The Down Syndrome Community’s Death Debate

Let’s try an experiment: Imagine you are a high school junior just starting to think about college. You have your heart set on The Big Catholic Football School with A Good Academic Reputation. But your mom and dad want you to have options, so they make you go onto the websites of a few other schools and ask them to send you their application materials. When these arrive in the mail, you toss them into a corner where they sit for months and months. After all, your mind’s already mostly made up—there’s really only one school you’re thinking of going to.

Then, middle of senior year, calamity: You get rejected by The Big Catholic Football School with A Good Academic Reputation. Your dreams are shattered. Everything you were hoping for seems lost. The life you were going to live now seems unreachable to you. You plunge into the slough of despond.

Your parents, who love you, hate to see you this way, all mopey and certain your life is ruined. “What about the pamphlets from those other schools?” they ask. “Maybe you should have a look at them. They might not be as bad as you think. Maybe one of those schools is where you’re really supposed to end up. Something good could come of this eventually.”

Though your heart is heavy, you reach for the pile of brochures. You open the first one and, despite yourself, you like what you see. The campus is beautiful. There seem to be opportunities for study abroad, athletics, academic excellence, a rich community life—all the things you were looking to get out of college. This school has everything you were expecting from The Big Catholic Football School with A Good Academic Reputation. What strikes you the most is that the students look happy. They are beaming in fact. They are having the time of their lives. They look like they wouldn’t change life at this school for anything in the world.

Then you come to the back page of the brochure, and you are shocked to read the following paragraph:

Look, we know you didn’t get into your first choice school (that is after all why you are reading our brochure). We know you are vulnerable and feeling sorry for yourself. But we feel like we ought to mention that a lot of young people in your situation choose not to go to college at all. Despite the happy smiling pictures we’ve been showing you, a lot of first year college students get very depressed. Ever heard of the Freshman 15? Well, it’s a thing. Also, you could get an STD if you came here. Or someone could accuse you of rape. Or you could get so drunk that you fall off the back of a frat house porch and end up paralyzed. Even if you decide to come here, our degree probably won’t do much to help you get a job afterward. And you’ll have a boatload of debt to pay off. For all these reasons—and others—a lot of people in your situation just choose to skip college. Consider it.

Just to be clear: We’re not telling you what to do. We just want you to have this information.

So, that would be a little weird, right? No school would ever dream of using its own promotional materials to let potential students know that they could skip college if they wanted to, just like the American Cancer Society would never include a sentence in its materials telling people, “Of course, you have the right to smoke if you want to.” It would defeat the purpose.

Yet that’s just what some in what the Down syndrome community are advocating, and have been for some time. Two years ago I wrote in these pages about the strange case of the competing Down syndrome information pamphlets. The story was—and remains—a tangled one, with money, personal and professional ambition, and institutional competition clouding the facts. A thumbnail version is this: The two main Down syndrome advocacy organizations in the United States, the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC) joined forces with the National Society of Genetic Counselors (NSGC) and the American Congress of Obstetricians and Gynecologists (ACOG) to produce an informational pamphlet that could be distributed to expectant mothers whose babies had been given a prenatal diagnosis of Down syndrome.

The material they selected—a copyrighted pamphlet called the Lettercase booklet—contained reference to abortion. “After receiving a prenatal diagnosis and learning more about Down syndrome, some families opt to terminate a pregnancy,” it read. Ultimately this caused a rift in those organization forming the “Down Syndrome Consensus Group,” with the NDSS and NDSC turning their backs on the Lettercase booklet—which the developers had intended to sell to medical professionals, not give away—and producing their own pamphlet, in conjunction with a third, relatively new organization, the Global Down Syndrome Foundation (GDSF), based in Denver.

What followed was a flurry of resignations from boards of directors, institutional positioning, public disowning, and vaguely phrased imprecations of character. Like I said, the intrigue here is murky and complex. I never succeeded in getting—or understanding—the full story. Some who were privy to events claimed the rift was presaged by the demands of the Lettercase developers—a husband and wife team—who felt they should be allowed to charge money for the printed version of the booklets. Others accused the arriviste GDSF of trying to buy their way into First Among Equals status with the other national Down syndrome organizations.

But the reason that got the most attention, and which formed the basis of my article, was simpler. David Tolleson of the NDSC told me that the constituency he represents—people living with Down syndrome, sometimes called “self-advocates”—didn’t think it was appropriate for an organization like his to present abortion as a co-equal option to women who had received a prenatal diagnosis. For that reason, he said, his organization withdrew its support for the Lettercase materials.

Now, two years later, blogger Mark Leach, an attorney who is a paid staff member of the organization that distributes the Lettercase booklet, is once again touting the supposed benefits of “consensus” and demanding proof of Tolleson’s conversation with the self-advocates. “How was this discussion held? Who were the self-advocates and who spoke with them? When did this discussion happen?” he writes on his frequently updated blog, http://www.downsyndromeprenataltesting.com. He accuses critics (me?) who acknowledge his association with Lettercase of stooping to ad hominem attacks.

But Mark Leach and I agree on more than he probably thinks we do. The prenatal testing company Sequenom, Inc., which makes, distributes, and processes new, non-invasive tests for Down syndrome and other genetic conditions, is a growing company with increasing influence on the medical market for information about Down syndrome. Earlier this week Sequenom reported second quarter revenues of nearly $40 million, up 62 percent from the same time period in 2013. In a press release, the company acknowledged that its “revenues improved primarily due to increased collections and higher test volumes.”

This company needs to be trained—forced, if necessary—to provide good information to its clients about life with the genetic conditions it tests for. I think Mark Leach and I are in full agreement on that.

What we disagree on is the need to include a reference to abortion along with that good information. Those, like me, who oppose the abortion language in these pamphlets, are not motivated by a desire to destroy consensus or to deprive women of vital information about their “options.” (The abortion “option,” I might add, is not exactly a secret in our society.) Rather, we are motivated by a sincere, and principled, objection to abortion as a medical “cure” for Down syndrome. With that in mind, a consensus holding that abortion is a co-equal option for expectant mothers will never fly.

Furthermore, the medical professional organizations that demanded the inclusion of abortion language as the price of approval for the Lettercase booklets are not neutral players. They represent abortionists. They represent genetic counselors who advise women to “terminate” their pregnancies. For this reason, “consensus” in the Down syndrome advocacy community is ever doomed to founder on the shoals of abortion. That is an uncomfortable reality, but one which must be faced.

No college or university would tell potential students not to enroll. No lung cancer organization would tell people smoking is a fine thing to do. And no group that purports to represent the interests of people living with Down syndrome should present abortion of unborn babies with Down syndrome as a perfectly legitimate option. It just doesn’t make sense.

Matthew Hennessey is a writer and editor who lives in New Canaan, Connecticut. You can follow him on Twitter @MattHennessey.

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