Hi everyone, as we get close to the end of the project, I thought it would be a nice idea to involve an interview with a person with a physical disorder to get their perceptions on what it’s been like to be someone in their shoes during this very challenging time recently.
As such I decided to conduct an interview with my friend, Selena.
I have been friends with Selena for a few years now and would consider her a close pal of mine. And yet despite the longevity of our relationship, we have never had an open, proper discussion about her disability, which by the way is no means an invisible one. The first real talk about her muscular dystrophy came about during the start of the pandemic when she would confide in me the stresses of living with a disability during Covid-19 and how her life had changed as a result.
I know a lot of people try to avoid sensitive topics like disability because they’re afraid of perhaps overstepping the mark or saying something wrong, I think I’ve always been one of those people too. But if my discussion with Selena has taught me anything, it’s that sometimes the person in question honestly would just prefer to have this talk out in the open at the start of the relationship.
Of course, it’s important to note that everyone is different and there may be some people living with a physical disability who might just prefer you don’t pry at all. But there’s also people like my friend who would rather just initiate an open dialogue about it and I believe it’s important to respect things like this as they can at times make way for a more comfortable and healthy friendship.
Selena also thinks this, which is why she agreed to participate in this interview of what it has been like to live as someone like her recently. I want to thank her for making this possible and for being as open as she was about the real toll Covid-19.
So first of all, could you maybe just talk a little about your disability?
So I have a type of muscular dystrophy which is basically a genetic disease that essentially weakens your bones over time. This means I have trouble with things like my reflexes, walking and my CNS. For me personally, I was diagnosed quite early on in my childhood so it’s all I’ve ever known really.
What would you say has been the biggest impact of Covid-19 on your lifestyle?
Well, where do I even begin? Honestly I think it’s just been the social isolation. Like I think I’m just like most other normal bodied people in that sense, although probably more so because the risk is greater in my sense and so I’ve had to shield for what feels like forever.
How has shielding been?
Awful, if I’m being honest. I’m just glad I’ve had my family around to keep me company because of course they’ve also had to shield for my sake too. It’s also been quite exhausting for us, like all the safety precautions we’ve had to have been doing in terms of like sanitising packages and groceries and that kind of thing.
What have you been doing to keep yourself busy and in high spirits during lockdown?
If I’m being honest, I’ve been quite lazy- I couldn’t tell you how much hours I’ve spent on Netflix. Although to be fair, I have tried my hand at some new things like baking for example. Can’t say I’m very good at it but I’ll be sure to at least try it a few more times!
Do you think you’ve felt more loneliness during the pandemic as a person with a physical disability?
I would say so, yes. Because I know lots of people who have perhaps bended the rules a little at times to meet with friends they haven’t seen for ages. Whether you think this is wrong or right doesn’t take away from the fact that as a vulnerable person, this thought could never even cross my mind. Like for able-bodied people, they’ve been able to have found a small sense of normality in things like their weekly shopping trips or going out for a walk in a park. But for me personally, I feel like the risk to my already challenged health is too big for me to even consider doing those kinds of things.
What do you miss the most about normal life?
Probably, the sense of normality of just being a normal teenager and hanging out with friends and going to lectures and whatnot. Like of course as being someone who is and both looks different, I have felt different to the people around me my whole life. But then especially now, like getting a letter labelling you as a vulnerable individual who needs to shield ASAP, that kind of thing just cements the message home that you are different and that you do need to take these extra precautions you know.
Do you feel like you’ve been seen and heard by the government as a vulnerable individual?
Kind of. I mean I know like they have been trying to accommodate for my needs as a person with a physical illness, like for example they’ve been able to make sure I’ve still been able to attend my regular hospital check-ups and what not. But at the same time, I’d be lying if I said that I don’t feel the government has kind of brushed me and my needs aside at times and have almost made me feel invisible sometimes during the pandemic.
How do you feel now that the start to the end is hopefully approaching?
Excited, like really excited. I feel like I’ve almost lost the last year of my life so to know that hopefully soon coronavirus won’t rule our lives anymore is such a refreshing thought. Although of course, I do have some worries about going back to normal life, I have to admit.
What is your biggest worry about returning back to normal, everyday life?
I think I just feel anxious. Like I’m scared that every time I go out, I’m going to be constantly having all these bad like ‘what if’ thoughts in the back of my mind. And that sounds really tiring. And not even like just the mental wellbeing worries too, but also the more practical ones. Like as a mobility scooter user. I’m a bit anxious that it will be really hard to maintain the 2 metre distancing rules in public.
How do you think the government can support people like you in these worries and getting back out there?
Just by enforcing more rules to be honest. Like I would feel much more reassured if there were more guidelines out there you know, like for example just making sure people actually wear their masks in spaces where they strictly should be like enclosed public spaces is a start. For physically disabled people in particular, I think it would be a good idea to maybe have a hour reserved for us to shop in supermarkets just like how there were for key workers. I think that’d really help in making people feel safe and secure as they start to go back to normal life.
And finally, is there anything you would say to people who are friends or family of disabled people during this time?
Simply talk to them. Like check up on them and their wellbeing just like you hopefully would do to any of your other friends. Especially now as we hopefully leave this pandemic, it will probably lead to people like me feeling even more isolated due to anxieties about going out as others more quickly reunite with friends and return to normal life. I would say just give them a text you know, let them know you’re thinking of them and missing them- maybe even offer a socially distanced catch up outside somewhere.