Wrongful birth and abortion: what’s the damage of disability?

In a very moving article, Kristina Chew wrote of her son, who has autism, and whether she would have aborted him if given the chance through prenatal testing. In South Africa, a couple was awarded 4.4 million Rand (or about $440,000) precisely because they were not told prenatally their child had Down syndrome–they said they would have aborted had they known prenatally. Both stories are revealing in what they consider the damage of disability.

Chew shares how she can’t imagine her life without her son, who she describes as loving and towering over her in his 6ft frame. But, she worries about her son’s future and what it will hold, particularly after she is gone. Chew notes the sub-level of support he can expect to receive, but, in comparison, even that is much better than in most of the world. As Chew rightly notes:

The fact of the matter is, there are few places in the world that do an adequate job of caring for an individual with disabilities.

Chew says she would have continued her pregnancy even had she known prenatally of her son’s autism. Nevertheless, Chew concludes that abortion must remain available so that women may choose to abort their child rather than live with the fear she has for her son’s future due to the lack of needed social supports.

This lack of support is what is cited in the article on the South African court case. Cases like the one those parents brought are referred to as “wrongful birth”: where the birth of the child is wrongful because the parents would have aborted had they known prenatally of their child’s disability. It is a tort recognized in just over half the states in America. (I have written previously on this tort).

To establish a claim, the parents must show some measure of damage they’ve incurred for the medical team’s failure, as the article puts it, “to test early in her pregnancy if the foetus was normal.” But what are the damages that the parents cite for now having to raise a child with Down syndrome?

We have not been able to get the best care and treatment for our daughter,” [the mother] said.

The greatest challenge they faced was not being able to get their child into mainstream crèches and schools.

“We were shut out, there was a lack of understanding from schools,” she said.

Before the pregnancy, the woman had been actively involved in her husband’s business but after the birth her work was limited as she had to care for her special needs child

In both cases, the justification to abort and why disability is a claimed legal damage has little to do with the child actually having a disability. Instead, the damage cited is lack of support; inability to access education; insufficient social services to care for the child.

This is not to say that having a disability does not in some way make things more difficult in life. The very word, “disability,” means a lack of ability. But, the parents of these children who are considering–or swearing under oath that they would have–aborted their child are not saying that the damage is autism or Down syndrome. Chew writes about the lack of social support for raising a child with autism and the South African parents spoke of their child being “shut out” from schools and not having alternatives such that the mother had to leave the workforce to care for her child.

So what is the disability? The health condition or society’s decision to not fund support services or include individuals with disabilities?

This is the first of two posts on this subject of wrongful birth and abortion. I invite your thoughts on what you think the damage is of disability: is it the disability itself or society’s failure to accommodate individuals with disabilities?

UPDATE: the second of this two-post series can be found at this link.