Special Needs of the Chemically Sensitive

Excerpted from Recognition, inclusion and equity: The time is now – Perspectives of Ontarians living with ES/MCS, ME/CFS and FM. Varda Burstyn for MEAO and the OCEEH project 2013. PP 163-166

THE SPECIAL NEEDS OF ES/MCS

Safe Housing 3

‘HOUSING IS OFTEN A NIGHTMARE FOR THOSE WITH ES/MCS’
DR. ANN MCCAMPBELL, CHAIR, NEW MEXICO TASK FORCE ON MCS

Many people with MCS have lost everything – including their health, homes, careers, savings, and families. They are chronically ill and struggle to obtain the basic necessities of life, such as food, water, clothing, housing, and automobiles that they can tolerate. Finding housing that does not make them sicker, that is, housing that is not contaminated with pesticides, perfume, cleaning products, cigarette smoke residues, new carpets or paint, and formaldehyde-containing building products, is especially difficult. Many people with MCS live in cars, tents, and porches at some time during the course of their illness. In addition, people with MCS usually have financial difficulties. One of the most unjust aspects of the anti-MCS movement is that many expert witnesses are paid $500 per hour to testify against people disabled with MCS who are seeking that much money to live on per month.

AIR QUALITY AND THE BUILT ENVIRONMENT – A DISTINCT ADDITIONAL DIMENSION

Those struggling with ES/MCS have a number of similar needs to those with ME/CFS and FM, especially when they have multiple diagnoses. However they also have needs that are unique, urgent and chronic, but very poorly understood by those who do not have this condition, including the vast majority of health service providers and planners.

The poor quality of indoor air has received a great deal of attention in recent years and rightly so. With energy-saving building techniques making houses and offices ever more air tight, and with increasing proliferation of unhealthy chemicals in everything from building materials to food containers to make-up, studies show clear correlations between poor indoor air quality and health status for the population as a whole. The American Lung Association provides a good summary of key AQI issues (1). They state that ‘The Environmental Protection Agency lists indoor air quality as the fourth largest environmental threat to our country.’ An online booklet from the EPA, ‘The Inside Story: A guide to Indoor Air Quality,’ introduces its subject as follows:

In the last several years, a growing body of scientific evidence has indicated that the air within homes and other buildings can be more seriously polluted than the outdoor air in even the largest and most industrialized cities. Other research indicates that people spend approximately 90 percent of their time indoors. Thus, for many people, the risks to health may be greater due to exposure to air pollution indoors than outdoors (2).

So one major conclusion of this body of research is that better indoor air quality should become a public health issue in its own right. This is an area where clinical public health needs to develop a presence and a practice.

However, for those living with ES/MCS, our most sensitive ‘canaries,’ poor air quality creates truly terrible problems because most indoor spaces are full of chemicals that they experience as immediately painful and disabling, indeed as toxic miasmas permeating every interior space. The resultant biophysical pressures on them to withdraw from all such laden spaces and, indeed, from all persons who use such chemicals in personal grooming, isolates those with severe ES/MCS to degrees simply not imaginable by most people.

SAFE HOMES ARE A MEDICAL REQUIREMENT FOR THOSE WITH ES/MCS

When sufferers do not have adequate economic resources to create safe spaces to live – safe oases, in effect – it is common for them to live in a state of homelessness, in tents, cars, on balconies or in stripped-down trailers in remote areas, or to remain very unwell in unsafe dwellings. Social relationships and belonging in familial, friendship and community contexts are undermined, not to speak of the ability to seek and access health and social support services (3).

WITHOUT SAFE HOUSING THOSE WITH ES/MCS DETERIORATE

That was a terrible journey. … It progressively became worse as I deteriorated. But … the City of Toronto Housing, when they got letters from my doctor saying I needed to be transferred, and even to the point where the doctor said I was concerned even about my life, that I could I die in … the available housing … Because I didn’t fit into their criteria that was, like cancer, they said the only thing they could do was put me on the waiting list which is ten years, that I couldn’t get special consideration for transfer. … I was … being kept in relapse because I couldn’t get to a place where I could be stable. So that was psychologically really awful, being in relapse and knowing that you don’t have to be. … It’s been very sad. Almost every avenue where I’ve needed support or help, the initial and continued response was no response that helped me get a foot up. MaryLou ME FM MCS

Safe Housing 2 Therefore the issue of air quality, in all its multiple aspects and applications, is a truly critical dimension that must be factored in at the centre of care and support for this condition, not at the margins. It is not an optional add-on.

Photo: Rhonda Zwillinger, The Dispossessed.

For those who are acutely sensitive to electromagnetic frequencies (EMF sensitivity) – whose symptoms are exactly like those of people with chemical sensitivities and often overlap those sensitivities – life these days can be equally nightmarish. Being in an environment, both built and outdoors, pulsing with unseen waves that make one sick, and being surrounded by people who never turn off their electronic devices brings on severe symptoms of disorientation, body pain, weakness, shortness of breath and so on. Sweden has constructed a micro-wave and device-free village for such people so they can achieve ‘avoidance’ and stay well in an environment that has all such frequencies removed. As with the chemically sensitive, removal of the incitant leads to restoration of normal physical and mental function.

Among specialist physicians, it has become axiomatic that the first line of medically prescribed treatment for those with ES/MCS is avoidance of incitants – at least to a level where symptoms disappear and stability is possible (4). The word ‘avoidance’ is so easy to say, and yet the reality is extremely difficult to achieve. It is a basic corollary of the avoidance axiom that ES/MCS sufferers cannot stabilize or improve unless they can practice avoidance in their homes. A safe home for a person with ES/MCS must be conceptualized even more as an assistive breathing device than as a shelter from the elements.

The central problem for the majority of people seriously afflicted with ES/MCS is that at the very moment in time when income generally drops or disappears, the costs of finding and/or creating a safe home escalate greatly. In the US, in 2003, the average costs for this were estimated at $57,000, when post-onset income levels dropped to below $20,000 per year (5). It is usual for people to move multiple times in search of a safe place, and to lose life savings as a result of financial penalties due to those moves. Homelessness is far too frequently the result (6).

SAFE HOUSING SHOULD BE BY Rx AND SAFE SHELTERS ARE NEEDED

Safe housing should be by prescription, too. It’s a medical need. CERA [Centre for Equality Rights in Accommodation] has done a post on the medical need for housing. We also need to be able to get away. There’s no safe shelter for us to go for two or three days. What almost did me in was asphalt on the road, four times, on Bloor Street when I was living there. I had no place else to go. The roof repairs, again, very toxic materials in asphalt. It almost killed me, but there was no place to go. We need to have places like safe shelters. LMS MCS.

An Apartment Building in Zurich – An example to emulate

Since good indoor air quality is a medical necessity for the chemically sensitive, safe housing is the precondition to stabilization and improvement.

In Swizterland in 2013 a pioneering project was completed.

switzerland 1 An apartment building for the chemically sensitive in Zurich.

“No smoking, no perfume, no mobile phones: Swiss apartment building provides refuge for the hypersensitive”

Thus read the headline of an article in the Daily Mail, 7 April 2014, in which reporter Sam Web chronicled the social, financial, design and materials journey undertaken by Zurich city officials in partnership with MCS patients, to help those living with severe chemical sensitivity by providing that most important thing: a safe home.

In an enlightened move, the city of Zurich “made available the land and provided interest-free loans to help finance the £4.1m project,” Web wrote. He quoted Lydia Trueb, a Zurich housing office spokeswoman: “’We wanted to help these people to have a calm home where they hopefully will be less sick.’”

Construction started in March 2012 and ended October 2013. The project has received a lot of attention in German-language media, both radio and television, architectural magazines and even the journal for Swiss physicians. Learn more about all aspects of the project at the Daily Mail. Many more details about the building process can be found at EI Wellspring.

To view some multi-unit developments, most private, one public, in the United States, visit EI Wellspring too. Aside from 6 units in a housing co-op in Canada, there are no other such developments yet.

SAFE HEALTH FACILITIES AND SCHOOLS ARE CRITICALLY IMPORTANT

By the same token, health facilities, in order to help and not harm must also be places where air quality is safe. Many people with ES/MCS do not seek primary care when they should because they must risk feeling very sick simply to consult their doctor. It is a cruel irony of modern life that hospitals are very dangerous sites for those with ES/MCS. A combination of poor air quality and poor-to-no understanding of the need for safe reception protocols can create a minefield of terrifying proportions. Many people with ES/MCS do not even seek specialist and hospital care when they need these because they are not prepared to risk their health in hospital environments.

For children and youth schools must be places where they are safe enough to learn and develop and come home healthy every night. This is not the case at this time. Above all, the use of no-toxic cleaning products, the banning of pesticides and the vetting of new equipment and furnishings for off-gassing of chemicals in schools would create an ‘equal opportunity breathing environment’. Such measures would benefit all children too, for children are much more vulnerable than adults to chemical hazards and deserve to study in a safe place. For chemically sensitive children, if the school is not safe, then a safe home becomes overwhelmingly important.

Safe Housing 1.png Regina Caeli: a private development of safe housing near Dallas

Hence, for those with ES/MCS, from the point of view specifically of health and social supports, living in a safe dwelling is a first-line health requirement.

WHEN SAFE OASES CAN BE ACHIEVED AND OTHER EXPOSURES MANAGED, WONDERFUL THINGS HAPPEN.

People at mild levels of chemical sensitivity need never ‘crash’ into more severe stages, or can recover quickly from early ‘crashes’ when safe shelters exist to allow for safe short-term and emergency housing.
Those who are already more seriously affected may recover to more mild levels and return to full productivity; or may be able to feel well enough that they can earn a living working from home; and certainly will have a quality of life that is bearable, even with severe ES/MCS when their dwellings support, not harm, them.
Those who experience symptoms in more toxic environments beyond the home can still be functional parents and spouses at home, minimizing the cascade of negative consequences to families such a disability would otherwise bring.
Children can recover from exposures in other contexts, or, if needed, have a place where schooling can proceed and a life built despite the condition.
For elderly or more seriously disabled people, safe supportive/assisted living, long-term care and palliative care facilities – of which there is not one unit or bed at present – mean that daily life can be made bearable, possibly even enjoyable. Those with ES/MCS who live in facilities not adapted to their condition now suffer immensely. Life is shortened either through health stresses or suicide.

In all these ways, assisting ES/MCS sufferers to achieve healthy housing is the most health-effective and, eventually, cost-effective preventive or supportive measure that can be taken. At this time, however, only seven units of safe social housing (in Barrhaven, Ottawa) have ever been constructed in Ontario (or Canada, for that matter). Turnover is very slow and the waiting list very long, indicating a great need for such housing. Such housing should be understood within the same frameworks as both supportive housing (mental illness, physical disabilities) and as medical housing (safe breathing envelope.)

Finally, it would be impossible for persons ES/MCS at a certain level of severity to come for extended services at the proposed Ontario Centre of Excellence in Environmental Health hub unless a safe lodge is created for them (7). Most cannot stay at hotels or even the houses of friends, and cannot respond to treatment if they are not stable in a safe residence.

…

ENDNOTES –

[1] American Lung Association, Indoor Air Quality, accessed September 15, 2013. http://www.lung.org/associations/charters/mid-atlantic/air-quality/indoor-air-quality.html

[2] United States Environmental Protection Agency (EPA), The Inside Story: A Guide to Indoor Air Quality, accessed September 15, 2013. http://www.epa.gov/iaq/pubs/insidestory.html

[3] Juliene G. Lipson, ‘Multiple Chemical Sensitivities: Stigma and Social Experiences,’ Medical Anthropology Quarterly, Vol. 18, Issue 2, pp. 200–213, ISSN 0745-5194, online ISSN 1548-1387. Quote: ‘Multiple Chemical Sensitivity (MCS), an intolerance to everyday chemical and biological Substances in amounts that do not bother other people, is a medically contested condition. In addition to symptoms and the ongoing difficulties of living with this condition, this hidden and stigmatized disability strongly impacts social relationships and daily life. Based on an ethnographic study, this article introduces the context of MCS in terms of cultural themes, the media, and the economic power of industries that manufacture the products that make people with MCS sick. Participants’ experiences with family members and friends, in work and school settings, and with physicians exemplify the difficulties of living with MCS.’

[4] Pamela Reed Gibson, Amy Nicole-Marie Elms, and Lisa Ann Ruding, ‘Perceived Treatment Efficacy for Conventional and Alternative Therapies Reported by Persons with Multiple Chemical Sensitivity,’ Environmental Health Perspectives, Vol 111, Number 12, (September 2003): 1498-1504. (Note: Participants had consulted a mean of 12 health care providers and spent over one-third of their annual income on health care costs.) Quote: ‘This study examined self-reported perceived treatment efficacy of 101 treatments used by 917 persons with self-reported MCS. Treatments examined included environmental medicine techniques, holistic therapies, individual nutritional supplements, detoxification techniques, body therapies, Eastern-origin techniques, newer therapies, prescription items, and others. … Both creating a chemical-free living space and chemical avoidance were rated by 95% of respondents as helpful. Results for most therapies were mixed.’ [Emphasis added]. See also Molot, 2013.

[5] Ibid.

[6] See for example: Rhonda Zwillinger (Photographer), The Dispossessed – Living With Multiple Chemical Sensitivities, (Photo documentary, 1998). Available from http://www.rhondazwillinger.com/dispossessed.php?n=8 .

[7] For the importance of special housing, both for residence and for the OCEEH Lodge, see Environmental Health Centre Dallas’s page on housing available at http://www.ehcd.com/ehc-d-patient-less-toxic-housing-services/

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Environmental Sensitivities and Housing

Every year, CERA receives a significant number of calls from tenants being made ill from the poor indoor air quality in their apartment buildings. Most of these individuals suffer from environmental sensitivities and are particularly sensitive to contaminants in the air. With funding assistance from the Ontario Trillium Foundation, CERA recently launched HomeSafe, an initiative to educate tenants and multi-unit housing providers on strategies to improve indoor air quality and create healthier living environments. We are currently in the process of developing a voluntary set of guidelines for housing providers and an associated resource guide.

What Are Environmental Sensitivities?

The term environmental sensitivities describes a poorly understood chronic medical condition (or set of conditions) that affects millions of Canadians. People with environmental sensitivities (known variously as multiple chemical sensitivity, chemical injury, environmental illness, and environmental hypersensitivity) become sensitive to relatively low levels of contaminants in the environment. These individuals can become severely ill or disabled due to the presence of substances in the air at levels that would not affect most people.

Environmental sensitivities can be extremely debilitating, making it very difficult to find and maintain housing and employment, and frequently turning people into prisoners of their homes. Symptoms vary from individual to individual, but can include headaches, shortness of breath, abdominal pain, fatigue, muscle spasms, difficulty walking and with fine motor skills, nausea, irregular heartbeat, hives, high blood pressure, difficulty concentrating, and anxiety and depression. Primary treatment often focuses on avoiding contact with substances which lead to these symptoms.

While environmental sensitivities are not well understood by the general public, they are recognized by Health Canada, the Canadian Health Network, the Canadian Centre for Occupational Health and Safety, the Canada Mortgage and Housing Corporation, the Canadian and Ontario Human Rights Commissions, the Ontario Medical Association and the Environmental Health Committee of the Ontario College of Family Physicians – among others.

Why Do Apartment Buildings Make People Sick?

Multi-unit housing exposes residents to a variety of substances which can make them sick, and which can act as “triggers” for people with environmental sensitivities and other environment-related illnesses, such as asthma. These substances include:

Petroleum products such as gasoline, natural gas, propane, asphalt, glues, solvents, plastics, urea formaldehyde foam insulation, polyurethane foam, and polyester and acrylic fibres found in textiles. (these products release toxic Volatile Organic Compounds (VOC’s) which are unhealthy for anyone, but which can make people with ES extremely ill)
Construction/renovation materials such as treated wood, paint, wood stripper, wood stains and sealants which release VOC’s
Cleaning products (especially scented ones) such as floor cleaner, stripper, floor polish, laundry and dish detergent, furniture polishers, air fresheners and toilet pucks, toilet bowl cleaners, and fabric softeners
Scented personal care products such as hand and shower soap, shampoo, hand sanitizers, perfumes, hair gel and sprays, and after shave
Exhaust fumes from cars, trucks, buses, etc.
Tobacco smoke
Pesticides, herbicides and fertilizers
Naturally-occurring substances such as pollen, dust and pet dander
Mold and mildew
Electromagnetic radiation from household appliances like fridges, televisions, computers, etc.

The presence of these environmental substances – even in very low concentrations – can cause residents with environmental sensitivities and related conditions to become extremely ill and disabled. To maintain the health and ability of residents with sensitivities, along with the resident population generally, it is critical that housing providers take steps to remove or at least minimize the presence of these substances.

It is important to realize that these substances do not merely come from the inside of buildings. They also come from the surrounding area: lawn sprays, fumes from lawnmowers, vehicle exhaust, pollutants from nearby commercial and industrial activity, high tension power lines, etc. The surrounding environment can add greatly to the challenge of creating healthy housing.

Creating Healthy Living Environments: the Law

While creating healthy living environments is a worthwhile goal for obvious reasons, it is also the law. Under Ontario’s Human Rights Code, housing providers have a legal obligation to respond to the needs of tenants with disabilities, such as those suffering from environmental sensitivities. When a resident requests modifications to a building’s structures, policies or practices in order to address particular needs related to a disability, the housing provider will have to do its best to accommodate this request. In the case of a person with environmental sensitivities, this could mean changing to less toxic, unscented cleaning products and establishing new protocols with respect to renovations, maintenance and cleaning, among other things.

Once a resident has established a medical need for some action, the housing provider will need to act on the request promptly, respecting the resident’s need for confidentiality. The housing provider must accommodate the resident’s needs to the point of “undue hardship.” That is, the provider should take the most appropriate action unless it can demonstrate that this action would be clearly unaffordable (taking into consideration available sources of funding) and/or would be an unreasonable health or safety risk. If the “best” solution is not possible, the housing provider will have to investigate other options.

The Province of Ontario is also in the process of developing an Accessible Built Environment Standard as part of the Accessibility for Ontarians with Disabilities Act (AODA). The proposed standard includes a detailed guideline for indoor air quality which could become the norm for new – and possibly existing – residential buildings in the years to come.

Carole’s Experience

Hello, I am Carole and have an educational and professional background in nursing, child and youth behavior, physical rehab and environmental health.

I have been living with MCS – Multiple Chemical Sensitivities for 10 plus years. I was first diagnosed with Fibromyalgia, Chronic Fatigue and Sjogrens. Several years, many specialists and alternative therapies later, I was diagnosed with MCS, multiple food allergies, gluten-intolerance and Scleroderma. My autoimmune system is compromised; frankly, my body is under attack by its own cells and it is unable to detoxify without medical measures.

Prior to diagnosis with MCS/ES –Environmental Sensitivities, my health was rapidly declining following a significant life event. My search for recovery began earlier than this event, when I noticed changes in my cognitive abilities, sleep pattern, weight, pain levels and physical abilities. Months later, working as a community nurse became a very great challenge. Within 6 months and several periods of absences, I resigned on the recommendation of a GP. Symptoms significantly increased plus there was dramatic weight loss and I had difficulties with daily living activities. My main income was from the social system. My main focus became caring for my child and my health. Life changed. Thankfully I found a great Environmental Medicine Doctor whose methodology treated the root cause, and I could glimpse hope for change in my wellbeing.

I continue to be chemically ill, gluten intolerant, etc. However, I manage significantly better with air flow barriers in my apartment, a rotation diet of organic food (when possible), R-O water, carbon and hepa filter air purifier, carbon filter mask when needed, resuming some physical, social and spiritual activities outside my home, giving back to an organization for MCS/ES sufferers, EHAO-Environmental Health Association of Ontario. EHAO provided resources like CERA’s contact information, networking opportunities and I was reminded I am not alone with this invisible and misunderstood illness. I had opportunity to give back to this organization, thus able to remind others with ES that the general public’s impression is not the truth we live.

We know we are not mentally ill, hypochondriacs, or from another planet. We know the chemical soup of society does not fit well with our compromised immune and detoxifying systems; for some of us, it may be the cause of our illness, for others, the cause is rooted elsewhere. Regardless, we know our body’s immune and detoxification systems do not function as most and cannot process and flush the toxic chemical soup of modern society.

I am grateful for the compassion, understanding, knowledge of my Environmental Medicine Doctor, family and friends, and social services, plus the collaboration that occurred with the landowner, property manager and superintendent of my building.

The relationship with the management team was built with the help of CERA as advocate, who required medical-legal documents and openness from both parties, since initially discussing accommodations was adversarial. Once management understood that the Ontario Human Rights and the Canadian Human Rights Commissions acknowledge ES as a protected disability and they are obligated to accommodate, the relationship changed positively. Providing management with potential resources of ‘safe’ products fostered this process. CERA developed guidelines for landlords to accommodate identified MCS tenants, resources for supplies of low VOC and green products and other ways to create healthy apartment living, now available on their website.

I wish I knew CERA earlier, likely avoiding prolonged debilitation due to poor air quality. With the small accommodations the property management has provided, the treatments I now receive have opportunity to effect my health positively with a reasonably chemically ‘safe’ place in which to live. I know this because there is significant change in my health status after the accommodations were made. Proper notice, no-VOC products, and renovations coordinated with voluntary apartment absences have contributed to an improved, not perfect,
living environment in my ‘home’. I am grateful for the working relationship we have established.

Resources

CERA’S Environmental Sensitivities and Rental Housing:
A Self-Advocacy Toolkit.

CERA recognizes indoor environmental health hazards as a serious issue in Ontario’s housing stock. As an organization with limited resources and capacity, we are unable to respond to the overwhelming number of requests for assistance and advocacy we receive each year related to accommodations for environmental sensitivities. In response to this need, we have created this Self-Advocacy Toolkit to assist people to claim their rights under the Code.

We are available as a resource during the accommodation process – we can answer questions, and review some of your documentation. However, we are not able to communicate directly with landlords on your behalf. If you are living with environmental sensitivities, and require supports for a disability-related accommodation in your rental housing, this Self-Advocacy Toolkit can help.

Canada Mortgage and Housing Corporation has a wide range of online resources related to healthy housing and indoor air quality:

The Medical Perspective on Environmental Sensitivities. Written by Margaret E. Sears for the Canadian Human Rights Commission (2007)

Accommodation for Environmental Sensitivities: Legal Perspective. Written by Cara Wilkie and David Baker for the Canadian Human Rights Commission (2007)

Environmental Sensitivities and Multi-Unit Housing: A Review (2009) Microsoft Word DOC

“Breathing Easier in Apartment Buildings.” Article in Canadian Apartment Magazine (March 2011) PDF

Are our homes making us sick? Presentation from the 2010 Co-operative Housing Federation of Canada Annual General Meeting (June 2010) PowerPoint Presentation

“Creating Healthy Housing”. Article in Fair Exchange, the magazine of the Federation of Rental Housing Providers of Ontario (March 2010) PDF

“Creating Healthy Apartments: What You Need to Know” pamphlet. English French Arabic Chinese Punjabi Russian Spanish Tamil Urdu

Creating Healthy Housing: Guidelines for Multi-Unit Housing Providers. English French

Creating Healthy Multi-Unit Housing: A Resource Guide. PDF