Janet Dafoe - The Whitney Plea

Forbin said:
I'm just thinking that the hand gesture could be more connected to his time in India than it is to Christian prayer.
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That could very well be it. But J's exploitation of this gesture is universal and I don't like it. My mistrust from the other place is tattooed in my brain, unfortunately.
 
Forbin said:
According to this article, Whitney studied Buddhism in India and Nepal. While there, he developed stomach pain and other GI symptoms. He came down with ME a couple of years later.

I mention this because, in India, the "prayer hands" gesture is called "Namaskar Mudra," where, combined with a slight bow, it is often used as a greeting. The term is the root of "namaste" which can be translated as "salutations to you," or "I bow to you." It's a gesture of deferential respect. I could see it being construed as the opening to an entreaty and akin to "please." When one prays to God, one is essentially saying "please," but saying "please" is not always a religious gesture.

I'm just thinking that the hand gesture could be more connected to his time in India than it is to Christian prayer.
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For me it doesn't matter whether it's Christian or some other kind of spiritual or just begging - it's not a gesture I would ever use in any context (unless momentarily when clapping my hands to express appreciation of a particularly good performance) and I don't want it used on my behalf.

Inara said:
I don't want that people link ME with cults
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Agreed.
 
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Inara said:
I am not sure if Francis Collins is so pro-religion
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If there's any religion in this scenario, it's Collins. He's overtly Christian, and that was part of his whole brand when he became head of NIH. He has written a book about faith and science. (I'm not religious but it is my opinion that a person of faith in his position might do well to be more charitable.)

With respect to people who have a distaste for the video, I also want to add that prayer hands is not the exclusive domain of religion (in the same way as the word "explicit" does not have the exclusive domain of "sexual" except by association,) it is useful to note when we are making conditioned associations that may have nothing to do with what is being communicated.

I see it as "heartfelt wish" in this case, and being non-religious but with a long background of asian philosophy and culture, have no problem with the gesture of respect and humble greeting that it is at its basis.

ETA and if it cracks the wall of NIH's resistance, I ain't gonna complain
 
In so far as the Davis/Dafoe's spiritual life is anything to do with us, and I don't think it is- freedom of belief etc-, I think they follow the Native American Indian Cherokee tradition.

If I remember correctly, Ron and Janet led a song from that tradition at the first #MillionsMissing demonstration, maybe in San Francisco. And I'm pretty sure someone said Ron played the drum rhythm for an annual Native American event they attended.

I think that visual symbol to Francis Collins is just an advocacy tool, but one that isn't well received by all. It didn't resonate with me but I respect other's choices if that is what they feel.

ETA: insertion of 'native' in line 2
 
arewenearlythereyet said:
I know I said I would shut up, and this will be the last message on the subject before I ignore the thread, but just for clarification, you are right this is speculation on my part. Here are the facts I used to make that assumption/assertion

  • This is an awareness campaign
  • The objective is to build a movement with visual devices and messages to attract sympathy for our plight and seek funding for more research
  • All marketing campaigns target specific groups of people with specific messages
  • Religion (Particulary Christians), is a very important part of USA election campaigning not like in the UK where it’s hardly ever mentioned. This is a large group to target activity at
  • MEAction have a lot of experience in appealing to target groups through their previous campaigns and this year was clearly strategic on a number of fronts
  • The leader of MEAction has studied politics and is more than aware of this approach
  • Janet Dafoe is a psycologist who will do anything to get funding for her husbands work and has manipulated patients using her sons condition to large platforms before

I am convinced that this is about deliberately portraying sick people in a certain way to get a message across to a certain group to get funding. And we know that whether it’s true and representative or not is a secondary concern for some people as long as they get the money. That’s fine if they want to do that ...and I’m sure a load of people will want to trust others to get on with it and just think about a mother and son relationship etc. That’s up to them and is totally fine by me.

It’s the manipulation of not attaching the video to the signature campaign that is the issue for me. That is what has really pissed me off.

Trouble is for me I don’t believe in God so praying to someone or even praying to be taken to heaven definitely does not appeal to me and I don’t think it would be viewed as anything but a religious sign by a lot of people outside the target group (and quite cultish). I would not have taken the risk of putting my real name associated with this had I known. The video really turns my stomach for a number of reasons.

This is not what I want my actual name and address to be associated with, so I will be opting out of any further activity with MEAction with the GDPR thing and spending my energy and donation money somewhere else (bio bank probably). I wasted a lot of time and effort on this so I don’t want to waste any more time on something that has clearly gone down a road of bad taste and misrepresentation....and poor manipulative marketing.

I’ve really had my say now so won’t be responding to tags or taking up any more time on the subject ..sorry
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Part of the issue for me with this plea is the fact it can be interpreted in so many ways, a lot of them bad it seems.

If the original message isn’t being communicated clearly then everyone’s individual interpretation is as valid as anyone else’s.

This is just a disaster.
 
I understand the concerns, but no petition/project will be perfect, and I've put my name to things that have had elements I'm really not happy with.

It can be difficult to constructively criticise more personal and emotional forms of advocacy. I've got to admit to feeling irritated with Janet for some of her earlier behaviour, and that possibly affecting my judgements. Reckon I'll just stay out of this one.
 
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I don't mean to pick nits, but this is not a British/American thing, this is a we-need-to-up-our-communications-game-if-we-are-to-be-a-united-patient-group thing.

There will never ever be 100% data accord between any two people let alone in a group. Having likes/dislikes is one thing; having the emotional maturity to recognise the rare moments in which it is useful to effectively express them is another.

I may have issues with Js actions in the past but that does not stop me from fully and totally appreciating that she and her family have done more for PwME than any other have ever done. And if we don't implode our movement by being selfish about our passing likes and dislikes, they are positioned to do a whole lot more. For me, that takes precedence and I focus on that, because it is of vastly greater importance to me and to many.

I really wish we'd all get our knickers out of their twist and see how we can contribute to each other, rather than tear one another to shreds.
 
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All my posts on this thread so far have been my personal views.

I am going to put my moderator's hat on now.

Please can members be mindful of the rule:

Rule 1: No personal attacks or public accusations
While vigorous discourse and even disagreement is to be expected on a forum, it is not appropriate to insult other forum members or attack them on the basis of their characteristics or motivations. Public accusations against other forum members are also not permitted, as they distract from the discussion and can escalate a situation. Disagreement should focus upon the arguments made, not upon the person making those arguments.
 
The last couple of pages of this thread have been edited heavily to remove a problematic phrase and reactions. I'm sorry to those of you who have had thoughtful comments deleted or edited.

This thread is now open again.

Speaking honestly about advocacy can help make future advocacy stronger. However, a divided community makes our advocacy weaker. It's a difficult balance.

Any further posts in this thread that breach Rule 1 in particular will be deleted.
 
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