As Deafblind Awareness Week comes to an end, we reached out to Jo Milne, the founder of Cure Usher and winner of a Lifetime Achievement Award. Last week, Jo embarked on her biggest challenge yet, climbing England’s highest peak, with only 5% of her vision remaining. Jo’s challenge highlights the importance of our sight and how the world takes sound for granted on a daily basis. Our society dismisses the beauty of nature because we interact with it on a subconscious level, often walking past a beautiful flower or momentarily viewing a sunset. Jo’s challenge illuminates this, it symbolises the power of our senses and the world it lets us embrace and experience.
Jo set up Cure Usher having regularly experienced frustration and loneliness, with many individuals lacking knowledge of what Usher syndrome is. Through setting up Cure Usher, Jo can not only educate the public but also directly fund research which gives others living with the syndrome more confidence knowing that science and awareness is being pushed.
For Jo, it is important that we share these stories, to raise awareness of this condition and to enable doors to be opened. For Jo, campaigning is her life, and she works constantly to push for more awareness particularly around healthcare and education. Only recently, Jo’s mum experienced a lack of awareness of Usher syndrome at a routine eye check at a leading opticians. Not only was this worrying in an environment where employers specialise in the area, but also underlined the fact that nothing had changed since Jo was age 7 in the same setting. Ultimately, there is a gap in knowledge when it comes to Usher syndrome, and this is something Jo is campaigning to bridge.
Through her work, Jo continues being the woman she needed when she was a girl, when she was faced with specialists who were unaware of her condition. There is nearly half a million people in the UK who live with dual sensory loss, and still not many know what the red and white stripes on a cane represent.
Outside of volunteering for the charity, Jo is also a Patron for Deaf-initely Women, a charity which supports Deaf, Deafblind, and hard of hearing women with emotional strength to help them cope with handling both work and their family lives. The charity strives to support victims of domestic and sexual abuse by providing them with a safe space.
Overall, Jo’s story is a powerful reminder of the strength and advocacy needed to drive meaningful change in society. Her most recent expedition, climbing Scafell Pike symbolises the often-overlooked value of our senses and the need for greater understanding of conditions like Usher syndrome. Through Cure Usher and her work with Deaf-initely Women, Jo is bridging critical gaps in awareness and education. Her work not only empowers those living with dual-sensory loss but also inspires a more informed society.