The educational value of Child Pain, Migraine, and Invisible Disability cannot be overstated as Susan Honeyman offers novel and deep insights into the history and current state of child migraine and pain with which few will be familiar. This book is ground-breaking for several reasons, for instance Honeyman’s fearless tackling of sensitive, and for some controversial, topics such as pain medication. It takes courage to be as candid as Honeyman with minute descriptions of pain and examples of brutal attacks of migraine in the wake of head trauma sustained through interaction with other children. Honeyman draws on her own life so that the children whose stories make for such chilling reading never stand alone – an uncompromising ethical standpoint. The seriousness of terrible ideologies, policies and practices as well as teachings and what passes as expert knowledge on child migraine only occupied a vague space in my own awareness of the punitive circumstances in which children suffering from so-called invisible pain are often trapped. These circumstances continue to be far from perfect. Sadly, I will have to limit this review to the main points for me as a researcher in education and relatively new interdisciplinary disability researcher: the significant knowledge production of first-person accounts in the field of invisible disability; children as unreliable witnesses of their physical experiences of pain and suffering; society’s inadequate responses to child pain and invisible disability; the role of educators regarding inclusion and participation; and the social model of disability and impairment.
First, Susan Honeyman constructs a superb narrative about migraine as an invisible disability by drawing on her own experience of childhood and growing up as someone severely affected by migraine, yet her experience never overshadows that of the narratives by the child migraineurs whose voices she treats with great respect and tenderness. She acknowledges ‘this book is more than an academic project’ (7). It turns out to be an intelligent, compassionate and powerful call for urgent societal change for the sake of children who need and rely on adults’ preparedness to protect them because of ‘the academically unexplored experience of child migraine’ (see 1–2). Honeyman’s first-person point of departure is more than a superficial choice, it is the only ethically tenable way in which to gather evidence and produce knowledge with children who have been at the receiving end of much abuse, even by teachers. Honeyman’s voice is heard to corroborate the children who bear witness to adult bullying and multiple cruelties and injustices. From the first point it follows that child migraineurs are woefully overlooked in the literature and fields of medicine and education. In the meantime, children are afforded little understanding in educational systems that run on presenteeism and prioritise inclusion as a box-ticking exercise in the strictest technical sense. Honeyman makes a point of believing children whose empirical examples make for gruelling reading, for instance the child who is pain stricken, vomiting, barely able to sit and who is refused more than a 15-minute rest. Further insult is added by that child’s principal who derides the child migraineur in the classroom in front of all their classmates and the teacher. Such misconduct, alas, does not appear to be an exception. Scarce are narratives that place children’s suffering at the centre, and so they are often rejected as unreliable. However, Honeyman emphasises that they are frequent occurrences in every child migraineur’s life. Third, society’s responses are far from conducive to child migraineurs’ participation on their terms. Based on Honeyman’s research, there is little on offer for children whose misfortune it is not to be able to prove they are not malingerers. The empirical accounts convey children who are caught in a spiral of society’s impositions, parents’ expectations of improvement or even recovery, complicated negotiations with their peers, and misgivings or even serious doubts about their own identities and place in the world. Fourth, ‘Pain complicates expression, solidarity, and agency’ (7) sums up why formal and informal education about child pain is key to change, why educators have a vital role to play in ending the unnecessary additional suffering through stigmatising of young migraineurs. Inadequate pain medication is an especially shocking lesson to learn from this book. Until the late 1980s, many surgeries on babies, toddlers and young children were carried out without anaesthetics in the USA. It is therefore hardly surprising that even the most severely affected by migraine can expect very little in terms of pain medication whereas children diagnosed with attention deficit hyperactivity disorder (ADHD), as Honeyman points out, experience the opposite. Fifth, the social model of disability – does it work for child migraineurs and others with equally invisible conditions and illnesses? If the social model did not erase the lived experience of impairment, it would be relevant to child migraineurs. Its well-intentioned focus on the disabling effects of society do, however, overlook the often disabling effects of bodies racked with physical pain, malfunctioning intestines and aching joints. Child migraineurs as well as chronically ill people suffer from varying degrees of disabling physical effects, without the latter being an overly friendly wink at the medical model. Indeed, there can be no medical/social model dichotomy while the social model insists on an intra-dichotomous relation or interpretation of what constitutes ‘disabling’. Child migraineurs are doubly excluded from society since there are few if any accommodations made for either. As discussed previously, society does not look kindly upon children whose pain cannot be proven due to its ‘invisibility’, and children bearing witness to their suffering remain undertreated. Also, they cannot know what they do not know; that is, for the longest time, child migraineurs will grow into this world thinking their pain is normal. So even if society wanted to accommodate children in pain, it cannot, because children lack the terminology and power required to carve out a space for themselves. Inclusion of the term impairment in the social model of disability would be step in the right direction. The model works but it does require adjustments to make room for child migraineurs and other children, for instance those who are chronically ill.
In conclusion, the following quote that sums up so much of this book’s purpose:
Trigemony implies both the seeming inevitability of intractable migraine and social factors, like the misprojected suspicion of ‘faking’, that collude with it by ignoring and not adapting to the basic needs (and human rights) of child migraineurs, exacerbating pain and further isolating the child. (113)
Anyone working or living with children in pain or chronically ill children ought to read Child Pain, Migraine, and Invisible Disability. It is an urgent call to arms to support child migraineurs. Believe them, Honeyman urges us.
National Centre for Lifelong Learning, Jonkoping University, Sweden
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