Far From the Tree

by Solomon, Andrew

All out-o’-the-way, far-fetched, perverted things,

  All freaks of nature, all Promethean thoughts

  Of man, his dulness, madness, and their feats

  All jumbled up together, to compose

  A Parliament of Monsters. Tents and Booths

  Meanwhile, as if the whole were one vast mill,

  Are vomiting, receiving on all sides,

  Men, Women, three-years’ Children, Babes in arms.

  For scholarly discussion of modern freak shows, see Michael M. Chemers, “Le freak, c’est chic: The twenty-first century freak show as theatre of transgression,” Modern Drama 46, no. 2 (Summer 2003); and Brigham A. Fordham, “Dangerous bodies: Freak shows, expression, and exploitation,” UCLA Entertainment Law Review 14, no. 2 (2007).

  329 A post–World Cup dwarf-tossing event in New Zealand eventually led to a pink slip for British rugby player Mike Tindall after paparazzi spied him cavorting there; see Richard White, “Mike Tindall gropes blonde,” Sun, September 15, 2011; Robert Kitson, “Mike Tindall defended by England after incident at ‘dwarf-throwing’ bash,” Guardian, September 15, 2011; and Rebecca English, “After World Cup shame, a £25,000 fine and humiliation for Tindall (and Zara’s face says it all),” Daily Mail, January 12, 2012. In January 2012, Leopard’s Lounge & Broil in Windsor, Ontario, hosted a dwarf-tossing event; see Sonya Bell, “Dwarf-tossing: Controversial event at Windsor strip club draws 1,000 fans,” Toronto Star, January 29, 2012. At least one adult entertainer bills herself as “the world’s smallest porn star”; see Allen Stein, “Stoughton cop resigns after he left beat to see dwarf porn star,” Enterprise News, July 20, 2010.

  330 Barbara Spiegel’s recollections come from my interview with her in 2003 and subsequent communications.

  331 Statistics on the percentage of skeletal dysplasias attributable to de novo mutations and recessive genes come from Clair A. Francomano, “The genetic basis of dwarfism,” New England Journal of Medicine 332, no. 1 (January 5, 1995); and William A. Horton et al., “Achondroplasia,”Lancet 370 (July 14, 2007).

  332 For a scholarly review article on pituitary dwarfism, see Kyriaki S. Alatzoglou and Mehul T. Dattani, “Genetic causes and treatment of isolated growth hormone deficiency: An update,” Nature Reviews Endocrinology 6, no. 10 (October 2010). Psychosocial dwarfism is discussed in Wayne H. Green, Magda Campbell, and Raphael David, “Psychosocial dwarfism: A critical review of the evidence,” Journal of the American Academy of Child Psychiatry 23, no. 1 (January 1984); and the newspaper article “The little boy who was neglected so badly by his mother that he became a dwarf,” Daily Mail, August 28, 2010.

  333 The quotation from Marie-Hélène Huet comes from pages 6–7 of her book Monstrous Imagination (1993).

  334 John Mulliken is quoted in Allison K. Jones, “Born different: Surgery can help children with craniofacial anomalies, but it can’t heal all of the pain,” Telegram & Gazette, May 23, 1995.

  335 Betty Adelson describes the thoughtless manner in which some doctors have broken the news of a child’s achondroplasia to parents on page 160 of Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature (2005).

  336 The mother’s recollection of doctors’ attitudes toward her child comes from a Yahoo! discussion group post by Brenda, June 12, 2001.

  337 Joan Ablon quotes the mother and father whose doctor told them, “I regret to tell you that your child is a dwarf,” on page 17 of Living with Difference: Families with Dwarf Children (1988).

  338 The Magic Foundation’s organizational website is at http://www.magicfoundation.org; the Human Growth Foundation’s website is at http://www.hgfound.org.

  339 The quotation from Ginny Sargent (“No matter what we [as dwarfs] feel . . .”) comes from a Yahoo! discussion group post, September 4, 2001.

  340 Matt Roloff’s reminiscence of his parents’ lowered expectations of him comes from a personal interview in 2003; he makes a similar statement on page 28 of Against Tall Odds: Being a David in a Goliath World (1999).

  341 Little People, Big World show website:http://tlc.howstuffworks.com/tv/little-people-big-world.

  342 This passage is based on my interview with Amy and Matt Roloff in 2003 and subsequent communications.

  343 Descriptions of the Roloff children come from Virginia Heffernan, “The challenges of an oversize world,” New York Times, March 4, 2006.

  344 This passage is based on my interview with Lisa Hedley in 2008 and subsequent personal communications. Her documentary on dwarfism, Dwarfs: Not a Fairy Tale, was first broadcast as part of the HBO American Undercover Sundays series on April 29, 2001. Though I have kept Lisa’s name because of the prominence of her film, her daughter’s name, Rose, is a pseudonym.

  345 One of the brochures Lisa Hedley was given was John G. Rogers and Joan O. Weiss, “My Child Is a Dwarf” (1977), published by LPA.

  346 This quotation from Lisa Hedley (“With one word my husband and I became unwitting members of a community . . .”) comes from her article “A child of difference,” New York Times Magazine, October 12, 1997.

  347 The quotation from Barbara Spiegel comes from my interview with her in 2003 and subsequent communications.

  348 Alasdair G. W. Hunter reported on his evaluation of the comparative life satisfaction of dwarfs and their parents in “Some psychosocial aspects of nonlethal chondrodysplasias I: Assessment using a life-styles questionnaire,” American Journal of Medical Genetics 78, no. 1 (June 1998); the paper was the first of a three-part series in the same issue, with “Some psychosocial aspects of nonlethal chondrodysplasias, II: Depression and anxiety” and “Some psychosocial aspects of nonlethal chondrodysplasias, III: Self-esteem in children and adults.” For more studies on the emotional lives of dwarfs and their families, see Joan Ablon’s “Ambiguity and difference: Families with dwarf children,” Social Science & Medicine 30, no. 8 (April 1990); and James S. Brust et al., “Psychiatric aspects of dwarfism,” American Journal of Psychiatry 133, no. 2 (February 1976).

  349 Study participants tended to rate their achondroplasia as “not serious” in Sarah E. Gollust et al., “Living with achondroplasia in an average-sized world: An assessment of quality of life,” American Journal of Medical Genetics 120A, no. 4 (August 2003).

  350 LPA now explicitly concerns itself with disabling conditions often accompanying short stature and includes disability rights among the organization’s advocacy areas. See http://www.lpaonline.org/mc/page.do?sitePageId=84634#Disability: “Q: Is dwarfism considered a disability? A: Opinions vary within the dwarf community about whether or not this term applies to us. Certainly many short-statured people could be considered disabled as a result of conditions, mainly orthopedic, related to their type of dwarfism. In addition, access issues and problems exist even for healthy LPs. Consider, for example, the simple fact that most achondroplastic adults cannot reach an automated teller machine. LPA is working to make common activities easily reachable by people with dwarfism—including gas pumps, pay phones, and ATM’s. Dwarfism is a recognized condition under the Americans with Disabilities Act. Information on the ADA is also available directly from the US Department of Justice, which administers the law.”

  351 Paul Steven Miller’s comment about LPA and disability occurs in chapter 6 of Dan Kennedy, Little People: Learning to See the World Through My Daughter’s Eyes (2003) at http://littlepeoplethebook.com/online-edition/chapter-06/.

  352 Rosemarie Garland Thomson’s reference to “exclusionary discourse” occurs on page 6 of Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (1997).

  353 The anonymous mother’s concerns about the implications and ramifications of physical accommodations come from a personal interview in 2003.

  354 Linda Hunt differentiates between dwarfism and disease in her letter in response to Lisa Hedley, “A child of difference,” New York Times Magazine, November 2, 1997.

  355 Joan Ablon describes the history of LPA in “Dwarfism and social identity: Self-help group participat
ion,” Social Science & Medicine 15B (1981); and Betty Adelson in both Dwarfism (2005), pages 187–90, and The Lives of Dwarfs (2005), pages 319–21. An early account of LPA’s origins can be found in Martin S. Weinberg’s “The problems of midgets and dwarfs and organizational remedies: A study of the Little People of America,” Journal of Health & Social Behavior 9, no. 1 (March 1968). LPA’s founder, the showman Billy Barty, paired with the mayor of Reno, Nevada, who sought to stimulate “newsworthy visits” to the city, and succeeded in creating considerable buzz around his new organization, attracting coverage of its inaugural conference in April 1957 by the Reno Evening Gazette, Nevada State Journal, Las Vegas Daily Optic, and the United Press national newspaper syndicate. Convention delegates were met by news photographers, and photo opportunities were had with Reno’s mayor and the police chief. The owner of the Riverside Hotel offered free rooms and convention facilities, with meals at half price, to all delegates.

  356 William Safire discusses words used to describe little people in “On language: Dwarf planet,” New York Times, September 10, 2006; see also Lynn Harris, “Who you calling a midget?,” Salon, July 16, 2009.

  357 Barnum’s most famous performers were the proportionate dwarfs Charles Sherwood Stratton and his wife, Lavinia Bump Warren, known to audiences as “General and Mrs. Tom Thumb.” Stratton is author of the extravagantly titled autobiography Sketch of the Life: Personal Appearance, Character and Manners of Charles S. Stratton, the Man in Miniature, Known as General Tom Thumb, and His Wife, Lavinia Warren Stratton, Including the History of Their Courtship and Marriage, With Some Account of Remarkable Dwarfs, Giants, & Other Human Phenomena, of Ancient and Modern Times, Also, Songs Given at Their Public Levees (1874). For a brief contemporary account of Stratton’s career, see “Giants and dwarfs,” Strand Magazine 8 (July–December 1894); for a modern analysis, see Michael M. Chemers, “Jumpin’ Tom Thumb: Charles Stratton onstage at the American Museum,” Nineteenth Century Theatre & Film 31 (2004). Lavinia Warren is the subject of Melanie Benjamin’s recent novel The Autobiography of Mrs. Tom Thumb (2011).

  358 The offending article: David Segal, “Financial fraud is focus of attack by prosecutors,” New York Times, March 11, 2009. The public editor’s follow-up: Clark Hoyt, “Consistent, sensitive and weird,” New York Times, April 18, 2009.

  359 Interview with Barbara Spiegel in 2003 and subsequent communications.

  360 Betty Adelson’s advice about names is quoted by Lynn Harris in “Who you calling a midget?,” Salon, July 16, 2009.

  361 This passage is based on my interview with Dan Kennedy, author of Little People: Learning to See the World Through My Daughter’s Eyes (2003), in 2003 and subsequent communications.

  362 For more information on the association between hearing loss and cognitive skills among dwarfs, see G. Brinkmann et al., “Cognitive skills in achondroplasia,” American Journal of Medical Genetics 47, no. 5 (October 1993).

  363 For authoritative and detailed information on dwarfing conditions, consult the National Organization for Rare Disorders (http://www.rarediseases.org), the National Library of Medicine’s Genetics Home Reference (http://ghr.nlm.nih.gov), and the Mayo Clinic (http://www.mayoclinic.com/health/dwarfism/DS01012). Useful general review articles include William A. Horton, “Bone and joint dysplasias,” in Primer on the Rheumatic Diseases (2008); David L. Rimoin et al., “The skeletal dysplasias,” Annals of the New York Academy of Sciences 1117 (December 2007); Uwe Kornak and Stefan Mundlos, “Genetic disorders of the skeleton: A developmental approach,” American Journal of Human Genetics 73, no. 3 (September 2003); and Frederic Shapiro, “Skeletal dysplasias,” in Pediatric Orthopedic Deformities: Basic Science, Diagnosis, and Treatment (2001).

  For information on specific syndromes, see:

  Achondroplasia: William A. Horton et al., “Achondroplasia,”Lancet 370 (July 14, 2007); and Pascal Richette, Thomas Bardin, and Chantal Stheneur, “Achondroplasia: From genotype to phenotype,” Joint Bone Spine 75, no. 2 (March 2008).

  Pseudoachondroplasia: Alessandro Castriota-Scanderbeg and Bruno Dallapiccola, “Pseudoachondroplasia,” in Abnormal Skeletal Phenotypes: From Simple Signs to Complex Diagnoses (2005).

  Spondyloepiphyseal dysplasia: George E. Tiller and Vickie L. Hannig, “X-Linked Spondyloepiphyseal Dysplasia Tarda,” in Gene Reviews (Internet) (1993–2011).

  Diastrophic dysplasia: National Center for Biotechnology Information, “Diastrophic dysplasia,” in Genes and Disease (Internet) (1998–2011).

  364 Victor McKusick’s estimates are quoted on page 128 of Betty M. Adelson, The Lives of Dwarfs (2005), citing Susan Lawrence, “Solving big problems for little people,” Journal of the American Medical Association 250, no. 3 (March 1983).

  365 The genetic mechanism of achondroplasia was first described by Clair A. Francomano et al., “Localization of the achondroplasia gene to the distal 2.5 Mb of human chromosome 4p,” Human Molecular Genetics 3, no. 5 (May 1994); R. Shiang, et al., “Mutations in the transmembrane domain of FGFR3 cause the most common genetic form of dwarfism, achondroplasia,” Cell 78, no. 2 (July 29, 1994); and Gary A. Bellus, “Achondroplasia is defined by recurrent G380R mutations of FGFR3,” American Journal of Human Genetics 56 (1995), pages 368–73.

  366 Achondroplasia prevalence rates come from Sue Thompson, Tom Shakespeare, and Michael J. Wright, “Medical and social aspects of the life course for adults with a skeletal dysplasia: A review of current knowledge,” Disability & Rehabilitation 30, no. 1 (January 2008).

  367 Findings of increased mortality rates in children with achondroplasia come from Jacqueline T. Hecht et al., “Mortality in achondroplasia,” American Journal of Human Genetics 41, no. 3 (September 1987); and Julia Wynn et al., “Mortality in achondroplasia study: A 42-year follow-up,” American Journal of Medical Genetics 143A, no. 21 (November 2007).

  368 Complications of hydrocephalus are discussed in Glenn L. Keiper Jr. et al., “Achondroplasia and cervicomedullary compression: Prospective evaluation and surgical treatment,” Pediatric Neurosurgery 31, no. 2 (August 1999).

  369 Dwarfism caused by inadequate iodine intake/uptake, known as cretinism, is discussed in Zu-Pei Chen and Basil S. Hetzel, “Cretinism revisited,” Best Practice & Research Clinical Endocrinology & Metabolism 24, no. 1 (February 2010).

  370 For more detailed scholarly resources on physical problems experienced by dwarfs, see Patricia G. Wheeler et al., “Short stature and functional impairment: A systematic review,” Archives of Pediatric & Adolescent Medicine 158, no. 3 (March 2004).

  371 Dental problems in short-statured children are described in Heidrun Kjellberg et al., “Craniofacial morphology, dental occlusion, tooth eruption, and dental maturity in boys of short stature with or without growth hormone deficiency,” European Journal of Oral Sciences 108, no. 5 (October 2000).

  372 Techniques for supporting proper posture for children with achondroplasia are described in Cheryl S. Reid’s LPA brochure, “Handling the newborn and young infant with achondroplasia” (1993). The AAP advises pediatricians to instruct parents appropriately in Tracy L. Trotter et al., “Health supervision for children with achondroplasia,” Pediatrics 116, no. 3 (2005). See also Richard M. Pauli, “The natural histories of bone dysplasias in adults: Vignettes, fables and just-so stories,” American Journal of Medical Genetics Part C: Seminars in Medical Genetics 145C, no. 3 (August 2007).

  373 Physical activities that create pressure on the spine and increase the risk of developing osteoarthritis are contraindicated for people with bone disorders; see Tracy L. Trotter et al., “Health supervision for children with achondroplasia,” Pediatrics 116, no. 3 (2005).

  374 See Richard Pauli et al., Understanding Developmental Differences in Young Children with Achondroplasia (1991).

  375 LPA facilitated its members’ participation in a study by Jacqueline T. Hecht et al., “Obesity in achondroplasia,” American Journal of Medical Genetics 31, no. 3 (November 1988). The problem of monitoring weight gain in children with atypical growt
h is addressed in Julie Hoover-Fong et al., “Weight for age charts for children with achondroplasia,” American Journal of Medical Genetics Part A 143A, 19 (October 2007).

  376 Useful scholarly articles on medical complications of dwarfism include Steven E. Kopits, “Orthopedic complications of dwarfism,” Clinical Orthopedics & Related Research 114 (January–February 1976); Dennis C. Stokes et al., “Respiratory complications of achondroplasia,” Journal of Pediatrics 102, no. 4 (April 1983); Ivor D. Berkowitz et al., “Dwarfs: Pathophysiology and anesthetic implications,” Anesthesiology 7, no. 4 (October 1990); Cheryl S. Reid et al., “Cervicomedullary compression in young patients with achondroplasia: Value of comprehensive neurologic and respiratory evaluation,” Journal of Pediatrics 110, no. 4 (1987); Rodney K. Beals and Greg Stanley, “Surgical correction of bowlegs in achondroplasia,” Journal of Pediatric Orthopedics 14, no. 4 (July 2005); and Elisabeth A. Sisk et al., “Obstructive sleep apnea in children with achondroplasia: Surgical and anesthetic considerations,”Otolaryngology—Head and Neck Surgery 120, no. 2 (February 1999).

  377 This passage is based on my interview with Leslie Parks in 2003 and subsequent communications.

  378 The cliché about cheery children is exemplified by Drash et al., who are regarded as “dated” and too narrowly focused by Thompson et al. See Philip W. Drash, Nancy E. Greenberg, and John Money, “Intelligence and personality in four syndromes of dwarfism,” in Human Growth, edited by D. B. Cheek (1968); and Sue Thompson, Tom Shakespeare, and Michael J. Wright, “Medical and social aspects of the life course for adults with a skeletal dysplasia: A review of current knowledge,” Disability & Rehabilitation 30, no. 1 (January 2008), pages 1–12.

  379 Studies by Joan Ablon have concluded that dwarf children often develop bright personalities to compensate for their social challenges; see Living with Difference (1988), page 17; and “Personality and stereotype in osteogenesis imperfecta: Behavioral phenotype or response to life’s hard challenges?,” American Journal of Medical Genetics 122A (October 15, 2003).