For decades, intersex or DSD (Differences of Sex Development) has been invisible in society, partially because general policy focused on secrecy. Gradually, experience experts break this taboo and are more and more
open in their social environments. This article concentrates on the social perspective of lived experiences of experience experts. It is based on policy-focused research in Flanders and the Netherlands. More than 30 interviews and conversations have been held with adults and with parents of intersex children. Approaches to intersex/DSD vary. The human rights and medical perspective are dominant, which becomes clear
in the diverse ways experience experts label themselves and organize themselves. In both perspectives the issue of reducing stigma and stigmatisation is prominent. Stigma as a negative label or characteristic
dramatically impacts how experience experts perceive themselves, and wish to be or are perceived by others. Although the stigma, in principle, refers to the intersex or DSD characteristic, it is primarily the undesired
effect of ‘being different’ according to others, which causes the stigma to be experienced as stigmatizing. It is possible that the impact of stigma differs to the extent that intersex or DSD characteristics are visible
(e.g. physically, behaviorally) or invisible (e.g. infertility). Openness about intersex or DSD can offer support and recognition, but also a risk to experience stigmatization, because of other people’s ignorance or prejudice
based on stigma associated with intersex or DSD characteristics. Experience experts use visibility management, which concerns weighing advantages and disadvantages in terms of being visible as an intersex person or a person with a DSD. Diverse factors play a role in visibility management. In efforts to maximize the wellbeing of intersex people and people with DSDs, it is important that caregivers take into account not only the medical and psychosocial dimensions, but also the social perspective; and identify the needs in this area.