Archive for 'Social Justice'
ANTI-TOXIC MANIFESTO: We know they are lying to us
Posted on May 04, 2010 by Susie Collins in Blog, Eva Caballé, Guest Bloggers, MCS, Social Justice
Although they want to make us invisible, lock us up in an illness and throw away the key, poison us and shut our mouths, kill us and then plant fake flowers on our tombs, they will not be able to lock us up, shut us up, nor make us disappear.
By guestbloggers Clara Valverde and Eva Caballé, Spain.
WE KNOW THEY ARE LYING TO US
(ANTI-TOXIC MANIFESTO)
International Day of Fibromyalgia, ME/CFS and MCS
May 12, 2010
They are lying to us. We know they are lying.
For the politicians, we are the black sheep in their controlled herd.
For the doctors who lie to us, we are the misbehaved guinea-pigs.
For the industry that lies to us, we are the non-profitable broken machines.
For the pharmaceutical companies, we are the pebble in their shoe.
The disease mongers lie to us.
Those who talk of progress with one hand on their wallet, lie to us.
But we do not believe their toxic lies.
Although they want to make us invisible, lock us up in an illness and throw away the key, poison us and shut our mouths, kill us and then plant fake flowers on our tombs, they will not be able to lock us up, shut us up, nor make us disappear.
We are out of patience and we are not good patients. We do not justify ourselves nor do we explain ourselves.
If you suffer with Fibromyalgia, survive with ME/Chronic Fatigue Syndrome, if you are agonizing with Multiple Chemical Sensitivity, you should know that you are at war. Their lies do not scare us, they are the ammunition in this war that has merely started.
Eva Caballé
If you believe that you are healthy, choose your side: get sick with them or live with us.
Now is our moment: we name, we decide, we define.
We do not believe their toxic lies.
We know they are lying.
Clara Valverde & Eva Caballé
~~~
Click here for pdf of manifesto: Sabemos Que Mienten
Eva Caballé blogs about Multiple Chemical Sensitivity at NO FUN. English section here.
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Couple in New Zealand searches for safe, nontoxic housing
Posted on Apr 19, 2010 by Susie Collins in Blog, Disability Rights, MCS, Social Justice, Susie Collins
Desperate for a chemical-free place to call home, Kevin and Kathryn Boyes turn to a government housing agency for help and are told: “We are unable to help you.”
Kevin Boyes
This is the story of someone in New Zealand with Multiple Chemical Sensitivity who cannot find safe, nontoxic housing. After spending a winter in their van, and exhausting all other possible resources, Kevin and Kathryn Boyes turned to Housing New Zealand Corporation, a Crown agent that provides good quality, affordable rental homes for people on low incomes or with special housing needs. Evidently that does not include the needs of people who are disabled with chemical sensitivity. Here is Kevin’s email exchange with Housing NZ Corp (published with permission of Kevin Boyes, including his medical certification):
~~~
Kevin and Kathryn Boyes
To: Jan Menzies, housing manager, Housing New Zealand Corporation
From: Kevin & Kathryn Boyes
March 19, 2010
Enquiry Please Re: Possible Housing Help
Hi Jan,
Kathryn and I are still homeless and still unable to find somewhere where I can live and work without chemical exposure illness. The Westport news recently did a story on our struggle, I have attached a copy.
We have written to every DoC office in the South Island asking if they could help us. While we have had a few suggestions and plenty of sympathy, we still have not found anywhere chemically safe.
Enquiry Please: We would please like to enquire if HNZC would help us with a suitable relocatable dwelling, if we found somewhere chemically safe? (e.g. on a large organic farm or similar).
There are several relocatable dwelling options on the market at present. I list a few below:
Thanking You
Look forward to your reply
Kind Regards
Kevin and Kathryn Boyes
~~~
From: Symon Leggett
To: “Kevin & Kathryn Boyes”
March 25, 2010
Hi Kevin
I am sorry your situation has not improved…..Yes I did see the article in the Westport News and had put it on your file.
I believe HNZC have exhausted all avenues of looking at the options available to you, in order to solve your housing situation. So unfortunately I am unable to give you a positive answer to your request, at this time.
However I will forward your request onto my Manager for him to review this.
regards Jan Menzies
~~~
To: Symon Leggett, Housing Service Manager, Housing New Zealand Corporation
From: Kevin and Kathryn Boyes
March 25, 2010
Afternoon Kevin,
Regrettably I need to confirm that Jan’s email is correct.
Housing New Zealand have exhausted all possible options of assistance to help solve your unique housing situation. Unfortunately we’re unable to help you further. I wish you and Kathryn all the best.
Kind Regards,
Symon
Symon Leggett
Housing Service Manager
Housing New Zealand Corporation
~~~
To: Symon Leggett, Housing Service Manager, Housing New Zealand Corporation
From: Kevin and Kathryn Boyes, Homeless for 10 months due to illness from chemical exposure.
April 13, 2010
Attached: Newspaper article about our Homelessness – A refugee in my own town
Dear Symon,
We have received your reply, thank you for your time.
Please in case you have the opportunity in the future to discuss our homelessness due to chemical exposure illness, with those who could possibly bring about positive change, I would please like to share the following note.
Chemical induced illness is a global concern with so many chemicals being used. Today we have babies being born loaded with toxic chemicals, this to me is sadly a powerfull focus of the current chemicalisation. Please see:
Babies being poisoned in the womb
Chemical induced toxicity illness is becoming the biggest health issue of the modern world. Please see: Pesticides, how am I exposed
A very good little clip on the chemicals children are exposed to from Healthy Child healthy World called A wake up story.
Our Homelessness due to my illness from common legal chemicals: As you may be aware we are still homeless, with all our through and detailed safe-land research showing up a great culture of toxic chemical use. Please see our homeless news paper article: A refugee in my own town.
I have also attached a PDF of this for reference.
We have written to and emailed our Prime Minister, John Key about our plight, with the only response to refer use to Housing Corp, NZ.
“Housing New Zealand have exhausted all possible options of assistance to help solve your unique housing situation. Unfortunately we’re unable to help you further. I wish you and Kathryn all the best.”
Having suffered and continuing to suffer untold illness from chemical exposure, over which I have absolutely no control, I can not find a place where I will not be exposed to legal commonly used chemicals.
We feel that it is totally wrong in the begining for any goverment to allow the use of toxic chemicals which are called toxic for that is what they are to life, and then to offer no option to live a normal life, for those who can no longer tolerate all the continuing toxic chemical exposure.
Once again please, if you, or any whom you pass this plea for help letter on to, or any other whom read it, can offer any help, Kathryn and I are about to face a second winter in a van totally unsuited for living out of.
I can not use any public toilets because of the chemical air fresheners used in them, (please see: what chemicals are in air fresheners) and I have no ready access to water for washing myself or my clothes, as I can not tolerate chlorinated water at all.
I have severe multiple chemical sensitivity (MCS), and having been exposed to many chemicals, as we all are, I have lost all tolerance to toxic chemicals and am now made very ill from even very low levels of chemical exposure. Herbicide, pesticide and chemically fragranced products are the most common exposures, resulting in illness, that I am unable to avoid.
Multiple chemical sensitivity description:
Multiple Chemical Sensitivity (MCS), is an epidemic caused by toxic chemicals. A major peer-reviewed paper on multiple chemical sensitivity by Professor Martin L. Pall, published October 23, 2009 as chapter XX in “General and Applied Toxicology, 3rd Edition” (John Wiley & Sons). I have attached a copy of this detailed press release for information.
Please Please Help Us. We need a piece of land where I will not be made ill from exposure to chemicals from the surrounding properties.
Due to the fact that chemical herbicide spray drift, the residue and residue releases, from herbicide and pesticides, will travel for a long way with wind and atmospheric air currents, the buffer needed can be 1 – 3km, depending on the amount of herbicide/pesticide use that must be buffered for.
These chemical applications will all make me ill, for up to 4 months after their use.
We desperately look forward to your replies PLEASE.
Thank You again for your time,
Kindest Regards
Kevin and Kathryn Boyes – Homeless and ill in New Zealand
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KFC and Susan G. Komen launch huge pinkwashing campaign
Posted on Apr 17, 2010 by Susie Collins in Blog, Environment, Food, Social Justice, Susie Collins
Kentucky Fried Chicken and Susan G. Komen for the Cure team up for the largest pinkwashing campaign in the history of breast cancer.
This commercial introduces the “Buckets for the Cure(tm)” campaign from KFC. KFC is joining the fight against breast cancer with this national campaign aimed at educating more women about breast health, generating support for the cause and attempting to make the single largest donation in the history of Susan G. Komen for the Cure.
I was disgusted to see the KFC commercial above announcing their alliance with the Susan G. Komen Foundation to raise funds for breast cancer “education.” Regular readers of The Canary Report know that I have a pet peeve about pinkwashing. As a breast cancer survivor, I am sickened when companies who produce products containing carcinogens jump on the pink bandwagon, suckering the public into buying unsafe products through the guise of caring about our breast health.
Christina Pirello reports at The Huffington Post on Susan G. and KFC: An Unholy Alliance. Pirello says that “according to Neal Barnard, MD, president and founder of Physicians’ Committee for Responsible Medicine (http://www.pcrm.org), both the grilled and fried chicken served up in these pretty pink buckets contributes to the development of cancer, including breast and prostate cancers.”
Spend some time on the Susan G. Komen for the Cure website and you’ll see lots of resources for women to find information once diagnosed. You’ll also find sections advising women about living a healthy lifestyle by eating a healthy diet and maintaining a healthy weight. But how can they really talk about healthy eating when they partner with the very kinds of companies that destroy the health of all people, not just women? How can they accept one penny from companies like KFC whose products create the exact health problems this organization is sworn to defeat? Someone is tilting at the wrong windmill.
Further, as an animal lover and the owner of four precious hens, I hope you think twice about the source of the chicken you eat. KFC practices factory farming, a food production practice so cruel and inhumane that I am unable to even write about it or give you links to learn more. I hope you are being conscious about the sources of your food and thinking twice before eating any factory farmed animals.
Boycott this KFC-Komen campaign!
NOT!
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Health care reform at last?
Posted on Mar 25, 2010 by Susie Collins in Blog, Keith Carlson, Policy, Social Justice
While reports state that the legislation is indeed imperfect and will make as many enemies as friends, some semblance of reform is now on its way to the American people.
President Obama signs health reform into law. White House Photo, Pete Souza, 3/23/10
It appears that health care reform in all it’s tattered and tainted glory has finally passed through both the House and the Senate. While reports state that the legislation is indeed imperfect and will make as many enemies as friends, some semblance of reform is now on its way to the American people. Some behind-the-scenes tweaking will still certainly take place, but it seems that the reform train has now left the station and will eventually arrive at a health plan near (most of) you, with the majority of changes beginning in 2014.
From my personal point of view, this train has been delayed for decades, especially taking into consideration that the United States is the only industrialized nation that does not offer universal health coverage to most of its citizens, or at least guarantee access to such coverage.
According to the information gleaned from articles and online sources, I understand that some of the salient points are thus:
- Parents will be able to keep dependent adult children on their health plans through age 26, and this benefit (which will necessitate an extra fee) will be enacted almost immediately.
- Beginning in 2014, Americans with employer-based health plans who lose their jobs will be able to buy their own (hopefully affordable) insurance without being denied or charged extra due to pre-existing conditions.
- Apparently, chronically ill children will be covered almost immediately, and chronically ill adults may have access to certain pools of coverage quite soon.
- An expansion of Medicaid coverage for the poor now seems to be a certainty after 2014.
- Some tax credits for small businesses will make it easier for coverage to be offered to be employees, and this reform may also be enacted rather soon.
- Medicaid will be expanded to cover an additional 16 million poor Americans.
- Price gouging by insurance companies due to pre-existing conditions will no longer be allowed by the new regulations.
- Insurance companies will no longer be able to cancel the policies of consumers who become ill, a practice that has become all too common.
- Insurance companies will also no longer be able to place a spending cap on the amount of money they are willing to spend on a consumer in any given year (or perhaps over a lifetime).
- In six months, all new health plans will have to cover the full cost of all preventive care.
- Beginning July 1st of this year, low-income seniors on Medicare will enjoy a 50% discount on brand-name drugs.
- By 2019, it seems that more than 90% of Americans will have health care coverage of some kind.
- Most importantly, it seems that reforms of Medicare and Medicaid are in the works, and a complicated array of regulatory reforms may indeed change the face of health care in this country by cutting costs, streamlining the delivery and payment system, and reining in health care inflation.
There is no doubt that conservative pundits will do their best to cast doubt on these reforms in an attempt to turn the American people against what will most likely be billed as “socialism” and a government take-over of health care and medicine. Many will complain that the government has no place in regulating health care, even as those same complainers enjoy the vast benefits of their (government regulated) Medicare coverage. It is ironic that so many Americans forget that Medicare, a government benefit that changed the face of health care for older and disabled Americans many decades ago, is a hugely successful program of government-based health care reform.
It is disgraceful that so many millions of Americans still live without health insurance. Due to the cost of medical care, homes are foreclosed, jobs are lost, lives are destroyed, and the most basic and important health maintenance screenings (like PAP smears, prostate exams and annual physicals) are missed due to lack of insurance coverage.
With both houses of Congress passing this historic legislation, the health care reform train has indeed left the station. There’s no doubt that there will be many arguments and problems along the way, but there now exists the true probability that, within our lifetimes, all Americans will enjoy what the citizens of other industrialized nations have enjoyed for decades.
~~~
To read 10 things that every American should know about health care reform according to MoveOn.org, please click here.
~~~
This post was originally published on my blog Digital Doorway, a digital venue for creative expression, nursing adventures, reflections, thoughtful reverie, thoughtless repose, and other flotsam and jetsam.
You can also visit me at Mary and Keith’s Excellent Adventure, where my wife and I blog about living full-time in our new RV, traveling the highways and byways of America, visiting intentional communities, and bringing Laughter Yoga and the benefits of health and wellness coaching to new and old friends along the way!
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Please sign Italian petition for recognition of Multiple Chemcial Sensitivity
Posted on Mar 07, 2010 by Susie Collins in Blog, Disability Rights, MCS, Social Justice, Susie Collins
Our fellow canaries in Italy are asking for our support: Please take a minute to sign this petition for the recognition of Multiple Chemical Sensitivity in Italy.
Italian flag
There are just a couple more days left to sign in support of the Italian petition to recognize Multiple Chemical Sensitivity. In the middle of March, the Association for Chronic and/or Environmental Diseases by Intoxication (AMICA) will meet with Senators to present the petition. Please sign; last day to sign is March 10.
Click here to sign– it’s all in Italian, so once you get to that page, click on “Firma,” then fill in the fields for First Name, Last Name, Email, Telephone (not necessary), and postal code (CAP). Direct link here to sign the petition.
THE PETITION TRANSLATED INTO ENGLISH:
Petition promoted by the Association for Chronic and/or Environmental Diseases by Intoxication (AMICA) www.sensibilitachimica.it
To the Presidency of the Senate of the Italian Republic
To the President of the Chamber of Deputies
To the XII Committee of the Social Affairs at the Chamber of Deputies
To the XII Commission of the Senate Health and Hygiene
Since the Multiple Chemical Sensitivity (MCS) is a chronic disabling condition that involves multiorgan reactions to exposure to various chemicals in quantities normally tolerated by the general population and that the diagnostic criteria were established by international consensus in 1999;
Seen that from 2 to 10% of the population is hyper-sensitive to environmental chemicals and products in common use and an increasing proportion is affected by multiple substances – that is suffering multiple chemical sensitivity, or MCS – with impaired capacity for work, social life and autonomy that varies from mild to very severe depending on the stages of the disease;
Since the MCS is recognized in the United States by federal law for the Disabled American with Disabilities Act, federal agencies – such as the Environmental Protection Agency, the U.S. Housing and Urban Development, the Social Security Administration – and many local governments;
Since the MCS is recognized by Canada federal and Provincial government agencies;
Since the MCS is classified by Germany since 1998 in the International Code of Diseases by the T 78.4 in Chapter 19 (Injury, poisoning and other consequences resulting from external causes) and Section T66-T78 (Other and unspecified damage from external factors);
As the Ministry of Welfare and Labor of Germany, who had classified the MCS in the of list of motor disability (as compared to those for the inability of patients to move), has removed the description of illness as psychosomatic (of psychological origin / Psychiatry), putting an end to discrimination of this disease environment;
As the Ministry of Health, Labor and Welfare and the Ministry of Economy, Trade and Industry (Japan), which for years have recognized the sick building syndrome – similar to the MCS, said insert MCS October 2009 in the list of diseases covered by the insurance of the National Health Service;
Since in Italy there is no law that equalize the rights of the environmental patients (not only MCS, but also of Chronic Fatigue Syndrome, to Elettrosensibilità of Fibromyalgia, Sick Building Syndrome, etc..) Than those of any other form of disability in terms of job protection, the right to treatment, the right to a home “safe”, etc..;
The petitioners demand that are challenged with the highest priority of the six bills initiative of the House of Representatives (No. 1621 August 5, 2008, No. 1654 of September 18, 2008, No. 1667 of 18 September 2008, N . 2287 March 12, 2009) and Senate (NS1019 of 17 September 2008, No. 1165 of 28 October 2008) for the recognition of MCS as a social disease, using the international consensus in 1999 as a benchmark for the diagnosis, as in the world.
Thanks Rose and Francesca! Keep up the good work!
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Multiple Chemical Sensitivity associations in Spain meet with Ministry of Health officials
Posted on Feb 05, 2010 by Susie Collins in Blog, Disability Rights, Eva Caballé, Government Regulation, Guest Bloggers, MCS, Social Justice
Eva Caballé reports on the meeting between Multiple Chemical Sensitivity associations and Ministry of Health officals in Spain, Feb. 4, 2010
Translated from Spanish by Eva Caballé
On February 4th 2010 at 12:00h has been held the meeting with Ministry of Health to state the situation of Multiple Chemical Sensitivity sufferers in Spain.
Mr José Martínez Olmos, Secretary General of the Ministry of Health, Mr Alberto Infante Campos, General Director of Professional Planning, Cohesion of SNS and High Inspection and Mr Francisco Valero Bonilla have attended to the meeting representing the Ministry of Health. One person by almost each MCS association has attended to the meeting and also Jaume Cortés, lawyer of Colectivo Ronda, and Dr. Pablo Arnold, immunologist specialized in MCS.
• ACAF: Cristina Montané
• AFCISQUIM: María Roldán
• Alas de Mariposa- SQM: Tránsito Rodríguez
• ALTEA – SQM: Cristobalina Bejarano
• APQUIRA: Mª Carmen Gómez de Bonilla
• AQUA: Mario Arias
• ASQUIFYDE: Francisca Gutiérrez
• AVASFASEM-AVASQ: Francisca García
• ENA: Laura Domínguez
• MERCURIADOS: Mª Carmen Miravete
• Plataforma Estatal Contra la Contaminación Ambiental: Minerva Palomar
• PLATAFORMA PARA LA FM ,SFC, SQM, reivindicación de derechos, Asociación Nacional: Elena Navarro
A petitions document done by MCS associations under David Palma coordination has been submitted. This document has been signed by:
• ABAF: Margarita Pascual
• ACAF: Maite Ribera
• AFCISQUIM: María Roldán
• Alas de Mariposa- SQM: Irene Escudero
• ALTEA – SQM: Cristobalina Bejarano
• APQUIRA: Mª Carmen Gómez de Bonilla
• AQUA: Mario Arias
• ASQUIFYDE: Francisca Gutiérrez
• AVASFASEM-AVASQ: Francisca García
• ENA: Rosa de Gabriel
• MERCURIADOS: Servando Pérez
• Plataforma Estatal Contra la Contaminación Ambiental: Minerva Palomar
• PLATAFORMA PARA LA FM ,SFC, SQM, reivindicación de derechos, Asociación Nacional: Elena Navarro
• Eva Caballé
Also a copy of Desaparecida: Una vida rota por la Sensibilidad Química Múltiple (Missing: A life broken by Multiple Chemical Sensitivities) has been hand delivered on behalf of Eva Caballé, who couldn’t attend to the meeting, as an example of what MCS sufferers have to go through in Spain.
The meeting with Ministry of Health has meant an agreement on minimum standards by the Ministry, but a big hope for all MCS sufferers.
Representatives of Ministry of Health have committed to contact MCS associations within 2 weeks to jointly agree on experts to form a Scientific Committee to create a document of consensus on the MCS. They have stated that this is the first step to make possible the inclusion of the MCS in ICD-10, i.e. its official recognition as disease in Spain. They have demonstrated that later there would be necessary to start creating the protocols.
All people who have been part of this process are thrilled by the result of the meeting, because doors have opened us to obtain the recognition of the Multiple Chemical Sensitivity in Spain and to achieve that MCS sufferers have the same rights as the other chronically ill people.
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MCS groups in Spain to meet with Secretary of Health
Posted on Jan 26, 2010 by Susie Collins in Blog, Disability Rights, Eva Caballé, Government Regulation, MCS, Policy, Social Justice, Susie Collins
A coalition of Multiple Chemical Sensitivity Groups in Spain will meet with the Secretary General of the Ministry of Health to discuss formal recognition of MCS.
Eva Caballé
Eva Caballé at NO FUN reports that a coalition of MCS groups in Spain will meet with the Secretary of the Ministry of Health on Feb. 4 to discuss the formal recognition of Multiple Chemical Sensitivity as a physical illness. The groups also will ask that all people with MCS have the same rights as the other chronically ill people.
The meeting will be held on February 4th 2010 in the Ministry of Health. Mr José Martínez Olmos, Secretary General of the Ministry of Health and Mr Alberto Infante Campos, General Director of Professional Planning, Cohesion of SNS and High Inspection will attend to the meeting representing the Ministry of Health. Following the Ministry of Health instructions, one person by each MCS Association will attend to the meeting and a lawyer and a doctor specialized in MCS too.
David Palma is coordinating this process selflessly.
We are now working on petitions document that will be signed by all MCS associations. This document will be given to the Ministry during the meeting, along with medical information about MCS.
List of MCS associations that are part of this process:
* ACAF
* AFCISQUIM
* Alas de Mariposa
* ALTEA – SQM
* APQUIRA
* ASQUIFYDE
* AVASFASEM-AVASQ
* ENA
* MERCURIADOS
* PLATAFORMA PARA LA FM ,SFC, SQM, reivindicación de derechos, Asociación Nacional
Link to read more about Eva’s book.
Link to read about Eva’s essay in Delirio’s “Silence” issue.
Link to read about Eva’s essay in Delirio’s “Naked” issue.
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Environmental illness and disability law proposed in Italy
Posted on Dec 27, 2009 by Susie Collins in Blog, Disability Rights, Government Regulation, MCS, Policy, Social Justice, Susie Collins, Worker's Rights
Silvia Müller at the Chemical Sensitivity Network wrote to tell me there’s an Italian law proposal for environmental illnesses and disability. The proposed law includes definitions of various environmental illnesses such as Multiple Chemical Sensitivity and Electromagnetic Sensitivity, diagnosis and prevention guidelines, guidelines for health care professionals, building and planning rules, employment protections, and financial coverage.
This is really good news. We are seeing country after country enact these types of laws, most recently Germany and Japan. Getting these laws enforced is another story, but we should still celebrate this forward momentum toward global recognition of environmental illnesses, moving us closer to full rights given to those who need medical care, safe housing, financial, and other support.
MeP DOMENICO SCILIPOTI (IDV): “HOW TO HELP PEOPLE AFFECTED BY ENVIRONMENTAL DISABILITY”
PRESS RELEASE, Rome 21.dec.09
“In order to help people with Environmental Disabilities whose survival and quality of life depend not on drugs, but on avoiding certain environmental factors, today I presented a project of law about this issue”, comments On. Scilipoti. “The law is meant for environmentally triggered diseases such as Multiple Chemical Sensitivity (MCS), involving a loss of tolerance of chemicals, or Electromagnetic Hypersensitivity (EHS), forcing the affected ones to get far from electromagnetic fields emitted by mobiles, Wi-Fi, electric cables, etc. But the law is also meant for genetic, metabolic, neurological or immunological disorders such as fibromyalgia or CFS (involving chemical intolerances) or favism, which gives serious reactions to legumes. Other cases of environmental disability are seen in autism, epilepsy, migraine and lupus that involve reactions to fluorescent lighting”. “It’s important to discuss this law as soon as possible in order to give an answer to these people”, Scilipoti concludes.
Link to read entire law proposal.
Thanks, Silvia!
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Change is coming on U.S. toxic chemical policy
Posted on Dec 09, 2009 by Susie Collins in Blog, Government Regulation, Policy, Social Justice, Susie Collins
A great report today from the Huffington Post on the work currently being done in Washington DC to change toxic chemical policy.
While Afghanistan, the economy, Copenhagen and health care grabbed headlines this week, on December 2nd, Senators Frank Lautenberg and Barbara Boxer, who chairs the Senate Environment & Public Works committee, held a hearing on an issue that could significantly influence three out of four of those big ticket items. That issue is chemicals – the synthetic and industrial chemicals, largely petrochemical in origin that permeate every aspect of our lives – and the inadequacies of TSCA (Toxic Substances Control Act), the primary law aimed at protecting Americans from chemical hazards.
The report also covers introduction of the Endocrine Disruption Prevention Act of 2009 by Senator John Kerry and Representative Jim Moran. The Environmental Working Group’s study is included as reference (they are doing God’s work in my opinion). EPA Administrator Lisa Jackson has called for increased research and development of safer chemicals through green chemistry. Coinciding with the Senate hearing was a statement signed by 13 states also calling for TSCA reform.
The coming changes might not impact the lives of people with Multiple Chemical Sensitivity in real time, but the current paradigm on chemical policy, the one that got most of us sick in the first place, is about to get trounced.
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A story about discrimination and Multiple Chemical Sensitivity
Posted on Nov 03, 2009 by Susie Collins in Blog, Disability Rights, Guest Bloggers, MCS, Social Justice
I have learned not to apologize for asking for the simple right to raise my health issue when looking for safe housing.
By Guest Blogger Missy Gluckmann.
Living with Multiple Chemical Sensitivity can be a challenge, sometimes more so than others. We know that it can also be incredibly inconvenient– having to duck and weave like Muhammad Ali when you are presented with a chemical that wants to take you down. MCS can send you to bed, even to the hospital. But this past weekend, MCS hurt the most when I realized that I was being discriminated against because of it.
While in the process of selling my house, my boyfriend Tony (who is incredibly supportive and sensitive of my MCS) and I have been diligently looking for an apartment in a new community. Which community was not the issue; we found a lovely town north of the city that would meet both of our needs beautifully. The apartment, however, is a bit more tricky. We all know the list: wood floors, good ventilation, no signs of water damage, more recent construction, no basements, not recently painted, away from parking lots/auto repair shops/dry cleaners– anything that can spew an obvious toxic chemical our way. Tony and I found what we thought was a perfect place: a 1st floor apartment with wood floors in a beautifully renovated building. We began negotiations for the rent and lease terms, determined an amount and were told that the lease would be drafted this week. We were even willing to pay a significant finder’s fee for this place as it appeared to be “MCS friendly.”
While packing on Saturday and preparing to move to a temporary apartment for one month while the owners of the co-op we’d be renting found their new apartment, we received a call from the agent. I heard Tony on the phone exclaim loudly, “What?!? You’re kidding me!” It was Halloween after all– perhaps whatever she said was some sort of ghoulish joke. It wasn’t. We were not going to be able to take the apartment after all. Why? Apparently because I had asked the agent to have the owner consider giving us a three month escape clause in the event that something in the apartment seriously threatened my health– and, unfortunately, I could not know if that would be the case until I lived there. I had thought about it the previous week– one possible issue with this apartment is that there was a common laundry room in the basement and we were on the first floor. Would I be smelling those evil dryer sheets daily? Would I be feeling the laundry room chemicals as I slept? Would I be sick again, possibly for weeks, because I didn’t ask a hard question?
Now, having been a landlord, I realize that owners have a mortgage obligation. I was not asking these people to consider my request as a last minute deal breaker– we would have taken the apartment because we had generally done our homework and we thought it would be fine. Other apartments that we have taken have been fine, and I told them this with my written request. I explained MCS and stated that obviously I would not want to have to move because of my illness– and that while I didn’t anticipate anything happening with the apartment, I did have an obligation to pose the question because health comes before a mortgage payment. I indicated that if I did feel unwell that we would give three months notice and provide a detailed letter from an environmental medicine MD to confirm that I was not just being difficult. I emphasized that Tony and I had carefully selected the apartment based on my MCS needs and that we did not anticipate any issues and certainly wouldn’t take a request to move lightly as it would result in stress on my health, loss of a significant agent finder’s fee, moving costs, etc.
When the agent called us yesterday, she essentially said they don’t want to take a risk on me because of my health. They did not say, “No, we cannot commit to an escape clause.” We would have signed a lease regardless as we really believed the apartment would be fine– and as you know, if you live with MCS, you learn to live dodging bullets all day long. Yesterday was the first time that someone directly told me that my health was going to be cause for denying me access to an apartment. I felt like I was slapped in the face, hard. Tony and I told them, as politely as possible, what to do with their apartment and quickly scrambled to cancel our mover the next day, find a new apartment, cancel our temporary housing (which we had just paid in cash that morning!), sell furniture that we thought we would need and now no longer do need for the newer, but smaller space. It was a very good exercise in going with the flow and responding to the challenges of MCS.
Now, could I get a lawyer and make a big MCS stink about it? Yes, sure I could. Will I? No. I took the high road and quickly decided two things that would reflect how I want to live this life. I chose to send an email to educate the agent (and hopefully, therefore, the owners) about how their decision impacted many people and how their lack of communication about any concern caused incredible stress and financial burden to us. But most importantly, I thought of sharing this story with The Canary Report. Why? Because in my email to the agent I reiterated the following: “I have learned not to apologize for asking for the simple right to raise my health issue and that remains the case.” And today I got a lovely email back from the agent, thanking me for my note and apologizing for her client’s poor decision. I was true to myself and stayed an educator, which MCS cannot take away from me.
Canaries, I hope you all remember that you should NEVER EVER apologize for asking hard questions. If the world isn’t ready for them, too bad. Our health and our needs come first, and we will not be silenced. KEEP CHIRPING whether the world is ready for us or not!
~
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Government to improve regulation of toxic chemicals
Posted on Oct 14, 2009 by Susie Collins in Blog, Environment, Government Regulation, Policy, Social Justice, Susie Collins
EPA director presents new guidelines to improve regulation of toxic chemicals.
The Michigan Messenger reports momentum builds for tighter regulation of industrial chemicals; health care providers say reform of chemical regulation is key to creating public health system.
In a recent policy speech, Lisa Jackson, director of the Environmental Protection agency, called the 1976 Toxic Substances Control Act an “inadequate tool” and presented a set of guidelines that she said should steer efforts to improve regulation of chemicals. Environmental health activists, representatives of the American Nurses Association, Physicians for Social Responsibility, and Clean Water Action are urging the EPA to use biomonitoring data — data gleaned from screening certain demographics for chemicals in blood and urine — as a guide in prioritizing its investigation of chemical safety.
The Michigan Messenger reports on the EPA announcement from their state’s perspective:
New chemical regulations could have special meaning in Michigan. Midland-based Dow Chemical (NYSE:DOW), the nation’s largest chemical company, is in negotiations with EPA officials over how to handle the company’s widespread contamination of the state’s largest watershed with industrial chemicals. In the Midland area, and in other industrial and post-industrial sites around the state, people are burdened with historic chemical contamination in the environment as they also encounter new chemicals in everyday items [emphasis added].
Unlike pharmaceutical chemicals, which are often only available by prescription and only after they are evaluated for safety by the U.S. Food and Drug Administration and manufacturers are required to divulge information about possible side effects, industrial chemicals — found in plastics, food packaging, cleaning products, building materials, furniture, medical supplies and a host of consumer products — are generally not reviewed for safety by the U.S. Environmental Protection Agency.
“[W]e need to review all chemicals against safety standards that are based solely on considerations of risk — not economics or other factors ,” Jackson said, “[A]nd we must set these standards at levels that are protective of human health and the environment.
Although more than 80,000 chemicals have been manufactured, since the 1976 enactment of the Toxic Substances Control Act, EPA has only declared five unsafe.
The article explains well the problems in current chemical regulations. Given the weak federal protections, states were pretty much left on their own to strengthen the most problematic of health and environmental toxicity. We saw this when California recently initiated the first of its kind state-level chemical oversight program. The article makes the case for using the new momentum initiated by the EPA to strengthen chemical regulations at both state and federal levels.
I don’t think any of this current activity is going to bring tangible relief to those of us with Multiple Chemical Sensitivity. Both policy reform and biomonitoring initiatives are first looking at the most egregious offenders, already backed by solid science as being harmful — such as lead, Bisphenol A, mercury, perfluorinated compounds, phthalates, polybrominated diphenyl ethers, and triclosan — not necessarily the most common household chemicals that can make our lives a living hell on a daily basis. But there are trends moving in our favor in toxic chemical regulation reform and also with breakthroughs in green chemistry. Again, perhaps not activity that will bring people with MCS relief in the near future, but nonetheless positive activity when looking at “cause” of our illness.
It’s wise to remember while watching trends that government regulations do not truly change corporate practices in a systemic manner until consumers demand it. So keep doing what canaries do best: educate, educate, educate. Live by example. Continue sparking discussion and debate about toxic chemicals with your friends, family, employers, landlords and elected officials. It’s a tough job, especially when struggling with chronic illness, but it’s always tough for people ahead of the curve on medical, social and economic change. Hang in there and be aware that there are forces out there finally taking a look at toxic chemical regulation reform.
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