Janet Dafoe - The Whitney Plea

I don't think the meaning of the hand movements is at all clear without some accompanying explanation. I hope people who do this account for that as I want our advocacy to be clear above anything else.

I'm really not keen on the idea, but I guess for others it will be useful, doable and an inspiration to take part in their own way.

I'm more worried by all the shoes, to be honest. Now those are seriously creepy :laugh: Eww! I'd rather absail into the debating chamber of the house of commons with the pace trial reanalysis paper between my teeth than be the person who organises the shoes.

But my shoe problem doesn't mean it shouldn't be done, or that it doesn't help our advocacy. I just have to get over myself.

Please, let's just agree to disagree :)

Edit to emove last edit.
 
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I feel a little bad now because I posted the video of the boy. Would it be possible to make this thread private or is it ok if I delete my previous post (with the video of the boy)? I understand some of the concerns mentioned here but wouldn't want the kid to read this about him.
 
@Joh, I think it was fine to post the video but I agree that the subsequent discussion has resulted in a situation where the video being in this public thread could cause the boy and his family some concern. Particularly as it was a child involved, I felt it was better to err on the side of caution and so I've removed the video.

Thanks to all of you who are engaging constructively in a discussion that respects differing viewpoints.
 
Diluted-biscuit said:
If you have to google the meaning of something to understand it then I don’t think it’s been explained well enough in the first place.
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I have to respectfully disagree and I probably Google at least 10-15 things per day as they come up on line (or in real life) so I can understand them and learn what they are. The first time I ever saw a protest with empty pairs of shoes it was for gun violence and each pair of shoes symbolized each child who was murdered by a gun. The shoes showed the age that their life stopped and symbolized all of the things they will never grow up to do.

I think it is a brilliant concept both for children murdered by gun violence and for the ME/CFS Millions Missing Movement. I would think that we WANT people to Google what they see so that they can learn more about it. I am not saying that the gesture that Janet chose for "Whitney's Plea" is the gesture that I would symbolize for my own illness nor that anyone else should do it. Different things resonate for different people and it could be done in English, any other language, sign language, holding a sign, an empty pair of shoes, etc. It all works for me.
 
Excuse my basic comment, sore eyes and head today. I personally think the gesture would be laughed at because it does have a strangeness about it. But would just like to add that I felt the love and care (as I am sure everyone else did) in Janet Dafoe as she was talking and understand. I remember being so ill and using hand gestures briefly.
 
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Gingergrrl said:
I have to respectfully disagree and I probably Google at least 10-15 things per day as they come up on line (or in real life) so I can understand them and learn what they are. The first time I ever saw a protest with empty pairs of shoes it was for gun violence and each pair of shoes symbolized each child who was murdered by a gun. The shoes showed the age that their life stopped and symbolized all of the things they will never grow up to do.

I think it is a brilliant concept both for children murdered by gun violence and for the ME/CFS Millions Missing Movement. I would think that we WANT people to Google what they see so that they can learn more about it. I am not saying that the gesture that Janet chose for "Whitney's Plea" is the gesture that I would symbolize for my own illness nor that anyone else should do it. Different things resonate for different people and it could be done in English, any other language, sign language, holding a sign, an empty pair of shoes, etc. It all works for me.
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When something that is supposed to be a simple, impactful and easily understood statement fails to be easily understood without a google search I believe you’ve failed. This campaign has the added problem that not only will people not understand it (in my opinion) they will think they understand it and that it means people are praying for death (in my opinion). I personally believe this is a disaster.

The campaign someone else mentioned of the journalists mouths taped shut is a great example of something done right. The AIDS tombstone campaign in the UK was another good example in my opinion. Instantly understandable. It’s good to get people to google things to learn more but you have to get them interested first.

If it works for you then great but I disagree.
 
Diluted-biscuit said:
When something that is supposed to be a simple, impactful and easily understood statement fails to be easily understood without a google search I believe you’ve failed.
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I guess it depends how much knowledge the person already has re: the topic. I had never heard of the term "ME" prior to joining PR in 2014 (b/c the term "ME" is not used in the US) and I had barely heard of "CFS" until I was given that diagnosis in 2013 by a former PCP and began to research it on my own. So if I were walking in my city and came across the demonstration with the empty pairs of shoes, prior to a few years ago, even if it said "ME/CFS" in huge letters, I would not have known what that was and would've had to Google it, even though I think the empty shoes is a brilliant campaign idea.

Diluted-biscuit said:
This campaign has the added problem that not only will people not understand it (in my opinion) they will think they understand it and that it means people are praying for death (in my opinion). I personally believe this is a disaster.
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I guess because I watched Janet's video explanation first, I knew that she was describing the gesture that Whitney makes and I understood what it meant. I have no idea how I would have interpreted it if I had just seen it without hearing her explanation first. I truly do not know!

Diluted-biscuit said:
If it works for you then great but I disagree.
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It's not a gesture that I have ever made nor does it resonate for me on a personal level. I meant that it "works for me" in the sense that Janet was making a plea for Whitney and therefore was using Whitney's personal gesture. I have never lost the ability to communicate using speech, but if I did and if I had a gesture that I used with my family, I would feel horrible if people who did not even know me were critiquing my gesture or implying that it was somehow wrong or bad.

Maybe I completely misunderstood this, but I didn't view it as Janet saying that Whitney's gesture should replace the empty shoes campaign vs. that it was an additional plea for Whitney (as his mother) and if it resonated for people, then they could do it on their social media page (if they have one) and if not, then they don't need to do anything.
 
Having been raised in a Christian environment, I would have understood it as "Please God, help me" or "My trust lies in God"; but I agree it can also be understood as a wish for death. I personally think it's too religious looking; if it's supposed to reach a broad audience.
Interesting discussion though, and thanks to everyone
 
I really don't think anyone here would censure such a gesture of reaching out to communicate as a private personal choice.

Certainly that's not a good thing to do. It would horrify me. But in the context of using it as a universal or widely shared symbolic gesture I'd have to agree that while the empty shoes resonate with me this gesture doesn't so much.

I don't view it as something I'd feel I'd want to make into a more general symbolic use. I wouldn't shout down anyone who felt they wanted to use it. Just sharing my two cents.
 
Joh said:
I feel a little bad now because I posted the video of the boy.
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I don't think you should feel bad at all b/c you posted the video in good faith with no bad intentions! I have posted a few times thinking something was completely neutral, and with good intentions, but something got misunderstood or led to conflict when it was never my intention!

Joh said:
Would it be possible to make this thread private
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I do agree with you and Jenny that this thread should be moved to Member's Only and made private.
 
My short view; if you want to express something through symbols, using widely known symbols for praying and upwards will be viewed as praying either to a god, or wanting to move towards one.

I would also suggest that people make the distinction between a private symbol being used between the person sending the code or symbol and the decoder, and asking others to replicate the symbol are two completely different things, and where the expressed discomfort seems to lie.
 
Luther Blissett said:
My short view; if you want to express something through symbols, using widely known symbols for praying and upwards will be viewed as praying either to a god, or wanting to move towards one.

I would also suggest that people make the distinction between a private symbol being used between the person sending the code or symbol and the decoder, and asking others to replicate the symbol are two completely different things, and where the expressed discomfort seems to lie.
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By this logic no new symbols can ever be developed or deployed since new symbols are by definition not innate :confused:
 
I just came across a few videos on twitter, and they made me feel really uneasy.

First, it is difficult to understand.

Then, the "pray/please" gesture for me is more a begging sign. I don't like it at all, I'm not begging for help, I'm asking governments to do their duty into financing a major health problem.
I had no particular thought at first, but after seeing all these videos, I really, really do not like it.
 
Showed Janet's video to my wife, only asking "what do you make of this", so as to try to capture her unbiased reaction - after looking uncomfortable while watching, she reluctantly said, "but that looks like he's asking to die".

I actually didn't make that association initially, but it did make me very uncomfortable, I think in part due to the religious undertone of it. The general concept isn't bad, in my opinion, but the signs suggested by Janet are just too ambiguous, again in my opinion.

Perhaps if actual sign language was used, along with a placard explaining that "NIH doesn't listen to me, so I'm using sign language to ask for more research funding"? I'm sure that could be improved but I'm trying to keep the visual aspect while delivering the message clearly.
 
I completely respect Janet's wish to share the private gesture Whitney and his family use with the ME community as part of sharing their family's experience. And, from Janet's explanation, I understand it as a gesture with great meaning from a very sick man addressed to his father the scientist who is trying to find a treatment. His plea is a very personal one to his father to find a way for him to get better. In that context of private communication it holds precious meaning for those involved.

However, what we are being asked to consider by Janet and OMF who put out this video is the use of this private and very personal gesture as a public gesture, as I understand it, as a plea from patients to funding authorities to put proper funding into research that can lead to treatment.

The problem, as I see it, is that while we appreciate the aim, many of us find the suggested method to be one we are not comfortable with and we fear will be misunderstood and misinterpreted. The level of discomfort evident in this conversation suggests that it it unlikely to catch on in a big way as a community effort in the way that the shoes at demonstrations have done.

I have seen a few people on twitter posting themselves making the gesture, and, like many others, found it weird and meaningless. The only way I can think of to fix this is to add words to the screen as the gesture is being made, so the praying gesture could be labelled 'Please' and the pointing upwards as 'I want to get better'. This still leaves the gesture feeling odd when taken out of its original context, but at least it would not be misunderstood.
 
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