justinreilly
Senior Member
- Messages
- 2,498
- Location
- NYC (& RI)
The CAA has never been able to grasp that the social conditions most of us endure involve a very high degree of alienation and marginality. Instead, despite its protests to the contrary it has consistently served up steaming portions, in the memorable phrase of a cfs activist,of happy clappy feel good yaya, delivering false hope when what was needed was compassionate grounding in the truth. My first cfs doctor, on my initial visit, gently but firmly told me that I was not going to get better for the foreseeable future and that I should apply for social security. I was sad,of course, but this was the first time a circuit of true understanding had been closed by someone trustworthy, since I had gotten sick. It was a huge relief.
By contrast, the CAA has seldom played that role for me, of validating important, genuine perceptions, and resolutely opposing all that would denigrate or hurt this extremely vulnerable community. It allowed the devil through the door, when it made the decision to give the psychological crudity of Peter White et al a place at the table. Conceding anything to the Stephen Strauss's or the Bill Reeves has been catastrophic. Instead of a robust opposition, they were useful idiots, providing the cover these cunning and arrogant men and institutions needed for their ongoing campaigns of denigration and lip service.
Which gets me to the current focus of the debate. How could a term like kinesophobia make it into a document purporting to represent the needs of patients, if the CAA itself hadn't desired to speak in the language of the "big boys", the voice of authority. This was not meant to be seen by patients but to be applied to patients. They assumed passivity on our part, and since any phobia Is cognate with delusion, self deception.
Authority and "expert" knowledge is a vexed subject with people with this illness.
That has been the game: who has cognitive authority and whose cognitive authority counts the most. I've just marked the kickoff to my 23rd year with m.e. And while I appreciate the efforts of our doctors on our behalf I also believe that they are not doing us any favors. They are acting decently, courageously, ethically. That should be celebrated but does not require obsequious submission or fawning gratitude. We DESERVE the best medical care.
Appealing to authority to justify giving exercise advice, which engenders no benefits but endangers what fragile limb we happen to be perched on, is unacceptable. In addition to being dangerous, it recapitulates the ur trauma haunting m.e., the relentless skepticism and disbelief many of us endure everyday and the ideology of false illness beliefs and exercise avoidance that is its close companion. When so little is known about energy metabolism and its catastrophic dysfunction in us, the appeal to authority is ludicrous. It's both prudent and wise to keep a close eye on any organization whose blind spot is its relation to its own craving for authority and dominance, whose displays of leadership have been extremely unconvincing, and whose will to power, by accommodating the worst forces at play in m.e./cfs history, has stranded us in limbo. Eat your Wheaties and support the WPI.
I like. Looking forward to more insightful postings, akrasia!