The voices of 13 people with intersex traits are shared in this symposium to shape dominant medical discourse about intersex bodies and experiences. Four commentaries on these narratives by experts from various disciplines are included in this issue, with each raising questions that hopefully enhance rather than regulate the voices of people with intersex traits.

Visual images are widely used in medical and patient education to enhance spoken or written explanations. This paper considers the role of such illustrations in shaping conceptions of the body; specifically, it addresses depictions of variant sexual anatomy and their part in the discursive production of intersex bodies. Visual language—even didactic, ‘factual’ visual language—carries latent as well as manifest content, and influences self-perceptions and social attitudes. In the case of illustrations about atypical sex development, where the need for non-stigmatising communication (...) is crucial, it is especially important to consider the implicit messages conveyed by imagery and compositional strategies. (shrink)

The medical management of DSD/ Intersex in early childhood has been criticized by patients' advocates as well as bioethicists from an ethical point of view. Some call for a moratorium of any feminizing or masculinizing operations before the age of consent except for medical emergencies. No exhaustive ethical guidelines have been published until now. In particular, the role of the parents as legal representatives of the child is controversial. In the article, we develop, discuss and present ethical principles and recommendations (...) for the medical management of intersex/DSD in children and adolescents. We specify three basic ethical principles that have to be respected and substantiate them. The article includes a critical discussion of the best interest of the child and of family privacy. The argumentation draws upon recommendations by the working group "Bioethics and Intersex" within the German Network DSD/Intersex, which are presented in detail. Unlike other recommendations with regard to intersex, these guidelines represent a comprehensive view of the perspectives of clinicians, patients and their families. Conclusion: The working group identified three leading ethical principles that apply to DSD management: (1) to foster the well-being of the child and the future adult, (2) to uphold the rights of children and adolescents to participate in and/or self-determine decisions that affect them now or later and (3) to respect the family and parent-child relationships. Nine recommendations for the management of DSD indicate how these ethical principles can spelled out and balanced against each other in the clinical setting. (shrink)

For this second edition, the editors have returned to Austin's original lecture notes, amending the printed text where it seemed necessary.

The term “normal” is culturally ubiquitous and conceptually vague. Interestingly, it appears to be a descriptive-normative-hybrid which, unnoticedly, bridges the gap between the descriptive and the normative. People’s beliefs about normality are descriptive and prescriptive and depend on both an average and an ideal. Besides, the term has generally garnered popularity in medicine. However, if medicine heavily relies on the normal, then it should point out how it relates to the concept of health or to statistics, and what, after all, (...) normal means. Most importantly, the normativity of the normal needs to be addressed. Since the apparently neutral label “normal” can exclude, stigmatize, and marginalize people who are defined in contrast to it as abnormal, health professionals should think twice before using the term with patients. The present critical perspective advocates against using the term “normal,” as long as no understanding of a person’s individual normality has been attained. It advocates for the right to autonomously determine one’s own normality. For health professionals I do not see worthwhile benefits of subscribing to the concept of “normality” and imposing it on their patients. But I do see many risks. (shrink)

What is considered normal determines clinical practice in medicine and has implications at an individual level, doctor-patient relationship and health care policies. With the increase in medical information and technical abilities it is urgent to have a clear concept of normality in medicine so that crucial discussions can be held with unequivocal terms.The different meanings for normality were analyzed throughout the literature and grouped according to their relevance in the academic community in models, namely the Biostatistical Theory (BST), Health, Ideal, (...) Process and Biological advantage. The BST is the most established naturalistic approach, however normal variability can arguably constitute a problem. Health is similar and raises the question of setting the boundaries of pathology. Normality as an Ideal is an useful tool but is naturally unrealistic. As a Process it is comprehensible but is hard to frame for practical purposes. If considered as a Biological Advantage, seems intuitive but abnormality should tend to disappear.After, three examples were presented to discuss these models. They were Anemia, Psychiatric diseases and Psychopathy. In the case of Anemia the BST was applied and the arbitrary boundaries but with social impact were exposed. Psychiatric diseases was discussed under the process of self-organization and non-suffering ideal. With Psychopathy the boundaries of biological advantage are questioned.This review appeals to the importance of redesigning of the concept of normality in medicine according to current times and stresses the importance of integrating concepts such as variability and autonomy. (shrink)

Despite an expansive literature on communication in medicine, the role of language is dealt with mostly indirectly. Recently, narrative medicine has emerged as a strategy to improve doctor-patient communication and integrate patient perspectives. However, even in this field which is predicated on language use, scholars have not specifically reflected on how language functions in medicine. In this theoretical paper, the authors consider how different models of language use, which have been proposed in the philosophical literature, might be applied to communication (...) in medicine. In particular, the authors contrast the traditional, indexical thesis of language with new models that focus on interpretation instead of standardization. The authors demonstrate how paying close attention to the role of language in medicine provides a philosophical foundation for supporting recent changes in doctor-patient communication. In particular, interpretive models are at the foundation of new approaches such as narrative medicine, that emphasize listening to patient stories, rather than merely collecting information. Ultimately, debates regarding the role of language which have largely resided in non-medical literatures, have important implications for describing communication in medicine. In particular, interpretive models of language use provide an important rationale for facilitating a more robust dialogue between doctors and patients. (shrink)

In this paper, I apply Michel Foucault’s analysis of normalization to the 2006 announcement by the US and European Endocrinological Societies that variations on the term “hermaphrodite” and “intersex” would be replaced by the term, “Disorders of Sex Development” or DSD. I argue that the change should be understood as normalizing in a positive sense; rather than fighting for the demedicalization of conditions that have significant consequences for individuals’ health, this change can promote the transformation of the conceptualization of intersex (...) conditions from “disorders like no other” to “disorders like many others.” Understood in these terms, I conclude, medical attention to those with atypical anatomies should be recast from a preoccupation with “normal appearance” to the concern with human flourishing that is the proper object of medical attention. (shrink)