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Me, Stefano and multiple sclerosis: a dream electoral program

It's obvious that this episode is all a dream. But since we are on the web and in social times, nothing is obvious. So the disclaimer is a must.

How beautiful, I can't believe it. We are in time for elections, for us municipal and regional elections as well as other territories, for everyone, European elections. Well finally I read in the electoral programs that disability is one of the key points. No longer a residual, niche theme, in short, for losers to avoid political correctness; but a topic in the foreground, given that all sides have realized that disability and its “induced” so to speak (cynical term to mean caregivers, families, social and economic costs of people) is gigantic, and involves a slice of the population that could very well shift the electorate. Other than “there are other priorities”, this time I hear them all talking about the topic, from my mayoral candidates to the candidates for the Umbria region to the European candidates.

I finally hear the magic word coming out of the proclamations of the parties and candidates of all colours: “more funds for healthcare and social services”. Just to point out that disabled people are not just there staring at their own navels, but embody a series of universal needs, even if more complex and specific. They say that they will allocate much more funds to healthcare and this at a regional level will translate into another magic word that I've wanted to hear for a long time: competitions!

The competitions will be unlocked and there will not be a single advertised competition for a few positions among nurses and OSS with like ten thousand candidates. Competitions will be unlocked in that virtuous chain that goes from national to regional and then territorial competences. Which means we will have more doctors – finally! – more paramedic staff – finally! – possibility for cooperatives to hire and pay qualified operators worthily for assistance to people with disabilities (this is just one of the many chapters, obviously crucial for me).

We will no longer enter desolate wards like those of Sergio Leone's films with a wild west desert, wind, dust and rolling brambles, telephones ringing endlessly and indefinitely, endless queues of patients booked for centuries, the few good doctors and willing in burnout, the few good and willing nurses even more in burnout. Or on the contrary, crowded departments that not even an Intercity Milan – Naples, with people fighting over a 20 minute visit and with posters plastered on the walls, “don't attack your doctor”. The ranks of all healthcare personnel will be replenished. And this will mean another magic word, or rather three in a row: taken charge. Finally there will be adequate care of the person! And you understand that these are issues that are anything but partisan or categorical. As well as the endless waiting lists, the untreated chronic conditions, the proliferation of private clinics… Let's see if the program is implemented but judging by the campaigns it promises very well.

At all levels of expertise there will finally be a move to reconsider the needs of a human category that until now was little more than invisible: disabled people. For example, at municipal level I will finally no longer have to find that damned sign in the most strategic places and in correspondence with lifts, tourist or panoramic places, key places in my city: “temporarily broken”. A sentence that makes my blood pressure rise to three hundred. Funds will finally be given to the PEBA, the plans for the removal of architectural barriers and the area of ​​action will be extended so that they do not involve a few small patchy islands in a city, which are also peripheral or rarely lived in. On purpose! Revised and more accessible public transport and infrastructure and above all a healthy and tough supervision – this is an 'open sky' – on the seats reserved for disabled people, or rather, why don't we increase the number a little, to the extent possible?

There are issues that have so far been ignored at all levels, in fact, perhaps the smaller ones are the only ones that have shown greater closeness to the citizen, I speak from my experience, and I am referring to the support for caregivers. Here only the municipality of Perugia deals with it with a specific notice, I thank them for this, but it is a few euros a month, a laughable figure compared to Stefano's economic and income loss. It's not their responsibility, they try to pull every rabbit out of the hat they can. But when the blanket is short… It therefore seems that they are strengthening support for caregivers (the real and certified ones, I mean) with a mix of support from municipalities, regions, and the State. I don't want to say it too loudly but it seems that we are also thinking about a definitive framework law on the subject. If you think that the most innovative law in this regard would be law 104 of 1992, we have said it all. It seems they noticed. Better late than never, huh?

I'm going a bit haphazardly but the electoral program on disability on both the left and the right is so packed that I really don't know where to start. By the way, it seems that they have finally recognized that there is no need for a ministry of disability, or for specific departments, because the needs of disabled people are those of everyone, and why create new and expensive systems who have the very easy risk of ghettoization?

Of course, it is difficult for me, who understand little or nothing about politics, to give an adequate judgment on all the programmes, because there would be so much to deal with… Let's talk about the tariff nomenclature of assistive devices, let's talk about essential levels of assistance, let's talk about the development of technology and artificial intelligence to also benefit disabled people, of real and not just declared school and university inclusion, if we cross over into welfare we are talking about training for social workers that is not bureaucratic, we are talking about listening to the person and the family and recognizing the value of what they say and live. Also because they couldn't lie on their own skin. Why lie? Ah yes, there is also that bad chapter, that of the so-called false invalids, the one that someone many years ago proclaimed they 'wanted to ferret out'. Well, there will be not only more targeted and rational controls, but also, upstream, concessions of benefits that will be much more controlled, verified, and once approved, truly congruent with the real needs of the person or family. Fantastic.

And then, last but not least, that voice there, the one so unexpected and unheard: Il respect for self-determination of the person. We will talk about sexual assistance. And listen, listen, we will start talking on both sides of the majority about the end of life! They have realized that clandestinity, open obstructionism or simply looking the other way will not prevent the suffering of the most seriously ill.

It seems that a law is finally being discussed, non-discriminatory and respectful of people's sacrosanct freedom. But I almost get excited talking about it so let's see them in action, maybe for once I won't have to fear nasty surprises from either the right or the left.

This dream is beautiful, huh? Now don't sue me, I declared from the beginning that it was a dreamand leave me alone for a bit, look, many nights I even dream of walking again… Dreams are a cure-all, a fresh shower to then set off again in the usual mud. I know, we should translate these dreams into actions and projects. There are those who do it in their own small way. Sometimes this 'little one' manages to achieve great things. But in those much trumpeted electoral programs I didn't seem to see any dream declarations.

So don't wake me up, and leave me still to my dreams. That maybe I'll swim tonight too.

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…

Source: Vanity Fair

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