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

[Hip]

It took the mass demonstrations of the gay community in the 1980s to get governments to stop burying their heads in the sand, and to deal with HIV/AIDS by instigating a full research program into that illness, which eventually uncovered its etiology, and led to the creation of drugs that made HIV/AIDS a treatable disease — a disease that now, thanks to this research, you can live a full and almost normal life with.

It is clear that what the ME/CFS community needs to do is organize a series of similar street demonstrations, as such demonstrations are extremely powerful means of getting attention. The main obstacle to undertaking these sort of street demonstrations is the fact that many ME/CFS patients do not have buoyant enough health to participate. Walking along the city streets for a few hours would stretch many ME/CFS patients' energy reserves beyond breaking point, and all the noise on the street may be overwhelming for noise-sensitive patients.

So I came up with an alternative idea that makes it possible — and in fact easy — for us ME/CFS patients to demonstrate in the streets, without exhausting ourselves, and without exposing ourselves to too much noise or commotion:

The idea I had is to form a mass demonstration using our cars.

Instead of hundreds of us marching along the streets on foot, hundreds of ME/CFS patients could instead take to their cars, and slowly parade along the streets in a motorcade, and/or just have a "sit-in" in the street, sitting in our cars, engine off, to occupy the street en masse.

Just as in a marching demonstration, where people carry banners and placards, we can cover our cars with banners and placards to get the message across.

This can also be an enjoyable and sociable occasion, where we get the chance to meet other ME/CFS patients. We can bring food and drink, we can bring our smartphones and tablets to keep us amused. We can bring family and friends with us in the car. And we can invite ME/CFS luminaries, famous ME/CFS doctors, etc, to come along, so that the press can get good interviews.

These demonstrations can become not just one-offs, but yearly events, in order to maintain pressure on the government.

Of course, as with all demonstrations, these things have to be coordinated with the police; but I can see no problem in getting permission for this. It is our democratic right to demonstrate, and this right of demonstration must extend to disabled people.

Gay protesters, July 5th, 1985, campaigning for research into HIV/AIDS. Source: here.

 

[Nielk]

Intriguing, novel idea, Hip!

 

[Kati]

I like that a lot! Decorate the car/ add messages. Wear ear-plugs. Use horns. . Drive real slow around town.

 

[SOC]

Interesting idea. However, I'll bet that experienced advocate demonstrators would tell us that using cars depersonalizes the illness, which is not something we want. Witnesses need to see people, not an annoying traffic jam, in order to have the positive emotional reaction we want them to have. Wheelchairs would be a much better vehicle than cars to get our message across.

Demonstrations are all about the emotional message. Get it wrong and we seriously screw up our advocacy. We don't want pajamas, pillows, and laying around which only reinforces the false "lazy" stereotype. We don't want to be out of sight, which is where we are already -- out of sight and out of mind. We want witnesses to have to look us straight in the eyes -- to feel that we are normal people just like them. We want them to feel that it could easily be them, or a loved one, standing (sitting) there hopelessly ill with no support.

I suggest that a better image would be many, many wheelchairs with patients holding signs to show what they were doing with their lives before ME destroyed them -- Physician, Engineer, Mother, Teacher, Electrician, College Student -- with an overarching banner saying something like, "This Could Be You".

 

[Hip]

I suggest that a better image would be many, many wheelchairs with patients holding signs to show what they were doing with their lives before ME destroyed them -- Physician, Engineer, Mother, Teacher, Electrician, College Student -- with an overarching banner saying something like, "This Could Be You".

True, the wheelchair might make a stronger impact, and the face-to-face personal contact with the public does have a deeper emotional effect. But what made me think about doing it in your car is that this is far easier to do. I mean, if someone said to me that there is a ME/CFS car demo happening right now, even at this short notice, I could quickly scribble out a banner, stick it on my car, and drive down to join the demonstration. It's this easy-to-do, jump-in-and-go approach that I think would encourage good numbers of ME/CFS patients to join in. Hell, it's so easy, I'd be happy to do weekly.

Though I agree that creating a traffic jam might actually result in annoyance rather than public support.

So on reflection, perhaps a better approach might be not to form a motorcade, and not to block a street with cars, but instead get everyone on the demonstration to drive their car round and around a specific very small part of city, where the government buildings are located, with banners on the car. Honking our horns as we go (as @Kati said above, we can wear ear plugs).

If thousands of ME/CFS patients did the same thing at the same time in the same area of town, people would see our cars and our placards everywhere. One in every five cars on the roads might be one of ours, if we all drive round and around the same small area of the city. We could saturate the area with placards and banners. We'd take over the place! But we would not be blocking anybody's way, so it should create intrigue and interest in onlookers, but not create any inconvenience or annoyance for the public.

Thought it it does not have to be either/or. Some patients might prefer to demonstrate by wheelchair, others might find driving their car in the said manner a better option for them. Indeed, a dual approach might have even more impact, with people seeing the cars carrying banners, and then from curiosity talking to the nearby ME/CFS patients in wheelchairs who are flying the same banners.

 

[*GG*]

We might have to wait a couple of years for this, the media is not going to cover anything that makes the gov't look bad, especially with Obama in the White House! Look at all they don't cover now, expensive gas, lousy economy etc..

They don't cover the war dead, even though Dems voted to go to war also, and there have actually now been more deaths under Obama in Afghanistan than under the "Evil Republican" Bush! Don't get me wrong, I think both parties suck! I just buy into the dogma that the Dems are looking out for us "little sick weak" people.

If so, why are thing not improving? They just like to pay us lip service and say hay, we don't want to cut waste and abuse which actually might help programs last longer! Except when elections start rolling around to get you to jump on their bandwagon, not this kid, sorry

Obama said he was going to improve the VA back in 2008 before being elected, our war heros no less, so what makes you think they are going to care about some unseen poplulation? Sorry to be a Debbie downer, I have more hope that some philanthropists are going to help us out in the near and far terms!

Look at that article by the NYT on Billionares and science! Now there is some real hope, let people keep more of their money so they can donate it as they see fit, that's another reason not to weigh down our economy on crap that doesn't work or have positive results for the dollars we spend!

We can put more costs on our economy in the hopes of stopping "man made Global Warming", or whatever they call it these days. But if India and China do not join the game, the increased temps are going to supposedly happen anyways, and all we are going to do is hurt our own economy. So much for Global Cooling and the we are running out of fossil fuels canards!

We will have to wait until 2017 or later, so heres to hoping Hillary doesn't win in 2016!

GG

 

[Hip]

An ME/CFS demostration would not make the government look bad, just as the HVI/AIDS demonstrations did not make the government look bad. And the idea of such a demonstration is not anti-goverment, but rather to make both governments around the world and the public aware of this very neglected, otherwise invisible disease. It's making ourselves visible.

Certainly though, the epicenter of executive power is shifting away from government a little, and now billionaire philanthropists are increasing getting involved in major projects that were in the past the preserve of governments. For example: Bill Gates and his amazing campaign to eradicate poliovirus from the world. (If only he would turn his hand to eradicating poliovirus's sister virus: coxsackievirus B; then the incidence of most new cases of ME/CFS would likely vanish, as well as type 1 diabetes, which is also strongly linked to coxsackievirus B).

In addition, crowdfunding campaigns are another way that executive power is shifting away from government; and in this case, the executive power is being transferred directly into the hands of the public, which is a true advancement in democracy. I think there is a great future for crowdfunding, not only in the case of ME/CFS, but for the human race in general.

So as an ME/CFS community, we should definitely be making use of these new avenues of power and influence — crowdfunding and billionaire philanthropists — as a means to lever executive power and get things done. But a good old fashioned public demonstration is always beneficial. Such demonstrations would likely be noticed by billionaire philanthropists too.

 

[Little Bluestem]

How about a sit-in? People could gather in some public space, after acquiring any necessary permits. They could have signs on their cars and put up more in the gathering space. Those who needed wheelchairs could have them. If practical, have a video about ME running.

 

[Hip]

How about a sit-in? People could gather in some public space, after acquiring any necessary permits. They could have signs on their cars and put up more in the gathering space. Those who needed wheelchairs could have them. If practical, have a video about ME running.

That could work well too, especially on warm summer day.

Though the thing to figure out is why ME/CFS patients have not done much in the way of demonstrations and protests in the past. I hardly ever hear about an ME/CFS street demonstrations, yet you'd thing think that with this disease being so ignored and maligned, patients would readily take to the streets in protest. So I can only assume that there are physical and perhaps moreover psychological reasons why ME/CFS patients don't readily organize and attend demonstrations.

It is important to identify these reasons, because then we may be able to come up with some demonstration formats that would be easy and even attractive for ME/CFS patients to participate in.

I know that in my case, I have several psychiatric comorbid conditions that arose alongside my ME/CFS, including anxiety disorder (now in remission), depression, anhedonia, blunted affect, and severe ADHD. All these tend to make me shy way from large social gatherings. And although I don't get physically exhausted from exercise (I can still jog a mile without any PEM repercussion whatsoever), social activities for a just a few hours will mentally exhaust me to the point of numbness, and I become unable to function mentally. So I tend to shy away from social activities, other than those that take place online. But I imagine that every ME/CFS patient will have their own reasons why they may be less than keen to attend a demonstration. If we can examine these various reasons, as mentioned, we may be able to come up with a a demonstration format that is ME/CFS patient friendly, and that ME/CFS patients might even enjoy attending.

 

[myshkin]

With the insidious creep of anti-protesting laws in the UK and the abuses of the Prevention of Terrorism laws over recent years, an armoured car might be more appropriate.

Legitimate public demonstration in the UK has been virtually banned. The full force of existing legislation and numerous inventive ways it is likely to be used hasn't been fully demonstrated yet, it hasn't needed to be. I have no doubt though that the plans are already in place and will be ruthlessly put into action should there be any likelihood of any demonstration being likely to be successful.

Enough has been seen though to show us that mobility and speed are likely to be required skills for any street protester wishing to demonstrate beyond the bounds of police approval of routes and locations. With the tactics of mass assaults and kettling, and with water cannons on the way for this summer, the ability to quickly disperse, move and regroup will be very important.

Another problem with a demonstration with vehicles is the fact that many of those affected and wishing to protest, won't have cars. The situation in the UK for anyone suffering a severe disability and without independent means is that for the majority, dire poverty is only a year or two away.

My own situation is far from the worst but after being unable to work for 3 1/2 years and now being dependent on benefits, my reserves financial as well as physical and mental, are totally exhausted.

I now live in worse conditions than I was born into in the slums of the 1950's. eg, frequent days of hunger due to withdrawal or delays to benefits. No heating whatsoever through 2 winters. Strict rationing of water due to accumulating arrears with water co. (1 flush per day, and 1 bath pw...), Frequent days without electric or gas due to no money for meters. And on....

As I said, not at all unusual circumstances here in the UK. A car is way out of my league these days and would be way down my list of necessities should my circumstances improve. I can't drive anymore anyway.

There have been small scale demo's in cities not too far from me that I would have liked to attend but my current finances wouldn't even cover a few £'s fares to get there. Another hidden aspect of the isolating and debilitating effects of disability and it's resultant poverty. Effective loss of the right to protest.

Another problem with vehicle demo's would be the relative ease with which they could be immobilised and blocked. Although that in itself could be a potential advantage by way of the resulting disruption to surrounding road traffic.

An advantage of a vehicular demo might be the ease of surreptitious assembly. Well organised and coordinated, a sizable demo might magically appear out of what at first seemed just normal traffic.

The way I see things, serious demonstrations of public dissatisfaction may be the only avenue to change left open to us. Increasing state abuses of position and legislation and the increasing neglect of democratic responsibility are leaving very few options open.

I regret that the time for direct action may well have arrived and here I am, flat on my back!

 

[Hip]

Legitimate public demonstration in the UK has been virtually banned. The full force of existing legislation and numerous inventive ways it is likely to be used hasn't been fully demonstrated yet, it hasn't needed to be. I have no doubt though that the plans are already in place and will be ruthlessly put into action should there be any likelihood of any demonstration being likely to be successful.

I don't think a bunch of us feeble ME/CFS patients are going cause the kind of disruption, violence and property damage that occurs during say an anti-globalization or anti-capitalist demo. I don't think any ME/CFS patient is likely to behave in such an antisocial manner, which is the main concern of the police have. The police are not going be worried if a bunch of weak semi-housebound patients apply to form a quiet demonstration in their wheelchairs. If anything, the nature of our protest would likely elicit sympathy and support from the police. Can you imagine the police or authorities banning a march to raise awareness of say breast cancer? There's no way they would. They are not going to ban a rally of people campaigning or raising awareness for a medical condition.

Another problem with a demonstration with vehicles is the fact that many of those affected and wishing to protest, won't have cars. The situation in the UK for anyone suffering a severe disability and without independent means is that for the majority, dire poverty is only a year or two away.

That is unfortunate, and there are going to be patients who don't have cars, and who don't have any friends or family with cars who be willing to drive them. So this would represent one category of ME/CFS patient that is unable to attend due to lack of transport and/or finances. However, as long as there are enough patients who do have access to cars or transport and who are willing to participate, then we should be able to mount an effective demonstration with sufficient numbers.

An advantage of a vehicular demo might be the ease of surreptitious assembly. Well organised and coordinated, a sizable demo might magically appear out of what at first seemed just normal traffic.

Also, I am not even sure if such a vehicular assembly would fall under the category of a street demonstration. I have never seen anything like this. So it may be that we would not even need permission for such a vehicular demonstration. We could just go ahead and do it. Jump in our cars and go.

 

[myshkin]

Perhaps your experience of police and their behavior at protests are different to mine Hip. You certainly have far more faith in them than I have.

We may also have different definitions as to what constitutes "anti social" behaviour in this context.

As the law in the UK currently stands, all demonstrations are effectively banned until prior approved by the police is obtained. Obviously, they will not approve anything that is likely to impact on the plans of their political masters. So sterile, static demonstrations behind walls of antagonistic police down some unseen side street are about all we can hope for here.

"Under the Public Order Act, the police do have specific powers to control assemblies. Two persons can constitute an ‘assembly’. A public place is any highway (including the pavement) and any other place to which the public or a section of the public can have access."
http://www.yourrights.org.uk/yourri...est/static-demonstrations-and-assemblies.html

An increasingly popular revenue generating scheme here in the UK which might be relevant to any motorised demonstration deemed in any way "unlawful", might be the confiscation and sale of property (car?) used in the pursuit of a crime. The crime in this case being unlawful assembly. Although you ask an interesting question with does an assembly of vehicles constituting a street demonstration.

Some examples of police "sympathy" with disabled protesters in recent years. :-

BBC interview wheelchair user and cerebral palsy sufferer Jody McIntryre after he was dragged from his wheelchair by police on two separate occasions at the anti-tuition fees protest on the 9th December 2010 in London.

As might be expected, the police were later cleared of any wrongdoing.

Police recently forcibly removed disabled protesters from outside Downing Street after protesting against the government’s welfare reform proposals.

Banners containing slogans such as “entitlement not exploitation” and “welfare not war” were waved by members of the Disabled People’s Direct Action Network (DAN), ahead of the third reading of the Welfare Reform Bill later this month.

http://www.mdctrailblazers.org/news/283_accessibites-police-remove-disabled-protesters

DPAC and UK Uncut activists picketed the DWP HQ in Whitehall to protest against the government's Work Capability Assessment. Shortly after protesters got into the building a large TSG group stormed the crowd, injuring a disabled man.

http://www.demotix.com/news/1417646/disabled-protesters-injured-police-dwp-protest#media-1417595

Disabled protesters arrested at state Capitol

SPRINGFIELD, ILL. — Several disabled Illinois residents who were protesting potential budget cuts have been arrested at the state Capitol.

Secretary of State Police handcuffed and removed the residents from the Capitol rotunda on Monday evening. Police did not immediately return calls seeking comment and more details.

http://www.bnd.com/2014/05/26/3226486/disabled-protesters-arrested-at.html

Bolivia's disabled clash with police over subsidies

Dozens of disabled people have clashed with police in Bolivia during a protest calling for higher state subsidies.
Several protesters were hurt as they tried to break through a police cordon in the country's main city of La Paz.

Riot police used pepper spray to prevent the demonstrators from entering the presidential square.

http://www.bbc.co.uk/news/world-17151453


Disability benefits campaigners clash with police outside the Department for Work and Pensions

Footage shows protesters gathering outside the Department of Work and Pensions building where several scuffles with police ensued.

http://www.telegraph.co.uk/finance/...outside-Department-for-Work-and-Pensions.html

The UK incidents have so far been relatively low key. But so have been the demonstrations. There is little doubt that the full draconian force of the law will inevitably be brought to bear on any larger scale protests. These people are willing to let the disabled suffer and die alone in silence, cracking heads with batons is mere sport for them.

On the question as to just what constitutes a legitimate and appropriate level of response to the current state abuses of the disabled I aren't sure. I will say though that I consider it my social duty to do all I can to oppose them.

What the legitimate response of a concerned citizen should be to state murder is I am still considering.

I suspect far more forceful action than polite requests for mercy might be required before we see any relief. This isn't happening to us by accident or incompetence. It is part of a considered and well planned policy of the withdrawal of welfare benefits to non financially productive citizens. They are not going to turn around and say "sorry, we didn't realise".

I will support any actions in opposition to these murderous policies, if I can get there that is.

 

[Hip]

@myshkin, you are presenting a completely distorted and incorrect picture of what happens in rallies raising awareness of medical conditions. Do you really think that for example the police are going run in and beat up all the people walking to raise awareness of breast cancer in these walks taking place in 8 cities this year and next!

What we want is something similar to this. These breast cancer walks are also fundraising for research, and this is something that ME/CFS patients could do also. The ME/CFS community are already engaged in crowdfunding of research, and so we might be able raise research funding through a walk or rally, as well as raise awareness.


If you go to a rally where there is a major outbreak of violence against the police, or property damage, of course the police will invariable go in hard against the protesters. That may be your own experience, but its not the idea I have in mind for a ME/CFS patient rally, which should planned as a very civilized affair.

 

[myshkin]

My experience is more of violence by the police Hip. Thats the point.

I do of course wish all success, and hopefully no violence, to the "walks" you mention.

My thoughts were in direct response to your calls "to form a mass demonstration using our cars", which seemed to indicate a degree of civil disobedience and potential for conflict rather higher than " people walking to raise awareness of breast cancer". I would almost guarantee that any such demonstration in the UK would be met by police violence.

Please excuse me if I have misunderstood, I wasn't trying to counter your idea, I was actualy trying to engage with your thoughts as to what might be done.

I do hope asking nicely might bring results, I just doubt it very much. They know exactly what they are doing.

 

[alex3619]

Car based protest, and truck based protest, has a long history in Australia. If I recall accurately its usually done with a very slow moving cavalcade ... it doesn't stop, but clogs traffic in key areas. Moreover they often, again if I recall correctly, ask people who support them to honk their horns.

Its not just not being able to afford cars though. Many of us cannot drive - in my case I know how, but I am too sick to drive. One sanction that might be used is also to reevaluate our licenses, and suspend them etc.

A discussion a few years back here on PR suggested something similar to the hands used in breast cancer protests, each one with a name attached. I would suggest wheelchair cutouts instead. These can be stuck to vehicles, or stuck into soft ground on sticks, or stuck to objects. Each one represents someone who wants to be there but cannot be.

 

[Hip]

My thoughts were in direct response to your calls "to form a mass demonstration using our cars", which seemed to indicate a degree of civil disobedience and potential for conflict

The "mass demonstration" relates to trying to attract a large set of attendees; in other words, trying to come up with a public manifestation concept and format that enables and attracts a good number of ME/CFS patients to attend. As mentioned, there have been very few ME/CFS demonstrations / walks / rallies / marches in the past, no doubt in part because many of the more severely affected patients can't walk for more than 10 minutes. So it seems that the standard format of public demonstrations makes it hard for many ME/CFS to attend. So we need to understand why this is, and we need to come up with new demonstrations ideas and formats that are ME/CFS-patient friendly.

Mass numbers of attendees would have a much higher impact than a handful of patients, so a high attendance is important. However, any form of orchestrated aggression or violence would leave a very bad impression about ME/CFS patients in the mind of the public, and that bad impression would likely linger and damage the ME/CFS cause for years to come.

Many of the public already erroneously think that ME/CFS patients are malingering, lazy good-for-nothing individuals; if you then add aggression or violence to that bad image we have, we would lose even more public support. Over the last decade, it seems to me that the public is slowly getting a better and more accurate understanding of how awful ME/CFS really is, and they are thus becoming more sympathetic to our plight. So we want to build on that good image, rather than tarnish it with aggressive behavior that would stick in the public memory.

Don't get me wrong: many ME/CFS patients do feel a sort of "why me" anger about the fact that they became ill, and effectively lost their lives to a housebound or bedbound stupor. And patients do feel anger about the fact that this disease is so ignored, so under-estimated in its severity, and so under-researched by medical science. As is well known and well documented, the disability insurance industry carry a good portion of the blame for this, since they have always tried to influence the official disease definition of chronic fatigue syndrome, to incorrectly make it into an "all in the mind" psychosomatic condition. This benefits the insurance industry, because they then do not need to make disability payments to ME/CFS patients. But a good portion of the blame also goes to some members of the general public — those people who erroneously think that ME/CFS patients are malingering, and erroneously think that ME/CFS is just a trivial condition that you might just "snap out" of.

So the purpose of the sort of demonstrations I have in mind is to raise a more accurate awareness of the severity of ME/CFS in the eyes of the public, government, doctors and scientists, many of whom have still not even heard of ME/CFS.

But we need good ideas about creating public manifestations that ME/CFS patients are able to attend.

I also think we need to engage with the more healthy section of the ME/CFS community. There is a huge variation in the severity of this this disease, and while there are those with ME/CFS who are bedbound or housebound, others with ME/CFS are fit and able enough to work, albeit with great difficulty. It's these more healthy ME/CFS patients that should be capable of attending a public march or demonstration. So we need to get the more healthy ME/CFS patients interested in this advocacy.

 

[Hip]

Its not just not being able to afford cars though. Many of us cannot drive - in my case I know how, but I am too sick to drive. One sanction that might be used is also to reevaluate our licenses, and suspend them etc.

I know what you mean. Two or three years ago, I found driving very difficult, and spent months on end never even touching the wheel; though now my ME/CFS has improved, and I am able to drive reasonably well.

It would be interesting for ME/CFS patients to bring up this subject of a public demonstration with their friends and family, and ask them, just hypothetically at this stage, whether they would be willing to be the driver for a few hours in such a demonstration. These friends or family could either do this with us ME/CFS patients in the car as a passenger; or in the case of severely bedbound patients, friends or family might just have to drive to the demonstration without the patient, thereby acting on the patient's behalf.

 

[caledonia]

I like this idea - I think it has lots of possibilities. I like the "flash mob" aspect of it.

 

[ukxmrv]

Someone else suggested hiring participants for demonstrations in London. The idea was to approach schools. unis etc and advertise canvas for students to help out. It's not been possible to get a good turn out of ME people for demos. Every now and then AFME organises ones or individual people (like Nicki Strong did reccently) but patients numbers are never large. The main problem as I see it is that the media will not cover these events.
When disabled people protested in London and occupied around the Oxford St Tube (nothing to do with ME) the media largely ignored it.

 

[Gingergrrl]

Interesting idea! I am also not well enough to drive at the moment although I certainly hope to again in the near future. The problem is that we are spread out through so many different countries, how would we get enough people to one place at the same time. Also, when something clogs up traffic (at least in L.A.) people get extremely annoyed at the protestors and don't care what the protest is about, they just want to get past the traffic jam.