Hopes and Dreams

(Content warning: Mentions of domestic abuse and suicide)


During his Tory party conference speech last week, Rishi Sunak, while justifying slashing Universal Credit, asked his audience “is the answer to their hopes and dreams just to increase their benefits?”

The thing is, for many people; the answer is a simple “yes;” an increase in benefits could be an answer to their hopes and dreams.

* If a parent’s dream is for their kids to have a better life than them, and increased benefits mean they’ll be able to work only one job rather than the three they have now, giving them time to help their children with homework, which will enable their children to achieve more later in life: Yes, increased benefits can answer their hopes and dreams.

* If a terminally ill person’s dream is to go on an exciting adventure before they die: Yes, increasing their benefits can be the answer to their hopes and dreams.

* If a person with a mobility impairment dreams of a really good wheelchair that’ll change their life, but the NHS won’t prescribe what they need and they’re not popular enough to crowdfund it: Yes, increasing their benefits can answer their hopes and dreams.

* If a disabled person wants to move into a more accessible property, which will dramatically improve their health, but they can’t find one within the local housing allowance budget: Yes, increasing their benefits can answer their hopes and dreams.

* If a disabled person was saving up for something special, but they blew their savings on the extra costs of being disabled/shielding in a pandemic: Yes, increasing their benefits can answer their hopes and dreams.

PIP is supposed to cover the extra costs of being disabled, but despite the fact that so many of us saw our extra costs soar during the pandemic - from having to have everything delivered costing more than being able to go to the shops while shielding, to having to turn to more expensive things like robot vacuums and having to get takeaway every day when social care was withdrawn - we got no extra PIP payments to cover those extra costs. I calculated that my extra costs related to shielding from March 2020 to March 2021 came to £5,000. I won’t say I could “afford” that, because it’s not true; but I did have access to that amount thanks to family, while not all disabled people did. At least one disabled person starved to death during the first lockdown because he couldn’t access food while many other disabled people will have gone cold, hungry, or without connectivity due to not being able to afford phone credit because their extra costs were not met. There were no campaigns to get a one-off payment to PIP claimants to cover our pandemic extra costs, because no political party actually cares enough to fight for us; and the major disability charities aren’t any better, because they didn’t demand that PIP meet our pandemic-related extra costs either.

And if you have more than £16k in the bank, you’re not eligible for any income based benefits, you can only claim £74.70/£114.10 weekly contributions based ESA (as long as you’ve been paying your National Insurance contributions in the last couple of years), plus PIP. I’ve a good friend who got an inheritance a month before the pandemic. Not huge, but enough to buy a crap house in some of the most deprived areas of the north. But her income based benefits were cut because she did the right thing and told the DWP she’d gotten the inheritance, so during the pandemic she’s had to live off that inheritance because she was paying £107 rent a week out of £114 ESA; leaving her with £7 a week to live off, plus PIP to cover some of her extra costs of being disabled. Obviously £7 a week for all bills is not survivable, so she’s had to dip into the inheritance; and now it looks like she’ll be renting for the rest of her life between the inheritance she blew on surviving while shielding, and the soar in house prices caused by the stamp duty cut. Her only hope to buy a crap house in a deprived area in the north now is if there’s a housing crash this winter.

Most political parties at various points in time bang on and on about how the system should look after those who’ve ‘done the right thing’ and worked hard and paid their National Insurance. But they don’t at all. Having £7 a week to live on after you’ve paid your rent is not “looked after”. Those who’ve paid their NI but aren’t eligible for income based benefits because they’ve got a partner in work, or got more than £16k from an inheritance or old savings from when they were fit for work, are treated like shit. And because of that, the benefits system will pay more in the end. My friend won’t be able to buy a house now, so she’ll deplete the small inheritance, and then will soon be back on income based benefits again and the state will need to pay her rent again. If contributions based benefits were fair, she wouldn’t have blown out her inheritance while shielding, she’d be able to buy a cheap house once she’s had her third jab and finished shielding, and the state would never need to help her with rent ever again.

She - like claimants of all legacy benefits like JobSeekers Allowance, Carer’s Allowance, and all types of ESA (both contributions and income based) - didn’t even get the extra £20 a week that UC claimants got. When you’re left with £7 a week after paying rent, that extra £20 would triple the amount available to spend before having to buy food out of the money she was hoping to buy a future with. The #20MoreForAll campaign was pretty pitiful to be honest because it had no mainstream support; the main political parties barely made a peep - Labour just had the very occasional tweet from the Shadow Work & Pensions Secretary - and the charities that are supposed to represent us barely made a fuss either. I suppose at least they did more for that than they did for trying to get a one-off PIP payment to cover our pandemic extra costs; with the amount of effort there being absolute zero, they’ve never mentioned it at all.

(Friend consented to being written about anonymously)

* If a parent is worried about their children being at risk of getting involved in a gang, and dreams of moving to a new city to give their kids a fresh start, but they can’t afford a moving van, a deposit on a new private rented flat, or even to pass the financial check landlords carry out: Yes, increasing their benefits can answer their hopes and dreams.

* If a person with limited mobility simply dreams of surviving this winter without dying of hypothermia, and wishes they could afford to put the heating on: Yes, increasing their benefits can answer their hopes and dreams.

Disabled people born after 26th September 1955 aren’t eligible for the non-means tested Winter Fuel Payments and despite the fact that fuel bills are higher than ever, disabled people are having to spend more time at home than ever before because many of us are still at least semi-shielding, and most importantly; many of us can’t move around to keep warm like non-disabled people who can do star jumps to warm up: There’s no campaign to introduce WFPs for disabled people in this most expensive winter ever. Again, neither politicians, nor charities that supposedly represent us, care about us going cold this winter. The WFP ranges from £100-£300 depending on age and circumstances. I’d say that £150 for those getting the low rate mobility component of DLA/PIP (who have some limitations with their ability to move around), and £300 for those getting the high rate mobility component of DLA/PIP (who have severe limitations with their ability to move around), would be suitable rates. But no-one cares if we fucking freeze, especially not those supposed to be representing us.

* If a person who recently became disabled can no longer do their old job, and they need money to pay the course fees to retrain do something different: Yes, increasing their benefits can answer their hopes and dreams.

While you can get some qualifications funded by the JobCentre if you meet certain conditions; there will always be people who want/need to train on a course that isn’t funded, or they don’t meet the criteria for funding.

* If a homeowner is off work sick long term with Long Covid, and they dream of keeping the family home, perhaps the home where their children grew up, maybe the house where their spouse died, but they can’t afford the mortgage on ESA or Universal Credit: Yes, increasing their benefits can answer their hopes and dreams.

* If someone permanently too ill to work dreams of being a homeowner: Yes, increasing their benefits can answer their hopes and dreams.

You can claim housing benefits to pay your landlord’s mortgage, but not your own. The only help for homeowners with housing costs is Support for Mortgage Interest; and even that’s a loan nowadays. So you’d have to find the money for your mortgage, and all the other expenses in life, out of your £74.70/£114.10 weekly contributions based ESA, or £324.84-£668.47 monthly Universal Credit. (Some people are still getting income based ESA, although you haven't been able to put in a new claim for ibESA since long before SARS-CoV2 made the jump to humans, so that won't apply to anyone newly claiming benefits due to long covid.)

* If a disabled person on income based benefits dreams of living with their partner, but can’t afford it because their benefits will be stopped completely leaving them wholly dependent on their other half: Yes, increasing their benefits can answer their hopes and dreams.

* If a disabled person dreams of leaving their abusive partner, then an increase to benefits that are paid directly to them - specifically PIP or contributions-based ESA, as distinct from Universal Credit which will be paid to the head of the household - could enable them to afford transport and a temporary place to stay in order to be able to leave; answering their hopes and dreams.

Disabled people are nearly three times as likely to experience domestic abuse as non-disabled people so needing to save up money that comes to you personally in order to leave is not a hypothetical risk for thousands. It's also why many disabled people daren't move in with a partner they'd be wholly dependent on because it would put them at such high risk of financial abuse, and potentially other kinds too. You never know what the wonderful, kind, gentle person you love right now will turn into when you're completely dependent on them just to buy tampons.

* If a disabled person simply dreams of not having to count every penny, of being able to spontaneously buy a new dress, of being able to get takeaway now and then, of being able to put the heating on more than 3 hours a day: Yes, increasing their benefits can answer their dreams.

* If a new computer could make someone employable, if they’re only well enough to work from home and a new PC could completely change their life, but they just can’t afford one: Yes, increasing their benefits can answer their hopes and dreams.

I don’t know if you noticed, but in several of these examples - the person who needs a new wheelchair, the person who needs a more accessible home, the person who needs to retrain, and the person who needs a new computer - an increase in benefits would ultimately make them more employable. The government thinks slashing benefits is the answer to getting disabled people back to work; but in reality the opposite is true. If you need a wheelchair to physically get yourself to work, but you can’t afford one, the NHS won’t issue a suitable one, you’re not eligible for Motability because you got turned down for high rate mobility PIP, and you’re not popular enough to crowdfund one: You literally cannot physically go into a job interview to try and get hired.

First Labour, then Tories and Lib Dems, then Tories on their own, then Tories and the DUP, and most recently Tories on their own again, have spent the last 13 years cutting disabled people’s benefits to try to get seriously ill and severely disabled people to get off their "lazy" sick and disabled arses, and into work. Never mind the fact that DLA was not an out of work benefit and plenty of claimants needed it to stay in employment; they still created PIP to try and cut the case load by 20%, spouting utter bollocks about getting disabled people into work.

But when you cut someone’s benefits, you drive them further from the workplace. If someone has a job that can’t be done from home, but their PIP is stopped so the Motability scheme takes back their leased wheelchair: Suddenly they cannot go into work, maybe cannot even get out of bed. They’ll at the very least need to take a sabbatical from work until they get a new wheelchair, they may even lose their job entirely.

You also drive them further from the workplace because poverty damages health, and we’re talking about people who are already sick. If someone has cancer but is hoping that claiming benefits is a short term thing because they’re hoping they’ll recover quickly; until they discover how little they’ll have to live on. You cannot recover from a serious illness like cancer if you’re malnourished from poor quality food, and borderline hypothermic because you can’t move much and you can’t afford to put the heat on, while the stress of poverty can also affect physical healing. A cannabis prescription may help with many facets of cancer with THC being an antiemetic, a painkiller, and an appetite stimulant, but cannabis prescriptions are pretty much only available privately; and you definitely won’t be able to afford private healthcare on £74.70 a week ESA (the amount you’ll get if you’re expected to be able to return to work in the not too distant future). Such claimants would have the chance to recover quicker and get back to work quicker if their benefits were enough that they could eat well, keep warm in winter and cool in summer, avoid having their physical healing slowed by the psychological stress caused by poverty, and afford a bit of private healthcare; whether a physio to help them get movement back after an op, or, yes; a doctor who issues private prescriptions for medical marijuana.

The stress of poverty affects even those who were the most mentally sound previously. So if you’re claiming benefits for a mental health condition, the chances you’ll be able to get off benefits is slim. But if our benefits system lifted ill and impaired people out of poverty, it would give people a real shot at recovering from a mental illness, instead of our social security system making people sicker. Especially if people could afford to pay for mental healthcare in a timely manner rather than waiting at least months, commonly years, often for the wrong therapy on the NHS.

If you just yank the social security rug out from under the feet of people claiming benefits due to severe mental illness, obviously they’re not well enough just get a job, so they end up dying like Errol Graham and Mark Wood who both starved to death because they couldn’t afford food, or they’ll die by suicide like Philippa Day, Paul Reekie, and far too many others to list. Reekie died only a month after Iain Duncan Smith succeeded Yvette Cooper as Work & Pensions secretary, so his death was as a result of the benefit cuts instituted by the last Labour government; before the Tories had the chance to make the system even worse. It's worth noting that in Australia, during the pandemic when social security payments temporarily rose and lifted people briefly out of poverty, suicides went down.

The government created the non-means tested furlough scheme to keep people's finances sound while they weren't in work, because they know full well that plunging people into poverty drives them further away from work by damaging their mental and physical health, and leaves them unable to afford the essentials to get back into work like a computer and smart clothing. But they don't apply the same logic to sick and disabled people. Somehow we're a magic mirror image of the non-disableds, and forcing us deeper into poverty will supernaturally drive us closer to work. Even though the list of DWP-related deaths tells a different story.

Yet despite all these obvious examples of how increased benefits could not only answer our hopes and dreams (and in some cases save our lives), but also achieve the government’s goal of making us more employable; Thérèse Coffey said at the Tory conference that she wants to cut even more people’s benefits “to get us into work” when, of course, all it’ll do is make people iller - therefore further from work, less able to afford to get healthy, and less able to buy the tools they need to find work like wheelchairs and computers - and will ultimately lead to even more preventable deaths at the hands of the DWP.

The main reason for planning more cuts, of course, is just because the Tories love levelling down, despite all the "levelling up" bollocks that riddled Johnson's conference speech. At the exact same time that the Universal Credit cut went into effect, plunging families into poverty, increasing hunger and suffering across the country; Thérèse Coffey was making sure everybody knew that she was loving it; she was having the time of her life.

Overheard in the Waiting Room

This morning, I took a pair of gruesomely infected toes to the doctor's. During the long wait, I politely eavesdropped on a conversation between three friends who had bumped into each other (that is, they had met by accident; they weren't seeking medical help having violently collided). I would guess that they were around retirement age, or maybe a little younger, two women and a man; ordinary folks. They competed as to whose winter coat had lasted longest, discussed Strictly Come Dancing and expressed some nostalgia for The News of the World before it went trashy.

Then they had a conversation, which went something like this:

A: Of course, all these cuts have just come in, haven't they? A lot of people are going to be struggling.
B: Oh yes. It's not fair that the poorest people should have to pay when it's the bankers who got us into this mess.
C: I know. It's only going to cause the country trouble in the long run, making people so badly off.
A: But there are some people swinging the lead.
B: That's for sure. You hear a lot about disability fraud.
C: Yeah and everybody knows somebody, don't they? Someone who's working the system.
A: But there's a lot of propaganda about that, I think.
B: Of course, the government want you to think they're all the same.
C: You can't believe anything you hear, that's for sure - especially not from this lot!

It went round like this, several times, sometimes with specific anecdotes or particular stories they had seen on the television and in newspapers. At one point, there was a very nuanced discussion of workfare (although they didn't use that term), which talked about the difficulties someone might have if they had depression, would benefit from work and might sign up for one of these schemes, only to get in trouble when they struggled to get out of bed in the morning and were late for their placement. Because people with depression can have trouble getting out of bed in the morning, however hard working and enthusiastic they are.

But time and again the same sentiments were repeated:

1. Some people are on the scrounge for sure. 
2. Some people are really suffering.
3. You can't believe anything your hear.

This disbelief was extended across the board. At one point the conversation shifted from a discussion of just how difficult it was going to be for some people - just how little money people would be left to live on - to the "scare-mongering" about how difficult it was all going to be.

And this is the trouble we have; the position that ordinarily apolitical people who are not directly affected by the cuts have been placed in. They don't trust what they hear - least of all from politicians. They care about the fact that people are being left with little to live on, and the removal of crisis safety-nets like the Social Fund and Legal Aid for civil cases. But, weighing the balance of everything they've been told, they feel that there's a fair amount of cheating going on and that needs to be stopped.

Most people I speak to, outside of disabled, poor or otherwise politically active types, feel the same. They support Welfare Reform in principle (and why not? Few people feel there's no room for improvement), they are anxious about how this effects vulnerable people in practice (People like you). But they don't know what the answers are and they feel that everyone who has a voice in the public sphere is probably lying to them.

I don't know what the answers are, but I wonder if this conversation is about to change. Although there's more to come, a lot of the cuts which came into place on Monday have been a long time coming, and the real life consequences have been - while reasonably speculated about - as yet uncertain. Now it's happening. The poorest people are poorer than they've been for many years. There are many more of them.

And maybe there's some optimism to be taken from the fact that people are confused. A few years ago, when the scrounger rhetoric had just got underway, I think the friends' conversation would be less balanced. The deserving poor would have been spoken about as rare exceptions, as opposed to "many".

See Also: John Harris: We have to talk about why some people agree with benefit cuts.

Local Housing Allowance Cuts & The Idealised Family

This is a Daily Mail link, thus the succinct and witty title:

Cameron to axe housing benefits for feckless under 25s in war on wellfare culture

Or as I would have put it: Under-25s to be denied Local Housing Allowance. Maybe.

The Conservative Government have an idealised view of normal families being wealthy, upper middle class, living in large houses with plenty of space, where everyone gets on well, everyone works and spends time outside the house and parents are committed to providing for their offspring for as long as it takes for them to get on their feet. Getting on their feet, in the mind of David Cameron, seems to mean saving up to buy a house (a neat trick at the best of times, let alone when you're poor enough to be on benefits).

I know a lot of nice families. I don't know any families like that.

My parents are great, but they didn't see parenthood as a lifelong financial burden and expected my sister and I to be independent. I started paying rent (though admittedly not much) at sixteen and moved out at eighteen. They helped my sister through university to the best of their ability but have provided no further financial assistance to either of us since. They are generous with their time and energy, I get Christmas presents I couldn't afford to treat myself to, but as far as they are concerned, they've done their bit.

By the time I was eighteen, I couldn't stand living with them any more. They were not abusive. They weren't terrible about my illness, but they weren't coping with it at all well, at a time when I wasn't coping with it at all. They struggled to see me suffer and half the time they treated me like an infant, while half the time they kept their distance and made it difficult to ask for help. They were, at that time, fantastically homophobic*. Both of them were also under a fair amount of personal stress; Mum's father had died the previous year, Dad was unemployed and I was frequently caught up in the middle of their arguments. And this was making me ill. It wasn't the only thing making me ill, but it was a big contributing factor to the suicidal depression that took hold.

As it was, I met a thirty-four year old man who took advantage of my considerable vulnerability - including my housing situation - and whisked me off to the other end of the country. This seemed like a really good thing at the time; I had a rock bottom self-esteem and was used to being treated like a child, so I wasn't able to identify verbal abuse, controlling behaviour or even the violence for what it was. What's more, being sent home to my parents in humiliation was used as a constant threat and since I couldn't live by myself, I felt this was my only other option. It was only much later, when I realised that I had friends and several family members who would be prepared to provide refuge should I need it, that I was finally able to leave.

I needed to move out when I was in my late teens. A change in legislation wouldn't have stopped my story happening, but it would remove a vital option from other young disabled women (and women who are poor for other reasons). Young and vulnerable women without any option of independent housing are going to be even more vulnerable to older abusers who don't have to work too hard to seem a more attractive option than staying with Mum & Dad.

The difficulties of living with parents are exaggerated for disabled people - folks who find it easy to live with their parents are usually extremely independent, able to go out whenever they like and only pop home to sleep off the hangover. When you're at home most of the time, need meals cooking, let alone help with bathing and so forth, there's far more pressure on that relationship. Some parents of disabled people are so used to being anxious about and protective of their kids that they take a long time to realise that their children have grown up. If indeed, they ever do.

That was my situation, but there are myriad other reasons that young people cannot live with their parents, apart from obvious things like having no parents or having terrible parents (who are by no means restricted to parents who beat you up - one exceptional circumstance the article acknowledged). These include

• Parents live in a house too small to accommodate you, e.g. they've got a smaller house now, Gran's moved into your old bedroom or you'd have to share a room with two five-year-olds and a budgie named Elvis.
• Parents' house is physically inaccessible. 
• Parents' house is an unhealthy environment for you - I had one young friend with ME who wound up in a hostel because the noise and chaos of her multiple younger siblings made it impossible for her to get sufficient rest.
• Parents make it difficult to be yourself in some way (e.g. they disapprove of your sexuality, religion or lack thereof).
• Parents live in a completely different part of the country to where the young person lives and works. Not only it is perfectly reasonable that young adults move to other parts of the country, for studying, work or because somewhere is more suited to them, but it is even more reasonable that young people shouldn't have to move back - or indeed follow their parents around the country - if something goes wrong. You might have begun to establish a career in London, only to be unemployed at the age of twenty-four, and rather than staying in London while you find a new job, you have to return to Orkney where it is impossible to apply for London jobs.

When I was twenty-nine, I was forced to move back in with my parents. This situation changed soon after and I now live less than half my time with my own folks and the rest of the time with my boyfriend's parents - who are, in fairness, somewhat closer to Cameron's ideal, only without having any money to spare. 

However, my parents struggled with this. They wanted to help, because I'd found myself in very insecure accommodation where I didn't have access to freezer space or a functional washing machine, let alone the help I needed. But they didn't understand why I couldn't get social housing with a snap of my fingers and move out again right away. They couldn't understand that Local Housing Allowance wouldn't pay full rent on any suitable place I might want to live - in fact, it wouldn't pay for any place I could reasonably live, such that I could afford to eat as well, in this not at all posh part of rural Suffolk.

My parents house is inaccessible, and while folk in other areas of the country can't get the basics, I've had to turn down all kinds of adaptations from social services because this is not my house and my folks don't want the place looking like a nursing home. They would never consider getting a vehicle that could transport my power chair, so I can't get out much while I'm with them and have to ask my boyfriend's Dad to help me on most significant journeys. And apart from all that, it's been a struggle. Not an insurmountable one, but a struggle, nevertheless.

This is a normal family. Some people reading this might judge my parents badly, but others will know how lucky I am that I've got a comfy room and a roof here and get on with them well enough that this is okay for now - especially as I don't have to be here all the time. But there is nothing remarkable about my situation or the attitudes of my folks. They love me and they have done their best for me. Even if they were to be judged badly for that, it's not something I - let alone my desperate eighteen year old self - have ever had any control over.  

* They weren't as bad as all that, really, but I love my parents, and when I think about things they said then, when I was having come to terms with my sexuality in secret, I find it very shocking and hurtful. However, I know they could have been worse, and if they'd found out about my sexuality then, they probably would have dismissed it as an abhorrent phase  as opposed to throwing me out or anything nearly so dramatic.

Guest post: When "the vulnerable" have everything to fear

This is a guest post from @Spoonydoc and originally appeared here.

Many disabled people are currently living in fear since the welfare reform bill became law. Some benefits are due to be replaced with stringent new criteria which mean that many disabled people will no longer qualify for support. With social services cutbacks many will be left with no help whatsoever.

I am not quite in that position. I am among what the government likes to call "the most vulnerable". Currently in receipt of the highest levels of disability benefits and having easily passed the new dreaded draconian Work Capability Assessment I am in the support group of what is called ESA and am not expected to be able to work again. Having seen the criteria for the new benefits it is clear that even being as harsh as possible, I should easily qualify for the highest rates of these too.

With the government having promised that the reforms will see more support diverted to the "most vulnerable in our society", you would therefore think I have nothing to fear.

You couldn't be more wrong.

I currently live independently.
As I live alone I receive an extra payment called SDP (severe disability payment) which helps cover the extra costs of care and disability.
However a large portion of this and my other benefits goes to social services and in return I receive direct payments, money with which I employ carers to help me with every day tasks such as getting dressed, washed, eating, shopping, etc.
My LHA (Local Housing Allowance) is upgraded to a 2 bedroom rate so that carers or family can stay when my illness is so bad that someone needs to stay overnight.
My flat was adapted 8 years ago so that it is wheelchair friendly.

When the changes start coming in next year, all this will go.

a) SDP is being abolished completely.
b) The 2 bedroom allowance is no longer guaranteed.
c) I will continue to have to pay most of my benefits towards my care. I cannot manage without it.

I calculate that I will be around £80 per week worse off (around half from SDP and half from LHA).
At first I might be ok. Apparently there will be a transitional protection as far as SDP goes, which means I will only be £40 worse off and might be able to get that together somehow. As time goes on however, that will be eroded by inflation and benefit freezes.

The second big issue is : I cannot manage without a second bedroom.
Even if I could, there are no wheelchair friendly 1 bedroom flats available for rent privately (I've been looking). As far as social housing goes there is little wheelchair accessible housing available and in any case I am not allowed a bungalow until I am 50, ie in 17 years time!

So I either have to go into non wheelchair accessible accommodation without provision for my carer or go bankrupt!

The only other solution is for me to go into a care home at the ripe old age of 35. Ironically this will cost far more than if I were to stay put and continued to be paid benefits.

Before the election David Cameron said "If you are sick, disabled, frail, vulnerable, or the poorest in society you have nothing to fear."

Sir, please look me in the eye and say that now.