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An idea on how ME/CFS patients can create mass street demonstrations — and not over exert ourselves

Discussion in 'Advocacy Projects' started by Hip, Jun 1, 2014.

  1. ricericerice!

    ricericerice!

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    the gays were not afraid to offend sensibilities, what with funeral-ins and such. I think this is a fabulous approach.

    we should have sleep-ins, half dead patients on cots with IVs, unmoving. this would demonstrated the severity of the illness, giving much-needed visibility. less severely affected patients such as myself ought to be able to handle the logistics for those of you who are truly ill (I would hope very much that we could convince you to attend).

    maybe a "city of tents" as per occupy, except that pepper-spraying a disabled person looks very bad indeed.

    thought it would be funny/effective for us to rest in coffins, therefore symbolizing the "living dead".

    cars are no good, imo, we need people to see us. wheelchairs are good!
     
    Hip likes this.
  2. ricericerice!

    ricericerice!

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    yes, I believe this calls for some street theater.
     
    Hip likes this.
  3. redviper

    redviper

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    Interesting idea, Hip. I must commend you on thinking outside of the box, it's innovative ideas like these that will eventually help our movement break through into the public conciousness and put pressure on elected officials. I certainly agree with your reference to the AIDS movement in the 1980s, it's the most notable example of a patient community successfully changing public discourse around a disease this generation.

    I'll play devils advocate though and point to some of the logistical challenges associated with such a protest, including rallying sufficient numbers of advocates in a specific geographic area. Plus, as you know, our condition can fluctuate so significantly from day-to-day, it would be hard to estimate just how many people would actually participate on the day of the event.

    I think the most appealing alternative is to focus primarily on online protests that could harness the entire international ME community. We don't have huge numbers in the ME community, so we need to focus on united efforts that generate the most attention for our cause. Social media and other forms of online advocacy give our community the best opportunity to achieve these objectives, in my opinion.
     
    Last edited: Jul 5, 2014
  4. redviper

    redviper

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    Given the desperate nature of the ME community, acts of civil disobedience should not be discouraged. The ME community has been politely pleading for help for a generation now, it's time to consider different approaches. Unfortunately we face too many systemic challenges (insurance companies, etc) to accomplish our objectives through "sit in" protests.

    Personally, I would gladly risk civil disobedience and the potential of higher conflict to prevent yet ANOTHER generation of people from suffering through this nightmare.
     
    Sidereal, NK17, ricericerice! and 2 others like this.
  5. Hip

    Hip Senior Member

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    If you consider a metropolis like New York, LA or London, and take the population as 10 million (just as a round figure), then assuming 0.2% of the population has ME/CFS, that gives you 20,000 people with ME/CFS in these cities. But I agree, a lot of these people may want to go, but then feel unable on the say, due to a downturn in their illness. The other issue would be communuication: how do you get in touch with these 20,000 in order to let them know about the demonstration?

    I have been trying to think of ideas regarding an online protest, which ME/CFS patients should be able to do much more easily. One idea I had was to focus on a few major newspapers, and then every day for week, or even a month, ME/CFS patients could post mini articles and statements about ME/CFS in the comments section of those newspapers, for every single article that the newspaper published, not just in the ME/CFS articles. This would mean that everyone reading the newspaper would have a good chance of seeing those statements.

    This is just a first attempt at an idea for an online protest. With a bit of brainstorming, we may be able to come up with something much better.

    With political causes and traditional marches and demonstrations in the streets, what can happen is that you start out with group of core supporters of the cause, but after one or two demonstrations, this core group of protesters attracts what you might call the "rent a mob" — there are always a number of people in society who have a lot of pent up anger, and they may then link themselves to a political cause just because it gives them an opportunity to express their anger. This is often why demonstrations and movements may start out peaceful, but some time down the down the line, they can turn aggressive. Personally myself, I find aggression and turmoil very hard to bear. And I think many ME/CFS patients are like this: we have high sensitivities to such things. I find it very unpleasant even when I just witness two people in a verbal disagreement. So if you want a demonstration to be ME/CFS patient friendly, you'd want to keep it calm and peaceful. The AIDS/HIV marches and demonstrations by the gay community did not use any aggression, as far as I am aware.

    What might work rather well, though, is the use of drama and theater, as @ricericerice! indicated just above. Some street theater with ME/CFS patients on IV drips, or ME/CFS patients dressed up a zombies — after all, most of us ME/CFS patients feel like zombies mentally. Many of us are the living dead. At least this sort of thing would attract the media, because the media love a good photograph opportunity.

    Mass civil disobedience is another story. This concept was pioneered by Gandhi in South Africa, and involves no aggression or violence, but rather a peaceful mass action. So for example, ME/CFS patients could en masse refuse to pay taxes, on the grounds that only a paltry amount of tax money is allocated by government to ME/CFS research. Or better still, write could write to our local taxman, and explain that we are withholding a certain percentage of our taxes, and placing this money directly in a ME/CFS biomedical research fund, because the government has been too negligent to do this. Of course the problem with this idea is that many ME/CFS patients are not working anyway, and may depend on state or insurance payouts. The other problem with this particular idea that it is illegal. But you get the general idea.


    I do think what @ricericerice! said above about offending sensibilities could be a very good approach, though. And this could be done through street theater, just as the gay community did with coffins in their HIV/AIDS marches.
     
    Last edited: Jul 5, 2014
    ricericerice! likes this.
  6. Hip

    Hip Senior Member

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    I have just had another idea:

    I mentioned just above that ME/CFS patients could write could write to their local taxman, and explain that they are withholding a certain percentage of their taxes, and placing this money directly in a ME/CFS biomedical research fund, because the government has been too negligent to adequately fund research into this disease.

    The problem is that although this would be morally right, it would also be illegal. So instead, what I thought is that ME/CFS patients could start a campaign in which we, as the ME/CFS community, try to negotiate with the government for the right to withhold a certain percentage of our taxes, and divert that money into a ME/CFS biomedical research fund. OK, the government aren't likely to agree, but what we would try to do is get our campaign picked up by the media and press — it would make a media good story: ME/CFS patient group, who are largely are deprived of government biomedical research funding, ask if they can put some of their own taxes towards ME/CFS research.

    As I say, the government is very unlikely to agree, but if we can publicize this campaign in the press, then it would embarrass the government, and generate publicity.
     
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  7. golden

    golden Senior Member

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    Yes this is being done with Farmageddon.
     
  8. Valentijn

    Valentijn Activity Level: 3

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    I think this is an excellent idea. But I'm wondering how many of us are able to work and therefore still pay taxes :p
     
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  9. Sasha

    Sasha Fine, thank you

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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I haven't been able to earn enough to be liable for tax since becoming ill. The same reason I haven't been able to afford to run a car, like many people in the UK.

    Even if I could afford to run a car, I have doubts as to whether my concentration would be up to driving for long, and I always found other traffic very scary!

    A car-based demo would also sit very badly with my Green principles (unless perhaps the car were electric!).
     
    Valentijn likes this.
  11. Hip

    Hip Senior Member

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    Yes, that's what I mentioned earlier: that many ME/CFS patients are not working anyway, and may depend on state or insurance payouts.

    Though for those ME/CFS patients who have family members, like spouses or parents, who work and provide financial support, we could argue for a percentage of their taxes to be diverted into a ME/CFS biomedical research fund.
     
    Valentijn likes this.
  12. ricericerice!

    ricericerice!

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    I want the really sick people there. I'm willing to arrange transport. I want people to be offended and disgusted and shocked and outraged. I want to make it so that they can't ignore us anymore.

    I'm happy to illegally occupy a parkspace. should the cops try anything, it'll look real good for us, and real bad for them. ghandhi tried something similar actually and I believe this was how he won the sympathy of the international community.
     
  13. taniaaust1

    taniaaust1

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    I agree that anything which may cause a traffic jam could well get the general public just angry at us as much as I wish we could simply just ride around in cars.

    Unfortunately in my case the only kind of way myself and many like me could participate in something like this, is in layins, I cant go out even sitting in the wheelchair for too long. Most do not have wheelchairs as good as that idea would be if lots with wheelchairs could do it.
     
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  14. taniaaust1

    taniaaust1

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    I think protesting is simply physically to hard for many, by the time many have got out of bed, had breakfast, got dressed and got out of the house, many are already exhausted.. I could only do lay in protests. I couldnt even protest in my wheelchair unless I had another to push me (and I dont have that kind of help in my life).

    Maybe someone should start up a survey asking people the reason why they dont protest?

    I can say that the one time I did a lay in protest, no one seemed to come across as seeing me as lazy. I got a lot of "surprised" reactions at my signs (I held my protest at a medical conference with signs about "rituxmab for ME?" and "ME/CFS invisible illness"). I also drew concern as people could actually tell I was ill. The medical professionals seemed very startled and like they didnt know how to take this, that someone with ME/CFS was protesting. (I guess I was supposed to be in bed.. out of sight out of mind one could say).
     
    Last edited: Jul 7, 2014
  15. Valentijn

    Valentijn Activity Level: 3

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    Many with mobility scooters probably also have wheelchairs. So they could ride their mobility scooter, and loan the wheelchair to another patient who can't stand long during the protest.
     
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  16. taniaaust1

    taniaaust1

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    I think things like this would have to be arranged before hand for those who cant stand long to even go.
     
  17. Valentijn

    Valentijn Activity Level: 3

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    Yeah, but there'd also likely be people who would need to sit or lie on the ground at times. Depending on how long such a demonstration was, I'd probably have to, since my pulse pressure will plummet after sitting up with my feet down for a while. So that's something that would also need to be planned for.
     
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  18. taniaaust1

    taniaaust1

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    This is why I think any large moving ME/CFS protest in which people are moving from one spot to another, wouldnt work, there will be always people who will suddenly need to be laying down (the ones who dont have OI may not understand this so much but its a real problem, even with wheelchairs for those who have OI with this illness). If its walking down a road or footpath.. where they going to lay?. This illness is just too unpredictable.
     
    Valentijn likes this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hospital-type trolleys?
     
  20. Hip

    Hip Senior Member

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    I think the idea that @redviper mentioned above, that we could come up with some interesting formats for online demonstrations or manifestations, is a also very good one:
    I get the distinct impression that the significant web presence of ME/CFS patients on forums like this, in the comments sections of newspaper articles, and in blogs, has done a great deal of good, creating more public and scientific awareness of ME/CFS, and more awareness of the specific problems faced by ME/CFS patients, such as the very low levels of biomedical research and biomedical funding for ME/CFS, and the backwards and mediaeval perspective of psychologists who believe in unscientific somatoform notions of illness, and who try to apply this ridiculous somatoform quackery to ME/CFS.

    Even over just the last two or three years, I get the impression that there is increasing interest in ME/CFS, and not from these quack somatoform psychologists, but from legitimate scientists who have a biochemical perspective on the disease of ME/CFS. I think this increasing interest of legitimate scientists is due in no small part to the efforts that ME/CFS patients have made in detailing and explaining the condition of ME/CFS online.

    So our online presence on forums and in newspaper article comments sections has worked to very good effect, and if we can devise ways to expand our online presence further still, this I think will pay further dividends.
     

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