Independent Life, Housing & Multiple Chemical Sensitivity

Jerry Halberstadt Mon, 02/26/2024 - 17:09

Draft prepared for presentation to the ILC Housing Working Group 02/27; ILC Housing Projects , A project of the MA Association of Independent Living Centers and The MA Statewide Independent Living Council. 

Multiple chemical sensitivity threatens independence

Thank you to Jordan Stocker and the Independent Living Center Housing Working Group for the opportunity to meet with you and Jean Lemieux, President of the Mass Association for the Chemically Injured, to better understand the challenges faced by people with multiple chemical sensitivity.

Independent Living Centers provide an essential service to the disability community and to society. I was privileged to work with Mary Margaret Moore at the Independent Living Center of the North Shore and Cape Ann. Her example encouraged respect for every person and she encouraged peer advocacy to seek universal solutions to access.

  • Multiple chemical sensitivity (MCS) is an invisible disability that limits access to housing and many public situations. MCS creates reactions that can appear with severe allergy-like symptoms.

  • Tenants with MCS have the right to a reasonable accommodation, however landlords don’t see the need because they don’t feel a reaction to the chemical trigger. And there may be no way to provide a safe residence in that housing setting.

  • How can we empower people living with multiple chemical sensitivity?

  • How can we intervene in policy through education and advocacy?

In my role as Coordinator of the Stop Bullying Coalition, I learn of instances where a tenant is unable to get a reasonable accommodation, is forced out of their home, and made homeless, such as the “nomads,” elderly women living in their cars.

How can we understand what is going on when a person is homeless, unable to find safe housing, and when they reject or flee a place that to anyone else seems perfectly desirable? The landlord sees nothing and feels nothing, but the tenant is unwell.

The tenant may be forced out because of the toxic environment and become homeless.

Smoking, drugs like cannabis or meth, cleaning materials, laundry detergents and fragrances, renovations, volatile organic compounds (VOC), paint, pesticides, fragrances, air fresheners, and more can harm a person with chemical sensitivity. It is hard to prevent their use.

Smoking and drug use are prohibited in housing, yet managers and landlords are often unable or unwilling to enforce the rule, or the housing court will not evict an elderly person for breaking this rule.

Because the source of the problem is not seen or felt by others, they may make the mistake of thinking the person is imagining things or has a psychological problem.

“The evidence that MCS is a biological condition is robust and can no longer be referred to as “controversial.” ---John Molot MD, expert in environmental medicine.

 

Multiple chemical sensitivity (MCS) is an invisible disability that affects 12.8% of people, according to a recent national survey.

A nationally representative cross-sectional population-based sample of adult Americans (n= 1137) was surveyed in June 2016. Among the population, 12.8% report medically diagnosed MCS and 25.9% report chemical sensitivity. ---Dr. Anne Steinemann is Professor of Civil Engineering; expert on health impacts of pollutants. --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.

Resources

http://stopbullyingcoalition.org/mcs

DISCUSSION

  • 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

  • How can we provide safe shelter in the community? Let’s support creation of a legislative commission and/or a pilot program.

  • Encourage people and places to be scent-free.

  • Can ILCs be clearinghouses for housing? Identify, educate realtors? Education of landlords?

  • Education is needed.

  • Patients need help finding doctors who are qualified to help.

  • Collect data on how many of yous clients have MCS by using questionnaires? QEESI (Quick Environmental Exposure and Sensitivity Inventory). is the most widely used, validated screening questionnaire for chemical intolerance that is available for personal use. Tiltresearch.org

 

Tags

public health