‘My Pandemic’ with Katie and Scott
‘My Pandemic’ is a Barnwood Trust podcast series that explores the experiences of disabled people and people with mental health challenges during this time of social distancing and lockdowns. We talk about the challenges and the things that can bring strength during this time.
To begin this series, we spoke with Katie and Scott, and asked them about the challenges they had encountered since early 2020, when the pandemic began. Katie spoke of how lockdowns took away her sense of freedom and control over her own life, which heightened her anxiety and meant that she felt less confident about leaving the house in her chair and being near people who may not respect social distancing.
“Not having the confidence to drive in my chair outside and the thought of if people are going to respect when I ask them to move away causes me a lot of anxiety. So, I'm not able to go even to the shop without somebody with me, which takes away that little bit of mental freedom I used to give myself.“
Scott described himself as a very resilient person, but the pandemic presented so many challenges all at once, that even he found it difficult to cope. One of his biggest challenges was related to his career in theatre and the arts, and the uncertainty of whether the industry would survive.
Guilt was something that both Katie and Scott felt, but for different reasons. Katie felt guilty for being in the position of having their own home, a job, and a good team around them, when so many other disabled people do not.
Scott felt guilt around how he was forced to manage his team of carers, having to sometimes alter their care schedule due to changing Government advice, leaving carers out of pocket or inconvenienced.
“For me there is a lot of guilt; who do I protect when I've got such a large team? Because I'm seen as a sort of manager of the team... So, when I have to make tough decisions, I'm like, this isn't just a care team, this is a family to me. It’s constant juggling and I’ve never had to juggle that much.“
Despite the social distancing and lack of freedom, Katie found comfort in the sense of camaraderie across the country in the early months of lockdown, and Scott likened it to the feeling of coming together during World War II.
Having their family and one another helped to keep them both strong, as well as caring for their cat (Monty) and dog (Mush), and whilst technology isn’t something Katie feels confident using, staying connected regularly with her family through video calls has brought them even closer together.
Finding positives in the challenges, Katie ends by reflecting on how discussing mental health has become more normalised, and that she has found even more appreciation for what she has.
“I have had a “Oh my goodness, I am so grateful to have what we've got” moment and I really appreciate where we've been. And even the fact that I can be open about my mental health. Yes, it's still there, the anxiety still happens, but I can be open about it, and I know now much clearer about how to deal with it, because I can be open and honest about it.“
You can listen to the full podcast with Katie and Scott here.