Disability Studies, Temple U.: Sigh.

Friday, January 05, 2007

Sigh.

I didn't want to post about this story.

I don't make a secret of being a parent, but I'm not a momblogger and I only rarely mention my kids here (I think). However, the last 24 hours have seen a lot of pundits saying "Unless you have a child like this, you can't understand..."

Okay then. I have a child "like this": my son is eleven, on the verge of puberty (we presume), doesn't walk, doesn't talk, etc. etc. He's very small (under 40 lbs. right now), but that could certainly change in the next few years; he has a well-controlled seizure disorder, but that too could change in the next few years. When his cognition is given a number, it's given in terms of months, though I don't put much emphasis on that kind of assessment. We carry him a lot. He's hard to carry. He's not going to get easier to carry. The day may come when we need help.

And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.

And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way.

Postscript: Stories about parents who (quietly) find doctors to do appalling things to their disabled children do circulate among parents and teachers (and I imagine doctors and nurses and other professionals). I remember hearing long ago about a family that had their kid's vocal cords surgically altered because the kid couldn't talk, and the noises he (she?) did make were unpleasant to them. You hear stuff like this, sometimes. I generally hope and pray that they're urban legends, or at least distorted reports of something less troubling; when I heard about the Ashley case about a year ago, I wanted to believe it was one of those. But when a family puts up a website to explain their decision, that hope is surely lost.

UPDATE: Two more mothers who are speaking up--and they're already doing the heavy lifting:
Nufsaid
Dream Mom
and Thirza has an important point to make at Fit of Pique: "Not all caregivers are nice people." Too true.

47 comments:

Mike Dorn said...: Thanks for sharing your thoughts on this troubling story. It is difficult to fathom the thought process involved here. I'm glad that Nancy Grace is covering the story, and that Lawrence Carter-Long and Jeffrey Brosco were able to lend their expert commentary from two perspectives: Disability Studies; and History and Sociology of Science.
Transcript, http://transcripts.cnn.com/TRANSCRIPTS/0701/04/ng.01.html

I know very little about the bioethicist James Hughes, Executive Director of the Institute for Ethics and Emerging Technologies at Trinity College, Hartford CT. But if you go on their website, you can read for yourself the statement of board member George Dvorsky, who defends the actions of Ashley's parents. Tellingly, George is also Deputy-Editor of Betterhumans, co-founder and president of the Toronto Transhumanist Association. I wanted to leave a comment on his blog, but apparently they want me to become a "supporting or sustaining member" of the Institute first!
http://ieet.org/index.php/IEET/bio/dvorsky/
http://ieet.org/index.php/IEET/comments/1060/; 6:51 PM
Anonymous said...: From one MOM to another: I'm proud to say I know you, even if only online.

P.S. As soon as you have a free moment, we're still needing your mailing address. Thanks!; 8:09 PM
Jonathan Dresner said...: I can see the value of doing a lot to palliate problems, but multiple palliative surgeries?

I can't help but think that there has to be a downside to these "treatments": given that the child is not communicative, who will know what is lost, in terms of experience, sensation?; 12:22 AM
Anonymous said...: Thank you, Penny.
As a mom, as a person, I feel such sadness at this story, at the devaluation of the humanity of this child.
Janet; 12:34 AM
Anonymous said...: These parents have justified their self-serving thinkng to themselves, so they do not see the slippery slope they are headed down. Where does it stop? Limiting her food intake to keep her light weight? Covering her mouth, when she cries too long? Wrong is wrong is wrong!!

The 'unethical' committee of the hospital is also wrong in allowing this to happen. They have made this little girl a science experient-- the committee needs to be sacked!; 9:03 PM
Anonymous said...: Thanks to all who have posted comments on this difficult to fathom subject.

Particularly those of you who are parents/caregivers.; 10:48 PM
Anonymous said...: Thanks so much for this post! That defense-"You're not qualified to comment on this unless you're a caregiver" was just too much to take. So I really appreciate parents speaking out on this.; 1:43 AM
Anonymous said...: Michelle Dawson point out something I had missed, since when does being a "child" prevent a person from being sexually molested? She might even be more attractive as a "child" than a woman with breasts. It's just too sick to think what these people ordered up for their daughter.

And I have a very, very tiny disabled adult daughter (I am tall). I asked her if she would like it if she knew that I had made her little that way for my convenience. She was shocked at the idea. Genes made her little. Also, people talk to little people like they are children. This girl will never be talked to like an adult. Yes, they say she can't understand anything, but I doubt that.; 8:43 PM
Anonymous said...: More info here at Autism Diva blog

Please consider sharing this URL

http://www.autism-hub.co.uk/nih-response/
around, and please consider signing the petition, it has ramifications that can reach out to all disable people.

Please share the petition URL with academics and whoever else might have an interest in the dignity of human research subjects. The petition was written by an autism researcher who is also a parent of an autistic child.; 8:46 PM
Anonymous said...: Thanks to imfunnytoo and her efforts at spreading the word, Steve and I were able to catch CNN this evening.
We're glad you shared your feelings with us all in this post. "Sigh." We value your lessons as an expert in the field of Disability Studies. We especially value your opinions as a MOM.; 11:35 PM
Anonymous said...: This dad, who is already doing the carrying etc., is talking up too! I know I'm just preaching to the choir with the comments to this post, but I will add my two cents. I look at parenting a disabled child as fulling realizing all potentials, as much as possible and practical anyway. And with that in mind, trying to predict the future is really dangerous. My son too is non-verbal, can't walk etc. He's 14 and about 5'5" and a little over 100 pounds -- already taller than his mom. I hesitate to quantify his mental abilities with age labels, but suffice to say they are well below his years when they can be measured. But I think of what he has learned to do over the years that we never thought a possibility. A recent example -- use the toilet. Five years ago, when that project started, I had little hope. But they persevered at school and got us involved at home and he's pretty consistent now. But if we had decided he couldn't do it six years ago, when it really looked like he wouldn't ever, where would he be today? If some of the issues Ashley's parents feared had developed, then was the time to address them. This is a case when proactivity is not a good thing. I don't know them, and I don't wish to seem overly judgmental, but I think they're just very afraid of her growing up.; 9:34 AM
Penny L. Richards said...: Thanks for chipping in, Darren! And to everyone else for your kind words.; 9:56 AM
Anonymous said...: I hereby apologize for spreading the word. I've um changed my tune a little.

See the poll @ CNN.

They missed a choice for all of us with enough cognition/age to consent.; 3:19 PM
Mike Dorn said...: I agree - these instant polls on CNN are bogus. Also want to point readers to the DREDF perspective.; 3:01 PM
Anonymous said...: Ashley's parents did what they had to do to provide the best care that they were capable of to her.
The fact that people are up in arms about these parents making a choice ONLY THEY CAN MAKE, is stupid.
None of you have any idea what "dehumanizing" is. Obviously.

I know what it's like to take care of a child that will never know adulthood too. It's a huge burden no matter how much you love them.
Until you're in our places, you need to reserve judgement. Lest ye be judged yourself.; 8:06 PM
Anonymous said...: I just read an article on CNN.com this morning and how David who has severe cerebral palsy cannot understand why Ashley went through what her parents thought was right to keep her a child. For those who do not know what David is going through, he can't walk, talk or sit up by himself. But David you can blog. You must have so many wonderful abilities to go through life challenges and you have something you can do that Ashley is never going to be able to do. I do not know if it is right or wrong to keep a child small for the parent's convenience, but unless I am put into that position how can a person judge. David your parents must be so wonderful, but realise parents look after their children the best way they know how. I am sure Ashley's parents are doing the best they can and I am sure Ashley is well loved. And isn't the most important think - to be loved.; 8:17 PM
Anonymous said...: I have been working with individuals who experience disabilities for over 10 years. To ever imagine any parent, caregiver, guardian, etc. making this decision and then trying to attempt to justify it as being in the best interest of the person experiencing the disability is outragous. Ashley was born an American. She had the right to grow up. She had the right to go through puberity. She had the right to struggle with those natural life changes. Why? Because disability is natural too. I know many, many adults in very, very simular situations who are not well into their twenties, thirties, etc who believe it or not lived through it and are living well now. People who experience disabilites already are treated in a childlike, helpless nature. These 'parents' have not sealed the deal, cheapened the experience.; 9:03 PM
Anonymous said...: Sorry, I can't agree with those who are putting the parents down for doing this, even if you do have a child like this. I think they did what was good for their child. The reasons they gave for doing it have made alot of sense. Any surgery or medical procedure to improve the quality of one's life is good and if you look closely at the benefits, they far outweigh the "morality issue" of the situation. There really shouldn't even be a morality debate on it because there is nothing unmoral about getting whatever treatment needed to improve the quality of life for anyone. Stop putting these people down for doing something that was good for their child. It may not have been what you would have done, but that doesn't make it wrong.; 9:22 PM
Anonymous said...: You know I completely agree with Ashley's mom and her physicians. Cast aside your personal beliefs and think about Ashley a girl with the mind of an infant how would her mind be able to comprehend puberty and getting her period. I am a normal 15 year old girl and it is hard enough for me much less Ashley. I couldn't imagine being in her mom's postion and what she really needs is support not everybody trashing her and her family.; 9:29 PM
Anonymous said...: Posting here as a disabled woman. I have Cerbral Palsy and this story literally had me in tears for 2 hours! I was so lucky my CP was not worse. Very often people are severely mentally handicapped by this. I simply can't walk. And yet, tonight as I look at my husband and 2 year old daughter, I can't believe that had my case been more severe, someone might have been allowed to take my chance to be an adult, a woman and a mother from me without even having to ask. So...where IS the line when it's not okay?; 9:43 PM
Anonymous said...: I don't understand why we think that it is horrible to stunt this girls growth. Wouldn't being taller and fatter be a strain on the already fragile muscles and bones that most people who can't move have?? What is the point of getting upset with the removal of reproductive organs from someone who will never even understand that they miss them, knowing that a smaller body and thigs like not having breasts will make that person's life easier. When people affected with dwarfism want to go through surgery after painful surgery to make themselves even the slightest bit taller. No one shuns them for wanting to change their growth from what it was originally meant by God. Granted, these people don't always have others making the decision for them. But don't we as a society usually make that decision for them?? Treating them like outcasts just because they aren't over 5'? And if Ashley could decide for herself, don't you think that she would want it to be easier to lay down, and be propped up?? Wouldn't she want her weight and height to be less stressful on her already fragile frame? Not to mention the fact that her love for her parents would make her have a desire to make things easier on them to take care of her.; 10:34 PM
Anonymous said...: "someone might have been allowed to take my chance to be an adult, a woman and a mother from me without even having to ask. So...where IS the line when it's not okay?"

The line is drawn when the affected person is able to make choices for themselves. Since your mind appears too work like it should. You would never be a candidate. If what you deal with as a caregiver is a mindless hunk of flesh that you cherish and love for reasons of your own (and there is certainly nothing wrong with that) then you must make decisions that encompass the well being of the one you are tending. If a lack of growth will give the unfortunate a more comfortable lifestyle then do it. You are ultimatly the one who knows what your loved one truly needs. If your loved one is able to respond to your words or efforts that means there is a cognizant mind in that body and it must be consulted in all attempts to alter her/his environment. therefor the "Ashley treatment" would not be something to be used.; 11:00 PM
Anonymous said...: People with physical disabilities and moderate mental disabilities should pehaps consider that there are other levels including essentially being a human doorstop.
That, dear readers, does not mean YOU are, but projecting your vision of YOUR self onto another, different person in a different situation is simply dishonest.
We will all, barring the kind accident of a quick death, eventually be disabled! That's what age and entropy do.
Making some shrine of undisturbed suffering out of the other poor guy/gal so you can feel better about yourself or the different human you make care choices for is sadistic.
Reminds me of the medical folks who refused to increase my dying fathers pain meds because they didn't want to cloud his (destroyed by Alzheimers) thinking. Yes, let's force others to suffer so we can feel self-righteous!; 11:22 PM
Anonymous said...: I feel a lot of emotion has been directed towards the parents, but as a medical student at an academic medical institution, I am actually more disappointed in the physicians who agreed with her treatment. I do not understand how a physician can perform these operations on a child with so many preexisting challenges. Although it is true that removing the tissues would reduce her future weight and size, possibly improving the ease of living for both her parents and herself, I can't see why the doctors would subject her to the RISK, PAIN, and physical deformity associated with the surgery itself. Regardless of the outcome, surgery itself is a traumatic experience, especially a radical hysterectomy for a child who probably cannot adequately express physical pain or display the post-surgical discomfort. My own mother had the treatment option of a hysterectomy a few years ago due to uterine cancer, and that in itself was a difficult decision to make even in the face of a fatal disease. I cannot see how the physicians can so easily perform these surgeries out of "ease" or convenience. I think the bigger question is to think what Ashley would want if she were able to understand the situation and express her opinions. If you were a child with such pre-existing developmental difficulties that separates you from everyone else, would you want a treatment which only further distances you from those around you and having a normal development? Lastly, many argue that she will not even notice or miss puberty and her uterus. But you must also realize that she may not notice if you ridiculed her to her face or (to the extreme) performed euthanasia, but her unawareness does not make the action harmless or acceptable in the least. There are just so many reasons why these surgeries should not have performed that it is impossible to finish this in one comment, but I hope physicians, new and old, learn from this event regardless of the outcome.; 11:39 PM
Anonymous said...: I've been blessed with four healthy children. I can't even begin to imagine what it must be like to plan lifetime care for a child like Ashley. Remember, her parents know they will grow old, impaired, but her needs will never lessen.

They love their daughter and did, after consulting with specialists, what they felt was necessary. It couldn't have been easy. None of us have the right to judge them...even those of us who have faced similar challenges and made different choices.

Only they can try (operative word: try) to do what is best.

And that's what all parents do.; 11:45 PM
Anonymous said...: The problem is modern medicine can keep a turnip alive for many years i.e. 100 years ago this child would have died at a very young age as mother nature intended. But since we have to play God and keep the turnip alive then we also get to play God and choose when/how to trim the turnip when it grows in a way we deem unfit. Basically this treatment is ENTIRELY for the parents benefit and as such it does help the parents but please drop the delusion that it helps the vegetable because the vegetable would be best off with as little pain inflicted as possible i.e. let the vegetable die.; 12:05 AM
Anonymous said...: CNN: What are the benefits for Ashley?

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.

Am I the only person who noticed that every single reason that was given as a benefit for Ashley was actually a benefit for the PARENTS???? As far as her 'fearing blood' she most likely just fears being stuck with needles to draw blood i.e. how many infants 'fear blood'. The answer is NONE but many do fear being stuck with needles. So yeah this is PURE CRAP~; 12:16 AM
Anonymous said...: MDstudentinMD-You are a wise man and I thank you for your comments. I too think the physicians had a responsibility here. And are they speaking out now?

As I recall from the parents blog, they said the committee agreed to let the parents decide what's best for their daughter. That's different than agreeing that it's a good decision (and it's a cop out). Still, I think they had a responsibility to this six year old child. What makes it worse is that they should have known better.; 12:54 AM
OTE admin said...: People should read the original journal article prompting the controversy. It is one of the most disgusting articles I have ever read in my life. Ashley is basically a nonperson to the abusers, er, doctors, with no civil rights or bodily integrity whatsoever.

This was done for the sake of the parents' convenience, nothing more, nothing less. If this were a "normal" child here, it would be unthinkable to surgically mutilate him or her.

The doctors and parents need to be tracked down and prosecuted for child abuse, for this is what this is.; 1:00 AM
OTE admin said...: A lot of the posters here need to actually be around people with disabilities (and at all cognitive levels) to realize they are nothing but a bunch of bigots.

I can't believe people think they are effing superior to others because they are not in the same situation as "Ashley." But for the grace of God go they.; 1:03 AM
Anonymous said...: Here's a little insight from an actual disabled person. I was disabled at the age of 21 in a motor vehicle accident. I have lived my life for the past 20 years a high functioning quadriplegic. At the rehab hospital they advised my parents that I should have permanent nerve blocks to stop severe muscle spasms. Screw how I felt about it, I refused. This is the same story that "it would be easier for other people to deal with me". Well, let me tell all of the people out there who think that this was the best thing, or her parents have every right. You are wrong. People such as Ashley have rights, even if they can't speak up, others have to. Disabled people are not some sort of "luggage" that you can fold up or detach parts from for your convenience. I really can not believe that there was not a physician, ethicist, or even administrators who absolutely refused.; 10:39 AM
Anonymous said...: I just want to first address the disabled people and the parents of disabled people. You people lack objectivity because of your situation and it is obvious in your comments. Uniformly, it seems like the one point that is being overlooked here is that this girl has absolutely no cognitive capacity. She will not feel dehumanized, slighted, robbed, or any of the feelings some of the aforementioned people have projected onto her. She will however be more comfortable. Do people get criticized when they have surgery to remove an appendix or tonsils to prevent the hardship and suffering of frequent infection? Having large breasts and experiencing menstrual cramps is not a picnic and these parents are not depriving their child of anything, but rather preventing their child from being deprived of being able to be transported around, taken on trips, and being included in family activities, rather that languishing in a bed. The parents are also preventing the pain and discomfort a normal adulthood would present for this girl, considering her particular situation.; 11:55 AM
Anonymous said...: The person who said "let the vegetable die" seems to be one of the few people who is living in reality. Bravo to you.; 12:05 PM
Mike Dorn said...: Thanks a lot anonymous [irony]. I'm all for civil discourse, but hate to see this space polluted by such apparent hatred towards children with severe disabilities. Yet it exists and apparently thrives on uninformed debate in public media outlets.; 12:32 PM
Anonymous said...: Mike, thank you for sharing your opinion and allowing mine to be heard as well. But acknowledging the state of a human being as being not more than that of a vegetable certainly has nothing to do with hatred. It is merely acknowledging the facts. And it is also a fact that this poor child would have died as a baby if it were not for the intervention of medical technology (misapplied or not, up to opinion). Perhaps you disagree with what I have to say, but my sentiment was hardly "uninformed". These cases, like Teri Schiavo, are just some proving ground for those who seek moral superiority in the fear of their mighty God sending them to hell. Look at the big picture, please. For the sake of humanity.; 1:36 PM
Anonymous said...: Anonymous previous said..."Do people get criticized when they have surgery to remove an appendix or tonsils to prevent the hardship and suffering of frequent infection? "

Just wanted to mention an inflamed appendix must be removed immediately to avoid high risk of bursting and death. Tonsils may have been frequently removed in the past (probably when most people bloggers here were children), but if you were a child today, most physicians are very reluctant to perform a tonsilectomy even if there are frequent infections. This is for two reasons, tonsils are a form of lymph tissue which may have beneficial immune properties and also there is weak or no evidence that removing tonsils improves the health of a child. Tonsils are more likely removed now in cases of stage 4 or 5 inflammation where the tonsil is so enlarged that it may block the airway and the patient is at high risk for apnea and death. Therefore in both cases there is a significant risk of mortality so these surgeries are rarely criticized.; 4:11 PM
Anonymous said...: Ashley's parents said it wasn't done for their convenience in one statement, yet they contradicted themselves when they stated that Ashley can now go to family functions/celebrations & vacations. It's right there in print...it was done for them!!! To destroy a healthy body based on her mental/physical handicap is disgusting!! Her parents & doctors should be considered evil people!!!; 4:40 PM
Mike Dorn said...: I find the use of the term "vegetable" to refer to Ashley, or any person for that matter, repugant. People are assuming that the politics of the Ashley treatment is the same as the circus that surrounded Terry Schiavo. Yet based on the facts presented by Ashley's own parents, I cannot see how one could equate this case with Terry Schiavo's. Ashley enjoys pleasures and pains and processes her environment. They look forward to bringing her to birthday parties and family reunions, for goodness sake! I agree with all of those who acknowledge that there are fundamental moral precepts at stake here, and do not agree with the solutions Ashley's parents arrived at. Like many who have posted to here, I do not wish to vilify the parents, but want to understand the strong emotions that this case seems to be eliciting against the disability community more generally.; 6:20 PM
Mike Dorn said...: Dear blog posters (whether I agree with you or not!)

You will want to check out “Paula Zahn Now” tonight. They will be featuring a discussion of the “Ashley Treatment,” including another family that supports Ashley’s parents.

Source: http://benandbenniewaddell.blogspot.com

Interested in your thoughts. I may not be able to blog mine until Sunday. MD

PS: Thanks for the suggestion to read the original medical journal article. Can someone email me a copy to read while I am on the road?; 6:29 PM
brutspet said...: Ashley’s parents state that some of the procedures that were conducted on their ‘pillow angel’ (she's not even considered a human child) are a first of their kind. I beg to differ. In Nazi Germany the ‘disabled’ were rounded up and groutesquely experimented on, most often sterilized, thrown into concentration camps…you know how the story ended for most. Most of OUR countries state ran institutions practiced sterilization for both men and women well into the fourties and fifties. This is not cutting edge technology.

I have worked side by side people who experience disabilities for over 10 years. I spend every day with 40 different, unique, wonderful people, who just happen to have been natually (YES NATURALLY!) born with a disability. 85% of these people do not use words to speak. 50% of them use wheelchairs. Each of these people weigh anywhere from 80 to 300 pounds. Guess what? It doesn't matter. By reading through Ashley’s family’s description of her, I spend my time with many people who most would say appear to have less cognition than Ashley's parents ‘deem’ her to have.

Ashley has been robbed. Ethics are a joke in her town. There are many, many other options for the ’struggles’ her family was trying to ‘avoid’. Later in life, breast reduction if she does grow large breasts. Birth control or the surgury later if she seems unable to handle the pain/discomfort of menses. It’s amazing how many 30+ disabled women I know who cannot speak words or use their bodies who are able to tell me or my staff monthly that they need a little relief. For lifting, let me tell you- there is a whole industry out there with wonderful technology to help anyone do just about anything. There are innumerable options. Respectful, selfless options.

Ashley’s disability, if anyone would care to do a bit of research, is actually an entire body/bone/growth stuntor. Ashley may very well have never grown to what her family’s ‘typical’ genetical map would have described. Look at the pictures of her as a young child. She probably would have always been small in stature. Ashley is tube fed also so weight can always been controlled in a healthy manner by this mean (i.e. she won’t ever been eating ding-dongs and snickers).

No one has ever stopped yet in history to give credit to people who experience disabilities. I keep reading over and over if your not a parent of a person with a SEVERE disability (define that one for me) that you cannot judge. I want to say if you do not KNOW someone with a SERVERE disability or better yet if you do not experience one yourself you cannot judge. The human mind is an amazing machine and when people have one they learn to use it even if it is not in the way we ‘typicals’ expect to see. “they” know, absorb, and process much more than you know.

And there IS support out there. I work for an agency that offers wonderful supports. From the day Ashley turned 6 months old, as an American citizen, she had rights to be cared for, taught and protected. Don’t like that? Think that’s a drain on society? That’s what America’s about. You don’t turn your back on those that need protection and added supports to gain similar skills all people born to this land are given. There are waiting lists for governmental assistance in every state I am sure, the system is not perfect, but at Ashley’s age she would definately be off the waiting list now and eligible for curtailed in home supports for her and her family at no fiscal cost to the family. And this is for the rest of her life. And if Ashley's parents can afford what I can imagine are extremely costly medical procedures why are they saying they cannot afford in home care for Ashley? Rubbish.

Where does it end? What Ashley went through was tramatizing, debilitating, humilating, disrespectful, and risky. This whole situation rings frightfully of Munchancen's (sp) syndrome. This atrocity scares the hell out of me. Over my dead body would I EVER let this dehumanization occur to anyone I care for.; 9:05 PM
Anonymous said...: This is a very difficult subject for many people. Although I agree with the problems, I do NOT agree with the solutions. Unfortunately, saying that the “Ashley Treatment” was the only workable solution is engaging in a false dilemma.

The Ashley story, like many other current news stories, is one part of a larger and disturbing picture of how the disabled are viewed:
http://qw88nb88.wordpress.com/2007/01/12/devils-and-angels/; 11:05 AM
Anonymous said...: Bless you and your family for accepting your son just the way he is.; 2:56 PM
Peter said...: It disturbs me that Ashley's own parents have passed sentence on her ability to live a full, natural life. Obviously Ashley's parents 'thought' they were doing the right thing, but they should have seen the flaws in their logic when their motives included making her easy to carry! Something similar happens to circumcised baby boys. It goes on daily in this country under a similar rationale to why Ashley's life was "improved" without her consent. Just as it disgusts me that her parents decided which aspects of Ashley's natural life she should have the opportunity to experience, it disgusts me that men's penis' are circumcised - a medically unnecessary procedure -with similar justifications.; 1:26 PM
Anonymous said...: Thank-you for speaking out! You have no idea what this means to me.

When I first heard about Ashley, I read the CNN article, and the posts made by people. Everyone sided with the parents. The few who didn't were attacked.

It broke my heart that people just didn't understand that it was a human rights issue. If they could call it a "medical choice" somehow that made it acceptable.

Whenever somebody would comment (on the CNN page) with, "When you are a caretaker then you can say something." --- My blood would boil, because cartakers would respond only to be attacked!

Tragic that some people in this world love to find any excuse to treat another person in such an unhumane manner.

Once I was naive enough to believe that the world can change. After I read those horrible comments on the CNN page, I cried. Any hope I had for a changing world died.

Reading your page brought tears of joy. Hope for me was again reborn!

You are spreading the word that this "treatment" is just a poor excuse for society to continue treating a person with a disability as a doll or a pet. I applaud you for speaking out against such archaic views.; 6:40 AM
Anonymous said...: Thanks for the nice post!; 12:03 PM
Anonymous said...: I am very happy that you decided to post about this issue.

I can't imagine why I've seen other bloggers support this hideous "treatment."; 7:17 PM
Anonymous said...: If I had a child in Ashley's condition I could honestly say I would consider doing the same thing. I have seen time and time again people with severe/profound disabilities sexualized beyond all reasons because they have the parts of adults, but the mind of children. I've also watched countless families struggle to keep their children in their home, but ultimately have to put them in group homes because they simply can't care for someone of that size. Props to Ashley's parents... I pray that God continue to bless them and their daughter.; 6:59 PM

Disability Studies, Temple U.

Friday, January 05, 2007

Sigh.

47 comments:

Blog Archive