Me, Stefano and multiple sclerosis: despite everything, love

Before I risk a lawsuit I want to make a disclaimer the size of a house. When I talk about abandonment, I don't mean it in an absolute sense. Somewhere and with all possible limits, the State and administrations try to follow people with disabilities. There is a big 'but' that has been bothering me for a long time but more than ever for a few days now, since I learned Paola's story. In the Italian welfare system, what happened to single disabled adults? What happens to them?

Paola's story, which recently arrived on TV, struck me in the heart and also pulverized the few certainties I had about a system that is certainly not unlimited, but which still doesn't leave you alone. And it brought back the usual question that doesn't just concern her, it also concerns me, it concerns many others. Let's go back to Paola. A lucid and combative woman, who suffers from a stormy family past and many recent losses. A sick woman in a wheelchair. A still young woman, not included in the target of residential or semi-residential for the elderly, nor in that of mental disability. But it doesn't take much, all it takes is an illness that condemns you to non-self-sufficiency and to no longer walking on your own two feet, as long as there is no Stefano present and loving in her life, and Paola finds herself abandoned. Thus it ends up that the woman finds herself living in a senior center. But it's not his place… She would still like to live in full autonomy, according to what her still young and lucid brain offers her.

It is also the story of Pedro, the sixty-year-old paraplegic uncle of Maddie, my former Peruvian assistant. Maddie lately keeps asking me, where can my uncle go? Because he is completely alone, he has no family, he is perfectly lucid and would never want to stay in an elderly center for which he also does not have the characteristics. I find myself not knowing what to say to her. And that question keeps coming back to me. If I were alone, even if only temporarily, maybe even just a handful of days when Stefano is ill or for some reason he has to be away; beyond the hours of home care, e beyond the fact that staying in a structure must certainly be the ultima ratio: where could I go? Who would take care of me? Who would wash me, dress me and manage the whole day or all the days?

There are many reasons for such a significant gap, I think. First of all, it is clear that home care is encouraged, and this is right. But taking charge of welfare with all the possible calls available, with personalized projects, with independent living, with hours of public assistance, may not exhaust the 24-hour needs of a seriously disabled and completely non-self-sufficient person. Perhaps the public body relies heavily on famous family caregivers, those who then, in other ways, treats a bit like ghosts, as Stefano and I often complain? Likely. Does that decades-old retroculture where an adult with a disability had difficulty even leaving the house out of shame weigh heavily? Let's face it, remnants of this retroculture still exist. And then there is the epidemiological factor: the sector of the elderly is preponderant and that of mental or cognitive disabilities and minors has its weight, while resources are increasingly limited. These are all plausible answers to a question that however remains there, with a huge question mark. In the total lack of family support, what happens to disabled adults?

And if we want to see it in a positive way: a point of support even during the day, light so to speak, would be a factor of social aggregation and contrast to isolation of no small importance. Another target would be created for cooperatives and all welfare entities, if we want. Perhaps it would not even be necessary to create structures from scratch: it would be enough to allocate a small part of the spaces of those already existing for the elderly, to adults, perhaps on a rotational basis and based on temporary need.

Paola's voice weighs more than anything on many questions and hypotheses: «I don't want to be here with old ninety year olds! I no longer have a social life, a history of my own, a past life and above all a future”. You couldn't have been clearer than that, dear Paola.

More stories by Vanity Fair that may interest you:

– Stefano and multiple sclerosis: my appeal to Giorgia Meloni

• I Stefano and multiple scelrosis, a parenthesis of beauty
• I Stefano and multiple sclerosis: a signature for us and for you

– Stefano and multiple sclerosis: time for fresh air

–Me, Stefano and multiple sclerosis: we are also something else

-Me, Stefano and multiple sclerosis: violated intimacy

-Me, Stefano and multiple sclerosis: the contagion

-Me, Stefano and multiple sclerosis: it was like feeling free…