Why This

Disability Activist


By Lisa Marshall

Medically reviewed by Neha Pathak

May 11, 2021

Rebecca Cokley's opinion of the gene-editing technology CRISPR can be distilled into one word.

"It's eugenics," she says, referring to the pseudoscientific movement inspired by Darwin's theory of natural selection and embraced by Nazi Germany and others to weed out "undesirable" traits and even whole races and ethnicities.

Cokley is the daughter of two parents who have achondroplasia, the most common form of dwarfism. From one of them, Cokley inherited a glitched version of a gene called fibroblast growth factor 3 (FGFR3), which helps turn cartilage into bone needed for growth.

Cokley, too, was born with achondroplasia, So were two of her children -- three generations who live with dwarfism. For Cokley, the genetic condition is a part of her family's cultural identity, much like her children's biracial heritage as the offspring of a white mother and a Black father.

While Cokley was in labor with her third child, who is of typical height, she overheard a doctor in the room suggest that Cokley be sterilized.

"They want to edit people like us out," she says.

That's one reason why Cokley views CRISPR, the gene-editing technology, as an existential menace.

In less than a decade, CRISPR has revolutionized the treatment of genetic disorders. This suite of techniques enables biologists to easily snip or resequence targeted regions of DNA to cure a host of hereditary diseases. What's more, when applied to sperm, eggs, or embryos, CRISPR may shut down those mutated genes permanently, so parents no longer pass them down to their children.

"Where does it stop? Is autism next? What if they discover a gay gene?"

- Rebecca Cokley

Rebecca Cokley

That has spawned fear among some disability rights activists. To them, dwarfism, deafness, or Down syndrome aren't so much disabilities as they are human differences. CRISPR theoretically could stamp out those conditions from the human gene pool for good. It also could usher in an era of "designer babies" selected for a particular eye color, dimples, fast-twitch muscles, and other chosen traits.

"People are very concerned, both philosophically and theologically, with this idea of creating genetically modified humans," says Insoo Hyun, PhD, a bioethicist at the Harvard Medical School.

Disabilities, or Differences?

It's illegal in the U.S. to implant a genetically altered embryo into a human uterus. But not all nations operate under such restrictions. And no safeguards may be enough to halt a rogue scientist from creating so-called CRISPR babies. 

Practically speaking, CRISPR offers little advantage over prenatal tests for avoiding severe genetic disorders. Some would-be parents who learn through screening that their baby may be born with cystic fibrosis or Tay-Sachs disease, an incurable neurological disorder that can lead to blindness, paralysis, and early death, can decide not to continue with the pregnancy. 

There also are limits to CRISPR's capabilities. It can zero in on a spot on a chromosome with unmatched precision. But many human attributes -- ranging from athletic ability to height to predisposition to depression --  involve so many genes that it's unlikely that CRISPR could manipulate them any time soon. For instance, researchers have linked more than 50 genes to intelligence.

"Technologically, I think this idea of designer babies is out of reach at this point," Hyun says. "But that doesn't get rid of people's fears."

Cokley is hardly reassured. She notes that in many places around the world, prenatal testing has slashed the number of newborns with Down syndrome, which causes a range of mental and physical disabilities. In Denmark and Iceland, for instance, the annual number of such babies carried to term after screening is in the single digits. Two out of three U.S. women carrying babies with the disorder, one recent study found, terminate their pregnancy. Cokley supports their right to choose. But she is conflicted.

"Not all people with disabilities want to be cured."

- Rebecca Cokley

"Where does it stop? Is autism next?" says Cokley, Disability Rights Program Officer at the Ford Foundation in New York. "What if they discover a gay gene?"

Cokley stands 4 feet 2 inches tall. She and her family are used to rude stares and being called midgets. Cokley has spinal and breathing issues. She has to specially tailor her clothes and modify her cars and furniture. Still, Cokley's achondroplasia is less severe than it is for some others. She has every expectation of living a long, fulfilling life.

"I wouldn't be the person that I am today if I didn't have achondroplasia," she says, adding that disabilities teach people new ways to think about the world.

Cokley can rattle off the names of differently-abled people who made big contributions to society. They include Henrietta Swan Leavitt, a deaf scientist who helped birth the field of astrophysics, and Stephen Hawking, the famed physicist who had Lou Gehrig's disease.

It disheartens Cokley that her two older kids -- Jackson, 10, and Kaya, 7 -- may be among the last generation of kids to grow up around the dwarfism culture. If her son and daughter were to turn to CRISPR to ensure that they would not pass on their mutated FGFR3 gene to their own children, Cokley says, "It would be their choice. But it would break my heart."

"People have a right to want a cure and I respect that," she says. "All I am saying is that not all people with disabilities want to be cured."