Words matters: complex values beyond simple principles in disability ethics

Words significantly matter in medicine and healthcare. They are the vehicle by which individuals communicate their quandaries and symptoms to other individuals who are trained to receive these words and act upon them. Healthcare providers absorb these words to offer diagnoses, prognoses, medical advice, and care. When chosen carefully, words have the power to comfort, support, and express compassion and empathy. Words can help individuals, families and providers understand their own unique perspectives, navigate a complex ethical situation, offer a place of dialogue and convergence, and ultimately crystallize their values in a decision leading to a concrete action. However, when words become automatic, dated, or unexamined, they have the potential to stigmatize, shame, blame, exclude and manipulate. Some commonly used medical terms may negatively affect individuals and their families, and not only erode the therapeutic relationship with their providers but also decrease their trust in the healthcare system and society at large. Sharing the same vocabulary among individuals, families, and providers may help, but it is not enough. Even when the same vocabulary is used to formulate and share an argument, the underlying assumptions that give meaning to the argument may often remain hidden, ultimately failing to contribute to the accessibility of the language used and making communication problematic, unsuccessful or, worse, harmful to one or more parties involved. In light of the establishment of an ethics committee for disability and in view of a series of ethics trainings involving staff employed at several institutes catering for people living with disability, we aim to conduct an exploratory study to understand the staff's vocabulary needs when it comes to communicate about morally relevant situations. Moreover, we aim to uncover actual and likely assumptions that may be implicit in the language in use. Finally, the aim of this project is also to establish rapport and trust with the staff working at these institutions, and contribute to a long-lasting partnership with them.



Marta Fadda


Valentina Di Bernardo

Giorgia Lorenzini

Roberto Malacrida

Nicola Grignoli