Covid and disability: Ive lost two stone because I cant get food

Covid and disability: Ive lost two stone because I cant get food

On an average day before the pandemic, Dr Caroline Gould said it would take a 200-mile round trip to acquire all the groceries needed for her bespoke diet.

A resident of Broadford on the Isle of Skye, Caroline has a severe form of Ehlers-Danlos syndrome, which means her body lacks collagen and her joints are prone to dislocating.

She last counted between 40 and 50 dislocations in one day.

To manage the condition, Caroline keeps to a very strict diet and buys food from a number of different shops around the island – a routine that has been significantly disrupted throughout the pandemic.

“I’ve now lost around two stone (12.7kg) in weight,” she told the BBC. “A lot of time has been spent searching online trying to find certain foodstuffs.

“I simply couldn’t get the foods I needed. It has been really stressful and difficult.”

A previous BBC investigation heard that not enough consideration was given to disabled people and their complex needs when lockdown came into effect – and this was having a continued impact over the summer.

Caroline, who was one of the 180,000 people in Scotland shielding from March, said this was particularly evident in rural communities which have less frequent grocery deliveries than cities.

In her area she said there were lots of small shops, but not all are accessible – and while some do deliveries, they “don’t hold big enough stock” to meet everyone’s needs.

“People in rural situations haven’t been thought of by people in cities who make the decisions,” she said. “They just seem to have assumed if it works in the city, it works everywhere else.

“Only one supermarket delivers to the door in some of Skye – not all of Skye.

“I think there’s been very little indication by either Westminster or Scottish governments that they show any understanding for disabled people.”

As an accessibility auditor for Skye and Lochalsh, Caroline regularly hears about the experiences of vulnerable people and those with disabilities in the local community.

She said because it was common for people in rural areas to have multiple jobs, people who required home care on Skye had chosen to reduce their service in case carers picked up the virus elsewhere.

Caroline also said she and others had struggled to get information from the NHS about their care because staff were “so busy” dealing with the pandemic.

She said: “I think the thing a lot of people have had to cope with has been loneliness.

“A lot of the feeling that I’m getting from other disabled people contacting me, is they feel their life has no value and their needs haven’t been considered and they have struggled and struggled and struggled.”

Over the course of the pandemic the BBC has heard from many people living with disabilities about the difficulties they have faced as a direct or indirect result of measures put in place to cope with coronavirus.

Disability lawyer Daniel Donaldson, principal solicitor at Legal Spark, has now said he will “likely” pursue a judicial review of the Scottish government’s actions which allegedly discriminate against disabled people.

He told the BBC that the government had failed to carry out the law in line with the Equality Act and effectively “retrograded disability equality”.

“We’re back in the position we were in in 1970s,” he said. “That’s all a consequence of government and other public authorities ignoring the Equality Act and being able to get away with it because no one is willing to enforce legislation.”

Even out with the pandemic, Caroline is reminded of equality issues in her daily work assessing buildings on accessibility – she is concerned that Scotland is failing to make basic standards “future proof”.

She said: “I think it’s going to be very difficult for disabled people to get their rights. The minimum building standards only allow a 1.5 metre turning circle for a wheelchair yet we have wheelchairs here that use 2.2 metre turning circles.

“Things are passed through building works that are never going to be future-proofed because over time wheelchairs are getting bigger and bigger because they carry more equipment.

“If we’re going to build for the minimum standards, we’re never going to achieve anything remotely like what disabled people need.”

You can hear more from Caroline and many other people in Scotland living with a disability in Disclosure’s special report on BBC Radio Scotland.

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