Post by wrblack on Jul 22, 2005 13:14:47 GMT -5
ing and abortion -- long.
There have been a few somewhat heated and contentious threads going over on the Down-syn list lately. We had a somewhat milder, I hope, discussion not long ago. And I, of course, was thinking somewhat of that when I posted the following just now:
<<< We've just had a few threads, here and elsewhere, on topics related to Down syndrome, prenatal testing, and abortion. Some of those discussions became a little heated, as discussion on those topics often do. So, I probably shouldn't start up anything new. And I really hope I'm not just opening up a new avenue for conflict, contention, division, hurt feelings, and angry words. But there were at least a couple of aspects of those discussions where I wished we had had a little more light and quite a bit less heat.
One of those threads started off from what I thought was a good question, not an easy question to answer, but a very good question. I may be oversimplifying, but as I understood it, the question was what are we supposed to do, and how are we supposed to feel, when someone says, well, yes, your kids are wonderful and I admire and respect them, wouldn't want to devalue them in any way, but your path, course of life, decision, is not ours, we got a prenatal diagnosis of Down syndrome, and we are going to terminate the pregnancy? Is it possible, and if so, how is it possible, that someone could choose elective termination of a pregnancy, abortion, because of Down syndrome without at least a strong implication that the lives of people with Down syndrome are somehow less valuable, less worthy, less justifiable than lives of individuals with a more usual arrangement of chromosomes?
That's one of the two aspects that I thought needed some light, as best I can frame in. And I would put it under the rubric of advocating for our children's lives. How should we be responsibly and reasonably advocating for our children's lives when we see so much effort and attention given to providing prospective parents the option of not having kids like ours?
The other aspect, which I also don't think I can answer and may not be able to shed much light on, is educating. I wrote to someone that one of the things that bothered me most in this whole Down syndrome-abortion scene was, young or not so young couples in a very stressful situation, lots of pressure and time limits, and making a life and death decision based on faulty information, or incomplete data, misconceptions, and wrong thinking. Then again, maybe some of them are just rationalizing and trying to justify, and coping as best they can. But, hey, I'm just the father of a kid with Down syndrome, never set out to be a perinatologist or genetics counselor. What business have I got, and what interest should I have, and do I have any responsibility, in seeing that prospective parents are given good and appropriate information about Down syndrome, and their options?
Well, I'm not an expert on prenatal testing and diagnoses, though I think I know quite a bit more about such matters now than I did six years ago. Pretty much the same holds true of Down syndrome. Have now read a few books about Down syndrome and have visited with some doctors, teachers, and therapists, who I hope know quite a bit about Down syndrome. But most of my knowledge, perspective, and appreciation of this genetic condition comes from having the honor and privilege, and good fortune, of being the one who gets to pick up a little guy with Down syndrome and carry him downstairs every morning. And I believe I also have a responsibility to take an interest in all other aspects of his care and well being. And I think those things do give me some insight and knowledge that could be valuable. And I believe I have a responsibility to watch out for his interests in all areas. So, not only as a father of a kid with Down syndrome but just as an ordinary citizen, member of society, and consumer of health services, I believe I have an interest in seeing knowledgeable, sensitive, caring physicians doing the best they can to present accurate and balanced information, and in the right doses and at the right time, to their patients.
So, I think the answer to the questions surrounding this second aspect of educating the public regarding prenatal testing for Down syndrome is that, yes, I do have some business meddling in those matters. But I personally think I should meddle cautiously and responsibly.
I also hold the opinion, but it's just that, my own personal opinion, that some people can choose to terminate a pregnancy due to a prenatal diagnosis of Down syndrome but can still acknowledge and respect all the rights of my son as a human being. I sure hope that opinion is right about most of that, proximately correct.
The National Down Syndrome Society has taken positions on these matters and issued statements. I don't always go along with everything the NDSS says. But here I rather admire and respect them for maintaining some distance and broadness. I think what they have said is good, and it's probably wise that they didn't say a whole lot more.
www.ndss.org/content.cfm?fuseaction=NDSS.article&article=697 <<NDSS Position Statement on Abortion
Published: April 19, 2004
The National Down Syndrome Society is committed to providing accurate and timely information to our constituents, which include parents and expectant parents, on all topics related to Down syndrome and the potential of individuals with this genetic condition. The National Down Syndrome Society does not take a position on abortion, recognizing that abortion is legal in the United States and that our constituents represent diverse backgrounds and philosophies. >>
www.ndss.org/content.cfm?fuseaction=NDSS.article&article=700 <<NDSS Position Statement on Prenatal Testing Published: April 19, 2004
The National Down Syndrome Society believes all expectant parents should be informed as to the purpose of the various screening and diagnostic prenatal tests and given information on the risks, limitations and expense of the tests, the manner in which these tests will be performed, and when during the gestational period the results will be available.
Prenatal testing for Down syndrome should be made available to any pregnant woman who wishes to receive the tests, regardless of the woman's age, reproductive history or disability status. Knowing in advance either the risk or diagnosis of Down syndrome can help parents educate, inform and prepare themselves for all issues regarding this genetic condition.
However, the decision whether to undergo prenatal testing must be solely that of the pregnant woman. All forms of prenatal testing for Down syndrome should remain strictly confidential and voluntary.
All women, regardless of age, reproductive history or disability status, must be given the absolute right to continue a pregnancy after prenatal diagnosis. They should never be subjected to unwanted pressure from health care professionals or others concerning this decision.
Above all, the National Down Syndrome Society strongly believes that policymakers, health care professionals and society as a whole have a responsibility to do everything possible to ensure that people with Down syndrome have the opportunity to lead productive, independent lives and realize their life aspirations. >>
I can live with those statements, and, hopefully, within the guidelines and tone of those statements. And I would hope most, if not all, other parents of little stinkers with an extra 21st chromosome could do so also.
With apologies to Pam W, who just reminded us, and to Bill McG, who has asked we refrain from debating abortion here, but I had started composing this before I saw Pam's post and was too enamored of my own words to refrain from hitting the send button, Bob >>>
My apologies for the questionable netiquette of copying one of my own posts from one board to another. And I do hope I'm not opening a big can of worms again, and just creating another thread for Michelle Mc or Connie to have to lock or delete. Oh, but if need to lock or delete, go right ahead, won't hurt my feelings. -- Just sharing, Bob
There have been a few somewhat heated and contentious threads going over on the Down-syn list lately. We had a somewhat milder, I hope, discussion not long ago. And I, of course, was thinking somewhat of that when I posted the following just now:
<<< We've just had a few threads, here and elsewhere, on topics related to Down syndrome, prenatal testing, and abortion. Some of those discussions became a little heated, as discussion on those topics often do. So, I probably shouldn't start up anything new. And I really hope I'm not just opening up a new avenue for conflict, contention, division, hurt feelings, and angry words. But there were at least a couple of aspects of those discussions where I wished we had had a little more light and quite a bit less heat.
One of those threads started off from what I thought was a good question, not an easy question to answer, but a very good question. I may be oversimplifying, but as I understood it, the question was what are we supposed to do, and how are we supposed to feel, when someone says, well, yes, your kids are wonderful and I admire and respect them, wouldn't want to devalue them in any way, but your path, course of life, decision, is not ours, we got a prenatal diagnosis of Down syndrome, and we are going to terminate the pregnancy? Is it possible, and if so, how is it possible, that someone could choose elective termination of a pregnancy, abortion, because of Down syndrome without at least a strong implication that the lives of people with Down syndrome are somehow less valuable, less worthy, less justifiable than lives of individuals with a more usual arrangement of chromosomes?
That's one of the two aspects that I thought needed some light, as best I can frame in. And I would put it under the rubric of advocating for our children's lives. How should we be responsibly and reasonably advocating for our children's lives when we see so much effort and attention given to providing prospective parents the option of not having kids like ours?
The other aspect, which I also don't think I can answer and may not be able to shed much light on, is educating. I wrote to someone that one of the things that bothered me most in this whole Down syndrome-abortion scene was, young or not so young couples in a very stressful situation, lots of pressure and time limits, and making a life and death decision based on faulty information, or incomplete data, misconceptions, and wrong thinking. Then again, maybe some of them are just rationalizing and trying to justify, and coping as best they can. But, hey, I'm just the father of a kid with Down syndrome, never set out to be a perinatologist or genetics counselor. What business have I got, and what interest should I have, and do I have any responsibility, in seeing that prospective parents are given good and appropriate information about Down syndrome, and their options?
Well, I'm not an expert on prenatal testing and diagnoses, though I think I know quite a bit more about such matters now than I did six years ago. Pretty much the same holds true of Down syndrome. Have now read a few books about Down syndrome and have visited with some doctors, teachers, and therapists, who I hope know quite a bit about Down syndrome. But most of my knowledge, perspective, and appreciation of this genetic condition comes from having the honor and privilege, and good fortune, of being the one who gets to pick up a little guy with Down syndrome and carry him downstairs every morning. And I believe I also have a responsibility to take an interest in all other aspects of his care and well being. And I think those things do give me some insight and knowledge that could be valuable. And I believe I have a responsibility to watch out for his interests in all areas. So, not only as a father of a kid with Down syndrome but just as an ordinary citizen, member of society, and consumer of health services, I believe I have an interest in seeing knowledgeable, sensitive, caring physicians doing the best they can to present accurate and balanced information, and in the right doses and at the right time, to their patients.
So, I think the answer to the questions surrounding this second aspect of educating the public regarding prenatal testing for Down syndrome is that, yes, I do have some business meddling in those matters. But I personally think I should meddle cautiously and responsibly.
I also hold the opinion, but it's just that, my own personal opinion, that some people can choose to terminate a pregnancy due to a prenatal diagnosis of Down syndrome but can still acknowledge and respect all the rights of my son as a human being. I sure hope that opinion is right about most of that, proximately correct.
The National Down Syndrome Society has taken positions on these matters and issued statements. I don't always go along with everything the NDSS says. But here I rather admire and respect them for maintaining some distance and broadness. I think what they have said is good, and it's probably wise that they didn't say a whole lot more.
www.ndss.org/content.cfm?fuseaction=NDSS.article&article=697 <<NDSS Position Statement on Abortion
Published: April 19, 2004
The National Down Syndrome Society is committed to providing accurate and timely information to our constituents, which include parents and expectant parents, on all topics related to Down syndrome and the potential of individuals with this genetic condition. The National Down Syndrome Society does not take a position on abortion, recognizing that abortion is legal in the United States and that our constituents represent diverse backgrounds and philosophies. >>
www.ndss.org/content.cfm?fuseaction=NDSS.article&article=700 <<NDSS Position Statement on Prenatal Testing Published: April 19, 2004
The National Down Syndrome Society believes all expectant parents should be informed as to the purpose of the various screening and diagnostic prenatal tests and given information on the risks, limitations and expense of the tests, the manner in which these tests will be performed, and when during the gestational period the results will be available.
Prenatal testing for Down syndrome should be made available to any pregnant woman who wishes to receive the tests, regardless of the woman's age, reproductive history or disability status. Knowing in advance either the risk or diagnosis of Down syndrome can help parents educate, inform and prepare themselves for all issues regarding this genetic condition.
However, the decision whether to undergo prenatal testing must be solely that of the pregnant woman. All forms of prenatal testing for Down syndrome should remain strictly confidential and voluntary.
All women, regardless of age, reproductive history or disability status, must be given the absolute right to continue a pregnancy after prenatal diagnosis. They should never be subjected to unwanted pressure from health care professionals or others concerning this decision.
Above all, the National Down Syndrome Society strongly believes that policymakers, health care professionals and society as a whole have a responsibility to do everything possible to ensure that people with Down syndrome have the opportunity to lead productive, independent lives and realize their life aspirations. >>
I can live with those statements, and, hopefully, within the guidelines and tone of those statements. And I would hope most, if not all, other parents of little stinkers with an extra 21st chromosome could do so also.
With apologies to Pam W, who just reminded us, and to Bill McG, who has asked we refrain from debating abortion here, but I had started composing this before I saw Pam's post and was too enamored of my own words to refrain from hitting the send button, Bob >>>
My apologies for the questionable netiquette of copying one of my own posts from one board to another. And I do hope I'm not opening a big can of worms again, and just creating another thread for Michelle Mc or Connie to have to lock or delete. Oh, but if need to lock or delete, go right ahead, won't hurt my feelings. -- Just sharing, Bob