Stella Young

Stella Young Photo: Chris Hopkins

Essential Baby was saddened to hear of the sudden passing of Stella Young at 32 years of age on December 6, 2014. In remembrance of the talented writer and disability activist, we are re-publishing this piece she wrote on her views of genetic testing.

As a disabled feminist, I'm often asked about my views on medical procedures like prenatal screening and pre-implantation genetic diagnosis (or PGD, where IVF embryos are screened for genetic characteristics). Tests for some conditions, such as Down syndrome, have become par for the course in recent years, and the list of conditions routinely screened for is growing all the time.

Most people accept that the purpose of such procedures and techniques is to identify and eliminate genetic conditions by terminating foetuses affected by them or, in the case of PGD, select embryos that are unaffected by the conditions for implantation and intended pregnancy.

Let me say upfront that as a feminist, I am pro-choice. I believe that women should have the right not to bear children they feel unable to parent, without qualification. But as a woman with a genetic condition, I can't pretend that conversations about screening for disability aren't uncomfortable. Screening foetuses and embryos for genetic conditions sends an implicit message that the lives of those of us living with the conditions are simply not worth as much; that our lives are of lesser value.

Nonetheless, I'm frequently called on to have these uncomfortable conversations. A few years ago I was approached by a nervous looking woman on a tram on my way home from work. "Excuse me," she said. "Do you have Osteogenesis Imperfecta?" With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it's because they know someone else with it. So I was surprised by her next line. "I was pregnant with a baby with OI and I had a termination." I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn't quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, "I made the right decision." Then she got off the tram.

I thought about this woman for days. Indeed, I've thought about her many times in the years since we spoke. As challenging as I found my interaction with her, I have no doubt that she was much more confronted by our meeting. I'm confident that the picture she'd had of a person with OI didn't look like me. It didn't look like a young professional woman on a commute home from work. I strongly suspect it looked much more like the ones I've seen in medical textbooks from the 1940s. Despite knowing a number of really fantastic people with OI who lead full and productive lives myself, I bet this woman hadn't been introduced to any of them. Her view of the condition was more likely shaped by what she'd been told by medical professionals and, perhaps more worryingly, the internet.

And herein lies the problem. What a doctor, even one who specialises in my condition, will tell you about my life will paint a vastly different picture to the one I'll give you. The information given to families is generally given by medical professionals who may know the pathology of certain conditions inside and out, but it doesn't mean they know what it's like to live with these conditions, or what it's like for our families.

Contrary to many assumptions made about lives like mine, I do not suffer. Even all the fractures and surgeries I had in childhood, and those that occasionally still occur in adulthood, I don't consider to be "suffering". I just consider them a part of my life. And those hypothetical questions that people are so fond of: "If you could have your life over...?" "If you could take a magic pill...?" No. Emphatically, no. While having OI is undeniably not all beer and skittles, I believe that my life has been greatly enriched by it. All members of my family, my parents and siblings, have said the same thing repeatedly throughout my life. I've got no reason to suspect they're lying.

That's why conversations about genetic screening that centre on "quality of life" are so problematic. Quality of life is a very subjective thing, and it simply can't be predicted by genetic code. Indeed, the things that cause most difficulty in my life are not central to my genetic condition at all. They're things like lack of access, discrimination and negative attitudes towards disabled people. These are things we can change, and indeed, they are changing.

While I support the rights of parents to choose when, how and who they parent, it's vital to recognise that these choices are not made in a vacuum. Many factors entirely unrelated to genetics contribute to our lives. If people are going to have these choices, the context in which we make them must also be thoroughly considered. If parents are going to be given information about genetic conditions, they must also be given information about the lives of those who live with them. Because we are all more than the sum of our DNA.

This post originally appeared on Ramp Up

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