Intersex 101
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INTERSEX 101 With Your Guide: Phoebe Hart Secretary, AISSGA (Androgen Insensitivity Syndrome Support Group, Australia) And all‐round awesome person! WHAT IS INTERSEX? • a range of biological traits or variations that lie between “male” and “female”. • chromosomes, genitals, and/or reproductive organs that are traditionally considered to be both “male” and “female,” neither, or atypical. • 1.7 – 2% occurrence in human births REFERENCE: Australians Born with Atypical Sex Characteristics: Statistics & stories from the first national Australian study of people with intersex variations 2015 (in press) ‐ Tiffany Jones, School of Education, University of New England (UNE), Morgan Carpenter, OII Australia, Bonnie Hart, Androgyn Insensitivity Syndrome Support Group Australia (AISSGA) & Gavi Ansara, National LGBTI Health Network XY CHROMOSOMES ..... Complete Androgen Insensitivity Syndrome (CAIS) ..... Partial Androgen Insensitivity Syndrome (PAIS) ..... 5‐alpha‐reductase Deficiency (5‐ARD) ..... Swyer Syndrome/ Mixed Gonadal Dysgenesis (MGD) ..... Leydig Cell Hypoplasia ..... Persistent Müllerian Duct Syndrome ..... Hypospadias, Epispadias, Aposthia, Micropenis, Buried Penis, Diphallia ..... Polyorchidism, Cryptorchidism XX CHROMOSOMES ..... de la Chapelle/XX Male Syndrome ..... MRKH/Vaginal (or Müllerian) agenesis ..... XX Gonadal Dysgenesis ..... Uterus Didelphys ..... Progestin Induced Virilization XX or XY CHROMOSOMES ...... Congenital Adrenal Hyperplasia (CAH) ..... Ovo‐testes (formerly called "true hermaphroditism") ..... Kallmann syndrome/Hypogonadotropic hypogonadism (HH) ..... Aphallia ..... Aromatase Deficiency ..... Cloacal Extrophy NEITHER XX or XY CHROMOSOMES ..... Klinefelter Syndrome, 48, XXYY Syndrome ..... Turner Syndrome (or Monosomy X) ..... XY/XO mosaics and xy‐Turner's Syndrome ..... Triple‐X Syndrome (also Tetrasomy X) ..... Jacobs/XYY Syndrome or spontaneously occurring... TERMINOLOGY •48 % Intersex •20 % Intersex Variation •18 % Intersex Condition •25 % Specific Diagnosis •17 % My chromosomes •7 % Difference of Sex Development •3 % Disorder of Sex Development (DSD) sex marker allocated at birth •52 % Female • 41% Male •2 % X •2 % unsure 3 % another option sex marker now •52 % Female •23 % Male •7 % X •6 % unsure 12 % another option 8 % Transgender SEXUAL ORIENTATION •48 % Heterosexual •22 % Bisexual •18 % Gay/Lesbian •15 % Queer •11 % Questioning •10 % Pansexual •10 % Asexual •10 % Prefer no label •4 % Another label ISSUES Health • Medical Pathologisation •Surgery –what : when • Maintenance ‐ HRT / bone density • Access to services Social •Stigma • Family duress •Isolation / secrecy / disclosure • Access to support •Intimacy MENTAL HEALTH •59 % rated present mental health as good or better • depression, anxiety & PTSD •42 % thoughts of self‐harm •26 % engaged in self‐harm •60 % suicidal ideation •19 % attempted suicide HUMAN RIGHTS • Bodily autonomy •Consent • Recognition • Marriage equality •Protection • Legislative • Policy INTERSEX PEOPLE IN SOCIETY • Families • Education • Employment •Sport • Media •Aged Care AND BEYOND… •“Nothing about us without us” •Growing public awareness • Peer support and advocacy •International networks •Growing legal protection •Sex Discrimination Act Amendment 2013 •X sex markers •Malta ‐ Gender Identity, Gender Expression and Sex Characteristic Act 2015 •UN attention THANK YOU! http://www.aissga.org.au/ I invite your questions .