Interview with Ubaldo Sagripanti, psychiatrist, writer, screenwriter and playwright.
How would you describe the situation today for people with disabilities in Italy and, more broadly, in Europe, both in terms of social inclusion and the availability, accessibility and quality of services?
A great deal has certainly been done over the past twenty years. I say that from a personal perspective, without claiming any great expertise, simply on the basis of what I have seen in my work. I am a psychiatrist, so I work mainly with psychiatric disabilities, but we are certainly far behind in every area of disability.
There is room for considerable progress in every field. I can speak chiefly about my own, but I want to stress one thing: if we look at the legislation in force and the guidance available, whether in national laws, the organization of mental health and care services, or provisions for municipalities, we have wonderful laws that cover just about everything. When we look at how they are implemented, however, we see a gap. Theory is one thing; practice is another.
The laws are excellent, their principles are wonderful and their provisions are extremely detailed. Then we look at reality and find that almost everything is missing.
In your field, psychiatric disability, what are the main gaps between what is provided for on paper and what actually happens?
Quite simply, care plans with dedicated staff are very scarce indeed. As a result, much is left to contracted private providers or to fully private services throughout the country. What happens is that people who can afford it receive treatment and assistance; those who cannot are left to fend for themselves. It is as simple as that.
If you look at the most recent Mental Health Protection Target Plan, you can see the staffing levels envisaged for this work. On paper, they are enormous. That takes us back to the first question.
In practice, though, things are different. We have people who depend on their families, people who sometimes have no family support at all, and municipalities trying to make up the difference with resources that are just as scarce.
We have insufficient funding and insufficient suitable residential facilities for these people, whose numbers keep growing. The situation may well get worse.
Looking at the Sustainable Development Goals and their targets on disability and inclusion, do you think they are genuinely useful for understanding what works and identifying problems, or do they risk remaining largely theoretical?
The targets and indicators are certainly very good. Taken together, they are excellent. In my view, the validity of the research tools is not in question.
What should be questioned are certain aspects of reality that do not enter into this discussion. From a health economics perspective, disability involves three fundamental categories: direct costs, tangible indirect costs and intangible indirect costs.
Direct costs are fairly easy to assess. Tangible indirect costs are harder: caregivers’ hours, lost working hours, difficulties getting to work and all the things we traditionally classify as indirect costs.
In my view, we have not adequately accounted for this burden in economic terms.
As for intangible indirect costs—pain, suffering and quality of life—we know what they are in theory, but in practice we cannot determine their actual economic impact on individuals and their caregivers.
This is a line of research that I think we should pursue more carefully: understanding how much it actually costs to support a person with a disability and how an investment in changing that person’s circumstances yields gains in domestic output. Forgive me for using such a dreadful term.
I am convinced that if we carefully assessed the real costs borne by the person, the caregiver, their wider circle and so on, and allocated resources appropriately, we would certainly see a return.
Another point is the time frame. We should look at five years, not one month. This way of thinking and doing research absolutely needs to change. It may sound strange today, but it is essential.
When we are talking about a chronic condition, we cannot look at one, three or six months: we have to look at years. Otherwise the data are ridiculous.
In your experience, what are the main needs of a person with a psychiatric disability and of their family or caregiver?
There is no general answer to that question: the response has to be tailored to the type of disability.
A blunt but effective starting point would be to consider the degree of functional impairment, for example. Whatever the diagnosis, we need a functional assessment.
For that we can use the ICF, for example, which offers excellent tools for assessing different areas: the ability to manage one’s affairs, care for oneself, relate to others, work productively and much more. The ICF provides a great many tools.
We need to consider different degrees of impairment and put suitable support in place for each person’s level of need.
Take a simple example: a person with a severe form of psychosis. Gradually, they lose the ability to care for themselves: they do not wash, dress or eat adequately, and so on.
In 80 to 90 percent of cases, or perhaps more, that person depends on the people around them. Otherwise they cannot survive. They need continuous help with taking their medication, around the clock. Even in these circumstances, appropriate treatment could improve their level of functioning.
Suppose that person has two parents, a sibling and two cousins. Two, three or four people have to devote part of each day to supporting them.
You might ask whether services are available. Yes. Someone who lives at home rather than in a residential facility can attend a day centre that supports them for a few hours, though not every day.
There is no sustainable balance of support. The burden therefore remains entirely with the family.
You might then ask what we should do: place everyone in a residential facility? Absolutely not.
If we could provide, say, an educator for at least an hour each day after the day centre, and give the family an hour of social work support every two weeks, taking account of the real difficulties faced by this person and those close to them, we could already achieve an improvement of several percentage points in their level of functioning.
The relief for the family would be almost immediate, so the gains in wellbeing could be measured even in the short term.
What role can the community play beyond public services? Are there local social networks, and what could each of us do in practical terms?
A great deal could be done.
You will be familiar with the difference between Italy’s small towns and its large cities. In a small town, it is almost natural for a neighbour, friend or acquaintance a couple of doors down to help: it is part of the local culture.
In a large city, that is no longer true. We do not even know our neighbour’s name. That is a fact.
If we then consider society’s attitude towards disability, I find it difficult to express myself. In what is essentially a narcissistic society—and I am not alone in saying so—empathetic contact with other people and their needs feels remote.
When we encounter someone living in poverty, the reaction is: “It is not my responsibility; that is their problem.” I do not want to sound curt or categorical, but social concern tends, in practice, to extend mainly to friends.
Of course, there are wonderful exceptions. Civil Protection volunteers, health volunteers and many other groups do fantastic work. But that spirit does not run throughout our society.
We need education about disability. It is missing. It is simply missing.
What role could schools play in fostering greater awareness of disability?
Here, too, we come back to what I said earlier. On paper, this is already covered; it is not absent. There are disability initiatives and commitments by teachers and school staff everywhere.
Of course it is more than adequately addressed on paper. In practice, things vary greatly from one place and one school to another.
You are right to see school as a place where citizens are educated. I cannot criticize schools as a whole. Everyone passes through school and learns there for as long as education is compulsory.
I think we need to develop ways of sharing information and experience, going beyond legal or administrative measures to encourage real reflection on disability.
That is missing. It should be an ongoing part of education.
You have also worked in theatre. Can theatre help address and communicate these issues?
It would be lovely to think so, but not very many people go to the theatre. Few people even go to see good films at the cinema, and fewer still go to the theatre.
I do not want to sound cynical, but that is the reality.
It could certainly work as a medium. There is one essential point I want to stress: we see many films, television dramas and other productions about disability, but cinema, screens, television and the media that carry this information have no flesh, no sensory presence, no smell, no tone.
When all this is embodied by an actor, in the same time and place as the audience, sharing the action with them, things change.
We need to introduce people anew to live performance and being present together, because it makes a considerable difference. This is not just my view: Vittorio Gallese also discusses it in relation to mirror neurons.
If we could do that, then yes. Why not?
What role can storytelling play? Are there experiences or practices that you consider particularly significant and potentially replicable?
Storytelling is immensely powerful. We know that it should be encouraged and shared as widely as possible.
In my own small way, I used it as a therapeutic approach in a residential setting during the COVID pandemic.
You know the Decameron? Ten young people find themselves in a country house: what do they do during the plague if not tell one another stories to pass the time?
I did something very similar with patients in a psychiatric residential community during COVID.
Ordinarily, you would expect people with disabilities and serious difficulties, cut off from the rest of the world and subjected to further isolation, to deteriorate. But they did not: with this approach they improved.
They told one another stories they had never shared before. We conducted a study using standardized measures and another group as a control, although the number of participants was, of course, very small.
That illustrates the power of storytelling.
It opened up new worlds, enabling these people to reveal parts of themselves that had remained unknown even though they had lived together for a long time.
This exploration produced greater wellbeing, measured with clinical tools. So we also have evidence supporting the effectiveness of this approach: storytelling in a therapeutic role, evaluated with standardized instruments.
I am not saying I have proved this definitively; that would be an exaggeration. I have contributed evidence for what storytelling might achieve in this respect.
To conclude, is there an issue or idea you consider important that we have not yet discussed?
As for the practical situation, I think we have covered almost everything: what exists on paper, what is missing in reality, the shortage of resources and the potentially substantial benefits to society of collective action when we take its costs into account.
What we have only touched on, and what I want to raise in closing, is the idea of a culture of disability—though it should not be a separate “culture of disability”; it should simply be culture.
Think about it for a moment. Oedipus had a disability: he was blind. And Oedipus’s blindness opens up worlds.
Thersites was hunchbacked. According to tradition, Homer was blind, yet we have his poems.
Another hugely important figure with a disability who transformed poetry was Leopardi, whose disability was severe.
Toulouse-Lautrec was another important example.
In these cases, we treat disability as an incidental historical fact. To me, that is a problem.
Instead, we should recognize it as an integral part of a person’s experience: they saw the world through their experience of disability and, through it, showed us things we do not see.
That is the immense potential of disability: it can open up new worlds to us.
Another person with a severe disability was Stephen Hawking. Did he not show us something about the universe that we could not see before?
When someone takes us as far as the event horizon, they show us something previously unseen.
Forgive me for these perhaps rather bold parallels, but that is also what Leopardi does with the hedge.
Let me tell you a little story.
I worked in Recanati for many years. I retired just a couple of weeks ago. I worked right behind the hill of L’infinito.
There is something rather striking in Recanati. On the walls by the hill, Leopardi’s entire poem L’infinito is displayed in large letters. Its opening lines say, in translation: “This solitary hill was always dear to me, and this hedge, which shuts out so much of the farthest horizon from my gaze.”
You arrive there, perhaps on a warm spring day, and sit down to read the newspaper. Inevitably a tourist comes along, looks at the view—which really is beautiful—and says, “Of course, with a view like this, how could the poet not be inspired?”
That is what happens when you do not read what is written in front of you.
Leopardi writes that the hedge shuts out much of the farthest horizon from his gaze. So what is Leopardi looking at?
The hedge.
Leopardi is looking at the hedge. He sees nothing else.
What he was looking at is written in enormous letters. We began studying it in middle school. And no one reads it.
That, I think, is the metaphor I want to offer for disability: learn to read what is right before your eyes and, from there, understand how we might reach the event horizon, perhaps through disability too.