Making Our Hearts Accessible, Too
[Note: This article originally appeared in Journal of Religion in Disability and Rehabilitation, 2, no. 3(1995): 1-11. It was the keynote address at the Open Congregation Forum for 1994.]
A few years ago a young woman named Lisa Carl, a wheelchair user with cerebral palsy, approached the ticket booth of her neighborhood movie theater and offered her dollar for admission. The owner refused to take it. He objected to her difficulties in speech and in mobility. He felt entitled to his rights: “I don’t want her in here and I don’t have to let her in,” he insisted. Later on, Ms. Carl expressed her pain to the United States Senate in her testimony supporting the Americans with Disabilities Act. (1)
The owner of the movie theater was not accustomed to accommodating people with disabilities in his place of business, so he felt he did not have to. The attitude of “We do not have any customers with disabilities, so why should we make any changes?” is common. But how can such businesses expect to have disabled customers when their attitudes as well as their architecture are so unwelcoming? It is precisely the absence of disabled patrons that indicates the need for a change.
Sadly, this attitude is also found in many houses of worship. Some congregations minimize the need for architectural accessibility, saying they have no disabled members. How could they have any, if prospective disabled members do not feel they are welcome or cannot even enter the building? Religious congregations need to take the lead in creating a welcoming place for people with disabilities, setting an example for society as a whole. Thankfully, many have done so. The Open Congregation has recognized many who have made outstanding efforts toward providing accessible houses of worship.
I would like to expand our usual notion of “accessibility.” A physically accessible building is important, indeed essential, but alone it is not enough. Without accessibility of the Spirit - a genuinely welcoming attitude and spirit of fellowship between people with and without disabilities - an accessible building is an empty shell.
Thus, in addition to physical barriers that discourage participation by people with disabilities, attitudinal barriers may confirm a lack of welcoming hearts. To overcome these barriers, it is first important to become aware of them. Extreme, rejecting attitudes toward people with disabilities still persist and can be as formidable as any architectural hurdle. One attitude that, surprisingly, can still be found in some communities today is the belief that people with disabilities are demon-possessed. Nancy Jennings, a co-moderator of Presbyterians for Disability Concerns and head of the Task Force for Caring and Inclusive Congregations for the New Mexico Conference of Churches, recalls some poignant personal experiences. When she was a child, people misunderstood her epileptic seizures and called them “flare-ups,” implying that they were intentional misbehavior. Her third-grade teacher, the daughter of a highly respected Methodist minister, slapped Nancy in the face when her first “flare-up” occurred. The teacher then placed her desk in a special position in front of the class. At any sign of odd behavior, the teacher would pull Nancy’s hair or yank her out of line. She denied Nancy permission to leave school early for doctor’s appointments.
Nancy’s father worked for the Santa Fe Railroad and was occasionally transferred to jobs in different communities. In one new community Nancy had a seizure during her second week at school. The school tried to expel her, informing her parents that she was mal ojo, “evil eye.” After her first seizure in church she was told she could never sing in the choir or be part of any major church activity since her seizures would “destroy” it. When the Sunday School superintendent tried to give her a job teaching preschoolers, people called for his resignation. When a new pastor arrived, Nancy became more hopeful. Since he himself had a visual disability, she expected him to be sympathetic. The first time Nancy had a seizure in church he stopped his sermon and asked that she be escorted out. He became very apprehensive about any further contact with her.
Experiences like these persisted into Nancy’s adulthood. When she was a member of a church in Albuquerque, the son of another member used to visit her son twice a week. All of a sudden, the visits stopped. Nancy called the boy’s mother to ask what had happened. The mother replied that her son could no longer visit because Nancy was “demon-possessed” and they “did not want that influence.”
Nancy’s experiences with the church were not exclusively negative. One church graciously accepted her and her family. Once at a youth event she had a seizure and, fearing rejection, she walked out. Later that day the pastor came to her home, assured her it was all right and said he wanted her to come back. He asked her to be more active in the church and the congregation warmly received her. This was not her only positive experience, and Nancy responded by dedicating herself to helping create a welcome place in the church for people with disabilities.
Besides the stigma of demon possession, another rejecting attitude that surprisingly still exists is the notion that if people with disabilities only had more faith, they would be healed. This attitude finds support in superficial interpretations of the healing stories in the Gospels. (Unfortunately, it is also encouraged by ideas from “New Age” medicine suggesting that the state of one’s health reflects the state of one’s mind.) Mary Jane Owen tells of having religious people say to her, “If you truly believe in the Lord, He could make you see before you get to the end of the block.” She describes a service in which the priest announced that only the devil prevents each and every one of us from having a perfect body. In the audience was a young child in a wheelchair who had a neuromuscular condition that made it impossible for her to hold up her head, thus distorting her posture. Her father almost shouted at her, “Come on, honey, you know you love Jesus. Just get up now. Come on, all you have to do is believe. Pray harder to the Lord to forgive you your evil ways.” He then called someone to help him pull his daughter out of her chair and onto her feet. (2) One can only imagine the pain and terror that girl must have felt.
Equating a lack of healing with a lack of faith can have subtle but very serious effects on the spiritual and emotional health of people with disabilities. It can lead to a sense of guilt, of falling short of God’s will, and of deserving God’s rejection. How ironic that in trying to bring people to a greater faith we sometimes alienate them from their true faith.
Many attitudinal barriers are far less obvious. These include condescension, pity, and even the experience of “feeling good” after having helped someone with a disability. If we are simply courteous to someone who needs a favor, as when we give directions, hold the door for someone whose hands are full, or remove a barrier from the person’s path, we do not necessarily feel as if we have saved the world. Why should it be any different if the person happens to have a disability? If after being asked we offer help, it is best given in the same spirit of courtesy we would extend to anyone. Sometimes even “good” feelings can mask a sense of superiority, a perception that the other is “different.” It is very often the case that those who appear to be kind and generous toward the disabled are unable to move beyond charity and acknowledge their equality in God’s eyes.
There is a subtle perception that often exists in the minds of people both with and without manifest disabilities, that we are somehow two separate entities, two different grades of humanity. This is perhaps the most formidable non-architectural barrier to the full participation of people with disabilities in religious communities or in the community at large. The title of the play Children of a Lesser God captures it in a phrase: we are two different levels of creation. An invisible line dividing us seems always to be present, creating awkwardness and self-consciousness, a sense of “us” and “them.”
Dr. William Blair, who is actively involved in disability issues and the church, speaks of the need for “awareness assessment.” He writes, with Dana Davidson Blair:
Christians who reflect on their own attitudes may come to the conclusion that they have done nothing to reject disabled people. But the church facilities that remain inaccessible, the visits that are never made, the invitations that are never extended, the friendship that is not shared, all these unresponsive gestures imply more clearly than any words the attitude of rejection. The physical barriers must be removed before someone like me can enter any church I choose. At the same time, there are those who build a ramp but will not ask me to contribute my education, experience, and talents. There are those who respond to me with sympathy and pity, and who refuse to look beyond my impaired body. An educated, respected man once told me, “You expect too much. You want people to change the world for you.” That is not what I want. It is, however, important to me that Christians approach me with the same attitude of acceptance, respect, and regard they give to others. (3)
Problematic attitudes toward people with disabilities exist not only in religious communities, but in most of society. Religious communities, however, have the power to move beyond reflecting general social attitudes, to set an example of inclusiveness and acceptance. To explore this possibility we must turn to its source. The basic text and source of inspiration and change for both Judaism and Christianity is the Bible. The Bible is a brutally honest book. It describes uncompromisingly both how things are and how things ought to be, and it is important to distinguish clearly between the two. This is particularly true in relation to disability. Let us first look at the Bible’s description of how things are.
In biblical times people with disabilities were very often seen as inferior, below the level of normal humanity. This attitude occasionally found its way into some popular proverbs: “The legs of a disabled person hang limp; so does a proverb in the mouth of a fool” (Proverbs 26:7).
Similarly, there was a proverb current at the time of King David that said, “The blind and the lame shall not come into the house” (2 Samuel 5:8). This proverb is mentioned in connection with David’s conquest of Jerusalem from the Jebusites. The latter bragged that even their blind and lame would turn David back from the city, to which David responded, “Whoever would strike down the Jebusites, let him get up the water shaft to attack the lame and the blind, those whom David hates.” Therefore it is said, “The blind and the lame shall not come into the house.”
In that context we read the story of a disabled person named Mephiboshet. His original name was Merib-baal (2 Chronicles 8:34), which means “Baal is my advocate,” or “hero of Baal.” Because the name Baal was associated with idol worship, his name was recorded as Mephiboshet, which literally means “mouth of shame.” There is a double meaning here: because of his disability Mephiboshet was looked upon as a shameful person.
Mephiboshet acquired his disability when at the age of five his nurse dropped him while fleeing from the Philistines. People called him “crippled in his feet” (2 Samuel 4:4), using his disability as often as his name to identify him. His father Jonathan died with King Saul in the Battle of Gilboa. Since David and Jonathan had been the closest of friends, David wished to show kindness to Jonathan’s son. He promised Mephiboshet a perpetual place at his table. Mephiboshet’s answer was striking: “What is your servant, that you should look upon a dead dog such as I?” (2 Samuel 9:8).
At that time, in that part of the world, dogs were frequently stray, wild scavengers, not the domesticated house pets with which we are familiar. A dead dog was a worthless, contemptible thing. Mephiboshet called himself this even though he was the son of a prince. David might well have considered him a threat - he was, after all, a surviving member of the house of Saul. Instead, David made a place for him in his own household. Mephiboshet’s disability not only made him seem of little worth to himself and others, it also made him innocuous.
This is the image of disability we sometimes find in the Bible. It is a historical description of traditional thought, of the ways in which people acted out of fear, superstition, and loyalty to traditions. These influences on human behavior do not always generate values based on the way things ought to be. But the Bible also represents those ideals God would have us follow.
The Bible constantly pushes human beings to transcend their limitations, to become better than they are. Chapter 19 of Leviticus sets forth a code of ethics designed to make the people a holy nation: “You shall be holy, for I the Lord your God am holy” (18:2). Further on we read, “You shall not revile the deaf or put a stumbling block before the blind; you shall fear your God: I am the Lord” (Leviticus 19:14). The implications of this verse are respect and courtesy extended to those with disabilities: one does not put a stumbling block before the blind nor curse the deaf; such individuals may be unaware of others’ behavior toward them (and this is why deafness is especially mentioned, even though the verse applies to any disability), but their image still must be respected, in both their own eyes and in the eyes of others as well.
The New Testament also makes an explicit statement about attitudes toward people with disabilities. One day Jesus and his disciples encountered a man blind from birth. Reflecting an attitude common in many religious communities even today, the disciples asked, “Rabbi, who sinned, this man or his parents, that he was born blind?” (John 9:2). Disability is once again seen as a sign of divine disfavor. Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him” (John 9:3).
The meaning of this incident is perhaps ambiguous. After all, Jesus did heal the blind man, and enabled him to see. This should not, however, be taken to imply that the man’s blindness was some moral or spiritual imperfection. Jesus used the miracle to call attention to the true meaning of “blindness” and “sight”: “I came into this world for judgment so that those who do not see may see, and those who do see may become blind” (John 9:39). He contrasted the man’s physical blindness with the far more intractable spiritual blindness of those people, rigid in their religion, who blamed the blind man for his condition, who said to him, “You were born entirely in sin” (John 9:34). Even though physically blind, he could see more than they. Thus, not only did Jesus defend the blind man’s spirituality, he challenged us to redefine our concept of disability.
Even though the Bible has been used to reject and exclude people with disabilities, a deeper understanding of the Bible, particularly the difference between its “is” and its “ought,” provides no support for such interpretations. Rather, it gives us a rationale - even an imperative - for welcoming people with disabilities as a previously fragmented part of our society.
In the Hebrew Bible the directive to respect the “stranger,” the one who is different from ourselves and with whom we do not naturally identify, is a constant refrain. We are specifically called upon to empathize with people who are different- “You shall not oppress a stranger; you know the heart of the stranger, for you were strangers in the land of Egypt” (Exodus 23:9). Empathy alone is not complete; it must become the basis of love: “You shall also love the stranger, for you were strangers in the land of Egypt” (Deuteronomy 10:19).
In the New Testament we find this idea expressed both in the Gospels and in the letters of Paul. Jesus expands on an ancient Hebrew tradition when he tells his followers to extend their hospitality and their love to those beyond the circle of family and friends: “For if you love those who love you, what reward do you have? Do not even the tax collectors do the same? And if you greet only your brothers and sisters, what more are you doing than others? Do not even the Gentiles do the same?” (Matthew 5:46-47). This kind of love is a challenge: it is much harder to love those with whom we do not identify.
Paul has his own beautiful statement of this idea in his first letter to the Corinthians. He aptly uses the image of the body to express the need to tolerate and even honor our differences:
Now there are varieties of gifts, but the same Spirit; and there are varieties of services, but the same Lord.... Indeed, the body does not consist of one member but of many. If the foot would say, “Because I am not a hand, I do not belong to the body,” that would not make it any less a part of the body. And if the ear would say, “Because I am not an eye, I do not belong to the body,” that would not make it any less a part of the body.... The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.” On the contrary, the members of the body that seem to be weaker are indispensable. (1 Corinthians 12:4-5, 14-16, 21-22)
There is, then, a clear theological basis for welcoming people with disabilities into the church or synagogue. How then do we put it into practice? In order for this theology to become real, both inner and outer work are necessary. We work inwardly by recognizing the attitudinal barriers we carry around inside ourselves. Through introspection we can become aware of the hidden fears and judgments that color our perception. Whether we have a disability or not, do we tend to see the world as composed of two groups, “us” and “them,” people with disabilities and people without? Do we tend to think of someone more as a disability than as a human being as complex as ourselves? Differences that are unfamiliar often make us awkward and self-conscious, but we can still remind ourselves that the surface difference is not all there is.
Perhaps our most common reason for rejecting someone with a disability is the hidden fear that, someday, what happened to that person will happen to us. People with disabilities comprise, after all, the only minority that anyone may join at a moment’s notice. It is also common to project onto another our own doubts about how we ourselves would cope if we had a similar disability. It is then easy to underestimate another person’s capacities, or to shower lavish praise for performing a task which, to the person who has learned to live with the disability, is routine. All these hidden blocks to a clear perception of another’s individuality can be recognized and worked through. The recognition of another’s individuality is, in fact, the most basic prerequisite for fellowship and love.
We can work on the outside by setting the example of a welcoming attitude. In this work the synagogue or church can take a leading role. Creating an architecturally accessible environment is only the beginning. The interests and talents of people with disabilities need to be consciously recognized and valued as a resource. Like anyone else, people with disabilities may be given responsibilities commensurate with their interests, skills, and competence. Their capacities need not be exaggerated, but they must not be forgo!tten. William and Dana Blair suggest that congregations sponsor disability awareness workshops, to educate members on disability issues.
Perhaps the most important thing we can do in this “outer” work is simply to practice seeing and treating others as individuals. In this regard we need to go beyond conventional advice - for example, that it is impolite to disregard a person with a disability, speaking instead to whoever accompanies him or her. Even in observing such courtesies we may still see ourselves as belonging to two separate classes of people. How then do we overcome our self-consciousness? It is not realistic to ignore the person’s disability: it is a part of his or her reality; but neither must we exaggerate its importance. What we do should depend upon many of the same rules of behavior we employ with anyone else: politeness, regard, respect, interest, pleasure at seeing someone we know, inquiries about health and family and sharing a pleasant conversation are not made impossible by the necessity of a wheelchair or a lack of vision.
Richard B. Steele is a minister who writes about his daughter Sarah’s unusual illness and disability. She suffers from a disease called fibrodysplasia ossificans progressiva, a condition in which normal muscle tissue is progressively replaced by bone. Early one January, one of Sarah’s doctors wrote her a note touching in its simplicity:
Dear Sarah,
I hope you had a good Christmas and Santa brought you some fun gifts. I received your beautiful pictures and they were some of the best gifts I got for Christmas. Pretty soon I will hang up the pictures on the wall in my new place so that I can see them all the time when I work, and think of my friend Sarah.
Love, Your Friend, Fred (4)
In this little note, the doctor speaks to his young friend, not to a patient or a disabled girl. Even though he is intimately involved in her care, he can put the medical issues aside and simply speak to her as a friend. Would that such simplicity characterized more of our relationships.
We have traveled a long way from the negative images of disability we first considered. We have come from seeing disability as a stereotype to seeing the person with a disability as an individual. As we have seen, the Bible also takes this journey. Both Jewish and Christian tradition inspire us to see not only disability, but all the surface issues that divide us, more humanely and more spiritually. They encourage us to cross these separating boundaries with respect for the individuality, divine image, that we find in the one who is different. Unfortunately these two religious traditions are still sometimes seen as opposed to each other, but when we view them together we can see that Judaism and Christianity both encourage the struggle toward the ideal of non-self-interested love that is based on the awareness and respect of the individuality of others. This is a great healing message for the world, especially in the present era of racial and ethnic strife.
Accessibility is not just a question of mortar and bricks, it is a matter of the heart. The religious traditions that challenge and inspire us to make our hearts more accessible are the greatest resource of congregations wishing to offer a spiritual home to people with disabilities. As congregations become more accessible, spiritually as well as physically, they contribute to healing the pain felt by the disabled community and of society as a whole.
Editor’s Note
Nancy Jennings passed away earlier this year, leaving behind many who feel her loss deeply. She was associate and friend to us and irreplaceable as both. The emotional pain she endured because of her disability did not extinguish a great spirit or an unwavering sense of life’s joy. Unique, courageous, and remarkable, Nancy will be remembered with admiration and love.
Notes
1. Shapiro, Joseph P. No Pity. New York: Random House, 1993, p. 105.
2. Owen, Mary Jane. “What’s So Important About the Wrapping Paper on Our Souls?” Rehabilitation Gazette 27, No. 2 (1986): 10-11.
3. Blair, William and Dana (Davidson). “To the Glory of God: Hesed, Hospitality, and Disabilities,” in And Show Steadfast Love: A Theological Look at Grace, Hospitality, Disabilities and the Church, ed. Lewis H. Merrick; Louisville, KY: Presbyterian Publishing House, 1993, p. 20.
4. Richard B. Steele. “Accessibility or Hospitality? Reflections and Experiences of a Father and Theologian.” Journal of Religion in Disability & Rehabilitation 1(1):23, 1994.