In a highly medicalized world it is important for those of us who are intersex to exchange in personal narratives centered on our experiences living in our particular bodies beyond clinics, charts, test results, treatment plans, procedures, lists of symptoms, diagnostic nomenclature, and normalization. When we share stories and information with one another we can empower each other. Just the act of sharing stories in community allows us to learn from one another away from the constraints of doctors’ offices. It makes us feel less alone and deepens our sense of community. When medical professionals hear our stories it gives them a chance to improve the care they provide and see us more as human beings and not just patients or issues to be managed or fixed. That is why the autobiographical essays like the ones collected in Standing Tall with Turner Syndrome are so important for the Turners community.
The essays cover a wide range topics including sexuality, hormone replacement therapy, interactions with medical professionals, gender expression, relationships, family life, and more. Turners women and girls in particular are given opportunities to see themselves accurately portrayed in the stories the contributors share. The essayists themselves are of ages from older women to young adults and a few are even people of color. This helps to expand representation for the Turners community beyond the usual focus on white girls and hormonal treatments. However diverse representation in terms of gender identity and sexual orientation is limited with only a brief acknowledgement lesbian with Turner syndrome exist. Otherwise the assumption everyone with Turner syndrome is a feminine, heterosexual, female, and cisgender are left unchallenged. Unfortunately such a lack of LGBTQ+ is unfortunately quite common within the wider Turners community. Hopefully this will change as visibility increases for LGBTQ+ and Turners communities including those of us who live at the intersection of these experiences.
Readers who do not have Turner syndrome are given a window into what it is like to live with the condition and what it means on a personal as well as a medical level. The sections on the biology of Turner syndrome are straight forward, easy to understand, and effective for teaching the basics of the condition. It avoids the common pit falls sources on Turner syndrome fall into like just giving a long of symptoms or using confusing medical jargon. All of this makes it an excellent educational resource.
In the end I would recommend this book to anyone who wants to learn more about Turner syndrome, especially to those who are newly diagnosed and their families and friends. It is the kind of book I wish was in existence when I was diagnosed and I think it also would have been really helpful to my family during that difficult time.