Friday, October 3, 2014
A couple of weeks ago, out of the blue, I received an e-mail from a stranger about a book chapter I wrote over ten years ago about my prenatal diagnosis of my son’s Down Syndrome. Over the following days, I got a steady trickle of e-mails about the same piece, from people all over the world. I eventually traced it back to an edited version of the chapter printed on a website in Australia associated with the Sydney Daily Herald. They reprinted my piece in the wake of the furor over the Australian couple who hired a surrogate mother from Thailand to gestate twins for them, and refused to take the twin who was born with Down Syndrome (a beautiful boy named Gammy).
Most of the emails I got were from other mothers who had children with Down Syndrome, and most of the time we exchanged some variation of the sentiment: "Aren't we the lucky ones?" One of the moms followed up her initial e-mail with another that said, "My daughter with Down syndrome just got nominated for homecoming court!!! The world is definitely changing for the better.”
I certainly share her view that, with respect to day to day treatment of people with disabilities, the world (or at least the U.S.) is a better place now than it used to be. My work over this past year on this Disability Justice website confirmed that. The “Basic Legal Rights” section of the website tells the story of the evolution of our fundamental civil rights laws to recognize the right of people with developmental disabilities to live with dignity in our communities rather than in segregated institutions, to be free from unnecessary restraints, to be educated in our public schools, to work, and not to be subject to involuntary sterilization or servitude.
But it can be discouraging to continue to see, even today, examples of how those basic rights continue to be ignored for the most vulnerable among us. The website was funded from a cy pres fund established in connection with a settlement reached by the Minnesota Department of Human Services of a lawsuit brought in 2009 (!!) on behalf of three men in a state-run residential facility for people with developmental disabilities. The plaintiffs claimed that “as a means of behavior modification, coercion, discipline, convenience and retaliation, . . . staff restrained plaintiffs using law enforcement-type metal handcuffs and leg hobbles for conduct as benign as spitting, laughing or hand-washing.” The judge in this case has had to appoint a Court Monitor to oversee implementation of the Settlement Agreement, and has now twice extended court’s jurisdiction over the case, in the face of the State’s continued failure to live up to its agreement. In his most recent order extending jurisdiction for another two years, just this September, U.S. District Court Judge Donovan Frank wrote: “Multiple admonitions to the DHS have been insufficient to secure effective action by the DHS to close the significant gaps between its stated intentions and actions. Continued implementation delays can no longer be tolerated. More importantly, the dignity, quality of life, and best interests of every Class Member and similarly situated individuals with disabilities hinge on fulfillment of the promises made by Defendants at the fairness hearing in this matter.”
The entire Disability Justice website is peppered with links to recent news reports of the continued disregard for the dignity and legal rights of people with disabilities. The story of the group of men with cognitive disabilities locked up nights in a vermin-infested building, released in the day to eviscerate turkeys for $65 a month reads like something from a Victorian horror novel, rather than a New York Times report about a situation uncovered in 2009 in rural Iowa. Equally heart-breaking are some of the other stories linked in the pages outlining the continued abuse and exploitation of people with cognitive disabilities, in the links at the bottom of this page.
October is Down Syndrome Awareness Month. Let’s hope it brings more stories of beautiful children with Down Syndrome being nominated to homecoming courts, and fewer stories of beautiful children with Down Syndrome being rejected by their parents.
Wednesday, September 17, 2014
I just came across an interesting Call for Papers for the 15th Conference of International Consumer Law, to be held in Amsterdam next summer. The theme of the conferences is "Virtues and Consumer Law."
Proposals on the following possible topic areas are identified as being especially encouraged, presumably because they represent the "virtues" contemplated by the conference organizers. Setting aside some qualms I have about the very first one, this struck me as a very interesting list of 'virtues' in this particular field of law.
- Self-realization (in tourism, air travel or entertainment sector);
- Faith (in public and/or private enforcement of consumer law, in collective redress);
- Curiosity (in e-commerce, telecommunication sector or on innovation and consumer law);
- Compassion (towards vulnerable consumers, in medicine or in clinical trials);
- Frugality (in the banking sector or in financial contracts);
- Fairness (against unfair commercial practices and/or misleading advertising, against unfair contract terms, in protection of SMEs, through good faith and fair dealing);
- Trust (through data protection, on privacy and security issues, through product safety and/or product liability, from behavioural economics perspective);
- Forgiveness (through mediation or ADR);
- Self-development (through education, through services, through consumer sale contracts);
- Hope (against overindebtness, through clean-slate doctrine, by way of insurance).
Friday, June 13, 2014
I just got an email from the Jérôme LeJeune Foundation reminding me that today would have been the 88th birthday of Servant of God Jérôme LeJeune. In 1958, Dr. LeJeune discovered that Down syndrome is caused by an extra copy of the 21st chromosome; he later established the first specialized clinic for Down syndrome patients in Paris, and discovered the cause of cri-du-chat syndrome, 2 other trisomies, and helped us understand fragile X syndrome.
Dr. LeJeune was also passionately devoted to protecting the lives of the vulnerable subjects of his research. Among other things, he was first president of the Pontifical Academy for Life. His cause for sainthood is being postulated by the Abbey of Saint Wandrille in France.
In celebration of the life of the man some consider the patron saint of people with Down syndrome, I offer links to:
- a lovely "rare" interview with Dr. LeJeune in English (with an interesting account of the cost-benefit analysis of preserving the lives of people with Down Syndrome); and
- the website of what looks like a fantastic new movie featuring a young man with Down Syndrome, Produce . (Too bad it doesn't star Angelina Jolie... but I challenge you to watch the trailer and not try to find a local showing!)
Friday, May 30, 2014
... is my all-time favorite name for an advocacy group. Not Dead Yet is a "national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less."
Two of their recent activities deserve our attention.
1. Co-authoring an amicus brief with the Autistic Self Advocacy Network, in a case challenging the University of Wisconsin Hospital Center’s alleged practice of counseling families of people with developmental disabilities to withhold care for treatable but potentially life-threatening medical conditions, such as pneumonia. (Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics). The complaint alleges that:
one thirteen-year-old child died of pneumonia and one adult was denied care after University of Wisconsin Hospital physicians advised families to withdraw antibiotics, nutrition, and hydration. When the child's regular caregivers objected to withdrawing treatment, UWHC physicians allegedly encouraged the family to have him transferred to the University of Wisconsin Hospital, where he was taken off of antibiotics, nutrition, and hydration, and transferred to hospice care. He died the next day.
In both cases, Disability Rights Wisconsin claimed, doctors allegedly based their determinations on their patients’ supposedly low quality of life as individuals with disabilities, and acted without the approval of the hospital ethics committee.
2. A comment letter filed in New York State, expressing concern about some aspects of a New York initiative to reduce unnecessary hospitalizations of Medicaid patients:
The comment letter claims that the Conversation Project makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care. The letter quotes several excerpts from the Starter Kit on the Conversation Project website as examples of how living with disability is discussed in a negative way that could lead people to conclude that disability is a fate worse than death and, thus, execute advance directives that reflect that assumption.
Friday, March 21, 2014
Friday, February 21, 2014
Mary Jo Anderson has written a wonderful essay on Belgium's recent approval of a law permitting children to "choose" euthanasia, on the Crisis Magazine website, Mocking Compassion: Euthanasia Beyond Belgium. She points out something that should make it simple for Christians to cut through all the tortured reasoning about 'compassion' and 'choice' and 'suffering' that swirls around in euthanasia debates. She writes:
Christians can take their cue on the question from Malcolm Muggeridge: “Jesus healed the sick, raised Lazarus from the dead, gave back sanity to the deranged, but never did He practice, or include, killing as part of the mercy that occupied His heart. His true followers cannot but adopt the same attitude.”
Friday, February 7, 2014
The Murphy Institute is going to be busy this spring semester. Please join us in March for this one:
with keynote address by
Rev. Elizabeth A. Eaton
presiding bishop, Evangelical Lutheran Church in America
This two-day conference continues a conversation begun by feminist legal scholars and theologians, marked by the recent publication of Feminism, Law and Religion (Ashgate Press 2013, Failinger, Schiltz, and Stabile, eds), about the role that theology and religious law from diverse religions can play in the construction and critique of just law throughout the world.
PANELS AND WORKSHOP TOPICS:
Feminist Legal Theory- Religious and Secular Encounters
Emily Albrink Hartigan, St. Mary's University School of Law, Texas
Domestic Violence, Religion and Law
Deborah Cantrell, University of Colorado Law School
Feminist Readings of Theological Texts on Women's Concerns
Hina Azam, University of Texas
Reinterpreting Women's Roles and Women's Human Rights
Nimat Hafez Barazangi, Cornell University, New York
Women's Leadership Within Religious Communities
Sr. Sara Butler, University of St. Mary of the Lake Seminary in Mundelein, Illinois
Workshops on Emerging Scholarship in Feminism, Law, and Religion
These informal sessions provide an opportunity for scholars from varied disciplines to present their works-in-progress and are organized around these topics: Women's Leadership; Women and Human Rights Issues; Women, Religion, and U.S. politics; and Women in the Catholic Church: Emerging Issues.
Abigail Bartels, University of Notre Dame
Rev. Elizabeth Eaton
Monday, January 13, 2014
Like Cecelia (welcome!), I only recently had the chance to read through Evangelii Gaudium, and like her, I found it to be a 'treasure trove for reflection.' I must confess, though, to finding myself a tiny bit disappointed by the lack of mention of people with disabilities among Pope Francis's listing of the most vulnerable. It's clear from his actions in reaching out to people with disabilities in so many ways that they are among the populations to which he feels a special commitment, so the lack of mention of them in the Exhortation was something I noticed.
So today, I was delighted to see this report in Zenit of Pope Francis' private audience with Ileana Argentin, a member of the Italian parliament who is disabled and active in disability issues. The main topic of the meeting was an issue that I've recently become aware of as an emerging issue in the U.S. as well, "the importance of supporting the parents of seriously disabled people, who experience great anxiety about what may happen to their children after their own deaths, and the difficulties their siblings may encounter in assuming the responsibility of care."
In recent conversations with disability organizations in different parts of the country, I am noting a growing concern about our ability to care for the disabled children of the "Greatest Generation." (This is also an issue I'm facing personally from two directions, as my disabled son turned 18 and we think about his future, at the same time that my siblings and I are confronting the future care of our own brother with disabilities, still living at home with our aging mother.) Among the battles the Greatest Generation fought were the ones fought by brave and caring parents to keep their children with disabilities from being institutionalized, to get them into public schools, and to get jobs and other sorts of community support for their kids. But many of these parents did this work privately, without involving the (then-nonexistent) state support mechanisms. Many of these children did not move into group homes, and all of these children are now themselves adults, still living at home with aging parents who are dying or increasingly unable to care for themselves. Transitioning into any kind of a group care situation is difficult under any circumstances, but the difficulty is magnified when the transition is taking place in the midst of mourning the death of a parent. I heard one story of a disabled adult living at home whose mother died; it only came to the attention of the 'authorities' when members of their local church noticed they had stopped attending Mass.
I'm grateful to Pope Francis for bringing some attention to this emerging crisis in the care of some of the most vulnerable.
Thursday, January 9, 2014
The National Jurist's PreLaw magazine just published another law school ranking that ought to be of interest to MOJ readers, even if only to quibble about how impossible/illegitmate/inappropriate this is to be the subject of a 'ranking': "The best law schools for devout Catholics, Christians, Jews, Muslims, and Mormons." Of course, my initial position is that this MUST be credible/legitimate/appropriate, since UST Law is ranked #2 for Catholic Law Schools, and the article cites me (along with other friends of MOJ).
Friday, November 15, 2013
John Allen's latest column references (and translates, for those of us who don't speak Italian) a recent article on the front page of L'Osservatore Romano, titled "Women in the Church," in which Lucetta Scaraffia "a widely respected correspondent and columnist who often writes on women's issues", interviewed Maria Voce, president of the international Focolare movement. Allen writes:
As Scaraffia notes, the Focolare, founded by Italian laywoman Chiara Lubich, have made it a principle of their statutes that the president must be a woman. For that reason, and because the Focolare are among the largest movements, Scaraffia describes Voce as "the most eminent woman in the Catholic world."
Scaraffia argues that for too long, women were willing to accept a "subaltern" status in the church, but that today, "the situation is changing rapidly." She quotes with approval Voce's line that the church needs not only to appreciate what have been traditionally defined as "female gifts," such as the capacity to form loving relationships, but also that it must "seek out, and listen to, the thinking of women."
Three possible new roles for women emerge in the L'Osseravtore piece:
- A "not too small" entrance into "organisms of consultation, thought and decisions" in the church. Presumably, though Scaraffia doesn't quite say this out loud, this implies in part more women at decision-making levels in the Vatican.
- The creation of a consultative body to the pope similar to the Council of Cardinals but composed of both laywomen and men. Such a group, Voce says, "would make me enthusiastic."
- Allowing movements such as the Focolare to incardinate priests who have been ordained elsewhere. Up to now, Voce reports, permission has been denied -- perhaps, she says, because someone is afraid of putting a priest under the authority of a woman.
"The words of Maria Voce make clear that legitimate requests for true recognition of the feminine presence in the church don't come just from groups of radicals demanding women's ordination, but from authoritative and moderate figures," Scaraffia writes.
"Behind those requests," she adds, "is certainly the majority of women who belong to the church."