We Have To Talk About This - Disability and Sickness Benefit Reform

Hello, it’s Cass!

Buckle up: This is a LONG one.

 It’s been an exhausting nearly two weeks for me; it started with my call-in to the Kaye Adam’s show on BBC Radio Scotland, talking about my very real fears about disability and sickness benefit reform. When you have even the people at the top spouting misinformation about those claiming ESA and PIP (or ADP in Scotland), you can understand there are a lot of people who are very, very scared right now.

I’m talking about the use of “fraud” so often, likening these benefits to pocket money which should be withdrawn - language that infantilises those with disabilities and chronic conditions - along with the narrative that if criteria are tightened and it made harder, that will somehow encourage people into work.

The reality is different: PIP and ADP are there as independence payments that help mitigate some or most of the additional costs of being disabled - for example on the power wheelchairs which most don’t qualify for on the NHS, or the supplements that keep us healthy, the specialist diets for conditions like Crohn’s or MCAS (ditto), the heat pads to help with pain and spasm, and so on. It helps pay for the therapies we cannot get readily or in a timely fashion on the NHS, like subscriptions to services like Calm for mindfulness or quicker access to clinical psychology, private GPs and specialists, private prescriptions when medications aren’t available on the NHS, private Physiotherapy - because NHS physio sometimes isn’t enough in terms of hands on treatment. And lord knows you cannot get acupuncture - a well evidenced treatment for chronic pain - on the NHS since cuts. They pay for assistive technology that employers won’t provide, in some cases, where that is also useful for the day to day or part costs from Access to Work have to be covered. And it pays for care. The people who come in, make sure we are taking our meds, helping us eat nutritious meals and preparing them, washing and dressing us - including for those people who work. Because, of course, PIP and ADP are not means tested and, assuming you get past the assessors who are so biased and ableist they cannot possibly imagine we are capable of using our brains and voices to work when we have adequate help - you CAN have PIP and ADP and work.

That’s one myth: Another one is the scale of benefit fraud. With PIP it’s less than 0.4% (and some of that is DWP error). In UC it’s around 10% - and we believe this is overall, so not necessarily related to the sickness and disability aspect. Tax fraud is seven times more than that.

That it’s easy to claim benefits, particularly disability ones, being handed super expensive cars etc just by saying we want one. That’s another myth: Those of us who have had to claim benefits will tell you about the dehumanising assessments, the long periods, sometimes without any available support or assistance, to complete benefit applications that are designed to trip you up. The sheer volume of evidence that you need to supply; medical records, letters of support, statements from specialists (all of which we need to organise), permissions to contact to collate, updates on the social side of things for GPs which they may not know - it’s an endless list. The long waits to hear about whether or not your decision has been approved and the level it’s at. The assessments are awful. I got standard daily living first time applying for PIP, which I didn’t feel empowered to challenge, despite the fact I could not wash myself and was struggling to feed myself decent meals. Around £23 billion in PIP and similar benefits goes unclaimed every year. This is partly down to those who don’t realise they’re eligible. But it’s also down to those who are incorrectly refused and simply don’t have the fight in them to challenge decisions. Less than half of all PIP applications get approved first time - it often takes a mandatory reconsideration or appeals tribunal to overturn that. It’s worth looking at the Benefits and Work website.

We need to talk about the level of abuse those disability and chronic illness advocates and activists - including myself - are facing online and in person. I have seen testimony of people who are too scared to leave the house for fear of abuse, just because they have a blue badge. I know of others - including myself - challenged for sitting in priority seats or using mobility aids. One TikTok I made recently ended up with 190 comments of which at least 60% were at the least demonstrating unconscious bias, often outright ableism, spreading misinformation about me. The police are due here shortly to take my statement and see the evidence. I often call to memory two of the stories a dear friend has shared with me about the general public trying to take their personal wheelchair for someone else “because they don’t look like they need it” and people filming them walking the short distance to the boot of their car to get their wheelchair out so they can use it (ambulatory wheelchair users are a thing. I am one of them). Then there’s my visually impaired friend who discovered videos of them, as well as pictures, had been shared across social media for their using a phone: Smartphones have assistive tech built in precisely so visually and other impaired people can use them. This week I’ve been told that being able to write a post or make a TikTok means I’m fit to work an 8 hour shift every day. I’m not, actually, as determined by my pension agency, an independent occupational health expert, multiple clinicians and other professionals and even the DWP (plus Social Security Scotland) - but of course, Joe Public, neither qualified to assess nor involved in my care IS qualified to assess. And report fraud, which they do. The non existent fraud.

A sad truth is that many people in society are ableist or at the least unconsciously biased. The former is just outright hateful, while the latter goes unrecognised as it’s based on our preconceived ideas that are down to our experiences, upbringing, education, family and community. The latter, in some ways, does a lot more harm than the former, because it’s often very difficult and energy consuming to attempt to educate them. Many of us believe that not only should Diversity and Equality education be taught at all levels of education and employment, being renewed regularly in much the same way, say, fire safety is, but it also needs massively improved. On top of that, unconscious bias training should be made mandatory for all - it’s been an incredibly useful tool for me.

Because this is a large part of the problem, clear in so much of what is said by people like Rachel Reeves and in government paperwork like the Green Paper - full of basic errors, misinformation and inaccuracies. As well as that, plans to force disabled and chronically ill people into work simply won’t be effective without education and effective protections in law - because there aren’t enough jobs. And the recent NI hikes won’t help. A work coach isn’t going to magically make someone ready for work if they’re not getting the treatments they need (assuming they’re available) and having a supportive work environment where they can thrive. Work doesn’t always improve your health: sometimes the struggle to stay there causes stress and psychological harm so bad it becomes permanent - which is what happened to me and many others. Discrimination, lack of opportunity for education and career progression, bullying and harassment - all these things are rife, often in management. And management often don’t want to deal with it. A colleague of mine said to me recently that most of the stories they hear about the abuse we face at work was coming from current and former NHS staff. That correlates with some of the experiences we have had and heard about. Another has been told it’s the “culture” of their organisation. But apparently we have to suck it up - that’s assuming there are accessible jobs we can have, that don’t massively impact on our health to start with.

The fact is, employers and colleagues often don’t want us there, don’t want to make adjustments, have negative and inaccurate assumptions about us yet expect us to keep up with them. The law needs changed. Or created. 

If nothing else, remember this: Your views and opinions are just that. Opinions. Most conditions, diseases and disabilities are on a spectrum - no two cases will be alike, often with vastly different individual experiences. Your assumptions about conditions, disabilities and diseases may often not be remotely accurate. For example, many wheelchair users are ambulatory and can stand and walk for very short periods - but it does NOT mean they don’t need the wheelchair. Many dyslexics don’t get picked up because their reading and maths skills are good or better - but it does NOT mean they don’t need aids and support. Most neurodivergent people are NOT Rain Man or hyperactive - yet, again, it does not mean they do not need support.

 And it doesn’t make the impact of these conditions or disabilities any the less difficult on the people that have them, but having to defend yourself against the disability police - sometimes within our own communities - any the less hard or upsetting.

If you’ve met one person with Long Covid, autism, PTSD and so on - well, you’ve met one person with a condition (or more) and they’ve usually got an individual experience of it.

We are really worried, to be honest, about the further impact: Young people can have disabilities and chronic conditions. Most of us have them from birth, with complications arising later. And, of course, everyone is one infection or incident away from being disabled or chronically ill. To deny people under the age of 22 these benefits - not least because those benefits may be supporting them in education and training - is discriminatory. Plus we know so many medical, nursing and other students who gave up safety to work on the Covid frontlines or keep society going, only to catch Covid and end up long term disabled, with multiple conditions to try and manage. Many of those conditions don’t have specialists on the NHS and have limited or no treatment beyond pacing and rest. And we would argue that the latter isn’t treatment; it’s management.

There may be some of you reading this that disagree. That is your opinion. Is there fraud? Yes. There’s fraud in everything, but, as we said before, it’s so low it’s considered 0%. International bodies have said that the way disabled people in this country are treated amounts to systemic abuse - and that’s just the agencies processing benefits! We also think reform is needed - but it’s got to be far wider than piling all the responsibility and blame on the most vulnerable people in our society who don’t have powerful lobbyists to speak up for us. This government - like the last one - is getting this wrong and it’ll force millions into worse poverty and removing support or time limiting it won’t help people at all. It will make things far, far worse. Plus, bear in mind that things like benefits, prescriptions, carers allowance etc are tied to PIP - that goes if PIP goes. Carers are already saving the government anywhere up to or around £2000 per week, per person, in NHS and social care costs (what happens if you force those people back to work?). Just from Covid and Long Covid, we know the impact on informal carers already equals around £8000 per year. For those with long Covid, with those able to work usually working an average of 50% fewer hours per week, the impact is around £10,000 a year (Welsh Long Covid update).

What makes it worse is it’s obvious these consultations aren’t fit for purpose, whether it’s the overall lack of timely impact assessment or lack of consultation with those of us with lived experience or who work with us. They’re being roundly condemned and we have been speaking out about the impact. And for what? Reasons why we can’t work being demanded and then when we give those reasons, we are told they are excuses.

I’m sorry this is such a long one, but there’s a lot to get in here. Again, you may disagree, but we would ask you to look more into the figures, what the benefits are, what impact these “reforms” will have on people. We would ask you to please NOT dismiss our lived experiences OR seek to blame other marginalised groups: None of us are responsible for the fiscal failings of government or those who seek to not pay the taxes they should be.

In the meantime, please write to your elected representatives if you are affected, know someone affected or can simply see these reforms aren’t going to work. This is importantly, irregardless of what flavour of politics you support. Please stand up for your family, friends and community. Please stop and think that the person who looks fit and able to you may not actually be so. Remember you’re seeing a moment in time that may not reflect their normal or that seeing them out and about could have massive negative consequences in days, weeks and months to come.

Thanks for sticking with me through this long rant.