Amy Julia and her daughter Penny

Amy Julia Becker and her daughter Penny

Just under two years ago, Amy Julia Becker (amyjuliabecker.com) gave a keynote presentation at the Life to the Full: Disability, Belonging, Community conference that Christian Horizons co-hosted in Niagara Falls, Ontario. I was impressed by her theological insight and ability to relate profound truths to the everyday experiences of life with her family – in particular with Penny, her daughter with Down syndrome. Amy Julia lives in Connecticut with her husband, Peter, and their three children. She graduated from Princeton University and Princeton Theological Seminary and has authored a number of books. The one that most readers here would be familiar with is A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Pennyin which she explores the journey of motherhood from the shock of finding out that Penny was born with Down syndrome to the surprising blessings and joys that arose out of this relationship.

Amy Julia has long been a disability advocate. Her article from May of this year, “The Ministry of the Disabled,” highlights the need for Christians with intellectual disabilities to play significant roles of contribution and ministry within their churches. It is high time for people with disabilities to be welcomed, not as objects of pity, but as essential and contributing members of society and their communities.

White Picket Fences CoverWhite Picket Fences (WPF) is Becker’s newest book – released today! You can find ordering information here. I was fortunate to obtain an advance reader copy. Most of Amy Julia’s books arise from her heart as a mother, and WPF is no exception. The essential questions arose out questioning of how she might begin to teach her children about race and privilege, especially through the curating of books that they read as a family. As a parent in a family who loves books, the desire to raise children who are aware, resilient, and compassionate resonates deeply with me. What do the books on our shelves say about privilege and marginalization?

Writing as an act of privilege

How do we speak or write or read about privilege, as those who are privileged? This is a question that applies to ability/disability as much as to any other difference that might be used to marginalize people. Amy Julia wrestles with this question as she writes WPF, without claiming to arrive at a definitive answer. It is a book searching for a better way, a way that transcends political or ideological divides. “I long for a way to understand identity that allows for diversity and particularity without necessitating division,” she writes (136). Neither is this longing far removed from a mother’s heart. Some people with Down syndrome see their own disability as negative. Amy Julia recognizes that Penny “may struggle with being outside the circle of what is considered ‘normal’ when it comes to height, appearance, and ability” (135). What might an understanding of privilege and identity look like that moves beyond the expectations of normalcy to a frame where Penny is able to integrate her differences into her identity, without being defined by the prejudice or misconceptions of those around her?

A good deal of WPF works through Amy Julia’s relation to race and identity, a topic you can read more about at “I Grew Up with Black Household Help,” an excerpt from chapter three featured over at CT Women. She raises crucial questions. The word “intersectionality” is often used to talk about the way issues of race, gender, sexual orientation, disability, nationality etc. intersect in people’s lives to define privilege or the lack thereof. The principles Amy Julia explores apply in various ways to all of these categories and labels. I would suggest this is because, as much as we are defined by and often limited by the descriptions we and others place on ourselves, the question of “who we are” or perhaps, “whose we are,” intertwines with and yet goes deeper than these definitions. Amy Julia calls on precepts of theological anthropology to traverse deeper paths than often permitted in one’s average Facebook newsfeed.

Writing as an act of confession

The primary purpose of WPF “is to confess, an act that has two distinct meanings. One, to admit guilt. Two, to acknowledge truth” (188). Confession, in this way, is a profound and subversive act in a time when to confess is to abdicate truth-telling. Those of us who are complicit in systemic injustice are seen as having no right to speak to the truth – a modern conception of truth that understands it to be entirely relative. Yet, in the act of writing this book, Amy Julia points with humility and gentleness to a kind of confession that refuses to only be part of the problem. It is possible to both acknowledge complicity and to work towards a better, more truthful, future. This requires both the sociological and the theological. It requires an awareness of current trends in social justice movements and a sensitivity to modern (or post-modern) thought, alongside a firm commitment to a Truth that can be embodied in any time and place, a Truth that transcends political or ideological divisions.

Becker writes that it was Penny’s disability that “heightened my awareness of obstacles, negative assumptions, and social barriers I had never encountered before” (xxi). Even with her personal experience as the mother of a child with a disability, Amy Julia’s gentle and unassuming posture is not without potential controversy as she wrestles with privilege. Holding out hope in a time of jaded ideologies is a revolutionary act. Here, she bravely posits, “the only adequate response to the ruptures within or culture is a mutual one, one in which people from different backgrounds are willing to work together… The only way healing can happen is if the people who have been excluded and marginalized are willing to forgive and trust people like me” (xxi). Becker isn’t claiming a right to forgiveness; rather, she gestures there as a way of potential, a way of moving forward. “Privilege harms everyone,” she observes. Not that all are equally victims or oppressors, but in WPF Becker hopes to “prompt the questions we are afraid to ask, and to lead us away from fear and toward love, in all its fragile and mysterious possibilities” (xxii).

Two types of privilege

Throughout this book, Amy Julia isn’t afraid to be vulnerable about her own struggles and shortcomings. “Penny has helped me to recognize my own neediness, my own limitations, my own humanity,” she writes (10). She relays her struggles with Penny’s diagnosis, her disordered eating habits, and confusion surrounding her own privilege. These issues are not disconnected. Privilege, as it is often considered, “correlates with some of the shadows of the human experience-eating disorders and anxiety and substance abuse, among others” (93). The god of privilege is not all we worship it to be: “The rich are the least likely to experience the security of deep social connectedness,” for example (91). The wall, or fence, of privilege, is “a many-centuries-long creation that offers protection and opportunity while also cutting us off from the richness, diversity, and fullness of life” (81).

Quote about White Picket FencesUltimately, Becker asserts that hierarchical privilege must not have the only or final say in our lives together. “I am starting to believe that both must be true,” she writes, “that I can hate the injustice and name the goodness of my life” (39). This is a significant truth-claim. Amy Julia points to this kind of privilege, as it is commonly understood, as distorting our humanity. Instead, privilege truly deserving of the name is one based on our shared humanity rather than division. In her times of hardship, such as when she cared for her mother-in-law through the final stages of cancer or in conversations with new parents of kids with Down syndrome, Amy Julia discovers a different kind of privilege. “It was the privilege of being singled out for something purposeful, being the undeserving recipient of the gift of human connection” (129). In these moments, gratitude overcomes us at “the undeserved moments of beauty and grace and purpose that connect instead of divide” (130). Social privilege based on wealth, education, or ethnicity (as examples) is not the end of our story. “The real privilege of my life has come in learning what it means to love others, that love involves suffering and sacrifice and sleepless nights and tears and heartache and great gifts,” Amy Julia writes. This is a “privilege that connects instead of divides, that shimmers through the air like a line of light, available if only we stop counting the coins and look up” (131).

Nothing in this book is intended to discount the real, significant, and harmful impact of social and hierarchical privilege on many aspects of modern society. Quite the opposite. However, Amy Julia points to the possibility of hope in an age when conversations break apart and hope is increasingly seen as utopian. Is love “the only lens that matters when it comes to our knowledge of other human beings?” (155). Like White Picket Fences, I don’t claim to have all of the answers. But I think that reading Amy Julia’s latest book is a good place to enter into the conversation.

 

About Keith Dow

Husband, father, and thinker serving people with exceptional needs in Canada's capital and throughout Ontario. Connect with Keith on Twitter or LinkedIn.

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