Friday, January 12, 2007

Ashley Treatment continued ...

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 contributing medical student who suggested read the original medical journal article on the procedure. I am tracking it down, but in the meantime you may to read the views of the author Dr. Douglas Diekema, recently interviewed by CNN. He headed the ethics panel that evaluated the parents' request back in 2004.

49 comments:

Connie said...

Hi Penny,

In my recent post "Down and Dirty on CNN" I wrote that when we start slinging mud around, in my opinion, that's when the dignity and purpose behind the *argument* is lost.

Getting "down and dirty" as Bennie expressed his willingness to do is, well, just plain dirty.

Connie said...

Steve composed a response as well. It's called "TV Land", in case you're interested.

Ivey Elizabeth Sirmans said...

This case is a true tribute to parents of profoundly mentally retarded children. No one can ever understand decisions that are thrown in the paths of parents with these children. My husband and I are some of these parents. The choices are unimaginable. Never judge these parents unless you live in their home permanently.

Ben & Bennie said...

Connie,
You obviously have made your opinion known. The mud-slinging began when folks on "your side" - the people opposed to The Ashley Treatment - called Ashley's family barbarians, mutilators, lazy, unfit to be parents. When you tell it like it is then it's not "mud-slinging."

Add the fact that the media and people like you have launched a massive onslaught of misinformation about The Ashley Treatment through blogs, discussion forums, and news services then I say YOU'RE the ones playing dirty.

When all this started I honestly wanted people to know all the facts about this story. As I told the producers of Paula's show I wanted healthy discussion to raise awareness about the plight we exceptional parents face. I even linked to Dream Mom's blog and her opinion which falls on the opposite side of mine. She did not reciprocate. That told me everything I needed to know about her opinion.

You along with several others of the same opinion then came to my blog and I will admit somewhat kindly pointed me in the direction of this site, most of which is anti-treatment. I do want to add that it was a nice touch to talk about my artwork and how you were interested in a possible purchase. Little did I know at the time.

When I read the response by David where he used the term "sacrosanct" (you might want to look up it's meaning) in description of the autonomy (ah, another big word) of a disabled persons body, that's when I used the phrases "Nazi" and "uneducated."

As the wonderful blog "Special & Needy" has said so well, there is no black & white, right or wrong here. There are just many shades of gray. One of my brothers is a lawyer and I don't particularly like that profession. For other parents of special needs kids to debase Ashley's parents is akin to me calling my brother a criminal. First it's unjustified but more importantly I'm alienating my own family member from someone he loves and needs.

For people living with a disability, unless you had some pretty crappy parents, for YOU to chastise Ashley's folks is biting the hand that feeds. You are showing an ungrateful and selfish attitude to those of us who have suffered with you, for you, and in some case moreso than you ever have.

Read Ivey's statement again. That is the bottom line. So let me ask you, Connie; who has played dirty?

Penny L. Richards said...

Sorry, Ivey's mom, but "Never judge these parents unless you live in their home permanently" just doesn't work as a bottom line for policy. In a community, there are basic standards of decency that have to override parents' decisions when a child's welfare is at stake. We don't let our neighbors hurt, neglect, or endanger their children, even if they say it's all about love and they believe it's for the best. We make laws to prevent it. And a disabled child has just as much right to that community attention and protection as any other.

Of course, I do live in MY home. As I've said, my family life probably has a lot in common with the story at hand, and yet, I still don't support the approach they're taking. A child's growing body is *not* the problem.

Ben&Bennie, if you have a problem with Connie, you know where her blog is; and if you don't want to visit there, you have your own blog as an alternative. I don't see why you're playing this quarrel out in our comments section.

Bennie said...

Ummm...excuse me Penny? I responded to a post ABOUT ME trying to slander me here in your forum. I would ask why you would chastise me for defending myself here and choose not to lecture Connie for trying to smear my crediblity?

Do you not see why I've used the term "Nazi" in description of some of the people who are against The Ashley Treatment? If we disagree with your opinion then we're wrong no matter how educated we are about the topic. And if should express our opinion here we're told to take it elsewhere.

And I would have to say that your explanation to Ivey is incomplete. No one has discussed the cleanliness issue once girls like Ashley start their periods. No one has discussed at length how Ashley was already showing signs of puberty at the age of 6. Why have folks like you not condemned those on your side of the issue for using terms like mutilation, monsters, undeserving of being parents?

I will say that you are one of the few disagreeing with Ashley's parents that at least listened to my opinion. for that I'm grateful.

Penny L. Richards said...

About "the cleanliness issue": There are many, many adult women with severe disabilities who menstruate. We'll never know, now, if this child would have become one of them. But if she's already using diapers/incontinence products, where is the additional mess? I realize that, in some cultures, there's a taboo against menstrual blood, but that's a social anxiety, not a medical issue. And addressing a social anxiety with major surgery makes no sense to me.

Please stop using heated and inaccurate epithets like "Nazi" on our blog. This is not the tone we have set on DS,TU, and I ask that you respect that. You have a blog; you can set the tone there as you please.

Ben & Bennie said...

You did not address the entire scope of questions. And here once again you make it clear that I am not welcome. I do get the message.

I stand by my characterizations, Penny but I will abide by your request. Interestingly how you allow anonymous posters to characterize our children as "vegetables", "turnips", etc. - terms I find far more repulsive than what I've used - in response to your own post about the issue. Of those 41 current responses I am sickened by many of the opinions that straddle both sides of the fence. But I'm actually impressed that you leave them up.

I actually returned to say I appreciate Mike's willingness to draw attention to my opinion on the issue. I was confused by your monitoring of his post and mistakenly thought it was yours.

I do hope you will visit us occasionally at our blog. I promise I am not the "angry man" some have portrayed me to be so always feel welcome. I am much better at direct discourse and I honestly do think both sides need to take a break and do more listening for the time being (INCLUDING ME).

The bottom line in all of this is that we parents of exceptional kids are missing a golden opportunity to tell about our struggles, sufferings, and hardships but more importantly the joys, blessings, and rewards we gain from raising our wonderfully special children.

You know where to find my e-mail, Penny. I do think you are accomplishing good things here. I read through some of the archives see so much potential for progress so I wish y'all the best (couldn't resist adding a little southern dialect).

Tom said...

Out of curiosity, what benefit would the child derive from being tall, having breasts, and menstruating?

Seriously.

Just give me a single benefit and I'll agree with you. Don't talk to me about how we must allow nature to do what nature will do (last I checked, pierced ears and tattoos were both man-made mutilations); just tell me how it would benefit someone with the mind of a three-month-old infant.

Penny L. Richards said...

Not having to go through major surgery and the attendant pain and serious risks (all surgery carries risk) seems like a pretty obvious benefit to me.

Anonymous said...

In addition, high dose estrogen therapy is not without its risks - blood clots, stroke, heart attack to name a few.

Anonymous said...

I'm also going to ask what Ben or Bennie has asked. Why are you so against his passion about the controversy? I really want to know why you have made this man a villian when he is expressing his valid opinion about the issue? I live in his town and I'm not sure I agree on upon everything he says but he justifiably has asked for an opinion and you have not really answered it. We only had a small mention of this in our local paper. I find that part very sad. I am so sorry I missed all of the dialogue on television. I don't own one.

Tom said...

Not having the surgery? Wouldn't that also be a benefit of not getting your infant daughter's ears pierced or circumcising your infant son? After all, they might be hemophiliacs. In Ashley's case, it seems to me that the parents have done an admirable job of explaining how the treatments and surgery would benefit her down the road, taking the risks of surgery under advisement. Turning the question around, how do pierced ears benefit a 6-month-old girl (or a 30-year-old girl, for that matter).

I have no dog in this fight. It just seems to me that those folks who are calling Ashley's parents some sort of monsters are doing so based on some fuzzy psychological/religious grounds without taking into consideration that "playing God" might actually be good for the kid or improve her quality of life. If a child is born with a cleft lift, is it wrong to correct it surgically (when the only true benefit is cosmetic)?

Penny L. Richards said...

Tom, you're seriously comparing a hysterectomy to earpiercing and tattooing? This child had healthy organs and tissue removed. Anesthesia, incisions, and IVs are involved in a major surgery. All carry significant pain and risk. (But to be honest, I personally wouldn't pierce a child's ear or get them a tattoo either, especially if they weren't party to the decision.)

If you're interested in a very detailed and thoughtful consideration of "benefit" in this case, I'll refer you to DreamMom's latest:

http://dreammom.blogspot.com/2007/01/ashley-treatment-final-thoughts.html

BTW, the cleft-lip repair comparison doesn't really work either, because it's very rarely 'just cosmetic'--there are known speech, feeding, breathing, and oral health considerations brought to that decision.

Tom said...

Of course I'm not comparing the surgeries, Penny. I'm comparing the thought processes. It's an unnecessary surgery/mutilation for which the risk is considered acceptable compared to the perceived benefits. Even with the cleft lip - sure, there are potential "speech, feeding, breathing, and oral health" problems with that particular condition; but it seems as if DreamMom's answer would be "buy some equipment that addresses those problems and hire trained professionals if necessary, but for heaven's sake don't use corrective surgery to address the issues."

I read the article that you mentioned, so I'll speak to that. This is not any type of attack on DreamMom. I just have problems with her problems....the most important of which (if you base your argument strictly on number of times it was mentioned) is that Ashley's parents have opted to stunt her growth.

So I've got to ask again (we'll assume I've asked before - I don't reread my own comments), "So what?" There are a lot of short people in the world. Some because of genetics, some because of malnutrition, some because Mama was doing crack when she was pregnant. Is being tall something that's super-important and gives one (to use DreamMom's words) "human dignity?"

Is having breasts - large or small - something that is going to make a profoundly retarded little girl (I use the time in the chronological sense) feel more dignified?

Will having menses improve the quality of this little girl's life? Will a hysterectomy leave her to ponder and pine for the joys of motherhood that she will now never be able to experience?

I think not.

Yes, there are risks associated with surgery. There are risks associated with the 6 pills that "Dear Son" gets every day (forgive me if I got the number wrong). There are risks associated with a tonsilectomy. There are risks associated with a trache, with feeding tubes, and with hacking off a gangrenous limb in order to better fit it with a prosthesis.

There are HUGE risks associated with separating conjoined twins, but I don't hear anyone questioning the ethics of doctors who perform those surgeries or the motives of the parents of those twins who agonize over the decision, realizing that they could very well lose either or both of their children.

I've enjoyed reading everyone's comments and I'll stop bothering you all now. I just wish folks on both sides would realize that very few things in life are definitely right or definitely wrong. Ashley's parents did what they thought was best. DreamMom has done what she thinks is best. Bennie has done what he thinks is best.

Let it go.

Penny L. Richards said...

Tom I don't believe you'll find the phrase or the meaning "for heaven's sake don't use corrective surgery" in my post, nor in DreamMom's post. You're fighting a strawman there. If someone else has said that, take it up with them, at their blog.

I've seen my 11-year-old son through more surgeries than birthdays, so I will claim some significant experience with the "thought processes" in planning a surgery for a severely disabled child. There are lines I wouldn't cross, and lines I don't think any parent should feel free to cross unquestioned. "Why not?" simply cannot be a good justification for surgery on a medically complicated child. Or any child.

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Arlene Wilson said...

An online disability community (MichiganFreedomLIstserv) has
begun to organize a response to the untested, unethical, unproven,
unnecessary medical procedures Ashley X has endured. We have created a statement of solidarity to sign onto electronically as an individual or an organization. In its first 24 hours it had received 86 signatures from 24 states, and 7 countries. Please consider adding your name and comments as an
individual, organization or both. Please feel free to pass this on.

A Statement of Solidarity for the Dignity of People With Disabilities
- A Reaction to the "Ashley Treatment"

We, the undersigned individuals and organizations, are in agreement
that the growth attenuation therapy administered to the little girl known as Ashley is an affront to her human dignity, and to that of all people with disabilities. Despite the good intentions of both her parents and the doctors who have treated her in accordance with their wishes, we condemn these medical procedures and declare that it is never ethically acceptable to medically alter a human being for the benefit of caregivers. Such unnecessary medical procedures without
therapeutic indications demean the essential humanity of the person
undergoing them and of all people with similar disabilities. Whether
disabled or not, people must be given the opportunity to grow and
develop according to their own capacity, whatever that may be. It is the duty of both caregivers and the hallmark of a progressive,
civilized society to provide the means by which all of us can reach
our full human potential.

Ashley is impaired by an unknown brain disorder. Our hearts go out to her parents, and we recognize that they love Ashley and are trying their best in very trying circumstances to care for their daughter.

But these unnecessary medical procedures with no demonstrated
therapeutic purpose, in which doctors have surgically and hormonally altered Ashley to remain small and childlike, are misguided. While it is true that none of us can walk in her parents' shoes, we believe that this approach to easing the hardship of caring for a child with
disabilities makes the child the problem, and by doing so, makes it
acceptable for well-meaning people to deny the essential humanity of
people with disabilities in the course of caring for them.

People with disabilities are not the problem. The real issue is the lack of support, care, and help from our social, medical, and civil
establishments for Ashley's parents and for all those who care for people with disabilities. Yes, it is expensive. But the alternative is morally and ethically unacceptable in a society that honors life and
human dignity. We call on our fellow citizens, our government, and our medical establishment to treat people with disabilities as people, not as problems. We stand together and demand that doctors and social service agencies never again use medicine to strip someone of their humanity through medical procedures like the "Ashley Treatment," and
call on our legislators to pass laws that codify the right of people with disabilities to their integrity as people.

To add your name to this document electronically, please go to
http://pub6.bravenet.com/guestbook/501900445 .

To read more about Ashley, go to http://www.ashleyx.info

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