Weeks before the 2016 Presidential election, I sat drinking red wine with a woman several decades my senior in a Connecticut yacht club at 11am on a Tuesday. Rain crescendoed on the waterfront, and Susan’s magenta silk and sparkling oversized gems served as a middle finger to the whistling downpour (and perhaps, to the larger cataclysm on its way).
While the day was upbeat, Susan — an activist, fundraiser, feminist, friend to high level blue-state politicians and adoptive mother — had a timely message to impart about civic participation and personal integrity. Working in MS advocacy and other community efforts for decades (read her letters, like Testimony in Support of Senate BIll 230 and in Opposition of Proposed Cuts for Medicaid LIA Benefits, if you have time!), her efforts are uniquely suited for replication and recognition today, when healthcare is especially imperiled: picture, if you can bring yourself to, footage of Capitol police removing deeply disabled protesters in wheelchairs from Congressional hallways when the ghastly Senate bill was revealed to harm millions of Americans (mostly disabled, old, poor and female). And though each day brings more dismaying news, we’re discovering new aptitudes and avenues for action. While White rage elected a vain, stupid, petty monster and a heartless Republican mafia, it’s an era in which healthcare is finally being accepted as a right and not a privilege by the majority of US citizens.
This issue — the care and dignity of ill and socioeconomically disenfranchised citizens — is Susan’s. Her history of marching, organizing raffles, writing real letters and building in-person coalitions come from an upbringing steeped in local civic responsibility, and even in the age of Trump, Susan is upbeat about what she considers a nonpartisan matter. “Being an advocate is neither being a Democrat nor a Republican, but being a passionate person.”
Susan, ever-energetic in her 70’s, reflects on how early life in an intimate coastal Maine community instilled in her progressive civic values. Her family was popular, and Susan’s youth was spent assisting her gentle, blue collar father in community service projects. “Dad did for everybody,” she told me that day, the impetus his own unconventional upbringing and early responsibility: set to graduate high school at the moment his mother departed for a career in Vaudeville, Susan’s father was forced to quit school and care for a large family. On the other side, Susan’s maternal grandmother— college grad, “go-getter” and board member for the local nursing home— inspired Susan and her friends to visit the senior residents and perform. ”We would sing, put on plays and think we were the best act in town.”
An early friendship with a classmate ostracized by other children because of her polio diagnosis (and corresponding disability), helped shape her inclusive worldview extending particularly to individuals’ whose lives are touched by chronic illness. And while empathy often blurs with patronization and objectification— something people living with disability have firsthand experience with— the foundation of Susan’s advocacy isn’t pity. Rather, she’s simply fighting to “make a workplace, a town, a community or state a better and safer place.” It is not to “fix” or objectify the individual, but to ensure a healthier, more compassionate and effective society.
She began dedicating time to MS advocacy in 1995, when calls to action required more than a Change.org signature. Today, while she employs the standard digital outreach, she still organizes poker games, car shows and chili cookoffs: interactive, old-school events that encourage community. In fact, I met her at a biker rally benefiting MS research, co-organized by one of her women’s groups.
In her policy efforts, Susan consults with an impressive directory of local representatives and Congress members, including outspoken Democratic Senator Richard Blumenthal. Political capital means little to her, and her policy-based accomplishments on behalf of those with MS were listed almost offhandedly. She speaks annually on critical issues at the Legislative Office Building on prospective bills. She writes Congressional letters and visits the Capitol every year for MS advocacy, buoyed by the support she demands and receives. “I will, and have, asked for support from any and all of them whenever it is deemed necessary.” This grassroots will to steer policymakers into action is evident nationally in 2017: at town halls, where senior citizens and children demand accountability and ACA subscribers fight for their life, or in handwritten letter campaigns, or simple acts of solidarity with a neighbor on the subway. In the meantime, Susan’s been doing her thing for decades in Connecticut, vividly dressed and focused on a vision for the MS community. Her work is a legacy and map.
It’s also difficult, engaging the intentionally frustrating pace of policy change as well as MS’ fundamental realities of human pain, mortality and stress. “It has been very painful,” she told me, but “I prefer to think about the great friendships I’ve made, the wonderful events I’ve attended, the money I’ve raised, the faces I’ve painted, the speeches I’ve given, the letters I’ve written, the phone calls I’ve made, the advocacy I’ve promoted and the meals I’ve made in the name of raising awareness....the positive aspect so far outweighs the negative. It is necessary to put anything negative behind me, not to be forgotten...but as a gentle reminder that kindness pays off.”
Giving itself is enough of a reason for Susan to keep up this work. And aging doesn’t frighten her, it’s merely more of an opportunity to learn. “Growing old is not for the faint of heart; it is necessary to be a bulldozer. I feel very blessed to have created an aura of being ‘a go-to person’ for many people. And the older I get, the list gets longer.” Resplendent in pink and day-drinking on a rainy Tuesday morning, this activist who’s just as comfortable with speaking to Senators as she is with organizing raffles has earned her swagger. And we may aim to be a little more like her.