Who will we sue when we discover
That our privacy has been protected
By the fact that no one knows us?
Which insurance policy will
Cover the cost of our jobs
Monitoring each other’s performance?
What procedures should we follow
When we hit the dead end
Of unlimited fear and imagined tragedies?
Whose permission should we ask
To do the right thing?
Who makes the rule that requires
Our hearts to recognize freedom?
When do we get our license for love?
Who will second this motion?
A guest post by Patti Schaefer
I had the privilege of being invited to a Good Life Network meeting by Patti to hear the story of how the Schaefers went from being a West Side family, to living in the East Side of Cincinnati. I asked Patti if we could share her story here on Cincibility:
This journey began on the West Side of Cincinnati.
After Chris finished high school he worked at Oak Hills School on the Grounds Crew. Chris’s dad Ron and I began thinking of downsizing our home in Delhi and also wanted to provide Chris with an opportunity to have his own section of our home to practice independent living skills.
We moved into a lando-minium in the Miami Heights/Cleves area of Western Hills. It was pretty remote and very hilly. At the time, Chris had a job, lots of contacts and enjoyed many social outlets.
Chris had his own living area in the new house that included a sitting area, an efficiency kitchen, bedroom, bathroom and laundry room. With some help, Chris became very good at maintaining his area and a real “whiz” at doing laundry….! Believe it or not, I think the laundry room was Chris’s favorite part of his living space, except for the TV of course. He would even offer to do his friends laundry if they cared to bring it over.
During this time we discussed what we wanted the future to look like for Chris as far as housing was concerned. There was a group on the West Side that intended to build a community type setting for individuals with special needs. The area where it was being considered to be built was near our home, Chris’s job, and was in a good area of town that offered shopping and possible social outlets. At the time we thought this might just meet Chris’s needs when he was ready.
Not long after our discussion, things began to change. The Oak Hills School District, as many other organizations and companies, began to downsize. Chris left his job and, at about the same time, his contacts and social opportunities began to go away as well.
We knew the living facility that was in the planning phase in Western Hills would probably be built, but we were beginning to feel that it wasn’t going to be finished in time to meet Chris’s needs.
Without all of the above, we began to see Chris become lonely and somewhat isolated. Ron and I started attending anything we could concerning housing for individuals with special needs. We got a lot of good information, but also began realizing that we couldn’t count on government waivers to always be available to help us with housing.
After Chris left his job, he began attending Starfire in Oakley. Their program tries to not only include their participants in the community, but they try and wrap the community around the participants.
Between what we had learned in the Housing Sessions and Starfire we began to rethink our situation.
We asked ourselves….”If Ron and I weren’t around anymore, what would life be like for Chris in our current neighborhood?”
We began talking as a family to see what we would like for Chris as an individual living on his own. Here are a few things Chris, Ron and I came up with. Not just any housing, but housing that will allow Chris:
* To continue the lifestyle he is accustom to and/or how he chooses
to live.
* To live in an area where he feels safe
* To have an opportunity to have one or more roommates or building-mates
* To live in an area where he can use public transportation or be able
to walk
* To live in an area where necessities are easily accessible, such as
grocery stores, restaurants, department stores & social activities
* To live in an area where he already has friends with opportunities
to make more friends.
* To continue to be able to connect with his community.
* To live in close proximity to maintain family connections.
We realized in order to get all these things……..we’d have to move. And for Chris and my husband, who neither had ever lived outside of Western Hills……
This was quite a huge idea to wrap their around.
We started looking at neighborhoods in October of 2012. We centered on the Oakley/Hyde Park areas as they met most of our criteria and already had a few living situations that Chris could be put on the waiting list. These neighborhoods also have apartments and two family homes.
We looked at homes weekly through March of 2013 without finding anything that would work for us. In April we thought we’d better widen our search area.
One Sunday in early April we were scoping out new neighborhoods to consider and stopped at an open house in Blue Ash. It was the first house we’d seen that felt like home as soon as we walked in. We put in a bid and among the six other bids received that day ours was the one accepted. I might share with you that I’m now a firm believer in HGTV’s strategy that a heartfelt, hand written letter to the owner attached to an offer DOES work!
If you are thinking we were crazy……believe me, so did we. We were in a bit of a fog for several days not sure if it was due to buyer’s remorse or just sheer stupidity. AND, we still had to sell our home in Western Hills.
Once we were able to go through the Blue Ash house again we realized, to our “great” relief, that it had everything we needed for a living situation and more. And, the neighborhood seemed perfect. Flat sidewalks, an easy walk to downtown Blue Ash and several people who lived close by that also attended Starfire with Chris.
It certainly looked like a good place to continue our journey for independent living for Chris. The other great benefits were my mother is only two expressway exits away and now we drive 45 minutes less to visit our daughter and her family in Columbus.
As it turned out, we were able to sell our Western Hills house in about 45 days and moved into our new home on June 10th, 2013. Just twelve days after the birth of our first grandson. It was quite a whirl wind time!
In a little over three months after we moved into our new house we purchased bikes, rode the Loveland Bike Trail and enjoyed pedaling on our now “flat” street. Chris is planning to hook up with a biking group and he’s been included in several events. In the near future, we are meeting with a family that may serve as a community connector for Chris.
And, we attended a block party and got to meet most of the neighbors on our new street.
In hindsight, Ron and I think he and I had also gotten in a rut in our old neighborhood. There was a certain comfort level there with friends and the fact that we had lived there so long. We weren’t venturing into new situations. We’ll definitely still see our old friends. People from Western Hills are used to driving wherever they go, so a jaunt across the viaduct is no problem.
But, now we are taking our clues from Chris. We are getting out and engaging with the community more so, hopefully, we will also have a successful quality of life as we grow older.
Was all this difficult? Well, I won’t lie. It was a lot of work. It still is a lot of work. But, having the potential for a happy, successful, independent life for Chris made the move more than worthwhile.
And while we by no means think we have all the answers yet, we do feel, for us, we’ve made a good, new beginning and are building momentum.
Chris & Friends on the porch of our new house at a meet-and-greet…over 30 people showed up!
The story Ben told was important. They made the trip up 75 North to Ikea. She’d recently moved into her own apartment, and as Ben described it, she had very little “things.” The apartment was barren, Ben recalled to us, no personality, and it didn’t look like someone had just moved in.
Sure, she had a bed and a few dishes that her staff’s agency likely provided, but other than the bare bone basics, her apartment didn’t have stuff. Ben mused aloud the difference between materialism and the needing things of one’s own, as if to justify going to Ikea with her. We all nodded, and I got what he meant. She didn’t have things, not like most of us do. She didn’t have the things that make a house a home– no artwork on the wall he said, no pictures of family and friends on side tables, no knickknacks of any sort to decorate the space. She did not have the kind of things that we tell stories about when people come over to our homes and remark “how interesting!” or “that’s darling!” about our things. She did not have things to tell interesting stories about in how they were acquired, where they came from, and what they mean.
So they went to Ikea, the place where people can spend hours daydreaming about how to change their drab space into cozy abodes with soft lighting, patterned comforters, throw pillows, and the kind of stuff that makes a house feel a little homier. Ikea is the place to go when you want to dream about the place you wish you lived in (and do so on the cheap). Stepping into any perfectly designed showroom, one can walk in and out of the types of moods you’d like your space to reflect. Edgy and modern? Shabby chic and all white? Cozy and homey? Ikea has it all laid out for you in aisles and aisles of fake living rooms, dining rooms, bedrooms, kitchens, offices and playrooms.
Ikea catalog bedroom
Ben continued that he wasn’t sure if it was okay that they’d spent some of the budget at Ikea, but she really enjoyed picking out things for her apartment, things that would be hers. Some Ikea artwork for the walls, he said, a clock. Most of us don’t think buying a $3.99 clock from Ikea to be a great memorable experience, but it was for her.
People hold on to things like gifts, and pictures, and antiques, and other heirlooms from family. They mean something, a connection to our roots, a tie to family members, a token of our belonging to each other. She, it was obvious to Ben, didn’t have those kinds of things. She didn’t have the precious kinds of belongings that tie her a belonging.
What the outside world would see as junk, things we would just as soon pitch in the weekly trash, she sees as hers. These are the things she can keep, things that have meaning, when not many things in her life do. An old foam beer koozie is sometimes worn as a bracelet, an inflatable alien toy from a carnival or festival she must have attended once decorates her neck sometimes, a cheap bracelet from a quarter bubble gum machine at a restaurant adorns her wrist, old RingPop rings are still worn as rings–the candy long gone, all treasured items that are hers, and hers alone. It’s clear that she doesn’t have much and never has, given what she clings to and carries with her.
In winter she’s been known to wear more clothing that necessary, likely because she grew up in a house frequently without heat, or in the type of situation that might bring eviction at any moment. Better to be ready and have your stuff with you, than to return home and see it sitting on the curb piled in trash bags waiting for collection.
What makes a house a home is more than just stuff. Looking around my house there’s a story attached to most of the items I have. The dresser that I use my husband and I found in Clifton. A couple was moving and didn’t have the space. As they carried it down the sidewalk, we asked if they were leaving it behind. They said, yes, unfortunately, they had no space in their new apartment. It was carved juniper wood with delicate scroll work and ornate brass handles. We took it giddily and it’s held my clothes for over seven years.
Dining Room
The credenza and hutch in the dining room belonged to my father’s grandmother. My mom used them for awhile until she replaced them with her own mother’s furniture. The mantle in my baby’s room was the original mantle in my grandmother’s house. The painting in the living room was done by my brother-in-law when he was a budding young artist in high school. His parents were giving it away when they sold their house. He’s now a professional painter and professor of painting at Tulane University. The billy balls and wheat sitting in the vase were from my wedding bouquet. Three years later they look the same and remind me of that beautiful day in October. There are pictures on the fridge and magnets holding up save-the-dates, sports’ schedules, birth announcements and thank you cards. The cedar trunk upstairs was a Christmas gift from my in-laws, and it holds afghans my grandmother and great-aunt made in the 70s, yellows, orange, and brown weaved together. On the bookshelf there is a large sample of my favorite books all of which I’ve read and meticulously never dog-eared; there are framed homemade artworks like the macabre birthday cards I made for my husband’s Halloween birthday, a stained glass window that someone gave me as a present, a picture of my grandmother the year she died and a picture of my sister at her high school graduation. Two guitars hang on the wall that my husband takes down nightly and strums.
Each item is ours and most have a story of how they came into our home. I know it’s all just “stuff” but it’s the stuff that’s important to me, and the kind of stuff that makes coming home comfortable and personal. It’s the kind of stuff Ben recognized she didn’t have.
So she has her first apartment that’s her own (as much as it can be her own when a sister is a roommate and there’s 24/7 staff of rotating people). Ben knew he couldn’t give her antique mantles connecting her to her family’s past, or photographs of her family and friends from wonderful vacations and parties past, or the possessions we all have that makes our spaces ours, but he could help her find a few items that she picked out herself, her own belongings, to put in a place, where perhaps one day, she’ll feel she belongs.
…It’s an un-conference! Don’t forget to come next week and be part of the 3Day, Starfire’s 3rd annual “un-conference” – where YOU and everyone else set the agenda together. The first night is the kick-off, starting with dinner — followed by us creating the schedule together by filling in one big blank canvas, like this one:
…What the next two days of the conference will look like is unknown! Well, not entirely unknown. We DO know there will be dinner each night, and lots of people from around the city sharing their gifts and passions. The rest depends on you taking the chance to be part of the most unique 3Days you’ll have in Cincinnati all year!
Check out our website for more:
Oh, and Listen to an archive of our interview on 91.7 WVXU – you’ll hear Tim, Leah and Megan give a complete rundown of the ideas behind the 3Day, a few logistics, and a sneak peak at some of the presenters we know will be there.
Starfire’s free “un”-conference helps connect people and battle isolation
Listen
Imagine if Carl Lindner never tried an ice cream cone. That intriguing thought is put forth by Starfire, a local organization working to build better lives for people with disabilities, as it invites people to its third-annual Starfire 3-Day ”un”-conference. The free event starts off August 26 with a blank schedule, which is filled by guests offering classes and presentations on a variety of topics. Joining us to discuss the Starfire 3-Day, how it brings people together and helps fight the social isolation many people feel these days, are Starfire Executive Director Tim Vogt; Marketing and Events Director Leah Addison; and Board Member Megan Selnick
“By the end of the year, though, Jamie had lowered his sights from “marine biologist” to “marine biologist helper.” And by the end of eighth grade, when we met with all his teachers and aides and paraprofessionals to go over the Individualized Education Program that would chart his way through high school (good news: the high school French teacher agreed to have him in French 1 for two years and French 2 for two years!), when he was asked what he might do for a living when he graduated, he said dejectedly, “Groceries, I guess.” I’m not sure what I would have felt that day if I had known that he would have to settle for less than that.” Full article here
As Starfire has started to dip our toes in some cases, and jump in headfirst in others into what meaningful work works like, this article hits a lot of the barriers when it comes to employment. A few places in the city that we’ve met with, carved a position, or simply applied has seen the value of hiring a person with a disability, and they are a part of a small change to the story of employment for people with disabilities.
Ruth’s Parkside Cafe recently hired Andrew, a self-taught culinary magician to assist with Saturday morning preparation. His first shift was a few Saturdays ago, and a few of us shared first day advice: some comical, “Don’t rave about how great the other restaurant up the street is while you’re there” to practical “Do you have nonslip restaurant shoes?” “Make sure you introduce yourself to your coworkers when you get there.”
Mike has worked for GBBN for almost two years now, as they continue to invest in him as an employee even when he has days when he’d rather be a college basketball coach, or an actor, or something else entirely than their employee. It’s quite a change from his nearly eight years at Outback Steakhouse, a job he worked after high school and during some of his time with Starfire, a job that frequently upset him with immature coworkers and their lack of professionalism. It takes a little help now again from Starfire to check in at GBBN, get him back on track and help him refocus his energies.
Douglas, you’ll recall, applied at Eli’s Barbeque because staff at Starfire recognized him as a foodie given his tasty packed lunches. He had experience in food service previously and lived a few miles up the hill from Eli’s. What started as Saturday evening shift bussing tables, has grown into a Tuesday afternoon shift, a budding friendship with a coworker, and the additional role of band hospitality. “Douglas works on busy nights…Saturday nights which are ridiculously busy. Customers ask if Douglas is working…” Douglas has someone check in with him too and helps him navigate any issues that might come up at work.
Josh spent much of his senior year at Starfire with Leah job hunting trying to get back into the restaurant/bakery business. He now has an internship with Donna’s Gourmet Cookies downtown, and a paid position at Jason’s Deli. Roles that fit his interest of baking and serving others, as well as his experience of having worked previously in bakeries.
Zak was recently hired on at Dunham Recreation Commission. Michael is still employed with both 50West and MadTree Breweries. Each of these people have some time set aside to have someone coach them at work, help them learn new tasks, or work on mastering their job duties. And it works, for the most part.
It’s evident that there are people and businesses willing and able to see the value of a person with a disability’s contribution, though the barriers to employment are real and often difficult to overcome.
“Whenever we talked about his employment prospects after the age of 21, we reminded Jamie that he did not want to live a life of watching YouTube, wrestling videos and Beatles Anthology DVDs in the basement. He always agreed; the idea of watching YouTube in the basement was preposterous.”
And yet, we know many, many people whose day to day life includes YouTube watching, or DVD watching, or television watching to fill the hours. I cannot count how many times in someone’s PATH, that someone’s interest, the great positive and possible of what a “good life” might look like, was suggested to be television watching, proof of imagination being stifled when it comes to what a person with a disability could do, could be, might be able to accomplish with a little luck and a lot of hard work.
“But I look sometimes at the things he writes in his ubiquitous legal pads when he is bored or trying to amuse himself — like the page festooned with the names of all 67 Pennsylvania counties, written in alphabetical order — and I think, isn’t there any place in the economy for a bright, gregarious, effervescent, diligent, conscientious and punctual young man with intellectual disabilities, a love of animals and an amazing cataloguing memory and insatiable intellectual curiosity about the world?”
A little luck, and a lot of hard work is a typical experience for anyone job searching. When it comes to people with disabilities, whose skills may not be as easily explained in a typical resume format, and who can often do some parts of a job description, though not necessarily all parts, this changes the game a bit. Surely, there are more places in Cincinnati like Eli’s, and Ruth’s, and GBBN and Dunham and MadTree who are willing to work with a person to figure out how they fit, figure out how they can contribute to business, and places that value their contributions over the long term.
It is easy to understand why my husband prefers to walk the streets bearing the names of old trees: Maple, Oak, Beech, Chestnut Street. The lawns are mowed weekly with a chessboard pattern, each house is updated and beautiful, all in similar style. It helps that there are lots of trees lining the winding, clean streets, giving a shaded path for two dogs and leading the way for two parents with a three month old in tow. We can walk for a mile or more and not have anyone on a front porch or in a front yard say hello or raise their eyes to greet ours.
More often than not, I oblige, enjoying a cool, shady walk as much as the next person (and admittedly, fawning over the English tudors we don’t live in). But, when I get my way, I prefer a different route.
We walked down Bramble to Winona, to Verona, to Castle and found ourselves in front of a house we had looked at last summer. I have an impractical soft spot for historic houses that are in need of love, and modern utilities. The sight of stained glass windows, scrolled woodwork and original brass hardware has me immediately overlooking shoddy electrical work and suspicious mold as I swoon over what it would look like to restore the built-in fireplaces and strip paint off original hardwood floors. The house was built in the late 1800 with scrolled cornices on the porch still intact, and a big windowed covered porch. At the time, the house was in need of, among a thorough cleaning, new box gutters, an updated kitchen, and an updated bathroom (one that did not include carpeting).
As we walked past I said to my husband, “I want to ask him about the bedroom!” Unfortunately, the man who had apparently bought the house was on his cell phone, watering the lawn that could have been mine. We continued walking past, staring at the ladder against the house, box gutters currently being repaired, it seemed. He hung up the phone just as we were passing his fence line, and I went for it.
“So…” I yelled, wheeling the stroller backwards approaching his yard. “Did you keep the mural in the bedroom?” I smiled and he immediately laughed and answered, “Sadly no. We painted over it, but not before documenting it!”
The mural in the bedroom was a Hells Angels biker adorned in black leather and a red bandana, riding his Harley through a field of orange and yellow flames. It covered the wall in the master bedroom.
We talked for in the street about the neighborhood, the biker’s lair he had purchased and another neighbor, a bouncy dog and a very hip-dressed six year old girl joined as well.
The following week we walked Bramble, Windward, Marietta, observing a spirited basketball game at Bramble Park and encountering the mom of a former student my husband had coached in volleyball years ago. “She got into Walnut” the mom reported, beaming over her daughter’s accomplishment. “The only one in her class to get in.” We congratulated her and my husband recalled how he never scored well enough in math to get in. “She said it was easy!” the mom laughed. “I’m gonna be back in 7th grade myself, trying to find x!” We all reminisced how little we’d retained of middle school math, wished her luck, and then we made our way through the neighborhood.
A few streets up, Jim stood up on his porch and waved at us. He had gotten involved in the Brew Review project and coincidentally bought a house next door to my husband’s aunt and uncle. We waved, smiled, and caught up briefly before making our way back home.
While the route my husband prefers is shadier, and passes by nicer houses with nicer landscaping, I prefer the route littered with people: ones who say hello and stop and chat for a few minutes abut biker gangs and children versus the quiet and immaculate English tudors where we nary see a soul.
“Gone are they, the days of coming by with chicken noodle if you were sick. Now I would rather send you an e-cauldron of broth via Facebook.
I have no humanity left. … I text before I speak in the morning. And the dawn is interrupted by the illumination of my cellphone. And I know that God is upset with me.
I am dying to live again.” Azure Antoinette Full video of her spoken word performance here
_____________________________________________________________
As predicted she wakes every 2-3 hours (once or twice she teased with four; her sense of humor dark) though optimistically I say each night before bed to my husband “tonight is the night. I can feel it. We’re gonna sleep FOUR hours straight again tonight.”
And we don’t, and we didn’t expect to. Of course, like we knew would happen at 11:49PM, or 2:10AM, 4:37AM, or God forbid, twenty minutes after we’ve just fallen asleep, we awake to the bird calls of a five week old baby girl. I check the time on my cell phone, and stumble from bed to crib, phone still in hand.
Her feet kick wildly signaling her anger as the quick chirps she began with have turned to real tears welling in her ears preparing to make the leap down her brand new cheeks. I scoop up the little one, settle in the rocking chair and calm her down. She nurses quickly, angrily at first, for my delay in responding, and then settles down. Seeking not only her fill for a tiny belly but the comfort of her mama’s arms, a familiar scent and face, and the gentle sway of the chair.
M’s feet
Once positioned, I reach for the phone again and begin scrolling through the feeds. New York Times, Facebook, Instagram, Huffington Post, obsessively check email…anything really, to keep a connection to the outside world during these twilight zone hours I’ve been keeping.
During one late night evening feed, in my usual seeking of connection, and conversation pieces, I read the above passage and paused at the line “I text before I speak in the morning. And the dawn is interrupted by the illumination of my cellphone.”
As I seek connection through the feeds, the baby in my lap seeks connection too, and is often interrupted by the illumination of a cell phone on her mama’s face.
Since then, I’ve made a conscious effort to scroll less in these moments, and be present more. For these little eyes are looking for connection, and what’s she’s seeking, real human interaction and connection, won’t be found in a newsfeed. I won’t find it there either.
Look up from your phones. Or else, we might miss little things like this:
M looking for me
Recently, I’ve been trying little “faith experiments.”
You can probably guess, then , that I was raised Catholic, so I wrestle with what/how to raise my children spiritually.
Recently, I had been noticing that whenever I went to Mass, my thoughts wandered all over the place. They floated into the past, into the future, around work, family, what the people in front of me were wearing…Essentially, my mind was on most everything but Jesus, God, or faith.
So I decided that one Sunday morning, I was going to walk to Divine Mercy on Taylor Avenue in Bellevue, and just read the Bible without actually participating in Mass. My thinking was that I could still be present in the church of my upbringing, and practice mindfulness of spiritual presence without the distractions of the Catholic “rigmarole” of rote kneeling, standing, responding, etc. (My friend Sonny says that the point of that “rigmarole” is to actually bring mindfulness, and he’s probably right in this, but it wasn’t working for me.)
So one Sunday in June, I set out with my Bible and an article that a friend I respect and admire had emailed me a couple weeks prior. I read his email briefly, and noted that the article he was recommending had something to with “Spanish Jesuits” and our shared work around inclusion. It sounded interesting, so I printed it off and took it with me that morning, without having any clue what the article was about.
I got up and headed down Center Street, carrying my Bible and this article. As I approached Taylor, I heard a man and a woman speaking loudly at each other. As I crossed the street, I saw a man walking his dog. He said “OK, 123 Taylor? Jim? Got it!”
I couldn’t see the woman at first, but as I crossed the street, saw that she was laying on the sidewalk, obscured by a parked car. She was saying something like “I’m alright! Just get my boyfriend, Jim, at 123 Taylor. He’ll help me.”
The man tried to get her to sit on a nearby public bench, but she waved him off.As he walked toward me, I asked him “Is she alright?”
“Yeah,” he said, “She just tripped on the sidewalk and fell. I’m going to get her boyfriend to help her up. He’s at 123 Taylor.”
“That’s right up the street,” I told him. It was just past the front doors of Divine Mercy. We walked for a bit together, and he complained about the lack of maintenance of the sidewalks.
As we approached the church, I said “So, do you need any help?”
“No. I got this.” He said.
“Cool. Well, thank you for doing that,” I told him, and peeled off into the front doors of Divine Mercy to commence my “faith experiment.”
I sat down in a back row, to minimize any distraction I might create by not participating in the kneeling, standing and responding.
Within the first few minutes, I noticed two things:
There is not really any way to go unnoticed if you choose to “not participate” in a Catholic Mass. I felt sideways glances, and people looking at me, as I tried to read the Bible…and even if that was only in my imagination (quite possibly), the internal judgment, at least, was there.
Also, I literally couldn’t “not participate” in the kneeling, standing, responding of the Mass. 37 years of conditioning had me physically unable to “not participate.” It was impossible to concentrate!
I finally quieted my mind enough to read a bit of the Bible, and finished a few chapters before I picked up the attached article that my friend had sent me. As I read it, I discovered that it revolved around a terrific question: How might we stand against these big systems that create so much misery for so many people?
The article went on to examine answers to that question, in the framework of the parable of the Good Samaritan.
It described the “man half-dead” laying on the side of the road. It described how the Levite and the Priest both took “a wide berth” around the man so as to avoid him and “preserve their spiritual purity.” It was only the Samaritan who took care of the man, going to great lengths to ensure he was cared for, while other supposedly holier men avoided the situation altogether.
So here I was, coming to the profound, humbling and embarrassing insight that I was the Priest/Levite, while a woman –a neighbor– was laying out on the side of the road outside the church where I was sitting comfortably, surrounded by healthy and mostly well-off people.
But what if the man walking his dog had decided not to knock? What if her boyfriend wasn’t home? What if she passed out or had a concussion before anyone got there?
I could have sat with her or helped her to the bench. I could have walked with the man walking his dog to make sure he connected with her boyfriend. I could have done about 15 different things, but instead, I was sitting here, doing a “faith experiment,” trying to stick it to the Catholic Church!
I got up, and walked outside. She was no longer on the sidewalk. So I walked down to the address she had given the man walking his dog. There was a man in the yard, and I asked him if his name was Jim.
“Yeah,” he said.
I’m being honest here: At first glance, “Jim” made me uncomfortable. My judgment was in full force. He was drinking a 40 ounce bottle of beer, a little unusual for 8:00 on a Sunday morning. He had cutoff jean shorts on and wasn’t wearing a shirt, which showed off a lifetime of tattoos and big scar on his chest….And he had a mullet.
“There was a woman who fell on the sidewalk…” I started.
“Oh yeah!” Jim said, enthusiastically. “That’s my girlfriend. She’s OK, she’s right in here! Come on in!”
“Oh, it’s alright,” I began. “I just wanted to make sure she was OK…”
“Come on in,” he insisted, and walked me into their living room.
He introduced me to “Linda,” who was sitting on the couch with bloody knees and bloody elbows. She was smiling and laughing about her misfortune, but insisted that she was OK. Jim had put neosporin on her cuts and cleaned her up. We chatted for about 20 minutes, and promised we’d continue to see each other around the neighborhood.
That morning was a gift to me. I met two wonderful people in Jim and Linda, who my life would not typically overlap. And I witnessed a man, who was just out walking his dog, take the time to take care of someone lying on the sidewalk.
But the greatest gift I received was more like a smack to the forehead. I had been asking “where is my church?” and I found part of my answer in passing up my responsibility and opportunity to take care of a woman lying on the sidewalk. I let the suffering of a neighbor play second fiddle to my desire to be “closer to God” or “spiritually strong.”
Hmmmm….I wonder how many other ways I do this on a daily basis. I am often so preoccupied with what I think needs to change or get done, that I miss the good that I could be doing in the real, local and present moment.
The title of the article my friend sent me is “Taking stock of reality, Taking Responsibility for Reality, And Taking Charge of Reality” by Jose Laguna. Click that link for a copy to read. It’s well worth the time.
The title alone is provocative: How often am I thinking about what everyone else “oughtta do” and neglect the reality in front of my face? How many chances have I wasted to take charge of things in a tangible way?
I’ve since shared this story with a few friends, and we laugh over the timing of the article and the moment. What a blessing.
And something helpful if you read the article: replace “Global Resistance Movement” with “Local Resistance Movement,” so as not to get too lost in the politics, theory or “elsewhere” trap that accompanies big-picture thinking.
Otherwise, you’ll miss the men and women lying “half-dead” in your own life that are calling to you to take stock, responsibility and charge of reality.
photo courtesy of Starfire Board president, Jim Price
“Tell me, what is it you plan to do with your one wild and precious life?” Mary Oliver
If you missed last night’s gathering of hundreds of people celebrating an inclusive Cincinnati, check the stories featured last night over on YouTube. If you missed out on getting involved this past year and are curious about how your wild and precious life can add something new, creative, and meaningful to Cincinnati, let’s talk. Drop us a line or give us a call.
candice@starfirecouncil.org 513.281.2100 or leave a comment below.
Annual Celebration
Tomorrow, join us for our annual celebration. We are excited to share the stories of the people who are making Cincinnati a better place. By attending this event, you’ll learn all the ways Starfire is making our city more inclusive.
Thanks to the generous support of our sponsors, this event is free to attend, but you must RSVP so we can save you a seat!
I have given up the idea of an ideal.
I no longer envision a moment
when I’ll slap my hands together
in a satisfactory clearing of the imaginary
dust of this “job well done,”
and plop down
in my easy chair,
feet up
drink in hand
and sip
as the world sings together
all the live long day.
Except every evening.
I once heard a sage on a stage say
we draw our strength from
a secret conviction:
“In the end, life wins.”
I don’t know which end he meant–
A day?
A career?
A lifetime?
A world?
But his words settle in my glass,
and mingle with the fearful swill
of other more present whispers,
shushing them into sleepy solace
that the coming day is nigh.
thanks to Mary Pierce Brosmer and Walter Brueggmann for the inspiration
Here’s a story from Starfire’s April newsletter…
Andy is a diehard rock fan. His earliest exposure to the genre came when his sister played the Beatles for him during a tough time in his childhood. Since this year marks the 50th anniversary of the Beatles performing on the Ed Sullivan show, Andy wanted to start a project that would commemorate this anniversary, and help tie him into a group of people who also appreciate the power of rock and roll.
Recently he invited the Beatles Booster Club (or affectionately known as “The BBC”) to join his project committee. The “BBC” has been a Cincinnati fixture since 1996. Linda, the head of the group said she has loved meeting other Beatles fans.
“By January of 1966, I was totally in love with the Beatles, especially Paul, and from that day forward my life totally changed. And then again it changed…when I met all my Beatles buddies because now I have Beatles playmates,” said Linda about forming the Beatles Booster Club. “The best part is all the friends I’ve made.”
Andy has joined the BBC and will be attending their future events. On top of that, he hosts monthly rock music trivia nights (pictured above) at Everybody’s Records in Pleasant Ridge, where he has been a crew member since 2009. Next weekend, he will also be helping run a Beatles Merchandise and Memorabilia Gala with his committee. There people can sell, trade, or display their collectibles of with other Beatles fans. The event is taking place NEXT SATURDAY April 19th, from 6-9pm at Japp’s downtown.
One of the things we do to track outcomes at Starfire is to document the day in and day out. Just like a lot of places that serve people with disabilities do (and are required to do), we complete these logs as part of our job description. We are paid to do it. I’ve had to consider many aspects of documentation, as my role has been to report on effective outcomes. I’ve tried to design documentation forms that take into consideration staff time, how it aligns with our work, and perhaps most importantly: the value of these logs to the person they are being written about.
Documentation historically tells very little of the actual story, due to these considerations of convenience for staff and the need to just get it done. Typically, the most amount of writing you’ll see in logs is when something goes wrong. That’s when the full story comes into play. But on “good” days it might look as simple as this: “5pm: John sat on couch watching TV. 6pm: John got up to microwave dinner and took medication. 7pm: John sat on couch watching TV. 8pm: John took a bath. 9pm: John prepared for bed. He had a good day!”
I have to say that after months of reading logs like this at a previous job I had as a caregiver, nothing I read made me proud to work at the agency. Things began to feel flat, the exact opposite of why I got into this work to begin with. People’s lives aren’t supposed to be flat, and we work with people! Another unsettling part was how the person being written about never read their own logs, or contributed to the narrative in any way. For some people, staff were even instructed to wait until they were in bed or out of the room to write the logs (as it would upset them to see staff writing about them).
Harkening back to our March newsletter post, I’d like to share some of Starfire’s documentation. This was written as Megan’s journey to a life she imagined (the first story in the newsletter) began to unfold. Michelle, a staff person at Starfire wrote these (MR), and you can see her enthusiasm and support for Megan as she and Brenda (Megan’s “connector” or bridge in the community) work to find a food pantry near her home where she could volunteer, to find work with the elderly, and continue making friends at the Rec Center near her house where she takes Zumba classes.
Dec 9 Brenda has decided to be Megan’s connector! – MR
Dec 11 Spoke with Megan’s mom about her opportunity volunteering @ the community rec. center –MR
Dec 12 Megan showed me around her neighborhood. I saw her house & where the rec center is. She will be able to walk there once the weather warms up! – MR
Jan 8 ** New Connection: Judy at the neighborhood food pantry. ** Brenda, Megan, Becky & Matt explored Megan’s neighborhood and came across a small food pantry. The lady there showed much interest in Megan, saying she’d like to “pick her brain” on her experience working at CAIN! Megan is on board for working there every week if it can be worked out with her mother & her service facilitator. I see GREAT things coming her way. –MR
Jan 14 Megan will be volunteering at the community rec. center every other Tuesday assisting with chair Volleyball. Today was her first day. It went really well! Between the food pantry & the rec center, Megan has the opportunity to make some WONDERFUL connections, right in her own neighborhood. Excited to see everything unravel! – M
Jan 30 – It’s been arranged for Megan to do a three week trial of volunteer work @ the food pantry. A woman will be picking her up & dropping her off each week. If she enjoys it enough, she will no longer be in program at Starfire that day each week & will take on the volunteer position there! – MR
I love this part: “I see GREAT things coming her way,” and all the little steps taken as they do come her way. She is “getting out” of the day program Starfire has, and finding her place in community beyond her label of disability. Megan dreamt up this life. She told us the narrative, and we supported her in living it out. Things don’t always happen this fast, or go quite as smoothly, but the important piece is still there: we are supporting people in a story that is of value to them. There are lessons along the way, roadblocks, wrong turns. But it is valuable.
I should mention here too that around the same time as all of this was happening, Megan got engaged to her long time boyfriend. We can’t take any credit for that though. Congratulations, Megan!!
Heather recently posted to Starfire’s Facebook wall this wonderful reflection about community after attending a Learning Lab in Price Hill and recognizing a neighbor at a local grocery store.
Learning Labs are monthly meet-ups to learn from local citizens. Always FREE and always open to the public! They’ve been designed for you to learn something of interest to you, or just to meet your neighbors. Thanks Heather for sharing your neighbor-run in story with us. We like hearing good stuff going on in Cincinnati!
“Community! that’s what it’s all about!”
If you’ve attending a Learning Lab in Price Hill, Silverton, Northside or the newly formed Bellevue, what has been your experience? What do you want to learn in the next couple of months? Who do you know that would make an excellent teacher in your community?
Interested in starting a Learning Lab in your neighborhood?
Drop a line to Candice@starfirecouncil.org
Each month a few of us from Starfire put together a newsletter to send out to about 2,500 subscribers. We try to make it worth the read, and we think we’re getting better at portraying our stories and our message. So we want to start sharing the stories from our newsletter on Cincibility every month, and keep you in the loop about what’s going on at Starfire. Below is our March addition, abbreviated from the original newsletter format for easy digestion! Periodically, I will also post some of our archived newsletters that you may have missed. Enjoy!
One question we’ve been asked lately is:
We think the stories in below can help people understand the “why.” It boils down to people’s value in their community. When people can be known by others while being shown in the best possible light of their gifts and passions, instead of their labels like disability, they can start to be seen as respected and valued citizens, able to contribute.
Here are a few of the reasons why one person, one family at a time is the way to go:
More flexibility to strive for each person’s unique goals
People become known as people in their communities, and are safer for it
Families can get stronger and feel more supported
Serving the person, rather than the organization’s needs, is what matters.
Start reading more here and here to learn more about Starfire’s values.
“It means getting off Starfire’s page, and onto the person’s page.”
-Starfire Board Member, Kathleen Cail
Megan and Linda volunteering together at SEM
Megan has chosen to start coming to StarfireU two days a week instead of four. This choice wasn’t easy, because as she will tell you, she loves Starfire. But Megan also loves volunteering, particularly with the elderly and at food pantries, and told us she doesn’t want her only options at the end of her four years with StarfireU to be attending another day program for people with disabilities. So, with the help of Brenda, a Starfire staff who lives in her neighborhood, Megan has found other opportunities.
First, Megan spoke to the women at SEM, a food pantry in Mt. Washington right down the road from where she lives. She told them about how she volunteered at CAIN, a food pantry in Northside as a StarfireU member. Excited to hear all about CAIN’s model of success, Judy and Linda asked Megan to join as a valuable part of their team. With her prior experience, Megan could jump right in and do the same tasks that all the other volunteers do.
She also sought out a position at the Recreation and Senior Center down the road, where she and Brenda had been attending Zumba classes together. Through her connections, she found a spot volunteering with the elderly, and even carpools to and from with the friends she has made.
As she transitions out of StarfireU’s day program to take on these opportunities in her community, Megan is still being supported by Starfire, and Brenda. The two continue to work together, finding more ways to get deeper ties in her community with the support from her family and neighbors. This is when we know leaving the StarfireU program is the best option for someone like Megan: when our work together leads to a newfound sense of belonging in her community and she is “springing” out of the world of disability day programs, into a good life.
Arlene (mom), Jordan, and Brandy (sister) at Sing! Cincinnati night
Jordan loves singing, but until lately, his experiences were limited to watching other people sing on TV at home. Now as a fourth year StarfireU member, he is working on a project called Sing! Cincinnati, based off of the Canadian group Choir! Choir! Choir!. This pop-up community choir brings together anyone who loves to sing to perform a pop song each month, even if you’re not a great singer.
All sort of singers have come out of the woodwork to join Sing! Cincinnati alongside Jordan. Many admit they never had the chance to be part of a choir before. While their regular lives are spent at day jobs at Proctor and Gamble, hospitals, and schools, joining Sing! Cincinnati has linked them into a community of people who love to sing. As one attendee, Leah Hoechstetter, commented on Facebook after their first event, “That was Total Fun!”
What should I expect?
A relaxed, playful choir lesson lasting around 2.5 – 3 hours. A song director will teach you the three part harmonies to a pop song previously selected by the group. You’ll get a song sheet with a breakdown of each harmony to help you. By the end of the night, you will perform the song together for a video that gets posted on YouTube!
How much does it cost?
The entry fee is $5 per person.
Who will be there?
Every month new people join, and some people will become regulars. If you’re new, don’t worry, it’s an open group so you’re not the only one!
What if I can’t sing?
That’s the point! This is a group less concerned with the technical aspects, and more focused on the enjoyment of singing together. And trust us, when everyone’s voices come together, you’ll sound great!
If you’d like to subscribe to our newsletter, follow this link.
guest post contributed by Kathleen Cail
The other day I called my sister and told her that most of the time, I feel like I am swimming upstream trying to build a truly inclusive community for my daughter. I told my sister that it is exhausting and it really is. I share my desires with teachers, staff, and other moms. I send information to teachers and staff about opportunities to learn more about Grace, the person, or about meaningful inclusion. These attempts often seem to fall on deaf ears. You know what I mean—the emails or messages go unacknowledged, as if maybe I’ll go away, or perhaps it’s the ostrich approach to “burying one’s head in the sand.” Occasionally though, the road less traveled is worth it and there are those golden moments, those amazing people who just like Grace for Grace.
I could have just had Grace spend most of her day in the resource room, with only special education students, but that is not what Grace has experienced throughout her school life, nor is it how she views the world. Instead, Grace is in the resource room for one subject and all other subjects she is in regular classrooms, with significant modifications. Grace is probably not learning some of the basic skills she needs, but there is no guarantee that by staying in the resource room, she would be learning some of the important things she is learning in the regular classrooms. Grace is learning to work in groups, studying subjects that interest her in a way that interests her, and more. Grace is learning social skills in the real world (for good and bad, just like her brother does). She has joined clubs like Yearbook and Key Club. Has Grace been fully embraced? No. Does Grace have girlfriends who invite her to do things on the weekends or accept her invitations? Just one and that is inconsistent. However, Grace has met a young man, with whom she went to homecoming, has seen the movies Frozen and Philomena, and has visited the Newport Aquarium. Grace and her friend are doing many of the things that high school students do. Most importantly, this young man just likes Grace and thinks she is fun. Recently, a student stopped me and told me that he sees Grace around the school and is hoping to catch her for lunch in the cafeteria some time. Neither of these young men would likely even know Grace, were she in the resource room all day.
Last week, Grace introduced a photographer at a talk. I invited every teacher and administrator in Grace’s school, and even at the district level, to come see Grace in a valued role and to hear this photographer speak about our shared humanity and seeing beauty in people who experience disability. One teacher acknowledged the invite, but couldn’t make it, one teacher showed up, and most importantly, the superintendent of schools came with his wife and daughter.
It would be great if there were one or two girls who would get to know Grace. It would be great if teachers and staff even acknowledged my attempts to inform them about Grace, or real inclusion. It would have been great if a few more teachers showed up to witness Grace introduce this photographer to over 160 adults and to hear the photographer’s important message. However, sometimes there are glimmers of hope – two young men who like Grace, because they think she is beautiful and funny, a teacher and a superintendent who show up. These “glimmers of hope” will sustain me for a while.
The stories below are what’s coming out of this year’s Collaboration Projects (follow the link and you’ll find a wonderful “How T0” on beginning your own project written by Candice). But, what exactly is a Collaboration Project? It sounds a little non-profit jargony, right? Here’s the gist:
All of our projects begin with a singular person’s passion.
They wind-up as a group of passionate people creating together.
The result, we hope, is that everyone involved feels less socially isolated, more connected, and valued for their (often simple, but unique) contribution.
And in case you’re wondering where we got the term Collaboration from, here’s a little history. The first year we launched these projects at Starfire, we called them “Capstone Projects.” It made sense because it was the member’s last year at StarfireU, our day program, and a Capstone is what many college students do before they graduate. But that sounded too final, like an “end,” when really we see these projects as a beginning to many things: friendship, creation, and imagination. And it takes the work of many. So, we re-named them Collaboration Projects, to signify the ongoing togetherness we are trying to build!
There’s another term for these projects, maybe you’ve heard of “Passion Projects.” It’s the closest definition we’ve found to our own projects that really makes sense (I’ll be quoting this article a couple more times in this post) :
“A passion project (or, a collaboration project) doesn’t mean a side business, although it could grow into one. A (collaboration project) is often an indulgence of your deep inner desire to create. A drive to bring your ideas to life, whatever form they may take.”
So, a collaboration project could be a local story slam going on at a coffee shop (Margot’s story), or a pop-up choir group happening at a bar once a month (Jordan’s story), or simply spending time with other sports fans watching games. It could be working with neighbors to start a community garden (Bridget’s story), or starting a walking club (Rachel’s story, to be continued). The point is to embrace that inner part of all of us that wants to create, and to connect:
“Create. Not for the money. Not for the fame. Not for the recognition. But for the pure joy of creating something and sharing it.”
Margot’s Story
The Cinci Story Slam project is an effort to gather local people with ordinary lives to share their experiences in front of an intimate audience. Unlike the Moth Project, a popular story slam in NYC, the Cinci Story Slam is free, and open to a wide range of storytellers who may or may not have previous experience on the mic. It was through Margot’s love for the stories found in cinema that the story slam project began, and since she and a committee of passionate storytellers have gathered to plan these events. Here are a few of the stories told at the first Cinci Story Slam, themed #itscomplicated, that took place at a local coffee shop in January.
Jordan’s Story
I can often hear songs from the Toronto vocal group, Choir! Choir! Choir!, streaming from Youtube out of Tim’s office in the afternoons. When Tim’s obsession (fair to say, right Tim?) with this group collided with Jordan’s passion for song and choir, the idea to form Sing! Cincinnati was born. This is a group of people who come together once a month to learn a song and its harmonies, and perform it in the span of a few hours. The first choir lesson is February 19th, if you’re in the area, you don’t want to miss it. Even if you’re not a singer, but you love to sing, this is the place for you! Check out the videos to learn more about what Sing! Cincinnati is, and watch their debut performance Christmas Caroling on Fountain Square.
To follow these stories, and the others coming out of this year’s projects, subscribe to our Youtube channel! And, if you’re wondering what all of our projects are this year, check out Candice’s posts 1 2, 3, & 4.
“If ‘being loved’ is the most important thing in our lives, then the most important thing is something we cannot do by ourselves or on our own…we can only receive as a gift.”
— H.S. Reinders
If you want to know, today in 2014, true social inclusion hardly exists. If it did, no one would have to point it out to you, or show it in their outcomes, or write it in their mission statement. Small pockets of it do exist. Our friends in Georgia could tell you stories, and in California, Ontario, British Columbia, and even at Starfire we’re making some breakthroughs, but in reality all of us are struggling with getting it right. The fact is social inclusion requires a tremendous paradigm shift, one that must be fueled by a dedicated leadership. When it happens, you’ll be able to see at your grocery store, your neighborhood, your workplace. It will be undeniable.
Even just beginning the groundwork for social inclusion has many stopped in their tracks. Think of how many friends you have with disabilities. Or how many of your friends have friends with disabilities. It’s hard work, often as ambiguous and mind wrenching as a blind date. Try unraveling the intricacies that come with social inclusion, all in a days work sometime. It’s not simple stuff. It takes guts. Without leaders lighting a path for what is to be, most people try, and end up sticking with the status quo. That’s why at Starfire we rely so heavily on our leaders in this
Tom Kohler and Beth Mount, two leaders in social inclusion
work. People like Jo Krippenstapel, John O’Brien, Tom Kohler, Heather Simmons, John McKnight, Connie Lyle O’Brien, Jack Pealer, Beth Mount, Judith Snow, Jack Pearpoint, and Linda Kahn, (the list goes on). It’s why I look up to my own torch bearer, Tim Vogt. These guys are modern day badasses, stopping at no county waiver cost to advocate that “a good life” is filled with friendship and love, and it’s what people with disabilities deserve.
We all have our own moments we look back on and sort of cringe, “what was I thinking?” and then we feel a wash of gratitude for the leader who helped guide the way we eventually acted. Long-time social inclusion leader, Angela Amado, tells a story about the time she told (basically the grandfather of social inclusion) Wolf Wolfensberger, that she wanted to be the director of an institution for the mentally retarded after college. It was this moment in time for her, when this leader started a new conversation about her career goals, that her course in life shifted toward moving people out of institutions, and into community life.
But the truth is, there simply aren’t enough leaders asking the tough questions and mentoring the young go-getters. So it makes sense that status quo is so rampant. Day programs are “working” just fine, people “like” getting a paycheck from their jobs at sheltered workshops,* and “they will have no where else to go” if we try and fail at designing better services. As a responsible leader who serves some of the most vulnerable people in our society, I cannot imagine the type of will and fortitude it would take to stuff away such fears and doubts, and forge ahead toward the unknown. *(Labor law exemptions for employers of people with disabilities have created jobs that pay as little as 10% of the minimum wage…) There are also those who say in their own defense, “we are doing social inclusion,” referring to activities like outings where a group of people with disabilities go out to a restaurant or movie together. We have trouble taking things a step further, and seeing the damaging effects that congregating people with disabilities in this way can have. Rarely are people asking, “How can we build this into a richer vision of social inclusion, one that involves loving, respectful relationships in the community?”
And while words like “choice,” “self determination,” “rights,” and “person-centered planning” are par for the course at many disability organizations, to put it fairly: these terms are widely misused. Typical organizations lean toward a system-centered, bureaucratic approach, which means these words have come to represent mere cogs in the wheel of cost-driven processes. A person can choose to sit in front of the TV in the basement every weekend, and staff can argue that they are defenders of their choice — even if it results in no community friendships, no visible contribution, no real sense of social belonging. Perhaps staff feel they are not trained on duties of building a person’s social network, or see it as the responsibility of the higher-ups. And building relationships for ourselves, let alone others, can border on terrifying. It takes a pretty thick skin. So, instead of tackling the task head-on, we “come to use rights and choice to plug the hole that the lack of friendship has left behind,” (H.S. Reinders). This substitute for a good life is not going to stand.
Then there are staff who feel the opposite and try their best to carve out a good life for the people they serve, even without supportive leadership. Often, these staff come to be known as the “troublemakers.” Their viewpoints make them outcasts, they are seen as nags and instigators, rather than as the thoughtful, dedicated workers they are. This type of dissatisfaction felt by staff who do not settle for less than a good life, as is evident in Allie’s post last week, should be grappled with openly as a sign of their fidelity to the work. We need to keep having conversations, practicing through trial and error, and struggling to bring things into focus if we ever are to succeed.
—
As you can imagine, it all takes a lot of patience. I’ve had my own moments asking, “Why can’t everyone just do their part?! It would make things a lot easier!! People’s lives are at stake here!!” One of our biggest hurdles might be that most people in mainstream society do not have any grasp or idea of what goes on in a person with a disability’s life. Tell the person sitting next to you on an airplane that you work with people with disabilities, and they will relate your work to the one disability service they’re familiar with, not knowing much about it besides maybe its location and perhaps outside appearance. They’ll say, “they do great work over there.” That’s because people generally think there’s good work being done at disability organizations. They readily feed into the co-opted stories of social inclusion all over the front page of newsletters and brochures, with glossy photos that smooth over the more common reality of isolation and segregation being experienced and reinforced in group homes, day programs, and sheltered workshops. Through these co-opted stories, the community is kept off-the-hook, led to believe that these organizations have people’s lives and well-being “under control,” and that those places are where people with disabilities “belong.” As well, organizations wind-up stagnating, and in keeping with their false narrative the true effects of their work go unexamined. Leaving people with disabilities, of course, to be the most negatively impacted of all as the consumers, yet often the least likely to organize together and demand better.
I’ll admit, maintaining this false narrative of inclusion in the disability world comes with its own merits. Generally speaking, people’s lives are probably better off going to a day program that professes to teach life skills, or art, or music, than sitting at home, alone. Everyone can feel better about that. But the reality is that these programs usually start off with a bang, “We’ll teach people to make art/music/eye contact, and the public will see they are just like everybody else!” and then will plateau into decades of the same ushering in and out of a segregated building without imagination and no ties to community life.* And as it goes, people at the top will applaud, parents will be grateful, and people will keep coming back, because they’ve found it’s the best thing out there that seems to “work.” (*Just last year I witnessed an elderly woman at a day program coloring in a cartoon toothbrush from a coloring book with other participants of various ages during a “Proper Teeth Brushing” seminar. When she smiled and held up the picture, I realized she had absolutely no teeth).
Harsh? Let me take it back a notch. These organizations are not “bad” and should not be blacklisted by society. I would be calling Starfire out if that’s what I was saying. I would be pointing the finger at myself. So many of us get caught up in the work deemed by society to be “good” at some point in our careers, and believe what we are doing is right. All I am trying to get across is that it’s complicated, and maybe more people should know that not every disability organization out there is saving lives, on the contrary. Many lives, many gifts and capacities, are being wasted. So community, you’re not off the hook. We need you to take responsibility too for the inclusion of our neighbors and family members. Most of all, we need more leadership in order to sift through this complicated story, veiled by many truths. Leaders who will help rediscover the true purpose in it all, to validate the reason we all got in this mess to begin with, and bravely start a social inclusion movement.
—
Which brings this thought full-circle. If Angela Amado never stepped into Wolf Wolfensberger’s office that day, and her career path was never challenged, she might have followed the track toward institutional work, never contributing to the effort of social inclusion. Without leaders who possess the courage, vision and willingness to question the status quo, people like myself, like Angela, and any number of us at Starfire will not be empowered. People with disabilities’ lives will not change. We will continue to isolate, segregate, and congregate people into programs with the best intentions. We will keep designing “new institutions,” as my co-worker Sarah would say. We will keep missing the point.
That’s why Angela will say that in her experience, the best staff come from organizations with leaders who are highly dedicated to this work. Watching our own leaders at Starfire, I’ve noticed a fine balance between maintaining an organization’s security, and innovating. You have to learn to be okay with lack of structure for a time. Accept a state of liminality, of constantly “letting go.” Free fall. Until the vision is realized. It requires a lot of support. But I have to think, if corporations expect and thrive on the fact that criticism is part of success, if their customer’s wants are as important to the design of a product as the bottom line, then why are we so afraid to adopt the same model in social service world? Any customer of Proctor & Gamble would ask as much. So when we hear time after time people with disabilities and their parents telling us that what their son or daughter wants most of all is friendship, why aren’t we bending over backward to make that happen? Maybe it’s because we think, well we can’t make people be friends with someone. Like any friendship situation, social inclusion makes us vulnerable to how other people choose to act. People we have no control over. But design thinking would ask us to frame it a new way: How might we set the stage for new friendships to start happening? And then begin the journey of discovery through trial and error and – free fall.
Sure, it’s not always easy. And it doesn’t come with the kind of perks that other innovative corporations might have. But it’s purpose-driven work. And we’ve got hope. And courage. And stories. Lots of ’em. Stories of friendship and love and affinity that make a true paradigm-shift seem that much less impossible, “We cannot do any of the more abstract work, the paradigm-shifting work, if we drift away from the stories,” says Al Etmanski, a cofounder of PLAN. “It’s like cutting off our blood supply. It’s that clear to all of us.” (quote borrowed from this article). With these stories and leadership to drive the message forward, social inclusion can exist. “It’s going to be a ride and a half,” as Tim will say. I, for one, couldn’t be more grateful to be along for it.
“Be kind, for everyone you meet is fighting a hard battle, (including you).”
Friday, February 7th marked the twelve year anniversary of the death my father. That Thursday in 2002 he was here preparing for outpatient surgery, and just as suddenly and inexplicably, he was not. While I usually stray away from the emotional shout-outs on Facebook other than birthdays and weddings, I felt compelled to tag my mom in a status and let her know how grateful I was for the strength and love she’s shown and has shown over the past twelve years—the going at it alone in the aftermath of his death, continuing on as the mom of three children age 16, 10, and 3. As I have a few short months before I become a mother myself, I think back to that February, the days and months that followed, the years now that have passed, and have no idea how she managed. Keeping it together while seeing everything fall apart, what a hard battle indeed.
I write about this because I think there are a lot of loud public battles that are being fought and need to be talked about more– Katie wrote about the battle of leadership and inclusion how it’s not for sissy stuff, and then there are the private, quiet battles being fought, the personal ones that people don’t talk about, and keep to themselves. I’ve never written about my father publicly on Cincibility—it never seemed appropriate, or necessary, or anyone’s business, until today.
This is a post more about personal battles, and the need for all of us to be kinder to each other than we’d prefer, or kinder to each other than necessary.
Phillip Seymour Hoffman’s death has been making the news since he was found dead of a drug overdose this past week and the blogsphere, media outlets, Facebook feeds and other talking heads have been commenting with their two cents incessantly. Questions range from, How did people not see he had a problem? to Is addiction really a disease? And of course the Who cares that another celebrity is dead? rhetoric that pops up each time.
I read one poignant editorial by no less than Russell Brand (who knew he was an intelligent, well-written man?) detailing his own personal addiction with drugs and alcohol and his day to day battle to stay sober. (If you haven’t read it, I highly recommend you taking the time to regardless of your thoughts about addiction.)
The same day I read a Facebook status from someone I know that said something to the effect that addiction isn’t the same as cancer, and if you wanted to see a real battle look for someone who didn’t bring it on themselves. The status has since been deleted after a colorful commentary that ranged from the “I know! I’ve never had the urge to try heroin… WTF?” to the “Perhaps you don’t understand that addiction is a disease.” to the “We can’t save everyone, seems like he brought this on himself though…” It was a curious status, one that gathered controversy immediately, and I’ve been thinking about the qualifiers of “real battles” ever since. What constitutes a “real battle”? Who is worthy of our empathy? Should we the ones to judge someone else’s pain? Is it fair to use our experiences (or lack of experience) as a measuring stick for the amount of empathy another person deserves? Who makes these rules?
I wrote about my friend Phil about a year ago, and out of respect, left the details of his passing ambiguous. At the time it didn’t seem to matter. When I wrote the blog post it was a random Monday night, months after his death with no significance to the date, no current event reminiscent of his death. It was just a post about the reminder of a friendship that had ended, how we come to collect people “like rare coins or trading cards” and how and if people are remembered after they’ve gone. It was a sad unfortunate occurrence, the death of an otherwise promising man, husband, father, and friend.
Given the status questioning if addiction is worthy of the same sort of empathy as cancer, I’ll say it—Phil had an addiction, one that was hard battled, privately, and deeply personal. He died because of this.
I woke up Thursday morning to a status on Facebook from a friend stating that her mother had died after a multi-year battle with cancer. It wasn’t unexpected, and she had been updating her friends over the past week or so with statuses about her mother’s progress and the like. Her mother had been in hospice and she knew that time with her was dwindling. On Thursday morning, a hard battle fought over many years, now over.
It is hard for me to see one battle as worthy of empathy, and another battle deserving of a response of shoulders-shrugged you-brought-this-on-yourself. Both battles have ended lives, leave families behind, both leave lots of questions, both leave a hole in the lives of people who loved them.
Hard battles.
“Soon I could no longer see where I ended and the pain began” Brand wrote about his addiction, narrating one particular day. Reading the line again, I’m reminded that of course it’s not always cancer, or addiction, or death that everyone is battling, but the simple nuances of navigating the day to day—not being able to see where YOU end and where PAIN begins. The blurriness of self and battle; the isolating difficulty that is just being, sometimes. Phil’s sister reposted the Russell Brand article commenting perhaps it could help just one person seek help, or “at the very least, people can step down off the judgment throne for a moment of clarity” about what other people are struggling with.
Three weeks ago I got a series of texts from a friend asking me to check in with someone we both know about my supposed treatment of them. There were hurt feelings over a situation I wasn’t aware of, things taken personally, supposed slights I hadn’t noticed I had done. All this lead to some bad feelings and growing resentment.
I sent a long email, explaining my hard battle over the past fifteen months and hoped that this gave some context that might explain the perceived slighting. My avoidance of her, l wrote, wasn’t imagined. I had been avoiding her (and other people, too) and my distancing was one way to keep my sanity. My lack of conversation was definitely personal – but not about her, but entirely about me and the fifteen frustrating months I’d had with doctors, medications, constant appointments, and disappointment. During that time, I could not see “where I ended and the pain began” and the pain became all-consuming.
I have been having some resistance to our latest series as a staff at Starfire. You’ll recall we’ve done Mindfulness, Asset Based Community Development, Appreciative Inquiry, Facilitation, Design Thinking, and Empathy over the past year to continue learning together and learn new depths to our work. Now, we’re working through the Six Conversations of Peter Block. During one such conversation the question, “what is a crossroad that you are at?” The vagueness of the question was obnoxious to me and I felt myself wanting to immediately reply to whomever was in my “small group of people I know the least” that it was none of their business, and their crossroads were certainly none of mine, especially to people we didn’t know well. What business is it of theirs to know “my crossroad” and how presumptuous, Mr. Block, to assume someone should want to share by design with strangers?
And, unapologetically, I do still feel that way. But that’s part of the problem of why some battles get empathy, and others get written off. People we know the least don’t know our battles, unless they are obviously messy or public and visible, and we keep it that way on purpose, our own protective fortress of pride. A durable coat slipped on for social occasions, taken off only in the privacy and comfort of our own homes. Unfortunately, people who know us best also don’t always see these battles either.
“The pain accumulated and I began to tell myself the old, old story” Brand writes of one particularly difficult afternoon resisting the urge to pick up. And while there may be some people reading without personal experience who are struggling to see addiction as a disease, we can all nod to a particularly difficult battle we’ve raged within ourselves and relate. How often have we sunk ourselves into the pit of our “old story”? How hard it is to claw your way up with dirty fingernails out of that pit once you’ve fallen there?
Addiction. Adulthood. Cancer. Community. Depression. Disability. Divorce. Family. Finances. Foreclosure. Growing Up. Health. Identity. Infertility. Jobs. Kids. Life. Love. Neighbors. Parents. Today. Tomorrow. Siblings. Work. Yesterday.
Within us all is a battle we’re fighting, either the memory of one twelve years ago that still triggers us unexpectedly with painful reminders today, or a newly sworn battle we’re raging through.
Why do I resist small groups with people I know the least when the questions are personal and open-ended? Because my story is long, and difficult and has split ends, and so is yours, and so does yours. And we’re not always kind to each other as strangers, as “people we know the least”, and we’re not even always kind to those we know (and love) the most. Am I worthy of your empathy? Are you worthy of mine? Will we judge each others’ pain? Is it fair for me to use my experiences (or lack of experience) as a measuring stick for the amount of empathy you person deserves? Are you going to measure my pain against yours? Will you scoff at my experience, point out a “real battle” from which I can learn?
In small groups, I think to myself– I don’t need to “know what I think after I’ve heard what I’ve said.” I know what I’m thinking without saying it. I am an expert of my own thoughts, lived them, and I don’t need to say them to you, if I don’t want to. And you know what you’re thinking, you’ve lived with those thoughts, and maybe you don’t need to say it to me, either, if you’d rather not. But I remind myself of what I wrote last year:
“For so long I’ve carried the story that it wasn’t my place to ask. That our story was one of nondisclosure. But not of nondisclosure to each other, but to ourselves. It was none of my business; laughter, jokes, and ignoring whatever was going on what was exactly we needed from each other. I guess in hindsight, we were probably wrong about that.”
What we need from each other is to be kinder than necessary, for everyone, (yes, everyone) is fighting a hard battle, including you.
Especially you.
While in Savannah, one of the questions those we met with had was the “how” behind getting started with collaboration projects. People have seen videos and read posts about projects, but a step-by-step how to was asked for. To keep things simple, we narrowed it down to four steps:
Of course, with anything, there are lots of additional steps and missteps along the way, but at the basis of every project these four steps are followed.
1. Get to know someone and what they like to do or what they’re interested in — what does a person enjoy doing? Where do they like to spend their time? What roles or activities are enjoyable? What things are of interest them? This can be vague: “I like movies.” Or this can be specific: “I like participating in my church community.” We then tease out the why and the what behind these interests. Why do you like movies? “I like the stories they tell.” What do you like about participating in your church community? “I like that I am included in the choir.”
2. Find some people who also like those things too — where do other people who like those things (sports, music, poetry, beer) gather? Who are the people in nearby neighborhoods who are already involved in these things? What places host events related to this interest? Meet these people. Who else likes storytelling? What places support storytelling? Who else enjoys being active in that church? What do people do in the church? Find these people. Find these places. Ask more questions and get to know them.
3. Do something. Create something. –once you’ve found a few people and perhaps a place that shares the common interest, hobby, or activity, brainstorm together about something new that can be created, or something interesting than can be done together. Ask “what if we…” and “why not…” often. Give people permission to do the things they’ve dreamed of.
4. Celebrate. –this is a simple step. Appreciate the work and the planning. Celebrate the event, the meet up, the collaboration project. Go out to dinner. Attend an event together. Buy a round of drinks for the crew. Have a good time and mean it.
