BEYOND ACCESSIBILITY
Toward Full Inclusion of People with Disabilities in Faith CommunitiesBy Brett Webb-MitchellChurch Publishing
Copyright © 2010 Brett Webb-Mitchell
All right reserved.ISBN: 978-0-89869-641-7Contents
Acknowledgments................................................................ixPART ONE Images for an Inclusiveness Community................................1Chapter One • Introduction: Beyond Accessibility..........................5Chapter Two • The Church: The Body of Christ..............................27Chapter Three • Gifts, Talents, and Services..............................43Chapter Four • Moving toward Community....................................57PART TWO From Acceptance to Full Inclusion: The Practices.....................69Chapter Five • Hospitality and the Stranger...............................75Chapter Six • Accessibility and Acceptance................................93Chapter Seven • Inclusion and Gestures....................................113Chapter Eight • Practicing Love...........................................133
Chapter One
Introduction: Beyond Accessibility
"People react weird to people with disabilities like me," said Rich, sitting comfortably in his modern electric wheelchair. "They act like a disability is something they can catch, like it is infectious. At church, most people are unable to get past my disability. They stare not at me but at my disability." I sit in the taupe Lazy Boy recliner directly across from him. While I am not sure if I can separate a disability from someone's personhood—anymore than I can separate gender, race, or sexual orientation from someone's personhood—I think I get the point: people look at his wheelchair and his body sitting in the chair—with a brace supporting his head, and the limp position of his left arm, hand, and legs—rather than at him. From time to time during our conversation he casually moves one of his two fingers on his right hand onto the space-age control pad situated on the right armrest to adjust and readjust the wheelchair to a height and reclined position that is comfortable for him.
From where I sit in his family's large, austere living room, furniture pushed aside to make it easier for Rich to move around in his wheelchair, I silently admire his chair and the technology behind and in it. His chair is incredibly sophisticated in all its electronic marvels; even the ergonomics are intriguing to my naïve eyes. While I study and admire the chair in the comforts of his living room, I quickly remember a time in my life when wheelchairs were not so sophisticated.
At the time, I was working in my first position as a music therapist at a state hospital for children and adults with multiple physical, emotional, and developmental disabilities. I would push children in larger-than-life metal wheelchairs, that were universal in size and not made to fit any human body per se, through cheerless, cluttered hallways of a state institution—called a hospital back then—for people with developmental disabilities or, as it was called then, "the mentally retarded." Not surprisingly, the generic wheelchairs often did not accommodate the small bodies of the children. In response, carpenters on the grounds made some rather crude physical adaptations to the basic wheelchairs without changing the chairs themselves. The challenge for the carpenters was to craft chairs for children of all shapes, sizes, and disabilities. For example, carpenters added a fascinating array of cushions and pads to fit the shape and requirements of children with microcephalis (unusually small head and underdeveloped brain), hydrocephalis (unusually large heads because of the build up of fluid inside the skull, leading to brain swelling), and sometimes for young people with almost paralyzing cerebral palsy, seizure disorders, or other physical disabilities. The strategy for building a customized wheel chair usually involved taking a basic wheelchair—it seemed that all that was available in those days were big, medium, and small sizes—adding a pad to separate the legs so that they wouldn't rub together, and then attaching a large "S" shaped pad in the back to protect the patient from further scoliosis or curvature of the spine. At the top of the chair the carpenters usually affixed two large padded mounds that looked like lollipops on a stick, making it possible for a person to be angled in such a way that their head would fall backwards onto the blue plastic-covered cushion rather than falling forward. Automobile seat belts were attached to the metal frame to keep the child in the chair. There were no electric chairs at the institution. An electric wheelchair like the one Rich sits in today was, at that time, a dream for the future, a la "Star Trek."
The future is today.
I've been to Rich's Dutch Colonial style house several times over the year because he is a member of the church where I am interim pastor. He is also one of the "shut ins," a category given to those people who are not able to leave their homes easily. Usually this category means those who are elderly and infirm. In this case, Rich is not elderly (he is my age, after all, and I'm not elderly), but he is infirm. Rich has made it to worship only once in the last year since I've been interim pastor—Christmas Eve to be exact—so, along with another Elder of the church, I bring Holy Communion to his home from time to time. My bringing him the elements of Holy Communion at home is easier for him and his family. Since Rich has become more limited in the use of his limbs because of his multiple sclerosis (MS), it often takes a great deal of effort to get Rich out of the house and into the church. Such an adventure—even though the church building is only a few blocks or roughly a half-mile from the home—takes Rich and his family some time to get him dressed, get him into the van, get him out of the van, get him into the church, and get him down the aisle to the place where there is a half-pew space for wheelchairs.
So I bring Communion to Rich, and in our time together I realize the truth behind Jesus' promise: wherever two or three are gathered in my name, I am there (Matthew 18:20). The Spirit of Christ is in our discussions about life, God, and the Church, and in sharing Holy Communion with one another.
Our discussions of topics related to the Church in particular, and Christian life in general, are not a stretch for Rich. Rich is a "P.K.," an abbreviation for what we in the church business translate as a "Preacher's Kid." Rich grew up in New Jersey, raised in a home where his dad was a minister in the Reformed Church of America and his mom was the minister's wife and a nurse. His mom, now deceased, was initially annoyed that Rich hadn't asked Jesus to heal him. Rich tells me that he did ask to be healed but, well, sometimes for no rhyme or reason these things just happen in life.
Today, Rich is married and is a proud father of three strong-willed, creative children, and grandfather of three. Rich had a successful career as a hospital administrator for most of his life, having worked at the nearby community hospital before multiple sclerosis progressed to such a point that it now controls most of his body.
Rich's perspective on living with a disability is not sugarcoated or draped in a romantic, faithful banter that minimizes the pain of living with a chronic disease and physical disability. The challenge may be compounded by living in a small Southern hamlet, in which people with certain disabilities, especially those in motorized wheelchairs, are still a rare sight, unlike larger cities, where people in motorized wheelchairs blend into the fabric of the urban environment. Multiple sclerosis is no joy ride. "Shit happens," he has said more than once. In less than twenty years he has gone from being a healthy young man to being almost bedridden, save for the hours he spends in his wheelchair, with the only voluntary movements left in his body being in his right arm and two fingers, along with his ability to talk. He has a lively imagination and is incredibly smart. When I ask him what it is like to live with multiple sclerosis, he takes a deep breath, waits a beat, and tells me, "Eighteen years ago or so I was chatting with a small group of people about how I was doing living with MS and I related that I had some foot drop, fatigue, and had to stay out of the sun or symptoms exacerbated but otherwise not too bad. An older man in the group who had mild MS but both his wife and daughter had more severe MS said to me, `It's going to be a tough life,' and he was right." The upside of living with multiple sclerosis, if there is one? "Learning patience."
Rich is a man of faith. And that faith is genuine and sincere. I sensed that from our conversation in his home when we first met a few months ago. He is somewhat angry at God for allowing multiple sclerosis to come into his life, but he is also thankful for the good support of his family, including brothers, sisters, parents, kids, wife, and others. Although he came to church twice a month when he was able to get around on his scooter, his time of going to church has been limited by the progressive nature of his degenerating neurological condition. He can do less and less by himself, and more and more of his everyday life requirements are placed on the other members of his family. Because it is now physically daunting to get into the sanctuary, even though there is an elevator and the church's front pews have been cut to make it possible for him to "blend" into the congregation—though his big black chair sticks out amid the white pews with red cushions-he has stopped coming to worship because it is too much of a physical challenge to simply get there. He keeps up with church activities through paper newsletters, computerized messages, and visits from the pastor. In addition, he deepens his theological interests by reading books with a spiritual message.
Before I left his house one day, I asked Rich when he met God at the proverbial Pearly Gates, would he be in a wheelchair or walking. "Walking," he said without missing a beat. "When I dream at night I am walking. I am never in a wheelchair in my dreams. I won't be in a wheelchair when I meet God either."
Crossroad: Between the Past and the Future
I begin this book with Rich's story because he embodies the latest crossroad we find ourselves at in this journey of faith communities and the "community" of people with disabilities. The path we choose at this juncture will determine and shape how people with disabilities will discover their place, role, and function—or in theological language their gifts, talents, and services—toward the greater good of all of us who are members of the Church, the body of Christ.
The Church must choose either to go forward in faith, stay right where it is, or—worse yet—go back to where it once was. In the past we, the Church of people who are burdened with hidden disabilities or non-disabled, have been in relationship with or treated people with visible disabilities largely as objects of charity. As objects of charity, the view is often taken that an impairment has been foisted upon a person from birth because of a birth "defect" such as Down syndrome, or due to one's age like Parkinson's disease that usually strikes people over the age of 40, or are victims of their own disability-marred future, like someone who contracts cancer from smoking or is HIV positive. There are still people in this world who believe a child's disability is somehow or the other related to the sin of a parent or forbear.
Now, with large brush strokes and broad generalizations, here is the ongoing dilemma: regardless of how one contracted the disability, condition, or limitation, the Church views and hears that person as "handicapped" and as someone to be pitied, rather than as a human being who lives with a limitation or disability. Charity is foisted upon the individual, whether the individual has asked for it or not. Or, alternatively, the person with a disability becomes merely a teaching tool for pastoral care types who want to help the rest of us who are non-disabled to discover our mortal limitations or the vacuous nature of our rat-race lives.
Sadly, many people with disabilities did and do not know that there was an option, a choice, for doing or being something different than simply being a case study or object of charity. While those with physical or sensory disabilities—being blind or deaf for example, or those who live with allergic reactions to certain perfumes, scents, gluten, or peanuts—knew and know that they have a choice or option for how they will be perceived in the world, many people with intellectual or social disabilities were not always aware or know they have an option of how they wanted to be known and related to by others. The lack of role models who did not "fit" society's image of being "disabled," the failure to be with others with intellectual or social disabilities in learning how to reshape the public's viewpoint or perspective, left many to be shaped by the un-informed public. People with intellectual or social disabilities were and are often simply disempowered or disenfranchised by the majority of people who are non-disabled.
More recently, out of a mixture of guilt and the "Golden Rule," otherwise known in Church circles as Jesus' command for us to "do unto others what we would want them to do to us" (Luke 6:31), some people who are non-disabled in congregations and parishes have "made it possible" for or "allowed" more people with disabilities to be part of a church by making a limited number of physical and programmatic accommodations. For example, consider Sunday school programs just for people with certain intellectual disabilities, and perhaps a special worship opportunity outside the normal worship service on Sunday morning for the same people. The words in quotation marks above dramatize the inequality of power, within which people who are non-disabled have the sole power to determine how a church structure or program will be made accessible for people with disabilities. For example, Rich openly acknowledges that the Church building is physically or architecturally accessible to a person with physical disabilities, though he is reluctant to say how accessible it might be to someone with a different kind of disability, like an intellectual disability.
Though this will be discussed later in this Introduction, the reason that many of our church structures built prior to the 1960s were not accommodating to people with disabilities is because the majority of people with disabilities were simply not present. People with disabilities were not living by themselves in houses or apartments, in group homes (there were none to speak of), or with their families, and thus were not in our communities or neighborhoods. Many people with disabilities were living in institutions for people with disabilities, with one of the oldest institutions reaching back to the sixteenth century, with the creation of "St. Mary of Bethlehem Hospital for the Insane" in London, England. And before that, many people with disabilities of all kinds were left to fend for themselves in the alley ways, by ways, and sitting by the city gates or pools of healing, much of which reaches back to biblical times, as recounted in various Gospel stories (Luke 14:15–24, John 5:1–15). In response to this lack of entry into the hearts, minds, and houses of worship, there was a grassroots movement in the 1960s to form intentional communities of people who are able-bodied and disabled. The goal of these faith communities like L'Arche Lambeth was the full inclusion of people with disabilities in every aspect of the life of the community; indeed, the presence of people with disabilities was the raison d'être for the community itself. The problem for many intentional faith communities that include people with disabilities is that often the people with disabilities did and do not have a choice as to whether they want to be part of these communities. This infuriates many people with disabilities who, in more recent days, are part of a self-advocacy or self-determining movement, whose goal is to assure that everyone with a disability exercises their right to choose where they live, work, worship, play, vote, and learn. Many people in the self-advocacy movement believe that, without this choice, those living with disabilities in such intentional communities are kept more or less dis-abled—literally not able to speak or communicate for themselves—and thus disenfranchised.
So this thumbnail sketch shows us where we are at this juncture of the road, with a decision to be made as we both, the Church and people with disabilities alike, try to figure out which path we are going down from here. Do we maintain the status quo by offering limited physical and programmatic accessibility for the few who can be assisted by family advocates and friends? Or do we, the Church, follow the lead of the majority of people with disabilities—and their family and friends—who rightfully and faithfully want us all to move forward. Do we need to treat people with disabilities not as charity cases or as second class citizens (and this is being polite) but as full citizens within the body of Christ that is the Church. Do we, the Church, engage and work with people with disabilities in making sure that everyone is provided opportunities to discover and use their God-given gifts, services, and talents through full participation and leadership in the body of Christ? And furthermore, do we, the Church, move forward by working with people with disabilities toward the full recognition that we are all created in the image of God and are members of Christ's body, even moving beyond modern society's perception that divides the world into a duality of the "disabled" and "able-bodied"?
(Continues...)
Excerpted from BEYOND ACCESSIBILITYby Brett Webb-Mitchell Copyright © 2010 by Brett Webb-Mitchell. Excerpted by permission of Church Publishing. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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