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Invisible No More.. I think this way we're forcing them to see us, instead of politely asking
i dunno, maybe I'm too rough
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SEATTLE MEAction Protest - What to put on a Banner?
- Thread starter Justin30
- Start date
i dunno, maybe I'm too roughThe male pattern badness quote – that was only spending in a single year and is very old data we should not use.
We should also not use the HIV quote. I think it is great to compare what we are trying to do to the legacy and history of the movement for HIV/AIDS treatment, a movement I derive a lot of inspiration from, and as an example of what the government can do when it is forced to make a crisis a priority, but we should not pit ourselves against other disease groups. It's a great way to lose our growing number of friends and allies in that movement. It is also a great way to alienate journalists. There are millions of HIV+ people around the world who are still dying due to lack of access to medication. There are people in the US who still don't have the services and treatments they need to fight opportunistic infections. Many HIV+ patients are chronically ill (with cognitive dysfunction, lack of capacity, some homebound, disabled, etc.)
I completely understand the sentiment, but I think there are much better messages.
We should also not use the HIV quote. I think it is great to compare what we are trying to do to the legacy and history of the movement for HIV/AIDS treatment, a movement I derive a lot of inspiration from, and as an example of what the government can do when it is forced to make a crisis a priority, but we should not pit ourselves against other disease groups. It's a great way to lose our growing number of friends and allies in that movement. It is also a great way to alienate journalists. There are millions of HIV+ people around the world who are still dying due to lack of access to medication. There are people in the US who still don't have the services and treatments they need to fight opportunistic infections. Many HIV+ patients are chronically ill (with cognitive dysfunction, lack of capacity, some homebound, disabled, etc.)
I completely understand the sentiment, but I think there are much better messages.
aaron_c
Senior Member
- Messages
- 691
@JenB Somehow I thought the male pattern baldness thing was recent. Thanks! Do you know how much research funding we are set to receive in 2016?
I'm betting that you have more experience with this than I do, so could you say something about our "growing number of friends and allies?" It seems to me like everyone who is involved either has ME/CFS or is close to someone who does. From my limited point of view, I don't see us expanding outside of that box much.
As I am sure you know, my intent was not to alienate the HIV/AIDS community. This was one reason I didn't compare our funding to HIV/AIDS--I didn't want to set up a dichotomy where it looked like I was asking for a slice of their pie. My concern, though, is that probably the major obstacle we face in getting funding is the perception that our illness is not very uncomfortable, not very debilitating, and in the end not very real. Even if people begin to accept that our illness has a physical basis--and that will be slower coming than we would like--we still look and talk more or less like normal people. Even at our worst, we will never look like HIV/AIDS patients in the last so many months of life, though our experience can sometimes be comparable. So how do we convince people that our suffering is real? A picture is worth a thousand words, but our pictures mostly say "You just woke me up." Which is why I want to (metaphorically) borrow images from HIV/AIDS.
Although I understand that some people familiar with AIDS could become offended, I think that others could become alerted to a situation for which they have a particular sympathy. I would like to think that, in their shoes, I would feel this way.
I'm betting that you have more experience with this than I do, so could you say something about our "growing number of friends and allies?" It seems to me like everyone who is involved either has ME/CFS or is close to someone who does. From my limited point of view, I don't see us expanding outside of that box much.
As I am sure you know, my intent was not to alienate the HIV/AIDS community. This was one reason I didn't compare our funding to HIV/AIDS--I didn't want to set up a dichotomy where it looked like I was asking for a slice of their pie. My concern, though, is that probably the major obstacle we face in getting funding is the perception that our illness is not very uncomfortable, not very debilitating, and in the end not very real. Even if people begin to accept that our illness has a physical basis--and that will be slower coming than we would like--we still look and talk more or less like normal people. Even at our worst, we will never look like HIV/AIDS patients in the last so many months of life, though our experience can sometimes be comparable. So how do we convince people that our suffering is real? A picture is worth a thousand words, but our pictures mostly say "You just woke me up." Which is why I want to (metaphorically) borrow images from HIV/AIDS.
Although I understand that some people familiar with AIDS could become offended, I think that others could become alerted to a situation for which they have a particular sympathy. I would like to think that, in their shoes, I would feel this way.
AIDS activist Peter Staley is a friend of our movement and a friend of mine (see: http://www.canaryinacoalminefilm.com/blog/2015/12/20/a-waterfall-of-love-at-good-pitch-new-york and http://www.meaction.net/peter-staley-interview-videos/) In addition, there is a member of ACT UP New York, recently diagnosed with ME, who is very involved in the Millions Missing protest and has started doing outreach in the AIDS community on our behalf to activists, providers, researchers. So this is an important time with potential for new ally-ship which I am very excited about!
Aaron, I don't mean to single you out – a lot of people have referenced the Nancy Klimas quote in the past, myself included – but as I go out in the world more and learn more, I understand how even if Dr. Klimas made the comparison, that it is potentially hurtful to positive people and harmful to us. While I completely understand the sentiment behind it and it is absolutely right that "the major obstacle we face in getting funding is the perception that our illness is not very uncomfortable, not very debilitating, and in the end not very real," in my experience communicating about the disease and my film to non-PWMEe, that quote, even though coming from an immunologist with experience treating both patients is misleading in terms of the actual situation of many HIV+ people. It certainly won't be understood outside of our community. I think there are other and better ways to convey how debilitating the disease is and how misunderstood.
Re: baldness, it isn't so much that our $$ is increasing as it is that baldness isn't really a disease category that the NIH tracks in its spending allocation or a program, so it might be that in one year there was a study in which more was spent on it, that isn't true every year or in most years, and may only have been true in a single year, a decade ago. Hope that's clearer?
By telling our story over and over again. By making films. By showing the reality of the severely ill, who *do* look how sick they are: https://www.washingtonpost.com/nati...d6189c-4041-11e5-8d45-d815146f81fa_story.html And most importantly, by organizing, building power, and never giving up.
Aaron, I don't mean to single you out – a lot of people have referenced the Nancy Klimas quote in the past, myself included – but as I go out in the world more and learn more, I understand how even if Dr. Klimas made the comparison, that it is potentially hurtful to positive people and harmful to us. While I completely understand the sentiment behind it and it is absolutely right that "the major obstacle we face in getting funding is the perception that our illness is not very uncomfortable, not very debilitating, and in the end not very real," in my experience communicating about the disease and my film to non-PWMEe, that quote, even though coming from an immunologist with experience treating both patients is misleading in terms of the actual situation of many HIV+ people. It certainly won't be understood outside of our community. I think there are other and better ways to convey how debilitating the disease is and how misunderstood.
Re: baldness, it isn't so much that our $$ is increasing as it is that baldness isn't really a disease category that the NIH tracks in its spending allocation or a program, so it might be that in one year there was a study in which more was spent on it, that isn't true every year or in most years, and may only have been true in a single year, a decade ago. Hope that's clearer?
By telling our story over and over again. By making films. By showing the reality of the severely ill, who *do* look how sick they are: https://www.washingtonpost.com/nati...d6189c-4041-11e5-8d45-d815146f81fa_story.html And most importantly, by organizing, building power, and never giving up.
@JenB did you get a chance to cast yourvote on the poll?
http://forums.phoenixrising.me/inde...tle-banner-poll-2-banners-will-be-made.44415/
http://forums.phoenixrising.me/inde...tle-banner-poll-2-banners-will-be-made.44415/
aaron_c
Senior Member
- Messages
- 691
@JenB One quote from your interview with Peter Staley seemed particularly relevant:
We may have to disagree on when it is appropriate to spare people's feelings (even fellow sick people) when speaking truth. And as much as I strive for clarity in my communication, I do not think it is practical to insert caveats wherever anyone might misunderstand anything I say. Obviously there are people with HIV/AIDS who are in worse straits than many people with ME/CFS and I have a great deal of sympathy for them--but the quote is a generalization, and I don't think anyone should have to explain that. Unless you think Dr. Klimas was wrong?
I would need the benefit of experience to judge whether the slogan I suggested went too far in generalizing Dr. Klimas' comments--perhaps it would be better just to use part of what she said verbatim and comment on frequency and funding in another sign.
I am interested that you have found the comparison falls on deaf ears. I wonder if this is because by making a comparison we appear to be whiny, or if this is because people just have not heard it enough to believe that our illness could possibly rank anywhere near medicated HIV/AIDS in severity? Genuine question. But if the problem is that people just haven't heard it enough to believe us, I'm not sure that's a great reason to stop.
I hope that I have not stolen too much of your energy today. I wish you the best.
You have been very diplomatic, and I appreciate that. It is certainly problematic that we do not have the connection that knowing each other would bring. This is tiring!
We may have to disagree on when it is appropriate to spare people's feelings (even fellow sick people) when speaking truth. And as much as I strive for clarity in my communication, I do not think it is practical to insert caveats wherever anyone might misunderstand anything I say. Obviously there are people with HIV/AIDS who are in worse straits than many people with ME/CFS and I have a great deal of sympathy for them--but the quote is a generalization, and I don't think anyone should have to explain that. Unless you think Dr. Klimas was wrong?
I would need the benefit of experience to judge whether the slogan I suggested went too far in generalizing Dr. Klimas' comments--perhaps it would be better just to use part of what she said verbatim and comment on frequency and funding in another sign.
I am interested that you have found the comparison falls on deaf ears. I wonder if this is because by making a comparison we appear to be whiny, or if this is because people just have not heard it enough to believe that our illness could possibly rank anywhere near medicated HIV/AIDS in severity? Genuine question. But if the problem is that people just haven't heard it enough to believe us, I'm not sure that's a great reason to stop.
I hope that I have not stolen too much of your energy today. I wish you the best.
aaron_c
Senior Member
- Messages
- 691
One thing distilled from all this is that I want to find a good way to communicate just how sick we are. How about:
It lacks some poetry and in my case both overstates and ignores symptoms...at least when I take supplements. But I do want to tell people that ME/CFS implies more than--as one acupuncturist recently told me--"you're tired a lot."
PS @Justin30 I realize it is probably too late to add this to the survey. And that it's probably too big for your parents to put on a sign anyhow. At this point I'm just using the thread to brainstorm slogans whether for today or a year from now. I hope you don't mind!
Having Myalgic Encephalomyelitis feels like having the flu, a hangover, periodic food poisoning, and exhaustion beyond anything you knew. ME is a real disease, it's time for real funding. #MillionsMissing
It lacks some poetry and in my case both overstates and ignores symptoms...at least when I take supplements. But I do want to tell people that ME/CFS implies more than--as one acupuncturist recently told me--"you're tired a lot."
PS @Justin30 I realize it is probably too late to add this to the survey. And that it's probably too big for your parents to put on a sign anyhow. At this point I'm just using the thread to brainstorm slogans whether for today or a year from now. I hope you don't mind!