Janet Dafoe - The Whitney Plea

I just searched youtube for millions missing videos from yesterday, and this symbol popped up again, and gave me that same uneasy feeling.

I’m fascinated why its creating a negative reaction in many of us. Not just us as sufferers but carers alike.

As others have mentioned, i think it might be linked to the religious and/or begging undertone.

Millions missing day for me is about fighting for our rights from a place of strength despite our weakness, not begging for help.

Just showed the youtube video to my partner saying, ‘what do you think of this video?’

He just looked confused, and said ‘i have no idea what i’m looking at’ i then explained its an ME message and asked what he thinks it means. He said, ‘oh! In that case... no, i still have no idea what i’m looking at, but i don’t like it’

Its worrying me that a symbol that creates such a negative response could potentially take off and become viral.

 

In the video Janet says "we have our own code", and in their code the hands clasped like that mean "please" or "begging".

If we want to talk about sign language, that gesture seems to already have been assigned to "pray" in the land of Janet Dafoe and Francis Collins (US sign language).

http://asluniversity.com/asl101/pages-signs/p/pray.htm

"Please" is a different sign altogether:

http://www.lifeprint.com/asl101/pages-signs/p/please.htm

The European sign for please is more like the pray sign, but in that the hands move apart and together sideways.

No idea what the hand going up to the sky means in sign language, but maybe someone had better find out? And if we're going to make this a sign language / prejudice thing, let's go the whole hog and talk about cultural appropriation.

 

I skimmed hundreds and hundreds of picture-messages tagged #MillionsMissing on Twitter yesterday, selecting the most interesting to post here on the forum, and every so often I came across one of these 'Whitney gesture' videos done by a patient in their home (often when they were sitting up in bed).

Even though I'd seen Janet's explanatory video before I saw the patients' videos on Twitter, I found it impossible not to read the signing as the patients praying to their god and expressing a wish to go to heaven, because the praying hands establish 'religion' and the upward gesture then gets read as 'heaven'. What it felt like, watching one such video after another, was that I was observing some sort of cult of patients expressing their wish to die.

I don't like to criticise a well-meant suggestion or other patients' attempts to advocate for this disease but each video really jarred me when I saw it. I don't think these gestures serve us well, in a world where we already have to fight to be seen as sane. I really hope they don't catch on and that next year, we don't see them again.

My sincere apologies to Whitney and his family and to those suggesting/doing the gesture. I share with you the sentiment that you were hoping to express. It didn't occur to me, when I first saw Janet's video how the whole thing might come across without any explanatory context and I can understand why it seemed like a good idea.

Perhaps, if a gesture on video seems a good idea, people could put their heads together and come up with something unambiguous (in universally understood gestures, if there are such things). I realise that not everyone has the energy to make a placard to hold up.

 

The problem is that gestures (even sign language) vary and it can be easy to get badly wrong.

A simple example is . Do these signs to someone in Argentina, Brazil, Turkey and Greece and they'll have reason to punch you in the face. In the Middle East the evil eye.

Doing a gesture that we think means 'up' or 'yes' in other cultures means we would like to stick that finger or thumb somewhere.

An amusing article about the problem here

I don't really have a solution except maybe a graphic icon(s).

 

In that case, we might be better off just with placards.

 

Thinking about how this could be used in a clearer and more inclusive way across the world regardless of religious beliefs and devoid of cultural faux pas, I’ve put my dusty marketing comms hat on.

Our objectives seems clear: reach as many every day people to highlight injustice in medical care and demand more research funding for ME

At the same time allow all ME sufferers regardless of levels of disability to participate if they want to. Campaigns should be directed at government funding not charitable donations to particular organisations. This is more akin to a civil rights movement not a campaign for donations.

The millions missing campaign does this effectively with the shoes but I agree that we need something that evolves from this and is easy to do for all PWME including those with limited energy and restrictions. This year it has been well organised with materials that are country specific. Mobilising social media has been ok but could be improved for next year.

The theme this year is “can you see me now”. I think what would be more effective than a difficult to understand symbol would be to post a face behind the shoes in a clear way using say 5 words to spell out demands

Eg. Help me live my life

On the scrap heap, see me

More funding equality for ME

Having a photo, message (in whatever language) with ideas given for people cognitively challenged to pick from would still be powerful. I would imagine an online template could be set up to ensure continuity of branding using fonts and spacing etc and framing for the photograph. It could be called “5 words” and be linked to changing themes each year. This would allow the flexibility for people to make it individual and puts a human face attached to the words.

Just an idea, whatever we do needs to be simple, clear and inclusive and not associated to any political persuasion, religious beliefs or affiliated/linked to any specific organisation.

At the end of the day we want a lot of money and this needs to be government funding so being neutral in terms of what researcher gets it is important. Who gets the funding is a different campaign to getting the money in the first place.

 

Hand gestures has different meaning in different cultures.

The Corna


In USA it means 'rock on', Buddism and Hinduism it dispels evil, the Mediterranean it mean 'your wife is cheating on you'.

A-OK



USA it means 'great', 'fine', France, Belgium 'zero', 'worthless', Japan 'money'.

The Moutza



Western world 'waving', 'talk to the hand', 'let me stop you there', Greece 'slang', Pakistan and parts of Africa 'insulting meaning'.

And then there are these that can get you into of sorts of trouble depending on where you live.

 

<sigh> MEAction have decided to send it Francis Collins along with the petition.
https://www.meaction.net/2018/05/25/thousands-sign-letter-to-francis-collins/

Facebook post

Code:

https://www.facebook.com/MEActNet/videos/2106237822991946/

If I'd have known that the two would have been connected in this way I wouldn't have signed the petition, or at least withdrawn my name. @JaimeS / @JenB is it still possible to take my name off the petition?

 

If they don't reply on here will you let us know @Andy?

I'm not happy with this either.

 

I was among those with serious reservations regarding the content and possible misinterpretation of the “Whitney Plea” posted at the beginning of this thread. Yet, I think MEAction have created a moving piece of advocacy using portions of Janet’s original video together with content involving other patients, words from @JenB , footage of Millions Missing protests, and background music.

I particularly “teared up” at Jen’s comment: “I am young now”. Because, approaching 30 years with ME this October I’m not young, and like the rest of us, I’ll never get the lost opportunities back.

The “it” (video) sent to Francis Collins along with the petition is not what we originally saw. I encourage members to watch the video linked in @Andy ’s post above before making their own opinions.

Edited to clarify what I meant by the “it” — the entire MEAction video, not just the gesture.

 

I would also like my name removed if it’s going to have my name associated with “the plea”. In fact it does MEAction no favours being so partisan when it comes to particular researchers

Edit: just watched the video and the whole thing sickens me that we are begging and using Christian symbolism I am absolutely furious that my name has been used in this way and I might say this must have been decided to use this begging device before I signed..they just withheld that key part of the campaign before gathering the signatures ...very manipulative.

I am withdrawing all support for this and anything to do with Meaction ...not in my name

 

There should be clarity about what a signatory is endorsing before, not after, petition delivery.

I would add that I'm not at all clear that including a clip of Francis Collins singing and playing guitar during Jen Brea's voice over "..and every day that you do nothing, I am losing my life.." in the video sent to Francis Collins is going to increase Francis Collins' receptivity to a petition addressed to him, or the plight of pwME in general.

 

Well, to clarify, the it I meant was just the gesture, which it too quasi-religious and/or a plea for death for me to be comfortable with. But certainly I would encourage everyone to make their own minds up.

In general, I'm in agreement with this sentiment, BUT my opinion is that it means that all the other research groups need to up their publicity/outreach efforts to match OMF's (and Griffith's/NCNED's while we are on the subject). My assumption is that the vast majority of #MEActions efforts comes from volunteers, most of them likely ill, so if there is a research organisation, such as OMF, that helps them achieve their goals that much more easily then they are going to work with them, and therefore they then may look like they are being partisan.

 

I also had some reservations originally but find that what was sent was much more contextually powerful, clear, and meaningful.

I agree with @MsUnderstood that it was a fine piece of messaging, and wove together the strongest aspects of the personal and the political in a skillful way.

I also doubt anyone is going to comb through the signatories and make a note of who is "endorsing" the message.

And finally, for those who feel squidgy about religious associations with prayer hands, it's also a universal symbol of respect, predating Christianity by many thousands of years.

 

Well they clearly are partisan and are using donation money to be partisan. I don’t like Janet Dafoe and the way she operates but that isn’t really the issue I think we should have seen the footage proposed before the signing. I didn’t sign up to the plea because I don’t like it and this was never made clear before I signed. I also didn’t like the whole video and thought it was rather childish/petulant in places. I personally will never have Janet Dafoe ever representing me and my views, but as I said this isn’t the issue.

The reason I won’t be supporting this is the way they are representing me as begging (my emotion isn’t to plead it’s to demand) and as a non religious person I find the blatant appeal to Christians uncomfortable (I realise that praying hands is not just Christian but in middle America it definitely is being used that way along with janets choice of the Whitney photo looking like Christ ) ...it’s not for me so I will need to support elsewhere that better represents me and my beliefs.

I’m still pretty disgusted by this and feel quite tricked and manipulated by ME Action. I am sure as mentioned my name is inconsequential so who cares right?

 

I feel uneasy when Collins is getting criticized harshly.

 

I find the video of Janet Dafoe explaining the Whitney plea quite moving.

Being a father myself, I can strongly relate to the personal story of a serious scientist gathering a team of other leading scientists at one of the great research institutions in what I'm sure feels like a race against time for Ron Davis and his wife (who has been busy, and who is dealing with her own cancer) and their child. It certainly helps to know the backstory, but when contextualized, I find the Whitney plea to be quite powerful.

I'd like to send my heartfelt best wishes to this family.

It also reminds me that there are many others who have it much worse than I do. I remember "severe" and in recent years am unfortunately getting reacquainted with what "moderate" feels like.

Whatever energies I have, I'd like to spend productively.

Bill

 

I feel like you @Andy. Very unhappy with this. I'm also not sure if it's "ok" to link a petition - that has a certain scope for which you sign - and other stuff together, which could suggest people signed for both. Actually, I'm a bit angry now that I think about it for longer...

 

I watched the video that was sent in the eMail, and there is this pleading sign.