Disability Studies Quarterly Spring 2009, Volume 29, No.2 <www.dsq-sds.org> Copyright 2009 by the Society for Disability Studies

Environmental sensitivities (ES) involve experiencing adverse reactions to chemicals in ambient air and/or to electromagnetic fields that result in disabling symptoms. Reactions or symptoms can range from mild to life-threatening, can affect any bodily system, and vary from person to person. Gibson and Rice (2008) found the most problematic symptoms reported in 254 persons with self-reported chemical sensitivity (CS) to be tiredness/lethargy, difficulty concentrating, muscle aches, memory difficulties and long-term fatigue. Persons can react to a vast number of triggers, some of the most common being pesticides, formaldehyde, fresh paint, new carpets, diesel exhaust, perfumes and air fresheners (Gibson & Rice, 2009). Chemical sensitivity has been studied more extensively than electrical hypersensitivity (EHS) and seems to affect approximately 13% of the U.S. population (Caress & Steinemann, 2003). Persons report that their chemical sensitivities have been initiated by one large chemical exposure, ongoing lower level exposures (such as in a "sick building"), or by a combination of variables (Gibson, Cheavens, & Warren. 1996; Gibson & Lindberg, 2007).

Life impacts of environmental sensitivities often include difficulties with work, public access, social support, medical care, and housing (Gibson et al., 1996; Johnson, 2000; McCormick, 2000; Zwillinger, 1997). In fact, Gibson and Rice (2008) found that persons with multiple chemical sensitivities (MCS) reported more sickness-related dysfunction on the Sickness Impact Profile than most other populations with disabling chronic illness in the published literature.

Often people with environmental sensitivities do not know that their symptoms are caused by environmental exposures. Gibson et al. (1996) found that it took people with chemical sensitivities a mean of seven years to identify the cause of their symptoms. Once diagnosed, either by a physician or by oneself, a person may seek medical care, visiting a large number of physicians and spending a considerable amount of money in an attempt to improve, only to find that many offered treatments are ineffective. Gibson, Elms, & Ruding (2003) researched 101 treatments (n = 917) with MCS and found that a chemical-free living space and chemical avoidance were the most highly rated therapies among participants.

Given that chemical avoidance is the most effective way of coping with chemical sensitivity, chemical free environments both at home and in the workplace are crucial to those with ES. Finding ways to accommodate this need should be a priority for anyone working with this population, including medical practitioners and advocates. Yet workplace accommodations and safe housing may be the two most difficult challenges for people with ES. Sadly, the ubiquity of chemical exposure and the prevailing lack of understanding and cooperation in the workplace coincide for some to result in unemployment and homelessness.

Over half of those who believed their chemical sensitivity to be caused by one large chemical exposure stated that it occurred in their workplace (Gibson et al., 1996). Fifty-two percent of Gibson & Lindberg's (2007) persons with ES (n = 100) were either working without accommodations or had been driven out of their work due to supervisors' failure to remove workplace barriers. Employers and co-workers did not take their condition seriously and had little knowledge regarding chemical or electromagnetic sensitivities. The lack of workplace education about chemical sensitivities led to harassment and negative attitudes towards this specific population. Unemployment was usually accompanied by financial, social, and psychological losses. Gibson & Lindberg (2007) suggest that providing appropriate work accommodations could improve workplace retention and quality of life for people with disabling sensitivities.

Some persons with MCS have attempted to acquire services from Vocational Rehabilitation Services (VRS). Gibson (2006) found that only 53 of 100 respondents in an MCS employment study were even familiar with VRS and 25 of those had applied to VRS for help. Nine of the twelve persons who physically went to the centers got some help, but only five received any help with employment. Six encountered scented advocates/staff. Nonetheless customers did receive items such as appropriately altered home computers (n = 3), home office equipment (n = 3), air filters (n = 2), and other items such as work clothing or dietary supplements. Problematic for applicants are the facts that VR required psychological evaluations for eight customers and that evaluators not only do not generally make safe accommodations, but also are often uneducated regarding sensitivities and thus engender psychological attributions.

Centers for Independent Living (CILs) are nonprofit corporations that have been established in the U.S. and other countries to provide accommodations and services for persons with disabilities. The centers exist in the United States, United Kingdom (UK), Australia, Canada, and Japan. Mike Oliver (1990) praised the Independent Living Movement for being a new social movement aiming to solve "problems defined by disabled people themselves" (p. 120).

Gibson (2006) inquired about services from CILs and found that the 100 respondents were even less familiar with the CILs than the VRs. Only 33 knew of the Centers, 15 asked for help, and 7 received any services. Though a few customers received exemplary services, many were turned away, seen as psychosomatic, or given only minimal help. Twelve customers found their way to a center, but only 3 reported that the center was accessible and 6 that the staff were familiar with MCS. Seven people reported that their CIL provided the services they requested and 4 believed the response they got was "reasonable" (Gibson, 2006). No one received viable help with housing. Requests for oxygen and transport assistance with a fragrance-free driver were refused, and one person was told that she had a mental illness.

It is important for service providers to know the significance of environmental sensitivities in order to help and to accommodate persons who experience them. There are many facilities across the United States and Canada that help those with disabilities, but help is often unavailable for unfamiliar disabilities like chemical and electrical sensitivity. We undertook this project in order to look further at help received from CILs for customers with environmental sensitivities and to better understand the services and accommodations that respondents would like to see provided in these agencies.

Method

Discussion

Although there were some helpful exceptions, for the most part, results were similar to Gibson's 2006 study in that many persons with ES received poor treatment from Centers for Independent Living. The majority of respondents found CILs to be ill equipped to accommodate their needs or to provide them with services. In addition, persons reported feeling insulted and humiliated by the exclusion and by the suggestion that their sensitivities were mental illnesses. The request for accommodations began with the initial meeting for 19 persons, the most common request being to meet with a scent and smoke-free advocate. For 10 people, even this was not granted. The majority of customers requesting services found the agencies to be inaccessible.

The most common help requested parallels the need for a safe CIL space in that 15 persons needed help with safe housing. Of these 15 customers, one received a referral to Fair Housing, one received help securing a HUD housing voucher, and one was given an outdated list of Section 8 housing. This is particularly problematic given that 17 customers listed safe housing as the most beneficial type of help that they could receive to cope with their sensitivities.

The disability movement has been accused of addressing only a limited range of disabled constituents even with ES notwithstanding; Phil Lee (2002) alleges that many groups such as older people, severely disabled people, and people with learning disabilities are left out. In addition, certain impairments, such as mobility, may have enjoyed more focus than other conditions (Marks, 1999). Chemical and electrical barriers are poorly understood and have not been integrated into a general understanding of disability (Gibson, 2009). Advocates may be unfamiliar with chemical and electrical sensitivities, and may view these invisible conditions as low priorities competing for scarce resources (e.g., as with the participant who was told that there were so many disabilities and they were only focusing on "a few"), or even as a non-legitimate category of disability (e.g., the woman who was told that the CIL did not deal with people who were "mentally ill"). Though CILs were created to be orchestrated by and for persons with disabilities, advocates' understanding of disability reflects that of capitalist industrial society where chemicals are not generally seen as agents of disability or injury. Disability status in current U.S. culture is mediated by the medical profession, which has not integrated environmental sensitivity as a category of disability. Consequently, people disabled by chemicals are not recognized as disabled even in the eyes of other disabled people who work as advocates at CILs. Though CILs were created by and are staffed by persons with disabilities, those with environmental sensitivities are not included as persons with disabilities in the mental schemas of those who organize and offer these services. Doiron (2007) has discussed the general failure of service agencies to address the problem of environmental sensitivities:

Because of social service agencies' lack of knowledge about environmental health issues and toxic environments, people with ES/MCS are not always able to obtain services from them. This lack is even more imperative given the current trends of recognizing environmental issues. It is important to plan ways to educate the leadership in social service agencies so the staff can become informed of such less recognized health issues such as ES/MCS. (p. 141)

Doiron indicts the three paradigms of individualism, neo-liberalism and the biomedical model in providing the context in which denying services to persons with chemical sensitivities is commonplace and acceptable.

In addition, the patriarchal nature of our health care system may disadvantage women with poorly understood and/or invisible conditions. The preponderance of women with environmental sensitivities makes them vulnerable to any gender bias in systems' responses to this population. For example, there is considerable suggestion that the rehabilitation field favors men. Bounds, Schopp, Johnstone, Unger, & Goldman (2003) cite a number of studies that found women to have poorer vocational outcomes than men. In their own study, even with similar demographics and severity, women with TBI were given less Maintenance service (financial support for necessities while enrolled in DVR programs). Only one woman of 23 was successfully employed at closure. A higher portion of men became employed and women's cases were more likely to be closed before services were even begun (VR said that the cases were terminated per client request). Warren, Cavenaugh, & Giesen (2004) cite a number of studies that found women and older persons more likely to have homemaker closure, which, although not seen as optimal in that it is not competitive employment in an integrative setting, is still allowed as a noncompetitive outcome by the Rehabilitation Act. In their own study of blind VR clients, gender was a significant predictor of VR outcome, women being more likely to be closed as homemakers.

Bounds et al. (2003) think that stereotypes may play a role in how clients are perceived and/or view themselves in that men are expected to be earners, while women may have options to stay home. In the Bounds et al. study VR counselors were the informants and the authors acknowledge that consumers may have reported differently (i.e., that cases were closed per clients' request). Crisp (2002) found in an Australian sample, that when interviewed about their situation, the stories of 35 persons with a variety of disabilities embodied dominant gender stereotypes. Crisp urged rehab professionals to examine their own biases and realize that clients' values and strivings are culturally situated.

There is no reason to believe that CILs will operate in any more enlightened fashion than the VRs. In fact, Gibson's (2006) respondents were treated considerably better by VRs than by CILs. Though it may seem counterintuitive given that CILs are situated as being run "by and for" persons with disabilities, persons with ES are not currently constructed by many service providers/advocates as persons with disabilities. Persons with ES may require more flexible and previously undelivered services (e.g., fragrance-free advocates), than better-understood disabilities, thus challenging existing protocols. In addition, the medical notion of disability may operate, even in the minds of advocates with disabilities, for persons with delegitimized conditions. Given the prevalent lack of understanding regarding toxics and health, and that conditions such as ES challenge common beliefs about the safety of common chemicals, there may be a tendency to categorize these conditions as psychosomatic. This tendency may remove the motivation for advocates and others who interact with this population to attempt to grasp the intricacies of how sensitivities develop and operate in people's lives.

In addition, the gender distribution of chemical sensitivity (primarily women) may be influential in engendering some of the dismissive attitudes and behaviors toward this population. Given that the CIL applicants in the present study were almost all women, many gender biases could have been operating. The issue of medical uncertainty was very likely an issue for many of the participants given the lack of understanding of toxicants in general and of environmentally related injuries in specific. Women with environmental sensitivities thus represent a group poorly understood for at least two reasons, making them vulnerable to biased and ineffective interventions.

Ahlgren and Hammarström (2000) found that men were more likely to be able to demand and get services not usually rendered by VR (such as university study), but that these services were denied to women. While men demanded help; women instead hoped for and asked for it. When customers disagreed with VR's offers, men were more often heard and supported (most doctors were men). Women reported that decisions were instead made for them. Women finally stopped "hoping" and left VR, looking for other solutions. The authors believe that the medical uncertainty of unspecified/ambiguous diagnosis for women targeted the women as "difficult clients" and fostered distrust in the relationships which then "followed them into the vocational rehabilitation" (p. 93). Ahlgren and Hammarström conclude, "When doctors as well as social security officers and clients act the way they usually do, men are favored in the system" (p. 94).

The results of the present study raise questions about how persons with environmental sensitivities are to be included in disability services when agencies have limited resources and little understanding of the problem, industrial culture at large has not conceptualized illness from technology as a crisis worthy of attention, and women have not been treated equally in regard to work and rehabilitation. In addition, how will agencies with varying means and staff resources include an emerging disability that requires new knowledge and special unique physical accommodations in order for persons to access services? Currently it appears that service acquisition for environmental sensitivities at these agencies relies on the applicant having the luck of finding that somewhat rare advocate who understands these issues.

Participants in this study have offered suggestions for program content that could be used to educate advocates at CILs regarding environmental sensitivities. Most suggestions revolve around familiarizing advocates with how to manage and accommodate sensitivities on physical, emotional, and mental levels. A program should address symptoms, prevalence, resources, and the need to treat persons with respect. That ES is a substantive disability that yet varies from person to person and for which access is very difficult should also be included. Although a booklet published by ILRU, the educational arm of the independent living movement, was sent to all CILs in 2002 addressing these issues (Gibson, 2002), it is questionable whether advocates have read or utilized the booklet or its advice. Further efforts should be made to ready CIL advocates for consumers with environmental sensitivities. Our recommendation is that each center encourages one advocate to receive training in and to specialize in this disability and create one accessible physical area where customers with ES can meet this advocate. This would begin the process of inclusion for this population within an agency developed specifically to serve persons with disabilities. Agencies must keep services congruent with the public need and industrial culture is creating the need to understand and respond to environmentally induced impairment.

This study has several limitations, including a relatively small number of participants, unknown external validity, and retrospective survey response. Further study is needed to determine if these results are indicative of the larger picture regarding customers with sensitivities and their treatment by CILs.