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Fixing the System Against Down Syndrome Prenatal Testing

Leading part of the anti-NIPT campaign is the actor, comedian and mother of a boy with Down syndrome, Sally Phillips (best known as Tilly in BBC’s Miranda). She created the documentary “A World without Down’s syndrome?” which aired on BB2 last year in the hopes of offering people a new stance on Down syndrome and disability in general. The program has been highly praised, particularly by the Down syndrome community. But it has also received some criticism, namely for, “glorifying” disability or evoking guilt from mothers who had already aborted a baby with Down syndrome. One critic said that Philipps’ take on Down syndrome was overly positive and unrepresentative given that her son was “high-functioning.” Yet, why should that be an issue? We should not be determining whether we abort a baby based on their so-called “functioning level.” Once we start deciding who we do and do not want in our society, we begin to enter very difficult territory.

This is also a common issue with people on the autism spectrum, which I myself am on. Many scientists are desperate to find a “cure” for the condition, best referred to as a”‘neurotype,” while many people who are actually on the spectrum — including me — are against this. The common argument against this is that autistic people are “high functioning” and therefore not “in need” of this unfeasible “cure.” Yet, how can we ever decide which disabilities need “curing” and why is our society so obsessed with “curing” or eradicating difference? The voices of people actually affected by these issues are constantly ignored. People with Down syndrome and their families should be consulted on the NIPT test, and, interestingly, they are overwhelmingly against it.

It seems people are all too eager to dismiss campaigners against NIPT once they reveal they have a personal connection to the issue. This may happen now when I say that my aunt, who passed away at the end of last year, also had Down syndrome. Yet why do people perceive our views on this issue to be biased by our own experiences of someone with Down syndrome? If anything, we speak with greater authority on the issue because we know exactly how fulfilling a life with Down syndrome can be, and how much joy they can bring to their relatives. We have witnessed it ourselves first-hand.

The imminent introduction of NIPT on the NHS shows we still take issue with difference in our society, or why would we be so opposed to bringing babies with Down syndrome into the world? We will never be fully accepting of disabled people in our society until we accept the birth of disabled children. As the American disability activist Celeste Adams so aptly quoted in her TED talk, “Don’t fix us, fix the system.”






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