Last semester I had the honor of working as a mentor to a Nigerian journalism student, Oluwabukolami Omolara Badmus, as part of the Disability Justice Project.
Bukola, as she is known, is a 33-year-old disability-rights activist and feminist based in Lagos. She is the financial secretary and Lagos state coordinator for the Lionheart Ability Leaders International Foundation (LALIF). Badmus also teaches at a public high school.
For her final project, Badmus produced a short documentary about DeafBlindness. Please have a look.
The Disability Justice Project is run by my Northeastern colleague Jody Santos. Back in the day, we were colleagues at the Phoenix; Jody worked for the Providence edition and I was based in Boston.
President Bush signs the Americans with Disabilities Act. Photo via Wikimedia Commons.
Two giants in fighting for the dignity of people with disabilities have died. The better known is President George H.W. Bush, whose long list of accomplishments includes championing the Americans with Disabilities Act, which he signed into law on July 26, 1990. Here’s an excerpt from his remarks that day:
Three weeks ago we celebrated our nation’s Independence Day. Today we’re here to rejoice in and celebrate another “independence day,” one that is long overdue. With today’s signing of the landmark Americans for Disabilities Act, every man, woman, and child with a disability can now pass through once-closed doors into a bright new era of equality, independence, and freedom. As I look around at all these joyous faces, I remember clearly how many years of dedicated commitment have gone into making this historic new civil rights act a reality. It’s been the work of a true coalition, a strong and inspiring coalition of people who have shared both a dream and a passionate determination to make that dream come true. It’s been a coalition in the finest spirit — a joining of Democrats and Republicans, of the legislative and the executive branches, of Federal and State agencies, of public officials and private citizens, of people with disabilities and without.
The other champion of disability rights is retired federal judge Joseph Tauro, who, as Bryan Marquard put it in The Boston Globe, “issued rulings that forced the state to spend millions more to care for the developmentally disabled and to create lifetime individual treatment plans for patients.”
As a district court judge, Tauro presided over lawsuits aimed at calling attention to the horrendous and shameful treatment of the developmentally disabled at our state hospitals. He was involved in those cases for more than two decades. I was especially struck by this from the Globe obit:
In 1973, Judge Tauro first toured the Belchertown facility with Benjamin Ricci, a college professor whose son was at the school. Before letting the judge leave, Ricci brought him to a remote part of the grounds “where there was a graveyard that had no gravestones, just plugs on the ground with numbers on it,” Judge Tauro recalled in a 2006 Globe interview.
“And he said, ‘I know you can only do so much, but do you think you can make them give all these people gravestones?’ I came very close to crying when he made that request. I just nodded at him, and of course I had that burned in the back of my head,” Judge Tauro added. “And we, fortunately, did a lot more than that.”
RIP to both President Bush and Judge Tauro, who dedicated themselves to a life of public service.
Work-force reductions at The Boston Globe. The end of WFNX as an over-the-air radio station. “Local” news from the Philippines. Possible bankruptcy at GateHouse Media.
These were a few of the top 10 Media Nation posts of 2012 as determined by Google Analytics and WordPress’ own internal statistics.
Most people who read Media Nation come in via the home page, which means that any notion of a “top 10” is dubious. Usually it means that a particular post got retweeted a lot on Twitter or was linked to by a popular media website such as JimRomenesko.com.
But the list isn’t entirely without meaning — and one takeaway for me is that Media Nation’s role as an aggregator and a curator may be its most important. I’ll keep that in mind in the year ahead.
Here is my top 10 for 2012.
1. The Boston Globe keeps on shrinking (July 23). Despite some encouraging signs in the form of rising digital-subscription numbers and a continued commitment to first-rate journalism, The Boston Globe, like nearly all daily newspapers, continues to struggle financially. Last summer Media Nation obtained a memo from Globe publisher Christopher Mayer announcing another wave of downsizing at the Globe and its sister paper, the Telegram & Gazette of Worcester.
2. Donna Halper on the future of radio (May 17). Friend of Media Nation Donna Halper was kind enough to write a guest commentary, and her post turned out to be the second most popular of 2012. Halper wrote following an announcement by the Phoenix Media/Communications Group that it would sell WFNX’s broadcast frequency, 101.7 FM, to Clear Channel. Fortunately for local music fans, by the end of 2012 WFNX and the Globe’s RadioBDC were engaged in a spirited competition of online-only local music stations — the real future of radio.
3. Long-distance “local” journalism (July 5). The public radio program “This American Life” and the journalist Anna Tarkov reported extensively on Journatic, which helps community newspapers cuts costs by outsourcing some of their local coverage. At its worst, news was being compiled by underpaid Filipino workers writing under fake bylines. Dubbed “pink slime” journalism by one former practitioner, Journatic underscored what debt-ridden corporate chains will do to survive — and thus demonstrated the importance of independent local journalism.
4. And Joe Scarborough thinks “Morning Joe” is awesome (Jan. 1). A full-page ad in The New York Times for the wretched MSNBC program “Morning Joe” started the gears whirring when I noticed one of its celebrity endorsers was Tom Brokaw. Who, uh, appears on “Morning Joe.” I got to work, and soon found that Politico, which was quoted as praising the program, had an undisclosed partnership. The ad even stooped to using seemingly positive quotes from two reviewers who actually didn’t like it much at all. Disingenuous, to say the least.
5. More bad news for GateHouse Media (March 19). By now it’s not exactly news when executives at GateHouse Media, struggling with $1.2 billion in debt, pay themselves handsome bonuses. (Nor is that unusual at newspaper companies.) In 2012, though, there was a wrinkle at the chain, which owns some 100 community newspapers in Eastern Massachusetts. Jack Sullivan of CommonWealth Magazine paged through the company’s financial disclosures and discovered that officials were openly raising the possibility of a bankruptcy filing.
6. David Gregory debates himself (Oct. 1). The host of “Meet the Press” was brought in to moderate the second televised debate between Republican Sen. Scott Brown and his Democratic opponent, Elizabeth Warren. Unfortunately, it was all about David Gregory. Good thing the candidates were forced to weigh in on whether Bobby Valentine deserved a second year as Red Sox manager. Warren blew the question but won the election.
7. From Newtown, a plea for media restraint (Dec. 17). I republished an open letter from John Voket, associate editor of The Newtown Bee, to his colleagues at the New England Newspaper & Press Association following the massacre at Sandy Hook Elementary School. Voket wrote about “reporters and media crews invading the yards and space of grieving survivors, school staff and responders,” and asked editors “to remind your correspondents that most are still requesting to be left alone.” A heartfelt message from ground zero.
8. Calling foul on politicians who lie (Aug. 30). It would be hard to come up with a more falsehood-laden performance than U.S. Rep. Paul Ryan’s speech at the Republican National Convention. Ryan’s lies prompted me to wonder how far the balance-obsessed media would be willing to go in labeling them for what they were.
9. At CNN, getting it first and getting it wrong (June 28). My instant reaction to CNN’s false report that the U.S. Supreme Court had overturned the individual mandate in the Affordable Care Act. At least CNN executives flogged themselves in the public square. As we later learned, Fox News made the same mistake — and refused to apologize.
10. An unconscionable vote against the disabled (Dec. 5). My reaction to Senate Republicans’ rejection of a United Nations treaty on the rights of the disabled — a treaty modeled after the Americans with Disabilities Act, championed by President George H.W. Bush, a Republican.
Ghosts of 2011. Oddly enough, the single most popular post of 2012 was one I wrote in 2011 — a fairly terse item on Jay Severin’s return to the Boston airwaves, a comeback that proved to be brief. As I wrote last year, I’ve put up several Severin posts that have generated huge traffic, and I have no idea why.
Bob Dole in 2008. Photo (cc) by Kevin Rofidal and republished under a Creative Commons license. Some rights reserved.
It’s hard to imagine a more disgraceful moment for the modern Republican Party.
The Senate was voting on whether to accept a United Nations treaty on the rights of the disabled — a treaty that was reportedly modeled after the Americans with Disabilities Act, one of the great accomplishments of President George H.W. Bush, a Republican.
Former Republican senator Bob Dole, 89, sitting in a wheelchair, was on hand to lend his support. Dole, of course, was disabled long before old age rendered him a wheelchair-user — a consequence of his heroism in World War II.
And Republican senators voted against the treaty, 38-8. Not a single Democrat voted against it. Sixty-one senators were in favor — five short of the two-thirds needed.
We in Massachusetts, at least, can hold our heads high: Sen. Scott Brown was among the hardy band of Republicans who voted in favor. And Democratic Sen. John Kerry delivered what the New York Times called “his most impassioned speech all year” in urging his fellow senators to approve the treaty.
After losing the election in part because they alienated African-Americans, Latinos, gay men and lesbians, you would think that Republicans wouldn’t be looking for another group to infuriate.
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.
