Social Justice

Disabled nurse 'feels guilty being alive' as her family struggles with devastating cost of living

The cost of living crisis is having a harrowing impact on the lives of disabled people across the country. Laura Smith tells her story

Laura Smith and family

Laura Smith and her two teenage boys and husband. Image: Supplied

A disabled mother and nurse has described how she has “palpitations” thinking about how her family is going to cope with the rising cost of living as winter approaches. 

“It feels like the world is against you,” Laura Smith says. “Even when you are working and doing a good job with your children and being upstanding good citizens and contributing, it never feels like enough.”

Smith, 39, is one of many disabled people across the country facing desperation in the cost of living crisis. One in two have said that they plan on visiting a warm space this winter because they cannot afford to put on the heating, according to new research from disability charity Sense. 

“We are in the middle of the worst cost of living crisis in decades, and disabled people are being hit the hardest,” says Richard Kramer, chief executive of Sense. “Energy bills are so high that people are being forced to switch off their heating to save money, or even leave their homes to find a warm space in the community – it’s a desperate situation.”

More than half of people with complex disabilities are in debt and two thirds are “constantly worrying about bills” in the cost of living crisis. Now facing winter with limited government support in comparison to last year, disabled people’s biggest concern is energy bills

Smith, who has multiple sclerosis (MS), says the thought of winter gives her palpitations and sleepless nights. “If I get too cold, I deteriorate physically. It’s a real worry for me because we have reduced the thermostat as much as we can, but it can’t go down any lower. I will be so ill that I won’t be fit for work.”

She works 22 hours each week as a nurse but is too ill to add any more hours. Her husband is a full-time social worker, but even with both their salaries they are dipping further and further into their overdraft. It will be a challenge to keep their two teenage boys, who both have autism, fed and warm this winter.

“I feel like I’m letting my family down,” Smith says. “I can’t physically work as many hours as my husband. You feel guilty as a mum for even working anyway, but then there are bills to pay so you want to work more. My condition means that I’m very limited to what I can do, unfortunately, so you just kind of just feel guilty all round.”

Laura Smith and her family playing a game together. Both boys have autism. Image: Supplied

Smith uses an electric wheelchair and a mobility scooter and she says “it is costing us a fortune”. Disability charity Scope estimates that disabled people have extra costs of £975 each month, and this can take its toll on people’s mental health. 

“Being disabled, sometimes you feel like you’re better off not around. It is so expensive to keep yourself well. It makes you feel guilty for being alive, and you should never feel like that. I would never want any of my patients to feel like that, but I’m just talking from my perspective.

“When you have disabilities or impairments, there is a cost – whether that is charging your scooter battery or the medications that you have to pay for. I just feel like a burden on society even though I work. 

“MS has completely changed my life in terms of what I can do physically and then I’ve had to adjust mentally because you get frustrated. You get annoyed with the system which you feel like is against you all the time. I genuinely don’t think people want handouts like a bandaid. You need a permanent solution that gives people hope.”

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Sense, which has supported Smith and her family, is urgently calling for the government to consider introducing a social energy tariff ahead of the autumn budget. This is a discounted energy bill targeted at those facing higher costs and could make a real difference to people’s lives in the cost of living crisis. 

“The government cannot sit back and watch for a second winter, as more disabled people are forced into debt and ill-health,” Kramer says. “We are urging the government to recognise the full impact of rising costs on disabled people and bring in a social energy tariff which would help millions struggling across the country.”

Laura Smith faces overwhelming worry about bills. Image: Supplied

Smith would like to see the government stop putting “bandaids” on the cost of living crisis. There was an energy rebate last year, which is no longer in place, and cost of living payments for the poorest households. But that money eventually runs out. 

“Handouts, as helpful as they are, actually don’t make you feel better,” she says. “They don’t make you feel good about yourself. I like to give to charity, not take it. The fact that I’ve even received support, although I’m grateful, doesn’t make you feel great. 

“I would like to see wages coming in that are sufficient. Looking at the cost of items and the cost of energy, how is it spiralling out of control like this when the wages aren’t matching inflation? It doesn’t make sense.”

Smith worries for others in worse positions, having to rely on food banks or going hungry. A recent study commissioned by the Trussell Trust found that 69% of people referred to food banks are disabled, three times the level seen in the general population.

“I’m not in the worst situation,” Smith says. “That’s the scary thing. There are people in much worse situations in lower paid jobs and they might be single parents, or maybe both parents can work. There are really bad situations for families. I’m very acutely aware of that. Life is for living and we shouldn’t just be existing.”

Get help if you are struggling. Call Samaritans for free on 116 123, email jo@samaritans.org or visit samaritans.org for useful resources and advice on coping. Mind has a confidential information and support line, Mind Infoline, available on 0300 123 3393 (lines open 9am-6pm, Monday-Friday). For information on managing money and your mental health, see Mind’s advice.

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