Resistance in Relationship: Mothers’ Armoring of Their Adolescent Daughters Living with Facial Difference

Response

• Suzy Stead, BARyerson University, Toronto, ON, Canada

• Kate AtkinsonMcMaster University, Hamilton, ON, Canada

As a mother of an almost 18-year-old girl with Treacher Collins syndrome, this chapter caused me to pause and reflect on many questions I have asked myself in the last few years. When my daughter and I were approached to take part in the study, we were excited at the prospect of speaking about our relationship and experiences. We also appreciated the authors’ qualitative and contributional approach, given it aimed to have our voices heard, rather than reducing our experiences to numbers and graphs. Our stories are not all or always terrible; we are bright, resilient, and doing the very best we can. I am proud of our evolving relationship. It is immensely validating to discover through reading about the other mother-daughter relationships, that our ways of being together are not only mutual, but shared; that we are not atypical, dysfunctional, or abnormal.

We appreciate the authors’ insights about the outdatedness of the literature that describes us, especially the individualizing tendencies of existing research. Contrary to popular belief, we do not live in bubbles. I think that society’s responses have more to do with how we feel than statistics let on; that the way Katie moves in the world, understands herself, and the way I move in response, are fueled largely by the way she is spoken about, looked at, and touched. As a community of mothers, we are inundated with violating messages about how we should “fix” our children to “help” them, and our children are bombarded with messages about how they should be “fixed” to help themselves. These responses, both implicit and explicit, are mentally, psychologically, and emotionally draining on Katie and on me, but it often feels that there is no recourse. We have all internalized these messages to such as extent that even within our inclusive community, my daughter and I have noticed members making comparisons as to who is more affected; a theme that surprisingly did not arise in the narratives of other mothers and daughters, but can be as damaging as messages from those who do not have differences themselves.

Considering the implications of these messages has made me keenly aware of the role of the organization referenced in the chapter. As a family, we have been involved with this network since Katie was only a few years old, and I cannot speak more highly of the impact it has had on us as individuals and as a family. We have access to resources that address a variety of issues, a listening ear when we are struggling, and answers to complex questions when they arise. More importantly, we are reminded that we are not alone. We thus know the benefits that a difference-positive space can make in the lives of parents and young people. As such, we echo the authors’ call for increased access to affordable, appropriate, and accessible resources and services, so that everyone has the opportunity to feel armored in their lives and relationships.

Still, I think it is true that mothers do armor their girls by continually validating and empowering them. This is fundamental to their success, as it scaffolds the development of their sense of self. It also begs the question as to whether we, as mothers of affected daughters, differ from those whose daughters do not have a facial difference. In a way, the strategies are the same given our cultural obsession with beautiful bodies that threatens to damage all young people. As mothers, we encourage our daughters to try new things, pursue their interests, and dream big dreams. Don’t we all want to instill a sense of self-reliance and provide buffers against any negativity to protect our daughters from hurt? Sure. But at the same time, this need to armor is likely intensified in us; it starts much earlier and is called upon more frequently. We compulsively try to set the stage for success, or overthink situations with the intention of making our daughters’ outcomes the best they can be, mainly because when it comes to the self-actualizing principles of success, happiness, and self-love, our girls are sometimes a step behind (for reasons identified in the chapter).

What I had not previously considered was that there could be other mothers who feel this same pressure. I was struck by the similarities between my experiences and the experiences of Black mothers and daughters. I had not recognized how Black women and women of various ethnicities with facial differences are similarly marginalized, but this link connected me more than ever to other mothers who prioritize the construction and maintenance of their daughters’ self-worth, in a world that systematically discriminates against them and undermines their personhood. I agree with the authors’ recommendation to establish a wider community that brings together people classified according to racial, physical, or other difference. Categorical fractures do little to combat the divisive “othering” we have all been subjected to as parents and individuals living with a disability or difference. There is strength in recognizing our individuality while simultaneously being immersed in a powerful congregation of difference.

I also had not given much thought to the absence of sexuality-related discussions. In honesty, I have not spoken much about this topic with other mothers. When our daughters do have partners, we discuss it, but not in detail. We may not be comfortable broaching these topics with our girls, but we may also wonder, albeit silently, if our daughters will have intimate relationships due to their facial differences. When other mothers in our circle have mentioned that their daughters are dating, others rarely respond with shock, disbelief, or disapproval; rather, we are excited. Perhaps these feelings emerge out of relief that possibly our daughters, too, will not grow old without experiencing intimacies other than those we share as mothers and daughters.

As the authors note, many parents are uncertain about our role in the lives of our children with disabilities. I’d like to think that we are doing a good job, even in difficult circumstances. In that sense, the armoring process described here is reciprocal; to witness the experiences of daughters living with facial differences, whether mine or those of other mothers like me, validates and empowers me in knowing that this work, however challenging and emotionally charged, has positive effects. Through her recognition of the armor I help her to build, Katie helps me to build mine: her recognition of her own adaptation and successes becomes my validation; her strength and budding self-worth, my empowerment. To hear appreciation in her words, gives me gratitude.