From the archives: How the Affordable Care Act will help people with disabilities

President Obama signs the Affordable Care Act. Photo is in the public domain.
President Obama signs the Affordable Care Act. Photo is in the public domain.

Now that congressional Republicans are shamefully dismantling the Affordable Care Act, I thought I would reprise this 2010 piece that I wrote for The Guardian shortly after President Obama signed the bill into law. (I have left the Britishisms intact.) The death of Obamacare is going to have a huge, negative effect on millions, including people with disabilities.

Previously published by The Guardian.

It was some years ago that my wife and I learned a crucial fact about living in America with a disability.

Our daughter, Rebecca, now 17, had been diagnosed at birth with achondroplasia, a genetic condition that is the most common form of dwarfism. At five months she ran into dwarfism-related breathing complications that required a tracheostomy, oxygen and home nurses for a good part of the day and night. It was a harrowing time in our lives — not to mention hers. But by the time she was three years old she was fully recovered.

One day when Becky was still a baby we found ourselves at a gathering of Little People of America, an organisation akin to Britain’s Restricted Growth Association. We were looking down — way, way down — at our soon-to-be-friend Ruth, the local LPA director. Ruth told us that Becky should focus on a career at either a large corporation or the federal government. That way, she said, Becky would never have to worry about having health insurance.

We were appalled. It’s not that working for a big company or a government agency is such a terrible fate. Ruth herself is a federal bureaucrat, and a good one. So, for that matter, was my father. But the idea that our daughter should shy away from launching a business or joining a small start-up company lest she lose her health coverage was offensive to us.

Those days are now behind us — and her. After Sunday night’s historic vote in the House of Representatives, we count Becky among the tens of millions of Americans who have been liberated. It’s long overdue.

Much of the attention over the past few days has rightly focused on the 32 million uninsured Americans who will be covered, and on new regulations that will prohibit insurance companies from denying benefits to people with pre-existing conditions.

What hasn’t been emphasised enough is that many of those folks with pre-existing conditions, like Ruth, have good jobs and great coverage — but that some of them might like to do something else with their lives. Maybe an accountant who’s recovered from cancer wants to try his hand at consulting. Maybe a mother with an autistic child has a killer idea for a restaurant. Maybe a wheelchair-using lawyer at a large firm would like to hang out her own shingle. Now there’s nothing to stop them.

It is the release of this pent-up entrepreneurialism that is among the most exciting aspects of healthcare reform. When Barack Obama has spoken about healthcare in the context of the economy, he has stressed the high cost of insuring employees. For instance, in the president’s address to a joint session of Congress last September, he described cost as the reason that “so many aspiring entrepreneurs cannot afford to open a business in the first place”. Obama was right, but he overlooked what happens when entrepreneurs themselves have medical conditions that prevent them from taking risks that could benefit society as a whole.

There are other reasons, of course, to get excited about healthcare reform, even if you’re a middle-class family with good coverage and no health issues. For many families, the ability to insure your adult children under your own plan until they are 26 is a change of enormous importance. Sticking with the personal theme of this commentary, our 19-year-old son, Tim, plans to spend the next several years establishing himself as a commercial photographer. Now he – and we – have one less thing to worry about.

We are hardly unusual. Across the country, in red states and blue, in households that voted for Obama and those who think he’s a “socialist”, folks are going to discover their lives have been made better in measurable ways. The idea that Republicans will repeal the healthcare law is laughable. Instead, as Republican strategist David Frum, a speechwriter for the second president Bush, wrote on Sunday, the GOP’s just-say-no strategy has led to a “disaster” for the party’s prospects.

What happened on Sunday restored some faith that our political leaders can work on behalf of the people who elected them. It was a great moment for Obama and House speaker Nancy Pelosi, who overcame odds that seemed insurmountable following Republican Scott Brown’s surprise election to the US Senate in January.

It was also a great moment for all of us.

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The M-word, the C-word (no, not that C-word), and The Boston Globe

Update. From Ellen Clegg, the ever-responsive editor of The Boston Globe’s opinion pages:

You would think that, somewhere along the way, the climate activist Bill McKibben would have learned that the word midget is incredibly offensive to people in the dwarfism community—along the lines of the N-word among African-Americans. Or you’d think someone working for The Boston Globe’s opinion pages would know it.

Apparently not. Because here are the first two sentences of McKibben’s commentary in today’s Globe: “The Democrats were given one great gift last year. Even as they lost state legislatures and control of the Senate, even as they surrendered governors’ mansions and somehow turned over the White House to a moral midget, one thing broke their way.”

Here is some background on the M-word from Little People of America. I wrote about how the word came into existence in my 2003 book, “Little People.” In 2009 Clark Hoyt, then the public editor of The New York Times, wrote that the term would henceforth be banished.

And before you ask, “Well, how is the M-word offensive when it’s not referring to people with dwarfism?,” ask yourself what contexts would be acceptable for using the N-word. None, right? There you go.

So if the M-word doesn’t already have an entry in the Globe’s stylebook, I hope that’s rectified. And that an email reminder goes out to everyone.

Now that that’s settled, shall I point out that the Globe’s opinion pages also allowed the alt-right insult cuckold to sneak into today’s edition? It’s normally rendered as cuck, but I heard the dog whistle. Woof! If the term is new to you, GQ has an explainer about the term’s pornographic, racist origins.

Style note: Given that I do most of my writing these days for Peter Kadzis and company at WGBHNews.org, I try to stick with their house style at Media Nation, which makes it easier for us to share content. I am told we’re going to go all-in with AP style, with a few exceptions. (We’re keeping serial commas! Yay!) So if you’re wondering why newspaper, magazine, and book titles are not in italics today, that’s the reason. And if you didn’t notice, then you lead a healthier, more balanced life than I do.

Talking about ‘Little People’ in Bridgewater on Oct. 3

Charles Stratton (a.k.a. Tom Thumb) and his wife, Lavinia Warren
Charles Stratton (a.k.a. Tom Thumb) and his wife, Lavinia Warren

If you’re in Southeastern Massachusetts, I hope you’ll consider dropping by the Bridgewater Public Library on Saturday, Oct. 3, at 11 a.m. I’ll be giving a talk on “Just Like Us: Images of Dwarfism from Tom Thumb to Reality TV,” based on my 2003 book “Little People.” The event is co-sponsored by Bridgewater State University.

You can read “Little People” online for free. But if you’d like to purchase a copy through the Harvard Book Store, just click here. I’ll also have a few copies available for sale after the talk.

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.