Rebecca Cokley is former executive director of the National Council on Disability. She served in the Obama administration from 2009 to 2017.
It’s ironic that news of a breakthrough in human gene editing was released on July 26. That was the 27th anniversary of the Americans with Disabilities Act, the landmark civil rights legislation intended to remedy centuries of discrimination against 57 million disabled Americans. And yet the announcement served as another reminder that there is still much desire to put those rendered undesirable in our place.
Nearly 1 out of every 5 people in this country has a disability. What would it mean for society to render such a large group of people “unfit” for the human germline? Stories about genetic editing typically focus on “progress” and “remediation,” but they often ignore the voice of one key group: the people whose genes would be edited.
That’s my voice. I have achondroplasia, the most common form of dwarfism, which has affected my family for three generations. I’m also a woman and a mother — the people most likely to be affected by human genetic editing.
I remember clearly when John Wasmuth discovered fibroblast growth factor receptor 3 in 1994. He was searching for the Down syndrome gene and found us. I remember my mother’s horrified reaction when she heard the news. And I remember watching other adult little people react in fear while average-height parents cheered it as “progress.”
How, if you are an average-height parent, do you explain to children whom you’ve spent years telling are beautiful the way they are, that if you could change them — fix them in a minute — you would?
People with disabilities have always played pivotal roles in society. People with dwarfism were hired as engineers to work in the engines of 747 jets. Deaf scientists Henrietta Swan Leavitt and Annie Jump Cannon created the field of astrophysics. And Dan Harmon, who has a form of Asperger’s, makes us laugh with TV shows such as “Community.”
I am who I am because I have dwarfism. Dwarfs share a rich culture, as do most disability groups. We have traditions, common language and histories rich in charismatic ancestors. I can honestly say that I may not have been able to work in the White House doing diversity recruitment for President Barack Obama had I not been born a little person. It allowed me to understand discrimination, isolation and society’s lowered expectations.
While non-disabled people fear a prenatal diagnosis of disability, disabled people think of the possibilities. How rich would our society be if we all did this? What if that child with osteogenesis imperfecta becomes a world-changing architect because they think differently about how the world is set up due to their disability?
Now think about the message that society’s fear of the deviant — that boogeyman of imperfection — says to disabled people: “We don’t want you here. We’re actively working to make sure that people like you don’t exist because we think we know what’s best for you.” This is ableism. It’s denying us our personhood and our right to exist because we don’t fit society’s ideals.
Proponents of genetic engineering deliberately use vague language, such as “prevention of serious diseases,” leading many people with disabilities to ask what, in fact, is a serious disease. Where is the line between what society perceives to be a horrible genetic mutation and someone’s culture?
We cannot look at this “breakthrough” without looking at the context. In times of economic and political uncertainty — as we saw with the austerity measures that swept Europe in the past several years — disability is often stigmatized in an attempt to cut costs. We can trace this historically to the growth of the eugenics movement in the 1920s.
Too often the media and society frame people with disabilities as takers, beggars and unworthy cost drivers for the rest of the public. Most recently, The Post published an article on the costs associated with people receiving Social Security Disability payments. These portrayals contribute to the myth of the “Medicaid mama,” reminiscent of the damaging “welfare queen” rhetoric of the Reagan era.
Such ableism adds to the notion that people with disabilities do not add to the fabric of society; that as lesser than science’s definition of what is “normal,” we have nothing to contribute; that our fight for equality is not as valid as other movements’ because with the right innovation, medicine could “fix us.”
Let us not forget that disabled Americans led the charge to save the Affordable Care Act for all Americans last month. It remains critical that we drive decisions about the future of disabled people and our health care. Many of us see our disabilities as a rich and diverse culture, many of us want to pass that culture down to our children through our genes, and many of us see no reason not to. We should have that right.
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