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DON’T KILL US T
he smiling world-famous athlete who swam across Lake Tahoe, Lake Champlain, Donner Lake, San Francisco Bay, Boston Harbor, Hawaii’s Alalakeiki Channel, and a good deal of the English Channel, is tiny. She is the size of a towering hobbit. She is the tiniest smiling world-famous athlete you ever saw. She is also perhaps the most courteous and polite worldfamous athlete ever. This may be because she does not like to talk about being a world-famous athlete as much as she likes to talk about two other things: water, “which is my home,” and the courage of people with Down syndrome, “which is my life.” Here, listen for yourself: “I first heard the words Down syndrome from my mom when I was six years old,” says Karen Gaffney, of Portland, Oregon. “It means it takes longer for me to learn things. I learn differently. I talk differently. I walk differently. I look differently. But I am like anyone else. Treat me the same. Judge me the same. That’s all I am saying to people when I talk about Down syndrome. Just that. Judge me the same as you would judge anyone else. As you would judge yourself, or your own child.” She started swimming when she was four years old, in a pool in the back yard, “to waterproof her,” says her dad, Jim. “I’m free in the water,” says Karen Gaffney, who has walked with a limp all her life because of a displaced hip on which she has had five surgeries, so far. “My hip doesn’t hurt in the water. I can just go and go and go. I’m confident in the water. I love it. It feeds me. Although sometimes in a long swim it does seem like I have been in the water for a hundred years and I think am I ever going to stop? Sometimes I dream about being in the water, yes. Sometimes when I am in the water I think I am dreaming, yes.
The astonishing story of famed swimmer and Down syndrome activist Karen Gaffney, to whom the University presented an honorary doctorate this past May. By Brian Doyle Sometimes I am not quite totally sure if I am swimming or dreaming about swimming, yes.” Down syndrome is caused by an extra chromosome. No one knows how or why the body makes an extra chromosome but it used to happen naturally in about one of every seven hundred babies born in America every year. Now it happens in about one of every two thousand babies born in America because more and more babies diagnosed in utero with Down syndrome are terminated. Terminated is another word for killed. About nine of every ten children diagnosed with Down syndrome in utero in America and Europe are killed before they take their first breath in this world. The most popular form of termination is pharmaceutical, in which drugs are injected into the uterus. The drugs have prickly names like mifepristone and misoprostol and gemeprost and methotrexate. Other forms of termination entail the use of suction pumps. Children who are allowed to be born with Down syndrome often have small chins, poor muscle tone, flat noses, brief necks, and short fingers. Generally they are much shorter than people without Down syndrome. Winter 2013 15
Often they are obese or tend that way. Often they have hearing or vision problems. Often their brains do not develop as quickly or thoroughly as the brains of people without Down syndrome. For this reason many children with Down syndrome are institutionalized. Institutionalized is another word for imprisoned in buildings from which they never emerge. Institutionalization is fading away in North America but it is doing just fine in eastern Europe. Karen Gaffney has a small chin, a flattish nose, a brief neck, and short fingers. She does not have poor muscle tone, though, nor is she obese, because she swims two miles a day, usually, in the pool at the Multnomah Athletic Club, to which she has a lifetime membership, because the people who run the MAC are happy to be associated with world-famous athletes, of which they have seen many; and also they are hugely impressed with Karen Gaffney, who may limp from her hip problem and wear spectacles and not be very tall or powerfully muscled and only be able to use one leg to kick with when she swims because of her hip, but who has swum across vast bodies of water in the dark in frigid temperatures with not much more equipment than her trusty wet suit and not much more help than her dad following her in a motorboat with snacks and water. She has swum nine miles across Lake Tahoe. She was one of six relay swimmers across the twenty miles of Channel between England and France. She swam the three-mile length of Donner Lake in California a dozen times. She swam five miles in Hawaii from the island of Molokini to the island of Maui. She can swim all day without getting tired, says her dad. She swam five miles across Boston Harbor. She has swum from the island of Alcatraz in California