A West Lothian man has spoken of the difficulties facing the dual sensory loss community during the pandemic as part of a research campaign, the ‘Touch Post-COVID-19’, conducted by Glasgow University researchers.
Desmond Smith, from Broxburn, says that he had to withdraw from most social activity and contact and was forced to become even more dependent on his care worker Jacqui Knowles during the pandemic. He relied heavily on the sense of touch due to living with dual sensory loss - something that was hampered during Covid-19.
Due to feeling anxious about touching surfaces during a pandemic, it left him feeling less confident and unable to get around. This meant he was essentially restricted to his own home and forced to stay indoors.
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He admits that he was less impacted by the Covid pandemic than other members of the dual sensory loss community. He says that those relying on lip reading were unable to do so due to the requirement for masks.
Desmond, who is a talented Meccano model maker, says that he also feels as though there was little thought given to those with disabilities by those in power. He argues that more should be done to support those with sensory impairments during a future public health crisis.
On his experience, he said: “I had to withdraw from most social activity and contact, and became even more dependent on my careworker and guide communicator Jacqui Knowles. As my dual sensory loss is profound, I was very dependent on touch and being able to communicate this way, so my engagement with the wider world became narrower and restricted to my ‘bubble’.
“I became increasingly anxious about social contact and largely stayed indoors. Another, non-Covid related factor was that I also fell seriously ill with another condition, which restricted my movements and activities even further.
“In terms of other aspects, I was less affected than some other dual sensory loss people- for example, those who need to lip read, who cannot do so due to masks. My visor allowed me to still use my sense of smell and it had little to no effect on guide communication.”
Desmond felt that there was not a lot of consideration given towards people living in his circumstances and says that things could have been worse if his careworker had become ill. He said: “I was very dependent on my guide communicator and had recourse to very little other support beyond her, had Jacqui fallen ill or been unable to help, it could have been problematic.
“It is hard to replicate a working relationship as long and as ‘in synch’ as the one I enjoy with Jacqui. In general, I felt effectively trapped in my home, as even sticking to the outdoors would present many difficulties in engaging with my environment.
“I observed that the general tone and attitude to people with disabilities was very poor, and that there was very little thought put into how this would affect those in my position. Touch is a major aspect of how I can engage with the outside world, and this was severely curtailed due to the restrictions.”
Before the pandemic, Desmond was otherwise quite confident in going out and about and was a keen, active member of Meccano events. He is understood to have an excellent memory for place and geography and was at ease navigating even large cities such as Edinburgh.
Since the pandemic restrictions have eased, he has found his memory remains as good, although there have been some changes to the landscape/environment he has had to re-learn.
The ‘Touch Post-COVID-19’ project, aimed to develop strategies and policies for people who rely on their sense of touch to discover the world around them. The study collected audio-visual data such as interviews and audio diaries from participants to understand their experiences of space, memory, and social interactions.
This understanding helped create a tool for audio and visually impaired people to better navigate their surroundings in the post-pandemic world. The results will be used by researchers to develop new technologies to help facilitate safe and reliable communication and interaction with surroundings.
Dr Azadeh Emadi, lecturer in Film and Television at The University of Glasgow, who was part of the project comments: “The project aims to understand and reveal the relevance of deafblind experiences of touch and touch deprivation during COVID-19 to a larger general population.
“In collaboration with deafblind community, we gathered audio-visual data, in the form of audio diaries and interviews, about their experiences. From gathered data, we have been developing creative works, a policy brief, and a prototype device that enhances situational awareness through haptics technology informed by radar sensors.
“Our research data shows that COVID-19 has increased the intimacy and reliance on the relationship with close partners and guid communicators, but endangered broader access to social and cultural life. To rethink touch and address the increasing isolation of deafblind individuals require a new interdisciplinary framework, one that is based on mutual communication and inclusion of the community.”
The work by the team at the University of Glasgow forms part of a £550 million COVID-19 rapid investment programme by UK Research and Innovation (UKRI) - the largest public funder of research and development in the UK.
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