Welcome to Illinois

Not a saint

Posted in Media, Religion (and the lack of it) by Matt at WelcometoIllinois on October 10, 2008

Maybe it’s 31 for 21 fatigue but I’m not really in the mood for posting today. I did, however, just come across this excellent article from The Times that I just added to my ‘further reading’ list on the right.

Written by the paper’s chief sport writer Simon Barnes and published in 2006 in a book to mark the 60th birthday of Mencap it is his account of being a father to two boys, one of which has Down’s syndrome.

It is called “I’m not a saint, just a parent” and it perfectly matches some of my thoughts on a number of issues, particularly as I’ve been reading a number of blogs that take a negative view of the “value” of people with Down’s syndrome (which is probably another reason why I’m feeling flat – but I’ll leave that for another day).

Here’s a couple of excerpts:

“And they’ll say, Simon, well, bloody hell, you know, he’s a saint, the way he looks after that boy. And I thought: I don’t want to be a bloody saint. I want to enjoy my life, not dedicate it. I have no ambitions at all when it comes to sainthood.

“And do you know what? I haven’t become a saint. It’s a complete triumph: I have found no need for canonisation whatsoever. Nor did I have to work hard at resisting sainthood. Unsaintliness came quite naturally.”

“Generalisations about Down’s syndrome are as hopeless as any other generalisation. The one that people good-heartedly make most frequently is “They’re very loving”, a phrase that Cindy and I often quote to each other in the middle of a fit of the roars.

“It’s not a matter of they, it’s a matter of him. I don’t have a child with Down’s syndrome: I am Eddie’s father. There is a huge difference between the two things. The first is almost impossible to deal with, the second is the way I live from day to day. I don’t even think about it much.”

“What is it like to have Down’s syndrome? How terrible is it? Is it terrible at all? It depends, I suppose, on how well loved you are. Like most other conditions of life. Would I want Eddie changed? It’s a silly question but it gets to the heart of the matter. Of course you’d want certain physical things changed: the narrow tubes that lead to breathing problems, for example. But that’s not the same as “changed”, is it? If you are a parent, would you like the essential nature of your child changed? If you were told that pressing a button would turn him into an infant Mozart or Einstein or van Gogh, would you press it? Or would you refuse because you love the person who is there and real, not some hypothetical other?”

“I can’t say I’m glad that Eddie has Down’s syndrome, or that I would wish him to suffer in order to charm me and fill me with giggles. But no, I don’t want his essential nature changed. Good God, what a thought. It would be as much a denial of myself as a denial of my son. What’s the good of him, then? Buggered if I know. The never-disputed terribleness of Down’s syndrome is used as one of the great justifications for abortion: abortion has to exist so that we don’t people the world with monsters. I am not here to talk about abortion — but I am here to tell you that Down’s syndrome is not an insupportable horror for either the sufferer or the parents. I’ll go further: human beings are not better off without Down’s syndrome.”

Advertisements

2 Responses

Subscribe to comments with RSS.

  1. starrlife said, on October 10, 2008 at 1:26 pm

    Great post! I’ve got to grab the idea for my 31 for 21! Thanks.

  2. […] different perspective I mentioned the other day that I had spent some time reading a number of blogs that take a negative view Down’s syndrome […]


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: