Hania Thomas-Adams, MA, CCLS
Palliative Care Child Life Specialist
UCSF Benioff Children's Hospital
In early 2020, British medical student Malone Mukwende published a medical reference text entitled
Mind the Gap: A Handbook of Clinical Signs in Black and Brown Skin. The text is short in length but immense in significance, as it was created after Mukwende recognized the lack of resources available to physicians that provide even basic guidance in identifying clinical signs in non-White skin. At its essence, this text is an active step in mitigating the pervasive structural racism of the healthcare industry, in which physicians are trained and educated within a curriculum that centers White perspectives and White bodies. In his introduction to the text, Mukwende points out that his own medical education and those of his fellow physicians included intensive training in recognizing healthy versus diseased bodies, but only used images of White bodies as the educational standards. These methods were viewed as given and immutable and thus further perpetuated as doctrine within the medical field for decades. Mukwende writes about how this traditional educational paradigm left him untrained in how to recognize common conditions in non-White bodies, leaving non-White patients at risk of being mis/over/under-diagnosed and Mukwende and his colleagues without the tools to provide sufficient treatment.
Mukwende’s text is relevant, indeed vital, to the field of child life, not as a diagnostic reference but as an example of action in the face of the structural and institutional racism that pervades the industry in which we work. It is a call to examine the ways in which our own field is built upon educational foundations that center Whiteness and Western societal standards as immutable norms. The child life profession is overwhelmingly composed of White women educated within intellectual paradigms that herald White theorists and pedagogy based on White, middle class, Western notions of what a “normal child” looks like (Koller & Wheelwright, 2020). This creates immense potential for disconnect and insensitive care when we take into consideration the census projection that non-White children will become the majority in the United States by 2050 (US Census Bureau, 2021), the myriad ways in which prototypical, healthy development can vary cross-culturally, and the detrimental impacts of systemic racism and structural inequity on development (Koller & Wheelwright, 2020). We should not continue to unquestioningly apply traditional assessment and developmental theory to all children, nor should we continue to educate child life students to so deeply engrain and perpetuate these perspectives, no more than a medical institution should develop clinical expertise using one body prototype. Failing to acknowledge and address these issues runs counter to the principles of diversity, equity, and inclusion outlined as foundations of our profession (Association of Child Life Professionals [ACLP], 2021) and does not allow us to promote health equity for the patients and families that we serve.
Child life specialists do not diagnose. We do, however, make clinical assessments. These assessments are based upon an educational foundation of child development that was taught to us during college or graduate school and continually reinforced throughout practicums, internships, and the certification exam. Traditionally, a core competency of the child life profession has been fluency in these developmental theories, and each one of us can likely remember being asked an interview question that tested our understanding of the perspectives and needs of a hospitalized child in a particular stage of development, according to a particular theorist. The term “developmentally appropriate,” used extensively in our field as a foundation for intervention and a justification for approach, is based on what can be typically expected of a presenting child within the theoretical frameworks offered by Piaget, Erickson, Bowlby, Vygotsky, and others. As a profession, child life specialists are taught to assess how significantly a child differs from what might be considered “typical”, and these assessments can have major implications for how that child is addressed, what kind of support and information they are given, and what is expected of them throughout their hospitalization.
As professionals who serve a diverse population of children and families, we must take caution not to assume that our processes of assessment are culturally neutral and universal. Each of us operates through a unique experiential lens, and as professionals we have been collectively trained within education and healthcare systems that habitually present White norms as universal norms and teach theory that is heavily dominated by White, Western voices. In Mukwende’s case, this took the form of medical texts that prepared students to recognize clinical signs in their total patient population using only White bodies and descriptive terminology applicable only to White skin. As part of our child life training, we are taught to base our assessments on theory and previous empirical findings, the vast majority of which come from White theorists using White children and families as reference. Erikson, Piaget, Ainsworth, and others made sound observations and conclusions of the children they studied but did not include cultural variation as a consideration and generally studied White children and White mother/child dyads (Woodhead, 2005).
The resulting prototype for the “developmentally appropriate child” can be considered empirically accurate to the population from which these studies were derived (i.e. White middle class children and families) but cannot and should not be unquestioningly applied to children and families from diverse backgrounds. Failure to consider this point could lead to erroneous conclusions of a child’s developmental ability based on how the child differs from the “norm,” when in fact that child’s skills and development is entirely on-track within their cultural and familial context. The opposite is also possible, in which a child could be assessed as coping well when more culturally attuned assessment would reveal them to be struggling. For example, motor skills and autonomy may develop at earlier or later times depending on societal child rearing practices, such as some cultures discouraging play on the ground, some cultures discouraging young children to feed and dress themselves, and some cultures where children are carried until they are a certain age (Swanson et al. 2003.) Social competencies have an equally wide range of norms depending on the cultural values of a particular family. Some families value individuality and assertion while others value collective good, inhibition, and deference to elders. There is wide variance cross-culturally in what can be considered typical play patterns, child/adult conversational style, emotional expression, and grief and mourning.
The unquestioned centering of White, middle-class, Western expectations of child development not only fails to acknowledge the myriad variations in developmental competencies of minority children; it also runs the risk of labeling anything other than those norms as abnormal or inferior (Garcia Coll et al. 1996). Just as only learning clinical signs on White skin can lead to mis- and under-diagnosing disease, only learning “developmentally appropriate” in the context of Western White children and theorists can lead to miscommunications and assessment errors. Fundamentally, centering Whiteness in this manner within the education and healthcare systems is a form of structural racism and cannot exist within a truly diverse, equal, and inclusive organization.
As child life specialists, we owe it to the children and families that we serve to begin to actively challenge any one-size-fits-all developmental lenses we may have within ourselves. When I examined existing articles and position statements relating to assessment in the field of child life, I found very little and sometimes zero mention of cultural variance, racism, or diversity. We can begin to change this by reading texts like Mukwende’s
Mind the Gap and articles on assessment bias and equitable assessment practices that have been growing in number in fields such as social work and early childhood education. In the Journal of Child Life, Wheelwright and Koller (2020) discuss the historical reliance on traditional developmental theory and call for a paradigm shift in how our profession is educated and a “collective commitment to do better” on behalf of the families with whom we work with. Additionally, including parents and other family members in the assessment process and ascertaining their observations and concerns can often give us a far more accurate image of the child in front of us than attempting to fit them into a prescribed theoretical model. Finally, child life specialists must turn our assessment skills inward by engaging in attuned self-reflection of our own cultural values, assumptions, and biases. As Mukwende has demonstrated, individual and collective action can make significant strides towards building the more equitable and inclusive healthcare industry that we owe to our patients and families.
REFERENCES:
Association of Child Life Professionals. ACLP: ACLP official documents. ACLP Official Documents. https://education.childlife.org/aclp.
García Coll, C., Lamberty, G,, Jenkins, R., McAdoo, H. P., Crnic, K., Wasik, B. H., Vázquez García, H. (1996). An integrative model for the study of developmental competencies in minority children. Child Development, 67(5),1891-914.
Koller, D., & Wheelwright, D. (2020). Disrupting the Status Quo: A New Theoretical Vision for the Child Life Profession. The Journal of Child Life: Psychosocial Theory and Practice, 1(2), 27-32.
Swanson, D., Spencer, M., Harpalani, V., Dupree, D., Noll, E., Ginzburg, S., & Seaton, G. (2003). Psychosocial development in racially and ethnically diverse youth: Conceptual and methodological challenges in the 21st century. Development and Psychopathology, 15(3),
743-771.
United States Census Bureau. (2021, October 8). Population Projections. https://www.census.gov/
programs-surveys/popproj.html.
Woodhead, Martin (2005). Early childhood development: A question of rights. International
Journal of Early Childhood, 37(3) pp. 79–98.