werner@forschungsstiftung.net

Abstract

Theological models and approaches to disability studies have been widely available since at least 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 in political science. Bringing up the rear at the moment is intercultural theology, which is only slowly approaching the topic and has to come to terms with the history of Christian diakonia in transcultural encounters from a postcolonial perspective. Also missing are own hermeneutical proposals for the inclusive church from the point of view of “unity in diversity” and diversity as a reflection of the kingdom of God.

Contents

Introduction – From “I” and “The” to the common “We”. 1

Disability Studies – Areas of research. 2

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

Theology of Suffering versus Differentiality and Convalescence. 5

Ethical consequences of the diversity-oriented church. 6

Prenatal pastoral care – balancing rights and duties to unborn life – Imago Dei 6.

Balancing – parental and maternal rights, unborn child rights. 6

Practice of prenatal pastoral care. 7

Balancing surrogacy – adoption and foster care. 7

Balancing living environment of parents. 8

Church inclusion – unity in diversity – challenges and gains. 8

Bibliography. 9

 

Introduction – From “I” and “Them” to the common “We”.

Inclusion, participation and involvement of all social groups in public opinion form the basis of a democratic and diversity-oriented society. Persons with mental and physical challenges need help from those without limitations. In turn, they enrich and complement research around societal diversity through their own biographical experiences. The lifeworlds of researchers with mental and physical challenges offer a perspective to science in all areas of life that is a total humanistic representation. The previous abandonment of the perspective of persons with mental and physical challenges in science, which can be described as paternalistic, should be a thing of the past. The “I” and “The” should give way to a “We” that is willing to take an overall perspective on research projects. At this point, “normality” shifts to people who are part of society and who, precisely in their “otherness,” enrich society and challenge it for inclusion or social support. The mutual give and take in these processes is exhausting and does not fall to the person inclined to comfort. This also applies to people with mental and physical limitations, who cannot rest on their marginalization.

Only in cooperation does a mutual give and take arise on an equal footing. Scientific research in theology and missiology must also face up to this inclusive approach if it does not want to remain one-sided and paternalistic but dynamic and relevant to society.

Disability studies enable researchers with and without disabilities to discuss missiological-theological issues together and to look at biblical content from different perspectives. In this context, the debate about a bridge-building cooperation between researchers with and without physical or mental limitations should already be superfluous, since although the life realities of both groups are different, a cooperation is of mutual benefit. Only when both groups exchange ideas, try to understand each other and complement each other, science is holistically oriented. Practically, this also means meeting the support needs of researchers with physical or mental challenges. An elevator, a ramp, or mental health care won’t happen on its own; efforts by non-disabled people are needed. In turn, these researchers learn about research-relevant content regarding the realities of life for people with physical or mental challenges, which provides an overall social picture. “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 aims to inform about the current range of research on the field of Disability Studies from a theological perspective.

Disability Studies – Research Areas

Disability Studies is an umbrella term for all research around disability as a socio-cultural phenomenon. Medical, diaconal-care, technological, rehabilitative, sociological, theological-religious, anthropological-ethnographic aspects from historical and contemporary perspectives play a role here. From this multitude of options, specific areas of expertise have crystallized, but new areas of research are being added daily. In order not to lose the overview, we limit ourselves to those areas which are significant from an intercultural theological and missiological perspective:

Disability Anthropology presents ethnographic-biographical lifeworlds of physically and mentally challenged people (e.g., Gelya Frank 2000).
Disability and Gender describes the power movements and influences on people with physical or mental limitations in terms of gender. The particular disadvantage of disabled women is specifically in view here (e.g., Jacob, Köbsell & Wollrad 2010; Boll, Ewinkel & et. al. 1985).
Disability History, deal with historical contexts around people with physical or mental disability (e.g., Nielsen 2013).

Disability Worlds deals with lifeworlds and social references and spaces of encounter between people with and without physical or mental limitations (e.g., Whyte & Ingstad 1995).
Critical Disability Studies bridges the gap between persons with and without mental and physical challenges by addressing questions about disability that have not been addressed for historical reasons or by political correctness. These include self-critical inquiries about eugenics (DNA analysis and PND development), the social participation of artificially kept alive persons, i.e., those life forms that would not be viable without outside assistance (medical-care discourse), or society’s ethical and financial responsibilities regarding independent living for persons with mental and physical challenges (political discourse; e.g., Shildrick 2012:30-41) .
Disability theology describes the exegetical and hermeneutical deficits with regard to persons with physical or mental disabilities in theology (e.g., Reynold 2008; Yong 2011).
Disability missiology is a currently developing discipline. It questions within the framework of historical descriptions how inclusion, exclusion, or discrimination of people with physical or mental disabilities has been understood. Within the framework of postcolonial research (postcolonial studies), these contexts are captured in intercultural theology. In the German-speaking world, missiology has partially come under the umbrella of intercultural theology. At the same time, the yield of this research is made accessible to Christian developmental assistance in foreign contexts by people with disabilities themselves or with regard to such a target group.
Disability Pedagogy/ educational theory is a discipline that addresses special needs in the communication of information. This includes theoretical considerations of communication as well as practical technical solutions. In theory, haptic, visual and aural stimulation of the senses, as well as receptive-cognitive processing of communicative signals play an important role. In practice, it is about computerized technical assistance in the communication process as exemplified by Braille translators, visual displays, or sign language interpretation through avatars (Webb-Mitchell 1994, 1996).
Disability Studies – Hermeneutic Approaches in (Intercultural) Theology
As a discipline in its own right, Intercultural Theology depends on theological hermeneutical proposals. Disability theology offers approaches mainly from the English-speaking world.

The best known researcher in the field of disability theology was Nancy L. Eiesland (b. 1964-†2009).

Her research The Disabled God: Toward a Liberatory Theology of Disability (1994) opened groundbreaking new discourses in theology around the diversity of the church and its diaconal mission. She builds her liberation theological approach on the ethnographic accounts of Diane de Vries and Nancy Mairs (1994:40-42 and 46). Both, like Eiesland herself, relied on assistance and tools. These biographies lead Eiesland to conclude,

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).

Eiesland emphasizes in her remarks that the actors with their being different, as a deviation from the aesthetic or physical norm, have a stigma imposed on them by their environment, but feel themselves to be “normal”. It would be an act of dipolar self-denial if people with physical or mental limitations were constantly in conflict with their being. Of course, physically and mentally challenged people perceive physical limitations that they have to compensate for. This may consist of medical-therapeutic aids or environmental variables that extend the range of motion. However, the socially constructed barriers, such as discrimination and devaluation, are the real and superfluous territory of struggle that force the marginalized on the defensive.

The approach has already been mentioned in Vulnerable Communion: A Theology of Disability and Hospitality by Thomas Reynolds (2008). Reynolds builds on the unifying moment of “hospitality” to establish a culture of invitation in the church space (2008:20). All are invited to share in the vulnerable and vulnerable body of Christian community (Vulnerable Communion) (:21). He derives this vulnerability from the creation order (:168-169) and models it in communion/communion, which reflects the creaturely diversity of humanity. Worth mentioning is the concept of “God’s vulnerable love”, which is not shown in God’s omnipotence, but in the sinful, vulnerable and tragic configuration of human existence. This love leads to the interdependence of human beings with each other, with the world, and ultimately with God himself, who as Creator loves this world and human beings in their diversity. The marginalization of people with physical or mental limitations in “being different” as a deviation from the “normal” is cancelled out for Reynolds in the vulnerability and weakness of the human being as a sinful being. It would have to be clarified with Reynolds whether an all-reconciling basis is assumed here? Furthermore, how does he see himself in the face of a homo erectus, a human form asserting itself as itself, which does not need God?

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

People with physical or mental disabilities are created as Imago Dei in the image of God.
These people are first and foremost human beings and only secondarily endowed with a unique characteristic, their individual disability.
Disability is not in itself evil 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 course of life.

The direct link between sin and disability, while broken in John 9, is underlined in John 5.
Yong sees this as challenging hermeneutics to look deeper into the biblical texts and avoid superficial interpretations. He ventures a survey of the healing stories, which seem to him to comfort people with physical or mental disabilities in that the Messiah’s offer of healing would protect them from charlatans, medical practitioners, and the discriminations of non-disabled people (2011:59). He cites this thesis as enhancing the rights and self-esteem of people with physical or mental limitations, as they would be considered full members in the church, served directly by the Holy Spirit. For Yong, the holistic healing of multisensory limitations depicts the comprehensive power of the Holy Spirit. He goes so far as to see the church as an original space for people with physical or mental limitations, as 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 places “disability as such” at the center. Her definition of the two basic models recognizable to her, into the medical-functional model and the social or minority group model, leads her to ask where is the focus on disability there? (:22-26)? “Disability,” which is, after all, a liminal aspect of life, does not get the attention it deserves in the previous proposals. Their Limits model differs from the other models in that, in their 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, which begins with an evaluation, to her limits model.

Limits model, which describes limitations at the center of human life, as a familiar but neglected aspect of reality (:10). Critically, she reflects on the church that does not proactively address “disability,” although this is in keeping with the intent of the biblical text from the widows and orphans commandment of the Mosaic Law, to the healing and poor parables of the New Testament (:35). She engages with the body concepts of antiquity and the biblical texts. She borrows from McFague’s conceptions of God (1987 and 1993), which focus on a God who both lives in each individual (immanence) and permeates the entire universe as energy (transcendence; Creamer 2009:62). She goes on to address liberation theologies. Block (2002), in particular, is of interest because she advocates a “model of access.” She presupposes that all are welcome and have a place in the church. Access in this sense contrasts with the exclusion of people who are currently unable to participate due to physical or mental limitations (Creamer 2009:81-82).

Theology of suffering versus differentiality and convalescence.

In the grand scheme of things, all of these hermeneutical proposals for disability theology and also disability missiology deal with a theology of suffering (theodicy question), which view disability as disadvantage and weakness. In doing so, they take two paths. Either they interpret God himself as such a weakness or the “otherness” of the persons with such a limitation is presupposed as a distance from the “normals”. There is nothing to be said against these premises, but the question arises whether the creative naturalness or better creatureliness of God is found in this approach to the question of theodicy, or whether it is not precisely the example of “disability” that shows an approach which

either expands the concept of “normality” or demands human diversity as a reflection of ecclesial inclusion from a divine perspective.
Illness, temporary limitation or weakness are to be distinguished from this as inherent in being human. It is obvious that there is a need for additional hermeneutical aspects that present the lifeworld of persons who are physically or mentally challenged as their own life reality. From the point of view of persons with such limitations, it is first significant that the impairment does not constitute the person, but is a part of their life reality. The impairment represents one of many challenges, as it is also known by people who classify themselves as non-disabled. At the same time, however, there is the need and demand on society and the church to provide conditions that enable participation in public life.

A possible overcoming of the suffering approach results from the principles of differentiality in connection with convalescence. While the former is directed to highlight the difference of life realities and also life worlds of disabled and non-disabled persons, the latter is directed to the recovery of the diversity-oriented church.

Differentiality emphasizes the uniqueness of individual life realities. Gangemi begins this uniqueness in the womb. She refers to prenatal pastoral care to parents expecting a child with physical or mental challenges (Gangemi 2018). Contrary to the common assumption that people with deviant life experiences must orient themselves to “normality,” the fact is that the individuality of each life situation represents first of all for said person his inimitable reality to which there is no alternative. Within the social framework set for him, he now experiences ostracism because of his deviation from the norm. Inclusion starts at this point and demands that the framework conditions be designed in such a way that everyone can cope. First of all, this can only be achieved in the physical realm by providing digital and physical accessibility. The resulting equal encounter without having to rely on assistance enables the mental approach and shift of the “concept of normality” towards peripheral bordering. What is meant by this is the maintenance of difference while expanding the boundaries. This allows both parties, the disabled and non-disabled, to adjust their understanding of the “normality” of the other group. The second factor, “convalescence” is directly part of this, as it aligns the parties with a church that reflects, respects, and spiritually nurtures human diversity. This means, in consequence, that the church extends its home-made limitation to groups of people whom it has not had in mind so far that their contribution would be counted as the “normal case”. The reality of life of persons with physical or mental challenges constitutes an extension of the ecclesial framework with regard to the divine order of creation, which calls for the diversity of human forms. The convalescence – restoration – of this human diversity is the task of the church, as the kingdom of God is a gathering place for all.

Ethical consequences of the diversity-oriented church
What ethical orientation does the church need in order to live up to an inclusion-oriented mission statement?
Church inclusion – unity in diversity – challenges and gains
The church has a mandate to participate in prenatal pastoral care to parents who are expecting a child with physical or mental challenges. For this, the church must ask the questions

how it holds it with the protection of life.

The principle is that the source of life is divine providence, but at the same time, the top priority of the biblical Godhead is not to preserve life at all costs, as the countless stillbirths and miscarriages, as well as the sacrifice of devoted followers of Christ in church history, show. Rather, the emphasis is on a life devoted to divine social justice and discipleship. The quality or length of life is secondary. Incidentally, this is also the main reason for a rather modest orientation of the church to ecological interests.

Balancing – parental and maternal right, unborn child right.
It is precisely in the phase of pregnancy and becoming parents that various rights to life come into conflict. On the one hand, there is the woman and mother, who must decide whether she is able to raise a child with her life partner or alone, in this case a child with physical or mental limitations. The life partner forms the social support and must also decide whether to take on the task. Doctors are inconvenient to answer this question, because they themselves are part of the “health care system” and their economic interests are contrary to the right to life. The child has a right to life because it was a witness to the sexual union in an uninvolved way. From a biblical perspective, the unborn child is subject to a divine prediction that man must respect by weighing the spiritual factors of birth or abortion. This is where the community of believers – the Church – comes in. Society, the Church, has the obligation to create frameworks that are fair to parents, including those with a child with physical or mental challenges. These rights and responsibilities meet and must be weighed.

Regardless of the political framework, which provides for a social and medical indication through pregnancy counseling, the parents are hit by the medical-supply pressure. This includes the fact that, as a rule, doctors 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 inherent in the medical profession’s training system (if you have covered 1,000 roofs professionally, you don’t get a doctorate!). Furthermore, due to economic medical interests, the danger of costs that would have to be borne is also pointed out, which is then confirmed by the health insurance companies. Another factor is the social pressure, which exists in society due to a profound fear of disabilities, as a reflection of one’s own transience. As a rule, this is argued with financial burdens for society.

The principle is that the source of life is divine providence, but at the same time, the top priority of the biblical Godhead is not to preserve life at all costs, as the countless stillbirths and miscarriages, as well as the sacrifice of devoted followers of Christ in church history, show. Rather, the emphasis is on a life devoted to divine social justice and discipleship. The quality or length of life is secondary. Incidentally, this is also the main reason for a rather modest orientation of the church to ecological interests.

Balancing – parental and maternal right, unborn child right.
It is precisely in the phase of pregnancy and becoming parents that various rights to life come into conflict. On the one hand, there is the woman and mother, who must decide whether she is able to raise a child with her life partner or alone, in this case a child with physical or mental limitations. The life partner forms the social support and must also decide whether to take on the task. Doctors are inconvenient to answer this question, because they themselves are part of the “health care system” and their economic interests are contrary to the right to life. The child has a right to life because it was a witness to the sexual union in an uninvolved way. From a biblical perspective, the unborn child is subject to a divine prediction that man must respect by weighing the spiritual factors of birth or abortion. This is where the community of believers – the Church – comes in. Society, the Church, has the obligation to create frameworks that are fair to parents, including those with a child with physical or mental challenges. These rights and responsibilities meet and must be weighed.

Regardless of the political framework, which provides for a social and medical indication through pregnancy counseling, the parents are hit by the medical-supply pressure. This includes the fact that, as a rule, doctors 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 inherent in the medical profession’s training system (if you have covered 1,000 roofs professionally, you don’t get a doctorate!). Furthermore, due to economic medical interests, the danger of costs that would have to be borne is also pointed out, which is then confirmed by the health insurance companies. Another factor is the social pressure, which exists in society due to a profound fear of disabilities, as a reflection of one’s own transience. As a rule, this is argued with financial burdens for society.

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 for himself. The child itself knows only the one form of life in which it is born, cared for on this earth and led into self-determination. From the point of view of the creation approach, therefore, the physical or mental limitation forms a divine quality, which contributes to the diversity of human variation. The Imago Dei is to be thought in this respect and, if necessary, to be extended. If it were the assumption to date that persons with physical or mental limitations would not be counted among the creation-initiated communion with the Creator, this would have to be corrected. Such an assumption would also contradict the omnipotence and creativity of the power of creation which is able to provide and to realize any creative option. At the same time, this power of creation allows children to perish in maternal love (miscarriage), to die shortly after birth (infant death) or to die in early infancy through illness, misfortune (e.g. crime, external factors) or accident. In this sense, an “unconditional right to life” cannot be assumed, which also corresponds to the life experience of all people.

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 for himself. The child itself knows only the one form of life in which it is born, cared for on this earth and led into self-determination. From the point of view of the creation approach, therefore, the physical or mental limitation forms a divine quality, which contributes to the diversity of human variation. The Imago Dei is to be thought in this respect and, if necessary, to be extended. If it were the assumption to date that persons with physical or mental limitations would not be counted among the creation-initiated communion with the Creator, this would have to be corrected. Such an assumption would also contradict the omnipotence and creativity of the power of creation which is able to provide and to realize any creative option. At the same time, this power of creation allows children to perish in maternal love (miscarriage), to die shortly after birth (infant death) or to die in early infancy through illness, misfortune (e.g. crime, external factors) or accident. In this sense, an “unconditional right to life” cannot be assumed, which also corresponds to the life experience of all people.

Weighing up the living environment of the parents

The living environment of the parents/life partners is an important factor, as it provides the stability for the nuclear and extended family to live together. It must be weighed up how the parents are able to deal with the challenges of a child who has increased assistance and care needs. 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 included. The question of how a decision affected the further course of life remains speculative at first, since it was not demonstrably experienced. Nevertheless, due to the life paths a consideration can take place, since the delivered life descriptions are to be weighed. The prenatal pastoral care represents thereby a common guidance to an own decision and proceeds without preliminary judgments, whereby it is clear that no pastoral counseling would be objective or value-neutral. It is equally to be noted here that neither the state-provided Pro-Familia (https://www.profamilia.de/) counseling is objective, since there are personal, public health, and economic interests, nor private counseling such as that provided by Pro Femina e. V. (https://www.profemina.org/) can be value-neutral, since the latter is a Christian-motivated organization.

Church inclusion – unity in diversity – challenges and gains

The church faces far-reaching challenges. As the architectural designs of churches for accessibility, which have been politically demanded since the 1980s, show, inclusion of people with physical or mental limitations is also not to be had for free. A readiness for assistance, the opening of circles for “the others” and thus a limitation of own expectations in favor of others is the consequence. Above all, the pressure to perform in children’s and youth groups according to an attractive program, as it exists in the church, must be weighed against the life experience a child receives when it gets to know the reality of other ways of life, in view of children who are dependent on assistance. In particular, the experience that divine creative power encompasses very different life worlds is a fundamental realization at a young age. The long practiced and still existing practice of institutionalization, special special schools without connection to the public school system, and extra religious services in the homes and special schools does not allow for contact zones. The state-sponsored principle of inclusion must also prevail in the church in order to provide contact zones.

Are church members willing to allow people who stutter to participate, leaving the usual flow of communication to accept less information at a significant cost in time? Are visual supports of what is being said disruptive to people with hearing impairments, or do they become the norm and serve as a support to other church attendees as well? Is the mentally impaired child in the children’s program a burden or an asset? These questions should be discussed and joint, emphasis on joint, solutions sought by staff, parents, and children with physical or mental challenges.

In concluding these reflections, it should be emphasized once again that a church as a reflection of divine creativity reflects a “unity in diversity” that receives its spiritual yield only in the presence with the Creator. This perspective into posterity relativizes this present reality of life and emphasizes the social justice and devoted discipleship called for in the Sermon on the Mount as emphatic co-suffering of the most diverse realities of life on this earth.

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