A Cycle Of Deprivation: The Welfare Reform Bill and Me.
I came to disability and welfare quite late in life. Although I had lived with depression since I was a child it was not until my late 40s that I first considered myself to be "impaired" and that was for a different reason. It was seven years later and I was in my mid-50s when I was forced to come to terms with the fact that I was now a person with disability. Is that confusing? Indulge me for a moment while I explain how I arrived at the point that sees me writing about this matter.
I was born seven years after The Beveridge Report laid the foundations of the Welfare State and 18 months after the welfare state "went live" in mid-1948. This meant that my healthcare was free, that I would be educated for a longer period than those who were born four years before me, and that, following the breakdown of my parents marriage and our subsequent eviction from the RAF married quarters we had lived in, my mother, my sister's, and I returned to the town where I had been born to a newly built council house.
When my sister and my brother were born (1946 and 1948 respectively) it was in a hospital owned by the local authority and my parents had to meet some of the costs. By the time I was born in December 1949 that same hospital had been purchased by the Government for the new National Health Service and it was cost free. This was just as well because my brother died in the same hospital two weeks after I was born at just around the time that my mother was being told that I had a severe stomach complaint which made it highly unlikely that I would live. I required an operation that very few "babies" survived due to their lack of physical resources.
I guess it was fate that someone came up with the medicinal "cure" right at that time. It could have been more than fate because the medicinal cure had such limited success that by the time I returned to manage the social work team in that same hospital 43 years later the operation was once again the preferred treatment and the mortality rate was still quite high.
The Welfare State did not do much in the way of financial handouts during its early years and so my mother my sister's and I lived in poverty because most of Mums wages from packing biscuits into tins were consumed by our rent and her bus fares to and from work. (If she was still alive I think my mum would like me to mention here that she had been a schoolteacher in India where she was born but her Indian teaching qualification was not recognised in the UK at that time).
For many reasons I spent most of my childhood believing I must be some sort of Alien. Emerging each day from our scruffy house in my scruffy clothes, and I was aware, because I was constantly being reminded, that I had nearly died. I was also very aware that my brother died as I was born and privately I wondered if he had to go in order to make way for me. My “childhood” was quickly over as I shared Mum’s anxieties about where our next meal would come from, there was no time in the life of an Alien for the luxury of childish thoughts. Within my own home I assumed the role of court jester bringing laughter to mum and my sisters with comedic actions and language while, when away from them, I was intense to a degree that confused my school friends.
And so it was that by the age of 11 I had learned very well the skill of concealing my innermost thoughts behind a veneer of humour. I had also learnt to put an invisible shield between myself and the taunts from others regarding my appearance, my ethnicity, and my parentage, (it was very unusual back then for a father to be absent for any reason other than death and so the word "bastard" was heard fairly often when my sisters and/or I was out and about.
The intensity, the veneer of happiness, and, the invisible shield all stood me in good stead as I entered the adult world and began to acquire the social skills required in that environment. Despite my depressive episodes I am one of the few people I know who can say that I truly have achieved all of my ambitions, this is because after a very bad experience with colleagues after returning to a workplace following an incapacitating bout of depression, I vowed I would never put myself through that experience again. So, after leaving school at 15 because my family needed a wage, I spent my late teens making and mending things, I spent my twenties selling things, I spent my thirties computing things, I spent my forties "Social Working, and I spent my late forties and my fifties (up to the point I ceased work) Teaching.
My disability career was running a parallel course, it meandered something like this. From the age of about 10 I have been resisting the attempts of my depression to totally consume me. I had my first prolonged episode of depression when I was 18, luckily it occurred while (and perhaps because) I was recovering from a knee operation following a serious football injury. I was able to pass off my low mood saying it was because I feared I would never play football again while, the truth was that I was combating endless thoughts about ending my own life.
These deep depressions have occurred approximately every 5 to 7 years of my life and, with the exception of that first one, are preceded by a period of hyper-activity. In 2005, following the most severe and prolonged episode I had ever experienced up until that point, I was given a diagnosis of bipolar disorder.
The point I'm trying to illustrate here in the context of the Welfare Reform Bill is that apart from one period of six weeks and one other of three months my strong "working-class" work ethic motivated me to take the minimum time away from work in order to remain employed. As I was employed in a senior management role when each of those episodes occurred my salary was paid by my employer throughout my time off work.
That three month episode came at the end of a period when I had spent three years overseeing the computerisation of the company I was working for, and it came four years after I became involved in voluntary work near the end of my twenties. The more I became involved with the computerisation the less I was involved with people in my professional life and I began increasing the amount of voluntary work I did to compensate for this. After the breakdown, and with the help of the staff at a mental health residential crisis centre where I stayed for six weeks, I realised that I could not carry on doing what amounted to two full-time jobs. A decided that as my main source of "job satisfaction" came from the voluntary work I had to find a way of becoming a professional social worker.
The steps I took to convince potential employers that I was over the effects of the breakdown and to obtain a relevant qualification are too lengthy to relate here. Suffice it to say that it was 10 years later and I was a children and families social work area manager when I became mobility impaired.
Following my legs becoming numb on a couple of occasions and the onset of chronic back pain and sciatica I was told that my spine was beginning to crumble away from the bottom upwards. Two discs had "burst" and arthritis was moving into the space that was left. Various nerves were being compressed because of this.
There was no real explanation. One specialist believed that a poor diet as a child had left me with a condition akin to osteoporosis. Others felt there were signs of twisting injuries and impact injuries that I must have collected over time. All agreed that I should give up working immediately because there was a high risk that some of the debris left behind, or the next bursting disc, would compress my spinal-cord causing paralysis. I was 47 at the time and they said I had the spine of a 90-year-old. They said that if I was 90 years old they would operate. The operation would allow them to do things to relieve the pain but carried a very high risk of causing paralysis which, they said, wouldn't have mattered if I was 90 but they felt I was too young to take that risk at that time.
I asked for the worse prognosis, they said I would be paralysed below my waist. I asked If I would avoid becoming paralysed If I sat still from that day until I died, they said not necessarily. They told me coughing or laughing while I was in the wrong position could cause paralysis. I asked if I would definitely be paralysed if I carried on working, they said they could not say that would definitely happen, it would all depend where I was and what I was doing at the time the next disc burst.
Occupational health said I could not return to my job with social services because I was in a role where there was regular contact with people who might become violent. I took my lump sum and my pension and began to look at alternatives.
(Once again, because of the role I was in, my salary was paid throughout the period described immediately above. I used my pension and my lump sum to finance what I describe below. It is important to remember here that up to this point I still had not applied for any benefit of any kind. During the period when there was a strong possibility that I would be unable to do work of any kind I contacted National Insurance regarding my state pension contributions. I was told that I had already paid in sufficient funds to guarantee receiving a full state pension when I am 65).
I wondered about jobs I could do which I would be able to continue doing if I were to need a wheelchair to move myself around, the two skills that I had obtained during my time in social work, and in voluntary work before that, were skills at counselling and at training social care staff. So at that point with the aid of painkillers (which to be honest aren't very effective against nerve pain) I began my first adult education teaching qualification and counselling qualification. After a few months it was obvious that the counselling qualification would probably never be used because I couldn't sit in the same position for more than about 5 min and so I put all my energy into obtaining the teaching qualification. I'm very glad I did that because although it was only six years my career as an adult education lecturer was one of the most fulfilling I have undertaken. What began as a part-time post while I tested my physical limitations soon became a full-time one and I moved from the Oxfordshire countryside into London to cut out the commuting which was often the most painful part of my day.
It was halfway through my teaching years that I first applied for a benefit. When my 10-year-old car needed replacing I applied for a DLA mobility grant. I was successful and I also obtained lower rate DLA to pay a cleaner for a couple of afternoons each week to perform the cleaning tasks that I am unable to do for myself.
Another disc burst in 2002. On that occasion a minor surgical procedure, a steroid injection into my epidural cavity, was used to relieve some of the pain and I was able to return to work after a couple of months.
That was the way it stayed for the next three years. Me, too absorbed in my career to even consider the fact that I might become depressed again and rising to the challenge of continually finding new and different ways to manage my pain. My training in those early years where I taught myself not to worry about being scruffy, weird, or a bastard, stood me in good stead and it didn't bother me one bit that I now walked like Donald Duck on a bad day.
And then it came, during the summer holidays, that morning when I woke and it was the other Brian who was sitting there. Severely depressed, I was unable to decide whether or how to get out of bed, confidence gone, happy memories replaced by nagging guilt. Hours blurred into days of sitting unwashed, unfed, uncombed, undressed, until my ex-wife, who is still my best friend, arrived for a visit and found me. I had forgotten she was coming. I hid the letter I had written to my cleaner apologising to her for my decision that she should be the one to find my dead body because she was not emotionally attached to me.
And that was it, having lived with me through two other periods of acute depression my friend instantly knew what was going on and made the necessary telephone calls to the medics. Within two days I was sitting in a meeting at the psychiatric day hospital where I was offered the choice, (if that's what it was), of either attending the day hospital every day or of being sectioned (psychiatric jargon for compulsory admittance to a residential psychiatric hospital). I didn't realise at the time but that was the day on which I became disabled.
Although I was profoundly depressed I began attending the day hospital believing that, although it didn't feel like it, at some point I would emerge from the hospital a fully functioning person once more. This time it wasn't to be.
With the new hospital came the new diagnosis and with that came new antidepressant medication.
After each of my previous severe bouts of depression I had eventually reached the point where I had weaned myself off of whatever medication I was on. This wasn't really very hard to do because most psychiatric medicines are of limited use or they come with a cocktail of side-effects which are in themselves a massive incentive to get off the drugs. The first new medication that was tried made things worse instead of better, (not an unusual occurrence with psychiatric medicine), but the next thing they tried was quickly in control of my suicidal thoughts and the side-effects were minimal.
The new medication has proved very successful at flattening down the emotional effect of the most destructive of my thoughts but, possibly because I lost the love of my life during that period, my mind appears to have lost the ability to lift itself totally clear of the cloud of confusion that engulfs me.
I now live with a similar prognosis from both my psychiatrist and my back specialist who each state that everyone with chronic back pain sufferers a degree of depression but that since my depression is acute they believe, (and were proved correct when I undertook some voluntary work a couple of years ago) that these two chronic conditions impact upon each other with such force that it is inevitable that if I subject myself to high degrees of either emotional or physical stress that I will be setting myself up for a life spent permanently bouncing between stronger psychiatric medication and unsafe levels of painkillers. And that is my life now.
So what does the Welfare Reform Bill mean for me?
1: without my motorbility car I would not be able to leave my home because I have been medically advised that it is highly dangerous for me to travel on public transport. The nearest shop is 200 yards away. On a good day I can walk there in 15 min but I am not able to carry anything back that I cannot put into my pocket.
2: the lower rate of DLA ceased to be adequate to pay a cleaner for more than one hour per week about two years ago. That one hour is basically used by my cleaner to ensure my home is hygienic. If I lose my lower rate DLA allowance there are jobs, mostly concerned with hygiene, that simply will not get done.
3: I will be called for Work Capability Assessment at some point in the future and following that assessment regardless of the fact that both my orthopaedic and my psychiatric consultants say I must not work I could be assessed as being capable of work. If that happens my benefit will reduce and I will lose my home. If I have not gained employment within 12 months I may lose my benefits all together.
4: I am 61 years old. In four years, when I reach retirement age, it is possible that I will lose my motorbility car (see 1).
5: I paid National Insurance Contributions for 40 years. For many of those years I worked when others with psychiatric and physical problems the same as mine might not have done so. I was told after 32 years that I had paid sufficient contributions to be entitled to the full state pension. Now, that might not be the case.
I used to teach my students that sociologists speak of a “cycle of deprivation”. I was born into poverty and spent my childhood living in poverty. Throughout my adult life I have worked hard and honestly and although there have been many occasions on which I could have extracted money from the public purse I did not do so. If the Welfare Reform Bill goes through it is almost certain that having risen from underclass through working class to middle-class, that I will spend the last years of my life back in the underclass and living in poverty. That is the cycle of deprevation.
Broken Brian
