This blog was written in collaboration and conversation with a friend, who would prefer to remain anonymous.
We will not tolerate any form of abuse… I started reading the sign in the waiting room of the Centre for Health and Disability Assessments. Back before the Covid-19 lockdown I was waiting with a friend for an appointment which would determine whether she was still eligible for Employment and Support Allowance. MAXIMUS is the most recent company contracted to carry out these assessments, which determine what money people can claim to support their disability needs.
I carried on reading the sign:
We have a duty of care to both our customers and our staff. Most of our customers are polite and understanding. We will treat our customers with respect. We will not tolerate:
- Verbal abuse
We will be strong in our actions, including prosecution, against anyone responsible for abuse.
Had the Centre experienced violence before? I looked around and saw people quietly waiting in the chairs bordering the room. There was a woman with crutches waiting with what appeared to be her husband and daughter. There was a man in his twenties who smelt a little of booze and was quietly twiddling his thumbs, whilst his social worker sat next to him reading a newspaper. And there was me and my friend waiting for her assessment on her back condition, which has taken her in and out of hospital and in need of carers in the home for years. The most violent thing to me in that room was the poster itself, acting as a forceful and permanent threat to anyone who stepped out of line. The security guard by the door and the insecurity of everyone’s position made the power dynamics quite clear.
During the Covid-19 lockdown, I have seen numerous activists and graffiti artists saying we cannot go back to ‘normal’. That we should use this sudden breakdown of social relations as a moment for radical change; to reconstruct the world we want to come back to. This is sometimes hard to contemplate when we have seen inequalities entrench themselves further with lockdown, as described in my own and Alfonso’s previous posts. But one way in which Covid-19 has brought about a decrease of surveillance is through the suspension of any disability assessments during lockdown. It is momentarily assumed that those that ask for help, need it. The insecurity in that room previous to the moment of rupture in which I write this, was because everyone waiting was reliant on the assessment to justify their needs for financial help. Help to pay for food and rent when they cannot work, and to pay for carers who may need to help with getting up out of bed, or daily tasks such as the shopping and cleaning. These assessments were introduced in the UK for everyone needing disability benefits to distinguish what one national television programme called the “Saints and Scroungers”; to ensure no one was faking their illness to thieve financial benefits from the welfare state. Unfortunately, the only way of being a saint in that tv show was if you were living in stress and poverty by not claiming anything from the state. Everyone in that room, therefore, who were all claiming money from the state, was a suspected scrounger. Assumed guilty.
As we were waiting, two young men came rushing in, probably about twenty or twenty-one years old. They were both in surfer-style clothing and were clearly quite athletic given the panicked entrance they’d just made. Not all disabilities are visible. They hurried up to the woman on the desk, my friend said she could feel their fear. “So sorry we’re late, we got stuck in traffic!” one of them managed to get the words out whilst catching his breath. I wasn’t surprised some people were late, given that this vital centre was hidden from view in the backstreets of a town many had to travel miles to get to (including us). Anyway, surely a disability assessment should make allowances given that anything from mental health, to learning difficulties, to physical health might impact people’s ability to manage timekeeping in the style of a productive worker.
“What’s the name?” the woman asked, unmoved by the situation… “Well, looking at this you’re ten minutes late and seeing as we’re running behind, we’re not going to be able to see you – you’re going to have to rearrange.” “Ahh really?!” they asked, still trying to catch their breath. The two guys looked at each other. No words, no retort. They walked out; shoulders slumped. Defeated. I watched as they lit up a cigarette the other side of the glass door; exasperated and powerless. My friend and I looked at each other – her appointment was half an hour ago and we were still waiting. It didn’t help that they only had one assessment room on the ground floor and no lift in the building. My friend was using me as a prop, unable to sit in the chairs provided, struggling with the pain. There’s no way these guys missed their slot. MAXIMUS are allowed to be late, but those coming to get assessed are not.
Only a few weeks ago the centre cancelled on us at the last minute. We were waiting for the car which they had arranged to take my friend to the centre. A request for transport is the only evidence they would take from the doctor involved in my friends’ care. But as the minutes ticked by, we too started to become fearful that we wouldn’t make it on time. If you’re late, or you have to rearrange your appointment more than once, you are deemed ‘non-compliant’ and your case gets penalised. Two years ago, my friend couldn’t attend, as she was bedbound and they stopped paying her a few months later; without notice. That was another frightening and arduous time.
Back in the present, we were frantically phoning round all the offices. Going round in circles. It was a Saturday and many of the numbers we tried went straight to answer machines. Finally, a human being. The assessment was cancelled, no car was coming. They just forgot to tell us.
This might seem dramatic. But the preparation for the assessment is more than just making sure someone has booked the day off work to accompany you. It is the kind of mental preparation you need to defend the income that is paying your rent, your food, your care. My friend was hyper aware of the media reports and whistleblowers describing the ways Atos, the previous company in charge of these assessments, had been trying to catch people out. And the memories of my friend’s previous assessments weren’t encouraging.
They watch you as soon as you get out of the taxi, she told me. That’s why the walkway is there. Cars can’t go right up to the entrance. Instead there is a walkway painted in yellow on the tarmac with a perfectly proportioned stick man painted down the middle, helpfully illustrating how one should stride to the entrance. When she had to go to a tribunal previously, to defend her need for care, she found out that when she was physically struggling to be polite and not cause a fuss, to open doors and pull out chairs, this was ‘evidence’ used against her. They never asked if these actions caused her pain or if she felt able to repeat them. It is just a tick box. And worse than the surveillance, last time they caused her immediate, physical, pain. They wanted to check her reflexes by tapping her knee. They tapped the first knee and her whole leg and lower back went into spasm. She put her hand up, and asked the nurse to stop, clearly in pain. The nurse ignored her and tapped the other one anyway, sending another, this time unexpected, shock up her spine. The spasms, nor the pain, were recorded in her report, and my friend was deemed fit for work. It took the stress of a tribunal to have her benefits reinstated.
The focus of this monetary benefit, as the title “Employment and Support Allowance” suggests, has become one of getting people back into work. There is some work my friend could and wants to do. But the economy isn’t made for someone with the unpredictability of her condition. Where she can be bedbound for days, weeks, or months at a time, and the medication she takes can cause temporary cognitive and neurological problems. If she even went for an interview, would they understand? Fear and guilt are the oscillating constants, my friend tells me. She feels guilty that she needs the benefits and her carers, but she is fearful that if she tries to do a little work, they will stop her benefits completely. And if an employer isn’t happy with her long stretches of illness, she would have to reapply for benefits all over again. When she is lucky enough to have some good days, to venture outside of her living room, it doesn’t come without the guilt and fear. Would someone report her? She recalls overhearing someone in the pub: ‘Look at her wasting our taxpayer’s money, she doesn’t even look sick.’ She’s aware that CCTV footage from supermarkets and public spaces, as well as social media images, can get used to build a case against her. She is always, potentially, being watched.
You’ve got to put it on a bit, people were advising my friend beforehand. To make sure she got the support they knew she needed. But she didn’t want to do that. She wouldn’t dream of going outside without her usual attire. A dress, make-up, and some boots or sandals carefully selected from the paediatric shoe shop. She wants to be polite, strain herself to help others. She wants to keep her dignity. But after spending some time with her preparing for this assessment, I realised she didn’t need to ‘put it on’. Rather, it was a process of taking off the act; the mask she puts on in public to hide the pain, and show everyone that she’s okay. Taking off the mask is an emotional process in itself, and one which causes unacknowledged pain and duress, especially in front of strangers.
Back in the assessment centre we finally got called, our turn. The assessment nurse was stern that we were not allowed to record the meeting but assured us that she would not do anything to cause harm. The interview was fast-paced and as soon as the assessor had figured out where to place my friend, which box to tick, she moved on to the next question. There was no time for my friend to process the questions, elaborate, and make sure she gave all the information. The nurse didn’t want to see the huge folder of daily care notes we had carefully packed as evidence – she said she didn’t want to know what the carers spread on her toast every morning. We had to push for her to glance at the daily recordings of pain levels and photocopy them as evidence. As we got to the end, I could see my friend getting more nervous in anticipation for a re-run of the physical exam.
“Oh no I don’t need to do a physical examination with you, I can tell that you’re not well. It’s just if people come in saying they’ve got a bit of a bad back.”
This decisive phrase both did and didn’t make everything feel okay.
There was of course a great relief that there was not going to be a potentially harmful physical examination. But the immediacy of that ‘benefit scrounger’ figure made it clear they were constantly on the look-out for that back that’s not quite bad enough. Whilst they say they acknowledge people can have good and bad days; the day of the assessment has really got to be a specific kind of a day. A day that’s good enough to make it to the appointment, but one that’s bad enough for them to be convinced you need support.
When my friend finally got the letter, she found she had a reduction in financial support. She didn’t get enough points. Ironically, she ended up in hospital not long after.
I looked back up at the poster in the waiting room: We will not tolerate any form of abuse. The only form of abuse I saw was the abuse of how people with disabilities are being treated and assessed by the benefits system and the contracted assessment centres. Not only causing physical harm at times but forcing people to strip themselves of their coping mechanisms, and be denied their dignity and a good life, whilst living with a disability. The poster is just another form of abuse – putting the potential for violence back onto those in need of support.
When talking to my friend about the world we would want to reconstruct post-Covid, it isn’t about cancelling or getting rid of these assessments. It’s the abuse we will not tolerate. Could surveillance be done with care? We’re still stuck on this one. Where many conditions that affect people’s lives are constantly changing, and unpredictable, my friend suggests it would be comforting to know that support can be reactive to changing situations. These assessments could be about understanding needs. Not catch-you-out assessments. They could be about bringing all the different forms of expertise together – from carers, doctors, physios, surgeons, and the patient themselves. To understand where support is needed, and necessarily therefore, where it isn’t. Finding ways to help people live a comfortable and good life. One which supports people with work where this is possible and valuable to them. And one which makes people feel justified and worth the support they receive. At a time where surveillance of disease is becoming necessary to move us out of lockdown, I have to ask again: can surveillance be done with care?