Lived experience stories

Joe Monteleone is a deafblind artist living in Victoria, Australia, with Usher syndrome type 1. He is passionate about sculpture and printmaking and advocates for greater understanding of deafblind experiences. Joe hopes people recognise that deafblind people are diverse, with different vision levels and communication methods, yet many still face

Profoundly deaf and fitted with a harness containing two large microphones the size of small, thick coasters, the harness went over my head with the speakers on my chest and strapped at the back, with two speaker wires trailing up to my ears where they were attached to small earpieces that sat in my ears.

My name is Enya Savory, I am a 24 year old Deafblind woman living in the Hunter region of NSW. My Deafblindness doesn’t have a specific name but it is a result of having both atypical Albinism and a connective tissue disorder.I want more people to know that Deafblindness affects

Jennifer Weir is a former Critical Care nurse and After-Hours Nurse Manager who lives with Usher Syndrome, a progressive condition causing combined hearing and vision loss. Diagnosed with Retinitis Pigmentosa at 20 and later with Usher Syndrome, Jennifer worked in the health industry for over 40 years while adapting to

Profoundly deaf and fitted with a harness containing two large microphones the size of small, thick coasters, the harness went over my head with the speakers on my chest and strapped at the back, with two speaker wires trailing up to my ears where they were attached to small earpieces that sat in my ears.

Alex’s Deafblind Camp Stories. In the afternoon, we all travelled to Hillarys and met our Volunteers and had wonderful Dinner.
That night, we had an opportunity to play the African Drum (I personally never played a Drum before) and it was one of the best Music sessions ever!