Rebecca Atkinson has not had her unborn baby tested for Down syndrome. She knows some people will say that was irresponsible. But how, as a disabled person herself, could she let her child’s physical condition decide whether or not it was born?

From the [UK] Guardian:

In a wide-ranging first-person piece, Rebecca Atkinson examines selective abortion from the standpoint of a person with a disabling genetic condition herself. Atkinson, who describes herself as a “pro-choicer,” has Usher syndrome, which causes partial deafness from birth and gradual loss of sight in adulthood.

Atkinson describes her life as no less worthy of existence than any other, and says the “pain and suffering” of disability that people seek to avoid are “largely inflicted not by the physicality of the disability itself but by the negative attitude of others.” That knowledge led her to decide not to get prenatal screening for Down syndrome for her own pregnancy, and instead to face down accusations that she may “burden society with a disabled child.”

An excerpt:

In my view, a decision to test rests on the premise that a baby with Down syndrome is at worst something that needs to be caught in the net and disposed of, at best something that needs to be emotionally “prepared for” rather than just accepted as a child that falls on a different part of the spectrum of human life from the next. Once I had decided that, even if it were possible, I wouldn’t be willing to test for my own impairment, or terminate a pregnancy on that basis, the decision not to screen my baby for Down’s syndrome came easily. After all, if I feel it’s wrong to value a “normal” life over and above mine, shouldn’t I extend that belief to all impairments, not just the one I know about because I have it myself?

There: I’d made the “individual choice” about my reproductive destiny that the pro-choicer in me believes in … It was an easy decision to arrive at, but a much harder debate to depart from. For it is here, where pro-choice feminism collides with disability rights, that my once black-and-white views suddenly become grey and I’m left struggling with the question of whether abortion is always justifiable, after all.

The very fact that the choice to screen exists means that the woman can never win. If you terminate, you are left open to the moral scrutiny of pro-lifers. And if you decline screening, as I have, or continue a pregnancy after a positive diagnosis, you are left wide open to a charge of moral culpability, of burdening society with a disabled child. So who, if anyone, is morally culpable here? For me, the answer lies not in pointing fingers but in questioning the perception of disability as synonymous with undesirability.

It’s one thing if a woman is not ready for a baby: I stand by her right to choose in that instance. But is it OK to decide you are ready for a baby, get pregnant by choice and then terminate on the grounds not of your ability to be a parent, but of your desire to be a parent to a particular type of child? As science extends our capabilities to detect more and more conditions in the womb, as it inevitably will, I can’t help asking if perhaps we should pause to ask if knowledge is always power. Should we have the right to determine who does and who doesn’t get to inhabit the world?

For, as my own father put it when I told him I wasn’t going to screen his grandchild for Down’s syndrome, “I’m so glad there wasn’t prenatal screening when we were expecting you.” If there had been, perhaps the genetically flawed person, the “glimpse of horror” that is me, would never have existed.

This entry was posted on Monday, March 10th, 2008 at 8:50 am and is filed under NOT2BEMISSED, commentary, eugenics, first-person, genetics, personal stories. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post