Melissa
Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated
January 1, 2014
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Melissa
Kaplan's |
A Question of Acces...
©2000 Melissa Kaplan
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Tuesday, September 12, I went to the Northwest branch of the Sonoma County
Public Library, knowing that it was reopened again after being "refurbished".
It didn't occur to me, until after I was inside and my skin and respiratory
tract were assailed by the fumes from the new carpeting, that "refurbished"
meant new carpeting. I didn't smell paint, just carpet. The room was very
stuffy, as if the ventilation system wasn't on.
I asked the reference librarian if she could have someone put up a sign saying "new carpeting" so that others like me could decide whether they wanted to risk it or not. I left her my card with my web address on it, saying that I had a lot of information on MCS at my CND site. She said she would have to refer it to her manager who was in charge of signage. I was in there barely 10 minutes, and by the time I got home (I live about 2 miles away min away), my nose was clogged with blood clots and I ended up passed out for the next 9 hours or so, a typical response to various chemical fumes. I went on Wednesday, 9/13, to drop a book off and saw no sign; I left it in the night deposit box, and left. When I got home, I called the branch manager. She said that she didn't see any reason to put up a sign (no one else complained, and they did follow EPA recommendations), but she had referred it to her supervisor who had stopped in that day. I called and left a message for her supervisor, Virginia McClaren. She called me back on Thursday, late afternoon. Basically, their position is: No. The stated and implied response was: No one else complained, including employees with asthma and allergies, so I really can't be that sick (and if I really am, how do I manage to go into doctors offices and things), and besides, no one reads signs anyway. I stressed the complexity of our reactions, how they were not like asthma or allergies, and that I didn't really want to have to escalate this into an access issue. I heard nothing more until I received a note from one of the individuals I had emailed about this situation that when she called Virginia, Virginia told her that there was a sign up. I went by on Tuesday, 9/19, to drop off a book, and saw that there was, indeed a sign. While not referring to those with chemical sensitivities, it was a nice, cheery sign welcoming library patrons back to the re-opened library with its new carpet, ceiling tiles, and carrels. I decided that, despite the fact no one from the library called to say there was now a sign, that I would write a thank-you letter. As I got into it, however, I decided it really should be escalated into an issue. Herewith is my letter to the library. September 21, 2000 Virginia McClaren Dear Virginia, Thank you for putting a sign up at the Northwest Branch of the library. I had the opportunity to see it the other day when I went to return some books - using the after-hours drop box, rather than going inside, as I am still suffering the lingering effects of my brief exposure to the library over a week ago. I was going to make this a short thank-you letter, but as I went over my notes and discussions with other members of the community, the enormity of the lack of understanding has prompted me to do take this opportunity to clarify and discuss a few things. 1. Multiple chemical sensitivity (MCS) is neither asthma nor "allergies" as people typically understand them. Unlike these two conditions, there is no effective treatment. While asthma attacks and allergic reactions can be halted by inhaled or oral medications, MCS cannot be so easily mitigated: once the exposure has occurred, the reaction must run its course. While expensive intravenous drugs, steroids, and anti-seizure medication may help some individuals, these drugs are generally not at hand unless the person is rushed to the emergency room. For those who suffer "lesser" reactions, it may take hours, days, or weeks to recover from the exposure. In my case, I had a bloody nose by the time I got home (less than 15 minutes after walking into the library) and suffered a collapsed from severe fatigue and weakness lasting almost 9 hours. I continued to experience hypersensitivity, nasal bleeding, impaired respiratory function, and extreme, debilitating fatigue for well over a week. For exposure to cats, I can take a pill. For new carpeting or paint, there is nothing like that that will get me back to functioning at my normal level in a relatively short period of time. Thus, the difference between asthma and common allergies is an important distinction to keep in mind when it comes to MCS. 2. People with MCS have been ostracized by their families, friends, the community, and, too often, the medical profession, despite MCS and environmental illness (EI) having been documented in the medical literature as being a physiological - rather than psychosomatic - disorder as early as 1952. Because their reactions to exposures are often so extreme and seemingly bizarre - and not experienced by unaffected individuals - most people with MCS just quietly leave and say nothing rather than risk being further insulted and ostracized, exactly the feeling I got when talking to you and Beverly at the Northwest branch. Unlike most others with this disease, however, I tend to speak up. 3. Corporations and the media have long known that the letters and phone calls they get represent only a fraction of all those individuals who have the same or similar opinions of those who actually call or write. At one time, the ratio was estimated to be 1:500, with every single communication representing 500 people with the same or similar opinion. Just because you don't get a lot of complaints about a problem, from the public or your own employees, does not negate the fact that a problem exists. In fact, since I spoke with you, I have heard from several people who had reactions or, knowing that there was new carpeting, skipped going to library all together. (The Northwest and Central branches may seem together to you and others who are healthy, but they are very far apart for those who are not well and for whom every minute spent in the car and in traffic adds an additional burden on already over-loaded immune systems). I have also heard from healthy individuals who got sick when they were in Northwest branch and some other county buildings shortly after they were painted and carpeted who did not at the time they were there attribute their physical reactions to the fumes. This is one of the reasons why MCS is creating a significant health burden and increasing absenteeism without being identified as such: most healthy people simply do not realize that the man-made environment is causing toxic reactions in them. 4. Your new carpeting may have met EPA guidelines, but those guidelines are for people who aren't already suffering from MCS; instead, they are an attempt to mitigate the impact of the renovation and, hopefully, reduce the number of future victims. Unfortunately, these guidelines often do not go far enough, or they are observed more in the breech than in fact. The EPA itself recommends that even low-emission carpeting be rolled out and aired for several days before installation, and that ventilation be done around the clock for several days before the site is occupied again. The library may have had low-emission carpeting installed, but if the installers did not unroll and air it out for several days before the actual installation, and the building's ventilation system was turned off during hours workers were not there or has insufficient fresh air intake, the fumes will not dissipate adequately. That would account for the fact that I and those who have not spoken up were immediately overcome by the fumes and stuffiness in the branch, and other suffered a generalized feeling of "unwellness" after spending some time in there. 5. When I spoke to you, you asked about how I dealt with going to medical offices, your tone sounding as if fumes and fragrances couldn't really bother me as much as I said they did. To reiterate my response, besides my physicians who, being aware of the effects of chemicals and fragrances on their patients, I have ventured into very few medical offices because of the fragrance/chemical problem. I did once have to go into the 1111 Mendocino medical building for x-rays. Between the recent chlorination of the two-story indoor waterfall and pool, the painting of an office suite on the floor the radiologist was on, and the perfume worn by the x-ray technician, I was reeling from a migraine-like headache which lasted 48 hours, wheezing, and ended up collapsed for a day by the time I left 25 minutes later. The last time I saw my gynecologist, I lost my voice and got a ferocious headache within seconds of walking in the door because of a patient in the waiting room who was wearing perfume and hairspray. I gasped to the receptionist that I would wait in the courtyard. The doctor very nicely met me out there; needless to say, it was fortunate for all of us that, on that particular day, my visit did not include a pelvic exam. 6. Finally, the YWCA put up signs two weeks before they repainted and treated their pool with chemical notifying their members that this work was going to be done, and left the signs up afterwards as a caution for those who are chemically sensitive. They did not need to be urged or argued into doing so. Why is it that city, county, and medical facilities cannot do the same? Despite the paltry library holdings, there is an increasing body of accessible literature on MCS and the physical - and societal - ramifications of the disease. Some of them available locally or though online resources include:
I strongly suggest that whomever is in charge of facility management, public relations, and human resources read these and related materials. Additional information on accommodations for fragrance sensitivities and multiple chemical sensitivity can be found at the University of West Virginia's Job Accommodation Network (JAN) at http://janweb.icdi.wvu.edu/. In case you do not get around to reading it, I thought I would share this quote from the Business Week article:
What this means is that In Sonoma County, based on the 1998 population figures and its estimated annual increase, there are presently 22,935-45,870 people who suffer from MCS. While I may have been the only one to voice the request for a sign, I am not the only one whose access and health are affected by the lack of signage - and understanding - that is prevalent in the public library system and in this county. The fact that there are only two books in the entire system on this problem is indicative on how little recognition it receives here. Just in case my complaint still is difficult to understand, let me try to illustrate the inappropriateness of the reaction I received to my request and statement of concerns: Telling a person with MCS that there is only a little fragrance or very low emissions is like telling someone in a wheel chair that "there are only a few steps." Any barrier that prevents access - or precludes the ability to choose to access - is a barrier. All I asked for was a temporary sign on one branch library door to alert those with MCS that a potential barrier lay inside the Northwest branch. Perhaps the next time someone asks they won't have to go up the food chain to get it done. Melissa Kaplan cc: Paul
L. Kelley, County Supervisor
"In providing program access city governments are not required to take any action that would result in a fundamental alteration to the nature of the service, program, or activity in question or that would result in undue financial and administrative burdens." The ADA and City Governments: Common Problems A simple sign is hardly a "fundamental alteration" or "undue" burden... Some who have read my letter have asked if I ever received a respone from the library or from any of those in the county or city. The answer is: no.
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