Disability and Thanksgiving: How Grateful Are We Expected to Be?

Many years ago, when I was new to the world of chronic illness and disability, a chemically sensitive friend made a comment that resonated with me. She said, “Sometimes I wish I could just be thankful for help instead of having to be super, super thankful.” 

Now that I’ve been on this journey for a while, I have a better understanding of the social dynamics that make us feel the need to be “super, super thankful.” It’s related to the ways that disability can be viewed, sometimes called models of disability. 

1. The medical model – When disability is viewed through the medical model lens, it focuses on what is perceived to be wrong with someone’s body and on how it could be fixed. It sees deviance from the norm as evidence of defects that need to be addressed or diseases that need to be cured. 

One of the challenges of this model is that medical professionals are given a great deal of power over people with disabilities. Patients with obvious, well-understood conditions are more likely to get the label and any help that might go with it than people with less-understood or more difficult to diagnose conditions who are equally limited.

Another problem with seeing disability solely through a medical lens is that it tends to put more focus on the condition than on the person as a whole and on what else they might want along with or instead of an altered body. In his excellent book Disability and the Church, Lamar Hardwick says that churches often ask the wrong question. They ask “Why aren’t they healed?” instead of “Why aren’t they here?” Disabled people want access, with or without healing.

2. The charity model – In the charity model, people with disabilities are seen as objects of pity who need help and guidance. Among the problems with this model is that the people offering help generally decide what kind it will be. It often involves making decisions for people that they would prefer to make for themselves.

3. The economic model – the economic model focuses on the monetary cost of a disability. If someone isn’t working a full-time job, it evaluates the extent of lost wages. If people are receiving support from government social programs, it focuses on how much is spent. 

When people operate out of this model, the focus is generally on bringing the monetary cost of disability down. It tends to create a hierarchy among people with disabilities, with those able to work being valued more highly than those who are not. It also contributes to a prevalent fear and belief that people are somehow cheating the system, and receiving benefits they don’t deserve. This leads to seeing people with disabilities as threats to the economic well-being of others.

4. The moral/blame model – In the moral model, people with disabilities are seen as having somehow caused their own challenges. They are a result of sin, lack of faith, “bad karma,” or poor choices.

This model is more common in some groups (primarily religious ones) than in society at large, but a corollary in the wider society is the implied message that people are suffering from lack of knowledge or effort. The tendency of people to ask about the treatment modalities that disabled people have tried, or offer advice about medical interventions, diet, supplements, etc., is an indication that they believe people’s disability challenges are at least to some degree a result of ignorance or not trying hard enough to change their circumstances.

5. The inspiration model – In some respects, the inspiration model is the opposite of the charity model. In this view, people with disabilities are seen as inspiring and worthy of praise. Although most disabled people would prefer to be seen this way than as objects of pity, there are also negatives to this way of viewing others. In comparison to the charity model, where “help” is often offered, whether it’s needed or not, in the inspiration model, the idea seems to be that people with disabilities are strong and resilient and don’t need any help at all. 

“Inspiration porn” is a term sometimes used when media depictions of disabled people are one-dimensional and seemingly designed to make non-disabled people feel good. A Forbes article notes many negative effects, including that inspiring stories of disabled people overcoming challenges can gloss over “underlying injustice and systemic failures that could be fixed if properly faced and addressed.”  

6. The social model – The social model puts the focus on society rather than on individuals. It focuses on barriers to access and on removing them and changing attitudes. Differences among people are not viewed as defects in those who don’t fit the norm.

If a person with mobility issues is unable to access the second floor of a building, the medical model would say the problem is in the person’s legs. The social model would say that the problem is that the building only has stairs and no elevator.

For another example, think of the tallest and shortest people you know. If every door in every building was just barely large enough for the shortest people to pass through,  being tall would be a disadvantage. If tall people were unable to pass through at all (they lacked the ability), they could be considered disabled. In this scenario, is the problem a person’s height or is it a social problem, where only the needs of the shortest people are considered?

7. The human rights model – The human rights model views disability through a lens of fairness and equity. It focuses on ways in which people with disabilities are treated as “less than” and works to change unjust practices. The Americans with Disabilities Act was an attempt to expand the civil rights of disabled people.

This brings us back to the need to be “super, super thankful.” Where does that felt need come from? Let’s look at the logical conclusions of some of the disability models for the answer. In the medical model, if you have a poorly understood condition, then people might not consider you “really disabled” or at least disabled enough to be worthy of helping. This is especially true if you don’t receive disability insurance payments. Qualifying relies both on proving medical need and on paying into the system, which is a problem for many people, including stay-at-home parents.

In the inspiration model, people are seen as not needing help, and in the moral/blame model they are seen as not deserving it because they caused or contributed to their own needs. Then there’s the economic model, which is perhaps the one that most contributes to the problem. In a world where resources are seen as finite and capitalism reigns supreme, those who aren’t seen as contributing to society in the ways it deems most valuable are likely to be viewed with tolerance at best and contempt at worst. 

This all leads to the idea that disabled people should be exceptionally grateful for anything they receive, because they really don’t deserve much at all. I’m not talking just about government or monetary help. The friend who first expressed the need to be “super, super thankful” was talking about someone who gave her a ride to a medical appointment. People in the chemical sensitivity world often feel the need to express exuberant, abundant thanks for things like family members agreeing to be fragrance free for reunions, or friends that provide video access to events so we can be part of them.

Let me be clear in saying that the people who offer help aren’t always the same ones sending the message that we’re a burden or a drain on society and that we should therefore be extremely grateful for anything we’re offered. Sometimes they are, but sometimes we simply internalize the message that we get from society at large and our response to it becomes our default way of moving through the world. 

I believe in the power of gratitude. Focusing on blessings and thanking God and others for all I’ve been given is an important part of maintaining my spiritual and emotional health. Giving thanks is something the Bible directs us to do and I’m convinced that’s in part because it’s so good for us.

So, if you’ve ever helped me navigate a world not built for me, metaphorically enlarged a door so I could pass through it, or helped me in any other way, let me take this moment to say that I’m truly grateful for your efforts. Truly. But, yeah, I wish the world wasn’t constantly sending me the message that I don’t deserve it.

Why Have Online Church Options Gone Away?

I wish I had actual statistics, but from talking to others in the chronic illness/disability community, I gather that most churches have removed or cut back the online access options they had in place during the height of the pandemic. I know of churches that opened their digital doors during Covid, but have now shut them again completely, and others that were offering interactive options (Bible Studies and Discipleship Groups) that now only provide access to their worship services. Since churches proved they can offer online options when the desire is there, it seems important to examine why so many of them have stopped. 

A helpful article by Karl Vaters titled No, Pastor, Online Church Is Not Slowing Your In-Person Attendance relates this common conversation among pastors.

• Pastor 1: How has your attendance been, post Covid?

• Pastor 2: Rough. A good one-third haven’t come back yet.

• Pastor 1: It’s half for us. I blame online church. They’d rather watch at home than show up in person.

• Pastor 2: I agree. We may stop our live stream so they have to come back. Maybe that will work.

• Pastor 1: We’re thinking of doing the same thing.

I’ve seen many conversations like this play out on social media. My gut tells me this is probably the biggest reason that churches are turning off their cameras and internet connections.

Vaters pushes back against this line of thinking. He points out that in-person church attendance was already dropping long before online church became common. He notes that churches that stop streaming don’t see an in-person attendance rise. He also says this. “According to the latest reliable stats from Barna, around 20 percent of church attenders only watch church online. And there’s plenty of anecdotal evidence to suggest that most of the 20 percent who only do online church didn’t stop going for convenience, but for many reasons, including illness, distance, age, trauma, and more.”

I’m tempted to highlight that quote in red or type it in all caps. It’s such a basic point that seems to be missing in almost all the conversations I’ve witnessed. Those of us who join you from home aren’t just lazy. We don’t stay home because it’s easier or we don’t want to be pressured into serving or giving. We want to be part of your church, but things we can’t control keep us from being with you in person. Very often, that reason is chronic illness or disability.

Cognitive Biases

Maybe there are also other factors at play when churches shut their digital doors. A Psychology Today article on Why Leaders Find It So Hard to Accept Remote Work points to three cognitive biases that make bosses skeptical. I think they’re also applicable in the church context. 

1. The first bias is ambiguity aversion. This is the tendency of human beings to prefer known risks over unknown ones. Having workers or church attenders online instead of in person feels like an unknown risk.

2. The second bias involves social distance, meaning that we tend to like and trust people more when they’re physically close to us. People who aren’t physically close seem less trustworthy and more suspicious.

3. A third cognitive bias that may play a role is the sunk cost fallacy. That’s the tendency to avoid change once we’ve already invested time or money in something.

What’s the Goal?

So is it worth it to overcome our biases? Are online options good or bad for churches? Vader says they’re good. He notes the following:

“The first purpose is as an alternative for those who can’t attend in person. The family on vacation, the senior who can’t make it due to illness, and so on. They want to be there, but are temporarily absent. And they’re grateful for the chance to check in with their home church online for a week or two.

The second purpose for online church is to serve as a sneak peek for those who are looking for a church to attend. They’re not watching online instead of coming in person, they’re watching several online church services hoping to find one to attend.

In both circumstances, online church isn’t keeping people from attending, it’s helping connect them to the in-person experience. Online church is a step toward in-person attendance, not away from it.” 

I appreciate his point, but he leaves out something important. What about the people who can’t attend in person ever? What about people with illnesses that are chronic and not temporary? What about people with disabilities, who can’t enter the church building unless the building is made more accessible? Do we matter, too? Is the goal to get people in the building or is the goal to minister?

Lifeway Research asked pastors the question, “Does Online Church Attendance ‘Count’?” The responses are interesting (pastors were split on whether online viewers could be counted as regular attenders), but for me, the question itself is equally as important. When I read the question of whether it counts, I translate it in my head as to whether I and others like me count.

Dave Adamson, an online pastor I follow on social media, says this: “For the first time in human history, we have the technology to literally ‘go into all the world’ in an instant. And yet church leaders still insist on using this technology to invite people to events, instead of inviting them to conversations.”

Do you want to go into the chronic illness/disability corner of the world? Do you want to invite us into your conversations? We’re watching to see.

MCS Isn’t an Anxiety Disorder

The idea that Multiple Chemical Sensitivity (MCS) is an anxiety disorder is one that just won’t go away, despite the abundance of evidence to the contrary. I wrote a post about some of the studies demonstrating biological causes 11 years ago and I’m going to revisit the topic today and briefly discuss some of what we’ve learned since then. Some of these mechanisms overlap and work together, but I’ll separate them for the sake of clarity.

• Mast cells may be involved. A 2021 study notes that our understanding of mast cells and their ability to cause inflammatory and allergic responses has grown rapidly in the past decade. Mast cells are the body’s first responders, reacting quickly when they perceive a threat. They respond to different threats in specific ways, releasing histamine in response to a bee sting, for example, and different mediators in response to chemical exposures. The authors note that mast cell activation appears capable of explaining chemical, food, and drug intolerances that follow exposure to a wide range of xenobiotics (chemicals not naturally produced by the body). After comparing patients with Mast Cell Activation Syndrome (MCAS) and Chemical Intolerance (CI) or Toxicant Induced Loss of Tolerance (TILT) they note that “as the likelihood of patients having MCAS increases, their likelihood of having CI/TILT similarly increases, to a near-perfect correspondence at the high ends of these scales.”

• Stimulation of the aryl hydrocarbon receptor (AHR) and the NMDA receptor may be part of the process. If you’re interested in this fascinating but somewhat complicated topic, block off some time, put on your thinking cap, and watch the brilliant and tireless Bob Miller (who I’ve worked with for years) explain it in a recent video. 

  The AHR is a unique environmental sensor that, depending on what it binds with, can act in either a pro-inflammatory or anti-inflammatory manner. Exposure to certain chemicals and other things, including mycotoxins from mold, can lead it to initiate a process that stimulates mast cells. The process Miller describes can also involve an increase in intracellular calcium. When the balance is off between the calcium outside and inside our cells, it can cause significant problems, including damage to the immune and central nervous systems.

• Chemical exposures can activate the cell danger response (CDR). The CDR is triggered when threats in the environment overwhelm the cell’s capacity to meet them. A 2020 article notes that people can be resistant to exposures, but then become vulnerable to reactions after a predisposing event. The author adds that in sensitive people, “whose cell danger response has been primed by a perfect storm of previous chemical, microbial, physical, and/or psychological stresses,” exposures can cause significant and long-lasting reactions. In an earlier publication, the author noted that an understanding of the CDR helps us reframe old ideas about disease development for a wide range of conditions, including “food and chemical sensitivity syndromes.”

• Endocrine disrupting chemicals may be part of the picture.  In a wonderful presentation that’s well worth watching, Dr. John Molot notes that traditional toxicology has always said that “the dose makes the poison,” so the field has had trouble understanding how people with MCS can react to such low levels of chemical pollutants. We now know, however, that some chemicals can act at very low doses, due to the way they interfere with the functioning of hormones. “Hormones” doesn’t just mean the reproductive ones. We have over 50, including serotonin, insulin, and cortisol, and they have wide-ranging effects.

  One of the ways that certain chemicals confuse our body is that they bind to the cell receptors where natural hormones are supposed to fit. Molot states, “If a foreign chemical has an affinity to bind to a receptor, it can stimulate it and initiate changes in cell signaling and function. Even very low, but repeated doses can stimulate the cell to produce even more of these receptors (this is called upregulation) which results in an increased ability to detect the chemical and increased responses by the cell to the perceived message.”

• Transient Receptor Potential (TRP) channels may play a role. Molot notes that the 2021 Nobel prize was won by David Julius and Ardem Patapoutian for their discovery of this family of receptors. TRPs respond to stimuli, including from chemicals, and transmit corresponding signals to cells. Molot points out that there is robust evidence that these receptors can become sensitized. In fact, he points to 20 studies that show that two particular TRPs are sensitized in patients with Multiple Chemical Sensitivity.

• There seems to be a strong genetic component. In particular, when people have a genetic profile that makes it harder for them to detoxify toxic compounds, they are much more likely to develop MCS. In my 2012 post I mentioned a study that found that women with variants in two genes associated with detoxification were over 18 times more likely to have MCS. In his video presentation, Molot points to seven published papers demonstrating that patients with MCS have more genetic variants related to poor detoxification than people without the condition do.

  In 2015, a fascinating study was published that indirectly points to the genetic component and detoxification challenges. The authors found that mothers with chemical intolerances were three times more likely than others to report having a child with autism. One possible explanation is that the children inherit the genes that make them poor detoxifiers from their mother and the buildup of toxins contributes to the development of autism. Another possibility is that even without inheriting the problematic genes, the children may simply be born with a higher toxic load because mothers unfortunately share some of their chemical body burden with their developing children. Whatever the mechanism, it seems unlikely that the correlation would exist if MCS were simply a psychological condition.

I often wonder why the “MCS is anxiety” narrative has such deep roots despite all the contrary evidence. As I’ve noted many times, part of the reason is that there’s been a very deliberate disinformation campaign which has been largely successful. I think it’s more than that, though.

I think there’s a belief that anxiety is something that people can think their way in and out of, and if we believe that people’s problems are on some level their own fault, we can assure ourselves that we’ll never find ourselves in their shoes. In the case of MCS, this also means that we don’t have to make the lifestyle changes that could make a difference. The reaction is understandable, but dangerous.

Yes, there’s a genetic component to MCS, but whether or not you have a profile that puts you at higher risk, you aren’t immune. A 2018 study found that the prevalence of MCS increased over 300% in a decade. And, of course, chemical exposures are linked to a wide range of other health effects, including cancer. Take care of yourself. Take care of those of us with MCS. Please make the changes that will give us all a healthier future.

2023

Yes, it’s December and this is my first blog post of the year. I have lots of them floating around in my head, but I’ve had trouble getting them out into the world. I appreciate those of you who’ve checked on me to see what I’ve been doing instead of writing. Here are a handful of the reasons I’ve been missing from the blogosphere.

1. I wanted a better way to manage my email list and contact those of you who signed up to get notified when I publish a new post. (I’m very grateful for all of you and your interest!) Unfortunately, my brain is old and starting to balk at learning new things, especially when it comes to technology. I managed to get about 80 percent of my contacts imported into a new program, then it started glitching and I just didn’t have the patience to figure it out. Every time I thought about writing a post I would also think “but I have to figure out the email thing first.” I didn’t want to have to figure it out, so it became easier not to write. (And no, I still haven’t completely switched to the new system, but I’m going to write this post anyway.)

2. I’ve been experimenting with other ways to get my message across and trying to figure out what’s most effective. Besides writing this blog, I post short toxin-related news items on Facebook and X and I comment on other people’s posts when appropriate. I’ve kept up with those efforts a little better than I’ve kept up with the blog. I hope in 2024 I can manage to do both more consistently.  I also contributed a chapter to a book on grace that was published this year.

3. I’ve been trying to free up more time to write by lowering the amount of maintenance chores in my life. I have a large yard and keeping up with it takes significant time and energy (and often means tick bites, which as a chronic Lyme disease sufferer I’d really prefer to avoid). I was determined that this would be the year that I’d finish turning all the weedy mulch nearest the house into easier-to-maintain hardscapes, so for the first part of the year, before the event I’ll talk about next, I pushed hard to get it done (while writing blog posts in my head). No, I didn’t meet that goal, either, but I made some good progress. 

4. The biggest reason that I didn’t write much was that I spent a good portion of the year on the bottom rungs of Maslow’s hierarchy of needs. As I mention in my book, the basics of food, clothing, and shelter are all hard to manage for people with chemical sensitivities, and shelter is probably the hardest domain to conquer for most of us.

   What happened for me this time around is that the chimney flashing started to leak, a roofer came to repair it, and that set off an unfortunate chain of events. I’ll spare you the full story, but the short version is that I had pain and other symptoms that were significantly worse when I was in certain parts of the house. A little sleuthing led to the surprise discovery that there was a big gap above a duct that led from my living space into the attic, so attic air was freely flowing in. What I finally deduced was that the roof work must have stirred up some mold-laden dust (there was probably mold in the roof decking from the leak) and the spores and mycotoxins made their way into my breathing space. 

   Many people with chemical sensitivities are also very sensitive to mold. It's hard to describe, for people who aren’t highly reactive to it, how little exposure it takes to cause severe inflammation and how much cleaning goes into making a place tolerable again after a mold event. There are various names for the process in the mold community, but I’ve always called it ESI cleaning, which means “every square inch.”  There are a lot of square inches in a home and all its contents, and sometimes the whole process has to be repeated multiple times. It probably seems ridiculous to people who can’t even see or sense the problem, but it’s what some of us have to do.

   For a while I couldn’t sleep in the house safely, and my fear was that it might turn into a permanent situation, which happened in my previous home. I no longer have the campervan I slept in then, but I do have a screen room on the back of the house which I thought I could use for that purpose. Unfortunately, I discovered a roof leak and resultant mold in there, too, so that project got added to the list. It was a lot to do, especially given how bad I was feeling, and writing didn’t happen while I was focused on it. Anyway, I’m pain free and comfortably inside my house again and I’m grateful.

That’s my personal 2023 report. On the toxin front, my award for chemical of the year (really a group of related chemicals) goes to PFAS. At this point 15 state governments have pursued legal action against companies believed to be responsible for polluting the water and soil with it. I’m always curious about why any given toxin can be ignored for decades, then suddenly break into public consciousness. My guess is that this time it was the movie Dark Waters that did it. I think we need more movies about toxins.

Microplastics have also been getting a lot of attention. I would give them runner-up status. Sometimes people call PFAS “forever chemicals” and microplastics “everywhere chemicals.” As all chemicals do, they also interact. PFAS has been found in pesticides, which they pick up from the plastic containers they’re stored in.

If you’ve read all this and you’re interested in toxins and in my life, I’m truly grateful for you. Thanks for being with me on this journey.  Stay tuned.  My goal is to get one more post (that’s not about me) published before the year is over.  We shall see . . .

The Verb of God

The Word became a human being and lived here with us (John 1:14, CEV).  It’s a beautiful truth for any time of year, but one that’s in the forefront as Christmas approaches. The Word existed in the beginning, John tells us, giving light and life to all. Then, so humans could become children of God, the Word entered our world.

Like most Christians, I’ve always found the passage to be a deeply meaningful meditation on Jesus. It sank deeper in me, though, when I first read it in the RVA version of my Spanish Bible. “En el principio era el Verbo . . . y aquel Verbo fue hecho carne,” I read. “In the beginning was the Verb . . . and that Verb was made flesh.”

Jesus was God’s Verb. I was so taken by the idea that I remember exactly where I was sitting when I read it. I was on a wooden pew in a church in Peru, on the right side and about halfway back, and when I read the passage I stopped hearing anything being said.

I’m not equipped to make a case for whether or not “Verb” is a good translation for “Logos,” the word used in the original language. Logos is evidently a complex term not easily translated into either English or Spanish. I just want to sit for a minute with the idea of Jesus as God’s Verb and let it trickle down and add new flavor to the Christmas story.

Verbs are action words. They’re more than being: they’re doing. You can’t have a sentence without one. Because he wanted to give us the right to become children of God, Jesus came. He took the noun of God’s love and made it a verb.

I think the idea has implications for how we experience Jesus and for how we reflect his character, too. It’s easy to get stuck in the “being” place. We’re new creatures. We’re reborn. We’re God’s children. That’s an immeasurable treasure, but maybe in some sense it’s not a full sentence. To follow the Verb of God means that being leads to doing.

As Christmas approaches, I hope we can not only reflect on the amazing truth that Jesus entered our dirtied, hurting world for us, but on how we can follow his example of loving excluded people with our hands, feet, and voice as well as our heart. Do you know someone with a chronic illness or disability, for example, who could use some “verbing” from you? Meeting practical needs is a way to follow Jesus into the world. It’s a way to return love to the one who loved us so much that he became flesh.

Defending the Church

I recently heard a pastor with autism talk about the challenge of trying to represent both the Christian community and the autism community and I felt his dilemma deep in my soul. I experience the same tension, with one foot in the Christian world and one foot in the world of people with chemical sensitivities. In order to speak for the chemically sensitive, and for those with other illnesses and disabilities, I have to point out blind spots in the church and talk about things the Christian community isn’t doing particularly well right now. On the other hand, my Christian faith is the foundation of my life, I truly value what the church can offer, and I want my fellow travelers to know the hope and peace that can be found there.

Several times in the past few months, people have commented to me that they think religion (and Christianity in particular) has done more harm than good. Given that, and the fact that I’ve written more posts than usual lately that are critical of the church, I thought I’d turn the tables today and briefly highlight a few tangible ways the church makes a very positive difference in the world.

Let’s start with the United States and with the impact of faith-based social initiatives. It’s not easy to fully quantify that, but a 2016 study tried. Researchers from Georgetown University and the Newseum Institute looked at the economic impact of religious congregations, institutions, and businesses and determined that the economic contribution of religion in America was $1.2 trillion, which is equal to the world's 15th largest economy.

As one of the study authors put it, “In an age where there's a growing belief that religion is not a positive for American society, adding up the numbers is a tangible reminder of the impact of religion. Every single day individuals and organizations of faith quietly serve their communities.” They noted that religious organizations ran 130,000 alcohol and drug abuse recovery programs, 121,000 programs offering support and training for the unemployed, and 94,000 programs supporting veterans and their families.

Feeding people is also something religious communities do well. A 2022 article in the journal BMC Public Health analyzed food banks in 12 states and found that 63% were faith-based operations. The article notes that many volunteers are motivated by their religious faith and warns that as America sees a decrease in religious participation we may also see less food assistance.

How about the impact of western Christians overseas? In 2012, an important study was published, which was based on 15 years of research and won awards from the American Political Science Association and the American Sociological Association.  It was entitled “The Missionary Roots of Liberal Democracy,” and as the title implies, it determined that Protestant missionaries greatly influenced the rise and spread of democracy around the globe.

The study author, Robert Woodberry, notes that the effects are “quite huge.” They also seem to be dose-dependent. An article on the study says this: “The more missionaries that came, the longer they stayed, and the more freedom they had, the better the outcomes, even a century or two on. Woodberry checks these off: longer life expectancy, lower infant mortality, higher literacy and educational enrollment, more political democracy, lower corruption, higher newspaper circulation, higher civic participation, and on and on.”

We all base our perceptions on experience as well as objective data, and if you’ve felt hurt by the church, your feelings are valid and I’m sorry for your pain. There’s more to the story, though. No, the church doesn’t always do everything right, but it does a lot more right than we often give it credit for.

Religious Organizations and the ADA

In a previous post about the Americans with Disabilities Act (ADA) I made a brief comment about churches being mostly exempt from the law, but I didn’t give the reason. Simply put, religious organizations are exempt because they fought to be.

I knew that, but assumed it was only because of financial concerns. Recently, though, someone in one of my online support groups posted a link to an eye-opening article and I learned I was wrong.

The author, Shannon Dingle, notes that the representative for an association of Christian schools argued for exemption because religious institutions are “morally required . . . to discriminate against carriers of AIDS where AIDS was incurred through immoral conduct.” In other words, the argument was that it was morally right to deny access to people with chronic illnesses and disabilities because of the possibility that some people’s challenges might be their own fault. That’s a truly amazing and appalling line of reasoning.

The representative also argued that “nothing has been shown to indicate that there is a national necessity to apply the ADA Bill to churches, religious schools, and other ministries.” Nothing? How about the teachings of the Bible?

How about the story of the Good Samaritan in Luke 10? Jesus compared his compassionate concern to the actions of religious leaders who ignored the needs of someone with an injured body. How about Jesus’s anger at the money changers in the temple (Mark 11)? They were keeping a group of people from accessing their place of worship while the religious elite were able to worship freely in theirs. 

What about passages like Ezekiel 34? God says to the religious leaders, “You have not taken care of the weak. You have not tended the sick or bound up the injured. . . . You abandoned my flock and left them to be attacked by every wild animal.” What about Matthew 25? God says that when we meet or ignore the needs of those who are sick or otherwise suffering, it’s as if we’re doing it to him.

The fact that churches aren’t required to provide access to people with disabilities leads them to forget we exist. I don’t think the average church leader or member has any idea how many of us there are (26% of all adults in the United States) or how completely inaccessible places of worship tend to be. 

It's no surprise that there’s a great deal of emotional pain among the chronically ill and disabled from being systematically shut out of church. Whether or not government requires them to do the right thing (the actual right thing, not the right thing as it was defined in the exemption argument), every church has the choice, and disabled people are acutely aware of the choices that are made.   

Dingle puts it this way: “Disabled people didn’t leave the church. The church didn’t even leave us. No, we were never welcome.”

She adds, “It takes all the forgiveness we can find to love churches that didn’t want us. . . . Hopefully, someday the church will love us back.”

Abused: The SBC Report and What It Can Teach Us

I imagine most people with Southern Baptist ties are reeling this week from a bombshell report that concluded that leadership consistently chose to protect themselves legally instead of protecting church attenders from sexual abuse. As one Twitter user put it, when something is outrageous, the proper response is outrage.

I’m outraged. I’m also not completely surprised, because I’ve already seen the dark side of church culture. Once I was an insider – a preacher’s kid who grew up to be a minister’s wife and a missionary. Then I became an outsider – someone with a chronic illness/disability that keeps me out of most church buildings because of the product choices people make. Believe me, the view is different from here.

The way that leadership treated the women who came forward with abuse allegations is eerily similar to the way that people with chemical intolerance or other illnesses or disabilities have been treated. As I put it in my book, if ignoring us doesn’t work, we’re labeled, blamed, viewed as a problem, beaten with the Bible, and judged like Job. Abuse survivor Christa Brown said that church leaders shunned and disbelieved her and communicated “you are a creature void of any value—you don’t matter.” I can’t count the number of times that someone in the chemical illness community has said the same thing.  

People in power are saying the right things now. Here are a few good quotes from denominational leaders. 

“This is the beginning of a season of listening, lamenting, and learning.”

“This much is clear: we have much, much work to do.”

“Every cry for help deserved to be heard.”

This is a time to deal with the issue of sexual abuse and to listen closely to what survivors are saying. I also pray that the courage and tenacity of those who came forward will change the culture enough that the disability community will be heard, too.  

As churches are wrestling with the report, I hope they’ll take a broad view when they answer these questions.

1.     Is it dangerous to come to your church? In the context of the report, the danger is sexual abuse, and it’s a real danger which deserves focused and intense attention. However, it’s not the only threat. When you don’t choose non-toxic options when you build, renovate, clean, treat your lawn, or deal with pests, you put people’s health and sometimes their very lives in danger. I know it’s hard for people who haven’t had to learn about the dangers to really believe that, but it’s true. For people dealing with chronic illness or disability, church can also feel emotionally dangerous, for reasons I’ve already mentioned and more.

2.     Who or what are you defending?  This is a question that has stuck with me since I heard a women’s minister say it during a forum on racial reconciliation.

The report indicates that leaders were defending the image of the church instead of defending the people that attended. Are churches doing that when they choose to build a building that looks impressive instead of one that doesn’t make people sick? What about when they say they can’t put a notice in the bulletin about coming fragrance free because it might offend people? Who are they defending? People who have power or the vulnerable and outcast? 

When I first became part of the chemical illness world and I started hearing the stories of how people were ignored, dismissed, or denigrated by their faith communities, my first reaction was to defend the church. At some point, though, I realized I couldn’t do that anymore. I still love the church and the people in it. In fact, it’s because I love it that I want it to be safe and accessible for everyone. I can’t defend it, though. Something is very wrong and we need to fix it.

SBC president Ed Litton is optimistic. He says, “I think the trauma of what we’re seeing at this moment is waking people up to the need for culture change.” May it be so.

Life and Death

I’ve discovered something about myself. It’s extremely difficult for me to write about people who lose their lives because of avoidable chemical exposures.

Of course, that category is very large when you consider the role that chemicals can play in conditions like cancer and heart disease. The long-term consequences of using common chemicals can be heartbreaking, but I don’t find them as difficult to write about as the more sudden deaths.

When I hear about people who have a chemical exposure that immediately takes their life, my writing muscles seem to freeze. I just can’t come up with anything to say. On this blog, I did manage to write about three different young people who all died after using spray deodorant, and in my book, I shared the story of two babies who died after pesticides were applied in a neighboring apartment and of workers who died after using a wax remover.

What I’m currently having trouble wrapping my words around is a different sort of life and death scenario. It’s the story of two women with MCS in Canada. Both looked for safe, affordable housing for years and had doctors and others advocating for them. Both were unable to find an affordable home that kept them free of chemical exposures. Feeling they had no other options, they applied for MAiD (Medical Assistance in Dying) and were approved. Sophia ended her life in February. Denise is currently still alive.

Once again I find myself freezing up, unable to find the words to express my horror at this. It’s not that I’m shocked when people with chemical illness choose to die. During the first six weeks after I moved to Tennessee, there were three suicides among my online acquaintances. The pace isn’t always that brisk, but it certainly isn’t a rare occurrence. What makes this worse is that it’s officially sanctioned. People in positions of power decided that it’s acceptable to help people die instead of helping them find a way to avoid the very preventable suffering they endure from chemical exposures.

Fortunately, I don’t have to come up with the right things to say. I can just paste in this link, which takes you to two video clips and a written account of Denise’s story. I really hope you’ll take a look.

I do have one small complaint about the otherwise good coverage. In one of the video clips a reporter says that Denise needs “incredibly specific living conditions.” She has mobility issues, which makes housing more challenging than for someone without them, but avoiding the chemicals that make her so sick she wants to die is completely doable if people care enough. The article says Denise needs to avoid cigarette smoke, laundry chemicals, and air fresheners. Sophia, who died in February, had a similar wish list. She just needed a place to live that was free of cigarette smoke and chemical cleaners.

These quotes sum up the issue.

About Sophia: “It’s not that she didn’t want to live. She couldn’t live that way.”

About Denise: “Denise says she does not want to die, but she can’t find a place to live.”

There are a lot of reasons to force myself to write this post. One is to ask people to pray that Denise will find a safe affordable place to live before it’s too late. Another is to say this: People with severe MCS don’t get symptoms that are simply uncomfortable or inconvenient. Reactions can be life threatening or so incredibly painful and hard to manage that people no longer want to live. We don’t practice extreme avoidance just for fun.

To a large degree you hold our lives in your hands. What you do in your home matters to people around you. It matters a lot if you live in an apartment building, but it can also matter if you live in a detached home. Fumes from your laundry products are pumped into the neighborhood from your dryer vent. The chemicals you use on your lawn fill your neighbors’ air. If you idle your car in the driveway, paint your house with a toxic paint, or spray the exterior of your home for bugs, everyone around you is affected.

Choosing products to use in and around your home may seem like a minor choice. Sometimes, though, it’s actually a matter of life and death.

I Hear Doors Slamming Shut: A Response to Tish Harrison Warren

I saw the headline “Why Churches Should Drop Their Online Services” and I felt myself tensing up. Would writer Tish Harrison Warren even address the issue of people with chronic illness or disabilities? What would her reasoning be for shutting the doors of access that had so recently opened? 

Because the New York Times opinion piece was behind a paywall, I wasn’t able to read it until Saturday, when a friend with a subscription shared it. As a result, I’m a little late to this conversation. On the positive side, the delay has given time for plenty of other people to say important things that I can quote.

First, here’s a brief synopsis of the argument Warren gives for dropping online services. She says that dropping the online option is “the way to love God and our neighbors” because our bodies “are part of our deepest humanity, not obstacles to be transcended through digitization.” She believes that online worship diminishes us as people because only in-person gatherings let us worship with our whole heart, soul, mind, and strength. She doesn’t think having both online and in-person options is appropriate, because “offering church online implicitly makes embodiment elective.”

Warren did address the illness/disability question. She said, “No longer offering a streaming option will unfortunately mean that those who are homebound or sick will not be able to participate in a service. This, however, is not a new problem for the church. For centuries, churches have handled this inevitability by visiting these people at home in person.”

I have many, many thoughts about what she has to say. Here are a few of them.

1.     When Warren asserts that dropping the online option is the way to love God and our neighbors, the question that comes to mind is the same one that the law expert asked Jesus in Luke 10:29: “Who is my neighbor?” The parable of the Good Samaritan, which followed the question, contained an account of religious leaders who ignored someone with a wounded body. They evidently didn’t consider him a neighbor, so the instruction to “love your neighbor as yourself” was one they could comfortably ignore. Am I your neighbor? Restricting my access to corporate worship is certainly not the way to love me.

I also truly fail to see how shutting people out is somehow the way to love God. Matthew 25:40 tells us a good way to do that. “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’”

2.    When Warren says that bodies “are not obstacles to be transcended through digitization” I wonder if she believes in trying to transcend our physical limits at all. Should we stop praying when we’re hungry or sleepy? Should we stop singing praise songs when we have an itchy mosquito bite? We find ways to transcend the challenges of our bodies all the time. Transcending is a good thing. If my body won’t let me in your church building (or, said another way, you won’t let me in by not making your building accessible), give me an online option so I can transcend.

3.    Worshipping with our whole heart, soul, mind and strength looks different to people with varying levels of physical health. When I worship from home, I AM worshipping with all my strength. My physical limitations and need for online access don’t “diminish” me and my online presence doesn’t somehow weaken the church.

4.    The idea that offering an online option makes in-person worship an elective only applies to people for whom it was already an elective before the online option arose. It was impossible for me to attend in person before online options came to be and it will be impossible if online options go away.

5.    No, the fact that there are people who are homebound isn’t a new problem, but we have new solutions, and when they’re already in place, it seems foolish (and greatly lacking in compassion) to remove them. I also take issue with the assumption that churches have met the needs of the disabled and chronically ill population by visiting people at home. There’s so much I could say on the topic, but I’ll simply note that only a tiny percentage of homebound Christians I know get any sort of in-person visit, and even when they do, they would still like to hear the sermon. Also, how do you reach new people? How do you identify the homebound who are shut out of your church?

6. A few months ago I read Warren’s book “Prayer in the Night.” In it, she talks about the vulnerability of joy — the idea that even in joyful moments, there can be a sense of melancholy because we feel their impermanence. I felt the vulnerability of joy when churches began to digitally open their doors to those of us who’ve been shut out. It’s ironic and sad that Warren is now advocating for making a joyful reality unnecessarily impermanent.

Other Voices 

These are some of the things I’ve read in response to Warren’s piece that I think are worth sharing.

***

A Baptist News article quotes pastor Marc Schelske who said that after going online “it only took a few weeks to learn that we were doing something we should have done years ago. . . . The view of embodied worship on display in the op-ed is only one that works for able-bodied people with weekends off work. There’s just no way around that. I love gathered worship. I love the comfortable practices and traditions I’m used to. But the pandemic has made it clear that those comfortable practices were also exclusionary, and I’m convinced that following Jesus must lead us toward hospitality and inclusion.”

***

A Religion Dispatches article entitled Ending Zoom church is a great idea for a column – provided you completely ignore the disability perspective includes some important insight from disability advocate Samir Knego. He says, “There’s something deeply condescending and ableist about the idea that proponents of online church options don’t believe or understand that ‘bodies . . . are part of our deepest humanity, not obstacles to be transcended through digitization.’ Bodies that require assistance are still bodies.” 

Knego also notes that he’s not surprised at the idea that people with physical challenges should be relegated to “an apparently inferior level of engagement with worship.” He says the idea “frames disabled parishioners as the objects of charity rather than allowing us to attend church on our own terms.”

“Disabled people are so rarely believed to have spiritual insight in our own right,” he adds. “At best, we’re an example for nondisabled people to learn from, or feel happy that they aren’t like us. . . . . If you don’t think—or care—that disabled people are part of your community, then perhaps it’s not surprising that you won’t feel the need to include or consider us.”  

***

A Religion News article entitled “Streaming online has been a boon for churches, a godsend for isolated” quotes from a Texas A&M report which found that “with the shift online, churches were shocked to discover the ways that an online service can become a wide-reaching net.” The article also reports on a study of the pandemic approach of 2,700 congregations from 38 denominations which found that “churches with a hybrid approach — with both in-person and online services — saw reported worship attendance growing by 4.5%. Churches that only met in person saw attendance decline by 15.7%.”

***

From a Sojourners article by Melissa Florer-Bixler:

“I care deeply about the embodied experience of people physically distant from the place where some of us gather for in-person worship. The people who utilize Zoom worship do, too. They would love to be near children running across the sanctuary and to feel the bass line hum in the air. They would prefer if dementia, Parkinson’s disease, and compromised immune systems didn’t keep them from pressing their palm into the hand of another or bringing a piece of bread from a common loaf to their lips.”

“Rather than shutting down our Zoom option, our worship commission met to discuss how we can creatively and intentionally deepen participation and fleshy community among those who are separated from localized worship and fellowship. We decided to have one of the weekly scripture passages read by someone on Zoom. We’ve asked some families to prepare special music, sung from their living rooms.”

***

And finally, in a post called Why Churches Should Continue Their Online Services, Danny Guldin says this:

“Yes, our bodies are important. Yet, they do not define who someone is or can be. Our bodies are fragile. The love of God is not.“

 “Many churches made technological leaps they would never have made had we not been pressed to do so. Online worship is not a problem to be solved; instead, it is a gift that empowers the church to reach more people than ever before and expand our idea of what the Christian community can truly be.”

Life in Bladeland

Once upon a time there was a land full of razor-sharp blades. They covered surfaces and flew through the air. There were big ones and small ones, sticky ones and ones that could be washed away. They were so much part of life in Bladeland that most inhabitants didn’t give them much thought, or they believed they were good or needed. The citizens assumed that their leaders would protect them from things that would harm them, so surely the blades must be safe.

Most of the inhabitants of Bladeland had an armor of sorts: a thick coating on their skin that protected them from feeling immediate effects when cut. People had different types and thicknesses of this coating, though, and everyone’s coating could get thinner as it was shaved down through encounters with the blades.

There was a group of people in the land who had very little defense from the dangers in the environment. Some of them were born with a thinner protective coating and some had originally had a thicker one, but it had been cut away. Life for thin-coaters was very challenging. They were constantly getting wounded, often very deeply, and with serious consequences. They spent most of their time, energy, and money trying to fashion or re-grow their protection or avoid the blades that threatened them wherever they turned. They studied and went to see experts. They learned about their bodies and the danger of the blades.

Thin-coaters saw the blades’ danger in a way that thick-coaters didn’t. They asked people to please remove them from shared spaces. They warned thick-coaters that they could easily end up with their protection cut down. Because thick-coaters had a different experience with the blades than thin-coaters did, it was hard for them to hear the warnings or believe the experiences that were shared. They sometimes saw thin-coaters as confused or exaggerating. The more that thin-coaters made their needs known or warned of the dangers of the blades, the wider the gulf between them grew.

Thin-coaters found themselves with no good choices. They couldn’t safely access most workplaces, medical facilities, schools, churches, or shops. They couldn’t generally join clubs or visit in people’s homes. They tried to make their own home environments as blade-free as possible, but it was hard to balance the physical need for safety with the emotional need for connection.

Sometimes thin-coaters had no choice but to venture out, or they decided the physical cost was worth the emotional gain. When they left their homes, they chose to go to spots with fewer blades, or more escape routes. Because thick-coaters paid very little attention to the blades, they didn’t see or understand the differences in the environments. It didn’t make sense to them that a thin-coater could go to one office building, shop, or home, but not another. Sometimes they told thin-coaters they were lying, manipulating, crazy, or just avoiding something they didn’t really want to do.

When thin-coaters were around others in blade-rich environments, they had a decision to make. Should they let people know how much they were being affected or should they hide their pain and try to manage as long as they could? Either way, they risked ridicule and disbelief. If they let their symptoms show, asked for accommodations, or took obvious steps to avoid getting cut, they were often accused of being selfish or attention-seeking. If they hid their pain, thick-coaters sometimes came to the conclusion that thin-coaters had been exaggerating all along, and that obviously the blades didn’t hurt them as much as they said they did. Thin-coaters wished others would believe them and trust their knowledge and character, but they didn’t know how to make that happen.

That’s how life was in Bladeland. Everyone was getting hurt by the blades, but some saw the effects more immediately or obviously. People fought each other instead of fighting to make Bladeland safer for all. Thin-coaters were deeply grateful for the thick-coaters who were advocates for them and the cause, but there didn’t seem to be many of them around, and the voices of the others were loud. Progress was slow. Would things ever change?  Thin-coaters were tired of the struggle, but what else could they do but keep trying to explain?  What else could they do?

A Hairy Problem

‘Tis the season for ads that tell us all the ways we don’t measure up and promise to fix it for us. Among all the “keep up with the Joneses” commercials are a good number of “you don’t look good enough for holiday gatherings” offerings. You must whiten your teeth! You must get rid of your wrinkles! You simply must do something about your hair!

I’ve been thinking about hair in particular ever since I watched the CMA awards this year and saw Mickey Guyton’s show-stopping performance of “Love my Hair.” Guyton, who’s black, wrote the song in response to an incident in which a young black girl was sent home from school because her hair didn’t meet the school’s dress code requirements.

Most of us haven’t faced anything quite that in-your-face when it comes to not meeting appearance standards, but it doesn’t mean we don’t get the message. Every culture has a standard of beauty, and the farther we think we are from it, the more time, energy, and money we’re likely to spend on trying to hit the mark. Unfortunately, that’s not all it can cost us. Beauty products are mostly unregulated and untested and can also cost us our health.

Sickening Beauty

We don’t know all we need to know about the health effects of commonly used products. We don’t even know everything that’s in them. As a Guardian article notes, the single word “fragrance” can mean a combination of 50 to 300 different chemicals. The same article also quotes an expert who says, “No state, federal or global authority is regulating the safety of fragrance chemicals. No state, federal or global authority even knows which fragrance chemicals appear in which products.”

What we do know about personal care products is alarming. The documentary Toxic Beauty (which is well worth watching) notes that many products we use every day contain chemicals which are endocrine disrupters, meaning they mess with our hormones. We have over 50, including insulin, serotonin, melatonin, cortisol, thyroid, and reproductive hormones, and disrupting them can have wide-ranging effects. The film reports surprising product ingredients, such as coal tar in soaps, creams, and lipstick; arsenic in toothpaste; mercury in skin lighteners; and formaldehyde in deodorant and shampoo. The long list of potential health effects of the nine products they list includes cancer, heart disease, infertility, miscarriage, tremors, cognitive dysfunction, lung disorders, kidney damage, insomnia, and depression.

The Gender and Color Gap

There are products almost all of us use (soap, shampoo, deodorant, and toothpaste), products more women use (makeup and nail products), and products used more by women of color (skin lighteners and hair straighteners). A Popular Science article reports that the average white woman in America is exposed to 168 personal care chemicals every day and that for women of color, the number is even higher. Not surprisingly, women, and black women in particular, have a higher body burden of the chemicals generally found in cosmetics.

Most of us aren’t going to give up soap and shampoo, but we could give up other products if we decided not to try to conform to arbitrary standards. It’s a great goal, but there are reasons we don’t. There’s plenty of research showing that physical appearance affects career success and all sorts of other things. Personally, I wear less makeup and use far fewer products than I once did, but I do still make a bit of an effort to look culturally acceptable. I feel the pressure as an aging white woman. I can only imagine the pressure for women of color.

Actually, I don’t have to just imagine. I certainly have no idea what it’s like to be black or brown in the USA with all the history and cultural baggage that entails, but I did live in Central and South America for a decade, so I know what it’s like to have skin and hair that don’t fit. I know what it’s like to be told by my friends about places I shouldn’t go because the color of my skin made it too dangerous. I know what it’s like to be pulled over while driving because of how I look.

On one hard-to-explain occasion I realized how much I had internalized the message that a normal skin tone was one that was different than mine. I drove past a brown skinned woman holding a white skinned baby and thought “That baby looks odd. He’s so white.”  It took a few beats for me to remember that I was pregnant and that my own baby was going to look like that. It took a few more beats to recall that I myself had that same strange skin.

And then there’s hair. There’s only so much we can do to change the color of our skin, but there’s a lot we can do to our hair. When I was younger and sillier, the combination of not loving my hair and not focusing on chemical dangers prompted me to get a perm. Because I lived in a country where my hair was different from the norm and the hairdresser was unfamiliar with hair like mine, the results were fairly disastrous. It led to the following conversation with my 3-year-old son.

Son: Why did you get your hair big?

Me: I thought it would be pretty. Do you think it’s pretty?

Son: No.

My point is simply this: As much as I believe the goal (for all of us, white, black, and brown) should be to get to a point where we celebrate ourselves and each other for the uniquenesses of our individual bodies, I know there are also valid reasons we try to fit in. I also understand the added pressure of being farther from the norm. So if we aren’t going to give up all the things we think will improve our appearance, we need to make sure that what we’re using isn’t going to make us sick.

Choosing Healthier Products

Fortunately, not all personal care products are created equal. The Skin Deep database is a good place to look for information on healthier options. Unfortunately, there’s disparity in product offerings as well. In 2016 the Environmental Working Group evaluated more than a thousand products marketed to black women and concluded that there were fewer healthier choices in that category.

The good news is that often we can achieve our goals without having to purchase manufactured products at all. Simple, natural ingredients can work surprisingly well in many instances. It does take time and experimentation, though, to find what works best for you. As people around me may have noticed, my experimentation with DIY mascara isn’t going particularly well (but I haven’t given up!) At least I haven’t had the experience one chemically sensitive woman shared. She used something a bit sticky on her eyelashes, then went to church and shut her eyes to pray. When she tried to open them again, she found they were stuck together.

Whatever the current state of your eyelashes, I hope you feel beautiful today (or handsome, for the guys reading this). I hope you never have to choose between trying to meet beauty standards and your health, but if you do, I hope you choose to protect your health. I hope you’ll remember that you’re made in God’s image and are his absolute masterpiece. I also truly hope you love your hair.

Is Your Church Telling the Truth?

Sometimes churches don’t tell the truth. I’m sure it isn’t conscious or done with malicious intent, but sometimes they misrepresent themselves. I tend to have this thought every year at this time, when discipleship groups get started again after the summer break. I’ve listened to churches promote them for years, and often my response to their catchy slogans is “That isn’t true.” 

The slogans that provoke that response are the ones that say there are groups for everyone. That generally means there are selections for different ages, for men and women, and meetings at different times of the week. It doesn’t mean there’s at least one that’s physically accessible for people with illness or disability or that there’s an online connection option. “Everyone” doesn’t tend to mean me, or those like me. These are some of the slogans in that category:

• There’s a place for you

• We’ve saved you a spot

• Our doors are wide open

There’s another category of slogan that doesn’t cause me to think “That isn’t true,” but to respond with “I can’t.” Those are the invitation slogans. Some examples:

• Come as you are

• Come grow in grace

• Be part of our family

• Find a place of connection

• Join the fellowship

There are many of us who would join you if we could. How do we do that? Can you make a way? When we hear those invitations, it feels like we’re standing in a group and someone is inviting everyone else to a party, but leaving us out. It’s awkward. It’s painful.

A final category is the “statement of truth” slogan. I can agree with them, but don’t have any idea how to act on the agreement. For example:

• We’re better together

• We need each other

• Life isn’t meant to be lived alone

My internal response is “I know that, but I can’t address it without your help.”

Is your church telling the truth about being open to all? Are you inviting people in with one hand, but keeping them out with the other? Are you acknowledging needs but not meeting them? Maybe it’s time to make some changes.

Dust, Debris, and Unanswered Questions

Folks who’ve been reading this blog for a while know that I love the Biblical book of Job and I return to it on a regular basis. Here are a couple of new musings. 

I’ve been studying the book with a group, and last week we looked at what’s probably its best known verse, Job 19:25. That’s the spot where Job, in the middle of striving with his friends who just keep insisting he must have brought his sufferings on himself, seems to change the subject and suddenly declares “I know that my Redeemer lives, and he will stand upon the earth at last.” (NLT)

I learned a couple of interesting things about this declaration. The first is that the word often translated “earth” can also be translated “dust.”  Other translations of the term include ashes, debris, rubbish, or rubble.

This brings new images to mind, doesn’t it?  Maybe the idea is that when everything that once seemed solid deteriorates, collapses, or crumbles to the ground, what we can count on to still be standing is our loving, rescuing God. Author Terry Betts explains that the verse literally says that our redeemer will “stand against the dust.” He’s the counterpoint. He’s the one who says “The dust is not the end. I can use it to create new life.” The Literal Standard Version says “He raises the dust.” 

The second thing I had never really noticed about this verse is what comes immediately before it. In verses 23 and 24 Job says, “Oh, that my words could be recorded. Oh, that they could be inscribed on a monument, carved with an iron chisel and filled with lead, engraved forever in the rock.” 

What words did he want engraved? The ones he used to maintain his innocence. He was undoubtedly worn out by the unending conversations with his friends and of the constant need to defend himself and his integrity. Betts says “He feared he would die before he was vindicated and cleared of all the false accusations his friends had cast at him. He wanted a permanent statement that would put the record straight.”

It’s in this setting that Job talks about his redeemer, a term which carries the idea of being freed from bondage or oppression by enemies. Job undoubtedly felt oppressed by his enemy-friends. He wanted to be rescued from their false narrative and he believed that God would do it.

Here are a couple of translations of the verse that get at that idea:

“I know that my defender lives.” (GW)  

 “I know there is someone in heaven who will come at last to my defense.” (GNT)

 “I know that my Vindicator is alive.” (ISV)

Yes, our Vindicator is alive and he graciously responded to Job’s desire for a permanent record of his innocence. We have it in the book that bears Job’s name. It’s his vindication, and to a degree it’s vindication for all of us who need it, including those who suffer from poorly understood illnesses that get blamed on sin, lack of faith, negative thinking, hypochondria, selfishness, a desire for attention, or a million other things. I’m so grateful that God recorded Job’s story.

**

The second brief musing is simply a parallel I noticed recently between a passage in C. S. Lewis’s brilliant book “A Grief Observed” and what happens at the end of the book of Job.

At the end of Job, there’s restoration, but God doesn’t directly respond to Job’s statements or questions about his suffering. In fact, Job says to God in 42:3 “You asked, ‘Who is this that questions my wisdom with such ignorance?’ It is I—and I was talking about things I knew nothing about, things far too wonderful for me.”

The restoration came from relationship and not from a totality of answered questions. In 42:5 Job explains, “I had only heard about you before, but now I have seen you with my own eyes.”

“A Grief Observed” is the journal that Lewis wrote after his wife died. He asks many of the questions Job did. God feels distant to him. Then, at one point, there’s this:

“When I lay these questions before God I get no answer. But a rather special sort of ‘No answer.’ It is not the locked door. It is more like a silent, certainly not uncompassionate, gaze. As though He shook His head not in refusal but waiving the question. Like, ‘Peace, child; you don’t understand.’

Can a mortal ask questions which God finds unanswerable? Quite easily, I should think. All nonsense questions are unanswerable. How many hours are there in a mile? Is yellow square or round?  Probably half the questions we ask – half our great theological and metaphysical problems – are like that.”

If you’re struggling today, I know you want answers, and I hope you get them. You may want vindication, and if so, I hope you get that, too. Mostly, though, I hope you can find peace: the peace of knowing that our redeemer lives and can stand against and transform the dust.

Chemicals and COVID-19, Part Two

A few months ago I wrote a post summarizing some of what was then known about the chemical connection to COVID-19. I talked about the link between the disease (cases, hospitalizations, and deaths) and fine particulate matter in the air. I also mentioned chemical connections to some of the risk factors like asthma and heart disease. Some new, potentially important information has come to light since then, so it’s time for an update.

Forever Chemicals

The most significant new information concerns compounds that have come to be known as “forever chemicals” because they’re so persistent. These chemicals are in a class once known as PFCs (perfluorinated chemicals) and now generally called PFAS (per- and polyfluoroalkyl substances). PFAS are currently in the spotlight, due at least in part, I believe, to the excellent movie Dark Waters, which brought them into the public consciousness. 

PFAS have already been linked to a wide range of negative health effects, but it appears we can add something new to the list. They may make COVID-19 worse.  A very recent study, still undergoing peer review, found that people infected with coronavirus who had elevated levels of one particular PFAS chemical had more than twice the risk of experiencing severe illness. What’s especially disturbing is that the particular substance, PFBA (aren’t these acronyms fun?), has been promoted as being safer than others in the class because it leaves the bloodstream more rapidly. Unfortunately, it accumulates in the lungs, which may explain the finding.

The Harvard researcher who found the connection also worries about something else. Previous research has found that people exposed to PFAS had reduced antibody concentrations after receiving tetanus and diphtheria vaccinations. In other words, the chemicals apparently reduced vaccine effectiveness. Will the chemicals also interfere with a COVID vaccine? As he notes, “At this stage we don’t know if it will impact a corona vaccination, but it’s a risk. We would have to cross our fingers and hope for the best.”

Unfortunately, PFAS are even harder to avoid than we previously thought. They’re handy for making things non-stick and waterproof, so an obvious place to start lowering your load is by avoiding products with those sorts of coatings. Seven years ago, when they were still called PFCs, I wrote a post noting that “it seems ironic that PFCs are generally used for their anti-stick properties given the fact that they’re very ‘sticky’ and persistent in the environment and in our bodies.”

Avoiding obviously non-stick products isn’t enough, though. A group of researchers recently attempted to determine just how widespread the use of PFAS has become, and said this: “What we found is deeply disturbing. PFAS are used in almost all industry branches and in a much wider range of consumer products than we expected. Altogether, we found PFAS in more than 200 use categories.” They note that some uses were already known, such as in fast-food containers, carpets, waterproof fabrics, ski waxes, batteries, muffin tins, popcorn bags, dental floss, and fire-fighting foams, but that many weren’t. They found the chemicals in hand sanitizers, mobile phones, a wide variety of cosmetic products, artificial turf, guitar strings, piano keys, pesticides, printer ink, and many more surprising places. PFAS frequently show up in the water supply, and have also been found in food as diverse as meat, leafy greens, and chocolate cake with icing.

Gas Appliances

As I noted in my previous post, the state of the air we breathe (particularly the amount of particulate matter in it) has been linked to the number and severity of COVID cases. Now it appears that long-term exposure to high NO2 (Nitrogen Dioxide) is more dangerous than exposure to particulate matter or ozone and correlates with a higher risk of death from the disease. An article reporting on the finding notes that NO2 is a primary pollutant produced by natural gas-burning stoves and furnaces.

Cleaners and Disinfectants

Last month I wrote an entire post on disinfectants, so I won’t repeat it all here, but I’ll point out that we now know much more clearly than we did at the beginning of the pandemic how the virus spreads, and that knowledge changes the risk/benefit equation of using disinfectant chemicals.  A New York Times article published after I wrote my post was aptly headlined:  “The Coronavirus Is Airborne Indoors. Why Are We Still Scrubbing Surfaces?” It points out that “disinfecting sprays are often made from toxic chemicals that can significantly affect indoor air quality and human health.”

A recent piece in the Washington Post makes the same point and notes that there’s not a single documented case of COVID-19 being transmitted through a contaminated surface. The authors (three professors) give the analogy of cleaning countertops and doorknobs to try to protect yourself from the effects of cigarette smoke in the air. They add that “the use of all of these extra cleaning products releases chemicals into the air that can be harmful to our health.”

Long-haulers

A growing number of “long-haulers” who have persistent symptoms after being infected with the virus are reporting increased sensitivity to everyday chemicals. Many of us with MCS (Multiple Chemical Sensitivity) find familiarity in the story.  All people alive carry a load of manmade and biological toxins inside, and when the load gets too high, sometimes the body turns on a warning system to keep us from being injured further. 

An article headlined “Why Are COVID-19 Long-Haulers Developing Fragrance Allergies?” points out that the main way to cope is to avoid triggers, but acknowledges that it’s difficult to do. Indeed it is. Let’s help ourselves and each other by being very intentional about the products we buy and use.

14 Essential Things to Know About Disinfectants

It’s safe to say that none of us wants to have a serious battle with COVID-19, and to avoid it, we’re reaching for disinfectants in unprecedented amounts. If we’re not careful, though, we can cause ourselves and others health problems that are as potentially problematic as what we’re trying to avoid. Here are some things to know about disinfectants.

1.  Cleaning and disinfecting work in different ways. Cleaning removes germs by washing them down the drain. Disinfecting kills them.

2.  A sanitizer is similar to a disinfectant. The terms “sanitizing” and “sanitizer” are defined differently depending on who’s doing the defining. Sometimes sanitizing is used to mean the process of lowering the number of germs by either cleaning or disinfecting. Others use the term “sanitizer” to mean a disinfecting product designed for use on a person rather than a hard surface, and some say that sanitizers are for bacteria, while disinfectants also target viruses. Yet another definition is that sanitizers kill organisms, but that disinfectants kill both organisms and their spores.

3.  Disinfectants are pesticides. A pesticide is a product designed to kill a living organism. A Texas A&M publication notes, “Pesticides that fight microbes are generally called antimicrobials. . . . About 275 active ingredients are found in antimicrobials, most of which are pesticides and must have an EPA-approved label.”

4.  An EPA registration means the product should kill what it says it will. It doesn’t mean it’s been proven safe. This is from a publication entitled Green Cleaning, Sanitizing, and Disinfecting found on the EPA’s own website: “Many people mistakenly think that if a cleaning, sanitizing, or disinfecting product is sold to the public it has been reviewed and proven safe by government agencies. The U.S. Environmental Protection Agency (EPA) requires that products labeled as sanitizers or disinfectants do kill the germs that the product claims to kill, but the registration review does not evaluate all possible health risks for users of the products. Cleaning products are also not routinely reviewed by the government to identify health risks to the user. Some manufacturers choose to have the EPA evaluate their cleaning products for human health and environmental safety through the Design for the Environment (DfE) Safer Product Labeling Program, but this is voluntary and most products are not reviewed.”

5.  Despite the fact that they aren’t rigorously tested, health effects associated with common disinfectants are becoming more widely known. Chemical and Engineering News published an article entitled “Do We Know Enough About the Safety of Quat Disinfectants?” Quats (quaternary ammonium compounds) are widely used in disinfectant products, but they’ve been linked to a number of potentially significant health issues which have been discovered “independently and also by chance.” These include the possibility of birth defects, fertility issues, and disruption of cellular processes.  

Other disinfectant chemicals have their own problems. A publication entitled Safer Products and Practices for Disinfecting and Sanitizing Surfaces says this: “Although all of these ‘antimicrobial’ products have risks, there are a few types that pose greater, long-term risks to custodial workers and building occupants because they contain active ingredients that have been found to cause asthma (e.g., chlorine bleach/sodium hypochlorite, peroxyacetic acid, and quaternary ammonium compounds), cancer (e.g., ortho-phenylphenol), skin sensitization (e.g., chlorine bleach, pine oil, and thymol) or other health hazards. Several also pose environmental risks as well, such as silver and quaternary ammonium chloride compounds.”

6.  It’s not just the people who use them who are affected. The Green Cleaning publication speaks to the issue of workplace asthma tied to cleaning and disinfecting products. The authors note that 80% of those affected were bystanders who weren’t working directly with the chemicals, but were simply near enough to be exposed to them.

7.  Disinfectants can cause health problems both through inhalation and skin exposure. Disinfectant chemicals, especially quats, tend to accumulate on surfaces. They can then be absorbed through the skin and enter the bloodstream. In an article on chemical exposures in the workplace, the CDC notes that absorption of chemicals through the skin may be the most significant route of exposure in some cases, and that cleaners are among the workers at risk.

For children in particular, the route may be more direct because chemicals end up on hands, and hands end up in mouths. In an “Ask the Professor” column, the authors state that this can lead to intake that’s more than 2,000 times higher than normal. For some disinfectant chemicals, a 3-year-old takes in 55 times more than an adult does.

8.  Disinfectants can’t get to germs on a surface to kill them unless the surface has been cleaned. This has been described as trying to vacuum the floor without picking up the toys and clothes there first.

9.  If a surface has been well cleaned, it may not need to be disinfected. An environmental expert noted that more than 90% of microorganisms on a surface can be removed with soap, water, and a microfiber cloth, which is potentially more effective than using disinfectants on a surface that hasn’t been cleaned. He said, "You always want to be balancing risks and benefits, and you want to be using the safest products possible in the safest way possible. You could use a grenade to kill a fly, but a fly swatter will work just as well and cause far less damage." A guide to safer disinfectants notes that the FDA banned 19 antimicrobial ingredients from soap in 2016, because plain soap and water without the disinfectant chemicals were found to be just as effective.

10.  Disinfectants may not be as important in the fight against sickness as we seem to think they are. A publication on talking to your child’s school about using safer products mentions a study which measured bacteria on children’s hands and on classroom surfaces. The researchers found that the amount of bacteria on hands was associated with how often kids got sick with colds or flu, but that the amount of bacteria on surfaces wasn’t a factor. The same publication notes, “There is no evidence that shows using disinfecting wipes, sprays, or antibacterial soaps are any more effective at preventing illness in the classroom than washing with regular soap and water.” Regarding COVID-19 in particular, the Centers for Disease Control says that “it may be possible” to be infected through touching a surface, but that it isn’t thought to be a primary route of transmission. 

11.  The focus on surface disinfection may distract us from what actually works. An article in The Atlantic calls the widespread use of disinfectants “hygiene theater” and provides this observation: “Establishments are boasting about their cleaning practices while inviting strangers into unventilated indoor spaces to share one another’s microbial exhalations. This logic is warped. It completely misrepresents the nature of an airborne threat. It’s as if an oceanside town stalked by a frenzy of ravenous sharks urged people to return to the beach by saying, We care about your health and safety, so we’ve reinforced the boardwalk with concrete. Lovely. Now people can sturdily walk into the ocean and be separated from their limbs.” 

12.  Disinfectants are often used improperly. Like other pesticides, there are safety laws that govern how they’re used. The Texas A & M article points out that instructions on disinfectant labels aren’t just suggestions. They say, “Using even a little more disinfectant than the label allows in a cleaning solution, or failing to wear the proper safety gear specified on the label, to give two examples, is a violation of state and federal pesticide laws.”

Many establishments are using sprayers, misters, or foggers to apply disinfectant products, which often doesn’t meet label requirements. The World Health Organization warns that spraying or fogging disinfectants “will not be effective and may pose harm to individuals.”

Many people are especially concerned that students in school settings are being given disinfectant wipes for cleaning their own desks. The EPA warns against this, pointing out that labels on disinfectants all say “Keep Out of Reach of Children.”

13.  Their use can lead to stronger, medication-resistant germs.

Benzalkonium chloride (BAC) is one of the most common active ingredients found in disinfectant products, including wipes and antibacterial soaps. Researchers have found that when bacteria is exposed to low levels of BAC, its tolerance can increase up to 500-fold. Microbial resistance is especially likely to develop when disinfectants are used improperly, such as on a surface that hasn’t been cleaned first.

14.  All disinfectants are not created equal. Some ingredients are much more problematic than others. A quick way to gauge the relative toxicity of a commercial disinfecting product is to look at the “signal word” on the label. It will say either “Danger,” “Warning,” or “Caution.”  The products with a “Danger” label are thought to be the most toxic, and those that say “Caution,” the safest. Within each category, there are products with varying degrees of safety. 

Commercial disinfectants are generally mixtures of many different compounds, so even if the first ingredient listed is considered safe, the product as a whole may not be. Fragrances are commonly added to disinfectant products, and they add many chemical hazards without increasing effectiveness in any way.

Remember that you may not need a disinfectant at all if you clean surfaces well (especially with a microfiber cloth), and if you do decide you need one, there are time-tested options. As one expert in environmental chemicals notes, “Hydrogen peroxide, citric acid, or octanoic acid are safe and effective,” and they’re all listed by the EPA as effective against the virus that causes COVID-19. In fact, research finds hydrogen peroxide-based disinfectants to be more effective than quat-based products.

Microbes can certainly cause problems, and so can antimicrobials. I pray you’ll stay safe from both.

Race and Environmental Illness

In the past, I’ve focused most of my attention on toxins we use in, on, or around our bodies, clothes, and homes (or other buildings). I’ve done this in part because there are many things each of us can control, and it seems more manageable and hopeful to focus on those than on things that are harder to change. Also, I find that people tend to be more aware of the potential hazards of outdoor than indoor air and I feel inclined to share information that’s less generally understood.

The full truth, though, is that the state of the air in our neighborhoods can profoundly affect our health and quality of life. In this cultural moment when the nation is focused on racial issues, I feel a need to address the heartbreaking and uncomfortable fact that the air in our neighborhoods and the degree of toxin exposure we experience may be determined in part by the color of our skin. While the country and church are focusing on things we can do better, I don’t want us to overlook this.

Unfortunately, in the United States, dark-skinned people are exposed to more pollution than light-skinned people are. A 2018 study published in the American Journal of Public Health examined the toxic burden from small particle pollution, associated with a wide range of health effects, including cancer, heart attacks, lung disease, and more. The authors note that people living in poverty had a burden 1.35 times higher than the general population, all non-whites 1.28 times higher, and blacks carried a burden 1.54 times the rate of the population at large. An article on the study notes that the degree of toxin exposure is only partly explained by facility location. The data indicates that “the magnitude of emissions from individual factories appears to be higher in minority neighborhoods.”

As the study demonstrates, race is a more powerful factor than income when predicting disparities. Dr. Robert Bullard reports that “African American households with incomes between $50,000 and $60,000 live in neighborhoods that are more polluted than the average neighborhood of white households with incomes below $10,000.” 

Bullard has been researching environmental inequity for decades. In the early 1980s he found that from the 1930s to 1978, 82 percent of waste in Houston was dumped in mostly black neighborhoods. These days he reports that in 46 states, people of color live with more air pollution than white people do and that black Americans are 79 percent more likely than their white counterparts to live in areas where industrial pollution is especially problematic.

Given the differences in toxic exposures, it isn’t surprising to see health differences as well, in many different conditions and diseases. African Americans have the highest cancer mortality rate among racial groups and are more likely than white Americans to report having fair or poor health. In an interview for a Yale University publication, Jacqueline Patterson focuses on lung issues and notes that “An African American child is three times more likely to go into the emergency room for an asthma attack than a white child and twice as likely to die from asthma attacks than a white child. African Americans are more likely to die from lung disease, but less likely to smoke.“ She states that “We have communities that are losing people every day from . . . toxic exposures.”

I was pleased to learn that what’s often called a “landmark” study, “Toxic Wastes and Race in the United States” was commissioned and published by a church-based organization, the Commission for Racial Justice of the United Church of Christ. It was written in 1987, and 20 years later they revisited the issue in “Toxic Wastes and Race at Twenty.” The conclusion of the updated publication was this: “Twenty years after the release of Toxic Wastes and Race, significant racial and socioeconomic disparities persist in the distribution of the nation’s commercial hazardous waste facilities. Although the current assessment uses newer methods . . . the conclusions are very much the same as they were in 1987.”  Today, 13 years after that was written, significant racial differences in toxin exposure still exist.

What can we do to address the issue? I wish I had a simple answer. I hope we can find ways to communicate to the powers-that-be that this isn’t acceptable. I hope we can work together to try to ensure that industry takes human health effects seriously and is held responsible when they don’t.

While we work for more broad-based change we can at least keep from making the problem worse. We can choose not to add to anyone’s toxic body burden, knowing that we all have a tipping point at which our detoxification system can no longer manage everything coming in. People with smaller bodies (generally women and children), those with genetic challenges, and people already dealing with a high toxic load can handle less than others can before their systems become overwhelmed and health problems appear.

Every single product choice we make affects other people as well as ourselves. Others are exposed to our perfumes, laundry products, cleaners, pest-control solutions and more. None of us know which exposure will be the one that’s just too much. I don’t want to be responsible for pushing anyone over the edge into illness. Do you?

Chemicals and COVID -19

A recent study determined that there are more than 350,000 chemicals and chemical mixtures registered for production and use, a number three times as high as previously estimated. Up to 70,000 of these chemicals are described ambiguously and more than 50,000 are classified as “confidential,” leading to an enormous gap in knowledge. Given the woeful lack of data and study, it isn’t possible to fully understand how chemicals in the environment may be making us more susceptible to COVID-19. We do know enough, though, to take some prudent steps.  Here’s some of what’s known at this point:

1. The numbers of COVID-19 cases, hospitalizations, and deaths are all linked to levels of fine particulate matter in the air.

Particulate matter is an airborne mixture of solid and liquid particles. The smaller or finer the particles, the more problematic they are for human health, because they can more easily evade defenses. Several recent studies examined the relationship of particulate air pollution to COVID-19. A study by the World Bank Group found that the level of fine particulate matter was a highly significant predictor of how many confirmed cases and hospital admissions there would be in a geographical area. They report that a pollution increase of 20 percent may increase COVID-19 cases by nearly 100 percent. The researchers controlled for health-related preconditions and demographic factors and note that patterns suggest the number of cases is not simply related to population density.

Particulate pollution is also associated with COVID-19 morbidity. The Guardian reports on a US study finding that “even a tiny, single-unit increase in particle pollution levels in the years before the pandemic is associated with a 15% increase in the death rate.”  It further notes that long-term exposure to particle pollution was already known to increase the risk of death from all causes, but that in the case of COVID-19 deaths, the increase was 20 times higher. The correlation held when poverty levels, smoking, obesity, and availability of COVID-19 tests and hospital beds were factored in. It also held when New York City (with many cases) and counties with few cases were removed from the data pool.

2. Indoor air is generally more polluted than outdoor air.

The Environmental Protection Agency (EPA) states that the air inside homes and other buildings tends to be more polluted than outdoor air even in the most populated and industrialized cities. It’s easy to feel helpless about our exposure to outdoor air pollution, but to a large degree, we can control our indoor environments.

Particulate pollution inside a home or other building can come in many forms. Combustion (burning candles or incense, using a fireplace, etc.) is a significant contributor. Household dust is also a source, and can lodge in carpets, sofas, chairs, curtains, and bedding and easily become airborne when, for example, carpets are walked on or people sit on sofas or chairs. For multiple reasons (some of which I’ll discuss later), it’s wise to address as many sources of toxicity inside a building as possible. Different types of contamination interact. As one website explains, “Particles in air are either directly emitted, for instance when fuel is burnt and when dust is carried by wind, or indirectly formed, when gaseous pollutants previously emitted to air turn into particulate matter.”

3. There are known risk factors for COVID-19 complications, and known chemical connections to them.

The Centers for Disease Control (CDC) notes that people at high risk for severe illness from COVID-19 include those with lung disease or asthma, obesity, diabetes, kidney or liver disease, and heart conditions. The list of chemicals that can contribute to these conditions is long.

Researchers tested 50 types of consumer products for 66 chemicals related to asthma or hormone disruption (associated with diabetes and obesity) and found 55 of them. Implicated chemicals include those found in fragrances, cleaners, cosmetics, plastic, hair care products, detergents, and more. Some of the highest concentrations of problematic chemicals were found in fragranced products, such as dryer sheets, air fresheners and perfumes. Vinyl was also a significant source of exposure.

Because the kidney and liver are involved in detoxifying chemicals, all exposures can stress and affect them. The National Kidney Foundation notes that kidney disease may be associated with herbicides, pesticides, air pollution, and heavy metal exposure. There are at least 123 chemicals associated with fatty liver, according to a study in Toxicologic Pathology. A significant number are found in pesticides (including herbicides and fungicides). Solvents, plasticizers, fragrances, paints, polishes, and dyes are also sources. Heart disease is likewise associated with a long list of chemical exposures, including (according to an article in Interdisciplinary Toxicology) those found in pesticides, cleaning products, plastic, adhesives, paints, and many other products.

4.  It’s wise to choose disinfectants carefully.

In a warning posted soon before COVID-19 became big news, Consumer Reports noted that many people may not know that products labeled “disinfecting” contain EPA-registered pesticides. The report notes that people who use disinfectants and cleaners regularly in their work (janitors and healthcare workers, for example) have higher rates of asthma. According to Newsweek, nurses who cleaned surfaces with disinfectants at least once a week had a 24 to 32 percent higher risk of developing COPD than nurses who used the products less often.

An article entitled Safer Disinfecting at Home in the Times of Coronavirus states that quats (quaternary ammonium chlorides, commonly found in disinfectants) are associated with a list of problems, including breathing difficulty, skin irritation, reproductive harm (including possible fertility and birth defect issues) and antimicrobial resistance. Chlorine bleach can also be problematic. The author recommends using disinfectants containing hydrogen peroxide, alcohol, lactic acid, citric acid, or thymol.

5. Ventilation is our friend.

Information from the 1918 influenza pandemic indicates that fresh air and sunlight seem to have prevented deaths among those infected. An article on the subject reports that “in the 1960s, Ministry of Defence scientists proved that fresh air is a natural disinfectant. Something in it, which they called the Open Air Factor, is far more harmful to airborne bacteria — and the influenza virus — than indoor air. . . . Their research also revealed that the Open Air Factor’s disinfecting powers can be preserved in enclosures — if ventilation rates are kept high enough.”

Adequate ventilation is known to limit the spread of airborne pathogens in healthcare environments. The author of an article entitled Could the Indoor Air Quality of Our Buildings Become Part of the COVID-19 Playbook? asks whether addressing ventilation in other buildings might likewise be part of an anti-viral strategy (which also includes reducing indoor contaminants). The article notes that in their publication Interim Guidance for Businesses and Employers Responding to Coronavirus Disease 2019 (COVID-19), the CDC recommends increasing ventilation rates and the percentage of outdoor air.

6. Every exposure matters

There’s been a lot of talk lately about “viral load.” The viral load, however, is only a small part of a person’s overall toxic load, or toxic body burden. There are natural and man-made toxins inside every human being (even newborns). Some chemicals are metabolized relatively quickly and others stick around for decades or even a lifetime. Some chemicals have been shown to directly affect the immune system, but every substance added to the body requires resources to manage and takes a person one step closer to the tipping point at which staying healthy is no longer possible.

It can be helpful to know what chemicals are likely to cause what symptoms or diseases, or to know whether you have a genetic weakness that might make you more susceptible to the effects of a certain class of compounds. It isn’t necessary to know that, though, in order to begin to protect yourself.

A guide to addressing indoor air pollution during lockdown and beyond suggests the following:

• Minimize use of air fresheners, pesticides, harsh cleaning products, aerosol sprays, and adhesives.

• Reduce indoor burning.

• Use an exhaust fan or open windows or doors.

To those, I would add the following suggestions:

• Keep things clean (using simple, non-toxic products) and reduce the number of surfaces that hold dust. It’s not a quick, easy fix, but removing carpet can make a big difference.

• Go fragrance free. A single fragrance can contain several hundred chemicals. (Also, fragrances in the products you use affect others around you as well.)

• Determine how toxic your personal care products are and make changes if necessary. The Skin Deep database is a good source of information.

• Reduce plastic use, especially in the kitchen.

• Eat organic food.

Much needs to be done on a societal level to help us stay healthy, but there’s also much that each of us can do personally. Now is a good time to do it.

A Game of "What If"

I’ve been writing this post in my head, wondering when the best time would be to share it. When will everyone staying home because of COVID-19 find the novelty wearing off?  When will most people really start to feel the challenge of seeing the same walls day after day, of feeling isolated and alone, of realizing the world is full of airborne threats to be dodged and managed?

This could be an important opportunity for the chemically ill community – maybe the closest we’ll ever get to being understood by the healthy population. It seems like a good time to play a game of “What If.” Here goes.

• What if you had to stay home to avoid the virus, not only for weeks or months, but for years, even decades, on end?

• What if people who were immune to the virus (or thought they were) put it in the air intentionally? What if they rubbed it on their bodies and infused their clothes with it and sprayed it in public buildings and in their homes and yards?

• What if people constantly told you or implied that you were exaggerating the problems the virus could cause or that your beliefs about it were a sign of mental illness? What if they told you over and over again that it wouldn’t affect you if you didn’t believe it would?  What if there was a powerful, well-funded virus lobby that worked hard to shape the opinions of medical professionals, employers, and the general public?

• What if the “We’re all in this together” mantra wasn’t true?  What if you were one of a minority of people who had to stay home? What if most people were out living their lives and were too busy to find ways to include you?

• What if you had been staying home alone for years, asking businesses, medical facilities, schools, churches and other organizations if they could either provide a virus-free space or online connection options, but they ignored you?  What if many people were suddenly forced to stay home for a while, and online opportunities instantly appeared? 

How would you feel? What would you hope others would do in the future? Replace the word “virus” with “chemicals” and you have the reality that those of us with chemical illness face. We try to find or create safe spaces and we shelter in them, working hard to keep them untainted as toxins are introduced from the actions and choices of others. When we leave our homes, we protect ourselves as best we can, but instead of being worried about potential future problems, we often experience symptoms, sometimes excruciating and life-threatening ones, immediately on being exposed. As with virus prevention, we’ve learned that the easy solutions (masks and air filters) aren’t enough and that we can only stay well if others take the problem seriously, too.

I want your life to improve, but I also want you to remember how you feel now. Human nature being what it is, though, I’m afraid you won’t. Recently I’ve been learning about the hot-cold empathy gap. The term describes the fact that when we’re in a “hot” state (being driven by visceral forces like anger, hunger, sexual desire, etc.) we have trouble remembering what it’s like not to be in that state and vice versa. It leads to a lack of empathy both for ourselves and for others. Right now you have a taste of the frustration, anxiety, and loneliness we experience, but once things calm down, the memories and empathy will fade.

Because of that, I’d like to ask you to act now to make some changes. There are two avenues of change needed. We need more safe spaces we can enter in person, and we need more online connection options.

What can you do now to make your home and other spaces more healthy and accessible?  Can you remove fragranced products? Can you switch to safer cleaners? Can you change the way you deal with bugs and weeds?

How can you increase online connection options?  Workplaces, schools, and churches have all discovered that the technology isn’t hard to master. You’ve proven you can do it. The trick is that what works when everyone is logging into a meeting from their own computer doesn’t work as well when most people are in one room and there are one or two trying to access the meeting from elsewhere. Sometimes only the person leading the meeting can be seen and heard by the online participants, which makes group discussion problematic. I would tell you what the best options are for combating the issue if I knew. I believe a multi-directional microphone is part of the answer. If someone with experience in what works would provide the information in the comments section, I would very much appreciate it. (If you comment on the blog itself rather than on Facebook or Twitter, more people will be able to see it.)

The book of Genesis tells us about Joseph, whose life fell apart to the point that he ended up in prison, through no fault of his own. Pharaoh’s cupbearer ended up there, too, and Joseph interpreted a dream for him and predicted that he would soon be released and back in Pharaoh’s good favor. Joseph had a request for his fellow inmate: “When all goes well with you, remember me and show me kindness; mention me to Pharaoh and get me out of this prison” (Genesis 40:14). Verse 23 tells us what happened when the cupbearer was released: “[He], however, did not remember Joseph; he forgot him.”

We in the chemical illness community are like Joseph. Suddenly the cells are full of people who will soon be released. We’re asking, pleading, begging, “Please, remember us when you’re free again and show us kindness. Help us get out of our prison.”

What if you acted now to make changes?  What if you didn’t forget us when your life opened up again?  What if?

Welcome to My Planet

It’s certainly been an interesting week or two.  So much of the time I feel like my life, both past and present, has been and is so different from the norm that I’m like an alien, living in an alternate universe.  Lately people have been visiting my planet, and I’m curious to see the effects of that.

The COVID-19 preparations and precautions have led to a bad news/potentially good news situation for those of us with chemical illness.  The bad news is that the masks and mask inserts that environmentally ill people often rely on to navigate the toxin-saturated world have been unavailable or are costing far more than normal.  This unfortunately comes at a time when there are exponentially more problematic disinfectants and hand sanitizers being used than usual.  People with chemical illness are reporting having no safe places left other than their own homes.  Many are needing family members to immediately shower and change clothes when they return from being anywhere at all. 

Maybe some good will come from all this, though.  These are some things I’d love to see:

1. I hope that people will get used to seeing others wearing masks.  Recently I’ve heard healthy people talk about wearing masks in public and feeling they look like oddballs or freaks.  I assume that means they think that’s what I look like when I wear one.  It would be nice if the look became a little more commonplace and acceptable.

2. I’d love for churches and other organizations to improve their webcast and video conference offerings.  I hope churches that don’t currently stream their services will decide to do it.  I hope churches that already do will make improvements (like making sure the volume is adequate and providing the words to the songs being sung).  If churches could figure out how to make Bible study and other small group gatherings accessible to those of us who can’t enter the church building, it would be a wonderful silver lining to the current challenging circumstances.

3. I’d be thrilled if the situation led to more understanding and compassion for people with chemical illness.  We were doing social distancing before it was cool and we’re very familiar with the feelings of loneliness and isolation.  The frustration and grief of not being able to attend events we would love to attend is a daily part of our lives. When those of you who are healthy return to full participation in society, I hope you’ll remember that some of us can’t do that without your help.  The virus threat will diminish, but the threat of synthetic fragrances, pesticides, and other chemicals will remain.

Masks and staying at home aren’t the only things I’ve had experience with. I lived in Peru during a time when there were empty store shelves and a cholera epidemic among other challenges (like terrorism, political uncertainty, and inflation of 10,000 percent).  I’m feeling less anxious about the current situation than a lot of people seem to be because it isn’t new to me.  What I learned during those years is that people are resilient.  We can find ways around challenges when we work together and help each other.  Mostly what I learned was that God’s peace expands to fill the space we give it.  When we stop to breathe, we realize that God is in us and around us and holding us tight.

It’s not just the COVID-19 situation that has made this an interesting week or two.  If you count both dates, there are nine days between the anniversary of my sister’s death on March 7th and the anniversary of my husband’s death on March 15th.  Those nine days tend to be some of the most emotionally challenging of the year for me.  This year, in the middle of my “just get through it” time, I finally crossed the finish line of my excruciatingly long book publishing process.  It’s done.  The book (Chemicals and Christians: Compassion and Caution) can be purchased on Amazon, Christianbook, or through Redemption Press.  I don’t know what to make of the timing, but I’m grateful to have finally reached this point.  Thank you for your prayers and support. Thank you for being interested enough in this topic to read my blog. Thank you for wanting to know what it’s like on my planet.