[68] “baby boomers’ vast sense of entitlement” George F. Will, “Jon Will, 40 Years and Going with Down Syndrome,” Washington Post, May 2, 2012, https://www.washingtonpost.com/opinions/jon-will-40-years-and-going-with-down-syndrome/2012/05/02/gIQAdGiNxT_story.html.
[69] “It would be unfair to single out” Tucker Carlson, “Eugenics, American Style,” Weekly Standard, December 1, 1996, http://www.weeklystandard.com/article/9150. For Slate‘s reframing of the essay, see http://www.slate.com/articles/news_and_politics/politics/2012/02/rick_santorum_prenatal_testing_and_abortion_tucker_carlson_s_classic_essay_on_prenatal_testing_and_the_abortion_of_down_syndrome_babies_.html.
[80] a searingly honest chronicler of her own battles with brain tumors and seizure disorders Alison Piepmeier’s blog, http://alisonpiepmeier.blogspot.com/, is titled Every Little Thing. It is, I think, among the most important blogs I have ever read, and I have read many thousands.
[82] “The guest post here on Friday” Lisa Belkin, “Should Down Syndrome Be Cured?,” New York Times, January 11, 2010, http://parenting.blogs.nytimes.com/2010/01/11/should-down-syndrome-be-cured/.
[83–84] “As you know, I have many years” Parker Donham, “A ‘Cure’ for Down Syndrome?—Reader Feedback #6,” Contrarian, November 27, 2009, http://contrarian.ca/2009/11/27/a-cure-for-down-syndrome-%E2%80%94-reader-feedback-6/.
[84] “the Enlightenment prejudice against prejudice” Hans-Georg Gadamer, Truth and Method (London: Continuum International, 1975).
[87] its pity-laden anti-polio campaigns See, for example, Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Times Books, 1993), and Rosemarie Garland-Thompson, “The Politics of Staring: Visual Rhetorics of Disability in Popular Photography,” in Disability Studies: Enabling the Humanities (New York: Modern Language Association, 2002), ed. Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 56–75.
[88] essays on the overlap between disability activism and gay/lesbian activism Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006).
[89] as the Autism Self-Advocacy Network points out “2014 Joint Letter to the Sponsors of Autism Speaks,” January 6, 2014, http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/.
[89–90] “Are babies who are born” The comment is signed “Denarthurdent” and was posted on the same day as Belkin’s essay. New York Times, January 11, 2010, http://parenting.blogs.nytimes.com/2010/01/11/should-down-syndrome-be-cured/?_r=0#permid=14.
[90] “A Drug for Down Syndrome” Dan Hurley, New York Times, July 31, 2011. http://www.nytimes.com/2011/07/31/magazine/a-fathers-search-for-a-drug-for-down-syndrome.html.
[91] building brain power Dan Hurley, Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It (New York: Kaplan, 2011), and Smarter: The New Science of Building Brain Power (New York: Plume, 2013).
[92] “Can a Pill Make People with Down Syndrome Smarter?” Ilena Silverman, The 6th Floor (blog), New York Times, July 17, 2012, http://6thfloor.blogs.nytimes.com/2012/07/17/can-a-pill-make-people-with-down-syndrome-smarter/.
[98] “the eventually predictable alternation” Roslyn Sulcas, “A Seascape Dotted by Chaotic Bursts,” New York Times, November 30, 2007, http://www.nytimes.com/2007/11/30/arts/dance/30papp.html.
[101] “A domesticated dog” Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues (Peru, IL: Open Court, 1999), 44.
[103] “Sultan [a chimpanzee] is alone in his pen” J. M. Coetzee, Elizabeth Costello (New York: Penguin, 2003), 72–74.
[113] “blown out of proportion” Chuck Brittain, “Boy Says Coach Paid Him $25 to Injure Player,” Pittsburgh Tribune, July 16, 2005, http://triblive.com/x/pittsburghtrib/news/regional/fayette/s_354047.html.
[118] “Obama is allowed” Editorial, Washington Times, March 22, 2009, http://www.washingtontimes.com/news/2009/mar/22/in-defense-of-humor-and-president-obama/.
[118–119] “All over Soldier Field” Shriver, Fully Alive, 98.
[132] “that glow has to last” Lawrence Downes, “Special Olympics and the Burden of Happiness,” New York Times, July 31, 2015, http://www.nytimes.com/2015/08/01/opinion/special-olympics-and-the-burden-of-happiness.html.
[137] “retarded children [in] classrooms” Roger Kimball, “What’s Wrong with Equality?,” New Criterion (October 1994), http://www.newcriterion.com/articles.cfm/What-s-wrong-with-equality–8149. Of one such child, Henry wrote, “If she is not ‘stupid,’”—as her guardian insisted—“then what does mentally retarded mean?” This, I submit, is an exceptionally stupid question. William A. Henry III, In Defense of Elitism (New York: Anchor, 1994), 130.
[139] “the ideal scheme” Bérubé, Life as We Know It, 218.
[151] Lindsay’s speech, and half of Jamie’s, can be seen on YouTube Lindsay’s is at https://www.youtube.com/watch?v=YddIad1CaKg, and Jamie’s is at https://www.youtube.com/watch?v=09aL-_n9cZI.
[163] an account of Jamie’s search for work Michael Bérubé, “For Hire: Dedicated Young Man with Down Syndrome,” Al Jazeera America, May 25, 2014, http://projects.aljazeera.com/2014/portrait-of-down-syndrome/.
[165] 1100 CE constituted the good old days Henri-Jacques Stiker, A History of Disability, trans. William Sayers (Ann Arbor: University of Michigan Press, 1999).
[166] That’s not just because courts In the late 1990s and early 2000s, a series of particularly absurd cases demonstrated the lengths to which the Supreme Court was willing to go to find against plaintiffs—not on the grounds that they were actually incapable of performing their jobs, but on the grounds that they were “not disabled enough” to sue, even though they were too disabled to perform specific jobs. In Sutton v. United Air (1999), the Court held that severely nearsighted sisters could not become airline pilots, not because of their nearsightedness but because their nearsightedness was “easily correctable.” The same logic extended to a truck driver: in Albertsons v. Kirkingburg, the Court found against the truck driver, Hallie Kirkingburg, and for his employer, because his vision did not meet Department of Transportation standards. Again, the Court did not rule against Kirkingburg because of his eyesight; indeed, Kirkingburg was fired after he had obtained the necessary Department of Transportation waiver that would permit him to keep driving. Rather, the Court found against him because he had, by the majority’s logic, no standing to sue under the ADA as a person with an “easily correctable” disability. Finally, in 2002, in Toyota v. Williams, the Court found for Toyota and against Ella Williams not because Williams’s carpal tunnel syndrome prevented her from working on an assembly line, but because the ADA defines disability as a physical impairment that “substantially limits one or more . . . major life activities,” and Ms. Williams was capable of brushing her teeth. It would have been perfectly reasonable for the Court to decide that Toyota had in fact tried to offer Williams “reasonable accommodation” (they had offered her various other tasks) and that anything more would constitute “undue hardship” for an employer under the law. But no, the Court was primarily concerned with limiting the number of potential plaintiffs under the law, and so Ms. Williams was deemed non-disabled insofar as she was capable of taking care of her daily dental hygiene. Leaving aside the question of whether brushing one’s teeth was a major life activity for most humans over the course of human history, surely the Court should have asked whether it is possible for people to earn a living by brushing their teeth. But that would involve reading the ADA as some kind of employment law.
[167] “There are exceptions” Michelle Diamant, “Obama Signs Law Limiting Sheltered Workshop Eligibility,” Disability Scoop, July 22, 2014, https://www.disabilityscoop.com/2014/07/22/obama-law-limiting-sheltered/19538/.
[167] Within three years Halle Stockton, “Vermont Closed Workshops For People with Disabilities; What Happened Next?,” PublicSource, September 28, 2014, http://publicsource.org/investigations/
vermont-closed-workshops-for-people-with-disabilities-what-happened-next#.VrPTf7IrJD8.
[171] the first major works in disability studies Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (New York: Verso, 1995); Rosemarie Garland-Thompson, Freakery: Cultural Spectacles of the Extraordinary Body (New York: New York University Press, 1996); David T. Mitchell and Sharon L. Snyder, The Body and Physical Difference: Discourses of Disability (Ann Arbor: University of Michigan Press, 1997); and Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998).
[172] “the philosopher’s nightmare” Licia Carlson, The Faces of Intellectual Disability: Philosophical Reflections (Bloomington: Indiana University Press, 2009), 4.
[173] “Progress in genetics” Jonathan Glover, Choosing Children: Genes, Disability, and Design (Oxford, UK: Oxford University Press, 2006).
[173] “argument against ‘designer babies’” Michael Sandel, The Case Against Perfection: Ethics in the Age of Genetic Engineering (Cambridge, MA: Harvard University Press, 2004).
[173] “it is common to say” Glover, Choosing Children, 36.
[180] James Watson “James Watson’s Legacy,” Biopolitical Times (blog of the Center for Genetics and Society), October 22, 2007, http://www.biopoliticaltimes.org/article.php?id=3723. Watson’s quote on Down syndrome is from a 1997 article in the UK Telegraph: Victoria Macdonald, “Abort Babies with Gay Genes, Says Nobel Winner,” February 16, 1997, https://web.archive.org/web/20071022153711/http://telegraph.co.uk/htmlContent.jhtml?html=/archive/1997/02/16/nabort16.html. In 2007, Michael Gerson, speechwriter for President George W. Bush, wrote about these remarks here: “The Eugenics Temptation,” Washington Post, October 24, 2007, http://www.washingtonpost.com/wp-dyn/content/article/2007/10/23/AR2007102301803.html.
[180] “I am against society imposing rules” quoted in Glover, Choosing Children, 73.
[180] “genetic tourism” Ibid., 77.
[180] “the film’s genetics counselor” See my discussion of Gattaca, race, and disability: “Disability, Democracy, and the New Genetics,” in The Disability Studies Reader, 4th ed. (New York: Routledge, 2013), ed. Lennard J. Davis, 101–4.
[181] “sometimes disabilities arouse” Glover, Choosing Children, 75–76.
[182] “banish disease from the human frame” Mary Shelley, Frankenstein, or The Modern Prometheus, 1818 text, ed. Marilyn Butler (Oxford, UK: Oxford University Press, 1994), 24.
[183–184] “To me, disability is not neutral” Tom Shakespeare, reply to Michael Bérubé, “Humans, Disabilities, and the Humanities?,” On the Human, a project of the National Humanities Center, January 29, 2011, http://nationalhumanitiescenter.org/on-the-human/2011/01/humans-disabilities-humanities/comment-page-1/#comment-4573.
[185] “legislatures are trying to outlaw abortion when the fetus has Down syndrome” See Rachel Adams, “My Son with Down Syndrome Is Not a Mascot for Abortion Restrictions,” Washington Post, February 19, 2016, https://www.washingtonpost.com/opinions/my-son-has-down-syndrome-is-not-a-mascot-for-abortion-restrictions/2016/02/19/cecd3c78-d119-11e5-88cd-753e80cd29ad_story.html.
[185] “If I had this baby at 44” Rayna Rapp, Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (New York: Routledge, 1999), 146.
[186] “Affected individuals typically” “Klinefelter Syndrome,” Genetics Home Reference, http://ghr.nlm.nih.gov/condition/klinefelter-syndrome, accessed February 1, 2016.
[187] “I remain unpersuaded” Bérubé, “Disability, Democracy, and the New Genetics,” 104–5.
[187] “In both the deontological and utilitarian traditions” Michael Bérubé, michaelberube.com, blog post, “Liberals in Their Own Words,” April 6, 2005, http://www.michaelberube.com/index.php/weblog/liberals_in_their_own_words/.
[188] the remarkable writing of Emily Rapp Emily Rapp, The Still Point of the Turning World: A Memoir (New York: Penguin, 2013).
[188–189] “I love my son” Emily Rapp, “Rick Santorum, Meet My Son,” Slate, February 27, 2012, http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html.
[190] who dies in his sleep at the age of seventeen Marianne Leone, Jesse: A Mother’s Story (New York: Simon and Schuster, 2010).
[196] “It is scarcely the same thing” Henry, In Defense of Elitism, 14.
[197] “MIT and Quaker Oats” New York Times, “Settlement Reached in Suit Over Radioactive Oatmeal Experiment,” January 1, 1998, http://www.nytimes.com/1998/01/01/us/settlement-reached-in-suit-over-radioactive-oatmeal-experiment.html.
[197] the killing of Ethan Saylor David M. Perry, “Justice for Down Syndrome Man Who Died in Movie Theater,” CNN.com, August 29, 2013, http://www.cnn.com/2013/08/29/opinion/perry-down-syndrome-death/.
[198] “participatory parity” Nancy Fraser, Justice Interruptus: Critical Reflections on the “Postsocialist” Condition (New York: Routledge, 1997).
[199] what her life with Sesha has taught her about life Eva Feder Kittay, Love’s Labor: Essays on Women, Equality, and Dependency (New York: Routledge, 1999).
[200] I discuss Singer and McMahan briefly Michael Bérubé and Jennifer Ruth, The Humanities, Higher Education, and Academic Freedom: Three Necessary Arguments (New York: Palgrave Macmillan, 2015), 42–47.
[200] “If it happens that one of you is an alien” Peter Singer, “Speciesism and Moral Status,” in Cognitive Disability and its Challenge to Moral Philosophy (Malden, MA: Wiley-Blackwell, 2010), ed. Eva Feder Kittay and Licia Carlson, 336.
[201] correlation between cognitive capacity and moral standing The discussion of killing squirrels does not appear in the essay McMahan eventually submitted for publication in Kittay and Carlson, Cognitive Disability and Its Challenge to Moral Philosophy, “Cognitive Disability and Cognitive Enhancement.” But he has made the argument elsewhere: “While it may be almost as seriously wrong to inflict great pain on a squirrel as it is to inflict a comparable degree of pain on a person, it would clearly be a mistake to suppose that to kill a squirrel is as seriously wrong as it is to kill an innocent person.” McMahan, “Animals,” in Blackwell Companion to Applied Ethics (Oxford, UK: Blackwell, 2002), ed. R. G. Frey and Christopher Wellman, http://jeffersonmcmahan.com/wp-content/uploads/2012/11/Animals1.pdf.
[205] none of us can be our own author Stanley Hauerwas, “Timeful Friends: Living with the Handicapped,” in Critical Reflections on Stanley Hauerwas’ Theology of Disability: Disabling Society, Enabling Theology (New York: Routledge, 2004), ed. John Swinton, 16.
About the Author
Michael Bérubé is the Edwin Erle Sparks Professor of Literature at Penn State University. The author of ten books, including The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read, he lives with his family in State College, Pennsylvania.
Beacon Press
Boston, Massachusetts
www.beacon.org
Beacon Press books are published under the auspices of the Unitarian Universalist Association of Congregations.
© 2016 by Michael Bérubé
All rights reserved
Text design and composition by Kim Arney
Library of Congress Cataloging-in-Publication Data
Names: Bérubé, Michael, author.
Title: Life as Jamie knows it : an exceptional child grows up / Michael Bérubé. Description: Boston : Beacon Press, 2016. | Includes bibliographical references.
Identifiers: LCCN 2016007675 (print) | LCCN 2016029597 (ebook) |
ISBN 9780807019313 (hardback) | ISBN 9780807019320 (ebook)
Subjects: LCSH: Bérubé, Michael | Bérubé, Jamie. | Parents of children with disabilities—United States—Biography. | Children with mental disabilities—United States—Biography. | People with mental disabilities—United States—Biography. | Down syndrome—United States—Case studies. | BISAC: BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs. |
SOCIAL SCIENCE / People with Disabilities.
Classification: LCC HQ759.913 .B469 2016 (print) |
LCC HQ759.913 (ebook) |
DDC 649/.151092 [B] —dc23
LC record available at https://lccn.loc.gov/2016007675
Life as Jamie Knows It Page 26