Janet Dafoe - The Whitney Plea

[NelliePledge]

I respect your concerns up to a point but he has the right to express himself in that way and I don’t see that his parents merit any criticism for sharing that information

Edited to add up to a point I accept that people can interpret things in different ways and the potential concern there about the meaning of the gesture. I’m with Adam on predjudice point.

 

[arewenearlythereyet]

Would we say the same thing if he used a few words of sign language instead?

Well yes probably since most of the target audience don’t know sign language....as with any communication plan it’s about knowing who you are targeting and what the best message is to achieve your objective.

This just looks plain wrong so that’s how most folks will see it... I think it’s wrong on many other levels. I think a placard with a short message from a bed would be a lot more impactful and easier to mobilise without the strangeness.

 

[Alvin]

Well yes probably since most of the target audience don’t know sign language....as with any communication plan it’s about knowing who you are targeting and what the best message is to achieve your objective.

This just looks plain wrong so that’s how most folks will see it... I think it’s wrong on many other levels. I think a placard with a short message from a bed would be a lot more impactful and easier to mobilise without the strangeness.

Just wow
I don't even know where to start

 

[adambeyoncelowe]

Well yes probably since most of the target audience don’t know sign language....as with any communication plan it’s about knowing who you are targeting and what the best message is to achieve your objective.

This just looks plain wrong so that’s how most folks will see it... I think it’s wrong on many other levels. I think a placard with a short message from a bed would be a lot more impactful and easier to mobilise without the strangeness.

But if people react that way to sign language too then that suggests to me it's about ableism more than anything else. If someone feels uncomfortable with non-verbal expressions, that's their issue to deal with, not Whitney's or his family's.

I think the campaign probably would be more effective if people could contribute any gesture or words they wanted to, as it would be more genuine, but this revulsion/weirdness people seem to experience feels very prejudicial to me, and I don't like it.

 

[TiredSam]

Whitney and his family can communicate with each other however they want, of course.

But if Janet wants to make it into a "thing" and suggests that we all do it and send videos to Francis Collins "by the hundreds", then of course we are entitled to form a view on how this form of advocacy reflects upon us.

 

[arewenearlythereyet]

But if people react that way to sign language too then that suggests to me it's about ableism more than anything else. If someone feels uncomfortable with non-verbal expressions, that's their issue to deal with, not Whitney's or his family's.

I think the campaign probably would be more effective if people could contribute any gesture or words they wanted to, as it would be more genuine, but this revulsion/weirdness people seem to experience feels very prejudicial to me, and I don't like it.

See sams reply above ...it’s what I was half way through typing.

Best not to make this emotive just look at it as a communication campaign because that is what is being proposed.

 

[Mij]

This just looks plain wrong so that’s how most folks will see it... I think it’s wrong on many other levels. I think a placard with a short message from a bed would be a lot more impactful and easier to mobilise without the strangeness.

I sent the video link to my sister who has general knowledge of MillionsMissing to ask her thoughts. She was confused and thought the young boy was abducted and brainwashed. She completely missed the 'message' and found it strange.

 

[Hell..hath..no..fury...]

I just did the same thing with my Mam and after watching it, she thought we were now campaigning for the right to euthanasia and was very confused by the whole thing.

 

[Alvin]

Whitney and his family can communicate with each other however they want, of course.

But if Janet wants to make it into a "thing" and suggests that we all do it and send videos to Francis Collins "by the hundreds", then of course we are entitled to form a view on how this form of advocacy reflects upon us.

It seems the popular position is that anything outside the "norm" is to be avoided because it will backfire but inside the norm can also backfire but thats not a forefront concern despite being the same issue. Of course i expect few to agree with this analysis, but thems the breaks

 

[adambeyoncelowe]

It seems the popular position is that anything outside the "norm" is to be avoided because it will backfire but inside the norm can also backfire but thats not a forefront concern despite being the same issue. Of course i expect few to agree with this analysis, but thems the breaks

Exactly.

It takes five seconds to Google something. People are always shocked or confused by things they don't understand--that doesn't mean we should never present people with new things. This is meant to be a place of science. So let's be open-minded here instead of throwing rocks at the thing we don't 'get'.

 

[TiredSam]

I'm not shocked, confused, or throwing rocks. I don't need to google it because I understand it. I am not living in fear of being outside or inside the norm. I just don't like it.

Apart from facepalms, emotive and personal comments, does anyone who thinks it's a good idea have anything constructive to say?

 

[Alvin]

Exactly.

It takes five seconds to Google something. People are always shocked or confused by things they don't understand--that doesn't mean we should never present people with new things. This is meant to be a place of science. So let's be open-minded here instead of throwing rocks at the thing we don't 'get'.

Indeed, i have become recently interested in the concept of cultural policing, which is something we all do to varying degrees, we have cultural norms we 'protect' without realizing, staying in them ourselves and calling it out in others to get them back into cultural norms. Culture does change of course but the norms in use are "policed' by its members.
All that said this may not be the best advertising campaign idea, but it may also be a good one that goes viral. Just because its outside the "norm" doesn't mean we should dismiss it. Even our friend Ester Crawley makes a point of "daring to disrupt"...

does anyone who thinks it's a good idea have anything constructive to say?

So others opinions only matter if they are constructive to you?
This is not a personal insult, its a point that all opinions are valid even if they are not "conventional".

 

[andypants]

I think the campaign probably would be more effective if people could contribute any gesture or words they wanted to, as it would be more genuine, but this revulsion/weirdness people seem to experience feels very prejudicial to me, and I don't like it.

I agree it would be great if people could respond to this call in whatever way they feel best represents themselves, sign language, vocal or imagery. My first thought after the video was that it meant praying for death, asking to be released, so I get why some people feel it can give the wrong impression.

Which brings me back to that it should be equally effective if everyone who wishes to make a video do it in their own way, while maybe still keeping it short and simple. Maybe just saying "Please help me get better" out loud, if signs are not for you, or a poster to hold.

My biggest reason for not being comfortable with doing the signs for myself is more that I have never been so sick I can't speak, so I feel like I'm exaggerating if I make signs instead of using my voice when I still have the use of it. That would feel a bit weird to me, as I can't even imagine being that sick and don't want to imply that I do just for effect.

That doesn't mean I think other people shouldn't do it. If you feel like it's a good way to represent your feelings and thoughts on funding issues, then go with it. Making a video with signs could also represent our worry and wishes for the sickest among us, who can't make any videos themselves.

The important thing is finding lots of ways to express ourselves so as many people as possible feel like they can take part and be heard, and be open to that someone else might wish to do that in a different way than you.

(edited for clarity)

 

[adambeyoncelowe]

I'm not shocked, confused, or throwing rocks. I don't need to google it because I understand it. I am not living in fear of being outside or inside the norm. I just don't like it.

Apart from facepalms, emotive and personal comments, does anyone who thinks it's a good idea have anything constructive to say?

I did. I said it would benefit from people being able to use their own gestures or words. You ignored that.

 

[adambeyoncelowe]

I agree it would be great if people could respond to this call in whatever way they feel best represents themselves, sign language, vocal or imagery. My first thought after the video was that it meant praying for death, asking to be released, so I get why some people feel it can give the wrong impression.

Which brings me back to that it should be equally effective if everyone who wishes to make a video do it in their own way, while maybe still keeping it short and simple. Maybe just saying "Please help me get better" out loud, if signs are not for you, or a poster to hold.

My biggest reason for not being comfortable with doing the signs for myself is more that I have never been so sick I can't speak, so I feel like I'm exaggerating if I make signs instead of using my voice when I still have the use of it. That would feel a bit weird to me, as I can't even imagine being that sick and don't want to imply that I do just for effect.

That doesn't mean I don't think other people shouldn't do it. If you feel like it's a good way to represent your feelings and thoughts on funding issues, then go with it. Making a video with signs could also represent our worry and wishes for the sickest among us, who can't make any videos themselves.

The important thing is finding lots of ways to express ourselves so as many people as possible feel like they can take part and be heard, and be open to that someone else might wish to do that in a different way than you.

I agree it would be great if people could respond to this call in whatever way they feel best represents themselves, sign language, vocal or imagery. My first thought after the video was that it meant praying for death, asking to be released, so I get why some people feel it can give the wrong impression.

Which brings me back to that it should be equally effective if everyone who wishes to make a video do it in their own way, while maybe still keeping it short and simple. Maybe just saying "Please help me get better" out loud, if signs are not for you, or a poster to hold.

My biggest reason for not being comfortable with doing the signs for myself is more that I have never been so sick I can't speak, so I feel like I'm exaggerating if I make signs instead of using my voice when I still have the use of it. That would feel a bit weird to me, as I can't even imagine being that sick and don't want to imply that I do just for effect.

That doesn't mean I don't think other people shouldn't do it. If you feel like it's a good way to represent your feelings and thoughts on funding issues, then go with it. Making a video with signs could also represent our worry and wishes for the sickest among us, who can't make any videos themselves.

The important thing is finding lots of ways to express ourselves so as many people as possible feel like they can take part and be heard, and be open to that someone else might wish to do that in a different way than you.

I thought that about the gesture thing, too. It's not authentic to me, so I wouldn't feel comfortable doing it. I think it's important people who are severe can contribute, but I'd find something a bit more 'me' for my own video.

 

[Dr Carrot]

I don’t like it, for many of the reasons already outlined by others in this thread. I also accept that we all do advocacy in different ways, and if people think this is effective and powerful then that’s their right as well.

We don’t have to shoot down everything based on personal disagreements. Of course, if you do think it’s bad...then maybe suggest how it can be improved, rather than just criticising.

For example, I think that it requires too much back story and context to be sufficiently powerful on its own. An example of something better would be that campaign where people taped up their mouths and took photos in support of journalists who’d been captured. Simple and you understand the cause instantly. Is there any way this could be improved in a similar way?

 

[TiredSam]

So others opinions only matter if they are constructive to you?
This is not a personal insult, its a point that all opinions are valid even if they are not "conventional".

So where's the opinion in this?

Just wow
I don't even know where to start

It's completely devoid of content apart from rudeness.

 

[Hell..hath..no..fury...]

I think symbolism is a great idea, if people have the freedom to express themselves as they wish. There’s no point expecting hundreds of people to blindly copy you, if the act of doing so either makes them uncomfortable or has a completely different meaning to them and not something they personally wish to convey.

For me, its not so much about telling them that they can’t choose whatever symbolism they wish, its absolutely their right to do so, but trying to get hundreds of others to copy them, when the symbol doesn’t represent how we personally feel, is what makes me uncomfortable.

We’ve been silenced and misunderstood during our entire illness with no voice of our own. If i’m going to continue to be misunderstood i would rather it was a result of my own expression than someone else’s.

If we were to have a universally adopted symbol for campaign work, i’d be more comfortable if some time and thought was put into it, ideas put forward to the whole ME community and the top three favourites put forward for use to be voted on by the whole community.

 

[Alvin]

So where's the opinion in this?

Its a reply to your post

It's completely devoid of content apart from rudeness.

So i'm rude but disparaging sign language and claiming Whitney's signs are cult like behaviour is not?

I think symbolism is a great idea, if people have the freedom to express themselves as they wish. There’s no point expecting hundreds of people to blindly copy you, if the act of doing so either makes them uncomfortable or has a completely different meaning to them and not something they personally wish to convey

She made a request, there is no obligation or force involved. If you like it then feel free to add your voice of support, if you don't then no action is necessary (good for ME/CFS patients, doing less is always easier then more).
Lots of ideas have been thrown out here, few have gained traction. If this one is unpopular then ignore it, life goes on.

 

[Invisible Woman]

She made a request, there is no obligation or force involved. If you like it then feel free to add your voice of support, if you don't then no action is necessary (good for ME/CFS patients, doing less is always easier then more).
Lots of ideas have been thrown out there, few have gained traction. If this one is unpopular then ignore it, life goes on.

Yes the options are there for people to ignore it, follow it, or do something different. They are also free to discuss it surely?