Laura is the mother of a child with autism. She is also a university professor and a disability researcher. She reflects, alongside other disability researchers, on how she cares for her disabled child and simultaneously navigates academia. Laura initially complied with ableist norms by making her struggles invisible and trialled taking on a managerial role in which she failed. During this journey, she felt indirectly disabled through her child. Over time, Laura has begun to reveal her vulnerability at work, paving the way for others towards more openness about and acceptance of challenging personal situations that influence all areas of life. We point to the permanent nature of informal caregiving for disabled family members, highlight the hidden burdens employees may carry as they comply with ableist norms and identify exposure of one’s vulnerability as a powerful tool that allows individuals to bring their whole selves to work.
Ashburn-NardoL (2018) What can allies do? In: ColellaAJKingEB (eds) Oxford Library of Psychology: The Oxford Handbook of Workplace Discrimination. New York, NY: Oxford University Press, 373–386.
3.
BainbridgeHTBroadyTR (2017) Caregiving responsibilities for a child, spouse or parent: the impact of care recipient independence on employee well-being. Journal of Vocational Behavior101: 57–66.
4.
BasslerS (2009) ‘But you don’t look sick’: a survey of scholars with chronic, invisible illnesses and their advice on how to live and work in academia. Music Theory Online 15(3 and 4).
5.
BrekkeINadimM (2017) Gendered effects of intensified care burdens: employment and sickness absence in families with chronically sick or disabled children in Norway. Work, Employment and Society31(3): 391–408.
6.
BrownMPitt-CatsouphesM (2016) A mediational model of workplace flexibility, work–family conflict, and perceived stress among caregivers of older adults. Community, Work & Family19(4): 379–395.
7.
BrownN (2020) Introduction: theorising ableism in academia. In: BrownNLeighJ (eds) Ableism in Academia: Theorising Experiences of Disabilities and Chronic Illnesses in Higher Education. London: UCL Press, 1–10.
8.
BrownNLeighJ (2018) Ableism in academia: where are the disabled and ill academics?Disability & Society33(6): 985–989.
9.
BrownNRamlackhanK (2022) Exploring experiences of ableism in academia: a constructivist inquiry. Higher Education83(6): 1225–1239.
10.
CampbellFK (2001) Inciting legal fictions: disability’s date with ontology and the ableist body of the law. Griffith Law Review10: 42–62.
11.
CampbellFK (2009) Contours of Ableism: The Production of Disability and Abledness. Basingstoke: Palgrave Macmillan.
12.
ChengSKNgLCTraylorAM, et al (2019) Helping or hurting? Understanding women’s perceptions of male allies. Personnel Assessment and Decisions5(2): 44–54.
13.
CidavZMarcusSCMandellDS (2012) Implications of childhood autism for parental employment and earnings. Pediatrics129(4): 617–623.
14.
ClancyRLFisherGGDaigleKL, et al (2020) Eldercare and work among informal caregivers: a multidisciplinary review and recommendations for future research. Journal of Business and Psychology35(1): 9–27.
15.
CollinsABurchellJRemediosC, et al (2020) Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: a cross-sectional study of caregiver-reported outcomes. Palliative Medicine34(3): 358–366.
16.
DePapeAMLindsayS (2015) Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research25(4): 569–583.
17.
DolanVL (2023) ‘. . . but if you tell anyone, I’ll deny we ever met’: the experiences of academics with invisible disabilities in the neoliberal university. International Journal of Qualitative Studies in Education36(4): 689–706.
GabrielASAllenTDDeversCE, et al (2023) A call to action: taking the untenable out of women professors’ pregnancy, postpartum, and caregiving demands. Industrial and Organizational Psychology16(2): 187–210.
21.
GatwiriKAndersonLTownsend-CrossM (2024) ‘Teaching shouldn’t feel like a combat sport’: how teaching evaluations are weaponised against minoritised academics. Race Ethnicity and Education27(2): 139–155.
22.
GérainPZechE (2021) Do informal caregivers experience more burnout? A meta-analytic study. Psychology, Health & Medicine26(2): 145–161.
23.
GreenhausJHPowellGN (2006) When work and family are allies: a theory of work-family enrichment. Academy of Management Review31(1): 72–92.
24.
HerremaRGarlandDOsborneM, et al (2017) Mental wellbeing of family members of autistic adults. Journal of Autism and Developmental Disorders47: 3589–3599.
25.
JonesEBBartunekJM (2021) Too close or optimally positioned? The value of personally relevant research. Academy of Management Perspectives35: 335–346.
26.
KayaalpAPageKJRospendaKM (2021) Caregiver burden, work-family conflict, family-work conflict, and mental health of caregivers: a mediational longitudinal study. Work & Stress35(3): 217–240.
27.
KinnearSHLinkBGBallanMS, et al (2016) Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders46: 942–953.
28.
LiAShafferJBaggerJ (2015) The psychological well-being of disability caregivers: examining the roles of family strain, family-to-work conflict, and perceived supervisor support. Journal of Occupational Health Psychology20(1): 40–49.
29.
LindsaySFuentesK (2022) It is time to address ableism in academia: a systematic review of the experiences and impact of ableism among faculty and staff. Disabilities2(2): 178–203.
30.
LourensH (2021) Supercripping the academy: the difference narrative of a disabled academic. Disability & Society36(8): 1205–1220.
31.
MarsackCNPerryTE (2018) Aging in place in every community: social exclusion experiences of parents of adult children with autism spectrum disorder. Research on Aging40(6): 535–557.
32.
Marsack-TopolewskiCNSamuelPSTarrafW (2021) Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden. PLoS One16(1): e0244844.
33.
MellifontDSmith-MerryJDickinsonH, et al (2019) The ableism elephant in the academy: a study examining academia as informed by Australian scholars with lived experience. Disability Sociology34: 1180–1199.
34.
ØsterudKLAnvikCH (2024) ‘It’s not really Michael who wears me out, it’s the system’: the hidden work of coordinating care for a disabled child. Critical Social Policy44(1): 67–86.
35.
PriceJHurleyFKiernanG (2022) ‘Managing an unexpected life – a caregiver’s career’: parents’ experience of caring for their child with a non-malignant life-limiting condition. Journal of Child Health Care28(2): 348–361.
36.
Priego-CuberoEOrgetaVLópez-MartínezC, et al (2023) The relationship between social support and anxiety symptoms in informal carers: a systematic review and meta-analysis. Journal of Clinical Medicine12(3): 1244–1259.
37.
RodgersJThorneycroftRCookPS, et al (2023) Ableism in higher education: the negation of crip temporalities within the neoliberal academy. Higher Education Research & Development42(6): 1482–1495.
38.
SchulzRSherwoodP (2008) Physical and mental health effects of family caregiving. American Journal of Nursing108(9 Suppl): 23–27.
39.
SmithJCheaterFBekkerH (2015) Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expectation18(4): 452–474.
40.
StonerJBStonerCR (2016) Career disruption: the impact of transitioning from a full-time career professional to the primary caregiver of a child with autism spectrum disorder. Focus on Autism and Other Developmental Disabilities31(2): 104–114.
41.
TurnageDConnerN (2022) Quality of life of parents of children with autism spectrum disorder: an integrative literature review. Journal for Specialists in Pediatric Nursing27(4): e12391.
