The Disability Experience: Living with a Birth Defect Resulting from Thalidomide Exposure

Authors

  • Émilie M. Meyers
  • Jeffrey W. Jutai

DOI:

https://doi.org/10.18192/riss-ijhs.v2i2.1518

Keywords:

Thalidomide, disability, disability experience, early onset disability

Abstract

The drug, Thalidomide, is a classic example of how medicine has the potential to cause us harm. The market flooding of this drug in the 1950’s resulted in the birth of 8 to 10 thousand children with birth defects. Today in Canada this tragedy still affects the lives of approximately 125 individuals. How do these individuals live their lives and what has been the overall impact of their impairment? This article explores the lived experience of a woman born with upper limb phocomelia as a result of Thalidomide exposure. A one-hour unstructured face-to-face interview was conducted. Permission was received from the interviewee to make a voice recording of the interview allowing for a more concrete data review. The interview uncovered 6 primary themes indicating that a physical impairment resulting from thalidomide can have a minimal impact on an individual’s overall quality of life, as long as sufficient support and a positive self identity is present. The interviewee’s accounts suggest that living with disability is a unique experience that can lead to positive outcomes. The ultimate conclusion of this paper is that more extensive research is needed to further represent the voices of the disability community. 

References

Annas, G. J., & Elias, S. (1999). Thalidomide and the Titanic: Reconstructing the technology tragedies of the twentieth century. American Journal of Public Health, 89(1), 98- 101. Retrieved from http://www.ncbi.nlm.gov/ pubmed/9987477

Barakat, L. P., & Linney, J. A. (1992). Children with physical handicaps and their mothers: the interrelation of social support, maternal adjustment, and child adjustment. Journal of Pediatric Psychology, 17(6), 725-739. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/1484335

Datta, D., Selvarajah, K., & Davey, N. (2004). Functional outcome of patients with proximal upper limb deficiency- acquired and congenital. Clinical Rehabilitation, 18(2), 172 -177. Retrieved from http://www.ncbi.nlm.nih.gov/ pubmed/15053126

Duffin, J. (1999). History of medicine: A scandalously short introduction (1st ed.). Toronto: University of Toronto Press.

Galvin, R. (2003). The paradox of disability culture: the need to combine versus the imperative to let go. Disability and Society, 18(5), 675-690. Retrieved from http://www.ingentaconnnect.com/content/routledg/cdso/2003/ art00008

Geersten, H. R., & Gray, R. M. (1970). Familistic orientation and inclination toward adopting the sick role. Journal of Marriage and Family, 32(4), 638-645. Retrieved from http://www.eric.ed.gov/?id=EJO31443

Gingras, G., Mongeau, M., Moreault, P., Dupuis, M., Hebert, B., & Corriveau, C. (1964). Congenial anomalies of the limbs. Canadian Medical Association Journal, 91(3), 115-119. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1927284/

Goffman, J. (1986). Notes on the management of spoiled identity (1st ed.). New York, NY: Touchtone Press.

Lenz, W. (1992). Lecture: The history of thalidomide [lecture extract]: UNITH congress. Retrieved from http://www.thalidomide.ca/history-of-thalidomide/

Smithells, R. W. & Newman, C. G. H. (1992). Recognition of thalidomide defects. Journal of Medical Genetics, 29 (10), 716-723. Retrieved from http:// www.ncbi.nlm.nih.gov/pmc/articles/PMC1016130/

O’Carroll, A., O’Reilly, F., & Whitford, D. L. (2011). What has happened to people affected by thalidomide 50 years on? Irish Journal of Medical Science, 180(2), 475-8. doi: 10.1007/s11845-011-0683-7

Olkin, R. (1999). What psychotherapists should know about disability. New York, NY: The Guilford Press.

Vanchieri, C. (1997). Preparing for thalidomide’s come-back. Annals of Internal Medicine, 127(10). 951-952. Retrieved from http://www.ncbi.nlm.nih.gov/ pubmed/9946509

Verbrugge, L. M., & Yang, L. (2002). Aging with disability and disability with aging. Journal of Disability Policy Studies, 12(4), 253-267. doi: 10.1177/1044207300201200405

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Published

2016-03-10

Issue

Vol. 2 No. 2 (2012)

Section

Articles

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