' [Birth Mother] First Mother Forum: Should adoptees get a first mother's medical, cultural and social history?

Tuesday, March 9, 2010

Should adoptees get a first mother's medical, cultural and social history?

Should adoptees, or their descendants, or the adoptive parents of a minor, be given "any family history" of the birth parents that is contained in that person's adoption file, unless the natural parents specifically ask that it not be released?

We think not. We are not talking about the original birth certificate with the names of the original biological parents--which ought to be given to all adopted people, no questions asked--we are talking about ancillary information collected by the social worker at the time. We are talking about the files of the birth mothers, with data and information and commentary collected by social workers around the time of relinquishment.

Last week the New Jersey Senate voted out of the  Health, Human Services and Senior Citizens Committee a bill (S799/S1399) that would give adopted people and certain others access to the adoptees original birth certificate and "other related information." The vote was eight for; one against, and one did not vote. The bill overall is designed to give adopted people their original birth certificates' birth/first mothers have a year in which to file a veto.

I heard much of the testimony on line and it was riveting. The husband of one woman who is very angry she was contacted by her daughter made rambling plea for the records to remain sealed, railed against the state for releasing the name, as did the attorney for another birth mother, this one anonymous. We are always going to run into women I call the "crazies" in the birth mother community, women who refuse to acknowledge their children, and for them I am sorry for and at the same time angry with them. Your flesh-and-blood deserve to know who they are! And at the very least one face to face meeting!

Our longtime sisters in reform, including Judy Foster and Pam Hasagawa made statements, but it was Adam Pertman, adoptive father and head of the Evan B. Donaldson Adoption Institute, who was especially eloquent. Adam made an impassioned plea noting that it was time to see beyond simply thinking adopted people only want or need their medical histories, adding that having their original birth certificate and the names of their biological parents represented a much deeper need and should be their right, not only for their psychological health and sense of well-being, but also making them equal to the rest of us who always had this information. Because he is an adoptive dad, his words have a great impact.

While we are hugely in favor of the bill, S799, there is one troubling section that is bothersome, and that is this:
(New section) a. An adopted person 18 years of age or older, a direct descendant 18 years of age or older of the adopted person if the adopted person is deceased, or the adoptive parent or guardian of a minor adopted person may obtain from an approved agency or the attorney who facilitated the adoption any family history information concerning the adopted person that is contained in that person's adoption file, upon submission of a written, notarized request to the agency or attorney.

...."family history information" includes medical, cultural and social history information provided by the adopted person's birth parent and maintained by an approved agency or attorney who facilitated an adoption.
The problem as we see it is that this gives someone else a file containing possibly all kinds of erroneous information about the biological parents. Say someone has an affair with a married man (who has three children) and falls in love with him and gets pregnant. And it being 1966, she does not get an abortion--she waits too long, she doesn't think she is pregnant--but surrenders the child. Well, give that information to a very religious family, and who is the birth mother? A slut. And that, my friends, is my own story, all explained in detail in my memoir, Birthmark. It is one thing for me to tell this to my daughter, as I did, but another for this information--just the facts, ma'am--to be passed across the desk by a social worker to say, my daughter's adoptive parents.

We also have heard of cases where the social workers misinterpreted the facts--someone's brother who smoked marijuana becomes someone with a mental problem; alcoholism in the family is disguised to make the child more attractive to the prospective adoptive family; a casual admission that one was in therapy could be seen as "serious psychological problems." And since the information is collected in a subjective manner by a social worker who has her own biases and predilections, anything said could be noted and written down through her filter. Mother did not cry a lot? She's cold and unfeeling. Mother cried too much? Psychological problems. Mother says she does not get along with her mother? Family history of disjunction. We have heard from some women who have seen their files; some are short and to the point; others are lengthy and full of material that sounds like gossip. You see the problem with releasing this information?

Jane, for instance, decided she would act as unemotional as possible because she did not want the social worker to think that she might search. She had it in her head that they would send her daughter far away if the social worker thought that. As for myself, I wept buckets and was surprised! Amazed! when I was informed that I could not get her information--her new name and whereabouts--myself when she was eighteen. Yeah, I was naive. Yeah, I thought the law had to be humane.

We do not want to put up a huge barrier to this bill, because it is so vitally important to open records, to give adopted people their original birth certificates, but we are not in favor of having our files, written by a social worker we may have hated, simply released to our children. And we can't look at those files to update them, or correct them, or remove extraneous and false information before they are given out. The files, remember, have information not only about first mothers, but also other family members, and whatever a birth mother may have told the social worker about the father.

In fellow blogger Jane's case, her file was redacted by a social worker 20 years later when it was given to her daughter. So it was not just what was taken down at the time, but what someone thought should be released many years later.

We have worked with Pam Hasagawa for decades, have written numerous letters in support to NJ legislators, but we hope that she and the others who have worked so hard to open records will take our concerns into consideration and consider changing the bill to unequivocally give adopted people their original birth certificates, just as non-adopted people can obtain, but to exclude giving out files--our files--with information about the birth/first/biological mothers without their consent and right of first approval.
 For a previous post that touches on these same issues, and the problems that releasing such information may cause, see Jane's blog: A Right To Human Identity Doesn't Go Far Enough. Our thanks to Mirah Riben for bringing this section of the bill to our attention.


  1. Isn't it curious that the two people who were representing "birthmothers" were both men? Maybe I'm just being sexist...

  2. Can I ask a stupid question? I mean I know it is going to be perceived as stupid but I am genuinely asking it. And I get that as an adoptive mother my vision is skewed - not because I do not wish to understand but because I have not been in your shoes. I get all that but here is my question - why would it not be reasonable to come up with some system that would allow for a first mother who does not wish to be found to say no please do not release my name. etc while allowing all other records to be unsealed? I realize that there would be some adoptees who are very disappointed and that may not be fair but... I don't know it seems like if they really do not want to be found isn't that their right? Okay, please forgive my ignorance - I'm truly just asking and not being obnoxious - please know that.

  3. I am not in favor of this bill for many reasons, and I am very sad about that as I have been involved in adoption reform in NJ since the 70s and have the deepest respect for Pam as a woman of integrity and goodness. Much as I love Pam, though, I cannot support this bill.

    I agree with you about the section on medical and agency records, that is not a part of access to original birth certificates. Nobody, adopted or not, has a "right" to that kind of information about their parents. Personally I would not care what records about me were given directly to my son, but I do not like the idea of them being kept by the state where any number of people would have access to my personal history. Including that piece further muddies already murky waters.

    This is not an "Adoptee Birthright Bill" as it is erroneously advertised, because it does not grant a right to their own OBC to ALL NJ adoptees. It is a "mother, may I?" bill because it gives birthmothers the right to veto the release of information to their adoptee. A "right" either is or is not. If you need someone's permission, it is not a right but a favor.

    This bill has been deformed beyond recognition from the clean bill we fought for for years. The compromises have NOT satisfied our enemies, who block us just as they always have with the same old tired shit. It is not worth it to pass something/anything. I hope this fails and a clean bill comes back next time.

  4. Does anyone have this "birthmother"'s name who protested against opening the records? I have said it before, and I will say it again. Social workers and Adoption Agency owners and employess LIE like this and misrepresnt who they really are all the time. They do it offline too-I have had employees from the Agency I was Adopted from and the owner of it tell me on the phone they were Adopted-which was a baldfaced lie. And that was in the early 1980's, so this is another aspect of the manipulative game they are continuing on-on the internet it is incredibly easy to do this and it happens every day in forums, bulletin boards, chat rooms and even in Bloggerland. I agree that social workers also make up or twist facts to benefit their agenda, and I agree that part of the bill is disturbing, but the medical industry does the same thing. This is why patients are never allowed to see their own file in the doctor's office. Nurses and even a creepy MD make mean notes. I snuck a peek at my daughter's file one time and saw a rude remark. These comments show just how arrogant immature morons with power postitions in the United States really are. I think it should be pushed that the wording of this bill be changed. And now that the Adoption community is aware of even more lies that social workers tell, in our files, the word needs to be spread around like wildfire to warn Adoptees to take what is said about Real Mothers, with a huge grain of salt.

  5. To UpstateMom-
    because if there really is such a thing as a "birthmother" who does not want her child to know who she is, then that is CHILD ABUSE. And for the adult Adoptee who goes through that hell, it is emotional and psychological abuse, which should not only NOT be honored by the government and society but be a lawsuit thrown in a "birthmother"'s face at the very least for personal injury. Not letting your child know who you and the rest of his or her bloddline is, is one of the cruelest things any person can do to another. It is also a form of mental TORTURE.

  6. We do know who one of the birth mothers who wishes to remain anonymous is...she has that obnoxious website that we have written about before: The Wacky Website of a Woman in Hiding (from her daughter)

    We at FirstMotherForum.com want to give adoptees the unfettered right to their original birth certificates, with no one--no birth/first parent--allowed to object. It is the right of anyone born to have full and complete knowledge of who he was at birth; however, giving out subjective records, that we have no right to read ourselves is a problem. Dear Upstatemomof3, you sound like you are doing your best for your children, and am glad you are reading here.

  7. I'm torn. I do think adoptees should be able to get their OBC's -- and I'm against any possiblity of veto. As someone who has very little medical info, this is something i would really like, so I have a hard time seeing that denied. However, I can see the issue of not wanting truly personal information out there, and I honestly can't understand why moms themselves would not be allowed to read the info in the files. The whole thing is just a mess, isn't it.

  8. Here is a news story on whacked out bmom and her lawsuit. http://poundpuplegacy.org/node/34393

  9. OBCs are fundamental to full citizenship, which means they are (or should be regarded as) an unequivocal right.

    However, as Maryanne explained, no-one has a right to their mothers' medical social and cultural histories.
    This information is personal to the individual. Of course, it may be shared voluntarily by the mother if there is a reunion.

    I think its important to keep in mind that reunion is a separate issue - though the opponents of open records actively encourage the public to conflate it with the fight for OBCs, in the same way as they try to use the issue of medical records to obfuscate and confuse.
    Thanks to the internet, reunions are happening all the time, as well as information being shared.
    And all this without 'without benefit of open records'.

    However, the fight for OBCs is NOT about medical records, It is NOT about reunion.
    It is about equal rights, dignity, respect, personal identity, and putting an end to discrimination on the most fundamental level.

    For those who aren't already convinced, don't be conned.

  10. Politicians love to muddy the waters.

    The majority of adoptees DO NOT want bills that have all these unnecessary disclosures. It is an attempt to turn birth parents against adoptees.

    I want my original birth certificate. If my biological parents want to give me medical information or not, that is their decision.

    Keep in mind: The adoption industry has a lot of politicians in their pockets. Don't think for one second that this crappy bill wasn't the industry's machination.

    Natural mother, biological mothers, first mothers, whatever you call yourselves: Adoptees do not want to strip you of your rights, THE INDUSTRY DOES. This makes a battle perfect for the headlines: "Birth Mothers Against Open Records"....

    Don't buy into this crap anymore, please. Adoptees are not your enemies.

  11. Lorraine, if they just gave people their OBCs--no conditions--there would be no need to promise these other things which, to be honest, don't even seem legal and take the focus away from the principle: equality.

    Upstate, the OBC has the names on it. Since everyone is entitled to his or her OBC, it's a moot point. First parents have no right never to be contacted by their own children; however, they do have the right to refuse contact once contacted.

  12. My feelings on this are mixed, as well. I don't believe adoptees should be denied whatever medical information is in the file on one hand; but I do understand the privacy issue. This arguement makes more sense than some other ones I've read that state adoptees could use erroneous or incomplete medical information to sue their mothers. Personally I think that's ridiculous. While I totally support an adoptee's right to their OBC, it's a sticky wicket when medical info is included and one that could end up affecting all kinds of other aspects.

    As a search angel, one of the things I do is advise both mothers and adoptees to attempt to get as much non-id as possible to conduct their search. I realize that searching is a diffferent issue than the civil right of adoptee's to their OBC, but much of the information that is given in response to non-id requests is the social background of either the first mother and her family or the adoptive family when mothers are lucky enough to get it. If it's going to be cut-off for adoptees because it's now a privacy issue for mothers, I can guarantee that agencies will no longer give non-id to mothers about their child. I am not discussing medical here - but the social and background information. It seems to me this issue of what should be private and what should not could snowball into giving those of us in closed record states even less information than before.

    And I agree that it's often old or erroneous information - in my case when I received my file from the agency and read the social worker notes, I was appalled that even though I had consistently said during my pregnancy that I wished to keep my son and I knew I had been asked to sign a surrender form while still sedated, the notes in my file stated that I had wanted to give my child up all along!! The sw clearly lied and duped me out of my child. I would never have wanted my son to see that without my explanation.
    That's why I have a problem with mothers who would deny at least medical history. Not not only do I believe they could be held liable for any of that information, but in my opinion they have a moral obligation to do so.
    So why not just provide at least family medical history whether they want contact or not?

    But it should NOT be mandated that mothers who do not wish contact or wish to have their names removed from the OBC should HAVE to provide . It really does not have anything to do with the civil rights of adoptees. I do believe it's a moral obligation and I have no respect for mothers who would deny at least that information.
    I have hated watching this issue become so devisive when it's really something that needs discussion and clarity when submitting language for open access bills in the future. JMO

  13. for those of you who don't know, the ferret-faced guy who got up claiming his wife was raped at knifepoint for 1 1/2 years is my maternal source's husband. (I guess maternal source because she likes that or biological c-word, which I'm not going to use). His 'testimony' is 2nd hand, at best. He testified that my maternal grandmother was raped. I highly doubt she asked him to say that to the senate nor took him into her confidence. The only consistent thing thru all of his testimonies, letters to papers, tv interviews and website is that SHE was/is AFRAID of HIM. She didn't want HIM finding out about me.

  14. I do feel mothers have a moral obligation to provide their surrendered children with as much medical history as they can, and to meet them at least once if the adoptee wants that. I have little respect for mothers who will not do either of those things.

    But that is all personal search and reunion-related stuff, not the business of the state and nothing to do with OBC access. It is indeed unfortunate that these separate issued have gotten mixed together in bad bills, and caused dissension between mothers and adoptees. But those who support these bills should have seen that coming when they agreed to these provisions. At least one of leaders of the NJCare group is a birthmother.

    I do not think the fear of being sued by our kids is a real one, but the fear of the state asking medical history it has no business asking for is.

    The best way to go with legislation is "keep it simple, stupid". OBC access on request at a small fee to all adoptees, no exceptions, just like it is for non-adopted people. The more you compromise and complicate, the worse it gets.

  15. I received a lot of non-ID from New York State. Whether accurate or not, there were some personal things about my Momma that I would have gladly not known in return for something as simple as the STATE she was born in.

    So, my perfect bill would include:

    1- OBC access for ALL adult adoptees, adoptive parents of minor adoptees and the adult descendants of deceased adoptees. Basically anyone who can get a non-adoptee's birth certificate should be able to get an adoptee's original birth certificate. No special laws needed.

    2- Optional contact preference form. I'm more interested in this as a way to shortcut any search and reunion should both parties want it. A no contact preference also puts the adoptee on notice that contact is not wanted.

    3- Optional family medical history with a suggested, not mandated, form.

    4- Allow first parents to personally review and correct/edit/redact their files, if they wish to.

    At least one problem:
    If the first parent does not request a review of her (or his) file - what then? Do you release factual information (dates, places) the adoptee would need to search? Do you release LIMITED family medical history?

    I'm also interested in how people feel about adoptees contacting their adult siblings or other bio family members. How would your opinion change if the first parent was (a)deceased, (b)could not be found, or (c)rejected contact?

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  17. And P.S.-I am not talking about a woman who was raped-BUT, since it is not the child's fault, the child should have information about who his or her Mother is-and see a picture-it is not fair to punish the child for an act they did not commit-as far a woman who conceive due to rape well-I think that beautiful film "Little John" holds some answers.

  18. Now I have to ask a question, because I don't understand something-Elaine-was your birthmother raped by your Father? I'm sorry I have to ask this, but I am not seeing it written anywhere if she was or she wasn't. If she wasn't then God freekin damn I feel so sorry for you-my blood runs cold and I feel numb.

  19. Kitta here:

    I am in agreement with this post.

    And I am in the situation similar to Lorraine, that my child and I were re-united for many years until his death. However, I do have grandchildren from him.

    Agencies counseled pregnant women in confidence, and yes, confidentiality did exist with regard to the counseling. There were laws that covered the counseling that pregnant women received from agencies. The counseling was considered to be "mental health services" and it was to be treated the same as services provided to psychologist's patients or marriage counselors' clients, or even psychiatrists' patients.

    In 1967, I asked my social worker, an LCSW, if my counseling was confidential, and she told me about the mental health counseling laws. She also told me that no information about me would be released except for a physical description.

    Mothers should be told that descriptive information about them can be released. They should have the right to tell the agency what can be released from the file.They can ask the agency for a copy of what is written about them, and ask to redact the file.

    As for medical history, that is private, unless the mother has consented to its release, knowingly. I think that agencies today do tell surrendering mothers that medical information will be shared with adoptive families. The mother should also write and get a copy of her medical file from the agency.

    I have a copy of my medical file from the agency and it is filled with erroneous 'information"...such as "information" about my child's father & family who were not there and never met the doctor. It is also filled with extremely personal and private female information that I would never have wanted my male child to have read, under any circumstances.

    Nor does any of this female private information have anything to do with the health of any of my descendants.

    A mother should be able to redact her medical file. No one should have to be violated by having her medical records distributed to her descendants endlessly, for generations, while people who may actually know her(I am re-united) read about her most intimate parts.

    Today, mothers are facing liability from potential "wrongful adoption" lawsuits, based on the precedent set by the many lawsuits filed by adoptive parents. My father, a member of the NY Bar, has told me that he believes these laws requiring medical history will make mothers liable, and they also create a problem with regard to the questions they ask for "family" medical history. How do we "know" what our family members' histories really are? We cannot see their medical records. We cannot give a "medical consent" for them. Yet we are asked, and mothers will answer.

    Their answers can be used against them.

  20. Kitta here:

    to Gaye: in answer to your question.

    My opinion is that all relatives have a right to know each others' identities. It should not be dependent on the death of a parent, or child, or even age. Other people are not so controlled.

    I don't believe in closed adoptions, either.

    And I think that rules and laws that try to control who can know whom are probably unconstitutional, like most of the whole adoption system.

    If you have ever read through any state's entire body of adoption law, it is enough to make a person wonder it there was some kind of virus at work.

  21. I am perfectly willing to tell all my kids as much medical history as I know, including the surrendered one. They let me know what is going on with them medically too. That is the way it works in most families. I have no fear of being sued by anyone as my kids are not the kind of assholes who would do something like that:-) My oldest one and I have shared a lot of information on medications, conditions and what we are doing, like exercise, to help ourselves. It has been mutually beneficial.

    I would not like to be presented a medical form by the state to fill out, and have spoken against the idea presented on a list that such a form be part of reunion. A bit cold, eh? And none of the state's business.

  22. I guess my P.S. to Carol was missed-and I wanted to say that I wasn't talking about women who are raped and conceive(who want privacy)-but still, the baby is innocent, so it is sad that the child ends up being hurt too-and because the child is innocent, pictures of their Mother should at least be given to them and her name, plus medical info-I think concerning this situation though,(pregnancy through rape) there are some answers in the beautiful film "Little John", a movie everyone should see.

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  24. Improper Adoptee said "Carolc-I don't know if you are Adopted or not, especially raised in Closed Adoption, but if you were, I don't think you would defend some "birthmother" who wanted privacy from her own child."

    I'm not sure what you are referring to - perhaps I wasn't clear? I am a first mother and said that I believe morally a mother owes medical information to their child and I don't PERSONALLY have a problem with that at all.
    However, I agree with some of the others that to mandate that medical information has to be submitted if the mother does not want contact as part of an Open Access bill - is only going to help to defeat that bill due to lack of support from some mothers and adoptees who are aware that it will hurt the bill.
    As many of the others have stated, I totally support the right for adoptees to have their OBC. To force mothers however, to provide medical history, social and cultural background info (which I agree mothers should be responsible enough to provide), should not be part of a bill because it will not be supported by many mothers who have concerns about their privacy. Hope this clarifies for you what I said. Whether you feel it's abusive or not for mothers to deny this info -we need to include language in these bills that addresses only the unconditional right of an adopted person to their OBC.

  25. I resent the notion that the release of OBC’s to adoptees could be perceived by some as a cure all in assisting adoptees to gain self knowledge. I am an adoptee who has my original birth certificate and a mother who was found and is not willing to meet me. And maybe I could be the poster child – the perfect adoptee who accepted the answer no, and didn’t go on to stalk, harass or ruin her private life – but in reality I am left with an emptiness about who I am, an emptiness that no amount of paper can fill.

    One thing I don’t understand in the debate about who “owns” the information, is that the information actually belongs to 3 people – mother, father and child. Whether or not I know that I am Irish doesn’t make me any less Irish, it only means that when St. Patrick’s Day rolls around I will stare emptily into a mirror wondering about my about my ancestry and why I am fond of a good dark beer. Whether or not I am aware that 3 generations of women before me were fraught with a battle against breast cancer doesn’t mean that I am any less high risk, it only means that my doctor will not be able to help me with early detection and that I have a greater chance of dying if I develop this disease. Not knowing that my mother cared about me, wanted to keep me if she had the choice and has thought about me every day since I was born doesn’t mean that I am any less loved by her, it only means that the absence of that knowledge leaves me feeling rejected, abandoned, in pain, and in grief.

    If adoption were practiced with the best interest of the child in mind, no adoptee would ever be deprived of their history. The truth we seek is a truth that belongs to all of us, whether a mother (or father) chooses to share or hide in secrecy. While I love the thought of every mother sharing such truths with their grown child upon the event of reunion, not all of us are fortunate enough to find open arms. And the best little scraps we get to walk away with, are whatever crumbs some social worker is willing to throw our way. Please don’t deprive us of those last little bits.

    1. I appreciate your articulate response. I think it is morally reprehensible to without biological data from genetic offspring. Were that data available, some might have logically chosen to adopt rather than procreate. Myself I must wonder whether my bio mother conceived with her brother, father, grandfather or uncle or on some nuclear above ground Downwind, possibly observing an above ground mushroom cloud whilst conceiving me. And I understand her reluctance to meet, and I have had nightmares of earlier generations tumor treatments for my child's rare jaw tumor, and others genetic neck tumor (after all those hospital visits, what in fact the bio relations if still alive at all might they even look like?) it seems only fair that dogs, come with a pedigree of a breed, and so should we. Knowledge of Racial origin ought to be a birthright in America. Knowledge of heritable and family history medical conditions ought to be a birthright. I am considering giving a year of my annual salary to pursue lawsuit on the rights of all Americans on their own biological genetic data. No bio genetic donor or relative ought to have the legal right to make slaves or indentured servants of by withholding origin, genetic and D n a or genetic test data from their genetic line.
      Further, if I have my way, I will broadcast data from all genetic tests and data public ally with their name on it. False power from withholding knowledge from genetic relations ought not last long in a transparent, data driven world.

      As an adoptee, I possess no interest whatsoever in any relationship or encounters with a bio parent. In fact I have would actually rather die than share my children or grand babies with my biological mother as an adoptee. Chosing to withhold valuable medical data from ones gene line is reprehensible, and should be criminalized in a fair and decent world. In fact, if another of my children or myself have another tumor, which was a known part of the bio parents medical history which they chose not to disclose when asked, or refused to respond, I think there's s case where I could sue for damages. And publicize it, as the execrable behavior of an ancient dishonorable generation filled with a stubborn greed through which they withheld life saving data.

      Anonymous for this

  26. @ImproperAdoptee -- my deceased birthfather's family told me that he thought that they were going to be married. My birthfather's mother paid for the maternity home - after, according to them, they asked about raising me - birthfather didn't have any rights back in 1964.

    At 7 months pregnant, my non-id info states that maternal source & her mother came into agency and still weren't sure what was going to be done about me.

    Rape was never mentioned until her husband got involved. Then it was statutory rape (don't know law for 1964), then it was raped for 1 1/2 years -- now, it's raped at knifepoint for 1 1/2 years.

    Birthfather is dead, so he can't tell us his side. Maternal source's husband was nowhere near at the time. He has no first-hand info. But yet, he still testifies to his skewed 'facts'. Now he told the Senate that my maternal grandmother was raped. Somehow, I don't think she took him into her confidence nor asked him to testify to anything about her. But, he keeps testifying and they keep taking it as 'fact'.

  27. Hey, once again, we were just away from the computer...my husband, Anthony Brandt, has a book just out from Knopf:

    The Man Who Ate His Boots: The Tragic History of the Search for the Northwest Passage, and we were in Manhattan publicizing it. (He will be on NPR on a weekend coming soon) He's going on a book tour next week: Albuquerque, Boulder, Denver, San Francisco, Portland, Seattle. Check your local bookstores and do drop in! And say hello. He may need the company.

    Yes, I guess this is shameless publicity, but I meant to explain why comments were not posted.

  28. kitta here:

    "Whether you feel it's abusive or not for mothers to deny this info -we need to include language in these bills that addresses only the unconditional right of an adopted person to their OBC."

    Access to OBC is basically about access to a Vital Record.

    I agree with you, that throwing in other access provisions like access to social worker's counseling notes, which are protected under the mental health counseling laws, will only muddy the waters and cause people to withdraw their support.

  29. Kitta here:

    "If adoption were practiced with the best interest of the child in mind, no adoptee would ever be deprived of their history"

    The very purpose of adoption was to erase that history, so that adoptive parents could raise the adopted child"as if born to" them.

    If adoption practice truly had children in mind, most children would stay in their original families. If an adoption was really necessary, documents would not be falsified, and the final adoption decree would stand as the legal proof of custody and relationship in the adoptive family.

    Adoptions would be open and information would be shared between adoptive parents and natural family members, just as much as non-adopted families do(or sometimes do not).

    But, the state would not be dictating to family members that they have to supply private information to the state, and at the same time, that they cannot know who certain relatives are.

  30. From Improper Adoptee(who is too lazy to sign in LoL)
    Carol-I think I misunderstood what you said ( I have a form of dyslexia and it causes problems sometimes)-I guess I thought when you said you understood the privacy issue for Real Mothers, you meant you felt they had a right to deny contact if they wanted(which I will always think is wrong) but after I re-read what you wrote, I think you meant you understood the privacy due to the faulty part of this preposed bill, is that right? I'm sorry if I misunderstood you, and I am sorry too what that social wreaker did to you-that was dirty and underhanded-the issuses concerning this bill confuse me, because I am not savvy with political jargin-I am still trying to learn-as I said before, I know first hand how Adoption Agencies lie as I was a victim of this for a long time, and we Adoptees need to spread the word that what we might read about our Mothers is most likely a lie due to bigotry towards them-
    Elaine-again, I am JUST SORRY for you-your birthmother makes me really mad-and I wondering if I could ask you another question-is the your Grandmother was raped story supposed to support your Mother's behaviour or something? As in your Grandmother didn't want to be around your Mother? I don't understand why her stupid husband thinks your Grandmother being raped has anything to do with your Mother denying contact-"maternal source"-beyond pathetic...
    Kitta-you are such a sweetie-your story breaks my heart. I am so sorry again about your child. Hugs.
    Lorraine-I didn't know your husband was an author(I didn't know who your husband was at all, LoL). That is cool beans, no wonder you guys got married :) His book sounds really interesting and I love the tittle. Only wish you guys were signing closer to me :( Next time I go into Barnes and Noble I am going to looke for Anthony's book.

  31. Just to make unequivocally clear, we are in favor of adopted people being able to get their original birth certificates whenever they want them; in fact, since all closed adoptions are a violation of an individual's right to know his or her identity, we would give that person the right to that piece of paper at any age, if they were adopted in a closed adoption. We are so in favor of this, and have been for years, that I may have not made this clear in the original post, which I have since edited to include this.

  32. Also: I forgot to include a reference to a blog post of last summer (June 16/09) that Jane wrote on this subject, and the problems that releasing information collected by the social worker can cause. For what happened in Jane's case, please see: A Right to Human Identity doesn't go far enough

  33. No problem Improper one...

    I have trouble following some of these discussions as well.

    Some of us have been called out by a couple of mothers for saying "I believe adoptees should have unconditional, unfettered access to their OBC's" because they assumed that we didn't understand the mother's right to privacy.

    I do understand but just don't see it as a liability issue. To me it seems unrealistic to think that even if an adoptee attempted to sue their mother for what they perceived to be incorrect or incomplete medical information - it would never get to a courtroom because who's to say how much medical info was shared with her in her family?
    How could anyone prove that she deliberately withheld or provided incomplete info? It would be perceived as totally frivelous.

    I just think we have other things to worry about to get OBC's unsealed in the remaining states and these discussions help us write better bills...

  34. I don't understand why any Adoptee would sue their Real Mother for inncorrect or incomplete medical info-I would never do that. I mean after all, she isn't responsible for what is initally written down-I would however think it appropiate to sue the social worker, the state she is licensed in and the Adoption agency she is/was affliated with.

  35. Would an adoptee sue his mother due to inaccurate medical info? Extremely unlikely.

    Would certain adoptive parents or agencies sue a mother for inaccurate medical info? Sadly, I see this as a real possibility. (Disclaimer: not all adoptive parents, so please don't jump on me. Just the ones who are a tad bit crazy - like the couple who testifed in front of their son that they never would have adopted him had they known his mother had a history of mental health problems, after which he killed himself).

    I vote "yes" on completely unfettered access to the OBC for both adoptees and mothers; "no" on state mandated medical disclosures.

  36. Whoa! Maybe--can you tell us more about that story mentioned in your comment? Please.

  37. See Juman v. Louise Wise Services:

    "According to Juman v. Louise Wise Services, 174 Misc. 2d 49; 663 N.Y.S.2d 483 (N.Y. Sup. Ct., 1997), on May 13, 1966, Louise Wise Services facilitated the adoption of an infant, who was later named Michael Lloyd, to the plaintiffs. At the time of the adoption, the defendants informed the adoptive parents that Michael’s mother “was in her 30’s, did not have a very good relationship with her mother[, had] won a scholarship to a well known college and finished two years of it. The mother had been going out with someone seriously, but he died suddenly of a heart attack and so she could not marry him. She became pregnant quite soon after. She said that if her boyfriend had not died she would not have become pregnant. This shock led to some emotional difficulty and she later sought professional help for it. The baby’s father was white Jewish, but in character was not one of lasting quality.

    The plaintiffs accepted the information provided as absolute truth. Subsequently, Michael developed a history of psychological disorders for which he had to be hospitalized several times. Included among these disorders, was the mental illness of schizophrenia. At age 28, Michael launched his own investigation into his family history. This investigation resulted in his finding the location of his natural mother’s brother. After lengthy interview with this brother, Michael learned that his natural mother had an extensive history of mental illness, which included a frontal lobotomy before Michael’s birth.

    Michael’s adoptive parents contend that had they been aware of the true facts surrounding his mother, they would not have adopted Michael. They therefore are seeking the cost of Michael’s medical treatment over the years, approximately two million dollars. The defendants contend that the bulk of the information could not be supplied because it would involve a disclosure of sealed adoption records. The court affirmed that the principles of fraud under common law were applicable to adoption and that the adoptive family could bring suit against the agency for wrongful adoption."

  38. Kitta here:

    "I don't understand why any Adoptee would sue their Real Mother for inncorrect or incomplete medical info-I would never do that. I mean after all, she isn't responsible for what is initally written down-I would however think it appropiate to sue the social worker, the state she is licensed in and the Adoption agency she is/was affliated with"

    To Improper: this is why the agencies really want the mothers to write the medical history down themselves...that way, the mothers can be more easily held liable for inaccurate, incomplete or even unknown history, which some adoptive parents may claim that mothers "should have known at the time" or "lied about"...or withheld.

    Sometimes we even forget...which is not a crime..but what if we get held liable for forgetting..

    Most adoption agencies are now requiring surrendering mothers to submit lengthy written medical histories...California requires mothers' to fill out a 10 page booklet on family medical conditions...for example.

    This is why state mandated medical histories supplied by mothers will lead to "wrongful adoption" lawsuits like the many that have already happened. The Louise Wise Agency was sued in the 1990s when the adoptive parents got a baby whose mother was schizophrenic, and the grown up adopted child developed schizophrenia.The agency did not tell the adoptive parents about the nat.mother's schizoprhenia because that information was protected medical privacy, and because in those days(the 1960s) mental illness was not believed to be genetic...even today it cannot be proven genetic.

    And, sorry to say, but some adopted people would sue their nat. mothers. About 10 years ago, I received a call from an adopted person who asked me if her adopted brother could sue his natural mother for 'child abuse" because she relinquished him. I asked her to define the child abuse.

    She said" he says she ruined his life by relinquishing him for adoption."

    I knew this adopted woman, she lived near me, and I knew this was not a crank call. I was able to determine that the brother had been relinquished at birth. There was no known abuse, according to the sister.

    She said"He has always been unhappy. Now he wants to sue her."

    I told her that relinquishment was not a crime(much as I dislike it), not negligence, and that it would be hard to prove negligence when the gov't was trying to promote adoption.

    But health matters are a different issue, entirely, and if adoption agencies can be held liable for accuracy/completeness of mothers' medical information, the mothers themselves surely can be,also.

    Also to Improper: thank you for your kind words about my boy. I miss him terribly. He and I used to play that Pink Floyd song together,"Wish You Were Here."
    that is how I feel..how I wish, how I wish you were here.........

  39. Here's an article about the Juman story. Note that he attempted suidcide mulitple times in the past and the coroner ruled the death an accidental overdose due to build up of various medications.

    This case is heartbreaking in so many ways.


  40. And who would these Adoptive Parents sued if they had their own schizophrenic child, God?

  41. Improper, that is exactly what I was thinking. I guess they could sue themselves or their ancestors for passing on a bad gene.

  42. According to the NY Times article, Michael's a-parents went against their own better judgment when they agreed to follow his wishes and sue Louise Wise.

    "To win such a lawsuit, (Phyllis) knew, she would have to swear that she would not have adopted her son had she known his medical history."

    It seems to me that this was something Michael must have wanted and expected her to do. The article states she was out-voted, and that Michael asked his a-father to put pressure on her not to renege on her decision.

    I hope I am not "jumping" on anyone when I say that while there is more than enough pain in this story to drive anyone mad with grief, I don't think it's entirely fair to describe these adopters as a "tad bit crazy".

    It appears that they did only what they were begged to do, and even if they had refused, the outcome for Michael would not necessarily have been better.

  43. I think it is a great thing that the Juman's sued Louise Wise agency for lying to them and witholding information about severe mental illness in their son's birth family that could have been useful in getting him better treatment earlier had they known what to look for. The agency was at fault. Do some here think the adoptive parents should not have sued them? I find that hard to understand. It was lawsuits like this that eventually brought down one of the most heartless, corrupt agencies in this area.

    This case has nothing to do with adoptees suing their own mothers, I am not sure how it got mixed in here.

  44. kitta here:

    "To win such a lawsuit, (Phyllis) knew, she would have to swear that she would not have adopted her son had she known his medical history."

    Thak you for this research from the Times.

    No matter what the situation, adopted people, and adoptive parents at the time of adoption, should be entitled to the medical history of the *child.* However, the legal issue in the Juman case was not the child's medical history...it was the natural *mother's* medical history.

    Michael was an infant in 1966, and he had not been diagnosed with schizophrenia at that time.

    The natural mother's medical history was protected by medical privacy laws. This is private information.

    Back in the mid-1990s, when I was doing public relations work for a CUB group, I received a call from a social worker from the Louise Wise Agency. He was looking for Carole Anderson, the attorney who also was on the national board for CUB.

    The Worker told me"Back in the 60s we did not know that schizophrenia was genetic."

    I agreed with him.There is no way that the agency nor the mother could have predicted, nor suspected, nor known the outcome for Michael. The blank slate theory was in effect in those days, not just for adopted people, but for everyone.

    Even today, there are cases of one identical twin with schizophrenia and the other showing no signs of illness. So, even inherited identical DNA does not guarantee the disease.

  45. As a reunited mother who has given all of her info to her son, I am a bit perplexed about some of the posts here. My son's adoption took place in Ontario, Canada.

    For example, why shouldn't an adoptee know what their ancestors social history is?

    Many Native North Americans were told that they were of French or Italian descent so that this information would throw the adoptee off track in a search - I have come across that situation a number of times when I have been reuniting people. Some of the search resources are different for these adoptees.

    It is important that if this information is passed on that it should be accurate.

    However, as rightly pointed out by some, social workers distorted the truth (as in the example above) to make adoptees more adoptable and to put even greater barriers up in stopping mutually consented to reunions.

    In my own case, the social worker wrote out a pack of lies about me - things such as not knowing who my son's father was in order to put off my son from wanting to meet me. It almost worked.

    Fortunately, I was able to find my son and got him to listen to my side. He was shocked at how many lies he was told about me.

    Our reunion goes well despite the wrong pre-conceptions that my son had about me originally.

  46. Kitta, concerning the Juman case, the issue is not what was known about mental illness in the 60s, but that the agency LIED, fabricated a story about the birthparents that was not true. They could have said nothing, which would have bad enough, but they compounded a bad situation by making up a false story of healthy parents with no serious problems.

    And they never tried to correct their lie, even when it became known that there was a hereditary tendency to schizophrenia. I have friends who were asked in the early 80s about family history when it was discovered that their teenaged son had this awful disease.

    A lobotomized mental patient with severe schizophrenia, even in the 60s, was not someone with a few debatable emotional problems. This was not some social worker's subjective interpretation of the mother's emotional state. This was and is a very serious medical condition that people adopting that child should have been told about before adopting, so that they could either decide not to adopt, or be prepared to deal with it if they did adopt that child.

    No, not all schizophrenics pass on the disease to their children. Nor do all diabetics, but in both diseases there is a strong hereditary component that makes it more statistically likely that children of those afflicted might develop this disease.

    How could the agency be protecting the mother by lying when the mother was anonymous? Nobody was ever supposed to know who she was. They lied to unload a kid that perhaps would not have be marketable had his true history been known, and both he and his adoptive parents were harmed. This is criminal. That social worker you spoke to was covering her ass and the agencies.

  47. Kitta said, "The Worker told me "Back in the 60s we did not know that schizophrenia was genetic."

    It is true that in the mid 20th century schizophrenia used to be blamed on bad parenting skills, poor mothering in particular.

    "Even today, there are cases of one identical twin with schizophrenia and the other showing no signs of illness. So, even inherited identical DNA does not guarantee the disease."

    Indeed, it does not guarantee it.
    Nevertheless, heritability is now recognized as a significant factor in the disease.
    Twin studies have shown that if one identical twin has schizophrenia, there's an approximate 30-50% chance that the other will have it too.

    Interesting article:

  48. What Maryanne said. The agency lied.

    Apart from anything else, Michael's mother's illness was the reason she was unable to raise him. Of course the agency had an obligation, both legal and moral, to reveal that to any potential adopters, as well as the truth about his father.

    Science Daily (Mar. 2, 2010) — Offspring of two parents with schizophrenia or bipolar disorder appear more likely to develop the same illness or another psychiatric condition than those with only one parent with psychiatric illness, according to a report in the March issue of Archives of General Psychiatry, one of the JAMA/Archives journals.


  49. kitta here:

    "Apart from anything else, Michael's mother's illness was the reason she was unable to raise him. Of course the agency had an obligation, both legal and moral, to reveal that to any potential adopters, as well as the truth about his father."

    That all depends on what the adoptive parents' contract said, and what the laws were regarding the privacy and medical protection of the natural mother and her family history. There is no legal right to know someone else's medical history, even if you are related to them.

    If she didn't consent to have it released,the adoptive parents didn't have a right to it.

    However, I agree that the agency had no right to lie. I never said they did. The worker I spoke to didn't work there in 1966.

    I agreed with him that schizophrenia was not known to have a hereditary component in 1966. I have a cousin who is a diagnosed schizophrenic, and she was diagnosed around 1966. No one in our family had any idea, at that time, what caused the disease.No one else had the disease.

    I always gave every bit of my own history to my son. I would have been happy to have shared medical history directly with my son's adoptive family, but I didn't want the agency handing over my medical history to them,and now that I actually have my agency medical file, I am even more concerned about medical privacy for mothers and their families.
    My file is filled with inaccuracies....and outright lies...written by my ob/gyn doctor himself....in 1968.....All the more reason why we should have control over gets our medical information and what it actually says.

  50. kitta here;

    "And who would these Adoptive Parents sued if they had their own schizophrenic child, God?"

    Improper, that is a good question. My aunt and uncle suffered a lot of guilt when my cousin suffered a mental breakdown in college, in 1966, her senior year. She was then diagnosed with schizophrenia and has spent the rest of her life in treatment. She has been hospitalized a number of times. She developed diabetes due to one of her medications.

    She is now in her mid-60s and has a kind of dementia that I have been told is related to the schizophrenia. It is very sad. she was very bright. She and I grew up together and were very close.

    My aunt and uncle did everything they could to help her.

    Yet, if my aunt and uncle had adopted her,instead of giving birth to her, I guess they would have had people encouraging them to sue.....or even to return her to the agency....

    Instead, they just did what they could and loved her...with no help from geneticists or blood tests or lawsuits for "wrongful life"...(those lawsuits exist too)

  51. kitta here:

    "For example, why shouldn't an adoptee know what their ancestors social history is?"

    Re-united mother, you mention being from Canada and that adopted people don't always know their ethnic background. I absolutely agree that adopted people *should* be given their ethnic background.

    Here in the USA that would be considered a basic part of heritage,but not exactly "social history of parents."

    But not everyone knows the ethnic background of all of their ancestors. It is assumed that we do, but we don't always, because some of us come from families with many different ethnic backgrounds, and not all of our relatives have been forthcoming about all of their background information.

    And again, mothers who reunite will often find that their children were given incorrect information by the adoption agency. My son had gotten the "non-identifying information" on me and the ethnic background was incorrect.

    I know I told more complete information than what they gave him. this is another reason why direct communication is better than having a third party involved.

  52. Even in the 1960's, when views in the U.S were more in favor of a blank state view of human intelligence and reason, the ancient and pervasive belief that some aspects of human behaviour, including mental disorders are innately determined still held respectable credence.

    So I find it hard to believe that there was no, none, nada suspicion at all that Michael's mother's illness (which was not just part of her past medical history but an ongoing condition at the time of her son's conception and birth) might be somewhat heritable.

    Regardless of what the prevailing beliefs about schizophrenia were at the time, Louise Wise had a duty to make these facts known to whomsoever would raise Michael.
    Who knows? Among other things, it might have actually helped him in terms of getting earlier recognition and treatment for his illness, which seem to be important in keeping schizophrenia and related diseases under control.

  53. Kitta, the birthmother of Michael Juman was not competent to request or deny privacy. He was probably taken by the court due to her severe mental illness. She was never going to get better. There was nobody there to "protect".

    Do you really think that the adoptive parents had no right to know this? Yeah, put the letter of the law above human need and decency. That works for some people.Not me.

  54. Kitta here:

    Maryanne, then I guess you didn't really mean this:

    "I agree with you about the section on medical and agency records, that is not a part of access to original birth certificates. Nobody, adopted or not, has a "right" to that kind of information about their parents"

    The Jumans were doing just exactly that...trying to access medical records,from an adoption agency that did not have the legal authority to grant them access and no matter how painful the problem, the law didn't specifically allow them this information...even if the agency was wrong in the first place for lying and presenting a benign situation.

    Because of "wrongful adoption" there are many adoptive parents and even adopted people who think that access to our medical history through the agency is their right, absolutely. They also think that we have lied and hidden "conditions" and that we must be held legally responsible for that. And they want our "family" medical records also.

    This is not the same as personally sharing our own medical history directly with our children or their adoptive parents, which I have done with my now-deceased son.

    Michael Juman did right to try to find his mother...and located the family, and spoke to them. And got some significant history.

    yes, you are probably right about her "consent to adopt." She probably was incompetent and could not have consented to a relinquishment.

    A legal representative could have consented for her or released her medical records.

    what I do not understand is why other options were not suggested. The 2 psychiatrists did talk to each other....later when Michael was having problems.More information could have been consented to, perhaps by a family member of Florence's at that time.

    Michael found his family, and he wanted to meet his mother. He was denied. It might have helped him to meet her. My schizophrenic cousin can handle things that our family sometimes doesn't give her enough credit for.

    Meeting her seemed to have been his main goal, and he was denied.

    I believe in direct communication, not intermediaries, intruders, or other people interpreting for us, unless there is absolutely no other way. 'Interpreters' of any kind are rarely of any help.

  55. kitta here:

    "Among other things, it might have actually helped him in terms of getting earlier recognition and treatment for his illness, which seem to be important in keeping schizophrenia and related diseases under control".

    although prevention in many diseases is the best "cure" schizoprenia isn't understood well enough to be successfully prevented. There have been many theories about its origins, including the possibility of a 'viral trigger."

    I cannot help but wonder what it would be like to be under a watchful eye...with adoptive parents who are thinking "when is he going to start showing signs of the disease?"
    When my cousin was diagnosed with schizophrenia in 1966, my mother stated that it would have been better if she had been adopted. The reason for this statement was that my aunt had been pregnant at the time of her wedding, with my cousin, and my mother believed in the "environmental" theory. So, my mother blamed my aunt and uncle for my cousin's schizophrenia, although she couldn't come up with any specific reasons.

    If my cousin had been adopted, though, she would probably have been schizo anyway, and possibly my aunt and uncle would have been the ones tracked down like the Daybochs were. I would have been like cousin Barry, an interested relative.

    But we wouldn't have known anything to tell the adoptive parents.

  56. Kitta said "although prevention in many diseases is the best "cure" schizophrenia isn't understood well enough to be successfully prevented. There have been many theories about its origins, including the possibility of a 'viral trigger."

    I'm aware of that. I wasn't thinking in terms of prevention, but of control. There is a large body of evidence to show that detecting and treating schizophrenia rapidly, following the onset of a first psychotic episode, improves the patient's response to treatment as well as their prognosis for the future.

    "I cannot help but wonder what it would be like to be under a watchful eye...with adoptive parents who are thinking "when is he going to start showing signs of the disease?"

    Tough though that might be, I think it would be far better to be under a watchful and hopefully caring eye than to be left to struggle for years with distressing and inexplicable symptoms.
    My point though, was that this information should have been made available to "whomsoever would raise Michael", meaning not just adoptive parents.
    If he had not been adopted he would have had to have been placed in some kind of foster care situation or possibly even an orphanage. After all, his mother was not in a position to care for him, and clearly nobody from the original family stepped up to the plate.

    It was Michael himself who sought out his natural parentage and Michael himself who determined to pursue the case against Louise Wise. His sister and adoptive parents supported him because it was what HE wanted to do. I think he - and they - were right.

    Do you think that children born to parents with severely incapacitating mental illnesses are less entitled to the real facts about their history (especially when the illness is the principal reason for their relinquishment) than other people?

  57. Kitta, you never answered the question of whether or not adoptive parents should be told that both birthparents suffered from schizophrenia. It sounds like you are leaning in the direction that the agency had no obligation to tell them this and it was ok to make up lies about his background. Is that what you believe or not?

  58. Excellent post and excellent comments!

    As a mother who lost a child to adoption residing in NJ, I originally raised this issue with the NJCare Team who worked on this legislation.

    I have promised a meeting with Larry Newman, Judy et al. at some as of yet undetermined time. In the meantime, i have shared a link to this post with the hope they will read it.

    The topic id also being discussed on Facebook, as well as some absurd notion of mothers being "required" (which would be totally impossible to enforce) update medical info.

    Adoptees are having difficulty understanding that they do not deserve rights that non-adoptees do not enjoy.

    Also - as mothers who relinquished, we gave up our right to raise our children. We did not give up any other rights as a citizen of this country and have protection of private, confidential conversations with social workers at a time of great stress. Such records contain no accurate or up-to-date information and are thus of no value anyhow.

    The only way ANYONE - adopted or not - can obtain family medical and social history os to ASK their parent sor other family members. By accessing the OBC they have that opportunity and are made qua to all others.

    My mantra is EQUALITY - which means the same as, not less, but also not more!

    Glad Adam gets it!! (He will no doubt have some adoptees arguing with him about it.)

    Mirah Riben

  59. Kitta here:

    "Do you think that children born to parents with severely incapacitating mental illnesses are less entitled to the real facts about their history (especially when the illness is the principal reason for their relinquishment) than other people"

    We should leave out the word "mental" because any illness can have consequences.If the parents' illness were cancer or MS,something else with a possible, but not necessarily proven or understood genetic link, the impact would be similar.

    No one has an automatic entitlement to the medical history of their parents or other relatives. In fact, the federal HIPAA law and other past and present medical privacy laws prevent the release of such medical records..unless a consent is signed, or the law allows release.

    Parents and children should be able to share medical history themselves directly or directly with adoptive parents.

    I have already said that I agree with medical privacy unless there is a parental consent to release. Or, another way to gain access to "specific" medical information is through a court order which could be pursued with a legal action via attorney and psychiatrist,or other physician, if there is a need for medical information.

    An agency with custody of a baby who appears healthy cannot pronounce that infant as "ill." Infants who are surrendered for adoption are health-checked by a pediatrician.

    Many infants have been proclaimed "ill" at the time of adoption when they were not sick at all. That happens also.Some agencies go overboard in diagnosing "illness."

    As far as children who are born to parents with severely incapacitating illnesses being "less entitled" to the "real facts" about their history than "other people"?...

    The answer is that they already are not less entitled. No one is entitled to the facts of any of their relatives' medical conditions unless those relatives have released those medical records to them. No children, adopted or not, have the legal right to their parents' medical records or "real facts."

    To say that they do, would put their parents in the position of having to coninually supply medical records under pain of law, and would place parents in the impossible position of having to guess as to what possible conditions are in the family. What if there are/were conflicting diagnoses? What if 3 doctors say 3 different treatments are in order?

    Parents would also be in the position of violating their relatives'medical privacy.

    Parents are not doctors or geneticists. We cannot do or know everything.

    Adoption is a gamble. So is giving birth.The best way to get any information is directly from the family.

  60. Kitta here:

    "Kitta, you never answered the question of whether or not adoptive parents should be told that both birthparents suffered from schizophrenia. It sounds like you are leaning in the direction that the agency had no obligation to tell them this and it was ok to make up lies about his background. Is that what you believe or not?"

    maryanne, my first post, which you might not have read, was in agreement that adopted people don't have a 'right' to the agency medical and social files of mothers without the mother's consent. I was pretty clear. I was against the release of such information.I mentioned the 'wrongful adoption lawsuits". I posted that on March 10, at 5:20 PM...
    I have known about the Juman lawsuit since the early 90s, and I was referring partly to that case..

    I have said that it was not okay for the agency to lie and make up a story about the mother of Michael...that made her sound healthy. But, she could have been a college student like the agency described and then had a schizo breakdown.

    That is what happened to my cousin, who was just like the agency description..popular and talented and very bright..and schizophrenic...in her senior year at Lemoyne College.She and I were very close, always, more like sisters. I was a junior that year.

    The Juman case didn't change my mind about adoptive parents accessing agency files, or adopted people accessing agency files. I don't support that action, unless there is a specific consent on file, or the agency gets a specific consent, or there is a medical court order, all of which can be done for "necessary" medical information... and not for the entire agency file or entire medical file.

    Not all of our medical history is relevant to our children or descendants.

    I still believe that mothers,fathers, adoptive parents, adopted people and their natural families should be able to communicate directly with each other...and share medical history if they wish to.

    Michael Juman found his family and his mother. He was capable of doing that. But,I think the lawsuit was a bad idea. I always did. And it appears from the Times article that the lawsuit was Michael's idea.

    If he was that sick, why did the family trust his judgment...and he did die soon after...

    I was ravaged by a corrupt agency also,but we can't win by supporting lawsuits that violate medical privacy and pass liability onto natural families.

    We need more access to each other, and the right to share directly, not through an agency.

  61. The nature of Michael's mother's illness is relevant.
    It is precisely *because* it was of a mentally incapacitating nature that she was not in a situation either to give or to withhold consent.
    This is not about "continually supplying" information or being forced to release past medical history. It is about *why* he was available for adoption in the first place. Legal niceties have nothing to do with that. There was no excuse for concealing it.

  62. Wow, just wow. The world has certainly turned upside down when "adoption reformers" are defending an agency lying and withholding serious medical history of the child from prospective adoptive parents, because of "privacy rights".

    Now I am beginning to understand why some adoptees are so upset with some birthmothers. This is going in a very ugly direction where the letter of the law matters more than compassion or common sense.

  63. Kitta here:


    this is what you orginally posted:

    "I agree with you about the section on medical and agency records, that is not a part of access to original birth certificates. Nobody, adopted or not, has a "right" to that kind of information about their parents"

    And I am assuming that you have changed your mind...

  64. Kitta here:

    "It is precisely *because* it was of a mentally incapacitating nature that she was not in a situation either to give or to withhold consent."

    We are all assuming the above.

    I have already stated that if the mother could not give consent, then someone else, a legal or medical guardian, could have done so in her stead, if it was deemed to be necessary.

    Legal issues matter very much. No one is above the law, and no one is lesser than someone else.

    Reasons for relinquishment, written up in agency files, may very well be private and not subject to access by other people, even if they were adoptive parents or adopted people.

    Reasons for relinquishment have also been grossly misinterpreted, time and time again...especially when written from agency files and submitted to adoptive parents or adopted people.

    Michael wanted to meet his mother. Even after he found out about her disease, he still wanted to meet her. He was denied that. In the end, he wanted that and was never allowed that.

    I really wonder if anyone involved, including his adoptive parents, actually understood that. Maybe meeting her would have helped him more than any " treatments."

  65. I have not have not read all the comments here however Mary Anne Cohen brought to my blog concerns raised here about a wrongful adoption suit and and thought it convoluted to bring into this discussion.

    Mothers on Facebook have raised a concern that they too could be sued if it was REQUIRED that they provide updated medical info and then fail to. We live in a litigious society and too much morality is legisaltnd. What abut forcing FATHERS to contribute any information???

    What about mothers who have gone back to their agencies to report a health update and it was not shared? What about reciprocal sharing that could save the lives of a mothers' subsequent children?

    Yet WE are the ones MaryAnne calls "hard-hearted" for trying to protect ourselves from abuse. I don't think so. We relinquished our right to raise our children, we did not relinquish any other rights and deserve the same protection under the law of confidential things told to a social worker as anyone else would enjoy.

    The wrongful adoption case also proves that agencies lie and any information from them may or may not be true - yet it might contain same really nasty stuff about us that is untrue and would keep our kids from ever wanting to know us.

    MaryAnne says it's a moral issue. I agree. The moral thing is to have enforced open adoption or common adoption! That's morality! Not agencies who play God with people's lives!! The other moral thing is to allow adoptees access to their OBC and then they are on a level playing field with all others and can. As for the case you mention, I support access to the OBC for adult adoptees and foe the parents of minor adoptees for just such medical or emotional need.

    I think it very unfair to blame us for the immorality of the adoption system and adoption agencies! We did not create these problems - we are victims of them just as much as adoptees. We didn't create the problems and we cannot be asked to resolve all of its short-comings even to our own undoing. No!

    My own case is a good example. After my daughter's untimely suicide - should I have been held legally liable for not knowing at the time I relinquished that depression and suicide ran in my family? Or not updating them when those facts did come to my attention?

  66. What I was originally commenting on was in reference to including access to mother's medical records in a law pertaining to open records for adult adoptees.

    Agency and records are held by agencies, not vital statistics which has only birth certificates.Agencies have their own policies about what non-identifying info they will release. I still think laws mixing access to the two are not a good idea, but that does not mean I want agencies prevented from releasing information that might be vital to the adoptee and his family.

    While combining access to different kinds of records for searching adoptees is not a great idea, that is not what the Juman case or others like it were about. I ask once again, can you really defend a lying, dishonest, unethical agency like Louise Wise!

    In a sense, yes, I have changed my mind since the Juman case was brought into this discussion. I do think potential adoptive parents have a right to complete information about serious medical conditions like schizophrenia in the birthparents, as do adoptees, and that agencies have an obligation to provide this, and not to lie or cover up.

    We are not talking about some social worker's trivial opinion here, or notes on the mother crying or something. If you want to extend the idea of not releasing any medical information to extend to cases like the Jumans, yes, I have changed my mind.

    I have changed my mind thanks to the kind of opinions you and few others have expressed here. I would rather see agencies err on the side of releasing too much information than not enough. This issue has gotten ugly and unreasonable on both sides.

  67. kitta here:


    No one said any agency should be defended for lying..in fact that problem of lying is partly what the original post was about. We cannot trust agencies to truthfully convey anything about us.

    Adoption agencies are not doctors nor geneticists and they cannot be in the business of judging what medical information should be released.They cannot diagnose medical conditions.

    If a medical condition exists in an incapacitated parent, that has bearing on an infant child, then there are legal methods to release medical records deemed to be necessary. That judgement really should be made by a medical person, not an adoption agency worker.Legal consents can be obtained quickly.

    But that was not known in 1966.

    When the Jumans determined that Michael had a mental problem, they were able to get some medical information released from a doctor who had access to the files on the mother.Michael's psychiatrist was able to do it. By that time they already knew Michael was schizophrenic...and Michael found his natural family, as well.

    Michael was able to learn much more directly from his family.This is the way information should be shared. This is how families do it.

    The knowledge of treatments had also changed drastically by the 1980s...with lobotomy no longer being acceptable, as I am sure you know.

    Possibly, Michael's mother would not have been so sick if she had had better treatment...who knows.

  68. Kitta,

    So when parents adopt a child, the agency should share no medical background with the adoptive parents? Should agencies be forbidden by law to share any medical information about the birth parents without a court order etc? That seems to be where this is going.

    No, I do not support that, and at this point I really do not care if agencies give out medical information. You do not have to be a doctor to convey factual information about health history. What started as what seemed a reasonable objection to mothers filling out a medical form as a condition to placing a veto on adoptee records has morphed into hysteria over potential lawsuits etc. and taken on a life of its own. Like so much in adoption, I think it is really all about control and resentment at what was done in the past, not real issues of the present.

    I wonder who you are under your pseudonym, since we have both been around a long time and in CUB no doubt we have met in the past. Just curious.

  69. Gaye's question remains:
    "How would your opinion change if the first parent was (a)deceased, (b)could not be found, or (c)rejected contact?"

    Part of the justification for allowing access to family medical or social history is exactly those cases. This is also one reason why the information was collected at the time of surrender - if the mother indeed went on to live her life "as if it never happened", there was at least some tiny speck of information for the adoptee.

    I see a possible solution here - what do first mothers feel about voluntarily adding their side of the social history (your version of the events leading up to surrender, if that is what you feel the agency/caseworker may have lied about) and any medical information YOU feel your child should have, with a note stating this information should be made available to the adoptee should they ever inquire about it?

    Even this is not a perfect solution; many agencies and attorneys have gone out of existence, but this would hardly violate anyone's right to privacy. Many adoptees find only a tombstone at the end of their search - it would be very helpful to at least find some closure and information in these cases.

    I did run a summary of all that I have seen about this topic past a friend who is a RN with no direct connection to adoption. Her reaction was astonishment that anyone could be so selfish as to withhold information which could aid in diagnosing or treating health conditions. She is quite aware of HIPAA in her daily work, and pointed out that HIPAA only penalizes those who have access or custody of patient records, NOT the person who gives the information.

    How incredible it is to me that the traumas of relinquishment and adoption are so toxic as to make this debate even possible; it contradicts every aspect of normal maternal and filial love! To those outside the adoption triad, we truly do appear to be nuts, which is exploited by those who gain by keeping closed records sealed...

  70. " "It is precisely *because* it was of a mentally incapacitating nature that she was not in a situation either to give or to withhold consent."
    We are all assuming the above."

    I think it's a reasonable assumption, given that we know the poor woman had been lobotomized 17 years before Michael's birth, and that her brother had told Michael that she was able to communicate only "on and off", was depressed and sometimes irrational.

    "Michael wanted to meet his mother. Even after he found out about her disease, he still wanted to meet her. He was denied that. In the end, he wanted that and was never allowed that. I really wonder if anyone involved, including his adoptive parents, actually understood that. Maybe meeting her would have helped him more than any " treatments."

    Maybe it would. Maybe it wouldn't.
    But it wasn't his parents who denied him. It was the agency hiding behind the letter of the law, as well as using their influence to prevent Florence Dayboch's brother from telling Michael what he had a right to know.

    "If he was that sick, why did the family trust his judgment"
    He was smart and determined enough to discover *on his own initiative* the circumstances behind his relinquishment and subsequent adoption. IMO once he knew that, his adoptive family was honor bound to support him.

    "...and he did die soon after..."

    What was it someone said about making assumptions?

    "No one said any agency should be defended for lying..in fact that problem of lying is partly what the original post was about. We cannot trust agencies to truthfully convey anything about us. "

    That is why Michael and his parents pursued their case. Louise Wise used the law to hide behind. The Jumans used it as it should be used, to fight for justice. It is partly due to their efforts that an unscrupulous agency was brought down.
    When the law is an ass, as it sometimes is, people like the Jumans are among those who deserve credit for trying to change things for the better. They do not deserve to be dissed, directly or indirectly.

  71. "Yet WE are the ones MaryAnne calls "hard-hearted" for trying to protect ourselves from abuse. I don't think so."

    Correction: She called agencies "heartless".

  72. d28bob said "I see a possible solution here - what do first mothers feel about voluntarily adding their side of the social history (your version of the events leading up to surrender, if that is what you feel the agency/caseworker may have lied about) and any medical information YOU feel your child should have, with a note stating this information should be made available to the adoptee should they ever inquire about it?"

    I like that idea, even though it isn't a perfect solution.
    I did something similar myself, although post-reunion, to set the records straight for posterity.
    I wrote a long account of the events leading up to my child's relinquishment and sent a copy to my child, my child's father and to social services who have added it to their records.

  73. Kitta here:

    "I see a possible solution here - what do first mothers feel about voluntarily adding their side of the social history (your version of the events leading up to surrender, if that is what you feel the agency/caseworker may have lied about) and any medical information YOU feel your child should have, with a note stating this information should be made available to the adoptee should they ever inquire about it?"

    Bob, that is what some agencies are doing now. I think that is reasonable and acceptable. The mother has to sign a consent on the medical and social forms.(I have seen them)There has to be a disclaimer as well, that these events and conditions may not be well understood...and it should be understood that medical conditions can change...or not be diagnosed accurately.

    Medical history can only apply to the person who is filling out the form. We really don't have the authority to answer for our relatives. It is not "selfish" to deny information that may not be accurate or true.

    I too have discussed these issues many times with medical people in my own family and they have no problem understanding the HIPAA ramifications as well as the misunderstood "medical information" that could result in someone being seriously harmed. Sometimes a "little bit of knowledge" truly is a dangerous thing...because it is inaccurate.

    And as I have said before, I really believe in direct communication..adoptive families and adopted people talking to their natural parents. I don't believe in sealed OBC's or amended birth certificates...or closed adoptions.

  74. Kitta here:

    "So when parents adopt a child, the agency should share no medical background with the adoptive parents"

    Maryanne, . Yes, I think the mother's and father's own medical histories can and should be voluntarily supplied, with their signed consents, and filled out by the natural parents themselves..not the social worker. A court order is not necessary, once that is on file with the consent.(if the parent cannot consent, a legal/medical guardian may do this very quickly, but the medical record will have to be filled out by a doctor) many states already are doing this.

    But maybe this is worth mentioning again. Most agencies as you know are asking health history. In some states, they are asking for a complete family history, including questions on "drug abuse" in all relatives, or questions about inherited diseases in distant relatives that the average person may simply not know.

    As Jane has mentioned earlier in this blog, it was her brother's pot smoking that was called "mental illness" by the agency and that information was given by the agency to Jane's daughter. I do not think that Jane's daughter should have received that information from the agency, even though Jane had submitted it.

    Her brother never gave his consent. That is the point with regard to that particular incident and that is significant.

  75. Here we go again; if we cannot mention drug abuse or alcoholism or mental illness in anyone but ourselves, how can that be a real "family history"? I am not an alcoholic, neither is my son's father. Nor were we drug abusers.

    However, there are quite a few alcoholics in my Irish and Polish family (big shock:-) Should I not have the right to mention that? Would it have compromised the confidentiality of Uncle Stanley who died of bleeding ulcers in his 50s due to the drink shortly after my first son was born?

    Drug abuse is relevant too. Not pretty, but relevant. Addictive tendencies do run in families. My son had a right to know that.

    Anyone can lie, including birth mothers. It is not just social workers who make up or conceal information. Nobody should lie, and of course old information should always be taken with a grain of salt. Is that so hard?

    I do not really understand why this is such a big issue for you and some other mothers. Family history is what it is, and some of it is often not so nice.

  76. Is there anyone on the planet who doesnt't have an alcoholic somewhere in the family gene pool?

    It's pretty safe to assume that anyone can become addicted to some type of substance, adopted or not. Could be booze, painkillers, sleeping pills, anti-depressants, stimulants, you name it - none of us are immune to addiction.

  77. Yes, anyone can become an addict, anyone can become diabetic, anyone can develop cancer or high blood pressure or schizophrenia.
    But all these things have been found to have a hereditary component, meaning if it runs in your family you are more likely to develop the problem, and it is a useful thing to know.

    My father and one of my sons chose not to drink given the family history. Two of my sons had problems with drinking and quit.

    Just because you do not like adoption agencies collecting family histories is not a reason to dismiss the utility of such histories for all of us, adopted or not.

  78. So would a family adopt my child if they cared about the medical history? I can tell you from my experience 17 yrs ago that they asked me for that information after the fact ('baby first please...and oh by the way...what's in your closet?'). I am on the fence. I don't think that, if you were not asked up front and volunteered information, then anyone should be able to see it when accessing other adoption records (adoptee, aparents). Don't adoptees usually seek out family to ask that? So they get that and it is done? For some, I suppose yes. Really sad. I would not vote in favor of allowing such details to be released without consent of the birthmother/birthfather. And they just want you to sign on the dotted line anyway. Let's be honest!

  79. kitta here:

    "I would not vote in favor of allowing such details to be released without consent of the birthmother/birthfather"

    Julie, nor would I..which has been my position. Consent to release our medical and social files is, or should be, a legal right.

    I have reviewed the laws around this issue in some states and usually there is a requirement for written consent by a natural parent before medical records or medical history can be released.

    If no consent is available, the laws are strict and require that the medical information be "requested specifically" and it should be "medically necessary." This requires a doctor or legal/medical guardian to intervene.

    Many mothers are unaware that their OB/gyns submitted their medical records to their adoption agencies at the time of their children's births(mine did).

    Until I actually requested and received my medical file from my agency, I had no idea how private and personal the information in that file actually was, because I have never seen it before.And how completely irrelevant it was to the health of my grandchildren or any other descendants of mine.

  80. At 40 I have been given the names and addresses of my birthmother, maternal grandfather and one of my half-sisters.

    I had my name on the NY registry from the age of 16. I paid my $70 or whatever it was and waited. And waited.

    My birthmother either did not want to be found, or she was dead.

    NY State would not give out the information if she was dead.

    I have had a hole in my soul from day one, not knowing who my mother was, wondering, always wondering. Looking around at every face, thinking, could we be related?

    I didn't get my non-identifying information from the state until I was 23. Why such a long wait? I paid my money and it took them 8 years???

    The non-identifying information was shocking in itself. From the sounds of it, my mother looked nothing like me, and I took after my father, but he was not told of the birth or the adoption according to the records. He sounded very romantic, 6'3" with blonde hair and blue eyes, and a poet/writer.

    Flash forward another 20 or so years and I made enquiries about hiring a private investigator that specialised in adoption cases, even with closed records.

    It took her 3 days to find my birthmother and the rest.

    She also uncovered that my mother gave up another child 2 years prior to my adoption.

    My birthmother was/is alive and well and living in Virginia, near her daughter, my younger half sister.

    The investigator called up my birthmother and was met with fury. She denied being my mother, and was furious to be contacted. Finally she agreed to let me write her a letter.

    It was the hardest letter I ever wrote. It was very sympathetic to her for giving me up as a teenager, and said thank you for giving me life... here's a breakdown of my life so far, pictures of me and my daughter, etc.

    I never heard back from her.

    Well, not until I wrote a letter to her dad, my grandfather, asking if he could tell me a bit about family history etc.

    Then she got in touch quickly. Turned out her parents and family knew about the first adoption but not me.

    I was sympathetic, but also believe that 40 years later is plenty enough time for her to have got to grips with it, and even if she lied or kept it a secret as a teen, times change, morees change, people are more accepting overall of the plights of young women in that situation than they were back then.

    Well, I did expect that perhaps the circumstances of my conception and birth were not a happy memory for her, and I did brace myself for the worst, but I couldn't have guessed that my imagined worst couldn't touch the reality.

    Turns out I was the product of a gang rape.

    She explained blow by blow how she was beaten and raped by 6 men, on behalf of a man who had been stalking her and who the police had sent away. I cried to my very core hearing that these were my beginnings and that my father could have been any one of 6 redneck hillbillies raping her to avenge a man who had been stalking her. She went through hell and I felt for her, and yet also felt that my life had no meaning whatsoever if this is how it started, but this I kept to myself.

    She was furious that I contacted her, even that I searched, and yet was sympathetic towards the first born adoptee whom everyone knew about.

    It was like she was punishing me for what had happened to her and blaming me for not leaving well enough alone.

    She said that she had counselling on and off over the years for it, and now I come along and dredge up the past again.

    Though I feel sympathetic, I assured her that she was not the only person who feels rage over the past. She turned on me viciously and it was the worst possible "reunion" imaginable.

    It took a long time for me to get up the courage to search and then contact her, and even though it was painful, I would rather the truth than the fantasies I've had to construct to fill in the blanks.



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