I wrote this post back in 2009, before I learned so much more about clinical trials and the cognitive drugs that are on the horizon for people with Down syndrome, and know that they're not designed to *change* anyone. I also wrote this before I learned of the devastating increase in early-onset Alzheimer's disease in people with Down syndrome and the need to find answers that will benefit not only people with Ds, but with the human population as a whole. I find my perspective in this interesting, though, written when Sammi was just 3 1/2, when I was quick to jump up on my high horse and decry any kind of perceived social injustice against people with Ds or other cognitive disabilities. Would I support the cognition-enhancing drugs that are being tested now? DEFINITELY. If, as they're purported to be, they're safe and proven effective and help my daughter increase her academic and self-help skills without changing her personality, bring 'em on.
I read a very interesting article yesterday, posted in Wednesday’s Los Angeles Times newspaper. In a nutshell, it documents research currently being conducted to develop a “cure” for Down syndrome. Setting the fundamental intent of the article aside for a moment, I need first to harp on a few little details that are grating on me like nails on a chalkboard (or like Samantha grinding her teeth!). I thought reporters were supposed to do their research first before writing an article (especially for such a highly circulated publication!). The term “cure,” used several times in the writing, is tremendously inaccurate. Down syndrome is caused by an extra copy of the 21st chromosome which is present in ALL of the cells (unless the person has mosaic Down syndrome, where only some of the cells have the extra copy). You can’t “cure” that. Now I’d swear that the first time I read the article, they referred to people who “suffer” from Down syndrome (as many articles tend to do, which drives me crazy), but now, upon re-reading, I don’t see any reference to that. Could they have changed the wording somewhere along the way? Maybe I just wanted to see that so I could be extra-annoyed. Just as an FYI, my daughter does not suffer in any way. While I would have preferred it if she had been born without a heart defect that she needed surgery to repair, she’s certainly not suffering! Finally, the article calls Down syndrome a “disease.” Uh, correct me if I’m wrong, but genetic issues are not diseases. I feel like that wording perpetuates the fears of the ignorant that they can actually “catch” Down syndrome. At least People First language was firmly in place throughout the article.
Now, the intent of the article was to explain that research has shown that the brains of people with Ds are unable to make norepinephrine, a hormone and neurotransmitter. The drugs Droxidopa and Xamoterol both convert to norepinephrine in the brain, and in mouse trials, mice with a replicated version of Down syndrome responded with increased, “normal” cognitive functioning when given Xamoterol. However, the effects were short-lived, and the mice returned to their previous state quickly.
While I do find this research very interesting, as soon as I read this, I was reminded of Flowers for Algernon, a book by Daniel Keyes written in 1958. I read it for a class in 9th grade, and was immediately both haunted and obsessed by this bittersweet tragedy about Charlie, a man with a cognitive disability who becomes the first human to undergo an experimental surgery to increase his intelligence artificially. A mouse named Algernon was the first successful recipient. Throughout the story, Charlie, placed under a virtual microscope by doctors and researchers, begins to show all of the positive signs of an increased mental capacity. He eventually becomes a genius, eclipsing the intelligence of those around him, and continuing his own research on the procedure, only to discover that there is a flaw in the research, and that (in the fictional context of the book), “Artificially-induced intelligence deteriorates at a rate of time directly proportional to the quantity of the increase.” Algernon deteriorates, becomes unstable, and dies. Charlie begins to deteriorate as well, evident to the reader through his own words in progress reports he wrote throughout the trial.
I cried at the end of this book, and still get teary thinking about it. It posed, at the time, fictional ethical and personal dilemmas that seem to be now coming to fruition. Would you subject someone you love for who they are and the way they are to a treatment that would change them, possibly only temporarily? Would you really want to know what they would be like if they had a higher intelligence? Would you be prepared for personality changes in this person? While it all sounds very tempting, I know that my answer would be an undeniable “no.” I have sometimes tried to think about what it would be like if my daughter didn’t have Down syndrome. It is always a brief thought that gets shut down and put out of my mind immediately. I can’t imagine what she would be like, and I honestly don’t want to. She is Samantha. She is my beautiful, smart, funny, precocious, stubborn, amazing daughter, just as she is. Anyone different in her place would be a stranger to me. Would I change some of the physical issues that affect many people with Ds? Certainly. I would love to remove heart defects and thyroid problems, celiac disease and early-onset dementia, leukemia and atlantoaxial instability. The list could go on. I would also love to remove some of the challenges society places in the way of people with disabilities, and create more awareness. But would I change her? Nope. Not even for a day.