Thank You, Mark Zuckerberg

Lauren sent me Mark Zuckerberg’s IPO letter and said it was wonderful.  Neither of us being techy-nerds, I read it out of curiousity.  What was so wonderfully written by the man who had rolled out “Timeline,” a feature that has 18 year old me, embarrasing 26 year old me since everything ever posted, tagged, captured is all there to see in all its immature college-aged glory sorted by year, and month, and timestamped?

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/

Go Big or Go Home

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.

mysteriousness 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.

Imagining the Emery

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.

You Just Can’t Keep a Good Man Down!

My son, Joe, is a people person – just ask anyone who knows him.  What I really mean is:  he is a passionate people person – not like most of us.  Most of us like people well enough, especially family and friends.  And we engage with those people readily. But when it comes to mere acquaintances or strangers, we are a lot more guarded.  For some unexplained reason, we feel a need to keep the real ‘us’ hidden.  So we wrap ourselves in a protective veil of polite but detached anonymity.  We don’t try – or even care – to get to know the other person – just like Anne in Kathleen’s story.  We may not even realize that we are telling each other, “You are not important to me.”   We want to blend in, to be one of the crowd, to not stand out, to show that we have nothing to offer and want nothing in return. We don’t want to share anything personal about ourselves. Only when we slowly get to know someone, do we begin to trust enough to begin sharing little bits of ourselves.  So, in lines at grocery stores or at ticket booths or in any number of queuing opportunities, we ignore each other.  We stare into space or look at inanimate objects – anything to avoid eye contact or any type of interchange with others around us.  We put on the don’t-talk-to-me look.  In waiting rooms at doctor’s offices we grab a magazine or a cell phone to avoid human interactions.  In groups of people at gatherings we stand around engaged in meaningless small talk – polite and distant.  Some of us connect with others more readily than this.  But for a lot of us, we steel ourselves against some unknown threat.  We are uninterested in meaningful conversations as we rush thru our day.

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!

Communion

Every morning around 6:15, I get an email sent to my phone.  It’s a quote from Jean Vanier, founder of L’Arche communities and a pretty awesome person.

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.

A Chance Meeting, What Does She Do? (by guest contributor Kathleen Cail)

(In September of 2011, I had a call from someone named Kathleen Cail.  She told me about her efforts to bring the Positive Exposures exhibit to the Cincinnati Museum Center and she wanted to plan a community conversation around it.  I had no idea that by accepting her invitation to meet, chat, and plan together, I’d be collaborating with such an amazing citizen and mother.  Over a few cups of coffee, I’ve learned the depth of Kathleen’s commitment to inclusion and building a more positive Cincinnati for her daughter, Grace, and the rest of us.  Thanks, Kathleen, for bringing more beauty to our city and for these thoughtful reflections on the potential for even more beauty in our everyday experiences.)

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.

Kansastrophe

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.

The Magic Phone

Joe just got a new cell phone for his birthday.  Just so you know: in Joe’s opinion, this is the best gift he has ever gotten in his whole life and he is obsessed with it.  Now, this is not the first cell phone Joe has had.  We got him his first cell phone when Joe was in his fifth year of high school (about 4 years ago at the age of 20).  At the time, Joe barely ever talked on a phone and when requested to do so, he would only say a few short things and then would abruptly end the call.  He could not dial a given number on a house phone without a lot of help.  He could only ‘read’ things like “Wendy’s”, “McDonald’s”, ”Wal-Mart”: words that had a distinctive shape or had symbols with them (and were usually heavily marketed on TV).  He had no idea how to operate a cell phone and we weren’t even sure he could keep track of one.  Like Joe’s brothers, you may be asking, ‘So why did you even get the phone for him?’.  Well, like a lot of things I do regarding Joe, I sorta stumble upon ideas. You see, ‘every’ typical high school student at Sycamore High had a cell phone.  And, as I noticed on a visit to the special ed classroom, many of the students who had disabilities, also had cell phones.  So it dawned on me that my Joe was getting left out and I determined that this was one of those times I could do something about it.  So we bought Joe a cell phone (very simple, cheap, with barely any services) as a status symbol, for one reason.  And for a second- more practical reason, for safety.  It occurred to me that Joe really needed to learn how to make (and become comfortable with making) a phone call so that in the case of an emergency (if he got lost or heaven knows what else might happen) he would be capable of calling me.  Also, at the time, Joe was very unreliable as far as his ability to produce personal information such as a home phone number.  If he had a cell phone with him, at least someone else could help him call home. Besides, we paid for cell phones for Joe’s two ‘typical’ brothers.  Were their needs that different from Joe’s?  It was a small price to pay for Joe to be COOL and safe.

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.)