The book A Life Beyond Reason: A Father's Memoir tells us about the experience of disability in a way that the models understanding of disability would not be able to exhaust. While the author, Chris Gabbard, frankly reflects on his life before and after his son's birth—matters relating to one's career aspirations, a family's mobility, medical-care complexities pre and post childbirth—it needs mentioning that this is a journey of a highly educated white family (with both parents educated to at least the master's degree level) in the United States. Although the scope of the book probably does not let Gabbard problematize this aspect aside from highlighting the economic burden of raising a child with multiple disabilities, he does talk about the effect of his spatial position. Having grown up in Silicon Valley, one of the information technology hubs of the world, and then working as an academician in a university, intellect had always mattered to Gabbard. He put it as follows: "people around me had good brains" (Gabbard, 2019, p. 116). It was due to his son August's way of life, a person with cerebral palsy, cortical visual impairment, intellectual disability and being nonverbal, that Gabbard could shift his worldview. As someone who self-admittedly bullied a schoolmate who had learning disabilities (he mentions this in an earlier 2010 essay) and could not even think of engaging with a motorised chair-using college mate, Gabbard gradually starts to understand various ways of being. But he usefully situates these reflections in the everyday and not-so-everyday experiences and decisions of his life till the time August was alive. While I would recommend the interested reader to go through Gabbard's 2010 essay in order to get a gist of his personal tussle with an earlier solidified faith in the primacy of self-reliance and rational thinking effectuated by Enlightenment thinkers (Gabbard, 2010), it is the book that provides details which effectively weaken the models categorisation of disability.
The first two chapters shed light on childbirth complications through Gabbard's narration of his wife Ilene being in labour. We find the author revisiting this period meticulously—from the hospital selection decision until the magical meeting with his baby. Chapter 2 importantly provides ground for focusing on prevention of disabling conditions as Gabbard discusses August's brain injury during labour and its subsequent effects. It is also in this chapter that one of the significant strands of the book is picked up: a family's access to state social assistance and recourse to law. Be it using the Medicaid waiver and Americans with Disabilities Act to ensure that August was reasonably accommodated in a non-complying child care centre to starting to chart the muddy terrain of a birth injury related medical negligence case, the family and the support group they had access to frame these actions as steps towards seeking justice. In Chapter 3, Gabbard further lays out the challenges of care-work with August and his sister Clio growing up. Topics like inter-state differences in Medicaid waiver programs, finding appropriate day-care facilities for their children so that the parents would be able to keep their jobs, hiring paid help, and a possible debt-ridden future are explained in the backdrop of Gabbard reconsidering his thoughts on independence—moving from John Locke to Alexis de Tocqueville and John Donne's ideas. It is in Chapters 4, 5 and 6 that we witness the father-son relationship more closely as well as finding the author growing into a disability rights supporter albeit at some distance from the dominant disability rights' movement goals. Chapter 4 is particularly important from the standpoint of understanding varied ways to communicate. This is through Gabbard giving the reader a glimpse of his and August's everyday conversations. Meanwhile, August getting the Medicaid waiver and Ilene, the second primary caregiver, suffering an injury both serve as watershed periods in these years. From Chapter 7 onward, we are led to complex issues of doctor-patient relations, specifically asymmetric information between the two parties, in the context of August's increasing spasticity and the medical intervention that it would entail. From talking about August's status as a nonverbal patient being underestimated, to the father taking recourse to Google research on the proposed line of treatment, Gabbard's narration exhibits complete honesty.
While being a very personal account, the memoir raises many medico-legal questions especially regarding disability prevention and later response to disability in healthcare practice. In light of Gabbard specifying the family's interaction with actors at multiple institutional levels for accessing services and support, the book also touches upon these actors' response to individuals with conditions such as August's and their families. These include, but are not limited to: different state governments and their functionaries, health insurance companies, healthcare workers, and teachers who were actually being disincentivized to work with children with specific disabilities in Gabbard's case. Therefore, the book would interest students and practitioners in education, healthcare, law and public policy, apart from parents, siblings and caregivers. Also, the author's reassessment of Enlightenment ideas will interest the general reader in getting a peek into the disability studies perspective, and in simply understanding the growth of a father along with his son.
- Gabbard, C. (2010, November 07). A life beyond reason. The Chronicle of Higher Education. https://www.chronicle.com/article/a-life-beyond-reason/?bc_nonce=6oyhe6678xwycda34nlzy9&cid=reg_wall_signup
- Gabbard, C. (2019). A life beyond reason: A father's memoir. Beacon Press.