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.
Blessings,
Liberty Goodwin,
Director
Toxics
Information Project
P.O. Box 40441,
Providence, RI 02940
401-351-9193, liberty@toxicsinfo.org