I did the math that afternoon in May, in my head of course, no one noticing what I was noticing while we stood around drinking 50 West beer from a MadTree glass surrounded by shiny steel tanks and hoses. It was something to notice, that’s for sure whether or not anyone saw what I saw.
Michael, Jim, Bobby, Max, Whit, Blake, Jordan, Jeff, Kenny, Lana, Ray, Jack, Carrie, Cameron, myself.
The math: 9 unpaid citizens. 1 person with a disability. 4 family members. 1 paid staff.
We all met up on a Saturday afternoon. It’s hard in those moments to not celebrate, make a big deal out of it, shake everyone’s hand and tell them how rare, beautiful, extraordinary it is: the ordinary thing of meeting up and brewing some beer with other people who like beer.
I’ve been asked a couple of times via Facebook posts or email what I think about stories that highlight a person with a disability as an inspirational tale. Stories that are written as awe-inspiring or tear jerkers of teens making last minute three pointers, or special touchdown runs from the team manager with a disability. Or Prom Queens, or bat boys with Down Syndrome. We’ve all seen them. They permeate Youtube and our newsfeeds on Facebook, a feel good blip on the screen and then they’re gone.
Stories about people with disabilities often make the reader or viewer feel good but rarely do a lot of good. They don’t ask the reader or viewer to actually do anything to combat the social isolation we know most people with disabilities experience. The videos don’t even tell the reader or viewer that social isolation is an issue, that people with disabilities are often lonely, excluded, segregated, not enjoying reciprocal relationships with (unpaid) ordinary citizens. Instead we’re presented with this: Look how happy he/she is being crowned on Prom court! It’s no matter that while an honor of prom court is a fleeting occurrence of pride, the crown and title don’t actually affect any positive change in the number of friends or invitations out on a Friday night a person receives. (At least that’s not the story being reported).
I am not discrediting the storytellers of feel-good disability “news” or insisting that these moments aren’t a source of pride for those being crowned, those being able to shoot the ball, score the touchdown. Of course they are. It’s just that there are other stories that are of more substance than the ephemeral warm fuzzies that are being put out there. Let’s be clear before anyone reading this misinterprets my writing as “Candice thinks people with disabilities shouldn’t be on prom court/basketball teams.” That’s not the case.
I think the fact that people with disabilities are even included in highschools, on Prom court, or on the team as a manager or player, or given the opportunity play in even the last few seconds of a game are all steps in the right direction. In high school, Alex ran cross country with us, as part of the Varsity men’s team. Unable to run the confusing course by himself, a teammate would run along side him in every race. I recognize how wonderful and important it is to be a part of the team and how good it must feel to see person with a disability just be a teammate, a legitimate peer with someone their age (and not a code word “peer” with someone else with a disability).
Certainly, we’ve come a long way as there are those among us who didn’t even go to a school that had students with disabilities. We’ve taken some large steps towards inclusion, for sure. But, people often mistake inclusion for being in the same place at the same time as a person with a disability.
Occupying the same space isn’t the same as including someone into the fabric of everyday life. Often a favor in these stories is mistaken as inclusion. A favor is an act of special treatment by definition. Inclusion isn’t doing special favors, as Shafik Asante writes, “Inclusion is recognizing our universal ‘oneness’ and interdependence. Inclusion is recognizing that we are ‘one’ even though we are not the ‘same’. The act of inclusion means fighting against exclusion and all of the social diseases exclusion gives birth to – i.e. racism, sexism, handicapism, etc. Fighting for inclusion also involves assuring that all support systems are available to those who need such support. Providing and maintaining support systems is a civic responsibility, not a favor.” (For more on delusions about disability, please read “The Ethics of Inclusion: Three Common Delusions” by John O’Brien, Marsha Forest, Jack Pearpoint, Shafik Asante & Judith Snow.)
But back to the story: how do you write about goodness without crossing the line into the warm fuzzy, ‘aww, that’s so sweet/nice/cute’ realm of storytelling? It’s very difficult knowing what we know about perception and image. It’s precisely why blog posts here from Kathy, Kathleen, Katie, Sarah, Tim and myself are thought about deeply and repercussions considered before being shared. (There’s a backlog of posts that never made it, posts never finished, and posts that are no longer relevant in the unpublished draft folder on Cincibility). We have to ask, does this story contribute to the devalued perception of people with disabilities, or does this story some how show us a different way?
Tim’s blog 51 People is our most read post, most ping-backed post, the most shared. There’s good reason for it, too. It shows the reality people with disabilities often face in terms of relationships and connectedness, and it challenges us another way by simply asking, “what will you do about it?” It tells a very different story than the feel-good Youtube clips we’re used to seeing.
But people want to hear good news, stories that shed some light on people doing good things! you’ll say. But the “good thing” in this story–and a lot of the stories we tell– isn’t the presence of disability; the good thing in this story is people finding each other because of a shared interest and a person with a disability happens to be included in sharing this interest. And included not because of a charity, of pity, or a favor. And really included not just occupying the same space.
The story of the Brew Review, isn’t inspirational necessarily, not in the game winning free throw, Prom Queen type of way. It’s really at it’s core, a story about a couple of guys who like beer. So on that day in May, we gathered to brew, the 15 of us. Previous meetings we decided the flavor of the beer. Michael suggested a wheat-citrusy flavor drawing inspiration from his favorite, Shocktop. Others agreed, with the Brew Review on June 5th, a crisp fruity wheat beer would do nicely for summer.
I don’t know if breweries brew together frequently, if it’s faux pas to share your secrets, your equipment, and your ingredients but Michael and I managed to convince 50West and MadTree to work together with us and the other committee members with out starting a brewery turf war…
We’d need some star power to pull off such an event, some legitimacy and some experts would go a long way. Michael, Lana, his mom, Jordan and I had previously attended an ill-fated brewing class at Listermann in September and quickly learned that we were neither chemists, nor magicians. We could not “home brew” our way to the Brew Review without serious legal issues with the Alcohol and Tobacco Tax and Trade Bureau, let alone some serious flavor issues arising.
Kenny & Jeff of MadTree were introduced to us and they attended the collaboration night where the idea of a beer tasting night was born in October. Kenny & Jeff were in the midst of launching MadTree by the Spring of 2013, but committed themselves to brewing a custom beer with Michael and the committee. After our planning night, Michael, Mary Ann, Bryan, and Amy (all committee members and friends through a theater group they all participate in) thought of locations in Anderson where a tented festival event could take place. They settled on a church parking lot with a pavilion in November, setting a date tentatively for June 2013. Weeks past, unreturned phone calls with secretaries, and we were left hanging. Did we have a location, or not? Hearing of our location woes, Neal, a renowned board member of Starfire, made a call to a new brewery, 50 West Brewing Company. As an accountant, he’d helped with their numbers and knew one of the owners. A meeting was arranged, Michael, Neal and I met with Bobby in January.
The story is told in a 3 minute clip, by Katie, and of course one small video can’t explain all the details, work, time and conversations that went into it, but it captures the essence of what it means to come together.
There were lots of hiccups and steps along the way to plan the Brew Review. One of which was negotiating the logo and design that promoted the event as hip, and something cool that beer lovers would be into. An original logo design featured Michael’s face prominently, and while from a good place celebrating Michael, it didn’t have the vibe that all committee members wanted. While it was Michael’s capstone (as part of his participation with Starfire U), it had become everyone’s project. Featuring Michael’s face on the logo seemed strange to some, and not portraying the event as legitimate to others.
Another meeting was held and Jim invited in his graphic design cousin, Stephen into the conversation. Stephen asked those gathered that night what they envisioned. Michael said a growler, Jordan says warm yellow-toned colors, Gabe said a cool font, Ray said “brew review” needed to be prominent, Jim talked about other brewing events he’d been too like BockFest and BeerFest. We needed to include MadTree and 50 West’s logo. We also agreed that Michael’s name and the committee should be included somewhere, too.
Stephen took all our ideas and came back with this:
All committee members were pleased with the results, and the design was accepted, and easily screen printed onto t-shirts:
The new logo made such a difference in how the Brew Review would be perceived by others. In one of the first capstones Starfire supported, Brandon invited a former college professor of his to Be Hopeful. The professor attended, curious to see what Brandon’s work entailed, and at the end, he remarked, surprised, “this was legit.” Expecting something less than real, something not legit, given that it in part was tangled up with disability.
With capstones, we are sensitive that what we put out there (images, posters, blog posts, Facebook statuses, tweets) to promote events is always seen as legit events, and not as “disability events.” While Michael’s face as the logo was a nice thought and from a place of caring about him, it actually would have had the opposite effect in what we were aiming to accomplish. The event not was not about him but merely, and beautifully including him.
On the evening of the event, 177 people attended. Some of whom were family members and friends of Michael’s:
Some of whom were committee members like Jim & Jordan who invited their networks of friends too:
And others were just people who liked beer:
The beer was drank, people mingled, laughed, ate, and prizes were raffled. At the end of the night, when all was said and done, and people had taken their glassware, tshirts, and growlers home, the “project” was over. The story could end there, but it doesn’t. Projects are a means to grow relationships. The project itself isn’t the main focus, but the means by which relationships are built, the purpose of our work at Starfire.
A few Saturdays after the event, I received an email from Kenny at MadTree. The subject line was “Michael.” It read: “I’ve been thinking a lot about Mike and would like to get him on the schedule for the taproom. I think he could handle a Saturday afternoon shift.”
In August, Michael will take his place at the taps at MadTree alongside other bartenders. There, another bartender will likely teach him what he needs to know, but I suspect he’s already got a firm grasp on what he needs to do: make people feel welcome, pour beer, promote local brewing. He’s got a year of practice under his belt already doing exactly that. And he’ll be able to continue his love of beer with others who love beer too, one of the qualifications for working at a brewery.
To me, this story is different than the flash in the pan feel good stories we’re used to. There’s a level of depth, and respect between people here. This wasn’t a favor to Michael or his family. (After brewing with us over 8 hours and not asking for any money in exchange for time and the 600+lbs of grain and materials, it’s safe to say that Kenny doesn’t owe us any favors.) The committee members joined because they like beer, liked Michael, or wanted to. Incidentally, the Brew Review raised $800 to support the theater troupe that Michael and other committee members participate in, further connecting Michael as a valued member.
The math I did in my head is important. Numbers tells us something for sure, but it’s the stories behind the number: 9 ordinary citizens, 177 people attended, that make the difference.
Michael’s upcoming August looks much different than it did a year ago when the idea of connecting people over beer was so simple, we thought it might just work. And it did.
To support the local breweries mentioned here check out:
MadTree Brewing Company FiftyWest Brewing Company
5164 Kennedy Avenue 7668 Wooster Pike
Cincinnati, OH 45213 Cincinnati, OH 45227