Aside from the scenery and the fact it’s a natural setting for a portrait shoot because of alcohol’s ability to relax everyone, Macari Vineyards is one of Robin’s favorite places. We sat with a bottle of Cabernet and two glasses in the far reaches of Long Island, where the late fall foliage is Travel Channel surreal while some roads lead to Deliverance-like backwoods. To Robin, wine is a sociable and healing component of living well, alongside roles as parent, fundraiser and outspoken activist in government relations for the MS Society. A natural advocate, her former career as social worker placed her in a psych hospital where she serviced people with a range of disorders in a locked unit. Postpartum depression, bipolar young adults, the depressed and homeless elderly, the delusional; people whose insurance, rather than their illness, dictated their stay (a prominent malfunction in American medicine). Though a psych unit would take a toll on most people, she loved it. “I always felt there was hope for every patient that we treated.” This is Robin, who I drank and laughed with, sometimes just sat quietly with, while the October sun crept from white to gold: she speaks to power on behalf of the underserved with volume, compassion and guts.
Her stories surprise me; beyond the impeccable parenting skills and haircut is an echo of the bad girl in acid denim who spent time in juvenile detention. A childhood in Mormon Utah and teenage years in Queens’ rough borders, she shared hilarious anecdotes of high school deviance straight out of The Outsiders. Her anecdotes and history went perfectly with the wine. She recounts the shock of becoming a mother (after years of deciding against it) with amusement, and being thrown across kitchens in psych wards with mellowness. Sincere but not saccharine, Robin curses, drinks, is a lone voice for progressive politics in an area where people wear their hunting licenses and conservative politics on their sleeves and is modest about the impact she has on people. She is on no medications or infusions, follows no holistic treatments. When I asked her what she takes instead, she pointed to the glass: “this.” She is healthy and has no time for concern trolling or autoimmune snobbery. Her sense of duty to six year old Bella is reflected in her passion for activism; “I saw myself as being responsible for another human, and took that very seriously.”
Her dedication towards vulnerable populations was inspired by her aunt’s battle with schizophrenia. Previously extremely close to one another, Robin realized how unwell the woman was when she began refusing medications and was hospitalized. “After seeing how this disease ravaged her mind, the horrible conditions she endured and the substandard treatment in many different psych facilities, I decided to do what I could to help the mentally ill and anyone marginalized by society.” Her aunt died young at Pilgrim State Psychiatric Center. Here, in the graffiti-covered halls pungent with urine, patients were brutalized in front of 14 year-old Robin. It epitomized the dehumanizing space that the unwell occupy in human history.
Disdain for the mentally and developmentally disabled were normalized well into the 20th century, and outrageous practices were taken against them in the name of the greater good. Francis Galton once described eugenics’ aim as to bring “as many influences as can be reasonably employed, to cause the useful classes in the community to contribute more than their proportion to the next generation.” The logic of eugenics is complicated to consider: he inspired birth-control heroine Margaret Sanger and Charles Davenport, a guy who worried African blood would corrupt the unimpeachable well of Caucasian heritage. Galton’s was a social and economic endeavor to manage “all influences...to give the more suitable races or strains of blood a better chance of prevailing speedily over the less suitable.” Inelegantly put, only the best contributors to society should reproduce and those with “lunacy, feeble-mindedness, habitual criminality and pauperism” should be discouraged, even prevented, from mating. We underestimate the impact eugenics has had on modern-day social conditions, medicine and law: not just shelved as Hitleresque horror, it’s been ok’ed by the Supreme Court. In 1927’s Buck v. Bell, Chief Justice Oliver Wendell Holmes upheld the involuntary sterilization of Carrie Buck, a “feeble-minded” 17 year old rape victim and new mother. Holmes’ conclusion: “Three generations of imbeciles are enough.”
The Court’s opinion- an anemic three pages- was that Carrie’s 8th Amendment right was never violated, as the measure wasn’t punitive. It’s far from our country’s only legal passage; Iowa, the ninth state to pass a sterilization law, sterilized nearly 2,000 people up until 1963. “Socially dependent” groups targeted were those with mental illness and retardation, even epileptics (an obviously manageable condition). Imagine the barometer with which our medical and legal institutions defined the worth of a human life. Such bias and misunderstanding is reflected in the treatment of Robin’s aunt and those like her, who often become institutionalized, incarcerated or homeless. It’s not Galton’s era, but people with chronic illness (physical or mental) are still handed baggage from everyone who fear it. So we have people like Robin, who are fearless when it comes to the poor treatment of others. At her hospital, “they called me Norma Rae.”
This was before her MS diagnosis, before advocacy became more personal. In 1995, right after her wedding, growing symptoms were masked by “comes with the territory” job injuries. Neck herniations from being hurled across a room by an out-of-control patient explained tingling and numbness in her extremities, while back pain was a result of moving patients around. One day her face went numb, and that couldn’t be explained. At a neurology consultation, her reflexes were so exaggerated an MRI was ordered; she was diagnosed in 1997. She was relieved just to know.
As MS made work difficult, her desire to help became more acute. Robin entered the MS Society to volunteer, and instead of social services she joined the Government Relations Committee. Such a role requires confidence to convey issues to legislators and patience to see policy changes through. “After my first visit, the program coordinator said I was meant to be an advocate. She was right. I love it.” But Robin does fear failure; when you speak for others, the pressure to say the right thing is enormous. She said she avoids things “I probably will fail at,” but I sense that she attacks them. Her decision to take on the Society’s Board of Trustees took a year to make because she thought she’d be terrible at development, but she needed the board more involved to affect real change. It worked, quickly, and turns out, “I don't suck at fundraising.” She gets things done, and one can envy her for the authenticity and class with which she approaches each PTA meeting, bureaucratic slog or glass of wine.
She’s always been this way, especially when the payoff wasn’t glamorous or simple. Liz, an elderly schizophrenic with violent tendencies and lifelong institutionalization, once arrived at Robin’s unit. She and her team soon found that Liz’s former nursing home refused to take her back. No one else would take her. She became Robin’s charge for three months, unfathomably long for a 7-10 day acute unit, and “was a piece of work, made me earn my money everyday.” Eventually, the social workers and Medical Director called in every favor possible to get her into a different, brand new facility. A few weeks later after Liz’s transfer, Robin and her team visited. The unit was beautiful, and Liz , “probably for the first time in her life,” was lucid. Happy.
This, light years (if not actual years) from a time when sterilization was applauded and great scientific, social minds wouldn’t make a basic connection: that once we are here, basic humanity is nonnegotiable. And Liz’s lesson, Robin told me, is that in the right environment and with the right support, even the most ill or orphaned can flourish.