It’s freezing outside. The wind has picked up the cold air and sent it blasting onto every exposed part of my skin as I make my way across the parking lot from my car into a breakfast spot along a strip of businesses. Diana is waiting inside, eating a cheesy breakfast sandwich and sucking down a pop. I was running late, having mixed up where we were planning to meet and driving across town before realizing I was at the wrong spot. She didn’t mind, she said and offered me a seat.

“People just piled in, it was great,” Diana started. Our plan this morning is to talk about last week’s Connections gathering in Oakley, and so we begin by gasping our breath at the number of people who had showed up that night. Some were expected, others not. Held at the library in one of the back rooms, we were sure that space had never seen so many people. 

I get up to grab a coffee and sandwich.

“Did you walk there that night?” I asked, sitting back down and warming my hands on the paper exterior of my coffee cup.

“I live about a mile away from the library, but it was just too cold and dark to walk,” she said. “So John swung by on his way and got me.”

John is one of Diana’s co-workers. We reminisced about all the stories that came out of the evening, all the gifts we heard that were shared. 

“When I first heard about these gatherings my thought was, ‘I have a boyfriend. I have family and friends. I have a full schedule, why do I need to meet more people?’” Then, speaking in a tone of both affirmation and realization, “I see it now.”

As we spoke, her eyes seemed to open more, filling with new ideas of what her neighborhood was and who was a part of her community.

“Some people who were there I knew, or I had seen before, but I didn’t know they lived around me,” she said. “I sat by Carlos – a person who was born in Guatemala, and I think he lived in Mexico before he moved – to Oakley!” she said, emphasizing “Oakley” as if it were the smallest, most plain-Jane place in the world for Carlos to wind up.

The impression she gave me was that after this Connections gathering in her neighborhood, Oakley is a more interesting place to live for Diana. It’s as if knowing the stories of the people who live nearby, and the gifts they have to offer motivates pride in a person, the kind of pride that gets people involved in maintaining the safety and goodness in another’s life beside our own family, boyfriends, or BFFs. 

“As it turns out, I sat right beside someone I’ve never met before who’s actually writing his thesis on transportation, which is right up my alley,” she said.

Diana is a transportation advocate working for Hamilton County Developmental Disability Services. She has worked to change things like the height of the windows on public transportation to be low enough for people in wheelchairs to see where they are headed, and has campaigned to replace the word “Handicapped Parking” with “Accessible.” 

“Cincinnati’s transportation is moving up slowly. People really need to be part of it,” she said. So who better to sit right next to at the Connections gathering than someone who wants to be a part of the transportation movement in Cincinnati. Last week, the two met up and spoke a time about her advocacy work and his research.

“I think it will widen his audience for his thesis,” she said, noting some concerns she is aware of regarding Access, the public transportation for people with disabilities in addition to her knowledge of the public bus routes. “My friend can drive, and she’ll ask, ‘What time will you be here?’ I have to say, ‘Well, I don’t know.’ Makes you think how easy it is to jump in the car. But for some people who cannot drive, whether it be disability, or they lost their job/insurance…I’ve seen a lot of people ride the bus because of the recent recession. It’s just so easy not to think – I can just go out and do what I want to do.”

I asked her what questions she left the Connections gathering with, what thoughts she was left pondering at the end of the night.

“What do we do with all these stories?” she asked. “It can’t just stop in that one room. Or that one place. I hope people keep coming back, just connecting.”

Notes from a recent Starfire Connections gathering

It helps when you can go somewhere, know a name….Being known=feeling safe. But you don’t go out if you don’t know anyone…

What comes out of the Connections gatherings will be a long, even lifelong effort from people in Cincinnati. It will be years of neighbors, who maybe never even knew they were neighbors, coming together to get to know one another’s gifts, stories, and connect over passions for anything. Trains, bees, bikes, photography, compost, NASCAR, globe trotting, vacuum cleaners, we’ve heard them all. We’ve seen how passion for trains can transform from a hobby you do alone in your basement, to a group of train enthusiasts creating an annual tour of homes who are host to elaborate train sets.

When you connect to others, the world becomes a safer place, and doors open to things that alone are not possible.

My coffee was near the bottom and getting cold, and the draft coming from the window wasn’t helping our cozy conversation last any longer. We stood up to put on our coats, and Diana began layering, first a sweater, then a jacket, scarf, gloves and hat. She lives a block away and walked to meet me. I, on the other hand, put on my too-thin winter coat and looked forward to the heat blasting in my car. 

“You want a ride?” I asked.

“No, I’ve got some errands to run,” she said. So we hugged and departed, she walking down the sidewalk toward the grocery store, and I weaving through the cars in the lot, keys in hand. Both of us silently making the promise to keep showing up to these gatherings, and continue reminding one another about all the gifts our little place in the world has to offer, doing our best to be sure that no one gets left behind.

The next Central Connection gatherings will be tomorrow at the Oakley Library starting at 6p, open to anyone interested in being part of their community. Feel free to come with friends, family, and neighbors.

March Connections gatherings:

Tuesday, March 5    7-8:30p   Cherry Grove UMC, 1428 Eight Mile Rd.

Monday, March 11   6:30-8p   Higher Ground Coffee House, 3721 Harrison Ave

Wednesday, March 20  6:30-8p  Bread Basket & Pastry Co.  3218 W. Galbraith Rd.

Thursday, March 21   6:30-8p  European Cafe, 9450 Montgomery Rd.

Thursday, March 28  6:30-8p Oakley Library, 4033 Gilmore Ave.

Each year, Hamilton County Board of DD Services gives out awards at its annual  banquet.  This year, they are giving out nine awards.  Out of the nine awards, people connected to Starfire won five!  Here are their stories:

Kasey

Kasey McCarthy-   Self-Advocacy Award for her Senior Project of promoting grass-roots community kindness.  After a meeting of the minds of her neighbors, friends, and new people, a collaboration project was created centered around the themes of kindness, appreciation, and reaching out to others.  The goal was to do one kindness project per month that incorporates the people she wants to get to know, organizations she is involved in/wants to be involved in, her neighbors, and educating others on the value of kindness.

Kasey has also been written up on a couple local blog posts for her efforts, including the blog of her new friend, Ashley, A Year of Random Kindness.  You can read about their journey from first meeting, to World Kindness Day, to planning for a young girl’s program, to Christmas giving and other kindnesses the two have done together.

Kasey has also been involved in celebrating another recipient of an award: the Mount Notre Dame Youth Philanthropy Council.  MND’s Youth Philanthropy Council has been honored with the Volunteerism Award for their ongoing support of including our friends and neighbors with disabilities.  Since 2010, Mount Notre Dame Youth Philanthropy Council has been partnering with Starfire to include women with disabilities in the opportunity to participate in the philanthropic process.  MND YPC is a group of 70 students who have been given the opportunity to invest $5000 in the Cincinnati non-profit community.

Mount Notre Dame Youth Philanthropy Council

The first year of partnership during 2011-2012 school year, six women from Starfire U participated in the process.  From researching organizations, to presenting, to deciding which local nonprofit received grant money, and participating in the end of the year awards ceremony, six women from Starfire participated alongside the young women at MND.  For the 2012 – 2013 school year, the conversation of inclusion deepened, and the Executive Board of Mount Notre Dame decided to focus on funding organizations that provide a valued role or volunteer opportunity for a person with a disability that is a member of Starfire.   As the young women decide where to grant their monies, they will hear from 21 different Starfire members who are currently working at 21 different non-profit organizations throughout the city.  Kasey holds a valuable role during the process to help mentor the young women’s decisions, as well as provide encouragement and kindness during their process.

By focusing on nonprofits that already include a person with a disability in a valued role, they are helping to raise the status of people with disabilities in Cincinnati, as well as supporting the work of a nonprofit that values their contributions.

Kathleen Cail, pictured with daughter, Grace at Positive Exposure

Kathleen Cail (mom and new Starfire Board Member) has been honored with the Family Advocate Award for her efforts to promote inclusion and appreciation of beauty in everyone.  Kathleen collaborated with multiple people and organizations to bring Positive Exposure, an exhibit that shows the beauty in people with labels of disability, to Cincinnati in Fall 2011, and continues to help with strategic planning and getting the exhibition and programming into other communities and schools.  She has been a part of the Action Learning Groups that some families are leading, and has supported her daughter, Grace, and son, Ben, as they have launched an inclusive teen group, the Inclusion Seekers.  She has written some powerful blogs about inclusion here on Cincibility about the use of words and their importance, inclusive youth communities, and about chance meetings.

Will Latham (personal caregiver for a Starfire U member) has been honored with the Health Care Professional Award for his excellent work and attitude.  We have all met or seen paid staff that miss the mark, or miss the point completely.  (We’ve known aides that sat outside knitting while they were supposed to be supporting someone, others who play on their cell phone and sit in their car, and still another who sat at another table during lunch even after being invited…)  We know how much it means to see paid staff who really cares about their work.  Will is wonderful, respectful, and is always smiling.  He takes his role as a caregiver very seriously and we are continually impressed with the level of respect he has for those he cares for on a daily basis.

Vonceil

Vonceil Brown is a 4th year member of Starfire U and is being honored with the Speaking Up Award for her Capstone Project helping Cincinnati children and teens find their creative and expressive voice.

Vonceil’s story is one of courage and poetry.  Her confidence on stage when standing in front of a room, along with her lyrical, poetic words have helped changed the perceptions of community members for many years.  This year, Vonceil is taking her spoken word to a much broader scale, and is organizing a city-wide spoken word showcase with Public Allies of Cincinnati, local poet Jori Ann Cotton, and Elementz Hip-Hop.  “Voices of Cincinnati” showcase will tie together Vonceil’s love for kids with spoken word, partnering with 5 local urban high schools including her alma mater, Taft High School.  She will offer poetry and spoken word workshops to help these students express themselves, and empower them to make a difference.  As a poet, Vonceil’s voice is making a difference beyond her disability.

Tim sent out an email sharing these successes today.  Here are his thoughts, which I think speak well of small efforts.

“These are just a few efforts that we can all be proud of.  Vonceil is teaching kids of the next generation that everyone’s voice matters.  The Mt. Notre Dame girls are fully aware of the need for places that welcome people with disabilities.  They’ll carry those lessons with them for the rest of their lives.  The difference Kasey is making is small, but sends a powerful message of “what if we were just a little kinder to each other?”  Kathleen is helping us see the power of families embracing the role of advocates, and Will is highlighting the dignity and value in taking care of someone in a respectful, careful way…these are all people who have made an intentional effort to change the future in a personal way.  I know it’s a hard journey, but just take a moment to think about and appreciate all that we can accomplish together.”

Take a moment to think about and appreciate all that we can accomplish together.Andthese are just the few who are being honored in Hamilton County.  Imagine all the other small, meaningful efforts that are being made each day.

What small efforts have you noticed?  Who is someone you know deserving of being honored for their efforts?

My son, Joe and I have been showing up at Starfire’s new 3C’s gatherings lately. We have had some interesting experiences and I want to share them with you. . . .

I have to say, I have had mostly selfish reasons for attending the Connections Gatherings, really.  Sure I wanted to support Starfire’s mission which I thoroughly believe in!  But I also wanted to try and find new people who are interested in History like my son, Joe.  The thought is that these people who share an interest with him, would be good candidates for potential new friends for Joe.  And Joe went along with me because he enjoys social gatherings; and hey, this is all about him anyway – so I thought that he sure needed to be there.  So that is why we started going and that is what I expected to get – which I did, get.  But it strikes me now,  as I now look back over the last few months, how one-dimensional that thinking was.  For now, I realize the quantity and depth of all that I have learned, experienced, and gained from these gatherings – more than I could have ever imagined.  It was one of those You-don’t-know-what-you-are-missing-until-you-go kinda things.  So, let me tell you what you may be missing out on . . .

As a bit of background information:  The Connection Gatherings are monthly regional (5 regions across Cincinnati) gatherings – hosted by Starfire – which are open to anyone who would like to attend.  They are meant to provide a means to connect up with people in one’s own community.  So the idea is to come to the meeting that is closest to your neighborhood, and hear about the people close to you. Starfire’s four interviewers in each region go out into these communities and meet new people.  They learn about peoples’ interests, passions, talents, gifts, personalities, livelihoods, experiences, and dreams. They bring back the stories of four people each month to the Connections gatherings and share these stories.  Other people who attend these gatherings may share stories about people they know or have recently met as well.  Also, there is an opportunity to express one’s own needs such as: “I am looking for a baby sitter”; “I am looking for a good carpenter”; or, “We are looking for people to help out with Joe’s history project”.  That is the basics of what takes place each month.

I began showing up at the Connections gatherings back last year, early in the start-up of these gatherings when there were only 4 to 10 or so people, the majority of which were Starfire staff and Starfire’s newly acquired interviewers.  From these interviewers and the few family members who were there, I heard confusion, uncertainty, doubt.  There was worry about how other citizens might respond to being interviewed:  worries of rejection – and resistance – and distrust.  There was skepticism and confusion about how these efforts could possibly bring two strangers into being friends.  These voices were heard, acknowledged, and discussed – but, not necessarily answered.  Some answers are not easily found.

And yet . . . the troops persevered.  And each month new stories were told about people (average citizens) who were more than happy to share their stories.  There were several who even said, ”Please call me, I’d love  to be involved in this!”  Vibrant stories of fascinating people started rolling in:  Gardeners,  a Health / organic food fanatic, a Pit Bull rescuer, knitters, wrestling enthusiasts, people who love cooking, traveling, competitive knitting (who knew there even was such a thing!), Writers, outdoors men (and women), antique collectors, artists, people who love yoga and throwing backyard BBQ parties.  All these people!  All in my own neighborhood!  All of these gifts, all of this richness is all around us.  All of this fun stuff in life –  the things we all want to do – the stuff we live for / we can’t wait ‘til the weekend for.  It was becoming easy to start to think that maybe one of these people might want to take a fellow enthusiast along to a ballgame or a yoga session or a history event.  Joe was getting excited too.  At one of the gatherings, he heard about a friend of a friend who is a storyteller.  Now who doesn’t like storytellers. “Maybe he could tell stories at my History capstone!”, Joe blurted out.  We went home hopeful that night.

At a one of the larger Conversation gatherings, I was in a small group discussion.  We were sharing our own stories when one member of the group declared himself a sports fanatic.  The conversation was permanently derailed while the four men in my group launched into a rousing discussion of this sport and that / this player and the other.  One of the young men had a difficult time making himself understood.  That was easily overcome within the context of their topic and others were able to guess or decipher his words as he added his two cents toward who was the best ball player.  And on they went. It was as if I wasn’t even there!  But I really didn’t mind – I thoroughly enjoyed watching the shared enthusiasm and camaraderie as ‘those disabled’ and ‘those not’ simply became ‘those who love sports’!  It was not a stretch at all to imagine these men enjoying a game together at a ball field or at the neighborhood bar.

All along, in each of the meetings, I witnessed other sparks of potential connections as the names of people who shared particular interests were spoken together and intents to ‘hook them up’ were voiced.  People found leads for baby sitters, potential yoga partners, and invitations to view train displays.  Other people learned of quilting clubs, and crafting groups and men’s luncheons.    It became easier to believe that my Joe could find friends thru these Connections Gatherings.

And then . . . it happened! A Connection!!  Joe and I were at one of the more recent Connections Gatherings on our side of town.  As is the custom, those who were there were broken into small groups to share stories.  Joe was in a different group from me, so I am retelling his story as it was replayed to me afterwards.  Evidently one of the ladies (somewhere close in age to me – AKA ‘older’) in his group asked Joe if he was still in school.  Joe replied, “No, How about you?” She laughed and said that she finished school herself some time ago but that she had went on to become a school teacher.  She had recently retired.  When Joe asked her what kind of teacher she had been.  She replied that she was a history teacher.  “A History Teacher!”, Joe’s jaw dropped.  And from there the two of them began to talk about all the history she knew and all the history Joe knew and Joe’s capstone and (I am sure) lots about the Civil War and Pioneer Cemetery and this famous person and that one.  Reportedly, this exchange was very close to the one I witnessed between the Sports fanatics as the two  of them instantly became two ‘history buffs’.  Only Joe’s story has an even better ending:  The retired history teacher gave Joe her phone number and said, “Give me a call, let’s get together”.  Beautiful – right?

So . . .here are some of the treasures that I have REALLY gotten from these Connections Gatherings:

• I have learned to leave options open and to leave room for hope.

• I am reassured to know that, just like me, others struggle with this idea of Connections and yet they push on.  It is OK to feel doubts, uncertainties, and fear.

• I have found good company to keep as I try to practice this work of helping Joe find friends and build relationships.  Company that offers not only moral support but real, tangible help.

• I have a new sense of what community is really about and what the real priorities in life are.  I have learned of the beautiful / intriguing / interesting people and past times all around us.  In that, I have learned how valuable it is to take the time to get to know my neighbors and others in my own community. And I am learning how important it is for Joe to spend time in his own community.

• I have learned the value of tapping into other people’s networks and that with each new person who comes to the table, the number of potential connections grows exponentially. I have come to the realization that this method of connecting to other people helps us reach far beyond our own personal networks of family and friends.

• I have witnessed time and again, that when two people who are passionate about the same thing come together, disability disappears as common ground prevails.  This notion that passions, gifts, and interests are what bring people together and builds friendships seems more and more believable to me.

• And, most importantly to me, I have learned that this really could work for my Joe.

I highly encourage you to show up at the Connections Gatherings nearest you – I am confident that you will be glad you did.   Information on dates and times can be found here on Starfire’s web page.

this is a press release we put out recently about our Connections Gatherings…

What do an MMA fight club, evening sewing group, welder, and early dawn rail yard watcher have in common?  Stories like theirs are being shared at Cincinnati’s new Connections Gatherings throughout the city.  An initiative led by the non-profit Starfire, the Connections Gatherings are open to everyone.

“We’re doing some rebuilding of the old sense of what community is. And what being a neighbor is,” said Lynn Volz, a teacher in Finneytown. “I don’t know why we seem to be so busy.  By taking the time to talk to people face to face I think we’ll find we have so many more similarities than differences we perceived.”

Starfire began the Connections gatherings as a way to help lessen the isolation many people feel today.  People like Volz have been collecting stories from their neighbors and sharing them every month to others who live in the city.

“Traditionally, building community has meant seeking out services.  But this is about seeking out people, and building relationships,” said Sarah Buffie, a Starfire community connector from Northside.

“The more conversations, the more people who go out on their porch and get to know each other, it will open more doors for everyone,” said Volz, a College Hill resident.

Starfire has five regions mapped out across Hamilton County.  Each region holds a monthly Connections Gathering.  On the East side of town, Denny Burger is among the storytellers who is invested in sharing the gifts of his neighborhood.

“It can’t be bad to know more people in your community and to know what their interests are, to be able to reach out to them and have them reach out to you,” said Burger, a recent retiree. “It’s great to have community, we all need it.  It’s like oxygen.”

Burger said after he retired he wanted to get involved with a progressive effort, and thought working as a storyteller at Starfire’s Connections Gatherings was a good fit.

“In reality everyone has gifts and everybody brings something that is meaningful and valuable. So to help people explore and find out what those things are is a very joyful undertaking,” said Burger, Kenwood resident.

The Connections Gatherings are a way to hear stories, and learn new things about people who might be longtime neighbors or friends. Chris Smyth, who lives in Price Hill’s Enright EcoVillage, has invested the past four years to volunteering and working with nonprofits.

“I’ve never heard of an organization investing time and money into people like this. This is not the traditional approach. The harder work is in relationships, it’s harder to stop and chat than to just send an email,” Smyth said, who has a background in music ministry. “You have to really set an intention.”

Smyth said he has set his intention on being more visible in his neighborhood by sitting on his front porch and taking longer walks.

“I put myself out there.  If someone happens to be there to meet – great – if not I am still making room for enough time to have a long chat,” said Smyth, age 26.  “People who come to the Connections Gatherings notice a change, realize it’s worthwhile, and continue coming back.”

You can hear Smyth’s stories, among many others, each month at the Connections Gatherings near you.

Upcoming dates:
1/31/13   Oakley Library (4033 Gilmore Ave.) 6-8PM

2/5/13     Cherry Grove UMC (1428 Eight Mile Rd.) 7:00-8:30PM

2/11/13   Higher Ground Coffee House (3721 Harrison Ave.) 6-8PM

2/20/13   North Central Library (11109 Hamilton Ave.) 6:30-8:00PM

2/21/13   Madeira Municipal Building Community Room (7141 Miami Avenue) 6-8PM
2/28/13    Oakley Library (4033 Gilmore Ave.) 6-8PM

Contact info:  for questions or a full calendar of other regions dates, locations, and times, please contact Candice Jones Peelman at Candice@starfirecouncil.org 513.281.2100 ext. 124. Or go to our google calendar: https://www.google.com/calendar/embed?src=starfire.council%40gmail.com&ctz=America/New_York 

“The beginning of love is to let those we love be perfectly themselves, and not to twist them to fit our own image. Otherwise we love only the reflection of ourselves we find in them.” — Thomas Merton

We’ve received a few comments about 51 People, and Introversion is not Isolation on the blog and via Facebook about how many people without disabilities have a lonely life as well.  It got me to think about the people in my life and loneliness and how it affects all of us at some point, if we’re honest.  (I still think that the level of isolation is much more profound for people with disabilities, a much deeper divide than people without disabilities, but this isn’t a post to refute who is lonelier.)

I recently had the honor of witnessing a beautiful wedding for two of my best friends, Amy and Collin on Saturday and I’m feeling reflective, sentimental.  There are times when life and love is beautiful with love that is bountiful, evident, and publicly proclaimed in front of family and friends like on Saturday, and then there are times in those difficult and quiet moments where loneliness and darkness creep in, and being loved doesn’t seem so evident.

This dives deeper into the personal than the work we often talk about here, but it’s all relative.  I’ve not changed names here because the story is important, and I’ve tried my best to do so in a respectful way.  The only way I could do that in a respectful is in a letter format.

Our board member, Neal, wrote in his blog post, – “I’ve been very lucky in my life to have friends like you that make being alive a great experience.  Sure, I gripe and groan about the problems I experience but I’m human.  The reality is that with good friends and a supportive wife and family, things work out.  Life ends up pretty good.”

I guess this is a post about how people know you, carry your story, and how your presence, or lack of physical presence in this case, continues to make an impact.  How friends make “being alive a great experience.”  And what happens when you’re no longer alive to those who loved you.

Do you ever wonder how you’ll be known?  What will people think in their heads about you after you’ve gone?  What will they write, months later to public blogs like this?  What sense will others make of your life without your permission?
___________________________

Dear Phil,

It’s probably a weird, morbid thing that Katie’s voicemail is still on my phone.  And also weird that when my iphone was restored back to factory settings a few months ago due to a computer glitch, that I was not as worried about the camera phone pictures of the dogs or Jordan or of the house, the lost calendar for work, or the hundreds of lost contacts, but it was more the realization that perhaps the texts from you would be gone, too.

Gone as inexplicably as you.  There one minute and then just not the next.  A funny thing happened, though.  The pictures, and contacts and calendar and even the texts all came back after a day or so, miraculously.  The same cannot be said about you.  You have not returned.

That was your way, wasn’t it?  Taking off to Texas once, winding up in 20-20 another time, as gone and here as often as you’d like.  A phantom at the table one day and then just not the next.  You had the habit of disappearing for a couple of days, or months, years sometimes, and then resurface better than you’d left us, as if perhaps you were just specter caught out of the side of our eyes.

It’s taken me awhile to realize that this isn’t just another time that you’ve taken off.  And Jordan was right to tell me it was unhealthy to cope that way.  But it’s difficult not to when I know the last text you sent me was “I’ll hit you up when I get back in town again.”  I’ve had to stop myself from hoping you’ll be at a tavern somewhere again maybe 3 years down the road, and we’ll catch up like we did before, and perhaps I’ve just been looking in all the wrong places, looking in the wrong town for you.

Katie asked me to speak at your funeral.  And I did.  She also asked for photos and I couldn’t find any of the ones I was looking for, but I did find a book you gave me on my 18th birthday.  The Perks of Being a Wallflower.  They made a movie based on it recently, maybe you saw it before you died?, but I haven’t seen it yet.  I pretty much wrote your eulogy about what you wrote to me inside the book cover.  It was weird then, and is still now, to use past tense when talking about you.  But it went like this:

“Phil’s sense of humor was impeccable, dry, and ironic.  I apologize, but it was often inappropriate but perfectly timed.  Inside the book he wrote in bright green sharpie on the top of the page ‘You’re 18! You can now buy porn!’  In pen he wrote of our friendship—starting off rocky and developing into something he admired and was grateful for.  He wrote about not being good at these emotional and sentimental things, something we both had in common and struggled with, but wrote ‘Jones, these are the days I’ll look back on and smile.  Much peace and love always.’”  I changed my name since you died, but I kept the Jones.  You still owe us our wedding video.

I remember you stayed with me once when we were 17, maybe for a couple days; maybe it was just one night.  I don’t remember now.  Up in the attic bedroom on 31st you slept in Jenny’s bed, and I slept in mine, while Jenny slept on the couch as a child, making room for you, a much older child.  It was good to wake up and know you weren’t gone again.  We never talked about what that was about.  Why home wasn’t where you wanted to be.  Why fleeing to Texas in your red car, getting locked up in juvie, and sleeping in other people’s beds were better than your own.

For so long I’ve carried the story that it wasn’t my place to ask.  That our story was one of nondisclosure.  But not of nondisclosure to each other, but to ourselves.  It was none of my business; laughter, jokes, and ignoring whatever was going on what was exactly we needed from each other.  I guess in hindsight, we were probably wrong about that.

There are a lot of things we could have done differently.  I texted you twice since you died.  Once, about a week or two after, I had too much to drink and got emotional.  That message sent through to your number and I can only wonder who has your phone and read it.  The other, at Christmas to tell you happy birthday.  That one came back as “message undeliverable.”

The old crew went out for drinks after your funeral.  We hadn’t all been together since high school.   We joked about old stuff, I bought pizza, we drank bourbon and then we all went home.  We will never do it again, though.  I know that.  There was a sadness to the passage of time, knowing at one point, we all loved each other and that wasn’t true anymore.

There was more to the eulogy, Phil, and others spoke, too.  The point I tried to get across was that I was happy to have had the honor of loving someone as ridiculous, giving, creative, and beautiful as you, even for a short time.  You were loved.   I remember your mom whispering in mine and Jordan’s ear at the end of your ceremony “he loved you two so much.  So much.”

In a few months we’re coming up on a year.  I don’t know if you were lonely that night or bored.  I don’t know if it was sadness or fear, or isolation.  Maybe none of those things at all.  I don’t know because we never talked about such things.  I said I couldn’t hang out because of the ½ marathon.  I had to run 12 miles at 8 AM and had already slacked off on training.  We’d catch up another time.  I probably would have done that part differently, too.

Your words in that old book have helped.  Much peace and love always.  The Thomas Merton quote helps, too.  That I let you be perfectly yourself, and didn’t try to twist your image, and you did the honor of doing the same for me.  That loving someone just means, letting them be perfectly themselves. Much peace and love always.

Love,
Jones
_______________________________________________

It’s interesting that the five valued experiences don’t include “being loved.”  I’m sure love falls into the category of growing in relationships, but I’ve been in many where love isn’t present.  It could also be included in experiencing respect, but I tend to agree with Kathy Forte that you can respect someone and not love them.  Sharing ordinary places doesn’t seem to fit, and neither does making contributions or making choices.  I think there’s an absence of love even though I guess all of them could be ways to find love, make others love you, or the means by which you could grow in love.  But being loved is much different.  It’s the reason letters like this one get written, months after death, on a random Monday night that has no real significance.

I’m reminded of an obituary I read of a person who died the same night Phil.  It was about a person with a disability.  I know this, because there was a picture of her and because it said “for over 20 years she was a valued employee of Jackson and Kidd DDS Centers.”  I’m not upset by what was written about her.  It was respectful, and I didn’t know this woman and can’t say if there was more to her story or not.  Her life was defined by 20 years at an adult center.  But it doesn’t tell us anything that sets her apart from the hundreds of other adults with disabilities that have worked there too, and their stories likely read the same.

It said she was “beloved” and had many nieces and nephews.  I’d like to hear more of that story, the story of being beloved.  I hope that somewhere, a friend is writing her a letter, remembering her on this random Monday, too.

“Monday Night” overlooking Oaklawn 1/14/13

Being loved is probably the most valued experience.  It is one in which we all want.  We spend our lives looking for connections to others, planning for babies, and weddings, and funerals.  Gathering our people, collecting them like rare coins or trading cards, searching for deep connectedness.  Some people add value to our collection, a rare find!, one of a kind!, priceless!, while other people move on to the next collector, and the next, and the next.

Who are the people in our lives that hold our story?  Amy and Collin will hold and carry each others’, and part of mine, and part of Jordan’s, and parts of all our friends’s story.  What of the woman who died the same night as my friend?  Who holds her story?  Who holds yours?
Certainly for Phil, I carry his.  And being loved, I’ve learned, is the most valued experience.

John O’Brien tweeted out this link over the weekend, and I’ve read it multiple times since then.  (I’d encourage you to read his whole post for some of my references to make sense). The author’s words seem to be taken directly from my own skull:

“Sometimes I feel intense nostalgia for the cultural mythology of my youth, a world in which there was nothing wrong with soda pop, in which the Superbowl was important, in which the world’s greatest democracy was bringing democracy to the world, in which science was going to make life better and better. Life made sense.”

We write personally quite a bit here, and it seems in most all of my posts, I’m reflecting on some bygone memory.  You’ll recall my love letter to the Eastside from the past Spring.  Perhaps it’s because, as the author writes, that in the mythical Then of our lives, “life made sense.”  Perhaps that’s so.

What to make of this sense-making?  Did life really make more sense in Then-time, or did we float on in a bubble of the unknown?  I’d argue that it’s probably the latter, at least in my case.  He continues that we thought if we read the newspapers, went to college and stayed away from Bad Things, we’d be pretty much okay, set for life, even.  But soon, as the wisdom of time catches up with all of us, “that story has eroded at an accelerating rate.”

Let’s remember while the story gets eroded about soda pop and Superbowls, that the passage of hours, days, and years often paints our memory with a golden sepia tone.  Someone asked once, we’re the Good Ol’ Days really that Good?  And for whom?

I’ve stayed away from most Bad Things as much as I could, and it seems Bad Things still happen to good people.  And good people still do Bad Things.  And Good Things turn out to be pretty Bad Things, and Bad Things don’t seem so bad sometimes, too.  It’s pretty confusing, this life, even as the story of our mythology, our own revered nostalgia erodes daily, too.

It’s why, I think, change is so hard.  It’s hard here, too with the changes we’ve started to unfold in 2013, and what will continue in 2014, to 2015.   It’s much harder for some than others, likely because their memory, their collection of nostalgia reaches farther back than mine- to a time when we didn’t know what we did now.  Tim writes, “They are my mistakes and they are precious to me.”  But we’re not interested in making the same mistakes.  Connie Lyle O’Brien said in Toronto in one of her small groups that she was interested in “making new mistakes.”  I appreciated her confidence when she said this.

an old logo

So I guess, that’s where we are: the space between stories.  In between new pictures that are yet to be taken, new narratives of who we are and what we’re about, and folders filled with photos and calendars of events from 19 years of fun, our own cultural nostalgia.

We’ve read, we’ve studied, we’ve failed, we’ve remodeled ourselves, we’ve talked, we’ve asked, we’ve questioned, we’ve fought, we’ve cried, and we’ve learned that soda pop, even Diet soda pop, still isn’t really good for you at all, and in the grand scheme of things; that the Superbowl isn’t that important either, metaphorically speaking.  This is about more than fun and games.  It’s why we’ve started creating towards something else while working to dismantle previous visions of what was thought we should be doing.  It’s the space between that old logo, a shiny new one, a vision of white vans, and group outings, to a real vision of life, community, and citizenship.

An Inclusive Cincinnati

Creation and destruction, we’ve learned here, are not isolated incidents.  They don’t operate separate of each other.  So, we’ve created a space where people can show up, share stories, hear stories, talk, be known, laugh, have fun if they want to, get serious if they want to.  It’s an invitation.

This week you can join us tomorrow, Tuesday, January 8th for a Connection Gathering in Southeast Cincinnati (Anderson) and Wednesday, January 9th for a Conversation, here at Starfire in Madisonville and all through 2013 and beyond.

Join Us

Sarah recently sent an email about not letting “your worries trump your hopes” when it comes to showing up and trying the new.  That’s our invitation, too.  This isn’t about changing the world, (not yet at least), it’s about changing our own minds about the story we thought we had to buy; the story that told us separate was better, segregated was safer, and people can’t, won’t, shouldn’t, couldn’t…

We’re in between stories right now, and the sacred space of in between Now and Then can only be filled through each other, in simple ways, and “in such moments we discover our humanity. We come to each other’s aid, human to human. We take care of each other.  In such times, we learn who we really are.”

This post is less edited, less meticulously thought over than others I’ve written.  I often try to balance honesty with sensitivity to situations, but this seems too important to put off until the perfect words come to mind.

When I was a child, as many children do, I would hide behind adult legs in the grocery store in order to avoid saying hello to Mrs. So-and-So or Mr. What’shisface.  I’d blush, hide my face away, and eventually be allowed to not say hello, to not come from behind the legs, to shake hands and speak.  And because I never had to talk to Mrs. So-and-So, I never did.
I have never been an extrovert to the extent that I welcome the opportunity to give speeches or facilitate meetings.  It’s something I wrestle with, and I’m committed to working on this discomfort this year, a continuation of last year’s frustrations and anxiety with leading the Connection Gatherings, which I hope are on your calendar for January by now!  True- I’ve been known to sing karaoke or make my friends laugh with a ridiculous joke or story.

Karaoke in Savannah

But, it may come to a surprise to some, that I prefer, really, truly, to not be front and center considering I spend a fair amount of my day talking to people I don’t know, calling, emailing, meeting people I’ve never met before over coffee.  The reality is, whether I prefer to sit at home and read, walk alone and take photographs, or on the rare occasion, stand on stage and belt 4Non Blondes’ “What’s Up?” I still have to live in a world of full of people.

Our Public Ally this year, Andrew, remarked that he’s an introvert, too.  He spent his New Year’s Eve at home watching movies instead of going out.  I’m sure this is true of other introverts.  Choosing to stay in and snuggle up.  But I know that Andrew had the choice to go out if he wanted to.  He could have accepted the invitation and gone to a popular bar to a party a co-worker was hosting in Over-The-Rhine.  He could have called up any of his 1,363 Facebook friends (I checked) of which, I’m sure he has the numbers or emails of at least 25 of them, and made plans, if he wanted to.

Contrast this with “Brittany.”  Brittany is a member of Starfire, and the reason why this post is so important.  Brittany, (whose name has been changed) is quiet.  Like Andrew, she’s an introvert, too.  She enjoys spending her time reading, taking pictures, doing art.  All things that give energy to an introverted person.  All in all, she’s a pretty quiet lady.

Unlike Andrew, Brittany has only 37 Facebook friends (I checked).  Of those 37 friends, 21 are paid employees of Starfire, or former paid employees of Starfire that are no longer connected to Brittany.  13 of those people are other people with disabilities.  All of these 13 people are people she spends time with at Starfire between the hours of 9-3, as part of the Starfire U program.  Only 3 of her Facebook friends are unpaid citizens.  Of those 3, only one could be considered a “friend” or someone who has spent time with Brittany in the past doing things they both enjoy.  The other two are acquaintances she met in passing at an event.

We talk about 51 People so much around here that it almost becomes something that lessens its impact over time.  “51 People” almost becomes like a scene in an iconic horror movie.  You know exactly the part when Anthony Perkins, playing Norman Bates, is going to pull back the curtain on Janet Leigh’s character.  The first time, it’s horrific to see.  Over time, it’s not as scary since already know what’s going to happen.  Sure, it makes you uncomfortable, but you already knew it.

When I think of 51 People, as just a diagram, or just research Jack did in the 90s, it’s not as impactful.  When I attach names that I know and faces that I care about, it’s still horrific, just as scary as the first time that curtain was pulled back.  It never stops being shocking to think of Brittany’s life looking so isolating, lonely, and vastly different than Andrew’s, or mine, or yours.

True loneliness and isolation are vastly different than introversion, introspection, and solitude.  Part of my vows to Jordan when we got married were to respect his need for “space and silence on difficult days.”  Space and silence, of course, are healthy to a relationship, to ones equilibrium, necessary for sanity in a very loud world and often loud mind.  Sometimes, I’ve kept that vow, and sometimes, (recently if I’m being honest) I’ve not learned to stop talking, pressing, asking questions when I should be just be quiet.

My promise of space and silence didn’t mean isolation, though.  It meant, a moment of time to stop, no words when one doesn’t feel like talking, the ability to sit together and just not.  It didn’t mean being remote.  It meant coming back a few minutes, hours later, or even the next day and resuming.

This is very different than Brittany’s life.  I have to wonder:

What happens when space is distance from others, being physically separate, and when silence is the marker of a life alone?

Dorothy Day wrote, “We have all known the long loneliness and we have learned that the only solution is love and that love comes with community.”  As a child, at home, I would perform skits, dance in front of our VHS video camera, sing songs, write stories, make other people read them, play teacher with my sister Jenny and my cousin Courtney.  I loved attention, praise, and accolades.  I loved a crowd.  I was in the choir at Church in grade school not because I wanted to do solos, but because my voice was one of many harmonized and I wanted to be a part of the song, part of the community.  Even as an introvert, I didn’t want to be left out.

Being shy and quiet as child didn’t equate to isolation for me.  I felt comfortable with being a performer at home, because it was met with love from my community, my family.  It didn’t stop me from playing sports and being a part of a team.  I like singing karaoke because my friends already know how bad I am, and it’s entertaining to them, my community.  I can present about our work if asked, because I’m not standing up there alone.  I know that when we talked to TSI people in Toronto, that my community, my co-workers and co-thinkers were there with me, too.  No one has ever said that I shouldn’t be invited or included and used “introvert” as a reason I shouldn’t be around people.

We’ve talked about limited beliefs on here before, I think.  Tim’s written, “How we speak about people reflects on what we believe about them.  And what we believe about them reflects on how we treat them.”  If we think Brittany is shy and quiet and would prefer to be alone, then we believe it’s better to leave Brittany alone because she’s shy and quiet.  If we leave her alone, we never invite her out, or introduce her to others, or attend things she would enjoy.  When we don’t make invitations, introductions, attend things she would enjoy, she never meets people.  And because she never meets people it proves what we thought all along: she wants to be alone.  She should be alone.

Being shy and quiet are great things.  There is wisdom in a voice that speaks up rarely, but powerfully.  One of my favorite moments of the past 5 years here, was when Lauren, an also shy and quiet woman who never would speak up for herself, stood up at our commencement event in June 2012 and gave a speech thanking her mom and dad and friends.

I lean more towards the introversion in big social situations.  I much prefer one on one conversations than big speeches and sweeping presentations but for me, it doesn’t necessarily mean being alone or not invited or not included, or not having friends.  Andrew or I can choose to stay at home and watch a movie.  For Brittany, she’s at risk of not being known, and the sitting at home, alone, is not a choice—it is her reality, and one of which where there’s an opportunity to change.

Every year Starfire sends letters to our friends and community to jump start our end of the year fundraising campaign. Our supporters draft personal letters to send out to their networks as well. Below is a letter written by Neal Schear, a board member who has been with Starfire for 8 years. Stripped of jargon, in plain words, Neal speaks to what so many of us in the day to day have difficulty describing…

Dear friends,

I’ve been very lucky in my life to have friends like you that make  being alive a great experience.  Sure, I gripe and groan about the problems I experience but I’m human.  The reality is that with good friends and a supportive wife and family, things work out.  Life ends up pretty good.

I’ve been on the Board of Trustees of Starfire for the past eight years as their Vice President of Finance.  It’s been an inspiring experience because I’ve learned about myself and the importance of the support of people around me.  I’ve come to realize that I’ve taken for granted that I have friends and that my family is healthy.

Starfire works with adults with disabilities young and old, and their families.  Our goal is to help change their lives by improving their social experience.  After all, we all want the same thing… Better friends.

This year we are starting a new project.  The goal is to create connections between people with disabilities and people without disabilities.  Instead of just entertaining people, we want to engage them, to find common interests among our members and the community.  The goal is to help create new friendships (connections).

We will need your help and your money.  So I’m reaching out.  Your past support has truly been appreciated.

I have no idea what the outcome of this project will be.  I just know it’s needed, and needed now.

 Thank you for your friendship (and support),

     Neal E. Schear, CPA

One of my favorite songs is by Arcade Fire, Windowsill:

“I don’t wanna live in my father’s house no more.” 

This is such a provocative suggestion.

What if we simply decide to move out of the “house” our “fathers” built?  We just have to notice that we want something new, then start to build our new “house” in some small, meaningful, intentional and purposeful way.

I don’t want to live in a house where my brother and his partner are shunned by their families or community because of who they are.  I cannot force everyone in America to believe that.  So I make sure to celebrate their marriage and imminent new arrival with them.  And my children were part of their wedding.  We’re building a new house of love and acceptance.

I don’t want to live in a house where I don’t know my neighbors, but I know the names of people who are on reality television.  Bitching about the state of TV won’t do much good.  So I never pass up a chance to hold a conversation, meet someone new or accept an invitation.  I’m helping build a new house of connectedness and tangible relationships.

I don’t want to live in a house where money and wealth drive elections and decisions, creating cynical spaces between people.  Becoming St. Francis or Siddhartha doesn’t sound like a solution (or much fun).  So I follow Wendell Berry’s advice and try to live in a more thoughtful, responsible way.  I’m building a sustainable house that doesn’t need annual 3% increases to survive and therefore, doesn’t have to sell its soul.

And I don’t want to live in a house where we separate each other into winners and losers, forcing people to live ostracized lives of various violence.  But railing against “the system” seems useless to me.  And acquiescing is boring.  So instead, I start by making my own life more inclusive in personal ways.  I use whatever influence I have to support innovation and help people plant the seeds of the future.  I am slowly constructing a new house built on a DIY-open-source and convivial foundation where anyone can join in at any point, and do anything that fits their fancy.

The beauty of this is that it gives me a great deal of power over the daunting circumstances that want to lock me into the present.  These obstacles disintegrate once I take those first doable steps.  And it places the responsibility for change squarely on my own shoulders, where it belongs and feels comfortable.

All of this relates to our work at Starfire.  We’ve gone through some pretty big changes in the last few years, and we’ll be going through more changes over the next few years.  We announced to the public two weeks ago that the outings we’ve offered for the past 20 years are ending in 2014.  You can imagine the emails and voicemails I’m getting.  But we also announced the creation of our new gatherings, which we’ve been piloting for six months and so far, are really something that I think will be more meaningful in people’s lives, and more effective in ushering in more inclusion in the world.  They give us new ways to step boldly into the future.

This is why I’m so jazzed about this Mayan Apocalypse thing.  First of all, it’s great for ridiculous jokes about putting off work, buying $18,000 works of art on credit cards and warning Bridget that she’d better appreciate me a little more in our precious last seconds together.

But more importantly, it’s just going to be great.

I should clarify…I don’t plan on any fiery deaths or cataclysmic judgment from on high.  But I do plan on this world ending…as it is…and that’s a not a bad thing.

You see, I take a more personal view of doomsday.  No one knows the hour.  That’s true.  In fact, the “end of the world” occurs for about 154,000 people around the world every single day.  Their world ended and none of them knew the hour.

So I get excited about how this world will end.  And I get most excited thinking about ways I can actively bring about the end of this world.  And I don’t mean this in a “nuclear bomb” or a “takemycountrybackshoveitdowntheirthroat” kinda way.  I mean in a personal “build the house you wanna live in” way.

While it’s tough on us all to go through this “end of the world” or leave those comfortable houses our fathers and mothers built for us, the call is there.  We must act.

The Mayans were right.  The world will end tomorrow, in millions of unnoticeable and unsung ways, and it will end the next day….and the day after that…and the day after that…And each day it will be built anew by our actions and decisions.  I love the sounds of all that construction.

“If you want to build a ship, don’t drum up people to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea.”
– Antoine de Saint Exupéry

After the fourth or so night of collaboration planning, a Facebook friend posted the Saint Exupéry quote and it leaped out to me.

Capstone projects were dreamed up over coffee and conversation one afternoon while I met with Jo Krippenstapel and asked big questions.  What does the last year of Starfire U hold for people?  What honors people’s gifts, time, years spent learning and growing?  I’ve kept the notes, pinned above my desk from that day in January of 2011.  The notes shaped the basis of what capstones would become the first year and what could be possible for all people.

Blank canvas: do what’s most positive & possible

4th year is a blank canvas, build from 5 Valued Experiences

However, in the beauty of all the capstones that were worked on, completed, celebrated last year (all of which you can view here) the ideas/projects were decided before people were invited in.  One of the notes I took with my meeting with Jo was the snippet below:

people intentionally invited

People intentionally invited.  So this year, Sarah came up with a beautiful format that intentionally invited people to dream, build projects with us before we decided what the projects were.

Over the course of six evenings, each of the 22 seniors invited in neighbors, friends, family, people we had met previously to come together and plan.  What we were planning for was to get connected to our neighborhood with keeping in mind each person’s interests and passions as our theme.  What were capstones, people asked?  What were they for?  We had that answer ready for them.

What is a Capstone?

In Sheila’s room, Brandy, Melissa, her dad, mom, sister, two aunts, an uncle, three nieces, two cousins, Abby (Sheila’s connector supporting the project), Abby’s sister, Katie, and their mom all attended.  The group of people were all invited in because they care about Sheila or cared about kids and crafting and event planning.  Together, the group decided with Sheila that they will spend the year planning for “A Princess Ball” a little girl’s event for little girls who love dressing up, arts & crafts, and the finer things in life.

Princess Ball 2013

In Thomas’s room, his mom, Joseph, Dudley, Charlie, and Marvin all came together to discuss music, sound, recording, and events.  Together, they came up with the idea of Thomas bringing together musicians to collaborate on a new Cincinnati-based CD.  Thomas will also collaborate on the CD playing the piano.  The CD isn’t the only thing they planned.  There will also be a CD release party and other opportunities for the group and others who love music to get together and attend jazz nights at the Blue Wisp and other concerts around town.

Melissa’s night included inviting her 5 brothers and sisters, brother-in-law, sister-in-law, Carla, Stephanie, and Danielle, all college students who were interested in the project, Tim, her connector Erin, and neighbor and friend from Sayler Park, Andrea.  Together, with Melissa, they took her interests of kids, cooking, and Sayler Park, and came up with the idea of collaborating with an already existing neighborhood event, but adding something cool to it.  The Sayler Park 5k has been running (no pun intended) for 17 years.  Melissa and her invitees decided that an after-party would be just the thing to bring together neighbors, friends, and celebrate their town.  The 5k benefits the Cincinnati Recreation Center in Sayler Park, where Melissa volunteers with kids on Tuesdays.

Melissa presents with neighbor, Andrea

Kyle’s night included comic enthusiasts and artists who are coming together to write, draw, and publish a brand new comic called “Soul Ninja” and celebrate with a comic release party in Anderson.  The group needed to be interrupted because the planning process was nonstop.  Those in attendance were so excited about the idea that they couldn’t stop the flow of ideas for drawing, story-lines, and characters. Kyle presented the ideas with Joseph and Justin.

Joseph, Kyle, and Justin present “Soul Ninja”

Ashley’s night included inviting in photographers, her family, staff, and others who were interested in supporting her photography gift.  All together, the group decided, that Ashley would take pictures, attend gallery openings, and have her own exhibit in May of 2013.  So far, Ashley has already exhibited her photos at the Emery Theater, and will be a featured artist selling her work at Starfire’s annual ArtAbility next week.

Ashley’s Original Photography

Kasey’s night included volunteers from Crayons to Computers, where she has been a long-time volunteer, neighbors from her street, and Ashley, a woman she met who blogs about kindness regularly.  Together, the group decided that Kasey volunteering and giving love to people is important.  So far, she and others have shared mugs with kind notes and treats to her neighbors and friends who attended her planning night and are working on building a core group of people who love to do random acts of kindness and celebrate the gifts of others.

All told, this year’s capstones will be a bit different than last year.  Instead of “assigning tasks and work” as the quote says, we instead invited people to dream with us first, to long for the endless “immensity of the sea.”  To bring energy and ideas and then work together to narrow down a theme and project that could be done with people.

We aren’t building a ship, but we are building community.  Inviting people in to learn about why sharing places, building relationships, experiencing respect, making contributions, and making choices are so important is the long work.  The collaborative process is much different than delegating tasks.  We are inviting people to come along with us and contribute their gifts too, build community, because they also care about comics/photography/children/neighbors/music.
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if you’re interested in getting involved in any of the projects written here or curious about the others that aren’t – please contact candice@starfirecouncil.org

Yesterday around 3:30 I was in the front of Starfire’s building and I ran into a woman,” Karen”, who was looking for help navigating the bus schedule. I tried to help her identify which bus to take and she went about her day. I left around 5:45 ready to head for home and as I passed the bus stop near our building I saw Karen standing there, confused. Had she been waiting for over two hours?? I immediately turned around and asked her if she needed a ride. She got in my car and I drove her to the nail salon about 3 miles down the road….

What does it mean to be known?

I’ve been looped into dialogues about this kind of question several times over the years but more so in an esoteric sense. Now I ask it to myself in an effort to find a way to communicate to others about the why around our work through Starfire.

I get equally impassioned and frustrated in the conversation about why we do what we do.
We connect people based on their passions and interests rather than their deficiencies or disabilities.

We know in the deepest sense of ourselves that knowing people, labeling people, based on what inherently sucks about them does not create community- no one introduces me as “oh you gotta meet my friend Sarah! She’s sabotaged every romantic relationship she’s been in based on her inability to overcome her destructive patterns!” ….That would be insane!! Who would want to get to know me deeper?? However, our society does this, everyday, with people who have the label of disability. “My brother has Down Syndrome- you should meet him because you work with people like him!” First of all, I work with people who like gardening, basketball, cooking, Indian Culture and Bollywood films, writing, researching, meeting new people, working with their hands, and on and on the list goes. Second, yes, I’d love to “meet your brother.” I’d love to meet him and find out what he loves and what he cares about and then I’m going to work my ass off to find the other people and places who love and care about the same things. It is at this intersection that a seed of connection can be planted. A seed that if watered by friends, family members and paid staff, can blossom into a friendship- a natural friendship based on a shared interest.

But, back to Karen. This little story tells me a few things: 1. If I don’t know Karen exists, then I drive past that bus stop and see her as any ole person waiting for the bus and I go on my way. She’s “independent” and she figures it out on her own. 2. If I only know Karen by what she needs or what she can’t do then I’m in a great position to “help” her out. But then the connection stops there. I drop her off at the nail salon and I head home.

Now imagine. Imagine if I know Karen exists, I know where she lives, and I know one or two things about her that she loves/is passionate about/is interested in. If I know her, I now know how to invite her in. Into community life that has actively excluded her for her entire life. Sometimes unintentionally, sometimes systematically- either way, not being given the opportunity to be known by anyone other than your disability and what services you attend is an injustice.

Let’s step outside of disability though. Imagine I know you, the reader. I know you exist, I know where you live, and I know one or two things you love/are passionate about/are interested in. Now I know how to connect you to a world in which you are already a part. I can invite you to a potluck, introduce you to my friends who started Cinciknitti, connect you with a friend who is doing a sweet neighborhood research project that you might want to get involved in!

For some reason this second anecdote seems familiar doesn’t it? It seems natural and normal and what one may simply call the beauty of networking! But the first anecdote- imagining knowing Karen is unnatural, weird, outside of the realm of possibility.

Or is it?

At Starfire we are constantly doing unnatural things to support people in having natural lives. Take a chance with us. Trust us. And next time you find yourself questioning why we’re focusing on making connections and building relationships, try asking my favorite question: Why not!?!?

“Starfire tells you: ‘You can do this.’ There’s a big difference between cannot do and can.”

Katie at Eden Park

One of the privileges I have as a researcher storyteller is listening to others tell their story. The only thing to do is listen.  If the story is authentic, if it comes from the heart, it bubbles out like a spring and happily offers itself.

Starfire’s story plays out in different ways, and there are various sides of the story to be told.  But the humble truth is that when people speak about their story of Starfire, it is with a common, binding sincerity, albeit heated, elated or some combination of both.

Perhaps it’s because we’re talking about people’s lives.  That’s about as sincere as it gets. Maybe too because we’re talking about something that a lot of people don’t talk about: inclusion, in the real sense of the word.  It’s not a facade, used to lure funders and supporters.  It’s a constant and sincere effort, felt by many people for the first time.

One of my most recent conversations was with mother and sculptor, Leslie Daly, whose art will be featured at our annual fundraiser ArtAbility (coming up in next week, December 7th!)  She spoke to the experience her daughter, Katie, has had this year as a first year Starfire U member, and what she has always hoped for her daughter. What she said was beautiful.

First, a few things about Katie.  She loves music and acting.  This year she is trying a lot of other pursuits in the Arts, including glass making and sewing.  Said of her seamstress skills by Jessica, who teaches sewing at Starfire U:

“Katie’s so stylish.  She is a bit of a Victorian, I love her. She has a lot of courage in sewing.  She’s conquering a big mountain with the project she is working on now.”

Katie added….

“I came here (Starfire) during the summer.  My brother is in university, and I wanted to do the same, so that I can be an independent woman.  I just want to learn how to get a job in something I love to do, like music and acting… It’s my dream to prove myself to my parents… I love Starfire, I pick my goals, make friends.  It’s really fun here. Everyone loves when they come here, so it makes me want to be here too… I want to become a woman, take responsibility and care of myself, focus on my goals, get married, have kids.  It’s important to focus on goals, when you’re done you might have a job doing your hobbies.”

And her mother told me:

“This is what we have wanted for Katie from the very beginning.  We have tried to make it so that she was given the same things her brothers and sister were, as far as discipline and praise go. We want her to have that as an adult as well, so she can live independently, have a job, be social, be part of her community….It’s important to work with young people and have them become part of bigger community in which they’re going to live.  It’s that full inclusion and immersion into community and society that makes for happier individuals… I think it’s really important that she’s going to that world outside of herself, we all need to be looking at what else is out there, connecting with people outside of our comfort zone…  In the education system, there were so many years where people tell you all the things you cannot do. But Starfire tells you: ‘You can do this.’ There’s a big difference between cannot do and can.”

Have you heard a story told with conviction lately?  What was it?  Who told you?

In case you missed it, Friday was the National Day of Listening.  StoryCorps  put together a Listening Wall, and Starfire contributed our two cents worth.

Here are three stories to start your week!

• Sarah Madden interviews her mother, Lora Madden.

• Candice Jones Peelman interviews history buff Joe Wenning.

• Starfire members interview writer Eva Lewandowski.

You can find these and other stories here:

cowbird

This afternoon, my 16-year-old son Ben, left the house with his younger sister Grace to go see Mariemont High School’s production of “The Odd Couple, ” starring their friend Ellyse Winget.  When they left the house, leaving me with a few hours of time to spend with my mom, who is visiting, I felt this huge sense of relief.  It was the relief that we all feel, when responsibility is lifted from us, and it was the sense of relief that we feel when our children are doing things they want to do, with the people they like.

I could have gotten some respite by dropping Grace off somewhere, I suppose, at an event or an outing, with other similarly abled people.  However, I wouldn’t have that same sense of relief, because I know that Grace would not necessarily be doing what she wants and with whom she wants.  Furthermore, she wouldn’t really be growing and I’m not sure that she would really be developing meaningful relationships that way. Knowing Grace, she would develop a relationship with the volunteers, who would really just be temporary volunteers.

Today would not have happened, without a group of people who work across various agencies in Hamilton County, who spent time getting together to talk about what they have done well and what they want to do better in the future.  Within that meeting, these leaders each wrote down one area they want to work on, and then where there was like-mindedness, they came together and started brainstorming.  In this case, the area of interest is “youth inclusion.”  Being wise leaders of their own organizations, they recognized that they are not the youth and that this needed to be youth driven.  So they tapped a few young people they knew and got them together and got them meeting and talking.  Like all good and important movements, it is starting small and slow, but each meeting has more meaningful discussion and brings one or two new faces.  The results are already beginning—Grace is at Elysse’s play, with her brother today. 

If you are an interested youth, or know an interested youth, the next meeting is Saturday, 12/15, at 11:30 a.m., at Awakenings, in Hyde Park Square

I have been thinking a lot about Joe’s social life.  At his age (25) he should have more friends.  Friends that call him up and say:  ”What ya doing?  You want to come over and hang out?”  Or friends who call and say: “Hey, a bunch of us are going to Oktoberfest. You want to come?”  Trouble is, he doesn’t get invitations like this.  Joe does have a couple of really good friends who he spends time with now and then.  But he needs more.  Maybe new friends just don’t think about asking him.  Maybe they think it would be too much trouble to come get him / bring him home – or ask me to drop him off and pick him up.  Maybe they think, for some reason, it is ‘not appropriate’ and Joe doesn’t need other people in his life – “Joe’s family takes good care of him, he doesn’t need me.”  Or maybe it is awkward to arrange things with me, Joe’s Mom – since Joe needs help scheduling things.  Perhaps they just don’t know how much Joe would really enjoy spending time with regular friends doing ordinary things.  So, taking a page from Tim’s book, I decided that it is us (Joe and I) who need to do the inviting.  And little by little, I have begun helping Joe make invitations – mostly thru Facebook.  We have been pretty successful.  It is a little disappointing when someone is busy and can’t accept the invitation.  But that is the way of life and Joe seems OK with that.  Sometimes, Joe’s invitation goes ignored or is refused with no explanation at all – that is pretty tough.  I make excuses for the person and tell Joe, ‘Maybe next time”.  But I don’t have to tell him he is being disregarded – he knows.  It hurts.  It makes me want to pull back and stop inviting.  I know, pretty thin skinned.  But that’s not all . . .

Joe has participated in StarfireU for three years now; he is currently in his fourth and final year of this awesome journey.  Key to the efforts at Starfire is the development of a solid network of friends for each of Starfire’s members.  Understandably, Starfire has been working really hard to bring families into the social network building work they do.  So they ask us families to help identify the people who already know and care about our sons/daughters.  They have asked me to name these people in Joe’s life and then to reach out to those people and invite them to come into and be a part of Joe’s social network.  Starfire asked me to invite these important people to come to Joe’s PATH (a futures planning process)and to his CAPSTONE Collaboration (a network building project) meeting.  They want me to ask these people to become more involved in Joe’s life.  It is really important that I contact these people and ASK them to come help Joe.  However, this isn’t easy for me – in fact, it is extremely difficult.  They are good people, really they are.  They truly care about Joe, I know this.  But it is SO VERY HARD to call or even email and ASK them for help.  So I stall, I procrastinate, I make excuses.

I am totally excited about the work that Starfire is doing.  And I am absolutely thrilled about the wonderful social network of true, lasting friends that is possible for Joe thru this work.  This is life changing stuff!  I am totally convinced that the more people Joe has in his life, the richer, more vibrant, and safe his life will be – especially when I am no longer here to support him.

So why can’t I do my part?  Why is it that I am so afraid to ASK?!!

I have really struggled with that question:  I am a shy person.  That’s true.  I was raised to be self-sufficient, and meeting my child’s needs is my job.  To ask someone else to carry my burden isn’t right.  That’s true too.  To ask for help is a sign of weakness or incompetence. It’s like saying, “I can’t handle ‘things’ on my own.”  Well, maybe there’s a little of that. And then, I come to a thought that hits a nerve:   I am afraid of being rejected.  There is a spark of pain and lingering sadness that comes with this thought.  This is real and powerful and not quite rational.  Why does this fear seem so out of balance?  And, as I continue to search in my mind . . . when I am brutally honest with myself . . . I know that I hear it . . . from some place in the dark, dark, depths of my consciousness, comes that debilitating whisper: “Your son is not worthy.  Why would anyone want to be friends with him?  No one has the time or energy to spend on him! Why would they want to?  How can you possibly think that anyone could really develop a true relationship with someone who has so few skills in holding up his end of developing and nurturing a friendship?”  My heart sinks as I realize that THIS is what is holding me back.

Let’s be clear here:  I don’t really believe any of that!  But I cannot deny that I hear that whisper. Where does that demoralizing voice of doubt come from?!!  How does my fear of rejection rise to the level that it becomes paralyzing?!

In reflecting on this and looking back over my experiences since Joe was born, I remember several times when I have sought help on his behalf – and met with rejection. I have heard words (spoken and unspoken) from others that have fed and kept that cruel whisper alive.

I would like to share these stories with you; not to gain sympathy, nor to prove how tough our life has been. Please believe me when I tell you that Joe has had a wonderful life!  And I would measure my life no tougher than the average – actually easier than many.  What I do want to gain is your understanding of the path we have traveled and how the experiences I have had along this path have influenced me.  The words and actions of others do impact our lives – there is no getting around that.  My life experiences have led me to be who I am today, and explain (at least to me) my challenges in facing ‘The ASK’.  Here are my stories:

It goes way back to when Joe was just a baby . . .  When Joe was born, we felt so fortunate to find a young mother who was interested in babysitting Joe during the day.  At the time, I held a full time, career-oriented job at GE and was ecstatic to have such a perfect daycare solution.  Joe’s babysitter started caring for him when he was two months old.  We did not know that Joe had a disability until he was formally diagnosed at the age of 11 months.  For some time, Joe’s delays were not readily apparent to the average person.  But by the time Joe had reached 18 months, his delays were very obvious.  He was unable to walk or crawl or stand.  He could sit, but he sat with a lean and was not stable.  He was not talking at all.  Joe’s sitter was accustomed to taking Joe along with her and her own two children to the store or to the pool or the park – wherever they went during the day. Apparently as Joe grew older and his disability became noticeable, people – her friends in particular – had started asking questions about Joe and his delays. The sitter became uncomfortable having Joe with her.  So, one afternoon, she told me that she could no longer babysit Joe.  I was shocked and totally distraught. I began my search for another day care provider.  We asked everyone we knew and could not find another private sitter.  So I turned to regular daycare providers.  One by one I approached each daycare in our area.  One by one they turned me down.  Joe was ‘too fragile’.  He would get ‘stepped on’.  “We don’t have a place to put him where he will be safe.”  “We can’t possibly provide the special care that he needs.”  Many times the excuses didn’t even make sense – the answer was basically, ‘No’ because he had a disability.  With every rejection, my heartache intensified.  No one wanted my baby – my beautiful, sweet, happy baby.  He didn’t fit.  He didn’t belong. He wasn’t normal. He wasn’t good enough. My heart was breaking!

My next story takes place when Joe was about eleven. Joe had participated in Cub Scouts from the very first day when he came home from school dancing around and waving a flyer about signing up. He joined right away and attended every meeting / earned every badge / enjoyed every minute of being part of the troop. I joined too as an assistant leader and Joe’s Dad ran some of the outings.  It was a great experience and Joe was quite proud of his earned badges and of belonging to the troop.  He was especially proud on the night when the boys in his den “Crossed the Bridge” from Cub Scouts to Boy Scouts.  At that point the boys moved up to another troop and location under new leadership and into the ranks of ‘REAL’ Boy Scouts.  Joe was excited and ready.  We went with his Cub Scout troop to the informational/orientation meeting with the new Boy Scout leadership – all men – all in uniform – the REAL DEAL!  The Cub Scouts also attended several get acquainted / ‘these are some of the things we do as boy scouts’ meetings.  At one of these meetings, the Boy Scout Head Master pulled me aside and told me that Joe couldn’t possibly participate in Boy Scouts.  I was shocked!  I explained that he had always participated in Cub Scouts and that I would happily provide him with the support he needed.  The Master was persistent and said that I, as a woman, would not be permitted to attend. I insisted that there must be a way that they could find support for him.  At the next meeting, I was surprised to learn that the Boy Scout Master had arranged for a representative from another Boy Scout Troop to evaluate Joe for inclusion to his troop.  This troop was exclusively for scouts who had disabilities!  So, while Joe’s fellow Cub Scouts were learning with and getting to know the Boy Scouts from their new troop, Joe and I were pulled into a private meeting with the Scout leader of the ‘Disability Troop’.  The ‘Disability Troop’ leader talked with Joe and I and then reported that Joe definitely would NOT fit in with his group of scouts.  His troop consisted of men who were anywhere from 20 to 40 years of age – Joe was just 11!  He said that Joe belonged in the regular Boy Scout troop.  Left with no other choice, the Head Scout Master told me that if I could find an adult male who would assist Joe, then Joe could join his Boy Scout Troop.  Unfortunately, Joe’s Dad was unable to help out since he had a full time job and was also co-running a small business. There was only one person we knew that I could possibly ask to do this for us – the man who had lead Joe’s Cub Scout group for the past year.  He is a kind, gentle, caring man but it was hard to ask.  Sadly, he said no.  He said he just didn’t have the time.  Joe’s scouting career ended.  The injustice was infuriating and the heartbreak intense.

Only a year later, I wanted to help Joe build friendships with his ‘typical’ classmates at school.  There weren’t many children his age on our street and I expected that there were classmates at school who were already friends with Joe during the day who we could encourage to become closer friends with him.  I could talk with their moms and invite the friends over and support Joe in developing these friendships. I had read about a ‘Circle of Friends’ concept where a group of friends was built around a person with a disability who needed support in developing friendships. But I needed help in learning how to go about this and in knowing which friends would be good candidates.  I was also hoping that some of this interaction / friendship building could take place at school. I remember going to one of Joe’s IEP meetings full of enthusiasm and hope that I could pitch this idea to Joe’s IEP team and they would help me make it happen.  Surely they would understand the importance of friends!  I began by explaining to them that Joe didn’t have real honest-to-goodness friends.  No one asked him home for sleep overs.  He wasn’t invited to birthday parties. He didn’t get invited to go play at anyone’s house. He needed real friends!   As I tried to build my case in earnest, my heart ached at the truth of my words and I was unable to keep my eyes from welling up and overflowing.  I told them about the Circle of Friends concept and I asked them for their help.  I was met with a very long period of silence  as the people in the room looked from one to the other, each not knowing just what to say – how to go about saying no.  I don’t remember who spoke or what exactly was said.  I do know the answer was a definitive ‘NO’.  The explanation was something along the lines of “That’s not our job.”  The messages I heard were:  ‘That’s your job.’  ‘Friendships aren’t important.’ ‘That would be too much work.  And we don’t believe that what you are asking for is even possible!’ I felt alone and hopeless.

One more, quick story:  Joe was in high school.  He has always loved theater and has been involved in acting, on and off, since third grade.  He took the theater classes at high school with support from the Special Ed team.  But, in order to perform in the high school’s theatrical productions, students had to join the theater club and stay after school to rehearse.  At that time I had a full time job and was unable to be at the high school to support Joe during the after-school time frame.  I asked his Special Ed teacher if anyone could be found to support Joe after school for this.  I was told that ‘No, it would probably be very difficult to find anyone who would want to stay after school to support Joe.’  No sense even asking around.  End of story.  I felt defeated.

As I relive these and other stories of Joe’s life, the memories of those struggles are so clear and the pain I felt then resurges as though it had never left.  It is now quite easy for me to see why I am so ‘gun shy’ about asking others for help on Joe’s behalf.  Having asked for help in the past and experiencing the pain of having my child rejected, I am now literally afraid of experiencing that pain of rejection again.  I realize too, that the one thing that feeds that fear WAY beyond reason is my clear EXPECTATION of being rejected.  For, even more than the past rejections themselves, it has been the messages that have come with these rejections that have had such aprofound, lingering impact.  These messages were crystal clear:  Joe isn’t good enough.  He isn’t normal. He isn’t capable. He isn’t important.  He isn’t worth the trouble.  He doesn’t belong with us.  We don’t want him.  No one would want to be his friend.  No one has time for Joe.  He belongs with others ‘like him’.

If I listen to these cruel messages and let them guide my choices, I could easily be led towards places and programs that have been built exclusively for people with disabilities. After all, what I have heard is that Joe belongs with others who have disabilities, not in regular places and regular programs with everyone else. Asking for help from agencies who build these ‘special’ places and programs is easy – they welcome Joe.  There would be no rejections there!  It would be so much easier.  I wouldn’t have to ask, all I’d have to do is sign him up.  I wouldn’t have to fight to get him in.  Joe or I wouldn’t have to prove that he is capable of anything – they don’t have expectations.  I could avoid ‘the hard stuff’ of building Joe’s network and helping him find his place in the ‘real world’.

Thing is:  I know that these messages are not true.  I don’t believe in my heart of hearts that Joe belongs only in groups of people with disabilities.  I don’t believe that anyone does.  Every person deserves the same opportunities and experiences and daily life as anyone else.  Joe belongs with ordinary people in his community doing the things he loves with the people he cares about.  And there are people out there who do want to spend time with him and who will love him simply because he is Joe.

Candice talks in another post about the 3 Monsters that hold us back from worthy goals.  As I reflect on past experiences, I realize that the messages I have heard throughout Joe’s life continue to feed my 3 Monsters and keep them alive and well.  But, as Candice explains in her post, now that I recognize what is holding me back, I can set those monsters aside so that I can move forward.

I know in my heart that there are people out there who WANT to be in Joe’s life.  And I have Starfire to help me find those people. As I witness more and more people coming into Joe’s network, I am learning that bringing people into Joe’s life really isn’t so much an ‘ASK for help’ as it is an invitation. It is an invitation to a wonderfully rewarding relationship.  So I WILL do my part.  I will INVITE. Because it is only by my inviting people into Joe’s life that I can help Joe build the rich network of friends that he WILL have in his life.  And I firmly believe that the more people Joe has in his life, the richer, more vibrant, and safe his life will be.  Some things you just know ~ if only because your heart tells you so.

“Why then the world’s mine oyster, Which I with sword will open.” 

~ William Shakespeare

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My husband wrote the following as a preface to a ‘Vision of the Future’ plan we developed for Joe seventeen years ago.  The effort was initiated by Joe’s Special Education teacher at the time, Joy Nichols Garand (God bless her!):

Joey and Mrs. Garand

“This document is intended to be a living document which may change as Joey gets older or life situations change.  At the time it was prepared Joey was eight years old.  It represents a snapshot summary of how his parents would like to see his life and his surrounding environment develop.  Therefore this represents a set of goals for which everyone associated with Joey, and even he himself, must strive to accomplish.  By so doing, we will support a very deserving person in reaching his full potential and allow him to be happy in his life. . .”

In a portion of this document, we listed our dreams for Joe.  Many of those dreams revolved around his living, as independently as possible, in a happy supportive environment.  And we wanted him to be able to go places and do the things he enjoys. Additionally, there were five key ideas that cut to the heart of what we felt was of utmost importance to Joe’s future life:

• We wanted him to “have true friends. Friends to just hang out with.”

• We hoped that he would “find someone to marry. Maybe have a family”

• We expected for him to “be employed in the community.” And that that employment would be “Meaningful. Enjoys it. Adds to his life.”

• With true earnest we dreamed that he “Be fully accepted and appreciated in his community.  Feel he is important, loved and that he belongs.”

• Bottom line, we wanted him to live a “Normal life with as few supports as possible”.

That was long back, when we were young on this journey that includes disability.  Along the way we have clung to these dreams, sometimes making compromises, sometimes experiencing triumphs, sometimes defiant, sometimes beaten down, many times hanging on by a thread.  But all along, we have always refused to give up on the dream of building a life for Joe that is as close to normal as possible.

Skip forward about thirteen years: . . .To the period in our life when we started Joe’s ‘transition’ to adulthood.   Joe graduated high school in 2007 with the same classmates that he had gone thru school with, all the way from Kindergarden.  He officially left high school two years later at the age of 21 ½, when he had ‘aged out’ of the public school system.  As with most high school graduates, there were some life decisions to be made.  When he left high school we were told that there were basically two types of options for Joe. We could ‘place’ him in any number of ‘Work Programs’ and/or ‘Day Programs’.

The Work Programs that existed were either Workshops or ‘Enclave’ work group programs.  The Workshops are a lot like regular factories except that all the workers have disabilities and the facility is a separate facility just for those who have disabilities.  Enclave work groups are groups of people, all of whom have disabilities, who are closely supervised as a group – usually in some type of community setting.  I have several concerns with both the workshops and the enclave work groups (which I won’t go into at the moment).  The biggest concern I had at the time was that Joe HATES to clean, assemble, sort, package, etc. and would require constant redirection to ‘stay on task’ in either setting.  He would not be productive.  Most importantly, he would be miserable in this type of work.

When we investigated the Day Programs, we found programs that taught life skills, worked on social skills, spent time on crafts or maybe gardening, held exercise sessions, entertained, and had ‘outings’.  These Day Programs were solely for people with disabilities with very few opportunities for real community involvement other than group outings where an occasional interaction with an ordinary citizen would occur.  In other words not too different from the high school program he had been in for the last 4 years.  He would be busy. He would be entertained.  He may gain new skills.  He would get exercise. He would have fun. He would probably even really like it.
But is that a life?

I remember being so distraught.  What did that kind of life mean for Joe?  I laid awake at night, tears flowing, mourning the normal life that Joe must give up.  He loves people!  He thrives in community! He has been raised all his life in the normal, everyday life that we, his family live!  Now he must spend his days isolated along with other adults who also have disabilities. Was he to be forever locked into the same life experience day after day, year after year?!  Is that all there is for him?!   To be trained, behaviorally modified, and entertained in an endless loop?  To be isolated from the rest of society so that building relationships with regular people in the community would be near to impossible?  To be ‘PLACED’!! – as in – AWAY – on a shelf?!

Today, I look at my other two sons: one who has already graduated high school, and my youngest son who is a high school senior this year.  How different their choices are.  How wide open and exciting life is for them – endless possibilities!  I remember being told as a graduating senior myself:  “The world is your oyster!”  Life is there for the taking.  All seems possible! Busting into adulthood is liberating, exhilarating, intriguing, wondrous, albeit a little scary.   This new-found ‘almost adulthood’ also carries with it expectations.  Family and friends expect that you will find your niche, make something of yourself, learn to stand on your own two feet, become productive, and contribute in some way.  You expect to take charge, make your own choices and begin to build your life your way, maybe even get married and have a family.  You can expect to meet many new people and make new friends (and loved ones) to go and do and experience life with.  Life is good and you are just getting started on an exciting adventurous journey that will take many twists and turns as you age and experience life.

One thing’s for sure, you do not expect to be on an endless loop of being trained, modified, and entertained!!!  You have no intention of being . . . Placed – Away – On a shelf!

I heard a quote not long ago that stuck with me (unfortunately I do not remember the source in order to give proper credit – my apologies to the author!).  It goes something like this:  ‘There are some truths you know because you have learned them.  But then there are other truths you know from deep within you that you didn’t learn – you just know.’  And I can tell you that I just know that this disparity between how Joe’s future looks and how his brothers’ futures look is just not right.

Fresh out of high school, Joe should be looking at a wide open and exciting life – with endless possibilities!  He should be busting into adulthood – liberated, exhilarated, intrigued, and in wonder knowing that anything is possible.  We should be expecting him to find his niche and make something of himself.  We should expect him to be productive and contribute.  He should be allowed to build his own life, maybe get married and have a family.  He darn well should be able to expect to meet many new people and make new friends (and loved ones) with whom to share his life!!

Pardon me.  Please allow me to step back off my podium – I admittedly do get carried away at times.  

Back to those high school / adulthood ‘Transition Planning’ days:  Unhappy with the options that had been presented so far, we kept looking.   Against the advice of the Transition Team at the high school we looked at one last ‘Day Program’:  StarfireU.  The Transition Team had told me that StarfireU was for ‘higher functioning’ students and that Joe wouldn’t fit in.  But, I thought, ‘How could it hurt to look?’  So we (Joe, his Dad, and I along with Joe’s Service Facilitator) went for a visit – just to see.

The minute we walked thru the door, we knew that this place was different than any of the other programs we had visited.  The respect with which Joe was received blew me away.  Instead of looking at me when they asked questions about Joe – they asked him.  And they listened to what he had to say.  They answered his questions – no matter how ‘left field’ they were.  Joe was treated with the same respect that was shown to my husband and I.  The description of the program was so intriguing.  StarfireU members (attendees) spend some of their time in-house with various seminars taught by ‘Community Partners’.  These are ordinary (and some not-so-ordinary) citizens who are drawn in from the community to share knowledge and passions.  A lot of the members’ time is spent out in the community; meeting people, going places, doing things, volunteering, experiencing life!  These aren’t ‘outings’, they are engagements.  Interaction and engagement with any and all ordinary citizens is encouraged, supported and facilitated.  The StarfireU program is definitely a program like no other.  You can’t leave Starfire without being uplifted, inspired and challenged to think (dare I say, dream) in a new way.  Of course we signed up!

Now, after experiencing StarfireU for three years, I can tell you that enrolling Joe in StarfireU was the best decision I have ever made.  The experience we have had at Starfire has changed our lives and will continue to change Joe’s future.  You see, Starfire is not about training Joe – or modifying him – or entertaining him. There is no endless loop at StarfireU.  This is a four year, carefully planned and executed, person-centered / asset(gift)-based experience.  StarfireU launches participating members into a life full of possibilities along with a supportive network of friends and family.  Starfire is all about helping Joe build a full, rich ~ as close to normal as possible  ~ life that is productive, adventurous, and experience filled.  Central to Starfire’s efforts are helping Joe find those friends and loved ones who are thrilled to share in Joe’s life.  These are the people who are critical to supporting and sustaining Joe as he embarks on his OWN exciting adventurous journey that will take many twists and turns as he lives the full rich life he deserves.

And so, with Starfire’s help, we are starting to discover that the world is Joe’s oyster too!

Written by guest contributor Jack Pealer

The song from South Pacific goes:

You’ve got to be taught to be afraid
Of people whose eyes are oddly made,
And people whose skin is a diff’rent shade,
You’ve got to be carefully taught.

And, the teaching and learning happen, mostly, outside the awareness of the teachers and the learners.  I remember one bit of that teaching and learning in my own life.

About 60 years ago I learned something about deaf people, and I’ll bet that not many now know what I learned then.  I learned that people who can’t hear could run faster than anyone else.  How did I learn that?

The house where my family lived from 1949 until nearly 1960 was just two blocks from the Ohio State School for the Deaf.  Of course, we called it the “deaf school.”  The school in Columbus was–and still is–on land that had been a golf course before the state acquired it around 1950.  A major cross-town street runs past the entrance to the school; the campus was—and still is—a cluster of one-story buildings sitting several hundred yards back from the street.  Now, today, as an adult, I know it is only several hundred yards.  When I was ten, it looked like the buildings were a mile or two away across a vast plain of the former golf course.  That vast plain was our playground.  There was no other in the neighborhood.  We played football and baseball there.  We were pirates, cowboys, adventurers in the heavy shrubbery that lined the school’s entrance driveway.  I remember one attempt at civil engineering—building a “dam” across a tiny stream after a heavy spring rain.

But games ended when we saw people—students–walking out of the school toward us.  On many afternoons, young people from the school would go in groups toward the street—to catch the bus or walk to the nearby shopping center.  We knew we had to give them plenty of distance.  That was because we knew there was something funny about them.  They made odd movements with their hands.  Some of them made unusual sounds to one another.  And, we knew, they could run.  We saw them and either hid in the shrubs or headed for home because we knew that, if we got too close and they spotted us, they would run after us, catch us, and do unspeakable things to us.  We abandoned the field; we knew better than to hang around.

We just knew.  We learned, seemingly, from the air.  I can’t today recall any specific event that tells me how we learned.  I do understand now the effects on us of that distance across the field and the messages about difference that distance and separation transmit.  I can report that no one I knew was ever harmed, chased, or even approached by any student from the School for the Deaf.  I suspect they were as apprehensive about us as we were about them, and I wonder sometimes what stories they might have held or told about my friends and me.  What unspeakable acts were we believed ready to commit?

Separation (I never went to school with other kids who could not hear) and distance(that several hundred yards that looked like miles) turned out to be effective teachers.  It took me a long time to get clear about what I “knew.”  It took a long time not to be afraid.

“It’s all about the ability to find outlets that you can use creatively… We have to emphasize people becoming connectors in their community. “

Written by guest contributor Diana Lynn Mairose, Starfire Board Member

I have been involved with Starfire for 12 years. Since I first started in 2000 as a member, we have doubled the space and the staff, and the creativity behind what we do. I see Starfire as leaders in innovation.

As a Board Member at Starfire, my role is to represent everyone who contributes their time, efforts, energy, and creativity to such a great organization. I see how much energy and resources we need so we can further our mission and what we believe in.  It is different to see other perspectives, and keep in mind our future and how it will benefit members.  I represent every member.  It can be challenging because sometimes it takes rewording things, sometimes unexpected things happen, but we all have to think it out.  We all have a voice. Being on the Board for Starfire, I have become a better thinker, it has taught me to think more because it impacts so many people.

Starfire is on a path to building more inclusive communities, and it’s a great mission. It’s so much stronger than it ever has been.  The biggest hurdle I think we have is to teach others our mission- at first how they see it might be different than how we see it.  Different in how they take part, their lifestyles, their environment.  Just like my definition of community may be different from someone else’s, everyone can take part, just in different ways. Logistics like transportation, where people live, people’s lifestyles- it’s just going to look different for each person. Some people might have to take more steps to understand.

It’s definitely possible.  It’s all about the ability to find outlets that you can use creatively. People can begin by taking the time to listen, to find out what people’s dreams are.  It might not happen on day one or day five, but you have to get to know people.  We have to teach people to think outside the box, try new things. We have to emphasize people becoming connectors in their community.

“This is always the hard part.  I know people are fundamentally good and kind and nice. However, that isn’t an excuse or a justification.”

Written by guest contributor, Kathleen Cail. You can read her earlier post here.

I recently attended a fabulous conference, hosted by Starfire, which was basically about community development. Part of the discussion was about “bending over backwards to enhance the image” of people who experience disability.  We were focusing on “code words.” I worried that when we are too politically correct about words, we end up creating barriers for the very people we want to knock down barriers. We spend so much time talking about “code words” that I worry we make people feel as if they are walking on egg shells and rather than getting to know a person, people avoid that person because they are afraid they might say the wrong thing. Some people in the audience disagreed and said that words do matter because words often reflect what is meant and believed.

Today, I picked up my daughter at school and she was very excited to show me the biographic pamphlet she had completed.  Apparently there is an aid or co-teacher in the classroom who helped Grace with this by scribing for her.  The 2nd paragraph read, “Grace suffers from Muscular Dystrophy. She has many challenges in her life.”

So much for my soapbox about words earlier that morning.  I was on fire. These are not the words of a 13 year old and these are certainly not the words of my 13 year old.  I wish I could say that Grace would not likely have mentioned that she has Muscular Dystrophy, but that’s not true. This is a big part of who she is right now. We hope that we can lead her away from this, as time goes on.  However, she would never say she suffers from it. I was furious. Whenever I have been asked to introduce myself, I never mention that I am overweight, have a tendency to be controlling, get migraines, got a C in high school chemistry and math is my weakest subject. It’s not that I avoid these things, but it’s not what people want to know about me and it is not what I am going to use as common ground in a potential relationship.  Muscular Dystrophy is not going to be the common ground for a potential relationship at Grace’s new school, either. Muscular Dystrophy is going to be something that makes Grace different and last time I checked, what school-aged kid wants to be different, particularly a 13 year old middle school girl?

Words DO matter and there are “code words.”  To me these code words sound a little different from the list we constructed at the meeting.  To me they include words/phrases like, “we are all about inclusion” or the “Downs kids.” That one always makes me think ofa dystopian world where we have the “fatties,” the “gingers,” the “uglies,” the “short people,” the “Epis” (have to carry EpiPens), the “ADDs”, etc. We just don’t do that. But for some reason, we do feel the need to label people experiencing disability.  It is horrifically “politically INCORRECT” to say, “the blacks” so why would we say “the Downs kids?”  I’m truly baffled by this.

Words DO matter.  Even today I received an email about trying out for the school play.  I had asked for some information since Grace is interested in trying out. In fairness to the teacher, Grace has had a very difficult transition to her new school and for the first two days, she flat out refused to go to her classes because she was afraid of the bell ringing (this is considered non-compliant behavior—forget that it really is true anxiety exacerbated by the fact that Grace spent 10 years in a school that had no bells at all).  In reading the email, I couldn’t help but wonder if all the parents whose children want to try out for the school play received this email and if it had similar (what I read as code) words,

 “…With that being said, expectations about rehearsal time, behavior and keeping up her academics would remain the same if Grace chooses to do the play. I know that everyone is working hard to give her a positive, successful experience…She will need to be at rehearsals and positively contribute when she is there…If the acting part of the play seems like it is going to be too much, there are other ways to get involved besides being on stage!”

We have only been at this school for a few weeks, so I am trying to tread lightly.  It is hard to stay calm in the face of this, but it is so important to remain calm in order to “keep my eyes on the prize”—developing a great school community for my daughter, filled with teachers, administrators, friends, and peers who know my daughter, value my daughter, like my daughter and invite my daughter to truly be a part of the community.  A community that has opportunities my daughter can seize and enjoy. Part of achieving that goal will take education on my part and theirs.  We all have a lot to learn and it is a journey for me, Grace, and for everybody else.  I saw a car magnet the other day that read,“People are good.”  I think that is true.  People are good.  We just all sometimes make mistakes or have more to learn. That goes for Grace, me, and the people we meet.

I took a big risk at approaching “Grace suffers from Muscular Dystrophy” as a teaching moment. At the end of “Meet the Teacher” night I approached the social studies teacher and introduced myself.  I told her that it was very hard for me to bring up this subject, given that is was “MTT” Night and we were a new family, but that it was very important to me and something I felt couldn’t wait.  I told her what came home and how that made me feel and what my concerns were with it.  I picked the right person with whom to take the risk.  She thanked me for sharing this. She said that she learned a lot about Grace and who we are as a family and what we want for Grace. She also told me she learned a lot about perceptions of people.  She wanted me to know that the aid who wrote this is a very nice person and would never have wanted to offend Grace or us and would not have seen what she wrote in this way.  This is always the hard part.  I know people are fundamentally good and kind and nice. However, that isn’t an excuse or a justification. I know that is a default response.  I make that same default response—“I didn’t mean it.”

Truly the teacher was great, but my struggle is always how do I move the conversation beyond the default response. What I want to say but don’t is, “Since she is nice, she will understand then that what was written suggests pity, neediness and less value and that is not an image we want for Grace and that is not what we want people to see or feel when they interact with Grace.  We want people to see Grace for who she is. Grace is a typical adolescent who has hopes and dreams. She has crushes on boys and favorite musicgroups. She likes to dance and sing and hang out with friends. She hates homework. She has been known to throw her medicine down the sink, take off her nighttime braces, when she should be wearing them, and refuses to play on any team that is special needs only. She bugs her brother and her brother bugs her. She thinks her mom pushes her too much to do homework and study and doesn’t like when her mom tells her what to do. She thinks her father is way more fun. She is a democrat and Obama is her hero. If she could watch TV all day, she would. She loves to hug and hold hands. She loves to talk and is very observant. She asks good questions. She’s gorgeous and she’ll tell you she has beautiful blue eyes. She loves the Reds, the Bengals, the Red Sox and the Patriots. She hates the Yankees. Grace has been to many foreign countriesand many states in the US. She loves her dog Hank, but not the cat. She loves horses and does horseback riding. She swam on her old school’s swim team and hopes to swim on her new school’s swim team.

Does this sound like someone who is “suffering from Muscular Dystrophy?” Do you feel sympathy for the child described above or do you want her on your team? Do you want to cross her? Make her do something she doesn’t want to do? Or be a Yankees fan or any fan but a Reds, Bengals, etc. fan?  Words do matter in helping Grace’s image.  I think you know the image I want for Grace, so I think you know the words I would choose.  Words DO matter after all.