Failing Eddie and Finding the Why of My Work

Eddie behind Brian Williams’ Desk at NBC Nightly News. Photo courtesy of Annie Middleton.

Happy World Down Syndrome Day! It was great to hear my friend Maureen Gallagher from the Mass Down Syndrome Congress talking about their efforts to promote inclusive education, successful careers, and integrated lives on WBUR – Boston’s NPR News Station – this morning.

Just last night, I also found myself shivering outside on Pleasant Street in Malden after drinking a couple of pints. I didn’t realize that the next morning was Mass Down Syndrome Day, but I told an abbreviation of Eddie’s story anyway. My failure to support my friend has directed my career and my relentless approach to career development since 2011.

When people go all Simon Sinek and ask me for the “why” of my work, this is the story I usually share. So, on this World Down Syndrome Day, I want to share this story with you.

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I usually attempt to maintain at least a bit of professional distance with clients. I deeply love my work and I am fully invested in my client’s careers. My work is personal, never just business, in the best sense. But I worry about people, especially those with intellectual and developmental disabilities, walking forward in a world where most of their “friends” are paid to be by their side.

However, if you serve a community long enough and keep your heart attached to your sleeve like I do – even it if is encased in multiple layers of armor – you are going to develop friendships. So it is that I’ve become friends with Craig, William, Mel, and others. But first, at Rectangle anyway, there was Eddie.

Eddie had been at Rectangle since he exited high school in the early 90s. Although a man of few words, he was incredibly opinionated and always able to express his preferences. Eddie also seemed to know everyone in the city that Rectangle called home. If you went to Pisa Pizza, the Malden YMCA, or walked down Main Street with Eddie, it was like being a wingman to a celebrity. So many hands shook, shoulders squeezed, and “you betchas,” spoken by the man at the center of it all.

Put Eddie with his beloved cable access television crew or a group of professionals from a major commercial bank who volunteering at Rectangle for the day, and he’d take the lead within 15 – 20 minutes. My former CEO tipped me off to Eddie’s leadership capacity very early on. Some people are wired to be out front and Eddie was one of them.

The one area where Eddie was not allowed to lead was his own career. He loved being a part of the Rectangle community, being a community ambassador for television or print media, and even going down to Fort Myers for donor funded Red Sox Spring Training cable access coverage. However, as years became decades Eddie was not satisfied with a career in a sheltered workshop where he earned sub-minimum wage. Even in the early 2010s, when we were in the very initial stages of shuttering the workshop, Eddie made it very clear that he wanted to “work at Foodmaster.”

There was indeed a grocery store named Johnnie’s Foodmaster that stood four blocks or so from Eddie’s house. A Whole Foods it was not, just a grubby local that backed up to Route 1 South. Eddie undoubtedly could have bagged groceries, stocked shelves, pushed carriages, and provided the customer service and personal connection that would have persuaded customers not to make the drive to far better-appointed Market Basket two towns over. In his late thirties at the time, Eddie had everything he needed to leave the workshop and start a new career at Foodmaster.

But it never happened.

I was focused on work connecting high school students to employment and was not responsible for providing employment services for adults at the time. A few of my colleagues who did lead on that side told me that Eddie’s family strongly preferred for him to stay at Rectangle and would not support his goal of working in the community.

While I didn’t agree with prioritizing the preferences of Eddie’s family over his clearly stated goal, I also didn’t advocate for Eddie. I could have sat down with Eddie to create a career plan. I could have attended his annual goal meeting and challenged the family to prioritize Eddie’s career over their perception of what was “safest” for Eddie.

Instead, when Eddie talked to me about Johnnie’s on one of the many corporate volunteer days that proliferated at Rectangle in those days, I said, “that’s a good goal. Be patient, we’ll get to it.”

Unfortunately, Johnnie’s Foodmaster is no longer in business. And neither is Eddie. Eddie had a chronic medical condition that rendered him very susceptible to infections. One cold Massachusetts winter, Eddie’s health took a turn for the worse. In a matter of weeks, during which I was only able to visit him in the hospital once, Eddie died.

I can still remember going to see Eddie in one of the famous Boston research hospitals and running into a colleague there. This was a colleague who I never saw eye to eye with since she had a dominating personality that she often used to uphold the status quo instead of pursuing ever stronger outcomes for our clients. While our approach to Rectangle’s core mission could not have been more different, I also never seemed to attend a funeral for a Rectangle client, a client’s family member, or long-time donor without seeing this colleague there. Her depth of commitment to the people who comprised our organization was something I deeply respected.

Eddie was weak, but in decently good spirits when I saw him. As we shared an elevator plastered with imperatives concerning patient privacy on to access the hospital’s subterranean parking lot, I said to my colleague, “Eddie seems to be fighting through this. Surely he will come out of this ok.” She said she wasn’t so sure. “Maybe it’s his time. It might be that he just wants to be with Sheila,” Eddie’s longtime girlfriend and fellow group home resident who had passed recently. That sounded overly sentimental and unlikely to me.

Unfortunately, my colleague had the better read. Days later, as I stood in a freezing cemetery with a borrowed yarmulke on my head, I heard person after person, including our former CEO, eulogize Eddie. I also met Eddie’s family, who clearly loved and were committed to him. Even if their vision for his life was not as big as his, I sensed pretty quickly that they could have been persuaded to support Eddie’s dreams. Especially by an advocate and friend like me who is a blunt instrument.

As we walked out of the cemetery, footsteps cracking on the ground, I asked Eddie for forgiveness. I also told myself, never again.

I failed Eddie. Rectangle failed him also. We took money from the state to support his life and we used him as a poster boy for the corporate volunteers who we later converted into philanthropic donors. When Eddie clearly shared his vision, time and time again, we failed to walk, work, and fight beside him towards a better life.

Why did we fail Eddie? Because of the perception of potential conflict. Conflict with his family certainly, who may have been resistant to his goals. We may have also been avoiding conflict with Rectangle’s budget, which was better served by Eddie staying within the warm confines of Rectangle than it was with transitioning out into a career in the community he loved.

I don’t think that any of us who knew and loved Eddie failed him intentionally. But we failed him, nonetheless.

I was never going to bury another friend along with his unfulfilled dreams. Out of Eddie’s death, new life had to arise.