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Opinion piece: If only Brexit had been run like Ireland’s referendum [not posted for the politics]

Discussion in 'Other health news and research' started by Andy, May 30, 2018.

  1. Andy

    Andy Committee Member

    Hampshire, UK

    Not posted for the Brexit or abortion topics but for the last section of the article that I have included in the quote above. I believe that this is something really important that we can all engage in to help advocate for ME awareness - wherever possible, and sometimes it's not, 'stand up' and tell your story.
    Gecko, BurnA, Allele and 11 others like this.
  2. Bill

    Bill Senior Member (Voting Rights)

    Los Angeles
    I think the idea that we need to get personal stories out to the larger community either through personal interactions or via the media is vital to turning a tide that has already begun to shift.

    The film Unrest was hugely important in making ME/CFS a personal story. Thank for that @JenB!

    Personal stories are the key to winning hearts and minds in my estimation.

    Allele, NelliePledge and alktipping like this.
  3. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

    Just to play devils advocate here. The question for me is did the campaigning actually change the result much? The polls I’ve seen from the years before have shown a majority in favour of changing the law anyway. The percentage of support changes depending exactly how the question is phrased but the result seems in line with how people were thinking the few years before.

    If anyone has any better data showing something different then great but I’m just sceptical here. I think that the reason people listened to those personal stories was because they already cared and sympathised. Something lacking for us.
    Allele, alktipping, Samuel and 2 others like this.
  4. Samuel

    Samuel Senior Member (Voting Rights)

    we need experts at this stuff, and one reason i support meaction is that i think at some point they will be able to hire the really serious and experienced beltway firms in washington and so on.

    but this idea is intuitively appealing. imagine plastering the manipulosphere with personal stories.

    i just want to add one thing: it is not only personal stories that need telling, but also our collective story [both our detailed history and compelling narratives for audiences].


    the key part is the bill moyer quote:

    > Movement activists will be successful only to the extent
    that they can convince the great majority of people that the
    movement, and not the powerholders, truly represent
    society's values and sensibilities.
    Last edited: May 31, 2018
    Allele, Trish, alktipping and 2 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    It has to work on multiple levels and getting individual stories out into the public domain has to be done to make the public see it could be them or their family member.
    This isn’t going always to be brilliant coverage or get exactly “the right messages” out there because of the patchy quality of journalism especially at local level nowadays in the U.K. and some of the people are doing grassroots advocacy and not necessarily aware of the political history.

    Equally the different organisations put different spins on things with some giving overly optimistic messages about recovery. But it all adds up to a weight of coverage that will cause perceptions to start to shift and people to start to talk about ME.

    I had experience of a parent getting diagnosed with dementia when people didn’t talk about it. Oh you’ve got problems with your procedural memory. No general awareness whereas through people telling their stories- there was a groundbreaking documentary called Malcolm and Barbara that showed someone In 50s who had severe dementia. https://en.m.wikipedia.org/wiki/Malcolm_Pointon It began to be something people would talk about and people had heard of
    Last edited: May 31, 2018
    Allele and Invisible Woman like this.
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    This is precisely it. We need to wake them up to the fact it could be them.

    So far the BPS narrative has encouraged the general population to consider us to be psychologically and emotionally weak at best and malingerers at worst. This has prevented the ordinary person from identifying with us. We need to change that.
  7. Allele

    Allele Senior Member (Voting Rights)

    I heard a more recent interview with Hillary Johnson, where she was fairly scoffing at the personalized advocacy efforts. I don't agree with her that it is maudlin or what have you to tell the personal stories, I think they are crucial--but I do agree with her that the long political history of denialism, obfuscation, misopathy and manipulation MUST be the context for these stories. It is the system that has stopped up its ears, and by deliberate extension the public's ears, that is the foundation of our unnecessary suffering. Our collective tragedy is the direct result and consequence of this system's self-serving ignorance and corruption.

    And if people hear that, as has been shared above, as something that could happen to them too, there would be more attention and concern paid to the root of the scourge.
    TiredSam, BurnA, andypants and 2 others like this.
  8. BurnA

    BurnA Senior Member (Voting Rights)

    The referendum in ireland was carried because of one persons story.
    (mainly). Unfortunately it took the loss of Savita Halappanavar's life to make people realise what exactly was going on.

    I think we need a watershed moment too.
    I am not sure if hundreds or more personal stories make a difference, we need a controversy that will shock.

    ETA :
  9. Andy

    Andy Committee Member

    Hampshire, UK
    And we may have had that, in my opinion, with Merryn's death, especially as her family are doing invaluable advocacy work as well.

    It's just such a sad state of affairs when it takes a death (or deaths) to bring about change, either in the ME world or with pretty much any other issue.

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