HELL-BENT ON HELPING: Benevolence, Friendship, and the Politics of Help

By: Emma Van der Klift & Norman Kunc

 
Originally published in: Thousand, J., Villa, R., Nevin, A. Creativity and Collaborative Learning: A Practical Guide to Empowering Students and Teachers. Baltimore: Paul Brookes, 1994. 
© Copyright 1994 Paul H. Brookes Publishers.

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The move toward cooperative and inclusive education is part of a larger move out of social oppression for individuals with disabilities. It is part of a groundswell movement of social reform that holds as a central tenet the belief that all children, including those with disabilities, are capable of learning and contributing to their classrooms and communities.

Students formerly educated in separate schools or segregated classrooms are appearing in increasing numbers in neighbourhood schools and regular classrooms. Across North America, we are coming to recognize that full participation in communities and schools should be the right of all individuals and that segregation on the basis of physical, mental, or cultural differences is fundamentally wrong.

This is the first generation of children with and without disabilities to grow up and be educated together. Consequently, within inclusive education we have come to entertain a cheerful optimism that the generation growing up now will be different than those of the past. We are hopeful that greater contact between children will begin to break down the barriers of misunderstanding and dispel the myths that have created society's response to disability.

At first glance, this change might seem to be taking place. Individuals with disabilities are more visible and increasingly involved in community life. If we believed that greater proximity led to greater acceptance, it could be argued that we are successfully participating in the creation of a new social order. Unfortunately, this is only partly true. Instead, we are finding that increased visibility and "presence" alone do not necessarily ensure that those with disabilities are fully included.

True inclusion is dependent on the development of meaningful and reciprocal relationships between children. As classrooms become increasingly diverse, new strategies are being developed to ensure that the new students are more than simply present. Friendship circles, school clubs and special buddy systems have been implemented as formalized attempts to foster interaction and develop relationships.

While increased interaction may result from such efforts, friendship often remains elusive. Children may have successful buddy systems during school hours and still be isolated and friendless after three o'clock. Children without disabilities may be helpful and involved, but a reciprocal relationship upon which genuine friendship is based does not always develop. The difficult and often frustrating question is then, "What are the barriers impeding the development of friendship, and how can we move past them?"

FRIENDSHIP AND HELP

At the end of the twentieth century, the most significant barriers preventing individuals with labels of disability from fully participating in schools and communities are still attitudinal. Specifically, our society still perceives those with disabilities as perpetual receivers of help. Descriptors like "less fortunate" and "needy," telethons, and tear-jerker journalism all continue to perpetuate this view.

Unfortunately, there is still a distressing tendency in some schools to base interactions with students on these broader societal misperceptions, despite a sincere desire to end the isolation experienced by so many children with disabilities. Friendship clubs and buddy systems based on stereotypical beliefs risk perpetuating prejudices and myths and even exacerbating the problem.

Obviously, it is essential that students be provided with opportunities to interact. Formalized friendship and support circles may be effective ways to building relationships. However, an over-emphasis on the "helper/helpee" relationship can easily skew the delicate balance of giving and receiving that is the precursor of true friendship. It is critical, then, to regularly and carefully examine the nature of the interaction we facilitate and the attitudes that inform it.

Consider the following scenario:

Four third grade children from a local elementary school have come to speak to a room full of adults. They've been invited, with their teacher, to talk about friendship. Actually, three of them are there to talk about their friendship with the fourth child. Children in third grade make friends all the time. We ask ourselves, "What could possibly be unusual enough about this situation to bring these children here today?"

What's unusual is soon apparent. Three of the four children in the room can speak, one of them can't. Three of the four children in the room can walk, one of them can't. The three walking, talking children are here to tell us about their relationship with the young man in the wheelchair.

Adults in the room begin to smile as the first classmate talks. Approving nods accompany the child's words, "He's different on the outside, but inside he's just like me."

The conversation whirls around the boy in the wheelchair as he scans the room, looks at his communication board and sometimes watches his classmates.

"We take turns being his buddy," offers one young girl. "Everyone has a turn."

As the children talk and answer questions, it is interesting to watch the interplay between the subject of the discussion and the girl to his left. She has one arm around his shoulders, and in the other hand holds a washcloth. She wipes his mouth repeatedly. At one point, he appears to lose patience and struggles a bit. One hand jerks forward. His friend seizes his and holds it still. He makes a noise of clear irritation, and attempts to pull his hand free.

His classmate smiles fondly at him, continuing to restrain his hand, and wipes his mouth again."

Is there anything wrong here? Not much, we might say. A nine-year old who in other times or other places might have been attending segregated classes and a group of nice third-graders together are learning a few lessons about difference and similarity.

We might even agree with comments made by audience members. We heard the boy's three classmates being called "the hope for tomorrow" and "exceptional kids". All over the room, adults were beaming. After all, this relatively new phenomenon seems to hold out some hope for an end to discrimination and distance between those who have disabilities and those who do not.

However, as the presentation continued, it became increasingly apparent that while both adults and children thought they were talking about friendship, much of the discussion taking place was really about help. While there was undeniable warmth between the children, most of the comments and non-verbal interactions reflected a "helper/helpee" relationship, not a reciprocal friendship.

When initially attempting to foster relationships between children with disabilities and their non-disabled classmates, it is common practice to have children "help" the new student. Such help may take the form of physical care, "keeping company" during breaks, or schoolwork assistance. Help giving contact can reduce an initial sense of strangeness or fear, and can, if carefully done, lay the groundwork for friendship.

Clearly, there is nothing wrong with help; friends often help each other. However, it is essential to acknowledge that help is not and can never be the basis of friendship. We must be careful not to over-emphasize the "helper/helpee" aspect of a relationship. Unless help is reciprocal, the inherent inequity between 'helper' and 'helpee' will contaminate the authenticity of a relationship.

Friendship is not the same as help. Attempts to include children with disabilities have sometimes blurred this distinction. Friendship clubs are often really assistance clubs. For example, how much time is spent on the logistics of help? "Who can take Jane to the library on Monday?" "Who can help George eat lunch on Friday?" Still more insidious, how much time is spent bringing George's classmates into a "mufti-disciplinary team system" to analyze the effectiveness of his current behaviour management plan?

Professional caretakers are made, not born. How does it happen? Put a third-grade "helper" next to a third grade "helpee". Add a sizable amount of adult approval, and there you have it.

It is not entirely thrilling that kids who take part in friendship circles during school go on to careers in human service. Don't misunderstand. Lots of wonderful people choose this profession. However, an unfortunate result is that lots of children and adults with mental and physical handicaps have legions of professional caregivers, but no friends in their lives. We must guard against merely creating another generation of "professionals" and "clients", with the former group seen as perpetually competent, and the latter, perpetually needy.

But what's a teacher to do? To create a helper is relatively easy; to facilitate a friendship is tough. After all, friendship cannot simply be mandated. At best, it seems to be made up of one third proximity and two thirds alchemy!

Perhaps we must begin by acknowledging what should be, but is not always obvious. That is, no one has the power to conjur up friendship at will. Maybe that's just as well. Friendship is about choice and chemistry, and cannot even be readily defined, much less forced. This is precisely its magic. Realizing this, we can acknowledge without any sense of inadequacy that we are not, nor need to be, friendship sorcerers.

However, teachers and others do have some influence over the nature of proximity. Thus, to create and foster an environment in which it is possible for friendship to emerge might be a more reasonable goal. In order to achieve this goal, it is essential that we examine the nature of the interactions we facilitate. In particular, we must look closely at the role of help in our classrooms, and look not so much at whether children should help each other, but how that help takes place.

THE POLITICS OF HELP

Let's "begin at the beginning", and examine what help means to all of us. In most societies today, helping others is viewed as a socially admirable course of action. Those of us who are in a so-called "privileged position" are asked to give to others. We know we should give to our families, our communities, and most of all, to those "less fortunate" than ourselves. Yet, why is it that most of us, while perfectly comfortable offering help, are decidedly uncomfortable receiving it?

The answer to this question is at once relatively simple and enormously complex. Consider the contrasting perceptions regarding the giving and receiving of help as presented in Table 1. As Table 1 illustrates, although our society associates a host of positive attributes to help, these attributes clearly are reserved for the "helper."

TABLE 1: CONTRAST BETWEEN OFFERING HELP AND RECEIVING HELP 
 

When people without disabilities are asked to imagine their lives with a disability, their reactions reveal interesting assumptions about disabilities and the Meaning of "quality of life." "I'd lose my autonomy," says one man; "I'd be so helpless," says another. "I'd be vulnerable, and I wouldn't be able to do things for myself!" These are typical responses. In fact, a close look at the controversial right to die issue reveals a disturbingly clear extrapolation of these sentiments; in today's society, many of us would rather die than lose our independence.

Those of us who still are able-bodied and young seldom think about these issues, having the luxury of viewing help as something that is ours to offer or withhold at will. Unless we happen to break a bone or become incapacitated with some temporary illness, we usually don't think about how it feels to be the receiver of help. However, as age and the possible prospect of infirmity approach, it is not uncommon for the always-uncertain future to be viewed with apprehension if not dread.

Is it the need for help itself that causes us to feel this way, or is it the kind of help we expect to get? Those who have closely examined this issue believe that the problem lies primarily with the lack of self-determination commonly experienced by "helpees". It seems that often dignity must be forfeited in order to receive help. The power to decide where and when help should take place, who should help us, and whether in fact help is needed is stripped away.

People with disabilities sometimes do need help. However, if they are uncomfortable receiving it, as most of us are, they are left in a classic "no win" position of either doing without help or enduring the underlying demeaning messages. Furthermore, it is almost impossible to confront the issue directly. If the helper's motives are questioned, the inevitable response is an indignant or sorrowful "I was only trying to help." Consequently, for many people with disabilities, help is a "four-letter word."

In inclusive and co-operative education, we are working toward a time when asking for and receiving help is not considered an admission of inferiority, when being the helper does not imply moral or social superiority. The goal is a future in which the human community learns to merge help with respect. However, in the interim, it is important to acknowledge that the broader societal perception of help does not yet match this ideal, especially as it relates to individuals with disabilities.

RESPONSES TO DIVERSITY -- FROM MARGINALIZATION TO VALUING

Conformity and uniformity are highly valued in today's society. In general, we are uncomfortable with those who are different. However, rather than admit this, our discomfort is often masked by rationalization. We cover our fears by asserting that our actions toward those with disabilities are for their own good. "It's a dangerous world," we say. "Those who are different must be protected from the potential evils of the world". Then, without any apparent sense of contradiction, we go on to say, "Differences are potentially dangerous. We must protect society from those who are different."

Isolation in the name of safety is a double-lock on the door of community. It effectively prevents those relegated to the outer circle from entering and belonging, while still allowing those within to feel that lofty moral imperatives have been well served. We know that good intentions based on unacknowledged fears can result in oppression. Some of the cruelest actions committed by humanity upon its members have been the result of so-called "good intentions."

The act of forcible segregation for those seen as different is not reserved for those with disabilities alone. Throughout history, the dominant cultures have avoided, marginalized and even aggressed against so-called minority groups. For those with disabilities, avoidance and marginalization usually occur under the auspices of "protection". The result, however, is still systematic removal from regular society. Institutionalization and segregation in special schools and work environments have been the means of enforcement.

In the past two decades, more attention has been paid to the injustices and inherent problems created by segregation. As a society, we are beginning to examine some of the underlying motives, and are finding that our actions lack justification. But even as some of the more blatant forms of marginalization and discrimination are changed or eliminated, other hurdles are raised for those labeled different.

We have gone on to say, "You can be with us but you must first be like us." In other words, if you can reform and reduce the evidence of your disability, look and behave "normally", then you can come back into society.

Many remedial, therapy and life-skill programs have been expressly designed to help minimize the evidence of disability and to create an impression of greater "normalcy." The intent is to improve quality of life through increased "functioning" and skill development. The carrot held up is the promise of future belonging and acceptance. The real message is, "You are not valuable as you are."

Those who work on social justice issues are stripping the mask of good intention from the faces of both marginalization and reform. The hurtful results are made more public; their legitimacy and continued existence now in question.

There is, however, another response toward those who are different. At first glance, it is more appealing, and is consequently more difficult to recognize as oppressive. In our society, we believe that dealing well with diversity will require tolerance. In fact, we are regularly exhorted to become more tolerant toward others. Many view intolerance as morally reprehensible and wish and work for a truly tolerant society. The intent -- to create more acceptance of diversity -- can hardly be questioned. Tolerance has seemed, for many, a worthy goal. However, if it is the ultimate and only goal, true social justice will never be realized.

If we comply with the demands made by those with disabilities "because we have to", if our response is merely lukewarm resignation, or even benign patronage, we will not create a society in which equity and respect will be afforded to all its members. Simply being tolerated is not necessarily to be valued. Being present does not automatically mean being included. Having an endless parade of well-intentioned helpers is not the same as having a group of friends who value and respect you.

In sum, to move beyond mere tolerance, another response to diversity -- that of valuing -- must prevail. In a valuing paradigm, diversity is viewed as normal, people are considered of equal worth, relationships are of mutual benefit, and belonging is a central societal theme.

TABLE 2: RESPONSES TO DIVERSITY 

We live in a society that tells us there is only one "right" way to be. At times all of us feel measured against an unfairly strict standard: white, able bodied, young, intelligent, successful, attractive, thin and preferably male. Normalcy is a tight bell-curve, allowing little deviance without societal repercussion. Even those of us who find ourselves encompassed well within the confines of the curve feel pressure to conform to the middle, while those who fall outside its range feel that they are seen not only as deviant, but deficient.

It is puzzling that this standard of normalcy includes so few of us. We know that diversity, not uniformity, is the real societal norm. After all, the human community consists of great variety; race, gender, language, colour, religion, ability and sexual orientation. People of colour make up most of the world's population. Women comprise fifty one percent of the global population. Most of the world does not live in a state of affluence.

There have always been people with disabilities in society. Social justice for individuals who carry labels of disability will only come about as we learn to value diversity and recognize the multiplicity of gifts within the human community. Our strength is our diversity. We need a paradigm shift of the most profound kind, and, clearly, this paradigm shift will require a change in attitude.

However, the problems inherent in the creation of attitudinal change continue to be difficult for the agents of any social movement. Attitudinal barriers stubbornly defy legislation, do not respond to architectural adaptations, and do not necessarily improve with the application of more money or better programming. They are notoriously slippery; the insidious products of unconscious socialization.

To further complicate things, as any good social reformer with a modicum of honesty will admit, attitudinal barriers don't exist only among "those retrogressive oppressors out there," but are just as often within ourselves. In the immortal words of Pogo, "We have met the enemy, and he is us."

Inclusive education has begun to push society beyond blatant forms of oppression like marginalization and reform. On a daily basis we are confronted by our prior assumptions, called upon to question them, and asked to move toward a new awareness that differences do not imply deficiency, that people with disabilities are capable of significant contributions.

Genuine valuing of diversity will require further confrontation with the more subtle forms of discrimination (e.g. tolerance) and the courage to examine our own beliefs and practices as part of the process.

FROM TOLERANCE TO VALUING

How then, do we move beyond mere tolerance to true valuing of diversity? For many of us, the struggle is often not in understanding why we should do something, but in knowing what we should do next.

Rather than seek answers, perhaps it might be more helpful to begin by developing a new set of questions. We need questions that are broad in scope, and will challenge the paradigms both inside and outside the context of inclusive education. What kind of educational system do we want? What can schools become? What kind of society do we want to live in?

Schools will be transformed only as we move away from a blindered "that's the way we've always done it" mind set, and begin to focus on creating a classroom community that promotes belonging and acceptance for all, and does not rely on competition and stratification to provide its embers with a sense of worth. We know that cooperative learning strategies are one way to accomplish this goal. A further task for teachers in inclusive classrooms is to create the space in which relationships can develop by consciously thinking about and working on the nature of proximity. The following are some practical ideas to assist the process.

Don't Make Friendship a Big Deal

Friendship between children is wonderful. However, it is not a big deal. If we commend and praise children without disabilities for their interactions with their peers with disabilities (either publicly or in other ways), we inadvertently make friendship a big deal and imply that all children are not created equal. We reinforce the idea that it is morally and socially admirable to "help the handicapped," and, thereby may remove the opportunity for equality and reciprocity.

Respect Personal Boundaries

Adults are seldom comfortable talking about childhood sexuality. But the truth is, children start noticing each other in kindergarten. People with disabilities, however, often receive messages that tell them they are asexual, and these messages begin early. Boundaries of touch that would not be crossed between kids without disabilities should never be crossed with their classmates with disabilities.

An unfortunate side-effect of tolerant or benevolent interaction is a tendency to treat the "different" child like a life-sized doll or pet, or a classroom mascot with whom the usual physical boundaries of touch may be violated. We must always ask, "Do the interactions between children in any way compromise the dignity of the individual with the disability?"

Modeling Behaviour

There is a lot of discussion of how kids model behaviour from each other and how a child's peers are effective arbiters of social appropriateness. While this is most certainly true, we must also remember that teachers remain the most powerful modeling agents in the classroom. If interactions between the teacher and the child with the disability are respectful, the other students will take their cues accordingly.

A child's classmates may provide useful information about the nature of puzzling behaviours. Sometimes children will see things that remain invisible to adult observers. However, the risk involved in eliciting input about behaviour may be the development of an increased sense of difference and distance. People with disabilities tell us that it is easier to be ignored than to be patronized or seen as a "class project."

We can still get the information we need without compromising the equity of peer relationships by positing the issue as the school's problem, rather than the child's problem. This way, it is we who do not yet have the insight, experience or information necessary to support the student, not the student who is in need of "fixing". It may emerge that the real issue, one well worth discussing, has more to do with how we might make schools more responsive to all its members.

Reciprocity and Contribution

Although a majority of educators acknowledge that the rights of students with disabilities should be respected, there is an ongoing debate about whether reciprocity is really possible, and what kind of contribution is realistic to expect. "What," we're often asked, "can a student with a disability really bring to a relationship?"

This question usually reveals more about our own stereotypical views about the idea of disability than about the limitations of a disability itself. After all, there is nothing universally "true" about any disability. Generalizations about "the disabled" will never generate the information necessary to address serious questions about the nature of reciprocity or contribution.

Dembo, Leviton and Wright (1975), first identified a a societal tendency to generalize and make broad inferences about the nature of disability. They called this common phenomenon "disability spread." Specifically, "disability spread" is what happens when we extrapolate the characteristics we associate with the notion of disability to the particular individuals we meet. These perceptions are often based on stereotypes, and what we think we know about a particular disability. They are expressed in predictable ways. For example; "All people with Down Syndrome are happy." "People with cerebral palsy usually have a mental handicap." In fact, these characteristics may or may not actually be true of any individual. The figure below illustrates this concept.

FIGURE 1: DISABILITY SPREAD

Many inferences and assumptions are made about disability in our society. For example, we are inclined to see people with disabilities as a collection of needs and deficiencies (McKnight, 1977). We are led to evaluate people based on what is missing rather than what is present. When our perceptions are based on stereotypical myths and misperceptions we will not see a real person with any clarity.

In fact, every individual is a complex collection of components. Each of us have a variety of interests, skills, capacities, and a unique background. We all have different physical characteristics, and our own idiosyncratic personalities. In our interactions with others, we want most to be understood and seen for who we are, and hope that we will not simply be judged at face value. However, for individuals who have visible disabilities, being judged at face value is precisely what happens most often. When disability is seen as the largest component of a person, much of what is unique and "human" about her or him will be obscured. When needs and deficits are what we see, we only see what that person cannot do.

We will not recognize the diverse contributions of those who wear obscuring labels until we move our focus from the disability and look for the complexity and individuality we take for granted in ourselves. Only getting to know a person in all their multi-faceted individuality can cause the "huge" disability to magically shrink and assume its real proportion -- only one small facet of who a person is. Only then will we find ourselves able to see and receive the variety and richness of possible gifts.

Merging Respect and Help

Too much help can be a disabling force. One of the biggest challenges teachers face in inclusive classrooms is getting other kids to stop doing everything for the child with a disability. Too much help, even when enthusiastically given, is fundamentally disempowering. Help should always be "natural and situation-rooted" (Wright, 1983, pp. 311), and should only be what subjects of a fascinating study on help and disability termed "necessary help" (Ladieu, Hanfmann, & Dembo, 1947, in Wright, 1983, pp. 310)

Help outside the context of choice and self- determination is disrespectful. We all want to feel necessary. However, when our desire to feel needed is at the expense of someone else's sense of competence and autonomy, we commit a lasting act of injustice. People with disabilities literally spend lifetimes struggling to be heard. We must learn to listen. As Marsha Saxton (1985) wrote;

All of those people trying so hard to help me...All of them hoping for me to ... do well, all wanting to be kind and useful, all feeling how important helping me was. Yet never did anyone of them ask me what it was like for me. They never asked me what I wanted for myself. They never asked me if I wanted their help. ...I do not feel entirely grateful. I feel, instead, a remote anger stored beneath my coping pattern of complacent understanding. People do the best they can to help in meaningful ways, I know. I just wish all the disabled children would say to their helpers: "Before you do anything else, just listen to me." (pp. 133 - 134)

We must listen to both the verbal and non-verbal messages expressed by someone who may or may not want help. We must use this information to guide our actions and increase our sensitivity. It doesn't sound like much, but the ramifications are enormous. It is often during times that we are hell-bent on helping that we listen least well. We all know stories about people with visual impairments being forcibly "escorted" over crosswalks by well-meaning pedestrians, of people in nursing homes being fed when they are not hungry, of what the participants in the Dembo study aptly called "unexpected attacks" of help (Ladieu, Hanfmann, & Dembo, 1947, in Wright, 1983, pp. 309).

Empathy and Social Justice

Most children are acutely conscious of what is fair and what is not. It isn't usually difficult to appeal to a child's sense of justice. Furthermore, powerlessness and social stigma are not the sole experience of those with disabilities. Children, by virtue of their status in society, generally understand what it feels like to be without influence. They know how it feels to be silenced, to be disregarded, and to have decisions that concern them made arbitrarily and regularly by others.

We have downplayed and under-utilized these experiences, thinking that "white, middle class, able bodied children" don't experience oppression and won't understand. In fact, most children experience rejection, isolation and a sense of powerlessness at some time. Whether these are children of colour, children who must learn English as a second language, whether they are the children who dress differently, eat different foods or have ethnically "different" last names, or children who just don't seem to fit somehow, there is a kernel of commonality in these experiences.

Too often, in discussions of social justice between educators and children, the issues are portrayed as "theirs". We show kids what institutional life looks like, we talk about the negative effects of segregation, we ask them to think about how it feels to be teased because you have a disability. We even subject them to simulated situations, or "role plays", that supposedly allow participants to feel, for example, "what it's like to be blind". Unfortunately, the unintentional result is more distance, and a greater sense of fundamental "otherness". At best, this approach fosters sympathy, and at worst, a guilty relief, "thank heavens it's not me".

We must take care not to inadvertently reinforce the notion that those with disabilities are objects of pity. Equitable relationships cannot be built on a foundation of pity. Instead, we must build on the shared experiences, the shared stories between us to create a sense of empathy, a sense of "I know what you mean." This does not disregard our different experiences. It is certainly true that having a disability and being an immigrant are not completely comparable experiences. Likewise, being left out of games on the playground and being the victim of racist behaviour is not the same. However, where experiences do intersect, we have an opportunity to build connection and understanding that may extrapolate to other situations in unexpected ways.

Social justice is an important aspect of education. The development of empathy and shared understanding between individuals of diverse background and ability is critical if our world is to survive the next century. We need young women and men who will work together to address the issues of inequity and injustice that still face us.

You may wonder why, in a book primarily devoted to cooperative learning within heterogeneous schools, this epilogue has focused almost exclusively on inclusive education. We believe that individuals with mental and physical disabilities may well prove to be the proverbial canaries in the experimental coal mines of education. These are the people who will teach us most about the nature of help. Through our interactions with those who have disabilities, we stand to learn valuable lessons that will lead us to greater appreciation of diversity in all its forms. The creation of a better world is dependent on our collective ability to learn these lessons well.

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REFERENCES

Dembo, T., Leviton, G.L. & Wright, B. A. (1956). Adjustment to misfortune: A problem of social- psychological rehabilitation. Artificial Limbs. 3 (2). 4-62/ (Reprinted in Rehabil. Psychol. 1975, 22, 1-100.) in Wright, B.A. (1983). Physical Disability - A Psycho-social Approach. Second Edition. New York: Harper and Row.

Illich, I., Zola, I.K., McKnight, J., Caplan, J., Shaikan, H., (1977). Disabling Professions. London: Marion Boyers

Saxton, Marsha. (1985) "The Something That Happened Before I Was Born." Ordinary Moments -- The Disabled Experience. Syracuse: Human Policy Press.