Disabled People On Benefits Earned Their Keep In Covid-19 Crisis. We were already in crisis; We already knew how to help.
We’re going to talk about money. This is your warning. You’re going to get squeamish and uncomfortable as most people are want to do. Alex Holder revealed in her book, Open Up: Why Talking About Money Will Change Your Life, that when the subject of personal income and how it is used comes to the table of discussion, people fall into 3 categories; The rich, fat and silent, the middle class, dissatisfied but polite, or the poor, starving and heavily invested. But all indicated a level of discomfort above the norm.
Though The Guardian in 2020 revealed that Britain’s support for welfare benefits is at it’s highest level for the last 20 years (the most dramatic decline in negative attitudes being in 2015) data still suggests that an even split between the people who see those on benefits as deserving, and those that have a bitter taste in their mouth knowing where their tax money goes.
Turn2Us (a national charity that helps people in financial hardship to gain access to welfare benefits, charitable grants and support services indicates) that there are 3 areas in which stigma affects those on the benefits system and how they are treated by society; Personal which is restrictive to the individual, Social, that is the common perception. And Institutional which relates to the widespread perspective on those who claim benefits.
I am, what used to be known as, a doley; a welfare scrounger, a benefit freeloader. I live off the working mans tax. But then again, in this pandemic, who hasn’t resorted to the proverbial soup kitchen that is the governments welfare system. However, myself and 2.7 Million other claimants can set ourself aside from the pack by being DISABLED. That’s another word that makes people uncomfortable; never come round to my place for dinner.
My own personal vox-pop revealed similar balanced results as those revealed in National Data Statistics in British Attitudes towards those on benefits. And with people now returning from the government sponsored furlough scheme, or seeking employment thanks to the end of lockdown, focus begins to return to whom is more deserving of what, and what do people spend their money on. There seemed to be an interesting contrast between what people -think- Personal Independence Payment and Universal Credit is spent on, and the reality.
But Alex Holder indicates that challenging this could come in the form of more fulfiling and nourishing discussions on how we spend our cash.
Only good things have come from us facing what was once deemed a shameful subject.
Have a seat; I’m about to serve up smorgasbord to season that palate a little better.
Surveys completed on public attitudes in Britain between 2014 and 2019 indicated that most felt that those on any benefits were over-paid, the majority were not aware of how much an applicant was paid, and on finding out the amount, softened their opinion. That being said, from a social perspective, most claimants are branded as “untrustworthy”, “fraudulent”, or over supported to the point of “idleness”.
The DWP, however, estimates that only 2% of claims have proved fraudulent. And the majority of benefit appeals for Personal Independent Payments result in an overturn of decision in favour of the claimant.
Proportionately, overall attitudes towards those who claim any form of benefit are negative with approximately 30% insisting the claimant should be “ashamed” to some degree. This does not denote an active prejudice against those with disability on a wider scale. In fact it is the Office for National Statistics that theorizes that, really, Disabled people lack visibility.
Sob story time: Coronavirus has had a far bigger impact on the disabled population than it has the non-disabled population; restrictions to medical care for existing conditions, limited access to services, social isolation and the knock on negative impact on mental-health and wellbeing.
And there is an unspoken taboo hidden behind the mumbling politeness and side-ways glances at disabled people; how do they work, what do they do, what is the point in them living off my dime, how do they spend my money, do they really need that…and particularly when we’re all struggling?
For the sake of transparency I will put myself forward as the mental-health with pending mobility poster-child. I receive the majority of my support from Universal Credit based on a Limited Ability to Work within what the DWP defines as “normal working conditions”. In addition to this I receive the higher quantity of daily living support and, currently, no physical mobility element. What do I do? You’re looking at it. I write. I cannot sit idle, it’s not in my nature. I’m a mental health advocate, volunteer councillor and writer. In March I wrote an article, unpaid, that helped an incredible self-portrait artist sell out her Etsy store and earn her first living wage from her creativity. That is how I earned my mobility aid.
Jess Cummins (thechroniciconic)lives in London receiving Universal Credit and both elements of Personal Independence Payment.
A whirlwind of colour and attitude, she spends her time creating content that inspires other Disabled people to challenge ableism in the everyday. A designer, artist and activist, her benefits are spent on food, bills and disability related items, aids around the house, incontinence pads, taxis and accessible transport to appointments and for necessities. She is a live-action advert for her advocacy, pink haired (at least this week) and vibrant. She is a striking juxtaposition to the basic NHS issues mobility aids.
The NHS does provide the basic mobility aid; sized up on the first occasion but subsequent re-fittings come at a subsidised cost. The basic mobility aid is not always suitable for the needs of the individual from important ergonomics and usage, to overall aesthetics.
Jess noticed the difference between how people viewed her with what the NHS provided versus how she was viewed taking into account her personal styles and tastes.
I want to express my personality and my aesthetic. It encourages me to use them without feeling shame. It changes the way that people perceive you. Now that I have my chair that is custom with colour and I have added things to, people are less likely to give me pity stares and are more likely to smile at me.
Ms Cummins advised me of the vouchers given by the NHS, usually about £400–500 towards a custom wheelchair. However the cost of an average wheelchair with the nessessary adjustments can cost upward of £2000 and, if your needs dramatically change, those adjustments must come out of the claimants pocket. That is the price for mobility; to adjust the chair for decorative/aesthetic purposes costs more.
There are also the additional costs for emergency inner-tubes, replacement tires, castors, hand-rails, gloves to prevent callouses, handle grip replacements, terrain wheels.
Jess can maintain short-term movement on foot with the help of a walking aid; she invested in her own custom mobility aid here. It is rare to get an NHS subsidy for a custom walking aid but most custom providers do offer a VAT free option.
Some would ask “Why, she has a chair?” I put this to my mother; she is one for sheer honesty. And her response was precisely that. We’re navigating my mental and physical disabilities together these days.
Imagine I said to you “right, mum, you can only wear this one single pair of black stilettoes from now until forever more. They don’t really fit your foot and they’re not made of the best material for you, and the heel might be too low/slim/high.
I’d be okay with that, she said. I like my stilettoes.
But what about when you want to wear flipflops? You can’t wear stilettoes when you’re sailing. And what about if a heel of those stilettoes breaks? We might not be able to give you another pair. And that pair might be different from the ones you’re used to. And if you grow out of them, you’re going to have to pay for a new pair.
Ah, says my mother lapsing into silence.
And this is because you can’t go out without shoes. They could clean the streets and make them more accessible to your naked feet but that’s not really going to happen. And then hobbies…
She had the point now so I didn’t have to go into how she would have to afford her own curling shoes or walking boots to engage in her past-times.
Layla Blackwell (unspeakablylayla) , 33 of Clydebank, Scotland is a writer and student with a strong eye for detail . She spends the majority of her benefit on similar amenities as Jess; food, general household costs and additional aids to support her with her disability. Her heating bill is profoundly higher due to her immobility and poor-circulation. Her wheelchair is her only means of physical access to the world.
Both ladies were open to talk about housing costs and adaptations. Regardless of being at opposite ends of the country both mentioned a “post-code lottery” when it came to wheelchair accessible housing availability.
Layla was declared homeless after a series of poor personal circumstances involving family letting.
I was sent straight to homeless department and fortunately there was a wheelchair adapted flat that they had been trying to find someone suitable to move in to for a while. That ended up taking 2 weeks to move in initially.
The flat was wheelchair accessible and the basics. It had a ramp to the front door and a ramp at the back door. The doors were wide enough, the rooms were big enough for the chair. Due to a lacking of social-workers her local council, needs are dealt with by a case-by-case rather than claimant-by-claimant basis.
If you fix one problem, you go back around to the bottom of the list. The kitchen was falling apart. The walls were disgusting because they smoked. So little information was given regarding what is available grant wise. And so I paid to re-decorate the place myself to a liveable standard with my benefits.
Jess, unfortunately was not so lucky. She spent some time in appalling, mouldy temporary housing where she could barely use her chair and was, therefore, bed bound for most of the years she waited for appropriate housing. Following a 5 month stay in hospital, she was discharged into permanent housing; grab rails were installed and basic amenities. That being said, there is a clause in the contract saying that no adaptions can be made for the first year. That means Jess has to wait a year to have an electronic door or a ramp installed.
I can’t use my wheelchair to get through to some of the rooms. I can’t use my chair to get into the bathroom and that is pretty scary.
Notably, all three of us have experienced a knock-on affect of Covid on the treatment of our pre-existing conditions. And, with the pandemic restricting access of the most basic of human needs to the bare essentials, all three of us can attest to the results of the absence of care services and support. And the resulting social, emotional and economic cost.
Myself I have had the additional cost of paying for my own therapy in lue of the already lengthy waiting lists, fitting my own electronic devices to help with communication and aid. I rely heavily on the care of two adults that work and study full time who also just so happen to be my closest friends. In March 2020 I saw a community support worker to help with my Mental Health and reintegrating into the community following my CPTSD diagnosis; I have not heard from her since. Waiting lists are longer, appointments for physical ailments are often impromptu. If on the telephone, you need a thesaurus beside you in order to describe a litany of physical ailments; the phrase “bumpy, red rash” or “sore joints” does not suffice. I purchased my own mobility aid and started seeking private physiotherapy while the NHS focusing on recovering services.
Jess highlighted that, thankfully, the surrounding communities banded together to support those most in need, less visible, or marginalised due to sheer circumstance.
Private charities, altruistic start-ups and tolerant individuals, including herself, have appeared in their droves to support others; a potent vaccine to a pandemic that was more insidious than the Coronavirus. Isolation has been treated by a good dose of community spirit. Statistics reveal that the number of registered charitable causes is now the highest it has been in the last 21 years with the most dramatic incline appearing across the three lockdowns with 1746 additional services established between 2020 and 2021 alone. Though the monetary amount given to charities has fallen by 10%, the social impact of charities has increased exponentially with people giving time, sharing resources and extending care instead.
It is enough to make one consider how valuable the local pound is when, instead of turning to government run initiatives, the community spirit has thrived to replace a government deficit with only 1.2% of people across the United Kingdom having faith in where their money is spent when given to public charities.
Given that the levee of lockdown is lifting, perhaps the proverbial cloche will reveal a more desirable outcome and outlook for those living on benefits. And the attitudes towards those on the perpetual dole will become more appetising. But Covid-19 has certainly served up some food for thought for us all:
This is an argument we’re all going to have at one point or another because we’re all going to get old, our body conditions, our circumstances are all going to change; But the thing is that most people are not going to realise that until they’re actually going through it and then when they’re going through it, it’s too late to make change.
No-body escapes this. It’s just the reasons that are different. You might not get there until you’re 90 but you’ll get there and you’ll discover how unfair things are.
Prior to Covid-19, The Glasgow Warriors Womens Wheelchair Basketball team rallied around Layla to raise money for a hoist and an additional wheelchair for her to access the sport, therefore the wider society. And this commeradery in the disabled community was not abandoned to the pandemic.
The Office of National Statistics revealed that, though Disabled was a “very broad term”, they recognised the following:
…at a time in which lockdown restrictions began to ease in parts of the UK, disabled adults experience was different from that of the wider population.
Their concerns about well-being and accessing healthcare were higher than among non-disabled people. We saw differences too, in behaviours. Disabled people were more likely to go out to attend medical appointments or take care of others than non-disabled people were, and less likely to be socialising and eating out.
Layla agreed that, through her experience of volunteering with Citizens Advice Bureau, there were opportunities to see this in action:
I haven’t met a single disabled person … who isn’t trying to make themselves better or make things better for other people. And I think that should be encouraged. [The DWP] could ask “what is it you want to do?”. Listening and acknowledging that you are going out to do that and saying “Here is this money to support you in doing that”.
You can find further details for Layla and Jess at their respective websites. Both interviews are exclusive and were held within strict covid guidelines.
Open Up: Why Talking About Money Will Change Your Life by Alex Holder