Today I’ll be sharing my thoughts as a disabled person, experienced in social isolation long before this current pandemic.
I’m vulnerable.
Initially I wasn’t classified as “very increased risk” shielding-category-vulnerable. Then I received a letter in late May -dated April- advising me to shield. I’m still confused by this as my condition is supposed to put me in the middle (“increased risk”) category. People like me weren’t supposed to receive letters, and my mother was unable to take time off from her part time work (outside of the home) as it would’ve been unpaid. (Only those in the higher category were supported with fully-paid wages for anyone in their household). Another letter I opened in late June (with the more appropriate date of June 22nd) confirmed I’d been identified as someone at very increased risk and updating me on new shielding guidelines. Which is more than a little late for someone who’s mum continued to work one day a week in a supermarket throughout the “peak” time. I can’t help but wonder who else had this confusion, especially anyone with family members in key roles, working more hours out of the house and at risk than my mum has been.
So, why am I “uncomfortable” with things being relaxed?
Panic stations, I can deal with. Isolation, I can manage. Threats to health, missing friends, arguing with authorities; these factors set the scene for most of my childhood. If anything, recent months have made my usual lifestyle feel more… “Normal”, in among everyone else spending so much time at home. But what about when friends start asking if I can join them again? What about when my music group meets up, when the Zoom calls stop but my vulnerable status remains? The decisions will pile up. Go out? Social distance? Mask? There will be government advice but, judging by past actions, they don’t air on the side of caution and often change their minds. When you’re more at risk, decisions made by others aren’t so easily transferable. I can’t let my guard down and go with the possibly-socially-distanced crowd. Whatever stage non-disabled, low risk people are at, I’m likely to be a few rolls of my wheels behind. Or a lot of steps, if I’m still at home where I don’t use my wheelchair!
I have no idea when I’ll feel safe to pursue things like singing again. It’s hard enough for non-vulnerable performers right now.
I’m aware this post is all about me. It’s because that’s what I know. There are plenty with more worries than I’m listing here. I have my parents to care for me, I trust them to take the kind of care I would at any time when they leave our home for work or supplies. I don’t have the same fear of those with limited care options, or without a safe place to live.
This Guardian article is pretty old now, posted in late March. But it talks about those fears over accessing care. (I must warn you I did find parts of it upsetting).
Kate Stanforth is a model, dancer and disability blogger who is shielding as a member of the very increased risk group (though I’m not sure if she is still on that list as the criteria were changed). She’s shared her feelings about this situation more than once on Instagram, including with in this post written by her friend (who has a private account):
And more recently with this post of her own:
Bringing back memories…
I’m also concerned for memories this situation will be triggering for people who’ve experienced social isolation on their own before. The phrasing of “social isolation on their own,” feels wrong but I mean it in that, at the moment, this is wide-spread isolation in a way that feels far less… Isolating. I mean that it’s harder when it’s you, on your own, dropping out of a world that seems to be continuing without you in it. The first time I left our garden (after a month of lockdown) I looked across the fields and cried. Not for right now, but for the memories of all the other times I’ve forgotten how big the sky is, or how tree branches seem to move in relation to one another as you pass beneath them. Three (3) dimensional things that I would only see in photographs for weeks or months at a time when I was younger.
Pippa Stacey (a chronically ill writer and blogger) created this post about the non-disabled lockdown experience not being comparable to chronic conditions:
I’m scared other people will try to empathise and misjudge it.
I was writing songs about missing seeing my friends blink, forgetting the true proportions of their features, and just… Being alone, a long time ago. I’m scared people will think they “get it” now. Use this experience to increase your empathy, sure. But not by assuming you know it all. It’s hard to imagine me saying this to anybody’s face as I know they would be well meaning but… Use this experience to get uncomfortable, use it to educate yourself on the experiences of others and admit that you haven’t experienced it all, none of us know it all. And nobody expects you to. I find it uncomfortable to admit I have a lot to learn, but I know that I do. I want people to listen to each other, to allow space for people who’ve previously been pushed aside to speak. Listen, don’t talk over us while joyously declaring how much you “get it now”.
Will I be left behind again?
Combining the memories of the past with a fear that people won’t understand gives me an idea of what the next few months will feel like. I don’t know how I’m going to react to feeling others shift back to “normal” while spending most days in the house remains my normal, even beyond the days of virus related dangers. The first day I heard children returning to a school nearby brought this thought to mind because it hurt. Because it reminded me of everything I’ve missed and am set to continue missing long after this year is over.
I won’t be the same as I was before.
Partly because I’m 19, and in the process of growing up. I had to change. Before all this came about I was at a point where my life didn’t make sense any more. Things would’ve shifted a lot for me over the last few months, with or without a global pandemic. Before this, I hugged less than I used to. I’d identified it as an anxiety response, left over from the time when I had months between visits from friends. I didn’t need to hold onto everyone, to every moment, any more. Talk on the news about the mental health effects of adjusting after lockdown make me realise I’ve been through that already. Back when I first joined my music group after years of solitude.
What if it hurts like it did when I first started socialising again? What if my existing cognitive symptoms are worsened by groups of people and overwhelm I’ve got used to not dealing with recently? Then again, what if it’s okay? After a while. Maybe I’ll be more me than ever, after this time deciding things purely for myself. I don’t know.
So yeah, I’m scared. But so are most of the people I know and love, I’m not really alone in this.
Please wear masks, protect the people around you. Make this world as safe as possible.
Viewing the vulnerable as humans worth protecting shoudn’t feel radical. It is not an overreaction. Wearing a mask is not an overreaction.
Yes, we need to be wary of patterns that increase and maintain social anxiety but also… Covid-19. Anxiety is starting to look pretty rational in particular circumstances. What else can I say? For the foreseeable future, I’m keeping all non-household hugs 100% virtual. No matter what restrictions are eased.
Disability blogger Chloe Tear wrote a similar post to this. If I’d seen hers before finishing this draft I probably would’ve chosen to share it instead of writing my own! She covers many of the same points I did but also offers a different perspective as somebody who is partially sighted: Click here to view her post (As A Disabled Person, I’m Not Ready for Lockdown to End)
I’ll be here next week with a more light-hearted post. So do check back for that. In the meantime, I’ve added this site to Bloglovin’ and you can follow it by clicking here.
Until then,
-Sakara.
P.S. It was sweet to spot those who are not required to social distance enjoying each other’s company! [Photo above (top right of the small gallery) One pigeon grooming another while sitting in a tree]