disability – Page 3

Hunkering down

March 14, 2020 Liz

As we go deeper into social distancing, I have some thoughts to share.

Danny and I both tend to read the whole internets (usually while we should be sleeping) and keep our finger on the pulse of things so it is interesting to compare notes with him about the rapidly changing situation and responses and theories and all that.

It’s been touching to see people “reaching out” to me as a possibly vulnerable person. Often folks who I have known online a while and who are worrying about me b/c I am disabled. Thanks friends. (I am fine and have a lot of social support and also sufficient money.) I also got a pneumovax shot yesterday to potentially decrease a bit of risk of getting extra lung infections on top of COVID-19. Danny started working from home (partly to protect me which I appreciated more than I realized I would once he said it).

I had some plans to go circulate letters to neighbors offering mutual aid but I find that I’m just a bit exhausted emotionally. I might do it next week. Instead, right now, I am donating cash to the Disability Culture Club (Venmo to @DJCultureClub) and am hosting a Stardew Valley group game for kids/teenagers/anyone stressed (with the Unlimited Players mod). Hosting a small online space and making it hospitable and building out a game Discord channel is something I can do, and all the kids are out of school for weeks if not months, so why not. Gaming is now my activism, lol?

Here’s more about the DJCC:

Are you a disabled person or elder in the [SF/Oakland] East Bay needing extra support during COVID19, maybe because you can’t risk exposure on public transit, your attendant called out, etc? Please share your needs with us at https://tinyurl.com/DJCCsupportform so we can try to assist. Please know we are prioritizing BIPOC, will be triaging needs, and can’t make promises (grocery stores are sold out of a lot and we are disabled volunteers of color doing mutual aid, not the Red Cross!)

If you are an ally wanting to offer support, the best way is to Venmo us at @DJCultureClub to pay for hand sanitizer, masks, gas, caregiver pay, protective gear, groceries, and to fund ongoing mutual aid projects like this. We also very much need local abled volunteers who are not in contact with those at risk to provide support. Please complete our ally form here: https://tinyurl.com/DJCCally

The job hunt continues, and all the places that interviewed me and then said “we’d love to hire you but we can’t accommodate remote work” then went the very next freaking week (or two) into their entire company going remote. I should go back to them and say they should reconsider since I’m an expert in doing tech work from home — as I’ve done it successfully for two decades.

A lot of disabled people are having that sort of feeling of half resentment, half hope (or some other proportion, maybe it’s more 90/10 or 99/1!) at society’s ability to suddenly bend and adapt and change its structures NOW, for everyone, when they wouldn’t a week ago, for us. Or, are expressing some level of eye rolling as people go stir crazy after 2 days staying at home. Hi, welcome to a lot of our realities (me and other people who have had long periods “home-bound”). Oh, it feels so sad that you can’t go to that event you had tickets for and were looking forward to for months? Yeah I know. (Also skimming over the obvious horribleness of people hoarding stuff that for some disabled/ill people are necessary daily survival supplies, like alcohol wipes, etc but let’s move on for now…)

I can’t stay in that feeling for long, and what you should try to do to move out of it and let go of the bitter or resentful feelings, is realize we have many coping skills to share. Just like you, an experienced disabled or chronically ill person, would do to mentor a newbie, (Like we do all the time!) here is where your experience comes into play, and your having gone deep into these feelings and emerged again, becomes somewhere that you shine. That can sound too much like “we exist to teach the abled a lesson” but that isn’t it — because they’re not going to necessarily stay in able-landia, the world is changing for at least the medium term, and millions of people recovering from severe pneumonia isn’t going to result in millions of able healthy not-chronically ill people. They will need us, for solidarity and to know how to live well and we will need their mass political support even if it is new and based on their own new needs. (I’m thinking free universal health care here.)

That said, hi, I’m actually a bit scared, knowing we’re all going to get this sooner or later, and having had a lot of respiratory illnesses, I’m scared of having a worse one, because it’s scary and hurts and you feel super anxious not breathing well, and it would be a heinous way to die and I don’t want to die. However, if I do, not to be morbid, at least I have the comfort that I have had a really great life.

Back on my bullshit!

June 24, 2019June 24, 2019 Liz

I’m back from my trip to Seattle, Vancouver, Whistler, and beyond! Now that I’ve taken the Coast Starlight train to all its destinations I can’t wait to take some more long distance train journeys!!

Danny has often pointed out to me how I go down a social class for every bag I’m carrying and it was even more true for this trip. As I went from my friend Els’s house near the giant geodesic dome thing in downtown Vancouver, to the train station, at 4:30am, laden with giant backpack hanging off the back of my wheelchair, smaller backpack at my feet, and duffel bag balanced on my lap, a little group of maybe 30-somethings was heading away from the crosswalk I was approaching. One of them veered off towards me holding out a bag. “Would you … would you like breakfast?”

Now…. what a question since I was just looking around wondering if anything was open so I could get a muffin or whatever before getting on a 3 hour bus to Seattle where I’d get back on the train. Perhaps this young man had been at some sort of … early meeting rife with donuts, or was a baker carrying home some fresh pastry and a MAGICAL CROISSANT was going to appear for me.

Thus I paused a bit, consideringly, and said “Um… what is it?”

“It’s my leftover McDonald’s pancakes. Please, take it, go on!” (Earnest eye contact, look of deep and pained concern.)

Maybe I should have taken it so he could feel good about himself but I did not and I may have giggled inappropriately without explaining but I did smile and was as nice as possible at 4:30 am on the street. Then I passed through a sort of encampment in the park and at the train station a cab driver was screaming at a definitely homeless dude who was asking for change and so I gave the homeless dude my leftover Canadian money mentally attributing it to the nice man with the free bag of (gross!) Mcdonalds pancakes.

Completing my downwards journey to squalor I then just flat out laid down and fell asleep on the (relatively clean) floor of the bus.

p.s. I did get breakfast from a nice man in the train station who opened a tiny cafe at 5am and sold me a slice of lemon cake!!!

p.p.s. Wait staff in Vancouver AND Whistler sensitively offered me a straw, multiple times! They lean over and say it with soulful discretion, while making eye contact and touching my arm a little! “Would you like a STRAW, ma’am?” (They have HEARD that disabled people have this whole straw thing so…….)

More about the amazing adventures on my trip later !!! A little at a time!!!

p.p.p.s. CRIPS!!

Notes on some Web4All talks

May 14, 2019 Liz

Back at Web4All, part of The Web Conference. Here’s some notes on talks I liked.

Dragan presented the talk “AudioFunctions.web: Multimodal Exploration of Mathematical Function Graphs” and I also got to see a demo on Monday afternoon. AudioFunctions works in desktop and mobile browsers to show visually impaired users the shape of a function through sound pitch and volume using a touch screen or mouse. As you move around on the graph with mouse or finger (or keyboard with arrow keys) the pitch rises and falls according to the position on the y axis, and the further away from the line you are the softer the tone. And you can double tap for the graph to read out the coordinates. It’s very elegant! I also had a nice time talking with Dragan and his friend Cole from CMU about Ingress, indoor and outdoor navigation apps and maps, Inform7, and other fun stuff.

I caught just a bit of a talk by Lora Aroyo on CrowdTruth, which is a system for annotating information while allowing for ambiguity and disagreement, and had a look at the tutorial. It made me think of the CYC project (which I nearly worked on 30 years ago… but rejected the job offer (with regrets)) – I wonder if they are putting data into CYC now through Mechanical Turk instead of by hiring poets.

A talk called “Addressing the Situational Impairments Encountered by Firefighters through the Design of Alerts”, very interesting to see the design and testing process explained. Though I was annoyed at how this was introduced as being more convincing to designers that they need to pay attention “because firefighters are so rugged and not permanently disabled.”

Another talk on designing and piloting web dev classes for blind/visually impaired screen reader users. Looks like a good project. (opinion…. As so often with these kinds of classes the level of knowledge your students start with is important and you have to spend 90% of the initial time providing background on computers, the internet, programming languages, tools, etc and either you acknowledge that and make it a hella long course, or you end up creating a sort of hothouse dev environment so that students can experience the gratification of publishing something that works)

An interesting trend in some of the talks – use fairly sophisticated analysis to figure out (on the fly) what users might want or are trying to do or what barriers they’re running into based on how they interact with a page. For example it doesn’t matter to the vast majority of users that a site or a browser is infinitely configurable because they are reluctant to change defaults for fear they will break something, so, it works better in most cases to analyze and guess — are they having trouble or going very slowly in clicking links in small elements of the UI? Detect that and serve them a redesigned page with larger UI elements to interact with. (IMHO just design it to be less persnickity in the first place…. but…..ok).

This is an issue near and dear to my heart, or maybe my butt or my feet depending on how you look at it, because my powerchair “guesses” what I might want to (or “should” ) do; when it thinks i am going down a steep slope, it slows to a crawl no matter what I tell it. So, sure, you can guess what i want but give me the capability to override and reprogram it!!! omg.

At lunch one day I talked with Alex Jaimes about the company he works at, DataMinr, and today I hung out with Nathanel who works on RDF data systems and his fiancee whose name I didn’t catch but who works in digital humanities. And also had a nice gossip with Amy Hurst who was at CMU and now teaches HCI at NYU and heads up the Ability Project.

One last note on Chet Cooper’s project for Ability Magazine, Ability Job Fair. Basically this is a super accessible online job fair. Employers pay to list their jobs and for job-seekers it’s free. The next job fair will be on July 25, 2019. I’m interested in this project because I get asked by other disabled people all the time, how to get a job “in tech” and I’d like somewhere to refer them! During the job fair, they have sign language interpreters on-call to assist with live meetings, real time talk to text for people who have difficulty hearing, a system set up to be compatible with JAWS and other screen reader applications, and support for using voice or SMS. Chet was explaining more stuff to me during a coffee break and I got the impression he has a hydra with a lot of heads. There is also Ability Jobs which has job listings (aside from the actual event of the job fair) and some other thing called Ability Corps which is a volunteer org that from the sound of it is trying not to be a sort of charity model of abled-contributor-to-disabled-client, but to actually include disabled people in some kind of mutual aid process and to be enthusiastic about disabled people doing volunteer work in a serious way.

Wandering a dream campus

May 7, 2019May 7, 2019 Liz

Vivid dream this morning of wandering around a university campus (imaginary) where I worked and went to school. There was a central building for “rehab students” (disabled ones) where you could go hang out. I felt at home there & everyone was nice.

In this dream I was hours early for a class or appointment, and decided to explore. The only reasonable route from the “rehab” building to the central part of campus was shaped like a giant children’s slide wide enough to drive my wheelchair down. There were also enormous grassy hills which I could almost get up to the top of if I serpentined – but then would sometimes slide backwards to the bottom again.

Many other bits of the campus had ramps or slopes which had odd inconveniences. One had an old fashioned metal children’s merry-go-round right at the top of a slope. It was annoying but didn’t stop anyone.

I rode a specially accessible bus around the perimeter of the campus, admiring places I’d never been and didn’t know existed. But the accessible bus was more like a giant station wagon with a bus-sized bed in the back where you could lie down; I had to take my wheelchair apart and unload all my bags and things and battery and shove it into various inconvenient spots and sit on half of it. When I got off it was a tense process of me yelling at the bus driver to please not leave while I was halfway through unloading the unwieldy pile of wheelchair parts and pouches of junk onto the sidewalk!

As I rode the bus I was trying to install an app someone recommended to me on the university’s chat server, with a utility called “bottle” because it was based on code from a bot. The interface required typing with very small virtual keyboard keys which I kept fat-fingering. Finally I got the commands typed correctly & the game installed.

The place where I got off the bus had an entire hillside that was high end shopping and a combination sports stadium and huge bleachers where choirs were performing (many at once, combining beautifully and echoing over the hillside.)

Meanwhile I was looking up fun things to do on campus and found a pool with an exercise class. When I got there – people weren’t sure if they should go in. It was an ocean salt water pool, more like a giant tank at an aquarium, full of seaweed and fish, the bottom was sand with rocks & coral, and you had to be naked to go in. Being me, I took off my clothes and got in, leading everyone else to feel they had permission to do so as well. We frolicked in the water until it was time for the fake tide to turn (they drained most of the water, then refill it slowly). The person running the “class” was a somewhat creepy old guy. I ignored his weird explanations of the naked exercises we should be doing and just played in the water.

Not a bad dream – full of those “somewhat inaccessible moments of frustration” that so often pop into my dreams though.

Major lessening of pain

April 29, 2019 Liz

Every day that I wake up and I’m not in crushing pain it’s so amazing. I run though a little inventory and my arms aren’t burning and aching, my feet and knees have the mildest ache, I can take a deep breath because my spine isn’t fucked up. I do a little tai chi or do some housework or go swim, and feel a *healthy glow*. Fucking bizarre, I love it. Instead of burning willpower like rocket fuel as I try to achieve escape velocity in order to get through daily life, I’m just… chilled out. There’s so much more room. I am trying to keep myself in check so I don’t fuck this up. Gradually building up strength is the goal here! Doing just a bit too much takes me down for a day or a few days or a week, not months…. if only this lasts.

I want to do ALL THE THINGS right now. My huge greed and ambition, restlessness, desires to do everything, to make stuff, to pull marathons (of making stuff obviously not literal marathons) all need to remain CHILL.

Cannot take this good spell for granted so I’m trying to just appreciate it for what it is without being too goal oriented. Slow & steady.

Two excellent essays

April 29, 2019April 29, 2019 Liz

From A Future Worth Thinking About (a blog with a great tagline – Thinking about magic, cyborgs, robots, and artificial intelligence–and why some of those words could use changing–since 1982), “Heavenly Bodies: Why It Matters That Cyborgs Have Always Been About Disability, Mental Health, and Marginalization.

And Making Kin with the Machines, which I enjoyed so much I started laying it out as a tiny zine (it would make such a nice small book for a pocket and it is creative commons licensed.) We’ll see if I actually do it or not… maybe… if i get the layout to my satisfaction.

Design student wheelchairs

April 26, 2019April 22, 2024 Liz

Good article from Jocelyn Maffin, Wheeled Mobility , critiquing how media celebrates highly impractical mobility devices invented by designers.

No regrets

April 15, 2019April 15, 2019 Liz

A post about pain and its relative absence. Warning: boring! The last month or so have been an amazing window into the world of Much Less Pain. I would describe my last…. well since 2012 or so… since the ankle blow out and recovery year. several years of having this daily rhythm:

Last few months, increasingly so since last year’s surgery,

As usual I am posting this because I was in the 2nd happy state for a good long while, maybe since January? But for the last week, I’m in a little more of a “flare up” state where I can’t go swim laps, I’m thinking hard about going up and down stairs to do laundry or go out for errands, Sitting up tires me out, my joints are burning, in the morning, just walking all the way across the (tiny) house seems like a lot. Ankles burning and stiff. Neck and arm on my bad side giving me trouble. Waking up in the night with pain. Work has to be my priority, then housework and doing very easy PT. Scaling back everything.

Sucks….

Perhaps I just overdid things because I felt so good. Or maybe it’s just chance. But, I’m bouncing back and determined to keep doing all my PT and strengthening exercises.

Goal, tomorrow go to the pool and don’t try to swim laps, just gently float around in the shallow end.

I feel super hopeful and not too upset about it – because I feel just *stronger* all around for all the exercise and activity.

The Hostility of the Helper

March 30, 2019March 30, 2019 Liz

When others perceive us (disabled people) as being in need of help there can be a strange dynamic in play. They deny our agency, our perspective, seeing us as an obligation. They are forced, in their minds, to hold the door open or tie down our wheelchairs or grab our arm unexpectedly and try to steer us up the steps, forced by their concept of what is proper and even moral. It’s the right thing to do. They’re prepared to do their duty. “No, thank you” isn’t a possible answer to their concept of dutiful helping. The dark side of their duty is anger. They’re already mad, before we respond in any way to defuse or exacerbate the situation. Pre-loaded with dehumanizing forces. The undercurrent of hostility can poison the respectful interdependence that is possible between any people. They will perform their duty, and we the helped will perform gratitude. For survival, sometimes we have to accept hostile, angry, disrespectful help. I wonder how others think about this and how they keep their equilibrium, a philosophical distance or perspective maybe, and either move on or are able to change the Helper’s minds. The compliance that makes us one of the good ones while we may be burning with fury. It is no different from what most of humanity has to go through and most of us will meet it as we age.

In contrast, how much I appreciate open-hearted kindness. Moments of being treated just regular, without fuss, being seen, heard, listened to, being a person. Those moments wherever we find them from friends, family, people in our communities, or strangers, are a healing antidote, for us to treasure & keep in our core, against the hatred of people whose cruelty we have to swallow. What helped last night? The kindness of a “just regular folks” bus driver acting decent. Chatting with someone about their baby on the elevator. Hip hop dancers on the train. Reading Mc’s bus poems. Art and culture and . . . I’d maybe call it manners . . . all indescribably precious.

Rescued by Love and Magic

March 24, 2019April 22, 2024 Liz

Well it finally happened — I ran out of wheelchair battery! I left the house with 21% and figured it would be fine. After getting groceries I was at 10%. A block from the top of Cortland (a huge hill that I live at the bottom of) the battery indicator suddenly dropped to 2% and then stopped me dead! I was laden with bags of groceries as I was shopping for my friend who is house-bound at the moment and doesn’t have anyone coming to help him till Tuesday. anyway, I sat there pushing the “on” button and going about 2 feet, then the battery would die again. I was probably cursing and distressed looking but I can’t even remember — I was so discombobulated.

A young couple walking by asked if I needed help. Incredibly flustered, I explained maybe i could coast from the top of the hill, or get in a cab. They said they lived just a few houses down and I could charge the battery, or they could push me!

We fiddle around to disengage the motor and I let the guy push me uphill for a block.

Y’all I was blushing. But it was so nice of them both.

At the crest of the hill the battery indicator suddenly said 4% and I was able to motor very slowly down the hill. “OMG thank you. What’s your name?” “I’m Magic.” I’ll say! “And your name?” “Um, I’m Love.”

I was literally rescued by Love and Magic today!!!!!!

Even my bad adventures have a good side sometimes! I’m a little teary eyed right now and going to lie down and experience some feelings while my powerchair battery charges up.