Friday, May 28, 2010

Resistance - # 3

Resistance: opposition of some force, thing, etc. to another or others. (Webster's New World Dictionary).

So, why is there so much resistance to the use of Facilitated Communication?

This question has been with me for over 15 years now, giving me lots of time to come up with possible answers. But first, let's talk a little about just where the resistance comes from.

I have dealt with school staff - mostly administrators and fellow teachers - who overtly or covertly have opposed what I was doing in my classroom. I have learned that highly respected medical (and other professional) personnel are quite vocal in their rejection of FC. Everyone involved with FC in any way was certainly impacted by the negative media blitz that took place back in 1993-94. The repercussions continue to this day.

For the parents and families, it's been a tremendous struggle. Most started out doubting whether this particular method of communication (or any other) might be of any help to their child. Most were afraid to even open themselves to the possibility that their child - often considered to be "severely" cognitively impaired - might actually be intelligent, that there might be a thinking, caring, fully aware person locked inside the silent (maybe screaming) physical body. If their child was then successful using FC, there followed a confusing mixture of emotions - joy, regret, guilt, hope, more doubt, and on and on. More likely than not, these families also met with skepticism from their relatives, neighbors, doctors and others. As resistance grew in the ranks of the "experts" - fueled by loud criticism coming from the media - many parents drew back and even gave up. Only a few were strong enough to hang in there and continue to support their child against the rising tide.

I personally felt the greatest resistance within the professionals who make up the special education community. Perhaps because we have been taught to think about DIS-ability, and our training is largely focused on remediating deficits, we are programmed to have low expectations of our students. Sure we want what is best for them, and we want them to reach their full potential, but something holds us back from even considering that we might be wrong in our best guess as to what that potential might be. We get caught up in psychological evaluations, developmental checklists, and IQ scores, thinking these measures really describe the child and tell us how or what to teach.

Accepting Facilitated Communication as real and valid means admitting we were wrong - about so many things! - and some people just can't do that. It's a humbling experience to apologize to a former student that we vastly underestimated their abilities, but so very liberating and exciting to do just that and then move forward.

But making such a significant change isn't easy. Many families find it difficult, or even impossible, to change the way they interact with their nonspeaking child. Over the years, they have established patterns of family life that work for them. When I as the teacher present the possibility that their child might in fact understand and know a whole lot more than anyone has previously thought - well, maybe you can imagine what an impact this might have. It can go either way: some families are thrilled and the child's life is forever changed; others give the possibilities some thought, maybe try FC themselves, but just can't make the leap to a new way of thinking. All too often, friends, family or professionals step in here and warn such parents that FC has not been "proven" to be valid, or worse yet, is surely a hoax, preying on parents who want so badly to deny their child's disability that they will believe anything.

Resistance to FC happens because it's a huge paradigm shift in thinking, and change is never easy. But there are other possible contributing factors as well. School districts are afraid of additional costs that might result if facilitators are needed for each student. (Truth is - most of the students I worked with required full-time adult support for other reasons; there is no reason those adults couldn't also be trained to use FC - and so much to gain if the child is then able to become an active participant in the regular education curriculum). We tend to think in the short-term, unfortunately, and not look ahead to the possibility that this child might need a whole lot LESS in the way of support as an adult if they receive an appropriate education in their younger years. A lifetime of custodial care is very expensive, after all.

I have to also include here two subjects that are seldom discussed. In some cases where a nonverbal child is finally given an effective means of communication we find that what they really want to tell us is not at all pleasant. Some children, and adults, when introduced to FC, started reporting instances of mistreatment or abuse. Without going into great detail about all the chaos this has caused, I ask you to consider the reality. We know many kids are abused, we know many reports of abuse turn out to be untrue, we know these situations are always complex, and always unpleasant. Add to that the sad reality that a child who is unable to speak, who likely presents serious challenges behaviorally, and who has the need for many different adult caretakers in their lifetime, is a particularly vulnerable target for a potential abuser. It's a sure recipe for possible abuse. And unfortunately, it is all too easy to make sure we never have to deal with such a situation - if we don't allow the use of FC.

Some children, and adults, have surprised us in a very different way when they finally are given a way to communicate their thoughts. Their rich inner life includes deeply spiritual thoughts - often far beyond anything we might have thought possible. Poetry is common, along with opinions about God, heaven, the human condition, concerns for the planet - and the list goes on. Most families find this exciting, but some are overwhelmed or afraid, and the resistance sets in.

My personal feeling is that the single most significant factor in the resistance is an inability to consider the possibilities if what is being said via FC is real. To many people it is just not possible that these individuals could be so intelligent and capable. It goes against everything we've learned, everything we've taught - and just about everything we've done in the name of "helping" these people. We've been so very wrong, and we have to change. That's a hard thing to do. It's easier to resist.


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