Small activism for people with limited energy or resources

What can we do, as chronically ill people? We are often not people who can plan and lead marches. We generally cannot work long hours. Many of us have trouble with phone calls due to anxiety. Many of us are poor and cannot donate or purchase supplies.

Here’s what we can do.
Link sharing of important information, research and fact-checking.
Emotional labor, such as telling people we care for them, leaving supportive comments, linking to cute animal pictures and music.
Listening to people’s troubles. Using Skype and calling our friends. Sometimes you understand something so much better when you describe it to someone else; you can think through a problem when you talk to someone.
Sending packages or notes in the mail.
Producing fanfic, fanworks, art, etc. Journaling. Creating. Letting our voices be heard. Reminding the world that we exist.
Wearing buttons– making ourselves and our positions visible to the world.
Starting conversations. Being allies as best we can.
Sharing what resources and skills we have. For instance cooking, proof reading, pet sitting.
Taking care of ourselves and each other, because survival is essential. Reminding others to do self-care. Affix your own oxygen mask before assisting others.

More from Susan Sontag

from “Illness as Metaphor”, 1977, p. 85

“But how to be morally severe in the late twentieth century?  How, when there is so much to be severe about; when we have a sense of evil but no longer the religious or philosophical language to talk about evil.  Trying to comprehend ‘radical’ or ‘absolute’ evil, we search for adequate metaphors.”

See again, the use of “crazy” metaphors to describe evil people and evil acts.

Susan Sontag’s “Illness as Metaphor”

page 58

“Nothing is more punitive than to give a disease a meaning — that meaning being invariably a moralistic one. Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in significance. First, the subjects of deepest dread (corruption, decay, pollution, anomie, weakness) are identified with the disease. The disease itself becomes a metaphor. Then, in the name of the disease (that is, using it as a metaphor), that horror is imposed on other things. The disease becomes adjectival. Something is said to be disease-like, meaning that it is disgusting or ugly. In French, a moldering stone façade is still lépreuse [leprous].

This book was published in 1977.  The disease I see most often given metaphorical status these days is mental illness.

A miracle

My doctor today was a new one, a middle-aged Indian woman whom I liked immediately. She asked me quite a few questions about my facial pain. She said she doesn’t do trigeminal nerve injections– she does infraorbital ones, which was the ordered procedure from my PA (physician’s assistant at the headache clinic). She wasn’t sure if that is the kind of pain I have, wasn’t sure this nerve block would help, and asked if I wanted to go ahead anyway. I said yes.

[picture of the infraorbital nerve, which runs below the eye and to the side of the nose.]

My face relaxed and went numb as the lidocaine took effect. I had an immediate response where tears ran down my face in an immense feeling of relief.

Nerve pain has been my constant, wailing demon baby companion for someething like 13 years. The baby stopped wailing and went to sleep.

This means it’s likely not my trigeminal nerve after all: it’s the infraorbital nerve.

She said because the nerve is being injected, the pain may flare up for a day or two before the block starts to work.

I cannot overstate how amazing this appointment was.

Valuing chronically ill graduate students

Tenure, She Wrote


Many states issue “special wage certificates that allow employers to pay disabled workers according to productivity rather than hours worked.” Working under these rules, a disabled person can expect to make less than $4/hour. Some people think paying disabled people less is a good thing, as shown by this response when Maryland ended sub-minimum wages for disabled people:

If a worker is less productive, should they be paid less? This is not an abstract question for me.

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Not Looking Away: A follow up to Jim Hines’ article

Content note: this post discusses harassment in general terms.

Jim Hines published a nice piece on Monday at io9 on sexual harassment in the SF/F community:

Don’t Look Away: Fighting Sexual Harassment in the Scifi/Fantasy Community

I encourage you to read this article. It is an important overview of a serious issue in our community and in our wider culture.  I’ve been deeply involved with addressing harassment (both sexual and non-sexual) as a ConCom member and part of the Anti-Abuse Team for WisCon.  In this post, however, I speak only for myself, not for the AAT or for WisCon; this is my personal blog.

I very much agree with most of Mr. Hines’ points.  Harassment is not a new probem, it is a big deal, and we must not tolerate it.  Creating and enforcing anti-harassment policies are an important step in addressing harassment and abuse at conventions and in our wider communities.

As he says, it also helps when authors and guests of honor speak out against bullying behaviors, as Nalo Hopkinson did in her WisCon 40 GoH speech:

My WisCon 2016 Guest of Honor Speech

It’s easy to encourage others to join your dogpile, to create an atmosphere of fear, anguish and self-doubt in your preferred victims. Yet it’s not a bad thing to urge people to question their own beliefs and behaviours. Anger and conflict have their uses. But what are we doing on the other side of the ledger? I’m hearing from far too many people who would love to be part of science fiction, but who are terrified of the bullying. So what are we doing to foster joy and welcome to this community? What are we doing to cultivate its health and vibrancy? What are we doing to create an environment in which imperfect people (as all people are) who are trying to be good people can feel encouraged and supported to take the risk of a misstep, perhaps learn from it, and come back refocussed and re-energized, eager to try again?

These are two tactics, and there are likely many other moves that we can take, if we think creatively and make creating safer spaces a priority.

There is one point in Mr. Hines’ post that I don’t agree with.

A 1997 study by Herff Moore and Don Bradley on sexual harassment policies in manufacturing firms found that the existence of a written harassment policy resulted in a 76 percent reduction in one year’s reports. Simply announcing that harassment will be taken seriously can reduce incidents of harassment.

I haven’t been able to read the 1997 paper by Moore and Bradly because it is pay walled.  It is published in the journal Industrial Management if anyone wants to look it up.  Mostly I question the equation of reports and incidents– Just because an incident happens doesn’t mean it gets reported.  But since I don’t have the paper handy, I’m going to write about my personal experiences at cons.

In my work, I have found the opposite of Moore and Bradley’s finding to be true: when you create a strong anti-harassment policy and beging to enforce it, reports will rise.  The number of incidents may stay the same– there is no way to know for sure because we, the con runners, are not all-knowing– but the reports con-runners receive will go up.  Why?  Because people feel safer reporting.  They begin to trust that someone has their back, and that reporting might actually do some good: the complete opposite of the way our culture usually treats reports of harassment, which is with means of silence, denial, and suppression.  It can take a while to turn around the great societal machinery, to shift from suppression of any discussion of harassment, to opening talking about and dealing with it.

From my own personal experience: my eyes have been opened.  I am now able to recognize bullying and inappropriate behaviors.  What seemed before to be merely strange, intensely awkward or upsetting things that I had to deal with myself (or, more accurately, ignore and repress as best as possible), I suddenly recognized as things I could talk to the safety or anti-abuse departments about.  An example was a member making unreasonable demands of me as Access Coordinator and being extremely rude.  In the past I would have just complained about this person to my friends and told my friends to avoid this person–this is called the “Whisper Network.” These days I make a report about such things so that Safety and Anti-Abuse can intervene and deal with such behaviors.  Incidents don’t have to be major to be reported and taken seriously; and letting your members know this is another reason you might see an increase in the number of reports.  This took a lot of reading and learning for me, and a lot of work on the part of bloggers and activists writing about their experiences, creating terms like gaslighting, mansplaining, microaggressions, etc.  Keep writing and talking about it.  Keep creating a world where we are safer speaking and interacting with each other.