Audrey (AJ) Jones, a first year cultural anthropology doctoral student at Emory University, is conducting an ethnographic study of girls and women with Turner Syndrome.
Unlike the typical medical studies of Turner Syndrome, this study is interested in how girls and women with Turner Syndrome living in North Carolina describe themselves, interact with their communities, and participate in awareness and advocacy efforts in light of their diagnoses, with a particular focus on the experiences of short stature, stunted puberty, and infertility.
Girls and women with Turner Syndrome of all ages and demographics are welcome to participate in this study.
This study employs the ethnographic methods of participant observation and interviews. Participant observation may occur during the daily activities of participants and at Turner Syndrome community events, where the researcher will take notes as she interacts alongside participants and their communities. Interviews will be both formal and informal, and will take place in a variety of locations agreed upon by participants and the researcher.
Length of participation is flexible depending on the desires of each participants, and may span from a single 30 to 60 minute long interviews to daily interactions over the course of ten weeks.
There are no direct benefits for participants of this study. However, this research fills an important and necessary gap in understanding the individual and community experiences of girls and women with Turner Syndrome, who have been almost exclusively researched from a de-socialized medical perspective. As a result, this study may positively impact girls and women with Turner Syndrome in the future.
If you are interested in participating in this study or learning more about the research and/or researcher, please fill out the form. Your interest at this time does not commit you to this study.
Audrey (AJ) Jones is a first year doctoral student of cultural anthropology at Emory University. Her broad interests include the topics of illness and disability, medicine, gender, and the body. Her current research focuses on the communities, narrative and subjectivity formations, self-advocacy efforts, and feminist thoughts and actions of girls and women with the genetic condition Turner Syndrome. Her previous research involving interviews with women with Turner Syndrome cumulated in her undergraduate thesis, “‘I’m a friend, an aunt, an adoptive mother, a writer’: Turner Syndrome and the Contemporary American Woman,”for which she received an honorable mention from Princeton University’s anthropology department.
During the time of her undergraduate research, she also spent ten weeks writing weekly articles for the Turner Syndrome Foundation that sought to engage with new perspectives on Turner Syndrome and inspire awareness and activism. She strongly believes that academia and activism are not mutually exclusive endeavors.