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Jensen / Society’s disabled view of ‘perfect’

YOU don’t see many people with Down syndrome around anymore. I used to work in “special needs” schools as well as in respite care, so I got to know children with this condition, their love of life and laughter.

Nick Jensen.

Down syndrome, the most common genetic abnormality, is caused by an extra copy of the 21st chromosome (also known as Trisomy 21). The common physical characteristics include stunted growth, almond-shaped eyes and a flattened nose. Usually there is also an intellectual impairment and some increased risk of medical complications such as cardiac, intestinal and thyroid disease. Some may need significant support, but most will lead independent and ordinary lives.

People with Down syndrome are slowly but surely being eradicated from our society. Because of the common occurrence of this condition, screening tests have been developed over many years such that now it can be determined with 99.5 per cent accuracy, using the new readily available Non-Invasive Prenatal Testing (NIPT), whether an unborn child is likely to be carrying an extra copy of the 21st chromosome.

It is considered routine care to offer a pregnant woman what is known as a “First Trimester Screen” – an ultrasound and blood test are statistically analysed to determine the mother’s risk of her child having several different genetic conditions, including Down syndrome.

What is often not communicated is that the test’s primary purpose is to prenatally determine whether the child is at an increased risk of these conditions so that the pregnant woman can have further testing to confirm this and ultimately proceed to end the pregnancy.

A friend recently went for these tests, unaware of why they were being recommended. As she went for her ultrasound the nurse informed her that if it was found that her baby did have Down syndrome, they would support her through her termination.

My friend was shocked and (already in a hormonal state) declared her confusion as to why this would even be suggested. The nurse simply kept reassuring her that if she did need a termination, it was a simple and painless procedure.

This is not an unusual story, with “Lateline” last year reporting “many women [with a prenatal diagnosis of Down syndrome] were put under repeated pressure to terminate their pregnancies and given only worst-case scenarios for their baby’s chances of a meaningful life”.

Current legal practice is that it is the parents’ choice as to whether to have these screening tests in the first place and following this whether to continue with the pregnancy if a diagnosis of Down syndrome results.

In the medical profession it often seems there is an assumption that all women will want to have these screening tests performed and if their baby is found to have an abnormality, they will want to end the pregnancy.

This perhaps stems from an unspoken belief that allowing a child with such an abnormality to be born would be a burden on the family, their community and the health system at large, and that a child with any detected “imperfection” would not have worth or be wanted.

In Australia about 96 per cent of infants prenatally diagnosed with Down syndrome are terminated. In places such as Iceland it is 100 per cent. It won’t be long before there are no more people with Down syndrome in our society and our world will be poorer for it.

Politicians also need to take part of the responsibility for this tragedy. The sacred cow of choice, echoed just last week by our Chief Minister, inevitably leads to situations such as this. This choice should end with toothbrushes, career decisions and lifestyles, not extend to the extermination of an entire group of people. It is a great irony that although we are providing significant increases in funding and support for people with disabilities through the NDIS, we are at the same time targeting their elimination.

If my wife and I are blessed with another pregnancy, we will not be taking the pre-screening test. Rather we will embrace the opportunity if we have a child with Down syndrome, with the added advantage of being able to see a unique and beautiful face walking down Canberra streets for many years to come. I don’t think they are the ones with the disability, but rather it is often our concept of the “perfect” which is truly disabled.

Nick Jensen is the director of the Lachlan Macquarie Institute, which helps develop leaders in public policy (lmi.org.au).

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6 Responses to Jensen / Society’s disabled view of ‘perfect’

Chris says: 24 May 2017 at 3:10 pm

Nick Jensen should be described more correctly as an executive of The Australian Christian Lobby.

Reply
Geoff Findlay says: 24 May 2017 at 5:12 pm

Well said Nick!
And it is also our view of ourselves and our presumed autonomy that is disabled.

Reply
Meg says: 24 May 2017 at 7:19 pm

What Jensen doesn’t acknowledge is the anger and frustration that people with Down syndrome often experience. They don’t want to be different, they want to be able to have and do what others do and resent that they can’t. As adults they often want their own homes, partners and children and don’t understand why they can’t. Not all happy little Downs syndrome kids grow into happy adults. It’s all very well for adults to decide to have Downs babies but perhaps it’s not for the right reasons.

Reply
Nick Jensen says: 25 May 2017 at 9:18 am

Thanks Meg,

Happy to acknowledge the frustrations, and indeed I have worked with adults as well as kids. This paragraph that was edited out of the article due to space limitations may be of interest.

-There was a campaign recently raising awareness called #NotSpecialNeeds where several people with Down Syndrome raised the point that they don’t really have ‘special’ needs. ‘If we needed to wear a giant suit of armour that would be special, or eat dinosaur eggs, or be massaged by cats.’ Lauren Potter says ‘but what we really need is education, jobs, and opportunities. Friends and love. Just like everybody else. Are these needs special?’ –

I guarantee that even with the struggles however, 100% of these people would still choose to have been born given the choice.

Reply
Nick Jensen says: 24 May 2017 at 8:55 pm

Hey Chris, thanks for reading.

I used to work with the ACL as their ACT Director, and wrote for CityNews under that title. I have however been Director of the Lachlan Macquarie Institute for a number of years since then, a seperate entity to ACL. My opinions are also my own, not LMI’s or ACL’s.

Reply
Trish Dove says: 26 May 2017 at 10:10 pm

When I was pregnant with my daughter I had German Measles and advised to terminate my pregnancy. My reaction was shock, I chose, without hesitation, to keep my baby. Today she is an intelligent, healthy mother of three children. Had I taken the dr’s advice I would have taken the life of more than one human.
Every life is precious

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