The World They Live

Not everyone sees the world in the same way. This project aims to make people understand there are many different ways to feel the world, starting for the ways we, with our senses, see, smell, hear and savor everything that happens around.

The world they live intends to democratize what, over the years, has remained hidden. A work in progress carried out with long interviews and a lot of reflection to give visibility to the intangible

Agustí, almost seventy years old, was diagnosed with Usher syndrome at fifty-three. This hereditary and genetic disease that causes hearing and vision loss through «retinitis pigmentosa» which causes visual field loss. Although there are eighty possible origins and many more unknown, Usher syndrome is one of the main causes of deafblindness.

Seven months after her birth, Andrea suffered from meningitis which, as a consequence, left her with hearing loss. Since then, without headphones, he can’t hear the bass. Thanks to them, «his life goes from being in black and white to color» and due to his efforts, in most cases or when situations are more complex, he communicates through lip reading.

Aida lost her hearing at the complex age of eighteen, after being diagnosed with neurofibromatosis type II, a rare and genetic disease that generates tumors around the nerves in her body.

She had severe damage around the auditory nerves, so there was no other option but to remove both. Her alternative is reduced to an implant connected directly to the brain stem, but the artificiality of the sounds generates rejection. That is why Aida walks without hearing or feeling beyond what her auditory memory reminds her of, for example, the voices of her relatives, the sea, songs from her adolescence, etc.

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