Research and Impact Initiative on Communication in Healthcare
The 3rd International E-Symposium on Communication in Health Care
"Advancing Frontiers of Health Communication Research, Education and Practice during the Pandemic"
Session 8: Communicating Sex Variation in Healthcare Settings and Beyond
Talk 1: Language and the geopolitics of sex variation
Language research into sex characteristics (in all their variation) is still a lacuna, both in terms of normative bodily categories and non-normative ones. Its central focus is on biomedicine’s tendency to contain human bodies within a dimorphic male/female construct. In the quest to navigate the rules and networks of academia, this research struggles with the risk of potentially colonizing the rest of the world outside of the ‘global centre’ of biomedical industries. That is, theories developed in the global North (from data not imagined as locally Northern) have been applied to data in ‘peripheral’ locales rather than being reframed or broadened by the ideas there encountered. This chapter asks what can be achieved when all language research into sex characteristics is framed as working locally on local data, linked not through intellectual ‘leaps’ to universalize its insights but via messy entanglements; epistemologically interdependent and mutually constitutive via cross-fertilization of ideas.
Dr. Brian W. King is a critical sociolinguist who researches the discursive performance of identities and embodiments at the intersection of ethnicity, gender and sexuality. His work on these themes sits within sexuality education, healthcare communication, computer-mediated communication, and the social construction of space/place. Methodologically he draws on a number of traditions, including interactional sociolinguistics, corpus linguistics, linguistic anthropology, and critical discourse studies. Brian leads the Communicating Sex Variation Research Cluster (CSV) in the Research and Impact Initiative on Communication in Healthcare (RIICH) an interdisciplinary, international collaboration housed in HKU's Faculty of Arts (https://www.hkuriich.org). He is a member of the board of trustees of Intersex Trust Aotearoa New Zealand (ITANZ), which strives to advocate dignity, diversity and choice for people born with intersex traits (http://www.ianz.org.nz).
Talk 2: Disorders/Differences of sex development: A preliminary nationwide study of parental experiences in China
Elaine Yin-Ling Tsui
With limited research on the issue of Disorder/ Differences of Sex Development (DSD) in Asia countries, this research investigated the concerns that Chinese parents have and the support they need, especially for parents whose children were with ambiguous genitalia. A total of 457 informants, whose children were diagnosed with either congenital adrenal hyperplasia (CAH) or x-linked adrenal hypoplasia congenita (AHC), were recruited to complete a set of online survey. Firstly, informants reflected that the number of healthcare professionals with full knowledge on DSD was limited, lack of awareness and acceptance from the community, and inadequate formal psychological support for their children. Secondly, they reported that there was limited provision of information about the condition and being confused on when, what, and how to disclose the condition to their children, especially children with ambiguous genitalia. Thirdly, parents also showed their worries in the need of their children at different developmental stage, particularly towards patients’ adolescence. Implications and recommendations will be discussed.
Dr. Elaine Tsui received her initial training in Health Psychology in University College London and was attached to Psychology and Genetic Research Group, Institute of Psychiatry, King’s College London. Her research interests include genetic counselling, healthcare counselling, reproductive health, and holistic health. She is currently working as Psychology Lecturer at Hong Kong Baptist University. This project is funded by the Research Grants Committee (RGC) of Hong Kong.
Talk 3: The human rights of children with intersex variations and their family members
This talk will give a brief overview of the human rights engaged by medical treatment on children with intersex variations (also known as differences or disorders of sex development) and the positions of UN human rights institutions. It will outline how the UN Committee on the Rights of the Child and the Committee on the Elimination of Discrimination of Women frame medical interventions based on gender stereotypes and social and cultural rationales as harmful practices. It will also outline the position of the Committee on the Rights of Persons with Disabilities on protecting the integrity of the person. Some examples will be given of rationales and types of procedure that are understood to be human rights violations [please note that some participants may find this material to be triggering]. The talk will conclude with some recommendations on protecting the rights of children and providing support to families.
Morgan Carpenter is a bioethicist and advocate working with Intersex Human Rights Australia. He participated in the first UN expert meeting on human rights violations against intersex persons in 2015. He a signatory of the Yogyakarta Principles plus 10 on the application of international human rights law in relation to sexual orientation, gender identity, gender expression and sex characteristics. He has also consulted to the OHCHR.