More Than Bricks and Mortar

brickwall1

 

“We don’t deal with people we deal with bricks and mortar” Housing Officer, Royal Borough of Kensington and Chelsea.

The statement by a Housing Officer in my local Borough was very revealing. The comment was made at a public meeting on “Co-production”. She was clearly confused at having been told to attend as she genuinely believed her role was not about people. Of course, this is a particularly ominous statement as only a few years later, 72 people died needlessly in her very “patch” – which included Grenfell Tower. The focus on the provision of at best a house rather than a home ignores the impact lack of suitable housing can have on the human beings who are so often the recipients of the results of decisions made about them without them.

Having made the transition from homelessness to a social housing tenancy, I have come to redefine my understanding of Squalor – one of the Giant Evils Beveridge defined in his then groundbreaking report. I believe he meant it in a “bricks and mortar” sense. Squalid conditions were clearly the key challenge in those times. These days it has deeper connotations.

An archaic definition of “stigma” is a brand on the skin. I see squalor as also being about mud that sticks. People forced to rely on Benefits and if lucky, housed in social housing, are increasingly viewed as being of lesser worth – the “undeserving poor”, the “feckless” etc. I noted with horror the building of so-called “affordable housing” in private developments with separate entrances for those lesser mortals. The creation of “poor doors” with markedly less attractive fixtures and fittings and even segregated bins to make sure even lesser the rubbish of the lesser is kept away from the throwaways of the privileged.

Screenshot (7)

In 2015 the Building Research Establishment doubled their 2010 estimate of cost to the British National Health Service (NHS) of poor housing from £600 million to £1.5 billion. They also talk “other losses to society of leaving people in poor housing such as the impact on educational attainment and economic performance” (BRE, 2015). This is an ever-worsening picture with cuts to welfare, particularly targeted at society’s most vulnerable, and to services leading to denial of basic support to an increasing number of people.

In this blog, I will focus on my personal experiences of Housing in a way that might have more impact than that glossy policy document gathering dust on the shelf. This is not meant to be yet another “inspirational story” but to show in detail what the data often used in policy can only partly convey – a story of waste of assets the system can ill afford and of immeasurable cost in human terms. It is a longer blog than usual but then, it has been a long and hard experience…

Revolving doors

I estimate that lack of safe housing delayed my recovery from a combination of post-traumatic stress disorder (PTSD) and related substance misuse by some fifteen years. It actually added layers of trauma. I was diagnosed after the death of my colleagues in the course of my job in international relations and in order to try to cope I self-medicated with alcohol. That in combination with an unsupportive working culture, led to my retirement on ill health grounds at the age of 32. I lost my home, as after sick pay came to an end, I was unable to keep up mortgage payments. Homelessness does not “happen” to “other people”.  If it can happen to me, it can happen to you.

I moved back in with my parents and with their support I appeared to be on the mend. I somehow succeeded in getting as Political Administrator to a Member of the European Parliament. Away from my family, I quickly disintegrated and starting on what became a dehumanizing process in which what remained of my identity and my mental and physical health was shattered. Very soon I had no job, no home and was adrift in London. I managed somehow to get myself to my Borough Town Hall to declare myself homeless and they agreed to house me. I stepped that day onto a joyless merry-go-round that was to spin on for more than a decade.

merrygoroun

Life for me became entirely about trying desperately to get help and find ways of getting my fragmented self safely across a sinkhole-ridden service landscape. My mental health and alcoholism were worsening and I became even more of a challenge to the system. I was too mad for Substance Misuse services, and too drunk for the Mental Health services. There seemed to be a chasm between Health and Social Services in Britain, with Housing seeming to exist in isolation on some other planet.

Over and over again I appeared in hospital Accident and Emergency Departments only to be patched up and packed off to another dingy room in some other bed and breakfast or hostel well away from where my support, such as it was, was situated. Every time I would be discharged back into these unsafe squalid places where my visible vulnerability led to me to be preyed upon leading to physical and sexual assault and rape.

My response was to drink even more to cut myself off from my reality, and had I not done so I believe I would have taken my own life. The drinking would inevitably lead to yet another admission and a few days later another exit again back into oblivion.

I felt totally disconnected from the person I was before I became unwell, the person who ran international projects and was commended for her work in the Chernobyl zone. I knew she existed but was cryogenically suspended in another room in some other part of the building to which someone else with all the power had the key. I became the derogatory labels that had been slapped on me. I assumed that was all I was worth and the “system” did little to lift me out of this pit.

Stigma Housing

Turning points

I was eventually given a place in a Turning Point supported housing project. For the first time in years I had a safe roof over my head. Turning Point clearly understood the importance to their client group often battered into oblivion by mental health and substance misuse issues of an environment in which it might just be possible to regain some dignity and start to heal. I cried with joy that I actually had a kettle and a toaster. I recall my first night there. I was so unused to being in comfortable surroundings that I thought I might not be “allowed” to sit on my bed so I sat totally motionless on an armchair not quite believing I had the right to be there.

I felt devoid of any rights by this stage. I had been stripped down to nothing and re-labelled as “vulnerable”, “complex” and “hard to reach”. I absorbed and became what was written on my labels. I believed that I was now the “undeserving poor” grateful for crumbs off the table of the worthy and happy to tolerate inhuman conditions as I was “lucky” to have a roof over my head.

It was to be a long and hard process of pushing the rock up the hill from then on but at least the rock started coming to rest a little further up each time. I was starting to break down the walls brick by brick.

Brick-Wall-2I recovered sufficiently to move on from Turning Point to a social housing tenancy. This brought with it a whole new range of problems. I was simply plonked in the nearest available space with no consideration for my mental health or precarious recovery from alcoholism. Under such conditions I stepped back again on the merry go round of relapse and hospital admissions during which every time “unsafe housing” was writ large on my notes. What did and indeed does “unsafe” housing look like?

Rogues Gallery

Wall-of-Shame

I have never grouped together the problems in two housing associations – then Servite (now Optivo), and Family Mosaic (now merged with Peabody).

This is a list of acute failures. The chronic day-to-day grind of trying to get responses to complaints, action on repairs issues, and basic levels of customer service is always there chipping away at mental and physical health in the background. At the time of writing, my fight to get decent living conditions for all tenants in my building goes on….

Crack den central.

I was housed at a prestigious address in Chelsea. Outside it looked rather grand. Inside, it was tatty and unpleasant. I had a giant hole in the wall where a boiler had been replaced. I had another hole in the living room due to an electric heater having been simply ripped out. These were not the main problems. The main problem was that it was dangerous.

In my first few days, a lovely Canadian neighbour came to see me to warn me about the residents on the top floor. Apparently, a young woman had been lured up there and was deeply damaged as a result. She had written to the Borough begging them not to house anyone vulnerable there. They chose me…traumatised by assault and rape, and having had pneumonia through the conditions in the temporary housing in which I was placed. I had a very sinking feeling but I decided to make my own mind up. The man above me seemed ok. He was training as a paramedic, so he HAD to be ok, didn’t he?

One day I heard a commotion outside my door. The paramedic and a woman were having sex right outside my front door. I found out that he had been in recovery from cocaine addiction and had just relapsed on crack.

Within a matter of weeks, the flat above had become a crack den. We had an endless presence of dealers and sex workers from the World’s End estate. My life became controlled by his crack cycle. He would do three days of no sleep at all, with loud parties and general mayhem. Then he would pass out unconscious for a few days. Then he would be up and out on a mission to score more drugs, and so it went on. I tried my best to understand. I even did a course on Substance Misuse with a charity in East London to help me understand. 

I reported everything to police. The chaos was such that we often had him arrested twice in one night. We no longer had to tell police which property we were in as they automatically knew.

His partner in crime was an alcoholic also on the top floor which I had renamed the ASBO Suite. He was vicious when drunk and a sexual predator. He was drunk all the time. He could tell when I was vulnerable, scared and sleep deprived. Just like the neighbour had warned I relapsed on alcohol and ended up in his flat. There I was held captive by this man. He kept me sleep-deprived by blaring loud music at me. Eventually he would pass out and I would make my escape. He subjected me to vile sexual assaults when I was in a dissociative state. I was completely detached, utterly frozen.

somewhere

I managed to get back on track again and started the process of taking legal action. Three of us were prepared to give evidence. This man realised I was fighting back and that is where retaliation started. He would wait until I was out, tamper with the pipes under his bath, then turn the taps to full on and wait for the results. I would come home to find water pouring into my bedroom causing huge damage and so much water that the lady underneath me was flooded as well.

I became a refugee. I went to stay with my parents. I stayed with AA friends in Willesden and Brixton. And all the time my Mum was dying of cancer. This was a nightmare time given that I already had PTSD. I missed Mum passing away as I had to return to London for two days while she was in the hospice as I had a distress call to say that I had been flooded out yet again.

The crack addict and by now thankfully, EX paramedic, became increasingly erratic. He was very angry. One night, I could hear what sounded like furniture being thrown around. I took refuge in the flat underneath me. Another neighbour phoned to tell me he was outside my door and appeared to be trying to kick my door in. I phoned the Housing Association’s ASB Director at 3am so that she could hear the noise and mayhem.

Finally his Mother, a barrister, arranged for him to go off for six months to rehab. I was ecstatic at the thought of actually being able to sleep in my own home. I also had enough legal knowledge to establish that technically an absence of this length of time would require permission from the landlord. He did not have that. I advised the Housing Association that they could use this as grounds for eviction on top of his spiralling rent arrears. This worked and he was evicted.

This was not the end of the problem. He returned once again with a real vengeance. The alcoholic would let him into the building. Then he recommenced retaliation by such treats as putting his own faeces in my mail box and through my letter box.

I finally broke down. I am amazed I did not do so sooner. I was admitted to the Mental Health unit where I eventually told staff of everything that I had gone through including being held against my will in the other flat. Police were involved after a Safeguarding alert and it was deemed unsafe for me to return to my own home. I ended up trapped on the ward for the best part of a year while they tried to find accommodation for me that had no KNOWN anti-social behaviour. The first attempt was to send me to a flat which turned out to be…next to a known crack den. I was moved out of there and eventually sent to where I am now. The Royal Borough apologised for getting it wrong again. Too late, I had already had another breakdown and wound up back in hospital. Eventually a new flat was found. I was assured all would be well. 

Out of the Frying Pan

This should by rights have been the end of having to struggle to have some level of quality of life. However, since then, I have endured a catalogue of appalling housing-related trauma.

Soon after moving in, I had a honeymoon period of a few days until that first weekend I discovered that directly opposite was anti-social chaotic gang-ridden nightclub run by a seedy individual resplendent in a faded velvet jacket encrusted with dandruff and a dirty ruffled shirt. The place was a known nuisance. I have since seen reams of correspondence going back years before my arrival but again this information was NOT taken into account in housing me there.

When they operated, my room would light up in bright red from the glaringly vulgar neon signage which would signal a sleepless night for me. I would stand on my balcony watching the patrons disgorge from the premises. Fights would break out. There were stabbings and, I heard recently, many drug deals involving Somalian gangs. It was Hell.

The Housing Officer used my mental health diagnosis to discount my complaints. Other tenants were too scared to take this man on. I was not. I started again recording everything. I was a Frequent Flier at the Out of Hours noise unit. Eventually, I was listened to. I attended a hearing at the Town Hall. I was the only witness apart from our local councillor. Again he used my mental health diagnosis to try to discount my evidence. However, it did not work. They listened to me.

To date, there is no longer a nightclub in that building. I have since moved to the back of the building and it is much quieter. I no longer stay up all night with ear defenders to protect me from the onslaught of noise, violence and red neon.

 

The (In)Convenient Labels

It is not the only time my mental health diagnosis has been used to silence me. I became aware of a lot of noise in the flat above me. I had also noticed a leak on my balcony from the flat above. I went upstairs and found a very vulnerable-looking Polish woman rather than the usual tenant – a young Afro-caribean man. I reported the leak. I advised the Housing Association that the person currently there was not the usual tenant. By this time I had become aware that the two Polish women were sex workers. One of them confided in me. She spoke Russian and would come down to borrow Russian poetry books. I felt very strongly that they were vulnerable. Rather than investigate this, Family Mosaic (now Peabody)’s Housing Officer decided to contact the official tenant. He apparently told him that “the mad woman in Flat 17 thinks you have Polish prostitutes in your flat”. He of course denied this. In one fell swoop my confidentiality had been breached and this man now had a major grudge at what he saw as being “grassed up”. I found out this Housing Officer then went round the whole building advising tenants that I was insane, and imagining sex workers. All of them had seen these women going out “to work” on a Friday and Saturday. I used to feel heartbroken for them. Despite the war paint and the revealing clothing, they looked incredibly fragile.  I found out later they were trafficked. 

The Housing Officer did take SOME action other than that. He was told by the official tenant that the Polish woman was his girlfriend. This was despite not knowing her name, and clearly managing to cross the barrier of an at least 20 years’ age gap and the fact that she only spoke Polish and Russian. I laughed out loud when he came forward with the “girlfriend” scenario. This led to my being reported for “racism” as it was implied that I did not believe a young black guy could be in a relationship with a much older Polish woman. 

Then retaliation started. This time it did not involve water. I already had a leak from above so he had to be more creative. He started making a succession of fake 999 calls to my flat. He always did so when I was out. He was not very bright so he used his own phone, and then would sit on the doorstep watching as police and paramedics showed up en masse.

Finally a HUGE policeman arrived to see me. Luck was on my side for once. He said “you’re fae Aberdeen!”. He was an ex Gordon Highlander and had been stationed at the barracks a few minutes’ walk from where I was brought up. He was a formidable man. All he said in addition to “your neighbour hates you”, was “I am away upstairs to treat him to some OLD-FASHIONED POLICING”. I am not sure what this involved, though I would have loved to have been there. What I did know was that that was the last bit of trouble from the junior gangster upstairs. He eventually apologised. He has been as good as gold every since. He even compliments me on my appearance, and once asked me out…err thanks but no thanks.

From Leaks to Mushrooms 

But meanwhile, the leak continued untreated by Family Mosaic. Once again I was deemed to be hallucinating. The Housing Officer who had replaced the one who was deployed elsewhere after the sex worker scandal, declared “there is no leak”. Impressed by his ability to see through walls, I nevertheless marched him out onto my balcony and parked him in front of the leak. “Oh”, he said. “Oh” indeed.

Still nothing happened. This was when the mushrooms started to appear courtesy of my “imaginary leak”. I kept reporting it. My regular #MushroomWatch pictures on Twitter were gaining quite a following. One night, I was sitting watching TV. I heard a massive crash that sounded like an explosion. Then there was a knock at my door. The ceiling in the bathroom of the flat underneath mine had collapsed. Just as well the tenant and not been on the toilet.

I saw that his flat was in an even worse state than mine. He had had water coming in for an extended period through the light fittings but Family Mosaic had of course not dealt with it. I called in the troops in the form of our amazing local Councillor Linda Wade. She arrived with her camera. By this time we could tell there were leaks everywhere. One woman upstairs had not been able to sleep in her bedroom for years. Another had Repetitive Strain Injury from daily emptying of buckets from water soaking through. While Linda and I were on a floor above inspecting further damage, by this time with the “there is no leak” Housing Officer present, another ceiling collapsed and what looked like human waste cascaded through.

Eventually this all cost way much more than the original problems and that includes human cost. I had had pneumonia-like symptoms requiring heavy duty antibiotics and steroids. This was all due to black mould. It was clear that Family Mosaic were either incapable of communicating, and/or unwilling to listen. It appeared they were particularly negligent in respect of people who did not have English as their first language. Vulnerable people were in a particularly dire position often feeling afraid to complain. And of course, there was me with my Diagnosis of Negation…

Power starts to shift

At this time, I was going through major positive changes. I had started to regain my voice. I was now working, had set up my own business and was a frequent speaker at conferences. One of these was NHS Confederation. I noticed one day a tweet from my landlord, showing off that they would be having a stand at the exhibition. I tweeted back: “I am delighted to hear this, I am the keynote speaker that day and they want me to refer to my Housing experiences….“

Suddenly it seemed I was no longer a mad woman hallucinating service failures here, there and everywhere from sex workers to leaky pipes. I was apparently now worth listening to and someone to be feared. Of course I did not use the platform to out them and in fact I congratulated them for their presence there. I was approached by a group of Family Mosaic staff after my speech and they apologised publicly. 

Of course this is about privilege as we should all have an equal voice irrespective of whether one has a public profile or not. However, if I have privilege and a level of protection not afforded to others, I see it as my duty to use it for the benefit of everyone.

I joined up with other dissatisfied tenants across Family Mosaic at this time. An enterprising resident in a Shared Ownership property outside our area had set up and anonymous Twitter account @ForFMTenants to enable people to report issues in confidence and hold them publicly accountable. I was amused to hear Brendan Sarsfield, the CEO (of Family Mosaic and now Peabody) assumed the culprit was me, and had summoned the Board clearly due to his fear of reputational damage. I confessed that it was not in fact me, but that had I thought of it I would not have hesitated.

From Cracked Mosaic to Merged Mayhem

Family Mosaic  merged with Peabody, a long-standing Housing Association founded by US Philanthropist George Peabody. I was encouraged by this. I believed that an organisation founded and allegedly still run on humanitarian principles could at the very least not be as bad as Family Mosaic. 

The Peabody Trust was intended to benefit ‘the poor and needy of this great metropolis, and to promote their comfort and happiness’. The trustees eventually decided that this was best achieved through ‘the construction of such improved dwellings for the poor as may combine in the utmost possible degree the essentials of healthfulness, comfort, social enjoyment, and economy’

peabody

 

methode_times_prod_web_bin_ee5119d8-bcb0-11e6-a53a-ca2ad7b229f9

These days the Philanthropic Model appears outdated and patronising. However, it could be argued, the firm humanitarian values on which it was based, have been thrown out with the bathwater. Currently, we still face a constant struggle to ensure our homes are habitable. “Healthfulness, comfort and social enjoyment” are conspicuous by their absence.

The overall impression I have of Peabody is lack of effective Leadership, communication, and general mayhem. 

George Peabody believed in working with chaos and still getting work done. Sadly this has not filtered down to the present day incumbents. 

peabody

In my flat, I have not had working heating since I moved in five years ago. Mine is one of the flats affected by water penetration. This is again causing damp, mould, and damage to paintwork and furniture. I have frequent respiratory problems. In addition, there is a long-standing infestation by black oriental cockroaches. They are not only deeply unpleasant, they are known to cause breathing difficulties.

Worst of all is that our lift, which was already breaking down on a frequent basis, has been permanently out of action since last Summer. We have a high level of vulnerability in our building due, among other things, to disability, mobility problems, heart conditions etc. When the lift was out of action previously, an older lady on an upper floor fell while struggling on the stairs. Residents including myself found her lying injured at the bottom of the stairs. I sat with her until the ambulance arrived. She was in extreme pain. She had broken her back and died in hospital. More recently, another tenant was found dead outside his flat. He had mental health difficulties and diabetes had caused one of his legs to be amputated. It appeared he was trying to get downstairs. I challenged Peabody on this and was advised that a full “risk assessment” had been done and NO mobility issues reported. Jack had one leg…

It would seem that once again, deep-rooted lack of humanity towards social housing residents is in play here in Kensington. In this Borough, we know what happens when this is taken to extremes

 

community13

 

 

 

 

 

 

 

 

Talking to a Brick Wall

Peabody’s inability to communicate either with tenants, their staff or contractors is legendary.

Worse however, is negative staff attitude. It is clear that the working culture in Peabody is toxic. Perhaps this is why some beleaguered Housing staff in need of a scapegoat choose to treat their customers with disdain. I am familiar with much of this in the NHS, where lack of resources, under staffing, uncertainty and workplace bullying can lead to people becoming disconnected from the values that made them go into a “caring” profession.

“Peabody have consistently run down their social housing stock. All repairs are completed without checks or inspections. The maintenance management for social housing is entirely inadequate. When challenged about this Peabody reacts with contempt.” Peabody Trust tenant.   https://shachome.files.wordpress.com/2020/01/sats-report-december-2019-final.pdf

I have had a Family Mosaic (now Peabody) Neighbourhood Manager (rebranded Housing Officer) express his anger that the likes of me, should “get” to live in Kensington whereas someone like him was forced to commute from East London. I have noted that tenants who are not British and who have English as a second language have a particularly hard time. I am more ready than most to understand the impact of toxic working cultures, I have direct experience, but is it EVER acceptable to advise an Iraqi tenant that if she doesn’t like it, she should go back where she came from?

So it would seem that stigma against social housing tenants comes not only from the likes of the Daily Mail but can be even more insidious at the level of the Housing providers themselves.

What needs to change?

The first thing that needs to change is the assumption that people living in social housing must by definition be incapable and unworthy of living in anything other than the Squalor Beveridge named as one of his Giant Evils. This is fueled in our times by the other Giant Evil of Ignorance manifesting itself in the scapegoating of the so-called “Benefit Scrounger”. As I have said, this seems to come both from outside and from inside the Social Housing providers themselves. 

Undoubtedly the Beveridge Report was revolutionary in its day but it nevertheless focused on delivery by the State to passive recipients rather than shifting power in order to enable shared solutions. It failed to recognize that there are strengths in people and communities if the right conditions are created for them to flourish.

Housing providers and policy makers need to concentrate less on “asset management” of bricks and mortar “stock” and more on the building and proper utilisation and valuing of “human assets”. A mindset shift is needed away from the deficit model that sees people like myself solely in terms of “needs” that are all but impossible to meet due to ever dwindling resources.

They need a clearer understanding of how people and communities, including those considered the most “vulnerable” can contribute to and indeed, lead on the design and running of services. We need to shift from paternalistic insistences on “compliance” and at best,  largely tokenistic consultation to genuine co-production – an “equal and reciprocal relationship between professionals, people using services, their families and their neighbours. ”

In a climate of stretched resources and mounting concern that the housing market is broken and failing residents, the concept of co-production is more important than ever. Put simply, tenants should have a meaningful role in the design and delivery of the homes they need. Landlords must acknowledge the skills, knowledge, experience, networks and resources that individuals and communities bring. There needs to be a focus on fostering equal relationships, where individuals, families, communities and service providers have a reciprocal relatiinship and where tenants are no longer “done to”. 

Screenshot (11)

 

“Co-production’ refers to a way of working whereby citizens and decision makers … work together to create a decision or service which works for them all. The approach is value driven and built on the principle that those who use a service are best placed to help design it”

Skills for Health, March 2013

“Co-production is a radical culture of trust, respect and valuing everyone to bring about a positive thriving change in a community”

Homeless link, March 2018

POST SCRIPT

Recently, Peabody sent letters out to 200 tenants claiming that all of them, including my entire household, had failed to allow contractors access to their flats to undertake fire safety checks. The tone was officious, and there were direct threats to force entry and change locks on communal and individual doors – in other words de facto eviction. Clearly no effort had been made to check the claim that all 200 households were guilty of this alleged crime. In fact there is a large amount of evidence that in our household, everyone made concerted efforts to communicate with the contractors to arrange the necessary appointments. 

I have been reflecting on this since these letters arrived marked URGENT in red. I believe they show what is wrong with the culture of Peabody and other traditional social landlords, which goes back to the “bricks and mortar” theory, and demonstrates a failure to recognise the importance of relationships and trust. This paternalistic model is at best based on “compliance” and no more, and if the recalcitrant children on the receiving end of the parent/child dynamic fail to comply, they will be punished. Control is to be achieved by fear. It is little wonder then, that tenants like myself who believe in collaboration and partnership-working, end up angry, disillusioned and disinclined to “obey” orders imposed from above. This is wasteful and dehumanising, and does not make the jobs of over-stretched Housing staff any easier. 

The key is NOT to erase the philanthropic values of Peabody and his ilk, but to retain the human aspects where we are viewed not as the needy, and the feckless. That means bringing the values of the philanthropists up to date so that they are suited to the modern world. Relationships based on mutual understanding and combining efforts to find shared solutions on both sides. 

 

Housing2

|

Life by someone else’s numbers

You are in Recovery, they told me when I last saw the Community Mental Health Team. This meant apparently that the only support I was going to be offered was access to a Work Adviser and even that never happened. Apparently at that session with a Psychiatrist and a Dual Diagnosis Worker I was not in need of any further help because, and I quote from the written report of the assessment, “she was fashionably dressed in a matching green top with neatly applied eye makeup”. Do they not GET after nearly two decades of using their services that I am able to put on a mask in even the most extremes of despair? How else would I manage to put one foot in front of the other?

mask

Less than a month later, I was admitted to hospital in a deeply suicidal state. I was “lucky” to have been admitted at all apparently as clearly I “had capacity” and therefore not a priority. I was about to be kicked out of A&E firmly intending to end my life after I had got my beloved cat Izzy to a safe place. If I had not bumped into a compassionate member of the psychiatric liaison team whom I trust on the way out of A&E, and told her my plans, I believe I would not be sitting here writing this blog.

I used to think I knew what Recovery meant. In the substance misuse world there are very many interpretations of this concept.

The National Council on Alcoholism and Drug Dependence in the US say this:

Essentially, recovery is a complex and dynamic process encompassing all the positive benefits to physical, mental and social health that can happen when people with an addiction to alcohol or drugs, or their family members, get the help they need.

The Substance Abuse and Mental Health Administration (SAMHSA) also in the US define it thus:

“A process of change through which an individual achieves abstinence and improved health, wellness and quality of life”

They expand this definition into 12 “Guiding Principles of Recovery”

There are many pathways to recovery.
Recovery is self-directed and empowering.
Recovery involves a personal recognition of the need for change and transformation.
Recovery is holistic.
Recovery has cultural dimensions.
Recovery exists on a continuum of improved health and wellness.
Recovery is supported by peers and allies.
Recovery emerges from hope and gratitude.
Recovery involves a process of healing and self-redefinition.
Recovery involves addressing discrimination and transcending shame and stigma.
Recovery involves (re)joining and (re)building a life in the community.
Recovery is a reality. It can, will, and does happen.

All pretty harmless stuff really but a lot of that is conspicuous by its absence in how Recovery is now viewed in Mental Health services here. I am happy to see my recovery from alcoholism as a process however. That way it guards against the complacency that could well set in if I suddenly get into my head that I am “recovered”. Alcoholism is a condition typified by denial.

And then the “model” was taken on in the mental health world. Initially, I was all for it. I was sick and tired of being railroaded into activities that professionals considered would be good for me. I was never ever going to enjoy playing bingo on wards even when they brought in cold KFC as a “treat” to go along with it. On discharge I was no way Jose, ever ever going to be into gardening for therapeutic purposes. In rehab I loathed with a vengeance being made to make a rag-rugged lavender cushion, and would far rather do my own art than paint by someone else’s numbers. This is my trouble. I have never painted within someone else’s numbers and cannot for the life of me stay within the lines….

putsidelines

This, it seemed to me, might truly allow me to define what my own sense of “quality of life” was. This was for me going to be having a safe and QUIET place to live and after that find ways to “recover” my rights to be an equal participant in society. Yes, I wanted to work but this would only be possible, as I discovered to my cost, if there was a stable foundation on which to build this form of self-actualisation.

Why do I say “to my cost”? Early after discharge from my first very long admission to a mental health ward I stumbled into a meeting of my local branch of Mind. It happened to be on the subject of employment and was addressed by Doctor Rachel Perkins, a leading proponent of the Recovery model and very much of the view that Recovery and Work are bound together. At this time, I was far from well. I could appear to have “capacity”. However, I was deeply traumatised by my experiences of workplace bullying and the total lack of support from my employer when on their watch, I descended into the whirlwind of PTSD and addiction. I had been a complete workaholic. I thought my job title was my entire identity. Work was a drug to me and ended up as destructive. I saw, and still struggle not to see, work as the only indicator of worth. Without it, I did not exist.

Dr Perkins was saying exactly what I wanted to hear. I pushed myself into service user involvement work and then a work placement with my mental health trust. However, I was going home every night to a totally chaotic house. I had been housed under a known crack den when what I needed was peace and safety. I had neither. I had to adapt to the addict above me’s crack cycle which meant he would be up for three days and nights, then pass out for three more days after which he would be off on a mission to get more drugs, and so it would go on. I was doing my placement in the local drug and alcohol service, in short working with people in the chaos of addiction then going home to try to survive in yet more chaos of addiction. Of course I became ill again. Of course it delayed my “recovery ” even more.

In fact for me, given the nature of my unbalanced relationship with work and my confusion of “work” with “worth” the ‘work as an outcome’ message rammed home by the Recoveristas was deeply damaging. Only now twenty years after diagnosis, do I finally realise that the past few months in which I have been reduced through physical illness on top of further work-related trauma, I have paradoxically been closer to “recovery” as defined in the above principles than I ever have.

The doctrine of Dr Perkins et al fails to recognise the importance of the base of the pyramid that is the Hierarchy of Needs. Propelled by the agenda of a government that sees the like of myself at best as “stock” or at worst as subhuman somehow wilfully avoiding “doing the right thing”, they went straight for “self-actualisation”as if this alone was enough. It makes me wonder how many of the leading proponent of the “work cure” have themselves experienced the devastation of having no safety from squalor, poverty and negation and the sheer impossibility of achieving “self actualisation” under these circumstances when life is reduced to mere survival and nothing more.

maslow

Housing – the missing link

I estimate that lack of safe housing delayed my recovery from a combination of post-traumatic stress disorder (PTSD) and related substance misuse by some fifteen years. It actually added layers of trauma. I was diagnosed after the death of my colleagues in the course of my job in international relations and in order to try to cope I self-medicated with alcohol. That in combination with an unsupportive working culture led to my retirement on ill-health grounds at the age of 32. I lost my home, as after sick pay came to an end I was unable to keep up mortgage payments.

I moved back in with my parents and with their support I appeared to be on the mend. I somehow succeeded in getting a job as Political Administrator to a Member of the European Parliament. Away from my family, I quickly disintegrated and starting on what became a dehumanising process in which what remained of my identity and my mental and physical health was shattered. Very soon I had no job, no home and was adrift in London. I managed somehow to get myself to my Borough Town Hall to declare myself homeless and they agreed to house me. I stepped that day onto a joyless merry-go-round that was to spin on for more than a decade.

Life for me became entirely about trying desperately to get help and find ways of getting my fragmented self safely across a sinkhole-ridden service landscape. My mental health and alcoholism were worsening and I became even more of a challenge to the system. I was too mad for Substance Misuse services, and too drunk for the Mental Health services. There seemed to be a chasm between Health and Social Services in Britain, with Housing seeming to exist in isolation on some other planet.

Over and over again, I appeared in hospital Accident and Emergency only to be patched up and packed off to another dingy room in some other bed and breakfast or hostel well away from where my support, such as it was, was situated. Every time I would be discharged back into these unsafe squalid places where my visible vulnerability led to me to be preyed upon leading to physical and sexual assault, and rape.

My response was to drink even more to cut myself off from my reality, and had I not done so I believe I would have taken my own life. The drinking would inevitably lead to yet another admission and a few days later another exit again back into oblivion.

I felt totally disconnected from the person I was before I became unwell, the person who ran international projects and was commended for her work in the Chernobyl zone. I knew she existed but was cryogenically suspended in another room in some other part of the building to which someone else with all the power had the key.

frozen

Turning points

I was eventually given a place in a supported housing project. For the first time in years I had a safe roof over my head. The organisation clearly understood the importance to their client group often battered into oblivion by mental health and substance misuse issues of an environment in which it might just be possible to regain some dignity and start to heal. I cried with joy that I actually had a kettle and a toaster. I recall my first night there. I was so unused to being in comfortable surroundings that I thought I might not be “allowed” to sit on my bed so I sat totally motionless on an armchair not quite believing I had the right to be there.

I felt devoid of any rights by this stage. I had been stripped down to nothing and re-labelled as “vulnerable”, “complex” and “hard to reach”. I absorbed and became what was written on my labels.

It was to be a long and hard process of pushing the rock up the hill from then on but at least the rock started coming to rest a little further up each time.

I recovered sufficiently to move on from Turning Point to a social housing tenancy. This brought with it a whole new range of problems. I was simply plonked in the nearest available space with no consideration for my mental health or precarious recovery from alcoholism in this case under a very well-known crack den. Under such conditions I stepped back again on the merry-go-round of relapse and hospital admissions during which every time “unsafe housing” was writ large on my notes. I have had seriously problems with the conditions in which I was expected to live. My place was so damp, I had mushrooms growing out of the ceiling causing me long-standing respiratory problems. I was subjected to extreme anti-social behaviour by neighbours to whom it had been divulged by a Housing Officer that I was “mental”.

It became so unsafe, after yet another relapse, I became trapped as a so-called “bed blocker” for just under a year at a cost per night of more than the Dorchester on an acute mental health ward. The police had deemed where I was living too dangerous. I could have told them that years before if I had ever been asked.

These days I finally have a home in which I can live safely.  It is far from perfect but I finally feel secure.

By rights, I could “recover” here. Healing does not seem like such an alien concept an in in fact I might even flourish. However….

DWP

Enter DWP Stage Left.

For whose Benefit?

These days the Recovery Model seems based a great deal on replacing terms with “positive” language. We are no longer subject to the mores of Mental Health Teams, they are Recovery or Wellbeing Teams now though in essence are exactly the same or indeed more difficult to access. We are told our labels to do not define us, that we are untapped resources, and that diagnoses must be cast by the wayside of the Yellow Brick Road to Recovery. We are taught to be resilient, regulate our emotions, and exercise radical acceptance even of the most unacceptable. We must be positive. We must be mindful. We must, we must, we must….

Buoyed up by all this positivity I now wake after a refreshing sleep in which I dreamt of unicorns and rainbows. Bluebirds lift my Egyptian cotton duvet from me and I rise in my lacy nightdress and get to my knees for my morning Mindfulness.

cinderella2

Then it happens….

There is a loud “THUNK” by the front door that can only mean one thing. Today’s post has contained a Benefits Form.

In one fell swoop all the fragile attempts at rebuilding a sense of worth crash to the ground.

For these forms it is necessary to clear away any vestige of positivity, and hope to God the professionals charged with providing the evidence you need are also able to make this shift. Then you have to describe in depth your worst days. I want to FORGET my worst days. I WANT to put them behind me but the system will NOT allow this. I hate to have to put in writing that I can’t manage to take care of my flat, and at times, I can’t summon the energy to have a wash. I HATE having to make sure I resist the urge to qualify any of it with something that might make me feel that bit better about myself.

And for the finale, there is the medical assessment itself. For that, you need to leave the mask behind. You MUST expose yourself in your raw and vulnerable reality to some under-qualified or unqualified stranger who has targets to make sure you are off their books for good. It is utterly humiliating, removes me from whatever sense of my own humanity I have been able to drag together, and it is designed to break people not build them up. I arrived at one with my Dual Diagnosis Worker. I was shaking with fear. The assessor commenced by barking “WHAT IS DUAL DIAGNOSIS?” and so I knew I was stuffed. The questions included a repeated demand to know why on earth I would want to leave my job in the House of Lords. He was genuinely incredulous. I had to tell him several times that it was not about whether I liked it there or not, it was the fact that I was too ill to make it out of bed at that time. He was fixated on whether I ate pot noodles. He wanted to know my preference of corner shops over supermarkets. He claimed to be a Doctor. I have no idea of what.

After this experience I felt so overwhelmed I howled like a wounded animal in the toilets of Balham Assessment Centre which has to be the grimmest venue they could find. Had the Dual Diagnosis Worker not been there, I may well have acted on my powerful impulse to end my life on the rail track.

vercliff

I firmly believe that left alone, I will gradually build myself up safely to make a return to work but it hangs on a knife-edge. Just one communication from the DWP has me fighting the impulse to start drinking to oblivion and punishing myself for the failure I have very clearly become. This process wrecks any prospect of real “Recovery” as I define it. It ends up costing way more as each time it causes me to relapse, and each time it falls to ever-dwindling services to help me glue the fragments together.

It is not about rebuilding. It not about recovery. It is about punishment, punishment from a system that assumes paid work is the only indicator of worth, the only indicator of one’s right to occupy a place in society.

At the time of writing, I am going through it all again this time due to the transfer of Disability Living Allowance to Personal Independence Payments. I was on an “indefinite” award of DLA which matters not one iota. I have been discharged from mental health services for no apparent reason so have no right to access supporting evidence from them. I am not sure my GP even knows who I am. Putting in my claim by phone was in itself soul-destroying – barked questions from what appeared to be some kind of automaton “Are you terminally ill meaning do you expect not to live for more than X months? Do you have Downs Syndrome? Do you have Dementia?” I sobbed all the way through it.

The reality is I may well not survive yet another round of this ritual humiliation. I feel battered and bruised by trying so hard to rebuild my life under this punitive system which is designed to foster hatred either from other towards myself as a “scrounger” or the self-loathing which comes from feeling as though my nose is being repeatedly shoved in the pile of excrement that I, in those moments, believe I have become.

mental-health

It is not easy to write this but this is the reality. Bodies like the Royal College of Psychiatrists need to hear this. They need to try to understand the realities of the gulf between the Land of Oz of Recovery, and the grim black and white reality so many of us face.

I know many doctors are burned out and when burnout happens, it is hard to access ones own humanity. I know as I have been there. It could be easy to fall into the trap therefore of joining in with the “scrounger” narrative around “fake patients” simply putting on an Oscar-winning performance to try to get something for nothing.

Have you have become so detached from your own Compassion, from the values that made you go into healthcare? Could I ask that before you judge someone before you who seems “well-presented” with “capacity”, and therefore you may consider,  likely a malingerer, why not pause for a second and contemplate the possibility that there is a person in pain and in need of help who is hiding for dear life behind a very well constructed mask without which they would simply dissolve on the floor.

If even then you still can’t see beyond your own biases, then think about the waste of resources as time and time again, people like myself end up so traumatised by the impact on top of poverty, of being graded and degraded that we end spinning out of control in the revolving door.

What do you do then? Do you sigh and write us off as “fakers” draining your energies and precious resources, or do you dare to look behind the mask and your own assumptions…? Why do we not all risk being our authentic selves and then we might understand the pressures you are under, and you will perhaps realise that when we appear in front of you, we may well be well-dressed and articulate, but may just be a person in pain who needs your help. 

.behind_the_mask_by_violins_and_violence-d3cnftx

First do no harm.

 

With thanks to Dr Wendy Burn, President of the Royal College of Psychiatrists for helping me find the motivation to write this blog. 

The section on housing is adapted from my chapter in a recently published book https://www.amazon.co.uk/Social-policy-first-Peter-Beresford/dp/1447332369. Thanks to Peter Beresford and Sarah Carr for inviting me to write about my Housing experiences. 

bookhousing