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Faith, Despair, and Disability

[Note: This article originally appeared in Journal of Religion in Disability and Rehabilitation, 1, no. 3(1994): 51-63.]
I tell you, my friends, do not fear those who kill the body, and after that can do nothing more. But I warn you whom to fear: fear him who, after he has killed, has authority to cast into hell. (Luke 12:4-5)

The hardship of living with a physical disability goes far beyond the limitations imposed by the disability itself. The consequences of having a disability can profoundly affect not only the body but also the mind and spirit. This is because so much of our sense of well-being is dependent on the way others perceive us and the way we perceive ourselves. Physical health is a great human need, but just as great is the need to sense that our lives have meaning and value. This sense of life’s meaning can be gravely threatened by the presence of a physical disability.

What does “meaning” mean? A sense that one’s life is meaningful comes from having a place in the world, a network of relationships and a position in which we can be productive. It comes from feeling that we can be not only on the “receiving” end of human interaction, but on the “giving” end as well. A sense of life’s meaning comes from being involved in a purpose that is greater than the self, and if faith is important to us, it comes from having a connection to God that we can experience as real. This sense of meaning in life is a genuine need that should not be underestimated; its frustration can have both emotional and physical consequences, and can be disabling in itself.

Having a disability can lead to the destruction of one’s sense of life’s meaning, not because the disability in itself in any way diminishes the intrinsic value of one’s life, but because the social consequences can be so profound. People with disabilities are often seen by mainstream society as “other,” in some marginal category, not whole, not fully human. They are thus often not treated as individuals, but as objects of fear or pity. Having a disability can render one dependent on others, threatening one’s sense of self-esteem. It can limit one’s productivity, leading others to underestimate the productive capacities one may actually still have. Having a disability can thus be socially isolating, creating a sense of rejection and fears of abandonment, even abandonment by God. Thus the social consequences of physical disability can leave one with a sense that one’s life has lost its meaning.

It is still amazing, even in the age of the Americans with Disabilities Act, how little this is understood by people who do not identify themselves with the concerns of the disabled. Even those most well meaning can sometimes exhibit a shocking lack of understanding. Jerry Lewis, a man who has done so much to raise money for muscular dystrophy research and to bring this disease to the public’s attention, has recently been criticized by a group of former poster children who now call themselves “Jerry’s Orphans.” He was interviewed about this on the television program “Prime Time Live” (September 3, 1992). In response to criticism that his approach on his annual telethon infantilizes people with muscular dystrophy and portrays them as helpless and pitiful, and that some of his former poster children have suffered as a result, Lewis replied: “While I’m playing to a hundred million people that think what I’m doing’s OK, I can’t worry about or dignify twenty, thirty people. I can’t; I haven’t got the time for that.” Two years ago, in an article in Parade Magazine, Lewis wrote that if he had muscular dystrophy he would describe himself as “half a person.” When asked on the television program if this is how he really feels about people with this disease he said, “They can’t run with me down the hall, can they? In truth, aren’t they given half? Haven’t they been left with half? If there’s a degree of measurement, are they whole?” It is true that Jerry Lewis has done much good in raising money for muscular dystrophy and providing people with financial and technical assistance, but how much of this good is negated because of an attitude that presents disabled people as incompetent, unable to lead productive lives, and ultimately as less than fully human?

People with disabilities are no different from others in that we need care for our souls as well as for our bodies. This is eloquently expressed in a meditation written by Bernard Ikeler, author of the book Parenting Your Disabled Child. Entitled “Getting Out of Bed in Gloomy Weather,” it is an effective portrayal of despair:

According to the radio meteorologist: Rain all day. Wind and fog. High around forty. Who needs a meteorologist? Even before I saw the sickly dawn, before I heard the despondent rain, my marrow and sap gave me the weather word. A little more stiffness here, a bit more pain there - I know what the universe has planned for today.

Breakfast over, Carol off to work, I creep back into bed. My morning handful of pills has made me nauseous, of course, but perhaps if I lie quiet for a few minutes.... The ugly taste in my mouth persists, and I am too depressed to get up and brush my teeth.

I again switch on the radio. The newscast drives me deeper and deeper into the blahs. Exploitation is so pleasantly reported. Brutality is described in such exquisite detail. Famine is so calmly accepted, and war so lustfully admired. I suffocate in a quagmire of disgust, anxiety, anger, sorrow. Thanks, but no thanks, for serving up this morning, God. Maybe you’d like to try again tomorrow. Today, the darkness in my bones and flesh, in my neighborhood and city, in nations across the world (your world, God, if you’re still willing to claim it) - is too much for me to face.

Numbed into total apathy, I turn up the temperature of my electric blanket, pull unconsciousness over my head....

One’s physical condition can indeed color one’s entire perception of the world. This perception then drives us to the question of theodicy, the question of “divine justice.” We question God’s goodness in having created a world of pain. Our faith may suffer, and we can be overcome by depression. This is a conflict within the soul. The condition of our bodies is very real, but it is when conflict reaches the soul that we question God and our faith starts to falter. This is perhaps the greatest danger. The limitations of our physical condition can be real and formidable, but it may well be the threat to the spirit that casts us into the deepest hell and brings up the deepest pain.

In the form in which it is usually asked, the question of theodicy is unanswerable. There is no rational explanation for how a God who is both good and all-powerful can permit such extremes of undeserved suffering to exist. But we make a mistake if we take this question at face value. First, the question itself anthropomorphizes God, and we could get into a lengthy theological discussion about whether the form of the question is even legitimate. More importantly however, the one who asks the question is not really asking for information about God. What the question really asks for is the possibility of a faith that resists despair. It is the need to resist despair, rather than abstract speculation about God, that drives us to ask the question of theodicy. Thus to address the question properly we need not to advance theories about God, but to look into the possibilities of faith under extreme conditions.

Unfortunately, faith cannot always restore our physical wholeness, which is naturally what we would first desire. Faith does not guarantee a reversal of our disability. Nevertheless, we have the right to ask for a faith that will preserve our conscious connection to God so that, if our particular disability does prove to be irreversible, we will at least have the strength to carry it. We can ask for such a faith, if we are prepared to meet the challenge it will present to us. For such faith is not won without a struggle, and having a disability does invite us to enter into a struggle with ourselves.

Of what does this struggle consist? It is a struggle for self-knowledge, which we gain through wrestling with our inner demons. The model for this struggle is Jacob’s wrestling with his mysterious “angel.” The Bible describes how Jacob overcame his fear of his brother by struggling with it over the course of one long, solitary night. Somehow, as a result of this straggle, Jacob acquired courage.

The inner demons with which we have to struggle are most usually fear and anger. These are inevitable aspects of the experience of being placed in a marginal category in relation to the rest of society. We therefore need to confront these reactions in order to gain self-awareness, which is a prerequisite for faith. At first our anger may be directed against ourselves, or against others. A more appropriate object for our anger may well be the assumption that only a life of perfect physical wholeness has value.

It is easy to condemn society, or even outspoken philanthropists like Jerry Lewis, for making this assumption. What we may not as easily see is the extent to which we buy into it ourselves. Perhaps we find ourselves feeling incompetent next to those who are physically whole; perhaps we feel some hesitancy about socializing with them or interacting with them as equals. Perhaps we assume that someone else can always do a better job. Our self-esteem may suffer, we may even reject ourselves, or experience a depression such as lkeler describes at the prospect of facing a day in which we feel powerless to perform up to the required standard. If this in any way describes our experience, it may be worth asking whether at some deep level we somehow agree with the attitudes we most strongly criticize, that only people who are physically unimpaired lead valuable lives. If we find that we are attached to such a belief, we may need our anger to enable us to separate from it. In this sense Jerry’s Orphans are right in protesting openly the attitude that people with disabilities are not whole human beings. We need to protest it, if only to avoid believing it ourselves.

It is very difficult to confront the twin demons of anger and fear. Sometimes our fears are well-founded. Nevertheless, as Jacob discovered, running from our fears only makes us weaker. Allowing the awareness of our fears makes us stronger in that it increases our self-knowledge as well as our ability to act in spite of our fears. Fears that are hidden have control over us, robbing us of our freedom. Fears that are seen invite us to confront them on an open field. We may not know what course the struggle will take, but like Jacob, we can refuse to let go until we obtain a blessing.

Physical disability is just one of the many human hardships that invite us to enter the struggle for faith. As we have seen with Jacob, the rewards of the struggle may be great. When we enter the struggle, however, we take a risk that is just as great. The struggle is essentially a struggle for awareness: awareness of self, awareness of others, and awareness of God. Our first awareness may well be of the magnitude of the obstacles facing us. Instead of bringing us faith, it may only increase our despair. Can we find a faith that will sustain us even when we see how powerless we are, and how strong our reactions are to conditions we seem unable to do anything about? This is the real question of theodicy. It is not really about the abstract nature of God but about the existence of a faith that gives us the courage to live, to face the difficulties that life throws at us, no matter how great.

The Bible is a powerful book precisely because it intends to preserve and communicate such a faith. This faith, however, is hidden, much as the light of day is hidden just before the moment of sunrise. To find it we need to persevere through the darkness of the search. We need also to wrestle with the Bible’s symbolism, to wrest the message of faith from underneath.

The miracles of Jesus are a symbolic representation of this faith. Ironically, they have often been used to undermine the faith of people who have disabilities. Through a fundamental misunderstanding, these miracles have been interpreted to mean that faith proves itself in physical wholeness. If we interpret the miracles in this way, the faith we obtain is the type of faith expressed as belief in the power of the physician. Today modern science might call this a transference or placebo effect. This is a type of faith, and can rightfully be called faith. It is questionable, however, whether this is the faith that the Bible intends to teach.

A faith that gives us the courage to live must rest on more than human suggestibility. Jesus did say “According to your faith let it be done to you” (Matthew 9:29), but he also spoke of oneness with God, our unbreakable connection to the source of all life and love. The Greek pistis means belief, but it also means much more. The faith that gives us the courage to live must come from something deeper than belief; otherwise the struggle for awareness would have no point. Faith understood as belief diminishes our awareness of life’s cruelties, substituting instead an image of that which makes us feel comfortable. Such a faith leads to peace in the short term, but it is precarious. The faith that is given in the biblical message lies on a stronger fotmdation. It is not based on our beliefs, but on the activity of the divine Spirit. Communicating such a faith is exceedingly difficult, and so Jesus chose the language of miracles.

Biblical scholarship has greatly advanced over the past several decades, and we now have more knowledge about the historical, social, and religious background of the time in which Jesus lived than was available to many previous readers of the Bible. One thing we know is that Jesus’ miracles were not unique. There were other miracle workers and charismatics active in Jesus’ time who accomplished similar healings. What was unique was Jesus’ interpretation of his miracles. Unlike other healers of the time, Jesus used his miracles to point to the kingdom of God. Healing was not in itself his primary intention. Jesus did not roam the countryside trying to heal every disabled person he could find. What he did was rather to preach unfailingly the kingdom of God.

Today we have difficulty with the term “kingdom of God.” We do not like to think of God as a monarch. This is, however, the symbol the Bible uses, and so we cannot dispense with it easily. It is in any case helpful to see that even Jesus did not use the idea “kingdom of God” in the way it was generally understood in his own time. In Jesus’ time “kingdom of God” was an apocalyptic symbol signifying the imminent close of the age. Jesus, to the extent that he was a product of his times, did think in apocalyptic terms. But he went way beyond the given apocalyptic framework in presenting the “kingdom of God” as an expression of the unbreakable connection of God to every individual human life. Thus he gave many parables describing how one discovers the kingdom of God through faith.

Faith, not healing and miracles, is the true content of Jesus’ teaching. Nowhere is this more apparent than in the Gospel of John. In that Gospel Jesus explicitly criticizes a faith that is based on signs and miracles alone (John 4:48, 20:29). Such faith, while genuine, does not transform us from within; it does not lead us to participate in the power of divine love. Faith as belief may satisfy our need for security, but it neither challenges nor expands us. It may therefore actually obscure the deeper faith that Jesus intended to convey. Thus, in the fourth Gospel Jesus treats such faith with suspicion.

It is vitally important for us to capture a sense of the meaning of the deeper faith that Jesus taught apart from its symbolic mode of expression in the Bible. There is, fortunately, one place in John’s Gospel where Jesus states the content of this faith directly:

“They who have my commandments and keep them are those who love me; and those who love me will be loved by my Father, and I will love them and reveal myself to them.” Judas (not Iscariot) said to him, “Lord, how is it that you will reveal yourself to us, and not to the world?” Jesus answered him, “Those who love me will keep my word, and my Father will love them, and we will come to them and make our home with them.” (John 14:21-23)

Jesus states here that those who keep his “commandment” will receive a direct response from God. This is the basis of biblical faith since the time of the original covenant, and it is the foundation upon which the truth of Jesus’ ministry, including his miracles, stands or falls. What is the “commandment” of which Jesus speaks? “This is my commandment, that you love one another, as I have loved you” (John 15:12). Throughout his ministry Jesus taught a love that exceeds our most common forms of love, which usually center around our self-interest. Jesus taught a love even for those who cannot offer us anything in return, and even for those who may be antagonistic toward us (Matthew 5:44-48). The love Jesus taught is the special kind of love that exceeds the limits of our self-interest. Only such a love can be called “spiritual.”

This message, that devoting ourselves to non-self-interested love brings a divine response and is thus the underpinning of faith, is the ultimate content behind everything Jesus said and did during the course of his ministry, including his healings and miracles. This message, and not the healings themselves, is the substance of his preaching. But can we immediately find this encouraging? Jesus calls love a “commandment,” but how can we be commanded to love in a way that seems so difficult for us to attain? It is no wonder that many of Jesus’ followers focused on the outward signs rather than on the core of the message itself.

For us today, however, “commandment” is a better symbol than “miracle” for Jesus’ message of faith and love. We may shy away from the notion of “commandment,” but it is helpful to see it as representing the element of challenge contained in this love. Non-self-interested love indeed challenges us to exceed ourselves, to grow beyond the customary and familiar, to participate in creating a unity of the heart and spirit. Love as commandment, or as challenge, says to us that we cannot enter this participation without a struggle.

We have already encountered the necessity for struggle in the search for faith. As exemplified by Jacob’s struggle with his angel, the spiritual struggle is a striving toward awareness, and this in fact proves to be the path toward non-self-interested love. Love is ultimately based on awareness. We need first an awareness of ourselves, if only so that we can adequately distinguish ourselves from the greater world around us. The awareness that leads to love is ultimately an awareness of a reality beyond ourselves, as expressed in the individuality of others and eventually in our experience of God.

The nature of love is awareness. Without awareness, no love is possible. Without pain, no awareness is possible. Without the pain of accidents and frustrations, we would not even discover that the world is more than simply an extension of ourselves and our own desires. Without the knowledge of pain, we would never develop a capacity for compassion, which means feeling with others. Without pain, love would be unattainable. This brings us to a very sensitive theological point. As far as the question of theodicy is concerned, regardless of how we would like to think about God, the divine purpose of love’s realization could never be fulfilled without the existence of pain and suffering. We need to keep this in mind when experiencing the attraction of theologies that paint a picture of God as totally uninvolved in human suffering. Such theologies may satisfy our desire to see God as a totally benign and sympathetic personal presence, but they render God irrelevant to the tragedy of our experience, portraying God as at best a helpless spectator unable to do anything but grieve along with us. If God is love, then God can neither will the existence of evil nor wish to inflict pain. Nevertheless, something in the nature of love itself requires the existence of pain in order to effect its realization.

There is a deep mystery involved in the question of God and suffering which the usual form of the question of theodicy totally obscures. The New Testament theology of the cross teaches that in some mysterious way, pain and God are connected. Jesus was willing to drink the dreaded cup only because he knew it was his Father’s will (Matthew 26:39); otherwise, he would have wished to escape it. Jesus needed to know, and did know, that somehow his fate was consistent with God’s will for him. This does not mean that God wants us to suffer; that is not a description of God but of an evil person. But neither can we say that God does not want us to suffer. We cannot adequately describe God in such essentially human terms. In this context “will” cannot mean the desire of a person-like being, but refers to the element of necessity in the unfoldment of love. Because of the nature of love, suffering does play a part in the unfolding of the divine purpose.

This should be cause not for anger or despair but for hope. It means we are not alone in our suffering. Evil is not an autonomous principle that eludes even the power of God. If we have the courage to stand at the site of our own cross, we may be assured that God stands there with us. God is not a helpless spectator to our pain, unable to offer us anything but tears to mingle with our own. Because God is involved with our suffering, we can receive a divine response from within it. The Bible teaches not only the cross, but also resurrection. The principle of resurrection is that even from death, life can emerge. From any threat to being, a new being can arise.

Life emerges from death through the creation of greater and deeper levels of awareness. Awareness is the fruit of spiritual struggle, and the path to love. Once we know the existence within us of a love based on an awareness that takes us beyond ourselves, we can trust that in some way it will find a divine response. This is faith, the truly spiritual faith that the Bible comes to teach us.

Beyond this point a theological exposition cannot go. The specific transformation of the heart and the specific divine response to it must be left to each individual in his or her particular search. But one can point to the possibility of such faith, and the conviction that devoting oneself to the struggle for it keeps one’s conscious connection to God alive and preserves one from being victimizl by the despair that results from believing one has been abandoned by God. We are in the realm of pure faith now, and no logical or scientific proofs may be given. But this faith is more than just a “leap”; it is more than just belief. It is based on the assurance that love always responds to genuine love, an assurance we can feel at the very core of our being.

At this point we have reached the limits of our exposition, and so I would like to try to clarify the meaning of this faith by offering a personal anecdote. This concerns something I learned about faith from Norman, a young man who was dying of AIDS. I visited Norman in the hospice where I work. By the time I saw him he was very sick. He could not move from his bed and he needed an oxygen mask to breathe. He could hardly speak. Yet in spite of all his physical limitations, I could see he had a great capacity for love. He showed me love by letting me know how much the beauty of the music I shared with him meant to him. I was surprised by the peacefulness of his spirit in spite of his physical discomfort and his knowledge of the imminence of his death.

Norman died only a few days after I saw him. I wanted to know more about him, and specifically how he was able to deal so well with his fear of dying. Certain comments by people who knew him suggested that he was no stranger to this fear; yet he seemed to come to terms with it, and even remarked about what a blessing it is to meet death without fear. Some time after his death I began to ask questions of those who knew him. I discovered some interesting things about Norman. He, along with his family, had become devoted to an Eastern guru. He had been practicing certain meditative exercises originating in Eastern traditions, whose purpose was to help one prepare for death. I studied some of the writings on which these practices were based and which Norman had read, but I found nothing transforming in them. I concluded that while these teachings and practices may have helped Norman in some way, they could not have accounted for the crucial difference in him that helped him come to terms with the prospect of dying.

One thing I subsequently learned did, at least for me, adequately account for the change. It was something one of the nurses who cared for Norman told me about her experience with him. I know this nurse well. She is a consummate professional, with a warm, loving heart and an incredible capacity for compassion and empathy. Usually it is she who ministers to those around her. But she told me of one time she came to the hospital upset about something that was happening in her personal life. She would not have offered to share her personal concern, certainly not with a patient. Thus those around her did not notice that anything was wrong. But Norman, as weak as he was, did notice. Norman then gave her the chance to talk about it. He offered her the love that comes from awareness.

Somehow Norman must have struggled within himself to reach the capacity for this love at a time when most people in his position might feel needy and disinclined to be giving. I do not know the course of his struggle; I saw only the fruits. But I believe it was his love more than his esoteric practices that saved him and brought him a divine response that enabled him to cope with his fear of death.

This must be an example of what Paul meant when he said that nothing “in all creation, will be able to separate us from the love of God in Christ Jesus our Lord” (Romans 8:39). Perhaps to Paul’s list of “rulers” and “powers” we may also add even the most devastating form of disability. Paul, following Jesus, expresses the faith that nothing in all creation can absolutely cut us off from a love that conquers despair. The path is not easy, but we do not have to do it all ourselves. “The Spirit helps us in our weakness” (Romans 8:26): as our struggle opens our hearts, we f’md room for the working of the divine Spirit.

Despair is the state of not yet seeing the possibilities of love in a tragic situation. It is not a condition of being loved less. There is never a time in our lives when we can say that God cannot respond. God responds to the divine image in us, the image of self-transcending love. We need not realize this love to perfection before we can find a response; we need only be on the way. And then we wait, until our own movement is met by the movement of the Holy Spirit. Love will always respond to love. This is the heart of biblical faith, and the principle that transforms the question of divine justice.