TESTIMONY AT THE GOVERNOR’S COMMISSION ON DISABILITIES SPECIAL FORUM

ON THE CONCERNS OF PEOPLE AFFECTED BY HOUSEHOLD CHEMICALS

August 23, 2005

Good morning.

My wife’s life too often resembles that of a single woman. My sons have an involved, yet ‘absent’ father, living with them. Some co-workers do not know what to make of me. Some doctors are dismissive. Some of the others simply throw up their hands. Some of my extended family thinks that I am anti-social. Most folks simply cannot wrap their arms around the concept of someone like me, who has MCS (Multiple Chemical Sensitivity).

As a society, we struggle to understand what it must be like living with a disease or disability.

We have made great strides in accommodating many of these, with more steps needed.

Yet, despite over a dozen government organizations including the Department of Housing and Urban Development, the Department of Education, NASA, and the Social Security Administration recognizing the existence and need to accommodate those who are acutely chemically sensitive, life in the 'real world' has not begun to address the needs of MCS sufferers. Or even understand what it is.

During the dozen plus years since I developed MCS, my limitations have increased, along with the severity of reactions. Why? Because, increased exposure to life's accepted chemicals, causes increased sensitivity. For myself, a single exposure can result in: severe body pain, head-to-toe; dizziness, making standing impossible; stomach cramps; loss of muscle and limb control; and more… An exposure can last minutes, hours, or even days. And, the more exposures that one has in a short period of time, the less able one is to withstand the next exposure, without a more serious reaction.

Yet, everyone is different in what triggers them and the reactions which they will endure.

There are no assistive devices available to help us. And, research money into chemical sensitivity is almost non-existent.

Now it is time to recognize the chemically sensitive among us.

We have a love affair with chemicals. Plastics, non-stick pots and pans, and even non-stick finishes for clothing. Particle board furniture. (I even saw a label touting the furniture as being made of 'genuine, artificial plastic'!) New fangled cleaning agents. All wonderful products in many ways. But with anything 'good', there exists the potential downside.

Numerous studies have found residues of these chemicals in our bloodstream. In mothers' breastmilk. In organs of our body. Some last for years in our systems. 20/20 did a segment on Teflon, discovering that traces of it is in the bloodstream of most Americans. Pans with Teflon can emit gases which cause some people to have allergy and flu symptoms. Something doctors now recognize as the ‘Teflon Flu'.

Phthalates, a compound found in many plastics, hairsprays, and perfumes, has been linked to birth and developmental defects.

Our Food and Drug Administration allows cosmetics companies to conceal ingredients under the guise of 'trade secret protection'. Yet, we know that the FDA has received countless reports of folks experiencing dizziness, headaches, or nausea, from specific personal care products. Their response however, is that the complaints are small in number and severity. Yet, as every politician and media outlet knows, for every one complaint received, many, many more exist in silence by those too timid to speak out or uncertain of whom to address their concerns.

TV infomercials tout the wonders of a 'natural, orange cleaner'. However, upon scrutiny, you will see that the product is made of strong chemicals with perhaps 2% orange oil.

Our state and federal officials need to address the true safety concerns of many 'everyday' chemicals', to avoid a repeat of the horrors of smoking-related diseases, even for those experiencing 'only' second-hand smoke.

Back to the impact on my life, as a 'regular citizen' of Rhode Island.

How I loved book stores. Hours browsing through the racks. Now, after minutes my head spins, my muscles ache, and my stomach cramps up. No windows that open, patrons with perfumes and cologne lingering in the store's cafe or at the reading tables, and chemicals used to recycle paper are the cause.

I despise Wal-Mart and Target and the other megastores. Not because they are huge. But because of aisles filled with candles, perfumes, particle board furniture with formaldehyde, and…

When a store is new, it can take a year before I can go in and shop, due to the rugs, and paint, and 'whatever', off-gassing. Forget it when a store that I could tolerate decides to remodel.

Something as basic as getting your hair cut, can be a major dilemma because of colognes, scented talcs, and cleaning agents. Fortunately, I came across a barber who has MS and whose heart is big enough, that he takes me first in the day and contacts other customers, asking them to avoid wearing fragrances.

I live my life, in 'snapshots'. Small outings, if you will. It helps me to feel 'alive', instead of someone confined to the four walls of my home and a controlled workspace.

I have learned what stores I can tolerate, even for 15 minutes. If I can find what I need and get through the checkout by then, great! If not, I leave my purchase in my carriage and leave. I know which theatres I can tolerate… maybe… for a matinee, because the odds of perfumes being in there are less than in the evening, when 'normal couples' often go out. Even then, I am often too dizzy to drive home, so someone drives for me.

Dining out is no picnic, either. Between candles on the tables, arguing with waitstaff about windexing our table or the ones near me… And, praying silently that the party sitting down nearby does not smell like a garden. Sometimes, I have to wolf down a meal and go sit in the car, leaving my family to finish their dinner, in a relaxed fashion.

When my sons were confirmed, I insisted on going to the church. But, waited outside, because of the incense, perfumes, and cleaning agents. And I know that my precious sons felt hurt. I occasionally sit outside my place of worship and pray from within my car. Sometimes a security guard or neighbor looks over to see why I am parked out in front, for so long. Last year, I again tried sitting inside for the service. I soon found myself with little muscle control and great pain that lasted, far too long, afterwards.

Family functions often go on without me. Hosts need to clean their home. Besides, who wants to tell guests not to wear perfume or one of the ever-popular body sprays? If my sons' friends come over and they have on cologne, I excuse myself, and eat not with them, but alone, upstairs. I dread the days when my sons will bring home dates. These women will probably think me 'weird' or anti-social, if they arrive wearing the latest designer scent.

At work, I might struggle through meetings. I hurry to explain to a new co-worker about my sensitivities and politely ask of (or is it plead for) them to avoid perfumes and air fresheners in their cubicles. I show them where a safe cleaning agent is kept. (One that I bought to make things easier for myself.) I often sit in my car, rain, snow, or shine, to eat my lunch because the lunchrooms' scents from fragrances and cleaning chemicals prohibit my socializing there with other employees. A second income is needed, but finding another work environment that I could tolerate, is unfortunately not realistic, now.

Imagine, if you will, how I felt this spring when both my sons went to San Francisco to represent RI in a national academic competition and I could not be there to share this special moment in their lives. I had to look at digital photos and hear explanations upon their arrival home. A surreal scene. As if the roles were reversed and I was the child listening to my parents or uncles reminisce about special times in their past.

There is a social cost to MCS. Many with it are not as fortunate as I am. They do not have a supportive spouse or children. Marriages end in divorce. Other family members abandon them. The stress levels can get quite high, on all ends.

There can be guilt. When I said 'for better or for worse', I never intended to turn my wife's life upside down. There can be jealousy. Of those who can come and go and stay places without problems. You know that you have hit a personal 'low' when you find yourself wondering, one day, whether you, the blind person, or the amputee has the better quality of life. There can be anger and resentment, directed nowhere in particular. There can be fear. As you watch yourself become more and more limited. And you wonder about any damage to the brain or vital organs. And, yes, there could even be periods of depression.

Ultimately, you can reach out to the unknown future for hope. Guided and lifted-up by your inner strength, loved ones, and faith in God.

But perhaps, I digress. This forum is also designed to discuss potential solutions.

First and foremost, there must be education.

I cringed recently when Tucker Carlson of MSNBC TV, 'poo-pooed' a community which banned perfumes and air fresheners from workplaces. And a popular, nationally syndicated radio talk show doctor has stated that those suffering from MCS are imagining it or are psychologically ill.

So, why would hospitals, workplaces, schools, and restaurants even bother to entertain the notion of accommodation?

Surprising is the number of workers who experience headaches, sinus problems, or muscle aches in the office or store, only for those symptoms to vanish after being home. If asked whether or not they might be caused by new carpeting, paint, or a closed-ventilation system, they will likely say 'no'. Some from fear of stirring up problems at work, others from not wanting to acknowledge the reality of chemical sensitivity because of the implications of so doing: loss of their income and ridicule. Employment discrimination for those with chemical sensitivities is great. Workers’ Compensation programs seldom acknowledge MCS.

However, do not be fooled! More employees than you imagine have some level of MCS.

Sick Building Syndrome is a reality. Recognized by even the Federal Government. Imagine the shock when a federal office building was closed after renovations made countless workers ill. We have buildings with windows which do not open. Air is essentially recycled, resulting in build-ups of VOCs (volatile organic compounds), perfumes and cleaning agents, off-gassing from rugs and cubicles…

We know the dangers of being in a locked garage with a car running. However, we allow workers to spend eight hours daily in spaces, where eventually these chemicals will probably have some type of effect on them.

Education.

Folks need to see those in positions of power and influence, recognize and explain the serious nature of MCS. Public Service Announcements, news medias' health segments, hospital staff training, and school in-services are places to begin.

Public service announcements could tout the 'coolness' of good hygiene, without needing to mask poor hygiene with flowery smells. That boys could attract girls by being fun and with sincerity and kindness, instead of pheromone sprays.

Governor Cacieri could join the list of 16 states that have issued MCS Awareness Proclamations. He would be in the company of Governor Jeb Bush, Governor Mitt Romney, and Connecticut's Governor Jodi Rell, among others, who have issued proclamations for awareness of and sensitivity to those with MCS.

Our respected state legislators could push for perfume/fragrance-free government buildings. Now, realistically, you would not be able to eliminate the problem, but you could certainly reduce it. Cleaning could be done in 'off-hours', as much as possible. The legislature could write laws prohibiting employment discrimination against the chemically sensitive. (Naturally, there would need to be practical guidelines.) The ADA, while covering MCS, is very difficult to get the backing of.

Some Rhode Island State employees could be allowed to join the millions of American workers, including Federal employees, who telecommute… work from home. Unions must be willing to co-operate with the state in making this possible. Both sides must work to enforce workplace consideration for those who are asthmatic or chemically sensitive. Why do we value an employee's right to wear perfume or have potpourri on their desk over a co-worker's right to be healthy and to keep their job?

Schools, already sensitive to children's nut allergies and learning disabilities, could ban fragrances in the classroom… all of the school's grounds. PTA's could be instrumental in the education process of parents.

Health curricula could point out the issues facing the asthmatic and chemically sensitive in our communities.

Places of worship could have a space similar to a 'crying room' from where asthmatics and the chemically sensitive could safely participate.

I should point out that for MCS folks, it is not the scent itself that is the problem, but the chemical behind the scent. So that even 'unscented' products can cause distress. Labeling of products should be required to be clearer. A 'perfume-free' product simply has no added fragrance, but still has strong chemicals and their odors.

And don't be fooled! Most cleaning products on the market, today, have equally effective counterparts that would not harm many of those with MCS or asthma. A major consumer magazine, for example, found that lemon juice cleaned glass better than many retail window cleaners. By the way, since when did filling our homes with the scent from plug-in, continuously-blowing, air fresheners replace the home's smell from cooking? Natural, effective cleaning agents could be mandated for government buildings, including schools.

Tremendous is the notion of smoke-free restaurants. However, do we consider the affects on our asthmatic and MCS population, when it comes to perfumes, candles, and air fresheners on the tables? Why not at least, in larger eating establishments, have a scent-free section?

Hurt business? Why accommodating asthmatics and the chemically sensitive would be a boom!

Recently a national hotel chain began offering, at select locations, special rooms designed for the chemically sensitive. Not only because of the cleaning products used in them, but because of the type of furniture and rugs placed in them. - As it is, I don't go on vacation, in part because of the problem in finding a 'safe' room in which to stay.

Where businesses and governments look at 'bottom line dollars and cents', there is an economic loss, to consider. Many of us, eventually lose the ability to work and collect unemployment or Social Security disability. There is the cost of their healthcare. There is the loss to restaurants, stores, theatres, bowling alleys, casinos, and other places where folks congregate and spend their money.

Doctors' offices. The place that you would imagine yourself 'safe', if asthmatic or MCS. Nevertheless, I cannot tell you how many doctors' offices have air fresheners everywhere. And if they can post signs urging us to shut off our cell phones, why can't they ask us when making appointments, or post signs in their waiting rooms, to avoid wearing fragrances? My internist does. And, his practice thrives.

Chemically sensitive folks can readily share tales of physicians who, upon learning of the MCS, chalk up their complaints to stress, instead of conducting further tests.

Hospitals. This March I was hospitalized for an unrelated matter, but literally had to argue with the cleaning crew and their supervisor about not mopping my room, even when I was the only patient there. I had to struggle to get a nurse who was not wearing perfume and deal with other nurses explaining to me that their fragrance would not be offensive. (As if they knew what would be!) Now, with asthmatics, other breathing-compromised patients, and MCS ones, how unreasonable would it be to enforce a no-fragrance policy?

I am shocked by the number of hospital staff who have told me that they have not heard of MCS. Staff who I have struggled with in the hopes that they would not use products, that would cause adverse reactions. For example, the plastic oxygen tube put in my nose will cause instant dizziness, breathing problems, and muscle pain.

Back when I was frightened by very severe reactions and went to the ER, I had a physician tell me that there was something obviously wrong, he knew nothing of MCS, and that I should just not return again for it. If I passed out and hit my head that would probably be the worst thing that would happen. Again, education is the key.

Why couldn't hospitals, government buildings, and schools purchase 'chemically-friendly' paints and carpeting? They do exist! Moreover, they are often insignificantly more expensive, if at all more costly.

The California Department of Health did a large survey and learned that a significant percentage of their populations had some sort of negative reaction to everyday chemicals found in everyday places. There are many more people with MCS than most of us imagine. For we are often invisible, by nature of ‘staying away' from public places. Or we suffer in silence, rather than face mocking or disbelief.

Multiple Chemical Sensitivity came to me, later in life. It has stolen much of my life. However, I refuse… Refuse to let it destroy my life. Together, we can make a difference. We just need to care enough. We just need to act.

Rhode Island is number one, nationally, for many things. Without much effort or expense, Rhode Island can lead New England, even the nation, in moving to not only accommodate those with asthma, allergies, or MCS, but to help our residents stay healthy. To be able to lead productive and active lives, alongside our neighbors.

I thank you for your time and understanding.

(Name withheld on website by request)