The Threat of Getting Better

This piece was written for YouTube, and the full transcript is below.

This piece contains discussions on disablism, suicide and self harm.

This is a story about disability benefits in the UK. I got a brown envelope through my door a while ago, telling me that although I have a full year of disability benefits left before my award is up, I have to submit a reassessment form in two weeks otherwise I lose my benefits. This is something that tens of thousands of disabled people go through each month across the country, so this is a topic that’s close to home.

Disability benefits in the UK have changed a lot in the past ten years. I’m only going to be talking about a specific type of benefit today, and the impact it has on a certain group of disabled people. I encourage you to listen to more disabled voices about this; disabled writers, academics and creators have been talking about these issues since before they were introduced.

Personal Independence Payment is the disability benefit I get. It can be awarded regardless of what you earn, and in theory isn’t connected with whether you work or not. It’s intended to help with the additional cost of living that comes with being being disabled, which for the average disabled person in the UK is £6,840 a year[1]. Notably, it usually doesn’t meet these costs. PIP was introduced over the past several years ostensibly to make disability benefits more fit-for-purpose, and to direct more support to the people who “really needed it”. Before PIP was introduced, people could be awarded Disability Living Allowance for life if they had a disability or health condition that was unlikely to change in future. Awards relied heavily on what your own doctor said. which had upsides and downsides, but it meant that opinions from healthcare professionals who knew you best were weighted heavily, which was often advantageous.

With PIP, lifetime awards have disappeared, so even disabled people with static disabilities, like amputees and some people with spinal cord injuries, have to go for regular reassessments, potentially every few years. This is for the reasonable purpose of ensuring that they have not regrown a leg, which may negate their need for the benefit.

Gone too has the reliance on your own doctor for medical opinions. In-person assessments are now carried out by “healthcare professionals” – “HCPs” –  who may or may not have experience with or even basic knowledge about your disability, and their reports are based strictly on a set of criteria that assess how well you can “function” in your day-to-day life.

To summarise, instead of being awarded PIP because you have a diagnosed health condition or you’re understood to have a certain disability, you are awarded PIP because you specifically need help doing things like eating or drinking, getting dressed, using the bathroom, or walking.

PIP is split into two components: the “daily living” component, which is awarded mostly according to the level of support you need for day-to-day activities at home; and the “mobility” component, which is awarded mostly according to how easily you can plan and undertake journeys, walk or otherwise travel. I, for example, get the higher level of the mobility component, but nothing from the daily living component, despite having significant difficulties with both.

But interestingly, this decade has seen an incredible level of privatisation within the disability benefits system, and today, a few people are making an absolute killing out of it.

Profit

In-person assessments for PIP are carried out not by the national health service, or the government departments responsible for benefits, but by massive private companies who are contracted to do so. In Northern Ireland, that contract went to Capita, a multinational outsourcing and financial organisation. Other companies hold contracts across the rest of the UK. Between 2013 and 2016, more than £500,000,000[2] of public money was paid to these contracted businesses to provide assessments for disabled people accessing benefits.

Now, you may argue that outsourcing to a private company isn’t inherently a problem, if they’re assessing people fairly and writing fair reports. The problem is, though, that of 670,000 people who were denied PIP who then challenged the decision, 18%[3] won at the initial challenge stage, called a Mandatory Reconsideration. For those denied at this stage who continued to formal appeal through tribunal, 63% of people won their appeals. That’s 227,000 people who secured their benefits after initially being denied. That’s ludicrous. That’s the population of a sizeable city.

This would suggest that Capita’s assessments, and those done by the other contractors, are perhaps not up to scratch. To add insult to injury, the guidelines for PIP reports are so vague that even a report deemed “acceptable” can be “riddled with errors and omissions”, according to the UK Parliament’s own Work and Pensions Select Committee. I saw that in my own PIP report, where there were many things left out and several complete falsehoods. Heck, I even switched gender three times in less than a thousand words.

On top of that, all three contractors have come under questioning by the Select Committee as to why they all incentivise their assessment staff with financial bonuses for each day they process a certain number of extra assessments. This has led to disabled people receiving reports that are rushed, inaccurate, and completely inappropriate. Reports generated with copy-pasted text are common, and these reports often go on to form the basis of a benefits denial.

For example, Work and Pensions Select Committee Chairperson Frank Field MP said: “All three contractors insist that offering their assessors extra cash to complete more assessments each day has in no way compromised the service that claimants receive. But we have received thousands of accounts of shoddy, error-ridden reports that have slipped through the net. A claimant whose PIP report stated she walked her dog daily—despite not being able to walk nor owning a dog – is a case in point”.[4]

In 2017, England-based support organisation Here2Support said that two thirds of PIP appeals that their clients had won PIP involved lying assessors[5], and larger investigations by Disability News Service[6] found experiences of lying healthcare professionals were endemic. That’s a lot of lying assessors. I think we may be dealing with… a sort of… systemic… problem? Perhaps.

Humiliation

The PIP assessment goes deep into your struggles and difficulties as a disabled person. Although I’d helped friends fill out the form plenty of times before, when it became my turn I was suddenly taken aback by how many difficulties I had. We’re forced to reveal very intimate and personal details about ourselves – about how we eat, what we do in our own homes, how we use the bathroom, and often about the pain and suffering that we have to deal with – and all this to someone we may never meet or even speak to, who makes judgments about us without ever hearing our stories beyond whether we can pick up cutlery or not, and all for benefits which often don’t meet even the basic costs of being disabled.

And when I mean meet the basic costs, I mean the basic costs. 1 in 5 disabled adults are unable to keep their homes warm, and over a quarter have less than £50 to live on each week after housing costs and tax[7].

The United Kingdom signed the United Nations Convention on the Rights of Persons with Disabilities in 2007, and ratified it in 2009. The Convention for many represented a sea change in the philosophy of disability rights at UN level, but unfortunately, during and after the ratification process, the human and civil rights of disabled people in the UK were being dismantled.

The disability benefits system in this country has become steadily crueller and more unforgiving, meaning disabled people’s experiences of declining health and poverty are often the direct result[8] of delay or denial of disability benefits payments.

The United Nations Committee on the Rights of Persons with Disabilities reviewed the UK in 2016, describing government benefits cuts as having created a “human catastrophe[9]” for disabled people in the country. The Committee had previously said that the benefits cuts had caused “grave and systematic violations” of disabled people’s rights. The Government fought this in court but ultimately lost. The Committee have made dozens of recommendations[10] to the UK Government on the treatment of disabled people, none of which have been fulfilled as of today.

The UK Government often waxes lyrical about how much it’s spending on benefits for disabled people.

What the UK Government says about disabled people and what it does are two very different things though. While praising themselves about how many disabled people have entered work and how the people who need it most get more support today, Government ministers have repeatedly been accused of using disability statistics in misleading ways, and Sarah Newton MP, the Tory minister for disabled people at the time, refused to apologise for misleading Parliament about a report on extreme poverty last year[11].

My own benefits

I’ve been using mobility aids now for a few years, and now have a good set of bright orange crutches and a bright orange wheelchair to get me through the world. I’ve been claiming Personal Independence Payment for nearly 2 ½ years now. The first assessment I went through in 2017 was horrendously difficult, exhausting and drawn-out, and was especially scary as I was on a very low income at the time. Although my assessor was nice to my face, she lied throughout her report. From making things up completely, to facts being misrepresented or twisted, to obvious lorem ipsum boilerplate throughout, her report was ultimately used to grant me zero points for both components of PIP.

There’s some absolutely stunning phrases in the report – I’ll give you the highlights. I’ve uploaded my full report to Twitter[12] if you fancy having a longer laugh yourself.

“You were observed to walk approximately one metre unaided with a normal gait and at a normal pace” – 1 metre is about two paces, for those playing along at home. The report continues: “I have decided you can stand and then move more than 200 metres safely and reliably and for most of the time.”

This assessor, within 30 minutes, has concluded the opposite of what every healthcare provider I’ve talked to in the last 3 years has said, which I think is referred to as innovation. Another one:

“You were able to go from standing to sitting in one fluid movement”

That, my friends, is a very verbose way to say “fell into a chair”. Nice.

Due to the report and the decisions taken by the government department, I was ultimately denied any PIP whatsoever.

I eventually fought that through the initial challenge process, and got what I now receive, the Enhanced mobility award. However, like many disabled people, my health is changeable, as is my mobility, and perceptions of disability in society, and perceptions of who deserves and who does not deserve help impact on disabled people, and our disability benefits assessments too.

That was 2 years ago. And now, well now it’s time for that all over again.

Accessibility Weaponised

This is my car. It’s a 2018 Hyundai Ioniq, and it’s leased through the Motability Scheme, which is probably the one part of disability benefits in the UK that I really like – you swap part or all of your mobility component of PIP for a lease of a car, that covers everything but fuel. Tax, insurance, repairs, roadside recovery, it’s all covered. I wish it applied to more things, like electric bicycles, but it’s a great scheme and has changed my life for the better.

I got this car in February 2018, so I’ve had it for about 20 months now. I’ve put 28,000 miles on the clock so far, and it has opened up so much of the world to me. As someone who’s politically against the mass use of cars within cities, it’s an uncomfortable reality that it’s the most accessible way for me to get around over longer distances, but I’m working on that.

It’s got strong heated seats which are a must for my spinal pain, it’s got self-driving technology which means I can be a bit safer when driving, and it can carry my wheelchair and crutches while also bringing other passengers.

I got this car because of how my disability affects me.

Now, this is the bit where any of you who work for the UK Government’s benefits departments should skip. Go take a walk, steal from a food bank, kick a poor person, whatever strikes your fancy.

So, here’s the thing. If you do less waiting in the cold at bus stops, you may find your pain is better at the end of the day. If you do less walking with crutches from the bus stop, you may find your fatigue is better too.

If you have a car at your disposal, a tool provided literally to benefit your mobility, you may find your mobility improves. So, how does that affect your access to benefits?

What would a sensible government department do if your mobility or health improves slightly due to a tool provided by that department? Well, in the case of the clever, clever boys at PIP, they do the only reasonable thing! They take the car away.

Seriously! Between 2013 and 2017, over 50,000 people had their Motability cars and wheelchair accessible vehicles taken away from them due to benefits cuts and reassessments[13].

And Motability isn’t just for cars. You can also get electric wheelchairs through the scheme, and thousands of disabled people have literally had their wheelchairs confiscated because of often minor improvements in their health.

Personal Independence Payment, taking away personal independence. Seems like a misnomer, surely?

As a wheelchair user, I feel fairly confident saying that wheelchairs benefit mobility. They open the world up to us and give us access to so much. The hashtag #WheelchairsAreFreedom[14] on Twitter will give you a brief insight into the wonderful liberty that chairs bring to many. They also personally benefit my health. Taking mine away would be a fantastic way to decimate my health again, especially with the amount of travel I do, and bring it back to when I was regularly housebound for days most weeks. Often, our adaptations and equipment are a delicate interdependent system, and literally fucking confiscating a major part of that system rarely does disabled people, or public funds for that matter, any good.

I went to IKEA last week, to pick up a few things for my office where I’m currently filming. But IKEA is huge – there’s no way I could walk that whole distance. So, I used my wheelchair, as I do in all big shops, at airports, and when abroad. Disability benefits in the UK act like if I can get around IKEA by using a wheelchair, the obvious thing to do is to take away the wheelchair.

I don’t think I really need to explain why that’s ass-backwards.

Surveillance

It’s no secret that disabled people experience an intense level of public scrutiny in day-to-day life. Whether it’s tales of benefits scroungers or lazy people faking a limp for a free wheelchair ride at the airport, our society is full of plenty of people willing to cross-examine disabled strangers as they go about their lives.

There’s a perception, especially where I’m from here in Northern Ireland, that countless thousands of people are “playing the system” to get access to disability benefits that they’re not entitled to. To swan around in their ill-gotten “DLA cars”. This leads to a culture of suspicion, but it specifically affects disabled people’s behaviour and freedom too.

It’s very difficult to hold PIP assessors to account for their behaviour. As we’ve learned today, there’s plenty of reasons why someone may want to record their PIP assessment to prove that things in a report are incorrect, or to pursue complaints against assessors. However, disabled people have to individually request permission to record their assessment in advance of the appointment, and the assessors can turn this down without reason, and often do without notice. To be allowed to record, you need to have tamper-proof, secure equipment[15] that produces two identical physical copies of the recording that are ready once the assessment is over, which means a dual cassette recorder or a dual CD burner[16]. Because it’s 2003 or something. Both of those pieces of equipment are very expensive – up to £1,500 in some cases – especially for disabled people trying to access benefits. Mobile phones and laptops are not permitted as recording devices as they’re not seen as suitable equipment. It’s perhaps of no surprise then that years into the rollout of PIP in Northern Ireland, the Department for Communities said that only 13 people had successfully recorded their assessment interviews the “proper” way.[17]

That seems a little unfair, surely? Well, more and more people are turning to covertly recording their assessment interviews and using those recordings to overturn benefits denials, because often the reports produced are so completely at odds with what occurred in the assessments. For legal reasons I can’t recommend you do this, but I can show you examples of where it’s been successful. One such case is with Nev Cartwright[18] in 2017, whose PIP report was littered with falsehoods and lies. Despite government protest, his tribunal judge permitted a transcript of the report to be submitted as evidence, and it was used as key evidence to award his benefits.

If the Department for Communities is still watching, rest assured that I would never, ever even consider doing things like that and would definitely never ever get an external hard drive just for those backups.

This practice has also extended to other benefits too; “somewhat antagonistic” disabled troublemaker Jonathan Hume broke the rules and leaked a recording of his own Work Capability Assessment[19] for ESA, another benefit many disabled people are entitled to. In it, he forced Maximus, the assessors contracted by the Department for Work and Pensions, to admit they were asking disabled people “brutal and dangerous” questions about their mental health, including coarse and intrusive questioning about suicide and self-harm.

As disabled journalist and author of fantastic book “Crippled”, Frances Ryan writes in the Guardian in 2018, of over one-million cases of alleged benefit fraud between 2010 and 2015, 85% were completely without merit. Many thousands more were also found to be false through investigation[20]. Members of the public are encouraged, sometimes implicly, sometimes explicitly, to report those they perceive as breaking the benefits rules. For someone like me, a wheelchair user who can walk short distances, that means that standing up to get an item from a high shelf in a shop, or rearranging my legs, or even moving a foot can get stares and disapproving glares. I know that for myself, that often means going as far as changing when and how I use mobility aids to reduce the risk of such attitudes coming to the surface in others.

For other disabled people, this translates into fraud investigations through anonymous tip-offs, and not-uncommonly to their income being taken away.

Fellow disabled creator Annie Elainey has a great video[21] on “spotting fake disabilities”. We’re much less likely to be “faking well” than “faking sick”.

As a society, we have an insatiable need to categorise disabled people as “good disabled” or “bad disabled”. If we get on with our lives and don’t complain, don’t claim benefits and carefully fit inside the definition of disabled the public has, we can be good disabled. If we’re loud, or rely on assistance, or have the awful characteristic of having a human body with its accompanying complexity, we can be bad disabled.

The outcomes of disability benefits cuts range from social isolation, worsening health, destitution and homelessness, and death by suicide. 650,000[22] disabled people in the UK were officially destitute in 2018[23], a number that’s growing and increasingly attributed to benefits issues. For context, that means roughly 1 in every 100 people in the UK population are destitute disabled people. That is incredible.

And that’s just for people who already have disability benefits in the first place. Those entering the system for the first time often have enormous hurdles to jump, and waiting times can be long. Since 2013, over 17,000 people have died[24] waiting for decisions to be made regarding their benefits applications. 17,000.

There’s another big impact on disabled people that comes from surveillance culture. Along with suspicions and accusations of fakery and “sponging off the systems” comes a significant and steady increase in abuse, hate crime and violence against disabled people.

In 2018 alone, figures from England and Wales showed a 33%[25] increase in disablist hate crime over the previous year alone. The largest category of abuse reported in these figures was “violence against the person”, but the biggest increase was in fraud and financial abuse, which increased over 1000% from the previous year.

So not only are people made financially insecure or destitute by reassessments, disabled people are becoming less safe, both in private from their families and carers, and from the general public, because of the disablist culture which society’s spotlight of receivers of public funds has developed.

In addition to all of this, the UK Government has been found to be using biased methods to assess disabled people, and that benefits denials hit poorer areas and areas with more sick and disabled people hardest.[26]

Despite all this, it’s difficult to uphold your own rights during assessment for PIP at all – earlier this year, local media in Northern Ireland reported that Capita has been cancelling multiple assessment appointments which were due to be monitored by independent human rights monitors at the request of disabled people. [27] Curious.

The Threat of Getting Better

So, we’ve seen that things are perhaps pretty grim for disabled people claiming PIP. But how do we move beyond this? Well, we could look to the past. Disability benefits haven’t always been this punitive, and reverting to the old Disability Living Allowance system would be a good move in the short term.  It would mean no more dehumanising reassessments for some people, and less fraud by assessors. It would measurably improve the lives of disabled people right across social demographics.

However, DLA was better, but it wasn’t perfect. How we move beyond where we are now to somewhere ideal will depend on whether we look beyond the current benefits system that’s in place.

The UK likes to see itself as a leader in disability rights, and at different points in history that has been at various levels of being true or being a massive porky pie. At the moment, the UN has directly called us out for being massively abusive to disabled people, so it may be time to come off our high horse for a bit.

Disability rights in the UK have always been hard-fought and hard-won, from forceful campaigns to deinstitutionalise by the independent living movement in the 70s and 80s, to disabled activists closing major bridges in London by chaining themselves to buses to protest inaccessibility in the 90s. It has always taken bravery, resolve and anger to change disability rights for the better in the UK, and we’re not even standing still right now. We’re rolling backwards every day. Alongside benefits for disabled people being cut to ribbons, the National Health System is being sold off piecemeal to the highest bidders by consecutive Conservative Governments[28]. A better benefits system is not going to be handed to us.

The state of disability benefits in the UK is the result of of a sweeping set of changes brought in by various neoliberal UK governments, to attempt to shrink public expenditure and to “make work pay”. The way disability and out-of-work benefits in the UK work is based in a threat model where compliance to arbitrary requirements is enforced through the threat of destitution, removal of social care, or incarceration. It’s useful to think of these benefits as part of the larger programme to cut the welfare state to ribbons, rather than a standalone design issue which can be solved within capitalism. PIP will never be compliant with human rights. PIP will never provide justice for disabled people. PIP will never be humane, and PIP will never be justifiable. It’s an expensive human rights abuse that has ended up costing 20% more than the old system to run[29], despite being introduced to save costs. The financial toll is enormous, but more importantly, the human and civil rights of disabled people, our quality of life and our lives themselves have suffered, been harmed and been ended by PIP and the environment of suspicion around it. People dying of terminal illness have had their dignity and humanity ripped from them by fraudulent assessors making more in two days than they would in a month on benefits. Their final days were ones of dread and destitution rather than care and calm. Despite failing even basic standards of accountability and safeguarding, Capita, Maximus and ATOS maintained and maintain contracts worth billions of pounds, and they get away with ruining the lives of many of my friends, as well as countless tens of thousands more across the UK. People will continue to suffer, people will continue to be evicted, people will continue to decline in health, and people will continue to die without a penny until this system is changed.

There are ways to make sure you’re treated as fairly as possible in the current system. Disabled people going through assessments have a right to bring advocates, human rights monitors or a friend to assessments, and a right to record assessments. Do not give assessors an inch. Do not give Decision Makers an inch. Do not give any part of the disability benefits system an inch. Because the experience of hundreds of thousands of disabled people in the UK is that when given an inch they’ll take a mile.

I was hoping that I would be able to come up with a catchy and inspiring end to this video that would sum up where we need to go with this, but to be honest I’m just so angry that I’ve been at a loss as to what to say.

What I do know is that under a Conservative government intent on pushing Brexit through regardless of the consequences, it’s going to be a turbulent future for folks like us.

There’s an election next week in the UK on the 12th of December. My ask to you is that you vote for disability rights, for human dignity and for a compassionate public safety net. The following is my opinion and not that of anyone work with or for: do not vote Tory. Do not vote for the Conservatives. What I’ve talked about today is principally their fault, as most of it was introduced during the Conservative and Liberal Democrat governments from 2010 to today. Vote Labour, vote Green, vote Lib Dem even if it’s the best way to keep the Tories out of your local seat.

I’d like disabled people to be believed. To be genuinely believed. To be supported, and accommodated, and to be part of society in the fullest way. I don’t think that can happen with PIP, in any form. There’s something we can do about that right now. Let’s go.

[1] https://www.turn2us.org.uk/About-Us/News/What-is-the-cost-of-a-disability

[2] https://www.theguardian.com/society/2016/dec/27/private-firms-500m-governments-fit-to-work-scheme

[3] https://publications.parliament.uk/pa/cm201719/cmselect/cmworpen/829/829.pdf

[4] https://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/news-parliament-2017/chairs-comments-pip-and-esa-17-19/

[5] https://www.disabilitynewsservice.com/pip-investigation-welfare-expert-says-two-thirds-of-appeals-involve-lying-assessors/

[6] https://www.disabilitynewsservice.com/pip-investigation-lie-after-lie-after-lie/

[7] https://www.leonardcheshire.org/

[8] http://www.poverty.ac.uk/report-disability-government-cuts-benefits/benefit-cuts-%E2%80%98hitting-disabled-people-hardest%E2%80%99

[9] https://www.independent.co.uk/news/uk/politics/government-spending-cuts-human-catastrophe-un-committee-rights-persons-with-disabilities-disabled-a7911556.html

[10] https://www.disabilityrightsuk.org/sites/default/files/word/concludingUNCRPDobservations.docx

[11] https://www.disabilitynewsservice.com/un-poverty-report-newton-refuses-to-apologise-for-misleading-mps-about-report/

[12] https://twitter.com/ellenfromnowon/status/829320632089321472

[13] https://www.bbc.co.uk/news/uk-39575293

[14] https://twitter.com/search?q=%23WheelchairsAreFreedom&src=typed_query

[15] http://www.capita-pip.co.uk/en/assessment-process.html

[16] https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-1-the-assessment-process

[17] https://www.irishnews.com/news/2018/01/06/news/stormont-tells-pip-claimants-buy-your-own-audio-equipment-for-assessments-1226159/

[18] https://www.bbc.co.uk/news/health-41581060

[19] https://www.disabilitynewsservice.com/maximus-admits-using-brutal-and-dangerous-suicide-questions/

[20] https://www.theguardian.com/commentisfree/2018/feb/01/spy-on-your-neighbour-britain-demonisation-benefit-claimants-disabled-people

[21] https://www.youtube.com/watch?v=sIOcKpSVp4k

[22] https://www.theguardian.com/society/2018/jun/07/universal-credit-tips-poor-into-hardship-says-charity

[23] https://www.theguardian.com/society/2018/jun/19/ministers-welfare-cuts-disabled-people

[24] https://www.independent.co.uk/news/uk/home-news/pip-waiting-time-deaths-disabled-people-die-disability-benefits-personal-independence-payment-dwp-a8727296.html

[25] https://www.independent.co.uk/news/uk/disability-hate-crime-rise-latest-figures-united-response-a8583751.html

[26] https://www.theguardian.com/society/2016/aug/09/biased-fit-for-work-tests-poorer-disabled-people

[27] https://twitter.com/PPR_Org/status/1095795493597261824

[28] https://www.businessinsider.com/theresa-may-nhs-brexit-free-trade-deal-donald-trump-2018-2?r=US&IR=T

[29] https://www.disabilityrightsuk.org/news/2019/january/obrwelfaretrends