August 23, 2005 Testimony for RI Governor’s Commission on Disability
To the Commission:
My name is Liberty Goodwin, and I am a “canary”. I like this term because it draws a comparison to the birds taken down into the mines as early warning systems. When the canary keeled over, the miner didn’t say, “Oh that poor thing has some terrible canary disease”. He said, “I’d better get out of here fast – or I’ll be next.” Most of us were not born having bad reactions to common chemicals. Some were sensitized, by a major toxic exposure, to something like a waste dump, sick building, chemical spill or pesticide dousing. Others just finally could no longer handle the long term, low level exposure to many different chemicals, in combination with other stresses on our immune systems.
As the Director of Toxics Information Project (TIP) and a person who has personally had chemical sensitivities for around 20 years, I have a tremendous amount of information which I could share. In the interest of time, I will limit myself today to brief comments about my own experience, a mention of a few other situations that have come to my attention, and some suggestions for action to address the problems. Additional materials will be submitted in writing.
MY OWN STORY
I believe that in my case, some of my vulnerability started in babyhood. I was premature, and was brought home to being kept warm for a while by the gas stove in my parents’ apartment. Also, as a child I had sensitive skin, could not tolerate wearing wool, only cotton. I was sensitive as well to the sun, and nearly passed out at a field day event. However, until around 1973, I appeared otherwise healthy, and even used perfume and make-up without incident. Around that time, I developed migraine-like eye symptoms due to hormones in birth control pills, which I had to discontinue. I also got divorced and involved in a four-year custody battle. Under all of this stress, I wound up with hypoglycemia, candida, was even diagnosed at one point as pre-diabetic. Later, while living in Florida in the mid 1980s, I was so depleted by my symptoms that I could often could barely get up and walk across the room. I had my first reaction to laundry detergent at that time – a terrible rash and a jumpiness that prevented me from sleeping.
The first problem being in a building that I remember was at a chiropractor’s office. It seemed strange that I should become headachy and disoriented when I had been in the same waiting room the week before without such a reaction. The mystery was solved when I realized that, although the newish carpet was there before, the second visit was on Monday morning, after the office was closed up all weekend collecting fumes. In 1988, after they built a new building at my graduate school, the only way I could attend class was by taking an electronic air cleaner into the room with me. I was not able to participate in the life of the school in any other way. The worship room had new cushions and carpet, the place where students ate was too large for my air cleaner to handle.
After coming to Rhode Island, I was able for a while to work as a phone research interviewer, then found employment in the Community Policing Bureau of the Providence Police Department. It came to an end when they moved another employee down from the third shift to mine. She was reeking with fragrance, and applying some product while sitting at the desk up against and in front of mine. I got a headache, became dizzy, and had to have an officer take me home. Since there was only one room in the unit, and since she had valuable bi-lingual skills, I was then out of a job. The next job, phone interviewing at Memorial Hospital, was okay for a while with my air cleaner in the cubicle – but when they moved operations to a renovated facility elsewhere, I was not invited to continue, because they knew I couldn’t tolerate the new quarters.
I hope that the Commission can understand the extreme insecurity this disability produces, just in everyday life. We canaries never know if we can be somewhere, or will have to leave, will become ill. We never know from what we may next be threatened. We don’t even know if we will be able to use a public bathroom! At home, I had another bout with detergent reaction when my landlord’s daughter used our washing machine with something nasty. Outside, the pervasive use of lawn chemicals is a constant threat. I went to the bank to make a deposit, and was confronted by the sight of two men applying something to the front lawn. Thinking to simply avoid them, I quickly dashed into the bank , only to find the one story building was completely permeated with fumes from whatever they were applying, and got one of the worst headaches ever. When I came out, I ran over to their truck to read the label on the container they were drawing on – it said “Round-Up” and also the name of another common lawn pesticide beginning with “D”. I escaped as quickly as I could, but, unlike the brief recovery time after a perfume headache, this one lasted for days.
I don’t mind so much not being able to go to the theatre or any other entertainment spectacle with lots of people for which you have to buy tickets (knowing that if the wrong person sits next to me, I’ll have to leave). But it is a real problem having to run the gauntlet to see my three grandchildren in California. My husband and I fly on Southwest because seats are not assigned. I put on my “I Can Breathe” mask – used to use a latex paint mask – and we try to screen out the people wearing fragrance and encourage safe ones to sit near us. Usually it works. However, once a woman reeking with perfume switched with someone in front of me, and after useless argument with a “disability expert” for 20 minutes, I was forced to keep the mask on all the way to Kansas City. Another time a perfume wearer refused to sit further away from me – again the mask – in which I cannot eat or drink, by the way. On a previous trip, a flight attendant wearing fragrance refused to have someone else serve our section – and stood talking to someone right in front of me for about ten minutes, although she knew it was making me ill. The worst was the time I was threatened with the police as personnel tried to remove me from the plane after objecting to my asking people to accommodate me. Fortunately, a calmer head appeared and I was able to resolve the problem without being stranded in Arizona. Ironically, the airlines routinely ask people to voluntarily change their seat to allow families to sit together – the same action that would meet my needs just fine.
The greatest fear, however, is that I will become ill and be taken to the hospital – one of the most threatening environments a “canary” can face. Most are a toxic stew of employee fragrance, sickening cleaners and disinfectants, and a variety of other chemicals. It is a terrible thing to be faced with the unanswerable question – is it more dangerous to fight my illness on my own, or to expose myself to the uncontrollable fumes in a “health care facility”?
STORIES OF OTHERS
Whatever problems I have had myself, even more heartrending are the tales of woe I hear from people calling my organization, or find on internet sites. I’ve not enough time here to discuss these. There are those unable to utilize medical or nursing care, who cannot find housing that doesn’t make them sick. There are children who are diagnosed with ADD – some of whom are found to have dramatic changes in their learning ability when chemicals are removed from the classroom On the playing fields, kids have asthmatic attacks, are even taken to the hospital in anaphylactic shock. In the workplace, vulnerable people are mocked and even attached by co-workers – who douse themselves with perfume to make the “canary” sick. One group of kids even assaulted their teacher with fragrance. A friend’s elderly mother with Alzheimer’s had to be moved to 3 different nursing homes because she reacted to fragrance and cleaning chemicals by becoming violent. The problem went away when personnel were persuaded to remove the chemical triggers.
WHAT TO DO?
The really important thing is, what actions can reasonably and realistically be taken to improve the situation of this vulnerable group of people? I have a few suggestions.
In closing, I wish to say that I am very grateful for the Commission’s willingness to take this concern seriously, to give it their time and attention, and to consider ways to improve the lives of Rhode Islanders for whom chemical exposures can be health and life-threatening. I look forward to helping this effort in any way that I can.
Liberty Goodwin, Director
Toxics Information Project
P.O. Box 40441, Providence, RI 02940