Smart devices across Arnhem Land are beginning to transform the lives of Indigenous Australians living with Machado Joseph Disease (MJD), a cruel, hereditary disease with no known cure.
People with MJD progressively lose mobility and speech as their muscles ‘shut down’. The social impact can hit hard: disconnection and isolation often leads to depression.
While MJD is found all over the world, its prevalence among Indigenous Australians in the Northern Territory is 100 times higher than the international average.
Gayangwa Lalara knows first-hand the devastating impact of this disease and has seen how the symptoms are presenting earlier and earlier with every generation. Gayangwa is a Warnindilyakwa woman of Groote Eylandt, a remote island in the Gulf of Carpentaria in the NT. At 70 years of age, MJD has been a part of her life for as long as she can remember. Gayangwa’s father developed the disease when he was an older man. All six of her brothers and sisters were affected by their 40s. She has been a carer for two of her sisters’ children for more than 18 years. Now the third generation of Gayangwa’s family is sick with MJD: her 20-year-old niece has been using a wheelchair for the past six years.
Thankfully, Gayangwa – as the Vice-Chairperson of the MJD Foundation – can also tell a remarkable story about the potential of technology to transform her community.
The MJD Foundation assists its clients to use mobile technology and apps to improve communication and awareness, to enhance social and emotional wellbeing, to deliver health services, to support education and to provide employment opportunities.
We dubbed them ‘the hardest working mobile tablets in Australia’, these devices do everything from delivering speech therapy online to capturing personal stories before the ability to speak or move is lost.
Powered by the Telstra Foundation, this innovative program is expanding to other communities impacted by MJD. Through digital connections we want to increase independence, self esteem, resilience and social inclusion of people impacted by MJD, in the Northern Territory and beyond.
Arnhem Land, Northern Territory
Increases independence, self esteem, resilience and social inclusion of people impacted by MJD