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I will always be me
Humans are a social species; the very foundation of the way we live is based on human interactions.
Speaking is fundamental to the way we share ideas and express our feelings.
But imagine if this were to stop and you could no longer speak to people, let alone tell the people you care about that you love them. For people living with motor neurone disease (MND) this is their reality. One of the major symptoms of the disease is that it eventually stops you from speaking in a matter of a few months.
I lost my Dad to MND on Christmas Day 2014. I watched as he gradually lost his ability to move, speak, eat and then breathe over the course of the previous year and I wondered whether technology could help.
Three years ago, GorWay partnered with the UK’s MND Association as founders of the NextGen Think Tank to explore whether technology could make MND a disease you could live with, rather than die from. Many well-known tech companies joined the group and the NextGen Think Tank has so far been instrumental in developing new speech technologies. One of these was the artificial intelligence-powered Quips augmented speech software. It then moved on to voice banking, the process of creating a digital version of your voice for use with assistive speech devices, ultimately making these devices sound like you.
Before the NextGen Think Tank it would require someone living with MND to spend at least a month in a professional recording studio and would cost over £5,000 to bank their voice. As a result very few people were able to use this technology.
Last year several members of the think tank worked with the MND Association and GorWay to develop a better way of voice banking. Dell, Intel, Computacenter and Jabra helped reimagine an at-home service called Voice Banking in a Box, where, on request, a preconfigured kit could be delivered to someone living with MND so they could capture their voice before it deteriorated. The kits allowed people to bank their own voice at home in about an hour. Most importantly this new service was completely free to the user.
This year, Dell and Intel have gone even further by focusing on the experience of the voice banking process rather than just the technology. Having listened to user feedback it was clear that there were still improvements that could be made.
Dell proposed the creation of a book that helped the reader to share their feelings with someone they love, whilst banking their voice. The ambition is for the book to create an intimate and memorable event. This is in stark contrast to the solitary process that is currently used. MND is relatively rare, but as it takes hold, people living with the disease gradually become increasingly trapped inside their own body. A sentiment of people living with MND was that in social situations others can feel awkward around them, focusing more on the disease than the person in front of them. The book was specifically written to provide words to express those feelings.
The book I Will Always Be Me has been written by bestselling American author Jill Twiss, illustrated by award-winning artist Nicholas Stevenson, and was kindly dedicated to the memory of my Dad.
In a world first for voice banking technology, the book has also been replicated as a website that is compatible with phones, tablets and PCs. This means voice banking is now available instantly after diagnosis and can take less than 20 minutes to complete. The experience of voice banking has been transformed into a special moment that can be shared with someone close to them. With the users’ permission they are recorded while reading the book and the recording of their voice is automatically banked for use later. Users can opt to share their recordings with others as an animated audiobook or retain it as part of their legacy.
Motor Neurone Disease effects around 5,000 people in the UK. It is a terminal degenerative neurological condition with no known cure. The NextGen Think Tank’s work as a collaborative social innovation forum continues, and I hope we will see more of these significant improvements for the care of people living with motor neurone disease.
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