Sunday, January 07, 2007

A mother and father’s betrayal

Update: See January 15 post.

Ok. Here I go. I am tired of the profound sadness that is filling my head 24/7.

When I first heard about the “Ashley Treatment”, I was appalled. I checked out the family’s website. I was more appalled.

I have been reading insightful, articulate reflections* by fellow bloggers. My family and I have talked on and on and on about the situation. But, still, I had remained a little detached (not much!) and didn’t want to write about the topic. My interview project and my blogging have been fun, up until now. But, tonight, I have changed my mind.

Ashley has cerebral palsy. I have cerebral palsy. But, most importantly, Ashley is human. I am human. Ashley is me. I am Ashley. And you are Ashley, too.

Ashley’s “parents” are afraid that their daughter would grow physically to be a young woman. I am a young man. I have a severe disability. I cannot sit up by myself, I cannot walk, I cannot go to the bathroom independently, I cannot prepare meals, I cannot use utensils very well. I cannot wipe my own butt. I drool. I weigh about 140 pounds, I am 5’9” tall. I am uncomfortable spending a lot of time in my wheelchair, I prefer to lay on the carpet. My mom can no longer lift me off the floor; my dad can barely lift me off the floor.

I have been disrespected and mistreated at times in my life. My parents have always gone to bat for me and now, with me. What strikes me tonight about the “Ashley Treatment” and has brought me to tears is that the very people in all of society whom this child should trust, have betrayed her. When you grow up so dependent, so vulnerable, you need someone to love you wholly and unconditionally. The rest of society may disrespect you and put you down and make you think less of yourself and make you think you are not a human being, but your parents?! Your parents?! I am my parents’ child, they know that I am a human being. Not an angel, not a pet. And, I learn from them that as a human, I have human dignity.

Ashley’s parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity. But the truth is, they have lost their dignity.




*The thoughtful, insightful reflections:
Blue/Kay Olsen: Ashley Treatment

Imfunnytoo: It begins with Ashley

Mary Johnson: Ashley’s treatment in the media

Penny Richards: Sigh

Dream Mom: Pillow talk, the debate over the Ashley treatment

Corey Silverberg: When disability gets in the way, stunt it.

Nufsaid: The Ashley Treatment

Wheelchair dancer: Human Rights

Ruth Harrigan: The Ashley Treatment

Updated-
Thirza Cuthand: I am not responsible for your discomfort

51 comments:

Dream Mom said...

Thank you for this nice post. My son is about the same height but weighs a little more than you. He too loves to lie on the carpet instead of sitting in his wheelchair. In his case, he loves this pop up tent with a sleeping bag for a floor that I have set up in the living room. He loves to watch t.v. there and often falls asleep there too. I have a hard time lifting him off the floor and we are getting to my limit.

I too think her parents failed her.

Good post!

Anonymous said...

Well - this is sure an incredible story in so many ways...

The fact is that parents are given tons of latitude and leeway in our country to make all kinds of decisions for their children. Some can be seen from the outside and require others to participate, other decisions are made more privately and don't need physicians to implement them.

The reality is that kids can be screwed up in about a million ways by parents who may mean well, or maybe are just plain wacko. While I do believe we need to stand up for those who cannot stand for themselves, literally or figuratively, the rights of parents are something that I, as a parent, value beyond measure.

There is a system in place, no matter how faulty, that should keep abuse from happening. It certainly isn't always successful. The medical procedures (or lack of, as in the case of Christian Scientists) have been debated for quite a while in the courts - and will continue to be.

Honestly, a part of me can understand Ashley's parent's concerns and fears - especially that she will grow to be a woman subject to the sexism and vulnerability that unfortunately accompanies our gender.

What is harder for me to understand is that there are medical people willing to play into those fears, instead of counseling the family and helping them deal with a situation that defies understanding by anyone not in it. That to me is the true failure here - perhaps less the parents, and more the professionals who should know better and do better...

Just my limited thoughts. Thanks for the post, David. Always thought-provoking - and sometimes ya just gotta go there, no matter - or because of - the pain.

Lee Prior

Connie said...

Your voice is important David. Thank you for sharing your thoughts with us.

Blue / Kay Olson said...

I'm glad you wrote this, David.

Ruth said...

Thanks for your post on this topic, David. All of our voices raised together matter a great deal - and this post shows what a strong voice you have.

David said...

Blue/Kay Olsen from the Gimp Parade shares her uneasiness with Ashley's parents lack of self-reflection on their monumental decision. She addresses the complex medical/parent relationship.

Dirty Butter said...

I have already expressed my views on this on Wheelie Catholic, but I would like to thank you for your strong personal stand on this strange situation.

imfunnytoo said...

David, this is just marvelous...great stuff.

Ben & Bennie said...

David -

I have been brought here by a lady named Connie. I have an entirely different perspective and opinion than yours. First off, I hope and pray my son will have the cognitive abilities and skills you obviously have. I do know of stories that give us parents of EXCEPTIONAL children hope just like yours. They are unfortunately very uncommon.

I am not advocating the treatment Ashley's parents chose as an across-the-board measure to be taken by every child who exhibits the symptoms of Ashley. Those parents made a decision when she was six years old.

I will also say that I have not read enough of your blog to know when and if you showed signs of intelligence at such an early age to determine how to treat your CP. I will guess that you showed an incredible determination and will at a young age to give your parents and caretakers hope in regards to your future.

I will make a guestimation and say that my son fits somewhere in between. I have been his cheerleader and "pusher" (for lack of a better word) since he was born. I could sense his determination and effort long before many others (including his Mom). I was told "there is nothing" to work with.

With that said I cannot agree with your assumption about Ashley's parents. How have they failed? How have they not been great care-givers of a beautiful child? By what they have done with a collective of ethical people who made an oath of doing what is best for the advancement of medicine be so wrong that they now are no longer deserving of being parents?

I'm going to type this the best I can but those parents have made the best choice that they can given the knowledge they know. You are a male so you have no idea what menstral periods do to a young woman. You also failed to mention that puberty begins for girls with seizure acitivity and known (or unknown) genetic disorders. Ashley was already showing signs of puberty at the age of six.

That situation is much different than yours or my son. My son has just gotten his first real wheelchair and there are chest constraints that could make him uncomfortable without breasts.

Everyone wants to paint this situation as a matter of convenience. Folks have said, including you, that Ashley's rights have been violated? How? We parents do the best we can in situations like your own. Well I'm willing to bet you were much different from the children you were initially placed with.

I don't know your parents. I'd surely like to meet them one day. But you are crucifying two loving people who are doing the best they possibly can for their child.

Ben & Bennie said...

Oh by the way, she does not have CP. Static Telepathelly (terrible spelling) It's much worse. You can look it up for yourselves. I'm guessing this is an ambush.

I did think more of Dream Mom's opinion. If you don't agree then you're wrong.

Connie said...

David, Hi...

I was able to catch the CNN program this evening. See, I TOLD you you have an important voice.

The problem with issues like this, just as in politics :) is that people can so often loose track of the fact that we all have rights to our opinions. When we get to feeling passionate, and rightly so, we often start hurling insults when in reality, if we were to meet at a holiday party we might think "where have you been all my life?"

This is a passionate issue. I think we need to take a lesson from Donald Trump and Rosie and take it easy on each other!

Ben & Bennie said...

It is quite evident that many of you have visited my blog to sway my opinion toward that of your writers here. Fine. I appreciate what you site is about and the efforts that you make toward disability rights. HOWEVER, I STRONGLY DISAGREE WITH YOUR CHARACTERIZATION IN THIS REGARD:

"Ashley’s parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity. But the truth is, they have lost their dignity."

Anyone of you who thinks this is true is not worthy of the defense of my son's rights. It is sanctimonious bullshit.

David said...

I appreciate the comments on this sensitive issue which opens wounds in me and I imagine in others, too. Perhaps we can agree to work for better support services for those of us with disabilities and our family caregivers.

David

Anonymous said...

Wow - having a blog sure opens yourself up for some abrasive, challenging, and strong words from others.

David, I really like that you are shifting the focus to what we can all agree on, regardless of how our "impassioned" positions on this topic may differ.

Hang in there, maintain your important voice, and remember the words of Dr. King: "We must forever conduct our struggle on the high plane of dignity and discipline" - regardless of how others may try to bait you or conduct themselves.

With love,
Lee

Anonymous said...

Your insight and articulate treatment of this is profound! The ethical issues woven through this issue are huge - you rightly say that we all are Ashley.
- Anne

The Random Yak said...

David:

Thank you for this post. With all the voices telling people what to think about Ashley and the Ashley Treatment, it means a great deal to have someone living with a disability who is willing to speak out in her defense. Too long, people with disabilities have had an insufficient voice in the public square, particularly on issues of disability and how to live with dignity. I hope your blog is a step away from that situation - in the right direction.

RobbKidd said...

David,

You are blessed for expressing your thoughts to the public and enlightening them. The whole world needs compassion and it is a shame that this treatment given to Ashley is bringing that about.

Thanks and I leave you with a quote from the social activist/humanitarian Helen Keller.

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."

Thanks
Namaste

amberglow said...

Thanks for this, David--i'm really shocked by what her parents did, and how they view her, and even more shocked that the ethics committee agreed to it. We're all people and deserve dignity and human rights--all of us.

Good luck with the project and everything!

A Ray said...

Cry "dignity" til the cows come home, but I'd rather be the doctor to keep her prepubescent than the one who has to abort a fetus after she's impregnated at age 25 or 30, when her parents are no longer capable of taking care of her and she's been institutionalized and raped by some two-bit scumbag (to put it nicely) who gets his rocks off assaulting people who can't defend themselves.

Ashley doesn't have cerebral palsy, she has static encephalopathy. That means she's never going to have a fully functioning mind - she's going to be 30 years old and still have the mind of a 3 month old infant. Where you will progress mentally in spite of your body, she will not.

Which brings us to the idea of dignity. Ever see an infant comport himself with dignity? Of course not - an infant will crap his diaper even as he's dumping whatever food he doesn't like all over himself, and he'll do it with a smile the entire time. Infants can't have dignity - it's not something bestowed upon people by genetics, or upbringing, or by popular vote. It comes from inside, in your own mind. Ashley will never have to worry about being a dignified adult because she can't comprehend the concept of dignity in the first place. And she'll never be able to - her condition is mentally stunting, while yours is essentially physically stunting in most ways.

For you to complain of Ashley's lost "dignity" is simply projecting your own "what if" scenario - "what if that was me" - onto her. But that's a straw man, because the "what if" would imply that she could think about herself abstractly in the first place.

The only people who so far seem to have tried to see things from Ashley's POV are the poor parents who are being villified by people like you. If you were an infant, would you care about dignity? Or would you simply care about feeling good and not hurting. Imagine an infant trying to comprehend the menstrual cycle for a second. All an infant would understand is she was uncomfortable and not happy some of the time. And I won't even suggest trying to comprehend being assaulted through the eyes of an infant.

This is Ashley's future if left to mature "naturally" - although if she had truly been left to mature naturally she'd have died a long time ago. Her parents can't take care of her forever, and I give them credit for realizing this and making the hard decision they had to make for her sake. They didn't betray her, they probably made the second half of her life a lot easier. And that's all an infant really wants - an easy, happy life.

And while I compliment you on what you've accomplished in your own life, your blog entry is just another of the countless people taking offense because they're projecting their own concepts of dignity onto someone who has no concept of dignity. Try thinking from Ashley's point of view instead of that of a disabled-person-advocate before you condemn the parents for something they couldn't do in the first place - take away Ashley's "dignity".

The Lyceum's Janitor said...

Sorry, but Ashley doesn't just have Cerebal Palsy "like you". She has a permanent brain impairment that means she will never walk, talk, or understand things like you do. She is in essence a permanent infant with no hope of ever becoming more. Her brain is incapable of regenerating. He parents are trying to give her the best life they can, and all the Monday-Morning quarterbacking on this case is what makes ME ill. You wouldn't want some anonomous blogger deciding what is best for you. Ashley's parents are doing their best, and to assume in any way that a parent is putting their needs before what is best for their child is something only people without children do. 99% of parents love their children more than life itself. Leave these people in peace and let them do what they think is best for their parents. I am certain that had they had a child capable of blogging and going to school like you they would never have considered this procedure.

TheMom said...

Thank you for your insight into this disgusting treatment. As you said, where is the UNCONDITIONAL LOVE that we are supposed to give to the people we love? I can't believe that people can start hacking away at someone's body legally. Does this mean that a parent can alter a perfectly healthy childs body as long as they come up with, what they think is, a "perfectly good" reason? Where does this end? It does sound like they treat her like a pet. A full grown disabled person can be taken into the family room for family time, outside for sunshine, to the mall for social stimulation, and many many more situations. Since when do we have the right to make them compact so its easier on the caregivers? Sick...I'm just sick. Sometimes I wish I didn't read about this kind of thing. At times I wish I were just ignorant of the filth that our society is turning into......all for the sake of our own convenience.

Anonymous said...

I don't generally blog as a rule, unless that is I feel somebody needs to hear what I have to say. It's painfully obvious that David has never actually tried to work ( or watch people work ) with those who are mentally/physically impaired, or he would have seen, like I have, that manipulating a 6'3" 200 lbs. "boy" into a bathroom when he doesn't want to go ( yet needs to in order to avoid defecating his pants ) is a daunting task at best. I can't blame the parents for keeping her small - I wouldn't EVER want my disabled child in a care facility, but I wouldn't want to wear my spine out at 45 taking care of a child either. Why must you project your own experience with disability onto a girl who will never be cognizant enough of your "contribution" to thank her? These parents love her so much that they don't want to pass the job of loving her and taking care of her off on somebody else, and they understand that in order to love their daughter in this way that they need to manipulate her body to do so. It's become clear to me that Ashley's parents are not fools - they understand that a balance must be struck between caring for their wonderful daughter and the rest of their lives as human beings. An analogous situation here would be cutting a child's hair so that she doesn't get lice or so that he can see where he's walking...so that these kids can have happier lives. Why then can't Ashley's parents manipulate her body ( like cutting her hair ) so that she has a happier life? Does this mean then that we can't cut our child's hair, that we are terrible people for doing that too? And please, don't use Ashley as an Everyman figure. Ashley is NOT Everyman the same way I am NOT Everyman, the same way David is NOT Everyman. The Everyman analogy is about as useful in this situation as Shylock's words from The Merchant of Venice - inflammatory, easily twisted, and not at all helpful to the discourse.

Anonymous said...

"themom" What a ignorant commment. Ashley is not a "disabled" person that can enjoy a stroll down the mall for social stimulation. A 3 month old mind cannot do such a thing.

Personally, I'm tired of liberal whiners thinking they are better than everyone else.

The word disabled gets used way too much. If you can make your own decisions and think for youself, then guess what, you're not disabled.

Ashley on the other hand can do not of these things, her I would considered disabled.

I can't even type I'm so fed up with this blog....why should I anyway, all of you are way too good to listen to a low life like me...

daniel said...

just a note: the argument

Ashley is human.
I am human.
-----------------
Ashley is me.

is not sound. just because you and ashley share a number of similar traits does not make you her. if this argument was sound, one could also make the case that you are george w. bush, or even hillary clinton:

Hillary Clinton is human.
I am human.
--------------
Hillary Clinton is me.

not too enticing, is it?

isabella mori said...

david says

"I appreciate the comments on this sensitive issue which opens wounds in me and I imagine in others, too. Perhaps we can agree to work for better support services for those of us with disabilities and our family caregivers."

amen to that.

this is a really complicated situation to know about, to think about, to write about, to imagine. david has his opinion, coming from his experience, other people have very different opinions because they have very different opinions.

but let's be honest - none of us knows what's going on in ashley's family. so let's just remember that EVERYTHING that anyone says here, unless they have a daughter with a very similar condition, really isn't founded on enough information.

other than the information of the wounds that david talks about.

(and, yes, rather than bashing heads in over something that we don't know enough about, why not work together to get more support for people with disabilities and those that assist them.)

Anonymous said...

I appreciate your thoughts, but what I don't appreciate are the personal attacks about you "just having CP" (talk about trying to take away someone's dignity). If people can't stick to the debate, they need to post their comments elsewhere.
The Ashley topic has stirred emotions in all of us. Many of us do not have physical or cognitive impairments- although after reading a few of the comments, I'm not so sure about the cognitive part- nor do we face the daily grind of caring for a dependent person. Therefore, we shouldn't weigh in so vehemently. This situation is extremely difficult, and it is impossible for me to comprehend how a parent could make that decision. I'm sure it was gut-wrenching for them, but they probably thought they were making the best decision. Perhaps they thought they could provide better care for Ashley if she were smaller. Maybe they thought if she was smaller, they could hold her closer, soothe her, comfort her- I don't know their rationale, but while some of us may not understand that, judging the family so harshly isn't going to change anything.

Anonymous said...

David, there are a few things to keep in mind...you are able to blog..You have a way to communicate, she does not...Ashley will never do that or anything close to it. So your situation and hers are not completely the same. In that respect it is not really fair to her parents to compare your situation with hers.
According to the story...she is in an "infant" state and will never grow older in her mind than she is right now....you are obviously not in an infant state in your mind.
Although some aspects of being disabled between you and Ashley may be similar..they are not exactly the same. Those things which are different...make all the difference! It is not fair to anyone to compare apples to oranges and say they are distinctly the same thing. I am happy for you that you can communicate and can think beyond the infant stage of life...be happy for Ashley that her parents are trying to take care of her!

Amy said...

David,
While you make many good points, perhaps the one thing you've forgotten to do is to put yourself in Ashley's parents' shoes. It seems to me that they, like all good parents, want to provide the best care for their daughter. They've come to the realization that they will be unable to do this if she grows to a normal adult size. Which do you think would be a worse outcome in this case: allowing nature to take its course to the point that her parents may feel the need to give up their care of Ashley to an institution that will be physically more able to care for her- or a surgical, "unnatural" intervention that will allow the people who love her the most to continue providing care for her?

Please don't take this to mean that I advocate parents treating any disabled child this way. In this particular case, Ashley is NOT just like you, or like the majority of disabled people. Having static encephalopathy means she will never have mental activity that exceeds that of an infant- which, essentially, is none. Were she able to think for herself, or even to have any conscious thought, even if she were unable to express it verbally, my opinion would be vastly different.

Anonymous said...

While I certainly don't envy your situation and feel blessed that I am lucky to not be disabled, I am sickened by your rantings. Who exactly do you think you are? Your disability is NOT an entitlement to place judgement upon others.

95% of the posters that agree with you are only agreeing out of PITY. They are too short-sighted to see that your particular situation, contrasted with Ashley's, is like night and day. Instead, they ignorantly assume that your ridiculous 'I am Ashley' statement is true simply because you both have severe disabilities.

Why don't you reveal your true motivation? It must be nice to have a link to your blog on CNN, right? Enjoy your fifteen minutes of fame but, seriously, quit with this betrayal nonsense. I mean, come on, to refer to her parents as "parents" (I'm referring to the quotation marks)? Are you actually advocating that they did what they did for any reason other than absolute love, caring and adoration of their daughter?

You may be disabled, but you're still a judgemental, self-righteous prick.

Ryn Tales said...

David,
Thank you for this post. My daughter has cp and is 4 I am I horrified by what was done to Ashley. I am just disgusted and think her parents did fail and failed in such a way that they are now promoting this horror for others. I am glad you posted even though it was tough. I posted too even though I thought I wouldn't. I am just horrified to think that other parents will now think this is an acceptable thing to do.

We all need to speak up about things when they are this bad!

Keep blogging!

And to the anonymous poster above - have the guts to reveal who you are if you are going to throw insults at someone just because they have a different point of view.

Anonymous said...

The arguments that procedures were done for her own good don't hold water. Read the parent's blog. (1) to prevent her from being molested. CHILDREN ARE OFTEN THE FIRST CHOICE OF MOLESTERS (2) to prevent breast cancer. BREAST TISSUE IS PRESENT FROM THE WAIST TO THE NECK so this is no guarantee. (3) hormones to stunt her growth are harmless. THERE ARE NO STUDIES TO SUPPORT THAT and lots of information to refute it including increased risk of cancer. (4) to make her more comfortable because breasts are heavy, cumbersome, get in the way. THE SILLIEST OF ALL CONTENTIONS. Breasts are not solid. Straps can be placed around them. Whether lying on our sides, backs and sometimes our stomachs, most women are unaware of their breasts.

These procedures were unnecessary and cruel. And the most odd part of this, the parents refer to her as "pillow angel." That sounds like a doll. Not a human.

Thank you David for your perspective.

Lissa said...

'Breasts are not solid. Straps can be placed around them. Whether lying on our sides, backs and sometimes our stomachs, most women are unaware of their breasts.'

LMBO you must NOT have breasts by the way you talk. Let me tell you as a woman who has breasts. I roll over on my stomach my breasts gets pinched. It hurts and it hurts bad. Straps? Well let me tell you I have to watch out what kind of bag I wear over my shoulder cause it irritates my breasts. Just because you don't have sensitive breasts doesn't mean everyone is the same. Don't talk for woman-kind you sound like an idiot

Anonymous said...

As a Certified Developmental Disabilities Nurse I have followed the Ashley Case with great interest.

One of the things we must realize is that, unlike David, Ashley is and always will be Profoundly Mentally Retarded. No one has ever been cured of this disease.Unless God provides a Miracle,Ashley will be Profoundly Mentally Retarded for the rest of her life.

Families and Facilities must provide Loving Care, Active Treatment, IPP's, ISP's, IEP's, Normalization, Respect, Dignity, Physical Therapy, Privacy, Age Appropriate Interaction, and Safety to every single individual living with a developmental disability who has been entrusted to their care. For those who's Mental Abilities are even a shred above Ashley's we must also strive to enable and support Independent Living.

But at the end of the day all Ashley will ask is, Did you keep me healthy, did you keep me happy, did you prevent my pain, did you stop my pain when it started, and did you make me smile.

I would never in a million years suggest the Ashley Treatment for one of the individuals in my care. I would without hesitation, have it done on my own child.

David, I dont know how helpful your Service Provider Agency is, but let say this: Start to think about Independent Living Options. Here is California our Regional Center can enable you to live in your own apartment, with as much or as little care services and you chose. Dont wait until Dad cant lift you anymore.

Cindy said...

I loved what you said, and how eloquently you said it. I've been doing a lot of crying, too,since Ashley's story hit the news. It breaks my heart that we are expected to conform to everyone else's notion of humanity. Like one of your commenters said, what did happen with the whole unconditional love thing?

And I just have to say how surprised I am at the level of vitrol expressed by some of those leaving comments. There are a lot of folks whose parents didn't seem to have raised them right, and many of those folks are named 'Anonymous'. There are so many disabilities I don't have- and I am so grateful that rudeness is something I'm not usually afflicted with.

Anonymous said...

Per 'Ryn Tales' request:

My name is Ryan Wells. Look me up in Herndon, Virgina. While you're at it, go fuck yourself.

Like I said, 95% of the supporters here do so out of pity. Whether it's ignorant assumptions or the fact that 'Ryn Tales' thinks she holds some level of solidarity because of her child's disability, it's still judgmental and short-sighted.

Leave these parents alone and let them handle their child the way they see fit. If you don't agree with the 'Ashley Treatment,' then just don't do it to your child. Stop twisting the story to fit your agenda and stop ignoring the facts in favor of propaganda from big-mouthed disabled people.

Do you think this course of action wasn't well researched? Do you think her parents just woke up one morning and said "I think we'll cut out our daughter's uterus tomorrow so she doesn't get raped and become pregnant later in her life." Get real, people. This wasn't a decision made overnight and it wasn't made absent of diverse and expert medical advice.

If you have a child with a disability, shut your mouth and take care of your child. Stop being such fucking instigators.

And David, I reiterate: enjoy your fifteen minutes of fame. And fuck you for what you're started. Like I said above, I don't envy your disability. But, since you seem to feel that you can express views just like everyone else, you should expect to get your share of disagreeing perspectives just like everyone else.

And Ryn Tales, just to reiterate: go fuck yourself. It's not your child and it's not your business. The insults that I'm 'throwing' are quite warranted. And get off of this 'identify yourself' thing; what do you think the point of the Internet is?

Femi said...

Dont wait until Dad cant lift you anymore

what an incredibly arrogant condesending thing to say. All these commentors who are sooo incredibly thoughtful and interested in david's caretakers--in their backs, in their knees, in their energy reserves--maybe, just maybe, you should shif some of that concern and care to the bodies and souls of the human beings being taken care of.

You might begin to imagine technologies and social justice programs that would allow caretakers to take care of the people they love, rather than perform unnecessary surgeries for no damn reason. I mean really, is this as capable as able-bodied people's intelligence is? You can't even imagine a way to get social justice programs that center disability funded? You can't even imagine technology that could help to make sitting in a wheel chair while having breast more comfortable? You can't even imagine what a world that imbraced disability might look like? Or is it just that it's *easier* to cut up kids than it is to form movements and demand change?

David, I came here via Blue. All I can say is that I am very glad you are blogging. Thank you so much.

brownfemipower

Anonymous said...

Hi Ryan Wells – and a hearty ‘fuck you’ to you, too, I don’t need to have children to determine child abuse is wrong, nor do I need to live in Africa and face discrimination for having an intact clitoris to determine female circumcision is wrong. There’s no tactful way for me to put this, so I’ll be blunt: the argument one needs to be a parent of a child like Ashley to judge whether there’s something wrong with cutting her tits off is stupid.

For anyone with half a brain, it’s obviously wrong to perform all manner of unnecessary surgery on her “just in case” she gets breast cancer, or just in case she gets appendicitis (because they removed her appendix, too), or just in case she encounters a rapist. (I like how nobody on her parents’ side has asked why our system sucks so bad that institutionalized clients HAVE to worry about roving rapists.)

I’m surprised her parents didn’t pull all her teeth; since she takes nourishment through a g-tube, it’s not like she needs them. I mean, she might get cavities some day.

For all of you too chicken-shit to judge these people, because you wouldn’t want to be them, you’d best hope no one feels that lily-livered when it comes time to defend your rights against erosion. It doesn’t matter whether you’ve been in their shoes or not, just like it doesn’t matter if you’ve sat on the same bench as a burned-out judge who believes criminal defendants should be stripped of their right to legal counsel.

Some of the less quick-witted among you may ask what criminal courts and female circumcision have to do with the “Ashley Treatment.” And before you try my patience by asking such a silly question, I’ll spell it out for you: these are all circumstances in which the rights of powerless individuals are being violated. With every other situation I mentioned, almost no one would dare defend the oppressor; but because this one involves a disabled girl, all the bigots start bleeding from the woodwork.

Human rights needn’t be earned, nor are they subject to a test of intellectual functioning. And dignity – “The quality or state of being worthy of esteem or respect” according to the American Heritage Dictionary - is a bounty to be extended to every member of the human family. The strong can prove their own dignity best by sharing that gift with the weak.

Cutting a girl up and stunting her growth so she can play the Neverland Princess ‘til she dies is not a way of sharing dignity. It’s a violation of her must fundamental right to bodily integrity.

If you can’t understand that, Ryan, you have no business in this fuckin' conversation.

Anonymous said...

To the last commenter:

That's an interesting and convenient spin you've put on the whole argument. Especially interesting is the notion that this treatment amounts to child abuse. You also conveniently left out the primary motivation for this treatment: the COMFORT and WELLBEING of Ashley. The other reasons you're mentioning are secondary reasonings. Again, nice spin.

If that's the case, why aren't the authorities intervening and putting charges together?

See, what's interesting about this discussion is that you have two distinct groups: the self-righteous blabbermouths that are condemning people despite not even knowing all of the facts. Then, you have people like me that are neither condoning nor condemning the treatment, but rather encouraging people to simply let these parents handle their problems themselves.

The difference? Simple - you're insulting me because you actually believe you're right. I'm insulting you because you're a big mouthed idiot. Your opinion is just that - an opinion. I, on the other hand, am speaking of facts. You are all fucking idiots. Pretty simple.

yanub said...

Chronic encephalopathy is not something far worse than what David has. When one bothers to actually read up on an unfamiliar term, one learns all sorts of things, such as that static encephalopathy is a synonym for cerebral palsy.

Anonymous said...

Lissa - I assume that the excruciating pain of your breasts is just a memory. You've certainly had them removed by now.

And why not remove men's testicles. Can't tell you how men grimmace, groan and occasionally fall to the ground due the pain, apparently, associated with bumping or moving these ultra sensitive organs. And of course the same argument that boys would become sexualized so it would be only sensible to cut off their testicles to prevent that.

But anyway, you must be more comfortable now. You certainly wouldn't be advocating for someone else's breasts to be removed while maintaining your own. And I speak for more of womanhood than you do. I'm sure of that.

And and additional FUCK YOU to the most ignorant fool on this blog - Ryan Wells.

Anonymous said...

My, aren’t you the self-righteous prick Mr. Wells (re: 10:48 AM). You didn’t post on this blog from a position of neutrality, as you claim; but from a position of paternalistic bigotry. Your modus operendi: ‘I’ll claim to be the only logical person here – the only one in possession of the facts, and I’ll lob insults at anyone who dares treat me below my station.’

Fact: the parents put themselves in the spot light, and are advocating that the involvement of ethics boards be limited in future cases – some of which have a far better prognosis than Ashley.

Fact: Parents aren’t permitted by law to do whatever they damn well please to minor children – even if they claim to be inflicting damage out of love.

Fact: If parents had done this to an able-bodied child, they’d be facing criminal charges and common outrage. NO ONE would be arguing that the future threat of breast cancer or rape is sufficient justification to do these surgeries – so cut the crap.

Disabled people are pissed about this because the whole pile of shit that is the “Ashley Treatment” is a violation of someone’s human rights – but few people recognize it as such because few people seem to believe Ashley is human enough to ‘deserve’ human rights.

You’re either a common troll, Mr. Wells, or a complete moron – and not because you agree with the parents. You’re a moron because, despite your whiney claims to be the victim of persecution here, you have demonstrated a child-like unwillingness to look at both sides of the argument. Your claim of neutrality is as big a sham as your “fact-based” argument that the parental intent to help Ashley makes their actions above question and reproach.

Whether troll or moron, you are a garden variety bigot; but instead of picking on race or sexual orientation, you’ve decided to aim your idiocy where you’ll get the most public support for it.

Ashley’s parents put themselves in the spotlight. They opened themselves to criticism. No one crashed through their front door to violate their privacy ‘merely’ because they consented to this surgery; they stuck their necks out. They’re advocating this for other children. They’re positioning themselves as being on the side of right.

They’re getting what they deserve for their arrogance. And so are you.

DiversityNZ said...

I think it's interesting that as technology continues to evolve in leaps and bounds (Apple having just reinvented the phone is a case in point), when it comes to moral and ethical dilemmas such as the Ashley Treatment, we continue to dissolve into ludite-like attacks on each other as we struggle to defend one of two polar-opposite positions - right or wrong. I think the situation of Ashley and her parents decision is far too complex to be right or wrong - it simply is, and, events having taken the course that they have, the consequences will play out, just as different outcomes would have eventuated had the family acted otherwise. Ashley's life will have negative and positive attributes now, just as she would have encountered positive and negative experiences had the Treatment not been carried out. What I think is sad and concerning is the lack of choice available to the family. "We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers," her Mom and Dad say in their blog. That, in 2007, is the most telling statement of all. That's what we should be arguing about. Would the iPhone have been invented if Apple had to say, ""We tried hard and found it impossible to find qualified, trustworthy, and affordable technology partners"?

Anonymous said...

"They’re getting what they deserve for their arrogance. And so are you."

WOW. What exactly is it that I'm 'getting'? Do you think I'm losing sleep over the fact that you are calling me a bigot? Or that people are using the word 'fuck' in response to something I've written on the Internet? It's funny that you call me the moron - in reality, you are. You're passionately involving yourself in something that I've simply found entertaining. Head on over to the 'Ryn Tales' blog as well; you'll see what I mean. I don't really care what you have to say.

I'm sorry - I don't recall any whiney claims of persecution. I also don't recall claiming myself to be the only logical person here or to even claim agreement with the parents.

In fact, if you'll be so kind as to reread my original post, you'll find that it's primary intention was to tell this David character this his disability doesn't grant him the right to be a blabber mouthed, judgemental asshole. DISABILITY OR NOT, to say that Ashley was betrayed by her parents is not his right. Disagree with the treament if you want. But don't try to characterize the parents as demons because you don't agree. It's really none of your business to begin with.

Like I've been saying, you're the ones with the agenda (I'm speaking primarily of the morons that actually protested regarding the 'Ashley Treatment.' Talk about hypocrisy - you don't want people to be sheep and follow this seemingly evil ideology. Instead, be sheep and follow our ideology, right?).

Anonymous said...

1. As I recall, you were the first to start using the term, “fuck.” Against reciprocity?

2. You ARE a bigot, and not because you agree with the Ashley Treatment. You’ve identified yourself as a bigot by the cavalier attitude you demonstrate towards protecting human rights for those with disabilities.

3. Your bigotry also comes out in the claim David is using his disability to shield himself from criticism: “David character this his disability doesn't grant him the right to be a blabber mouthed, judgemental asshole. DISABILITY OR NOT, to say that Ashley was betrayed by her parents is not his right.”

Umm, he gets the right to express his opinions not from his status as a disabled person, but from the same place you get the right to puke your bile all over this website: The First Amendment or the Charter of Rights and Freedoms (depending on where he lives).

Repeat after me: “People with disabilities have the same legal and human rights as everyone else. People with disabilities have the same legal and human rights as everyone else. People with dis…” Say that about fifty times over and maybe it’ll start sinking in.

4. You haven’t made a single attempt to understand our point of view, and yet you have the gall to go on about “our agenda.” If we have an agenda, I seriously doubt you can articulate it.

5. It is our business what happened to Ashley because her parents have gone out of their way to make it our business. Again, and for the last time, they put themselves in the spotlight. They weren’t dragged there by an angry crowd with torches and pitchforks.

6. If you were really as disinterested I our opinions as you claim, you wouldn’t be angered by our responses at all. In fact, you wouldn’t have posted here in the first place. You think you’re a shining beacon of reason in some primeval jungle filled with sub-humans who won’t accept your gift of fire; and it BUGS you…

…or I could just accept your claim that this “complex decision” the parents have made, and response to it, is all an amusement for you.

In that case, you’re either a bigot or merely a callous asshole. Choose whichever description puts you in a better light.

andrea said...

Hi David.
This is obviously a very difficult subject for many people. I feel conflicted too because I agree with the problems, but not with the solutions. Unfortunately, saying that the “Ashley Treatment” was the only workable solution is engaging in a false dilemma.

The problem is not that disabled people exist, but rather that there are not suitable social support networks for disabled people and their family members.

Furthermore, it does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights.

It also does a great disservice to those who view themselves as nondisabled: it makes a person glad to be normal, and content to be average. It perpetuates the divisions and reinforces the dualities. With such positions, we can never create inclusivity.

http://qw88nb88.wordpress.com/2007/01/12/devils-and-angels/

DD Nurse said...

In Response to Femi said...
Dont wait until Dad cant lift you

Ms Femi

You are mistaking frankness for arrogance. David has already said it.......Mom can no longer lift him and Dad is heading there.

Weather its enabling the widest possibility of Age Appropriate Independent Living or preparing for a life of Absolute Medical and Developmental Dependency, the bottom line is not the care takers well being, but the well being of the individual who needs services.

David could feasibly trick out his own home or his parents home with the latest lift and assist technology, determine his own level of attendant care, and enjoy a life filled with his choices. If he is still being lifted up and down by dad, one only has to assume that planning is a need.Dad can not lift him forever.

In our circles, we see hundreds of individuals with conditions identical to both David and Ashley. Nine times out of ten we get them when Mom and Dad can no longer cope physically or mentally with the needs of their dependent adult son or daughter. This is usually later in the individuals life and the very late in the parents life. The transition almost always occurs during Challenging Life Stages including incapacitation or death of a parent care taker.

The "Ashleys" make the transition to Out of Home Care surprisingly well. It's the "Davids" who experience depression, behavioral challenges, and health issues that decrease the quality of life they have known.

I do not know David's unique circumstances, but Ashley's have been shared in the spotlight. Embraced or Abhored, Ashleys parents are planning for a realistic future.

Sue said...

David, I agree with you. I have a nephew who is now 22 years old, with severe cerebral palsy. He too is like you in many ways, can't walk, talk, sit up, use the toilet, feed himself or dress himself. Like "Ashley", as a child (not sure what age) he too was diagnosed as having the intellect of an infant, and his parents were told he would probably always remain this way. But something happened....he got older and his intellect changed! He also grew taller, went thru puberty, etc.

I honestly feel that by depriving "Ashley" (if that is indeed her name) of the chance to go thru puberty, they are hurting not just her but also themselves - nobody but God truly knows if she will always be this way intellectually - my nephew is proof of that. Therefore, IMO a great disservice has been done and I hope the parents eventually realize this.

And to all the others on here bashing David and defending "Ashley's" parents, as a family member who has not only assisted in caring for my nephew but also my grandparents which includes lifting them, putting them to bed and helping them up, feeding them & bathing them too as well as wiping their behinds and changing AND washing diapers and feces-stained walls & furniture...we DO know what we're talking about. What a concept!

Sue said...

Just wanted to add something to my post. My nephew's progress began before puberty, and continued and improved DURING it. His intellect is now that of an eight to twelve year old. Just goes to show you can never say never.

Julia said...

David, I do not agree with you. I may not have the same credibility as I have never experienced life with such impairments, but what bothers me the most is the idea that you feel that you are entitled to all the care that you have received. For example, I confidently say that I am relatively a good kid; I go to school, get good grades, wash dishes and wipe my own butt. But at the same time, I cannot confidently say that I KNOW there were never times that my parents regretted having me, because honestly, I would not want to have to raise myself. And this is not because I doubt my parents' love for me; perhaps it is because I am young and selfish and at this point in life I lack the capacity for having children. But do you have this capacity? Do you claim to know what makes a parent? And if I could return to my previous little-kid behavior, I think that I would probably want to do something to make my parents' lives easier, because in my young and selfish state, I honestly don't know why exactly they put up with me. But you would not do this? Would you be willing to relinquish your size and weight - which you say expresses your dignity and makes you human - in order to make your parents' life easier? Because despite what they tell you, you must have the logical capacity to conclude that what they do is not easy. And to appreciate it?

I do not think that you are entitled to the care you received; I think you got lucky and you are taking it for granted. Because your dignity comes with a bigger price than for most people, and your parents are paying it. And for some reason your dignity is manifested through your height and weight.

I realize your position from Ashley's point of view, and I do not know if I would want the same done to me. On the other hand, I am a girl and I know what they are talking about. And, although you can decide for yourself your course of action, I do not think you have the moral pedestal to condemn these people, because they did act in the best interest of their child. However, I think you are calously taking your parents' efforts for granted.

Xuxan said...

I am a parent of a child who was not that much different from Ashley for a very long time. When he was born with Down syndrome he was addicted to cocaine and when he came into my life at 4 months he was dying because developmentally he was sliding further and further backward.

At a year of age he was assessed to be like a 6 month old. I was told he would never walk, talk, be potty trained, be independent in any way.

The next few years he developed very very slowly. I can see that very easily I might have been offered Ashley's treatment. Had I known that at the 23 hw would weigh 200 pounds I might have considered it.

Thankfully I had a good support system that gave me the opportunity to dream with and for my child. So I worked hard to make changes that would make his life better. It is.

Around 6 he took an amazing developmental leap. A year after Ashley's parents began her hromone treatment.

Ashley has been put in park. She is not going to change and grow.

My son at 23 is nothing like the person I was told he would be when he was 5. He take cares of himself in every way but paying bills. He is significantly cognitively impaired. He is still changing and maturing.

It is hard to be a parent of a child with a disability and see them suffer. (It is hard to see any child suffer.) But for some reason when it is kids without disabilities we figure it is part of the growing up process and we stand back ready to catch them when then fall, but still allowing them to fall - even if we cushion the fall.

But with our kids with disabilities we wrap them up in cocoons believing we are doing the best we can to protect them. Ashley has been wrapped as tight as she can be. Is Ashley even there anymore? Welcome to a Brave New World.

Anonymous said...

David:
I too have a disability. When I read the CNN article on "The Ashley Treatment" I cried!

How could parent's do that to their own child?

All my life I've lived with my disability. When I was a child I heard this comment, "It's too bad she will never have children."

Now that I know that is not true!

Maybe that false comment I heard as a child makes me a different sort of person than many of these people who think Ashley's parent's made "the right choice"?

For I could never ---- NEVER do to my child ---- what Ashley's parents did to her! Not ever.

Her parent's spayed her. Like people do to cats. To dogs! But she is a human; not an animal!

That so-called "treatment" goes way beyond inhumane. Way beyond all decency.

Lastly, thank-you! Thank-you for speaking out! Thank-you for speaking up!

Thank-you for these final words, "Ashley’s parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity. But the truth is, they have lost their dignity." --- You could not have said it better!