On Wednesday, I went to Raven’s, (my youngest sister) spring performance. It was a typical K – 8th grade music concert. A stage, a couple of bad microphones, adorable kids with missing teeth, tiny Kindergartners, awkward 6th graders, pre-teens too cool to care their parents are taking pictures and tearing up at their songs. I took this picture of Raven next to her art work (left) because our mom couldn’t make it to the evening. I did the mom thing and embarrassed her. I’ve posted it below to add to that effect.
isn’t she adorable?
While I was there I was known as “Candi” not Candice. I ran into my Kindergarten teacher, Mrs. Marois, my fifth grade teacher, Mr. Mohr, my 8th grade math teacher, Mrs. Hamm. I saw my 7th grade teacher, Mr. Cameron, and a couple of moms of people I went to grade school with, who are now the grandmas of kids Raven goes to school with. It was a nice enough evening and Raven and I wound up going to the reception in the cafeteria afterward. It was there that I talked to other people who knew me whom I haven’t talked to much over the past 10 years. They asked about my mom, our sister Jen, how Starfire was going, congratulated me on my recent wedding. They knew what I’d been up to, kept track of me and my family since grade school. They knew who I was, still cared, and were curious about what I was up to.
In my small group during Thursday’s meeting, we decided to talk about hard conversations and how much you push towards valued roles, experiences, and the like and when to just not push. In hiring connectors for fourth year members, I’ve been frustrated with not getting names or help from families. When asked “who do you know that…?” some people have come up blank. “We don’t know anyone” I’ve heard said.
Thinking this couldn’t possibly be true, given my experience on Wednesday night of running into 10 or so people who know me that I haven’t talked to in years, I began to think about how my childhood and life was probably much different than anyone’s life that was labeled as a “member of Starfire.” My small group, Courtney, Katie, and Bridget agreed, thinking about their lives, too.
Bridget told a story about her son Aaron’s primary grade awards that took place that day during lunch. The teachers were honored during the assembly. The special ed teachers were thanked first and moved quickly to the left, she recounted to us. No one clapped, and they quickly moved out of the way for the next teachers to be honored. Bridget noticed this and thought it was strange. Next, the kindergarten teacher was a celebrity! There was applause and the other teachers being honored formed a line next to her and smiled and clapped. Bridget wondered out loud about the difference she saw. We all guessed that the special ed teachers weren’t known to many in the school. They weren’t seen by many, and no one clapped. (Probably Bridget said, because most people didn’t even know they taught there and had no idea who they were).
Who were our friends in grade school and high school, we asked? Bridget answered, the people who did the same activities as us. I had softball friends because much of my time in the spring was spent playing softball. I had Girl Scout friends because we had a Thursday night girl scout meeting in the parish center and had badge ceremonies. Sold cookies after Masses, went on field trips. We had songs and the Girl Scout Handbook. We had secret handshakes and uniforms.
It’s no surprise that kids with disabilities often get left out of this stuff. If you’re not on the softball team because you’re no good at it, then you miss out on months of practices, games, team parties, the bonding time being driven around by other people’s parents. If you are on a softball team and you have a disability it’s probably a special team, with all kids with disabilities. None of those opportunities, of course, are necessarily bad. But they aren’t typical. You miss out on awards night with everyone else in the school gym and maybe sleepovers and inside jokes with the rest of your classmates. If you’re not in Girl Scouts because you couldn’t do all the things required of earning badges (which used to be the case), or couldn’t go to sleep-away camp because you needed help with some things at night or eating, or other personal stuff, then you’d miss out on all that too. You can see where the narrative leads.
So when we get to PATHs and capstones, the question of “who do you know?” or “who knows your son/daughter?” often stumps people. There often weren’t friends (or many of them) in grade school, high school. Not a lot of ordinary citizens that spent time with their son or daughter because they wanted to. Kathleen Cail posted a link to an article about friendship last week that a few of us shared on Facebook. If you read it, you’ll see just how important it is to have people in someone’s life that choose to be there. The author writes, upon learning of her son’s diagnosis, “At the time, we didn’t question that Ben would have friends. We didn’t know that being friendless was the norm for kids with physical and intellectual disabilities.”
In 2008, each member of the current senior class was offered a PATH.
Douglas’ Northstar; as a brother, Douglas is walking his sister down the aisle this Fall at her wedding!
Of those 21 people, only one person had an ordinary citizen present in their planning circle. Jeremy, a long-time friend of JC’s attended. Jeremy was a friend from Norwood HS who had kept in contact with JC. They watched wrestling together, listen to metal music (note Jeremy’s Insane Clown Posse t shirt), hung out. They were, and are, still friends.
(from Left to Right) Jeremy, Jackie (JC’s mom), JC, and Uncle Bob
This year, we’ve been much better at asking and inviting. This leads to a different story for people. In a recent PATH, Douglas mentioned that he wanted to work out a gym with some guys in his positive and possible conversation. A service facilitator recommended services and day array program where fitness was a focus. But, in Douglas circle was a guy from Xavier, Adam, who had met Douglas a few months ago. He spent a semester’s worth of Friday’s eating lunch and learning about Starfire, teaching classes about golf, participating in different experiences, exploring with us. One of the people he ate lunch with that semester was Douglas.
Anne, a spirited co-worker of ours here, invited Adam to Douglas’ PATH (with Douglas’ permission, of course.) When the circle became quiet about where and with whom Douglas would work out, Courtney (another thoughtful co-worker) asked Adam “I mean, do you go to the gym?” Adam answered,”I go to O’Connor Sports Center.” When asked if he knew anyone that would be willing to include Douglas in going to the gym with them, he replied, “I could do that.”
Craig and his PATH circle
Adam probably doesn’t know that the invitation to work out with Douglas changes Douglas’ story in a powerful way. It’s why in Craig’s PATH this year, a point was made to invite Mike, an IT professional who had taught classes here, runs our systems, invited Craig to help with software and glitch problems, and knew Craig as a capable, and legitimately certified computer guy. Mike was the voice that was able to talk about real opportunities to share Craig’s gift of technology. (It was recounted to me that most in Craig’s circle didn’t speak code, except for Mike and Craig and Jon ) It’s also why Margot invited Jeanne. Jeanne and Margot have gotten to know each other through volunteering at Interfaith Hospitality Network. Margot, Jeanne said, “knows all the kids names before I do.” Now Margot is working on her schedule so that she can volunteer on her own with Jeanne, outside of Starfire. You can see how having ordinary people in a PATH circle helps change the story of what’s been told about a person in a real way.
Margot’s Northstar. Jeanne suggested the central image of a sports bracket with Margot being the champion of all the things she likes to do that compete for her time!
Our work must be about friendships, networks, community building, and people. We must have parties, grill outs, celebrations, conversations over coffee, beer, and lunch. We must make invitation and think of people we know and how to draw them in based on what they care about. Going to the gym changes Douglas’ story. Volunteering with Jeanne will change Margot’s identity. Mike’s knowledge of computers and his belief in Craig’s capabilities make a difference in a practical way. We give people a reason to meet one another, get to know one another because it’s important to someone’s life. It can mean the difference between being known as a person, and being a consumer, a client.