Sean Kirst
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The date, looking back on it, seems a lot like fate. This coming Tuesday would have been the 30th wedding anniversary for Henry and Jean Jeffers Wesley, a couple who lived out one of the greatest love stories, ever, in Western New York.
Henry lost Jean last year, when she died at 84. He will be thinking of her Tuesday, remembering both the strength of their long marriage and the thoughtless bureaucratic hurdles they overcame to exchange vows.
That was after their parallel trajectories lifted them into independent lives, after they survived an era of national cruelty and darkness for countless women and men born with developmental disabilities.
Jean was both the most important person in Henry's life, and a living symbol of his liberation. To their friends, for that anniversary to fall on the day of a presidential election - when Henry intends to travel to the polls to cast his ballot, as he always does - takes on powerful symmetry.
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Their lives represent a painful, and then triumphant, American journey - always intertwined, for generations, with the actions or indifference of those who seek our vote.
Henry was surrendered as a little boy to the old Willowbrook State School, on Staten Island. This was in the late 1940s, not long after Henry was born with cerebral palsy - a condition family members would tell him, decades later, was worsened by an accident during his infancy.
His disabilities were entirely physical, with no relationship to his keen intellect. None of it spared him from an ordeal that spanned the first few decades of his life.
Henry came of age at a time when generations of Americans with disabilities were locked away in brutal, dehumanizing institutions. For another election time column in 2020, using a device called a Dynavox that helps with communication, Henry sent me an email recalling the "deplorable conditions" he endured inside an infamous state institution:
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"Most of my experience at Willowbrook was constant neglect. The school was understaffed, overfilled with patients and there was a huge lack of resources, which left patients naked and covered in urine and feces.
"I was abused both mentally and physically and was not called by name ... referred to by number," wrote Henry, who is Black. "Oftentimes, racial comments were made to me. At times, even if I had done nothing wrong, I was beaten, put in a straitjacket, tranquilized and thrown into a room for solitary confinement."
He endured it all and made it out, thanks to a combination of forces. A growing advocacy movement for Americans with developmental disabilities received a major boost when Geraldo Rivera did a national television exposé about Willowbrook and its unbearable conditions.
Lawmakers and public administrators - pushed by relentless advocates, who called upon collective conscience - finally confronted an American tragedy. They began liberating people with disabilities from behind tall brick walls, returning those women and men to the larger community.
That is how Henry found his way to Jean, whom he met more than 50 years ago at the Wassaic Developmental Center. She had also grown up within the harsh constraints of the state system, believing she had been abandoned to that fate by her mother.
Their perseverance "testifies to the extraordinary significance of civil rights for people with disabilities," said Andrew Marcum, formerly of Buffalo, a historian and academic director of disability studies programs with the CUNY School of Professional Studies.
The Wesleys became passionate advocates for other Americans with disabilities, a couple whose authority grew from what they witnessed and withstood. Their lifetime work, Marcum said, "is a reminder that we do not have to accept things as they are."
"We do not have to accept inadequate access to home care that forces people out of their communities and into institutions in the present day. We do not have to accept policies that penalize people with disabilities who choose to marry or work by denying them access to benefits and services they need to live in the community."
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"Everything to me is about an inclusion community," said BJ Stasio, who will discuss that topic as part of a panel next week at Hilbert College.
What Henry and Jean accomplished, Marcum said, "demonstrates clearly that oppression, injustice and inequality are not inevitable."
Those struggles are hardly over for many in the disabilities community. It's why Henry votes in person, believing his presence at the voting booth makes a statement in itself about a place that was once beyond his reach.
As for Jean, it was only in recent years, through DNA testing, that she learned the truth of her family story: Her mother, who cleaned homes for a living, never abandoned her. Instead, her mom died in a difficult childbirth that Jean believed resulted in her cerebral palsy.
The infant went into the care, if you want to use that word, of the "state schools." After years of isolation and neglect, Jean returned to the community as a result of the ongoing push for civil rights, and she and Henry found together what had once seemed impossible.
They married Nov. 5, 1994, at Jamestown's Hillcrest Baptist Church, despite countless, maddening procedural obstacles thrown into their paths. For years, they led an independent married life with the help of support staff at the Resource Center's Whitehill residence in Jamestown.
Henry recalls how Jean, after learning the truth about her family, had a burning dream: She wanted to put a tombstone on her mother's unmarked grave in New York City.
While Jean died 18 months ago, at 84, Henry still hopes to complete that quest - and he is confident his friends, notably Resource Center self-determination assistant Britnie Barmore, will help to make it happen.
"It's something that I wished we could've done together, and I know how important it was to her," Henry wrote. "If (I'm) not able to do so, I know Britnie will make sure it is done, for Jean."
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For this Yuletide, he finally has the knowledge that can "heal me in some way."
Barmore met Jean 11 years ago, and quickly came to appreciate her fierce will and sense of humor - an impression reinforced when Barmore began working with Henry, as well.
"They didn't let anybody tell them they can't do what they want to do, just because of their disabilities," Barmore said of the couple. "That's who they are. That's what they've had to do for their whole lives."
Henry will be thinking of Jean on Tuesday, their anniversary. For decades, they would celebrate by exchanging gifts and going out to dinner.
This year, Henry's quiet day will be built around a visit to Jean's grave and a trip to the polls, where he'll choose "a candidate who has the best policies that directly affect myself, and others who have had similar lives as I have lived," as he put it in an email.
"Being able to vote," he wrote, "is so important because it gives me independence I didn't always have." He mentioned how "life, liberty and the pursuit of happiness" are far more than simply words if you've spent much of your life being denied those basic freedoms.
Henry declines to say - as he always does before he votes - if he is selecting Vice President Kamala Harris or former President Donald Trump. He chooses to keep that decision to himself, focusing his public message on the "incredible people in my life over the years who have showed me so much love," and on the idea that a nation that gracefully acknowledges past hurts can find wisdom, strength and purpose through that honesty.
"I believe," he wrote, "we can only learn from our past to grow and do better as a country."
At 79 - with much work left to do - he describes himself as happy.
Barmore, his longtime caregiver and friend, sees it all as seamless motion, a sign of a monumental civic life. To her, Henry will be offering the ultimate honor to his wedding anniversary - and his wife's memory - when he goes out to vote.
"It's no coincidence," Barmore said. "It's a sign that Jean's still there."
Sean Kirst is a columnist with The Buffalo News. Email him at [email protected].
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