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Under the headline “Hyperactivity Still Regarded as New Phenomenon­ Here,” an article published in The Irish Times in 1998 reported on a conference held at a teacher training college at which a keynote speaker asserted that “many ­ people [in Ireland] are only hearing about ADHD [attention deficit–­ hyperactivity disorder]” (McLoughlin 1998). Also reported in the article was the establishment of the first Irish ADHD ser­ vice, run by a clinical psychologist in a­ children’s hospital, and the emergence of a network of ADHD support groups around the country. That same year, a discussion took place in the upper ­ house of the Irish parliament involving the minister for health and ­ children at which the lack of popu­lar and professional recognition of the disorder and the concomitant lack of treatment ser­ vices ­ were highlighted. Relying on their own personal resources, at the time many Irish parents who suspected their ­ children had ADHD ­ were making costly diagnostic and treatment odysseys abroad. A de­ cade­ later, ADHD had been transformed from a largely institutionally unrecognized disorder to being a “­ matter of fact” and recognized as the primary reason for­ children attending the state-­ run ­ Children and Adolescent ­ Mental Health Ser­ vices (CAMHS). Widely held up as a prototypical “contested illness” and what Joe Dumit (2006: 577) referred to as an illness “you have to fight to get,” in this chapter we show how in Ireland the fight to get childhood ADHD has been won. 8 Transformations in the Irish ADHD Disorder Regime—­ from a Disorder “You Have to Fight to Get” to One “You Have to Wait to Get” Claire Edwards Órla O’Donovan Transformations in the Irish ADHD Disorder Regime   139 ADHD is now officially recognized as “the most common behavioural disorder among ­children” (Health Ser­vice Executive 2015). We argue that in the Irish context , childhood ADHD has changed from being a disorder “you have to fight to get” to being one “you have to wait to get” since lack of professional recognition has been replaced by public health care waiting lists as the main obstacle to diagnosis. Guided by Bruno Latour’s (2004) model of the social critic as one who assem­ bles rather than debunks, we explore the participants or ingredients—­ human and nonhuman—­ gathered around the ­thing ADHD that made it exist and maintain its existence specifically in the Irish context. This mix includes medical professionals , scientists, teachers, politicians, the phar­ ma­ ceu­ ti­ cal industry, ADHD treatments, drug regulation authorities, US ADHD organ­ izations, and more. In our discussion, par­ tic­ u­ lar attention is given to Irish-­ based ADHD organ­ izations and their “evidence-­ based activism” in the assemblage that gathered to state the fact of ADHD and constitute the Irish ADHD “disorder regime.” Both conceptually and empirically, our discussion draws on the Eu­ ro­ pean Union–­ funded research proj­ ect Eu­ ro­ pean Patient Organisations in Knowledge Society (EPOKS). This study investigated patients’ organ­ izations’ knowledge production activities across four conditions (ADHD, Alzheimer’s disease, rare diseases, and childbirth) and four national contexts (Ireland, the United Kingdom , France, and Portugal). “Evidence-­ based activism” is the term we use to refer to the diverse epistemic activities of ­ these patients’ organ­ izations and to capture the many forms of knowledge they mobilize (Rabeharisoa, Moreira, and Akrich 2014). The term highlights both the articulation between knowledge and politics and the work entailed in that articulation. Further features of this distinct form of health activism are the articulation of experiential and credentialed knowledge and the formation of alliances between patients’ organ­ izations and medical and scientific specialists. Documentary analy­ sis of texts published by and about the organ­ izations significantly informed our research, but fieldwork was also undertaken and included interviews with leading members and personnel , as well as attendance at conferences they or­ ga­ nized. In the first phase of this proj­ ect, which began in early 2009, we traced the histories of a number of organ­ izations. Primarily on the basis of documentary-­ archival analy­ sis, we systematically tracked the organ­ izations’ historical trajectories along a number of dimensions (e.g., cause, constituency, and web of relations). Using a common framework, for each organ­ ization we sought to identify main historical turning points and characterize public positionings. 140   Global Perspectives on ADHD Questions posed included: When and why was the organ­ ization established? As what kind of organ­ ization has it self-­ identified (e.g., self-­ help, advocacy, or “war on disease”)? What are the main...

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Additional Information

ISBN
9781421423807
Related ISBN
9781421423791
MARC Record
OCLC
1012344532
Pages
384
Launched on MUSE
2018-01-03
Language
English
Open Access
No
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