I’ve been in a bit of a blogging slump because of health issues, but I want to pass along some Paralympics coverage and commentary (partially because I just lectured to undergrad kinesiology majors about disability sport and physical activity, and partially because I did this for the London 2012 games when this was a baby blog)! I realize this is overdue as they’re over, but it’s something….
As a Gen Con attendee since 2012 (and other cons since 2008), these are things that are great to keep in mind n all sorts of large gatherings of people
Gen Con is nigh! With less than two weeks to go before the best four days in gaming (as of the time I’m posting this), I’m not going to rehash what so many others have put out there; there are tons of blogs and articles out there with advice regarding large conventions like Gen Con. My advice is going to be different. I am going to rehash what I’ve posted in previous years (they’re my most popular posts!). To most of it, Wheaton’s Law applies. For those of you who are link-averse, Wheaton’s Law is this: Don’t be a dick. However, the things about which I’m going to speak, are the sorts of things people are not aware they’re being dickish about. They’re not being malicious; they just don’t have any personal experience with these sorts of issues, so when they start breaking Wheaton’s Law, they don’t know they’re doing it…
I’ve been on an unanticipated hiatus from this blog because of a combination of health stuff (some of which started with leaving my pain clinic), part of my PhD program getting tossed topsy-turvy, and quitting my graduate assistantship. I’m trying to adjust to new health challenges that are likely due to aging with a rare birth defect (which may itself been caused by a genetic disorder, but that’s not solid yet), as well as trying to adjust to a life that has less schedule…that second part is a good thing because I’m actually able to cope with painsomnia a little better (because I’m not stressing about work and class the next day) and better able to deal with my narcolepsy (because if my body forces me asleep, I can address it and move along with my day). I’m also learning how to be productive without the almost daily structure of a work and class schedule.
Despite all that, I’m done with my coursework for my PhD and if I can get some cats herded, I will be back on track with my studies as long as my health doesn’t get worse. I’ve also managed to do a few writing projects, which has been exciting and I can’t wait for them to get published. Hopefully I’ll get more used to this freedom and I’ll be back to blogging more often…I might start by going through my draft posts to start the ball rolling. Also, the Rio Paralympics are coming up and I will at least be posting links to various bits of disability sport stuff!
What chronic pain does to your brain – All In The Mind – ABC Radio National (Australian Broadcasting Corporation) ‘At the moment we have focused our work to two areas in the brain,’ says Dr Sylvia Gustin from Neuroscience Research Australia. ‘One is called the thalamus—the other is the prefrontal cortex.’ Described as the ‘border […]
There are a lot of lists of this nature on the internet, but I want to do my own.
This is one of the main things that inspired me to want to make this post. Being chronically ill is expensive. Between the doctor appointments, regular medical tests, and prescription medications, plus the non-prescriptions medications. I’m not even talking here about the hidden costs like missing work because of being ill.
It’s not just how much it costs, but also the consistency of it. This comes up a lot for me in discussions with people about certain medical costs, and I realize that we look at things in a very fundamentally different way based on our health backgrounds. I find this with family a lot, who know about my chronic illnesses and medical expenses, and yet they still often seem to have trouble understanding that I know these costs will…
I was listening to a podcast interview with Julie Flygare, a person with narcolepsy who blogs at REM Runner, wrote a memoir called Wide Awake & Dreaming: A Memoir of Narcolepsy, and runs a nonprofit called Project Sleep. I think she’s pretty neat (and she’s really one of the biggest narcolepsy activists/advocates), but I was struck by something she said that raised my hackles…something that I hear often in spaces for sick and disabled folks. The gist is this:
I thought I was going crazy, but I found out that I have [xyz illness/disorder/syndrome/impairment]!
I hear a similar thing when talking with folks with physical disabilities like paralysis:
Just because I use a wheelchair doesn’t mean I’m dumb/mentally impaired/cognitively disabled/an idiot (insert other ableist terms…many times the R word)
Think about this for a second. I understand the intent behind the first paraphrase, especially as a woman. Many times women who try to address a health concern with a doctor are told that it’s “all in their head,” they’re “hysterical,” and the symptom(s) aren’t real. This happens a lot with fibromyalgia and chronic fatigue syndrome (also called myalgic encephalomyelitis). People want to be believed, especially by their doctors. It makes sense. We want our realities to be recognized and validated, especially when it feels like our bodies are attacking us out of the blue.
The problem, however, is that these words end up making mental health concerns to be “not real” and that is totally problematic. For instance, ask anyone who has panic attacks if what they’re going through is real. This notion of what is real and what isn’t is really sticky. A person who is having a panic attack is having a real reaction to a stimulus, whether internally (maybe life has been stressful & they thought about something that’s causing them great anxiety) or external (maybe it’s related to a phobia and it’s hard for someone else to recognize the trigger). For folks with more stigmatized psychiatric symptoms like hallucinations, delusions, mania, suicidal ideation, all this discourse does is create more stigma (and further hurt a person’s overall health as stigma is related to a slew of negative biomarkers like high blood pressure, high blood glucose, inflammatory markers, etc).
This “crazy talk” needs to stop in other places too (Fit is a Feminist Issue just did a blog post about athletic events or pursuits being called crazy, and there are a bunch of mental health advocates & psychiatric survivors trying to get people to stop calling things like the weather “schizophrenic” and “bipolar”). People’s lived experiences, diagnoses, and identities shouldn’t be used as metaphors for crappy things!
I’m not sure how I feel about the way spoon theory has been expanded to others sorts of disabilities- as I’ve seen the types of spoons used with. It does strike me in some sense as being a very different issue that distorts the language we use when people apply the same language of spoons to things that are actually quite different, but then at the same time, I kind of feel like if it helps explain disability maybe expanding the meaning helps….
I am torn though lol, because as soon as I type that I think “but sometimes it obfuscates the issue”.
But that issue aside… I really could relate so much to the author’s annoyance at a friend who found that sex is…