Chorea and community in a nineteenth-century town

Bulletin of the History of Medicine

Volumn 76, Issue 3, 2002, Pages 495-527

  Wexler, Alice R ^a  

^a NONE

Author keywords

Disability studies; East Hampton; George Huntington; Huntington's chorea; Huntington's disease; Magrums; Megrims; St. Vitus's dance

Indexed keywords

ARTICLE; ATTITUDE TO HEALTH; HISTORY; HUMAN; HUNTINGTON CHOREA; SOCIAL CLASS; SOCIAL STATUS; UNITED STATES;

ATTITUDE TO HEALTH; HISTORY, 19TH CENTURY; HUMANS; HUNTINGTON DISEASE; NEW YORK; SOCIAL CLASS; SOCIAL CONDITIONS;

EID: 0036719042     PISSN: 00075140     EISSN: None     Source Type: Journal    
DOI: 10.1353/bhm.2002.0150     Document Type: Review

References (139)

1. Sag Harbor Gazette, 30 June 1806, unpaged.
2. Sag Harbor Gazette, 1806, ibid.
3. "One of Ours," a column in the East Hampton Star written in the 1950s by local historian Jeanette Edwards Rattray, Star publisher and editor.
4. See also Records of the Town of East Hampton, Long Island Suffolk Co., N.Y., with Other Ancient Documents of Historic Value, vols. 1-5 (Sag Harbor: J. H. Hunt, 1887-1905);
5. T. H. Breen, Imagining the Past: East Hampton Histories (New York: Addison Wesley, 1989).
6. Abel Huntington Daybook, 23 and 27 May, 7 June 1806, Long Island Collection, East Hampton Library, East Hampton, N.Y. (hereafter LIC).
7. Sag Harbor Gazette, 30 June 1806.
8. Timothy Miller Journal, unpaged, LIC.
9. Sag Harbor Gazette, 7 July 1806.
10. Sag Harbor Gazette, 30 June 1806.
11. Emily Abel, Hearts of Wisdom: American Women Caring for Kin, 1850-1940 (Cambridge: Harvard University Press, 2000);
12. Nora Ellen Groce, Everyone Here Spoke Sign Language: Hereditary Deafness on Martha's Vineyard (Cambridge: Harvard University Press, 1985);
13. Cornelia Dayton, "'A Burst Man': Joseph Gorham Presents the Puzzle of Autism to 18th-century Cape Cod" (Paper presented to the Columbia Seminar on Early America, Columbia University, New York, N.Y., 11 May 1999);
14. Ellen Dwyer, "Stories of Epilepsy, 1880-1930," in Framing Disease: Studies in Cultural History, ed. Janet Golden and Charles E. Rosenberg (New Brunswick, NJ.: Rutgers University Press, 1992);
15. Howard Kushner, A Cursing Brain?: The Histories of Tourelle Syndrome (Cambridge: Harvard University Press, 1999);
16. Roy Porter, Mind-Forg'd Manacles: A History of Madness in England From the Restoration to the Regency (Cambridge: Harvard University Press, 1987);
17. Sheila M. Rothman, Living in the Shadow of Death: Tuberculosis and the Social Experience of Illness in American History (Baltimore: Johns Hopkins University Press, 1994);
18. Laurel Thatcher Ulrich, The Midwife's Tale: The Life of Martha Ballard Based on her Diary, 1785-1812 (New York: Vintage, 1990).
19. See Clifford Geertz, Local Knowledge: Further Essays in Interpretive Anthropology (New York, Basic Books, 1983).
20. Many authors have cited William Browning's 1908 claim that "magrums" was "a household word long in use up and down the Hudson River valley, especially amongst the Dutch and those in touch with Dutch influence" (William Browning, "Sketch of Rev. C.O. Waters, M.D.," Neurographs: 1908, 1 [2], Huntington issue: 143)
21. However, "magrums" is also a Lancashire dialect word meaning "in a state of temper or rage," a meaning that accords well with symptoms of Huntington's chorea: see Alan Cobham, A Glossary of Lancashire Words as Spoken in Mawdesley (www.mawdesley-village.co.uk/dialect2.html#1).
22. Some of the first English medical reports of hereditary chorea in the nineteenth century came from the Lancashire region, suggesting the possibility that the earliest English families with the disease who immigrated to North America originally came not from East Anglia, as proposed by P. R. Vessie, but from Lancashire, bringing the word "magrums" with them. See Percy R. Vessie, "On the Transmission of Huntington's Chorea for 300 Years - The Bures Family Group," J. Nerv. & Ment. Dis., 1932, 76:553-73.
23. Henry P. Hedges (1817-1911), an East Hampton native, attorney and judge, wrote in 1908 that this chorea was "known in my youth only as St. Vitus Dance." (H. P. Hedges to George Huntington, 9 July 1908, Eugenics Record Office Papers, American Philosophical Society, Philadelphia, Pa. [hereafter ERO Papers].) George Huntington was not the first to describe hereditary chorea in the medical literature; however, most writers consider his 1872 account the most accurate and complete to that time.
24. George Huntington, "On Chorea," Med. & Surg. Rep. (Philadelphia), 13 April 1872, 26:317-21, quotation on p. 320.
25. George Huntington, "On Chorea," Med. & Surg. Rep. (Philadelphia), 1872, 26:317-21, Ibid.
26. Elizabeth B. Muncey, "Huntington's Chorea," 1913;
27. reprinted as "The 'Classical' Family of Huntington's Chorea," ed. Sheldon C. Reed (Minneapolis: Dight Institute for Human Genetics of the University of Minnesota, Minneapolis, 1963), mimeographed;
28. manuscript notes in ERO Papers;
29. Smith Ely Jeliffe, "A Contribution to the History of Huntington's Chorea - A Preliminary Report," in Neurographs (n. 10), pp. 116-20. While I accepted the judgments of East Hampton natives about individuals they believed suffered with chorea, I used Muncey's judgments critically and tried to get a second local assessment before accepting her diagnosis of an individual as a valid reflection of community opinion. Muncey often recorded her informants' comments sympathetically, but she used no neurological tests, and evidently confused dominant with recessive inheritance: she believed the disease was dying out due to "the admixture of new blood" and the marriage of affected individuals into unaffected families. Nonetheless, in 1964, Sheldon Reed reprinted her manuscript without critical commentary, suggesting that "it may be useful in helping the physician or genetic counselor to bring understanding to the descendants of the patients with appropriate adjustment to the facts of the heredity of this disease." To his credit, Reed warned against depositing the Muncey manuscript in any public library, a caution unfortunately not heeded.
30. Landon Carter Gray, A Treatise on Nervous and Mental Diseases (Philadelphia: Lea Brothers, 1895), p. 343.
31. In 1913, Elizabeth Muncey wrote that she believed the disease had been more common two hundred years earlier (that is, in the early eighteenth century), though she offered no evidence for this claim: Muncey, "Huntington's Chorea" (n. 14), p. 2.
32. Huntington's Disease Collaborative Research Group, "A Novel Gene Containing a Trinucleotide Repeat That Is Expanded and Unstable on Huntington's Disease Chromosomes," Cell, 1993, 72:971-83, on p. 971.
33. Sander L. Gilman, Disease and Representation: Images of Illness from Madness to AIDS (Ithaca: Cornell University Press, 1988), p. 7.
34. Esther Cohen, "The Animated Pain of the Body," Am. Hist. Rev., February 2000, 105: 36-68, on pp. 36-37.
35. H. C. Erik Midelfort, A History of Madness in Sixteenth-Century Germany (Stanford: Stanford University Press, 1999), p. 37.
36. Thomas Sydenham, Schedula monitoria de novae febris ingressu (London, 1686), p. 28 (my translation).
37. William Buchan, Domestic Medicine, 2d ed. (London: Strahan Cadell, 1772), pp. 551-52.
38. Ulrich, Midwife's Tale (n. 9), p. 11.
39. In 1785, in Hamlet parish, near Salem, Mass., a woman died at the age of fifty-six "of St. Anthony's dance, had it for 12 years" (Vital Records of Ipswich . . . [Salem: Essex Institute, 1910], 2: 548); this case very likely was hereditary chorea. (I am grateful to Cornelia Dayton for this reference.)
40. William Osier, On Chorea and Choreiform Affections (Philadelphia: Blakiston & Sons, 1894,) p. B. On the difficulties for nineteenth-century physicians in distinguishing the different types of movement disorders,
41. see Kushner, Cursing Brain (n. 9), esp. pp. 32-39.
42. See also James Boswell's famous 1791 description of Samuel Johnson as suffering from "that distemper called St. Vitus's dance" (James Boswell, The Life of Samuel Johnson [New York: Random House, 1952], p. 41); modern scholars believe Johnson's symptoms resembled the modern Tourette syndrome.
43. See George Huntington, "Recollections of Huntington's Chorea as I Saw It at East Hampton, Long Island, During My Boyhood," J. Nerv. & Ment. Dis., 1910, 37:255-57, on p. 255.
44. The origin stories told by East Hampton people also indicate local belief in the hereditary transmission of the illness. Irving W. Lyon, a physician who had grown up in Bedford, Westchester County, N.Y., another major site of afflicted families, emphasized in 1863 "the deep-seated popular belief in the hereditary nature of the disease" (Irving W. Lyon, "Chronic Hereditary Chorea," Amer. Med. Times, 1863, 7:289-90).
45. In the 1899 edition of his medical textbook, William Osier cited the East Hampton physician Edward Osborne as saying that the disease had existed in that town "for fully two centuries," suggesting that people had been aware of its hereditary transmission since the early 1700s (William Osler, The Principles and Practice of Medicine, 3d. Ed. [New York: Appleton, 1899], p. 1090).
46. Charles E. Rosenberg, "The Bitter Fruit: Heredity, Disease, and Social Thought in Nineteenth Century America," in Perspectives in American History, vol. 8, ed. Donald Fleming and Bernard Bailyn (Cambridge: Harvard University Press, 1974), pp. 198, 202.
47. George Huntington, "On Chorea" (n. 12), p. 320. Huntington accurately described what was later called dominant inheritance: each child of an affected parent had a 50 percent risk of inheriting the disease gene and eventually becoming ill; but a child who did not inherit the faulty gene would be spared, as would his or her descendants.
48. George Huntington, "On Chorea" (n. 12), p. 320, Ibid.
49. George Huntington, "On Chorea" (n. 12), p. 320, Ibid.
50. George Huntington, "On Chorea", Ibid., p. 321.
51. George Huntington, "On Chorea", Ibid., p. 320.
52. Henry P. Hedges to George Huntington, 9 July 1908, ERO Papers.
53. Huntington, "On Chorea" (n. 12), p. 321.
54. Diary of Frances Huntting, 15 December 1856, LIC.
55. Huntington, "Excerpts from a Paper read at a regular meeting of the New York Neurological Society, 7 December 1909," possession of Charles Gardiner Huntington III, Simsbury, Conn.
56. "By the end of the eighteenth century, melancholy behavior followed by suicide was almost uniformly connected with mental illness in England and in the new United States" (Howard Kushner, American Suicide [New Brunswick: Rutgers University Press, 1991], p. 17).
57. But see also Joseph Lathrop, Two Sermons on the Atrocity of Suicide, Suffield, 1805,
58. and Samuel Miller, The Guilt, Folly, and Sources of Suicide: Two Discourses Preached in the City of New York, February 1805;
59. also coroners' inquest on Lucretia Petty, 14 July, 1810, "by which it appears that she feloniously hanged herself (a felo de se)" (Coroners' Reports, Suffolk County, N.Y., Oyer and Terminer, Suffolk County Court Center, Riverhead, N.Y.)
60. Suicide in East Hampton may ipso facto have given rise to suspicions in the community about the possibility of St. Vitus's dance. Geographical proximity, rather than genealogical proof, suggests the hypothesis that St. Vitus's dance came to East Hampton from Fairfield County, Connecticut, where other early American families with the disease have been traced. In any case, I agree with Jeliffe, who proposed in 1908 that both the Westchester County and the Long Island families with Huntington's chorea "sprang from an original Connecticut source" (Jeliffe, "Contribution" [n. 14], pp. 122-23).
61. Sag Harbor Gazette (n. 8).
62. Rosemarie Garland Thomson suggests that Mary Douglas's conceptualization of cultural strategies for dealing with the "aberrant" or "anomalous" is applicable also to an analysis of the social construction of people with disabilities, a group which might also include those with chorea and those belonging to families associated with the disease. These cultural strategies include assigning the anomalous figure to one standard category or another, thereby reducing the person to one particular identifying trait, usually, but not always, the one considered "deviant"; avoiding the anomalous figure altogether through segregation or marginalization; eliminating the anomalous figure, as the modern eugenics movement attempted to do; labeling the aberrant figure as dangerous; and using anomalies in ritual "to enrich meaning or to call attention to other levels of existence." This conceptualization is useful in thinking about the ways in which a community such as East Hampton dealt with a recognized familial disorder - and perhaps with other disabilities -in their midst. While individuals might respond in idiosyncratic ways, "culture, in the sense of the public, standardized values of a community, mediates the experience of individuals. It provides in advance some basic categories, a positive pattern in which ideas and values are tidily ordered." See Mary Douglas, Purity and Danger: An Analysis of the Concepts of Pollution and Taboo (London: Routledge, 1966), pp. 40-11;
63. also Rosemarie Garland Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997), pp. 33-35.
64. At the annual town meeting in early April of each year, the white property-owning men of the town elected thirteen trustees, many of them descendants of the founding families or members of more recently arrived but wealthy or influential families such as the Huntington physicians. The trustees met throughout the year, to deal with all matters of local importance, including laying out of highways, organizing the sale of public lands, adjudicating boundary disputes, hiring teachers for the school, and assessing taxes for supporting the poor.
65. Quoted by Charles S. Stevenson, "A Biography of George Huntington, M.D.," Bull. Hist. Med., 1934, 2:53-76, quotation on p. 72.
66. See Groce, Everyone Here (n. 9), p. 40. "Bonaker" originally implied lack of sophistication and education, a pejorative term that since the 1930s has been adopted as a term of pride, indicating that one was born and raised in East Hampton.
67. Parents in unaffected families "have repeatedly been known to interdict marriage alliances between their children and those believed to be tainted with the megrim diathesis, under the severe penalties of disinheritance and social ostracism" (Lyon, "Chronic Hereditary Chorea" [n. 24], pp. 289-90).
68. Muncey, "Huntington's Chorea" (n. 14), p. 2.
69. Davenport, who wrote an influential analysis of Muncey's field material, did concede the possibility that "there is now [1916] a greater selection against marriage of persons belonging to choreic strains than formerly, or voluntary abstinence is greater" (Elizabeth B. Muncey and Charles B. Davenport, "Huntington's Chorea in Relation to Heredity and Eugenics," Am. J. Insanity 1916, 73: 195-222, on pp. 212-13).
70. Belle Ferris to Mrs. Henry, 17 December 1931. Ferris Family Papers, Greenwich Historical Society, Greenwich, Conn.
71. Lyon, "Chronic Hereditary Chorea" (n. 24), p. 289.
72. But see Audrey Tyler: "There has never been any evidence presented to the authors that at-risk persons were, or are, discriminated against in their choice of marriage partners" (Audrey Tyler, "Social and Psychological Aspects of Huntington's Disease," in Huntington's Disease, ed. Peter S. Harper, Major Problems in Neurology, no. 22 [Philadelphia: W. B. Saunders, 1991], pp. 179-203 on p. 186).
73. For example, in 1815, Hedges Miller "executed himself" with a shotgun when his father - for reasons not specified - opposed his marriage to Caroline, the woman he was engaged to marry (Jeremiah Mulford to John Dominy, 1 August 1814, Dominy Papers, LIC).
74. Cornelia Huntington, George Huntington's aunt, expressed the hope in her diary that a dear friend would not fall in love with "the charming Tuscarora invalid," suggesting the way in which race structured sexuality in nineteenth-century East Hampton, though she herself protested against such "prejudice" (Cornelia Huntington Diary, 1826, p. 9, LIC).
75. And when the parents of Ed Terbell forbade him from seeing Ella Osborne, a friend explained to her correspondent that "She is older than he is, and I suppose they want him to do better, that is more money" (Julia Parson to John Sherrill, Parson Papers, 23 March [n.y.], LIC).
76. The literature of Huntington's disease includes many claims that "the disease is particularly frequent among the lower socioeconomical strata of society" (G. W. Bruyn, "Huntington's Chorea - History, Clinical and Laboratory Synopses," in Handbook of Clinical Neurology, vol. 6, ed. P. J. Vinken and G. W. Bruyn [Amsterdam: North-Holland Publishing Co., 1968], pp. 298-378, cited on p. 304).
77. But most authors today acknowledge that the disease itself "courts a lower-class existence," since it cuts off opportunities for advancement, disturbs family life, and entails heavy burdens on relatives compelled to care for their disabled kin (Mary B. Hans and Thomas H. Gilmore, "Social Aspects of Huntington's Chorea," Am. J. Psychiatry, 1968, 114:93-98, on p. 97).
78. Nonetheless, some data suggest that the class and occupational status of affected families does not differ from that of the general population (T. Edward Reed and Joseph H. Chandler, "Huntington's Chorea in Michigan: Demography and Genetics," Am. J. Hum. Genet., 1958, 10: 201-25, on p. 213);
79. also Tyler, "Social and Psychological Aspects of Huntington's Disease" (n. 45), p. 183.
80. Addressing the eugenic expectation that families with an hereditary disorder must be poor, uneducated and abject, Davenport included a note on "Genius in Families with Huntington's Chorea,"conceding that "our family histories contain a surprisingly large number of effective men and women who have done important work in the world. This may be merely because our study has been made on three or four high-class families" (Muncey and Davenport, "Huntington's Chorea" [n. 42], p. 211).
81. Huntington, "Excerpts" (n. 14).
82. Benign tremors, benign familial chorea, and Alzheimer's disease may have been locally called St. Vitus's dance and reported as such to Muncey. It is also unclear whether Muncey consistently recorded community perceptions, or if she sometimes made her own independent diagnoses on the basis of her informants' descriptions. At the very least, Muncey indicated that she interpreted some popular names, for instance palsy and "the shakes," as indicative of Huntington's chorea, although her descriptions of symptoms sometimes suggest other disorders. Local opinions also occasionally conflicted: "There are contradictory reports of his condition," Muncey wrote of one man. "The family says he is simply nervous, but several friends say that he is beginning to show signs of chorea" (Muncey "Huntington's Chorea" [n. 14), p. B-8).
83. On differential diagnosis see Oliver Quarrell and Peter Harper, "The Clinical Neurology of Huntington's Disease," in Huntington's Disease, ed. Peter S. Harper, Major Problems in Neurology, no. 22 (Philadelphia: W. B. Saunders, 1991), pp. 67-75.
84. See Rosemarie Garland Thomson, Extraordinary Bodies (n. 37), p. 36.
85. Letitia M. Coleman, "Stigma: An Enigma Demystified," in The Disability Studies Reader, ed. Lennard J. Davis (NewYork: Routledge, 1997), pp. 216-31, on p. 225.
86. According to Sander Gilman, "How we see the diseased, the mad, the polluting is a reflex of our own sense of control and the limits inherent in that sense of control. Thus the relationship between images of disease and the representation of internalized feelings of disorder is very close" (Sander Gilman, Disease and Representation [n. 17], p. 3).
87. "The response to novel stimuli in an ambiguous situation may depend on the emotional displays of the caregiver," writes Coleman. "Self-referencing is instrumental to understanding the development of stigmatization because it may be through this process that caregivers shape young children's responses to people, especially those who possess physically salient differences" (Coleman, "Stigma" [n. 51], p. 220).
88. Joseph Osborn, a white East Hampton native, evoked this process when he recalled in his memoir the fear he associated with "an old colored man called 'Jason Hoopiter,'" [Jupiter] who would come to the kitchen for food carrying on his back "a pack, bag, or wallet, and I stood in considerable fear of him" - not, writes Osborne, from any ill nature on his part, but probably from Osborne's parents' threat "'to look out or Jason would put me in his 'bag'" (The Autobiography of Joseph Osborn, typescript, n.d., p. 3, LIC). In contrast, George Huntington's initial encounter with chorea was mediated by his physician father, who evidently explained the condition in a way that stimulated his curiosity and interest.
89. Percy R. Vessie, "Hereditary Chorea: St. Anthony's Dance and Witchcraft in Colonial Connecticut," J. Connecticut State Med. Soc., 1939, 5:596-600, quotations on pp. 596-97.
90. Vessie, "Transmission of Huntington's Chorea" (n. 10), p. 565.
91. Vessie, "Hereditary Chorea" (n. 53), p. 599.
92. In the 1960s and 1970s, Vessie's genealogies were discredited, but his allegations linking chorea with witchcraft and "criminality" continue to be cited. Moreover, his ahistorical approach to early American culture has never been challenged. See Mary B. Hans and Thomas H. Gilmore, "Huntington's Chorea and Genealogical Credibility," J. Nerv. & Ment. Dis. 1969, 147:5.
93. In 1909, George Huntington reported being told that there were "but two cases existing in Easthampton Township at present. I was greatly surprised at this, and if true, it argues that the disease is surely dying out there, a thing devoutly to be desired." Quoted by Stevenson, "A Biography of George Huntington" (n. 39), p. 72.
94. Huntington, "Excerpts" (n. 14).
95. Clarence King, "Hereditary Chorea," New York Med. Journal, 1885, 41: 468-70;
96. "Another Case of Hereditary Chorea," Med. Press of Western New York, 1885/6, 1:674-77;
97. "A Third Case of Huntington's Chorea," Med. News, 1889, 55: 39-41;
98. "Hereditary Chorea," Med. Record, 1906, 70:765-68;
99. "Hereditary Chorea," New York Med. Journal, 1916, 1040:306-98.
100. Huntington, "On Chorea" (n. 12), pp. 320-21.
101. Frances Sage to Frances Dering, 1815, Dering Papers, LIC.
102. William Osler, "Historical Note on Hereditary Chorea," in Neurographs (n. 10), p. 113;
103. William Osler, idem, "Remarks on the Varieties of Chronic Chorea, and a Report Upon Two Families of the Hereditary Form, with One Autopsy," J. Nerv. & Ment. Dis., 1893, 75:97-111;
104. William Osier to Smith Ely Jeliffe, 16 February 1905, ERO Papers.
105. Gray, Treatise (n. 15), p. 343.
106. Henry P. Hedges to George Huntington, 8 July 1908, ERO Papers.
107. Edward Osborne to Smith Ely Jeliffe, 27 May 1905, ERO Papers.
108. Another factor may have played a role, as suggested by the anthropologist Mary Douglas's analysis of thresholds of tolerance in Purity and Danger: An Analysis of Concepts of Pollution and Taboo (London: Routledge, 1966), p. 97. Douglas cites the study of a Canadian town where "behavior which a psychologist would class at once as pathological is commonly dismissed as 'Just a quirk,' or 'He'll get over it' or 'It takes all sorts to make a world.' But once a patient is admitted to a mental hospital tolerance is withdrawn." So long as St. Virus's dance, although dreaded, was considered just a "curiosity," as George Huntington described it, families may have been less self-conscious about exposing their affected members to public view. Once it became formalized in the medical literature as Huntington's chorea and attracted medical attention from figures such as William Osler, sufferers and their families may have been more uncomfortable about this scrutiny, since such descriptions, including even George Huntington's, almost always used pejorative terms such as "hereditary taint" and often included eugenic recommendations.
109. Rosenberg, "Bitter Fruit" (n. 25), pp. 223-24.
110. See also Peter J. Bowler, The Mendelian Revolution: The Emergence of Hereditarian Concepts in Modern Science and Society (Baltimore: Johns Hopkins University Press, 1989);
111. Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (Berkeley: University of California Press, 1989).
112. Martha Kaiser to Alice Wexler, 23 October 1998.
113. Philip R. Reilly, The Surgical Solution:: A History of Involuntary Sterilization in the United States (Baltimore: Johns Hopkins University Press, 1991), pp. 88-95.
114. In Breeding Better Vermonters: The Eugenics Project in the Green Mountain State (Hanover: University Press of New England, 1999), pp. 69-70,
115. Nancy L. Gallaher points out the damaging impact of the Vermont Eugenics Survey on the targeted families, making them "more visible and more vulnerable to the broader fears and prejudices within Vermont communities." Similarly, Wendy Kline observes that the objects of eugenic scrutiny may have "internalized this ideology and believes that they were unfit to reproduce. . . . By arguing that only select bodies were fit to reproduce, eugenicists added unprecedented pressure toward cultural uniformity and contributed to the increasing stigmatization of difference." See Wendy Kline, Building a Better Race: Gender, Sexuality, and Eugenics from the Turn of the Century to the Baby Boom (Berkeley and Los Angeles: University of California Press, 2001), pp. 89-91;
116. see Nicole Hahn Rafter, ed. and intro., White Trash: The Eugenic Family Studies, 1877-1919 (Boston: Northeastern University Press, 1988), for a critique of the genre of eugenic family studies.
117. Alan R. Rushton, Genetics and Medicine in the United States, 1800-1922 (Baltimore: Johns Hopkins University Press, 1994), pp. 83, 125.
118. Muncey and Davenport, "Huntington's Chorea" (n. 42), p. 212.
119. Abraham Meyerson, James B. Ayer, Tracy J. Putnam, Clyde E. Keeler, and Leo Alexander, Eugenical Sterilization: A Representation of the Problem (New York: Macmillan, 1936), p. 179.
120. Robert Proctor, Racial Hygiene: Medicine under the Nazis (Cambridge: Harvard University Press, 1988), p. 9.
121. Peter Harper and Audrey Tyler, "Genetic Counseling in Huntington's Disease," Huntington's Disease, ed. Peter S. Harper, Major Problems in Neurology, no. 22 (Philadelphia: W. B. Saunders, 1991), p. 367.
122. According to George Huntington, an "old East Hampton tradition" held that God had punished the descendants of those who had persecuted the founder of Rhode Island, Roger Wlliams, by inflicting upon them the disease of St. Vitus's dance (William Browning, "Note on the Temporal, Geographic and Racial Distribution of Huntington's Chorea," in Neurographs (n. 10), pp. 150-51.
123. This origin story has a glancing relation to genealogical fact, since the father of Leah Smith was in fact from Rhode Island. However, the "tradition" may have been invented after people forgot that it was the East Hampton-born wife of the Rhode Islander who was affected and not her husband. The story, however, served to exonerate the town of East Hampton by locating the blame outside the community. Other stories about the disease placed the origins elsewhere - for example, in Southampton: see Hedges to G. Huntington, 9 July 1908, ERO Papers. Such stories suggest local theorizing -and conversation - about the disease.
124. See King, "Hereditary Chorea" (n. 58), p. 468;
125. Helen S. Rattray, "A Village at Odds with Its Glamour," Newsday, 26 July 1999, p. A23. This origin story still has credibility, despite its lack of scientific validity, in part because it combines a traditional explanation of illness ("inbreeding") with a modern mysterious disease. However, intermarriage is mostly irrelevant to autosomal dominant disorders such as Huntington's disease, since just one copy of the deleterious gene, inherited from one parent, can cause the illness in the next generation - unlike recessive disorders, in which the child must inherit two copies of the deleterious gene, one from each parent, to actually develop the disease: since relatives are more likely than unrelated persons to share the same genes and pass them on, intermarriage does slightly increase the chance of transmitting recessive diseases to the next generation.
126. Zachary Gussow and George S. Tracy, "Stigma and the Leprosy Phenomenon: The Social History of a Disease in the Nineteenth and Twentieth Centuries," Bull. Hist. Med., 1970, 44:425-49, on p. 443.
127. Zachary Gussow and George S. Tracy, Bull. Hist. Med., Ibid., p. 440.
128. Zachary Gussow and George S. Tracy, Bull. Hist. Med., Ibid., p. 442. Many diseases have taken on the stigma of the groups that the dominant classes perceived to be most afflicted, as cholera did in its early nineteenth-century association with impoverished Irish immigrants in the United States, and syphilis with African Americans wrongly supposed to be inherently more vulnerable. In contrast, disorders such as tuberculosis, or consumption in its nineteenth-century phase, became romanticized through an association with the elite, and with the artists and poets who wrote about it. Eighteenth- and nineteenth-century nervousness, too, became linked with intellectuals and the upper classes, acquiring a certain cachet.
129. See Groce, Everyone Here (n. 9).
130. Ruth Moxey Martin, "Intermarriage of Blood Relatives in Three Old New England Communities," in Genetics, Eugenics and the Family (Papers of the 2nd International Congress of Eugenics [New York: American Museum of Natural History, 1923], 1: 278).
131. In contrast, nineteenth-century towns such as Pound Ridge and Bedford, N.Y., and Greenwich, Conn., were more racially homogeneous, with smaller numbers of people of color. In these towns, with fewer distinctions of race or religion, associations with chorea may have acquired greater salience.
132. There is also the possibility that more-affluent families were better able to hide the disease, so that neighbors actually did not know that people in certain families were affected. The number of people who did know, however, suggests to me that the knowledge was generally shared.
133. See Quarrell and Harper, "Clinical Neurology" (n. 49), pp. 50-53, on HD in the elderly.
134. Although Irving W. Lyon stressed the ostracism of affected families in the region of Pound Ridge, Greenwich, and Bedford, where he had grown up, even here the evidence is mixed. See, for example, the story of a white woman who died in Pound Ridge of "magrums" around 1800 or 1806, which was recorded sympathetically in a genealogy published in [1895]: "She was a young woman highly respected and lived to have a large family of children, but later in life was afflicted with that terrible nervous disease then known as 'magrums' (inherited as has been said from the English ancestry. . .)" (quoted in Muncey, "Huntington's Chorea" [n. 14], p. B-67).
135. Timothy Dwight, Travels in New England and New York, vol. 3, ed. Barbara Miller Solomon (Cambridge: Harvard University Press, 1969), p. 218.
136. Dwight also reported that "the hypochondria" was said to be "unusually frequent here, at Bridgehampton, and at Southampton," precisely the places where St. Vitus's dance was said to be prevalent (Dwight, Travels, p. 222).
137. Prentice Mulford, "East Hampton," Sag Harbor Corrector, 6 February 1875, n.p.
138. Peter Harper, "The Epidemiology of Huntington's Disease," in Huntington's Disease, ed. Peter S. Harper, Major Problems in Neurology, no. 22 (Philadelphia: W. B. Saunders, 1991), pp. 251-80, quotation on p. 261.
139. See Groce, Everyone Here (n. 9), p. 107.