Ashley and the disabled

January 15, 2007 | Human Life | 12 comments

***UPDATE*** David has a good update about the post I quoted below.

—————

After reading a post on Catholic Pillow Fight I became aware of the horribly sad story of Ashley. I have sympathy for her parents, but I think what they did was wrong. I was Googling around to see what others had to say about this issue and came across many solid, academic treatments of the subject that made strong points and addressed the subject well.

But nothing quite compares to this post by David. An excerpt:

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.

Go read the whole thing, it’s excellent (skip the comments if you’re easily offended by profanity). I’m thankful to have discovered David’s blog. His story and his coverage of these types of issues is thought-provoking and powerful.

12 Comments

  1. Mike

    Wow! The comments to David’s initial post got nasty fast.

    I’ve been following the stories on Ashley’s treatment since they first made headlines. I don’t like the ethical gray areas the parents and doctors strayed into. I’m especially concerned about the doctors- the treatments were and are an ethical minefield.

    I can understand where the parents are coming from. They’re in a hard spot no matter what decision they make. Their decisions are problematic and controversial, but I think they made them out of love for their daughter. It’s easy to point and cynically accuse them of serving their own convenience.

  2. Tony

    My take on the whole thing as a Catholic is that Ashley is endowed by her Creator with dignity simply because she is one of his people.

    Abled, disabled, intelligent, retarded, born, pre-born or embryonic, we are all people and have dignity as people.

    I read on Happy Catholic (I think it was) that all sin is treating people like objects, including yourself. I think as much as Ashley’s parents talk about their love for her, I don’t believe they are treating her like a person at all, more like, as someone else mentioned, a pet.

    And doing evil out of your perception of “love” does not transform it into a good act. People who kill loved ones who are in great pain go to jail.

  3. Anonymous

    Check out Wheelie Catholic. I think you’d enjoy her blog.

  4. Mike J

    Look at this research.

    Seems this sort of eugenics is not restricted to the disabled.

  5. David

    Thanks, Jennifer.

    I enjoyed looking at your blog, too. I’ll be back.

    Wheelie Catholic has a perspective you might be interested in also.

    Best,
    David

  6. Milehimama

    I’ve been thinking of making a post about this story on my blog.
    What really gets me, I think, is that the parent’s obviously have their reasons for caring for her themselves – I’m sure quality of care came into play.
    And yet, they purposely mutilated their daughter for their own convenience.
    Would they have let a nursing home do that?
    I can certainly sympathize with the plight of a parent who is trying to care for a child who is physically unweildy. My own son is not in a coma, but has a disorder that can cause him to rage for hours at a time – we’re talking about knocking down door/holes in the wall kind of tantrums. Even when he was 5 or 6 it was becoming difficult for me to manage to get him to his room (a place we had made safe for him). But would I deny him exercise, so his muscles would be weaker? Cut back on protein, feed him less than nutritious food so he would grow weak and remain small? Is that how a parent loves their child?
    I’m sure the parents love their child – they didn’t know what to do and then the people they turned to for advice let them down.
    I fault the doctors, who did not cousel the distraught, stressed out parents properly. Who ignored the mandate, “first, do no harm”, and put a medically fragile girl under full anesthesia, performing an operation with all of its attendant risks, to remove healthy tissue that was functioning exactly as it should! Can you imagine if the girl had been able to speak, walk, communicate? “Doctor, my hormones are working correctly. I have a healthy body and it is growing exactly the way it should. I’ll be developing breasts and menstrating soon. Can you do something about that?” Would the operation still be performed?
    I think the doctors should be sued for malpractice.

  7. lyrl

    I don’t see the pet comparison; a pet in Ashley’s condition would be put down.

    Thousands of women have breast reductions every year. Women with BRCA mutations are encouraged to have prophylactic mastectomies. If a woman is bothered by very heavy or painful bleeding, hysterectomy is a treatment option. I don’t see these procedures as inherently “mutilating”, though certainly the potential risks must be weighted against the potential benefits.

    People have commented on the parent’s convenience. Is it really un-Christian for people to take their own desires into consideration? The Bible says to “love your neighbor as yourself”. Not more than yourself. I believe that if you take care of yourself, then you have more to give.

    Argument that the risks of the treatments outweigh the benefits is one thing. Categorically dismissing the possibility such treatment could have benefits isn’t something I really relate to.

  8. Jerret

    milehimama –

    “Can you imagine if the girl had been able to speak, walk, communicate? “Doctor, my hormones are working correctly. I have a healthy body and it is growing exactly the way it should. I’ll be developing breasts and menstrating soon. Can you do something about that?” Would the operation still be performed?
    I think the doctors should be sued for malpractice.”

    No, because she couldn’t. That’s the entire point.

    Sued for malpractice? For doing what the legal guardians of a child unable to speak/decide for herself asked them? Right. Maybe the parents made the right choice, maybe they didn’t, but regardless of what anyone thinks, it was their choice to make.

  9. Jennifer F.

    Thousands of women have breast reductions every year. Women with BRCA mutations are encouraged to have prophylactic mastectomies. If a woman is bothered by very heavy or painful bleeding, hysterectomy is a treatment option.

    Lyrl – I see what you’re getting at, but I think the issues are: a) do her parents have the right to make that decision for her? and b) is the fact that she will be easier to care for a strong enough reason to make it ethical? I agree that breast reductions, hysterectomy, etc. are not categorically bad. If I decide to have a hysterectomy that’s one thing; but if I decide that someone else needs to have a hysterectomy to make life easier for me, it’s a much trickier issue.

    I believe that if you take care of yourself, then you have more to give…Categorically dismissing the possibility such treatment could have benefits isn’t something I really relate to.

    I think that people are categorically dismissing it because it sets such a dangerous precedent. I think that those of us who are really disturbed by this are just freaked out about society starting to accept caregivers making radical, permanent changes to their charge’s bodies in order to make them more convenient to care for.

    I see what you’re getting at with the parents wanting to take steps to make her easier for them to take good care of, and I’m sure that that was their goal here. But where does it end? We want to be very, very, very careful about opening the doors to this sort of thing. The disabled have not typically fared well throughout history, and I think mistreatment of the them often starts with little things like this, treating them with a little less dignity than you’d treat others “for their own good,” etc. Well-meaning people often open the floodgates for evil they never intended.

  10. Anonymous

    There’s also the point that these procedures, with their inherent risks, were done preventively on a 6 year old. They were not done because her breasts were causing her pain, or because her menstrual period was causing her undue stress, etc. Surely, there are less risky ways to address potential problems.

  11. Ersza

    I heard a representative from the hospital that performed these procedures speak. He said that the ethics committee at first was going to refuse the parents’ request to perform these procedures, but that in the course of their investigation, they came to the conclusion that the parents’ motives were selfless, and that this truly would help their daughter. He said that they would not necessarily ever do this again for another disabled patient, and that it set no precedent.

    Personally, I think it’s very hard to judge this from the outside. Ashley is profoundly disabled, and will never have the intellectual capacity to understand the procedures that have been performed on her. If she had grown to her full size, her parents would have had to institutionalize her. They altered her growth so that they could keep her at home. That sounds like love to me, and it sounds like human dignity. As another commenter correctly observed, a pet would have been euthanized already. Quality of life is a good reason to perform surgery sometimes, and these are not particularly risky procedures, nor particularly painful. Ashley will be okay. Her parents are taking care of her. You can find a lot of disabled kids in institutions, or up for adoption whose parents are not taking care of them. Why are we criticizing Ashley’s parents, then? Why not criticize the thousands of parents who have not stepped up to the plate when they had a disabled child?

  12. lyrl

    From my own perspective, a shorter than average, flat-chested, non-cycling person is just as dignified as an average heighted, busty, cycling person.

    While I oppose most elective surgical body modifications, the dignity I believe they violate is in the self-image of the person whose body is involved. For me, these dignity-based objections simply do not apply to a person whose self-image is never going to progress beyond that of a six-month old.

    Instead, my concern is about the physical risks of her treatment (anesthesia reactions, infection, blood clots from the estrogen, etc.) – especially considering her age and possibly fragile health due to her disability – and the pain the surgical procedures undoubtedly caused her.

    There seems to be a large difference in my willingness to weigh the risks and benefits of this treatment (I have not done sufficient research to know whether I agree or disagree with each aspect of the treatment), versus others’ belief any benefits could never outweigh the harm of this treatment. Perhaps it lies in the definition of “dignity” we use.

    Although I notice that Jen has not used the word dignity at all in her posts, so perhaps I have not had any insight into her position.

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