It's been 7 years since Starfire set out on a plan as an organization to change the way we support people with developmental disabilities. Our goal was to build a model of support that aligned our impact with our original vision: to build richer social lives for people with developmental disabilities. How we've grown during this transition. It's enough to write a book.

Today, we've gone from a place that supported people with disabilities on outings and in day programs, in groups, mostly set apart from the richness of ordinary community life, to a culture-building movement that puts people with developmental disabilities (as individual selves) at the very center of community life.

Reading back on our Strategic Plan set all those years ago now, it's surprising to find how well each of these statements have held up over time. Not only has each line of this Plan made it through the transition out of 3 segregated programs, a massive flood to our building, and a whole lot of coffees with citizens, funders, families, and volunteers to explain the "why" of all this change, but they have truly served as the guideposts that we hoped them to be.

Here, I'd like to share those statements with you, and our progress to date on each one. You'll notice the five categories are based directly off of John and Connie Lyle O'Brien's Five Valued Experiences. Thank you, thank you, thank you for everyone who believed in us to make it this far.

*Oh... and please excuse the targety outcome jargon, one of the things we are using this document for is to share with other organizations how we made this transition. 

Sharing Places

In 2019, people with disabilities will share places in their local communities with other community citizens.

People with disabilities will be "regulars" at ordinary places, and be known by others. Sharing places will become the springboard for building relationships and making contributions.

Recommendation #1:    Decrease in the use of facility-based services

Targets:  Transition fully out of facility-based, group-centered Outing and Day Programs (Dec 2012-2016)

Action Steps:

• Decrease membership in each program gradually until closing date (Sept 2016)

Recommendation #2: Increase in integrated community-based employment and day services

Targets: Build capacity for providing 300 hours per week of integrated services by trained community connector staff (Dec 2016)

Action Steps:

• Hire staff with desired attributes to be "community connectors" (Dec 2012-present
• Increase people served to achieve 300 hours per week of integrated services (Jan 2017)

Making Choices

In 2019, Starfire members will make choices about the levels and ways they connect to Starfire and their communities.

Person‐centered tools, approaches and practices will become the standard for people with disabilities to explore options. People with disabilities will create a “safety net of people” that support and stand by each other as they make important choices.

Recommendation #1: People with disabilities served complete a person-centered visioning session in first year of membership to Starfire (Benchmark #1: PATH meeting)

Targets: 67% of people on track to do a person-centered plan to complete one

Action Steps:

• Families attend and support PATH goals
• At least 3 ordinary citizens attend and support PATH goals

Making Contributions

In 2019, people with disabilities will be known as “pillars of the community.”

People with disabilities will have many opportunities to find and explore unique ways they can make contributions to their community and other community citizens. Starfire’s success will be determined by how many members fill “valued roles” in the community.

Recommendation #1: Increased use of career discovery processes

Target: 15% of people served

Action Steps:

• Create personalized electronic profiles to share with Starfire's network
• Conduct benefits analysis with interested people served as needed
• Utilize persons served social network to explore employment opportunities

Recommendation #2: Focus on the achievement of individual integrated services for individuals with complex needs

Target: 100% of people served receive integrated services

Action Steps:

•  Each person is supported approximately 136 hours per year around their personal goals and passions

Recommendation #3: People served attaining valued social roles (paid or unpaid positions in the community) that align with their interests, geographic location, and strengths (Benchmark #2: Valued Social Role attainment)

Target: 80% of people served attain a valued social role (internship, job, volunteer position, etc)

Action Steps:

• Staff support people served in navigating and meeting with existing places and opportunities for valued roles

Growing in Relationships

In 2019, Starfire members will create relationships with other community citizens who share places, passions and interests.

Starfire members will invite people to grow friendships with each other based on mutual respect and affection. Commitment, conversation and consistency will be the foundation for building solid, supportive relationships.

Recommendation #1: People build a "network of support" that includes people who are not family, unpaid, and do not have disabilities. (Benchmark #3: Increase relationships to ordinary citizens)

Targets: 90% see an increase in their community relationships annually

80% maintain relationships over the course of 12 months

Action Steps:

• Staff support people served in meeting with new people and connections weekly

Recommendation #2: Educate and engage families on the work of building stronger social networks for their loved ones   

Target: 80% of families are reported to be actively engaged in building social networks

Action Steps:

• Partner with local family support organization, Good Life Networks to prop up families in the journey
• Meet bi-annually to discuss progress in building social connections with staff and person served

Recommendation #3: Educate and Engage Ordinary Citizens

Target: 200 citizens annually have deeper understanding around inclusion

Action Steps:

• Invite ordinary citizens to participate in community building through projects, social, or volunteer opportunities in partnership with a person with disabilities

Experiencing Respect

In 2019, membership in Starfire is a way that people demonstrate and communicate that they are committed to building a vibrant, inclusive community.

Each story written or told about (and by) Starfire reflects respect for the gifts and contributions of its members. People who join Starfire experience the respect of being valued and appreciated for their capacities and contributions to other citizens of greater Cincinnati.

Recommendation #1: Increase in staff competencies and skills related to integrated employment and community services.

Target: 100% staff trained on the core competencies of our work

Action Steps:

• Professional development trainings including: Asset Based Community Development, Trauma informed care, Five Valued Experiences
• Staff attend 3-day intensive trainings on Social Role Valorization within first year of employment
• Staff attend 2-day summary training on Social Role Valorization bi-annually

#olmsteadaction

Jobs are an important part of people's lives. Yet statistics show that only 18% of people living with the label of developmental disability are employed in the US (Or said another way, 82% of people with developmental disabilities are not in the workforce). Starfire is working to change that picture. We are doing this by building people's social connections. Landing a job often comes down to "who you know," but the average person with developmental disabilities only has a network of 2 community relationships (unpaid, non-family, people without disabilities). At Starfire, 92% of the jobs attained with our support come directly from social connections, so we know our approach is working, even though it makes us a little different. We don't invest people's time and efforts on repetitive "job training readiness" such as mock interviews, resume building, or piecemeal work. Instead, we help people be "known" for their gifts and passions, so that when they apply for a job, their proven abilities are at the forefront of employer's minds. Here are a few stories showcasing this approach.

Becky's Story - SAF Holland

"Before I was pretty much just sitting on the couch not doing much. I was just really cut off. It got a little more real like as time went on. And I was like, I want to get out there. A lot of people at Starfire helped me out with getting my job and they had a lot of confidence that I would be able to do it and they were like, 'this is you, so you need to get out there and you know, show 'em.'.. Now I got stuff to do and I'm not sitting there bored, so I'm busy and that's what I like to do."

Megan's Story - Mt. Washington Rec Center

Celebrating Megan's 2nd year of integrated employment!

Molly's Story - Neyra Industries, Inc.

"I love working with the team that I’m on. Everyone knows my name, everybody’s very friendly there."

"It has been a pleasure having Molly here. She’s always so considerate and she always remembers little tidbits about people. She’s able to help get a lot of the administrative duties out of the way. So it’s helped free up a lot of their time to make our process in finances more efficient." - Molly's supervisor

Emily's Story - Ensemble Theater

"I got the job when my friend Ben from Ensemble Theater called up Starfire and was like, 'Where’s Emily at?' He was worried about me. I’d been volunteering for 2 years hanging up posters for plays and taking tickets during the shows. But I wasn’t able to get a ride down there anymore, and my mom couldn’t drive me down there at night because she can’t see very well.

Before Ben called I was looking for a job for 2 months. I turned in a lot of applications but it’s a lot of 'college people' who are getting hired - instead of calling me back. But when Ben called he asked me if I wanted a job and said, 'yes'! I wanted that job! And he said okay. I freaked out! I was very happy.  

This is my first job. The number one thing I’m looking forward to is working, and if I make some money I’ll get a laptop since we don’t have a computer at home. And I like being at a theater. I’ve been listening to musicals since I was in high school, that’s how I got into theater in the first place.

It makes me very, very happy that I know people down there."

Mike's Story - Contemporary Cabinetry East

https://youtu.be/1_LN11ctT-g

Craig's Story - Kinetic Vision

"I was at a workshop before. It was different since it was piece meal work. We had to do different tasks each day. I felt like I had to go really fast because you only get paid by the work you complete. One time at the workshop I got yelled at for going too fast. I didn't know it, but they were low on product and they wanted to share the work around to make sure everyone got some. In my head I was just thinking, 'I want to make some good spending cash so I've got to go fast.'

I quit the workshop when I got the job at Kinetic Vision. It felt really good. I like it more here because of the culture – and I get an hourly wage. I don’t have a staff always watching over my shoulder. Everybody’s nice. The boss doesn’t sound or act like bosses typically do. Every once in a while they have food trucks come and in the summer we grill out – us employees get to enjoy that. Employees will bring their kids down and other family members down.

They listen to what I say and they like the work I do. I’ve actually been showing them stuff. I feel like I’m valued." 

Adam's Story - Everything But The House

"My last job was only temporary. I wanted to find other employment. It was just overwhelming. And I didn’t have my weekends off. Here the job level is just perfect for me. I load trucks and have them sent out. It’s different. It’s a fast paced environment which is really cool.

My boss likes having me here. He’s extremely laid back, he likes what he’s been seeing out of me. He’s just a really cool person to be with.

The best part is being able to get back in the workforce and get some money in my pocket. And I’ve been meeting a lot of new people. I hope to be there for a long time. Stick around and get to know more people and help the company grow. Help it be a well-rounded business. When I get my paycheck I’m going to probably let it sit in the bank and earn a bunch of interest."

Congratulations to Adam (pictured middle) - who recently landed a job at a place he loves that's in his neighborhood.

Follow our series on employment and learn more about our approach to getting more people with developmental disabilities into the workforce where they can contribute!!

Instagram.com/starfircincy

Facebook.com/starfirecincy 

It's not often but when we do all get together, the women in my family are a close knit crew. Ages ranging from 2 to 65, something we can all enjoy together is a trip to the nail salon once a year. The day was unfolding well beyond expected. My two-year old had fallen asleep in the car, and on the way in she miraculously stayed asleep in her stroller. All I could think was how I might actually soak my feet for more than 5 minutes before I'd need to herd her wiggly self around the various bottles of polish and women in foam slippers.

I saw her almost immediately. While 6 women in our party claimed our powered massage thrones for the next 30 minutes and dipped our feet into the bubbling LED lighted tubs, my eyes followed her. She was wearing an oversized pink t-shirt, and on it was the logo of a local day program for people with disabilities. Her hair was tousled just in the back, likely a pillow mark. A lanyard hung around her neck. This was different from my own childhood rebellion against femininity, those times I spent carefully trying to achieve what others called a "tom-boy" look. Her appearance instead seemed to be a forgotten chore, a part of her that was taken for granted. My curiosity for her piqued. I wondered what her story was. For the sake of the rest of this post, I'll call her "Ann."

My niece bounced from chair to chair as we moved on to the manicure station, the flower design now decorating her right big toe a topic of her own delight. I spotted Ann again, this time a few tables back from where I sat. Beside her,  a woman with upswept hair and neat clothes sat getting her nails done. Ann's knees were turned toward this other woman with her hands resting in her lap. Waiting.

Ah-ha, I see. The blood inside of me began to boil. I looked around at my mom and sister, wondering if they too were seeing what I was seeing. They were looking over at my little one still asleep (still - a miracle!) and chatting about where to grab lunch next.

Carefully, I pressed my palms onto the stroller and walked over with wet nail polish to the drying station. I sat across from Ann - and the woman she was with. The dryer clicked on and the fan blew cold air onto my wet, blue fingernails and toes.

Ann waited.

The woman drying her nails looked aloof. Annoyed even. She was occupied with the time, but in a different way than Ann was. It was the look of someone on the clock, waiting for their shift to be over.

"Did you get your nails done?" I broke the silence, asking Ann.

"Yesterday," she said. I looked down at her nails, their length unruly, brittle and chipped, but sure enough there was polish clumped and smeared onto them.

Ann's hand lifted from her lap and lovingly, she reached over to sweep the other woman's bangs away. The woman darted her eyes and stiffened, it was clear she wanted nothing more than to disassociate herself from this disabled woman she came with.

It was too much.

"What agency do you work for?" I asked the other woman in my kindest, most curious voice. I was nervous about tipping my hand, revealing that I knew without asking she was Ann's caregiver and that she was on the job, but she was none the wiser:

"Care Options," she said, turning to me with such polite responsiveness that I was taken aback. If she could be so kind to me, she wasn't just having a bad day.

"Oh, I used to work there," I responded calmly, though she was hitting a new a nerve. I knew that agency well and had wrestled with them many times in the past.

Engaging this woman had opened some valve and she began to talk for the first time since I had seen them. Ann put her head on the table and listened as we talked momentarily.

As they got up, I looked deeply into Ann's eyes, "Have a nice weekend," I said.

In my farewell, I hoped Ann could see I was her ally, hoped her caregiver would realize I was disgusted with the way she treated her, wishing I knew how to be less reliant on innuendos and body language and could just come out and express my thoughts directly.

I had to sit outside. I explained to my mom the scenario that had just unfolded in-parallel to our girls day out, and she looked aghast. She hadn't seen any of it. Ann's unkempt appearances as she sat idly by her caregiver who was getting primped on the job were beyond glaring to me.

But even in a salon, where self-care and women bonding are the unmistaken norm, most people didn't notice. Ann was the invisible outsider.

Why couldn't they have just gotten their nails done together? 

How could anyone feel justified getting paid to treat the person they are supposed to be working for so poorly?

My daughter woke up to the sound of my voice, louder and more clipped than usual.

I wanted to call "Care Options" and report this behavior, make a fuss. I am still friends with one of their "consumers" whom I used to be a caregiver for, and over the years she and her family have come a long way to ensure she was getting proper supports. I asked myself if it was worth it or would it be more harmful to my friend if I made a big ordeal out of it. I hadn't even gotten their names, so maybe they would write me off anyway.

Plus, I know this agency. I've had their training first-hand, I was a recipient of it once. They train staff to be documenters of behaviors and meds, to prioritize order and safety. The rest is passing time until your shift is over. People's lives become equivalent to hours on a paycheck. I saw this thought pattern more than once when I was their employee.

Was calling to complain really going to change the way they train their caregivers to think?

It's unusual for an agency to do that, to break mindsets -- the way we do at Starfire. That's one of the reasons I've poured myself into the work here for the past 5 years. Our end game is a shift in culture, we don't stop with just keeping people safe and fed. While it can mean some of that, at Starfire we know it goes way, way beyond the basics of simply keeping people breathing.

What I also don't mean is that we take on the insurmountable task of "fixing" people to be less disabled, like so many agencies try through behavior plans and "life skills" training. We know that this way of offering support people often turns into a trap, where people with disabilities are cordoned off into the same programs with only other people with disabilities into an endless cycle of isolation and repetition. There they become known for their disability, and their assets are lost.

At Starfire we aren't paid to control or manage people with disabilities. Our job is to tackle the root-cause at hand that we understand to be a widespread belief system that leaves people with disabilities out and leads to exclusionary or segregated models in our communities.

So you see, it is other's mindsets that leave people out of ordinary life, not their disability.

So we attend to image in a way that signals to others that this person, who might be seen for their disability at first, is also cared for and valued. We ask that staff and the person they support are doing things together (like getting their nails done), because it models for others what it looks like to include someone with disabilities in a relationship. We try not to be an end for the person we are working with, but rather act as a bridge to more relationships, more opportunities beyond what our paid role can do. So we discover pockets of opportunities where people can contribute in the community.

We do more than just keep people alive. We make space for them to be loved and cherished.

This is what I want every agency and paid support person to want for Ann, but we're not there yet. Still it burns inside to see it happen, and breaks my heart to tell the story when it does.

What more should I have done? What more could I have done? I'll continue to ask how I could have done more. Perhaps my bravest step is writing this blog post. Maybe you'll help by sharing it. I'd love to read your comments.

More from Cincibility: 

A Good Staff: part 1 

Manicures aren't quite so simple

The Five Valued Experiences

Case Files & Memories

Riding the White Horse

Since 1993, Starfire has been an example of inclusion in Cincinnati. Though the way in which we do our work has evolved over the past 23 years, we have remained steadfast in our passion and philosophy of our work.  That is we know that life is more interesting, more beautiful and our communities more complete when we include our friends, neighbors, and family members with disabilities.  Starfire believes that people with disabilities not only deserve a place in our communities, in our lives, and at our dinner tables, but in fact have beautiful gifts to share once invited. This has been my life’s work over the past 8 years... I have had the privilege to see and be a part of the impact of what happens when people turn off their TVs and turn to each other, when the spark of friendship is ignited through a common interest and when the seeds of love and understanding are planted as people come to belong to each other over time. Our work is in stark contrast to what we see in the world every day: violence, fear, divisive rhetoric, hatred, loneliness, and broken communities.

We are told to fear our neighbors, to be suspicious of those different than us, and to live anonymously among our own kind. Instead this event, and these stories define who we are.

Starfire, and this year of community building projects show us a different way.  A new story: That changing the world can be as simple, as radical, and as revolutionary as quilting with a neighbor like Andrea and MaryAnn, becoming a valued community member like Telly, or planning a bicycling fundraiser like Robbie and Burke.

We know that we cannot force friendship or legislate love but because sponsors and donors invest in our work, because families believe in this work, and because community members and ordinary citizens do this work with us we are changing the very world we live in.  And at it’s a core this is a pretty ordinary way to live.  But the impact on our communities, on our lives, and in the lives of people with disabilities is having an extraordinarily beautiful effect.

Through our stories we see people coming together sharing places, people growing in relationships, people making contributions and choices, and people stepping into valued roles and experiencing respect, one person at a time, one small extraordinary project at a time.

https://www.youtube.com/watch?v=ROJExyR9MzQ Molly embarks on the journey toward a full life, filled with relationships, valued roles in the community, and passion. STORY SOIREE 2016 (Starfire Story) by Katie Bachmeyer

Allie: Why is it important for you to meet new people?

Molly: Because I think it’s important to build friendship.

Katie: What were you doing before all of this? Was your life busy do you think?

Molly: My life wasn’t busy at all.

(pause)

Katie: Now it is?

Molly: Yes.

(fade out/in)

Brieanne: We’ve been together for so long I feel like we’re an old couple! Maybe we’re boring now.

Molly: (laughs) No we’re not!

Brieanne: We don’t have anything exciting to say!

Molly: My community would be totally different without meeting Brieanne and her friends I know.

Brieanne: I guess, you’ve just sort of become a part of my friend network and I... It just seems organic and natural if someone asks like, “Hey do you want to do a get together?”I think of all my friends to invite. We’re doing a barbeque, who should I invite? And I just go down my list of friends and you’re -- just on that list. With or without Starfire, I mean you’re always going to be my neighbor and my friend.

Molly: Yep

Brieanne: But we’ve had challenging parts. I mean there some parts that like, probably get on each other’s nerves.

Molly: Right

Brieanne: I’m always late for everything.

Molly: Which I understand now! I’m like uh-oh

Brieanne: And the only time I was early, you were surprised!

(fade in/out)

Molly: Starfire has helped me make friends. If I were still in the day program and I didn’t have like jobs or volunteering I would not know that many people. I’ve been on Bark for Life committee for four years. I love planning the event and meeting the other community members (American Cancer Society fundraising event). And I also volunteer in Leanne’s room in the preschool department.

Leanne: Being in a preschool classroom it’s kind of a fly by the seat of your pants environment. So it’s nice that she can kind of just jump in and help out wherever. And the kids are really receptive to her and enjoy having her around.

Molly: And I also work at Neyra. I love working with the team that I’m on. This is the office area where I put my stuff. Everyone knows my name, everybody’s very friendly there.

Lindsay: It has been a pleasure having Molly here. She’s always so considerate and she always remembers little tidbits about people. She’s able to help get a lot of the administrative duties out of the way. So it’s helped free up a lot of their time to make our process in finances more efficient.

Molly: And I volunteer at May We Help with my friend slash neighbor Terry who’s Executive Director.

Terry: Molly’s got a great personality - she’s just a joyous and passionate person and when I pull up in my driveway

Molly: I always make sure I say “hi” to you guys too.

Terry: Absolutely, that’s what I was going to say. It brings a smile to my face because I know she’s going to say “hi.” It’s just always great to have people like that in your life.

Molly: I think that Terry is one of my best friends because I can tell him stuff.

Terry: She just always brings that, you know always brings that joyous and passionate attitude with her whoever she goes, so it certainly has an impact on my life.

Molly: I don’t know who I would talk to about Pete Rose and Sparky Anderson.

Terry: Me too. I still haven’t showed you those pictures have I?

Molly: No...Hold on I might come over tonight because I’ve got more books to show you…

(fade out)

...Molly continues to build a full life - one relationship at a time.

_____

STARFIRE IS: a visionary organization working to build better lives for people in Cincinnati, Ohio. We connect people with developmental disabilities to relationships and uncovers a person's talents and passions - so they can thrive in their communities alongside their neighbors.

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5030 Oaklawn Dr. Cincinnati, OH 45227

Have you ever stopped to find out what drives the way you present yourself?Check out these pretty typical Instagram profiles to see what I’m getting at-

• @JAlanPipes “Maker of the finest luxury smoking pipes”
• @bjmacwoodwork “Father, Husband, lifelong woodworker. Sharing knowledge makes the world a better place.”
• @gushmann “Director & amp; Filmmaker”
• @andreaswiig “Professional Snowboarder. 3x X Games gold Medalist. Pow lover”
• @seelyseeclimb “Climber, Artist, Writer, Team Five Ten, Risen from the wheelchair, currently in Yosemite”
• @jacklenniedesigner “Designer, Warner Brothers, Tinker, SSCO, Edinburgh – London”
• @dchapdelaine “Minster / Adoption / Foster Care / Music / Coffee / Check out the youtube channel”

This is a pretty quick and random group of people, but see if you can pick up on the things that they all have in common?  It’s hard to pin at first because we all subconsciously do this.  Here is the thread –

To the best of our own individual ability we all "put our best foot forward" and try our hardest to display only our characteristics that are most valuable to the people we value the most.

This is pretty intuitive when you say it out loud.  The innate hunger driving this constant instinctual adjusting and tending to ourselves is from our crave for “The Good Things of Life”.  You know…Approval, Acceptance, “to be fully known and fully loved” kind of thing, and naturally everything that makes that good life possible: family, friends, attention, opportunities to grow, money of course, and on and on.

Think about how people introduce themselves- “I’ve worked there for [X] years”, “We are so proud of how our kids turned out”, “The design team I am on was just selected for the new project”, “Our neighborhood has this party every year”, “You have to hear what my sister has been up to..”.

Statements like this reveal that these people have socially valuable roles like Employee, Husband, Father, Wife, Mother, Designer, Team Member, Industry Leader, Culture Maker, and Beloved Neighbor.  The way we choose to convey who we are to others might as well read: “people look up to me”, “I am valuable and interesting”, “impressive, right?”

But what you don’t see, and what is equally true, could be something like: “I have no idea what I’m actually doing with my life 90% of the time”, “My retail-therapy habit is trying to kill me”, “The reason I am not comfortable about marriage or kids is because I can’t even begin to process what happened to me growing up”.

We all subconsciously regulate the not-so-attractive traits about ourselves that we can’t change, and simultaneously project our best.  Because in reality, every single person on earth, from the leader of a first world country to a person trapped in sex trafficking, EVERYONE, has within themselves untapped strengths and indelible weaknesses.

Now it’s easy to solely blame bad luck here about whether a person has “the good things in life” or not, but don’t be so quickly tempted to scapegoat the whole picture.

Whether a person gains or loses social value after they are born depends far more than we comprehend on what others expect of that person, and what that person expects of themselves, and on Newton's First Law...

Expectations from others and about ourselves are cyclical and self-fulfilling, whether for good or bad.  They are like Snowballs, on a Mountain, in Space (which would make them ice-balls, but stay with me).  Whatever direction it is pushed at first, uphill or downhill, is the direction it will continue and build mass in.  Unless of course, the snowball is acted upon by an outside force... Since that logic is pretty much irrefutable (thanks Newton), it would then seem really important to receive and believe valuable expectations about oneself from the get-go, over negative ones, in order live up to and retain all the countless, valuable and powerful identities we desire… “The Good Things of Life”

Here’s is an example of how negative expectations can tragically strip a person’s social value-

• Let’s say a grown woman with a fit mind and body cannot communicate in a typical way but has an interest in gardening.  She is then granted support from human services and they determine she needs so much help communicating that someone should be staffed to be with her 12 hours a day.  Her staff person, expecting that the woman would not be able to understand the nuances of gardening, decides it would be best to avoid failure by not going to the garden often and by disclaiming to the members of the garden that the woman should not be given real gardening tasks.

What would those lowered expectations do? The woman will likely be frustrated, even aggressive at this decision.  She is then assumed to be a danger to herself and now requires full time staff and is further restricted from the community.  Which in turn would not only call out more aggressive behavior in her, but she too would begin to believe that she should be restricted from the community - Fulfilling the negative expectations to everyone that she is not able to garden, should not go out often, and is indeed a danger to herself and others.

Here’s the corollary example of how positive expectations can help someone gain valued roles instead:

• Let’s say this same woman is expected to be active in the community by her staff person instead.  They explore their neighborhood and meet people at the community garden.  She develops a familiarity and competency working with the other gardeners and is expected to contribute and pull her weight because of her new found skill.

What would those raised expectations do? Now of course she is driven to live up to those expectations and by the end of the growing season she has gained the respect of the other members in her neighborhood garden and viewed as an equal there - Fulfilling the positive expectations that she is caring, competent, and needed in her neighborhood.

So what is the reason it is assumed (expected) that a person with an intellectual or physical impairment couldn’t, or even shouldn’t gain socially valued roles?  Roles like Employee, Husband, Father, Wife, Mother, Designer, Team Member, Industry Leader, Culture Maker, and Beloved Neighbor?  Let’s lean on the father of deductive reasoning (thanks Aristotle) to find out-

• IF every single person on earth has within themselves untapped strengths and indelible weaknesses…
• AND if to the best of our ability we all regulate those indelible weaknesses we can’t change, and simultaneously project our best…
• AND since whether a person gains or loses social value depends largely on what others expect of that person, and what that person expects of themselves…
• THEN the reason people who are impaired are assumed to not go anywhere, or to be in fact mere adult children, or liabilities, or just “holy innocent gifts”, or identified solely by their diagnosis, or to be distanced from "more important" people, or even to be justly euthanized…

...The reason may be that impairments can make it impossible to regulate ones not-so-attractive traits, and even impossible to project your best to others.

Is this a valid reason to expect the worst of and for someone?  Or is it actually the most important reason to expect the best of and for someone instead?

Just as humans universally unconsciously portray their best, people with impairments are universally subconsciously devalued, to the point that when a person with an impairment gains a valued role, such as a high school sports coach for example, it is considered a rare phenomenon or even a social miracle.

So what can you do to confront such a universally accepted negative expectation for people with impairments? What could the most meaningful and effective response be to this? How could you actually change someone's life knowing this?

1. Be aware of the negative expectations and ways a person is presented that are limiting their life

2. Be in a person’s life and get to know someone beyond what impairs them

3. Believe and expect in a radically new or even best self for a person and work together strategically towards that end

4. (Bonus) Be encouraged to know that the belief and support of even just one person can be enough to stem off the torrential undercurrent of lowered expectations, and certainly enough to change a person’s life.

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

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

bougan

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

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

beckyLemual

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

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

training

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

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

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

invasive

becky garden club

 This is a reflection from Katie, an intern who started a few months ago....Here are her first impressions of what it's like to walk into a Starfire circle:

“Sometimes the hardest thing and the right thing are the same.” -The Fray

Starfire is located in Madisonville in a very pleasant building.  What makes Starfire’s space pleasing to me is mainly the abundance of windows. These windows allow for plenty of natural lighting creating a bright and cheerful ambiance. There are also many rooms available for work, meetings, and activities. Beyond being aesthetically pleasing, Starfire is filled with extremely kind and friendly people, making it an overall delightful place to spend time. But what if this was where you spent the majority of your time whenever you weren’t at home? What if you passed through these bright halls and saw these same friendly faces multiple times a week for years? It wouldn’t matter how pleasant the building was or how nice the people were, there would be something that was missing.

As human beings we are social creatures that are in need of a sense of belonging, a regular chance to meet new people, and opportunities to form relationships- platonic and romantic. So as great as Starfire’s home base in Madisonville is, what would it mean for people if that was all that Starfire had to offer them. Sure, it would be safe and free of risk to gather people at the same place every day where there is a controlled environment, but where is the growth and opportunity in that? Where is the possibility for connection? This is where the fear of the unknown has to be pushed aside and the idea of shared places is put in its place.

Before I was introduced to Starfire I would not have thought twice about having people meet at Starfire every day. It sounds like a great idea to me, a pleasant space with kind people to help people with disabilities have a better life. Yet, the first thing I learned at Starfire is that a better life is not at 5030 Oaklawn Drive, Cincinnati, OH, it is anywhere but. By this I mean that there is no one place that people can be sent to have a better life, because a better life is all around us on front porches, at parks, in coffee shops, at the grocery store, in a yoga studio, in the work place, and so much more.

Every person who is a part of Starfire is a pioneer and a trailblazer who is trying to break the pattern of how people with disabilities are excluded by society. So, what is Starfire doing instead of meeting at the same place every day? They are asking themselves, “How can we take people to the community instead of just staying at Starfire?” People with and without disabilities are getting together and choosing different projects and interests to create their own shared places in the community. It is all about gathering at cafes, parks, and neighbor’s porches because these are the places that have the possibility for connection. However, connection and relationships are not just found because a person is brought to a coffee shop, there is so much more to it. It takes showing up, and not just once, but continuously, being open to meeting others, allowing for complete inclusion, and not being afraid to be hospitable and the welcomer.

As easy as it would be to create a community within the walls of Starfire on Oaklawn Drive, it would not be benefiting people who already have a hard enough time being isolated by society. “We have to find strength in the struggle,” said Tim part of Starfire’s staff. It has to be known that just because the intentions are there to do something great, it doesn’t mean it will happen easily. Shared places in the community take a lot of time and effort, but once they are created they can have a profound effect on all that are involved. I am about to experience my first Starfire shared place this evening as I attend Amanda’s “Sip N Sketch” at a coffee shop in Northside. I know that Amanda repeatedly worked long and hard on this project to create a place that involved her passion for drawing and art. Stay tuned for my next post which will be about my experience at Amanda’s “Sip N Sketch”.

Belonging to the present moment is one of the challenges of this work. Goals are important, just as learning from our past is, but it’s easy to get caught up in the past or the future and wind up getting nowhere. If we spend our time reminiscing, the pitfalls and mistakes will turn us inward. Wondering about the future worst-case scenario, and nothing we do will seem like it’s enough. That’s why our faith and our efforts are best used when they are locked into the present moment. Gradually, the coffee we had with a neighbor, the class we joined at a dance studio, the idea we presented to the art museum, one-by-one collect like tiny pixels until every moment adds up and stepping back, a beautiful story of “the good life” emerges.

Doug and Regina from the Contemporary Arts Center, taking a break from his role as a museum guide.

A Moment:

May 5, 2016 - 2:30pm Contemporary Art Center

Cincinnati, OH

On this day I find Doug by the welcome desk. With his brilliant grin and sarcastic eyes, he is making small talk with the ladies behind the desk.

“Hey! Long-time no see,” I chirp.

His wheelchair clicks into gear and I’m led through the employee elevator and hallways, into the underbelly of the CAC. Holding still among the crisp white walls and soft lights, we pass by sculptures made of string and exhibitions with culturally disruptive names like “Chasing the Whale and Other Endless Pursuits.”

Doug lives a few blocks north from here, in a nice apartment in Over-the-Rhine where up-and-coming young professionals are flocking. Up and comers like Doug. Except until this day, I have only seen Doug in a setting where his wheelchair and speech device are one among a swath of other disability-related imagery, in a day program with other people with developmental disabilities. Back then, Doug was a disabled young man going to a place that fit with his disability. But on this day, Doug is a lover of art, a man with insights and humor, and a camera operator who is giving me access to the “employee-only” corridors of the art center. Today, he is surrounded by glass-enclosed artworks and cluttered cubicles and sculptures made of string. I still see his disability, but I also see Doug.

He debriefs quickly with his supervisor about the next film that he’ll be working on, and one of his co-workers attaches a tiny GoPro camera to Doug’s wheelchair. Things are moving fast and I realize I underestimated how much work he needs to get done while I’m there, and that I might actually be in the way. Ben, his staff from Starfire, walks with him through the exhibits directing the shot, and Doug follows cue. The GoPro and wheelchair combination is a perfect set up for recording art smoothly, in a way that helps the viewer arrive at the exhibit through Doug’s point of view. His vantage point is not just different; it’s instructive and useful.

Doug’s story is a success story. Through the use of his wheelchair and a GoPro camera, he has landed a job at a local art museum and become an integral part of their marketing and communications team. His videos are played on the Contemporary Art Center's website and Vimeo, and have become an asset for the organization.

This is also a long story - of a billion steps that were taken leading up to this day, when I am standing by Doug getting swept up in his work. And that is my take away. This moment is one of many - and as each stacks on the other, they will continue to build and deepen the relationships and valuable contributions Doug is making.

As we head back toward the editing suite where Doug uploads his footage for the editor to work with, I hear the bantering back and forth of co-workers who truly love to work with one another.  Seeing this, I understand that above all else in common, greatest gift we share in all of us is love. When that gift is both accepted and reciprocated, it makes belonging to the present moment not only more manageable, but an altogether joyful thing.

To view Doug and the Contemporary Art Center's work together, check out their videos gallery tours here: https://vimeo.com/contemporaryartscenter/videos

March 31, 2016, a federal class-action lawsuit was filed by Disability Rights Ohio (DRO) advocates claiming that the state of Ohio is illegally segregating individuals with developmental disabilities. The purpose of the lawsuit is to increase choices for people with disabilities, particularly with regard to more options for people with disabilities to live, work, and socialize in the community.  You can read the full lawsuit here. This lawsuit comes at the tail end of our journey out of segregated services.

In 2010, Starfire’s transformation from segregated services to integrated supports for people with developmental disabilities began.  Six years ago we gathered families, people with disabilities, board members, staff, and volunteers to build a new Strategic Plan together with the realization that Starfire’s previous model of focusing on social entertainment and fun only produced a temporary, unsustainable impact on people with disabilities’ experience of social isolation.

Our change was intentional. We felt we had a moral obligation to shift away from segregated services and instead into focusing all of our work in supporting people with disabilities into growing in relationships with ordinary citizens, making choices, experiencing respect, making contributions, and sharing ordinary community places with other citizens.

It has been the right path for Starfire to take though it was not without difficulties.  We know that organizations, families, and people with disabilities embarking on this shift will face many of the same challenges we have overcome, and continue to wrestle with.  This journey is not without many tough conversations, difficult questions, and time.

And yet, it has led to our most worthwhile, and beautiful work to date.

We believe that the responsibility to change is not just on the service system, but also relies on caring people who are willing to build relationships with people with disabilities and families who are interested in being part of this social innovation.  Starfire believes the future of disability support belongs in the community.  We know that you cannot legislate love or force friendship.  That is why  we are devoted to supporting people with developmental disabilities in finding their place in community by working in a person-centered model, by partnering with families, ordinary people, and businesses who believe in our mission.

We are steadfast in continuing our work in light of this recent litigation and committed to including our friends, family members and neighbors with disabilities as the central focus of our work: one person at a time.

Expectations for Starfire's first year of "collaboration projects" were high, though their design was simple enough: creative ideas built on shared passion - done in the spirit of inclusion. These projects were invented for people with developmental disabilities who belonged to our post-high school day program as a sort of capstone, or final benchmark before they moved on. Inclusion being our end goal, we knew not to base these projects on shared labels, like disability - but on a more commonly perceived denominator - shared passions. So whether it was cars, fashion,  local history, or gardening.... passion and inclusion were to be at the center of these projects - not Down Syndrome or Autism or Cerebral Palsy. The goal of inclusion for these projects also meant that each was designed to cultivate a real, authentic life experience in the community. That is, people with and without disabilities meeting over common interests to collaborate. To find people willing to be part of this first year of projects, we had to put our asset-based community development training to the test. We knew from this training that our communities were not vapid, boring places to live but in fact rich, vibrant places that simply needed to be tapped for their resources.

"Every community, no matter its state, has possibility. Every community member, no matter who, has something to offer."

Sure enough... Out of the woodwork came genealogists, screenwriters, bicycle commuters, and car enthusiasts... We plotted those people willing to share their passions on a digital map of Cincinnati and started to envision the future of our work, where inclusion was built one project at a time. Even more exciting was how different the invitation to ordinary citizens sounded. It wasn't the same as asking volunteers to join congregated activities (activities involving a group of people with disabilities). There were no sign up sheets, no service hours, no coercion. The invitation felt personal, a no-brainer for most, even flattering to some. You want me to share my love of xyz??? People were gung-ho to do something productive that got them out of the house and networking with people who were like them. Not only that, but this passion-centered design of projects turned out to be a source of momentum, and people worked overtime to make their project a success. Ultimately this blood, sweat, and tears proved to be what was most beautiful about collaboration projects: the drive was relationships. And hope.

Out of this experience, the potential to form sustainable, authentic relationships grew. It was everything we hoped for, mostly, when we imagined an inclusive Cincinnati. And while we didn't quite know it then, these first projects became our prototype for how we would design our work of inclusion moving forward.

This was all going on during my first year working at Starfire, and at some point I was told to pull out a camera. Someone had to document what was happening.  My sister's mini dv camcorder in hand and a digital voice recorder for a microphone, I began to follow the story of inclusion unfolding all over the city. A stack of tapes soon filled the corner bookshelf by my desk. By the time graduation rolled around, I had enough film to create a 1-2 minute video for each project and these played the night of the ceremony. Among them was a play adaptation of a book, a written and photographed montage of stories across Cincinnati screen printed into a mural, a car show,  a musical production,  and a film festival on street cycling.  We hoped the people watching would not just clap and leave without realizing what we had over the last 6 months: that these projects somehow managed to get at the heart of what it means to truly be included. And they did so not by contriving “special” scenarios for people based on their label of disability, but by telling a bigger story than disability - a new story.

Today, my mini dv camcorder is a more impressive Canon with two lenses I'm still figuring out when to use, and a few real microphones have been added to the arsenal. "Graduation" night has morphed into one of Starfire's biggest fundraising events and an entire night of storytelling through video. I now have over 80 of these 1-2 minute videos under my belt, and equalling almost as many are the collaboration projects that have been done over the past four years. Admittedly, this pressure to create 20 more videos every year puts me in a bit of a panic in the months before June. I want badly to get the story right. My dreams fill with sequences to the footage I've collected, the narrative writes in my head over breakfast. I doubt myself before I go into an interview, and I wonder how else I could have asked the question when I am done filming it. Editing turns days into night quickly, my eyes start seeing floaters and my shoulders ache. Sometimes it feels like I'm not equipped, like I don't have the talent or the creativity or the finesse to pull it off another year. And this story is too important not to get right. Feels a lot like writers block.

Then I remember back to the first year, to a crammed room with Ronny and Jovan and Leah and Krista and Sarah and Brandon and JC and Jason and Candice all there. Projects aren't even real yet, they are still an idea at that point. I am two months into my job. People with developmental disabilities from the day program gathered with staff to take turns sharing what their project idea was:

"My project is 'Cheeseburger Coke Parties,'"

"Mine is a play adaptation of the book Waddie Welcome,"

"My project is a film festival called 'Bikes and Busses are Better than Cars'....."

Each announcement is followed by an absolute eruption of cheering. The kind of unadulterated cheering that is not for the sake of cheering itself, but is indeed the purest and only available reaction to feeling in the room. We were onto something, it was known even then. Before my own eyes, people were shedding their label of disability and owning a new story of strength and commonality through these projects. And courage poured out - right out, I tell you - of the center of people's hearts as they got up and spoke. There was hope.

I found myself sobbing in Tim's office afterward. It was the most beautiful moment I had ever been a part of, and I felt so new and unworthy and yet unquestionably welcomed and invited. That feeling - that's Starfire.

So, dear reader, if you decide to show up this June at the 20th Century Theater - you may have the chance to hear this cheering once more. It comes at the end of everyone's video. When that cheering hits you unawares (if it does the way it did me), look around at everyone who is part of this emerging story of inclusion in Cincinnati. And when you do, just know that like everyone else here this evening - you are also whole, worthy and invited. And this hope is for you, too.

See you there,

Katie

#starfirestories

Last week, at our weekly roundtable conversation about our inclusion efforts, Amanda stood up and extended an invitation.  She and Bridget had been planning a "Sip & Sketch" and she wanted to make sure everyone knew about it.  They had designed it based off of Amanda's love of art.  They wanted a regular place where anyone could show up and draw together, so they worked out a plan with a local cafe, and then began planning and inviting.

It was a beautiful moment, and the first time in the four years I've known Amanda that she stood up in front of a group to speak like this.  Bridget said they had to print up extra flyers as Amanda had handed out so many of the original batch.  This was obviously a big deal.

These projects are my favorite work at Starfire.  They help make Cincinnati more interesting, and, of course, include someone at the center who has lived most of their life on the outside.

But they always come with a great deal of risk.  Will anyone show up?  Will the people who say they care about us be there?  Will it even matter that we've spent all this time planning and inviting?

Our mentors always start meetings reminding us that "whoever shows up will be the ones who were meant to be here."  It's a nice way of hedging our bets in case no one else shows.  It's a preventative protection against the rejection we are constantly absorbing with and on behalf of each other.

The first monthly "Sip & Sketch" was planned for a Thursday in March.  Holy Thursday, ironically, when the image of people breaking bread together is top of mind and we prepare ourselves to think about hope-lost and hope-found.

It was supposed to start at 6:30.

When Bridget and I arrived at 6:15, Amanda and her mother and sister were already there with coffees in hand, huddled around a small table in front of the cafe.

We ordered our own drinks and made our way to the back of the cafe.  It was crowded, with people on their laptops, working quietly on their own .  There was an open table of four, which was perfect for these four brave women:  Amanda, Beth, Andrea and Bridget.

But what if other people showed up, as we hoped?  There were only two small tables unoccupied.  I pulled one of them over to make room for six, expecting that at least two would show up...wouldn't they?

In a moment of daring, I pulled over the second table, making room for eight.  It was a risk.  If those four extra seats remained empty, it would be another wound for Amanda and her mother and sister, who have had years of sitting, walking and being alone together.  And it would be rough on Bridget, who poured her heart into honoring Amanda's love of art, birds and eclectic conversations by connecting her with others who share the same orbit.

The clock hit 6:45.  It was pouring down rain.  We were all thinking the same thing:  Surely people are caught in traffic, or waiting for the rain to let up.  Surely it won't be just us here tonight.   Right?

I started making the excuses in my head:  rain, Easter weekend.  I began telling myself it was no big deal:  This is the first of a monthly gathering....Surely we'll end up with a few more next month and a few more the month after that?... I started doing a mental analysis of how we could get more people here next time.  I even asked Amanda if she was open to having a featured artist each time, thinking "at least that means one person would show up."  I saw a woman walk in who had a cup of coffee and looked our way with a smile.  She sat down by herself with nothing to do.  "Maybe she is looking for us," I thought.  I gathered some dishes to take up, and intentionally walked by her to make the invitation.  "No thank you," she said.  My hopes sank.

The clock hit 7:00.  Amanda began asking about people by name.

"Is Ursula coming?"

"Is Grey Coming?"

"Is Jen coming?"

Each time she asked, I winced.  I thought it might be time for me and our two sons to make our way over to their table.  At least the three of us joining them would fill up the table.  Maybe Amanda and her family and Bridget would forget that no one else had showed up if we filled the empty chairs.  And I reminded myself of those hollow words "whoever shows up will be the ones who were meant to be here."  I guess it was just Amanda and her family and Bridget and our family meant to be here tonight.  I want to believe those words so much, and I tell others that same thing so they won't feel rejected, should the worst happen.  But deep down, we know it hurts.

And we all knew the worst thing we feared about tonight was going to happen:  No one, despite our best efforts, was joining us.

And then....Jen walked down the hallway!

My heart leapt and I sighed.  Thank God for Jen!  We thought she might come.  She said she would.  And she did!

"Michaella is up front getting coffee," Jen said as she gave us all hugs and sat down next to Amanda.

Michaella was here?  Awesome.  Thank you, Michaella!  That's two!  OK, we're good.  The day was saved.

Moments later, Grey walked in, apologizing for being late, and brightening up the room with her big beautiful smile.  Grey!  You are more amazing to us right now than you could ever imagine!  She pulled out her watercolors and started catching up with Amanda and getting to know Amanda's family.

There was only one empty chair, and Grey arriving had already filled our wildest dreams for the evening.  These seven ladies all chatted and complimented each other's art.

Who could ask for anything more?

And then Ursula walked in.  She even had a copy of her comic book for Amanda!  Sweet, thoughtful, wonderful Ursula.

What a big beautiful, full table of artists.

Bridget and I left around 8:30, and exhaled.  All of our hopes and fears and worries and doubts had left us mentally and emotionally exhausted.

But it was all OK.  We held that last image of them happily chatting and working away.

And Jen even texted Bridget a short while later that a patron had come over to the table and asked to be included in the next one!

These are the moments that keep us all going.  The risk for people like Amanda and her mom is a big one:  If you put yourself out there, what happens if no one shows?  Does that mean you're "supposed to be" alone?  Do you eventually stop trying?

And if you're Bridget, it might seem tempting to avoid the potential letdown by doing something that doesn't require anyone but you and Amanda.  If the two of them go bowling or to a movie, there's no hurt if no one else shows.

Avoiding rejection is a safe place in the short term. But it's a lonely place.  I wonder if Jen and Grey and Ursula and Michaella know what it means that they showed up.  Sure, it's nice, but do they have any clue how important it was that they chose to spend an evening drawing instead of getting home early on a rainy night?  Do they have any inkling of how beautiful their choice was?

The people who were supposed to be there showed up last night, even if it wasn't on our timeline.   Holy Thursday, indeed.

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 )