Article by Maria Giulia Marini, Health and Wellbeing Area, Scientific Director, Epidemiologist and Counselor, President of EUNAMES, the European Narrative Medicine Society, and Editor-in-Chief of the journal “Chronicles of Narrative Medicine“.
Sustainability derives from the Latin sustinere, composed of sub, “from below”, and tenere, “to hold”: to support, uphold, carry a weight, prevent someone or something from falling. Before becoming an environmental, economic and social concept, sustainability thus denotes a concrete action: bearing a weight and helping to lighten it.
Ability derives from the Latin habilis, from habere: to be suited, fit, capable of performing a particular function. The prefix dis- indicates separation, opposition and, in some cases, deprivation. The modern word “disability” did not belong to the Roman lexicon, but its roots retain traces of an ancient functional conception. In a pragmatic society such as ancient Rome, it was important, within the army, to distinguish those who were able to march, fight and carry a load from those who were not. The risk arises when a judgement about a function becomes a judgement about the person: from “unable to do this” to “unable”, and therefore less useful.
A similar trace can be found in the English word disease, from the Old French desaise: a lack of ease, of comfort. Words preserve a binary way of classifying experience: ability/disability, health/illness, autonomy/dependence. But this oppositional thinking misses the nuances of real life. A person may have limitations in some activities and be fully competent in others, be independent in one context and need support in another. The question becomes: able to do what, in which context, with what support?
This is where disability and sustainability meet. Through active, action-oriented listening, Narrative Medicine can understand the actual burden a person carries, what makes their daily life difficult, what resources they have, which obstacles can be removed and which actions can tangibly lighten their load. Classifications describe functions and limitations; narratives reveal the person, their context and their priorities. It is then up to healthcare and welfare systems to provide practical responses.
From the Universal Declaration of Human Rights of 1948 to the UN Convention on the Rights of Persons with Disabilities of 2006, dignity, participation and rights do not depend on a person’s level of ability. The same principle runs through the 2030 Agenda: “leave no one behind”. Disability therefore concerns health, education, poverty, gender equality, decent work, reduced inequalities, accessible cities and social participation, all sustainability goals of the United Nations 2030 Agenda.
These goals remain far from being achieved, even in societies that describe themselves as “more developed”. Across Europe, there are regulations on employment inclusion, targeted job placement, quotas, incentives and protections for people with disabilities.
The difference between Northern and Southern Europe sometimes emerges in the conduct of civil society and organisations of people with disabilities: in Nordic countries, acceptance of differences is promoted from childhood. Elsewhere, a greater gap remains between rights on paper and everyday life. Here in Italy, we still see too few people with disabilities in public spaces, partly because architectural barriers and inaccessible transport tangibly limit their participation.
And complex indicators are not needed to measure sustainability: the level of civilisation is reflected in the presence of kerb ramps on pavements.
