Wednesday, June 8, 2016

Moving Mountains

There is an old Chinese story about a man who wanted to move a mountain.Well, actually he wanted TWO mountains moved to improve the quality of his life.  You can read the longer version here but the essence is summed up in this saying attributed to Confucius:   "The man who moves a mountain begins by carrying away small stones.” 

The man was old, somewhere around 90, and folks laughed at his silly plan, but he persisted - and that is the basic lesson: Persistence will be rewarded.  Someday.  But maybe not in your lifetime.  Persist anyhow. 

I have been chipping away at my personal mountain for almost 25 years now, enlisting all the help I can find along the way, feeling weary at times, but determined to do all I can to eliminate the opposition to what has been by far the most significant reality of my professional life. 

Back in 1992, when I first learned about - and tried - Facilitated Communication, I joined a rapidly growing group of enthusiastic parents and professionals who thought the field of disabilities had been changed forever. Long-standing beliefs about folks who have limited (or no) oral speech were challenged as never before, and around the world silent voices were beginning to be heard - thanks to an exciting new approach that involved providing access to spelling or typing what they might be thinking.

It is painful for me to go back any farther than that, but the truth is that we - parents and professionals alike - hadn't given these individuals much credit.  We actually thought they might not be capable of learning.  We acted as though a person who is unable to talk, or pick up a pen and write, is probably not doing much in the way of thinking either. We thought that an IQ score of 30, for instance, or a mental age of 24 months, actually told us something about a person's ability to learn.  We were so very wrong.

I have been chipping away at mountains ever since, telling my stories to anyone willing to listen, writing a book about my early experiences (SEE US SMART!), and doing all I can to speak for those unable to speak for themselves who have begged me to share their good news.  Some of these amazing folks all across the globe have become independent at typing, many give presentations at conferences, and some have authored books or produced videos that tell their personal stories.

And yet, the mountains stand tall.

A recent article in Slate magazine was particularly vicious (and thorough!) in attacking Facilitated Communication (click here). Does it pay to write a rebuttal?  Do we just dig in our heels and carry on?

I knew from the beginning that I was not alone. There were professionals out there trying to get funding for research projects to better understand and support what we were experiencing.  The funding wasn't there for the most part, and for those fortunate enough to fund a project on their own, the respected journals had no interest in publishing a study that was supportive of Facilitated Communication.  A wise and respected leader in the field of autism tried to reassure us that the success stories would ultimately convince people that FC is both valid and helpful.  But if you enter the term "Facilitated Communication" into a Google search, you will get a sense of just how formidable our mountains are.

Wikipedia calls FC "a discredited technique."  The Skeptic's Dictionary refers to the method as a technique that "allegedly allows" communication, boldly stating that, "Controlled tests demonstrate conclusively that the only one doing the communication is the facilitator."  There are frequent references to the PBS Frontline show or the 20/20 segment which aired back in 1993 or so.  Terms such as "pseudoscience" and "controversy" show up frequently, as part of the description of "the fad that will not die."  Can you blame families or school systems if they shy away from even giving the method a try?

Our mountain consists of doubt, skepticism, warnings of danger, and outright rejection.  We keep our shovels ever ready, trying to get the word out that a simple letter board truly can change a person's life. We enlist the help of all who have experienced the pull of a silent person's hand toward a keyboard to spell out for the first time ever a messages such as, "tell mom and dad I love them."  

It gets discouraging. The mountain seems to be winning.  I have personally accepted that the paradigm shift I dream about might not happen until after I am gone.  And in the meantime, I am privileged to spend time regularly with some very amazing people who have found a voice and have a lot to say!  Together we keep chipping away.