Disability Studies - An Overview out of (intercultural) Theology

English

Disability Studies - An Overview out of an (intercultural) theological Perspective

by [email protected]

Contents

Introduction - From “I” and “They” to a mutual “We”. 1

Disability Studies - Research Areas. 2

Disability Studies - Hermeneutic Approaches in (Intercultural) Theology. 3

Theology of suffering versus differential and convalescence. 5

Ethical Consequences of the Diversity-Oriented Church. 6

Prenatal pastoral care - balancing the rights and obligations to unborn life - Imago Dei 6

Balancing - parental and mother's rights, unborn child rights 6

Practice of prenatal pastoral care. 7

Surrogate surrogacy - adoption and care. 7

Balancing parents' living environment. 8

Church inclusion - unity in diversity - challenges and benefits. 8

Bibliography. 9

 

Disability Studies - An overview from an (intercultural) theological perspective

 

Abstract

Theological models and approaches to disability studies have been widely available since the publications of Newbigin (UK; 1979), Eiesland (USA; 1994) and Bach (Germany; 2006). At the same time, approaches have developed in other disciplines, such as social research, anthropology, medicine or queer studies, and increasingly also in political science. At the bottom of the list is intercultural theology, which is only slowly approaching the topic and, from a postcolonial perspective, has to deal with the history of Christian diaconia (social service) in the transcultural encounter. There are also no hermeneutic proposals for the inclusive-oriented church out of the view of “unity in diversity” and diversity as a reflection of the Kingdom of God.

 

1)      Introduction - From “I” and “They” to a mutual “We”

Inclusion, integration and participation of all social groups in public opinion form the basis of a democratic and diversity-oriented society. However, people with mental and physical challenges need help from those without restrictions. In return, they enrich and complement research on social diversity with their own biographical experiences. The lifeworlds of researchers with mental and physical challenges offer science in all areas of life a perspective that represents the full humanistic representation. The previous renunciation of the perspective of people with mental and physical challenges in science, which can be described as paternalistic, is outdated. The “I” and “They” should give way to a “We”, which is ready to look at the research projects from an overall perspective. At this point, “normalcy” shifts towards people, who are part of society and who, in their “being different”, enrich society and challenge inclusion or social support. The mutual give and take in these processes asks for extra effort and does not fall to the person inclined to comfort. This also applies to people with mental and physical limitations, who should not rest on their marginalization but proactively, according to their needs, have to demand the support of society and take part in it with their gifts.

It is only when “we” are together that there is mutual giving and taking at eye level. Scientific research in theology and missiology must also face this inclusive approach, if it does not want to remain one-sided and paternalistic, but dynamic and socially relevant.

Disability Studies enable researchers with and without restrictions to discuss missiological-theological issues together and to view biblical content from different perspectives. The debate about building bridges between researchers with and without physical or mental limitations should therefore be superfluous because, although the realities of life in the two groups are different, cooperation is mutually beneficial. Science is only then holistically oriented when both groups exchange, seek to understand and complement each other. In practice, this also means meeting the support needs of researchers with physical or mental challenges. An elevator, a ramp or psychological support does not result on its own, so efforts by non-disabled people are necessary. In return, these researchers learn about research-related content regarding the realities of life of people with physical or mental challenges that give a picture of society as a whole. “Not about us, without us” is the slogan of the inclusive liberation movement shaped by groups of people with physical or mental challenges.

The following overview provides information on the current range of research in the field of Disability Studies from a theological perspective.

2)      Disability Studies - Research

Disability Studies is an umbrella term for all research on disability as a socio-cultural phenomenon. Medical, diaconal-nursing, technological, rehabilitative, sociological, theological-religious, anthropological-ethnographic aspects play a role from a historical and present perspective. Specific specialist areas have crystallized out of this multitude of options, but are being expanded daily with new research areas. In order not to lose track we restrict ourselves to those areas which are significant for intercultural theological and missiological perspective:

·      Disability Anthropology represents the ethnographic-biographical worlds of physically and mentally challenged people (e.g. Gelya Frank 2000).

·     Disability and Gender describes the power movements and the influences on people with physical or mental limitations with regard to the gender issue. The particular disadvantage of women with disabilities is particularly in focus (e.g. Jacob, Köbsell & Wollrad 2010; Boll, Ewinkel & et. Al. 1985).

·   Disability History, deal with historical relationships around people with physical or mental disabilities (e.g. Nielsen 2013).

·     Disability Worlds deals with living environments and social relationships and spaces for encounters between people with and without physical or mental limitations (e.g. Whyte & Ingstad 1995).

·     Critical Disability Studies bridge the gap between people with and without mental and physical challenges by addressing issues related to “disability” that are not addressed for historical reasons or political correctness. This includes self-critical inquiries about eugenics (DNA/ genome analysis and PND development), about the social participation of people who are artificially kept alive, i.e. those forms of life that would not be able to survive without outside help (medical and nursing discourse) or the ethical and financial responsibility of society Regarding the independent way of life of people with mental and physical challenges (political discourse; e.g. Shildrick 2012: 30-41).    

·     Disability Theology describes the exegetical and hermeneutic deficits with regard to people with physical or mental limitations in theology (e.g. Reynold 2008; Yong 2011).

·  Disability Missiology is a currently developing discipline. She questions historical descriptions such as inclusion, exclusion or discrimination against people with physical or mental disabilities. In the context of postcolonial research (post-colonial studies) these relationships are recorded in Intercultural Theology (German: Interkulturelle Theologie). In German-speaking countries, Missiology has found its way under the roof of Intercultural Theology. At the same time, the results of this research on Christian development aid in foreign contexts are made accessible by people that are physically or mentally challenged or with regard to such a target group.

·       Disability Pedagogy/ educational theory is a discipline that deals with the special needs in regard to information transfer. This includes both theoretical considerations for communication and practical technical solutions. Theoretic considerations about the haptic, visual and aural stimulation of the senses, as well as the receptive-cognitive processing of the communicative signals, play an important role. In practice, it is about computer-controlled technical assistance in the communication process, as exemplified by Braille translators, visual representations or sign language interpreting by avatars (Webb-Mitchell 1994, 1996).

3)      Disability Studies - Hermeneutic Approaches in (Intercultural) Theology

As an independent discipline, Intercultural Theology is dependent on theological-hermeneutic proposals. Disability Theology provides approaches mainly from the English-speaking world.

The best-known researcher in the field of disability theology was Nancy L. Eiesland (*1964- †2009). Her research, The Disabled God: Toward a Liberatory Theology of Disability (1994), opened up groundbreaking new discourses on the diversity of the church and its diaconal mission in theology. She builds her liberation theological approach on the ethnographic representations of Diane de Vries and Nancy Mairs (1994: 40-42 and 46). Both, like Eiesland himself, were dependent on assistance and aids. These biographies lead Eiesland to the conclusion that

both women reveal in their bodies the reality that ordinary lives incorporate contingency and difficulty. Furthermore, they embody this contingency and difficulty not only with anger and disappointment but also with respect for its unique value. (1994: 46).

In her remarks, Eiesland emphasizes that the actors’ by being different, as a deviation from the aesthetic or physical norm, imposes a stigma on the environment, but they perceive themselves as "normal". It would be an act of dipolar self-denial if people with physical or mental limitations were constantly in conflict with their being. Naturally, physically and mentally challenged physical restrictions are perceived to be compensated for. Such consist of medical-therapeutic aids or environmental variables that expand the range of motion. However, the socially constructed barriers, such as discrimination and devaluation, are the real and superfluous fighting territory, which force the marginalized on the defensive.  

The approach by Thomas Reynolds has already been mentioned; Vulnerable Communion: A Theology of Disability and Hospitality (2008). Reynolds builds on the unending moment of "hospitality" in order to establish an invitation culture in the church (2008: 20). All are invited to participate in the exposed and vulnerable body of the Christian community (: 21). He derives this vulnerability from creation as mentioned in Genesis 1 to 3 (: 168-169) and depicts it in communion and the sacrament, which reflects the creative diversity of mankind. Worth mentioning is the concept of "vulnerable love of God", which does not show itself in the omnipotence of God, but in the sinful, vulnerable and tragic embodiment of human existence. This love leads to the interdependence of people with each other, with the world and ultimately with God himself, who as creator loves this world and people in all their diversity. The marginalization of people with physical or mental limitations in “being different” as a deviation from the “normal” is eliminated in Reynolds' vulnerability and weakness as a sinful being. It would have to be clarified by Reynolds whether an all-reconciling basis is assumed here? Furthermore, how does he face the homo erectus as a self-asserting human form that does not ask for God, like critical people do, which do not ask for any closeness or communion? Otherwise, Reynold's approach is helpful in not only looking at disability and disabled people as victims or from their victimization, i.e. from the perspective of discrimination.

Amos Yong (2011) in The Bible, Disability, and the Church: A New Vision of the People of God comes from a charismatic point of view. He starts with three premises (2011: 13).

·     People with physical or mental limitations are created as Imago Dei that is in the full and intact image of God, as all people do.

·     These people are primarily people and only in secondary respects do they have a unique feature that is their individual disability.

·    Disability in itself is not bad or good, but an integral part of life. Every person experiences it, either permanently from birth, only later, or even once or several times temporarily during the life course. The direct link between sin and disability is removed in John 9, but underlined in John 5.

Yong understands disability hermeneutics challenged to look deeper into the biblical texts and avoid superficial interpretations. He ventures an overview of the healing stories and emphsizes that people with physical or mental disabilities are comforted by the healing offer of the Messiah, protecting them from charlatans, doctors and the discrimination of non-disabled people (2011: 59). He cites this thesis as strengthening the rights and self-confidence of people with physical or mental limitations, since they would be welcomed in the Church as full members who would be served directly by the Holy Spirit. For Yong, the holistic healing of multisensory restrictions represents the comprehensive power of the Holy Spirit. He goes as far as to see the church as a or better the proper space for people with physical or mental limitations, since the church gathers the marginalized (: 95).

Creamer, Deborah Beth (2009) in Disability and Christian Theology: Embodied Limits and Constructive Possibilities proposes a third model of disability, which she calls the “Limits or Gifts model” (2009: 31-34, 95-96). This model focuses on “disability as such”. Her definition of disability as in the two basic models that she recognizes, namely the medical-functional model and the social or minority group model, makes you wonder where the focus is on disability (: 22-26)? For her, “disability”, which is a threshold existence in life, has not received the necessary attention in the previous proposals. Her Limits model differs from the other models in her opinion,

“in that it does not attempt to divide participants into one of two categories (either disabled or not-disabled) but instead offers a new way to think about what disability is. It attempts to engage in critical reflection on embodied experience and offers us a way to think about the limits of each person and situation and of what such limits may enable or make difficult. ” (2009: 31)

She compares the medical model that begins with an evaluation with her limits model, which describes the limitations at the center of human life as a well-known but neglected aspect of reality (: 10). She critically reflects the Church, which does not proactively deal with “disability”, although this corresponds to the intent of the biblical text, from the law of the “widows and orphans” as in the Mosaic Law to the healing and poor parables of the New Testament (: 35). It deals with the ideas of the body in antiquity and the biblical texts. It is based on McFague’s ideas of God (1987 and 1993), which focus on a God who lives in each individual (immanence) and pervades the entire universe as energy (Transcendence; Creamer 2009: 62). Furthermore, she deals with liberation theologies. Block (2002) is of particular interest because she advocates a “model of access”. It presupposes that everyone is welcome and has a place in the church. Access in the sense of inclusion/ participation stands in contrast to the exclusion of people, who are currently unable to participate due to physical or mental limitations (Creamer 2009: 81-82).

4)      Theology of Suffering versus Differentiality and Convalescence

On the whole, all of these hermeneutical proposals for disability theology and also for disability missiology  deal with a theology of suffering (theodicy question), which consider disability as disadvantage and weakness. They go two ways. Either they interpret such a weakness themselves to God or the “being different” of the people with such a restriction is assumed as a distance from the “normal”. There is nothing to be said against these premises, but the question arises whether the creative naturalness or better creatureliness of God can be found in this in regard to the theodicy question, or whether an example of “disability” is used to show an approach that

·       either “normality” is extended or

·       demands human diversity as a reflection of inclusion by the church from a divine perspective.

Disease, temporary limitation or weakness must be differentiated to some degree from this, because they are inherent parts of human existence. It is obvious that additional hermeneutical aspects are required that present the living environment of the people who are challenged physically or mentally as their own reality. From the point of view of people with such restrictions, it is important, first of all, that the impairment does not make up the person, but is part of their reality. Any limitation represents one of many challenges that people who classify themselves as non-disabled also know. At the same time, however, there is a need and demand for society and the church to provide conditions that enable participation in public life, given a temporary or enduring physical or mental challenge.

A possible overcoming of the onset of suffering results from the principles of differentiality in conjunction with convalescence. While the first is aimed at the differences in highlighting the realities of life and also the worlds of life for disabled and non-disabled people, the latter is aimed at restoring the diversity-oriented church.

Differentiality emphasizes the uniqueness of individual realities of life. Christina Gangemi applies this uniqueness already to the unborn in the womb. It relates to prenatal pastoral care for parents who are expecting a child with physical or mental challenges (Gangemi 2018). Contrary to the common assumption that people with different life experiences should orient themselves towards “normality”, there is the fact that the individuality of every life situation represents for the person in question his inimitable reality, to which there is no alternative. Within the social framework set for this person, she now experiences the ban due to her deviation from the norm. Inclusion starts at this point and demands that the framework be designed in such a way that everyone gets along. First of all, this can only be achieved in the physical area by providing digital and physical accessibility. The subsequent possible equal encounter without being dependent on help enables the mental approximation and shifting of the “concept of normality” towards a peripheral bordershifting. This means maintaining diversity while expanding the boundaries. This enables both parties, the disabled and the non-disabled, to adapt their understanding of the “normality” of the other group. 

The second factor, “convalescence”, is an integral part of this, since it focuses the parties on a church that reflects, respects and spiritually promotes human diversity. As a consequence, the church extends its home-made limitation to groups of people that it has not previously considered in such a way that its contribution would be considered a “normal case”. The realities of the life of people with physical or mental challenges form an extension of the ecclesiastical framework with regard to the divine order of creation, which demands the diversity of human forms. The convalescence - restoration - of this human diversity is the task of the church, since the kingdom of God is a pool of all humanity.

5)      Ethical consequences of the diversity-oriented church

What ethical orientation does the church need in order to live up to an inclusion-oriented model?

 5.1) Prenatal pastoral care - balancing the rights and obligations to unborn life - Imago Dei

The Church has the mandate to provide prenatal pastoral care to parents who are expecting a child with physical or mental challenges. To do this, the church has to answer the question of how it deals with the protection of life.

The basic principle here is that the source of life is by divine foresight, but at the same time it is not the top priority of the biblical deity to preserve life at all costs, like the countless stillbirths or miscarriages, as well as the sacrifice of devoted followers of Christ to the deity as church history shows. Rather, the focus is on divine, social justice and a life devoted to followers. The quality or length of life is secondary. Incidentally, this is also the main reason for the Church's rather modest orientation towards ecological interests.

5.1.1) Consideration - Parents' and mother's rights, unborn child's rights 

Especially in the phase of pregnancy and becoming a parent, different rights of life meet. On the one hand, there is the woman and mother, who has to decide whether she with her life partner or alone is able to raise a child, in this case a child with physical or mental limitations. The life partner performs to the social support and must also decide whether to face the task. Doctors are extremely unfavorable to answer this question, since they are themselves part of the “health system” and their economic interests are - although their personal interests may be very humanitarian - contrary to the right to life. The child has a right to life, because it was an uninvolved testimony to sexual union. From a biblical perspective, the unborn child is part of divine foresight, which man must respect by weighing up the spiritual factors of birth or termination. This is where the community of believers - the Church - comes into play. Society, the Church, has the obligation to create framework conditions that parents, even with a child with physical or mental challenges face. These rights and obligations meet and need to be weighed up.

Regardless of the political framework that provides social and medical indication through pregnancy counseling, parents are affected by medical and technical pressure. This includes that doctors generally advise against the birth of a child with physical or mental challenges due to a physical, but also psychological risk. This is partly due to a paternalistic arrogance that is in the medical training system (those who have properly covered 1,000 roofs will not get a doctorate!). Furthermore, due to economic medical interests, the risk of costs that would have to be borne is pointed out, which the health insurance companies then also confirm. Another factor is social pressure, which exists in society due to a profound fear of disabilities, as a reflection of one's own impermanence. As a rule, financial arguments are argued by society. In Western cultures there is also an ideologically based evolutionary utilitarianism, or in Eastern cultures there is a religious, shameful deviation from the social “norm” and “normality”. As a consequence, this leads to ableism (in England: disableism; rejection of disabled people) and the existential categorization “unworthy of life” (Cloerkes 2007).

5.1.2) Practice of prenatal pastoral care

What can prenatal pastoral care look like in such a situation? It is important to consider the position of the child who cannot speak. The child himself knows only the one form of life in which it is born, cared for on this earth and guided into self-determination. From a creational point of view, physical or mental limitation is therefore a divine quality that contributes to the diversity of human variation. The Imago Dei should be considered in this regard and expanded if necessary. If it had been the assumption up to now that persons with physical or mental limitations would not be counted among the creation-initiated community with the Creator, this would have to be corrected. Such an assumption would also contradict the omnipotence and creativity of the creative power, which is able to provide and implement any creative option. At the same time, this creative power allows children to leave the mother's love (miscarriage), die shortly after birth (child death) or even die early in childhood due to illness, misfortune (e.g. crime, external factors) or accident. In this sense, a divine “unconditional right to life” cannot be assumed, which also corresponds to the life experience of all people.

5.1.3) Surrogate surrogacy - adoption and care

The question of “surrogacy” should also be asked here, which arises from the idea that a mother should always give birth to a child because she is free to give the child to care or adoption thus releasing her (and the partner) of responsibility. Such a requirement would make the “mother” a “surrogate mother” because she would release the child to others or to society. On the one hand, especially in the case of children with physical or mental limitations, the mother would have no guarantees that the child would be cared for at all. On the other hand, surrogacy is at risk of boosting the still existing global market for “child offers” and putting children with physical or mental constraints as an oversupply. A solution to this is not in sight, since this area forms a global social gray area, which due to increasing infertility and simultaneous birth control in certain geographic regions is not yet publicly and globally discussed as a human or population planning problem.

However, if one were to consider adoption or care, close cooperation with state authorities, in particular the youth welfare office, the local adoption office and the family court is necessary. This entails additional burdens, which are rarely cushioned by church institutions. In this area, an institutional network of church employees with the authorities would be helpful to ensure the accompaniment of an unwanted pregnancy. The observation that mothers and fathers rethink possible parenthood in the light of their births also plays a role here.

5.1.4) Balancing the living environment of the parents 

The general conditions of the parents / life partners are an important factor, since they form the stability for the coexistence of the core and the extended family. It is important to consider how the parents are able to cope with the challenges of a child who has a greater need for assistance and care. For this, experiences of other people are absolutely necessary and helpful. The opinion and experience of parents who have decided against this form of parenthood must also be brought into play. The question of how a decision consequently affected the future path of life remains speculative, since it has not been proven to have been experienced. Nevertheless, a consideration can take place due to the life cycle, since the given life descriptions have to be weighed up. Prenatal pastoral care represents a common guide to making your own decision and proceeds without prejudice, whereby it is clear that no pastoral counseling would be objective or neutral. It should also be noted here that neither the pro-familia (offered by the state ishttps://www.profamilia.de/)objective, since there are personal, health-medical and economic interests, and private advice such as that provided by Pro Femina e. V. (https://www.profemina.org/) can be value-neutral, since the latter is a by Christian ethics motivated organization.

5.2) Church inclusion - unity in diversity - challenges and profit

The church faces far-reaching challenges. As the architectural designs of the churches, which have been politically required since the 1980s, show that people with physical or mental disabilities are not included, it is not for nothing that they are included. The consequence is a willingness to assist, to open circles for “the others” and thus to limit one's own expectations in favor of others. Above all, the pressure to perform in groups of children and adolescents after an attractive program, such as that which exists in the church, must be weighed in the face of children who need assistance with the life experience that a child receives when he learns about the realities of life in other life forms. In particular, the experience that divine creative power encompasses very different living environments is a fundamental finding at a young age. The long practiced and still existing practice of home accommodation, special needs schools without any connection to the public school system, and extra services at the homes and the special needs schools do not allow contact zones. The state-sponsored principle of inclusion must also prevail in the church in order to offer contact zones.

Are church members willing to involve people who allow stuttering and leave the usual flow of communication in order to accept less information within a considerable amount of time? Are visual support aids of what has been said disruptive for people with hearing impairments, or do they become normal and also serve as support for other church visitors? Is the mentally restricted child in the children's program a burden or an asset? These questions should be discussed and common solutions sought, with an emphasis on shared solutions by employees, parents and children with physical or mental challenges.

To conclude these considerations, it should be emphasized once again that a church, as a reflection of divine creativity, reflects a “unity in diversity”, which only receives its spiritual output in the presence by the Creator. This perspective on posterity relativizes current reality of life and emphasizes the social justice demanded in the Sermon on the Mount and dedicated succession as emphatic sympathy with the most diverse realities of life on earth.

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