A social framework

By Jana Kralova
University of Bath

The blog was first published on The Conversation, 29 June 2016

Every year, over 50m people in the world will die. Old age, disease, war and starvation all contribute to that number, and scientists, doctors and charities do their best to bring the figure down.

But there is no statistic which accurately measures the number of humans facing social death. The “socially dead” are an increasing section of the global population who are effectively dead. Their hearts still beat, their lungs still breathe, so technically, and physically, they are still alive. But this isn’t living as such – it is mere existence.

These are the people who have died before they’re physically dead. Physical death, the degradation and eventual cessation of your ability to function as a body, comes later. Social death is the degradation and eventual cessation of your ability to function as a social being. It happens when you are set apart from the rest of humanity.

Social Death: Image courtesy of Jana Kralova

It happens when your legal protection and autonomy is profoundly impaired and you have almost no way of defending yourself. Your sense of belonging to a group, culture or place fades and eventually disappears under the pressure of your circumstances, while your roles in life, such as those associated with employment, family and community, are also broken.

Your inter-generational relationships along with your spiritual faith and hope diminish while your physical condition deteriorates. Most importantly, you have lost all meaningful social relationships and are considered valueless in the eyes of society. It is a reality faced by many experiencing profound poverty, chronic illness, homelessness, advanced dementia and forced migration. And by its very nature, it is a reality which is widely ignored.

Specialist researchers have charted the changing profile of social death and its diagnosis in, for example, those imprisoned in solitary confinement, people forced to leave their homeland as refugees and individuals with incurable infectious diseases who are treated as social outcasts. It affects large groups whose communities have been destroyed by natural disasters, or targeted by state-sponsored violence, and whose security has been reduced by prevailing political ideology.

So what should we do about the socially dead?

First, we must establish a formal means of recognising them, a task which presents immediate difficulties. Conducting research on those considered socially dead, although much needed, is ethically and practically challenging. By their nature, these people have little legal recourse and autonomy, and so must be safeguarded from exploitation whilst simultaneously being studied.

The principal problem with recognising the socially dead is asking the right question. “How dead is this person?” sounds like a ludicrous question. The response will be: “Is this person dead or not?” It will not lie upon a scale. It will not allow for nuance. As such, how can it possibly reflect the nuances of a person’s lived experience?

To address this, I would argue that social death is similar, conceptually, to a more accessible term: “well-being”. This encapsulates all aspects of a person’s quality of life – including both external and internal factors, such as mental health or social class – but critically, these factors have different levels of severity. They can be placed on the scale. It is possible, therefore, to speak of a negative counterpart to well-being, namely “ill-being”.

With this approach, we could explore social death quantitatively: to consider an individual (or group) not as being either “dead or not dead” but as existing on a scale of “more to less dead”. If a robust framework exists within which individuals or groups may be considered more at risk of social death, then practical steps may be taken to address this, such as securing funding and an international consensus. Some steps have been taken in this direction already.

The late philosopher Claudia Card argued for the inclusion of social death in the UN definition of genocide and the creation of a rigorous legal framework around the term. Extending the legal definition in this manner would, for instance, reappraise systematic acts of rape in war – such as the “Brana Plan” of ethnic cleansing in Bosnia – as explicitly genocidal.

Part of the Brana Plan – orchestrated by the Yugoslav People’s Army – was to forcibly impregnate female Bosnian Muslims, with the intent that their wider community would disintegrate. Formal recognition of these acts as genocide would strengthen legal sanctions against perpetrators, while confronting a historic wrong.

A similar response to the plight of those who find themselves in the most intolerable circumstances could avoid future injustices and crimes against humanity. We already formally diagnose those with illnesses of the body to prevent physical death. It is time we put more effort into recognising the symptoms of ill-being – so we can prevent social death, too.

 

Facing the future alone

By Liz Lloyd
University of Bristol

Simone de Beauvoir once said:

‘Nothing should be more expected than old age: nothing is more unforeseen’.

This encapsulates perfectly the unforeseen nature of ill health and decline prior to death, which for the vast majority of us occurs in old age. Researchers often find that older people are reluctant to engage with the topic of death or at least, it requires a particularly engaging researcher and carefully crafted research tools to generate in-depth responses.

Widowhood has usually been researched from the perspective of a bereaved person after a death has occurred. Examples include accounts of the time around the death, examinations of widows’ resilience and coping strategies as well as their level of satisfaction with the circumstances in which their partner died (see for example the work of Kate-Mary Bennett and Laura Soulsby at Liverpool University).  Recently I have been researching literature on the giving and receiving of care between older people and linking this to the question of impending widowhood (understood in its broadest sense as the loss of a partner or other person equally close). This has inevitably raised a question about anticipation of widowhood, either because the individual who is cared for is on a trajectory towards death or because the carer is anxious about who will provide care if they die first.

Image via http://www.md-health.com/Early-Signs-of-Dementia.html

Examining how older people with health problems look to the future was one of the aims of a recent research project at the University of Bristol. The Maintaining Dignity in Later Life project was not particularly focused on couples, but as there were 18 married/cohabiting/civil-partnered participants out of a total group of 34 questions arose about the particular circumstances they experienced.

In one interview that I conducted with a couple in their eighties – we’ll call them George and Pat – the following exchange came up:

Liz: ‘So, looking to the future, have you thought about where you would go to get more help or support?’

George: ‘Well if something should happen to either of us, I suppose we should have to have a nurse or something’

Pat: ‘When the time comes, it’ll come and that’s all there is to it’

This wasn’t the first time that I have encountered the view that Pat expressed.  ‘Living day to day’ is a common response and it’s not really surprising.  Not spending your time thinking about the future can be a protection against the growing realisation of the shortness of time left. In this interview, the phrase that continued to circulate in my mind was George’s:  ‘If something should happen to either of us’: If not when.

Widowhood might be understood as one among the many fears about the future and about death. Facing the future alone after years of a relationship is be painful to contemplate. My parents used to have a play argument: ‘I’m going first;’  ‘No I’m going first’.  For them, the prospect of death was buffered by a strong belief in an eternity in heaven, yet neither wanted to face the prospect of widowhood in their remaining time on earth.

Caring responsibilities and the need for care can force an individual to think ahead and plan for the future. We know that long term illnesses, such as Alzheimer’s or Parkinson’s disease generate anticipatory grief and a diagnosis of incurable illness engenders a sense of urgency. In Bennett’s research, a participant, Mrs T, described such an event:

‘He knew and I knew and he was marvellous. He got everything done so that he kept saying, “I’ll leave you okay, we’ll have this done and that done”’.  

On the other hand, the more general complex long-term conditions that many older people experience do not encourage looking ahead, especially when punctuated by episodes of illness from which individuals recover.  This was evident in our study when Robert (aged 83) talked about their need to move to a care home together ‘soon’ so that his wife would be better able to adjust to change after he died. Sadly, they left it too late and he died in hospital within a year. Decisions such as Robert’s typically take a long time, sometimes generate tensions within couples and are even worse when the alternatives appear bleak.  Philip (aged 88) said,

‘If my wife falls by the wayside I will have to seriously think about getting myself into a care home’. Philip remained unsure about this because ‘when that door closes you don’t know what happens’.

Far from engendering a sense of security, as Philip found the care system actually compounds the fear of the future because of what might happen. It has become part of the great unforeseen that we face in old age, which is capable of change and which should change.

 

“Just throw a match at me and light me up…..”

By Dr Kerry Jones

These were the words spoken repeatedly by someone anticipating the end of their life, yearning for it, but not achieving it, that is not when they felt it should happen. Their life was a long life which ended in hospital and was preceded by considerable time in a ‘care’ home. Except it wasn’t really their home, not the one they wanted which was to be surrounded by friends and family already long dead. The preference we hear is to die at home, but where then for those whose ideal ending is not at home because it feels like it belongs to someone else and is shared by many, several of whom represent strangers? The hospital then was the departing place, a site of visitation, of cards that could be left as tokens of gratitude for warm hugs through long nights and of long days in the park and the invitation to say goodbye, to let go, to be at ease and return to those long since gone… to go into that good night.

 

There is no perfect place to die, at least not yet…..we have a long way to go. It is something we are striving to achieve, that and a good death and whatever that means to who and for what reason. Yet, if death invites and brings compassion, gratitude and a real sense of having felt and known a treasured other, then that will have to do for now.

 

“Living longer”, is that good news?

by Jana Kralova
University of Bath

We will live much longer than any other generation before us. Is that good news? Have you asked yourself what does “living longer” actually mean? In what condition will you be in when your time for “living longer” comes? And how much of your life does this phase amount for?

For about first decade following your retirement, you are likely to be in fairly good condition and thus be able to enjoy a rather good quality of life. It is that time when people often go travelling, write books, enjoy their families, hobbies and so on. That is a good time. And it used to be the case that we would die at the end of that decade. Fairly worn out, but quite happy. Peter Laslett (1991) calls this the third age.

However, nowadays we may live extra decade, two, or even three. Yes, we can make arrangements and prepare, be financially secure and so on, but (!) is that really going to make the difference to our quality of life?

It is typical that with your withering health and independence some kind of accident will occur, usually a fall. As a result of it, you tend to be hospitalised or cared for for some weeks or even months. You may have to go to respite care for some time or you may need to move to a care providing facility. Your inability to maintain your routine will further exaggerate your deterioration all of which will limit your ability to take part in everything that you have been; spouse, grandparent, volunteer etc., as well as majority of what you found the joy in; your hobbies or going out.

So this “living longer”, what do you think it is like? The bedroom decorated with few meaningful belongings, the bed – with you in it, the window and four walls. If you are in what academics call the fourth age, you will be very frail, possibly doubly incontinent, your sight, your taste, your hearing, your ability to orient yourself in time and space may all be severely compromised. You may be experiencing a lot of physical as well as emotional pain. Even if you are in fairly good condition, your ability to do things will be minimal, but you will have a lot of time on your hands to think.

Think over and over again about your life. All the things that you have done right, all the things that you have done wrong, of all the people that you have loved, but also of all of those that you have hurt and can no longer say sorry to as they are either dead or lost along the journey of life. You may have a regrets that will haunt you, you may wish you had lived your life differently. Such a thoughts may be quite distressing and have been termed biographical pain by Prof. Malcolm Johnson.

Alternatively, it is just as possible that you may develop some form of dementia.  Although there is valuable data from research, even more experience of the family members and carers but still, do we really know how that person feels? How will you feel? How about if we are at times completely aware of our unawareness at other times?

As a result of these processes you will become very dependent on your carer; the majority of us will. That is not only for food and hygiene but also for the human contact and the daily interaction. With the majority of your family members  overcommitted with work load, families, living in different countries or simply busy, it is likely that for anything from few days up to a decade or even longer your quality of life may depend on a person who doesn’t really know you, who is likely to be paid very little but upon whom your quality of life is likely to depend.

Are you hoping that paying a live-in carer or private care will guarantee you a good quality of life? But how about this biographical pain and lack of social contact?  Simple things such as; a heartfelt hug, a meaningful conversation or a cup of tea just the way you like are amongst  the most painful losses that we may encounter during our “living longer”. And how about if in order to “save your life” upon your development of diabetes you will be deprived of your favourite sweets? And in order to reduce your blood pressure you will no longer be allowed butter on your toast or that morning cup of coffee? And of course, for hygiene purposes you will be having to undergo that bed wash every morning, during which you will freeze no matter what is temperature in the room at the time because your circulation is no longer able to warm you up. In fact, you may be cold for the rest of the day, this does not really occur to many. And would they put your make up and do your hair the way you used to do for last seventy odd years? Will you have a chance to choose your TV channel or your type of music? Will someone take you outdoors?

Once as a carer I was asked by a man who could be said to have been in fourth age and with advanced dementia whether I would go out for dinner with him. At the time I thought “oh bless you” and politely refused. However, looking back at it now I wish I had taken him out. Although from procedural and practical point of view it would have been impossible. Now I understand, but it is too late, John is dead. He liked his coffee fairly strong with two spoons of sugar and a cigarette. No, it wasn’t good for his health, but it made him happy.

Hence my question to you: is “living longer” good news?