Marta Pellizzi: “I don’t see, they don’t see me”

This article is published in issue 21 of Vanity Fair on newsstands until May 25, 2021

“For example, I don’t know what my mom looks like. I mean, I knew it, but not I remember it anymore. After years of blindness you lose your imagination, and visual memories fade. ‘

Does she keep a memory of herself?
“Not even. It was 2007 when it all started. Since then I believe to have changed a lot. How, I don’t know. But, if I touch myself, I can tell to have taken a few pounds ».

In the face of the kiletto taken, in 14 years Marta Pellizzi has lost “her sight and carefree”. Born in 1989, from Imola, daughter of a worker and a hauler, the third of four brothers, is about to graduate as a surveyor when a gradual blurring of vision and unbearable migraines they push her to investigate. The diagnosis: a “mega brain tumor”. Mega, that is, as large as one third of the skull. Emergency intervention at the Bellaria hospital in Bologna. Mass removed. Along with that goes the sight, not the desire to fight. «Since I was little», says Marta in a tone that borders on cheerfulness, «I have never left anything unfinished: a drawing, a task. Let alone if I give up now ». And in fact she survived to two “mega relapses”, before running into the third in 2019 which, for now, he is keeping under control. Meanwhile, she graduated, then graduated in Communication Sciences. Freelance as a social media strategist. He has written four books including Telegram Revolution (Dario Flaccovio Editore, 2018). And, day by day, it leads a battle against INPS which, twice, he tried to deprive her of the disability allowance.

You, today, how much is considered invalid from 1 to 10?
«I would say 10. I have lost what little visual residue I had recovered over the years. My optic nerves are completely atrophied. ‘

Is there any hope that he can recover?
“No, I’ve already tried everything: therapies, vitamins, special glasses. Nothing”.

Forever blind: scared?
“It’s my normality now. I accepted it and I don’t even miss when I could see ».

Do you really miss anything?
“Maybe the sunset. That doesn’t I can perceive it with the other senses ».

Which, I imagine, will have strengthened.
“Very. Now, if an object falls, I know where it went. If I run my hand over an embroidery, I understand the design ».

Do you understand people even better, not being able to see them?
«Let’s say that, with every new individual, I leave without the prejudices that sight inevitably carries with it. I don’t see how someone is dressed, I can’t deduce his social status o the value orientation. I speak with Mary as Mary. I concentrate on the tone of the voice, on the perfume… ».

Differences from those who, blind, was he born?
“They are more agile in their movements.”

On a character level instead?
«Because we often lose sight due to serious illnesses, perhaps we have a stronger temper. We had to cling to life ».

What did she cling to?
“At the birth of my grandchildren. I wanted to survive to be able to spend time with them ».

He did it. The price to pay, however, was an awakening in the dark.
“I didn’t realize it right away. I was too weak after the surgery. Stunned by the drugs, I couldn’t keep my eyes open. It took me a couple of months to understand. ‘

And she got angry?
“A little’. I let it through though. Above all I was sorry not to be able to go back to school ».

How stopped has it been?
“I lost a year. I graduated the following year ».

Then, in 2018 she graduated.
«Much out of course! But, come on, I apologize for myself because studying without seeing is not very easy ».

Did you learn the Braille language?
“No, until now I have leaned on my mother, who read books and notes aloud and listened to me repeat over and over ».

Somehow then his mom also graduated.
“Exactly, my discussion was very nice because it was as if we had cut that goal in two.”

Your father instead?
“He was a hauler, there was little in the house. My stick has always been her. By the way, she is the most angry about what happened to me. I try to appease her, I tell her: “Isn’t it enough for you that I have started so many projects, that it has been realized for me? What could I have done more? ”».

Do you feel satisfied?
“Yup. I would have liked to become an architect, but working in the digital world is not bad. Even if I won’t do this forever. “

What will you dedicate yourself to in the future?
“I would like to graduate in History and then become a popularizer or journalist”.

Will her mom get back on the books?
“Fortunately, now I shouldn’t have to ask her for help anymore: there are devices that, if scrolled on a sheet, reproduce the written sentences vocally. I’m inquiring to buy one: for me it would mean a small step towards independence. So I could get two more degrees. Or three! ».

Can you work and study together?
«At the moment I can’t to do neither. The third relapse exhausts me between headaches and dizziness. It is more the time in which I feel bad than the one in which I feel good ».

If it doesn’t work, how do you keep it?
“I would be entitled to an invalidity pension and an attendance allowance. At the beginning of the year, however, INPS took both of me away ».

Why?
“They judged mine to be 70 percent disability, which does not correspond to any refund. It had happened to me before ten years ago: I made an appeal and a court proved me right. “

Now what will he do?
“When the minutes of the decision arrived, I took a picture and posted it on Twitter, where I am very strong. A mess has broken out. For three days they all called me. Including Pasquale Tridico, the president of the INPS ».

To tell her?
“That they had already done so to bring my disability back to 100 percent and to give me back the corresponding pension. I replied: “Ok, what about the accompaniment?” ».

What’s the difference?
«The disability pension varies based on income: from 286 to 630 euros. The accompaniment is the same for everyone: 520 euros to pay for help ».

How much do you perceive today?
«286 euros per month. For now my mom will assist me but, one day not far away, I would like to go and live alone. I am almost 32 years old ».

What did Tridico answer you?
«That the accompaniment does not it is due to me because I have “improved”. Improved? But if I have a third recurrence and I don’t see anything! I have provided very detailed forensic documentation which cannot be interpreted in a subjective way. I only tell you that the doctor on my commission specialized in oriental medicine ».

That is?
“Ah, I don’t know what specialization it is. It certainly has nothing to do with a cancer patient ».

Next move?
“I have to appeal. And keep the attention on social media where I discovered that these things happen to many people. I also fight for them: I am a spokesperson for all the victims of incompetent and demeaning commissions ».

Dejecting?
“During the exam, they tried to humiliate me with despicable questions like:” Why did you dye your hair since you can’t see it? “. Or: “Why do you do without a guide dog and a stick?” ».

How did you reply?
«Which not all blind people opt for the same solutions. For example, I don’t want dark glasses. I’m thinking about the stick now for hygienic reasons, so as not to have to touch walls, handrails … Guide dogs, on the other hand, are not for me: it is a journey that lasts at least a year and a half and for months you have to live in the training center. I have other projects ».

In addition to the second degree think ever to a family of his?
“Honestly no. Maybe because I’ve never met the right person ».

Not even a friend who would pique his interest?
“I have no friends. I have many acquaintances, colleagues, people with which I feel good. Friends no ».

She hasn’t stayed in touch with the high school classmates?
“Someone, over the years, has sent me a text message on social media. Nothing special. I don’t blame anyone though: we were 18 when the disaster overwhelmed me. There is that, at that age, they stepped aside. There is that they no longer called me ».

By the way, even the president of the Emilia-Romagna Region when she blew up the case on Twitter, he promised to call her. Did he then do it?
“Bonaccini? I am still waiting for it ».

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