Loss and Learning Disability: A Disenfranchised Perspective

1
Loss and Learning Disability A Disenfranchised
Perspective

• Dr Sue Read,
• Reader in Learning Disability Nursing,
• Keele University, Staffordshire, UK
• s.c.read_at_nur.keele.ac.uk

2
Aims are to

• Explore the concept of loss in relation to
  proactive support of people with a learning
  disability
• Integrate the concept of disenfranchised death/
  grief when supporting bereaved people with
  learning disabilities
• Introduce a continuum of support model (Read,
  2005 Read and Elliott, 2007).

3
Defining learning disabilities

• DoH (2001) described people with learning
  disabilities sic as having a reduced ability
  to understand new or complex information, or to
  learn new skills (impaired intelligence) with a
  reduced ability to cope independently (impaired
  social functioning) which started before
  adulthood and with a lasting effect on
  development.

4
Definitions

• Clearly this definition describes individuals who
  may have a whole range of different presenting
  competencies in communication, social skills,
  social functioning and / or behaviour.
• People with learning disability are amongst the
  most socially excluded and vulnerable groups in
  Britain today (Department of Health, 200114)

5
Similarities

• When we are born.
• When old age approaches.
• When death approaches.

6
Importance of Loss

• I thought that it sometimes seems as if all our
  lives we are trying to cope with loss either
  the fear of it, or the memory of it or its raw
  immediate presence.
• Oswin (1991 15)

7
Dorothys story

• Uniqueness of grief
• Impact of grief
• Remembered important details
• Spirituality
• Vulnerability
• Disempowerment
• Reliance upon others
• Paternalistic attitudes

8
Dorothys story

• Importance of storytelling (Jennings, 2005)
• Cathartic
• Healing nature (listening)
• Different spaces that are conducive to story
  telling opportunities
• Concrete
• Permanent
• Contribute to life story / memory work
• Creativity

9
A Poem About Mary

• The truth is I never leave you,
• Although my heart is breaking.
• Ill always remember that day you held my hand so
  tightly,
• I thought youd never let me go.
• (Read, 2007)

10
Listening to the voices of others

• People with learning disabilities do experience
  grief (Oswin, 1990 2000 Hollins Esterhyuzen,
  1997)
• Impact of grief is varied and often complex
  (Conboy-Hill, 1992 Hollins Esterhyzen, 1997
  Sheldon, 1998 MacHale Carey, 2002)

11
Jackies story

• My Story About My Babys Abortion

12
Listening to the voices of others

• response to bereavement by adults is similar in
  type, though not in expression, to that of the
  general population (Bonell-Pascual et al, 1999).
• Prone to multiple and successive losses (Oswin
  1991 Elliott, 2003)
• Cultural differences in bereavement support (Dodd
  et al, 2005)

13
Listening to the voices of others

• Vulnerable from a death and dying perspective
• Actively excluded from death and dying (Read
  Elliott, 2003)
• More complex the needs, the less likely hood of
  being involved (Read Elliott, 2003)
• People usually experience sudden as opposed to
  anticipatory grief (ONians, 1993)
• Have an external locus of control (reliant on so
  many for so much).

14
Why hearing the words is difficult

• failure to recognise the impact of loss on
  people with learning disabilities arises from our
  need to see such people as lacking in effective
  emotional apparatus..this conveniently feeds our
  own need to avoid discussion of pain and grief
  and so the cycle of ignorance and inaction has
  been perpetuated
• (Conboy-Hill,1992 151)

15
Why hearing the words is difficult

• Cultural and societal taboos generally
• Emotional needs often remain neglected (Arthur,
  2003)
• Perceptions of ability to grieve (McLoughlin,
  1986 Elliot, 1995 Read, 1996)
• Cultural and societal taboos death and
  disability (Oswin, 1991)
• Over protectiveness (Deutsch, 1985)
• Carers feelings of fear, inadequacy and
  uncertainty (Emerson, 1976 Thurm, 1989 Oswin,
  1991)

16
Why hearing the words is difficult

• Communication (Kerr et al, 1996)
• Often the individual lacks an appropriate verbal
  repertoire
• Support person may not know how to communicate
  effectively
• Uncertainty around what has been absorbed /
  understood
• Counselling is perceived as a talking therapy
• Combination of cognitive ability, attention span
  and limited emotional vocabulary (Conboy-Hill,
  1982)
• Low expectations, stereotyping and stigma
  (Kitching, 1987)
• Limited experience of grief and grief rituals
  (Cathcart, 1985)

17
Why hearing the words is difficult

• Emphatically bad attitudes double taboo of death
  and disability (Oswin, 1991 2001).
• How death is conceptualised.
• Parents and carers tending to focus upon the
  symptoms rather than addressing the cause (Crick,
  1988).
• Lack of appropriate specialist education,
  training and supervision (Read, 1996)

18
Why hearing the words is difficult

• Record keeping (accessible meaningful)
• Lack of heritage and history
• Appropriate assessment formats
• Lack of empirical research
• Grief may go unnoticed
• Grief may be ignored
• Results in disenfranchised grief.

19
Disenfranchised Grief (Doka 1989 2002)

• .the grief that persons experience when they
  incur a loss that cannot be openly acknowledged,
  publicly mourned, or socially supported.
• The relationship is not recognised
• The loss is not recognised
• The griever not recognised (1989)
• The circumstances surrounding the death
• The ways that individuals grieve (2002).

20
Responding to disenfranchised grief (Doka 2002)

• Acknowledging the loss/ legitimise the emotional
  pain
• Active listening
• Empathy (making sense of life experiences by
  interacting with others, sharing and supporting)
• Meaning making (finding benefits).

21
Responding to disenfranchised grief (Doka 2002)

• Constructive use of ritual (powerful therapeutic
  tool)
• Funerals
• Rituals of continuity (lighting candles on
  certain days)
• Rituals of transition (mark the change or
  transition stage)
• Rituals of reconciliation (allow person to offer
  or accept forgiveness or to complete some degree
  of unfinished business)
• Rituals of affirmation (allow individuals to
  affirm the loss and recognise any good things
  that have come out of the loss experience).

22
Responding to disenfranchised grief (Doka 2002)

• Sharing of fears and anxieties
• Spiritual support
• Support groups
• Counselling

23
Responding to Loss Continuum of Support Model
(Read, 2005)
24
Impact of the model Education

• Helping people to understand about loss using
  proactive and reactive education
• Group work (Read et al 2000 Read
  Papakosta-Harvey, 2004)
• Openly sharing feelings and responses to loss
• Retaining tangible memorise (life story work)
• Telling and sharing stories (Jennings, 2005).

25
Impact of the model Participation

• Nurturing a healthy grief response
• Using naturalistic opportunities to talk and
  express feelings generally
• Developing and using a variety of accessible
  resources.

26
Impact of the model Facilitation

• Reactive support following a loss or death
• Active listening
• Assessment of needs finding out what the person
  wants
• Communicating in a meaningful way
• Offering consistent support
• Normalising the grief response
• Referring on when appropriate.

27
Impact of the model Therapeutic Interventions

• Assessment of need (knowing when to refer on)
• High anger
• Profoundly missing the deceased
• Restricted social networks (support)
• Identified as not coping (Elliott, 1995).
• Those excluded from rituals
• Those who have not been told about the death for
  considerable time afterwards (Read, 2007)

28
Impact of the model Therapeutic interventions

• Psychotherapy.
• Guided mourning interventions.
• Counselling

29
Bereavement Counselling

• the skilled facilitation of the individuals
  response to loss through purposeful communication
  within a caring relationship forged upon trust
  and mutual regard.
• The core conditions are seen as central to
  this reciprocal relationship.
• (Read, 2007)

30
Bereavement Counselling

• Such skilled facilitation may involved a
  range of activities in addition to the spoken
  word (such as the development of memory books
  art work photographs) through which the
  counsellor can access the individuals thoughts,
  feelings and inner dynamic world in an effort to
  engage with their sadness, understand their pain
  and help the person to explore their feelings.
• (Read, 2007)

31
Access to Counselling

• Access to ordinary counselling services would be
  ideal, but as yet, the practitioners within these
  services are not geared to our clients needs and
  the services themselves are not free. (Conboy
  Hill, 1992 168)

32
Current Perspectives

• Grief Support Is at Best Inconsistent,
• and at Worse, Non Existent
• (Read Elliott, 2007)

33
To conclude..

• Loss is an important feature of everyones lives,
  including people with disabilities.
• Marginalised groups (such as people with learning
  disabilities) often experience disenfranchised
  grief and disenfranchised death.
• Disenfranchised grievers may need extra support
  to express their grief in a meaningful fashion.
• Education is the basis for effective support.

34
To conclude.

• Addressing practice issues e.g. Breaking bad news
  and grief rituals (Raji Hollins, 2003), record
  keeping.
• Reinforcing the normality of grief (James, 1995).
• Actively looking for grief responses (Kitching,
  1987).
• Adopting a proactive approach to loss (PCP
  collaborative working).
• Having carers who are confident, skilled,
  comfortable and knowledgeable
• Explicit guidelines and directions
• More empirical research
• Education and training

35
To conclude..

• Developing a range of strategies and resources
• Grief processing interventions (Lewis, 1991
  Kaufman, 1994 James, 1995)
• Creative approaches to facilitation
• Resources
• Books manuals (books beyond words series When
  someone dies, Speakingup etc)
• Psychological support (e.g. Counselling).

36

• .people with learning disabilities are a part
  of us, rather than being apart from us.(Todd,
  200623)

37

• People with learning disabilities have more
  similarities to us than differences from us.
• (Krishef, 1983 cited in McDaniel, 1989)