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INTERSEX LIVES

      Presented By
  Veronica Drantz, PhD

      Prepared for
      H.E.R. Day
         at the
    Center on Halsted
     March 10, 2012
What’s the “I” in LGBTI?
   I = Intersex
    – I for Invisible
    – I for Isolation
   LGBTI
    – Much in common
    – All are victims of the “gender binary“

    Elizabeth Reis. Bodies in Doubt: An American History of Intersex. The Johns Hopkins University
        Press. (2009)
The Myth: “The Gender Binary”




   Gametes are binary (eggs or sperm)
   Organisms that make the gametes are not binary!
Intersex People



                       Curtis Hinkle - Founder
                  Organization Intersex International
Some 4% Of People Are Not
       Clearly Male Or Female
   Frequency depends on how you define
    intersex and what conditions are included
    under this umbrella term
   Most intersex conditions are not life-
    threatening and do not require treatment
   Some people are not aware that they are
    intersex
   Many are never diagnosed
   There are many different kinds of intersex
    people
Intersex People Are Not
     Standard Males Or Females
   Intersex people
    – Differ physically from the “standard” male or
      female
    – Difference is congenital, due to atypical sexual
      development
   These differences involve
    –   Genes/chromosomes
    –   Gonads
    –   Hormones
    –   Genitals
   May have features of both male and
    female at once or may have no clearly
    defined sexual features at all
Intersex People - Natural Variants
  Everyone, including intersex persons,
   are natural variations on the human
   theme
  All of us are unusual in some way; we
   all carry unusual genes
  Diversity in a population is an biological
   asset, not a liability
Sexual Development –
           What Do We Know?
   Sex has many levels in people
    – Genetic Sex – Chromosomes      (X & Y in mammals only)


    – Gonadal Sex – Ovaries/Testis    (primary sex characteristic)



    – Hormonal Sex –Testosterone/Estrogen
    – Somatic Sex – Body anatomy/physiology
    – Psychological Sex - Sexual identity
    – Sexual Attraction – Sexual orientation
“Organization – Activation” Mechanism
       of Sexual Development
      Organization - before birth
         – Two kinds of sexual programming of body
             Genetic: 46 XX vs. 46 XY

             Hormonal: androgen or its absence

      Activation – at puberty
         – By steroid hormones from gonads
  Milton Diamond. Clinical implications of the organizational and activational effects of hormones. HORMONES AND BEHAVIOR
        55:621–632 (2009)
Sexual Programming
                        by Sex Chromosomes
 Genes    on sex chromosomes are
     expressed in brain of embryo
     (before gonads develop so hormone influence is not a factor)
Laura L. Carruth, Ingrid Reisert & Arthur P. Arnold. Sex chromosome genes directly affect brain sexual differentiation NATURE NEUROSCIENCE 5,
      933 - 934 (2002)
Phoebe Dewing, Tao Shi, Steve Horvath, Eric Vilain Sexually dimorphic gene expression in mouse brain precedes gonadal Differentiation
      MOLECULAR BRAIN RESEARCH 118 (2003) http://www.shb-info.org/sitebuildercontent/sitebuilderfiles/4_vilain_et_al.pdf



•    Multiple genes
     determine gonad
     differentiation
       http://quizlet.com/3597081/x-and-y-chromosomes-flash-cards
Sexual Programming
              by Androgen
   Female body plan is “default” in mammals
    – No significant hormone secretion by ovaries in
      developing female
   Androgen (testosterone) acts during
    “critical periods” of development
    – Testosterone is secreted by testes of typical
      developing male
   Epigenetic effects of testosterone or its
    absence during these critical periods are
    lifelong and widespread in body
Sexual
Differentiation
       of
    Internal
   Genitalia
Figure 25-4 Embryonic
differentiation of male and
female internal genitalia
(genital ducts) from
wolffian (male) and
müllerian (female)
primordia.
Sexual
Differentiation of
External Genitalia




Figure 25-5 Differentiation of male
and female external genitalia from
indifferent primordial structures in the
embryo.
Male Is Altered Female !!!
 Mammalian body plan is inherently female
 Every individual’s body plan is a variation on
  the female theme
    – Default (female)
    – Fully altered (male)
    – Partly altered (intersex)
   Everyone falls on some point of the
    continuum from female (gynemorphic) to
    male (andromorphic)
Prader Scale:
    Five Degrees of Virilization –
Urogenital Sinus and External Genitalia




Hines M, Brook C., Conway, G.S. Androgen And Psychosexual Development Core Gender Identity, Sexual Orientation And
Recalled Childhood Gender Role Behavior In Women And Men With Congenital Adrenal Hyperplasia (CAH). J SEX RES, 41: 75-81
(2004)
4 Sexes!
    Four
     “transcriptional
     sexes” in PBMC
       –    XX/no T
       –    XY/T
       –    XX/T
       –    XY/no T
*PBMC = peripheral blood mononuclear cells

Holterhus P-M, Bebermeier J-H, Werner R, Demeter J,
      Richter-Unruh A, Cario G, Appari M, Siebert R, Riepe
      F, Brooks JD, Hiort O. Disorders of sex development
      expose transcriptional autonomy of genetic sex and
      androgen-programmed hormonal sex in human blood
      leukocytes BMC GENOMICS 10:292 (2009)
4 Sexes!
        157 genes
         expressed
         differently in
         males vs. females
            – Sex chromosome
              programming of
              11 genes
            – Androgen-
              dependent
              programming of
              146 genes (not
              affected by
              circulating
              hormones)
Holterhus P-M, Bebermeier J-H, Werner R, Demeter J, Richter-Unruh A, Cario G,
          Appari M, Siebert R, Riepe F, Brooks JD, Hiort O. Disorders of sex
          development expose transcriptional autonomy of genetic sex and
          androgen-programmed hormonal sex in human blood leukocytes BMC
          GENOMICS 10:292 (2009)
Sexual Identity & Orientation –
        Nature or Nurture?
   The genitalia are obviously organized before birth,
    and we obviously do not learn or choose our genetic
    sex, gonadal sex, hormonal sex, or somatic sex
   But what about sexual behavior? Sexual identity?
    Sexual orientation? Innate or learned/chosen?
   Is the brain, like the body, organized sexually before
    birth?
   Evidence for Organization-Activation Mechanism
    – David Reimer story
    – Intersex people (AIS, CAH, cloacal exstrophy)
    – Brain work (nonhuman mammals, humans)
John Money
            "Neutrality-at-Birth“
                  Theory
     “Sexual behavior and orientation as                                                                                                         Psychologist


      male or female does not have an
      innate, instinctive basis”
Money, J. Hermaphroditism, gender and precocity in hyperadrenocorticism: Psychologic findings. BULLETIN OF THE JOHNS HOPKINS HOSPITAL
     96:253-264 (1955)


        – Postulate 1: Individuals are psychosexually neutral
          at birth
        – Postulate 2: Healthy psychosexual development is
          intimately related to the appearance of the genitals
     No evidence to support this theory (serious
      flaws in Money’s statistical and research methods)
*Cappon D, Ezrin C, Lynes P. Psychosexual identification (psychogender) in the intersexed THE CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL 4:90-106 (1959)
Milton Diamond
    “Sexuality-at-Birth"
         Theory
   Prenatal genetic and hormonal            Biologist


    influences predispose at birth to a male or
    female sexual identity
   Inherent sexuality provides built-in "bias“ with
    which the individual interacts with environment;
    sexual behavior and thus gender role, are not
    neutral and without initial direction at birth
 Organization – Activation Mechanism
 Evolutionary view
1959 – Breakthrough at
          University of Kansas
   Phoenix CH, Goy RW, Gerall AA, Young WC.
    Organizing action of prenatally administered
    testosterone propionate on the tissues
    mediating mating behavior in the female guinea
    pig. ENDOCRINOLOGY 65:369-382 (1959)
   Milton Diamond
    – Felt that fellow scientists were too cautious failing to
      link their animal findings to human situation
    – Decided to write essay challenging psychosexual
      neutrality theory
Diamond Versus Money
•   Diamond challenges Money - 1965
    • Diamond, Milton. A critical evaluation of the ontogeny
      of human sexual behavior. QUARTERLY REVIEW OF
      BIOLOGY 40:147 – 175 (1965)
    • Over the years, animal work accumulated showing
      “determining influence” of prenatal hormones
•   Money responds to challenge - December 28,
    1972
    • Symposium of American Association for the
      Advancement of Science “Sex Role Learning in
      Childhood and Adolescence”
    • Man & Woman, Boy & Girl: the differentiation and
      dimorphism of gender identity from conception to
      maturity. Baltimore, MD: John Hopkins University
      Press, 1972. 311 p. (Depts Psychiatry and Pediatrics, John Hopkins Univ. Sch. Med., Baltimore, MD)
The David Reimer Story
 “Identical Twins Case”
   “Nature-Nurture Experiment”
    – Circumcision accident destroyed
      John’s penis; Dr. Money consulted
    – John is “assigned” as Joan
          Same nature: same genetics, womb
          Different nurturing: raised as different genders
   “Optimal Gender of Rearing” Model
    – Touted as a success by John Money, this “Nurture
      Over Nature” case report became the foundation
      of standard care for treatment of certain intersex
      conditions, micropenis, and accidental penile
      amputation in infancy
Colapinto, John. As Nature Made Him - The Boy Who
Was Raised As A Girl HarperCollins (2000)
Joan/Brenda Becomes John/David
          “Joan’s turning point occurred at the age
           of 14, when she, on her own initiative,
           began living as a boy, John. John recalls
           how soon thereafter he finally learned the
           truth, “In a tearful episode following
           John’s prodding, his father told him of the
           history of what had transpired as an infant
           and why. John recalls: ‘All of a sudden
           everything clicked. For the first time
           things made sense and I understood who
           and what I was.’”
Beh HG, Diamond M. An Emerging Ethical and Medical Dilemma: Should Physicians Perform Sex Assignment on
Infants with Ambiguous Genitalia? MICHIGAN JOURNAL OF GENDER & LAW 7: 1-63, 2000
Colapinto, John. As Nature Made Him -
The Boy Who Was Raised As A Girl
HarperCollins (2000)
David Reimer (1965-2004)




 John Money tells medical community that Joan/Brenda is a happy
  girl/woman and then claims to lose track of her
 Milton Diamond finds Joan/Brenda living as David!
 When David discovered his case was medically famous and that
  thousands of intersex babies had suffered his plight, he cooperated
  with Milton Diamond and “went public”
Milton Diamond, Ph.D. & H. Keith Sigmundson, M.D. Sex Reassignment at Birth: A Long Term Review and Clinical Implications. ARCHIVES OF PEDIATRIC &
       ADOLESCENT MEDICINE 151:298-304 (1997)



 Money’s                              view is now discredited!
Complete AIS & Gender Identity
     39 subjects:
     •   100% lived as women and believed that it was the best decision for them; however, this was
         not a simple solution for all
     •   “Acceptance of assignment does not mean that assignment has been correct. It just means that
         most are able to adapt and live with the handicap; however, they might have preferred other
         options”

published statements from ALIAS,                        Agree                                    Disagree
       an AIS newsletter.

“I don’t think I am any different in                     82%                                       18%
feeling than if I were born XX, feel
           very female.”


 “All my efforts over the years in                       10%                                       90%
presenting a female persona have
  left me completely exhausted. I
    might just as well have had a
mastectomy, cut my hair short and
 lived as a celibate man. It would
actually have been easier I think.”

I have to “work at being a woman”         56% (dressing in a feminine way                          44%
                                          or using cosmetics or hair styles in
                                               a way to signal “female”
                                          unambiguously, altering selection
                                                      of clothes;
                                          30% did above much of the time)
        Considered suicide                               62%                                       38%


        Attempted suicide                                23%                                       77%


Diamond, Milton and Watson, Linda Ann. “Androgen insensitivity syndrome and Klinefelter’s syndrome: sex and gender
considerations” Child Adolesc Psychiatric Clin N Am 13 (2004) 623—640
Partial AIS & Gender Identity
18 subjects:
•Often ambivalent about assigned gender
•67% believed that the gender in which they were raised was best for them, whereas the others voiced
reservations
• “Gender switch” occurred at mean age of 33, range 18-46)

                                                 PARTIAL AIS

                   8 raised as boys                                    4 live as women

                  10 raised as girls                                     2 live as men*

                Considered suicide                                                   61%

                 Attempted suicide                                                   17%

*Now angry about castration, vaginal reconstructions surgery, and somatic feminization by estrogen treatment since puberty
**Attempted before switching
Diamond, Milton and Watson, Linda Ann. “Androgen insensitivity syndrome and Klinefelter’s syndrome: sex and gender
considerations” Child Adolesc Psychiatric Clin N Am 13 (2004) 623—640
Sexual Identity - Cloacal Exstrophy
      Genetically and
       hormonally
       male-born
       children may
       identify as
       males despite
       being raised as
       females and
       undergoing
       feminizing
       genitoplasty at
       birth
      Kayla’s story
Reiner, William G. and Gearhart, John P. Discordant
        Sexual Identity in Some Genetic Males with
        Cloacal Exstrophy Assigned to Female Sex at
        Birth. THE NEW ENGLAND JOURNAL OF
        MEDICINE, 350:333-341 (2004)
The Sexual
       Brain
       Amygdala
          – Part of Limbic System
          – Genesis of emotions
               & emotional
               expression
       Hypothalamus
          – Homeostasis
          – Neuroendocrine Control
          – Instinctive Drives &
               Behavior
                     Hunger
                     Thirst
                     Sleep
                     Body Rhythms
                     Sex
Netter, Frank H. The CIBA COLLECTION OF MEDICAL
ILLUSTRATIONS. Vol I. Nervous System. Part I. Anatomy &
Physiology. New York: CIBA (1983)
Sexual Behavior Is Controlled by
Anterior Hypothalamus in Mammals




            Figure 25-28 Loci where implantations of estrogen in
               the hypothalamus affect ovarian weight and sexual
               behavior in rats, projected on a sagittal section of
               the hypothalamus. The implants that stimulate sex
               behavior are located in the suprachiasmatic area
               above the optic chiasm (blue area), whereas
               ovarian atrophy is produced by implants in the
               arcuate nucleus and surrounding ventral
               hypothalamus (red). MB, mamillary body
Bed Nucleus of the Stria Terminalis




Figure 2: Representative sections of the BSTc innervated by vasoactive intestinal polypeptide (VIP).
A: heterosexual man; B: heterosexual woman; C: homosexual man; D: male-to-female transsexual.
Bar=0.5 mm. LV: lateral ventricle. Note there are two parts of the BST in A and B: small sized
medial subdivision (BSTm), and large oval-sized central subdivision (BSTc)




Zhou, J.N. Hofman, M.A. Gooren, L.J. and Swaab, D.F.. A Sex Difference in the Human Brain and its Relation to Transsexuality. NATURE, 378: 68-70 (1995)
      Representative
                                                                                                  Somatostatin
       immunocytochemical
       stainings of the somatostatin
                                                                                                 Results Parallel
       neurons and fibers in the
       BSTc
                                                                                                  VIP Results
         –      (a) a reference man
         –      (b) reference woman
         –      (c) homosexual man
         –      (d) male-to-female transsexual
      Note the sex difference
       regardless of sexual
       orientation
      The male-to-female
       transsexual has a BSTc in the
       female range
Kruijver, Frank P. M., Zhou, Jiang-Ning, Pool, Chris W. Hofman, Michel A.,. Gooren, Louis J. G
        And Swaab, Dick F. Male-To-Female Transsexuals Have Female Neuron Numbers In A
        Limbic Nucleus. J CLIN ENDOCRINOL METAB, 85: 2034-2041 (2000)
Summary -
            Core
          Sexuality
     The scientific story explains everyone!
     “The preponderance of evidence seems to
      indicate that the theory of organization-
      activation for the development of sexual
      behavior is certain for non-human mammals
      and almost certain for humans“
Milton Diamond. Clinical implications of the organizational and activational effects of hormones. HORMONES AND BEHAVIOR 55:621–632 (2009)
LeVay, S. A Difference In Hypothalamic Structure Between Heterosexual And Homosexual Men. SCIENCE, 253: 1034–1037 (1991)
Zhou, J.N. Hofman, M.A. Gooren, L.J. and Swaab, D.F.. A Sex Difference in the Human Brain and its Relation to Transsexuality. NATURE, 378: 68-70
      (1995)
Kruijver, Frank P. M., Zhou, Jiang-Ning, Pool, Chris W. Hofman, Michel A.,. Gooren, Louis J. G And Swaab, Dick F. Male-To-Female Transsexuals Have
      Female Neuron Numbers In A Limbic Nucleus. J CLIN ENDOCRINOL METAB, 85: 2034-2041 (2000)
Garcia-Falgueras, Alicia, Swaab, Dick F. A Sex Difference In The Hypothalamic Uncinate Nucleus: Relationship To Gender Identity. BRAIN, (Nov 2,
      2008)
Organization-Activation Theory
      “The fetal brain develops during the
        intrauterine period in the male direction
        through a direct action of testosterone on
        the developing nerve cells, or in the
        female direction through the absence of
        this hormone surge. In this way, our
        gender identity (the conviction of
        belonging to the male or female gender)
        and sexual orientation are programmed or
        organized into our brain structures when
        we are still in the womb”
Garcia-Falgueras A, Swaab DF. Sexual hormones and the brain: an essential alliance for sexual identity and sexual orientation PEDIATRIC
NEUROENDOCRINOLOGY 17: 22-35 (2010)
Critical Periods of Genitalia
        and Brain Are Different
     “However, since sexual differentiation of the
      genitals takes place in the first two months of
      pregnancy and sexual differentiation of the brain
      starts in the second half of pregnancy, these
      two processes can be influenced independently,
      which may result in extreme cases in
      transsexuality.”
     “This also means that in the event of ambiguous
      sex at birth, the degree of masculinization of the
      genitals may not reflect the degree of
      masculinization of the brain.”
Garcia-Falgueras A, Swaab DF. Sexual hormones and the brain: an essential alliance for sexual identity and sexual orientation PEDIATRIC
      NEUROENDOCRINOLOGY 17: 22-35 (2010)
Core Sexuality:
                  Nature - Not Nurture!
     “There is no indication that social
      environment after birth has an effect
      on gender identity or sexual
      orientation”
Garcia-Falgueras A, Swaab DF. Sexual hormones and the brain: an essential alliance for sexual identity and sexual orientation PEDIATRIC
      NEUROENDOCRINOLOGY 17: 22-35 (2010)
We Don’t Learn Our Sexuality.
      We Discover It!


     Sexual Identity,
    Sexual Orientation,
   and Sexual Anatomy
Can Be In Any Combination.
Three       Somatic Morphology (X axis)
Dimensions of  Sexual Identity (Y axis)
Core Sexuality  Sexual Orientation (Z axis)

                                 Gynecentric



                                                  Androphilic




      Gynemorphic                                               Andromorphic




                                                Everyone occupies a
                    Gynephilic                  point in this three-
                                                dimensional space!
                                 Androcentric
Sex ≠ Gender
 Sex is biological
 Gender is cultural
 Gender “traits” differ
  from culture to culture
  and from time to time            Castor Semenya
                            Controversy over whether this
                            South African eighteen-year old
                            should be allowed to compete
                            as a woman continues
The “Gender Binary”
   We live in a “binary gendered” culture with two
    genders only
    – Woman
    – Man




   Many cultures recognize more than two genders
Disordered or Just Different?
 Gender binary has permeated medicine
 The medical profession has
  pathologized and stigmatized gender-
  variant peoples
    – Lesbian, gay, bisexual people
    – Transsexual people
    – Intersex people
Medical Profession’s Treatment of LGBT People
1952 (DSM-I)                                              Sociopathic Personality Disorders

1968 (DSM-II)                                             Sexual Deviation

1970                                                      Gay rights activists storm APA annual convention


1972                                                      APA annual meeting –first-ever panel of non-
                                                          patient homosexuals” and Dr. Anonymous


1973 (DSM-II Revision)                                    Deletion of Homosexuality
                                                          Substitution of Sexual Orientation Disturbance
                                                          (Homosexuality is not illness but supposedly discomfort with being persecuted as a homosexual is
                                                          an illness)


1980 (DSM-III)                                            Gender Identity Disorder (GID)
                                                          Ego-dystonic Homosexuality (formerly SOD)


1987 (DSM-III Revision)                                   Homosexuality omitted entirely
                                                          (Ego-dystonic homosexuality/SOD removed. It’s normal to not want to be persecuted & empirical
                                                          data to support diagnosis is lacking))→




2000 (APA Position Statement)                             Ethical psychiatrists should stop conversion or
                                                          “reparative therapies”
 Homosexuality was removed from the list of mental disorders by the World Health Organisation in 1990
Medical Quackery Continues
 Genital normalization surgeries on
  newborns continue!
 DSD = Disorders of Sexual Development
 OII objects to “disorder” terminology
http://www.gopetition.com/petitions/solidarity-with-the-intersex-community.html


      Milton Diamond recommends
       “Differences” or “Variations” of Sex
       Development
http://adc.bmj.com/content/91/7/554/reply#archdischild_el_2460?sid=437e97e7-049d-42c8-b60f-6d8d02dd31c1
http://adc.bmjjournals.com/cgi/eletters/91/7/554
Intersex Problems
                                      Are Socio-cultural
   “The basic problems faced by the
    intersexed are socio-cultural in nature
    and not medical and are a result of the
    dogmatic fundamentalism inherent in
    the current binary construct of sex and
    gender”
   “Some intersexed individuals are
    subjected to genital mutilation in
    childhood as a result of this
    totalitarian, sexist oppression”                                                   Curtis Hinkle - Founder
                                                                                  Organization Intersex International
http://www.gopetition.com/petitions/solidarity-with-the-intersex-community.html
Different but Not Disordered
   “Around the world intersex individuals are being
    subjected to inhumane and degrading altering
    surgical and hormonal procedures, without
    consent of the intersex person, at the discretion
    of doctors and outside legal regulation.
    This is done to “normalize” genitals and bodies in
    order to fit intersex people within the sex binary
    of men and women.
    Pathologization of intersex individuals results in
    gross human rights violations and abuse of
    bodily integrity
    and personal dignity.”
    1st International Intersex Forum, Brussels, Sept. 3-5, 2011
Phall-O-Meter




Sharon E. Preves. INTERSEX and IDENTITY The Contested Self Rutgers University Press (2003)




        Whatever happened to “informed consent?”
        Whatever happened to “first, do no harm?”
Genital “Normalization” Surgery - Dismal Outcomes
         23% of participants (46XY, Quigley grade 2-4, average 3.5, roughly half were assigned/raised as
          boys, half as girls) were dissatisfied with sex of rearing

            – Indicating “general predictions cannot guarantee future
              gender development for any single case”
            – This figure could be as high as 44%
              (if all non-participating patients were also dissatisfied)
         Majority (62% men, 67% women) sought counseling
          concerning condition
         Mean surgeries: men 5.8; women 2.1
         Half were dissatisfied with body image
         Two-thirds were dissatisfied to some degree with
          sexual function
         Researchers never asked: What if we did nothing?
Migeon; CJ, Wisniewski, AB, Gearhart JP, Meyer-Bahlburg, HFL, Rock, JA, Brown, TR, Casella, SJ, Maret A, Ngai KM, Money J, Berkovitz GD. Ambiguous Genitalia With
Perineoscrotal Hypospadias in 46,XY Individuals: Long-Term Medical, Surgical, and Psychosexual Outcome PEDIATRICS 110:10p (2002)
NEW STANDARDS OF CARE                                                 American Academy                    British Association Pediatric
             FOR                                                            Pediatricians                               Surgeons
      INTERSEX PATIENTS                                                      year 2000                                  year 2001
Diamond, M. Sex, gender, and identity over the years: a changing
perspective CHILD AND ADOLESCENT PSYCHIATRIC CLINICS
OF NORTH AMERICA 13:591-607 (2004)                                 No surgical moratorium
  #1. General moratorium on sex                                    (In1999, AAP decided that surgical
                                                                   moratorium was “unrealistic” because it   No surgical moratorium
  assignment cosmetic surgery                                      was hypothesized that parents would not
                                                                   accept it)


  #2. Moratorium should not be                                     Recognized need for more                  Recognized need for more
  lifted unless and until studies                                  research and greater candor               research and greater candor
  show outcomes are positive                                       and honesty                               and honesty

  #3. Efforts should be made to                                    No call back to families or               No call back to families or
  undo effects of past physician                                   individuals that had previous             individuals that had previous
  deception and secrecy                                            treatment                                 treatment
                                                                                                             Informed consent includes
  Response to intersex birth                                       “Social emergency”                        “possibility of non-operative
                                                                                                             management”
                                                                   All virilized females (CAH or
                                                                                                             Gender assignment on
                                                                   maternal androgen) should be
  Gender assignment                                                                                          individual basis; may include
                                                                   girls (because of retained
                                                                                                             cultural considerations
                                                                   fertility)
                                                                   Infants raised as girls “will             “There is a strong case for no
  Clitoral surgery                                                 usually require clitoral                  clitoral surgery in lesser
                                                                   reduction”                                degrees of clitoromegaly”
                                                                   PAIS infants “in whom a very
                                                                   small phallus mandates a                  The risk of malignant testicular
  Penile surgery
                                                                   female sex of rearing” should             changes in AIS is small
                                                                   have testes removed
Pediatric Policy Is Reprehensible
         2006 Consensus Statement - chose term
          “Disorders of Sexual Development”
             – Dismiss “sexual identity” issue
                 “Structure of the brain is not currently useful for gender

                  assignment”
                 Factors they say influence their decision on gender

                  assignment
                                –    Diagnosis
                                –    Genital appearance
                                –    Surgical options
                                –    Need for lifelong replacement therapy
                                –    Potential for fertility
                                –    Views of family
                                –    Circumstances relating to cultural practices
Collaboration with participants in International Consensus Conference on Intersex organized by Lawson Pediatric Endocrine Society and European Society for Paediatric Endocrinology
Lee PA, Houk CP, Ahmed SF, Hughes IA. Consensus statement on management of intersex disorders PEDIATRICS 118:488-500 (2006)
Pediatric Policy Must Change
      Pediatricians use parental distress & prejudice to
       justify damaging surgery
Lee PA, Houk CP, Ahmed SF, Hughes IA. Consensus statement on management of intersex disorders PEDIATRICS 118:488-500 (2006)


      Clitoral reduction is “standard clinical procedure”
       (Dr. Dix P. Poppas, Panel at Weill Cornell Medical College)
http://www.cornellsun.com/section/news/content/2010/10/05/weill-medical-college-
        says-poppas%E2%80%99-surgical-procedure-standard


      Pregnant women treated with dexamethasone to
       prevent “behavioral masculinization” (same-sex
       attraction and tom-boy behavior) in CAH girls
http://www.starobserver.com.au/news/2010/07/15/opposition-to-genital-drugs/27947
Meyer-Bahlburg HF, Dolezal C, Baker SE, New MI. “Sexual Orientation in Women with Classical or Non-Classical Congenital Adrenal Hyperplasia as a Function of
        Degree of Prenatal Androgen Excess” ARCHIVES OF SEXUAL BEHAVIOR 1: 85-99 (2008),


      Let’s follow Columbia’s example
Diamond, M. Sex, gender, and identity over the years: a changing perspective CHILD AND ADOLESCENT PSYCHIATRIC CLINICS OF NORTH AMERICA 13:591-607 (2004)


      Europe has ethical principles for intersex treatment
Wiesemann, C., Ude-Koeller, S., Sinnecker, G. H. G., & Thyen, U. Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex
      in children and adolescents EUR J PEDIATR 169:671–679 (2010)
Poor Medical Treatment
                            of Intersex People
       Over 50% are
        misdiagnosed!
Minto CL, Crouch NS, Conway GS, Creighton SM. XY females: revisiting the diagnosis BJOG:
        an International Journal of Obstetrics and Gynaecology 112:1407–1410 (2005)



       Intersex people have
        their own physiology
        and health concerns
        that are not being
        addressed by
        physicians
Holterhus P-M, Bebermeier J-H, Werner R, Demeter J, Richter-Unruh A, Cario G, Appari M,
        Siebert R, Riepe F, Brooks JD, Hiort O. Disorders of sex development expose
        transcriptional autonomy of genetic sex and androgen-programmed hormonal sex in
        human blood leukocytes BMC GENOMICS 10:292 (2009)
Intersex People Now Also Crazy!
 Special subtype of gender incongruence in
  DSD is recommended by Zucker’s
  committee for the DSM-V!
 OII responds: “We see no need to further
  medicalise and stigmatize intersex people
  by referring to them as necessarily
  disordered (DSD) and where mistakes in
  assignment have been made, we see no
  value in medicalising and stigmatizing them
  further by applying another form of disorder
  called ‘gender incongruence’”
http://www.intersxualite.org/DSM5.html
Germany Is Leading The Way
    To Ethical Medical Treatment Of
            Intersex People
     Historic public consultation and dialog on intersex
        –    Intersex people in Germany were invited to participate and observe proceedings in an
             historic public consultation and dialog “on the situation of people with intersexuality
             [sic] in Germany”. The event has been organized by Deutscher Ethikrat - The German
             Ethics Council – and its participants include ‘experts’ in intersex, medical people,
             lawyers, parents of intersex people and some intersex people themselves. June 6th,
             2011
        http://oiiaustralia.com/13790/intersex-people-germany-experts-deutscher-ethikrat-consultatio/

     Ethical principles and recommendations for the
      medical management of differences of sex
      development (DSD)/intersex in children and
      adolescents
        – “…the psychological and social support of the child and its parents is to be
          ranked higher than the creation of biological normalcy.”
        – “…Whenever prognostically uncertain interventions can be delayed until the
          child is old enough to make decision for themselves, this option should be
          presented to parents as the preference of choice.”
Wiesemann C, Ude-Koeller S, Sinnecker GHG, Thyen U. Ethical principles and recommendations for the medical management of differences of sex
     development (DSD)/intersex in children and adolescents EUR J PEDIATR 169:671-679 (2010) DOI 10.1007/s00431-009-1086-x
Common Concerns - LGBT and I
   Not “Adams” or “Eves.” Do not fit the “gender
    binary”
   Stigmatized as “disordered” (rather than “different”)
   Cruel and unnecessary medical “treatments” – based on
    belief in “gender binary” and that sexual behavior is
    learned
   Real medical needs not met by medical profession
   “In the closet” (secrecy & shame)
   Must “come out” and find each other
   Need to politically organize to obtain their human rights
   Civil rights issues based on gender expression
   Many intersex people share “sex reassignment” issues
    with trans people
   Transsexuality is a subtype of (brain) intersex
Discrimination Against Intersex
People Is a Socio-cultural Disorder
  Intersex people are natural variations
  Intersex people are different, not
   disordered
  The suffering of intersex people is not
   intrinsic to their condition; rather it is
   imposed by the binary-gendered society/
   culture
Intersex People Forsaken by
        Religion and Medicine
 Organized religion and the medical
  profession have been part of the socio-
  cultural problem and continue to be a
  problem
 The scientific message that “core
  sexuality is innate” needs to reach the
  religious communities, medical
  community, educators, and parents
Human Rights Issue:
        To Be Who We Are
   Respect diversity!
   People should be able to express
    themselves wherever they feel
    comfortable on the feminine-masculine
    continuum without having rights taken
    away or medical alterations forced upon
    them to maintain those rights
   All of us, not just the Adams and the
    Eves, have the birthright to be who we
    naturally and innately are
Basic Human Right:
To Be Who We Are!

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INTERSEX LIVES

  • 1. INTERSEX LIVES Presented By Veronica Drantz, PhD Prepared for H.E.R. Day at the Center on Halsted March 10, 2012
  • 2. What’s the “I” in LGBTI?  I = Intersex – I for Invisible – I for Isolation  LGBTI – Much in common – All are victims of the “gender binary“ Elizabeth Reis. Bodies in Doubt: An American History of Intersex. The Johns Hopkins University Press. (2009)
  • 3. The Myth: “The Gender Binary”  Gametes are binary (eggs or sperm)  Organisms that make the gametes are not binary!
  • 4. Intersex People Curtis Hinkle - Founder Organization Intersex International
  • 5. Some 4% Of People Are Not Clearly Male Or Female  Frequency depends on how you define intersex and what conditions are included under this umbrella term  Most intersex conditions are not life- threatening and do not require treatment  Some people are not aware that they are intersex  Many are never diagnosed  There are many different kinds of intersex people
  • 6. Intersex People Are Not Standard Males Or Females  Intersex people – Differ physically from the “standard” male or female – Difference is congenital, due to atypical sexual development  These differences involve – Genes/chromosomes – Gonads – Hormones – Genitals  May have features of both male and female at once or may have no clearly defined sexual features at all
  • 7. Intersex People - Natural Variants  Everyone, including intersex persons, are natural variations on the human theme  All of us are unusual in some way; we all carry unusual genes  Diversity in a population is an biological asset, not a liability
  • 8. Sexual Development – What Do We Know?  Sex has many levels in people – Genetic Sex – Chromosomes (X & Y in mammals only) – Gonadal Sex – Ovaries/Testis (primary sex characteristic) – Hormonal Sex –Testosterone/Estrogen – Somatic Sex – Body anatomy/physiology – Psychological Sex - Sexual identity – Sexual Attraction – Sexual orientation
  • 9. “Organization – Activation” Mechanism of Sexual Development  Organization - before birth – Two kinds of sexual programming of body  Genetic: 46 XX vs. 46 XY  Hormonal: androgen or its absence  Activation – at puberty – By steroid hormones from gonads Milton Diamond. Clinical implications of the organizational and activational effects of hormones. HORMONES AND BEHAVIOR 55:621–632 (2009)
  • 10. Sexual Programming by Sex Chromosomes  Genes on sex chromosomes are expressed in brain of embryo (before gonads develop so hormone influence is not a factor) Laura L. Carruth, Ingrid Reisert & Arthur P. Arnold. Sex chromosome genes directly affect brain sexual differentiation NATURE NEUROSCIENCE 5, 933 - 934 (2002) Phoebe Dewing, Tao Shi, Steve Horvath, Eric Vilain Sexually dimorphic gene expression in mouse brain precedes gonadal Differentiation MOLECULAR BRAIN RESEARCH 118 (2003) http://www.shb-info.org/sitebuildercontent/sitebuilderfiles/4_vilain_et_al.pdf • Multiple genes determine gonad differentiation http://quizlet.com/3597081/x-and-y-chromosomes-flash-cards
  • 11. Sexual Programming by Androgen  Female body plan is “default” in mammals – No significant hormone secretion by ovaries in developing female  Androgen (testosterone) acts during “critical periods” of development – Testosterone is secreted by testes of typical developing male  Epigenetic effects of testosterone or its absence during these critical periods are lifelong and widespread in body
  • 12. Sexual Differentiation of Internal Genitalia Figure 25-4 Embryonic differentiation of male and female internal genitalia (genital ducts) from wolffian (male) and müllerian (female) primordia.
  • 13. Sexual Differentiation of External Genitalia Figure 25-5 Differentiation of male and female external genitalia from indifferent primordial structures in the embryo.
  • 14. Male Is Altered Female !!!  Mammalian body plan is inherently female  Every individual’s body plan is a variation on the female theme – Default (female) – Fully altered (male) – Partly altered (intersex)  Everyone falls on some point of the continuum from female (gynemorphic) to male (andromorphic)
  • 15. Prader Scale: Five Degrees of Virilization – Urogenital Sinus and External Genitalia Hines M, Brook C., Conway, G.S. Androgen And Psychosexual Development Core Gender Identity, Sexual Orientation And Recalled Childhood Gender Role Behavior In Women And Men With Congenital Adrenal Hyperplasia (CAH). J SEX RES, 41: 75-81 (2004)
  • 16. 4 Sexes!  Four “transcriptional sexes” in PBMC – XX/no T – XY/T – XX/T – XY/no T *PBMC = peripheral blood mononuclear cells Holterhus P-M, Bebermeier J-H, Werner R, Demeter J, Richter-Unruh A, Cario G, Appari M, Siebert R, Riepe F, Brooks JD, Hiort O. Disorders of sex development expose transcriptional autonomy of genetic sex and androgen-programmed hormonal sex in human blood leukocytes BMC GENOMICS 10:292 (2009)
  • 17. 4 Sexes!  157 genes expressed differently in males vs. females – Sex chromosome programming of 11 genes – Androgen- dependent programming of 146 genes (not affected by circulating hormones) Holterhus P-M, Bebermeier J-H, Werner R, Demeter J, Richter-Unruh A, Cario G, Appari M, Siebert R, Riepe F, Brooks JD, Hiort O. Disorders of sex development expose transcriptional autonomy of genetic sex and androgen-programmed hormonal sex in human blood leukocytes BMC GENOMICS 10:292 (2009)
  • 18. Sexual Identity & Orientation – Nature or Nurture?  The genitalia are obviously organized before birth, and we obviously do not learn or choose our genetic sex, gonadal sex, hormonal sex, or somatic sex  But what about sexual behavior? Sexual identity? Sexual orientation? Innate or learned/chosen?  Is the brain, like the body, organized sexually before birth?  Evidence for Organization-Activation Mechanism – David Reimer story – Intersex people (AIS, CAH, cloacal exstrophy) – Brain work (nonhuman mammals, humans)
  • 19. John Money "Neutrality-at-Birth“ Theory  “Sexual behavior and orientation as Psychologist male or female does not have an innate, instinctive basis” Money, J. Hermaphroditism, gender and precocity in hyperadrenocorticism: Psychologic findings. BULLETIN OF THE JOHNS HOPKINS HOSPITAL 96:253-264 (1955) – Postulate 1: Individuals are psychosexually neutral at birth – Postulate 2: Healthy psychosexual development is intimately related to the appearance of the genitals  No evidence to support this theory (serious flaws in Money’s statistical and research methods) *Cappon D, Ezrin C, Lynes P. Psychosexual identification (psychogender) in the intersexed THE CANADIAN PSYCHIATRIC ASSOCIATION JOURNAL 4:90-106 (1959)
  • 20. Milton Diamond “Sexuality-at-Birth" Theory  Prenatal genetic and hormonal Biologist influences predispose at birth to a male or female sexual identity  Inherent sexuality provides built-in "bias“ with which the individual interacts with environment; sexual behavior and thus gender role, are not neutral and without initial direction at birth  Organization – Activation Mechanism  Evolutionary view
  • 21. 1959 – Breakthrough at University of Kansas  Phoenix CH, Goy RW, Gerall AA, Young WC. Organizing action of prenatally administered testosterone propionate on the tissues mediating mating behavior in the female guinea pig. ENDOCRINOLOGY 65:369-382 (1959)  Milton Diamond – Felt that fellow scientists were too cautious failing to link their animal findings to human situation – Decided to write essay challenging psychosexual neutrality theory
  • 22. Diamond Versus Money • Diamond challenges Money - 1965 • Diamond, Milton. A critical evaluation of the ontogeny of human sexual behavior. QUARTERLY REVIEW OF BIOLOGY 40:147 – 175 (1965) • Over the years, animal work accumulated showing “determining influence” of prenatal hormones • Money responds to challenge - December 28, 1972 • Symposium of American Association for the Advancement of Science “Sex Role Learning in Childhood and Adolescence” • Man & Woman, Boy & Girl: the differentiation and dimorphism of gender identity from conception to maturity. Baltimore, MD: John Hopkins University Press, 1972. 311 p. (Depts Psychiatry and Pediatrics, John Hopkins Univ. Sch. Med., Baltimore, MD)
  • 23. The David Reimer Story “Identical Twins Case”  “Nature-Nurture Experiment” – Circumcision accident destroyed John’s penis; Dr. Money consulted – John is “assigned” as Joan  Same nature: same genetics, womb  Different nurturing: raised as different genders  “Optimal Gender of Rearing” Model – Touted as a success by John Money, this “Nurture Over Nature” case report became the foundation of standard care for treatment of certain intersex conditions, micropenis, and accidental penile amputation in infancy
  • 24. Colapinto, John. As Nature Made Him - The Boy Who Was Raised As A Girl HarperCollins (2000)
  • 25. Joan/Brenda Becomes John/David  “Joan’s turning point occurred at the age of 14, when she, on her own initiative, began living as a boy, John. John recalls how soon thereafter he finally learned the truth, “In a tearful episode following John’s prodding, his father told him of the history of what had transpired as an infant and why. John recalls: ‘All of a sudden everything clicked. For the first time things made sense and I understood who and what I was.’” Beh HG, Diamond M. An Emerging Ethical and Medical Dilemma: Should Physicians Perform Sex Assignment on Infants with Ambiguous Genitalia? MICHIGAN JOURNAL OF GENDER & LAW 7: 1-63, 2000
  • 26. Colapinto, John. As Nature Made Him - The Boy Who Was Raised As A Girl HarperCollins (2000)
  • 27. David Reimer (1965-2004)  John Money tells medical community that Joan/Brenda is a happy girl/woman and then claims to lose track of her  Milton Diamond finds Joan/Brenda living as David!  When David discovered his case was medically famous and that thousands of intersex babies had suffered his plight, he cooperated with Milton Diamond and “went public” Milton Diamond, Ph.D. & H. Keith Sigmundson, M.D. Sex Reassignment at Birth: A Long Term Review and Clinical Implications. ARCHIVES OF PEDIATRIC & ADOLESCENT MEDICINE 151:298-304 (1997)  Money’s view is now discredited!
  • 28. Complete AIS & Gender Identity 39 subjects: • 100% lived as women and believed that it was the best decision for them; however, this was not a simple solution for all • “Acceptance of assignment does not mean that assignment has been correct. It just means that most are able to adapt and live with the handicap; however, they might have preferred other options” published statements from ALIAS, Agree Disagree an AIS newsletter. “I don’t think I am any different in 82% 18% feeling than if I were born XX, feel very female.” “All my efforts over the years in 10% 90% presenting a female persona have left me completely exhausted. I might just as well have had a mastectomy, cut my hair short and lived as a celibate man. It would actually have been easier I think.” I have to “work at being a woman” 56% (dressing in a feminine way 44% or using cosmetics or hair styles in a way to signal “female” unambiguously, altering selection of clothes; 30% did above much of the time) Considered suicide 62% 38% Attempted suicide 23% 77% Diamond, Milton and Watson, Linda Ann. “Androgen insensitivity syndrome and Klinefelter’s syndrome: sex and gender considerations” Child Adolesc Psychiatric Clin N Am 13 (2004) 623—640
  • 29. Partial AIS & Gender Identity 18 subjects: •Often ambivalent about assigned gender •67% believed that the gender in which they were raised was best for them, whereas the others voiced reservations • “Gender switch” occurred at mean age of 33, range 18-46) PARTIAL AIS 8 raised as boys 4 live as women 10 raised as girls 2 live as men* Considered suicide 61% Attempted suicide 17% *Now angry about castration, vaginal reconstructions surgery, and somatic feminization by estrogen treatment since puberty **Attempted before switching Diamond, Milton and Watson, Linda Ann. “Androgen insensitivity syndrome and Klinefelter’s syndrome: sex and gender considerations” Child Adolesc Psychiatric Clin N Am 13 (2004) 623—640
  • 30. Sexual Identity - Cloacal Exstrophy  Genetically and hormonally male-born children may identify as males despite being raised as females and undergoing feminizing genitoplasty at birth  Kayla’s story Reiner, William G. and Gearhart, John P. Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth. THE NEW ENGLAND JOURNAL OF MEDICINE, 350:333-341 (2004)
  • 31. The Sexual Brain  Amygdala – Part of Limbic System – Genesis of emotions & emotional expression  Hypothalamus – Homeostasis – Neuroendocrine Control – Instinctive Drives & Behavior  Hunger  Thirst  Sleep  Body Rhythms  Sex Netter, Frank H. The CIBA COLLECTION OF MEDICAL ILLUSTRATIONS. Vol I. Nervous System. Part I. Anatomy & Physiology. New York: CIBA (1983)
  • 32. Sexual Behavior Is Controlled by Anterior Hypothalamus in Mammals Figure 25-28 Loci where implantations of estrogen in the hypothalamus affect ovarian weight and sexual behavior in rats, projected on a sagittal section of the hypothalamus. The implants that stimulate sex behavior are located in the suprachiasmatic area above the optic chiasm (blue area), whereas ovarian atrophy is produced by implants in the arcuate nucleus and surrounding ventral hypothalamus (red). MB, mamillary body
  • 33. Bed Nucleus of the Stria Terminalis Figure 2: Representative sections of the BSTc innervated by vasoactive intestinal polypeptide (VIP). A: heterosexual man; B: heterosexual woman; C: homosexual man; D: male-to-female transsexual. Bar=0.5 mm. LV: lateral ventricle. Note there are two parts of the BST in A and B: small sized medial subdivision (BSTm), and large oval-sized central subdivision (BSTc) Zhou, J.N. Hofman, M.A. Gooren, L.J. and Swaab, D.F.. A Sex Difference in the Human Brain and its Relation to Transsexuality. NATURE, 378: 68-70 (1995)
  • 34. Representative Somatostatin immunocytochemical stainings of the somatostatin Results Parallel neurons and fibers in the BSTc VIP Results – (a) a reference man – (b) reference woman – (c) homosexual man – (d) male-to-female transsexual  Note the sex difference regardless of sexual orientation  The male-to-female transsexual has a BSTc in the female range Kruijver, Frank P. M., Zhou, Jiang-Ning, Pool, Chris W. Hofman, Michel A.,. Gooren, Louis J. G And Swaab, Dick F. Male-To-Female Transsexuals Have Female Neuron Numbers In A Limbic Nucleus. J CLIN ENDOCRINOL METAB, 85: 2034-2041 (2000)
  • 35. Summary - Core Sexuality  The scientific story explains everyone!  “The preponderance of evidence seems to indicate that the theory of organization- activation for the development of sexual behavior is certain for non-human mammals and almost certain for humans“ Milton Diamond. Clinical implications of the organizational and activational effects of hormones. HORMONES AND BEHAVIOR 55:621–632 (2009) LeVay, S. A Difference In Hypothalamic Structure Between Heterosexual And Homosexual Men. SCIENCE, 253: 1034–1037 (1991) Zhou, J.N. Hofman, M.A. Gooren, L.J. and Swaab, D.F.. A Sex Difference in the Human Brain and its Relation to Transsexuality. NATURE, 378: 68-70 (1995) Kruijver, Frank P. M., Zhou, Jiang-Ning, Pool, Chris W. Hofman, Michel A.,. Gooren, Louis J. G And Swaab, Dick F. Male-To-Female Transsexuals Have Female Neuron Numbers In A Limbic Nucleus. J CLIN ENDOCRINOL METAB, 85: 2034-2041 (2000) Garcia-Falgueras, Alicia, Swaab, Dick F. A Sex Difference In The Hypothalamic Uncinate Nucleus: Relationship To Gender Identity. BRAIN, (Nov 2, 2008)
  • 36. Organization-Activation Theory “The fetal brain develops during the intrauterine period in the male direction through a direct action of testosterone on the developing nerve cells, or in the female direction through the absence of this hormone surge. In this way, our gender identity (the conviction of belonging to the male or female gender) and sexual orientation are programmed or organized into our brain structures when we are still in the womb” Garcia-Falgueras A, Swaab DF. Sexual hormones and the brain: an essential alliance for sexual identity and sexual orientation PEDIATRIC NEUROENDOCRINOLOGY 17: 22-35 (2010)
  • 37. Critical Periods of Genitalia and Brain Are Different  “However, since sexual differentiation of the genitals takes place in the first two months of pregnancy and sexual differentiation of the brain starts in the second half of pregnancy, these two processes can be influenced independently, which may result in extreme cases in transsexuality.”  “This also means that in the event of ambiguous sex at birth, the degree of masculinization of the genitals may not reflect the degree of masculinization of the brain.” Garcia-Falgueras A, Swaab DF. Sexual hormones and the brain: an essential alliance for sexual identity and sexual orientation PEDIATRIC NEUROENDOCRINOLOGY 17: 22-35 (2010)
  • 38. Core Sexuality: Nature - Not Nurture!  “There is no indication that social environment after birth has an effect on gender identity or sexual orientation” Garcia-Falgueras A, Swaab DF. Sexual hormones and the brain: an essential alliance for sexual identity and sexual orientation PEDIATRIC NEUROENDOCRINOLOGY 17: 22-35 (2010)
  • 39. We Don’t Learn Our Sexuality. We Discover It! Sexual Identity, Sexual Orientation, and Sexual Anatomy Can Be In Any Combination.
  • 40. Three  Somatic Morphology (X axis) Dimensions of  Sexual Identity (Y axis) Core Sexuality  Sexual Orientation (Z axis) Gynecentric Androphilic Gynemorphic Andromorphic Everyone occupies a Gynephilic point in this three- dimensional space! Androcentric
  • 41. Sex ≠ Gender  Sex is biological  Gender is cultural  Gender “traits” differ from culture to culture and from time to time Castor Semenya Controversy over whether this South African eighteen-year old should be allowed to compete as a woman continues
  • 42. The “Gender Binary”  We live in a “binary gendered” culture with two genders only – Woman – Man  Many cultures recognize more than two genders
  • 43. Disordered or Just Different?  Gender binary has permeated medicine  The medical profession has pathologized and stigmatized gender- variant peoples – Lesbian, gay, bisexual people – Transsexual people – Intersex people
  • 44. Medical Profession’s Treatment of LGBT People 1952 (DSM-I) Sociopathic Personality Disorders 1968 (DSM-II) Sexual Deviation 1970 Gay rights activists storm APA annual convention 1972 APA annual meeting –first-ever panel of non- patient homosexuals” and Dr. Anonymous 1973 (DSM-II Revision) Deletion of Homosexuality Substitution of Sexual Orientation Disturbance (Homosexuality is not illness but supposedly discomfort with being persecuted as a homosexual is an illness) 1980 (DSM-III) Gender Identity Disorder (GID) Ego-dystonic Homosexuality (formerly SOD) 1987 (DSM-III Revision) Homosexuality omitted entirely (Ego-dystonic homosexuality/SOD removed. It’s normal to not want to be persecuted & empirical data to support diagnosis is lacking))→ 2000 (APA Position Statement) Ethical psychiatrists should stop conversion or “reparative therapies” Homosexuality was removed from the list of mental disorders by the World Health Organisation in 1990
  • 45. Medical Quackery Continues  Genital normalization surgeries on newborns continue!  DSD = Disorders of Sexual Development  OII objects to “disorder” terminology http://www.gopetition.com/petitions/solidarity-with-the-intersex-community.html  Milton Diamond recommends “Differences” or “Variations” of Sex Development http://adc.bmj.com/content/91/7/554/reply#archdischild_el_2460?sid=437e97e7-049d-42c8-b60f-6d8d02dd31c1 http://adc.bmjjournals.com/cgi/eletters/91/7/554
  • 46. Intersex Problems Are Socio-cultural  “The basic problems faced by the intersexed are socio-cultural in nature and not medical and are a result of the dogmatic fundamentalism inherent in the current binary construct of sex and gender”  “Some intersexed individuals are subjected to genital mutilation in childhood as a result of this totalitarian, sexist oppression” Curtis Hinkle - Founder Organization Intersex International http://www.gopetition.com/petitions/solidarity-with-the-intersex-community.html
  • 47. Different but Not Disordered  “Around the world intersex individuals are being subjected to inhumane and degrading altering surgical and hormonal procedures, without consent of the intersex person, at the discretion of doctors and outside legal regulation. This is done to “normalize” genitals and bodies in order to fit intersex people within the sex binary of men and women. Pathologization of intersex individuals results in gross human rights violations and abuse of bodily integrity and personal dignity.” 1st International Intersex Forum, Brussels, Sept. 3-5, 2011
  • 48. Phall-O-Meter Sharon E. Preves. INTERSEX and IDENTITY The Contested Self Rutgers University Press (2003)  Whatever happened to “informed consent?”  Whatever happened to “first, do no harm?”
  • 49. Genital “Normalization” Surgery - Dismal Outcomes  23% of participants (46XY, Quigley grade 2-4, average 3.5, roughly half were assigned/raised as boys, half as girls) were dissatisfied with sex of rearing – Indicating “general predictions cannot guarantee future gender development for any single case” – This figure could be as high as 44% (if all non-participating patients were also dissatisfied)  Majority (62% men, 67% women) sought counseling concerning condition  Mean surgeries: men 5.8; women 2.1  Half were dissatisfied with body image  Two-thirds were dissatisfied to some degree with sexual function  Researchers never asked: What if we did nothing? Migeon; CJ, Wisniewski, AB, Gearhart JP, Meyer-Bahlburg, HFL, Rock, JA, Brown, TR, Casella, SJ, Maret A, Ngai KM, Money J, Berkovitz GD. Ambiguous Genitalia With Perineoscrotal Hypospadias in 46,XY Individuals: Long-Term Medical, Surgical, and Psychosexual Outcome PEDIATRICS 110:10p (2002)
  • 50. NEW STANDARDS OF CARE American Academy British Association Pediatric FOR Pediatricians Surgeons INTERSEX PATIENTS year 2000 year 2001 Diamond, M. Sex, gender, and identity over the years: a changing perspective CHILD AND ADOLESCENT PSYCHIATRIC CLINICS OF NORTH AMERICA 13:591-607 (2004) No surgical moratorium #1. General moratorium on sex (In1999, AAP decided that surgical moratorium was “unrealistic” because it No surgical moratorium assignment cosmetic surgery was hypothesized that parents would not accept it) #2. Moratorium should not be Recognized need for more Recognized need for more lifted unless and until studies research and greater candor research and greater candor show outcomes are positive and honesty and honesty #3. Efforts should be made to No call back to families or No call back to families or undo effects of past physician individuals that had previous individuals that had previous deception and secrecy treatment treatment Informed consent includes Response to intersex birth “Social emergency” “possibility of non-operative management” All virilized females (CAH or Gender assignment on maternal androgen) should be Gender assignment individual basis; may include girls (because of retained cultural considerations fertility) Infants raised as girls “will “There is a strong case for no Clitoral surgery usually require clitoral clitoral surgery in lesser reduction” degrees of clitoromegaly” PAIS infants “in whom a very small phallus mandates a The risk of malignant testicular Penile surgery female sex of rearing” should changes in AIS is small have testes removed
  • 51. Pediatric Policy Is Reprehensible  2006 Consensus Statement - chose term “Disorders of Sexual Development” – Dismiss “sexual identity” issue  “Structure of the brain is not currently useful for gender assignment”  Factors they say influence their decision on gender assignment – Diagnosis – Genital appearance – Surgical options – Need for lifelong replacement therapy – Potential for fertility – Views of family – Circumstances relating to cultural practices Collaboration with participants in International Consensus Conference on Intersex organized by Lawson Pediatric Endocrine Society and European Society for Paediatric Endocrinology Lee PA, Houk CP, Ahmed SF, Hughes IA. Consensus statement on management of intersex disorders PEDIATRICS 118:488-500 (2006)
  • 52. Pediatric Policy Must Change  Pediatricians use parental distress & prejudice to justify damaging surgery Lee PA, Houk CP, Ahmed SF, Hughes IA. Consensus statement on management of intersex disorders PEDIATRICS 118:488-500 (2006)  Clitoral reduction is “standard clinical procedure” (Dr. Dix P. Poppas, Panel at Weill Cornell Medical College) http://www.cornellsun.com/section/news/content/2010/10/05/weill-medical-college- says-poppas%E2%80%99-surgical-procedure-standard  Pregnant women treated with dexamethasone to prevent “behavioral masculinization” (same-sex attraction and tom-boy behavior) in CAH girls http://www.starobserver.com.au/news/2010/07/15/opposition-to-genital-drugs/27947 Meyer-Bahlburg HF, Dolezal C, Baker SE, New MI. “Sexual Orientation in Women with Classical or Non-Classical Congenital Adrenal Hyperplasia as a Function of Degree of Prenatal Androgen Excess” ARCHIVES OF SEXUAL BEHAVIOR 1: 85-99 (2008),  Let’s follow Columbia’s example Diamond, M. Sex, gender, and identity over the years: a changing perspective CHILD AND ADOLESCENT PSYCHIATRIC CLINICS OF NORTH AMERICA 13:591-607 (2004)  Europe has ethical principles for intersex treatment Wiesemann, C., Ude-Koeller, S., Sinnecker, G. H. G., & Thyen, U. Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents EUR J PEDIATR 169:671–679 (2010)
  • 53. Poor Medical Treatment of Intersex People  Over 50% are misdiagnosed! Minto CL, Crouch NS, Conway GS, Creighton SM. XY females: revisiting the diagnosis BJOG: an International Journal of Obstetrics and Gynaecology 112:1407–1410 (2005)  Intersex people have their own physiology and health concerns that are not being addressed by physicians Holterhus P-M, Bebermeier J-H, Werner R, Demeter J, Richter-Unruh A, Cario G, Appari M, Siebert R, Riepe F, Brooks JD, Hiort O. Disorders of sex development expose transcriptional autonomy of genetic sex and androgen-programmed hormonal sex in human blood leukocytes BMC GENOMICS 10:292 (2009)
  • 54. Intersex People Now Also Crazy!  Special subtype of gender incongruence in DSD is recommended by Zucker’s committee for the DSM-V!  OII responds: “We see no need to further medicalise and stigmatize intersex people by referring to them as necessarily disordered (DSD) and where mistakes in assignment have been made, we see no value in medicalising and stigmatizing them further by applying another form of disorder called ‘gender incongruence’” http://www.intersxualite.org/DSM5.html
  • 55. Germany Is Leading The Way To Ethical Medical Treatment Of Intersex People  Historic public consultation and dialog on intersex – Intersex people in Germany were invited to participate and observe proceedings in an historic public consultation and dialog “on the situation of people with intersexuality [sic] in Germany”. The event has been organized by Deutscher Ethikrat - The German Ethics Council – and its participants include ‘experts’ in intersex, medical people, lawyers, parents of intersex people and some intersex people themselves. June 6th, 2011 http://oiiaustralia.com/13790/intersex-people-germany-experts-deutscher-ethikrat-consultatio/  Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents – “…the psychological and social support of the child and its parents is to be ranked higher than the creation of biological normalcy.” – “…Whenever prognostically uncertain interventions can be delayed until the child is old enough to make decision for themselves, this option should be presented to parents as the preference of choice.” Wiesemann C, Ude-Koeller S, Sinnecker GHG, Thyen U. Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents EUR J PEDIATR 169:671-679 (2010) DOI 10.1007/s00431-009-1086-x
  • 56. Common Concerns - LGBT and I  Not “Adams” or “Eves.” Do not fit the “gender binary”  Stigmatized as “disordered” (rather than “different”)  Cruel and unnecessary medical “treatments” – based on belief in “gender binary” and that sexual behavior is learned  Real medical needs not met by medical profession  “In the closet” (secrecy & shame)  Must “come out” and find each other  Need to politically organize to obtain their human rights  Civil rights issues based on gender expression  Many intersex people share “sex reassignment” issues with trans people  Transsexuality is a subtype of (brain) intersex
  • 57. Discrimination Against Intersex People Is a Socio-cultural Disorder  Intersex people are natural variations  Intersex people are different, not disordered  The suffering of intersex people is not intrinsic to their condition; rather it is imposed by the binary-gendered society/ culture
  • 58. Intersex People Forsaken by Religion and Medicine  Organized religion and the medical profession have been part of the socio- cultural problem and continue to be a problem  The scientific message that “core sexuality is innate” needs to reach the religious communities, medical community, educators, and parents
  • 59. Human Rights Issue: To Be Who We Are  Respect diversity!  People should be able to express themselves wherever they feel comfortable on the feminine-masculine continuum without having rights taken away or medical alterations forced upon them to maintain those rights  All of us, not just the Adams and the Eves, have the birthright to be who we naturally and innately are
  • 60. Basic Human Right: To Be Who We Are!