“What people didn’t see before Covid-19 is that isolation is traumatic.”
Madeline Williams, a former secondary school teacher, can barely make it from her bed to the sofa. Some days, she has to crawl. She lives with symptoms of a condition known as dysautonomia trifecta, which causes severe dizziness and unstable joints. Before she fell ill, she says, her “students were my world”. She finds the “loss of autonomy” worse than the pain she experiences from her condition.
The news is rife with stories of isolation at the moment. The jaunty ableism of newspaper columnists (“Self-isolation sounds like heaven” ) is fading into fear, as we realise that we can’t dress isolation up as an artistic retreat. Not hugging another person for weeks is grim. Leaving the house only at rare and restricted times is frightening. It’s a life that housebound and disabled people have experienced, invisibly, for decades.
Except that it isn’t really what housebound and disabled people have experienced. Because the experience of healthy people self-isolating for a few weeks is not comparable to the abuse, disbelief and financial punishment many chronically ill people face while cut off from society.
In a press briefing on the 8 April, Rishi Sunak called the coronavirus “indiscriminate” in who it attacks. But many people with disabilities now also face death, as the lockdown obliterates already grossly underfunded social care. The inequalities of regular society are reproduced in the world of Covid-19, subjecting disabled people to even worse outcomes than before.
Anna Tyler, chair of the board of trustees for Vision Foundation, tells me about a deaf-blind woman who, after testing positive for Covid-19, was refused care. “She needed to see a GP, but there was no interpreter available, because it’s a tactile occupation,” she says. “So this woman had no access to health services. The GP just said, ‘Sorry, can’t help.’”
Jon Abrams, campaigns and justice officer for Inclusion London, tells me that disabled people are struggling to get food. Many who relied on online food deliveries for years are now unable to get slots. “Unless you’re on the medically high-risk government register, it’s very hard to get priority registration”, he says. “But what if you’re visually impaired? Trying to navigate a supermarket and social distancing puts you at risk.”
Abrams tells me about people who need assistance with eating, washing and dressing now losing their carers due to the government’s call to self-isolate.“We’re beginning to see gruesome reports on the lack of personal protective equipment going to carers and disabled people. But if you need help washing and eating, which is close-contact, you don’t have any choice. You can’t avoid the risk”.
It’s clear, as the virus increases its grip, that the government has not envisioned a world in which people can’t leave their houses and go to the supermarket once a week. It has not considered situations in which people rely on daily carers for the basics of life, and that those carers need protective equipment to halt the spread of the disease.
“This idea that we’re protecting the vulnerable is utter nonsense,” says Tyler. “The shutdown of services has put disabled people at even greater peril.”
She tells me about disabled people who have now lost their only contact with the world – a phone call with a volunteer once a week. About blind people who, instead of their usual services, are getting letters from the council which they can’t read, telling them to call a number which is permanently engaged. She speaks of older, disabled people, with no access to the internet, who are relying only on old-style radios and televisions for company.
“If they press the wrong button, or the tuning gets messed up, there’s no one to come round and fix it,” she says. “So what do they do instead? They sit at home, and they rot. They’re condemned to weeks of silence.”
Tyler is afraid, she says, because the disabled people who will suffer the most from the shutdown of services are the ones with the least recourse to complain afterwards (if they survive). She recalls the doctor who told her, as a partially sighted woman, “With your eyesight, it’s better not to live too long”, and she wonders: who decides the value of a disabled person’s life, if they’re hospitalised with Covid-19?
The speed at which we’ve moved whole cultures online in the Covid-19 crisis is astonishing, and frustrating for the disabled people who have routinely been denied such accommodations. Online book clubs, churches and pubs are springing up, attempting to alleviate the loneliness of people stuck inside. Within hours of the government’s call for social distancing, companies moved meetings and communications to Skype and Zoom.
“Why does it take a whole nation to be in lockdown for these things to happen?” asks Chris Nixon. A former social worker, she’s been mainly housebound with chronic illness for 15 years. “Are the chronically ill and housebound not deserving of these things in their own right?”
Jenny Rowbory, a poet and blogger who has had ME and Ehlers Danlos syndrome for 15 years, echoes this. “All the things that I haven’t had access to while bed-bound are suddenly magically possible now that abled people want them.
“Plays are available for streaming online. Universal Pictures are making cinema releases to watch at home. It’s upsetting, because before coronavirus, there was already a whole population of people who needed these things.”
There’s a flood of advice on surviving lockdown at the moment, from everyone from astronauts to psychologists, and people who have had a week alone in their flat. Yet very few of us can imagine real isolation.
“I’m invisible, behind closed doors. I’m incarcerated in my own body,” says Nikki Clarke, who fell ill with an unnamed neurological condition thought to be genetic, when she was a student at Central Saint Martin’s in London.
“This government has taken so much away from disabled people. You’re made to feel redundant. So many sick and disabled people have been driven to suicide, or had their conditions worsened from stress.”
We’re missing the crucial voices of the elderly and those isolated through chronic and mental illness – many of whom have lived a solitary life for far longer than a few weeks – with only the television to substitute as a human voice.
“Now that everyone else is in this situation, I’m not noticing any consultation with disabled people,” observes Tanya Marlow, author of Those Who Wait, who has only been able to go out every two weeks in a wheelchair for a decade.
“Imagine that society is this great, walled city which disabled and chronically ill people are shut out of. We’ve had to make our own temporary lodgings outside. Now, the people who’ve said, repeatedly, ‘No we can’t bring our services into your tent’ have now flooded our tent. They’re taking over the organisation of it, and ignoring the expertise of the people who live there.”
“When Boris Johnson introduced herd immunity, to people like us, it felt like culling”, says Clarke. “I called it the ‘culling phase’. And there’s this collective fear among people with disabilities about whether we’ll get the care we need in hospital. It felt like we were dispensable – but no life is dispensable.”
“Later this year, most people will walk away from social isolation,” adds Williams. “I won’t. So many others won’t. I’m guessing that, at the moment, most of the world is anxious to return to their life. I plead that the world remembers that some of us have felt that same ache for years and decades. This isolation will never be over for us.”