openDemocracyUK: Feature

‘My world became very small’: People with disabilities on life in lockdown

As the UK reopens, people with disabilities reflect on the difficulties of the past year, from increased health risks to trouble accessing support

Victoria Noble
29 April 2021, 12.00am
With the vaccine roll-out, the UK is beginning to reopen. For many people with disabilities, this period brings a mix of relief and fear
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Monica Wells / Alamy Stock Photo

As the UK begins to reopen, the lifting of lockdown restrictions brings a mix of worry and relief for people with disabilities. The higher risk of death from COVID-19 – around three times greater than for non-disabled people, accounting for nearly 60% of deaths from the virus last year – and additional barriers to accessing support have left many people feeling like hidden victims of the pandemic. Here, disabled people and their carers share their experiences with openDemocracy.

Lara

Lara Ferguson, 22, is a psychology student currently on placement year at NHS England. She hopes to do a PhD on the science of mental illness. As a teenager, she was sectioned and developed anorexia, spending a number of years in and out of hospital. Before the pandemic hit, she was at her happiest – enjoying her course with a supportive group of friends. But, like more than half of all adults, lockdown had an impact on her mental health.

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Like more than half of all adults, Lara's mental health was hit hard by the pandemic | Lara Ferguson. All rights reserved

“Initially I think that lockdown had a really positive impact on my mental health. It gave me the chance to step back and evaluate what was important for me in life.

But, for me, the past two lockdowns have been particularly hard. I was acutely aware of how much the country and other individuals were struggling as a whole. Because there’s been so much talk about the effects that the pandemic has had on people’s mental health, I was cautious that I would be an additional burden for others.

On Boxing Day, I developed [COVID] symptoms so got tested and it came back positive. Being outside, going walking and cycling were things that really maintained my wellbeing. That was suddenly taken away from me. I wasn’t able to interact with my friends and family. Physically, it had a big effect on me too.

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Lara took up painting during COVID, when she was unable to leave the hospital ward to take part in her usual activities | Lara Ferguson. All rights reserved

After Christmas, I had just come out of self-isolation and moved back into my flat alone. I had a lot of time to think and I started to think about the past a lot more. This led my anxiety to skyrocket and my mood to really plummet, and I started self-harming again. The tipping point was when I attended A&E for stitches four times in a week. I was sectioned at the beginning of February.

Being on an in-patient ward during lockdown had a massive impact. We were only allowed one 15-minute walk each day. If you self-harmed or made an attempt at your life, they would take away your 15-minute walk for the following day. It felt like being punished for having emotions and difficulties that were out of your control.

I’ve been met with an awful lot of stigmatising views from healthcare professionals. I think the most hurtful thing was that very recently, I had a clinician who refused to suture a wound for me purely on the grounds that it was self-inflicted. As a result, it got infected.

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Since being in Sheffield, Lara has taken up bird watching and painting birds to 'reconnect with nature and have time to think in a positive way' | Lara Ferguson. All rights reserved

I was so ashamed of what I was going through that I didn’t tell my family. I remember the first morning in hospital, waking up in the awful gowns they give you, on the sticky blue mattress, and my mum ringing. I wasn’t able to take her call because I didn’t know what to say. And I just sat there and cried to myself. It took three days of being in hospital to be able to admit to them where I was.

One of the conditions for my discharge was that I would be moving back in with my family in Sheffield. They’ve really been a rock.

Regardless of the fact that we are experiencing a pandemic, your mental health issues don’t stop. Look out for friends, especially those who are – as I was – putting on that brave face. It’s often those who are hiding their emotions the most that are struggling the deepest.”

COVID and mental health

  • More than half of adults and over two-thirds of young people said that their mental health had worsened during lockdown. A third of adults and a quarter of young people didn’t access mental health support during this time because they felt they didn’t deserve it
  • Nearly a third of those with pre-existing mental health conditions felt suicidal at the beginning of the third lockdown
  • Almost half of UK psychiatrists saw an increase in urgent and emergency cases following the first COVID-19 lockdown
  • Over 35% of disabled people felt increasing levels of psychological distress during the pandemic
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Catherine

Catherine is the mother of Jack, 20, and Dylan, 18, and works full-time in communications. Jack was born prematurely and suffered a bleed on the brain. As a result, he was diagnosed with quadriplegic cerebral palsy, visual impairment, hydrocephalus (which causes fluid on the brain), learning disabilities and epilepsy. Ordinarily, he attends a special needs further education college.

Jack was originally asked to shield, but towards the end of the first lockdown he was told that he was no longer considered clinically vulnerable. Over the past two months, he’s been hospitalised six times to have operations to replace the shunt that removes fluid from his brain.

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When Jack's special needs education stopped because of COVID, his family was left to see to all of his needs | Catherine. All rights reserved

“When March [2020] came along, obviously the first thing we heard was that all the schools were closing. Although Jack could have stayed at college, we decided to keep him at home. It took a long time but we eventually got a letter from the NHS, probably about six or seven weeks into the first lockdown, to say that Jack was considered extremely clinically vulnerable so had to be shielded.

Special needs education brings along with it not just learning but physio, occupational therapy, swimming and art therapy. Overnight, all of those services just stopped. We felt incredibly vulnerable as a family because then we had to see to all his needs.

He suffers from anxiety, which then leads to seizures. With all the daily briefings on the television, he would be impacted emotionally by what was going on. And, of course, we couldn’t leave the house.

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An example of Jack's home-schooling work, which Catherine says has been a 'nightmare' | Catherine. All rights reserved

All of a sudden, our network of medical support just stopped. We had to manage a couple of quite big seizures during that time which was quite terrifying. The only saving grace was our amazing community.

During the latest period, he’s been at home since 17 December. Home schooling has been a complete nightmare. Everyone else is talking about BBC Bitesize or whatever. We can’t access any of that. There’s nothing that we can get online that will help him. The only thing he loves to do on television is watch live rock music! We’ve had a lot of Iron Maiden.

You just feel depressed because you feel like you’re not progressing your child – in fact, you’re kind of holding them back. I’m a very capable, strong and resilient person but the teaching side nearly destroyed me.

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Jack had to be hospitalised during the pandemic, leaving his family terrified he could catch COVID on the ward | Catherine. All rights reserved

The only difference with this [most recent] lockdown is that we have been able to get carers. The second battle of this year was to get the carers vaccinated, because they weren’t recognised as people working in a care home. I had a couple of rows with the doctor about that.

Jack wasn’t at all on [the vaccine list], we heard nothing. In the end, the way we’ve got it for him is on the learning disabilities front.

We’ve been really nervous, because he’s been in hospital for the past three weeks, and it’s just terrifying that he might pick up COVID – and he’s already been incredibly vulnerable from having neurosurgery six times this year. But, thanks to BBC Radio 2 presenter Jo Whiley [who campaigned for people with learning disabilities to be prioritised in the vaccine roll-out] and others, Jack has had his vaccine.

I know everyone’s had a very difficult year but people like Jack have had a tougher year. He brings huge value to society and we just don’t want that to be forgotten.”

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Jack has now been vaccinated, after a stressful period in which he was not initially on the vaccine priority list | Catherine. All rights reserved

COVID and learning disabilities

  • The risk of death involving COVID-19 is almost four times greater for people with a learning disability
  • People with learning disabilities were only offered priority vaccination from 24 February
  • Some 900,000 additional people were added to the original shielding list between 18 April and 7 May 2020. A further 1.7 million people were added in February 2021 – meaning there were periods when millions could not access state support for shielding even though they might have needed it
  • Over 60% of disabled people said they had struggled to access food, medicine and necessities during the pandemic
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Madhubanti

Madhubanti Bhattacharyya, 35, is a senior editor for the Institution of Civil Engineers and lives with her husband in west Sussex. She has endometriosis – and in 2016, was diagnosed with ME (also known as Chronic Fatigue Syndrome) after over a decade of seeking medical treatment. ME does not currently qualify for priority vaccination. Campaigners are challenging this with evidence that they say shows the condition is exacerbated by COVID-19.

“If I get COVID, I will definitely get it badly. My past experience tells me that I get even the common cold really badly.

There is an acknowledgement that many of the symptoms of long COVID sound like an ME flare-up. I’ve had so many of these flare-ups.

You feel like your brain is made of cotton wool. People are saying things to you but you’ve somehow lost the ability to convert the sounds. There have been occasions in the middle of an ME flare-up where literally sitting up in bed has been beyond me.

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Madhubanti, who has ME, spoke of how 'demoralising' it is to have doctors decide she is the wrong kind of sick to be 'worthy' of a vaccine | Madhubanti Bhattacharyya. All rights reserved

The ME Association tried to advocate for me to be included in vaccination priority group six, but while other GP surgeries have used their discretion to agree to the inclusion of other people with ME, my surgery refused.

It’s demoralising to realise that, despite them having access to my medical history, my own doctors have decided that I am the wrong kind of sick to be deemed ‘worthy’ of a vaccine, when it would enable me to feel less cripplingly anxious about leaving the house.

With illnesses like this, it’s sometimes hard to get up in the morning. When you feel like your care provider is like: ‘Who cares?’, it makes it even harder.

While lockdown has been very hard, I am feeling more panicked about things opening up.

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A letter to Madhubanti explaining that she is not yet eligible for the COVID vaccine | Madhubanti Bhattacharyya. All rights reserved

It's not that I would suddenly have a street party once I got vaccinated, but at least if I had to go down to the shop for a pint of milk, I wouldn't make it a massive production in my own head about: ‘What am I touching? Who am I breathing on? Who's breathing on me?’

It feels even more cruel to be constantly receiving information about low BAME take-up of the vaccine, reminders that I am high-risk because I am a member of the BAME community, and then actively being thwarted receiving support. It’s like the diagnosis process all over again: be disbelieved, be dismissed.

Saying it’s ‘just’ people with underlying health conditions [who are at high risk of COVID] makes me so angry. At what point did we make the decision that disabled means less worthy of life?”

COVID and ME

  • ME affects around 265,000 people in the UK, with 25% of these being severely affected – either being housebound, bedbound or needing a wheelchair
  • In most cases, ME is triggered by an event such as an infection and research has shown people with ME have significant abnormalities in their immune system
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Dai

Dai O’Brien is a senior lecturer in British Sign Language (BSL) and Deaf Studies at York St John University. He is deaf and bilingual in English and BSL. He lives in York with his family.

“My world has become very small. It’s just my immediate family. For most hearing people, even visits to the shops are momentary expansions of your social world because you get to exchange a few words with the cashier or shop assistant when you’re out. Those opportunities for incidental interaction aren’t available to me or many other deaf people. Most hearing people can’t sign, so we don’t have the opportunity for those serendipitous exchanges that can brighten your day.

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Dai says he, like many deaf people, missed out on even incidental interactions during lockdown, as most people don't know sign language | Dai O'Brien. All rights reserved

I really miss meeting up with other deaf people as well. Deaf conversations in BSL are exciting, living things. Stories and jokes fly through the air from all directions. You need to be on your toes to take in these spontaneous interjections and interruptions, which you just can’t do on a video platform.

On a personal note, it’s also been confusing. The lack of information in BSL has been a big factor in this. No BSL on the main channels for the COVID briefings in England and other announcements means that the most immediate, live information is inaccessible for many deaf people. The education system in the UK has failed deaf people for many, many years, which means that many have poor comprehension of written English. This means that subtitles aren’t an accessible adaptation for them.

I’m lucky that I do have a good level of English, so can access information that way. Even so, live subtitles are often appallingly inaccurate. I gave up watching the COVID briefings very quickly. But this means that I’m behind everyone else in knowing what’s going on.

It's bad enough when everyone is un-masked and you have to strain to lip-read... but with masks on? Impossible

One of the worst single experiences of exclusion I personally had was at an audiology appointment where everyone wore masks, and audiologists were coming into the waiting room and shouting out people’s names from behind their masks, expecting us to hear (in an audiology department!) who was being called. That’s bad enough when everyone is un-masked and you have to strain to lip-read them shouting names, to try and catch your own, but with masks on? Impossible. In the larger scheme of things, that probably seems pretty small, but that’s the sort of barrier deaf people face innumerable times every single day. It all adds up.

I have to add, of course, that not all people who are deaf use BSL. People who rely on lip-reading have it much harder than those of us who sign when they try to communicate while everyone is wearing masks.

It definitely feels like signing deaf people are down towards the bottom of the list when people think about creating accessible information. That has been a massive let-down.”

COVID and deafness

  • There are 151,000 British Sign Language users in the UK, and for 87,000 of these it is their preferred language
  • One in four people with disabilities feel they have been forgotten by the government during the pandemic
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