Having come of age and been a nursing student during the early days of the HIV/AIDS pandemic, I have been feeling many moments of deja vu over the past month with the world-wide spread of the novel coronavirus and the accompanying COVID-19 illnesses. It is, of course, more than a distant global health issue now since I live, work, and teach nursing in Seattle-King County–site of the first death of a patient with COVID-19 and where experts now estimate at least 1,500 people are already infected. The two high-risk groups for severe complications and deaths from COVID-19 are healthcare providers and older people who have underlying chronic illnesses. I fall into one and a half of those categories, so I am concerned on a personal level.
But I am concerned on a larger level because I teach hundreds of nursing students and feel an urgent responsibility to help prepare and equip them to deal with this public health emergency. And not just the practical training and adequate access to the necessary medical supplies–on the use of personal protective equipment like face masks and goggles. But also the emotional and ethical preparation and support for processing a rapidly evolving, complicated pandemic. Acknowledgement that fear and anxiety are part of this but that we have a personal and professional duty to care for people despite that fear and without bias. I like the public health messaging that has gone out from our Public Health-Seattle & King County people: “Viruses Don’t Discriminate and Neither Should We.” Yet it goes beyond that, to an acknowledgement of weaknesses of our healthcare and public health system and resolve to do better, to learn from our mistakes–including from our mistakes in how we handled the HIV/AIDS pandemic. We cannot allow shallow, partisan politics, malicious misinformation, undermining of evidence-based public health interventions, and bigotry to fuel the spread of this virus.
Dorothea Dix was a leading US and international mental health reformer. She knew how to wield her quill pen and do her own reporting to advocate for positive changes. We still have a lot to learn from her.
Starting in 1830 with her investigative reporting on the deplorable conditions of inmates at a Cambridge, Massachusetts jail, Dorothea Dix quickly spread her mental health advocacy efforts with inspections of prisons and insane asylums throughout Massachusetts and other states, then internationally to England and Scotland (petitioning Queen Victoria for reforms), France, Italy (petitioning Pope Pius IX), and Turkey (trying unsuccessfully to meet with and petition Florence Nightingale at the end of the Crimean War).
After Dix’s controversial stint as Superintendent of Women Nurses for the Union Army during the American Civil War, she again took up her mental health reform efforts extending them to the Far West, visiting California, up through Oregon, to Washington Territory. Remarking on the natural beauty of Washington, including snow-capped Mt. Rainier, she described in a letter to her British Quaker reform friends, the Rathbones of Liverpool, that she was favorably impressed by the Pacific Northwest’s “humane and liberal” prisons and insane asylums. She attributed their excellence to how newly settled the area was, a newness that allowed for more progressive thinking than in either European or the American East Coast cities.
Dix was involved with political debates raging in England and Scotland where local parishes used the contract system, paying for their insane poor to live and work in private, for-profit insane asylums. Many of the asylum proprietors cut costs and increased their profits by shackling patients inside unheated rooms and depriving them of food and medical care. Known as the “trade in lunacy,” once the truths of the trade were uncovered, the practice was a source of widespread moral outrage and calls for reform.
In America, there were claims that treatment of insane incurable paupers in state-run insane asylums was a more humane approach. Proponents claimed it would save money in the long run, given economies of scale and since patients could avoid being sent to higher-cost jails and prisons. Early reports from institutions such as the Worcester Insane Asylum claimed high success rates of “curing” patients of their insanity, by citing high patient discharge rates. What they failed to mention were the equally high rates of readmission of these patients to the same or similar institutions within short periods of time. Once forced to face these statistics, proponents of insane asylums, including Dorothea Dix, began to point to “seasonable care,” meaning that successful treatment and cure rates occurred when patients were identified early in their illness and were provided with appropriate treatment at insane asylums. Early in their illness was typically defined as treatment within the first year of onset of their symptoms.
Public and private debates in America were raging as to whether paupers–insane or not–brought on their own plights through immoral acts such as intemperance, specifically in terms of alcohol consumption, and the duty of the state to care for such people. Calvinist work ethics and conceptions of sin and salvation colored these debates. Women with children “out of wedlock” and prostitutes were labeled as sinners and as undeserving poor. Leading reformers such as Dorothea Dix declared that the duty of society was the same whether insanity or destitution resulted from “a life of sin or pure misfortune.”
Dorothea Lynde Dix, Asylum, Prison, and Poorhouse: The Writings and Reform Work of Dorothea Dix in Illinois (Carbondale, Ill.: Southern Illinois University Press, 1999).
Thomas J. Brown, Dorothea Dix: New England Reformer, Harvard Historical Studies ; v. 127 (Cambridge, Mass.: Harvard University Press, 1998). Dix, Asylum, Prison, and Poorhouse.
Legislative Assembly of the Territory of Washington, “An Act Relating to the Support of the Poor.”
Tamonud Modak, Siddharth Sarkar, and Rajesh Sagar, “Dorothea Dix: A Proponent of Humane Treatment of Mentally Ill,” Journal of Mental Health and Human Behaviour 21, no. 1 (2016): 69, https://doi.org/10.4103/0971-8990.182088.
Dorothea Dix, “‘I Tell What I Have Seen’—The Reports of Asylum Reformer Dorothea Dix,” American Journal of Public Health 96, no. 4 (April 1, 2006): 622–24, https://doi.org/10.2105/AJPH.96.4.622.
Dorothea Lynde Dix, The Lady and the President: The Letters of Dorothea Dix & Millard Fillmore (Lexington: University Press of Kentucky, 1975).
“Changing the world may need to begin with a firm recognition that only the outward manifestation of our problems is new. We need respite from the present in order to return to it, and an active form of respite is seeing ourselves reflected in old stories. The good times have always been fleeting and poorly distributed. Looking back can be one form of moving on.” –Arthur W. Frank , astute and eloquent and timely… Sharing his recent blog post as it is powerful and important for all of us in these uncertain times.
So we all enter a new decade. I haven’t written recently, in part because of enjoying the holidays, and in part because I’ve been working hard to assimilate Simon Critchley and Jameson Webster’s The Hamlet Doctrine (now reissued as Stay Illusion). I finally read this book just as my article “‘Who’s There?’ A Vulnerable Reading of Hamlet” appears in Literature and Medicine (37.2, Fall 2019, 396-419, currently online). If I’d read Critchley and Jameson earlier (the book appeared just as I submitted the manuscript), I would have written a different article. Which may be what makes Hamlet perennial: more than maybe any story, it never stops opening into different understandings. C&J read Hamlet very differently from Harold Bloom, but they left me thinking that Bloom’s title gets the point of it: Poem Unlimited. But that’s an apology and update, not what I want to write about today.
The unique Little Free Libraries around Seattle, including the one pictured here, are wonderful community assets. In a Little Free Library near my home I found, read, and returned a gorgeous hand-made journal intentionally left there by an older woman who is homeless. She considers these journals to be her published memoirs. I thank her for sharing her artistic and writerly talents, as well as her astute insights into the “homelessness industrial complex” of Seattle. Reading her journal provided me with a window into her world.
I admire the work of Seattle architect Rex Holbein, his daughter Jenn LaFreniere, and other people at the Seattle non-profit Facing Homelessness who help match homeless people, including homeless mothers with small children, with homeowners who have built backyard accessory dwellings for them. Called the “Block Project,” it has the motto “Yes, in my backyard,” as opposed to the usual “not in my backyard” NIMBY-ism. It requires the buy-in of people in the neighborhood, or at least the city block, where a formerly homeless person will live. Their aim is to have a homeless person or family supported by an entire community, recognizing that homelessness is not just “houselessness” as many advocates now claim. Homelessness is about the lack of interpersonal affiliations, connections, and supports that make a house a home. Although this is not something I can see myself doing anytime soon, I like that the Block Project and Facing Homelessness exist in my city. It gives me hope that we can become better versions of ourselves, a better version of our city.
In this I am reminded of the words of Rev. Craig Rennebohm, who began a still-thriving street-based mental health outreach program for homeless people in Seattle. I had the pleasure of interviewing him for the oral history component of my Skid Road project in February 2016. He said, “I realized that if we can’t bring some level of peace to our neighbors on the streets, in our communities, there’s no hope for us being a more peaceable presence in the world. We need to learn how to be peaceable and healing at the most fundamental levels of our common life–as families, as neighbors, as cities and towns–communities.”
Here’s to a peaceable and healing and compassionate year ahead.
This, unfortunately, is the season for despair for far too many people in our country. We have the recent health policy and population health news that, for the third year in a row, life expectancy in the United States is going down. Our overall life expectancy began to stagnate in the 1980s, then decline for certain groups, and more recently to decline more broadly. (see: “‘There’s something terribly wrong’: Americans are dying young at alarming rates” by Joel Achenbach, The Washington Post, November 26, 2019)
And, as researchers point out, this decline cannot be blamed solely on the opioid epidemic. Neither can it be blamed on Democrats or Republicans. Diseases and deaths of despair in our country are something we are all responsible for, what we all can do something about.
History teaches us to take a long view. History training, in the words of one of my favorite contemporary British historians, David Hitchcock, is also “empathy training among other things.”
Recently, I have had the pleasure of immersing myself in the oral history interviews I have conducted with a variety of people working and living at the intersection of homelessness and health in Seattle-King County. You can view the names and photographs of the people I have interviewed so far for my Skid Road project, as well as a few videos, here.
As an antidote to despair, I offer you an excerpt from my interview with one of my mentors, the social worker and civic engagement teacher Nancy Amidei. This interview was conducted on June 16, 2015 at Jack Straw Cultural Center in Seattle. This was her response to my question of what gives her hope for the future:
“I’m old enough to be able to say that when I graduated from college, there was no Medicare, there was no Medicaid, there was no Head Start, there was no WIC [Women, Infants, and Children] program. Food stamps was a pilot demonstration project in seven counties. What else? Oh, school lunch was only in the schools that could afford it, only the rich schools. There was no senior nutrition program. There was no American with Disabilities Act. There was no Civil Rights Act. There was no Voting Rights Act. Oh, there were no women in professional sports because there was no Title IX.
So, if I had to guess, I think all of those things passed within maybe twenty years from when I graduated. Well, if you had lived through that kind of change and you’ve seen that happen–and most of that is stuff that helps people who are not rich, who are not powerful. Food stamp recipients are not rich and powerful. Welfare moms are not rich and powerful. We can do things in this country, and you don’t have to be rich and powerful to make it happen. But you do have to vote, and you do have to pay attention to who’s in office. You do have to pay attention to the candidates. And you do have to speak up.”
I have known and worked with way too many homeless veterans of various U.S. wars. But the one I remember best is a Vietnam veteran I call Jake. He became a patient of mine in the mid-1980s when I ran a clinic for the homeless in my hometown of Richmond, Virginia. I wrote about him in a chapter titled “Homeless Ghosts” from my 2016 medical memoir, Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net. Even though our system of care for homeless veterans has improved since the 1980s, homelessness, post-traumatic stress disorder (PTSD), and suicide remain prevalent at alarming rates for our veterans. Below, I include the VA suicide prevention hotline, followed by an excerpt of my story of Jake.
*Where to Call for Help: The Department of Veterans Affairs maintains a hotline for veterans in crisis that operates 24 hours a day. Call 1-800-273-8255 and press 1. Online, visit veteranscrisisline.net/chat, or send a text message to 838255.*
“Since I was seeing Jake regularly for wound care, over the next several months I got to know him better. He wasn’t talkative, but began offering more information, at least about his current life. There was something about the daily ritual of foot care and wound cleaning that nudged him to talk. I learned to modulate my questions with his moods, knowing when to gently probe and when to back off, when to be silent as he brooded. It was like falling into step beside him.
Jake told me about his pet crow named Blackie, how smart Blackie was, and what a good companion because she listened and didn’t talk back. “She had a hurt wing when I found her but she let me splint it. Healed up crooked but she’s real strong.” Insomnia and nightmares plagued him, so he stayed up most nights reading paperback novels by flashlight. Mysteries were his favorite as long as they didn’t involve much killing. He didn’t like sleeping outside because it reminded him of the war, so he stayed in his car, or in a vacant garage he’d found near the Hollywood cemetery on the edge of the river. He liked the quiet of the cemetery and was able to sleep better there. The ceiling of the garage had old glow-in-the-dark stars and he could see his way around at night by their light. Jake had been homeless off and on ever since he was discharged from the U.S. Army ten years ago: “I tried going home but it didn’t work out.” I didn’t press for details. His face closed down as he said it. Jake had a classic case of the recently named Post Traumatic Stress Disorder—PTSD. It had older names, including battle fatigue and shell shock. During the Civil War it had been called nostalgia or homesickness.
I knew about PTSD, but only in an abstract, clinical sense. At the time, I didn’t realize I would develop it myself. I wish I had known then what I know now about PTSD, how it festers and flares inside while leaving no visible scars. Maybe I could have done more to help Jake. Maybe I could have seen that his PTSD was more destructive than his leg wound.
What I would never know first hand was what it was like to be a chronically homeless war veteran. The media people liked to focus on this segment of the homeless population, the long-term disabled homeless, the large number of Vietnam vets who were on the streets. After the Vietnam War was finally over, people in the U.S. wanted to forget about it, but the presence of homeless vets on the streets wouldn’t allow them to.” pp. 89-91
Meghan Daum, in her NYT book review “New Memoirs Show How the Other Half Lives” (October 10, 2016), included a review of my book, Catching Homelessness, along with J.D. Vance’s Hillbilly Elegy: A Memoir of a Family and Culture in Crisis and a much earlier memoir by a Southerner, Wilma Dykman’s Family of Earth: A Southern Mountain Childhood. In her review of my book, Daum assumes that I lost or gave up custody of my son and that I must be under a “gag order” because I do not write more about my son or my first marriage. Neither of these are true.
The truth is I maintained joint custody of my son, maintained a good relationship with my ex-husband, and I raised my son full time from the time he was ten—once I had a stable job and home for him here in Seattle. He now is finishing his PhD at the University of Washington, is happily married, and is an amazing father to my first grandchild. They are all very much a part of my current life. So yes—an uplifting story (in the end) and also a complex story. My life is not a neat and tidy Hallmark Moment sort of life. It is messy and complicated and I wouldn’t have it any other way.
This all came back to me this past week through a podcast interview with Janet Perry for Nonfiction4Life.
“I want people to think of me as being this thirteen-year-old little girl that raised myself on the streets and survived through a lot of stuff like the Green River Killer, and other people that were crazy and through me shootin’ dope and never died. Cleaning up my life and having my kids and doing the best I can do.” Erin Blackwell, street name “Tiny” in a 2014 interview with the late master photographer Mary Ellen Mark (1940-2015)
I am revisiting the story of Erin Blackwell, a Seattle woman who, as a then thirteen-year-old prostituted teen in downtown Seattle, was the focus of an influential documentary and accompanying book on the “street kid” phenomenon of the 1980’s: Streetwise(1984) by Martin Bell (documentary) and Mary Ellen Mark (book). I also am revisiting and extending my thinking about the complex ethics involved in storytelling, whether that is through photography, film, or—in my case—writing.
Specifically, I am wrestling with the ethical issues involved in my research and writing of my current Skid Roadbook project’s chapter, tentatively titled “Streetwise” (now retitled “Threshold”) and based on the story of Tiny. Since my book project is a narrative history of homelessness and health in Seattle, all of my previous chapters have focused on the story of a ‘real life’ Seattleite who lived and/or worked at the intersection of health and homelessness. But all my my main characters up until “Streetwise” are now dead. The fact that they are dead obviously does not let me off the hook from being respectful of who they were as people—respectful of their memories and their legacies, including living relatives.
But Tiny—Erin Blackwell, who is very much alive and still living in the Seattle area. How do I go about ‘using’ her story as the basis of exploring the complexities of the homelessness crisis—particularly the youth homelessness crisis— in our nation and in Seattle in the 1980’s and 1990’s?
Since I moved to and began my work with Seattle homeless youth in 1994, I have come to know a fair number of the homeless youth depicted in Streetwise. I’ve also worked with social workers and other care providers who were involved in one way or another with Streetwise. Thus, I am privy to insider information, much of which is not in the public domain. That, I know, will not make its way directly into my book but it will end up in it at least indirectly. I have completed ‘official’ oral history interviews with the health and social care providers. I’m still wondering whether or not I want to try to interview Erin for this chapter. Somehow it does not feel right to ask her to expose herself more than she already has.
More information on Streetwise and “Streetwise Revisited: A 30-year Journey” exhibition in fall 2016 at the Seattle Public Library can be found at Seattle University’s excellent Project on Family Homelessness website.
The future of nursing should begin with people and community/population health. And to do that we need to disrupt our tired, outdated approach to nurse education. Not by tweaking here and there. Not by investing tons of money in yet more high tech simulation labs and “dummies.” Not by asking ourselves and our students, “What would Florence do?” (as in the Florence Nightingale, important as she is). Rather, we should begin by asking, “What would Dorothea do?” (as in Dorothea Dix, US and international mental health reformer) and “What would Lillian do? (as in Lillian Wald, the “mother of public health nursing” and founder of the Henry Street Settlement House in New York City).
“Begin with people, not body parts,” is what one of our nursing students told us recently when she heard that we are disrupting our pre-licensure nursing program at the University of Washington. Starting this coming academic year (begins in September), we will begin with people—with community, public health nursing instead of the longstanding “traditional” acute care medical-surgical nursing. I am excited to be teaching this “new” community/public health nursing course. It will begin at the true beginning with the social determinants of health equity. Not just with the social determinants of health (SDH)—those factors that affect our health from where we live, work and play. The social determinants of health equity extends past the SDH to acknowledge and address the inequities inherent in our society that affect health, including structural racism, and all the other “isms” of longstanding discrimination against women, persons of color, LGBTQ people, disabled folks, and the aged. Dr. Camara Jones and her “Cliff of Good Health” is the best illustration of this.
The Future of Medicine 2030 Seattle Town Hall was held at the University of Washington this morning. This builds on and extends the work of the Institute of Medicine’s Future of Nursing report back in 2010. The theme of today’s town hall meeting was “High Tech, High Touch.” I was dismayed (okay, I was irritated) that the lead speaker at today’s event was a physician, Molly Coye, who is an executive-in residence with AVIA, a network of US health systems “solving problems with digital technologies.” It is the “The Future of Nursing” after all and not “The Future of Our Insanely Expensive and Ineffective US Healthcare System.” And it should be led by nurses!
The one truly inspirational speaker at today’s event was a nurse—Dean Kenya Beard from Nassau Community College in New York. She spoke of some of the drawbacks of health technology and how they can amplify health inequities and how most of the proprietary algorithms for high tech “solutions” lack transparency. She called out the pressing need for nurse educators to “rise above any level of discomfort” and address structural racism and interventions that work. As to structural racism in our country she stated, “humans created it and only humans can destroy it.” She ended her talk with, “We need daring ingenuity.”
My question/comment which I posted online during the town hall was this:
“Why aren’t we using the much more useful term “social determinants of health equity” versus the rather status quo term “social determinants of health”? Why aren’t we killing forever the outdated and unhelpful message to our nursing students that they “have to have at least two years of inpatient med-surg” work before they go on (yes, go on) to community, public/population health nursing? Why aren’t we stopping the practice of educating nursing students to be “agents of social control” and instead to be “agents of social change?” Also, thanks for the refreshingly honest and necessary presentation and perspective from Kenya—Brava!
An important news update brought to you by President Trump: Homelessness started two years ago in our country and it is the fault of liberal states, of liberal people in sanctuary cities such as Los Angeles, San Fransisco, and New York. And Seattle. Oh yes, and our president claims that it is the fault of homeless people themselves. “They like living that way.”
“We’ve never had this in our lives,” he said in a FOX news interview with Tucker Carlson last week. When asked by Carlson what we should do about it Trump responded, “Take the (homeless) people and do something.” Presumably by that, he means clear homeless people away, dispose of them out of sight. Perhaps in detention centers along the US-Mexican border. Or behind rows of doors from torn-down affordable urban housing as in the photograph above from my hometown of Richmond, Virginia. I took that photograph in 1986 on my way to my work as a nurse with homeless people.
Trump pointed to his clearing out of homeless people in Washington, DC when he moved into the White House. He claims he told people that he had leaders of the world coming to see him, the President of the United States, and “they can’t be looking at that” referring to visible poverty and homelessness in our nation’s capital.
That this revisionist history, these lies, would be laughably absurd in a different context, a different time—perhaps sometime in our hopefully brighter future—is one thing. But that wistful and wishful thinking only highlights the current dangers in this rhetoric. People believe what Trump and Carlson say. People act on what Trump and Carlson say. “Take the (homeless) people and do something” leads to vigilantism and physical attacks (and killings) against people who are or who “look homeless.”