Our daughter Penny was born into a world of social advantages. We, her parents, are married, white, educated and able to readily provide for her material wants and needs.
Two hours after she was born, Penny was diagnosed with Down syndrome, a genetic condition that occurs upon conception and often leads to health complications, physical delays and cognitive challenges. Penny joined a group of people who have faced a history of discrimination. Until the 1970s, people with Down syndrome did not have a legal right to a public education, and doctors routinely recommended that children with Down syndrome be sent to institutions.
To this day, people with intellectual disabilities are often the butt of jokes, and the mocking use of the “r-word” remains standard in comedy acts and among public figures.
Penny was born into privilege. She was also born into exclusion.
In the beginning, the injustice behind that exclusion bothered me. I bristled at the preschool director who wouldn’t consider welcoming Penny into her classroom. I recognized what Michael Gerson termed the “soft bigotry of low expectations” when doctors and friends talked about all the things Penny would never do.
I began to advocate for people with intellectual disabilities in local spaces, such as church sanctuaries, as well as in the broader public. I also began to see that the exclusion of kids with intellectual disabilities ran parallel to the exclusion of other children who didn’t come from backgrounds like ours — kids growing up in poverty, kids with physical disabilities, kids who receive negative expectations based upon the color of their skin or their ethnic background. All of these kids were vulnerable to the injustice of exclusion. Penny’s situation opened my heart to advocate for opportunities for all of them.
But something else happened as I got to know my child. I stopped wanting Penny, and other kids like her, to be shoehorned into my world of privilege. I began to see Penny’s life as an invitation to step out of my fenced-in existence. I read theologians of disability, such as Jean Vanier, Hans Reinders and Henri Nouwen, who wrote about vulnerability as a gift we give one another, a way of expressing our humanity through love and through recognizing the inherent value of every human.
I witnessed that value through the young woman with Down syndrome who had few words and a healing presence, through the young man who always remembered what people asked for in prayer at church the week before, and through the way Penny laughed at herself and encouraged others. I saw the value in what happens on the margins of society, in the midst of neediness and even suffering. I saw the value in prizing community over individuality, in championing compassion over productivity and in honoring humility and patience and love.
As a Christian, I look back on Jesus’ ministry and see in the Bible the ways that what we call privilege also led to harm in his day. In contrast with the social norms of his culture, Jesus affirmed the value and inclusion of powerless people such as widows, children and social outcasts.
In Mark 5, for instance, Jesus not only offers physical healing to a destitute, desperate, “unclean” woman but also publicly restores her to community and social standing by calling her “daughter.” Liberation theologians and many Christians concerned with social justice rightly point to Jesus’ emphasis on caring for the people on the margins of society.
And in that same passage from Mark 5, Jairus, a synagogue ruler, also approaches Jesus. It’s easy to imagine that Jairus is the very man who cast this “unclean” woman out of the synagogue. Jairus is the privileged one, the one with the power to oppress and perpetrate injustice. Jairus also needs help. And just as Jesus offers affirmation and healing to the nameless and impoverished woman, he offers healing to Jairus.
Jesus never talks about privilege, at least not in the terms we use. But he invites us to recognize the harm of injustice and exclusion. He invites us to reach out to God and to other people for help in knowing how to respond. He invites us to participate in individual and collective healing.
When Penny was born, I confronted the reality that I had ignored, denied or not even known about the exclusion of people with disabilities. It was a painful process to admit my own bias and to come face-to-face with the way my daughter might be treated.
Doing that work also opened me to receive the gift that God gave me in the person of our daughter. It opened me to see the gifts of other vulnerable people and to admit my needs. It exposed the harm of privilege and invited me to explore a new landscape of love.
Amy Julia Becker is the author of books including “White Picket Fences: Turning Toward Love in a World Divided by Privilege.”