Screenshots in Real Time: Theology, Ministry, and Disability
It wasn’t that long ago, 40 years to be exact, that there was hardly any theological thinking about disability in “mainstream” circles. Most clergy involved were chaplains in institutional settings. Disability was primarily understood through a medical lens rather than as a social construct. Supports were delivered under rubrics of “specialized” services: education, occupational therapy, psychology, social work, rehabilitation, and other fields where great advances were made. Yet advocacy for public services had one unintended consequence—it sent the signal that you had to have specialized training to be in relationship with people with various kinds of disabilities.
There are still too many stories from people with disabilities about wounding public experiences in churches where they have been pushed into faith-healing rituals which, in every case I know of, did not work, and in fact pushed them out of faith.
In relatively short order, the Americans with Disabilities Act was passed and signed in 1990, with the armless Rev. Dr. Harold Wilke providing a stirring invocation on the South Lawn followed shortly by the famous moment when President George H.W. Bush figured out that the only way he could give Harold a pen was by placing it between his toes. The ADA was a major step, but the history of its passing included the shameful advocacy by many religious groups to be excluded from its provisions, a fact that only added to the distrust toward faith communities in many disability advocacy circles and in the nascent academic arena of disability studies. The 1990s also saw the publication of Nancy Eiesland’s seminal book, The Disabled God: Toward a Liberatory Theology of Disability (Abingdon, 1994) and the beginnings of what is now the Journal of Disability and Religion.
In 2000, advocate Ginny Thornburgh and the National Organization on Disability, along with faith and disability organizations like Joni and Friends, led a Congregational Accessibility Campaign seeking to enlist 2,000 faith communities committed to become fully accessible and inclusive. In 2010, the first annual Institute on Theology and Disability was held in Pennsylvania, drawing together as faculty key scholars who were beginning to address theology and disability more systematically: among them, Amos Yong, John Swinton, Hans Reinders, Darla Schumm, Tom Reynolds, Julia Watts Belser and Ben Conner along with Erik Carter, the emerging leader of research in matters of faith and disability from the disciplines of the social sciences and special education. In 2009, the movements within Judaism together established a collaborative Jewish Disability Inclusion and Awareness Month in February which continues to attract more synagogues and agencies from around the world each year to sponsor some form of educational program of their choosing.
Of course, such brief screenshots of each decade leave out the gradual but ever-growing commitment of many congregations, faith leaders, family members, and people with disabilities to work towards full accessibility and inclusion for and with people with disabilities in all aspects of congregational life. One of the ironies of 2020-21 was that every congregation in the country had to work on making its life accessible and inclusive to all when Covid shut people out of sanctuaries. In a flash, everyone experienced the status of being a “shut-in” or “shut out,” which had been the experience of many people with disabilities for years. Zoom worship became accessible to all with an online connection. In the circles I know, though, the wonders of the internet have made us realize once again the power of being together as bodies in the body of a congregation: to sing, pray, worship, learn, socialize, recreate, and serve together. As someone in our church said last Sunday in our Zoom breakout group, “I just want to see you in the flesh.” The desires of people with disabilities and their families are, in fact, just like everyone else’s.
Where are we now? As the virus recedes, let’s hope people of faith across the spectrum will be poised to bring more vision and energy than ever before to welcoming and including everyone who wants to come. When this happens, the conversations may change over time as they have in the academic and advocacy arenas of faith and disability. The ADA was about rights, but those advocating for more welcoming congregations have had to tap their respective faith traditions for scriptural and theological mandates for inclusion, the most primary one being the phrase that is on most congregational signs or websites —Everyone’s Welcome—or the ancient call to welcome the stranger, in whatever form that stranger appears, along with the belief in the imago dei in every person. What’s more, legal rights—making a building accessible, for instance—help get people with disabilities into public places but do not guarantee them welcoming relationships that enable full inclusion. Inclusion, in turn, does not necessarily mean a true sense of membership and belonging. The best new vision of belonging comes out the work of Erik Carter and colleagues, who used the data from a research study of more than 500 families to understand, among other things, what belonging would mean to them. Carter’s research identifies 10 dimensions of community belonging: being present, invited, welcomed, known, accepted, supported, cared for, befriended, needed, and loved. The power of this model is that it could help faith communities understand the dimensions of belonging for people no matter what their identity or “label”—it offers a wider vision of hospitality and belonging for everybody.
Wherever a congregation may be on this journey, there are now tools that support their inclusive ministries. The number of books on faith, theology, and disability has exploded. Writings by family members and people with disabilities chronicling their spiritual
sojourns have proliferated. Materials for enhancing congregational ministries exist in almost every denomination or faith. Online archived lectures and webinars abound. At least two Christian seminaries now have certificate programs in ministries with people with disabilities and their families, others are integrating courses, or, even better, infusing theological and pastoral issues related to disability in ongoing course offerings. Disability, as one form of diversity, belongs in every theological discipline.
The challenge now is not a lack of written resources or consulting organizations but rather the will, vision, and commitment of a congregation. The clergy do not need to lead it, but they do need to bless and support it, along with other leadership entities in the congregation. And when they do provide their support, the creativity unleashed in congregations is, in my experience, impressive. Beyond inclusive worship, religious education, and programming, congregations have taken the lead in respite care, supported housing, recreational opportunities, advocacy help, inclusive pre-school, social opportunities, assistance with finding jobs, models for long-term support, music and arts, family and parent support, sibling support, day programs (including ones for seniors with dementia), and mental health supports, and the list goes on.
However, it is not all milk and honey. All the seeds sown do not sprout and grow. There is still lots of rocky ground, and old obstacles and habitual prejudices can emerge in new ways. For example:
• Language—As is true in other cultural discussions of identity, language matters. Most people I know prefer the word “disability” rather than others they consider to be euphemisms: differently abled, special needs, etc. Best practices usually mean refraining from identifying a person by a single label that gets seen as their defining story. Many prefer “person-first” guidelines that encourage saying a “person with (name the disability) rather than making the adjective the noun, e.g., the disabled. But not always: growing numbers of “disabled” communities are reclaiming stereotyped labels as positive forms of identity, e.g., deaf is a culture; “I am autistic, you are neurotypical”; “We are blind.” Even better practice means asking a person what form of language they would like used. They will usually start with, “my name.” Correspondingly, developments in language are also reflecting a commitment to see the gifts of every person, not simply “needs” or “deficits.” Steve Silberman, autistic author of one of the foundational books on autism, sent a tweet (8/26/2021), which is now a meme, noting, “I never use the phrases ‘high-functioning’ and ‘low-functioning.’ As an autistic woman told me, ‘If they call you “high functioning,” it means your struggles are invisible to them. If they call you “low functioning,” it means your gifts are invisible.’”
• Healing vs. Cure—Ask almost any person who uses a wheelchair, and, if you are trusted, they will tell you about strangers coming up to them and wanting to pray over them for their healing. They delight in a story I share from the Rev. Wilke in which a man in a chair was approached by a stranger saying, “My brother, if your faith was strong enough, you could be healed.” Whereupon the man in the chair replied, “My brother, if your faith was strong enough, you could cure me.” Suffice it to say, there are still too many stories from people with disabilities about wounding public experiences in churches where they have been pushed into faith-healing rituals which, in every case I know of, did not work, and in fact pushed them out of faith. Erik Carter found in his research of families that one-third of them decided to leave a faith community because of negative experiences there with their children. In some cases, the families were asked to leave, usually because of behavioral problems that disturbed notions of worship or tested the skills of religious education leaders. Most people with disabilities accept that their disability cannot be cured. Instead, they seek healing—healing that comes in welcome and appreciation for them as unique and gifted persons, in whatever setting.
• Diversity and Social Justice—There is a growing affirmation that disability is simply another form of the diversity of humankind. There is, one might say, “disability” in all forms of God’s created life. Not all animals or plants of any species are “the same.” Nor then should disability be understood theologically as one form of brokenness any more than any other form of limitation or vulnerability. There’s a deep irony in the many movements to empower and respect other kinds of diversity in humankind: people with disabilities are often marginalized and stigmatized in those communities. People with disabilities are too often devalued minorities within all minorities (and majorities). Further, as a society creates systems of support and help for minorities of many kinds, such as people who are homeless, abused, unemployed, sick, victims of crime or poverty, we often fail to see that many people with disabilities are inordinately affected by those issues as well, and suffer from disparities in service and support compared to others. A mother once told me that when she moved into a new town from out of state, it took more than 50 calls to find a doctor who would take her adult son who was disabled. Many parents and self-advocates with multiple disabilities dread having to go to hospitals for any form of illness because far too often their disability gets in the way of what should be treated. Disability may call for medical supports, but it is not an illness, and proper medical care shouldn’t be impacted by outmoded cultural assumptions about quality of life by doctors and nurses.
The challenge here is to recognize that there are people with disabilities who need the same social justice supports as anyone else. Starting a food kitchen: is it accessible and are people with disabilities welcome? Working with people who are homeless: how many of them struggle because of mental illness? Affordable housing: does it include accessible apartments and places where people with disabilities who need supports can find a home? Far too often, disability is regarded as simply a unique area of need that should be handled by public disability services rather than included in more generic supports.
Finally, let me underscore the importance of listening to people with disabilities and their families. Hearing well helps people find their voices. Those voices are beginning to say more clearly, “As people of faith, we hear God’s call as well. We would like to give as well as receive. We would like opportunities to lead and contribute if that is where we feel called. Some of us feel called to ministry and want to go to seminary and to minister as well. Can you guide and affirm our gifts as you do with anyone else, and give us the opportunity to follow our sense of vocation and calling?” To speak in Christian terms, each part of the body of Christ is connected to the others, with gifts and needs. But as ethics professor Brian Brock so profoundly says in his book Wondrously Wounded: Theology, Disability and the Body of Christ (Baylor, 2019) people don’t know they have gifts until they are received. Most clergy who have disabilities must struggle to overcome the barriers and stigma that they encounter. The tendency to stigmatize is an issue for all of us.
But when we listen carefully and respond, the serendipity is that new inclusive practices benefit others in addition to members with disabilities. Universal design for religious education helps all kids. Accessible buildings help older people and parents with strollers. Inclusive worship can become more participatory and use all the senses to communicate. Dan Aleshire, former executive director of the Association of Theological Schools, told me that he once preached in a friend’s congregation which was very inclusive, and had a significant number of people present with various forms of disabilities, including some from group homes sponsored by the church. Before he spoke, he thought to himself: “All the people of God have finally showed up.”
Bill Gaventa is a faith-and-disability consultant, trainer, speaker, and the author of Disability and Spirituality: Recovering Wholeness (Baylor, 2018). He is founder and director emeritus of the Institute on Theology and Disability (theologydisability.org).