What’s so ‘Down’ About Down Syndrome?

Efforts to empower disabled and differently abled persons and to make society more inclusive of them are being undermined by the alarmingly high and disproportionate number of disability-selective abortions taking place in Australia and around the world.

93% of women in Western Australia who receive a prenatal diagnostic of Down syndrome choose to abort their child, according to a 2015 study on the impact of prenatal screening on Down syndrome births and abortions in Western Australia. While these figures may be alarming, they are unfortunately not out of keeping with other nations such as the U.S.A, where 67% of unborn babies with a prenatal diagnosis of Down syndrome are aborted and Iceland, where the number is nearly 100%.

This discrimination against people with Down syndrome is tragic, especially when one considers the findings of a 2011 study in the American Journal of Medical Genetics, in which 99% of individuals with Down syndrome reported being happy with their lives, 97% responded that they liked who they are and 96% liked the way they looked. Along with this, almost 99% of participants indicated that they loved their family. These statistics do not surprise me. Having worked with individuals with Down syndrome for several years in my role as a disability support worker, I have found that overall; they have tended to be the most joyful individuals I have met.

Sadly, this joyful and loving nature is often not communicated to mothers who receive a prenatal diagnosis of Down syndrome for their unborn child. Often instead they are provided with inaccurate information which overstates the challenges of raising a child with Down syndrome and paints life with Down syndrome as painful and not worth living. Several publications in recent years have revealed the experiences of parents of children with Down syndrome, who, upon receiving this prenatal diagnosis, had pressure placed on them to abort their children by medical professionals.

This perception that individuals with Down syndrome are a burden or that their quality of life is somehow lessened is deeply saddening, particularly in the context of the exceedingly high number of people with Down syndrome who report being completely happy with their lives. Do we as a society think that we are somehow better suited to judge the quality of life of these individuals than they themselves? At what point do others get to say what lives are and are not worth living?

If we are going to claim to be an inclusive society then this inclusivity needs to take place at all stages of life and include all people.

References

Maxwell, F. Bower, C. O’Leary, P. (2015). Impact of prenatal screening and diagnostic testing on trends in Down syndrome births and terminations in Western Australia 1980 to 2013. Prenatal Diagnosis (35), pp. 1-7. Retrieved from URL – https://1v1d1e1lmiki1lgcvx32p49h8fe-wpengine.netdna-ssl.com/wp-content/uploads/2017/08/Impact-of-prenatal-screening.pdf

Skotko, B. G. Levine, S. P. and Goldstein, R. (2011). Self‐perceptions from people with Down syndrome. Am. J. Med. Genet (155), pp. 2360-2369. doi:10.1002/ajmg.a.34235

Reingold, R.B. Gostin, L.O. (2018). Banning Abortion in Cases of Down Syndrome: Important Lessons for Advances in Genetic Diagnosis. JAMA. 319(23), pp. 2375–2376. doi:10.1001/jama.2018.6118

https://www.news.com.au/lifestyle/health/they-called-me-an-idiot-and-said-i-should-abort-the-anguish-of-a-prenatal-diagnosis/news-story/3ec2066d1696ce78b96c1470a8d0b2e9

https://www.cbsnews.com/news/down-syndrome-iceland/

http://www.abc.net.au/news/2016-11-22/down-syndrome-parents-pressured-to-terminate-pregnancy/8033216

https://www.nowtolove.com.au/parenting/family/world-down-syndrome-day-lily-mccain-45896

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