Diluted-biscuit
Senior Member (Voting Rights)
I’d really rather this stuff wasn’t associated with ME advocacy. It’s just way too divisive in my opinion.
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#MEAction: Toxic Masculinity Made my ME Much More Punishing
- Thread starter Andy
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Andy
Retired committee member
Well, I think it's an important topic to discuss. I find people trying to deny the societal pressures on all of us, no matter what name they are given, to be far more divisive.
Does it really help people to not question their belief that "toxic masculinity" has contributed to their condition?
Would we not normally be asking: where is the evidence, where is the control group? If you insist on the term "toxic masculinity", what about correlation is not causation?
is it helpful to support the dissemination of this view unquestioned? I thought we were interested in questioning possibly unwarranted conclusions.
I thought the article had much in it that was good and well written,, but that it was irreparably damaged by that cliché.
Would we not normally be asking: where is the evidence, where is the control group? If you insist on the term "toxic masculinity", what about correlation is not causation?
is it helpful to support the dissemination of this view unquestioned? I thought we were interested in questioning possibly unwarranted conclusions.
I thought the article had much in it that was good and well written,, but that it was irreparably damaged by that cliché.
Andy
Retired committee member
Does it really help to disbelieve an opinion that a pwME expresses about their illness, especially when it's an opinion about themselves? I haven't seen any attempt to convince the author that, as an individual, the concepts of toxic masculinity didn't harm him/affect his illness course out of the ordinary, just attempts to argue that societal pressures shouldn't be talked about in the context of ME.
Well, are we going to start analysing every opinion piece to the same standard as scientific paper? When new members join the forum and tell their stories, should we be picking their opinions apart, demanding to see evidence and control groups for their assumptions?
I thought that the article will do a great job in connecting with a certain audience because of the language used but, because it's the opinion of one patient, it won't resonate with everyone, as is obvious.
Well, are we going to start analysing every opinion piece to the same standard as scientific paper? When new members join the forum and tell their stories, should we be picking their opinions apart, demanding to see evidence and control groups for their assumptions?
I thought that the article will do a great job in connecting with a certain audience because of the language used but, because it's the opinion of one patient, it won't resonate with everyone, as is obvious.
sb4
Senior Member (Voting Rights)
Whilst it is true that it will connect well with a certain audience, it will also put another audience right off. If MEAction is okay with adding politics to there opinion pieces then that is there choice however I think it damages and obfuscates the core message of ME which is the fact that it is a real disease with studies backing to back this up.
I don't see it as adding politics. They are providing a platform for a series of individuals with ME to tell their lived experience in their own way. If that lived experience for one person is feeling harmed by being told to man up or other aspects that only affect men, and another finds little knowledge of and diagnosis of ME in some ethic groups, then that is worth telling.
They are not excluding others, they are telling what it's like for them and for others like them in one way or another. People who share those particular experiences may be helped to feel less alone, more understood. And those of us who don't share those particular challenges will understand better what some of our fellow sufferers are going through. It can also help to educate people who don't have ME about the challenges and barriers some people with ME face.
Lots of other perspectives are worth sharing - old people with ME, children with ME, single people with ME, people who are struggling financially because of ME...
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sb4
Senior Member (Voting Rights)
@Trish The way I am looking at it is, if I didn't have CFS and I came across MEAction how would it affect my opinion on ME? For me, personally, I would see Identity politics being brought up often, I don't like this brand of politics and see it as scientifically wrong for the most part. I would then be faced with 2 choices, believe the mainstream NHS point of view that it's in their heads / CBT/GET. Or believe activists who seem to hold over IMO unscientific opinions. I would choose mainstream, and I would be wrong.
However if I read the same post but instead of toxic masculinity, it was replaced with something like stubbornness, I would be more incline to trust it.
I am not involved in MEAction so I am not demanding anything, just adding my perspective.
However if I read the same post but instead of toxic masculinity, it was replaced with something like stubbornness, I would be more incline to trust it.
I am not involved in MEAction so I am not demanding anything, just adding my perspective.
arewenearlythereyet
Senior Member (Voting Rights)
I think we need to consider being a bit smarter about how we communicate.
The principles of campaigning or winning debates isn’t to throw every single issue into the pot...this just leads to confusion and is a recipe for failure.
I’ve heard the ‘providing a platform’ argument before ...this smacks a bit of comunication by committee and a neat way of MEAction to absolve itself of its responsibility as a ‘publisher of material’ (I think someone high up in Facebook tried that argument once
) ...if this genuinely is a “platform” then who is deciding what goes on and stays on the site...is it a free for all? I doubt it is.
If it is and there is no approval or review of content at present then surely it’s exposed for any wackadoodle idea to be proliferated across it? E.g. anti vaccination, paleo diets etc etc. I suspect that they haven’t got a handle on control, of messaging just judging by how confused it has become over the last couple of years. This will not do any of us any favours. It’s dilutive and disorganised...and this is what outsiders looking in will see. A bunch of people moaning about everything.
That isn’t to say all the issues aren’t valid ...but you need to think of your objective first (not too many and prioritised ) and then target specific audiences with the same message theme (sometimes in different ways) and repeat over and over until you get traction or decide to move on to the next. Unfortunately that means that personal hobby horses often have to be put aside for the greater good.
‘The more the better’ regardless of message theme is definitely not the basis of a good communication plan.
You just have to look at how others are doing it. Cancer research has been running its ‘stand up to cancer’ campaign for a number of years.. This has consistently used the same message theme over that time (one in two people will get cancer in their lifetime) targeting a broad audience through different media streams. It’s success as a communication strategy is that it’s targeting a broad audience, tapping into fear, using stats to tell a story and has a simple consistent slogan.
My impression of MEAction is one of frustration. They do a lot good...but their communication strategy is pants. This is a missed opportunity imo.
I’m only speaking from the viewpoint of a patient, although I do have experience in marketing communications in another field and the principles are the same ...just how you go about it may differ depending upon the target audience.
The principles of campaigning or winning debates isn’t to throw every single issue into the pot...this just leads to confusion and is a recipe for failure.
I’ve heard the ‘providing a platform’ argument before ...this smacks a bit of comunication by committee and a neat way of MEAction to absolve itself of its responsibility as a ‘publisher of material’ (I think someone high up in Facebook tried that argument once
) ...if this genuinely is a “platform” then who is deciding what goes on and stays on the site...is it a free for all? I doubt it is. If it is and there is no approval or review of content at present then surely it’s exposed for any wackadoodle idea to be proliferated across it? E.g. anti vaccination, paleo diets etc etc. I suspect that they haven’t got a handle on control, of messaging just judging by how confused it has become over the last couple of years. This will not do any of us any favours. It’s dilutive and disorganised...and this is what outsiders looking in will see. A bunch of people moaning about everything.
That isn’t to say all the issues aren’t valid ...but you need to think of your objective first (not too many and prioritised ) and then target specific audiences with the same message theme (sometimes in different ways) and repeat over and over until you get traction or decide to move on to the next. Unfortunately that means that personal hobby horses often have to be put aside for the greater good.
‘The more the better’ regardless of message theme is definitely not the basis of a good communication plan.
You just have to look at how others are doing it. Cancer research has been running its ‘stand up to cancer’ campaign for a number of years.. This has consistently used the same message theme over that time (one in two people will get cancer in their lifetime) targeting a broad audience through different media streams. It’s success as a communication strategy is that it’s targeting a broad audience, tapping into fear, using stats to tell a story and has a simple consistent slogan.
My impression of MEAction is one of frustration. They do a lot good...but their communication strategy is pants. This is a missed opportunity imo.
I’m only speaking from the viewpoint of a patient, although I do have experience in marketing communications in another field and the principles are the same ...just how you go about it may differ depending upon the target audience.
James Morris-Lent
Senior Member (Voting Rights)
The key thing for me is that soldiering on through the disease is not toxic masculinity. Almost every man and woman who tells their story reports doing this. We all do this because we want to... have lives and accomplish things. And doctors are telling us we're not sick, so we feel obligated to struggle on for what turns out to be too long. The actual issue is poor understanding of the illness and bad ideas held by people in medicine. This is what we should attempt to address. I would hold that we should maybe not go on the attack against humans' innate desire to, well, try.
Toxic masculinity could be a useful term. I strongly agree that certain male behavioral norms must be shifted to make life more bearable for everyone. The first issue is that the substance that the term ought to have is peripheral here, at best. The second issue is that in practice its a nebulous buzzphrase that is more incantation than anything substantive. As such it attracts and inflames ideological agendas that I really don't see as helpful to substantively addressing any issue surrounding ME.
just my 2¢
Toxic masculinity could be a useful term. I strongly agree that certain male behavioral norms must be shifted to make life more bearable for everyone. The first issue is that the substance that the term ought to have is peripheral here, at best. The second issue is that in practice its a nebulous buzzphrase that is more incantation than anything substantive. As such it attracts and inflames ideological agendas that I really don't see as helpful to substantively addressing any issue surrounding ME.
just my 2¢
I think you and I share a lot of the same concerns, @arewenearlythereyet, and not only about #MEAction. Media stories generated via the MEA and Action for ME in the UK seem to feature mostly pwME who are young, white, female and photogenic. Or alternatively who have 'recovered' apparently through 'determination' and are now climbing mountains or belly dancing. (I made that last one up).
Any story that gives a distorted view of what ME is about is a problem. Sadly it seems these are the only stories the media are interested in. Oh, and of course stories that we're all dangerous antiscience lunatics who need therapy and exercise.
If this particular article, or the phrase 'toxic masculinity' were to be used by #MEAction as the basis of campaigning, I agree it would be unhelpful. I don't think campaigns about ME are helped by focusing on one particular subgroup defined by gender, age, sexuality, race, class or anything else.
They are not the root of our problem. Our problem is we are sick, gaslighted, and not provided with anywhere near adequate research funding or care.
Does this mean ME organisations should not include any individual perspectives and personal stories on their websites? I don't know. If they are used as the headline front page story and pushed to the media, then I am as wary as you, but I've just explored the MEAction website, and this story is one of dozens of daily news items, very few of which are individual or subgroup focused - they are mostly about research news and advocacy planning and events.
If they are on the websites mainly as a way of helping people from various minorities or facing similar challenges to feel included, then why not? If they are used as a key advocacy tool, then there's a problem.
arewenearlythereyet
Senior Member (Voting Rights)
Well I think if we are going to debate belly dancing and ME we definitely need a new thread.
I agree with everything you’ve said. I guess we can’t influence it ...I just wish we had some real clear messaging that we could all get behind.
I just read this article and I do find it a bit problematic. I don't disagree with discussing how gender norms influence handling of disease. I've seen in forums male PWME discussing how heavily they are affected by being unable to provide financially and I've seen the same with female PWME negotiating being unable to perform more traditional "womanly" duties like cooking and cleaning, especially in the context of having a family. This discussion is valuable, I think. But, to me, the use of terms like "alpha-male" and "toxic masculinity" is somewhat of a divisive distraction from the underlying issues.
But, Trish, I think, hits the nail on the head with her discussion of impact. Advocacy won't live and die on this article, or the last, or the next, especially with the context Trish provided about how these articles are being used. So it's probably not worth getting too riled up about. We've been sick for years and decades and will almost certainly be so for years and maybe decades more. I don't see this article influencing that to any real degree.
But, Trish, I think, hits the nail on the head with her discussion of impact. Advocacy won't live and die on this article, or the last, or the next, especially with the context Trish provided about how these articles are being used. So it's probably not worth getting too riled up about. We've been sick for years and decades and will almost certainly be so for years and maybe decades more. I don't see this article influencing that to any real degree.
Snowdrop
Senior Member (Voting Rights)
I think with stories as opposed to reading research articles there is the issue of the photograph vs the movie.
The author wrote this at a specific time in his life and those were his thoughts of the moment.
I agree with two points. He has every right to tell his story from his POV like anyone does. It's his story told in his words with his understanding. All of us have our stories and all of us have an imperfect grasp of our own reality when we use words to generalise our experience. Thus my second point. I don't think the term Toxic Masculinity as regards his experience of being implicitly coerced in a social context to behave as strong and able to go on (awkwardly worded by me here) I don't see that as a particularly useful term as it seems others do not also. This is because I think that experience is shared across all divides-- gender, race, age etc. My POV.
But it's his story to tell and that's how he is making sense of his experience. Maybe this time next year he will have a somewhat different POV based on further living with and learning from his experience and others. Or not.
The author wrote this at a specific time in his life and those were his thoughts of the moment.
I agree with two points. He has every right to tell his story from his POV like anyone does. It's his story told in his words with his understanding. All of us have our stories and all of us have an imperfect grasp of our own reality when we use words to generalise our experience. Thus my second point. I don't think the term Toxic Masculinity as regards his experience of being implicitly coerced in a social context to behave as strong and able to go on (awkwardly worded by me here) I don't see that as a particularly useful term as it seems others do not also. This is because I think that experience is shared across all divides-- gender, race, age etc. My POV.
But it's his story to tell and that's how he is making sense of his experience. Maybe this time next year he will have a somewhat different POV based on further living with and learning from his experience and others. Or not.