“I hope, wherever you come from,
there is someone who holds your story.
Someone who remembers you when you
were knee-high to a grasshopper.” –david pitonyak
Who Holds Your Story is probably one of my most favorite articles to share with people who have asked to volunteer, or asked for a guest speaker from Starfire, or asked for a facilitator for an upcoming “service week.” In small groups, people read the first few pages aloud and then we’ll talk about case files vs. memories, stories vs. data, and how people’s identities often get lost in service systems. I always ask for the names of some of the locations they’ll be volunteering and I’ll get the same responses Drop-Inn Center, Tender Mercies, Starfire, YWCA, nursing homes, soup kitchens, Boys and Girl’s Club.
All are great organizations here in Cincinnati. And then I just say it– the labels associated with those places, the so-called “types of people” they’ll “encounter” instead of meet:
The Poor. The Homeless. The Disabled. The Elderly.
Felons. Addicts. At-Risk. Illiterate. Low-income.
Most recently, I talked with a group of high school girls at Mercy High School on the Westside of Cincinnati. “These are words we’d never use to describe ourselves, our families, or our best friends” I told them. And some nodded, understanding how the story we’d just read together applied to their week of service coming up. I talked about how they likely had a case file on them in their school, and that it probably didn’t say much beyond vaccinations, test scores, emergency contact info, and disciplinary actions.
I explained that at each of the service sites they’d visit, it’s likely that people will have a case file there, too. A place where official notes and documentation are kept. I explained that case files are helpful, especially to staff people like myself who need information about how to contact family in an emergency, or if someone is allergic to peanuts, but it doesn’t tell someone’s real story, and it doesn’t honor where they came from.
Case files keep track of clients and data. But they don’t tell people’s stories. There’s a difference between being known by what’s in your file, and being known as a person.
This is a story about being known as a person. About someone being remembered from when they were “knee-high to a grasshopper,” a story about two people who continue to hold each others’ story, and hold the story of the person who bonded them together.
Margot and Kathy met up a few weeks ago at a local coffee show to talk deeper about the 3Cs, Margot’s PATH goals, and Margot’s life. I was there to help Kathy, an old friend of Margot’s family, learn a little more about what Margot is working towards (aquatic instructor certification, life-guarding, childcare, taking the Metro bus around town, looking for another job besides Kroger, and in explaining 51 People and the importance of other unpaid citizens and friends in Margot’s life.)
As I understand it, Kathy has known Margot since she was a little girl. She was one of her mom’s best friend, and has stayed in Margot’s (and her siblings’) lives since her mother passed away in 2010. She attended Margot’s PATH and has a love for her that is obvious, even in a brief coffee meeting.
The two shared stories of inside jokes from different functions they’d attended over the years, how Margot’s siblings we’re doing, and then conversation trailed to cats and kittens, and Margot’s childhood home where she lived with her mom and brother and sister before she passed away.
“11 cats” Margot corrected.
“You never had 11 cats! When?” Kathy laughed.
“Yeah huh! Bella. She had kittens, Kathy! So we did for a little bit.”
“Always kids and animals” Kathy smiled, and told of Margot’s house with her sister and brother, and her mom. For a moment the two shared a laugh about the cats, and reminisced about “old times.”
I explained the importance of Margot not doing things alone, about needing good people, people who like the same things, too. I explained that paid staff were often good people, but often transient, and whose jobs were to keep people safe, fed, healthy, housed, but not often did their role include to help people to have friends, find friends who were ordinary citizens, make connections in their neighborhood, or know what was most important to a person. We talked more about paid staff, answering questions, talking about home staff vs. day program staff, and shedding light on how systems work with and for someone’s life.
It wasn’t a paid staff’s job to keep memories, to remember kids and a house full of cats, or even stories about Margot’s mother.
It took a few honest conversations that day (and previously in conversations with Courtney, a co-worker of mine) with Kathy to help her get to this point. Kathy assumed that because Margot has paid staff that she will be safe, fed, healthy, housed. And she was partially right. That is what paid staff do, and most do it very well. Margot will likely never be hungry, without medical attention, or homeless. However, it wasn’t until we continued to talk about stories, memories, and unpaid friends and citizens, that Kathy understood a little bit more, that while systems will keep her safe, fed, supervised, and housed, they won’t necessarily keep her happy, remember stories, make plans about what’s most positive and possible in life.
“Keep, keeping on… Now I understand. It’s not just filling up days, but making sure she’s happy, and known.” We talked more about Margot and Kathy working on a resume together, different volunteer opportunities, about Kathy sending some emails to contacts she has a recreation center and how Courtney and I could help find connections, support the work needed to make good things happen.
“I won’t be around forever, either.” Kathy said, “We’ve got to meet new people.” The two talked about plans to volunteer together at spaghetti dinners in order to meet more people and make more connections.
“We could even get a cheap lunch and save our money for pet food. Buy it and volunteer at the pet food pantry– save your coupons, Margot! (laughter). This could be ‘our thing.'”
“A sad and all too common truth for people who experience developmental disabilities is that little, if anything, is known of their stories. Reams and reams of paperwork are generated each year, but only a fraction of what is generated describes the person’s connection to the world. The file is instead a collection of things that the service system wants — a chronicling of interventions, evaluations, signatures, data points. There is no unfolding of things in these files, no character development, no plot. It all reads like the fine print on a cough medicine bottle.” (David Pitonyak)
It felt good to hear Margot and Kathy dream of what could be their “thing” together and making plans, that Margot’s childhood is remembered by Kathy, that her mother, her home, the cats are all memories that someone else knows, and cares about too. That stories Margot carries about her life are not lost, but in fact cause laughter by others who remember that too, even the details (and number of cats) are remembered a little bit differently.
It felt good that this “meeting” generated no paperwork, no signatures, no interventions or evaluations, that this meeting has nothing to do with her case file, but everything to do with her story, and who she is, and who holds her story.