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 Intersex Health Intersex Health

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Breaking the Binary

All to often, western society has made the assumption that our society is built off of a binary of physical sex, perceived gender, gender identity and gender roles. But this is far from reality.

As an anthropologist once said, there are 27 genders and counting. It is important to realize that the systems of gender are just that, a system created by society, often times as a means to quantify and qualify an individuals’ gender.

However, often times, an individuals’ gender identity, or how they identify, can be quite different from how they present in society or their gender presentation, it can often be quite different from how society perceives their identity, and even further, it can be quite different from an individual’s physical sex.

Physical vs. Identity

neither physical sex nor gender identity can effectively put into a binary, but rather, should always be looked at as a spectrum.

Physical sex can vary greatly from person to person. At what point do we qualify an individual’s genitals as a penis or a vagina, and what happens when those genitals are something in between?

Often times, those individuals with with a reproductive or sexual anatomy and / or chromosome pattern that don’t fit the typical definitions are defined as intersexed, or as having a difference of sex development, or DSD

 

The statements and resources below are provided by Advocates for Informed Choice and the Interface Project
The statements and imagery above are that of the Gender Expansion Project and may not reflect the mission and vision of AIC or IP. 

intersex health - no body is shameful

What is intersex/DSD?

An estimated one in 2,000 babies is born with a reproductive or sexual anatomy and/or chromosome pattern that doesn’t seem to fit typical definitions of male or female. The conditions that cause these variations are sometimes grouped under the terms “intersex” or “DSD” (Differences of Sex Development). These conditions include androgen insensitivity syndrome, some forms of congenital adrenal hyperplasia, Klinefelter’s syndrome, Turner’s syndrome, hypospadias, and many others.

Intersex people or people with DSDs have lived in all cultures throughout history. These conditions occur naturally, if rarely, and individuals and societies have developed different ways of responding to this reality.

How has American society responded to intersex conditions or DSDs in the past?

One reason many people haven’t heard of intersex conditions or DSDs is that these conditions are not widely discussed. In America beginning in the 1950’s, infants and children with intersex conditions or DSDs were routinely given multiple surgeries and other medical interventions intended to make their bodies appear more typical. Their families were told to keep their conditions a secret, sometimes even from the child. Sometimes doctors didn’t tell the parents or the children the full truth about the child’s condition. At that time, doctors believed that early surgical intervention and secrecy would help the child develop a “normal” gender identity as either a boy or a girl. Most children with intersex conditions or DSDs were lost to follow-up after surgery and no significant studies were done to evaluate this treatment.

How have intersex adults and families of affected children worked to improve care?

In the 1990’s, intersex adults began stepping forward to say that the medical treatment they received in childhood was harmful, leading to sterility, ongoing pain, scarring, incontinence, loss of genital sensation and sexual function, and depression. Many also pointed out that the secrecy surrounding their conditions had led to damaging feelings of shame and stigma.  Leaders of the adult intersex community called for an end to unnecessary surgeries, and for children with DSDs or intersex conditions to have a voice in their own treatment. At first, their input had little effect on the treatment of children. In the late 90’s, however, the single case study that provided the basis for the surgery/secrecy model was discredited. The insights of intersex adults began, slowly, to have some impact on the treatment of children born with intersex conditions or DSDs.

At around the same time, parents of children with intersex conditions or DSDs began to find each other and form support groups. They realized that they, too, were not alone. They began to advocate for models of care that take the experiences and wisdom of children and their families into account. Parents’ groups have organized mostly around specific medical conditions, and have advocated for complete disclosure of medical information to parents, more research, more sensitive care of families (especially at the time of diagnosis), and more psychological and peer support for parents and affected children. These efforts have also started to impact standards of care and support for research.

What happens to children who are born with intersex conditions or DSDs today?

In response to the urging of parents, affected adults, and clinicians, new standards of care have recently been released by the Consortium on Disorders of Sex Development and the International Consensus Conference on Intersex. These standards are not binding, and no data has yet been gathered to show whether they are being widely used. However, they do signal progress. The new standards encourage doctors to give parents complete information about their child’s condition. Generally, parents are also no longer told to keep their child’s medical condition a secret from the child. Many doctors now recommend psychological support for families and children rather than secrecy and avoidance. However, many families still lack access to these support services.

Surgical treatment of children with intersex conditions or DSDs is currently a very controversial topic among specialists. Some doctors are suggesting a more restrained approach to surgery, and some contend that new surgical techniques may have better outcomes than older ones. Other doctors recommend postponing surgery until the child is old enough to participate in the decision, pointing to the lack of data showing that surgery benefits the child. In spite of what the NIH has termed “a crisis of clinical management,” elective genital surgery on infants with DSDs or intersex conditions is still the predominant practice in the U.S.

There continues to be a shortage of follow-up studies, and little is known about how current treatment models actually impact the lives of affected children.  Parents of children with DSDs or intersex conditions find themselves in the difficult position of making medical decisions they never anticipated, in an area where medical opinions are sharply divided, and with little evidence to guide them.  Furthermore, while some parents are comfortable with the information given to them by their children’s doctors, others report feeling pressured to make quick decisions without adequate information or support.

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Resources for intersex individuals in Montana

interfaceproject

P.O. Box 9153
Missoula, MT 59807
www.interfaceproject.org
info@interfaceproject.org
Phone: 406-480-6228

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Other Resources

Accord Alliance

Accord Alliance promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by disorders of sex development (DSD).

Advocates for Informed Choice (USA)

AIC uses innovative legal strategies to advocate for the civil rights of children born with variations of reproductive or sexual anatomy.

AIS-DSD Support Group for Women and Families

Dedicated to helping women and children with AIS (Androgen Insensitivity Syndrome) and other DSDs.

Beautiful You MRKH Foundation

Promotes self-esteem, and empowers girls and women with MRKH to embrace their beauty, just as they are.

Bodies Like Ours

Seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support.

CARES Foundation

Works to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research.

Congenital Adrenal Hyperplasia Education and Support Network

DSD Families

An online information and support resource for families with children, teens and young adults who have a DSD.

GATE-Global Action for Trans* Equality (Argentina)

A group of activists working for trans* and intersex equality worldwide.

Gender Spectrum

This service is for children and their families who might be thinking about a change of gender assignment

GrApSIA (Spain)

Association and support  group for people affected by the syndrome Androgen Insensitivity and related conditions.

Houston Intersex Society

Supports and helps end shame for those that were born intersex, DSD, hermaphrodite, eunuch, zwitter, and etc.

HelpUsAdopt.org

Dedicated to the countless parents waiting to adopt and to the thousands of birthparents selfless enough to let us adopt your children.

Hypospadias and Epispadias Association

Founded for the education and support of people born with hypospadias or epispadias, their families, and loved ones.

Intersex Germany

Intersex Initiative

A Portland, Oregon-based national activist and advocacy organization for people born with intersex conditions.

Intersex Society of North America

Devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decidedis not standard for male or female.

Intersex Trust Aotearoa New Zealand

A New Zealand registered charitable trust and provides information/education and training for organisations and professionals who provide services to intersex people and their families.

Intersex UK (United Kingdom)

Committed to achieving equal human rights on behalf of all intersex people.

Organisation Intersex International (Australia)

The Australian affiliate of OII. An activist and support organisation by and for intersex people. Their activism focuses on human rights and on evidence-based, patient-centred healthcare.

Organisation Intersex International – Chinese

Organisation Intersex International (Germany)

The German federal representation of the International Association Intersex people (OII) / Organization Intersex International (OII).

Organisation Intersex International (USA)

Promotes the human rights of intersex people, particularly the right to bodily integrity and self-determination

SIPD-Support Initiative for People with Atypical Sex Development (Uganda)

A grassroots not for profit support initiative in Uganda, which through community outreach and engagement, provides reliable and objective information on the plight of persons with atypical sex development (also preferrably known as Intersex conditions) and similar anatomical variances in Uganda.

TrIQ (Germany)

A social center and a political, cultural and research activities of active association that advocates for trans, intersex and queer people living in Berlin and beyond.

Zwischengeschlecht (Zurich, Switzerland)