Impairment and accessibility.
We all differ in many respects. Gender and ethnicity are two differences that have been contemplated through the history of humanity. They are discussed in the Bible and in the whole Christian tradition. The same thing can be said about differences in access to resources: we talk about the gap between rich and poor. We also refer to the difference between free persons and slaves, too often with the assumption that we have left it behind us now--even though the number of slaves in the world today is shockingly high.
The rationale of the entire ecumenical movement is based on differences among Christian confessions, churches, and denominations. How are we to understand the differences among Christians in this world? To what extent do these differences pose problems that we need to overcome and to what extent are they diversities that can be welcomed as varying expressions of the same faith in different contexts? But the ecumenical movement faces not only the challenge of diversity among the Christians themselves. The question of how we should live together with our neighbours that have another faith--or have no faith at all--is an urgent matter on the ecumenical agenda.
The question of plurality is connected to discrimination. The verb discriminate is an interesting word because it has different meanings in different contexts. To see differences, it is necessary to discriminate. But often this word has an oppressive meaning, implying that a person's dignity is neglected because they are different from some kind of norm. Discrimination is an important word in today's debates about society, and it has become an important signifier of other kinds of problems we need to deal with. Discrimination is often connected with injustice. To oppress a person is always wrong, but to do it on the basis of a factor that is irrelevant in a certain context, such as gender or skin colour, is wrong in a special way. It denies a person's dignity and their possibility of living a life in accordance with their capacities. It makes people powerless.
In this essay I am going to focus on the question of impairment and our different abilities and disabilities, considering how this question relates to our discussion of what it means to be a human being. What does it mean to be different because of impairment? And how does this relate to other kinds of human diversities, and to human diversity in general? I will challenge the ideas that the same kinds of mechanisms are behind different kinds of discrimination, and that the same kinds of problems are related to different kinds of oppressive discriminatory practices. While there are certainly connections that need to be identified, there are also important distinctions we need to acknowledge in order to deal with the problems of discrimination in a relevant way.
The God of life, who has given us our lives, has given us plurality with it. One of the fundamental things about being human in God's world is that we are able to relate to others who are different from us. Let us begin by acknowledging that identities are formed of similarities and dissimilarities. The very basis of acknowledging something's existence and identity is to differentiate it from something else. Babies acknowledge their own existence when they start to understand that there are things in this world other than themselves, and the question of who we are is always connected to the question of who the other is and how to deal with the other. Relating to others is a fundamental part of our being. Our faith in the triune God is a faith in which relation, not loneliness, is at the very heart of God's being. In the beginning there was not the lonely subject, but subjects in relation. God is love (1 John 4:16) and relationship is the foundation for love. Love implies a differentiation between the love and the loved. Of course, one can love oneself, but that implies a relationship to oneself.
It follows, then, that one of the very basic skills we need to have as human beings is to be able to relate to those who are different from us. To meet the other can be something thrilling and satisfying, but it can also be unpleasant, threatening, and even hostile. The other's existence poses a challenge to us, because their becoming a part of our own world has implications for our own identities. The other's way of being says something about my world and what it is to be a human being in that world. It says something about our possibilities as human beings. How big or small these challenges are depends on how close these possibilities come to our own identities. One reason for disliking another person is that we recognize something in them that we dislike in ourselves, that we would like to deny we have.
Our attitude toward plurality has to do with our concept of peace. Peace, God's shalom, has to do with relationship. To live in peace is to have good, peaceful relations with God, our fellow human beings, ourselves, and the whole of creation. To be a peace maker, one of those who will be called children of God, is to identify the things that prevent us from living peacefully with others, such as various kinds of discrimination and oppression. And we cannot have peace without justice.
What does justice mean and what has justice to do with equality and plurality? Equality is not the same thing as similarity. We are all different from each other and make different priorities in life. Justice is not that we all have the same things or the same opportunities. Justice is when our differences do not become oppressive structures that deny people the possibilities in life that allow them to reach their potentials as human beings. Justice and peace are descriptions of those moments of grace when we can simultaneously be who we are and be close to our fellow human beings.
In this respect, it is interesting to discuss what distinguishes impairment from many others factors that differentiate people. Anyone can acquire an impairment through an accident or sickness, and most people who reach old age will at some point in their lives experience impairment. Persons with impairment actualize the possibility of being disabled. Like it or not, to a person without an impairment, a person with an impairment is a reminder of that person's own vulnerability. This makes the question of impairment different from other differentiations, such as gender, ethnicity, or sexual orientation.
This has implications for how persons without impairment relate to persons with impairment. In my country, Sweden, parents expecting a child who are asked whether they want a boy or a girl often respond, "It does not matter, as long as the child is healthy." When I asked my mother to describe her thoughts on having me, a child with cerebral palsy, she said, "We, your father and I, expected that something unfortunate should happen, because we had been so lucky until then." This statement implies that fortunes and misfortunes are distributed in an equal way among persons, which hardly accords with our overall experience of being human beings. But is also implies that my impairment was the expected misfortune. Normally a child brings happiness to a family and is regarded as a blessing. But to have a child with an impairment is something tragic, a loss. It is the experience that life does not always develop the way we hope. I have to adjust to the understanding that my arrival in our family was connected with disappointment and sorrow. What does that say about my impairment, about my life, and about the lives of other persons with impairment?
I have no problem with the idea that people do not want to become the way I am. The spastic nature of cerebral palsy creates certain patterns of movements that sometimes can look a bit silly or funny, if you like. In fact, some Swedish comedians create amusing characters by imitating a spastic way of moving. People laugh at them out of a combination of amusement, shock, and a kind of relief that they are not spastic themselves. But how does this affect the way people relate to those of us who have cerebral palsy? Because it is nonsense to claim that it does not have an effect.
First of all let us acknowledge that the lives of those who live with impairment are general human experiences, not special experiences only relevant to persons with impairment and those who live around them for personal or professional reasons. The experience of impairment tells us something that is relevant to all our lives. One result of this fact is that many people regard themselves as experts on impairment. As a person with impairment, I am surprised how often I meet other people who tell me that they understand and know how I am, without even asking me. One person even told me what a privilege it was for me to meet her, because she understood my situation. I guess she told me this in case I did not have the wisdom to appreciate her understanding as she thought I should.
But the fact that meeting a person with impairment actualizes the possibility of impairment also triggers different kinds of defense mechanisms, with implications for how persons without impairments relate to those who have them. One example of this is an overly positive approach, where impairment seems to cause absolutely no problems at all. Handling another's unpleasant experience in this way, as charming or even exotic, is often a good defense against facing the fact that this experience is a possibility.
Historical examples abound of how people have tried to physically exclude people with impairment from their world. Travel agencies have faced complaints from guests--some even demanding their money back--who claim that the presence of people with impairments at their hotels have spoiled their holiday. Earlier in history, we find stories about what we can call "a magic of likenesses": the idea that a child is born with an impairment because its mother experienced something that reminded her of the impairment during her pregnancy. For instance, a child is born with epilepsy because its mother while pregnant witnessed the slaughtering and death throes of an animal; or a child is born with a harelip because the mother during her pregnancy was frightened by a hare. In order to avoid such tragic incidents in 18th-century Copenhagen, an institution was built to keep persons with impairments away from public life. This then is one way of keeping a distance between ourselves and persons with different sorts of impairments: to physically remove them from sight.
But as I mentioned above, there are more subtle strategies to accomplish this distancing. One is to victimize persons with impairment: to reduce them to victims of the misfortunes of their lives, the poor ones whom the rest of humanity only can pity. Persons with impairment are often described in the media as individuals who show the rest of humanity how tragic human lives can be. Such stories make persons with impairment into exotic figures, so tragic that the rest of humanity cannot, or at least do not have to, identify with them. Another way of exoticizing persons with impairment is to portray them as heroes, accomplishing remarkable achievements "in spite of" their impairments. We love such Cinderella stories, where people from underprivileged positions get their revenge and achieve hard-to-reach goals. The stream of books and films with this theme never seems to end, fulfilling our need to hear about the good and the sensible in this world and assuring us that we have reason to hope for the future.
A social political interpretation of impairments is to regard them as disabilities, with the implication of "disability" as a medical term (and, as such, as part of natural science) or a sociological term. We understand science as a more stable discourse, one that is removed from the messy conflicts handled by society and politics. It thus seems easier to understand disability as a part of a scientific discourse than part of a political discourse. But the life conditions of persons with disabilities differ from those with impairment. It is something quite different, for example, to have a visual impairment than to be hard of hearing or have mobility difficulties and be in need of a wheelchair. If we consider other disabilities, such as epilepsy, diabetes, or intellectual disabilities, the picture becomes even more diversified and complex. When it comes to capacities and incapacities, a person who is visually impaired has more in common with a person who has no impairments than with a person with a different impairment, such as a hearing impairment.
Still, we regard persons with impairments as persons with disabilities, and we develop programs that should deal with the concerns of persons with disabilities as if their concerns are so similar that they can be managed in the same context. This peculiar notion that persons with different kinds of impairment can be grouped together as persons with disabilities is a political idea, first made within a political discourse. Persons with disabilities are seen as those whose problems are due to different impairments that we can manage through various political measures.
The modern Western concept of disability has its roots in early modernity, in the Renaissance, when the first institutions for persons with disabilities in southern Europe emerged. During this time, a monetary economy was developing, along with the notions of working, receiving a salary, and earning money. At this time, society began to differentiate among the collective poor between those who were justly poor and those who were wrongly poor. The latter were those who were seen as able to earn their own living: their poverty was not the responsibility of the wider society. But the justly poor were those who were poor because of impairment or disability--thus they were not responsible for their poverty. Their poverty was a problem that society had to deal with. One action taken was to give them passes as beggars, legitimizing their right to beg.
The discourse on disability has always been a part of the discourse on poverty. If I ask you to think of persons with disabilities in history, likely you imagine a never-ending queue of beggars, persons with ragged clothes on crutches and canes. You do not think of the elite of society, of emperors or royalty, even though many of these did have an impairment. Roughly ten percent of the population experience impairment, and this is also true among the privileged in society. But as we are so used to seeing disability as a part of a discourse on poverty, we have a tendency to think of poor people when we think about persons with disabilities.
The disability discourse is thus a distinctively modern discourse and part of the modern way of seeing a person as a project, as something that we can change. When we identify something as a disability, we have a tendency to understand this as a problem to be solved. We have a battery of actions and programs to solve the problems that come with disability, and we have many professionals in this business: physiotherapists, occupational therapists, speech therapists, social workers, etc. They are all in the field of solving the problems that come with disability, at least as far as possible.
In my country, Sweden, the goal of these actions was, for a long time, identified as "normalization." The goal of societal efforts in this field was that persons with disabilities should be as "normal" as possible. We even have legislative texts that state that persons with disabilities should have the right to live as everybody else--a fascinating and peculiar statement, as people without disabilities certainly do not all live in the same way, with the same standards and in the same living conditions. Whose lives are we comparing theirs with: upper, middle, or lower class? Of course the phrase "to live as anyone else" says everything and thus nothing at all. It covers the conflict that lies within every political subject: How much of its resources is society going to spend on people with disabilities? What standard of living is good enough for persons with disabilities?
And so politicians have to make decisions about allocating limited public resources towards actions for people with disabilities. What are the comparable standards? Which standards are reasonable, which too low, and which ones exceed what is justifiable. As a person with impairment, I have come to accept that certain possibilities in life that are open to others are not open to us. In Sweden, for example, a popular holiday destination is to hike through the northern wilderness around the Snow Mountains. The paths there are not accessible for wheelchair users, and how could they be? The area's charm is that it is a wilderness, unaltered by humans, so no one expects that a person using a wheelchair can take that kind of holiday. Normalization was never meant to go that far.
But how far should it go? If it is acceptable that the Snowy Mountains are not wheelchair accessible, is it acceptable that certain public localities aren't either, such as restaurants, shops, theatres, or churches? In my hometown of Stockholm a couple of years ago, one church decided against making its building accessible to wheelchairs, reasoning that there are plenty of other churches in Stockholm that are accessible. Wheelchair users can still go to church; they just cannot visit that particular church. Many would similarly argue that certain establishments, such as shops in old buildings, cannot be expected to become wheelchair friendly. But if persons in wheelchairs need to accept certain limitations, which ones should they accept and when do they have the right to feel oppressed?
In Sweden there is debate over whether inaccessibility should be regarded as discrimination. Some argue that certain limitations need to be accepted, that the whole world can't be altered so that persons with disabilities can get everywhere. From this viewpoint, certain spaces, such as historic buildings, simply are not accessible. These arguments can be connected to the strategies that I discuss above, about keeping a distance between oneself and persons with impairments. It would be an absurd discrimination to say that certain public buildings are not open to persons with a certain eye or skin colour--but this does not apply to persons with certain impairments. This is regarded as something else. Why?
In Sweden, some people with disabilities tell us that lack of accessibility is not discrimination. One wheelchair user says that he doesn't care about high curbs: he simply does not look at them. This is a very popular message: that the problem of inaccessibility can be solved by the decision not to interpret them as a problem. This man decides that he does not need to go the places that are inaccessible and thus releases others from the burden of feeling guilty for his lack of access. Other people look at him with gratitude. Whereas they look at me, a person who believes that inaccessibility is discrimination, as a difficult person. The former approach to the situation is much easier to cope with. But I ask, is that a fair solution? When we ask our God of life to lead us to justice and peace, is that the way forward?
In his classical book Stigma, sociologist Erving Goffman describes an attitude he calls "the good adjustment": this is the attitude that unstigmatized persons want the stigmatized to have towards their own situation. Goffman writes:
The good-adjustment line ... means that the unfairness and pain of having to carry a stigma will never be presented to [normals]; it means that normals will not have to admit to themselves how limited their tactfulness and tolerance is; and it means that normals can remain relatively uncontaminated by intimate contact with the stigmatized, [remain] relatively unthreatened in their [own] identity beliefs.
What Goffman says is important for every group that is stigmatized, but its importance rises when it comes to persons with impairments due to the fact, which I pointed above, that anybody can acquire impairment. This particular fact can be quite disturbing, and some people will want to defend themselves from it.
One way of doing this is to use persons with impairments as "psychological dust bins." This means to project the possibilities that we do not want to see in ourselves onto other persons. But if this strategy is going to work, the screens onto which those possibilities are to be projected need to step forward, receive the projection, and then humbly retreat. Their presence cannot be too obvious. If they don't retreat, the presence of the projected possibilities will be intensified, and that will mean that instead of being relieved of fear, the fear will become even more obvious. So the presence of persons with impairment needs to be modified. This is why people without impairment would prefer that persons with impairment undertake Goffman's "good adjustment," and they give credit to those who do so. They are also prepared to let those with impairment who don't exude "good adjustment"--persons like me--know how awkward we are.
Is this why we still do not have policies that are fully adequate for persons with disabilities in many Western countries? In spite of the fact that the Swedish political establishment has, for decades, had clear documents of the needs of persons with disabilities, the political actions to meet those needs are largely absent. Indeed, currently many persons with disabilities are experiencing cutbacks in the support they receive from the authorities.
I believe that interpretations of living conditions that overemphasize the differences between fives with and fives without impairments do not help either persons with or persons without impairments. Those alternatives seem, from some aspects, attractive. But they can also hit back against efforts to give persons with impairments possibilities equal to those of persons without impairments. Why is it evident that persons with impairments should have the same standards of living as persons without impairments if they are so different from them? I also believe that persons without impairment are not helped by making persons with impairment, into the "exotic other," someone with whom they cannot identify. Even though identification with persons with impairment can be a reminder of the painful possibilities that come with every human life, we are not helped by denying the vulnerability that we all live with. It is rather when we acknowledge that we are vulnerable beings that we can reach a realistic view of life that can be liberating.
We can acquire a feeling of peace by refusing to recognize ourselves and our own vulnerability in our fellow human beings. But this is not the true peace, the peace that the Lord, Jesus Christ, gives to us, his disciples (John 14:27). The peace of God is the realistic peace, the peace that comes from seeing every aspect of love and recognizing God's love as a transforming factor in the whole world. This is what Christian faith is all about: to be able to interpret our own lives and the life of the whole world in the presence of the loving and triune God. That love transforms our world not by denying our vulnerability, but by recognizing that loves transcends our weaknesses and vulnerabilities.
Christian theology gives us many resources to help us interpret our life and all that comes with it. Christian faith is about a God who acts in creation and salvation not in spite of but through vulnerability. Again we return to the most important metaphor for God in the Bible: God as love. I believe that love is always connected to vulnerability, because someone who loves is always vulnerable. Love can never be commanded. A loving person never commands the loved one to give love in return. Love is always a gift and the one who loves always risks being disappointed. I would say that vulnerability is thus the flip side of the coin of love.
In St Paul's First Epistle to the Corinthians he writes about the members of the body that seem to be weaker (1 Cor. 12:22). It is interesting that he writes about those who seem to be weaker, not the those who are weaker, because those things that seem to be weak are not always weak in reality. Instead, in the Bible we read about a very subtle dialectic between strength and weakness. This dialectic is hard to write about in a way that is not oppressive. It can be oppressive to say that certain people--for instance, persons with impairment--are weak. Still we cannot deny that impairment sometimes leads to weaknesses. But these weaknesses can turn to strength through admitting that the strength we need is not always our own strength but the strength we have in relation to our fellow human beings. The strength the Bible teaches us is not a strength that comes from a single subject, but from the relationships among many subjects who are interdependent. The subject who is strong in the biblical sense of the word is not the subject who says "I," but the one who says "we." The biblical strength is the strength in love, and love is always found in relationships.
So even though strategies that help us to deny our weaknesses and vulnerabilities seem attractive, they may in the end make us lose contact with the genuinely liberating strength that comes from the deepest truths about ourselves and our lives: that the main things are not our own achievements, that we are loved by the triune God, and that our lives are gifts from that God. In God's love we dare to meet our weaknesses and vulnerabilities. This is not a sentimental statement that hides the sad facts about impairment or neglects the sorrow that can come with it. Impairment and disability are in part about losing possibilities. But our liberation is not through strategies that conceal reality, but through being able to see that the deepest truth about us is that we are loved by God--and that this truth will make us free (John 8:32).
So the question arises: How helpful are the categories persons with impairment and persons with disability? Human beings tend to categorize things they meet in their lives. It is how human understanding operates, and there is nothing morally wrong with it. But we must understand that these are interpretations, and like every interpretation they help us to understand only parts of our world. Other sides of reality can be concealed by the same interpretation. Interpretations, then, are ambiguous. But in the midst of our life, with all its ambiguities, there is God's love: that grace that embraces every ambiguity and lets us become children of God. In God's love we can be both strong and weak, we can take actions and responsibilities, but we can also let such things go when we do not have the strength to do otherwise. We are held by a network of loving relations, the network that is God's love, which creates, upholds, and saves this world.
One of God's gifts to humanity is empathy. It is by recognizing ourselves in our fellow human beings that we can learn more about the reality that is ours. When we reduce other human beings to something less, to a sentimental cliche or just a need, we reduce the life world we are all sharing. So by reducing our fellow human beings to the "exotic other," we are also reducing the psychological space in which we all live. We deny ourselves a deeper understanding of what it is to be a human being in God's world if we do not understand that we are all interconnected. Discrimination towards some people is discrimination against us all. It is through this kind of identification that our ethical reflections can help to liberate us all.
Our God is the God of life, the God of realism that knows and is sensitive to all aspects of life in our world. Through God's transforming love, we can receive peace and justice as gifts from God. Peace and justice are not things we can make on our own. They are not products of human achievement. But we are called to be witnesses to God's works in our world. To believe that peace and justice are our future is not romantic, sentimental, or wishful thinking, but our hope, because the God that gives us life is the God of love and it is through God's love that we will be saved. Every oppression and discrimination is a denial of God's loving presence in our world. Every injustice is a threat to us all. If one member of the body, Christ's body, suffers, all suffer together with it (1 Cor. 12:26). When we speak up against discrimination, when we take actions against oppression, we are ambassadors of Christ.
In Christ, God became accessible to the whole creation. Accessibility is a part of God's peace. In Christ, God prepared a place for us (John 14:2). To me, that is a good definition of love. Love makes us prepare places for those we love. In love, there is a room of peace and justice. The theme of the forthcoming tenth assembly of the World Council of Churches is a prayer, a prayer that God will lead us into the room that is God's love, a room of love where there is a space for all of us. That prayer is also a recognition that God is calling Christ's church to be inclusive, to tear down every wall of injustice, inaccessibility, and oppression. The churches need to look at their own communities and practices to see where there is lack of accessibility in the church's own work. To be a testimony to the love of the God who became accessible in Christ is to work against inaccessibility in all its forms and to provide space for every human being, because each of us is created in the likeness of God and no one can be excluded if the churches are going to reflect the love of God. We need to identify oppressive structures inside and outside the churches, tear them down, and show alternative ways of living--ways that are accessible for all human lives.
DOI: 10.1111/erev. 12006
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|Publication:||The Ecumenical Review|
|Date:||Dec 1, 2012|
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