It could be argued that grief and loss are amongst of the most significant yet underacknowledged issues for people with intellectual disability in the counselling context. All people experience grief and loss in their lives, yet people with intellectual disability often experience many losses in many areas of life over long periods of time, and these often go unrecognised (Riches, 2008). This is compounded by a common assumption of intellectual disability: that people with intellectual disability are not capable of experiencing grief. In situations of death and bereavement, many are shielded from fully experiencing the grieving process (Riches, 2008).
People with intellectual disability can experience a great sense of loss and grief simply by being aware that they are ‘different’ to others and feeling inadequate because they are not able to do things or communicate the same way as other people. In addition, continual negative evaluations of self, from both internal and external sources, make positive self-esteem difficult to maintain (MacHale, McEvoy & Tierney, 2009; Riches, 2008). The social construction of disability as ‘other’, ‘different’ or ‘limited in capacity’ can be a significant contributing factor to the sense of loss that people experience. When support for individuals is limited to meeting basic physical needs, rather than working towards achieving the same life goals as other members of the population, the presence of grief and prolonged grief reactions are not surprising.
Anger, anxiety and depression are all common grief responses for people with intellectual disability. Unfortunately, these responses are often dismissed or misinterpreted as intrinsic to the person because of their disability (MacHale, McEvoy & Tierney, 2009; Riches, 2008). Neglecting the emotional life of a person with intellectual disability can lead to complex behaviour with significant negative outcomes for the individual and those around them (Blackman, 2008). For example, a prolonged grief response of anger is likely to be misinterpreted as ‘challenging behaviour’, and the underlying cause of the behaviour may be missed or dismissed.
Bereavement following the death of a family member or other significant person is another important consideration. When a significant loss in a person’s life is not recognised, people with intellectual disability can experience sudden emotional and behavioural difficulties, which might be exacerbated by other psychosocial factors such as social isolation, poor physical and mental health, limited support networks and limited opportunities for the expression of emotion in appropriate and helpful ways.
Understanding the concept of ‘death’ can be difficult for people with intellectual disability. This can be exacerbated if they are shielded from seeing their loved one after they have passed away, or discouraged from attending funerals and other important ceremonies (which provide the concrete understanding of death that people often need). Having a reality-based understanding of what it means to die is crucial in helping a person to come to terms with their loss and cope during the grieving process. Grasping the full concept of death requires an understanding of the finality of death (that death is final), the non-functionality of death (that bodily functions cease at death), and the universality of death (that all living things die) (MacHale, McEvoy & Tierney, 2009).
In situations where counsellors are working with a client with intellectual disability who is grieving the loss of a loved one, it is helpful to assess the client’s understanding of the concept of death and find concrete ways of explaining the concepts to aid in their grieving process.
Families and support staff are both important sources of support following bereavement for many people with intellectual disability. However, it is common for support people to attribute anxiety, depression or challenging behaviour to the person’s disability rather than seeing it as a legitimate response to grief. Studies have also shown that support staff and carers are likely to overestimate an individual’s understanding of the concept of death; this can limit the identification of grieving and attribute changes in behaviour to other causes (MacHale, McEvoy & Tierney, 2009).
These guidelines can be helpful when supporting people with intellectual disability through the grieving process (CPA, 2010):
- Ensure that support workers, carers or any other agency staff who work with the client are aware of the client’s loss
- Support the client to access warm, caring and trusting relationships during their time of bereavement – key supportive relationships provide a safe basis from which to heal
- Assist the client to participate in viewing their loved one’s body if they wish, and facilitate and support their attendance at memorial or funeral services or other important rituals of grief
- Repeatedly explain and communicate about the death using methods of communication that are appropriate for the client
- Support the client to keep photographs and other memorial items associated with their deceased loved one
- Help the client to memorialise their loved one’s life through activities such as tree planting, artwork, memory boxes, and so on, which help the client to cope with their loss and provide a positive connection to their memory.