From Chronic Health Condition to Disability Identity: Opportunities for Health Informatics Engagement

Of the millions of Americans with chronic health conditions (CHCs), a growing number are coming to identify as disabled due to their CHCs. Their definition of disability differs substantially from how health informatics has traditionally thought about disability and CHCs. Rather than seeing disability as worsening CHCs that ought to be prevented, disability community definitions see disability as a form of social difference, akin to race and gender. To understand the impact of this perspective on disability on people with CHCs, we interviewed 15 participants who identify as disabled due to their CHCs. We found that it was often difficult to develop a disability identity, but doing so had significant benefits: greater self-acceptance, accessibility, and community. We conclude by identifying opportunities for health informatics to enable more people with CHCs to develop and benefit from a disability identity.