The Buie Knife

The Remarkable Eunice Kennedy Shriver, R.I.P.

Eunice Kennedy Shriver (1921-2009), who did so much for the mentally challenged, has been laid to rest. That was a beautiful eulogy by Maria Shriver. The "thank you's" from each of her grandchildren were  touching. And the remembrances of her at the wake, by Robert Kennedy Jr. and Ted Kennedy Jr. were quite funny, illustrating that she was "utterly devoid of vanity," passionate, intense, and a bit peculiar. If you haven't had a chance to visit www.eunicekennedyshriver.org, it's well worth perusing. As RFK Jr. noted, you don't have to be a public official to make a huge difference, and her contributions to social progress were equal to her brothers.

George Will: "Eunice was the most consequential Kennedy, at least as measured by the selfless enlargement of happiness. She lived a luminous life, perhaps because of the dark fate of the third oldest of Ted's siblings. Rosemary was mentally retarded. She was lobotomized and institutionalized. This grotesque response by Rosemary's father to her handicap became a blessing for subsequent mentally disabled Americans, whose afflictions summoned Eunice to her vocation of amelioration."

More on Eunice Kennedy Shriver, Rosemary, and the Kennedys' Exemplary Leadership on Mental Retardation.

Newsweek.com Publishes 'My Turn' Piece on Late-Term Abortion

"The Case For Legal Late-Term Abortions," by Jim Buie, Newsweek.com "Abortion wasn't an option for my parents, but raising my severely retarded brother nearly destroyed our family." It is sparking interesting comments.

I wrote the piece not so much to advocate for late-term abortion but because I think the public debate has lacked realism. Few people seem to understand the personal and societal price to be paid when choice -- even late-term choice -- is eliminated. In the United States, only Kansas allows doctors to abort fetuses after 20 weeks. If you believe late-term abortion should be illegal, then it seems to me you must also advocate for GENEROUS public resources for institutional care, and for adoption. The societal trend is just the opposite: institutional care, especially in times of tight state budgets, has been slashed (in some states, almost eliminated), and adoption can be quite expensive. 

I was inspired to write this piece after reading a series of first-hand accounts of late-term abortion on Andrew Sullivan's blog. Kate Dailey of Newsweek's Human Condition Blog has a good round-up, "Andrew Sullivan's Brave and Brilliant Abortion Blogging," with links to some of the more moving posts. Sullivan, a Catholic, starts out by saying he cannot possibly support late-term abortion, but as he peruses his readers' stories -- pro and con -- his views evolve. He reports on a couple whose daughter at 18 weeks' gestation was diagnosed with devastating heart defects and less than a 20 percent chance of survival. She died three days after birth. Shouldn't this couple have had the right to consider abortion, a sister asks. He tells the story of a Catholic couple (and their priest) who watched their newborn infant suffer so much from surgery before she died that they concluded that earlier termination would have been far more humane.

Sullivan also links to a powerful collection of stories, "A Heartbreaking Choice," from parents who made the choice to end a much-wanted pregnancy due to severe or lethal birth defects. A number of them were under the care of the late Dr. George Tiller. It is impossible to read the stories and the testimonials about Dr. Tiller and not be touched and moved by them.

I was raised to believe that my brother's life had a positive impact far beyond his own tragic circumstances. I articulated those beliefs in my eulogy to him at his memorial service in 2002. His life was a testimonial, I said, "to the concept that we, none of us, in this life ever fully knows the impact we have on other people." Every life, even that of a severely retarded individual, makes more of a difference, I said, than we any of us realizes.

As the parent of an adopted son, I also know that there are thousands of couples yearning to be parents and waiting for years to adopt. So it makes little sense to me that millions of abortions are performed if many babies could easily be adopted. It's difficult for potential adoptive parents to read stories like this one, about a self-described "selfish and sick 21-year-old" whose actions in pressuring his girl friend to have an abortion may have prevented others from becoming the parents they wanted to be. 

At the same time, it seems LISTENING, respecting personal experience and PERSUASION are far more effective tools in discussing abortion than dogmatic, legalistic and judgmental pronouncements. As Kate Dailey writes on her Newsweek blog, "we need more thinking and rethinking, more sharing of extraordinary accounts, and more discourse."

For readers interested in more details on my own family story, my sister, Ann Loomis, wrote a moving piece about her visit to our brother's institution, "Jon's Place." My mother, Lillian Secrest Buie, wrote several things about Jonjon, and her brother (my uncle) had some insightful things to say recently.

Drill Deeper:

• "The Case For Legal Late-Term Abortions," by Jim Buie, Newsweek.com
• My eulogy to my brother at his memorial service in 2002
• My sister Ann's account of visiting our brother at the institution where he lived for most of his life. Jon's Place.
• 1955: Lil Buie's letter to her mother after speaking publicly for the first time about her experience as mother of a severely retarded child
• 1979: Lil Buie's journal entry. "Thankfully, the scars of Jonjon's babyhood have healed, but I could never forget..."
• My uncle, Mac Secrest, recently made some poignant observations about the family's situation, how they learned to cope and detach.

In addition, for people with an open mind on this issue, trying to rethink their own position, I recommend reading:

• The website, "A Heartbreaking Choice," stories from parents who made the choice to end a much-wanted pregnancy due to severe or lethal birth defects. Especially informative are stories from patients under the care of the late Kansas Dr. George Tiller.
• The Upside of Downs: Support, Education, Advocacy, Community
• "The Worth of Isaiah." Debbie Joslin of Women for Faith and Family describes how she was advised to consider abortion because her severely disabled child had no chance of living beyond a few days of birth. She chose to give birth anyway, believing that he would have a "death with dignity" in his parents' arms instead of a shot that wished him away.
• Newsweek's "Human Condition" blog: excerpts from Andrew Sullivan's Brave and Brilliant Abortion Blogging
• Patients Pay Tribute to a Murdered Doctor (NYTIMES)

Sullivan's collection of late-term abortion articles:

1. It's So Personal
2. It's So Personal, Ctd 
3. The Catholic Mother
4. The Trauma 
5. A Doctor's View (reader reaction)
6. A Target Of Terror 
7. The Regret 
8. Not Knowing For Sure 
9. When Principle Meets Reality 
10. Serial Abortions (reader reaction)
11. Preparing For The Worst 
12. An Unforgiving Family (reader reaction)
13. The Guilt
14. Holding On
15. The Gay Fathers
16. What Guilt?
17. Ectopic "Miscarriage"
18. Anencephaly
19. A Life Saved By Choice
20. What Do You Mean, Viable?
21. The Other Side Of The Abortion Experience

Sarah Palin's 'Moment of Doubt' -- She Considered Abortion -- Raises Deeper Questions. Coverage Ignores Advancements

Sarah Palin, speaking to a group in Indiana, acknowledged that she was tempted to have an abortion when she first learned that she was pregnant at 44 with a Down Syndrome child:

Thankfully, she said, her doubts and her temptation were only short-lived. One must respect her decision, and can even admire it, though at this stage she doesn't necessarily know what she's in for. But she did EXPERIENCE a sense that she HAD A CHOICE in the matter.

I Had a Brother With Down Syndrome. Rush Limbaugh's Promotion of Sarah Palin For Embracing Families With Down Syndrome Kids Disturbs Me

"Bet Ya Didn't Hear This on NBC" is an email circulating around the Internet from pro-lifers, as well as a video on YouTube.com. On the surface it is a touching story, transcript from the Rush Limbaugh radio show. A father called in to say he and his wife -- parents of a child with Down Syndrome -- at a Palin-McCain rally, held up a sign, "We Love Kids With Down Syndrome" and were spontaneously invited to meet privately with the candidates because Sarah and John were so moved and touched by the sign. 

The email was forwarded to me by a conservative acquaintance with these words. "Forget Limbaugh….it is the story that is important not to whom it was told. I can't, in my wildest dreams, even begin to imagine Obama, Biden, even Hillary Clinton taking time out of a busy day to talk to and have a photo taken with mere commoners—especially a photo that they knew was never going to make the papers or the nightly news."

I wonder if it's a coincidence that Fox's Sean Hannity broadcast a caller telling the same story, and National Review recounted it as well? Or, as former radio host Taylor Marsh suggests, the story "has evolved into a big PR event, not by accident. Manufacturing these events is what the right-wing does best. Using a Down Syndrome child to help their candidate get votes is just their latest low."

Sister's Perspective on Severely Down Syndrome Brother

My sister, Ann Loomis, wrote a moving piece about her visit to my brother's institution, posted on my mother's blog.

Aborting the Disabled: Debate Should Be Framed Outside Rigid Ideologies

My family's mixed feelings and mixed experience over how to respond to a severely mentally retarded relative are stirred up in "The Debate No One Wants To Have: Prenatal testing is making your right to abort a disabled child more like 'your duty' to abort a disabled child," an article in The Washington Post by Patricia Bauer, a former Post reporter and bureau chief. My brother (1949-2002), was severely mentally retarded. With prenatal diagnosis of Downs Syndrome now leading to abortion in as many as 80 percent of pregnancies, there does need to be a debate, more education, more thought and reflection over what we as a society are doing. But I hope the debate will not fall into the predictable, kneejerk pro-choice vs. pro-life man-your-battle stations debate which sheds far more heat than light. I do not believe that families that actually face such decisions fall rigidly into pro-choice or pro-life categories or ideologies. There is not ONE ANSWER to this question for all families. Promisingly, in Congress, we have pro-choice Senator Edward Kennedy and pro-life Senator Sam Brownback seeking to strengthen "the culture of life" through the Prenatally Diagnosed Conditions Awareness Act.

• My uncle has written about the trauma my brother's severe mental retardation had on our family in the early years.
• My mother has written about the scars left by my brother's condition, and the good that came of his life, in her view.
• Mentally Retarded Children Are Joy, Blessing to Some Families
• Euthanizing the Severely Disabled: Positive or Negative Medical Trend?
• 80% of Down Syndrome Fetuses Are Likely Aborted; Kennedy & Brownback Seek to Strengthen 'Culture of Life'   

Mentally Retarded Children Are Joy, Blessing to Some Families

On this blog we've discussed the impact of mental retardation on a family, pro and con (including my own), the past trends toward lobotomy and institutionalization, group homes and half-way houses, the current trend toward euthanasia: 80% of Down Syndrome fetuses are likely to be aborted today. Down Syndrome is actually quite common -- one out of every 1,000 babies are likely to suffer from it. Senators Kennedy and Brownback have proposed legislation to help families make more informed choices.

Obviously, this is a complex topic. No one choice is right for every family. "A Home Built on a Child's Needs: Norton's Private Side Shelters Her Daughter" by Sue Ann Pressley in The Washington Post is a touching story of one family's very positive experience with a mentally retarded daughter:

"Why would I cry? I was absorbed in how beautiful this child was. Here was a baby who smiled incessantly. I was completely taken with her....And I never for a moment said, 'Why me?' In fact, the exact opposite occurred to me, that as chances go around, it made some sense in the cosmic sense of how the world works, that it would be our turn to have this child." -- Eleanor Holmes Norton, the eight-term D.C. delegate to Congress, speaking of her oldest child and only daughter, who has Down syndrome. 

Euthanizing the Severely Disabled: Positive or Negative Medical Trend?

I frankly am not surprised that 80% of fetusus with severe disabilities are aborted, as two senators affirm and a Harvard study reports (below). But I must admit that it raises questions:

• Are we silently and secretly trying to create a society devoid of children or people with severe disabilities?
• Do parents have enough information when they decide to abort fetuses that have a high probability of severe disability?
• Are too many families today deprived of the "privilege" of a severely developmentally disabled child and of trying to find a meaning or make a meaning out of the experience?
• Where should the line between life and death be drawn? How do you define severe disability?

My brother, severely mentally retarded, was institutionalized from age four until his death in his early fifties. My uncle, Mac Secrest, recently wrote about this traumatic experience for my family in his autobiography, "Curses and Blessings."  See "Plotting to Euthanize His Nephew."

Since I wasn't yet born, I can perhaps discuss the experience with some detachment.

80% of Down Syndrome Fetuses Are Likely Aborted; Kennedy & Brownback Seek to Strengthen 'Culture of Life'

More than 80 percent of fetuses who test positive for Down Syndrome or severe developmental disabilities are aborted, Senator Sam Brownback (R-Kansas) says, and parents aren't getting the information they need to make informed decisions.

"For some conditions that can be detected in the womb, we are aborting 80 percent or more of the babies who test positive," Brownback said in a written release March 16. "The effect of this sort of 'weeding out' is creating new eugenics, a form of systematic, disability based discrimination."

A pro-choice liberal Democrat, Senator Ted Kennedy (D-MA), who had a retarded sister, Rosemary, has co-sponsored legislation with Brownback titled the Prenatally Diagnosed Conditions Awareness Act.  The bill would provide $25 million in federal funding so that women who receive prenatal test results for conditions like Down syndrome get accurate, up-to-date information and referrals to support groups.

Standing with a Massachusetts mother who has a child with Down Syndrome, Kennedy said, according to his press office, ""One of the hardest moments in the life of an expectant mother is when she receives news that she is going to have a child with special needs. Access to the best support and information about the condition, and the quality of life for a child born with that condition, can make all the difference to a woman trying to make an informed and difficult decision. I believe this kind of support is a vital element to strengthening a true culture of life in America."

The legislation calls on healthcare providers who announce a positive test to pregnant women to refer them to support services and to provide them with the latest information on the life expectancy of children with the diagnosed condition, their mental and physical development, and treatment options. It also  funds reports on healthcare services for children and support opportunities for their families.

The legislation was inspired in part by a paper written by Harvard Medical School graduate student Brian Skotko and published in a medical journal. Skotko found that obstetricians and genetic counselors provide too little information when it comes to delivering a prenatal diagnosis of Down syndrome to pregnant women. Mothers reported that doctors did not tell them about the positive potential of people with Down syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups.

Drill deeper:

• Student's Study Sponsors Bipartisan Legislation. (Harvard Gazette)
• Pro-Con Discussion: Rosemary and the Kennedys' Exemplary Leadership on Mental Retardation (Buie Blog -- 29 comments and counting).
• 'I'd Rather Have a Bottle in Front of Me Than a Frontal Lobotomy' (Buie Blog -- Discussion of Rosemary Kennedy's Lobotomy and the trend toward lobotomies around the world.)
• Brownback statement on new legislation.
• Kennedy statement on new legislation, with details on Harvard study.
• National Association for Down Syndrome discussion board

Eunice Kennedy Shriver, Rosemary and the Kennedys' Exemplary Leadership on Mental Retardation

A "conservative" with whom I correspond wrote me the following:

"Nice people....these Kennedys.   What a surprise. JFK and Ted's sister Rose just died at the age of 86.  Her family had her reduced to an infantile state when she was 23 by having her lobotomized.  Now did they do it because she was a danger to herself or others?  Nope--they did it because she was mentally retarded and they were afraid she would "embarrass" the family.    Wow.  Wonder what they thought she would do to embarrass them?"

The intensity of my response surprised me. I fired back: "You obviously don't know a g.d. thing about the history of mental retardation or mental illness in this country."  As someone with a severely retarded brother, I find scurrilous the use of Rosemary's story as a means to score political points and to attack the character of the Kennedy family. I recall the letter my mother wrote, shortly after President Kennedy was assassinated, remembering how moved my parents were by the Kennedy family's crusade for the mentally retarded back in the 1950s, when few dared speak of the "shame" of mental retardation. To use Rosemary as a political football to paint the Kennedy family in a dark light is far beyond the pale. Of all the negative things that can be legitimately said about aspects of the Kennedys' public or private lives, their handling of Rosemary's retardation, in the context of the times in which they have lived, has been nothing short of exemplary.

Joseph Kennedy's decision to permit a lobotomy of Rosemary was made upon the recommendation of medical professionals. According to Kennedy biographer Doris Kearns Goodwin, a lobotomy -- a brain operation -- was regarded as a miracle treatment when JPK ordered it. "It was an obvious solution" to the frustrations Rosemary experienced in trying to find a place for herself in a hard-driving family," Goodwin wrote in The Washington Post. According to Goodwin's account, "something went terribly wrong," and Rosemary emerged "far worse" than ever.

"Doctors told Joseph Kennedy that a lobotomy, a medical procedure in which the frontal lobes of a patient's brain are scraped away, would help his daughter and calm her mood swings that the family found difficult to handle at home," writes Lolita Baldor of the Associated Press. "Psychosurgery was in its infancy at the time, and only a few hundred lobotomies had been performed. The procedure was believed to be a way to relieve serious mental disorders."

At a time when shame and stigma about mental retardation and mental illness were the norm, the Kennedys had the courage to take their story public. In 1946, they established the Joseph P. Kennedy Jr. Foundation to improve the way society deals with people who have developmental disabilities. They generously supported the ARC (formerly, the National Association of Retarded Citizens), a fledgling movement of families that grew into a powerful international force.

Rosemary's condition first became national news after John Kennedy was elected President. The National Association for Retarded Children mentioned in a newsletter that the president-elect "has a mentally retarded sister who is in an institution in Wisconsin." President Kennedy, his siblings, and parents seized on this as a "teachable moment" for the nation. He appointed an iminent panel on mental retardation that sought an “intensive search for solutions” to the problems experienced by people with mental retardation. The panel made 112 recommendations, many of which have been implemented over time. In 1963, lobbied by his sister Eunice, President Kennedy gave the first-ever "special message" to Congress on mental illness and mental retardation, calling for a "wholly new national approach" -- a shift from warehousing "them" in institutions to integrating people with disabilities into communities. In October 1963, he signed a law to do just that.

Eunice Kennedy Shriver was the point person on the issue, pushing her brother all along to make mental retardation an issue of public concern. She wrote articles about the family experience. She founded the Special Olympics. President Reagan recognized her contribution to the mentally retarded by awarding her the Medal of Freedom in 1984. A beautiful website, EuniceKennedyShriver.org, documents her family's enormous contributions to social progress specifically for the mentally retarded and in general for the disabled. Edward Shorter, a distinguished historian of medicine, has written an entire book, "The Kennedy Family and the History of Mental Retardation," detailing the family's passion for this topic.

Yes, some of the Kennedys' devotion to these issues may have been sparked by Joe Kennedy's tragic decision and lingering guilt. But at least he didn't wallow in his guilt -- some great good has come out of his mistake. As the conservative columnist George Will has written:

"Eunice was the most consequential Kennedy, at least as measured by the selfless enlargement of happiness. She lived a luminous life, perhaps because of the dark fate of the third oldest of Ted's siblings. Rosemary was mentally retarded. She was lobotomized and institutionalized. This grotesque response by Rosemary's father to her handicap became a blessing for subsequent mentally disabled Americans, whose afflictions summoned Eunice to her vocation of amelioration."

The Kennedy family's commitment to improving the lives of mentally retarded people has extended beyond Rosemary's generation. Eunice's son Anthony founded Best Buddies. Ted Kennedy's daughter, Kara Kennedy Allen, works for Very Special Arts,  in which people with disabilities learn from participating in the arts.

I found Senator Kennedy's statement at the death of his sister Rosemary quite touching.

I wrote about my own family's experience with my mentally retarded brother for Newsweek magazine,  trusting that the overall public will make more of an effort to understand and be compassionate than my correspondent was toward the Kennedys in his email to me.

Drill Deeper:

• If you have an open mind on this topic, check out www.eunicekennedyshriver.org and the other links above. I particularly recommend the video index, full of inspiring, remarkable stories, especially the short film, "Life in the Shadows" about what John Kennedy did for the mentally retarded: http://www.eunicekennedyshriver.org/videos/video/23. 
• More on this blog about mental retardation.