My Speech on Housing and MCS

 

Hey peeps,

This is one of the things that kept me busy over the month of November, 2013: The Professional Writing and Editing, Diploma subject, Advanced Nonfiction, that I was doing at Victoria University (VU) had just wrapped up; and the last module covered was Speech Writing. I was most surprised and honoured when I was contacted and asked to give a talk on chemical sensitivities and housing.

(Speech writing skills put into immediate real-world action: How’s that for putting theory into practice?)

Katherine Mcintosh, and The Safe House Committee held a fragrance free event called ‘The Good House Dinner’. All in all, 150 people attended, and in the interest of everyone’s health and safety, they were asked not to wear fragrances, and to turn off their mobile phones. People who attended were asked to pay what they thought the dinner was worth. It was organic, good food. (Desert was divine!) There were items up for auction, plants for sale, and attendants were able to donate money towards building a safe non-toxic house for Katherine, who has been living in tents, and make shift housing using tarps and caravans for the last 4 years. The night was a blast. (Yes, I know, I don’t get out much, so any fragrance free event is going to rock my world! But this one left a lasting impact… that now, thankfully, I get to share with all of you!)

🙂

Here’s the transcript of my talk:

In 2003,  the year I got sick, the National Academy of Sciences reported that 95% of ingredients that were used to produce fragrances and perfumes were derived from petroleum, including known toxins capable of causing cancer, birth defects, central nervous system disorders and allergic reactions.

Over 5000 chemicals were used; yet only 1500 were tested for safety.

Today, those numbers have more than tripled.

In Australia, AESSRA (The Allergy and Environmental Sensitivity Support and Research Association), report that a 2002, New South Wales Adult Health Survey showed 2.9% of respondents reported having been diagnosed with chemical sensitivity and 24.6% of respondents reported sensitivity to chemicals.

The illness, Multiple Chemical Sensitivity (MCS) is a recognised medical disease in Germany, Luxemburg, Austria and Japan.

In the US, Canada and Australia, it’s recognised as a disability; and, in Canada and Australia, people with this condition are entitled to protection under the umbrella of the Human Rights Act.

In Australia, we now have MCS Hospital guidelines for people living in Victoria, the ACT, Western Australia and South Australia.

These enable people like Katherine and myself to access emergency care without getting sicker from commonly used everyday chemicals, foods and medications.

We also have the Australian Human Rights’ Access to Buildings and Services guidelines. These cover the use of chemicals and materials used within buildings. Just as wheelchair ramps give people in wheelchairs access to buildings, the guidelines are helping to make places ‘accessible’ to chemically sensitive people!

But when it comes to housing for chemically sensitive people, the needs are as vast and varied as the substances that wreck havoc with our immune systems.For, the difference between being symptom free or knocked flat by a chemical exposure can be as simple and basic as having a clean—and by clean I mean, a toxin-free—living space! However, finding or creating one can be anything but simple and basic.

Ten years ago, I had an accident where I breathed in swimming pool chlorine powder. Soon after, many other substances began making me ill: all of my household cleaning products; our whole family’s personal care products; and most of the chemical exposures that are a part of all our daily living.

From there, it snowballed until I was in chronic pain all the time.

An Immunologist, Dr Colin Little, tested me for rubber, gas, woodsmoke, moulds, fragrances, petrochemicals, diesel, and car exhaust, finally diagnosing me as chemically sensitive. MCS was never mentioned, and I had no idea what that was.My symptoms were described as inhalant allergies; however, the mechanisms involved were different.

I was told that the only thing I could do to improve my health was to move away from the city and find a place to live out near the ocean. I walked out of the specialist’s office armed with a long list of specifications, determined to find a place where I could recover.

I mean, surely this was something I could recover from…?

I took my, then, seven year old out of school, packed the car, spending the next month driving up and down Great Ocean Road, looking at totally unsuitable and unaffordable places while staying in holiday accommodation totally unsuitable and unaffordable that only served to worsen my health.

My doctor suggested I try the other side of the bay; luckily, I found temporary accommodation in a bed and breakfast place at Rye on the Mornington Peninsula. It just so happened that a woman who was also chemically sensitive ran it. I stayed there another month while I tried just about every real estate agency in the area. Just entering each property caused symptoms that took days to recover from. Meeting estate agents dressed in power suits while dripping in designer fragrances caused my eyes and nose to burn, leaving me in even worse chronic pain:

For weeks I kept my nostrils stuffed with organic cotton wool because just breathing clean air—let alone air laden with fragrance chemical molecules—felt as if I were breathing in shards of glass.

I realised then that I was going about it all wrong. So I put my needs into a bullet point list, beginning in order of what I was least likely to even consider compromising on. And I began ringing the agents instead. I would start by explaining that I had severe inhalant allergies because if I said if I said chemical sensitivities they couldn’t understand the concept. And I explained that I had to be careful when going into properties that might make me sick.

I then said that I could only look at places that met the criteria that my specialist had given me:

ð    close to the ocean with a sea-breeze

ð    not freshly painted

ð    no carpet! (floorboards or tiles only, please!)

ð    not recently water damaged or containing any mouldy areas

ð    not near a busy road, area, factory, school or golf course

ð    no properties that had ambi-purs, glade plug-ins or any other type of fragrance emitting device

ð    it needed a split system air-conditioning/heating system

ð    oh, and with electrical cooking facilities; not gas!

ð    and, not more than $220 per week

ð    oh, and the deal breaker: a kitchen not made from chipboard!

 

Here’s what happened:

Agents laughed at me. They told me I wouldn’t find anything like that. (You see, it was 2003 and floorboards were not yet fashionable). Other agents were sympathetic, taking my number, saying they’d call if something came up.

You see, the problem is, agents try to get people to comprise and take things they don’t really want or need; however, breathing is not something a person can compromise on. We can’t suspend it, or do less of it. And it’s the most fundamental need we have.

The time limit at the B&B came to an end but the owner helped to secure a vacant holiday house nearby. It was a hot house, outgassing cleaning chemicals, and formaldehyde from the recently remodelled new chipboard kitchen. The only place where I could breathe without getting ill was outside on the balcony. So I slept on a borrowed camping bed with wool blankets and cotton sheets folded into a makeshift mattress, for even foam was making me ill.

Inside the house, I made up a bed on the couch for my daughter. However, each night she came out and climbed into our cot under the stars. We listened to waves, crashing on the beach, soothing us to sleep. And when it rained, we used a plastic sheet over the top of us to keep dry.

When it got smoky, I slept with a heavy-duty silicone mask strapped to my face: The type that people who work with dangerous chemicals use.

On an emotional level, the way we were living began to wear me down and I found it hard to believe that it was even happening. I thought I would go to sleep and wake to find that the strange illness that no one seemed to understand would be gone.

I was beside myself with guilt for keeping my daughter out of school. I couldn’t go into shops without getting chronically ill; and, worst of all, there I was sending a seven year old in to the supermarket, armed with a shopping list, my purse and the courage of an eager meerkat.

Driving would make me ill; fragrances and washing powder that I had previously used were now causing my clothes to make me sick. We had to throw out most of our possessions… It was a nightmare.

Not long after, I hit gold: a real estate agent, a woman, who, once she heard about my situation, was so moved by my plight that, almost in tears, she explained how sad she was that she didn’t have a suitable property to offer.

However, she did promise to ring the owners of some of the holiday houses that she managed in the area. I didn’t expect to hear back from her, I was so shattered at what our lives had become that I had began to expect the worse.

But she did call back; she had a property that met just about everything on our list. But it did have a chipboard kitchen. (All houses have chipboard kitchens!)

Gingerly, I asked the woman if she wore fragrance and if it were at all possible that she could please not wear it on the day of our meeting. Just that first act of ‘fragrance activism’ was nerve wracking: It felt so intrusive to ask another person not to wear something. Little did I know, ten years later, it would be a request I would turn into a mission, parroting it out to the world.

It turned out that the house was high on a hill along the ocean at back beach Portsea. And it was around this time that I met other chemically sensitive people. I met people with electrical sensitivity. I met people who had been like this for forty years.

And I heard of an elusive few who had recovered… because they lived healthy lives in non-toxic homes!

I found out that there were people who were so chronically ill, they lived their lives in total isolation.

And I was told that I was really lucky to have found a property like the one I had.

Apart from woodsmoke and pollution from the residents who infiltrated the area on weekends, the house was exactly what I needed.

The one thing we had to take action on, as suggested by my doctor, was to cover the exposed chipboard with aluminium foil. As a friend did this for me, I took photos, and wrote an article about it. Which was then accepted for publication in AESSRAs, magazine, Sensitivity Matters.

Now, when faced with a challenge, I think back to what I held out for, searching until I found what it was I needed to begin to heal, and I still feel inspired.

I now use this inspiration to help others (and myself when life seems anything but possible)!

I stayed there for five years, nearly recovering my health back.

Without, shame or embarrassment, I wore a 3M carbon filter mask everywhere I went, and lived an amazingly clean life with very little furniture or belongings.

I could breathe without pain, bask in the sun, and go for long walks in the bush; and that bought me great joy.

When the owner wanted to sell the property, kindly, he gave me a year’s notice.

This time I wanted to move back closer to the city and friends, so we looked for a place at Mount Macedon. I found a cottage on an organic farm behind hanging rock. It’s only supply of water came from underground springs.

I hadn’t known it then, but exposure to chlorine was the one thing holding my health back. We wash in it. It’s on our clothes. And, silly me, I’d been filling my kettle with it for the last five years.

It was here, at this new house, where I fully recovered.

Finally, I could go into supermarkets without getting sick; I didn’t have to wear a mask in public or suffer the stares and sometimes rude comments that go along with it; I could sit outside coffee shops with friends; I could drive in peak hour traffic; and I could even go into Myers, past the fragrance counters and not get sick; and I could go to the cinema. (I did find that if I stayed in a fragranced area for too long, I’d get ill but nothing like I used to; and I would always bounce back by the next day.)

Soon after, I moved back to the city, back to where I had come. I mean, why not? I was cured wasn’t I?

I enrolled in the professional writing and editing Diploma at Victoria University; and I sent my daughter back to the school where, sadly, she had left behind her friends.

My rent was low enough that I could start saving towards contributing towards a deposit to buy land. I had a small income from writing and other projects, and my life seemed to be falling into place…

After a year, I started to get sick again. The symptoms were just like before; except, I developed severe sensitivities to most foods too. In short, I found that the house I was in had a mould problem; my body and brain would shut down for days. I had weeks in bed at a time. I began to get sick at University and I spent the rest of 2012 studying from home.

This year (2013), I’ve made some radical changes, moving out to a place on the Bellarine Peninsula. It’s funny because that was the first seaside town I stopped at while looking all those years ago.

The house is not perfect; the pine floors needed to be covered with removable foil due to something that was on them from the previous tenants; and, the house is on the side of town which is closer to the bay and the main street, which means boat fuel, and , on weekends, traffic fumes. But it’s a vast improvement on where I was, and I can open the windows and to take advantage of the sea breeze. It’s lovely. It even has a bathroom, which was newly renovated, meaning that I didn’t have to tackle the previous tenants fragrance chemicals. This house, like my last two rentals, meets most of the criteria from the doctor’s list.

A friend has purchased a block of land, my name is on the title, and, it’s here that I hope to build a low-toxic home next year. Once it’s built, I’ll be paying my share the same as if I am paying rent. The property backs onto a National Reserve.

One of our goals is to have a cottage out back. This will be used as emergency accommodation for people who find themselves in the situation that Katherine I have found ourselves in. Or as emergency bushfire relief accommodation for people sensitive to chemicals who have been displaced by bushfire.

I still attend classes at VU; and I’m lucky enough that they have made the classes fragrance free and put in an air-purifier in the room. There’s a sign on the door that reminds people that it’s a fragrance free area. And the teacher sends out emails reminding people the days before classes to please consider my needs and not use spray type products or chemical based fragrances. There is a notice in the student’s handbook about the situation.

And one student even wrote an article about why even people who don’t have any issues with fragrances should go fragrance free—all the time.

When I first started there, the Coordinator of Professional Writing and Editing helped me write a letter to the students, explaining what happens to me and what I need for them to do to help me.

This year, one of my teachers went to the trouble of putting all printed material into plastic slips so as to minimise ink exposure. And, Victoria University Disability Services loaned me an iPad so I can read documents and books without suffering upper respiratory symptoms from breathing in ink fumes.

You know…I was feeling a tad awful about all the trouble people were going to. I could hardly believe my eyes when I received a text, sent out to all students, saying that “all the professional writing classes are now fragrance free due to staff and students who have reported health problems with these products.”

I know, and I want you all to know that speaking up about these issues is so important.

Not just for people like Katherine and me but for so many others. For the children and for future generations. It’s a problem that affects everyone in one way or another. Please wish us luck with our housing issues. And please, for everyone’s sake, stay fragrance free.

References

NSW Department of Health (2002) The NSW Adult Health Survey 2002. NSW Public Health Bulletin Supplement 14: S4. December 2003

HREOC (2007) Human Rights and Equal Opportunity Commission. Guidelines: Indicators of Access to Buildings and Services

Australian Government Department of Health and Ageing Office of Chemical Safety (OCS) and National Industrial Chemicals Notification and Assessment Scheme (NICNAS) Multiple Chemical Sensitivity Review Factsheet