Author: Liz

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Pet peeve about local tourist advice

Posted on by Liz

When I am skimming through the various San Francisco related subreddits, there’s one kind of post guaranteed to get me commenting. It’s when someone asks for tips on where to bring their relatives who are elderly and frail and coming for a visit. The responses are almost uniformly ridiculous. Someone is wrong on the internet! I have to intervene!

The kind answers mean well but have no concept of what disability or frailty actually mean. Someone can even specify, my grandma is 95 and can only walk maybe 100 feet, and has a broken knee.

Inevitably there will be advice to take great-grandma on a day long trip around the entire Bay Area.

Sure, just drive 2 hours and then have a 1/4 mile walk at Henry Cowell park! Go the Palace of the Legion of Honor (not horrible advice, but just getting into the building even from the disabled parking spots (and there are only 2 spots) is way more than 100 feet. Blithe advice to rent a wheelchair or use the museum chairs!

I know people want their relative’s visit to be special and I totally respect that.

I guess there are a lot of assumptions to break down:

– An elderly and frail person who may be in some amount of pain, will enjoy a day long outing where they have to sit up in a car
– They even give a hoot about seeing the sights. They are probably there to see you. They have seen a bridge before! Maybe even they’ve seen a lot of oceans! Take them to tea and let them have a nap! Order take out! Jeez!!!
– They just flew here (difficult enough) to SF. Don’t then expect to drive them to Monterey or Pescadero or whatever. That is a lot of traveling time!
– An 85 year old with a limp and has a bunch of health problems is able to do the same things as a 25 year old who has their ankle in a cast for a month and zooms about with a knee scooter. No! Very unlikely!
– Taking the ferry. Always gets suggested since it sounds nice and sedentary and you see the sights. I adore the ferry, but it means a lot of walking and standing in line. It is not a short or trivial distance. I would not be able to do it at all without a power wheelchair. Kind of a bad idea depending on the location (ie, SF, no – bad idea. Richmond, actually, there is parking super close to the ferry terminal but it is still a hike from the car, then up and down those ramps onto the boat.)
– Wildly underestimating distances, because they are trivial to you and you don’t notice them
– Going somewhere loud, overwhelming, and crowded where you have to walk a lot and there is not anywhere to sit (for example, the ferry building – it’s great but be sure you know the walking capacity of your relative)
– Doing all of the above but also adding in some small children. Sure, do all that with some toddlers, sounds like a blast????? Think of the little kids as people with completely different access needs.

Now obviously there must be super energetic adventurous 90 year olds who are game to hop on the cable cars and hike around Muir Woods and so on. If you have one of those as your visiting relative you probably know it!


Fun outings for visitors with limited mobility

So what would I suggest in the cases where someone is visiting and has limited mobility, but no assistive device other than our friend, the automobile? I suggest the following, because these are things that I like to do, and can do, when I’m not walking well but also not using my wheelchair (usually because I don’t feel like loading a giant power chair in and out of the car trunk).

– Pick up or make nice picnic food. Drive somewhere close by, and scenic, where you can either sit in the car, or there is a park bench like 10 steps from the car. Then, and I cannot stress this enough, go home and chill out.

– Land’s End/Sutro baths overlook. You can get out of the car at the Sutro overlook parking lot and it is like, less than 10 steps to sit there on the wall or on a nice bench. Bring a thermos and some cups and have a little mini picnic. Take photos. Very scenic. Bring a bird identification guide (i like the small laminated ones with the most common birds) or a nice map.

– Drive through San Bruno mountain, end up in McLaren Park and have a picnic anywhere you spot a nice bench walkable from the car.

– Fort Funston if the idea of watching people hangglide is interesting to your visitor. The wooden overlook/boardwalk is actually a bit far of a walk for our 100-foot-limit person. Instead – you can either sit in the car right by where the hang gliders take off, or bring folding chairs and set up where you can see them. No need to really walk down there!

– Pacifica Pier Chit Chat cafe. It is tiny but kind of exciting if you like piers and fishing and all that.

– Pillar Point harbor, a little more of a drive but not too far. Barbara’s fish shack is my favorite, and has picnic tables and indoor seating but if there is a line just go to sam’s chowder house. Lovely harbor views, working fishing harbor.

– Consider cab directly to where you want to go if it is a restaurant and then don’t assume you are doing another thing. Do one thing! Then go home! Rest! Relax!

– If you are doing something where you plan to drop off your relative and pick them up think about whether there is anywhere for them to sit while they wait for you. Make sure there is and make the walking distance super minimal. Scout in advance if you don’t know. Also think about where the bathrooms are (like if you walk into a restaurant and it’s minimal distance, that still may be difficult, if they have to walk across the length of a giant building and down some stairs to get to the bathroom – and back!)

– Tea at Lovejoy’s is nice but I also think just going to your own neighborhood cafe or lunch spot if it’s close enough, is great.

– Wheelchairs you rent or borrow in a museum can be great, but make sure your relative is actually willing to sit in one! Will they have fun or will they feel helpless, self conscious, and have to confront all their fears and ableism? Is this the time for processing that?

Other ideas, for not going out:

Ask what shows they like and watch some of that with them.

Do some tech support for them on their phone or device. Like ask what they use it for and what are things that bug them. Fix that shit ! You can do it!

Look at photo albums and talk about the times they show and what you all were doing

Ask for help mending or fixing small stuff

Cook something together that they like to cook

Why does this bug me so much?

I think it bugs me so much because of the entire adult lifetime I have of people assuming I can do things, and them being optimistic, and my own ambitions and pride and enthusiasm on top, getting me into bad situations. “Oh yeah it’s really close” …. only to find that it absolutely isn’t.

As I get older as a wheelchair user and sometimes-short-distance-walker, I’m not even that old, but I certainly have a closer view, I now have more insight about how to slow down and enjoy things in a different way.

So, anyway, I jump into those threads, point out some of the too-ambitious things people have suggested, and mention some easier options.

Things that could be in my mailbox in order of horribleness

Posted on by Liz

Anxiety and hypervigilance are weird survival tools that help you get through situations where you don’t have much control. For example if you are a small child in the 1970s freaking out about every plane that goes overhead at night in case it might drop an atomic bomb, you can use your fantastic imagination to create scenarios where you don’t immediately die and are just far enough from the blast radius to survive, and your verbal and organizational skills help you become a useful, valued, neighborhood level leader despite your crippling allergies, nearsightedness, and being 9 years old.

My sister and I will probably never stop lightly making fun of our mom for telling us, when we were little, never to go to bed wearing our bathrobes, because the sash of the robe might somehow accidentally get around our necks and strangle us while we’re asleep. (She denies this but we remember it independently.) Despite laughing about it, I can’t really bring myself to go to bed wearing anything with a sash and I probably transmitted this hot nonsense to the next generation (even if jokingly).

This is just to explain my mental state as, too lazy to find the key to my mailbox lock, I stick my hand through the slot and fish around in its murky depths to try and grab the letters. EVERY TIME I imagine different disasters that could happen and they are like, ridiculous but often visceral. Scorpions! A rat! An exploding surprise!

So here we are. Things that COULD be inside my mailbox waiting to GET my hand, in order of horribleness (increasing):

– A large, hairy tarantula
– A rat (dead)
– Poop
– A murky ball of pure magical evil that taints my very soul
– A nest of angry fire ants
– More Shen Yun flyers
– A rat (alive)
– A scorpion
– A small, mailbox-shaped, vat of acid
– A bomb
– Someone else’s chopped off body part, like an ear or a foot
– The gom jabbar, and I am not the Kwisatz Haderach
– The gom jabbar, and I AM the Kwitsatz Haderach
– A ghastly hand that shakes hands with me

I’m sure there is more but those are all the things that immediately spring to mind. Remind me again how this can be explained away as a “survival skill”?

On the more serious side, i think it IS useful to have all the possible disasters occur to you, as long as you have the power to realistically assess their likelihood and prevent them (if likelly) or dismiss the thought (if ridiculous)!

Please do suggest your own horrible options and their position in the chart, in comments.

Historic bricks from San Francisco City Hall

Posted on by Liz

San Francisco’s original City Hall was built (on top of a cemetery!) starting in 1872 and finally opened in 1879, to be actually completed in 1899. (You can see some interesting photos and more history of the old City Hall on FoundSF.) Just a few years later, City Hall was destroyed in the 1906 Earthquake and Fire, collapsing in a huge pile of stone, iron, glass, wood, and brick.

ruins of SF city hall, 1906

My house was built in the late 1880s or early 1890s – though I have not pinned down the exact date, it was definitely here by 1892, built with a few other similar Italianate houses on land next to the original farmhouse on Mission Street. We’re doing some excavating under part of the house, and found some bricks marked with the letters C H in a fancy serif font:

brick marked with a C H

We looked this up hoping to find a magical database of historical brickmarker marks and YES. That exists! At least for California bricks.

Our C H brick was made in the 1870s for San Francisco’s original City Hall! It was probably in that pile of rubble in 1906 (cleaned up by 1909 according to some sources). These bricks were clearly part of a retaining wall which got covered over by some dirt, gravel, and a cobblestone patio (“Belgian brick”) at a later date.

Our bricks database lists them thusly:

Remillard Brick Company
San Rafael, Marin County, CA
1872-1878 for San Francisco City Hall

And there’s further cool info about the Remillard Brick Company from Oakland Localwiki and from Wikipedia!

We found other bricks, stamped CALIFORNIA and with round rivet-like raised dots in the corners, that were part of another layer of patio and wall that is now under the back of our house. The California Bricks database identifies them as California Brick Company and W. S. Dickey Clay Manufacturing Company, Niles and Decoto districts, Fremont and Union City, County, CA, 1913-1926.

Around that time, in 1920 or so, a future mayor of San Francisco, John F. Shelley, lived in our house with his parents and siblings. As a young man he drove a bakery delivery wagon, then went to law school, then became head of the bakery delivery wagon drivers’ union, then served in the California Senate and US House of Representatives, then became Mayor of SF.

Danny found us a quote about the C H bricks, which looks like it may be about SF City Hall. I will need to find the book to be sure of the context of the quote, but it’s from Bricks and Brickmaking: A Handbook for Historical Archaeology, by Karl Gurcke:

The initials ‘C. H.,’ impressed in the brick of which our new City Hall is built, put there to denote that they were intended for that edifice, may (should they prove to possess the lasting properties claimed for them) become to the antiquar[ians] of the remote future a source of much worriment as they labor to decipher their probable meaning.

Here we are, the antiquarians of the remote future!

Really it’s hard to express how much I love our 150 year old, C H bricks! I’ll figure out how to work them into our garden somehow after the construction project is done! For now, our back yard is turning into a sort of brick museum.

The slowest nice vacation

Posted on by Liz

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

Posted on by Liz

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

Posted on by Liz

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

Posted on by Liz

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

Posted on by Liz

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

Posted on by Liz

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!