Stuart Todd, Reader in Intellectual Disability Research, University of South Wales, on the shifting research focus from death to how dying is communicated to those with an ID.
For more than twenty years, the aftermath of the death of a loved one in the lives of people with intellectual disabilities was starkly revealed to be an issue sidestepped awkwardly by services and family relatives. Of course, previously to that it was considered that people with intellectual disabilities were not emotionally capable of feeling grief. However, once there was recognition that people with intellectual disabilities had emotional selves, anxieties arose about how best to manage those emotions. A death, then, ushered in a benevolent but silent conspiracy of silence. The person with intellectual disabilities might by themselves come to accept that a familiar face would no longer be seen but wonder about the reasons why. When families reconnected and established bonds through the sharing of grief rituals, it was likely that the person with intellectual disabilities was absent. How could death be communicated to a person with intellectual disabilities? The news would be so harrowing that surely it would be best not to know?
I recall in a study I conducted with Professor Sue Read, listening to the account of a middle aged man with intellectual disabilities who told me that he had not been told when his mother had died some years before, and that he had not been invited to funeral. When he did find out, he wondered if he might have been the cause of her death, because he could recall having been told that ‘One day you’ll be your mother’s death!’ The well-meaning silence may have been the common way to deal with death as far as people with intellectual disabilities were concerned at that time. Yet one wonders what the long term consequences were for people with intellectual disabilities? This has been considered by some to be a contributory cause for a high level of psychopathology and challenging behaviour in this population. This enduring and repressed grief was well captured in the title of Maureen Oswin’s famous work on bereavement and intellectual disabilities, ‘Am I allowed to cry?’
Times have changed and increasingly people with intellectual disabilities are a part of grief rituals. It would be worthy of comment now perhaps if a person with an intellectual disability was not at the funeral of a loved one. The healing and comforting power of grief rituals, the reliving and restoring of bonds threatened by death are there. These are welcome steps, but there is still ground for caution. Some recent work in Ireland suggests that complex grief for people with intellectual disabilities is not so easily avoided. Although people might participate in these rituals, what meaning do they take from them? To what extent are people prepared for the death of a loved one? In some of my research, it seems that whilst we might acknowledge death in conversations with people with intellectual disabilities, we might be less than keen to discuss dying. Are people with intellectual disabilities told that someone might die soon? Do they experience anticipatory bereavement or is death typically presented as sudden. Sudden deaths, as the old saying goes, might be good for those who have died, but they are worse for those left behind. No time to prepare, to say goodbye, to ask those important questions or to underline the value of the relationship.
A good colleague of mine, Dr Noelle Blackman, rightly asks: ‘Why do we give people with the greatest support needs the most difficult deaths to deal with?’ So the research focus has shifted from death to how dying is communicated. None of this is new perhaps to people working in the area of intellectual disabilities or to families themselves. What might be surprising though is that although we might ask ‘What does the death of a loved one mean to a person with intellectual disabilities?’ we seem to have been less inclined to ask ‘What does the death of a person with intellectual disabilities mean to someone else, to a parent, a sibling or a friend?’
One of the reasons that bereavement came to be a focus in intellectual disability research was that people with intellectual disabilities were now increasingly living with or in close contact with their parents when those parents died. Many people with intellectual disabilities are now expected to outlive their parents. However, the risk of early death for people with intellectual disabilities is still high. This means that many parents of people with intellectual disabilities will survive and have to live through the deaths of their child or adult child. Yet despite the scale and scope of the family research literature in intellectual disabilities, the issue of parental bereavement is largely overlooked. There are many possible reasons for this oversight. These parents are thankfully and increasingly in the minority. Yet it is still not an infrequent event. There is a hint in some of the theories that drove early family interventions with families. Bereavement theory was used to understand how parents dealt with the news that their son or daughter had a disability. Perhaps they experienced grief then.
Maybe those parents experienced a loss, but this surely was not the same as dealing with the real death of a living child. Another possible explanation for our lack of curiosity was that we were too concerned with ideas of the stress and anxieties of bringing up a child with a disability. Our focus was on supporting those parents living with a child with intellectual disabilities. Did parents whose child with intellectual disabilities died cease to have support needs? Were their bereavement experiences the same as those of any other parent? We can wonder and speculate about the reasons why we, as researchers, had not asked such questions. Yet when we hear the question we cannot pretend that we did hear it.
I first heard the question from a mother whose daughter was soon to turn 18. She had no desire to talk about adulthood and the future because she had been told all those years ago not to expect that her daughter would reach adulthood. This fateful event was approaching too soon now and no-one she knew in services would entertain her requests for help to come to terms with this. She was told to keep looking forward, to keep being positive. No-one wanted a conversation around death. How many parents were once told something similar: ‘Your child may never see adulthood’? How many parents have lived with a death anxiety? I never knew what became of that particular mother and daughter, but it led me to think about how parents were supported through their bereavement. The rest of this short article is given to describing the experiences of those who not only feared it might happen, but had to encounter it happening.
Some years I was given funding for research to look at the bereavement experiences of parents whose child or adult child with intellectual disabilities had died. They were not an easy group to find. Many were no longer in contact with services. There was also an element of over-protection in some cases—people thinking that it would be best all round if parents were not asked to recount their story or to be asked to many questions. Having myself had the experience of the loss of someone close, I never quite understood this sentiment. Those who have been bereaved never forget they have been. I advertised the study and asked for people to contact me if they wished to talk about the death of their child. In the end I was contacted by many parents who were keen to discuss this with me.
One of the first things I learned, other than the intense sense of loss they carried, was the detail with which many could remember the last moments of life of their child. Regardless of the years that might have passed, they could relive it in a way that made it feel it had just happened. They could remember who was present, the colour of the curtains or the noises they had heard. I put this down to the suddenness of the deaths of their children. The sense of shock was tangible. For many parents, the death of their child had not been anticipated. Some were on holiday when they heard the news. Some had just said goodbye to their child that morning before school or day service. They were expected home. Some of the parents had been told that their child would not survive into adulthood, but they never knew when death would come. They may have had repeated chest infections, but they always pulled through—until that last time. So many of the deaths were, in a sense, unexpected, even when they were expected. Some of the parents even said they felt some guilt that they perhaps had missed something in their child’s condition that, if acted upon, might have extended their lives. For others, it was the difficulty of taking in such news and the pain felt by sudden and unexpected separation. As I discussed, above sudden deaths are especially difficult to accept.
Another feature of their experience was that the impact of the death on them was often not well understood by others. They seemed to meet the reaction of others that the death of a child with disabilities could not be compared to the death of a non-disabled child. The parents reported coming across sentiments such as that the death must be a relief or an end of suffering. Yet these were not necessarily children who were suffering. They had a disability, but they had been healthy children. They were also the children of those parents. Anyone could imagine the awfulness of dealing with the death of a child. Yet if the child is disabled, should the awfulness be any less? The loss was also compounded by other losses; a way of life was lost. The parents may have spend several years in touch with specialist services, their staff and other families associated with them. With the death of their child, that world was also lost to them, often immediately. One parent recalled how a professional had said goodbye to them at the funeral of her daughter, with the parting words: ‘You’ll not be needing us anymore!’ However those words were meant, they were interpreted as callous and lacking in empathy. There was also a sense that even within the wider families themselves, there was a lack of understanding of what the death of their child had meant.
Another common experience for some parents was the loss of identity that followed the death of their child. Some of them had been parents for several years and had adapted their lives to the needs of their child and to their services. That was who they were. Who were they to be now? With amazement, they faced comments from others that they could now have their lives back. There was no life to go back to. In addition, some parents had welcomed the extended years of intimacy that being the parent of a disabled child had given them. The death of their child was not only about absence and loss, it was about the loss of close and constant physical contact and intimacy. For some mothers, their lives were almost inseparable from their children. It would be very difficult to overstate the sense of loss these mothers experienced. Yet, they felt abandoned by services. They felt the depth and scale of their loss, and the meaning their children had for them in life, were unrecognised by others. Their experiences echo the idea of disenfranchised grief (outlined by Ken Doka): a form of bereavement where the scale of the loss is not recognised by others. Since it is not recognised, it is not shared. It is silenced.
We have come to recognise that people with intellectual disabilities can express grief, and have a right to do so. Surely it is now time to extend that right to people who experience loss and grief after the death of a person with intellectual disabilities. It is still possible that many parents will outlive their children with intellectual disabilities. The lives of people with intellectual disabilities are now valued—their deaths must also be given meaning for others. Silence hardly seems the right response.