, because of, their differences.  This had a bonding effect.  They saw each other as more alike, beyond the superficialities of demographics.  They were alike as human beings, sharing the spirit of creating a better world.

That’s what we invited families into and wondered if they might learn a similar lesson:  That their children are simply co-humans who they happen to be related to.  And what can co-humans do together?  Almost anything they imagine.

We’ve had a front row seat for how people have answered that question in beautiful ways for over a decade.  But it still feels countercultural, so it still needs serious intention and commitment if we’re going to get there.

Making these commitments asked families to give up a lot.  They had to think and act and relate in new ways. 

Asking them to give up the certainty of what the world told them about “disability” wasn’t easy, but when they did it, they found so many good surprises. 

Carol shared that “we are no longer ‘the family with a kid with a disability.’  We are ‘the family that does cool stuff.”  And that new identity included her son in it.  What a powerful shift for them all.

One mother discovered a neighborhood book club that she’d never known about.  Whether she was intentionally left out, or just so isolated, doing her project helped her grow her connections, and she ended up with a new set of connections with her neighbors.

Another family found that their project inspired their neighbors to reciprocate, and their social calendar started to fill up with parties and invitations….even during the pandemic! 

All of this goodness, and so much more, came as a result of the families who committed to trying another way.  That’s the power of intentional commitments.

But it’s tricky making a commitment.  It feels high stakes. 

One way we learned to lower the risk was to make the commitments small and temporary. 

The truth of the matter is that our commitments often are in conflict with each other. 

Each of us wants safety and security and stability in our life.  Each of us also want growth, new experiences and some level of adventure.  We call these “competing commitments,” and there is a power in naming them that way.  We can hold them both together.  We don’t have to relinquish one for another forever.

We can decide to go for safety one day, and take a risk the next.  Or we can lean toward stability in one aspect of our life, but take some risks in another.

Our “Four Commitments” compete with legitimate and important other commitments, which is why we limited how we apply them.  We only asked them to do it for this short time and only for the project they were working on.

The reality is that families do need services.  But services don’t bring community.

And families can garner some support from disability-centered programming.  But we know their child has many other aspects of their identity and giftedness to offer the world.

The Four Commitments helped families focus on new social connections and new stories, while they still maintained the supports of more traditional services.  They could step into new mindsets about their children, themselves and their neighbors while still navigating the culture around them that isn’t quite where we need it to be yet. 

Families had some space to explore something new by committing to it for a short time, in a limited fashion.

That gave them creative freedom to design their own unique project, including their own unique network of people, discovering their own meaning in their own story in their own way.

Starfire staff had been launching creative community projects for five years before we invited families to lead their own project.  When our staff did it, we could meet on a regular basis and tell them how to do the work.  They were employees, after all.  That’s one form of power.

But we didn’t have that kind of control over families, nor did we want it.  So we developed the Four Commitments as a way to give the families some guardrails for their efforts, should they choose to adopt them.  For every family that said “yes” to committing to a project, there were at least as many that said “no,” which was fine.  Commitments are chosen, after all.

In looking back, though, we came to see that the Four Commitments weren’t just for families.  They had emerged through our staff’s early efforts and grew into our organizational culture.  We had just never named them!

We’ve since found them to be helpful in all our efforts to innovate around inclusion, carving out a space for new kinds of action and energy.  Once that space is clear, it can be filled with the goodness of a family and community.

Focus on gifts.

Build something that is uniquely yours.

Find the free connections that community offers.

Look for joy.

See where it goes.

The Four Commitments (Part 5: The Fourth Commitment: Look For Joy)

This the 5th part of a six-part series.  Link to Part 1 here. Link to Part 2 here. Link to Part 3 here. Link to Part 4 here. Links to part 6 here.

Bridget has spent the past few years studying what is known in our field as “trauma informed care.” 

Simply put, she has learned that when bad things happen to us, especially as children, our brains grow in response to it, seeking out stability and safety.  Over time, we are wired to relate to ourselves and the world around us partially by the things that hurt us.  The more of these painful experiences we have, the more our behavior might show up as a problem, for us, and for other people.

Bridget first started studying it as a way to empathize with people, especially people with disabilities, who were labeled with “bad behavior.”  She learned powerful and important ways to understand what someone might have been through, and even better, learned how to relate to them and to create experiences with them that might help them heal.

It’s a rich, deep, and emerging field of understanding human beings.  All of us would benefit from learning more, in particular about resiliency and the kinds of things that help us integrate our painful histories and move forward in good health.

One day, Bridget showed me a list of “Traumatizing Events.”  The first half of the list was familiar to me, headed by the clinical term “Adverse Childhood Experiences” (known by the social service acronym as ACE Scores).  Things like “abusive parents,” or “food insecurity,” or “death of a family member” were on there.  “Drug abuse in the house,” “sexual assault,” and “family member in jail” were also listed. 

I wasn’t surprised.  These are horrible things for children to go through and I could easily see how any number or combination of those things could disrupt a kid’s development and lead to a tough future for them.

But that wasn’t what Bridget was showing me.

Below that chart was another chart:  “Adult Stressors.”

It was a list of experiences that caused trauma for adults.

I could have guessed the first few:

• Death of a spouse or child
• Incarceration of self or spouse
• Diagnosis with a terminal illness of self or spouse

But there, sitting near the top, below those horrible experiences, was something that stopped me in my tracks. 

• Birth of a child with a developmental disability.

My world was rocked.  Bridget and I looked at each other, but neither of us could speak.

We had both been working to advance inclusion of people with disabilities for 20 years at that point, and this was a new perspective we had not really considered.

At first, we were mad, and we wanted to reject it altogether.  But ignoring the reality of how the world sees “disability” has never been a strategy for us.  That’s dealing in fantasy, ignoring the real work of what we’re actually up against.

The more we thought about it, the more we knew that it was real.  Almost every single parent of a child with a disability we knew was in some kind of “special needs support group.”  Organizations offered trainings in “dealing with a diagnosis” and “coping with grief” of the birth of a child with a disability.

But even though we knew it was real, we knew we had to resist it.  We knew so many good people and we had spent decades helping discover and develop their gifts to offer the world.  And we saw evidence of ways their families’ and neighbors’ lives were better off because of their birth.

No, it wasn’t the birth of a baby with a disability that was causing the sadness.  What caused the sadness was a culture that made the lives of people with disabilities and their families hard.

That was the true source of trauma.  A culture that said your child didn’t belong, or that there was something so wrong about them that only experts would want to be around them, no one would ever want to hire them and they’d never have friends.

That story our society was telling about disability was the problem.

As we worked on developing the Four Commitments, we knew the story the world told about disability, and we knew that if we were going to take a step in a new direction, we needed to step away from the culture of commiseration that surrounded families of people with disabilities.

We had to step into joy.

It felt radical to write that word down, almost like it wasn’t allowed.  And it felt risky to name commiseration as something to turn away from, especially because we believe in empathy and embracing vulnerabilities as a way of gaining strength and relating to each other. 

But while it’s important for people to share shoulders to cry on, knowing the tears were misdirected toward a child with a disability was something we just couldn’t bear.  

So looking for and embracing joy became our 4^th and final commitment.  And it’s shown to be one of the most powerful. 

When we state it out loud and follow that with directing our sadness toward anti-disability culture, everyone in the room breathes easier.  Some people find it takes a load off of their heart, almost as if they knew there was something wrong about seeing their child as a problem. 

And that joy keeps growing.  Families of children with disabilities have found the joy of friends, allies, and co-conspirators who want the same kinds of communities they do.  They’ve discovered a new purpose in their family.  They’ve learned to see their children in a new way, and found a way to balance and channel their disappointment into action that brings a new energy.

The projects build new patterns and healing rhythms.  Their connections with others around positive experiences in their community helps remind all involved of the gift their lives are to each other, and living it out creates sense-embodied memories that last.

That’s the healing power of this commitment.  By looking for joy, and resisting the temptation to point our fingers at people with disabilities as the source of a family’s sadness, we are taking an important step toward social justice and building a more decent world.

We are noticing the role our culture plays in leaving people with disabilities out.  That places responsibility on all of shoulders, rather than sitting around blaming the victims for what’s happened to them.

And it elevates people with disabilities and their families from the role of “client” or “recipient of charity” or “problem” into the role of colleague.  They step into their rightful place of partner in healing the very culture that’s hurting them.

And how do we start to heal a traumatized culture?  The same way we start to heal a traumatized person:  new patterns over time, full of relationships, reflecting and affirming everyone’s strengths, with rich sensory experiences that give us moments and memories of the goodness of a connected life.

Sounds like Starfire community-building projects right?

The Four Commitments (Part 4: The Third Commitment: Find the Free Connections That Community Offers)

This the 4th part of a six-part series.  Link to Part 1 here. Link to Part 2 here. Link to Part 3 here. Link to Part 5 is here. Links to Part 6 is here.

If you gave me a million dollars, and I had to make a bet on whether the family of a person with a disability, or the person’s service workers, would still be around in 20 years, I’d put it all on the family.

And I’d win easily.

I could probably win even if I made the same bet on who would still be around in two years!

It’s just the nature of the service system.  Those of us working in it move in and out of jobs. 

During the summer of 2017, I started giving out project grants to 10 families. During the same summer, we hired four new employees to work as community connector staff. 

Within two years, all four of those connector staff had moved on to other jobs or different locales.  They were replaced with another 6 people over the past few years, all of whom have also since moved on from our payroll. 

All 10 families were still in the lives of their child with a disability.  And all 10 families are still connected to the people they met leading their projects and the values of community inclusion.  We hope the staff are still connected to those values, and they likely carry them with them, but there is no way of really knowing. 

I gave out a total of $30,000 to those first 10 families, along with another $60,000 over the next few years for a total of $90,000 invested in over 30 families. 

We paid those staff over $600,000 over the same timeframe.

That’s the reality.  Our system of services seems stable, but only in the same way “Wal-Mart” or “Coca-Cola” seems stable.  It’s a brand that we come to know.  But behind the brand is an ever-changing, morphing team of people, coming and going.  Good managers, bad managers. Hardworking committed employees and people just in it for the paycheck. 

That system of a steady brand works well for a product.  There is one good way to make Coca-Cola.  There is an easy, replicable system for running a successful Wal-Mart.

But that model isn’t up to the challenge when the product is “support for a human being,” as it is in so many of our social services. 

And yet, according to a recent study by the Kaiser Family Foundation, we are betting over $116 billion on that model to provide home and community based services to people with disabilities and our community’s elders.  And that doesn’t even count state, local and charitable funds!  I’m not sure, but guess that including those funds could push the bet to over $200 billion annually.

Imagine investing all that money and training and support in the longevity and love that a family offers.

Don’t get me wrong.  I believe in the power of good, well-paid, deeply trained support workers.  In fact, I’ve had a front row seat to the powerful work my colleagues at Starfire (and elsewhere) have done over the years.  Many of them had a deep commitment to the work and helped make beautiful things happen in peoples’ lives.  Especially when there was no family present to step up.

But as I write this, our field is experiencing what is being called a “workforce crisis.”  There aren’t enough people to work the jobs needed to support people, and there isn’t enough money to keep up with rising wages to remain competitive with other industries.  Some of this is a result of the pandemic.  Some of it is a result of failed immigration policies, or other forces of economy.

But those families weathered the pandemic.  And there’s no need to rely on immigrants to replace parents and siblings.  Just imagine what might be possible if we put those resources behind families.

Families are just a better bet.

I recently sat down with the mother of a woman with a disability.  We have known each other for decades, and she and her husband have always fought for their daughter to live a life outside of the one offered to her by the service system.  I admire them deeply, and have learned much from their example, so accepted her invitation to chat. 

When we sat down, she showed me the brochures of all the social services for people with disabilities she had been exploring.

“Tim,” she said, “We’re getting up in years and I need to start exploring what’s out there for our daughter.”

She told me about her other children and how they had offered to take in their sister if the time came when their parents couldn’t care for her.  I wasn’t surprised as they were simply following the beautiful path their parents had laid out over nearly 40 years.

“Are you taking them up on that offer?” I asked.

She winced. 

“I can’t,” she said.  “We can’t ask that of them.”

We talked more about her deep belief that none of these services were good enough for her daughter, and that all the best things in her daughter’s life were a result of being included – in school, in work, in the surrounding neighborhood.  We named all the people in their lives who were a regular part of her daughter’s life, and how much they meant to her. 

And then she said something that shocked me.

“I guess I just feel badly.  I thought over all these years, I would be able to come up with a plan for our daughter, to give to her siblings.”

For forty years, this mother had done everything she could to help their daughter live, work and play in the world as an ordinary, everyday person.  She and her husband had built a regular life for and with their daughter, not a “special-needs life,” surrounded by therapists and counselors and caseworkers and staff people.  It was a beautiful, connected and shared life that they had lived together.

And she didn’t think she had a plan!

“You did come up with a plan!” I said.  “You came up with the best plan I could ever imagine. You planned a life for your daughter that included her in the world.  And not only that, it’s stood the test of time for 40 years!”

It had already outlasted any other plan any social worker, myself included, could have ever imagined.  It had outlasted at least 125 of my colleagues at Starfire, and many hundreds of other staff at the other organizations her daughter was connected to.

The only thing her plan couldn’t outlast was time itself.

I admired that mother’s commitment.  I began to wonder if other parents making a similar commitment, even in just a small way, was a good thing to help them work outside the status quo of our systems and societal notions about disability.  Her daughter still attended Starfire programs, and still had various supports from the system, but through her commitment, she had carved out a life for their family that was completely and uniquely theirs.  It was sacred and beautiful.

It occurred to me that inviting her other children into the commitment and plan she had found so much meaning and satisfaction in might be a gift to them.  Maybe it could offer them something beyond the task of managing a rotating cast of social workers, which would always need doing, but could never bring them meaning and satisfaction.

“What if you handed that plan off to your other children?” I asked her.  “Tell them about why you’ve carried it out, how you think about it compared to other plans, and how it’s worked out for you?”

She wiped her eyes, and I wiped mine and she pledged to talk it over with her family.

I’m putting my money on that family.

So why don’t we bet on families in a bigger way?

When I started giving out project budgets, and paid families a stipend for managing the project, I had all these doubts in my head:  What if they run off with the money?   What if they blow it all at the liquor store?  What if they don’t do the project perfectly?

Those fears stopped me in my tracks and I almost never launched the program as a result.  The only thing that brought me confidence and clarity was that I was certain that all those 100+ people on our payroll had surely blown at least some of our money at the liquor store over the years!  And many of them stumbled and bumbled on their way to learning the work. So perfection, whether it be of moral expenditures or professional aptitude, was certainly not required.

Families often seem to sell themselves short. I think some of that comes from people like me in the service system.  I worry that sometimes we wield our “expertise,” our degrees, budgets and job titles, in a way that crowds out a family’s confidence in their own competence.

One dad once told me he feared his son was “unknowable and unlovable.”  He was working on developing a family project and was worried no one from his neighborhood could really connect with his family.

I told him he had evidence that citizens could come to know his son and care about and for him. 

“What evidence?” he asked. 

“You,” I told him.  “You know how to have meals with your son, how to go on vacations with him.  How to spend time with him.  How to worship with him and how to do chores with him.  And you were once a person like your neighbors, who didn’t know all of that.”

“But they don’t live with him,” he retorted. 

“True,” I said, “But all they need is time and touchpoints, like you, right?  It’s just not as intense of a timeframe like you had.  So we have to get started now so they can experience those things and grow in those ways.”

That father, along with his family, has done at least four community projects that I know of, likely more. And his son has some solid connections growing with neighbors and friends as a result.

Before the family projects, though, our staff did all of the work of a community project for families like his.  And when our staff left, as they inevitably did, they largely took all the fruits of those projects with them.

That’s the basis of the commitment to look for the free gifts of community, rather than hire a staff to do it for you.

Families have found neighbors they can count on.  And they get to keep those connections, for themselves and possibly for their children with disabilities. 

And even more importantly, by doing the projects themselves, they get to learn the lessons and strategies of being community builders.  They discover gifts of people they never knew before.  They get to learn how to depend on their community and be dependable for their community.  They get to work as a team with other people to create something new and enjoy the pride of having done it.

They get to live their lives in connection with others, rather than waiting on someone else to do it for them, which would never be possible anyway.

One of the first times I ever met John O’Brien in 2011, I presented him with some questions that had been bothering me and I wanted his thoughts on.

I offered him this “true or false” statement: “Families just want to be families, not warriors, so conversations with them about Social Role Valorization, Person-centered approaches, citizenship vs. clienthood, could be putting too much on them.”

I waited for him to say “true,” or “false,” but unsurprisingly, he answered with a clarity that I wrote down, word for word, and have never forgotten:

“If families delegate relationships for their children to the service system, they will always be disappointed.”

I originally made sense of that statement by assuming that the service system would just do a much worse job than families expected.  While that’s a reality, over the years, I’ve come to understand a deeper meaning in it.

Families who I’ve walked alongside as they do a community project, relating and celebrating, planning and playing with their neighbors, are never disappointed.

Sure by making the commitment to do it themselves, with their community, outside of services, they give up having others come up with ideas, make all the decisions and carry out the work.  That’s awfully convenient and terribly tempting.  A paid staff from the service system can shield a family from social rejection or disappointment.  But the choices we offer as a system are always the ones that work for our us:  within our budgets, during our work hours, and centered on our goals.

By doing it with their community, families get to create options beyond our programs, and they get to work on their own terms, in the way that works best for them.  It may not work as efficiently as hired help, but they get to own it.  And as families have kept at it, they’ve been surprised when people they never expected show up in their lives.

Even if the project goes sideways or changes, or even if they only get half the attendees they hoped for, they are always happy with their effort, and satisfied with what they learned on their journey, about themselves, about inclusion and their child, about their community.

So we ask families to make the commitment to do it themselves instead of delegating it out to a service system.

They end up getting to keep the treasures of their community and the fruits of their efforts all to themselves, and that makes them a stronger family. 

And that is always a good bet.

The Four Commitments (Part 3: The Second Commitment: Create Something That Belongs to You and Your Neighborhood)

This the 3rd part of a six-part series.  Link to Part 1 here. Link to Part 2 here. Link to Part 4 here. Link to Part 5 is here. Links to Part 6 is here.

As more and more families did projects, we got stronger around our “Four Commitments.”  We all tried them on, almost like we would a new jacket.  How did it feel?  How did it fit?  Did we prefer our old threads?

Families loved it, once they got going.

The problem for some, as it is when trying new things, was in breaking out of old patterns. 

One family who said “yes” to doing a Starfire project was struggling.  They kicked around dozens of ideas.  What if we turned the empty storefront across the street into a space where neighbors could tell stories together? What if we hosted an event at the local high school theater?  How about the basement of the apartment building down the street that hosts a neighborhood children’s summer camp?  What could we do there?

One day, as we huddled up for our monthly chat, they shared some exciting news.  They had landed on an idea!  They had talked to a bunch of neighbors, at my suggestion, and had heard a common refrain:  There’s no block party in our neighborhood! 

“What do you think?” I asked them.

“We like the idea,” the mother replied, “But we want something with more pizazz!”

They spent a few days thinking on it, and eventually, wisely decided to follow the energy of their community.

“Even though we aren’t all that passionate about a block party,” that mother said with a laugh, “We are passionate about being connected to our neighbors who are passionate about a block party!”

So it was on.

Over the coming months, they focused on planning the party.  They recruited neighbors to design flyers.  They sketched out the space and made lists of all they’d need to host it.  Things were humming along.  They and their neighbors were excited.  And then we ran into an unexpected snag: “who to invite.”

“Do we invite our friends who have children with disabilities?” they asked.

It was tricky.  This family was leading the way in many disability-centered organizations, so their network reflected that.

I was their “project mentor.”  And one of my responsibilities as a project mentor was to say things that I knew might be tough for them to hear. 

At the beginning of each project I helped mentor, I would tell each family “I’m on your side second.”  They would usually look at me, wondering what that meant, and I would explain that my role in helping them carry out this project was to be on their child with a disability’s side first.  That meant, I would explain, that sometimes their best interests and their child’s best interests were at odds, and I would do my best to advocate for their child’s interests.

This was one of those times. 

I knew that in all my efforts to help people build projects, this was one of the toughest.  Keeping it from becoming a “special needs” or “disability” event was critical.  Otherwise, it would just be more of the same, reinforcing the outdated and harmful societal notion that “all those disabled people” belonged together.

But intentionally not inviting people because they had a disability, or had a child with a disability, felt like we were violating the very core of inclusion.

And people would call me out on it.  Some called me “a discriminator.”  Others went as far as to say it was bigotry.  Those accusations always hurt, because I knew it was the furthest thing from the truth.

I struggled with how to help this family understand what was at stake if they took the easy way out.  I worried that I would offend them or hurt their feelings, or they’d think I was too radical and dismiss me.

But I knew the cost their child will pay if I didn’t say it.

So I took a deep breath and said, out loud, to that beautiful family “This might seem weird, but I have to say it,” and I told them the risks of including their “special needs network.”

“If you all decide to open this up to your friends with children with disabilities who don’t live here, who pays the price?” I asked them.

They sat there quietly, thinking it over.

“It won’t be me,” I told them.  “Or any of our Starfire staff. And it won’t be you. If a bunch of people with disabilities show up to your events, you’ll be just fine, for the most part.”

“Our daughter will pay the price,” they said. 

“Yes,” I responded.  “She will lose her chance to be known in this community on her own terms, and will, once again, be lumped in with ‘disability’.’”

They nodded their head.

“And,” I added, “The rest of us are asking her to pay that price just because it makes us uncomfortable to try another way.” 

“I got it,” said the mother, hopefully.  “We’ll say that anyone who lives in our neighborhood is welcome to attend.  That will at least help people know it’s only for people who live here.”

“Great idea,” the father said. “But what do we tell our friends who don’t live here and have children with disabilities? I’ve already mentioned this to a few of them and they said they’re planning on coming to support us.”

“My best idea,” I replied, “Is to tell them why you’re limiting it, and I think they’ll understand.  Offer to help them do a project for their family.  Tell them you’ll gladly not attend, but support them from behind the scenes, and ask they do the same for you.”

“I know it sucks,” I added, “But all families deserve to have their own unique, personal stories.  Including their family, too!”

It was tough.  Families with children with disabilities face a lot of social rejection.  That does two things, over time.  It orients them toward less painful options, like “special needs” events and programs.  It also makes them sensitive to including everyone, an effort to give the gift they wish they were given. 

And here I was asking them to take the more difficult path of risking the social rejection of a non-disability event.  Even worse, I was also asking them to ask other people who’d experienced the pain they’d experienced to not attend.  We all felt horrible, but knew giving up the easier path was worth it to live up to our commitment to make this uniquely for their daughter.

“Will you come to our event?” they asked me.

“No,” I told them.  “As much as I want to be there, soaking up the goodness, I don’t live in your neighborhood.  My only connection to your family is through disability.  Through Starfire.  I don’t want to be the weird stranger taking the spotlight, or even worse, spotlighting your daughter’s disability as the purpose of the event when people ask me who I am and how I know you.”

The next time we met, they had told me about their conversations uninviting their friends who had children with disabilities.  One friend understood completely and hugged them and told them she understood.  The other friend told them he was slightly offended. He insisted that he would still be joining with his daughter with a disability.  The family, understandably, didn’t push back much.

“But you know what’s even weirder?” the mom asked.  “We are getting RSVP’s to our event from families with children with disabilities that we don’t even know!”

It was then that we came to understand the power of the disability-social-media-algorithm.  They had posted it to their social media accounts.  Because they’d spent a lot of time sharing about disability and disability-based organizations, and were connected online to people like me, their posts got shared to other people who were in the same algorithm!

They had worked hard to keep their crowd hyper-local.  They personally handed out flyers, made a sign at the location of the Block Party, and sent texts to their neighbors.  But now all of that was drowned out by what the social media algorithms thought was most significant about their family: disability.

There was no stopping a group home employee from dropping off a van full of people with disabilities at their next event.  What might happen if it gets shared to a regional disability email list as an inclusive event for families with children with disabilities?  It was overwhelming to consider how fast the purpose of the event, to connect neighbors to each other, could get out of hand.

It was an epiphany to me, and I pledged then and there to never share anything on social media about a family’s project.  My network, after all, was also part of that disability algorithm.

“We did have one awkward conversation,” the mother added.  “We were attending an annual conference about my daughter’s disability, and the conference planners shared our project as a hopeful story for other families.  Right after that, a family from Cleveland, who’s son has the same disability as our daughter, came up and told us they’d be coming to the block party!”

“Oh no,” I whispered, and buried my head in my hand.

“Don’t worry, though,” she laughed.  “I had the perfect response.  I said ‘Sorry, our party is only for our neighborhood. But if you want, we’ll help you plan a block party in your neighborhood!’”

“How’d they take it?” I asked.

“Not well,” she said. “But it was quick and we just went about our day.  I think we’re starting to get our courage up around all of this.”

After their block party, they came to see what I meant.  People from the neighborhood met their daughter for the first time, getting to know her name and discovering that being around her was easy and doable.  They loved it and started planning the next one immediately.

The one hiccup came when their friends with a child with a disability followed through on their promise to attend the block party, even though they didn’t live in the neighborhood, and even though they had been asked not to join.

Some neighbors assumed that the two young people with disabilities were best friends.  Some of them asked if the block party was a fundraiser for disability organizations.  At one point, the two young people were at a table, together, by themselves. The family noticed all this and reflected later on it.

“It was a reminder of why we’re doing this,” the family reflected the next time we met.  “We are just getting started building a new kind of network for our daughter.  One that is just for her, and us, outside of disability.”

I was so impressed with the strength of that family.  They showed the power of families to lead the way in inclusion, by taking the hard steps of walking with their commitment to host a project that was unique to their daughter’s life.

It was a helpful, and beautiful reminder of the level of intention it takes to try and create a new story, and build a new kind of future, for families like theirs.

The Four Commitments (Part 2: The First Commitment: Discover Your Community’s Gifts)

This the 2nd part of a six-part series.  Link to Part 1 here. Link to Part 3 is here. Link to Part 4 is here. Link to Part 5 is here. Links to Part 6 is here.

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.”

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.”

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. 

The Four Commitments (Part 1: A Structure for Innovation)

This is the 1st part of a six-part series.  Link to Part 2 is here. Link to Part 3 is here. Link to Part 4 is here. Link to Part 5 is here. Links to Part 6 is here.

When I stepped away in 2017 as Starfire’s Executive Director, I stepped into a request from the Board to focus on “Scale.”  It’s such a tricky thing for our field, as most of our “scale” shows up as segregated and congregated programs.  Our big building full of 100+ people with developmental disabilities was great at answering scale.  All we needed was more buildings and vans and we could double or triple that!

But I was bothered by the troubling impact that this kind of “grouping” had on the lives of each individual person with a disability, so that was no way forward.  Fortunately, I worked for an organization that had left that model, and the mindsets that created it, in the past.

As I puzzled over it, I had some solid inspiration. 

Starfire’s community building projects were a creative, collaborative and dignified step forward.  Each person that completed one, with the support of our staff and people from their neighborhood, gained, on average, four new people in their life.  Even better, they were fun and raised everyone’s imagination about what a person with a disability could do in their community.

But as beautiful as the projects were, they still had one aspect about them that was bothering me.  They relied on paid staff to make them happen.

Many of the paid staff did amazing work, as you can see on our YouTube page. But they still left.  And when they left, they took all the values, intention, learning and experience with them.

I was also inspired by some conversations I had with Jesús Gerena, who was running an innovative program in Oakland, California called “Family Independence Initiative” (now called UpTogether).  They were paying families in their programs so set their own goals and manage their own lives.  And they were using the money they had previously paid a social worker to oversee families.  It was brilliant and equitable.  It felt like it belonged more to the future than the past, and that’s what I was looking for.

I just needed a few families who might be willing to try it out with me. 

One day, I was invited to meet with a group that included a few parents of children with disabilities.  The group was spending a year together, learning about the service system their child would one day come to depend on.

I explained the “Who’s In Your Life?” pattern.  I also showed some hopeful examples we had discovered of ways to work outside the pattern.  People had a few questions, and I answered them, and called it a day.

A few days later, I got an email from Carol Combs, who I had never met but had been in that session.  She told me that she was the mother of a child with a disability, and said ““I will not lie….the concept you presented blew my mind and has left me with a million questions and the desire to learn more.”

By that time, I’d learned that the best way to support people’s learning was to give them a few options to choose from.  We all need to own our own learning, if we are going to embrace it, after all.

We happened to be hosting John O’Brien in the coming weeks, and I thought that might be a good place to start, so I sent the invitation to Carol.  I admit, I am usually pessimistic that people will show up.

But Carol, to her everlasting credit, did show up.

Afterward, she told me she had even more questions, and wanted to grab coffee.

A week or so later, we huddled around a Café in my hometown and had a terrific conversation.  As we left, I told Carol about an idea I had to give families a budget to run their own projects, and she said she was in, if it happened.

In the next few weeks, Starfire committed the total budget equivalent of one staff’s salary to divvy out amongst 10 families of children with disabilities.  I was excited about the possibilities. 

I knew where I could turn first.  Carol Combs.

Over four years, we would launch dozens of “Family Projects” all over the city, and a few scattered around the country.  Some of them even successfully launched in the midst of the pandemic!  They were powerful examples of the power of collaboration between families, neighbors, and a creative organization like Starfire.

But in order to get there, I had to figure out one major problem:

How would I prevent families from reverting back to culturally dominant ideas around their child with a disability?

It’s not like I had the power to prevent them from doing that, but this opportunity to innovate felt too sacred to allow it to replicate the patterns that led families into the loneliness and segregated options of the past.

The money I was entrusted with represented Starfire’s creative hopes, which were funded by the big hearts and future dreams of its donors.  I had to be a good steward of these funds, or this opportunity would slip away, and we’d all be left jaded.

I figured that in order to be successful, I’d need to give the families that said “yes” the very same resources and support I had given our staff for all of those years.  That meant I had to pay them for their work, give them a budget to work with, plan regular time to learn Starfire’s values (and unlearn the unhelpful habits our society had fallen into around “disability”), and give them some kind of structure or parameters for their efforts.

The money was easy to figure out, but took some courage to implement.  We gave each family a couple hundred dollars to say “yes” to starting a project, and promised another couple hundred once they completed it.  It was strange to think of giving families money, but my learning from the success of Jesús Gerena’s Family Independence Initiative, which was being expanded to Cincinnati and embraced by our funding community gave us courage. 

I remember us asking various versions of wild questions: “What will they spend it on?  What if they spend it gambling or on beer?”  Then we realized we paid our staff tens of thousands of dollars each year and it was possible that they were, in fact, spending it on gambling and alcohol! 

Giving them a budget was a little trickier.  We wanted to give each family at least $1,000 in a project budget.  But we needed receipts for their project expenses or that would be counted as income and they’d lose a chunk to paying taxes on it.  So we made sure that families could easily get reimbursed up to the limits of their budgets.

I then decided to set up a set time each month to meet with each family.  I made it at their convenience.  Sometimes we met in the early morning or at the end of a workday.  It depended on each family’s schedule.  At each meeting, I’d bring them some article or bit of reading that related to Starfire’s values, and we’d talk about how their project was going.

Carol was the first family I started meeting with, so she helped me develop these patterns early on.  She’d tell me which articles were helpful, and which ones weren’t.  I’d send her links to videos and invitations to events and we’d chat afterward about whether they were worth her time.  Over the first few months, we’d developed a sort of curriculum for a family wanting to learn how to do a Starfire Project.

All of that was exciting, but the toughest part of every conversation I had with families was helping them let go of old mindsets and make space for new ones. 

They kept wanting to go back to old ideas:  “What if we launched a special needs art party?…Can I use my funds to hire Starfire to do our project?…Can we create a Disability Parents Support Group?”

And they desperately wanted to get together with the other families.  “Can we attend and support their party?  Can I send it out to my Disability Moms Group?”

I knew that wasn’t the way forward.  I had already helped our staff navigate that, though I had never put it down in writing.

What families needed was structure. 

I could understand that.  We all need some kind of structure.  But my experience in re-imagining Starfire’s programs had taught me a lot about structure. 

Sure it was solid to have a building where all the people with disabilities went.  And we had calendars and schedules that detailed out who was going where and with whom.  We had certain days people came and other days they didn’t.  We had staff who were assigned to certain roles and responsibilities. All of that was a form of structure that had our old programs running like a well-oiled machine.  Everyone knew where they fit in and how and what to expect.

But what I came to understand about that kind of structure was that even though it provided certainty, it provided the kind of certainty that a prison provides.  It limited what was possible for people.

As I learned new values (the Five Valued Experiences, Asset Based Community Development, Social Role Valorization and Person-Centered Planning, to name a few), I felt more and more like our old structure was unnecessary.  Those values provided a new kind of solidity and structure.  In fact, they came to feel more stable to me the more I practiced them. 

I had a hard time explaining this experience, and one day, got some help from Mary Pierce Brosmer, founder of one of Cincinnati’s best organizations, Women Writing for (a) Change.

Mary described her concept of “the Conscious Container.”  She started by describing how most structure was like our old programs, top down and rigid, inflicted upon people at the bottom.  She held her hand, fingers down and spread out, in a way that created a set of prison bars.  That felt familiar to me.

But, she explained as she shifted her hand palm up, fingers together creating a shape like an empty cup, a bowl is just as solid as prison bars.  It holds anything in any shape without restricting or limiting the thing.  It can grow or move out of the bowl in whatever way or shape it wanted.

This was how “values” can shape a structure, she explained. 

That was so helpful to me.  It was the perfect metaphor and rhymed with my own experience, and I started investing in values:  We ramped up our trainings, we infused them into our metrics and meetings.  Those values carried us through Starfire’s entire organizational shift.  And they still remain strong and relevant over a decade later.

As I thought about structure for the Family Projects, I wanted to create shortcuts to the values that inspired Starfire, so they could get started quickly.  I knew I didn’t have the time with them like I did with the staff on our payroll.

So before one of my first meetings with Carol, I quickly wrote down “Four Rules” that I thought might help give structure to her Family Project:

• You can’t do anything that focuses on disability.
• You can’t make it a “special needs event” that brings people with disabilities together.
• You can’t use it to purchase disability services.
• You can’t make it a special needs support group.

I proudly read them to Carol, and she looked at me awkwardly.

“I get it, Tim,” she said.  “But I thought this was supposed to be about liberating families like ours from having to be told what to do by a social worker like you.  I don’t need more rules, especially not from Starfire.  It all feels so negative.”

I was stunned.  And impressed.  And a little embarrassed.  Here I was being called out, rightly so, for trying to inflict the “conscious container” in a top-down fashion!  Mary would have been proud of Carol, and would have likely shook her head and laughed with me.

Carol and I sat there, poring over my list.  We started playing around with it. 

“What are the opposites of these rules?” she asked out loud. 

We made a new list:

• You can’t do anything that focuses on disability.  Focus on gifts.
• You can’t make it a “special needs event” that brings people with disabilities together. Build something that is uniquely yours.
• You can’t use it to purchase disability services. Find the free connections that community offers.
• You can’t make it a special needs support group. Look for joy.

We stared at it.  It felt like it was a pretty good list.  And it felt so much better inverted toward these positive aspirations.

“It needs a new title,” Carol said, crossing out my “Four Rules” headline.

“What about “commitment?” I asked her.  A commitment is almost the same as a rule.  It eliminates certain possibilities.  Like marriage vows, or a new diet, or taking on new responsibilities.  But it originates from yourself, of your own volition.  It’s not required or forced upon you.  You choose it.

“Could we ask families to make these ‘Four Commitments?’” I asked Carol.

“I’ll make these Four Commitments right now,” Carol said laughing.

After we agreed that we were close to the right words, we started thinking about how to communicate these to families. 

We wouldn’t ask them to make these Four Commitments for the rest of their life.  These were just temporary commitments they would make for their year-long project. 

We just wanted them to try it out and see what happened.  Maybe it would be fun one-off experience for them.  At worst, they walked away with some money for their trouble.

And we would make sure that we told families we didn’t care what they did with the rest of their time.  If they wanted to spend the rest of their time in special needs support groups, surrounded by disability services, and hanging out with other families who had members with disabilities, that was fine.  It wasn’t fair of us to ask anyone to give any of those familiar, comfortable things up, and those aspects of our life weren’t any of our business, literally and figuratively.

It seemed fair to ask them to make these commitments because they were using Starfire’s money. 

And we knew there was the potential they’d discover what we had discovered:  there was more to life than what the service system was offering.

Carol’s notes around our development of the Four Commitments