Mary Derby 1933 - 2022

On September 1st, 2022, Mary Derby — outspoken advocate, devoted mother, passionate community member — passed away peacefully in her hometown of Geneseo, NY.

I had the tremendous honor of writing my mother’s eulogy, which I’ve included below. I may not have all the details right, but I hope I’ve captured a glimmer of the incredible woman that she was and is.

EULOGY

I want to tell you all a story about my mother.

It’s a story about a woman who wanted ordinary things, but was given an extraordinary challenge, one that would force her to make impossible choices every day.

A woman who never knew the strength of her voice until she found herself on the front lines of a battle with the most powerful men in the State of New York.

A voice she knew must be loud enough to speak for the people she represented, many of whom, including her own daughter, had no voice of their own.

A voice that would forever transform the way people with mental and developmental differences are treated in our world.

Mary Derby moved from her hometown of Wauwatosa, Wisconsin, to Geneseo in 1957 with her husband Bill, who’d just been hired as a history professor at the college. They settled into a small house on Center Street where they raised their first three children: Connie, Paul, and Martha. Mary believed she’d won the parent lottery with three easygoing, self-possessed kids. She said all she had to do was put a stack of picture books in their cribs at bedtime and they’d read themselves to sleep.

Then, in 1962, Margaret was born, and everything changed. She was blind. Her brain had never fully formed. She would never walk or talk. Their pediatrician urged them not to squander the time they had with Margaret searching for a cure. “Take her home,” he said. “Love her for who she is, in the best way you can.”

They drove Margaret home in stunned silence. Mary’s dream of raising the picture-perfect family was forever shattered. But they were determined to follow the pediatrician’s advice, to love Margaret in the best way that they could. But caring for a “medically frail” child in a community with little access to healthcare services, on top of raising three other children, was a daunting task. 

To solve this problem, Mary forged the first of her many superpowers: networking.

She connected with other parents of developmentally disabled children in the neighborhood. They gathered in each other’s homes to share their challenges and triumphs, to trade resources and references. They became known as the “mothers mafia,” eventually transforming into the Livingston Wyoming chapter of what was then known as the Association for Retarded Children.

Mary gave birth to Jean in 1963, and Phil came along four years later. 

As Margaret grew older, her care became increasingly complicated. And then, in 1969, she suffered a stroke that made it all but impossible to keep her at home.

Bill and Mary faced the gut-wrenching reality that it was time to place Margaret at the Craig Developmental Center in Sonyea, a state-run institution eleven long miles from Geneseo.

The first nights Margaret spent at Craig were agonizing for my parents. They feared they’d sent their child into the snake pit. But what they found over time was that the staff at Craig was as loving and considerate as a parent could ask for. Craig became a second home for them. They visited Margaret as often as they could. They sang songs to her and held her hand, and she beamed from ear to ear whenever they were with her.

But as they adjusted to this new life, storms of change were gathering on the horizon. President Reagan’s “War on Drugs” campaign stoked a feverish quest to build new prisons. And for New York State officials hungry for the jobs and revenue that these prisons promised, the buildings of Craig looked like fresh meat.

Mary had heard rumors about Craig being closed. She tried to dismiss them, but inside she was afraid. Where would the state send Margaret if Craig was shut down? Would she and Bill have to travel hundreds of miles just to see her? And what about the jobs of all the wonderful people she knew at Craig? A closure would destroy their whole world.

And then, on May 25th, 1982, fate would deal Mary an unusual hand. On a routine visit to Margaret, Mary spotted a delegation of state officials touring the facility. Among them was the State Commissioner of the Office of Mental Retardation and Developmental Disabilities.

Something felt strange about this group of men in suits poking around on what had become Mary’s home turf. So she followed them down the main corridor to eavesdrop.

As the men walked, completely oblivious to the presence of this woman trailing them like an MI5 agent, Mary watched as a single sheet of paper came loose from a bundle under the commissioner’s arm and drifted to the floor… Right at her feet.

The men moved on. Mary cautiously knelt and picked up the paper, her heart fluttering.

It was a memo confirming that Craig was to be turned into a medium security prison over the next three years. All Craig residents would be “relocated,” the memo said, with no specific plans indicating where or when.

Mary froze. Her worst fears had come true. The state was evicting her child — and doing so in the shadows, unilaterally, without any legislative oversight.

Her astonishment turned to pain. And the pain turned to anger. And as many people in this church today know, if there’s one thing you don’t want to see in this world, it’s an angry Mary Derby.

She pocketed the memo, rushed home, and called the Rochester Democrat & Chronicle.

They sent a reporter down the next morning, and that night, the leaked memo made the front-page headline: “Craig Center Will Become State Prison.”

In the article, Mary is quoted as saying, “I find [this action] so totally objectionable that I will use every imaginable resource available to fight it.”

And she did.

Over the course of the next year, she would form an advocacy group called Friends of Craig United in Service (or FOCUS) to fight the closure. This battle eventually took her all the way to a conference room in the Albany state house where she would come face-to-face with newly-elected Governor Mario Cuomo.

Cuomo had inherited the backroom prison-expansion deal his predecessor Hugh Carey had made, and he knew it had to be dealt with, but he had no idea who he was up against as he strode into that conference room to find Mary Derby sitting at the other end of the table, her piercing stare burning a hole in his forehead.

Did Mary ever picture herself facing off against this powerful man in a battle to protect the lives and livelihood of hundreds of families in her community? Could she have dreamed that her passionate testimony that afternoon would convince Cuomo to restructure Craig’s closure in favor of its residents and caregivers? That, just a few years later, Mary and Bill would be able to place Margaret in one of the many community-based care facilities the state built to permanently replace the institutional model — a transition that Arthur Webb, the State Mental Retardation Commissioner called the “most important movement in our field in 150 years”?

Mary herself would tell you, unequivocally, “no.” She’d grown up amid the chaos of the Second World War. She craved the normalcy and security that consumed the Cold-War generation: A family. A house with a tidy yard. Summers by the lake. A Christmas tree glowing in the window.

Like all of us, she struggled with the tension between the ideal life she imagined and the tangled, inscrutable one she found herself navigating. She worried that the vital work she took on for her community — much of which would never benefit Margaret directly — robbed her of the energy required to be the perfect mother and spouse, and vice versa. She never felt she could adequately give herself over to one without sacrificing the other.

When I was ten, she overheard me tell a friend’s parents that “my mom works at Craig.” This became a story she’d often tell to illustrate how the battle over Craig consumed her life. It always got a laugh, but when I look back on it now, I see that it concealed a deeper anguish: The toxic, unkillable anguish that our culture forces on women who dare to lead.

She never had the support of a just and democratic society that honors the tireless effort of the women who’ve shaped it. But Mary had her faith. And faith, for Mary Derby, was not a given. It was not something you earned by birthright or by rote attendance at Sunday Mass. Faith was a verb — An active inquiry into the ongoing, mysterious, and dynamic conversation with God — a daily quest to understand the fundamental force of love that binds us together.  

It was this faith that kept Mary and Bill together through the many challenges of raising Margaret in a world that treated the disabled as less-than-human. It allowed them to see beyond themselves, to co-create a community. Their faith has inspired others to put care and consideration in front of fear and hatred. And that inspiration lives on through all the people gathered here today. 

And although she judged herself harshly as a mother, she gave her children innumerable treasures of experience and insight that fundamentally shaped us. For Connie, she demonstrated the joyous discipline of faith. For Paul, it was Jon Gnagy’s “Learn to Draw” art kit, which opened his eyes to the beauty of the world. She persuaded a skeptical Martha to watch Brigadoon, perhaps knowing already that musical theater would become the life preserver that would carry Martha through the gauntlet of high school. Jean’s career as a speech pathologist stems from the patient, loving way Mary helped her with an early learning disability. And Mary went so far in supporting Phil’s interest in music as to be persuaded by Buzzo that Phil “absolutely needed” the banned version of Electric Ladyland by The Jimi Hendrix Experience — the one that featured dozens of naked women on the cover. I still want to know how Buzzo managed to do that.

And for me, there were the books she read to me at bedtime. The Chronicles of Narnia. Bridge to Terabithia. Island of the Blue Dolphins. The cobalt seas and deep forest clearings, the soaring vistas and noble spires of Cair Paravel she rendered with her voice are as vivid to me now as they were when I sat nestled in her arm, consumed by her words.  

And now, what happens next is up to you. You are all conduits of Mary Derby’s spirit. It is a bottomless resource of love, compassion, and understanding that you can draw from at any time, to help you navigate the most turbulent seas, the most perilous night. All you need to do is remember how one ordinary woman faced the storms of change not by running for shelter, but by catching the lighting in her fist and drawing it back like a notched arrow in a bow.

We Did It!

Speechless. Dumbfounded. Humbled. Dazed. These are just a few of the many ways to express how we’re feeling in the wake of a cosmically big-hearted donation from an anonymous donor that, in one fell swoop, sent us across the threshold of our $10,000 campaign goal.

Our gratitude to this incredible individual — and to all of the other amazing friends and family members who have helped us realize this goal — defies physics in its depth and breadth, and the words to express our thanks just dissolve on contact with the atmosphere. With your generous support, we can now establish an endowed fund that will ensure that Bill and Mary’s names will forever be linked to the causes that they’ve fought to support over the past sixty plus years.

Our next step is to work with the Community Foundation for Greater Buffalo to establish the endowment. Stay tuned for details.

Thank you all so much for helping us reach this goal. You are all truly amazing people. Our love and appreciation cannot properly be expressed in words.

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Week Two of our GoFundMe Campaign!

Week two of our campaign saw more generous contributions from friends and family far and wide whose lives have been impacted by the work Bill and Mary have done in the fields of education, disability services, and charitable giving.

If you haven’t had a chance to read about Bill and Mary’s daughter, Margaret, and how she inspired them to advocate for the rights of the developmentally disabled and their families at a time when services and support systems were scarce at best, you can check it out here.

We’re incredibly humbled that the following donors have helped us push toward the halfway mark to our $10,000 endowment goal for The Derby Fund. A great big thank you goes out to the following amazing people:

Anne Roth-Blizzard

Andrea Wenz

Debbie Kirsch

Stephen Graceffa

Paula Krebs

And our anonymous donors!

If you haven't already, please consider a contribution to The Derby Fund in any amount. Thank you!

Mary Hope Derby

Shortly after Margaret Derby was born, Bill and Mary learned that she was blind and suffering from several developmental disabilities. She would never walk, talk, or have the type of childhood that her siblings enjoyed. Their pediatrician advised them to take Margaret home and to love her in the best way that they could.

This was the early 1960s, decades before the Americans with Disabilities Act; there were very few programs or services in the area to provide support for Margaret or guidance for the Derby family as they navigated their new life together.

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So Mary decided to take matters into her own hands. She reached out to other families in Livingston County who were raising children with physical and developmental disabilities, and together with the local chapter of the ARC, they established a residential home in Geneseo that would allow their children to live and work directly in the community. This residential model would spread throughout the state and the nation, forever changing the way people with disables are treated and served.

Although Margaret’s disabilities were so severe that she would never directly benefit from the residential services Mary and Bill fought so hard for, her life and spirit inspired them to continue fighting for the rights and support of people with disabilities even after she passed away in 1988. Today, the residential care model that Mary and her friends struggled to establish in Geneseo has become the norm, and all of the massive, sprawling institutions that defined mental health care in the 20th century have been shut down.

Margaret’s life - and the effect she had on her community - was commemorated when, in 2010, a special residential care facility in Retsof, New York, was named The Hope IRA, after her mother, Mary Hope Derby, who has fought for the past fifty years to ensure that no family will ever feel as isolated and scared as she and Bill felt when they took Margaret home from the hospital.

Please consider making a contribution to The Derby Fund so that we can support organizations such as the Arc of Livingston-Wyoming in honor of the work Bill and Mary have done throughout their lives.

Bill and Mary at the dedication of the Hope IRA in 2010

Bill and Mary at the dedication of the Hope IRA in 2010

Week One Recap

We’re absolutely stunned at the end of our first week of The Derby Fund endowment campaign. With the early support of our “Week One Heroes,” we’ve been able to raise over $1,000 toward our $10,000 endowment goal. We’ve still got a long way to go, but the generous contributions of the following donors have meant the world to us and we are eternally grateful for their support. Massive virtual hugs go out to the following amazing people:

Gary DeBolt

Michelle Ryan

Kathleen Houston

Jill Conlon

Anne Sturtz

Lucy Hope

Sarah Hope Hampton

Jeanne McDonald

Edan Cohen

If you’d like to contribute to The Derby Fund, please head to the GoFundMe campaign and make a donation in any amount. Thank you!

Giving Tuesday

Day One of the campaign to endow The Derby Fund was a huge success! Giving Tuesday is a challenge: with so many great organizations calling out for help, it can be difficult to choose which of them to support. So it’s with our deepest gratitude that we want to call out our “Giving Tuesday Heroes” for their Day One support!

Edan Cohen, Jeanne McDonald, Sarah Hope Hampton, Lucy Hope, Anne Sturtz, and anonymous donors, thank you all so much for your generous contributions to our effort. A massive virtual hug goes out to all of you from all of us!

Thanks, also, to all of you who shared the site and campaign with your friends and families (I’m looking at you, Zooey!). Spreading the word about our campaign is crucially important, and your efforts have not gone unnoticed.

Thanks again to all those who’ve supported this effort so far, and to those who plan to support us in the near future - consider giving today!

(The banner image shows most of the Derby family on the 64 Second Street porch back in 2012 - Missing from this photo are Jean, Tom, Josh, and Allison, who will appear in future images!)

Our Campaign is Live!

We’re excited to announce the launch of a GoFundMe campaign to help us reach our goal of endowing The Derby Fund. Once endowed, the fund will provide ongoing support to the causes and institutions Bill & Mary have been most passionate about. As the fund grows over time, it will become stronger, and its impact on the organizations it funds will increase.

Your donation will ensure that Bill & Mary’s names will always be synonymous with education in history, support for the physically and developmentally disabled and their families, and Catholic Charities.

Make a Donation Today

The Derby Fund Website Launch

The Derby Fund begins its journey today with the establishment of this site. Our primary goal is to reach the $10,000 required to established an endowed fund, which will support the institutions most important to Bill & Mary into perpetuity. We will soon be launching a fundraising campaign to raise awareness and make it easy for people to make a contribution in honor of Bill & Mary Derby and their lifetime of dedicated service. Keep watching this site for details!