Preliminary thoughts on #CassandraC case in Connecticut

cassandra-cvia the Hartford CourantThis afternoon the Connecticut Supreme Court ruled that the 17-year old woman identified in court documents as Cassandra C. “is not legally mature enough to decide against life-saving chemotherapy” for Hodgkins lymphoma.

Despite a poor prognosis without chemotherapy, Cassandra refused treatment from the beginning and after she missed several medical appointments last fall her doctors reported her case to the state’s Department of Children and Families (DCF), accusing her mother, Jackie Fortin of Windsor Locks, with medical neglect. The DCF removed Cassandra from her home and placed her in state custody.  Cassandra ran away in November after receiving two treatments .  After she returned a week later, she was placed in Connecticut Children’s Medical Center where she continued to receive medical treatment. Meanwhile, Cassandra’s mother and lawyers  filed an appeal with the state’s highest court. The court documents contend  that the right to bodily integrity, “which is so fundamentally a part of the human experience that its recognition and protection stretch back long before any written constitution” applies to minors as well as adults.  Cassandra’s lawyers draw on the legal concept of a  “mature minor” which allows minors to give consent to medical procedures if they can show that they are mature enough to make a decision on their own.

Since I’ve written a book on the history of adolescent medicine, I’ve been following this case since last September. My university relations office has given my name to the local press, who may or may not be contacting me for an interview.  Meanwhile, I’ll post my preliminary thoughts.  The mature minor concept was the cornerstone of U.S. Supreme Court decisions involving a minor’s right to consent to health care, including receiving birth control and abortion, without parental approval or knowledge.  (see Baird v. Eisenstadt and Bellotti v. Baird).

As much as I disagree with Cassandra’s decision to refuse treatment, I think the mature minor concept is applicable to this case. Now I’m waiting for the phone to ring. . .

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.

 

Signal Boost: Speakout against age restrictions on over-the-counter #emergencycontraception #fem2

MAP flyer final-2via National Women’s Liberation.  The New York chapter of NWL will hold a speakout on January 22, 2013, in front of the Health and Human Services office at 26 Federal Plaza, New York, NY, to demand unrestricted access to the Morning-After Pill.  According to their press release, “we are holding our speakout on the anniversary of Roe v Wade because we believe that all women and girls should have access to all tools that enable us to control our reproductive lives.”

Members of this group have been fighting against age restrictions on over-the-counter emergency contraception since January 2004, when they “led the Morning-After Pill Conspiracy Coalition to show the injustice of the restriction on the MAP and to show that woman are the real experts when it comes to birth control.  On February 15, 2004, we began a civil disobedience campaign where 4,500 women signed a pledge promising to give a friend the MAP in defiance of the FDA’s prescription only requirement.  In January 2005, nine if us were arrest’s at the FDA’s headquarters as part of a larger protest of the FDA’s inaction.”

It’s nice to see the return of this group of activists. As I describe in my book.  the Morning-After Pill Conspiracy was inspired by the grassroots activism of the women’s liberation movement of the 1960s and 1970s: In an interview, one of the group’s founders, Annie Tummino said,  “We speak out and engage in civil disobedience. Our goal is to send the message that women are the experts on our bodies and lives.” MAPC used a variety of direct-action techniques to protest the FDA and the Bush Administration’s stance on emergency contraception. They held consciousness-raising sessions; speak outs in major cities; and committed various acts of civil disobedience including passing along emergency contraceptive kits to women without a prescription.

march4-04fMost emblematic of their ties to Second Wave feminist organizing were their actions at the March for Women’s Lives Washington, DC on April 25, 2004. The group held a mini-rally where a dozen women “testified about rushing around trying to get the Morning-After Pill after a condom broke during sex, about the prohibitive costs associated with a doctor’s visit, and about the tragicomic idea that anyone can get a doctor’s appointment in twenty-four hours, especially starting on a Friday or Saturday night.” In defiance of “unjust” prescription laws, the group flung boxes of Plan B® into the crowd. They also invited spectators “to join them in signing the Morning After Pill Conspiracy pledge to defy the prescription requirement (and break the law) by giving a friend the Morning-After Pill whenever she needs it.”

A group of physicians from the Association of Reproductive Health Professionals’ Reproductive Health Access Project contributed to this display of feminist direct action by bringing their prescription pads and freely writing prescriptions for emergency contraception for any woman who wanted one. According to MAPC member Jenny Brown, these doctors “were illustrating a point which was repeated over and over in the FDA’s advisory hearings–no physical evaluation or instruction from medical professionals is needed to safely and effectively use this medication.” Members of MAPC declared they “were proud to follow in the footsteps of feminists like Margaret Sanger, who passed out information on birth control when it was illegal to do so, and suffragists who were arrested for voting, to showcase how unjust the laws were.” Like the feminist activists who protested against the abuse of women subjects during the 1970s, MAPC members held a sit-in at FDA headquarters in January of 2005, where nine of their members were arrested for blocking access to the FDA, “just like they were blocking women’s access to birth control.”

Members of the MAPC members then filed a lawsuit, Tummino, et al. v. Hamburg with the Center for Reproductive Rights, the Association of Reproductive Health Professionals, and National Latina Institute for Reproductive Health.  From the lawsuit and feminist organizing, the FDA agreed to approve Plan B for women 18 and older without a prescription, in August 2006.  In March 2009- the FDA was ordered to make Plan B available to 17 year olds and to review its decision to deny a “Citizen’s Petition” filed by 60+ women’s health and rights organizations.  In February 2012, the MAPC took the FDA back to court based on its continued failure to act on removing scientifically unsupported restrictions on the MAP.

To support these efforts of NWL, you can attend the rally, sign their petition demanding the FDA and HHS to stop carding for emergency contraception, “like” them on Facebook, and forward their press release to other activists.

Day of Action on Emergency Contraception #ECOTC

Last year, I wrote of my disappointment that HHS Secretary Kathleen Sibelius overruled the FDA’s decision to make emergency contraception available over-the-counter with no age restrictions.

The Reproductive Health Technologies Project has started a campaign to convince Secretary Sibelius to reconsider her decision.  Their goal is to deliver a petition with at least 50,000 signatures to Secretary Sibelius on December 7th.  The petition reads:

“Women’s health, including the ability to determine the timing and spacing of pregnancies, should not be subject to politics. After more than a decade of medical research, the Food and Drug Administration (FDA) determined emergency contraception (EC) is effective and safe enough for access without restriction. Doctors recognize EC as an important component of reproductive health care, allowing women a second chance to prevent pregnancy when a primary contraceptive method fails. In December 2011, Health and Human Services (HHS) Secretary Kathleen Sebelius overruled the FDA and restricted access to EC. We urge Secretary Sebelius to revisit the evidence and remove the restrictions, placing women’s reproductive health above politics.”

If you agree, sign the petition.

Connecticut Senate Race and Emergency Contraception

via Talking Points Mem0

As many of you have heard, Republican Senate candidate Linda McMahon has tried to fudge her pro-choice position by stating that Catholic hospitals should not have to give out emergency contraception as mandated by a state law passed in 2007.   (In a related  Akin-esque moment, she also introduced the bizarre term “emergency rape“).
So, in this sense, she’s no different than the Senator she aims to replace, Joe Lieberman, who when the emergency contraception bill was being discussed in 2006, said that rape victims could just “talk a short ride” to another hospital.

Prochoice groups in the state are getting out the word that Linda is no friend of reproductive rights.  “Pro-choice candidates don’t compromise the health and safety of rape victims especially when receiving time sensitive medication,” said Christian Miron, executive director of NARAL Pro-Choice Connecticut. “There is no shortage of evidence proving that Linda McMahon is neither pro-choice nor independent,” said Murphy campaign spokesman Ben Marter. “McMahon’s extreme policy for rape victims and her support for the Blunt Amendment makes it clear that she would vote in lockstep with Washington Republicans that want to erase decades of progress for women.”

I’m hoping that this will earn a win for Chris Murphy.  (oh if you out-of-staters would like to help, please give to his campaign).

Enough with the #mancession already

via the New York Times Magazine, cover story by Hanna Rosin, “Who Wears the Pants in This Economy?

Earlier this year, Bryce Covert at Next New Deal declared the end of the so-called “mancession” — i.e. the gap between male and female unemployment.  First a definition:

“he term itself was coined by AEI scholar Mark Perry. He was the first to give a name to a striking phenomenon during the recession (officially from 2007-2009): not only did employment tank in male-heavy industries, and not only did they therefore have elevated unemployment rates, but the gap between their unemployment rate and women’s was the largest in post-War record-keeping. This was particularly striking because before the recession — in the months from 2004 to 2007 — unemployment rates were about equal for the two sexes, and women’s even rose higher than men’s for some months. This gap between the two rates hit a peak in August of 2009 at 2.7 percent — men at that point had an 11 percent jobless rate, and women had 8.3. (The gap started closing after that point even as male unemployment rose — women just started catching up with them in the unemployment department.) To sum up, as Perry puts it, “the impact of job losses was considerably greater for men, since almost 6 million men lost their jobs, compared to only 2.64 million job losses for women. More than two out of every three jobs lost in 2008 and 2009 were held by men (68.5%), or alternatively it was also the case that 217 men lost their jobs for every 100 women who became unemployed in 2008 and 2009.”

He points out that much of this was related to the industries most affected by the recession. Construction and manufacturing went into freefall. He calculates that the largest job losses during the recession were in manufacturing — down by 14 percent — and construction — down by 20.2 percent. Men make up 71.2 and 87.5 percent of those industries, respectively. On the other hand, some industries where women dominate were doing well. Education and health services was up 4 percent, 74 percent female, and government jobs were up 2.25 percent, 57 percent female.”

In March of this year, an analysis by the National Women’s Law Center showed “men and women are now on par for unemployment rates, both standing at 7.7 percent. Mark it: the gender gap that had Perry, the media, and manhood so worried has completely evaporated.

On top of that, the supposedly recession proof, female-dominated industries are not faring as well. And the male dominated ones are starting to show signs of life. Construction is up 2.1 percent; manufacturing is up 2. Yet government jobs are down 1.2 percent, and that’s across the board — 1.5 percent at the federal level, 1.4 at state level, and 1.1 at the local level. Those government job losses are driving our current womancession. Job losses, which skewed male, have now turned into skewed job gains. Men had lost 6 million jobs to women’s 2.64 million during the recession, but now women have gained just eight percent of the 1.9 million jobs added in the recovery.

This painful economic period, even if it’s showing signs of improvement, is likely far from over. Men and women are both still hurting in huge numbers. But at least one thing has changed: we can stop calling this a mancession.”
Yet, one would never know this from the Times magazine article, which examines the town of Madison, Alabama, where male-dominated manufacturing jobs have all but disappeared, and historically “female” jobs in health, education, and social services have expanded.

The result:  “a nascent middle-class matriarchy,” in which women “pay the mortgage and the cable bills while the men try to find their place.”

I’m about to teach my first session of a course on the New Deal, so I’ve heard this tale of men “emasculated” by hard economic times. At that time, Norman Cousins had the immodest proposal that the way the end the Depression was to fire all the women, “who shouldn’t be working anyway,” and hire men in their place.  Some places of employment actually followed that advice: for example, the majority of public schools refused to hire married women as teachers, and many had a policy of firing women who married.  Yet, at that time, men were even more reluctant and/or unprepared to take on “women’s work” — which was even more poorly compensated than it is today.

One would think that times have changed enough that men in the 21st would be secure enough in their masculinity to seek work in the expanding “female” fields. According one man who was interviewed, one reason they don’t is because these jobs pay far less than they were accustomed to earning.  A more important reason, though, was  “We’re in the South . . .A man needs a strong, macho job. He’s not going to be a schoolteacher or a legal secretary or some beauty-shop queen. He’s got to be a man.”

Since the article only covered white, married, heterosexual couples I’m wondering how representative this is of the South, let alone the rest of the country.  Perhaps Rosin’s forthcoming book will look at a more diverse sample of the American people. Meanwhile, read Covert’s excellent response to Rosin’s other articles.