Sunday, August 30, 2009

The World Needs Down Syndrome

Many may strongly disagree with the title of this post, but before anyone jumps to conclusions please allow me to explain a bit further. In the process of researching my upcoming book on Down syndrome, I have had the opportunity to speak to a number of families living with an individual diagnosed with DS. Perhaps surprisingly, family members of people with Down syndrome consistently describe their supposedly "disabled" child or sibling as being kind, friendly, honest, funny, and intensely concerned with the welfare of others. In my own contact with these individuals I have observed much of the same.

So why do most people believe that Down syndrome is something to be avoided at all costs? I believe the answer is twofold--first, most people don't really know anyone with Down syndrome. Second, throughout our lives we have been culturally conditioned to conform, fit in, be normal, be perfect. Therefore, our natural reaction to someone who appears different from the social norm is a feeling of discomfort, and it is that discomfort within ourselves that then manifests itself as pity for "that poor child." As a result, we come to believe that the solution is to prevent individuals who are different from entering the world in the first place, all the while assuring ourselves that "it's for the best."

The truth is, people with Down syndrome are not miserable. Certainly their lives are not perfect, nobody's is. For the most part, though, these individuals live in the moment. They delight in discovering and enjoying the best in themselves and others every day. Now tell me, why would we want to have fewer people like this in the world?

Tuesday, June 30, 2009

The Up Side of Down Syndrome

OK, so Down Syndrome really has nothing whatsoever to do with quantum physics, ghosts, or any of the other paranormal subjects I am prone to study and write about. Even so, I have begun writing a new book on the topic of Down Syndrome, for a couple of reasons.
First, I recently had the distinct pleasure of welcoming a delightful young lady with Down Syndrome into my home. She quickly became an integral part of our family and is a constant source of good humor, exuberance, and fun. My second reason for starting the book is a bit more serious. While skimming a recently published book on autism a few months ago, I stumbled upon this disturbing statistic: due to the wide availability of new and less invasive prenatal testing, 80-90% of all children with Down Syndrome are being aborted in the first trimester.

Initially I was sure the number had to be an exaggeration, but after further investigation I discovered the statistic was accurate. Largely due to outdated and inaccurate information about Down Syndrome, the majority of physicians are strongly recommending termination of these pregnancies, leaving many parents with what they feel is little choice in the matter. Most of what the general public knows about Down Syndrome is based on stereotypes, misinformation, and a lack of experience relating to individuals with intellectual disabilities. (By the way, the term "mental retardation" is being officially phased out as a medical diagnosis and is being replaced with "intellectual/developmental disability.")

The purpose of the book is to raise awareness of this alarming trend (with which we seem to be teetering dangerously close to the practice of eugenics,) and to dispel the common myths about Down Syndrome. Modern advances in health care are allowing most individuals with Down Syndrome to live longer, more productive lives than ever before. I hope to show that these individuals, once revered by some ancient cultures as being endowed with god-like qualities, are less of a burden on society than a good portion of our so-called "normal" population.

Wednesday, February 4, 2009

More years ago than I care to count, my life was profoundly affected by a low budget, independent student film called Billy Jack. I particularly recall, almost verbatim, the content of a speech made by the main character while he was apparently channeling the spirit of an ancient holy man known as Wovoka. In that instant, I connected with an idea that I suddenly realized had always resonated with me as truth, but that my Protestant religious upbringing had never allowed me to really believe until that moment:

Heaven is not out there. The other world is here.
Your people, my loved ones…there is a thin veil separating us from them.

Finally, an explanation that made sense. The thought of disembodied spirits floating around on clouds in some vague, unseen location in the sky never seemed logical to me. Not only that, but wouldn’t it be boring? I don’t know about you, but I don’t find the thought of “eternal rest” after death especially appealing. The idea that our spirits remain on earth, albeit on a different plane, seems an infinitely more interesting way to spend the afterlife. At least we could find ways to occupy ourselves, even if we need to haunt our loved ones for entertainment!
A thin veil. A curtain that some can see through easily and others cannot. But why? Why do some people, even while vigorously claiming not to believe in them, regularly see ghosts while others do not? That question alone seems intriguing enough to warrant further investigation.
In 2002, when I was researching my first book, Ghosts of Erie County, most of the individuals I interviewed had a great deal of difficulty discussing their experiences out of fear of ridicule. Some said they had only disclosed these experiences to close family members, or perhaps to no one at all. Several of the folks agreed to tell me their stories only if I promised not print their real name, place of business, or any other identifying information.
This reaction is certainly understandable. Historically, those who claim to have had an encounter with the unknown, whether it be ghosts, UFO’s, or any other being not thought to be of the “natural” world, have been met with accusations of insanity, involvement in witchcraft, or just plain weirdness. In reality, however, almost everyone I know has had at least some type of unexplainable experience. And happily, in the six or so years since my first book, I have discovered an exciting trend in the general acceptance of these phenomena. People today are significantly more open about their supernatural experiences. Evidence of this trend can be seen everywhere. On any given evening, you can surf your cable TV channels and find at least half a dozen programs focusing on ghost-hunting, UFO sightings, psychics, or simply “the unexplained.”
In fact, I believe we are on the verge of a universal spiritual renaissance, when those experiences formerly thought to be supernatural will all be found to be part of our natural world. It appears that human beings, especially those in the western world who have been stubbornly resistant to accepting ideas we cannot yet prove scientifically, are finally ready to take a hard look at the possibility that there is an entire unseen world around us just waiting to be discovered.