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The burden of Down’s syndrome

Posted Sep 28 2009 10:56pm

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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