Can we use consistent language to minimize childhood‐onset 'disability'?

The field of child-onset neurodisability is powerfully influenced but also confused by the language used to refer to the individuals with whom we work and their issues. Words like handicapped, disabled, and impaired are often applied inconsistently and interchangeably, creating ambiguity. Two important 21st-century influences prompt us to reconsider the use of our words. The first are the insights provided by individuals with lived experience of the disabling medical conditions familiar to us. We are encouraged to embrace the social model of disability1 that identifies the impact of forces outside the individual and their condition. The second is the World Health Organization's 2001 International Classification of Functioning, Disability and Health (ICF; https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health), reframing its 1980 International Classification of Impairments, Disabilities and Handicaps (ICIDH).2 The titles of these WHO publications, separated by only two decades, reflect evolving efforts to capture nuances of meaning. ICIDH's linear framework connected ideas showing disease causing impairments (in the body), leading to disability (in functioning), ultimately producing handicaps (social impacts). This pathway suggested how clinical activities and social policies might focus on the processes leading from one component to the next. It opened the possibility to minimize disability and handicap in order to prevent or mitigate what appeared to be the inexorable impacts of these forces, though it is not clear that idea was ever tested. With the active contribution of individuals from the disability community, the interconnected ICF framework for health linked biological, psychological, and social factors using more precise language.3 Any medical condition could create impairments (problems in body structures and/or functions); these in turn might restrict activity (the execution of a task or action). The social consequences of limitations to activity caused by factors outside the individual might affect their capability to participate in life in ways that were meaningful to them – thus creating disability.1 Personal and environmental factors remind everyone that health must be understood and evaluated within a broader context than disease alone.3, 4 Can using terminology consistently help move the field forward? Suppose everyone used these words reliably to reflect the same concept. People's impairments would always – and only – mean ‘within-the-person’ issues of body structures and functions that require clinical understanding for management. Disability would always – and only – refer to the social consequences of impairments that restrict activity or participation. Interventions directed at any component of the ICF would then have one or more specific objectives: (1) to mitigate, perhaps even remove, impairments; (2) to enhance daily activity and improve functioning, however it was achieved; and (3) to enable participation in ways meaningful to the individual. Our collective mission as health services providers would then formally expand to provide any combination of clinical, social, and political (advocacy) efforts to promote health5 and prevent disability. We'd aim to support full integration of individuals with impairments as members of society, and to mitigate ‘disability’ – the social consequence of impairments. At the community level efforts would promote services and policies that included universal design and universal access. Importantly, this proposed consistency aligns with contemporary human rights-based approaches to disability, increasing recognition of lived experience and co-production in health and social care, and the growing emphasis on participation, equity, and person-centred outcomes. In this evolving societal (and academic) context, precise language remains a powerful tool to guide research, clinical practice, and advocacy toward meaningful inclusion across the life course. Consistently framing our work with these terms would achieve several outcomes. These could include a clear statement of what our field of child-onset impairments (what some people call ‘applied child development’) seeks to achieve, and help our patients, their families, and society to see possibilities rather than limitations. Not required.