Sunday, February 13, 2011

Civil Rights

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.