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.”

 Adequate

  Inadequate

Messy, 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.

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.

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 )

…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!

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

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

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.”

A guest post by Patti Schaefer.  Read Part 1 here

After we bestowed quite a bit of love on our 74 year old/new house in the way of updates and improvements we all decided that this will be a home that will shelter us and we will care for.  We very much love our new home in Blue Ash!

But this is a house that we will not be staying home nearly as much as we did in our former house. We’ve committed ourselves to be much more involved.

Since the original presentation (given at Good Life Networks in 2013) we continue to ride our bikes…we’ll be riding in our first bike-a-thon fundraiser at the end of this month…. There’s a 7mile and a 30mile ride offered…..we will definitely be doing the 7mile and enjoying the party afterwards.

Chris on a recent bike ride with Allison (taking the picture) & Candice

Chris now has two unpaid connectors in our community. One, a family named the Connor’s, Allison, Dan and their three children Dylan, Mari & Hank. (and Hurley the dog). They have become an extension of our own family. They also have brought many other people into Chris’s life, who are also beginning to spend time with Chris and include him in functions.

Chris’s other connector is a young man named Shaun Smith, who has shared his time and personal friends with Chris. I overheard him say to a friend on the telephone, “I’m over at my friend Chris’s house. We’re going to go to the Rec Center to work out. Why don’t you meet us there too?”

My friend Chris.

Chris and his dad, Ron joined a group called MOBO. This is a bicycle club in Northside where you can bring your own bikes to repair or adopt one of theirs, repair it and donate it. They also have the tools that you can borrow and experienced people who can teach you how to make the repairs. They have an inventory of most needed spare parts that you can purchase for a nominal cost.

So far, Chris and Ron have repaired our daughter Katie’s and my bike. They also have purchased two older bikes online. They rebuilt one of them for our son-in-law Scott. And are currently working on the other one for Allison who wants to participate in a marathon. Who knows….If Chris continues there, maybe he will help out as one of the instructors at Mobo!

We’ve been adopted by another of Chris’s friends and her boyfriend, Emma & Jason. We meet them periodically for dinner and during football season go to their house every Monday night for a group potluck dinner and football or crafting for those of us that aren’t fans. We have met people of all ages through them and the food is always great.

invite from the meet & greet

Chris is now working on his Senior Capstone project with Starfire. He’s decided that his passion is people. He wants to connect other people in Blue Ash just like he’s being connected. His first event was a Meet & Greet Open house held at his home on September 6th with the help of Candice, from Starfire.

There were approximately 30 people in attendance. To our amazement everyone stayed the entire time.

Afterwards Chris, Ron & I discussed all the different connections that took place.

1) Emma and Jason found out that they live on the same street as Shaun’s coworker Tammy who was there. She and her family are now invited to the football potlucks.

2) One of the Connor’s friends Patrick mentioned he liked to work-out and he, Dan and Chris went to the Blue Ash Rec Center last Tuesday night.

3) One of the UC student’s, Nathan, that had visited Starfire, came to the three day event there. Chris invited him to his Meet & Greet. Nathan came and Chris took him out for Pizza last Saturday night. We also are all going on a bike ride on the Loveland Trails this Sunday.

4) Our friend, Roger came to the Meet & Greet and brought a brochure for a fundraiser being held at a golf course in Kentucky for his friend who has been battling cancer. Several people are going to play golf, Chris his cousins and I are playing putt-putt and my sister-in-law was able to hook Roger up with an organization to help with the silent auction.

I’d say the first event to connect people was a great success! Not only did Chris connect others, he met new people who are now a part of his life!

On the whole, we feel our move has been a very happy and healthy one, especially now that we are on the other side of most of the work that was involved….but, we whole heartedly agree that it was all worth it. We have high hopes that the efforts we are all making will continue to prove fruitful.

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.

Weird.

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.

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?

Feeling a bit nostalgic these days, after nearly an entire month of being out of our building. Did you hear? We had a water main break — the pipe had been leaking below us for weeks (unbeknownst), and eventually that pool of collecting water came up through the floors, drowning the building.

I found some old photos I had taken of the things hanging on the walls throughout Starfire. Some goofy, some inspiring — each little glimpses into our culture and values as a non-profit.

Do I “miss” the building? I’m not sure it’s that. What I miss is the feeling of being there. Running into other people who share the same values, passing by a picture of Zak Morris or a poster of The Five Valued Experiences – and knowing what creative, important things are happening because of Starfire.

It’s not that I can’t get that feeling anywhere else. I’m learning that actually I might be better off not relying on one building, offset from the road, not entirely open to the public for all of my warm-fuzzy social interactions. While Starfire provides a clear, sure-fire spot for me to go and commune with “my people,” this flood and building close is literally forcing me out — into the neighborhood where I live. My work entails a good amount of time spent writing and staring at a screen, so I learned quickly not to spend all that time at home – instead my laptop comes with me and I go where I’ll run into people. I’m learning the names of the baristas at the coffee place down the street from me. Instead of taking a break at the water cooler, it’s a chat over the fence with a neighbor. I’m starting to see where I’m needed most and the people who matter to me most are not in one building, but all over my community in places and on sidewalks near my home and my family. This is where the long term relationships that will sustain me live. This is where I belong.

The building renovations will be getting underway soon and not too far down the road we will return. Tim has been working non-stop to ensure that Starfire has a rebirth that will do justice to the people with disabilities we are serving and to the mission we are driving toward. Knowing that this flood has been the most difficult for Starfire members who rely on the building as more than just an office space, this time for me has been a process of letting go and moving forward in a more mission-driven direction. My work no longer has walls. Instead it has community written all over it, and that is where Starfire belongs.

Weeds are such personal plants.
They seem like intruders,
Breaking into our beds
And stealing the sun and soil,
Strangling and starving their more noble neighbors.
So we pluck them when we can.

We weep as we watch them pile up,
A day by day decay
Of fetid filth,
Filling up the secret corners of our lives.

And yet, over years,
They start to fall apart,
Turning over gently
In the heat of our hearts.

Then, slowly,
A soft sweet loam
Forms the fertile folds
That feed the seeds
Of fruits and flowers.
These weeds of ours.

Robert & Mike at Corner Bloc Coffee catching up

It’s a cool March morning while Robert and I wait for an old friend of his to arrive.  We’ve set up a coffee date to try to finally get the two of them together.  Mike walks in, wearing a sweater and flip-flops, the typical Cincinnati uniform when the weather starts to turn a bit warmer.  He immediately hugs Robert, and plops down on the couch at Corner Bloc Coffee.  “I met Robert when he was working at Moeller High School over a decade ago.  We became fast friends.”  Mike says.  This coffee date was planned to have a conversation about how to prioritize their friendship in each others’ lives.  Out of the discussion, the idea of the “Breakfast Club” was born.  From the outside looking in, you would not know that Mike and Robert haven’t seen each other in a few months, a busy work schedule and a lack of reliable transportation always getting in the way, respectively.

The Breakfast Club (which launched in April) is an every-other-month speaker series where Cincinnatians are invited to share personal stories about whatever they are passionate about.  Citizens are invited to attend, ask question, talk candidly and start their Monday morning off without agendas or emails.  The idea is that people can be casual, grab a coffee and breakfast, and listen to someone talk about what’s important to them.

Mike explains why he was on board to start the Breakfast Club with Robert: “I feel as if Breakfast Club is an amazing way for Robert to connect with his community – but also an amazing way for everyone who attends to connect with one another. Robert is a catalyst for relationship-building. Always has been, always will be.”

Vice Mayor David Mann & Robert at the first Breakfast Club

In April, Mike and Robert hosted the first gathering and the first guest was Cincinnati Vice Mayor David Mann.  A crowd of about 12 or so people arrived, coffee and muffin in hand.  The Vice Mayor talked about his fifty years of marriage with his wife, his children and “God tapping him on the shoulder” when it came to same-sex couples’ rights, and why he’s stayed in public service for so long. “Politics is the art of what’s possible” he says, smiling.

“I like hanging out with Mike because he makes me proud to have a friend like him” Robert says after the first breakfast club has ended and the date has been set for June’s gathering.

Friendship, we know, is also the art of what’s possible.
Join the next Breakfast Club on Monday, June 29th.  Free tickets available here.

The Breakfast Club

By the time I leave work on a Thursday I can expect a few missed calls, usually accompanied by voicemails left by my friend Ashley.  She disguises her voice and does funny accents, always with the same message, “This is your cat lady, Ashley, just wanna see if you’re coming tonight, soooo…give me a ring back!” Over the last two years, with these weekly calls, Ashley has been one of the most reliable people in my life.

Ashley and I met through Starfire.  I was still new to this world of community and inclusion, and Ashley was embarking on planning her collaboration project, a party to benefit local cat rescue groups.  As someone who liked cats, I joined her committee, and quickly went from being someone who liked both cats and Ashley to someone who loved both cats and Ashley.  During the planning process, we toured a local cat shelter and even though it was just a couple hours out of weeks of work, we both remembered it all year.  When the project drew to a close, Ashley asked if I remembered that shelter and if we could go back again, and thanks to her suggestion, two weeks later we were attending our volunteer orientation and picking out a weekly shift.

I have to admit, it wasn’t without some trepidation that I started volunteering with Ashley.  I’ve heard people use lots of words to describe Ashley: party animal, hilarious, thoughtful, sweet.  All qualities that make her an amazing friend, but not quite encompassing the same qualities you might say describe a good volunteer: hard-working, full of initiative, focused.  I was nervous as we went into our first shift, and it didn’t take long to see that Ashley and I weren’t going to fit any more perfectly into the volunteer mold than I expected us to.  She didn’t want to scoop cat litter,  and she would open doors to rooms and cats would run past her and escape into the common area. While other people zipped around with food and cats and brooms, she would sit down, and talk to cats, or quietly sit in a room and look at them. I cringed at every thing I thought was a mistake, worried that we wouldn’t fit in, or look like slackers. After a few weeks of worry, though, I realized the other volunteers barely took notice of things that seemed like big red flags to me.  Instead of everyone else judging us for the things I knew we weren’t very good at, they were really just happy to have us there to help at all.

Over time Ashley and I settled into our roles.  As we became regulars and I eased up a bit, we found things we were good at doing. We made friends with other volunteers, and started to feel really connected there.  We passed our 6 month mark, our one year mark, our two year mark, and all the while, even though all signs pointed to us being included there, a nagging part of my mind still focused on the imperfections.  Ashley’s job every week has been to change out the water dishes in the rooms, and she often leaves little drips and puddles on the floor that can get pretty slippery.  Nobody’s ever complained, or really even brought up it was her spilling, but every week I would see our imperfection in those drips and think “If I can get Ashley to keep from spilling, we’ll be able to be real volunteers here.”  On the way home, I’d agonize over the balance between meaningful self-improvement and impossible standards.  I’d rationally think that everyone makes mistakes, and we’re entitled to a few here and there, and I should just focus on the fact that we’re there and we’re contributing.  The next week we’d get to our shift and my emotional thinking would take over, and a voice in my mind would tell me we were imperfect and that was a big deal, and I would look for evidence to confirm my fears and I would question if we were really good enough to be there.

After a couple years of volunteering, never once having been to the shelter without Ashley, one night I found out she would be unable to make it.  I decided to go without her, even though we had pretty much been a packaged deal up until that point.  About halfway through the shift, another volunteer walked past me and mentioned how much it helps to have Ashley do the water every week, and how much time that one extra task can take up when she’s not there to do it.  And with that one simple comment, all my fears about Ashley’s imperfections went away, and I suddenly believed everything I had known up until that point.  Ashley has a disability.  She is not perfect.  She spills water, she lets cats out of their rooms, she refuses to scoop litter boxes.  And nobody really cares, because she is present and she is contributing and we love her.

While nothing on the surface changed that night, my perception of Ashley changed, and that made a huge change in our relationship.  Instead of seeing her imperfections as flaws that made us stand out, I saw them just as imperfect parts of a whole, real person. I freed myself up from fearfully trying to predict why people might not like her, and just focused on loving her for who she is.

Back in September, Heather, a fellow volunteer on our shift, was preparing to move out of state.  We had talked for weeks about her leaving, and how much we would miss her on our shift and around the shelter.  I checked my email one day and saw a thread of emails from the other women on our shift, which started with the following message from Heather:

I got the sweetest message through Facebook from Ashley. It took me a minute to figure out who it was because it came in under a different name. I almost cried when I figured out it was her.

Here it is –

i will miss you you will be missed very much thanks for helping out this is your cat lady ashley have a great week see you thursday

The next several emails were all about Ashley, how sweet she is, how to friend her on Facebook, and how she was part of a master plan to get Heather to stay.  It was so small, and felt so significant.  For years, in my mind, I had been fighting against Ashley’s “problems” to get people to like her, and nobody knew it but me. And nobody needed it but me.

I have always been someone who has let my fears get in the way of things.  When you’re afraid someone you love will fail, or look bad in front of friends, it can be so easy to fall into the well-meaning trap of wanting to fix them. And once you start to see that as your responsibility, it can be really hard to figure out how much fixing they need before they’re done. My relationship with Ashley has made me realize how easy it can be to let your fears get in the way not just of yourself, but in the way of someone else, too. Ashley never needed me to fix her. She was fine all along. I thought I needed to fix Ashley to quiet that nagging, fearful voice we have when we love someone with a disability. The voice tells us, “Society won’t want this person until they’re done being fixed.  They won’t belong until they’re perfect.” It’s a voice that’s quiet, and pervasive, and argumentative, and convincing. And once you stop listening to it, you realize it’s really, really, really dumb.

Over the last couple years, I’ve wondered if we were capable enough, if we were dedicated enough, if we were making too many mistakes, if people really wanted us there.  We’ve made plenty of mistakes.  So has everyone else.  And nobody has been fired or asked to leave. Because we all know that nobody’s perfect.

Zak’s employment story begins with his mother. It’s the part that tries to go unseen, wants no recognition, but works day and night around the clock to build a life, against all odds and doubts, for her son.

With a national unemployment rate of 83% for people with developmental disabilities, people such as Zak have a challenge that goes beyond your basic job hunt. It requires a ton of working parts, each in symbiosis with the other. It takes big thinking, creativity, and resilience. In Zak’s case, it takes a mother.

“I knew I would have to be the one to advocate for him from the time he was born,” she said. “No one else was going to do it for me.”

For months, Zak and his mom sought out job openings, looking for the right fit. He would fill out every application as she guided him through the questions and they would make inquiries to potential employers. Then, when they found the right fit, she put the rest in order, securing the interview, contacting Starfire to put job supports in place, and setting up transportation to make sure Zak could get to and from work.

The result was Zak starting his job last August, where he works three days a week at the Dunham Recreation Center, close by where he lives. There he works in tandem with Tom, the main maintenance staff, and together they make sure the facility is in good working order.

“It’s a win-win. What we get is a good solid worker, and he fills the gaps where we need it. He takes certain things off the main maintenance guy’s plate, which takes some of the strain off,” said Jim, Zak’s employer. “Zak has jumped right in. He’s important. We feel he’s important.”

When Zak started his job, Andrew, a staff from Starfire was there to train him. He showed him how to flow through each task, encouraged him to keep working to the end of his shift, and provided a balance for the employer starting off. Gradually he eased himself out of the role, and Zak took the reigns. But one piece to this training that Starfire does uniquely is building relationships with co-workers. He helped make sure Zak invited each of them to his birthday party, and in turn his co-workers have reciprocated invitations.

Almost a year later, Zak says he loves his job. This of course is a really important piece to employment.

“They gave me my paycheck, I opened it up, and I had a grin on my face,” he said about getting his first paycheck. “It’s a neat place to work. It’s changed my life.”

Long after the brackets closed, the fans cleared, the games ended, and the bar closed down at the Final Four FlyAway, lingering in Burke Neville’s mind was Starfire’s mission. That was 16 years ago, when the FlyAway was in its first year.

“After that Starfire became a huge part of our life,” said Burke, a Terrace Park resident. He and his wife Kelli chaired the FlyAway for several years, and eventually Burke was appointed Starfire’s Board President. At that time Starfire was focused on community supports to ease people with disabilities’ access to social activities.

“The outings were great. But when you got back to Starfire you got out of the van and that was it. It ended there,” Burke explained.

Then in 2010, Starfire began to transition toward its most innovative work. “Parents were asking us, ‘What’s going to happen to my son or daughter after I’m gone?’” Burke said.

That’s when he attended his neighbor, and Starfire member, Robbie’s PATH at his house (a PATH helps set a plan for the future that is supported by friends and family). Robbie is known around his neighborhood for being a prankster who loves to make people laugh.
“If you spend a day on your bike with Robbie, he will take you around to all the scenic parts of his neighborhood,” said Evan, Starfire staff. “And without fail, everyone you pass will wave to him.”

Robbie, Lucy, Burke

His PATH meeting was one of the most well-attended in Starfire’s history. Robbie invited the mailman, the local police officer, neighborhood garage mechanic, local Boy Scout troop leader, and tons of neighbors such as Burke. Likely due to his charisma and popularity, all of them came.

“I was blown away by how involved people are in the neighborhood,” Burke said. “It became clear to me that everyone in Terrace Park knows Robbie and cares about him.”
Since then Burke and Robbie have formed a deeper friendship together.
“I like to talk to Burke,” said Robbie. “We always bike ride together on the trail and I hang out at his house.”

“Before, it was easy for volunteers to just sign up for an outing,” Burke said. “Versus now we ask people to continue to engage and build relationships. When I spend time with Robbie, the memory doesn’t die. Which is really what it’s all about.”
Sharing Starfire’s message of inclusion with their kids became vital to the Neville family. They would read the story of Waddie Welcome to help their children understand the importance of including people.

A year ago, his son Jack joined a Circle of Friends club at Mariemont school to build a network of friends around his classmate Luke. They began by having lunch together once a month.

“It’s not just our small group of friends now, a lot of people are joining and being nice around Luke,” said Jack, a 7th grader who was recently asked to lead the group.

Before Luke was getting left out of invitations to birthday parties and get togethers. Now the group makes plans outside of school to get together, and last month Luke had friends at his birthday party to celebrate it with him.

“Luke really seems to enjoy the kids in his Circle of Friends,” Melissa Gaskey, Luke’s mom said. “With the ever-widening gap between Luke’s abilities and understanding of the world and that of his peers, we’re touched and encouraged by how other kids show support and friendship.”

Certainly, Jack’s passion to lead and get involved in bridging the inclusion gap did not come without the strong example set before him.

“It has to start with one person and one neighborhood,” Burke said. “And that’s what we’re going to do.”

Note:  This story was updated 4/14 to make the correction that Jack did not start the Circle of Friends group, but joined the group and was asked to lead it this year.

There’s a certain thirst inside someone who loves basketball as much as Desiree. It’s always there, waiting to be quenched. Patiently walking the court while pushing a broom in front of her, Des volunteers at her neighborhood recreation center by tidying up the space once a week. Collecting the dust beneath her broom, she glances at the hoops occasionally. Careful about her work, it’s clear Des holds the space in high regard but she won’t be satisfied until she’s on the court, ball in hand instead of broom handle.

Des started playing basketball when she was young. It is one of the things that she feels really good at, “I love basketball. I’ve been playing for a while,” she says. “I’m actually pretty good at it. If you take a look at me, for real.”
The sound of the basketball dribbling on the court marks the end of her volunteer shift. Weaving the ball between her legs and sinking layups at a steady pace, a thundering rhythm fills the court.

“My brothers played with me when I was a kid,” she says in between baskets. “My older brother Timothy used to teach me some pointers.”
Today, Des plays alone. But in a few months, she imagines a whole court filled with other players. Des’ next plan is to start a pick-up game with other women at the rec center. She is working with Ben, a staff at Starfire, to make this a reality.

“Right now people might think of us just as the custodians helping out,” Ben said, “But hopefully once they see us out playing and they see other people playing with us, they’ll start to be interested in building a relationship with us. And with you, specifically, Des.”

We know that building a social network for Des cannot be rushed – or created. If we try, there’s a real risk that she is only known for her disability, and that others see her as someone they “volunteer” for instead of as a mutual friend. That’s why Des’ friendships must start with what is important to her, and what’s important to the people she’s connecting with. For her, that looks like many nights playing basketball with other women, getting to know each other on and off the court, growing to love each other through a mutual affinity and respect. We know that this takes time. Luckily, what Des does have is just that.

Are you interested in playing basketball with Des? Contact Ben Lehman at Ben@starfirecouncil.org to find out how you can get connected.

And if you’d like to come to the hottest March Madness event of the year, check out Starfire’s Final Four FlyAway!

On the corner of 8th and Broadway, Mike Holmes waits for the crosswalk to change to “walk.” He is taking a break from work at the downtown architecture firm GBBN to meet with a few people for lunch. Mike started working at GBBN in November 2011, when he was hired to work as an assistant office manager. There he sets up conference rooms for meetings, sorts and delivers mail, and keeps the office looking spotless among other duties.

As crosses the street and gets into the car, he is greeted by Tim Vogt, a long time friend who is working with Mike to help him make friends so that he’s better connected socially. On the way to lunch they banter back and forth about the time Tim almost got a speeding ticket on the way up to Cleveland. The conversation is familiar and easy going, a testament to their friendship.

When they arrive, Shana, Alyson, and John are waiting, all supporters of the AAU girls basketball team, “Cincy Swish,” that Mike has been assistant coach for the last 5 years. Mike also coaches at Mariemont High School, and between the two basketball teams this sport takes up much of his free time outside of work. That’s just how he prefers it.

Today, Mike and his committee are planning an awards banquet for the players. The idea will be to honor players who have impacted the community in some way, and was brought on by Mike’s desire to give back to the girls he has been coaching.

The group goes back and forth, brainstorming which venue would be the best fit, how many trophies should be bought, and all other logistics to be considered over the next few months before the event. There will be much work needed to be put in on the front end to make the night a success.

And that’s what makes this project important. Not the number of awards, the categories of winners, or the number of people who show up on the night. While all of those things are important, what matters most is the effort each person on the project planning committee are putting in to making it a success. The monthly meetings, the collaborative spirit, the feeling of shared accomplishment at the end is what brings people together. It’s what will bond Mike to a group of people on a new level, one that doesn’t bring his Down syndrome into the spotlight or make his disability the headline of the night.

For someone who is typically left out of ordinary social activities because of his disability, it’s those stronger bonds to people who share his love of basketball that make this event matter most.

So, for the next several months, Tim and Mike have months of meetings planned with other people who they hope to engage in the effort. This is partly to make sure the event is a success, and partly to widen Mike’s social circle. As they close the meeting, John asks, “How does all of this sound to you so far Mike?” “Good.” he replies with a smile, packing his briefcase on his way back to work.

Mike, John, Alyson, Shana, and Tim

To be honest, I’m balancing a 24lb child on my lap, sitting on a bar stool at my breakfast nook.  There are boxes half full and boxes completely empty strewn about my house.  We’re packing up our belongings, selling our house, and all around us is the feeling of uncertainty and chaos.  A wine glass sits empty, beckoning a refill.  I’m waiting on a pizza to be delivered at 8:30PM, though we’ve cut dining out out of our budget until we find our next home.  The dishes in the sink will sit there, at least for another day, probably more, if I am being honest.

The 24lb girl is asleep, but if I move her, she won’t be.  And so begins the balancing act.  One arm firmly pressed against the rising of breathing chest keeping her from falling, and two hands hovering over her at the keyboard, I write.

On Wednesdays, M (almost nine months) attends with me.  It’s a luxury and a difficulty wrapped into one and I thank my coworkers on behalf of working moms everywhere for their acceptance of her at “staff meetings.”  At 7:45AM we head out the door with diaper bag, purse, lunch, toys to keep her as occupied as I try to answer a few days worth of overdue emails, my planner, a laptop, and whatever else I can manage carry in my arms to make our time in the office moderately successful.

The past few Wednesday we’ve been participating in Otto Scharmer’s online course on Theory U.  Part of the course includes reminders and practice in mindfulness.

Mindfulness last year with John Orr was a practice. A practice in this-is-what-mindfulness-is-like.  Being quiet, stopping negative thoughts, centering oneself.  Last year, it was a silent building with people sitting quietly, perfectly placed in their chairs, eyes closed, feet planted on the floor.  Occasionally, someone would whisper about a ride arriving, or a meeting taking place, and they’d slip back out of the room tiptoeing.  The silence would overwhelm us, and make us sleepy after a long, hard day of talking.  It felt good last year, to sit still, to try not to doze off at 4PM, and try not to judge the thoughts in one’s head.

As we sat in the board room two Wednesdays ago M began screeching.  A babababdaada chatter of nonsense and of import demanding me to listen.  She bites my shirt, indicating her insistence on nursing.  She lunges backwards, then sits up, looks up and smiles.  In the room, twenty or so people practice mindfulness, quietly sitting with eyes closed, hands sitting on their laps, motionless.  My hands are moving all the while.  My knees bouncing, my chair rolling from one spot to the next.  I place my hand on her tiny back to keep her from moving.  She coos with the attention I’ve given her and the starts to pout “hmmm” “hmmm” the noise a prelude to actually crying.  I am running out of time, occupying her and entertaining her and know that we need to leave the silent room of mindfulness.

Mindfulness is an active awareness of what’s happening around you.  It isn’t, not actually, the sitting quietly and tuning out.  Walking out of the room, with my girl in my arms, we head to my desk.  She climbs into my lap, settles down and I type while she nods off.  In the other room twenty or so people continue to sit silently.  I continue my practice, too.  Being aware that this situation is what it is.  This is life and this is life while working with a nine month old in arm.

The past two Wednesday’s, I’ve walked back and forth from my seat to assorted spaces on the floor where she crawls, always, towards electrical cords and cups filled with hot coffee.  We’ve taken breaks at my desk and returned trying to catch up on what I’ve missed.  I listen to Otto talk about what our past selves would think, and I smile inwardly.  My past self would have thought mindfulness to be hippie shit.  The type of practice one might have done if one didn’t have something better to do.  I know now, my past self was ignorant, and that mindfulness is most needed during the times of chaos,  not in times of silence.

The moments when I most need to be mindful are not when the building is quiet and we’re all sitting still.  It is not in moment of “practice” when it is most helpful, but in moments of action.  I most need to be mindful when I am being bitten, when I am balancing a sleeping child on my lap while paying bills and answering emails and writing and drinking wine and waiting hungrily for pizza in a house filled with boxes.  I most need to be mindful when I am arguing with myself in my head, or arguing with my husband out loud.  Mindfulness is being aware of the present moment, and not judging it as awful or wonderful, and most helpfully as John told us, not believing everything you think to be true.  I need it not in moments of silence and eyes closed sitting comfortably, but in times when I am made uncomfortable, when things are loud, when the house and life is messy and when my feet are unsteady and my heart unsure, and when she-won’t-just-hold-still-for-one-second.

The snow falling outside has got me in a certain mood. It has that effect. Fluff harmlessly lines the branches of trees and accumulates on my boots as I shuffle through the day. If I choose, I feel gratitude, reminiscing about the sound of my blue plastic sled dragging behind me, held onto by a soggy white rope that turned brown with each hill I whooshed down with my four older siblings. As if to coax me into play, it offers to take the form of my imagination: a snowman with a pipe or an angel with spread wings.

Then often with a switch, awe can turn to annoyance. Hands cold and wet, lamenting the fact that I took my scraper out the week before – I use my credit card to hack away at the frost on my windshield and curse the snow. People are fickle that way. But the accumulation continues peacefully, unimpressed by my mood. Light, bright white against the concrete and telephone wires, snow presents itself in starkness against my frustration. It’s comforting that way. I am 9 again and looking out my window, listening for school closings on the news ticker with an excitement for the snow piles that the plows will form by mid-day. Those quiet mornings in Michigan were some of the best.

So I clean off my car and get inside to blast the heat, remembering how my mom held my hand once as we walked around Sharon Woods. Too old to hold hands in public I thought, but not young enough to disobey. She and I were in a state of hibernation after the divorce, hunkering in together to get through the dark days and come out stronger, more alive in our changed circumstances.

“Look at these trees, Katie,” she pointed up with her eyes, positioning her scarf a little closer up around her mouth, “Isn’t it amazing?” I tried to figure out what kind they were, my mind working quickly to decipher her wonderment. “Just imagine how hard they are working, all of them. Dead and cold on the outside, but inside, they are imagining spring.” Before that I hadn’t thought about the trees as hard workers, resilient.

Today I look outside from my desk at the snow falling, fluff lining their stick figure silhouettes, and I feel in a certain mood. Like somehow, nothing can be too difficult if through it all we imagine spring.

Chris and I recently applied for, and were accepted into People’s Liberty Residency for this upcoming February through May.  The residency looks for “master storytellers. Graphic designers, writers, bloggers, Twitter gurus, photographers, animators, videographers.”  Chris and I are teaming up to be storytellers of those doing interesting, creative, or disruptive work in Cincinnati.   While we anxiously wait for February, we’ve started interviewing people to get our feet wet, and to hopefully deepen the relationships that Chris has with those people.  To date, we’ve done four interviews.  Spanning from a coffee shop to dinner at LaRosa’s to an executive’s office we’ve found that people are willing to share their stories if asked.  Below is an excerpt from Tim Vogt that we’ll break up into a series of posts.

CHRIS SCHAEFER: Describe the path that got you to where you are now.
TIM VOGT: Hmm… Well there are two answers to this question. One could be professionally, and then there’s one that could be personally. The best way to describe those would be that they kinda have a crisscross effect of over each other and around each other. I grew up in Campbell County, which is really close to Alexandria.  It’s pretty much, pretty rural. I remember growing up, I knew where my grandparents grew up, I knew where my father grew up, my mother grew up.  I could visit those places. Where I lived, we could just go out in the woods and run around all day and go to the neighbors place and play with them. We had a lot of freedom growing up. And we also had a lot of family around us all the time.   I definitely felt at some point that I needed to break out of that story. When I went to college, I went to NKU and I was still at home. I don’t really know how but I decided that I did want to get away, and do something different. But I only wanted to do that for a summer because I had a scholarship and I didn’t want to lose that. So I went into the career guidance center and said, “what can I do for a summer?” And they said “summer camps!” and my choices were to work at a camp for rich kids in Massachusetts or a camp for people with disabilities in California. I definitely thought that California sounded a lot better than Massachusetts. I just called them and they said “yep, we’re hiring counselors, it’s only $125 a week and you’ll be working basically 24/7.” And I said okay, and they said you’ll be living there for free, and I said, okay, that’s sounds good. It ended up that three of us, some of my friends, went out there and worked there all summer. We didn’t really know what we were getting into…we had a really great time. We made sure that our cabins were a lot of fun.  We would dig up the totem pole at the entrance of camp and we spend a whole three days digging a hole in front of our cabin and we would disguise it at night. We would put cots over top of it and act as though we were just sitting there and chilling.  And then we would go up to the totem pole during the day and dig that up too.  And we would prop it up, it was a big telephone pole, like 12 feet, and we’d cover that up with rocks and stuff so no one knew we were digging that up.  One night, at midnight, we all got up the whole cabin– all twelve of us—3 counselors, nine campers and we stole the totem pole and put it out front of our cabin. The next morning when we woke up, everyone was shocked. We had pulled off the prank! … We would just do all kind of crazy things. We had such a good time, but I learn a lot too. I remember talking to a couple of guys with cerebral palsy after a couple days of working with them and they told me to slow down. I didn’t know this about myself but I was speeding them from activity to activity. They said, “listen to us!” And we spent three hours talking. And because of their cerebral palsy, because of the way they spoke, it takes a long time to speak. So I had to listen for three hours. It really taught me that listening to people, really hearing what they say is more important than getting stuff done.

I also learned, the other lesson that I really love, is that I almost got fired…Another guy who has cerebral palsy, showed up at camp with whiskey in his backpack and this guy, his name was Dominic. He didn’t speak.  He would use a letter board and spell words out. And he shows up with camouflage jacket and a hat that says “sounds like bullshit to me” and he had this big boom box with these Led Zeppelin records and I was just kinda shocked that he actually had a really adult, edgy personality. I came from some heavy metalers back in Kentucky so I knew these kind of guys. He brought a 12 pack of Coke. No one else ever brought that the whole summer. He brought cigarettes, Pall Mall filterless cigarettes and we would have to light those for him every day.  We would all like, fight, who got to light his cigarette. Because we weren’t allowed to smoke while we worked but if we worked with Dominic, we got to do that. We got to have a few puffs.  And he knew, he knew if you worked with Dominic that he was like, the guy that allowed you to smoke with him [laughs].  So he would skip swimming because he thought that was stupid. And we’d sit there and smoke cigarettes and talk.  Then one day after we were done smoking, he somehow motioned to his backpack.  He didn’t want his plain Coke, he wanted something from his back pack…. Finally I pulled out this flask and it was whiskey. And I said “Whiskey?” and he’s like “yeah” and started laughing and I said “you want a shot of this in your coke?” And he’s like “yeah.”   This guy was 27 so he’s not like underage and he’s also brought it himself.  I didn’t go out and buy it. So, I said sure, I saw this as like his vacation and so every day, I would pour him a shot of whiskey in his coke and he’d drink it and smoke his cigarette and just chill out…

Somehow, later in the week one of my co-counselors told a head counselor thinking it was funny. The head counselor reported it and I got written up.  They said you’re gonna get fired. I had to promise I would never do anything like that again. I had to sign a bunch of forms. I totally understand why it was against camp policy but I was simply being his arms.

I mean, having a shot of whiskey with your coke is a very adult thing to do. And I was shocked that I could get in trouble for that.  Now that I look back on it, I’m really proud that I got in trouble for that. It really cemented something that’s really important to me which is people deserve to live life. They deserve to live it on their own terms. It’s not like he was getting wasted. It’s not like he was 16. It’s not like I was pouring it down his throat. Nothing nefarious was happening. With goodness, anything goes, right? I was interesting in the fact that I was one of the best counselors that summer. I listened to people.  I had conversations with people with disabilities, I didn’t just put them to bed and go off with other counselors. I considered myself one of the best counselors there that summer, but I was the one about to get fired to do something that was being asked of me by someone who couldn’t use their arms. It was a human request. So I’ve just remembered now, it really cemented this thought that maybe rules aren’t legitimate, especially around people with disabilities. And so I think I’ve been doing that for a long time. Just breaking those kinds of rules. Trying to figure out how to do that more and how to just liberate people and myself from those kinds of things.

A Sunday wedding that was months away, then weeks away, then days away, is now hours away, and there is so much still to do. The bride is panicking, and the groom is trying to calm her between anxious puffs of his cigarette.

Peter and Lori are on their own.

With time running out, they visit a salon to have Lori’s reddish-brown hair coiled into ringlets. They pay $184 for a two-tier cake at Stop & Shop, where the checkout clerk in Lane 1 wishes them good luck. They buy 30 helium balloons, only to have Peter realize in the Party City parking lot that the bouncing bobble will never squeeze into his car.

Lori, who is feeling the time pressure, insists that she can hold the balloons out the passenger-side window. A doubtful Peter reluctantly gives in.

This story was posted by the New York times a little over a month ago and it begins the way many wedding stories go: the anticipation and the every-thing-has-to-be-perfect stress of the few hours before the walk down the aisle.

Lori and Peter are a couple in love navigating the world the same as most of us married folks do: balancing a marriage with jobs, obligations, yet there in the midst of a .  The author tells us, Lori and Peter met and became smitten for each other while both spending their days at sheltered workshop in Rhode Island.

I don’t intend the recap the entire story, and share both because lately I’ve become enamored with reading the comment sections of journalism, more than the written piece itself.  It seems like no matter how benign the article is, or how heavily debated the topic might be, comment sections seems to be abuzz with advice, mandates, oughts and shoulds, and general nastiness, or ignorance about a topic in general.

Lori and Peter’s story was no different.

This is a cross section of opinions in the comment section.  I get disheartened with the uphill battle of our work when I read an article that mentions disability.  I know if I look, I’ll find what I suspect is there.  Comments like S.L. from Briarcliff Manor, NY:

S.L.Briarcliff Manor, NY

It might seem like a good idea to get the intellectually disadvantaged individuals out of the sheltered workshop but it is not the job of the supervisor of the new job to have to train and “babysit” the person while he is doing his job. That takes specialized training and time which ordinary supervisors don’t have. They are not trained to handle the tantrums and misunderstandings of the former clients of sheltered workshops. They should not be forced to have to deal with these extra problems just because some judge, far removed from the problem, thinks he has all the answers. It is not fair to the other workers to have to deal with these people on a day to day basis. It might be good for the disabled, but is it not good for the other workers who are just trying to get their work done. It is not fair to the people who are trying to make a living, which the disabled never will, no matter what a judge says.

Down the rabbit hole the comments often go, like S.L. claiming that it’s not a community’s job to “babysit” “clients” who have “tantrums” and how “unfair” it is to nondisabled people to have to work alongside “them.”

While I know in clicking comments, I’ll find what I was looking for, comments like S.L. are always disheartening.  Especially when even “well-meaning” comments respond as such:

SCA NH

I never stop being surprised at how the smartest people in our society fail to see the easiest, most cost-effective yet dignity-preserving solutions to problems like these. Think attractive retirement community of garden-style clustered residences–with a central business hub where necessary but repetitive and largely-non-challenging jobs like doing the final packaging of orders, or any kind of packaging, can be done on contract for major companies; and where social services are on-site, as well as a community center, a credit union with assistance for banking, etc.

Then more couples like these could live safely, in attractive surroundings; without the need for cars (because weekly supermarket runs could be provided by facility transport, and convenience-store needs could be provided by an onsite franchise. Supported partly by disability benefits, and perhaps by a consortium of grantmaking partners, this would work. But–too sensible; requiring diverse partners to cooperate; too much of a nonvoting, invisible population. Perhaps parents and siblings can begin to demand this from their elected “representatives.”

“Easiest, most cost-effective” the commenter writes alongside “dignity preserving”  while describing a so-called community which by design would completely isolate someone from having to leave it.

It doesn’t take much to become angered, saddened by the comment section when you work day in day out trying to design the opposite of what the above comment describes.  It is in these times, I remember the Mr. Rogers quote: “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers.  You’ll always find people who are helping.'”

blueberryintomatosoup Houston, TX

You missed the part about Mr. Maxmean being so excited to have gotten a car, something so far out of his reality before. You also missed the part about how proud and excited the couple was at their first grocery shopping trip in the car, that they took pictures. You also missed the whole point of the changes described in this article, that of integrated the disabled into society at large. The community you describe sounds lovely, but just as segregating as the workshops.

and the simple, yet thoughtful commenters who see the story for what it is: a celebration of two people getting married.

kat Los Angeles

Touching and beautiful story. Congrats to Peter and Lori! Wish you every happiness in your marriage.

Walking to my car from his garage, he is already wearing his swim trunks, carrying his backpack on one shoulder, garage door opener in one hand and water bottle in the other.

“Hey Candice.  How’s it going?”  It is the same question he asks every Monday at 12:30PM, a predictable routine each week.  Always dressed in his swim gear waiting on the asphalt when I pull into his driveway, we’ve talked about changing at the gym many times before.  “It’s no big deal.  I’m already ready.”

He puts his belongings in the backseat of the car, climbs into the passenger seat and fastens his seat-belt.  We make the drive 1.75 miles from his house to the YMCA.  The front desk attendant scans his card and punches the guest pass for me.  We enter our separate locker rooms and meet on the other side some minutes later.

The first time we went to the pool a month or so ago, he stood over the deep end looking blankly, his towel still thrown over his shoulder.  “Do you want to still swim?” I asked, half-hopeful that his answer could be no.  “I’m just getting ready.”  On the other side of the pool a handful of children wore yellow floaties strapped on their backs and kicked wildly to a swim instructor.  A mom sat on a bench, iPhone in hand.  An older gentleman bobbed up and down the lap lane.  A lifeguard stared blankly at her feet in a chair perched above the pool.

He tossed his towel on an empty bench, leaned forward and jumped in feet first.  A wave rushed over the water and a few people looked our direction.  I followed suit and jumped in as well.

“Do you have a goal for how much you want to swim today?”  I asked, pulling wet hair out of my eyes.

He smiled shyly, shrugging his shoulders.  For a second, I worried perhaps he didn’t actually know how to swim.

“Well, do you swim a lot?  When’s the last time you’ve been swimming?” I continued.  His response skated around answering directly.  “Oh you know.  I swim.  I mean I do swim from time to time.  It hasn’t been too long.”

That day, we managed 25 laps.  Twenty five lengths of the pool.  We were tired and a bit out of breath, perhaps underestimating how much 25 lengths would take out of people who weren’t “swimmers.”  We finished off our day with a walk around a local park with his chihuahua.

The next week we swam 30 laps.  The following week, 40.  I stopped and dried off a few laps before 40.  Not being a strong swimmer myself, I have a few moments of panic every now and then that I will drown if I push myself too hard, get a cramp in the deep end and then die, unexpectedly, tragically.  (I have little confidence in the lifeguards after observing one use her cell phone to prop a door open.  A man entered through the door she had propped open with her phone and the phone came crashing down on the tile floor.  I’m not confident that person who uses a cell phone for a door prop is properly trained in lifesaving techniques but that’s another story…)

“33, 34?” he asked.  His eyes looking for permission to stay longer.  “Go for it.  I don’t have it in me.”  Up and back, 33, 34.  He paused in the shallow end, “so 35, 36?”  “35, 36.” I nodded.  Up and back, 35, 36.  Then 37, 38, and 39, 40.

At 40 he stood up at the end of the pool and looked the length of the pool for some seconds in reflection.  Turning his head towards me, he asked “40?”  I smiled, “yep!  That was 40!”

On Monday, he swam 72 lengths of the pool.  The sign on the wall said 72 lengths equaled one mile.

After the second time at the pool I started down a dark road of thinking that swimming every single Monday would, to be blunt, be incredibly wasteful of my time.  I hate swimming.  I hate swim suits.  I hate the smell of chlorine.  If given the opportunity, I would swim the entire time without getting my nose wet.  I have a distaste for the way pool water burns the eyes.  I hate the way skin smells after being in a pool.  I do not enjoy the monotony of up and back, up and back.  And swimming, certainly wasn’t fully using my intellect, my gifts, what I was good at.

It wasn’t until the day he swam 40, that I noticed I was missing the point.  Monday afternoons weren’t about me.  I could either continue every Monday loathing how my timewas being spent, or I could realize that Monday’s weren’t about my time, but his time.  I could either sink, hating each Monday afternoon, or swim, and be respectful of how he would like his time to be spent.

As a staff member, it’s hard to separate the feeling of not being interested or not liking something, and the role that we play in supporting people in doing things that person enjoys, things they are good at or interested in.  It’s tough sometimes to play a role and being curious about something you could care less about.  (Art, historical reenactments, sports, religion….These have all been things staff here didn’t personally “care about” but still helped the person explore and deepen their role in it.  Because the “caring about” doesn’t have to be about the topic, just the person you’re working with.  There’s a marked difference between the two.  There is a particular sweet spot of caring about the topic and the person and we’re learning our way into that design, too.)

It would be easy to sit on the bench next to the pool and just watch or play on my phone, as many other “providers” have done for people with disabilities (or wait in cars, or sit outside, or do anything else but participate with).

There is something important to being along for the ride as you watch someone discover something new about themselves, meet someone new, come up with an interesting project idea.  And while I never liked beer and can’t stand the taste of it, if I refused based on my own preferences, where would Michael be?

I have no intention of just swimming every single Monday, swimming behind him in the lap lane.  But, we have started to notice “regulars” and are hoping to create a meet up of people who work out at similar times at the YMCA.  While building his confidence through swimming, he’s understanding that he can push himself a little harder physically, can accomplish small goals and we’ve already discussed the idea of building a team of friends and neighbors to walk a 5k together in the Spring of 2015.

Next Monday we’re going to hit the weight room first, after observing a few guys our age working out, and then swim.  I’ll jump in the pool, too, feet first, not because I care about swimming, but because I care about him.