Correlation

“At the end of the day, it’s all about relationships.”

Written by Jim Price, CEO/President of Empower MediaMarketing and Starfire’s current Board President

I always seem to find correlations between what I do for fun, for good and at work.  If you aren’t living the way you work or working the way you live I don’t believe you can fully experience the treasures of life in a seamless and transparent way.  Back in 2005, when I began to get more heavily involved with Starfire, I was also leading a mission at work to create a new word of mouth marketing (WOMM) team and capability at our marketing agency.

Word of mouth is the original form of marketing that has since come back into prominence.  WOMM was born out of a need; passing information from one person to another was the only way to advertise pre-mass media and was instrumental in spreading religion, underground movements and even urban-legends.  Today WOMM has been fueled by technology (people connecting with people more often online) bringing the oldest form of marketing back to sometimes the tent pole marketing strategy of campaigns.

It was paramount we get in this business and have the capability.  As we got started we all agreed that our point of view on WOMM for clients would be to turn one-time engagements into long-term relationships and loyalty.  At the end of the day, it’s all about relationships and we wanted to help clients build those with their consumers over time online and offline.  We also believed the way to do it was for us to provide the reasons and means to get influential people to talk and refer our clients products.  Six years later, we’ve been successful.

What I did in my professional life has now come full-circle in my personal life.  Through my work with Starfire and participating in evolving their mission and vision, there’s no question there’s a correlation.  It’s time for the world of disabilities to transition to a world of inclusion where we turn the one-time engagements (outings, volunteer events, the occasional hello etc.) into long-term relationships and loyalty.  We need to create a world with people who care about them to come together to build their personal social networks.  Through conversationsconnections and collaborations at the same places we hang out at every single day, we can provide the reasons and means to get all of us who can be influential people in their lives to talk with them to build their networks one genuine conversation at a time.

Do you agree? If so, let’s do this together and tell me how you can help.

timothyvogt
We should all know... We're all in this together

The story below was shared by well over 18 thousand people in just the 2 hours I noticed it posted on Facebook. It’s been circulating around the web as far as I can tell since May this year. Whether it is true, or just beautifully written, there is something about it that has people all over passing it along, keeping it alive.  You have to wonder, what is it about this story that makes people want to share it again and again?

It’s entitled: “A sweet lesson on patience.”

A NYC Cab Driver writes…

I arrived at the address and honked the horn. After waiting a few minutes I honked again. Since this was going to be my last ride of my shift I thought about just driving away, but instead I put the car in park and walked up to the door and knocked.. ‘Just a minute’, answered a frail, elderly voice. I could hear something being dragged across the floor.

After a long pause, the door opened. A small woman in her 90′s stood before me. She was wearing a print dress and a pillbox hat with a veil pinned on it, like somebody out of a 1940′s movie.

By her side was a small nylon suitcase. The apartment looked as if no one had lived in it for years. All the furniture was covered with sheets.

There were no clocks on the walls, no knickknacks or utensils on the counters. In the corner was a cardboard
box filled with photos and glassware.

‘Would you carry my bag out to the car?’ she said. I took the suitcase to the cab, then returned to assist the woman.

She took my arm and we walked slowly toward the curb.

She kept thanking me for my kindness. ‘It’s nothing’, I told her.. ‘I just try to treat my passengers the way I would want my mother to be treated.’

‘Oh, you’re such a good boy, she said. When we got in the cab, she gave me an address and then asked, ‘Could you drive
through downtown?’

‘It’s not the shortest way,’ I answered quickly..

‘Oh, I don’t mind,’ she said. ‘I’m in no hurry. I’m on my way to a hospice.

I looked in the rear-view mirror. Her eyes were glistening. ‘I don’t have any family left,’ she continued in a soft voice..’The doctor says I don’t have very long.’ I quietly reached over and shut off the meter.

‘What route would you like me to take?’ I asked.

For the next two hours, we drove through the city. She showed me the building where she had once worked as an elevator operator.

We drove through the neighborhood where she and her husband had lived when they were newlyweds She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl.

Sometimes she’d ask me to slow in front of a particular building or corner and would sit staring into the darkness, saying nothing.

As the first hint of sun was creasing the horizon, she suddenly said, ‘I’m tired.Let’s go now’.
We drove in silence to the address she had given me. It was a low building, like a small convalescent home, with a driveway that passed under a portico.

Two orderlies came out to the cab as soon as we pulled up. They were solicitous and intent, watching her every move.
They must have been expecting her.

I opened the trunk and took the small suitcase to the door. The woman was already seated in a wheelchair.

‘How much do I owe you?’ She asked, reaching into her purse.

‘Nothing,’ I said

‘You have to make a living,’ she answered.

‘There are other passengers,’ I responded.

Almost without thinking, I bent and gave her a hug.She held onto me tightly.

‘You gave an old woman a little moment of joy,’ she said. ‘Thank you.’

I squeezed her hand, and then walked into the dim morning light.. Behind me, a door shut.It was the sound of the closing of a life..

I didn’t pick up any more passengers that shift. I drove aimlessly lost in thought. For the rest of that day,I could hardly talk.What if that woman had gotten an angry driver,or one who was impatient to end his shift? What if I had refused to take the run, or had honked once, then driven away?

On a quick review, I don’t think that I have done anything more important in my life.

We’re conditioned to think that our lives revolve around great moments.

But great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

How does a story like this get circulated again and again, by thousands upon thousands of people across the globe?

Taxi drivers, let’s think, typically have a list of job duties that looks like this (borrowed from eHow.com)

  • Pick up or meet customers according to requests, appointments, or schedules

  • Collect fares or vouchers from passengers

  • Determine fares based on trip distances and times, using taximeters and fee schedules

  • Vacuum and clean interiors, and wash and polish exteriors of automobiles

  • Operate vans with special equipment, such as lifts

  • Perform minor vehicle repairs such as cleaning spark plugs, or take vehicles to mechanics for servicing.

Nowhere does it say, “make the most out of the many encounters with strangers you will meet.”

And that’s just it. The “job duties” assigned to a cab driver, only speak to a fraction of the what it actually means to be a cab driver. This story breathes life into every bullet point on paper that has ever attempted to define us. It says that if we make it, just driving a stranger from point A to point B could be the start of a great adventure. That each day could be ripe with the potential of a new bond, a compelling story, a big hug at the end of a long drive. It says when we turn off the meter, when we respond to one another, when we don’t take each other for granted, we are simply able to acknowledge the fact that we are all in this messy life together, and able to do a little something more for the people around us.  Maybe we keep on sharing the story as a reminder to be good, to be patient, and to be open to people.

timothyvogt
3 Monsters

Conan O’Brien in 2010 hosted his last “Tonight Show” on NBC.  In his remarks to the audience he said, “All I ask is one thing, particularly of young people.  Please do not be cynical.  I hate cynicism; for the record it’s my least favorite quality.  It doesn’t lead anywhere.  Nobody in life gets exactly what they thought they were going to get.  But if you work really hard and you’re kind, amazing things will happen.  I’m telling you, amazing things will happen.”

Those words have stuck with me, particularly because I agree with him about it being an unflattering quality, and partly because I’ve worked so hard to keep that quality in check with in myself.

What is the opposite of cynicism?  Surely, it’s not blind optimism.  I listened to President Obama speak last night and he touched on his 2008 campaign slogan “hope” and what it meant in the context of 2012.  I tried to recall his exact words from then, and needed to Google as a refresher.  I think it fits in this conversation: “Hope is not blind optimism.  It’s not ignoring the enormity of the task ahead or the roadblocks that stand in our path.  It’s not sitting on the sidelines or shirking from a fight.  Hope is that thing inside us that insists, despite all evidence to the contrary, that something better awaits us if we have the courage to reach for it, and to work for it, and to fight for it.  Hope is the belief that destiny will not be written for us, but by us, by the men and women who are not content to settle for the world as it is, who have the courage to remake the world as it should be.”

We hope plenty.  We hope at night, sleeplessly.  We hope on drives home, tearfully.  We hope on the way to coffee meet-ups with strangers we think could be the future best friend of someone we know, or at least come in and teach a class about something they enjoy.  We hope via text message, in person, and through staff meetings.  We hope people aren’t alone.  We hope people are happy.  We hope what we’ve worked on is something, enough, knowing it’s never enough.  We hope all the damn time.

And what is this hoping?  Do we sit back and cross our fingers behind our backs while we think good thoughts?  Do we superstitiously avoid cracks in sidewalks together, holding hands and skipping?  Do we cross the street when we see black cats, avoid walking under ladders, curse ourselves for breaking mirrors?  For us, hope is the uncomfortable teetering between what we know could be, what we know to be right, what we know to be possible and what we know Others expect will happen.

Tim and I exchanged an email stream back and forth in 2011 about this very thing, the role of the Others. “There’s another kind of cynicism…those people who say ‘welcome back to reality.’  It’s a hopeless sentiment and is a momentum-killer.  The only way to overcome that is to A) ignore it and B) build up enough allies that them saying it doesn’t matter anyway.”  The Others, I can surmise, speak ill of what we’re doing.  Cynics, of course, are often spineless.  The ‘Welcome Back to Reality’ phrase is an effort to save face, a last ditch ‘I told you so’, salt poured into a wound we tear open daily.  Often, the cynics aren’t actively working to change the situation, but have opinions and criticism and suggestions plenty.

We know that we do, what we’ve worked on, what has and hasn’t sustained is not perfect.  While imperfect as what we do may be, as flawed as connections and capstones can turn out, it is a step in the right direction, a direction that isn’t the same as everything else that is out there that keeps people exactly where they’ve always been.  I suppose a cynic can layered, as one-dimensional as they often seem.  They can be both in complete disbelief that anything hopeful, good, wonderful will happen and they can have a complete distrust of others’ motives, outcomes, or ambition.  If they aren’t careful, they’ll become misanthropes.

The opposite of cynicism isn’t blind optimism.  Cynicism is pessimism in its nastiest, most spiteful form.  It is useless, purposeless and dangerous.  It sits and stews in its own filth; it grows and feasts on others for fuel.   It infects others, casts doubts in otherwise strong minds.  In my domestic life, I’ve been known for leaving pots and pans of food sitting on the stove overnight.   Worse, I’ve left bowls of food in the microwave for say a few days at a time (a conservative estimate).  On one such occasion in one of our apartments, I went to microwave something, opened the door, and encountered a bowl of food covered with flies and maggots.  I had left a bowl of something cheese-based in the microwave, in the un-air-conditioned house for over a week.  Cynics moan and don’t do anything about it.  They writhe in their own nastiness.  Cynicism is the same as the maggot infested bowl of food: toxic and wasteful.

I have been tempted with that dark whisper in my ear, too.  Nothing you do will ever be enough.  It’s not perfect enough.  People are still lonely, aren’t they?  Did that change someone’s life, really?  Did that even matter?  Was it enough?  Could more have been done?  Could something have been done differently?   It directly plays into judgment of ourselves and of other people.

Judgment, another of the three monsters depicted in the picture, is probably the one most present in us.  Speaking for myself, it’s definitely the one that affects me the most.  Having majored in theology as an undergrad, I’ve always been curious of how Biblical quotes get misconstrued.  (See eye for an eye for example) but judgment is another one that we often misinterpret.  Judge lest ye not be judged doesn’t mean NEVER JUDGE ANYONE EVER!, it’s more about being held accountable to the same standards.  It’s a sort of moral checks and balances.

“Why do you look at the speck that is in your brother’s eye, but do not notice the log that is in your own?  How can you say to your brother, ‘Let me take the speck out of your eye’ and behold, the log is in your own eye?  You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your brothers eye.” Luke 6:42

Essentially, take a good hard look at your dirt first before trying to tell someone how they should clean up theirs, and how you could do it better.  Further, it’s helping the person remove the debris from their eye, help remedy the situation.  Not just letting them squirm with it.  (We’ve all had to have someone help locate an eyelash, contact lens, stray bug that was bothersome but we just couldn’t put our finger on it, literally, metaphorically.  It often required help, but only after we’ve done our own work first.)  Judgment is easy to do.  We do it all the time, consciously and unconsciously, and it’s constantly reinforced.  If you don’t believe me, the next time you’re in a grocery checkout line, please prove me wrong that the magazines won’t have someone featured in a bathing suit with cellulite!, stretch marks!, divorce!, love-child!, cheating scandal!, financial woes!

While judgment upon others is rude, pointless, and catty, judgment upon oneself is often debilitating.  It’s a silent loathing of all the questions I asked above.  Was it/I good enough?  Will it/I ever be?  Self-judgment leads into fear.  Digging heels into the ground, immobilization.  If cynics criticize and kill momentum, and judgment questions the quality and mode of momentum, fear prevents momentum to begin with.  Roosevelt described fear as that “nameless, unreasoning, unjustified terror.”

When I traveled to Rome in 2003, we climbed 323 steps to the top of St. Peter’s Basilica from on the insider.  When I reached the top, there was a thin mesh wire structure separating me from the winding tunnel of marbled staircase (safety) and falling to my death on the basilica’s alter below.  I begged to turn back and just go back to the ground floor.  Someone I was with at the time dragged me to the outside roof, to view St. Peter’s Square from the cupola.  I was terrified, shuffling my feet with little movement, forcing smiles in photos, grasping on to people and railings in every photo.  Was it worth it?  Of course.  Was fear the nameless terror? Of course.  It’s the same as fear of spiders, clowns, the dark, flying, tight spaces, needles, dentists, or fear of heights in my case.  It’s a nameless terror, unreasoning, unjustified.

What do we fear most in this work?  What is the nameless unreasoning, unjustified terror that we back ourselves in a corner for, shuffling our feet, clinging to railings?  That we’ll be proven wrong?  That our work will be deemed silly, pointless, and not worthy?  Do we fear it won’t work?  Do we fear that people will think we’re hopeless romantics?  Incurable optimists?  Wishful thinkers?  Do we fear that people will condemn us and ostracize us from the cool kids’ lunch table?  The fears are irrational, misguided.

What we should fear isn’t our insecurities and questions about what if’s, but the effects of what happens when we let cynics, judges, and fear-mongering take hold.  It only serves to cloud our vision and makes the road much more onerous, and intolerably longer.

The 3 Monsters become hungry.  Cynicism, judgment and fear prevent us from in the very worst of days, being with present to people and working to chip away, however slowly and heavy the work may be, a systemic approach that people are problems that need to be fixed, and it’s our job to control, supervise, and fix them.

That is not blind optimism, the chipping away.  It is hope that the chipping away is working towards something, something a little bit better, never perfect, not complete, but better than what was thought possible before.

And that, we have to be okay with, that it the chipping away might be good enough– cynicism, judgment, and fear aside.

We are not ignoring the enormity of the task ahead.  We are not settling for the world as it is, but as we know it should be.  Cynics, judgers, and fear-mongers, we have a table reserved for you together just beyond that exit sign.  Misery loves company.

timothyvogt
Who We've Met

Here is a guest post from a three seniors who talked about people they’ve met so far while working towards building a capstone committee.  Thanks Kyle, Joe, and Ashley for sharing your thoughts about the people you’ve gotten to know.

Kyle writes:
Justin is a cool person because he likes magazines and comics, trading cards.   He is a great person and I make eye contact with him.  I want to teach him some moves. I want him to follow his dreams and have a great life.  He likes Black Panther, Giant Man, Captain America, Thor and Batman, Black Widow.  We talked about super heroes and super hero movies.

Cal is all heart.  He likes superheroes, too.  The comic expo is a large event with lots of comics, Marvel and DC.  He is a fun guy, we talked about a new comic book that was about Jackie Chan Adventures. We both like fighting ninjas.

I was doing all these moves and met Robert.  Robert taught me more blocks, punches and kicks and special moves.  I like taking his classes to learn moves and stunts.  I would love to be a stunt man in the movies.  Robert likes Batman and Superman.

Dan is a great guy. He knows everything about himself and makes friends with the spirit in his heart.  Spirit and soul, he knows a lot about me. We drank some coffee and pop.

Joe Wenning narrated:
Chris Miller helped me practice and perform my Steamboat Joe, historical character.  We met at the Freedom Center to practice.  Chris knows a lot of history and gave me facts to learn more about my character.  We met at a restaurant.  Chris’ character is roustabout Henry.  He walks around the steamboat entrance at the Freedom Center.  Performing with Roustabout Henry was exciting and wonderful.  I look forward to performing with him again.

Joe shows off his catalogue of connections!

Ashley wrote:
I met Joan at the Blue Ash Recreation center.  She is a  coordinator and works in an office she does manager things.  We have things in common and like to do paper work, projects and researching for activities.  She also does some creative stuff.

I do photography with Jess and take some photos at Ault park and looked at the flowers and took pictures of them.

As you can tell, these are small seeds towards building something bigger.  People meeting each other and starting to get to know one another because they have some things in common.  I can’t wait to see what grows from these connections.

timothyvogt
I'll Fix Me -- You Fix You

Bad Habits:  We all have them.  Some we readily admit to having; others, we may not even know we have.  One thing’s for sure, it is somehow quite easy to recognize someone else’s bad habits. And it is REALLY easy to come up with ways to ‘fix’ those bad habits that belong to someone else.

Problem is:   the only person who can actually change a habit is the person him/herself.  No matter how much you love someone – or how bad you know the habit is for that person, you cannot MAKE that person stop the habit unless he/she wants to stop. You can push, prod, penalize and bribe; but you cannot make someone stop smoking, stop drinking, lose weight, stop leaving shoes in the middle of the floor, stop biting fingernails, stop leaving the toilet seat up, etc., etc. – unless he/she decides to do it.  I ought to know.  As a wife and mother of three sons, I have done my share of the pushing, prodding, penalizing and bribing.  Time and again I have learned that if a person does change, it is ONLY because he/she saw a need to change, had the desire to change, decided to change and then put the effort into making the change.  So really, truly, it is a fact of the human condition:  only the person him/herself can change a habit – not me, not someone else, not some program, not some professional, not some drug.  It really comes down to a personal desire and choice on the part of the person who has the habit.

Fixing Joe

All this might seem obvious.  And you would think that I have already learned this lesson enough times to understand it by now.  But, alas! Not so!  See, not so long ago, I was really, REALLY, intent on changing what I considered to be one of my son Joe’s worst habits.  But in his case (I am thinking it was because he has a disability and in the world of disability, things are supposed to be different), it was called a bad ‘behavior’.  And the ‘experts’ had convinced me that this ‘behavior’ had to be ‘modified’ to become a more ‘socially appropriate behavior’.  So I guess I sorta lost track of just who was in charge of changing said behavior.

The behavior that was to be ‘modified’ is hugging.  If you have read this post, you know that Joe has a long history of ‘inappropriate’ hugging.  And you know that I have spent many years trying to get him to stop this behavior.  Yep, I pushed, prodded, penalized and bribed with all my might – to no avail!  It was frustrating for our whole family, including Joe.  I pretty much resigned myself to the fact that Joe enjoyed hugging too much and he had NO desire to change the habit.  This was a bit of an ‘AH-HA! moment’ for me:  If Joe didn’t see the habit as a bad habit and if he did not choose to change the habit, it would NOT be changed! His Opinion / His Desire / his Choice.

You see, it doesn’t matter that Joe has been labeled with a disability.  He is a human being, privy to the same human condition that we all share.  No one else can MAKE him change his habits – even if they are labeled ‘behaviors’.  Only he can choose his actions.  Disability can’t take that power away from him.  His mother can’t take that power away from him.  No one else can ‘fix’ Joe’s ’behaviors’.  That right, that responsibility belongs to Joe.

I feel the need for a disclaimer here:  I realize that sometimes the things we do (habits / behaviors) are reactions and are not intentional actions.  Sometimes the reason for a “behavior’ can be very complex.  And sometimes a person has much less control over their own behaviors.  My thoughts here, in this writing, are in regard to behaviors that we are aware of and that we can consciously control.

Furthermore, as explained in my previous post, I realized (with Starfire’s help) that Joe’s hugging is directly linked to his amazing gift for making real heart-felt connections to other people.  And as I have come to appreciate Joe’s love for people and his ways of engaging and uplifting others, I have become more accepting of his hugging habit.  I have vowed not to stand in Joe’s way. I have tried hard not to interfere or overreact when he hugs people.  Well, it hasn’t been as easy as all that and I still had some learning / growing to do . . .

Although I knew that Joe was giving hugs as a means to connect to people, This habit was bothersome to me.  He still hugged even when it made the other person uncomfortable.  He would hug the same person seven or eight times in the space of an hour.  And his hugs were still ill-placed with strangers.  But by now I had learned my lesson well.  I cannot ‘fix’ Joe’s habit.  He is the one who must choose to make a change. So I held back . . . Until I just couldn’t stand it anymore!

Fixing Me

Joe and I were running errands.  It was one of those days that was crammed with lots of stops around town to take care of minor obligations.  I took Joe along because it was his day off from StarfireU and he enjoys this sort of thing (there are lots of people with whom to interact!). It had occurred to me that in recent outings with Joe, he had really been hugging strangers a lot.  There was a bunch to accomplish that day and I have to admit, I was a little short on patience.  I just didn’t think I could deal with Joe hugging everyone we came in contact with.  So, I decided to talk to him about it ahead of time.  I told Joe that people who didn’t know him probably didn’t want a hug from him.  I explained that most people are more interested in a conversation than a hug.  I told him that if he wanted to make new friends, this was best done thru conversations.  He listened but didn’t say much.

We first went to Meijer’s to shop.  As we were standing in the check-out line, Joe (predictably) started talking to the person behind us. Joe pulled a topic out of the air that had no relevance to the moment and he pretty much started in the middle of the story.  SO of course, the person was confused and looked to me to fill in the blanks, which I did.  Then the three of us had a pleasant conversation.  I can’t remember where we stopped next, but pretty much the same scenario played out two or three more times.  I was thankful that Joe wasn’t hugging and was trying to have conversations instead.  But, his attempts at starting a conversation left me filling in the blanks for him; and it was becoming annoying (did I mention that I was already ill-tempered this day?).  By the time we were at the cashier window picking up our order at Wendy’s, I had pretty much lost what little patience I had started with.  As I was paying, Joe leaned forward in the front passenger’s seat and said to the lady in the window, “Lauren Amos is having a baby!”  And the Wendy’s lady said something like “Oh, well good for her.”

OK, I said to myself as we drove away, Thant’s it!  I can’t take any more of this!  So I took a deep breath to gain composure and calmly began explaining, as gently as possible, to Joe how best to start a conversation.  I told him that he needed to talk to the person about something they would be interested in.  We know and love Lauren Amos, but the Wendy’s lady didn’t know Lauren and couldn’t care less about whether Lauren was having a baby.  I talked about how to start at the beginning of a story.  We had about half an hour drive to our next stop so we talked about things he could talk about with people that they would be interested in.  I told him if he couldn’t think of anything better, he could always talk about the weather – lots of people do that and we are all a little interested in the weather.  We practiced a few opening lines and our conversation drifted into other topics.

We arrived at the cell phone repair shop and walked in together with our cell phones.  As I showed my phone to the man behind the counter, another customer walked in.  He stood near us as he waited his turn.  I noticed Joe watching thid new person. And, as the repair guy walked away with my phone, I braced myself for whatever mid-story, nonsensical line Joe was about to deliver to this poor unsuspecting sole.  “How you like the weather we’re having?” Joe confidently asks.  I’m pretty sure my chin hit the counter as I watched an extraordinarily normal conversation take place.  By the time we left, the customer, the repair guy, the repair guy’s helper, Joe and I, all had a wonderfully fun conversation as we all took turns with the banter around the weather, cell phone cases, and dogs that chew cell phones.  When my husband picked up my repaired phone the next day, the repair guy told him what a great guy Joe was.

Here is what Joe taught me that day:  Joe likes to hug, but that ‘behavior’ is just a means to connect with people.  What he really wants is the connection and engagement.  He can learn new ways to get what he wants. He wants the person to like him and if a conversation is the best way to accomplish that – well then, by gosh, he will use a conversation.  If he can improve his conversation starter skills with some new ideas from me, he’ll even give that a try. He can understand explanations and weigh them in his mind.  He can take suggestions, practice new techniques, and use them.  OMG!!  All the tactics I have tried over the years to MAKE Joe stop the hugging were fruitless.  I was so focused on getting the behavior to stop that I spent little time trying to understand why the behavior was happening.  I didn’t ask, “What does Joe want?”  I was too busy pushing, prodding, penalizing and bribing to consider offering explanations, suggestions, techniques or tools.  One respectful conversation with him helped Joe decide for himself that, sometimes, he wants to talk instead of hug.  His Opinion / His Desire / His Choice / His Effort!!

And one afternoon helped me understand that Joe does not need me to decide what his bad habits are or to try to ‘modify his behaviors’.  He needs me to pay attention to what he wants or is trying to get and then to support his efforts in getting that by giving him information and some ideas to try.  Isn’t that what any successful intervention program gives?  Not force – Not bribes – Not punishment – Not Belittlement . . . SUPPORT to do what the person has chosen to do for him/herself!

I don’t need to fix Joe – I need to fix me!

Since this time, I have noticed that the less I interfere with Joe’s encounters with people and, the more I support him in starting conversations; the better his conversations are.  The less I try to control Joe, the more he controls himself.  He is more confident and HE HUGS LESS!   But don’t worry; Joe hasn’t stopped all hugging – just most of the I-want-to-connect-with-you-but-I’m-nervous-and-don’t-know-what-else-to-do hugs.  There are plenty of hugs for those occasions when a hug is definitely called for!

I will admit that this is a journey and I am still learning – I have some pretty tough, deeply ingrained, BAD behaviors to Fix – of my OWN, of course!

Jan Goings
An Open Window

Welcome, Kathleen Sheil, for a second time to Cincibility!  Read her earlier post here.

By Kathleen Sheil and Rachel Mecklenborg

On the night of Starfire U’s commencement, I was scared but at the same time I was proud of myself for accomplishing so many of my goals.  I did many things I never thought I could do.  I planned happy hours, a baby shower, and finished senior year with Starfire’s Annual Meeting, which was a night to remember.

Looking forward, I would like to keep my focus on event planning.  I hope to find a volunteer or job opportunity in this area.

One of my friends, Rachel, has been helping me connect to others also interested in event planning.  She’s a former event planner herself and loves meeting and talking with new people like I do.

Kathleen and Rachel, downtown Fountain Square

We’ve met with event coordinators from a few different non-profits like Make-A-Wish Foundation, Mayerson Foundation, and American Cancer Society.

After meeting wonderful people and learning about some great organizations, I’ve decided to focus on planning parties for Make-A-Wish Foundation. I chose Make-A-Wish because I can plan parties and help children, which I’m also very passionate about.

I heard about Make-A-Wish Foundation from a young woman named Becky who was on my Capstone committee, and helped Starfire’s Annual Meeting be the huge success that it was.  Becky now works at Make-A-Wish, and she thought volunteering would be perfect for me.  I’ve filled out my volunteer form, and I can’t wait to get started.  I’d like to help plan a Young Professionals Happy Hour for Make-A-Wish to spread the word about the organization and its mission.  Eventually, I also look forward to planning Wish Parties for the children involved with Make-A-Wish.

This connecting process after my time at Starfire U has been very unique in so many ways.  I am getting to know new people, and I’m beginning to feel like I’m living my event planning dream.  The biggest challenge I struggle with is making sacrifices in my social life to accomplish my goals.  I now realize my future comes first.

I can’t wait to reach for the stars in the event planning universe.

timothyvogt
1000 Paper Cranes

write often about my personal journey in this work and life, and all the forks in the road along the way.  The last few years have been full of mentors, leaders, and teachers that have given me a new perspective on what it means to live and work in the world.  I’m thankful for each of them.

One of my earliest teachers in this work/effort/life is Leslie Whitt Williams.

About 10 years ago, I was the “Volunteer Coordinator” for Starfire.  My job was to recruit people to help “chaperone” the “outings.”  I was really good at it.  I was proud of the way I was able to bring them in, get them to fill out paperwork, sign them up for outings….the processes of the job.  I knew it was also important because volunteers made the “outings” more fun.  But I never really thought deeply about why that was, or about how there might be something more to do than “outings.”

For each volunteer, I would ask them to come to Starfire’s office on Victory Parkway and do an “intake” meeting (I put some of this language in quotes now because that kind of language doesn’t actually help anyone live a good life.  It just serves as either meaningless jargon, or a weak attempt at giving myself professional credibility.  It’s not a natural way to talk to or about people.)

At the “intake,” I would present them with a bunch of information:  How to Interact with People with Disabilities (as if there were ever any one tried and true way to interact with any plurality of people at all), History of Starfire, and How to Sign Up For Outings were all the kinds of topics I would cover.  I would also ask them about what they liked to do, where they lived, etc.  Again, I was really good at all of that.

I began each of these volunteer “intakes” with a question:  “Do you have any experience with people with disabilities?”  (Again, this seems silly to me now.  It was based on my faulty thinking that anyone could actually have a translatable experience between two separate people because both shared a label of “disability.”)

Most people would say they had a brother or cousin or neighbor, or that they had volunteered or worked at some agency/camp, or they would just say “no.”

One day about ten years ago, two sisters called me and said they wanted to volunteer at Starfire.  Both were in high school at the time.  I think Megan was a senior and Leslie was a sophomore.  I can clearly picture them sitting in my office as we chatted.

When I asked them if they had any experience with disabilities, Leslie said “Sure!  One of my best friends at high school has Down syndrome.”

I can still remember how shocked I was to hear that.  It was the first time anyone had said anything like that, and the fact that it is seared into my memory ten years later tells you what a deep impression it left on me.

We continued on with our “intake,” but things were never the same after that.  Leslie’s words were a wake-up call, the first of many that have followed over the years.  If she was able to state simply that she had a best friend with a disability, then that meant it was possible for others as well.

I got to know both Megan and Leslie well over the coming years.

Leslie continued to teach me as a volunteer:  She has the most natural way of talking to people with disabilities.  I’ve literally never seen it from anyone else.  There’s no hint of condescension or patronizing tone, no playful humor, no overly positive “awwww” lilt in her voice.  There’s no pity or impatience or dismissive trivialities.  She simply talks to people as she talks to everyone.  I know this sounds strange, but it’s true.  It’s like she’s immune to our society’s way of subconsciously creating the “with-their-own-kind” mentality around people with disabilities.

And Megan has also led the way in showing what helps in the lives of people with disabilities.  She went on to graduate from college, and then did a year of service as an AmeriCorps volunteer at Starfire, helping us launch Starfire U.  Since then, she’s gotten a job at the Cincinnati Public Library and is married to a really great young man, and they still volunteer with Starfire.  But Megan has also formed a deep friendship with a young man who was in danger of getting lost in the “disability system.”  She has stood by him over the past four years as he grew into a caring and valued citizen.  She invited him to her wedding and she and her husband include him in various parts of their lives.  She has pledged to be a part of his life forever.  So she is now one of the people in the bottom quadrant of the 51 People chart for him.

I once told Allisa (Megan and Leslie’s mom) that whatever she did to raise two such amazing, smart and mindful young women needed to be bottled and sold.

After high school, Leslie went to study law at Case Western.  She asked me to be a reference for her for as she looked for summer jobs and other places to build her resume.  I was not happy to see Cincinnati lose such an amazing young person (to Cleveland, of all places!), but I knew she was heading for big things.

But before she could really get started, Leslie had to leave school and come home to battle for her life against Mitochondrial Disease.

She and I are friends on Facebook, so I’ve gotten to see the pictures of her wedding, and Megan brought her over to visit Starfire a couple of years ago.  When she walked in, everyone was, as always, drawn to her.  And, as always, she spoke in that distinctively indistinct and natural way with each person she met.  It was like listening in on conversations from the inclusive future we all dream of.

This week, Megan invited me to this Facebook “event” with these words:

My beautiful, intelligent, funny, incredible little sister is dying from a genetic disorder called Mitochondrial Disease.   (More details here: http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7929671/k.BDF0/Home.htm) She is rapidly running out of time…

One of the items on Leslie’s Bucket list is to fold 1000 paper cranes. According to Japanese legend this will grant one wish. I propose we help Leslie along and all fold a crane (or two, or three, or four!) in her honor. Maybe she’ll even get her wish!

If you would like to participate, grab a square sheet of paper, fold a paper crane, and write/stick/draw/glue some inspirational words, encouragement, positive thoughts, wishes of your own, etc., onto the crane!

Get them to me by 09/01/12 and I will string them together for her. Pictures/video of yourself in the process or with the finished product will also be appreciated.

Let’s show Leslie just how much we value our fellow man! Even if you don’t know Leslie, that’s OK! The more people that participate, the better! I’m leaving this open, so please invite anyone you wish.

http://en.wikipedia.org/wiki/Thousand_origami_cranes

Instructions: http://www.origami-fun.com/origami-crane.html

Edit: This has gotten huge! (Which is amazing!) Thanks to Crystal of Little Free Radical (http://littlefreeradical.com/) we now have a PO box where you can send your cranes.

Little Free Radical ATTN: Cranes for Leslie PO Box 850673 Braintree, MA 02184

My personal address is 15 Meadow Ln, STE 12, Highland Heights, KY 41076 Either address is acceptable.

Thank you, everyone!!!

So here’s your call to action:  Will you make a paper crane for Leslie?  We need to get them in by September 1st (next week!)

I would love it if we could make ours yellow, because yellow is the color of friendship.  And maybe we could pledge to follow Leslie’s (and Megan’s) example and look for personal ways to build natural friendships with our neighbors with disabilities, partly in honor of Leslie’s way of living in the world.

It seems like the perfect way to pass on the lessons Leslie’s taught us.

It’s funny to me that when I met them, I thought I was going to teach them “how to interact with people with disabilities.”  They taught me how to do that on that day.  And I will do my best to live out that lesson for the rest of my life.

And it’s funny to me that Leslie asked me to be a reference for her, because if she vouched for me, I’d consider it a treasure.

The Whitt Women – Allisa, Leslie & Megan

The Whitt Women – Allisa, Leslie & Megan

timothyvogt
Aggie & Bernie

In 2008, when I was at UC, I took a class on education as it fits into cultural phenoms and cultural groups.  We had to write a long, detailed ethnography, exploring our own families traditions, familial patterns, and the like, as a distinct cultural group with a lens towards historical events which would have shaped behavior.

We were to interview the oldest person we knew to begin to collect “data” and understand our families through genealogy, culture, spirituality, material possessions and artifacts, educational patterns, etc.  At the time, choosing the oldest person in my family was slim pickin’s.  Uncle Ron, my grandmother’s last remaining brother, was the oldest living relative I knew, at the ripe old age of 66.

While I had heard family names of people I’d never met frequently while growing up, and visited annually each Easter their graves at the Gate of Heaven Cemetery, I hadn’t given much thought to who these people were.  Two particularly great aunts were told in stories together and their names sounded like one: AuntieAggieandAuntieBernie.  The sounds kind of bumbling in your mouth like a car hitting speedbumps and potholes.  Fused in pronunciation and every story, they became one entity, a duo of women that existed together in every recollection, every tale.

In my ethnography I wrote in 2008 (I’ve probably saved every paper I’ve ever written) I write of Mary Agnes, “Aggie”:

meyer-family-21.jpg

Interviews with Ronald Lee Meyer,  Sr. (grandchild of Edward and Margaret Bahr Suermann) indicate that the youngest Suermann, Mary Agnes was born with cerebral palsy.  The Suermann family followed advice from the town physician [In Indiana] to institutionalize Mary Agnes, “Aggie” around the age of four, since public or private schooling did not exist for children living with disabilities.  Margaret was not comfortable with this decision, but followed the physicians advice regardless.  The institution was located in a nearby town in Indiana, though the exact city could not be recalled and public records on rural Indiana could not be found.  Ronald Meyer, Sr. continued that family visited Mary Agnes in the institution.  Each visit they found Mary Agnes weeping and incredibly unhappy.  The staff insisted that Mary Agnes was unable to talk.  The Suermann’s however, were aware that Mary Agnes could talk and that she told them stories of the treatment in the institution.  The Suermann’s followed the traditional advice at the time that children with disabilities should reside in institutions.  However, the breaking point in the Suermann family was on a final visit to the institution when Mary Agnes recalled to them that all children were stripped naked, laid out on a gymnasium floor on mats, and sprayed with a hose to be bathed.

I want to be upfront and honest that this is neither a criticism of the Suermann family or praise for how they lived and what was decided.  I wasn’t there and we all know that families make the best decisions they can with the resources and answers they are given.  Aggie, being institutionalized at age 4 was what was expected.  It was, the “norm” for a child that was deemed not “normal.”  The Suermann’s removing her from an Indiana state institutional was not the norm, but it would change how Aggie’s life would unfold.

Bernadine “Bernie”, Mary Agnes “Aggie” & Margaret    -sisters-
:ate 1930s.  It is likely that Bernie is around 20 in this photo, Aggie, about 12, and Margaret probably 24

The history of how the Suermann’s got from Indiana to Cincinnati is a little unclear.  We know that Edward Suermann (Bernadine, Margaret’s and Aggie’s father) died in 1924, two years after Aggie’s birth, falling off of a ladder.  We also know that Margaret Bahr Suermann (their mother) died in 1932 when Aggie was only 10.  Nevertheless, Bernie, Aggie, and Margaret Suermann (my great-grandmother) all came to live in Cincinnati at some point, likely in the late 1930s.

It seemed strange then to analyze my family through such a clinical lens, it seems more strange now that I’m in the thick of thinking about who is in someone’s life and how people can either hinder or help depending on how they see a person and what they hope for them.

Families aren’t immune to this either.  Families aren’t sterile.  They’re messy, chaotic, and randomly assembled.  You don’t choose the contents of a family.  It is, figuratively of course, a mixed bag of nuts.  Families are unique and strange.  Stories are sensitive, dates and years are important.  The list of people and events are sometimes hard to follow for outsiders.  History gets jumbled, mixed up, and feelings get hurt over heirlooms like knickknacks and jewelry, and photographs, houses.  Sentimentality takes over practicality, sometimes.

But stories persist in families, and they are often a sense of pride.  For AuntieAggieand AuntieBernie, their story has been told through my grandmother, and my aunts, who though teenagers when they passed, still remember their apartment, purchasing Bernie’s cigarettes for her at the pony keg, the Suermann sense of humor.

There weren’t, it should be noted, programs to keep Aggie involved in her community, likely no means to transportation save for a family car likely owned by a brother.  There wasn’t “respite for the family” or “respite” for Aggie away from her family.  They seemed to make it work then, and photographs show that Aggie was included, seamlessly, into most avenues of family life.

Suermann Cocktail Party mid-1950s
(from left clockwise: A “nameless” cousin or neighbor, older brother Leslie Suermann, Margaret Suermann Meyer, Bernie holding Aggie’s cup, Aggie

I wasn’t there, obviously.  I can’t say that it was easy, or difficult or blessed or burdensome or anything else that “official studies” report about families whose family includes a person with a disability.  I just know that Aggie’s story hasn’t been lost in my family.  It could have been had she stayed institutionalized in Indiana.  But in the picture above, she’s a part of the cocktail party, dressed fashionably for the 1950s, her hair nicely done, a brooch on her sweater.  I love that if you look closely behind the water stains and crinkles, Bernie holds Aggie’s cup, casually.  It’s subtle, but speaks of how the family included her, even in  drinking, (in true German fashion).  My mom pointed out once in these old family photos, that Aggie’s siblings were also sure to fold her hands nicely for the photo-op since she often had arm spasms, bending over backward to make sure she looked her best, even for a photo that likely only family and friends would ever see.

The Suermann-Meyer Family circa 1957, as best as I can guess.
Aggie is included in the large family photo far right, dressed in the on-trend, capris and black and white saddle shoes; My grandmother, age 12, sits behind Bernie shoulder right center

As it’s been told to me, Bernie felt both an family obligation, and some resentment in living her life “taking care of Aggie.”  Never married, and the second youngest of the Suermann children, she cared for Aggie until her own death in March of 1985, one month before Aggie’s in April.

Margaret died in February 1985, Bernie March 1985, and Aggie April 1985.  I missed meeting all of these women by a few months: I was born in November 1985, so have delegated myself as a storyteller, honoring the family legacy.

It becomes more personal now that my work is framed in the context of disability and services.  Aggie’s life was lived 1922-1985.  Of course, it’s an understatement to say that things have changed both for my family but also in the history of disabilities, how people were treated and choices families make.  It’s interesting to think that families have tried to do it alone.  Services have tried to do it alone and now we find ourselves at Starfire working on how to bridge these two.

Let me be clear here that the proverbial “it” here is not:
-fixing people
-doing things for people
-controlling people
-merely keeping people entertained
-transporting people
-babysitting people
-warehousing people

The “it” here is the sought after “right thing,” that often is grey and confusing and not clear.  It’s ultimately though, in most cases, a good life that both families and services must work towards together with someone.

Bernie, I’m sure, would have respected a service that could help as both she and Aggie aged, take care of some of the physical demands of caring for someone who uses a wheelchair while you get older, too.  A respectful staff member that might have helped navigate insurance and social security would have been welcomed.  An advocate or service facilitator that went over real options with Aggie and her family would have been good, too.  (And I’ll admit my ignorance, they might have had these things, but being 1922-1985, I’m sure they were limited.  There weren’t that many laws or options in place to protect Aggie, support Aggie, or assist Aggie her journey to discovering her gifts, or the Suermann family in understanding how their roles could be more than caretakers.)

Margaret, Aggie, Bernie, 1970s

Of course, Aggie was loved and cared for and included in her family at every event and photo-op…  She was well-fed, happy, lived with her family, and in all the photos I’ve seen dressed quite on-trend with ladies of that day and age.  Who was she outside of being Margaret and Bernie’s sister?  Who was she outside of being “cared for?” I don’t know.  So much of her story is tangled in Bernie’s story of “taking care” of her, as necessary and important and needed as it was, so I don’t know much about Aggie as her own person, and that’s important to the story, too.

I don’t think AuntieAggieandAuntieBernie’s story is particularly remarkable, inspirational, or anything of the sort.  In fact, I think it cheapens it when it’s read as some sort of heroic, or worse, ‘special’, tale of sisterhood.  I’m sure there were squabbles and disagreements, resentment from both sisters, annoyances, unspoken battles.  It’s just one story of one family making it work; they just happen to be related to me, and I happen to have beautiful pictures of their lives.  Every family has their own story that could be shared, or would prefer that it not be as they figured “it” out or as they continue to do so.  And the figuring “it” out, how to be a family, how to grow together, how to bend, how to make room for disagreement, how to celebrate, how to age, how to care for someone with respect, how to die, how to make “it” work, is let’s remind ourselves, not a disability issue.

As we at Starfire continue to change and grow and invent as an organization, we continually remind ourselves that working towards community is a together thing.  Myles Horton begins “The Long Haul” before telling his life story:

To my forebears and loving family, and to the unsung and sung women and men, the world over, from whom I have learned

I guess this post is just that.  Forebears, loving families, unsung and sung men and women from whom I have learned, keep learning with us.

Suermann Cocktail Party mid-1950s
(from left clockwise: A “nameless” cousin or neighbor, older brother Leslie Suermann, Margaret Suermann Meyer, Bernie holding Aggie’s cup, Aggie

I wasn’t there, obviously.  I can’t say that it was easy, or difficult or blessed or burdensome or anything else that “official studies” report about families whose family includes a person with a disability.  I just know that Aggie’s story hasn’t been lost in my family.  It could have been had she stayed institutionalized in Indiana.  But in the picture above, she’s a part of the cocktail party, dressed fashionably for the 1950s, her hair nicely done, a brooch on her sweater.  I love that if you look closely behind the water stains and crinkles, Bernie holds Aggie’s cup, casually.  It’s subtle, but speaks of how the family included her, even in  drinking, (in true German fashion).  My mom pointed out once in these old family photos, that Aggie’s siblings were also sure to fold her hands nicely for the photo-op since she often had arm spasms, bending over backward to make sure she looked her best, even for a photo that likely only family and friends would ever see.

The Suermann-Meyer Family circa 1957, as best as I can guess.
Aggie is included in the large family photo far right, dressed in the on-trend, capris and black and white saddle shoes; My grandmother, age 12, sits behind Bernie shoulder right center

As it’s been told to me, Bernie felt both an family obligation, and some resentment in living her life “taking care of Aggie.”  Never married, and the second youngest of the Suermann children, she cared for Aggie until her own death in March of 1985, one month before Aggie’s in April.

Margaret died in February 1985, Bernie March 1985, and Aggie April 1985.  I missed meeting all of these women by a few months: I was born in November 1985, so have delegated myself as a storyteller, honoring the family legacy.

It becomes more personal now that my work is framed in the context of disability and services.  Aggie’s life was lived 1922-1985.  Of course, it’s an understatement to say that things have changed both for my family but also in the history of disabilities, how people were treated and choices families make.  It’s interesting to think that families have tried to do it alone.  Services have tried to do it alone and now we find ourselves at Starfire working on how to bridge these two.

Let me be clear here that the proverbial “it” here is not:
-fixing people
-doing things for people
-controlling people
-merely keeping people entertained
-transporting people
-babysitting people
-warehousing people

The “it” here is the sought after “right thing,” that often is grey and confusing and not clear.  It’s ultimately though, in most cases, a good life that both families and services must work towards together with someone.

Bernie, I’m sure, would have respected a service that could help as both she and Aggie aged, take care of some of the physical demands of caring for someone who uses a wheelchair while you get older, too.  A respectful staff member that might have helped navigate insurance and social security would have been welcomed.  An advocate or service facilitator that went over real options with Aggie and her family would have been good, too.  (And I’ll admit my ignorance, they might have had these things, but being 1922-1985, I’m sure they were limited.  There weren’t that many laws or options in place to protect Aggie, support Aggie, or assist Aggie her journey to discovering her gifts, or the Suermann family in understanding how their roles could be more than caretakers.)

Margaret, Aggie, Bernie, 1970s

Of course, Aggie was loved and cared for and included in her family at every event and photo-op…  She was well-fed, happy, lived with her family, and in all the photos I’ve seen dressed quite on-trend with ladies of that day and age.  Who was she outside of being Margaret and Bernie’s sister?  Who was she outside of being “cared for?” I don’t know.  So much of her story is tangled in Bernie’s story of “taking care” of her, as necessary and important and needed as it was, so I don’t know much about Aggie as her own person, and that’s important to the story, too.

I don’t think AuntieAggieandAuntieBernie’s story is particularly remarkable, inspirational, or anything of the sort.  In fact, I think it cheapens it when it’s read as some sort of heroic, or worse, ‘special’, tale of sisterhood.  I’m sure there were squabbles and disagreements, resentment from both sisters, annoyances, unspoken battles.  It’s just one story of one family making it work; they just happen to be related to me, and I happen to have beautiful pictures of their lives.  Every family has their own story that could be shared, or would prefer that it not be as they figured “it” out or as they continue to do so.  And the figuring “it” out, how to be a family, how to grow together, how to bend, how to make room for disagreement, how to celebrate, how to age, how to care for someone with respect, how to die, how to make “it” work, is let’s remind ourselves, not a disability issue.

As we at Starfire continue to change and grow and invent as an organization, we continually remind ourselves that working towards community is a together thing.  Myles Horton begins “The Long Haul” before telling his life story:

To my forebears and loving family, and to the unsung and sung women and men, the world over, from whom I have learned

I guess this post is just that.  Forebears, loving families, unsung and sung men and women from whom I have learned, keep learning with us.

timothyvogt
Cincinnati, this is your invitation to community

A recent webinar series by TASH, called Dancing with Community, talks about the basic steps toward building inclusive communities with people with disabilities. It focuses on the research and ways to support a person who is stepping out of the role of service client, and into the role of community citizen. This blog is in response to the first two sessions of that webinar series.

The world needs what we know and who we know more than ever.”

– Aaron Johannes, Spectrum Society for Community Living.

The WE in that quote is referring to people with disabilities, and person-centered thinkers, who are finding ways to build relationships and strengthen community in an otherwise lonely social climate.

“…roughly 20 percent of Americans—about 60 million peopleare unhappy with their lives because of loneliness…”

The Atlantic, “Is Facebook Making Us Lonely?”

So… why is community alluding so many of us?

One reason might be the amount of service/outsourced care that we rely on…

“As of 2010, the country had 77,000 clinical psychologists, 192,000 clinical social workers, 400,000 nonclinical social workers, 50,000 marriage and family therapists, 105,000 mental-health counselors, 220,000 substance-abuse counselors, 17,000 nurse psychotherapists, and 30,000 life coaches. The majority of patients in therapy do not warrant a psychiatric diagnosis. This raft of psychic servants is helping us through what used to be called regular problems.
We have outsourced the work of everyday caring.”

This got me thinking about my own stories of outsourced care, and how one story in particular turned into community.

For years, I had back problems.  My mom has the same issues, so does my sister, my cousin, and the list of relatives who feel my pain (literally) goes on. I would go to a masseuse, and the problem would be solved, until a few months later when I’d need another massage.  At the time this was the only solution I saw, and it seemed an all-encompassing, cure-all solution to the problem, and better than any pill.  Fine by me.

But later down the road, those sporadic masseuse appointments weren’t enough. Eventually the pain was enough that I needed one every month, and I couldn’t afford this type of care. Maybe I needed a better mattress, different shoes, I don’t know what, but I was a college student on a shoe string budget, so I needed something that was proven to work.

I picked up a yoga mat and DVD, one of those starter kits that come all plastic wrapped together with lots of promises on the cover from Half Priced Books.  To my surprise, I started doing yoga at home in my living room, and something changed.  I could go weeks and not feel any pain whatsoever. I also felt more energy, happier, and less stressed.  But I was still doing it alone, in my living room, and though there were benefits it began to feel like one of the most isolating parts of my day, and I was doing it to myself.

One of the lessons in this TASH webinar is:

When we’re doing this:

Think this…

group_triangle.jpg

I left my dvd home practice for the studios. Going to a studio for the first time was intimidating, I felt like everyone knew something I didn’t.  Eventually that feeling went away.  I began to hear about potlucks at the studio, charity classeswine and yogaflow nights, and classes in the park with live music… I started joining in on stuff outside of the regular yoga class schedule.  Watching the sunset over Ault Park definitely beats yoga in front of a living room couch!

27090_386647593554_5332962_n.jpg

Yoga at Ault Park. (that’s me in the yellow).

Then I started doing trade work, going in and cleaning once a week, which got me free, unlimited classes. With the stress of having to pay gone, my practice got better, I became more committed.  The more I went, the more I began to connect with one teacher in particular. If I would miss a few classes in a row, she would text, “I miss you!” and I would be sure I made it to the next one. Before leaving for Macedonia, this teacher came to my house and gave me a private yoga session to help me mentally prepare. When I got back, she came to my wedding.

Now I belong to a community of yogis, one that I can tap into for resources if ever necessary.  All of these benefits came to me as soon as I stepped out of my living room and began to do yoga with other yogis, at the same time and the same place as they.

So… Finding a community and belonging to it was rather simple, once I got off the couch.

1) Find something I like to do/feel like I am good at

2) Go where other people are doing that and do it with them

3) Get to know those people

4) Make a commitment to keep going back

Do these steps look the same for everyone?  What about if circumstances are different?

What happens when I’m elderly?  Or if I were a single mother on low income? What about if I had a developmental disability?  Do the steps toward gaining access to community change?   Certainly, my life would look different, as Tim explains in his post here.  But I think the steps remain the same.

The Friendship Algorithm: Big Bang Theory

So what are the barriers that often stand in the way from a person taking those steps toward community? One issue that comes up in the TASH webinar is that with so many staff in place to help serve people’s needs, the greater community doesn’t feel needed.  The community sees a service worker, or a nurse, or a program, and don’t see where they fit into that equation or how important they are to it.

While a nurse, or a program, or a service worker is often vital to a person’s life, this staff might only “provide care” for the person, and not a life filled with friends or community.  It is entirely possible that relying on outsourced care workers for the end-all of our human needs might  unintentionally work toward isolating people from their community.   And anyone who has felt lonely or isolated would agree that friendships lead to better health, safety, and greater confidence to work toward our goals and dreams.

Now, my masseuse would not have seen it in his job description to find me a yoga community to belong to, nor would I have seen it coming if he had!   But, what if he had?  What if “care” meant holistic, complete, life-supporting, instead of specialized, segmented, and myopic?

Readers and community members, can you help us get to an answer?

How can we (Starfire/Cincinnati/Services) move to a more “community welcoming” mindset? If we want to get more people in the community involved in the lives of people with disabilities, how do we do that?  Can it be as simple as an invitation?

Cincinnati, YOU ARE INVITED:

who: all of us.  yep, we mean you too!

what: building an inclusive community focused on strengths, passions, and love

when: the time is now… it’s already overdue!

where: a family barbeque, a favorite park, the holiday dinner table, a Saturday morning on the front porch, a monthly gathering of friends, a project that needs some extra hands…wherever people are getting together

how:  here’s the easy part, and the most crucial:   just make or accept the invite to a community event.

Next time you’re going somewhere fun, invite someone new to join you.  Instead of staying at home, say “Yes” to an invitation.  Any invitation.  Find ways to get to know a person with a disability as a friend.  Then introduce your friend/son/cousin/sister to your friends, and their friends.   We’ll do our best to keep the invitations flowing, and the conversation open.

why: because we are all in this together, services and programs cannot be the final answer for people gaining access to relationships or a good life. And because leaving people with disabilities out of ordinary life obstructs society from access to a wealth of relationships….

timothyvogt
Knowing

I recently blogged about Madisonville for Queen City Discovery last week while the blog host was on vacation.  There was a simple invitation posted on Facebook that said “Would anyone like to write/contribute an article to QC/D to be published next week when I’m out of town on a trip? You can write about anything you want… mostly.”

The Bramble Patch

I replied and then got a response, leaving me with roughly 24 hours to photograph, feature, and write about my neighborhood, what we’re up to, what we’re about. I took photographs of places I knew about, and places I didn’t know much about. The Bramble Patch, featured above, is one of those places I do know that I photographed.  On any given evening, we could go there together, and I could probably point out 2 -5 people I know, some of whom I went to grade school/high school with.  I could introduce you to them, if you’d like me to.

The QC/D blog usually features abandoned buildings or long forgotten factoriesapartment complexes, schools.  Luckily, being curious, snooping, taking pictures, and digging around are all things I enjoy doing.  It surprises me how much people don’t do that.  And frequently we hear over and over again “we just don’t know anyone/anything/anywhere.”

Honestly, I grow tired of this rhetoric, that one can live somewhere for decades, months even, and not “know anything.”  It weighs heavily on some of us here, that the work of community has been delegated to a “service” instead of something we could all do together.  It is work, but it’s not something that can be delegated out and paid for like plumbing or dental work.

Weathered and forgotten building
Whetsel Avenue

QC/D features places often abandoned by people and society, beautifully deconstructed walls, chipping paint, old doors, left behind furniture.  I think there are places fully inhabited by people, families, pristine and up-kept, marvelously painted, and delicately manicured that have forgotten their purpose and place, too.  They’re almost as sad as as the abandoned places, full of potential, and completely unable to recognize their worth, or immobilized by the inability to see connections among neighbors, to talk, to leave the house, turn off the tv.  We’ve lost our way, I’m sure.  It’s really no surprise that some of the oldest cities centuries old have town squares, plazas, piazzas.  People were not meant to isolate themselves.

Corner of Madison and Whetsel (center of Madisonville)

I was recently at a coffee meeting with a parent, explained the role of capstones in the senior year, and started talking about people that the family knows, people who would know the person.  The parent replied that they didn’t know their neighbors.  Didn’t belong to community groups, church, no civic organizations.  They’ve always been “pretty independent.”  I reassured, that it was okay, there was no “perfect number of people” in someone’s life, and we didn’t have to know how a person fit into the project,either.  The parent thoughtfully remarked, “I guess that doesn’t help us out now.  Us being independent not knowing anyone.”  We wrapped up the conversation with invitation.  The parent was willing to learn, willing as they put it to “move out of my comfort zone.”  The parent realized, that independence, was really just leading to isolation.

While it weighs heavily, the resistance of some to know others, the fight back against building this with someone, of trying something other than what’s always been served, I also had another experience, of parents and people who are abundant with invitations, forthcoming with names.  Tim wrote about 51 people… In one such coffee meeting, a family listed with their son, 41 different non-paid people that the person knew in one hour.  41 potential connections.  41 already budding friendships.  41 people who already know the value of that person in their life.  41 people that could potentially support, invite, and love the person (and some of that 41 who surely, already did.)

madisonville-inside-of-mac.jpg

Inside of the former Madisonville Arts Center, currently under works to bring back to life as new community arts space!

I think of the buildings in my own neighborhood, historic and forgotten and think of what could be.  Wouldn’t that storefront make a wonderful local store?  That blue abandoned warehouse would be a beautiful music or events venue.  There’s the old house I still dream of being a coffeehouse even though it never got off the ground.  I think the same about  people.  Does that person even realize that their love of comic books could make a difference in someone’s life?  Does she realized that their shared love of music could change the way a person is valued? Wouldn’t he make a great friend?

timothyvogt
SRV in Grandpa's Words

For every birthday growing up, I received a card from my grandparents with a check in the amount of my age.  Scrawled out in Grandpa’s characteristic lefty-handwriting, with a smiley face in place of an “o” or two, it was just one of the small ways my grandparents of 40 grandkids (and parents of 11), made each one of us feel loved each year.

This was just the beginning of what was to be 40 grandkids… Grandpa is in the back with the hat and Grandma is wearing the shades over on the far right

Once I hit double digits, the excitement for those birthday checks of course grew.

But the best part of those birthday cards was not really the check.  It was the message inside.  Even after going through the trouble of remembering each one of us grandkids, they then went through the extra effort of writing us a special note inside.

Years after they passed (both within 6 months of each other), Grandma Mary and Grandpa Bill live on in each one of us.  My cousin Meredith has kept one of the cards she got for her birthday close to her still, and tells the story of how this quote has come to be advice she carries with her:

I feel it was a rare gift to see this wisdom put into real-life context, exemplified by our Grandma and Grandpa’s lives as role models to us kids… Thinking back on their lives and this wisdom, brought me to an unlikely connection with the theory of SRV (Social Role Valorization) I thought worth sharing…

SRV is referred to quite a bit on Cincibility, and at first sight is such an incredibly weighty term that most people probably feel their head spin around before being able to approach its meaning.  This is unfortunate because many of us here at Starfire have discussed how SRV is really the answer to so many of our modern woes, and to so many problems with the “system.”

So, Grandma, Grandpa, if you’re out there and can just be patient with me on this… Here is a most introductory, “SRV-extra-lite” way of sharing this theory, using your simple wisdom as a springboard:

“Watch your thoughts, for they become words.  The way we think about a person might be subtle or subconscious, but the words we use to describe him or her can be revealing.  When our thoughts devalue, our words show devaluation… and thus begins a vicious cycle…

“This consumer has explosive mood disorder, can’t be in crowds, and has pushed away several support providers because of hitting…”

vs.

Mindfully thinking about a person’s challenges and vulnerabilities, and planning for these challenges by focusing on a person’s natural strengths, passions, and interests.

“Abigail is very proud of her Jewish heritage and knows a ton about musicals.  She likes to try new places to eat around town and is a great conversationalist.  She may get uncomfortable in crowds, although she has every capability of expressingwhen she would like to leave a situation or go somewhere new, and needs someone who is willing to listen to these cues from her.”

 

Watch your words, for they become actions.  Words can create distance.  They can give off the air that one must first be “qualified/authorized/specialized” to be around a person unless they are “Staff/Special Educator/Family member.” This poses a barrierbetween a person and the community and lessens the likelihood that a person with a disability will end up being invited to “belong” to community.

“I have been working with this consumer for 5 years as her staff person. I have read and know her files.”

vs.

Describing a person’s roles in a way that invites and encourages a community person to share in the richness his or her life as fellow citizensCheck out Tim’s ad for Starfire

“You should meet Abigail, she is a friend, sister of 7, lover of musicals, and  loves eating out.  She has been looking for someone to try this new restaurant with…”

Community member: “I have been looking for someone to help me write my restaurant review blog.  Maybe we could review that restaurant together…”
Watch your actions, for they become habits. When community doesn’t feel the need, or feel comfortable to step in to be someone’s friend, or advocate, or supporter it becomes a matter of habit, or an unconscious reality. It becomes the unspoken norm to exclude, keep separate, or seek “programs” for people with disabilities.

A recent report came out revealing that people with disabilities often “do nothing all day.” 

vs.

Finding ways to make inclusion a way of life: means working hard to break the old habits of “us” and “them,” “client” and “staff,”  “the served” and “volunteer.”

The more we act to invite people into community life who are marginalized and excluded, the more we are choosing to make inclusion a part of our lives.  When we get in the habit of including others in our lives, everyone involved has greater access to what is known as the “good life”!


Watch your habits, for they become character.  
Any person routinely involved in activities with others on the sheer basis of “separate-ness,” “different-ness,” and negatively perceived labels, will lose a sense of character or selfhood.

When people who don’t share similar interests or passions are grouped, often that sense of self will atrophie, as study show a person in this situation often reports feeling “anonymous” and unmotivated. 

vs.

Sharing what makes you distinctly unique such as a sense of humor, a passion for cars, or your love for swimming, with others who share the same passions on a regular basis, work to build a person’s character on the basis of their strengths and contributions to others.

Abigail’s passion for song and dance really makes going to any musical production with her all the more enjoyableShe brings out the best in me!”


Watch your character, for it becomes your destiny.  The destiny of a person with a character based on “clienthood” has historically looked pretty dismal:

In its everyday reality, denial of membership decreases severely disable people’spower to pursue their own goals and increases their vulnerability to dehumanizing, or neglectful, or abusive treatment.  Sometimes predators victimize people with disabilities, but people who mean well can also diminish excluded people’s humanity.” –John O’Brien and Connie Lyle O’Brien, from their book “Members of Each Other.”

vs.

Fellow citizens who make the constant effort to include, invite, and invest in one another’s personal success, create a destiny that looks much more welcoming to all people….

 “To reduce the chance of unpleasant and dispiriting policy outcomes, learn more of the nature, extend and bases of social relationships….To learn, one need only to get involved: listen, look, try to understand situations in terms of shared humanity, and respond actively to invitations for personal engagement and civic action.”  –John O’Brien and Connie Lyle O’Brien, from their book “Members of Each Other.”
So, what are you thinking, saying, acting, and being?

timothyvogt
riding the white horse – part two of a two-sides to every story tale.

part two. find part one here:  riding the white horse – part one of a two-sides to every story tale.

To be honest, eventually even I, the self-righteous, the critical, the outraged, started getting the feeling as a caregiver that it was hard enough work fitting into the “system” of policies and procedures, and supporting a person beyond that just ruffled too many feathers. I started watching the clock more and more… even caught some reality TV during my shifts for god’s sakes.

Wait, wait, wait.  Before I get going on this, perhaps I should backtrack, starting from square one…

well maybe not that far back…

It was freshman year of college, and I was going to be a documentary filmmaker, thank-you-very-much.  If not that, then National Geographic would certainly be knocking down my door eventually anyway.  Naturally, I took a course called Non-Fiction Film to head me in this direction.  I didn’t know it at the time, but this course became more or less a game changer in my straight and narrow path toward The Oscars.

One of the directors we focused on was Frederick Wiseman (who, by the way, is a very impressive name to drop when you’re applying for film school, FYI).  He directed in true Cinéma vérité style, and had me mesmerized with his fly-on-the-wall approach to documenting a mental institution.  The film is called Titicut Follies, and it repulsed me, angered me, and turned the tables on me.

near minute 18 on the youtube video linked below, you’ll find this shot

Wikipedia Synopsis: “Titicut Follies portrays the existence of occupants of Bridgewater, some of them catatonic, holed up in unlit cells, and only periodically washed. It also depicts inmates/patients required to strip naked publicly, force feeding, and indifference and bullying on the part of many of the institution’s staff.”

How could human beings be disregarded so blatantly in our country’s not so distant past, without someone holding up a yellow flag, calling a major foul? I knew what I had to do.  I went to my closet of yellow flags and started packing for the journey to come.

“She has explosive mood disorder.  She may bite, or hit, pull hair, or act out in fits of rage.  We haven’t been able to keep a staff person on board with her for long, usually people ask to leave. We’re looking for someone like you because you’re so calm, we think your demeanor will be able to handle when she gets upset.”

This was my supervisor, telling me about a new “consumer” I would start working with.  I started work as a caregiver after a position as a camp counselor for people with disabilities led me to the field, and one year after I graduated from college I was practically begging the young woman who interviewed me to give me the position.  Not because I had been unemployed for long, I had just moved back to Cincinnati and was only out a couple of weeks.  I guess it was part extreme desire to help people, and part underground investigation into the world of a person with a disability.  My bag of yellow flags in tote.

I would be the best at calling foul.

“We really need someone to start immediately.  We trust that you know enough and can work with difficult cases, so you don’t have anything to worry about.  In any other situation I would be there to help, to train you for a day with her, but one of the staff who has worked with her a while can show you the ropes.  She takes medication three times a day, always eats out every Wednesday and Sunday, she goes to the grocery store….”

Her voice droned on, I felt swallowed by the details.  She had just described a monster to me, with claws, sharp teeth and all, and then told me I can handle it.  Well, after just 2 months of working in this position, I felt that might be a compliment.  They want Me to take on one of the worst consumers they’ve got, because I am special.

The hallway to her apartment stunk, the dimly lit stairwell nearly hid the stained carpet leading up the steps.  Knock knock.

“Hello?!,” the voice elevated at the “o”.

It was quicker than I expected, I couldn’t get a third knock out before the door swung open.  I had stood close to the door as I knocked, so by the time I realized she was standing there in front of me we were nearly in each other’s faces.  At first, her appearance came to me in pieces, like data building out randomly to form a picture.  Wild hair.  Balmy skin.  Untamed eyes.  Frumpy clothes.  A thick build.  I wanted to grimace.

In the expectation that right then and there, her rage would rear its ugly head before me and send me in to panic mode, I sucked in some extra air and took a step forward into her apartment.

Abigail.

“Hiiiii,” she said invitingly.

“Hello, I’m Katie.”  My senses were coming back to me, and I smiled at her softness as she greeted me.  Maybe everything they told me was wrong.

Behind her, her caregiver on duty shuffled around so she could show me in the door.

“Move out of the way so she can get in Abby!” she said.

The tone of this caregiver was less inviting, but I figured she must have to be tough to work with someone so aggressive as Abigail.

“Abby and I went to the grocery store yesterday and bought stuff for dinner,” she immediately began. “The only thing she’ll eat is hot dogs, or there are some microwave dinners in the freezer you can heat up.  She takes a bath every night at 8pm, and has to get up early for work so she goes to bed after that.  Usually her meds make her too tired to stay up real late anyway.  Did Terry tell you how to fill out her daily logs?”

“Yes…” I nodded. We had walked around the small apartment and stopped by the couch covered in plastic.  I fumbled looking through the binder she thrust at me, searching for the required documentation, but all the while distracted by my fellow caregiver’s body language which told me she was in a hurry to leave.  She wasn’t going to stay and “train” me at all… I was going to be left alone with her.

“Uff,” I thought. “No problem.”  I wasn’t going to let it bother me.  I have traveled on sketchy midnight trains through Transylvania, coached hours of labor, and ate coagulated cow blood (at first unknowingly, then knowingly).  I could be brave.

I heard the story about Abigail and believed the picture that was painted of her to be true. What I found was something opposite, someone who was not a monster at all, but a young woman close to my age who had passions, interests, and gifts to be shared.

Inherently, human beings are of community, we take social cues from our culture, and we adapt to our environment.   Immediately, I was curious about stories like Abigail’s, and how they fit into our cultural dialogue.

So, like any anthropologist would, I began taking notes. Literally.  Not case notes about Abigail, but rather as her life as a “consumer.”  I noted patterns.  Transient “staff people” in and out who take over the remote until the shift ends. And cook hotdogs. One day they love you and bring you a potted plant, the next they find another job and someone new is getting frustrated, trying to figure out why you’d like to continue this “watering” business so badly.

Most of all, I noted how Abigail’s main access to community was no longer family.  It was staff.  But it seemed that the system she was a part of was adding to her isolation.  It started with the story I was told about her before I even met her, the girl with explosive behavior disorder who had a “history” of violence… and ended with the lack of motivation in staff to do anything more than required to support her life.

Truthfully, in the world of “caregiving” I was in, there was rarely any continuity from one “shift” to the next, so very little team work, and very little spirit.  And, somewhere in all that blandness, Abigail was lost, invisible… quietly watching it all so mundanely happen around her.  We end up disabling the person, as Judith Snow put it.

In rides the white horse.

During SRV training in West Virginia, we met a man who drives buses part time, and cares for horses part time.  He has one horse, a white horse, that he trains specially for therapy purposes for people with disabilities.  In all his good intentions, I think of how little Abigail could use a ride on a white horse right now, something that would “fix” her explosive tendencies. Instead, I think about how very much in need of a few more friends she is. I am interested, instead, of telling a new story about Abigail, one that I know that doesn’t involve any violent past, or explosive behavior.  One that speaks to her humor, her compassion, her sweetness.  But her old story follows her, and doesn’t lend itself to new friends very easily.

Some weeks caregiving, seeing people like Abigail open the door for me and ask how my nieces and nephews were doing was the reason I had to keep doing the work.  She remembered what I did last week with my family, and wanted to know what my favorite restaurants were.  We talked about musicals, and I was able to convince the supervisors to let me go with her to her very first live performance (even though they insisted she hates crowds and will throw a fit in public). We smiled the whole time.

But most weeks, caregiving felt like being part of a disjointed body of weakened limbs.  For many of the women I was working with, single mothers working their way through night classes, money was a big issue. I had student loans to worry about, but compared to my coworkers this was nothing. The wages for a caregiver are that of a hostess at a restaurant. You greet, you seat, and you wait for the next person to walk through the door. At 9 dollars an hour  (9 being the high-end of the payroll), it seemed too much to ask to give more gusto to the work, to go above and beyond. Here’s where I throw a yellow flag.  Or maybe all the yellow flags I have left in my bag.  It’s at the system, however cliche it may sound.

I suppose that’s why I had to leave my job as a caregiver.  It wasn’t because of Abigail, but the system that kept me from feeling I could truly make a difference in her life. Today I can call Abigail and pick her up to go out, with some resistance from staff who worry they might get in trouble for letting her hang out with me (not because we shoot up heroine together, but because we’re friends.. and there’s no paperwork for that).  No one can fire me from being her friend.  So perhaps, ultimately, I left the job in return for her friendship.

(read more about the danger of a single story here)

timothyvogt
Ten Hours With Starfire

This post is a copy of a letter originally sent to Cincinnati Enquirer journalist, Krista Ramsey, in response to her “Best view of Cincinnati – it’s heart” article. In this article, Ramsey describes her work as a journalist the chance to see into the hearts and minds of Cincinnatians.  In gratitude to all her readers, and the kindness of Cincinnatians, Ramsey ends the article with this call to action:

Are you a registered non-profit that could use 10 hours of work from a willing but not widely skilled journalist? Could I come and spend a day with you, and be of some service?

Send me your thoughts at kramsey@enquirer.com. In early August, I’ll choose a place to “pay it forward.”

Dear Krista,

I am writing in response to your column on July 19, about the great view you have as a reporter from the 19th floor of the Cincinnati Enquirer, into the hearts and minds of Cincinnatians.

We at Starfire would like to cordially invite you to spend your 10 hours of service with us, and see the great view of Cincinnati we have here, from our own “19th floor panorama.”

Although Starfire is a smaller non-profit, residing in a one-story building, we see a large part of the city from where we work every day.

Take a look:

Vonceil and Tonya are both nearby Walnut Hills residents.  Every Friday they meet up at the Julie Hanser garden to water the vegetables, turn the compost, and pull out the weeds.

Vonceil and Tonya planting potatoes

Chris and Tammy are Anderson Township natives who love animals, and together they organized a dog parade to benefit the SPCA at their local park.

Dog walk attendees – in total the parade raised nearly $150 for the SPCA cruelty to animals fund

Joseph and Dugan are passionate about alternative transportation, so they organized a Streetfilms Festival featuring local films about urban cycling to an audience of over 150 people, hosted downtown at the Emery Theater.

Cyclists and Supporters of Streetfilms Festival gathered in front of Fountain Square during the weekly Northside Slowride

Jamie, Ty, and Hollywood are fashionistas who organized a runway event, “Urban Glam,” and all the proceeds went to local charity, Kenzie’s Closet.

Model on the Runway for Urban Glam by Jamie – Fashion Show benefiting Kenzie’s Closet

You see, from this vantage point, every act of service is a potential for making a personal contribution.  Gardeners, musicians, cyclists, animal rights advocates, laughter yoga instructors, fashionistas, journalists, and basketball coaches, no matter who you are and what you do, you can find a way to volunteer your time with Starfire in the most impactful way possible.

It can be itty-bitty-scale, small-scale, medium-scale, or grand-scale.  Whatever service work might lead to deepening relationships in our community, we support it.

Surprising your neighbor with a bouquet of flowers at her doorstep, lasagna dinners cooked up for the local police department, inspirational note cards handed off to passersby downtown, all are random acts of kindness we encourage at Starfire. Just in the last year, we’ve given over 4,500 hours of service to our communities.

We are constantly thinking of ways to give back to our friends, our families, our neighbors, our local businesses, and hope to build better connections that way.  Service is one of the ways we try to “dig deep.”

Lastly, you mentioned being a “willing but not widely skilled journalist.” We would definitely beg to differ.  We’d love to hear all about your hobbies.  What is one thing you did last month that you could not live without?  What do your friends and family say about your strengths?  We’d love to hear about that one thing people always call on you for, whether it’s a certain dish you’re asked to bring every Christmas, or a keen eye for the best place to bargain shop.

Whatever it is, it will certainly come in handy!  Have coffee with us, and by the end I’m sure we could have a whole list of ways you could give back to Cincinnati, and would have a group of supporters cheering you on and helping you make it happen the whole way.

 At Starfire we open doors for people to contribute and share in the most inclusive, person-centered way possible. We’d love it if you’d come and see for yourself!

Sincerely,

Katie

Katie Bachmeyer   | Researcher Storyteller |  Starfire: 513 281 2100 (ext. 112) https://www.facebook.com/starfirecincy

timothyvogt
riding the white horse – part one of a two-sides to every story tale.

This post is in response to a writing prompt given during a Social Role ValorizationTraining in West Virginia this May. The prompt was: “write about someone else’s life from his or her perspective.”  Below is my own personal account of a friend’s life who I met in 2009.  Part two will delve deeper into the metaphor of the white horse, and my first experience meeting my friend.

My name is Abigail, and I want to tell you the story of my life.

a white horse enters the scene.
what automatically comes to mind?

I was born the youngest of 8 kids. My father remarried after his first wife died. My 7 older siblings are my “half” siblings. He married a much younger woman than he. Together they had

me.

Since I was born when my dad was in his 60s, my older siblings are all much older than me, and had moved out of the house, so it was like I was an only child growing up. The times when it was most apparent that I in fact had a rather large family was during holidays, like during the Jewish holiday of Shavuot, when the house would fill up with the sweet smell of cheese blintzes and butter crackling, and my half-siblings and their kids were all in from out of town.

Apart from holidays, childhood was spent a lot with mom. It was because of her that I discovered how much I LOVE musicals. My ma and I could sit inside on a Saturday, she with her pack of cigarettes and me with a plate of snacks, and we would watch Singin’ in the Rain, My Fair Lady, and Mary Poppins back to back. I loved the dancing, the merriment, it made me feel like I could almost escape into that other world where everything was art.

Fred Astaire and Ginger Rogers.
“Life is an art, and you are the artist.”

After graduating from high school, I moved out on my own. I didn’t have many friends from high school. To be honest, not many kids in my class ever talked to me. I went to a large public school, but took often classes in a separate part of the school apart from most of my classmates. During lunch I usually sat with ten other students who also had class in the separate classroom. One of my classmates and I would talk about our favorite Yiddish plays, and come time for Christmas when all the green and red would spring up everywhere, we’d give each other the knowing eye. With this exception, the most I truly shared in common with people in that separate classroom was how much time we had to spend together, so I kept mostly to myself or talked to the teacher.

Now in my later twenties, I still watch musicals from time to time. They are sort of like old friends, who I’ve known since way back. I laugh when they laugh, I know their secrets, I can finish their sentences. Still, it hasn’t been the same watching them since my mom passed on. When I got the call from my dad, even though I was expecting the call for some time, the shock took me over. I was shaking, and as I begged him for more details, hoping to find out something different, some other truth, I could hear my voice getting louder. My chest tightened. Tears bloomed in my eyes.

I was alone.   (Well, I am never really alone, one Staff person is always with me in my tiny one bedroom apartment).

When I hung up the phone, and my gut felt punched out, I told the Staff person on duty that night I lost my mom and she gave me a hug. I cried. I didn’t call my siblings. I didn’t call any friends. It was right around 8pm, the time when I always take a bath, so I got undressed and grabbed a towel, and cried some more in the bathtub until the water got cold. When I got out I called the Boss of my Staff so I could take off work the next day. I was told I better go, that it wasn’t going to do me any good to take off, and going to work in the morning was better than sitting at home and feeling bad. Plus, who was going to be my Staff all day tomorrow, on that short of notice?

If you ask me, I like a routine. I like to know what I’ll be doing for the month ahead of time. That’s one of my characteristics. When you have Staff people coming in and out of your life, and each new staff has a different way of doing things, or a different idea for the way I should do things, you’d probably start to understand where I’m coming from. This way, even if you think I’m uber schedule-oriented, I have to keep somewhat of a routine in my life just to feel sane. It helps me be sure that the Staff people, who take me grocery shopping, help me do my laundry, and cook my meals, are getting everything done in a timely manner.

You see, I can’t just run out to the store if Staff forget to pick up my groceries or take me to the Laundromat, I don’t have a car, and it would be unheard of for me to walk there by myself. So even if a Staff thinks all this scheduling of mine is too much, I’ve found they don’t stick around for too long either way, and sometimes having a schedule makes for less arguing in the long run. It’s sort of like married couples, I guess, only they call me Consumer, and I call them Staff.

Recently I decided to quit my job. The place I have been working at for 9 years. I know what you must be thinking. In this economy, you might think I’ve gone off the deep end to give up possibility for stability, for reaching the 10 year mark, maybe getting a raise. But you see, I was earning a sub-minimum wage for doing the same tasks over and over for 9 years. I learned a few things, but to be honest the work never did much for me. I didn’t make any friends while I was there, and at times I got really frustrated with the people.

Although for a good while, even though the money was minimal, I still liked getting a paycheck. I liked having that extra cash to do with it what I’d like. Wednesdays and Sundays are my nights to eat out, so I needed my own money for that at least. At home I eat mostly frozen foods and hotdogs, partly because it’s the only thing I know just about anyone can cook and partly because my Staff and I have used the same grocery list for years. But a girl needs a little excitement in her life, and dinner nights are that for me.

Fortunately, times do change, for better or for worse. When my dad died a year after ma, I was torn apart.  But he did leave me a good stash of money. And just like that, voila, I didn’t need a shitty job anymore.  I could afford my dinner nights on my own.  I got a new apartment, with curtains and a clean carpet and a swimming pool. The new furniture didn’t need a plastic cover to protect from bed bugs any more. And my closet got filled with clothes that fit me (and fit into the 21st century).

“Life is full and overflowing with the new
But it is necessary to empty out the old
to make room for the new to enter.”

So I quit my job of 9 years.

And for what it’s worth, things are better. But it wasn’t super easy, all of this transition. A former teacher, my brother Jim, Staff and Bosses areall weighing in on what’s best for me, and they are helping make positive changes in my life.  But as far as my job, no one really thought it was best for me to quit.  Was my only way out to fight my way? Well, I did. I kicked and shouted my way out. Literally. I’m not proud of it, but I am happy it got me somewhere different on a schedule that seemed right for me.

So I say I quit. My Staff says I was asked to leave and “can never go back.” Good riddance. I think whatever I do instead of that will be more worth my time. Even if it’s sitting at home for a while until Staff figure out some other Program I can fit into. Which is what I’ve been doing lately, and I don’t miss that place one bit.

timothyvogt
More With, Less For

So, today was my first full-day “back in the program.”  I’ll be spending my Wednesdays networking, building capstone committees and working with two people on their senior capstone projects.  Since we’re early in the year (only into week 2) we’ve got some time to work with.  I needed to get a training tool prepared for a meeting happening tomorrow in Anderson, so we decided to do this together as opposed to me alone at my desk, later.

Here’s what we did today in preparation for a interviewer training.  As you know, Starfire’s working on some new goodness.  One of the things Sarah and I have been working on is hiring interviewers in the 5 regions of Cincinnati.  The picture below shows what we’ve been up to.  Tomorrow, we are training our Anderson/Eastside people and will bless and release them to start interviewing and being curious about their neighbors, and tying those connections back to Starfire. (To be potential committee members for capstones, to possible teach a class, to host us somewhere, to be someone potential friend, anchor, ally.)

Here’s what we spend our time on this morning.  Per an interviewers request, she asked for some go-to questions to help frame the conversation when she meets with people.  Together, Michael, Melissa, Ashley, and Kasey worked on this very training tool that will be used tomorrow, and from here on out.  When struggling to come up with questions, Melissa said, “why don’t we use the sharing places and relationships?” as a framework for our questions.  That’s exactly what we did.  In having her present to share her insight, we’ve created a pretty useful document!  It’s posted below.

Some recommendations for being curious & interviewing neighbors

Asking about gifts… Many people aren’t used to thinking of themselves and their communities as “gifted.”  Here is a way to think about what kinds of gifts people and communities might have (adapted from John McKnight).

Head is knowledge. Do you know about history, language, who lives where, where to get something or how to get something done, are you a mentor to others?
Heart is passion. Do you love of children, prayer, a love of the neighborhood, love of sports, passionate about locally grown food, passionate about community activities being free or affordable?
Hands is your skills of any kind. Carpentry, handyman, plumber, guitarist, gardener, seamstress, writer, cook, website designer, engineer, mechanic, bartender?  What things can you can do?
Teachable is what allows the neighborhood/community to grow because of a willingness to share and teach. I can teach kids to play soccer.  I can teach you how to knit.  I can teach computers to others.  I can teach about healthy eating.  I can teach about photography.  I can teach about hosting a party.  I can teach about making crafts. I can teach about childcare.  I can teach about sewing.  I can teach about how to get around the neighborhood/city.

Where to start?

Just the facts…

  • Name, age (optional), street they live on, how long they’ve been in the neighborhood

  • Married?  Single?

  • Children?  Grandchildren?  Other family members?

Sharing Places…

  • What are your favorite places in your neighborhood?

  • Where do you frequent?

  • Where are you a regular?

  • Where do people know your name?

  • Where did you grow up?

  • Where did you go to school? Grade school?  High school?  College?  Vocational? Continuing education classes?

  • Are you active in a church?  Which one?  How long?

  • Where do people meet in the neighborhood?

  • Where are the “third spaces?”  (Coffee shops, parks, community centers, libraries, etc.)

Making Contributions…

  • What community organizations are there in the neighborhood?  (YMCA, Red Cross, childcare centers, senior center, fitness center, local businesses)

  • Are you active in any community associations?

    • Which ones?  What do you do as a member of that organization?  How do people get involved in that?

    • In what ways do you think people could give back to the community?

    • What needs do you see? (don’t let this linger to complaining though)

    • What project would you love to be a part of?  (if you could wave your magic wand…)

    • What is the thing you wish was most celebrated about your community?

    • What do you want people to know about your neighborhood?

Experiencing Respect…

  • What company they might work for?

  • What do you do (for a living)?

  • How did you get there?  Ie: used to be a teacher, now I’m a….

  • What do you think your best trait is?

  • Where do you feel valued or respected in the neighborhood?

Making Choices…

  • What are your hobbies?

  • Where do you spend your free time?

  • Why did you choose to live where you live?

  • What’s coming up for you that you’re excited about?

  • Where might people be able to make choices about changes the neighborhood?  (Community council?  Committees?)

Growing in Relationships…

  • Who keeps the “pulse” of the neighborhood?

  • Who knows what’s going on?

  • Who plans events?

  • Do you have children?

    • What are they into?

    • Does your family live close by?

    • Where did you meet your most recent friend?

    • What do your friends do?

    • How do you spend time with friends/family?

    • Who else in the neighborhood do you think I should talk to? ** (ask this question every time to find your next person to interview)

If you’re stuckhere are some other questions to keep in mind during your conversation.  Try noticing…

  • I see you’re wearing a XU hat. Did you go there?

  • Is that a walk-a-thon shirt?  Do you do charity walks often?

  • That’s an awesome outfit… are you into fashion? Where did you get that scarf?

  • I see you brought a book with you.  What’s that book about?

  • You seem to know a lot of people here…Do you come here often?

Be curious…about something they already said.

  • You said you went to Mexico last week, do you travel a lot?

  • You’re into biking?  How would someone get involved in that?

  • You mentioned that event coming up.  Did you help plan it?  How long has that been happening?

  •  You said you were late because of a running group.  Have you always been a runner?  How many people are in it?  Where does it meet?

  • You said you needed to leave by 7 because of a women’s group.  What’s the group about?

Helpful Tips

  • Share personal information about yourself at the beginning. If you share your interests, family, work, how long you lived in the neighborhood and why this neighborhood matters to you, people are more willing to do the same and it puts them at ease.

  • Give them a brief intro of why you’re interviewing them and what you’ll do with the information.  “I am an interviewer with Starfire.  Starfire is a community building organization that believe that all people have interests, skills, talents, and gifts that should be celebrated and recognized.  I also live in the neighborhood and I think that by knowing our neighbors, we can create a more vibrant and inclusive community where people can grow in relationships, make contributions, experience respect, share common places, and make choices about how they want their lives and community to look. ”

  • Be honest that you are interviewing them to be curious about gifts and your shared neighborhood.  You are not there to collect complaints about the neighborhood or what hasn’t been done over the years.  This is not a time to complain about dislikes and deficits.  You are not to help fix community problems.

  • Use the questions to guide the conversation but let it flow naturally.  You don’t need them to answer every question and you don’t want it to feel like an interrogation.  If the conversation is going wonderfully and is natural, that’s great!  Keep it going and notice what they mention something that sparks your interests, curiosity, or tells you something more about the person and the neighborhood.  For example, they might casually mention the parish festival is coming up for them. This is a great opportunity to find out more about that!

  • While you listen, begin to make linkages in your mind to other neighbors you have already met.  What might this person be willing to share with others?  What might they be willing to teach to others?  What might they be willing to act upon?  Who have you met that this person should meet?  Or what have you heard from others, that this person would also be interested in?

  • Ask if it’s okay to share their information.  (Interest, talents, skills, hobbies, community associations with others who have the same interests.  Explain that all introductions to others would come through you with their permission.)

 

So this was a morning work with people, as opposed to at my desk alone for people.  We’ve got to keep doing more with, and less for.  Without Melissa, we wouldn’t have thought to frame questions with the five valued experiences!  I can’t wait to use this tomorrow…

timothyvogt
Things Change, And That's the Way It Is -- Part 2

Disclaimer!  This post is continued from here.  Probably makes sense to read that first before jumping into Part 2.

One of the first PATHs I remember was Kathleen’s.  You remember Kathleen’s story from here where she writes of her PATH with Katie.  Kathleen had a full room.  Admittedly now, it was of paid staff, and family members, and other people with disabilities.  We’ve gotten better over the past two years of understanding why the invitation to others too is so important.  But there was a shift immediately felt.  Overnight, Kathleen went from being someone defined by disability to someone with goals and plan of how to get her there.  Her parents saw her a little differently, she saw herself a little more realized.  I think of the staff that attended, we saw a clearer picture of what our time together could really be about.

Kathleen’s PATH. You can see how different (plain) the PATHs looked back then. Since we’re being honest, I also thought pastels and shading were hokey. I’m happy I changed my mind on that issue, too!

And we saw this, for the most part, again and again with people’s PATHs.  Seeing the power of Kathleen’s dreams for herself put down on paper made it very clear to those in the room, that yes, this is part of what can help us take people’s lives seriously, and there is a different story that can be told.

Our house, 2009.

I write this to be honest about how things change.  I did buy a house in October of 2009.  A little two bedroom in Madisonville with a big backyard.

Too many tomatoes!  Actual photo from 2010

That spring, Jordan and I started tilling up the ground and planted about 4 tomato plants.  We had more tomatoes that summer and fall than we could eat.  One such plastic bag full of pounds of tomatoes led us to share them with our neighbors.  “Please, take these. We can’t eat another tomato” we told them one day when they were talking on the sidewalk.  This is how we learned Cindy’s name (two doors down), and Amy’s name (across the street), and was advised not to worry about the guy that jogged up and down the street in the middle of the night with a flashlight.  He’d creeped me out for the past year that we’d live there and it felt good to have someone say he was harmless.

October 2011

Jordan and I decided in 2010 that after 7 years of dating, owning a house together, and raising two dogs that we were ready to get married.  We got married last Fall, another positive and possible I said in my mini-PATH.

Bees.

And, believe it or not, I also sought out a person to teach me about beekeeping.  And Liz did, gracefully.  And I learned, with her encouragement, completely gloveless.  As for writing, this marks my 24th blog post on Cincibility.

PATHs started, for me, the journey of understanding giftedness and how to talk about it.  We talk a lot at Starfire about rusty citizens.  I thought I was a good person, active, involved, aware of my community before I started in 2008.  I wasn’t even scratching the surface then.  I know that 2009 was the shift that was needed.  PATHs, person-centeredness, deeply thinking about what is positive and possible changed the journey for me.  It lead me to start working actively with people in their third year (2010-2011) to find volunteer positions based on their PATH goals.  Steven became a docent at the Holocaust and Humanity museum.  Nikki a hospital volunteer at Children’s.  Ronny, an radio intern at Media Bridges.  Kathleen a childcare assistant at a church.  Mike a volunteer at the Hamilton County Republican Party (there’s a great story of how we connected there that includes fawning over pictures of Michele Bachmann and Sarah Palin.  The things you do for people you care about!), an intern at the United Way, and to help him become employed at GBBN Architects.  Krista was a photographer for the University of Cincinnati’s documenting the ZooMates program.  Justin was an assistant baseball coach for a 3rd grade team for a few weeks.  Tim, an intern in the athletic and alumni departments at a highschool school.  Brian a volunteer at a preschool a mile from his house.  Jason as a caretaker of a horse with another person at a local farm.  Lauren as a respected volunteer at the Girl Scouts, leading troops during their school day who do not have the resources to do so as an afterschool activity.  Bridget helped JC connect as a maintenance man at a local megachurch.  As it turned out, Kirk, the head of maintenance realized at JC’s birthday party some months later that they had known each other from going to the same church when JC was was a child.  They reconnected because of Bridget’s ask if JC could share his skills there.

I quoted Wolfensberger in graduate school, but finally saw what he meant by valued social roles, and how it can change the way we see people, and the way we treat people.

What was the next step?  This was the third year of Starfire U.  The fourth year was fast approaching.  How could we build upon valued roles, the five valued experiences, and put some of this into action?  How could we invite others in to see what we’ve been talking about, and join us?  How could we roll all that we’ve learned into this?

What we are called to do with each other, is to let us be who we are together.  How could we do that in the fourth year?

timothyvogt
Things Change, And That's The Way It Is -- Part 1

“I’d like to go back to when we played as kids, but things change, and that’s the way it is.” –2PAC

I’ve not allowed myself much time to reflect on the past four years, and what it means now that those who started with me aren’t present in the day-to-day.  This week is a grace period for me.  I haven’t actually had a normal full week without Kathleen, Ronny, Joseph, and others.  Last week felt like any other time that we were closed for a week: staff worked on loose ends, organizing, planning.  Then, leaving for Toronto on Friday, again, there was a quickness of moving away from the commencement ceremony.  Tim posted the back of the program which I wrote, and he and Lauren edited.  Though it’s written by me, I attempted to use a voice that was universal about how (I think) we all felt about what we’ve experienced.  But everyone has a personal story of what 2008 through 2012 meant.  Here’s a bit more personal of a reflection of the past four years.  I hope to do this in a series of posts instead of one large lengthy reading.

In 2008, I was 22 years old.  I had already failed and grown to loathe one career, the path I’d thought I went to Xavier University for: high school teaching.  I wasn’t sure what I should be doing.  Most people don’t have a crisis of identity at 22, but I did, quite real with panic attacks, weeping, and feeling utterly immobile.  Most people don’t quit their first grown up job after 3 months, but I did that too.  It felt pretty miserable.

I had a small studio apartment in Walnut Hills, a dog, a boyfriend, and for once, no real direction or understanding of what I was working towards.  I have to mention, that it was because Jordan understood how unhappy I was, that we decided quitting my job was a better decision than being constantly miserable.  We lived off of his income alone for a couple of months while I did my best to take my time figuring out what I wanted to do, albeit, quickly.  His “income” being that of a 21 year old full-time college student who moonlighted as a 3rd shift UPS employee.  We ate a lot of chicken patties bought in frozen bulk from Sam’s Club.  Someone asked me last year right before we got married, how I knew I wanted to marry Jordan.  I think frozen chicken patties and working 3rd shift to allow me to find out what I’m supposed to be explains a lot of that.  It might also explain the reason behind elaborate meals that I cook and post photos of to Facebook.  A continual thank you to him for bearing through it with me.

jord-2007-2.jpg

Jordan and I, 2007.

After I quit teaching, I managed to find a temporary position through high school connections.  I became an instructional aide in the high school setting again (not teaching exactly) and was already disgusted in my short seven months in the special education world.  I was placed in the resource room and I was working at the same high school that I went to, but had had no idea that the resource room existed.  No, it wasn’t in the boiler room or hidden under the stairs, but it might as well have been.  The only people who really ever came in were the same kids day after day, and the intervention specialists.  Everyone in the resource room had an IEP and everyone in the resource room was lumped together because of some arbitrary commonality: something was “wrong.” Ranging from 10-20 students in any given bell, with any type of problem, developmental disability, learning disability, behavioral problem,  and including “bad kids” who were sent there too because they wouldn’t shut their mouths in class, sit down, and listen.  Since I wasn’t teaching curriculum, there was a lot of talking, tutoring, and listening.  I read tests out loud.  I locked up modified tests in a little red cabinet per regular education teacher’s request so that no one had “an unfair advantage” over the regular education kids. (That still makes me laugh thinking about the ridiculous notion that special education student could have an unfair advantage in education.)  I provided extra time on tests.  I witnessed the madness of OGT (Ohio Graduation Tests) prep and the rules for exceptions.  I don’t recall the exact details but something along the lines of, if you fail to score the minimum needed for passing after three attempts, and you have an active IEP, then you’re okay and are not required to pass them to graduate and receive a diploma.  I can’t imagine the feeling of needing to struggle through five sections of such a large standardized test, and then fail the tests three times in order to prove that yes, in fact, you’re not as smart as everyone else.

In March and April of 2008, I applied for over 50 positions at non-profits in Cincinnati.  I was (and still am) sincerely interested in everything that has to do with people in our city so there were a lot of scenarios I could easily imagine myself fitting into.  A homeless shelter needed a front desk person, could that be me?  Working in Neighborhoods needed people to counsel about predatory lending, could I do that?  Pregnancy Center East needed a director, maybe I could figure that out?  A case worker was needed at Santa Maria helping people experiencing poverty link to resources in Price Hill, sure, that sounded cool.  A non-profit in Madisonville is looking for people to work in a new program for people with disabilities, I applied for that, too.

In hindsight, I couldn’t have lucked out more.  I guarantee that those who interviewed with Krista and Tim for that same position were more “qualified” than I was.  22 at the time, and quitting 3 months into one job and working 7 months at another, my resume didn’t tell a very flattering story of who I was. I don’t recall all the details of the interview, but I remember Tim asking if I didn’t have experience how I could do the job well (or something like that.)  He seemed off-putting and the question was phrased in a way that threw me off guard.  I remember blushing (I do that easily as you’ll recall from this post) and I responded that I wasn’t a black teen with behavioral problems on an IEP, I wasn’t a homeless woman struggling with addiction (I had interned at the Drop Inn Center in 2003), I wasn’t a 14 year old girl with Down Syndrome and I wasn’t a teacher anymore, but I thought some experiences were universal and regardless of background, demographics or whatever else, people were people.

In June of 2008, 25 other 20-somethings started Starfire U that year with me.  They weredefined by their diagnoses, labels, and files from high school and other programs.  I was defined by a degree and a shoddy resume.

In that first year, we (I) didn’t know what we (I) were (was) doing.  Calendars were juvenile, staff planned only, and quite honestly, embarrassing to look at now.  Tim has shown a picture of himself dressed as Santa Claus at a big dance for people (adults) with disabilities and talks about how he thought that was okay then.  It’s shameful, but it’s part of his story and I’m grateful he’s willing to tell it honestly.  The calendars of 2008 are that for me.

Parking Lot Olympics, August 2008

Parking lot Olympics with a torch made out of an umbrella? Sure!  80’s Dance Party on a Thursday afternoon?  Yes!  Mystery clues placed around the office with construction paper footprints leading to a whodunit conclusion?  Of course!  Trying on and wearing Native American dresses while a woman from Imago presents the same presentation she does for grade schoolers?  Why not?  Ice-cream social 10AM on Monday!

I would explain my days to friends and they’d be jealous.  It became a sort of sport for them, I imagine.   “So… what did you do today?” I’d be asked.  “We made cookies for firefighters.”  Or, “we made a dream catcher.”  Other staff of Starfire U could respond, “We went to Coney Island” or “We went to Ride the Ducks on the river.”  “We played putt-putt.”  You see, at that point, certain staff lead the “field experiences” (how clinical, I know) and some did “seminars.”  I, given my extensive teaching experience I suppose, was delegated to seminars.

I can guess now what my friends were thinking then.  How could someone’s career be so trivial?  They were studying to change the world through social justice, computer science, nursing, and criminal justice.  Weighty topics of importance.  I, with all my education and training, was decorating dollar store wooden picture frames with disabled people using Crayola paint and magazine clippings.

Something shifted in the first year that only distance from those early months can reveal.  If I continued to tell a story of cookies, dance parties, Coney Island, and art projects, I would also continue to perpetuate the notion that our work was silly, and meaningless.  If our work was silly and meaningless, so were people’s lives.  I honestly knew then that this wasn’t the case, but I wasn’t sure what else it would be.

I enrolled in graduate school at the University of Cincinnati full-time in 2008 and began working on a Masters degree.  I thought this was important to my career moving forward and I know now it was more for ego than for anything else.  I enrolled in the educational studies program, cultural and social factors of education and what makes some people succeed and some people fail.  It was there that I started doing some deep intentional reading and found some clues to how this work could be more than silliness and entertainment.  I read dozens of articles about inclusion models in education.  I learned about self-efficacy, and self-determination.  I read about segregated workshops originally being intended to be a springboard into community-based employment.  An article called “The Myth of Transition” described how the opposite effect has happened.  The research showed that people do not learn skills, but in fact become less employable in community positions after working in segregated workshops.  I read and wrote about the history of segregated schooling, supreme court cases like Olmstead, local laws, what impact the Americans with Disability Act (ADA) really had.  I refreshed myself on Bandura’s social learning, Zimbardo’s experiments on control, abuse of power and obedience.  I realize now that I even quote Wolf Wolfensberger in one specific research paper but didn’t fully comprehend who he was, and how much that would radically change my work in the coming year.  I quoted him in a section exploring relationships: “Social roles dominate people’s lives, and people largely perceive themselves and each other in terms of their roles. The value people attribute to various social roles tends to decisively shape their behavior toward persons whom they see in valued or devalued roles. Those in valued roles tend to be treated well and those in devalued roles, ill.”

It was evident to me then that a wealth of knowledge, theory, debate and questions around disability existed.  None of it seemed silly, or trivial.  None of it had to do with fun activities.

Cover of Amusing Ourselves to Death

amusingoutselves.jpg

If entertainment was our purpose, it would also be our outcome.  I had read in high school with my then English teacher Jason Haap, Neil Postman’s “Amusing Ourselves to Death” alongside George Orwell’s 1984, and Aldous Huxley’s Brave New World.  I think back on Postman’s writings frequently, especially in the context of taking people’s lives seriously, and the role of entertainment in our life.  Was my role to entertain people, give them happy memories, pat myself on the back and call it a day?  Or was there really an opportunity that was bigger here to affect change in the story told about Down Syndrome, Cerebral Palsy, Autism, and all the other big box names we give to disabilities.

Postman writes in Amusing Ourselves “Everything in our background has prepared us to know and resist a prison when the gates begin to close around us . . . But what if there are no cries of anguish to be heard? Who is prepared to take arms against a sea of amusements? To whom do we complain, and when, and in what tone of voice, when serious discourse dissolves into giggles? What is the antidote to a culture’s being drained by laughter?”

Was my work drowning people in a sea of amusements?  Was it a distraction from real life?  The approaching second year was a game changer.  Bridget learned about PATHs, and lead a staff training on it to bring us along.  “we’re going to offer PATHs to all the members.”  I remember it well.  Jewell, John, Bridget and I were all in a group.  We did very small personal mini-PATH’s (the North Star conversation only on speed.)  I remember my North Star included buying a house, getting married, learning about bee keeping, starting a garden in my backyard, writing, and a few others that I can’t remember.  I was skeptical about the whole process, not buying into the hippie shit of drawing what you’re feeling and dreaming out loud, and all the other hokey stuff I thought I’d left behind from when I planned retreats.  At some point, I became embittered by it.  We gathered as a large group again, shared our North Stars and at the end of the afternoon, everyone rolled theirs up and took it to their desk.  “I’m going to keep this” someone said.  “I’d love to hang this above my desk as a reminder of what I could be.”

PATH

I’m embarrassed and ashamed now to say that I felt very differently.  I immediately crumpled it up and recycled it.  The idea of “writing something down and seeing it as an image makes it more probable to happen” was bullshit.  I was not an immediate believer in the process, and wasn’t buying that this was something that would really change people’s lives.  And who cares about drawing pictures?  Was I ever going to really learn to keep bees?  Buying a house?  When I’d just graduated in 2007 with large amount of student loan debt and was paying out of pocket for graduate school?  Whatever.   This was Winter of 2008/early 2009.

I had a lot more learning coming my way…

timothyvogt
With Gratitude

This is the back of the program from last night’s commencement for people finishing up their fourth and final year of Starfire U.  It was written by Candice, and is a beautiful way to sum up everything all of us are feeling and thinking about together.

with-gratitude-6-28-12.jpg
timothyvogt
Sticks & Stones

I got a phone call this morning from a reporter from one of the local news stations.  He wanted me to comment on the ongoing saga of Ally Bruener, a local comedian (and a fellow Campbell County High grad…Go Camels!) who has been promoting her comedy shows with some pretty provocative marketing:

crippled.jpg

The story is now on the Huffington Post and USA Today; and with her partner’s court case being this afternoon, the reporter wanted a quote.

He called and explained the story to me and asked for my opinion on whether or not it is ever OK to use the word “crippled” to talk about someone.

I asked him if he had quotes from Ms. Bruener herself, and he said that he did and he had quotes from her father as well.  I then declined to be quoted, as I told him I felt it better to defer to Ms. Bruener and her family as to how they want to talk about themselves.  He said that since he’s already got their point of view, he was looking for a quote to “balance” the story.

I pointed him to ADAPT as advocates that would probably be very supportive of Ms. Bruener’s “taking back the word,” whereas other advocates might not.

He then asked me if I would ever use the word “crippled” myself and I told him that I wouldn’t, just as I would also not use the word “retarded.”

I told him that my reasoning for that is this:

How we speak about people reflects on what we believe about them.  And what we believeabout them reflects on how we treat them.

In other words, our language drives our actions, and if we limit our description of someone to that of “crippled” or “retarded” or “handicapped,” then we are limiting our thinking about them to one very narrow aspect about who they are.  And if we let that narrow label define their life, we perpetuate a perception that permits the world to isolate them, take away their rights, and do all kinds of things that most of us would find intolerable.

I didn’t get into all of this with him, as he expressly asked for a soundbite.  Can you imagine fitting all I’m writing here into a 2 minute news update?  He told me how tough it had been for him to get anyone to speak on behalf of other people with disabilities on this issue.  I told him that it was impossible for me or anyone else to “speak on behalf” of the 8,000 people with disabilities in Hamilton County and that I thought it was for each of those people (and their families) to speak on their own behalf.  I apologized for not being very helpful and acknowledged that it was a nuanced issue.

If you read all the comments in the articles and by commenters, you’ll see the truth in the issue, at least for me:

–It is her right to use that word how she sees fit, however distasteful it may be to others.

–That word and others like it (retarded, handicapped, etc.) are not helpful words.  They create barriers between people with the label and those without.  Those barriers lead to most people with the label being treated pretty poorly.

–The marketing was extremely successful, and I imagine most comedians would kill for the free publicity she’s getting out of this.

–Arresting people who make us uncomfortable doesn’t seem to be the way to go about building a more just and caring society.

That doesn’t mean that I approve of using words like “crippled,” “retarded,” “nigger,” “faggot,” “chink,” or “kike.”  Marketing for shock value or advocating by “taking back the word” doesn’t let me or Ms. Bruener or you or anyone else off the hook for being respectful, thoughtful, and careful with our language.

That also means I run the risk of being branded as “politically correct.”

Can’t you just hear it?  “Here come the word police again!”

But here’s the deal:  until you (or people you love) are on the receiving end of one of those labels, you cannot imagine the hurt it brings.  And my guess is that even if you’re “taking the word back,” you’ve been hurt by it, as have millions of others both living today and in the past.

So why perpetuate it for a few cheap laughs?…unless you’re in the business of getting a few cheap laughs, I guess…

timothyvogt
Be Hopeful

Ronny sat behind my desk for months with a red drum between his legs.  A bungee cord wrapped around the drum and placed behind his back to keep it in place.  In the morning before a seminar, during lunch after he’d eaten, at the end of the day waiting for his ride, he’d sit there.  bum, bum, bee, bum.  Sitting behind my chair, I’d hear the thumping.  Responding to emails, working on credit card receipts, in the background of the mundane office tasks there would be the constant, bum, bum, bee, bum of Ronny and the red drum.

Ronny welcomes everyone to Be Hopeful

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I’d answer the phone, be in the middle of a conversation and hear that persistent bum, bum, bee, bum.  Ronny, drumming.  At one point, I begged him to stop practicing behind me.  “Ronny, please…can you do that anywhere else?”  He smiled and in his voice, “Man, I gotta practice.”  He allowed me to move the drum to the Commons one day and he practiced with a small audience at lunch.  The next day the drum was behind my desk again.  Ronny came in in the morning, sat down, affixed the bungee cord around himself and the drum and bum, bum, bee, bumbum, bum, bee, bum, bum, bum, bee, bum, bum, bum, bee, bum, bum, bum, bee, bum, bum, bum, bee, bum.

It became a funny thing, and inside joke that constant drumming.  Ronny would laugh when he came back to practice and when Kathy or I responded to a particularly annoying email or got off phone call that was exceptionally frustrating, we’d walk past and bang on the drum ourselves.  Kathy would walk past and bum bum bum, bang on it.  I’d wrap up credit card receipts which always take longer than I hope and bum, bum, bum on the drum.  Ronny continued to practice.  In addition to the drumming, there was also a chant.  Hey, yay, yay, yay, yay.

“Ronny, please.  Can you sing something else?”  And he’d respond, “I have to practice….Heyyy, yay, yay, yay, yayhey, yay, yay, yay, yayhey, yay, yay, yay, yay.”

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Ronny, center with the red drum. Baoku, right, Chelley, left of Ronny.

On Saturday, after months of hearing the repetitive drumming, the repeated bum, bum, bee, bum and Ronny’s deep voice singing hey, yay, yay, yay, yay on constant replay, Be Hopeful premiered at the Cincinnati Art Museum.  I’d been in the office late a week or so before the premiere and got to glimpse a rehearsal in action.  It looked as all rehearsals do a week or two before a performance: people holding scripts, asking questions, a director pointing to a place where a performer ought to be standing, but it was full of energy, people smiling, dancing, drumming, laughing, singing.

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Katie Bachmeyer wrote an excellent article for Be Hopeful on Cincinnati.com.  It read, “Movement, beats, and powerful vocals collide next weekend during the live performance of ‘Be Hopeful.’ Audiences can expect a lively, soul-quenching hour of African drumming, Colombian dancing, and spoken word from an eclectic group of artists who want to share their story of hope and freedom… “It’s a story about who we really are,” said Ronny Edwards, Mt. Healthy resident who is co-creator of the event. “Not just who you see when you pass each other by on the street, but who we are as people.”… For the project, he teamed up with the head of The Image Afro-beat band, Baoku Moses. Together the two gathered a group of over 20 professional musicians, dancers, and spoken word performers to bring life to Moses’ choreography and words. “My people say that when we lose hope, we lose life. Hope represents life itself,” said Moses, Nigerian-born writer and director of Be Hopeful. “What has come out of this project is brilliant, with so many artists coming together from different backgrounds, it has ended up being magical.” Moses said the performance is for all people, genders, ages, and creeds, and especially those who have lost hope and are searching for something to believe. They chose the first showing to be held at the Cincinnati Art Museum on a day of free admission, as a way to draw families and a diverse, wider audience. “We always look for ways to represent all segments of our community,” said Emily Holtrip, director of learning and interpretation at the Cincinnati Art Museum. “Be Hopeful is right along with our mission to become even more inclusive and welcoming.” Along with Moses and Edwards, the cast includes professional dancers from Pris and Columbia Viva, along with artists from the socially conscious rap group T.R.U.  “

Katie told people to “expect a lively, soul-quenching hour.”  I had no idea how right Katie was.  You can watch a sample of the performance here.

Tim’s post of 51 People is the bleak reality of many peoples lives.  Sitting as an audience member on Saturday, I cried watching Ronny, the dancers, listening to Baoku sing, hearing the spoken word poetry, seeing Jai All Day be a presence as the emcee for the event.  Brandon, who had help Ronny with his capstone the past year, performed about the strength of people being together.  He held up a single sheet of paper and ripped it, easily down the middle, and talked about how by ourselves we are weak, easily broken, discarded.  He then held up a whole notebook, trying to rip it in half, it was evident.  If the paper equals people, together we are stronger.  And there is hopefulness in more pages coming together to tell new stories.

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Brandon attempts to rip the notebook

Ronny’s voice by himself, the hey, yay, yay, yay, yay wasn’t bad.  But his singlular voice didn’t carry the message that Saturday’s performance did with many voices harmonizing, joining in, singing out, being hopeful.  The one beating drum bum, bum, bee, bum didn’t have the strength of three.  One dancer on stage doesn’t have the power of 10.

There is hopefulness in bringing people together.

If you missed last Saturday’s performance, there is another happening this Saturday, June 16th at 7:30PM at New Thought Unity Center. Suggested donation is $10.

If you were struck by Tim’s post and aren’t sure what to do about it, attend this performance for starters and see what it means when people come together and begin to recognized everyone as gifted, talented, and a part of a community of hopefulness.

timothyvogt