March 13, 2000

Dear Access Board Members:

RE: 36 CFR Parts 1190 and 1191; [Docket No. 99-1]; RIN 3014-AA20

It has been my pleasure to work with board members and consultants. I even had the pleasure of meeting some board members in October 1998 when you visited Oakland, California to learn more about access for the chemically/electromagnetically injured.

Today, I write as a private citizen.

I have not only had my life turned upside down by the toxicity of commonly used fragrances and pesticides (also scented so people do not object to inhaling those toxins), but I have subsequently been denied my right to access to gainful employment, to courts (for jury duty, as well as when our car was stolen), healthcare, religious services, restaurants, movies, the theater, opera ... I am even in jeopardy should we care to take in a ballgame in an outdoor park, or walk in the woods, or wish to spend time at the beach.

One may not readily comprehend that access is denied or threatened in the great outdoors, but the fact remains that the synthetic fragrance chemicals can and do overwhelm Mother Nature, and therefore those of us living with chemical injury. I bring this up, in an effort to point out the magnitude of our access problems. While access for the chemically injured seems daunting, simple, cost-effective measures can be taken to make our access less problematic.

Regarding access to work: I was a valued employee for 23 years, but was forced to retire because there are no standards set for access for the chemically injured -- who are often disabled because of workplace practices, as was I.

Despite the fact that I had tried to inform my employer (a government agency) of various access suggestions by the Job Accommodation Network (JAN - a service of the President's Committee on Employment of People with Disabilities), as well as those contained in the document by California's late state senator, Milton Marks, "Access for People With EI/MCS and Other Related Conditions" (available at http://ehnca.org/www/books/eimcsf1.htm ), my former employer chose to ostracize me to a more toxic office, two floors away from my colleagues, rather than even try to implement my suggestions. They claimed I was a "loose canon" and also that I was "all over the alphabet ..." thereby giving them the excuse to not even try the most simple and frugal suggestions for my access.

And as I referred to my workplace access, I would like to direct the Board's attention to the recent work of Ms. Tracie DeFreitas Saab M.S., C.R.C., a Human Factors Consultant for JAN. Her document, "Work-site Accommodation Ideas for Individuals Who Experience Limitations Due To Fragrance Sensitivity," is available on JAN's website at http://janweb.icdi.wvu.edu/media/fragrance.html This document was not available while I was working, but as it is now, I believe the board should study it as it ponders the right to access of the chemically injured. I should hope this document is printed out and made available to the entire board.

The sad fact is: Unless standards are set regarding access for the chemically injured by the body charged with doing so, few businesses or government agencies will implement their own. You must know that. Your board would not exist if workplaces, school administrations, healthcare facilities, transportation systems, houses of religious worship, government agencies, businesses, et al., "did the right thing."

Today I ask that as you hear testimony from persons requesting that you accept the chemically/electromagnetically-disabled into your venue, please consider the fact that fragrances are chemical formulations that are produced to be inhaled -- whether applied directly to bodies as with personal care products, or released to the air as from air "freshener" devices affixed to walls or emitted through air-flow devices, or as a mechanism on bathroom stall doors that spritz one's body -- often the face -- upon opening the door.

Both the body's respiratory system and largest organ -- the skin -- function quite efficiently to bring the toxic chemicals into one's body. The chemicals enter the blood system, cross the blood-brain barrier, target organs and store in adipose (fatty) tissue. Yet there is no industry research data available on the consequences to health as a result of our inhaling and/or absorbing these synthetic, toxic chemical products.

These seemingly ubiquitous, marketed as benign, products have not been studied for neurotoxicity nor for systemic effects. They are volatile organic compounds that pollute the air for all. The consequences of such air pollution are manifesting themselves in increased asthma rates and deaths, Parkinson's, rheumatoid arthritis, cancers, migraines, lupus, CFIDS, GWS ... and various other environmental illnesses, including MCS (Multiple Chemical Sensitivity).

The lack of research data is not the fault of the already chemically injured/sensitive/disabled. We have tried to make our concerns known to the chemical- and mainstream-medical industry for years. If fault is to be found, I suggest it is the fault of the industry ... and even our government, which has not regulated the fragrance industry despite the fact that its products go into our bodies through absorption via skin and eyes, as well as when inhaled. The US Food and Drug Administration has not even carried out its own regulation to require warning labels, despite the fact that that regulation is already on the books. The FDA states:

"Neither cosmetic products nor cosmetic ingredients are reviewed or approved by FDA before they are sold to the public. FDA cannot require companies to do safety testing of their cosmetic products before marketing. If, however, the safety of a cosmetic product has not been substantiated, the product's label must read 'WARNING: The safety of this product has not been determined.'" [Emphasis added.] http://vm.cfsan.fda.gov/~dms/cos-206.html

Our barriers may seem invisible to those not living with chemical injury, but they are nonetheless formidable. Our barriers are as formidable to us as a curb or steps are to someone who must use a wheelchair. Our barriers are also as formidable as a street crossing without sound devices for the people who are blind. Our invisible barriers are also as much a barrier to us as having only a sound-fire alarm, or a hearing-only phone system is to people who are deaf.

The Access Board has heard from activists within the MCS community over the past 15 - 20 years. While the board has determined that it could do nothing to set standards to grant or improve access for the chemically injured/sensitized, millions more have become disabled by the commonly used personal care and household cleaning products and other high-emitting VOC products used in construction and remodeling work of the built environment. These are the very chemical substances that do much to deny access to those living with environmental disabilities.

The mission statement of the Board does not exclude those living with environmental illnesses, yet the past inactions of the board assures the fact that we are denied our right to access.

I fervently hope you will listen with open hearts and minds to the testimony you hear today and tomorrow (March 13 and 14), as well as to the documentation and comments you will receive through your new deadline of May 15, 2000. I trust you can and will address the needs of the chemically/electromagnetic injured as you amend your document, "ADA/ABA Accessibility Guidelines Notice of Proposed Rulemaking."

Many learned individuals will suggest ways the board can set standards for access for the chemmically injured. I respectfully request that you also consider my suggestions:

• set standards for removal and/or non placement of such items as air "fresheners" -- regardless of method of dispersement -- used in transit conveyances and buildings;
  
  
• set standards for low-emitting VOC (volatile organic compounds) products such as paint, wall coverings, carpets, adhesives, upholstery (certainly part of the "built environment of any transit conveyance);
  
  
• set standards for paths of travel, such as doorways free of exhaust, smokers, etc;
  
  
• set standards for shielding wires, cables, energy sources;
  
  
• set standards for outside intercom systems for those already so disabled that none of the above works for them. Etc.

Setting what in essence are air quality standards for the access rights of the chemically injured will have an added benefit -- improved air quality for all. Goodness knows how many individuals will be spared a life with one or more of the environmental illnesses.

I feel it is long past time, for a change in paradigm.

Sincerely,
Barbara Wilkie
(My convention is prevention)
(Barb's email is no longer valid, please contact EHN)