Sunday, May 17, 2009

Panelspiel on Environmental Illness

An old panelspiel, from Dec. 2007, focusing on chemical sensitivities and ableism (the oppression of people with disabilities). I would not write it the same way now, but in the interest of continuing to post often, and because it's still true and still something I struggle to navigate, I will swallow my pride and share it anyway.

My name is Davey & I’ve been asked to speak about chemical sensitivities. I feel a little bit awkward about that, because I’ve been on panels about a lot of different issues, but never this one. So this is new to me. I also feel awkward about it because I have relatively mild chemical sensitivities, compared to some other people I know, and to the cases that get publicity (when any do). On the other hand, if my chemical sensitivity were very much more severe than it is, I wouldn’t be able to be in this room with you safely.

First I’m going to explain a little bit about what chemical sensitivity means, and what my experience has been. Then I’ll talk a little bit about how I understand chemical sensitivity in terms of ablism, and about some intersections with other forms of oppression.

I think a lot of people become confused about chemical sensitivity because of the word “sensitive”. People hear sensitive and think, “oh, that person’s just picky,” or whiny, or something like that. This misperception is exacerbated by the fact that most people with chemical sensitivities are women, so sexist stereotypes play into the situation, and by the fact that the medical establishment is not in agreement as to whether or not it constitutes a legitimate physical problem.

Chemical sensitivity has also been called MCS, Sick Building Syndrome, environmental illness, and a lot of other names. Basically it means that chemicals in the environment cause a physiological reaction similar to an allergy, but not a histamine reaction like most allergies, even when those chemicals are found at low levels that are considered safe or that don’t bother most people. People report a very wide range of symptoms.

For me, the chemicals that provoke an obvious reaction are usually perfumes and other scented body products. I get a variety of symptoms in response to those chemicals – sometimes I get short of breath, or I get a wheezing cough kind of like asthma, or I get what feels like a sinus headache or sometimes a migraine. If I leave the room immediately and get fresh air, the symptoms usually go away. If I hang around for longer I often get dizzy and sometimes nauseated. Sometimes symptoms come on suddenly and other times it’s more subtle.

In terms of walking around in everyday life, this means I have a really hard time being in public places. Most body products are scented, so really anywhere that I’m around other people I’m liable to have a reaction. There’s not really a way to avoid all of the substances that make me ill, so I have to prioritize which outings are worth it.

I haven’t stopped going out, but I often have to leave gatherings early. A few times I’ve gotten so ill that I felt it wasn’t safe for me to drive home, and luckily I was out with a friend who could drive my car.

If you have more questions about my personal experience I’m glad to answer them, but for now I’m going to move on to talk about an ablism analysis and some intersections.

I think that MCS is a really clear example of disabilities as socially constructed, for several reasons. First of all, this condition is not natural - it does not come from a biological cause. It’s caused by chemicals that are produced and proliferated by humans. I have never ever had a reaction while taking a walk in the woods, or camping, and I almost never have one when hanging out in my home by myself [when I lived by myself], because I don’t bring chemicals into my home that will trigger a reaction.

Second, the public discourse about MCS individualizes it. When it’s acknowledged at all, it’s treated as an individual medical problem and not as a social problem. People affected by MCS are expected to deal with it by taking medication for specific symptoms, and by avoiding chemicals that trigger them. There’s relatively little action in the other direction, such as putting fewer toxins into the environment, or making less toxic body products.

You can see this tendency in the language that’s used to describe MCS. For example, The National Institute of Environmental Health Sciences (a division of the NIH) defines MCS as a "chronic, recurring disease caused by a person's inability to tolerate an environmental chemical or class of foreign chemicals" (wiki). Note the “caused by a person’s inability to tolerate …” rather than, say, “caused by chemicals that are toxic to some people more severely than others.” For the most part there’s no controversy that these chemicals are toxic, it’s just that they’re supposedly safe at low levels. It seems really logical to me that a chemical that’s toxic at high levels probably isn’t good for you at low levels, so I don’t understand the resistance to blaming the chemicals, rather than the individuals affected by them.

Actually, I think I do understand a little bit. Corporations make a lot of money by taking shortcuts with toxic chemicals. It is more profitable in the short term for corporations to continue making poisonous products, so that’s what they do. And they use ableism to blame people like me when those products prove toxic to us.

On an individual level, when I tell people that I have chemical sensitivities, they almost always ask me if I take medication. The answer is, I do sometimes take medication to treat specific symptoms, but those are chemicals too, so that doesn’t seem like such a clever idea in the long term. And really, why should I have to be popping Excedrins all day or ab/using albuterol, when you could solve the whole issue by switching to a less toxic skin cream?

Finally, before I go on to talk about intersections, I should mention that legally, MCS is not uniformly recognized as a disabling condition. Some people have sensitivities so severe that they can’t be in public spaces at all, and yet they’re routinely denied Medicare and other benefits because MCS is not seen as a legitimate illness. I feel really angry and frustrated about this. One of the main arguments has been that MCS is psychosomatic, that it originates with psychological rather than physiological causes. I have four answers to that:

  • First, as I’ve said, there’s no argument that these chemicals are toxic. Why is it so hard to believe they might be more toxic to some people than to others?
  • Second, if you’ve studied even a tiny bit of neuroscience or neuropsychology, you know that the line between psychological and physical is really fuzzy. Lots of psychological conditions are known to have physiological correlates and/or causes, including depression, anxiety, schizophrenia, and the list goes on.
  • Third, lots of psychological illnesses are considered to be “real” disabilities. People can get Medicaid coverage for a wide range of mental illnesses. Even if MCS is caused in part or in whole by psychological factors, that shouldn’t make it any less legitimate.
  • Fourth, about 80% of people with MCS are female. There’s a long history of illnesses specific to females going undiagnosed, or being pooh-poohed as “all in your head.” As informed people we should be skeptical when these same arguments resurface.

With that as a transition, I’ll give a few more examples of how I see ablism intersecting with other forms of oppression around chemical sensitivities, and then pass it on to the next panelist.

On an institutional level, the intersections that come to mind are environmental racism and environmental classism. Antiracist activists have noticed that toxic industries tend to be located in communities where People of Color and poor people live, and that’s the most basic example of environmental racism or environmental classism. One hypothesis about the etiology of MCS is that a severe or chronic chemical exposure wears down a body’s resistance, making it more sensitive to chemicals that previously did not cause any symptoms. So if poor people and People of Color are more likely to be exposed to toxins in childhood, by having toxic industries sited in their neighborhoods, then they’re more likely to develop chemical sensitivities.

In addition, poor people of all races and People of Color are more likely to work in jobs where they’re exposed to chemicals.

For myself, all that has made me wonder what childhood exposure might have contributed to my current experiences. One thing I think of is that I grew up in a rural area with relatively high levels of agricultural chemicals. Once when I was young a bunch of kids got pretty seriously sick after swimming in a public swimming hole that was contaminated with pesticide runoff. In addition, we were near the Hudson River. You’ve probably heard of the long history of PCB contamination, originating in chemicals dumped from a GE plant for several decades. There’s still an ongoing argument about how to clean it up and who will pay for it. As environmentalists have studied the ecology of the Hudson River, they issue recommendations about which species of fish are safe to eat and which aren’t. During my childhood, the reccomendations seemed to change every couple of years. This year you are allowed to eat the shad, this year you aren’t, and who knows what we were all exposed to?

And, although I grew up in upstate NY, I was born [and now live again] in Oakland, CA. According to the 2000 census, Oakland the most ethnically diverse city in the US (tied with Long Beach) (wiki). It also has amongst the highest rates of asthma and other environmental illnesses, largely due to pollution from the Port of Oakland, which is one of the busiest shipping ports on the West Coast.

Finally, on an individual level, ablism intersects for me with Transgender Oppression. I am transgender. In social settings, transphobia and ignorance about trans issues can cause a huge disruption. I put a lot of energy into just trying to make small talk, without having my gender become an issue for people. In settings where I come out as trans, I feel like I’m already asking a lot of people. So often, I’m making a decision about whether I’m going to ask for “accommodation” in terms of people learning enough about trans issues to be generally respectful, or for the “accommodation” of avoiding chemical scents. I’m afraid if I do both that people will lose patience with me, that all the confusion will be too disruptive, and I just won’t be able to participate in that space. In this example the 2 forms of oppression don’t have a whole lot to do with one another, but on an individual level the way that they can play out is very similar, and when they both play out at once it can be overwhelming.

That’s all I have time for. Thank you so much for listening. I’ll pass it off to one of the other panelists now. I look forward to hearing your questions.

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