Demanding, Not Asking, To Be Valued

A research journal – Research and Practice for Persons With Severe Disabilities (RPSD) – recently published a special issue on FC (Facilitated Communication).

RPSD is a TASH publication. In the world of social media, many of us, typists and supporters, decided to sign a letter to the TASH leadership.
We were concerned that, due to the heavily unbalanced view of FC as a “not evidence based” method of communication in the issue, TASH would change its position and withdraw its support for FC.

It turns out that TASH does not have a Position, but rather a Resolution regarding communication choices: TASH Resolution on the Right to Communicate. I still don’t understand the difference, and I have a problem with the lack of clarity of support for Facilitated Communication.

I will not get into the false controversy surrounding FC either. You can read my thoughts here (http://ollibean.com/2014/07/10/i-dont-want-your-protection/)
Instead, I want to focus on the problematic TASH response to our concerns.

Here’s the TASH letter: The Continued Debate about Facilitated Communication: A Response from TASH’s Executive Director and President of the TASH Board.

The first problem is not the letter itself, but the original issue of the RSPD. It called for researchers to submit articles in favor of, or opposed to, FC. It is inaccessible. There are not many of us in academia. Our stories and experiences might be dismissed as “just anecdotes” but this how we experience our progress, the changes FC brings to our lives, the day-to-day message-passing that we don’t need to record, report or have validated by every single Very Important People, usually privileged, non-disabled people, who call themselves “experts”.

I could not read the journal. For many reasons, I am not a TASH member, and I believe the journal is only available to members. I rely and trust the reports I’ve got about the articles though. I will make a guess (in my experience with these types of articles, I am likely correct) that the skeptics wrote the articles based in data from other skeptics, and none of them has probably never met the subjects of the research.

And there are plain lies based on bias (facilitator ALWAYS leads FC user – ALL facilitators, ALL THE TIME). TASH should have condemned the RSPD right there. Yes, there are unethical facilitators, as facilitators are human. But unless TASH believes everyone who is not a facilitator has never, ever cheated, lied or deceived in any way, the bias is not only from the researchers. It is also from TASH.

Also I am pretty sure the skeptics ignored users who became independent typists.

My “research” is my everyday. I don’t collect data after each word I type.

By not challenging the editors’ reason for publishing names of FC users being criticized, TASH shows ableism and dismissal. While it is true that the ones mentioned by name are in the “public domain”, I believe they were neither interviewed by the researchers, nor consulted before publication. And “not meant to offend” is not enough. It is still disrespectful.

Disabled people viewed simply as objects of study, without a chance to be heard = ableism.

According to TASH, the researchers who had the articles published are “well established” and “nationally recognized leaders”, while we, FC users and supporters, are “advocates”. Don’t be so certain that many successful academic figures don’t support us. Don’t assume that there aren’t many brilliant minds among us.

No. I don’t accept the double standard. I can only speak for myself and I am more than an advocate. Not that this matters. Doesn’t TASH value all disabled people? Why the need to emphasize the academic position of FC critics, as if this gives them the credibility that apparently cannot be granted to us? Letters after their names? I do have some too: B.A.D.A.S.S. This is more than only a joke.

Then there is the gaslighting: TASH wants “both sides” to acknowledge the risk of facilitator not allowing user to be the true author of the typed words – Something one of the articles already decided ALWAYS happens, ALL THE TIME, EVERY facilitator does it.

TASH could simply have researched the Institute on Communication and Inclusion (ICI) Best Practices. Every FC user and every facilitator trained by the Institute’s method has to follow the Best Practices. We are very serious about it. Apparently, FC users are still seen as people without self-determination.

The problem is not that “both sides” need to acknowledge the risks mentioned. “Our” side already does that. We have been doing that for a while now. It is “the other side” that needs to come down from their self-righteous pedestal and start learning about FC from us, the real experts.

More gaslighting: our (FC users) position is not “dug in”. We are living our lives. FC is a big part of it. For me, it is probably the reason why I can be a productive activist. The ones who are putting their heads in the ground and refusing to acknowledge the method as it is followed by most of us are the skeptics ones, the Famous Researchers, the Nationally Recognized Important People.

Don’t tell me that living my life the way I choose is “too inflexible” and that my arguments are “dug in”. This is disrespectful.

Innacuracies: the success of facilitated communication is not “limited”. The view of the skeptics is limited because they refuse to acknowledge our stories as valid. As I said, my day-to-day is full of the kind of “proof” the “Well Established” researchers want but I don’t spend my day collecting data for them. They wouldn’t recognize that anyway.

But the worse part of the TASH letter is the last paragraph. TASH states that it does not take a position about FC because of the diversity in its membership.

Why is this the worst part? First, TASH is not diverse. The majority is white, non-disabled. Second, by not taking a position on FC, TASH is making sure it does not upset the privileged majority and the Very Important, Well Established, Nationally Recognized “experts”. The message is: non-speaking disabled people who choose to communicate (or can only communicate) using FC are not as important as the ones mentioned above.

Organizations need to take a stand. Either they support people they claim to support, or they don’t. TASH, so far, falls in the latter category. When I read that last paragraph, this is what I read:

“TASH does not have a position on FC because our privileged members might feel uncomfortable if we start supporting typists that need any form of physical support, even if it is a light touch on the shoulder- or if we recognize the ones who no longer need any form of physical contact. We might not attract all the Famous Experts. The FC users and the facilitators will not be happy about it but that’s ok. They will be happy to be a member of our awesome organization anyway, they will feel lucky to come to our conferences and grateful that they can present and tell their stories. Let’s just keep things the way they are. Let’s not take a stand, especially when we can upset so many Famous People. The FC users will get over it and they should thank us for allowing them to speak up, even if we are not really listening.”

No TASH. I am not grateful, nor thankful, I don’t feel lucky and I will not get over it. I feel devalued and disrespected.

I don’t want your crumbles of acceptance.


"We Cannot Stop" by Amy SequenziaAbout the Author, Amy Sequenzia.

 

3 thoughts on “Demanding, Not Asking, To Be Valued”

  1. Amy, your message is valid and timely. It is time for TASH leadership to stop putting its head in the sand. They are truly devaluing autistics and others who type to communicate. Many critics indeed rely upon repeating the faculty conclusions of other critics. By even accepting this pseudo research, TASH perpetuates the kind of discrimination which limits people with disabilities–discriminsation they have historically claimed to challenge.

  2. Yes, you are correct in your suspicions regarding ‘tash’ – and organizations like them. (been reading ‘Slavery and Social Death’ by Patterson – it speaks of the same concerns you describe…)

    Especially the part about autists of all types being *used* (exploited) in the manner of ‘objectified tools’. In this, the state of autists in toto resembles that found in Patterson’s description of Slaves.

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