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  1. #1

    Mutilation of daughter as disability treatment

    ACTION ALERT

    Fax/E-mail/Phone Campaign

    Feminist Response in Disability Activism (FRIDA), with the support of
    Chicago ADAPT, the national ADAPT community and Not Dead Yet,
    invites you to speak out about the “Ashley Treatment.”

    Our Targets: Seattle Children’s Hospital staff involved in the case of
    nine-year-old Ashley’s growth attenuation and sterilization, as well as
    Melinda Gates, chair of the Seattle Children’s Hospital fundraising
    committee and Susan Macek, Director of Communications for Seattle
    Children’s Hospital.

    Why: To oppose their permission of what is now known as the “Ashley
    Treatment,” and to condemn further permission of such “treatments” for
    children with disabilities whose lives are not otherwise at risk.

    When: Tuesday, January 9, 2007, starting at 9 am in your time zone.

    Contact Info:

    Dr. Douglas Diekema

    Phone: 206-987-2380

    B-5520 – Emergency Medicine
    4800 Sand Point Way NE
    Seattle, WA 98105
    Fax: (206) 987-3836
    E-mail: Douglas.diekema@seattlechildrens.org


    Dr. Daniel F. Gunther
    Phone: (206) 987-2380
    M1-3 – Endocrinology
    4800 Sand Point Way NE
    Seattle, WA 98105
    Fax: (206) 987-3836
    E-mail: Dan.gunther@seattlechildrens.org


    Melinda Gates
    PO Box 23350
    Seattle, WA 98102
    Phone: (206) 709-3100
    Fax: (206) 709-3252
    Email: info@gatesfoundation.org

    Susan Macek
    Director of Communications, Seattle Children’s Hospital
    Phone: (206) 987-5201
    Pager: (206) 469-6310
    E-mail: susan.macek@seattlechildrens.org


    Ashley is a nine-year-old with a severe cognitive disability. In order to
    keep her small and more easily cared for by her family, doctors at
    Seattle Children’s Hospital are having her undergo hormone “therapy”
    to stunt her growth. In addition, they surgically removed her breast
    buds, uterus and appendix. The “Ashley Treatment,” as her parents
    call it, is a medical “fix” to serious social problems we face in America
    today. The first of these problems is a lack of quality home-based
    services for people with disabilities. The second is the social attitude
    that people with disabilities are less than human and therefore fair
    game for experimentation. The third is a lack of understanding of
    disability vs. illness: as Joe Hall of South Carolina has stated, “When
    I was born my parents knew that I would never walk, but they would
    have never thought it would be acceptable to cut my legs off.”


    To review Ashley’s parents’ blog, please see:

    http://ashleytreatment.spaces.live.com/

    To review one of the original articles as reported by the BBC, please see:

    http://news.bbc.co.uk/go/pr/fr/-/2/h...as/6229799.stm

    We need to let the Seattle Children’s Hospital and its fundraising
    chairperson know that the Ashley Treatment has not gone unnoticed
    by those of us who live with disabilities.

    This is the email I sent:

    I am horrified by the Ashley Treatment.

    As the single parent of a young adult who is moderately disabled by both Down syndrome and prenatal exposure from his birth mother to drugs and alcohol, I can say with all honesty that there have been times when ideas have crossed my mind that have made me wonder what means not completely dissimilar to the Ashley Treatment would make it easier to take care of my child. Those ideas have entered my mind when I have faced roadblocks, confusion, and dispair. So do not think I have not been where these parents are - I have been.

    Thankfully, these moments of dispair have challenged me to work harder to provide my son with access to everything he needs to be the best person he can be. It has compelled me to work harder for access to services our family needs to remain the family we want to be. It has demanded that I become a disability activist struggling to help people understand his rights as person to be fully integrated into life however he chooses to be.

    Yes, this has forced me to make difficult decisions that have not always been easy. No decision I have ever made would compromise the person my son is or take away any of his personhood. I cannot imagine authorizing a treatment plan that would force him to fundamentally change from the person he is or will become.

    Ashley is not a medical experiment. She is a little girl who has every right to grow up to become a young woman and an adult. If this makes it harder for her parents to raise her - then the solution is to work harder toward finding means to get the help and support they as parents need to raise Ashley.

    These parents have harnessed an amazing amount of energy to get their child what they think she needs, I cannot for one second believe they could not have used that energy to get the services and care she needed without resorting to this horrid mutilation of her body.

    Elie Wiesel said “in extreme situations when human lives and dignity are at stake, neutrality is a sin." It has not gone unnoticed who has given the parents the tools they needed to commit atrocities upon their daughter.

    Most sincerely,

  2. #2
    I think it is up to the parents and everyone else should stay out.
    Rick Brauer or just call me - Mr B

    http://www.riseadventures.org

  3. #3
    I don't see this as an issue over which I'll spend my time writing letters and making phone calls.

    Ashley is cognitively three months old. The parents say they made the choice for the surgery and medication because they don't want her possibly abused later in life.

    Whatever your situation with your son, Susan, that's your business.

    I'm sure these parents made a difficult decision in an even more difficult situation. I'll not judge them for it.

  4. #4
    Moderator Obieone's Avatar
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    Quote Originally Posted by LaMemChose
    I don't see this as an issue over which I'll spend my time writing letters and making phone calls.

    Ashley is cognitively three months old. The parents say they made the choice for the surgery and medication because they don't want her possibly abused later in life.

    Whatever your situation with your son, Susan, that's your business.

    I'm sure these parents made a difficult decision in an even more difficult situation. I'll not judge them for it.
    Exactly ....... if there is any judging to be done ..... its certainly not up to us ..... as a parent I can only imagine how gut wrenching it was for these folks getting to the place where these decisons had to be made and then living with those decisons! My heart breaks for them and I wish them peace ! There is no question after having read their blog and viewing the pics this is a child who is well loved!
    I can not support your position!

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  5. #5
    I can't judge them. I think they probably have a pretty good idea how much their daughter processes mentally.

    Stunting her growth is their solution to her growing too large for them to care for her, correct? They aren't stunting her so she'll stay cute, or funny, or childlike. Just so they can care for her.

    It's a horrible thing for them to have to do. There are other solutions, like institutionalizing her...I actually have to applaud their taking a hard choice in attempt to ensure their daughter's care and safety. Also, they are removing secondary sexual characteristics, not lobotomizing her. The future speculative potential facilitative communication PDNemesis mentions need not be beyond her scope due to this surgery or hormone treatment (in my uneducated opinion).

    I don't know much about it but on the surface they seem like loving parents.

    ETA: Is it just me or is the targeting of Melinda Gates quite random and possibly a big intentional media play?
    Last edited by betheny; 01-10-2007 at 01:17 AM.

  6. #6
    If they wanted to be rid of their daughter they could. If they wanted to place her in an institution, they could.

    They don't want to. They love her, want to care for her themselves.

    By having the surgery, she'll not become pregnant from rape. She won't have breasts or periods. She won't get too large for her parants to lift on their own.

    This decision had to be gut-wrenching. These parents made a hellish decision so they could keep Ashley at home.

    Leave the parents alone, Susan. Raise your child as you wish. Don't tell them how to raise their very significantly disabled daughter.

    The doctors are probably very accurate about her cognitive abilities. She's never going to thrill to the joys of womanhood with the mind of a three month old. A woman's body will not benefit her as she ages chronologically.

    As for saying they should not do this for their daughter, do you also think people shouldn't have surgery to improve other situations or conditions? We should just be as we are, not try to have better lives through medicine and surgery?

    If I break a leg, should I just accept it, embrace it, learn to live with it and love it? Or should I get help for my leg, including casts and surgery if necessary?

    You're trying to apply your views of about disability rights to people you don't know just to make a point.

    If they had a child who was going to be very short, would growth meds be wrong? Possibly to you, but to a child who has the opportunity to be more like others, it would't be abusive.

    Seattle Children's is not handing out growth stunting meds and reproductive organ removing surgeries like candy on Halloween.

    I'm not calling to complain about this, not writing letters.

  7. #7
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    Quote Originally Posted by LaMemChose
    Ashley is cognitively three months old. The parents say they made the choice for the surgery and medication because they don't want her possibly abused later in life.
    Okay then, this is also very strange. When it comes to a possible abuse later in life why would this be an argument at all? Most likely the parents will live much longer than the kid due to her problems. Then if the parents are supposed to take care of her themselves why would this be necessary? Would it be necessary so that the parents themselves will not abuse her? This whole argument fails due to this.

  8. #8
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    Quote Originally Posted by Leif
    Okay then, this is also very strange. When it comes to a possible abuse later in life why would this be an argument at all? Most likely the parents will live much longer than the kid due to her problems. Then if the parents are supposed to take care of her themselves why would this be necessary? Would it be necessary so that the parents themselves will not abuse her? This whole argument fails due to this.
    Was this quoted in the medical journal as a reason for the surgery? I am curious as I read that the uterus was removed for the comfort of the child in regards to the monthly menses (cramps and blood and skin breakdown) not the probablility for abuse later in life. I do know several people who have underwent this same surgery for those reasons and are able bodied. The breast buds were removed because there was a strong family history of breast cancer and not only to limit the size. There are several people here in town that have had mastectomies for this very reason because usually if your mother or aunt has breast cancer (same with prostate) you are more likely to get it also. If I am not mistaken that is why they encourage people to get mammograms.

    Would a colostomy for a para/quad not fit this same comfort argument? Those who elect can elect to have a colostomy to relieve accidents, skin breakdowns, and many other preventable problems. The only difference is they are able to consent. I realize Ashley is not able to consent but who is the more qualified to offer consent for her? According to the law, it is the parents barring an abuse situation.

    I am not a big fan of the hormone treatment but again I am not in the parents shoes and very glad that I am not. I cannot understand why they would want to bombard her with hormone treatment other than to limit her size. I am not sure what I would do in the situation other than to do what I "thought" was best for my child.

    I can also understand the reasons for taking the appendix as Joe is right they usually do this in addition to any major abdominal surgery. A hospital is not allowed to bill for the removal of an appendix at the same time as another major abdominal surgery which hysterectomy would fall into that category. I am not sure about the ovaries unless there was a family history of ovarian cancer. Again that may have something to do with the hormone treatment....

    I still think they (the parents) went through many agonizing decisions to do this....
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  9. #9
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    Quote Originally Posted by darkeyed_daisy
    Was this quoted in the medical journal as a reason for the surgery? I am curious as I read that the uterus was removed for the comfort of the child in regards to the monthly menses (cramps and blood and skin breakdown) not the probablility for abuse later in life. I do know several people who have underwent this same surgery for those reasons and are able bodied. The breast buds were removed because there was a strong family history of breast cancer and not only to limit the size. There are several people here in town that have had mastectomies for this very reason because usually if your mother or aunt has breast cancer (same with prostate) you are more likely to get it also. If I am not mistaken that is why they encourage people to get mammograms.

    Would a colostomy for a para/quad not fit this same comfort argument? Those who elect can elect to have a colostomy to relieve accidents, skin breakdowns, and many other preventable problems. The only difference is they are able to consent. I realize Ashley is not able to consent but who is the more qualified to offer consent for her? According to the law, it is the parents barring an abuse situation.

    I am not a big fan of the hormone treatment but again I am not in the parents shoes and very glad that I am not. I cannot understand why they would want to bombard her with hormone treatment other than to limit her size. I am not sure what I would do in the situation other than to do what I "thought" was best for my child.

    I can also understand the reasons for taking the appendix as Joe is right they usually do this in addition to any major abdominal surgery. A hospital is not allowed to bill for the removal of an appendix at the same time as another major abdominal surgery which hysterectomy would fall into that category. I am not sure about the ovaries unless there was a family history of ovarian cancer. Again that may have something to do with the hormone treatment....

    I still think they (the parents) went through many agonizing decisions to do this....
    Hello Very Darkeyed Daisy’

    My comments were in general directed to abuse wherever it exists although aimed at this situation as well, not to this situation specifically so much although this situation with this kid is known in media and thereby is very valid as well. And this specific comment of mine was written as a comment to a post from “gun-lover with no answers” LaMem (yeah right) .

    My comment you refer to other than to put the whole bunch in jail was also due to LaMem comments when it came to a possible future abuse which to me would seem impossible due to what I commented and thereby rule out any surgeries to avoid a possible abuse as such. As for the medical journal I don’t have it, and if such a medical journal was published it would have been another and a clear abuse and also a breach of law in most places.

    As for able bodies or for that matter people that can make their own decisions they can do what they might please to do for what I am concerned, a side note; I can also see now that a new way actually originated from tattoos, trough piercing is now very popular in America and that is to do scarring. Fine by me if some wants it but to draw parallels to a situation in discussion here would be even more bizarre.

    As for breast buds. It is laughable thus those hormones and genes would not probably kick in or come into play as for a possible breast cancer long time after this person would have been dead due to other causes.

    As for colostomy, did "she" need it, hypothetically as you are hinting?

    And again, as for the parents, put them in jail. The kid for example could be adopt to India or Bangladesh where she could get real good foster parents more concerned of the kiddo than her real parents shows in their diffuse minds here along with some doctors which are likewise diffuse as their original profession should be.

    All those ideas are quite worrisome to me, like I said; over here any that tried something like that would have been thrown into the slammer, head first. And this can happen at your place? I am stunned and this is OK by some of you guys? But to do research on some cells are not? It’s strange Daisy, very strange indeed.


    The parents and the kid need help, other than this stuff.

    No attack on you here tough other than to say a couple of weeks in the slammer also could do some good in your thinking process, this coming from a man that supports ESC research.

    Last edited by Leif; 01-13-2007 at 02:27 PM.

  10. #10
    Parents do not own their children.

    When a parent beats their child as a punishment fort their own good - do we stay out of it then too? They believe it is the best thing for their kids too.

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