Page 59 of 70 FirstFirst ... 9495051525354555657585960616263646566676869 ... LastLast
Results 581 to 590 of 700

Thread: Mutilation of daughter as disability treatment

  1. #581
    susan , i totally agree with you . what was done to ashley is unacceptable and it shouldnt happen to other children !!!

    hugs, lola

  2. #582
    Suspended Andy's Avatar
    Join Date
    Jun 2003
    Location
    Chicago IL
    Posts
    9,722
    Quote Originally Posted by darkeyed_daisy
    The left her ovaries.
    ....Shudder

    You mean that this entire line of debate was worthless?

    Unless we want children to have higher cognitive function than their parents by say...age 1. I'm not even going to get into why an entity with the cognitive ablity of a baby would be impregnated and having children in the first place. Maybe the reasons given by the parents and doctors for what was done to Ashley might be just what they are on face value...to minimize issues that Ashley might suffer with as she matures? Maybe, just maybe this has been read into way too much? I think so.

    Yeah, it is a real shame that this happened. It is a real shame that genetic anomolies that would have 0 chance of survival in nature have been mercilessly subjected to survival in todays society by medical technology. Too bad those that have been subject to this 'care' are warehoused in squalor until they finally expire. Maybe the parents dont want to take this path for their child and did the best thing they could think of with the cards they were dealt?

    For us to compare the Ashley issue to, let us say, SCI, and say they are comparable...well, best of luck convincing others of that one.

  3. #583
    As I understand it, dozens of parents of children with chronic static encephalopathy are on a waiting list to have the same surgery for their children. I'm horrified.

    Chronic static encephalopathy is another name for cerebral palsy.

    Thank the God of Quads I had/have the parents I have. They would never have considered such drastic measures for any reason for me.

  4. #584
    Quote Originally Posted by cass
    wise,

    i understand what procedures were done (except i think you are wrong about the ovaries). my point was i don't think the intent was sterilization because she's disabled. obviously that would be wrong.

    the biggest concern i would have with this whole thing is the high dose estrogen treatment.

    i'm still not willing to take sides on this one. i honestly cannot say i could judge one way or the other.
    Cass, you are right. They did not take her ovaries. My initial reaction to this story was similar to yours. The more I thought about it, however, the more I became convinced that this was not only a bad decision but one that should not be repeated, for the following reasons.

    • First, it sets an unfortunate precedent and example that other parents may try to emulate. The parents did not make this decision only for themselves, the published paper suggested that this procedure may be carried out in other children, and the parents published a blog on internet to encourage other parents to do such a procedure. By publicizing their decision, the parents not only have given up whatever rights that have towards privacy on this issue but by identifying themselves and their daughter ultimately breached Ashley's right to privacy.

    • Second, if Ashley were not mentally retarded, none of these actions would have been taken. So, the question is whether mental retardation justifies sterilization, removal of breast buds, and high estrogen treatment to stunt her growth. In my opinion, I do not think so. If Ashley has painful menses, then perhaps hysterectomy might be justified. If Ashley developed large breasts and they are painful or difficult, removal of her breasts might be justified. However, both of these were theoretical fears. But, what really swayed me was the question whether sch procedures would ever be allowed on somebody who was not mentally retarded. If a hysterectomy, removal of breast tissues, and high-estrogen therapy had been done to a child with spinal cord injury, to make her easier to care for, so that she would not have to be institutionalized, we all would have been absolutely and totally revulsed. The actions would have been illegal and unethical. Yet, we would condone such actions on a child with mental retardation. I strongly disagree that mental retardation is sufficient justification for such actions.

    • Third, the reasoning of the bioethicists involved in the decision was flawed, in my opinion. On January 11, 2007, Dr. Douglas Diekema gave an interview to CNN. He is the director of Education at the Treuman Katz Center for Pediatric Bioethics in Seattle, Washington. He led the ethics panel that approved the decision to remove Ashley's uterus and breast buds, and the growth attenuation therapy. The interview is http://www.cnn.com/2007/HEALTH/01/11...ist/index.html

    After having read the interview very carefully, I believe that Dr. Diekema and the ethics committee committed two grave errors of judgment. The first was their failure to require the doctors and the parents to show benefit of these procedures for Ashley. When asked what was most troubling to the ethics committee, Dr. Diekema said that the committee struggled to understand what potential troubles might come to a girl that had attentuated growth, if "someone in Ashley's position for example, ever really care if they were 12 inches shorter?" This is a particularly sad commentary because the committee failed to ask the question what potential benefits might come to Ashley. The second was his repeated assertion that Ashely will never change from her status.

    Diekema: When you look at the growth attenuation, the primary benefits are by being a smaller girl, it will be easier for people to lift her, and will allow her to receive a more personal level of care from her parents for a longer period of time. They really want to be able to pick up their daughter and give her a hug and put her in a chair. It will be easier for them to move her to the car and go on outings rather than thinking about leaving her behind with a caretaker when they go on vacation. As far as removing her uterus with a hysterectomy, there are many profoundly disabled children who are traumatized by menstruation. They don't understand why there is blood coming from that part of their body, and it's impossible to make them understand. Unlike a normal 11- or 12-year-old, you can't explain to them this is a normal part of your development. The family wanted to spare Ashley that drama. Ashley's a little girl who already had experienced being terrified of blood.
    It sounds like a lot of excuses to me, many hypotheticals and benefits for the parents and not for the child. I do not judge the parents at all. But, in my opinion, the ethics panel failed in their duty to the child. These are irreversible surgical procedures that are unnecessary, that cater primarily to the fears of the parents, and that primarily benefit the parents and not the child.

    Finally, Dr. Diekema said:
    The expectation is that her cognitive development will remain where it's been her entire life. The treatment she underwent will have no impact whatsoever on that development. I think it's important to note the committee felt very strongly that there were certain aspects of Ashley's condition that justified this sort of treatment, that her condition would not change.
    So, what is the scientific basis of this statement that everybody seems to be accepting? Is it true that a person at age 9 with Ashley's condition will not develop at all? Is it true that the treatment that she underwent had no impact "whatsoever on that development". What aspects of Ashley's condition justified this sort of treatment?



    I submit that Dr. Diekema does not have a scientific basis for his statements, that he does not know that she will not have any further brain and cognitive develoment, and that he does not know that the treatment she underwent will have no impact on her development. Many people have written articles about Ashley and I am profoundly disturbed by the repeated unsubstantiated statements such as "her brain literally stopped growing shortly after she was born", "she has a mental age of a 3-month old"... (Source).

    So, let me ask a question that everybody seems to be avoiding. Is it true that people like Ashley have arrested brain development? If one reviews the literature of cognitive development of mentally retarded children, this concept is false. It is difficult to predict the development of children, even with well-known genetic disorders such as fragile X syndrome (Source). All retarded children do continue to have brain development. The statement that they do not by both the ethics panel and in the media is simply not justified by any scientific study. These are false statements and I am very disappointed that Dr. Diekema repeated them.

    The American Association for Mental Retardation (AAMR) lists five assumptions that they consider "essential to the application of the definition" of mental retardation (Source).

    The AAMR Definition of Mental Retardation

    Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills.

    This disability originates before age 18.

    Five Assumptions Essential to the Application of the Definition

    1. Limitations in present functioning must be considered within the context of community environments typical of the individual's age peers and culture.

    2. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors.

    3. Within an individual, limitations often coexist with strengths.

    4. An important purpose of describing limitations is to develop a profile of needed supports.

    5. With appropriate personalized supports over a sustained period, the life functioning of the person with mental retardation generally will improve.

    ©2002 American Association on Mental Retardation.
    A editorial in the Archives of Pediatrics & Adolescent Medicine by Jeffrey P. Brosco, MD PhD of the University of Miami opined:
    http://archpedi.ama-assn.org/cgi/con...ll/160/10/1077
    In this historical context, the proposal to radically alter the growth patterns of a child with severe disabilities demands the utmost scrutiny and, if implemented, the most thorough safeguards and protections.

    Finally, and most broadly, does the proposed treatment do justice to the scope of the problem? American society in general, and the medical community in particular, has traditionally sought simple technical fixes for seemingly intractable problems, which often combine biological and social aspects of human existence.5 In the end, what might be most distressing about attempts to shorten children with profound disabilities and thus lighten the load on their parents is not only that it might not work or cause undesired adverse effects or be misused; no, more distressing is how this solution fails to situate the plight of these parents, struggling to care for their children, in the larger context of a society failure to provide adequate social support in this most admirable of undertakings. Without this broader reframing of the core predicament, high-dose estrogen therapy to prevent out-of-home placement simply creates a new Sophie's Choice for parents to confront, where neither letting the child grow unchecked nor imposing shortness is without peril. If we as a society want to fundamentally revise the nature of the harrowing predicament that these parents face, then, in the end, more funds for home-based services, not more medication, is what is called for.

    As Lee and Howell argue in their recounting of the history of hormone therapy for attenuating growth in tall girls, judgments regarding the appropriateness of medical therapy reflect broad appraisals of social and political values as well as specific individualized assessments of health risks and benefits. Treating girls who had idiopathic tall stature with high-dose estrogen arose as a practice in the mid-20th century in the United States, conforming to then prevailing expectations that adult women would fulfill certain gender roles, and declined starting in the 1970s with the rise of the feminist movement. Similarly, the appropriateness of attenuating growth in children with profound developmental disabilities will be judged not only in the privacy of clinical offices or within the confines of institutional review boards but also in the social-political context of both the disability rights movement and the woefully impoverished options for high-quality long-term residential care of children or adults with profound developmental disabilities.

    Although we believe that attempts to attenuate growth are ill advised, we applaud Gunther and Diekema for publishing this case report. By focusing on a critical issue and beginning the debate, they help to advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. If high-dose estrogen treatment is on the right track, the collective community response will bestow general approval on growth attenuation; if not, the criticism may suffice to proscribe this mode of treatment. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities.
    It does not seem to me that this case was provided the necessary scrutiny, safeguards, and thoughtfulness that it deserved.

    Wise.
    Last edited by Wise Young; 02-06-2007 at 09:30 PM.

  5. #585
    Quote Originally Posted by Andy
    ....Shudder

    You mean that this entire line of debate was worthless?
    Nope. If you read all the posts in this thread, you'll see that the entire debate wasn't about her ovaries. For those who opposed it, the debate was about medical ethics, medical experimentation, disability rights, basic and fundamental human rights, eugenics policies, the ableist hierarchy, the abuse and dehumanization of disabled children and societies higher tolerance towards parents who abuse their disabled children. "The Ashley Treatment" and its implications involve so much more than a pair of ovaries.


    Yeah, it is a real shame that this happened. It is a real shame that genetic anomolies that would have 0 chance of survival in nature have been mercilessly subjected to survival in todays society by medical technology. Too bad those that have been subject to this 'care' are warehoused in squalor until they finally expire. Maybe the parents dont want to take this path for their child and did the best thing they could think of with the cards they were dealt?
    Andy, seriously. SCI's have a 0 chance of survival in nature too. We owe our existence to medical advances. The survival rate of SCI's prior to WWII was very low if not 0. People born with CP, MS and SP are genetic anomalies who would not live if not for medical advances yet they value their lives. People born with predispositions to diabetes and asthma would not survive if not for medical advances either and they value their lives as well.

    For us to compare the Ashley issue to, let us say, SCI, and say they are comparable...well, best of luck convincing others of that one.
    People with physical disabilities are comparable to people with developmental disabilities in terms of social perception and social status. We occupy the last rung on the ableist hierarchy. Eugenics proponents applied the same policies to the physically disabled as they did to the developmentally disabled. The same laws preventing them from becoming participating members in society were applied to us. We may see ourselves as separate and distinct but society often doesn't, even today.
    Last edited by antiquity; 02-07-2007 at 04:27 AM.

  6. #586
    Quote Originally Posted by Wise Young
    After having read the interview very carefully, I believe that Dr. Diekema and the ethics committee committed two grave errors of judgment. The first was their failure to require the doctors and the parents to show benefit of these procedures for Ashley. When asked what was most troubling to the ethics committee, Dr. Diekema said that the committee struggled to understand what potential troubles might come to a girl that had attentuated growth, if "someone in Ashley's position for example, ever really care if they were 12 inches shorter?" This is a particularly sad commentary because the committee failed to ask the question what potential benefits might come to Ashley. The second was his repeated assertion that Ashely will never change from her status.

    It sounds like a lot of excuses to me, many hypotheticals and benefits for the parents and not for the child. I do not judge the parents at all. But, in my opinion, the ethics panel failed in their duty to the child. These are irreversible surgical procedures that are unnecessary, that cater primarily to the fears of the parents, and that primarily benefit the parents and not the child.

    <snip>

    It does not seem to me that this case was provided the necessary scrutiny, safeguards, and thoughtfulness that it deserved.

    Wise.
    I agree 100% - the physician and the ethics board failed Ashley and the parents. Thank you.

  7. #587
    Quote Originally Posted by antiquity
    People with physical disabilities are comparable to people with developmental disabilities in terms of social perception and social status. We occupy the last rung on the ableist hierarchy.
    I have to say something here. I've read too many posts that contain comments like these. I can truly say that I have not once in my life experienced any form of active discrimination in regards to my disability. That doesn't mean that I do not believe such discrimination exists or that it should not be dealt with, but I have to say that I have a real problem with your generalities and assumptions when it comes to AB people. They just do not reflect my reality or that of most people I know.

    I honestly believe that architechtural barriers are the greatest challenges we face and those are due to ignorance of the need for such to be changed, and NOT an active fear or dislike of people with disabilities. I can't help but think that the way you view society in general and the way you deal with AB people must impact the way they deal with you. If you go looking for prejudice, you will most certainly find it.

    C.

  8. #588
    Wise: So, let me ask a question that everybody seems to be avoiding. Is it true that people like Ashley have arrested brain development?

    First, it seems obvious to me by the way the parents describe Ashley and their interactions with her that she does not have the mind of a three month old.

    I have a 23 year old son with Down syndrome and fetal alcohol effect that tests to have the mind of a three year old. He cannot remember more than two things in sequence, he cannot do the simplest memory game, he can not correctly identify which is different when 3 like and 1 unlike items are presented to him. He cannot read, count, or think abstractly. This is how he tested when he was 6 years old. IQ 43. Nothing has changed.

    Except he cooks 50% of the meals in our household without assistance, does all his own laundry, provides care for 2 rabbits, gets himself up for school (in Michigan special ed kids go to school until 26) and off completely on his own, has his own business selling t-shirts, avidly watched the Superbowl, and is already campaigning for Hillary Clinton. None of these things was he capable of or interested in when he was 6 and yet the testing of his brain is unchanged. IQ: 43.

    A few things that have changed recently are that this past summer were he started to use clauses in his sentences, he seemed to be able to read a few words, and he began to show anger when negative consequences were presented to him. This demonstrates intellectual growth. So I asked that he be tested this year even though it was not required for school. Same as usual - no change. Same IQ since age 6.

    So is this evidence of arrested brain development or do we have to think of intelligence differently?

    Would Ashley always test as a three month old? Would that mean that she always experienced her world as a three month old?

    How many untethered lives are we going to sacrifice in the name of the "Ashley Treatment"?

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

  9. #589
    Quote Originally Posted by Tiger Racing
    I have to say something here. I've read too many posts that contain comments like these. I can truly say that I have not once in my life experienced any form of active discrimination in regards to my disability. That doesn't mean that I do not believe such discrimination exists or that it should not be dealt with, but I have to say that I have a real problem with your generalities and assumptions when it comes to AB people. They just do not reflect my reality or that of most people I know.

    I honestly believe that architechtural barriers are the greatest challenges we face and those are due to ignorance of the need for such to be changed, and NOT an active fear or dislike of people with disabilities. I can't help but think that the way you view society in general and the way you deal with AB people must impact the way they deal with you. If you go looking for prejudice, you will most certainly find it.

    C.

    Well, prejudice and discrimination against the disabled is real and does take place irrespective of whether one "goes looking for it" or not. The data and stats are there which I can post if you'd like. Specifically, I was referring to societal perceptions of (visibly) disabled people and the ableist hierarchy which places those with disabilities on a lower social rung than themselves. It was a response to Andy's comment about SCI not being the same as mental retardation which it isn't of course but the perceptions held by AB's are often different from ours. We may make those distinctions but society often doesn't. I'm glad you've never encountered negative attitudes or ignorance related to your disability or had it impact your life but those perceptions certainly exist. Here's a definition of ableism:

    Ableism

    A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.

  10. #590
    Quote Originally Posted by Tiger Racing
    I have to say something here. I've read too many posts that contain comments like these. I can truly say that I have not once in my life experienced any form of active discrimination in regards to my disability. That doesn't mean that I do not believe such discrimination exists or that it should not be dealt with, but I have to say that I have a real problem with your generalities and assumptions when it comes to AB people. They just do not reflect my reality or that of most people I know.

    I honestly believe that architechtural barriers are the greatest challenges we face and those are due to ignorance of the need for such to be changed, and NOT an active fear or dislike of people with disabilities. I can't help but think that the way you view society in general and the way you deal with AB people must impact the way they deal with you. If you go looking for prejudice, you will most certainly find it.

    C.
    I'm wondering if maybe you are blind to it? I'm not trying to be mean. I have a hard time believing that it's something you've never experienced.

Similar Threads

  1. Replies: 1
    Last Post: 02-09-2007, 01:56 AM
  2. Wiped out by the wait
    By Max in forum Ability & Disability News
    Replies: 0
    Last Post: 06-01-2003, 10:39 AM
  3. Replies: 0
    Last Post: 09-20-2002, 12:27 PM
  4. Millions turn to disability benefits
    By antiquity in forum Health & Science News
    Replies: 0
    Last Post: 09-03-2002, 04:08 PM
  5. The language of clinical trials
    By antiquity in forum Cure
    Replies: 1
    Last Post: 07-27-2001, 09:44 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •