I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist!
Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families of children who live at home with ventilators. Franco admits that going into the study, he assumed they would be documenting primarily hardship and stress. But what he found was "a lot of the most stressful moments in life are intertwined with the things that matter the most." He titled the resulting paper: Daily Living With Distress AND Enrichment.
Do not miss this clip! Go directly to YouTube for a full-screen version. Louise