Letter to the editor: We're failing the human rights test

Published in the Sydney Morning Herald (16/9/2010) in response to the report of unreliable nuchal translucency testing as a prenatal indicator of Down syndrome:

The most distressing aspect of the study of Down syndrome tests is that the researchers appear heartlessly unconcerned that more than 90 per cent of children who test positively are aborted (''Down syndrome tests performed inaccurately by 45% of operators", September 15). Children at risk of abortion because of Down syndrome have human rights. Each child at risk of abortion because of a disability is entitled to rights protection ''before as well as after birth'', as recognised by the Universal Declaration of Human Rights.

Under the UN Convention on the Rights of Persons with Disabilities, Australia agreed to protect children at risk of arbitrary deprivation of life because of their disabilities; to provide them with prenatal as well as post-natal care; to institute education programs that foster respect for them as part of human diversity and humanity; and to combat stereotypes, prejudices and harmful practices perpetrated against them.

It would be hard to find a more harmful practice than the promotion of Down syndrome testing.

Rita Joseph Hackett (ACT)

And this response to Rita Joseph was published by the Sydney Morning Herald today (17/9/2010):
A lifelong struggle is too much to bear

Rita Joseph (Letters, September 16) does not address the experience of raising children with a serious intellectual disability. It is often accurately described as ''rewarding'', but less publicised are the struggles of parents who are demoralised, exhausted, emotionally and financially overstretched, and who juggle the needs of a disabled child with those of their neurotypical offspring.

Some intellectually disabled children make extraordinary gains, which lead to fulfilling and even largely independent lives. But others require permanent care and assistance in such basic tasks as dressing, feeding and toileting. For many parents, the biggest worry is who will take care of their children as they age.

Especially while government assistance for disabled people and their carers remains in such a parlous state, it is hard to blame parents for deciding to terminate a Down syndrome pregnancy, sparing themselves decades of heartache and uncertainty. Those who have not made such a decision are in no position to judge.

Thea Gumbert Alexandria