Practical considerations in accommodation plans: By Barbara Rubin
For those with an environmental illness (past, present or future),our health status is largely dependent upon
the acts of others. This is how / why most of us became ill and a simple fact of our existence.
There are many 'wishful thinking' scenarios that go with various philosophies but the truth is that no
volitional act, or way of thinking, will alter the biochemical effects of poisons upon the human body.
The question, "'Will we be exposed to toxicants?" in this day and age is a guaranteed and resounding, 'YES!'.
There is literally no place to hide and tests are showing that people leading so called 'natural lives' in isolated areas, have not escaped significant
body burdens of poisons. All we can do is try to minimize voluntary exposures and do our best to remove the greatest
threats of involuntary exposure through negotiation with those around us.
Negotiations are essential if we are to retain the ability to work. That is the greatest determinant of wealth and all
that stems from it (e.g., housing, diet, medical treatment, etc.) A stable home environment is essential to health and
often, to keeping connections with family and friends. Without acknowledging this, many in our community are persuaded
to lay blame upon themselves for the actions of others around them. American society loves to pretend it is in control
of itself -- hence books like "The Secret," in which you are urged to believe that the 'right' form of thought
can miraculously alter physical reality or keep you insulated from people operating under their own set of needs.
It can't. The world isn't about us. While positive thinking makes life worth the effort that living requires, it can't
avert disaster because human nature is unpredictable. How can one even believe it is possible to predict the actions of
others, most of whom are invisible to us being 'up the corporate chain' in businesses or housing projects? We can never
fully understand the circumstances or constraints operating upon those around us, even if we know their names.
This post is to help those of you besieged by the media, friends, family and fellow sufferers from making the assumption
that toxic illness is 'your fault'. It is not. But it has become our responsibility to try to plan for what may happen
and that means accommodation agreements of some type for most of us. You cannot assume others will make rational decisions.
After all, if the world were a rational place, there would be no war, genocide, child abuse or poisons used in homes and
offices. As one friend recently put it, "We don't get to have the level of trust others do because we do not have the
same margin of error if they make a mistake with our health." Very well stated indeed.
The manufacture and sale of poisons is performed without reference to their effects upon us as individuals, given the fact
that most chemicals are untested for most significant forms of toxicity. The decision to apply poisons in our surroundings
is generally made solely on the basis of convenience, profit and need for immediate gratification (in terms of product
performance) by people using the products. Again, without reference to us, our needs, attitudes and actions. Even law.
Since poisoning is very rarely a personal matter between the sick person and the policies/actions of others, let's address
some of the principles of accommodation plans from a practical perspective.
Accommodation Plans: As someone who was permanently disabled because of violations of my plans within work and residential
settings, I can recommend you consider the following issues, when you design your own plans.
1. Yes, it is a legal contract. However, contracts are still basically plans and not a guarantee. You need to think about
what CAN happen versus what is expected to happen. People don't like to revisit plans later because they then worry that
further demands will be made at any point after the initial agreement. Prepare for the worst and hope for the best. Yes,
the existence of a contract infers 'good faith' among the parties. Unfortunately, violations aren't just an inconvenience
here as with most other business deals. The stakes are much higher than that so trust and 'faith' needs to be earned and
not assumed.
2. With whom are you negotiating? Is it the person who makes decisions about what will be done around you? Is it some
transient authority figure who may or may not give the information to the people who need it in order to make decisions?
You must communicate with the people at the top level, before the final steps are taken to make the arrangement legal.
3. Think carefully, if you are asking your employer or landlord for the impossible, such as control over the activities of
neighbors, fellow employees or customers. If you teach, can you realistically control what your students do with regard to
laundry and personal care products? Are you looking for freedom from pesticides but selecting an apartment located across
the street from a farm? On the other hand, it should be reasonable to expect that people involved in day to day building
maintenance can exercise restraint in product selections, given strict guidelines. Most maintenance issues are predictable
and therefore just requires a willingness on all parts to plan for it. Remember to consider all the possibilities
and not just obvious ones, e.g. negotiate for fragrance but omit the monthly pesticide spraying that may occur when you
aren't around. What you don't sense is no less hazardous to you!
Most importantly, when you negotiate for avoidance of highly toxic materials (e.g. cypermethrin), then don't take a plan
that merely promises they will spray those chemicals on your off hours. That is not an accommodation plan since it doesn't
meet your needs. If you get sick(er) from continued exposure, then your employer's needs aren't being met either. IPM is a
reality in many schools and businesses now so it is not an unrealistic request on your part. Similarly, many organizations
market green cleaning products without fragrance. These may be a very realistic clause in your contract, particularly if
you provide them or pay any differences in cost between conventional and preferred materials. If you can't tolerate
chlorine or ammonia, don't negotiate for their use during your lunch break if you will face those residues an hour later.
Know your preferred 're-entry times' for the items you cite in the plan.
Some of us are much too ill to be accommodated yet are forced into employment after being denied disability, Others must
work part time because disability payments are so inadequate. However, these lists exist to help people figure out what
CAN be accomplished within certain constraints. But don't negotiate for an accommodation that isn't going to keep you
functioning because nobody wins. Just because an employer or landlord agrees to make surface changes in policy
(e.g. spray pesticides on Friday after you leave for the weekend), that doesn't mean it is a worthwhile change if your
exposure is still guaranteed on Monday. Try interviewing non-toxic IPM companies so you can recommend them to an employer
whose traditional company only knows one way to do things. Learn about the healthy school initiatives that helps schools
choose better cleaning products. If people in charge are naturally at a loss as to how to proceed on these things, you
take the initiative to show them how it can be done for the benefit of all concerned. All they can do is say no.
If you say yes to anything else, you may be unable to work soon after you begin your new job or may have to leave your new residence very shortly and face homelessness.
4. Can you risk a severe exposure from either accidental or purposeful suspension of your plan? Is disability a real danger?
You must assume the plan will be violated at some point in time and determine the nature of your risks. If the risk is too
great because you are very vulnerable or already quite damaged, consider ANY accommodation to be a short term measure you
are negotiating, in hopes that you will eventually find a way to live or work in an environment more fully under your own
control.
I thought my written contracts were solid but didn't recognize that people who never met me were making decisions without
regard to anything except profit and convenience. However, the fact that they did so in SECRECY, indicated an understanding
that their actions were wrong. The contract was of no use to me when the results were loss of career and total disability
shortly thereafter. Back then, I never realized just how seriously I could be damaged. However, having learned it the hard
way, I feel it important to convey that information to others.
5. Can you keep emergency equipment nearby such as oxygen and masks, etc., in case of unexpected exposures? Many of us fear
visibility, yet the 'invisible' nature of the illness prior to advanced illness/damage is one that ensures others won't
always take our needs seriously. "Oh, she's allergic and will sneeze, or maybe get sick and go home for the day
with a migraine." You ought to have some precautions available which are also visible reminders of the realities
that led you to request accommodations.
6. All accommodation plans must be in writing. The realities of our society are that if it isn't in writing, it never
happened. You will most likely be required to provide a physician's note of necessity with relevant diagnoses warranting
the actions requested. Be aware that the diagnosis, "MCS" entitles you to accommodation but it can alter the attitudes/commitment of those accommodating you depending upon their view of the condition. If they look it up, they will first read authors on psychological aspects of that disorder. It may lead them to be less firm in their resolution to accommodate you ("What s/he doesn't know won't hurt them.") So consider your other diagnoses which refer to specific symptoms like RADS, asthma, seizure disorders etc., over the more nebulous labels, if possible.
7. Enforceability: Know your options if things 'go south'. If you are ill for known or unknown reasons and have reason to suspect you are not being dealt with honorably, be prepared to assess your
environment for hazards. You can use both medical and environmental testing protocols when needed. Learning how and when
I was lied to didn't prevent me from becoming disabled because I waited too long, trusting those around me. But when
I finally assessed the situation, I found the chemicals and got the necessary tests to ensure future survival. If you
are smarter than I was, you will catch violations earlier than I did and either leave or remedy the situation BEFORE
permanent disability occurs.
8. It is up to you to ensure that all persons who need to know about your contract actually hear about it. Many violations
of plans occur due to the actions of people you don't even know. Learn the names of everyone connected with your setting
and slowly make yourself and needs known to them in appropriate language/detail. Only you can ensure that ignorance will
not be an excuse by anyone in your vicinity for harming you.
That covers the 'art' of negotiation. Next comes the science by which we can actually determine our needs in a specific
environment and monitor success or failure there. Environmental testing has enabled me to prove changes in my surroundings
which explained sudden downturns in my health. This testing also showed landlords and employers things they weren't
aware of and needed to know for their own well being. More importantly, unless the average consumer (remember once when
we were actually citizens?) learns just how many poisons are around them daily, the marketplace will not change for the
better and lead to prevention of our illnesses. Just as the 'germ theory' of disease was ignored until germs could be
seen, so industry hides its ingredients or just promises 'there isn't enough poison in MY product to matter'.
I would like to see all of us put together a pamphlet of toxicologists and laboratories useful in the testing of our
possessions and/or environments. The recognition of just how contaminated things and places become is all that will
ultimately change consumer purchasing choices. Otherwise the company line is, 'There isn't enough in my product to hurt
anyone." If anyone wishes to work with me (sporadically) on that task, email me at agasaya @ yahoo.com
Regards,
Barb Rubin
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Understanding & Accommodating People
People
with Multiple Chemical Sensitivity in Independent Living
by Pamela Reed Gibson
James Madison University |
