Wednesday, June 6, 2012

National Council on Disability

Hi guys, Today I was asked to forward the following Letter of Testimony, that I wrote to another agent of the NCD. I hate these things, they are horribly traumatic for me to compose or review, but I get asked for them a lot. I'm putting this one here because they paint a very accurate picture of the reality which most TIs face. This is just a small part of what I've delt with in the last 8 years....

 "Dear Mr. XXXXX,

I am one of those people who suffers with chemical sensitivities due to toxic injury. I support the NEHS recommendations.

I was originally sprayed by an Ag pilot with the organophosphate, "Monitor," while surveying an alfalfa farm in Eastern Oregon. Several years later, before I'd completely recovered, a melon farming operation began renting property near or adjacent to mine. They use soil fumigants, classified as "1 Danger!" (the highest rating in the EPA) like Metam, & 1, 3 Dichloropropene, herbicides like 2,4-D, & Paraquat... and a fungicide (chlorothalonil) every week, with fertilizer, from the end of February to the end of October. Chlorothalonil kills all living cells, from fungus to mammals by up-taking glutathione. They did this for 5 years.

Because I was already chemically injured, & diagnosed with asthma & fibromyalgia, I requested the accommodation of being advised what chemicals were going to be put down, and advance, co-opertive notice. I was repeatedly told they were only using "fertilizer" & that it was perfectly safe. My condition degraded dramatically and I became severely and multiply disabled, and was told to go home and die, by my asthma/allergy doctor, March 10th, 2004, the second year of their transient melon growing operation. Among my many devastating physiologic conditions, I was extremely glutathione deficient. At that time, we didn't know why, or why I couldn't "hold on to it" when it was replenished. I continued to become exponentially more injured, as they rented the properties in my area for 5 consecutive years. It wasn't until the final year (2007) that I was able to confirm through the EPA that they were using chlorothalonil and on a weekly basis. This extremely volatile chemical uptakes All available glutathione and studies have shown it's application has adverse impact on wildlife up to 4 miles away.

During this time, and in the years following,  I was subjected to discriminatory actions by private citizens and public officials.  The farmers, and a neighbor who refused to accommodate me, who ridiculed and slandered me and deliberately applied unnecessary pesticide to "teach me a lesson", to harm and harass me, and to imprison me in my home. He even stated that that was the intent, to a law enforcement officer, who condoned his behavior. The volatility period of these chemicals is from 48 hrs to 8 days, and the one neighbor chose to use 2,4-D as his weapon of choice, specifically because it imprisoned me in my home for 8 days. He made a point of spraying 2,4-D every week. When I left my home for medical treatment, I was repeatedly, life threateningly, harmed as that neighbor deliberately/knowingly applied it the morning of my appointments, to his driveway.

Law enforcement officials refused to recognize it as a lethal weapon, in my case, even though the person admitted he was using it to retalliate and it meets the legal definition as a lethal weapon. I'd provided them a doctor's letter stating that it was life threatening and the basis of my disability. The County Sheriff was prohibited from assisting me by the District Attorney, Dean Gushwa, and the County Commissioners (all farmers, with a conflict of interest and decided prejudice.) The Department of Ag, Pesticide Division refused to make accommodation for my disability and require farmers implementing pesticide programs in my area to co-operatively notify me (or have them use least toxic, least volatile substances and to prevent pesticide drift). The Head of the Pesticide Inspection Department, Dale Mitchell, told me that "a few have to die or the good of the many" and taunted me that maybe if I died, then he MIGHT believe that chemical sensitivity was real. He deliberately "lost" my report of visible pesticide drift, for a year, then he snidely offered to send someone out to test. Chris Kirby, Mr. Mitchell's Supervisor and Katy Coba, the Head of the Oregon Dept. of Ag, sic'd the Oregon Dept of Justice on me, saying that I was a crazy person, and the Oregon DOJ, told me it was their job to protect the Dept. of Ag from people like me.

All I wanted was protection from harm on the basis of my disability, and my civil rights back. I was simply asking for cooperative notification, and reasonable care in choosing and applying pesticides... Instead,  I was imprisoned in my home, being chemically bludgeoned to the point of severe systemic collapse, including heart attacks, toxic induced intermitant porphyria, toxic encepholopathy, paralysis of the diaphragm, including suffocation, kidney and liver damage, such that I passed chunks of blood and tissue, cessation of urine, lymphodenopathy, lymphodema, blindness, loss of small and large motor skills, mental impairment, thickening of blood in my veins, severe pain... I could go on. It was and is a nightmare. I lost access to all of my own farm, and was forced out of my farming activities and my teaching job. (I had returned to teaching, after being sprayed with monitor, while surveying.)

I attempted to send a proxy to the Pesticide Analytically Response Commission (PARC) to obtain accommodations that would return my civil rights back to me. I elicited the support of the Director of Environmental Divsion, Oregon Department of Health and Human Services, Gail Shibley. She assured me it was an excellent plan, solicited all my details, and all the while she was co-chair of PARC, with Dale Mitchell. She never said a word before the meeting. Both of them refused to recognize my speaker at the meeting. Ms. Shibley later informed me that my requests interfered with her political agenda, and she would not support them or allow them to go forward.

I attempted to file for protection under ORS 124, the Elderly Persons and Persons with Disabilities Act, against the neighbor that stated he was "going to teach (me) a lesson."The District Attorneys Office would not support or protect me and the receptionist informed me that it was her job to protect the DA from people like me and proceeded to scream at me and insult me saying I was crazy, over the phone, when I called in for help. I called over 500 lawyers to get help with my case. They wouldn't take it as it would kill their political career, or they told me it would never be allowed to go to trial. Many of them said there wasn't any money in it. I'm here to tell you, there wasn't any justice either...

I represented myself at ex parté and won my temporary protective order from Judge Wallace. I was called up the next day by the court office and informed that it was rescinded, and I'd have to go before Judge Daniel Hill in 2 days. I hadn't recovered from the first round. Judge Hill was hostile, demeaning and ordered me 3 times to get a lawyer. When we finally got to the hearing, which I attended by phone. Judge Hill said that he couldn't hear me and if I couldn't make myself heard I'd be in contempt. I had to shout (with asthma and oxigen deprivation) for my whole trial. Judge Hill ruled that I wasn't disabled because I wan't receiving SSDI, even though the statute said I qualified. My doctor was present, with a 6" folder of test and documentation validating my condition. He testified on my behalf.

 I wasn't receiving SSDI because I'd surveyed for my husband without diect pay for 10 years and only recently returned to teaching... I hadn't accrued enough terms. But the statute said "receiving SSDI, OR have a physical or mental disability... So he violated the law and got away with it. He allowed opposing counsel to slander and demean me. And was himself hostile and demeaning, in violation of ORS 124.  My lawyer said nothing. Judge Hill attempted to coerce me in to moving away. My doctor testified that there was no where safer.

I'm still being harassed, chemically assaulted and stalked by the same neighbor, Albert Ontiveros, with no protection. I've ceased to file complaints because the Sheriff's department does not respond.

The Oregon Dept. of Health and the Governor's Advocate for the Disabled got a meeting together with all the department heads and decided that I wasn't disabled or entitled to receive any protections afforded to the disabled because I wan't receiving SSDI. Sound familiar? This was right beore the hearing. Looks like collusion to me. (incidentally, I'd been discriminated against by Mary Thomlinson of Voc Rehab, and filed a complaint. I was awarded disability recognition and access to Voc Rehab by CAP, the Client Advocacy Program... In the State of Oregon.)

 Oregon Advocacy for the Disabled told me, "We don't serve your kind." (Lisa Mustafa)

Because glutathione is necessary to every system in the body, I have disabilities and reactions involving every system when exposed to toxic substances. Without glutatione you have no ability to break down toxic substances. They rampage through your body causing damage to everything they come in contact with: respiratory, hepatic, renal, porphyrin, neurological, endocrine, lymphatic, mobility, visual. I am severly and multiply disabled, yet I have no protection under the law.

Wether I get accommodation depends entirely on the morals and ethics of each individual. One year I had estrogen dominance so bad from all the endocrine system disrupting chemicals that I collapsed on the floor from a ruptured ovarian cyst. I was also severely anemic due to dysmenorrhea. During my attempts to acquire an ultra sound, I requested fragrance free accommodations. The hospital's patient liaison was very accommodating. She arranged the appointment, ordering the technician to take the appropriate precautions. The technician was so incensed that she deliberately (she taunted us with it) bathed in and saturated herself with every fragranced product she owned. The Washington State Medical Quality Assurance Commission refused to reprimand her, saying she did nothing wrong...  When I was able to finish the tests, it was discovered that I had, not only the cyst, but endometriosis and a fibroid tumor, thanks to the chemicals, the farmers that used them and the public servants that denied me my 1st Ammendments Rights. None of these people have received any sensitivity training reguarding this disability. Region 10 of the ADAs Office has given me permission to quote them, "Persons with Chemical Hypersensitivity are the fastest growing segment of the disabled population." And yet, we're the least known about and the most discriminated against. There are no examples of accommodations in the ADA technical manuals, and discriminatory people I referred to the ADA said that because of that, we aren't protected under the ADA.

This year, the melon farmer is back. I've already been harmed and sickened by the Metam and 1,3 Dichloropropene he's put down. Both have a volatility period of 5 days. So I've been imprisoned, as well...

I don't go to the ER, even when I'm having heart attacks, systemic porphyria, severe lymphomatc impaction & swelling, seizures or any other medical condition... They're too toxic. I would be further harmed and receive no appropriate remediating care. I can't be  transported by EMTs for the same reason. I received derogatory comments, harassment and refusal to accommodate when I asked them to make them. When I am chemically bludgeoned and fighting to survive, it's all on me. This is a horrible emotionally debilitating isolation, on top of everything else.

I have been violated under the ADA multiple times, and no one will do anything about it. I could go on, and on, with unending examples of discrimination... Haven't I made my point?

I have lost nearly every part of my world. My job, my farming operation, access to safe medical & emergency care, to social interaction, to family events, church & public spaces. Anywhere there are chemicals, toxic substances, fragrances, ignorance, predjudice and bigotry, I can't go. That violates my civil rights. All public spaces, offices and buildings, and all medical facilities need to be non-toxic and provide safe access and treatment to the Toxically Injured. All public employees and health care workers must have sensivity training concerning people with chemical & electrical hyper-sensitivities and other Toxic Injuries. Our rights need to be restored. It is against the ADA & the Ohlmstead Act to imprison us in our homes or prohibit us from these services and activities.

There are treatments and practices that are efficacious in the care of Toxically Injured individuals.  It is further discriminatory that those things are exempt from insurance, Medicare and Medicaid reimbursement. We're forced to go without the care we need because the majority cannot afford to pay for it out of pocket, and uninformed medical practitioners refuse to recognize the benefits of these treatments and practices. That violates our civil rights! That takes away our lives, our liberty and our ability to pursue a self sustaining livelihood.

It is a well researched fact that all toxins, wether synthetic to biologic, reduce glutathione. Glutathione treatments should be recognized as standard medical practice. Glutathione should be available in all Emergency Rooms. Infrared sauna's should be designated as durable medical equipment, and mandated "paid for" by insurance companies, Medicare and Medicaid. This is an effective healing and pain management tool. One of the few we can use safely. Nutraceuticals and non-toxic special diets should also be recognized as necessary prescriptions, and completely covered. Care from alternative, and intergrative practitioners need to be 100% reimbursed, regardless of "participation" in insurance company programs. They are all we have. We can not be treated with standard, toxic medical care.

Thank you for taking the time to review this small slice of the discrimination that I've faced. If you want a more in depth view of my daily life, you can view my blog:

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