My New Blog at HNN: For Ebola, The Band Played On, and On, and On

x-post History News Network

At a recent meeting of the World Bank and International Monetary Fund, Centers for Disease Control (CDC) Director Tom Frieden likened the current Ebola outbreak to the early years of the AIDS epidemic.  “I’ve been working in public health for 30 years,” said Friedan. “The only thing like this has been AIDS. And we have to work now so that this is not the world’s next AIDS,” Frieden said.

Since I’m a historian of medicine, I have been thinking the same thing as I’ve watched the Ebola epidemic unfold over the past few months.  I first read about the Ebola virus in journalist Randy Shilts’s book And the Band Played On: Politics, People, and the AIDS Epidemic (1987).  Although the book was meant to raise awareness about the AIDS crisis, it begins in 1976 with a “virulent outbreak of a horrifying new disease” in a town along the Ebola river on the Zaire-Sudan border, which “had demonstrated the dangers of primitive medicine and new viruses.” The outbreak started when a trader from a nearby village came to the teaching hospital for nurses in Maridi with fevers and profuse, uncontrollable bleeding. Within days 40 percent of their student nurses were infected.

Alarmed local leaders called the World Health Organization, who sent doctors from American Centers for Disease Control. By the time the CDC workers arrived, thirty-nine nurses and two doctors had died from what was now called Ebola hemorrhagic fever.  CDC doctors quickly isolated those with fevers and the epidemic was quickly contained.  Still the toll was high:  53% of those who contracted the disease died from it.  “Years later,” Shilts wrote, “a tenuous relief would fill the voices of doctors who talked of how fortunate it was for humankind that this new killer had awakened in this most remote corner of the world and been stamped out so quickly.  A site just a bit closer to regional crossroads could have released a horrible plague.”

Ebola epidemics have occurred periodically in rural parts of West and Central Africa but until this year have been quickly contained.  In contrast, the current epidemic first emerged in a major urban area and spread rapidly before an effective containment strategy could be put in place. From there, it has spread to other heavily populated areas, and now, because of air travel, to the United States and Europe.  The fact that the virus has until now been confined to isolated rural areas explains, but does not excuse, why public health officials were caught off-guard.  As Shilts reminded us back in 1987, “With  modern roads and jet travel, no corner of the world was very remote anymore; never again could diseases linger undetected for centuries among a distant people without finding some route to fan out across the planet.”

Calls by Texas Governor Rick Perry and members of Congress to ban flights from countries in West Africa where the epidemic is raging, while understandable, also risk creating the kind of ignorance and xenophobia we saw during the early years of the AIDs epidemic.  In his book When Germs Travel: Six Major Epidemics that Have Invaded America and the Fears They Have Unleashed, Howard Markel observes that the discovery of AIDS among homosexuals, heroin users, Haitians, and Haitian immigrants living in New York and South Florida “helped to create a powerful association of sexuality, substance abuse, ‘bad blood,’ black skin, voodoo rituals, and prejudice.” Haitian refugees who were HIV positive were held at “Confinement Camps” in Guantanamo Bay.  Although these refugees were eventually allowed to settle in the United States, discrimination against Haitians continued. Haitians in the U.S. were the only immigrant group that the FDA prohibited from donating blood, even though the percentage of Haitians infected with HIV was much lower than residents of San Francisco, New York, Boston, or San Juan, Puerto Rico. After nationwide protests by the Haitian immigrant community and their supporters, “the FDA formally removed Haitians from its list of banned blood donors.”

We are already seeing this type of racism in the news coverage of the current Ebola epidemic.  For example, Andrea Tantaros of Fox warned that people who travel to the country and show symptoms of Ebola will “seek treatment from a witch doctor” instead of going to the hospital. Immigrants and visitors from Liberia, Guinea, and Sierra Leone are being shunned and asked to leave work out of fears they will spread disease, and Navarro College near Dallas is refusing to accept international students from countries with confirmed Ebola cases. Conservative radio hosts Rush Limbaugh and Michael Savage have even suggested that President Obama and other liberals deliberately want to spread Ebola in the United States as punishment for slavery. Randy Shilts died in 1994, but hopefully his message that prejudice is no way to fight a plague will live on.

Our Teens, Ourselves

via Our Bodies, Our Blog, where Melanie Holmes describes how her mother gave her older sister a copy of Our Bodies, Ourselves to her oldest sister, and then “instructed each sister to hand down the book to the next.”  When Holmes’ daughter turned 10, Holmes bought an updated copy of “Our Bodies, Ourselves” to read together “We covered the basics; I wanted her to know what her forthcoming menses would mean.”

Since I study the history of adolescent health, I know that one of the founders of the Boston Women’s Health Book Collective, Ruth Davidson Bell Alexander,  published a guide for teens called Changing Bodies, Changing Lives: A Book for Teens on Sex and Relationships.  The first edition was published in 1980. Although the title emphasizes teenage sexuality the book also describes “the many physical and emotional changes that occur during adolescence.”  The book has been updated several times, and the most recent edition was released in 2008. 

So, I’m wondering why mothers choose to give their daughters the adult version of Our Bodies, Ourselves instead of Changing Bodies, Changing Lives.  Are they unaware of the teen version?  Or do they find the information in OBOS better?

Craftivists v. Hobby Lobby

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Heather Munro Prescott:

Ooh, where can I get one of these patterns?

Originally posted on Nursing Clio:

Creative stamp arrangements. Cross-stitched fallopian tubes. Knitted uteri. This summer’s social media circulation gave witness to all manner of artsy protests surrounding reproductive rights. Practitioners of this sort often call themselves “craftivists,” a portmanteau that makes clear the use of craft for activist ends. (“Lactivism” indicates a similar word blend, regarding activists who mobilize around issues of lactation.) Guerrilla knitting, yarn bombing, yarn storming, and granny graffiti are all terms in the craftivist lingo (some lovely examples of which can be seen here). To get their message out, craftivists often work in public spaces – sometimes in a guerrilla, dead-of-night manner – and their colorful, even fanciful creations can provide a non-threatening point of entry for public discussion of serious issues. In July and August this year, craftivists made sneaky appearances at Hobby Lobby stores around the U.S. to leave art-based messages for the retail giant as well as for…

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One Year of ‘Forbidden Histories’

Heather Munro Prescott:

Happy Belated Anniversary!

Originally posted on Forbidden Histories:

It was precisely a year ago that I entered the world of history of science blogging by launching ‘Forbidden Histories’. (Incidentally, my first title choice – ‘Hidden Histories’– was already taken, and somewhat reluctantly I decided to go with the more melodramatic-sounding name.) One year later, I’m still not sufficiently blogosphere-savvy to understand what exactly statistics of page views and Facebook ‘likes’ tell me about the blog’s success. Regardless, a short résumé might be useful to provide visitors with a handy overview of what has been done so far, but also help me think about how I would like ‘Forbidden Histories’ to develop in the long run.

'Forbidden Histories' on Facebook
‘Forbidden Histories’ on Facebook

My first blog post sketched the hidden history of the ‘poltergeist’ and its naturalization, taking issue with the anachronistic definition of the term in the Oxford English Dictionary. Other texts were concerned with the tacit and circular…

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Can ‘middle child syndrome’ be applied to four nations history?

Heather Munro Prescott:

Intriguing post.

Originally posted on Four Nations History Network:

Can ‘middle child syndrome’ be applied to four nations history?

This week, Edinburgh PhD student Sophie Cooper ponders the complex interrelationships between nations and regions, and asks, just whose history are we teaching secondary school children? 

‘Middle child syndrome can lead to a sense of low self-esteem, feelings of insecurity and jealousy of others.’

 Many will not appreciate my use of this comparison, but I believe that it can be applied to the study of four nations history in schools. I studied “British” history for years within the English school system and in all that time, Scotland managed to get in for a lesson or few (James VI/I and all that), Ireland crowned a few pretenders to the throne, and Wales…well Wales hid Henry Tudor for a bit but that was about it. The biggest power struggle within the Four Nations for me, as a native of Yorkshire, was firstly with…

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The intersection of rights in Harris v. Quinn

via CT News Junkie, which reports that “Republican lawmakers and advocates for disabled people called upon the state Tuesday to halt plans to collect union fees from home health care workers” following the U.S. Supreme Court ruling in Harris v. Quinn. In that decision, the SCOTUS “found that home health care workers in Illinois paid through Medicaid can not be forced to pay fees to the union representing them.”

One of the advocates mentioned above is Manchester resident Cathy Ludlum, who has spinal muscular atrophy and employs personal care assistants.  Ludlow and other opponents of Connecticut’s health-care workers’ union “called upon the state to stop plans to begin collecting union dues and what is called ‘agency fees’ from workers who chose not to join the union but have nonetheless been represented by it in collective bargaining negotiations. ‘Were this not to happen yesterday, union dues and agency fees would start coming out of my employees’ paychecks,’” said Ludlum. “’What we are asking for, to answer your question, is [the application of union fees] be rescinded immediately so that they don’t take that hit starting in two weeks.’”

Other aspects of Ludlum’s advocacy have much in common with other disability rights activists:  she has written for the disability rights blog Not Dead Yet and been a vocal opponent of efforts to pass a “right to die” law in the state of Connecticut.  In a 2010 article in the Hartford Courant, Ludlum told reporters that she believed “misconceptions about people with severe disabilities can lead medical workers to give them less aggressive lifesaving options. Doctors might think they would not want to live if they were in the patient’s condition and assume the patient feels the same, she said. Or medical workers might see a disability as a fatal condition, even if it is not.” These observations made her “wary of an effort in Connecticut to let terminally ill patients end their lives through medication prescribed by doctors. . . The concept — giving people in pain control over their dying processes — may sound sympathetic, Ludlum said. But she and other advocates fear the reality will be more complex, and could leave people who have severe disabilities vulnerable. They worry about the law being misapplied — for example, if a person with a disability asks for help dying but is not terminally ill — and about the ideas such a policy would foster about the worthiness of a life lived with diminished capacity.”

On a website for disabled persons looking to hire home care workers, Ludlum has said, “The whole world opened up for me when I started hiring personal care assistants. Without their commitment and support, I could not have an active and independent life.” For Ludlum, “it became especially important that I hire personal care assistants who were reliable, and who would enjoy being part of my life. People who thought of it simply as a “job” usually moved on after a year or two. But those who really understood the importance of what they were doing often stayed five years or more. Some even became lifelong friends.”

Ludlum’s story is linked to that of her personal care assistant, Debbie Barisano, who says:

“For twenty-five years I worked in a high paying job as a computer programmer, but I was not happy. The job was very stressful and I was sick a lot. I had volunteered for two organizations working with people with disabilities, and I wanted to find a job in that area where I would be happy going to work every day. I decided to enroll at Manchester (CT) Community College in the Disability Specialist Program. One day Cathy, a woman with a severe physical disability, came to my class and spoke about her life. She mentioned that she needed a personal care assistant. I was interested, but at the same time I was scared. I had never done anything like that. I waited a month before calling Cathy, but I found out the first night that there was no reason to be nervous. She explained everything and I fell in love with the job. I have worked for Cathy since 1999, and I have loved going into work every day. In my first two years, I had only had two sick days, and I stopped needing some medications since I became a personal care assistant. I have had to make some sacrifices in order to work full time as a personal care assistant. I moved into a smaller place in affordable housing, and I do not have extra spending money any more. I also do not have any health benefits. But I would not trade my new profession for the extra money.”

Unfortunately, not all workers are able to make these kinds of sacrifices.  Both Ludlum and Barisano have opposed efforts to unionize home health care workers.  In 2012, Ludlum was the lead plaintiff in a lawsuit filed by the Yankee Institute for Public Policy, a conservative think-tank that “advocates for free market, limited government public policy solutions in Connecticut.” The lawsuit contended that Ludlow was “eligible for state subsidies that pay for her care through a Medicaid waiver,” and thus “she is an independent employer. She has the right to enter contracts with people who take care of her, and to negotiate benefits like vacation time and workers compensation, without any interference from a union. Similarly, just because PCAs receive a state subsidy for taking care of our most vulnerable neighbors like Cathy does not make them state employees. They are independent contractors and SEIU does not have a right to siphon off union dues from their pay.”

In other words, the Yankee Institute lawsuit contended that laws that created ways for home health care workers to join in collective bargaining trampled on the rights of disabled persons and the “right to work.”

Barisano also spoke against these laws.  In her testimony, Barisano called attention to the “unique relationship” between a personal care assistant and a person with a disability, likening this relationship that of a “family.” Barisano argued that the union “forcing itself” between the personal care assistant and the person with a disability would “ruin this relationship.”

This is very similar to the argument in Harris v. Quinn, except in this case it was an actual family member taking care of a person with a disability.  The lead plaintiff in that case, Pam Harris, said one reason she went to battle with the Illinois chapter of SEIU is that “I don’t want anyone to get between me and caring for my son.”

To those of us who study women’s history, these stories are very familiar.  Historically, nursing and personal care was done by female family members within the home.  Even after the profession of nursing left the physical confines of the home, and nurses started to form unions, the expectation that nursing was a “noble” profession that required exceptional levels of dedication and self-sacrifice persisted.  At the same time, the notion that these jobs were “women’s work” that were merely extensions of women’s traditional domestic responsibilities meant that they were historically undervalued and underpaid.

Eileen Boris and Jennifer Klein observe in an article in the Nation that these problems were especially true of domestic jobs held by immigrant women and women of color. They contend that the Harris decision “colludes in their misidentification as “just moms” and mischaracterizes the origins of home care work as an alternative to welfare for unemployed black domestic workers and other poor women. With a newly invented category of “partial public employee,” Alito denies women working in the home the same rights as other employees, returning unionized personal attendants to the status of household workers still excluded from the National Labor Relations Act. ” In addition,  “by dismissing the decades-long struggle of African American and immigrant women for recognition as workers, Harris reduces a state regulated labor market to individualized acts of love and obligation, furthering the agenda of well-funded anti-union forces.”

Not all home health workers share Barisano’s vision of sacrifice: rather, they welcome the ‘intrusion” of the union because it improves their wages and working conditions. Terrell Williams, one of the home health care workers who organized to become part of Connecticut’s SEIU District 1199, told CT News Junkie that “’I see being part of a union as a privilege. Home care workers put a lot of work in to form this union so we can have a voice and the issues that are important to us are heard. We are on the work sites every day, not elected officials, and we have the right to decide what is best for us and the people we care for.’”

In his column for the SCOTUS blog, Samuel Bagenstos points out that many disability rights activists supported the rights of their personal care assistants to collectively bargain:

Illinois’s system, like the systems in others states that have adopted consumer direction, gave the state the power to set workforce-wide terms and conditions of employment (like wages and benefits), while reserving day-to-day supervision and the choice of personal assistant to the individual beneficiaries with disabilities themselves. By allowing personal assistants to select a union to collectively bargain with the state on those workforce-wide terms and conditions, Illinois gave those workers the tools to negotiate higher wages and more ample benefits.  And this, in turn, helped to stabilize a personal-assistant workforce that had been marked by high turnover.  That is why many organizations of people with disabilities in Illinois and other states with similar collective-bargaining regimes signed on to a brief I filed in Harris in support of those regimes.”

In short, union rights, women’s rights, and the rights of persons with disabilities are intertwined. The Harris decision is not only a problem for organized labor and the rights of working women, it also threatens the independence of persons with disabilities.  It’s too bad Cathy Ludlow can’t see that.