More Hugo Reading

Uncanny Magazine Issue 24: Disabled People Destroy Science Fiction September/October 2018 - Dominik Parisien, William Alexander, Rachel Swirsky, Jennifer Brozek, A. T. Greenblatt, A. Merc Rustad, Katharine Duckett, Nisi Shawl, Fran Wilde, Elsa Sjunneson-Henry

This was interesting and made me think and this is why I'm adding it here. 


ETA: This is a bit long.


It brought up some of the anxiety I have annually when work wants me to sign the Disability Survey, the question they ask is if you have a physical or mental condition that impacts your ability to enjoy life (paraphrased but essentially the gist of it).  And every year I have to admit that yes, I have things wrong with me that get in the way sometimes.


I'm probably Coeliac (and this is what I tell waiters); I started to get stomach problems that people (and doctors) dismissed if I ate more than one portion of gluten-containing foods per day and then even that became horrible (I won't go into details except it took two days to get over it).  After being sent to the A&E (ER for US readers) because I got terribly ill on a holiday with my folks, I had to admit that something was very wrong.  However I got into trouble with work about my sick leave, so, it appeared to be Gluten so I eliminated it. I didn't get an appointment with a gastroenterologist for a while so by the time I had the test I was healing.  She asked what I had done. I told her.  She said that I was probably Coeliac but she couldn't confirm it officially but to stay off the gluten.  I have (mostly) but sometimes it's work to find a restaurant to eat.  Nothing is spontaneous, I research places almost obsessively.  I can't just look at a restaurant and say "that looks good" no matter how tired, foot-sore or leg-weary I am.  And I still get "poisoned" semi-regularly; we won't discuss how I end up at events almost fighting over the meager gluten free offerings.  I get very upset at those who can eat gluten who eat "my" food because it "looks good".  Don't get me started on those asshats who have some places ask "medical or choice" when I say I'm Coeliac/Gluten Free.


I also have bad feet (another way you can start me on a rant is to suggest I walk more for my health, I have had 2 Physiotherapists suggest that walking is the last exercise they would suggest.) I have flat feet and overdeveloped calves, I tore a calf muscle (fun! Ultrasound afterwards, because Chemo!) walking a short distance down a street, in sensible sandals.  I also have a lower-back/hip injury (it's my lower back but it manifests as my hip, bodies are strange) that acts up, sometimes after walking for more than 20 minutes - I start to drag my foot.  And you know when you're sitting and you put your foot on your opposite knee to massage your foot/calves/stretch your hip? Yeah, I have to reach down and pull my foot onto my knee.  It doesn't like doing that.  Right now it's less sore than it was this morning, I did minor stretches to get it to less screaming. Let's not get into how my body does not like the yoga resting pose of Child's Pose.  My ass and heels do not meet, I can often get a yoga block into the space.  However I can do forward bends; warrior poses and stuff like that like a boss.


I have an injury to my writing hand shoulder.  Good news, it led me to embracing fountain pens, bad news I have serious issues these days with crochet.  Bone deep pain.  Right now it's sore.  I have no idea what I did to aggravate it. 


That's just the obvious messy stuff, there's the sinus headaches that I suffer from regularly enough that I end up with an almost annual sinus infection; the suspected adult onset hay fever; the post-chemotherapy lung damage from Bleomycin and the depressed immune system from the same chemotherapy.  

Yeah I'm almost 50 and I could probably do some things to improve some of these. I do regular Yoga, I try to do stuff but some days my spoons are gone.  Being awake enough to ensure I hydrate and eat can be the miracles.  I would like some health gurus to live in my body and tell me that fixing some of this stuff is easy.  Their bland platitudes are so annoying.  Yes I know that if I got more fit I could probably reduce some of the issues.


This isn't even going near the timebomb that is my liver (it constantly tests high, possibly as it took over too much of the work from my lymph system when I had Hodgkin's Lymphoma but it's also a bit hyperactive since) and the fact that I'm on blood pressure drugs.  And yes, my liver is possibly not happy with the cocktail that keeps me moving, however I am in my doctors office on a regular basis to get checked up. (This is one of my problems with the idea of getting your prescription remotely, yes you're probably fine but the people who see you regularly are the pharmacy staff and the GP, I love the pharmacy staff we see in ours, they know us well enough to ask if we're okay when we're not, and occasionally advise GP stat moments).


ETA 2: and we almost forgot the chronic Hidradenitis suppurativa that litters one of my armpits and my upper legs. (don't follow the link if you're squeamish, but yes my underarm looks a lot like that)


This doesn't even go near the stress that has had me shatter two teeth, even with a nightguard.


Also the next person to ask me why I didn't have kids?  Yeah.  They will get the laundry list of this, it takes most of my energy to deal with this body, I'm barely coping with it.  


And with this laundry list I still hesitate about marking myself as disabled.  To me that sometimes sounds like it's final, that I have to live with the concept that this is as good as it gets and that doesn't sit well, even if I'm not really currently doing enough to help myself.


Then I read this.  It's a mixed bag of fiction and think pieces and made me do a lot of thinking about life and what I have and that really when you think about it, we're all disabled in some way.  We need to think differently about disability, that it's a spectrum, not a black or white issue.  I remember listening to 99% invisible, IIRC, where it pointed out that ramps in shops and on paths helped people with prams more than people with wheelchairs an unintended benefit.  Making things accessible doesn't make other people's lives worse, it makes everyone's life better.


Restaurants still need to do a bit better with allergies and online menus and search tags.