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My Son Has Down Syndrome—Stop Telling Me He Has No Future

Time to take apart the dangerous logic that casts children with Down syndrome as incapable — especially since it’s the same logic that perpetuates harmful growth-attenuation treatments.

By Rachel E. Adams


(Photo: Thomas Hawk/Flickr)

“Your son should be able to go to school. He might be able to work, maybe as a janitor or a bagger in a supermarket,” said the geneticist who first diagnosed my son with Down syndrome, just after birth. We’ve just returned for a six-month follow-up exam, and as my baby lies on the exam table, chewing placidly on a rubber giraffe, I’m struck by how differently doctors treat him than they did his older brother, Noah.

When Noah was born, doctors said nothing about his future. I would gaze at his tiny, infant face and imagine he could be anything. Maybe he would write a great novel, find a cure for cancer, a fix for climate change, negotiate a peace treaty. Where Noah’s future seemed delightfully open, his brother Henry’s seemed defined by visions of a lifetime of limitations.

The books and pamphlets we consulted to learn about Down syndrome weren’t precisely descriptive; instead, they tended merely to list every medical complication that might befall my son in the first years. From there, I found experts predicting disappointment at every stage of his life. There is the infamous pronouncement of Princeton University philosopher Peter Singer, who argues for euthanizing babies born with severe disabilities; in Singer’s characterization:

To have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child’s ability. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player.

Singer’s sweeping statement here is a dangerous myth — one powerfully refuted by literary critic Michael Berube, whose son, Jamie, has Down syndrome and could do most of these things at age 14.

A popular education website reports that students with Down syndrome rarely develop beyond the academic level of a typical six- to eight-year-old. That’s another widespread myth: Although they typically learn more slowly, children with Down syndrome have a wide range of academic abilities, and many of their limitations have come from low expectations as much as from lower potential.

More concerning than the inaccuracy of these statements is their overwhelmingly negative cast, which emphasizes future liabilities at the expense of recognizing each individual’s potential for growth and development.

I was reminded of these grim pronouncements when I read a recent New York Times Magazinestory about the “Ashley treatment,” the controversial practice of medically induced growth attenuation. Although the “treatment” has never been used on a person with Down syndrome, it is premised on similar beliefs about what the future holds for children with disabilities. According to Douglas Diekema and Daniel Gunther, the doctors who first prescribed it to the patient known as Ashley X, growth attenuation is intended for “nonambulatory children with severe, combined neurologic and cognitive impairment.” It involves administering a combination of hormones, medications, and surgical procedures to stunt their growth and block the development of secondary sex characteristics.

History is full of cases of people who were deemed irredeemably incapable because they were unable to communicate.

Growth attenuation is designed to keep a child’s body in line with a brain that will never develop more than a minimal level of awareness. The reasoning is that keeping them small and immature will help families care for them and embrace these children in family life. And that’s very dangerous reasoning indeed.

I put the word “treatment” in scare quotes because I associate the term with practices designed to remedy illness, pain, and suffering. I’m not convinced growth attenuation does any of these. In confessing my aversion to this practice, I’m aware that many of the children who receive the Ashley treatment have needs very different from those of my son, Henry. Ashley X is described as unable to walk, sit, or hold up her head without assistance. Although responsive to her surroundings, she cannot speak and gets her nutrition through a tube. While Down syndrome has caused Henry to develop more slowly, at age eight he can read and write; recite whole episodes of The Muppet Show by heart; swim across the pool; and just started his first season of Little League.

And yet, I see a similar logic at work in the way many people perceive Down syndrome: Not only do they believe that my son’s disability allows us to know what his future holds, but that it is a future in which he will be limited and burdensome. It is this same troubling logic that motivated the Canadian government to deny permanent residency to Felipe Montoya, who immigrated from Costa Rica to take a position as professor at York University, because his son with Down syndrome might place a “burden” on the health-care system.

This reasoning is flawed in many ways. One is the widely disputed concept of “mental age” that is often used as a rationale for growth attenuation. As philosopher Eva Kittay — whose daughter Sesha, now in her 40s, was born with severe disabilities — observes: “You have to think about your family changing. You will have other needs. They will have other needs.” Even people with the most significant disabilities grow and develop. To attribute to someone a mental age of six months is to assume that person will never evolve. But to live in a 40-year-old body, as does Kittay’s daughter Sesha, is to be altered by decades of experience that cannot be accounted for by mental age. Not only will the child be a different person in middle age, but so will their parents, and no medical treatment can change that.

Another error is the troubling conviction among proponents of growth attenuation that children like Ashley are unaware of what is being done to them. History is full of cases of people who were deemed irredeemably incapable because they were unable to communicate. But new technologies for communication and detection of brain activity are constantly being developed. Take the case of Ruth Sienckiewcz-Mercer, who became completely paralyzed and unable to communicate after a bout of encephalitis at age five. Doctors diagnosed her as an “imbecile,” and she was confined to an institution where neglect and abuse were rampant. Eventually, new staff discovered she could communicate by moving her eyes, revealing previously unrecognized depth of intelligence and understanding. Her remarkable story is told in the memoir, I Raise My Eyes to Say Yes.

But does growth attenuation truly merit our censure, given that the procedure is extremely rare and so controversial that few doctors agree to perform it? Beyond their dire consequences for the individuals involved, these treatments matter because they reveal a logic that forecloses the future for so many children with disabilities who, the story goes, can look forward only to suffering and limitation. Don’t get me wrong: There is nothing wrong with being a janitor or a bagger at a supermarket. I wouldn’t be sorry if Henry ended up with one of these jobs, as long as he is treated with kindness and respect. Nor am I arguing against planning for the security and well-being of a dependent who may need lifelong care. But when we are too quick to imagine that this is a child’s entire horizon of possibility, we deny the possibility of an open future.

One of my favorite memories of Henry’s babyhood also involves flawed thinking about the future, this time my own. I confessed to one of his therapists that I had become a Down syndrome stalker. When I saw adults with Down syndrome, I would sometimes follow them in the hope of catching a glimpse into my son’s future. “I doubt that,” she laughed. “Henry’s future is going to be completely different. With all the therapy he’s getting, and the educational opportunities available today, who knows what he’ll be able to do?” I’m grateful to her for pointing out my mistake. Without knowing how different his future will be, as Henry’s parent it is my job to make sure her question remains open.