Learning to Unlearn: A Graduate Student Perspective on Intertwining Childhood Intellectual Disability, Critical Perspectives and Childhood Ethics
Written by: Rachel Reparon, PhD Candidate, Student Occupational Therapist
August 18, 2023
Learning the ropes
At the age of 13, I began working with children labeled with intellectual disability.
I was told person-first language was the best language to use to be respectful, so that is the language I used. I used the phrase ‘children with intellectual disabilities’ when referring to this group, not knowing the language I used had any real impact.
I was told inclusion of people with disabilities into the mainstream population was the best way to be helpful, so that is what I aimed to do. I endeavored to help kids with intellectual disability at a summer camp keep up with their peers by pushing them in their wheelchairs or simplifying activity instructions. The aim was to support them to do what everyone else was doing.
I was told some people with intellectual disabilities cannot speak for themselves, so I tried to help by speaking for them. At the time, it seemed to be the right thing to do to become a voice for people with intellectual disability, advocating for their best interests.
I always aimed to do what I thought was best for the children that I was working with. As I continued working with children with intellectual disability, I took extracurricular and undergraduate courses to expand my knowledge of human development, abnormal child development, risk reduction, activity adaptation, and more. I learned how to enable children with disabilities to become more ‘normal’, so that they could do the things everyone else was doing; so that they could be included. I wanted to make a positive difference, and this was the only way I was taught how. My efforts were fueled by good intentions and genuine caring.
Unlearning the ropes
As my undergraduate studies in Disability Studies progressed, I began to recognize that there can be bad effects of good intentions (Mosleh & Gibson, 2022). The field of Disability Studies is a relatively new field of study that was founded by disabled scholars. It aims to advance understandings of disability in relation to the social world and critique dominant biomedical framings of disability (Garland-Thompson, 2018). For my doctoral studies, I looked for a supervisor who could support my interests in the area of disability and found a perfect fit in Dr. Gail Teachman, an Assistant Professor within the Health and Rehabilitation Sciences program at Western University. Dr. Teachman’s research draws on Disability Studies, critical social theory, rehabilitation sciences and childhood ethics scholarship. As I embarked on my doctoral journey, I was exposed to new ways of thinking about disability that were much more nuanced and complex than I previously recognized. I now view disability as a phenomenon that is much more than a biological difference (or ‘deficit’ in biomedical terms). Disability is an idea and a social category or label that is produced through our social relations and further shaped by social, political, and cultural beliefs and values. This new way of thinking about disability prompted many questions about things that before, seemed so simple.
“Which term or label for people with disabilities is right?”, I wondered. Selecting the ‘best’ language to refer to people labeled disabled was no longer clear and simple for me. I learned that some people prefer person-first language (i.e., person with a disability) while others prefer identity-first language (i.e., disabled person) (Titchkosky, 2001), yet others with so-called differences or impairments do not identify as disabled.
“So, what do I do to help? What is the end goal if not mainstream inclusion?”, I asked myself. Deciding on the ‘best’ approach for helping disabled kids be included was no longer a straightforward process. Inclusion was not achieved by following a step-by-step formula. Nor was it an objective, measurable, and unquestioned ‘outcome’, or gold standard to aim for (Teachman, McDonough, Macarthur, Gibson, 2020). Inclusion had become quite complicated.
“So, what really are the best interests of a particular disabled child? Can I or anyone else be ‘the voice’ for disabled children? How can I be an ally in foregrounding the views, preferences and wishes of disabled children? Shouldn’t ALL children be part of determinations about their own best interests?”. I began to question assumptions I had taken-for-granted about the ‘right’ way to advocate for the best interests of disabled children. Advocacy now seemed much more complex, and I began to consider who should determine the best interests of disabled children and how their views should be elicited and accounted for (Carnevale, 2020a).
These questions were very unsettling AND equally important. These questions were saturated with layers of complexity that required me to consider how power relations shaped my past interactions. They called me to critically reflect on the social, cultural, historical, and political structures that shaped those relations. I wanted to unlearn my former ways and learn how thinking ‘otherwise’ about intellectual disability might open new understandings and offer other ways to support positive changes.
Unraveling the ropes
Learning to think critically turned nearly everything I knew about disability and childhood on its head. I had spent years building a foundation of knowledge that would end up cracking under the questions put forth by my critical lens and swallow me whole. Yet, the beauty about being swallowed whole by my own knowledge foundation, is the opportunity to be completely surrounded by the assumptions I hold and have the opportunity to think so much deeper about them now that they are right in front of me.
A critical theoretical paradigm aims to inquire ‘against the grain’, to uncover and reconstruct previously held assumptions (CQ, 2021; Guba & Lincoln, 1994). This critical paradigm served as one key tool as I worked toward rebuilding my foundation. However, one tool was insufficient for such a significant task.
The emerging field of childhood ethics served as another essential tool that I needed to inquire against the grain about intellectual disability, specifically childhood intellectual disability. The discipline of childhood ethics is concerned with the everyday ethics that pertain to the lives, decisions, participation, and experiences of young people. Childhood ethics is a field that foregrounds considerations of children’s agency, or more specifically, what agency is and how it should be recognized and promoted for young people (Carnevale, 2020a). Franco Carnevale, who has led the development of childhood ethics as a field of interdisciplinary study (Carnevale, 2020a) describes the broader concept of agency as an “active contribution to shaping [one’s] social world and to society” (2020a, p. 113) and emphasized that agency is not the same thing as individualistic autonomy, although the two are often conflated. Through my engagement with childhood ethics scholarship, I have come to understand that agency can be exercised by children, despite dominant beliefs to the contrary. Children’s agency can be seen in the ways in which young people influence the world around them by speaking and being heard and acting and being seen (Carnevale, 2021), and are thus influenced themselves.
Childhood ethics has provided new ‘thick’ conceptions of children’s voices (Carnevale, 2020b), arguing that children’s own expressions provide essential insight into understanding their best interests. Notably, I now believe that verbal speech is not a requirement to “speak and be heard”, but rather that speaking may encompass “alternative” communication such as communication aids or body language (Teachman, McDonough, Macarthur, & Gibson, 2018).
Esser et al. (2016) describe how “children often go unseen and unheard and have relatively few visible opportunities to influence society” (p. 3). Childhood ethics has provided a necessary backdrop for me to reconceptualize young people labeled intellectually disabled and to prevent myself from, unknowingly, contributing to the invisibility of disabled children. This shift is possible because childhood ethics orients me towards the importance and value of considering the moral experiences of children, which have not always been accounted for in the constructions of broader ethics that guided the ways that I had previously understood and worked with intellectually disabled children.
My engagement with disability studies and childhood ethics alongside a critical lens has allowed me to see the ways that children labeled intellectually disabled are often positioned in society as vulnerable and tragic, lacking agency, and needing charity (Phelan, 2011). While my response at the age of 13 was to accept this as “reality” and do my part by trying to help the few children with disabilities that I encountered, my response to these positionings of disabled children are different today. I now recognize that these dominant assumptions maintain a fixation on differences that are termed ‘impairments’ at the level of individual children, while neglecting the powerful social, political, and economic forces that disadvantage and oppress disabled children (Fawcett, 2016). I am beginning to understand how such dominant assumptions of children labeled intellectually disabled are largely rooted in Western biomedical ways of thinking. I am beginning to understand how such dominant assumptions, while often well intended, work their way into the treatment of and restrictions on disabled children and have the potential to exert harmful effects when left unquestioned. While I will certainly continue to learn and unlearn, I have come to recognize how good intentions really can have bad effects.
My aim here is not to scold my past ways of thinking, nor those of others who continue to think as I did. Those ways of thinking were logical within the dominant ideas, teachings, and practices that surrounded me, and continue to surround us all. It felt ‘natural’ to think that way because of the dominance of those ways of thinking in society. Rather, I share my reflections with the aim to encourage others to join me in unpacking taken-for-granted assumptions about childhood intellectual disability and consider the positive potential of thinking differently about childhood disability. While it is hard work, and defeating at times, I argue it is well worth our while to not just have good intentions, but to draw on knowledge contributed by critical scholarship, disability studies, and childhood ethics to consider the effects of our intentions and assumptions. By doing so, and in partnerships with disabled people, it might just be possible to transform our good intentions into real, impactful positive changes in the world around us.
Acknowledgements: Special thank you to Dr. Gail Teachman for providing input to this brief commentary and guidance throughout my doctoral journey. Thank you to Dr. Katie Mah for your thoughtful edits on this piece. I also wish to thank Dr. Carnevale for sharing his knowledge and guiding me through my initial steps into the field of childhood ethics. Thank you also to Cathrine George for graciously gifting her time and talents to providing the illustration for this piece.
Rachel Reparon is a PhD candidate in her third year of the combined Masters of Occupational Therapy and PhD in Occupational Science (MScOT/PhD) program. Rachel completed her undergraduate degree with a double major in Disability Studies and Family Studies and Human Development. Rachel is passionate about understanding disability within social contexts and the lived experiences of individuals with disabilities. Her research focuses on young people with intellectual and developmental disabilities, occupational possibilities, and social participation using critical qualitative approaches. Rachel is also passionate about and prioritizes spending time outside, visiting friends and family, travelling, and spending time with animals.
Looking to keep this conversation going with Rachel? You can contact her at email@example.com.
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