Letter to ASHA

Dear Board of Directors, Ethics Committee, and Members-At-Large –

I am writing today regarding the proposed statements condemning Facilitated Communication (FC) and Rapid Prompting Method (RPM).

I am a 15 year old non-speaking individual.  For the first 12 years of my life all my thoughts were held in my head with no way to express them.  Despite years of therapy including appointments with Speech and Language Pathologists, I have never gotten past being able to express basic needs like food, drink, or washroom with my voice.  I am a diligent worker and my parents poured money, time, and hours of effort into their mission to unlock my self-expression.  This just to let you know that they, and I, were not messing around.

It was not until I was taught the motor control required to point to letters on an alphabet board (and later keyboard) that I could share my thoughts, feelings, emotions, and just how hilarious I am.  My parents no longer needed to guess what was up when my body was dysregulated, I could tell them.  We can now work together to help me regulate and accomplish my dreams and goals in life.  To this day I am still always surprising them with my witty responses and what my needs for regulation are.  Trust me that my main communication partner is not that funny or intuitive, she could not be influencing my output as your statement suggests (Sorry Mom, just telling it like it is.)  While my mom is very smart she has, on more than one occasion, had to look up words that I used to understand them in the context of my writing.  She eventually just gave up and believes me, because I am always right.

Having access to communication and full self-expression has transformed my life.  From hours of stimming and meaningless activities a day, to a life filled with deep relationships (including the most amazing girlfriend on the planet) and great purposeful motor practice to hone my skills and become an autonomous and more productive member of society.  Having my self-expression questioned by those who have no experience working successfully with my type of autism and apraxia is frankly paramount to slander.  Freedom of expression is a basic and legal human right.

Should this position statement pass (which it has in my country) it will not immediately affect me.  You see, I am currently home-schooled and have no oversight to prove myself to.  However, my peers do not always have the luxury of this option and will be denied access to a way they can demonstrate their acquisition of knowledge and will be relegated to being essentially babysat versus educated.  This is counter to your vision statement – “Making effective communication, a human right, accessible and achievable for all.”

I can only hope that ASHA at-large will not let the biased and inexperienced create an epidemic of trapped voices.  The Ad Hoc Committee proposing these statements has refused to consider evidence from users or other members of ASHA with experience with these methods of communication.   The members of the committee have also been known to publicly make slanderous disparaging remarks about these methods of communication and even some individuals who use them.  I would not call this unbiased.

I encourage you to retract these statements, and issue a formal apology to the communities using these forms of communication.  The damage of these statements has already effected my peers .  You are seen as an authority and should thus be using extreme care and ensuring fair evaluation of methodologies before releasing publicly.

One more thing, I appreciate that you are trying to look out for our best interests.  However, doing that without our input makes zero sense.  We are sentient beings capable of self-determination and great contributions to society.  You would be serving our population and society as a whole to empower our voices to be heard and strongly believed.

Yours passionately,
Jordyn Pallett

(The proposed position statements on FC and RPM from the American Speech-and-Language Hearing Association can be found at – 

The position statement from the Speech-Language and Audiology Canada (SAC) can be found here.

For those reading this blog, and wanting to join the campaign for communication rights, please email jrj@pallettcorner.net for guidance on how to take effective action. )

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9 thoughts on “Letter to ASHA

    1. Just because I love my U.S. peeps. And because making Elliot’s life fuller and richer is always what this BFF wants. And because I know if ASHA recants and apologizes, it is a blow for freedom here. I did not know about the SAC position until now or I would have been vocal prior to its ratification.

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  1. Hi, Jordyn,

    After reading your communication, I followed the links you enclosed and expressed my dissatisfaction with the proposed policy changes. (Or, at least with the first one.)

    Here’s my final comment to them – all of this spurred by your authentic and insightful email:

    “This committee is making decisions that impact the lives of the organization’s clientele. Anything less than a full, open and honest discussion in public forums regarding these proposed changes does them a disservice.”

    Now I will go and read the other one….

    Richard

    Richard Lang | “whatever it takes” | Cell: 415-378-3552

    Like

  2. Amy

    Very powerfully stated Jordyn. I have sent my messages as well. I hope they will take the time to actually talk to people like you. There are so many who use this method – their blindness is infuriating.

    Like

  3. Robbie

    I am sure the world will know all you have done, sharing thoughts and likes. You gained many friends world wide liking you no different than anyone who normal. Like everyone else your age explore love of girlfriend.

    Like

  4. Pingback: Open Letter to ASHA - Dare to Listen

  5. Pingback: A Letter to ASHA

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