Amy Julia Recommends: 6 Books About Down Syndrome

As we near the end of Down Syndrome Awareness Month 2019, I want to offer 6 recommendations of memoirs and (accessible) theological books about people with intellectual disabilities, including Down syndrome, as a way to invite you to consider what it means to be a human being.

What connects us to one another? What distinguishes us from one another? And what do we stand to gain if we begin to believe that we are all created in the image of God and capable of giving and receiving one to another?


1. Expecting Adam – Martha Beck

2. Life as We Know It – Michael Berube

My two favorite memoirs of parents of children with Down syndrome are Expecting Adam by Martha Beck and Life as We Know It by Michael Berube. There are many other beautiful books about raising kids with Down syndrome (The Lucky Few, The Year My Son and I Were Born, and Road Map to Holland all spring to mind), but I particularly resonated with Beck and Berube. I might love these simply because they are the first two memoirs I read after Penny was born. 

Both are written by people who were in highly intellectualized contexts (Berube is a professor and Beck was a PhD student at Harvard) when they discovered they were having children with intellectual disabilities. Berube’s is filled with big ideas about philosophy and identity. Beck’s is more of a spiritual memoir about letting go of control and surrendering to the givenness of life. Both were beautiful, kind, wise guides for me into receiving our own daughter with Down syndrome as a gift.


3. Becoming Human – Jean Vanier

When it comes to the more straightforward theology of disability (neither Beck nor Berube is a Christian), I’ll narrow it down to three recommendations among the many noteworthy options: Jean Vanier’s Becoming Human is a wonderful introduction to Vanier, who founded the L’Arche communities, and his understanding of common humanity. (I also loved his book Signs, and his book in partnership with Stanley Hauerwas Living Gently in a Violent World is also well worth reading.) 

4. Adam – Henri Nouwen

5. The Road to Daybreak – Henri Nouwen

Then there’s Henri Nouwen, who is well known as a spiritual teacher more broadly. Nouwen also wrote Adam and The Road to Daybreak, both books about his experience as an intellectual priest who had taught at Yale and Harvard and discovered his own humanity as he encountered people with intellectual disabilities (who didn’t care about his intellect, just about his capacity for love) at a L’Arche community in Canada. 

6. Becoming Friends of Time – John Swinton

And finally, John Swinton’s Becoming Friends of Time, a meditation on what typical people like me, who live in the midst of the rush of modern life, can learn about living more slowly and attending to the present moment from people with intellectual disability and dementia.

I recommend these 6 books about Down syndrome for anyone who is concerned with ways of thinking and responding to problems of social justice and social divisions. I’ve found that stories and books about disability are a gentle way for typical people to enter into thoughts and stories about what makes us human. 

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  1. Gretchen Knowlton

    Thank you, Julia. This is an excellent contribution to Down Syndrome Awareness Month. I read your book about Penny when my daughter, now 13, was little and have read most of your list but will definitely check out the rest. I agree that books are a comfortable, gentle way to probe our beliefs and assumptions. Thanks for sharing this.

    1. Amy Julia Becker

      Thanks Gretchen!

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