Jane Diers Wong grew up in a family that told stories. Her grandmother had been raised in Duluth, and every summer of her childhood, Jane went along when her grandmother returned there to visit. Jane says she could almost predict which stories her grandmother would tell during those visits-about growing up and about events in the family’s past. Then in the mid-1990s, Jane’s mother became gravely ill due to complications from rheumatoid arthritis and breast cancer, and Jane realized that “if we don’t start writing these stories down, we’re not going to have them any more.”
So began Jane’s ongoing project, with no idea how her findings would improve old family stories and create a new one. Several relatives on her mother’s side gathered pictures, located records and newspaper articles, and collected stories. As Jane’s mother’s health improved, Jane’s task was to record the stories her mother told.
Both Jane’s mother and grandmother recalled that Jane’s grandfather had a sister with epilepsy, who was sent to the Faribault State School and Hospital in Faribault, Minnesota. Neither of them knew the sister’s name, but both remembered Jane’s grandfather saying that the family kept the situation a secret as though it were somehow shameful.
As Jane, her mother, and an aunt and uncle gathered information about the family’s past, they learned that Jane’s great-aunt was named Bertha Flaten and that she had been born on January 14, 1875-but they couldn’t find out where she was born or where she had been buried. Jane’s uncle speculated that Bertha might have been buried at the state hospital, since many of Minnesota’s institutions had cemeteries.
A small article in the Minneapolis Star Tribune led Jane to contact Remembering With Dignity (RWD). Established in 1994, RWD is a coalition of disability rights and advocacy organizations whose purpose is to honor those who lived and died in Minnesota’s state institutions. Jane learned that this group had begun a project to remember over 10,000 Minnesotans with developmental and other disabilities, who as “inmates” or “patients” often lived the majority of their lives in one of nine large institutions throughout the state. They were buried, largely anonymously, in neglected cemeteries, their numbered markers now overgrown with weeds.
Remembering With Dignity was able to quickly tell Jane that, indeed, her great-aunt Bertha was buried at Faribault in one of the earliest graves dug at the older of the two cemeteries and that her gravestone held only the number “7.”
In 1997, Remembering with Dignity received its first funding from the state Legislature to replace numbered gravestones with markers bearing each person’s name and dates of birth and death at the two Faribault State Hospital cemeteries. In the fall of 1999, Jane and other family members attended a ceremony in the West Cemetery at the Faribault facility. Jane spoke to those in attendance about what little she knew of her great-aunt, and put a rose on Bertha’s new named marker.
In search of more information about Bertha, Jane made several visits to the Minnesota Historical Society, the repository for the scores of boxed records kept by the Faribault State Hospital until its closing in 1998.
In the first box Jane searched, she found the record of Bertha’s admission with a picture of Bertha attached-the only one she has ever seen. “The picture of her, she’s in a white dress that’s a little short in the sleeves, so you wonder if it’s a dress she had, or if it’s a dress they gave her to wear for the photo. She looks scared. I’m sure it was a big change for her to not be with her family. I’m sure it was very hard.”
Jane’s great-grandparents, Toston and Randi Flaten, immigrated to Minnesota from Norway and Bertha was their first child. At age two, Bertha contracted whooping cough and had a seizure that lasted eight hours, causing some paralysis on her left side. She didn’t have another seizure until she was eight, and then she had them every three or four days. Today, such seizures could be controlled, but back then the only treatment was chloroform, which the family stopped giving her because it didn’t help. Despite the seizures, Bertha worked at her father’s dairy store across the street from Ingebretsen’s in Minneapolis, and she worked as a domestic.
Jane speculates on why, in 1892, Bertha’s parents started the process to have her admitted to the Faribault hospital. “You wonder, what must they have been going through? I suppose if the seizures were becoming more frequent, they probably could not care for her. I don’t know what affect the seizures might have had on her. They may have caused some damage to the brain, so maybe she was able to take care of herself less and less.”
When Bertha was sent to the institution in 1894, it was called the School for Feeble-Minded and Colony for Epileptics. At the time, it was home for a few hundred residents, but three decades later, the number had risen to over 2000.
Jane says, “We think very badly of these state institutions, but when they started out, that wasn’t necessarily the way it was. They were making a contribution to people who were handicapped, providing education and training, and then they got so big that it became a horrible, horrible thing.” Bertha attended school at the institution for one term, but she couldn’t continue because of her “fits,” as they were termed in that era.
From years of careful records kept by the staff at Faribault, Jane learned a great deal about Bertha: she was able to walk and talk, she could read but not write, she could catch and throw a ball, she could tie her shoes, she was sensitive to pain and cried easily, and she was industrious and of good moral character. “Through her medical records,” Jane says, “being able to just read that she was left-handed and what her likes and her dislikes were, and just some everyday things that she did, you feel like you really knew her. Where some of the relatives that I have, even my great-grandparents, I feel like I know Bertha more than either of them, because what I know about them is through stories, which is good, but what I know about Bertha are facts that have been recorded.”
Jane speaks about the impact of going through those records at the historical society and “…the insights that gave us about the family. We never knew my great-grandfather had gone back to Norway, but in one of the letters he writes to the hospital, he says he had just returned from Europe. I can’t explain what it’s like to know, at that moment in time, exactly what they were doing, and yet that was a hundred years ago.”
The records note that before her death in 1905, at the age of 30, Bertha was having 20 to 30 seizures a day. Bertha’s father had died in 1895 from tetanus, and Jane wondered about this-and other factors-that may have contributed to why Bertha was buried at the institution. “I’m sure it wasn’t all that easy, if somebody died, to just have their remains shipped a hundred miles. My great-grandmother was living out in western Minnesota and she had remarried. And I don’t think she could write in English, because most of the time her daughters would write letters for her. I think she was probably pretty isolated herself.
“Some of the numbering, too, was to save face for the families. People wouldn’t know that so-and-so had somebody buried there. Now things are a lot different and much more open. But I still think it’s so sad, just to see a number there with no name. You wouldn’t know No. 7 from No. 290. I just think it’s pretty shameful. It’s one thing to say, ‘I have an aunt who is buried and the only thing there is a number.’ And, it’s another thing to see it.”
In 1999, Jane’s family was contacted by the Smithsonian, and asked to donate Bertha’s original grave marker for an exhibit on disability history. The family discussed it and agreed to the donation believing that “it could do some good.”
Over several years, Jane Wong took an unexpected journey in her search for her family’s past, and she values very highly what coming to know Bertha has contributed to that search. “Sometimes you see members of society that are forgotten. Yet this is an instance in the family where you would say Bertha was someone who didn’t have a significant impact on the family, but she has made a major contribution to what the family knows today about the family back in those early years. I think about the struggle she had in her daily life, and my heart just breaks when I think about it. Yet the good that came out of it-if she only knew then what an important part she played in the family, I think she would be astounded. Sometimes you think you have to make a great contribution in order to be remembered or to be recognized, and how often it is that simpler things in life make for a greater contribution.”
For help in locating a family member who may have been buried at one of Minnesota’s state institutions, contact Jim Fassett-Carmen, Remembering With Dignity, at 651-642-0297 or firstname.lastname@example.org. To learn more about RWD, visit http://www.selfadvocacv.com/.
Marj Schneider became involved with the disability rights movement at age 14 when she joined an organization for blind people. She is the author of many disability-related texts and has taught courses on disability issues since 1989. Marj uses disability history as a vehicle for understanding common struggles and promoting activism.