Peter
11-13-05, 05:08 PM
I am posting my remarks from the Intersex 101 workshop presented at the Creating Change conference yesterday for anyone who is interested in learning more about the public education work that Bodies Like Ours does. Cheryl Chase and Marcus Arana were co-presenters:
Building Community Among Intersex People
Hi,
I am Peter Trinkl, with Bodies Like Ours, an intersex information and peer support organization. Bodies Like Ours was founded about four years ago by Betsy Driver and Janet Green. Betsy Driver is the present Executive Director of Bodies Like Ours. I would like to take this opportunity to talk about importance of peer support and information for intersex people.
In the period following the Second World War, advances in anesthesiology and surgical techniques allowed doctors to attempt to make the ambiguous genitals of intersex children, which often makes our external physical appearance fall somewhere between standard male and standard female, appear normal through surgery. Yet despite infant genital surgeries, we were often aware from an early age that our bodies are different from other children. There is a common misconception that intersex people are born with both fully developed male and female reproductive systems. This is not the case. In intersex people the biological pathways that govern sexual development and differentiation do not progress as they usually do. There is a term, DSDD, Disorders of Sexual Development and Differentiation, but I don’t like to think of it as a disorder.
When one is born with ambiguous genitals, it is frequently considered to be a social and medical emergency requiring surgical intervention. This medical intervention is meant to hide evidence of having a body that is different. As part of this practice, parents and doctors agree to assign a sex to the child, and rear the child with a gender matching the sex assignment. An important discovery in recent years is that many children who underwent infant genital surgery feel that they were assigned a sex and gender that does not match their brain. Also, many intersex children, over a period of time, figure out what is really going on with our bodies, and resent the secrecy and deception surrounding past treatments.
There is often considerable psychological trauma involved. Although intersex people usually discover the truth about our lives when young, we often enter into a long period of personal denial. Intersex lives can be marked by repeated episodes of psychological difficulties unless this cycle of isolation and shame is broken.
This is were organizations like Bodies Like Ours, The Intersex Society of North America, and the Intersex Initiative are extremely valuable. These organizations provide excellent support for intersex people usually through our web sites. The addresses for these sites are:
www.bodieslikeours.org
www.isna.org
www.intersexinitiative.org
These organizations, and others in different countries, let intersex people know that we are not alone and there are are other intersex people in the world. It is really important to discover that one is not the only person who has lived with an intersex condition. It is also important for the parents of intersex children to know that they are not alone. These support sites have proven to be quite popular, with Bodies Like Ours alone averaging about 80,000 visitors a month, of which about half are real people and the other half are search engine spiders that crawl the web looking for online information. In an average month, the site is visited by people from over a hundred countries around the world. The Intersex Society of North America and the Intersex Initiative also have a huge international following.
Bodies Like Ours hosts an on-line forum where intersex people and our allies are free to join in and post messages. These messages often express deep gratitude for finding Bodies Like Ours. For many it is an opening of doors leading away from past secrecy and deception. This openness is itself a “virtuous circle” in that ending the individual shame and secrecy surrounding our lives flows back into the society at large, and slowly parents are moving away from what the Intersex Society of North America has calls the “concealment” model of intersex treatment.
Many intersex people want the past “concealment” model of intersex treatment replaced by a “patient centered” model of intersex care. Under the new model, there would be honestly and openness between parents, doctors, and intersex people. Our youthful questions about our bodies would be consistently answered in an open and honest manner. Although there are some intersex conditions, like having urinary problems or certain metabolic conditions that can be dangerous if left untreated, the vast majority of intersex conditions do not require immediate medical intervention. Instead of early sex and gender assignment, it is recommended that doctors and parents wait until such a time as an intersex person can be fully involved in giving informed treatment consent at a legally appropriate age. This view has been endorsed by the San Francisco Human Rights commission which issued a finding in its recent intersex report, that failure to obtain full informed consent from an intersex patient, in cases where there is no medical emergency that requires treatment, is a human rights violation of an intersex person’s most basic rights to dignity and autonomy.
Online intersex support sites are an excellent source of general information about intersex conditions. There are many different conditions that fall in the area of being intersex conditions. Although none of the information publicly provided by intersex support web-sites is intended to diagnose or treat any specific medical condition, many people discover a wealth of information in the FAQ sections of these sites. The following path to self-discovery is very common. First, an intersex person has long standing unresolved questions about their body. Through a magazine or perhaps a radio or television show, this person learns that there are other intersex people out there. This may lead to an internet search on the word “hermaphrodite”, which in turn leads to doing a search on the associated, and more medically correct term “intersex”. This search opens up a wealth of new connections.
One may wonder why I bring this up. It is increasingly common to use an on-line search engine to research information that is of interest to a computer user. In the case of intersex people, there is often no real alternative. The local public library probably does not carry books on being intersex, and such books are often difficult to obtain. Although intersex conditions are fairly common, with a frequency of greater than one in two thousand births, support is often difficult to find. There are more than three million intersex people in the world. On-line support is one of the most valuable tools that we presently have for intersex people to connect with other intersex people, and can be a valuable referral source for condition specific support groups.
Bodies Like Ours, as part of our public services, hosts an on-line discussion forum. We invite people to visit the site and learn more about our lives.
Peter
Building Community Among Intersex People
Hi,
I am Peter Trinkl, with Bodies Like Ours, an intersex information and peer support organization. Bodies Like Ours was founded about four years ago by Betsy Driver and Janet Green. Betsy Driver is the present Executive Director of Bodies Like Ours. I would like to take this opportunity to talk about importance of peer support and information for intersex people.
In the period following the Second World War, advances in anesthesiology and surgical techniques allowed doctors to attempt to make the ambiguous genitals of intersex children, which often makes our external physical appearance fall somewhere between standard male and standard female, appear normal through surgery. Yet despite infant genital surgeries, we were often aware from an early age that our bodies are different from other children. There is a common misconception that intersex people are born with both fully developed male and female reproductive systems. This is not the case. In intersex people the biological pathways that govern sexual development and differentiation do not progress as they usually do. There is a term, DSDD, Disorders of Sexual Development and Differentiation, but I don’t like to think of it as a disorder.
When one is born with ambiguous genitals, it is frequently considered to be a social and medical emergency requiring surgical intervention. This medical intervention is meant to hide evidence of having a body that is different. As part of this practice, parents and doctors agree to assign a sex to the child, and rear the child with a gender matching the sex assignment. An important discovery in recent years is that many children who underwent infant genital surgery feel that they were assigned a sex and gender that does not match their brain. Also, many intersex children, over a period of time, figure out what is really going on with our bodies, and resent the secrecy and deception surrounding past treatments.
There is often considerable psychological trauma involved. Although intersex people usually discover the truth about our lives when young, we often enter into a long period of personal denial. Intersex lives can be marked by repeated episodes of psychological difficulties unless this cycle of isolation and shame is broken.
This is were organizations like Bodies Like Ours, The Intersex Society of North America, and the Intersex Initiative are extremely valuable. These organizations provide excellent support for intersex people usually through our web sites. The addresses for these sites are:
www.bodieslikeours.org
www.isna.org
www.intersexinitiative.org
These organizations, and others in different countries, let intersex people know that we are not alone and there are are other intersex people in the world. It is really important to discover that one is not the only person who has lived with an intersex condition. It is also important for the parents of intersex children to know that they are not alone. These support sites have proven to be quite popular, with Bodies Like Ours alone averaging about 80,000 visitors a month, of which about half are real people and the other half are search engine spiders that crawl the web looking for online information. In an average month, the site is visited by people from over a hundred countries around the world. The Intersex Society of North America and the Intersex Initiative also have a huge international following.
Bodies Like Ours hosts an on-line forum where intersex people and our allies are free to join in and post messages. These messages often express deep gratitude for finding Bodies Like Ours. For many it is an opening of doors leading away from past secrecy and deception. This openness is itself a “virtuous circle” in that ending the individual shame and secrecy surrounding our lives flows back into the society at large, and slowly parents are moving away from what the Intersex Society of North America has calls the “concealment” model of intersex treatment.
Many intersex people want the past “concealment” model of intersex treatment replaced by a “patient centered” model of intersex care. Under the new model, there would be honestly and openness between parents, doctors, and intersex people. Our youthful questions about our bodies would be consistently answered in an open and honest manner. Although there are some intersex conditions, like having urinary problems or certain metabolic conditions that can be dangerous if left untreated, the vast majority of intersex conditions do not require immediate medical intervention. Instead of early sex and gender assignment, it is recommended that doctors and parents wait until such a time as an intersex person can be fully involved in giving informed treatment consent at a legally appropriate age. This view has been endorsed by the San Francisco Human Rights commission which issued a finding in its recent intersex report, that failure to obtain full informed consent from an intersex patient, in cases where there is no medical emergency that requires treatment, is a human rights violation of an intersex person’s most basic rights to dignity and autonomy.
Online intersex support sites are an excellent source of general information about intersex conditions. There are many different conditions that fall in the area of being intersex conditions. Although none of the information publicly provided by intersex support web-sites is intended to diagnose or treat any specific medical condition, many people discover a wealth of information in the FAQ sections of these sites. The following path to self-discovery is very common. First, an intersex person has long standing unresolved questions about their body. Through a magazine or perhaps a radio or television show, this person learns that there are other intersex people out there. This may lead to an internet search on the word “hermaphrodite”, which in turn leads to doing a search on the associated, and more medically correct term “intersex”. This search opens up a wealth of new connections.
One may wonder why I bring this up. It is increasingly common to use an on-line search engine to research information that is of interest to a computer user. In the case of intersex people, there is often no real alternative. The local public library probably does not carry books on being intersex, and such books are often difficult to obtain. Although intersex conditions are fairly common, with a frequency of greater than one in two thousand births, support is often difficult to find. There are more than three million intersex people in the world. On-line support is one of the most valuable tools that we presently have for intersex people to connect with other intersex people, and can be a valuable referral source for condition specific support groups.
Bodies Like Ours, as part of our public services, hosts an on-line discussion forum. We invite people to visit the site and learn more about our lives.
Peter