Journal of Literary & Cultural Disability Studies

A State of Flux

On Bleeding

Journal of Literary & Cultural Disability Studies (2016), 10, (3), 305–322.

Abstract

There are few non-medical reflections on haemophilia and chronic bleeding disorders (CBDs), and what there is often turn out to be wrong, outdated, or fanciful. CBDs are often hidden experiences, aside from the lack of treatment in literature, academic or not. This article re-frames CBDs through a philosophical, yet subjective, treatment that seeks to describe it as a cluster of experiences that often step outside of the bounds of the medical definition. Why have CBDs been so elusive? Partly because of their multi-layered, temporally structured, socially organized ontology, which makes them hard to define, locate, and reduce to one clear-cut perspective. Are they in the genes, in actual bleedings, in secondary disabilities, in the social adjustments involved, in iatrogenic complications; or are they to be located in the joints, the liver, or other organs that may be affected as a consequence of treatments? Do they affect individuals, families, genetic carriers, sexual partners, or even future generations? Drawing partly upon personal history, conversations, semi-structured interviews, published biographical narrations, and the shared experience of patients’ groups, the article amends some misinterpretations and captures salient aspects of this illness experience.

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Barlow, Julie. H., Jacqueline Stapley, and David R. Ellard. “Living with Haemophilia and von Willebrand’s: A Descriptive Qualitative Study.” Patient Education and Counseling 68 (2007): 235–42. Print. Living with Haemophilia and von Willebrand’s: A Descriptive Qualitative Study Patient Education and Counseling 68 235 42 Google Scholar

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Carricaburu, Danièle. L’hémophilie au risque de la médecine. De la maladie individuelle à la contamination collective par le virus du sida. Paris: Anthropos, 2000. Print. L’hémophilie au risque de la médecine. De la maladie individuelle à la contamination collective par le virus du sida Google Scholar

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Massie, Robert Jr. “The Constant Shadow: Reflections on the Life of a Chronically Ill Child.” Issues in the Care of Children with Chronic Illness. Eds. Nicholas Hobbs and James Perrin. S. Francisco-London: Jossey-Bass, 1985. 13–23. Print. The Constant Shadow: Reflections on the Life of a Chronically Ill Child Issues in the Care of Children with Chronic Illness 13 23 Google Scholar

Massie, Robert Kinloch, and Suzanne Massie. Journey. New York: Knopf, 1975. Print. Journey Google Scholar

Mol, Annemarie. The Body Multiple: Ontology in Medical Practice. Durham: Duke UP, 2002. Print. The Body Multiple: Ontology in Medical Practice Google Scholar

Mori, Piergiorgio, Elio Boeri and Ezio Casari. L’emofilico nasce sano. Pisa: Immuno, 1981. Print. L’emofilico nasce sano Google Scholar

Nicholas and Alexandra. Dir. Franklin Schaffner. Columbia Pictures, 1971. Film. Dir. Franklin Schaffner Google Scholar

Oliver, Michael. The Politics of Disablement. London: Macmillan, 1990. Print. The Politics of Disablement Google Scholar

“One Day as a Naughty Teacher” Episode 59, Candy Candy. KRO, 1977. TV. Google Scholar

Orsini, Michael. “Reframing Medical Injury? Viewing People with Hemophilia as Victims of Cultural Injustice.” Social & Legal Studies 16.2 (2007): 241–58. Print. Reframing Medical Injury? Viewing People with Hemophilia as Victims of Cultural Injustice Social & Legal Studies 16.2 241 58 Google Scholar

Palareti, Laura, and Sabrina Bertocchi. “Processo di normalizzazione e dinamiche familiari nell’emofilia.” Vite normali. Storia, realtà e immaginario dell’emofilia. Ed. Roberto Brigati and Francesca Emiliani. Bologna: Il Mulino, 2013. 191–231. Print. Processo di normalizzazione e dinamiche familiari nell’emofilia Vite normali. Storia, realtà e immaginario dell’emofilia 191 231 Google Scholar

Pemberton, Stephen. The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress. Baltimore: Johns Hopkins UP, 2011. Kindle edition. The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress Google Scholar

Pignatta, Pino and Stefano Bertone. Sangue e affari: uno scandalo internazionale nell’industria dei farmaci. Genova: Frilli, 2004. Print. Sangue e affari: uno scandalo internazionale nell’industria dei farmaci Google Scholar

Ragni, Margaret V. “Transfusion-transmitted Disease: Hepatitis C Virus Infection and Liver Transplantation.” Textbook of Hemophilia. Eds. Christine A. Lee, Erik Berntorp, and W. Keith Hoots. Oxford: Blackwell, 2005. 207–213. Print. Transfusion-transmitted Disease: Hepatitis C Virus Infection and Liver Transplantation Textbook of Hemophilia 207 213 Google Scholar

Rapp, Rayna. Testing Women, Testing the Fetus. The Social Impact of Amniocentesis in America. New York: Routledge, 2000. Print. Testing Women, Testing the Fetus. The Social Impact of Amniocentesis in America Google Scholar

Resnik, Susan. Blood Saga: Hemophilia, AIDS, and the Survival of a Community. Berkeley-Los Angeles: University of California Press, 1999. Print. Blood Saga: Hemophilia, AIDS, and the Survival of a Community Google Scholar

Rodeghiero, Francesco and Giancarlo Castaman. “Von Willebrand Disease: Epidemiology.” Textbook of Hemophilia. Eds. Christine A. Lee, Erik E. Berntorp, W. Keith Hoots. Oxford: Blackwell, 2005. 265–71. Print. Von Willebrand Disease: Epidemiology Textbook of Hemophilia 265 71 Google Scholar

Rushton, Alan R. “Leopold: The ‘Bleeder Prince’ and Public Knowledge about Hemophilia in Victorian Britain.” Journal of the History of Medicine and Allied Sciences 67.3 (2012): 457–90. Print. Leopold: The ‘Bleeder Prince’ and Public Knowledge about Hemophilia in Victorian Britain Journal of the History of Medicine and Allied Sciences 67.3 457 90 Google Scholar

The Ryan White Story. Dir. John Herzfeld. ABC, 1989. Film. Google Scholar

Shelley, Lionel. Touch Me Who Dares. Llandsyul: Gomer P, 1985. Print. Touch Me Who Dares Google Scholar

Singer, Peter. Practical Ethics. Second edition. Cambridge: Cambridge UP, 1993. Print. Practical Ethics Google Scholar

Smoak, Shelby. Bleeder: A Memoir. East Lansing: Michigan State UP, 2013 (digital edition). Web. 4 April 2016. Bleeder: A Memoir Google Scholar

Valeras, Aimee Burke. “‘We don’t have a box’: Understanding hidden disability identity utilizing narrative research methodology.” Disability Studies Quarterly 30.3/4 (2010). Web. 4 April 2016. ‘We don’t have a box’: Understanding hidden disability identity utilizing narrative research methodology Disability Studies Quarterly 30.3/4 Google Scholar

White, Ryan, and Ann Marie Cunningham. My Own Story. New York: Signet, 1992. Print. My Own Story Google Scholar

World Federation of Hemophilia. Proceedings of the WFH’s Eighth Global Forum on the Safety and Supply of Treatment for Bleeding Disorders. Montreal: WFH, 2013. Web. 2 June 2016. Proceedings of the WFH’s Eighth Global Forum on the Safety and Supply of Treatment for Bleeding Disorders Google Scholar

World Federation of Hemophilia. Report on the Annual Global Survey 2013. Montreal: WFH, 2013. Web. 2 June 2016. Google Scholar

Wysocki, Diane Kholos. “‘But Women Can’t Have Hemophilia’!: A Look at the Lives of Women with Bleeding Disorder.” Sociological Research Online 3.4 (1998). Web. 4 April 2016. ‘But Women Can’t Have Hemophilia’!: A Look at the Lives of Women with Bleeding Disorder Sociological Research Online 3.4 Google Scholar

Barlow, Julie. H., Jacqueline Stapley, and David R. Ellard. “Living with Haemophilia and von Willebrand’s: A Descriptive Qualitative Study.” Patient Education and Counseling 68 (2007): 235–42. Print. Living with Haemophilia and von Willebrand’s: A Descriptive Qualitative Study Patient Education and Counseling 68 235 42 Google Scholar

Brigati, Roberto, and Francesca Emiliani, eds. Vite normali. Storia, realtà e immaginario dell’emofilia. Bologna: Il Mulino, 2013. Print. Vite normali. Storia, realtà e immaginario dell’emofilia Google Scholar

Canguilhem, Georges. The Normal and the Pathological. Trans. Carolyn Fawcett and Robert Cohen. New York: Zone Books, 1998. Print. The Normal and the Pathological Google Scholar

Carricaburu, Danièle. L’hémophilie au risque de la médecine. De la maladie individuelle à la contamination collective par le virus du sida. Paris: Anthropos, 2000. Print. L’hémophilie au risque de la médecine. De la maladie individuelle à la contamination collective par le virus du sida Google Scholar

Cassis, Frederica, Felipe Querol, A. Forsyth and Alfonso Iorio. “Psychosocial Aspects of Haemophilia: a Systematic Review of Methodologies and Findings.” Haemophilia 18.3 (2012): e101–e14. Print. Psychosocial Aspects of Haemophilia: a Systematic Review of Methodologies and Findings Haemophilia 18.3 e101 e14 Google Scholar

Davidson, Michael. “Strange Blood: Hemophobia and the Unexplored Boundaries of Queer Nation.” Beyond the Binary: Reconstructing Cultural Identity in a Multicultural Context. Ed. T.B. Powell. New Brunswick: Rutgers UP, 1999. 39–60. Print. Strange Blood: Hemophobia and the Unexplored Boundaries of Queer Nation Beyond the Binary: Reconstructing Cultural Identity in a Multicultural Context 39 60 Google Scholar

Dilley, Anne, and Sally Crudder. “Von Willebrand Disease in Women: The Need for Recognition and Understanding.” Journal of Women’s Health & Gender-Based Medicine 8.4 (1999): 443–45. Print. Von Willebrand Disease in Women: The Need for Recognition and Understanding Journal of Women’s Health & Gender-Based Medicine 8.4 443 45 Google Scholar

The Doe Boy. Dir. Randy Redroad. Curb Entertainment, 2001. Film. Google Scholar

Emiliani, Francesca, Luca Caricati, Giannino Melotti, and Laura Palareti. Aspetti psicosociali e relazionali in famiglie con figli affetti da malattie emorragiche congenite. Research report. Bologna: Associazione Emofilici, 2005. Aspetti psicosociali e relazionali in famiglie con figli affetti da malattie emorragiche congenite Google Scholar

Ettore, Elizabeth. Reproductive Genetics, Gender, and the Body. New York: Routledge, 2002. Print. Reproductive Genetics, Gender, and the Body Google Scholar

Henry, Edmond-Luc. De l’hémophilie en général et du crime en particulier. Paris: Le Pré aux Clercs, 1992. Print. De l’hémophilie en général et du crime en particulier Google Scholar

 Google Scholar

In the Soup. Dir. Alexandre Rockwell. Mikado Films, 1992. Film. Google Scholar

Kleinman, Arthur. “Interpreting Illness Experience and Clinical Meanings: How I See Clinically Applied Anthropology.” Medical Anthropology Newsletter 16.3 (1985): 69–71. Print. Interpreting Illness Experience and Clinical Meanings: How I See Clinically Applied Anthropology Medical Anthropology Newsletter 16.3 69 71 Google Scholar

Kouides, Peter A. “Women and von Willebrand Disease.” Textbook of Hemophilia. Eds. Christine A. Lee, Erik E. Berntorp, and W. Keith Hoots. Oxford: Blackwell, 2005. 296–301. Print. Women and von Willebrand Disease Textbook of Hemophilia 296 301 Google Scholar

Legg, John Wickham. A Treatise on Haemophilia, Sometimes Called the Hereditary Haemorrhagic Diathesis. London: H.K. Lewis, 1872. Print. A Treatise on Haemophilia, Sometimes Called the Hereditary Haemorrhagic Diathesis Google Scholar

Lelli, Fabio. “Malattie emorragiche: Etica, bioetica e giustizia sanitaria.” Vite normali. Storia, realtà e immaginario dell’emofilia. Ed. Roberto Brigati and Francesca Emiliani. Bologna: Il Mulino, 2013. 259–99. Print. Malattie emorragiche: Etica, bioetica e giustizia sanitaria Vite normali. Storia, realtà e immaginario dell’emofilia 259 99 Google Scholar

Loeb Gordon, Hirsch. L’emofilia. Il morbo di Simeone Ben Gamaliele II (Secondo Secolo). Roma: Il Policlinico, 1934 (offprint, 19 pp.). Print. L’emofilia. Il morbo di Simeone Ben Gamaliele II (Secondo Secolo) Google Scholar

Marchello, Alessandro, ed. Non chiamiamolo manuale. Il programma PUER raccontato dai suoi protagonisti. Milano: Federazione delle Associazioni Emofilici, 2003. Print. Non chiamiamolo manuale. Il programma PUER raccontato dai suoi protagonisti Google Scholar

Marková, Ivana. “Dialogicità e conoscenza.” Paradigmi delle rappresentazioni sociali. Eds. Augusto Palmonari and Francesca Emiliani. Bologna: Il Mulino, 2009. 211–52. Print. Dialogicità e conoscenza Paradigmi delle rappresentazioni sociali 211 52 Google Scholar

Massie, Robert Kinloch. Nicholas and Alexandra. London: Pan Books, 1969. First edition. New York: Ballantine Books, 1967. Print. Nicholas and Alexandra Google Scholar

Massie, Robert Jr. “The Constant Shadow: Reflections on the Life of a Chronically Ill Child.” Issues in the Care of Children with Chronic Illness. Eds. Nicholas Hobbs and James Perrin. S. Francisco-London: Jossey-Bass, 1985. 13–23. Print. The Constant Shadow: Reflections on the Life of a Chronically Ill Child Issues in the Care of Children with Chronic Illness 13 23 Google Scholar

Massie, Robert Kinloch, and Suzanne Massie. Journey. New York: Knopf, 1975. Print. Journey Google Scholar

Mol, Annemarie. The Body Multiple: Ontology in Medical Practice. Durham: Duke UP, 2002. Print. The Body Multiple: Ontology in Medical Practice Google Scholar

Mori, Piergiorgio, Elio Boeri and Ezio Casari. L’emofilico nasce sano. Pisa: Immuno, 1981. Print. L’emofilico nasce sano Google Scholar

Nicholas and Alexandra. Dir. Franklin Schaffner. Columbia Pictures, 1971. Film. Dir. Franklin Schaffner Google Scholar

Oliver, Michael. The Politics of Disablement. London: Macmillan, 1990. Print. The Politics of Disablement Google Scholar

“One Day as a Naughty Teacher” Episode 59, Candy Candy. KRO, 1977. TV. Google Scholar

Orsini, Michael. “Reframing Medical Injury? Viewing People with Hemophilia as Victims of Cultural Injustice.” Social & Legal Studies 16.2 (2007): 241–58. Print. Reframing Medical Injury? Viewing People with Hemophilia as Victims of Cultural Injustice Social & Legal Studies 16.2 241 58 Google Scholar

Palareti, Laura, and Sabrina Bertocchi. “Processo di normalizzazione e dinamiche familiari nell’emofilia.” Vite normali. Storia, realtà e immaginario dell’emofilia. Ed. Roberto Brigati and Francesca Emiliani. Bologna: Il Mulino, 2013. 191–231. Print. Processo di normalizzazione e dinamiche familiari nell’emofilia Vite normali. Storia, realtà e immaginario dell’emofilia 191 231 Google Scholar

Pemberton, Stephen. The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress. Baltimore: Johns Hopkins UP, 2011. Kindle edition. The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress Google Scholar

Pignatta, Pino and Stefano Bertone. Sangue e affari: uno scandalo internazionale nell’industria dei farmaci. Genova: Frilli, 2004. Print. Sangue e affari: uno scandalo internazionale nell’industria dei farmaci Google Scholar

Ragni, Margaret V. “Transfusion-transmitted Disease: Hepatitis C Virus Infection and Liver Transplantation.” Textbook of Hemophilia. Eds. Christine A. Lee, Erik Berntorp, and W. Keith Hoots. Oxford: Blackwell, 2005. 207–213. Print. Transfusion-transmitted Disease: Hepatitis C Virus Infection and Liver Transplantation Textbook of Hemophilia 207 213 Google Scholar

Rapp, Rayna. Testing Women, Testing the Fetus. The Social Impact of Amniocentesis in America. New York: Routledge, 2000. Print. Testing Women, Testing the Fetus. The Social Impact of Amniocentesis in America Google Scholar

Resnik, Susan. Blood Saga: Hemophilia, AIDS, and the Survival of a Community. Berkeley-Los Angeles: University of California Press, 1999. Print. Blood Saga: Hemophilia, AIDS, and the Survival of a Community Google Scholar

Rodeghiero, Francesco and Giancarlo Castaman. “Von Willebrand Disease: Epidemiology.” Textbook of Hemophilia. Eds. Christine A. Lee, Erik E. Berntorp, W. Keith Hoots. Oxford: Blackwell, 2005. 265–71. Print. Von Willebrand Disease: Epidemiology Textbook of Hemophilia 265 71 Google Scholar

Rushton, Alan R. “Leopold: The ‘Bleeder Prince’ and Public Knowledge about Hemophilia in Victorian Britain.” Journal of the History of Medicine and Allied Sciences 67.3 (2012): 457–90. Print. Leopold: The ‘Bleeder Prince’ and Public Knowledge about Hemophilia in Victorian Britain Journal of the History of Medicine and Allied Sciences 67.3 457 90 Google Scholar

The Ryan White Story. Dir. John Herzfeld. ABC, 1989. Film. Google Scholar

Shelley, Lionel. Touch Me Who Dares. Llandsyul: Gomer P, 1985. Print. Touch Me Who Dares Google Scholar

Singer, Peter. Practical Ethics. Second edition. Cambridge: Cambridge UP, 1993. Print. Practical Ethics Google Scholar

Smoak, Shelby. Bleeder: A Memoir. East Lansing: Michigan State UP, 2013 (digital edition). Web. 4 April 2016. Bleeder: A Memoir Google Scholar

Valeras, Aimee Burke. “‘We don’t have a box’: Understanding hidden disability identity utilizing narrative research methodology.” Disability Studies Quarterly 30.3/4 (2010). Web. 4 April 2016. ‘We don’t have a box’: Understanding hidden disability identity utilizing narrative research methodology Disability Studies Quarterly 30.3/4 Google Scholar

White, Ryan, and Ann Marie Cunningham. My Own Story. New York: Signet, 1992. Print. My Own Story Google Scholar

World Federation of Hemophilia. Proceedings of the WFH’s Eighth Global Forum on the Safety and Supply of Treatment for Bleeding Disorders. Montreal: WFH, 2013. Web. 2 June 2016. Proceedings of the WFH’s Eighth Global Forum on the Safety and Supply of Treatment for Bleeding Disorders Google Scholar

World Federation of Hemophilia. Report on the Annual Global Survey 2013. Montreal: WFH, 2013. Web. 2 June 2016. Google Scholar

Wysocki, Diane Kholos. “‘But Women Can’t Have Hemophilia’!: A Look at the Lives of Women with Bleeding Disorder.” Sociological Research Online 3.4 (1998). Web. 4 April 2016. ‘But Women Can’t Have Hemophilia’!: A Look at the Lives of Women with Bleeding Disorder Sociological Research Online 3.4 Google Scholar

Barlow, Julie. H., Jacqueline Stapley, and David R. Ellard. “Living with Haemophilia and von Willebrand’s: A Descriptive Qualitative Study.” Patient Education and Counseling 68 (2007): 235–42. Print. Living with Haemophilia and von Willebrand’s: A Descriptive Qualitative Study Patient Education and Counseling 68 235 42 Google Scholar

Brigati, Roberto, and Francesca Emiliani, eds. Vite normali. Storia, realtà e immaginario dell’emofilia. Bologna: Il Mulino, 2013. Print. Vite normali. Storia, realtà e immaginario dell’emofilia Google Scholar

Canguilhem, Georges. The Normal and the Pathological. Trans. Carolyn Fawcett and Robert Cohen. New York: Zone Books, 1998. Print. The Normal and the Pathological Google Scholar

Carricaburu, Danièle. L’hémophilie au risque de la médecine. De la maladie individuelle à la contamination collective par le virus du sida. Paris: Anthropos, 2000. Print. L’hémophilie au risque de la médecine. De la maladie individuelle à la contamination collective par le virus du sida Google Scholar

Cassis, Frederica, Felipe Querol, A. Forsyth and Alfonso Iorio. “Psychosocial Aspects of Haemophilia: a Systematic Review of Methodologies and Findings.” Haemophilia 18.3 (2012): e101–e14. Print. Psychosocial Aspects of Haemophilia: a Systematic Review of Methodologies and Findings Haemophilia 18.3 e101 e14 Google Scholar

Davidson, Michael. “Strange Blood: Hemophobia and the Unexplored Boundaries of Queer Nation.” Beyond the Binary: Reconstructing Cultural Identity in a Multicultural Context. Ed. T.B. Powell. New Brunswick: Rutgers UP, 1999. 39–60. Print. Strange Blood: Hemophobia and the Unexplored Boundaries of Queer Nation Beyond the Binary: Reconstructing Cultural Identity in a Multicultural Context 39 60 Google Scholar

Dilley, Anne, and Sally Crudder. “Von Willebrand Disease in Women: The Need for Recognition and Understanding.” Journal of Women’s Health & Gender-Based Medicine 8.4 (1999): 443–45. Print. Von Willebrand Disease in Women: The Need for Recognition and Understanding Journal of Women’s Health & Gender-Based Medicine 8.4 443 45 Google Scholar

The Doe Boy. Dir. Randy Redroad. Curb Entertainment, 2001. Film. Google Scholar

Emiliani, Francesca, Luca Caricati, Giannino Melotti, and Laura Palareti. Aspetti psicosociali e relazionali in famiglie con figli affetti da malattie emorragiche congenite. Research report. Bologna: Associazione Emofilici, 2005. Aspetti psicosociali e relazionali in famiglie con figli affetti da malattie emorragiche congenite Google Scholar

Ettore, Elizabeth. Reproductive Genetics, Gender, and the Body. New York: Routledge, 2002. Print. Reproductive Genetics, Gender, and the Body Google Scholar

Henry, Edmond-Luc. De l’hémophilie en général et du crime en particulier. Paris: Le Pré aux Clercs, 1992. Print. De l’hémophilie en général et du crime en particulier Google Scholar

 Google Scholar

In the Soup. Dir. Alexandre Rockwell. Mikado Films, 1992. Film. Google Scholar

Kleinman, Arthur. “Interpreting Illness Experience and Clinical Meanings: How I See Clinically Applied Anthropology.” Medical Anthropology Newsletter 16.3 (1985): 69–71. Print. Interpreting Illness Experience and Clinical Meanings: How I See Clinically Applied Anthropology Medical Anthropology Newsletter 16.3 69 71 Google Scholar

Kouides, Peter A. “Women and von Willebrand Disease.” Textbook of Hemophilia. Eds. Christine A. Lee, Erik E. Berntorp, and W. Keith Hoots. Oxford: Blackwell, 2005. 296–301. Print. Women and von Willebrand Disease Textbook of Hemophilia 296 301 Google Scholar

Legg, John Wickham. A Treatise on Haemophilia, Sometimes Called the Hereditary Haemorrhagic Diathesis. London: H.K. Lewis, 1872. Print. A Treatise on Haemophilia, Sometimes Called the Hereditary Haemorrhagic Diathesis Google Scholar

Lelli, Fabio. “Malattie emorragiche: Etica, bioetica e giustizia sanitaria.” Vite normali. Storia, realtà e immaginario dell’emofilia. Ed. Roberto Brigati and Francesca Emiliani. Bologna: Il Mulino, 2013. 259–99. Print. Malattie emorragiche: Etica, bioetica e giustizia sanitaria Vite normali. Storia, realtà e immaginario dell’emofilia 259 99 Google Scholar

Loeb Gordon, Hirsch. L’emofilia. Il morbo di Simeone Ben Gamaliele II (Secondo Secolo). Roma: Il Policlinico, 1934 (offprint, 19 pp.). Print. L’emofilia. Il morbo di Simeone Ben Gamaliele II (Secondo Secolo) Google Scholar

Marchello, Alessandro, ed. Non chiamiamolo manuale. Il programma PUER raccontato dai suoi protagonisti. Milano: Federazione delle Associazioni Emofilici, 2003. Print. Non chiamiamolo manuale. Il programma PUER raccontato dai suoi protagonisti Google Scholar

Marková, Ivana. “Dialogicità e conoscenza.” Paradigmi delle rappresentazioni sociali. Eds. Augusto Palmonari and Francesca Emiliani. Bologna: Il Mulino, 2009. 211–52. Print. Dialogicità e conoscenza Paradigmi delle rappresentazioni sociali 211 52 Google Scholar

Massie, Robert Kinloch. Nicholas and Alexandra. London: Pan Books, 1969. First edition. New York: Ballantine Books, 1967. Print. Nicholas and Alexandra Google Scholar

Massie, Robert Jr. “The Constant Shadow: Reflections on the Life of a Chronically Ill Child.” Issues in the Care of Children with Chronic Illness. Eds. Nicholas Hobbs and James Perrin. S. Francisco-London: Jossey-Bass, 1985. 13–23. Print. The Constant Shadow: Reflections on the Life of a Chronically Ill Child Issues in the Care of Children with Chronic Illness 13 23 Google Scholar

Massie, Robert Kinloch, and Suzanne Massie. Journey. New York: Knopf, 1975. Print. Journey Google Scholar

Mol, Annemarie. The Body Multiple: Ontology in Medical Practice. Durham: Duke UP, 2002. Print. The Body Multiple: Ontology in Medical Practice Google Scholar

Mori, Piergiorgio, Elio Boeri and Ezio Casari. L’emofilico nasce sano. Pisa: Immuno, 1981. Print. L’emofilico nasce sano Google Scholar

Nicholas and Alexandra. Dir. Franklin Schaffner. Columbia Pictures, 1971. Film. Dir. Franklin Schaffner Google Scholar

Oliver, Michael. The Politics of Disablement. London: Macmillan, 1990. Print. The Politics of Disablement Google Scholar

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Brigati, Roberto

Crocetti, Daniela