“It’s not a spare room,” she yelled. “It’s a lifeline.”

Yesterday’s announcement that the High Court has backed the government’s bedroom tax stance against disabled people is a huge blow to thousands upon thousands of low-income families who have disabled family members – a great many living in Brighton and Hove.

For such people, separate bedrooms is often not a luxury – it is an absolute, daily necessity. In an outrageous and, frankly, immoral example of political spin, the government calls these bedrooms ‘spare rooms’ but to the householders concerned, they’re as essential as a bathroom or kitchen space.

In April this year, I visited one such couple in Portslade, Brighton, writing a front page article for the local newspaper Greenleaf. Here’s a longer account of that visit – and an insight into why Pete and Clare Marshall cannot move, cannot downsize and cannot afford the increased rent imposed on them by David Cameron and George Osborne, who both grew up in environments where ‘spare rooms’ are in abundance.

The spare room


The bedroom now being charged for – the ‘spare’ room no longer being ‘subsidised’ – is small: it barely affords space for a single bed and side table, and is crammed with the adjustable, utilitarian hospital bed Pete needs in order to sleep.

Not that sleep ever lasts long. After thirty years working as a carpet fitter, Pete Marshall was diagnosed three years ago with COPD, chronic obstructive pulmonary disease, a severe narrowing of the airways that has left Pete so breathless he’s unable to walk around his flat without several minutes of recovery.

He is dependant on both a defibrillator and an oxygen mask to stay alive each night.

I can’t sleep with him

“I can’t sleep with him. I’m sorry but there it is,” says Clare, his long-supportive partner and former NHS nurse who herself suffers from debilitating health problems. To explain her harsh comment, she switches on the defibrillator; immediately the cramped room reverberates to something resembling a road drill generator, accompanied by a scent that can only be called ‘eau de hospital’.

Darth Vader
Darth Vader
She switches it off again, so as to be heard. “I’m amazed the neighbours don’t complain.” The overhead thumping of children’s feet illustrates the thinness of the ‘social housing’ ceiling. “He uses it several nights a week. And to sleep, he has to wear the Darth Vader mask.”

Pete demonstrates his oxygen mask. It isn’t just the rubbery, face-obscuring look that justifies the nickname. George Lucas must also have been inspired by such a sizzle of air and amplified, laboured breathing to create the Darth Vader sound effects, all too noisy for any partner sharing a room to sleep through.

It can be quite violent

The machinery isn’t the only reason why separate bedrooms are essential for Pete and Clare. Pete also suffers from sleep apnoea, a frightening, life-threatening condition that means he can stop breathing entirely when asleep. Less than a year ago, it was so bad he was rushed into hospital, not for the first time, to be resuscitated.

“I don’t sleep more than an hour and a half before I go too deep and stop breathing and then wake up. The longest I’ve gone is 3 hours. If the breathing slows too much, I get panic attacks,” says Pete.

“If Pete panics,” adds Clare, “he’s terrified and he thrashes about. He’s only trying to get the mask off but it can be quite violent and he can accidentally hit me.”

Pete again: “I feel like I’m suffocating. Then I need the defibrillator. But in the panic my bladder goes and I also need the loo. I have to choose between the two.”

This is my room

Clare leads the way into her bedroom next door. It comfortably holds her bed but isn’t roomy. The idea of adding Pete’s hospital bed and equipment conjures a vision more of an overcrowded cell than of a personal space.

“This is my room,” she says with great firmness. “I need my sleep. If you’re a carer, you need your sleep.” Clare is Pete’s official carer, which can sometimes be a physically demanding job. Clare’s own state of health also demands rest.

Pete chips in: “I can get up 5 or 6 times in a night. I just wake her up all the time.”

There is no other space in the flat for Pete. Apart from the bathroom and entrance hallway, the only remaining room is a single kitchen/diner.

They try to cope with the frequent night attacks. Pete’s care plan includes living at home, partly because he’s already on what Clare calls “max medication” and there’s little more a hospital can do. But sometimes things get too much and they need nursing visits and even have to call in paramedics.

“We had to have nurses out last week. You know, it’s quite frequent. It’s something Pete knows he’s got to live with. But if we were in a single room, with nurses in and out all the time, especially at night, where’s my privacy? Where do I go?

“It’s very depressing. This is our life. This is what we have to look forward to. Pete becomes very depressed. And then we get this.”

£60 a month for bedroom tax with no new income

They now have to find the cost of Pete’s bedroom … somehow magically producing a new £60 a month for bedroom tax with no new income.
She means the so-called ‘spare room subsidy’. The bedroom tax. Pete and Clare are on benefits because neither is well enough to work. And they now have to find the cost of Pete’s bedroom out of those benefits, somehow magically producing a new £60 a month for bedroom tax with no new income. Other costs are also shooting up, particularly fuel prices. Despite Pete’s medical need to keep the place cooler than most of us would want, their gas and electricity is now almost a quarter of their ESA (employment and support allowance) and will keep on rising. And with Pete unable even to walk round the block, a car is indispensable.

“We have to budget very tightly,” says Pete. “We time our shopping for reductions, look for all special offers. We don’t go to one shop: we do Tesco, Sainsbury and Iceland to get the end-of-day bargains and ‘reduced’ counters. We can’t afford what I say is proper food. Don’t have fresh meat really.”

Incapacity and a very high dosage of steroids create significant weight problems for Pete. “My hospital dietician told me I should be eating wholemeal or granary bread. Yeah, right. Granary’s £1.70. I can get three loaves of cheap bread for that. They talk about five bits of fruit a day. We’re lucky to have five bits a week. You can’t get what you want, you have to get what you can afford.”

“At the till we’ve had to put things back, to leave enough money for the gas,” adds Clare. “And we can’t pay the water at the moment.”

“They talk about five bits of fruit a day. We’re lucky to have five bits a week.”
Not knowing how else to have their situation ‘officially’ recognised, Clare contacted Caroline Lucas. Not her own MP, Mike Weatherley?

“Oh, Weatherly …” She leaves a pregnant pause. Gives a look. Conservative Mike Weatherley MP supports the bedroom tax. By contrast, Caroline Lucas and the Green Party are campaigning to have it overturned and the Green council has pioneered a ‘no evictions’ policy for council tenants who get into rent arrears wholly because of bedroom tax.

Discretionary fund

Because Pete and Clare live in Brighton and Hove, some more immediate help is also at hand. Under the Greens, Brighton & Hove City Council is subsidising Clare’s and Pete’s council tax, another new expenditure brought in this April by the government. And the Green council has put aside a discretionary fund to help people like Clare and Pete with bedroom tax. Clare clutches the completed application form she’s about to submit and will have to keep re-submitting every six months.

But this help isn’t guaranteed, it isn’t universal across the UK and government cuts are set to get much worse. There is also the ignominy, pomposity and sheer ridiculousness of a well-to-do politician in Westminster deciding that somehow Pete and Clare can cut their living space by a third, declaring that this essential room is somehow ‘spare’ and surplus to requirements. This is the stuff of Victorian England and Dickensian satire.

The final irony

But the final irony rests with the coalition government’s supposed aims of saving tax payers’ money and freeing up social housing. If Clare and Pete were to give in to the single-bedroom life demanded by Downing Street and accept re-housing, they would actually find it impossible. Demand for one-bed flats far outstrips supply and there would almost certainly be none available from the council or housing associations. So they would be forced to look to the private sector.

“So, for all this misery, the government isn’t even saving money. It’s making a loss.”

“Our two bed flat costs £106 a week – just under £460 a month,” says Clare. “If we move into a single bed private flat, it’s £750 a month. And landlords will see a profit and keep putting that up. Maybe £850 a month next year? Paid out of benefits? So, for all this misery, the government isn’t even saving money. It’s making a loss.”

She looks into Pete’s bedroom. “On the telly the other day, Cameron kept calling it a spare room. I kept shouting at the telly, it’s NOT a spare room. It’s a lifeline.”

The High Court has ruled that the government’s position is not unlawful but this does not mean it is right, merely that it does not break the law. The High Court has asked the government to look again at the position of disabled children sharing rooms. But why sharing for disabled adults is acceptable when sharing for disabled children is not is unanswered.

Pete’s and Clare’s names have been changed to protect their privacy.

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