The slowest nice vacation

I am back to walking a little and we went ahead with our planned vacation. We tried to plan it so that even if I wasn’t doing too well it would still be enjoyable and relaxing. So for me that means as close to right on a beach with warm water as possible and we are in Honolulu. I have never been before! Also, we have not very often gone on a “real vacation” that is not just traveling to speak at a conference. Last one was Akumal which was like, 10 years ago. I was not sure what to expect from Waikiki Beach but wanted to be in Honolulu so that if I felt like I wanted to explore I could take the bus around town or even around the island.

We thought we would try 2 hotels right on the beach. It is expensive but nice. Read on if you want my absolutely snobby west coast bitch hotel reviews!

First hotel was Outrigger Waikiki and I have to say I am not impressed. Good: Room was nice enough and we were high up on the 12th floor. Lovely view of ocean, beach, sunrise, Diamond Head. So nice to be right on the beach and be able to go out there several times a day and then back to rest in hotel room or have food. Beach itself lovely. But!!! Bad: the hotel was kind of yuckily like being inside a mall and the way to the beach was extra gross going through a smoking area and a sort of loud air conditioning venting alleyway; then the closest I could get to the beach was by wending my way through a lot of pool chairs (nearly impossible) to some steps and then through a lot of hotel umbrella and chair rows to park myself on the sand.

The other way to the beach which they tried valiantly to explain and demonstrate when I asked for beach access was as follows: Find a manager (hahhaahha) Who then took me in a locked elevator to the parking garage where I went through the entire garage to a door which locks when you go through it so you can’t get back, then a locked mini lift which takes you UP slightly to a small walkway that goes about 20 feet (not the actual lower terrace of seating and patio but a path to nowhere) Needless to say I did not take this option to get onto and off the beach!

The Outrigger restaurant (Duke’s) was extremely loud and tacky and a bit horrible (not possible to get food that isn’t like bland mall food infused with mayonnaise or something ). Then all night till I think 11 or midnight very loud amplified music and cheering and etc. Partly from the restaurant live music and partly from street performers echoing down a sort of canyon.

The main drag along the hotel strip is tolerable during the morning but afternoon and evening are kind of horrible between the maskless crowds (I felt I had to mask even on the sidewalk in this context!), the upscale mall feeling, and the loud PA systems of street performers. Once you get to the beach and park section of the sidewalk it is nicer and prettier.

AND if I never hear another ukelele cover of Somewhere over the rainbow, it will be a fucking mercy.

OK that is enough bitching. I am luxuriating in paradise!!!!! Fuck me!!!! Just trying to be real here.

On the bright and amazing side, as I mentioned the room was nice enough and view lovely so I sat on the balcony a lot and laid on a little couch. And the beach is also great. It’s crowded but I don’t mind that, it just feels like I am less likely to be eaten by sharks, who have their choice of succulent small children with boogie boards in the water with me!

I have swum a couple of times a day, working my way up from bobbing around in waist high water to some real swimming! No real waves good enough to bodysurf on but having the water be not flat is fabulous enough!

NO REGRETS.

Our 2nd hotel is Moana Surfrider which is light years better than Outrigger. Bar and restaurant MUCH nicer. Food better. Beach access is good, easy, and pleasant. The outside terrace and bar is great, very beautiful, not claustrophobic and loud like Duke’s. I can be on the terrace or the restaurant without a mask as the tables are nicely distant from each other (also great for wheelchair navigation). There is live music at night, but not super loud, not horrible classic rock and shouting (just kind of croony and background), and not going very late so that meant I am able to enjoy both sitting on the balcony at night and also slept with the balcony door open to hear the waves.

There is room to sit and work outside both right next to the beach and water, and also in a sheltered porch (where I am right now, because it’s raining, tail end of the bomb cyclone!) The giant banyan tree is beautiful – full of birds, and they light it up at night. Best of all there are ramps all the way down the terrace around the giant tree, to the beach bar, which is quiet and uncrowded, and the pool, which is laid out in a nice way and has more room for a wheelchair user. There are also rocking chairs at the top of the terrace overlooking the tree, the bar, and the ocean.

I am going to sit out here a lot and write in the next few days when not swimming!

As for my explorations on the bus, so far so good. I tried one day to go (with Danny ) towards Diamond Head and Hanauma Bay but we were decanted from the bus onto an inauspicious road shoulder and the beach was not nice and then more scary road shoulder and then we ended up in a strip mall by a lagoon. And also the beach and the botanical garden we tried to aim at turned out to be shut for New Year’s Day. Then Danny pulled his back putting my chair into the Uber we took back to the hotel. Argh. New Year’s moral of the story is, there is no one nicer to be in a chain of very minor mishaps on an attempted adventure than my partner. (Not so sure about his experience of me though).

My other bus adventure was to downtown Honolulu and Chinatown. Bus stops and the front of the bus are equal to San Francisco, good and bad. Good: accessible public transit; drivers mostly nice; people mostly nice; lots of older people want to ask me questions about my snazzy powerchair as they are on their last legs, with wheels starting to look good. We passed through several neighborhoods and there seems to be abundant apartment housing that looks pretty cheap, unlike San Francisco. Passed Iolani Palace which is pretty but looked deserted. It is listed as a thing to do in downtown but powerchair users have to transfer to a push chair and have someone to push them, so no.

I was heading to “the arts district” and Chinatown thinking to visit some bookstores. Downtown also had some nice civic buildings but was utterly deserted and most businesses were shuttered. My target bookstores were out of business. The cafes I thought to visit from the map were also dead and gone. Everything smelled like pee. Even the gay bars seemed to only be open later on the weekends so I concluded that the pandemic hit downtown Honolulu very hard. Chinatown got sketchier and sketchier as I cruised past some grocery and butcher shops (the only viable busines aside from some kind of sketchy bars)

I enjoyed Maunakea Market where I got some nice dim sum and a beautful fresh fruit smoothie with boba. It is very small but has a tiny food court with filipino, korean food, dim sum, etc. Sat there with my boba chatting with some ex convicts with a lot of face tattoos (they called me sis and we discussed our tattoos; I called them brah figuring it was the correct response to sis, and exchanging names would be overly familiar or inquisitive) (I am not assuming the ex con status, they told me all about it.) They were telling me about a talk radio station called coast to coast which they encouraged me to call as they just let you talk as much as you want to! You also can learn a lot there about how satellites spy on us and control your mind maybe! (that was the 2nd guy; the first who had the nicer face and skull tattoos looked askance at him, tolerantly.) We were joined by another lady (who called me mama, not sis, which maybe is the right way for somewhat blowsy middle aged ladies, or in my case non binary read-as-lady, to address each other with respect) and after a bit I left with my half drunk smoothie and dim sum in a bag, wandered around some more, chatted with more of the friendly, loafing derelicts at bus stops who welcomed me into their circles; did not find anywhere open that had a bathroom, which maybe explains why downtown smelled so strongly of pee, and took the bus back to Waikiki, meekly returning to my tourist zoo life.

My goals for the remaining trip are:

Go back to Heyday bar/restaurant at the White Sands hotel, which was really fun, small, quiet, amazing, and had swings around a little bar in a palapa (or whatever a beachy thatched hut is called here if not palapa) I would like to sit on a swing and have another of their delicious cocktails.

Go to the Bishop Museum which I imagine may be a weird cross between Te Papa (elegant, honoring the local culture) and the Pitt Rivers (scary yet fascinating jumbled up miscellany of loot and appropriation with last minute unsuccessful attempt to ameliorate the situation) – we will see.

Swim twice a day even if it is the bobbing around “swim” rather than 20-30 min of actual swimming that I would love to work up to.

Write a lot. (Family history zine/book project, and Wheels zine which I intend to do every winter holiday for the past umpty million years and don’t)

Danny suggested the Dole plantation tour (again I imagine something a bit colonial and hideous maybe with a Pitt Riversian apology something like a glass case with a sign that says “sorry about your sovreignity” and maybe “P.S. Oh yeah also, sorry Honduras, yay pineapples?”

Stretch goal: I would like to check out Kailua to see staying there at a beach side b&b might be an option for another trip. It promises better bodysurfing and (maybe) kayaking would be possible, but beach access might be harder (like, I may have to park my wheelchair and hoof it across a very wide beach) This may not happen because my ankles are not really good enough for me to drive around the island. Though I could take a complex 2 hour bus ride. If I felt stronger I would totally do it.

powering through vs. space to heal

I am in a flare up of my mobility and pain issues (arthritis/joint pain) which means I cannot really do much, am using my manual wheelchair in the house, need to rest quite a lot and am not exactly on the top of my thinking game. Am on prednisone and many other drugs (like gabapentin which makes me feel like a zombie) to deal with it.

The real distinction this time to me is that I can look back over many years of this happening and see the patterns very well. My new normal baseline, in pain and mobility, is pretty decent and predictable and I’m stronger and healthier than I have been since 2005 or so.

So a flare up looks like going from 50 to 10mph rather 30 to 10 to 20 to 15 to 25 to 10 — more of a “suddenly flattened, but temporary” than a hideous wobble in a chaotic unpredictable journey. I feel less afraid that I will be down for a year, and fairly confident that in a couple of weeks I’ll be cautiously bouncing back to normal. Fingers crossed that is true!

It is easier to see what is happening and react appropriately when it isn’t just a hideous chaos of up and down in pain level.

I think the differences are mainly that I know how to manage better, I’ve been wiser in respecting my limits (not THAT much wiser but, better than I was) and limiting what I do — like not traveling a lot and having really consistent sleep. Another difference from 10 years ago is that if I’m in bad pain, I :::stop:::! I stop and rest and adjust my lifestyle and my expectations temporarily, rather than taking pain drugs and powering through ie making it worse.

Now, when I did “power through” it was because I felt I had to, or I wanted to – like going to Vienna to speak at a conference with both feet in soft casts, in a manual wheelchair, by myself, in the dead of winter in the freaking snow. I wanted to do things to be a good parent, or for my career, or because I worried it might be my last chance to travel if my health got worse. I did not want to lose my jobs or career and would end up using all my PTO/sick/vacation time when ill and then feeling under a cloud and then going off on leave when things got unbearable. (Now, I feel like I can take time out of work and come back and trust my job will be there.) So, I respect my past choices, but I’m glad I decided to change my priorities to center more on making space for rest and healing.

This is not at all to imply that anything is “all in my mind” or that the power of positive thinking can cure chronic illness. It took a pretty radical shift in some underlying ways of thinking for me to change my approach (with help from a fabulous, smart therapist) to try to handle my activities and condition in a more sustainable way.

liz in wheelchair with a cat, smiling

Disability Technology Foundation plans

I gave a short talk at the Aaron Swartz Day Hackathon about my new project, Disability Technology Foundation. Its goal is to open license assistive tech of all kinds; to archive and share plans on how to build your own helpful devices, from pen holders to powerchairs. We’ll be aiming to provide an easy pathway for inventors, especially disabled inventors, to freely share the tools they have created with the world. Then, others can try out these devices, share bug reports and troubleshooting or repair tips, and adapt and improve the original designs.

Here’s the talk description:

Disabled people are often locked into using proprietary hardware and software that’s ridiculously expensive, over-regulated, and difficult to maintain or modify.

E-bikes and scooters have great ecosystems for production and maintenance. Yet power wheelchairs, though they use many of the same components as e-bikes or scooters, are locked into a world where they’re unhackable, unfixable, and unrepairable by their owners.

Disabled people do hack their wheelchairs and other assistive technology, including software, hardware for mobility, screen readers, voice banking, AAC, and gadgets to help with limited dex. Meanwhile, engineering students, disability studies folks, and other academics, regularly invent useful stuff. The problem is, most of this stuff does not make it out into the world for practical use.

The time is right for disability justice to combine with F/LOSS! We can build an open ecosystem for assistive tech!

DTF, or Disability Technology Foundation, is Liz’s new venture. DTF will serve as a pathway for assistive technology inventors, hackers, wheelchair modders, etc. to open license their work. That way, they can share it with the world, so that other disabled people can have free access to DIY and low cost plans to build equipment — and make it work for them.

A translation from a while back

Every once in a while I think of this poem by Nicanor Parra, and want to find my translation again. So here it is! I think it is weirdly compelling and it also makes me laugh even if it is a somewhat bitter or wry laugh. There’s a lot in there.

Frases

No nos echemos tierra a los ojos
El automóvil es una silla de ruedas
El león está hecho de corderos
Los poetas no tienen biografía
La muerte es un hábito colectivo
Los niños nacen para ser felices
La realidad tiende a desaparecer
Fornicar es un acto diabólico
Dios es un buen amigo de los pobres.

– Nicanor Parra, 1962

Sentences

Let’s not throw dust in our own eyes
The car is a wheelchair
The lion is made out of lambs
Poets don’t have life stories
Death is a collective habit
Kids are born to be happy
Reality tends to disappear
Fucking is a diabolical act
God is a good friend to the poor.

Awesome Foundation Disability, 69th winner

The 69th winner of the Awesome Foundation Disability grant is Jessica Elaine Blinkhorn with the project SPANKBOX!

NICE!!

SPANKBOX is a photographic installation that depicts individuals with physical disabilities in hypersexualized poses and situations. SPANKBOX puts the power back in the hands of those with physical disabilities by granting the audience permission to look, fantasize, and question disability and sexuality in a safe environment. It also allows people to see themselves for who they really are by answering the questions presented by those whose images hang in the SPANKBOX gallery.

And the part I really love is, after the question period of the exhibit:

During the performance portion of the installation, audience members will have their words read back to them to assist the viewer with realizing their internalized prejudices and exclusionary practices.

Both celebratory and confrontational! I’m so curious how this will go! And I hope the travelling exhibition will make its way to San Francisco! They have a further fundraiser going to help with future touring.

Hard to believe it’s been five years of Awesome Foundation Disability. I have learned a lot from reading the grant proposals every month. I hope that these microgrants with a low barrier to entry help change the lives and give all these creators, inventors, teachers, artists, and others a real boost!

Day off

I always feel like I am taking too much sick time and people will be judging me but I looked at this year with my manager and I had taken 8 sick days and 6 vacation days. Something is wrong with how I am thinking!

I immediately took this Friday off to relax a little extra.

Some writing, maybe doing some garden work, going to Noisebridge, and I will get a massage. Wish me luck on getting someone who will pay attention to my need for gentle, basically geriatric, massage!

What if we just use our blogs as a replacement

Maybe I should just post six times a day like I used to, instead of twittering. Random thoughts and diary, intermixed with the longer, more thinky “important” posts. Mastodon still just breaks my head somehow (sorry). But I will make another stab: https://mastodon.social/@lizzard

Last night: Speakeasy night for EFF members at Zeitgeist. I have a pint of beer and get non-profit lawyer recs and gossip about children with Rebecca. Chovwe is staying with me and says he is fighting for his life (from the cold). We laid around on the couches talking about philosophy, good and evil, how fear motivates people to behave violently, and whether we are both too charming and witty for our own good; he quotes Mencius and I lose an hour looking at different translations of the Analects while he falls asleep snoring gently.

Today: I remembered to move the car for street sweeping. My knees hurt like fury. Nabumetone is not cutting it. Would I have tweeted all this? No, but I think it is preferable to the zombie like scrolling and retweeting, though it is lonelier feeling until we learn to comment on each other’s blogs again.

Disability Inclusion and Technology

This year I have been working with the Disability Inclusion Fund to develop a program for DIFxTech. This is a grant and fellowship program meant to support people and organizations who work at the intersection of disability justice and technology.

The request for proposals will be open until October 17th! Here’s some useful links:

* The Request for Proposals (RFP) and an FAQ (Frequently Asked Questions)

* In plain language translation, the same RFP and plain language FAQ.

* The application form in Salesforce or that same application form in JotForm. JotForm may be better for screen reader users.

I want to talk a little bit about why this project is dear to my heart. I’ve worked in tech for many years and I’m (most of the time) visibly disabled as a wheelchair user. I’m often the only physically disabled person in my workplace. I’ve also been involved with local hacker and makerspaces. Computers and the internet have helped me immensely as a disabled person. For example, both in preventing social isolation and in enabling me to work even when I’ve been stuck in bed or in my house. Yet I see so many ways that technology could be a tool for liberation, for movement building, organizing, and connection, and that in what we choose to build, and how we build it, how it is available to people, and what they understand they can us it *for*. I want Nothing About Us Without Us to also mean, the creation of new technologies and our visions of ourselves as disabled people in the creation of the future!

Onward, to the stuff about grants!

What does DIFxTech mean?

As I go around talking with people about the grants, they’re asking me questions like: What does “intersection of disability and tech” mean? Is it like making websites accessible?

Well, yes and no. It can be about taking existing tech and making it accessible for a wider range of people with disabilities. That hits the “disability” and the “tech” parts of DIF, but not the “inclusion!” So, crucially, think of how we design and create technology, and who makes the decisions about that, as well as how we integrate tech into disabled people’s lives. We are looking for work where disabled people are in leadership or equal partnership – that’s the Inclusion part of this equation!

What we are aiming for here is movement building, which is complex to convey. We want to put more disability justice and disability rights into “tech”! That can mean a lot of things. And, we want deeper integration of technology, tech tools, and engineering of all kinds, into communities and movements of disabled people!

Some examples for DIFxTech

To that end, in the RFP, we made a big list of examples of work we’d love to see. The list is grouped into three big categories:

1. We want projects that understand how technology can support disability rights and disability justice. Including,

For example, looking at how algorithmic bias may affect disabled people and what we can do to fix that; policy and legal work to support disability justice in tech; disability justice and technological organizations or companies learning from each other.

2. We want to support projects that make tech development more equal — to democratize tech development, provide collective and equitable access to digital infrastructure, and mobilize cross-disability solidarity in the tech sector.

Some examples: Make accessibile toolchains for disabled engineers, creating technical documentation that’s accessible in multiple formats including plain language translation, improve access to the tools and infrastructure that disabled communities need to bridge the digital divide.

3. Your project could also be about making sure people with underrepresented disabilities can do work with technology.

For example, reframing tech education as it is integrated into disability justice organizations; hosting workshops, hackathons, and conferences where marginalized disabled peoples’ experiences as technologists are amplified and elevated; education for a broad tech sector audience, on disability justice and anti-ableist approaches at the intersection of tech and disability.

Grantees will receive support for 3 years, giving them a longer than usual on-ramp to help their projects get a solid start. We will also aim to connect the grantees with each other, with the larger DIF cohort, and with other organizations and partner opportunities; generally, to give good support beyond the funding itself.

If you have any questions about applying for a DIFxTech grant, please reach out to us at difxtech@borealisphilanthropy.org.

a jumble of wheelchairs and wheelchair parts in a workshop