Chapter Nine
Hidden Disability
by Bev Jo and Linda Strega
Part 1
OPPRESSION IS SICKENING
Bev Jo
Some have wondered why this chapter is in our book about Lesbian Separatism and Radical Feminism. Since our book is about having as much equality among women as possible and recognizing what harms us and what divides us, this information is essential, and is even more timely decades later, seeing how patriarchy has harmed and continues to harm women physically, mentally, and emotionally. Understanding some of the causes can help protect us.
We’ve also tried to include information to protect and improve health, especially since we’ve seen too many friends die and be disabled from possibly preventable diseases and pharmaceuticals and unhealthy eating recommendations. I know so many women who have worked very hard to eat what they don’t like and give up what they love, based on popular and accepted misinformation, and end up seriously damaging their health.
Since we published our book in 1990, many more Lesbians and other women we know, of all ages, have some form of chronic illness, chronic symptoms, and/or chronic pain. Many who are under fifty also have hormonal disruption, probably from growing up exposed to xenoestrogens (the toxic chemicals that mimic true estrogens) – from food cooked and stored in plastic (including Teflon pans), pesticides, and soy (carcinogenic and toxic to the thyroid). Girls are increasing going into puberty at earlier ages. (When I was a girl, puberty started around twelve but more recently it’s been said to start around ten, but now some girls are beginning puberty at seven. This makes little girls vulnerable to getting pregnant from rape as well as affecting their health in other ways.) http://www.nytimes.com/2012/04/01/magazine/puberty-before-age-10-a-new-normal.html?pagewanted=all&_r=0
Doctors’ and alternative healers’ advice to be vegan or vegetarian, to eat soy (which is now in almost all processed food), toxic trans fat/hydrogenated oil, and high carbs, and to eliminate healthy organic saturated fat and meat has been disastrous for health, including leading to increasing numbers of women having hysterectomies and/or oopherectomies (removal of ovaries). I’ve noticed that vegans seem to have the most health problems,1 but many women are damaged in ways that women were not in the past. The hormonal disruptions also have severe mental and emotional effects, which affects relationships, including in our online Radical Feminist community.
Do not believe the myth that people live longer now. Remove statistics for decreased infant mortality and women dying in childbirth, and it becomes clear that people do not live longer.2 Women also have far worse quality of health now. Tombstones from hundreds of years ago, as well as genealogical records, show extremely long-lived women in the past. Alice Walker wrote about her great, great, great, great grandmother living to 125. A number of other women who had been slaves also lived to well over a hundred,3 in spite of the extreme stress of their lives. http://blog.encyclopediavirginia.org/2012/02/11/convention-of-former-slaves/
Many of the forms of hidden disability that I’m seeing among friends are increasing, and it’s like solving a mystery to find out what is really happening to us. I believe there are multiple causes: toxic chemical and radiation exposure (including medical X-rays), synthetic, poisoned, and GMO food; polluted water and air; and new or engineered pathogens. The toxic and radiation exposures alone also account for the epidemic proportions of cancer, which was extremely rare when I was a kid. It’s amazing that anyone is still alive, actually, or that all people don’t have cancer, like nuclear physicist, John Gofman,4 said about the levels of radiation that people are now exposed to. (If any doctor tells you than an “X-ray is only like one plane trip,” they are lying. Doctors know the truth. They also all know that any radiation causes heart damage.) http://www.ratical.org/radiation/inetSeries/nwJWG.html
I’ve been disabled with a mystery illness for more than half my life, since 1981. It has been called Myalgic Encephalomyelitis, Fibromyalgia,5 Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome, etc. Now I wonder about the cause being the bacteria spirochete, Borellia Burgdorferi/Lyme disease and/or the accompanying dozen co-infections also spread by Ixodes genera ticks.6
Then in the mid-Eighties, I also became increasingly reactive and sensitive to toxic stink that men and their corporations have spread throughout our environment as they continue inventing new “fragrance” poisons, which are completely unregulated and which never stop smelling horrible. It’s a clever way for men to mark territory while making money, from dirty perfumed laundry products to the countless and unnecessary “personal care” products mainly aimed at women consumers. My health was already damaged by growing up in Cincinnati with many factories spewing toxins, but now I still can’t escape Proctor and Gamble, thousands of miles away, because people are paying to pollute our neighborhoods through their drier vents with the disgusting stink of products like Tide and Downy, making our neighborhoods smell like factories. It’s a patriarchal/male nightmare affecting the health of all of us, against our will.7
The terms for people who react sooner to the toxins that are harming all of us is CI (Chemical Injury), MCS (Multiple Chemical Sensitivity) or EI (Environmental Illness, which implies the environment is making us sick). But most people just blame themselves and say they have “allergies,” which is like saying that lung cancer from cigarette smoke is an allergy, and personalizes what is actually a political issue that affects everyone’s health. Not to mention these toxic products are polluting the air, earth, and water where they are manufactured, used, and disposed of. It’s amazing how many people claim to care about the environment, but don’t consider refusing to support the companies producing such nasty filth. It’s one of the simplest, easiest ways to help the earth, save money, and protect your own health.
When I first became sick, my lover at the time also had the same symptoms that felt like a flu that wouldn’t go away: deep fatigue, low grade fever, swollen glands, pain, aching, and some friends also had similar symptoms, so I suspected a pathogen, with perhaps the addition of toxic exposure, to explain why some recovered and some didn’t. However, Lyme and the co-infections, transmitted through Ixodes genera tick bites could look like exposure to the same pathogen if we picked up ticks around the same time when hiking or working in the hills (which is exactly how Lyme was first discovered in the Seventies, by a cluster of kids with rare juvenile arthritis.) No one publicly seemed to know about Lyme in 1981. Or at least no doctor we saw mentioned it.
I’ve also since learned about the damaging effects of metabolic syndrome, which includes polycystic ovaries, pain, etc. from eating as the doctors demanded. One fat-phobic idiot Lesbian doctor I saw was horrified I ate avocados because of the healthy high fat content.) Mainstream doctors’ recommendations to eat low fat actually have increased heart disease, cancer, arthritis, dementia, etc.8 Stress, like oppression, also increases high blood sugar and insulin resistance. Many of us probably also have symptoms of metabolic syndrome, but that doesn’t account for other symptoms or for so many of the symptoms to match.
It took me a while to identify as disabled, because my chronic illness isn’t visible. Also, most able-bodied women seem to try very hard to believe that I’m no different from them. Sometimes it’s hard even for me to take my sickness seriously because I’m fairly mobile and, when under pressure, I’m can still function, although I feel much worse for a long time after. But I know the difference between how I am now and how I was previously, and I’m lucky to have friends who also know that difference. Most importantly, my closest friend, Linda, is similarly disabled. We give each other valuable support and recognize that each other’s illnesses are real.
When we first published our book in 1990, I’d already been to nine doctors, four acupuncturists, two naturopaths, and five homeopaths. I tested positive once for mononucleosis, but was told it couldn’t be chronic, so it was ignored. Most of the doctors told me I wasn’t sick since they couldn’t find anything wrong, which I later found is common with illnesses causing hidden disability, so it look me years to get a diagnosis. CFIDS used to be called “The Yuppie Disease” because statistics showed that a lot of middle-class people have it. The fact is that these are usually the only people who can afford to see the average of eight doctors that it takes to finally get some sort of diagnosis. Those who are too poor to afford doctors aren’t generally listed in the statistics.
Four of the doctors I saw were sympathetic, but the rest were offensive and incompetent. I was concerned that I might possibly have a contagious disease, but the infectious disease specialist I saw assured me that a person couldn’t remain contagious after a couple of months of being sick. In fact, there many long-term contagious diseases. Another Lesbian doctor told me that there was nothing wrong with me and that I should just lose weight. (I was about 140 pounds at the time.) She told my underweight lover with identical symptoms that she should just drink coffee. Years later, I discovered that many of our symptoms match those for the early stages of leukemia and some other kinds of cancer. Certainly, you don’t want to try to lose weight with cancer since it’s a wasting disease and those who weigh more have a better chance of surviving.
I’ve heard many ridiculous, contradictory doctors’ opinions. One het woman osteopath flipped out when I told her that not all women are heterosexual, in response to her bizarre ranting that I should use birth control, although I couldn’t be more obvious as a Dyke and was at the appointment with my lover. In her crazed state of Lesbian-hatred, she said I needed female hormones, for no explainable reason.
Eventually, though, enough people became sick with similar symptoms that names for our illnesses were invented which still don’t really describe the cause.
I’m not surprised by the treatment I’ve gotten from doctors. I’m more upset by how I’m treated by other women. Since my constant fevers cause my face to look red, I’m often told I look “healthy.” They say that life is hard for everyone, and I should just try harder. They are terrified of getting sick, so they want to pretend I’m not. It’s true that all women have difficulties, but we’re also all in different states of health. Some can push themselves to extremes and use stimulants to keep going, which only works for a while.
One of the most offensive but typical comments is “we cause ourselves to be sick, so if you wanted to get well, you would.” I can’t imagine a more male-minded idea. “You create your own reality” is a useful philosophy to manipulate the oppressed. Unfortunately, it not only benefits the patriarchy, it also helps oppressive people maintain their privilege and illusion of superiority over the rest of us. If positive thinking works so well, why don’t these people visualize themselves into being less oppressive? (It’s interesting to see what happens when they become chronically ill themselves.)
Oppression adds to the severity chronic illness since physical or emotional stress makes us sicker. I’m writing this partly because I want to help prevent other women from going through the same abuse from both the medical establishment and from our own kind. You body tells you when you’re sick. If you feel sick, you are – especially in our cultures where we are pressured to ignore pain and sickness. No one has the right to tell you you’re not sick, whether they’re a doctor or a friend.
Are These Man-made Illnesses?
Lyme disease didn’t used to exist. Many of us believe that the US government created Lyme disease/Borellia Burgdorferi when they injected Ixodes genera ticks with multiple pathogens in military biological warfare experiments at Lab 257 on Plum Island, New York (as described in the book Lab 257), near Old Lyme, Connecticut. (Therefore, it’s Lyme disease, not “Lyme’s disease,” since it’s named for the location and not a doctor.) The ticks were also injected with co-infections, such as Babesiosis, Erlichsiosis, Bartonella species, Yersinia enterocolitica, Chlamydophila pneumoniae, Chlamydia trachomatis, and Mycoplasma pneumoniae, plus the newly diagnosed (in 2013) Borrelia Miyamotoi.
For those who are so mainstream or patriotic/nationalistic that they don’t believe that the US government, doctors, and scientists love to experiment on people, they should remember that the “land of the free” was built on genocide and slavery, and that giving American Indians blankets infested with smallpox virus was early biological warfare. (As recently as the Sixties, US scientists, funded by the US Atomic Energy Commission deliberately infected thousands of Amazon Indigenous people with a virulent measles vaccine that killed hundreds of people. According to Professor Turner, the same group also secretly carried out experiment on human subjects in the US, which included injecting people with radioactive plutonium without their knowledge or permission.) 8
http://www.theguardian.com/world/2000/sep/23/paulbrown
Patronizing people as “conspiracy theorists” does not change the facts about past, present, and future biological weapon use. Of course the medical history of scientists experimenting on people against their will, from Mengele to Tuskegee9 and Guatemala proves that they are not to be trusted or believed. The US government admitted to mutating viruses and bacteria, to “study their effects,” and then releasing them into urban areas such as the San Francisco Bay Area,10 which is why the theory of ticks injected with pathogens is not outrageous. Who knows what the long-term results of the known tests have been? The forgotten smallpox discovered in 2014 in a storage room in the US shows their level of criminal incompetency.
http://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment
http://en.wikipedia.org/wiki/Guatemala_syphilis_experiment
Of course Nazi scientists had Russians and other Slavic people on their list for genocide, so being paid and praised by the US government to continue the Nazi war on the Soviets would have been even more appealing to Erich Traub, the Nazi in charge of bio-weapons on Plum Island.
“Carroll’s ‘Lab 257’ also documents a Nazi connection to the original establishment of a US laboratory on Plum Island. According to the book, Erich Traub, a scientist who worked for the Third Reich doing biological warfare, was the force behind its founding….”
“….With the end of the war, Traub came back to the United States under Project Paperclip, a US program under which Nazi scientists, such as Wernher von Braun, were brought to America….A source who worked on Plum Island in the 1950s,recalls that animal handlers and a scientist released ticks outdoors on the island. ‘They called him the Nazi scientist, when they came in, in 1951 they were inoculating these ticks.”
http://www.counterpunch.org/2013/10/25/the-deadly-secrets-of-plum-island/
Annual records of the first and subsequent cases of Lyme disease from the Seventies clearly show an increasing arc spreading westward from the part of the Northeast coast near Plum Island.11 Of course the medical propaganda now tells us that Lyme has always been here, but that’s another lie. Anyone old enough knows that we never saw or had to worry about ticks or Lyme disease when going into grasslands or woods. Many of us grew up playing in woods and only began to see ticks in the last few decades. Lyme disease simply did not exist anywhere in the US before the Seventies.
There are many myths about Lyme. A friend insists that Lyme always existed because it’s also in Europe, but it wasn’t there when I was living in England and Ireland in 1997 and 1998. It came to Europe later than the US, and my English lovers in the 1990’s had never heard of it and neither did anyone they know. The European vector is the same genera of Ixodes, and is named Ixodes Ricinus because the markings on the tick are reminiscent of the patterns on castor beans (Ricinus, same as the poison from castor beans). Borrelia Burgdoferi was probably brought to Europe by an infected person from the US who then was bitten by European Ixodes species Ixodes Ricinus. It’s now killing people there. (In the eastern US, the vector is Ixodes Scapularis, while in the west, it’s Ixodes Pacificus.) Lyme is now in Asia, South America, Australia, etc. When we are gone, it will be easier to spread the lie that it’s always been here, with theories that don’t make sense, like that it was found in a 5,000 year old corpse in the Alps. (In terms of trusting scientists’ competency in recognizing illness, they are still debating if syphilis came from Euro-Asia or the Americas.)
Lyme disease is most often spread by ticks, but can also be transmitted by fleas, mosquitoes, and mites. Evidence suggests that these small arachnids and insects don’t actually need to bite you for you to become infected. Lyme disease can also be spread in other ways, such as from mothers to fetuses. (At a Lyme lecture I went to, an alternative healer was positive she’d gotten it from her boyfriend.) The Centers for Disease Control (CDC) believe that Borrelia burgdorferi can even survive the blood purification processes that donated blood is subjected to, and therefore can be spread by transfusion. The related spirochete, Borrelia Miyamotoi, discovered in 2013, is not being tested for, which means the blood supply is even less safe.
Lyme is also very difficult to diagnose because the US government commission had a conflict of interest and eliminated half the main diagnostic markers, so most people who have Lyme show up negative on the tests. This saves insurance companies a lot of money. And of course if the government accepted responsibility for inventing this illness, there would be millions of lawsuits. Again, Borrelia Miyamotoi, is likely to cause similar symptoms but will also not show up on standard tests.
A great imitator, like its cousin syphilis, Lyme is found in the brains of many people with Alzheimer’s, Parkinson’s, ALS, MS, Fibromyalgia, arthritis, Lupus, etc.12
http://www.jneuroinflammation.com/content/8/1/90
From 36 known Borrelia species 12 cause Lyme disease or other borreliosis, which is transmitted by the bite of infected ticks….
When neutral techniques recognizing all types of spirochetes were used, or the highly prevalent periodontal pathogen Treponemas were analyzed, spirochetes were observed in the brain in more than 90% of AD cases. Borrelia burgdorferi was detected in the brain in 25.3% of AD cases analyzed and was 13 times more frequent in AD compared to controls.
http://bebrainfit.com/lifestyle/drains/lyme-disease-a-hidden-cause-of-mental-decline-and-alzheimers/
http://blog.lef.org/2013/12/is-alzheimers-caused-by-infection.html
They found spirochetes in about 90% of Alzheimer’s patients, while the bacteria were virtually absent in healthy age-matched controls.
The hopeful aspect to this is that Lyme can be more treatable and less of a death sentence than some of these illnesses. (Friends who have done the best have used specific herbs.)
My ex-lover got the classic expanding bull’s-eye rash which grew until it was enormous, with multiple circles of color, and then it disappeared in a few days. If it had been on her back, she would never have known it was there. Nothing else causes that rash, yet the doctor declared that she didn’t have Lyme because the test was negative – even though I’d told her that the medical literature says it doesn’t show up in tests for at least six weeks. This idiot doctor also told us that the Western Fence Lizard transmits the bacteria, when, in reality, the lizard has a mechanism in her blood that completely kills it, leaving ticks on her free of Lyme. (Don’t expect to get correct answers from doctors – most are arrogant and incompetent, which is a dangerous combination. They killed my mother. Most people I tell her story to have a similar one where doctors killed a loved one of theirs.)
When a friend got Lyme while camping in the Sierra Nevada mountains, she said she saw hundreds of tiny black bumps on her legs, which she’d never seen before during previous Sierra camping trips, and which turned out to be Lyme ticks. If the percentage of Ixodes Pacificus carrying Lyme was even 1%, then of course that’s where she got it. Every year, the numbers of ticks and infected ticks are increasing in California and elsewhere. The East Coast, where Lyme began, havs the highest percentage of infected ticks, recently listed as 35%.
http://news.stanford.edu/news/2014/february/ticks-bay-area-021814.html
I suspect Lyme was the cause of some friends dying while diagnosed with other illnesses, such as MS. Leslie Feinberg blamed Lyme and the co-infections for her death on Nov.15, 2014. I suspect Lyme pain and depression is behind some suicides also.
Many of us believe that Lyme is incurable and is chronic.13 I know many women with Lyme, and none have fully recovered. A Rheumatoid Arthritis specialist I know says he believes it’s not chronic, but turns into Fibromyalgia — which is chronic illness. So if Borrelia encysts and hides as spirochetes do, going through stages with remissions, then who knows if it’s still there? I spoke with Lucia Hui, Senior Public Health Biologist at the California Department of Health around 2002, to talk with her about Lyme. That was before she went on an expedition to the Sierras to study Lyme and got the classic Erythema migrans rash. She knew the protocol and immediately began treatment, but years later, she was taking $1000 worth of antibiotics a month, and still sick. She’s now listed as leading Lyme support groups.
A new myth is that unscrupulous doctors and alternative healers are behind the theory of Lyme as a chronic illness for their own benefit. There are a few doctors and healers who are conning people for money, and that has always been true about chronic illness, but the majority of doctors are deliberately denying acute Lyme even when people have classic symptoms, as well as denying Lyme as chronic illness. Some doctors actually refuse to write a prescription for the more accurate test, even when the patient agrees to pay for it since insurance won’t. For those who doubt the reality of Lyme as chronic illness, I suggest going barefoot, in shorts and a short-sleeved shirt, off trail in a wooded or grassy area where a lot of deer visit, and sit and lie on the ground until you are covered in ticks. Eventually, you’ll get Lyme and then can tell us how chronic it isn’t.
Then there are the vaccines that cause cancer, like another polio vaccine that the CDC admits to:
http://www.thehealthyhomeeconomist.com/it-only-took-50-years-cdc-admits-polio-vaccine-tainted-with-cancer-causing-virus/
Some scientists believe that AIDS is a similar bio-weapons creation, although I believe the theory that HIV was inadvertently spread from chimpanzees to humans in Africa, in 1955, through an experimental polio vaccine given by greedy US doctors. There’s an excellent award-winning 2003 film now free online called The Origin of AIDS.
(http://www.originofaids.com/,http://www.youtube.com/watch?v=qWd4KblpDsc,and http://freedocumentaries.org/int.php?filmID=123), which explains how Dr. Hilary Koprowski and his research team used chimpanzee kidney cells. One of the women doctors in their group told them that their vaccine was not safe because she could see other unknown viruses in it. They ignored her, of course, because status and money were more important than health. Although Koprowsky denied using chimpanzees since that was too dangerous because of the possibility of transmission of pathogens from humans’ closest relatives, the film proves that he did use 200 chimpanzees and interviews Africans who captured and cared for them.
It’s revealing also that they gave Africans their experimental vaccine rather than people in the US.
Considering that humans have been eating primates in Africa for millennia without developing AIDS, the polio vaccine explanation makes more sense that the “bushmeat” theory, which blames the introduction of HIV into humans through contact with killed primate blood and blames Africans. Edward Hooper writes about this in his book, The River and in his article at http://www.aidsorigins.com/more-supportive-opvaids-bushmeat-hypothesis-revised-response-recent-faria-paper-science.14
Unlike other viruses, HIV, as a retrovirus, was difficult to discover, but there was pressure to do it because of the many rich European-descent men being affected. Perhaps, also, men who wanted sexual access to as many women as possible, wanted to not have to worry about such a deadly STD. There is not similar urgency with finding out what is behind the many chronic illnesses that keep appearing, even though they are devastating people’s lives and can be fatal, and certainly not when the US government could be sued, as in the case of the invention of Lyme disease and the many co-infections.
A Clean Environment Doesn’t Stink
In the years since I first became sick, I’ve grown much more sensitive to the man-made chemicals which surround us daily. My original illness has another cause, but not being able to escape toxic chemicals definitely worsens my health. And these chemicals damage all women and make some severely ill.15
Below is my separate section about chosen pollution:
UNFORTUNATELY, WE NEED AIR TO BREATHE
Support Women’s Health, Not the Chemical Industry
I want an end to patriarchy and all oppression. But sometimes, more than anything, I just want to smell clean air. Well, not really clean air, which is impossible, but air that doesn’t stink. That shouldn’t be too much to ask, should it?
It’s not even that I live in a neighborhood with factories. I grew up in one, so I know them well – toxic fumes pouring out day and night, a half block from our house. Sometimes the paint was blistered off cars in our neighborhood when the acid rain came down. At school, there was always another factory stench. Where I live now, it could be relatively clean-smelling, even in this city. Sometimes I can smell beautiful clean air from the ocean miles away, with trees and flowers on the wind, but the next moment will be a lungful of nauseating stink.
And why? Simply because of the greed of industry and the stupidity of people agreeing to be conned into paying for poisonous, dirty laundry products to pollute our air.
If we smell the products’ stink, we’ve already absorbed their neuro-toxic molecules into our lungs. I think of my friend who has already had cancer twice. She and none of us should be forced to breathe this pollution against our will. It doesn’t help that the spewers of this filth are not unreachable unchangeable corporate industries. It might be easier to accept if it was. No, these are regular people in this and every neighborhood, who choose to buy and release this poison into the air we are forced to breathe. But, again, why?
The irony is that I grew up in Cincinnati, being exposed every day to factory stink from Proctor and Gamble, one of the US’s biggest polluters. (Don’t believe their “green” industry label.) It’s like nightmare science fiction that I am now thousands of miles away and still am forced to smell Proctor and Gamble’s toxic products in our neighborhood and in the nauseating fumes pouring off people’s clothes and bodies in every public place. Even walking alone in the woods, I can smell most people from 100 feet away, with Proctor and Gamble following me.
Whenever I think I’ve discovered all the monstrous ways that men have made this beautiful planet into a nightmare, I find another man-made illogical horror.
It wasn’t until I was sick for several years that I became chemically sensitive enough to identify as “chemically injured” or having Multiple Chemical Sensitivities. We’re all injured by exposure to toxic chemicals in patriarchy, but some of us have had more exposure to pesticides or other toxins and so react sooner. Many of us who are chemically injured are considered to have an unnaturally sensitive/strong sense of smell, but in reality, we’re more like people who live closer to nature. People who surround themselves with toxic scents have damaged, deficient senses of smell. (I’ve read that people in Viet Nam could smell US soldiers in the dark from a long distance because of their toothpaste and other scented products.)
Almost everyone trivializes themselves and others by considering this health issue merely their own or others’ “personal problem,” calling our reaction to toxins “allergies.” Allergies have nothing to do with it any more than people with lung cancer from cigarette smoke are “allergic.” It is simply poison. Ninety-five percent of the ingredients in scented products are synthesized from petrochemicals and many, like benzene and toluene, are considered hazardous waste.
Most women know that factory chemical fumes, gasoline, pesticides, herbicides, natural gas, carbon monoxide, and tobacco smoke (among others) are carcinogenic, and that some can kill you outright if you’re exposed to high enough concentrations. But they often don’t realize that the chemicals they choose to wear or use in their homes are toxic: perfumes, cosmetics, scented candles, scented soap, shampoo, hand lotion, toothpaste, “cleaning” products, “air fresheners,” hair spray, chemicals to curl or straighten hair, deodorants, detergents, fabric softeners, disinfectants, etc.
Most people seem shocked that the government allows scented chemicals to be sold without testing or regulation – yet they are usually aware that the government lies to us constantly, about invading other countries, the safety of our water and food, pesticides and herbicides, hormones and antibiotics in meat, GMO and irradiated food, nuclear reactors’ lack of safety, nuclear waste, and big pharmaceutical companies’ toxic drugs, etc. Toxic scented products are made by many of the same industries, just as chemotherapy drugs are made by the industries that cause cancer. People who would never buy other products from well-known polluters happily give these corporations money when it comes to personal care and household products.
These products aren’t needed by anyone. Plain unscented soap, baking soda, and white vinegar are as effective in cleaning our homes, and unscented body-care products are better for us than scented ones. But the chemical industry is big business. Through aggressive advertising, we’re taught that we, our clothes, and our homes aren’t really clean without a strong perfumed odor. Living in a polluted world has also meant that many people don’t have much sense of smell left, so the stronger a product smells, the more people are likely to buy it.
The mania for “cleanliness” and selling unnecessary products has meant that chemists continue to develop new chemicals that are much more persistent than before and which don’t wear off like previous products. Yet it’s not like any of these products smell good, no matter how many ads (mostly aimed at women) try to convince us. They’re disgusting, and their neurotoxins damage nerves and mucous membranes so that people lose their sense of smell and therefore use more and more of the poisons — ironically dirtying their homes and bodies while believing they are clean.
In the last several years, laundry products, especially fabric softeners and anti-static strips, have become so scented that people become sick from living near laundromats or even in neighborhoods where people use a lot of them. The perfumes in these products are so strong that they spread and cling much more than the milder scents used years ago. In the US, they’re added to printers’ ink, so we’re exposed to toxins in many magazines, newspapers, mailed advertisements, and even imprinted plastic grocery bags. No matter how the manufacturers advertise their products as having a “fresh,” “natural,” “flowery,” “herbal,” or even “unscented,” these are toxic chemicals and don’t smell natural at all. Many people find their odor nauseating. But these chemicals have become so popular that it’s almost impossible to go anywhere public without being surrounded by people wearing them.
Many ailments which are misdiagnosed as arthritis or migraine headaches are actually environmentally caused. Those who react first are like the canaries that miners took into the mines to find out if there was poison gas they couldn’t smell. We may be the first to suffer the effects of these toxins, but they’re poisonous to everyone — it’ll just take a while longer for some to use up their tolerance and become sick. So please take this seriously, for our health and yours. If we say something you’re using is sickening to us, please stop using it. (It can be hard to find unscented products, but the more consumers demand them, the more there’ll be.)
Chemical injury and exposure to toxic products can cause cancer, headaches, heart arrhythmia, nausea, migraines, joint pain, brain fog, asthma, depression, irritability, insomnia, exhaustion, dizziness, confusion, panic attacks, memory loss, rashes, liver and kidney damage, vomiting, seizures, hormone disruption, immune suppression, MS-like neurological reactions, pulse and blood pressure changes, impaired vision and concentration, aggression, loss of muscular coordination, convulsions, and coma.
There’s no escape, at home or outside. The laundry products’ fumes pour into our open windows and seep in even when the windows are closed. Going to a supermarket means being forced to breathe in nauseating stench from shelves of toxic air “fresheners,” laundry products, and pesticides. But most health food stores also reek of nasty-smelling scented products, and any open food you buy also smells and tastes nasty from perfumes and other toxins.
Almost every human stinks of “personal care” products and detergent and fabric softeners. Then the airborne stench sticks to us, so we bring it home, where it affects those we live with. (After being at any public event, I can’t even wash my clothes because the stink will remain unless I hang my clothes outside for days. I also always have to wash myself to get the stench off me.)
Why do women who otherwise are very savvy about other patriarchal cons participate in this? Unless someone has lung or heart problems or has been chemically injured, they usually choose to stink. Very few don’t. They willingly pay money to apply men’s scents to their bodies, marking themselves as men’s property because they believe it makes them smell “good.” It doesn’t matter how terrible they really smell – the marketing propaganda convinces them otherwise. In reality, perfume is as romantic as hazardous waste.
The use of toxic perfumes and cleaners is a female and feminist issue, because women are the most targeted by advertising, and women are the majority victims of Chemical Injury. Men also tell women we are dirty. Also, many women feel contaminated from growing up in patriarchy and from sexual assault, as well as from voluntary contact with men, so women are obsessed with trying to be clean. For some, that even means developing Obsessive-Compulsive Disorder. Major corporations, like Proctor and Gamble, know this and direct their advertising accordingly, showing women looking crazed with ecstasy as their smell their nasty laundry products.
Peoples’ attachment to scented products shows in their trying to find “organic” scented products, but one study showed that every scented product, including those labeled organic, contained toxic ingredients. Also, be aware that many products that claim to be scent-free are not. Most stores smell so bad that you can’t even tell until you are home and your sense of smell clears that the product you just bought is scented.
Another increasing health problem is also caused by people’s choices: burning wood, garbage, etc. in their fireplaces.16 Burning is the cause of half the winter air pollution where we live. Most people in this area have adequate heat through gas or electricity, so they burn for pleasure, ignoring that people are literally dying. Having friends with asthma and congestive heart failure who are seriously affected is making me more aware of the damage from burning, but it’s also affecting the health of everyone, including animals, just as smoking does. When we can’t prevent most pollution, it’s upsetting that people selfishly choose to make the air absolutely filthy, against our will.
http://www.ehhi.org/woodsmoke/woodsmoke07.pdf:
Although wood smoke conjures up fond memories of sitting by a cozy fire, it is important to know that the components of wood smoke and cigarette smoke are quite similar, and that many components of both are carcinogenic. Wood smoke contains fine particulate matter, carbon monoxide, formaldehyde, sulfur dioxide and various irritant gases such as nitrogen oxides that can scar the lungs. Wood smoke also contains chemicals known or suspected to be carcinogens, such as polycyclic aromatic hydrocarbons (PAHs) and dioxin.
Wood smoke interferes with normal lung development in infants and children. It also increases children’s risk of lower respiratory infections such as bronchitis and pneumonia.
Wood smoke exposure can depress the immune system and damage the layer of cells in the lungs that protect and cleanse the airways.
According to the Environmental Protection Agency (EPA), toxic air pollutants are components of wood smoke. Wood smoke can cause coughs, headaches, eye, and throat irritation in otherwise healthy people.
For vulnerable populations, such as people with asthma, chronic respiratory disease and those with cardiovascular disease, wood smoke is particularly harmful — even short exposures can prove dangerous.
The particles of wood smoke are extremely small and therefore are not filtered out by the nose or the upper respiratory system. Instead, these small particles end up deep in the lungs where they remain for months, causing structural damage and chemical changes. Wood smoke’s carcinogenic chemicals adhere to these tiny particles, which enter deep into the lungs.
Recent studies show that fine particles that go deep into the lungs increase the risk of heart attacks and strokes. EPA warns that for people with heart disease, short- term exposures have been linked to heart attacks and arrhythmias. If you have heart disease, these tiny particles may cause you to experience chest pain, palpitations, shortness of breath, and fatigue.
The particulate matter in wood smoke is so small that windows and doors cannot keep it out—even the newer energy-efficient weather-tight homes cannot keep out wood smoke.
The EPA estimates that a single fireplace operating for an hour and burning 10 pounds of wood will generate 4,300 times more PAHs than 30 cigarettes. PAHs are carcinogenic.
A study by the University of Washington in Seattle showed that 50 to 70 percent of the outdoor levels of wood smoke were entering homes that were not burning wood. EPA did a similar study in Boise, Idaho, with similar results.
Saying “No” to an Exclusionary Community
Lesbian are my people. I love Lesbians with all my heart. I want us to have the best Lesbian communities possible, which is why I’m focusing on Lesbians.
Some say that it can be difficult to make Lesbian communities completely accessible, but one thing that everyone easily can do is to stop buying and using toxic scented products. They would save money, help their own health, and stop smelling bad, but most won’t consider it – even when that means they’re making it impossible for many Lesbians to be part of our community
I used to hate the cigarette smoke that was everywhere, but understood it was an addiction. What I don’t understand is why women insist on using these horrible-smelling products. Even women who are conscientious about doing other things for the environment, and would never dream of not recycling, don’t consider that buying toxic products means supporting industries that pollute neighborhoods with factories, as well as their own air space. And when they use terrible-smelling detergents like Tide, Gain, etc. and fabric softeners like Downy, they are making neighborhoods everywhere smell like factories. Many women object to other ways men mark territory, so why accept this?
Then there are women who slather on the most foul-smelling perfumes and colognes even though they know it makes others sick. Some of these products are so full of petrochemicals that they smell like kerosene or disinfectant.
“But what about people’s right to choose? We shouldn’t control what people want to do, should we?” Well, that used to be the prevailing attitude until laws had to be made to prevent people filling up every public place with toxic cigarette smoke. Even most ex-smokers are glad about that control now. The insistence on “freedom”is also behind large industries’ fracking, pollution of lakes, rivers, and ocean, as well as their spewing of factory filth into the air. Without regulations and laws, the rich do what they want, and the poor suffer and die. This is far more than personal — it’s a political issue about accessibility and the right to unpolluted air.
With cancer rates increasing, we can’t afford to play games about filling our lives and homes with carcinogenic products. And for those who say they love animals, how can they justify subjecting animals who have such sensitive senses of smell to such foul poisons? I remember when dogs didn’t get cancer. I remember when cancer was so rare that only one member in my huge extended family, which included many old people, got cancer. There is so much that we can’t control about carcinogens in our environment, but this is one source of cancer we can control and save money at the same time.
This isn’t trivial. When people with asthma can’t breathe, they can die. Even if they “just” have trouble breathing and their lungs become more permanently damaged, and then they’re forced to use steroids and amphetamines in inhalants that damage their hearts, isn’t that bad enough? Why is this being ignored for vanity? One friend who already knew that perfume is toxic came to an event, proudly saying she was “only wearing a light scent.” (It was horrible, and a Lesbian with asthma reacted immediately.) It reminds me of the addictive quality of plastic surgery. The selfish narcissism of all this is astounding. It’s very much about obeying male rules of femininity.
Women don’t stop even when beloved women singers tell their audience that being exposed to perfumes and colognes hurts their voices. Too many women will coyly announce you shouldn’t hug them if their “fragrance” is a “problem” for you, but if you remind them their products are damaging the health of everyone in the room, they usually answer, “I know.” They understand that “no smoking” sections next to smokers are meaningless, so this shouldn’t be too difficult to grasp. (One woman who insisted on wearing perfume she knew hurt others, had actually asked for money for months for her ongoing health problems, never making the connection). No one should be cavalier about this issue. Several women I knew who adamantly refused to stop subjecting others to toxic products are now so chemically injured that they can’t leave their homes.
I know women who say they want to give up their car to help the environment, but they won’t give up Tide. What is going on here? (I do not advocate women restricting their lives by giving up their cars and making themselves vulnerable using public transportation.)
It’s actually not that hard to stop buying toxic products. Women affected by having asthma or CI or MCS, or who sincerely care for the environment (and animals they live with) , manage to have completely unscented homes. Do know, though, when trying to change to safe products, that mainstream detergents marked “unscented” usually reek horribly. It’s good to follow recommendations from some of the MCS lists.
We shouldn’t have to choose between being in our Lesbian communities and protecting our health. Women who react the most severely to scented toxins should not be forced to be homebound. It is the right of every living being to be able to smell clean air and be able to breathe.
Can you consider what it’s like for those who are homebound to know they can’t even have a friend bring them a library book because the books smell so bad from being in homes with scented toxins like “air fresheners,” scented candles, cleaning products, etc. If cigarette smoke bothers you, can you imagine never escaping it? Almost no homes are safe to visit. But you’re likely to get hostility if you explain to friends why visiting them is difficult. They do understand on some level, because they wouldn’t want to spend several hours closed up in a room with a chain smoker, but somehow they take offense if you say their candle scented with oily volatile toxic ingredients is unbearable, even when unlit.
Trying to have friends visit creates another problem. Ninety-nine percent of those who say they are unscented actually reek from various products. Some of these products, like Tide, never go away. (A generous friend gave me a shirt from a Woman conference that she had washed in Tide. We hung it outside in the sun and rain for a year, and it still stunk horribly.) The bad smell also transfers to other surfaces (which is why I now always sit on a thermarest pad in public – that I am regularly harassed about using — which I have to leave outside after I go home, since it then stinks for days from being on public chairs). Before my housemate and I stopped being too afraid to make our home safe, we let a visitor sit on our couch for 2 hours – and our couch stank of Tide for over 6 months. We’ve also put down a plastic tarp on a chair for a visitor who was scented only with Gain, but the smell soaked right through the tarp and the chair stank so much afterwards that we couldn’t keep it in the house. Being in the same room with someone scented also means that you, your hair, clothes, and every bit of fabric in the room absorb the stink. Some people seem surprised at this, yet they understand and object when cigarette smoke does the same thing.
No friends’ cars are safe to be in, so I always drive. But when I’ve given rides to friends who were previously unscented, they often are using a new scented product. This happens a lot, but the worst was when a friend arrived reeking, even though we’d arranged I would drive us several hours to a women’s music event. Being in a car accentuates any scent because of the closed space, but I could smell her as soon as she arrived. She’d used a new lotion and was only mildly apologetic, but it never occurred to her that I should have said no to being trapped in the car with her all those hours. I didn’t, and was nauseated the entire time. I also know that when something like this happens it’s likely to have a long-term affect on damaging my health, plus making me increasingly chemically sensitive. She’d understood the situation, so why was the new lotion so important? She wouldn’t have dreamt of lighting up a cigarette and saying she needed to smoke. I still don’t know how to deal with this kind of thing, so I drive alone, unless I’m with a trusted friend, and even then, there are often problems.
Everyone is affected by scented toxins that we’re forced to breathe, but most don’t know it, and they attribute their symptoms to other things. Some of us end up taking caffeine, pain-killers, or other drugs, which adds to our worsening health, to make it possible to go out, so we stay a part of the Lesbian community we helped create. We always have to weigh whether the risk and the effects are worth it.
Too many Lesbians prioritize men and other non-Lesbians when being activists, volunteering, or donating. Consider that ill and disabled Lesbians get much less support than our oppressors, yet have much less resources. No one else supports Lesbians so Lesbians need to.
Making our spaces scent- and poison-free is one of the few things that we can do to make our communities safe and welcoming. No man-made chemicals smell better than natural Lesbian scent!
Endnotes
1. The Vegetarian Myth, by Lierre Keith, has excellent health information, including explaining why being vegan for twenty years permanently damaged her health, and why being an ethical omnivore, who eats pastured, organic meat is better for animal species and the environment than supporting extensive agriculture. (Most soy is produced by Monsanto.) http://www.lierrekeith.com/book-ex_the-vegetarian-myth.php
2. http://www.livescience.com/10569-human-lifespans-constant-2-000-years.html
…. The increase in life expectancy between 1907 and 2007 was largely due to a decreasing infant mortality rate, which was 9.99 percent in 1907; 2.63 percent in 1957; and 0.68 percent in 2007.
But the inclusion of infant mortality rates in calculating life expectancy creates the mistaken impression that earlier generations died at a young age; Americans were not dying en masse at the age of 46 in 1907. The fact is that the maximum human lifespan — a concept often confused with “life expectancy” — has remained more or less the same for thousands of years. The idea that our ancestors routinely died young (say, at age 40) has no basis in scientific fact….
Again, the high infant mortality rate skews the “life expectancy” dramatically downward. If a couple has two children and one of them dies in childbirth while the other lives to be 90, stating that on average the couple’s children lived to be 45 is statistically accurate but meaningless. Claiming a low average age of death due to high infant mortality is not the same as claiming that the average person in that population will die at that age….
When Socrates died at the age of 70 around 399 B.C., he did not die of old age but instead by execution. It is ironic that ancient Greeks lived into their 70s and older, while more than 2,000 years later modern Americans aren’t living much longer.
http://www.healthpromoting.com/learning-center/articles/life-expectancy
The popular media often imply that increases in life expectancy are due to the wonders of modern medicine. This is false. Increases in life expectancy are due almost entirely to a decrease in the infant mortality rate….
Infant mortality in the US has decreased from more than 100 per 1,000 in 1920 to 10.9 today. During this same time, life expectancy has been said to have increased from 54 to 74 years.
At first glance it looks like people are living 20 years longer now than in the past. But this figure is misleading because it is just an average. It could mistakenly lead you to think that in 1920 most people lived to approximately 54 years of age and that now they live to approximately 74. This is not the case.
Consider these facts. In 1920 an adult 60 years old could expect to live an average of 16 more years, to about 76. Today an adult 60 years old can expect to live 20 more years, to about 80. That is only a four-year difference that appears in the life expectancy figures.
Adults are not living 20 years longer now than they did in 1920. In fact, adults today live little longer than they did in 1920, which is before the development of the powerful modern medications that are often credited with life extension. What has dramatically improved is our chance of surviving to 60.
Lies and Statistics
Mark Twain proclaimed that, “There are lies, damn lies, and statistics.” Surely he is not alone in the conclusion that statistics don’t lie, but liars use statistics. The statistics commonly used to describe “advances” in the area of life expectancy are misleading, at best.
3. Convention of Former Slaves
http://blog.encyclopediavirginia.org/2012/02/11/convention-of-former-slaves/
February 11th, 2012 by Brendan Wolfe
IMAGE: Washington, D.C., 1916. “Convention of former slaves. Annie Parram, age 104; Anna Angales, age 105; Elizabeth Berkeley, 125; Sadie Thompson, 110.” National Photo Company Collection glass negative. (Shorpy)
4. http://www.ratical.org/radiation/inetSeries/nwJWG.html
Dr. Gofman was a Professor Emeritus at the University of California, Berkeley (Ph.D. in nuclear-physical chemistry and an M.D.) who was the first Director of the Biomedical Research Division of the Lawrence Livermore Laboratory from 1963-65 and one of nine Associate Directors at the Lab from 1963-1969. He was involved in the Manhattan Project and is a co-discoverer of Uranium-232, Plutonium-232, Uranium-233, and Plutonium-233, and of slow and fast neutron fissionability of Uranium-233. He also was a co-inventor of the uranyl acetate and columbium oxide processes for plutonium separation. He has taught in the radioisotope and radiobiology fields from the 1950s at least up into the 1980s, and has done research in radiochemistry, macromolecules, lipoproteins, coronary heart disease, arteriosclerosis, trace element determination, x-ray spectroscopy, chromosomes and cancer and radiation hazards. Starting in 1969 he began to challenge the AEC claim that there was a “safe threshold” of radiation below which no adverse health effects could be detected.
- Fibromyalgia is a term for what could be multiple illnesses. http://www.fmcpaware.org/symptoms
6. Lyme disease is an infectious disease caused by the spirochete (spiral shaped bacterium) known as Borrelia burgdorferi (Bb). Lyme disease is most often spread by ticks, but can also be transmitted by fleas, mosquitoes, and mites. Evidence has suggested that these small arachnids and insects don’t actually need to bite you for you to become infected. There is also evidence that Lyme disease can be spread by a number of other methods, including, like its spirochete cousin, syphilis, sexually, as well as from mothers to fetuses.
To complicate diagnosis, a second Borellia species was discovered in 2013. http://news.stanford.edu/news/2014/february/ticks-bay-area-021814.html
Under Our Skin: The Acclaimed Documentary about the Untold Story of Lyme Disease.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3565243/
In Lyme disease concurrent infections frequently occur. The clinical and pathological impact of co-infections was first recognized in the 1990th, i.e. approximately ten years after the discovery of Lyme disease. Their pathological synergism can exacerbate Lyme disease or induce similar disease manifestations. Co-infecting agents can be transmitted together with Borrelia burgdorferi by tick bite resulting in multiple infections but a fraction of co-infections occur independently of tick bite. Clinically relevant co-infections are caused by Bartonella species, Yersinia enterocolitica, Chlamydophila pneumoniae, Chlamydia trachomatis, and Mycoplasma pneumoniae. In contrast to the USA, human granulocytic anaplasmosis (HGA) and babesiosis are not of major importance in Europe. Infections caused by these pathogens in patients not infected by Borrelia burgdorferi can result in clinical symptoms similar to those occurring in Lyme disease. This applies particularly to infections caused by Bartonella henselae, Yersinia enterocolitica, and Mycoplasma pneumoniae.
Chlamydia trachomatis primarily causes polyarthritis. Chlamydophila pneumoniae not only causes arthritis but also affects the nervous system and the heart, which renders the differential diagnosis difficult. The diagnosis is even more complex when co-infections occur in association with Lyme disease.
https://www.youtube.com/watch?v=pqKaM_J7KDI
NonSpiral Borrelia — Part 1 — Explanation of Shape shifting and Form Metamorphosis of Spirochetes
https://www.youtube.com/watch?v=1ojq_2-HlNg
Part II — Cystic Borrelia and Related Topics Including Round Body Infections of the Brain
https://www.youtube.com/watch?v=OrLJLgoNgA4
Why the government won’t allow treatment for Chronic Lyme disease
https://www.youtube.com/watch?v=xYMezkigMWk
Dr Horowitz Lyme Disease and Chronic Illness
This is an excellent article in describing why it’s so hard to treat Lyme, why antibiotics don’t work, how there are multiple co-infections, how most bites come from almost invisible nymphs, etc. I hesitate to promote something that is selling anything, but the information is important, and the only people I know who have recovered somewhat from Lyme (their blood is still not safe for transfusion) used herbs:
Visiting physician sheds new light on Lyme disease
On a visit to Martha’s Vineyard Hospital, Dr. Nevena Zubcevik challenged conventional diagnosis and treatment of tick-borne diseases.
This past Friday, Dr. Nevena Zubcevik, attending physician at Harvard Medical School and co-director of Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown (SRH) traveled to one of the nation’s front lines in the public health battle against Lyme disease to speak to a group of Martha’s Vineyard Hospital physicians. “I wanted to do this presentation by Skype because of all the ticks you have here,” she joked.
Dr. Zubcevik was at Martha’s Vineyard Hospital (MVH) to speak at grand rounds, a weekly meeting of clinicians, which on this day was open to the public, resulting in an overflow crowd at the Community Room just off the hospital lobby.
Over the course of the hour, she shared the most recent findings that she and her colleagues have made on the diagnosis and treatment of Lyme disease, in particular on the 10 to 15 percent of patients who suffer long-term symptoms, defined by Centers for Disease Control (CDC) as post-treatment Lyme disease syndrome (PTLDS). She discussed the protean nature of tick-borne diseases, the importance of public awareness, and the urgent need for the medical community to step up its game.
“Graduating medical students and doctors really aren’t educated about the gravity of this epidemic,” she said. “There’s a gap there that needs to be filled. We’re all responsible to educate our young doctors about what this entails.”
Dr. Zubcevic said the recent revelation that actor, singer, and songwriter Kris Kristofferson was cured of dementia once he was properly diagnosed with Lyme disease should be a lesson for medical professionals on how pervasive the disease is, and how often it is overlooked.
“Sudden-onset dementia should really be a red flag for Lyme [disease], especially in people with compromised immune systems,” she said.
“Everyone over 50 has a compromised immune system.”
Dr. Zubcevik said that doctors and parents should know that Lyme presents differently in children than it does in adults. “71 percent of the time, headache is the most common symptom in children,” she said. “Mood disturbance, fatigue, and irritability are also frequent symptoms in children. If they are acting out in school all of a sudden, get them tested.”
Dr. Zubcevik cited a particularly compelling example of undiagnosed Lyme disease where a 29-year-old male had been institutionalized four times for schizophrenia. After a series of tests, and in concert with a psychiatrist, Dr. Zubcevik began a course of daily antibiotics on him. “The first month he could remember what he had for breakfast,” she said. “The second month he could read a chapter of a book, and after six months he was back to normal. He could tolerate light and sound again, which he couldn’t before.”
Tick truths challenged
Dr. Zubcevik said recent research debunks several commonly held beliefs about the transmission and treatment of tick-borne diseases.
“The conception that the tick has to be attached for 48 hours to inject the bacteria is completely outdated,” she said. “There are studies that show that an attachment of 15 minutes can give you anaplasmosis,10 minutes for the Powassan virus, and for the different strains of Borrelia burgdorferi, we have no idea.”
Dr. Zubcevic said the notion that children, infants, or pregnant women should not be given doxycycline is also outdated. “Dermatologists have prescribed doxycycline to kids for years to treat acne; why not for such a debilitating disease?”
She also said the two-day course of doxycycline, often prescribed for people who find a tick embedded on their body, has little or no prophylactic value. “It should be 100 to 200 milligrams of doxycycline twice a day for 20 days, regardless of the time of engorgement,” she said. “It is not a two-day thing.”
The blood tests currently used to detect the presence of the Borrelia burgdorferi bacterium are the enzyme-linked immunosorbent assay (ELISA) and the Western blot test.
Dr. Zubcevik said research has shown there are 10 different strains of Lyme disease in the United States, and many of them do not test positive on the traditional Western blot or ELISA tests. In a previous email to The Times, she wrote that with current testing, 69 out of 100 patients who have Lyme disease may go untreated.
“The bull’s-eye rash only happens 20 percent of the time,” she said. “It can often look like a spider bite or a bruise. If you get a bull’s-eye it’s like winning the lottery. Borrelia miyamotoi, which we have a lot in Massachusetts, will not test positive on either test. That’s a huge problem, so the CDC is moving toward a different kind of test.”
Borrelia miyamotoi also has the potential to spread rapidly, since it’s transmitted directly from mother to offspring. Nymphal deer ticks need to feed on a mammal, most likely the white-footed mouse, to contract the virulent Borrelia burgdorferi bacterium.
In addition to Lyme disease, Islanders are also vulnerable to coinfections such as babesiosis, anaplasmosis, ehrlichiosis, and tularemia, which can also go undetected. “Babesiosis is a malaria-like disease that can persist for months or even years,” she said. “Patients who can’t catch their breath are a red flag for babesiosis.”
Double whammy
Dr. Zubcevik described deer tick nymphs as “the perfect vector” because of their diminutive size — the size of the “D” on a dime — and because of the analgesic in their saliva that often makes their bite almost undetectable.
The bacteria they inject are equally crafty.
“Borrelia burgdorferi is an amazing organism; I have a lot of respect for it,” she said. “It is a spirochete, meaning it can corkscrew into tissue as well as travel in the bloodstream. It can do whatever it wants. It’s twice the speed of a [white blood cell], which is our fastest cell. It’s so strong it can swim against the flow of the bloodstream.”
Dr. Zubcevik said there are videos that show a white blood cell pursuing a spirochete, which evades capture by drilling into tissue.
“It’s really easy to see why this adaptive bug can avoid the immune system,” she said.
Dr. Zubcevik said doxycycline stops the bacteria from replicating, but it doesn’t kill them. The rest is up to the body’s immune system, which is the reason some people suffer for so long.
“There’s a lot of neurotoxicity, which is why people feel so bad all over. It’s like a toxic warfare going on inside the patient’s body.”
Controversy continues
Last week, Governor Charlie Baker rejected the legislature’s controversial budget amendment that would have required insurance companies to cover the cost of long-term antibiotic treatment which chronic Lyme Disease (CLD) advocates maintain is the most effective treatment for their symptoms. The Massachusetts Infectious Disease Society, representing more than 500 infectious disease specialists, does not recognize CLD, and urged the governor to reject the amendment, asserting that long-term intravenous antibiotic therapy can be dangerous and possibly lead to “superbugs” that are immune to current treatments.
The CDC also does not recognize CLD or the use of long-term antibiotics for PTLDS. “Regardless of the cause of PTLDS, studieshave not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo,” the CDC website states. “Furthermore, long-term antibiotic treatment for Lyme disease has been associated withserious complications.”
However, the website also says, “Recent animal studies have given rise to questions that require further research.”
Dr. Zubcevik diagnoses the condition with a different name — “persistent symptoms related to Lyme disease.”
“I’m new to this field,” she said. “For me there’s no controversy. We have to innovate, we have to find solutions. [SRH] has connected with top scientists from all around the country. Studies show that after treatment in mice, dogs, and monkeys, Borrelia burgdorferi bacteria are still there. This has also been shown in human tests.”
Citing the work of Dr. Ying Zhang at Johns Hopkins Lyme Center, she said the most likely effective remedy will be a combination of several antibiotics. In a previous interview with The Times, Dr. Zhang said he has worked on an effective PTLDS treatment for six years, and that current Lyme disease treatments may not clear bacterial debris, or “persisters,” which may be one of the possible causes of PTLDS. Dr. Zhang said that his work on tuberculosis (TB) is his primary focus; however, advances in fighting TB, e.g. using new combinations of drugs already approved by the Food and Drug Administration (FDA), have yielded promising results in the fight against “persisters.”
“There’s also a need to develop a more sensitive test,” he said.
Patient advocate
Although she started out at Spaulding Rehabilitation Hospital focusing on the neuropathy of concussions, Dr. Zubcevik branched out into treating people with Lyme disease in part because both maladies can cause similar cognitive impairment. “I heard Lyme disease patients say they can’t remember what they had for breakfast, or they get lost driving home,” she said. “It sounded the same as concussion symptoms, so we started doing PET scans.”
Positron emission tomography, or PET scan, is an imaging test that uses a radioactive substance that shows brain functioning. Dr. Zubcevik said PET scan of a patient with persistent Lyme disease symptoms showed a brain colored in blue and purple hues, where a healthy brain presented with shades of yellow and green. She showed an image of the patient’s brain after six months of intravenous antibiotics, which was dominated by shades of yellow and green.
Dr. Zubcevik told the hospital gathering that many patients she sees have been suffering the physical, mental, and emotional effects of the disease for so long, they have lost the will to live. “I literally have patients who were just done,” she said. “They couldn’t go on. The first thing I do is validate their experience, and tell them, ‘I believe you.’ Sometimes they start crying because somebody finally listened. Some patients show symptoms of post-traumatic stress disorder because they’ve been ignored for so long. Marriages dissolve all the time because one spouse thinks the other is being lazy. Many chronically ill patients end up alone.”
Treatment at SRH borrows from many different disciplines. In addition to medication, it can include nutrition counseling, physical therapy, occupational therapy, speech language therapy, mental health counseling, and referrals to infectious disease and other specialists as necessary.
Dr. Zubcevik said that the program was initially funded by a donation from a patient who was treated shortly after the clinic opened. “We’re always looking for more funding,” she said.
The current wait list at Spaulding is about four months.
Prevention, prevention, prevention
“Once patients are doing better, I will call harass them on the weekend to check if they are taking the proper precautions,” Dr. Zubcevik said. “Are they using repellant? Are they doing daily checks? Are they treating their dogs? I don’t want to do another PICC line [intravenous drug access] or PET scan.”
Dr. Zubcevik also said many people need to know proper tick removal — using tweezers to grab the head of the tick, not at the body.
“Don’t don’t squeeze the belly of the tick, it will inject the bacteria into your bloodstream. Do not use oils; it can make the tick vomit the bacteria into the bloodstream. If the tick is deeply embedded, go to the doctor.”
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http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/
More information on SRH can be found at www.spauldingrehab.org/deancenter
More information on tick-borne disease prevention can be found on the Martha’s Vineyard Boards of Health Tick-Borne Disease webpage.
Numerous videos on Lyme disease prevention, including Dr. Zubcevik’s presentation, are available on the MVTV website.
- http://www.philstar.com/health-and-family/2013/04/09/928381/wash-alert-beware-toxic-detergentshttp://www.smartklean.com/html/the_truth.htmlAn excellent leaflet (“Fragrance: A Growing Health and Environmental Hazard) with a lot more information and links can be ordered through: Redemske Design, 344 Gardiner Road, Jefferson, ME 04348. Their phone number is 207-549-3531 and 207-549-5358.8. The Vegetarian Myth by Lierre Keith. http://www.lierrekeith.com/book-ex_the-vegetarian-myth.php
http://articles.mercola.com/sites/articles/archive/2013/11/04/saturated-fat-intake.aspx
8, http://www.theguardian.com/world/2000/sep/23/paulbrown
Thousands of South American indians were infected with measles, killing hundreds, in order to for US scientists to study the effects on primitive societies of natural selection, according to a book out next month….
The book accuses James Neel, the geneticist who headed a long-term project to study the Yanomami people of Venezuela in the mid-60s, of using a virulent measles vaccine to spark off an epidemic which killed hundreds and probably thousands….
Thousands of South American indians were infected with measles, killing hundreds, in order to for US scientists to study the effects on primitive societies of natural selection, according to a book out next month….
The book accuses James Neel, the geneticist who headed a long-term project to study the Yanomami people of Venezuela in the mid-60s, of using a virulent measles vaccine to spark off an epidemic which killed hundreds and probably thousands….
One of the most controversial aspects of the research which allegedly culminated in the epidemic is that it was funded by the US atomic energy commission, which was anxious to discover what might happen to communities when large numbers were wiped out by nuclear war.
While there is no “smoking gun” in the form of texts or recorded speeches by Neel explaining his conduct, Prof Turner believes the only explanation is that he was trying to test controversial eugenic theories like the Nazi scientist Josef Mengele….
Prof Turner says Neel and his group used a virulent vaccine called Edmonson B on the Yanomani, which was known to produce symptoms virtually indistinguishable from cases of measles.
“Medical experts, when informed that Neel and his group used the vaccine in question on the Yanomami, typically refuse to believe it at first, then say that it is incredible that they could have done it, and are at a loss to explain why they would have chosen such an inappropriate and dangerous vaccine,” he writes.
“There is no record that Neel sought any medical advice before applying the vaccine. He never informed the appropriate organs of the Venezuelan government that his group was planning to carry out a vaccination campaign, as he was legally required to do….
“The political implication of this fascistic eugenics is clearly that society should be reorganised into small breeding isolates in which genetically superior males could emerge into dominance, eliminating or subordinating the male losers in the competition for leadership and women, and amassing harems of brood females.” Prof Turner adds…
In the memo he says: “One of Tierney’s more startling revelations is that the whole Yanomami project was an outgrowth and continuation of the atomic energy commission’s secret programme of experiments on human subjects.
“Neel, the originator of the project, was part of the medical and genetic research team attached to the atomic energy commission since the days of the Manhattan Project.”
James Neel was well-known for his research into the effects of radiation on human subjects and personally headed the team that investigated the effects of the Hiroshima and Nagasaki bombs on survivors and their children.
According to Prof Turner, the same group also secretly carried out experiments on human subjects in the US. These included injecting people with radioactive plutonium without their knowledge or permission.
9. http://www.cnn.com/2004/SHOWBIZ/books/04/02/lab.257/ From CNN.com: The facility at Plum Island, now overseen by the Department of Homeland Security.
http://www.counterpunch.org/2013/10/25/the-deadly-secrets-of-plum-island/
Carroll’s “Lab 257” also documents a Nazi connection to the original establishment of a US laboratory on Plum Island. According to the book, Erich Traub, a scientist who worked for the Third Reich doing biological warfare, was the force behind its founding.
During World War II, “as lab chief of Insel Riemsa secret Nazi biological warfare laboratory on a crescent-shaped island in the Baltic Sea,Traub worked for Adolf Hitler’s second-in-charge, SS Reichsfuhrer Heinrich Himmler, on live germ trials,” states “Lab 257.
The mission was to develop biological warfare to be directed against animals in the Soviet Union. This included infecting cattle and reindeer with foot-and-mouth disease.
“Ironically, Traub spent the prewar period of his scientific career on a fellowship at the Rockefeller Institute in Princeton, New Jersey, perfecting his skills in viruses and bacteria under the tutelage of American experts before returning to Nazi Germany on the eve of war,” says “Lab 257.” While in the US in the 1930s, too, relates the book, Traub was a member of the Amerika-Deutscher Volksbund which was involved in pro-Nazi rallies held weekly in Yaphank on Long Island.
With the end of the war, Traub came back to the United States under Project Paperclip, a US program under which Nazi scientists, such as Wernher von Braun, were brought to America.
“Traub’s detailed explanation of the secret operation on Insel Riems” given to officials at Fort Detrick in Maryland, the Army’s biological warfare headquarters, and to the CIA, “laid the groundwater for Fort Detrick’s offshore germ warfare animal disease lab on Plum Island,” says “Lab 257.” “Traub was a founding father….”
The Long Island daily newspaper Newsday earlier documented this biological warfare mission of Plum Island. In a lead story on November 21, 1993, Newsday investigative reporter John McDonald wrote: “A 1950s military plan to cripple the Soviet economy by killing horses, cattle and swine called for making biological warfare weapons out of exotic animal diseases at a Plum Island laboratory, now-declassified Army records reveal.” A facsimile of one of the records, dated 1951, covered the front page of that issue of Newsday.
The article went on: “Documents and interviews disclose for the first time what officials have denied for years: that the mysterious and closely guarded animal lab off the East End of Long Island was originally designed to conduct top-secret research into replicating dangerous viruses that could be used to destroy enemy livestock.”
“Lab 257” has many pages about this based on documents including many that Carroll found in the National Archives.
The book also tells of why suddenly the Army transferred Plum Island to the Department of Agriculture in 1954the US military became concerned about having to feed millions of people in the Soviet Union if it destroyed their food animals.
The Joint Chiefs of Staff “found that a war with the USS.R. would best be fought with conventional and nuclear means, and biological warfare against humans not against food animals,” says “Lab 257.” “Destroying the food supply meant having to feed millions of starving Russians after winning a war”
Still, “Lab 257” questions whether there ever was a clean break.
Officials at the Plum Island Animal Disease Center have, however, insisted over the years that the center’s function is to conduct research into foreign animal diseases not found in the USespecially foot-and-mouth diseaseand the only biological warfare research done is of a “defensive” kind.
“Lab 257” also maintains that there is a link between the Plum Island center and the emergence of Lyme disease. It “suddenly surfaced” 10 miles from Plum Island “in Old Lyme, Connecticut in 1975.” Carroll cites years of experimentation with ticks on Plum Island and the possibility of an accidental or purposeful release.
“The tick is the perfect germ vector,” says “Lab 257,” “which is why it has long been fancied as a germ weapon by early biowarriors from Nazi Germany and the Empire of Japan to the Soviet Union and the United States.”
“A source who worked on Plum Island in the 1950s,” the book states, “recalls that animal handlers and a scientist released ticks outdoors on the island. ‘They called him the Nazi scientist, when they came in, in 1951 they were inoculating these ticks.”
“Lab 257” goes on: “Dr. Traub’s World War II handiwork consisted of aerial virus sprays developed on Insel Riems and tested over occupied Russia, and of field work for Heinrich Himmler in Turkey. Indeed, his colleagues conducted bug trials by dropping live beetles from planes. An outdoor tick trial would have been de riguer for Erich Traub.”
- The Reactor, May-June 1988, p. 12. From an article by James Coates in the San Francisco Examiner, 10 April 1988. “Army officials admitted in 1977 that the entire populations of San Francisco, New York, and Washington, D.C. were subjected to germ warfare tests in the 1950’s and 1960’s when aerosols of germs were released into the air.”11.
12. http://www.jneuroinflammation.com/content/8/1/90 http://www.spirochaetalalzheimersassociation.org/intro.html
http://lymedisease.org/news/hardscienceonlyme/802.html
The results of Dr. MiKlossy’s review found a statistically significant association between spirochetes and AD. Spirochetes were observed in the brain in more than 90% of AD cases. Bb was detected in the brain in 25.3% of AD cases analyzed and was 13 times more frequent in AD compared to controls. Importantly, coinfection with several spirochetes occurs in AD. – See more at: http://lymedisease.org/news/hardscienceonlyme/802.html#sthash.xbiY3fwh.dpuf
http://www.ncbi.nlm.nih.gov/pubmed/15665404
J Alzheimers Dis. 2004 Dec;6(6):639-49; discussion 673-81.
Borrelia burgdorferi persists in the brain in chronic lyme neuroborreliosis and may be associated with Alzheimer disease.
Miklossy J1, Khalili K, Gern L, Ericson RL, Darekar P, Bolle L, Hurlimann J, Paster BJ.
Author information Abstract
The cause, or causes, of the vast majority of Alzheimer’s disease cases are unknown. A number of contributing factors have been postulated, including infection. It has long been known that the spirochete Treponema pallidum, which is the infective agent for syphilis, can in its late stages cause dementia, chronic inflammation, cortical atrophy and amyloid deposition. Spirochetes of unidentified types and strains have previously been observed in the blood, CSF and brain of 14 AD patients tested and absent in 13 controls. In three of these AD cases spirochetes were grown in a medium selective for Borrelia burgdorferi. In the present study, the phylogenetic analysis of these spirochetes was made. Positive identification of the agent as Borrelia burgdorferi sensu stricto was based on genetic and molecular analyses. Borrelia antigens and genes were co-localized with beta-amyloid deposits in these AD cases. The data indicate that Borrelia burgdorferi may persist in the brain and be associated with amyloid plaques in AD. They suggest that these spirochetes, perhaps in an analogous fashion to Treponema pallidum, may contribute to dementia, cortical atrophy and amyloid deposition. Further in vitro and in vivo studies may bring more insight into the potential role of spirochetes in AD.
http://blog.lef.org/2013/12/is-alzheimers-caused-by-infection.html
Amyloid-beta Protein has Antibacterial Properties
Scientists have discovered that amyloid-beta protein has anti-bacterial properties, indicating that its production may be an adaptive response to infectious organisms, like invading spirochetes.3,4
The whole process may work something like this:
- Damaged brain cells produce amyloid-beta protein as an adaptive response to the infection.
- Amyloid-beta deposits grow and begin to affect brain cell connections and communication highways.
- With damaged connections and communication highways, dementia symptoms begin and gradually worsen.
- Spirochetes invade and infect the brain.
- The brain’s normal defenses become dysfunctional as the macrophages (microglia) become trapped and then attacked within the core of the spirochete plaque.
- With immune dysfunction setting in, the spirochete infection intensifies involving more and more brain cells.
http://www.spirochaetalalzheimersassociation.org/viduos.html
13. http:// www.researchgate.net/publication/8067017_Borrelia_burgdorferi_persists_in_thbrain
_in_chronic_lyme_neuroborreliosis_and_may_be_associated_with_Alzheimer_disease
14. http://www.aidsorigins.com/origins-aids-pandemic
Ed Hooper: Since the publication of the revised paperback version of The River in 2000, I have continued my research and, as I have long been intimating on this web-site, I can now demonstrate (a) that the experimental OPV made in Stanleyville, Belgian Congo in the late 1950s was indeed prepared in the cells of common chimpanzees of the Pan troglodytes species, and (b) that the chimps involved in these experimental procedures included many chimpanzees from the Pan troglodytes troglodytes subspecies, including those that come from the very area of west central Africa which members of the bushmeat group insist is the source of pandemic AIDS. – See more at: http://www.aidsorigins.com/more-supportive-opvaids-bushmeat-hypothesis-revised-response-recent-faria-paper-science#sthash.GvBYMycx.dpuf
The former finding is hugely important, proving that the central tenet of the hypothesis proposed in The River was correct. The vaccine-makers continue to insist that they never used chimpanzee cells for the vaccine, but I and others have proved otherwise. (Some of the evidence for this was broadcast in the prize-winning 2003 documentary, “The Origins of AIDS”, but there is considerably more evidence that has not been published to date.) This confirms that the word of the vaccine-makers cannot be relied upon for any of the history relating to these trials. – See more at: http://www.aidsorigins.com/more-supportive-opvaids-bushmeat-hypothesis-revised-response-recent-faria-paper-science#sthash.GvBYMycx.dpuf
By contrast, the oral polio vaccine (OPV) theory proposes that an experimental OPV that had been locally prepared in chimpanzee cells and administered by mouth, or “fed”, to nearly one million Africans in vaccine trials staged in the then Belgian-ruled territories of the Belgian Congo and Ruanda-Urundi between 1957 and 1960, represents the origin of the AIDS pandemic. It provides a historically-supported background: that between 1956 and 1959 over 500 common chimpanzees (Pan troglodytes schweinfurthii and Pan troglodytes troglodytes) and bonobos or pygmy chimpanzees (Pan paniscus) were housed together at Lindi Camp (near Stanleyville in the Belgian Congo, now Kisangani in the Democratic Republic of Congo, or DRC). It proposes that in the Laboratoire Medical de Stanleyville (LMS) the kidney cells and sera of these different chimpanzee species and subspecies were used to prepare batches of CHAT vaccine, but that the fact that the vaccine was locally prepared was concealed by the scientists involved, and has been covered up ever since. (In the 1950s, in most countries around the world the kidney cells of Asian macaques were used for polio vaccine preparation. The use of chimpanzee cells and sera for vaccine preparation was a unique development, but it did not conflict with the 1950s recommendations of the WHO, which were that any suitable primate species could be used to produce polio vaccines.) Of particular importance is the fact that the different species and subspecies of chimpanzee were placed two to a cage at Lindi Camp, to encourage the more nervous pygmy chimps to learn to eat like the common chimps, and that there was a play-cage where up to 10 chimps at a time were placed. Thus there was every opportunity for the onward transmission of viruses like SIVs, through fighting, scratching, the licking of wounds, or coprophagia, the eating of faeces. One of the major vaccination campaigns with the experimental OPV (a version of CHAT vaccine, developed by Hilary Koprowski), was staged in the Belgian Congo capital of Leopoldville in 1958-60, and involved all the city’s children aged up to five years.
However, there is evidence that at least some African adults were also vaccinated in the capital, just as some 170,000 African adults were vaccinated elsewhere in the Belgian Congo and Ruanda-Urundi. Nearly forty years passed before it was confirmed by genetic sequencing that the first two cases of HIV-1 infection found in the world had occurred in the Belgian Congo – in fact both isolates came from Leopoldville, in 1959 and 1960. [To give some perspective, these two isolates are sixteen and seventeen years earlier than the next earliest isolate of HIV-1(M), which also came from the DRC, and roughly two decades earlier than any HIV-1 isolate from outside the DRC.] The correlation between the feedings of experimental CHAT vaccine in Africa and the first outbreaks of HIV infection and AIDS in the world (which occurred in the same towns and villages a few years later) is “highly significant” in statistical terms. The OPV theory ascribes the minor outbreaks of AIDS caused by other variants of HIV-1 (Group O, Group N and the more controversial “Group P”) to other polio vaccines (both oral and injected) that were prepared in the cells of chimpanzees and administered in French Equatorial Africa (including Congo Brazzaville and Gabon) in the same late fifties period. It ascribes the outbreaks of AIDS from HIV-2 (of which it maintains that only two were epidemic outbreaks) to other polio vaccines (both oral and injected) that were prepared in the cells of sooty mangabeys (or other monkeys that had been caged with sooty mangabeys) and administered in French West Africa in 1956-60. All the other HIV-2 groups that are claimed by the bushmeat theorists have infected just a single person, and some OPV theory supporters argue that dead-end, non-transmissible infections such as these are the natural fate of SIVs that infect human beings via the bushmeat route: that unless they are introduced in an artificial manner (as via a vaccine), they simply die out.
The above synopsis includes the detail that the use of chimpanzees to make these experimental polio vaccines was kept secret. The OPV theory proposes that the main reason for such secrecy back in the 1950s was that the killing of hundreds of the closest relatives to man (chimpanzees) to produce human vaccines was even then highly controversial, especially when it was being done in a country (the Belgian Congo) where the Belgian royal family had pioneered the conservation and protection of wild animals. Clearly the use of chimpanzee cells involved great potential risks (that humans might acquire a latent virus from their closest primate cousins) and great potential benefits (if the method produced an effective vaccine, then this technique might end up making the vaccine developers a great deal of money). The reason for the ongoing secrecy today is almost certainly the concern in “high places” that if the OPV theory should ever come to be proved, it would fundamentally shake public confidence in the integrity and reliability of the medical establishment, possibly leading to class action law-suits involving billions of dollars. It would also very likely undermine the future use of developing countries as a testing site for experimental vaccines.
– See more at: http://www.aidsorigins.com/origins-aids-pandemic#sthash.5DiB5eQs.dpu
And then the polio vaccine the CDC admits causes cancer:
http://www.eastbaymeditation.org/accessibility/fragrancefree.html
The Wall of Personal Testimony
Personal stories about life with chemical illness.
http://www.herc.org/wall/
www.getipm.com/personal/mcs-campbell.htm
http://mcs-america.org/fragrancefacts.pdf
http://www.getawhiffofthis.com/
MCS: The New Homeless « THE CHEMICAL EDGE
- Toxins in woodsmoke:www.takebacktheair.com
Part Two
WORKER, HEAL YOURSELF
Linda Strega
The privileged classes have flooded the media for decades with advice on how to be healthy and how to get well if you’re sick. A common message is “You create your own reality” and so your illness is your own fault. Or maybe you’re not sick at all — you only think you are, or you’re faking — especially if you have an illness that no one is able to diagnose or cure. These messages permeate US culture and health care, and they are deadly to oppressed people.
When we’re sick, especially if we have an undiagnosed illness, we go to doctors and “alternative healers” who take our money to tell us that we aren’t really sick, or that we’re making ourselves sick by wrong thinking, or that we just aren’t trying hard enough. (That is, if we even have any money to see them with.) Our money goes to pay for their new cars, houses, health club dues, gourmet food, and world travel, while we go home on the bus or in our old broken down cars to figure out how to make do with $200 or $300 less that month because we had to pay the “healer.” Wait! Who did they say was creating this reality?
We still have the old problems of doctors who prescribe harmful drugs and do unnecessary or botched surgery, but those of us who know to be very careful about choosing and trusting medical doctors sometimes, in desperation, place hope in alternative health care providers who harm us in other ways. Some are excellent healers, competent and caring. But many alternative healers have their own ways of avoiding difficult diagnoses or illnesses which don’t respond to their treatments — they blame the sick person for negative thinking or not trying hard enough, or they recommend psychotherapy.
Instead of openly calling their patient a hypochondriac, neurotic, or hysterical, as doctors often do, they dress up their accusations in pseudo-psychological “psychic” terms. “You need to examine what benefits you’re getting from this illness, and why you don’t want to heal,” “The words you use are making you sick,” “You must have a spiritual problem,” or “You’re sick because you’re angry.” Many alternative healers, including Lesbian ones, subject their clients to Lesbian-hating, fat oppression, racism, and ageism as well as this routine classism and ableism, just as many M.D.’s do.
What the media and medics say wouldn’t damage us nearly as much if other Lesbians weren’t believing them and telling us the same mind-fucks. I hope this article will be useful to Lesbians and other women who, like me, are chronically ill and unable to work steadily at full-time jobs, or unable to work at all. It’s about struggling with the combined effects of illness and low income, plus ableism and work ethic guilt coming at us from able-bodied people, including other Lesbians. I’m writing to share support with others in my situation, not to convince skeptical readers. I’m not writing for anyone who believes that “we create our own reality,” or who believes that not being in the het work world or not being a professional (lawyer, doctor, professor, corporate manager, etc.) is a sign of personal failure. Anything read through the filter of those ideas will be distorted and used against us low-income, non-professional Lesbians with chronic illness.
I have what has been called Chronic Fatigue Immune Dysfunction (CFIDS), also called Myalgic Encephalomyelitis (ME) outside the U.S. It is one of the mystery illnesses which affect millions of people, most of them female. The causes are said to be unknown and the illness has been debated among medical scientists, denied by many doctors, and ridiculed in the media. Some people’s symptoms have improved, but so far no one has reported complete recovery. Symptoms resemble those of mild to severe flu: chronic intermittent fever, aching body, constant debilitating fatigue, difficulty concentrating, joint pains, headaches, sore throat, and swollen glands. Some people have only some of these symptoms, while others have these and more. People with other chronic illnesses and with both visible and invisible disabilities also face denial and blaming.
The Rich Visualize — We Do the Work
Healthy Lesbians, like other people, are so scared of illness and the isolation, suffering, stigma, and poverty that usually go with it, that most would rather believe we aren’t really sick, or that we make ourselves sick, or allow ourselves to stay sick, or just aren’t doing the right things to make ourselves well—anything to convince themselves that it couldn’t happen to them. They don’t care about the harm their attitude does to us, or that they are adding to the very stigma and isolation they fear for themselves.
People who believe that we create our own reality believe this not only about health, but about every other aspect of life. To put this madness into some perspective, consider the following: A downwardly mobile daughter of rich parents told me that visualizing what you want works, really works. She knew, because after visualizing a trip to China for several weeks, she got a phone call from her extremely rich grandmother, inviting her to go to China with her. Amazing, isn’t it? These are indeed useful techniques for the privileged. If you’re the beloved daughter of a rich family and you want something expensive, by all means visualize, let them know what you want, and get ready for a good time. But for the rest of us, face it, this is not the path to fulfillment.
Affirmations and visualizations do work, as a way of focusing energy, making plans, and building confidence. They have to be acted on, supported with material means, and done in a social context. Oppressed people have been using them for centuries, which is why revolutionary activity continues everywhere. Affirmations and visualizations were the first steps in creating labor unions, and all liberation movements, including radical Lesbian movements and Dyke Separatism. We just don’t go around blathering about it in trendy jargon.
Individual solutions only work for those with privilege, because privilege buys them protection, comfort, and pleasure (at least temporarily). It also buys them the illusion that, “We create the world with our beliefs.” That’s precisely what ruling class patriarchy would like us to believe: that poor people create poverty and illness, racially oppressed people create racism and their own genocide, females of all ages invite rape, little girls cause their male relatives to assault them, Lesbians create Lesbian-hating. It follows then that oppressed people deserve no better than what we get. As long as the victim is blamed, the perpetrators of violence and injustice are safe to continue their destruction. And those with the unearned comforts of privilege get to feel superior, believing that their well-being is a sign of their virtue or supposed “hard work,” thanks to the propaganda of dominant US culture. Even less privileged people who happen to be healthy at present can feel superior to sick people who can’t work at all, because of the merciless US work ethic.
Unless they are unusually aware and conscientious, the heirs of privilege lull themselves with affirmations. They imagine that the universe needs only to be furnished with a mental pattern of their desires and, out of thin air, all goodies will shower down upon them. They don’t want to notice that as they dream, millions of working people all over the world are wearing out their lives manufacturing the goodies, providing the services, cleaning up after, and often doing without basic necessities of life. Millions of people are just scraping by with or without jobs, millions are dying of hunger and illness, not because of natural disasters, not because they think negative thoughts, but because of male capitalist rule.
What do we visualize for ourselves? Freedom from oppression, and we already know that won’t come out of thin air, any more than anything else in our lives does.
Sometimes oppressed people believe the propaganda of the rich and powerful, because we’ve internalized shame and self-hatred, or because it’s so painful to face the enormity of the injustice that’s done to us, or because it gives us illusory hope. Sometimes it seems easier to blame ourselves than to put the blame where it belongs and fight back. It’s also very difficult to accept that there are some things we don’t have total control over.
You Must Be Doing Something Wrong
When people believe that we create our own reality, they say many cruel things. One Lesbian told me, “Some people get addicted to their illness.” When you’ve been sick for a long time and have had to reshape your life because of illness, a statement like that really hurts. Being sick when you’re poor or working class doesn’t relieve you of work, responsibilities, or anxieties. It adds to them. What’s the reward she imagined we get? I have no doubt whatsoever that I’d rather be well, and in fact I follow disciplined health practices that would overwhelm most healthy people, to stay functioning and to try to regain my health.
Most healthy Lesbians overlook the enormous efforts I make to improve my health and to simply function at all. Through the years, I’ve seen more than enough doctors, acupuncturists, homeopaths, and other “natural healers.” I’ve read countless books about nutrition, herbs, and homeopathy, all of which I use regularly. I do Yoga or Qi Gong every day and take walks when I’m able, and I’m more careful than I ever dreamed possible about eating the most nutritious foods. I use herbs and supplements. I try to get adequate rest and sleep while dealing with chronic insomnia. I meditate and, yes, I visualize. I stay in touch with my feelings and find positive ways to express them; I pay attention to messages from my body; I’ve never smoked, and don’t use addictive substances, not even coffee, tea or sugar. I guard against exposure to toxic chemicals the best I can.
All these efforts keep me functioning. But I’m still sick. Sometimes I get sicker because of toxic exposure or other stresses that are beyond my control. Because I haven’t recovered, some Lesbians assume I’m not doing much to help myself. At this point, I’ve taken so much responsibility for my own health that it’s too easy to blame myself for “failing.” I don’t need other people pushing me to blame myself. Even if I wasn’t doing so much to heal myself, no one should blame anyone for being sick or for not getting well. That adds to our stress, and stress makes any illness worse.
“You Don’t Look Sick”
Other Lesbians’ not believing that I’m really ill has been a major problem. Friends and other ill Lesbians recognize the ups and downs of my physical condition even when I don’t say anything about it. But there are certain Lesbians who insist that I don’t look sick, that I must just be depressed, that I’d feel fine if I went out more. Logic doesn’t work with those who are determined to disbelieve. I’ve been told, “I’d be sick too if I sat home all day.” I don’t “sit home all day,” although illness prevents me from being as active as I’d like. But when I am seen at an event, that is used as “proof” that I’m not really sick.
It’s a relief when Lesbians take my word for it that I’m sick, as my closest friends have. I know someone cares when she doesn’t expect me to push myself to the point of collapse to keep up with her. I understand being confused at first, when a healthy Lesbian sees me socializing, or at a meeting, or grocery shopping, and thinks I can’t really be very sick. I don’t mind explaining about how seldom I can do those things, or about the hours of rest and sleep that precede and follow those activities, how I still always feel sick even when I’m apparently functioning for a short while as a healthy person, and how I pay with increased illness for exertions she can take for granted. But I don’t want to explain it to the same person over and over, and still have her doubt my honesty or sanity.
Some Lesbians tell me, “I don’t feel good either, but I just ignore it,” or, “Well, nobody really feels good, you know. Maybe you’re just hypersensitive about it.” Each of their days is filled with more activities than I could manage in a week, so I know that even if their health isn’t ideal, they’re not sick in the way I am. In fact, when these same Lesbians get temporarily sick with similar symptoms as mine (like when they have the flu), they’re completely incapacitated. I get sicker very fast when I have to push my activity level beyond a certain point, and I know of Lesbians with CFIDS/ME who have ended up in the hospital because they were forced to continue working beyond their capacity. We shouldn’t have to be that severely ill before we’re believed. Even then, a lot of people seem to think the illness is psychologically caused. It’s cruel.
Some Lesbians believe the propaganda that we’re just depressed. Depression is indeed listed as one of the symptoms of CFIDS/ME. It’s a challenge to avoid depression when we’re treated the way we are and suffer so many losses—jobs, a livable income, homes, friends, social life, social acceptability, independence, energy, favorite activities–but the illness and its symptoms are not caused by depression. I don’t even think that having CFIDS/ME in itself necessarily leads to depression. I know healthy Lesbians who are far more often depressed or otherwise unhappy than I am.
The fact that a number of people with this illness have killed themselves does not mean CFIDS/ME is actually just depression. Everyone with CFIDS/ME who’s told me she considered suicide said she felt despair because of the way she was disbelieved, scorned, and denied physical and financial support.
“You don’t look sick.” I’ve sensed different motives for people saying that. I think some Lesbians are trying to reassure us, hoping we’re not as sick as we feel. More often it means they don’t believe us. It’s not helpful, because facing the realities of being sick is frightening, and we often have to struggle against our own tendencies to deny that we’re sick. We don’t need other Lesbians to push us to deny being sick, because when we do, we end up trying to be as active as a healthy person and neglecting our healing practices, and that makes us dangerously sicker. It probably is confusing for healthy Lesbians who haven’t been around someone who’s chronically ill. Illness doesn’t always show. For instance, many people with cancer don’t “look sick.” Should we shut up until we collapse?
When you’re chronically ill, you learn to hide it as best you can. It’s a way of trying to be more acceptable and also a way to try and forget for a little while. (Most of us get a lot of practice trying to pass as healthy when we have to continue working for years while seriously ill.) Lesbians should also be aware that some other disabilities don’t show either, and that denial and passing as able bodied can also be difficult issues for some disabled Lesbians who aren’t ill. And, of course, it’s possible to have both visible and invisible disabilities; for instance, a Lesbian with limited mobility might also have CFIDS/ME and Chemical Injury.
The Boss Says “Get Back To Work!”
Then there are the Lesbians who ask, “Have you tried working it off?” That’s the kind of question that leaves me temporarily speechless. What choice do we have but to keep on working until we absolutely can’t, and then just keeping our lives together becomes a full-time job. The “working it off” question came up so often, and being unable to work is such a painful issue for me, it forced me to think about it more deeply.
I am haunted by the image of the malingerer, the person who’s sick or pretends to be sick or just won’t get well simply because they’re “lazy” and don’t want to work. Or rather, other people haunt me with that image which they project onto me. Where does it come from, I’ve wondered? Can’t they see how hard I’ve always pushed myself, how much I do in spite of being sick? But the malingerer is an imperialist capitalist lie made up by bosses and rulers and drummed into us from nursery school. The “malingerer” is the worker who won’t work, the soldier who won’t fight, because they’re supposedly pretending to be sick.
The indoctrination starts when the school child doesn’t want to go to school, because she’s sick. Ah, but “Is she really sick?” they ask. She must be taught that unless she’s at death’s door, and possibly even then, she must go to school, just as later in life she must go to work. I grew up in a factory town, and these teachings weren’t even disguised. “You’ll never hold down a job if you stay home every time you feel sick,” is what we were told. Schools are the places to train future workers, soldiers, and bosses, and all learn about the evil “malingerer”. We don’t learn that school, jobs, and being in the military can in themselves make us sick. In fact, we’re taught that they are good for us, and that only a bad, lazy person would try to avoid them. (Obviously, being in the military can also make you dead, or disabled from physical injury. But lifelong illness, such as Gulf War Syndrome, is a common result and seldom acknowledged as legitimate by authorities.) Yes, it’s sometimes important to be able to keep going no matter what, but no one should be forced to live that way all the time for someone else’s profit and power. And if the ruling class thinks these are such fine values, why don’t they live by them?
Nowadays I give myself advice that only another poor or working-class renegade could give me. A major breakthrough for me was realizing that my training and identity as “worker” was mostly an identity as “worker for somebody else.” I developed many strengths to cope with the demands and stresses of being a worker for others, but I also acquired deep-seated habits that drained my energy and self-esteem. Those habits are constantly reinforced and encouraged by the het world and also by many Lesbians, especially class-privileged and upwardly-mobile Lesbians. It has taken me a long time to realize that many middle-class and upper-class Lesbians have internalized the identity of “boss,” because I didn’t want to believe it. Now I know I have to believe it, for my own protection.
I was such a good, well-trained worker that even when I was alone, doing my own work, I felt compelled to do everything quickly and efficiently, ignoring my body’s pleas to stop for rest, food, and water — just like at a job. It wasn’t my natural pace at all. I now try to slow myself down and care for my body, so that when I have a “good” day I don’t drive myself non-stop and then drop into bed sicker than ever.
I was raised to believe that everyone else’s time was more valuable than mine. Being sick reinforced this belief, which was unconscious by then. Even now that I know better, it’s hard not to defer to Lesbians who have full-time jobs. My impulse is to consider their schedules, needs, and desires more important than mine. As a friend, I gladly make allowances for their limited amount of free time, and I’m genuinely sympathetic about the stresses and fatigue caused by their jobs. What’s been painful to recognize is that some well Lesbians don’t reciprocate by making allowances for my limited stamina and for the stresses and fatigue caused by illness.
Some act as if I’m on a long vacation, resent my ability to sleep late when I need to, and expect me to do as much as healthy Lesbians at social and political events. They don’t think about what it’s like to always feel as if you have the flu, to have an illness that forces you to sleep 10 to 12 hours a night or keeps you awake with insomnia night after night. They don’t think about what it’s like not having the money, acceptability, and (for some) health insurance benefits of a regular job, or how it feels to work organizing an event and then have to skip the after-meeting party because you’re too sick. I don’t want to be scapegoated for other Lesbians’ anger at having to work for others. I don’t think they should have to work at jobs either. Patriarchy and capitalism — namely, powerful and unscrupulous men — are responsible for workers’ oppression, not sick Lesbians who are unable to work.
The most cruel things have been said to me by class-privileged or upwardly mobile Lesbians with professional or semi-professional jobs. One, who was proud of her job and liked it, told me she had “a hard time with Lesbians who don’t work.” She felt resentful of Lesbians who lived on Social Security disability benefits, unless they were visibly disabled. She thought of them when she saw how high her Social Security taxes were, and it made her angry. She didn’t say a word about how much of her income taxes go to the enormous US military budget. Why does she choose to think of Lesbians with hidden disabilities or illness as thieves of her money? And why does she not acknowledge that her income after taxes is enough to live luxuriously, unlike anyone on disability income?
Being face-to-face with thrift store clothed, ill Lesbians who still have revolutionary ideals apparently triggers deep reactionary reflexes. Something odd is going on when, during one conversation, you feel yourself shrinking, your clothes suddenly feel old and shabby instead of just broken in and comfortable, and your ignorance about expensive electronic gadgets makes you feel inferior. Most likely the person you’re talking with is feeling and acting smug and superior. For those who invest their self-image and the major energies of their lives in the security and status of acceptable, good-paying jobs or professions, we embody some of their worst fears — being poor and unable to work, and having no job identity to prove our worth. They seem to be thinking, “I’m not like her. I’m not like her, I’m not like her.” Meaning, “That can never happen to me.” In fact, the same Lesbian who resented sick Lesbians on disability income used to say, “That’s not going to happen to me — I have health insurance.”
Actually, given the same circumstances of class oppression and/or other oppressions, and illness, it would happen to her too. It could still happen to her. Anyone can get chronically ill, and in the US, if you’re not rich, poverty soon follows. It doesn’t feel good being less important to someone than their fears, their need to feel superior and safe. But the real struggle is to avoid internalizing their destructive attitudes.
As for jobs, I think Lesbians should have as much money, status, and power as conscience and circumstances allow. Professions and certain jobs buy Lesbians some of those things and give them the opportunity to help other Lesbians with less privileges. But we’re not failures in life, nor burdens on society, for not having a job or profession –nor is any Lesbian, able-bodied or not, who gives up the security of steady jobs for the risky but relatively independent life of part time low-paid self employment. That takes courage and shows sound values. Like many of us knew decades ago, working at jobs and professions that keep the capitalist het world prosperous and functioning is a necessary evil at best. Lesbians without jobs don’t get the money or acceptability of being an employed worker; however, we can rejoice in the fact that we’re not contributing our labor, attention, and good ideas to any patriarchal institutions.
As a Lesbian Separatist who’s worked at jobs while relatively healthy and also while increasingly sick, and who at present cannot work, my experiences have given me insights I would otherwise have missed. I value the insights of Lesbians who experience life from outside acceptable boundaries. We’re all outsiders to the degree that we identify openly as Lesbians. In addition, those of us who cannot or will not buy pieces of acceptability from the het world have a chance to sharpen our perceptions. It’s either sharpen them or be overwhelmed by negative propaganda. That gives us a lot to share with each other and with any other Lesbians who want to know what we have learned.
Working For Ourselves
I have dear Separatist friends of every class who have acceptable jobs yet still value my life and work and don’t retreat into acting superior. So I know it’s possible. My friends have the courage to face their own vulnerability, they love and empathize with other Lesbians, and are committed to bridging differences among Lesbians. Lesbians I meet who don’t have those qualities tend to drift, or hurry, into more privileged lives, a sad and unnecessary loss all around. Ableist attitudes serve patriarchy and capitalism, not us. We didn’t invent them. We learned them, and we can unlearn them.
In the early years of my illness, I still hoped to get well. At the same time, I had to be prepared for the possibility that this could be a lifelong illness and that it had caused permanent damage to my nervous system and/or internal organs. This isn’t negative thinking or “making it happen.” The material world is real. If a truck runs over us, we get broken bones. When toxic chemicals and radioactive pollutants assault our bodies our bodies are injured. And if we’re under stress because of oppression, and experiencing environmental racism and classism, unsafe homes and neighborhoods, lack of transportation, lack of jobs or low paid and unsafe jobs, overwork, homelessness (even while working), lack of access to nutritious food or decent health care, we’re more likely to get sick and stay sick from toxins and harmful microbes.
It’s especially cruel to blame an oppressed person for being sick. That’s blaming her for her own oppression instead of fighting to end it, and adds another load of stress onto an already overburdened body and mind. All the Lesbians I’ve known of who died young because of illness were oppressed in ways that caused their illness and prevented recovery. They loved life and fought for it, and were murdered by patriarchy.
I would never have chosen to be sick, and I would rather have the option of choosing how to get my income. I want to be given credit for using the experience well, for being more valuable to Lesbians than I am to patriarchy, and for having something important and true to say — something no man is going to pay me to say. I am now a worker for myself and for other Lesbians — a builder for a Lesbian-inspired future.
Endnotes
I am thankful to all the ill and disabled Lesbians who have shared valuable information, fought for recognition, and eased our isolation through writings, workshops, forums, and support groups.
This chapter is written completely from my own and friends’ experiences, but I hope in spite of this limitation it will be supportive to all Lesbians with disabilities or differences, healthy or ill, and to all poor and working-class Lesbians of every ethnicity and age.
My particular background is that of an Italian-descent factory workers’ daughter, trained in catholic schools during the 1940’s and 1950’s to be an office clerk. I did office work for several years after high school, then worked my way through college, did social work for two years to the point of physical collapse, and returned to office work. After becoming a Lesbian in 1972, I did part-time housecleaning and gardening until I became unable to work at all due to illness. I was sick with nausea and weakness throughout most of my school and working years. In that respect, I can honestly say I “tried to work it off” for more than 25 years.
December, 2014 Update
Now, at 73 years old, I’ve been chronically sick for over 32 years, and I’ve survived two very invasive kinds of cancer: clear cell adenocarcinoma of the uterus in 1993 and an unrelated neuro-endocrine colon cancer in 2002. As frightening and horrible an ordeal it was to have cancer, at least no one doubted that I was truly sick, and I received enormous support from Lesbian friends and community. With that loving support, surgery (no chemotherapy or radiation), much effort on my part, plus the unknown factors we call luck, I am still alive. It’s a medical mystery how I could recover from those cancers, yet not be able to recover from CFIDS/ME or Chemical Injury/EI/MCS. (I didn’t mention being “chemically sensitive” in 1990, because those symptoms were milder at that time. They became worse as time went on.)
Meanwhile, not only are cancer rates higher than ever because of increasing pollution by toxic chemicals, heavy metals, radioactivity (including medical treatments and over-use in medical tests), and wireless technology, but more and more people are chronically ill, often from childhood on. The spread of Lyme disease, often undiagnosed, is also adding to the numbers of chronically ill people. Thanks to the internet, there is some information and support online for those who can afford internet access and are not too electrically sensitive to use it. But the problems of disbelief, social isolation, poverty, poor health care, and lack of support I wrote about in 1990 still exist. For many disabled people, conditions have become even worse.
The following is an excerpt from an article I wrote called “Lives Worth Fighting For,” published in Rain and Thunder in their Spring 2011 issue. The article protests government cuts to in-home care for disabled people. These cuts force many into corporate-run profit driven nursing homes, even though it costs much less to pay attendants to provide better care in people’s own homes. I am adding this excerpt here because it names root causes of the ableist attitudes I wrote about 25 years ago in Dykes-Loving-Dykes.
Who Is Really a Drain on Society?
Everyone is dependent on other people, but privileged people are dependent way beyond their share. The ones with the most power, like the global corporate tyrants, are completely dependent on exploiting those of us who are poor and working class, female, racially oppressed, and/or undocumented. They hide this by reversing reality, scapegoating us by saying we are drains on society, accusing us of being lazy, greedy, untrustworthy and criminal. They also scapegoat those of us who are disabled, defining us as useless, miserable and not fit to live. They portray all of us as dehumanized things to be used and discarded.
We know that the global tyrants who run powerful corporations and governments do not expect to justify their existence or to worry that the cost of supporting their lives is a burden on society, no matter how much suffering and death they and their collaborators inflict on the rest of us and on the entire planet, and no matter how much they waste the money they steal. And they obviously do not worry about whether they contribute anything to other people’s well being.
By contrast to the global tyrants, all of the disabled Lesbians and women I’ve met contribute a lot to their communities and to the world. They are community organizers, friends, activists, writers, poets, educators and counselors, most often unpaid. Many are caregivers to lovers and friends who are more disabled than themselves. Even if someone cannot do any of these things, we still have the right to live. No one has the right to decide what the value of any disabled person’s life is, other than she herself. And I don’t know of anyone receiving In Home Support Services or other social services who instigates war, tortures people, assassinates democratically elected leaders, runs an industrial prison complex, disenfranchises voters, destroys labor unions, or creates massive environmental destruction and poisons people all over the world.
Our lives are precious. We are not here to be exploited, scapegoated or condemned to die. We are here to experience life, to love, to explore our potentials, to adventure outward and inward, to pursue happiness, and to meet the challenges of life that all people face, whether we are able bodied at the moment or whether we are disabled. Our lives are precious, and they are worth fighting for.
Bev Jo -- Radical Lesbian Feminist writing 
So many things and aspects to talk about… I’ll start with saying how
impressed I am by your and Linda’s resilience and how brave you are to
make your own lives examples for the discussion about health and healthcare.
Health and healthcare are political topics, something that many
feminists tend to forget or limit to women-specific (read:
het-women-specific) things like birth control, abortion rights and maybe
breast cancer (″Save the tatas!”) or HPV. But these things are part of a
bigger picture: patriarchy draining women in a complex way of real
endangerment and sick-making.
I’m also glad you include how alternative ‘healers’ contribute to the
sick-making of women and enforce patriarchy on a ‘spiritual’ level. Many
people I know fall into the trap of the ‘my enemy’s enemy must be my
friend’ and are completely uncritical about each and every alternative
healer/cure, not matter how ineffective, cruel, gaslighting or downright
idiotic it may be. They are also the ones who tend to drift into the
idea that people get what they deserve, without even realising how
(proto-)fascist that is. There is a big right-wing/nazi/fascist
undercurrent in the new-agey scene here in Europe. Big overlaps between
new age communities and downright politically neo-nazis.
This also reminds me of the terror against fat people that is put up
today. As soon as women are terrified to be fat, ill or occupied with
self-censoring their ‘negative thinking’, they will not use their energy
for anything radical anymore.
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Thank you so much! You are so right!
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Read your post to GenderTrender – Maybe censored on GenderTrender
Yes, Bev Jo, I wish someone would prioritize the millions of women who are dying of breast and lung cancer. In about the same period of time that 600,000 people of all ages and genders died of AIDS in the USA many more women, two million women at least (over three times as many as all people who have died of AIDS in the USA) have died of just breast cancer alone, while even more women are dying of lung cancer. Most of those deaths were caused primarily by doctors prescribing carcinogenic birth control pills and hormone “replacement” drugs, which were the most profitable drugs in history for pharmaceutical industry and were prescribed for 35 years. Such lethal drug practices were allowed to flourish on the basis of hundreds of fraudulent “studies” paid for by you and me. No one has ever been prosecuted or even scolded for these millions of deaths. About 250,000 women are newly diagnosed with breast cancer every year. Breast cancer is only one of the diseases caused by these drugs. Lung cancer among even non-smoking women is another, while heart disease and stroke have exploded among women who used to be thought to be almost immune to these diseases caused by carcinogenic drugs that have made so many men rich. Even people who have never been prescribed these drugs are affected by their presence in the environment and water supply. As a result, according to estimates, the life expectancy of low-income white women has been eroding since the nineties (by about 7 years) with little comment or notice. With the decrease in smoking and more health consciousness the trend in life expectancy should have been the opposite. Still, these are only poor women who don’t have an obvious patriarchal identity so who cares? And still, in the face of this pandemic, I hear women talk with self-righteous pride about how they are sacrificing their time and lives to nurturing men with AIDS and trying to shame other women to do the same.
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Thank you so much. I hope she lets your comment go through. I just tried to answer her attack on me, but assume it will be censored. It’s very painful. I know she had dear gay men friends. But she seems to forget the incredibly business powerhouse AIDS became, how much gay men hate Lesbians and other women, and that it IS relevant that it’s an STD and some gay men are literally trying to get it, as the gay man I know told me.
I love Gallus Mag dearly and so much support her, but this has always been an issue. Some might be she is younger and had been in a community with gay men as opposed to a Lesbian community. I saw what we once had as a women only community, and how we have nothing left, while gay men in this area are an incredibly rich and powerful group. I have never seen any of their extensive resources shared with ill or dying Lesbians.
Yes, “shame” is exactly how they try to manipulate us. As if we are criminals to say no to prioritizing men.
I just want to add that I see far more African-descent Lesbians dying young from cancer and other illnesses. I don’t want our defense of women to be a racial divide.
To share with you, this is what I just tried to post to Gallus Mag at GenderTrender:
I was not trashing anyone. No, I am not disgusting like the hateful hets who attacked gay men. I’m a Lesbian who has seen friends die with almost no support, while AIDS projects for gay men still get millions annually.
I did not mean to offend you, but this entire issue brings up what has been done to dying Lesbians versus ill or dying gay men. In the Bay Area, dying Lesbians were kicked out of the Shanti Project, which had been created for dying Lesbians and gay men. Why? At the same time, the gay men who had publicly written about not wanting “dirty” Lesbians at their events suddenly were printing ads asking us to donate blood (because, as they said, our blood was the cleanest) to men with AIDS.
I and the Lesbians I know did not see gay men dying all around us. We were not welcome to be in the many safe and beautiful spaces gay men had for themselves. They hated us. If we stepped into the Castro, which is their entire neighborhood, we were given dirty looks. (Our areas were in other people’s ghettos where we were also hated and sometimes attacked.)
Lesbians who did try to work to support gay men were called “fish” and “cunts.” Del Martin wrote about this in her article, “Goodbye to All That.”
You have a different experience, but don’t act like others of us are the right wing because we were working to help Lesbians when no one else would.
Why is it “disgusting” to dare talk about what the queer community will never allow to be said, which is that Lesbians are always expected to put everyone else first, even when our own people are dying: men, gay men, het men posing as Lesbians, bisexual women, het women, etc. all come before Lesbians? As a people and community, we are always subsumed and erased on behalf of everyone else. Why is it wrong to say this?
I refer to AIDS being an STD because it’s ignored. AIDS has been elevated to a noble illness that liberal well-meaning Lesbians think is for more important to work against than the illnesses killing Lesbians. And so, Lesbians are still expected to prioritize men with AIDS, far more than for Lesbians who are dying. Why? Because they are men. Because they count more.
In this area, where there is SO much money among gay men, where they have an entire neighborhood with countless businesses, Lesbians who are dying have nothing, while other Lesbians are lured into working for AIDS projects that are primarily for men. The amount of money made is phenomenal, compared to what Lesbians get. The AIDS Lifecycle Ride in 2013 got $14.5 million. This is while Lesbians have lost our last spaces because of money — not one bookstore, coffeehouse, bar, etc. left.
Too many Lesbians believe their current work and donations on AIDS projects are more important and real and “queer” than anything they can do for Lesbians, which leads right into prioritizing other men, like the trans cult.
Meanwhile, a gay man I know with AIDS is in despair because gay men regularly ask him to give them AIDS. This is no a rumor or lie, but the truth. He has no reason to lie. The look on his face says it all.
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From our book:
In a speech given at an Eighties San Francisco conference for Lesbians who were taking care of men with AIDS, Jackie Winnow, a Lesbian dying of metastatic cancer, said
…. there’s a few things you should know. There are around 100 women with AIDS in the Bay Area. In 1988 there were 40,000 women in San Francisco and Oakland living with cancer; at least 4,000 of the women with cancer are lesbians; 4,000 will die this year. Only 1.5 percent of the city health budget last year went to women-specific services …. There are so many women in our community with health problems, be they cancer, environmental illness, Epstein-Barr or multiple sclerosis, but they are not seen as having anything serious enough to be taken care of … and women are on the lower rungs of the financial ladder, and when they become ill the bottom falls out much quicker, because they’re closer to it …. Why aren’t we screaming that sexism kills us? …. All disease in this country is political … the money going to AIDS was taken from the cancer budget ….4
As Anna Lee, a Black US Lesbian Separatist, says in her brilliant article, For The Love Of Separatism:
Another example of the bond between white lesbians and white males is the almost wholehearted endorsement of the need to support males dying of AIDS…. many white lesbians both separatist and non-separatist claim that because black women are dying of AIDS, lesbians should be involved in that struggle. It is true that black females and males die from AIDS. It is not true that AIDS is transmitted through the air we breathe and the water we drink. It is transmitted through sexual contact with someone who has AIDS and through blood exchange with someone who has AIDS. Because of the way AIDS is transmitted, lesbians are a low risk group. In order to induce lesbians to work on AIDS, the definition of lesbianism is diluted to include women who have sexual contact with men. Who then is a heterosexual woman?…. I’m still waiting for white lesbians to question their bond with white men and what that bond means to creating a diverse lesbian community. The bond between white lesbians and men is currently a stumbling block to the creation of meaningful race and class diversity.”5
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Along with many other commenters censored, Comment censored from Gallus Mag Blog
https://gendertrender.wordpress.com/2015/11/06/drop-the-t/#comments
Yes, Bev Jo, I wish someone would prioritize the millions of women who are dying of breast and lung cancer. In about the same period of time that 600,000 people of all ages and genders died of AIDS in the USA many more women, two million women at least (over three times as many as all people who have died of AIDS in the USA) have died of just breast cancer alone, while even more women are dying of lung cancer. Most of those deaths were caused primarily by doctors prescribing carcinogenic birth control pills and hormone “replacement” drugs, which were the most profitable drugs in history for pharmaceutical industry and were prescribed for 35 years. Such lethal drug practices were allowed to flourish on the basis of hundreds of fraudulent “studies” paid for by you and me. No one has ever been prosecuted or even scolded for these millions of deaths. About 250,000 women are newly diagnosed with breast cancer every year. Breast cancer is only one of the diseases caused by these drugs. Lung cancer among even non-smoking women is another, while heart disease and stroke have exploded among women who used to be thought to be almost immune to these diseases caused by carcinogenic drugs that have made so many men rich. Even people who have never been prescribed these drugs are affected by their presence in the environment and water supply. As a result, according to estimates, the life expectancy of low-income white women has been eroding since the nineties (by about 7 years) with little comment or notice. With the decrease in smoking and more health consciousness the trend in life expectancy should have been the opposite. Still, these are only poor women who don’t have an obvious patriarchal identity so who cares? And still, in the face of this pandemic, I hear women talk with self-righteous pride about how they are sacrificing their time and lives to nurturing men with AIDS and trying to shame other women to do the same – much as they try to recruit support for transgendered cis men.
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I still don’t see your comment there. Your new version says more, so I’m including it.
It’s very upsetting you’re not allowed at GenderTrender. I was allowed to post, but would say more though I don’t dare.
What is the most upsetting is the not thinking and blaming us for not rushing out to help men we didn’t even know. If we here of another group having a health crisis, are we expected to stop helping ill and dying Lesbians and go to that group? Why the expectation of helping men we never even met because they identify as “gay” when that entire community despise us.
I remember first reading about the mystery illness in the only resource we had left about Lesbian events. We had to wade through countless male porn ads and ads for NAMBLA. Why would we think that was our community? Why?
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