I frequently think of my life as a never-ending race, in which I am up against the man I should be for the prize of the life I desire. I hold the sharper mind, but carry a permanent injury, so I mostly remain two steps behind. Occasionally I may draw level, thanks to a combination of sheer bloody mindedness and support from others, without which I would undoubtedly fall even further behind. Alone, it would be no contest.
And yet, the fact that I have cerebral palsy has never truly scared me before now. Sure, there have been many battles of angst-ridden internal frustration, but these have always been personal, my own. At no point previously have these battles, due to my disability, endangered my life choices or sense of identity. I have my parents’ support, both financial and otherwise, to thank for this. It has allowed me to dream big and achieve beyond what others narrowly imagined.
As I look to move out of home permanently, age 25, with journalism finally beginning to pay its way, the reality of fully relying upon Britain’s 2015 model of social welfare is nauseating. This government has pledged to cut £12bn from the welfare budget, and leaked Whitehall documents suggest that a portion of these will fall upon disability benefits.
Like many other disabled people, I live in a twilight zone, with a mind and personality at sharp odds with the restrictions of my body. Most people, friends included, do not know how my disability affects my daily life. I do all I can to hide it. But, bluntly, I need help just to live. I cannot dress or transfer to the toilet without help. I cannot cook. This is just the surface.
Now, at a time when I should be taking risks to make the most of life, thanks to government cuts, I face the prospect of becoming what Stephen Hawking so perfectly described as a “burden”. This is something every person needing assistance dreads, be they elderly, disabled, depressed or in the grip of addiction.
I presently rely on year-long live-in care placements from Volunteering Matters, a charity providing volunteering opportunities for foreign and domestic students who average between 18 and 22 years old. This arrangement suited me perfectly during days of drunken student hedonism and essay filled all-nighters, but eight years on, I crave long-term stability. I would like to have someone within my age range who understands where I am in life to help empower me. But instead, I will either need to rely on a series of agency carers, costing hundreds of pounds, or council care.
The concept of the professional council care worker is now a myth. Many councils, including my own, outsource care responsibilities to private companies who draw from a limited pool of applicants with no standardised training. This leads to a make-do rather than best practice attitude, with hours squeezed due to financial constraints.
To give you an example, as a young man, I asked the council for a male carer to provide two hours’ additional assistance in the morning to allow my mother some respite care. You see, our live-in volunteer is only allowed to work 35 hours a week. Crucially, this includes hours “on call” as much as hands-on work, and therefore falls far short of the actual hours in a week. This leaves mum and dad, age 63 and 68 respectively, to fill in the gaps. Both have been denied carers allowance because they are in receipt of the old age pension. Admittedly, we do not live close to the breadline as they were both successful in their lines of work, but they are literally being made to pay for having a disabled son.
After waiting for four months, during which no male carers were found, I reluctantly agreed to a female carer in a bid to speed up the process and save the strain of my mother’s (very understandable) tiredness and the strain on the family. A lady was found within days. I began to prepare myself, to think of the bigger picture. And then, fortuitously yet ominously, the lady failed to turn up. Eventually a man was found.
Despite the unexpected outcome, the episode provided a bleak snapshot of my potential future – one where I have no choice but to forgo all personal dignity and my sense of self-respect in order to simply survive.
I am thankful for all help I receive. It’s just that, for all the jokes my friends make about how great it would be to have a Swedish model helping me in to the shower, this goes against all I feel comfortable with at 25. They do not have to face the reality, only adolescent fantasy. I had plenty of female “carer” relationships throughout my childhood, including every classroom assistant, every nanny. It is a different story now. Let alone the fact that a female carer would cause difficulties with future girlfriends, for instance. Imagine how silently awkward it would be, how delicately confusing and painful for all involved.
I am a full-grown man and deserve to be treated as such.
I am not alone in this desire. There is no more vivid depiction of the strain disabled people are facing than when, earlier this month, 30 disabled protesters, some in wheelchairs, tried to storm prime minister’s questions. They were fighting to save the Independent Living Fund (ILF), a longstanding £320m initiative central to helping disabled people manage care costs and live independently, which was recently signalled for closure and finally terminated last week. Its loss will affect 18,000 disabled people, the most disabled being the most affected.
The parliamentary authorities were caught off guard by this protest. They hastily locked the doors and called on the considerable police presence to deal with the escalating situation in the central lobby. “I’ve never seen anything like this,” proclaimed the BBC’s Norman Smith, as police forcibly grabbed wheelchair users. But you may have missed it in the news, as the powers pressured for coverage to be kept at a minimum.
The Department for Work and Pensions (DWP) continues to frame the closure of the ILF not as a cut, but rather a “transition” of responsibility to local authorities under the new Care Act. A spokesperson for the government told me that “more than £260m will be made available to former ILF users” in the forthcoming year, with local authorities and devolved administrations “fully funded to ensure disabled people get the targeted support they need to live independent lives”.
What the DWP fails to mention, aside from the £60m decrease, is that the money given will not be ring-fenced. Considering the £1.1bn cut in social care budget that the local authorities will face this year, there is every chance that the Care Act money will find itself allocated elsewhere and severely disabled people will be cut off
One week before the ILF’s closure, pressure group Disabled People Against Cuts (DPAC) used freedom of information requests to find that, of the 147 local authorities that responded, 88 were still unaware of how much funding they would receive. Worse still, 12 were unable to say whether any of these funds would be spent replacing the ILF support. 30 have not, as yet, even set a timetable for the completion of replacement support assessments required under the Care Act.
All this means that, when I do move out, it is highly unlikely the council will agree to the “on call” care I need. As a freelance journalist with alternating working hours and a busy social life, my life demands flexibility. Breaking news and showbiz parties do not stick to rigid care timetables or recognise my disability (a wonderful truth that I revel in.) And so, in the search for independence and attempts to fulfil ambition, both professional and personal, my parents and I must either try and fund private care at great expense, thereby limiting their precious retirement time alone together, or I must rely on friends and loved ones for support.
And this is where my fear of being a “burden” becomes very real. I tell no one at work that the reason I do not join them in the canteen on the night shift is because that is when I meet my mother to help me to the toilet. Her two hour round trip in and out of London, sometimes late at night, cannot go on.
It sickens me that it has come to this. I sometimes feel idiotic about my choice of profession. Zero hour contracts are rife, permanent roles sparse. But then I remember disabled people and those needing social care have already been hit up to 19 times harder by cuts than others. I would need more than just any paying profession, but a very well paid one indeed, to be able to live the life I’d like.
At this point, I must ask myself, how much am I prepared to lose of myself to fit the system? I have spent my life bucking it, but now I need to rely on it. However, I neither fit the convention of Cameron’s “desperately disabled”, fulfil the role of inspiration porn (as explained so wonderfully by the late Stella Young), nor am I a work-shy benefit scrounger. I am part of the vast lost middle, too unique for government statistics and cuts to compute.
A friend who I studied journalism with in London understood this nuance and we joked about it often. “You’re such an inspiration,” she would say, with quiet sarcasm. Although it often went unsaid, I sometimes felt that the fact that she is gay allowed her to appreciate my silent struggle not to be anything strikingly different, but simply, oneself. That is a human right, and one I will fight for.
The prospect of relying on friends, girlfriends or other loved ones at some point in the future makes me feel guilt, but the responsibility for this does not really rest with me and stretches far beyond party politics. It represents the loss of moralism in favour of big business and cold market forces, a sad fact that might be reversed by giving human faces to those affected.
So while I may not have the answers, I am sharing my reality here in the hope that it makes someone, with the power to help, stop and think of the lives behind the numbers.
Image: Edvard Munch’s The Scream (Creative Commons)
By Alex Taylor ( @ykts_net ), Reblogged from SomeSuch Stories ( @somesuchstories ) with thanks.
Our situation is so similar to Alex’s. My daughter is 23yrs old and has had 8 social workers in the last 4 years. Her ILF is being (generously!) paid for by our LA but they have “categorically” said they will not give her any more money. Thus “she can not live independently and leave home”. Nor “can she live anywhere else and will have to stay in Halifax”. In fact she doesn’t have any choice or control about very much due to the constant living on egg shells and trying to juggle the Direct Payments that she does have between (like Alex) a Volunteering Matters young female volunteer and paying her Personal Assistants a decent wage rather than the lousy wage that social care insist we pay.
She is hoping to go to a college to do an access to higher education course and be residential as it is to far to travel everyday. Although Education have been good to work with and have listened social care have not made any contribution let alone financial. They have only told us we need to pay the extra costs ourselves that is needed for her to live away from home. They have shown no consideration of her needs, her change in circumstances, or listened to her wishes.
long gone are the words we used to hear like “dreams, goals, aiming high, control, choice, inclusion”. Great article and thought provoking .
Great article! My son, Luke is 38,quadraplegic and registered blind, and has had his budget for care cut dramatically. Not only losing the ILF money, but has been reassessed as no longer needing complex manual handling (cutting his health budget from £1806 a month to £54), and also his social service budget too.
Luke’s solicitor has written a very detailed letter to the County Council and Health, stating all the areas of law they are in breach of. I am hoping this will go to court, so that some sort of precedent that would help all the disabled people get the funding they need.
Jasmine Davey
Hi Jasmine.
Having read Alex]s article I feel impoverished as a human being alive today in the UK in July 2015. Knowing that you as a mother are able to use the legal fraternity to fight back against the injustice of this insidious psychopathic Government is music to my heart & soul . .Pls stay in touch via DPAC on your progress in your battle to retain Luke’s human rights..
Our local cabinet member apparently has said that whilst they will maintain the ILF payment until they reassess (that’s the law as you can’t change funding until the person has been reassessed!!); that it might take up to 2 yrs as they only have 20 social workers left…. and that he expects funds may well be reduced as the ILF was more generous!! Lovely way to leave people. So far even asking to maintain it this year while they bed in the new Care Act hasn’t got any response. The councillor reputed to be taking over as “disability champion” responded to a carer asking for some support saying he’s ‘the disability champion for all disabled people not just one’!! We all know some authorities – particularly those with the highest deprivation have had huge cuts and far worse than too many southern (amazingly Tory) authorities, but their job is to support their citizens – public service? The ILF was flexible enough to help people with more flexible needs meet them in many different ways and was also very cost effective with very low admin costs. To have maintained people on ILF would have cost very little and my guess would have saved far more costs.
So this government will give millions in reduced inheritance tax but not care about disrupting people’s lives, potentially preventing their contributions to our society and community and don’t seem to understand the knock-on costs on individuals and actually the public purse of making life too hard. There seems little joined up thinking and this government’s strategy seems to me to be to pass on to others the debts they need to service whilst looking after the rich and powerful. Anyone noticed the small amount they are planning to save on tax avoidance compared to benefits’ reductions alone, when we know that the size of the tax avoidance is exponentially larger than any benefits fraud?
How cutting ESA work group’s benefits is going to help motivate people into work is beyond me – they’ve not even looked at their programme’s track record. Access to Work has been the most successful with individually tailored approaches which work, but they keep trimming this and are capping the amount… whilst the job centres are abysmal at helping anyone let alone people with a whole range of disabilities. To be fair they can’t be expert on all but their ‘one size fits all’ approach which will sanction you if you don’t do as they say, however inappropriate it is to your needs, is a waste of people’s time. People want to be in work – not spending time going to identical CV writing workshops (which many don’t need and where the product helps no employer distinguish the people as they all look the same) or ticking off applying for a fixed number of jobs however inappropriate they are…. Where’s the accountability for the job centres to train their staff and discriminate people’s needs instead of being driven by some tick-box measure of inappropriate wasteful activities that divert people from spending time doing activity that will get them the right work for them?
Alex Taylor and others will need to know the Care Act and ensure their needs are correctly assessed so that they continue to get what they need to continue AND also ensure they get their disability-related expenditure accounted for so that they don’t end up losing their money needed in paying LAs enhanced financial payments… There have been webinars – and Belinda Schwehr – Care and Health Law’s are brilliantly helpful and reasonable https://www.careandhealthlaw.com/Public/Training.aspx and she’s started a blog which purports to be interested in people’s stories? https://www.schwehroncare.co.uk/
Just DON’T allow your needs not to be met – but get help to get your rights if you need to.