Travel Lodging and Airbnbs

 

It was my first official, formal trip in twenty years (not counting road trips and camping adventures) and I needed a place to stay that was fragrance-free safe. Hotels are impossible for me due to the offgassing of new furniture, laundry detergent smells, and toxic cleaning supplies used to de-stink a previous customer's stay. What do I do?

I considered driving and camping at my destination, but decided driving would take too much time and since I sold my van months ago, sleeping in a tiny car would not work. Besides the weather in Tucson was expected to be in the 90s. Nope.

I started searching online months ago. Would an Airbnb work? There are many posts and comments from people searching for fragrance-free Airbnbs or any kind of private accommodation that would be willing to be nontoxic. It seems this search is very difficult. 

Airbnb has a filter for number of rooms, number of guests, number of bathrooms, other amenities, but no general word search options. Their website even has an "Accessibility" filter so people with disabilities are able to search for wheelchair access or other helpful features. No mention of chemical sensitivity which is an official disability according to ADA. It seems they are excluding a whole group of disabled people who need fragrance-free accommodations.

I got creative and joined several online community groups and posted the question, "Does anyone know of an Airbnb that is fragrance-free?" Some of the responses were along the lines of, "NO." Or "Good luck with that!"  One woman who was an Airbnb host offered to become fragrance-free just for me not understanding that would involve washing her linens at least twenty times to get the laundry stink out of them for it to be safe enough for me. I really had little hope, but I persisted in my search.

Fortunately and miraculously, one group member was an Airbnb host who belonged to an Airbnb host support group. She posed the question on her group and gleaned a whole list of people who claimed to be fragrance-free! But were they really? We all know unless people are chemically sensitive they often don't even know what fragrance-free means.

I selected one that was a small casita for one person. The host seemed the most aware of fragrance-free cleanliness and I posed questions regarding cleaning and personal hygiene products as she did not have these things featured on her listing. Yes, she uses only vinegar and hydrogen peroxide for cleaning, free and clear laundry detergent, and provides fragrance-free and nontoxic personal hygiene products. Hmmm...OK! I didn't ask how old the mattress was to assess if it would offgas chemicals nor what kind of mattress. I didn't ask if there was any remodeling, new furniture, or new paint? I know it would be a risk, but I did what I could to make sure it was safe and booked it (no refunds!) I also purchased the optional travel insurance in case of sickness as I hoped if the space made me sick, I could leave and get a refund. (If Airbnb doesn't even recognize chemical sensitivity as a disability, it might have been a struggle to convince them had I actually became violently ill because of the space. I think a lawyer might have convinced them....)

I arrived and got into the casita. There was a second, adjoining, unoccupied Airbnb space, but no other customers were staying while I was there. The casita smelled musty! What was that? Formaldehyde? Bug spray? My lungs started hurting. Oh no, this is not good.

I noticed the air conditioning was not on and this was controlled by the host so I requested she turn it on. She suggested I open windows and run the ceiling fans on high as well. I left and began my tour of Tucson praying when I returned the air would be tolerable. I asked her if I could have access to the swimming pool since other tenants weren't there. I did not explain why I wanted access. It was not to swim, but as an option should I be unable to stay overnight in the casita, I could just sleep out by the pool in a lounge chair. I was not excited about sleeping outside with lizards, snakes, and other creepy crawlies, but it was better than suffocating. (The rental car had a slight smell of "new car smell" so I knew I would not be able to sleep there.)

I apprehensively returned a few hours later and the casita aired out magnificently! Whew! Relief! I noticed as I looked at rentals in Tucson many had the same musty smell and I am now assuming it might just be the way Tucson is when air-tight and locked up. The host did confess she uses ozone, but said she didn't use it on the casita. I do wonder what her pest control procedures are, but I didn't ask. I hoped for the best and made the assumption if she was that aware, she probably wasn't using toxic pesticides like so many in Tucson do. 

The mattress was a natural latex that was a couple years old. Incredibly comfortable with no smell at all! Her linens smelled so clean, even cleaner smelling than my own!

I have heard some hotel chains provide "hypoallergenic rooms". I stopped into the Hyatt Place and asked hoping they would let me smell one to see how safe it might be. No, they did not have "hypoallergenic rooms". Oh well. They lose my business!

I can't even express how happy I was it all worked out!! But expensive...it's not cheap to stay in an Airbnb and it was the highest expense of my trip. Did I pay extra for nontoxic accommodations? Maybe, but this is typical. It's expensive to be chemically sensitive!

Employment Accommodation or PAY!

A company called Caltrans was sued by a MCSer for failing to accommodate his chemical sensitivity disability. His supervisors called him an "idiot" and fellow employees would harass him by placing perfumed items at his work station. He was awarded $3 million dollars! Then the judge stated he thought that was excessive and believed the jury's award to be based on passion and prejudice and reduced it to $350 thousand. WHAT? This was appealed because the dumb-shit judge didn't give any evidence as to why it should be lowered, and he is now back to being awarded $5 MILLION DOLLARS. That's the summary. You can read the whole article HERE

Hooray for justice! Finally! This sets legal precedent on disability accommodations. Maybe we'll finally be taken seriously.

I sure wish my lawsuit so long ago would have gone so well. I was told not to bother that the judge would throw it out of court. This guy must have had a much better lawyer than I did!

Christmas Festivals

Christmas festivals are typically filled with toxic stink so I normally don't even attempt to attend one. However, this year I found out the local bead shop has one every year for their artist customers and I just happened to be in the store at the right time. I was excited! Beads are one of the few non-toxic art supplies and very popular with chemically sensitive creatives.  Lately I've been using beads for the mosaics I'm making. I was looking forward to a whole festival of bead-themed art project for ideas. I love seeing what people do for fun. Unfortunately when I asked more questions I was told the event is not just for beadwork, but any homemade project. Hmmm...I think most people would be more excited but the thought gave me pause.

There were a few booths located on the lower level. I'm sure they were run-over due to overbooking as the space was a bit of an after-thought, a messy storeroom area haphazardly organized to accommodate this handful of artisans. There were tables of baked goods, ceramics, hemp sculptures, and cards. Nice, non-smelly. I stopped and chatted with the artists and let them tell me all about their processes. I regret the baked goods were not gluten free. Darn. I perceived this as a preview and it gave me hope.

As I made my way to the upstairs location, a very small sign at the top caught my eye. It was a copy of an email but printed in big bold letters at the top was the heading, "ATTENTION: READ THIS".

OK. Ever the complaint one, I hesitated and thought, It's probably something not so important as it is implying, but at that point my curiosity got the best of me. The email was addressed to artists with booths and said something to the effect (paraphrasing):

Please remember to be fragrance-free as many of our employees are chemical sensitive and would appreciate it! Thanks!

Whoa!! Outstanding! I was so hopeful for this event. I cheerfully walked through the door and was hit by an avalanche of toxic stink. It took me about thirty seconds before I stopped stubbornly fighting the desire to continue, turned around, and high-tailed it out of there. So disappointing.

I wrote to the store and requested next year they put the non-smelly booths downstairs, perhaps those focused on beads since that is what their store sells, and leave the toxic, poisonous stink upstairs so everyone can enjoy. Am I asking too much? I told them if it's extra work, I'd be happy to volunteer to help.

Their response was...no. LOL. Hey, it never hurts to try. In fact, I don't know if they knew about that sign. Perhaps a rogue chemically sensitive employee hung it? I hope I didn't get anyone in trouble....

Independent Medical Examinations

My attorney scheduled me for an "independent medical examination" at the request of the evil opposing counsel.  At the time I had no idea what an IME was, but I was petrified.  The recent experience of jumping from doctor to doctor hearing perfume doesn't make people sick or perhaps psychological counseling would help? made the thought of visiting a doctor specifically chosen to destroy my credibility just a little unnerving.  My attorney offered little support other than informing me it was their right and by law, if I wanted to play the legal game, I had to comply.

On top of the idea of impending humiliation, it was an appointment with an allergy doctor. Having had numerous allergy doctors refuse to see me because MCS wasn't an "allergy," I wondered about the opposing counsel's game plan. What was their agenda? I was haunted by the fact that this doctor's name sounded vaguely familiar.  Had I read about his opposition to MCS somewhere? Is he the evil one? Am I being sacrificed for the sake of legal clarity?

I asked my environmental medicine specialist if he knew this doctor.  He told me he did, very well, and had some rather passionate discussions with him on the existence of MCS.  I was informed that this man would not, in any way, help my case, but more likely damage it as he believed MCS is all in our heads.  More panic.  I asked my attorney if I could refuse or somehow request another doctor since this one was already biased.  Nope, they get to choose who they want.  This is part of the game. Great.

The following is a list of suggestions, tips and advice on how to survive the IME game.  It's based on my experience with a touch of panic-based research, confidential disclosures from my attorney, and a lot of reflective opinion.

1)  An independent medical examination (IME) is a standard, common procedure in legal medical cases.

2)  Legal representatives or insurance companies have the right to request an IME for  legal proceedings.  Those that request will pay the costs.

3)  The party requesting an IME will choose a doctor who is knowledgeable, yet biased toward their own agenda, therefore, an independent medical examination is anything BUT independent. This is normal, expected and understood by all parties as part of the legal process. Requesting another doctor is permissible, however, highly discouraged and only if there is a very good reason.

3)  Request the "scope and sequence" of the IM examination from your lawyer.  This is your right.  It will give you a very vague idea of what will happen, but at least an idea. Knowledge is power.

4)  Make it clear to your lawyer the doctor's office must be fragrance-free.  In addition, if your health is compromised by auto exhaust or other environmental factors regarding the commute, request to choose the time and day of the appointment.

5)  Let your lawyer know you will not subject yourself to tests that will compromise your health, i.e., allergy tests, inhaler tests, any procedure using chemicals that may produce symptoms.

6)  Do not take any documents or notes to the doctor's appointment unless your lawyer instructs you differently. If you do, the doctor may ask to see them and make note of them in his written assessment. This may end up as evidence. You may take blank paper and pen to take notes if you desire. Be prepared to eat them.

7)  Avoid taking friends or relatives with you. The doctor will ask your friend's name and write it down as part of the examination.  Subsequently, the opposing counsel may subpoena him/her as a witness and require disclosure of conversations before and after the appointment regarding the appointment.  If possible, take your attorney's secretary, legal assistant or paralegal and ask him/her to take notes for you. (I believe they will be documented, but are bound by attorney-client confidentiality?  Don't quote me.)  However, don't make the mistake of feeling secure with this support. Although your lawyer's legal assistant may be instructed by your lawyer to support you should you refuse a procedure that you feel may compromise your health, he/she will usually not converse with the doctor.  And, this is not T.V. law - don't expect them to jump up and "oppose" questioning in a legal capacity. The legal assistant is only there as a supportive witness. Reminder: Don't let your guard down and feel too safe with their presence.  If a legal assistant is not provided, take a spouse who cannot be required to testify, or a very, very close friend, but inform him/her of the consequences and subsequent involvement (they may be deposed at a later date...). Again, if this support distracts you from concentration, go alone.

8)  Arrive at the doctor's office on time.  If you should arrive early, do not discuss your situation or case in the lobby or in the office as you wait. Assume there are spies. Assume the lights have cameras and the plants are bugged. As I waited to be called for my IME, there was a woman sitting in the lobby dressed in a tennis outfit pretending to read a magazine. My appointment was about an hour late and she was waiting the whole time. Odd. I kept my eye on her. No one else was in the lobby. The legal assistant and I talked about her children and allergies. When I was called in for the appointment just as I was walking in, out of the blue she said to me from behind, "You know it isn't that bad." Surprised she was acting like she knew me or she had any business listening to our conversation I replied, "How would you know? You don't even know me." Even though I had no idea what she was talking about.

9)  Expect to be asked every little detail about your health history and your family's health history.  These questions will reappear two or three times throughout the appointment formatted differently each time. Know your history and the scope of your medical records involving your case. It is highly advised to be honest, however, remember you are not under oath and are not obligated to disclose all.  The doctor doesn't need to know your great aunt's history of gout. Also, don't refuse to answer questions or it will be documented and your honesty will be, therefore, suspect. Be pleasant, kind, and appear forthcoming, honest and eager to please at all times. If you choose not to answer a question, a puzzled look and, "I don't remember" will usually suffice. Resist the temptation to say, "It's none of your damn business" or "What does that have to do with anything?"

10)  If you don't understand the question or the terminology used, ask for clarification. This can get tricky depending on their agenda. For instance I was asked "Do you have panic attacks?"  Now I could have said, "Well, yeah, I had one when I heard about you."  Unfortunately, I didn't know what a "panic attack" was so I chose to answer as clearly as possible: "When perfumes and chemicals stop me from breathing, I sometimes feel panicky."  He continued to repeat, "But do you have panic attacks?"  I should have asked for a definition and my look of bewilderment went ignored, but I didn't so I couldn't decisively say "NO, I don't have panic attacks".  It was as if he waited, amused, for me to hang myself with my words. It went down on my evaluation that I suffer from panic attacks, although now having researched the definition I know I've never had a panic attack in my life.

11)  Qualify your specific MCS symptoms with "...if exposed to [perfume]."  For instance, "Do you get headaches?"  If you only get headaches when you are exposed to perfume, say so or it will be noted "suffers from headaches" regardless of the cause.  "I get headaches when I'm exposed to perfume." "My ears often hurt...when I'm exposed to perfume." "My joints hurt...when I'm exposed to perfume." Don't assume the doctor is making the assumption that your symptoms are caused by chemicals because he/she won't.  The doctor is finding ways to discredit your legal testimony. This is the IME doctor's job.

12)  Expect the doctor to disagree with you.  From what I understand they are supposed to appear unbiased, but arrogance often supersedes.  If he/she says with a chuckle, "Perfume doesn't produce asthmatic symptoms, that's ridiculous." Don't scream and lunge for his/her throat, just smile calmly and wait for the questioning to resume.  Assume all your reactions and your comments will be noted for the record.

13)  When the interrogation part of the examination is finished, the physical examination begins.  Be attentive.  If the nurse comes at you with rubbing alcohol/Freon-based inhalers/allergy test injections and you know you will react, refuse.  The nurse may ask you why.  My repetitive response was, "I am chemically sensitive and that will compromise my health."  Don't allow them to make you feel intimidated with bewildered looks or I need to go discuss this with the doctor threats. Always assume they don't believe you have a problem and you have to protect yourself.

14)  When they release you, smile and leave.  If the receptionist asks if you would like to make another appointment, smile and say, "Not in my lifetime." Treat yourself to something special so your blood pressure will go back to normal.  The end.  You survived.

The real assessment of survival is the doctor's written evaluation which will be mailed to the opposing counsel with a copy to your lawyer and a copy to you from your lawyer, if requested. The document may be swayed with subliminal vocabulary such as she THOUGHT she was sick, she PERCEIVED..., she ALLEGES... and/or will include blatantly incorrect details formulated by the doctor's assumptions, but it's the legal ramifications of his findings that are the most valuable.

I was somewhat fortunate as this allergy doctor found me to be in need of psychotherapy and my psychosis was "reinforced by her unorthodox health perspectives as well as by unorthodox health practitioners".  He concluded, "These individuals, once they come to believe that they are being harmed, are very difficult to treat.  Early on, sometimes psychotherapy is beneficial, but once the belief becomes ingrained, it is hard to dissuade them."  It's still hard for me to believe that educated physicians in this day and age are still so narrow-minded. And, how is an allergy doctor a legal expert in psychiatry?

The written assessment wasn't as bad as I expected.  He actually acknowledged because of my psychotic belief that perfumes were harming my health, I would benefit from a fragrance-free environment. Also, my lawsuit was focused on disability and lack of accommodation and this IME only supported the fact that I was still disabled (although psychologically rather than physically) and I should have been accommodated regardless. He also said I was pleasant. Ah ha! His assessment of me might not have been so glowing if I had grabbed him by the throat  when he started whining about the inconvenience of his Jaguar being in the shop at the same time he was vacationing in Prague. There are advantages to being non-violent.

For the MCS patient who has experience with useless, conventional doctors, facing yet another skeptic can be quite unnerving especially one hired to discredit your very existence. Unfortunately, IMEs are part of the legal hoop jumping process. Think of it as an elaborate game and winning the game means more support and recognition for multiple chemical sensitivity.

Accommodation Activism

I once met a chemically-sensitive woman online who believed she had the right to work at the career of her choice and she had the right to accommodation where ever she went.

OK. I can understand that. In a perfect world, that's how it would work.

She was an office worker with years of experience and education in her field. Unfortunately, every office she went in had employees who wore perfumes and other scented products, copy machines, felt pens, janitorial products, etc. Did this stop her? Nope. She'd apply for the next job, get it, start having health issues, and immediately demand accommodation. If it was slow in coming (and it's always a slow process), she'd contact the EEOC and file complaints. Subsequently, she'd have to quit, go back on disability, lay low until disability ran out, and then she'd start the cycle again.

I have to applaud her fortitude and her desire to affect change, one office at a time, but I don't know where she got the energy to constantly want to fight someone. I don't know why she'd want to put herself in a situation that would compromise her health, over and over and over again. I don't know where she found so many jobs that didn't do a background check or required references from all her previous jobs.  Certainly she'd eventually run out of offices to harass. Well, last I heard she moved to another city.

I'm not sure if she was in denial, stubborn, ignorant, or just an extrovert. I suggested many times to find another career or find a way to work from home, but she claimed she had a right to work in an office like everyone else.  Hey, I've worked in an office. What's the attraction???

OK. Whatever. Have fun. It wouldn't be my kind of fun. One bad accommodation experience was enough to last me a whole lifetime.

Accommodation Denial

Each year brings more understanding about multiple chemical sensitivity which affects the implementation of fragrance-free polices in workplaces and schools. Unfortunately, those organizations with policies are still the minority forcing most chemically-sensitive employees or students into situations where they need to request accommodation. Accommodation may be denied depending on the situation. I'll share my denial experiences, but keep in mind, times are changing and accommodation and workplace flexibility are far more prevalent than they were ten years ago.

I was a new teacher/librarian at the school that poisoned me. Most teachers wore perfume. The principal wore cologne. Everyone sprayed air fresheners to camouflage the stink of mold, bus fumes and new carpet glue. As a librarian and specialist instructor, I saw all staff members and all students every week through scheduled visits. Students would come up to me, point their little wrists toward my nose and say with pride, "I smell just like my teacher." Oh joy.

Around the end of the first month of teaching with my health declining rapidly, I casually mentioned the fragrance issue with the principal as we stood out at the buses. I made an appointment with him to discuss the situation in more detail. He seemed like a really nice guy. I was convinced if he would simply request the teachers and staff to not wear fragrances, I'd be fine. I'd at least survive through the end of the year when I'd find another job. This was my fifth teaching position in my career and the only one that has ever affected my health.

After hearing my concerns instead of being supportive, the principal informed me he didn't have to accommodate me because it was my choice to work there. I wasn't required to stay. I can leave anytime I want. Therefore, accommodation wasn't a requirement. I knew his line of reasoning was backwards, but he was never very smart and usually in a perpetual state of confusion. He somehow skewed disability information or tweaked it for his convenience. I didn't argue because I liked my job and didn't want to lose it.  He also said I wasn't to discuss it with anyone because he didn't want to start a "perfume war". Before the end of the meeting after much coercing, he agreed to look into my problem and get back with me later in the week.

At first I had hope, after all he said he'd look into it. Not about to take anything for granted and since I was the school's librarian skilled at research, I started doing my own research and by the end of the week I had a stack of papers a foot high plus a few books on schools and associated environmental health issues. At the end of the week, having not heard from him as he was trying to avoid me, I literally cornered him in the hallway and asked what he found out. Nothing. He couldn't find a thing on the subject. Oh well. Too bad. As he skirted away as quickly as possible, I followed carrying my stack of research into his office and promptly set it on his desk. I said as sweetly as I could stomach, "Here is the research I did. I'm sure you'll find it very interesting." [You ignorant asshole.]

Life went on. I did everything possible to fly low and avoid being a target. Teachers were on probation during their first year at a new school district. Not only was this job on the line, but my whole teaching career. You don't ever screw up your first year anywhere or you may never work again. As the school year progressed, I got sicker and sicker. It was impossible to keep a low profile when I was required to work directly with smelly people, go to staff meetings, sit in on parent conferences, go to social events, be on committees, and perform the basic duties of a teacher. I even had to use the children's restroom because the staff bathroom was air freshened constantly. Teachers aren't allowed to use children's restrooms due to child sexual abuse laws, but I really didn't have a choice. Restroom breaks became very stressful. I continued to send the principal copies of my research and medical evaluations, including letters of accommodation from various doctors. He continued to ignore me.

Seven months later, I could see the finish line...and then my assistant was promoted to another position. She was going to be replaced. I panicked. Suppose they hire someone who wears perfume? The day she gave notice we received a district newsletter and on the front page was an article for a law firm that specializes in education and employment law. Come on in for a free consultation!

I explained my situation to the lawyer and asked how I might be able to legally request accommodation to assure my new assistant would be fragrance-free. He explained the hiring committee must state at the interview that the position is fragrance-free. If this isn't done and the new perfume-wearing employee is asked to not wear perfume on her first day, she can sue the school for discrimination. How backwards. He offered to write me a letter of accommodation to clearly explain how this hiring practice is implemented. I declined and told him I'd rather write my own as it would be less threatening. He told me exactly what to include.

I sent the letter to the principle via email the next day. Unfortunately, in order to substantiate my information on hiring procedures for my new assistant, I mentioned in the letter that I had met with a lawyer who gave me advice. I thought I was being helpful in order to save time in case he was wondering where I got the information. We were due to start interviewing for the assistant position in a couple days.

Within an hour the principal stormed into my library and cornered me near a bookshelf where I was working, demanded to know why I went behind his back to seek legal counsel when it should have been addressed informally with him so he could take care of it. He was furious. If he wasn't whispering, he would have been screaming at me. My assistant told me later she was watching us, suspiciously, and on the surface everything looked fine, but she had a bad vibe.

I responded to him that I had INFORMALLY addressed the situation over and over and over again for the last seven months and that it had INFORMALLY been swept under the rug and I had INFORMALLY become so sick I could hardly function. WHEN WAS HE INFORMALLY GOING TO DO SOMETHING? I was also whispering, professional, and calm, but I was really furious. After all those months of being sick, stressed out and playing nice it was all I could do to control the rage. He wasn't impressed at my new assertiveness, but he said nothing. He stormed out of the library only to return at the end of the school day to inform me, very formally with the assistant principal in tow as a witness, when my performance evaluation would be held.  I should bring my union representative. I recognized this was the beginning of the end. He was taking steps to get rid of me.

At the performance evaluation my union representative called in sick. He was a useless piece of shit anyway so it was no great loss. The principal told me I didn't get along with anyone, I didn't go to staff meetings, I was lacking in interpersonal communication skills, and I was going to need to complete training courses to increase my productivity to make me a better team player. I was put on notice. If I didn't comply, I would be fired. What was really funny is I had already taken the classes he was requiring at another job. When I informed him, he gave me a dirty look. It really didn't matter what I did, he wanted me gone...this was just the first step.

I should have asked if I was such a horrible employee why he waited seven months to have this meeting. I probably should have asked why chemical sensitivity was never mentioned as the cause of most of his accusations. I didn't. I had had it with his incompetence. I smiled sweetly and pretended to be compliant.

Later than night I returned to the school, packed up all my belongings and walked off the job with no intention of returning. This wasn't a rash move on my part, although it no doubt surprised everyone. I had been meeting with a union representative outside my district who was very experienced and knowledgeable about employee rights, unlike my own union representative who told me there was nothing he could do. She told me if the environment was poisoning me, and no one was taking any steps to rectify the problem, how could I possibly justify staying? In fact, by struggling to maintain my position and continuing to stay in an environment that I claim is killing me, it sends a message that the situation can't be that bad. Good point.

What do you do if you are denied accommodation?

First step is to quit your job. Find something less toxic for income. Find an employer who will accommodate you. Work from home. Is this easy? No. Is it necessary to maintain some glimmer of health? Usually. Change is difficult anyway, but change with income loss is even harder, sometimes unfathomable. Do you really want to be in a situation where you are being poisoned on a daily basis? Watching what's left of your health disintegrate with each new exposure? Don't hang on for months or years hoping for a miracle. Find a job counselor to assess your employable skills and make some changes. What is that saying? When a door closes, a window opens? By being courageous enough to change, you might just find the career of your dreams.

The second step is to sue the asses off the incompetent idiots who refused accommodation. Most understanding of multiple chemical sensitivity is due to lawsuits. Employers don't want to be sued.  Each lawsuit develops precedent which promotes forced awareness and inspires a serious look at accommodation policies, managerial training, and employee handbook procedures. Lawsuits are not just about winning money. They are about affecting change and being taken seriously. Discuss your options with an attorney to ascertain if you even have a case. You might not.  

Accommodating Situations

Every time a chemically-sensitive person asks for accommodation they are affecting change by sharing information and creating awareness of this environmental health issue. In most situations when I have requested accommodation, people have been eager to understand and do what they can to assist. Usually the accommodation is out of the ordinary as well as above and beyond the call of duty. Other times it is minimal due to policy constraints, yet heartfelt. At all times, it's appreciated.

My requests for accommodation always involve trying to avoid the stinky habits of others. Usually I'm begging for a fragrance-free environment either by requesting that others are fragrance-free or brainstorming options so I don't have to be in the same vicinity as the stinkers. The following are some of my more positive experiences requesting accommodation:

Employment I worked for a major retail grocery chain in the customer service department of the corporate office. We were in the basement with no windows and since we were in charge of employee bonuses, our office was top secret and restricted. The doors were never allowed to be unlocked, let alone left open. I worked with twelve fragrance-addicted women. My third week on the job I couldn't figure out why I was getting horribly sick with some strange flu that would go away on the weekends. Finally one Monday as I gasped for air I finally realized was reacting to the overabundance of stink everyone freshly bathed in that morning. Since it was a new job, I was really afraid to say something, but I didn't have a choice. I couldn't breathe and I couldn't open a window. I told my boss, who told her boss, who came charging out of her office, called an impromptu meeting on the spot. She demanded right then and there that everyone stop wearing perfume and made it really clear this was an issue of productivity and teamwork and not personal preference. She even tried to keep the identity of the troublemaker out of it, but that was a little hard to do in a small office. Awesome.

Much later, I was promoted with this job and moved to another state to run my own customer service office. I inherited an assistant who smelled like a French whore. I requested she not wear fragrances to work and she continuously ignored me. I eventually asked my supervisor what to do. I had no idea we had a legal department in the corporate office! I went in for an appointment and the attorney for the company was very clear: If the employee was asked to be fragrance-free by her supervisor, she really doesn't have a choice. They don't want me suing them for lack of accommodation. This was in the early days when my chemical sensitivity was just getting started and it gave me an excellent view of my legal rights from the corporate perspective.

I also worked at a bookstore along with a large staff of silly, minimum-wage grunts, several who wore perfume. One stupid little girl bathed in cologne and laughed like a maniac every time I'd start having a reaction. Management gave me not only my shift of preference, 6am to 10am before the store opened and smelly customers arrived, but also allowed me to do special projects from home. In addition, if for some reason I had any problem in the store, I could leave immediately. Eventually my tolerance petered out and my hours started getting cut back. This was mostly my choice. A few months later I applied for unemployment and I got it! Management didn't even contest it although I did find out later I should never have qualified for unemployment since I had a health condition that prevented me from most employment positions. This experience was an example of management going above and beyond the call of managerial duty. I was a very ineffective employee every time I walked off the job and should have never stayed so long. They still accommodated me to the best of their ability. I'm pretty sure they collectively sighed with relief when I finally quit.

School  One of the colleges I went to has a fragrance-free policy. When I was a student, I wasn't chemically sensitive, but years later I appreciated the forward-thinking atmosphere of their educational environment. This school has been on the cutting edge of everything so it's not surprising. I'm not aware of the steps they take if a student or faculty member wears fragrances to school. I think every public educational institution needs to follow their example.

Jury Duty  At some point you may be summoned to serve your citizenship responsibilities and sit on a jury during a courtroom trial with eleven other possibly stinky people. They send you a notice of when and where your presence is requested with a statement that reads "If you are not able to serve on the day of a scheduled trial, you must contact the Court before trial begins to see if you will be excused from jury duty for that day."  If you need to be excused, you must write why on the line provided. I actually have a form letter I've been using for the past ten years as I get a jury duty summons about once a year from the county and every now and then from the city. I list chemicals and scents I cannot be around, claim disability according to law, and offer accommodation options. I attach the letter of accommodation from my doctor which supports my claims and anxiously await their response. Some courts tell you they will notify you if you are excused; other courts tell you if you are not excused they will contact you. I always sweat this out although I have no idea how they could accommodate me in a room full of people. In my letter I have suggested modern-day options like close-circuit television or online streaming which I think sounds very technologically plausible, BUT according to the law the criminal has the legal right to see the jury, or some such nonsense, so a juror's presence is mandatory. I've always wanted to be on a jury, but missed my opportunity.  I have yet to be required to show. If they ever do require my attendance, they'll have to provide suitable accommodation and, truthfully, with my letter spouting off disability laws, I doubt if they want anything to do with me.

Volunteering I volunteer at my local food co-op doing grunt grocery work: face shelves, stock produce, participate in membership meetings, etc. One of the reasons I got involved is because it affords me the luxury of human contact which is rare in my daily life. The co-op's philosophy is all about health so most employees and customers don't wear perfume and other scents. The shoppers are a little smarter than the average conventional grocery store shopper, but every now and then one comes in reeking and I move to the other side of the store. Management also claims they have a fragrance-free policy, although they can't control shoppers and before I came they didn't attempt to control the employees either. There have been some employees who use smelly hand lotions, etc., but as a member of their volunteer staff I have casually made comments about the stink and how it affects the chemically sensitive. I have become their chemically sensitive disabled person representative. I know they talk to employees because formerly-stinky people are now no longer stinky. Hooray for affecting change, even in small increments! Not all volunteer opportunities will be so accommodating, but I selected an environment that was already health-oriented with inclusivity as one of their mission statements. It's best to pick your battle wisely.

Conferences and Meetings I belong to a professional association that posts their fragrance-free policy for every meeting and conference. I was the one who requested this years ago when I first joined, but at the time many other members thanked me because they, also, had issues with perfumes and other fragrances. Unfortunately, all they can do is post it. Because this is considered an extra-curricular activity that doesn't not affect my livelihood and is not mandatory for existence, they can't enforce it. Although I know they have turned smelly people away, I think if the person wanted to make a stink (pun intended) about it, he or she could probably sue for discrimination. Most attendees have no idea what fragrance-free means. At one conference I had a smelly woman sit right next to me. I asked her if she read the fragrance-free policy and she said she had. I asked her, then why did she stink. She claimed she used Ivory soap and according to the commercials it's safe for babies so it must be fragrance free.  Another person with the crazed look of a drug addict in need of a fix came up to me and demanded to use my hand lotion because she couldn't use hers and it was my fault. I don't use hand lotion so she was out of luck. There have been many instances where I have had to move my seat closer to a door or leave. Most often I just get so fed up with the ignorant people I opt not to attend. Attendance is always a risk. Still, the organizers have tried to make it fragrance-free and all-inclusive regardless of whether I attend or not. I appreciate the effort.

Recreation Find fragrance-free friends who are empathetic and willing to be safe. You can try to change your smelly friends' bad habits, but as I've discussed in previous posts, don't count on it. Instead of the stress and health risks, change your recreational activities and find new friends.

Does anyone have any accommodation experiences they'd like to share?

Accommodation

The Workplace Environment

If you have been medically diagnosed with multiple chemical sensitivity according to most state laws and the Americans with Disabilities Act (ADA), you are considered disabled. Be sure this diagnosis came with a letter of accommodation that clearly describes your specific condition and your safety needs. Under various disability laws, you have certain rights to accommodation depending on the situation. Is everyone in every situation legally required to accommodate your special needs? No. The two most accommodating environments are workplaces and schools.

Steps to Requesting Accommodation:

1.)  Assess exactly what kind of accommodation you will need in order to safely continue performing your job or educational responsibilities.

What aspects of the environment are causing your symptoms or illness?

Are there ways to rectify the situation and change the environment?

Are there alternative options? A change in location? An adjustment to your schedule in terms of days or hours you work?

Are there standard practices that may be changed? For instance, instead of chemical supplies using non-toxic alternatives.

Would employee policy reforms restricting the use of personal hygiene products help?

The Presentation of Options

To the best of your ability detail the exact steps needed to be taken to make your work or school environment safe. This will involve an honest evaluation of your health in relation to your situation. In some cases, no accommodation will work. Be realistic and be reasonable.

 

2.) Review company or institutional policies so you have an understanding of the organization's level of flexibility and limitations.

3.) Review and research state and federal accommodation laws regarding your situation. Seek assistance from the Americans With Disabilities Act (www.ada.gov), the Equal Employment Opportunity Commission (www.eeoc.gov), the Environmental Protection Agency (www.epa.gov) and if you belong to a union, contact your union representatives. Not only will representatives from these organizations know the laws and pertinent information to your specific situation, but relationship building with key individuals may provide you with a valuable support system.



The Angels of Accommodation

4.) Meet with a lawyer, preferably one who specializes in employment law or civil rights law. Find one who will not charge you for the initial consultation, who may potentially take a case pro-bono, and who has experience with chemical sensitivity and accommodation. Ask about accommodation laws in conjunction with your situation. This lawyer may offer to write a letter to support your accommodation request or attend any meetings you may have with your supervisors. Take a rain check. Not only will they charge you through the nose for these services, you don't want to bring in the big guns. You only want their basic, legal advice at this point. (More on lawyers later....)

The Chemically Sensitive Employees Afraid
To Be Identified
(See the look in their eyes?)

5.) Find out who else would benefit from accommodation such as fellow employees, students, customers, clients, support staff, etc. Find out if anyone has requested accommodation. How was it received? Do this carefully, conversationally, and informally as personal research. Many people worry about job security and will not speak with you for fear you'll give their name to their supervisors risking their positions. Be confidential and trustworthy.

6.) Meet with your supervisor or school administrator to discuss your needs and options. Be prepared for scenarios for acceptance and assistance or denial and hostility, and everything in between.  Be open-minded and professional with an attitude of collaboration. Take detailed notes and listen carefully. Do the conversational contributions indicate they have experience with accommodation requests? Are they open? Are they clueless? Are they feeling threatened? Listen. The clues will help you strategize your plan of action.

The Accommodation Request
(Don't forget your sword!)

7.) Write a letter requesting accommodation. Clearly describe your environment, health issues, and possible options for accommodation. Attach your doctor's letter of accommodation requirements and any other correspondence from supportive healthcare experts.

8.) Meet with your supervisor or school administrator. Take your letter of accommodation, lists of accommodation options, and any research information you deem might be helpful. For instance, without naming names, let them know how many other employees/staff/students would benefit from accommodation. Assume the authority will invite backup personnel to your meeting to serve as witnesses. Do the same. Take along someone from your support system if available: someone from the ADA, EEOC, or your union.

9.) Keep detailed records of every step you take. Keep track of dates and times of contacts and information given.

Steps NOT to take:

The Legal Crusader

1.) Seek legal counsel for information only. Don't threaten authority with legal retribution. Threats can make authority defensive and less than willing to assist. Avoid divulging that you are even meeting with a lawyer or authority may panic, refuse to continue negotiations and arm themselves with their own lawyers. Also, once you get accommodation, you don't want to return to a hostile work or school environment nor be labeled as a troublemaker. It doesn't make for very good working relations. 

2.) Don't be argumentative, rude, disrespectful or entitled at any point no matter how frustrated or ill you are feeling. Your negative attitude will negate and dilute the focus of your request. Maintain an attitude of professionalism and intelligence.

3.) Give only the facts. Do not include excessive, unnecessary information based on emotion, hearsay, or conjecture. Assume everything you write or say will be recorded and possibly used against you later.

Chemically Sensitive Troops

4.) Don't rally the troops by enlisting support from fellow employees and students. This creates an us against them mentality that can backfire. At this point you want a collaborative solution where all parties are working for the betterment of each other. By finding out who else might need accommodation, you may use this as a form of statistical analysis when approaching authority during the initial meeting, but don't imply you've been gathering support (before you declare war) or you'll be seen as a troublemaker negating the positive spirit of the workplace. Don't make them feel defensive or they will decide they have no reason to help you. Once it's viewed as a war, sides are taken and boundaries drawn. It's difficult to reestablish trust.

For someone who doesn't want to rock the boat, being this proactive is not easy. Getting to the point where you are sick all the time and unable to be a productive employee, yet desperately wanting to keep your job will force you into action in hopes of rectifying the situation. Desperation is a great motivator. I have heard of MCSers experiencing harassment from fellow employees who purposely make their lives a living hell by not only wearing perfume, but squirting it on the person's work station or body. Anger is a great motivator, too.

Hissssss. Spit. Hisssss.

In most cases, your employer or school administration will bend over backwards to help, especially if they are in anyway competent when in comes to managing people. The inept employer or school administrator will deny accommodation and in some cases refuse to discuss it regardless of your presentation or proactivity. They just don't want to deal with it.

Good luck!