Janet Dafoe - The Whitney Plea

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.

 

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.

Agreed.

 

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

 

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.

 

[edited]

Why is it a problem for people to express their opinion on the video compilation sent to Francis Collins? Both positive and negative?

Discussion can help us make better advocacy choices in the future and that benefits us all.

 

This isn't an episode of 'The Walton's'.

So long as we follow the forum rules we can disagree.

When people are attacked for have a different opinion and some people won't let it go that becomes harassment.

 

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.