Because people are busy and would prefer to leave the problem solving to the “experts,” they choose to believe there are “magic pills” and that “help is on the way.” They develop attitudes that result in tunnel vision and can literally blank-out any other information and solutions, including prevention. Unfortunately, for those with Multiple Chemical Sensitivity (MCS), the media has been unduly influenced by the chemical industry, an industry that would like everyone to believe that many toxic chemicals and pharmaceuticals are a necessity. Their denial that MCS is caused by toxic exposures is confronted in the toxicology literature that no one reads—until they get sick. What can those of us with MCS do?
DO NOT BE INTIMIDATED.
We have all experienced discriminatory phrases: MCS is a psychological disorder; those with MCS are not covered under the Americans with Disabilities Act; they were abused in childhood; they are lazy and don’t want to work; and so on. Many statements have come from medical professionals who have not been trained to recognize toxic poisoning and nutrition depletion (or don’t take the time to read the literature).
REFER PHYSICIANS WHO DISCRIMINATE TO THE NATIONAL ENVIRONMENTAL EDUCATION & TRAINING FOUNDATION AT WWW.NEETF.ORG.
While help may not always be instantaneous, if we report each violation to the appropriate agency and to our federal and state representatives, we will slowly create change. If representatives hear from as few as five or six of us on the same topic or issue, they will act!
EDUCATE THOSE WHO WANT TO BE EDUCATED.
Don’t waste your time on those who don’t. If your family doesn’t support you, adopt your own new family. Build support systems that are willing to accommodate disability. When some accommodate you, make this known to others. Write letters thanking those who do.
ADDRESS KEY MEMBERS OF ORGANIZATIONS IN PURSUIT OF SOLUTIONS TO DISCRIMINATION AND ACCOMMODATION PROBLEMS.
Write to those who have the ability to make policy changes (e.g., for hospitals, write to the administrator). If your hospital won’t accommodate you and you are covered by Medicare, report the hospital to your state’s Medicare Quality Improvement Agency.
RECOMMEND SOLUTIONS WHEN ASKING FOR MCS ACCOMMODATION.
Most people and businesses do not know how to accommodate us. Recommending simple substitutions can help. Scented hand soap and cleaning products were concerns at our perfume-free Prevention Convention held at Cleveland’s Playhouse Square Center in August. Magick Botanicals and N.E.E.D.S. provided donations of perfume-free and less toxic products as a solution to the problem. The end result was spectacular. The theater manager heard so many appreciative comments about the hand soap that he is planning to use this product in all dispensers.
DON’T COMPLAIN TO EACH OTHER.
Strategize with others when possible, but complain where it counts, in the right tone and in the right way. Share your solutions and offer to obtain sample products for others to try. Make a list of substitutes (based on what you can tolerate, while still meeting legal requirements for sanitation). Meet people in the middle and don’t expect change to happen all at once. Change takes time and work. We cannot sit and wait for someone to help us. Each of us is that “someone” and we must all do our share. As a bonus, doing something constructive will benefit your self-esteem and self-worth.
We have received so many calls from MCS people in hospitals who are not being accommodated. Educate your hospital before an emergency or illness arises. Ask to meet with the administrator to discuss your needs. Give your disability requirements to your physician in writing and have him/her order your accommodations.
ATTITUDE AND CREDIBLE TOOLS ARE IMPORTANT.
Choose your MCS educational materials wisely and be absolutely certain they contain credible sources. Do not burden busy people with too much literature. Suit your educational tools to your audience—show them what others in their industry are doing to accommodate those with MCS. Above all, approach others as you wish to be approached. Be courteous, considerate of their time, and non-threatening.
GOOD NEWS: MCS IS IN THE PREAMBLE TO ADA/ABA GUIDELINES. (SEE PAGE 1)
Those with MCS whose life functions are affected, and who otherwise qualify, have always been covered under the Americans with Disabilities Act (ADA). The ADA requires that those with disabilities be accommodated. To obtain more information about ADA law, visit your library or http://www.access-board.gov/.
Due to controversy and discrimination, as well as our general inability to gain inclusion in the disability population, many of us wrote to the U.S. Access Board with our concerns. As a result, the Access Board created an MCS ad hoc Committee to research the causes of MCS barriers and to determine what guidelines are needed to make buildings safer and accessible for those with MCS. They contracted with the National Institute of Building Sciences (NIBS) to investigate indoor air quality. Four of us with MCS are on this ad hoc committee working toward finding solutions to the barriers. It does pay to be the squeaky wheel—you can make things happen too and be part of positive change. One person can make a difference.
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