The limitations and frustrations of those with sight and hearing problems can now be better understood thanks to a virtual reality headset, says Margaret Jennings
WITH a large dark shadowy patch moving in the middle of the screen and all sounds muffled, it’s irritating to try and figure out what the video is about. We cannot see properly or hear clearly. But Alfred: The Story, a series of scenes featuring the life of a 74-year-old man suffering from age-related macular degeneration (AMD) isn’t badly produced — it’s relating his experience exactly as it is.
Welcome to the world of Embodied Labs, a US company that is using a Virtual Reality headset, headphones, and a hand-tracking device to allow the medical world and caregivers an opportunity to experience first- hand the frustrations and limitations of patients with illness or disability.
Research by the Macular Pigment Research Group in Waterford Institute of Technology estimates that 7% of Irish people aged 50 years or older are living with AMD, a disease that causes the gradual loss of sight due to blurring or loss of central vision. But although the medical world and caregivers know what the textbook effects of the disease are, and how loved ones verbally try to explain what they are experiencing, they can only truly empathise by getting into the patient’s shoes, so to speak.
It’s a revolutionary idea, developed by the founder of Embodied Labs, Carrie Shaw, after her mother developed early onset Alzheimer’s.
“My mum had vision impairments in her left field of view and I found myself struggling to explain to her caregivers that it wasn’t that she couldn’t see out of her left eye, but that she couldn’t see out of her left visual fields, in both eyes,” she says.
Shaw created makeshift goggles that blacked out where her mother’s vision was blocked, so the caregivers could understand her perspective better.
“That half-eaten plate of food sitting on the table in front of her now made sense to them. So they rotated her plate of food until all her food was eaten and my mum was happier and healthier because of it.”
Fast-forward to 2012 and the concept behind the goggles was elevated with the launch of Ocolis Rift, a virtual reality headset, developed and manufactured by a division of Facebook Inc, that allows a sense of complete immersion in a three-dimensional world.
Shaw is now working with a team of medical illustrators, human-computer interaction and filmmakers, and with her sister Erin Washington — also a caregiver for her mother — who is a curriculum designer for Embodied Labs.
“Students, doctors, and caregivers have never been able to step into their patients’ worlds before, until now,” says Shaw. “They go from being a sympathetic provider to now having a shared experience with their patient, so can empathise with the patient and become more effective and efficient because of that.”
It may not be too long before family members can don a headset to understand more fully what an older parent, for instance, is experiencing. But cost is a restriction at the moment, Erin Washington tells Feelgood.
“As content developers, to a large extent we are at the mercy of the companies that produce the hardware. We would love for our Human Experience Library to be widely available so that family caregivers could easily embody a person with the diseases or impairments that their loved ones experience,” she says.
“However, at the present time, we are committed to developing experiences for ‘high-fidelity VR’, like the Oculus Rift. We hope that these headsets, and headsets like it, will continue to come down in cost and be more widely accessible.”
For several who have tried the technology so far, it has been a moving experience.
“We have had many lay people try our VR experiences, and it has been very powerful for them. It is not unusual for people to come out of the headset very emotionally affected — even with tears in their eyes,” explains Washington.
“These are all people who have heard from their loved one with macular degeneration and/or high-frequency hearing loss about their experience, but it is another thing entirely to really experience it.
“That is not to say that someone can truly understand everything about the disease through one of our experiences. For that reason, we have migrated away from saying our experiences give people the ability to be empathetic — rather, it’s that our experiences allow for a care partner to put on a headset and for a few minutes, embody one perspective of what it is like to have a disease or impairment. Those few minutes then allow the person to provide better care for that person.”
With VR here to stay and eventually, like all technology, dropping in price, we may all be donning these headsets in future.
See: http://bit.ly/29jAnD8 and www.embodiedlabs.com