This week I have been reading two excellent books exploring motherhood, caregiving, and disability – Lisa Freitag’s Extreme Caregiving: The Moral Work of Raising Children with Special Needs, and Gail Landsman’s Reconstructing Motherhood and Disability in the Age of “Perfect” Babies. If such topics interest you I would strongly recommend both books. While both are academic books written by academics, they both are also very readable.
Both books tackle a number of key issues related to maternal caregiving. For example, Freitag carefully unpacks the unrealistic expectations heaped upon mothers raising very complex children and explores medicine’s culpability. She argues that the ability to save infants without seriously considering the challenges to parents and family creates complex ethical issues that have been largely ignored by the medical establishment. It is no secret I agree with her.
Landsman opens with a discussion of the intense pressure placed upon women to “grow” the perfect baby and the resulting blame implicitly and explicitly launched at mothers who have a baby diagnosed with a disability. Landsman, drawing upon extensive interviews with mothers, shares stories of mothers who critiqued every mouthful, decision, and action during their pregnancy, as well as their decisions during their child’s early years. Mothers worried that it was something they had done that caused their child’s impairment. Their guilt was palpable. Both books critique the blame heaped upon mothers, first for birthing a child with a disability, and later for ultimately being unable to care for that child.
I can vividly remember many examples of mommy blame launched in my direction. It started in the NICU. For the early days of Matthew’s hospital stay he remained on life support at MUMC. But as he stabilized he was transferred to a “step-down” unit at a nearby, inner-city hospital. It was there that I had my first experience with blame. While at MUMC I regularly read Matthew’s medical chart. Many specialists joked that they should just hand me a pen and noted there was a section for occupational therapists in the file. I could write my contributions there. The team understood that part of my coping involved trying to understand what was happening. Reading a medical chart was part of that coping, particularly since I spoke fairly fluent medical-speak. So when we arrived at the step-down unit I picked up Matthew’s chart and proceeded to begin reading the transfer note. The nurse in the room freaked. She indicated that under no circumstances could I read Matthew’s file. This, of course, is not true and denying access could actually be grounds for professional misconduct for a regulated health professional. She became incensed when I pointed this out. She argued that mothers could NOT read the file and I would need a lawyer to obtain access. She became really pissed off when I pointed to my lawyer husband. What if I was an abuser and my infant’s injuries were caused by my actions, she demanded. How could they effectively document their care if they worried I might read their words? We were barely into the second week of Matthew’s life and my hypothetical role in his injuries was already on the forefront of a nurse’s conscience. The fact that my son had never been outside of an NICU at this point of his life, and that his injuries were actually caused by a physician, was an irony lost on the nurse.
Later as I struggled to breast feed my son who would eventually end up with a feeding tube I had a nurse tell me that me that not only could every baby nurse, but that nursing could change brain chemistry and structure! Wasn’t neural plasticity a wonderful thing she asserted. It could create new pathways in an injured brain since the baby was so young and the brain not yet formed. As an OT I knew what neural plasticity was, and I hoped like hell it would work its magic for my son as I struggled to get Matthew to latch. I lived through weeks of breastfeeding hell before finally giving up and purchasing bottles. I felt like an utter failure. If every baby could breastfeed Matthew’s inability to do so must be my fault. Because of my failure to breastfeed he would not experience this magical benefit of neural plasticity that might rewire his injured brain. His lack of recovery could probably be linked to my inability to feed my son like every other “good” mother. To this day I still harbour strong anger about this particular mommy blame game.
Over the years these messages have continued with well-meaning individuals offering advice that suggested that if I only changed a certain aspect of my parenting, caregiving, therapy regime, medical care, or faith/prayer life, Matthew would thrive (the fact that disability is seen as lack of thriving is fodder for another post). The constant feedback that I somehow had/have the power to change Matthew’s profound and complex disabilities, or that I might have been the cause of his challenges, has been a regular part of my parenting journey, and even to this day periodically pops up.
The truth is that most parents are the reason their children with disabilities are living full, rich, and meaningful lives, rather than the cause of their child’s disability. Life isn’t fair and sometimes things just happen. It would be nice if these messages worked their way into our collective narrative.