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A different perspective

Posted in Attitudes to disability, Religion (and the lack of it), Termination by Matt at WelcometoIllinois on October 11, 2008

I mentioned the other day that I had spent some time reading a number of blogs that take a negative view Down’s syndrome and parents’ decision to continue with a pregnancy after a prenatal diagnosis.

Some might question why I would want to spend time on such blogs, but I believe it is important to understand the opinions of others even – and perhaps especially – if they are different to your own.

It all started with this comment on my post about Sarah Palin’s selection as VP candidate, which led me to this post on Rationalmind.net entitled “Christian fundamentalists put freaks on parade”.

It would easy to be offended by the post’s description of people with Down’s syndrome, but like Nicholas Provenzo at the Center for Advancement of American Capitalism, the writer of Rationalmind appears to be more anti-religion than anti-down’s syndrome.

Provenzo prompted outrage in some quarters with his assertion that “it is crucial to reaffirm the morality of aborting a fetus diagnosed with Down syndrome.”

Provenzo links to Diana Hsieh’s “The Worship of Retardation” to support his view that people who choose to continue with the pregnancy of a disabled child are therefore being selfish, rather than selfless.

Hseih is pessimistic about the opportunities for people with Down’s syndrome and objects to the description of children with Down’s syndrome by Christians as “special children” with a hotline to God.

The latter point is actually a concern I share, having objected to the use of the term “special” on linguistic grounds. I also mentioned “the deification of Trig Palin” in another post.

What these bloggers and others appear to overlook, however, is the fact that not all parents decide to continue with the pregnancy of a disabled child based on their religious beliefs. For example, The Aesthetic Capitalist states:

“If a woman chooses to ‘keep her baby’ that is her right to do so; but, the only reason I can think for doing such a terrible thing is to choose to bear some terrible duty — to make your life about suffering; to choose to tie yourself (and society) to supporting this child for 40-50 years.”

I’m sure I am not alone in finding it somewhat sad that the author cannot conceive of another reason for continuing with the pregnancy of a disabled child.

The Aesthetic Capitalist assumes that the small proportion of people who decide not to terminate the pregnancy of a child with Down’s syndrome do so based on religious beliefs:

“Where I think the evil lies is in those 10 to 20% of parents who think that God had deemed them worthy or better than the rest of world; that they are somehow stronger and more capable and thus must be willing to bear the blessing of suffering through life with a child with Down’s Syndrome.”

The author has in fact started a new blog to continue his thoughts on the subject of Down’s syndrome. Entitled “End Down Syndrome” it aims to do just that by persuading people to terminate fetuses with Down’s syndrome by arguing that “joy, not suffering, should be the highest, most reverent goal of our lives.”

The author does not explain why he feels the need to “end Down”s syndrome” although back at The Aesthetic Capitalist the author adds:

“The work, suffering, and mental anguish that a healthy child brings is outweighed for the most part by the joys of watching and guiding him to adulthood. Without these joys and experiences, there is no reward or justification for late nights, constant hospital visits, stress, worrying, bills, diaper changes, the loss of personal privacy, and the freedom to do other things you truly love.”

It is interesting that the author mentions love here. It takes me back to The Times article I mentioned the other day. In it Simon Barnes noted that “You don’t go into parenthood to make sure that the benefits outweigh the deficits: you go into it out of — brace yourself but no other word will do — love.”

He added “Parenthood is not about perfection, it’s much more interesting than that: it’s about making the best of what you have. Define best, then? Do that for yourself, but I’ll give you a clue: if you think it’s all about A levels, you’re on the wrong track.”

There is joy in seeing your child learn and grow. One of the objections that the bloggers cited above appear to have with religious parents and carers is that they take an excessive pride in the growth of their children with Down’s syndrome and the role that their religion has in their lives.

There may be something in that, but it doesn’t mean that all parents who decide to continue with the pregnancy of a child with Down’s syndrome after a prenatal diagnosis are motivated by religion.

I previously mentioned this article on Health.com which indicated to me that humanity (manifested in faith of religious believers and morality in non-believers) is the primary motivator.

Provenzo writes that “it is completely legitimate for a woman to look at the circumstances of her life and decide that having a child with Down syndrome (or any child for that matter) is not an obligation that she can accept”.

I agree, but believe that this perspective overlooks the fact that it is also legitimate for parents to decide that they have an obligation to love and care for their offspring whatever their state of health. Provenzo actually provides a explanation for this.

“A parent has a moral obligation to provide for his or her children until these children are equipped to provide for themselves,” he writes.

I assume Provenzo would not consider that this moral obligation extends to an unborn child. I think that’s down to the individual to decide and I would respect their right to do so. But I will say this – until you are faced with the reality of deciding whether to keep or kill your own unborn child, you cannot truly know your own feelings about this subject.

Deciding how to respond to the news that our son had Down’s syndrome is the most difficult decision I have ever made. There were no simple answers for us, and I would respect the right of someone to continue with their pregnancy on religious (or any other) grounds just as I would respect the right of someone to terminate their pregnancy on philosophical (or any other) grounds.

What I object to, however, is the disrespect shown by people who assume to know what someone’s thought process was or assume to know better than them what decision they should have taken.

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18 Responses

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  1. raybear said, on October 11, 2008 at 7:47 am

    First of all, I applaud your willingness to understand different opinion. I also agree with you in that people shouldn’t judge without knowing. And definitely no disrespect should be shown for a decision with which they cannot possibly understand.
    I was faced with terminating my pregnancy a few months ago, and it is an extremely difficult decision. You’re right, there are NO simple answers. There are only the long and hard roads.

  2. Kristy said, on October 11, 2008 at 2:52 pm

    I stumbled onto your blog and this is about the third time for me. I like your perspective on things and your writing style. I am going to add your blog to my blog list for Down syndrome. You are welcome to do the same with mine.

    It makes me sad that someone like this writer can not see past the nose on the end of his face! I imagine he has a very sad, lonely life with that kind of perspective. I will pass this info along and perhaps he can get some education on what Down syndrome really is.

    Thanks for your great articles!
    Kristy
    http://www.mosaicmoments.today.com
    http://www.nonprofit101.today.com

  3. welcometoillinois said, on October 11, 2008 at 7:50 pm

    Thanks Kristy, appreciate you taking the time to read and comment. You just made the list.

  4. welcometoillinois said, on October 11, 2008 at 7:55 pm

    Thanks raybear. We found we knew we had made the right decision because as soon as we voiced it out loud it felt like the weight of the world had lifted from our shoulders. We knew it would be hard but we knew we could do it. I hope you have experienced a similar comfort.

  5. Rickismom said, on October 11, 2008 at 9:32 pm

    I would like to add that I came across this blog a few weeks ago (was on Google digest for Down syndrome. I wrote a reply to them , which they didn’t post. And it was fairly calm post, similar to what I wrote here :

    http://beneaththewings.blogspot.com/2008/09/perhaps-its-infectious_7780.html

    (except of course for the first paragraph)
    Unfortunately, it all boils down to the G-d almighty DOLLAR

    When Ricki learned about the Nazis in school, I told her that they would have killed someone like her on two counts: Jewish and “special needs”. Hate to think that there are people who don’t believe that she has a right to exist., or worse yet, that she has an obligation to die.

  6. AC said, on October 11, 2008 at 10:43 pm

    welcometoillinois,

    I want to commend you on taking the amount of time and effort required to write your post. Most bloggers/people do not have the focus, patience or skill you have shown. And almost no one takes the time to research and dissect an opponent’s position like you have for this post.

    There are many things I want to respond to, but I do not want to give even the hint of starting some sort of flame war. This is of course why I did not post or respond to Rickismom’s comment on my blog. This is a sensitive issue, and there are still a number of issues I need to work out. For the record, I have saved Rickismom’s comment and have referred back to it several times while thinking on this issue.

    Yes, I am working out a few of my issues out in public forum, but there is a certain type of person I most definitely want to condemn — the type of person who thinks they are a better person for choosing a life of suffering. One of the reasons I decided to start writing on this topic before I worked out every angle was because the public spectacle a number of people and groups were making. Again this week, there was a full page spread on a girl who has Down Syndrome in my local paper.

    I am only somewhat acquainted with Mr. Provenzo, and I have never meet Diana Hsieh, so I cannot speak for them. But I most certainly understand there are exceptions, or should I say a tremendous amount that has to be considered when faced with decisions involving abortion, birth defects, and a lifetime of mental and physical challenges. Every time I sit down to write on this subject, I am practically overwhelmed with the amount responsibility I feel in writing on this subject. As you can see on my blog I have made just three short posts in the five weeks. I can promise it is not for lack of effort.

    welcometoillinois, I would like to hear from you from time to time if you are interested. I truly appreciate you taking the time today to share some of your history. And thank you again for showing me and the your readers a shining standard for how to properly approach a controversial intellectual issue. I will hopefully finish up a very favorable post about your post today — although you will most likely disagree with my final point.

  7. Love Down syndrome said, on October 12, 2008 at 3:19 am

    I can’t believe how nonchalantly you all talk about life. There really shouldn’t be a lot of soul searching going on here. You have no right to take innocent life—period. It is so simple! I “understand” all of the different opinions, that is the disturbing part.

    Love requires sacrifice—sacrifice falls within the definition of love! Having someone in your life with Down syndrome teaches you all about love. To get rid of those with Down syndrome would rob the world of a whole lot of love. They are teachers of our souls!

  8. jonashpdx said, on October 12, 2008 at 5:06 am

    Sir Welcome, I give you serious props for your well-measured and reasoned response to someone who basically is saying that your child should never have been born and serves no purpose in his narrow vision of what the world should be like.

    me, I kind of just want to find him and kick him in the balls. anyone who espouses — guh, I can’t even begin to try and reason with someone who so obviously has things ass backwards, and I say that as someone with no religious leanings to speak of whatsoever.

    but it’s a slippery eugenics slope there, you know? who’s going to be next, people without 20/20 vision? ’cause that’s a pretty serious and life-affecting defect there as well. and really, isn’t it more immoral to say that someone should be “terminated” to use the US euphemism based on the accident of their genetic material and then decide what their “value” will be in only strict numeric terms than to simply make a decision about abortion based on the complete unknown?

    As to AC’s remark about not wanting to start a “flame war” but also deeming anyone who has and/or chooses to have a child with DS a monster — that’s the word used at his site, “something monstrous” — with only suffering in their future… awesome. you get to tell me in anonymous internet land that my son’s life is worth nothing in whatever way you’ve calculated that but as a parent, I’m supposed to take it because you’ve given it a great amount of thought.

    I guess I find the whole thing pretty sad as well.

  9. welcometoillinois said, on October 12, 2008 at 7:14 am

    Thanks all for your comments, but especially AC for reaching out. I am pleased to hear you are finding it difficult to write on your blog, not because I don’t think you should write it (how ever much I disagree with you) but because it demonstrates how difficult any decision related to these issues is. I am also pleased to hear you are referring to Rickismom’s comment in assembling you thoughts.

    I look forward to reading your response and understanding your motivations. While I understand the problem with the deification of Down’s syndrome sufferers (covered in the post above) I do not believe you have explained why you should want to “end Down syndrome”.

    For example, you state above “Again this week, there was a full page spread on a girl who has Down Syndrome in my local paper.” What is wrong with that exactly? Do you have a problem with the nature of the article itself, or the fact that any article should be written about people with Down’s syndrome?

  10. AC said, on October 12, 2008 at 8:01 pm

    welcometoillinois,

    I just published a post on my blog that I think addresses yout question about why I think Down Syndrome is something that needs to be ended.

    http://enddownsyndrome.blogspot.com/2008/10/why-end-down-syndrome.html

    I hope it also help maintains the level of conversation we have started.

    I look forward to your response.

  11. Love Down syndrome said, on October 12, 2008 at 11:40 pm

    You, AC, are lacking specifically what those with Down syndrome provide for our world: a heart, compassion, an ability to love people simply for who they are.

    Putting religion aside, if we could fix all the economic problems of our country, but be deficient in compassion we are good for nothing.

    You are a sick person. There is no simpler, more precise way to put it. Your sickness is that you are empty and you will never find true happiness because you do not have a clue where to find it.

    90% abort because they are given a distorted reality of Down syndrome. I saw the babies aborted on the unit I worked on. I never did them, I sadly was witness to them. It was cruel, inhumane and heartless.

    You and Hitler have much in common. I thought that we learned, looking back on his insanity. I guess some did. Someday, we will look back on our nation and see how our selfishness has destroyed a population of people that had so much to offer and who deserved all the respect and dignity of every human person.

  12. Love Down syndrome said, on October 13, 2008 at 2:05 am

    Just wondering–if I find you to spoil my joy, can I get rid of you?

    Seems with your view of the purpose of life, that would be okay.

    Causing harm to you would be against my beliefs, so I wouldn’t do that of course. But just where do you draw the line?

  13. Anees Mohammad said, on October 13, 2008 at 2:42 am

    I feel more remorseful for the author whose mind is absent from the realities of this world. Author failed to recognize that there is no such thing as a perfect child in this world. Furthermore, nature does not provide any guarantees that child with no DS or no other birth defects will remain healthy or will not have permanent health issues after s/he is born. What you do in such cases where child and/or parents sufferings began few years after the birth? Finally, it is apparent that author has not experience the joy, happiness and satisfaction of raising a Down Child.

  14. Anees Mohammad said, on October 13, 2008 at 2:43 am

    Though the article is very disturbing especially to parents such as myself who has a DS child, I feel more remorseful for the author whose mind is absent from the realities of this world. Author failed to recognize that there is no such thing as a perfect child in this world. Furthermore, nature does not provide any guarantees that child with no DS or no other birth defects will remain healthy or will not have permanent health issues after s/he is born. Finally, it is apparent that author has not experience the joy, happiness and satisfaction of raising a Down Child. I doubt the author claim that 85% and 92% parents are already choosing to abort fetuses which have Down syndrome.

  15. welcometoillinois said, on October 13, 2008 at 2:28 pm

    AC, I’m really busy right now with one thing and another https://welcometoillinois.wordpress.com/2008/10/13/first-day-back-at-work/ and I want to give a considered response. I’ll publish a comment on your post soon.

  16. AC said, on October 14, 2008 at 12:14 am

    welcome.

    Thank you for the note. I did read about your trip to the accident and emergency.

    I was very happy to read that your son is improving.

    As for the delay, your readers and the “community” are keeping me quite busy. I just wish the threats and prayers for my dimise would stop.

  17. […] has been interesting to see the response. There has certainly been a lot of interest, with A different perspective quickly becoming the third most popular post on this blog. Only posts about Tropic Thunder and […]

  18. […] 21, 2009 · Leave a Comment Long-term readers (hi Mum!) may remember an exchange of views played out on this blog last year with a blogger who set up a blog called End Down […]


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