Protesting against pity
Over the labor day weekend, the disability community spoke out against the use of pity in the MDA Telethon. For links to posts about the telethon, click here.
Showing posts with label disability perspective. Show all posts
Showing posts with label disability perspective. Show all posts
Sunday, August 12, 2007
AMA Journal Doc-to-Doc Exchange
Thanks to a heads up from Emi Koyama of Portland, Oregon, FRIDA has learned that the June edition of the Archives of Pediatric and Adolescent Medicine (APAM) features a letter exchange in their "Pediatric Forum" section, which is basically like letters to the editor but allows for authors of articles to respond to letters. The APAM is published by the AMA but maintains that it is editorially separate from the AMA.
The letter exchange addresses the omission of Ashley X's breast bud removal in the original APAM article on Ashley X in October of 2006 and whether the article was misleading as to the intentions of Ashley's parents and doctors. Here goes:
From the Archives of Pediatric and Adolescent Medicine Volume 161, June 2007, The Pediatric Forum:
Only Half the Story:
The authors of the article “Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma” discuss the ethics of inducing intentional growth stunting to facilitate the care of a child with developmental disabilities. However, according to TIME magazine, these authors are telling only half the story. In their article in the Archives, they discuss administrating high-dose estrogen to fuse the child’s epiphyses and limit growth. However, the TIME article also states that the child’s breast buds were surgically removed to decrease the chance of her developing fibrocystic disease or being uncomfortable with her rehabilitative equipment. She also underwent a hysterectomy to prevent problems in the future related to menses. Thus, it appears as if the child’s family did not merely wish to limit her size to facilitate taking care of her; they also wanted to infantilize her and remove any evidence of puberty and maturation. In this they were aided and abetted by their physicians. The argument that menses would be messy or that she required a prophylactic mastectomy for fibrocystic disease cannot seriously be considered as medical indications for her surgery. If so, why not also do a colostomy and urinary diversion to facilitate nursing care? Why not do a prophylactic appendectomy to prevent potential episodes of appendicitis?
I consider this article, with its emphasis only on the ethics of height reduction, to be very misleading.
Carole L. Marcus, MBBCh
Correspondence: Dr. Marcus, Pulmonary Division, Children’s Hospital of Philadelphia, 5th Floor Wood, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104 (marcus@email.chop.edu).
(***Note from FRIDA: the TIME article Marcus refers to is the January 11 article titled “Pillow Angel Ethics” by Nancy Gibbs. Gibbs published two stories on Ashley X, one from the parents’ standpoint and one from the disability community’s standpoint, essentially bisecting the dialogue and keeping both sides well away from one another.)
***
In Reply
Carole Marcus suggests that because we did not discuss the patient’s breast surgry, our article told only “half the story” and was therefore misleading. We would respectfully disagree. The purpose of reporting this case was to focus attention and debate on the practice of attenuating growth in children with severe developmental disability as a strategy for improving the quality of their lives. There are many aspects of this patient’s medical care that do not directly bear on this issue and were not reported. The hysterectomy was included in the discussion only because it was directly relaed to the complications of estrogen treatment. The medical rationale for hysterectomy is well covered in the article. Breast bud removal was a completely separate request and raised a different set of issues that were unrelated to growth attenuation (as was the incidental appendectomy that was performed).
These several different medical and surgical interventions were each done for different reasons and were considered to be separate requests. Lumping them into a monolithic “Ashley Treatment” is a convention of the parents and the media, not her physicians. The exclusion of breast bud removal fro our discussion should make clear that we do not consider that procedure to be a necessary or routine part of growth attenuation therapy.
Finally, we would also disagree that the motivation of these separate medical and surgical interventions was to “infantilize: the patient and remove any “evidence of puberty and maturation.” It was certainly not a motivation of anyone involved with the decision. The motive was always improving the quality of this child’s life. While this patient will remain short (4’6” [1.4 m] is hardly infant size) and will not develop adult female breasts, she will continue to produce estrogen and mature normally.
Daniel F. Gunther, MD, MA
Douglas S. Diekema, MD, MPH
Correspondence: Dr. Gunther, Division of Pediatric Endocrinology, Children’s Hospital and Regional Medical Center, 4800 Sand Point Way NE, Seattle, WA 98105 (dan.gunther@seattlechildrens.org).
***
What do you all think of this? Please recall that the APAM declined to print a similar letter from FRIDA, stating that they had decided to publish other articles with similar content.
In my personal opinion (not officially speaking for all of FRIDA here, though certainly speaking as a person working to see concrete social change come out of the problems brough up by the Ashley case), while I am encouraged that the APAM deems the Ashley X issue of enough importance to make the editorial decision to publish the above exchange, and that the APAM's publishing of the exchange will continue to push medical professionals to think about the rights of all human beings, I am bothered by some items in the response from Seattle.
Is health care really a simple matter of so many various small requests to fix this and that? Who is really responsible for understanding the whole picture of the care of any person (as opposed to just the care of people who are unable to communicate for themselves)? Are all of the pieces of the puzzle simply not meant to be pulled together for some greater meaning? This is a bit a la carte here.
In addition, let's remember a couple of other things. Seattle Childrens' WAS the subject of an investigation by the state Protection and Advocacy agency on the case of Ashley X. The hospital did fail to make sure that her legal rights were not protected and so the hospital is now supposed to be complying with a settlement agreement regarding sterilization and the rights of people with disabilities.
Furthermore, Seattle Childrens' pediatric bioethics center hosted a one day conference on the Ashley X issue alone, and the issue was also brought up in last month's pediatric bioethics conference. Clearly there is an effort to get the air clear on whether what was done to Ashley was the right thing to do, and to get people thinking about how to make good decisions.
I think that for Ashley's doctors to step back from the fray and essentially say, "Hey, we were only fulfilling some requests," when in reality they have been embroiled in legal and ethical clean-up, is misleading. Granted, this whole exchange may have been written quite some while back given APAM editorial and printing deadlines, but this, to me, is the big deal:
A society that says it's ok to medically alter someone's body to support what is seen as the average accepted lifestyle norm is not a society that respects people.
Some people may find that perspective hurtful and not respectful of folks (like parents and docs) who want to do the best thing possible. I fully accept that people are well-intentioned, but I firmly believe that we can all together give this whole boat of pain a U-turn and instead work towards building the kind of society that is inclusive of the people that we naturally are (not our altered selves).
In my (again, personal) opinion, I think there are effective action steps that we can take towards making things better. We as a society need better cooperation between the medical community and, well, the rest of us. We need better legal protection and oversight. We need more meaningful public dialogue about disability and medicine. We need more MONEY to protect health care and support community choice. We need meetings, forums, appointments, workshops, conferences, bill-writing, media education, disability inclusion in medical education, and most of all we need PEOPLE who are dedicated and willing to work hard to make these things happen. Some folks already are and I applaud them.
I encourage those who read this blog to post your thoughts. If you don't say them, we won't know what you're thinking. I say that with lots of of FRIDA love, but with total FRIDA seriousness.
Amber Smock
Thanks to a heads up from Emi Koyama of Portland, Oregon, FRIDA has learned that the June edition of the Archives of Pediatric and Adolescent Medicine (APAM) features a letter exchange in their "Pediatric Forum" section, which is basically like letters to the editor but allows for authors of articles to respond to letters. The APAM is published by the AMA but maintains that it is editorially separate from the AMA.
The letter exchange addresses the omission of Ashley X's breast bud removal in the original APAM article on Ashley X in October of 2006 and whether the article was misleading as to the intentions of Ashley's parents and doctors. Here goes:
From the Archives of Pediatric and Adolescent Medicine Volume 161, June 2007, The Pediatric Forum:
Only Half the Story:
The authors of the article “Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma” discuss the ethics of inducing intentional growth stunting to facilitate the care of a child with developmental disabilities. However, according to TIME magazine, these authors are telling only half the story. In their article in the Archives, they discuss administrating high-dose estrogen to fuse the child’s epiphyses and limit growth. However, the TIME article also states that the child’s breast buds were surgically removed to decrease the chance of her developing fibrocystic disease or being uncomfortable with her rehabilitative equipment. She also underwent a hysterectomy to prevent problems in the future related to menses. Thus, it appears as if the child’s family did not merely wish to limit her size to facilitate taking care of her; they also wanted to infantilize her and remove any evidence of puberty and maturation. In this they were aided and abetted by their physicians. The argument that menses would be messy or that she required a prophylactic mastectomy for fibrocystic disease cannot seriously be considered as medical indications for her surgery. If so, why not also do a colostomy and urinary diversion to facilitate nursing care? Why not do a prophylactic appendectomy to prevent potential episodes of appendicitis?
I consider this article, with its emphasis only on the ethics of height reduction, to be very misleading.
Carole L. Marcus, MBBCh
Correspondence: Dr. Marcus, Pulmonary Division, Children’s Hospital of Philadelphia, 5th Floor Wood, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104 (marcus@email.chop.edu).
(***Note from FRIDA: the TIME article Marcus refers to is the January 11 article titled “Pillow Angel Ethics” by Nancy Gibbs. Gibbs published two stories on Ashley X, one from the parents’ standpoint and one from the disability community’s standpoint, essentially bisecting the dialogue and keeping both sides well away from one another.)
***
In Reply
Carole Marcus suggests that because we did not discuss the patient’s breast surgry, our article told only “half the story” and was therefore misleading. We would respectfully disagree. The purpose of reporting this case was to focus attention and debate on the practice of attenuating growth in children with severe developmental disability as a strategy for improving the quality of their lives. There are many aspects of this patient’s medical care that do not directly bear on this issue and were not reported. The hysterectomy was included in the discussion only because it was directly relaed to the complications of estrogen treatment. The medical rationale for hysterectomy is well covered in the article. Breast bud removal was a completely separate request and raised a different set of issues that were unrelated to growth attenuation (as was the incidental appendectomy that was performed).
These several different medical and surgical interventions were each done for different reasons and were considered to be separate requests. Lumping them into a monolithic “Ashley Treatment” is a convention of the parents and the media, not her physicians. The exclusion of breast bud removal fro our discussion should make clear that we do not consider that procedure to be a necessary or routine part of growth attenuation therapy.
Finally, we would also disagree that the motivation of these separate medical and surgical interventions was to “infantilize: the patient and remove any “evidence of puberty and maturation.” It was certainly not a motivation of anyone involved with the decision. The motive was always improving the quality of this child’s life. While this patient will remain short (4’6” [1.4 m] is hardly infant size) and will not develop adult female breasts, she will continue to produce estrogen and mature normally.
Daniel F. Gunther, MD, MA
Douglas S. Diekema, MD, MPH
Correspondence: Dr. Gunther, Division of Pediatric Endocrinology, Children’s Hospital and Regional Medical Center, 4800 Sand Point Way NE, Seattle, WA 98105 (dan.gunther@seattlechildrens.org).
***
What do you all think of this? Please recall that the APAM declined to print a similar letter from FRIDA, stating that they had decided to publish other articles with similar content.
In my personal opinion (not officially speaking for all of FRIDA here, though certainly speaking as a person working to see concrete social change come out of the problems brough up by the Ashley case), while I am encouraged that the APAM deems the Ashley X issue of enough importance to make the editorial decision to publish the above exchange, and that the APAM's publishing of the exchange will continue to push medical professionals to think about the rights of all human beings, I am bothered by some items in the response from Seattle.
Is health care really a simple matter of so many various small requests to fix this and that? Who is really responsible for understanding the whole picture of the care of any person (as opposed to just the care of people who are unable to communicate for themselves)? Are all of the pieces of the puzzle simply not meant to be pulled together for some greater meaning? This is a bit a la carte here.
In addition, let's remember a couple of other things. Seattle Childrens' WAS the subject of an investigation by the state Protection and Advocacy agency on the case of Ashley X. The hospital did fail to make sure that her legal rights were not protected and so the hospital is now supposed to be complying with a settlement agreement regarding sterilization and the rights of people with disabilities.
Furthermore, Seattle Childrens' pediatric bioethics center hosted a one day conference on the Ashley X issue alone, and the issue was also brought up in last month's pediatric bioethics conference. Clearly there is an effort to get the air clear on whether what was done to Ashley was the right thing to do, and to get people thinking about how to make good decisions.
I think that for Ashley's doctors to step back from the fray and essentially say, "Hey, we were only fulfilling some requests," when in reality they have been embroiled in legal and ethical clean-up, is misleading. Granted, this whole exchange may have been written quite some while back given APAM editorial and printing deadlines, but this, to me, is the big deal:
A society that says it's ok to medically alter someone's body to support what is seen as the average accepted lifestyle norm is not a society that respects people.
Some people may find that perspective hurtful and not respectful of folks (like parents and docs) who want to do the best thing possible. I fully accept that people are well-intentioned, but I firmly believe that we can all together give this whole boat of pain a U-turn and instead work towards building the kind of society that is inclusive of the people that we naturally are (not our altered selves).
In my (again, personal) opinion, I think there are effective action steps that we can take towards making things better. We as a society need better cooperation between the medical community and, well, the rest of us. We need better legal protection and oversight. We need more meaningful public dialogue about disability and medicine. We need more MONEY to protect health care and support community choice. We need meetings, forums, appointments, workshops, conferences, bill-writing, media education, disability inclusion in medical education, and most of all we need PEOPLE who are dedicated and willing to work hard to make these things happen. Some folks already are and I applaud them.
I encourage those who read this blog to post your thoughts. If you don't say them, we won't know what you're thinking. I say that with lots of of FRIDA love, but with total FRIDA seriousness.
Amber Smock
Tuesday, July 03, 2007
Ruth over at WheelieCatholic has posted the following about disability community and perspective.
Where is the disability community?
Many people define community as a group of people sharing (or who shared) a common locale, neighborhood or area. Some say community refers to people with the same beliefs and values. Under these definitions, I am a member of many communities, including my town, my church, an alumna, etc.
But I also belong to the disability community, a community that is growing as there is increased awareness of the commonality of many of our experiences. This community also consists of our allies, something I've learned from my online affiliations. The disability community, in my opinion, fits into some conventional definitions of community yet also stretches those definitions in ways that may at first not seem important, but are.
The disability community, in part, is one that arises from the common experiences of living with a disability as well as those who, by choice or affiliation, become allies through experience. For example, yesterday I went out on my scooter wearing my T shirt that I got at the Ski for Light* trip. It reads "Blind People Do It in The Dark". As I went along at my top speed of 4mph, a few summer college students stopped me and asked where I got the T shirt, explaining that they were doing a project on disability. We got some coffee and talked about their project for about a half hour after I discovered from their questions that they really intended to do further research and just needed some context. (I must be a frustrated teacher because I do not like helping students when their research starts and ends with me.) I could sense that these students were potential allies.
We parted ways and I continued to scoot along. A woman with Down syndrome waiting for a bus stopped me and asked if my scooter was new because it was so red and shiny. I told her that it was brand new and she asked how it worked so I demonstrated that and she hugged me and wished me luck with it. I experienced that "click" I generally do when I'm around someone from the disability community and when a nearby person asked me "Do you know her?" I replied "yes." I do now.
I stopped near a park bench for a few minutes. An older man driving a Caddy who was parked at a meter got out of his car, sat on the bench and talked to me while he waited for his wife to come out of a nearby store. He explained that his daughter had MS and was having difficulty accepting that she needed a mobility device. I spoke to him for about fifteen minutes about that situation.
The answer to the question I pose above is that the disability community is all around us, locally and globally. Some days I wish we could take an aerial photo of everyone's town and chart the connectedness between people with disabilities, their allies, friends, families and loved ones. I think, even though some people still experience encountering someone with a disability as an uncomfortable and out of the ordinary experience, this would go a long way toward showing how that is more of a perception issue than a reality.
The truth is, however, that like any community, it often falls short to define it in geographic or spatial terms. In the case of the disability community I've found this to be particularly true and look forward to writing more about that.
*Ski for Light is an organization that offers adaptive skiing for both mobility and visually impaired participants.
Where is the disability community?
Many people define community as a group of people sharing (or who shared) a common locale, neighborhood or area. Some say community refers to people with the same beliefs and values. Under these definitions, I am a member of many communities, including my town, my church, an alumna, etc.
But I also belong to the disability community, a community that is growing as there is increased awareness of the commonality of many of our experiences. This community also consists of our allies, something I've learned from my online affiliations. The disability community, in my opinion, fits into some conventional definitions of community yet also stretches those definitions in ways that may at first not seem important, but are.
The disability community, in part, is one that arises from the common experiences of living with a disability as well as those who, by choice or affiliation, become allies through experience. For example, yesterday I went out on my scooter wearing my T shirt that I got at the Ski for Light* trip. It reads "Blind People Do It in The Dark". As I went along at my top speed of 4mph, a few summer college students stopped me and asked where I got the T shirt, explaining that they were doing a project on disability. We got some coffee and talked about their project for about a half hour after I discovered from their questions that they really intended to do further research and just needed some context. (I must be a frustrated teacher because I do not like helping students when their research starts and ends with me.) I could sense that these students were potential allies.
We parted ways and I continued to scoot along. A woman with Down syndrome waiting for a bus stopped me and asked if my scooter was new because it was so red and shiny. I told her that it was brand new and she asked how it worked so I demonstrated that and she hugged me and wished me luck with it. I experienced that "click" I generally do when I'm around someone from the disability community and when a nearby person asked me "Do you know her?" I replied "yes." I do now.
I stopped near a park bench for a few minutes. An older man driving a Caddy who was parked at a meter got out of his car, sat on the bench and talked to me while he waited for his wife to come out of a nearby store. He explained that his daughter had MS and was having difficulty accepting that she needed a mobility device. I spoke to him for about fifteen minutes about that situation.
The answer to the question I pose above is that the disability community is all around us, locally and globally. Some days I wish we could take an aerial photo of everyone's town and chart the connectedness between people with disabilities, their allies, friends, families and loved ones. I think, even though some people still experience encountering someone with a disability as an uncomfortable and out of the ordinary experience, this would go a long way toward showing how that is more of a perception issue than a reality.
The truth is, however, that like any community, it often falls short to define it in geographic or spatial terms. In the case of the disability community I've found this to be particularly true and look forward to writing more about that.
*Ski for Light is an organization that offers adaptive skiing for both mobility and visually impaired participants.
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