I am a cliché
For the past twenty-five years I have been diagnosed with depression. Where this immeasurable 'illness' originated from I'm not exactly sure, although I have my suspicions. From birth until I was the age of two I was in the care of the Social Services, since then I have continued to be someone's patient, client, member or caseload. I have progressed through the socio-medico ranks from a child to a teenager, and now into my adulthood. During this time I have been 'treated' by an array of health-care professionals, each of whom has tried to assist me with my problems in life. But let's not beat about the bush, what this means to you, the socially well adjusted, is that I am mentally ill, and, as I cannot cope with daily life, I need medical help. Or do I?
Doubtless there are those among you who would not hesitate to administer a regimen of tablets to control my ailments, for is drug therapy not the old revolutionary of medicine, has it not swept aside many of our psychological and physiological illnesses? What then of other treatments, counselling or group therapy for example? I have tried these treatments. For two years I dully confessed all my deepest, darkest fears to a consultant psychiatrist. While he tried to stay awake, I tried to explain how I felt. During one session, when I was about to burst and tell all, the door was suddenly thrown wide-open and in walked a cleaner with an industrial sized floor buffer. I coped no better in group therapy, where often the group would hijack the exercise, with its many personalities all struggling for equal attention and understanding. As for tablets, I have a long history of over-dosing, and when finally allowed/given/trusted with tablets, these produced side-effects so similar in nature to the effects of my depression that it was a waste of time taking them. At least the depression didn't bring impotency and potential addiction.
Oh, I forgot to mention, I am now living my life (my choice) free of any mental health intervention or treatment. Although I still often feel depressed, I feel better in my self for being able to decide what I need and want for David. Besides, diagnoses of stress, depression, anxiety, and the ominously titled 'personality disorder', hold little meaning within wider general society. Or do they? And before you reach for the phone, don't worry, I don't have an arsenal of weaponry under my bed, nor do I walk the streets with a machete concealed about my person. Neither do I hear voices, except when I'm listening to the radio or television. I don't wear my deceased mother's old clothes, how terrifying that thought is, and I don't have hundreds of air fresheners dangling from my ceiling. And finally, I don't own a hockey mask. I'm not schizophrenic, neither am I schizoid, and I don't have delusions of grandeur. But if I told you my friends are and do, what would you think? Would it change your perception of them and me, of whom 'we' the mentally ill are? In fact, I'm not even ill.
So what am I meant to do each week as an alternative to receiving these medical appointments and services, some of which I feel relied upon me far more than I ever could on them. And how can I justify to you, the tax-payer and provider of my compensatory £85.00 per week incapacity benefit, that I am worth the effort, let alone the cash. I'm 'fortunate' that I don't have to justify myself to you, that the money is a statutory payment. This means the government, because I cannot work due to my incapacity, by law has to support me. There are also few expectations made of me. I could, if I choose, do nothing. I could in effect, as I have done in the past, wallow in my bed, half-anaesthetised by the bleary discord of day-time television. Or walk a thousand hours of library floors, shopping centres, and patron the cheap cafés, where as long as one stays 'topped up' one can sit all day. Inasmuch as these solitary pursuits, and I am a solitary person, occupy one's time, I have felt enough loneliness and isolation when depressed.
I do attend a centre; I can hear the sympathetic acknowledgement that I'm not completely cast aside. I had little choice; it was the centre or dreaded day-care. When I heard them suggest a day-care centre, I thought, "god things are really desperate". So for a couple of days a week I attend the centre. It is, incidentally, National Health Service backed, but we enjoy our own autonomy. Most of 'us' already know one another from the various support groups, organisations, and hospitals we've attended. 'We're' the remnants of the health service, and as clichéd as it sounds, many members have been in the system all their lives, or at least a large part of it. Every scenario, story, medication and illness - real or imagined - is represented by the experiences of the centre's membership. We are, I guess, a highly concentrated cross-section of the reality of mental illness. Whatever - it's for people like me.
My friend Jackie has been at the centre for nine years. She's cheerful, intelligent and a self motivated young woman. We both know it's difficult dealing with life's demands. Apart from the past and 'the illness', which haunt us in equal measure, there's the constant worry of poverty. It's not easy living on state-handouts. I could get more money from a higher benefit, but can't be bothered being put through any more medical examinations and endless questionnaire forms asking me if I'm pregnant or if I can lift a 2lb bag of sugar. No, I make do with what I have: I have to. Once the rent and council tax, electricity and food are paid for, I have next to nothing to live on. Apart from the poverty, being on incapacity benefit is just another negative social stigma to attach to our lists. In fact, other than the money there's little benefit to being on benefit.
So what does the taxpayer get for all their hard-earned money? Not that it ever crosses their minds that they can work, earn a living, and so provide themselves with a life. Well... they get people like myself, Jackie, and Gavin and the thousands of others in similar circumstances to our own. What do we get for the money? In Gavin's case, an abusive and alcoholic step-father, and a physical attack as a teenager which left him with permanent psychological damage. The rest, the real bad stuff, he's asked me not to write. Now that's real value for money.
I know I can't be the only person stuck in this rut. Trapped within an identity that medical science defines me to be, and yet equally ensnared by the processes of a benefits bureaucracy that can't decide if its true ideals are medical, social or political - or all three or none of them. Yet, this identity is not one I have created. Nor are my mentally ill attributes qualifications I would wish for anyone, least myself, to possess. And one would think that in receiving welfare benefits this would be the end of my problems, but it's just the start.
All Jackie and I (and many people I have spoken with) want to do is to keep moving on with our lives. Yet, until only recently, we were not allowed to study full-time due to receiving benefits. Because Jackie (like myself) can't gain the necessary qualifications, and has a poor work record owing to her long periods of illness, few employers are likely to employ her at the level she and I are capable of and once held. It seems so pointless that we were not allowed, even for therapeutic reasons, to study full-time and realise our potential. And this greatly illustrates the inconsistency in attitudes towards people with mental health problems, and that for some it's a choice between day-care for example, or a course at university. Likewise, and despite my academic ability, I was forced to spend four years (part-time) as opposed to everyone else's single year in getting into university. Maybe it was just as well that I became ill again, early on in my first semester, as I would not have had the energy to study for another eight or more years for this degree.
Yes, I know the old adage that if one can study full-time, one can work full-time, but for whatever reasons 'we' can't. People like Jackie, Pamela, Gavin and myself do all the part-time courses we can, then grind to an undignified halt. If one does manage to escape returning to 'telly land' then one might be fortunate enough to end up at the centre. The alternatives are day-care or out patients and an endless trickle of support groups, drop-in, and community centres. Still, it's better than nothing isn't it? Isn't it?
As I'm in receipt of welfare benefit due to my incapacity to work, I fare equally as badly with the compulsory medical questionnaire forms and medical examinations imposed on me by the Department of Works and Pensions (DWP) - formally the Department of Social Security - to verify my inability to work. Whether it's Disability Living Allowance (DLA), Incapacity Benefit or simply claiming tax credits, if one can't work due to illness, one's tested.
As nearly everyone at the centre is receiving some type of benefit, news travels fast. The letter containing the medical questionnaire looks innocent enough, it's worded: "We require some more information to assess your entitlement to benefit." The cover letter comes across as a 'help us to help you', but it's really the first stage in a process which will lead to a medical examination and 'possible' removal of one's benefit entitlement. Simply replying, which you have to do, starts their process.
Every claimant who is then assessed as having a 'mild' to 'moderate' disability, whether physical or psychological (mental) or both, will be called to attend a medical. When one considers that the DWP's Decision-Maker considers severe disabilities to be, "tetraplegic (paralysis of all four limbs), in a persistent vegetative state, terminally ill, has dementia, is blind, is severely mentally impaired or mental state severely restricted or learning disabled", one can see the direction this process is taking. This is irrespective of any personal circumstances one's managed to squeeze into the five-inch boxes of the questionnaire. Moreover, it's difficult, nearly impossible, responding to a questionnaire (the precursor to the medical) and to realistically describe the effects of one's illness day to day while wondering whom these improbable questions are truly aimed at.
At the medical one has between twenty and forty minutes to be 'examined'. It's usually towards the end of the medical that it dawns on the individual that what they've said, their mannerism, and what the Benefits Agency Medical Services doctor thinks of them are the main factors deciding if they will pass the medical and score more than fifteen points - or fail and lose their benefit entitlement. It's at this point most people realise, too late, what's actually going on and what's really at stake.
One can, after the fact, appreciate how easily the questionnaire and medical examination constructs its legitimacy against the individual, and how much its premise can be used bureaucratically, as opposed for any real medical intention. Yet it's not just its design which one should criticise - which takes no account whatsoever of the individual - but its intention. It is simply a bureaucratic tool. No wonder we all nickname the place where we go for the medical 'Lourdes'. One goes in ill and comes out cured. Rightly so, the medical does net the odd fraudulent claim. For the rest, the vast majority, it's an unnecessary and often traumatic intrusion into our personal and private lives. It takes away even one's right to be ill. While being so obviously politically induced, ethically, it seriously questions the role of the medical profession which is charged with our care. And what of the government which has continued to use these measures since 1995, what note does it send to the disabled community?1
It's such a mixed message, 'yes we value you, but we don't trust you'. Yet fear, mistrust and discrimination are historically the social hallmarks of the mentally ill, those with mental health problems, as we're now labelled. Most of the folk who use the centre are everyday people. Yes, some are like me and have a case-history files thick, others haven't. We live our lives as best we can, being both accommodating and aware to our situation. Sometimes I think that the illness is the least intrusive and it's everything else that produces the real dysfunction in our lives. It's even more ironic that, rather than the exception many of us at the centre hold academic and professional qualifications. There's even two members I know who have Master of Arts degrees, one of which is in sociology. I have qualifications in the Arts and Social Sciences. So much for the social-norm of deranged lunatics.
Yet we're nearly disregarded by society, denied opportunities, discriminated against, purely because we're diagnosed with a mental illness, and received with all the misgivings such a term cogitates. I am different to you, but my difference is not in my diagnosis. Possibly due to my own new-found sense of self-awareness, I've noticed there are several centre members who are also entangled within the standard perceptual definition of mental ill-health. When looking into each past, there is often, as with Gavin, other environmental forces and social factors shaping their lives. And I can't help wondering if this is why they too have become lost, like me, within the [psychiatric] mental health system for so long.
As I say, I'm not ill, I'm hurt. The services that could help us, despite what we are told, are not there. Those that are, are under funded, under staffed and over prescribed. I waited fourteen months for my counselling-psychology appointment and nearly sixteen months for a place at the centre. It's hardly crises intervention; that's still left to the accident and emergency departments. Yes we need assistance, I don't deny this, but it's got to be more than waiting lists and medication. And certainly not bullying by the Department of Works and Pensions.
There's a real wind of change approaching, and I for one am extremely sceptical. The mutation in name from Department of Social Security to Department of Works and Pensions is not the only clue. Could it be that the questionnaire and medical are simply being used to justify the removal of one's entitlement to welfare benefit? Because with one in five working aged adults possessing a disability, these 'medical tests' are going to get a lot tougher.
The focus is obvious... work. To get the 'disabled', as the government refers to us, back or into work. Indeed, therapeutic work has, since April 2003, been replaced by permitted work. There's more than a mere suggestion that the emphasis has shifted from therapy to work. Those individuals that cannot work due to physical or mental disability/incapacitation, and whom rely on Incapacity or DLA benefit as their sole means of income, and who can't satisfy the DWP's criteria, they're going to have real problems. But it's not simply about economics and the capacity of the workforce... is it? Least of all it's definitely not to be found within the smokescreen of helping the disabled because there are many other practical ways to do this. So what is it all about, these so-called questionnaires and medical examinations? It's about money. If only to deny a higher rate, or reduce an existing rate by one level; in removing entitlement to benefit the savings to the government is in the tens of millions of pounds.
There's currently much being said as regards the changing face of mental health policies and its associated provisions, especially with the implementation of new legislation in the form of the Mental Health (Care and Treatment) (Scotland) Act 2003. People with mental health issues, nearly one in ten of the UK population, are supposedly better informed, better protected and better off. However, I see an all too familiar face, with a tired expression showing discrimination, stigmatisation, poverty and isolation. "Behind every disability there's a person" we're told. If only the DWP believed their own propaganda. Or in the words of Susan, a centre member, "Just how's does someone get out of this f..king loop?"
1. From April 1995 Sickness Benefit and Invalidity Benefit were replaced by Incapacity Benefit. A new medical assessment of incapacity for work called the all work test was introduced with Incapacity Benefit. The All work test has now been renamed the Personal Capability Assessment.
Anderson, D. & Mullen, P. (1998) 'Faking It, The Sentimentalisation of Modern Society, The idea of a fake society', The Social Affairs Unit Publications.
Department for Work and Pensions. Notes about Incapacity Benefit IB40 - 2002.
Goffman Erving, 'Stigma, Notes on the Management of the Spoiled Identity', Penguin Books (1990).
The Citizens Advice Scotland 2001, 'Statutory Sick Pay & Incapacity Benefit', JS (editor).
Timmins Nicholas, 'The Five Giants, A Biography of the Welfare State', Harper Collins Publishing (1995).
Welfare Rights Training, 'Incapacity Benefit & The All Work Test'.