Doctor and parent

New and multifaceted understandings

During my pursuit of a master’s degree in rehabilitation medicine, I have been introduced to a framework central to the field: the International Classification of Functioning, Disability, and Health (ICF).¹ The ICF emphasizes the interplay of biomedical, psychological, and social components in the experience of disability and function. While it isn’t perfect, the interplay outlined in its framework is a tool that allows me to better support my children’s wellness and to have a greater appreciation of patients’ lived experiences. Compared with entrenched biomedical notions of curing difference, it offers a more multifaceted path to care.

My master’s degree work has also introduced me to important theoretical models in disability studies. The biomedical, social, and critical perspectives have, in particular, become welcome tools that help me trace and articulate the evolution of my own understanding of disability. Individually, the 3 approaches do not fully capture my experience, but together they outline a path toward more mature and nuanced understandings of my children and of disability—to think differently about difference.

The biomedical model

Western society’s thinking is dominated by the biomedical model of disability.² It posits the individual as the site of pathology, solely responsible for the disability experience.² According to this understanding, the treatment of pathology is the only way to achieve normality, which is the desired outcome and is equated with good health.¹ In partnership with experts, I was often preoccupied with fixing my children. I clung to predetermined ideas of normality, success, and achievement. This relatively simple narrative, however, leaves little room to accept difference as anything other than pathology, and I ultimately grew tired of the repeated demands to dwell on my children’s presumed deficits. In every interaction with health care providers and school staff, I watched my children be reduced to their diagnoses as they became constant treatment projects. And I saw that my children’s challenges were not fixed, but contingent on time and place.

The social model

The social model of disability, which shifts the problem of disability from the individual onto society and its barriers,³ offers a needed sense of liberation. It has come to dominate disability studies,⁴ providing a framework and the language needed to describe the oppression experienced by disabled people and bolstering self-esteem and collective identity.⁵ This model fosters a challenger approach to disability, a position where one feels compelled to fight obstructive societal forces, as often experienced in dominant medical and educational systems.

As a White, upper-middle-class professional with access to time and resources, I found it relatively easy to adopt this identity. It is empowering to gain expertise and confront dominant interpretations of disability. However, the independent fighter persona is isolating. And the pressure to focus on societal obstacles can obscure the realities of how my children’s differences contribute to erratic and uncertain days. Both the biomedical and social models provide a needed sense of control and agency; I can feel like I am doing something. However, when the fight becomes exhausting and my children’s needs and personalities get lost in the battle, the critical perspective offers something more. It leaves room for a messy, confusing, joyful, humanity-expanding understanding of disability.

Critical perspectives

Unlike the different forms of clarity offered by the biomedical and social models, critical understandings are multifaceted, relational, fluid, and generative.⁶ Critical perspectives help expand thought and practice by questioning and deconstructing how disability and normality are viewed.^4,6

Similar to how disability scholars consider critical perspectives a maturation of the field,⁷ I consider those moments that I transcend fighting the cause of disability, whether in bodily or societal terms, as a maturation. When I stop fighting, I can focus on what is rather than what should be; I can see strengths and uniqueness. Why is it considered abnormal for my son not to make eye contact, when he feels safer not doing so? Why is my daughter expected to slow down when some of her best achievements are tied to her quickness? My children have shown me that disability is fluid, that it is limiting but also generative.

Critical perspectives emphasize the precariousness of normal for everyone, not just for those who live with named disabilities. The older I get, and the more I practise medicine, the more I realize that we all move in and out of states of greater or lesser ability throughout our lives.⁸ The ambiguity of critical perspectives, and their appreciation of the tenuous nature of normal and abnormal for us all, adds depth to the clarity offered by the biomedical and social understandings.

Integrated understandings

In my clinical practice I often operate from the efficiency and clarity of the biomedical model. A focused history, physical examination, diagnosis, and treatment decisions are necessary and are part of the job. Similarly, my children’s diagnoses have been vital to my understanding and advocacy efforts. I have not abandoned the biomedical model, but I have added to it by including social and critical thought. Sometimes we need the diagnosis, other times we need the charged advocacy of the social model, but most often my children need to be seen in their wholeness. As my children and I continue to engage with health care professionals, I hope for multifaceted and nuanced approaches to care—for their difference to be viewed differently.

It has been a long road to shift from a fix-it to a fight-it to an embrace-it approach. But moving beyond the binary of normal-abnormal toward ambiguity and acceptance creates more inclusive and just interactions with difference, offering pathways to better care. Admittedly, patients who fit nicely into the clarity of the biomedical paradigm are a respite in a busy clinic day. In our more complicated interactions, we can engage tools such as the ICF, or we can weave together different understandings, such as those of the biomedical, social, and critical perspectives. With this greater ambiguity we can better see the realities of difference, distinguish oppression from difference, and be more inclusive of difference to ultimately “enlarge what it is to be human.”⁸