March 15, 2000

Dear Access Board Members:

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

Following is an article that was first printed in July 1993. The story actually took place seven years ago today! March 15.

I've added additional comments following Access in the Works ...

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Access in the Works (kind of...):
EHN PROTESTS ACCESS BOARD STALEMATE ON MCS

By Susan Molloy

The San Francisco Hilton was the inaccessible site, March 15, 1993 of the federal Architectural and Transportation Barriers Compliance Board's final hearing on architecture and the Americans with Disabilities Act.

In support of testimony by dozens of people with EI/MCS, every other principled disability group present expressed dismay and outrage that EI/MCS access to hospitals, schools, housing, and public facilities was omitted from ATBCB's final regulations despite the pounds of invited documentation and testimony we submitted during the past two years.

In a meeting in EHN's "Hospitality Suite" (the now legendary Hilton Room 1073, for which we paid $75 for respite from ATBCB's hearing room) following the official hearing, members of the Access Board and their lawyer made such points, to a room packed full of thoroughly sick and exhausted E.I.s, as:

• "there isn't enough conclusive scientific data for us to help you;"

• "our staff is too small to help you;"

• "you people don't all react to the same thing so we can't help you;"

• "we have personally had a conversation on the phone with Mary Lamielle;"

• "the jury is still out on this one so we can't help you;" etc.

Kathleen Parker is Board Chair of the ATBCB. Larry Roffee is ATBCB's Executive Director. The ATBCB staff person assigned to MCS access, as of March 16, is Paul Beatty, 800-872-2253, ext. 19. Or call David Capozzi, manager of ATBCB's Office of Technical Information Services, (202) 272-5434, ext. 23. ATBCB's address is 1331 "F" St., NW, Suite 1000, Washington, DC 20004-1111.

See if you can determine what it will take to get some help from this agency.

The article, above, can be found reprinted on page 254 of The BEST of the Reactor 1985 - 1995, edited by Susan Molloy. See http://ehnca.org/www/books/bookordr.htm

We are now nearly finished with the first quarter of the year 2000 ... and the saga continues.

Every excuse given to the EI/MCS community above, had been given directly to me by my former employer, EXCEPT "We have personally had a conversation on the phone with Mary Lamielle." While I didn't hear that particular one, I heard many more; all along the same lines.

Had the Access Board acted in 1993 to include the chemically injured, I could still be working.

Your mission states you serve "... the nation as the only independent federal agency whose primary mission is accessibility for people with disabilities." Reality has your statement read thusly: "The Board, created in 1973, has served the nation as the only independent federal agency whose primary mission is accessibility for people with disabilities -- EXCEPT FOR THE CHEMICALLY INJURED." [Note: the AB's website was changed some time after this note was written. One cannot get to the old edition of the mission statement, however one can link out to About the Board at http://www.access-board.gov/indexes/aboutindex.htm -- barb 2/23/01]

My workplace ostracized me -- call it the "ZONE" system if you care to, I think of it as gulag -- because they said they "couldn't do anything for" me as I was a "loose cannon" and later, because I was "all over the alphabet."

Truth? They didn't really try! I felt as though I accommodated my employer.

Management refused to accept suggestions from JAN (Job Accommodation Network) and they did not even deign to follow guidelines from our late state senator Milton Marks -- Access for People With EI/MCS and Other Related Conditions, booklet by the Senate Subcommittee on the Rights of teh Disabed, Sen. Milton Marks,Chair, and Joan Ripple, Committee Consultant, published by Calif. State Senate (in three parts) http://ehnca.org/www/books/eimcsf1.htm For more information see EHN's "Access" at http://ehnca.org/www/ehnhompg/takheart.htm#Access.

Why? Because it is not written by the Access Board that Indoor Air Quality measures measure up to access for the chemically/electromagnetically injured/disabled.

Management, including human resources and a lawyer, wanted to wear their signature scents. Period. Management wanted to spray pesticdes (sometimes while people were working to save money), and they refused to even entertain the idea of IPM (Integrated Pest Management) practices. They painted every few months -- at least after others complained about being made ill, they went to more tolerable paint for the offices and hallways, but they continue to use high-emitting VOC (volatile organic compound) paint for the restrooms. They wanted to do roofing sealant work while staff worked -- they did so twice within one week in Februay 1997 (they laid claim to it being "just a little mistake" by the roofers and I was accused by the former Deputy Executive Director of having "gone ballistic." Truth? I didn't. I should have!). My complaints about that exposure -- which, among other nasties, was a reproductive toxin according to its MSDS (material safety data sheet) -- seemed to have led to their stepped- up efforts to get rid of me. That entire spring I was in and out of more management-called meetings than one could count. Ironically I was accused of "taking up so much [of their] valuable time," because, as I was told time and again, I "was the only one."

Horsefeathers!

A good 12% of the workforce in the building, by my count at that time, had malignant tumors -- there may have been more as some folks tried to keep cancer quiet and I didn't know all the people in the other agencies. Others had benign tumors -- I developed a fast-growing one after having been moved to gulag. Other staff, as well as I, suffered chronic asthma, sinusitis, bronchitis, migraines and other debilitating headaches. And still others had recurrent pneumonia ... sometimes double pneumonia. And, of course, there were the seemingly endless cases of "colds" and "flus" -- which I didn't tend to get because I protected myself as much as possible from the chemicals that cause cold- and flu-like symptoms.

I was the only one diagnosed with Multiple Chemical Sensitivity. I was NOT the only one with an Environmental Illness!

I had tried to inform managment that the office to which they planned to "unilaterally move" (their phrase) me was in an area even more toxic than the space on the third floor where the main offices were. And if they couldn't control the use of fragrances in the main office, there was even less chance on the lobby floor. That logic was lost on them . . . or it was their thinking that I'd finally give up trying to remain gainfully employed while being able to breathe cleaner air. I didn't know just how toxic the office could be that I was railroaded to, until after I was in there. I was to "try" it.

Then they wouldn't let me back out ... until they finally came up with a brilliant idea half a year of sickness and disability later. They proposed to move me back to the third floor to "a wonderful office," which was an unvented storage closet, next door to a much-used copier that outgassed into an open grid panel in a suspended ceiling. I was then put in the untenable position of having to fight to stay in the toxic office to which I had been railroaded as that seemed the lesser of two major evils given me as work options. The third was the street.

The thing about a "zone" -- or an office to which an employee can be ostracized -- unless the air system is separate and pure in and of itself, the zone WILL share the air of the main building. What is foul on the third floor will be foul on the first.

And in my case, because the office was right at the sidewalk on a busy street in Oakland, the first floor office had the pleasure of sucking in diesel exhaust on a daily basis through its "sealed" windows ... and however else. Those "sealed" windows leaked rain, enough that an office mate had cups on his windowsill to collect the incoming rain. Rest assured, they also leaked diesel exhaust, and cigarette smoke and fragrances from folks who took their smoke break right outside my windows. That office space also was in an area of a conference room that was frequented by fragranced individuals. There was no safe path of travel to the restroom that served everyone off the streets, and members of other agencies, and which was always painted with high-emitting VOC paints and cleaned with major outgassing compounds. It was on the same floor with a cafeteria that was often sprayed with pesticides for gnats, and that also had gas leaks and used sterno from time to time that polluted the air in "gulag." An added treat was the daily shower of fiberglass particles that rained down on my entire workarea -- they look like little V-shaped fibers.

For my former employer to claim that they were moving me to a "safe office" was ludicrous on the surface. It proved far worse in reality, and it did much to heighten my disabilities.

It was a horrible experience -- from June 1997 until I retired Oct. 19, 1998 -- but I was determined that as there were many millions of people down through history experiencing far worse conditions of confinement and harassment than I, and I was not going to let them get me down. As you may guess by now, I am a battler.

I continued working to the best of my ability -- despite asthma, migraines, tinnitus and open sores ("non healing chemical wounds") from the pesticides sprayed often in the cafeteria on that floor, etc., until my body said, ENOUGH IS ENOUGH! and developed a tumor (fortunately for me, it was benign) in that toxic office.

I finally saw that tumor as "the handwriting on the wall" to get me to decide it was time to kiss off the job that I had loved -- and was considered exceptionally good at -- and I retired. I will always feel I was forced to retire, it just took me longer to leave than they anticipated when they railroaded their employee disabled by their practices and policies -- or lack thereof. (My ego has been stroked several times since in that I've been asked to consider coming back part time. Now that I've been out, I told them no way as I'm far too busy in projects to make sure that no one else has to go through what mainly management and a few co-workers put me through. Not to mention my ultimate goal of helping clear the air so others do not suffer MCS. It is a largely preventable disability. I strongly feel, that once we learn of MCS and its causes, we all have an obligation to do our best to limit the causes so we can slow the burgeoning numbers of folks who have to live with this disability.)

Now, while the recently proffered "zone" suggestion may be a heck of an idea in certain situations -- say, if we are talking about a healthcare facility or a government agency that serves the public, and especially seniors and people with disabilities -- and IF the air exchange is separate from the main contaminated building, maybe it would be a workable concept. BUT, in my opinion, it is not workable for transportation vehicles and it is not workable for restaurants, motels/hotels, employers on the whole, educational systems from kindergarten through college. Etc. For example, think of requesting a "Green Room" (smoke-free) in a major hotel. Most people sensitive to smoke, feel as though they have slept in a smoker's room. In effect they did, as the air is a shared-air system.

Perhaps the Board has not thought of it before, but the mere fact that buildings have HVAC (heating, ventilating and air conditioning) systems -- and transit vehicles have shared-air from front to back -- Indoor Air Quality (IAQ) has to be a part of the mandated purview of the Access Board for the built environment, be that built environment a building or a conveyance.

I should think that if carpets can be regulated for wheelchair access, they and their adhesives certainly can be regulated for access for the chemically injured -- and everyone else will be better off too!

And, by extension, specifying safer paints, wallcoverings, etc. cannot be that much of a stretch from regulating the depth and texture of carpets. Improve IAQ for all and you'll make great strides in making most buildings and conveyances accessible for a great many chemically injured/sensitive. You'll keep others from becoming sensitized ... and disabled.

Fragrances are superfluous toxic chemicals that leave the user, or the device, or the cleaning substance, to pollute the air for all. There is enough data on the fact that fragrances are harmful to health1, that they are toxic chemical formulations2, which are produced by an unregulated industry 3 . There should be no problem in stating that fragrance emission, pesticide and/or disinfectant devices 4 are not to be part of any built environment -- including transit vehicles! Along with that should come education so that people realize that they are not to use any toxic synthetic fragrance chemicals in public places.5

Additionally, please consider:

• Electric cables and wires can be shielded. That could be part of guidelines for all.

• A zone room, with separate air supply, for the most severely chemically disabled seeking medical care or government services.

• An intercom system -- see testimony from Susan Molloy.

The thing to remember about the chemically injured ... we are the canaries. The difference between modern times and the coal miners of yore is the coal miners paid close attention to their canaries.

I suggest it is time to listen to our warbles and act upon them ... while there is still time for you to spare your own health and the health of others not yet suffering one of the many types of environmental illness, including Parkinson's disease and the various cancers.

I look forward to seeing the Access Board's 2000 mission statement read: "The Board, created in 1973, has served the nation as the only independent federal agency whose primary mission is accessibility for people with disabilities -- INCLUDING THE CHEMICALLY INJURED."

Sincerely,

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

1. See list of august organizatons, with links, which acknowledge that fragrances trigger a variety of serious health problems
http://ehnca.org/www/ehnlinx/a.htm#AVOID

2. See Analysis http://ehnca.org/www/FDApetition/analysis.htm

3. FDA http://vm.cfsan.fda.gov/~dms/cos-206.html

4. Air "Fresheners" http://ehnca.org/www/ehnlinx/a.htm#Fresheners

5. Sierra Club's Resolution against "Excessive Use of Fragrance Products in Public Places"
http://tamalpais.sierraclub.org/chapters/sanfranciscobay/policy/december1998.htm