Indie Shorts Awards New York Interview with Gaele Sobott

For many disabled people, existence is a continuous act of resistance. I wrote this poem as an act of resistance and because of my growing concern about prenatal screening and diagnosis during pregnancy and Pre-implantation Genetic screening.

Two prominent human rights speakers with Down syndrome, John Franklin Stephens and Charlotte Fien, called on the United Nations to take action against countries that actively aim to eradicate the birth of babies with Down syndrome. Stephens said, “We are the canary in the eugenics coal mine. Genomic research is not going to stop at screening for Down syndrome. We have an opportunity right now to slow down and think about the ethics of deciding that certain humans do not get a chance at life.”

But slowing down is not foreseeable when the prenatal testing market is such an extremely lucrative segment of active growth for the diagnostics industry, estimated to be worth up to US $1.3 billion a year. A report by Fact.MR estimates the global market for Pre-implantation Genetic Testing will reach US $575 million in revenue by the end of 2022. Of course, profit is not the stated motivation for genetic testing. It is sold to prospective parents as a means to eliminating disease, illness and impairment with the expectation of eradicating the existence of various groups of people with genetic mutation. But the critical concepts and protocols involved in deciding who should not be born have not been clearly defined by governments, the medical fraternity, genetic technological corporations or the health insurance industry.

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“For many disabled people, existence is a continuous act of resistance. I wrote this poem as an act of resistance…”

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