December 28: Elizabeth Ware Packard (1816-1897)

"Thus the most sensible people on earth are exposed to suffer a life-long imprisonment, from the folly of some undeveloped, misguided person. And the tendency of imprisonment itself is sadly detrimental to a person who has intelligence enough to realize that he is held under lock and key. To persist in treating them as though they were unable to take care of themselves is to undermine self-reliance and self-respect. In short, it tends to destroy all that which is noble and aspiring in humanity..."

--Elizabeth Packard, The Prisoners' Hidden Life [1868], p. 248

Nineteenth-century American patients' rights advocate Elizabeth Ware Packard (portrait at left) was born on this date in 1816. Her pastor husband had her committed to the Illinois state lunatic asylum in 1860, because she was argumentative and disagreed with him on religious matters. Three years later, she was discharged, but it took a court case (Packard v. Packard) to determine that she should not be confined to her home.

Mrs. Packard went on to work for better legal protections for asylum inmates, like the right to send and receive mail; for more oversight of asylum superintendents; and for married women to have the same protections as others under commitment laws. She published her story and her positions in several books, which are available online.

A play and a museum exhibit earlier this year in New Jersey both focused on Packard's personal story and public career.

Marty Omoto, "Remembering the Past"

This is a new commentary by Marty Omoto, director/organizer of the California Disability Community Action Network (CDCAN). I've mentioned before how valuable the frequent email newsletters from CDCAN are; Omoto's personal commentaries are less frequent, but also well worth a read--and because this one is about disability history, I'm even more inclined to share it. (I added links where appropriate.) His email says "It's okay to forward this, just provide attribution." Thanks, Marty! Keep up the great work.-- PLR

REMEMBERING THE PAST: A LESSON IN ADVOCACY
by Marty Omoto (December 2007)

Recently, the remains of about 40 children and adults with disabilities and other special needs, originally buried in unmarked graves during the late 1890's on the grounds of the now-closed Stockton State Hospital (45 miles south of Sacramento) were reburied. They were among the estimated 25,000 children and adults with developmental disabilities and people with mental health needs who lived and died in California's state hospitals between the mid-1880's and 1965.

During that time period, those 40 children and adults in Stockton, like the thousands of others buried in other places at that state facility and other state hospitals, were considered "invisible" members of society and ignored by the rest of the world even when they lived. Those without families to claim their bodies when they died, were often put into unmarked graves and were forgotten as quickly as the last shovel of dirt that covered them.

The California Memorial Project, a collaboration of people with mental health needs, people with developmental disabilities and other advocates, along with state and local agencies, helped to identify those persons forgotten and buried, and to remember them with the respect and honor that they never received in life.

Dick Jacobs, executive director of Valley Mountain Regional Center, observed that recent reburial in Stockton and recalled that during the original excavation of the unmarked graves "...One of the crew reportedly wept openly while exposing the remains of a little girl who was apparently buried with nothing other than the plain shift that 'inmates' wore in those days. Perhaps he was hoping to find the remains of a doll, I don't know."

Remembering the past is always linked to how we live in the present and view our future. The California Memorial Project, like other efforts to remember the past, is also about honoring those who died, and respecting people now. That is something important for all of us to understand, not just in the disability community, but also for policymakers and others in our State and nation.

It also has some important lessons to teach us as advocates and policymakers in the coming months, whether in health care reform or how the State responds to a budget crisis that grows worse each month.

Remembering the Good Things and the Bad
Certainly remembering the past means remembering the good things this country has done and the progress it has made in human rights. Certainly there is much for all of us to be proud of. There is no better country, and no better ideals as expressed in the Constitution than the United States of America.

But the California Memorial Project and other efforts, including remembering the Holocaust or the internment of Japanese-Americans during World War II and other terrible chapters in our past, is important because it also reminds us how often our country has badly treated people because of differences in color, because of disabilities, gender, age, because of mental health needs, because of sexual orientation, because of income status or what other country they immigrated from.

Yes, our country has changed dramatically since that time in Stockton over a century ago, and will continue to change. Hopefully the good changes will outweigh the bad, or at least correct the bad things of the past.

But there are bad things happening now - and bad things that many fear will happen in the coming months.

Another Important Reason to Remember the Past
George Santayana once wrote that "Those who cannot remember the past are condemned to repeat it."

So there is another important reason to remember.

It is important for us to also remember that the rest of the world, and the rest of the country during that time and times more recent, claimed it "did not know". Some people during that time were simply indifferent, because they did not care or had other important things to worry about.

We need to remember that indifference, not hate, as Elie Weisel once wrote, is the opposite of love because it is often more destructive, more insidious and more shameful. Indifference means that good people stand by and do nothing to stop an injustice, to correct a wrong or to cry out for help while another is being hurt.

Indifference is the silence that lies, it is the trust in things that betrays our values. It is the evil that stands by and allows shameful and bad things to happen, whether 100 years ago, or 50 years ago, or here and now.

Less than a half century ago, many people thought it was okay to isolate people who were different either through poverty, because of disabilities or mental health needs or color. Even more people would have claimed they did not know or through indifference claimed they did not see.

They did.

Now, over some 50 to 100 years later , how does that past - and the subsequent things that have happened - matter to us beyond simply remembering the people who died and were treated so shamefully? Or are we condemned to repeat the same mistake again?

Lessons in Advocacy In Remembering Our Past
Frederick Douglass once wrote that "when poverty is enforced, when justice is denied, when anyone feels that government is an organized conspiracy to rob, or oppress them, then no one, no property is safe...."

So the lesson for us to learn in remembering, which is a constant part of our never ending training in advocacy, is that when people are treated as non-entities or not deserving, if a people are looked on as invisible or powerless, then bad things are almost certain to happen to them.

To us.

And yet because we are one community - whether we believe it or not - when that happens, the whole nation, the whole world is degraded. To really honor those who died over a century ago. for those who died more recently up to 1965 in those state hospitals, cast into graves without dignity or respect, means that we need to also remember that decisions on policy that allowed those things to happen, were made by those who "show up" and were allowed to also happen by the people who didn't.

"Showing up" means not just a physical presence, it means that all of us - our families, our friends, our neighbors and co-workers need to "show up" and take action. It means not being silent and not being indifferent.

Now it is December of 2007 and California now faces a $14 billion shortfall that is certain to be addressed by policymakers by massive budget cuts and reductions.

And what is also certain is that pretty bad things will be proposed that impact children, adults and seniors who live in what I have called the "Other California" - people with disabilities, seniors, people with mental health needs, children and families and workers who are poor.

Many good policymakers - and many other Californians - will allow bad and shameful things to happen and claim indifference or that they did not know.

They do.

In reconciling our past with the reburial of 40 children and adults with disabilities, with mental health needs who were shamefully disposed of in unmarked graves means to remember and honor them and others who died and were cast out 50 to 100 years ago by remembering that we must not be invisible. It means that we must remember that we are all part of the same community and to remind others of that right.

It means that we need to also remind ourselves that decisions are made by those who show up. It means that we must teach ourselves that if we truly believe in inclusion and self determination then we must also believe we have the power and responsibility to create change, to protect our friends and families, and to remind the world - and perhaps most importantly ourselves, that a life matters .

Decisions are made by those who show up, who are not invisible, who by their very presence demand to be noticed, to be a part of what happens in their life in every possible way. It means to be respected and to bring down the comforting veil of indifference that divides and separates us from the rest of California and our nation.

If we do that, we will be honoring those who have died in those state hospitals in unmarked graves that an indifferent world wanted to forget and we will be respecting the lives they had lived by "showing up" and insisting that the world respect ours.

Royal Albert Hospital Archive

[Thanks to Iain Hutchison for this tip, via H-Disability.]

The cocoa that they gave us they say is mighty fine
It’s good for cuts and bruises and tastes like iodine
So I don’t want no more of Royal Albert life
Gee ma I want to go home

--A verse from the "Cocoa Song," related by former resident Stanley Byers, right, in an interview in the 1980s

Unlocking the Past is a fine online archive of images, interviews, texts, and video from the Royal Albert Asylum, Lancaster, England, an institution established in 1870, originally as a training school for disabled children, and later becoming a custodial institution for adults with cognitive disabilities. It was closed in 1996. The archives include patient memories like the song above, images of the Royal Albert scouting groups, video, audio, and transcripts of interviews with former patients and staff, architectural descriptions and images, a timeline, an article archive, and so on. It's an ongoing project, inviting contributions from anyone with material to share. Have a look or a listen.

RIP: Olivia Robello Breitha (1916-2006)

This is my patient identification number to this day. But I am not just a number now. I have finally regained the sense of dignity that was taken from me when I was a child. It's taken a long time for me to feel this way again. I'm glad I stuck it out.

--Olivia Robello Breitha, quoted in May 2003

Today's Los Angeles Times obituary pages bring news that Olivia Robello Breitha has died at the age of 90. Breitha wrote a book, Olivia: My Life of Exile in Kalaupapa (Arizona Memorial Museum Association 1988), about her longtime residence in Hawaii's famous colony for people with leprosy (Hansen's disease). I've got the book right here as I type this--it's really just a booklet, barely topping 100 pages, with lots of photos and a q&a appendix titled "Frequently Asked Questions About Leprosy" (a FAQ before FAQs?). But a fine booklet it is.

Breitha lived at Kalaupapa from the age of 18, when she was diagnosed and taken away to the colony, just two months before she was planning to marry (her intake image is shown above, left); until her death late last month, in a nursing care facility at Kalaupapa. Her memoir records all the minutiae of confinement; her three marriages; her surgeries; her travels after quarantine orders ended. Her advocacy work culminated last year in a Hawaiian state bill protecting the dignity of Kalaupapa's remaining residents (numbering about 30 now). (Here's the obituary from the Honolulu Advertiser, too.) There's a documentary called Olivia and Tim: Very Much Alive (1994), featuring Breitha's story combined with the story of a young man with AIDS, in which the two discuss living with a stigmatized diagnosis.

New books on Dixmont asylum, Deaf in Japan

There are two new books on disability history out just this month to note.

Karen Nakamura's Deaf in Japan: Signing and the Politics of Identity (Cornell University Press 2006), starts from the first Japanese schools for the deaf in the 1870s, and relies on both archival and ethnographic research to reveal recent shifts in attitudes, both toward and within the deaf community. Karen Nakamura is an anthropology professor at Yale.

Mark Berton's Dixmont State Hospital (Images of America, Arcadia Publishing, 2006) is a photographic record of the title institution, an asylum on the Ohio River outside Pittsburgh; built in 1859 (and named for Dorothea Dix), it closed in 1984 and the building was razed earlier this year. Berton is a Pittsburgh-based newspaper photographer who "spends his free time photographing asylum architecture."

[Dixmont was apparently a popular site for photographers; Rowdydow has a webpage featuring images from inside its ruins, and Dixmont.info has video and many more stills. The pictures of Dixmont at the Hours of Darkness gallery give you some flavor of the place's style and state before its demolition.]

July 28: Edith Lanchester (1871-1966)

Edith Lanchester (right) was born on this date in 1871, daughter of a prosperous English architect. When she was 24, living in Battersea, working as a secretary, she announced that she intended to live with her lover, Irish factory worker James Sullivan, without marrying him, as a feminist protest against marriage itself. In response, her father hired a "mental specialist" to interview Edith; he determined that she was threatening suicide--in the form of "social suicide"--and so he signed emergency commitment papers, under the Lunacy Act of 1890. Edith's own father and brothers bound her wrists and dragged her into a carriage that would deliver her to the Priory, an institution at Roehampton.

Edith Lanchester's socialist connections spread the word--within days, newspapers around the world carried news of the "Lanchester Kidnapping Case." The New York Times carried headlines like "Imprisonment in London Insane Asylum: Sullivan's Habeas Corpus Proceedings" (3 November 1895) and "Marriage --Without Ceremony: English Girl (Lanchester) Declared Insane" (also 3 November 1895). Four days after her commitment, Edith was released. The examining doctors this time declared her "misguided," but not insane. Upon her release, she and Sullivan resumed their intended domestic arrangements, raised their two children, and lived together until his death in 1945.

(If her name sounds familiar but her story doesn't, you may be thinking of her daughter: actress Elsa Lanchester, who played the Bride of Frankenstein and married Charles Laughton.)

The Suitcases

When the Willard Psychiatric Center near Albany NY was closed in 1995, 400 inmate suitcases were found in an attic, covered in dust. They contained the belongings of patients at the moment of their arrival (many expected short stays): letters, photographs, books, diaries, even handmade quilts, silk gloves, sheet music. I remember reading about the 2004 exhibit at the New York State Museum, and wishing I could see it. Now, there's a new online version, and a touring version too, so many more of us can explore these artifacts and learn more about the suitcases and their owners. Never has "Click to Enter" seemed so ominous a request.

The bricks-and-mortar version, and its online successor, share the structure of presenting a few of the suitcase owners' stories in detail, drawn from their own possessions and the hospital's records of their decades as inmates. As it's my research interest, I'm caught most by the women's stories:

• Theresa was German-born, a nun known as Sister Marie Ursuline. When her assigned mission in North Dakota failed, she was adrift. She returned to New York, and hoped her father could help her return to Germany, but in 1917 her letter was stopped under wartime restrictions. She was confused, but insisted "I don't hear voices, I don't see visions. I feel silly--I am not crazy--I am nervous." She stayed at Willard for 30 years.
  
• Ethel was a gifted needlecrafter, who raised her two children by working as a seamstress after she left her abusive husband. In 1930, a landlady complained of Ethel's refusal to be evicted, and Ethel was committed to Willard. She stayed for 43 years. In that time, her grown children visited her three times.
• Madeline (shown above, before and during hospitalization) was a Sorbonne graduate, who taught French at various girls' schools in the US. She was interested in the occult, which was enough to render her "unemployable" during the Depression, so in 1931 she too was committed to a psychiatric unit, and eventually arrived at Willard, furious: "I want out of here immediately. I think it is an outrage to be here." She stayed for 47 years.

One of the men stayed for 62 years, from 1919 to 1981--even hospital officials admitted in the 1960s that his admission was "a mistake." And these are only a few stories from hundreds found in the attic, from many thousands at Willard and other similar hospitals across the US. Go look in their eyes; look through their possessions (which no heir has come to claim); many had family, friends, jobs, cars, skills, college degrees. Nonetheless, it didn't take much for circumstances to place them all in a mental hospital for life. And only now are their stories being told.

[Thanks to Arlene Wilson for giving us the link to this online exhibit in comments.--PLR]

May 5: Happy Birthday, Elizabeth Cochrane!

Another disability history birthday for today. Elizabeth Cochrane, better known by the name she used in her bylines, "Nellie Bly," was born on this date in 1864, in western Pennsylvania. She was a journalist with a knack for publicity and a strong interest in reform. In one of her undercover investigations, she posed as a madwoman to gain entrance to Blackwell Island, New York City's lunatic asylum, to report on conditions there. The full text of the resulting book, Ten Days in a Mad-House, is available online here; her stories about inmate treatment at Blackwell prompted a state investigation of the facility, and ultimately reforms to its practices.