Brooms to B-Ball (not your typical Cinderella story)

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

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

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

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

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

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

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

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#LearnFromLocals — Urban Homesteading

Candice was right. Even up until the moment the seats were filled, plates adorned with Madisonville’s very own BBQ, and presentations began, nothing about this night was perfect. But we managed to start  – something – and that’s what mattered.

Here are the presentations from that night, each a variation on the theme of urban homesteading. Enjoy!

Starting Seeds

Vermi-Aquaponics

Urban Homestead – Oasis!

Okay– So you want more?

Why stop now!?!

Next Learning Lab Topic: BREWERS + FOODIES
Friday, March 20th, 2015 6:30 PM at 5030 Oaklawn Drive, 45227 

Hosted by Douglas VanDerlinen from Eli’s BBQ and foodie Ben Lehman…

Hear about local’s experiences with homebrewing and food business start-ups. There will be 6 short presentations! See some great pictures and ask questions from people who have figured some things out…
Instructors:
ELIAS LEISRING / ELI’S BBQ
BRADY DUNCAN / MADTREE BREWING COMPANY
KAREN ZANGER / VANISHING GRANOLA
KRISTEN ST. CLAIR / CREATING NEIGHBORHOOD FOOD HUBS
COLIN RYAN / BLANK SLATE BREWERY
JON SINCLAIR / HOME BREWING

Ron D’s will be there again with his famous BBQ! (so bring your dollar bills!)

Check out Price Hill and Madisonville Learning Labs on Facebook

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What’s bigger than the love of the game?

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.

starfire cincinnati community projects

Mike, John, Alyson, Shana, and Tim

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Mindfulness

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.

M

M

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Madisonville Learning Lab

Here’s a good story about community that isn’t always told in press releases or glossy photos or ribbon cutting ceremonies.  It’s a story of back and forth email streams, phone calls and meetings, questions about insurance and liability, lists of rules about who’s in charge of the unaccompanied kids that might show up, invoices and fee schedules and permits and questions of who’s going to pay for the gas and electric that night, conflicting calendar dates, a location not being “safe” enough for community to attend there, criticized flyers and font selection and how beautifully frustrating a community can be.

And yet…

This month Madisonville Learning Lab launches on Friday, January 23rd and featured five different guests around the theme of the urban homestead.  Steve Rock an environmentalist and garden builder in Madisonville will be present hosting the event with us along with Stu Zanger who will be teaching about starting seeds, Amy Francis discussing how to raise backyard chicken and ducks, Steve Kapuchinsi leading about aquaponics and how he raises fish and veggies in the garage and the Friemoth Family will talk about how they’ve made their Pleasant Ridge home the homestead next door with plants, water, and energy.

It's Happening!  January 23rd, 2015

It’s Happening! January 23rd, 2015

The event will be imperfect and wonderful.  Originally, in August, Katie and I worked to host a Learning Lab in early Fall at a school building’s theater–well mostly Katie did.  She met with the school administrators, explained the event, encouraged it to be promoted in their school newsletter to parents, and yet… Those details could never be nailed down so we blessed and released, promised to keep them in the loop and scouted our next location.

Our next location, we also couldn’t quite make work.  Having a storied history of opened/now closed, and run by two sweet volunteers doing their best, we met with them in September and couldn’t make it work there either.  The third option was the basement of the library but the Madisonville library basement is not accessible and from a aesthetic feel, it didn’t exactly feel inviting.

Finally, we gave up the desire for a “perfect” community space, and are hosting it at Starfire.  Starfire is located in Madisonville, and we both conveniently work there as well as live in Madisonville.

There is much to be said about the “art of hosting” and how the setting of a table matters as much as the content of a gathering, but sometimes you have to start by just having a table.  We decided that just doing it, hosting the event, getting some momentum and bringing people together was much more important for community building than continuing to push back a launch date in search of a perfect community space and details that would please everyone for which to build community.So won’t you join us for our first event?

URBAN HOMESTEADING
Friday, January 23rd, 2015 6:30 PM at 5030 Oaklawn Drive, 45227.

In addition to the Learning Lab, Katie invited a local restaurateur, Ron D’s, to set up his BBQ to be available for purchase at the event, giving neighbors another opportunity support a local business.

While Learning Lab’s are now rooted in one specific community (Price Hill, Madisonville) it is still open to anyone to attend and to learn for free!

Questions?  Shoot me an email at candice@starfirecouncil.org
or, just show up and enjoy the evening.

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Imagining spring

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.

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Cincibility 2014 Year In Review

The WordPress.com stats prepared a 2014 annual report for Cincibility.  Check out our most read posts and skim to see what you missed out on in 2014.  Looking forward to more posts, more discussions, and more reflections in 2015.

Here’s an excerpt:

This blog was viewed about 17,000 times in 2014.

Click here to see the complete report.

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With Goodness, Anything Goes: Part 2

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

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

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

mentorTV

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

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

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

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

tim quote2

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

quote

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

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With Goodness, Anything Goes: Part 1

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.

listen TV

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.

simply arms TV

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.

tvogt

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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.
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