It’s a question that I hear over and over, and it used to stop me in my tracks every time. I’ve heard it from people who think we’re crazy, and parents who believe that their sons and daughters are capable of anything, and from almost everyone, because it’s a questions we all grapple with: “How is any of this friendship business sustainable?”

Part of the reason this question is hard for me is because I’ve struggled with that myself.  Like lots of people in their 20s, I can track my friends electronically, and there is evidence that I have a full social life.  I have just over 600 friends on Facebook, I have just over 200 phone numbers in my phone, and yet, there have still been long swaths of time where I felt like I didn’t actually have any friends. Even though I’ve made plenty of friends in my life, they’re not all around me right now. They moved away or I moved away, some had kids, some just kind of fell off my radar. They got lost after a friends divisive break up, they got busy with school or work, or they weren’t who I thought they were, or vice versa.  We’re all familiar with what causes friends and acquaintances to become social relics of a time in our life. We all know that it hurts, or is awkward, or just kind of sucks when people who drift away from us.  But most of us are fortunate to not have to stress over how to stop our current friends from joining the ghostly crew of former friends that live in our past.

When I think about my former friends, no single loss hurt too bad.  I’ve been sad to see friends go, and I’ve struggled to rebuild my social circle from time to time, but even through my most friendless hours, I was never really alone.  There was always someone to call or talk to.  Even when I didn’t have really close friends, I had people at work I could joke with over breaks, or who would ask what I did over the weekend.  They may not have been deep, intimate, soul sustaining friendships, but they helped me feel less alone.  And lots of us can think of a time in our life when our social landscape looked like this.

One story I hear variations of from parents goes like this: “Suzanne had a few girls in high school who were really nice and would take her out to dinner sometimes, but they went to college.” Or, “Tyler knew a guy in the neighborhood he would play basketball with, but he got a job and moved to Oregon.” Or, “Natalie used to go shopping with a woman at work, but she had kids and is just so busy now.”  Most families of children with disabilities can recall a time when their son or daughter had a friend or few, but most have not experienced their children having the deep and diverse social circles many of us have.  When only one person leaves, they don’t just create a little hole for others to fill in, they tear apart the whole network. So, when I would hear these stories and parents would ask me “How is this sustainable?” I knew the real question behind it.  It was “Friends are great, but she’s made friends and they leave, so how can you promise me these people you’re bringing into our lives aren’t going to be gone in a few years like all these other people were?” And I couldn’t.  And in me, that questions became a feeling that was not great.

For a while, day after day, I’d drive home and think of the fear of people leaving, and of temporary friendships. I’d let the fear limit me and I’d try to forecast where people were in their lives. If they seemed too “in transitiony,” I had some reservations about introducing them as a possible connection for someone. I’d think of the pain of loss, how well some families knew it and how badly I wanted to protect them from ever experiencing it again. I’d reflect on my own former friends, and how much more it would hurt if each friend moving on left me alone and building a circle from the ground up.  And then I realized that was the difference. While my individual friendships weren’t extra-sustainable, the circle they made up was.  And that was the closest answer I could figure out to the fear of being the friend left behind.

None of us can make people promise they’ll always be there. That turns friendships into assignments and commitments, and that isn’t good for either person.  We can’t make people sign loyalty contracts, we can’t meet someone new and ask what their 5 year plan is, and we can’t roll our eyes when our friends tell us they’re taking a new job, or having a baby, or moving to the other side of the city.  What we can do is make sure while people are around, they’re acting as connectors, bringing more and more people into a person’s life so there are always new friends on the horizon.  That way, if and when they leave, there are a few people they’re leaving behind to keep expanding that circle.  And if everything is perfect and they never leave, their presence is exponential.

I can list off dozens of people who I swore would be my friend forever and who aren’t around anymore.  But I can also list off the people I’ve met through them.  I can tell you how Bob introduced me to Sherri, who is one of the most caring loyal friends I’ve ever had.  I can tell you how I met Hannah through some people whose names I don’t even remember, and now she’s the person who I think has the most faith in me of anyone I know.  I can tell  you how Emma introduced me to Jason, and they introduced me to Jen, who is in D.C. now, but she introduced me to D’Vaughn, who was one of my best roommates ever. I can’t say that any of these people will still be around in five or ten years. Of course I would love it if they were, but I would also love it if they did what made them happy and helped them grow, no matter what it meant for me. I’m not worried about if or when our trajectories will split, because they are great connectors, and I know every time I’m out with them I’m likely to meet someone who could become my next BFF.

I can’t promise anyone that I’m introducing them to someone who will be around forever.  But I can suggest that they look at people not as the finish lines of friendship, but as the support to help you keep moving forward. I can help someone work through the fear behind “when will they leave?” and ask the more hopeful “Is there anyone you know you could invite to join you guys?” I still don’t know how to make individual friendships sustainable, but I do know how to make them exponential, and I know that growing and building is better than sustaining any day.

I arrived twenty five minutes early, though they suggested fifteen on their website, and I turned the knob to the yoga studio. Locked, lights out, I sat on a plastic chair outside the room. Holding my gift certificate for the five-class pass, I considered leaving, knowing no one had seen me yet, and no one was there anyway.  I wandered the halls a bit, looking too interested in flyers for Royal Travel, for a packaging company, for a chiropractor, walking the steps to kill the extra time I had built in so as not to be late.

Finally, a petite, muscular woman arrived, unlocked the door and said “You can come in whenever.” “Thanks” I said, not wanting to be that woman who was still 15 minutes early to a class, I continued to sit and look very busy checking email on my phone.

Finally, I mustered up the courage to be the first one to arrive at the class (other than the instructor) and walked in. The instructor was polite enough, sign here, here and here, mats are there, grab two blankets, a yoga block, bathroom is there, water is here, take your shoes off, hang your coat there, line your mat here, we’ll start facing each other, then it’ll be lined this way. It was a lot of information for a first timer, even someone who earns a salary helping people do new things and meet new people. “Okay” I said, trying to be confident. I’d been to yoga studios before, but I’d never been to this one.

I filled out the paperwork, grabbed a mat, the blankets, hung up my coat, and began to set up. “We’re in a shoe-free zone.” Muscular instructor said without looking up from her computer. Right. She had said that, along with the list of other things I was supposed to remember. Why was I so nervous? Who doesn’t know to take off their shoes for a yoga class?

Beth, a fellow 20-week pregnant lady arrived, also early, and I overheard she and muscular instructor talk—she slowed down on the instructions this time, perhaps due to my inability to follow all of her list correctly. Beth took off her shoes, hung up her coat, filled out her paperwork, grabbed a mat, two blankets, a block, and sat next to me. We smiled politely. I wasn’t sure if talking before a yoga class was permitted, it wasn’t on the list of things to do, so the silence hung in the air.

Next, super fit pregnant lady arrived. She and muscular instructor must have known each other because the silence was immediately broken with chatter. Super fit pregnant lady just found out she was going to have a girl and muscular instructor exclaimed that she had a feeling this time was a girl for her. They’ve clearly taken other pregnant classes together, and were happy to reconnect over the good news.

Beth and I sat, with our legs crossed awkwardly on the floor next to each other. I wondered if she was also thinking about feigning some illness or important phone call.  She fidgeted with her socked feet, and I stared out the window.  There was still time to escape, but neither of us were brave enough to leave.

As others arrived more confidently that Beth and myself, the room relaxed a bit.  I took mental notes comparing their stylish yoga wear to my lacking outfit.  Apparently neon is the new black, and fitted yoga tops are the rage for pregnant fitness gurus.  Small talk was made by some regulars, silence by others.

Eventually, the class began with a round of say your name, expected due date, and things you wanted to get out of the class.  Having facilitated groups, I recognized the technique of getting people talking, and having done it myself to others, was a little annoyed it was happening to me.  (I thought this was just an exercise class!)  Nonetheless, when it was my turn, I obliged.  Jo taught us in our own facilitation series at Starfire that rarely will someone be the person that says “pass” when it’s not that hard of question.  She was right.

Muscular instructor led us through some stretches, positions, and breathing for about 20 minutes.  “Next” she said “grab a partner.”  Beth and I quickly shot glances at each other, eyebrows raised.  Though not clairvoyant, I could tell her she was thinking what I was thinking and was as put off by the idea of “partnering up” as I was.  We smiled and chose each other, having found some sort of unspoken comfort in each others discomfort.  (It reminded me of “choose a person you know the least” and I immediately had sympathy for anyone who ever attended a strategic planning session in 2010.)  Muscular instructor informed us that we would be grasping each others hands, supporting each others weight, and lowering our bodies to the ground through squats, repeatedly…and go.

Pretty much this, multiple times, with a pregnant, sweaty-hand, stranger:

We grasped hands awkwardly.  And did as we were told.  As two of the only apparent newbies in the class we weren’t very good, and muscular instructor made note of it, aloud.  “You’re not really leaning back, Beth & Candice.”  (She’d remembered our names and was comfortable using them in front of the class.)  “You need to support each other more.”

As 7:00PM rolled around, I was grateful for it being a one hour class and for the laying down positions, the ones where you’re supposed to be in some sort of deep reflection at peace with the world.  I was more concerned with how quickly I could leave, and that at these position were eyes closed positions.  As we ohmed and namaste’d each other, I was happy to be excused.

Being new was hard.  It was difficult to go alone to a place I’d never been and learn all the rules and norms.  I felt out of place when everyone else already knew the routine.  Relying on a stranger to support  you was uncomfortable.  Neither of us really let the other hold our weight– we were too unsure of each other to trust that we wouldn’t collapse our pregnant bodies to the floor.  We barely knew each other.

Each day we ask people, their families, coworkers to have conversations, forge new relationships, get involved, create new projects, and change the world!  In stories on Cincibility, it often seems so lovely, groups of strangers coming together to create beer tastings, musicals, unique works of art together, and more.  It looks easy even in the photos.  Having been new, I know that it’s not that easy and the class was a great reminder at the time it takes to get comfortable doing something you’re uncomfortable with.  But, getting started is always the hardest part.

Wednesday is another class and I’m hoping a little bit that Beth returns.  I’m hoping that Beth will recognize me, and that we’ll be partners again.  I hope we won’t be the new people this time around.

And I really hope we don’t have to do partner squats again.

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

Indian Hill Bridge – December 2012

A Folk Tale About Worlds —reposted from Momastery.com

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

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

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

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

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

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

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

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

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

—-
How does your perspective affect the way you react to situations?
What are you hoping to think differently about this year?
What negative feelings are you leaving behind in 2013?

Americorps volunteers and Sisters of Notre Dame have dedicated years (and for some, their entire lives) to the service of others. Over the years Starfire has had our own fair share of support and love from Americorps and Public Allies, and many of our staff are alumni.

This year, Tabitha and Emily are leading an effort to record the many experiences of these volunteers, and should have a beautiful collection when it’s all said and done.

Here’s a snippet from one of their interviews with an Americorps volunteer who moved away from his home to work at an elementary school in a tiny coal mining town, population: 406.

If you’d like to share your story with Tabitha and Emily, get in touch by emailing – emily@starfirecouncil.org

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

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

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

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

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

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

“Because he was a good staff” he replied.

….

At a recent event, “Samantha” attended with her staff from her apartment.  The staff didn’t put on a name tag like everyone else did, didn’t sit with the group, didn’t say much of anything.  The staff sat on the side of the room in a chair like a sullen teenager, her weight shifted to one side, her face down in her phone.  Samantha enjoyed herself anyway, talking to others, enjoying the potluck, happy to have been invited, and happy to have actually been able to attend.

A sign up sheet was passed around towards the end of the night so that everyone could be invited to the next event.  Samantha signed her name but didn’t have an email address, not one that she could remember or spell anyway.  Standing next to her was her staff, keys in hand, ready to leave. “Will you write down your email address so Samantha can get the next invitation?” the staff was asked. “Naw, I’m good” she replied, eyes never raising from her phone.

….

I sat in a meeting once where no less than 4 paid staff members debated which day “Jim” should be doing his laundry.  He’d been “non-compliant” through out his “span date” and was being “defiant” regarding his “daily living skills.” (For those of you reading that aren’t literate in service speak, meetings about someone’s life often sound like this.)

The laundry wasn’t being done according to the day of the week set forth in last year’smeeting.  The plan needed to be amended, since staff couldn’t document that the laundry skill had been reinforced; that goal had not been met, and the skill was not completed 80% of the time.

“Why don’t you do your laundry on Mondays, Jim?” someone finally asked.  Jim said quietly because WWE RAW was on, and he didn’t want to miss it every week just to do laundry.

“Could he do his laundry on Tuesdays instead?  Or Sunday, or any other day of the week then?” I offered.  Yes, Jim’s home staff team decided after some debate.  Jim could do laundry a different day, but if it was changed in the plan, then it would definitely have to happen this year, did Jim understand this?

….

Katie wrote about getting manicures with Abby, and the process not being as “typical” as any other woman going to the salon.  For Abby, it includes weeks of negotiation with various staff and supervisors who manage Abby’s life.  This process is true of Jim, and Samantha, and of the man with Gary for a staff.

The problem here isn’t whether or not people are “good staff” or “bad staff.”  In any given week a staff can be both.  And as a “staff” I have been both in the same week, and both a good staff and a bad staff in the same day.  The problem is the way this system has been designed to micromanage lives, in a way that prevents life (in the ordinary and mundane and in the extraordinary and beautiful ways we know it to happen) in general from happening.  The micromanaged life of a person with a disability by a staff is often an impenetrable fortress built to protect and keep people safe (and sometimes, just keep people busy and scheduled).  The byproduct of the fortress is often a world of isolation and anonymity.

Katie’s example of manicures is a prime one.  Who among us would work for weeks to plan a one hour manicure with a friend if it included numerous emails, phone calls, negotiations with multiple other people, and then making sure that friend came back with a signed receipt and correct change?  We’d just as soon say that a friendship with that person is too difficult, too high maintenance, not worth our time.

Peter Leidy, of Wisconsin posted this link a few weeks back and it tells of the service world making day to day life about as clinical as it can.  The author, a father, writes about the difference between his life, and the way his son’s life is talked about.  “A person’s entire life, everything they do, is jargonized.”  I’d add, in addition to jargonized, a person’s entire life, everything they do, is often overscheduled by services, micromanaged, and clientized, and endlessly documented.  It seems that sometimes, common sense as Jack wrote about and common speak go out the window, once we start thinking about the lives of people with a disabilities.

There’s a lack of creativity in the work that a lot of us do with and for people who experience developmental disabilities.  Certainly it wasn’t too difficult — and it wasn’t in the least bit creative, to think that Jim could do his laundry another day of the week.  But isn’t it also strange to think that he has to have one day a week dedicated to a mundane chore that any of us might put off in exchange for a little entertainment?  It’s not at all creative to think that Samantha’s staff could have written down an email address so that she could be invited.  It’s not that creative to think of ways to make manicures for Abby a little easier with a friend.

It’s as if what is natural, day-to-day and ordinary for me, a person without a disability, has been re-engineered to be complex and difficult for a person with a disability.  Making plans becomes more difficult, getting to and from places more difficult, making choices more difficult, having relationships difficult.

Such is a life according to a rigid plan, one supervised by “good staff.”

In training with connectors, we’re required to do the same training as any other staff would do.  Topics include An Overview of Disabilities, Bill of Rights, Basic Principles of Home & Community Based Services, Confidentiality, Incidents Adversely Affecting Health & Safety of Individuals, Universal Precautions/Bloodborne Pathogens, Emergency Response Procedures, Interactions & Interventions with Individuals.  Also required, a background check, CPR & First Aid training all before any time is even spent with the person a connector will be working with.

The message is confusing.  If you’re training on policy and procedures, safety and precaution, your job is then policy and procedures, safety and precaution.  The job of a staff becomes a series of trainings that depersonalize the very person they will be working with in a very personal way.  This is not to discount safety.  Staff need to know what to do in just in case situations.  And I think everyone should be CPR certified (not just staff of people with disabilities).  But required training doesn’t necessarily include how to do a good job at helping someone live a life we’d like for ourselves.

In the examples of Samantha, and Jim, and with Abby, the staff were “doing their job.”  “Gary” we all want to say was a bad staff.  But that staff wasn’t hitting him, wasn’t stealing money, wasn’t being verbally abusive.  (He was reported nonetheless and a new staff was hired.)  But, it makes your wonder what other kinds of staff people that person had had for him to say that Gary, the one that wouldn’t help him with his showers and watched tv loudly all night was “a good staff”.  “Gary” was a staff worth keeping around in this man’s opinion, despite his obvious flaws.

Samantha’s staff’s job description likely did not include “be personable; look for connections when out; share your email address to get invitation to more events.”  It more likely said “transport individual to and from community outings.  Ensure safety.  Document…”  Or something even more generic like “assist client to become more independent in daily living skills.”

Jim’s staff were also “doing their job” trying to follow the goals in his MyPlan.  Laundry had to be done.  Jim needed to have clean clothes.  However, the plan, in it’s rigidity, didn’t allow for anyone to say, “wait a second, is there a better way we could be doing this?”

How might a staff person support Abby’s friend in making plans with her?  How could they make life a little easier with getting manicures and going out to dinner?  How could they help Abby look like a typical woman, with a purse and a wallet instead of an envelope labeled spending money in marker?

How could staff help Jim get his laundry done and keep watching WWE?  How could staff work to make sure Jim isn’t watching tv alone– are there WWE meet up groups?  Could Jim join one?  Could Jim host WWE viewing parties at his house?

How could Samantha’s staff be curious about others at the potluck, get to know them in an effort to have them get to know Samantha?  Could she share her email and make sure Samantha keeps getting invites?  Could she put away her cell phone for a bit and talk to people with Samantha?

How could “Gary” the staff understand his job was not babysitting, but providing thoughtful care to someone deserving of respect?

However, in all the above examples, the hypothetical questions are just that.  In reality, it’s not a “staff’s job” to help make friends, help life be a little more typical, nor is it their job to write their email address down if the person they support doesn’t have one.  None of this is explicitly said training when you begin– to go beyond safety and precautions and really work towards what matters: a good, full life.

The message staff first receive is a lengthy training not in how to get to know a person better, make time together make sense and be productive towards supporting someone in having good life, but rather to document, ensure safety, and check off a list of services provided towards daily living skills.

We’re doing a huge disservice to Samantha, Abby, and Jim.  And to staff people whose jobs have become disrespected, and demonized.

We can do better.
___________________________________________
Part 2 will include stories of “good staff” who work beyond the safety and precautions and required training to work with a person towards a good life and how they’ve come to understand their roles as part of something bigger.

We arrived 10 minutes early, not sure if anyone would remember that Douglas’ first day was coming up on Saturday, and not really sure if the all staff message was meant to include him.  It was sent to everyone but being an electronic scheduling system we weren’t sure if Douglas was expected at the meeting.  Nevertheless, we made a point to attend, telling ourselves at least it would be an opportunity to pick up a few names and faces before Saturday, make a good impression.

A few people gathered around the outdoor picnic tables talking about last weekend’s unexpected rush that lined the sidewalk, and the impeccable taste of the pork and coleslaw that day.

“Is the meeting here at 3?”  I asked.

A woman said “Yep.  a staff meeting” and she went back to reviewing her notes scrawled in a composition notebook, preparing for the meeting.

“Sup Douglas?  Thanks for the card you sent me”  Elias said.

Douglas nodded and shyly smiled.  He was nervous on the drive over and the attention of someone knowing his name caught him by surprise.

A few weeks back Douglas was hired at Eli’s BBQ through an acquaintance that Katie had.  There was a message on Facebook a while back that said they were looking for help, and we knew that Douglas’ resume included experience in the restaurant industry.  Being a foodie himself with a taste for good food, we pursued the opportunity.

Douglas was hired, and with his mom, Paula’s assistance, they were sure to send a thank you card for the opportunity.  We were now getting close to the big first day after a few weeks of back and forth paperwork, schedule negotiation and all the detail grit work that goes into starting a new job.

The staff meeting began as any other, people walking in late, people scattered about the tables in their cliques of co-worker friends, a few with visible tattoos, and a varied collection of people wearing cool t-shirts and aprons smeared with BBQ sauce and smudges from the grill.

Douglas wore a black polo and cargo khaki shorts.  He and his gym shoes fit in with everyone else.  Casual.  Relaxed.  Ready to work.

“People hug me after literally every catering event” one man said during the meeting, laughing.

Elias, the owner, and namesake for Eli’s BBQ, chimed in.  “That’s because catering food usually sucks.  You get the ranch and the roll and you try to make them last between the crap meal in between.  That’s not what we give people though.  This is good food.”

“You’re right.  People absolutely love us.  We should be proud.  You should be proud of  your work.”  Another man said, with a prominent pork tattoo featured on his forearm.  A man obviously proud of his craft.

Douglas gets to be a part of the roll and the ranch and the good (and bad) stuff in between starting Saturday as an employee of Eli’s BBQ.  The work of how to include people isn’t a tricky business, but it does take creative asks and an honest conversation.

“What do you need from us?  Anything special we need to do?” the manager, Eric, asked me over the phone a few weeks prior.

“Not really.”  I assured him and we talked about treating Douglas the same as any other employee but with a little grace and some gentle reminders.  (I bluntly reminded him that while Douglas does have a disability, he shouldn’t have special rules when it comes to doing the job he was hired to do.  It also meant that he might need some directions repeated and some assistance to learn all the tasks that will be new to him.  Eric, the manager, needed to know that Douglas doesn’t drive and has to rely on family or county funded transportation to get to and from work.  And while we would do our best to make sure he was never late, how frustrating would it be to not be able to drive to make sure you got somewhere on time?)  The manager understood and was happy to have an honest conversation about what was needed and expected to make sure everyone was successful.  These are things people don’t know about the lives of people with disabilities, but these are the important things that are okay to say.

50West has a list for Michael.  It includes such rules as “high-fives are just fine” and “no yelling in the bar”  and “memorize all table numbers.”  Things Michael needs to know and needs to be reminded about.  These things that are okay to say to him to make sure he’s doing his job, and make sure people get a good impression of the brewery (and of him.)

Eli’s BBQ will figure out their pace and way to be inclusive, too.  So far, the nonchalance, the-welcome-aboard-new-guy-attitude seemed seamlessly inclusive with a good dose of ambivalence.  People said hey but didn’t fawn over the new guy.  Douglas, a naturally shy guy, appreciated the “sup” and the lack of commotion over him starting.  (No new guy wants to draw unnecessary attention to himself at an all staff meeting.)  But, he will be apart of a team– the roll, the ranch, and the sweet meal in between.

______________________________________

If you’ve not yet tried Eli’s BBQ:
Open 7 Days a Week 11AM – 9PM
3313 Riverside Drive, Cincinnati, OH 45226
Cash only. (and you don’t need too much of it!)

Eli’s BBQ

Go ahead, hit play and listen while you read:

Scott’s a pianist, and a member of the ATOS (American Theatre Organ Society) and the AGO (American Guild of Organists). Never having taken a music lesson, he learned from his mom and began to play by ear at a young age. He would practice on the Emery Theatre’s Wurlizter organ, before the theatre closed down in 1999. Scott’s passion for the organ is only matched by his year-round love of Christmas.

“Music directors don’t usually let just anyone play their organs,” his friend John told me. “It was kinda like pulling teeth trying to find one in the city that Scott could play.”

We pull up to the Christ’s Community Church in Price Hill and wait for Amy and Chris, a couple of Westsiders who offered to let us into the church midday. The church was built in 1886, and stands today a mammoth, brick structure, with tall, tall windows of stained glass. It dons an impenetrable holiness over the neighborhood.

“The music director here has been trying to find someone to play this organ for over a year,” Chris tells us as he walks up the steps to unlock the church.

We walk past the words: “THE HILL IS ALIVE”, painted in rainbow fashion on the blacktop beside the church. It feels like a covert operation, getting let into a vacant church – for the sake of music.

“What kind of organ is it?” Scott asks, anticipating the moment he can sit down and put his hands on the keys, his feet on the pedals.

“I’m not sure!”

“It’s an old one!” the couple chime.

He’ll need to find a brass ensemble and choir soon, if he is to turn this old organ into the star of a Christmas show, as he plans. But for now, he’ll get the organ back in shape and worry about finding sopranos, altos, baritones, flutists, trombone and tuba players, later.

Outside, the neighborhood has come to a quiet, still halt. The blacktop radiates under the unrelenting, midwestern sun, and pedestrians move like molasses on the sidewalks. Inside, we creak our way up the stairs to arrive at the entrance to the sanctuary.

“One generation will commend your works to another… Psalm 145:4,” reads a quote, framed beside the church’s double doors.

Our eyes capture the glory of the architecture, the hanging medieval style lanterns, the raised altar, the choir loft, scanning every corner to locate the organ. There it is, we point, and like a pack of tourists, we move toward it.

Closed in its wooden case, a beast in hibernation, it is a somber, dusty mass of polished wood. The air grows thick as Scott settles in, slipping off his shoes to play the pedals.

The necessary nobs get a twist and buttons a punch, and slowly the organ pipes emerge from behind their wooden shutters. The keys and stops fan around Scott like a generous embrace from a sophisticated and distant relative.

I blink and my eyes stare off, looking deeply into the carpet below, watching as the sound of worship, celebration, rebirth surrounds us, the chords bellowing into my chest.

Aside from our motley crew, it seems a pity that no one else is there to bear witness. The pews try their best to look more like a potential audience than empty row upon empty row. The dust and sunlight pouring in from the warmth of the colored glass dance about, attempting to be part of this unique spectacle. The statue of Mary whispers to Cecilia, the patron saint of music, “Hear it!? Do you hear that? Stand tall, the organ is being reborn! O Bethlehem! O Faithful! Hark, angels sing!”

“An inspirational day,” the couple tells us before they head a few blocks away, back to their home. A bit of hope in a neighborhood where rainbows painted on pavement represent the site of a homicide, where the hot sun bakes on crumbling roofs, on half burnt houses.

So we took pause, for the sake of Scott’s passion and nothing else, and perhaps, if we let the music move us so, we left feeling a little more alive.

Scott is looking for a brass ensemble, choir, and other organizers (musically inclined or not!) in the Price Hill area willing to work together to put on a Christmas show this year during the annual “Holiday on the Hill.” Please contact John for more information: john@starfirecouncil.org

join Scott for a Christmas concert!

If you’ve missed the onslaught of posts about Cincinnati being burdensome on new people to make new friends, and a response about our “inbred smugness” count yourself among the lucky ones who didn’t have to read the asinine back and forth online commentary of “no we’re not” and “yes we are” bouncing back and forth totaling over 190 individual comments like children pushing responsibility on to someone else.  This recent post was an actually interesting Citybeat follow up but all of these articles point to the issue of friendship, neighborliness, and the human desire to not be alone.

In a frustrating email to fellow co-workers about these nonstop Cincinnati identity articles that keep popping up, articles like those mentioned above, and articles like 31 Ways You Can Tell You’re From Cincinnati and this and this I threatened to write my own version of how to tell you’re from the city you’re from (and I might!)

Allie responded that a post that did need to be written was one about relationships, a defense of Cincinnati, and in defense of personal responsibility in making friends.  I had to share her wisdom here:

I was thinking this could also be a good time for a post about the idea of personal responsibility in making friends.  Like, how many of us have thought “why won’t anyone talk to me,” then when we started doing this work, realized that’s what everyone is thinking and we’re all just walking around alone, wanting friends, and wondering why nobody will talk to us.

We get so focused on waiting for someone else to initiate a conversation that our brains miss the fact that we could be that someone.

Maybe we’re not a smug city; maybe we’re just a city of waiters, because humans are waiters.  These articles aren’t about people who are or are not included, they’re articles about a bunch of people who are waiting for someone to step up and be ‘the Nice Expert.’  They just need people like us to tell them the only difference between someone who feels isolated and someone who is a Nice Expert is the bravery and what-the-hell mentality to start a conversation or toss out an invitation.

So, to follow up Allie’s words — friendship and connectedness is not a secret science.  There is no mysterious formula that natives in the city of Cincinnati are keeping from outsiders.  It’s not a matter of family legacies in the Queen City, which high school you went to, or unfriendly churches, exclusive mom clubs/book clubs/running groups/PTAs.  Sure, all of those things exist, and all of those things exist in every city.

I think a lot of us at Starfire have learned that many people are just waiting to be invited.  Friendship comes with a certain dose of chance and spontaneity, and a big commitment to saying yes.

The next time you’re wondering why you don’t have plans, didn’t get invited, weren’t asked to coffee, didn’t get cookies on your doorstep from neighbors perhaps take a step forward to make the plans yourself, make the invitation to others, ask someone to coffee, and bake some damn cookies to share.

We heard from so many brilliant Cincinnatians tonight – genuine changemakers, working to make a difference in their own big and small ways. Here’s a glimpse at 10 (okay, 10 plus their team – no one does this stuff alone!) of the many great people who we will be hearing from over the next two days. Hope you can make it!

1. John Orr

John will speak to his journey with mindfulness practice. Mindfulness, he reminds us, is both a simple and ancient practice that can have a strong impact on our sense of connectedness, happiness, and overall well-being. John will be giving a crash-course on how to integrate this into your own life.

“Mindfulness can move you closer to the beauty of life.  It can give you the power to choose how you respond to fear and cynicism when it does arise.”

Mindfulness guru

2. Judi Winall

Laughter yoga was developed by a medical doctor in Mumbai in 1995, and is now a world-wide movement. Judi will instruct on how to laugh as an exercise, not as an emotion, so you can do it anytime, anywhere, with anybody.

“Laughter is one of the most powerful way you can counteract the stress in our lives — it makes us happier, healthier, and wise. And plus it’s free.”

laughter yoga guide

3. Aaron Kent

Owner and operator of DIY Printing, a silk screening coop for artists and the community.  Aaron will be hosting a screen printing class at his shop in Essex Studios, where people will be able to design, print, and bring home a 3Day t-shirt! People are invited to bring their own t-shirts, and DIY will be donating a box of their own.

“DIYs doors are open to artists and community-oriented businesses and people.”

artist, screen printer

4. Kathy Wenning

Hear from a powerful mother who has been on a journey that began down the service-centered road, and has recently turned a new corner toward gifts and potentials. Now, what disability once meant to her son’s identity and their family’s life has changed, and she’ll share what it’s been like to be on that ride.

“No matter who you are, you can contribute and help someone that you already know, have a better life.”

parent and community builder

5. Denny Burger, Daniel Kilcoyne, and Jess Linz

Telling stories about the good people they have met this past year as community interviewers, this group will discuss what it’s like to seek out the gifts of your neighbors, and “find the sweet spots” that exist in our neighborhoods. You can find them and other interviewers each month at Starfire’s gatherings where they share the stories that they’ve collected.

“We’ll impart to you secret knowledge about how to network, how to connect in our greater community.”

Starfire’s community interviewers

6. Vonceil Brown and Jori Cotton

Vonceil and Jori will be talking about their work together as spoken artists at the organization Elementz Hip Hop Youth Center. The two collaborated with Public Allies Cincinnati last year to create a spoken word showcase in the city, and hope to continue the event forward in future years.

“I think of it as revolutionary, because a lot of spoken word artists talk about things that are going on in the world.  It’s a great way to speak up for the underdog.”

spoken word artist

7. Roanne Lee

Leader at the Awesome Foundation — an organization helping to fund awesome ideas. Roanne will be hosting a session to help people brainstorm awesome ideas together. ‘Nuff said.

“The crazier it is, the weirder it is, the better it is. We can all think of really awesome ideas, really there’s infinite possibility.”

awesome person from the awesome foundation

8. Kristen Barker

Working to create “family-sustaining jobs” in Cincinnati. She is involved with supporting a range of community efforts, from a farm in College Hill providing food to families and the neighborhood, to a healthy bakery initiative called “Yucky Cookies.” A model passed on from the Mondragon Corporation, Kristen is helping Cincinnati be a leader in the worker-owned cooperative movement.

“It’s about putting people above profit.”

leader of Cincinnati Union Coop Initiative (C.U.C.I)

9. Kim Popa

Building community through movement and dance, Pones Inc. dancer will be inviting people to – well, dance! Headphones will be offered that playing really simple dance instructions. May take place at Starfire- or out in public for more of an adventure!

“If you’re nervous, and you feel like, ‘I’m not a dancer, I’m not gonna do it,’ then I invite you to definitely come.”

Dancer, mover, shaker enthusiast

10.  Dustin Lee

Dustin is helping to lead the urban garden movement in Avondale. Community and home vegetable gardening discussion – that will be starting at Starfire, then move on to Gabrielle’s Garden to “get our hands dirty!”

urban gardener

YOUR STORY GOES HERE.

your story.

 Join us tomorrow and Thursday – there is still plenty of space and time on our calendar for you to fill it with your own story of hope, community, and love!

OPEN SOURCE SCHEDULE (so far)…

Wednesday, Aug 28th from 3p-8:30p

3:00-4:00
Vinyl Listening Party & Record Swap
Valued Social Roles

4:15-5:15
Cincinnati Naturalist Society
Positive Thinking
Listening Partnerships
Valued Social Roles (continued)
Art & Painting
How to Start a Neighborhood Bike Ride

5:15-6:15
Free Dinner!

6:15-7:15
Faith Inclusion
Awesome Ideas by Awesome Foundation
Cincibility Podcasting
Pones Inc. Dance Community
Fantasy Football
Values in Action

7:30-8:30
Mindfulness
Intentional Family Building
Laughter Yoga

8:30-9:00
Open!

Check back in for Thursday’s schedule: Aug 29th from 3p-8:30p

Where: 5030 Oaklawn Drive, Cincinnati, OH 45227

Find out more on Facebook

The narrative in this video was prompted by a study done in the 90s by one of our great thinkers, Jack Pealer. So, to honor Jack, and in preparation for our 3Day community gathering kicking-off tonight, I thought it good timing to share one of his posts written on this very topic around community and isolation. Thanks Jack. Hope to see some of our Cincibility followers at the 3Day!

——————————————-

The Utility of Common Sense

“We’ll have to keep working to avoid the general judgment that some people should be gathered up and put somewhere else to get help.”  -Jack Pealer

Is “common sense” useful to those who want to support richer lives for people with disabilities?  Seems like it should be.  After all, much of the richness that we’re trying to enable people to experience is found, we say, in the varied patterns and textures of that locus of our existence we call “community.”  Communities, by definition, work better when they are governed by commonly agreed upon ideas—common expectations and experiences.  Shouldn’t that mean that this “common sense” that supports community life will also support those members who have disabilities?

Sometimes yes and sometimes no.

Let’s look at the yes-examples first.  Over the years I’ve often found myself facilitating meetings where a person with disability, her/his family, friends, and other supporters were trying to describe a bright future and to figure out the best ways for that future to happen.  A remarkable thing about those meetings is that the people who come to them really listen—sometimes for the first time—to the person who is the meeting’s focus.  Participants really work to understand the interests, the wants of that person, and they try to develop a vision that captures those interests.  Most often the visions and plans that issue from these gatherings are rooted in common sense.  That is, the ideas that develop are usually self-evidently rational for this person at this time in his/her life.

Common sense is the process at work when people understand, for example, that this person a) can’t stand living in a big group any longer or b) won’t be helped by coming to a workshop or day program every day or c) needs a personal relationship that lasts with one (or more) others.  In this context, common sense is what leads planners toward the sort of plain inferences that have sometimes resulted in big changes in the lives of some people.  So, at least one kind of common sense—the kind the Oxford English Dictionary (OED) defines as “… the plain wisdom which is every man’s inheritance”—does offer support to people with disabilities.

But there are other meanings of common sense, and those offer less comfort.  For example, the OED also defines common sense as “… the general sense, feeling, or judgment of a community.”  The idea is that communities tend to hold some ideas in common, including ideas about themselves—who “we” are—and about other people—who is “not us.”  This version of common sense can attack the potential membership of people with disabilities.  Wolf Wolfensberger (author of social role valorization) described the common sense of communities about people who are judged to be “not us;” this description took the form of a catalog of “common negative social roles imposed on societally devalued people” (see A Brief Introduction to Social Role Valorization).

Among the roles listed in this catalog are those that describe some people as “sub-human/animal” and “burden of charity.”  Common sense—as unconscious but real community judgment—is what led me and other officials of a community where I once lived to decide that the right place where children with disabilities (only) should go to school was a location seven miles from town next to the county poor farm and animal shelter.  Wolfensberger’s list of devalued social roles also includes that of “menace or object of dread.”  Common sense—the general feeling of a community—is what led countless citizens of neighborhoods across North America to abandon civility and oppose, sometimes with violence, the presence of people with disabilities as their neighbors.

Some years ago, I sat working in an office of a school that was open only to children with disabilities.  A car pulled up outside.  A man got out, lifted from the back seat a cardboard box, and carried the box into the school.  Coming into the office, he explained that he was from the local (community) Elks or VFW or American Legion Post.  I forget which.  His group had sponsored an Easter party a week before—a party for the children of group members.  They had candy left over.  Would “these” children like to have it?  The candy was accepted; he returned to his car and drove away.  I thought then that it was possible that he drove past several other schools on his mission to deliver left over candy.  There are other schools in our town.  But, something that we might call his common sense (the general judgment of our community) about difference and the exclusion that communities say must accompany it led him to this school and “these” children.

We need to think carefully about the extent to which common sense—our own and that of our fellow citizens—can be trusted as a guide for helping and supporting people with disabilities toward richer lives.  On one hand, if I’m trying to assist one person whom I’ve come to know—and if I’m doing so together with others who also know and care about the person—I think I’d be trustworthy, most of the time.  Common sense is a useful guide when it’s informed by relationship and affection.

On the other hand, if I’m considering how to support a group of people with disabilities (or a “batch,” as sociologist Erving Goffman named the unconscious view often held of such collectivities), the general community judgment about those people may not be of use—may actually turn my attempts to help in quite harmful directions.  Given the history of organized services, we should view with suspicion what seems to a community to be “common sense” about how it assists groups of people whom community members have learned to understand as “not us”.

But, for as far ahead as I can see, communities will use organized services as their main tools to try to help groups of people.  And that means that those who want to support people with disabilities toward richer lives have to stay alert about appeals to common sense.  We’ll have to keep working to avoid the general judgment that some people should be gathered up and put somewhere else to get help.  We need a preference for the plain wisdom that grows from meeting each person where she/he is and connecting that person with other citizens who share her/his interests and who will become devoted to her/his participation and membership with all the rest of us.

Meet Joe. Living with the label of disability, his social network looks significantly different than most.

Joe has his family. Just like most of us, at the end of the day, there’s never enough family.

Teachers, barbers, dentists, accountants, make up part of the people paid to be in Joe’s life, but the majority are direct support staff, who he spends a lot of time with. He can rely on them for services, but they are often in his life temporarily,

But out of everyone in Joe’s life, close friends and acquaintances, people he runs into occasionally like neighbors or the clerk at his local movie store, are the smallest number by far.

Finding friends is an unpredictable road that can be tricky for anybody. It takes the perfect combination of common interests, shared places, mutual respect, and a touch of serendipity. Put all the pieces together, and sometimes there’s a spark, one that none of us can predict.

From the time he was first labeled with a disability, Joe’s life has been planned out for him. It often led to him being placed in separate programs, away from everyday life. While this was planned by a well-meaning society, it has meant that Joe has to work a little harder to build his social than others.

Now Joe and his family are on the road to turning this picture around by drawing on Joe’s passion for history to build natural relationships. Joe and his mom spend time in conversation with people, visiting with people who love history too, hoping to make connections over time that will lead to doing stuff together, or collaborating on a community project, so that maybe they will find that spark of serendipity that can lead to more people in Joe’s life.

Based on Jack Pealer’s 1990 study on 51 people with disabilities’ social network, and the similar reality that many people with disabilities still face today. Art and narrative by Brandon Black, Jennifer Bradley, and Jon Gray.

It’s all about connections.

This past month I made it to one of our community gatherings at Beans and Grapes. We started the conversation off with a great list of what’s happening in our lives that’s new and good.  On that list were things like:

“I started a new job!”

“I found a home for my iguana!”

“We met my brother’s girlfriend!”

the new and good stuff happening (left), and why community is important (right)

It was all such ordinary, and in its simplicity, beautiful stuff. Then we made another list about why community is important to each of us.  That list about blew me away, it was so full of authenticity and wisdom, and it came straight from the mouths of the plain citizens sitting in our tiny semi-circle.  The list read something like:

Community is important to me because…

“it’s about being intentional, getting along with others, understanding my neighborhood’s history, potential friendships, makes room for playfulness, anyone can join, when you know your neighbors there are less frustrations, it’s powerful, asks us to be authentic, gets us doing things together, promotes safety, can be unexpected, other people helps us navigate through new things in life…..”

our semi-circle of community builders

After that, we turned to a new page and made one final list. It was the list of “do’s”. We answered the question, “What can we do now to help our neighbors and communities become more tightly woven, or what have we already started doing?” Again, simple stuff, but powerful actions when the alternative for many is sticking to our comfort zone.

Do’s:

“Joined a book/bike club!”

“Will finally meet the neighbors across the street!”

“This month is dinner at my place with the new neighbors.”

the “do” list

By the end of our time together, one woman looked back on our three lists and reflected, “It really is all about making connections.”

She then admitted, “I had a hard time coming here tonight, I just felt like I had so much other stuff to do at home, I get like that with these gatherings. But by the end, I’m always glad I came.”

Candice chimed in, “Yeah, I have a similar feeling, sometimes I’ll dread having to facilitate, but as soon as I get here I feel glad I came, it gives me energy to be with all of you.”

In my mind I thought, “yep, I can totally relate.” Feeling somewhat ashamed to admit it, I realized how this is such a universal feeling that we all experience before doing something new, or that requires us to step outside of the box.

Which reminded me, of the time I became an English teacher overnight in a city tucked away in the beautiful former Yugoslavia….. I was living in a hotel room above a gas station when I found I’d be teaching a university level class in less than a month, having no prior experience or a clue about teaching. Here’s that story.

– part two –

First comes dread.

It gripped me right before class. Utter, complete, total dread. I would pace around my apartment, shoving random pens and notebooks into my teacher bag, all the while talking myself into going. I would see the 4 dozen eyeballs staring at me in my mind. I was to stand in front of 25 students and perform, poised, calm, informative – the way a teacher does.

“Perform what!?” I would huff to myself, exasperated, still packing random pieces of chalk and extra tissues into my increasingly heavy teacher bag. “I’m not a teacher! What do they expect!?”

I was there on a ten month scholarship, one I applied for (admittedly) so that I could travel back to the Balkans – a place I fell in love with as a study abroad student in college.  Winning the scholarship meant an all expenses paid adventure, in exchange for my assistance at a local University in Štip, Macedonia.  How hard could that be? Reading the oral exams, helping grade essays, lending a hand here and there while the teacher made the lesson plans and did the lecturing.  I would simply – assist. The rest of the time would be me traipsing around a new place with a map and some bus tickets, with not a care in the world.

As soon as I realized that being a teaching “assistant” meant something quite different, the dread began to sink in. My first interaction with the teachers I was there to assist felt like a bless and release.  They told me I’d be working in 5 classes, with 20-30 students per class. I’d was to hold the students attention for 2 hours with lessons on writing and speaking. Each teacher was generous with their advice, they gave me papers, workbooks, and various materials to work from, but in the end I was completely unprepared for what was to come.

Starting somewhere.

I had a month to prepare before classes actually started. I started by pouring over the worksheets and scribbled notes I took during our crash course on teaching all the grantees got in D.C. during our orientation. Then I used Skype to call my sister, who was a teacher at the time in Korea, and rambled, vented, and generally dribbled on about how I am totally not a teacher, am never going to make it through the school year, and pleaded with her to impart on me everything she had learned about teaching during her first 5 years in the profession.

She tried her best to listen and calm my nerves.  In the end, the best teacher advice she gave me was to have a sense of humor about the whole thing. She recommended I read Frank McCourt’s Teacher Man – so I downloaded it that night on audio and began listening. The book didn’t help me gain any better grasp on what the hell to do in the classroom, but it did make me lighten up a bit. I listened intently to his funny anecdotes on all the times he screwed up as a new teacher. Like medicine, the stories came to me like doses of bittersweet anticipation for my own mistakes to come.

Dread usually had the last laugh though. My gratitude to Frank McCourt, but I think he’d understand I needed more than just a lighthearted perspective to get through my fear of the unknown. So I crossed off the days before the school year began, and figured that once I knew how bad it really was, I could stop being so afraid and at least know what to expect.

What happens if you just show up?

On my first day of class, I took a picture of myself in the mirror. I guess kids these days (wink) call it this a selfie. I guess I thought of it as a mark in time.

first day of teaching

“I look like a teacher!” I said to myself.  Then I heard it, crawling out of the reflection of myself and into my bones, loud and clear: twisting my stomach into knots, attempting to feed me a better solution than walking out my door, “Why not stay home? Write an email, you’re sick. Stay, rest. Plan your escape.”

I ignored it. I walked outside my hotel room above the gas station, and made my way to teach. Like anything I’d done before that was new and scary, I knew if I just showed up, if I just made it to class and started teaching, the dread would subside for a bit.  It was my mantra: Just show up. Get there. Get out of bed, get out of your door. Just show up.

Eventually, the chalk prints on my pants, the looks I got when I showed up with different colored socks, the hurried walk down the steep cobblestone streets to arrive just on time for class a sweaty, flustered mess, all of that became routine, expected, normal. And despite this, being slightly lost and disheveled, in the midst of it I found myself doing what I thought I could never do. I was teaching.

Doing is a beautiful, beautiful thing.

Out of the impossible rubble that was dread, I emerged a teacher. And from that came camaraderie with the students in the room. I came to know their stories. I learned about their dreams. I heard their opinions on the education system, on Hollywood actors, on the protests happening in Tunisia as the Arab spring grew eminent, and I told them what it was like growing up in the midwest.  I taught writing – not by the books, or based on some course material – but what I knew about it.

Transitions, thesis statements, 5 paragraph essays, I knew the basics well enough to begin introducing these concepts to them. Living in a country with a 31% unemployment rate, many felt discouraged, despondent. I wanted to give them something useful. As I got to know their hopes and dreams, I realized how becoming better writers could mean their ticket into grad school, or a job abroad, or maybe more confidence when they became teachers themselves. There was no time to waste, they had their lives ahead of them. My grandiose optimism was met by many unimpressed faces, but in it I had found my drive, and I had found purpose in my teaching that would take me to the end of the year.

Out of my comfort zone, away from the norm, as messy as it may have felt at the time, in the middle of the chaos I found myself focused on what was tangible. Then, the unexpected bonus happened – and that was watching the true writers in the class coming out of the cracks in the chaos.

Dread never tells you about the unanticipated goodness to come.

One guy I remember, his hair gelled, his jacket a crisp leather, his attention in class that of a cactus. The first time I read his essay I had to check the name twice. It was written in such a voice, authentic, captivating, I found myself chuckling at certain passages and leaning in to read more closely others.  Just like his personal style, his presentation on the page said, “I don’t give a fuck.” He’d turn it in late, without excuse, in hardly legible handwriting, and ignore me the rest of the class unless he had something snarky to say.

I decided I’d read his essay out loud one day. I prefaced with, “Darko has a secret, and he doesn’t want anyone to know this.  He is a writer.” I watched as his classmates look at him, then back at me as I read, and some began to see him differently. They laughed. They scratched their heads. I shed some light his way, though he winced at the spotlight.

Another student, who spoke English in a smooth and steady British accent, was absent nearly every class. At first this offended me, and made me feel taken advantage of.  But she was a puzzle. When she was present, she challenged the status quo with her comments, she was the most engaged person in the room. Her first essay assignment brought more to the table than I’d expected. She wrote about driving her mom to and from the big city, holding her hand in the waiting room, fighting with the doctors for better answers, while she received chemotherapy.  Then, driving back in silence, her mom sick the whole way home, she would make it to class when she could. I realized how life goes on outside of the classroom, and how very important it is to set aside the rules sometimes and just listen to people. Eva has recently started a fantastic blog — you can read here.

Sometimes dreading precludes doing, and that’s okay. In fact, maybe that’s how it often should be.

Would I go back to teaching? I give that question an affirmative: NO. Not because I’d dread it, but because (and teachers, I salute you) I realized I am not cut out for that work, it’s damn hard!  But people like Darko and Eva and the 100 other college students I met gave me another piece of myself to discover, through the reflection I saw in their eyes. I did something that scared the crap out of me, and it gave me confidence. I try to make sure now that doing things I dread a whole bunch are on my list of “things to do” at least regularly – if not always. Dread is tricky, it maybe gets a bad rap, because so often it turns into excitement, drive, and motivation. If you think about it, perhaps they are the same thing anyway. Dread – and excitement.

thank you Colin Newton and Jack Pearpoint for introducing this tool to us at the Toronto Summer Institute on inclusion. We put it to use this week, and so thought we’d share the experience!  I loved the buzz that happened AFTER the session was complete– there was so much being talked about and discussed once we all came together to work out a solution together as a team. It felt really empowering. That was the word of the hour. Empowering. So, thanks!

Step One.  Andrew brought up an ISSUE, we voted on it, then asked him some clarifying questions to help us get to the heart of the matter. Here’s the issue we decided to discuss:

How might we create a schedule during the day at StarfireU that allows anyone to sign up for stuff they are interested in, and not keep people tied to their specific year’s calendar of events?  For example, how can we make it easier for Chad, a Junior, to easily be able to sign up for line dancing, a class scheduled on the Sophomore calendar?

Step Two. We all went around and talked about a few THEORIES as to why this is currently an issue….

-It’s easier just sticking to my team and my own work.  It’s easier for me to just think about what I need to schedule for one class, and not have to worry about everyone else.

-I have to hurry to fill up a calendar, because if I have an empty calendar, it will look like I’m not doing my job. I don’t have time to collaborate.

-The realities of fitting into the structure of daytime programming, rides, staff and member ratios, blocks the creativity we need to reinvent the way we are already doing things.

-I don’t know what every single member in StarfireU likes, so I don’t know when to alert certain people about events happening on our calendar.

Step Three. This brought us to the fun part, discussing STRATEGIES  on how we might go about addressing some of the theoretical road blocks getting in our way:

• Start doing class sign ups a week in advance, in the afternoon, outside of the class structure.  Break out of the current sign-up model that keeps people from knowing what’s on other classes’ calendars.

• Ideate what it might look like to have  an open source sign up model.  Start small (prototype). Make it visual for everyone, and somewhere visible in the building.

• Create a design thinking task force that talks about how we might create a calendar that is even more conducive to people’s choice and interest.

• Ask around– Don’t think it’s impossible or that you aren’t allowed. Ask: “Can I just do this?” and open the gates of permission to start inventing.

 Step Four. Choose one or a few strategies and break down what the IDEAS for next steps could be. Strategy chosen: Create a task force around creating an “Open sourced” calendar:

• Find out if it feasible by figuring out staff/member ratios, etc.

• What is the best day to start out? Pick a day.

• Identify what activities are on the calendar already that are open source, and start to think of ways to schedule those so that anyone can sign up for them

• Prototype what a big board for the an open-sourced calendar might look like

In just an hour, this process engaged everyone in the room, and got people motivated on some tangible “next steps” that could literally change the way we do things around here during the day.  And this isn’t a new issue that has come up, it’s been brought up a number of times, each time people are left scratching their heads about how to actually get the ball rolling. At lunch just before this process took place, Brandon and I were literally talking about how to make the calendars more accessible and free-flowing for every member regardless of year.  But we ended the conversation without much resolution, and no clear path on how to take the next steps forward.  Now we have solid steps, and leadership to move it forward.

I can’t wait to see the prototypes that come from this, and report back on what Open Sourced scheduling looks like at StarfireU.  Keep ya posted.

Abby and I go to get manicures.

Well, first I complete these necessary steps…

1. Give a call to her family and make sure her guardian is on board with her using her own spending money on a little frivolous girl time.

2. Secure approval from her support manager a couple weeks in advance, via email.

3. The day before, check the salon prices and send another email to her support manager so she can bring Abby an envelope filled with cash labeled “spending money.”

She’s nearly 30, but this is her first trip to a nail salon, and she worries the whole week that something might go wrong, and we won’t be able to go.

I pick her up a little earlier than usual.

Then we go get our nails done. We’re both excited.

Empty chairs make up rows of vacant spots. Most people are still at work, so we’re lucky we get there and are first in line. We take a seat while the two-person team gets our stations ready. A few lights overhead strain to illuminate the space, with a little extra help from the afternoon sun coming in through the windows. A bedazzled, golden dragon statue sits on the floor beside us, keeping guard while I peruse the magazine-filled side table. Ladies with white teeth and white faces and white-washed air brushed smiles stare back at us from their fashion designer flashbulb thrones. Abby and I are not your typical cover girl duo, our place in the world is a little more ordinary, and we like it that way. But we do like getting fussed over every now and again. 

“Hello! Come on back,” the cheerful nail tech calls to us. She notices Abby, how her eyes aren’t set the way others are, how her walk is a little like a glorified shuffle, how her nails are long, too long, and dry, and her hair is no maintenance, no frills, close-cut. Not a cover girl. She gets a sympathetic sideways look. I anticipate a caring nod next, and sure enough I receive one with a smile. We don’t mind if it’s not an accurate first impression, because in a second we all sit down together. And our nails get dunked into soapy water. And our hands touch. And the moment evolves. A simple human exchange between four women.

ClipClip
Wash
Rinse
Smooth
Massage

Our girl talk floats between the soap opera on the TV and the two women, working their hands over ours. Side by side. Smiling.

We chat about the day, the weather, a devastating story on the news. We enjoy in the ordinary.

“Come again?” Abigail replies kindly to their accents as she makes conversation in her own Jewish drawl. “What did you say?”
I giggle.

I pick superwoman blue, and she picks lady in pink. The colors glide on, one nail at a time. We look down and spread our fingers wide in admiration.

“When can we do this again?” she asks. We smile some more.

“Thank you,” we chime as we exit.

Abby is sure to grab her receipt, and runs back in after I remind her to leave a tip. I write the tip on the receipt. I sign the paper in the envelope labeled “spending money” and Abby puts the receipt in with the change. I get a call and a voice mail and an email the next day, from all the people who want to make sure everything went okay. I get asked if I could write an email sooner next time with the amount of money she’ll need. I make sure to make an addendum to my list of necessary steps. 

It’s not quite as simple for Abby to go to the nail salon. We can’t just check our schedules, plan a date, and meet each other there. It takes a few extra necessary steps, ones that aren’t open to interpretation or much change, to get us both there together.

But the next day Abby heads to her day program and sits in a session that morning all about proper teeth brushing, while I head in to work and check my email, and both of us look down,  spread our fingers wide, and smile in admiration.

I did the math that afternoon in May, in my head of course, no one noticing what I was noticing while we stood around drinking 50 West beer from a MadTree glass surrounded by shiny steel tanks and hoses.  It was something to notice, that’s for sure whether or not anyone saw what I saw.

Michael, Jim, Bobby, Max, Whit, Blake, Jordan, Jeff, Kenny, Lana, Ray, Jack, Carrie, Cameron, myself.

The math: 9 unpaid citizens.  1 person with a disability.  4 family members.  1 paid staff.

We all met up on a Saturday afternoon.  It’s hard in those moments to not celebrate, make a big deal out of it, shake everyone’s hand and tell them how rare, beautiful, extraordinary it is: the ordinary thing of meeting up and brewing some beer with other people who like beer.

I’ve been asked a couple of times via Facebook posts or email what I think about stories that highlight a person with a disability as an inspirational tale.  Stories that are written as awe-inspiring or tear jerkers of teens making last minute three pointers, or special touchdown runs from the team manager with a disability. Or Prom Queens, or bat boys with Down Syndrome.  We’ve all seen them.  They permeate Youtube and our newsfeeds on Facebook, a feel good blip on the screen and then they’re gone.

Stories about people with disabilities often make the reader or viewer feel good but rarely do a lot of good.  They don’t ask the reader or viewer to actually do anything to combat the social isolation we know most people with disabilities experience.  The videos don’t even tell the reader or viewer that social isolation is an issue, that people with disabilities are often lonely, excluded, segregated, not enjoying reciprocal relationships with (unpaid) ordinary citizens.  Instead we’re presented with this: Look how happy he/she is being crowned on Prom court!  It’s no matter that while an honor of prom court is a fleeting occurrence of pride, the crown and title don’t actually affect any positive change in the number of friends or invitations out on a Friday night a person receives.  (At least that’s not the story being reported).

I am not discrediting the storytellers of feel-good disability “news” or insisting that these moments aren’t a source of pride for those being crowned, those being able to shoot the ball, score the touchdown.  Of course they are.  It’s just that there are other stories that are of more substance than the ephemeral warm fuzzies that are being put out there.  Let’s be clear before anyone reading this misinterprets my writing as “Candice thinks people with disabilities shouldn’t be on prom court/basketball teams.”  That’s not the case.

I think the fact that people with disabilities are even included in highschools, on Prom court, or on the team as a manager or player, or given the opportunity play in even the last few seconds of a game are all steps in the right direction.  In high school, Alex ran cross country with us, as part of the Varsity men’s team.  Unable to run the confusing course by himself, a teammate would run along side him in every race.  I recognize how wonderful and important it is to be a part of the team and how good it must feel to see person with a disability just be a teammate, a legitimate peer with someone their age (and not a code word “peer” with someone else with a disability).

Certainly, we’ve come a long way as there are those among us who didn’t even go to a school that had students with disabilities.  We’ve taken some large steps towards inclusion, for sure.  But, people often mistake inclusion for being in the same place at the same time as a person with a disability.

Occupying the same space isn’t the same as including someone into the fabric of everyday life.  Often a favor in these stories is mistaken as inclusion.  A favor is an act of special treatment by definition.  Inclusion isn’t doing special favors, as Shafik Asante writes, “Inclusion is recognizing our universal ‘oneness’ and interdependence. Inclusion is recognizing that we are ‘one’ even though we are not the ‘same’. The act of inclusion means fighting against exclusion and all of the social diseases exclusion gives birth to – i.e. racism, sexism, handicapism, etc. Fighting for inclusion also involves assuring that all support systems are available to those who need such support. Providing and maintaining support systems is a civic responsibility, not a favor.”  (For more on delusions about disability, please read “The Ethics of Inclusion: Three Common Delusions” by John O’Brien, Marsha Forest, Jack Pearpoint, Shafik Asante & Judith Snow.)

But back to the story: how do you write about goodness without crossing the line into the warm fuzzy, ‘aww, that’s so sweet/nice/cute’ realm of storytelling?  It’s very difficult knowing what we know about perception and image. It’s precisely why blog posts here from Kathy, Kathleen, Katie, Sarah, Tim and myself are thought about deeply and repercussions considered before being shared.  (There’s a backlog of posts that never made it, posts never finished, and posts that are no longer relevant in the unpublished draft folder on Cincibility).  We have to ask, does this story contribute to the devalued perception of people with disabilities, or does this story some how show us a different way?

Tim’s blog 51 People is our most read post, most ping-backed post, the most shared.  There’s good reason for it, too.  It shows the reality people with disabilities often face in terms of relationships and connectedness, and it challenges us another way by simply asking, “what will you do about it?”  It tells a very different story than the feel-good Youtube clips we’re used to seeing.

But people want to hear good news, stories that shed some light on people doing good things! you’ll say.  But the “good thing” in this story–and a lot of the stories we tell– isn’t the presence of disability; the good thing in this story is people finding each other because of a shared interest and a person with a disability happens to be included in sharing this interest.  And included not because of a charity, of pity, or a favor.  And really included not just occupying the same space.

The story of the Brew Review, isn’t inspirational necessarily, not in the game winning free throw, Prom Queen type of way.  It’s really at it’s core, a story about a couple of guys who like beer. So on that day in May, we gathered to brew, the 15 of us.  Previous meetings we decided the flavor of the beer.  Michael suggested a wheat-citrusy flavor drawing inspiration from his favorite, Shocktop.  Others agreed, with the Brew Review on June 5th, a crisp fruity wheat beer would do nicely for summer.

I don’t know if breweries brew together frequently, if it’s faux pas to share your secrets, your equipment, and your ingredients but Michael and I managed to convince 50West and MadTree to work together with us and the other committee members with out starting a brewery turf war…

We’d need some star power to pull off such an event, some legitimacy and some experts would go a long way.  Michael, Lana, his mom, Jordan and I had previously attended an ill-fated brewing class at Listermann in September and quickly learned that we were neither chemists, nor magicians.  We could not “home brew” our way to the Brew Review without serious legal issues with the Alcohol and Tobacco Tax and Trade Bureau, let alone some serious flavor issues arising.

Kenny & Jeff of MadTree were introduced to us and they attended the collaboration night where the idea of a beer tasting night was born in October.  Kenny & Jeff were in the midst of launching MadTree by the Spring of 2013, but committed themselves to brewing a custom beer with Michael and the committee.  After our planning night, Michael, Mary Ann, Bryan, and Amy (all committee members and friends through a theater group they all participate in) thought of locations in Anderson where a tented festival event could take place.  They settled on a church parking lot with a pavilion in November, setting a date tentatively for June 2013.  Weeks past, unreturned phone calls with secretaries, and we were left hanging.  Did we have a location, or not?  Hearing of our location woes, Neal, a renowned board member of Starfire, made a call to a new brewery, 50 West Brewing Company.  As an accountant, he’d helped with their numbers and knew one of the owners. A meeting was arranged, Michael, Neal and I met with Bobby in January.

meeting with Bobby at 50West–touring the brewing headquarters

The story is told in a 3 minute clip, by Katie, and of course one small video can’t explain all the details, work, time and conversations that went into it, but it captures the essence of what it means to come together.

Kenny, Michael, Jim, Jordan prepare the grain for brewing

There were lots of hiccups and steps along the way to plan the Brew Review.  One of which was negotiating the logo and design that promoted the event as hip, and something cool that beer lovers would be into.  An original logo design featured Michael’s face prominently, and while from a good place celebrating Michael, it didn’t have the vibe that all committee members wanted.  While it was Michael’s capstone (as part of his participation with Starfire U), it had become everyone’s project.  Featuring Michael’s face on the logo seemed strange to some, and not portraying the event as legitimate to others.

Another meeting was held and Jim invited in his graphic design cousin, Stephen into the conversation.  Stephen asked those gathered that night what they envisioned.  Michael said a growler, Jordan says warm yellow-toned colors, Gabe said a cool font, Ray said “brew review” needed to be prominent, Jim talked about other brewing events he’d been too like BockFest and BeerFest.  We needed to include MadTree and 50 West’s logo.  We also agreed that Michael’s name and the committee should be included somewhere, too.

Stephen took all our ideas and came back with this:

official brew review poster

All committee members were pleased with the results, and the design was accepted, and easily screen printed onto t-shirts:

brew review tshirts from DIY Printing
(Brandon & Michael above)

and glassware:

commemorative glass given to each person who purchased a ticket

Customized growers were available for purchase

The new logo made such a difference in how the Brew Review would be perceived by others.  In one of the first capstones Starfire supported, Brandon invited a former college professor of his to Be Hopeful.  The professor attended, curious to see what Brandon’s work entailed, and at the end, he remarked, surprised, “this was legit.”  Expecting something less than real, something not legit, given that it in part was tangled up with disability.

With capstones, we are sensitive that what we put out there (images, posters, blog posts, Facebook statuses, tweets) to promote events is always seen as legit events, and not as “disability events.”  While Michael’s face as the logo was a nice thought and from a place of caring about him, it actually would have had the opposite effect in what we were aiming to accomplish.  The event not was not about him but merely, and beautifully including him.

On the evening of the event, 177 people attended.  Some of whom were family members and friends of Michael’s:

Some of whom were committee members like Jim & Jordan who invited their networks of friends too:


And others were just people who liked beer:

The beer was drank, people mingled, laughed, ate, and prizes were raffled.  At the end of the night, when all was said and done, and people had taken their glassware, tshirts, and growlers home, the “project” was over.  The story could end there, but it doesn’t.  Projects are a means to grow relationships.  The project itself isn’t the main focus, but the means by which relationships are built, the purpose of our work at Starfire.

A few Saturdays after the event, I received an email from Kenny at MadTree.  The subject line was “Michael.”  It read: “I’ve been thinking a lot about Mike and would like to get him on the schedule for the taproom.  I think he could handle a Saturday afternoon shift.”

Michael & Kenny

In August, Michael will take his place at the taps at MadTree alongside other bartenders.  There, another bartender will likely teach him what he needs to know, but I suspect he’s already got a firm grasp on what he needs to do: make people feel welcome, pour beer, promote local brewing.  He’s got a year of practice under his belt already doing exactly that.  And he’ll be able to continue his love of beer with others who love beer too, one of the qualifications for working at a brewery.

To me, this story is different than the flash in the pan feel good stories we’re used to.  There’s a level of depth, and respect between people here. This wasn’t a favor to Michael or his family.  (After brewing with us over 8 hours and not asking for any money in exchange for time and the 600+lbs of grain and materials, it’s safe to say that Kenny doesn’t owe us any favors.)  The committee members joined because they like beer, liked Michael, or wanted to.  Incidentally, the Brew Review raised $800 to support the theater troupe that Michael and other committee members participate in, further connecting Michael as a valued member.

The math I did in my head is important.  Numbers tells us something for sure, but it’s the stories behind the number: 9 ordinary citizens, 177 people attended, that make the difference.

Michael’s upcoming August looks much different than it did a year ago when the idea of connecting people over beer was so simple, we thought it might just work.  And it did.

To support the local breweries mentioned here check out:
MadTree Brewing Company                                       FiftyWest Brewing Company
5164 Kennedy Avenue                                                  7668 Wooster Pike
Cincinnati, OH 45213                                                   Cincinnati, OH 45227

Dear Starfire,

As you know, this coming Thursday will mark the end of Joe’s time at StarfireU.  I want to thank you and to let you know how much you have done to impact his life.  During Joe’s four years at StarfireU, he has grown tremendously in character, in maturity, in self-confidence, in self-awareness, in self-respect (and pride), in citizenship, and particularly – in community mindedness. The lessons you have taught him (thru example and with gentle guidance) on a continual basis have lead him to understand how to treat others and how to deal with all manners of inter-personal exchanges.  The respect, encouragement, and admiration you have shown him for his gifts and talents have brought him to a new respect and pride in himself.  Your guidance in some very tough situations has helped him to better understand himself, and to learn self-discipline.  At StarfireU he has been fortunate to be able to explore a vast variety of activities, past times, lifestyles, organizations, community places, and experiences.  He has discovered what most peaks his interests and what he is best at doing.  He has experienced various methods of contributing and participating in his community.  He has learned how important it is and how much he enjoys being involved in the community. He has met new friends who enjoy sharing common passions with him.  He has had the opportunity to name what he wants in his life and what he wants to ‘do’ with his life. He has a focus and a framework for his future – along with new friends with whom to share that future. In a quip:  ‘The World is his Oyster’!  He is definitely a more mature, polished man now than he was four years ago.  . . . . . .And yet he is the same man. . . . . .  What StarfireU has done is 1) to help that man discover himself – the good things about himself; 2) to introduce him to people who share his passions; 3) and to teach him how best to capitalize on his gifts, talents, and passions in becoming an integral part of his community!  All this has been a phenomenal experience for Joe and has made a significant contribution to helping Joe achieve the future of his dreams.

~ AND YET ~

The single most important thing you have done to totally transform Joe’s future has been to enlighten his mother.

You have helped me to grow exponentially in respectfulness, in acceptance, in understanding, in courage, in character, and most importantly – in community mindedness.  The lessons you have taught me (thru example and with gentle guidance) about respect for ALL have led me to understand the importance of ME showing respect to Joe. The encouragement, and admiration you have shown Joe for his gifts and talents have helped me discover all the best things about him and helped me focus on what is RIGHTabout him.  His experiences and explorations of various interests thru StarfireU have helped me to see that Joe has many interests that are shared with others.  Joe’s PATH process helped me to recognize Joe’s dreams and that my job is to help him realize HIS dreams – not MY dreams for him.   His experiences and internship with organizations and community places have shown that there are many places where Joe is not only welcomed but is valued for the contributions he makes – real contributions.  I have learned to believe that it is possible for Joe to make and hold friends – real friends. The people he has met thru Starfire have proven to me that there are people who ENJOY spending time with Joe and who WANT to have him in their lives.  I now understand how crucial it is that he has friends to keep his life full, happy, meaningful, and safe. You have taught me how important community is in finding those friends, in feeling a sense of belonging, and in experiencing a sense of fulfillment by making a contribution. Joe’s capstone project (orchestrated and realized by a team of people who not only truly care for Joe but who are just as passionate about Living History as he) proved to me that others will come forward to help support Joe and WILL make an effort to be in his life.  Your example, lessons, seminars, conversations, and connections have helped me learn to look at my son, his life, his future, and our community in a totally new light – one with hope and much promise. And you are there (indefinitely!) with the monthly Gatherings to support me in learning how to support Joe in building a new future for himself – in community – with others – a future that HE is designing.

~

Truthfully, Joe is the same man that walked through Starfire’s doors four years ago.

But his mother . . . . . . She has become a totally different woman.

There are no words to thank you sufficiently – just know that you have made an enormous difference in Joe’s life and we are forever grateful!

With overwhelming gratitude,

Kathy, Tom, and Joe Wenning

Post Script:   When Katie interviewed me for Joe’s capstone video, I said something that struck a chord in me – actually it sorta hit me like a rock!  I said something like: “When Joe came to StarfireU, he was a bundle of problems to fix, a set of behaviors to modify, a person who needed something to do to fill his days.  He is leaving StarfireU as a person who has gifts and talents – a person who has contributions to make and who has found places where his contributions are valued. He has a whole new group of friends who spend time sharing his passions with him. He has found his place in the world.”  While this statement is (on the surface at least) very true, here is the real (hidden) truth (rock-up-side-of-the-head part):

It was not Joe who did the majority of the changing these four years

it was ME and my perception of him!!!

In the process of decluttering and packing up in preparation to sell our house (shameless plug here), I came across books I had on a shelf that had collected dust.  Some were old theology books from when I thought I wanted to be a religion teacher, and some were educational, social change books from when I realized I didn’t want to teach, not in the traditional sense.

One of the books was “Wild Garden: art, education, and the culture of resistance” by dian marino.  It’s a book not at all about gardening plants, but all about planting seeds of learning, tilling and turning, awakening people to new modes of inquiry, and useful resistance against cultural “norms.”  Part storytelling, part visual works of art, she weaves thoughtful action steps (lesson plans for community building, if you will) to get groups of people, and people one-by-one to start thinking about action steps (even small and awkward stumbling steps) that they can take to affect change in their lives, and in their own communities.

While the book was interesting, yet purely theoretical to me in 2007, it suddenly had a very real application to our work here.

Sarah, Leah and I decided to use what was already out there, and start infusing gatherings with stuff that was known to already “work.”  dian’s work came in during an Eastside gathering in May.  Sarah told a story of a difficult Westside gathering in her honest, even tempered tone.  She talked about showing up with energy, with ideas, and facing a crowd of crossed arms.  No one had interviewed a neighbor, no one believed in the power of neighbors, community, getting to know people, and no one wanted anything to do with it.  And yet, people still showed up seemingly against their will.  She recalls that she worked through that evening giving her best and her all, her examples poignant and personal, her questions well-phrased and thoughtful, pausing for feedback.  Still, she told us, she drove home crying.

At her wit’s end, she came back to the office the next day, and decided, we needed to back up, something had to change.  People either didn’t “get it” or maybe didn’t want to?  Or maybe it was too big, too confusing, too out there?  We decided that we needed to reframe what we were asking.  And so we did.

One of the stories shared in “Wild Garden” reminds me of our work with parents and reframing.  It goes:

There was once a general of war who was tired of fighting. He had spent his whole life perfecting his skill in all the arts of war, save archery. Now he was weary and wished to end his career as a fighter. So he decided that he would spend the rest of his days studying archery and he began to search far and wide for a master to study with.

After much journeying he found a monastery where they taught archery – he entered the monastery and asked if he could live there and study. He thought that his life was now over and the remainder of his days would be spent in study and meditation behind these monastery walls. He had been studying for ten years, perfecting his skill as an archer, when, one day, the abbot of the monastery came to him and told the former-general of war that he must leave. The former-general protested saying that his life in the world outside the monastery was over and that all he wished was to spend the rest of his days here. But the abbot insisted, saying that the general must now leave and go into the world and teach what he had learned.

The former-general had to do as he was told. Having nowhere to go when he left the monastery he decided to return to the village of his birth. It was a long journey and as he neared the village he noticed a bulls-eye on a tree with an arrow dead-center. He was surprised by this only to notice more bulls-eyes on trees and, in the center of each, an arrow. Then, on the barns and the buildings of the town he saw dozens, hundreds of bulls-eyes with arrows in the center of each one.

The peace he had attained in tens years of monastic life had left him and he approached the elders of the town, indignant that after ten years of devoted study he should return to his own home and find an archer more skilled than he! He demanded of the elders that the master archer meet him by the edge of town in one hour. Waiting by the mill the general could see no one coming to meet him though he noticed a young girl playing by the river. The girl noticed him and came over.

“Are you waiting for someone?” asked the girl looking up at the former-general.

“Go away,” he said.

“No, no,” said the girl, “you look like you’re waiting for someone and I was told to come and meet someone here.”

The former-general looked unbelievingly at the little girl and said, “I’m waiting for the master archer responsible for the hundreds of perfect shots I see around here.”

“Then it is you I was sent to meet. I made all the shots,” said the girl.

The former-general looked even more skeptical, convinced that this girl was trying to humiliate him. He said to the girl, “If you’re telling the truth then explain to me how you can get a perfect shot every single time you shoot your arrow.”

“That’s easy,” said the girl. “I take my arrow and I draw it back in the bow and point it very, very straight. Then I let it go and wherever it lands I draw a bulls-eye.”

I love the ending of this story.  I love the moral.  We have the ability to draw our own bull’s-eye, our own frame.

The question remains, what is your target?  And your target alone, not anyone else’s.

So for the past two gatherings that’s what we’ve done, allowing people to define their own terms, their own to-do lists, their own action steps, their own pace (with some gentle pushing and creative suggestions from us, of course), allowing people to draw their own bull’s-eye.  If you just can’t interview a neighbor and return with a story, then perhaps you can look up a dog walking club to join in Deer Park?  Perhaps you can finally fill out that YMCA application you picked up last month?  You don’t have to drop it off yet, just fill it out.  Maybe you can help your son learn a new casserole recipe in time for an upcoming potluck.  You can commit to coming back next month with a story about how it went.  You can do those things.

The story of the general of war and the little girl shows us just that: we can define our own frame, we can draw our own target.

Our first gathering after Sarah’s struggle on the Westside, and after our ‘pause and reevaluate meeting of the minds,’ we asked people to draw.  On a piece of paper, using your non-dominant hand (if you’re right handed- use your left, if you’re left handed – use your right) draw a picture of nature, we asked.  Mine looked like this:

Candice’s non-dominant hand drawing

Then we asked people to draw the same nature scene, but with their dominant hand.  Mine looked like this:

Candice’s dominant hand drawing

Then we asked people to talk about how it felt, what it was like.  I wrote down their responses.

“I felt shaky.  It was hard to do it.”  one man said, holding his scrap piece of paper with the drawing on it, the lines wiggly, and in nonlinear fashion.

“It was pretty awkward.  I was thinking maybe others would judge mine,” a woman said, with her drawing face down in her lap, “then I realized, they were asked to do it too.”

“I had to really think about it a lot to do it.” another person chimed in.

“Slow.  I had to slow down.” another woman said.

“It was a little uncomfortable at first.” someone muttered.

Looking above is my side by side comparison.  Sure, the one of the left is a little shaky, a little weaker, messier than the one on the right.  The right drawing is more confident, bolder, a little more clear that it’s a tree, a river stream, and a person smiling on the banks.

But we didn’t ask for a masterpiece, did we?  We didn’t ask for a prize winning piece of art.  Rarely are people wonderfully skilled at doing something they’ve never done before.  My left-handed drawing is a bit unruly, but it’s still able to be interpreted.  You can tell there’s a tree, a river, a person.  It’s not perfect, but it’s a start.  I bet if I practiced that drawing every day with my left hand I’d get pretty good at it.  I bet if you practiced doing small things, small action steps you defined for yourself each day, you’d get pretty good at it, too.

We aren’t asking for a masterpiece.  It will be scratchy and weak and squiggly and illegible at times.  It will be confusing and messy and hard and slow.  It will be worth it.

a reminder of the “untidy” way we experience reality,   wild garden 1997

This is long-haul, day by day, page by page change.  And it has to start with each of us, personally.  We have to be willing to show up and draw own our bull’s-eyes.

We’ll place our arrow in the bow, position it carefully, and be okay with being pulled back and stretched a bit, before we shoot forward.  Or as dian marino would write, we have to “learn to love a crooked line.”

Meaning and Message: Marketing at the Intersection of Arts and Advocacy

Posted on June 17, 2013 by timothyvogt

(This is a guest blog post by Christa Zielke. I’ve had so many great conversations with Christa over the past year about her work in building inclusive communities through art, cycling and enthusiastic conversations. This was originally published at here by aeqai.com, an on-line journal of the visual arts. AEQAI’s Editor, Daniel Brown, was willing to let us reprint it here, but you’d be wasting a golden opportunity if you didn’t head over there after you read this and check out their content. If you are interested in art in Cincinnati, that’s the place to go. This post touches on where we’ve been, where we are and where we need to go. Christa reminds us of the clarity that comes with mission, determination and thoughtfulness. Thank you, Christa, for this contribution to Cincinnati’s ongoing conversation about inclusion of all artists and citizens.)

The conversation about “outsider art/ists” has been constantly changing and evolving for years. These changes are not ones without conflict – from continuing debate on terminology, qualification, to the many issues faced at the intersection of art and disability advocacy. As its relationship to mainstream culture has evolved, so has the way in which agencies such as Visionaries + Voices present themselves, the artists, and the agencies’ missions as a whole. An art genre that once was identified by and relied on the marginalized status of its creators now holds the power to integrate and advocate for the inclusion of those same populations. Agencies like V+V thus take on the role of advocate, social support network, as well as publicist/agent/marketer. Yet conflicts in presenting this work and presenting an agency that houses the creation of this work while juggling these roles can present challenges.

The arts have long served as a means for promoting and inspiring social, cultural and even economic change or impact. In the world of disability advocacy, as attitudes and goals move away from segregation and sentimentality towards inclusion, equality and recognition of assets and talents rather than (perceived) deficiency, the art created by artists with disabilities has played a great role. In the best scenarios, audiences can see the work on the basis of its own merit, seeing talent and creativity, rather than disability and limitations. In this way, the work has the capacity to “level the playing field.”

The activity described by V+V at this time is most often simplified to “artists working with artists” – a departure from the history of organizations working with people with disabilities in the past, where a service-oriented or humanitarian perspective was the leading message. Collaboration among artists (those with disabilities and those without) helped to forge relationships based on common interest and mutual respect. This is where V+V had its roots, when it opened its doors as an official organization on Aug 3 2003 (when V+V was housed at the Essex studios). As the organization grew, revenue streams became of vital importance, in order to sustain the mission. And while the ability to bill services to Medicaid and other government agencies allowed V+V fiscal sustainability, it also complicated the way the artists being supported were represented culturally.

Sustainability came with Medicaid, but following rules associated with the funding brought inevitable changes to the brand. Instantly, the name “disability services” was the identity affiliated with the arts agency, which now delicately navigated the terrain between the two worlds. With the influx of new participants, there was a more dynamic group of people involved. Some were not necessarily there to create art, but there to benefit from the therapeutic benefits offered from a facility that now shared traits with a day-hab center. Yet there were still the artists who wanted to work, create art, sell art, and make a name for themselves in the arts community: artists who did not need therapy, did not need fixing. They wanted to make art in an environment that supported their aspirations. And yet one agency must, in this new scenario, meet the needs of both.

Merging “outsider artist” with disability resulted in creating an unintentional colonization, but a colonization nonetheless. In addressing this, it is important to consider the history of how our society has treated people with disabilities, specifically developmental disability. From complete segregation into state run facilities we moved towards programming into therapy, work houses, sheltered workshops, with a focus on helping them to be better. To fix them, or at the worst moments of our history, to hide them.

But we don’t need to fix them. We need to celebrate and market each as an individual rather than a group identity. Yet there is a tension that constantly takes place – to maintain an environment where the artists can thrive, with access to accommodations or support in a world that has yet to understand how to include, adapt to or accommodate those who are different, requires resources. Hence funding and marketing the agency is necessary. Although every nonprofit hopes to someday achieve its vision and no longer need to exist, the need for agencies like V+V is still great. We still receive offers to participate in shows where well-meaning organizers make offers to show the artists’ work “next to the children’s section.” Visitors and supporters often tell us that they admire what we do, and that they enjoy the artwork. We appreciate the former, but we strive for the latter.

Marketing can be an integral part of this process as we find ways to attach meaning and message, and tell people where the value lies – in the work, in the celebration of our diversity and shared experience. Messaging that’s not just about fundraising, or even about the organization as a whole – marketing that celebrates the artists singularly. For each artist’s assets, his/her work, his/her talents – yet that still must be balanced with the need to fund agencies that support this work.

Therein lies the challenge. Many people still struggle to look beyond disability. Historically, our culture often identifies a person with a disability as disabled first, and then moves on to other components of the person’s identity that may or may not have any connection to their disability – artist, athlete, parent, student…

Through its ten year history, V+V has grown, changed, and shifted messaging to accomplish its goals of not only facilitating the creation and appreciation of art, but the fostering of relationships and advocating for inclusion of the artists who work at the studios in the arts community and hence our community at large. Moving away from branding that highlights “Outsider” terminology, we have strived to promote the artists in a professional, polished way while still embracing the unique, nontraditional environment and celebrating the fun, creative work that takes place within the walls of the studios. Yet we recognize that when the artists are involved in exhibitions outside of the V+V gallery, they are no longer participating in an arts activity within an environment that serves people with disabilities. They are participating in the arts community as artists. The more opportunities for the artists’ work to be seen and interacted with in environments that celebrate their talents outside of the colonization of a “disability services agency”, the more we move toward a truly integrated and inclusive culture.

Christa Zielke served as the Marketing Director for Visionaries + Voices from March 2012 to May of 2013, when she moved into a new role with the Saul Schottenstein B’s Special Needs Connection. She also works as a freelance writer.

In the corner of a coffee shop, a woman sits with her legs crossed in a plush reading chair, holding a composition notebook in her lap. Sitting beside her are two friends, both waiting their turn.

“As someone whose words often get caught in her throat,” she scribbles, “I’m especially moved by this ‘definition’ of community. I also often think of community as a ‘sum greater than it’s parts.’ To me, community means everything, we are nothing without it. 

“Thank you for asking.”

She looks up and closes the notebook so that it makes a “whap!” sound. Her mind re-registers to the room and her surroundings, coming out of her writing daze, she passes the notebook along.

“What did you write?” her other friend chides.

“Nothing!” she remarks in defensively teasing way.

It’s a Sunday afternoon, and the group of friends, who meet at the coffee shop regularly (but usually with no defined purpose in mind), discovered this notebook entitled “Write me, I’m yours” sitting on a side table near the register.

Write Me, I’m Yours journal

Inside a poem is taped to the front cover, but the pages are otherwise blank, left to be filled by whoever happens on them. Beside the poem a prompt asks, “What does community mean to you?”  The poem reads:

“Somewhere, there are people
to whom we can speak with passion
without having the words catch in our throats…”

Michelle Dunford, a Bridgetown native and member of StarfireU is a researcher and prolific writer of fan fiction. As a member of StarfireU, she was given the opportunity to design a collaborative project formed around her interests.

Michelle writing

Together, a committee of fellow writers created this journal project, which “seeks to unite writers through communal journals, located at a variety of locations in Cincinnati, with the hope of inspiring creative responses to all the big questions in the universe (and maybe some small ones, too)…” The project is called, “Write me, I’m Yours.”

“…Somewhere a circle of hands
will open to receive us, 
eyes will light up as we enter, 
voices will celebrate with us
whenever we come into our own power”

Libby Hunter, one of the writers on the project’s committee says that the journals have created their own community, a space for people to come together creatively and celebrate writing.

“The journals are a good outlet for self reflection,” said Libby, founder of the literacy organization WordPlay. “They’re non-digital, tactile, and simple. The process is very kinesthetic.”

“…Community means strength that joins our strength
to do the work that needs to be done
arms to hold us when we falter
A circle of healing
A circle of friends
Someplace where we can be free.”

On Tuesday, June 11th at 7pm, Michelle and her committee will be hosting a readaround for the journals at WordPlay at 4041 Hamilton Avenue in Northside. Contributing writers are invited to attend, along with curious members of the public interested in listening to their community’s journal entries.

“The entries can have a confessional quality about them,” said committee member Chris Mooney, who volunteers along with Michelle at WordPlay. He said at first they weren’t sure if people would be too busy to contribute to the notebooks, but over the course of 5 months Mooney has been pleasantly surprised.

“It’s kind of anonymous, so people are willing to expose themselves,” he said. “A lot of people have been responding to each other’s journal entries. It’s interesting. I think it’s feeding some kind of need.”

On the other side of town, a 9 year old sits with pen and paper in hand, her face not lit from a screen before her but the sun coming in from the window at Rohs Street Cafe. She slows down a pace. The prompt is dreams.

“You stepped on the shower tiles,” she writes. “They lit up yellow and disco music started playing.”

Looking toward the future, Michelle says she is gathering information from contributing writers to form a supportive monthly writing circle.

“The best thing that could happen is more people get involved,” said Dunford, who also works part time at City Council and participates in Women Writing for a Change. “People can write me an email and we can get together. This is for people who want to write, but also for people who want to be supported on how to be a more creative writer.”

To find out more and get involved in Write Me, I’m Yours, go here: https://www.facebook.com/pages/Write-Me-Im-Yours/134018040100175?fref=ts

This past month we had a visitor from Tajikistan at Starfire.  

After joining a few of us on a training in Pennsylvania, she wrote this piece and would like to share her thoughts here on Cincibility.  Thanks Marhabo, we wish you the best.

Marhabo (right center) at the collaboration project: A Renaissance Dinner with Lauren Froh (front center) and guests

As a Fellow of the Empower Access program, it was very exciting to be invited to take part in the four day workshop on Social Role Valorization (SRV), held in Halifax, Pennsylvania…

I have witnessed at Starfire these SRV concepts in action, namely people attaining valued roles, within a couple weeks of my fellowship. As the executive director Tom Vogt said, Starfire is now in a state of transition. It is on the way to rebuild a program that is focused on deepening relationships in the community between people with disabilities and people without disabilities by focusing on gifts and assets of everyone.

I have noticed that there are lots of different service organizations, institutions or establishments providing services for people with disabilities in the United States.  Starfire is unique because it makes a difference in a person’s life by keeping an eye out for supporting the social roles of people with disabilities in the community.

Observing all this, I try to picture the possibility of implementing the same concept with our partner organizations for people with disabilities in Tajikistan. Of course, it must require huge effort, time, resources, experience, knowledge and support. The organizations of people with disabilities and their members should consciously be agents of change in improving lives and making communities aware that people with disabilities should not be isolated, segregated and pitied, but supported in inclusion and integration. Only then could they too make their contribution to the communities, and change the situation for the better.

The SRV workshop left a great impression on me. The most powerful message that was conveyed at the end of workshop struck me to the bones. This message I would like every human being to accept and follow, is called the “Credo for Support” and was written and produced by Norman Kunc and Emma Van der Klift, dedicated to the memory of Tracy Latimer.

A credo for support 

Do not see my disability as the problem.

Recognize that my disability as a deficit.

It is you who see me as deviant and helpless.

Do Not try to fix me because I am not broken.

Support me. I can make my

contribution to the community in my own way.

Do Not see me as your client. I am your fellow citizen.

See me as your neighbor. Remember none of us can be self-sufficient.

Do Not try to modify my behavior.

Be still and listen. What you define as inappropriate may be my attempt to

Communicate with you in the only way I can.

Do Not try to change me, you have no right.

Help me learn what I want to know.

Do Not hide your uncertainty behind “professional” distance.

Be a person who listens and does not take my struggle away from me by trying to make it all  better.

Do Not use theorems on strategies on me.

Be with me. And when we struggle with each other, let give rise to self-reflection.

Do Not try to control me. I have a right to my power as a person.

What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not teach me to be obedient, submissive, and polite.

I need to feel entitled to say “no” if I am to protect myself.

Do Not be charitable towards me. The last thing the world needs is another Jerry Lewis.

Be my ally against those who exploit me for their own gratification.

Do Not try to be my friend. I deserve more than that.

Get to know me. We may become friends.

Do Not help me, even if it does make you feel good.

Ask me if I need your help. Let me show how you can best assist me.

Do Not admire me. A desire to live a full life does not warrant adoration.

Respect me, for respect presumes equality.

Do Not tell, correct, and lead me.

Listen, Support and Follow.

Do Not work on me.

Work with me.

Copyright 1995.