Monday, May 23

Ian Rankin: ‘Why are celebrity voices needed for the disabled to be heard?’ | Ian Rankin

Kit Rankin loves being around people, says her father Ian. “He loves hugs and if you get close to him they give you a hug whether you want it or not.

“He’s better known on 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 they take him out shopping, everyone sees him because he’s blond and laughs.”

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

This week, Rankin has spoken of his deepening frustration at the “regrettable” lack of information about the launch of the Covid vaccine for people with learning disabilities, after revealing that his son is still awaiting his injection. He expressed concern that this cohort has been “forgotten” by politicians and the media, as well as broadcaster Jo Whiley described the “nightmare” of being offered the vaccine before his sister, who has a learning disability and diabetes. . Since then, Frances Whiley has been admitted to the hospital with coronavirus.

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

“I don’t blame the general public for not realizing this is happening. When they hear in the media that nursing homes have been vaccinated, they say, ‘Oh well, the vulnerable are not vulnerable anymore. And those of us with young adults with special needs and disabilities say ‘it’s just not like that’. It seems an anomaly that the place where Kit lives has been classified as a nursing home when it comes to confinement procedures, but it was not when it comes to vaccinations. “

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The risk of death from coronavirus for those with a medically diagnosed learning disability is 3.7 times higher for both men and women than for those who do not. While people with a “severe or profound” learning disability are in priority group six for the vaccine, which is now being targeted, Rankin says this anomaly reflects a broader lack of understanding about the challenges of the pandemic to people like your son.

When Kit’s care center was closed for the first time last March, contact via Zoom was of little use to the young man, who is also registered blind.

“Devices and screens just don’t work for many 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 you are, why aren’t you giving me a hug ? From the families I’ve spoken to, that can be problematic. “

Although a family member was later allowed to visit Kit indoors in full personal protective equipment, his parents and brother preferred to visit him together in the garden or see him through the door. She finally received the “big hugs” she loves on Christmas Eve, when she was allowed to come home for a day, the first time she had left the premises in nearly a year.

Rankin is frank about the necessary but painful balance between security and contact. “If one of your family members has serious special needs, you have enough on your plate. It’s just an added layer of hassle and bureaucracy, when you spend your life surrounded by hassle and bureaucracy.

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“I appreciate that everything is for the best,” he adds, “keeping people who are very vulnerable safe and that has been met. No one at Kit’s facility has smelled Covid, not the staff or the customers. But it comes at a cost. All of Kit’s treatments and therapies have been stopped for the last year. Aside from the little trip over Christmas to see us, he literally hasn’t been out of doors. “

While some of the clients at Kit’s facility have already received their first vaccination, Rankin says he still “has no idea” when his son will be offered one.

He is perplexed, he says, by the priority list according to which his son can expect to be vaccinated just before his parents “who are physically active and healthy people aged 60 to 65”.

“Yes, the government has accepted the advice, but no one contacted us or her caregivers to tell us more about Kit’s condition. I just don’t know how they went in creating this list that decides that some people clinically vulnerable are two levels below other clinically vulnerable people. “

While Kit is still happy, Rankin believes other housemates have found the pandemic much more difficult, missing their weekly rotation of shopping, trips to soccer and birthday parties. “They know the outside world is going by without them and they are not sure why it should be like this, why has everything changed? Very few of them in that installation have a voice, so it is difficult to make them understand. And many of the routines that gave shape and meaning to their lives have been taken from them. “

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“What the staff is doing wonderfully well is making sure they are well cared for and feel loved and that there are people around them, but not their families.”

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