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The burden of Down’s syndrome

Posted in Attitudes to disability, Screening by Matt at WelcometoIllinois on September 28, 2009

Anyone who reads a lot of Down’s syndrome-related news and blogs has probably already read the recent posts by “Skeptical OB” Dr. Amy Tuteur in which she asked whether we should lament the potential disappearance of Down’s syndrome and questioned whether counselling for pre-natal diagnosis of Down’s syndrome is inadequate.

Plenty of people have responded to her questions in the comments, so I won’t go over all that again, but I did want to address her characterisation of raising a child with Down’s syndrome as a burden. In particular she referred to “the lifelong burden of caring for a disabled child” and that:

“Raising a child with a serious genetic anomaly is a major burden, one that never ends and one that often gets harder as the years go by.”

Is raising a child with disabilities a burden? Undoubtedly it is difficult, and for some that difficulty can become a burden. But since when was raising any child easy?

What is striking about Dr. Tuteur’s attitude is the manner in which she has responded to comments from parents that dispute her view, however. She has completely dismissed any suggestion that raising a child with Down’s syndrome might not be seen as a burden and maintained that any parent who denies that view is the exception, rather than the rule.

Is she correct? Perhaps. I can only speak for our own experience. But then that is better than no experience and the assumption that your view is shared by the majority.

It occurred to me while reading Dr. Tuteur’s first post that perhaps she was projecting her own views about disability as a societal burden onto others.

That theory gathered further momentum given her follow-up post, in which she denied that counselling offered to parents receiving a pre-natal diagnosis of Down’s syndrome is inadequate. In this post she stated that the concern of parents of children with Down’s syndrome “is hardly selfless” and pointed out that there are fears that as the population of people with Down’s syndrome declines, so will the institutional support and funds for medical research.

The suggestion that parents of children are acting out of selfishness is the most offensive thing she has written. Of course they want to improve services for their children. What parent doesn’t? However, improving support and research funding is a means to an end, not an end in itself. The end result is a better life for your child. What parent wouldn’t want that?

Clearly Dr. Tuteur is concerned about funding being directed to Down’s syndrome that might otherwise be spent elsewhere.

I previously noted that in much of the discussion about Down’s syndrome screening there is an assumption that reducing the number of children with Down’s syndrome is beneficial to society but that very few people are prepared to address the reason why directly: which is that it reduces the amount of money society needs to spend to care for and support them.

If you believe that Down’s syndrome is a burden to society at least be prepared to come out and say so rather than projecting your opinions on to others.

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4 Responses

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  1. Lance Boldt said, on October 1, 2009 at 5:40 pm

    In my 17 years in the community of parents of children with Down syndrome, I’ve only encountered a very few that felt Down syndrome was a burden that wasn’t completely offset by the joys.

    These were the profoundly selfish. Fathers that abandoned their families (using Down syndrome as an excuse) and one mother who resented all of her children as burdens.

    If feel Dr. Tuteur’s remarks could be translated to say “A child with Down Syndrome would negatively affect my lifestyle. I don’t want one – something must be wrong with you if you want yours. I don’t have one – why should society use my tax dollars to benefit yours.”

    Here are some of my thoughts on life with Down syndrome (two sons, one of whom was adopted):

    http://tinyurl.com/secretjourney

  2. starrlife said, on October 4, 2009 at 11:42 am

    It was silly and rather intellectually challenged of her I have to say! My take on her is that she likes to be provocative for her little piece of bloggy fame! I see those people all over the internet.

  3. Nick McGivney said, on October 22, 2009 at 5:09 pm

    The danger, as always with the half-baked and apparently intelligent, is that some other halfwit will give them a soapbox from which they can spread idiocy to a whole phalanx of idiotness that’s just out there waiting to be miseducated. Dr Amy Halfbake here seems fairly typical of the type. Last Christmas I had the wonderful opportunity to write about her spiritual sister, Minette Marin, who only has a soapbox the size of The Times of London to embarrass herself from. But still, like attracts like, and sure enough her commenters always include the righteous ‘Well said, Marin, needed saying’ type of insufferable nonsense.
    I wrote about it here and I must say, I thoroughly recommend blasting idiots from the clock tower of a blog as a wonderful therapy: http://downsdad.wordpress.com/2008/12/08/another-idiot-with-a-column/

  4. paul said, on July 13, 2011 at 4:25 pm

    Unfortuanetly, there are many loving parents who have children with diabilities who chose to give their child a fish everytime they are hungry instead of teaching them to fish. I have a sibling with downs and my parents have worked every day of their lives to help her learn and achieve. They live by the motto of a doctor (forget the name) who says to treat the symtom, not the downs syndrome, that is socaily and medically. She takes thyroid medication because of her thyroid irregularities, although caused by DS it is not ignored because of that. If she is in the mood to watch television for 4 hours straight my parents do not simply allow her because of her condition, they intervene because a child ought not to sit infront of a TV for that long. Any child can become a burden or a free loader when parents, guardians, or loved ones fail to implement values and a commitment to better themselves in life; not just those with a disability.


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