Words (and actions) of Welcome

Guest post by Kathleen Cail, mother and activist

“It is great to have Grace in the choir… We are happy to have her.”

—Michelle Markert, Choir Director at St. Anthony parish


Grace showed up to her first church choir rehearsal last Wednesday evening. It was a cold evening in Madisonville and I would rather have stayed in for the night, but Grace was going to be part of the adult choir, at St. Anthony’s. She was excited and nervous. We arrived early so the choir director could listen to Grace sing and figure out her voice for placement—soprano or alto. When we arrived, people immediately came over to Grace to welcome her and help her get her walker up the steps to the alter. That is usually my job. Sometimes it is my job because I have always done it and just do it. Sometimes it is my job, because no one thinks to help and Grace doesn’t ask anyone but me.

When we joined St. Anthony Parish, at the end of summer, I knew immediately, that this was a community of people who accepted each other and welcomed people with open arms. I felt a sense of safety here- safety to try building connections for Grace and for our family. Shortly after we joined the parish, it was time to sign up for various roles in the parish. Grace was all about this. She wanted to be a server or sing in the choir. The pastor was completely open to Grace being a server. The only problem was that servers do a lot of standing and some walking across the alter. This was going to be tough for Grace. I put the kibosh on being a server, much to her disappointment and irritation with me. However, I suggested she try the choir. When Grace got around to asking, the choir was well into rehearsals for Christmas, so the director invited Grace to start after the new year.

I returned to St. Anthony, to pick up Grace after rehearsal. The choir was still singing, so I sat in a pew waiting for her. When practice was finished, I noticed that Grace was sitting next to an older woman and they were talking and going through a binder. Once Grace got up, another woman came over to help Grace get her walker down the steps. Grace was over the moon. She loved rehearsal (2 hours), was going to sing alto, she had met a lovely woman who helped her put her music binder together, and couldn’t wait to sing at Mass.

Sunday morning arrived and I went upstairs to find Grace awake and reading. I was surprised not to have to wake her. She told me that she was so excited to sing at Mass that she couldn’t go back to sleep. Jeff took Grace to Mass early for additional rehearsal. Partway through mass, Malachi, a man I have come to know through a book group at St. Anthony, turned to me and asked, “Is that Grace up there in the choir?” Yes it is. As we left mass, other people approached Grace telling her how happy they were to see her in the choir.

We have taken a step. Grace is seen, she is contributing, she is connecting with other people. It is a small step, but Grace feels valued and choir gives her a valued role.

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From the Archives: Perspective

cincibility archive

Originally published January 8, 2014
As we think about a new year, resolutions, and new perspectives, I thought I would share this folk tale about worlds.

A Folk Tale About Worlds —reposted from Momastery.com

A traveler came upon an old farmer hoeing in his field beside the road. Eager to rest his feet, the wanderer hailed the countryman, who seemed happy enough to straighten his back and talk for a moment.

“What sort of people live in the next town?” asked the stranger.

“What were the people like where you’ve come from?” replied the farmer, answering the question with another question.

“They were a bad lot. Troublemakers all, and lazy too. The most selfish people in the world, and not a one of them to be trusted. I’m happy to be leaving the scoundrels.”

“Is that so?” replied the old farmer. “Well, I’m afraid that you’ll find the same sort in the next town.”

Disappointed, the traveler trudged on his way, and the farmer returned to his work. Some time later another stranger, coming from the same direction, hailed the farmer, and they stopped to talk.

“What sort of people live in the next town?” he asked. “What were the people like where you’ve come from?” replied the farmer once again.

“They were the best people in the world. Hard working, honest, and friendly. I’m sorry to be leaving them.”

“Fear not,” said the farmer. “You’ll find the same sort in the next town.”

How does your perspective affect the way you react to situations?
What are you hoping to think differently about this year?
What negative feelings are you leaving behind in 2015*?

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2015 in review

The Cincibility 2015 annual report.  Thanks for a great year of reflection, learning, and dialogue.  Here’s to more conversation in 2016!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 13,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 5 sold-out performances for that many people to see it.

Click here to see the complete report.

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Getting unstuck from “successful outcomes” (Starfire’s journey… Part Two)

Getting “unstuck” from our previous work required loads of reflection (part one). And along the way, our transformation emerged. In bits and pieces, elements of our new support model grew out of the design thinking process: empathize, define, ideate, prototype, test, repeat. Empathizing with parents was one of our most valuable lessens. After 20 years of “successful” outcomes for people with developmental disabilities, parents, who had also aged with us as we served their son or daughter over the years, were asking, “What’s next?”

“Who is going to care for my child after I’m gone?,” parents asked.

I recently sat in on a support meeting with my friend living with disabilities – and when the topic of “employment” came up it was explained to be an “initiative” by Governor Kasich:

“…to ensure that all people find a place in community through employment or volunteering- no matter how severe their disability.”

I was SO excited to hear this other disability support agency say the words “find a place in community”– it was a departure from the typical conversations spent discussing my friend’s “behaviors” or eating habits. But where the conversation led from there crushed any new momentum that could have been built from this initiative’s true intentions. Instead, staff began offering suggestions for how she could keep doing what she’s already doing – but have it appear like employment. So the day program she goes to said she could start going on day trips to volunteer in groups of other people with disabilities – calling this “career discovery.” The other day program she attends said they have office tasks around their facility, like shredding and tidying up that they can start paying her for, which will fulfill what technically it means to be “employed.” I want to be totally transparent about these workarounds because they are rampant in the disability service system- and because they are happening in part as a result of a penchant to measure for successful outcomes. Yet they don’t get people anywhere new, and they don’t bring anyone closer to success, at least not in the way most people define the term.

Had I been in that meeting and not known any other way to help my friend “find her place in the community” besides just maintaining business as usual and not upsetting the status quo, I would have left feeling defeated, angry, and spent. That was how I used to leave those meetings, before I started working at Starfire. But Starfire has given me hope as an advocate that my friend, as a person with developmental disabilities, isn’t trapped in a life no one wants. That’s because we know (and openly will say) that even in the best case scenario, propping up the status quo in disability supports is only getting people more stuck in their label of “disability,” and inching us away from any type of meaningful work.

Starfire’s work is worth working for because it seeks ways to connect people with developmental disabilities to positions that interest them, at places where they truly belong.  That’s why our model is so different than most other organizations supporting people with developmental disabilities. We aren’t just after the results. What we are after is one day being able to answer that question so many parents have on their minds, by seeking out those people who might be the answer. We aren’t going to accelerate our goals and outcomes – and in turn leave behind the people with developmental disabilities. We will go at the pace of each person we support, individually.

By choosing not to serve for outcomes, we actually started to serve people with developmental disabilities, and this meant a lot about our work changed for good. It meant Starfire stopped measuring people with developmental disabilities’ “social life skills,” and started measuring whether or not a person has a social life – and how that affects their well-being, their opportunities, their lives, and our communities. It meant we couldn’t just check off boxes anymore. So we stopped measuring things like does a person make “eye-contact” – because we know that checkboxes like this do not help staff understand their work –and they don’t determine what a good life really is. Instead, what we measured had to be weighed on the scale of how well connected our members are, and how well we are doing at navigating and securing meaningful ways for them to contribute in the community. And finally, it meant staff needed to see themselves not as teachers of people with developmental disabilities, but as models of inclusion for the community –so that ordinary citizens can begin to understand what it looks like to love and include every person “as-is,” and let go of our desire to “fix.”

Ic_check_box_outline_blank_48px.svg Adequate

Ic_check_box_outline_blank_48px.svg  Inadequate

check markMessy, serendipitous, risky, gradual

Tools developed by social inclusion leaders and researchers help us track change in a person’s social network, participation in the community, and well-being over time. I’d love to share them with you if you’re interested. Our staff, the member, and their family come together bi-annually to complete these instruments, which helps to educate families on our process so they can carry the work forward with us. We have been careful in our phrasing and language as well- to avoid any inadvertent devaluation through data collection.

All of this isn’t happening overnight. But when it is done in tandem with meaningful outcome measurement, the hard work can be visibly proven to pay off. Below is an graphic representation of a conversation our staff had around our data outcome system. On the left are the stories about data they are letting go of – that numbers are used for compliance and building false narratives. On the right are the stories they are letting emerge: that data can validate the small victories of our work, honor the struggle along the way, and help us claim our success. In that way – data can be freeing.

U Graphic

Starfire’s staff conversation around data

Today, we can say we are over half-way through our transformation from an organization that groups people into a one-size fits all service, to one that works closely with one person and their family at a time to accomplish together sustainable and personalized impact.

Today we can say we are changing lives, measurably.

Not only that, but our staff’s ability to do their job well, and family’s understanding of what we are trying to accomplish with their son or daughter is becoming clearer as we edge toward the future. On average, we have seen 75% of the people we’ve served in this new way increase their social networks and community participation during their time with us. And we are just getting started.

To do this job of outcome measurement for Starfire the way Tim has asked of me, he suggested early on that I tattoo this quote on the back of my eyelids:

I’m not opposed to success. I just think we should accept it only if it is a byproduct of our fidelity. If our primary concern is results, we will choose to work only with those who give us good ones.”   -Fr. Greg Boyle

Starfire got unstuck from what looked like successful outcomes – and that freed us up to do work that was true to our values. We saw the way that good numbers and good results can have the potential for harm. We know that when the system is detached, unaware, and devaluing of the people being counted numbers can be used to serve the system. It’s all of our responsibility to know this, and to question the data being shared. Not just so that we can know where our money is being spent, but so we can actually strive to make changes in people’s lives.


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Getting unstuck from “successful outcomes” (our non-profit’s journey…Part 1)

When I applied for my job at Starfire, we were at the tail end of forming our new Strategic Plan and Tim was in search of someone who could develop outcome measures during the organization’s impending transformation. Being that this was my first experience with any type of outcome collection, it worked in my favor that he wasn’t asking me to come with all the answers. Instead, he wanted me to take a back seat, so that eventually I might “draw out” measurements that would be both respectful of the people we serve, while honoring the impact we make. Leaning on my background in Anthropology, I started by interviewing key people, taking lots of ethnographic notes, and immersing myself in the patterns at play.

“…Someone who has an ability to listen, support and appreciate the stories we bring and draw out the measurements that may be hidden in the narrative side of our work.” -Tim Vogt, email to me in 2011

At that time, Starfire’s building was buzzing. Morning and night, it could be seen as the premier “hub” in the city for people with developmental disabilities to access social activities. At our height, we offered a calendar of 100 social outings per month for 500 people. Our vans could be seen around the city, driving groups of 10 or so people with developmental disabilities, along with a staff and a volunteer to events such as Red’s games, out to eat, or volunteering. Our day programs were at capacity, where during the week people would come to Starfire to learn “life skills” such as cooking or creative writing, or go on “day trips.”

We measured our impact using tools developed in partnership with a local university — as well as our own surveys. The Life Skills Assessment measured what “life skills” our members were capable of in order to make them more independent. Staff took hours to complete this assessment for each person. They poured over a list of over 200 skills and decided who was capable of what – from making the bed in the morning, to giving a proper handshake. With a list this extensive, there was admittedly quite a bit of guesswork involved. Some skills didn’t even seem relevant, like tying your own shoe (velcro, anyone?), or knowing where the nearest post office was (I can’t tell you the last time I mailed anything from my neighborhood USPS).

In addition, a survey by staff was completed after each outing activity. These forms assessed how much a staff thought a person “participated” in the activity –one of the questions being a checkbox yes/no for “eye contact.” Finally, a survey was sent to parents and caregivers each year that rated on a 5 point scale how well they agreed with statements pertaining to their son, daughter, or client’s social life.

“Starfire Member is less lonely or isolated because of his/her involvement with Starfire (circle one)  1   2    3   4   5”

Across the board, these assessments were done behind closed-doors, with staff cramming the assessments in a couple of weeks before they were reported on, or filling them out at the end of their shift in a hurry. Parents filled out their surveys at home and mailed them back to us, but little was communicated above and beyond the survey completion.

And in the end, our outcomes painted a pretty nice picture. Not only were we popular among families, but we were also kicking-ass at skill development. The numbers affirmed the work we were doing was impactful. No one was saying otherwise.

That was our story.

Before we realized the power of outcomes, it wasn’t clear to us how our 100% skill increases and 99% satisfaction rates from parents were getting us “stuck” in a mode of operation that wasn’t actually impacting people’s lives the way we hoped it was. As a result, our outcomes served the system, defending and propping up an outdated model of support for people with developmental disabilities. The unintended consequence of our “success” was that it masked, or at least completely missed, the real problem and issues at stake in the lives of people with developmental disabilities.

Statistics painted a picture for part of what was missing. People with developmental disabilities face an unemployment rate of 83%, a poverty rate 15% higher than those with no disabilities, and experience a rate of violent crime 3 times that of the general population. And while our organizational data wasn’t helpful in revealing these facts, our stories were. After 20 years of good work and “successful outcomes”… these “statistics” were people we knew well.

To be fair, at this point our data did teach us one thing: that what we were measuring was not congruent with meaningful impact. We knew people who were being prostituted, jailed, abused by caregivers, people who didn’t even attempt to join the workforce and who were chronically depressed, anxious, and stressed. The common denominator in all of these stories wasn’t that they weren’t participating in enough fun activities, or learning the right amount of skills, or even that they all live with disability. What spanned across all of these stories, then and now, is the sheer isolation that people with developmental disabilities face over a lifetime.

Starfire, being the “hub” that is was, worked to group all people with disabilities into one place – separate and set apart from the ordinary activities of community life. We had effectively created a proxy for what being in community might feel like, but without the true benefits that actually belonging in the community gives. We knew at that point that if we were going to change their condition of social isolation, then we had to stop sending the message that people with developmental disabilities belong “with their own kind,” or in special groups, separate from the rest of community. Instead, we had to re-design and innovate our model so that it would work first to open the hearts and minds of people in the community and begin to tell a different story than “disability”…

(p.s. here’s a helpful article from Harvard Family Research Project about slowing down to get to the right kind of evaluation…http://bit.ly/1Ma6eoN )

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A Future Worth Working For

…Wow… with over 11,000 views and 80+ shares of our newsletter in a matter of 24 hours, we’re grateful for everyone’s expressed concern and support. Keep sharing, and thank you for building the future with us! 

Starfire’s November Update | A Future Worth Working For 

Two months from now, Starfire will lose $83,000 per year in funding. United Way, a long time partner, explained that we had “excellent” outcomes, “excellent” innovation and we are “setting the pace for the future of disability work.” But our work “doesn’t align” with their Bold Goals, so this leaves them with the decision to end their support. The news caught us by surprise and left us with a lot of questions.

Most importantly, we are wondering, “Who will ‘align’ with people with disabilities and their families?” 

Over the past six years, we’ve shown the way for hundreds of citizens to build caring, mutual relationships with people with developmental disabilities. These are the people who will celebrate birthdays together, check in on each other when they are sick, and keep each other safe over a lifetime together. These are the people who will open the doors to employment or the chance to gain skills needed to take the next step. These are the people who will make the biggest difference in the lives of people with developmental disabilities, but only if Starfire works to help them know each other in the first place.

We know how important this work is. That’s why Starfire will continue to align with people with developmental disabilities, rather than shifting our work to align with United Way’s Bold Goals. We cannot get distracted by dollars or outcomes that don’t contribute to a future that is worth working for. We believe that our work is the only way out of a culture that continues to perpetuate loneliness and isolation. We have our sights set on the bigger dreams for full lives that people with disabilities and their new allies are creating together.

Our work, then, is to redefine the way people with disabilities are seen in our communities, and to help heal the wounds of separation they are experiencing through loving and respectful relationships. It is through this work that meaningful and lasting contributions can be made, and a good life for all of us can be reached.

Starfire is poised to serve 100 people with developmental disabilities in a completely personalized and respectful way by 2018, with the enthusiastic support of many funders, families, and private donors like yourself. They are excited about our outcomes and innovation. Now more than ever, we are asking you to align with us, and here’s how you can do it:

– Fundraise with us. Share this post with your friends and family and ask for their support!
– Donate. Help us reach our Annual Giving fundraising goal of $200,000 by December 31st to support our good work in 2016. http://starfirecouncil.org/make_a_contribution
– Get connected to someone’s story. Comment here and ask to learn more about how you can join the many in this city building life-changing bonds with people with developmental disabilities.
– Buy Art. On November 27th head to Pendleton Art Studios to find the perfect gift. Proceeds will go to benefit Starfire!

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The Great Flood

Genesis 7:17-20 “For forty days the flood kept coming on the earth, and as the waters increased they lifted the ark high above the earth. 18 The waters rose and increased greatly on the earth, and the ark floated on the surface of the water.19 They rose greatly on the earth, and all the high mountains under the entire heavens were covered. 20 The waters rose and covered the mountains…”

“How long does a building stand before it falls?
How long does a contract last?
How long will brothers share the inheritance before they quarrel?
How long does hatred, for that matter, last?
Time after time the river has risen and flooded.
The insect leaves the cocoon to live but a minute.
How long is the eye able to look at the sun?
From the very beginning nothing at all has lasted.”
Epic of Gilgamesh

DP130155, 2/7/06, 11:18 AM, 16C, 6856x8852 (180+693), 100%, Rona Copywork,  1/30 s, R93.8, G57.6, B56.4  Working Title/Artist: The Great Wave at Kanagawa (from a Series of Thirty-Six Views of Mount Fuji)Department: Asian ArtCulture/Period/Location: HB/TOA Date Code: 10Working Date: 1831-33 photography by mma, Digital File DP130155.tif retouched by film and media (jnc) 8_17_11

Hokusai / The Great Wave at Kanagawa  


Nearly every culture has a flood story.  A great tide takes over what civilization has built, a deluge pours on Earth, a rising of water takes out what has been created leaving behind only a few to start again.

The Hebrews had Noah, a story most are well familiar with.  The Babylonianss had the story of Gilgamesh.  Greek, Indian, Australian, Native American, and African cultures all have flood stories as well.  They are omnipresence, everywhere in human cultural memory.

All cultures with flood stories share a similar theme.  It’s a tale with various characters encountering an onslaught of water, a great flooding that destroys what’s already been created, often in punishment for wrongdoing, wickedness, or sin, and the destruction is in preparation for a new, hopeful start.

Among these great cultural floods is Starfire’s.  Noah had a timeline when the waters would recede and life could begin again.  He was given 40 days and 40 nights before the waters would recede (depending on which translation you read this timeline of course varies.) Starfire was not so lucky, with various timelines given depending on which contractor is estimating, which piece of the building is repair next.  The after effects of our great flood continue to be felt.  Biblically, as 2 Peter 2:5 states, the flood “did not spare [our] ancient world.”

Perhaps not divinely influenced or mythologically inspired, a flood nonetheless wiped out years of creation, work, artifacts of decades of outings, and programming.  The building itself has been closed since August 2nd.  Historical relics of our past work: pictures dating back to the early 90s, newspaper articles, the archived documents of bygone fundraisers, previous grants received, notebooks, readings, artwork, past collaboration projects’ accessories like signage and props, and assorted desk trinkets all destroyed in a sudden rising tide.


Flood damage


the tides of destruction

Part of the heritage of Starfire will be the story of when the great flood happened, and the covenant we made with families to continue the work of community building one person at a time.  There is also the story of what happened after the waters receded and how we built again, more thoughtfully, more intentionally.  Part of our cultural story will be the questions of purpose, philosophy, and praxis.  There’s a cultural wisdom in flood stories that is universal, regardless of which culture’s story you read.  And that is, that with a great water, a flood, a modern day water main break, there’s an opportunity to correct the course of action.  At it’s heart, flood stories are creation stories more so than they are about destruction and wiping out of past mistakes (those pieces are important, but the after is the moral of the story, not the waters of obliteration themselves).

Creation stories are stories of hope, not of despair and ending, but new beginnings.  They teach us to have care for that which we’ve created, and that which we are charged to care for, and about.  Flood stories are eye towards the care of our creation so that destruction through water main breaks or Olmstead or the rising tides of what is right, need not be so utterly messy.

November 3rd, 2015

November 3rd, 2015

Genesis 8:11 “the dove returned to him in the evening with a fresh olive leaf in its beak. Then Noah knew that the floodwaters were almost gone.”

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From the Archives: A Good Staff

cincibility archive
Originally published October 9th, 2013
. . . . . . . . . . .
He arrived with greasy hair, an otherwise nice looking man usually in clean clothes now showing up in dirty t-shirts, falling asleep in his chair, nodding off.  Apologetic, he’d right himself quickly, mumble an “I’m sorry,” and then drift back asleep, again, slouched.

We asked what was up, what was going on, talked about needing to go to bed at an earlier hour, offered suggestions for ways to get a good night’s sleep.

We called home and asked if anything had changed.  Mom, Dad, had no suggestions.  “Maybe he’s still adjusting to living on his own?” they wondered aloud.

Weeks later, he said what it was: “Gary.”  His staff watched TV all night in a small group home apartment where the bed faced the TV with only a thin wall to block out noise.  But the thin wall didn’t block out noise.  The TV was loud, always on, and he couldn’t fall asleep with Gary on the couch, the flickering glow of late night shows, the constant noise.

And because Gary was busy watching TV late into the night, Gary sometimes didn’t help him in the shower.  Without Gary’s help, a shower couldn’t be had.

But why didn’t you say anything? we asked.  Why didn’t you tell us what was happening?  Why didn’t you tell Gary to turn off the TV and to do what he was there to help you with?

“Because he was a good staff” he replied.  Continue reading here

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I’m three months into my new job at Starfire. The lessons and experiences are piling up every single day; so when I can, I try to reflect on the ones that really stick out. So let me set the scene: Jerry and I are walking through MicroCenter Mall. We are surrounded by glowing rectangles, each boasting faster and bigger and more.  I might be the only woman in the store. We meander through aisles, eventually reaching a cove of laptops and tablets—this is Jerry’s domain. He eagerly swipes through the tablets on the table, showing me shortcuts he’s learned. His hands aren’t very nimble but he loves technology and I’m impressed with his dexterity with these shortcuts.

We are just there to browse. MicroCenter is a new place for both of us and hell, I can get geeky if I need to. I assume that this place will be like used car lot though, with salesman ready to tell me how much I need this new processor-thing and oh, by the way, I love that jacket. I mentally prepare myself on I-275 for our response, “we’re just here to browse.”

At first I’m pleasantly surprised that no one approaches us in the laptop cove. Without interruption from commission-hungry employees, we’re free to surf the net. Jerry and I casually research some upcoming events at the Cincinnati Observatory. He shows me some projects he’s worked on, the telescopes he and his dad have built together, and of course, the latest pictures of Pluto. We sit there intently using this brand new laptop for 15 minutes or so. A couple of times I see an employee approach and I hold my breath—only to see his pass us by to ask someone else if they needed help.


We’re done with the laptops and back in the flotsam of cords and wires and user manuals. I should mention here that Jerry uses a walker to get around. When I’m walking with Jerry, I’m always aware of it. Is it going to scratch that person’s car? It shifts in the back of my car and now keeps bumping against the back of our seats. Sorry, Jerry. I’ll move it again when we stop. He’s pretty hard on his walker, crunching it over crumbling sidewalks, tugging it sharply around corners, pushing it through unmown grass. Oh God, don’t break this damn thing, Jerry. The walker makes noise. It squeaks and clangs as we traipse around MicroCenter. Sorry, fellow shoppers, I think to myself but then, I don’t have to apologize. Deal with it, fellow shoppers.

The store is full of dudes. There’s one in every aisle and I’m starting to notice a pattern. As we go down each aisle, it’s like we’re invisible. The dudes don’t look away from whatever microchip they’re hunting down but just…move out of our way. It’s effortless. We’re just a presence that they unconsciously move away from. I notice this because it’s literally happening in every aisle. I start to make a mental game of it…is this guy gonna move—whoops, there he goes! Invisibility!

People ask, “Which superpower would you rather have, flying or invisibility?” Everyone always says flying. Why? Invisibility could be cool. You could spy on the President or freak out your enemies. But I’ve never ever heard anyone choose invisibility. I think we all quietly recognize that invisibility isn’t really a superpower. Flying is transcendent, awesome, and divine. Invisibility means no one knows you’re there. If you’re not there…who the hell cares?

I’m sad as Jerry and I leave MicroCenter. I’m realizing that Jerry, who has ingeniously figured out a way to manage complicated machines with a few buttons on the keyboard, who forces his walker over rugged terrain, who builds and dreams, who wants a bagel , who loves random acts of kindness, who worries when the food pantry’s shelves get a little bare when he shows up for his volunteer gig, who sings to me in the car sometimes…Jerry doesn’t really exist for some people.

But that’s the work of Starfire, right? To make the invisible visible.


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If you’re a person with developmental disabilities looking for a group exercise class, you might find yourself being funneled into services for people with “needs” like you. You’ll sign up for a class through this special service, and begin attending classes that are created especially for people with developmental disabilities. Maybe the class being offered is 10 miles from your home, but it’s what you signed up for (and it’s all they offer). While you’re there, maybe there is a volunteer or staff person who doesn’t have disabilities. They’re there to join the class with you – and you love having them there but depending, it might feel odd, like chaperoning. By the end of it you’ll find that the class is sort of like you’d imagine any fitness class to be, and you like it.

But part of you knows that a “group fitness class” in any other sense of the term  does not look like a room full of people who share the same (often negatively perceived) label as you. You have a choice to attend this class, no one is forcing you to. But at the same time, the options in front of you don’t always look the same as the options laid out in front of a person without disabilities.

Choice 1: Attend a group fitness class with other people with disabilities

Choice 2: Attend a group fitness class in the community

Choice 3: Stay home

What choice would you make? Probably not unless you are living with a developmental disability or you are a parent of someone with disabilities do you truly know how weighty Choice 2 can feel. The anxiety of trying something for the first time and meeting new people is loaded with a history of setbacks and other challenges. Especially when the majority of services for people with developmental disabilities operate under a model of providing separate activities for you, it’s difficult to travel down the road less taken. And it’s likely that without these services, however imperfect, you’d be sitting at home instead of having any kind of social life. Your experience already tells you that for various reasons, not withstanding the nature of your disability making you inherently “different” than others in the community, that trying to fit in outside of the “service world” comes with a litany of new challenges. Why make things harder, when there are good services available that will create a social life for you? Let’s not forget that with these services comes loads of comfort and reassurance for your parents and the community alike. You’re taken care of.

Still, if your simple goal is to start exercising with other people, might it be worth it to channel just part of your efforts toward tapping into what the community already has to offer? Might it be possible that there are also people in the community who are willing to chip in some support to you (not all, but whatever they can give), and not get paid?

There are dozens of Zumba classes happening around the city every month — some of these might even be close to where you live. The schedules are easily accessed on local fitness center websites. So you do your research and show up, right? You pay for the class – and voila! You belong. Easy peasey lemon squeezy?

Maybe you’ve caught on, but the story we’re trying to tell at Starfire looks different than a separate life for people with developmental disabilities, BUT (I know, there is a but) a full life for people with disabilities also doesn’t come as easy as just “showing up” in the community. Were it, I promise I would wrap up this whole blog post up right now with a nice little bow and cherry-on-top and leave you to the rest of your to-do list.

It’s just not that simple. There are too many preconceptions, too many real concerns for safety, and too many tangled support systems in a person’s life that make it difficult for them to enter a room without the others in that room, or their caregivers, or their family having a whole lot of limiting beliefs around what it will take to include them.

The important part (that took us 20 years to learn) is not putting up roadblocks that take away the possibility of an integrated, meaningful life for people. One of those roadblocks (that we’ve had to dismantle at Starfire) is operating under the sole assumption that people with disabilities can only have a full life if services recreate a community-esque social life FOR them.

A life, ordinary, purposeful, and in the community – truly in the community, for a person with developmental disabilities does take work. It requires a different way of doing things from what most people have learned, and that means hard work. Beth is in the middle of this journey. For a couple years now, she has been working with Starfire and her family to build a community of Zumba lovers around her. Week after week, we encouraged Beth to show up at her local rec center to take ordinary community classes. Soon, her family got on board and it became a whole team effort. There was no middle man, besides Starfire’s staff slowly helping facilitate relationships with the other women in the class. She started slow and learned her way into it. She grew more familiar with the steps and the songs a little more each class. Friendships started to emerge with certain instructors whose children’s names she learned and birthdays she remembered. If she doesn’t go one week, she’s missed. If the instructor needs an extra hand, she’s asked to help. Once this network got established in her life, Starfire then helped Beth and the other women deepen their connection by brainstorming around a project idea that they could work on together. Beth became the catalyst for a Zumba fundraiser for Children’s Hospital that she and her group of Zumba-goers organize. Next year will mark the 3rd annual Cha-cha for the Children (see video).

Yes, there are pro’s and there are con’s to recreating a special class for Beth to attend where she is showing up to exercise with other people who have Down Syndrome – like her. But when it comes to the pro’s and con’s of her joining a community fitness class in her neighborhood – with Starfire’s facilitation and support – the benefits far outweigh any con’s. Maybe the second option requires a little more courage at the onset, and a lot more time in the long run, but it is the way to deeper, more sustained relationships in Beth’s life and a richer, more inclusive community for us all. Who wouldn’t want to at least try?

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