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    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,
    Ashley is a little girl worth knowing about:http://www.ashleyx.info

    #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

    Comment


      #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.

      Comment


        #4
        I would never judge the parents for their decision. Ashley is cognitively unaware. They are not even sure she recognized her own parents. Is your son that severely impaired mentally? You stated that "She is a little girl who has every right to grow up to become a young woman and an adult". She will never be a young woman or an adult... she is mentally an infant and will always remain so. I am sorry that your son is moderately disabled, but I believe this family is in a far different situation and it is unfair to judge their motives.

        Comment


          #5
          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.
          Ashley is a little girl worth knowing about:http://www.ashleyx.info

          Comment


            #6
            How do you or anyone know Ashley is cognitively unaware? She is unable to communicate - that is a very BIG difference. Have you looked at her photos? - she speaks with her eyes that she is happy. She obviously laughs and smiles. If she was as cognitvely unaware as they say she wouldn't enjoy visits to the zoo and being included in family functions.

            My son speaks is sentences that resemble a 3 year old and so people think he understands his world as a 3 year old does - but if you listen you know he understand the world like the 23 year he is.

            There are people with graduate degrees who cannot speak - but they have had the benefit of facilitative communication - someday that could be key to Ashley's ability to communicate too.
            Ashley is a little girl worth knowing about:http://www.ashleyx.info

            Comment


              #7
              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

              Comment


                #8
                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; 10 Jan 2007, 1:17 AM.
                Blog:
                Does This Wheelchair Make My Ass Look Fat?

                Comment


                  #9
                  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.

                  Comment


                    #10
                    I agree with the several posters above. It was an extremely difficult decision to have to make. I have no doubt it caused them a lot of agony. I also have no doubt that the best interest of the child is foremost in their minds. I could not support any harassment of the parents or their doctors for their actions.
                    - Richard

                    Comment


                      #11
                      The surgery to remove her uterus and appendix are unnecessary. She can be preventing from having children, and having periods in many other less invasive and reversible ways.

                      The hormone treatment she is receiving is completely experimental. No one her age or even near her age has received such a high dosage of hormones. No one has any idea what effect it will have on her. This is the type of treatment that usually has to go through a very strigent approval process - and didn't. Why not?

                      Melinda Gates is in charge of the hospital's fundraising program - the person in her position is an obvious target for this type of outreach. She has to answer to people who want to contribute to the hospital fundraising efforts.

                      Just becausea person does something out of love and best intentions doesn't make it right.
                      Ashley is a little girl worth knowing about:http://www.ashleyx.info

                      Comment


                        #12
                        The parents and doctors chose to go pubic with what they did three years ago now. The doctors wrote an article and put it in a medical journal that was published in November and the parents created their blog - if they did not want the public to weigh in on what they did they should have stayed silent.
                        Ashley is a little girl worth knowing about:http://www.ashleyx.info

                        Comment


                          #13
                          And what are your intentions for this thread?

                          If you don't want to give money to the hospital, don't.

                          As for the meds being experimental, I'm thankful for people who've been first, who've made tough decisions, who've tried something new in hope for a better future. without those firsts, we wouldn't have any adbancements we have in medicine, in science. Most of us at CC would be dead.

                          I understand why the parents made the decisions they have. They'd rather care for Ashley themselves, not place her in an institution.

                          Just because you disagree with the medical decisions made in Ashley's care doesn't mean you're correct in pushing for a protest. I say leave those parents alone.

                          Comment


                            #14
                            Originally posted by PDnemesis
                            The parents and doctors chose to go pubic with what they did three years ago now. The doctors wrote an article and put it in a medical journal that was published in November and the parents created their blog - if they did not want the public to weigh in on what they did they should have stayed silent.
                            So weigh in. Just don't expect every person in the disabled world to jump onto your bandwagon.

                            This is one gimp who thinks you should leave those parents, that child and the hospital involved, alone.

                            I'll expend my efforts for a cure for paralysis.

                            Comment


                              #15
                              The Action Alert wasn't from me personally. This is a national effort of many many people in the disability community.
                              Ashley is a little girl worth knowing about:http://www.ashleyx.info

                              Comment

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