Alice Wong, who served on President Barack Obama’s National Council on Disabilities, is the founder of the Disability Visibility Project. In a Dec. 19 episode of “Flash Forward,” a podcast that considers the social repercussions of hypothetical future developments, Wong discussed the possibility of human-embryo gene editing reaching a point at which certain disabilities can be treated at (or before) birth and thus eradicated.
“We’re talking about removal of diseases,” she said. “That’s forever. That’s a change — a modification — that will be passed on to future generations. So that’s actually genocide. It’s a form of eugenics where certain lived experiences are seen as undesirable and unimaginable.”
Wong, who has spinal muscular atrophy, relies on machine ventilation. “My life is better” thanks to medical advancements, she said. But when it comes to CRISPR — the gene-editing tool that has recently been used for the first time on human babies to prevent HIV transmission — Wong is worried that the ethical implications have not been fully considered.
“A lot of this conversation [around CRIPSR] is about the removal of suffering and pain and disease,” she said. “Whenever I hear stuff like that — they’re talking about me, people of my community.”
Her concern is with doctors having the authority to decide what’s a life worth living by curing conditions which they consider to be “disabilities.” That, according to Wong, would constitute “ableism,” pure and simple.
“For people who want to do this to their own body — more power to you … But I do think that a pre-emptive alteration of genes [is] based on fear. [Pre-emptive genetic alterations are] based on the imagination of non-disabled people of what living with a disability feels like,” she said.
Rebecca Cokley, who — like Wong — served on Barack Obama’s National Council on Disabilities, offered a similar perspective in a Washington Post op-ed last year. She argued that disabled people are a community unto themselves and that eliminating their conditions means erasing the potential future of their culture. She asked, “Where is the line between what society perceives to be a horrible genetic mutation and someone’s culture?”
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