Christmas is a “special time” for Keith and Helen Butler – it’s when they met their beloved son Geordie.
“[Social services] said, we’ve got this little boy, 17 months old. It’s going to be his only Christmas. We don’t want him to be in hospital for his only Christmas. Will you take him?” Keith recalls. “By the time new year came we said, ‘He’s not going back.’”
Now 22, Geordie is deafblind, autistic and has CHARGE syndrome – a complex genetic condition that can lead to multiple severe disabilities. He’s “blossomed”, his father says, defying the expectations of doctors.
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This year is the first Christmas that the family won’t spend together. But as the cost of living crisis bites, Keith, 72, is relieved.
“Helen is going into hospital on 19 December for an operation. I don’t want to seem callous, but she will be in for weeks and that will save us money over the most expensive time of the year,” he said. “We don’t mind going without, not one bit, but Geordie will never go without, not on our watch.”
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Disabled people and their families are some of the hardest-hit by the cost of living crisis, as grim new research by the national disability charity Sense reflects.
Some 33% of disabled people told Sense that they will not celebrate Christmas this year because of the financial pressures. More than a third (34%) said they will not see any friends or family or buy any festive food (37%).
Almost half (48%) of the survey’s 1,005 UK respondents said they won’t buy any presents, while two-in-five (42%) will not turn on any festive lights because of fears around the cost of energy.
The sobering new findings are “no surprise”, said Richard Kramer, chief executive of Sense.
“Every day, disabled people are having to make impossible choices, like whether to eat or heat the home,” he said. “And Christmas, far from being a time for celebration, has just become an additional, unbearable expense.”
For the Butlers, the costs of caring for Geordie are mounting. They must charge and run a feeding machine, operate a specialist bed, and keep the house warm because he is susceptible to illness. The couple pay £2,250 a year to get him to day services at Sense Touchbase Pears in Birmingham, the closest group that can support him.
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Christmas is particularly difficult, as Geordie doesn’t understand that “Santa has a budget”.
“When he sees his presents under the tree, he’s so happy, he’s excited beyond belief,” Keith says.
“We can’t take that from him, so no one else will be getting a present. His three older siblings will only have a token gift, and likewise our six grandchildren.”
The family’s income, made up of Keith’s pension and Geordie’s universal credit, can’t cover spiralling costs.
They’re not alone. Sense estimate that the cost of living crisis has put more than half (53%) of disabled people into debt, and two thirds (66%) say they are constantly worried about bills.
In last month’s Autumn Statement, the government promised to tackle these fears, pledging to uprate welfare benefits by 6.7% from April next year.
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But Sense warn it’s “not enough”. The charity are calling for emergency targeted financial support now to help the most at-risk households.
“What we really need is a social tariff, and lots of people like Martin Lewis have been campaigning for this for years but absolutely no progress has been made,” urges Keith.
“We are prisoners to our bills. We can’t live, Geordie can’t live. And there are families in much worse positions, under interminable pressure. We can’t wait another winter.”