Opinion

Covid pandemic forever changed disabled people's lives. History must never be repeated

On the anniversary of lockdown, a disabled woman shares her story and how people's lives were forever changed by the pandemic. She warns that the government must learn lessons from this, or the impact could, once again, be catastrophic

Disabled people in the pandemic/ Natalie

Natalie Williams, was diagnosed with Usher syndrome, a condition which causes hearing and sight loss, in 2012. Image: Sense

For many people, the Covid-19 pandemic is just a distant memory. Their lives feel back to normal. But four years on from the start of lockdown, I want to speak up for the disabled people up and down the country whose lives have been forever changed by the pandemic, and who could only wish the experience was a distant memory. 

Before the pandemic hit, I was living in Wales with my husband and daughter, with a second baby on the way. I was still coming to terms with a diagnosis of Usher syndrome, which causes deafblindness, that I’d received in 2012. I’d been living with hearing loss since I was a toddler, but to be told in my 20s that my sight would be affected too – that came as a huge shock. 

It’s safe to say this diagnosis rocked my confidence, but by early 2020, and with the support of national disability charity Sense, I felt as though I was starting to get a part of my old life back. I’d begun taking public transport by myself again, building up my confidence enough to go out alone with my cane. 

That all came crashing down in March 2020. 

After months taking baby steps towards building up my independence, suddenly we were plunged into lockdown and no-one could leave their house. I know this was the case for everyone and not just disabled people, but for me there were other challenges.  

Because I rely on lipreading, it was impossible for me to communicate with people wearing masks. I can’t hear well enough to use the phone, or see well enough for video calls, so I couldn’t keep in touch with people and felt totally isolated. I couldn’t understand the government’s briefings on the TV because they didn’t include BSL interpretation, which made me feel even more left out and unsure about the future. My deafness is not something that ever bothered me before, but now it felt like a real challenge to navigate. 

If that wasn’t enough to deal with, I had a baby during the height of the pandemic, so me and my husband were back and forth to the hospital. Thinking back to those appointments, where everyone was wearing masks and I didn’t know what people were saying, still upsets me to this day. 

The headlines about how many disabled people were dying from Covid-19 were horrific. More than half of the people who died from the virus in 2020 were disabled, yet I’m not alone in feeling totally forgotten about in the government’s response — more than half (53%) of disabled people told the charity Sense that they felt ignored during the pandemic. Disabled people faced a higher clinical risk, reduced care and support, increased barriers to accessing the essentials like medical appointments and groceries – the list goes on. 

The feelings of isolation, loneliness and being forgotten, coupled with being a new mum, boiled over. My anxiety levels went through the roof, and I hoped once restrictions started easing, so would my anxiety. Yet, four years since the UK went into lockdown, the scars are still there. 

Sometimes it feels like everyone else around me is moving on, but I’m still stuck on the treadmill. I’m too anxious to go anywhere, to do anything. For me it feels like we’re still in the middle of the pandemic.  

The Covid-19 inquiry could provide the perfect vehicle for the government to truly learn from its mistakes, and not just for potential future pandemics. The response to the pandemic reflects wider inequalities across society that have persisted for years, and Covid should be a wake-up call that disabled people need to be at the heart of government decisions and policies to make sure history doesn’t repeat itself. 

But I do find it hard to be positive. I want the government to do more to engage with disabled people, to let them know they’re not excluded, and to understand how its response to the pandemic has had lifelong effects on disabled people like me. I hope this four-year anniversary, though difficult and traumatic for me, will provide this important moment of reflection. 

Natalie Williams, 41, lives in Wales with her husband and two daughters. In 2012 she was diagnosed with Usher syndrome, a condition which causes hearing and sight loss.

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