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BEREAVEMENT IN THE LIVES OF PEOPLE WITH INTELLECTUAL
DISABILITIES
Sandra F Dowling (UK)
The experience of bereavement
"Grief is the price we pay for love" (Parkes, 1986).
Just as people with intellectual disabilities form close bonds
and loving relationships, so too do they experience grief at times
of loss. However, it is still common for people to be marginalised
in bereavement.
Who we are and how we live affects the way we grieve. We are
all members of various cultural, social, religious and economic
groupings, different ages and genders. Although there is a commonality
in responses to bereavement at an emotional level, the manner
in which we actively grieve or mourn is shaped by the institutions
and norms of our social group. Mourning rituals emerge in many
guises in different social clusters; individuals within the groups
variously interpret these dynamic, fluid structures influenced
by changing outlooks and the infusion of ideas from outside, (Parkes
et. al., 1997; Doka and Davidson, 1998). Ideas and norms in the
prevailing social world influence attitudes and actions. Focusing
on bereavement in the lives of people with intellectual disabilities
this paper will consider the way in which mutating social positions
have variously influenced the manners in which people with intellectual
disabilities grieve, or are frequently subject to "disenfranchised
grief." (Doka 1989)
The emotional lives of people with intellectual disabilities
There is widespread neglect of the emotional lives of people with
intellectual disabilities, and therefore it had been widely thought
that they did not experience grief and, as though always living
in the present, did not recognise or comprehend loss. Paradoxically
it was also commonly mooted that their sorrow would be so great
that they should be protected from the harsh reality of death.
These ideas have been widely refuted, through the pioneering work
of Maureen Oswin (1981, 1985, 1991) and Hollins et al; (1985,1989),
whose endeavours confirmed the view that people with intellectual
disabilities respond to bereavement and loss in essentially the
same way as anyone else.
Recent research (e.g. Hollins and Esterhuyzen, 1997; Bonell-Pascual
et. al.1999) has shown that for people with intellectual disabilities
the effects of bereavement can be prolonged with people experiencing
more anxiety, depression, irritability and other signs of distress.
During the last decade people with intellectual disabilities
have become more visible members of our communities. The majority
have always lived with their families, irrespective of the creation
of dedicated residential services. It is still common for people
to be kept in ignorance of the death of someone they are close
to and for them to be prevented from attending the funeral or
other rituals carried out at times of bereavement such as viewing
the body, visiting the grave or scattering ashes. This could be
regarded as a 'benevolent exclusion', for protection from the
harsh reality of the situation is often the stated motivation
behind such decisions. However, this masks the complex web of
preconceptions and assumptions that are mobilised in support of
people being exiled from their grief. People making decisions
on behalf of those with intellectual disabilities often question
their ability to understand death or recognise loss, but at the
same time, paradoxically, they predict that the person with intellectual
disabilities would be overwhelmed by emotions stimulated by loss
through death. Family members may also tend not to add their own
fears into the equation, and fail to recognise their own -often
uncritical -adoption of ideas that in effect legislate against
inclusion.
Protecting people from their grief
Fear of the consequences often prompts a decision not to inform
someone of a death and to exclude them from involvement in the
rituals attached to bereavement. The family may be anxious as
to their own ability to cope with the feelings of their intellectually
disabled relative, at a time when they are absorbed by their own
grief. Further factors obviating inclusion, such as assuming an
inability to understand or recognise loss, are contested. Not
knowing about an anticipated death means it will come as a sudden
shock, with no opportunity to prepare for it emotionally; thus
increasing the possibility of a poorer outcome for the bereaved
individual.
When a person with intellectual disabilities loses a parent through
death, it is not only a loss of someone who is loved, but is also
the loss of the person most familiar with their needs, their likes
and dislikes, and with whom they had a trusting relationship.
It is also loss of the person with whom they could best communicate,
who cherished them, whose attention was centred on them, and who
provided comfort and companionship. Furthermore, it is loss of
the person who recognised and valued their role within in the
family, of the life that had been led until now, and of other
people who had been part of that life, through the dead relative
(Division of Mental Health, 1998).
If living with a sole surviving parent, the bereaved person may
have to leave the family home shortly after the death, perhaps
to temporary accommodation (Oswin, 1991). Additional major challenges
may result, such as adjustment to a succession of new carers and
idiosyncratic procedures, and meeting new companions with intellectual
disabilities, all with their own competing demands. Unexplained
and unexpected changes like this can lead to a loss of individuality,
whilst the negotiation of unfamiliar and non-individualised environments
can have the effect of making their disability appear worse. (Division
of Mental Health, 1998). Staff may be unaware of their background,
and treat behaviours that are a reaction to loss as signs of mental
ill-health rather than grief. Inappropriate 'treatment' of quite
natural responses to loss can make a difficult situation much
worse (Bicknell, 1983).
Resistance to the negative stereotyping of people with intellectual
disabilities is vital in order to stimulate further progress,
both ideologically and materially. The loss of a parent will be
a devastating experience for the majority of people, but to avoid
the additional losses a person with intellectual disabilities
may encounter, increased social integration is essential.
"Exposure to cues relating to bereavement (rather than avoidance
of these) have been shown to be crucial in the recovery from grief,"
(Hollins and Esterhuyzen, 1997). What are the consequences of
avoiding such cues?
Case Study:
James a forty-two year old man with Down's Syndrome, lived at
home with his parents, his brothers and sister had left home and
the three remaining developed a mutually loving and supportive
relationship, within which James played a key part. James's father
became ill, he was taken into hospital and it was clear that he
would not recover. James was taken to visit his father in hospital,
he had been worried about his dad, but was relieved to see that
he looked comfortable and was being well cared for. James's mother
informed the day centre he attends, of the situation, she asked
them to be sensitive to the fact that James was fully aware of
what was going on and that he may want to talk about it. The day
centre staff supported James to make a card for his father and
were able to answer some of his questions.
| James was able to say goodbye to his father
before he died; they spent some time alone together, and this
is something that James fondly remembers. James accompanied
his mother to view his father's body. His mother says that
although James was a little anxious at first, he was a great
comfort to her and she could not have managed without him.
Prior to the funeral a 'seniors group' at the day centre invited
James to come to one of their meetings, some of them had been
to funerals before and were keen to share the experience with
James so that he knew what to expect. |
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James attended the funeral. He was very sad as his mother
had expected he would be but he welcomed people to his home
afterwards and was able to offer support to his mother throughout
the day. James carries a photograph of his father with him
in his wallet and proudly wears his fathers watch. He talks
openly and spontaneously about his father whom he misses
greatly. However, through the recognition of his loss and
the support of his grieving, James's bereavement did not
provoke undue difficulties.
There are significant positive steps being taken in the
provision of support services aiming to alleviate difficulties
and improve outcomes following bereavement in the lives
of people with intellectual disabilities. They form part
of continuing progressive development in both attitude and
in practice. However, it is not a time for complacency but
for continued action towards replacing 'common sense' attitudes
supporting exclusion, and promoting a new 'common sense'
of inclusion in all aspects of people's lives.
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Some points to bear in mind
i. Euphemisms about death disadvantage people. For example: Telling
someone that their mother or father has 'gone to sleep' may seem
a kind way to break the news of their death, but may in fact be
the seed of later problems. Sensitively tell people what has happened
using plain language.
ii. Always enquire into the bereavement history of patients who
have an intellectual disability, and take into account other losses
that may have resulted, such as moving home or losing contact
with other significant people. Make sure that these are recorded.
iii. People with intellectual disabilities may express difficult
emotions through their behaviour. If there has been a change in
one of your patients with intellectual disabilities, ask about
any past bereavements or other significant losses. These may not
necessarily be recent, but past losses could help explain current
actions.
iv. Address people with intellectual disabilities directly, irrespective
of whoever is with them. If they have experienced bereavement
say you understand how sad and painful this must be.
REFERENCES
Bicknell, D.J. (1983). The psychopathology of handicap. British
Journal of Medical Psychology 56, 167-78.
Bonell-Pascual, E., Huline-Dickens, S., Hollins, S. et. al. (1999).
Bereavement and grief in adults with learning disabilities. A
follow-up study. British Journal of Psychiatry 175, 348-350.
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Doka, K., and Davidson, J. D. (1998). Living with Grief. Washington
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This article was published on the site in 2002.
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