To become chronically ill is to enter a reality inconceivable to the healthy, a reality of exclusion, from work, family, friends and the entirety of our previous existence. As someone who enjoyed what would be considered a full and successful life, experiencing chronic, debilitating disease has
transformed how I observe the world and how the world seemingly observes me. When living healthy lives we assume, not unreasonably, that we will be looked after and receive adequate healthcare. We also take the Welfare State for granted, expecting it to be there for us when required, that, as I have discovered, is a dangerous assumption.
Exclusionary practices due to chronic illness, especially in the case of contested diagnoses, are relatively hidden and often remain unchallenged. In this article, I focus on activism, participation and learning in informal settings, from the position of an academic in the field of Education and
Lifelong Learning, but also from the position of a chronically sick and disabled middle-class woman who led a life of privilege in terms of access to education, income and relative influence in public life pre-illness. In this article, I will dedicate thought to the interface of disability, activism and academia. The latter is borne by and infused with traditions dating back hundreds of years and is an institution of considerable power; one example of power is the formation of professions that are, historically, pillars of society. Higher education prepares students for careers in which they, to varying degrees, will contribute towards forming and changing society.
What students are taught, how they are taught and who teaches them is significant.
