Archive for 'Disability Rights'

Setting the record straight about Linda Sepp’s housing situation

Posted on May 09, 2010 by Susie Collins in Blog, Disability Rights, MCS, Susie Collins

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A recent article in The Toronto Star is full of misinformation and inaccuracies about Linda Sepp’s housing problems. I’d like to clear things up.

Linda Sepp

The Star reports on Linda Sepp’s house hunting and eviction in an article by Theresa Boyle entitled Can Linda Sepp possibly be helped? The article is full of inaccuracies about Linda’s situation that I’d like to clear up.

Before I pick apart the points, I’d like to make clear that I am a friend of Linda’s. No, we have never met, but we have emailed with each other daily for almost two years. We’ve laughed together, cried together, spent New Year’s Eve together, helped many people with MCS together, hunted for informational materials together, and built The Canary Report together into what it is today. She’s been my research assistant, and truth be told, she’s been my mentor as I learned the ropes about Multiple Chemical Sensitivity and the problem of toxic chemicals in the marketplace and the environment. Linda is very smart. The information that she shares with others is solid; I never have to worry about checking her sources, she always backs up her claims with data and reports, and she’s thorough with her critical thinking.

But Linda is also very ill and completely disabled by chemical sensitivities, fibromyalgia, and electro hypersensitivity. The old house she was living in prior to eviction on May 5, her home of 19 years, was full of mold, and she also was frequently exposed to toxic fumes wafting in from the outside. She was living in a precarious, unsafe housing situation. And as her eviction date neared, she was becoming more and more ill in my opinion, as her emails became less frequest, less engaged and sometimes merely fragments of thoughts peppered with uncertainty about her future.

The process of house hunting for Linda as her eviction date of April 4 loomed was complicated and fraught with difficulty. She is what is known in the world of Multiple Chemical Sensitivity as a universal reactor, meaning she is uber sensitive to toxic chemicals, and the smallest quantity of exposure to VOCs, pesticides, laundry products and modern fragrance (which contains known toxic chemicals), among myriad other chemicals, make her very ill very quickly. Recovery is difficult. This health problem complicates house hunting, complicates finding a safe place to live. Housing opportunities that might seem a godsend to someone who is healthy or has a less serious case of MCS, cannot work for someone as ill as Linda.

So let’s look at the article written in The Star by Ms. Boyle. First up, Ms. Boyle’s description of what Linda was asking for, which the reporter couched in an incredulous tone that says to the reader “Look at what this woman is demanding!”:

The woman, who survives on an Ontario disability cheque, said she would like a “modest” three-bedroom house on three acres of land, surrounded by trees and fresh air. It should include a sauna and a sunroom, porch, patio or gazebo for reading and artwork. There should be a small barn for chicken, goats and an animal rescue. And for guests, a bunkie and detox shower.

Except that is NOT and never was Linda’s criteria for finding safe housing. That was Linda’s dream house list (every person with MCS has a dream house in mind, am I right?), that list was never the working list that her landlord nor her housing team was using as criteria, it never was what Linda was asking for. Basically, Linda was asking for a nontoxic two bedroom with clean water and fresh outside air. Period.

Next:

But skeptics question the existence of MCS. They acknowledge that people can have chemical sensitivities and allergies, but wonder if it is a stretch to say these can be a debilitating syndrome. A June 2008 article in the Journal of Environmental Science notes that there is “considerable doubt” about the condition “from the scientific community, political leadership and many in the general public who claim that it is psychological.” The U.S. Centers for Disease Control and Prevention do not recognize it, the article notes. But it goes on to say that it would be irresponsible of public health officials not to explore the possibility of MCS.

Who cares what the “the scientific community,” politicians or the general public think about MCS? What kind of reporting is that? Linda has sent Ms. Boyle copies of the current peer reviewed research on Multiple Chemical Sensitivity, which clearly shows that MCS is a physiological illness of toxicological origin. Linda is not pulling that info out of her hat, this is the peer reviewed research of Martin Pall recently published as Chapter 92 in the prestigious international reference work for professional toxicologists,  General and Applied Toxicology, 3rd Edition (2009, John Wiley & Sons).  Further, and just for the record, here’s a list of research on Multiple Chemical Sensitivity compiled by Professor Anne C. Steinemann and Amy L. Davis at University of Washington Seattle; this document lists about 100 citations for peer-reviewed journal articles that support a physiological basis for MCS. And I will note, the Centers for Disease Control just issued a chemical- and fragrance-free policy in all their offices nationwide because of the negative effect of those products on the health of their employees– the very products that make people with MCS ill.

Next:

Before forcing her out, W.J. [Linda's landlord] made the unheard of offer of buying a $200,000 house anywhere in the province and renting it to her for $500 a month. Her wish-list to the landlord was more reasonable than what she had provided to the city. She asked for wood floors, few stairs and access to a source of organic food. A house fitting the bill was found in Lindsay in February 2008, but after visiting it Sepp turned it down. It smelled of baby powder and made her feel sick.

W.J. proposed other homes, one in Huntsville and another in Lanark. The landlord offered to buy a Solo home, a prefabricated building that could be adapted to someone with allergies. All offers were nixed.

Although such an offer can seem above and beyond anything due Linda by her landlord, and although it can seem that Linda was unreasonable in refusing all offers, anyone with MCS knows that this deal is fraught with peril. At the most basic of levels, we all know the perils involved with a house that has been contaminated with products made from toxic chemicals like air fresheners and personal care products. I know dozens of cases of people with MCS renting homes that they thought they could decontaminate, only to be made sick for a year or longer until their lease ran out.

But Linda’s situation is more complicated than even people with MCS seem to understand. Linda was living in Toronto, unable to leave her house, and had people to shop for her. Part of her decision on taking the houses offered by the landlord was that she had to gamble that she would be able to move to the house and recover enough very quickly to be able to drive at least once a week, perhaps an hour away, to do her own shopping at organic markets. If she moved to a rural place in Ontario, not only would she have to be able to shop for herself, but also she would have to be able to handle the winters in Ontario alone in a rural setting. These are both huge responsibilities to take on if you are housebound and have been depending on people doing your errands for you. You can’t just “get it delivered.” The truth is that Linda had to take under consideration whether or not she could manage living alone rurally. That is a legitimate concern. Who knows if there would have been people locally that could help her after the move?

Next:

Friends and staff from the city’s shelter support office pored over real estate listings and thought they found the perfect solution: a $200,000 home in Bobcaygeon that had been built for someone with MCS. But Sepp turned it down because W.J. refused to pay an extra $45,000 to have a couple of extra walls installed. Besides, it had bad feng shui, she said.

This is by far the most egregious of errors in the article because it makes Linda look very bad when in fact Linda did no such thing as stated.  The landlord refused to purchase that house based on it being LISTED at $245,000, which was over the landlord’s cap of $200,000. The extra $45,000 had NOTHING to do with Linda asking for any walls to be built. The comment about the “bad feng shui” had NOTHING to do with Linda refusing an offer; at the most it was an off-handed remark made by Linda way after this house was discussed and rejected BY THE LANDLORD. In fact, had the landlord said okay to buying that house, Linda would have accepted it– I have the emails from her saying that she was ready to accept that house before she heard the landlord’s refusal to buy it.

I have received many negative emails and comments on both my blog and Linda’s blog (for which I am the admin) from people who think Linda is acting unreasonable. All the comments were generated because of this article by Theresa Boyle. I have not released any of them because I can’t see how they add anything valuable to the discussion, given that they were generated by misinformation.

To Ms. Boyle: Please be very careful about how you report on this story. Check your facts. Be open to exploring current research on MCS. Cross reference your information on Linda’s situation from two primary sources, as is your responsibility. This is a drama playing out in public about a woman whose housing problem represents the housing problems of thousands of people with Multiple Chemical Sensitivity. Please do not add to the din of misinformation that hurts our community and adds to our struggle for full recognition, full health care, and full social services.

And to those of you getting mad at Linda for her not accepting so many offers of housing: Please try to use this as an opportunity for practicing love and compassion. Judge not lest you be judged. Linda is a member of our community, a valuable member, and this is a time when we can open our hearts and do nothing but love each other. Anger serves no purpose whatsoever. Our job, as human beings on this blessed Earth, is to be kind and to love. Just do it.

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MCS Awareness Month: Conversation starters and letters to the editor

Posted on May 08, 2010 by Susie Collins in Blog, Disability Rights, MCS, Susie Collins

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Wearing something symbolic that starts a conversation, and writing letters to the editors of your local papers, are both excellent ways to increase MCS awareness!

Kris Kuipers and friends sewed electromagnetic shielding cloth into a cape for her to wear when out in public, and appliqued the canary on the front as a conversation starter for educational purposes on Multiple Chemical Sensitivity and Electromagnetic Sensitivity. "It works!" Kris says.

Canary Report member Kris Kuipers shares with us a letter to the editor she’s written. She says you are welcome to use it as a template for your own letter.

Dear Editor,

May is Multiple Chemical Sensitivity Awareness Month. According to the Environmental Protection Agency, MCS is a diagnostic label for people who suffer with multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances. Sufferers develop symptoms of toxic exposure from a variety of agents. The most common are molds, smoke, and products containing fragrances, petroleum, formaldehyde, pesticides, and herbicides. Fragrances are added to everything from personal care products to laundry and cleaning products. Symptoms of exposure to these agents ranges from headache and fatigue to reactive airway distress, neurological problems, and seizures.

I want to take this opportunity to increase awareness of this serious illness and encourage prevention. Over 48 million men, women, and children of all races that are affected. According to MCS America, “Even though MCS is of widespread epidemic prevalence, public awareness of the toxicity of common environmental insults and ways to manage and accommodate MCS remains limited.”

Chemical exposure creates functional limitations for people with MCS, which requires reasonable accommodations under the Americans with Disabilities Act. Fragrance free policies for work places, schools, churches, and public bathrooms can be implemented. MCS develops from either a single large or chronic exposure to chemicals. Replacing all chemical filled products in the home with natural and fragrance free safe products, as well as caring for lawns and dealing with bugs in a non chemical way, may help to prevent the development of MCS.

I hope this letter helps educate our public in the use of these fragrances and chemicals and how harmful they are not only to people with MCS, but to all of us. I welcome questions. Please do not hesitate to give me a call. I would love to chat with you in how to implement these positive changes.

Sincerely,

Kris Kuipers

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Linda Sepp is evicted from her home this morning, spending nite in car

Posted on May 04, 2010 by Susie Collins in Blog, Disability Rights, Linda Sepp, MCS, Susie Collins

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The day Linda Sepp had dreaded arrived with a knock at the door this morning.

Linda Sepp

The Star reports on Canary Report contributor Linda Sepp‘s eviction, which took place at 10:00 a.m this morning. I believe it’s a fairly accurate report on the events that transpired.

Toxic dilemma: Landlord, non-profit centre attempt to find replacement home for woman with chemical sensitivity, but without success.

The 50-year-old woman with chemical sensitivities was roused from her sleep by enforcement officers from the sheriff’s office. After a four-year eviction battle, they had come to throw her out of her High Park apartment.

Four enforcement officers dressed in white haz-mat coveralls and face masks — meant to keep Sepp safe from them should they have worn cologne or washed their hair with strong shampoo — hauled the woman’s possessions onto the front porch. From there, her 82-year-old father lugged bags and boxes down a flight of steps to her car.

“I’m beyond panicked. I’m blank. I’m numb,” said Sepp, who has Multiple Chemical Sensitivity (MCS), a condition that causes rashes, headaches and burning sensations when she is exposed to chemicals in the environment.

[..]

She considered spending the night under the trees in High Park but changed her mind when it started to rain.

Instead, she has opted to camp out in her car in the dusty parking lot of a Buddhist temple in the west end.

Even though it’s beside a mound of garbage bags and a construction site, she says it’s the lesser of many evils.

“I don’t have anywhere to go. I’m just at a loss.”

Click here for full report at The Star.

Click here for other stories on Linda’s housing situation.

Click here for Linda’s blog.

5/5 UPDATE: Last night, it was decided that staying in her car was not safe, so Linda slept on the balcony of her father’s condo.

5/6 UPDATE: Reported in Health Zone: Woman with chemical sensitivities camps out on condo balcony.

5/7 UPDATE, FROM LINDA: Mini update – I’ve just talked with MP Gerard Kennedy and he is genuinely looking for more help and ways to resolve this mess. I love you all!

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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

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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:

Rural Portable Buildings

Cabins & Sleepouts

Sleepouts Galore

Yurts

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

Attached: Medical Certificates Attached of Kevin Boyes for Severe Illness from Exposure to Common Legal Chemicals

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

Toxic Chemicals in Our Bodies

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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Linda Sepp faces eviction any day now with no safe place to go

Posted on Apr 13, 2010 by Susie Collins in Blog, Disability Rights, Linda Sepp, MCS, Susie Collins

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How does a disabled person with acute chemical sensitivity, who’s dependent on government assistance, prepare to move?

This photo is one of Linda's submissions for The Canary Report's 2010 calendar, expressing her despair at her unsafe housing, the toxic air, and lack of safe, nontoxic clothing. ©2009 The Canary Report, may not be republished without permission.

Those of you who follow The Canary Report know how important Linda Sepp is to our Canary Community. She’s a wealth of information about chemical and environmental sensitivities, and shares her knowledge freely through blogging, comments, posts on our forum, email, facebook, and her blog.

Linda carries the title of research assistant here at TCR, but in reality, she’s been my mentor for the past two years. TCR would not be half the blog and community it is without her. Linda is relentless in holding us all to the highest standard when it comes to dealing with toxic chemicals; she will not let anyone get away with skimming by an important issue or settling for a product that might be “okay” but in reality isn’t nontoxic. She makes us all better in our cause for toxic chemical policy reform, better in our cause for human rights as disabled people, and she helps us live safer, more productive lives.

But she does all this while being completely disabled by chemical sensitivities, fibromyalgia, and electro hypersensitivity, and living in a precarious, unsafe housing situation herself.

For years, she’s been the last resident in an Ontario neighborhood slated for demolition by a landlord wanting to raze the area to build new. The place is decaying, crumbling and frequently vandalized. Linda’s house has a leaky roof and basement, problems with mold, a contaminated water pipeline, and a leaky gas stove (now disconnected). She doesn’t want to be there, but where is she to go?

The problem is, how does a disabled person with acute chemical sensitivity, who’s dependent on government assistance, prepare to move? How does a disabled person with acute chemical sensitivity secure and install a whole house water filtration system so she can bathe and wash clothes properly (not just for everyday health but also in preparation for a move); secure safe clothing and a washing machine in the first place (there is a reason why she’s naked in the photo, she only has about five articles of safe, uncontaminated clothing to her name); conduct a housing search and then properly prepare that house for an uber sensitive person? How does she do that? And if she can’t do it herself, how does she find a knowledgeable advocate to help navigate the entire process?

On Linda’s blog, she writes eloquently about her dependence on government aid from a social service system that refuses to understand the complexity of chemical sensitivity. She describes the evidence she has from an environmental physician who declared her medical needs to include a nontoxic home with clean air and water (a simple, basic need you’d think, no?), and yet neither the medical nor government systems seem equipped to assist Linda in accessing the solutions to those needs. Once again, someone with chemical sensitivity is slipping through the cracks.

So here’s the kicker: Linda’s eviction date was April 4. Aside from a couple of valiant last minute efforts (which have failed to yield anything feasible), all the agencies and people you’d think should be there to assist—social workers, physicians, elected officials, the landlord—have all receded like water before the coming of a tidal wave.

Given that the April 4 eviction date was set by the court, the landlord has the power to put in motion the sheriff’s removal of Linda from her home. And should that happen, then what? The injustice of this situation is staggering.

###

04/24/10 UPDATE:

Last week, Linda’s Member of Parliament contacted her current landlord to see if a new deal could be reached on securing Linda a safe home, but the landlord declined, saying the April 4 eviction deadline was past so all offers were off the table. (As background, Linda’s landlord had offered to buy and renovate a rental home for Linda at a total cap of $200K, including the consultation of an eco-builder, but none of the homes found on the market met Linda’s criteria.)

Linda’s physician is in phone contact with her and has asked for more tests, which Linda has scheduled for next week.

Toronto Community Housing, which provides housing for low and moderate income households, prepared an apartment for Linda this past week. Linda says it won’t work because it does not meet her criteria; she has declined the offer.

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$100K awarded to woman with chemical sensitivity denied proper accommodations at work

Posted on Mar 10, 2010 by Susie Collins in Blog, Disability Rights, MCS, Susie Collins, Worker's Rights

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Woman with chemical sensitivity awarded $100K for being denied proper accommodations at work; her coworker’s perfume made it difficult for her to breathe.

Modern perfume contains known toxic chemicals that can cause serious cognitive and respiratory problems in people with chemical sensitivity.

On Point reports a Detroit city planner with an allergy to perfume is savoring the sweet smell of legal success after the city agreed to pay her $100,000 and be more sensitive to the chemically sensitive.

The agreement -– obtained by On Point through a public records act request — settled Susan McBride’s lawsuit under the Americans With Disabilities Act which alleged the City of Detroit failed to reasonably accommodate her allergy after she complained that a co-worker’s perfume made it difficult for her to breathe.

Some critics attacked McBride for being overly sensitive and abusing the court system. But many workplaces are now perfume-free and a judge in November 2008 denied the city’s motion to dismiss, ruling McBride could proceed with a disability claim “based on the major life activity of breathing.”

As part of the settlement, which the parties signed last month, the city will post a notice on bulletin boards in its offices announcing that “Our goal is to be sensitive to employees with perfume and chemical sensitivities”

Let’s hope it sets precedent for future cases. If you have Multiple Chemical Sensitivity and are having trouble with your employer giving you proper accommodations, you might like to share the agreement with them. This is an access issue, the same as any other disability protected under the ADA.

Photo credit

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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

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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

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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.

Link

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Request for help composing an advance letter to health care specialists

Posted on Feb 01, 2010 by Susie Collins in Blog, Disability Rights, MCS, Susie Collins

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What should be included in a letter to a physician that arrives before WE do?

Elaine Willis, who has Multiple Chemical Sensitivity and a host of other illnesses, contacted me for help in composing an advance letter for her health care specialists. She’d love to have input from as many people with MCS as possible. Please leave your thoughts in the comment section.

My family doctor (primary care physician) has asked that I prepare the letter that will go to specialists prior to my first arrival. It needs to elucidate in few words what to do to make my visit safe. It must also explain MCS (Multiple Chemical Sensitivity) to a physician who may have had no education about or exposure to a patient with the kind of symptoms I experience. My symptoms can be mild (for me) which may include coughing, asthma, brain fog and increased ataxia (you see I already I have ataxia – the hereditary kind). Or, they can be medium, slurred speech, severe ataxia, altered blood pressure, complete inability to focus or answer questions, stuttering, poor word-finding skills and dizziness. And of course, the biggie… anaphylaxis… and it happens too often.

So, my desire with this post is to engage the assistance of others with MCS. What should be included in a letter to a physician that arrives before WE do? First appointment of the day? No waiting? This is a brainstorm – so all ideas are accepted. I will choose the ones I want for my letter and post it. Maybe it will be useful for others, too!

Please leave your suggestions here in the comment section. Thank you!

~~~

Read more about Elaine here:

Perfume blogger dismisses concerns from a member of our community

Canadian teacher fights for her right to workplace accommodations

Meet Elaine Willis

~~~

This post was originally published on Elaine’s blog and republished here on The Canary Report with her permission.

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Poster for fragrance-free hospital care

Posted on Jan 26, 2010 by Susie Collins in Blog, Disability Rights, MCS, Susie Collins

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This poster was designed as a public service project for patients requiring in-hospital care at hospitals that are still lacking a proper fragrance-free policy for the staff.

The poster comes in two versions: one for Multiple Chemical Sensitivity and one for Severe Allergic Asthma. Click here to download either one in print resolution.

I think the posters are FAB, but I knock off a couple points for using the word “allergen” in the MCS poster. As we all know, MCS is not an allergy, it does not have any of the physiological markers of an allergy. But that criticism aside, this poster rocks. I especially love the part where it says, “Patient is not a Fragrance Crash Test Dummy. Don’t just ‘come & see if it affects the patient.’”

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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

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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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