Environmental Illness—A Proposed Policy

Marsha Saxton, International Liberation Reference Person for Disabled Persons

People with “environmental illness” (EI), also called “multiple chemical sensitivities” (MCS), struggle with limitations in their lives that also affect the people around them. Environmental illness is typically explained as a weakened immune system that results in allergic reactions to or lower tolerance for certain substances commonly found in things like perfume, scented personal products, cleaning products, building materials, and mold. It is difficult for people with this condition to avoid these substances, because they are everywhere people gather. People with EI may hope for or expect the RC Community to hold workshops and classes where there is little or no mold, animal dander, smoke, common cleaning products, new paint, or new carpeting. They may ask people to not use scented soaps, deodorant, laundry soap, shampoo, or perfume. Some RC Communities have distributed lists of recommended products and washing instructions in an effort to make RC events more comfortable for people with this condition.

In helping people with environ-mental illness,  there are many factors to consider:

• The beauty and health industries restimulate us with messages that say we should improve the smell of our bodies by using scented products.

• Humans and the environment are harmed by dangerous chemicals that are used unnecessarily in a wide range of household and personal products.

• Though EI usually affects only a few people in a given RC Community, the illnesses triggered by the substances mentioned can be debilitating.

• In general, the medical system does not recognize this condition as “real,” though many self-help books and web sites claim the validity of it and offer networking and advice.

• People with disabilities and chronic illnesses can feel oppressed by cultural messages that tell them to just “get cured” and “it’s all in your head.” Directions in Co-Counseling sessions may sound like that.

• People with EI may feel in a “bind” because the RC events that can help them often take place in environments that seem too difficult to be in.

• As in the wide world, in RC the issue is polarized. People with EI often feel excluded, isolated, and misunderstood. A few allies try to fulfill their requests by distributing lists of washing instructions and products, and enforcing their use. Other RCers feel impatient and irritated by what seem to be excessive requests for substantial changes in personal habits and workshop sites, that can drain limited resources in order to meet the unusual needs of a few people.

• Long lists of complex instructions and product recommendations can be confusing and restimulating. It is not clear that they change behavior; they may instead inadvertently reinforce the isolation of the people about whom we are trying to be thoughtful. 

There are legitimate concerns and confusions on all sides of the debate.  Fortunately, we have the tools of discharge and re-evaluation.

However, I have noticed that people are not discharging enough about this issue. We seem to choose our positions and forget to discharge about it.

CAN WE RECOVER FROM ENVIRONMENTAL ILLNESS?

“Disability access” is sometimes being substituted for rigorous use of RC tools. We RCers are doing a disservice to people with EI if we frame the issue only as a “disability” or “access” issue and set our sights merely on adjusting to limits. Instead, our priority should  be to help people recover and regain their lives. Good counseling and lots of discharge are needed for this to happen.

Of course, we can’t know in advance the extent to which someone can recover from an illness. However, based on experiences with my own and others’ struggles with physical distress, I believe it is possible to recover from this kind of condition, or at least improve it significantly. Though the medical system has held out little hope for recovery from EI, and either blames people for inventing their own struggle or sentences them to a lifetime of limitations, we’ve found the hopelessness about many other kinds of conditions to be completely false. And people with EI have successfully used RC tools to tackle it, though this has required determination and boldness from both the people with EI and their allies.

People with EI need good counseling. This will enable them to ask for assistance and accommodations without alienating others. Allies also need good counseling, so that they can think clearly about the issues, take action where appropriate, and offer effective and sometimes non-permissive counseling for people with EI.

OUR BODIES AND THE ENVIRONMENT

We need to discharge confusions that motivate us to buy and use products that harm ourselves or the environment, and we need to ask more questions about unsafe materials.

The widespread use of scented products is indeed based in distress. All of us who sweat, menstruate, or have ordinary bodies have been given the message that we must do something about our bodies’ smells. Industries take advantage of how badly we feel about our bodies and bombard us with advertising that tells us we need to change our bodies in all kinds of ways, including how they smell. 

When we’ve gotten used to certain products and habits, it may seem difficult to change; being told to stop using them may feel like a personal intrusion. We need to discharge about our bodies, how they smell, and how we purchase and use particular products. This will help to reveal the underlying oppression and allow us to think more clearly about what makes sense.

DISCHARGING ABOUT SMELL, ALLERGIES, CHEMICAL SENSITIVITIES

“Smells are surer than sights and sounds to make your heartstrings crack.”—Rudyard Kipling.

We have strong reactions to smells, both pleasant ones (delicious food, the ocean, rain, trees, flowers, the sweet smell of babies) and unappealing ones. Bad and good smells can evoke intense reactions. Fortunately, we can discharge about smells!

First, let’s review some basic RC theory. Our bodies are always involved in whatever is happening around us, whether it’s hurtful or not. Our bodies may have been hurt directly by physical or sexual abuse, or indirectly from abandonment or neglect. Physical sensations accompany undischarged rage, fear, humiliation, or the frustration of powerlessness (for example, when we witness but are not able to interrupt oppression). Body-related sensations, functions, and processes are part of any distress recording.

When we become injured or sick, the new hurt restimulates old recordings of bodily hurts. This is not a bad thing, though “mental health” oppression may confuse us into thinking that strong feelings are a problem. Deep down we are eagerly hoping for a chance to discharge the old recordings, including their physical components. Restimulation offers a compelling opportunity to discharge them and regain our functioning, clear thinking, and connection with others.

However, too often we are stopped by the culture’s resistance to discharge and our own recordings of isolation. It becomes hard to discharge (or discharge enough), and difficult or awkward to ask for help and physical closeness from others. As a result, when the recordings of old bodily hurts are restimulated over and over, they can cause chronic physical symptoms.

When working on smells, allergies, and sensitivities to chemicals, it is useful to discharge on early body-related experiences. (In working on sexual hurts, we’ve learned that focusing on current sexual difficulties is confusing and unproductive but that discharging consistently on “the earliest memory connected with sex” yields increasing clarity not only about sexuality but about virtually all other areas of our lives.) We can ask each other, “What is your earliest memory connected to smell?” For those with EI, other prevalent feelings need to be discharged, including feelings of being in danger, being pushed out or excluded, or being physically hurt or assaulted.

RC RELATIONSHIPS AND RESOURCES

Discharging on illness works best in the context of a close, committed Co-Counseling relationship in which there is safety to get to difficult early material,1 especially early isolation recordings. The client needs the counselor to get in there2 with him or her, and benefits from having a committed buddy, challenging with him or her the symptom-related distresses. Small discharge groups that meet regularly work well; it is helpful to have several counselors’ points of view, as well as the extra attention.

People with EI tend to feel isolated. It is scary to have one’s spheres of activity becoming more and more limited. It can feel like one’s survival is at stake and like the only way to be safe is to change the environment. I’ve asked people with EI to tell me what it’s like for them. The following are some of the feelings they’ve described.

My world is shutting down.

I am in enormous distress, and no one believes me.

I’ll get sick if I’m exposed to any chemical smells, even faint smells.

I can’t participate unless the environment is nearly perfectly clean.

People value their perfume (cats, cleaning products, and so on) more than me.

I always have to accommodate others. It’s about time that they accommodate me.

It’s not fair that other people get to participate and I’m left out.

These feelings are frightening and debilitating. They also reveal distress recordings that can be discharged! It may seem harsh, but to try to protect people from feeling bad is not helpful. All people with disabilities and illness, including people who are blind or use wheelchairs, benefit from discharging about needing assistance or asking for accommodation.

RC events can be a great source of contradiction to distress, and discharge. They can also restimulate frozen needs3 of wanting to belong and wanting others to validate our need to be at the center and have control over what happens to us.  These frozen needs can get attached to the RC Community—a group of people who have offered to think well about us, just like we hoped our families would. Also, internalized oppression, of any kind, can make us feel left out, forgotten, invisible, powerless, or blamed for our distress.

We all have good ideas about how workshops should be. We may also pin chronic recordings on a workshop or the Community, thinking, “If only the workshop (or Community) were like this—then I wouldn’t feel bad, left out, or whatever.” This is the message of an old recording. This is the material that is wanting contradiction so that it can discharge. Expecting others to change the environment, as the only solution, is not addressing the distress or freeing us from the recordings that limit our lives in all situations, both in RC and beyond.

RC literature contains helpful information on disability liberation and approaches to healing and recovery from physical distress. See the Present Time Index, Complete Elegance, and Well Being.

WHAT ABOUT LISTS OF UNSCENTED PRODUCTS?

Do lists of unscented products inspire people to change their “scent behavior”? How many RCers take the lists to the store and purchase $30 to $50 worth of unscented products? Are people rinsing their clothes and hair in baking soda or cider vinegar before they come to a workshop, or carrying out other suggested practices? I’ve asked people what their reactions have been to these lists, and most people have been more puzzled or irritated than educated. Almost no one has changed their usual behavior. Several have said that they now avoid the person(s) who made the requests—“I don’t want to get busted4 for smelling.”

Why don’t the lists work? I think people change when they have a personal connection with an issue, and through relationships. And people usually need to discharge in order to change. (At one disability workshop, I asked people to sniff each other in a mini-session. (There was lots of laughter!) The lists seem to have the opposite effect of what is hoped for; they seem to make people afraid of people with EI, reinforcing their feelings of isolation.

FOR PEOPLE WITH ENVIRONMENTAL ILLNESS

For people with EI, the idea that discharge can help with the condition may not necessarily be welcome news. Reading an article like this may upset you because I am suggesting more effort—more counseling sessions. I do understand the despair and frustration. You have already tried getting more help. You have been told, “It’s all in your head, just get over it.” The ideas here may sound like more of that. Maybe you hoped to find some relief with more accommodation to your sensitivities. We can offer you some of that, but that’s not the whole answer.

Can you recover from EI? I don’t know. There aren’t yet a lot of Co-Counselors who are skilled in (and have relaxed attention for) body and illness issues. You’ve noticed this. We’re all beginners here. The good news about discharging is that you can’t lose: whatever time you put into it will benefit your life and your ability to think more clearly about this issue, as well as all others. Your decision to take leadership of your own sessions, to train your counselors to think more and more clearly about you, will serve you well—beyond whatever recovery you can achieve. I have confronted this issue as an ally for twenty years and have figured out a few things. We still have a ways to go. Help us think about you. Try some of these ideas in your sessions and write about what you learn. Imagine yourself, down the road, as a triumphant leader on this issue. There’s a chance it will happen.

SUGGESTIONS FOR ALLIES

We allies need to address our own oppressor material. People with EI have distresses that can seem “weird.” Their requests can seem “inappropriate,” “demanding,” or “bizarre.” We expect people to act “normal,” to have only (our own) familiar distresses. This is “mental health” and disability oppression.

People with EI are trying as hard as they can to make their lives work. They need counselors who are relaxed about and able to counsel people with chronic physical symptoms. We can learn together. Do people with EI demand too much counseling resource and effort from the Community? I think it more likely that counselors are being too permissive—and also perhaps holding on to judgments about someone with a difficult struggle, instead of fully reaching for the person.

We may not know how to proceed. It’s okay to say, “We don’t know yet. We have to discharge together and work on it.” We can stop pretending we’re clear when we’re not. Urgency to “fix it,” or eagerness to make sure people feel comfortable, are probably recordings. Try experimenting—for example, with “crowding the pattern”; offering to “fill a frozen need”; actively interrupting the recording; allowing the client to feel, and discharge, anger, fear, or disappointment. It sometimes makes sense to say no to a request for accommodation. Being liberal, kind, or accommodating can be settling for limits for our clients.

In our own sessions, we can ask questions like the following: What gets restimulated by this individual’s situation and requests? What stops me from being a top-notch and, if necessary, non-permissive counselor here? What is scary about saying no? What is annoying or difficult about making some changes in my use of scented products? What resources exist in our Communities to comply with requests to modify the environment? Is saying, “We don’t have the resources,” an automatic, unthinking response? Imagine yourself as sick and needing help—how would you want to be counseled? How do other factors (such as race, class, ethnicity, and so on) interact with the environmental issues and people’s requests for help? If we, as allies, promise to help devise a more scent-free environment, following through is part of the contradiction. What do we need to discharge on to be able to follow through?

PERSPECTIVE

A U.S. law, the Americans with Disabilities Act, uses a concept called “reasonable accommodation” to help employers and public facilities welcome people with disabilities. Reasonable accommodation means that the efforts to include people with disabilities and chronic illness must reflect an accurate assessment of the available resources. “Reasonable” is a relative term and so must be carefully thought (and discharged) about. 

The RC Community does have limited resources with which to meet people’s needs. Efforts to include people with EI need to be reasonable, given the resources of a given RC Community. Such efforts should not sap Community energies that are needed to also include people with other kinds of disabilities, and people of color, working-class people, and young people. Distress is operating when we prioritize the needs of a few individuals to the exclusion of others.

When we comply with requests for specific accommodations, we need to take into account all the other groups of people we want to include. Efforts to accommodate people with EI can alienate people of color and working-class people. While using scented products is probably based in distress and internalized oppression, it sometimes makes sense to accommodate such distresses until new populations have access to counseling resource. “Please do not wear scented products” on flyers is a simple way to begin to educate people. Any “enforcing” must be done with thoughtfulness and cultural sensitivity.

As RCers, we still “accommodate” our own and each other’s distresses in many ways. For example, until we get free of the recordings, we may continue to buy unnecessary things that we feel we “need.” Meeting such “needs” sometimes seems like a choice. Sometimes it feels essential for our survival.

A Community can decide to accommodate people with EI to the extent it’s workable, while also supporting their re-emergence and recovery. When we hope that some-one with EI“would just go away,” it’s a lost opportunity for our re-emergence as allies. Simply ignoring requests for accommodation does not “motivate” people with EI to discharge.

Thanks for taking this issue on.5 I think that as we discharge about it, it will seem less daunting and new solutions will emerge.


1 Material, in this case, refers to distress experiences.
2 Get in there means stay in close contact. with the client.
3 A frozen need is a hurt that can result when a rational need is not met in childhood. It often compels a person to keep trying to fill the need in the present, but the frozen need cannot be filled; it can only be discharged.
4 Get busted means get arrested by the police.
5 In this context, taking this issue on means deciding to work on it and think about it.

 


Last modified: 2019-05-02 14:41:35+00