A word on having disAbilities
October 12, 2022
Can you imagine having just given birth to a newborn baby: that special smell that only newborns can bring, the joy of discovering their gender if you didn’t know already, and their intent gaze at you as you begin that lifelong relationship.
Birth is an incredibly emotional time, not only for parents, but for other family members who have been waiting for the new addition to their family. For many parents, birth brings joy. But for some parents, birth brings additional traumas. Trauma can have physical form, or it can be psychological and emotional. The thing about trauma, is that it does not go away. It continues to haunt the emotions of those involved and can become embodied in physical complaints.
Emotional trauma from birth is now recognised as a contributor to postnatal depression for some women. However, one group of mothers whose birth trauma is not acknowledged, is mothers with an intellectual disability. A significant number of these mothers internationally will have their baby removed from their care1, either after birth or at some time during early childhood. They are more likely than mothers with other disabilities or other disadvantaged groups to experience this2,3,4,5,. For most women with intellectual disability, the removal of their baby following birth is not recognised as birth trauma.
When parents go home to an empty cot, it is incredibly traumatic. We recognise this for mothers who have had a stillborn baby, or a neonatal death. Yet when mothers with intellectual disability do not take their baby home, health providers’ focus is mostly on having saved the baby from potential neglect by these mothers, and not acknowledging their grief as they face an empty cot. When grief is not acknowledged by others, it is known as disenfranchised grief. It is not only the mothers who experience disenfranchised grief, but other family members such as grandparents, aunts and uncles. They not only miss the opportunity to provide that much needed support for a new mother, but also in establishing their relationship with the new baby. Other family members who might take on kinship care of the baby, experience different kinds of birth trauma. That is, supporting both the mother who has lost her baby, whilst caring for a newborn themselves.
It is time to recognise that birth trauma that these mothers and other marginalised mothers who have their baby’s removed from their care experience. Often baby removal or assumption of care occurs in a covert way. That is, the mother or family are not told before the birth, that this will be the decision of child protection agencies. This increases the trauma for the mother and other family members, and decreases trust in health and social providers.
The trauma of removing baby’s can be reduced by open conversations during pregnancy, and assessment of mothering skills using processes adjusted for intellectual disability rather than using measures applied to ‘good mothering’.
When women are not able to mother full-time, we need to facilitate the opportunity for them to be mothers some of the time and acknowledge the vital role that they play as the birth mother in their lives. As Deborah Lee-Furness writes:
In my journey of self-discovery I realised that the relationship with our mums, which is our first relationship when we arrive in this world, has the most profound effect on who we are, how we are and what we do, beyond the obvious. That connection with our mamas, which starts, I believe, before conceptions then through the utero experience and then of course after birth. It shapes every thought, action and feeling we experience throughout our life. That relationship is for ALWAYS, whether you are in the same place or the other side of the world or even separated at birth…It is necessary for me as a mother to embrace both birth mothers of my children, as they are a part of who my children are. It doesn’t mean they need to be physically a part of our lives, but they need to be honoured and held close for their role in my children’s lives7.
References:
1. McConnell, D., Mayes, R., & Llewellyn, G. (2008). Women with intellectual disability at risk of adverse pregnancy and birth outcomes. Journal of Intellectual Disability Research, 52(Part 6), 529-535.
2. Redshaw, M., Malouf, R., Gao, H., & Gray, R. (2013). Women with disability: the experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy and Childbirth, 13(174), 1-14.
3. Conder, J. A., Mirfin‐Veitch, B. F., & Gates, S. (2015). Risk and Resilience Factors in the Mental Health and Well-Being of Women with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 28(6), 572-583. doi:10.1111/jar.12153
4. Mayes, R., & Llewellyn, G. (2009). What happens to parents with intellectual disability following removal of their child in child protection proceedings? Journal of intellectual & developmental disability, 34(1), 92-95. doi:10.1080/13668250802688348
5. Wilson, S., McKenzie, K., Quayle, E., & Murray, G. (2014). A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability. Child: Care, Health & Development, 40(1), 7-19. doi:10.1111/cch.12023
6. Llewellyn, G., McConnell, D., & Ferronato, L. (2003). Prevalence and outcomes for parents with disabilities and their children in an Australian court sample. Child Abuse & Neglect, 27(3), 235-251. doi:http://dx.doi.org/10.1016/S0145-2134(03)00004-8
7. Furness, D.-L. (2015). Mothers. In M. Sved, M. Linden, C. Nieman, L. Moriarty, M. Scott, & N. Kon-yu (Eds.), Mothers and Others. Australia: Pan Macmillan. pp. 28-29
DisAbilityMaternityCare has been established to provide women with disability and service providers information to assist in supporting them to become mothers. It is established on the premise that all women have the right to establish relationships, have consensual sex, and become mothers should they so choose.
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