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. . .

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.

The line between free range and foolish

How many of you out there have seen this nostalgic ode to a childhood “before the lawyers and the government regulated so much of our lives for our own good” that has been circulating on the Internet for years:

“No matter what our kids and the new generation think about us, WE ARE AWESOME !!! OUR LIFE IS LIVING PROOF !!!
To Those of Us Born 1925 – 1970 :

~~~~~~~~~
TO ALL THE KIDS WHO SURVIVED THE
1930s, ’40s, ’50s, ’60s and ’70s!!

First, we survived being born to mothers who may have smoked and/or drank while they were pregnant

They took aspirin, ate blue cheese dressing, tuna from a can, and didn’t get tested for diabetes.

Then, after that trauma, we were put to sleep on our tummies
in baby cribs covered with bright colored lead-based paints.

We had no childproof lids on medicine bottles, locks on doors or cabinets, and, when we rode our bikes, we had baseball caps, not helmets, on our heads.
As infants and children, we would ride in cars with no car seats, no booster seats, no seat belts, no air bags, bald tires and sometimes no brakes.

Riding in the back of a pick- up truck on a warm day was always a special treat.
We drank water from the garden hose and not from a bottle.

We shared one soft drink with four friends, from one bottle, and no one actually died from this.

We ate cupcakes, white bread, real butter, and bacon. We drank Kool-Aid made with real white sugar. And we weren’t overweight..
WHY?

Because we were always outside playing…that’s why!

We would leave home in the morning and play all day, as long as we were back when the streetlights came on.
No one was able to reach us all day.
–And, we were OKAY.

We would spend hours building
our go-carts out of scraps and then ride them down the hill, only to find out we forgot the brakes… After running into the bushes a few times, we learned to solve the problem.

We did not have Play Stations, Nintendos and X boxes. There were no video games, no 150 channels on cable, no video movies or DVDs, no surround-sound or CDs, no cell phones, no personal computers, no Internet and no chat rooms…

WE HAD FRIENDS
and we went outside and found them!

We fell out of trees, got cut, broke bones and teeth, and there were no lawsuits from those accidents.
We would get spankings with wooden spoons, switches, ping-pong paddles, or just a bare hand, and no one would call child services to report abuse.
We ate worms, and mud pies made from dirt, and the worms did not live in us forever.
We were given BB guns for our 10th birthdays, made up games with sticks and tennis balls, and
-although we were told it would happen- we did not put out very many eyes.

We rode bikes or walked to a friend’s house and knocked on the door or rang the bell, or just walked in and talked to them.
Little League had tryouts and not everyone made the team.
Those who didn’t had to learn to deal with disappointment. Imagine that!!
The idea of a parent bailing us out if we broke the law was unheard of. They actually sided with the law!

These generations have produced some of the best risk-takers, problem solvers, and inventors ever.
The past 50 to 85 years have seen an explosion of innovation and new ideas..
We had freedom, failure, success and responsibility, and we learned how to deal with it all.

If YOU are one of those born between 1925-1970, CONGRATULATIONS!
You might want to share this with others who have had the luck to grow up as kids before the lawyers and the government regulated so much of our lives for our own good.
While you are at it, forward it to your kids, so they will know how brave and lucky their parents were.
Kind of makes you want to run through the house with scissors, doesn’t it ? ”
~~~~~~~

Well, actually, no it doesn’t.  It isn’t that I don’t think I and the rest of my generation are awesome — we are!  I played outside all the time as a child, and continue to do so as much as possible as an adult.

Yet, like many tributes to the “good old days,” this message has a very selective view of the past.  It also reminds me a bit of Dana Carvey’s Grumpy Old Man character from Saturday Night Live.

Let’s look at smoking  during pregnancy.  Prior to the 1960s, mothers didn’t know that this increased the risk of premature birth, low birthrate, and fetal and infant death (not to mention increasing maternal morbidity and mortality). Lots of people like myself survived (despite being born eight weeks early in my case), but others didn’t, or were permanently disabled.
Today, we know better.

The same can be said of other “intrusions” listed above.  Maternal and infant mortality has been reduced because of screening for gestational diabetes and high blood pressure. Children no longer suffer serious brain damage from ingesting lead paint chips.  Seat belts, bike helmets, and car seats have saved countless children from death and disability.

I think there’s a lot of good ideas at the blog Free Range Kids.  However, let’s not forget that some “intrusions” are here for a reason.

Toddlers have bad teeth so let’s blame Mom

via Tenured Radical,who riffs on an article from today’s New York Times reporting on a “Rise in Preschool Cavities

TR writes:

“Just when you thought that middle-class parents had reached the limits of ignorance, the New York Times reports today that children under the age of five are showing up at the dentist’s office with a dozen or so cavities.  Some need the kind of extensive repair that is usually characteristic of people my age. One little darling featured in the story had 22 cavities, and was due for a root canal — at the age of two and a half years.  Go read it here.

My first thought was, well, these are probably parents working 3-5 jobs between them: things like toothbrushing just fall through the cracks as Mom and Dad pass each other in the hall like ghosts between day shift, night shift and swing shift.  But apparently not. The kid with the root canal?  Mom is described as a homemaker and Dad is in IT. Homemaker is not an easy career, I’ll grant you, which is a reason I checked the “historian” box after college instead of “baby machine.” But isn’t part of the job description of the stay-at-home-Mom “Take care of the kids?”

Commentators at TR’s blog have rightly called her (and the NYT article) out for putting all the blame on mothers.  I’m going to put in my two cents as a historian of child and adolescent health. Over a decade ago I participated in a Surgeon General’s Conference on Children and Oral Health, so this problem was not news to me. My paper was entitled “From Oral Health to Perfect Smiles: Advertising and Children’s Oral Health.”  You can read the whole thing at the conference website, but here are the main points:

During the Progressive Era (1890-1920), toothpaste advertisements reinforced the dental profession’s claim that good oral hygiene was essential to good overall health. Poor dental hygiene was seen as the root of other diseases, and cultivation of health teeth was an integral part of this period’s larger public health agenda.  You can see this in advertisements for toothpaste.  many physicians and dentists at this time believed that “without good teeth, perfect health is not possible.” Not only did poor teeth spoil one’s appearance, bad oral hygiene caused serious health ailments both in children and later in life. Public schools were the most common vehicle for teaching children good health habits. Teachers gave lessons on personal hygiene in the classroom, and distributed health “report cards” to children, who could earn points for brushing their teeth, and other good health habits such as hand-washing before meals, drinking milk, and getting plenty of sleep.

During the 1920s and 1930s, the link between oral health and the health of the rest of the body gradually disappeared from public health messages disseminated to lay audiences through advertising, and was replaced by a growing emphasis on creating “perfect smiles.” This focus on the appearance of the teeth rather than oral hygiene was fed by two trends: the growing popularity of motion pictures, and psychological theories about the link between physical appearance and self-esteem. Movie stars embodied high standards of physical attractiveness, and endorsed specific personal hygiene products that promised to impart beauty and glamour to the masses. The psychologist Alfred Adler popularized the idea of the inferiority complex, the notion that those who did not appear “normal” suffered from intense feelings of inferiority and low self-esteem. Advertisements for personal hygiene products capitalized on this concept, and warned consumers that even the most minor physical imperfection could interfere with a person’s success in life. The link between physical appearance and success became even stronger during the 1930s, as jobs became scarce, and employers preferred to hire workers who were young, healthy and fit.

During the 1940s and 1950s, this emphasis on perfect smiles continued. At the same time, advances in dental science reduced the incidence of dental hygiene problems. Before World War II, the exact cause of dental caries was not known, and it was common for even well- off Americans to lose many of their teeth by middle-age. By the late 1940s, scientists had identified the bacteria that caused tooth decay and gum disease, and demonstrated that regular dental visits and fluoridation of public water supplies could dramatically reduce the incidence of cavities and other dental hygiene problems. The reduction in oral disease led to an even greater emphasis on the appearance of the teeth and mouth.

Dental health professionals did continue to promote messages of good dental hygiene, but it was advertisers’ association of “perfect smiles” with personal success that made the most impression on lay audiences. Indeed, even dentists found themselves emphasizing how healthy teeth contributed to self-esteem and physical attractiveness. This strategy was double-edged: on the one hand, it helped sell regular dental check-ups and good oral hygiene to a middle-class public obsessed with physical appearance and its link with popularity and professional success. On the other hand, the emphasis on self-esteem and appearance made regular dental care appear to be a “luxury,” that did not need to be covered by private or public health insurance, nor did it need to be a priority for those concerned with bettering the public health. This has had made it difficult to justify federal programs that would give access to dental care to all Americans regardless of the ability to pay. Those who wish to improve the face of the child need to take a lesson from the past, and promote the idea that oral health is not just a route to a perfect smile, but to perfect health as well.

 

More Viral Politics: Teaching Students with Autism is Not Much Different than Teaching the Neurotypical

via Tenured Radical, who kvetches about the problems of teaching students with autism. I was shocked to see that someone as intelligent as TR repeated erroneous claims about autism and vaccines (see the CDC website for accurate information).  What was even more disturbing, though, was her rather dismissive attitude towards students with autism.  From the main article:

“What seems not debatable is that our sense of fairness, and the Americans with Disabilities Act (ADA) is way ahead of any conversation about what it will mean for young people who need a great deal of support to realize their human potential to attend college.  It seems certain is that increasing numbers of children on the autism spectrum — many of whom have unusual abilities — will go to college. As USA Today reported three years ago, they are already in our classrooms.  This is happening in a context in which there is little to no attention being paid to giving full-time faculty the training to teach students who have a wide range of capacities when it comes to what counts for normal classroom discipline:  sitting still for an hour and taking notes, being in crowded rooms where they risk being bumped and touched, overcoming obsessive behavior to get to class or hand in a paper on time, working in small groups with other students, or being in large classes with crowds of strangers.  It is also happening in a context in which being full-time faculty is becoming anomalous, and the financial “flexibility” of running higher education on per-course labor makes it unlikely that the vast majority of faculty will be eligible, or open to making unpaid time available, for the training that would make their classrooms accessible to autistic students. The challenges are somewhat different from the vast category of “learning disabilities” for which responsible colleges and universities provide learning centers to provide the support that makes what we euphemistically call “accommodation” useful.”

First, I’ll say that I’ve had several students with Asperger’s (aka Aspies) in my classes.  In general, they have been among the best students I’ve had.  In my experience the “obsessiveness” means that Aspies are more diligent about understanding assignments and meeting deadlines.  Yes some like to hog the conversation, but so do quite a few neurotypical students.  I’ve had plenty of neurotypicals fail to pay attention, sit still, or hand work in on time.

In the comments section, Elizabeth Switaj wrote:

“Yes, training and having the time to implement training is important, but if faculty are going to learn to support autistic students, a good first step would be to listen to autistic undergraduates themselves and to put the needs they express first instead of responding primarily to the perspective of the neurotypical parents of autistic children. The perspective of autistic undergraduates, which seems to me to be the most important on the subject, is entirely missing from this post.

One of the fundamental tenets of the disability rights movement is “nothing about us without us”–and this is no less important when it comes to autistic people (and I’m sorry but a single secondhand statement from an unnamed teenager really isn’t sufficient).”

I couldn’t say this better myself.  Unfortunately, TR didn’t get it. She said, ” And back to the “nothing without us” principle of political organizing: it’s incredibly attractive, ethical and powerful. But although bringing disabled people together as an identity group is important in terms of theory and social movement, there should be concern about the similarity that mandates, and silencing, within the group, in the name of empowerment for all. This is the lesson of other social movements. ASD children *can’t* speak for themselves, mostly because they are children, but for other reasons too. Without a movement largely driven by parents up to this point, which may evolve as ASD kids come together as adults in future decades, there would be no attention to this issue at all, vaccinations or no vaccinations.”

First, those of us in history of childhood and youth have pointed out time and time again that children CAN speak for themselves and we as adults should listen  More importantly, there IS an autism rights movement led by and for persons with autism.   Seriously, would TR have said that GLBT children and youth need parents to speak for them?  I doubt it.  So why not acknowledge the rights of persons with autism to speak and organize for themselves?

Finally: My report from #SHCY2011

Last month I attended the bi-annual meeting of the Society for the History of Childhood and Youth.  After that, I was fully conferenced out and the thought of writing yet another report was too exhausting to contemplate. So, here at last are some of the highlights — but I’m going to be brief otherwise this will never get done!

My session on Children, School, and Health went well and was well-attended despite being the first panel slot on the first day.  It was also nice to get my paper done and out of the way early.  If you attended and liked (or disliked) what you heard, feel free to comment here.

Later that afternoon, Judith Warner gave the keynote address entitled “The Construction of the Medicated Child” based on her best-selling book, We’ve Got Issues: Children and Parents in the Age of Medication.  As in the book, she deflated the myth that children and adolescents are overdiagnosed and overmedicated for mental health problems.  In reality, many children with mental health issues — especially those who lack health insurance — don’t get good care or worse, get no care at all.  She also reiterated what many scholars in childhood studies have noted about earlier “panics” over issues affecting children (e.g. early motion pictures, television, comic books, and most recently, video games) — that children serve as lighting rods for adult anxieties and social problems that affect the larger culture.

Another important “take-away” came from the discussion following the panel on Childhood in the 1970s.  Lori Rotskoff presented on her work on feminist childrearing in the 1970s and observed that even though feminists were challenging established sexist norms they were still children what was “right” — where is the children’s liberation within women’s liberation, she asked.

I spent most of the conference listening (and knitting) and didn’t take very extensive notes unfortunately.  I also must confess that I skipped the last day so I could attend the Alexander McQueen exhibit at the Metropolitan Museum and see a matinee of “The Normal Heart.” (which was great, but I didn’t like it as much as “Jerusalem” which I saw the night before).

Lesson here — don’t attend so many conferences in so short a span of time!  What was I thinking?