A Conversation with Author Stephanie Hubach – First published in byFaith Magazine April/May 2007.
In 2005 Stephanie Hubach, Chairperson of the Special Needs Committee of Reformed Presbyterian Church (PCA) in Ephrata, Pa., wrote an article for ByFaith titled, “Those With Disabilities Help to Make Us Whole.” The response was both surprising and encouraging. Dozens of church leaders and PCA church members called and wrote, hoping to learn more about ministry to and alongside of individuals and families affected by disability.
Last year P&R Publishing released Hubach’s book: Same Lake, Different Boat: Coming Alongside People Touched by Disability (P&R Publishing, 2006). ByFaith recently spoke with Hubach about her book which is “designed to renew our minds to think biblically about disability in order that our lives, our relationships, and our congregations might wholly reflect Christ.”
The title Same Lake, Different Boat is an unusual title. Tell us about why you chose that.
When we approach someone who is dealing with circumstances different than our own—for example, a disability—I think we have a tendency to head toward one of two extremes. On the one hand, we may adhere to the American melting pot idea—that “we’re all in the same boat”—and by focusing exclusively on what we have in common, we fail to acknowledge the genuine differences between our life experiences. Or, we may follow the postmodern concept that real understanding of others is not truly possible, and we exaggerate the differences as if “we’re in different lakes entirely.” But as Christians, we need to practice identification that is like God’s example to us: one that’s not based solely on what we have in common, or exclusively on how we’re different, but identification that’s intentional. That’s the idea behind Same Lake, Different Boat. This approach recognizes that as human beings, we’re essentially the same but experientially different. So identifying with each other is a choice—a choice that can have tremendous blessings.
So, identification with others is a choice. Did you write the book to encourage Christians to make the choice to enter into the lives of individuals and families touched by disability?
Yes. In 1992, our youngest son, Timmy, was born with Down syndrome. Prior to that, my husband Fred and I had been closely involved with friends who had not just one but two sons born with disabling conditions. But, our eyes were opened to a whole new dimension of life when our own son was born with a disability. Suddenly, we were personally immersed in “disability world”—including all of the caseworkers, specialists, therapists, and hospitalizations that go along with that. As I became increasingly involved in various parent groups and disability advocacy organizations, I saw firsthand the depth and breadth of the challenges facing families affected by disability: spiritually, emotionally, physically, relationally, psychologically and financially. In amazement, I realized that a significant number of them were “going it alone”—in many cases unsupported by family or friends, and the vast majority were un-churched.
I began to ask myself, “Where in the world is the Church?” Having experienced firsthand the blessings of a supportive church when Timmy was born, I knew that the Church has just what families touched by disability need—the restorative power of the gospel for their lives in word and deed. As we grew in wonder of and appreciation for Timmy as a person, I also realized that families with a disabled family member have just what the Church needs—the precious image of God packaged in incredibly diverse ways that can benefit the entire body of Christ. But in order to experience this blessing, the Church has to choose to enter into the lives of individuals and families touched by disability with intentionality.
What do you think inhibits the Church from this intentional identification?
First of all, identification starts by simply acknowledging the reality of disability in our world. In western culture, we’ve been pretty effective at attempting to sanitize our lives of any association with difficulty or discomfort. If we’re honest, we don’t like to deal with people who have disabilities because it reminds us of our own vulnerabilities. Second, we need to learn to see disability through a biblical lens rather than the ways that we typically tend to view it—which is either through a historical grid or from a newer, postmodern vantage point. Once we have a biblical perspective of disability, we will not only tend to treat people with disabilities more appropriately, but we will also view ourselves more accurately. Third, we need to enter into people’s lives—with or without a disability—from a posture of respect. Even as Christians, we often operate more from positions of power and control than we’re willing to admit. We like to see ourselves as the strong ones who minister to others in their weaknesses. But Christ-like, respectful relationships are built on two pillars: grace and the image of God. Grace levels the playing field. In grace, we identify with the shared difficulty and brokenness in each other’s lives—regardless of how that manifests itself. On the basis of the image of God, we identify with the shared value of every life as a life worthy of celebration—regardless of how that life is “packaged.”
Can you explain the different perspectives of disability you mentioned?
Sure. Throughout the course of history, I think society has looked at people with disabilities as an abnormal part of life in an otherwise normal world. This has had tragic results—including countless abuses against people with disabilities over the centuries. Unfortunately, this view has also often prevailed in the Church—unchallenged by what the Bible really says about disability. It doesn’t take much imagination to understand why people with disabilities resent being seen this way. Would you or I want to be viewed by others as an aberration?
In reaction to that, many postmodern disability activists have responded by essentially saying, “No, disability is a normal part of life in a normal world.” They are trying to improve the lives of people with disabilities by changing the language that surrounds disability. So, they advocate that disability itself is something “celebratory,” and that disability is simply “a difference”—a difference no different than hair color. Yet, this approach fails us too because it is essentially dishonest. It dismisses the difficult realities and some of the grief that accompanies disability in the life of a family. Instead of celebrating the person with the disability, the postmodern view has made the error of celebrating the disability itself.
Only the biblical perspective of disability captures both realities. It teaches us that disability is a normal part of life in an abnormal world. In other words: yes, disability is to be expected. It occurs around the globe and spans the generations of human existence. But, the Scriptures also teach us that—because of the Fall of humanity—we all live in an abnormal world. And as a result, every one of us experiences some degree of difficulty and brokenness in every area of our lives. And, at the same time—because we are created in the image of God—every one of us possesses a life worthy of celebration: a life that reflects the goodness, truth and beauty of God himself.
Give us a picture of what a congregation with a Christian perspective of disability looks like as it relates to people touched by disability.
A congregation that engages people with disabilities from a biblical vantage point will, as I mentioned earlier, have a respect-based relational approach to people—all people. Recognizing every person’s innate value, they will gladly find ways to make welcoming and belonging a reality for everyone in the body of Christ. In grace, that congregation will gladly make the necessary, sometimes sacrificial, accommodations to include individuals with disabling conditions. As our pastor Tom Nicholas says, “Disability ministry is not a nice thing we do. It is the gospel in action.”
These churches will also understand that disability affects not only the person who has the special need, but also the entire nuclear family unit and the covenant community in the local congregation. All will need to enter into the challenges. All will benefit from the blessings. Disability is not an exclusively negative experience. Life isn’t just about difficulty and neither is life with a disability. Disability is just like the rest of the “stuff” of life—it reminds me of our wedding vows: “joy and sorrow, plenty and want, sickness and health.” Let me just mention here that I tried to write the book in a way that mirrors life this way. So, in addition to sound theology, and thought-provoking challenges, I wove humorous illustrations about my sons Freddy and Timmy into many chapters to make it enjoyable to read too—not just weighty.
What blessings do people with disabilities bring to their covenant communities?
The blessings are as diverse as the people themselves. The problem is that we often tend to view people with disabilities exclusively through the lens of their disability or their limitations, and yet, this is only one aspect of who they are as a complete person. All people with disabilities have abilities too. And all Christians, including Christians with disabilities, have spiritual gifts “given for the common good (I Corinthians 12:7).” This may sound simplistic and obvious, but sadly, we tend to miss this, in part because we wrongly focus on the disability, and in part because we fail to realize that sometimes the packaging of the giftedness is simply different. We tend to either miss it, or worse—dismiss it—particularly for people with intellectual disabilities. Those with intellectual disabilities have much to teach us about faith, but usually we are not even listening. In a similar way, people with sensory disabilities or physical disabilities are sometimes overlooked for church leadership positions that they are qualified for—just because they use a wheelchair or an assistive device.
You refer to this type of mistreatment as a justice issue in your book. Could you explain that further?
We know that justice matters to God. The subject comes up more than 200 times in Scripture. Justice is the appropriate use of power to do what is morally right and fair. We read in Leviticus 19:15, “Do not pervert justice; do not show partiality to the poor or favoritism to the great but judge your neighbor fairly.” In this passage the “poor” include the disadvantaged in society. And the “great” are those with economic or social advantage. It’s important for us to note that Scripture doesn’t promote compensation of the “poor” at the expense of the “great.” It calls for the restoration of a level playing field. The goal isn’t to show partiality to anyone, but fairness to all.
What’s the Church’s role in leveling the playing field?
When addressing disability in the Church, the goal is not to convey that people with special needs are somehow God’s special people—those who are due extraordinary rights and privileges. It is to restore fair and respectful treatment of every person as a unique individual created in the image of God, including people with disabilities.
And when we fail to do this…?
The antithesis of justice is oppression. It’s a harsh word for most of us, and when we hear it, we probably think of what I call “active oppression”—the intentional holding down of another through the use of power in a way that’s immoral and inequitable. But oppression can be passive as well. It involves the holding down of another through what is not done, and it’s generally a matter of neglect, which stems from ignorance or indifference. Passive oppression is more typical of what occurs in churches. For example, when a church building has half-a-dozen steps to its front door and no alternative handicap-accessible entrance, it is literally holding down anyone who might desire to worship there but needs a ramp to enter. If a Sunday school program fails to address the Christian education needs of a child with Down syndrome, and just looks the other way, it is holding back both that child and his parents from full participation in the life of the church. When adults with appropriate spiritual gifts are never even considered a position of church leadership because they’re affected by disability, they’re being held down by their congregation.
And of these two – ignorance and indifference – indifference is the knottier problem?
Ignorance often results in a failure to provide for basic needs because we just don’t know the problem exists, or we don’t understand how to address a specific challenge. But yes, indifference is more complex. It’s a matter of the heart. It could be characterized as, “We know there’s a problem, but we really don’t care enough to act.”
What difficulties arise when congregations choose to be inclusive in their practices?
In Paul’s discussion on the body of Christ in I Corinthians 12: 25, he talks about showing “equal concern for each other.” When we do that, everyone has to adapt—both those with and without diagnosable disabilities. The family of a child with developmental disabilities ought not to enter the local church with a demanding and inflexible attitude, nor should the existing congregation be unwilling to make any adaptations. Our selfish natures resist making accommodations for each other, but that is what is always required of us when we love as Jesus loves. “Win-win” congregational inclusion can be created in many and varied ways when we are simply committed to finding ways to show equal concern for each other. Sometimes, this means evaluating whether certain aspects of our congregational life are really biblical or simply part of our “church culture.” Must there be complete silence during a sermon? Do you have to sing perfectly to be in the choir? Do you have to be articulate to give a personal testimony? Working through questions like these can be a painful, but healthy, evaluation process for a congregation.
Sometimes, showing equal concern for each other means rolling up our sleeves and learning how to care for a child with autism, or spina bifida, or cerebral palsy so that their parents can enjoy an uninterrupted worship experience. Sometimes adapting means that we all learn to accept “distractions” in the Sunday morning service so that a person with developmental disabilities can do what all of us were created to do: to worship God in spirit and in truth. St. Gregory of Nyssa once said that “mercy is a voluntary sorrow which enjoins itself to the suffering of another.” When we enter into the challenges of another, whether they are disability-related challenges or not, it will always cost us something. But for it to be genuine mercy, we must willingly, actively enter into their struggle in an intentional, personal way. This is the essence of the humble, righteous, sacrificial life of love that Jesus calls us to in the Sermon on the Mount.
What is your vision for the church with regard to people with disabilities?
My vision is that we would see the body of Christ made whole through the inclusion of all its members. The Church as it operates today is disabled. It is attempting to function without all of its intended parts. It’s important to note here that I don’t approach special needs ministry as a “disability rights movement.” Instead, I see it as a “benefit all of the body of Christ movement.” When the Church operates as it was intended to, life improves for all of us.
In order for this to be accomplished it means two things: First, going out to where people with disabilities are, since a disproportionate number of people with disabilities and their families are un-churched. As the parable of the banquet in the gospel of Luke says, we need to go out and “bring them in.” Second, for those who are already part of the covenant community in name, but not in practice, we need to make the church a hospitable place where genuine welcoming and belonging actually takes place. Many Christians with disabilities live on the fringes of congregation life, if they are able to attend church at all.
In addition, I hope the Church will capture the urgency of its mission to people with disabilities (and their families) as a Sanctity of Human Life issue. The Church has, in recent history, equated being pro-life with being anti-abortion. But it is so much more than that. It is being “for” the life of my neighbor. The lives of people with disabilities are already becoming increasingly at risk in our culture because of the devaluation of humanity coupled with our collective unwillingness to sacrifice for others. If the Church does not “get it” soon with regard to the enormity of this problem, it will be too late. If Christians are unwilling to enter into the challenges of people touched by disability when the going is relatively easy, we are fooling ourselves if we think we will step up to the plate when the going is tough.
Last question: How do you think Same Lake, Different Boat can be used by churches to make that vision a reality?
My prayer is that Same Lake, Different Boat will be used by the Holy Spirit to raise awareness, educate congregations, promote discussion, and—most of all—soften hearts. Whether the book functions as a resource for individual Teaching Elders, Ruling Elders, and Deacons—or whether small groups or women’s ministry groups in the congregation use it as a discussion tool to challenge themselves in the area of practical Christian living—it’s time for the Church to live out “Christianity with its sleeves rolled up,” as our PCA friend Joni Eareckson Tada says. No matter what the immediate needs are in any congregation, the book is designed with three sections that can be used “stand-alone” or as an integrated whole. Whether they need to better understand about the biblical foundations of disability ministry, the issues facing the families they hope to serve, or how to facilitate inclusion that’s overdue in their church—I think they’ll find sound theology, real life examples and practical applications in every chapter.
Stephanie O. Hubach (MATS, Covenant Theological Seminary) is research fellow in disability ministries at Covenant Theological Seminary and visiting instructor in the seminary’s educational ministries program. Previously she served as the director of MNA Special Needs Ministries (now Engaging Disability With The Gospel). She is the author of Same Lake, Different Boat: Coming Alongside People Touched by Disability, Revised and Updated (P&R Publishers, 2020). To learn more about Steph or access additional resources, visit her website.
© 2007 Stephanie O. Hubach. All rights reserved.