Living with Usher Syndrome… Daryl’s story
Posted on September 16, 2013
4 min read
Meet Daryl Harrison. He was born deaf and now in his late forties, he is learning to live with “Ushers”.
Usher Syndrome is a major cause of deafblindness and is a combination of deafness from birth and late onset retina pigmentosa, a deteriorating eye condition, more generally known as tunnel vision. Usher syndrome is categorised into three broad groups according to the type and severity of symptoms. There is no cure. Services aim to help the person prepare for and cope with the dual loss of sight and hearing1.
Research into the genetics of Usher carried out in the UK have suggest the number is 15 per 100,000 live births and in Australia there could be as many as 3,500 people currently living with the condition. However, many are “hidden” in either the deaf or the blind communities or are with their families or in aged care2.
Isolation manifests in a variety of ways for people living with Usher Syndrome. Many are cut off from the community around them due to communication barriers posed by dual vision and hearing loss. For Daryl, this isolation is compounded by the fact that he lives in rural Victoria and with the tyranny of distance, he is cut off from many people around him, but also from the rest of the deafblind community. However, Daryl is breaking down these barriers everyday with the use of technology and sharing his passion and knowledge with others in the community.
Daryl visits Melbourne regularly to receive digital literacy and technology training as part of Telstra and Able Australia’s partnership, and to teach other members of the deafblind community (pictured). He travels independently, via public transport, using a variety of technologies to navigate his way. He coordinates his visits with support staff via email and SMS. Daryl books train tickets, reads timetables and communicates with people along the way. He is also wrapped with his latest gadget, an ‘I-love-view’ CCTV (Closed Circuit TV) reader that helps him to read the monitors at train stations, menus in cafes and information when shopping. The CCTV allows him to quickly change size, colours, brightness and magnification to make things easier to read. Daryl shows off his new toy in the following video:
The ability to alter size and colour of text is crucial for many people with Usher Syndrome. This condition is very susceptible to glare and makes it impossible for him to read the traditional ‘black text, white background’ used on computers and other devices. While many tablet and smart phones enable the inverting of colours (white on black for example), this functionality is not consistent across all programs and applications and makes access for users with low vision frustratingly inconsistent.
Never one to be discouraged, Daryl is constantly discovering new approaches, apps and devices that assist deafblind people in accessing the latest technology. He routinely conducts one-on-one training sessions with other clients as part of Ablelink’s ‘iLearnshare’ peer training program and is passionate about sharing his love for technology and his stories of how he has overcome many obstacles through its use.
“Ablelink tutorials are really excellent and helpful for deafblind people to learn computers, mobile phones and braille too. Who knows what the future will hold!?” said Daryl.
For Daryl and many deafblind people, technology is helping them dismantle the barriers that separate them from each other and the community around them one ‘click’ at a time.
More from Claire Tellefson:
 Information from UK Sense, a charity supporting Deafblind people.