A Spirituality of Being: Women with Disabilities

I am a woman who has lived with cerebral palsy for 50 years. I am also an Episcopal priest who has studied classical Christian spirituality and who seeks to live it out in my daily life. I grew up in the Church and have given my life to God, yet I have experienced discrimination and oppression. The spiritual journey continually transforms both myself and my experiences, allowing me to Become more than I was as a disabled woman.

Studies have shown that women with disabilities are doubly and triply oppressed by negative prejudices and stereotypes.1 Society places a higher value on physical appearance in women than in men. Disabled women "are encouraged to be helpless, nonassertive, non-sexual, dependent, grateful and apologetic for a less than perfect body..." 2 It is doubly painful for women with disabilities to face those aspects of ourselves which others have labeled unacceptable, wrong, deformed or deviant. How can one ever be "normal" when one is defined as imperfect? How can one relate to healing and wholeness when some "religious" people only see healing as a physical cure of the disability. How can disabled women begin this transforming spiritual journey?

In classical spirituality the care of the soul was the essence of coming to "know thyself." 3 Soul is considered the essence of human personality and related to the body. Early spirituality interpreted biblical scriptures in light of Greek philosophy, which tended to divide human beings into body and soul. The body was intrinsically evil. Thus a negative attitude towards one's body was an easy projection toward the disabled body. Spirituality has to do with integrating body and soul into a unified whole and understanding the body as good. How we see our disabled bodies determines the health and growth of our spiritual life. Caring for one's soul enables one to recover the sacredness of life, and to live with the paradoxes of being broken yet whole. Spiritual direction empowers one to take back what has been disowned and to find deeper respect for what is actually there. The mystery of suffering can become the source of one's healing.

There are many women with disabilities who have no idea of what it means to integrate disability. They see their disability as larger than life, letting it define them rather than being an integrated dimension of living...it is dragged along as a heavy weight and may be used to batter self and others, preventing personal and spiritual growth. It is important to understand one's disability, its causes and consequences. Then we can begin to integrate our experiences, recognizing that suffering, disappointment, hurt and rejection are not exclusive to us but are universal conditions. Understanding one's disability also means exploring the dimensions of one's self-image, doubts and fears, dreams and hopes. Many women with disabilities develop only a fraction of their potential. We are familiar with our limitations...may use them as the boundaries within which we move. Yet we have been created with potentialities beyond our imagination. Spirituality is one way of discovering the possibilities, while integrating the limitations of one's disability.

The spiritual journey always includes: two constant pulls: forward in faith to the unknowns and backward to the slavery of the familiar. Spirituality allows us to break free so that in the transition between those two we find ourselves and our creativity." 4 The purpose of the spiritual journey is to move us from our familiar world into the abyss, and out again into the light. Spirituality frees us from all those things which encumber us.

Movement through the spiritual journey requires us to Be who we are and to Become all we are. That requires knowing ourselves as more than our disabilities, living with them, rather than suffering from them. We are "Becoming" more fully who we are as we journey. This is the process of encountering God/Self at the center of the struggle, and discovering the potentialities and abilities which are greater than our disabilities. Women with disabilities come to know who they are as women, who happen to be disabled. Finding wholeness involves the transformation of our spiritual and psychological self. The spiritual journey "is a journey into darkness as well as light, into strangeness as well as intimacy, and in which we are made new." 5

Women with disabilities have to live with the limitations imposed on them by their disability. Unfortunately, they are expected to accept the negative attitudes, the barriers, and the spiritual blasphemy of others. The road to discovery for one who is a person with a disability is difficult and painful. Disability is affected, for better or worse, by the spiritual dimensions of one's life. The pain of being disabled is exacerbated further by the pain of rejection. Soul-pain magnifies physical pain, while physical pain magnifies soul-pain. Pain can overwhelm and dominate our world. When this happens the need for the reconciling and healing love of others becomes critical. People in pain often experience "abandonment by God" and isolation from the church. Too often they decide that disability invalidates any possibility of belief. Faith should provide a background of words and responses which create a framework of support. Communities of faith can develop from people committed to sharing the journey with each other.

The spiritual journey begins with the willingness to enter the abyss within to find ourselves. This is to encounter the desert, where we depend upon our Creator to nourish and strengthen us. Here, in the depths of our Being, we can listen to the voice of God/Self, who continually calls us to Become all we have been created to Be. This encounter gives meaning and purpose to our history, provides direction for our present, and calls us toward a future.

We encounter our history in the abyss. We must look at the experiences of the past. We repress many feelings and try to bury things that are not dead. Unresolved issues surface in disguised ways as anger, passivity, and as doubts of our self-worth and real abilities. Negative attitudes rise out of the debris of painful memories which often include ridicule, rejection, isolation. We encounter the loneliness and anger of being disabled, and we feel more deeply the yearning for affection, acceptance and affirmation of who we are beyond our disabilities. Avoiding these feelings may leave us stranded in a spiritual wasteland.

If we remain victims of our past we continually rebel or react, or we appear to "accept" but act resentfully toward the world for imposing the "unacceptable" on us. But, we are not called to be victims. The spiritual journey transforms any prior need to be the suffering victim and allows us to take our place in a world which knows suffering universally.

Too often we fail to expand the boundaries of limitation because we have learned to say "I can't." We are what we believe we are. If we believe ourselves to be dependent, helpless, useless, then we will be or become so. When we say "I can't", we are saying we will not risk defeat or pain, we will not enter the struggle, we will not encounter God/Self. Life will pass us by without our having experienced its fullness. To say "I can" takes a certain security which comes from within and is nurtured by the unconditional love of God/Self and the love of one who walks with us on the journey.

Several years ago I was asked to explore the dimensions of spirituality with a group of women with disabilities. Each of them was lost in a desert, their spiritual journey dead-ended. They were stranded by feelings of shame, anger and grief. They had little understanding of their disability other than being defined by it, they had not integrated their disability into the totality of their personhood, and they were experiencing the various stages of grief. They benefited enormously from the process of grieving the loss of hoped-for or perceived images and abilities. I have found that frustration with barriers, discrimination and oppression contribute to the loss; women who are disabled go through the grief cycle many times in a lifetime. It is a significant part of the spiritual journey. We must understand our grief if we are to move through it and beyond it. We can feel locked into the repeating pattern, especially if everyday life is structured around the reality of loss because of the disability: impaired or missing limbs, mobility issues, access issues, limited choices, exclusion from equal opportunity and social occasions. We are often in the desert or the wilderness. Spirituality can enable us to understand where we are. We can re-envision isolation and loneliness as a gift which leads to deep, inner healing.

The search for identity in women with disabilities is a quest to resolve the inner conflict between spirit and flesh, between idealized self-image and physical reality, between being a sojourner or a victim. It is the conflict of being treated as a child when you are an adult; of being judged as special or condemned, chosen or ignored. Until these conflicts are resolved, you may not be able to convince others that you are a companion on the same journey. Resolving these conflicts requires accepting the feelings, fantasies, needs, attitudes and fears that are a part of personality. We are all wounded, some with visible wounds associated with physical conditions, others with invisible wounds of heart or soul. Spirituality cannot develop unless this woundedness is acknowledged and brought before God. As we wrestle with our limitations, we encounter the One who gives us strength to live with, rather than suffer from our reality.

The pain of living with a disability can be like a hurricane, battering the soul. To carry this anger alone is to suffer, but it is important to vent this anger. We need to know it is alright to question and wrestle with God about the meaning and purpose of our lives. I was angry at having cerebral palsy and angry with the attitudes of others. I screamed all of this at God one night, cried for hours, finally fell asleep. I awoke feeling very still within. I had "wrestled with God/Self" and been changed. I began to see my woundedness as a part of the whole, of who I am.

In the darkness of the soul journey, we are confronted with our fears and doubts, facing an agonizing struggle. Spiritual directors can help to pull the shadows of doubt and fear into the light. These feelings can be turned into new insights and new understandings. Only when we touch the woundedness of our lives that we can move toward healing and toward Becoming.

We can accept our limitations as given and celebrate life, or we can be victims who suffer with as opposed to living with. We can choose how we will get on with the business of living when the unexpected and unwanted occurs. Our choice is in how we react and it arises out of our willingness to Be who we are and Becoming all we are meant to Be.

An encounter with God requires a personal relationship with God/Self where we are able to talk about Forgiving God/Self. We cannot accept forgiveness from God/Self unless we forgive God/Self, acknowledge that we live in an imperfect world, while entering more deeply into the mystery of God. When we forgive God for our disabilities or limitations we become free to integrate those parts of ourselves of which we have been ashamed. We accept them as part of God's creation not as mistakes or punishment and through this we achieve wholeness and find new freedom. Forgiveness is an ongoing process, it requires activity on our part, reflecting on what has happened to us, naming it, and working toward letting go. We become free of wounds only when we recognize them, name them, and forgive both God and the persons responsible, including ourselves for inflicting them.

Looking at the pain within can be a "dark night of the soul" experience, but it is only in facing the pain that we see it for what it is; when we call it by name, it loses it's power. Pain can be destructive anger or transforming power. My own spiritual journey meant learning to understand cerebral palsy and integrating my limitations. As I moved into and through the pain I began to see my gifts, to grow spiritually and Become more fully who I am. This process was the beginning of re-defining myself as a woman who is a priest, a mother, a student, who happens to be disabled. Disability is no longer my defining characteristic; it is not who I am.

It is through loving oneself, through living fully with that which cannot be changed, that one becomes empowered to change that which can and must be changed from within. There are many, many women who live with disability and that should be the message of a lived out hope. It is faith which allows us to live with the reality of our lives. Faith lived out may be most visible in persons with disabilities who endure the struggles, accept the challenges and continue to face life in all its ambiguity.

Unfortunately there are many people who interpret faith as the prerequisite for removing the disability, which is entirely different than being healed. Physical healing is not what most persons with disabilities desire. Rather it is spiritual and emotional healing-acceptance, respect and opportunity. Healing comes when persons with disabilities adapt to the environment and to their limitations, and live full and meaningful lives. Healing is living with our limitations. It is claiming our faith that enables us to live with the reality of brokenness and imperfection. To be healed is to live in faith and hope, recognizing and believing that new life can come out of suffering and loss. Healing provides spiritual well-being, yet leaves us to face the setbacks and struggles which limitation inevitably brings. At times we will encounter the desert and become depressed and discouraged but healing is an on-going process and we must be patient.

We are called to live fully and creatively. How we do that depends upon our being reconciled to ourselves as we are. If we live fully in the present, we have accepted ourselves for who we are, and greet each moment in time with our full presence. This is life lived in hope...and expectation.

The ways of God are a mystery. You and I have to be able to stand in the center of that mystery, sometimes in silence, sometimes angry, but together. To do that, each of us must be able to touch our own woundedness and know God/Self there. We are then empowered to Be who we are as women...who happen to be disabled.

Footnotes

1. Cole, Sandra S., "Women, Sexuality and Disabilities," in Women and Therapy (New York: Haworth Press, 1988) 284.
2. Ruether, R.R., New Woman New Earth: Sexist Ideologies and Human Liberation (New York: Seabury Press, 1974) 15.
3. McNeill, J.T., A History of the Cure of Souls (San Francisco: Harper & Row, 1951).
4. Brueggemann, W., The Prophetic Imagination (Philadelphia: Fortress, 1978).
5. Davies, O., "Mystics Rediscovered," The Tablet, 12/16/89, 1461.

Acknowledgment

The Rev. Nancy J. Lane is Executive Director of Disability Awareness: An Empowering Ministry. She is an Episcopal priest who conducts retreats and workshops, and lectures on Christian spirituality. She is a member of the Board of Directors of Stauros, U.S.A. We are grateful to Rev. Lane and to the Journal of Applied Rehabilitation Counseling for permission to use an edited version of this article. It originally appeared in the Winter, 1992, issue of the magazine.