Henry Wesley: He survived the Willowbrook State School to become a champion of self-advocacy for people with disabilities. Credit: Photo courtesy of Britnie Barmore

The marker is engraved and ready to put up. Before long, whenever she can put the excursion together, Britnie Barmore will join some friends in making the drive from Western New York to Mount Olivet Cemetery in Queens, where Agatha Jeffers is buried in an unmarked grave.

The new tombstone, once set up, will change all of that. It will be a final gift to fulfill the great wish of Henry Wesley, an Upstate giant who died last week in the Chautauqua County city of Jamestown, at 80.

In moving symmetry, his death came 35 years to the month after the federal Americans with Disabilities Act was signed into law, a moment — commemorated this week with a march and flag-raising in Syracuse — that opened up a new world of rights, access and opportunities for women and men with disabilities.

That Henry lived to see it happen — and to embrace the ongoing results — was a kind of miracle. His journey was a triumph of courage and resilience, his friends say. They emphasize how the greatest moment of his life occurred decades ago, once he met Jean Jeffers Wesley — like Henry, a survivor of a cruel era of brutal, dehumanizing state institutions.

They were married in 1994 at Jamestown’s Blackwell Chapel AME Zion Church, the same place where Henry’s funeral will be held today.

Asked about the way she’ll always remember Henry and Jean, Deseree Johnson — a community habilitation specialist who grew close to the couple at Jamestown’s Resource Center — offered the one overwhelming impression that was palpable for anyone who stopped by to see the couple:

“Their love for each other.”

Henry always made it clear: Jean’s support was the bedrock for his sweeping array of achievements. He lived his life with cerebral palsy, a developmental disability that limited his mobility and ability to speak. Left as a young child at the Willowbrook State School on Staten Island, he spent 23 years inside that notoriously filthy and overcrowded facility.

When I was working as a columnist with The Buffalo News, Henry and I often exchanged emails. That included a note I quoted in a piece in Buffalo, in which he described the relentless struggle of more than two decades, behind those walls:

“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. Oftentimes, racial comments were made to me,” wrote Henry, who was Black. “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.”

Henry and Jean Jeffers Wesley, with Britnie Barmore on her wedding day. Credit: Photo courtesy Britnie Barmore

Today’s services will be overseen by Pastor Reggie Smith, an old friend of the Wesleys. Smith went to work in 2005 as a staff member at the Resource Center. When he started, he assumed his mission with Henry was to serve as an instructor, and to provide support. Smith soon learned those roles were totally reversed.

“The world is backwards,” he said, speaking of widespread misconceptions about people with disabilities. “We think we’re teaching them, but they’re the real teachers.”

Bit by bit, Smith learned Henry’s story — how he never received any therapy at Willowbrook to help with his condition, how he was forced to crawl from place to place along dirty floors until he finally received a wheelchair at 13, how he was routinely treated as if he had intellectual disabilities.

The truth, Smith recalled, was exactly the opposite.

“His mind was one of the strongest minds I’ve ever experienced,” Smith said, noting with astonishment how Henry — rather than becoming bitter, once he made it out — somehow found perspective and empathy in his suffering, which he channeled into an unforgettable aura of love and soul.

In a world where it is easy to lose track of what matters most, Smith recalled how Wesley woke up every morning joyful about his independence and grateful for being with Jean — a sense of love and appreciation he passed on to anyone ready to receive it.

“I’ll never ever meet another person like him,” said Smith, who’s worked with many Willowbrook survivors as part of his longtime role in helping to oversee the Willowbrook consent decree, signed a half-century ago this year by then-Gov. Hugh Carey. It requires New York state to care for every resident who had been confined in Willowbrook, and to do everything possible to guarantee they spend their day-to-day lives in “the community-at-large.”

Given that chance, Henry flourished. He finally made it out of Willowbrook in the early 1970s, amid an accelerating civil rights movement that elevated the dignity and independence of Americans with disabilities. In 1987, Henry settled in at the Resource Center, where he learned to tell his story using a Dynavox machine, which enhances communication for people with disabilities — and where Henry became a pioneering champion of self-advocacy.

Andrew Marcum, an historian and academic director of disability studies at the City University of New York, said Henry embodied the landscape-changing power of survivors and witnesses to the misery inflicted within institutions. Their stories and testaments, over the last half-century, have pushed a nation toward recognizing the “full humanity” of every American.

Henry Wesley: He survived the Willowbrook State School and went on to educate generations. Credit: Photo courtesy Britnie Barmore

That long campaign is hardly over. The danger symbolized by Henry’s death, Marcum said, is what often happens with the loss of such first-hand narrative. Today, many people with disabilities — through the assistance of direct service providers — receive daily support in order to lead typical lives, in the larger community.

The threat of impending cuts to Medicaid and the larger federal safety net leaves many advocates worried about the fragility of that hard-earned chance at independent living, Marcum said — because without that layer of support, a generation of Americans with disabilities could be pushed toward nursing homes and hospitals.

“The question now, if we don’t have that leadership or vision, where do we go?” Marcum said of losing champions like Henry, who saw the full horror of what can happen when people with disabilities are shunned or treated as outsiders. To Marcum, whose own experience with cerebral palsy gives him keen perspective, you can sum up Wesley’s significance within a national movement in one sentence:

“If there’s nothing about us without us, Henry is the ‘us.’”

Barmore, a Resource Center staff person who worked for years with Henry and Jean, said she watched with admiration as the couple routinely opened minds and changed perceptions. Barmore was at their side during many public talks and presentations, a connection that soon evolved into deep friendship, which is how Barmore became a key figure in an effort of tremendous meaning to Henry and Jean.

For years, the couple believed their birth families had abandoned them as young children at institutions, a source of searing grief. In the final years of their lives, by joining DNA networks and doing some intense research with Barmore’s help, they both managed to meet those birth families — and learned the true stories were far more complicated than simply being left behind.

The late Jean Jeffers Wesley, with the marker honoring her mom, and an aunt and uncle, that Jean always hoped to place on her mother’s grave. (Photo courtesy Britnie Barmore)

While Henry’s mother was dead by the time he signed up for AncestryDNA, that decision led him to finding close relatives in the Carolinas and Florida. They were overjoyed, because they had wondered about his fate since he was a child — and swiftly embraced him as part of their family. Their names are proudly listed in Henry’s obituary.

Jean, through a similar process, learned her mom never surrendered her into care of the state. Instead, Jean’s mother — who cleaned homes in New York City for a living — endured a difficult childbirth with Jean and died less than a year later, which is when Jean was sent, as an orphaned infant with cerebral palsy, into the purgatory of “state schools.”

A few years ago, after discovering the details of that chronology, Barmore joined Henry and Jean on a journey to Mount Olivet Cemetery, in Queens. They found the grave site of Jean’s mother, Maria Sybacia Agatha Jeffers. She was buried alongside several relatives, all without any marker on their graves. Jean made a decision, on the spot: She would buy her mother a stone that reminded the world of how Helen lived a life of meaning, and then Jean would return to see that marker put in place.

She died in 2023, before she could make that trip. Henry, with fierce love for his wife, saw the shared commitment of the mission: The stone represented not only a daughter’s devotion, but pushed back against a system that for all too long buried countless lives in the contempt, neglect and apathy of the “state school” system.

Henry dreamed of returning to New York City and setting down that stone for Jean, but his fragile health made that journey impossible. While his death this week touched off a cascade of reverent farewells, Barmore knows exactly how she’ll honor a couple whose lives are an American lesson in courage and inspiration.

“They made me a better person,” said Barmore, who will find a way — for Jean and Henry — to make sure that stone goes up. 

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Sean Kirst is a columnist with The Central Current. He has been an Upstate journalist for more than 50 years. He held his first reporting job as a teenager and worked for newspapers in Dunkirk, Niagara...