A New and Beautiful Design

Only a week had gone by since my summer research project had begun, and already I was unconvinced by the arguments I was beginning to hear. I was initially excited to expand my knowledge of disability–that’s why I agreed to be part of the project. The professor with whom I was working, Dr. Christopher Smit, had challenged my assumptions about the treatment of difference within society, and more specifically about how Christians had historically approached people with physical and mental disabilities. However, I was unsettled when, on our first day of work, he suggested that the church had often painted disability in a way that implied brokenness and sinfulness, thus creating a divide between disabled and nondisabled members of congregations. Having been disabled his entire life, Smit had come to this conclusion, in part, through personal experiences. But I was just beginning to contemplate such matters.

Even though I was pursuing a career that would involve ongoing interaction with the disabled, I reluctantly began to admit to myself that I was uncomfortable with this prospect. Such people intimidated me, and so I quietly hoped this research project would help eliminate some of my discomfort. But already after the first few days, this hope seemed unrealistic. Smit’s ideas were foreign to me, farfetched, I thought, and maybe even a little ridiculous. From his perspective, people with disabilities are viewed as helpless, childlike–as pitiful images of human brokenness. He explained that Christians with disabilities are often treated like they are “more fallen” and consequently in need of “more grace” than those who are not disabled. His experience had provided evidence of this. My experiences were radically different.

I felt that Smit was accusing also me of holding such prejudicial views. Yet I didn’t feel that I looked down on them or treated them differently than others–I certainly had never thought that disabled people needed more grace than anyone else. Even so, I was looking forward to increasing my knowledge of disability through disagreements and dialogue. If I did not have a solid understanding of what it means to be disabled, I would not be successful in my chosen field of speech pathology.

Yet, after three months of researching the available literature on the topic, critically reading biblical accounts of disability, and countless, difficult discussions, I felt no closer to understanding very well what it means to be disabled. What I did realize is that disability is a political, cultural, and spiritual phenomenon that is experienced idiosyncratically. Consequently, the answers we give to questions about disability can and should be answered in different ways. Why does disability exist? Where does it come from? Why does God allow it to happen? Is disability punishment for sin?

The very tone of these questions was leading me to answers that ignored the fact that people with disabilities are more than their physical and mental condition. By focusing solely on disability as a phenomenon, I was failing to value the whole individual. I wasn’t recognizing that people with disabilities have unique personalities and gifts through which they contribute to society. To move past this problem, Smit and I attempted to formulate new questions. In his essay “Liberate Yourselves by Accepting One Another,” Jurgen Moltmann suggested that

we stop focusing only on the problems of the other and stop labeling him or her in terms of a problem by referring to them as “disabled.” Instead, we need to begin to discover in the “disabled” person another selfhood and honor her dignity, for she is in fact just like you and me. (105)

Rather than trying to figure out the “whys” of disability, we instead began to ask questions about our interactions with those who are different from us. From these new questions we began to see that the way we treat those who are different stems from our own discomfort, ignorance, and fears. Too often we lack the willingness to interact with people who are not like us, and, consequently, we often forfeit opportunities to gain valuable knowledge and insight. Our avoidance of people with disabilities thus determines the way we perceive and treat them.

As I reflected on the way that my perspective of disability was changing, I imagined the design you see when you hold a kaleidoscope to your eye. The initial pattern is simple with a blend of colors. As you peer through the lens and begin turning the wheel, the arrangement changes. Brilliant, new colors invade your line of vision, exploding into each other. The crystals collide, creating intricate new patterns. The more you turn the wheel, the more beautiful this design becomes. When you finally stop turning and remember the image you initially saw, it can seem dull by comparison.

Similarly, what I initially believed to be an acceptable view of people with disabilities was increasingly revealed as incomplete, dull. I learned that my so-called “normal” ideas of those who are different from me were actually offensive and hurtful.

  I learned that my so-called “normal” ideas of those who are different from me were actually offensive and hurtful. I failed to recognize that I should be in community with these individuals. As much as I can give, so can people with disabilities give back.  

Was I overly friendly, too willing to help, and yet unwilling to learn anything from those I felt needed me? Had I unknowingly belittled, objectified, and pitied them? I failed to recognize that I should be in community with these individuals. As much as I can give, so can people with disabilities give back. It is what Smit calls “true dialogue,” an active participation from all members of our community, disabled and able-bodied alike.As Christians, our understanding of this type of community could (and should?) be different from that of the secular society. Our Creator intended for all of creation to be in perfect harmony with Him as well as with each other. To reach this shalom, this place where all are united, requires each of us to change the way we perceive one another, especially those who are different from us. It demands continuously bridging the gaps among different races, genders, sexualities, and physical or mental capabilities–appreciating similarity yet embracing difference.

Shalom requires inclusion of all and contribution by all. However, this work does not offer an immediate transformation. Working towards shalom is a lifelong process. Shalom is also a term that refers ultimately to life in heaven as well as to the ways we try to approximate heaven already in this world. For now we work towards unity while on this earth, recognizing that true shalom will not be achieved until Christ’s return. Of course, it’s also true that we do not know now what the fullness of heavenly shalom will look like. We don’t know if heaven will include the bodily features that distinguish us now (including our various disabilities). What we do know is that we are called to pursue shalom already now, which on this earth means inclusion for all members of the church.

The need to adopt a new perspective of disability opens a floodgate of questions. It is obvious that changing our treatment of those who are different from us encompasses first altering our understanding of difference itself. Rather than defining it as freakish imperfection, we need to see difference as a beautiful twist to an average community. But where does this process begin? How do we get our crystals of thought to shift, like the kaleidoscope, into a more beautiful design? Perhaps a good place to start in this attempt to work toward a better, more beautiful design is by looking squarely at the unsightly spectacle of past patterns of discrimination within the church.

Smit and I spent a good deal of time reading and analyzing the history of disability discrimination. Smit sums it up this way:

And so our walk became a sort of pseudo history lesson. I explained to Rosemarie how people with disabilities, in Europe first and then in the United States, had lived through some terrible history, some dark days of existence. As late as the seventeenth century, people with disabilities bore the lethal burden of being believed to be possessed by demonic spirits. The spasticity of what we would diagnose today as being cerebral palsy was often seen as an uncontrollable soul, wanting to get out of the skin, to escape the being that held it inside.

Others, although a quite smaller number, were thought to be sent from God, as a sign of his awesome, yet destructive power.

Either distinction, I explained, led to the death of the person with a disability–killed by scared or ironically honor-filled Christians. I also mentioned that no matter if the disabled person was seen as being the creation of demons (i.e., the devil) or God, both understandings sought to explain mental and physical differences based on spiritual conditions. Both classifications ignored the possibility of sameness between the disabled and nondisabled. In other words, by labeling the person with a disability as being un-Godly, or hyper-Godly, these folks were, perhaps unknowingly, separating themselves from the disabled folks they were trying to comprehend.

“It is significant to understand that this was a spiritual division,” I explained. “All I am trying to explain here is that throughout human history, even modern Christian history, there have been spiritual, and then cultural, divisions between those folks who have different bodies and those who have ‘normal’ or healthy ones.”

Society has surely progressed from the days when disability was seen as a sign of demon possession. The church, however, has struggled to make such a progression, and is stuck in a rut formed by selective readings of biblical accounts of disability and healing. These biblical accounts can be read to suggest that people are disabled as a result of sinfulness (Matt. 9:1-8), lack of faith (Luke 7:37-50), or even as evidence of God’s power over His creation (2 Cor. 12:9). Although there is evidence of some of this within the pages of the Bible, we should, nonetheless, be cautious when applying such rubrics to current day experiences of disability.

Throughout history, the church has held the inescapable, biblically rooted idea that disability and the identity of the individual are connected. As a result, Christians with disabilities have often been excluded from participation in the community of believers.

Our communities are built and centered around our similarities. We unite most easily and bond most closely with those who share the “big” things with us: our personalities, values, and faith. However, within these communities, there is obvious differentiation from person to person. There exists diversity in our upbringings, families, personal goals and interests, past experiences and current lives. For the most part, we celebrate and honor these differences. We have even learned to accept differences of gender, race, and sexuality. But for whatever reason, we struggle with the presence of disability. Rather than seeing it as an addition of vibrant color to the community, we let physical and mental difference divide us. We have a hard time believing that people with disabilities view life the way we do. This creates two communities within the church, disabled and nondisabled. Such a division can be interpreted as contradictory to the core teachings of Christianity. As Glenn Whitlock writes:

The covenant points to the higher law–to that which binds us together. It means that all the people of God are our brothers and sisters, and that we are bound together in the way that family gathers together around each other, despite differing personalities. (52)

The most significant outcome of this problem of division is an expression of superiority from the nondisabled community. This superior feeling is not necessarily an outright “I’m better than you,” but reflects the idea that the disabled person is helpless and needs to be cared for. The central teaching to love your neighbor reinforces this by focusing on the responsibility of the “stronger” members to love and care for the “weaker” ones. Of course, I am not saying that those who have physical or mental limitations require no assistance. Help is needed, but needing extra help does not reflect helplessness. Neither responsibility nor obligation should be the motive for helping or caring, but instead, the demand for hesed. Johanna Van Wyck Bos helps distinguish what is meant by this complicated idea:

Hesed is difficult to translate with one word because it is so rich in meaning. It includes God’s love and kindness, God’s constancy and devoted attention to the covenant community and the creation. …As God devoted love to the community, so it is expected that the members exhibit the same quality in their common life. In behaving toward one another with hesed, the members of the community show that same abundance, the extra that is required of those who know themselves to be in covenant with God. (11-12)

To be in hesed involves recognition of humanity in the other, as one equally created in the image of God. It is when we are fi- nally able to acknowledge this underlying similarity in all humanity that our differences become insignificant.

Hesed becomes a tricky concept when applied to the world of disability. The demand for inclusiveness and sincere devotion to others is often twisted and thought to pertain only to nondisabled individuals.

 Claiming that those with physical and mental limitations are only influential through their presence is very problematic. By allowing only passive involvement, we strip those with disabilities of active participation. They are viewed merely as inspirational. But those with disabilities are more than metaphors.  

This mindset stems from the assumption that “one cannot be both a carer and someone in need of care at one and the same time” (McCloughry and Morris 87). This false understanding not only increases the divide between the disabled and nondisabled, it underestimates the ability of those who are physically and mentally different to contribute to society. Automatically, they are once again excluded from active participation, rebuilding the very walls that hesed attempts to break down.The need for solidarity, recognition, and appreciation (of gifts and talents) is shared by all members of community, not just the ablebodied. All are capable of contributing to hesed because all have the ability to love, which is at its core. People with disabilities do not simply receive love, but are equally responsible to love. They are not passive, but active members of an interdependent community, where all can give and all can receive. What we need to realize is that disabled individuals may contribute in different ways than those who do not have disabilities.

A person in a wheelchair may not be able to physically assist another, but he may have an abundance of knowledge that he uses to teach or advise someone who lacks such wisdom. On the other hand, a person who is not physically limited may literally lend a helping hand to people with disabilities. However, this individual certainly has needs of his own that can be satisfied by the intellectual, psychological, emotional or spiritual strength of another. In his discussion of acceptance, Jurgen Moltmann addresses this idea that each of us is disabled.

There is no differentiation between the healthy and those with disabilities. For every human life has its limitations, vulnerabilities, and weaknesses. We are born needy, and we die helpless. So in truth there is no such thing as life without disabilities. It is only the ideals of health of a society of the strong which condemn a part of humanity to being “disabled.” (110)

Rather than seeing society as two separate groups, the disabled and the nondisabled, we need to understand that we are all, in fact, one combined group. And disability is what we have in common.

This commonality leads us into the important discussion of supporting one another as members of the Body of Christ (1 Cor. 12:12-31). Each member has a different and unique role, and each contributes to the body using whatever gifts he or she has been given, whether that be physical, mental, or spiritual. However, one part is not more necessary or more important than the other, and if any part were missing, the body as a whole would not function as it should. Each part is dependent on the others. As Barbara Patterson notes, “Embracing our limits helps us discover the best ways of making our energies available to others who have different limits and of offering our need” (134). Recognition of our limitations and our abilities, and therefore our need for others and their need for us, results in a willingness to both give and receive as members of an interdependent community.

The problem is that reciprocity is often misunderstood. Rather than perceiving the contribution of disabled individuals as active, the church has adopted a flawed understanding of reciprocity. This false reciprocity suggests that the disabled contribute to the life of the community simply through being. Roy McCloughry and Wayne Morris illustrate this misconception:

When we accept the invitation to explore the images of God in each other, we find that even those who have to be cared for on a permanent basis can make an enormous contribution to our life as a community just by their presence. They affect the way we do our work, change our priorities as to what is important in life and remind us of the importance of relationship. (29)

Claiming that those with physical and mental limitations are only influential through their presence is very problematic. By allowing only passive involvement, we strip those with disabilities of active participation. Thus, they become objectified, viewed merely as inspirational. But those with disabilities are not mere metaphors. Nor should their presence do no more than foster compassion or generate appreciation for things otherwise taken for granted, as suggested by Joni Eareckson Tada and Gene Newman in their book, All God’s Children: Ministry with Disabled Persons (30). Those who have physical or mental limitations are not to be placed on pedestals, admired for overcoming obstacles. Who is to say that the challenges they encounter are more difficult than those the rest of us face? They are not survivors, but individuals who experience both the joys and the hardships of life, as we all do throughout the course of our own lives. Those who are physically or mentally different are equally capable of making an active contribution to the church, no more or less than any other.

When we view people with disabilities as metaphors to help us understand our own faith, we objectify them. The problem with objectification is not simply one in which people with disabilities are belittled and their abilities undermined. It is more complicated than that. Similar to the problems that surface from false reciprocity and a misinterpretation of hesed, objectifying people with disabilities and, consequently, limiting their contribution to the community, expands the distance between the disabled and nondisabled.

So how do we bridge this gap? Surely we can begin by raising awareness, heightening our understanding that a problem exists with the way most of us view those who are different. Mere understanding that the problem exists is not the end of the struggle. It is easier to recognize the need for change than to step outside our comfort zones and put those changes into practice. But our Lord Jesus Christ asks that we continue the process of restoration and reconciliation by dissolving all divisions among us, establishing a community united by the common goal of shalom. Only when the initial step of awareness has been taken can the first crystal fall into place, thus beginning a new transformation that may, by God’s grace, finally lead to a new and beautiful design among all God’s people.