But I read it, read it again, and then plagiarized it with Starfire’s information.  I think it helps explain a lot of what we’re about, what we believe, and why we’re doing things like offering membership to everyone, why we care about people being seen as valued, having friends and being a friend, being loved, and loveable, being a citizen. 

I’ve highlighted the parts I’ve changed.  The plain text (non-highlited words) are Mark’s original words.  The highlighted is Starfire’s story put in.

You can read Mark’s original, full text here, if you’re curious.
http://abcnews.go.com/blogs/technology/2012/02/facebook-ipo-mark-zuckerbergs-letter/

Sitwell’s Cafe, Ludlow Avenue

There are a few places in Cincinnati where you are sure to draw glances from regular patrons, likely peering out from behind their soft covered classic, sipping the same cup of coffee for hours, and for a moment feel taken to some dark corner in Europe far away from home.  Sitwell’s café in Clifton has that potential; it draws out the vagabond, the hippie, the dreamer, the beat poet, the mysterious innovator in us all.

So, what better place for Nikki Booker, Catie O’Keefe, and Jeni Jenkins to have their first encounter together?

It’s July and a gorgeous, sunny day. Clouds cascade above, casting light shadows across Ludlow Avenue, while inside three women gathered around a table tucked out of view of the general public begin making plans. Nikki has called the meeting.

“I want to make this story come to life,” she says, running a hand over the wrinkled cover of her favorite book, Waddie Welcome and the Beloved Community. “And by come to life, I mean turn it into a play.”

Flipping through the pages, stopping to explain certain photos or read from it aloud, it’s as if she’s holding her very own scrapbook of Mr. Welcome’s life.  She knows the book from cover to cover.  She has seen the story play out on stage in her mind.  But now she has to convince Catie and Jeni, award-winning playwright and producer respectively, to join her in making this dream happen.

“This describes me. I feel it,” Nikki says before reading a passage.

“At first glance Waddie Welcome looks anything but influential, beset with cerebral palsy and approaching nine full decades, he is mostly quiet and unassuming. But beneath the years, beneath the persona of disability, lies fierce determination, a determination that has influenced thousands across the state, the nation and the world…”

With that, the silence of invention and creation settle across the round, wooden table. Nikki waits patiently for Catie and Jeni’s response.

“So… where are you thinking the play will be?” Catie breaks the silence.

“I already know the place,” Nikki responded reservedly. “If I’m going to do this, I might as well go big.”

What transpires next is the start of a great collaboration.

Since this day, Nikki has traveled to Savannah to meet the author, developed a strong production team with Catie and Jeni as avid supporters, and continues to inspire people in Cincinnati with the story by hosting readings throughout the city.

As for opening night, the picture in Nikki’s mind is growing clearer, and is just as big as she imagined it.

The play will premier on stage at the historic Emery Theatre, “a 1,600-seat, acoustically pure symphony hall,” bequeathed by Mary Emery 100 years ago with the vision that, “high-quality art inspires individuals and communities to invest in themselves, and that inclusion and respect lead to a better society.”

“I am making history,” Nikki now says. “Not only for me but for this whole state, the world, for people with disabilities… Don’t just judge a book by it’s cover, you have to find the book and read its pages.”

Or in this case, watch the story come to life on the big stage.

To support the adaptation and theatrical performance of Waddie Welcome and the Beloved Community, go to Kickstarter and contribute today.

Well, my Joe won’t have any of that!  And, although the ‘Joe’ in Kathleen’s story isn’t my Joe, they do seem to have a lot in common when it comes to enjoying people.  See, in Joe’s opinion, if there are people around – the opportunities are boundless.  There are fascinating stories to be heard, wonderful families to learn about, exciting adventures to hear about, laughter to share, horsing around to enjoy, valuable information to exchange, real person to real person connections to be made, a worthy friend to get to know, another human being to nourish and be nourished by . . . . another soul to be brought into the warm glow of human to human connection.

Doesn’t matter where you are, if there is another person at hand, Joe will strike up a conversation.  And he won’t start with small talk like, ‘Nice weather we’re having.” or “How about those Bengals?”  Nope. He goes charging right thru that polite/distant veil and goes straight for the person inside with “Do you have kids?” or “Nice husband you have there!” or “I want to know how you get the ideas for your books” (said to a writer at a vendor’s table).  And then, he’s off and rolling – listening to the person’s stories and asking more probing questions about what he has heard.  In a few minutes time, he has the
person telling his/her life’s story.  And the two of them are laughing and talking like they have known each other for years.  They both part company, smiling and obviously uplifted by the experience.  I have seen this scenario play out time and again.  And I have come to realize what an amazing gift Joe has for making real heart-felt connections to others.  What good he does for the world, one person at a time!

But, here’s the thing:  I haven’t always felt this way.  I used to think that this was a ‘behavior’ that needed to be ‘fixed’.  I know, hard to believe.  But I think you will understand my journey if I take you back in time, and you follow along for a while……

Joe has always loved people – from the day he was born, I think.  He has always been joyful and loving.  He began interacting with and accepting strangers from the time he was one year old.  By the time he was 2 years old, there was a constant stream of teachers, teacher’s aides, speech therapists, occupational therapists, physical therapists, neurologists, medical specialists, and evaluators from all corners of the professional world. He started attending the local elementary school at age 6.  All the staff there loved him and freely gave him hugs.  So from his early beginnings, it became natural for Joe to trust people and to become a ‘hugger’.  When Joe reached middle school (he was around 12 years old), one of his special education teachers told me that we really needed to get Joe to cut back on the hugging.  He hugged everybody – teachers, students, even strangers.  Students his age did not go around hugging everybody and it looked ‘inappropriate’.  Plus, it wasn’t safe.  Joe knew no strangers and would most likely walk off with anyone who invited him.  I was a little hurt because I know he did it out of affection and his love for people.  But there was some logic in what I was told, so I agreed.  And my husband and I joined the staff in coaching Joe to shake hands instead of hugging.  This was somewhat effective.  He learned that shaking hands still helped him connect with people, so he went along.  Problem is, he would shake hands with the same person four, five, six (or more) times (also inappropriate).

So, by the time Joe got to high school at the age of 15, he was a hand-shaking maniac.  The Special Education staff at the high school said, “We really need to do something about Joe’s constant hand shaking!  It is really inappropriate.”  Additionally, Joe still approached strangers with the same openness as if they were a solid friend.  We were told that he would never be able to ride a Metro bus because of the potential danger it posed – he would readily go anywhere with anyone.  He knew no strangers.  He could never be left alone or go into public places alone because of the threat of predators.  It was upsetting and seems harsh.  But, please know that these were well meaning professionals who were truly doing what they felt was right to best prepare Joe for an adult life.  Also,  at the time, I was in agreement as to the problem and the course of action.  So, efforts were launched to teach Joe that one does not talk to strangers.  People only shake hands once per encounter.  Support staff who accompanied Joe in the halls at the high school or into the community on outings were constantly interrupting his attempts at ‘inappropriate social behavior’.  Joe tried, I really think he did.  But one hand shake just did not do it for Joe.  And it just wasn’t in him to not talk to people. At the time, his conversation skills were not that well developed and he struggled to make the personal connections with people that meant so much to him.  He began reverting to the hugging mixed with hand shaking.  He continued to seize every opportunity to try and interact with anyone and everyone.  Then along came an attraction to girls.  Hugging took on a whole new meaning.  And so, there we were again, inappropriately hugging everyone.  Joe’s main purpose in life at the time seemed to be to socialize.  He spent every available moment throughout his day talking, shaking hands or hugging.

To compound the issue, Joe’s need to socialize interfered with another important component of his future.  In high school, Joe was enrolled in a program to help him develop job skills for a potential job as an adult.  Joe was given a variety of job assignments in the community to help him explore what might be a good fit for him.  Unfortunately for Joe, these were all jobs that required constant attention to the work and little to no interaction with other people.  While these jobs may work for some individuals, they definitely did not work for Joe.  Predictably, he was much more interested in interacting with the people around him than in accomplishing the tasks at hand.  I was told that Joe could never hold a productive job in the community without constant supervision because he was too focused on being social and could not focus on his work.  So I believed that Joe’s constant need to connect with people was holding him back from having a real job in the community – a real place in the world.

I wanted Joe to be able to have a job in the community, to be accepted in the community, to be safe.  All this didn’t exactly feel right, but the arguments were very convincing and the stakes were extremely high.  So, my husband and I ‘bought in’ on the program of fixing these behaviors.  But, it was hard.  How could we stop Joe from constantly socializing?  Joe would approach people wherever we were.  He wanted to engage them but struggled with conversation.  He would say something that was on his mind that had no context in the present.  People wouldn’t know how to react or talk with him.  He would resort to hugging or constant hand shaking to make a connection.  It was embarrassing for me and for the other person.  I started a reward program with Joe to help him resist hugging or hand shaking with everyone he ran into.  It was fairly successful.  In the mean time, he got a lot better with conversations.  I coached him on how to talk about something the other person might be interested in.  It was a constant effort to remind him to not hug, but he did improve.  However, Joe would still approach people – people who wanted to be anonymous.  He would ‘bother’ others in line, store employees, people in church pews next to him, people in waiting rooms, people on the street.  Very often he would throw his arm around complete strangers.  My husband and I were constantly ‘pulling him off’ of people.  It was embarrassing.  It was frustrating.  It was futile.

AND THEN, some exceptionally wonderful, brilliantly intuitive, insightful people came into our lives.  After high school, Joe joined StarfireU, a place where individual gifts are expected, discovered, valued, and nurtured.  Staff members there started telling me things that were contrary to what I had heard before.  Bridget Vogt said, “If I ever go into a room full of strangers, I want Joe Wenning by my side.”  Tim Vogt wrote on Joe’s PATH poster, “Joe, there are people who need you in their lives!” Other staff members at StarfireU started to tell me that Joe energizes a room with his enthusiasm; he enlivens guest speakers with his insightful questions; returning guest speakers miss Joe’s energy and interaction in their sessions when he doesn’t attend;  Joe is so empathetic and is a great ‘cheer leader’  or comforter for others.  I am told time and again how valued Joe is for his gifts with people.  I start to realize that what I had been trying to squelch – the part of Joe that would not be held down – is in fact, Joe’s most valuable gift.

And so, I begin to let go of the control.  I begin to stand back and watch as he ‘does his thing’.  I witness human to human connections as he reaches out to a stranger.  I watch as he touches the heart of another person.  I find myself following him as he enriches the lives of others.  And, now that I am not in his way and he doesn’t have to struggle against me to explore his ‘people passion’, I notice that he is making tremendous progress towards more ‘appropriate behaviors’.  He is hugging less and conversing more. He responds when I try to give him better ways of approaching people.  He senses that I am not trying to control him any more – I am trying to help him be more effective at doing what he loves most.  I still struggle with the danger of predators – it is real.  But Joe has made it clear that the life he chooses must be full of people.  I need to honor that and yet find ways to protect him.  But maybe, it’s just possible that, having more people in his life actually does protect him.  I am learning too that there is a reason for every behavior – and sometimes that reason is me.  And as for those of you who want to remain anonymous:  good luck if you happen to be around Joe Wenning.  You might want to stand in a different line because I am not about to stop him, I know he is giving you a gift!  It is still a journey for us.  But I find that each time I try harder to follow Joe instead of stand in his way, I am rewarded.  This new path that we are on is not futile – it is fertile.

 Joe and I recently went to the Union Terminal’s African Culture Fest.  Joe loves culture and is looking for a way that he might volunteer at the history museum (history is another one of Joe’s passions).  So, this was a great opportunity to show up at the museum, get more comfortable there, and meet some of the other volunteers.  Before we got there I promised myself that I would follow Joe and would only offer support when he needed it – no matter how embarrassing it got – no matter how uncomfortable the other person was – no matter what.  It was his day and he was in charge.  He loved it, of course.  He chose which programs we attended, what vendors we interacted with, and which people we approached.  The most remarkable interaction of the day was with an artist (woodcarver/painter/dancer/drummer) named Michael.  Michael was demonstrating his woodcarving and that attracted Joe right away.  Joe struck up a conversation with, “I want to know how you started this woodcarving?”  And so it went.  Michael talked about carving techniques and he told several of the stories around his wood art. He showed us some of his Batik paintings. He formed a genuine connection with Joe and me (because I was drawn in and loved the whole interaction too!).  Joe recognized Michael’s talents and suggested that he would be a great person to teach a class for StarfireU.  So we asked him if he would be willing to meet with some of Joe’s friends to share his work.  He enthusiastically said, Yes!

Michael is a fascinating and warm human being.  But then, Joe already knew that!  And you know, Joe didn’t hug Michael once – well, I don’t remember if he did.  And even if he had, it would have been quite appropriate!  The very best part of the day happened in the car, on the way home.  As Joe reflected on his day, he announced, “You know what I like about me?  I’m a good connector!”  Now who could argue with that?

And thus, on our journey towards the 5 shared experiences, Joe has made great strides towards making  contributions and I have made progress towards learning to respect the person that is Joe Wenning!

p.s.  If you ever get the opportunity to be party to one of Joe’s conversations with a stranger, I highly encourage you to join in – it is a wonderfully enriching experience!

It’s such a great way to start the day.  This one popped up last week:

Collaboration certainly should find its basis in communion but frequently it does not. We can work together without really caring for each other or being bonded together in love and communion. . . We work together for a common goal. Communion however, is bonding, caring and sharing which flows and finds its fulfillment in celebration.

I bolded the line that stuck with me.  I can’t get that out of my head.

I also follow Al Etmanski on Twitter, and over the past month or so, he’s had a series of guest bloggers opining on the question “What are you skating towards?”

The other day, he had John McKnight (who I’ve learned a lot from) talking about “cooperation.” The next day, he had Delyse Sylvester talking about “collaboration.”   (And I would be remiss if I didn’t point out Mr. Etmanski’s wonderful post about Mr. Vanier from last year.)

So when everyone is talking about collaboration, cooperation and communion within the span of a few weeks, that means the nexus of the universe is telling us something!

It makes me think of what we’ve been learning lately about the importance of families in our work, something Kathy Wenning is helping us understand.    I think about staff, who disregard families (usually in the admirable effort to promote people’s individual rights as an adult) and unintentionally miss out on the power of working together.  I think about families, who say to staff “You’re only in it for a paycheck,” and while sometimes true, is too broad a brush and leads to distance between efforts that would better serve someone if they were stitched together.  I think about leaders who say “You’re being paid, just do the job,” or (even worse) “Keep a professional distance and separate your work and home life.”  They have no idea the damage they’re doing, not only to the efforts to promote inclusion, but to the staff themselves, who are forced to “clock out” their hopes and dreams and desire to be of help to their fellow citizens.  I think of families, philosophers and professionals who give up on the general public to support people, frustrated by neighbors who treat people with disabilities in a childish way, or by employers who give people menial jobs.

I remember times when I’ve been all of those people on all sides of those conversations.  As I step back and look at it, I see the spirit of what Vanier is saying.  We’re all “collaborating” and “cooperating” and working together (supposedly toward the common goal of helping people have good lives), but do we really care about each other?  I imagine that’s more of a rarity than we’d like to admit.  And what does that mean for the people in middle of all of that detached collaboration and cooperation?

I only know a few people who sincerely appreciate everyone in the inclusion equation, no matter what level they arrive at.  It’s difficult to have conversations with colleagues or families who we may perceive as being ”behind the times” or ”out of touch.”  But we’ve got so much to learn from each other, and none of us hold the answers in isolation.  People are counting on us to get it right…together.  Kathleen showed great patience and tenderness with her story the other day.  That’s the spirit of what I’m talking about.  It has something to do with disappointment, yes, but acceptance and understanding as well.

I guess that’s what I’m skating towards this year…To find more common ground between people who may seem to be in separate camps, but share interests…To figure out what happens when families, staff, and connected citizens care about and celebrate each other.  I think it’s something really cool.

By the way, you can get the quote of the day sent to you by clicking here.

The grocery store is always so busy during the holidays. There’s a frenetic feel to this time of year, and people become anonymous as they search the aisles for those items they buy once a year – the dates, molasses, ginger, candied fruit.  I’m anonymous too. I haven’t lived in this area for over 20 years so I move unrecognized through the aisles. I’m also in a hurry. I’ve left my mother in the car and it’s cold outside.  As I wait in line at the check-out, I am thinking of my mother – she get’s confused so I am wondering if she has forgotten why she is sitting in an unfamiliar car in the Market Basket parking lot. She might not even remember that I am the one she spent the afternoon with and that I’ve run into the store to pick up an ingredient I need for dinner.  Perhaps she feels anonymous.

She’s young, and very cute, the way single, 20-something young women are. She is only carrying a basket, so she didn’t need much on this trip.  She looks like she might be an independent woman, who has an apartment and is starting out in her career, post-college.  There is something about her that seems lonely, or insecure, or just unhappy.  She looks like she could use some joy.  Along comes Joe. He might be her age or perhaps a year or two older.  He’s tall, has dark wavy hair, bright eyes and a warm smile.  He looks like he is caring and fun to be with.  I hear him introduce himself to her.  “What’s your name? I’m Joe.”  She tells him her name is Anne.  A few minutes later, Joe invites Anne to come into the line that I am in –it’s shorter.  Anne stands behind me.  Another woman asks Joe how he knows her name and comments on how he knows everyone.  Joe happily exclaims, “We just met. I introduced myself to her.”   Joe then walks up to Anne and extends his hand. It’s seconds, but it seems like an hour to me, as I watch this potential relationship, or a one-time friendly moment, unfold.  I’m an older, wiser woman than Anne, and I see so much opportunity in this moment.   Anne doesn’t though. Anne doesn’t extend her hand and looks away.  Joe has recognized her, yet she is making Joe anonymous, with this one decision. Joe quickly fills the emptiness of the moment with, “Oh, I know some people don’t like shaking hands.  That’s OK Anne. It’s nice to meet you.”

What Anne doesn’t know is that she missed an opportunity to brighten her day, at the very least and at the most, the chance to start a friendship with a lovely young man, who she will likely see most days she comes to the grocery store.  It is an opportunity to connect, be less anonymous, and grow from the experience of Joe.

Joe is a bagger at the grocery store.  He is friendly and helpful.  He isn’t inhibited. He is honest, open and direct.  He follows a different set of social rules. His rules are based on the desire to connect with people and build relationships. Joe is free from the social rules that preclude you from finding common ground in someone you’ve just met.  Joe has a developmental condition.

In this moment, I want to turn to Anne, in the safety of my anonymity, and say, “this could be my daughter you are ignoring,” or “would you refuse a handshake if this were some successful investment banker or doctor? “ I don’t though.  I remember that everyone operates in his/her box of life experiences.  Maybe someday, Anne will have a friend who works with people living with a physical or developmental difference, and be invited to an event, where she will get to know Joe. Maybe Anne will get married and have a child with a developmental disability and her box of experiences will expand and blossom and she will be open to appreciating, respecting, and recognizing someone like Joe. Maybe someday Anne will accept that chance meeting and receive the remarkable gift of connection and relationship that Joe was willing to give.

I was so happy to see Kathy Wenning join the Cincibility “blogroll” with this post the other day.  Her son, Joe, is in his third year at Starfire and is one of the best conversationalists you could ever want to meet.  Kathy is helping us take the lead on exploring how families and Starfire staff might work together more closely, and reading her words, you can tell that we’ve got a fine fellow traveller along the journey.

Thinking about “families” lately has been top of mind for me.  In particular, I’ve been thinking about the tension around the relationship between families and paid professionals.

This isn’t unique to people with disabilities, of course.  Talk to any parent and you’re likely to hear about the teachers who they love/loathe at some point.

But I’m starting to understand that poor relationships are not just harmful to parents and professionals, which they are:   Hurt feelings, being left out of decisions, feeling like progress is being undone…these are common feelings and abundant on both sides of that equation.

But there’s a bigger loss:  adversarial and abandoned relationships between families and paid staff really represent a catastrophic failure on both sides to actually help build a good life for people with labels of disability.  I know that may sound melodramatic….”catastrophic, Tim?  C’mon, it’s not that big of a deal.”

It is that big of a deal.

A few years ago, a young woman (let’s call her “Maggie”) started at Starfire.  Maggie is a bright and friendly person; she’s smart, funny, loves yoga, and has an infectious laugh.  She talks and walks a little slowly, but as long as she takes her time, she gets around and gets her point across just fine.

Like almost all of the young people in their first year of the program, there were struggles adjusting to the new people and pace of things.  About two months into the program, Maggie’s mother and father asked if we could meet and talk about it.  When the day came to meet, Maggie’s mother and father arrived and I said something like “Well, we can get started as soon as Maggie arrives.”  It was then that her mom and dad told me that Maggie wasn’t coming.  I told them that it was really important that she was with us, so we could hear from her and include her in the conversation.  We offered to reschedule at their convenience and Maggie’s dad something like “Why can’t we just hash this out right now?  I mean, she’s not going to add to anything to the meeting.  Her opinion doesn’t really matter.”

I remember telling that story to Jo with indignance…”Can you believe it?  They didn’t even care that she was in the room! ”

I was hot.  I was righteous and offended for Maggie.  How dare they!

And then Jo said, shaking her head, “Can you imagine what it must be like if the world tells you every day for 23 years that your child’s opinion and presence doesn’t matter?”

And that was the moment I realized that A) Jo is the Jedi Master of compassion, and B) I was not helping this family (or Maggie) by blaming them or pointing fingers.  In fact, I was probably further traumatizing them and taking the easy way out.  They had to accept the prevailing story about their daughter, or else their heart would continue to break every single day.  It was a coping mechanism, not a true devaluation or dismissal of Maggie’s voice.

We eventually got everything settled with Maggie and her family, and the next eight months were terrific.  Maggie explored her love for yoga and we started to work and think with her about lots of avenues for her future.  Unbeknownst to us, though, Maggie’s parents had put her on a waiting list to live at a place in Kansas for the rest of her life.

One day, Maggie’s mom called and said ”Next week will be Maggie’s last day at Starfire.  She’s starting at a place in Kansas where she can go live until she’s 90 years old!”  She showed us the website of the place with its “beautiful facilities” where Maggie and 80 other people with disabilities would live and work.  Everything was “on campus, so they never had to leave!”

All of us at Starfire were pretty upset.  Not only were we sad to see Maggie go, but we knew that she was going somewhere that would be completely separate from the rest of the world, and we’re all pretty opposed to that kind of situation.

Her family and friends will all stay here, and her family expects that Maggie will live out the next 70 years or so surrounded by about 80 other people with disabilities and paid staff who will come and go.  Some staff will be terrific.  Some will not.  We can only pray that the ones who are not so terrific are discovered early enough that they cannot harm or neglect her.  But honestly, we all know the chances are good that she will probably not be cared for as well as Kathy cares for Joe or as all of your friends and family care for you.

Her life at the segregated institution in Kansas will be defined by her disability and deficits.  She will not have the chance to develop friendships with people who also love yoga or just like being around her because she’s got a great laugh.  She will not have as many chances for love, friends, meaningful work or anything else that young people without labels get to dream about and achieve.

We as a staff were having a hard time understanding why parents would make a choice like that.  As we worked through it, one of our staff was excited because her neighbors/friends were going into labor with the baby they had been expecting for the past nine months.  The parents had waited to find out if it was a boy or girl.  They wanted to be surprised when the baby was born.

They welcomed ”Denise” into the world…a beautiful little girl with Down syndrome.

Within 24 hours, Denise’s parents were contacted by multiple “social service” agencies offering them assistance for their “special needs” child.  Within 4 days, over 10 different agencies had contacted them with various offers of special services and ways to cope with their “situation.”   Contrast this with Denise’s 2-year-old brother, who has no labels or known disability.  They have never received one single call about him from any agency or social service organization.

You may be thinking to yourself:  “No big deal….they’re just trying to be helpful.”  And you’d be right.

But we agencies and professionals unintentionally labelled Denise on the day she was born:  she is in need of help, charity and special services.  The rest of the children born that day just needed love and a warm home.  This is not to say that Denise won’t need help along the way (she will, as do we all!)  It’s just that from day one, Denise’s parents hear a story about their daughter that is much different from the stories of other children, and I worry that it leads them down the road to Kansas.

We want Denise’s life to be filled with people who share her neighborhood, passions, interests and gifts.  And we want her to live in the places she wants to live, maybe an apartment on the other side of town, and maybe even one day, with a partner or friend who she loves and loves her back.  We don’t want her to be defined by her Down syndrome, where she can only hang out with other people with Down syndrome or other disabilities.  We don’t want her parents to ever have to consider “sending her to Kansas” as an option, because she’ll have such a full life here that it will never cross their minds.

So the future hinges on families and agencies working together to build a life that works in Cincinnati for Denise.  We as professionals have been telling a false story:  Bring us your children, and we, in our infinite wisdom and unmatched talent, will fix everything!  It is tantamount to taking away the power of a family to do what it does best:  Take care of each other.  They do have a responsibility and they do have a voice in making a life together.  We should augment that effort, rather than usurp it.  Otherwise, we’ve got no one but ourselves to blame when parents make decisions to send their children to Kansas.

So Kathy’s post is another step in us working very closely, to discover what happens when families and staff step back and stop being at odds and start listening to each other and respecting what each other has to say and think about the situation.

This of course, is a post related to families and staff collaborating.  I didn’t get into the fact that both of those parties need to focus their energies primarily on listening deeply to what Joe and Maggie and Denise have to say about their own lives.  So please know that their opinions are being considered and respected is assumed here.  Imagine the power of the kind of alliance where people and their families and staff are deeply committed to each other and working together.

For a while, Joe just carried the phone with him.  He wasn’t that interested in using it but felt really cool with it and pulled it out often to push the buttons and see what would happen – plus, of course, to show off  that he had a cell phone.  He did a great job of keeping track of the phone (better, in fact, than his brothers did); and he started remembering to put it in his pocket each morning as he headed off  to school.  The phone had a feature for speed dial.  So I set up his home number, his dad’s cell number, and my cell number behind easy to remember numbers on his phone.  All he had to do was push the 3 to call home, etc.  But there was a bit of a trick to it.  In order to make the cell phone dial the full number, you had to push the 3 and hold it until it began to dial the home number.  Try as we might, Joe just could not learn to hold the number in.  So I let it rest for a while as he continued to take his phone to school and ‘play’ with it.  Then one fine day, he calls the home number from his cell.  Believe it or not, he somehow figured out how to use the cell phone’s address book.  I don’t know if someone at school showed him, or he stumbled across the method on his own – but he somehow learned.  Amazing – right?!! So, I structured the entries in the phone’s address book in a way that he could recognize the names.  He started practicing making phone calls, then actually holding a conversation instead of calling and hanging up, and then learning to make calls to his Granny (who loved the attention).  Now, he easily makes calls to several people from his cell phone and routinely calls me to chat on his boring rides home from StarfireU in his taxi.  He’s still not great at answering the phone – but we are working on that.  Oh, and he also enjoys taking pictures on his phone too, which I also did not teach him!

Anyway, Joe recently decided that he NEEDED a smart phone like the ones he has seen used by staff members at StarfireU.  Joe’s Dad and I balked.  Again, I came across some very intriguing ideas …. I was lucky enough to attend a meeting with staff members from Hamilton County DDS and various representatives from other disability related organizations across the county regarding the Hamilton County DDS Vision 2014 Plan (http://www.hamiltondds.org/Documents/StrategicPlan/2008-2014.pdf) .  The intent of the meeting was to generate outside-the-box/forward-thinking ideas around themes that are important to the futures of people with disabilities.  At the beginning of the meeting, a short film was shown that demonstrated how technology might be utilized in the future to assist adult individuals with disabilities in living on their own, in traveling around their neighborhood,  and in connecting with others.  In the discussions that followed, it became clear to me that technology’s role in the lives of individuals with disabilities has vast potential in the very near future.  Well…. Then…. We can’t have Joe being left out, now can we?!!  So, I decided that he really did NEED that smart phone.  He needs to learn how to utilize technology and to be comfortable with it – how to access the internet – how to utilize social networks – how to use touch sensitive technology – how to operate voice activated utilities – etc. etc.  There are parts of his life right now where technology can assist him.  Joe’s Dad was on board – but the brothers …not so much (I’m sure they will come along though).   Joe got that smart phone.

The phone we got for Joe is an Android because there are so many ‘apps’ out there for just about anything, and more are being developed every day.  We have already found 4 ways to utilize Joe’s phone to assist him in being more independent in his daily life – in addition to the ability to make and receive phone calls, of course.  (1) Learning:  His phone has a voice activated Google interface.  He has already learned to search for just about anything he desires to learn about.  He still doesn’t read in the typical sense; so for now, he gets what he can from the pictures and has learned how to pull up and watch YouTube videos – an excellent mode of ‘reading’ for him. I am amazed at how much Joe can already independently learn on the internet!  (Don’t worry, there are ways to screen what is shown.) And, at some point, I am hoping to find a screen reader app that will read the web page to him.  (2) Planning:  I signed Joe up with an online Google Calendar and tied it to his StarfireU calendar that is updated online regularily by StarfireU staff.  I plan to keep the personal part of the calendar updated for him so everything will sync to his phone and he can bring up his calendar at any time to see what he has scheduled.  He can also show his calendar (on his phone) to anyone who is trying to schedule something with him.  (3)Making Friends:  I am planning to put meaningful pictures on his cell phone so he can bring them up as conversation starters.  See, Joe has a tough time talking about himself when put on the spot, say with a new person.  One of the best ways to grow acquaintances into friends is to share important information about yourself; and I wanted a way to help him do that.  I am thinking that a picture which demonstrates something about him would be a great conversation starter and would help Joe talk about his passions or the various interesting things about him.  (4) Connecting with friends:  Joe already had a Facebook account so we synced it with his phone and now he has mobile Facebook and can keep up with his friends on a minute-by-minute basis (which seems to be a real NEED for the current generation).  We aren’t paying for texting since he can’t read or write.  But, hey, anyone who wants to send him a Facebook message – feel free, one of us will read it to him and type his response for him.

Well, no one can say Joe’s not plugged in now!!  I am sure that as we go along, we will find other uses for this new magical phone. Joe really loves the Navigation / GPS feature.  I, personally, am not so sure how this will help him yet – other than the joy he gets out of using it – which may just be enough of a use all on its own.

Having done this, having jumped in the technology world with both feet; I am optimistic.  I would like to think that Joe and I have begun our journey in earnest my making our first baby steps towards at least 3 of the 5 Valued Experiences ( Sharing Spaces, Growing in Relationships, and Experiencing Respect)!

Is there anyone else out there on a similar journey?  I would love to hear your stories!

Kathy

P.S.   In case you haven’t been exposed to The Five Valued Experiences which lead to a ‘Good Life’ for us all, here’s a link to Starfire’s (http://www.starfirecouncil.org/) interpretation: http://prezi.com/z64anb-c7_rq/path-to-creation-cafe-highlights/. (Give it a few minutes to load.)

I remember Tim returning from the meeting red-faced with anger and frustration.  “Welcome to the party?”  I can’t remember one-hundred percent, but I think Tim said he said in the meeting, “well thanks for inviting us” in that respectful, but seriously disappointed and angered tone that only he could have done with this person.  I remember the “welcome to the party” story often, and it doesn’t make me any less annoyed.

We find ourselves running in circles sometimes with those that set secret standards and then don’t tell others about it.  You can read about Tim’s frustration with Janet Klees when we were in Louisville in 2009 –Some people have collected the wisdom and kept it to themselves.  I’ve had the experience myself a few times, most recently in Savannah.  Tom Kohler offhandedly remarked when we were meeting with him, “you do segregation really well.”  I remained composed, though inevitably blushing I’m sure (as I do whenever I’m stressed/upset/nervous/laughing too much/tired/drinking bourbon/or anytime it’s 3 o’clock for some reason), and talked deeply about people’s capstones, (including Nikki who travelled with us as you’ll recall), internships with a soon-to-be Cincinnati City Council member, hospitals, United Way, a museum, the Girl Scouts (whose headquarters are in Savannah); I briefed him on the hundreds of community partnerships and the like.  He remarked that people in Savannah would love something to do, that there aren’t good options, and that he meant no offense. 

We didn’t get to go deeper due to our company and our unexpected filmmaker in tow, but I felt that deep pang of defensiveness, embarrassment, and anger.  I can recognize the shortfalls of a program as well as the next person.  I know what we do is not ideal, but our world does not operate in the ideal either.  It’s why we’ve asked for help from Tom and others.  It’s a heavy load to carry alone, and thankfully, others have invested time and cups of coffee in us.  We struggled with balancing what we know to be right and true with others who don’t know any better, don’t care to, or aren’t even aware that there’s a problem.

I’m biased, of course, but I like to think we’ve intently avoided becoming one of those people that set the bar high but look down their noses and snub the doings of what others think is good work.  But if we’re honest, we are all those people from time to time. 

We received a Christmas card recently from an agency whose pictures reeked of devaluation.  It came from a place of wanting to share in the Christmas spirit, I’m sure, but instead, it showed dozens of unflattering pictures of grown adults in elf or Santa costumes that all live in the same group home.  Most people in the photo card didn’t smile.  Actually, I don’t remember anyone smiling.  Some looked pissed off.  No one’s names were used.  It was essentially, a card full of anonymous people that could have been anyone angered and saddened by the holiday season, and it could have been a card of people that no one would have wanted to know given the way they all looked.  However, this was a Christmas card with people that Gio, Bridget, Lauren, and Tim, among others, did know.  And this was not a representation of their best selves.  Maybe we could have sent an email to the person making the card with a polite thank you for the Christmas cheer and a by the way did you know this card makes people look awful, scary, sickly, and childish?  Perhaps that’s still possible.  Perhaps it’s what Tom Kohler did for at the coffeeshop for me.  You do segregation well. 

It still stings, but it’s also why we’ve been working so hard.  It’s why we’re trying to understand our language around “members” and “membership” to mean everyone, why we’ve recreated our forms to be universal, why we’re meeting tomorrow to understand why certain staff talk to only people with the label of a disability to get involved, and why others talk to only people who don’t have disabilities.  It’s why capstones have paved the way to understand what our work can be and is about, it’s why a lot of us spend more of our time being curious about other people talking to friends’ girlfriends about being a nurse third shift and how she’d love to teach sometime at Starfire U, inquiring about the men you’ve gotten your haircut next to for the past three years about what they’re passionate about;  it’s why we ask an artist to meet Lawanda over coffee and watch her start to understand what it is we do and why she wants to get involved too, it’s why I was talking to a volunteer for a trap-neuter-return rescue effort for an hour in a bar on a Friday night even though I’m allergic to and sincerely hate cats, it’s why we make that leap and ask to meet up with them later for coffee, or Facebook them with a message “you should meet my friend Ashley and Sarah,” it’s why helping young people explore what they’re good at is so important, and why we’ve got to get more people involved in all of this.  And it’s why people like Tom says what he says or why Jo Krippenstapel keeps meeting with us and nodding with a smile or asking seriously “say more about that” when we’ve gone astray in our thinking.

I was at a meeting a few months ago at Starfire for a local community organization committed to revitalizing Madisonville with a business district, housing and other goodness.  I had offered to host it as I was beginning to get involved in their mission as a Madisonville resident and Starfire’s building is beginning to be seen as a community building, instead of segregated disability place.  The guest for the evening was an expert of community building in Chicago, in town to consult with those heading the project.  (I’ll have to remember to blog about my discomfort and eye-roll reaction with a “community expert” from Chicago coming into Cincinnati to tell us how to be neighborly amd build community, but that’s an aside….)

Joseph helped lead people into the building and give a brief tour to those visiting for the first time.  I gave an intro welcoming them to Starfire citing our usual work: connecting people based on interests and talents, helping others be known for their gifts, community, inclusion, etc.  The expert nodded knowingly and begins to tell the tables of Madisonville residents about his mentally disabled daughter, Betsy and how they looked for a place that would take care of her, and about his son– the lawyer.

I often wonder why people feel the need to do that.  Why introduce their son or daughter (or anyone for that matter) in a way that immediately focuses on something understood by others to be a deficit?  I talked about this at length with Jordan and we joked about the ridiculous, negative, and all true ways his parents could introduce him if that was the standard.  I’ll spare him the examples we came  up with.

You could introduce anyone deficit first.  My chronically lazy daughter.  My useless and distant husband.  My clinically depressed sister.  My financially inept cousins. Oh look!  There’s my infertile best friend, and her husband, the one who was fired last week.  Over there is my brother, you know, the one who dropped out of college and impregnated his now ex-girlfriend. There’s my niece, the one who still owes me $200 and never visits family when she’s in town.  There’s the uncle that was addicted to painkillers… you get the point.  None of the absurd examples tell us anything.   Neither does “my mentally disabled daughter.”  I wonder what Betsy cares about, what she’s interested in?  What’s the funniest joke she’s heard in a while?  What was her 16th birthday like?  What’s her style?  I’m really less interested in the fact she has a disability.  It matters, of course, especially to her and her family, but it doesn’t have to be that which defines her–especially if her brother is “the lawyer” and she’s “mentally disabled.”  Brenda said it best once, and I’ll have to paraphrase,  when someone is 50, they’ll still have a disability, but they’ll also have their inner self, things they care about, things they’re proud of, valuable roles, self-esteem.

There are secret standards, ones we’re still trying to figure out and do better by, and then there are standards that should apply across the board, disability or not.  You don’t introduce your daughter Betsy, to a group of strangers as your “mentally disabled daughter.”  But again, people don’t know, and it’s why Kathy is beginning to think about how we engage people earlier in learning with us, and it’s why Tim and Kathy Wenning are thinking of ways to stitch together the parents and our staff. 

It’s why really, all of us care about this.  “Welcome to the party,” the Christmas card, doing segregation well, Betsy– it’s all related.  It’s pointing to a need of being able to better express what’s important and why we believe it’s important, and not letting the silly stuff that’s less important get in the way of helping all of us grow in friendship, be loveable and loved, have a safe and welcoming home, a supportive family, a vibrant community, and a recognition that we are valuable.

Fleeting, intangible, insignificant in the grand scheme, yet a moment when “great” has the energy to be without end, to live on in us and through the people we touch.  A great moment has the power to create itself, yet can never be recreated.  Rather than garnering the intentions and desires of a human design, a great moment is stripped down, it holds little baggage. It is beyond our scope, it is other-worldly.  And if we are fortunate enough, great moments collect as we age, and as we age we reflect on this ever-growing collection of great moments, a treasure trove of beautiful, life-giving experiences.

No one writes down “great moment” on their calendar, planning for the time when one will happen again…

Moments unfold and great moments emerge.

For people who are not engaged in the community, do not have close friends or family, or lack opportunities to be in valued social roles, great moments can be rare… This holds true for people with the label of disability, who without social integration have been separated from ordinary social opportunities, aka: the stuff that great moments are made of.

John O’Brien puts it like this:

“Many people with developmental disabilities continue to lack connections beyond their relationships with their families and other people in the human service settings they attend. This reflects a history of discrimination against people with developmental disabilities which is expressed in multiple barriers to social integration…(THEREFORE) Social integration is a form of work that people with developmental disabilities and the non-disabled people in their networks, associations, and friendships can only do with each other. It is work in the sense that any relationship is work: people have to reach out to engage others, act in ways that satisfy each other’s expectations, and maintain trust with one another,” (O’Brien, “Perspectives On ‘Most Integrated’ Services for People with Developmental Disabilities”).

Last week, in front of a crowded bar, a group of friends announced their brain-child: the Cincy Story Mural. This project was formed out of a relationship built between Starfire U member Krista and Aaron of DIY Printing, and has since grown to include Public Allies of Cincinnati, Cincy.com, and a group of dedicated artists and photographers willing to see the project through. It was a great moment for two great friends.

“All these people came, which is kind of a feather in Krista’s hat,” said Dan, Krista’s father. “She’s involved with these organizations that I didn’t even know existed. And they all treat her as an equal, which is really nice.”

The ties being built are in the ordinary, public places outside of Krista’s family life and away from the Starfire building. These relationships prove that barriers to social integration are only stepping stones toward shared positive experiences: “which give rise to an appreciation of what there is to enjoy in a person’s company and what the person can contribute to our common life,” (John O’Brien, “Most Integrated”).

“KBs keeping me busy we’re doing awesome work together we are looking forward to doing these mural projects,” said Aaron of DIY Printing. “Without KB, I wouldn’t be smiling this big, she’s got my heart.”

“Aaron is my good friend. He’s on my side,” added Krista.

Stay tuned to the   www.cincystorymural.org  website or go to Facebook  for updates on the project !!

I’ve gotten pretty good at being “weird” over the past couple of years. Emailing perfect strangers to have coffee with me, meet me in their neighborhood, and come in for a tour, or the good, “I’d like to tell you about what we’re doing” without really identifying who “we” are and what “what” is. And, it’s been wonderful and not at all creepy. In fact, most people are flattered and excited to be singled out, asking to meet over coffee. (On a side note, I did get turned down once by a woman doing a personal experiment. She wanted to see how “certifiably friendly” Cincinnati was. I offered to meet up in a public place and talk about Cincinnati and she declined saying that it wouldn’t be safe. But that’s another story—but come on, I wasn’t asking her to get in my van to help find my lost kitten…)

“You want to talk to me about things I already care about?” is usually the puzzling question, I sometimes get. The answer, “yes.”

“You mean, you want me to come in and teach a class about what I already love to do?”

“Yes.”

“You want me to share information about an issue that’s important to me?”

“Yes.”

Sure, it’s a strange thing to think about. Meeting people for the sake of getting to know them, with the hopes of helping them meet people who like the stuff they do. But it’s lovely, wonderful, mind boggling, frustrating, connect-the-dots, kind of work. I wasn’t always okay with the idea of just talking to people. In fact, sitting and talking were two of my least favorite things to do as a child. My grandmother would sit in IGA’s parking lot (now Fresh Market on Madison Road) with her van window rolled down talking. We’d go there for provisions, ground beef, milk, eggs, noodles, cheese, coffee creamer, and stay there for hours on end.

Having already finished with grocery shopping, she’d inevitably run into someone she knew—and there we’d be- stranded with the van turned off in a parking lot as she talked. (Or on the off chance she knew the car passing us on the street; she’d stop, put the hazard lights on, put the van in park, windows rolled down). I like to think that my grandmother knew all of these people well. I don’t know that for sure. If she didn’t, you certainly couldn’t tell by the way she’d talk—talk while the milk got warm, and the frozen meats started thawing. At the time it was embarrassing. It was annoying, and it was really hot in the un-air-conditioned jalopy of van; alternatively, it was below freezing in a van whose heat had been turned off as we sat in park in a cold parking lot in January. How much longer? I’d think, and I’d throw myself into the seat—laying down now as she talked, or drawing on the windows with my breath–a form of entertainment I’d inevitably be yelled at for later. After awhile and when I just couldn’t take it anymore, I’d muster up the courage and tap her on the shoulder. “Grandmaaaa….” I’d whisper with more than a hint of impatience in my voice, “Can we go now?” She was crafty, never letting on that she’d heard you. So crafty, that’d you’d begin to doubt that you’d even said anything at all.

Oh, she was good. A few more throwing myself against the seats, a dozen or so more loud drawn out sighs, and she’d turn the key in the ignition, and a cloud of blue smoke with rise up from the exhaust. The sound, and toxic smell of freedom. But the talking, gossiping, did you knows, would continue. The funny thing is, as much as my grandmother talked, she equally complained and fussed right up until someone came to the window. “Oh, what the hell does she want? Hurry, hurry, get in the van.” You’d think we were hurrying away from parking lot used car salesmen the way she’d slid the sliding van door closed and skittered into the front seat. But of course, when someone familiar face would call out “Margaret!” she’d pause, roll down the window, put in her teeth, and there we’d sit, milk getting warmer, meats defrosting. It’s wonderful to think that all my time being trapped in the van surrounded by IGA bags was training for me to be as chatty, inquisitive, and prepared for random conversation as I am today. That in sitting through probably hundreds of parking lot meetings, my grandmother was in fact training me for the work I do today.