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

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

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

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

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

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

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

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

Mike, John, Alyson, Shana, and Tim

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peter and Lori are on their own.

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

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

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

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

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

Lori and Peter’s story was no different.

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

S.L.Briarcliff Manor, NY

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

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

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

SCA NH

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

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

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

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

blueberryintomatosoup Houston, TX

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

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

kat Los Angeles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who will we sue when we discover
That our privacy has been protected
By the fact that no one knows us?

Which insurance policy will
Cover the cost of our jobs
Monitoring each other’s performance?

What procedures should we follow
When we hit the dead end
Of unlimited fear and imagined tragedies?

Whose permission should we ask
To do the right thing?

Who makes the rule that requires
Our hearts to recognize freedom?

When do we get our license for love?

Who will second this motion?

A guest post by Patti Schaefer

I had the privilege of being invited to a Good Life Network meeting by Patti to hear the story of how the Schaefers went from being a West Side family, to living in the East Side of Cincinnati. I asked Patti if we could share her story here on Cincibility:

This journey began on the West Side of Cincinnati.

After Chris finished high school he worked at Oak Hills School on the Grounds Crew. Chris’s dad Ron and I began thinking of downsizing our home in Delhi and also wanted to provide Chris with an opportunity to have his own section of our home to practice independent living skills.

We moved into a lando-minium in the Miami Heights/Cleves area of Western Hills.  It was pretty remote and very hilly.  At the time, Chris had a job, lots of contacts and enjoyed many social outlets.

Chris had his own living area in the new house that included a sitting area, an efficiency kitchen, bedroom, bathroom and laundry room. With some help, Chris became very good at maintaining his area and a real “whiz” at doing laundry….! Believe it or not, I think the laundry room was Chris’s favorite part of his living space, except for the TV of course. He would even offer to do his friends laundry if they cared to bring it over.

During this time we discussed what we wanted the future to look like for Chris as far as housing was concerned. There was a group on the West Side that intended to build a community type setting for individuals with special needs. The area where it was being considered to be built was near our home, Chris’s job, and was in a good area of town that offered shopping and possible social outlets. At the time we thought this might just meet Chris’s needs when he was ready.

Not long after our discussion, things began to change. The Oak Hills School District, as many other organizations and companies, began to downsize. Chris left his job and, at about the same time, his contacts and social opportunities began to go away as well.

We knew the living facility that was in the planning phase in Western Hills would probably be built, but we were beginning to feel that it wasn’t going to be finished in time to meet Chris’s needs.

Without all of the above, we began to see Chris become lonely and somewhat isolated. Ron and I started attending anything we could concerning housing for individuals with special needs. We got a lot of good information, but also began realizing that we couldn’t count on government waivers to always be available to help us with housing.

After Chris left his job, he began attending Starfire in Oakley. Their program tries to not only include their participants in the community, but they try and wrap the community around the participants.

Between what we had learned in the Housing Sessions and Starfire we began to rethink our situation.

We asked ourselves….”If Ron and I weren’t around anymore, what would life be like for Chris in our current neighborhood?”

We began talking as a family to see what we would like for Chris as an individual living on his own. Here are a few things Chris, Ron and I came up with.  Not just any housing, but housing that will allow Chris:

* To continue the lifestyle he is accustom to and/or how he chooses
to live.
* To live in an area where he feels safe
* To have an opportunity to have one or more roommates or building-mates
* To live in an area where he can use public transportation or be able
to walk
* To live in an area where necessities are easily accessible, such as
grocery stores, restaurants, department stores & social activities
* To live in an area where he already has friends with opportunities
to make more friends.
* To continue to be able to connect with his community.
* To live in close proximity to maintain family connections.

We realized in order to get all these things……..we’d have to move. And for Chris and my husband, who neither had ever lived outside of Western Hills……

This was quite a huge idea to wrap their around.

We started looking at neighborhoods in October of 2012. We centered on the Oakley/Hyde Park areas as they met most of our criteria and already had a few living situations that Chris could be put on the waiting list. These neighborhoods also have apartments and two family homes.

We looked at homes weekly through March of 2013 without finding anything that would work for us. In April we thought we’d better widen our search area.

One Sunday in early April we were scoping out new neighborhoods to consider and stopped at an open house in Blue Ash. It was the first house we’d seen that felt like home as soon as we walked in. We put in a bid and among the six other bids received that day ours was the one accepted. I might share with you that I’m now a firm believer in HGTV’s strategy that a heartfelt, hand written letter to the owner attached to an offer DOES work!

If you are thinking we were crazy……believe me, so did we. We were in a bit of a fog for several days not sure if it was due to buyer’s remorse or just sheer stupidity. AND, we still had to sell our home in Western Hills.

Once we were able to go through the Blue Ash house again we realized, to our “great” relief, that it had everything we needed for a living situation and more. And, the neighborhood seemed perfect. Flat sidewalks, an easy walk to downtown Blue Ash and several people who lived close by that also attended Starfire with Chris.

It certainly looked like a good place to continue our journey for independent living for Chris. The other great benefits were my mother is only two expressway exits away and now we drive 45 minutes less to visit our daughter and her family in Columbus.

As it turned out, we were able to sell our Western Hills house in about 45 days and moved into our new home on June 10th, 2013. Just twelve days after the birth of our first grandson. It was quite a whirl wind time!

In a little over three months after we moved into our new house we purchased bikes, rode the Loveland Bike Trail and enjoyed pedaling on our now “flat” street. Chris is planning to hook up with a biking group and he’s been included in several events.  In the near future, we are meeting with a family that may serve as a community connector for Chris.
And, we attended a block party and got to meet most of the neighbors on our new street.

In hindsight, Ron and I think he and I had also gotten in a rut in our old neighborhood. There was a certain comfort level there with friends and the fact that we had lived there so long. We weren’t venturing into new situations. We’ll definitely still see our old friends. People from Western Hills are used to driving wherever they go, so a jaunt across the viaduct is no problem.

But, now we are taking our clues from Chris. We are getting out and engaging with the community more so, hopefully, we will also have a successful quality of life as we grow older.

Was all this difficult? Well, I won’t lie. It was a lot of work. It still is a lot of work. But, having the potential for a happy, successful, independent life for Chris made the move more than worthwhile.

And while we by no means think we have all the answers yet, we do feel, for us, we’ve made a good, new beginning and are building momentum.

Chris & Friends on the porch of our new house at a meet-and-greet…over 30 people showed up!

The story Ben told was important.  They made the trip up 75 North to Ikea.  She’d recently moved into her own apartment, and as Ben described it, she had very little “things.”  The apartment was barren, Ben recalled to us, no personality, and it didn’t look like someone had just moved in.

Sure, she had a bed and a few dishes that her staff’s agency likely provided, but other than the bare bone basics, her apartment didn’t have stuff.  Ben mused aloud the difference between materialism and the needing things of one’s own, as if to justify going to Ikea with her.  We all nodded, and I got what he meant.  She didn’t have things, not like most of us do.  She didn’t have the things that make a house a home– no artwork on the wall he said, no pictures of family and friends on side tables, no knickknacks of any sort to decorate the space.  She did not have the kind of things that we tell stories about when people come over to our homes and remark “how interesting!” or “that’s darling!” about our things.  She did not have things to tell interesting stories about in how they were acquired, where they came from, and what they mean.

So they went to Ikea, the place where people can spend hours daydreaming about how to change their drab space into cozy abodes with soft lighting, patterned comforters, throw pillows, and the kind of stuff that makes a house feel a little homier.  Ikea is the place to go when you want to dream about the place you wish you lived in (and do so on the cheap).  Stepping into any perfectly designed showroom, one can walk in and out of the types of moods you’d like your space to reflect.  Edgy and modern?  Shabby chic and all white?  Cozy and homey?  Ikea has it all laid out for you in aisles and aisles of fake living rooms, dining rooms, bedrooms, kitchens, offices and playrooms.

Ikea catalog bedroom

Ben continued that he wasn’t sure if it was okay that they’d spent some of the budget at Ikea, but she really enjoyed picking out things for her apartment, things that would be hers.  Some Ikea artwork for the walls, he said, a clock.  Most of us don’t think buying a $3.99 clock from Ikea to be a great memorable experience, but it was for her.

People hold on to things like gifts, and pictures, and antiques, and other heirlooms from family.  They mean something, a connection to our roots, a tie to family members, a token of our belonging to each other.  She, it was obvious to Ben, didn’t have those kinds of things.  She didn’t have the precious kinds of belongings that tie her a belonging.

What the outside world would see as junk, things we would just as soon pitch in the weekly trash, she sees as hers.  These are the things she can keep, things that have meaning, when not many things in her life do.  An old foam beer koozie is sometimes worn as a bracelet, an inflatable alien toy from a carnival or festival she must have attended once decorates her neck sometimes, a cheap bracelet from a quarter bubble gum machine at a restaurant adorns her wrist, old RingPop rings are still worn as rings–the candy long gone, all treasured items that are hers, and hers alone.  It’s clear that she doesn’t have much and never has, given what she clings to and carries with her.

In winter she’s been known to wear more clothing that necessary, likely because she grew up in a house frequently without heat, or in the type of situation that might bring eviction at any moment.  Better to be ready and have your stuff with you, than to return home and see it sitting on the curb piled in trash bags waiting for collection.

What makes a house a home is more than just stuff.  Looking around my house there’s a story attached to most of the items I have.  The dresser that I use my husband and I found in Clifton.  A couple was moving and didn’t have the space.  As they carried it down the sidewalk, we asked if they were leaving it behind.  They said, yes, unfortunately, they had no space in their new apartment.  It was carved juniper wood with delicate scroll work and ornate brass handles. We took it giddily and it’s held my clothes for over seven years.

Dining Room

The credenza and hutch in the dining room belonged to my father’s grandmother.  My mom used them for awhile until she replaced them with her own mother’s furniture.  The mantle in my baby’s room was the original mantle in my grandmother’s house.  The painting in the living room was done by my brother-in-law when he was a budding young artist in high school.  His parents were giving it away when they sold their house.  He’s now a professional painter and professor of painting at Tulane University.  The billy balls and wheat sitting in the vase were from my wedding bouquet.  Three years later they look the same and remind me of that beautiful day in October.  There are pictures on the fridge and magnets holding up save-the-dates, sports’ schedules, birth announcements and thank you cards.  The cedar trunk upstairs was a Christmas gift from my in-laws, and it holds afghans my grandmother and great-aunt made in the 70s, yellows, orange, and brown weaved together.  On the bookshelf there is a large sample of my favorite books all of which I’ve read and meticulously never dog-eared;  there are framed homemade artworks like the macabre birthday cards I made for my husband’s Halloween birthday, a stained glass window that someone gave me as a present, a picture of my grandmother the year she died and a picture of my sister at her high school graduation.  Two guitars hang on the wall that my husband takes down nightly and strums.

Each item is ours and most have a story of how they came into our home.  I know it’s all just “stuff” but it’s the stuff that’s important to me, and the kind of stuff that makes coming home comfortable and personal.  It’s the kind of stuff Ben recognized she didn’t have.

So she has her first apartment that’s her own (as much as it can be her own when a sister is a roommate and there’s 24/7 staff of rotating people).  Ben knew he couldn’t give her antique mantles connecting her to her family’s past, or photographs of her family and friends from wonderful vacations and parties past, or the possessions we all have that makes our spaces ours, but he could help her find a few items that she picked out herself, her own belongings, to put in a place, where perhaps one day, she’ll feel she belongs.

…It’s an un-conference! Don’t forget to come next week and be part of the 3Day, Starfire’s 3rd annual “un-conference” – where YOU and everyone else set the agenda together. The first night is the kick-off, starting with dinner — followed by us creating the schedule together by filling in one big blank canvas, like this one:

…What the next two days of the conference will look like is unknown! Well, not entirely unknown. We DO know there will be dinner each night, and lots of people from around the city sharing their gifts and passions. The rest depends on you taking the chance to be part of the most unique 3Days you’ll have in Cincinnati all year!

Check out our website for more:

http://www.starfirecincy.org

Oh, and Listen to an archive of our interview on 91.7 WVXU – you’ll hear Tim, Leah and Megan give a complete rundown of the ideas behind the 3Day, a few logistics, and a sneak peak at some of the presenters we know will be there.

Starfire’s free “un”-conference helps connect people and battle isolation 

Listen

By MARK HEYNE

Imagine if Carl Lindner never tried an ice cream cone. That intriguing thought is put forth by Starfire, a local organization working to build better lives for people with disabilities, as it invites people to its third-annual Starfire 3-Day “”un””-conference. The free event starts off August 26 with a blank schedule, which is filled by guests offering classes and presentations on a variety of topics. Joining us to discuss the Starfire 3-Day, how it brings people together and helps fight the social isolation many people feel these days, are Starfire Executive Director Tim Vogt; Marketing and Events Director Leah Addison; and Board Member Megan Selnick

“By the end of the year, though, Jamie had lowered his sights from “marine biologist” to “marine biologist helper.” And by the end of eighth grade, when we met with all his teachers and aides and paraprofessionals to go over the Individualized Education Program that would chart his way through high school (good news: the high school French teacher agreed to have him in French 1 for two years and French 2 for two years!), when he was asked what he might do for a living when he graduated, he said dejectedly, “Groceries, I guess.” I’m not sure what I would have felt that day if I had known that he would have to settle for less than that.”  Full article here

As Starfire has started to dip our toes in some cases, and jump in headfirst in others into what meaningful work works like, this article hits a lot of the barriers when it comes to employment.  A few places in the city that we’ve met with, carved a position, or simply applied has seen the value of hiring a person with a disability, and they are a part of a small change to the story of employment for people with disabilities.

Ruth’s Parkside Cafe recently hired Andrew, a self-taught culinary magician to assist with Saturday morning preparation.  His first shift was a few Saturdays ago, and a few of us shared first day advice: some comical,  “Don’t rave about how great the other restaurant up the street is while you’re there” to practical “Do you have nonslip restaurant shoes?”  “Make sure you introduce yourself to your coworkers when you get there.”

Mike has worked for GBBN for almost two years now, as they continue to invest in him as an employee even when he has days when he’d rather be a college basketball coach, or an actor, or something else entirely than their employee.  It’s quite a change from his nearly eight years at Outback Steakhouse, a job he worked after high school and during some of his time with Starfire, a job that frequently upset him with immature coworkers and their lack of professionalism.  It takes a little help now again from Starfire to check in at GBBN, get him back on track and help him refocus his energies.

Douglas, you’ll recall, applied at Eli’s Barbeque because staff at Starfire recognized him as a foodie given his tasty packed lunches.  He had experience in food service previously and lived a few miles up the hill from Eli’s.  What started as Saturday evening shift bussing tables, has grown into a Tuesday afternoon shift, a budding friendship with a coworker, and the additional role of band hospitality.  “Douglas works on busy nights…Saturday nights which are ridiculously busy.  Customers ask if Douglas is working…”  Douglas has someone check in with him too and helps him navigate any issues that might come up at work.

Josh spent much of his senior year at Starfire with Leah job hunting trying to get back into the restaurant/bakery business.  He now has an internship with Donna’s Gourmet Cookies downtown, and a paid position at Jason’s Deli.  Roles that fit his interest of baking and serving others, as well as his experience of having worked previously in bakeries.

Zak was recently hired on at Dunham Recreation Commission.  Michael is still employed with both 50West and MadTree Breweries.   Each of these people have some time set aside to have someone coach them at work, help them learn new tasks, or work on mastering their job duties.  And it works, for the most part.

It’s evident that there are people and businesses willing and able to see the value of a person with a disability’s contribution, though the barriers to employment are real and often difficult to overcome.

“Whenever we talked about his employment prospects after the age of 21, we reminded Jamie that he did not want to live a life of watching YouTube, wrestling videos and Beatles Anthology DVDs in the basement. He always agreed; the idea of watching YouTube in the basement was preposterous.”

And yet, we know many, many people whose day to day life includes YouTube watching, or DVD watching, or television watching to fill the hours.  I cannot count how many times in someone’s PATH, that someone’s interest, the great positive and possible of what a “good life” might look like, was suggested to be television watching, proof of imagination being stifled when it comes to what a person with a disability could do, could be, might be able to accomplish with a little luck and a lot of hard work.

“But I look sometimes at the things he writes in his ubiquitous legal pads when he is bored or trying to amuse himself — like the page festooned with the names of all 67 Pennsylvania counties, written in alphabetical order — and I think, isn’t there any place in the economy for a bright, gregarious, effervescent, diligent, conscientious and punctual young man with intellectual disabilities, a love of animals and an amazing cataloguing memory and insatiable intellectual curiosity about the world?”

A little luck, and a lot of hard work is a typical experience for anyone job searching.  When it comes to people with disabilities, whose skills may not be as easily explained in a typical resume format, and who can often do some parts of a job description, though not necessarily all parts, this changes the game a bit.  Surely, there are more places in Cincinnati like Eli’s, and Ruth’s, and GBBN and Dunham and MadTree who are willing to work with a person to figure out how they fit, figure out how they can contribute to business, and places that value their contributions over the long term.

It is easy to understand why my husband prefers to walk the streets bearing the names of old trees: Maple, Oak, Beech, Chestnut Street.  The lawns are mowed weekly with a chessboard pattern, each house is updated and beautiful, all in similar style.  It helps that there are lots of trees lining the winding, clean streets, giving a shaded path for two dogs and leading the way for two parents with a three month old in tow.  We can walk for a mile or more and not have anyone on a front porch or in a front yard say hello or raise their eyes to greet ours.

More often than not, I oblige, enjoying a cool, shady walk as much as the next person (and admittedly, fawning over the English tudors we don’t live in).  But, when I get my way, I prefer a different route.

We walked down Bramble to Winona, to Verona, to Castle and found ourselves in front of a house we had looked at last summer.  I have an impractical soft spot for historic houses that are in need of love, and modern utilities.  The sight of stained glass windows, scrolled woodwork and original brass hardware has me immediately overlooking shoddy electrical work and suspicious mold as I swoon over what it would look like to restore the built-in fireplaces and strip paint off original hardwood floors.  The house was built in the late 1800 with scrolled cornices on the porch still intact, and a big windowed covered porch.  At the time, the house was in need of, among a thorough cleaning, new box gutters, an updated kitchen, and an updated bathroom (one that did not include carpeting).

As we walked past I said to my husband, “I want to ask him about the bedroom!”  Unfortunately, the man who had apparently bought the house was on his cell phone, watering the lawn that could have been mine.  We continued walking past, staring at the ladder against the house, box gutters currently being repaired, it seemed.  He hung up the phone just as we were passing his fence line, and I went for it.

“So…” I yelled, wheeling the stroller backwards approaching his yard.  “Did you keep the mural in the bedroom?”  I smiled and he immediately laughed and answered, “Sadly no.  We painted over it, but not before documenting it!”

The mural in the bedroom was a Hells Angels biker adorned in black leather and a red bandana, riding his Harley through a field of orange and yellow flames.  It covered the wall in the master bedroom.

We talked for in the street about the neighborhood, the biker’s lair he had purchased and another neighbor, a bouncy dog and a very hip-dressed six year old girl joined as well.

The following week we walked Bramble, Windward, Marietta, observing a spirited basketball game at Bramble Park and encountering the mom of a former student my husband had coached in volleyball years ago.  “She got into Walnut” the mom reported, beaming over her daughter’s accomplishment.  “The only one in her class to get in.”  We congratulated her and my husband recalled how he never scored well enough in math to get in.  “She said it was easy!” the mom laughed.  “I’m gonna be back in 7th grade myself, trying to find x!”  We all reminisced how little we’d retained of middle school math, wished her luck, and then we made our way through the neighborhood.

A few streets up, Jim stood up on his porch and waved at us.  He had gotten involved in the Brew Review project and coincidentally bought a house next door to my husband’s aunt and uncle.  We waved, smiled, and caught up briefly before making our way back home.

While the route my husband prefers is shadier, and passes by nicer houses with nicer landscaping, I prefer the route littered with people: ones who say hello and stop and chat for a few minutes abut biker gangs and children versus the quiet and immaculate English tudors where we nary see a soul.

“Gone are they, the days of coming by with chicken noodle if you were sick. Now I would rather send you an e-cauldron of broth via Facebook.

I have no humanity left.  … I text before I speak in the morning. And the dawn is interrupted by the illumination of my cellphone. And I know that God is upset with me.

I am dying to live again.” Azure Antoinette  Full video of her spoken word performance here

_____________________________________________________________

As predicted she wakes every 2-3 hours (once or twice she teased with four; her sense of humor dark) though optimistically I say each night before bed to my husband “tonight is the night.  I can feel it.  We’re gonna sleep FOUR hours straight again tonight.”

And we don’t, and we didn’t expect to.  Of course, like we knew would happen at 11:49PM, or 2:10AM, 4:37AM, or God forbid, twenty minutes after we’ve just fallen asleep, we awake to the bird calls of a five week old baby girl.  I check the time on my cell phone, and stumble from bed to crib, phone still in hand.

Her feet kick wildly signaling her anger as the quick chirps she began with have turned to real tears welling in her ears preparing to make the leap down her brand new cheeks.  I scoop up the little one, settle in the rocking chair and calm her down.  She nurses quickly, angrily at first, for my delay in responding, and then settles down.  Seeking not only her fill for a tiny belly but the comfort of her mama’s arms, a familiar scent and face, and the gentle sway of the chair.

M’s feet

Once positioned, I reach for the phone again and begin scrolling through the feeds.  New York Times, Facebook, Instagram, Huffington Post, obsessively check email…anything really, to keep a connection to the outside world during these twilight zone hours I’ve been keeping.

During one late night evening feed, in my usual seeking of connection, and conversation pieces, I read the above passage and paused at the line “I text before I speak in the morning.  And the dawn is interrupted by the illumination of my cellphone.”

As I seek connection through the feeds, the baby in my lap seeks connection too, and is often interrupted by the illumination of a cell phone on her mama’s face.

Since then, I’ve made a conscious effort to scroll less in these moments, and be present more.  For these little eyes are looking for connection, and what’s she’s seeking, real human interaction and connection, won’t be found in a newsfeed.  I won’t find it there either.

Look up from your phones.  Or else, we might miss little things like this:

M looking for me

Recently, I’ve been trying little “faith experiments.”

You can probably guess, then , that I was raised Catholic, so I wrestle with what/how to raise my children spiritually.

Recently, I had been noticing that whenever I went to Mass, my thoughts wandered all over the place.  They floated into the past, into the future, around work, family, what the people in front of me were wearing…Essentially, my mind was on most everything but Jesus, God, or faith.

So I decided that one Sunday morning, I was going to walk to Divine Mercy on Taylor Avenue in Bellevue, and just read the Bible without actually participating in Mass.  My thinking was that I could still be present in the church of my upbringing, and practice mindfulness of spiritual presence without the distractions of the Catholic “rigmarole” of rote kneeling, standing, responding, etc.  (My friend Sonny says that the point of that “rigmarole” is to actually bring mindfulness, and he’s probably right in this, but it wasn’t working for me.)

So one Sunday in June, I set out with my Bible and an article that a friend I respect and admire had emailed me a couple weeks prior.  I read his email briefly, and noted that the article he was recommending had something to with “Spanish Jesuits” and our shared work around inclusion.  It sounded interesting, so I printed it off and took it with me that morning, without having any clue what the article was about.

I got up and headed down Center Street, carrying my Bible and this article.  As I approached Taylor, I heard a man and a woman speaking loudly at each other.  As I crossed the street, I saw a man walking his dog.  He said “OK, 123 Taylor?  Jim?  Got it!”

I couldn’t see the woman at first, but as I crossed the street, saw that she was laying on the sidewalk, obscured by a parked car.  She was saying something like “I’m alright!  Just get my boyfriend, Jim, at 123 Taylor.  He’ll help me.”

The man tried to get her to sit on a nearby public bench, but she waved him off.As he walked toward me, I asked him “Is she alright?”

“Yeah,” he said, “She just tripped on the sidewalk and fell.  I’m going to get her boyfriend to help her up.  He’s at 123 Taylor.”

“That’s right up the street,” I told him.  It was just past the front doors of Divine Mercy.  We walked for a bit together, and he complained about the lack of maintenance of the sidewalks.

As we approached the church, I said “So, do you need any help?”

“No.  I got this.”  He said.

“Cool.  Well, thank you for doing that,” I told him, and peeled off into the front doors of Divine Mercy to commence my “faith experiment.”

I sat down in a back row, to minimize any distraction I might create by not participating in the kneeling, standing and responding.

Within the first few minutes, I noticed two things:

• There is not really any way to go unnoticed if you choose to “not participate” in a Catholic Mass.  I felt sideways glances, and people looking at me, as I tried to read the Bible…and even if that was only in my imagination (quite possibly), the internal judgment, at least, was there.

• Also, I literally couldn’t “not participate” in the kneeling, standing, responding of the Mass.  37 years of conditioning had me physically unable to “not participate.”  It was impossible to concentrate!

I finally quieted my mind enough to read a bit of the Bible, and finished a few chapters before I picked up the attached article that my friend had sent me.  As I read it, I discovered that it revolved around a terrific question:  How might we stand against these big systems that create so much misery for so many people?

The article went on to examine answers to that question, in the framework of the parable of the Good Samaritan.

It described the “man half-dead” laying on the side of the road.  It described how the Levite and the Priest both took “a wide berth” around the man so as to avoid him and “preserve their spiritual purity.”  It was only the Samaritan who took care of the man, going to great lengths to ensure he was cared for, while other supposedly holier men avoided the situation altogether.

So here I was, coming to the profound, humbling and embarrassing insight that I was the Priest/Levite, while a woman –a neighbor– was laying out on the side of the road outside the church where I was sitting comfortably, surrounded by healthy and mostly well-off people.

But what if the man walking his dog had decided not to knock?  What if her boyfriend wasn’t home?  What if she passed out or had a concussion before anyone got there?

I could have sat with her or helped her to the bench.  I could have walked with the man walking his dog to make sure he connected with her boyfriend.  I could have done about 15 different things, but instead, I was sitting here, doing a “faith experiment,” trying to stick it to the Catholic Church!

I got up, and walked outside.  She was no longer on the sidewalk.  So I walked down to the address she had given the man walking his dog. There was a man in the yard, and I asked him if his name was Jim.

“Yeah,” he said.

I’m being honest here:  At first glance, “Jim” made me uncomfortable.  My judgment was in full force.  He was drinking a 40 ounce bottle of beer, a little unusual for 8:00 on a Sunday morning.  He had cutoff jean shorts on and wasn’t wearing a shirt, which showed off a lifetime of tattoos and big scar on his chest….And he had a mullet.

“There was a woman who fell on the sidewalk…” I started.

“Oh yeah!” Jim said, enthusiastically.  “That’s my girlfriend.  She’s OK, she’s right in here!  Come on in!”

“Oh, it’s alright,” I began.  “I just wanted to make sure she was OK…”

“Come on in,” he insisted, and walked me into their living room.

He introduced me to “Linda,” who was sitting on the couch with bloody knees and bloody elbows.  She was smiling and laughing about her misfortune, but insisted that she was OK.  Jim had put neosporin on her cuts and cleaned her up.  We chatted for about 20 minutes, and promised we’d continue to see each other around the neighborhood.

That morning was a gift to me.  I met two wonderful people in Jim and Linda, who my life would not typically overlap.  And I witnessed a man, who was just out walking his dog, take the time to take care of someone lying on the sidewalk.

But the greatest gift I received was more like a smack to the forehead.  I had been asking “where is my church?” and I found part of my answer in passing up my responsibility and opportunity to take care of a woman lying on the sidewalk.  I let the suffering of a neighbor play second fiddle to my desire to be “closer to God” or “spiritually strong.”

Hmmmm….I wonder how many other ways I do this on a daily basis.  I am often so preoccupied with what I think needs to change or get done, that I miss the good that I could be doing in the real, local and present moment.

The title of the article my friend sent me is “Taking stock of reality, Taking Responsibility for Reality, And Taking Charge of Reality” by Jose Laguna.  Click that link for a copy to read.  It’s well worth the time.

The title alone is provocative:   How often am I thinking about what everyone else “oughtta do” and neglect the reality in front of my face?  How many chances have I wasted to take charge of things in a tangible way?

I’ve since shared this story with a few friends, and we laugh over the timing of the article and the moment.  What a blessing.

And something helpful if you read the article:  replace “Global Resistance Movement” with “Local Resistance Movement,” so as not to get too lost in the politics, theory or “elsewhere” trap that accompanies big-picture thinking.

Otherwise, you’ll miss the men and women lying “half-dead” in your own life that are calling to you to take stock, responsibility and charge of reality.

photo courtesy of Starfire Board president, Jim Price

“Tell me, what is it you plan to do with your one wild and precious life?” Mary Oliver

If you missed last night’s gathering of hundreds of people celebrating an inclusive Cincinnati, check the stories featured last night over on YouTube.  If you missed out on getting involved this past year and are curious about how your wild and precious life can add something new, creative, and meaningful to Cincinnati, let’s talk.  Drop us a line or give us a call.

candice@starfirecouncil.org 513.281.2100 or leave a comment below.

Annual Celebration

Tomorrow, join us for our annual celebration.  We are excited to share the stories of the people who are making Cincinnati a better place. By attending this event, you’ll learn all the ways Starfire is making our city more inclusive.
Thanks to the generous support of our sponsors, this event is free to attend, but you must RSVP so we can save you a seat!

I have given up the idea of an ideal.

I no longer envision a moment
when I’ll slap my hands together
in a satisfactory clearing of the imaginary
dust of this “job well done,”
and plop down
in my easy chair,
feet up
drink in hand
and sip
as the world sings together
all the live long day.

Except every evening.

I once heard a sage on a stage say
we draw our strength from
a secret conviction:
“In the end, life wins.”

I don’t know which end he meant–
A day?
A career?
A lifetime?
A world?

But his words settle in my glass,
and mingle with the fearful swill
of other more present whispers,
shushing them into sleepy solace
that the coming day is nigh.

thanks to Mary Pierce Brosmer and Walter Brueggmann for the inspiration

Here’s a story from Starfire’s April newsletter…

Andy is a diehard rock fan. His earliest exposure to the genre came when his sister played the Beatles for him during a tough time in his childhood. Since this year marks the 50th anniversary of the Beatles performing on the Ed Sullivan show, Andy wanted to start a project that would commemorate this anniversary, and help tie him into a group of people who also appreciate the power of rock and roll.

Recently he invited the Beatles Booster Club (or affectionately known as “The BBC”) to join his project committee. The “BBC” has been a Cincinnati fixture since 1996. Linda, the head of the group said she has loved meeting other Beatles fans.

 “By January of 1966, I was totally in love with the Beatles, especially Paul, and from that day forward my life totally changed. And then again it changed…when I met all my Beatles buddies because now I have Beatles playmates,” said Linda about forming the Beatles Booster Club. “The best part is all the friends I’ve made.”

Andy has joined the BBC and will be attending their future events. On top of that, he hosts monthly rock music trivia nights (pictured above) at Everybody’s Records in Pleasant Ridge, where he has been a crew member since 2009. Next weekend, he will also be helping run a Beatles Merchandise and Memorabilia Gala with his committee. There people can sell, trade, or display their collectibles of with other Beatles fans. The event is taking place NEXT SATURDAY April 19th, from 6-9pm at Japp’s downtown.

One of the things we do to track outcomes at Starfire is to document the day in and day out. Just like a lot of places that serve people with disabilities do (and are required to do), we complete these logs as part of our job description. We are paid to do it. I’ve had to consider many aspects of documentation, as my role has been to report on effective outcomes. I’ve tried to design documentation forms that take into consideration staff time, how it aligns with our work, and perhaps most importantly: the value of these logs to the person they are being written about.

Documentation historically tells very little of the actual story, due to these considerations of convenience for staff and the need to just get it done. Typically, the most amount of writing you’ll see in logs is when something goes wrong. That’s when the full story comes into play. But on “good” days it might look as simple as this: “5pm: John sat on couch watching TV. 6pm: John got up to microwave dinner and took medication. 7pm: John sat on couch watching TV. 8pm: John took a bath. 9pm: John prepared for bed. He had a good day!”

I have to say that after months of reading logs like this at a previous job I had as a caregiver, nothing I read made me proud to work at the agency. Things began to feel flat, the exact opposite of why I got into this work to begin with. People’s lives aren’t supposed to be flat, and we work with people! Another unsettling part was how the person being written about never read their own logs, or contributed to the narrative in any way. For some people, staff were even instructed to wait until they were in bed or out of the room to write the logs (as it would upset them to see staff writing about them).

Harkening back to our March newsletter post, I’d like to share some of Starfire’s documentation. This was written as Megan’s journey to a life she imagined (the first story in the newsletter) began to unfold. Michelle, a staff person at Starfire wrote these (MR), and you can see her enthusiasm and support for Megan as she and Brenda (Megan’s “connector” or bridge in the community) work to find a food pantry near her home where she could volunteer, to find work with the elderly, and continue making friends at the Rec Center near her house where she takes Zumba classes.

Megan’s goals for November: Sort out Connector arrangements

• Dec 9 Brenda has decided to be Megan’s connector! – MR

Megan’s December goals: Explore volunteer opportunities with Brenda

• Dec 11 Spoke with Megan’s mom about her opportunity volunteering @ the community rec. center –MR

• Dec 12 Megan showed me around her neighborhood. I saw her house & where the rec center is. She will be able to walk there once the weather warms up! – MR

January goals: Set up time and day for Megan to volunteer at the rec center. Make driving arrangements

• Jan 8 ** New Connection: Judy at the neighborhood food pantry. ** Brenda, Megan, Becky & Matt explored Megan’s neighborhood and came across a small food pantry. The lady there showed much interest in Megan, saying she’d like to “pick her brain” on her experience working at CAIN! Megan is on board for working there every week if it can be worked out with her mother & her service facilitator. I see GREAT things coming her way. –MR

• Jan 14 Megan will be volunteering at the community rec. center every other Tuesday assisting with chair Volleyball. Today was her first day. It went really well! Between the food pantry & the rec center, Megan has the opportunity to make some WONDERFUL connections, right in her own neighborhood. Excited to see everything unravel! – M

• Jan 30 – It’s been arranged for Megan to do a three week trial of volunteer work @ the food pantry. A woman will be picking her up & dropping her off each week. If she enjoys it enough, she will no longer be in program at Starfire that day each week & will take on the volunteer position there! – MR

I love this part: “I see GREAT things coming her way,” and all the little steps taken as they do come her way. She is “getting out” of the day program Starfire has, and finding her place in community beyond her label of disability. Megan dreamt up this life. She told us the narrative, and we supported her in living it out. Things don’t always happen this fast, or go quite as smoothly, but the important piece is still there: we are supporting people in a story that is of value to them. There are lessons along the way, roadblocks, wrong turns. But it is valuable.

I should mention here too that around the same time as all of this was happening, Megan got engaged to her long time boyfriend. We can’t take any credit for that though. Congratulations, Megan!!

Heather recently posted to Starfire’s Facebook wall this wonderful reflection about community after attending a Learning Lab in Price Hill and recognizing a neighbor at a local grocery store.

Learning Labs are monthly meet-ups to learn from local citizens. Always FREE and always open to the public!  They’ve been designed for you to learn something of interest to you, or just to meet your neighbors.  Thanks Heather for sharing your neighbor-run in story with us.  We like hearing good stuff going on in Cincinnati!

“Community! that’s what it’s all about!”

If you’ve attending a Learning Lab in Price Hill, Silverton, Northside or the newly formed Bellevue, what has been your experience?  What do you want to learn in the next couple of months?  Who do you know that would make an excellent teacher in your community?

Interested in starting a Learning Lab in your neighborhood?
Drop a line to Candice@starfirecouncil.org