First published in 1985, Everyone Here Spoke Sign Language is now widely considered a landmark disability study. Tracing hereditary deafness on Martha’s Vineyard, a coastal Massachusetts island, Nora Ellen Groce discovered, in her historical investigation, an uncommon incidence of deafness over multiple generations on the island, but also that deaf residents were accepted and involved in every aspect of island life. Groce’s research was also significant for her use of oral history, for she interviewed and recorded many elderly islanders about their deaf neighbors, and a bygone era where, out of necessity, residents learned and used sign language to communicate.
Everyone Here Spoke Sign Language is reviewed as a Classic Revisited in the Spring, 2025 issue of the Oral History Review, part of a special section on oral history and disability. Nora Ellen Groce, currently the Leonard Cheshire Chair and director of the International Centre for Disability Research at University College London (UCL), recently spoke to Media Review Editor Bud Kliment about her book, oral history and her work after it was published.
This interview has been condensed and edited for clarity and readability.
OHR: Is it true that Everyone Here Spoke Sign Language has never been out of print?
Nora Groce: It hasn’t. It’s been in print 40 years. There was a new Japanese version that came out last year, there’s a German version. It’s used regularly in social science and disability studies courses and some history courses, also human rights courses.
OHR: Did you have any idea that it would have this long a life?
Groce: Oh, no. It was my doctoral dissertation, and I made a shorter version. I kind of wrote it as a book, as many anthropologists do. I wavered between thinking “my mom won’t read this” and “when they make it into a movie…”
When I did the work in the late ‘70s, early ‘80s, the idea was that you’d be lucky to get an article out of your thesis, let alone a book. So, I’m very pleased to see it still in print. On Martha’s Vineyard itself the study is very well known. There are Vineyard tours that go to places relevant to the history of the deaf people there.
OHR: Do you know who takes the tours?
Groce: There’s a deaf community who view deafness as a form of heritage and a social network, but they’re a component of the broader disability community that includes disability rights advocates, people interested in disability history, human rights and other things. Also, a lot of people who are interested in local New England history. It’s just really quirky. If I had found a similar community in a remote island in Polynesia, I think there would have been interest. But because I found something under everybody’s noses, you know, 80 miles from Boston…
OHR: The Vineyard is an island with a long history, which was often passed down orally by local families over generations. Coincidentally your investigation is launched when a resident, Gale Huntington, casually mentioned a pair of deaf brothers who lived there.
Groce: That’s how a lot of research is done. My husband played music and worked on the schooners up in Camden, Maine. He heard through the grapevine that there was an old guy on Martha’s Vineyard who still remembered working as a deckhand on the schooner Alice Wentworth. We were grad students at Brown, and it was actually our second date, and he said, “Well, I talked to this guy. I’m going to go out and meet him.” And it turned out to be Gale Huntington, one of the island historians. So, in terms of oral history, I was really fortunate. I actually have his picture up here in my office and I dedicated the book to him.
OHR: Did you know that oral history was going to be such an important part of your project? You also did document research, and medical research.
Groce: I was a graduate student. I got my undergraduate degree in anthropology, actually anthropological archeology, at the University of Michigan. Then I went to Brown University. And while I was at Brown, I got very interested in oral history and folklore.
I think of myself as just an old-time anthropologist. What I did was just basic anthropology, although we could label it oral history. We used to call it triangulating data. I knew that there were different parts of the story, and I was trying to get a story in place.
So, I looked at the available written records, but there wasn’t a lot. Up island a lot of the records had been destroyed in a fire, and some of the town records had been stored in the town’s outhouse.
What I did was ask a really basic anthropology question or oral history question, which is what was life like for these people? How do you communicate with each other if a substantial number of people are living with a disability in a community?
And over the course of about three years, I interviewed everyone above the age of 70 on the entire island who remembered any of the old-time deaf people, which was just about everybody up island. Most of the people I interviewed were in their 70s, 80s. The oldest one was, I think, 109. So, I was dealing with people who had been young people at the turn of the century, the end of the Victorian era, just trying to get by.
And of course, what I found was that these were very pragmatic Yankees. The term I use a lot when I work on disability issues is “enlightened self-interest”. They weren’t doing it to be nice to disabled people, nice to the deaf folks. They were doing it because a certain number of people are going to be deaf and so what are they going to do about it? We need to speak to our neighbors, you know.
The issue was, if everybody adapted slightly to the disability rather than what we often ask, which is that disabled people do all the adapting, then everybody benefits. People who are disabled can fit right into the broader community.
I couldn’t quite describe it because at the time there was nothing, there was no disability studies. There was really nothing in medicine or genetics that would ask people what it was like to live with genetic Issues and there was not much in the way of sign language studies, although most of the people who spoke sign full-time, the deaf people, had died by the time I collected the data.
I wanted to know about people’s lives. I was doing genetics, I was doing oral history, I was doing local history, I was doing anthropology. I was doing what is now disability studies. The work just fell through so many cracks, but it was a coherent story.
OHR: The book helped to launch your career, advocating for the disabled.
Groce: A lot of the people I work with now think that I’m kind of a senior figure in global disability studies. A couple years after I started my thesis, I helped Irving Zola at Brandeis to set up the Society for Disability Studies. And for 20 years I helped to run the Global Health Master’s program at Yale. I’ve worked on a lot of global disability projects. Me and like 400 of my closest friends and associates helped to write the UN Convention on the Rights of Persons with Disabilities, which set global laws. Especially in the States, people know me for the Vineyard stuff, but beyond that, I’m more known for some of the bigger disability public health initiatives I’ve worked on. Importantly, I’m not disabled myself, so I’m very careful not to speak on behalf the disability community but I can say basically that I’m generating ammunition for them.
OHR: As the field grew, you grew with it.
Groce: What happened, I guess, was that when I did this work it was just at the beginning of the American Disability Rights Movement. And disabled people were starting to say, it’s not us, it’s the surrounding society. And the response to them was consistently, yes, but there’s no place in the world where disabled people are not marginalized or whose lives are not harder. And so here I found a shining example of someplace that was, again, 80 miles from Boston.
Early I got very involved in US and then global disability rights. And then broader human rights issues. I guess the book set the tone of the research I was doing. Of course, some of the language in it is quite dated, you know, disability rights has moved on.
OHR: You continued to use oral history in your work?
Groce: I work with really marginalized groups. I went out and did oral histories and collected data on disabled street beggars, a big project for the International Labor Organization about who winds up on the streets begging. In Addis Ababa, the capital of Ethiopia, I sat with disabled street beggars for a long time and collected their stories. I also did a lot on the impact of the global AIDS epidemic on people with pre-existing disabilities.
I’m not an oral historian. I pick issues that I think are important and do applied research but I’ve always done it as an activist. And I think that was set by what I did on the Vineyard.
OHR: You recently published an article in the Journal of American Folklore on folklore and disability. What do you think about the relationships between oral history and folklore and anthropology?
Groce: I think that oral history has a tremendous amount to offer. It can give us a good storylines and insight into how people think and feel. And I think that it’s very closely allied with anthropology, and with folklore. I see them as kind of a seamless whole.
The issue is what people think and what people think about their own communities. If you’re going to study a community, some of the stuff you’re going to collect is oral history, but folklore is going to influence it, and culture and society will influence it.
I think oral history and folklore are really powerful tools in understanding the world. We sometimes think that they’re not powerful tools, but in fact, there’s nothing more powerful. They’re how people shape the world around them.
I’d like to see them be more applied to solving real issues in communities–people’s health, well-being, access to social justice. There are issues that impact people with disabilities or other groups at risk that you need to understand better.
OHR: Are there any lessons that you learned writing your first book that you’ve carried with you?
GROCE: Writing style. I think you have to engage people. I mean, you can explain theory, you can make something very conceptually complex. But it’s your job as a writer to make it readable and understandable. What you want is clarity so that people will be engaged and read what you write and what you have to say. You’re going to all this trouble to write it up. You might as well get people to read it. If it’s a good story, you should be able to tell it is a clear story.
In 2024, Groce donated her interviews and related materials from Martha’s Vineyard to the Library of Congress’ disability collection.