I remember a year or so back, Tim had a meeting with someone important. He was explaining our work of including people in service and decision making, advocating for choices, all the goodness we’ve blogged about for the past couple of years, and what we have to be proud of. He talked of people growing over the past few years and helping people be known for valued roles. The person remarked, snarkily, “well, welcome to the party.”
I remember Tim returning from the meeting red-faced with anger and frustration. “Welcome to the party?” I can’t remember one-hundred percent, but I think Tim said he said in the meeting, “well thanks for inviting us” in that respectful, but seriously disappointed and angered tone that only he could have done with this person. I remember the “welcome to the party” story often, and it doesn’t make me any less annoyed.
We find ourselves running in circles sometimes with those that set secret standards and then don’t tell others about it. You can read about Tim’s frustration with Janet Klees when we were in Louisville in 2009 –Some people have collected the wisdom and kept it to themselves. I’ve had the experience myself a few times, most recently in Savannah. Tom Kohler offhandedly remarked when we were meeting with him, “you do segregation really well.” I remained composed, though inevitably blushing I’m sure (as I do whenever I’m stressed/upset/nervous/laughing too much/tired/drinking bourbon/or anytime it’s 3 o’clock for some reason), and talked deeply about people’s capstones, (including Nikki who travelled with us as you’ll recall), internships with a soon-to-be Cincinnati City Council member, hospitals, United Way, a museum, the Girl Scouts (whose headquarters are in Savannah); I briefed him on the hundreds of community partnerships and the like. He remarked that people in Savannah would love something to do, that there aren’t good options, and that he meant no offense.
We didn’t get to go deeper due to our company and our unexpected filmmaker in tow, but I felt that deep pang of defensiveness, embarrassment, and anger. I can recognize the shortfalls of a program as well as the next person. I know what we do is not ideal, but our world does not operate in the ideal either. It’s why we’ve asked for help from Tom and others. It’s a heavy load to carry alone, and thankfully, others have invested time and cups of coffee in us. We struggled with balancing what we know to be right and true with others who don’t know any better, don’t care to, or aren’t even aware that there’s a problem.
I’m biased, of course, but I like to think we’ve intently avoided becoming one of those people that set the bar high but look down their noses and snub the doings of what others think is good work. But if we’re honest, we are all those people from time to time.
We received a Christmas card recently from an agency whose pictures reeked of devaluation. It came from a place of wanting to share in the Christmas spirit, I’m sure, but instead, it showed dozens of unflattering pictures of grown adults in elf or Santa costumes that all live in the same group home. Most people in the photo card didn’t smile. Actually, I don’t remember anyone smiling. Some looked pissed off. No one’s names were used. It was essentially, a card full of anonymous people that could have been anyone angered and saddened by the holiday season, and it could have been a card of people that no one would have wanted to know given the way they all looked. However, this was a Christmas card with people that Gio, Bridget, Lauren, and Tim, among others, did know. And this was not a representation of their best selves. Maybe we could have sent an email to the person making the card with a polite thank you for the Christmas cheer and a by the way did you know this card makes people look awful, scary, sickly, and childish? Perhaps that’s still possible. Perhaps it’s what Tom Kohler did for at the coffeeshop for me. You do segregation well.
It still stings, but it’s also why we’ve been working so hard. It’s why we’re trying to understand our language around “members” and “membership” to mean everyone, why we’ve recreated our forms to be universal, why we’re meeting tomorrow to understand why certain staff talk to only people with the label of a disability to get involved, and why others talk to only people who don’t have disabilities. It’s why capstones have paved the way to understand what our work can be and is about, it’s why a lot of us spend more of our time being curious about other people talking to friends’ girlfriends about being a nurse third shift and how she’d love to teach sometime at Starfire U, inquiring about the men you’ve gotten your haircut next to for the past three years about what they’re passionate about; it’s why we ask an artist to meet Lawanda over coffee and watch her start to understand what it is we do and why she wants to get involved too, it’s why I was talking to a volunteer for a trap-neuter-return rescue effort for an hour in a bar on a Friday night even though I’m allergic to and sincerely hate cats, it’s why we make that leap and ask to meet up with them later for coffee, or Facebook them with a message “you should meet my friend Ashley and Sarah,” it’s why helping young people explore what they’re good at is so important, and why we’ve got to get more people involved in all of this. And it’s why people like Tom says what he says or why Jo Krippenstapel keeps meeting with us and nodding with a smile or asking seriously “say more about that” when we’ve gone astray in our thinking.
I was at a meeting a few months ago at Starfire for a local community organization committed to revitalizing Madisonville with a business district, housing and other goodness. I had offered to host it as I was beginning to get involved in their mission as a Madisonville resident and Starfire’s building is beginning to be seen as a community building, instead of segregated disability place. The guest for the evening was an expert of community building in Chicago, in town to consult with those heading the project. (I’ll have to remember to blog about my discomfort and eye-roll reaction with a “community expert” from Chicago coming into Cincinnati to tell us how to be neighborly amd build community, but that’s an aside….)
Joseph helped lead people into the building and give a brief tour to those visiting for the first time. I gave an intro welcoming them to Starfire citing our usual work: connecting people based on interests and talents, helping others be known for their gifts, community, inclusion, etc. The expert nodded knowingly and begins to tell the tables of Madisonville residents about his mentally disabled daughter, Betsy and how they looked for a place that would take care of her, and about his son– the lawyer.
I often wonder why people feel the need to do that. Why introduce their son or daughter (or anyone for that matter) in a way that immediately focuses on something understood by others to be a deficit? I talked about this at length with Jordan and we joked about the ridiculous, negative, and all true ways his parents could introduce him if that was the standard. I’ll spare him the examples we came up with.
You could introduce anyone deficit first. My chronically lazy daughter. My useless and distant husband. My clinically depressed sister. My financially inept cousins. Oh look! There’s my infertile best friend, and her husband, the one who was fired last week. Over there is my brother, you know, the one who dropped out of college and impregnated his now ex-girlfriend. There’s my niece, the one who still owes me $200 and never visits family when she’s in town. There’s the uncle that was addicted to painkillers… you get the point. None of the absurd examples tell us anything. Neither does “my mentally disabled daughter.” I wonder what Betsy cares about, what she’s interested in? What’s the funniest joke she’s heard in a while? What was her 16th birthday like? What’s her style? I’m really less interested in the fact she has a disability. It matters, of course, especially to her and her family, but it doesn’t have to be that which defines her–especially if her brother is “the lawyer” and she’s “mentally disabled.” Brenda said it best once, and I’ll have to paraphrase, when someone is 50, they’ll still have a disability, but they’ll also have their inner self, things they care about, things they’re proud of, valuable roles, self-esteem.
There are secret standards, ones we’re still trying to figure out and do better by, and then there are standards that should apply across the board, disability or not. You don’t introduce your daughter Betsy, to a group of strangers as your “mentally disabled daughter.” But again, people don’t know, and it’s why Kathy is beginning to think about how we engage people earlier in learning with us, and it’s why Tim and Kathy Wenning are thinking of ways to stitch together the parents and our staff.
It’s why really, all of us care about this. “Welcome to the party,” the Christmas card, doing segregation well, Betsy– it’s all related. It’s pointing to a need of being able to better express what’s important and why we believe it’s important, and not letting the silly stuff that’s less important get in the way of helping all of us grow in friendship, be loveable and loved, have a safe and welcoming home, a supportive family, a vibrant community, and a recognition that we are valuable.