Tag Archives: Eugenics

What Do You Think of When You See the Word “Healthy”?

6 Sep

Up close Star makeup mac, urban decay(Image by Courtney Rhodes used under CC 2.0 via)
 
In late 2013, journalist Katie Waldman examined the juicing trend, which was cropping up in the corners of Western society where there is a heavy focus on modern notions of “natural and organic” (think anywhere from Berlin’s Prenzlauer Berg to Burlington, Vermont and Berkeley, California) as well as in those where people competitively strive to follow the latest fashions in health and beauty (think the high-earning sectors of London, Manhattan or Los Angeles). Lifestyle writers have declared two years later that juicing has staying power, despite Waldman’s disturbing findings. Along with little to no evidence that cleansing the body with juice can be physically beneficial, she revealed that the language of most detox diets echoes the language used by those struggling with disordered eating – i.e., the idea that most of what the masses eat is on par with poison and you’re a bad person if you don’t purge it. She writes:

After days of googling, I still have no idea WTF a toxin is… Cleansing acolytes use the word toxin loosely, as a metaphor for our lapsed lifestyles…. The problem with this way of thinking is that food and weight are not matters of morality. Thin is not “good,” carbs are not “bad,” and in a world of actual pressing political and social ills, your dinner plate should not be the ground zero of your ethical renewal.

I’m neither a supporter nor an opponent of juicing in particular. Anyone should drink whatever they want to drink. But Waldman made a fantastic point about the way the upper and middle classes in the West so often believe one’s health to be a sign of one’s morality.

This idea is hardly new. The eugenics craze of the 19th and 20th centuries—that culminated with the Nazis exterminating “degenerates”—involved Fitter Families contests held at county fairs wherein judges handed out trophies to those deemed to have the best heritage, skin color, and tooth measurements. Professor Alan Levinovitz argues in Religion Dispatches that these attitudes have survived on into the present, altered only ever so slightly: “The sad thing is, it’s really easy to judge people on the basis of what they look like. We have this problem with race. In the same way, it’s really easy to look at someone who’s obese and say, ‘Oh look at that person, they’re not living as good a life as I am. They’re not as good on the inside because I can tell their outside isn’t good either.’ ”

Do we as a culture believe that being “healthy” is about appearance? Dieting often dictates that it’s about behaviors measurable through appearance. Psychologists agree to the extent that their notions of “healthy” are about behavior, but they also frequently intersect with notions of being “good.” But is being “healthy” about being brave, honest, generous and humble? Physicians would generally argue it’s about staving off death. Right-to-die advocates would argue it’s about quality of life over longevity. Is being healthy a matter of what scientists decide? Ed Cara found earlier this year that weight loss does not lead to happiness. Is happiness a measure of being healthy? Or are you only healthy if you suffer for it? Concepts of “healthy” vary vastly from person to person, and across cultures. Is that healthy?

In The Princess Bride—probably the Internet’s second-most quoted source after Wikipedia—the hero cautions, “Life is pain. Anyone who says differently is selling something.”

Yet the villain says, “Get some rest. If you haven’t got your health, you haven’t got anything.”

Whether you agree with any or none of the above, leave me your thoughts on the meaning of “healthy” either in the comments or via an e-mail to paintingonscars[at]gmail.com

 

 

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Would You Give Up A Disabled Baby, And If So, Why?

10 Aug

Youri(Image by Naoya Fujii used under CC 2.0 via)

 

Tonight 60 Minutes will feature the very first interview with the Australian couple that has attracted international scorn ever since the Thai woman they hired to be their surrogate mother publicly accused them of adopting one of the twins she gave birth to while refusing Baby Gammy, the one with Down Syndrome. Hiring a surrogate mother who lives abroad is both legal and unregulated in Australia, with none of the criminal background checks or counseling that are required for domestic surrogacy arrangements.

The Digital Age has seen the rise of prospective parents independently seeking out surrogate mothers online without any oversight, as well as a rise in “re-homing,” wherein adoptive parents join Facebook or Yahoo groups to seek out new parents for a child they’ve decided is harder to handle than they had thought. A disturbing Reuters report last fall profiled a couple who handed over a girl with medical problems they had adopted from Liberia to a new family they had found online, only to later discover that the new parents were known sex offenders.

Yet while black market adoption may be on the rise thanks to the Internet, the history of people rejecting only certain kinds of children is depressingly long. Only 2% of all babies born are disabled, yet half of the children up for adoption in the United States are disabled. Half of them are also black. Chad Goller-Sojourner told NPR this year that prior to his adoption by a white family, he was passed over by more than one black couple for being “too dark.”

I am deeply grateful that my parents did not put me up for adoption, like so many parents of dwarfs before them. Being rejected by your own parents simply for your body feels like a rejection of your very life. But I will not start chanting that parents should never ever make adoption plans for their children until we admit that not everyone is capable of being the sort of parent certain children need. The skills required for accepting your child’s skin color or body shape are not the same skills required for accepting a lifetime of waiver agreements about the deadly risks of invasive surgery. In the real world, some marriages do break down and some parents do become abusive and some parents do murder their half-grown children when they try and fail to cope with their child’s disability. I know a good number of people who are great at working independently but terrible at caregiving. In Far From the Tree, Andrew Solomon profiles a British woman who eventually relinquished custody of her severely disabled daughter to a foster mother, telling the NHS, “I’m not the right mother for this child.” Such honest humility requires some degree of bravery and, as Solomon points out, honors the skills of the foster mother and all parents who keep their commitments to disabled children.

Do some parents give up too easily? Absolutely. But are some children better off far away from their parents? Evidently. Because no two parents are alike, what is best for the child is best decided on a case-by-case basis. The Australian case sounds dreadful, but I’m withholding judgment until the parents have had their say. And as long as there is reproduction, there will always be parents who put their children up for adoption or terminate pregnancies, and society must thus ensure that the means for doing so are absolutely safe and heavily regulated.

But we cannot deny that too many parents end up failing to support certain kinds of children because the society they live in fails to support such kinds of people. Parents can usually see through the B.S. of those who urge them to stand by their kids no matter what and who also regularly make disparaging remarks about scars, fat, or dark skin, and openly wince at the idea of looking like a freak, a wimp, or a pussy. We won’t ever lower the disturbing number of prospective parents who would reject a child with an extra finger or toe until we as a society confront what would cause a parent to think that having an extra finger or toe is too horrific to endure.

During a discussion in college about the individual’s right to make their own medical decisions, I was shocked to hear a bunch of my friends insist that they would rather die than lose the ability to walk. Is it possible to attach such extreme shame to a hypothetical situation for yourself without attaching shame to the situation of others who live that way every day?

When I told one of my fiftysomething mentors about how upset I was by the incident, she smiled and said, “Well, that’s something young people are certainly more likely to say than anyone else.”

A fortysomething friend piped up, “Yeah, that is a very young person thing to say. I swore when I was young that I’d shoot myself if I ever went bald and yet here we are!”

Indeed, while the strains of physical pain and special accommodations and repeated doctor’s appointments are very real, perfection is not. And no matter how far technology advances, the belief that we can guarantee ourselves “normal” children is delusional. After all, unlike Baby Gammy and I, 85% of all disabled people were not born disabled. That’s something to bear in mind when heading to the obstetrician’s or the adoption agency.  

 

 

Degenerates, Nazis, & the U.N.

16 Dec

(Via)

 

A reaction to last week’s post about the U.N. Convention on the Rights of People with Disabilities sparked a behind-the-scenes discussion about whether or not I should allow name-calling in the Painting On Scars comments section.  I like to engage with almost anyone who disagrees with me, but online I know I also tend to only comment on sites that have strict no-drama policies because discussions can become pointless and boring really, really fast when there’s nothing but insults and exclamation points.  I ultimately decided that, for now, any rude behavior speaks for itself: Commenters can name-call all they want regarding people they dislike or say absolutely nothing, because in both cases they’re not going change anyone’s mind.

That said, I will always tell any supporters if they adopt tactics I want to have nothing to do with.  And it’s important to call out invectives that are particularly malicious in a way some might not be aware of.  The comment in question last week referred to the U.N. as “a bunch of degenerates, throat cutters, and other trash.”  Using the word “degenerate” in a discussion about disability rights is exceptionally insensitive, if not mean-spirited.    

The first time I read the word out loud to a friend here in Germany, his eyes shot up and said, “Be very careful with that word.  It immediately makes everyone think of the Nazis.”  And by “Nazis,” he meant the actual, goose-stepping, genocidal nationalists who tried as best they could to make sure disabled people either died off or were killed off.  Not “Nazis” in the Internet-temper-tantrum sense of “anyone I disagree with.”  The word also evokes the brownshirt term “degenerate art.”  Modern German sensitivity to the term is the result of looking honestly at the nation’s history of ableism.

Action T-4 was the first genocide program ordered by the Nazis, calling for the extermination* of those deemed by doctors to be “incurably sick.”  Between 200,000 and 300,000 disabled people were killed, though many were used for scientific experiments first.  *And by the way, I DETEST any use of the term “euthanasia” in this context.  “Euthanasia” literally means ending life to end pain, and for this reason I find it applicable where patient consent has been given or where pets are concerned.  But to imply that what the Nazis did to disabled citizens was anything other than murder is to dehumanize the victims.

The forced sterilization programs of disabled people in Nazi Germany, meanwhile, were modeled after American laws.  The very first forced sterilization law in the world was introduced in Indiana in 1907, and 30 states followed suit.  The Supreme Court upheld Virginia’s eugenics program in 1927 and it remained on the books until 1974.  Oliver Wendell Holmes summarized the Supreme Court’s decision thusly:  

It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…  Three generations of imbeciles are enough.

The Nazi poster featured above focused instead on the expense: “It costs the German people 60,000 Reichsmarks to keep this genetic defective alive.  Fellow German, that is your money!”  After World War II, the Nuremberg Doctors’ Trial and the resulting Nuremberg Code discouraged ableist politicians from openly promoting eugenics on either side of the Atlantic.  But it wasn’t until 1981, the year I was born, that the disability rights movement in West Germany came into full swing and sought to combat ableism head-on. 

Almost every human rights movement is said to have a trigger moment when oppression went a step too far and the people fought back.  For the American Civil Rights movement, it was the death of Emmett Till.  For the gay rights movement, it was the Stonewall Uprising.  For the German disability rights movement, it was the Frankfurt Travel Ruling of 1980, brought about by a woman suing her travel agency for booking her in a Greek hotel where a group of Swedish disabled guests were also vacationing.  She claimed that having to see and hear disabled people had ruined her trip and the judge agreed with her.  Protests exploded across the country and the next year, which the U.N. had declared the Year of the Disabled, several West German disability rights groups organized and formed agendas.  They used the U.N. events to draw attention to the dire situation of disabled citizens in the country.

Two years later, the Green Party entered the Bundestag for the first time and was the first to voice support for disability rights as a human rights issue.  The Greens were born out of the 60s student movement in West Germany.  The movement was famous for protesting what most young activists across the Western world opposed at the time: the Vietnam War (and war in general), traditional gender roles, consumerism, pollution, etc.  But first and foremost, the West German 68ers were young people demanding the nation come to terms with its dark past, decrying that an overwhelming number of the nation’s leaders and officials were former Nazis.  Their commitment to human rights was inspired by an unfaltering awareness of how horrific things can get.  Their actions led to the passing of anti-discrimination laws and an amendment to the German Constitution in 1995, modeled after the Americans with Disabilities Act.

Another result of the students growing up and entering the government came in 1983 when conscientious objectors to the draft were no longer required to argue their motivations before a board for approval. This made it far easier for young men to opt for a year of community service in lieu of military service.  By 1991, half of those drafted became conscientious objectors.  For over 30 years, scores of German 19 year-old boys worked with mentally ill children at the Red Cross, in nursing homes, as assistants for physically and mentally disabled teenagers, and for Meals on Wheels.  This has created generations of men who often speak fondly of the experience and who are usually less fazed by disabilities or dependence, demonstrating a tolerance and openness that seems extraordinary for their age. 

The draft was discontinued last year and since then the community service option has been suspended.  Military debates aside, I agree with conservative politicians who have called for preserving the community service requirement and expanding it to women because it is an excellent government tool for combating both ableism and social segregation on a personal level.  Ableism is still a tremendous problem here in Germany, but in three generations, the country has changed from one of the most ableist societies on earth to one of the least.   The word “degenerate” signifies humanity’s capacity for cruelty and sensitivity to the word signifies our commitment to never repeat it.

To be fair, the word in last week’s comment was not aimed directly at disabled people but at the U.N. members working for disability rights.  And frankly, I’m a little insulted.  Because if anyone’s a degenerate here, it’s me. 

I am scientifically a mutant by virtue of my fibroblast growth receptor gene 3.  (Yes, yes, my genetics professor explained that technically all of us are mutants, but mostly just in boring ways… )  I am a semi-invertebrate now that pieces of my backbone were removed six weeks ago.  And I don’t take the last empty seat on the subway and request my friends slow down to my pace when walking for nothing.  So if anyone’s gonna go calling the organization that sprang from the Nuremberg Trials and founded the Universal Declaration of Human Rights a bunch of degenerates, they gotta get through me first.  I’m a degenerate living in Germany and proud of it.