How Disability Changed What Easter Means to My Family

Before our daughter Penny was diagnosed with Down syndrome at birth, I didn’t know I was biased against people with disabilities. But gazing into my baby’s deep blue eyes and hearing the words “intellectual disability” and “developmental delay” brought up a host of emotions I never expected to confront with the birth of our first child. Grief. Shame. Fear.

I didn’t have any friends with disabilities. Academic learning was something I valued. Measurable accomplishments, efficiency and productivity gave me a sense that I had purpose and worth in this world. My perception was that life marked by slow development, greater vulnerability, and obvious needs meant I had less value, and a more uncertain life purpose.

American culture with its emphasis on individual accomplishment contributed to my implicit assumptions regarding a hierarchy in human worth. My Christian faith was also affected. When Penny was born in 1999, I was at Princeton Theological Seminary as a student. What I learned in church seemed echo the message that my culture gave me about disability being a problem that needed to be fixed.

One Sunday morning, when two well-meaning men prayed that Penny would be “healed of this evil Down syndrome,” I recoiled internally but muttered Amen. Alternately, when people with Down syndrome were called “angels,” I wondered whether the saccharine sentiment betrayed an inability to see children like Penny in their full humanity, with their flaws and blessings. While I began to see that Penny wasn’t more broken than me, other Christians spoke of her need for healing like mine.

In the Bible’s stories, there were many examples of persons with disabilities reduced to their problems. Jesus is able to heal people, as he has done so many times. Blind people can see. Deaf people hear. The blind can hear. Within a matter of seconds. They were as though their bodies had been broken and that they needed to be restored by a cosmic miracle worker.

But then I learned that the word Jesus uses to say that a blind man has been “healed” is the same word Jesus uses when a woman falls at his feet with gratitude because she has been forgiven. The same word is used to describe Zaccheus, who has lost half his possessions and a man who has had his leprosy vanish. These cases all have the same root word. sozo, reflects comprehensive restoration. It is a word implying that Jesus’ understanding of healing has to do with our entire beings—our bodies, minds, emotions, and souls.

I also began to notice that while Jesus’ healing demonstrates incredible compassion for individuals, it is not individualistic. Jesus does heal a man who had a severe cut on his hand, and also heals someone who’s been bleeding for 12 years. He makes it a point to present them both to religious authorities in order for them be integrated into society. These actions prompt the question—was the problem in the bodies of the excluded individuals? Was it in their communities?

This same question deserves consideration now. Family members with special needs children are twice as likely not to go to church than those with normal kids. Over half of special-needs parents say their child was excluded from church. And yet an overwhelming majority of parents of children with disabilities (90%) also say that the most helpful support they could find in a church community is a “welcoming attitude towards people with disabilities.” When I look at these data, I see communities perpetuating rejection, not individuals in need of fixing. I wonder whether that’s the way Jesus saw it, too.

My view of health is that it includes painless bodies and the ability to heal with biomedical treatments. John Swinton, a theologian and theologian has pointed out that biblical authors did not have the same idea of health we do in modern western society. Swinton refers to the Hebrew word Shalom The closest thing to good health. He writes, “Shalom is not the absence of illness, disease, or disability. It’s all about the presence and power of God. . . Healing always has first and foremost to do with connecting and reconnecting people to God.”

Jesus’ healings can be understood not only as a way to restore wholeness and health within individual persons, but also as a way to bring spiritual and communal restoration. He casts a vision in Luke 14 of the ones who will celebrate together at God’s table: the blind, the physically disabled, the poor. They are welcome at the banquet as they are, and their bodies do not change. They arrive at the feast as they are. The healing comes through belonging, through celebrating in God’s presence together.

The ultimate indication that Jesus’ healings are not mere expressions of ableism comes through the stories of his own death and resurrection. Nancy Eisland wrote in her pioneering work that this is how it works: God of the DisabledJesus suffers disfigurement, disability and death while he is dying on the cross. The New Testament writers claim that Jesus still carries his scars from the cross with him when he resurrects. He does not forget or erase disability when he triumphs over death. They are still there. Jesus pointed out those scars to aid his disciples in understanding who he was. The resurrected God will always be defined as disabled.

Sixteen years ago, as I held Penny in my arms in the hospital, I wondered out loud: “Is Down syndrome a manifestation of sin in the world?” I saw Penny’s condition as an instance of God’s good creation gone wrong. That was my word. The biomedical term for this is disorder or defect.

My mother was gentle when she said, “The only sin I see in Penny’s birth is in how we respond to her.”

Mom didn’t know she was offering me what scholars call the social model of disability. She didn’t know she was affirming a truth I would eventually come to recognize in Jesus’ own interactions with people with disabilities. She just knew that her granddaughter was no more the product of sin than any one of God’s creations. My journey began with her words. Her words helped me see that all of us are in need of God’s healing, and that Jesus’ healing anticipates our need to believe our own belovedness and belong to a community.

Every Christian who thanks God on Good Friday or rejoices at Easter should know that God has not made our bodies perfect. Instead, he has acknowledged the goodness and limitations of all our bodies. The God we worship is not one who changes us, but invites us to discover our love.

We worship a God that welcomes all of us to his table.

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