Taking them as experts on their own experiences, Dyi Dieuwertje Huijg’s qualitative study explores how ADHD women in London live their lives on their own neurodivergent terms
Diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) at 40, I already lived with chronic conditions for 15 years and had a politicised understanding of myself as ‘disabled’. Rejecting the medical or deficiency model of disability, Nasa Begum explains that disability does not refer to “the biological condition”; rather, disability is “a form of social oppression.” We are not disabled because of our ‘condition’, but because of the “societal barriers which restrict our lives.”1 Current research about ADHD, predominantly done by non-ADHDers, offers a deficiency framework that locates ADHD in the ‘neurobiologically impaired ADHD brain’; consequently, the problems and inequalities that ADHDers experience are caused by ADHDers’ deficient behaviour and/or deficient brain – not by social oppression.
At a personal level, understanding myself as a neurobehavioural problem is not appealing, but that is what this ‘ADHD-as-deficiency framework’ offers. As a sociologist concerned with intersectionality and agency2 , I question this framework’s usefulness and accuracy on three grounds. First, it ignores the oppressive role of society and re/produces neuronormativity – i.e. norms of neurotypicality and neuroableism – rather than supporting a neurodiversity perspective. Neurodiversity is a social and analytical category that identifies neurodivergent people – e.g. ADHDers, autistics – vis-à-vis neurotypical people. Second, it re-centres the ‘white ADHD boy template’. This is despite the fact that around 2.5% of adults have ADHD3 (<25% in vulnerable populations); with a gender ratio of 1:14, an estimated 86,800 adult ADHD women live in London alone5; there is a lacuna in (qualitative) research on the interrelatedness of e.g. gender, race, class and adult ADHD. Third, there is no alternative framework for ADHD women to make sense of themselves and society. Thus, there is a significant theoretical and empirical gap in knowledge production.
This Fellowship enables me to study how ADHD women in London live their lives on their own neurodivergent terms, by developing an ‘intersectional neurodiversity framework’. As “experts on our own experiences”6, the project’s basis is ADHD women’s vantage point – including my own academic and personal observations. Employing various qualitative methods, this study explores, first, ADHD women’s own experiences with and views on (attitudinal, social, communication) barriers of marginalisation, inequality and neuronormativity and, second, how neuronormativity impacts different ADHD women differently – e.g. regarding race, sexuality, dis/ability, class, cis/trans. Finally, this study seeks to understand how ADHD women intersectionally resist the neuronormative world.
1 Begum, Nasa. (1992). "Disabled women and the feminist agenda". Feminist Review, (40), 70-84.
2 Huijg, Dieuwertje Dyi. (2020). Intersectional agency: A theoretical exploration of agency at the junction of social categories and power, based on conversations with racially privileged feminist activists from São Paulo, Brazil. (PhD thesis). University of Manchester, Manchester.
3 UKAAN. (2013). Handbook for attention deficit hyperactivity disorder in adults. UK Adult ADHD Network (UKAAN). London: Springer.
4 Kooij, J. J. S., Bijlenga, D., Salerno, L., et al. (2019). "Updated European Consensus Statement on diagnosis and treatment of adult ADHD". European Psychiatry, 56, 14-34.
5 London.gov (2018). “ONS mid-year population estimates.” Retrieved from https://data.london.gov.uk/dataset/ons-midyear-population-estimates-cust.... (Last accessed: 14/02/2020)
6 Morris, Jenny. (2001). "Impairment and disability: constructing an ethics of care that promotes human rights". Hypatia, 16(4), 1-16.
