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“Critical Revolutionary Pedagogy is Made by Walking”

(McLaren and Jandric 2014: 805).

“When we discussed it at our table, it

wasn't for the world to debate”

(Nash, Lisa quoted in Hendrickson,

Molly. 2017: online source).

The first opening quotation to this section by Professor of Education and Critical Studies, Peter McLaren, and Professor of Informatics, Petar Jandric, bases the making of critical pedagogy on walking. In a future chapter, I will return to walking when emphasizing that “discourse,” in its etymology, means walking (back and forth). In this sense, McLaren and Jandric’s statement describes the development of a discourse of a critical pedagogy as never coming to a standstill but being, at the core of it, based on the ability to create and interrupt meaning and to move back and forth between streams of thoughts, conditions, people, forms of enquiry and so on. Thus, within the framework of critical pedagogy, pedagogy is an on-going active process in scholarship and practice that is sensitive towards examining how education (re-)generates both inequality and injustice, as powers are acting intersectionally (Beck 2005). The following section provides a brief insight into scholarly cornerstones I passed when dis-coursing towards the PhD study this book is based on.

More often than not people I spoke to during the years of this study asked in which discipline I would defend the PhD study. This had also been the case as my “home discipline,” pedagogy, does not exist or is understood very differently in the countries where I shared most collegial conversations during the years of this study. Emphasizing the interdisciplinary nature of the study and understanding that it is written in the years during which the term “postdisciplinarity” was becoming popular and powerful, I regularly responded to questions by explaining how my study was informed and deeply rooted within my training as a social worker and in pedagogy. Given that I received my diploma in pedagogy from the Johann-Wolfgang Goethe University in Frankfurt am Main, I was exposed to a fair degree to the work of the Frankfurt School as part of my pedagogical studies. One of the main thoughts I “inherited” from my studies in Frankfurt am Main was that “social inquiry ought to combine rather than separate the poles of philosophy and the social sciences” (Bohman 2005). Max Horkheimer described “human emancipation” as the main goal of work within the interface of philosophy and the social sciences (ibid). Thus, within my theoretical training as a pedagogue the importance and interdependence of philosophy and pedagogy was emphasized.

[20] It was also during my time in Frankfurt am Main that theoretical notions of the Leib re-entered my work, and I understood that “Die Leiblichkeit bildet die Grundlage allen pädagogischen Handelns”⁶ (Liebau 2013). If so, then understanding Leiblichkeit is the pre-requisite to professional pedagogical agency. However, understanding Leiblichkeit and Leibsein⁷ (in its entirety) is not possible without an embodied engagement and a sensory exposure, which in turn creates the bases of pedagogical agency. This study, although focusing in on RGTs and biomedical developments, offers a topical entry point to studying Leiblichkeit and to engaging with it in an embodied manner. Additionally, it communicates with numerous studies published in pedagogy that examine influences of RGTs on motherhood, childhood and identity (Colpin 2002, Funcke and Thorn 2010, Malek 2006, Freeman and Golombok 2012, Golombok et al. 1996).

While studying in Frankfurt am Main, I worked full-time as a social worker with trauma-experienced persons, mainly women who had experienced sexual and/or domestic violence and/or displacement. This work informed, from a practice-based background, my interest in the Leib and in aesthetic education as it focuses on the Leib and on “leibsinnliches Erleben und Erfahren”⁸ (Mattenklott 2013: online source). My interest in notions of Leib, became important in my daily work as a social worker, and more so due to the inclusion of aesthetic education in my work. At the same time, triggered by both my studies and my pedagogical practice, I became more interested in the question of who we are to and with each other. What is a human being to another human being? What shapes our relatedness, our interdependent existence and at the same time, hierarchies as they play out among humans? Professor of Pedagogy at the University of Erlangen-Nürnberg Eckart Liebau underlines: “Menschen leben in Beziehungen; sie können gar nicht anders”⁹ (Liebau 2013: online source). Two crucial components of my practical and theoretical work in pedagogy thus have been and continue to be: 1. an educational approach inclusive of Leib, as it presents itself in aesthetic education and, 2. the understanding that humans are at any given point in time Mitmenschen; a term that I will leave in this text as a “stranger,” as translation scholar Carolyn Shread puts it (Shread 2016: presentation). After years of trying to translate it, I’ve come to the understanding that I cannot find a translation that transports all of its nuanced meanings. If I have to translate it in conversations, I use the term “with-human” to underline the inescapability of with/mit as human condition.

[21] In my understanding, offering an entry point to studying Leiblichkeit and contemporary challenges to how we are Mitmenschen to each other is fundamentally pedagogical. It provides a terminology with which to discuss how biomedical developments enter the private space of the family. An example is savior siblings, genetically “designed” to save a sibling’s life, raising deeply pedagogical questions such as: Is having a savior sibling using the child exclusively as a means to an end? How do such novel social and hierarchical family structures impact the development of both children, their identity and relationship with each other? And finally, is there no longer a family table? To phrase the last question differently: are decisions about having or not having children (and the why behind those decisions) no (longer) intimate and ultimately private for families to make at their families’ tables?

The second opening quotation to this section is from Lisa Nash, the mother of Adam Nash, who in 2001 was born in the US as the first known savior child to benefit his sister Molly. When I read the interview with Adam Nash’s parents, I was struck by Lisa Nash’s idea that discussing planning to have a savior sibling child could possibly be a discussion she and her husband could own in so far as that it only would regard their private sphere, in the sense of not leaving the family’s table. While not dealing with savior siblings in this study, in analyzing RGTs and biomedical developments, as well as new injustices and the global nature of biomedical practices, this study provides a vocabulary and background knowledge to discuss questions arising from, as Maura Dickey puts it, “having a child for their spare parts.” (Dickey 2015: online source) It furthermore points to the fact that even if Pre-Implantation Diagnostic (in the literature referred to PGD or PID or PIGD)¹⁰ and related medical procedures involved in the “creation” of a savior sibling to be born are currently not legal in three European countries, including Germany, this could result in a couple traveling to another country to undergo procedure, as done by the English couple Katie and Andy Matthews, who went to the US to undergo PID procedures resulting in the birth of their son Max in 2003, who acted as a savior sibling for his sister Megan (Walsh 2010: online source).

If we are going to treat children as if they are merely made of harvestable parts, then we should also establish legal standards that provide an independent advocate for the savior sibling. It is uncommon for such a polarizing practice to be left unaddressed, particularly in the realm of protecting or exploiting human dignity. The rapidly evolving arena of bioethics is a force to be reckoned with, threatening to dismantle the traditional view that the parent knows best. But to frame the conditions for such an ethically questionable practice is far better than simply continuing to stand by and do nothing. (Dickey 2015: online source)

[22] To address pedagogical questions that arise from developments in RGTs and biomedicine and are related to identity, family dynamics, parenthood and so on, I did find it crucial to investigate the “space between” disciplinary voices, vocabularies, and research among the following disciplines. The following list emphasizes pedagogy, as my disciplinary “home” at the top of the list. Below pedagogy, in alphabetical order, are the disciplines with which this study builds conversational structures. While I can’t display a dynamic and interactive figure in this print, I request that you imagine the various disciplines and schools of thoughts listed to be in a lively conversation, with various voices joining in at different times.

Pedagogy

• Anthropology

• Architecture and Urban Studies

• Art History and Studio Art

• Biology

• Disability Studies

• Economics

• Ethics and Religious Studies

• Global Studies and International Relations

• Jewish Studies

• Legal Studies

• Medicine and Life Sciences

• Philosophy

• Postcolonial Studies

• Science Studies

• Translation Studies

• Women's Gender and Feminist Studies

Chapter seven which looks at art as a tool to engage with developments in RGTs and biomedicine activates the idea of an interdisciplinary conversation in a different manner. There I invite a group of people to a dinner table to have a conversation.

In 2005, I presented a paper at the European Science Foundation Conference. The conference was called “Biomedicine within the limits of Human Existence and took place in Doorn in the Netherlands.” One of the other presenters was Laurie Zoloth, who currently is the Margaret E. Burton Professor of Religion and Ethics in the Divinity School and the Senior Advisor to the Provost for Programs on Social Ethics at the University of Chicago. In the past, she acted as president of the American Society for Bioethics and Humanities. Like so many presentations that I listened to at the time, her presentation titled “Living Under the Fallen Sky” first approaches ethical questions of what she calls “basic biomedical research” from various disciplinary directions before inserting private information, such as the memory of driving her children back from school, the color of her daughter’s hairclip, and finally the story of her family’s [23] visit to a water park. Still very insufficient as a listener to English presentations in the complex field of biomedicine, I struggled to follow her argument. In front of my inner eye were images of the snow falling in front of Zoloth’s window in Chicago, petri dishes, the color of one of Zoloth’s daughter’s hair clip forgotten in the garden, stem cells, Zoloth’s son in the back of her car when driving back from a school retreat demanding to go to a water park, and a 27- week-old baby struggling to breathe born to a devoted Hindu couple in the US, his mother wearing a yellow sari and both parents being good cooks. As I listen, my brain struggles to handle what feels like an overload of detailed information that seem unrelated to the topic addressed. In this dense mix of information and stories, I reach first a state of exhaustion and then gratefulness when towards the end of her presentation Zoloth’s mandate appears simple and manageable. She states: “We ought to remember that our neighbor, the scientist, is largely driven by the same sort of duties that any scholar learns to love – to speak the truth, and to show a new path across interesting terrain. Further, we need to work patiently to remind others that it is not rights but duties that make us human, and that the duty to heal is even prior to freedom” (Zoloth 2008: 309). Yes, it is true that my neighbor, in the sense of the person sitting next to me during ethical discussions regarding biomedical research that I attended (for example at the European Commission), would very likely have been a scientist and I agree, it did not appear that evil (a word Zoloth uses throughout her work) would have been on their mind when talking about the motivation for research conducted. Money and being at the “forefront” of research was though. My brain fails to filter information received by Zoloth. Instead, I take her story-soaked presentation as impulse to understand that biomedical research is about everything, even the color of one’s daughter’s hair clip. It is about memories and hopes for certain futures to materialize. However, if it is about everything, it is precisely also about biomedical research repeating, re-establishing and re-enforcing intersectional injustices, such as between citizens of Eastern European and Western European countries, when it comes to either be recipient of a novel treatment developed or provider of bodily substances used in research.

As a means to echo and “swing with” the notion that so much about how RGTs and biomedical practices are framed and discussed in various public spheres is about memories and hopes, I will conclude this section by having Foucault entertain the thoughts of a postdiciplinary pedagogue. Finally, I will end this section with a pedagogical voice from the past and thus with a memory. In my reading, Foucault’s idea of researchers as “the product of particular regimes of truth” relates well with notions developed by Henry Giroux, one of the founding theorist of critical pedagogy in the United States, best known for his groundbreaking work in public pedagogy. In his book, Trans(per)forming African American History and Identity, Maurice Stevens uses Giroux’s words and partly his own words to underline that we need to be [24] “advancing a pedagogical practice capable of ‘questioning the very conditions under which knowledge and identities are produced.’ […] Giroux posits that postdisciplinary pedagogy responds to the problem of ‘the relationship between knowledge and power, language and experience, ethics and authority […].’ Giroux’s postdisciplinary pedagogy, ‘examines the intersection between culture and power’” (Stevens 2003: 173 and Giroux cited in Stevens 2003: 173). When listening to lectures, such as the one referred to above by Zoloth, Foucault’s awareness of the situatedness of any research and any researcher and Giroux’s future leading work addressing necessary challenges to take on in postdiciplinary pedagogical research and practice, helped me to acknowledge that a researcher, such as Zoloth, found it important to provide the mix of information she provided. Yet, it is just as crucial for me as a pedagogy scholar to understand both the knowledge provided and ways in which I hear and think about it as situated within a net of culture and power.

One of the first pedagogues I ever learned about was Janusz Korczak.¹¹ I believe that I did not first hear about him in an educational environment, but at home in the private sphere. Korczak is believed to have said, “children are not future people” (Korczak 1994: 4). Throughout this study it has been my training and my practice in pedagogy, but also the acquaintance of long-term “companions” such as Korczak, that continually reminded me to pay attention to what it is that diverse people experience now, instead of focusing on future promises or lives. In my pedagogical practice paying attention to what people experience now, and indeed using experiences in the here and now is a resource. For example, in the field of aesthetic education, attuning to the here and now has been a crucial tool to a pedagogy that is based on relational respect.

While Korczak’s statement is commonly read as an argument to respect children fully as persons, for me, his open and clear declaration had the capacity to remind me that first of all it is our responsibility as pedagogues to engage in the making of environments that foster societies to further human kind in performing being Mitmensch to each other and not being “more” Mitmensch to some than to others. I came across Korczak’s words again, shortly after rereading opinions on Adam Nash’s birth. Next, I came across a statement by Adam’s father who recently stated, “I think that what was the controversy, is, ‘What have we created?’” (Nash, Lisa. Quoted in Hendrickson, Molly, 2017: online source).

I suggest that in relation to Adam’s story, Korczak’s term “future people” can be read as a reminder of the peopled space of the here and now in which pedagogy acts. Every child, every person, has the right to first of all be a person in the here and now. Adam however, per my extended reading of Korczak’s concept, was a future person. He was a future person first; he was the one to [25] come into the future of his family, as discussed and planned on their family table, to save his sister’s future life. There is something unsettling about the idea of future people. And that something also has to do with the fact that there isn’t just one Adam being born after a discussion on one family table. Adam’s birth eased the path for legal frameworks outlining savior siblings to be discussed in various parliaments. Mostly, these discussions focus on PID as a selective medical practice and in some countries include the discussion of the Kantian maxim, as mentioned above. What is missing from the discussion at large, in my opinion, is an in-depth analysis of the situation of savior siblings’ childhood, and of how being born with the expectation to save another person’s life as well as undergoing regular medical interventions to do so impacts their identity and the identity of their sibling(s). Parents who plan a savior sibling’s birth are also the legal guardians who make medical decisions for this child. If the child’s birth was planned to save a sibling’s life, if that’s the trajectory, how could there be the space for parents to acknowledge that medical interventions that the savior sibling undergoes to help its sibling might be too difficult for them? Dr. Simon Fischel, a UK based fertility specialist who has treated couples to conceive a savior sibling “believes that concerns about the long- term implications for the donor child should not stop the conception of a savior sibling. ‘There is no evidence that when an aura of goodwill and good health exists for that child, that it would be psychologically damaged even if the treatment doesn't work,’ says Fischel” (Wheelwright 2004: online source). Conversely there is no proof that there wouldn’t be long-term psychological effects either.

As the example above illustrates, RGTs and biomedical research raise very complex questions. Both RGTs and biomedical research act on the level of embodiment and on the level of identity. They also change ideas of who we are to each other through the very practice of how bodily substances travel between bodies. This study looks at some of the complexities involved in RGTs and biomedicine, acknowledging that in order to make a contribution to a vocabulary that would allow for experts from various disciplinary backgrounds to discuss issues, this study has to be inclusive of discourses, voices, and concerns as they stem from various disciplines. Having acted as a bioethics expert in European Commission meetings in the past, and having listened to discussions involving experts from different disciplinary backgrounds, the need to be able to speak to each other became utterly clear to me. Again, this also brings back the question of how we are Mitmensch to each other. Are we speaking to each other or are we trying to convince each other? To exemplify, the “Translational Medicine and Public Health Policy: Lessons from Biobanks Ethical, Legal, Social Issues” workshop hosted by the Brocher Foundation in Geneva in Switzerland in December 2007 brought together humanities and life sciences researchers alike, some of whom directly engaged in policy making regulating the life sciences in Europe at the time. I believe that all of us who [26] had the honor to have been invited to present knew what we wished to discuss. However, I am certain that most of us failed to talk about it in ways that would have been understood by the majority of listeners and thus fostered a joint discussion. Most of the Q&A’s that followed presentations focused on clarifying medical procedures or terms used. My presentation at the Brocher Foundation focused on human vulnerability as a core condition to how we relate to each other and to medical research and practice. The paper also laid out the pedagogical responsibility when discussing medical consent forms with various (vulnerable) populations. At the time of this research, consent forms were oftentimes discussed with potential participants by social workers, thus framing the conversation to be pedagogical rather than medical. I remember feeling very humbled to be presenting at the prestigious foundation. And then, something very strange happened. Jan Helge Solbakk, who at the time held the position of Chief of Bioethics for the UNESCO in Paris, presented shortly after I spoke. His presentation focused on the failures of Informed Consent as a tool in biobanking. He then continued with reference to my presentation and stated: “Maybe vulnerability will be more important than Informed Consent?” (Solbakk 2007: presentation). For me, the concept of vulnerability when applied to Informed Consent procedures in biobanking again refers back to Korczak’s term “future people,” in so far as participants in biobanking projects are not a means to an end, here the end being the future success of research conducted using bodily substances they (the participants) provide. Solbakk’s acknowledgement marks the moment when I understood that my work on embodiment, Leib, and the human condition to be vulnerable, had the potential to make a valuable pedagogical contribution to the ethical, social, and political discussion of biomedical practice. There is no area of pedagogical practice where human vulnerability does not matter. Solbakk finished his presentation on Informed Consent acknowledging that biomedical research, including RGTs, is complicated by asking: “Is human kind not worth these complications?” (ibid).

In this sense, let’s get complicated – because we are worth it. Besides, because I am certain that the complex issues discussed in this study, and the vocabulary used, lend themselves to and are open to contributing themselves to the discussion of crucial contemporary pedagogical questions and concepts, such as, for example, arising in the field of subaltern pedagogy, as developed by School of Teacher Education & Leadership Assistant Professor Shireen Keyl at Utah State University in her article, “Subaltern Pedagogy, A Critical Theorizing of Pedagogical Practices for Marginalized Border-Crossers” (Keyl 2017). Her article underlines that vulnerabilities are established intersectionally, and that marginalizations, experienced by certain populations, communities, and individuals, cannot speak for marginalizations experienced by other populations, communities, or individuals. Yet, the analysis of such marginalizations can inform pedagogical discussions looking at the intersectionality of [27] marginalizations, as these materialize at borders, in medical laboratories and biomedical practices, in legal discussions, and so on.