Ian Rankin: 'Why does it take celebrity voices for disabled people to be heard?'

Scotland’s pre-eminent crime writer joins broadcaster Jo Whiley berating ‘woeful’ treatment of people with learning difficulties over Covid

Kit Rankin just loves being around people, says his father, Ian. “He loves hugs and if you go near him you’re getting a hug whether you want it or not.

“He’s better known around the streets of Edinburgh than I am,” adds the crime novelist with a wry laugh. “People stop me and say ‘Oh, you’re Kit’s dad’, because when he’s taken out to do the shopping everybody notices him because he’s blond and he’s laughing.”

But the 26-year-old, who has Angelman syndrome and lives in a care facility close to the family home, also requires 24/7 support. As his father says: “Kit can’t dress or feed himself, he can’t sign or speak, he uses a wheelchair, so he is very dependent on other people, but other people seem to be great with him.”

This week, Rankin has spoken of his deepening frustration at the “woeful” lack of information on the Covid vaccine rollout for people with learning disabilities, after revealing his son is still awaiting his jab. He raised concerns that this cohort has been “forgotten” by politicians and the media, just as broadcaster Jo Whiley described the “nightmare” of being offered the vaccine before her sister, who has a learning disability and diabetes. Frances Whiley has since been admitted to hospital with coronavirus.

“Some charities have been talking about this for a while and trying to get their voices heard,” Rankin says, “but sometimes it needs someone with a public voice to come forward and then people take notice.”

“I don’t blame the general public for not realising this is going on. When they hear on the media that care homes have been vaccinated they go ‘oh good, the vulnerable are no longer vulnerable’. And those of us with young adults with special needs and disabilities are going ‘it just isn’t like that’. It does seem an anomaly that where Kit lives was classified as a care home when it came to lockdown procedures but wasn’t when it came to vaccinations.”

The risk of death from coronavirus for those with a medically diagnosed learning disability is 3.7 times greater for both men and women than for people without. While those with a “severe or profound” learning disability are in priority group six for the vaccine, which is being targeted now, Rankin says that this anomaly reflects a broader lack of understanding about the challenges of the pandemic for people like his son.

When Kit’s care facility was first locked down last March, contact over Zoom was little use for the young man, who is also registered blind.

“Devices and screens just don’t work for a lot of people with learning disabilities and in fact it can be worse for them because they get confused, they hear your voice but they don’t see you and they think where are you, why are you not giving me a cuddle? From the families I’ve spoken to, that can be problematic.”

Although one family member was later allowed to visit Kit indoors wearing full PPE, his parents and brother preferred to visit together in the garden, or to see him through the gate. He finally got the “big hugs” he loves on Christmas Eve, when he was allowed home for one day, the first time he had left the facility for nearly a year.

Rankin is blunt about the necessary but painful trade-off between safety and contact. “If one of your family members has got severe special needs, you’ve got enough on your plate. It’s just an extra layer of hassle and bureaucracy, when you spend your life surrounded by hassle and bureaucracy.

“I appreciate it’s all for the best,” he adds, “to keep people safe who are very vulnerable and it’s done the job. Nobody in Kit’s facility has had a whiff of Covid, neither staff or clients. But it’s come at a cost. All Kit’s treatments and therapies have stopped for the past year. Apart from the little trip at Christmas to see us he’s literally not been outside the gates.”

While some of the clients at Kit’s facility have now had their first vaccine, Rankin says he still has no idea when his son will be offered one.

He is perplexed, he says, by the priority list whereby his son can expect to be vaccinated just ahead of his parents “who are physically active able-bodied 60-65-year-olds”.

“Yes the government have taken advice, but nobody got in touch with us or his carers and said tell us more about Kit’s condition. I just don’t know how they’ve gone about creating this list that decides some clinically vulnerable people are two tiers below other clinically vulnerable people.”

While Kit remains content, Rankin believes other housemates have found the pandemic much tougher, missing their weekly shopping rota, trips to the football and birthday parties. “They know the outside world is going on without them and they’re not sure why that should be, why has everything changed? Very few of them in that facility have speech, so it’s hard to get it across to them. And a lot of the routines that gave their lives shape and meaning have been taken away.”

“What the staff are doing wonderfully well is making sure they are well looked after and feel loved and have people around them; it’s just not their families.”

• This article’s headline was amended on 22 February 2021 to be consistent with Guardian house style.


Libby Brooks Scotland correspondent

The GuardianTramp

Related Content

Article image
Ian Rankin hits out at lack of Covid jab advice for people with learning disabilities
Crime writer accuses governments of ignoring people like his 26-year-old son, who is in a care home

Libby Brooks

17, Feb, 2021 @3:37 PM

Article image
Disabled people left off coronavirus vulnerable list go without food
Large numbers excluded from government’s food delivery scheme due to strict criteria

Frances Ryan

19, Apr, 2020 @3:15 PM

Article image
Covid lockdown opening up world for people with disabilities
Many people able to take part in work, culture, or socialising from their own home for first time

Frances Ryan

20, Apr, 2020 @10:27 AM

Article image
UK coronavirus rules relaxed for people with autism and learning disabilities
Policy updated after lawyers challenge ‘discriminatory’ lockdown measures

Amy Walker

14, Apr, 2020 @11:56 AM

Article image
Covid deaths for people with learning disability in England six times average
Campaigners say report on first wave shows government failed to protect the most vulnerable

Matthew Weaver

12, Nov, 2020 @1:56 PM

Article image
Benefit changes leave disabled people facing poverty, charities warn
Hundreds of thousands of disabled and ill claimants left out of UK coronavirus measures

Patrick Butler Social policy editor

30, Mar, 2020 @4:26 PM

Article image
Ian Rankin to complete William McIlvanney’s final novel The Dark Remains
Due out next year, the novel will see the Rebus creator fill out notes for another Laidlaw mystery left by the revered Scottish crime writer on his death in 2015

Alison Flood

05, Dec, 2020 @6:01 AM

Article image
UK ministers accused over impact of Covid on minorities and disabled people
Labour asks watchdog to investigate ministers for breaching Equality Act

Haroon Siddique

19, Oct, 2020 @7:00 PM

Article image
Homecare workers in England still not being tested, say families
Vulnerable people ‘playing Russian roulette’ as carers have not had Covid tests

Robert Booth Social affairs correspondent

27, Jan, 2021 @3:56 PM

Article image
Helpless and bereaved: how Covid separated blind couple after 47 years
Peter Wilkins calls for hospital and care home visits to resume in England after death of his wife, Linda

Helen Pidd North of England editor

23, Oct, 2020 @1:36 PM