“When I found out I was stunned. It was clear that it was #rare but I didn’t think so rare. After a while I began to realize that you are rare, but there are also many rare diseases. The cool thing is that at a certain point you start to feel you #sexy, in the American sense of the term. Doctors look at you curiously, the specialists can’t wait to explore under your eye. You laugh, a smile for every time you cried. I have a big karmic debt in smiles. At the moment I have cried more than I smiled. I think I will smile today today, tomorrow, the day after tomorrow. I hope I will not stop. #ifeelsexy ”
Category: Technology & Research
Being blind means having dinner with a packet of crackers because you have not found someone to accompany you to the grocery store. This is…
When I was 18 years I was diagnosed with Usher Syndrome and it took me another eighteen years to understand which were the consequences of this disease and realize that it is one of the main causes of deaf blindness.
The level of hearing loss and low vision still allows me to have a quite normal communication despite when I don’t succeed in reading lips or when the volume of the telecomunication devices is not adequate.
I have already written about the difficulties that hearing impaired can have nowadays during this pandemic caused by Coronavirus.
Today, in this article, I want to talk about the sense of touch.
This sense is very important for deaf blind people because it allows them to communicate.
If you have never seen how it is possible to communicate with the tactile sign language you can watch this video
As far as the actual social restrictions of quarantine are concerned, it’s obvious that some actions and facilities should be granted to deaf blind people otherwise they wouldn’t be able to live and survive.
Perhaps they would use gloves or they would wash their hands carefully.
Gli uomini possono chiudere gli occhi davanti alla grandezza, davanti all’orrore, e turarsi le orecchie davanti a melodie o a parole seducenti. Ma non possono sottrarsi al profumo. Poiché il profumo è fratello del respiro. Con esso penetrava gli uomini, a esso non potevano resistere, se volevano vivere. E il profumo scendeva in loro, direttamente al cuore e là distingueva categoricamente la simpatia dal disprezzo, il disgusto dal piacere, l’amore dall’odio. Colui che dominava gli odori, dominava il cuore degli uomini.
Patrick Süskind, dal libro Il profumo
Yesterday I decided to try not to read news, articles, numbers.
It is difficult because the situation evolves rapidly and differently depending on the city, region, country in which you are located. I also believe that a perverse mechanism has been triggered that leads to news bulimia, fueled by anxiety.
It is correct to know what happens outside your house, but there is also the risk of entering a perverse vortex, between fake and conspiracy, which could be harmful.
We need to take breaks and be silent.
The situation we are experiencing in these days following the stringent restrictions to limit the spread of the coronavirus, leads us to reflect on the words that are used on various newspaper headlines, which are not already known.
Rare Diseases, Zero Discrimnation and Hearing. Three International Days we celebrate.
Posted in Technology & Research
These three important celebrations are one after the other and in a way or another they relate to us and what we do.
Here is the calendar of events, international days that interest us and that we want to celebrate in a different way during the year.
Our journey through history starts ideologically from Florence and practically from Bagno a Ripoli in an itinerary that alternates cypresses and farmhouses, vineyards and olive groves, tabernacles, majestic Medici villas and beautiful cave churches. We will then reach the Vallombrosa Abbey, founded in 1036, in a biogenetic state forest-nature reserve, where we will find the tallest tree in Italy, a Douglas fir of 62.45 meters. And the landscape will change again in the Casentino Valley: Montemignaio and Castel Leone, the Hermitage of Quorle where we will meet Wolfgang Fasser (physiotherapist and music therapist, blind due to a genetic disease, collaborator of the Romanian fraternity, custodian of welcome and silence). Final stage in Poppi, a medieval village that with its famous castle seals a great ending for this unforgettable journey.