Finding a Place at Jesus’ Redemptive Table
On a Thursday afternoon in the first week of March 2020 my oldest daughter Natalia, who has Down syndrome and autism, came home from school happy as usual. By dinnertime, we noticed she had a weird dry cough that made her lungs rattle in a way I never heard before. By bedtime she had a fever of 102 that burned for the next nine days. At that moment in the pandemic, scheduling a Covid test was nothing short of a miracle. My wife and I frantically called every medical facility in the area. We got caught in an endless loop of exchanges with doctors, pediatric nurses, and the Department of Public Health, with no luck.
My wife and I were no strangers to disability advocacy for our daughter. But there’s nothing like a global pandemic to expose the precarious status of individuals like Natalia in our society.
We were no strangers to disability advocacy. My wife and I fought many inclusion battles at the local and federal levels, including those we waged with New Haven Public Schools while studying at Yale Divinity. But this time was different! Nothing like a global pandemic to expose the precarious status of individuals like Natalia in our society.
Around the time the first Covid cases began to appear in the US, states started releasing Crisis Standards of Care guidelines (CSC) to address the expected burden of the Covid pandemic on our nation’s healthcare system. CSCs are state-sponsored recommendations issued when circumstances make it necessary to “adjust” the delivery of healthcare resources. That is a polite way of saying, “healthcare rationing.” To my dismay, many of these guidelines established that individuals like my daughter―that is, people with cognitive and intellectual impairments―would be at the end of the line if medical personnel and equipment such as ventilators were scarce.
As a parent of children with congenital issues, I am well aware of the biases and exclusionary practices in all major institutions in our society, including our healthcare system. However, the blunt way that CSCs from many states diminished people like my daughter was perplexing.
A Blessing to Our Family
These guidelines disregarded the fact that Natalia is the healthiest member of our household. She is the one with the happiest disposition to tackle life’s challenges. These policy recommendations ignored that Natalia’s life is one worth living and that she has been nothing but a blessing to her family and those who come in contact with her.
In those nine scary days where my daughter struggled with what we suspect was Covid, my wife and I were able to take care of her at home. However, knowing that hospitals across this nation were being advised to neglect the needs of people with similar medical profiles was heartbreaking.
Impairment vs. Disability
How can churches play a role in the lives of millions of individuals like Natalia? How can educators, theologians, and faith leaders seeking to heal the gap between the church and the world join forces with us―advocates seeking justice and dignity for loved ones deemed dispensable? First, it would be helpful to understand the subtle distinction between an impairment and a disability.
A human impairment refers to a decline in a person’s body structure or function or mental functioning. Biblical narratives, for example, are full of characters with impairments. Scientific advances continue to expose our inherent susceptibility to impairments throughout our lifetimes all of us are subject at some point to physical or cognitive impairment, We have been forced to learn through this pandemic that to be human is to be vulnerable and fragile. People with evident physiological challenges are worthy representatives of our humanness, not the absence of it.
By contrast, the concept of disability represents a modern social construct that encompasses not just the medical but also the social aspects affecting or constraining the individual. The World Health Organization defines disability as a three-dimensional concept that includes a person’s physiological challenges, the limitations in the activities these individuals undertake, and the restrictions to participation that institutions may impose upon them.
Our attitude toward disability reflects the collective image of what we value as a society. The church has the power to shape these attitudes―the church can help “enable” or “disable” individuals with impairments. How then do we implement an inclusive vision of society that reflects the values and the ethos of the ministry of Jesus?
Four Congregational Models
Special education scholar Erik W. Carter once shared with me a typology of inclusion for places of worship. His typology is based on four prepositions: “apart,” “for,” “with,” and “by.” Here I share my understanding of each stage involved in this practical tool.
At the most basic level, a congregation that pursues ministry apart from people experiencing disability is acting as if individuals with impairments are not to be recognized by their communities. The congregational agendas guiding such actions end up perpetuating restrictions to participation already found in many secular institutions. At the next level, communities of faith can do ministry for people experiencing disability. Congregations at this phase recognize the existence of those with physiological challenges, yet such individuals are perceived as tasks or assignments to undertake. Compare this with the vision of inclusion that regards people facing physical or intellectual challenges not as recipients of charity but as the people occupying the prominent places at Jesus’ redemptive table.
At the third level, congregations can do ministry with individuals experiencing disability. These organizations have embraced the Apostle Paul’s vision of the church where “those members of the body which seem to be weaker are indispensable” (I Corinthians 12). At this level, people with physical or cognitive impairments are not a burden but fellow contributors to the wellbeing and stability of our communion as people of faith. When the church treats people with impairments as co-participants, it embraces its divine identity as the bearer of good news to those deemed dispensable.
The final phase in this typology establishes that congregations and society both are better off when we are ministered by people experiencing disability. This vision of inclusion transcends religious boundaries and reaches the public square. Like a shining beacon in a stormy night, the church honors the healing contributions of people with disabilities, and works to transform the behaviors, the policies, and the institutions that denigrate those whom Jesus has called to his redemptive table.
Through congregational examples of inclusion, we can begin to subvert ideologies that judge the value of our lives based on our independence, productivity, or functionality. It is instead through our weakness that the power of God is perfected in our lives. Let us remember that those members of the body who seem to be weaker are indispensable in the society that we aspire to build.
Samuel L. Caraballo ’13 M.Div. teaches biology and physics in the Boston public school system. He is a graduate of UMass-Boston and the Boston University School of Public Health and focused his study at YDS at the intersection of science, theology, and disability. He has served as a ministry fellow at the Forum for Theological Exploration, which is devoted to inspiring young people to discern a Christian calling and make a difference in the world.
 Carter, who teaches at Vanderbilt University, is the author of Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families, and Congregations (Brookes, 2007) and other books.