Lockdown is nothing new for Disabled people

Lockdown is nothing new for Disabled people

Lockdown is nothing new for Disabled people

Freya Papworth

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I have a confession to make. I know that lockdown is really hard for a lot of people, but for me it’s been rather easy, even surprisingly pleasant at times. It’s not that I’m special or particularly privileged, it’s down to the sad fact that over the past decade, at least once a year I’ve had to go into involuntary lockdown thanks to my health. And I am not alone in this experience, which is why I am protesting today for those who need care and for those who provide care to be recognised. 

I first experienced lockdown after I broke my back. Unable to wash or dress myself, and with a partner who worked 12 hours a day, every morning my carer would get me up and onto the sofa. There I would stay until my boyfriend came home, made me dinner, and helped me back to bed. The time I spent alone in my house was mentally devastating. My family encouraged me to go for walks on my crutches, but they didn’t understand the fear I felt at suddenly being unable to trust my own body to keep me upright. So instead I sat watching DVD box-sets and slowly losing my mind. My world revolved around my carer for one hour in the morning, and my boyfriend’s return 10 hours later. 

My carer for those initial months was my lifeline. I had someone to talk to, to moan to, and to cry with when the pain or loneliness got too much. We bonded in that special way women do when brought together by trauma. The more we bonded the more I learnt about her life: She was on minimum wage, drove a car that barely worked but was her only way to get to work, and she had a husband who hit her. She was stuck because she couldn’t afford to leave him and care for her children, so while she helped me I would listen to her story and offer whatever advice I could. What I really wanted of course, was for her to be paid a decent wage that recognised her skills and that would give her some real options. 

Over the next decade I experienced many relapses as pain became an all consuming part of my life. Roughly once a year I withdrew completely: stuck in bed or on the sofa with Netflix and a box of painkillers. I had to battle to work from home, I was yelled at by various bosses for taking time off, and was accused of getting ‘special treatment’ by my colleagues. I missed countless birthdays, group holidays, and christmas parties. No one facetimed me for a drink, held a remote pub quiz, or live streamed their DJ set to my front room. 

My ‘new normal’ firmly established itself: a few weeks or months getting by and managing the pain and now fatigue that was creeping in, followed by an event that would set off a flare up. I quit clubbing, going to gigs, and I cancelled on more social events that I can remember. Every time I leave the house I am risking a flare up, and so slowly I found myself living a life where often I wouldn’t leave the house at all except to go to the supermarket. 

As we begin to contemplate a national ‘new normal’ with  lockdown measures set to ease, I hope the efforts people have gone to to stay connected carry on into a more inclusive future. I hope employers realise that  working from home is not a weakness or a ploy to watch tv. I hope that people have more sympathy with the fatigue that comes from being in regular lockdown. And I hope that we can work together to put care at the heart of our national recovery. I may not be able to march today, but as soon as I am finished typing this I shall be digging out my paints and making a placard. I couldn’t help my carer back when I was first in lockdown, so today I shall fight this fight for her, and the army of carers still looking after your friends and family.

  
        
  

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