Housing Officer: What have you done to look for cheaper accommodation?

Me: I wasn’t aware I was expected to. However, there is no cheaper accommodation in the area, unless you have any two bedroom social housing to offer me. Then I would need considerable support in moving, as my illness means I have mobility problems, severe problems with profound fatigue, other health problems that make moving risky, and I also need to be organised to accommodate a strict routine for my health care.

Housing Officer: Have you considered taking in a lodger?

Me: I have no spare room to offer a lodger as my sons occupy them out of term time and are expected to return home once they graduate. However, I would not consider taking a stranger into my home because I am disabled and ill, therefore I am potentially vulnerable and feel that this may present an unacceptable risk to my wellbeing and safety. (See for example: Mother and son who ‘gave shelter to homeless man’ stabbed to death at family home.)

Housing Officer: Your weekly shopping average looks slightly high.

Me: Well at the moment it is for two of us. On Friday my youngest son is home for the Easter break, and I will then need to feed him too.

Housing Officer: I only want details of what you spend on yourself.

Me: Do the council expect that I leave my children without food?

(No response)

Me: My weekly shop includes essential items I can no longer get on prescription, such as eye drops, because my tear film is very poor, I don’t produce tears as I have Sjogren’s – painfully dry eyes – as part of my illness. I used to get moisturising drops on prescription from my opthalmologist but they have been discontinued. If I don’t use the eyedrops my cornea becomes scarred and I get eye infections.

I also have to buy sunblock, because I get a blistering and painful rash in the sunlight, even in winter – that’s also part of my illness.  

I have to buy detergents and toiletries that are very hypoallergenic and gentle because my skin is fragile, hypersensitive, prone to rashes and painful blistering in places because I have lupus and eczema, all of which leaves me prone to infection if I don’t treat the conditions with care. I also have to buy cleaning products and antibacterial items, to keep my home as clean as possible because my illness and treatments mean my immunity to infection is very poor. 

None of these items are available on prescription, but I do unfortunately need them. I have also included very modest clothing/footwear costs (I have to take care with footwear because I have severe Raynaud’s – a condition that causes very poor circulation that shuts down in my hands, feet and nose with even slight fluctuations in temperature – and so I need to keep my feet and hands warm.  I am prone to blisters from badly fitted shoes which then turn into serious infections and have developed sepsis at least once because of this. I also need shoes that are cushioned and support my Achilles tendons because of damage to them and my joints. 

I’ve also included modest costs for essential household items, which everybody needs sometimes due to wear and tear. I have a bleeding disorder, which affects me in a way that means I have to spend more on sanitary items than most people. I also have additional dietary needs because I am underweight, and I have IBS and acid reflux, which means I have to eat small meals frequently throughout the day. This is not a lifestyle choice: it’s because of my medical conditions.

Housing Officer: Don’t take any of the questions personally, everyone is asked the same.

Me: The problem with having the expectation of everyone having the same needs is that you then don’t have any opportunity to recognise the more vulnerable clients who need additional support because of their additional needs. Not everyone finds it easy to find suitable employment to support themselves.  Illness and disability can happen to anyone, it is sometimes a major barrier to working and I am not ill because of “lifestyle choices”: it’s not because of something I did or didn’t do. I have worked. Now I can’t. 

People are dying because of that built-in oversight and other government policies that don’t accommodate people’s circumstances and disregard their additional needs because of disability and illness. Many others are suffering unacceptable distress and harm to their health.

Housing Officer: I know.

She delivered that comment with complete and almost menacing detachment. I was so taken aback I couldn’t speak for a few moments. She didn’t even pause for breath, however.

The part that was by far the worst during the interview was this matter-of-fact agreement that people are dying as a result of the policies that she was calmly sat implementing.

It was delivered almost like a veiled threat: that if I didn’t or couldn’t comply with certain unstated behavioural requirements, which were not made explicit at any point during the interview or prior to it, I would also be left to die. 

I was then told I must “prioritise” my rent and council tax payments above everything else.

I explained that my rheumatology consultant has also told me I must prioritise eating well, putting weight on (I weighed less than 8 stones), and keeping warm (I have severe lupus-related Raynaud’s disease that leaves me very susceptible to severe infections and gangrene in winter.) I don’t have enough income to do both of those things, as it is. I explained again that I could meet my housing costs before I had to pay council and bedroom tax, and have managed to do so until now, and this is why I had applied for DHP.

My comment was met with silence. 

Apparently, not falling into rent and council tax arrears is more considered more important than meeting basic survival needs such as eating and keeping warm.

I was also almost casually asked if I had any pets or Sky TV. Next I was asked if I had a TV, broadband and a mobile phone contract. I was asked how much I spend on my phone monthly (it’s a pay as you go). I felt I was being turned into a Daily Mail stereotype by bureaucratic questioning that was designed to find ways of dismissing me as ineligible for support in an arbitrary way, under the cover of mundane chit chat.

The more I responded the more demand was placed on me to justify my outgoings, the more information I presented, the bigger the scope for potentially finding reasons for refusing my application.

ESA and PIP assessments work in much the same way – assessors fish for as much information as possible about your everyday life so they can use it to try and claim you are more able to work and less disabled than you and your doctor are claiming.

For example, “Do you watch soaps on TV?” – a deceptively conversational and informal question – may translate your response on the report potentially, as “Can sit unaided and concentrate for at least half an hour”.  The aims and motives behind the questions are deliberately obscured, so that you don’t have an opportunity to explain or clarify any details or challenge the assumptions being made to justify ending your lifeline support.

That gold locket and chain that was your mother’s, which you wear all the time because you can’t take it off, as the clasp is too difficult for your arthritic fingers, becomes a sign of finger and hand dexterity to an assessor, as it’s just assumed you take it off and put it on again. When I had a chest x-ray recently, I had to ask the radiographer to take it off. The whole process is designed to search out ways to discredit your doctor’s and your own account by any means at all concerning the level of your disability and the impact it has on your day to day living and work capability.  

Agents of state control and “changing behaviours”

Behavioural conditionality has now been built into every aspect of social safety net provision, this is to save costs and ultimately, to justify the dismantling of social security, public services and healthcare provision. It is justified by an ideological narrative of the neoliberal “small state”, austerity and paying off the national deficit, the “unsustainability” of safety net provision and the state re-translation of competitive individualism into a rhetoric of self help, thrift and “personal responsibility”. Only for the poorest, of course.  Thrift and self help doesn’t apply to government ministers, whose lavish lifestyles, food and fuel, housing costs, and so on are funded by the tax paying public. 

The behavioural change programme is being applied only to poor and vulnerable citizens. Against a backdrop of austerity and welfare “reforms” (cuts), millionaires were awarded a tax cut of £107,000 each per year, exempting them from the same obligation to practice personal responsibility, thrift and self help. The Conservatives’ low tax and low welfare society means that perversely, those who have a lot of money are not expected to contribute to our society, whereas those who are low earners or unemployed are expected to pay down the deficit and pull themselves up by imaginary bootstraps.

If you suffer or die in the process, apparently that is okay because the government inform us there is no “causal link” between such “adverse” consequences and their adverse policies. However, a correlation has been well-established by independent research and the narratives of many of those affected by the draconian policies, as well as campaigners.

What really struck me during my housing benefit interview was how the ordinary and seemingly reasonable woman in front of me seemed to suddenly shapeshift into a resentful, disapproving and prejudiced state drone who didn’t feel I deserved any support, about a third of the way into our interview.  I felt like Iain Duncan Smith was conducting the interview.

The government have built up almost impenetrable walls of authoritarian bureaucracy around social security provision, and a hive mind army to deliver their distinctive and punitive approach to poverty, which is now all pervasive. All bullies seek the “behavioural change” of others to get their own way.  Conditionality is built upon a behavioural change agenda to prop up neoliberal policies aimed at removing social provisions that the poorest citizens need to survive. Work is no longer the panacea it is held to be, since labour market deregulation and intentionally low social security creates a reserve army of labour, which “incentivises” profiteering employers to keep wages low. 

Even a trip to your GP is likely to trigger the question “do you work” these days, as job coaches are co-located in surgeries to enforce the government’s “work cure” and suck you back into a supply side reserve army of desperate labour. However, sometimes people are simply too ill to work. The state and its wall of bureaucracy, however, are absolutely refusing to accept this.

There is no end to intrusive state nudging and shoving, especially when you just want to be left to cope with being progressively ill in peace. The government believe that illness and disability are simply a set of “faulty” behaviours that need correcting, and that people will respond to a particularly punitive form of operant conditioning in order to change their behaviours to bring about a miraculous recovery. Work is considered a “health” outcome. However, work is a work outcome and has nothing whatsoever to do with a person’s health. In my own experience, work considerably contributed to the progression of my illness. Being constantly expected to work has also contributed significantly to the deterioration in my health.

Furthermore, I don’t recall giving consent for my taxes and national insurance to be used to pay rogue companies that cost the public billions to “save” relatively meagre amounts in welfare and public service spending just to punish, bully and coerce people who need support.

Nor did I give consent to a state experiment in value-laden, ideological, poorly designed and prejudice-determined operant conditioning on ill, disabled and unemployed citizens. 

Cameron was surely mocking when he used this phrase as a slogan from Terry Gilliam’s darkly dystopic film, “Brazil”, which was coincidently about nightmarish totalitarian bureaucracy 

There were no innocent and random comments from the interviewing housing officer. Almost every question was geared towards making me feel guilty for being poor and not being in work, I was challenged over every single penny I spent, as if I have no right to food, items that I need to meet my complex health needs, and no right to extend an ordinary gesture of basic kindness and decency by taking in a stray cat that had no home and no-one. I’m surprised I wasn’t asked to sell everything I had bought and kept from when I worked.

I had no idea that disabled people could be refused support if they had a pet. Regardless of whether that pet was one you had when you were in better circumstances, working. How utterly callous to expect people to dispose of their cherished companions when they experience hard times, it’s cruel on the person and cruel on the poor and innocent animal.

Most pets cost very little to feed, too.

My cat is a great source of calm and comfort for me, at a time when I am struggling trying to constantly adapt to a progressive illness, and increasing absolute poverty.  I couldn’t bear to part with her.

I wonder what the decision-makers, who are gatekeeping funds that I have contributed to – and they are meant to support disabled people rather than punish them – expect a person should actually do with a cherished family pet, which may have been a part of a family long before severe financial problems and illness came along.

It’s rather like financially penalising people by cutting off support for some children just because a parent has lost a job and encountered difficult times. It’s a Poor Law/Work House mentality – we are all categorised as either “deserving” or “undeserving” based on our previous choices as well as our current ones. How very dare anyone have anything at all that gives them a little joy and comfort if they become too ill to work. Even if they worked for it prior to losing their job or becoming ill.

This said, those people who have never been able to work should be supported, unconditionally and without any resentment, to meet their living needs and to lead safe and secure lives. This is how a democratic, decent and civilised society should behave, after all.

I don’t need a behavioural change agenda. My behaviour didn’t put me in a position of hardship: ill-conceived state policies that disproportionately target ill and disabled people for austerity cuts are the root cause of my financial problems. I am not ill because of my behaviour, my medical condition arose because of a complex interplay between genetics (my mother and her father had a autoimmune/ connective tissue disease, and both my maternal aunt and uncle do), hormonal events (pregnancy was probably the trigger in my case, as that is when I first became ill, 21 years ago) and possibly some environmental triggers too, such as an infection. It was not because I did or didn’t do something. No-one could have predicted a pregnancy would trigger a autoimmune/connective tissue disease. No-one knows how it will progress either, unfortunately. I managed to work for some years whilst being ill, and stopped only because I absolutely had too when I my symptoms became too severe.

Neoliberalism is founded on the principles of “market competition” and competitive individualism. In competition, a few people do very well and “win”, and many more don’t. That is the nature of competition. This is how it works.

Neoliberalism itself causes inequality and poverty, whilst rewarding most the people who are already very wealthy. Addressing the “behaviours” of poor people to punish them into not being poor won’t change the consequences of inequality because of our socioeconomic organisation one bit. Poverty, by it’s very nature, reduces behavioural choices and opportunity.

It’s really the government who need to change their policies and prejudiced behaviours, not poor, ill and disabled people.