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Every summer our family of five travels to Nauvoo, Alabama, for one week. It’s an unusual decision—we leave the relatively cool nights and sunshiny days of July in Connecticut for the muggy backwoods of northern Alabama. We make this inconvenient and expensive journey because our week at Hope Heals camp gives us a glimpse of the kingdom of God.
Hope Heals camp is a space for families affected by disability to gather for teaching and community and belonging. The five hundred or so people in attendance span a wide spectrum of needs. There are people with Down syndrome, like our daughter Penny. We meet children with rare genetic conditions and parents who are recovering from strokes and blind teenagers and autistic tweens. We also meet lots of people who appear to be typically developing. Hope Heals brings out our vulnerabilities in a way that blurs the lines between disabled and able. The blurring is part of the beauty.
Last summer I was walking toward the chapel alongside Mary Austin Hall, a Hope Heals staff member. “Amy Julia,” she said, “I need to apologize. I feel like I’m being selfish. I keep seeking Penny out because I enjoy her company so much.”
Her words took me by surprise. I got choked up when I responded: “No one has ever said that to me before.” I reassured her that it was a tremendous gift to Penny to be needed and wanted the way she is at Hope Heals. Mary Austin was one among many who gave Penny the gift of delighted attention. She offered a sense of love and belonging that Penny doesn’t often receive in the hallways of her high school.
But Penny wasn’t the only one who benefited in this exchange. Mary Austin had just suffered a second-trimester miscarriage. Penny didn’t know about her grief. Mary Austin didn’t know about Penny’s loneliness. Still, they met each other in the midst of their mutual need. They gave to each other without words.
Penny didn’t know about her grief. Mary Austin didn’t know about Penny’s loneliness. Still, they met each other in the midst of their mutual need. They gave to each other without words.
The anecdote I share here is a small one, but it points toward a larger story of possibility for the body of Christ. For the church to serve as the hands and feet of Christ in the world, we need people with disabilities to partake as full and equal members. We also need to look to people with disabilities to give us a richer and fuller understanding of our common embodied humanity.
In a recent interview with Krista Tippett for the podcast On Being, author and designer Sara Hendren talks about her son Graham, who has Down syndrome, and the ways in which Graham’s presence in their family has prompted a greater sense of interdependence. Hendren reflects on how our society has reached a point of “peak independence.” We construct our spaces and schedules to prioritize individual autonomy and deny the particular needs of those whose bodies and minds do not conform to the norm. We have also reached peak levels of loneliness and despair. Hendren suggests that these two go hand in hand. The more we insist that our value comes from our usefulness and individuality, the more we deny a constitutive truth of our humanity as dependent creatures.
People with disabilities often live with obvious needs. These needs might entail assistance with mobility or communication. People with disabilities are perceived as particularly vulnerable. And indeed, the rates of sexual and physical abuse of people with intellectual disabilities are far higher than the general population. Many people with disabilities are immunocompromised, with vulnerability to illness. And people with disabilities are often keenly aware of their limitations. As Amy Kenny explains in her book My Body Is Not a Prayer Request, the physical demands of living in her body take a lot of energy. She talks about energy in terms of “spoons.” There are days when there just aren’t enough spoons.
Still, our culture uses the language of special needs to describe what amount to very typical needs. The need for mobility. The need for meaningful work. The need for friendship. Shelter. Education. Community. When we use the word “special” to describe basic needs, we deny our shared neediness. Moreover, those of us in typical bodies and minds can easily reduce people with disabilities to this position of need rather than understanding neediness as one common aspect of our shared humanity. As the authors of Disabling Leadership write, “disability can be a door into recognizing that human limitation, rather than human strength, is the space in which the leading of Jesus is made known.”
People with disabilities are not simply needy. They are also gifted. They are people within whom the Holy Spirit dwells. They are called to participate in God’s work in the world. Paul’s description of the body of Christ in 1 Corinthians 12 reminds us that each member of the body brings a particular gift and manifests the Spirit of God in ways that the entire body needs. We not only have needs; we need one another. We are not only dependent; we need interdependent relationships of mutual giving and receiving in order to flourish.
People with disabilities are not simply needy. They are also gifted. They are people within whom the Holy Spirit dwells.
There’s a story in Luke 14 where Jesus attends a Sabbath dinner at the home of a “prominent Pharisee.” Jesus isn’t a very polite dinner guest. The first thing Luke records is that Jesus enters the room and promptly critiques all the guests for sitting in the wrong seats. Then Jesus turns to the host and tells him that he has invited all the wrong people to his party. Although both rebukes must sting, Jesus’s words also invite his companions, and us, to a different way of being in the world. Jesus invites us to move away from the transactional relationships and hierarchical posturing embodied in that dinner. He points us to a way of giving and receiving with lives of mutual interdependence and celebration.
In his first critique, Jesus tells all the guests that they are sitting in the wrong seats: “When he noticed how the guests chose the places of honor, he told them a parable. ‘When you are invited by someone to a wedding banquet, do not sit down at the place of honor.’” These guests are trying to prove their value to the host by positioning themselves at the top of the social ladder. Jesus says, “When you are invited, go and sit down at the lowest place.” At first it seems that Jesus simply tells them they are thinking too highly of themselves and need to learn proper humility. But then he explains that when they go to that low place, it allows the host to invite them to move up into a higher position. In other words, the problem is not that they want to be in a position of honour; the problem is that they think they need to put themselves in that position rather than wait for an invitation.
I thought about this passage during the talent show at Hope Heals camp last summer. Penny performed alongside a dozen or so of her peers. We sat in the audience and cheered for young adults who sang Disney songs, a teenager who hula-hooped, and a little girl who played the piano. It was beautiful and glorious to see the performers—those who are usually in a “low place” within our world’s hierarchies—lifted up by the cheers of the crowd. I was especially struck by a group of middle school boys who were leading those cheers. Typically, middle school boys lift themselves up by putting others down with insults or cold shoulders. But that night at the talent show, these boys could not have been more sincere in rallying everyone around them to celebrate those onstage. All of us were caught up in the energy and excitement. All of us felt the joy of the celebration. We all were invited into a different way, where we needed one another and celebrated one another.
In Luke 14, Jesus offers a second critique, this time toward his host. This is where Jesus tells him he has welcomed all the wrong people to the party. Again, Jesus’s rebuke contains an invitation. The host should have invited “the poor, the crippled, the lame, and the blind.” He should have invited the last and the least, the ones who never get invited to parties, the ones on the margins of everything, the ones who know they cannot compete for status or position, the ones who know they are needy and vulnerable. Then Jesus explains why those people should be invited: “You will be blessed because they cannot repay you.”
We might expect Jesus to say that the host should invite the people on the margins in order to mirror God’s kindness or goodness or love. We might expect him to talk about doing justice and overcoming oppression. But he doesn’t. He says that inviting the marginalized to the table will be a blessing. Just as putting ourselves in the lowest place will lead to exaltation of a different kind, inviting the lowest people will lead to a different way of being. A way of blessing.
The host will receive blessing precisely because these guests cannot repay him. Instead of a transactional relationship of buying and selling seats at their respective tables and favours within their respective businesses, he would enter into relationships of giving and receiving, of mutual blessing. When Penny and Mary Austin connected in the midst of their loneliness and pain, they blessed each other.
I’ve now lived with a daughter with intellectual disabilities for nearly two decades, and I have heard many stories of mutual blessing, of reciprocity, of giving and receiving. One famous example of this type of transformative interdependence comes from Henri Nouwen’s time at L’Arche. Nouwen moved from a position as a professor at Harvard Divinity School to what he initially perceived as a position as a caregiver for Adam, a man with profound disabilities. Nouwen offered his assistance with Adam’s physical needs—bathing, getting dressed. He received from Adam the gift of unconditional love. Countless others have testified to the mutual gain of living in interdependent communal settings. Other members of L’Arche communities as well as people living in inter-ability spaces like Friendship House at Western Seminary or Duke Divinity School bear witness to the mutual blessing that comes from disregarding the social hierarchy that equates intelligence with value and social power with significance.
This way of mutuality and interdependence is available to all of us, and yet entering into spaces of interdependence will look somewhat different for people with and without disabilities. For disabled individuals, need, vulnerability, and limitations are always present and, if anything, overly acknowledged by the world around them. People routinely address me with the assumption that Penny cannot speak for herself, without first trying to engage her in conversation. As her book title, My Body Is Not a Prayer Request, suggests, Amy Kenny has had countless people approach her to pray for her healing, as if they know her needs simply by looking at her body from afar. Disabled individuals will be able to enter into relationships of interdependence only when they are seen as both needy and gifted, limited and capable. Moreover, it’s a truism within disability circles that many adults with disabilities have two sources of social relationships, the two p’s: paid caregivers and parents. For relationships of interdependence to flourish, people with disabilities need opportunities for friendships to develop in schools, workplaces, and faith communities.
This way of mutuality and interdependence is available to all of us, and yet entering into spaces of interdependence will look somewhat different for people with and without disabilities.
Typically developing people, as Jesus suggests in Luke 14, need a reorientation toward social status to experience the reciprocal relationships of interdependence that characterize the kingdom of God. For those of us who find ourselves in social positions that align with the host, or with the initial guests at his party, interdependent relationships of mutual giving and receiving will take a different shape than they will for the people who have been excluded from the party.
I recently heard a staff member of a disability organization exhort an audience to welcome people from the outside into the centre. He implied that this type of welcome simply required a wave from people at the centre to people on the margins. But as Jesus’s parable indicates, the way to get people on the margins to the table requires transformation. First, the host experiences rejection by the people initially invited to the party. Then he goes out to the margins to invite the poor and the disabled to come in. Without making Jesus’s story into a prescription for action, we can nonetheless use it to consider how we might move from a social system that prioritizes hierarchy to one that prioritizes shared community and interdependent relationships.
First, the host needs to stop seeing his party as a way to gain social standing and see it instead as a celebration. His sense of self must shift for him to extend welcome to those who cannot pay him back for the invitation. He needs to see himself as free from the demands of social posturing and open to relationships with his unknown neighbours. He needs to see himself and others as inherently beloved, vulnerable, gifted, blessed. For us, this shift might begin with social rejection. It also can begin with contemplation. We are invited to the interior work of prayer that receives God’s faithful and enduring love. To stop proving our worth and scrambling to fulfill the expectations pressing in on us by a world of productivity and busyness, we need to know that God leaves the centre to seek us out, to welcome us to his table. We need to know ourselves as the ones God lifts up, the ones God loves.
Second, the host needs to identify himself with people who cannot pay him back. God identifies himself throughout the Bible as the one who stands with the orphan, the widow, the poor, and the foreigner. Jesus tells his followers that they will find him in the imprisoned, the sick, the hungry, and the naked. We find ourselves within God’s way of being when we experience regular proximity and relationship with people who cannot pay us back for our time or our attention, and when we recognize that we have not only gifts to offer but needs that will be met through those relationships. On a pragmatic level, this type of shift means that our churches become spaces where neurodivergent kids who make unexpected noises during the liturgy are welcomed, not simply tolerated. It means that disabled adults within congregations are considered for positions of leadership because of their spiritual experiences and communion with God, not because of their ability to contribute to the church coffers or strategic planning efforts. It means disruption. It means slowing down. It means assuming that every person has something to offer that the rest of the body of Christ needs.
Far too often, our churches look like the dinner party that Jesus critiques, in which the prominent religious leaders elbow their way to the head of the table and ignore the people left outside. But Jesus invites us to a different way, a way of blessing instead of payment, a way of celebration instead of competition, a way of interdependence instead of independence. And for the person who begins in the social centre with some measure of status or authority, this way of blessing starts with an experience of rejection. But it ends with a party, a celebration, a foretaste of the kingdom of God.