This Sunday we mark the 25th anniversary of signing the Americans with Disabilities Act into law. While many organizations have been organizing to celebrate this significant event, one of the most visible efforts has been the ADA Legacy Tour, a traveling bus laden with displays and photos of the history of the disability rights movement. A couple of months ago, I had the privilege of seeing the ADA Bus while attending the Summer Institute on Theology and Disability, this year hosted by the Center for Leadership in Disability at Georgia State University in Atlanta. I spent a long time reading about the early origins of the movement, from the 19th-century efforts to educate people born deaf and blind, to the post-World War II concerns for veterans and children living with disabilities, to the accessible bus protests of the late 60s, to the signing of the ADA itself. It was a powerful moment for me to see images of people chaining their chairs to busses or crawling up the capitol steps. To hear the stories directly from several activists who were there, who risked their own bodies for things we now take for granted — curb cuts, ramps, accessible bathrooms — was profoundly moving.
At the same time, my experience speaking with these activists and listening to the plenary speakers at the institute was convicting. Despite being among a couple hundred other people that want to bring theology and disability together, who are also deeply invested in making sure inclusive practices flourish in our faith communities, the ongoing tensions between churches and disability activists were still very much an open wound.
The Collaborative on Faith and Disability puts the feelings plainly:
In the passing of the ADA, the religious communities of the USA essentially asked to be excused from the table. For a number of reasons, the act exempted faith communities from parts of the ADA even though it does impact new construction and some congregational programs. Whatever the rationale, and in spite of great progress in inclusive faith communities since 1990, that action confirmed the feelings of many people with disabilities that the religious community was not an ally.
This sense of alienation was not always the case. Joseph P. Shapiro’s No Pity (which gives a historical overview of the disability rights movement) describes a seminal moment in ADA history: a month-long sit-in staged by disability activists at the headquarters for the Department of Health, Education, and Welfare in 1977. The story behind the sit-in begins four years earlier, when the 1973 Rehabilitation Act included, for the first time, a non-discrimination clause related to “handicap” in Section 504 of the bill. When HEW realized the true monetary cost that this would entail, HEW Secretary Joseph Califano attempted to issue revised regulations for the bill that would have placed the clause in jeopardy. In response, several sit-ins were staged at HEW offices across the country on April 5th, 1977. Most dissipated in 24 hours, but in San Francisco about 50 of the initial 120 activists remained for almost a month. Shapiro describes the scene in almost eschatological terms of community, feasting, and celebration:
…food donated by a local Safeway store, Goodwill Industries, McDonald’s, unions, and civil rights groups was prepared by the Black Panthers, including an Easter dinner of meatloaf, green beans, and mashed potatoes that arrived steaming and covered in tinfoil. Several priests lived with the demonstrators to help out with everything from preparing food to doing pastoral counseling and celebrating Easter Mass. A rabbi came in to lead a Passover seder…
On April 28…Califano caved in to the protest that showed no signs of diminishing and signed the regulations, without changes. And on April 30, the protestors marched out together in victory — thrilled to have won, but bittersweet at seeing their idealized disability city come to an end. They left singing “We Have Overcome.” (pp. 67-69).
When I read Shapiro’s book, I was struck by the dissonance between the 1977 story of closely bound collaboration, and the sense of distance that existed by the signing of the ADA in 1990. Shapiro’s description — the sharing of food, of faith, of joy — echoes the kind of church that Nancy Eiesland writes about in her book, The Disabled God: “a communion of struggle” (p. 108). For Eiesland, this way of talking about church means “we are called to be people who work for justice and access for all, and who incorporate the body practices of justice and access as part of our ordinary lives.”
The body practices of justice that are visible in the story from 1977 are harder to see today. Yes, twenty-five years after the ADA, it is true that many faith communities have made great strides in inclusion. L’Arche, for example, is a faith-based community of inclusion that has had a global impact. As early as 1978, the USCCB had written a pastoral statement concerned with inclusion, and their 1995 Guidelines for the Celebration of the Sacraments with Persons with Disabilities is under revision, with hopes for publication in November 2015.
The problem is that in spite of these large strides seen from the proverbial bird’s-eye view, the place where legislation like the ADA, or even the USCCB provisions, really makes an impact is in particular communities. The ideals of inclusion expressed in these documents must be expressed and grounded — daresay, incarnated — in our local parishes and faith communities. The peculiar challenge of having a disability is that it often makes the most quotidian, everyday events difficult: eating, going to the bathroom (especially in a public space), moving in and out of doorways. And so it is in these everyday places, our churches and schools and community centers, that obstacles of inaccessibility still persist, and continue to exclude people with disabilities.
There are hard questions for us to ask: How many of our churches have ambos that someone in a power chair could access? How many of our altars have ramps for our (very much aging) clergy to use when they celebrate Mass? How many of our Catholic schools are adequately equipped to serve students with learning disabilities, or to mainstream students with Autism, Down Syndrome, or other kinds of intellectual and developmental disabilities?
These examples of accessibility to physical space and resources are just the beginning, and they are often compounded by ableism in our culture and theology alike. We have to overcome a persistent perception that a disability is reducible to a physiological problem in a body. In fact, one of the most valuable contributions of the disability rights movement was a conceptual difference between the existence of a physical or mental impairment, and the social disadvantage that impairment causes, namely, a “disability.” This means that disabilities are the result of social exclusion and disempowerment — they aren’t an individual’s problem, they are a community’s problem.
I do not want to gloss over the difficulties entailed in living with a disability. Disability is an incredibly varied phenomenon, and it is important not to ignore this diversity. But we can recognize the differences between someone who is Deaf, or in a power chair, or has Down Syndrome, and still name these experiences as disabilities precisely because they all result in profound social marginalization and devaluation.
This “social model” of disability prompts us to recognize our common human vulnerability. In a sense, we are all “temporarily able-bodied”: birth, an accident, aging, all these can cause temporary or permanent impairments that become disabling. At the same time, we must avoid a false universalism with this claim, and understand that certain kinds of impairments result in more politically significant exclusion from participation in everyday life, in basic things such as employment, housing, or education.
To take inclusion seriously is to take the common good seriously, and to view the common good through the preferential option for the poor, that is, the marginalized. Removing the social and physical obstacles that turn impairments into disabilities makes a fuller participation in the body of Christ possible for all people. “Christ’s body,” writes Eiesland, “the church, is broken, marked by sin, divided by disputes, and exceptional in its exclusivity…Yet the church whose calling is to be a communion of struggle is made possible, though not made easy, by brokenness” (pp. 108-9). To bring about the “communion of struggle,” we must first come to terms with the practices in our own communities that continue to exclude people with disabilities. Take notice of our church spaces: are significant places like the ambo, the choir loft, the altar, or confessionals physically accessible for people with mobility impairments? Are ASL interpreters available for Masses? How does the congregation — or even, you, personally — react to “misbehavior” from a person with an intellectual disability during liturgy?
This first step, Eiesland warns, may reveal that the “church as a communion of struggle, like our bodies, is not always agreeably habitable” (p. 109). There will be challenge, and conflict — nonetheless, “this struggle for justice is part of the ordinary life of the church” (p. 111). We can no longer justify having excused ourselves from the table where justice for people with disabilities is being discussed. It is time to make sure all are included at our own.
Lorraine Cuddeback is a PhD candidate in moral theology at the University of Notre Dame. Her research is in social ethics, particularly disability and theology, Catholic social teaching, and feminist ethics. Her dissertation is about ethics, practices, and theologies of inclusion for people with intellectual and developmental disabilities.