“I have achondroplasia and I don’t feel otherwise able.” It looks like this Armanda Salvucci, president of the association for the promotion of social work, Nessunotocchimario and creator of Sensuability. On the occasion of the World day dedicated to rare diseases, which occurs on February 28, we met her (even if only online) and she told us her story but above all her commitment to change the narrative of disability.
“Mine is a rare genetic condition that affects skeletal development.
Basically, the long bones in my body don’t grow. The maximum height of a person with achondroplasia is one meter and twenty. It’s not that I’m not capable of being tall, I can’t be tall. I don’t want to be included, I live in the world like everyone else ».
In addition to living in the world, Armanda lives it fully, as the many projects she promotes and which have seen her as protagonist tell us. Among these, Sensuability created to fight prejudices and stereotypes with lightness, art and irony. «It was born from my deep need regarding the theme of sexuality and disability, which has permeated my whole life. I wanted to break down all the taboos regarding this theme across all artistic languages ​​». Sensuability is many things: a short film, a competition exhibition (Sensuability: Did mom say anything to you?) which reaches its third edition this year, and a fundraiser is underway to make a film on the theme.
Alongside the physical and daily difficulties, partly overcome thanks to various surgical interventions, Armanda still struggles today with the eyes of those who stop to scrutinize her. ““But are you from the circus?” is one of the phrases I heard and which I would certainly have done without “, says Armanda, underlining how often “the others” are the real obstacle to a peaceful existence. «As Sartre said, ‘the others are hell’. It is their look that is terrible but that also means having huge powers in a tiny living space».
His daily commitment against prejudices, Armanda also brought him live on social media within the first appointment of #TheRAREside – Stories on the edge of rarity, the Social Talk live on Facebook and YouTube wanted and created by the Osservatorio Malattie Rare (OMaR) with the aim of bringing normality into the daily story of people with rare diseases. The Social Talk will continue until March 16 every Tuesday and Thursday starting at 5:30 pm, plus an extra episode entirely dedicated to women on March 8.
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