Whose Story is it Anyway?
Kathleen McGoldrick, Sharon Cuff & Stephanie Patterson
(Sponsored by Robert H. Smith School of Business)
Reliance on social media has increased exponentially; posts ask and answer questions, show support, and inform. Recently, traditional community supports have given way to social media reliance bringing a new meaning to peer support. With ease of access and shared experiential nature, “sharenting,” the many ways parents relate details about their children online, has become popular among parents with a disabled child. While this sharing appears harmless, it deserves a closer look. Uncensored narratives connect viewers; however, parents’ indiscriminate sharing can be manipulative in eliciting support through pity, similar to telethons seeking funding. Even if unwitting, is it possible that the quest for support has created another scenario exploiting disabled children? Parents assert that personal sharing is needed despite self-advocacy groups’ rejection of the narrative that perpetuates the stigma it creates around disability. Disclosing intimate details of a disabled child’s life, even when advocating for the child, comes at the cost of privacy and creates a permanent, international, digital footprint. Is it not imperative that disabled children’s autonomy be protected when parents utilize internet supports? How much sharing is too much, and how might boundaries be set regarding a child’s right to privacy?
Kathleen McGoldrick (she/her) is a clinical associate professor at Stony Brook University where she teaches in the Disability Studies and Human Development concentration in addition to courses in scholarly writing and research methods. She is currently PI on a study to evaluate the effectiveness of a peer mentor training program in an adaptive soccer program as well as PI on a grounded theory textual analysis of sharenting through social media posts. Some of her scholarly work includes co-authoring a chapter on sharenting in The Routledge International Handbook on Children’s Rights and Disability that is in pre-publication and is also co-author on a journal article on the intersections of disability studies and health science. In addition, she has co-authored a textbook, Research Methods in the Health Sciences. Professor McGoldrick holds a Master of Library Science from St. John’s University in NY.
Sharon Cuff (she/her) joined the Health Science faculty at Stony Brook University (SBU) in 2004 bringing 15 years of experience in not-for-profit administration to the department. While teaching, she draws upon her experience in working with people with disabilities to find employment, participating in the building of a new consumer-run agency, and developing innovative programs to bring course content to life. Professor Cuff teaches scholarly writing, Children with Disability, and oversees the student practicum and capstone of the Disability Studies and Human Development concentration. She co-authored an article, “The Intersection of Disability Studies and Health Science,” and has recently developed a program with a local Head Start program for Health Science students to perform annual vision and hearing screenings. Professor Cuff holds a Master of Social Work and a Master of Liberal Studies from SBU.
Stephanie Patterson (she/her) is a clinical associate professor at Stony Brook University. Integrating experiences in disability services and labor relations with disability studies, her primary expertise lies in the field of disability and employment. She teaches Disability and Employment, a course she created for the Disability Studies and Human Development concentration, and Professional Ethics in Healthcare for the Health Science major. Some of her research endeavors include authoring a textbook, Disability and Employment in the United States published by Cognella Inc. and co-editing a special forum on disability and employment and another on disability and shame for the Review of Disability Studies. She has written a book chapter “Working 9 to 5…or Not: Historical Origins of Disability Discrimination in the U.S. Workplace” for Disability Discrimination at the Workplace. She has also co-authored a chapter on the topic of sharenting in The Routledge International Handbook on Children’s Rights and Disability that is in prepublication; in addition to co-authoring a book chapter, “Disability, Vulnerability, and the Capacity to Consent,” in Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation published by Oxford University Press. Professor Patterson holds a Master of Liberal Studies from Stony Brook University.