Wednesday, August 24, 2011

CAIS Privilege

Although this is a topic that's been on my mind for awhile, I have never really brought up because I sense it could be highly controversial, and might even make a few of you angry.

I have been thinking about the status that women with CAIS (Complete Androgen Insensitivity Syndrome) seem to have within the AIS / DSD and/or intersex "community" (if you can call it a community). As someone with CAIS, I will include myself in this category. I feel like we are the "darlings" of the medical world and the media to some extent. If you don't understand what I mean, please bear with me.

As someone with CAIS, though I am technically intersex, and neither wholly female nor male, I am much more easily accepted as female by the majority of society, by the medical community, and by some others with DSD (disorders of sex development). I fit the paradigm physically more so than many women with Partial AIS or another DSD. What's more, I happen to fit more within the paradigm of what is considered in some circles in society "conventionally" attractive for a woman. I am very feminine, and considered by many to be very attractive. I am straight. (Pretty much anyway. But that's a separate topic.) People will label me just a regular woman with a Y-chromosome. As if my karyotype and my internal testes were more of a fluke or an accident.

Women with other conditions, who were born with anatomy that doesn't so easily fit the paradigm, who might appear more masculine than the ideal feminine paradigm, or who might be attracted to just women or to both men and women - these women bear what I think is a lot more weight in the game. Society is less comfortable with them and their bodies and their identities. And to be frank, I think these women have a tougher time.

I'm not saying that women with CAIS have it easy. We've got plenty to deal with - infertility, fear of rejection by our often straight male partners, and more. Plus, the very idea that we can so easily "pass" as "typical" women, even with our clothes off creates a different type of tension: If no one ever has to know, or would know, do we tell them? Do we have an obligation to?

But many women with PAIS or other DSD never even have that choice. And from birth they are thrust into a world where an immediate surgery or other irrevocable decision might be made for them. And that's just the beginning really.

But what was the point of this post? Really just to get your feedback on this. I am so curious as to how others feel about this idea I have about "CAIS Privilege". Is it valid? Am I crazy? Do you agree or disagree?




17 comments:

  1. I stumbled across this today and I can tell you that as an AIS (grade 6, very nearly CAIS)womanI sometimes feel it is a privilege. There are just problems that simply aren't a part of my world. My boyfriend and I don't worry about unwanted pregnancy, we don't worry about if I'm on my period, and I rarely have to shave my legs. These are pretty great perks to live with in day to day life. That's not to say that I don't have a terrible time with the conundrum of being called a man by some ignorant jerk, or the thought of what will happen when we decide to have children. I think that in the realm of intersex conditions, there are a lot of in betweens that are much more, well, in between. I'm thankful that it's my choice to disclose that I'm different.

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  2. Hi Fallon. Thanks much for your thoughts, and thank you for reading! :) I agree with the "perks"! And as you say, it's of course not always rosy and easy. So glad that you found me here!

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  3. Hi Zoe,

    I'm a mum of a PAIS boy. A lot of what you have to say is true but strangely I see a parallel with an entirely different world.

    I teach English as a foreign language. As an English speaker, I have a lot of advantages, much like a CAIS woman has. It's easier to communicate with the majority of the world, I don't have to make an effort to learn another language, I can travel anywhere and pretty much glide through life. However, if I go to Germany, and speak my native language then I'm arrogant for not trying to speak German. Despite having a degree in French, which is no use in Germany, I'm an ignorant arrogant egotistical American. As a French speaker, I go to France and am told that my accent is incomprehensible and to just speak the language I know (English).... Well, then I go to Sweden, and try the little Swedish I have, and the Swede immediately recognises my native accent and starts speaking better English than I do!

    So what is the parallel? Well, a non-English native speaker gets the advantage of learning one language (English) and is applauded for his or her efforts at communication. He or she can use that information in any country and no one makes assumptions about him or her because its evident that they don't have English as a first language. Like the PAIS dsd, for example, there are no secrets that are completely hidden away (such as the fact that though I'm CAIS or American and can speak French though not German) and you are put at risk more often. If you have to risk being laughed at often enough, you learn to be stronger, shrug off the jerks who may try to manipulate or hurt you, and take only what is important away into your life.

    So, with this analogy, do you think CAIS is easier for you in the long run? I think that secrets that are left closed inside us, can cause more self damage than the ones that we have to cope with daily.... just sayin'

    Oh, and by the way, I think you are fantastic for sharing your views. I'd like to link your blog to a website that I'm interested in sharing. It is www.dsdfamilies.org... if you want to take a peep at it.

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  4. You raise some excellent points! Is it really easier? For me I think it has been. But I'm sure that this is a largely personal issue and a variety of opinions. :)

    I've found that for me, there has been a lot of positive stuff that has come from being very open.

    Thanks for your comment and for reading!!

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  5. Hi,
    Whether I say who I am or not, is not something I am sure that I am comfortable with or not at this time.

    I have struggled for years, with being a girl, or a woman in a almost perfect looking male body.

    On the non-religous side of life, my life is incredibly rich in many ways. It is just difficult when to not harm others, I must keep this item a secret.

    I love being a woman. I love every part of my body which is and acts feminine. I do not love the difficulties of dealing with the male mind. I do not even love the difficulties in solving problems, precisely, which is more difficult for me than for the "classical" male mind. I do love understanding emotions etc. etc. etc.

    At this point in my life, I am happy with the fact of being a woman, sometimes a girl, and sometimes a mom type in a primarily male body.

    Yes, there is now an almost total lack of pubic hair. My sense of smell has declined to near zero. It it a linear progression from High School to my present age of 64. It seems as though what I supressed mentally, is superceeded by my physical body over time.

    Now, to the point. Thank-you for your question and this site. It is wonderful to accept who I am, by me. It is wonderful (somehow) to see others who have struggled with this issue also.

    I can tell those who are struggling what I went through on trying to convince myself that I was male. It simply, disordered my mind and my thinking and always seemed to work. As time went on after these numerous attempts at being "male" something would happen. Then I dealt with the "un imaginable". I dealt with, I am actually a female in a male body.

    The impossibilities of that condition are hard to handle without CAIS women leading the way. At least that is how I deal with this.

    I am also heavily Roman Catholic. Imagine the problems there. There actually aren't any.

    Intitially, I had huge problems with my condition and The Holy Roman Catholic Church, even though the church had no problems with my condition. It was my hiding it and the false assumptions I had that caused the problem.

    The church according to this forum has no formal position on PAIS or CAIS folks. http://forums.catholic.com/showthread.php?t=588527

    That was a big item for me. I was no longer this "sinner" in my own mind. I was just a PAIS woman in a mostly male body.

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  6. Hi, I started reading your blogger and could not stop. I'm a woman (PAIS) and I liked to see his point of view, because I thought it was the opposite. Born and grow as a woman "normal" and suddenly discover it was terrible. How (PAIS) eg cresccer as a woman "normal" until one realizes that something is wrong over the shock of discovery is not so abrupt as in the cases of (CAIS) because the discovery occurs at birth. Anyway do not have problems with hair and spines is a great advantage in being (CAIS).

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  7. I thought your post was interesting and is something I've not thought about before. I also have CAIS and live in a world where I'm very much a normal girl with absolutely no medical problems. With the HRT being passed off as contraception so I don't get pregnant, and the odd complaint about period pains to ensure my pretense is believable, I feel that my life is a big lie. Growing up was difficult as I knew the truth, and I felt pressure every single day to pretend I'm a normal pubescent girl. I'd spend hours every day thinking about when to say "I'd became a woman" and started my period. Now I've grown up I feel a lot of the pressure has been relieved because I myself am quite attractive (from what I hear) and look like a normal woman with a C cup. However I do look younger than I am, and I am not completely comfortable being naked in front of my boyfriend even after a year relationship. He knows about my condition and initially was very accepting, but during drunken arguments he's spurted malicious comments regarding me being a boy or something which I forgive him for because he says he didn't mean it. The insecurities are still deep inside and every now and again - today being one of those times - I sit and think and read about my condition just to feel real and true to myself. The confusion and most of the time sadness and loneliness shortly follows. I feel and fear I will never be "truly" integrated in the world. Of course I seem it and everything is happy on the exterior, but my lies are burning inside and I just want to scream especially when people are ignorant saying something like how "infertility is the worst thing in the world and life would not be worth living". But I can't say anything or blame them for being so outspoken to who they think is a group of fertile friends. And now "coming out" and revealing my true identity isn't on the cards as I've lied continuously about different things to make me feel normal temporarily, but as you can probably tell, the long-term has suffered. I have nobody at all to talk to about my condition, my parents shy away from me even at the slightest comment. I've probably spoke to my mom once or twice about it since she told me about my diagnosis when I was younger. I think my boyfriend feels uncomfortable with my true genotype, and he's said before he really wants kids and has broke up with me about it, and I just feel lost to be honest. Writing this post is a way I can voice my feelings without anyone I know seeing what I've said. In my opinion I agree with what you have said about being privileged. Yes at times I am thankful about looking normal and being able to live a life where I am absolutely fine. But on the other hand, I can't help but feel like my life is like a TV show and I'm playing up to the audience if that makes sense. I feel noone truly understands me and never will. I want to feel more like me but I don't want to be judged or gossiped about or worse pitied. Thanks for reading this and I hope I gave a different outlook on the debate x

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    1. Thank you so much for your thoughts! You are so right. I don't mean to downplay all the many difficulties you and the rest of us face. I think my post was inspired primarily by conversations with friends who have partial AIS or other conditions - who feel that we CAIS girls have it "easier" (relatively speaking). Who can really say? Not me. At any rate, I so wish for you to have people to speak with about this!! Are you a member of any support groups? There are email circles and private Facebook groups where privacy is upheld very well. I am happy to refer you if it interests you. Let me know and I will post URLs to a few. It may help you immensely to speak with others going through the same things.

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  8. I have pais but had enough male genitalia to be called male. i rank a 3 on the 1-7 scale. No one said a word to me about this. I have the mind of a woman but was trapped similar to those with have GID. By 8 years old i had developed an ulcer, by 12 I weighed over 200 pounds trying to cope. By 14 I had c-cop breasts and many secondary female characteristics. My hormones when they took me to hospital were that of a normal female, not male my size of genitalia was infinitesimally small and yet they still said nothing about it and hoped it would right itself. It never really did and now, at 48 I have nver had a relationship or dated ever. I am stuck in the middle with a male/female body, caught and very alone. I was shunned by the girls and I didn't fit in with the boys. I had no friends growing up and even into my 30's, I was alone, completely isolated, no family, and I tried to kill myself. At 38 someone said to me that I was a girl and a lifetime of knowing flooded back. At some point when i was about 10-12 I shoved that hope in a never to attain pile and gave up. At 38 I transitioned and finally at least my brain and partially female body were one. Yet today, I find it impossible to have friends, when you go weeks and years without any real interaction with anyone, you are socially inept. I would give anything to have a female body on the outside to begin with. PAIS has ruined my life and left me friendless and alone, even in a room full of people. OH to have CAIS, I can only dream!! I would not wish PAIS on anyone! And now, every church I attend I have to keep my entire life a secret. Having to tell othters that you are unable to have children pales in comparison to going decades without a hug and no chance of a life companion of any type male or female. If you have CAIS PLEASE do not complain, you are at least treated for who you know yourselves to be, I am a freak because no matter what I do, people see a male even though my genitalia is 1/2" in length and I have breasts, soft skin, a female face and small hands. I saw a picture of CAIS women and I have to say, they were all so beautiful! I am not, I pass as a woman and certainly no one knows but my life is solitary and I cannot let anyone in.

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    1. Anonymous - you are NOT a freak, but I do understand you might feel like one. I am so sorry to hear of what you have gone through. That is something that not many can truly understand.

      Are you a member of any support groups for people with AIS? There are several and I am glad to refer you if you are interested. It might be nice to just be able to share with others who have had similar experiences, and to also know that there are people out there even without these conditions, who are accepting. Let me know how I can help.

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    2. Dear anonymous, I would LOVE to talk with you. I was born with CAIS, honestly my life has been hell, however a lot of this was brought on by my own self rejection. I'm currently 31 and just recently came out on Facebook. I got so tired of hiding. Most of the response has been great, some people though just don't understand. Please feel free to email me as well.
      Creationweot at g mail dot com

      Trying to keep some spammers away.

      Also I am going to the conference in San Francisco this July. I hope and pray you get to come. Be blessed!

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    3. Wow if only I could give you the correct email address!!
      creationwept at g mail dot com

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  9. I'm trying to join one on FB. I actually diagnosed myself recently and my endocrinologist(i'm type 2 diabetic) agrees with me. We still have to do the gen testing to rule out any other issue in addition to this but it's obvious to myself and her that I have PAIS.

    I have been so brutally attacked by church people who professed love only to turn on me and wanting to change me back to male. They don't get it, I even tried to explain this condition to some, and it changed nothing. They are convinced that a nub for a penis is good enough for them to decide that I'm male.

    I think it sunk in for me finally when I found out that the GRS surgery can be immediate for me now, with a simple letter from my Endo. Not the GID hoops that I thought I had.

    Yet for my 3 former churches I've attended, I am now in need of an manipulation and an indifferent attitude from them in the guise of love. I am a loving deeply committed follow of Christ and to watch these people fall into such despicable sin is so hard to see and so hard to endure. I had one person say that I transitioned because I felt like it. That's what I'm up against.

    I've never even had a date in my whole life. I don't know what it feels like to be held by a guy and made to feel safe in his arms and I never will. My life has been one of persecution (for the past 10 years since I transitioned) and absolute isolation.

    Now i find to be accepted I have to keep my life a secret and yet for me it's such a hollow acceptance,(like winning tour de frances by cheating) I cannot be real but only a shadow of what others expect me to be to be acceptable to them.

    Problem with letting anyone in, is if they do not accept you, they run around and warn others about you and then you are a pariah. I had one church woman grab her kids into herself when someone pointed at me and told her of my transition. Then to turn to people for support only for them to turn on you as well. Thanks Zoe I wish we were FB friends.

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    1. Hi again - Let me know if you want to talk more. :) My email address for this site is aiswoman77@hotmail.com I would reply from my normal email address. Just try to avoid posting my regular email address here for spam purposes.

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    2. Zoe Thanks for putting this out there.

      Also Anonymous, I am Here as well if you need to talk.
      Creationwept at g mail dot com

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  10. hi i am a seventeen year old girl with CAIS and i can TOTALLY relate with u cais women! my sister has cais also but other than her, i have never met or communicated with another woman with the same situation...oh its just refreshing to hear from someone that struggles with the exact same thing that i do! all my life i have fallen silent when my friends start talking about their periods and that kind of a thing...i hold my breath cause im so scared they will start asking me about mine! i always try to steer the conversation away from that kind of a subject...i am blessed with loving understanding and caring parents who i can talk with about it. but i still rarely talk about it...by the standards i am considered beautiful. im a DD cup and six foot tall with strawberry blonde hair and blue eyes...but i still feel so out of it when i start comparing myself to my friends. when my little sister complains about her menstruational cramps, its almost more than i can bear sometimes! not because its annoying, but its because i wud endure the pain gladly and even joyfully if only i cud b normal! For all u "normal" girls and women out there, count yourself blessed even if u have never thought about it that you are! remember that there are others that wud do anything to have what you have! .

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  11. hey (;
    so I'm fifteen now and I know that I have CAIS for about half a year. At first it was the most terrible thing I could expect because "we" can't have children and people, that's not easy, not at all. I always was looking forward to having children and it is a shock that it won't be possible and not even my decision. But by thinking of it I actually can say that that's FOR ME the only negative aspect. I love it that I don't have to think of having my period when I go swimming, not to have the pain in this time, having clean and wonderful skin and no problems with... you know, hair anywhere. And it is even that problematic to talk about it when you can trust the people to whom you talk. My boyfriend and my best friends do know and they treat me just as before and it is a great feeling that they know. I'm feeling more female than ever before because I know: it's my decision WHAT to be and I decided to be female. Of course I have my downs, too, and I've been crying a lot over this but it's over and I'm glad to be such a special person and when I finished school and don't care about what a certain group of people think about me anymore, I will start a YouTube Channel about it for all the CAIS girls out there that cry without anyone to talk to.
    so stay strong my dears, I know it's hard, but it is what god wanted us to be.
    xox

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