I’ve been thinking lately about the concept of awareness. This is a word that anyone with a chronic or serious illness ends up hearing or using a lot. There are days or weeks, charity events, websites, blogs, and forums dedicated to raising awareness of this illness or that. Often in these cases “awareness” includes money to be spent on research or treatment, but my thoughts about this term go beyond the financial. Three particular instances have given me a lot to mull over.
September 14-20 was “National Invisible Chronic Illness Awareness Week.” (How are people with chronic fatigue meant to read to the end of that title without falling asleep?) When I first heard of this, I thought how wonderful, a week dedicated to the problems faced by people with invisible illnesses, something one of my favorite forums, But You Don’t Look Sick, is also all about. I read some excellent — and secular — articles on the site pertaining exactly to my experiences, such as this one about parking in disabled spots when you’re not obviously a gimp. (I use a cane now, but I still find myself affecting a limp I don’t have when I leave or approach my space.)
But look more closely at the site and you will see a few mentions of Christian resources. It turns out the week was created by the founder of Rest Ministries, which identifies itself as “a Christian organization that serves the chronically ill through a variety of programs and resources.” Now don’t misunderstand: I have no problem with the existence or mission of Rest Ministries. I appreciate anyone, religious or otherwise, who feels moved to help those who need it. But being both Jewish and atheist, I feel doubly disenfranchised by this site. I couldn’t bring myself to participate in Invisible Illness Week, and possibly they lost other non-Christian or non-theist people who were similarly turned off. I don’t like that the Christian connection is not made clear, but rather insinuated in various points on the site, nor is there any balancing message of inclusion towards non-Christians. My several inquiries as to this situation received no response.
“It doesn’t really matter because they’re spreading good information,” I’ve been told. It’s true that they are, and to some extent I agree that it doesn’t matter. But awareness campaigns that do not explicitly include the wide range of people whose lives are touched by illness do a disservice to those they could be helping, including shooing away people like me who would otherwise be moved to help with the campaign.
More: Are we helping or harming?
