Tag Archives: dwarfism

Why I’m voting against physician-assisted suicide

Dorothy Wertz

I have a simple reason for voting against Question 2, the “Death with Dignity” referendum, which would, if passed, legalize physician-assisted suicide in Massachusetts. People in the disability-rights movement who I respect are against it. And I agree with their reasoning.

Unlike other people you may have heard from on both sides of the question, I do not have any heartbreaking or poignant stories to share. Rather, I have a perspective that I gained a decade ago when I was researching my first book, “Little People.”

Among other things, I learned disability-rights activists worry that advances in medical technology are making it increasingly easy to diagnose genetic conditions in utero — thereby leading to the likelihood that parents will select abortion, even in cases (such as dwarfism) where the disability is not particularly severe or incompatible with what society considers to be a “normal” life.

Indeed, my wife and I encountered that attitude ourselves when our then-infant daughter saw a geneticist who wanted us to know there was nothing that could have been done. What she meant was that Becky’s dwarfism couldn’t have been diagnosed in utero (it could today), and thus we shouldn’t feel bad that we weren’t given a chance to choose abortion.

We were shocked, but I guess we shouldn’t have been. And in researching “Little People,” I learned from the geneticist Dorothy Wertz (pdf) that many people would choose abortion if they were told their child would be a dwarf — and, significantly, that medical professionals were more pro-abortion than lay people.

That’s the attitude disability-rights activists are worried about with regard to Question 2: a negative approach toward people who are sick or disabled, and who might be pressured into choosing suicide by family, insurance companies and doctors. And that’s why I’m voting no.

I urge you to read a truly moving essay in this week’s Phoenix by S.I. Rosenbaum, and to listen to an interview that was broadcast in September by WBUR Radio (90.9 FM) with disability-rights activist John Kelly, who opposes Question 2, and Dr. Marcia Angell, who’s for it. You can also learn more about the reasons for opposing physician-assisted suicide at Second Thoughts. The argument in favor is available at Death with Dignity.

What follows is an excerpt from “Little People” dealing with research about attitudes about disability and abortion.

***

I interviewed Dorothy Wertz, a psychiatrist affiliated with the Eunice Kennedy Shriver Center in Waltham, on a cold February day in the sunroom of her home on Massachusetts’s South Coast. Her husband was dying of lung cancer. She would die a year later. Nevertheless, she cut a flamboyant figure, tall and with a strong physical presence despite her advanced years, wearing a pillbox hat, turquoise earrings, and an enormous silver-and-turquoise necklace that looked heavy enough to weigh her down. I’d met her years earlier when I took part in a study she’d overseen regarding the attitudes that parents of disabled kids hold toward the medical establishment. I liked her forthright, down-to-earth manner. What I didn’t like so much was what she had learned about attitudes toward disability — including dwarfism.

In the late 1990s Wertz conducted a study of about two thousand people — 1,084 genetics professionals, 499 primary-care physicians, and 476 patients. One of the disabilities that participants were questioned about was achondroplasia, the most common form of dwarfism. The results were stunning. Among the genetics professionals, 57 percent would choose abortion if it were detected in utero; among physicians, 29 percent; and among patients, 24 percent.

To bracket this, let me pull out two other findings. The first pertains to Down syndrome, certainly a serious genetic condition, but one not incompatible with a good quality of life. Here the proportion of genetics professionals who would abort was 80 percent; physicians, 62 percent; and patients, 36 percent. The second involves a genetic predisposition to severe obesity, which is not a disability at all, or even destiny. After all, parents can teach their kids to eat properly and lead healthy, active lives. Yet even in this instance, 29 percent of genetics professionals would choose to abort, as well as 13 percent of physicians and 8 percent of patients.

What’s frightening about all of this is that we are closer to screening for such conditions on a routine basis than many people realize. Some day — perhaps in a decade, perhaps two or three — it will be possible to lay out a person’s entire DNA on a computer chip, all thirty thousand or so genes, and compare that person’s DNA to the ideal. Such chips could be generated for early-term fetuses just as easily as for those already born. Once the use of such technology becomes routine, it would cost “mere pennies per test,” as Wertz has written, to screen fetuses for thousands of genetic conditions. Including, of course, achondroplasia and several other types of dwarfism.

Wertz’s study points to another potential concern. Across the board, her findings show that ordinary people are far less likely to choose abortion than are medical professionals. (To be sure, one in four ordinary couples would choose abortion if they learned their child would have achondroplasia, which is high by any measure.) Yet it is medical professionals who will counsel couples when they learn that the child they are expecting would have a disability. What kind of pressure will these professionals use to obtain what is, to some of them, the preferable result? If we had learned the fetus Barbara was carrying in the early spring of 1992 would have severe respiratory problems and could have a whole host of other complications as well, what would we have chosen to do? There was no Becky at that point, only a possibility. And the possibility would have sounded more frightening than hopeful.

Little People of America has long argued that prospective parents who learn that their child will have a type of dwarfism should be provided with information about the good lives that most dwarfs lead, and even be given a chance to meet dwarf children and adults. It’s a great idea. But will it happen? And at a time of skyrocketing medical costs, are there too many social pressures against that happening? There’s no doubt that, in many instances, abortion would be in the best interest of insurance companies. Think of all the money they could save if they refused to cover a fetus that has been diagnosed with a potentially expensive genetic condition. Some parents, of course, would not choose abortion because of their religious or moral beliefs. But what about the vast majority of us — the people who regularly tell pollsters that they’re pro-choice, although they may be deeply uncomfortable with abortion personally? Would they be able to resist — would they, should they, even attempt to resist — when faced with the possibility of financial ruin?

And abortion is just one part of this, a crude, archaic approach that will likely fade away with improvements in medical technology — improvements that will raise few of the moral qualms that so divide the culture today. For instance, when you think about it, sex is a really messy, random way of reproducing. Sure, it’s fun. But look at all the things that can and do go wrong. In his book Redesigning Humans, Gregory Stock argues that in vitro fertilization will someday be seen as the only proper way to have children. “With a little marketing by IVF clinics,” he writes, “traditional reproduction may begin to seem antiquated, if not downright irresponsible. One day, people may view sex as essentially recreational, and conception as something best done in the laboratory.”

Even average-size couples who wouldn’t abort a fetus with achondroplasia would, in all likelihood, choose against implanting an embryo with the mutation. You’ve got five embryos in that Petri dish over there, and you can only implant one. This one has the genetic mutation for Down syndrome; that one has the mutation for achondroplasia; the other three are mutation-free. All right, which one do you think should be implanted?

And thus we will take another step down the road toward the “new eugenics” — a road that, in Stock’s utopian vision, will include artificial chromosomes to include spiffy new designer genes that will protect our descendants from disease, help them to live longer, and make them smarter, better, happier, and just generally imbued with oodles of wonderfulness.

Ultimately Stock posits a world in which we’re going to eliminate achondroplasia and hundreds, if not thousands, of other genetic conditions, predispositions, and tendencies. And we’re going to do it either by eliminating any individual whose genes we don’t like — or we’re going to change the genes.

How tech gave “Little People” a second life

I’ve got an essay in the new issue of Nieman Reports on how technology enabled me to revive “Little People,” my 2003 memoir on raising a daughter with dwarfism — online at first, and then later as a print-on-demand paperback.

And yes, you can buy a copy. I’m so glad you asked.

More progress on the “M”-word

Robert Bertsche, a prominent First Amendment lawyer in Boston, passes along the latest news from the AP Stylebook Online (yes, I’m too cheap to subscribe):

dwarf The preferred term for people with a medical or genetic condition resulting in short stature. Plural is dwarfs.

midget Considered offensive when used to describe a person of short stature. Dwarf is the preferred term for people with that medical or genetic condition.

My 2004 edition of the AP Stylebook does not contain an entry for either word. Clearly the dwarfism community is making progress in its efforts to educate the public about the “M”-word.

In 2009, the New York Times’ then-public editor, Clark Hoyt, wrote that the Times had concluded the “M”-word was offensive.

I discuss the rise and fall of the “M”-word in Chapter Seven of my book on dwarfism, “Little People.”

You just can’t keep a bad word down

For those of us in the dwarfism community, it sometimes seems that the outside world is mainly interested in two things: how people with dwarfism are depicted in popular culture and the continued debate over the word “midget,” which is regarded as offensive by nearly everyone within the community.

Here is former New York Times public editor Clark Hoyt’s 2009 column in which he acknowledges that the “M”-word is offensive and would no longer be used in the Times.

Last week the “M”-word popped up when commentator Bernard Goldberg used it on “The O’Reilly Factor” while critiquing former MSNBC talk-show host Keith Olbermann. In observing that Olbermann’s relatively low ratings in comparison to Fox News were nevertheless higher than anyone else’s at MSNBC, Goldberg compared Olbermann to “the tallest midget in the room.”

My friend Bill Bradford, who’s the senior vice president of Little People of America, called my attention to it on Facebook, and we hashed it out a bit. My inclination was to give a pass to Goldberg on the grounds of his well-documented cluelessness. But another friend, Julie Holland, quickly discovered that Goldberg knew exactly what he was saying. Last February, in defending the use of such charming terms as “Negro” and “retarded,” Goldberg told Bill O’Reilly:

If you use the word midget, the little people community are going to jump all over you. I mean not literally, but they’re going to get on you.

That sound you hear in the background is O’Reilly snickering.

On Sunday, meanwhile, the Boston Herald ran a feature on a show at the Seaport World Trade Center charmingly called “Motorcycles, Midgets and Mayhem,” starring dwarf wrestlers called the Half-Pint Brawlers.

Another LPA friend, District 1 director Barbara Spiegel, is quoted as objecting both to the spectacle and to the use of the “M”-word. The story, by Renee Nadeau Algarin, is benign enough, and I’m not suggesting the Herald should have ignored it. But it’s accompanied by an extensive slide show and a come-on to buy reprints. The comments are about as bad as you would expect.

There’s no question that the way people with dwarfism are depicted in the media is far more positive than it was a generation or two ago. Reality shows such as “Little People, Big World” and “The Little Couple” have helped normalize dwarfism in the eyes of the public.

Yet in the more benighted corners of the media, it seems that things haven’t changed much at all.

Big news about “Little People”

I am very excited to announce that my hometown of Middleborough has adopted my book on dwarfism, “Little People,” as its high-school summer-reading book. Students and teachers at Middleborough High School (from which I graduated in 1974) will be asked to read “Little People” and be prepared to discuss topics such as genetics, history and disability throughout the school year. I’ll be visiting a few times.

When Doug Haskell, who chairs the MHS English department, told me about the selection a couple of months ago, I had to scramble. The book has been out of print for several years. There was also no reliable way of estimating how great demand would be  — the full text of the book is already available online for free, and no doubt a lot of students will try to read it that way.

So, working with Bronwen Blaney at the Harvard Book Store of Cambridge, I put together a print-on-demand paperback edition, thus eliminating the need to print a bunch of copies that may or may not sell. Not to go too heavy on the marketing, but I was pleased with how well it came out — it really looks and feels like a trade paperback. The price, $16, is pretty reasonable, given that the list price of the hardcover edition was $25.

I have completely retooled the website using WordPress.com. I’ve also created a Facebook group, where I hope students, teachers and anyone else who is interested will feel free to discuss “Little People” and issues related to dwarfism.

A few thoughts on China’s dwarfism theme park

Billy Barty and Midgets of America gather in Reno, Nev., in 1957.

There’s a fascinating story in today’s New York Times about a theme park in China that stars people with dwarfism. Sharon LaFraniere writes that the park, the Kingdom of the Little People, is controversial because it depicts dwarfs in demeaning roles. And there’s no doubt it’s jarring to modern Western sensibilities. But I’m not sure it’s really that simple.

For one thing, it’s clear from the story that, for people with disabilities living in China, the Kingdom of the Little People is a pretty good gig. Here’s a relevant excerpt:

Many performers said they enjoyed being part of a community where everyone shares the same challenges, like the height of a sink. “Before, when we were at home, we didn’t know anyone our size. When we hang out together with normal-size people, we can not really do the same things,” said Wu Zhihong, 20. “So I really felt lonely sometimes.”

For another, I think those of us involved with the dwarfism community sometimes tend to forget the reality of the not-too-distant past. Gary Arnold, spokesman for Little People of America, is quoted as saying, “I think it is horrible. What is the difference between it and a zoo?”

Arnold’s point is well-taken, to an extent. Yet LPA was founded by an actor, the late Billy Barty, and the group originally came together in the late 1950s under a banner that read “Midgets of America” — something that would provoke protests today.

Moreover, a number of people with dwarfism, including intelligent, successful people who are LPA members in good standing, have exploited their unique features to get work in the entertainment business. And movies like “The Station Agent” remain the exception.

In the last few years we’ve seen the mainstreaming of dwarfism, due in large measure to television series such as “Little People, Big World” and “The Little Couple.” As I’ve written before, I think such shows are, overall, a positive. Yet we’re kidding ourselves if we think they’re not on some level exploitive as well. Who would sit on the couch and watch average-size, non-dysfunctional (my Gosselin caveat!) families go about their daily lives?

Finally, you’ll note that I did slip in the word “dwarf” even though Arnold is quoted as saying that some find it offensive. Unlike the M-word, on which there is universal agreement as to its offensiveness, the notion that “dwarf” is offensive is not a mainstream view within LPA, although Arnold is right that there are those who don’t like it. But it is a word my daughter uses, and I am not offended.

You didn’t think I was going to close this out without flogging my book, did you? Here you go.

You will also note, when you look at the photos that accompany the Times story, that one of them is the same picture that was hilariously misidentified yesterday as Secretary of State Hillary Clinton and Chilean President Michelle Bachelet.

The R-word and the M-word (and the F-word!)

Lauren Beckham Falcone has a good column in today’s Boston Herald, criticizing White House chief of staff Rahm Emanuel for using the phrase “fucking retarded.” Falcone, who has a daughter with Down syndrome, writes:

Here’s the deal: the R-word is not an innocuous euphemism. It’s as hateful and belittling and bullying as racial slurs and homophobic epithets and sexual harassment.

Now, of course, Falcone is not responsible for her co-workers at the Herald. But it’s long past time for editors there to ban the word “midget,” a demeaning term for people with dwarfism. I realize Howie Carr’s head might explode the next time he tries to describe Bill Bulger as something other than “the Corrupt Midget,” but he’ll get over it.

By the way, it’s nice to see that we’ve evolved to the point at which people are more offended by the R-word and the M-word than they are by the F-word.

More on the difference gene

Last week I wrote about a new, cheap test that will tell prospective parents whether their children are at risk of having one of 100 or so different genetic conditions, including two forms of dwarfism.

Today I expand on that theme in the Guardian, arguing that such screening is tied to our conflicted feelings about difference.

Targeting the difference gene

A major theme of my 2003 book on dwarfism, “Little People,” was what would happen in the not-too-distant future when inexpensive tests would be developed to detect the 100 or so most common genetic conditions in utero. Would dwarfism and other human variations be eliminated? How would it change our uneasy relationship with difference, which we both celebrate and fear?

Now it’s starting to happen. The New York Times reports today that a company called Counsyl has come up with exactly such a test. It costs only $698 for couples. It’s not an in utero test; rather, the aim is to tell would-be parents whether they are carriers of genetic conditions. And there are questions as to how effective the test will be. But we have finally reached the starting line.

The most common form of dwarfism, achondroplasia, is not on the list, and there’s a good reason for that: it’s a dominant condition. If you have the gene, you’re a dwarf, and a carrier by definition. But diastrophic dysplasia and cartilage-hair hypoplasia, recessive forms of dwarfism, are on the list. (For those of you who have seen “Little People, Big World,” Amy and Zach Roloff have achondroplasia. Matt Roloff has diastrophic dysplasia.)

And what are you supposed to do if you learn you are a carrier? Counsyl calls these “Preventable Genetic Diseases Covered by the Universal Genetic Test.” We get the picture, and it’s mighty chilling.

We are all entitled to as much information as possible. It’s up to each of us to decide what to do with that information. Nevertheless, you can’t help but be concerned about where this is going to lead.