Welcome to Illinois

On visibility and acceptance

Posted in Attitudes to disability, Screening, Statistics, Termination by Matt at WelcometoIllinois on June 27, 2008

This week two excellent articles were published in the US press. The first one, about efforts to increase the acceptance of people with disabilities in Russia, was in the Washington Post. The second, about attitudes to disability in the US, appeared in the Wall Street Journal.

The Washington Post wrote:

“People with disabilities are literally almost invisible in Russia, isolated in homes, special schools and sheltered workshops. It is a rare event to see a person in a wheelchair or a blind person or someone with Down syndrome out and about on the streets of a Russian city.”

This is something I have become aware of in the UK since our baby was diagnosed. According to the Down Syndrome Association’s website, there are 60,000 people with Down’s syndrome living in the UK. Where are they all? Since our baby was diagnosed with Down’s I have had a heightened awareness of the syndrome but I think I have only seen three or four people in that three months.

I have also become more conscious of the fact that as a society we find it hard to accept disability (and I include myself in this). “As our scientific powers to eliminate disability grow, our acceptance of disability wanes,” states the WSJ report.

“To cite just one example, consider the rapid near-disappearance of people with Down Syndrome. Between 80% and 90% of women who find out they are carrying a child with the chromosomal abnormality (which can be tested using amniocentesis) choose to abort,” it adds.

It is staggering to think how many more people with Down’s syndrome there would be in the world were it not for tests such as amniocentesis. How much better would our acceptance of people with Down’s be if that were the case? This is one of the reasons why I have reservations with the fact that testing is so widely encouraged.

Another reason, as I stated earlier this week, revolves around the lack of support for would-be parents faced with the results of those tests (which I believe must play a part in the high termination rate). The WSJ report suggests that the US is taking a lead on this:

“the Prenatally and Postnatally Diagnosed Conditions Awareness Act calls for the creation of a telephone hotline and peer-support programs for parents, a national registry for families willing to adopt children with Down Syndrome, as well as ‘up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes’.”

It would be nice if we could follow suit in the UK.

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  1. […] a religious issue The Wall Street Journal article I mentioned the other day also raises an issue that I should probably get out of the way early; namely: there […]

  2. Selective thinking « Welcome to Illinois said, on November 28, 2008 at 2:13 pm

    […] minds as to the links between chromosome 16 and autism. On the one hand I have previously voiced my unease regarding encouragement for more testing. On the other hand, the more screening tests are created, […]

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