Fully Alive
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“the validity of the finality”: The Arc website, www.thearc.org/page.aspx?pid=2339. The site adds: “This article was written for, and copyrighted by, the Encyclopedia Americana, Chicago and New York, 1952 edition. It is reproduced with the permission of the publishers for members of the National Association of Parents and Friends of Mentally Retarded Children.”
I can only imagine the anger: The 1971 short film Who Should Survive? by Guggenheim Productions chronicles the death of a baby with Down syndrome by starvation at Johns Hopkins Hospital. The DVD is available from Guggenheim Productions, 3121 South Street NW, Washington, DC 20007, or online at www.gpifilms.com/orders.html (accessed July 7, 2014).
“I have seen sights”: Eunice Kennedy Shriver, “The Sun Has Burst Through,” Parade, February 2, 1964, cited in Edward Shorter, The Kennedy Family and the Story of Mental Retardation (Philadelphia: Temple University Press, 2000), 75.
Feldman was assigned to smooth over: Myer Feldman, recorded interview by John F. Stewart, September 21, 1968, PDF pages 6–7, 14, John F. Kennedy Library Oral History Program. See also Nasaw, The Patriarch, 761; and Laurence Leamer, The Kennedy Women: The Saga of an American Family (New York: Villard Books, 1994), 528–31.
“There aren’t any major problems”: Shorter, The Kennedy Family and the Story of Mental Retardation, 80.
“Call Mike Feldman”: Edward M. Kennedy, The Fruitful Bough (Halliday, 1965), 223, quoted in Shorter, The Kennedy Family and the Story of Mental Retardation, 85.
“Anything that is in the power”: Leonard Mayo, recorded interview by John F. Stewart, April 30, 1968, page 7, John F. Kennedy Library Oral History Program.
“This is a matter which I think”: Remarks of John F. Kennedy to the President’s Panel on Mental Retardation, released by the White House Press Office on October 17, 1961. Papers of John F. Kennedy: Presidential Papers: President’s Office Files: Mental Retardation, Digital Identifier JFKPOF-102-008, John F. Kennedy Presidential Library and Museum, available at www.jfklibrary.org/Asset-Viewer/Archives/JFKPOF-102-008.aspx (accessed May 27, 2014).
“It’s interesting to”: Leonard Mayo, recorded interview, 3.
The president himself told Mayo: Ibid., 14.
“went for it a hundred per cent”: Ibid., 6.
“Why not invite them”: Ibid.
“I’m going up and see”: Ibid.
No one knew for sure: During economically prosperous periods of American history, such as the 1920s, people with intellectual disabilities had often been “paroled” from institutions and allowed to hold paying jobs in the community. But during economic downturns they had just as often been casualties, warehoused in institutions because there were not enough jobs available even for “normal” citizens—even though it was during those same periods that conditions at the underfunded institutions tended to deteriorate. See Peter L. Tyor and Leland V. Bell, Caring for the Retarded in America: A History (Westport, CT: Greenwood Press, 1984), 123, 136; and James W. Trent, Inventing the Feeble Mind (Berkeley: University of California Press, 1995), 275.
“The marvelous thing is”: Sargent Shriver in an interview with Peggy Dillon and John C. Rumm, Special Olympics Office, Washington, DC, November 30, 1999.
Séguin, a nineteenth-century French physician: See Trent, Inventing the Feeble Mind, chapter 2, “Edward Seguin and the Irony of Physiological Education”: “To carry out physical exercises, Seguin employed various types of gymnastic equipment, often devising such equipment to meet the needs of a particular pupil. Some children benefited from dumbbells, rope ladders, swings, balancing bars, and the like. Other children, capable but unwilling, required the continual guidance and motivation from a teacher even to stand on their own. Whether complex or simple, however, Seguin insisted that exercises meet the individual needs of the pupil and be undertaken only after careful planning based on experimentation” (47).
the brain thrives on exercise: See, for example, the CDC paper “The Association Between School-Based Physical Activity, Including Physical Education, and Academic Performance” (2010), available at www.cdc.gov/healthyyouth/health_and_academics/pdf/pa-pe_paper.pdf (accessed May 28, 2014).
“My camper got off the bus”: Jim Turner, personal conversation with the author, summer 2013.
“that mentally retarded children can be”: Eunice Kennedy Shriver, “Rebel with a Cause,” essay from the Special Olympics files dated to the 1960s.
“As far as I was concerned”: Leonard Mayo, recorded interview, 25.
Her influence, Mayo recalled: Ibid., 13.
My mother was adamant: See D. Spitalnik, The President’s Panel and the Public Policy Contributions of Eunice Kennedy Shriver (New Brunswick, NJ: The Elizabeth M. Boggs Center on Developmental Disabilities), 10.
“I just read the draft”: Leonard Mayo, recorded interview, 45.
“You know, I got a lesson”: Ibid.
“If you can’t come now”: Ibid., 28.
“What have we learned”: Ibid., 33.
“I don’t know any member”: Ibid., 12.
“You can see what would have happened”: Ibid., 33.
“The Food and Drug Administration”: A Proposed Program for National Action to Combat Mental Retardation, report of the President’s Panel on Mental Retardation, October 16, 1962, Papers of John F. Kennedy: Presidential Papers: President’s Office Files: Mental Retardation, Digital Identifier JFKPOF-094-022, John F. Kennedy Presidential Library and Museum, page 81.
in Baltimore, for example: Ibid., 71–72.
“Many city hospitals now charge”: Ibid., 73.
“[Rosemary] was a beautiful child”: Eunice Kennedy Shriver, “Hope for Retarded Children,” The Saturday Evening Post, September 22, 1962.
A mere half century after the chilling: Trent, Inventing the Feeble Mind, 249–55.
“Dear Jack”: Letter from Eunice Kennedy Shriver to John F. Kennedy, June 22, 1962, Papers of John F. Kennedy: Presidential Papers: President’s Office Files. Series Name: Special Correspondence. Series Number: 02. Digital identifier JFKPOF-032-016, John F. Kennedy Presidential Library and Museum, available at www.jfklibrary.org/Asset-Viewer/Archives/JFKPOF-032-016.aspx (accessed May 27, 2014).
The population of these institutions: David L. Braddock and Susan L. Parish, “An Institutional History of Disability,” in Disability at the Dawn of the 21st Century and the State of the States, ed. Braddock (Washington, DC: American Association on Mental Retardation, 2002), 35.
6. DAYBREAK
Anne Burke, however, thought: The information that follows is taken from a series of personal conversations between Burke and the author, 2013.
Dan Shannon, an accountant: Monogram Club profile, University of Notre Dame website, www.und.com/sports/monogramclub/mtt/shannon_dan00.html (accessed April 23, 2014).
My mother had pushed research: The monograph is Robert J. Francis and G. Lawrence Rarick, Motor Characteristics of the Mentally Retarded, Cooperative Research Monograph No. 1 (Washington, DC: Office of Education, 1960).
Head Start, the nation’s first: Edward Zigler and Susan Muenchow, Head Start: The Inside Story of America’s Most Successful Educational Experiment (New York: Basic Books, 1992), 25–28.
What Gray found surprised her: Zigler and Muenchow, Head Start, 4–6; Susan W. Gray and Rupert A. Klaus, The Early Training Project for Disadvantaged Children: A Report After Five Years (Monographs of the Society for Research in Child Development, vol. 33, no. 4, 1968), 52–53.
“Sarge and I went to visit”: Unpublished notes of Eunice Kennedy Shriver, Kennedy Foundation archives.
“a new enthusiasm”: Address of Pope John XXIII, October 11, 1962, in The Encyclicals and Other Messages of John XXIII (Washington, DC: TPS Press, 1964), 423–35.
“at last possible to be properly human”: Remarks of Archbishop of Canterbury Rowan Williams to the Synod of Bishops in Rome regarding the new evangelization at the invitation of Pope Benedict XVI, available at http://rowanwilliams.archbishopofcanterbury.org/articles.php/2645/archbishops
-address-to-the-synod-of-bishops-in-rome (accessed May 27, 2014).
“mystical way in everyday life”: Karl Rahner, The Mystical Way in Everyday Life: Sermons, Prayers, and Essays, trans. and ed. Annemarie S. Kidder (Maryknoll, NY: Orbis Books, 2009).
“it is faith itself that shapes”: Remarks of Archbishop Williams.
“The joys and the hopes”: Second Vatican Council, Pastoral Constitution on the Church in the Modern World: Gaudium et Spes, December 7, 1965, available at www.vatican.va/archive/hist_councils/ii_vatican_council/documents/vat-ii_const_19651207_gaudium-et-spes_en.html (accessed May 27, 2014).
“Almighty God, we thank you”: Sargent Shriver, address to the Board of Directors of Special Olympics, 1997.
“The need for a special athletic competition”: Brochure announcing “Chicago Special Olympics.” Published by the Chicago Park District and the Joseph P. Kennedy, Jr. Foundation, 1968, Archives of the Kennedy Foundation.
“The value of exercise and games”: Introduction and welcome letters to the official program, July 20, 1968, Chicago Park District and Joseph P. Kennedy, Jr. Foundation, 1968, Archives of the Kennedy Foundation.
“It wasn’t easy”: Iris Sheets, personal conversation between the author and Dave and Iris Sheets, 2013.
“We were concerned about it”: Dave Sheets, personal conversation between the author and Dave and Iris Sheets, 2013.
“I was outright scared”: Frank Starling, personal conversation with the author, summer 2013.
“I went to an all-black school”: Rafer Johnson, personal conversation with the author, 2013.
“Those at the edge of any system”: Richard Rohr, “Those at the Edge Hold the Secret,” Radical Grace: Daily Meditations (Cincinnati, OH: St. Anthony Messenger Press, 1995), 28.
7. AS SIMPLE AS POSSIBLE
“He loved it, not only because”: Frank Gifford, personal conversation with the author, ca. 2000.
In 1975, the president of the United States: Special Olympics chronology, available at www.specialolympics.org/history.aspx (accessed July 10, 2014).
“Among the Syrian Jews”: M. Basil Pennington, Centering Prayer (New York: Doubleday, 2001), 98.
“Like Mullernestredon, we often look”: Ibid., 98–99.
“There is another story”: Ibid., 99.
8. BEING IN LOVE
“lure of the transcendent”: Title of an essay collection by the scholar of religion Dwayne Huebner: The Lure of the Transcendent: Collected Essays by Dwayne E. Huebner, ed. Vikki Hillis and William F. Pinar (New York: Routledge, 1999).
“One’s being becomes being-in-love”: Bernard Lonergan, Method in Theology (Toronto: University of Toronto Press, 2007 [reprint of 1990 edition, original copyright 1971]), 104–105.
“At this point”: Richard Rohr, Yes, and…: Daily Meditations (Cincinnati, OH: Franciscan Media, 2013), 117.
9. SOCIAL AND EMOTIONAL LEARNING
“He worked in the stone quarry”: This and the quotes that follow are from personal conversations between the author and Loretta Claiborne in 2012.
“to ship the mentally retarded”: NBC News, “Suffer the Little Children,” 1968.
10. LORETTA
“Students, faculty, parents, and friends”: Loretta Claiborne, Quinnipiac University commencement speech, 1995. Transcript supplied by the university.
“Desire. Strength. Heart”: Denzel Washington, presentation of the 1996 ESPY Arthur Ashe Courage Award to Loretta Claiborne, Radio City Music Hall, New York, February 12, 1996.
11. TOUGH WORLD
and thus, in one small house, began: L’ Arche website, www.larche.org/en/discover/larche_since_its_creation (accessed April 23, 2014).
“My goal was simply to welcome”: Jean Vanier, words spoken at a retreat, Christmas 2011.
“In the Bible, we hear”: Ibid.
“When I left [the lepers]”: St. Francis of Assisi, “The Testament,” October 1226, in Francis and Clare: The Complete Works (Mahwah, NJ: Paulist Press, 1982), 154.
I was there thanks to the generosity: The Very Special Christmas series has published dozens of albums, videos, DVDs, and television programs since 1987. For more information, visit specialolympics.org.
12. THE FUN THAT LASTS
“[Man] is only completely a man”: Friedrich von Schiller, “Letters upon the Æsthetic Education of Man: Letter XV,” in The Harvard Classics, vol. 32, Literary and Philosophical Essays: French, German and Italian (New York: P. F. Collier & Son, 1910), available at www.bartleby.com/32/515.html (accessed May 27, 2014).
13. I AM SO PROUD
“courage, spirit, resolution”: See freedictionary.com.
“Men the world over possess”: William James, The Energies of Men (New York: Moffat, Yard and Company, 1914), 9, 14.
But Duckworth and her colleagues have found: Angela L. Duckworth, Christopher Peterson, Michael D. Matthews, and Dennis R. Kelly, “Grit: Perseverance and Passion for Long-Term Goals,” Journal of Personality and Social Psychology 92, no. 6 (2007): 1087–1101.
more than 75 percent of the population: United Nations Statistics Division, Millennium Development Goals Database, available at http://data.un.org/Data.aspx?d=MDG&f=seriesRowID%3A580 (accessed May 27, 2014).
14. THE HEART OFF GUARD
“Céad míle fáilte”: Mary McAleese, remarks, 2003 Special Olympics World Summer Games opening ceremony, transcript available, Special Olympics Library, Washington, DC.
“the president of everywhere”: Bono, remarks, 2003 Special Olympics World Summer Games opening ceremony, transcript available, Special Olympics Library, Washington, DC.
“The Special Olympics give”: Special Olympics Ireland YouTube channel, www.youtube.com/watch?v=L301FOdn1-8 (accesseda April 23, 2014).
“History says, don’t hope”: Seamus Heaney, The Cure at Troy: A Version of Sophocles’ Philoctetes (New York: Farrar, Straus and Giroux, 1991), 77.
“Useless to think you’ll park”: Seamus Heaney, “Postscript,” The Spirit Level (New York: Farrar, Straus and Giroux, 1996), 82.
15. HUMILITY AND SIMPLICITY
He grew up under: Nelson Mandela, Long Walk to Freedom (Boston: Back Bay Books, 1995).
Hundreds of thousands of people with: A 2001 census estimated that 2,255,982 South Africans had disabilities, of whom about 12.5 percent had intellectual disabilities. “Prevalence of disability in South Africa” (Pretoria: Statistics South Africa, 2005), 12–14, available at www.statssa.gov.za/census01/html/Disability.pdf (accessed April 23, 2014).
“choiceless singularity of human identity”: Amartya Sen, Identity and Violence: The Illusion of Destiny (New York: W. W. Norton, 2007), 16.
“our ability to identify”: Simon Baron-Cohen, The Science of Evil: On Empathy and the Origins of Cruelty (New York: Basic Books, 2012), 18.
“Empathy erosion arises”: Ibid., 7.
“empathy has been turned off”: Ibid., 21.
“Hunger, toil, and solitude are”: Evagrius Ponticus, The Praktikos and Chapters on Prayer, 15–40, trans. John Eudes Bamberger, OCSO (Kalamazoo, MI: Cistercian Publications, 1970), reproduced in The Essential Writings of Christian Mysticism, ed. Bernard McGinn (New York: Modern Library Classics, 2006), 56–57.
16. FULLY ALIVE
“Our happiness comes from creating”: Jean Vanier, words spoken at a retreat, July 2012.
“Faith … means ultimate trust”: David Steindl-Rast, Deeper than Words: Living the Apostles’ Creed (New York: Doubleday, 2010), 60.
“The Chinese government and people”: Text e-mailed to the author by Mary Gu, Special Olympics East Asia, April 15, 2014.
17. STORM THE CASTLE
“He who knows it”: Albert Einstein, The World as I See It (New York: Citadel Press Books, 1956), 7.
more than 90 percent of children diagnosed prenatally: Caroline Mansfield, Suellen Hopfer, and Theresa M. Marteau, “Termination Rates After Prenatal Diagnosis of Down Syndrome, Spina Bifida, Anencephaly, and Turner and Klinefelter Syndromes: A Systematic Literature Review,�
� Prenatal Diagnosis 19, no. 9 (September 1999): 808–12.
more than 95 percent of children in the developing world: From Exclusion to Equality: Realizing the Rights of Persons with Disabilities—Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and Its Optional Protocol (New York/Geneva/Le Grand-Saconnex [Switzerland]: United Nations Department of Economic and Social Affairs, Office of the United Nations High Commissioner for Human Rights, and Inter-Parliamentary Union, 2007), 82, available at www.ipu.org/PDF/publications/disabilities-e.pdf (accessed July 3, 2014).
“There is always a moment”: Alice Walker, reflections on “Working Toward Peace,” www.scu.edu/ethics/architects-of-peace/Walker/essay.html (accessed April 23, 2014).
Acknowledgments
In a way, this book is my attempt to say thank you to the amazing human beings who have made me the richest man in the world (okay, not literally, though definitely in the way that matters most). I can’t begin to list them all, nor capture their gifts in words, nor count the blessings they have given me. But if there is anything of value in this book, it is because so many people have tried so hard to teach me how to be fully alive.
The earliest inspiration for this book were my parents, Sargent and Eunice Shriver, pioneers, revolutionaries, believers, lovers. The greatest gift my parents gave me is faith; a close second are my brothers, Bobby, Mark, and Anthony, and my sister, Maria—together we were the “Lucky 7.” They, along with Alina, Jeanne, and Malissa and all their children, are my links to the past and the best party I could ever hope to find in the present. I love them all from a place I cannot describe and won’t try to.
When I set off on my career in New Haven, Connecticut, my understanding of the ways of living fully alive took a turn toward intensity. I met educators who made me laugh, think, cry, and fall in love with school for the first time. Bob Brown, Iris Kinnard, Red and Anne Verderame, John Dow, Rosa Quezada, Burt Glassman, Ben Hunter, Harry Reid, Carl Marottolo, Burt Saxon, Wendy Samberg, Wanda Gibbs, Ernie Roth, Bridget Hardy, Mustafa Abdul-Salaam, Sandi White, Lonnie Garris, Gary Highsmith, Karol DeFalco, Mickey Kavanagh, Miriam Camacho, Dee Speese-Linehan, Willie Elder, and Karen O’Conner all taught me how to teach, how to listen, how to laugh, how to stop fights—and how to start a few as well. They mentored me in just the ways I needed most. The lessons about school in this book were taught to me by them.