The Nomads Need Accessible Housing
It is bitterly cold now as the nomads, women in their 70s and 80s, gather in their vans and cars in the department store parking lot on a bitterly cold night. The common thread in their stories is how they were forced out of their homes because their bodies could not tolerate smoking or other triggers of their asthma or multiple chemical sensitivity. Multiple chemical sensitivity is a condition in which the body’s immune and neurological systems cause symptoms similar to allergies, symptoms that can be disabling.
Many of the materials and chemicals found in homes can trigger a severe reaction in the person with chemical sensitivity. Some of these environmental triggers can be detected with expensive testing, but each individual learns from experience what they can’t tolerate and only by spending time in an apartment can they know if it is safe for them. Other people who aren’t sensitive to those triggers may think that the chemically sensitive person is paranoid or spoiled and overly demanding of special treatment. Some had lived in public housing, others in subsidized housing, while others had fared no better in market-rate apartments.
The nomads share stories: “Maria” had almost died in her van last night. Anne had received the results of the test for chemicals in the apartment she hoped to get in Florida, learning that moving to Florida was not a real option.
Anne has deep roots in Salem. Her uncle rebuilt many Salem homes after the Great Salem Fire of 1914, and her father owned a car dealership. After a successful career as an artist, she is adrift.
“We are in hell and we know it. New woman introduced to me . they said “She is the same as you.” Yes. As I listened to myself through her, I realized that Maria, myself, and now her are feeling anxious, depressed, and helpless as a result of the ongoing stress …She was obsessed about all of this like we are…she was hotel hopping and parking lot hopping and staying at certain places where we stay and leaving constantly from bad conditions. Her story was so, so bad, but we all are the same.” —Anne Brown, 82 years old
The best way to help a homeless person is to provide a home first, before any other support or intervention. Finding homes for chemically sensitive people is very difficult. And then allow for a period of support for their physical and emotional recovery from the deep wounds caused by the harrowing experience.
“Along with the fact that there are too few places that come up for rent that might be suitable for individuals with environmental sensitivities/intolerances, there is a lack of education on the part of landlords and/or property managers on the needs and appropriate accommodations including policy “accommodation” to securing a safe apartment (either under subsidized housing conditions for the disabled or under the regular rental agreements). Many encounters become a very negative experience.”—Jean Lemieux, President, Massachusetts Association for the Chemically Injured, Inc.
The best way to prevent homelessness is to keep people in their homes. We must make sure that landlords are held to account for providing a home free of hostile environment harassment, and that need is addressed by H3868, “An Act to create the office of the tenant advocate in the Office of the Attorney General.” Landlords must also enforce the rules against smoking and drugs while providing reasonable accommodations to enable a person with a disability to use and enjoy their home.
Yes, we have problems in public and subsidized housing, but these pale in comparison to those faced by people with multiple chemical sensitivity (MCS), sometimes called idiopathic environmental intolerance (IEI). Many ordinary substances and chemicals even at very low levels can trigger severe reactions in a person with a specific sensitivity, and they can't find safe housing.
“Multiple chemical sensitivity is a chronic condition marked by heightened sensitivity to multiple different chemicals and other irritants at or below previously tolerated levels of exposure…
Reactions can include symptoms such as headache, fatigue, burning of the eyes, nose and throat, voice loss, respiratory or breathing difficulties, dizziness, nausea, gastrointestinal problems, musculoskeletal pain and weakness, sleep disorders, seizure disorders, memory loss, concentration problems, and cognitive dysfunction.”—Massachusetts Association for the Chemically Injured, Inc. (MACI)
Many materials used in building and furnishing a living space, including rugs and adhesives, the materials used to paint or clean, and even the detergents and fragrances in laundry products can contain chemical triggers that can be disabling.
The best way to avoid the severe reactions is to avoid exposure. While the landlord has a legal obligation to provide a reasonable accommodation, the first barrier to relief is that other people don’t see, feel, or smell anything, and the tenant can get labeled as difficult. While expensive tests can demonstrate the presence of certain likely triggers, the real test is for the chemically sensitive person to go into the apartment or other housing and see if there is a reaction.
A related condition that also can be triggered by various chemicals is mast cell activation disorder or mast cell activation syndrome.
"Idiopathic Mast Cell Activation Syndrome (MCAS) is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis—allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea.”—American Academy of Allergy, Asthma, and Immunology.
Many people with MCS lack an effective solution for safe housing for their specific disability. According to Susan Molloy, M.A., people with MCS need different architectural standards than others because integrated housing (that accepts all tenants) may not be accessible to them. However, if built to be accessible by people with MCS, Molloy asserts that all tenants would benefit.—THE ECHO and MACI News: Newsletter of Ecological Health Organization and Massachusetts Association for the Chemically Injured, Inc. Vol. XVI Issue12 Spring 2006
Jean Lemieux, President of the Massachusetts Association for the Chemically Injured (MACI) said,
“I am the one who takes the calls or emails [from] people in need of finding safe housing and I have no listing of where to send them.”
We propose that the Commonwealth should develop suitable housing that will meet the needs of this population, and urge consideration of a program to research, plan, and develop at least a pilot program. There are experts as well as networks and groups of people with MCS who can provide information and resources.
Stavros Center for Independent Living, the Boston Center for Independent Living (BCIL), the Disability Policy Consortium (DPC), CLW, and other advocates are asking that the Housing Bond Bill, H4138, The Affordable Homes Act, establish a Commission on Housing Accessibility, that would undertake a broad reexamination of housing accessibility across all ages and disabilities, according to Brianna Zimmerman. Zimmerman (she/her) is the Systems Change Advocate, Stavros Center for Independent Living. The Commission would address the need for accommodation in housing for a broad range of persons with disabilities including MCS, mast cell activation disorder, asthma, COPD, as well as people with intellectual or developmental disabilities, neurodiversity, and mental health disabilities.
“Please, please do something for the sick and suffering elders who get no consideration at all and mean nothing to anyone.”—Anne Brown, 82
For more information please contact Brianna Zimmerman at Stavros bzimmerman@stavros.org / (413) 256-0473 Ext 121, Felix Jordan at the Boston Center for Independent Living fjordan@bostoncil.org, or R Feynman at the Disability Policy Consortium rfeynman@dpcma.org (617) 993-6021.
Signatures
Jerry Halberstadt Coordinator, the Stop Bullying Coalition
Anne Brown
Brianna Zimmerman Systems Change Advocate, Stavros Center for Independent Living
Felix Jordan Boston Center for Independent Living (BCIL)
R Feynman Disability Policy Consortium (DPC)
Center for Living and Working (CLW) Independent living in Worcester area
Southeast Center for Independent Living (SCIL)
Pamela Goodwin Stop Bullying Coalition
Bonny Zeh Stop Bullying Coalition
Anonymous Watertown resident.with MCS
Resources for MCS
American Academy of Allergy, Asthma & Immunology (AAAAI), Mast Cell Activation Syndrome
Canadian Committee on Indoor Air Quality and Buildings (CCIAQB), Guide for Indoor Air Quality Module 13 Addressing Chemical Sensitivities 2019 "The purpose of this Module is to inform building operators, managers, occupants, and visitors about the complex medical condition known as chemical sensitivities, and potential role(s) that indoor air quality (IAQ) may play. The goal is to prevent the development and subsequent triggering of symptoms in susceptible individuals. The guide includes information and tools to assess, address, and prevent potentially problematic indoor air contaminants. Communication is important to accommodate individuals with chemical sensitivities"
Chemical Sensitivity Foundation
Environmental Health Association of Quebec, "The mission of the Environmental Health Association of Québec (EHAQ) is to achieve equity, inclusion, and accessibility in all spaces for people experiencing the disability of multiple chemical sensitivity (MCS), by promoting education and working to eliminate poverty, isolation, and discrimination experienced by this population group." https://aseq-ehaq.ca/en/association/about-us/mission/
Gibson, Dr. Pamela Reed, Environmental Sensitivities Resource Team (ESRT), https://www.mcsresearch.net/
Papers: https://www.mcsresearch.net/read-me
Hoffman TILT Program for Chemical Intolerance at UT Health Science Center San Antonio, Department of Family and Community Medicine: https://tiltresearch.org/
Johnson, Alison, Multiple Chemical Sensitivity Books, DVDs & Cards
Johnson, Alison, Fragrance-Free Workplaces, Wave of the Future? Video
Baker-Laporte, Paula and John C Banta, Prescriptions for a Healthy House, 4th Edition: A Practical Guide for Architects, Builders and Homeowners April 11, 2022
Larson, Sandra, Making Housing More Accessible for People With Multiple Chemical Sensitivities: Accessibility for this challenging disability can look different from other measures—but addressing it could help improve everyone’s health, Shelterforce, June 28, 2023
MACI, The Massachusetts Association for the Chemically Injured is a non-profit statewide support, education, and referral organization for people with Multiple Chemical Sensitivities (MCS), others who are sensitive to chemicals in the environment, and those who care about the prevention of chemical injuries.
Masri, S., Miller, C.S., Palmer, R.F. et al. Toxicant-induced loss of tolerance for chemicals, foods, and drugs: assessing patterns of exposure behind a global phenomenon. Environ Sci Eur 33, 65 (2021).
Miller, Claudia S, Raymond F. Palmer, Tania T. Dempsey, Nicholas A. Ashford, and Lawrence B. Afrin, Mast cell activation may explain many cases of chemical intolerance, Miller et al. Environmental Sciences Europe, (2021) 33:129, https://doi.org/10.1186/s12302-021-00570-3
Molot, John, Sears, Margaret, Marshall, Lynn Margaret and Bray, Riina I.. "Neurological susceptibility to environmental exposures: pathophysiological mechanisms in neurodegeneration and multiple chemical sensitivity" Reviews on Environmental Health, vol. 37, no. 4, 2022, pp. 509-530. https://doi.org/10.1515/reveh-2021-0043
Molot, John and Sears, Margaret and Anisman, Hymie, Multiple Chemical Sensitivity: It’s Time to Catch Up to the Science (February 28, 2023). Available at SSRN:https://ssrn.com/abstract=4373616 or http://dx.doi.org/10.2139/ssrn.4373616
Palmer, R.F.; Dempsey, T.T.; Afrin, L.B. Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity. J. Xenobiot. 2023, 13, 704–718. https:/ / doi.org/10.3390/ jox13040045
Segura, Corinne, My Chemical-Free House, https://www.mychemicalfreehouse.net
Shelterforce staff, Q: What Are the Three Major Types of Community- or Resident-Controlled Housing and How Do They Work? Shelterforce, January 4, 2024.
Steinemann, A. National prevalence and effects of multiple chemical sensitivities. J Occup Environ Med 2018;60:e152–6. https://doi.org/10.1097/jom.0000000000001272.
Steinemann, Anne, Doctor, Professor of Civil Engineering and Chair of Sustainable Cities at the University of Melbourne, Australia Fragrances in consumer products
Ziem, Grace, Dr. Grace Ziem's Environmental Control Plan for Chemically Sensitive Patients
A version of this article has been submitted to the Joint Commission on Housing of the General Court of Massachusetts as testimony seeking the establishment of a Commission on Housing Accessibility.