Beyond fixing: Reconsidering assumptions about child‐onset impairments

In her excellent book Disfigured, Canadian author Amanda Leduc reflects on depictions of disability and difference in children's fairy tales, both as written in stories and presented in films.1 She argues that the pervasive impact of these negative representations is experienced not only by children but equally by the community at large, including parents. As we counsel families of children with child-onset impairments we have traditionally had a strong focus on therapies and interventions intended to address the children's biomedical challenges. Recommendations often include efforts (implicit if not explicit) to try to fix things, in the belief that we can do so! This clinical approach also leads us to expect parents to engage with their children as ‘therapists’. One implication of these assumptions is that we seem to be supporting a belief that the child is not good enough as they are and needs to be improved. We may thus be colluding in the idea that there are standards of normal function and structure, and that differences need to be minimized. By seeing a child's challenges as needing therapies to be applied by their parents we may also reinforce the parents' view of their child as in need of improvement. A moving story, by the mother of an 8-year-old boy born without a right hand, is both insightful and inspiring (https://archive.nytimes.com/parenting.blogs.nytimes.com/2015/05/17/giving-up-a-3-d-printed-prosthetic-for-a-different-vision-of-perfect/). Based in part on news reports of another boy whose life was apparently transformed by a 3-D printed bionic hand, she had looked forward eagerly to her son receiving a similar device. She reports her devastation when her son said, ‘I've been thinking about it … and I don't want a new hand.’ His reasoning was three-fold. First of all, he said, ‘I don't want to lose the way things feel.’ Second, he recognized and valued that he could figure out ‘how to do stuff’ his own way, noting, ‘My brain just works different (sic) because of my hand, and I think that's a good thing.’ Finally, he told his mother that ‘… my friends like me just the way I am,’ and worried that with a bionic hand other children might not want to be his friend for himself: ‘They would just want to play with my robot hand.’ His sense of social identity was very solid indeed.2 When the mother openly recognized her bias toward fixing her son, she could then identify what she had not seen in him before. Such perspectives, though not new,3 challenge us to consider once again our assumptions about what we are trying to help families achieve in raising children whose lives are affected by impairments. They encourage us to engage in a continuing process of open, honest, certainly complex, and often emotional conversations with parents. We need to share our evolving understanding of disability and self-identity, of opportunities for parenting beyond therapies, of recognizing variation in how things are done, and about celebrating children's (and families') achievements. We can also take advantage of the perspectives and experiences of the people who really know – namely parents who have been there and are willing to share what they have come to understand with the benefit of hindsight.4 Many of us have invited parents we know and trust to meet with families facing difficult decisions (e.g. to accept a gastrostomy tube to manage feeding and nutrition). Should we create services like this for all parents? However we approach these issues, it is worth reflecting on the (usually unintended) meaning of some of our traditional perspectives and advice to families, and open the field to a broader and more welcoming accommodation of differences without necessarily always seeing disability first.5 N/A.

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