I’m going to make this short because I really don’t know what to say…but this is the weirdest ‘memorial’ I’ve ever watched. Poignant speeches about terrible losses interrupted by – not tears – loud cheers, whistles, and applause. WTF? Seriously, U of A…this wasn’t supposed to be a basketball game. Thats it.
I’ve been reading Rebecca Skloot’s nonfiction account of the saga of HeLa, the first strain of human cells which survived and multiplied indefinitely in culture, and which revolutionized a number of medical research fields. However, I think I’ve also learned a little bit about human nature, flipping through the readers’ reviews on Amazon.com.
Most of the reviews are, as expected, glowing. After all, its a fantastic book. But as you dig further into the less glowing reviews, it seems that many readers objected to the book’s in depth portrayal of Henrietta’s family. Some didn’t think that angle belonged in what they had supposed was strictly science writing. In fact, much of the negative reaction to the book seems to revolve around the family:
“They are uneducated and very money hungry. They seem to only care about what type of compensation they can receive from the Hela cells. This is a story of a family that is neither inspiring or noteworthy.”
“These people made really bad life choices and want everyone to feel sorry for them. Their focus on Henrietta is strictly monetary. Poor woman!! Waste of my time.”
“The family comes off very unsympathetic in my opinion. I must admit I didn’t finish the book.”
Personally, I found the family’s story to be the most compelling part of the book. I imagine that your average reader probably has a hard time relating to the struggles of extremely poor african american share croppers’ children. What really struck me was the fact that the family, riddled with physical and mental health complications, some the result of family history, some the result of frightening abuse, and some the result of the constant haranguing, harassing, and even exploitation of those who sought to gain more medical samples from Henrietta’s descendants or cash in on their story, couldn’t even afford to benefit from the medical advances that their mother’s cells brought about.
I found Rebecca Skloot’s portrayal to be sympathetic, but it never shied away from the uglier parts of the family’s story, which includes tales of slavery, murder, incest, con men and less than forthright medical professionals. Henrietta’s youngest daughter, Deborah, is the main focus and most compelling figure of the surviving family, and her quest to find out what exactly happened to her mother and what her mother’s cells had accomplished, and to gain her mother the recognition she felt her mother deserved, led to strokes and nervous breakdowns.
Other members of the family have pushed at various times to gain some sort of financial renumeration. I don’t find this very surprising considering that (1) the family is desperately poor and (2) the medical industry has made billions off of the cells and their benefits. I suppose its easier to be ‘noble’ about financial manners if you don’t have financial troubles. However, it seemed to me that the family’s actions, even in the light of their financial and medical burdens, stemmed far less from greed than from anger: anger at how they had been kept in the dark about what doctors were doing with their mother’s cells, anger about how doctors had continued to take samples from the family without telling them what was going on, and anger about the unauthorized publication of their mother’s medical records and misinformation about her past, her lifestyle, and even her name.
Proceeds of the book will be going in part to help start a scholarship fund for Henrietta’s grandchildren and great grandchildren, and to help pay for her children’s medical expenses. However, the greatest benefit this book does for that family is to give their mother the recognition that they believe she deserves.
Its nice to see the world starting to wake up to the fact that Doctor (and I use the term loosely) Andrew Wakefield is a fraud. Of course this isn’t new news. Over the course of the last year we’ve been reading more and more articles recounting how Wakefield, after being paid off to the tune of four hundred thousand pounds by lawyers hoping to cash in on a class action lawsuit against vaccine manufacturers, did a little manufacturing of his own, crafting a crooked study which purported to show a correlation between vaccines and the onset of autism in children.
No actual correlation, let alone causation, has ever been shown between autism and vaccines of any type. Wakefield’s report was always viewed as ‘bad science’ by the medical community at large, but it is nice to read the paper and see it portrayed today as exactly what it was – fraud, and the very worst type of fraud.
I say worst, because it was the type of fraud that plays upon a parent’s greatest fear – that something to which they might submit their child could result in a possibly life-long debilitating disorder. Parents of autistic children often feel this guilt, misplaced, that it is because of their bad parenting or bad genes or something they did which resulted in their child’s condition. Wakefield and his financial backers took advantage of those emotions. They created an imaginary nemesis upon which parents could refocus their anger, relieving themselves of the burden which they had mistakenly carried. Thats what made it such an attractive con.
And of course the result was people like Jenny McCarthy going on Oprah and telling millions of mothers not to give their children the protection they deserved. The results in America weren’t significant. However, in Britain, the anti-vaccination craze took off like wildfire, and the outcome was predictable: a rise in the number of cases of illnesses which children shouldn’t have to face in the developed world, and no drop in the number of diagnoses of autism.
In the wake of this hoax I hope that people will finally learn to be more skeptical in the future. Just because something calls itself a ‘scientific study’ doesn’t make it so. How was it conducted? Who paid for it? Has it been reproduced? What does it actually reveal? These are questions everyone should ask themselves before they jump on the next psuedo-science scare wagon.
1/08/11 – Giffords Shooting Highlights Serious Problems In America
Posted: December 23, 2010 in UncategorizedThe shooting in Tuscon, Arizona today of Congresswoman Gabrielle Giffords and a number of bystanders, several of whom lost their lives, has led to widespread speculation about the political leanings of Jarred Lee Loughner, the alleged gunman.
Left wingers have taken to the blogosphere to decry the use of violent imagery by so called “Tea Party” candidates and activists as having led to the tragedy. For example, Sarah Palin’s now infamous crosshairs, or Sharron Angle’s “second amendment remedies.
Meanwhile, right wingers have been just as quick to disown Mr. Loughner and brand him a liberal nut job, because he is alleged to have been a pot smoking atheist who enjoyed reading “The Communist Manifesto.”
The fact of the matter is that Loughner’s comments on political issues were rambling and incoherent. He rambled on about the constitution, inventing currency systems, literacy, mind control and “conscience dreaming”. The most disturbing of his little videos on Youtube, at least in retrospect, was a short film of him burning a flag in the middle of the desert as Drowning Pool sang “let the bodies hit the floor” in the background. In short, Jarred Lee Loughner was disturbed.
Instead of looking to assign blame to which ever political party we most despise, we should be taking note of the fact that throughout what we know of Mr. Loughner’s life there have been warning signs that this young man was mentally ill. School officials report that he was a troubled kid. The military refused to allow him to enlist for ‘undisclosed reasons’. Friends and neighbors report that his behavior was unusual and at times disturbing. However, no one seems to have been able it intervene.
Our mental health infrastructure is a shambles in this country. Incidents like this one only help to reinforce what anyone who’s had a loved one struggling with mental illness already knows, which is that its very difficult to get help for those we know need it in light of current laws and current budget restraints.
These tragedies don’t occur in a vacuum. They are the end result of years of turning the other way while people spiral out of control. Communities need to become more proactive in identifying young people who may be developing the symptoms of serious mental illness, instead of just flagging them as ‘problem children’. Local governments need to stop dismantling mental health institutions and start spending real money to provide treatment for those who cannot afford it, and they need to be given the legal tools to enable them to help those who don’t necessarily realize they are in danger.
