Disenfranchised grief and infant loss

Disenfranchised grief and infant loss

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October is Pregnancy and Infant loss Awareness Month. Throughout this month, we acknowledge the loss that many families have when they lose a baby during pregnancy or infancy.

This causes incredible grief and feelings of loss, not only for the parents who were preparing to welcome a new life into the family, but for other family members. Also, for siblings, who may have been preparing to become the ‘big sister’ or ‘big brother’, and for those who may have become grandparents for the first time. It is not only loss of the family’s baby, but also loss of the hopes and dreams that each person may have had about their life, with their baby.

When such a loss occurs for parents with disabilities, many service providers or family members may feel ill-equipped to respond appropriately to these parents. Health and other service providers often feel untrained in supporting parents with a disability during pregnancy and early mothering1. When infant loss occurs, this is even more so. Lack of training may result in providers using platitudes. However, for parents with a disability, this approach can lead to them feeling more stigmatised.

This is particularly so for parents with intellectual disabilities, who often face enormous stigmatisation which begins in pregnancy and continues as they parent. These parents are more likely to have their babies and infants removed from their care2,3,4. Whilst their infant has not died, the loss that these parents face at removal is not unlike those of other parents experiencing stillbirth or miscarriage. It is a loss of dreams for themselves and their child. However, unlike abled parents, those with disability often experience this loss as disenfranchised grief.

Disenfranchised grief is described as grief in which the grievers ‘feel like they can’t share their pain or feelings with others – that their grief is unacceptable, unworthy or wrong and that they don’t have the right to be feeling the way they do’ 5. Essentially, their grief is not validated by others. When infants are removed from parental care, feelings of disenfranchised grief occur as family or providers see them as unfit to parent. Parents with intellectual disability particularly feel a lack of social acknowledgement6.

Disenfranchised grief and infant loss -

When infant removal occurs, parents often feel devalued, and further stigmatised and labelled. Once labels such as ‘other kids taken away’ or ‘unfit to parent’ are given, it is extremely hard for these parents to show they can parent in the future. This stigmatisation continues into other pregnancies, with parents feeling continually scrutinised about the choices they make and having to prove their worth as parents.

Unlike other losses which usually lead to acceptance and remembrance, parents who have had children removed, continue to experience the raw emotion every time they are have visits with their babies. They are mothers, yet not mothers, fathers, but not fathers. The pain of their loss never goes away, as we know from the stories of parents and children of the ‘Stolen Generation’ in Australia7.

Disenfranchised grief and infant loss -

Grandparents and other family members also lose their dreams when children are removed from parental care. They lose their dreams of grandparenthood and may be disenfranchised in their loss and grief as well. If they become kinship carers for the baby, they may lose the relationship with their child now adult as grandparents become the parents. Other grandparents may only see their grandchild infrequently, as they are deemed an ‘at risk’ family with the baby going into non-family foster care.

So, let’s pay tribute this month to ALL those parents and families who grieve the loss of a baby or infant.

  1. Strnadová I, Bernoldová J, Adamčíková Z, Klusáček J. Medical personnel’s knowledge, attitudes, and experiences with regard to mothers with intellectual disability in the Czech Republic. Journal of Intellectual & Developmental Disability. 2019;44(1):81-91.
  2. Conder J, Mirfin-Veitch B, Sanders J, Munford R. Planned pregnancy, planned parenting: enabling choice for adults with a learning disability. British Journal of Learning Disabilities. 2011;39(2):105-12.
  3. Llewellyn G, McConnell D, Ferronato L. Prevalence and outcomes for parents with disabilities and their children in an Australian court sample. Child Abuse & Neglect. 2003;27(3):235-51.
  4. Mayes R, Llewellyn G. What happens to parents with intellectual disability following removal of their child in child protection proceedings? Journal of intellectual & developmental disability. 2009;34(1):92-5.
  5. Hogarth, M. Disenfranchised grief, The Rosemary Branch, Autumn 2015, Australian Centre for Grief and Bereavement, https://www.grief.org.au/uploads/uploads/Rosemary-Branch-Autumn-2015.pdf
  6. Mayes R, Llewellyn G. Mothering differently: Narratives of mothers with intellectual disability whose children have been compulsorily removed. Journal of Intellectual and Developmental Disability. 2012;37(2):121-30.
  7. Commonwealth of Australia, Bringing them home: National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from their families, 1997, https://humanrights.gov.au/sites/default/files/content/pdf/social_justice/bringing_them_home_report.pdf