The broadest possible integration of disabled people is the goal of all countries which are signatories to the UN Disabilities Convention. The countries which have signed this convention and ratified it, may be viewed here:

Rights and Dignity of Persons with Disabilities

This internationally binding document has validity for those countries who have signed and ratified it. Direct efforts should have been pursued by the signatories so that all disabled children receive an education. No disability must be preferred over an other. MCS – Multiple Chemical Sensitivity is a physically caused disability which needs recognition in the educational realm.

In the U.S. and Canada, there is a steady growing number of schools and local univer- sities that are integrating policies for chemically injured students and adapting conditions to include this disability. The transition has been mainly on a volunteer basis initially, with perfume bans and an effort to use chemically free cleaning products.

Students with MCS

There are severe cases of children and young teens with chemical compromises which seem to have little hope of a successful future due to their disability. The chemical triggers are so overwhelming on their various physical systems that they are unable to attend a traditional school setting without well thought out appropriate accommodations.

A big problem for these students in traditional school settings is falling behind academically. Due to their reaction difficulties at school, they miss a lot of instructional time. Parents report their children missing hours, days, and sometimes months of school , and trying to catch up at home with all the required instructional materials from the teacher(s) is extremely difficult.

Then there is often trouble with the school or school authorities. Whether the modifications for these disabled students will be feasible to get the education requirements needed depends on the consideration of the school, the classmates, building maintenance, chemical substances used at the school site, in and outside the individual classroom.

Questions to be answered in individual countries:

• How does my country integrate children and young people who have chemical sensitivity?
• What are the guidelines for dealing with chemically sensitive students in a traditional school setting or what accommodations can the school offer?
• Are schools in my country responsive to students with MCS?
• Do authorities in my country have policies in place which enable chemically sensitive students to achieve a quality education?
• Does my country cover free internet schooling education for students suffering with chemical sensitivities?
• What policies would schools have to change in order to successfully integrate students with MCS?

When the book, “Missing. A Life Destroyed by Chemical Sensitivity” came into bookstores, the sales were surprisingly high. The author of this book, Eva Caballé is chemically sensitive and can exist only within the walls of her safe apartment. Several air filtering machines run day and night. She can tolerate only a few foods, and her water must be specially filtered. Visitors are not allowed into her apartment because the fragrance and detergent residues could cause her to experience a severe reaction. Despite the severity of her disease, this Spanish woman insists on enlightening the public about this condition. Her blog, NO FUN, became her mouthpiece and is read daily by thousands.

Through interviews which Eva’s husband David gave on TV, radio, and to newspapers, Eva’s story was known before her published book was on the shelves. Now her book will be made for a radio series.

Last month, David gave interviews for a radio program called “Vital Space” which discusses chronic illnesses. The program producers were enthusiastic about Eva’s book and want to make the public more aware of chemical sensitivity. Details regarding MCS are not yet well know in Spain.

The response was enormous, which led to the idea of the MCS book as a radio series.

Eva and her husband David agreed, and wrote an editorial for this series. Two professional actors, whose voices are very similar to Eva and David have been hired. A moderator has also been hired to coordinate the recordings. The whole book has been set to music and accompanied by background music. Next fall the series will begin. For each chapter there will be ten minutes of airtime available. Over a period of 21 weeks radio listeners will experience the naked truth about Multiple Chemical Sensitivity.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, July 26, 2010.

Translation: Many thanks to Christi Howarth!

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Articles written by Eva Caballé:

• Naked Truth about MCS
  
• Metamorphosis insinde Multiple Chemical Sensitivity
• Dreams that kill
• Manifesto – We know they are lying to us
• Interview with Eva Caballé about Multiple Chemical Sensitivities and her book

An Account from the Editor of the CSN-Blog

Several years have passed. We still had local self-help groups and met monthly. We kept contact by phone, because barely none of our members had internet. Most of them became ill by chemicals at the workplace. Though it is ten years ago, we still remember certain people or episodes. Last week when a woman with Chemical Sensitivity (MCS) and severe toxic injuries sent an article for the blog, in which she reported on the struggle with the German Federal Insurance Institution for Employees because of a scheduled Rehab, we returned to a case.

Marked by chemicals

We had a meeting of our local “Workgroup of Chemically Injured”. The guy was rather young but looked quite older. He entered the room escorted by his sister. She had to support him, because the young man lost his sense of balance. After the speeches we chatted. The Sister said her brother was already exhausted as he tried to listen and he is nearly unable to speak. Once he worked at a big car tire manufactory. Now he is a health wreck. In spite of his harrowing state of health, the social pension fund created stress and refused to pay. The Workers Compensation didn’t act any more cooperatively: they denied realizing a connection between the desperate state of health and the chemical exposure at work. Though he was on the ropes, the young man was not willing to accept the experience of injustice by these insurance companies in addition to his physical suffering.

Brain damage by solvents

His sister told that he has gone through brain surgery. They hoped to manage his vertigo and his brain symptoms with a demanding operation. There was no improvement – rather the opposite. Most of the day he stayed in his room and watched videos. Contact with his friends was nearly broken for two reasons. The young man was no longer capable of conversation and he was unable to drive his car to his friends, who lived in neighboring locations. Friends who still came to visit him in the beginning were completely shocked by the bad health of their peer and could hardly deal with the sight. This few visits were the result, and then nobody came again.

Injured by chemicals at workspace

But for all of that the family of the man endeavored to enhance his state. The sister said that his condition isn’t always the same, so she hopes that there will be some turn for the better. She asked what the family may do to achieve a bit of health stabilization. At that time, my first advice to her was to arrange the man’s room to be absolutely free from chemicals and to abandon plastic materials completely, because he had become ill from synthetics, solvents and rubber.

The sister listened to my detailed explanations, how a clean room for a chemically sensitive person should look like. After that she rated the room totally inappropriate, in which the former quite vital young man spent nearly all of his time. There he had a TV, a video recorder, many video tapes, carpeting, a normal foam mattress in the bed and vinyl wallpaper. A room like the ones of many millions other young folks.

Aid by the family

The family was serious about it. They wanted to see the young man healthier again. They dedicated all their efforts. Two rooms at ground level were arranged for him. They tiled the floor and finished the walls with safe natural paint. They obtained a good air purifier, a mattress from natural material and made everything compatible.

Scarcely two months later the sister called me by phone. As she started to speak, the depression in her voice had completely disappeared. It is unlikely to believe, but her brother feels better worlds apart. At Saturday he even was able to visit his friends in the neighbor town riding his car without any help. She said, the whole family is overjoyed, because they didn’t consider such a recovery possible any more. The young man only became dizzy, when he was exposed to certain chemicals. He learned to detect such situations and avoided exposure. He left instantly when he realized them. Step by step his former vitality returned. The sister called more often and proudly reported on his further progresses.

Rehab in face of the delicate state of health

Then there was another call. Completely upset, the sister told that her brother received a letter from the social pension fund. He’s scheduled for a rehab. They rang up to tell the official from the German Federal Insurance Institution for Employees about the state of the young man and that he needs a chemical free environment and organic food. There was no understanding: he was liable to cooperate or otherwise his entitlement under pension scheme will be lost. The result of a call to the specified rehab clinic was that nothing there met the requirements for the young man’s health. Nevertheless he had to go into the regimen, they wanted to estimate his working ability and stabilize him, as they said.

Bring a wheelchair

At the next call, the voice of the sister was nearly dead. She told that her brother really had been in those rehab. She picked him up yesterday. He was there for nearly four weeks. When she phoned in, she was not permitted to speak with her brother. This was not beneficial for the therapy, they said. The day before yesterday they called her in the morning. She was told she could pick up her brother and may please bring a wheelchair.

Anger and pain

The sister reported that she broke out in tears as she came for her brother. No trace was left of the previous improvements in his health. His state was worse than before all the measures which had been taken by the family with great efforts and financial costs.

She had to carry her brother into the car helped by a male-nurse. She asked the nurse what had been done with her brother in the rehab. He shook his shoulders and turned his view to the floor. At this moment she had boiled with rage and went into the building then and closely looked at it. Heavy chemical smell from carpeting engulfed her. It’s just newly installed, so it still smells, the nurse told her. She asked to be shown to the room. Carpeting, smell of disinfectants, particle board furniture etc.

The refectory, in which her brother was urged to take his meals, was more than 100 meters away. To reach it he has to pass a long hallway without windows for ventilation, floored with carpeting which badly smelled from chemicals and adhesives. He repeatedly begged to be allowed to have his meals in the room, which was not allowed. Other patients even had offered to bring him the meals to save the staff from extra work. The directive was not changed; the young man had to resort to the refectory for the meals, where he additionally was exposed to perfumes, after shave and other scents. As he became unable to make it through the long hallway afoot, he got a walking frame, shortly later they gave him a wheelchair.

The indoor pool of the rehab was near the brother’s room. The odor of chlorine flooded the whole area. In spite of his heavy reactions to chlorine he had to take part in the exercise therapy in the swimming pool for several times. He was exempted from participation when he nearly “drowned” in the pool, because of a reaction.

In a strained voice the sister said after her report: “They have not made my brother healthy, they have executed him and now I know why I never was allowed to have a word with him. Any health success he had before the rehab therapy is destroyed.”

Health decline by rehab

This is no isolated case even if it is in his consequences one of the most worst cases ever reported to me. There are no rehab facilities adapted to the needs of chemically sensitive patients in Germany.

If patients with Chemical Sensitivity scheduled for a rehab ask about the local environmental conditions and explain that they cannot stay in such premises because of their reactions to chemicals, they were blamed for a lack of cooperation.

Some chemically sensitive persons had to accept a substantial decline of their health, because they were scheduled to rehab clinics which offered neither organic food nor chemical free environmental conditions, and where the smell of scent agents and disinfectants flooded the whole building.

Many chemically sensitive retirement pensioner aspirant tried to hold out – or managed somehow to hold out, to avoid being alleged for having not “cooperated”. These chemically sensitive patients feared to forfeit their pension claim. An enhancement wasn’t ever reported in a single case. On the contrary: what the chemically injured persons had regained by many restrictions and a environmental controlled living space was lost.

Finally? Hopefully

But it seems the German Federal Insurance Institution for Employees sees reason to show some understanding. A single mother struggled until the Insurance understood. Finally, the rehab measure for which they put her under heavy pressure was withdrawn, accepting her MCS and due to the lack of a suitable clinical facility for chemically sensitive patients.

Author: Silvia K. Mueller, CSN – Chemical Sensitivity Network, April 6, 2010

Translation: Thank you very much to BrunO!

Proof-reading: Thank you very much to John!

Related articles:

• The psychogenic Thesis for environmental diseases – No value for Science, destructive for legal Rights
• How to become a MCS-Activist in less than 365 days? Have look at Spain!
• Medicine needs shift in paradigm to focus on Environmental Medicine
• The last few months of the life of Angelika S. who was chemically sensitive

Yesterday (Feb 2, 2010), in an independent student newspaper from the University of New Hampshire, a professor of chemical engineering appealed to the community to take “Canaries” into account regarding the use of chemicals and especially scents. He spoke of those persons who suffer from Chemical Sensitivity and who have to be seen – like those former canaries in mines – as indicators for toxic chemicals.

Some American and Canadian Universities have a “Scent Free Policy” which means that the use of perfumes and products containing scents is prohibited within these Universities. All visitors have to meet this policy. It allows students with allergy and chemical sensitivity to work and study.

Professor Ihab Farag, Chemical Engineering Department:

Many of us are familiar with canaries, the beautiful, colorful birds that tend to sing most of the time. Canaries also saved many human lives in coalmines. This is because canaries are much more sensitive to toxic gases than humans. Miners would take canaries with them in the coalmine. If the canary stopped singing and fell (or died), the miners knew to leave the coal mine quickly to safety.

There are individuals who have developed a very strong sensitivity to many common chemicals. These people can be very negatively affected and irritated by fumes, chemical cleaners, disinfectants, cigarette/cigar smoke, engine exhaust, solvents, etc. These people are often called “Human Canaries” of the modern world, because of the chemical sensitivity similarity to that of Canaries. Human Canaries of the 21st century tend to be very strongly irritated by everyday chemicals like perfumes, hair products, shampoos, shower gels, after shave lotions, antiperspirants, deodorants, hand sanitizers, chap sticks, finger nail polish, etc. Human canaries look the same as other people, and when you see one you probably will not recognize he or she is a human canary until an offensive toxic chemical triggers his or her sensitivity.

Please be considerate to human canaries and help them to enjoy life to the fullest. One way you can help the human canary and at the same time lower your exposure to undesirable chemicals, is to go fragrance-free: avoiding perfumes, and fragranced personal care products.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, February 2, 2009

Reference:

Chemical consideration to the Human Canaries, Ihab Farag, Professor, Chemical Engineering Department, Letter to the editor 02-02-10, The New Hampshire, Independent Student Newspaper at the University of New Hampshire since 1911, Februar 2, 2010

It took eight years until a doctor was able to make a correct diagnosis

The German newspaper Rheinische Post, one of the most noted papers in the Lower Rhine region, published an article about a man who hopped from doctor to doctor for eight years, until he finally got the right diagnosis. He responded to nearly all chemicals, even in lowest concentrations, which are almost omnipresent in everyday life. This was dismissed as mental problem for years. Then at last, the man from Rhineland received the proper diagnosis from a South-German physician: MCS – Chemical Sensitivity. If there was more focus on environmental medicine, cases like this current from the Rheinische Post, were avoidable.

Although he had physical troubles, he was told his problem was psychological

Ralf T. did a lot of sports until he developed more and more allergies. In addition to allergies, he experienced an increasing number of troubles, but no doctor could make a correct diagnosis and find the reason. The Rheinische Post lists the symptoms: “breathing problems, chronic fatigue, burn out, nausea, headache and many more”.

Cause of the disease: toxic adhesive

The graduate in sport science was a trainer in a fitness studio. An adhesive which was used to glue the flooring in his apartment ruined his health. It caused gas emissions of toxic chemicals which according to the Rheinische Post injured his immune system.

No help from the German obligatory health insurance

Now Ralf T. has to live in isolation and manage without money too. He would like to arrange his living environment to be toxic free to improve his health. But the attitude of the health insurance prevents such efforts. The Rheinische Post reports that the 52 year old wasn’t granted even basic things like a special bed. The insurance just hides behind regulations. There are no considerations what is indispensable to life for this man with environmental illness. He lacks any strength to resist.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, January 4, 9010

Translation: BrunO