Armor a mile thick today

This story starts out boring but bear with me, it gets funny and there is a punchline. So, there’s construction in my neighborhood on Misson as they dig up the street and repair some sections of sidewalk. Over by the Big Lots there were a bunch of barriers and hastily constructed ramps to the street and back around some of the work. I went out around the giant orange barrier things and found an SUV blocking the ramp up. I could go back out into Mission or go even further out into Mission. Both not good choices.

Sidewalk construction barriers

I ducked half under the SUV’s bumper and got onto the ramp while holding onto the corner of of the car so I wouldn’t tip over. As I got onto the sidewalk clumsily an older lady with a little kid came up and I asked if it were her car. (Yes). I said, Well hey. You are blocking the ramp! There’s construction so it was hard to get up. She started yelling at me. I can’t remember what! But it was mean. “You should go on the other side of the street then!” At one point she said that I should read the sign — if I could even read! Because the date wasn’t for today and she was parked at a meter! Arrrrrgh. Thanks for the implication I can’t read!

I finally yelled back, “All you had to do is say, sorry for blocking the ramp, BUT NO, you had to be a huge screaming bitch!” And zoomed off filled with fury and sadness.

SUV blocking the ramp

Hahahah! So much for my composure and wisdom from yesterday! Some days no bullshit happens and some days it does. Some times I can handle shit and sometimes I fly off the handle. I got over it and laughed at the whole thing before I had gone another block.

So, I got to the notary office and hauled myself painfully over the non accessible threshold. The notary guy was helping someone else and kept giving me sort of dirty looks like I should not be there. The dude he was helping had to go get some extra documents from his car a few blocks away. As he left, the notary told me to wait till he finished with the first guy. I said something neutral like, it’s good to finish with one thing before you move onwards. All fine so far but I could feel that he didn’t want me there.

Half an hour later he filled out my form and got my thumbprint and everything. Another dude came up and …. unbelievable… he told me to wait until he helped Dude 2. I thought about calling him out on it. Calmly asking him, did you notice that you asked me to wait for you to finish with that first guy? But then, did not ask the next person after me to wait for you to finish with me? Why was that? I looked at him and thought about how his tension would then turn to outright anger. It wouldn’t matter how I asked him to discuss it, he would be hostile and would escalate, 99.9% certain.

Decided it wasn’t even worth it. People sometimes assholes, life not always fair, minor inconveniences happen, we all have annoying things. I just hope he did the form right, unlike notary #1 a week ago.

I headed home. (Negotiating the crumbling, soft, rutted ramp with no problem now that there wasn’t a car blocking it.) At the corner of my street, a tall white guy with very close shaved grey hair started yelling at me. “You almost hit me on that thing, it’s dangerous! You’re not even sick! If you are sick, you’re a waste of space! The problem with you people….” (That again!!!!!) “The problem with you people is you just don’t think.” I said that I was sorry I nearly hit him. And was glad I didn’t run into him. (Sincerely.) (Though he was rude and mean.)

He continued yelling. I then said (we were going the same direction, him next to me) Ah, you maybe didn’t hear me, I just apologized for not seeing you and nearly hitting you. I’m glad I didn’t run into you.

(More screaming)

“OK. Well. I hope your day gets better….”

“I hope your LIFE gets better!”

“My life is pretty great actually.”

He responded, “Well the problem with YOU is, you get all the pussy, and I don’t get any of it!”

I am sure I cracked up laughing at that point but I only remember staring at him incredulously.

“You know, you are right! That is completely true, man!” I couldn’t tell at this point if he was joking! What the fuck? But I’m laughing, maybe he’s joking?

“You steal everything. You stole all the pussy and that’s UNFORGIVEABLE. The rainbow is for everyone. YOU STOLE THE RAINBOW!”

“Oh, wow. You are 100% right. The rainbow IS for everybody! I mean, rainbows! They’re great.” Now I’m just resigned that he’s not at all joking, and I’ve incorrectly started fucking with him and he’s going to punch me in front of my own house. And yet my mouth runs off. And his saying that I stole the pussy and the rainbow also weirdly made me crack up while it was also super sad.

“Yes it is. The rainbow means something. It’s from God. It’s got a purpose to exist. And you don’t. You shouldn’t exist.”

It is funny that you can’t tell if people are going to hate you more if they think you’re not “really” disabled, or if you are! Sometimes, a stranger’s gaydar, lavender hair, and maybe wearing your kid’s My Little Pony Rainbow Dash t-shirt trumps disability completely! Jeez, first they came for our curb cuts but they couldn’t stop there, they had to steal the pussy from the men and the rainbows from God!!!!

Somewhat spooked and really, I thought I could defuse his anger with a little conversation, right up until the point of no return. Now he knows where I live!

Deep breaths, carry on, blogging it because I feel the impulse to share — though now it’s like I’m horrible for making fun of this poor messed up dude. I’m so tired! How can all those things happen in just going 3 blocks from my house and back?

Rainbow power!!!!!!!!!

Rainbow butterfly unicorn kitten

Accessibility at the beach in Tulum and Akumal

I just got back from a fabulous vacation in Quintana Roo. We stayed in Tulum, in a small, funky, beachfront hotel zone, and then in Akumal. There is a lot to say about the trip but first of all, here are my notes on access, since that’s what I was looking for when I was planning the trip. This will be a Very Long Post!

My hopes were for warm water, beach access to calm water for easy snorkeling, small hotel right on the beach, and some scope for scooting around that wasn’t just in a single hotel. Both hotels I contacted in Tulum and Akumal were happy to explain the accessibility. Neither hotel was completely wheelchair accessible; what I wanted was just reasonable possibility that I could walk a few steps and be on the beach, and also that I should be able to leave the hotel on my own with a wheelchair or scooter. Akumal was my main goal, because I read online on some forums that a wheelchair user lives and works there and that the town has some curb cuts and ramps to accommodate them. That sounded promising!

For the flight to Cancun and back to San Francisco, United flight attendants let me put my TravelScoot (disassembled, not in a bag) in overhead bins. My partner and son took care of that. Without help, I would most likely have had to check the scooter at the gate. It was so nice to know that my scooter was going to be OK, not break or freeze in the cargo hold or be lost and was under my control. What a huge relief!!

(I do not know how anyone uses the TravelScoot duffel bag. I tried it… once… in my garage. It was like trying to stuff a floppy-jointed tyrannosaurus skeleton into a sausage casing. Not gonna happen, ever!)

Cancun airport was nicely accessible. It was extremely easy to get cabs. I had booked a shuttle ride beforehand with DiscoveryMundo. They were just outside the terminal building exit with a sign for me in a crowd of other drivers. It was a giant van we could have fit 10 people into, and probably twice as expensive as it had to be. I will just get a regular taxi when I go back. I appreciated having things arranged, though, and our driver Julian was extremely nice.

Our small Tulum hotel, Piedra Escondida, had about 10 feet of deep sand in the walkway up to the main entrance and lobby. Danny had to carry it and I walked with my cane. Once I was in the lobby, access to the indoor restaurant was flat but there was a step to get outside or to the registration area. We had to get across another 100 feet or so of sand to get to our little beach cottage, which had a tile paved porch and another small step to get into the room. I was able to bring my scooter inside and charge it with no problem. Our cottage (#6) was nicely positioned for me to get across short, maybe 10 foot stretch of deep sand to a grassy area I could more or less scoot over to the street out a back gate. It was rough but I could do it on my own (just barely).

porch with hammock and beach

This hotel would be reasonable for someone who, like me, can walk a little bit. And only for the most daring of manual chair or TravelScoot users or someone who does not mind getting help across the pockets of deep sand. The porch was nice enough, with a hammock, two adirondack chairs and a view of the beach and ocean and coconut trees, that I would not have minded staying on the porch quite a lot, which is what I did! The lobby was nice to hang out in, shady and relaxing. There was wireless, at least from the restaurant and lobby, and we could also get wireless pretty well from the porch but not the room. The bathroom was not wheelchair accessible and there was a shower with no bath. A nice shower though! The running water is all salt water. You get bottled water from the hotel or the mini mart to drink and brush your teeth with.

The restaurant for the hotel was good, a bit expensive, but very nice food, lovely people, right on the beach and outside, with wind screens up.

There was a constant warm breeze, more intense at night, which seems normal for this part of the coast for April. I am always cold where I live in San Francisco, despite wooly socks and long underwear. It was nice to hang out all day long in nothing but a bathing suit and sun dress or skirt.

liz in sundress at beach

My forays into the street were fun but of fairly limited scope. There was a short stretch of hotels, restaurants, small shops with textiles and beach towels and souvenirs, and a very nice minimart. I bought a rainbow flowered iipil (the kind of pretty white embroidered thing that in Texas, if dress length, was colloquially called “a Mexican dress”) and some flip flops in the kiosk next to the minimart. There were ATMs and a couple of kiosks where you could book tours or get advice, maps, and so on. They were both helpful. There was a very short and not very well ramped stretch of sidewalk in front of two restaurants but other than that I was scooting in the street along with a lot of bicycles and some cars and trucks. It was easy to get a taxi any time of day or night. South of our tiny strip of businesses and beach and tall trees, there was a rocky sea wall or pile of riprap along the little road, no trees, hot and dusty. I did not go past this sunny stretch of road to the main beach of Tulum’s hotel zone where I think there are a LOT more small boutiquey hotels including some gay nude ones and a lot of people who do yoga and more restaurants. None of the hotels in the “north” bit of the hotel zone, where I was, had good access to the street for a wheelchair user, but again, they all seemed vaguely doable for someone who can either walk a tiny bit or who can power through some gravel in a manual chair.

I walked onto the beach I think three times. It was a little bit steep for this to be easy for me. In short it was difficult. The water was rough. I am a skilled swimmer still (if not strong any more) and very good in ocean waves from a lifetime of enjoying bodysurfing and boogie boarding. But the deal breaker for me was uneven footing and shifting sand underfoot and also, rocks. I had short dips into the water but could not swim around as I would have liked. It was still relaxing and awesome to be there. There were iguanas! I also spent a lot of time watching the magnificent frigatebirds and brown pelicans glide overhead. Danny practices his ukelele a lot, and we all read constantly on our Kindles.

Tulum Pueblo itself looked interesting. It was maybe a half hour (or a bit more) walk away from our hotel, with a very nice sidewalk and bus stops along the way. I did not get to explore the town. Many people in the Hotel Zone (or, as I thought of it, the Gringo Zoo) rented bikes to get to the town and its reportedly great restaurants. It was just too hot for me to want to go that far and a bit too much bother to get a taxi to town with the scooter. And so easy to eat at our hotel and the Mateo’s Gringolandia Grill or whatever it was, across the street (which was very nice, relaxing, had good food and live music; possible to get into without a step if you went through the gravel parking lot; with one step if you went from the tiny stretch of sidewalk).

We had two day trips out in taxis. One day we went to the Tulum archeological site, aka the ruins of Tulum. I read up on Tulum’s history, online and in several books, and was excited to go there because it was one of the places I had read about and seen in engravings a long time ago from my dad’s books by John L. Stephens with the engravings by Catherwood. (Alternate universe Liz, I think, would have hopped on the translating Mayan glyphs train at University of Texas in the 80s, when they were starting to make major progress. I had that dream!)

engraving of tulum ruins from 1844

I read Friar Diego de Landa’s “Yucatan: Before and After the Conquest” in the Dover edition with an interestingly socialist introduction from the 1930s. I have read the Michael Coe Maya book several times in the past but did not re-read. (I will do that now, though.) Other books — Tulum: Everything You Need To Know Before You Go To the Ruins, which I would say delivers well on its promise. It has some of the history of the area ancient & recent, including explanations of the recent development of the area. I really liked this book a lot, enough to want a paper copy of it. Another excellent book: Maya for Travelers and Students: A Guide to Language and Culture in Yucatan. I went through it and wrote out all the Mayan words and phrases, eventually making a set of flash cards as I hung out in the hammock gazing at the ocean. I may continue learning Mayan. More on the history of Tulum, and on language, later in another post. This is supposed to be about access!

So, the Tulum ruins. After a 10 minute ride we got dropped off by a taxi driver at a quiet entrance on the coastal road side of the ruins. From there we went down maybe a quarter mile or less of flat, not too gravelly, path. The entry ticket booth is accessible and so were the truly palatial bathrooms at the entrance. Past the ticket line you can get a coke in the gift shop provided that you can walk up a step, or can fly. There was a cool diorama just past the entry, then some hard limestone paths, a little gravel but not a problem, to the world’s scariest steepest ramps ever. I appreciated that there were ramps, as otherwise it would have been a lot of stairs. The TravelScoot took the steep, corrugated slope like a champion. As it only has one motor in the hub of the left wheel (one wheel drive) it helped, going up, to lean heavily to the left. If you cannot do this, or are in a manual chair without someone to push and you are not a Paralympic athlete, you will be toast. Toast!

Once up the scary-ass ramps there were some signs and then a flight of many steep stairs to the Cenote Tower. I did not try that. Instead I went through the Northwest Gate in Tulum’s walls. Much of the paths in the central area were pretty flat and lightly graveled with a hard limestone surface underneath. I think my butt is still bruised from this foray into Bumpy Road land. I went up to the beach view of the main “castle” building and the Temple of the Descending God but it was steep and gravely and lumpy and sandy. At some point I stubbornly plowed into deep sand, and Danny had to carry my scooter out while I hobbled (a scene we were to repeat several times over our week long trip as I am often imprudent). The beach was closed off since turtles nest there. There was no way I could go up the hill to the Castillo. Oh well! Plenty of other ruins to sweatily look at and Ingress portals to hack. Danny scouted the exit at the Southwest door, or gate, which had stairs. Beyond it were some more sand and stairs and a bridge and more stairs to the real exit. We opted to go back the way we came. I zoomed down the scary corrugated steep ramps past wide eyed other tourists poking each other and gasping out things about the lady with the “moto”.

So: Tulum ruins. Doable, barely, for a wheelchair user if you have a powerful motor, big tires, or are very strong, or have someone to push you who is quite strong and heatstroke-proof. There is not a lot of shade in the central ruins. There is a lot of cool stuff to see in the bits where the path isn’t hilly or sandy. It helps to have a guidebook or just look stuff up on your phone if you have a good data plan (which is what I did, as well as playing Ingress like a total fool). Without the background you might just be like, OK there are some big ruined buildings here, pretty cool. With some of the history I think it is much better. Tulum was a sort of trade port and was founded in a sort of Warring States period around 1200 AD. The walls were because of that situation persisting over hundreds of years, with nobility living within the walls and most people living all over the surrounding area.

From the exit there was a little (free) motorized open bus shaped like a train, not accessible. As usual, we climbed onto it and Danny and Milo carried my scooter up. No one objected. The train decanted us into a giant parking lot area with booths of crafts, textiles, onyx chess sets, coconuts, a Starbucks, and little restaurant-cafes. It also had a very tall, maybe 70 foot, metal pole with guys on it doing something ritual and very acrobatic and amazing to the sound of drums and flutes. They turned out to be Los Voladores de Papantla. I donated some money to the guy who explained it to me. My Spanish is rusty but was really not too bad, the whole trip, and I could communicate complicated things well — just a bit ungrammatically. Anyway, respect to the Voladores and their ritual. If you read through some info on them you will see some of their history and controversies like whether women are allowed to become Voladores (yes in some areas, no in others). I bought a black sundress with cut lace inserts to wear on the beach, a mayan calendar tshirt for Milo, bow and arrows set with stone tips for my stepdaughter and nephew, a small, gorgeously woven bag and a beach sarong thing with turtles on it, and god knows, I cannot remember what else, but I bought a hundred dollars worth of it. This artesanal courtyard / flea market/ parking lot was hot and there were some vendors with hustle all around; I cruised around saying hello but remaining non committal until I had looked at everything. As usual there were some sidewalks but also lots of areas with light gravel, bumpiness, or a step (like to get into the starbucks). I found it very pleasant sitting in a little cafe where the trains stop (no step!) drinking from a coconut and eating fish tacos with Milo and Danny. We hung out there feeling like insiders as we watched several cycles of the trains pull up at which all the cafe guys would pop out with coconuts to entice the thirsty tourists from the ruins. I picked that cafe because it was playing Celia Cruz oldies. The food was great and not expensive. I asked to eat the inside of the coconut expecting they would just break it open and I would scoop out the inside. Instead they brought me the insides already cut up in a giant martini glass with a lime and hot sauce. So delicious!!

We went the next day to Xel-Ha. Despite reading about it online I could not picture what it would be like. It is a giant eco-theme park which reminded me in size and scope and some of the trappings, of the San Diego Wildlife Park. It is huge! But not as constantly scripted feeling as, say, Sea World. I got a discounted entry for being disabled. Entry is expensive, about 90 bucks per person. But that is including food and drink and the snorkeling equipment rental. This whole park was nicely accessible in many ways and very well organized. Entrances to things were level. There were accessible lockers and bathrooms everywhere. The lady at the ticket booth gave me a really really nice access map of the park, with paths of level access, slightly difficult access (i.e. bumpy path) and really not gonna be accessible paths, marked in green, yellow, and red. So nice! It was like a dream map!

It took Milo and I a bit of time to figure out how things worked. We left Danny (not a swimmer) in one of the many palapa-shaded restaurants where he hung out (he later got a massage at the aromatherapy spa). There are various locker rooms in the park which are color coded. We picked the purple station. You check in with your wristband, pick up swim fins, a mask, and snorkel, and get a locker key with a color coded lanyard. We left most everything in the locker but I had a beach bag for towels and stuff. They also give you towels and I think a bag, if you ask. But I had them already. Lifejackets are at the water’s edge. The park stretches around a huge, shallow, calm lagoon, and all the way around, there are many places where you can get into the water, usually by a couple of steps with handrail. I did not check to see if and where the level water entrances were.

We got in the water in several places over the day. I preferred the areas nearer to the ocean, where the water was salty and clear. We saw a zillion fish including a barracuda (omg). I did not have to swim any distance at all to see fish and most of the time didn’t wear the fins (which kind of hurt my ankles) With a lifejacket I could float around and just watch fish go by. In the freshwater end of the lagoon the water was more murky, there were more fish, but also more floating weeds and you couldn’t always see the bottom, which I find irrationally scary. (Much of the time as we got in or out there were people having panic attacks on the steps, to be honest.) No one bothers you about anything, you are free to roam around, snorkel, get out, swim, whatever.

There are special photo spots set up throughout the park where you can push a button and your photos get taken automatically and I think uploaded to a usb drive which you take with you. I didn’t look at the details of how it worked. It seemed well thought out.

There were dolphin, manatee, and sting ray encounter areas which you had to pay extra for. If I went back, I would do the dolphin swim. There were a lot of buffet restaurants, stands where you could just grab a cup and quickly fill it up with soda, shops everywhere, bars, and shady seating areas, a “hammock jungle”, a giant playground (not accessible – it was over sand) with short slides into the lagoon and one of those wood and rope kiddie-habitrail systems up in the trees. There is a long path and also a shuttle bus to the head of the river mouth where you can float down into the lagoon in giant tubes.

Fun but very exhausting. The park is HUGE. We only saw maybe a quarter of its paths and things.

The next two days I laid on the porch in Tulum eating cookies from the Mini-Super Pipienza, writing out Mayan flash cards, looking at birds and the ocean and trees from my binoculars, and taking pain meds.

Onward to Akumal. Akumal was like 1000 times more awesome than Tulum for me. Our beach cottage was extremely nice, bigger than our actual house in San Francisco, had a kitchen, 2 bedrooms, a huge patio, a paved walkway that got me 3 steps from the beach and to another hard limestone walkway (the Akumal Trail). The cove is full of boats, people, the beach is also the public town beach, so is very lively. There were more birds. We had a little semi-private corner of the beach with lounge chairs, and interesting rocks to look at. The point had cannons from a Spanish shipwreck from the 1600s. It was very nice to wake up at 6am, make my own coffee and some toast, and scooter myself the 50 feet to the tiny beach. From the paved bath to the cottage, there was a single step…. there was a step inside the cottage as well. To get onto the beach there were 3 steps with handrails. The beach is nearly flat, and not wide, so from the steps (and the dry sand area – the tide doesn’t vary much) it was only maybe 20 feet to get into the water.

beach with pale blue water

From the path I could go on my scooter to the Centro Ecológico, many small shops and restaurants, dive shops for equipment rental, a whole other hotel (I didn’t go that far but it was clearly possible) and then out the little road, or on a public access path, to the Akumal beach archway (the “arco”). Outside the archway was my favorite haunt, the Super Chomak Minimart where the other wheelchair using lady in town supposedly worked, though I never did see her and I felt a little too shy to ask after her. You can buy staple groceries there like fruit, potatoes, bread, pastries, cookies, juice, butter, milk, and any sort of thing you would want for the beach including clothes. Sorry to go on about the corner store but I do love a corner store. The women who work there feed the stray cats (which are numerous and a bit mangy) and they are very nice.

Accessibility was not perfect, ramps steep or bumpy, paths a bit rocky. But navigable in a manual chair. I could have done the whole thing in my Quickie Ti (if I had a bit more stamina).

The path to the point, less than a city block away from our casita, had parts with deep sand. Danny carried my scooter across them and I hobbled. Then we went on a very bumpy rocky path around the point where there are tide pools. Tantalizing. I don’t have the stamina and should not have tried to go down this difficult, exhausting path just to see what was there! I am somewhat covered in bruises from the whole trip, I have to say.

The Lol-Ha restaurant was super nice. Part of it is a Thai restaurant and part is local cuisine. The access to the outdoor bit was very nearly flat but there was a tiny …. maybe inch and a half high …. bump into the restaurant. The indoor part had a steep ramp, too steep for me to get up on my own, I think. The food there was great. I also had very good fish at La Cueva del Pescador and nice but somewhat blander fare at the Turtle Bay Cafe, both wheel-able through some mildly gravelly paths. There were mariachis in the evening roaming about, including a group with an arpa who played joropos, which made me super happy.

The important thing was, I could get around the entire area without stalling out on gravel or sand!

With the scooter, also if I were more into sitting up and scooting around, I could have gotten across the highway into Akumal Pueblo itself, which is tiny but I think would be nice to have a look at. People recommended restaurants there but mentioned it is not particularly scenic.

Milo and I rented snorkeling equipment for 2 days. The water was calm, sand perfectly shallow and gently sloped, water clear. I really liked that we could just go in the water to snorkel any time with no fuss at all. We saw so many turtles! Fish! Sea urchins! Mostly green turtles, and one Hawksbill turtle.

This bit of Akumal beach has many tour groups coming through as well as being the public town beach (free to residents). So, people start arriving on buses around 10am and go into the water with guides in groups of 8 people. There is some limit on how many snorkeling groups they let into the water at once and I think a daily limit on the number total per day. It was a lot of people but it seemed well handled and there is an orientation video in the Centro Ecológico that explains the rules about not touching any coral and staying well back from the turtles.

I played with some local kids one day (mostly by giving them all the floaty rafts from the hotel) and had slightly wistful thoughts about how much I would like to really play, but it being better on all levels to stay back and just enjoy their lively energy and happiness. It was frustrating also not to get to snorkel as much as I would have liked, which would be ALL DAY. When I was a kid I would stay in the ocean for hours until my lips turned blue and my grandma would make me get out. I have nice memories of lying down in the warm sand and I still like to do that, just getting covered in sand and getting my face right up to it. I do not like to stop doing things when they’re fun and exciting, obviously. At Akumal I never felt cold at all (amazing) but even taking a ton of pain medication (for me, a ton, not really a lot on the big scale of things) I exhausted and hurt myself swimming around and trying to walk more than I should. With a longer stay I could swim short amounts several times a day and rest more with less excited (self imposed) pressure to scout around and “see everything”. So my plan is to try to go back there for a few weeks at a time, maybe this summer, work from there, and swim a lot. There was decently fast internet which seemed quite reliable. It would be ideal rehab for my ankles and general strength, if I managed the pacing correctly.

I noticed in driving through Playa del Carmen (a lively, large town south of Cancun) that a lot of the sidewalks had curb cuts. It would be fun to go there and cruise around.

One last problem I had was that snorkeling has the temptation, if not the requirement, to look ahead of you and my neck and upper back do not like to do that. I am too stiff to do it well. I got along ok by swimming a modified sidestroke, mostly floating in the life vest, or by going on my back, then flipping over to look straight down. My upper back and neck are still in bad pain from trying to do this.

No one gave me any hassle for the scooter or for having purple hair. Better than at home in San Francisco. Obviously people were eyeing me askance everywhere I went, but politeness or shyness prevailed. When I got to chatting at length with people I would explain: arthritis, pain, can walk a little. No one found that weird, prayed over me, acted like I was somehow too young to be disabled or wasn’t disabled enough or performing it correctly, or told me about the fish oil homeopathy their grandma’s friend does, or stuff like that, as I encounter almost daily…. People also were universally quick to explain the details of access or tell me good places to go that were relatively level. The dynamics of that very pleasant courtesy and thoughfulness may be also due to my being a rich tourist in a not very rich area that depends on tourism. I could not help but notice it though. Thank you nice people in Akumal and Tulum.

In general the whole trip was physically challenging for me (how not — I can barely do the laundry or get out of my house to get groceries in my own town!) and yet it all seems very possible now. I would feel confident going back on my own. My goal was to find a place where I can have a real vacation, not traveling by going to tech conferences or things for work, ie traveling while not only doing my regular job but also conference talks and attendance! I think that kind of travel is at least something I shouldn’t try to do for the next year or so. Or maybe ever or very rarely. Maybe that time has passed. I like traveling and I love conferences and the intensity of meeting tons of people quickly and also I love public speaking. But it has not gone well for me the last few years as my mobility is worse and pain levels through the roof. So, Real Vacation. What a concept!

Feel free to ask me questions about access in comments and I can try to answer! I hope this helps someone out when they are wondering what might be marginally accessible on the Quintana Roo coast.

Like a warm pool

My new stomping grounds are at a physical rehab swimming pool in San Francisco. It’s called Herbst Pool and it’s at the Pomeroy Recreation and Rehabilitation Center. I used to go to the Betty Wright pool in Palo Alto (that then became C.A.R. and then Abilities United). This seems quite similar. The Center was started in 1952 as a rec center for people with disabilities. It seems to have a lot of day programs, gardens, playgrounds, a gym and art classrooms, and this awesome pool where the water is kept over 90 degrees. This is the important part to me. Cold is painful on my joints and I get stiff quickly. But it also is directly painful on my “bad” leg. Regular room temperature air on my leg feels like burning ice which is why I’m a huge fan of long underwear or at least secret leg warmers (under my jeans). So, warm water RULES.

Pomeroy herbstpool

Like the Betty Wright pool, Herbst Pool or Pomeroy Pool (whatever you want to call it) has a very wide sloping ramp to enter the water, and a variety of PVC wheelchairs useful for going down the ramp. There are also very shallow and broad steps with handrails. It is easy entry into the water. They have all sorts of adaptive equipment for the water. I don’t need that stuff but I appreciate the easy entry and not having to use one of those slow, free-show lift chairs into the water. The pool is a beautiful and relaxing space as there is a skylight, and one wall is entirely windows looking out at the trees bordering Lake Merced. The walls are covered with cheerful murals of cartoon whales.

The locker room and especially the main pool room are kept pretty warm. There are many heat lamps in the pool area. Really fantastic if you can’t tolerate the cold. Of course I always wish it were warmer and had a heated floor… and a sauna…. but it’s the best I’ve ever come across.

Once I am in things are pretty good at the moment. I can walk around slowly in collarbone-deep water, and do squats and other excercises hanging onto a kickboard. When I am not in a flare up, or, in some mythical past before my ankles went awry, I am a strong and good swimmer with good endurance and a long history of loving the surf. I feel super happy in the water, light and gravity-free (as long as it is warm). I’m going every week for physical therapy in a small group that’s run through Potrero Physical Therapy (note: they are awesome.) And I am trying to fit in at least one other pool visit per week, hoping to get to 3 hours total a week.

It is hard for me to get to Pomeroy. When I was gearing up to do this I didn’t find directions on their site for how to get there by bus, and it was really unclear on Google Maps from their address (on Skyline) where the entrance was on a rather large and confusing block of land between three streets. This matters to me because it can be non-trivial for me to get from point A to point B even in my scooter (because of pain, or nasty weather) and if I do’t know exactly where entrances are and what a building or “campus” is like, I’m not going to take my manual wheelchair for sure as it can easily be too difficult for me to go it alone. So here are the details of how to get there for anyone else who is thinking of rehab at this pool.

And, while taking the hour+ long journey from my house to the pool and during the somewhat boring hour of walking back and forth I often think how I should write up a post about the pool. Here it finally is.

Getting to the pool

There is parking and drop off that is level with the pool entrance, which is on Herbst Road and up a little hill. There are at least 5 blue parking spaces and some extra. Other parking is along Herbst and you will meet that “hill” along with a possibly significant walk. From the drop off point in the closest parking lot (where paratransit will drop you) It is a pretty short walk in to the pool. I haven’t measured it or tried it yet. It is too much walk for me to do with out a chair.

There are 2 buses that go nearby, the 23 and the 18. The 18 stops on Herbst Road just outside the Rec Center campus. To get to the pool you will have to cross a non-busy street and then go up a steep slope (a full story, not something I want to do in a manual chair but might in a pinch). There is a ramp for this but again it is at least one full building story high. At the top there is a little garden with benches, and a small (not accessible) playground and grassy area for toddlers. I like eating lunch there. (I think on the other side of the campus there may be an accessible playground.)

Pomeroy courtyard

To take the 23 (the bus I ride to get there) you have to get off at Sloat and Skyline just north east of the zoo. This street crossing is a complete nightmare. It is a 6 or 8 way stop, with cars coming very fast. There are 3 medians you will need to stop on to cross another section of the road. At least it has medians! This is a crossing I would not recommend to anyone blind. Instead get off the 23 at the zoo entrance stop and cross there where there is a light and only 1 median and traffic isn’t coming from 6 unpredictable directions. This will add another 15 minutes to your journey. The Hellish Intersection scares the crap out of me every time. But I still use it because I need to get back home so I can work. The 23rd itself is a pleasant bus, not crowded, bus drivers nice and not super stressed; they are the old style buses with an unfolding ramp instead of a lift. It comes about every 20-30 minutes depending on the time and day. Note, the bus stop going inbound is not marked well and is on one of the medians in the center of the Hellish Intersection.

Hellish intersection sloat skyline

It is half a mile from the Sloat and Skyline bus stop to the entrance to the pool, which takes me about 10 minutes to traverse. One minor problem I have is that the sidewalk along Herbst is often littered with eucalyptus nuts and branches, so I opt for going in the street. Not a big problem as the street isn’t too busy and it’s wide enough to have room.

cost of the pool; who goes there
The pool membership costs $50 a year and you have to have a doctor fill out the application. Then, the swim sessions or exercise classes are something like $8-10 each. There is not really a “drop in” mentality but instead you are expected to sign up for a 10-pack card at the least.

This high cost, and the difficult access, may explain why I have never seen any other wheelchair users at the pool. It is weird to feel like a damn unicorn at a place specifically meant for disabled people. The physical therapy class are mostly people with injuries or recovering from surgery who have PT for a short time covered by their insurance or Medicare and the arthritis exercise class seem to be retired people trying to keep fit. The other main users of the facility seem to be disabled people who have personal care attendants, or who have developmental disabilities and are there as a sort of day camp experience doing garden work, art classes, and basketball. Lots of wheelchair users around the grounds and buildings but none at the pool at the times that I go there. I can see the community that they serve. And I am an outlier in that community and yet this place is also *exactly* what I need (integrated into my life all the time). I do wish that the pool had some sort of option for low(er) cost access, not for me, but for people in the community who are living on disability benefits who would never be able to afford this and yet who are not “in the system” enough to get bused from a group home on paratransit (as I think many of the people hanging out at the Center are).

The other swimmers I have seen are all infant and toddlers with parents bringing them for swim lessons (with no relation to anyone being disabled). It is just a nice warm pool where they have baby swim lessons, like at Petit Baleen. It is lovely and cheerful to see all the kids coming out of the pool. They always seem happy and calm and sort of stimulated. And they make me happy as I think of the nice memories of when Milo and Ada were small.

Probably the kids’ swim lessons are basically a way for middle class non disabled people to financially support the rest of the facility. (Which also takes donations.) And, I think it may also get funding from places like Target that look for a place from which to hire disabled people for low pay and some sort of tax break; whatever happens there, I hope people are paid fairly.

Extra note on Janet Pomeroy who the Center is named after. Thank you wheelchair sports camp lady!

The facilities of the pool
The building itself has automatic doors. There is a station where you can check in and pay for your session. Also two vending machines with drinks and snacks.

The women’s locker room has a big heavy door quite difficult to open. They need a push button for the doors. Inside, there is a (wet) floored room lined with benches. There are a few hooks to hang coats or bags but no lockers at all and no curtained areas for changing. It is just one big room to change in. Probably that is to fit a maximum number of people (and wheelchairs?) into the room. The outcome of this is that many people lock themselves into the three bathroom stalls so I make sure to use the bathroom outside the locker room by the gym. Aside from this minor annoyance I do feel critical of the situation as the upshot is old ladies who have had hip replacements changing into bathing suits in a slippery tiled floor bathroom stall seems like a recipe for badness. (Add in an incoming and outgoing class of non-disabled toddlers to imagine this completely.) I think they are dealing with this by building a new (unisex) changing area for wheelchair users or people with attendants, in the main area of the pool. (The Abilities United pool also has this.) One last bitch about the locker room, it has no tampon machine. Come on folks. It’s a pool bathroom. What more important place are you going to be where you will need emergency tampons?! But I digress.

There are nice showers in the locker room, one with a curtain but all the rest open. The water is hot. Yay. The locker room has a heavy difficult door to get into the pool area.

From there it is cake; there is another shower for rinsing off near the pool and there are some open cubbyholes to put your stuff in if you don’t want to leave it in the (non-lockered) locker room. I notice that getting into the pool many people have both flip flops and walking canes. Some thought to this common situation would be good and it coudl be solved with another set of cubbies and some sort of cane holder that would take twenty-eleven canes. There is always a pile of flip flops and canes right at the point where the handrail begins! Plus, my scooter unless I am confident about the walk from the shower area to the pool and back.

Herbstpool window

emotions and memories of physical therapy
I can’t imagine how many of the ladies in PT with me manage the trip there or even the walk from the parking lot. It is always hard to remember how that works until I get back into that territory of ablilty. Driving + hobbling. I was there for years.

I remember so many times of “rehabbing” in pools over the last 20 years. At Valley Medical Center in the 90s it was depressing and squalid and yet the warm water was so freeing. I could move freely and learned some good exercises. It was hard to talk with the other people there who were all older women while I was in my 20s with a mohawk and two septum rings. These days at least I am middle aged looking and not unacceptable as a possible conversation partner to ladies who have hip replacements.

It was always an ordeal to get to a hospital and navigate it and also inherently depressing. I have swum at YMCAs, JCCs, many city pools, and so on which I far prefer to going to hospital therapy pools. The public pools are way too cold for me to tolerate. I worked up from 15 minutes to 45 minutes in a “normal” temperature pool where athletic people swim laps, but it’s never a good experience. The SF JCC has the second warmest pool in town, plus a hot tub and a sauna, by the way, but it is extremely pricey as well as being ultra clean, pretty, and posh. The CPMC hospital has a warm pool, and you can get PT from it, so that is an option, but last I checked it was not only out of service but you couldn’t “drop in” extra at all; you have to get on a waiting list for a weekly arthritis class and if you miss two classes they boot you to the end of the waiting list. That will not work well for me. So I am very glad that places like the Pomeroy Pool and Abilities United exist.

I thought over my times at the Betty Wright Center which had really good cameraderie and where I got a lot stronger. I remember starting out at Betty Wright crying uncontrollably and feeling that I could not take it but grimly slogging through. That always happens both physically and emotionally. In fact at Pomeroy I know we all cry in there sometimes. Even if not from pain, it is because it is easy to go about our lives somewhat disconnected from our bodies. Being in the water and having nothing else to do but gently move around, it can be an emotional experience. I am thinking directly about what I can and can’t do, and comparing it with other times in the water, often ones where I was hitting rock bottom physically. I notice consistently my problem is not, “not trying hard enough” it is pushing myself way too hard and re-injuring myself or making everything worse. This is the new era of caution for me. Some of this holding back is possible because of working with a behavioral therapist who is very knowledgeable about pain, disability, and chronic illness. Thanks Dr. C.

(There is also the aspect that doing this 3.5 hour journey means I have to put on a lot of psychic armor to deal with strangers, bus drivers, buses with broken lifts, the Hellish Intersection, people cursing at me for being in the way, people staring, people (nicely or otherwise) inquiring about my scooter or wheelchair, people angry with me for not accepting their “help” properly, and all the other things that make leaving the house an Epic Journey. I armor up and am prepared for it all but it is not without emotional effort and cost. It is never simple. For me to get anywhere, I have gone through this process already and have likely had many challenges to basic equanimity.)

Last fall I could not go into the water without soft ankle braces. It hurt too much to have the tiny currents of the water, wiggling my ankles around unpredictably. Right now I can do a lot of squats and toe-raises and walk back and forth for the whole hour. It’s great. I am not swimming yet as my knees and ankles (and i think back) aren’t strengthened enough. I cannot do things I used to be able to do in pool rehab, like write the alphabet with my foot in cursive. Nope nope nope nope nope nope! But, I have improved my gait (again) to be more even and to weight shift instead of limping or shuffling.

My goal right now is to get my ankles strong enough that I can drive to the pool, park there, and use my manual chair. That would be less physically grueling for me than the 2 hours of bus ride and scootering. It usually takes 3 and a half hours out of my day to get there by bus. By driving, I could be gone from work 2 hours instead. That means I could swim more often. My real goal though is simply to maintain this level of water-walking and aerobic exercise for health, flexibility, and strength without injuring myself. This is already the longest stretch of time I have consistently made it to PT or exercise without messing myself up, and also doing daily PT at home. Huzzah!

A last note, huge props to Pomeroy staff for letting me use a conference room in their office one day last fall as I wanted to be at a crucial team meeting but didn’t want to skip my PT appointment. They let me walk in out of the blue and use their office and their wifi and close the door for privacy. Super nice of them. I was able to give one of their staff all the details about TravelScoots and other lightweight scooters in return. I still feel I owe them some free computer advice or help! But, I thanked them for supporting a person “in the community” (me) in their job and also for helping make Firefox better (ha!) by getting me to my meeting on time!

Taxis who refuse wheelchairs

I enjoy coming to Portland and taking the awesomely accessible train from PDX airport to downtown, but I got in a little late for my conference dinner, so, figuring it would save time, I headed to the taxi dispatch line to get a cab. I was traveling by myself, with my manual Quickie Ti wheelchair and a backpack.

The taxis were about halfway up to the first taxi position, and the dispatcher motioned for me to get into the first one in line, a Union Cab. The driver shook his head at her, then at me as I asked him to open the trunk of the taxi. “I just need you to open the trunk, the wheelchair folds up and I will put it in.” He refused to take me as a passenger. The dispatcher was angry with him, but he ignored her and pulled up a few more feet, taking another passenger who arrived at the stand after me.

The second driver in line was in a Green Cab. He had a big white bushy beard and was wearing sunglasses and a large black floppy hat. He looked right into my eyes, shook his head, and waved his hand dismissively as I asked him to open the trunk of the taxi. The dispatcher also was unable to persuade him to open his doors or trunk. That guy pulled up and let someone else and their luggage into his cab.

The third driver was outraged at what he had just seen. He got out of the taxi, and helped me put my backpack into his trunk. I took apart my chair, which has quick release wheels like some bicycles, and folded down the seat back for us both to put the pieces into the trunk of the taxi. This driver asked the dispatcher from the airport taxi stand to report the first two drivers. I said that I would write down their information and report them. I got the cab companies and numbers, but not the license plates. As we pulled out of the airport, we actually caught up with the two cabs that had refused to take me as a passenger, so I was able to double check their cab numbers.

The nice driver was from Broadway Cab. He pointed out the phone number for the City of Portland complaint line, and was very supportive and helpful. He said that to his knowledge, the first two drivers have done this in the past because they think that wheelchairs will take too much time to deal with. Talking with him was so heartening, a good reminder that there are plain old decent human beings around who will treat me like a fellow person although we are strangers.

From my conversations with other cab drivers and bus drivers, there are other assumptions that they tend to make about wheelchair users or people who have a visible disability. Drivers may be angry at me before I even get into a cab or bus, because they are afraid I will take up their time, be unable to get in or out of the cab, may somehow injure myself and sue them, or whatever. If I try to hail a cab on the street, it usually doesn’t work. I have to ask someone else, even a total stranger, to hail the cab while I hide out of sight. This is part of why services like Uber and Lyft work well for me, while I’m lucky enough to be able to afford to use them. I can leave my house with my manual wheelchair, travel, and be confident that I won’t get stranded by bigotry.

As it was, I only had wait a few minutes for a nicer cab driver, and things turned out fine. However, I do get angry about cab drivers who won’t stop for me. The prejudice that I get isn’t going to get any easier for me as I get older, so I try to take the time now, while I have the energy (and the privilege) to report discriminatory behavior.

I just reported them through the City of Portland’s online complaint form and to the cab companies. The city emailed me back immediately to apologize and to let me know they were addressing the complaints. Both Green and Union took my phone complaint and said they would investigate and likely reprimand the drivers.

Since I benefit daily from the activism of people who hard core chained themselves to buses in the dead of winter in the 70s and 80s, I figure I can spare an hour to try to make sure that current ADA law is enforced. I also think of places like New York City where activists are fighting hard to get the city to make all taxis accessible to more wheelchair users.

Tiny scooter test run

Last week I got a new tiny mobility scooter. It is 35 lbs and easily disassembles and folds. Here I am out on my birthday at Pier 39 after a ferry ride with friends!

Liz travelscoot pier39

It is a TravelScoot Junior Deluxe, ie, the version for short people or children, and with a lithium ion battery. About a third of the cost of the scooter is in this battery. The “Junior” size is pretty good for me. I’m 5 foot 3 which is at the top of the recommended height. I went with the smaller size figuring it would be easier to handle while I was folding it, and also because the Junior size has 2 inches less width than the regular model. So, in theory I can fit through doors 24″ wide, same as with my manual wheelchair.

Assembly of the scooter was easy. It took under 10 minutes. The assembly instructions were slightly different from the manual shipped with the TravelScoot Junior. There was a little supplement that showed how to position the battery upright in the back for the “Junior” version.

The battery fastens on with velcro and is easy to plug in and unplug if you have good dexterity. I am mostly doing this while sitting on the ground — or I can do it leaning over from the scooter seat. My only quibble with battery setup is that I can’t charge the battery without taking it out of its tray, because the charging port is blocked by the side of the tray.

I put a Crampbuster on the throttle so that I can control the scooter’s speed without constant gripping, which would be hard on my arthritic hands.

Comments on driving the TravelScoot Junior:

It coasts down hills. The brakes work fine. Easy to drive. Reverse works well, and is nice and fast. Acceleration is slow whether you are reversing or going forwards, but not too slow. This takes getting used to. My phone’s speedometer hovered around 4-5mph as I zoomed around. It is a little bit tricky to match paces with a walking person. To go slower than the max speed, I have to squeeze the throttle exactly right. If I let up the pressure the scooter slows down.

There is no parking brake so if I pause to mess with my phone, I need to park carefully. This is quite annoying on the bus, but I can still handle it. It means that in order to ride the bus with any ease I will need to rig up some kind of parking brake!

There is a slight tendency to “drift” or stutter sideways a little bit when going fast on a bumpy street or sidewalk. The undercarriage clearance is fantastic. I could probably hop a low curb in this. (Slowly)

I would like to customize or get a new back support as it is a little too high up and far back to support my low back, which needs it! It may be possible to just swap out the entire seat. It is a standard pole with clamp assembly, like for a bike seat.

So far I’ve put this in the back of cabs a few times. I like that I don’t have to ask a random taxi driver to help me lift a 95 lb machine into his trunk. Instead it is something I can easily lift myself.

It would be good if I made a special padded battery carrying case, like a battery messenger bag, for when I need to put this into a car. TravelScoot owner manual suggests a padded lunch bag, but the battery I have is too long/wide for a lunch cooler bag. Here is a good craft project for my hackerspace. If I make a battery carrying case I’ll post its design on my blog!

I have also successfully grocery shopped with two backpacks and a large bag. One backpack hung off the seat back, another from the handlebars (which is awkward and I don’t really recommend it) and the large heavy bag in the red canvas shopping tray below the seat. That thing is just fabric, and attached with velcro, but I can tell you it carried about 30 lbs of cat litter and cat food with no trouble at all.

This scooter makes people stare, and ask questions, much more than my usual mobility scooters or manual wheelchair. I need to carry small flyers with an FAQ.

For the FAQ:

* “Does Medicare pay for that” (People on the street want these for their older relatives.) My answer: Probably not. And I don’t really know. I have never yet been on Medicare.

* How much did that cost? (An awkward question. I answer by saying “You can get a mobility scooter from about $700-2500” That way avoiding standing around at a bus stop admitting I just dropped 2K on this beast. I did not mind so much saying that I bought my old Zipr for $700. Class guilt . . . )

* Is that electric? What the hell do you think, I make it go with the power of my mind????? Oh, people.

* How far/fast/long does it go? Several miles, all day at least, 4.5 miles an hour, charge the battery by plugging it in overnight.

* Can you put that in a car? Yes you can and it easily folds up.

* How heavy is it? 35 pounds.

* Where do you get them? (Let Me Fucking Google That For You) Oh ok. *sigh* Travelscoot.com. Someday I hope these things are just in every big drugstore, Target, Walmart, etc. Or just in bike shops and you can test drive them there!!

* Yes, it has reverse. No, it does not beep. No, I really don’t want it to beep. Do you beep when you take a step backwards? Well then.

* What if it breaks? Yes. What if. That’s the million dollar question. You better learn some things about electronics or cultivate a relationship with your local electric bike/scooter repair shop. The thing has a warranty, which I will probably be exploring at some point . . .

* Not asked but should be on the FAQ: You need to have good balance, ability to squeeze the hand brakes, and be able to transfer independently to use this. 3 wheels is not usually a good option for an elderly person as you can easily tip over.

There is room for competition for scooters like this that have a few more features but are still stripped-down, lightweight, and easy to understand for maintenance and repair!

There is a fantastic blog with Travelscoot reviews by Elizabeth Fisher that has reviews and photos by many people using their TravelScoots.

I put up some unboxing and assembly photos. Feel free to take a look at all my photos on Flickr with the travelscoot tag .

In short: this is a GREAT scooter if you have 2K lying around and you are a very nimble person who for one reason or another can’t walk very well. To drive it, you need good balance and good hand control (brake squeezing especially). It could be possible to modify a travelscoot with a custom seat to meet your particular seating needs!

Random encounters while wheeled

The other day at Hyde Park Pier I was out with the kids to look at the historic ships. It was pretty awesome. We looked at the steam engines and the huge wood shop for shipwright work, tried the block and tackle, read all the signs and sat around staring at boats coming in and out of the harbor while eating ice cream.

I had a funny random encounter. We were loafing around eating our ice cream cones. Me in my manual chair and the kids standing around right next to me. Close enough to be jostling me by bumping into my wheels. I was looking down in my lap at my phone. Some lady swooped into my field of vision, like bent over me with her face looming up between where i was holding my phone and my face. (You have to picture how sudden, awkward, and intrusive that was!) She put something on my shirt, saying “Here you go” in a syrupy voice. OK, what the fuck! I looked down and it was an admission sticker to get on the historic ships. “Uh thanks but…. Ummm….” I tried to talk with her but she walked away too quickly for any reaction to happen. With one hand full of my ice cream cone and the other on my phone, I wasn’t going to be able to chase her! She had whitish grey hair and I think sunglasses.

Ticket lady, if you read this, I’d like to ask you: Seriously, what the fuck was in your mind at that moment?!

I’m trying to imagine what was happening in her mind. I get where you might want to give away your admission pass to a park, or your bus transfer. But would you go up to a total stranger and stick it on their shirt front without any interaction?

No!

Not unless they’re a wheelchair user in which case I guess all bets are off. Kind of like petting a stray dog isn’t it!? Or like, oh hey, it’s the Hyde Park Pier crippled stranger petting zoo!!!

So also, there wasn’t like some indication that I was wistfully gazing through the railings at the park exhibit that was too expensive for me to afford with the kids (who god knows she also probably pitied incorrectly). It was just a plain old pity move full of really weird and offensive assumptions. Like a combination of class assumptions based on my being disabled, and, an assumption it is just OK to come up and lay her hands on some stranger in a wheelchair, and run off. I think in her mind it was an act of beautiful charity. It probably made her day. But it filled me with rage and I couldn’t do anything about it.

I couldn’t bring myself to mention it to the kids as I didn’t want to spoil the mood of our nice day.

If she had just said “Oh hello would you all like a free pass”, that would have been fine but I would likely not have taken it.

I was pleased to find one of the ships had a ramp and was mostly accessible. No one was checking tickets, since it was the end of the day.

liz and milo on a wooden ship

On our way out of the park I told the rangers how nice it was to find an unexpected ramp and get to go onto a ship. They told me to come back another day to the ticket booth and I could get a lifetime discount park pass good for the state and national parks (I think) which you can get if you’re disabled or blind. That was helpful (and nice).

That kind of park pass I will happily take, though I’m also happy to support the park system by just paying admission. Since usually I can’t get around parks and exhibits very well, and making them accessible probably will never happen, the discount or a free pass seems fair !

Another random encounter that came out better than expected. I was greeted by someone who works in a local store I often go to. She apologized for asking and then asked why I have a wheelchair. I swallowed my stock of snippy answers and explained my medical history in front of my child while we hung out outside some bar on Mission and I was covered in grocery bags. *eyeroll* She was asking because her hands and feet go numb and she is worried and wonders what things will be like if she ever needs a wheelchair and how she can tell; her doctor told her probably it is because she uses bleach when she scrubs and cleans. I opined that was bogus and the good thing about doctors is you can go to another one and get a second opinion. It is sometimes easier to forgive the questions inspired by fear and personal motivations when it is truly personal.

But I’m so tired of being a rolling public diplomacy and information booth. I then had to explain to my son that, as he may be aware, I don’t normally explain my medical issues to strangers on the street but in this case I made an exception and felt that she could use a friendly word.

The other people asking me lots of questions lately are cab drivers. Because my smaller size scooters have been broken and the big one I use to get around the neighborhood is too big for the bus, I’ve been taking cabs. Drivers are universally astonished that I have a job, that I’m out by myself, etc. (Even though obviously they drive by people in wheelchairs all the time who are “out by themselves” – invisible ones????). Sometimes they want to know about the folding scooter because they have an older relative.

Welp, it’s complicated. I think the buildup from being patient with most people comes out in wanting to punch Sticker Lady right in the snout though it would have been a waste of good ice cream . . .

Perhaps this rant about minor annoyances will educate a random stranger on the internet and thus save some other person on wheels some hassle!

Back in the saddle!

The last few months have been rough but I’m feeling much better and am back at work. Today, I appreciated that even though it was cold and raining, I was able to do all this:

* have coffee in the morning
* eat some toast
* work and feel like my brain was back online
* go out on my scooter to a cafe with friends to co-work
* delicious lunch at cafe
* went up and down the stairs twice to do laundry

All without painkiller and did I mention how nice it is to eat real food again after 3 months of gastritis (crackers and broth)? Food is so amazing. I’ve been thinking over my gratitude towards my friends and family for being around and taking care of me while I was so sick. My employer was super understanding about things too, which I appreciated.

Internally I battled the feelings that it was my fault I was so sick and simultaneously that I probably was not really so sick; if I just exerted more willpower I could magically overcome it. Neither of those things were true of course. It’s easy to know that intellectually without being able to believe it wholeheartedly. It is a flaw and a strength that I like to keep the illusion of control. Now that I feel better, I can look back and believe: OMG, I was incredibly ill and weak and unable to eat or barely move around! Every night I think for a minute how I got to the point where I couldn’t straighten out the blankets by myself. Ugh. Fuck that!

Meanwhile my friend Ron has been in and out of the hospital. We ended up in the same hospital on the same floor as next door neighbors at one point which was pretty hilarious. As so often over the years we’ve known each other he was someone i could rely on to chat with and know he totally understands, way better than I know it really, the experience of just carrying on with your life and interests and feelings in the middle of illness, pain, or physical limitation.

I often think over how many times I have been sick or extra limited in mobility and been afraid I will never bounce back. I have always bounced back! I am a badass! Even if I won’t get younger or any less disabled I will remain inherently BOUNCY. Keeping that in mind for next time. (Obviously, having money, support, privilege, and decent medical care also helps; I’m very lucky.)

Here is a photo of me holding up a giant table saw while wearing a tshirt with a stencil of a person in a wheelchair with flames coming out the back,

table saw

My extra nice news is that I have been driving my car a little bit, 10 or 20 blocks at a time. I’m not able to do that every day and it makes my leg and ankles hurt but wow it’s fun. I was right on the edge of selling the car. I had this moment driving the car back home from Double Union one night where i was singing along with Fairytale in the Supermarket and some other Raincoats song and crying at how nice it was to drive 20 blocks in my car independently. Ridiculous but true and I’ll never forget the feeling. Now I’m back to sometimes driving and using my manual wheelchair, which isn’t really better than scooter + bus, just different. I feel more nimble and sporty in the manual chair. It’s more fun for me if I’m indoors or have only a block or two to travel. It also makes taking a cab by myself easier to do, since I can disassemble and lift my manual chair (a Quickie Ti II) without any fuss. Going downhill once in a while is really fun (speed!!) and I love to balance and do wheelies, and the lights on the front wheels.

During the illness I was on a lot of painkillers and just needed to pass the time. I played Hoplite a little bit, nethack, and read all of Agatha Christie’s published detective novels and short story collections, taking notes on each book and vaguely thinking about what her stories reflected of history and social change. It seemed like a good “i’m going to be ill for at least 2 months” non-taxing goal. I felt a little sad to come to the end of her work. But not quite sad enough to find the paper versions of her romance novels that she published under the name Mary Westmacott. Maybe someday through the library.

My sacroiliac issues are acting up so it is tormenting me to be in pain all down my leg. Think “cranky old lady with sciatica”. The nerve pain makes my right leg cold-sensitive to the point where just room temperature air feels like a million ice needles. And sometimes my leg collapses without warning. Fuck that! Thank god the pain clinic moved up my back injection a month, so I get it next week (steroids + anesthetic in the s-i joint, takes me down for a few days but then is amazingly effective). I always forget how it is. I am nearly desperate enough to go back on lyrica or cymbalta or something. Nearly. Crazed with pain sometimes over here. Yet still functional to walk around. The last injection was in I think early October so I’m overdue for it. Maybe someday they can just fuse that thing or put in a metal plate or something. It seems like a very stupid and useless joint to have arthritis in.

Double Union is completely awesome. The kids and Oblomovka are great. I’m enjoying work and messing around with Python for work, looking forward to PyCon in April.

My hope now is to be able to keep up this pace of leaving the house a few times a week, make it into the office regularly, and start swimming again at the YMCA downtown. OK hopefully that’s off my chest now and I can write about other stuff like books, games, hackerspaces, feminism, and work!

Geek Girl Con, Saturday!

I’m at GeekGirlCon today!!! It’s awesome! 3rd year in a row!

I spent yesterday in The Attic, Seattle’s feminist community workshop/hacker/maker space. The Attic’s booth here at GeekGirlCon is representing the space’s combination of fiber, art, tech, robots, geekiness, hacking, and making things very beautifully and there are tshirts and stickers! That’s where I’ll be on Sunday morning and part of the afternoon, orbiting between the games area, the Art Alley, and The Attic’s table.

the_attic_seattle.jpg

Here are some quick shout outs to people I talked with today and cool stuff I saw.

Heroes & Inspirations who make jewelry and art. Their new Ladies of Science series is great. There’s a Heroes and Inspirations Ladies of Science Kickstarter! I’m definitely backing this project and want several of the wearable tributes to admirable scientists!
Stasia Burrington who has a print (and tshirt) of a woman in a pile of cats and another that I love that is kind of the same concept with books. As I look through her etsy shop I want to buy a zillion prints… her work is so charming!
Bhaloidam, an interesting board game that is a storytelling RPG.
BigBrainedSuperheroes Club, a STEAM education organization!
Monkey Minion Press who have very beautifully done posters with SF retro WWII themes, often somewhat creepy.
ReelGrrls who are working with young women to teach video production skills and to support their work as film makers.
Women’s Funding Alliance which is a big philanthropic collective.

I got to talk a bit with Tempest who was on the panel “Changing Culture in Mainstream and Alternative Spaces” which I thought of as the “safer spaces” strategy panel. The panel was good. I also met up with Sigrid Ellis who I know from WisCon and who is now editing Apex Magazine. In a totally lucky random encounter I ended up talking intensely with Elsa S. Henry from Feminist Sonar and went to her Disabled Geeks panel which was not in the schedule booklet but which was well attended. Here are my notes on the panel! They’re a bit rough and were basically liveblogging that I have not fully edited.

Elsa and Stevi Costa are speaking on the Disabled Geeks panel. Elsa’s talking about comics and characters with disabilities. Disability is used as a narrative crutch. The words “inspiration porn” are also being tossed out there . . . for those of us who might be hate-watching things like Glee or watching Push Girls. (Audience LOL, ruefully). Disability is too often used as a metaphor for overcoming obstacles. It’s rare to have a character born with a disability who did not get bitten by a radioactive spider but has been how they are since birth.

Discussion of the Glee character who is a wheelchair user who is played by a non-disabled character. Elsa describes the horrible scene where he gets up out of the wheelchair and dances, which many people felt was a huge problem, since you don’t have to miraculously get out of your wheelchair in order to dance. You can dance while using your wheelchair or while you have whatever other impairment you happen to have in your life. Your dreams may be things that you can actually fucking do. Etc. An audience member describes her teeth grinding as the pretty girl gets to walk across the room getting out of her chair in some other episode. As if, aww, the other guy is the loser in the chair. There is also an Xmas episode where the guy wishes he could walk. Critique of the “walking” exoskeleton thingies. My personal reaction is that I am kind of glad I have never watched this show.

“Yay, accepting our cyborg bodies and then we become your OVERLORD.” *audience cheer*

Something something crip sex. (I had lost the thread, but start paying attention at these words…) “How did that feel to you?” “I dunno”. It was amazing but it just can’t make up for that dancing episode. Another episode where bullies take a blind person’s cane away. That was a painful moment for Elsa since people have done that to her deciding that she doesn’t need her cane so that they can bully her. Invisible disabilities represented, for once the character with Downs Syndrome is played by an actor with Downs. Great character usually but the school shooter episode was incredibly bad. Inconsistent with the character, makes it look like PWD have no future after the insitutional support of childhood and youth. Yes there is fear but they blew it out of proportion and people said online “I wonder if that’s going to happen at my school”. It represented disabled people as violent when actually we are often the targets of violence.

How about Oracle. (I cheer). Elsa loved Oracle, a great superhero with disabilities. And then they took her away. Oh, you’re disabled, you’re like one of the X-Men. No actually I’m not. And Oracle was a woman with an actual disablity who lived with her physical impairments.

In contrast in the Daredevil movie, she lasted 2 minutes, the movie was too much. “My nickname is snarkbat, I use snark to echolocate.” Why doesn’t he use the cane while he’s in the costume!? I’d like to see a superhero who uses a cane. So I had someone make me one. People with disabilities should be able to cosplay anything they want. My blind cataracted eye is not a special effects contact! Please do not ask me where I bought my own eyeball. Then I will tell you I bought it at Rubella and you will feel like a jerk. I’m playing Odin today. (Elsa holds up her cape with a raven (Munin) attached to the shoulder.) (I asked her earlier if it was Hugin or Munin) People ask Hey where’d you get that awesome contact, they assume you couldn’t be disabled so you become strangely invisitble again. Elsa asks for abled bodied people to not cosplay disability. It makes many of us really frustrated. We need to be recognized and read as people with disabilities. If you are playing disabled with your pirate eyepatch you are making the world worse for people who actually need to wear one. The fictionalizing means the people aren’t reading us as real.

Why would you go to all the trouble of finding visually impaired young women to play helen keller but as the understudy for the not-visually-impaired main actress who got cast for the role. There could be the name recognition if you start casting us in the roles.

Cons and accessible space. Getting trampled and pushed around in crowds. This con is good. People are educated to the point where they are not pushing into people in wheelchairs, people with white canes. This con has an introvert alley so people can go have some quiet space. We have a wheelchair lift here at the stage. (though . . . no one on stage who is a wheelchair user. . . .) Stevi asks Elsa when she goes to larger cons that don’t have any focus on inclusivity do you feel that you become invisible? Geek culture is not as inclusive as it is supposed to be. That is why Elsa does not like to go to cons. She doesn’t like feeling invisible and being trampled. She lives in NYC and is used to that environment but to come into a safer space where it’s “our people” it would be nice not to be run over. (I so strongly agree!! This feeling only grows in me that we have to insist on respect from our communities.)

Audience question about therapy dogs and fakers. Yeah Hmmmmm. Panel handles this question with perhaps too much patience. OK I popped up and asked the asker if she has a special need to police whether people are really disabled or not or a concern over being allergic to dogs or dog phobic so it becomes an issue for her or people around her. Come on. Is this the moment?

Elsa talks about how she wears glasses and can see partially. People go Hey are you really blind? Yes. they don’t give white canes out like candy and I really need it. People come up to me at cocktail parties and ask me how many fingers they are holding up. People just take my cane because they are curious. It’s not okay to just investigate my disability. Peeople with disabilities are not public property. We are human beings. TELL IT. Stevi adds that we narrativize it to where the story is that you have gone from being able-bodies to disabled and that is the dominant story.

Aud comment about being happy to be talking about people who were born with disabilities and glad we’re having this panel. She wants to talk about more pop culture and the show Covert Affairs. The character who is super sexy and confident. He is not really blind but the attempt to make a positive character is awesome and rare so props to them for trying. Elsa says she will have to watch it. She is the only blind burlesque performer she knows about. How does she know she’s being attractive? Well, she practices a lot and asks her friends if she looks good in her costumes.

Aud comment about the school shooting story. She wants to know recs for characters where their disability is not the issue.

Elsa recommends Switched at Birth it is sort of ridiculous and has some sort of weird republican thing going on, but they have an entire episode done in ASL where the characters are all teenage girls.

Stevi likes the Michael J Fox show because they address the inspiration porn question head on, in episode one and then they move on and he is just a character who happens to have Parkinson’s and that isn’t what it’s about. The first episode includes some epic crip humor. Then it becomes a normal family sitcom which includes a character with a chronic condition.

Another rec from the audience, the forensic doctor on CSI. He plays guitar, he happens to have one leg, he is awesome.

Back to superheroes with disability. The character Hawkeye lost 80% of his hearing. it became part of his character but then of course then in 2000s he got reset.

Can we stop resetting the disabled characters? OMG.

Fanfic writers cherrypicked that one detail and wrote after the Avengers movies how he had hearing loss. A lot of it was great but there was also a lot of problematic aspects where people wrote it as inspiration porn where he overcomes his hearing loss etc.

Breaking Bad and a character where a disabled actor applied for a character who was written as able bodied and he is a great actor, they just put it into his character, they didn’t reject him from the role, it was just like the color of a person’s hair or whatever.

Cosplay and able bodied people and disabled people What if there is an able bodied people who really likes Oracle and wants to cosplay Oracle. What if there’s a person in the wheelchair who wants to cosplay Supergirl. What then.

Elsa says people in wheelchairs can cosplay whoever they want. But if you are able bodied and want to cosplay Oracle just dont use a wheelchair. If you dont need it please don’t use it. Do not put on cripface. Geordi’s visor is fiction, it is not a real device so it isn’t going to be mixed up with reality. Stevi thinks it is possible to use an assistive device in cosplay in a way that is respectful, but it is tricky. Elsa wants people who are not disabled not to be read as disabled.

(Personally I have some complicated feelings around this and I don’t like the idea that people think they can just play disability. What the hell, isn’t there enough to play with? And, it is even more complicated because of actual discrimination and also I would add in fetishists as an issue. I don’t like the idea that, as with actors, Non disabled people get attention and fame from pretending to be us and perhaps “doing it better”. They get rewarded for performing “disability” in ways that are more acceptable to mainstream culture than the actual lives and being in the world of those of us who are disabled. How can this not fail to be offensive and have the fake cripple come off as perky or happier or reacting in some way that gets props from people who want everything to be okay. My first reaction is that it makes me instantly angry. I let people ride my scooter and manual chair to experience it as fun and not unimaginable. But I hate the idea that people would pretend they are disabled as their costume. )

Elsa talking about her current work writing a game module for ghost hunting blind people, warriors of midgaard, for role playing games. I know how to do and represent this thing. Pay me to do it. Rather than thinking you know it all and faking it.

Orange is the New Black, best humor moment with wheelchair, Scared Straight group goes to the prison and one of the prisoners goes you think you’re really tough . . . She is the most bad ass, I will shank you so hard character.

The panel wraps up. I did not count the attendees but would estimate 30-40 people as I think back on how full the room was.

YAY, great panel!

The Superfest Dissie Awards

I had a great time last night at the Dissie Awards, part of Superfest, a very long running disability community film festival! Lawrence Carter-Long MCed and presented 3 or 4 short clips for each category like Worst Portrayal of a Disabled Person by Non-Disabled Actor and The Worst Disabled Villain. It was nice to see a bunch of local community leaders get on stage to accept the awards — some of the fake acceptance speeches were hilarious! Audio Eyes did an outstanding job of funny, sarcastic description that felt like watching Rifftrax or Mystery Science Theater 3000 rather than a boring documentary narration. Would listen again. It was great.

Dissie acceptance speech

My favorite was definitely the “So Sweet” which was about cute little white girls sweetly helping disabled people so I got to give several hearty rounds of booing to Heidi and Pollyanna (who along with Katy from What Katy Did, take up way too much of my brain with their angel in the house internalized ableism).

The event started off with a cocktail hour which I missed and then Lawrence opened up with a charismatic speech about how we would discern, disrupt, display, and discover as we Dissed.

Lawrence MC-ing

I can’t remember all the nominations but I did tweet most of the award winners for posterity. The Worst Performance of Disability by a Non-disabled Actor Dissie went to the guy playing the blind old man in Young Frankenstein. Prof. Georgiana Kleege accepted the award. In the world of Young Frankenstein, apparently blind people cannot get anyone at all to come over and share their soup. So sad! It was lovely to feel the audience reaction all around me as we cheered and booed how bad all the performances were as they played off stereotypes and made disabled people the butt of humor. It was often a hard call which movie to boo the loudest for as the judges watched and listened to the crowd, because the spectrum of Hollywood badness was so vast!

Shirley Temple in Heidi as she teaches Klara how to walk and then ends up being more important to Klara’s family than she is, won out over Pollyanna. It was a very hard call for me. Was it worse for Heidi to be telling Klara she could walk if she just tried hard enough? Or worse that Pollyanna told her sick neighbor lady, the one disabled person in town, that she wouldn’t die if she wanted enough to live, and then stormed out in a huge ragequit? The deciding factor for me was that it was extra, extra horrible for Klara’s dad not to love her until she could walk! Christina Mills from the California Foundation for Independent Living Centers accepted the award pointedly remarking that ther are great organizations like California Youth Leadership Forum where Klara could hang out instead of being with that poisonous little brat Heidi.

Crowd for the Dissies

Joshua Miele then took the stage to accept the award for Worst Miracle for the actor playing the paralyzed guy in Monkey Shines. I think it was voted up because the movie’s badness outshone the actor’s bad portrayal! Personally I was rooting for Forrest Gump and the moment where his leg braces exploded off his legs as he ran like a world class athlete. But hey, we’re taking this super seriously, can you tell? Josh invited his alterego, or friend, Manny Zannasshole, to give a speech about his sensitive directing and producing of this miracle moment inspired by his knowledge of “the differently crippled, or whatever you people are called these days, people with crippledness” provoking a giant laugh from many of us in the audience.

Most Tragic was a painfully stupid display as we saw Clint Eastwood feel the terrible pain of the actor in Million Dollar Baby asking him to put her down like her family’s old dog because she could never be on TV again. Wow! It had to win for being most actually horrible and harmful to people’s lives. For me it is a matter of people telling me to my face that they think it is better to be dead than like me, that they would kill themselves, etc. But for many of us it is directly a life and death matter that threatens our survival as nurses caretakers or even family members decide to express their mercy or support a person’s suicidal thoughts instead of getting them help or fighting to change their situation and society at large. So Million Dollar Baby just had to win. Victor Pineda took the stage for the award and was super badass and funny as he told Clint Eastwood he might be better off dead than that ignorant and Hilary Swank’s character in the movie could totally have better friends if he would get out of her life. I’m paraphrasing but that was the gist of it.

Dr. Strangelove then beat out Mr. Glass from Unbreakable for Worst Villian. There are SO MANY. Strangelove has to win for popularity and for the thing that most people want to joke about when they want to joke about your wheelchair. But Mr. Glass was more truly the winner for his villainy being based on his internal bitterness over being disabled! Reverend Scott (?) went up on stage to take the award with his one black glove! You would almost think he had expected Dr. Strangelove to win. . . do I smell a fixed contest here?

Accepting the Worst Villain Dissie for Peter Sellers

The Crips Gone Wild category for buffoonish portrayals of disabled people causing havoc (AS WE DO) gave us clips from Other Sister, Radio, and Blind Dating. They were all horrible. Blind Dating with a very extended scene of the guy trying to fake that he wasn’t blind on a date in a restaurant. Comedy gold!??? Aaaaagh! Then the last category was “Hey, Only We Can Laugh At That” for truly bad comedy that is “Satirization without representation”. They were all awful and I have forgotten which one won because by that time it was quite late and I was tired.

My teenage son came with me to the Dissies. He enjoyed it a lot. He laughed his head off and I was happy to share some good political awareness and humor with him. He gets enough of it from me day to day just doing things like riding the bus. How nice that he knows it isn’t just me making my usual sarcastic muttering comments. He will grow up knowing quite a lot and being a good ally for others, as well as having gotten all the awesome wheelchair and scooter rides possible.

I hope this event happens again! Thanks to the Longmore Institute and the SF Lighthouse for sponsoring Superfest! I hope I can come out to more events and meet people — I often feel totally disconnected from whatever Bay Area disability activist communities are out there as I flounce around in my own little world. I have the community feeling and solidarity online but not in person and hope to connect more in the future. Anyway, if this happens next year I will wear a sparkley tuxedo and do it up in real movie award style !!

Taking up too much space

Last night I had the incredibly pleasant experience of realizing I was in a crowd but no one was considering me as “in the way” and I didn’t have to worry about that with the same level of awareness I do in crowds where I am the only or one of few wheelchair users and where people are sadly ignorant of their own bigotry. Instead I was in a crowd where audience and performers were people with disabilities and their friends.

A layer of tension dropped away from me. I would not have to be apologetic, diplomatic, and assertive to the point of defiant all at once just in order to sit and watch the show or move around the room. No one leaped out of my way or yanked their children closer while I was 20 feet away from them. If I was in line, no one acted like I was the one person in line who was just where I should not be. If someone needed to get between me and another person or people in the room, they were just ask likely to say “excuse me” to any of us, politely, rather than picking me out and letting me know I was the one In The Way. I thought to myself: How low my standards have gotten, my expectations for other people’s behavior! How sad! But what a relief at least for this moment, this event!

This particular kind of bad behavior seems to me like it is unconscious but it reflects deep unwillingness to have people with disabilities in public at all or to consider us fully human. We are not considered citizens of the world. When we are in it we are always In the Way. A person with a suitcase might be in someone’s way. But just by being anywhere in a wheelchair people want to decide where I should be and put me there. It’s like, get in the corner!

This happens to me every day in every store, street, bus, or event I go to. It happeend last weekend at my conference and in the airport and in restaurants and bars and everywhere.

OMFG, you damn walkies!! Chill out!! We are all just people co-existing in space! Say “excuse me” if you want to get by, like you do with every other situation! Like I do if I want to get by as well! Don’t be acting like I am too big or too fast or must be specially humble and apologetic before I get to take up space in the world!

Tuesday I was at a conference party sitting around a table on a big, open patio. Behnd me there was a little group of people talking. After about the 10th person shoved into me trying to go between my scooter and the group standing a few feet behind me, some guy said something about how I should move so he could get by. I had had enough. I turned on him like a motherfucking cobra and said, “Why do you not just ask the guy right there, the guy behind me, tell HIM to move? Say excuse me to him since he can step aside easily and I can’t.” About 1 out of 100 times this happens, I explain it to some random stranger who wants to walk through a line or a crowd and point out they can just as well ask a standing-up person to move.

My loved ones and friends are very familiar with watching this play out. I am comforted that they notice how it happens over and over and that they share my reality. Constant social aggressions (I can’t bring myself to call them microagressions) take their toll.

Last weekend at the end to my own work conference one of the conference organizers told me I was in the way because “PEOPLE” needed to get by. She gestureed at the scooter with a sweep of her arm. PEOPLE might need to get by!

My scooter was not in the way. It was parked behind my own chair at a table with plenty of space behind it and not blocking any corridors. She did not seem concerned that ALL OTHER WAYS and all other places to sit were blocked for me, because in her mind, I am not “People” who might need to get by. I am an inconvenient Thing — that unfortunately can speak. I told her I had parked carefully so that no access for anyone else was blocked. The people next to me could get up from their chairs without any trouble. Others could walk past in every direction. But her sense of the rightness of the universe was perturbed, for her, unbearably by my presence.

That sort of thing happened over and over in the course of the weekend. It is why I talk about community education. People need to think through their assumptions and their bigotry. I can’t teach everyone how to behave, on the spot, all around me, every day. Don’t shove into my wheelchair like I don’t exist. Don’t pat me! And don’t fill up a room so I can’t get around, then tell me I can’t be in the one spot I can get to! Don’t lock the elevators and don’t act like I’m a liability waiting to happen! How hard can it be to treat me like a person?!

Last night I was overwhelmed with the feeling of not haveing that feeling. Then as I paused in an alcove of the lobby of the SF Women’s Building to call a cab. An usher for the event, I am fairly sure a volunteer or associate from the building not from the event itself, was standing to the side and in front of me. She told me I was in the way and asked me to move so that people could get by. Amazing! I looked up at her and pointed out, the corridor between the alcove I was in, and the central bit where the elevator was, was enough for at least 3 people to pass, 2 moderately sized wheelchairs, I was not in the way of anyone, and, she was standing more in the middle of the corridor while I was off to the side, so really, she was in the way much more than I was.

I asked her why she felt I was especially in the way more than herself or anyone else. She was unable to answer. I said it was egregious and horrible for her to say this to me and put it onto her to think about for her future. I said it at some length but diplomatically and included the words “I am angry.” I was extra sad because she looked like someone I would in most situations be friends with and want to talk to. Meanwhile people rolled on by us leaving the building and sometimes pausing in the hallway to chat with each other, as people do. No one evidenced impatience or acted like anyone else was in their way.

Well, I must report that I stayed in the spot. I took a picture of people passing by me and then called my son over from where he was sitting with his book, to cross the lobby and take a photo of where I was sitting so that I could write this up and show how very Not in the Way I had been and why this stupid incident made my head explode. I could hardly have been less in the way of anyone at all!! You can go to that exact spot in the Women’s Building and stand or sit there and see for yourself how unobtrusive it is.

Intheway-hallway

The sign in this photo is offset (way closer to the camera) and not in line at all with where I was sitting. It may also not be clear but I am fully in a little alcove, ie, my wheels were inside the curve of the stairwell. In other worse this was my effort to park temporarily in a place where I would not block any traffic or be stumbled over.

It would have been maybe more sensible of me to go wait and text on the other side of the lobby. I get that. But…. I had the feeling of just being a person in some space that many people were using. Many people were standing around. They were not told to move. I could not believe I was considered to be in their way but they were not in mine. My fellow chair and scooter users were just hanging out and were capable of saying excuse me to each other if there was any inconvenience. I *knew* if an able bodied person had been standing there, in the same spot, taking up the same space, the usher would not have perceieved her as an obstacle.

Here is the view from my niche as people went by.

Corridor womensbuilding

I don’t think I swore at the usher and I remained “polite”; it was full on fierce coherence from me as I explained exactly how bigoted her action was. At some point my child and I went to the door to look to see if the cab was there and then we went to stay on the other (totally empty) side of the lobby.

As we waited for our cab at one point I looked up and saw a woman talking on her phone, standing right smack in the middle of the corridor several feet directly in front of where I had been waiting when I was in the way. She stood there a few moments as the usher looked right at her. Finally I rolled up and addressed the usher conspiratorially. “Hey, I just wanted to point out how very In the Way that lady is. You should tell her!” The usher said “UMMMM . . . . DO YOU WANT TO HELP ME MONITOR THE HALLWAY?” Nice move, actually, that made me laugh! It was a pretty decent attempt at defusing, but she had already gone too far and was a little too condescending for me to bear at the moment because she never bothered to apologize. How hard could it be to think it over for a moment and say, “Oh, I guess I did that. Sorry!” Apparently harder than figuring out a strategy for how to co-opt the angry cripple. What the hell is WRONG with people! Hahahah!

I go into a place, I think about where to put my scooter or wheelchair and where I can sit, and whether I am going to need to park it away from me if I sit in another chair, and whether I need help to move things to fit into a space politely, and so on, ALL THE TIME!

But people want to scold me and explain how I need to behave no matter what I do, because disability is disruptive and they feel perturbed and in need of being in control of something they don’t understand. How many bus drivers scold me and tell me the right way i should wait for the bus, signal the bus, get on the bus, be on the bus, communicate with them at all, and get off the bus. Do they think I was born yesterday? They scream at me to tell them where I’m going, they refuse to let me on because there is “no room” though they just let 20 walking people on before me, they scream “WHEELCHAIR GETTING ON!!” 5 times at the whole bus before they extend the ramp for me as if I’m incapable of going the 5 feet onto the bus without ramming every person there without the Enterprise going on Red Alert. They can’t take any of this knowledge on themselves and they’re not scolding other people who might take a moment to fumble for their bus pass but it’s open season on wheelchair users to lecture us like you’re a goddamn social worker. Nuh-uh. Not having it.

I am not an emergency or an obstacle! Get used to it! My public presence will just have to be YOUR mild inconvenience!

This ends my minorly pissed off rant and I will now go write another post about how nice the event was and top-post it on top of this long angry assertion that I and my MONSTER TRUCK MECHA SUITS can exist in public.