Living with intersex/DSD

Jatine Van Lisdonk, Rutgers, Utrecht.

• Foreword, Summary 1 Introduction 1.1 Intersex/dsd unknown among the general public 1.2 Intersex/dsd: an emancipation issue? 1.3 Design and implementation of exploratory study 1.4 Structure of this report 2 What is intersex/dsd? Types, terminology and prevalence 2.1 Types of intersex/dsd: a medical explanation 2.2 Sensitivities surrounding terminology: intersex and/or dsd 2.3 Definitions 2.4 Differences between intersex/dsd and transgender persons and sexual orientation 2.5 Prevalence of intersex/dsd. Notes 3 Personal experiences of intersex/dsd 3.1 The discovery and the message 3.2 The medical side: experience of treatments 3.3 Self-acceptance of a chronic condition and (sometimes) infertility 3.4 Self-image as a woman or man 3.5 Access to good information and support 3.6 Health and well-being Notes 4 The social environment: openness, treatment by others and participation 4.1 Lack of openness 4.2 Forming relationships and the desire for children 4.3 Social treatment: ignorance, embarrassment and lack of understanding, but little perceived discrimination 4.4 Participation in education, work and leisure activities 4.5 Importance of contact with others with intersex/dsd and organisation-building 5 Concluding discussion 5.1 Perceptions and visibility 5.2 Medical practice: need for more knowledge, sensitivity and views on sex 5.3 Gaps in knowledge regarding social situation 5.4 Pointers for policy development.