Letter to the CAA

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N.B.: It should be noted that in this letter, which I have sent to the CFIDS Association of America, Inc. (CAA) on Monday, February 9, 1998, I do make criticisms of specific people. These are not intended to be inflammatory or hurtful. The criticisms are embedded in my analysis of what I think has gone wrong with the CAA, a feeling I've had for a long time. And when I learned of their dire financial crisis I began to think of those criticisms in terms of what is currently happening, wondering if there was a relationship.
I think so. Hence this letter. I have no hidden agendas. I am not putting forth any other organizations though I welcome the existence of different ones. I personally am so taken up with matters of illness and poverty that I couldn't even imagine seeking, for myself, any position of power.
My purpose is to try to bring some light on what might be the problem with the CAA and what direction it should turn in, and why.
For the good of us all.
Judith Wisdom
A PWC for more years and harder years than I any longer care to see written for my eyes to gaze upon. My well self seems much closer, and I prefer to retain that image, if only just a fantasy.

_______________________________________________________________________________

JUDITH FLEET WISDOM
[letterhead removed]

February 7, l998

The Board of Directors
THE CFIDS ASSOCIATION OF AMERICA, INC.
P.O. Box 220398
Charlotte, NC 28222-0398
ATTN: Vicki Carpman Walker
Dear Vicki:
Though this letter concerns the current crisis at the CAA, I am writing you because of the three folks at the CAA that I have in the past any anything directly to do with, you are the one who was the most accessible, decent, and comprehending. In a word, I feel, that though this letter is intended for the entire board of directors, to whom I wish you to pass this on before your next general meeting about the current crisis, I feel I want it to fall into your hands (heart and mind) first.
Though in a very fundamental sense it matters little what my background is, for this matter affects all PWCs similarly, regardless of their education and careers prior to falling ill, I am enclosing my resume because it will reveal to those who don't know this about me, that I have a good bit of experience and training not in business matters but in sociology and medicine. And it is that background that is relevant to what I want to use to make the points I feel important to the current crisis.
As you may or may not know, there has been a lot of positioning and rhetoric on the Internet groups about the CAA's crisis. I tried to participate, made several statements, got some good responses, but I didn't like what was happening and couldn't continue. This is not an unimportant matter to the issue of how to get the voices of PWCs heard. I have long been worried about the Internet as a place to have real political PWC dialogue, but it is not the issue I want to take up here.
The Internet discussion of the crises has in part been sane, but so much of the material has been so full of pomp, circumstance, and narcissism (not all--but too much) that I can't read it without feeling my gorge rising. And in some places the discussion has been cut off. So, aside from Marc Iverson's letter and a few informative and thoughtful pieces I read on the Net, I haven't read a lot of the material. I skimmed it and suspect I haven't lost a lot of hard information for not having gone through it with a fine tooth comb. I just wanted the board to know that the basis for my comments really come from my sense that something was wrong at the CAA even before I heard the shocking news of the financial crisis.
Long before I ever suspected that the CAA was in trouble financially I often worried about two central things: (a) that as an organization I saw a number of signs that your approach to helping our cause was to take on the trappings of respectability (oft called "professional"), presumably because the illness itself lacked respectability and because maybe you thought that the powers that you had to deal with would be more impressed if you were more like them than if you seemed a bit raggle-taggle ("grass-roots" was the word incorrectly used on the Net to refer to this, whereas "grass-roots" has as its essential meaning an organization whose structure emerges and is controlled by the people it represents; i.e., not how slick or well-decked-out it is, though there is often a correlation; (b) I have long been terrifically concerned with your emphasis on attitude and psychological coping of PWCs to the detriment of giving the time, money, and journal space to the very basic, concrete social and financial needs of PWCs, who have an illness where the cure isn't around the corner and many of us (me included) are going down the tubes with each passing month and year. (I am writing a serious article on this and shall have it ready quite soon and will send you a copy though I am sure it will not be deemed short enough for THE CHRONICLE, though sometimes you have so many psychological coping articles that this could take the place of all of them. In it I talk about the severe, and I really mean severe, limitations of those coping articles, but I won't preview my argument here. I mention it only to tell you that I think this has been a very serious misstep of the organization and is not unrelated to your being, in my view, quite out of step with the grass-roots PWCs problems of everyday living, and issue that my housing article attempted to break some ground with back in l995 but which I couldn't get the CAA to give any support to at all.)
What I am saying is that the mentality of respectability and being like the establishment from which we seek to get help has removed you from fighting the tough problems that face far too many PWCs as we wait for "the cure."
Let me go further. For one, these two issues do speak to expenditures--the cost of the operation.
I, personally, am overwhelmed with dealing with figures concerning my own scarily impossible "budget." It is horrible. And I have never been particularly good about budgets, though I can deal with them when I have to. So, I am not going to go over the specifics of your budget. Just its spirit. (Yes, Virginia, budgets do have spirits.)
I get the FIBROMYALGIA NETWORK. It is a much less slick and probably a far less expensive publication. When I read it I don't feel I've gotten less than I have from THE CHRONICLE, pretty as THE CHRONICLE is by comparison. I actually want to like THE CHRONICLE more and think at one time I did. But not for a long time. It is almost the prettier and slicker it got the more content-less it got. I would receive it; be excited; and once having read through it find I was bored and learned very little.
Before I fell ill, I was very much in the world of high-powered professionals. I HAD to dress like them and be like them in many ways. Though, interestingly, many of the female physicians often dressed VERY informally. Though not the men, interestingly. So it is not as if I'm deeply into raggle-taggle. I know about looking respectable and professional. And acting so. I spent hours at high-powered physician conferences. And, believe me, as a woman and a non-physician I knew eyes were upon me. I had to be more professional than thou. But despite that I tried to maintain a critical eye, for it was my critical eye that was utterly essential to what I could offer them. It was my ability to combine my understanding of and ability to participate in their world with my ability to know that of the patient's world, many of whom were from modest backgrounds. To do that I simply couldn't fully identify with the mentality of the doctors who were my colleagues and whose acceptance I needed. (It wasn't easy!) But it is relevant to what an advocacy organization has to do also.
I also know something about political activism. Both in Philadelphia and in my wonderful North Carolina life in Chapel Hill I was very politically active.
What is interesting is that the very years I was most active were the sixties. And from a sociological/socio-cultural historical point of view our culture has developed a huge tolerance for a large variety of styles as a result of the enormous upheaval that got its start in those days. The result is that as in many serious fields of endeavor, many professionals in medical research and even clinical folks are very informal. A legacy of the sixties is that countercultural style has been absorbed into the culture. In sum, the need to appear respectable, take on the external trappings of respectability, be it in the look of your journal or how you dress (and the salaries you need to dress that way) have relaxed.
A good example is the AIDS activist movement. I am not a student of it by a long shot, but I have watched on TV many discussions by various AIDS activist groups, say, talking with Anthony Fauci, M.D., and others of his ilk. That is, fancy, high-powered, well-positioned professionals. And the AIDS activist folks, mostly from the gay community, often showed would show up in raggle-taggle outfits, though not always, and behaved in what you would call a "non-professional" manner. Yet, because the content, the substance of their arguments were, while often quite angry or radical, well-informed, people like Fauci engaged with them with considerable respect and admiration. And it went both ways. Some of the angriest and pushiest of the AIDS activists showed undeniable fondness for members of the establishment. Not at first. It took time. But it happened because the professionals had listened to activists, heard them beyond their outfits or behavior, opened up a serious dialogue with them, included them. The professionals knew these guys were serious and very committed and not about to be co-opted. They demanded to be taken seriously even when what they were asking for was a good bit more than the professionals had in mind. Maybe even dreamed of. And this occurred despite the absence of ties.
Let "ties" be a symbol of respectability. (Women--I'm a feminist. Don't come down on me. But with AIDS activism I am primarily talking about men and what is considered for them respectable in dress and professional attire. Hence I am, for simplicity, going to use "ties" as a symbol not a reality.)
I feel the CAA, or should I say, I have long felt the CAA has been too concerned with ties. And I worried that this wormed its way into your politics. That you took on the attitudes and desires of the establishment by wearing ties just like they did, and that kept you from opposing them or moving them far enough and fast enough. And I am talking about both the CFIDS medical "community" and the government.
I frankly was appalled when Anthony Komaroff, M.D., and you caved in over the change of name. Appalled. Why? Because it was insupportable. Dr. K. laments the name on the one hand, to us. To PWCs, where he is professionally safe from any chance of being called unscientific. But when it comes down to it, where is he? And, more importantly, where are you? Hanging on his ideological coat tails.
There are so many diseases the there is still so much not known about that have names that stand up rather than stigmatize. And there is so much already known about our disease to give substance to a name that would invite respectability.
And if something really solid later comes down the pike, we can change the name again. Where is it written that a name change can only be made once? Or that everything must be known about the disease for it to have a non-stigmatizing name? Especially when the name brings so much suffering. And not just to patients. I think more doctors would get research grants if they were applying to study about a disease that sounded worthy.
Enough about that. The point is that I felt that was one among many things you have done that showed evidence of not toughing it out. Of not being on the cutting edge of opposing establishment entrenched cautious positions. When it comes down to it, though Komaroff is a helpmate, he is very much concerned with his stance in the general medical community and won't make moves that might invite any criticism. Actually he could mount a fine argument for a name change based on peer-reviewed literature. He could get a gaggle of other physicians together to stand with him. And if he won't, you should make it tough for him and other docs not to insist on a name change NOW.
By trying to be too much like those we really have to push you have been far too cozy with the enemy. Or with friends, like Komaroff that have their own private concerns, like their careers. If they can't or won't be radical, PWCs MUST. If not us, who???
By being professional and respectable you have been co-optable (and co-opted). And despite the progress that has occurred we have gotten far too little.
Vicki, do you know what has happened to my life. It is kaput! I fear becoming a bag lady. I now have a new game. To see how long I can stretch the days between hair washes, so I don't have to use up shampoo. And when I wash my hair, the other game I have (I don't, you see, lack for games, I lack for fun games) is to see how very little shampoo will actually get me enough lather. I have all sorts of games like that. That is called coping with impoverishment. And I and other PWCs can usually figure that stuff out all by ourselves. What we can't figure out is how to increase our disability allowance so we don't have to, when sick, turn ourselves into a pretzel with worry and development such black games. I am neither alone in this or the worst case. And, I still get letters from that article. They get me sick.
And what has my advocacy organization done to prevent this?
Which is not to say I don't feel affiliation with the CAA. When I first fell ill in l980 (April 10, l980) there was nothing. Later there was that organization in Portland run by someone whose name I am not sure of--Gidget Faubion I think.
But, Vicki, how ever much the CAA has have meant I have increasingly found myself losing confidence in it. I don't like reading poems and being told about PWCs who are fairly well-heeled and are learning to make adjustments to their restrictions by having their househusbands wheel them through the art museum. I can figure that out all by myself. Or go to the supermarket that has a stamp machine and a ATM machine. I can really figure that out and so can most PWCs. And, besides, I had to sell my car and now can't shop for I can't bend, carry, etc.
Besides, there are many who don't have that sort of income, or house-husbands, or cars. And we too figure out lots even with our much reduced resources. Necessity is indeed the mother of invention. I don't need to read infinite articles on how to cope. What I need is concrete solutions. And I need you to have gone to bat for them long ago.
I want articles telling me what you are doing to raise SSDI income. Get more help with housing subsidies. Get vouchers to pay for household help for independent living (I have to have a helper. My city provides none. I need a voucher to pay for her. She is cheap but too expensive. I am scared. Who will clean my bathtub, change my sheets? I need you to get Medicare to provide drug coverage. Get supplement coverage plans for an illness where the supplements prescribed are humongous.
I see nothing of that.
And though you personally were utterly lovely to work with, truly, on my housing article, you know I fought to get it in. Fought. The only other article of its sort was done several years back and was a very unscientific survey that went nowhere. I was in touch with its author. He sent me the results. I even called some of the people.
I don't know if you all know why you received less money this year. I wonder if it is because people are starting to feel as I have.
That looking at THE CHRONICLE get more gorgeous maybe they think, as I have, you are spending too much on fluff. That the content of your journal is too much fluff. That you aren't demanding enough of the CFIDS prominent doctors within the entire community of doctors. (See my critique of the September l8 conference on the web at http://www.best.com/~cfids/wisdom/conf.html.)
Your journal, though beautiful looking, must be cut to black and white and on less expensive paper. I don't know about the now famous letter opener and what that's about, but maybe some office and salary expenditures really must be looked at. I'd like to see a list of salaries for the CAA paid staff. I have worked for organizations dedicated to "causes." And the staff was paid in part by psychic income because there weren't funds for competitive salaries. And they got good people anyway.
I am not against you. I would actually be sad if you went under. You have been good to me in giving me a free sub every year, and I have appreciated it. And I do think of you as a center. I have lamented that lately unlike a few years ago you have not had the cutting edge medical stuff in your pages. Again, THE CHRONICLE now seems more fluffy and self-promoting or often obvious (and thus inane though well-intentioned probably) advice giving for folks who, instead, need concrete help not attitudinal shifts.
You do not have to dress like Art Lawrence (I don't know how he dresses!) or Steven Straus (I don't know how he dresses either), or the female equivalent. To impress them. I know that like I know my own name. I wouldn't say that if I had any doubts. This is, after all, my cause. Why in the world would I want to mess it up?
I passionately ask you to address these things. I passionately worry that Marc Iverson is adamantly opposed to the gist of my sentiments. And that deeply worries me for the CAA. That the person who started it may be the cause of its demise.
This letter, though it contains criticism, is written in the spirit of constructiveness. That's why I wrote it to you. Because I like what I know of you and could only write such a letter to you, Vicki. Though I want this circulated to the full board.
I am thinking of making this a bit public if I can find a venue. Roger has banned me forever and ever from his lists. I don't have my own web page. The sweet man who puts my things on his page often might not feel sufficiently sympatico with my sentiments here to do so. But maybe he will. I will try CO-CURE. But they are often loathe to put on anything that might be considered a flame. And I have criticized several people here, which might disqualify it. I'll find out.
I am hanging in, as they say. Re my own life. I am gutsy. But my life is extremely hard. Not just from the illness, which has gotten so much worse. But the money. I don't know how I am going to pay for my medicines and food. I have had to stop my bottled water and am dropping Medigap, which might eliminate one important doctor. Not good. I never thought this would happen to me. On days when I am well enough to get some relief from all the worry and go to a movie I now cannot afford it. I can't afford to rent videotapes.
Your organizations shouldn't allow this. If I knew you were fighting for me, knew you understood I was one of many, I would feel that you were on the right track and suspect that it would be reflected in reduced expenditures for your operation and increased attractiveness of patrons.
This country is rotten to those of us with chronic illnesses that disable them. And your organization should have been fighting harder to prevent this sort of decline. Getting wheeled through the art museum, I would argue, is simply, though wonderful, not possible or easy, when your main worry is how to pay the rent and pay for medications. And those patient assistance programs, while they make a dent, are very limited.
Like so much in our society they don't address the problem. Just a symbolic piece of it. Thus it is your job to make that known. Be loud and insistent about it. Risk being a little unprofessional. Bother men like Komaroff and Art Lawrence if necessary. Radicalize them. Fauci has been radicalized by the AIDS wild men. Catch their ears and eyes rather than blending in.
Be tough in your content even if a bit raggle-taggle in your look.
Sincerely,
Judith Fleet Wisdom

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