Tag Archives: silencing

“A Letter To the World” ~ By Emma

                     “A Letter To The World

“I want to tell you that I am capable.  Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.

“Plea-ing to the world, I ask that those who are not able to restrain their doubts, at least not mute voices like mine.

“Deciding stupidity bolsters egos while crushing lives with angry words disguised as kindness.

“They say hope is cruel for the hopeless, but maybe they are the cruel ones.”

Emma wrote this in response to my question, “What do you want to learn about?” (I gave her a number of choices ranging from people like Joan of Arc and Eleanor Roosevelt to geography, history, literature, creative writing or current affairs) “…or would you like to talk about something else?”  Emma wrote, “I want to talk about autism.”  When I asked her what, specifically, she wanted to discuss, she wrote the above letter.

*For all who would like to share Emma’s words with your friends and followers – we ask that you quote a sentence or two with a link back to this blog, and not all her words.  Thank you so much for your support, encouragement and enthusiasm.

Emma ~ 2014

Emma ~ 2014

Another Way to Silence – Shame

Shame has a long and twisted history.   Over the centuries it has been used to coerce, to convert, to make people compliant, to keep people in line.  I’m not sure there is a “healthy” aspect to feeling shame, though I may be in the minority here as this article states, “Embarrassment and shame are important in the regulation of social behavior. Both emotions tend to occur when rules have been violated.”  But what if those “rules” are not actually in place for the good of ALL?  What if those societal “rules” serve the majority, but actually are a disservice to a minority?

The argument that without shame we would all resort to violent, unethical and amoral behavior is one I don’t agree with.  Plenty of people behave badly who are filled with shame, often as a direct result of the burden of shame they live with, but usually those who feel tremendous shame hurt themselves more often.  I question how often shame, actually motivates us to respond in positive and constructive ways.  In most cases, it seems to me, shame is less a controller of bad behavior and more an instigator of self-betrayal and self harm.

Shame is what people feel who have been on the receiving end of violence, violations, betrayal and abuse.  Numerous studies have linked shame with depression, suicidal ideation, post-traumatic stress, rape and incest.  The very people who could actually use a little shame appear to be without, while those they victimize carry the vast portion of it.  In these cases, shame is the emotional equivalent to metal restraints, intended to keep people in check, compliant and silent, particularly when used on children or a group of people who are already in the minority.

Many of the methods used, with supposedly great success, on Autistic children, has created a population of adults who feel tremendous shame, lack self-esteem, feel inferior, have anxiety, live with ongoing debilitating stress, all of which exacerbates the very “behaviors” these therapies attempted to remove.   The unending destructive cycle shame creates, does nothing positive for anyone, least of all our children.

I believe shame keeps us from flourishing.  It causes us to doubt, to become hyper aware, self-critical of our desires, our urges, our instincts.  Shame makes us feel incapable, unable, frozen and of little value.  From my perspective, shame is far more damaging than it is “healthy”.  Shame is exactly what I do not want my children feeling.  Ever.  In fact, shame is a warning sign that something has been taught improperly.  If either of my children exhibit shame about something, it is a signal that more needs to be discussed.

I do not want my children behaving in a certain way because they feel shame if they don’t.  I want my children behaving in a kind and loving manner towards themselves and others because they have learned it feels good to do so, because they have come to see that self-seeking, hurting others, gossip, betrayal and acts motivated by resentment and vindictiveness lead to more harm and like-minded behavior. All behavior is infectious.  All behaviors, good or bad can provoke others to do the same.  I am not naïve enough to believe it’s a given, but I do know that I like myself far more when I am kind and being of service than when I’m not.

I hope my children are learning the antithesis of shame and silent compliance, which is a strong sense of self-worth.  I want them to know now, while they are still so young, the beauty and joy of a healthy sense of self, that wonderful feeling of liking who they are as human beings, that feeling we are born with, but that over time can be taken from us.  I want my children to be in touch with those wonderful feelings of curiosity, awe and joy, so that when they make mistakes they aren’t destroyed by them, overwhelmed with shame and become silent.  I want to bolster them up, reassure them, encourage them, support them, so one day, they will be able to give hope and encouragement to someone else who may desperately need it.

Emma – three years old – 2005 

2005

Non-Speaking People Who Type

This is a topic I would prefer not to discuss, but a few things happened recently that make it difficult not to write about this.  So… here goes…

Facilitated communication has had a bumpy history.  It began in the ’70’s and has been lurching along ever since.  There have been studies done, both proving it’s validity and others proving it as an invalid method of aiding those who do not speak to communicate.  This post is not about whether FC is valid.  Those who do not believe in FC’s ability to help those who cannot speak will not be swayed by anything I write here.  For those who are interested in reading more about FC and its history you can do so by reading this and this and the many links embedded in these posts.

What I will write about however, is all those FC users who have gone on to type independently.  And here is where things get really interesting.  Those same people who are convinced FC is all a mirage, a kind of non-speaking, Autistic version of an elaborate magic show, remain convinced the non-speaking person who now types independently is not really doing so.  Those people continue to insist it is a “hoax” despite witnessing, some even after seeing in real life, a non-speaking person type on their own.

Just to be clear, I am not writing about hand over hand or a hand on a forearm assistance.  I am writing about the many people who began typing with a facilitator, but who now type independently.  By independently I am referring to those who may still need a trusted person standing nearby.   Some type with another person’s hand placed on the middle of their back, others may need a hand gently placed on their shoulder.  Yet these same people who speak out forcefully, often aggressively to any who dare write about someone who is non-speaking and writing of their experiences, say even a hand on the back proves these non-speakers cannot and do not type their own words.  They insist that they are merely puppets doing the bidding of the person who is physically nearby.

What fascinates me about this is that these same people who insist it’s all a “hoax” (this is the word they usually use) would rather believe a person can move a seated, non-speaking person’s hand to hit specific keys on a keyboard by virtue of their physical presence, rather than entertain the notion that this non-speaking person, may in fact, be typing their own words.  One such person commenting on a blog post about something unrelated to FC, but that had a link to Barb Rentenbach’s book, I Might Be You, wrote, ” I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters.”  Not to quibble, but seriously?  So this is like some sort of typed ventriloquism?  Touch someone’s back and direct them to write thoughts that are not their own?

I urge any of you who believe this is possible to try doing it… place your hand on another’s shoulder or the middle of their back and see if you are able to control what that person then types.  And while you’re at it, try standing next to the person and psychically urge them to write something.  It seems incredible, but there are those who not only believe this to be the case, but they then demand “proof” that this person is typing independently, despite the fact that they’ve just been given the very “proof” they asked for.  Evidently “proof” is subjective.

What bothers me about all of this is that those who are typing to communicate are doing so because they have no other means.  This is not a “choice” that’s being made.  The people who continue to insist they are a “hoax”, that it’s all a “mirage”, that they are being “controlled” are taking away the only way they can communicate.  They are silencing them.  They counter this assertion by saying that on the contrary, they are actually “advocating” for those who do not speak and are protecting those who are at the mercy of a facilitator who is putting words into another’s mouth.  Yet, even when confronted with a non-speaking person’s typed words, typed without anyone’s hand on their arm, they continue to insist the very presence of this other person is all it takes.  The transference of perceived power to cover up their dehumanization of another is convoluted.

If you google “Carly Fleischmann” the third entry that comes up is “Carly Fleischmann fake”.  Sadly Carly is not alone when it comes to such beliefs.  There is a long and horrible history of non-speaking people being discounted and effectively silenced by those who believe they cannot possibly be intelligent, insightful beings.  There are those who will dismiss people like Carly as an anomaly, a “prodigy” and thereby ignore the years of effort it has taken her to get to where she now is, or they conclude she is a “fake”.  There is nothing new about the silencing of human beings deemed inferior.  (Read Inventing the Feeble Mind by James W. Trent, Jr.)  The ingrained prejudices and dehumanization of Autistic people continues.

I want to end with one last thought, which is this – if you found yourself unable to speak, but could type to communicate, yet when you did so, people doubted the validity of your words, accused you of not actually writing what you’d so painstakingly typed, what would you do?  How would you respond?  How would you fight back?  Could you fight back?  Restraints come in many forms, but all are effective.

As Barb Rentenbach writes, “I might be you.”  For those who doubt that sentence is her own, you better hope those words are wrong.

Barb types with Lois’s hand on her back as Emma twirls her string – April 2013

Barb types