Ciara O’Connor
A wheelchair user on the lockdown life
Over the last 10 years, illness has conspired to keep our columnist Ciara O’Connor at home most of the time. She knows what it’s like for life to change beyond recognition and for there to be nothing you can do about it. This is her take on life in lockdown
FOR the first time since I became disabled, I don’t feel like an alien: I’m socialising in the same way as my friends, with the same points of reference. I’m not missing out.
A global pandemic has made my at-home life seem suddenly worth enriching with music, art, livestreams, theatre, panels, classes. There’s all the content I’ve ever wanted or needed: I’m spoiled with articles about self-care and mental health in isolation, lists of hacks and tips and encouragement. Daily, I’m advertised ever softer and lovelier clothes made for the home-life.
It’s easy to mistake this feeling in the euphoria of opportunity as an accessibility boom. But that’s a child believing that the sun came out especially for her birthday — I’m still a bystander and the world is still being made for the abled. I have to prepare myself for it to disappear as suddenly as it arrived.
Over the past 10 years, a smorgasbord of chronic illnesses has progressively conspired to keep me at home most of the time. I have mostly lived between my bed and my baby-mattressed spot on the couch for a while now. I’m not completely housebound; I use a wheelchair. The 2km around my home is my kingdom.
I didn’t realise how strange this life was until March, when it began to be reflected back to me in media, culture, politics — by everyone I know and everywhere I look. Instead of nightclubs and brunches, Instagram stories are now from my world: slices of toast and views from the window, a nice bit of evening light on the dining table and the dizzy joy of a seedling.
I’ve done it all, long before this. I’ve had ‘good’ tracksuits and ‘casual’ tracksuits, day pyjamas and night pyjamas, I’ve dyed my hair pink, and several other colours, too. It’s grown out now. I’ve become completely fixated on using the brown bananas, and other tiny domestic quests. I’ve felt like I’m going mad. I’ve gotten into jigsaws, gnocchi, picking fights; I’ve watched and become invested in huge quantities of obscure reality TV.
I know what it’s like for life to change beyond recognition and for there to be nothing you can do about it. I know what it’s like to not be able to leave the house, for your days and weeks to be formless, and the future uncertain and frightening. I know what it is to be forced into vulnerability and reliance, and to have to be grateful for it. I know what it’s like to be told, ‘I don’t know’ by the experts. I know the surreal feeling of not being able to get into a shop — not because of a global pandemic lockdown, but because there’s a step in.
I’ve found myself strangely defensive of this unwanted lifestyle. I feel like a de-facto hostess for the being-at-home experience, “Come in, come in, we have elasticated waistbands and afternoon cheese! Make yourselves comfortable. No, more comfortable than that — you’re going to be here a looong time.”
I am the locals of a seaside town, when the summer people come in June. It’s nice to have new faces around, to show off the unique charms of your home. Sure, there’s more traffic on the roads (get off my daytime wifi bandwidth, home-tourists), but it’s worth it for the investment, improvement and diversion. And it’s bitter-sweet, because you know that soon they’ll be gone: the pubs will be quiet again and the restaurants will close for the season. You will go back to normal, and so will they. Strangers will drive through in stormy Decembers and say, “God, imagine living here.”
Somehow, lockdown feels like a referendum on me. And as it grinds on, there is rising speculation that this cure is worse than the disease: that many would rather take their chances. I’ve heard repeatedly it would be better to be dead than to live like this — like me — for long. That’s difficult.
There’s been recent universal acknowledgement that being stuck at home is bad for your mental health. But those same mental health problems have made me less credible as a disabled person for years; poor mental health has always been used as ammunition to show that people like me are doing something wrong, or are somehow to blame. As if a bad attitude is the real problem. The world is being told over and over again that it’s OK to not be productive right now, to feel frightened and scared and stressed, to have difficulty concentrating or remembering things. We’re told we’re going through a trauma: the trauma of uncertainty. In the depths of my own upheaval and uncertainty and illness, I was told to take up yoga, exercise more, go gluten free, think positively.
I’ll come out with it: this lockdown has been good for me. Admitting this feels wrong and shameful in a context where lives are being lost and livelihoods destroyed. I’m not happy about Covid-19 and I don’t even think there’s a silver lining, but my body has doomed me by beginning to heal a little during this once-in-a-lifetime quarantine. It turns out this lockdown is a perfectly unrealistic controlled environment for rehab. I’ve been able to practise walking on a footpath; social distancing keeps me safe, no can brush me off balance. Everyone is hyper-aware of the bodies around them for the first time.
I’ve felt an extraordinary weight lifted these past weeks. I haven’t had to explain or justify myself; I haven’t had to say no, or cancel (my god, the cancelling) and I haven’t had to push my body past breaking point to keep my personal life ticking over. It’s been weeks since I’ve traded private medical information for access. It’s exhilarating.
Because disability feels to me like guilt. I’m guilty all the time: when I can’t do something, when I can do something else, for being a burden, for being repetitive and boring with my small world, for not ‘hustling’, for not being an inspiring disabled from viral videos. Without it, I realise what that guilt had been taking from me.
But even with this perverse pleasure in a world that’s more my speed, I read about triage practises that amount to eugenics. I talk to my sick and disabled friends who are considered disposable, who don’t share my exceptional good fortune in being safe, secure and cared-for in my own home.
I think of the disabled people in the US, who can’t access their medication because of panic-stockpiling; who have been pressured into signing DNRs in the UK; who are even more isolated now in Ireland, and see and hear their lives being casually weighed up against economic loss, whose deaths would be considered ‘at an acceptable level’, who have no back-up if their carers become ill.
And it’s been difficult learning that — even with all this new access — I’m still disabled. Stuck at home like everyone else, I’m not like everyone else. I’m still not able to stay awake long enough to be good company on Zoom quiz nights. My medicated short-term memory still makes me unreliable and difficult. Everything has slowed down — and I still can’t keep up.
So while the new empathy for being stuck at home is intoxicating, I’m afraid of encouraging a false equivalence — who wants to split hairs when people are being so nice? Memories are short, and I fear for a future where the ableds think they understand — they who could DIY, garden, exercise with YouTube and dance on TikTok to break up the monotony. They who knew it wouldn’t be forever. They don’t know what it’s like when there isn’t a destination.
I don’t like being ablesplained to about how to stay motivated by people who’ve been isolated for a month.
And sometimes I’m angry. I think of my false starts in workplaces over the years, places that could not (would not) employ me from home when it was clear I had no other option. It hurts seeing the measures that were so outlandish, so impossible for me, being rolled out for the ableds so immediately, so effectively, so frictionlessly, so trustingly. It seems that remote working has just now become legitimate, not to be regarded with a nudge and a wink. It hurts when you complain about working from home, when we’ve been pleading for it all our lives and told we weren’t worth the trouble. I’m angry that I don’t need anybody or anything extra now, when there’s so much appetite to help. I’m angry about the times I desperately wanted that.
People say everything will change, that we won’t go on like before, that the world will be kinder. And while the support systems to weather the Covid-storm are heartening, they also feel like a hobby to be taken up during quarantine, like baking or embroidery, which there won’t be time for anymore when ‘things are back to normal’. Because I do believe that we’ll go back to normal. That makes me angry, too.
But for now, for the first time in a long time, my experiences are relevant to normal people. So I’ll enjoy being able to answer some of the questions you’ve been asking about your future: No, you won’t ever go back to proper bras again; Yes, you’ll say really weird things when you’re released into the real world again, you’ll be an absolute social hand grenade. The music in bars will be too loud.
And no, you won’t tell me again how lucky I am to be home all the time.
‘In the depths of illness, I was told to take up yoga, exercise more, go gluten free...’
‘I do believe that we’ll go back to normal. That makes me angry, too’