How disabled people are problem-solving in the pandemic

Singer Ruth Patterson sitting in her basement

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Ruth Patterson

As people in the UK continue to respond to the challenges of personal isolation, a community is helping itself to find solutions to the complexities that most shouldn’t be thinking about.

People with disabilities have spent years finding alternative solutions to inaccessible situations, and now, during the current coronavirus crisis, a group has emerged making fun of ideas such as using an intelligent speaker instead of an assistant.

Welcome to the bunker.

The Facebook group has been active for a few weeks but teems with shared personal experience or “lived experience”.

Many members depend on personal assistants (PAs) who visit their homes to help with care. But when self-isolation started, many faced a clear choice: to allow those who take care of themselves at home and put themselves at risk, or to stop taking care and suffer from indignity, discomfort or worse. And of course, caregivers are also at risk.

One of those who posted on the group’s page was Chris, from Northern Ireland, who has rheumatoid arthritis and stage four breast cancer.

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Scientific photo library

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Some disabled people have given up on home care visits for fear of becoming infected

He published that he had renounced home care as a trial due to infection. “I was unable to cope with the uncertainty of not knowing where my PA had been!” she wrote.

Temporarily giving up on home support is scary and may raise your eyebrows or suggest that you may not need it, but times are different. “We have been reassured that we will not permanently lose support and will be able to reactivate if it is too much,” he says.

Disabled activist Dennis Queen created the group after some of his friends’ PAs stopped visiting them for fears that they might contract or transmit Covid-19 – “We are bunkering so we don’t get it,” he says.

The group already has over 500 members and the shared board is often frank.

March was the month of the Free Wills for the over 55s, and the links for the program were shared with gratitude and there are suggestions for the APs on how they can adapt their behavior to continue home visits as cleaning and cleaning measures. protective equipment.

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Dennis Queen

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Dennis Queen says the company is the key to the bunker

March was the month of the Free Wills for the over 55s, and the links for the program were shared with gratitude and there are suggestions for the APs on how they can adapt their behavior to continue home visits as cleaning and cleaning measures. protective equipment.

In a post about reducing visits by healthcare professionals to your home, one person revealed government guidelines on direct payments and the flexibility around the technology mentioned in non-human help for those who have conditions like epilepsy or breathing difficulties.

After talking to social services, it was agreed that he could use his emergency budget to buy an Echo Show smart speaker with video so that people could monitor it from afar.

It is a simple and relatively inexpensive solution with evidence that it worked for others.

Members find sharing their cathartic stories and appreciate a community where they don’t have to explain too much.

“The creators, the administrator and those who spoke to me when I needed it are legends,” published Elle. “It helped me know that I’m not completely alone.”

Dennis says that the company is a key feature of the group.

“It’s about providing emotional support because people are worried. We are destroying that loneliness.”

Musician Ruth Patterson, of the band Holy Moly & The Crackers, has Ehlers-Danlos syndrome which affects the connective tissue of the body causing chronic pain and fatigue. It is supported by three PAs and her husband.

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Ian West

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Ruth Patterson says disabled people had to be resistant

She says her experiences helped her cope with the pandemic and, after canceling her indie-folk band tour because of Covid-19, wrote on the blog that people with disabilities are “probably the most resistant you know right now. “

He says: “When you live with extra challenges like chronic pain, loss of mobility, sight or hearing and you have to live life differently because of any form of disability, you have to adapt.

“There is no choice but to be strong every single day, even if we don’t feel it.”

It is not just The Bunker that draws on the collective knowledge of living in isolation for health reasons that other Facebook and WhatsApp groups have emerged across the country.

Ruth says, “I saw on our local community Facebook group that currently unemployed non-disabled people are offering to deliver supplies to the elderly and disabled and have a chat with a cup by the window, if they can. How nice, what selfless to do.

“It makes me feel really empowered right now, as if we could face it if we work together,” he says.

Ruth and her husband are protecting – not leaving the house for 12 weeks – because of her weak immune system. So they got creative so that their PAs can continue to support them at home.

“My bedroom window can be opened like a large door, so the other night I chatted with one of my lovely PA / best friends outside the window while sitting outside. He cheered us both up.”

For Dennis, sharing solutions is the foundation of the disability community.

“People can’t imagine they want to be us,” he says. “What they don’t understand is that if they become like us, even if it is difficult, they will soon find that they are well.

“We find ways to get around it until we are massively neglected.”

Ruth’s advice for self-isolation

  • For personal assistants: extra hand wash, gloves and hand sanitizer when they arrive
  • Stop the catastrophe: you have no control over the situation
  • Do one thing a day, whether it’s sending an email or writing a text
  • Acceptance is paramount: many disabled people say that the day they accepted their circumstances proved to be a turning point.

If you are thinking about changing healthcare, you should always consult your usual medical advisors.

can follow Harry on Twitter. For more news on disability, follow BBC Ouch on chirping is Facebookand sign up for Podcast.

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