Accessibitity or Hospitality

Reflections and Experiences of a Father and Theologian

No one who suffers from a physical disability or is close to someone who does can fail to rejoice at the earnest and widespread efforts now being made to improve the "accessibility" of public facilities and services; that is, to remove or alter whatever impedes or prevents their use by people whose senses and/or limbs do not function "normally." Still, the primary objective of this essay is to deny the adequacy of the concept of accessibility in helping us think about and respond to the special needs of disabled persons. But, as the father of such a person, at the outset I wish to register my deepest gratitude to those who have advocated, legislated, and now bear the costs and inconveniences of making ours a more barrier-free society. I deem their work absolutely necessary, though ultimately insufficient, in establishing a hospitable environment for the physically challenged.

I have a secondary objective as well, namely to introduce readers to the rare and baffling musculoskeletal disease with which my seven-year-old daughter Sarah is afflicted: Fibrodysplasia Ossificans Progressiva (FOP). This disorder is worth knowing about since it may hold the key to the mysterious processes of normal skeletal formation and bone development. It must be noted that (in describing this disease) I am but a layman, though by parental necessity an informed and interested one. My profession is that of a theologian, and as such my discussion of FOP will illustrate what I take to be problematic about the fashionable concept of accessibility.

I shall begin by citing two ancient texts to provide an image of the devastating affects of FOP. Then I will offer an overview of the clinical features of this condition. Finally I shall argue that while it is necessary for society to make its public facilities accessible to those who suffer from severely disabling conditions, something else must supplement this, namely, an attitude of "hospitality to the stranger."1 My fear is that without this attitude, they who pride themselves in making facilities accessible will unintentionally erect invisible--but all the more insurmountable--barriers in the path of the disabled: barriers of human alienation.

The Body as Statue

The first text I cite is taken from the Hebrew Bible. Psalm 32 tells us that the relationship between one's moral shortcomings and one's physical ailments is of human sin and divine judgment. Hence the psalmist believes the candid confession of one's guilt to God is the precondition for healing, whereas an attempt to hide that guilt from the Divine, only intensifies and perpetuates one's sufferings. The meaning of most of the psalm is painfully clear (if theologically dubious), but verses 3-4, in which the psalmist describes his own experience of suffering, has given translators ample opportunity to exercise their poetic fancy. One of the most graphic renderings is found in the Greek translation of the Hebrew Bible. A literal translation into English of this version of Psalm 32:3-4 reads as follows: When I kept silence, my bones waxed old through my roaring all the day long. For day and night thy hand was heavy upon me. I came into such great misery that my backbone stiffened.2

I take the strongest exception, for theological reasons, with the psalmist's claim that our sufferings are always caused by our sins.3 But I am gripped, for personal reasons, with his image of creaking bones and a rigid spine.

My second text is taken from Greek mythology. It is the story of Pygmalion, a sculptor who had such inflated matrimonial standards that no woman could win his heart or hand. Resolving to create in art what he could not find in reality, he carved a life-sized statue of his ideal woman. Like most idealists, he quickly fell in love with his own creation. However deviant, his devotion was so ardent that Aphrodite, the goddess of love, took approving notice and transformed his ivory statue into a maiden of flesh and blood. He named her Galatea and promptly married her.4

Now FOP is characterized by "the formation of normal bone in abnormal locations, namely the muscles, ligaments and tendons. Bone eventually replaces much of the voluntary muscle in the body, leaving the affected "patient" 'frozen' in position."5 In fact over the course of a person's lifetime he or she actually grows an extra skeleton, which gradually encases the entire body. I cannot but wonder if it was to this painful and debilitating condition the Greek translator of Psalm 32 was referring when he wrote: "...I came into such misery that my backbone stiffened." Nor can I help thinking that my Sarah is Galatea in reverse--a beautiful girl gradually turning into a statue."

For our purposes, the disease may be summarized as follows: first, FOP is a genetically inherited condition. Second, FOP involves the malfunctioning of the normal process of skeletal development. Thirdly, FOP is progressive. In Sarah's case it appears to be progressing faster than expected. She is now seven and a half years old. Her jaws open only a centimeter and she has a crossbite. Her neck, shoulders and spine are rigid. She can read and write and feed herself but cannot dress or bathe herself. She has trouble sitting in most chairs and increasingly is confined to a wheelchair, one custom-made for her rigid, contorted body. Her cognitive, social and fine motor skills range from average to superior, but her gross motor and daily living skills are drastically sub-normal. She wears hearing aids because the bones of the inner ear have fused.

The Alienation of the Disabled

Having highlighted the clinical features of FOP, I want to describe the sense of alienation felt by those who suffer from this or any other disease which produces such bizarre effects on the human body--an alienation also felt by the patient's family and friends.

The disabled and their loved ones are constantly reminded that they are "strangers"--not "strangers in a foreign land," as the Bible calls travelers and resident aliens, but strangers in their own land, and thus strangers indeed!" All parents must reflect at times on their moral responsibilities to their children--on how to cultivate wholesome habits, on how to inculcate worthy values, on how to administer just discipline. How do you reflect rationally on the special moral problems of raising a disabled child when the disability itself calls into question the underlying assumption of all ethical discourse that life can be rationally ordered? For the families of the disabled live with a constant underlying sense of the bizarre. They inhabit a nightmare which the morning light never dispels. They are aliens in the land of normalcy.

It may well be that this absurdity is felt less by the disabled themselves than by their families. Recently one of Sarah's friends tried to hold her arms locked like Sarah's arms. She did this with the evident intention to understand, not to mock. After a few moments she gave up in frustration. Sarah, wise beyond her years, said, "I'm used to it and she's not because I've never known anything else." Yet for one who has known the pleasure of being able to scratch one's own itches, learning to live with someone who cannot perform such routine activities brings about a deep change in character and world view. At least it did for me. Let me highlight three aspects of this change.

First, the attitude of self-reliance and can-do optimism which is so prized by we Americans quickly dissolved, and was replaced by a nagging sense of helplessness and personal inadequacy. I think to myself, "You have brought into the world a child whose life will always be difficult, often painful, and whose welfare you will often have to trust to complete strangers. You must be grateful for the contributions of these people, but are you not also humiliated by your dependence upon them?

Second, the joys of parenthood, while certainly not entirely eradicated, get clouded by a perpetual sense of regret for my situation, punctuated at times by spasms of outright resentment--aimed sometimes at Sarah, sometimes at my wife, and sometimes at God. Try as I might to suppress this resentment, the fact remains that Sarah's special needs often require me to put aside my own plans and projects. That might not be so bad if I had reason to believe my sacrifices would ultimately yield measurable benefits for my daughter. But Sarah has a disorder which, despite unstinting devotion on my part, will only get worse with time. Hence my feelings of resentment are compounded by feelings of inadequacy.6

Third, I am often overwhelmed by a sense of remorse or guilt. In part this is due to the knowledge that I am directly (though unintentionally) responsible for the sufferings of another human being. I felt this remorse for many months after Sarah's diagnosis, until I reflected that since her disease is genetic, wishing it out of existence would be equivalent to wishing her out of existence. That I could not bring myself to do. I suspect I am not alone among parents of disabled children in saying that my very personality has been deeply affected by the humiliating discovery of my own inadequacy, and by my remorse for those feelings of resentment. Parents of disabled children are not outwardly any more glum, bitter or mopey than the general population, but they have been stripped of the prevalent myth that every problem has a solution, every disease a cure. Parents of disabled children know that happiness is possible in this life but they do not imagine it exists in the eradication of pain and trouble.

Thus, the disabled and their families feel like aliens in American society. The disabled are alienated because they really are different, and painfully so, from "normal" folks. Their families are alienated by virtue of their disenchantment with cultural myths. In view of the fact that both feel not only physically excluded from many public facilities but spiritually alienated from a society which values the very things which are often beyond their reach, such as health, beauty and independence, the goal of making facilities more "accessible" will never suffice. It is a starting point, but unless it is accompanied by a thorough change in those alternate but equally debilitating attitudes which society generally takes toward its frailest members, heartless indifference and condescending pity, the disabled and their families will remain alienated, and all the renovations made on public buildings will succeed only in making society's "cripples" more visible. I intentionally employ this degrading term in view of its use, not too long ago, by a public official who was dismissed for expressing aloud an attitude which many still hold secretly. For I believe it is this widespread attitude, more than insensitive speech and inaccessible buildings, which causes the physically challenged and their families to feel like strangers in a strange land. What good is it to get into public buildings if you still feel like an outsider while you're there? What is the net gain of no longer being hidden away in shame, or, alternatively, exploited at freak shows, when you are wheeled out with great fanfare and displayed as the beneficiary of society's charity and enlightenment? It is all too apparent that many people are "concerned" about the disabled because the latter provide the former an opportunity to congratulate themselves on being "inclusive."

We may illustrate the point by quoting a passage from a sermon by William Sloane Coffin, Jr. His topic is racial equality but his title, "A Question of Belonging," is significant since persons with disabilities desire and deserve not only "access" to public facilities, but also a sincere and unaffected welcome when they arrive. Coffin writes: In Dark Eye of Africa, Laurens Van der Post describes a conversation with the governor of Java at a time when the Indonesians were pressing for the Dutch to leave. The governor could not understand. "Look what we have done for them. Look at the schools and hospitals...We have done away with malaria, plague and dysentery....We have given them an honest and efficient administration...Look at the roads, the railways, the industries--and yet they want us to go. Can you tell me why they want us to go?" "I'm afraid, replied Van der Post, "it is because you have never had the right look in the eye when you spoke to them?"7

I have seen the right look in the eyes of two of the leading authorities on FOP, Drs. Michael A. Zasloff and Frederick Kaplan. I have watched Dr. Kaplan examine Sarah with a "bedside manner" which blends genuine respect and affection with a determination to understand and combat her disease.

It is this attitude of hospitality to the stranger, this distinctive look in the eye, which the disabled and their families need from everyone. And it is the general lack of this attitude in our society which perpetuates the emotional estrangement of the poor and the broken. Indeed, it is important to realize that even some of those who vigorously advocate the "rights" of the disabled seem to lack this welcoming and respectful attitude for the people they try to serve. The barrage of "politically correct" rhetoric on such matters is only an attempt to conceal the guilty relief able-bodied people feel in the presence of those with disabilities. As one who spends a lot of time pushing a wheelchair, I am grateful for their efforts to furnish public facilities and ramps, lifts, widened toilet stalls, and convenient parking places. But I would still insist that in the final analysis it is not the stairs, but the stares, which make the disabled and their families feel unwelcome in public places. It is not being so drastically different from "normal" which alienates us from society, but being pitied, condescended to, and fussed over for being who and what we are. Nor is it, finally, having people attend to Sarah's "rights," whatever those might be, which overcomes this estrangement, but having them show by their affection, their sense of humor, and their matter-of-factness in our company that they are not repulsed by the grotesqueness of her disease or horrified by the reminder that the sorrow and suffering she now endures may one day be theirs as well.8

Footnotes

1. Cf. Thomas W. Ogletree, Hospitality to the Stranger: Dimensions of Moral Understanding (Philadelphia: Fortress Press, 1985).
2. See Alfred Rahlfs, Septuaginta (Stutgart: Deutsche Bibelgesellschaft, 1935, 1979).
3. It is sufficient to note here that the Bible itself rejects this view: the Book of Job is an extended polemic against it, and Jesus expressly denies it (John 9:3).
4. Ovid, Metamorphoses X.243ff; cf. Robert Graves, The Greek Myths, 2 Vols. (Harmondsworth, Middlesex, England: Penguin Books, 1955, pp. 221,212.)
5. Randolph B. Cohen, Jeffrey Tabas, Frederick S. Kaplan, and Michael S. Zasloff, "Research of FOP: Current Perspectives," The FOP Connection, No. 17 (Spring, 1992), p. 8.
6. Candor bids me to state that my wife, the Rev. Marilyn S. Hair, bears the brunt of Sarah's day-to-day care and has made far greater personal and professional sacrifices than myself.
7. In The Pulpit Speaks on Race, ed. Alfred T. Davies (NY and Nashville: Abingdon Press, 1965), p. 38.
8. I am indebted to Paul Wadell, CP, professor of ethics at CTU, for helping clarify the distinction between accessibility and hospitality, and...for helping me to see how...talk about the "rights" of the disabled can fool people into thinking that they have given them their due while still keeping them at arm's length.

Acknowledgment

Dr. Richard B. Steele is Co-Pastor of Trinity United Methodist Church of Brookfield, WI, and Associate Professor of Theology and Member of the Board of Trustees at the Milwaukee Theological Institute. He is a member of the Board of Directors of Stauros, USA. We are grateful to Dr. Steele and to the Journal of Religion in Disability and Rehabilitation (Haworth Pastoral Press, 10 Alice St., Binghamton, NY 13904-1580) for permission to use an edited version of this article. It originally appeared in the Inaugural Issue of the publication.