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Pillow Angel
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Pillow Angel |
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hush Senior Member
since 2001-05-27
Posts 1653Ohio, USA |
Any body else hear about Ashley, the "pillow angel?" Some links: http://www.time.com/time/nation/article/0,8599,1574851,00.html http://ashleytreatment.spaces.live.com/blog/ "A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits. Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around. Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body." Thoughts? |
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hush Senior Member
since 2001-05-27
Posts 1653Ohio, USA |
Particularly offensive to me are these statements (by the parents): 'We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers.' 'Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.' As a healthcare professional, I find this offensive- to the first point, many home health care agencies provide respite care from licensed professionals and STNA's, and I'm sure Ashley would qualify for these services. To the second point... I feel almost speechless. The elderly are often abused, as well, so should they have mastectomies? I understand that it isn't the same as breast bud removal... but the removal of breasts because they are an 'inconvenience' and could give caregivers the wrong idea just rubs me the wrong way. 'The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature. Why not let cancer spread and nature takes its course. Why give antibiotics for infections? Even an act as basic as cutting hair or trimming nails is interfering with nature.' Last time I checked, normal growth was not a disease. I know it sounds like I'm arguing with this blog, which makes no sense since, uh, last I check, they don't post here.  I can see the parent's side of this issue, but to me, some of their justifications and points given for why the "Ashley treatment" was pursued just don't pan out. |
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jbouder Member Elite
since 1999-09-18
Posts 2534Whole Sort Of Genl Mish Mash |
Amy: This thread is of particular interest to me and I will return to it as soon as I'm able. For now, I want to address one thing you said was offensive to you: quote: While I cannot yet address my thoughts on this family's situation, I think that you should not be offended by such a statement. It is a matter of fact that different regions, localities, school districts, and health service providers, differ in terms of availability of services and quality. I've said the same thing about my family's situation at times. Oftentimes private insurance does not cover the services and Medicaid reimbursements are often unrealistically low (making the sustainability of high quality Medicaid funded services unsustainable). So I'm not surprised that the parents find the task of securing quality help an impossible one. I'm sorry I don't have the time at the moment to elaborate. I will be back. Jim |
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serenity blaze Member Empyrean
since 2000-02-02
Posts 27738 |
This just blew my mind. These are remarkable, incredible days of medicine, and it doesn't surprise me that there is a flip side to that. I'm not sure how I feel about this--at first, I thought, "how very pragmatic", but I would hate to have to make such decisions myself. But I do feel it nudges us toward the ultimate judgement of possible euthanasia as a "convenience." I dunno Amy. I am still dumbfounded. Here I can't even get a tired old uterus removed and someplace on this planet they are removing a child's breasts? Maybe I missed something. Maybe there is a nuance to this situation that I don't understand. But it just feels wrong. |
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jbouder Member Elite
since 1999-09-18
Posts 2534Whole Sort Of Genl Mish Mash |
Amy: I'm still not sure how to feel about this family's decision. I can see both sides. Trying to walk in their shoes, imagine yourself as a parent faced with the prospect of caring for a disabled child for the rest of your life. When the child is young, you are most probably in the physical prime of your life and can manage. Then you turn 40, 50, 60 and suddenly you find yourself approaching the end of your life and unable to continue caring for your now adult son or daughter. What happens then? Who cares for him or her? Do you ask his/her brother or sister to do so? Is that fair? What if he/she has no brothers or sisters (in fact, or willing to provide the care)? How can you make sure he or she is protected and loved for the duration of his/her life after you are gone? In all honesty, I empathize with this family. I suppose my apprehension brought on by my concerns for the young girl's dignity is at odds with my understanding of what this family is going through. It's a hard life, Amy, as I'm sure you know. Jim P.S. The disability rights parent lists I subscribe to have been conspicuously silent on this issue. Either I belong to the wrong lists or other parents of children with disabilities feel the same ambivalence I do about the whole situation. Or they support the parent's decision. |
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Christopher
Moderator
Member Rara Avis
since 1999-08-02
Posts 8296Purgatorial Incarceration |
At the end of the day, the parents have decided to do something which would ease their lives in caring for the child - which doesn't make them bad at all. They could have given up and decided they weren't up to caring for the child at all... what a horrible burden. They didn't, but found alternatives to enable that continued care. While I don't for a moment wish to ever be in their situation, I empathize with them as much as possible and feel that their efforts are not only noble, but dignified. They aren't dehumanizing the young girl, but enabling the best care that can be provided on a continuous basis. My 2 cents. |
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hush Senior Member
since 2001-05-27
Posts 1653Ohio, USA |
I never said the parents are bad people. At the end of the day, they made the decision they felt was best for their child. Yet, even without walking a mile in their shoes, I do have to question it. It's true that, say, a hysterectomy is not that rare of a procedure, and that this girl will never be able to (willingly) have children, nor does she have any practical use for developed breasts. But I have to question whether a smaller, more childlike body is really more "dignified." Jim, it could be that you're right, and that it is a matter of geographic variance- but at the home health care agency I worked for, medicaid provided for the most comprehensive care available out of our three coverage options (those being medicare, which offers next to nothing, medicaid, and private insurance). I guess it's true though that I shouldn't be offended because I am not in their situation. I guess there is a part of me that feels like its more a trust issue on the parents part, which I guess I also can't fault them with... it's just a knee-jerk reaction on my part as a healthcare worker when I hear somebody talking about removing body parts so that people belonging to my profession won't abuse their child. Also, Jim... the question of who is going to care for this child later in life exists no matter what her size is. I agree that her smaller size will make it possible for them to care for her later than what might otherwise be possible, but they did say this child is expected to have a normal life span. I guess at the end, I'm with Karen. To me, it feels wrong. I'm not really necessarily saying the parents are wrong, because I do think it's a situation that has a lot of nuance, and I can see both sides. And maybe it just feels wrong because it's new, I don't know. I feel very conflicted. |
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