Discussion regarding Ashley’s Treatment, Paula Zahn Now, CNN

Transcript of January 9, 2007

ZAHN: The story we brought you last night about the girl whose parents call her their pillow angel is bringing some incredibly emotional reaction out into the open.

The little girl from Seattle is known only as Ashley. She’s 9 and is severely brain damaged, unable to do anything more than simply lie on a pillow, and unable to develop past the mentality of an infant.

Well, the controversy exploded after her parents decided to stunt her growth, using radical surgery and hormone treatments. They think her childlike size will make it easier to take care of her and will also improve her quality of life.

But not everyone sees it that way.

Medical correspondent Elizabeth Cohen has been sorting through some strong opinions on the Internet.

What are they saying on the blogs tonight?

ELIZABETH COHEN, CNN MEDICAL CORRESPONDENT: Paula, strong, to say the least.

It seems like everyone who blogs these days has an opinion about what these parents have done to Ashley. Namely, they had her uterus removed. They made sure that she will never grow breasts. They have made sure that she will stay around 75 pounds for the rest of her life.

Some of the most scathing criticism, interestingly enough, has come from other parents of severely disabled children, who say: We would never even dream of doing something like this to our child.

Let’s take a look at this first blog, a woman who goes by the alias nufsaid. She had to say: “Ashley’s parents need to be charged with child abuse. Her — quote, unquote — ‘physicians’ need to be locked up for life for mutilation. I am just revolted.”

Another mother of a severely disabled child said: “My son is 11, doesn’t walk, doesn’t talk, et cetera, et cetera. I don’t understand. I don’t understand removing healthy tissue and functioning organs. Growing is not a sin or a disease. It’s what kids’ bodies do, even disabled bodies.”

Paula, one theme of the criticism that you see on blogs is that these parents that — the — the critics say, did this for their own convenience; they did this so that Ashley would just simply be easier to take care of.

And parents that I talked to said: Look, my child is now 150 pounds. They’re teenagers, and I manage to carry them around. These parents can do that, too.

Ashley’s parents say, that’s not why they did it. They said, Ashley will be happier, will be more comfortable at a smaller size — Paula.

ZAHN: So, Elizabeth, it — it is not just the parents of disabled children that are blasting this couple. You also have pretty heated criticism coming from disabled people themselves. What do they have to say?

COHEN: Well, they seem to identify, of course, in many ways with Ashley. They say: She’s disabled. I’m disabled.

Of course, if they’re able to write a blog, they’re not as disabled as Ashley is.

But here’s what one young man had to say. His name is David. He has severe cerebral palsy, and he has a Web site that’s called Growing up with a disability. And he said: “I have a severe disability. I cannot sit up by myself. I cannot walk. I cannot go to the bathroom independently. 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 our — in our society whom this child should trust have betrayed her.”

This is very similar to what many people with disabilities have written on their blogs — Paula.

ZAHN: But you have also seen some positive things written about this family and the very difficult choice they made, along with, I — we should say, doctors and a team of medical ethicists.

COHEN: That’s right. It wasn’t just the parents. Obviously, the doctors consented to do this. And they did this after consulting an ethics board at their hospital.

So, this was a decision that was done over quite a long period of time. And, so, there have been people who are supportive of the parents, some of them other parents of disabled children. But a lot of people just in the general public have been quite — quite supportive.

Let’s look at two comments from the CNN.com Web site. One woman said: “We want our children to be happy. And, in the face of such a heartbreaking disability, why wouldn’t we do everything in our power to obtain that happiness?”

Another person wrote: “I would challenge anyone — I would challenge anyone who criticizes them to spend a day, a month, or a year providing daily — no, hourly — love and nourishment and care from such a human being.”

ZAHN: Well, we are going to talk more about this…

COHEN: Paula.

ZAHN: … Elizabeth Cohen, with a — a man who himself has a disabled son.

Elizabeth, thanks.

We’re going to move on to that now.

There are many parents who care for children like Ashley. Attorney Stephen Rosenbaum’s son, David (ph), is nearly 21 years old with severe mental retardation. He can’t walk. But he does attend public school with an aide. Stephen Rosenbaum is an attorney who specializes in disability cases, and he joins me now.

Thanks so much for being with us.


ZAHN: So, you, more than anybody else, can understand the challenges this family has had in taking care of Ashley. Do you support their decision to stunt her growth, because they say, ultimately, it will improve her quality of life, and make it easier for them to take care of her?

ROSENBAUM: Paula, I have a lot of compassion for this family. And I’m not here to shoot darts at them.

I think it was a very difficult position. I’m concerned that some of the information-givers and some of the helpers in this child’s life and in this family’s life, the doctors, the ethicists, the teachers, the therapists, the social workers, didn’t tell them that there are other options out there besides this.

ZAHN: What would have been some of those options they should have considered?

ROSENBAUM: That they should know that Ashley has a right to develop as a human being. We talk about self-determination in the disability rights and independent living movement.

There are ways. There are supports that are out there. There are services in our school districts, in our hospitals, in our communities. There are teachers and therapists and other professionals and what we call natural supports and family members and friends who are out there to help this child develop into a young person and a young adult, whatever her capacity may be.

ZAHN: Are you convinced, though, that that would have improved her quality of life, because her parents, in their blog, make it pretty clear that they think that the only way to have preserved what little quality of life she has today was by stunting her growth?

ROSENBAUM: I don’t think we can presume what — to talk about what her quality of life would be. I don’t think any person can talk about another person’s quality of life.

We have to respect the fact that disability — as our own Congress recognized in the Americans With Disabilities Act, disability is a natural condition. We’re now living in the year 2007. This family is in Seattle, in a developed, Western, industrialized country. There are resources out there — not enough, and not enough money. But there’s a changing viewpoint, a changing philosophy and social viewpoint that will give support and possibilities to Ash — Ashley and her family.

ZAHN: On their Web site, Ashley’s parents say that this procedure will allow her to be carried, held, and shown affection much more easily. Aren’t those important things in her life?

ROSENBAUM: Paula, of course they’re important. We want to show affection for our children, for all of our children. But any adult child, you don’t cuddle an adult child. She can’t be a doll for the rest of her life. There are ways to express intimacy and affection for adult children.

We have wheelchairs, which are improving with technology all the time. So, a child and a young adult need not be carried around. There are ways to enhance her mobility. There are ways to relate to her, to communicate with her. And, all the time, we have people in our research institutions, in our schools, and in our society who are working harder and harder, with academic research, with practical application and technology, to make life a little bit easier.

We need to find more funding and resources, but we need to strive in that direction.

ZAHN: So, Stephen, had this procedure been available and — and supported, the idea of doing it, by a medical team, would you ever have considered it for your son 10 years ago…


ZAHN: … 15 years ago?

ROSENBAUM: No, I wouldn’t, Paula.

And it’s been difficult for my wife and I. And I don’t want to deny that for a moment. It’s been a very difficult period. There are some bright moments. There are some dark moments. And, so, it’s rough. And, again, I empathize with any family that has to go through this.

But we need to become an interdependent — as much as an independent society, we need to become an interdependent society, and find ways that we can help each other through these processes, and not by artificially limiting a person’s abilities and growth.

ZAHN: Stephen Rosenbaum, we really appreciate your perspective tonight. Thanks.

ROSENBAUM: Thank you.

ZAHN: Appreciate it.

We want to bring out tonight’s “Out in the Open” panel back into the conversation. Is this a case where no one can judge a parent’s decision without being in their shoes? I will ask our panel next.


ZAHN: Welcome back.

You just saw the emotional reaction to the idea of surgically preventing a severely disabled child from becoming an adult. Now I want to turn to our “Out in the Open” panel, Republican strategist Amy Holmes, professor Michael Eric Dyson, and Sirius Satellite Radio host Michelangelo Signorile.


SIGNORILE: That’s it.

ZAHN: But I’m going to call you Mike tonight…

SIGNORILE: Mike is fine, yes.

ZAHN: … because we’re new best friends here.

So, Amy, we have seen this family eviscerated in the blogs. People are calling this surgery mutilation. They say these parents are playing God, along with the — the team of doctors and medical ethicists that agreed that this was the right thing to do.

Do you understand that criticism?


ZAHN: Or do you agree with it?


And I have to say, Paula, I find this deeply disturbing, like something out of a Ray Bradbury novel. I thought that Mr. Rosenbaum in the — before the break, had some very thoughtful things to say.

And we — I think we have to remember that this surgery was entirely elective. And it’s based on a subjective and — determination by the parents of whether or not this child…

ZAHN: Isn’t that the way a lot of surgery is?

HOLMES: Yes, but this is irreversible.

Her bones are fused. She’s had her uterus removed. She’s had her breasts — or budding breasts, as they say — removed. I — I’m just very uncomfortable with this. And I think that that first reaction is — is the right one.

ZAHN: Do you think these parents were justified…


ZAHN: … to go through this procedure?

SIGNORILE: … such a wrenching thing for any of us to think about. And none of us can judge these parents.

Now, I would never say, this is what should be done in every single case like this. It has to be a case-by-case basis. They went to ethicists. They spoke with doctors. It is about her quality of life. And it’s about whether or not they’re going to be able to take care of her when she’s older. If she grows bigger, it’s going to be difficult. And I think…

ZAHN: Does she have the right to what Dr. — Mr. Rosenbaum was saying, the right to self-determination?

SIGNORILE: Well, but they’re already determining.

They have a feeding tube in her. Medical technology has made that available. If we didn’t determine that she should be alive, she would not be alive. So, of course, she is in their care. And she doesn’t have self-determination. She’s only the mind of a — of a, you know, less than 1-year-old.

And I think these decisions have to be made in consultation with ethicists. And I think they did a difficult, but something none of us can judge.

ZAHN: Do you think this is a slippery slope?

DYSON: Oh, absolutely.


ZAHN: And — and, first of all, do you support what the parents did?

DYSON: Look, I’m — I’m torn on this.

On the one hand, you know, I have a Ph.D. in ethics. So, I understand the — in religious ethics — I understand the critical considerations you have to give to what decision you make about another human being.

Other-abled people, so-called disabled people, have argued that: We have a right to self-determination, and we have a right to live our lives out as full and as flourishing as the context and circumstances of our lives provide.

However, the question is for these parents, who have to take care of these — this child, of Ashley. Ashley is not just a cog in the machinery of somebody’s medical ethics. She’s a person. How do you determine personhood? How do you determine identity?

It’s very difficult. Unless you walk in somebody else’s bedpan, unless you understand what it means to change them and to deal with that child, you don’t know the — the wrenching, gut-tearing…

ZAHN: All right.

DYSON: … circumstances to try to deal with that.


ZAHN: But, on the other hand, you feel that there is a potential downside to this…

DYSON: Well…

ZAHN: … as other parents see this procedure taking place.

DYSON: … of course.

ZAHN: What is it that you fear?

DYSON: Well, one thing you fear is that this will be rapidly proliferated; a lot of people who have access to it will end up doing it. That’s what you feel on the one hand.


ZAHN: This is a very rare condition.


DYSON: Well, but — but it is…

ZAHN: But are you talking about making a similar decision…

DYSON: About other areas.

ZAHN: … with other — when someone is…


ZAHN: … mentally compromised…


DYSON: It’s an analogous situation for other medical procedures that are — that are severe and that demand extreme intervention and intrusion by the — by medical professionals. That’s what I’m saying. It’s very difficult.

HOLMES: But let’s also say that this is irreversible for the parents speculating that they may have trouble being able to deal with her, if she were to become fully grown.

ZAHN: But they didn’t make this decision in a vacuum.

HOLMES: They didn’t. But they did go to the doctors. And the doctors’ first reaction was horror and recoiling at the idea of doing this.

I think that it’s important to remember, medicine — the first principle of medicine is to, first, do no harm. And medicine is supposed to be allowing the person to be growing into a full person. And, in this case, I mean, we’re using the words…


HOLMES: … “stunting her growth.” DYSON: Well…

SIGNORILE: Her condition is irreversible.

DYSON: Right.

SIGNORILE: She will always be in this condition. And there were many doctors who supported their decision.

And none of us could possibly understand what it was that they went through. And none of us could understand what she is going through. For any of us to make this decision for them, I think, is.

HOLMES: But I’d like to jump in there because the parents did — they did start their own blog. They call it the “Ashley Treatment”. And it was — the purpose is to reach out to other parents who might be dealing in similar circumstances. So they have invited our criticism and our analysis.

DYSON: But they’ve also tried to…

ZAHN: But they’re not trying to convince other parents to do it. They’re sharing.

DYSON: … but they’re looking for help otherwise. Look, they had a panel of medical experts and ethicists. You can have an ethicist that will say it’s a good thing. You can have an ethicist that says it’s a bad thing. So we don’t know. Ultimately, it is irreversible. But her condition was irreversible. So what do we do in the light of the fact that these parents have to hour by hour take care of Ashley and deal with her? We don’t know the difficulty of doing that.

ZAHN: Quick short answer from all of us. If this had been your child, could you have made the same decision?

SIGNORILE: Wrenching, wrenching decision…

ZAHN: Would you have possibly made the same decision?

SIGNORILE: I think I could have based on…

ZAHN: And what about you, Mike?

DYSON: I don’t know.

ZAHN: You don’t know.

HOLMES: I think the parents deserve tremendous compassion for taking care of her in and out every day. A lot of parents would have walked away from this. But I don’t think that’s a decision I could have made.

ZAHN: All right, you three. We’ll be coming back to you a little bit little later on because there’s a lot more to talk about. Coming up, schools are supposed to set an example to help our children grow up to be good citizens. We hope. Coming up, we’re going to bring some questionable lessons out into the open. Why won’t another school allow a hearing impaired boy to bring his specially trained dog to class? You’ll hear the debate when we come back.