On our first day together, Andrea and I made a list of things she was interested in.  I knew a lot of these things about her having drawn for her PATH a few years back: fashion, kids, shopping, doing her nails, her family, her friends, music…Usher specifically.

The list continued and I thought out loud how we might be able to spend 3 hours a week together, meaningfully.  What projects might be interesting to think up together?  What could we explore?  Would she be interested in taking pictures of people in her neighborhood and maybe displaying them at the Kennedy Heights Arts Center?  Would she want to plan a kid’s fun day for the local Montessori center in the green-space by her house?  Did she want to volunteer somewhere every week?

What might we be able to do together that would add value to Andrea's life with the few hours a week that we had?

Andrea mentioned that she liked the sewing class she had taken with a group at Starfire at SilkRoad Textiles, a local fabric and sewing shop. She had sewn a bag and a pillowcase with three other members and Bridget before the Flood as part of the day program.

With the mention of sewing, we shifted gears and talked about different types of sewing projects.  We Googled a few images of handmade purses similar to the bag she made, patterns for clothing items, embroidery and needlework, and then stumbled upon quilts.  Andrea’s smile spread across her face quickly.  I raised my eyebrow towards her and she nodded yes when I asked “Would you like to learn how to quilt with me?”  I told Andrea I loved the idea of sewing, but wasn't very good, but was up for the challenge if she was.

I made a quick Facebook post on my timeline, “anyone know how to quilt and willing to meet up to chat about how to get started with two newbies?” I got a couple of suggestions – talk to this person’s mom, there’s shop on Madison Road that teaches it, wish I lived closer!, I’ll ask my friend… but no concrete YESes to meet up with us and point us in the right direction.

A few weeks went by and Andrea and I continued our exploration around art, sewing, creation.  Following loose threads, we visited Tara Heilman’s studio in Sharonville, checked out an art exhibit at 21C Museum, and went to Xavier University’s art department.  But we still had not found our in for quilting.

I posted on my neighborhood NextDoor asking the same question: “Would anyone be interested in meeting up and talking about quilting with me and a friend on a Friday morning?”

I got a deluge of responses from NextDoor.  A lot of suggestions to sign up for expensive classes we couldn’t afford - a couple hundred dollars for Saturday morning sessions at one place, and a few messages from neighbors in nearby neighborhoods who were willing to chat with us but at times or days we just couldn't make.

And then, there was a response was from Mary Ann.

Mary Ann immediately said yes to talking to us about quilting and said it would be much easier if we just came to her house to chat. She explained via email she had dozens of handmade quilts and meeting in a coffee shop wouldn’t make much sense since she wasn't going to lug them around.  We had to SEE what we might be getting into to really appreciate what we might be getting into.

On the following Friday morning, Andrea and I stopped by Kroger and picked up a Fall plant to bring to our host.  It was September and we arrived on her doorstep plant in hand, knocked on the door, and waiting, nervously.  Neither of us had met Mary Ann before.

She opened her door warmly and immediately invited us in to her adorable cottage-like townhouse.  After offering us coffee, water, snacks, she showed us the way to her sewing room.  Up the stairs of her home we found a small bedroom adorned in antique sewing notions, framed beach prints, and other whimsical décor hung on the walls.  A sewing machine, ironing board and a cutting table featured prominently in the tiny bedroom. Two windows overlooked her garden and the pristine streets of Mariemont below.

We talked while Mary Ann showed us pattern books, a few photos on her iPhone and quilt upon quilt of her work.  Andrea didn’t say much, often quiet among people she doesn’t know.  I asked questions for the both of us: how long did that quilt take?  Who taught you to sew?  What do you think about quilting classes to get started?  What kind of equipment might we need? What’s a good first project for two people who have a basic understanding of the sewing machine?

Ever a gracious host, Mary Ann answered our questions, told us stories about her learning to quilt by handsewing when she was a mother of two little ones.  She laughed, recalling the hours it took to piece each fabric square together during naptimes and after her kids had gone to bed.  “I use a machine now!  Hardly anyone handsews a quilt anymore.”  She told us about how she was teaching her granddaughters and read us a silly poem one wrote about wanting to be finished, finally finished!, with the quilt she was working on.

After our hour and a half together had passed, Andrea and I stood to thank Mary Ann for her time and sharing so much information with us.  Mary Ann nodded happily and stopped us.  “You know,” she said as we were about to walk downstairs towards the car, “I could teach you two how to make a quilt.  I have all the materials in these scrap baskets, we could make a scrap quilt.  If you want.”  Andrea smiled and nodded, clapping her hands together quietly and doing a little celebratory dance.

We made a plan: frequent Fridays until the quilts were complete.  For several Friday mornings we’d arrive on Mary Ann’s doorstep, climb the stairs to the sewing room, and piece together our creations with her guidance. I needed help keeping my stitches exactly even.  Andrea needed help cutting her pieces out, but over conversations with each other and the whir of the sewing machine it began to come together, the quilts, and a budding little friendship.

Andrea completed her quilt in January while I was on maternity leave with Jori’s help and the knowledge of a Mary Ann in her home, one piece at a time, one Friday at a time, one stitch and square at a time.

While we could have taken an expensive class at a chic sewing studio, we took a risk and said yes to Mary Ann’s offer.  We followed the loose threads of finding someone who might have the gift we were looking for, and who might be willing to share it with us, someone who might be willing to pick up a thread and add to our story.

Watch Andrea, Jori, and Mary Ann in our Video Blog and see the finished quilt. Her story begins at minute 1:19.

https://youtu.be/DAs1xGFBpmY

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

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

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

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

“Motherhood changes you.”

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

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

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

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

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

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

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

Letting go of guilt Feelings you'll not be enough.

Trust the time you give, however little...is a LOT.

Admit when you're

Stuck.

"A bad day together - is already better than a great day alone."

Trust in serendipity

Magic

It will come - not out of the perfect plan.

We have to look for the little steps.

There's not one idea, ever. Not one way. Don't go it alone.

"There are a lot of things that didn't work out, there are a lot of things in her life that I will never fix, or change. But if nothing else, she has people in her life - and she's happier."

There's an element of risk - inviting people - building community - can seem scary to us... we fear rejection, or messing up... but to the people  we're inviting in, a lot of times it's exciting, a new invitation.

"Vonceil's a poet. A very powerful poet. She has met people who respect her art in the poetry community - people she can run into when we're out. It's still coming full-circle for me - what I'm learning from Vonceil and what she's learning from me."

Everything we're doing is for the greater good. One day.... it just makes sense. You just never know how this thing that you're doing will have a reason.

You can't plan it any better.

It's a journey. Trust the process.

"This job has led me to places I never thought I'd be. I'm sure Lauren wasn't aware of how big this was going to get."

As staff - we are significant in people's lives. There are only so many people who get that call. Our work is to build authenticity. It seeps beyond the work/life boundary and becomes part of who we are. That's a privilege.

Other citizens - then - can gauge what they can mean in people with disabilities' lives.

There's power in what we do. It's important. It's worth standing up for.

The first thing Josh does when he gets the newspaper is read the sports section. He sits down, pen and pad, and lists all the dates and times of upcoming games he’d like to watch. Being such a committed sports fan, Josh wanted to find a way to not just the watch games - but to give back. He decided to start volunteering at the Xavier University Cintas Center’s concession stands in order to help raise money for a local girls basketball team.

Three years into the gig, he can lead you through the back entrance of the gargantuan sports complex with a confidence that only seasoned VIP members exude. Navigating through the back elevator and hallways that are unseen to the typical ticket goer, everyone he passes greets Josh by name.

“People like Josh really make people want to come back to the Cintas Center,” said Matt Kelley, concession manager. “He really has a huge part in this whole operation.”

Once behind the concession stand, apron tied, the other volunteers who have worked with him for years will tell you that Josh is a well-known fixture. Come game time, fans will come by looking for Josh, or wait longer in line just so they can say hello. Starfire’s role in this has been to support Josh in building ties where he can become known for his strengths and commonalities. “The biggest thing, is I’m just one relationship. I want it to be a lifetime of relationships for Josh and I to have and to share together,” Alyson Tsiominas said, Starfire staff who connected Josh to the Cintas Center role.

“In my phone, I’ve got Alyson on speed dial.” Josh said. “Building friendships is something good.”

Josh also volunteers weekly at a local food charity, attends regular yoga classes, and has held down a job at a local food chain for the past two years as a result of Starfire’s support and his family’s commitment to his personal journey.

Every year he and his family attend Starfire’s Final Four FlyAway, where Josh said it’s all of his favorite things in one night: basketball, beer, and food. We’d love it if you’d join him, and support this work to build lasting, meaningful connections into people with developmental disabilities’ lives.

Join: Buy your tickets to the Final Four FlyAway Watch: Click to view Josh’s interview with Alyson at the Cintas Center Build: Get in touch to find out how you can become part of Josh’s story

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.

Check out Part 1 here and then come back to continue hearing Tim’s story.

TIM VOGT: 
I started working with Cincinnati Recreation Commission in their therapeutic rec division with Bridget, my wife now.  I didn’t know it at the time, we were just coaching basketball together and we just had a good time. I started liking this girl and she liked me..and I could just tell. We just started talking, and then dating and then we realized our lives were becoming intertwined. And our futures were becoming intertwined and we had a lot of conversations. I remember her giving me a book or telling me about a book called Lamb’s Farm, which was a farm for people with disabilities up in Chicago. And we thought that was so cool. Looking back on it now, that would never happen. We actually think that that is the worst thing for people with disabilities to be shoved away by themselves on a farm, by themselves. We visited Lamb’s Farm just to see what it was like… It’s a farm with an ice-cream shop and a pet store and people live there, but it’s separate. It’s very separate. I actually visited and realized “thank god we didn’t follow that model.”

This idea that even our dream of what we thought we wanted to do ended up becoming true in a way: what we wanted was just a place where people could become themselves and step into their own story.  We just had to learn why that original vision wasn’t the best way to go about it…When I got the job at Starfire that was in 2000…at some point I volunteered to go on an outing with Starfire and we went down to the Showboat Majestic and we saw this play and myself and Maria who was a member of Starfire at the time got chosen to go on the stage and be in the play.  I was Mrs. Claus and she was Rudolph or something and it was just a good time. The next week my roommate gave me this flyer from the paper, this was when they still had ads for jobs in the paper [laughs] and it said Starfire hiring full-time activity coordinator. My roommate Kathy gave me the ad and it was like “oh wow, this is perfect timing.” I was about to graduate college, Bridget was doing a year of volunteering at the Christian Appalachian Project so she’s not going to be up here for a while, so I went for this job and I got it. I remember they said I was too enthusiastic, that was the one knock against me. I was too enthusiastic about it.

Then I got hired and my job was to lead outings, recruit members and to double the amount of outings. Within about two months they gave me the job of being volunteer coordinator as well.  I had to recruit all these volunteers, so I did all that. And my goal was to get community people.  They wanted me to get parents and families, and I got citizens, like college students and community members, and then we grew those outings to like 100 a month. When I came there were about 40, and then were 100.  Lynn, the executive director then, she was a really good executive director.  She did the right thing all the time. She always tried to say, is this honest? is this right?  That was really helpful to learn that lesson very young- what’s the right thing to do? And then eventually…she asked if I wanted to be the executive director.  I said sure.  She and the board spent 6 months teaching me how to do all these things, and then she went on maternity leave, and then it was mine from there. That was 2006. September of 2006.  So it’s now been 8 years and along the way, Bridget and I moved to Bellevue in 2002. We bought a house and we got married. We had two children there. Around 2007 or 2008 we started learning the deeper parts of this work that was by meeting Jo Krippenstapel and having coffee with her and she started giving me articles and started challenging some of my previous assumptions about the work; but also honoring the core of what we believed in.  That story about Dominic and the whiskey, those stories were honored, but the one about wanting to start a farm [laughs] was like challenged.  It was hard to have those things I thought I was right about and being told I was wrong, but then again it was helpful to have a mentor to hold my hand through that.

We had started Starfire U already which is a big giant program which got a lot of excitement around and quickly started to learn from people like you, Candice that this should be taught by citizens and not by us, and then from Jo and Bridget and Erica, figuring out PATH plans; it should be your vision Chris, instead of my vision. Ever since 2008 it’s really been about really getting deep in learning and learning what’s even better and what’s even better. Questioning ourselves and being okay with that and being okay with change and imperfection. And then, that’s coupled with the story of being in Bellevue. We realized people needed people to care about them again. We noticed that we didn’t care about our neighbors and we didn’t think our neighbors cared about us.  We started to say, what if what we had to do was figure out how to live this, while we were helping other people figure out how to live it in their neighborhoods.  That’s where it got really tangled up. And we said, let’s just live in Bellevue forever and work on this neighborhood building and relationship building stuff and we’ll hopefully learn something from that. And we’ll take that and learn something from it for disability work and inclusion. And then what we learned from inclusion and disability was listening to people and honoring people’s individuality and finding a way to make a stand against structures and rules that keep people out and then we would take what we heard there and bring it back to Bellevue. And all these things play against each other and it’s really awesome now because we get to see all the ins and out of this stuff. We see people with disabilities overall marginalized in society, but then we also see how people were just marginalized in Bellevue and they don’t have disabilities. Or we can see people marginalized in Bellevue on a real local level, not on a program level. We can see it through the eyes of a citizen.

It’s like we’ve woken up. We’ve been able to see things that are real simple to do. Like on the way up the street to school, we notice Onyx across the street who has Down Syndrome.  He’s walking by himself and he’s kinda distracted a little bit like he’s looking around, looking at us.  We’ve met him a couple of times, but we don’t know him very well.  About half way up the street we notice the crossing guard is calling to him, “c’mon Onyx, hurry up! Hurry up!” I guess she knows him pretty well and she wants him to focus and keep moving. I said to Aaron, [my son] “do you want to walk across the street and walk with Onyx?”

He’s getting to the stage where he’s noticing differences and he probably also feels that, I’m guessing here, that Onyx isn’t the cool kid.  He’ll learn this but not without me teaching him.  We walked over there and started walking with Onyx. And of course we notice, it’s slow to walk with Onyx. We might even be a couple of minutes late is in the back of my mind. And it’s probably in the back of Aaron’s mind too.  But we get there and I introduce Onyx to Bridget and we just said “have a great day!” It’s just simple moments that we’ve discovered that are really important to us.  Don’t miss a moment you have to put yourself out there…you have to wait for them. You have to cross the street and say I’ll walk with you, even if it makes me a little bit late. And it’s only for a few minutes and it doesn’t even matter in the grand scheme of things. Onyx would have gone on with his day… But something would have been lost.

We have to be awake citizens and notice the moments when we can create a small connection. And we don’t think that– I’m not foolish, I’m not Pollyanna.  I don’t think those moments make a hill of beans difference, unless they are cumulative. If we do them every single day, I think they are transformative. I think they make Onyx’s life better. I think they make our lives better. I think they make Bellevue better in a really significant way.

CS: What advice would you give to a young person starting out?
TV: That’s a good question. What I was tempted to do was to just learn it on my own. I would have loved to have had a mentor earlier but not just one but like 10 mentors. If I was a young person I would say from the age of 12 or 13, find people, your parents, your parents’ friends, someone that you look up to, and ask that question intentionally and then ask them that question over the course of a few years. Any person in their twenties should do that too. If you want to know how to have a good relationship with your spouse, you should go find some people who have a good relationship and go ask them that.   If you want to know how to be a chef, you should go find some chefs and go ask them… I believed this story that if you just worked hard enough and studied by yourself you’d become something. And what I just understand now, is that it’s the relational aspect of learning…it’s just so important and it comes with a whole network now. It comes with credibility and experience and that brings so much more. You can study anything. You learn anything. You can try to do anything. The only way to really be successful is to have all those magic ingredients experience, advice.  And I think that comes from having mentors… I don’t necessarily like the question “will you mentor me?” I like the question “can we talk about this?” Then I really love when you get in a few years of that conversation then you can look back and see that it was mentoring. There’s this pressure around mentoring that someone has to mold me and I just don’t think that should be a part of the conversation. With my most beloved mentor, Jo, I remember thinking, I never knew she was mentoring me. We were just having coffee that’s all we were doing. And then, maybe two years ago we were sitting at that table back there [at RedTree] and we were presenting an idea and somebody said, “Now Tim, how are you learning all of this stuff? Do you have a mentor?” And I was like “yeah” and I pointed to Jo. She’s my mentor. That was the first time I had already said it or knew it and we had being having coffee for four years. I want people to say I want to have conversations and I want to learn. I don’t like it to be named. Or singular either. I’ve learned it from Tom Kohler, and Candice, and Mike Holmes, and Bridget and books that I’ve read. I’ve learned a lot from a lot of people. It has to be bigger than one—mentors.

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!