Making sense of ‘Intersex’ and ‘DSD’ : How laypeople understand and use terminology
Lundberg, Tove LU
; Hegarty, Peter
and Roen, Katrina
(2018)
In Psychology & Sexuality
9(2).
p.161-173
- Abstract
- Various umbrella terms refer to sex characteristics that do not fit typical binary notions of somatic sex. Key terms include Intersex, reclaimed by 1990s activists, and Disorders of Sex Development (DSD) used in medicine since 2006. Professionals across diverse disciplines express strong preferences for specific terms, making assumptions about what those terms do. Here, we draw on 10 focus group-interviews (41 participants without particular knowledge of Intersex/DSD), and semi-structured face-to-face interviews with 33 parents and 22 young people with personal experience of Intersex/DSD to examine how diverse laypeople understand and use these two umbrella terms and their alternatives. Most participants agreed that ‘DSD’ was problematic.... (More)
- Various umbrella terms refer to sex characteristics that do not fit typical binary notions of somatic sex. Key terms include Intersex, reclaimed by 1990s activists, and Disorders of Sex Development (DSD) used in medicine since 2006. Professionals across diverse disciplines express strong preferences for specific terms, making assumptions about what those terms do. Here, we draw on 10 focus group-interviews (41 participants without particular knowledge of Intersex/DSD), and semi-structured face-to-face interviews with 33 parents and 22 young people with personal experience of Intersex/DSD to examine how diverse laypeople understand and use these two umbrella terms and their alternatives. Most participants agreed that ‘DSD’ was problematic. Most young people and parents used ‘descriptive explanations’ of how the body looked or worked. Many parents and young people also found ‘Intersex’ problematic, whilst a majority of focus group participants did not. We conclude that as ‘experts by experience’, young people and their parents use language pragmatically and flexibly in everyday life to a degree that people unfamiliar with their experiences can easily underestimate. We further conclude that prescriptive discussions on terminology in this area may be needlessly constraining for people with such personal experience. (Less)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/4bb8d5d9-6430-43de-9a44-98407c536db6
- author
- Lundberg, Tove
LU
; Hegarty, Peter
and Roen, Katrina
- publishing date
- 2018-03-20
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- intersex, Disorders of sex development, terminology, medical nomenclature, language
- in
- Psychology & Sexuality
- volume
- 9
- issue
- 2
- pages
- 161 - 173
- publisher
- Taylor & Francis
- external identifiers
-
- scopus:85046875973
- ISSN
- 1941-9899
- DOI
- 10.1080/19419899.2018.1453862
- project
- The SENS project
- language
- Swedish
- LU publication?
- no
- id
- 4bb8d5d9-6430-43de-9a44-98407c536db6
- date added to LUP
- 2019-08-19 18:16:53
- date last changed
- 2022-04-26 03:31:25
@article{4bb8d5d9-6430-43de-9a44-98407c536db6,
abstract = {{Various umbrella terms refer to sex characteristics that do not fit typical binary notions of somatic sex. Key terms include Intersex, reclaimed by 1990s activists, and Disorders of Sex Development (DSD) used in medicine since 2006. Professionals across diverse disciplines express strong preferences for specific terms, making assumptions about what those terms do. Here, we draw on 10 focus group-interviews (41 participants without particular knowledge of Intersex/DSD), and semi-structured face-to-face interviews with 33 parents and 22 young people with personal experience of Intersex/DSD to examine how diverse laypeople understand and use these two umbrella terms and their alternatives. Most participants agreed that ‘DSD’ was problematic. Most young people and parents used ‘descriptive explanations’ of how the body looked or worked. Many parents and young people also found ‘Intersex’ problematic, whilst a majority of focus group participants did not. We conclude that as ‘experts by experience’, young people and their parents use language pragmatically and flexibly in everyday life to a degree that people unfamiliar with their experiences can easily underestimate. We further conclude that prescriptive discussions on terminology in this area may be needlessly constraining for people with such personal experience.}},
author = {{Lundberg, Tove and Hegarty, Peter and Roen, Katrina}},
issn = {{1941-9899}},
keywords = {{intersex; Disorders of sex development; terminology; medical nomenclature; language}},
language = {{swe}},
month = {{03}},
number = {{2}},
pages = {{161--173}},
publisher = {{Taylor & Francis}},
series = {{Psychology & Sexuality}},
title = {{Making sense of ‘Intersex’ and ‘DSD’ : How laypeople understand and use terminology}},
url = {{http://dx.doi.org/10.1080/19419899.2018.1453862}},
doi = {{10.1080/19419899.2018.1453862}},
volume = {{9}},
year = {{2018}},
}