tag:blogger.com,1999:blog-28040139.post1850194722860873675..comments2023-07-25T09:25:34.293+01:00Comments on The Voyage: The mistreatment of Ashley XSharon McDaidhttp://www.blogger.com/profile/13550156204691696968noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-28040139.post-48340377164360202832007-01-30T10:04:00.000+00:002007-01-30T10:04:00.000+00:00People have feelings..who is to say that she canno...People have feelings..who is to say that she cannot feel...Asley is like us, a human being.Created by the same God, and special in his very own eyes.Eunicehttps://www.blogger.com/profile/12172967156149336869noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-20295117419783397912007-01-30T10:01:00.000+00:002007-01-30T10:01:00.000+00:00They are denying the child-a fellow human being th...They are denying the child-a fellow human being the right to live, the right to be as normal as she can be-her right to be human.It is inhumane to change the course of nature,and eridicate all hope for miricles.Many a time, doctors have prophesized the life span of patients,proclaiming that there is nothing modern medical technology can do for them.However many have lived past the prophezied time nd lived life to the fullest.Asley x once had a hope.But now it no more.<br />Is this really Love?Eunicehttps://www.blogger.com/profile/12172967156149336869noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-66663149548796194622007-01-11T23:12:00.000+00:002007-01-11T23:12:00.000+00:00you have no right to judge Ashley's parents.They d...you have no right to judge Ashley's parents.They did what they thought best.Obviously,as they say, they had no trouble making that decision...<br />I am a single wookring mother or severely disable boy, who is adorable and although he is over 2 years old, his development is like a newborn and cannot do anything by himself.<br />I am doing my best to teach his little brain and get him involved with the best care, Special Needs school, therapists , doctors and neurological treaments (he has Epilepsy- 3 seizures a day and takes 3 different medicines for it)- But most of all I love him and accept him for just how he is.I will never ever intrude in his pure Angelic body like this..and like you say i hate the term ' Pillow Angel'- it is disturbing because this is the opposite that I am working so hard for my son.I want him to be as mobile and have as much normal life as possible.I know as he get bigger and heavier it will get hard.However, I am grateful for every precious moment I share with him and who knows! One day he may wake up and prove all doctors wrong! He may walk and talk and hold a toy in his own little special way! Love is a healer.Unconditional Love.<br />I hope my sweer son and Ashley may never suffer or be in pain and feel all the love their parents have for them...<br /><br />To all the 'Peace Angels' outthere and their loving carers xxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-28040139.post-87675360126461025832007-01-08T03:40:00.000+00:002007-01-08T03:40:00.000+00:00"The girl cannot speak or feed herself so out with...<i>"The girl cannot speak or feed herself so out with the tongue and the teeth! She cannot move her arms or legs so let's amputate. Away with unnecessary organs!"</i><br /><br />Why not?Mark Desmaraishttps://www.blogger.com/profile/01443357631434893898noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-85219982510902374642007-01-08T03:29:00.000+00:002007-01-08T03:29:00.000+00:00"Generally speaking, not having unneccesary surgur...<i>"Generally speaking, not having unneccesary surgury IS a right."</i><br /><br />That doesn't entirely make sense. Do you mean 'not being forced to have unnecessary surgery' or 'not ever having unnecessary surgery'?<br /><br />If the former, she is being 'forced' to have this surgery in the same way that she is 'forced' to eat every day. Her entire existence is forced upon her, sadly.<br /><br />If the latter, then that's even more absurd. Of course people can have unnecessary surgery if they want.<br /><br /><i>"Hell, I don't feel pain properly and have a family history of girly cancers, should we remove my plumbing? I think not."</i><br /><br />Well, if you wanted to, you could. I wouldn't suggest it, but it's your choice, not mine.<br /><br /><i>"Note also that people with extraordinarily low muscle tone (like Ashley) and with neurological disorders (again, like Ashley) are astronomically more likely to have complications from anesthesia, just from a practical point of view. And unlike me (also having anesthesia Issues, namely anesthesia awareness) SHE can't say "Hey jerkwad, I can feel everything you're doing so drug me more" or, alternately, "I CANT BREATHE"."</i><br /><br />That is certainly a risk, but since neither of us were there when the surgery was performed, I fail to see how we can comment on whether or not proper procedure was followed. All we can do is debate the ethics of the procedure itself.<br /><br /><i>"And it'd be just so wrong for me to even suggest that a dark part of a parent's soul let their mind wander to the place of 'maybe she'll die on the table', right?"</i><br /><br />It does seem both cruel and unfounded.<br /><br /><i>"And it doesn't sound like they did an adequete physical therapy assessment, nor a particularly good genetic workup (usually people want to know the CAUSE of these things!)."</i><br /><br />What part of it lead to this conclusion?<br /><br />Simply because they did not mention it does not mean that it did not happen.<br /><br /><i>"Let's ask Ashley."</i><br /><br />If only we could, then we could know what she truly wanted. However, in lieu of that, we are forced to entrust others with the right to make these critical decisions for her.Mark Desmaraishttps://www.blogger.com/profile/01443357631434893898noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-27480525321159999792007-01-07T22:31:00.000+00:002007-01-07T22:31:00.000+00:00lgwA 'treatment' as radical as this needs to be ri...lgwA 'treatment' as radical as this needs to be ripped to SHREDS by MULTIPLE ethicists, disabilty advocates (with and without disabilities), and general people before it is even CONSIDERED ideally.<br /><br />Obviously that didn't happen. It hit a medical journal in October. Ashley was anonymous there. Her PARENTS are selling it like it's the best thing since heart surgury or something. It's like they aren't just JUSTIFYING it but saying "hey! If more people do this then you CAN'T say what we did was disgusting because you have to say it to 100 people!" <br /><br />But I will say it to 1,000,000 if I have to. I wish Ashley well. I think her parents and doctors need to retake ethics.Neurodivergent Khttps://www.blogger.com/profile/02815685510033244185noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-13297898550515737082007-01-07T22:26:00.000+00:002007-01-07T22:26:00.000+00:00Hi Sharon
I am with you on this one. The girl cann...Hi Sharon<br />I am with you on this one. The girl cannot speak or feed herself so out with the tongue and the teeth! She cannot move her arms or legs so let's amputate. Away with unnecessary organs! <br />What utter crap!<br />I work with people who have similar disabilities. They have personalities. We communicate. We have fun together. They are my friends. I would never do that to a friend to make my life easier.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-28040139.post-19673695201133812932007-01-07T21:11:00.000+00:002007-01-07T21:11:00.000+00:00Qalballah, I think this should be open to public d...Qalballah, I think this should be open to public debate. It's not backstabbing, this is all in the public domain. The parents went public when they wrote their blog. Have you seen it? There's a long list of reasons as they attempt to justify what was done to Ashley as well as loads of her photos. Their other children have had their faces blacked out.<br /><br />They also have written;<br />"Clearly, the “Ashley Treatment” is not for all disabled kids. Our daughter’s condition pointed to a clear decision where the benefits far outweigh the risks and short term discomfort associated with surgery. Families of other kids may likewise find the “Ashley Treatment” to be the right approach for them. It is our hope that this treatment becomes well-accepted and available to such families, so they can bring its benefits to their special needs child if appropriate and at an optimal age in order to obtain the most benefits."<br /><br />This <i>has</i> to be discussed now before this procedure becomes common place. With so much of public reaction showing that people back these parents, this could happen more often. That, IMO, would be dangerous. We need to get these points out and explain why it's wrong. <br />Also in the parent's blog, they wrote;<br />"At the same time we’re surprised at the volume and magnitude of the critical comments. We carefully reviewed these comments: they seemed to us to be gut reactions without depth or rational consideration of the situation, the treatment, or the motivation behind it, which we hope this article sheds more light on."<br />I'd like to show that the reaction of the people who've commented here are considered and rational. The article just she light on their misogynistic and disablist reasoning.Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-15820870996744076002007-01-07T20:46:00.000+00:002007-01-07T20:46:00.000+00:00I really think this is a matter for the family and...I really think this is a matter for the family and I only wish them well. It should not be a backstabbing public debate.IMOAnonymoushttps://www.blogger.com/profile/05025492709452476763noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-92103005158939695482007-01-07T16:39:00.000+00:002007-01-07T16:39:00.000+00:00You have to ignore Malky, s/he's been making the s...You have to ignore Malky, s/he's been making the same points everywhere and there's no point in reasoning with him/her since s/he's already made his/her mind about who intellectually disabled people are. The fact is, ANY of us could end up with the same disabilities as Ashley, all it would take is a serious head and spine injury. It disturbs me to see people who never realize at some point in their life they will also have disability issues. <br />Thanks for your comment by the way, and I am also glad to see more and more people with similarly disabled people in their lives speaking up. If we don't speak up on behalf of their rights, who will?Thirza Cuthandhttps://www.blogger.com/profile/06584157711576486281noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-73764519050454234142007-01-07T14:13:00.000+00:002007-01-07T14:13:00.000+00:00Thanks for making all those great points, Kassiane...Thanks for making all those great points, Kassiane. I can see why you wouldn't want to have anything to do with that hospital now too. <br /><br />Ebohlman, I get your point about the 'Perpetual Virgin' thing from the way they spoke about her on the parents blog, combined with the photos, the 'Pillow Angel' name, and the beatifying of her saintly presence.<br /><br />Larry, female genital mutilation is barbaric, and it's sad that more people who are aware of <i>that</i> can't see the terrible harm in <i>this</i>.<br /><br />Allie, some people seem to ignore the risk involved in this surgery. They say the '3 month mind' thing means if the parents think it's for the best, then that's all that matters. Kassiane has given an excellent dismissal of that argument.<br />I have also tried to imagine my daughter being put through this and it is horrifying. <br /><br />It would be terrifying if this was to become a common-place solution. Many service providers might thinks it's a great idea; a one-off surgery and hormone regime would save money to be spent on proper equipment and support.<br /><br />The parent's blog actually sounds a bit like a sales pitch for this, they say they want to enable other parents to do the same as them.Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-7006734123063772162007-01-07T06:43:00.000+00:002007-01-07T06:43:00.000+00:00Generally speaking, not having unneccesary surgury...Generally speaking, not having unneccesary surgury IS a right. Hell, I don't feel pain properly and have a family history of girly cancers, should we remove my plumbing? I think not. It's called regular exams. They aren't fun for any woman but last I checked NEITHER IS RECOVERY FROM SURGERY.<br /><br />Note also that people with extraordinarily low muscle tone (like Ashley) and with neurological disorders (again, like Ashley) are astronomically more likely to have complications from anesthesia, just from a practical point of view. And unlike me (also having anesthesia Issues, namely anesthesia awareness) SHE can't say "Hey jerkwad, I can feel everything you're doing so drug me more" or, alternately, "I CANT BREATHE". And it'd be just so wrong for me to even suggest that a dark part of a parent's soul let their mind wander to the place of 'maybe she'll die on the table', right?<br /><br />And then the testing...<br /><br />We DO know that they didn't do a reliable method of testing her mental development. If her praxis is as bad as they say it is, it doesn't exist. And it doesn't sound like they did an adequete physical therapy assessment, nor a particularly good genetic workup (usually people want to know the CAUSE of these things!). THAT is all apparent, as well as the utter lack of a good SLP communicative assessment. <br /><br />It's just so much EASIER to accept the 3months guess and live with a perpetual infant. Then doing dehumanizing things isn't as BAD, 3 month olds arent SENTIENT. <br /><br />Or are they?<br /><br />Let's ask Ashley.Neurodivergent Khttps://www.blogger.com/profile/02815685510033244185noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-34352732516992277432007-01-06T20:20:00.000+00:002007-01-06T20:20:00.000+00:00"Supporting the rights of disabled people means AL..."Supporting the rights of disabled people means ALL disabled people, not just the ones who yell for you to sit down, shut up, and listen."<br /><br />There is a difference between "having rights" and "never getting surgery".<br /><br />Someone has to make the decisions. Nine times out of ten, that would be the person who is most affected by that decision (Ashley, in this case). But when that person cannot make those decisions for herself, that obligation needs to passed on to somebody.<br /><br />I am not saying that Ashley has no rights. I am saying that Ashley's parents have the right to make this sort of decision for her.<br /><br />"As for what body parts are or are not important to Ashley, I assume no one asked her. they don't know HOW. They didn't TRY to know how."<br /><br />You don't know that. Neither of us know what tests they have performed or how they reached the conclusions they did.Mark Desmaraishttps://www.blogger.com/profile/01443357631434893898noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-38630500378857167032007-01-06T15:11:00.000+00:002007-01-06T15:11:00.000+00:00I find this really difficult to get to grips with....I find this really difficult to get to grips with. I can understand how hard it must be to feel it getting harder and harder to care physically for your child. But this does look so much like an attempt to keep someone as a 'perpetual child' and it was not done at no risk to her life. Surgery is never without risk and that is why you need a medical reason to do it and the clear informed consent of anyone undertaking cosmetic procedures. <br /><br />In this case there was no medical reason and it seems to be the ultimate example of seeing a disabled person's body as the 'problem' and 'medicine' as the solution. I think we, as a species, should respect the integrity of everyone's body and put our ingenuity into technology to enable everyone to participate in social life as much as they wish to.<br /><br />Personally I can't understand how 'menstrual cramps' are such a big issue and yet a hysterectomy (major surgery) was not? The thought of my nine year old going through such a major assault on her body makes me feel ill. Likewise, going through puberty (a gradual, developmental process) or having major surgery and massive hormone doses - which sounds more physically and emotionally painful? This was major intervention in a healthy body. I don't condemn any parent who is doing their best but I think we ALL need to be worried by such action in a world that often views disabled people as the problem and god like physicians as the answer.Alliehttps://www.blogger.com/profile/07432518528835330361noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-90788958805320790552007-01-06T14:47:00.000+00:002007-01-06T14:47:00.000+00:00I blogged this. Sharon, you set me thinking and I ...I blogged this. Sharon, you set me thinking and I need to think some more. My gut reaction is that this is just horrific. <br />the blog is: http://ethicallyspeaking.blogsome.com/2007/01/06/ashley-x-pillow-angel/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-28040139.post-14330542334655284962007-01-06T04:54:00.000+00:002007-01-06T04:54:00.000+00:00Uh, Malky, you just showed how little you understa...Uh, Malky, you just showed how little you understand disability rights.<br /><br />Supporting the rights of disabled people means ALL disabled people, not just the ones who yell for you to sit down, shut up, and listen. People with COGNITIVE disabilities, not just people who use chairs and suchlike. PEOPLE LIKE ASHLEY. <br /><br />You also have yet to explain how they demonstrated her cognitive capacity. An MRI won't do it. An EEG won't do it. There's no praxis-free test of cognitive skills on the market that I'm aware of. So where's the eye gaze board? Oh wait. They didn't try that because 'static encephalopathy' means 'won't develop'. Wonder if the kid I know who has the same dx knows that, she progresses fine...<br /><br />As for what body parts are or are not important to Ashley, I assume no one asked her. they don't know HOW. They didn't TRY to know how.Neurodivergent Khttps://www.blogger.com/profile/02815685510033244185noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-48425765367896528782007-01-06T03:58:00.000+00:002007-01-06T03:58:00.000+00:00Sharon, thanks for the shout and writing such a fa...Sharon, thanks for the shout and writing such a fabulous post.<br /><br />My mind is still boggling over this. They might as well kill her as cut pieces off at a time.<br /><br />Much more convenient, I'd say.Attila the Momhttps://www.blogger.com/profile/02158308703617226652noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-84409317241642418052007-01-06T00:52:00.000+00:002007-01-06T00:52:00.000+00:00"Who doesn't really get disability rights"?
I beg..."Who doesn't really get disability rights"?<br /><br />I beg to differ. I completely back the rights of disabled people, but when it comes to people who are not biologically capable of making decisions for themselves, the decisions have to be passed off to the guardians who are responsible for that person.<br /><br />This sort of decision is up to the parents to make, and it doesn't cross any sort of social boundary since it is a reasonable conclusion to reach, given that the surgery does not remove anything that has any value to Ashley X.<br /><br />"thinks that a good reason not to amputate a person is that 'people tend to be socially uncomfortable around amputees'."<br /><br />What, exactly, is the problem with removing useless organs?Mark Desmaraishttps://www.blogger.com/profile/01443357631434893898noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-58303636032625848222007-01-06T00:08:00.000+00:002007-01-06T00:08:00.000+00:00Oops, look like I tried to have a rational discuss...Oops, look like I tried to have a rational discussion with someone who really doesn't get disability rights and thinks that a good reason not to amputate a person is that 'people tend to be socially uncomfortable around amputees'. <br />Nuff said. <br /><br />I have an autistic son, does anyone really think I give a fig about making people socially uncomfortable.Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-89731369731666130662007-01-05T23:34:00.000+00:002007-01-05T23:34:00.000+00:00"Perhaps that's exactly what they did; they don't ..."Perhaps that's exactly what they did; they don't know what happened to her so have no way of giving an accurate prognosis for her future."<br /><br />Perhaps it is. However, once again, I am going to have to stand behind the assumption that these are medical professionals and not complete idiots.<br /><br />"And as for how this improves her life, as others have said, amputating her (also unused) legs would make her lighter and smaller too."<br /><br />That's true, it would. And if her legs should ever present a serious problem in the future, I wouldn't complain if they removed those as well.<br /><br />However, given that people tend to be socially uncomfortable around amputees, I don't think that amputation would necessarily be wise.<br /><br />"It's just wrong!"<br /><br />That is never, <i>ever</i> an acceptable reason. Things are never "just" wrong. They are wrong because they <i>hurt people</i>. <br /><br />Hurting people is wrong. Surgery is not.<br /><br />"I have to take issue with your claim that 'puberty is a painful issue'. Should I try to save my daughter from the trauma of puberty too?"<br /><br />Absolutely. Of course, unless your daughter is a near-vegetable, I don't know of way to do so that wouldn't be physically, socially and mentally crippling.<br /><br />Ashley X, however, is already crippled. The damage is done.Mark Desmaraishttps://www.blogger.com/profile/01443357631434893898noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-82620615427848704742007-01-05T23:08:00.000+00:002007-01-05T23:08:00.000+00:00Malky said
'I sincerely doubt that these educated...Malky said <br />'I sincerely doubt that these educated professionals just looked at the girl and said, 'Well, we dunno whether or not her brain works, so we're just gonna assume it's broken.''<br /><br />Perhaps that's exactly what they did; they don't know what happened to her so have no way of giving an accurate prognosis for her future.<br /><br />And as for how this improves her life, as others have said, amputating her (also unused) legs would make her lighter and smaller too. It's just wrong! <br /><br />I have to take issue with your claim that 'puberty is a painful issue'. Should I try to save my daughter from the trauma of puberty too?Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-87516212463821333872007-01-05T22:50:00.000+00:002007-01-05T22:50:00.000+00:00An awful lot of Rett parents think the mutilation ...An awful lot of Rett parents think the mutilation of Ashley is unthinkable. Read up on Rett if you want to know why that matters.<br /><br />As for her developmental level, if she has little purposeful movement, they CAN'T determine that. There is absolutely NO WAY without praxis. And if they find a way theyd more likely than not find out they were dead wrong. Again, see Rett Syndrome. <br /><br />I was scheduled to see a geneticist at Seattle Children's. I cancelled after jumping through thousands of hoops. This is why. Their medical ethicists have no...um...ethics. They mutilated a little girl to make her parents lives easier. At least until they find something else to complain about. Catholic hospitals for me (and yes, I actually ASKED each one I called what they thought about the Ashley treatment, as it is called, before I made the appointment).<br /><br />Truly disgusting.Neurodivergent Khttps://www.blogger.com/profile/02815685510033244185noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-11528951850664249872007-01-05T22:20:00.000+00:002007-01-05T22:20:00.000+00:00"I don't know where this 'mind of a 3 month old' s..."I don't know where this 'mind of a 3 month old' statement is coming from. How do they know?" <br /><br />MRI scans, perhaps. Or other ways that I'm not as familiar with.<br /><br />I sincerely doubt that these educated professionals just looked at the girl and said, 'Well, we dunno whether or not her brain works, so we're just gonna assume it's broken.'<br /><br />"But whether she does or not, the rights of a person with a severe developmental disability should still be protected. They should have protection from such mutilation for such spurious reasons."<br /><br />'Mutilation' and 'spurious reasons' are both incredibly subjective terms. Whether or not such a surgery is appropriate ought to be left up to, ideally, the person that is being operated on. If that person is not capable of making such a decision (as in this case) then it should be left up to that person's guardians, such as her parents and doctors. Which is exactly what happened.<br /><br />"I fail to see how it improves Ashley's life."<br /><br />Really? I thought that was fairly clear. An increase in size would make transporting her more difficult, meaning that it would have to happen less and would be a much less pleasant experience for everyone involved. In addition, puberty is is painful process (emotionally and physically), and one that now she won't have to go through.Mark Desmaraishttps://www.blogger.com/profile/01443357631434893898noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-22572658028154376202007-01-05T18:03:00.000+00:002007-01-05T18:03:00.000+00:00All I can say is Bonsai Kittens, there was an outr...All I can say is Bonsai Kittens, there was an outrageous at the notorious internet hoax http://www.museumofhoaxes.com/pranks/bonsai.html<br /><br />Yet this is legal?<br /><br />I would guess a significant proportion of Americans are against the cultural practice of female circumsision, which they would regard as barbaric, yet this is civilised?Larry Arnold PhD FRSAhttps://www.blogger.com/profile/05074432718592268750noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-30194307198419457292007-01-05T15:42:00.000+00:002007-01-05T15:42:00.000+00:00no one said it is the right choice for everyone bu...no one said it is the right choice for everyone but its right for them. you are obviously a stronger person emotionally than them and i admire you a lot for that i hope all goes well with you son and keep up the good workjohttps://www.blogger.com/profile/14494460169642442163noreply@blogger.com