Media for social change

9 Comments »

I would like to point out that OII (Organisation Intersex International) is very diverse with board members from all continents and that OII does not advocate ONE way of treating intersex people and infants. The only rule that we have is

DO NO HARM

Respect the child and the child’s identity and body and let the child have input into what is done to their body and let the child determine its own identity.

OII does not condemn surgery. OII condemns surgery without consent when there is not medical emergency.

http://www.intersexualite.org/English-Offical-Position.html

Kind regards,
Curtis E. Hinkle
Founder, Organisation Intersex International

Well how does someone know the wishes of a toddler or baby?

Having just looked at the CBC documentary notes, there are two choices “Man” or “Transgender”. This is just what I find hurtful. |how about an intersex person write something here for you? I would be happy to do it. As a member of OII and the AISSG. I say this because these documentaries just discuss sex sex sex and sex. I am a human being not a strange sex object. This is an important point to many of us.

“Dr Devendra Gupta, an organizer of the III World Congress Hypospadias and Disorders of Sex Development and member of IHSID, when asked about whether or not doctors should perform surgery on infants to change the appearance of their sex organs wrote this: “It should be the wish of the patient and the parents that has to be honoured. Doctors only advise according to the knowledge they have acquired.””

“It should be the wish of the patient…” This is exactly the point of us intersex human rights activists. These doctors have NO idea what the wish of their infant and toddler patients is, or will be when they reach sexual maturity! These doctors and parents have NO idea what the innate gender identity of these patients is and how the irreversable genital surgeries they perform on their helpless victims will effect their lives! Thus ALL of their non-medically necessary surgical alteration of these human beings’ genitals is purely being done for their own wishes and the so-called “wishes” of the parents, who are probably being directly or indirectly coerced or indoctrinated by either/and/or the doctors themselves, their religious leaders or other social forces. Only one thing is absolutely certain, life-changing sex-assignment non-medically-necessary surgeries are certainly NOT any wish of the actual infants and toddlers that such surgeons sexually mutilate without their consent! How can this Dr. Gupta dare to speak of the “wishes” of his patients when they are infants or even young children who cannot defend themselves?

The whole point about consent and a legal age is that civilized societies recognise that people under a certain age are incapable of giving their well-informed and reasoned consent to something as life changing as having sex, or getting sex-change surgery. Statutory rape laws are based upon this. If it is illegal for an adult man to sexually fondle a child, even if the child invites him to, how can it be legal for an adult man to surgically castrate or create a vagina in a non-consenting infant or child? Why is this not a human rights and medical ethics issue of the greatest import and urgency? When sex-assignment enforcing non-medically-necessary genital surgery is FORCED on a non-consenting infant or child, why is this just between the doctors and the parents, with no medical ethics or law at all to protect the bodily integrity and most basic human rights of the child, the actual patient whose body is being cut-up and reformed according to someone else’s desire?

I agree. I have sent an email to Dr Gupta and asked him to respond to this question on this blog.

Dear all,

I wish to thank Laura for asking me to join your blog, about which I ad no idea till date. Firstly, I realise there seemed to be a group in ths blog, highly charged with emotions on touching the genitalia by the surgeons, much away from the real needs for that, possibly not due to their faults but more so the different social circumstances.

Surgeons would like to manage the children with disorders of sexual diffentiation only give them a better external look, make them functionally a male or a female accordingl to the best combiunation of male or the female sex organs found and also try to rehabilitate in the family and the society so that they can lead a better quality of life. Emotional sex is one aspect and it should, it is and it should honoured.

Contrary to the general belief, not many would change the sex of the baby or the toddlers. It is usually the need to reshape the same to make it look as near normal as possible so that the parents donot have much embarassment in the family circles and socity. This issue has been debated on many occasions even in the sceintific meetings. The practices vary from country to country and the society to society norms. There are only very very selected indications when one may advice for a change of sex, else mostly it is the reconstrcxtion of the genitalia.

In a CAH case, if the baby has clitoromegaly, hirsuitism, and the parents can NOT expose the baby even in the family to celebrate the first birthday as a boy or a girl - what would be your choice ? To touch or not to touch the genitalia, allow the parents to wait and not to expose the bay till he / she is an adult?????????????????????????????????

Needless to say, an uncecessary and hurried decision on any child born with ambiguity of genitalia, by an ill informed person is strongly discouraged. Problems are too many. Lot of awareness has been created by the like minded person in the field. During the past 25 years or so, we see many positive changes in diagnosis, management, sex assignment and rehabilitation of these children in the society. Let us admit, We still donot understand many aspects of this unusual and challenging problem.

I makes an intersting reading on the blog. I shall be only too happy if I could contribute to the group in any aspect of the subject.

Thanks and regards.

yours sincerly,

Devendra K Gupta
MBBS,MS,M.Ch,FAMS, FRCS (G & Edin), D.Sc (Honoris Causa)
Profssor and Head,
Dept of Pediatric Surgery
All India Institute of Medical Sciences, New Delhi,
email.: devendra6@hotmail.com,

just to make the correction, Devendra K gupta is NOT the organizer of the 3rd world congress of Hypospadias and intersex disorders, being held in Toronto from Nov. 12-15, 2009, being held under the auspices of the ISHID established in 1999. It is a scientific meeting and Prof Pippi Salle from Sick Kid is the local organing Chairman.

sincerely,

devendra

Dear Dr. Devendra K Gupta

Thank you so much for replying to some of our concerns on this blog. I myself am a late-virilizing intersex person. When I was born I looked like a normal girl, and so was raised as a girl. However I never had a female gender identity and I started secretly calling myself “David” at the age of nine. I was much larger and stronger than any other child in my grade school. Then I had precocious puberty, severe acne on my face chest and back, and unknown to my parents, I was having phallic growth, and by my late teens, hair in male-pattern places.

I was 21 when I was first sent to an expert, who thought that I had “late onset CAH”, but tests did not confirm CAH. Now, at the age of 60, my genitals are the way that the surgeon left them (at age 25) after I had a complete lower abdominal hysterectomy, and my cervix and vagina removed from below.

Because I had phallic growth for years before my surgery, my phallus was then like a case of severe hypospadias. In fact a urologist once offered to correct my hypospadias, saying that my condition was the same as other severe cases that he had repaired for normal urination. Unfortunately I could not get any medical coverage for it, so this is still my situation now.

Anyway, the subject of CAH and clitorectomy, verses hypospadias repair etc. is very important to me, as I realize that if had presented at birth as a phallic girl baby, you well-meaning surgeons would probably have done a ‘clitorectomy’ or clitoral reduction on me, not guessing that I had an innate sense of male-ness that I would eventually express, even after being raised as a girl. Of course my virilization occurred when something in my body started producing androgens. Since it was not CAH / an adrenal problem, and my self-virilization stopped once my ‘ovaries’ gonads were removed, it seems that I had either an ovo testes or androgen producing cystic ovary disease. To me the cause of my masculinization is not important, but the fact that I was certain of my selfhood, having a male gender identity from as far back as I could remember, that is what was and is important. I know that you surgeons would have probably removed or reduced my phallus at birth, without my consent.

You said:

“In a CAH case, if the baby has clitoromegaly, hirsuitism, and the parents can NOT expose the baby even in the family to celebrate the first birthday as a boy or a girl - what would be your choice ? To touch or not to touch the genitalia, allow the parents to wait and not to expose the bay till he / she is an adult?????????????????????????????????”

My choice would be to counsel the parents to give the baby up for adoption to parents who could love and accept the baby just as it is. The problem, as you have clearly stated it, is the parents and society, not the baby. Feminizing surgery on a CAH baby, as you have described, runs the high risk of feminizing a person who has an innate male gender identity, like I do. Why should the parents and family be so afraid of an intersex infant, that they can’t even ‘expose’ it? Either they must get rid of their superstitious beliefs etc. or they must give the baby to someone else who can really love it.

Dear dr. Devendra Gupta

I very much appreciate your contributing to this conversation, I also admire your bravery in talking here considering the anger some of us feel towards various members of your profession right now. I am not going to deny that I am not one of those people who feels angry, but given that you have taken the time to talk I consider this a very positive thing.

In my own chase the childhood surgery and the assumptions about my “Psychosexual adjustment” caused more problems that they solved, in fairness this was at the same time children like David Reimer were being surgically “fixed” over previous injury rather than any underlying condition, so in a sense that time was a bit an open season when it cane to infant genital surgery. I will be truthful with you Dr. Gupta, the diagnostic tools available to you with regards deciding what sex to “assign” an intersex child to are far from accurate, and we are looking at the potential for repeating the mistakes of people like Dr John Money who came up with theoretical models which surgeons acted on.

There are numerous factors which I have to admit having experienced personally that make me deeply skeptical of the practices you are currently advocating.

1: The surgery does have complications, especially the surgery to render someone outwardly more “male”, though in terms of assigning a sex either way the outcomes are physically not perfect. As a surgeon you are aware of this, do you not think it is better to wait until a child can at least decide for themselves what they want? as in “informed consent”.

2: The sex the child will grow up sensing themselves to be; there is no way that can be readily predicted, and it has been my experience that when the rejection of the assigned sex happens, then the “Psychosexual adjustment” that is undertaken is very punitive. I ended up physically attacking a few medical professionals because of this. While as a teenager at the time I had to take responsibility for that, had the situation been dealt with differently it would never have come to that.

3: The ongoing sense of feeling like you are sub human, like “the family secret” or “the issue that must never be discussed”. I have to say that terminology like “Disorder of Sex Development” and treating such a child as fundamentally disordered in some way does not help.

When many of us are led to believe that this had been understood by the medical profession we find a sort of Videodrome style presentation of the surgery and the proposed follow up “Care” being made even more punitive.

I appreciate that these criticisms may appear quite far removed from what you as a surgeon have come to understand how all these treatment protocols work. But I can assure you, as someone who was on the receiving end of such “treatment” that in many cases at least one of the factors I have mentioned will undermine significantly the things you are trying to achieve in many more individual cases than you are led to believe.

I am sure that we would both agree fully that education would be needed, but given the press coverage of an intersex athlete recently it seems we all have a steep hill to climb. Perhaps it is time we all had a two way conversation. Despite my strong feelings of anger towards what you represent as a professional I am still more than happy to talk because I believe the only way things are going to improve are if people do talk.

All the best

Sophie

Your comment

Name (required)

E-Mail (Required, not published )

Website

HTML-Tags:
<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>