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Thread: Mutilation of daughter as disability treatment

  1. #551
    Quote Originally Posted by antiquity
    I'll quit assuming things when you and everyone else in this topic and every future topic/discussion on CC does.
    I don't make assumptions in these discussions, I ask questions. And even if everyone else on the boards was commiting the same error, it wouldn't make it OK.

    The point still stands that we don't know who paid for these surgeries and treatment and if other options would have been covered by the same agency.

    C.

  2. #552
    Quote Originally Posted by Tiger Racing
    I don't make assumptions in these discussions, I ask questions. And even if everyone else on the boards was commiting the same error, it wouldn't make it OK.

    The point still stands that we don't know who paid for these surgeries and treatment and if other options would have been covered by the same agency.

    C.
    Actually you have but regardless, assumptions made within a non-hostile context aren't against CC's posting rules so it does make it OK.



    No, we don't know for sure. Rehab rhino assumed that perhaps financial burdens were a factor in their decision. I suggested, in light of the high cost of the treatment, that perhaps the inability to pay or lack of insurance wasn't a factor.
    Last edited by antiquity; 02-01-2007 at 05:17 AM.

  3. #553
    Quote Originally Posted by leschinsky
    I dunno, I would like to know if the family has a history of severe menstrual syptoms, I had a friend that missed school every month from them. The removal of the uterus is kinda a side note in the docs so I'm not so sure we have all the info on that decision. The breast thing freaked me out too but again i don't think we have all the info there too I cannot imagine that the Seattle docs would just lop them off without good reason i.e. familial history of deaths from breast cancer. I cannot make a kneejerk condemnation with the facts we have now, but altogether the situation creeps me out.
    Lesch,

    I know that we can speculate forever but the reason why you are feeling creeped out is because we all know in our hearts that if they did anything like to a non retarded child, it would be criminal. Would one have the right to remove the breasts of a child from a family with large breasts? Or, the uterus of a child from a family with severe menstrual cramps? The moment I realized that fact and then attempted to face the question whether mental retardation allows us to take such rights from people, the answer becomes obvious. We must not take those rights away.

    Wise.
    Last edited by Wise Young; 02-01-2007 at 10:21 PM.

  4. #554
    Quote Originally Posted by Wise Young
    Lesch,

    I know that we can speculate forever but the reason why you are feeling creeped out is because we all know in our hearts that if they did anything like to a non retarted child, it would be criminal. Would one have the right to remove the breasts of a child from a family with large breasts? Or, the uterus of a child from a family with severe menstrual cramps? The moment I realized that fact and then attempted to face the question whether mental retardation allows us to take such rights from people, the answer becomes obvious. We must not take those rights away.

    Wise.
    I agree Wise. This is such an awful and gruesome violation of her little body. I really, really don't think people would be so quick to approve this if she was not disabled. I've maintained that throughout. IMO, a lot of what is being expressed is the ableist pecking order that Cspan referred to. This is a very dangerous and slippery slope and why those 72 human and disability rights organizations are outraged.

    Children, by definition, have fewer rights than adults. Disabled children struggle even greater to be heard. Add a significant cognitive impairment into the mix and sometimes people forget you're human entirely.

  5. #555
    Just an update - now it is 82 disability organizations and 368 individuals. Momentum is slow, but growing.
    Ashley is a little girl worth knowing about:http://www.ashleyx.info

  6. #556
    Hello,

    I very recently found this board, and this is my 1st post. I’m a Mother of a MR/DD child a lot like “Ashley”, she is now 26 yrs.

    When she was growing into puberty I was concerned of the very same things “Ashley’s” parents were. But then realized that this was a normal occurrence for all women to go through regardless of what mental state they would be. Many people who helped care for my daughter, reassured me that when, or if, her period started, that, in their experience, it would be very little bleeding and for a very short time. (These are people who actually work with MR/DD people daily and for many years). By the time she turned 19 she still hadn’t started so I took her to my GYN for a check up. My GYN told me her estrogen wasn’t high enough for her to start a period since she was small (under 90lbs). By the time she was 21 she was up to 100lbs and did start. It’s very little and very short duration. I give her Midol if she seems cranky and all’s well. She doesn’t understand what’s happening to her that I know of, but who knows maybe something internal “clicks” on, we don’t know. And yes, I’m worried about some sicko sexually abusing her, but I also trust a “higher power” to care for her when she’s away from me.

    I also understand the care giving issue. I want to keep my daughter in our home for as long as we/she can. We’ve been through many caregivers and after 4 years of revolving door caregivers, we’ve found someone so wonderful, she’s been with us for 4 years and we feel so blessed. And yes, I still lift, carry, etc. my 100 lb daughter whose 5 foot, but we also have a Hoyer lift, wheelchairs, bath chairs, etc.

    My husband was very upset when he heard about this. He couldn't believe a real doctor would do this. We should not be able to force our MR/DD children to stay the way we want them if they can’t conform to our needs.

    This family would have been able to care for their daughter as she grew to an adult, as lots of families do. I personally could re-butt every excuse they give for doing this! As I've been down this road already, and yes my family has a history of breast cancer too.

    The thing that frightens me the most is the slippery slop this will cause with more families “making” their MR/DD children fit their caregiving needs. Believe it or not there are many blessing is seeing your children grow up even with MR/DD. It's amazing how well children and families adapt to normal changes!

    Kim

  7. #557
    Quote Originally Posted by OSU fan
    Hello,

    I very recently found this board, and this is my 1st post. I’m a Mother of a MR/DD child a lot like “Ashley”, she is now 26 yrs.

    When she was growing into puberty I was concerned of the very same things “Ashley’s” parents were. But then realized that this was a normal occurrence for all women to go through regardless of what mental state they would be. Many people who helped care for my daughter, reassured me that when, or if, her period started, that, in their experience, it would be very little bleeding and for a very short time. (These are people who actually work with MR/DD people daily and for many years). By the time she turned 19 she still hadn’t started so I took her to my GYN for a check up. My GYN told me her estrogen wasn’t high enough for her to start a period since she was small (under 90lbs). By the time she was 21 she was up to 100lbs and did start. It’s very little and very short duration. I give her Midol if she seems cranky and all’s well. She doesn’t understand what’s happening to her that I know of, but who knows maybe something internal “clicks” on, we don’t know. And yes, I’m worried about some sicko sexually abusing her, but I also trust a “higher power” to care for her when she’s away from me.

    I also understand the care giving issue. I want to keep my daughter in our home for as long as we/she can. We’ve been through many caregivers and after 4 years of revolving door caregivers, we’ve found someone so wonderful, she’s been with us for 4 years and we feel so blessed. And yes, I still lift, carry, etc. my 100 lb daughter whose 5 foot, but we also have a Hoyer lift, wheelchairs, bath chairs, etc.

    My husband was very upset when he heard about this. He couldn't believe a real doctor would do this. We should not be able to force our MR/DD children to stay the way we want them if they can’t conform to our needs.

    This family would have been able to care for their daughter as she grew to an adult, as lots of families do. I personally could re-butt every excuse they give for doing this! As I've been down this road already, and yes my family has a history of breast cancer too.

    The thing that frightens me the most is the slippery slop this will cause with more families “making” their MR/DD children fit their caregiving needs. Believe it or not there are many blessing is seeing your children grow up even with MR/DD. It's amazing how well children and families adapt to normal changes!

    Kim

    Hi Kim. Thank you for your insightful post. It's especially important to hear from a mother who actually has a disabled child with a similar condition and has successfully worked through the challenges. It would have been great if Ashley's parents had the opportunity to meet with other parents in similar situations (yes, I'm assuming they didn't) or for those responsible for this decision to have at least sought the input of a parent like yourself.

    Many of us in this thread became disabled as children so we know that it is 100% possible to be loved, cared for and *gasp* lifted without growth attenuation.

    This is nothing that a little determination, creativity and adaptive equipment couldn't handle. My mother lifted me, boobs, uterus and all, well into my teens at around 90lbs too. Rehab. specialists can teach caregivers how to lift with minimal strain to the back and knees.

    Surgical growth attenuation is cruel, excessive and completely unwarranted in these cases.
    Last edited by antiquity; 02-02-2007 at 02:22 AM.

  8. #558
    Thank you, OSU fan, for your very real and knowledgeable take on this situation.

    Seneca, I have read and followed this thread throughout and agree with you on every single point.

    My first response on the day this was posted was complete and utter outrage and shock. I held myself, and have held myself for many days hence because I am trying to train myself to stop and assess situations before I react.

    That said, I will say this:

    When I was 6 months pregnant with my daughter, who just turned 13 yesterday, I took a test which, at the time, was sanctioned and advised by the State of California to see if my child might have Down's Syndrome, or some other serious condition. Unknown to me at the time, my Doctor chose to do other tests which I did not give him permission, or authorization, to do. He came back a month later and said that there was a 'good chance' (60 percent based on his unauthorized tests), that my daughter would be born with Down's Syndrome. I immediately took offense and asked him what he expected/wanted me to do about this 'outcome' and he stated he wanted to know if I was willing to abort her based on these conclusions. I flipped out and said a definative "NO." I was very pissed that he did these tests without my knowledge and permission to begin with, to assert or encourage me to kill my child based on their outcome, to me, was out of the question.

    My daughter was born 13 years ago yesterday without complication and, not only does she NOT have Down's Syndrome, she has proven to be a very intelligent and gifted student. The thought that I, as her mother, could have chosen to abort, i.e. KILL her before her birth based on the Doctor's conclusions, had I been naive and culcable is so scary I shudder and think it's a great thing that my grandfather taught me, by example, to study and assess every decision for myself.

    Ashley did not have to undergo this horrendous surgery and intrustion into her body to facilitate the needs of the few. I am appallled, and disheartened, by this situation to say the very least. The fact that the conclusion of a 'body' of people may have long range implications into the life of my loved ones, and others, is catastrophic.

  9. #559
    And sadly now, all pregnant women are going to be encouraged to routinely have a test for Down syndrome which is far from 100% accurate. How many babies without Down syndrome will be aborted? How many babies with Down syndrome will be aborted that if there was time to fall in love with them would have been welcome as part of the diversity of human experience?
    Ashley is a little girl worth knowing about:http://www.ashleyx.info

  10. #560
    Quote Originally Posted by antiquity
    I agree Wise. This is such an awful and gruesome violation of her little body. I really, really don't think people would be so quick to approve this if she was not disabled. I've maintained that throughout. IMO, a lot of what is being expressed is the ableist pecking order that Cspan referred to. This is a very dangerous and slippery slope and why those 72 human and disability rights organizations are outraged.
    Antiquity,

    In my opinion, the doctors and parents are not just on "a very dangerous and slippery slope". They have skiied down the slope to the bottom of a deep chasm. An earlier post suggested that the parents used the term "pillow angel" to describe their child. I sincerely hope that they did not use this dehumanizing term. If I were a doctor involved in the case, I would feel deeply discomforted by the term.

    The procedure is much more than neutering. This is a massive manipulation of hormones of a retarded child that not only eliminated her sexuality but stunted her growth and probably had significant effects on other organ development, including the brain. As pointed out, the consequences of such hormonal manipulation are not known.

    I know some people have suggested here that IRB approval was not required for this procedure. I think that IRB approval should have been required for this procedure. It is unquestionably an experimental procedure. All experimental procedures should be reviewed by an IRB for medical risks and benefit, for the protection of the subject.

    It is ironic. If this same procedure had been proposed as a treatment for reversing mental retardation, it definitely would have required intensive review by the IRB and probably the FDA (because some drugs were used). Why should the intent of a procedure determine whether it should be reviewed by the IRB and FDA? If it had not been reviewed by the IRB, I think that it is wrong.

    Wise.
    Last edited by Wise Young; 02-01-2007 at 11:22 PM.

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