Tuesday, June 16, 2015
Related to Rick's recent post about the advertising in Spain for a prenatal test for Down Syndrome called "Tranquility", here's an equally frightening essay by Renate Lindeman, a spokesperson for the Dutch parent group Downpride.
Denmark was the first European country to introduce routine screening for Down syndrome in 2006 as a public health-care program. France, Switzerland and other European countries soon followed. The unspoken but obvious message is that Down syndrome is something so unworthy that we would not want to wish it for our children or society. With the level of screening among pregnant Danish women as high as 90 percent, the Copenhagen Post reported in 2011 that Denmark “could be a country without a single citizen with Down syndrome in the not too distant future.”
... like other European governments, the Netherlands is currently considering permanently including the NIPT, primarily aimed at Down syndrome, in its prenatal screening program. An American-European-Canadian study on DNA screening for Down syndrome was published in the New England Journal of Medicine this year. Dick Oepkes, chairman of the Dutch NIPT consortium, called results “positive,” stating in a recent interview: “Surveys show women experience waiting for test results arduous. Offering the DNA test as a first step will allow women who consider terminating the pregnancy to make their choice before they have felt the fetus move.”
Lindeman has two children with Down Syndrome. She gets right to the crux of what's really at stake behind the rhetoric of the push for such testing, including what makes the "Tranquility" advertising approach that Rick found so horrifying:
Screening and selection say nothing about the inherent worth of people with Down syndrome. They say everything about the elevation of the capacity for economic achievement above other human traits. My children are fascinating, demanding, delightful, present, annoying, dependent, loving, cuddly, different, unpredictable and completely human, just like other children. They are not a mistake, a burden or a reflection of my “personal choice,” but an integral part of society.
If we allow our governments to set up health programs that result in the systematic elimination of a group of people quite happy being themselves, under the false pretense of women’s rights, than that is a personal choice — one we have to face honestly.
Thursday, June 11, 2015
My colleagues at the John Ryan Institute for Catholic Social Thought, Michael J. Naughton, Jeanne G. Buckeye, Kenneth E. Goodpaster and T. Dean Maines, have written a book applying the principle of subsidiarity in a concrete context. This might be a good resource for those teaching or working with Catholic social teachings. Their description:
Respect in Action: Applying Subsidiarity in Business is a book addressed to business leaders committed to implementing sustainable organizational changes consistent with the key principles of Catholic Social Thought. It is directed to managers whose decisions and purposes influence not only the economy, but the lives of men and women around the world who work for them. Subsidiarity invites organizations to pursue the common good through practices that take the integral development of the human person at least as seriously as economic prosperity. We believe this book has something important to say to practitioners as well as to business faculty and students.
You can download it (for free) as a PDF or e-book here.
Friday, June 5, 2015
Monday, May 18, 2015
With Minnesota's Governor threatening to veto the bipartisan education funding bill later today, sending the legislature into a special session this summer, I'm happy to report that something positive came out of this past session. On Monday, Governor Dayton signed the Prenatal Trisomy Diagnosis Awareness Act. It passed unanimously in the House and 58-1 in the Senate. That doesn't happen much anymore!
Effective August 1st, health care practitioners in Minnesota who perform genetic tests on pregnant women for Patua syndrome (trisomy 13), Edwards syndrome (trisomy 18), or Downs syndrome (trisomy 21), will have to provide specific information if the results are positive. The information has to include "up-to-date and evidence-based information about the trisomy conditions that has been reviewed by medical experts and national trisomy organizations", including expected "physical, developmental, educational, and psychosocial outcomes", life expectancy, and contact information for nonprofit organizations that provide information and support services for trisomy conditions.
You'd think such information should be routinely given, but 20 years ago when I received a diagnosis of Trisomy 21 for my son, it certainly was not part of anything I got from our genetic counselor or doctor; anectodal evidence suggests things aren't much different now.
According to my friends (and a former student) at the Minnesota Catholic Conference, some of the key factors in getting passed were the diverse coalition of supporters, bipartisan authorship, pepole with disabilities serving as the principal public advocates, and message discipline (this is an information bill--and who is against more information? Well, based on the sole vote against this, apparently Senator Katie Sieben.)
Though similar bills have been passed in six other states [Massachusetts (2012), Kentucky (2013), Pennsylvania (2014), Maryland (2014), Louisiana (2014) Delaware (2014), and Ohio (2014)] Minnesota's is the first to include Trisomy 13 and 18. Anyone who wants information on this bill or the background of its passage, feel free to contact Jason Adkins, Executive Director of the Minnesota Catholic Conference.
Thursday, May 14, 2015
Update to my recent post mentioning the prosecution of a the right-to-die group Final Exit Network Inc. here in Minnesota: they were convicted today assisting in the suicide of a woman who took her life in 2007 after years of suffering with chronic pain; it's the first time they've been found guilty of this charge. They do, of course, intend to appeal for violation of the First Amendment.
Wednesday, May 13, 2015
Wednesday, May 6, 2015
There has been a lot of quiet activity around the country around assisted suicide legislation. In Minnesota this past year, the "Minnesota Compassionate Care Act" was introduced (SF 1880) and given its first hearing in a committee; it is supposed to be the subject of "listening sessions" around the state over the summer. Similar legislation is being considered (and mostly rejected, so far) in many other states. Here's a helpful roundup of initiatives (complete with color-coded map) from "Death with Dignity National Center."
For a vivid description of some of the legislative tactics involved in past attempts to pass such legislation (California in 1999), see this Weekly Standard account of the reaction to an opposition coalition composed of "Disability-rights activists in wheel-chairs marched in solidarity with white medical professionals, alongside African-American clergy and advocates for the poor, next to Latino migrant farm workers and Catholics praying the rosary."
This Monday, a trial began in Dakota County, MN, on charges against Final Exit Network Inc, a Georgia nonprofit that provides assistance to people wanting to commit suicide, and its medical director. According to this newspaper story about the trial:
When an applicant meets the Final Exit Network’s criteria — which includes being mentally competent and suffering from “intolerable medical circumstances” like cancer or Lou Gehrig’s disease — the network assigns volunteer “Exit Guides” who provide information on ending one’s own life.
The network’s preferred method is helium asphyxiation using a plastic bag as a mask. Often, two Final Exit Network members are present and remove items the person used to take their life.
The article also reports that, so far, attempts to prosecute Final Exit Network activists in Georgia and Arizona have failed; their director's medical license was revoked in Maryland last year, for allegedly assisting in six suicides.
If you need any inspiration for speaking up against laws that would legalize the work of groups like Final Exit Network, take a look at this testimony by Stephen Mendelsohn in opposition to the Connecticut bill, and this page from my favorite disability activitist group, Not Dead Yet. I love the beginning of Mendelsohn's testimony:
Movements are known by their mottoes. The civil rights movement sang "We Shall Overcome." In the disability community, we have our own motto: "Nothing About Us Without Us." We. Us. Interdependence. Community.
The "right-to-die" movement, led by Compassion & Choices, has its motto. It can be seen on their green stickers, multiple Facebook pages, billboards and earlier this year in the Connecticut Capitol concourse: "My Life. My Death. My Choice." Me. Myself. I. The difference is revealing.
Wednesday, April 29, 2015
If you're going to be in NYC on May 13, you might want to check out this exhibit of photography by Letizia Morinia, a 23 year old woman who, in the words of the promotional material, "happens to have Down Syndrome." It's sponsored by Communion & Liberation's Crossroads Cultural Center.
Here's a sample:
Here's the description of her work, an essay that is as beautiful as the photograph above:
What is striking about Letizia Morini’s art is the absolute value of the instant: the instant that would be inevitably fleeting if not for her camera caring enough to grab it, to “infinitize” it (in Montale’s words).
In the instant, her care, her attention move to what is small, seemingly insignificant; that which we, too busy hastily living out our “rabid days devoid of acts of love” (to quote the Italian singer/songwriter De Farbizio De Andrè), would have never deemed worthy not even of a glance. Letizia instead forces us to stop, to ‘alter time’; she uses her camera to enhance reality, to ‘reveal’ it.
Hers is a wise photography, shutter clicks never improvised but instead the fruit of a dogged passion for the thing in and of itself, a passion which becomes contagious, which by osmosis transmits itself to the eyes of the observer, wounding the heart.
Everything becomes big, absolute: A tin case of sardines is transformed into a lunar landscape; an insignificant concrete block becomes a sort of Aztec pyramid; a disarming piece of paper is a metaphor for our fragility, ruffled by uneasiness. Everything— all the possible feelings which comprise the human palette—the heart wrenching sweetness which seeps out of her portraits of children, the ferocity of a muzzle or of butchered animal carcasses, the dreamy gaze at the sky or the flowers.
Everything, Letizia tells us, is keeping a secret; everything can reveal something. Photography represents that very possibility. “You realize that in silences / things yield and almost betray / their ultimate secrets. / At times, one half expects / to discover an error in Nature, / the still point of reality, / the missing link that will not hold, / the thread we cannot untangle / in order to get at the truth.” (Eugenio Montale, The Lemon Trees).
Letizia’s pictures, however, impose a condition to those who truly want to know them: abandon. She wants to take us by the hand and help us discover that everything can be for us, forever.
Sunday, April 26, 2015
Rick's tour de force in summarizing the presentations at Friday's Scarpa Conference at Villanova conveys a sense of why we are all so grateful to Patrick Brennan for bringing us together. However, he stopped blogging too soon. The most dramatic event was the dinner afterwards, when Patrick and John Breen almost came to fisticuffs over whether Evelyn Waugh's Brideshead Revisted, or Graham Greene's The Power and the Glory, is the quintessential Catholic novel. (Susan Stabile tried to broker a compromise with Dostoevsky's Brothers Karamozov, but she didn't make much headway.)
So we're suggesting a virtual summer book club. Some of us may read, or re-read, (or watch the movie versions of) any or all of those three books over the summer, and post our thoughts. The winner (if one emerges) will get to hear Michael Scaperlanda's defense of Godfather III as the best of the Godfather movies......
Friday, March 20, 2015