Ed Orzechowski

How Can Non-Disabled People be Better Neighbors to Disabled People?
Ed Orzechowski and the stories of his disabled neighbors

ALEX GREEN
MAR 02, 2025
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Many of the supports and services that the government directs to disabled people in America are under threat today. There is no question that these things exist because there are disabled people who need assistance that can best be provided by the government. But too often we confuse the necessity of government supports with the idea that they alone are sufficient for disabled people to truly lead equal lives in our communities. That's not the case and the result is that disabled people often live unnecessarily isolated lives. For that to change, we need family, friends, and neighbors who help us push back against the tendency toward selfishness and isolation that defines so much of American life and does so much damage to the disabled.

I am interested in the actions of people who understand this and take an active role in the lives of their disabled neighbors. Ed Orzechowski and his wife Gail are two of them. Gail's sister is intellectually disabled and through their experiences with her, Ed and Gail have found a large, multi-generational community of people whose lives were shaped—and often deeply harmed—by the Belchertown State School, a once-massive institution for intellectually and developmentally disabled people in Central Massachusetts, where the first legal movement toward de-institutionalization in the state began.

A former journalist and high school English teacher, Ed has spent more than a decade sitting with former inmates of the institution and helping tell their stories. These partnerships are so necessary because it can be deeply traumatic for many people to recount the stories of what they've endured, even when they want to tell them. Ed's work has led to two books that tell deeply humane, powerful stories of two individuals who wanted to tell their stories and found friendship and partnership in doing so with him.

Written in the first person, Ed has made it clear that he is acting in service to his friends who want their stories told, and the results are stories that would otherwise never be told. That's why this week's edition of (Un)Hidden, which continues below, is a short reflection from Ed and an excerpt from his newest book with Darlene Rameau, Becoming Darlene: The Story of Belchertown Patient #4952 [copies can be purchased here].

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Author's Note by Ed Orzechowski
 
My wife Gail and I were co-guardians for her sister Carol, who passed away in 2022. Carol had severe autism and was non-verbal. In the 1960s, she was a resident of the former Belchertown State School, an institution in western Massachusetts that became infamous for neglect and rampant abuse. Gail and I joined Advocacy Network, a nonprofit dedicated to the rights and care of individuals with developmental disabilities.

Benjamin Ricci, whose son was also a resident of Belchertown State School, was the driving force of the organization. Ben led parents, other relatives and guardians, in spearheading a class action lawsuit in federal court about the inhumane conditions at Belchertown. Ricci v. Greenblatt gained national attention. In 1973, Judge Joseph L. Tauro issued a Consent Decree that led to significant improvements. He maintained oversight of the case until Belchertown State School closed on December 31, 1992.

It was through Advocacy Network that I met a man named Donald Vitkus, who asked me to help him write his life story. Days after he was born, Donald's unwed mother placed him in foster care. When he was three years old, testing indicated that he had an I.Q. of 41. At age six, he was sent to Belchertown, where he was labeled "retarded," and he grew up in the institution.

Together, Donald and I wrote You'll like it here—The Story of Donald Vitkus, Belchertown Patient #3394. He and I were discussing book events at a coffee shop when a woman approached us from a nearby table.

"I couldn't help overhearing your conversation," she said. "I grew up at Belchertown, too."

She and Donald exchanged memories, and I gave her a copy of his book. As she was about to leave our table, I told her there were a number of photographs of the institution in the back pages. When she turned to those images, her hands began to tremble. That woman was Darlene Rameau, and this is her story.

—Ed Orzechowski

(Un)Hidden: Disability Histories and Our World is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

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Chapter 1: Ginger and Wilfred
 
If nothing more, Ginger Rameau was productive. With a little help from her husband, Wilfred, she turned out a kid every year or so, and I was number eight. My parents were living in Fitchburg, Massachusetts, at the end of World War II. Fitchburg was a mill town, a place that made clothing, machinery, and potato chips. Ginger and Wilfred made babies. At the end of production, there were fourteen of us.

When my older siblings did the math, they figured out that our mother was about thirteen when she got married. She was 24 when I came along, about a year after Marie, who died in infancy. That's how I got my middle name.

I was born Darlene Marie Rameau on August 30, 1956. I've been told I was so small that my brothers tossed me around like a football.

When I was little, a social worker wrote:

Her parents are Wilfred J. and Virginia (Jordan) Rameau. . . .

Darlene was born prematurely at seven and one-half months

and weighed three pounds. . .

I know I am French-Canadian, but the details are murky. My father apparently came down from Canada. Wilfred had a sister, Dorothy, and two brothers—Frannie and one called "Spider." My mother was from New Hampshire. Her first name was Virginia, but she always went by Ginger.

That's all I know of my family tree. We don't exactly go back to the Mayflower.

I don't remember living with Ginger and Wilfred, and I never considered them my parents. I've always said that I fell from the sky and someone found me under a tree. I would have been better off if that's what really happened.

The same social worker later wrote:

A representative from the Massachusetts Society for the Prevention of Cruelty to Children was sent to investigate the Rameau home when Darlene was three years old. The abstract in her record states that, "it was found that Darlene had been segregated from the rest of the family in a filthy room where she soiled and wet her bed and was treated like an animal. She was unable to walk and was not toilet trained."

So I was shipped across town to live in another house. And that's when the voices began.

[You can purchase a copy of Becoming Darlene here and You'll Like it Here here.]

(Un)Hidden: Disability Histories and Our World is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.

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