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Why did I write yesterday's post? Because we are allowing ourselves to be distracted, energies wasted, by small things. We are in a battle for something much larger - basic human rights.
That is what we are REALLY fighting for. The right to be free of the propaganda and censorship that has stood between our illness, and treatment, since 1988.
Our governments - but most energetically, the governments of the United States and the United Kingdom, have deliberately sought to deny us respect, care, and treatment. Why? The insurance lobby. The cost of treating us. Making a name for themselves. Pathetic, pitiful reasons to ruin the lives of so many.
NIH allocates (at most) $4 a person a year - one percent of what NIH spends on Multiple Sclerosis, hardly an overfunded disease. The UK has just issued special research funding - but who will get that funding? Does anyone really doubt where it will go? More "studies" that portray The Disease as the product of "inappropriate illness beliefs". Imitation research, that blames the victims for their own suffering. More censorship of biomedical information, and propaganda dressed up as psychiatry.
The CDC says we are sick because of some vague childhood abuse. They have joined Peter White in "discovering" that a large number of us actually have major psychiatric illnesses. And CDC's website praises the UK's NICE Guidelines, even including a link - those guidelines that condemned so many sick people to going without any medical care at all out of fear of being forced into Cognitive Behavior Therapy and Graded Exercise. Now the UK is changing the rules for those who are too sick to work, who need government assistance. Shirkers all. How long before the US follows suit?
We deserve more. We deserve an honest appraisal of the peer-reviewed research. We deserve doctors, and treatment centers, and real research. Some have been waiting three decades for this. Some have been living their whole lives, stricken as children, imprisoned in this disease - and all government has to offer them is insinuations that they are sick because they were abused, or because they somehow secretly want to be sick. All government has to offer them is the threat of being removed from their homes. They deserve better. Their parents deserve better.
Our countries can do better.
The campaign of constant psychobabble is just that - a campaign. It is designed to portray us as "the other" - as "different." As not deserving of the medical choices a person with MS is entitled to. As not deserving of the medical choices a person who blew out his knee skiing, is entitled to. As not deserving of the choices a chain smoker gets when lung cancer sets in.
That is the recipe for denying human rights: portraying a person as "the other", not "one of us.". Not human, therefore without rights. In Anglo-American parlance, without the rights of free citizens.
But we are human. We are citizens. We deserve our rights as civilians, as members of the larger community. Our civil rights.
We have the right to be treated as human beings, not "weaklings," as Wessely loves to portray us when not in front of scientists.
All we are asking for is the truth. Disagree over it, come up with alternative theses - but start telling the truth.
Our enemies are the people in power who have portrayed us as "undeserving." Who censor the truth and issue propaganda in its place.
That's a big fight, and it's not easy. It calls for strength. We have that strength. It has been honed in the fires of our pain, suffering, confusion, and despair. Our isolation. Our loneliness. Our dashed hopes. And our cares for each other. We have somehow kept on, in spite of all they have thrown at us.
We cannot win this battle unless we stand together against our real enemies. We can squabble like any family does. But we must stop hurting each other. That also means the strength to allow disagreement - as long as disagreement does not turn into harassment.
We have to stand up to CDC. Stand up to NHS. Stand up to NICE. Even if standing up has to be done from a gurney.
Stand up as young people have in Tunesia and Egypt.
But stand together. With one common goal: we refuse to be invisible any more.
I have a quote from Martin Luther King, Jr., from a speech he gave at the end of the march from Selma to Montgomery, Alabama. In four years, his courage in speaking out for his rights would end in his death. He knew that was likely, but he still spoke up.
Keep this in your heart so that you remember what we are really fighting for. We are fighting for our rights as human beings. We are fighting for our freedom from invisibility. And we are fighting for the truth.
King said:
"I know you are asking today, ‘How long will it take?’ ...
“I come to say to you this afternoon, however difficult the moment, however frustrating the hour, it will not be long, because truth crushed to earth will rise again.
"How long? Not long, because no lie can live forever.
"How long? Not long, because you shall reap what you sow.
"How long? Not long, because the arc of the moral universe is long, but it bends toward justice."
Not long. We will not be invisible forever.
Beautifully spoken, Mary. Thank you.
ReplyDeleteThank you so much for yesterday and todays blogs, so true, eloquently spoken.
ReplyDeleteDear Mary,
ReplyDeleteI have started writing my own blog post again today after what has transpired not only in the last 18 days in the world , but sadly what has transpired in the last week within our own fractioned list of advocates whether individual or groups. I just happen to come across your newest unexpected Early post and I will at the end of my blog link to yours as it is basically saying what I am saying but in another way and I HOPE that together we can WAKE some body UP. Bless you and I agree with you 100%.
HOW LONG ? also depends on HOW LONG we are willing to be quiet and not stand UP and tell the truth en masse. LOUDLY and CLEARLY. There is no need to be threatening as in violent, but certainly legal boycotts or civil actions are not to be counted out. We MUST make ourselves HEARD or we will continue to get walked ON + Over. Thank you for taking the time to express your feelings here today.
We can only HOPE "Those who desire CHANGE "will LISTEN and ACT accordingly." ASAP
Thanks, Mary! Powerful and well-chosen words.
ReplyDeleteNow I'd like to see a portion of this submitted to the CDC and NIH... with a few thousand signatures attached.
Best wishes,
Elsie
Mary - Great posts (today and yesterdays) and yes, it is time for us to stand up (whatever that looks like for each of us) and to allow ourselves to become visible.
ReplyDeleteThank you for having the strength to what needed to be said.
Bless you.
thanks a millionfor the truth to be spoken!! i have been suffering with fibro. for 2yrs. now.dr.s want to call to a head problem and play the "pass the buck" with my life. i could write a book of all the mistreatment from the medical people.people must think that i'm a crazy person to come these stories.but they are all true.
ReplyDeletethey say that they don't let a horse live in misery but they let people.i am tired ans weak of fighting for someone to help me in all this.--tammy s.
Mary, in Canada, health care and access to health care is a human right. Ihave thought many times to file a compliant to the tribunal and I know I need to review what I wrote and complete the forms and send it away.
ReplyDeleteI feel we all need to fight as hard as you can and in every way you can. Use what you got, do it while in bed, use social media, but also be sure to reach key people, congressman, health minister, politicians, college of physicians. Your one single action is needed!!!
We have to stand up to CDC. Stand up to NHS. Stand up to NICE. Even if standing up has to be done from a gurney.
ReplyDeleteWell said Mary, but we also have to stand up to the CAA, their record of failure as a so-called advocacy organization, and Kim McCleary's outrageous $180,000 salary a year; a direct slap in the face to every one of us who is too incapacitated to work and living in dire poverty.
The people of Egypt won because they refused to cooperate with the powers that be. We too must refuse to cooperate with those in power. That includes the CAA.
We do not have a national patient advocacy/support organization in the US. Just because something has "national" or "American" in it's name does not mean it represents us nationally.
ReplyDeleteThe usual structure of a national organization in the U.S. is like this:
National Office
/ | \
State and Regional Chapters
/ | \
Local chapters
This organizational structure mimics the federal structure of our government, and is necessary because of the sheer geographical size of the nation and the diversity of the population.
What we have is just a few national offices, without the roots. The CAA was asked several times to allow this type of structure and they refused - because Kim wants to be the sole locus of power. It has a Board of Directors, but anyone who can put up with the dismissive treatment of patients always quits.
Conversely, we have a number of really great state organizations - Wisconsin, which presages the name CFS, New Jersey, Connecticut, Massachusetts, among others.
PANDORA is really a South Florida organization, again, not a true national.
It is my personal dream that the existing state organizations which already have local chapters join together and create a true national organization, with representatives from these state organizations forming the Board of Directors, perhaps eventually 75% of the Board, but always maintaining control.
Then we would have a real national organization.
Mary Schweitzer
To tammy64 - looked around and there are some nice fibro sites on Facebook. Start with Fibro Duck. That will help. And about 10% of people with frbro also have ME or CFS.
ReplyDeleteMary
BRAVO MARY!
ReplyDeleteWe need to Unite and Turn our Weaknesses into Strengths!
Right on Mary! thank you for this amazing post. This is a civil rights and human rights struggle!
ReplyDeleteWhen I hear they are funding MS and other diseases 100 times more than ME/CFS, I can't help but think they are discriminating against everyone with ME/CFS.
ReplyDeleteIn an equitable world, we would get equitable funding. Everything else is discrimination. It's our right to be treated fairly, especially when it's our tax dollars paying for it all. It's time to step forward, from the back of the bus.
Thank you for the article, Mary. It's always good to have a social scientist on board.
Mary, I've only recently begun reading your papers, posts. You give voice to things spinning in my head that I can scarcely verbalize. Yours is a powerful voice for this illness, thank you. Your posts are enlightening, give me heart during a period wherein it is near impossible to find heart. If one of the powers that be could experience this illness for a mere day, let alone months on end, years, we might well see some change, be the recipients of some real help. No one knows, including doctors, what to do with someone who does not get well. Consequently, rather than research, make an effort, they quietly fall away. If there is anything I can do that will be helpful to our community's efforts, I will gladly do it. I am good at "standing up". Sometimes.
ReplyDeleteI have the MLK excerpt posted on my refrigerator, along with anything else I can find that will shine some light into a mind gone largely dark.
A tremendous thank you.
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