What does it mean to value a life beyond its capabilities or perceived “normalcy”? How can parents navigate both accepting their child’s identity while seeking appropriate support for their disability?
In Far From the Tree, Andrew Solomon explores the complex intersection between illness and identity when parenting a child with a disability. He presents a nuanced view that balances the medical model of disability with the social model that recognizes disability as both a natural variation and a socially constructed experience.
Keep reading to discover how parents can embrace their child’s unique identity while advocating for a more inclusive world.
Parenting a Child With a Disability
The need to set aside expectations and question assumptions comes up for those who are parenting a child with a disability. Solomon explains that, though illness and identity (or cure and acceptance) might seem like opposites (or at least like mutually exclusive views of a horizontal identity), the reality is more complicated. Many traits that lead to horizontal identities, such as a physical disability, can be understood as both illness and identity. By understanding their child’s identity in both of these contexts and seeing it as a normal human variation, parents can seek to alleviate a disability while also accepting the identity.
(Shortform note: Solomon’s nuanced treatment of how illness and identity intersect builds on work by other thinkers. Like Susan Sontag in Illness as Metaphor, Solomon pushes back against oversimplified models of disability and illness. While Sontag specifically critiques the moral binary of “good and evil” that literature has constructed between health and illness, Solomon shows how traits that might be considered medical conditions can also be sources of identity and belonging. Eula Biss’s On Immunity further complements Solomon’s perspective by showing how health and disability affect not just individuals but entire communities as they shape both individual identity and our collective responsibility to create a more inclusive society.)
Solomon explains that setting aside the natural desire for normality can also prepare parents to question their assumptions about what gives a person value and what imbues their life with meaning. Disability refers to physical, mental, or developmental conditions that impair a person’s ability to function in certain areas of life. The perception of disability goes beyond the medical condition itself: Society shapes how disability is viewed and experienced. Historically, it was seen as a defect that needed to be fixed, and people with disabilities were often segregated, institutionalized, or denied basic rights and opportunities. This view stemmed from a medical model that located the “problem” of disability within the individual.
Over time, the disability rights movement has advocated instead for a social model of disability. From this perspective, disability arises not just from a person’s condition, but from the way society is structured to create barriers and prejudices against them. Being unable to walk is an impairment, but being unable to access buildings due to lack of ramps is a disability created by society. This social model sees people with disabilities as a minority facing systemic discrimination and exclusion, not just as individuals with medical problems. It calls for removing societal barriers and changing attitudes, rather than treating or curing individuals. It also recognizes disability as a natural part of human diversity and embraces it as an identity.
| How Do Parents Navigate the Medical and Social Models of Disability? The practical implications of the medical and social models of disability are significant for parents. Those operating from a medical model might focus primarily on treatments, therapies, and interventions to help their child function “normally.” In contrast, parents embracing a social model might balance medical support with advocacy for societal change, pushing for inclusive education, accessible environments, and shifts in how their child’s difference is perceived. For example, parents of a child with autism might both seek helpful therapies and work to create sensory-friendly spaces, educate others about neurodiversity, and challenge assumptions about what constitutes “normal” social interaction. Scholars also describe a third framework, the moral model, which views disability as a reflection of character, deeds, or karma. This perspective can manifest in harmful ways, such as when parents blame themselves for their child’s condition, or in oversimplified praise, such as when people call disabled children “brave” or “inspirational” without seeing their full humanity. Solomon shows how parents must often push back against these moral interpretations while developing their own understanding of their child’s disability—one that embraces both the practical challenges and the potential for meaningful identity and community. |
Solomon also confronts fundamental questions about how society values human life, particularly when discussing severe disabilities. He examines and criticizes philosopher Peter Singer’s controversial argument that not all humans qualify as “persons” deserving of moral consideration. Singer proposes measuring human value through capabilities such as self-awareness and the ability to perceive oneself over time, suggesting that infants and people with severe cognitive disabilities might not experience their lives as people in the way others do. Solomon rejects this framework for measuring human worth, showing through his interviews how it fails to capture the value in the lives and relationships of people with severe disabilities.
| Whose Life Has Value? Critics join Solomon in rejecting Singer’s arguments that people with severe cognitive disabilities might have lives of lesser value or quality—an idea that disability advocates characterize as dangerous and discriminatory. This perspective finds support in the work of thinkers such as Henri J.M. Nouwen, who argues in Adam that human value comes simply from existing in relationship with others, something every person does each day, regardless of their abilities. This understanding—that worth isn’t determined by what we can do but by who we are and how we connect with others—helps parents move beyond questions of whether their child’s life has value to focus on how to best support their child’s development and well-being. It also challenges society to create systems that support all families in caring for children with disabilities, regardless of their socioeconomic resources. |
