In her 1994 book The Disabled God: Toward a Liberatory Theology of Disability, the late disabled theologian and activist Nancy Eiesland wrote about a dream she had:
I saw God in a sip-puff wheelchair, that is, the chair mostly used by quadriplegics enabling them to maneuver by blowing and sucking on a strawlike device. Not an omnipotent, self-sufficient God, but neither a pitiable, suffering servant. In this moment, I beheld God as a survivor, unpitying and forthright. I recognized the incarnate Christ in the image of those judged ‘not feasible,’ ‘unemployable,’ or with ‘questionable quality of life.’ Here was God for me.
Eiesland’s slim volume drew on the disabled people’s movement in the United States, as well as her own and others’ embodied experiences of disability and discrimination, and it resymbolized Christ as the disabled God. Her work catalyzed the field known today as disability theology: biblical scholars, theologians and practical theologians who take seriously what disabled experiences can teach us about God.
But nearly 30 years later, Eiesland’s emphasis on God’s disability – on the crucified and risen Christ’s visible wounds – remains a startling image for the church. Eiesland imagined a world in which disabled Christians not only were being served or ministered to but were serving and ministering to others, just as Christ’s body is broken for us. Yet how many sip-puff wheelchairs do we see today at church? Let alone how many persons in wheelchairs could even get onto our raised altars, enter our adult education classrooms or preside at our session meetings?
For disabled Christians, far greater than the physical barriers to leadership are the attitudinal or social barriers to ministry. When someone is presumed “not feasible” or “unemployable” or is deemed to have a “questionable quality of life,” the church might work for their inclusion in the community but still unhelpfully disregard the roots of those injustices.
But inclusion hasn’t worked.
Decades before Eiesland, disabled folks began advocating for the accommodations necessary for them to live full lives in America, yet legislation has been insufficient for producing social change. Incomes of persons with disabilities are still 70% lower than the median income in the United States. Children with disabilities are still frequently segregated from peers despite laws against doing so. And hundreds of people with intellectual disabilities are still forced to live in institutional settings rather than communities. Yet my research shows that the church has largely patterned its ministries on secular principles of inclusion. We try to welcome people to our communities by providing services and supports – like ramps, classroom buddies and braille bulletins – that will make the community more accessible to them.
So why isn’t this working? Why aren’t disabled people flocking to the church?
For my forthcoming book From Inclusion to Justice: Disability, Ministry, and Congregational Leadership, I researched 11 church communities and heard the same thing over and over from people with disabilities: churches want to welcome people with disabilities, but disabled people want more than welcome and inclusion. They want a seat at the table. They want to grow as disciples of Christ. They want their calls to ministry to be nurtured. They want to lead communities of faith.
As Lisa, a blind Catholic lector puts it, if she is going to lead, it is going to be “all or nothing.” As Bailie, another contributor to this issue, states, the church must respect the authority of people with mental illness regarding their own experiences. As disabled rabbi and scholar Julia Watts Belser puts it, “My disabled experience might actually tell me something extraordinary about the nature of God … this disabled body knows something about God, not in spite of it but because of it.”
So what – or who – is stopping folks with disabilities from leading?
It just might be well-meaning Christians like you and me. You see, my research found that inclusive ministry in the church often takes the form of transactional ministry. Disabled Christians come to the church with both their willingness to lead and their critiques of how the church has undermined their ministry and leadership. Rather than taking the time to listen to these critiques, the church rushes to provide services that will help Christians with disabilities to gain access to their community. But this serves the church more than it serves Christians with disabilities. For one, this effort keeps institutional power intact, clustered in the hands of largely nondisabled people. Second, it keeps disabled Christians in the role of recipients of ministry rather than agents of change.
In this way, inclusion often reinforces able-bodied ministry and leadership because it mistakes disabled critique for complaining or only views it through an ableist lens of disability as a personal problem. In a January 2022 post on her blog at TalilaLewis.com, the disabled artist, lawyer and activist Talila A. Lewis defines ableism as “a system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness.” Eiesland’s image of the disabled God exposes some of the assumptions we have about ability and normalcy, assumptions that inhabit our theologies and our ministries. In the Presbyterian Church, we say we believe that God equips those whom God calls, not the other way around. But too often the requirements for church service, leadership and ministry exhibit ableist biases like the ones felt by Lisa, Bailie and Julia. Too often people with disabilities are told their accommodations are too expensive, that their ways of doing ministry need to fit in, and that their bodies, speech and minds are not suitable
Simply put, my research shows that ableism – not a lack of ramps or sound systems or braille hymnals or special education teachers – is the biggest obstacle in ministry with disabled people in churches today. That’s both good news and bad news. It’s good news because it means that nondisabled people can play a significant role in nurturing and amplifying the ministry and leadership of Christians with disabilities. But it’s bad news because we’ve got a long way to go. A long history of failing to listen to folks with disabilities means that many have been hurt badly by discrimination, both inside and outside the church, and healing takes time.
In my book, I suggest that churches make sure that they are listening well to Christians with disabilities in their churches and their communities. Rather than crafting a beautiful welcome and inclusion statement, I argue that churches need to start by hearing the hurt, the pain and the isolation that people with disabilities have experienced. I make clear that listening sessions are not a means to an end; they are the ministry. Furthermore, listening sessions are an opportunity not just for disabled people to speak and be heard but also for nondisabled people to really listen. Finally, as questions are asked (“What have your experiences of church been like?” “What do you want us to know about you and your family?” “What isn’t working for you and your family at church right now?” “What is working?” “What do you wish would change?”), the only responses listeners should give are “Thank you for sharing that,” “I really appreciate what you are sharing with us today,” “I’m really sorry to hear that was your experience,” “I’m sad to hear how you’ve been hurt by the church” and “I’m sorry that didn’t work for you.”
Such listening sessions help churches hear the laments of disabled Christians against ableism present in church and society. In churches, lament remains an underutilized form of prayer against injustice. In lament, churches risk implicating themselves as the perpetrator of injustice, and they risk hearing God implicated in that injustice too. Hence – as theologian Scott Ellington points out in his 2008 book Risking Truth: Reshaping the World Through Prayers of Lament – lament is risky.
Yet there is something powerful, faithful and necessary in hearing the lamentations of Christians with disabilities. For one, these laments often help inform and reform ableist attitudes. Although some experience pain and suffering as a result of their disabilities, our research showed that people with disabilities experience far more isolation and hurt as a result of able-bodied prejudice and discrimination. Furthermore, these laments may convict and compel able-bodied Christians and churches toward repentance. In a YouTube video on “Praying for Justice,” John Goldingay – pastor and Old Testament professor at Fuller Theological Seminary – points out that many Christians are uncomfortable with the protest psalms because they often ask God to destroy their enemies. He also argues that this is a relatively contemporary discomfort. Even Jesus, in the New Testament, quotes the Psalms — so what is it that we contemporary Christians are so concerned about?
Goldingay suggests that one reason why psalmists’ pleas for enemies to fall make us so uncomfortable is that we who are in power may be the very enemies against whom God is going to act. Yet the Psalms offer the Israelites tremendous freedom to cry out to God with the fullness of their hearts. Goldingay suggests that we Christians, if we minimize those emotions, lack the very freedom to which God is inviting us. In listening sessions, psalms are fitting prayers with which to open and close, because they make clear that the fullness of our hearts does not make us unfaithful. But they also make clear that in listening and praying alongside those who are hurting and angry, we may feel uncomfortable — and that discomfort may also be a gift from God. Discomfort may have something to teach us about our relationship to suffering. If we can truly listen with our hearts, discomfort may offer us an invitation to pray with those who suffer.
Christian congregations need to move away from a paradigm of inclusion and back toward the paradigm of justice that Eiesland had in mind when she wrote The Disabled God nearly 30 years ago. These first two steps – listening and lamenting – are critical, primary moves for able-bodied Christians who want to become allies in working for justice alongside Jesus and Christians with disabilities. But far more critical is the internal work the Spirit wants to do in able-bodied Christians as we listen and lament. In praying for justice, we will find that our assumptions about who is fit for ministry and worship need to be reformed and revised. In praying for justice, we will discover the ways in which we have subtly maintained our power over disabled siblings in Christ, even as we have purported to minister and serve. In praying for justice, we will find that justice cannot be done in our society and in our churches if able-bodied people will not repent and yield to the ministry of ministers and leaders with disabilities.
This work of recognizing and repenting of our ableism is challenging and important ongoing work for churches wanting to support Christians, ministers and leaders with disabilities. As a pastor, a researcher and a parent of a disabled child, I find it all too easy to speak for my research subjects, my parishioners and my child. But it is a far greater ministry for me to listen carefully, repent publicly and amplify the perspectives of disabled Christians and leaders. As Eiesland first pointed out, an able-bodied perspective is limited by its own vantage point. When we start to see the gospel and the church through the perspective of a disabled God, the injustices before us become clearer. So do the ways in which the Spirit is expanding ministry and leadership. I’m encouraged by churches I see partnering with disabled-led advocacy and ministry organizations, churches changing the way they do worship to support not just disabled worship participation but disabled leadership, and churches putting forth statements not only of welcome but of repentance when it comes to disability ministry.
So the next time a Christian with disabilities tells you something isn’t working for them in life or in worship, consider that theirs might be the voice of the Spirit, of God in a sip-puff wheelchair, of Christ who rose from the dead with his scars visible and valued. Consider that the person might be telling you not because the work is yours to do, but because it is your privilege and penance to listen. Consider how you might come alongside your sibling in Christ with repentance, by responding, “I’m really sorry to hear that was your experience,” “I’m sad to hear how you’ve been hurt by the church” and “I’m sorry that didn’t work for you.” Consider that lament makes space for both protest and penance and that it is worth the faithful risk, even when we don’t know where it leads. Consider that the church may just need leaders with disabilities as much as Christians with disabilities need the church. Consider that the God that Eiesland proclaimed was a God for disabled folks just might be the God for all of us. Oft judged “not feasible,” “unemployable” or having “questionable quality of life,” the incarnate Christ is a survivor God whose justice is a justice for all.