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Exclude MCS?
A Mockery, the Board Makes


Subj: Public Comment Docket No. 99-1

Date: 5/15/00

To: docket@access-board.gov

May 15, 2000

Architectural and Transportation Barriers Compliance Board
Office of Technical and Information Services
1331 F Street, NW, Suite 1000
Washington, DC 20004-1111

Re: 36 CFR Parts 1190 and 1191
Americans with Disabilities Act (ADA) and Architectural Barriers Act (ABA) Accessibility Guidelines, Proposed Rule
Docket No. 99-1, RIN 3014-AA20

Members of the Access Board:

I am writing for a second time to comment on your proposed guidelines for implementing the ADA. I refer you to my written and oral testimony of March 13, 2000 in which I stressed that people disabled by multiple chemical sensitivities (MCS) are covered under the ADA and therefore should be included in its implementation guidelines. My opinion on this has not changed and has only become stronger as I have learned more about the frustrating and futile experiences of the MCS community in trying to work with the Access Board for over a decade. The time is far overdue for the Access Board to acknowledge MCS and take a proactive role in creating accessibility guidelines for people disabled by it.

In trying to understand the Board's resistance to doing the right and legal thing with respect to addressing the needs of people with MCS (including those with electromagnetic sensitivities), I have thought about what attitudinal barriers may be involved. Below is a list of attitudes that I suspect are impeding the Board in taking appropriate action regarding MCS, along with some suggested remedies that might help remove those barriers.

ATTITUDINAL BARRIERS

  1. MCS is too complicated to make rules regarding access.

    Suggested remedy: Educate the Board on why it is not acceptable to take a "contempt prior to investigation" attitude with respect to researching and developing access guidelines for MCS. Not clearly knowing in advance what the final wording of the rules would be should not be used as an excuse to avoid pursuing them, especially since the basic ideas are well-defined and copious amounts of information on chemical and electromagnetic barriers and suggested remedies have already been submitted to the Board. The Board now needs to obtain adequate technical assistance to research and develop guidelines for MCS access by hiring consultants and networking with other relevant federal agencies such as the U.S. EPA, OSHA, Post Office, and General Services Departments which have already done work in the area of indoor air quality, less-toxic building methods, and less-toxic pest management. The MCS community should be included throughout the research and development process.

  2. The Administrative Procedures Act prohibits the Board from amending the proposed rule.

    Suggested remedy: Remind the Board that according to the January/February 2000 Access Currents, the "Board will revise the rule as necessary according to the comments received" after the comment period closes. Refusing to amend the rule is inconsistent with this promise and the law. Review the Administrative Procedures Act and options available to the Board on how to include MCS in the proposed rules. This includes withdrawing the proposal until MCS is included, re-releasing the proposed rule for a second round of public comment after MCS is added, and including MCS in currently proposed rule, acknowledging that MCS is covered under the ADA and announcing that a separate proposed rule will be released regarding MCS in the future (and then doing so).

  3. Including MCS threatens the Americans with Disabilities Act.

    Suggested remedy: Educate the Board on why not including MCS is a greater threat to the ADA since it promotes the very discrimination against disabled people that the ADA is intended to prohibit! Excluding MCS makes a mockery of the whole concept of civil rights for the disabled.

  4. The Access Board will lose credibility if it includes MCS in the proposed rules.

    Suggested remedy: As above, the Board needs to realize it will lose more credibility if it fails to protect the very constituents it is charged with protecting. Educate the Board on the activities of the New Mexico Governor's Committee on Concerns of the Handicapped (GCCH) which even as a small agency that the governor has repeatedly threatened to disband and in full recognition of the political and economic opposition to this disability, has recognized that chemically sensitive people are grossly maltreated and discriminated against. Because of this, the GCCH has funded MCS conferences and distribution of educational material, supported legislative efforts, and sent letters supporting individuals with MCS. Director Judy Myers, who has a physical disability and who was not familiar with chemical sensitivity issues until a few years ago, has stuck her neck out in our behalf because she was so appalled at how people with MCS are treated. She said the hostility reminded her of when she witnessed building contractors spit on women using wheelchairs because they were touring the state talking about wheelchair access.

  5. People with MCS are not really disabled.

    Suggested remedy: Educate all Board members about MCS, conduct sensitivity training, spend a day with people with MCS to see just how many major life activities are impaired and now inaccessible the world is when one is chemically and/or electromagnetically sensitive.

  6. There is too much industry opposition to acknowledge MCS.

    Suggested remedy: Remind the Board that industry has opposed all efforts to increase disability access and this has not stopped the disability community in the past nor should it stop it from addressing MCS access issues now.

  7. There is insufficient research into the impacts a rule would have on MCS access.

    Suggested remedy: Review the literature on MCS before concluding that increased research is necessary. There are several studies that have determined the prevalence of people reporting chemical sensitivities to be 16% or more of the general population. Other studies list common chemical barriers. Clearly any reduction in these barriers would increase access for a significant portion of the population. Remind the Board that outcomes research in many areas of disability access is far from complete and this has not stopped them from developing access guidelines to help people with other disabilities.

NEGATIVE EFFECTS OF PROPOSED RULE

In addition to the glaring omission of MCS from the proposed rule, we in the MCS community are quite concerned about other deleterious effects the rule will have on us. Areas of concern include the following:

  • Defining "accessible" and "accessible route" as only those sites, buildings, facilities, and routes which comply with this rule, since it totally ignores chemical and electromagnetic barriers,

  • Defining "accessible dwelling units" for residential facilities, since it also fails to take into account chemical and electromagnetic barriers,

  • Excluding normal maintenance from the definition of "alterations," since re-roofing, painting, wallpapering, and changes to electrical systems contribute to access barriers for chemically and electromagnetically sensitive people.

These definitions need to be re-written so that they do not imply that chemical and electromagnetic barriers are nonexistent and not protected under the ADA. (See Susan Molloy's letter to the Access Board dated May 12, 2000 for specific references and more details on these and other areas of concern).

CONCLUSIONS

I urge the Board to heed the recommendation of my Congressman, Tom Udall, who in his letter to the Board dated April 18, 2000, stated that it was important for the Board to include guidelines for accommodating individuals affected with MCS in the proposed rule "with full consideration allowable by law".

It is, therefore, imperative that the Board take the following immediate actions:

  • HALT THE RULEMAKING PROCESS UNTIL MCS IS FULLY INCLUDED.

  • ACKNOWLEDGE MCS IN THE RULE. Suggested language: "Those disabled with multiple chemical sensitivities (MCS) are covered under the Americans with Disabilities Act, although specific guidelines to address the access needs of those with MCS have not yet been promulgated. The Access Board supports, in principle if not yet in detail, efforts to increase access for people with MCS and related disabilities."

  • ELIMINATE ANY POSSIBLE NEGATIVE IMPACT OF THE RULE by rewriting the definitions mentioned above or any other language that may have deleterious effects on chemically and electromagnetically sensitive people.

The MCS community requests the Access Board take the above steps to include MCS in the proposed rule as soon as possible. Although we have historically been very patient in waiting for the Board to take action on our behalf, we can no longer sit by and accept its inactivity. If the public comment process is unsuccessful, we intend to pursue all legal avenues to obtain our civil rights.

Sincerely,

Ann McCampbell, MD
Chair, MCS Task Force of NM

cc: Congressman Tom Udall
Senator Jeff Bingaman
Senator Pete Domenici
Judy Myers, Director, NM Gov's Committee on Concerns of the Handicapped
Julie Ballinger, Director, Independent Living Resource Center, Albuquerque
Ron Garcia, Director, New Vistas Independent Living Center, Santa Fe
Dorothy Powers, Director, So. NM Center for Independent Living, Las Cruces
Sherry Watson, Director, San Juan Center for Independence, Aztec
Barbara Thomson, Director, ILRC/Roswell

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2/1/2000

The Environmental Health Network (EHN) [of California] is a 501 (c) (3) non profit agency and offers support and information for the chemically injured. HomePage is http://ehnca.org/ehnindex.htm