We rely on the participation of five members of the deafblind community in the UK to help us understand the challenges in their everyday life that were brought on by the pandemic.
Below, you will find brief portraits of our participants.
Roger
‘There’s a magic to touch…’
Roger is 81, retired, and lives with his vision-impaired wife in a small village in the English Midlands. While Roger can make out sharp sounds like birdsong, spoken word sounds ‘mushy’ without his hearing aids. Corneal scars and glaucoma suffered during childhood limits what he can perceive quite a bit – although he is able to see colour, but with little definition. Trees – one of his favourite things – appear as a golden or green mass.
Roger describes himself as ‘touch hungry’- it is a major conduit of communicating with people and understanding his environment. Having to wear gloves, limit touch and the general shift towards touchscreens and contactless payment in everyday transactions frustrates on a number of levels. But Roger is always careful to point out that touch is more than just a compensation. There is a joy or magic to touching the world, a ‘feel’ to the seasons and even a world view that comes from being tactile.
He knows his home village very well and navigates its streets and parks through a detailed mental map. This knowledge comes through what he can remember, but also through the soles of his feet, changes in atmospheric conditions or particular colours.
Social networks and interpersonal relationships are also crucial to Roger’s sense of independence and well-being. Before the lockdown their home was host to a range of frequent visitors who could help with simple things and act as ‘that third, extra eye’.
Brian
A keen paraclimber, Brian is the first blind person to summit the Eiger mountain. Originally from Birmingham but living in East Anglia, Brian is a trustee of Deafblind UK and works in Outdoor Education. Due to Usher’s Syndrome and retinis pigmentosa, he has no peripheral vision, while his central vision is also impaired. From dusk onwards, he has no vision at all. Brian wears two hearing aids to aid his 50% hearing.
Brian goes out and about with his guide dog. Often, he is also accompanied by a close friend who is able to provide the additional support the post-COVID world now requires. His friend helps him in situations when he would have used his sense of touch before, such as confirming an object or situation.
Activities that involve ‘touch and feel’ generally prove more satisfying for Brian. When setting up a campsite for example, he can feel his way through the task of digging and levelling in quite a satisfying way. And yet going to the shops without appropriate assistance can prove much more difficult, especially in the era of social distancing.
Knowing how to judge the flow of people down a shopping aisle or around entrances/exits can prove a real challenge. While his cane and guide dog make him very visible, this has not protected him from having his space invaded or even being shoulder barged. These difficulties aside, Brian remains one of our most active participants; in his diaries, rarely a day goes by when he and his dog are not outside or involved in physical activity, whether it is walking in the park or running on his treadmill at home.
Mairi
‘it can be hard for me to kind of see the things I need at the moment because I don’t want to touch too many things just due to the virus.’
Originally from Aberdeenshire, Mairi has recently moved to Larbert with her partner, so he can be closer to his job in Glasgow. This means that she will be learning a whole new environment over the course of late 2021, a process she has agreed to document for this project. This gives us an opportunity to understand how a deafblind person maps their locality.
Fluent in British Sign Language (BSL) Mairi has limited (tunnel) vision in both eyes but can barely see at night. Her cochlear implant aids her hearing to some extent, but she also finds it difficult to tell which direction a sound is coming from. Her Deafblindness is a result of Usher’s Syndrome, and touch is an important sense for her – whether it’s fixing the fence in her garden, or checking, with palm and fingers, how much the carpet needs hoovering.
Mairi has done everything she can to counteract the feeling of being ‘shut in’ – she’s been counting her steps and making frequent use of the parks in her town with her partner and her guide dog. Social distancing has proved difficult. As she points out, dogs are not able to observe these rules – but also, the visibility of being blind means that people will move to assist her without being asked despite social distancing being in place.
Like Richard, Mairi feels very aware of atmosphere and environment and touches it with more than just her hands. Sun, mist or fog creates a very different perception of the world around her. As she explains, touching is also ‘seeing’, and the new world of pandemic restrictions significantly curtails her ‘vision’.
Issy
‘I really, really miss that extra level of information that you get from just touching. Sometimes I feel like I lost a third sense.’
Issy lives in Glasgow with her husband, and her retired guide dog Ice. She has Usher’s Syndrome type II. She is blind and severely deaf but has a passion for music. She enjoys playing the flute, often practicing for hours at a time. Issy used to work as a teacher of the deaf and is now retired.
Imagination plays a key role for Issy’s experience of her environment. With her ‘inner eye’ she will frequently catch things beyond the grasp of sight, like the almost solid nature of the winter air in the morning or the enchanting atmosphere of a frozen landscape.
Being without a working guide dog during the first half of pandemic has meant that Issy felt severely restricted in her movements. Navigating her busy neighbourhood with her cane alone was impossible without using her sense of touch to confirm where she is and where she is going. Naturally, the prospect of having to touch walls, fences and lampposts in the middle of a pandemic made Issy weary to go out on her own. She found that she relied much more on her husband for support and often felt restricted in her ability to socialise.
David
‘I’m safe being bored.’
David is in his 60s and profoundly deafblind. He can only communicate through a Guide Communicator. He lives in a small town in Central Scotland and is very reliant on his support worker Debbie who helps around the house, assists him to be mobile and acts as a translator. Touch is an important means for him to engage with the world around him and with COVID restrictions, that world has severely contracted. He is unable to go shopping or for his usual walks, and games such as dominoes or his model making are some of the few ways he has of relieving the boredom.
David enjoys working with his hands, especially through modelling. He is a major Meccano enthusiast and has even used his hobby to explore his feelings on the pandemic and lockdown restrictions. But there is no question that David is desperate to get back out into the world.