ER Episode Masquerade

ER Episode: 'Masquerade'

In October '98, one of our members, an AIS 54 year-old, emailed a group of AIS women...

Earlier this evening, ______ [my neice] called me and said, "Quick, turn on 'ER' on NBC, they're doing a thing on a little girl who has AIS!" So, I dropped everything, ran and turned on the TV and sat there wired.....

So began our exposure to a coverage of AIS on a popular television show. We present here a synopsis of the relevant parts of the show, some letters sent to the producers (none of which produced any visible results) and some of our discussions.

Synopsis

The AIS 54 year-old related the ER storyline:

An 11 year old girl was brought into the emergency room with abdominal injuries suffered in an auto accident. Surgery was performed and while examining the abdominal cavity one of the physicians came across what he thought were growths. One of the doctor, a woman, takes a biopsy down to the lab for tests. While the young girl is still in surgery the woman doctor comes back with the results. When she comes in she plays a guessing game with the other doctors on the results. The doctors are still involved in the surgery and then she announces "She's a boy."

Later, the male and female doctor entered a room where there sat a troubled 30-ish husband and wife who were obviously worried about the results of their 11 year old daughter's surgery. The two doctors begin relaying information to them in something of a Jack Webb/Dragnet fashion: "The surgery revealed your daughter had testes" (much to the shock of the poor parents), "Your daughter has a condition known as testicular feminization....", "She will never menstruate or be able to have children...." , "The vagina consists of a blind pouch....", "She will have to be on HRT the rest of her life....", and on and on.

They covered all the bases and gave the basics for the syndrome.....but they said it all in deadpan fashion....totally emotionless....literally, just as Jack Webb and Sergeant Friday would have done it on that old 50's program, 'Dragnet'. But I was able to overlook the delivery, realizing that they had given the information....and I smiled at myself as I pictured some young girl out there this evening suddenly identifying her condition. I was....literally.....filled with joy.

But, then......as the male and female doctor stepped outside the room after informing the parents of their daughter's condition (their daughter was named Barbie), the male doctor turned to the female doctor and said something like, "You handled that very well...... but you should have told them they're going to have to change their daughter's name from Barbie to Ken".

Immediate Reactions

An AIS 44 year-old (1) emailed:

I hate this type of sensationalism. One big point for me is that the doctors removed the testes under the auspices of the cancer scare, when in reality they took them out because they thought they were growths. At least they are keeping to reality and starting the lies early.

The Barbie/Ken thing: This is the part that made me ill. The good thing is that one of the most watched TV shows in North America covered the subject. The treatment sucked. The fact that those women who may not know their true diagnosis, and then realizing through the TV show that this might be their diagnosis, and having to hear the line about "maybe they should call her Ken" gave me the creeps. The fact that it was their Halloween show did not set well with me either. Trick or Treat! You're a boy!

I thought the selection of the actress to play the young 11 year old was great. Just a typical young girl. There was a touching scene where the same woman doctor that comes back with the results of the biopsy returns to the girl's hospital room and talks about "typical" things with the young women. The little girl wants her tiara from her Halloween fairy costume and the doctor set the tiara on the young girl's head. I read into this being "you are a young girl, you're OK and I'll validate you." The girl knows nothing at this point. Maybe this continues on the next show? I have real mixed feelings about the handling of the subject. It's great that it's out there. It could have been soooo much better. I still think it sucks.

I talked to my boyfriend after the show and I was so proud of the first words out of his mouth. "Why did they take the testes out of a 11 year old. I thought they should remain inside to ensure natural hormones through puberty?" What a guy!! He does listen.

An AIS 36 year-old emailed:

Well, I didn't see this episode of ER because I'm in performance this weekend...but I know my sister was VERY emotionally upset about it...she was watching with her family (husband and kids). She taped the last half for me. I INTEND to both email and snail mail a letter about it. I hope as many of us as possible will write - wouldn't it shock them if they thought "this is so rare" that it won't upset many - it's worth that cheap laugh (Barbie/Ken). I also saw the Chicago Hope episode (1st or 2nd season) and although I was emotionally upset by the parent's initial rejection of the baby, I thought it was handled more ethically. Although when I read your emails, I thought "Gee, that sounds like the bastard doctors and interns I dealt with." Reality, yes? Ethical for the world coach potatoes, no.

An AIS 45 year-old emailed:

I, too, was blown out of my couch-potato berth..... As my husband said, they used A.I.S. (a term which actually didn't come up at all; it was 'T[esticular ]F[eminization]' [they used]) for its entertainment/sensational value. And he thought that the way that the sympathetic doctor described it to the parents sounded like this girl wasn't "essentially" female but that she was female because she looked that way and her parents had raised her that way (and, remember, this "good" doctor - as opposed to the one making the Barb/Ken comment - had already announced to her fellow physicians that the girl was really a boy). Sure, the good doctor redeems herself a bit toward the end of the program when she talks to the girl about her Hallowe'en costume and puts the tiara on her head. But I thought the whole gist of that was: okay you folks out there in TV-Land, get the pathos -- here's this kid who thinks she's a girl and looks like a girl, and even wants to wear her Hallowe'en tiara, but, by golly, she isn't REALLY a girl. A little Hallowe'en trick for y'all.

It could have been worse, but I thought it was pretty bad. I went to bed feeling sick, and I still feel sick today. I think of my friends and former lovers who might have watched the show, and feel shame about them seeing my situation in that light. The whole focus was on the genes and the testes, but there was no mention of how she'd been already feminized by her own hormones. I'm with you, totally livid. Can/should we do anything about this?

An AIS 35 year-old emailed:

I too was disappointed to see the treatment of AIS in ER. I am upset sorta too..but my thinking here is don't get mad get even....and a very good way is to write the producers of ER at NBC, I think that is the carrier of the show... and express our rage and their misrepresentation at the perpetuation of the neanderthal thinking....but as well, I do think that this is the initial response that regular people have...because of ignorance and how people react with something out of their sphere of knowledge (doctors and nurses don't learn about it because the majority of their time is trying to fix problems (or so my sister ______ says...(she never learned anything in her training at all.) I remember when "Chicago Hope" tried to deal with the situation it was done in a much more sympathetic way but still the reaction was "holy #$&%", Rome wasn't built in a day and the one great thing there is that AIS is really coming out...it is not being talked about in dark corners so much anymore.....it's mainstream...

Letters to NBC

Several members of the support group sent a series of messages to the producers:

An AIS 28 year-old emailed NBC:

To: er@nbc.com
Subject: Sensationalist treatment of Testicular Feminization
Date: Fri, 30 Oct 1998

To whom it may concern:
I do not know if this email will ever reach anyone but, as a woman with Androgen Insensitivity Syndrome (you called it Testicular Feminization), I could not possibly sit back and not say something. Your representation of AIS was worse than insensitive....it was sensationalistic and ethically irresponsible.

"You should have told her (the parents) that they will have to change Barbie's name to Ken."

"This girl is really a boy."

These are a few of the comments made during your program by people playing doctors. What do you suppose would be the response from a girl with AIS when she saw that on TV? On a show like ER? Pride? Validation? I don't think so. Try shame....embarassment....or just flat out horror.

You did do somethings right. You got the jist of the syndrome down....but you didn't even get it together enough to use the accepted terminology. I guess Androgen Insensitivity was not as sexy as Testicular Feminization. And to assert to your veiwers that the child is not really a girl because she had testes without considering that the natural reaction of the fetus to the syndrome is to feminize is not only inconsiderate of those with the sydrome but also, just sloppy homework. Was there noone that could have researched the issue more with regard to proper medical management? (11 years old is considered too young for removal of testes as they are still providing a natural couse of estrogen which is more beneficial to the patient, as they go through the typical years of puberty, in strengthening bones and aiding development.)

There are many interesting angles to AIS. The practice of non-disclosure, for one. You could have done something very interesting and watchable with the struggle of one of your actors to tell or not to tell the true nature of the diagnosis to the patient. Believe me, as a member of the AIS support group, this is a very important issue and there is much conflict over the right of the patient to know about their own syndrome. This could have been a real turning point in getting the word out and ratifying the traditional handling of AIS. But as it turns out....you just continued the legacy of deceit, secrecy and shame. Frankly, you blew it.

A frustrated former viewer with Androgen Insensitivity Syndrome.

An AIS 49 year-old emailed NBC:

Dear Sir/Madam,

Re: Episode Featuring 11 Year-old Girl with Androgen Insensitivity Syndrome (AIS)

It is good that you covered a difficult topic in your recent episode but it is a great pity about the following:

1) That you chose to use the obsolete, inaccurate and stigmatizing term 'Testicular Feminization' instead of the more scientifically correct and currently-used term 'Androgen Insensitivity'.

2) That you allowed your actors to deliver ridiculous lines like "She's a boy" and "We should have told them [the parents] they'll have to re-name her Ken."

Girls with AIS are not boys. They look, feel and act like regular girls and go through puberty as a girl, except that they don't menstruate or grow body hair. The bodies of all human beings become female unless acted on in utero by the so-called male hormones (androgens). This is known medically as the Eve Principle. Testes produce female hormones (estrogens) as well as androgens; and because the body tissues in AIS foetuses are insensitive to androgens (due to a genetic error on the X chromosome), the female hormones 'take charge'. Sexual development is ultimately determined by hormone action rather than by genetics or the particular type of gonad (ovary/testis) present.

3) That you portrayed the testes being removed from an 11 year-old AIS girl. The timing of this surgical procedure is controversial and the cancer risk is so minute before adulthood that many believe that it is an infingement of the patient's rights to have this operation forced on them without informed consent, apart from the fact that they then have to undergo a chemically-induced puberty via HRT, rather than via the natural female hormones from their testes.

4) That you did not provide any information at the end of the episode as to how viewers could obtain information and support in the event of them believing themselves to be affected. This is the worst offence of all (particularly in view of your mistake in 2, above) because there may well have been young viewers with AIS who are now driven further into shame, confusion and isolation.

I sincerely hope that if you show the episode again, or if it is sold to other countries, you will provide a means of viewers contacting the AIS Support Group as follows:

http://www.medhelp.org/www/ais

where the contact details of various international branches of the group are to be found.

Regards,

The AIS 36 year-old emailed NBC:

To ER & NBC:
I hope this email will be shared with all the appropriate people at ER and at NBC. I was appalled by your recent episode of ER which featured a storyline about a young girl with AIS. It may have been a sensationalised treatment that appealed to the general audience, but the ethics of the damage it could have done to the few saddens me. What if a viewer only had some details disclosed to them by the doctor (a common case) and heard the Barbie/Ken line? What if a young girl suspected she had AIS and now is more shamed into secrecy? What if family members were watching with an AIS woman and knew the basics of the condition but not the details? Can you imagine the humiliation for her based on your treatment? She's a boy...a Ken! This happened to a friend of mine who also has AIS. She was watching with her husband and children!

Add in that it was shown on Halloween weekend (are AIS patients "freaks"?), that you insisted on using the outdated and stigmatizing term Testicular-Feminization, that the timing of the surgery was not properly handled, and the ethical insensitivity of your writing, and you have lost me as a viewer of ER! I do appreciate that you have taken AIS out of the closet of secrecy to the general public, I just wish you could have done it in a way I could hold up my head and be proud.

I really don't have any idea how you can remedy this. Possibly a news release that apologizes for the stigmatizing portrayal with corrected information...maybe not releasing the episode again...whatever it is, until something happens, I remain... A former Wisconsin viewer (with AIS).

The AIS 45 year-old emailed NBC:

I have been a fan of ER from the start. Okay, the show isn't War and Peace, but for a prime-time, mass-audience series, it often displays unusual intelligence and sensitivity. And George Clooney's a mega-babe. But I was appalled at how you handled the condition I was born with, Androgen Insensitivity Syndrome (you used the out-of-date, inaccurate term Testicular Feminization), in the Hallowe'en show. Thanks to your idiot screenwriter(s) I had a chance to relive all those appointments with inept, old-fashioned doctors who told me I shouldn't feel bad that I was a guy, to re-experience all those misguided, error-filled articles in the popular press that reduced my humanity to the status of curiosity and misrepresented my experience of my gender. Worse, parents with AIS children would have watched the show in utter horror.

No, we are not "boys." This isn't a case of protesting too much; the notion that I am any more masculine than any of my XX friends just does not compute. And had someone on staff done some research into AIS, he or she or they would have realized that hormonally, we women with complete or near-complete AIS are all-female - ultra-female, if you will (because, unlike XX women, we respond minimally or not at all to male hormones)-and that our XY chromosomes and even our testes are kind of academic: they are or were there, all right, but they didn't and don't carry out their masculinizing mandate. On this issue, your doctors are way behind the young doctors out there in the real world, many of whom are informed about AIS and recognize that AIS girls and women are very much girls and women. A lot of them turn to our Website when they have an AIS patient. But your medical consultants failed to do THEIR homework.

I realize that the Barbie/Ken comment was completely in character for Dr. Whathisname, the jerk. But you had a responsibility to counteract his cruel stupidity with some kind of epiphany on the part of Dr. Corday, a realization that chromosomes (and even undescended testes) do not in all cases a man make, and that the real locus of gender is in the individual's sense of self, not in the organs or the chromosomes (yeah, yeah, she went on about the girl looking like a girl and having been raised a girl, ergo, she was a girl, but she missed out on the very important fact that Barbie had been feminized by estrogen produced by her own body). Instead, there was that ambiguous scene in which she puts the tiara on the girl's head. Was she affirming the girl's femininity, or was the director just going for some cheap, heart-tugging irony: Barbie looks like a girl, she thinks she's a girl, but Dr. Corday and you, dear viewer, knows that she's an impostor. I strongly suspect that you had the latter in mind. Shame on you.

The AIS 54 year-old emailed NBC:

To The Producers & Writers of ER:
I am writing to you as a result of your Halloween episode of ER in which you so VERY poorly dealt with Androgen Insensitivity Syndrome (which is the accurate and preferred term for "Testicular Feminization").

I am a 55-year old androgen insensitive woman, and I have struggled my ENTIRE life to come to terms with this syndrome, and just when I felt I had reached a point in my existence where I could accept (and even embrace) this condition, you aired your program and your "doctor's" comment about changing Barbie's name to Ken stripped me of every ounce of dignity and self-confidence I had allowed myself to feel.

You have no idea the damage your program has done to me and countless others, and whoever you are reading this, I hope you will read it to the end, for this wasn't just some story on television, this was my LIFE here, and I want you to know what it was like and what you've now done to it..... I find it very ironic that you would choose to deal with the subject of AIS on your Halloween episode, because Halloween is a night of masquerades and false identities.....and that's exactly how I feel I've spent most of my life.

I've always been told that I am a beautiful woman, and from the day my husband met me 33 years ago, he has always said to me, "You are a woman's woman.....that which all women aspire to". So, imagine what it must have been like for me to look and FEEL completely and totally female.....only to have that feeling chiseled away over my lifetime as I've learned not only that I had no uterus, would never menstruate and would never have children, but that I also had undescended testes and am, in fact, a genetic male.

It left me feeling flawed and completely inferior.....it left me feeling as if my entire life had been some terrible mistake. But, worst of all, it took me to a place where I felt very empty and very much alone, because I felt I could discuss this with no one.....not my husband, not my friends.....not even my own mother. I felt as if a curtain slowly pulled around me and hid me from everyone, and that curtain became both my shield and my barrier, for it put me in total isolation.

A lifetime of that left me so full of self-loathing and so empty of self- esteem that the only thing I wanted out of life was to have it end. I found myself spending my days sitting at my window and looking out at my garage, as I wrote goodbye letters to my husband and hoped for the courage to be able to gather up my three beloved cats and take them out there where we could all die together.

I would not have been the first androgen insensitive woman to end their life, and I wonder how many others will be pushed towards death as a result of your program. That "doctor's" comment wasn't just a slur.....it was the worst possible thing you could have said to us. I use the term "us", because there ARE many of us out here. Many are alone (completely and totally alone), but some of us have found each other through a support group for AIS women and, over this last year, many of us have made great strides in rebuilding our lives and coming to terms with this condition. We've encouraged each other to talk to our family and friends openly and honestly.....to learn to be real for the first times in our lives.....and to put an end to the needless masquarades.

It has taken real courage for me to reach around that curtain and really touch my husband, my family and my friends, and even more courage to finally pull back that curtain and let them see the real me for the first time.....but in doing so, it completely changed my life. But, as I sat there watching your program and I heard that comment, I felt all of my progress slip away from me.....and my self-esteem slipped away with it. You restored the seeds of doubt I had always feared.....and you planted that seed in my family and friends who saw the program, and even if I could somehow overcome this terrible feeling of inferiority that has again swept over me, I know I will forever wonder what my husband, my family and my friends now think of me. In less than one hour you completely changed everything.....you took my life away from me.

I have spent today thinking of the number of young girls who may have been watching your program who suddenly recognized the symptoms of AIS as their own. I imagined the elation they must have felt to finally have a name for what they had, then I imagined the embarrassment and shame they also felt as they heard your Barbie/Ken comment. I also thought of the parents who have young daughters with this syndrome who suddenly lost all hope for their futures. I want you to live with the fact that you have also changed their lives.....forever.

The very least you could do for them is to apologize and somehow retract the statement and offer them the Androgen Insensitivity Syndrome Support Group web address: http://www.medhelp.org./www/ais I am attaching my photograph to this email, because I want you to look into the eyes of an androgen insensitive woman and, as you look at it, think of all the things I have said here. Look at it and know the damage you have done. Look at it and know who I was and who I had become.....and know that you took that all away from me. I want you to remember this letter, and I want you to know that this morning was the first morning in 14 months that I sat at my kitchen window and looked out across my back yard at my garage.....

The AIS 44 year-old (2) emailed NBC:

Dear Sirs:
I have some comments to make about the "Halloween" episode of ER; the one with a story line about a girl with "Testicular Feminization" (Androgen Insensitivity syndrome or AIS), a condition I have myself.

Because I missed this episode, and only heard about it at second hand, I hesitate to be too critical. I do, however, wish to point out how it is always good to consider the impact your show's treatment of a given medical condition might have on persons with that condition. I realize that "ER" is a fiction show whose purpose is entertainment, rather than education. However, some people take the medical information on TV "doctor" shows very seriously. Even if they don't consciously think of these programs as souces of information, if they have little information about a condtion, then what they see on TV will tend to color everything they subsequently hear about it.

"ER" is a show noted for its high standards. Among the AIS women I'm in contact with who saw this episode, the ones who were most disappointed tended to be loyal viewers with a high regard for "ER". They value this show precisely because it is usually medically accurate and not given to sensationalism. (I've sent you a letter from one such viewer in a separate message.)

Androgen insensitivity is especially likely to be misunderstood and misinterpreted, and this can have profoundly negative effects on the lives of those with the condition. Some have needlessly ended up feeling stigmatized as medical freaks, or as people who are "really" males. Among the AIS women I am acquainted with, there are some for whom this has caused more problems than the actual physical effects of AIS.

I understand that there were many good aspects to this show's treatment of AIS, but some things perhaps should have been different. I'm talking mainly of the suggestion that AIS girls are actually boys who should be given masculine names, (or at least, that physicians jokingly make remarks to that effect when the patient and parents are out of earshot.) The latter may, in fact, mirror reality to some extent, but that doesn't justify having such content in your show. Racism exists in real life, but black viewers would still not tolerate gratuitous use of the "N-word" on TV.

I hope your reaction to the comments you receive won't be to avoid this subject. I'm glad you had a show about AIS. I only hope that you will be more judicious in your treatment of it in the future. I'm available to answer any questions you may have, and you can also visit the AIS web site at < http://www.medhelp.org/www/ais > .

An AIS 26 year-old emailed NBC:

I am writing as a concerned woman with Androgen Insensitivity Syndrome. I am in contact with several hundred women with this disorder. A deeply offensive reference was made concerning AIS during the October 29, 1998 broadcast of your top-rated television show, ER.

The reference to AIS was made during the storyline involving a young woman having exploratory surgery following an automobile accident. It was discovered that she had testes - much to the horror of her doctors. During the story line, two seperate characters made disparaging remarks claiming that the youn girl, named Barbie was actually a boy, and should be named Ken. the condition was also referred to as Testicular Feminization, an outdated term.

There can be little doubt that these comments will be taken as fact by your average viewer, as your show is usually quite accurate. These comments were patently offensive. These statements can only serve to stigmatize AIS sufferers.

Many of the women with AIS have experienced psychological problems upon learning of their affliction. They have been dealt with mercilessly at the hands of doctors - often being put on display and used for the testing of medical students. Not being able to conceive children, while often a large problem, is usually the least of our worries. The struggle to find a solid identity, something that most people take for granted, is often one of the most pernicious psycological battles with which we are faced. Even after a woman is able to solidify her identity, it is shaky at best, and very easily undermined.

I know that your television show prides itself on accuracy. However, in this instance a negligent portrayal of AIS was promulgated to millions of viewers across the globe.

As such, I would like to request a formal apology to myself and other women with AIS. I would also like a retraction, as well as an explanation of these insensitive comments on a future episode. I wish to thank you in advance for your cooperation.

An AIS 48 year-old emailed NBC:

I'm writing to you to express concern about a recent episode of ER which contained a storyline about a young girl with Androgen Insensitivity Syndrome (AIS). Although I haven't seen the episode I understand that you referred to the condition by the archaic, stigmatizing and inaccurate term 'Testicular Feminisation'.

Futhermore, I gather that your scriptwriters gave one actor some lines suggesting that the young girl should be called by a boy's name - Ken instead of Barbie. Women with AIS often live in fear of such crass misunderstandings by society and some doctors (such as your medical advisors, perhaps) concerning this condition. The sort of cheap laugh invoked by your actor is an example and it will have done a lot of harm to the thousands of women with AIS, and their families and friends, who may have been watching.

I applaud you for including AIS as a storyline but, in the guise of popular entertainment, you have put out some material which is medically and ethically flawed. For this reason I suggest that you recall the offending episode and consign it to the vaults, along with the term Testicular Feminisation. As a women with AIS, who has recently found the courage to tell friends about the condition after many years of silent isolation, I feel that you have missed an opportunity to provide a drama about the real issues involved. Maybe you could rectify the situation in a future episode by re-visiting the experience of the young women involved.

Considering it in Context

A 46 year-old with Swyer's Syndrome (XY gonadal dysgenesis) emailed the other women

I've read and pondered over all of your e-mails regarding the ER episode. There are certainly some strong feelings that have developed over the insensitivity regarding that particular episode. However, I personally feel that the episode needs to be put into perspective. NBC is constantly in a power play with the other networks. I think one has to remember that we're not watching PBS here. Ratings are the "name of the game". Producers are paid "mucho dinero" to insure that a substantial number of folks will be watching in order to keeps their ratings intact. It's unfortunate that the episode was portrayed in the manner it was, but how "enlightened" do you think that ER writers are in the language of AIS? I dare say "not very" when a surprising number of people in the "real" medical profession fail to use the "politically correct" terminology. This is also the reason why no one wants to "come out" on the Montel Williams show, or God forbid.....Jerry Springer!

Case in point: When I needed a referral to see a endocrinologist from Blue Cross (probably the #1 medical insurance carrier), my "condition" was looked up in a code book used all over the United States. I gave the term "Androgen Insensitivity Syndrome" and was promptly told that it "wasn't listed". Furthermore, I was told that if I were to get a referral, I would need a "name" for my condition. "Uh, try Testicular Feminization", I said...... Bingo!

The AIS 44 year-old (1) emailed:

The fact that less than four years ago none of us would think to challenge a major U.S. network means we really have come a long way. We are learning confidence, self-esteem and we are surrounded by all these great women. Our ranks are growing and we are still in the infancy of our movement. I like something said a couple years ago. This is a paraphrase - "our job isn't down until we've located every AIS and related condition woman so that no one is ever left in the darkness of secrecy and shame ever again". This will only makes us stronger and mean. So let's get angry and challenge everyone that gets in our way. I know the responese to NBC that I've read the past few days make me so glad and proud that I am in this with all of you.

An AIS 39 year-old emailed:

Like just about everyone in the circle I am deeply disturbed about the treatment they gave AIS. I think we are not overreacting in the least, and I think that it is critical that we contact NBC and the show's producers. To remain silent signifies a certain complicity with what is happening. Nothing may change as a consequence of what we write, but just writing these letters sends a clear message to the media that we are out here and we are paying attention. It is only through pressure from watchdog groups like GLAAD (the Gay and Lesbian Alliance Against Defamation) and others that there is greater accuracy and sensitivity in the media.

The media almost always gets in wrong in the beginning; it is up to us to "help" them to get it right. So I, for one, firmly believe that we would be missing a golden opportunity if we merely shrugged this off as being an inevitability of commercial television. But I also want us to be able to harness this media exposure of AIS in a positive way. I am in frequent contact with various television programs and journalists about AIS; the ER people, of course did not contact us before airing the episode. But having now openly discussed AIS in mainstream prime-time television, I am inclined to contact the LA Times to encourage them to run a feature similar to the one in the Tortonto Star. In response to the almost certain concern the Times will have that AIS is so rare, I will be able to counter that it was a topic deemed "interesting" enough for a program like ER.

Parents' Reaction to ER Episode

A Second Hand Account

The AIS 44 year-old (2) emailed:

First off, thank you ______ [fellow member] for sending the tape of the "Masquerade" episode of ER. I'm sure my father will get something out of it. It may be a bit late, but it will help him to realize that there are other parents out there who went through something like what he did with my AIS.

Later she wrote:
Before I forced my father to watch this episode.... he was acting very reluctant to dredge up all his painful memories of his own encounters with doctors. Afterwards, he expressed disapointment that the show didn't have more about AIS. It did help him open up about AIS, and he was talking about how he wished he had known more, etc.

A First Hand Account

The AIS 36 year-old emailed

Here is a reaction from a parent of a child with AIS to the ER episode. I have their permission to share it with you. They brought up the question of how I reacted to it -- and then wrote this to me. I, especially, was comforted by the uncle's reaction. Of course, it's also depressing that yet another person was subjected to extreme emotional distress in the name of entertainment:

The parent wrote:
The ER episode: Well, I was very upset by it. Not necessarily for the same reasons you were. It was exactly, almost word for word, including testicular feminization, what we were told after [daughter's] hernia surgery. I had put it to the back of my mind as much as I could after reading all the [support group] newsletters, etc. and then packing them away. It may be outdated, but it is still what is being said to people, and we were just told in August. I did correct the surgeon, when we went in for her follow up appt and told her it is now referred to as AIS. She thanked me for the correction, but since this was the first case she had seen in her 10 years of doing hundreds of hernia surgeries on children, I doubt that she'll ever have to say it again!

I had no idea what this episode was about, when I was watching it, so when the Dr. came into the lab with the results of the biopsy, I just about fell off my chair. Actually, I screamed! [Other parent] had just gone into the bathroom right before this announcement and I screamed for [other parent] to come here. That was the longest commercial break, but I needed the time to catch my breath and tell what happened. We were so freaked out, well, me especially. I was hysterical, reliving every word and emotion. I was sobbing uncontrollably. Maybe because I didn't do that the first time we were told, I was in shock, maybe I needed to scream and sob. [Other parent] thought it was a good thing that they aired that, so that it wasn't such a "freakish" thing, that other people would know what it is, and be more accepting. I didn't think it was such a great thing.

You know, I still want to keep it a secret from most people, and I didn't want anyone guessing or thinking that this is what she has. In fact, I saw my brother and his wife for the first time in a year and a half over Thanksgiving. I decided to tell him, but I didn't want to tell him over the phone, so I waited 'til then. He said, "Wow, I just saw a show about this". I said "ER?" He said "Yeah". So I asked him what he thought when he saw that show, because I was curious what an "uninvolved" average person would think when they saw that. He said, " I just thought, WOW, I didn't know that could happen" and that was it. It was just too much for me too soon. After never hearing about this and then in the span of 2 months, finding out about [daughter], the support group and then the ER episode, just put me over the edge for a few days.

A Missed Opportunity?

The AIS 44 year-old (2) emailed:

I noted lots of ads [in the commercial breaks] for prescription medicines - ER is probably popular with hypochondriacs. If only the producers had figured out who would be really paying attention, they'd have nothing but ads for Fosomax and estrogen patches. ;^)

On a more serious note, UK members wrote to Channel 4 when they heard that the episode would be screened in the UK in early 1999. They begged that if the dialogue couldn't be edited then at least there should be a Channel 4 helpline number mentioned at the end of the programme or that the support group's contact details and web address should be included in the coverage of that night's episode on the Channel 4 web site. All to no avail. It was transmitted exactly as it had been in the US, with no regard whatseover for the emotional well-being of those affected.

AISSG