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We lost Sen. Milton Marks in 1998. To read a tribute to him by Barri Boone and Sue Hodges, visit California Disability Alliance at http://disweb.org/cda/memorials/Memory_p1.html#M
C A L I F O R N I A L E G I S L A T U R E
ACCESS FOR PEOPLE WITH
SEPTEMBER 30, 1996
CALIFORNIA DECADE OF DISABLED PERSONS (1983 - 1992) DESIGNATED BY S.C.R. 15 INTRODUCED BY SENATOR MILTON MARKS
SEPTEMBER 30, 1996
The Americans With Disabilities Act (ADA) of 1990 and California state laws guarantee people with disabilities reasonable accommodations for access to public facilities, housing, education, employment and transportation. While it frequently is stated that EI/MCS is not mentioned specifically in the ADA, it is mentioned in the Department of Justice reports and is to be considered on a case by case basis.
In 1991 Senator Milton Marks, Chair of the Senate Judiciary Subcommittee on the Rights of the Disabled, held a hearing on the accessibility of public buildings. Testimony presented included inaccessibility of buildings and services for people who are sensitive to chemicals and other environmental factors.
To explore this further Senator Marks held an Interim Hearing in September 1992 on access for people who have an environmental illness or a chemical sensitivity. The hearing confirmed that access is a major problem. EI/MCS has catastrophic personal, financial and social consequences for the person who has the disability. Further, there is a high cost to the community in billions of dollars lost annually by business and industry due to drops in productivity in the work place (chronic headaches, colds, sinus problems et al); the cost of supporting people with a preventable disability and the loss of the creativity and talents of those who are disabled by a preventable disability.
The hearing also attracted lobbyists, lawyers and public relations firms for the cosmetic, chemical, plastics, building and construction and pesticide industries from all over the country.
Senator Marks was aware that this was not a popular cause among large institutions, chemical, agriculture, building and construction industries and many other businesses because it is not an easy issue to address. However, he felt that it could no longer be ignored. He stated that it is a civil rights issue, a health issue, a business issue and most of all a societal issue..
Multiple Chemical Sensitivity or Environmental Illness remains a controversy within the medical profession. The medical field is divided on the etiology of the illness. Most feel it is a psychological condition and, as such, that it is clinically contraindicated to feed into the person's pathology by accommodating them. Yet thousands of people suffer a wide variety of symptoms which can incapacitate them; prevent their access to public places, government buildings, medical facilities, doctor¼s offices and from holding some jobs because of indoor air pollution or contact with products which cause the symptoms. People with allergies, asthma, immunological, neurological, respiratory and other illnesses also have negative health effects related to poor air quality and chemicals. The issue has received more public notice with the return of thousands of Gulf War Veterans who were exposed to a variety of chemicals, pesticides, inoculations and petroleum fires who now exhibit similar symptoms to those with EI/MCS.
Where there has been documented chemical exposure which can exacerbate a person's reaction to other environmental substances (smoke, cleaning fluids, perfumes, paints, new synthetic products made of plastic which out gas benzene, formaldehyde etc., indoor air pollution et al), there are very few physicians who are willing or know how to treat the condition. Also, there has been very little substantive research to support those physicians who are providing treatment in doing their work. In fact, if they are not careful they may have to fight the Board of Medical Quality Assurance to retain their licenses to practice. Further, there are few laboratories with the capabilities or testing capacity that can determine chemicals that are retained in the system over a long period of time or that these chemicals contribute to sensitivity to multiple chemicals.
The massive, widespread use of chemicals is only about 50 years old. There are more than 100,000 chemicals of various kinds in use with reportedly another 1,000 new chemicals being introduced annually with limited requirements for testing for human toxicity. Physicians and scientists have not yet ascertained or studied the synergistic affect of chemicals thought to be safe at low levels or the cumulative affects as chemicals collect in the human body. Many of the chemicals are fat soluble and thus store in body fat. Federal agencies designed to protect the consumer require long, extensive testing of drugs and control production of food products but allow almost indiscriminate consumer use of products containing chemicals known to be carcinogens, neurotoxins, or to cause respiratory problems or reproductive damage.
EI/MCS already is recognized as a disabling condition by federal agencies: the Environmental Protection Agency (EPA) states that chemical sensitivity is one of the chronic health effects (cancer is the other) caused by chemical exposures in tight buildings; the Department of Housing and Urban Development (HUD) is beginning to provide direction to management and maintenance of low cost housing to assure that the housing is accessible to people with EI/MCS; HUD also has funded a project called Ecology House, specifically designed for people with MCS; the Social Security Administration has a section in its Program Operations Manual System on how to evaluate claims by people disabled by EI/MCS; the National Research Council developed with cooperation of 45 scientists and physicians criteria for research on EI/MCS and the Veterans Administration has an extensive list of symptoms by body systems which are used to evaluate Gulf War Veterans for chemically caused conditions.
It was clear in hearing testimony that EI/MCS was a complex subject which required the participation of all interested parties if the issues were to be addressed as comprehensively as possible. As a result, in April 1993 Senator Marks convened a Blue Ribbon Advisory Panel comprised of people with varying degrees of environmental illness or chemical sensitivity, advocates for people with disabilities, representatives of relevant departments of state government and the private sector related to air quality, food, agriculture, energy, environment, building standards, architecture, medical and health related professionals and representatives of the chemical, pesticide, cosmetics, fragrances, soap and detergent, building and construction industries, architects, building owners and managers; and an Honorary Panel of nationwide leaders interested in EI/MCS.
EI/MCS is an idea whose time has come. However, it is controversial on many fronts. We chose to focus on the rights of access and reasonable accommodations for people who are disabled by environmental or chemical sensitivities.
This is not a new issue. Thirty-five years ago Napa Valley vintners' guidelines for wine tasting fund raisers suggested that guests to the events refrain from using fragrances since the quality of the wine could not be appreciated if the aroma was affected by the scent of perfumes! Rachel Carson's Silent Spring, which warned us of the environmental affects of pesticides, came out about the same time. These early signposts were ignored for years.
Following the publication of Silent Spring public outcry pushed the federal government into passing landmark environmental laws. Quixotically, as current state and federal legislatures are attempting to dismantle those laws, the 1990s version of Silent Spring, was published this year,: Our Stolen Future by Theo Colborn, Dianne Dumanoski and John Peterson Myers. This book revisits the issue of chemicals in the environment, their threat to our ecosystems, animal and human health and potentially our very existence.
In the past twelve years in California the issue of chemical sensitivity has been visited frequently and unsuccessfully. In 1984, AB 3587 was introduced to establish an Advisory Committee on Chemical Hypersensitivity. It also would have provided education and grants to study the issue. In 1985, SB 1177 would have provided $1.6 million to provide a 3 year pilot project for research and education. Neither passed. In December 1989, the Attorney General's Commission on Disability addressed this issue but there was no follow-up.
In 1994 Senator Marks introduced SB 1596, a modest bill which did not get out of the policy committee, but which had far-reaching public educational benefits. This modest bill originally called for the Department of General Services to identify safer, less toxic products for purchase by state government offices; for state departments to identify the numbers of employees who needed accommodations for certain sensitivities and how they were being accommodated; for all public buildings to post signs at main entrances stating when the last pesticide application was made and what it was so sensitive people could determine if the building was safe to enter and it required that public meeting notices request that people attend meetings fragrance free. The bill in its final form only retained the posting of the signs and the request that people attend public meetings fragrance free. While SB 1596 was defeated, it generated interest all over the United States, Canada, Holland and as far away as Australia. Senator Marks and his staff participated in several television and radio documentaries, news and talk shows on the subject of EI/MCS.
From wine tasting guidelines and Rachel Carson's admonitions 35 years ago to the implementation of the Americans with Disabilities Act, it is time to go forward.
The charge to the Advisory Panel was to address access rights and other issues for people who are disabled by chemical sensitivity or environmental illness. The Advisory Panel was asked to address a series of questions:
Senator Marks made his expectations clear in his charge to the Advisory Panel, "My expectations for you as an Advisory Panel are multifaceted. First, this is a working group, not window dressing. Second, I am looking for outcomes: recommendations for reasonable accommodations for access; for possible resolutions and legislation; policy changes; local ordinances; modifications of state building codes and other regulations which govern the operations of various departments and anything else that you feel will be important to getting the issue addressed. Third, I really want to see the broad and often disparate interests come together with some consensus around the basic issues. I know that this is not an easy charge. Look at it from the viewpoint of the old Chinese proverb, åA journey of a 1000 miles begins with the first step¼."
This ambitious charge was not reached. Panelists were encouraged to be creative and to consider needed changes with an eye to developing new products and new markets. At the time it did not appear that this plea for creativity was heard. However, more and more safer or „green¾ products are appearing.
After the first meeting Panel members met in Task Forces: EI Task Force - people with the disability; Industry Task Force - representatives of chemical, soap and detergent, cosmetics, fragrances and toiletries, building owners and managers and architects; Building Standards, Construction and Maintenance Task Force - representatives of state regulatory agencies, building owners and managers and architects; Medical/Health Task Force - representatives of state regulatory agencies, physicians and other related health professionals.
The EI Task Force prepared a comprehensive and sweeping paper which covered barriers to access, recommended solutions and raised questions in areas which were unclear. Each of the other Task Forces reviewed that document and made recommendations. There were many areas where the Task Forces reached consensus and others where there were disagreements. Some of the questions the Task Forces addressed were: 1. What is the problem? What has been done? What are the results? What further measures are needed? What policies are already in place in various departments?
This paper, based on the Task Force meetings, puts forth the recommendations for action and proposed solutions for access issues. The intent was to reach a consensus. It was not possible for each of the Task Forces to reach consensus on each of the recommendations, nor was it possible for the Advisory Panel as a whole to reach consensus. Therefore, this paper identifies barriers to access for people with EI/MCS and which may affect those with allergies, asthma, emphysema, immunological and neurological conditions, other respiratory problems and other conditions. The some of the recommendations to eliminate those barriers have not been agreed to by the Industry, Building Standards or Medical Task Forces.
The Advisory Panel was sent a first draft of this document. At the February 28, 1994 meeting of the Advisory Panel, we were unable to reach consensus on many of the recommendations for providing accommodations for access. The Panel recommended a restructuring of the report which has been done.
DISCLAIMER: WHILE THE MEMBERS OF THE ADVISORY PANEL HAVE HAD VARYING DEGREES OF DIRECT OR TANGENTIAL PARTICIPATION IN THE PANEL OR TASK FORCE PROCESS AND MEETINGS, NONE OF THEM HAS SEEN OR ENDORSED THIS REPORT IN ITS FINAL FORM.
The report of the EI/MCS Task Force addressed barriers to access to public buildings and institutions and their programs, transportation, housing and employment. It offered suggested solutions to barriers to access and raised questions around issues that did not clearly fit into a category or did not have a readily apparent solution.
The same barriers to access for the person with EI/MCS exist in a variety of institutions. In addition, some institutions have other conditions which are detrimental to the person with EI/MCS. Often the person does not have a choice or option and must endure the setting and conditions. People have a right to a basically healthy environment.
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