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Including People Who Have Environmental Sensitivities in Emergency and Disaster Preparedness
On March 18, 2021, I had the honor of speaking at a virtual webinar hosted by the Arizona Statewide Independent Living Council (AZILC). The topic was Including People Who Have Environmental Sensitivities in Emergency and Disaster Preparedness. The video recording of my presentation can be found on my Interviews/Media page. Links to the Arizona Partners in Pandemic web page as well presentations by the other speakers, Cyndi Norwitz and Susan Molloy, can also be found there.
Covid-19 and Chemical Sensitivities
Oh my! Who could have imagined we would be living through a pandemic that has virtually brought the world to a standstill. While everyone’s lives have been severely impacted by Covid-19, for those with chemical sensitivities, dealing with the virus, and precautions taken to reduce its spread, present some unique challenges, and surprisingly, some benefits.
The Covid-19 situation constitutes a triple threat:
- Health – Becoming ill from the virus
- Supply Chain – Disruptions in manufacturing and distribution of products, depletion of stock due to increased buying
- Economic – Increased unemployment, plummeting stock market, potential recession
HEALTH
Although there is a huge amount of conflicting and changing information about Covid-19, one consistent message is that prevention is the best strategy. This may be one area where the chemically sensitive have an advantage, since we already know a lot about masks and staying away from other people! We are also quite experienced in air hugs, paying attention to what touched what, decontamination, putting potentially harmful items outside or in isolation rooms, and spending time alone.
But there are down sides to being chemically sensitive. If we contract the virus, many of us could not tolerate a hospital environment or medications and life-saving procedures being used to treat severely ill patients with Covid-19. Nor are we likely to be able to tolerate a vaccine for the virus. Some of us, on the other hand, may already have supplemental oxygen at home which could be used to reduce shortness of breath associated with Covid infection.
Another problem for chemically sensitive individuals is the increased use of sanitizers and disinfectants. Many of us do not tolerate bleach, rubbing alcohol, phenol (Lysol), and other chemicals being used to disinfect surfaces and hands. Some of these products also contain fragrance which only adds to their toxicity.
You might be wondering if chemically sensitive people are more susceptible to Covid-19 than healthy people. In my experience, there is a wide range of susceptibility to viral respiratory infections among chemically sensitive individuals. Some seem to come down with one bug after another, while others are only rarely affected. I think the jury is still out on who is most susceptible to becoming infected with Covid-19, both for the general public as well as those with chemical sensitivities.
Now the good news. Air quality in many places has improved dramatically due to reduced industrial emissions and vehicle exhaust, among other things. In northern NM, the Forest Service has even suspended prescribed burns. What a welcome relief to be able to breathe outdoors with less chance of getting sick from air pollutants.
But for those who are electromagnetically hypersensitive (EHS), the situation is not good. The new reliance on electronic devices to connect with others is increasing electropollution significantly. Those sheltering at home are making more calls on their cell phones and spending more time on the internet, usually through wireless connections. And there are already calls for expediting, rather than stalling, the installation of hazardous 5G networks to increase the speed and capacity of phone and internet connections.
SUPPLY CHAIN
Those with chemical sensitivities are often dependent on a narrow range of foods, water, supplements, medicines, and other products that we tolerate. If these become unavailable, we may be in real trouble, because there are no tolerated substitutes.
The Covid-19 situation has shut down some manufacturing, much transportation, and sent people to nervously stock up on toilet paper and other items. As a result, many foods and personal products like soap, shampoo, and laundry detergent may not be available.
It is indeed shocking to go into stores and see rows of empty shelves that had been teeming with products only weeks ago. Not being able to find needed products is stressful for everyone, but the impact on chemically sensitive people is especially great.
The only silver lining for chemically sensitive people is that we frequently stock up on precious tolerated items, like shampoo, dental floss, supplements, and other things, to make sure we have them in case they become temporarily or permanently unavailable.
ECONOMIC
Last, but not least, the Covid-19 situation is having a huge economic impact. Unemployment rates have skyrocketed and stocks have plummeted. Even though many chemically people do not work or own stocks, the Covid-19 virus can still have a financial impact.
Some chemically sensitive people are financially dependent on their employed spouses who may have lost their jobs. Others may have a special needs trust invested in stocks that lost money. Those who do work may see their business drop off substantially or be shut down.
For now, those on fixed incomes are probably financially secure, but if there is a serious economic recession, no one knows if there will be cuts in Social Security and other benefit programs.
The bottom line is that this is an extremely difficult and unprecedented time for all of us. Information about the Covid virus and recommendations for how to deal with it change daily. For those with chemical sensitivities, whose lives are often hanging by a thread during the best of times, the Covid-19 crisis poses especially difficult challenges and adds to the already daunting task of trying to stay safe.
Relating to Others When You Are Chemically Sensitive
I am pleased to announce that I am adding a new article to my web site. Years ago, I wrote a booklet entitled Relating to Others When You Are Chemically Sensitive, but I never published it. Recently, I updated it and today am making it available on my website under Writings and Publications. Relating to Others When You Are Chemically Sensitive
Susan Molloy’s Presentation to Access Board 5/23/18
Susan Molloy’s Presentation to U.S. Access Board at Phoenix Meeting on 5/23/18
U.S. Access Board
1331 “F” Street NW
Washington, DC 20004
Dear President Robertson, Board Members, and Executive Director Mr. Capozzi:
First of all, we are honored by your visit to ABILITY360, our Phoenix Disability Empowerment Center. Thank you, and ABILITY360 Executive Director Phil Pangrazzio, for all your efforts organizing this meeting and for hearing our presentations. Please extend our appreciation to your staff members as well for their hard work.
We trust that you are as encouraged as we, by which I mean people facing environmental barriers to public spaces and facilities, by the Indoor Environmental Quality (“IEQ”) Report of 2005. It was published by the National Institute of Building Sciences, sponsored by the U.S. Access Board, and coordinated by the Access Board’s then Chief Counsel Jim Raggio.
Through this project, we developed concepts and language through which to make the Access Board’s work more comprehensive.
While implementation of the measures we suggest in that document, and in subsequent communications, may not all be immediately achievable, it is our responsibility to see that inadvertent barriers to our access do not go unnoticed and that we assist the Board in drawing up applicable specifications and policies in accordance with the IEQ Final Report.
We are at your service to make this happen.
Toward that end, I endorse the presentations of Mary Lamielle, Director of the National Center for Environmental Strategies, of Ann McCampbell, M.D., from whom you have just heard, from Libby Kelley regarding electrical hypersensitivities and related issues, and from our other colleagues who have participated in preparation for this meeting.
Now, I would like to familiarize you with a few bare-bones features that can enormously and immediately improve our access to public places, with little or no expense, while more extensive measures are developed for future implementation.
SHORTLIST of Free, Readily Achievable Structural and Design Considerations
Windows that open (consider air-to-air heat exchanger technology)
Daylight, skylights, and the option of incandescent lightbulbs (no fluorescents or LEDS) in at least some specified areas of the facility
Landscaping using plants, trees, ground covers that require no chemical maintenance, and no extensive watering (to minimize mold growth)
Non-chemical IPM inside facility, paths of travel, and outdoors (sidewalks, parking area, bus stop)
No Fragrance Emission Devices (“FEDS”) in at least designated restrooms, and no fragrance distribution systems in Heating, Ventilation, Air Conditioning (“HVAC”) systems
No smart meters for electricity, gas, or water installed in public areas of a facility unless thoroughly and effectively shielded
Separate electrical wiring and/or fiber optics, and kill switches, for at least some areas of the facility so that non-essential computers, printers, fluorescents, others can be shut down without impacting other areas of the facility
No carpet in designated areas
Maintain existing landline phones, and re-install the old ones
Independent variable fresh air ventilation system (aka “fan”), for at least certain areas of the facility, that can be operated by the room occupant without assistance
Signage on and around the facility, in pertinent formats, indicating where accessible (for our purposes) sidewalks, ramps, doors, restrooms, phones, conference rooms, parking are located, along with a posted, readily available schedule of recent maintenance and materials
Signage, in pertinent formats, to designate areas where wi-fi is present, to prevent inadvertent exposure to the degree possible
Designation of areas for re-charging wheelchair batteries, cell phones, computers, vehicles, others using wired electrical outlets
Essential: buzzer or intercom outside the facility to summon building occupants such as the clerk, doctor, child, police, social services employee, grocer, shopkeeper
Study the “Cleaner Air Room” concept and language as per the Indoor Environmental Quality (“IEQ”) Report, pages 47-55, 2005, which is posted on the Access Board’s website (www.access-board.gov/research/building/indoor-environmental-quality)
Susan Molloy, M.A.
Hansa Trail, Snowflake, AZ 85937
928.536.4625
molloy@frontiernet.net
My Presentation to Federal Access Board 5/23/18
On May 23, 2018, the federal Access Board held a town hall meeting in Phoenix to hear from members of the public about their access needs. I was honored to be on a panel, along with Susan Molloy, to make a presentation on the access needs of people with multiple chemical sensitivities (MCS) and electromagnetic hypersensitivities (EHS).
Click here to listen to my presentation (7.5 mins).
Susan Molloy and I, as well as several other people with MCS and/or EHS who made public comments, stressed the profound lack of access that people with these disabilities have to housing, health care, employment, and almost the entire built environment. We urged the Board to take action to increase this access.
For specific next steps, Susan and I endorsed the National Center for Environmental Health Strategies (NCEHS) recommendations for action shown below:
NCEHS RECOMMENDATIONS FOR ACTION
US Access Board, January 8, 2018
Unfinished business from the IEQ (Indoor Environmental Quality) Project
(www.access-board.gov/research/completed-research/indoor-environmental-quality):
Work with our community to develop a plan to address IEQ and the disability access needs of people with chemical and electrical sensitivities or intolerances.
Fulfill the promises of the ADA Accessibility Guidelines for Recreational Activities, September 3, 2002:
Develop an action plan that can be used to reduce the level of chemicals and electromagnetic fields in the built environment;
Develop technical assistance materials on best practices to accommodate individuals with chemical and electrical sensitivities or intolerances;
Address recommendations in the IEQ Report including the need for research on cleaning products and practices that are effective and protective of occupant health.
New Initiatives:
Create a partnership or working group with the National Council on Disability (NCD) and other agencies as appropriate to address our issues.
Appoint a liaison from our community to work with the partnership or working group.
Appoint at least one staff member and one board member as a contact on these issues.
Support the appointment of an individual with knowledge of these issues to the U.S. Access Board and/or the National Council on Disability (NCD).
Facilitate efforts to educate members of the U.S. Access Board and staff, the NCD, and other agencies and organizations, as the opportunity presents.
Invite knowledgeable experts and advocates to work with the U.S. Access Board and the National Council on Disability to advance these issues.
Convene a meeting with the experts to formalize a plan of action to address the proposed initiatives. This plan should in part include joint hearings or stakeholder meetings sponsored by the U.S. Access Board, the NCD, and other agencies as appropriate, to get input from the community. Invite those with environmental sensitivities or intolerances to “SPEAK for themselves” about their health, access, and disability needs.
National Center for Environmental Health Strategies, Inc. (NCEHS), Mary Lamielle, Executive Director, 1100 Rural Avenue, Voorhees, New Jersey 08043 (856)429-5358; (856)816-8820