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

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.