Should severely disabled kids be kept small?

[JohnCWalker]

I do walk in the same shoes as these parents as I not only have a daughter in a similar condition, but mine is in a worst state, will be more difficult to care for at home, and I have second child with special needs as well to care for.

However, objective morality cannot simply use circumstances to justify an immoral act. The Church teaches that it is an “error judge the morality of human acts by considering only the intention that inspires them or the circumstances which supply their context.” (CCC, 1756)

These medical interventions are addressed by the Church and “[e]xcept when performed for strictly therapeutic medical reasons, directly intended amputations, mutilations, and sterilizations performed on innocent persons are against the moral law.” (CCC, 2297). “Therapeutic” is “of or pertaining to the treating or curing of disease; curative.” (Dictionary.com, 2007).

First, these medical interventions DO NOT treat her disease, but attempt to alleviate a social defect in our inability to adequately support this family in their home care of this child (which is the goal specified in the cited Pediatrics and Adolescence Medicine Journal). Her brain dysfunction is a consequence of original sin and should be treated, but her normal growth is part of the grand design of the human body.

Second, the parents admit in the blog itself that their reasoning is “intuitive” and that “we do not know of a study to reference that provides us with an objective and quantitative understanding of these benefits.” (Ashley Treatment, 2007). Even the abstract of the one medical journal cited only hypothesizes a benefit (“home care”), but establishes no quantitative framework to provide a statistical justification for such a medical intervention. (Arch Pediatr Adolesc Med, 2007).

Third, while I’m not a theologian, I would argue that these acts commit the gnostic heresy that implies we are spiritual creatures merely trapped in our bodies. While 70% of Americans claim to be Christian, they often forget that we believe in a physical resurrection. Humans are both physical and spiritual creatures, incomplete without the other, and to deliberate mutilate the physical is to rob one of the inherit dignity as a complete human person.

Finally, it comes to no surprise that the parents now feel like “heroes” after receiving the number of public comments that they were “courageous” (Ashley Treatment, 2007). This is pure doublespeak to assign courage to indviduals who 1. only made this public after they committed the sin (and only because of a research article) and 2. continue to remain anonymous. They are hiding just as Adam and Eve did in the garden after eating from the forbidden tree.

References​

Unisted States Catholic Conference, Inc. (1994). English translation of the Catechism of the Catholic Church. Washington, DC: United States Catholic Conference.
Lexico Publishing Group, LLC. (2007). therapeutic. Retrieved January 6, 2007 from dictionary.reference.com/search?r=2&q=therapeutic.
Anonymous. (January 3, 2007). The Ashley Treatment. Retrieved January 6, 2007 from ashleytreatment.spaces.live.com.
Gunther, Daniel F. and Diekema, Douglas S. (2006). Attenuating Growth in Children With Profound Developmental Disability. Retrieved January 6, 2007 from archpedi.ama-assn.org/cgi/content/short/160/10/1013.

 

[st_ignatius110]

It is amazing to look at Ashleys pictures. She is a beautiful girl. Her parents say she has the mind of a three month old but she looks much more alert then most 3 month old babies.

 

[Lrning]

…However, objective morality cannot simply use circumstances to justify an immoral act. The Church teaches that it is an “error judge the morality of human acts by considering only the intention that inspires them or the circumstances which supply their context.” (CCC, 1756)

These medical interventions are addressed by the Church and “[e]xcept when performed for strictly therapeutic medical reasons, directly intended amputations, mutilations, and sterilizations performed on innocent persons are against the moral law.” (CCC, 2297). “Therapeutic” is “of or pertaining to the treating or curing of disease; curative.” (Dictionary.com, 2007).

First …

Awesome post!

 

[siamesecat]

Idk how I feel. I’m sure the parents meant well. I kind of disagree with the major surgery - hysterectomy and breast reduction - that seems to be an unecessarily risky and painful procedure. I don’t advocate things like this with say a child with Down Syndrome who could one day have a simple job and somewhat of an independent life. But this girl is virtually an infant - she can do nothing on her own. I can see how once she is unable to be carried this could be a problem, as is caring for her during her period etc. I don’t think hormones are unethical - they’re not doing it to dehumanize her, but she will never have an adult life, and this will make her care more manageable. If there’s no pain, I don’t see a problem really. Although, I’d see this as more necessary maybe for a very violent severely disabled person. I don’t know if I’d say it’s right, but so many severely disabled children become violent, especially males with their sex drive, and if this progression could be stopped, I don’t necessarily see it as evil. I am very close with a young autistic boy and I can see how difficult he will be as a teen - I can definately see him growing violent and sexually inappropriate as a teen - too unmanageable.

 

[JohnCWalker]

It is amazing to look at Ashleys pictures. She is a beautiful girl. Her parents say she has the mind of a three month old but she looks much more alert then most 3 month old babies.

A profund brain dysfunction can affect different areas of the brain in different ways. Alertness is part of the primitive brain and if that is relatively intact, then you would see possible maturation of those functions.

When therapists evaluate the ability of such a child, it is typically in the context of skills that involve much if the grey matter: the higher brain and its cognitive functions. Furthermore, there are many different tests for different skills that rate all at different levels, so in many cases one would just “average” the overall ability. For my daughter, most things she rates at is 1 month, and maybe 1 or 2 at 4 months.

 

[JohnCWalker]

Although, I’d see this as more necessary maybe for a very violent severely disabled person.

Your post brings out an important observation. When a brain dysfunction has physical manifestations, such as violence, then medical science is prudent to apply technologies such as hormone therepy to deal with it. It is a symptom of the disease.

Unfortunately, in the case of Ashley X, they are not treating a symptom of her brain dysfunction. Her growth is normal and natural and, in fact, she is average size for her age.

Furthermore, in a profession that says “first do no harm”, they have to remove the breast buds and uterus to deal with the harm they inflicted by overdosing her on estrogen.

 

[Fergal]

Idk how I feel. I’m sure the parents meant well. I kind of disagree with the major surgery - hysterectomy and breast reduction - that seems to be an unecessarily risky and painful procedure. I don’t advocate things like this with say a child with Down Syndrome who could one day have a simple job and somewhat of an independent life. But this girl is virtually an infant - she can do nothing on her own. I can see how once she is unable to be carried this could be a problem, as is caring for her during her period etc. I don’t think hormones are unethical - they’re not doing it to dehumanize her, but she will never have an adult life, and this will make her care more manageable. If there’s no pain, I don’t see a problem really. Although, I’d see this as more necessary maybe for a very violent severely disabled person. I don’t know if I’d say it’s right, but so many severely disabled children become violent, especially males with their sex drive, and if this progression could be stopped, I don’t necessarily see it as evil. I am very close with a young autistic boy and I can see how difficult he will be as a teen - I can definately see him growing violent and sexually inappropriate as a teen - too unmanageable.

So would you suggest that chemical castration is ok for this young autistic boy then?

AS far as I can see, a lot of perfectly able bodied males and females also go on to become violent. Haven’t you heard of rape, battery and murder? Seems to me that there are a greater number of able bodied and non criminally insane folks who are committing these crimes.

What is happening here in this post highlights the fact that people with mental retardation can fall prey to unnecessary actions when people with greater intelligence decide to take advantage of them.

Violent and severly diabled? I would like to see that data please.

 

[Jennifer_G]

Most average height women, when a child is diagnosed with dwarfism before birth, are strongly advised to abort. In general, society is working to eliminate dwarfism through abortion (a similar reduction in downs births is recorded because of abortion).

This is dancing further down the path to killing disabled children after birth - it is sickening. It is not a comparison, it is a way for these medical “professionals” to de-humanize that child.

At this rate, I wouldn’t be surprised if congress (and other governments) wound up making a law that it’s “Child Abuse” to give birth to a disabled child, or even some child not within a pre-defined genetic blueprint. And here I thought that idea ended 62 years ago.

 

[Durendin]

I fully see why this might seem upsetting for a lot of people reading this story and why you object, but having read more of it, I can see why the parents have done what they did.

If it offends anyone, then I would ask you to consider the alternative of dumping her in an institution also insults your morals when her parents are unable to cope? If it helps them have her in a loving home where she will be cared for as long as possible by her family and increases her quality of life then I can’t find it in me to condemn this.

 

[Karin]

I fully see why this might seem upsetting for a lot of people reading this story and why you object, but having read more of it, I can see why the parents have done what they did.

If it offends anyone, then I would ask you to consider the alternative of dumping her in an institution also insults your morals when her parents are unable to cope? If it helps them have her in a loving home where she will be cared for as long as possible by her family and increases her quality of life then I can’t find it in me to condemn this.

smileys.smileycentral.com/cat/36/36_20_2.gifyou are joking right?

smileycentral.com/sig.jsp?pc=ZSzeb112&pp=ZN

 

[Durendin]

smileys.smileycentral.com/cat/36/36_20_2.gifyou are joking right?

Unfortunately, I can’t see the image that comes with what you said due to a web filter (at work!) but I’m not joking.

Did the parents act out of love or hate? Personally, I find this sort of thing to be of critical importance in the perception of what it is to be a Catholic/Christian. A large perception of the faith from the outside is that it contains judgemental hypocrites and busy-bodies who have a great idea of how others should live their lives without putting their money and themselves where their mouths (all too frequently!) are.

Don’t like it? What you going to do about it? Nothing but complain and write letters to political figures to condemn the parents further, but who here is realistically going to raise a hand in help? (I’ll stand back to avoid the stampede! ) The only people who deserve an opinion on this are those in the same situation.

 

[Karin]

Unfortunately, I can’t see the image that comes with what you said due to a web filter (at work!) but I’m not joking.

Did the parents act out of love or hate? Personally, I find this sort of thing to be of critical importance in the perception of what it is to be a Catholic/Christian. A large perception of the faith from the outside is that it contains judgemental hypocrites and busy-bodies who have a great idea of how others should live their lives without putting their money and themselves where their mouths (all too frequently!) are.

Don’t like it? What you going to do about it? Nothing but complain and write letters to political figures to condemn the parents further, but who here is realistically going to raise a hand in help? (I’ll stand back to avoid the stampede! ) The only people who deserve an opinion on this are those in the same situation.

they had no respect for the human body for the human person…how is that loving!!! They are no better than my local butcher,IMHO, for what they did to that poor girl!

 

[Durendin]

I strongly urge you to read the second and last paragraph I posted, if not the whole thing again and consider what I asked. I’m not calling you names and it’s not my intention to insult you, but paragraph two?

Also, would locking her away in an institution be more respectful for the human body and human person if her parents decided that they couldn’t cope?

 

[Karin]

I strongly urge you to read the second and last paragraph I posted, if not the whole thing again and consider what I asked. I’m not calling you names and it’s not my intention to insult you, but paragraph two?

Also, would locking her away in an institution be more respectful for the human body and human person if her parents decided that they couldn’t cope?

Yes it would be more respectful to her body/person than having her butchered!

Did the parents act out of love or hate? Personally, I find this sort of thing to be of critical importance in the perception of what it is to be a Catholic/Christian. A large perception of the faith from the outside is that it contains judgemental hypocrites and busy-bodies who have a great idea of how others should live their lives without putting their money and themselves where their mouths (all too frequently!) are.

Ok I re-read the whole thing again…
Once again the Church not some random hypocrites and busybodies have stated what respecting the body /person is.
Did they follow what the Church has taught…I think not.

 

[Durendin]

So what is the Church doing to actually help people in this situation then? What are people who are actively condemning this doing to help? (The stampede turned out to be a random tumble-weed!) It’s remarkably easy to stand and dictate what “should” be done (position of the Church), the reality of doing it is a world away.

And if locking people away in asylums and institutions is the answer then flesh is more important than spirit.

 

[JohnCWalker]

I fully see why this might seem upsetting for a lot of people reading this story and why you object, but having read more of it, I can see why the parents have done what they did.

If it offends anyone, then I would ask you to consider the alternative of dumping her in an institution also insults your morals when her parents are unable to cope? If it helps them have her in a loving home where she will be cared for as long as possible by her family and increases her quality of life then I can’t find it in me to condemn this.

“A morally good act requires the goodness of the object, of the end, and of the circumstances together.” (CCC 1755).

In fact, “It is therefore an error to judge the morality of human acts by considering only the intention that inspires them or the circumstances…which supply their context. There are acts which, in and of themselves, independently of circumstances and intentions, are always gravely illicit by reason of their object.” (CCC 1756(

Regardless of their intentions and the circumstances, if the object matter is intrinsically evil (which it is, see my post), then the act is evil.

Would you show me a study that shows that home care is better than in-patient care? To the contrary, Soderstrom et. al. concluded that “[t]he limited existing evidence indicates that, compared with hospital care, acute home care produces no notable difference in health outcomes.” (Soderstrom, et. al., 1999).

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Soderstrom, L., et. al. (1999). The health and cost effects of substituting home care for (name removed by moderator)atient acute care: a review of the evidence. Retrieved January 12, 2007 from pubmedcentral.nih.gov/articlerender.fcgi?artid=1230267.

 

[JohnCWalker]

So what is the Church doing to actually help people in this situation then?

Examples include Holy Angels, NC and Missionaries of the Poor.

What are people who are actively condemning this doing to help? (The stampede turned out to be a random tumble-weed!)

“Every word or attitude is forbidden which by flattery, adulation, or complaisance encourages and confirms another in malicious acts and perverse conduct.” (CCC 2480). At a minimum those critical of this are ensuring that they themselves are not cooperators in the evil.

It’s remarkably easy to stand and dictate what “should” be done (position of the Church), the reality of doing it is a world away.

The Church is YOU! “By reason of their special vocation it belongs to the laity to seek the kingdom of God by engaging in temporal affairs and directing them according to God’s will.” (CCC 898).

For me personally, it is not a world away. I am blessed to take care of Mary Beth, a child just like Ashley X:

http://tkfiles.storage.msn.com/x1pM...BFRI-OypoZgOJtS55l4djz5FubJkAt_PskXRKvBHT0YSY

 

[Karin]

Examples include Holy Angels, NC and Missionaries of the Poor.

“Every word or attitude is forbidden which by flattery, adulation, or complaisance encourages and confirms another in malicious acts and perverse conduct.” (CCC 2480). At a minimum those critical of this are ensuring that they themselves are not cooperators in the evil.

The Church is YOU! “By reason of their special vocation it belongs to the laity to seek the kingdom of God by engaging in temporal affairs and directing them according to God’s will.” (CCC 898).

For me personally, it is not a world away. I am blessed to take care of Mary Beth, a child just like Ashley X:

http://tkfiles.storage.msn.com/x1pM...BFRI-OypoZgOJtS55l4djz5FubJkAt_PskXRKvBHT0YSY

she is beautiful…GOd Bless you all!

 

[jmcrae]

So what is the Church doing to actually help people in this situation then?

Have you ever heard of the L’Arche Society? It’s a Catholic organization that’s been working with brain-injured and mentally disabled people for quite a long time, now.

Their “institutions” are home-like settings where everyone - the nurses, doctors, and volunteers, together with the less able brothers and sisters - all live together and take care of each other.

 

[ems3]

JohnCWalker, your little girl is beautiful! These children are such special blessings, aren’t they? I wish I were not techno-challenged so I could share a picture of my daughter, too.

My dd, Sydney, will be 14 on Jan. 16th. She is severely disabled: severe/profound mental retardation, cerebral palsy. She doesn’t walk or talk or do anything for herself. Requires complete care like an infant. She is almost as big as me, probably about 5 feet tall and weighs at least around 90 lbs.(not sure as she hasn’t been weighed in a few years when she was about 80lbs.).

I do worry about always being able to physically care for her. I think if there were a safe, non-invasive way to keep her from getting too large/heavy, I would have considered it. As it is now, she is probably about done growing (height wise) and we just need to make sure she doesn’t get too heavy.

I would never consider putting her through surgery unless it were a medical neccessity. A hysterectomy is major surgery! To me, that would be unneccesarily cruel and cause her much suffering and pain. Removing breasts also seems extreme and unneccesary. I also would not give her a bunch of hormones. Common sense just says this can’t be good for her.

Sydney did go into puberty early. She started menstruating before she was 10. It isn’t too big of a deal, really, just a little inconvenient and messy. She suffers some discomfort due to her period, but nothing compared to major surgery and doses of hormones. Her breasts are small, she is able to wear sports bras; again, no big deal. Now if she did have huge breasts (which doesn’t seem likely as she doesn’t have a lot of body fat), maybe there would be a medical reason for breast reduction.

When I first read the article about Ashley, I admit I was kinda sympathetic towards the parents. I understand their point of wanting to keep her home. My greatest fear is that I won’t always be able to care for my precious dd. And of course it gets harder to care for our kids as they grow larger and we grow older. Sydney doesn’t get out and about as much as when she was smaller simply because it is so much more difficult, complicated, and time consuming. Just changing her diaper while we are out is a major project requiring (ideally) at least 2 people and usually a trip back to the van. So yes, I agree with their desire to keep their child small in order to make her quality of life better. But when I read what they actually did to accomplish this and then I saw her picture(which makes her more real and makes me think of my own child), I felt sick inside. I could NEVER consent to mutilating a child this way.

I don’t doubt that Ashley’s parents love her deeply and want the best for her. I do think it’s wrong to put her through what they did when it wasn’t truly neccessary. I think that the risks, pain and suffering she has gone through far outweigh any advantages.