I feel like this has taken forever to complete the recap of the Summer Institute…but it gave us a lot to think about.  I think I pared each post about 50%, so you got off easy.

On the 5th day, we wrapped up the morning session with KFI and then headed to the auditorium where Tom Kohler was offering the  closing keynote.  He told the story of Waddie Welcome, albeit an abridged version due to the time constraints.

We gathered again after his keynote, shared sandwiches, and talked about how to bring some of the things we learned back with us. 

I really cannot sum up adequately everything I feel about the experience, but I noticed that Tom wrote this on his blog on the last day of the conference.  I don’t purport to know what he was thinking when he wrote it.  He could have been talking on a personal level, or on a broader level, but the words are beautiful and spoke to me:

What We Do…June 25th, 2010 By Tom Kohler

• What we do is not flashy.

• What we do is not “solving a community problem” unless you consider indifference to injustice in another person’s life a community problem.

• What we do is based on possibility, not prescription.

• What we do is as strong as people, and as weak as people.

• What we do demands and deepens character.

• What we do is both humble and audacious.

• What we do can speak to people of good heart who have little else in common.

• What we do is to do this as best we can, which is different than the best it can be done. We aspire, given our limitations as individual people, as a group of people and as an organization to do this the best it can be done.

• What we do fans the flame of personalism rather than professionalism.

• What we do is part of the very current and hip DIY movement.

• What we do has roots in each of the major faith stories of the world.

• What we do ties back to the underground railroad, the sheltering of Jews, to other movements and individual acts of courage that focus on saving individual people from harm at the hands of a power structure.

I think that is all the summation necessary.  Thank you to Hope for making it possible, and all at Realizations.  Thanks to John and Diana and Brady and Robert and ALN for the model, wisdom and solidarity. Thanks to Tom and Janet and Gail and Jim and Milt for the patience, guidance and challenges.  And thanks to all who traveled in the Starfire circle for the example and strength.

Last night, the Reds celebrated the 20th anniversary of their 1990 World Series.  M.C. Hammer is in town along with the Nasty Boys and Chris Sabo.  But I haven’t heard much about the architect – Marge Schott. 

Say what you will about Marge, but she brought us a World Series and no one can deny her love for the Reds.  At the beginning of the 1990 season, the Reds won their first 9 games.  I went with some friends to see them play the Braves in game #10.  It was a Sunday afternoon and they were giving out team photos.  The Reds lost, but we got to meet Marge and she autographed our pictures, complete with Schottzie’s paw print.  So now I’ve got a “To Tim” autograph from Marge on the World Series team photo hanging in the room at Starfire that her foundation sponsored.  

So as we celebrate the Wire-To-Wire team from 1990, let’s not forget the woman who made it possible! 

On to a few quick links you may be interested in:

• Citybeat has a great article previewing an Antonio Adams show at Thunder-Sky, Inc.  Terrific thoughts on the problems with labels by Keith Banner and an excellent job by the writer, who asks why it’s necessary to even discuss disability in the context of art.   

• A new Political Action Committee focused on Disability Power and Pride….I wonder if they’ll get involved in Kentucky’s U.S. Senate race?

• A story out of Columbus (with Michael Rench quotes!) about the difficulties of people with autism in finding jobs.  As my friend Diana would say, it’s all about relationships!!!

• A new study out of Britain says that people with disabilities are the group most discriminated against in society. 

• Speaking of Cleveland, an employee of Anthony Wayne Services was arrested for stealing thousands of dollars from the people he was supposed to be supporting. 

• I’m sorry, but does a “special needs subdivision” really sound like a good idea to anyone?  If it works, maybe we could then just have a whole city, just for people with disabilities.  Perhaps their own state?  Anyone with me?  Anyone?

After lunch on Day 3, I was signed up for Tom Kohler’s course on “Invitation.”  Tom is with Chatham-Savannah Citizen Advocacy, and wrote the book Waddie Welcome & The Beloved Community.

If you ever get the opportunity to hear Tom tell the story of Waddie Welcome, jump on it.  Bridget and I saw him speak back in November of 09 when Hope brought him into town, and it’s powerful.  Tom has this great soulful voice….the cadence and rhythm are the perfect delivery for Mr. Welcome’s story.  Part of it is his Georgia drawl, but mostly, it’s just his way.  He’s also a maestro in conversation.  I heard Tom talk to a few different people the week of the conference and he has a way of talking to people that gets to the heart of them in minutes.

So after reading about my crush on Tom Kohler, you’re probably going to be surprised to hear that I ditched his class for the rest of the week.  I guess “ditched” is the wrong word.  More like “dropped,” though that doesn’t sound much better.  You see, my runner-up choice to Tom’s course was with an organization in Maine called KFI.  I checked out their website before the conference and was struck by the milestones on their “About” page:

(KFI 15 years ago)

Preschool Only For Children With Disabilities
Segregated Special Purpose School
Sheltered Workshop
Segregated Day Program
Foster Homes or Living With Family
Everyone Transported To One Location
Agency Owned and Operated Vans
Services Provided In KFI Owned Buildings
Groups, GROUPS, GROUPS

(KFI Today)

Fully Integrated Preschool For Children With and Without Disabilities
Public School Education
Individual Job Placement In Real Jobs
Support Individuals To Use Community Resources
Support Individuals In Their Own Apartments or Homes
Services In The Individual’s Community
Public Transportation Or Staff’s Personal Vehicle
Services In The Community; Nothing Done Within Space Owned by KFI
Individuals, INDIVIDUALS, INDIVIDUALS

It is a simple table, but it impressed me:  “Now here are some people who’ve done it,” I thought.  Imagine the work they’ve put in transforming KFI from a sheltered workshop to what it is today!  Plus, there were about 7 other people from Starfire, including Candice, attending Tom’s course, so I figured we were in good hands there.  Gail and Jim from KFI are some pretty cool people.  Listening to their stories, you can tell that they’ve got a ton of practical experience doing this work.   They’re aware of the pitfalls and the rewards, and they care a lot about what they do.  It was wonderful spending time with them and learning about their work over the past 30 years, and it gave me a sense of horizon for my own work.  Bonus:  I got to spend time with Milton Tyree, who was in the same course.  Milt is an expert in helping people find jobs and has written a manual on positive introductions.  Just a great guy all around.

So I was happy with my decision to learn from KFI instead of Tom, but angry at science, who have yet to figure out a decent way to clone yourself despite millions of dollars and decades of work.  Gail and Jim gave me a ton of concrete ways to keep moving forward.

At the end of the day, Whitney Kays and I offered up something a little different to the marketplace.  We told everyone about our friend, SRV, who has a ton of gifts to share with the world.  But she is sometimes misunderstood and might seem scary to people.  So therefore, she finds herself a little lonely these days.  We asked if anyone would like to participate in a PATH for our friend and ended up with about 10 people!  It was really fun.  We all talked about how we met SRV,  the highlight of which was when Tom Kohler said he knew SRV’s mother, Normalization, and Whitney corrected him that she likes to be referred to as “Norma.”  We discussed that we’d like for her to have more friends, we talked about her protective father (Wolfensberger) and all her cousins (the theories that contribute to SRV and have spring from it).  We discussed her bright future and our highest hopes for her (that she would influence everyone in the community:  funders, workers, families, etc.) and we talked about her need to update her wardrobe a little bit for 2010 (some people felt like she was stuck in the 70’s).  All in all, it was a fun exercise and really stretched us. 

After that, we had a terrific dance.  Seriously, I’ve been to a lot of dances and this was one of the best.  There’s photographic evidence out there that I think will be used to blackmail me in the future.  I think everyone was in the mood to cut loose…and boy, did we ever! 

The night ended with a game of Catch Phrase and beers in the hotel lobby.  I was struck by how much Catch Phrase is a grown up version of Hot Potato… 

Hi All. I am really excited about contributing to this blog, so I want to introduce myself. My name is Jenny. You can find my personal blog here (just a small plug!  )

I’ve gotten to know many people with disabilities in the past three years, and it’s been eye opening and a pleasure. When I first started working where I do, it was really intimidating walking into a room of people with disabilities, but after a few months, it became no big deal because I saw that they are just people. Like everyone else, with the same goals and desires.

Anyway, enough about me.

You may have read this post by Tim. I had the pleasure of meeting with some folks at Starfire a few weeks ago to talk about David because I was writing a remembrance article about him. We met right before David’s memorial service, so he was fresh on everyone’s mind.

(I must admit, I was a bit nervous writing a remembrance piece because I’d never met him, but mostly because he seemed so joyful I was afraid I wouldn’t be able to personify that in my article. But again, enough about me.)

Here’s the piece:

It was impossible to feel bad when David Johnson was around. He was known at Starfire U as the king of compliments.
“Once, David gave the ultimate compliment,” said Tim Vogt, Starfire Executive Director, “He and our receptionist would always try to one-up each other. One morning, David said ‘You look nice today as usual and in the future.’ How can you top that?”

David started attending the Starfire U day program two years ago.

“He pretty much owned the place as soon as he walked in,” said Tim.

With a huge, constant smile, David was interested in everyone he met and the first to volunteer for anything. David asked new friends about their families, pets, jobs.

A member of Starfire’s ambassador program, David was known for wearing a Spongebob tie when speaking to kids, and for loving to share his favorite gummy candy.

David was also a big music fan. His favorite singer was Miley Cyrus, and he was known around Starfire to dance and sing in front of everyone.

In May, David passed away at age 21. He will be remembered fondly for demonstrating love, acceptance, and starting each day with a smile.

Now and again my two sisters and I engage in a raucously filled night of making up fake memories from our shared childhood. I might say, “hey, you guys remember the time I broke both my knee caps rollerblading?” Or Raven or Jenny might say, “oh yeah, like the time you and mom were boxing in the living room and that’s how you lost your front teeth?” The three of us will cackle until Mom yells from another room, “Why do you lie?! That never happened!” flustered at our inane and false stories of our lives together, she returns us to reality.

I have been mulling over this idea of “story keeper” or “memory keeper” and the role of motherhood for the past few months. It stemmed from a conversation with my partner’s mother. His mother, Judy, and her seven brothers and sisters are in the midst of an unfortunate losing battle. An oft-told tale of elderly parents and rapidly fading memories. What started as frustration, “Mom, we just told you when Leah was coming home next!” grew into a desperate realization of defeat: her memory, her life, their life as she remembered for them, was slowly being worn away by time.

I was forwarded an article written by David Pitonyak, entitled “Who Holds Your Story?” He writes, “Having our stories held and told by others gives us a sense of place in the world, a sense of belonging.” The entire piece is moving, depressing, hopeful, and cathartic.

Judy teared up recently in the car and asked Jordan and myself rhetorically, “who am I if my mother doesn’t remember me?” There was a silence—and extended pause of pain. Jordan answered, “well, you’re you of course.” But we got the point. When the person who holds your memories, your life, forgets— what then is left but that unspeakable sadness and guilty anger?

David’s writings remind me of many who I’ve encountered who cringe at revisiting the past. This work we live has a shameful, and dark history. “Let’s look toward the future!” “We’ve moved on, thank God!” “What good will come of reliving those days?” I can’t help but think of the countless and forgotten names who lived that shameful history. Judy’s words, her aching question is painfully valid and eerily haunting. “Who am I if my mother doesn’t remember me?” In this work, who are those we’ve forgotten, if we don’t remember? Pitonyak writes about case files, ““professionals do everything they can to make sure it is textbook sterile: “Delivery normal. Child failed to reach developmental milestones. Problem behaviors began to emerge in special education classroom at the age of 7. Mother and father no longer able to care for child. Child institutionalized at age of 14. Mother visited every Sunday afternoon until she passed away in 1977.”” (Pitonyak pp. 2) The story ends there, in the file. Rarely a picture is found, no letters from old loves, no Christmas cards from Auntie, no old yearbooks, no dried flowers from old Proms, or wedding, no newspaper clipping noting honors, graduations, births.

Sandy, Debbie, Judy, 1970.
When my grandmother passed away we found boxes of drawings, first hair cut clippings, school photos, spring concert programs, letters, birthday cards, parish bulletins, all documenting my mothers and her four sister lives, my life and my two sisters’ lives, all my cousins, all of my relatives lives compiled in stacks of yellowed paper and bent photographs. It took us months (literally) to sort through everything. No paper, no picture was unimportant to her. To her, it all had to be remembered.

Starfire U juniors recently wrote their own biographies. I am proud to say that none of them read as case files. Here is a sneak peak:

“Navigator. Metro Expert . Tour Guide, just ask Joseph how to get to anywhere in Cincinnati …” and my favorite quote from Joseph, “I hope my future will be as joyful as it right now.”

“On September 19, 1986 at 11:03 p.m. marked the beginning of something special. That was the day that Nikki was born and where all of her struggles and triumphs started….”

This is a just snapshot, of course. But the point is, their stories are known. Their history, their lives preserved, their future made evident, in their own words. Living documents of who they are. I am grateful to know their stories, be in their lives, and relieved to know that it is not my duty alone to remember it.

I struggle often thinking that sometimes this work we do sets us up to poorly eulogize those we are supposed to be serving, while they are still living and breathing. In Louisville, someone talked about the separation and segregation of language between us “professionals” and “those other people.” “He’s a screamer, biter, eloper, hitter, inappropriate at times, prone to outbursts, needs redirection.” WHEW! I’m sure, if you asked my mother, my own memory keeper, she could describe me in a similar way, “She’s neurotic, sarcastic, cynical, confrontational, selfish, annoying, easily offended, nail biter.” And for gosh sake, don’t we all “need redirection”?! However, she wouldn’t describe me in that way, no—no one would describe those we care about with all the negative secrets first. Why then, do we do so in our work? As those who document in baselines, incident reports, daily logs, MyPlans, IEPs, paperwork galore—let’s preserve the memories as we’d like our own story to read: dignified and humanely. Let’s “reclaim the person’s story” as Pitonyak asks.

On Wednesday, February 20, 2008, we got about six inches of snow.  I remember because I had to get Bridget to the hospital for her scheduled c-section by 7:00 a.m.  Little Paddy was on the way!  He was born around 9:15 that morning and spent the day in an oxygen tent, due to his lungs not being quite ready.  Around 10:30 a.m., I glanced at my phone and noticed I had three missed calls.  They were all from Mike.

I met Mike at a summer camp in 1998.  Over the next 13 years, we’ve hung out, gone to wrestling matches and baseball games, talked on the phone and crashed each other’s parties, graduations and family functions.  On that snowy day, Mike was the only person not in our family who called to check and see how we were doing:  Was the baby here?  Was Bridget OK?  Did we make it through the snow?  All of these questions were waiting on my voicemail.  No other calls from other high school or college friends.  I think I sent out a text message announcement and received few texts in response.

When I called Mike and told him the news, he screamed and dropped the phone cheering.  I know that I was in a pretty fragile state, with Patrick under the ventilator and Bridget still recovering, but I got pretty choked up listening to how excited Mike was.  When we hung up, it was clear to me that Mike was, and still is my best friend.  We’ve argued, celebrated, mourned, and worked together over the last decade, and I can’t imagine my life without him.

A friend sent me this article in last week’s Times about friendship.  The author analyzes our relationships in the modern world.  It’s a love story for friendship, and at one point, the author states:

“Friendships worthy of the name are different. Their rhythm lies not in what they bring to us, but rather in what we immerse ourselves in. To be a friend is to step into the stream of another’s life. It is, while not neglecting my own life, to take pleasure in another’s pleasure, and to share their pain as partly my own. The borders of my life, while not entirely erased, become less clear than they might be.”

I can’t tell you how much it hurts me to hear Mike tell me stories about how people at his work or at his high school called him retarded.  I cannot imagine a friend of mine being put down like that every day of his life.  But when I hear those stories, it reminds me that Mike is a young man living with a disability in an extremely un-inclusive world, not just my friend.  Our lives are woven together and will be for the rest of our lives.  I know that no matter where Mike goes, I will be in touch with him once or twice a week.  We’re linked together.

So what about the relationships between the voluntary members and paid staff of Starfire?  Are those friendships?  Well, no, not all of them.  Just as elsewhere in life, at Starfire there are people you click with and people you don’t. 

This article was timely because of the questions posed by Janet Klees in Louisville about friendships between people with a label of disability and the people supporting them (check my recap of that conversation at the end of this post.)

I purposefully didn’t put our group answers to the third question we discussed on Day 3 of the Summer Institute:  What do we know that others outside of Starfire might not know?  One of our answers to that question is that people with disabilities and people without, even in a paid relationship, can indeed form deep and caring friendships.  We all know that at Starfire because we’ve all got them.  Some of them take years to recognize, as my friendship with Mike took me, but that’s one of my jobs:  to help the people I work with recognize that beautiful possibility more quickly than I and to leave themselves open to it.  It’s not required, but it’s allowed, and it’s beautiful to see when it happens. 

I’ve got another friend who spent a week with Starfire last week and is now interviewing our staff and members, asking them what Starfire has that feels so different…and how we got it.  We’re not sure exactly, but I think it has something to do with friendship.  We pay people to be excellent in their work:  to maximize choice, to minimize exclusion, to find new ways.  We don’t pay them to be friends, but it happens nonetheless.  All of us accept who we are, with our potentials and limitations, and we challenge each other every single day.

Tomorrow night, Bridget and I are going out with some old and dear friends.  Three of them have significant physical disabilities.  When we meet at the BW3’s in Western Hills tomorrow night, there will be three of us that got paid to help the other three eat, swim, change clothes and get around a long time ago.  But we haven’t done that work in 11 years, and no one will know that any of us were once paid to do that work.  Tomorrow night, we’ll be six friends catching up after not seeing each other for a few months.  Three of us will help three others eat and get around.  We’ll have some wings and beers and tell old stories on each other, and at some point, we’ll talk about Bobbi Jo, our lucky 7th, whose funeral three years ago was the last time we were all in the same room.  We’ve all stayed in touch in different ways and frequencies since then, but it felt like a good time to get everyone together again.  And as difficult as it’s been to coordinate our schedules and get everyone there, it will be a damn good time and well worth the trouble.  Our friendship is impossible to some, and insincere to others. 

But we know what they don’t.

When last we left them, our Starfire heroes were in the throes of agony, drowning their sorrows in a vat of Bourbon Barrel Ale from the Bluegrass Brewing Company…..

(OK, so maybe that’s an exaggeration, but I get some degree of artistic license, right?)

On Day 3 of the Summer Institute, we had our final session with Janet Klees.  She saved the best for last and talked about some cool things that I get excited about as well:  connecting people in the community with the people she supports.

This is one of my new favorite things to do.  Locally, Joe Erpenbeck and his team at Hamilton County ABCD are the ones doing this work, and they’ve got some great stories. 

It’s so simple:  Look at the common gifts, assets and interests of people and connect them.  I have a friend Joe, who loves nature and being outside.  He’s tried to raise a family of snakes, he’s been known to stop along the side of the road and pick duckweed if he’s forgotten his lunch, and he’s just an all-around outdoors-y fellow.  Last week, Joe was at UC, taking a week’s worth of classes, one of which happened to be botanical in nature.  I was visiting the class and asked one of the instructors where she got all of her plants for the class.  She explained that her father owned and operated a greenhouse up on Rt. 747, which is in Springdale.  I immediately called Joe over and introduced him to Mary.  Joe lives in Springdale, and his biggest challenge is getting around.  I told Mary what a geek Joe was for flora and she got all excited and told him about her dad’s greenhouse.  Then I told them how close they were to each other and watched them chat away. 

Now the challenge is to help nurture that connection.  This is the part we’re working on currently at Starfire.  It’s so new to us and there are lots of subtleties inherent.

We’ll write more on that in the future, but back to the Institute…

After the morning session, Janet came up to me and we had a terrific conversation.  She said she was interested in Starfire’s work and told me that we were “clearly very creative, talented and enthusiastic.”  In fact, she said we were one of the best segregated programs she’d seen…Youch!  But she also said that we had a chance to be one of the best, if we got more intentional in our work…I’ll take it!

After the afternoon session, we entered the “marketplace,” which is where anyone could stand up and talk about things they’d like to discuss.  Hope said she’d like to do an SRV overview, and I decided to go with her.  One other Starfire person came along with me, and within one hour, Hope had laid out the basics of SRV in a very honest but accessible way.  She prefaced it with the caveat that in no way should we take her one-hour PowerPoint as the be-all end-all of SRV, but her presentation convinced me that there is a more accessible way to train everyone in the basics of SRV.

I’ll relay a specific story to illustrate the point:

One woman in Janet’s course was completely anti-SRV after her last session on Wednesday.  She said SRV felt like another example of professionals making decisions for people with disabilities – “If my son wants to play Hot Potato, he should be able to play Hot Potato!”  Her son also moved out of her house and into a group home for the first time about two weeks prior to this conference, so Janet’s very strong opposition to group homes didn’t help her much.  Another example of unfortunate timing for Janet.  I asked her to go with me to hear Hope’s presentation for a different spin.  She agreed, but I could tell that we were in danger of losing her.

After Hope’s hourlong presentation on SRV, this mother told me how wonderful SRV was and wanted to know how we could help the people at her son’s group home to adopt it as one of their guiding philosophies!  What a change, huh?  And I sighed with relief…this was the SRV I was hoping would catch on with our group!  This is the power of doing the right work in helping people experience and gain valued roles and expand their expectations of themselves and the others’ expectations of them.

So, as I mentioned in a previous post, I have a few issues with how SRV is presented.  And this stems from my personal experience:  When I was  trained at my first part-time job in this field in 1997, I was taught how to put people in a restraining hold.  Non-Violent Crisis Intervention, it was called, and I’m proud to say that I’ve never used the techniques or even considered it.  13 years later, I first heard of Social Role Valorization.  So why was it that I was taught how to physically restrain someone who was having “behavior problems” right away, but not taught SRV (or even made aware of it!) until 2010?  Why is this not the first thing you’re taught when you get hired on everywhere that supports people with the label of disabilities? 

What if you were a jeweler, and your job was to take rough diamonds straight from the earth and set them in rings and necklaces?  But instead of learning about cut, color and clarity, you only learned techniques of molding the gold/silver around the stone.  No matter how skilled you get at setting the stone in that ring/necklace, you’re still not anywhere near releasing that stone’s true beauty because you never learned to bring out the light in the corners or how the imperfections can be minimized or incorporated into the cut so as to enhance the value.  You’d be a terrible jeweler, right?  But no jeweler skips that learning.  In fact, it’s the very base of jewlery!  It’s step #1.

That is my question:  Can SRV be step #1???  I’m no expert, as I’ve only recently learned about this, but I see two areas of potential:

1. Let’s start in the shallow end before we try to brave the deep waters:  What if everyone got a quick half-day training on SRV the first day they arrived?  What if parents and families and people that are supported themselves were taught the basic principles of SRV as part of some “Intro” course offered in every community?  Sure, we wouldn’t get into the various (and important) underlying theories, but we would have a basis on which to build and raise awareness.  Then, as you were more interested or as you grew in your work, you could learn more deeply, including a five-day PASSING or some similar intensive training.  Currently, it seems that trainings are almost always a multi-day event (one PASSING offered here is 5 days in Pennsylvania).  So getting to one is going to cost the fee of attendance, the meals and accommodations, travel to and from, as well as the time away from work.  It ends up being rather expensive…maybe $1,000 or more per person!  That’s a big chunk of a training budget and probably completely cost-prohibitive for families.  That being said, I originally intended to send a few staff (Bridget being one, so I knew I’d hear it from her) to my SRV training in Columbus, and not attend myself.  I was encouraged to go by a friend.  He said that it was important that I, as a leader with power to effect change and make decisions, should make it a point to attend.  I did so and agree with him completely.  All leaders of organizations or efforts like this should carve out the time and money to attend this, as it will require your conviction to help implement it.  But what about the other 30 employees of Starfire?  What about the 500 families of Starfire?  What about the 200 community volunteers?  How do we get that message to them?  Can you imagine the power of all of those people being aware of and advocating for the principles of SRV and helping us implement its beautiful principles here?  Can we get an intro course down to four hours so as to bring that closer to possibility?  What if we included funders in that training?  What if SRV approaches became the “new normal” by which systems operated and on which families expectations and funding decisions were based?

2. Remember what your grandmother told you…You’ll catch more flies with honey than vinegar!  I first learned SRV principles from Jo Masserelli and she was a wonderful teacher.  She had great examples and kept it informal with lots of opportunities for questions.  We would ask her “What about’s” and she would walk us through the thought process of how that would be looked at in an SRV framework:  Is using the term “respite” a problem?  What about volunteering at an animal shelter?  What about when people say “you must be a saint” to do this work or parent a child with a disability?  She worked through all of these questions (and the good news was that it was only two days, instead of five days!  But she did tell us that we should consider doing the longer trainings.)  Others I’ve seen or read have detached from anything that isn’t purely SRV.  They don’t have much patience for the messiness of the present.  So I think an understanding and accepting teacher in this arena is critical, or you’re going to turn off more people than you turn on.  So aside from cloning Hope Dittmeier, how do we help people who teach and know SRV spread the gospel in a positive way?   Can it be part of the training to think from a honey-perspective, gently nudging or coaxing change out of your friends or co-workers instead of vinegar, offending people left and right over things they may have deeply invested themselves in that don’t meld with a pure SRV approach?  I’ve not done a PASSING yet, but as I understand it, a critical part of it is to evaluate another place or agency.  I wonder if that technique might build in a “go forth and criticize” expectation upon completion of the training.  In our session with Janet, all of us had no problem tearing apart Patrick Henry Hughes’ father, who called him “buddy” and patted him on the head a few times during his performance.  But the real challenge is to turn the mirror on ourselves, and that’s difficult.  We need friends and allies for support when we do that.  We need people to remind us there is time aplenty and that small changes can reap big rewards.  Otherwise, (take it from me!) the task can seem incredibly daunting and people may just check out.  

In the end, I just think there’s a better way to share the wonderful challenge of SRV.  I know that one of the basics of SRV is that the problem lies in our systems and how they’re designed to go against everything SRV stands for.  But if even a cursory introduction is offered to people as they begin their journey in the systems or community in general, they’ll be better prepared to recognize and challenge the issues.  There are lots of things that I would have done differently, had I been aware of the “color, cut and clarity” needed in my work over the past 13 years.

We ended Day 3 of the Summer Institute by hijacking a conference room at the hotel and ordering pizza.  There’s a picture floating around out there of me with a case of Bud Light, some wine and a six-pack of Smirnoff Ice (yuck, Diana!) which we added to a bottle of bourbon as we digested the first half of our week.  I asked everyone to gather into small groups of three to four people and consider these four questions:

We may as well keep on our theme of “The genius of Tom Kohler”…

When I first heard Tom speak, someone in the audience asked him what we should be doing in the future.  He answered something along these lines (I’m paraphrasing):  “The 60’s, 70’s, 80’s and 90’s were the era of rights…Civil Rights, disability rights, women’s rights, gay rights, etc.  This time that we live in now should be the era of doing right.  Our democracy is a vertical democracy, where we look up for our solutions.  We should be creating a horizontal democracy, where we look to each other for the answers to our problems.” 

I thought that was so incisive.  Our leaders, who by all accounts are mostly intelligent, reasonably competent, and fairly well-educated, are completely impotent in many ways at solving our problems.  Politicians, CEO’s, and the like don’t have the answers for the oil spill and other environmental issues.  They can’t prevent or cure economic despair.  They can’t fix the injustices that people on the margins of society suffer.  But we can do all of that.

We can vote both at the ballot box and the cash register how we want this world to work.  And we can care about each other enough to raise our children to be good citizens and take care of our neighborhoods.  We don’t need our salvation to come from on high.  It’s all around us.

I recently re-connected with an old friend and she was telling me about her work in the past as a lobbyist in the pharmaceutical industry (Talk about your double whammies!  I backed away, in case of lightning.  She assured me that she’s out of the biz, though, so we were safe.)  As we caught up, I mentioned Tom’s vision for the present and future to her and we talked about how her work as a lobbyist felt like the vertical democracy.  I said something dismissive about that vertical world and my desire to get as far away from it as possible.   

Then my friend whipped out a geometrical comparison.  She said she didn’t see the vertical democracies and horizontal democracies as separate or antithetical to each other.  She saw them as a perpendicular.  Then she said that she saw power in advocating to our elected officials for social issues, while working to build and support the associations that build communities.  She said we should try to become the hypotenuse!

I didn’t have much to say after that, and it’s stuck with me since.  Do I know anyone who can navigate the vertical and horizontal democracies?  I would say Al Etmanski is a great example of a hypotenuse.   He does the work, brings people together in innovative ways, and advocates at the highest levels of Canadian government for positive change and helpful policies.  Do you know others?

(By the way, can you tell that I’m a sucker for metaphors?  Even mathematical ones!)

Last year, I wrote about a cool project we launched in collaboration with the Mayerson Student Philanthropy Project. 

I should have kept you up to date on it, because thanks to the efforts of Candice and Steve Elliott and Roger Grein and a bunch of wonderful teachers and young people dedicated to service, this has blossomed into an amazing effort.  Basically, from the initial discussions, a few of the people in their second year at Starfire U teamed up with some people from Moeller here in Cincinnati and worked on giving out $1,000.  So young people with and without disabilities were working together to analyze proposals from local non-profits and making a decision as to where the funds went.  What a neat way to include people living with disabilities in philanthropy and provide a collaborative experience, huh?  They met many times, got to know each other and got to work.

Out of that partnership grew another very cool collaboration.  Each year, Steve recruits a bunch of teachers and students and they spend a week doing service.  This year, he invited the people entering their third year at Starfire U to join them.  So every day this week, young people with and without disabilities have volunteered all over Cincinnati….together!

I spoke with some of them last night, as they celebrated with pizza and pop at a building on UC’s campus and the place was alive with energy.  They have really gotten to know each other and Steve has some incredible stories of the learning and common experiences they’ve all gotten to share.  They talked about working at a camp for homeless children, a Senior Center, Stop AIDS, a day care, and about 10 other places in small, inclusive groups all over the city. 

I wanted to make sure to post this this morning because they’re working on a surprise project that takes place on Fountain Square today at 12:30.  If you’re downtown already, take your lunch to the square.  You won’t regret it.  It’s a beautiful way to celebrate the culmination of a group of young people who are showing us a picture of a more inclusive and peaceful future.

UPDATE 4:30

Here’s the video to the flash mob they all did today on Fountain Square…This is great, but being there to see it in person in its totality was moving: Click

UPDATE 7/8/10: 

Another version of the video: Click

Ol’ Timbo meant to write at the end of each day of the Summer Institute in Louisville last week, but as you can see, that didn’t happen.  Still, I definitely wanted to write some thoughts on the week.  I’ve gotten tons of invitations to various conferences over the years, but few seem worth the regsitration fee.  This was definitely worth every penny, and then some.  Hope deserves a lot of credit for getting this together and it gave all of us at Starfire a lot to think about.

On the second day, we were all seriously challenged by Janet Klees.  As I mentioned, Janet helps run Deohaeko in Toronto.  Basically, it’s a co-op of seven families who built a place for their sons and daughters to live.  It’s really interesting because instead of building a home or apartment complex just for them, the families built one with an additional 95  or so units, so there’s lots of people without disabilities that live there, and they help build the social community.  A terrific model of natural inclusion and individualized supported living.

Janet started the morning by talking about a “segregated” place in Toronto called the “Sunshine Club,” where people with disabilities could go out, attend dances, etc…..Sound familiar?  She said that the families of Deohaeko were welcome to use their services (and that of Special Olympics), but that she and Deohaeko would not help get them there or support them there.  She framed it as part of her belief system to have nothing to do with places like that.

This is where the principles of Social Role Valorization start to get challenging.  Basically, a tenant of SRV is that if people with disabilities are grouped in any way, they are in danger of being judged as only being able to live/work/be friends with other people with disabilities.  The thinking is that “congregating” people with disabilities creates an “us/them” separation, which perpetuates the isolation of people who live with a disability.  So you can imagine that this is a tough pill to swallow.  Indeed, SRV raises your awareness about nearly everything you’ve ever done.  But “anti-congregation”, in my opinion, is the hardest to digest because it basically goes against every single program, service, and approach in our field.  It’s also the biggest hurdle to overcome because most services are based upon congregation to some degree.  It’s an unfortunate historical reality that basically comes from the old institutions and it’s difficult to break that mentality.  I’ll need to get into this in a future post, but for now, just know that that your first time hearing this is like a dagger to the heart, and you get a glimpse of the immense challenges ahead, which can seem overwhelming. 

Also keep in mind that out of the 16 people in Janet’s presentation, 9 of them were from Starfire.  And out of those 9, SRV was a new concept to all but me.

So our minds were blown.

I did raise my hand after Janet described the “Sunshine Club” and told her that it sounded a lot like Starfire and that we understand the challenges of “moving forward in our work” which was “why we’re here.”  That’s the truth.  We’re not perfect, and we know we can do a better job.  So we show up to places like the Summer Institute to learn new ways.  (When I was first made aware of the principles of SRV, I was stunned.  It really does blow your mind, if you’ve spent any amount of time in this work.  A friend who knew how much I was struggling with this gave me this article by John O’Brien.  Every once in a while, as the case was when Janet brought up her criticisms of the “Sunshine Club,” I re-visit this.  John O’Brien is my new hero and this article is like my blankie…my happy place, if you will.  He understands the great challenges and opportunities of our work, and, most importantly, the slow process it takes to turn around an aircraft carrier.  I treasure that article.)

This is one of my criticisms (I have a couple, the other of which is that the concepts are too inaccessible, but we need to save that for another time) of some of the practitioners of Social Role Valorization:  I’ve found more than a few who, once they come down from the mountain, have little to no patience for the rest of us philistines.  As O’Brien states, it’s typical to walk the “path of detachment” from traditional methods once one discovers SRV, but he doesn’t mention the “path of criticism” or “the path of impatience with others.”  I’ve found that people who walk those paths typically turn more people off than on to SRV.  Now here’s the crappy part:  I have felt that tendancy in myself and understand the dilemma of people who have “seen the light,” so to speak:  How do you make change without criticizing the status quo, thereby alienating the very people who could be most valuable in bringing about the change you seek?  How do you remain silent when you see things that you know are misguided, however unintentionally?  As new as all this is to me, I’ve decided to take two approaches to this:

1. Meet people where they are, not where you want them to be.  I heard this from Fr. Eric Knapp, pastor of St. Xavier church.  He was talking about raising the awareness of Social Justice issues within our parish community.  I know it’s probably a tried and true axiom, but it was the first time I’d heard it so simply put, and it reminded me of people like Jo Krippenstapel, John Romer, Hope Dittmeier, and others who have taken my hand and helped me understand things like SRV.  They’ve been supportive and challenging at the same time…the best kind of teacher you could ask for.   

2. Bring some friends along for the ride.  No one can do this work by themselves, and as I mentioned, SRV is an incredibly dense and challenging set of principles.  I’m still in the beginning stages of learning it myself.  That was one of the reasons for bringing 18 people from Starfire to the Summer Institute, to bring them along so they can be part of Starfire’s “path of creation.”  These people are strong enough to hear this and smart enough to put it into action, so they’re crucial to the future of Starfire, and the movement at large.  We need them desperately on this journey. 

I think Janet probably missed out on #1.  After she criticized the “Sunshine Club,” I caught 8 distinct and obvious winces from our Starfire people.  Keep in mind that she, for some reason, decided to talk about the “Sunshine Club” first thing in the morning session.  Also keep in mind that her Day 1 session was all about Deohaeko and nothing about SRV.  So the first thing they all experienced that morning was defensiveness of Starfire, before they even learned anything about SRV.   I was worried that she had turned them off before they even got started, and my suspicions were confirmed at the lunch break.  Everyone was incredibly upset and most needed to talk to me right away:  “What did you think of the Sunshine Club?”….”Is this really where you think Starfire needs to go?”….”What on earth is she talking about?”  And those were the most professional questions!  It started to get off track quickly, as the conversation turned to people looking at Janet and her organization and trying to find SRV-ish chinks in her armor.  I knew it was bad when I had people from other sessions coming up to me and asking me what had happened that had everyone so upset.  Our beautiful week of reflection and learning was slipping away.

I wish I could say that the afternoon session was better, but it wasn’t.  Janet presented a very important and legitmate concept, but one that cut the Starfire contingent deeply.    Janet said that people who are paid to be in the lives of people with disabilities are not their friends.  She had some reasons for saying that:  (A) If we introduce ourselves as “friends,” others might think that role is already filled in the person’s life, and (B) by placing ourselves in that role, we won’t be as tuned in to helping the person find other friends.  We become the endpoint (a friend) rather than the conduit (to other friends).  I get (B) way more than I get (A), so that was important to hear.  But everyone heard it as “You can’t be friends with the members of Starfire, and if you think you have a friendship now with one of them, you’re wrong.”

Yikes!  So that night, everyone chose to go off-campus for dinner, and most chose to eat at a brewery.  

We needed a beer. 

I know that I’m writing these recaps a week after the conference, but hopefully, after reading this, you can understand why.  It was an intense experience.  I’ll write about the rest of the week soon, but rest assured knowing that I’ll be decribing how Janet was mostly the victim of poor timing and is interested in Starfire’s potential, Hope Dittmeier rescued SRV from the abyss, Tom Kohler is everyone’s hero, and the rest of week was immensely better than the day I’ve just recounted.

We’ve wrapped up our second day at the 2010 Summer Institute on Community.  Whew!  what a whirlwind.  It’s being presented and hosted by Realizations, which his headed up by Hope Dittmeier, who is a helluva director.  Last night, at the end of our first day, Hope and I and a few others sat up thinking and drinking and she said she felt like she’d been here 3 days already.  Well it feels like 5 now!  A quick recap of Day One:

Arrived Monday and checked in.  It’s on the grounds of the Louisville Seminary, which is absolutely the perfect place for any conference. ever. 

It’s just gorgeous and the grounds and buildings surprise you in every way and make the experience all the better.  We started with a welcome from Hope and a keynote from Peter Leidy.  Peter’s a pretty funny guy and entertained us with some songs, but he was to be outdone a little later, as you’ll see.  He discussed the differences between compliance and curiosity, both as roles as givers and receivers of services.  There is some irony to this, which I’ll touch on for Day 2.

After Peter’s keynote, we moved into our first courses.  I was signed up for “Social Role Valorization Around the Kitchen Table” with Janet Klees of Legacies and the Deohaeko Support Network in Toronto.  Janet’s got a pretty cool thing going up there and told us all about Deohaeko.  We really didn’t get into SRV much in that first session…more just learning about Deohaeko, which was a fine place to start.

The highlight of Day 1, for me, was after dinner, when we were entertained by Patrick Henry Hughes. 

Patrick played about 10 songs and spoke about his life and just capped off a terrific first day.  I broke open the bourbon and a few of us toasted our arrival and learning.  I was up with friends (new and old) until nearly 2 a.m.  It was exhausting, but terrific.  Day 2 recap coming soon!

18 of us from Starfire are heading down to the 2010 Summer Institute on Community in Louisville tomorrow morning.  It’ll be a weeklong conference of learning about new ways to include our brothers and sisters with disabilities.  I’m going to try and post each day on our discoveries and learnings.  Personally, I’ll be spending time in courses led by Tom Kohler and Janet Klees.  Can’t wait!

Candice wrote a beautiful post on choice/work the other day.  Make sure to check it out.

Her last line was powerful:  “allow them to choose with, not be chosen for.”

This is the sentiment that underlies all of our best values:  Self-determination,

independence, empowerment, and personal choice to name a few.

A few months ago, Candice, Bridget and a few of us were introduced to the concepts of

Social Role Valorization, which has been championed by Wolf Wolfensberger, among

others.  It was a powerful experience for me, and I will never look at my life and work

the same way.  That’s a good thing.  We’ll have to get into Dr. Wolf and how he and his

theories have been marginalized (after all, they strike at the heart of the status quo) at a

later date.  But for now, I’d like to talk about one particular concept presented through a

discussion of SRV:  The Perpetual Child.

It’s pretty simple, really:  part of SRV is simply PR for people with a label of disability. 

 How are they viewed by others?  

 In turn, how does that view translate to our society’s values?

 Finally, how does that value encourage (or in most cases, discourage) inclusion

in life, love, work, homes, etc? 

So in the case of the perpetual child, we would ask:  How are people with disabilities

portrayed as children trapped in the body of adults?  Are they given coloring pages at

restaurants?  Do they carry around stuffed animals?  Do they participate in juvenile

games as a regular part of their day (as opposed to the occasional silliness we all try to

incorporate in our lives once in a while)?

The week after we returned from the SRV conference, Starfire was hosting a birthday

party for everyone who had a birthday that month.  I watched the party unfold with a

new SRV-colored filter.  Everyone arrived and seemed excited, meeting new people and

talking with friends, and then the festivities started.  I cringed as I watched 20 adults

with disabilities play Hot Potato with a group of volunteers from a local high school. 

They played pin the tail on the donkey and bean bag toss, and then went on to have cake

and open gift bags where everyone got a brightly colored pencil and notebook, and a

crazy straw.  It was literally a scene from a birthday party I had just attended a few

months prior…the difference was that that party was for a group of four and five year-

olds.

The next day, we started discussing how we could offer more grown-up birthday

parties.  Some people didn’t think it was a problem, and that we were making too big a

deal of it.  Others thought birthday parties in general were for children, so we’d never be

able to offer one for adults.  We ended up deciding that we still offer the birthday

parties, but we’d split them up so that they were smaller groups (4-5 instead of 20) and

would do things that were more like what adults do for their birthdays:  go to dinner,

volunteer somewhere, snacks n’ board games or attend a show of some sort. 

After we made the change, I had a staff challenge me and ask me why I was limiting the

choices we offered.  I explained SRV briefly and told her how important it is to help our

members avoid the image of the perpetual child.

“Oh yeah!” she said, “I get that.  When we go out to dinner, if someone asks for a beer,

the waiter always looks at me and asks me if it’s OK.  I tell him ‘Of course!  They’re

adults!'”  She seemed pretty indignant that the waiter would commit this egregious

offense of treating an adult with a disability like a child.

I asked her “And where on Earth would that waiter get the idea that adults with

disabilities should be treated like children?”

A look of “a-ha” dawned upon her face and she said:  “Because he volunteered at a

Starfire birthday party in high school and we played hot potato.”

Exactly.

Personal choice is important.  But it can be used (just like “independence”) to relieve

supporters of people with disabilities of the responsibility to help them think about the

long-term impact of their decisions, both on them individually and the future

generations of people with disabilities coming after them.  It’s a cop-out.  It becomes an

excuse to not have to think and work harder to find a new way:  “Well they enjoy playing

hot potato.”  Didn’t we all?  But eventually, we had to trade hot potato for more grown-

up forms of interactions.

I definitely think people with disabilities can enjoy childish pleasures, just as many

adults do!  My brothers both get all geeked up about comic books and toys, and they’re

in their late 20’s.  But they are a policeman/husband/homeowner and a

zookeeper/boyfriend/homeowner (in addition to being giant nerds!), so they’ve got

status to spare.  And there are lots of adults who enjoy comic books and toys.  So far,

Google has been fruitless in finding me any references to an adult “Hot Potato” club.   

If a member of Starfire really wants to play hot potato, though, and it’s their

passion, then let’s find a group of adults that also love hot potato, and start the first

“Adult Hot Potato Championship.”

Until that happens, we’re going to have to work harder and think deeper to find a new

way.

I had a pretty interesting meeting a few weeks ago with Dave Hammis

(http://www.griffinhammis.com/) and Tim in Middletown talking about work, and

what works in the world of work.  Since then, I’ve been pondering the idea of a “sense of

place.”  I’ll admit, Middletown invoked part of the question I am chewing on, mainly

because what Tim and I drove past for the most part were abandoned strip malls, realty

signs, and empty buildings.  I don’t pretend to be a history expert on Middletown, but I

do think this “place” has seen better days. How then, does a city in decline recapture the

“sense of place?”  I don’t know, but I think the answer begins will reconnecting the

community to the people.  Perhaps a conversation at another time.

The bigger question I am struggling with is how people find their “place” both in the

sense of physical location, and in the idea of what one is “supposed to be.”  I cease from

using quotation marks around place and supposed to be from here on out!

Let’s start at the beginning.  (by the way, check out this song while you read this! I think

it’s appropriate given the topic)

MP3: Atlas Sound: “Walkabout (w_ Noah Lennox)” )

For many of us what we’re supposed to be is directly linked to expectations and

commitments we made for ourselves, expectations placed upon us from our parents,

encouragement from a close group of friends, supportive teachers.  For me, I was

supposed to be a teacher.  I studied Theology at Xavier University, enjoyed the theories

and the philosophical arguments, loved the thick and muddled readings from history. 

Yes, this was supposed to be my future.  My career, my dream job, if you will.  Three

months into teaching at a Catholic high school, I realized I was obviously wrong.  I did

not enjoy the school setting with its imposed limitations, requirements, red tape and

bureaucratic structure.  The curious exploration I enjoyed from reading and studying

was squashed to 50 minute periods of lesson plans, curriculum, and grading.  Wait, I

thought!  This isn’t what I’m supposed to be doing!  Is it?  Where’s the intellectual

dialogue?  Where’s the debate?  Where’s the internal churning of ideas?

What then was I supposed to be doing?  I read in a C.S. Lewis book a line that I think

applies here.  He said, “Friendship is born at that moment when one person says to

another: “What! You too? I thought I was the only one.”  How relieved I was to hear a

friend say recently that he was formerly a lawyer.  You too?!   Now, David is the Director

and founder of Prairie (http://www.prairiecincinnati.com ) a non-profit photography

studio in Northside that is committed to community based art and collaboration.  It’s

strange how finding your “sense of place” sometimes comes from failing (in my case) or

from fruitful longing (in David’s).

What we are “supposed” to be doing isn’t necessarily linked to what we planned on

doing.  And believe me, I am a planner.  I enjoy to do-lists and calendars like nobody’s

business.  I get excited when Outlook reminds me of an upcoming meeting.  I use post-it

notes religiously, and feel satisfied when I can cross off an item.  However, there are

some things we don’t plan for, things we aren’t supposed to be, but wind up doing.  For

people like David, and myself who’ve felt a longing for something other than what you’ve

been doing.   For me, it was as simple as discovering I really hated being in front of the

classroom, “pouring” my knowledge into the minds of students as Freire would put it. 

No, certainly that wasn’t my place.  I didn’t ask David what it was for him to make the

jump from law to photography.

What then about people with disabilities?  Much of my success and failures come from

being able to choose for myself.  Dave Hammis, I was encouraged to hear, echoed this. 

He said, we should all be “choosing with, not choosing for someone.”  Yes.  In doing so,

he continued, there’s a discovery that needs to take place.  In the world of people with

disabilities, often this happens through staff, supports, essentially through paid help

who choose what they’re “supposed to be doing.”  Dave hit the nail on the head when he

said (with regards to navigating the discovery with someone), “I don’t really know who

you are, and I need to remember that.”  Let’s all remember this when working with

everyone.  In order to find our place we need to admit, we don’t really know ourselves

half as well as we’d like, and consequently, we don’t know others as much as we’d like,

either.

As I continue to discover what I am “supposed to be doing” I like to stay open to the vast

array of interesting possibilities.  Let’s keep the door open, and a seat at the table for

people with disabilities, too, and allow them to choose with, not be chosen for.

Today ranks in the top 10 days of my life.

Today, we said goodbye to David Johnson.  I met David nearly two years ago when he

entered his first year of Starfire U.  David was a wizard with people and over the past

two years, I had the pleasure of watching him work his magic on a daily basis.  I told him

more than once how great he was at giving compliments.  It was impossible not to get a

big head around David.  Everyone “looked nice” and felt great when he was around.  For

the past two weeks, since we learned of his passing, I’ve definitely felt the void he left. 

Today, we spent time remembering, grieving and celebrating together.  Some of us cried

and told stories of loss, some of us laughed about funny things he would do or say,

others mustered up the courage to say goodbye to our dear friend, and all of us leaned

on each other all day.   I love this picture of him and sent it out to some of his friends

when he died.  I love it because of his smile and because it’s in the Starfire U Commons,

which he was so happy about and proud of.  This was taken at the Grand Opening of the

space in April, and if you were there, you remember David because he was the host and

tour guide for everyone. 

Today, I love this picture for a different reason:  David was a Mormon, and as we prayed

and listened to his friends and family tell stories at his church, I was reminded that

Mormons pray with their arms folded, just like David is doing here.  I know that David is

praying for all of us now and doing just what he did in his time with us:  making sure

everyone’s alright, sharing his spirit with us as we navigate our days, and helping us love

each other a little more than we did yesterday.

About a year ago, I was introduced to the PATH process by Jo Krippenstapel.  I had

really never heard much about the Person Centered Planning world, and Jo set me

straight over coffee and all kinds of books, pictures and articles.  At first, I got it

confused with Ohio’s PATHS training, an equally important effort that Scott Osterfeld

and some other friends are involved in.

Once I sorted out exactly what PATH was, though, I was in love.

I don’t know what PATH stands for, but I know that talking about people’s futures, and

especially discussing what’s positive and possible in our lives, is incredibly

powerful…and fun!  We decided to experiment a bit, and each of us at Starfire did a very

brief PATH on ourselves in small groups last August.  Everyone loved it, and I credit my

PATH for kicking my butt and making me finish the work on the house so we could have

the Derby party this year.

After dipping our toe in the PATH pool, we decided to jump right in.  With Jo’s help, we

were able to do a PATH for each person entering their 3rd year of Starfire U.  We had a

ton of great volunteer facilitators and graphic recorders (headed up by the wonderful

Dawn Freudenberg!) from Hamilton County Developmental Disability Services and

ended up completing about 20 PATHs!

I sat in on the PATH for two of my friends, and I got to talk to all the families as they

left.  They all raved about how wonderful this process felt to them.  They came in

expecting an IEP meeting or some other baloney, and they left feeling energized and

excited about the potential the future holds.  AND…..The people who the PATH was for

have started doing incredible things!  One man is now coaching a swim team.  Another

guy started riding the bus on his own for the first time..and has since done it more. 

Literally everyone involved in the PATHs we hosted has been changed in a positive way

by the process. 

I think that’s primarily a result of the power of PATH’s North Star and “Positive and

Possible” discussions.  Both are refreshing changes from SWOT analyses and

other approaches that focus on problems to be solved.  A PATH, by contrast is about

futures full of possibilities based on present gifts and assets. 

As you can see in the pic above, the process is very visual – lots of drawings and

pictures.  In fact, notice that even though Juan’s PATH is in Spanish, we can still tell

that he loves basketball, wants to fly/travel, make some money, enjoys music and wants

his friends and family to be a part of his future!  I was a little skeptical at first (I

remember thinking “What is this hippy stuff?  Can’t we just write it out, put it in a Word

doc, and email it to everyone?”)  But the visual component helps everyone think

differently…more creatively. 

Don’t take my word for it, though.  These people taped their feelings on their PATH

experience.

Something cool that we’re working on:  A new version of PATH (and its cousin MAPS) is

out, and we’re trying to bring Jack Pearpoint, John O’Brien, and Lynda Kahn to

Cincinnati in the Spring of 2011 to train us on it.  Will keep you updated!

In 2007, we were exploring the concept of Starfire U, and part of that research included

a conference in Columbus on post-secondary education opportunities for people with

disabilities.  Bridget and I went up there excited to learn about all the possibilities out

there.  Little did we know that we would have everything we’d known about ourselves,

our work and our calling challenged.

Instead of spending the ride back talking about how to build on what was out there or

invent new ways, we were speechless thanks to one little phrase mentioned by one of the

speakers ( Candee Basford ):

“disability industrial complex.”

You’ll need some history to understand the term, but basically, Ike warned us that if war

makes people money, then people have a vested interest in making war.  (And while

you’re researching, you might as well get John McKnight’s The Careless Society off of

Amazon or from the library).  So following the analogy, without people with disabilities,

lots of people don’t have jobs, yours truly included.  

So, do we have a vested interest in sustaining dependence upon our service

systems?  Let’s say I run a work skills program.  Let’s say I am charging the State

$50/person/day to teach people how to work.  The day they walk through my doors, it’s

better for my business if they never progress.  That way, they’ll always need more work,

more practice, and I’m there to provide it.  I’d say that in that case, I have a vested

interest in keeping people unemployable.

The real question, I think, is if the disability industrial complex is the work of cynical

profiteers or well-intentioned, but oblivious people.  I’m hoping it’s like 99% the latter,

but admit to not knowing.

Personally, I can tell you two things:

1.  Candee Basford will forever scare the crap out of me.

2.  I’m so thankful to her for opening my eyes. 

The only answer, I think, is to be aware of the pitfalls so you can work to avoid them. 

For example, because of this one phrase, Starfire U is capped at four years.  Instead of

having a vested interest in people’s lack of development, our success is tied to theirs, and

there is not an infinite horizon for our work. 

So thank you, Candee.  Even though we’ll never meet because I will hide in fear if I ever

cross your path again, you opened my eyes to a new way of looking at myself and my

work.

One last note on The Careless Society:  One of John McKnight’s great illustrators of his

point is the “grief counselor.”  In the good ol’ days, when someone died, neighbors and

family were there to take care of them and help them work through it, bringing them

dinner (most likely the ever-popular funeral staple:  lasagna) and helping them out. 

When the “grief counselors” entered the scene, the neighbors and family withdrew,

feeling under-trained and inadequate for the job.  The grief counselor gets paid and jets

when the allotted sessions are up, leaving the mourners alone without that previously

rich network of support.

I get that. 

But what about people who live with disabilities?  When were their good ol’ days?

I read this post by Al Etmanski.  Al heads up Plan of Canada, which focuses on building natural networks of relationships around people.

In it, he talks about natural care and discusses the myths of indiviualism, independence and self-reliance. 

I’ve been thinking a lot about this recently because many involved in the lives of people with disabilities hold “independence” up as some sort of endgame solution.  Now, don’t get me wrong:  being as independent as possible is a great thing to strive for.  It’s even in Starfire’s mission statement, so that should tell you that I’m onboard with the big “I.” 

And we all hold up our independence as a shining virtue.  Indeed it is one of the founding principles of our country!  But are we really “independent?”

When I think about the people in my life that I rely on – Bridget, my parents, my friends, my co-workers, my mentors, and on and on and on –  When I think about those people, I start to realize that not only am I waaaaayyyy less “independent” than I ever imagined…I’m completely dependent on them. 

I like to think about “interdependence” instead.  We are all interdependent on each other to some degree.  We are connected:  I rely on my neighbors to keep the loud partying to a minimum at night,  I rely on my wife to love me and put up with my weird habits, and we all rely on Kevin Bacon to relate us to each other.

I really disliked blogspot, and a friend recommended WordPress.  So far, so good.  I’m going to link the old posts so we’ve got everything in one place!