The cookie table would be unveiled in a few hours and our cream horns wouldn’t be on it.
I’d managed to make halfway-decent looking horns by wrapping pastry dough around crumpled foil cornucopias I hacked — instead of the small metal cones normally used for the job. But my partner in the kitchen, who I’ll call Marie, had more limited manual dexterity. She crisscrossed the dough and the horns looked like varying sized balls of yarn.
It was my first major defeat in serving adults with intellectual disabilities in their homes —a job I started 18 years ago. My title is “direct support professional.”
Marie had been asked to bring cookies to her niece’s graduation, and she was told no one would fault her if she didn’t. I took offense on her behalf that the family gave her an out which I presumed was due to her disability. We’d show them, I thought. I asked Marie what her favorite cookie was. “Cream horns,” she said. Off we went to Giant Eagle for puff pastry and marshmallow fluff.
But now I worried that sending unevenly-crafted horns to the party would have left people laughing at Marie. In the end, they were too hot to fill before it was time to go.
The lesson of this defeat was that I need to learn what each of the people I support are capable of and what they want. That’s not a rush job. I also realized that I’d had my own agenda. I’d projected on Marie’s family my discontent with my own family’s occasional dismissal of my skills, filling in my own experiences and inserting my own ego-driven responses. I’ve seen a lot of that in my work.
Read more: All I want for next Mother’s Day is a childcare revolution
Caregiving for our young, our elders, and adults like those I serve, has reached a point of global crisis. Professionals and available family members are in short supply. This stops already-vulnerable people from living their fullest lives. Someone asked me recently what it would take to help more people with disabilities achieve their dreams. I think that the answer, in part, is believing in our own capacity to learn our limits and having an openness to learning to do more than we ever expected of ourselves. At least that’s been my story.
Someone I worked with laughed hard when I described the cream horn incident and said I should have bought premade dough to slice and bake. I saw the humor, but I didn’t quite buy into this. Because, my ego aside, I do think it’s important to expose people to new opportunities.
A religious seeker and unlikely caregiver
With my cooking background followed by 20 years of journalism, I was on paper an unlikely candidate for the professional care field. But my life has consisted of following, off and on, a religious trail of crumbs.
One day in 2005 during a walk in Pittsburgh’s South Side after clocking off from my then-freelance gig at The Allegheny Front, an environment-focused radio show, I saw a sign hanging on the door of an old rectory: “Emmaus Community of Pittsburgh.” The Biblical story known as Emmaus involves two people walking and talking and eating with Jesus and only at the end realizing the divine was among them in these simple acts of community. The story has been a touchstone for many people to realize we find grace in people and places we might not expect.
I knocked at the door to learn more. When Emmaus’ cofounder — a man whose daughter was born with intellectual disabilities — answered, he told me they run group homes. And he added the favorite words of English majors everywhere: “We’re always hiring.” I needed a job to supplement my freelance work, so I was in.
The diagnoses of Emmaus’ residents include Down syndrome, fetal alcohol syndrome and early brain trauma. Each person can excel or be impaired in widely varying degrees. Some are great conversationalists and good readers while others can’t speak. Some ride a bike but can’t drive a car. And, like the rest of us, all the residents can be loving and empathetic and at other times have what workers call “behaviors” — always code for “maladaptive behaviors.”
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On the day of my Emmaus job interview, I had a mystical experience. I slightly sank into the carpet, it seemed to me, for just a moment. And I felt deeply the message: “You’re exactly where you’re supposed to be.” After a few years, I got full-time work elsewhere, and I quit Emmaus only to face a deep depression.
I’ve since returned as an occasional staff member, and because of that I can inject an energy to the job that the people working two care jobs – and there are many – can’t always manage. My specialty is creative fun. It usually goes well.
Once I helped a particularly creative resident, Erin Gannon, paint an umbrella and cardboard box so she could perform her poem “The Colors of My Life” at a community talent show. I’m using Gannon’s full name because, unlike Marie, she’s chosen a very public life: She led me on a journey to write stories like this and lead the All-Abilities Media Project to help her and others with disabilities amplify their voices. She’d heard I had a dual career as a journalist, told me it was her dream to be on the radio, and I mentored her in podcasting. She’s individually won two Press Club of Western Pennsylvania awards and one as part of a team.
Though fun is my focus at Emmaus, a good portion of my work days are filled with mundane and highly regulated tasks. We’re required to provide many residents a cocktail of prescribed medications. Some residents get up to 20 pills, creams and drops divided over three or four times a day. We have to help them to cook and clean, which often means doing it ourselves. And we have to help them develop the social and health skills that would make them more acceptable as friends or employees, such as dressing and speaking in ways so that others feel undisturbed.
True community around the camp stove
Some of my most treasured Emmaus moments are when the residents extend the hand of support to me unbidden — seeing that I’m struggling even if I don’t say it — and offer empathy. One once said, “I know it’s hard for you, Jennifer.” These are moments when I realize, “Hey, I think they like me as much as I like them.” I’ll never delete a video Erin and her housemates and neighbors made and texted me for my birthday. Four people sang and danced to their own tune with the chorus of “Happy Birthday Jennifer Jordan.” For the finale, Erin nailed a 90s Hip Hop Cabbage Patch dance, extending her arms out in a circle with a rhythmic lean of the shoulders. While doing this she said: “Keep on rocking, allllll the way.”
That wasn’t the only time Erin and others have included me in their daily life when I’ve been off the clock. Last October we had one of these moments.
It was that first cold autumn night when we needed our hoodies zipped up. The backyard firepit warmed our feet and toasted our marshmallows as we sat among a smattering of fallen leaves.
“Does anyone remember any camping songs?” I asked the women who’d invited me over.
“On top of spaghetti,” someone said.
“All covered with cheese,” another added. More jumped in: “I lost my poor meatball, when somebody sneezed.”
Then, marshmallow sticks raised in victory, we whooped it up for ourselves.
I felt such an easy camaraderie, a joy and a sense of belonging. And yet despite all I know, I was surprised by the success of our collective memory-mining of lyrics — because it happened despite the women’s intellectual disabilities that often limits their recall of information.
Years ago, I had no idea I’d be a decent support professional or even what that meant. But it’s made me better at supporting others in large and small ways. Today, for instance, I jumped off a phone call because an elderly man on an elevator was dying to tell me about some brownies he’d just had.
Can you imagine a world where we could all see care not as a burden but an opportunity for gathering as a community, a metaphorical campfire? That’s where the divine lies.
Jennifer Szweda Jordan is the cofounder and director of All-Abilities Media, managed by her company Unabridged Press and fiscally sponsored by New Sun Rising. This essay is part of a series of in-person and virtual events called “Who Cares?” and related essays shared at City of Asylum’s Story Club PGH and on the web platform Storyburgh. The content was produced through the All-Abilities Media Project, formerly with support from the Center for Media Innovation at Point Park University and funded in part by the Edith L. Trees Charitable Trust. The writer’s reflections may not represent the views of Emmaus Community of Pittsburgh.
The Jewish Healthcare Foundation has contributed funding to PublicSource’s healthcare reporting.
