Category: disability

powering through vs. space to heal

Posted on by Liz

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

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

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

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

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

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

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

liz in wheelchair with a cat, smiling

Disability Technology Foundation plans

Posted on by Liz

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

Here’s the talk description:

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

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

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

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

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

Disability Inclusion and Technology

Posted on by Liz

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

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

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

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

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

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

Onward, to the stuff about grants!

What does DIFxTech mean?

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

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

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

Some examples for DIFxTech

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

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

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

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

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

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

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

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

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

a jumble of wheelchairs and wheelchair parts in a workshop

Got the Rona

Posted on by Liz

After 2 years of being pretty careful we finally got covid. It hit me kind of hard because of having asthma I guess. I’ve been off work for a month, hoping to improve this next week and be back at work but that will depend on whether I can talk without coughing.

It has sucked but I am reasonably good at being sick in bed. One aspect of being disabled that actually helps sometimes! The down sides of having covid while disabled – the logistics of getting to doctors’ office was kind of hairy since I could not handle a) the bus b) driving c) breaking down and putting together either the manual or the powerchair for transport in a car. My sister drove me to to get a monoclonal antibody infusion (TOTAL INFUSION was the hilarious 80s name of the clinic) and then isolated in her basement for days in case I had exposed her. I didn’t want to take a cab. Then at some point I thought about going to urgent care (because my blood pressure was out of control probably from the high doses of prednisone) but could not figure out how to get there without once again asking someone to potentially be exposed and then have to isolate.

I am fine now, just still coughing/ asthmatic when I move around a lot, talk, or laugh. NO LAUGHING ALLOWED. Goal is to quiet this reaction via more inhalers, nerve drugs like gabapentin which apparently help with dry cough, and more tea with honey than seems humanly possible.

I also gained 10 pounds almost instantly from the prednisone and eating whatever I felt like eating, which was: everything.

I missed a bunch of events, concerts, and so on that I had wanted to go to and will probably keep missing them as I will likely go back to work before I am 100% better and the ramp up to Actually Better enough to go out in the evening will be long and slow. So that also sucked.

Luckily the weather was amazing so I spent a lot of time, after the first two weeks where I barely got out of bed, lying on a sort of pallet on the lawn in the garden. I feel very lucky to have a sunny little garden with its astroturf lawn, hummingbirds, finches, and flowers. At first I was getting help from Danny to set up the little bed and drag it back to the Underhouse every day but now I can do it. There is also the hammock and my amazing outdoor claw foot soaking tub. Variety in where you park yourself is really good when you are sick, to keep up morale!

Milo turned 22 and A. is 19. They will likely be going off to grad school (library science) and university (probably in the UK). I’m so proud of them both!

Milo got covid, rather lightly, but was better within a day or two. Danny was pretty sick and slept through nearly a week (some of that isolating in the basement, but we didn’t isolate well enough) and then has been still a little bit sick for maybe 3 weeks or so. He is better now!

SDI & the EDD have been a non ideal experience, as they seem to have screwed up somehow. I think my doc sent in the paperwork but EDD attached it to a claim from 2014 (??!!!!) So my claim is in limbo, it doesn’t have a case number yet, so when I call on the phone I can’t get to the right menu to get a person, and I also can’t send a message since there is no claim to do it from, only a “pending” claim. ARRRRGH.

We are just starting to have people over to hang out in the garden. It’s nice but I find people to be exhausting. I holed up in the room with the door shut kind of a lot just because everything seems irritating and overwhelming and I get a headache quickly if things are overstimulating.

Somewhat inspired by the sudden heavy hitting covid, I started filling out a little workbook called “I’m Dead, Now What?!” that is supposed to gather all the information that would be useful to your survivors or executor of your will. It is interesting to contemplate. Mostly I worry about the giant mess of books, papers, and magazines that I have been lugging around for my whole life and which has NOT gotten any more orderly. What would anyone even do with it? The least I can do is put it in order and sort out anything “important” (LOL? is any of it?). Some of the zines, at least, should go to a good zine archive and/or maybe get scanned. So that will be a goal for this year. Maybe I can hire someone to scan them once I have a pile ready.

I would not call this “Long covid” by the way – Just a long recovery since my lungs got hosed and the exhaustion kind of lingers. I expect in another month I’ll be frisky as ever.

ups and downs

Posted on by Liz

My ankles have been so great and I’ve been walking more and more but I guess I went too far – maybe the squatting down while arranging stuff in the garden and digging or maybe just the cumulative extra walking was too much too fast. I thought I was being so cautious – literally years of waiting to be ready to even walk half a block to the corner and back – And then once able to do that I have waited like 6 months of building strength before trying to do anything further.

It feels like a bad dream.

I’m back in the manual chair in the house. Got out the shower chair.

Pain is not great but I can’t move my ankles at all without some pain and probably I should break out the walking boots/ night splints. It is painful/stiff/burning feeling but not as bad as it was that first year (no splinters/stabbing/boa constrictor squeezing feeling but that is what i’m scared of)

I can’t even express how much this sucks and how scared I am that it might get really really bad again like in 2011.

Here’s hoping not and that some days not walking, lots of forbidden NSAIDs, ice, elevating, etc. will let my ankles heal up again. I will also go to my nice new doctor. Just go all in on the NSAIDs and get some long lasting variety? (whatever replaced celebrex/vioxx if that exists?) Prednisone? Orthopedist again for round million of MRIs? Oh god.

Well whatever, I can cope even if so.

I am on day 3 of this. It wasn’t so bad today emotionally because I went out to get my allergy shots (train ride, nice lunch, allergy nurse was super nice, lovely view of the city to the bridge to the ocean, from UCSF clinic windows). They are going to do my Xolair shots too so that I don’t have to make 2 trips. Immunotherapy every week for now, and xolair on top of that every 2 weeks.

Pollyanna mode thoughts:

This house is so much better and easier than the old one to be fucked up in. Space to roll around in my manual chair! Various different places to lie down with my feet up – two whole couches and the bed and actually also the kids’ room in a pinch – If I can get down the stairs, my gravity chair – And I can sit on the porch steps in the sun or the tiny back deck for a nice view.

I am better off financially than before & now have both money and skill to get help for things or figure out what material / assistive device things to try.

I’m stronger physically than 10 years ago even if I’m, well, older.

It’s definitely enjoyable rolling down the long, smooth wooden floor hallway with the cat in my lap and pulling up with a little spin at the end. I always enjoy my competence at wheelies and wheelie-ing over a little bump (which we have from the hall into the kitchen). The cat really loves a little ride!

And in “experienced with this shit” super crip mode, in the good sense of super crip, I have a plan.

– Nice new (wheelchair user!) doc is out on leave. Hope she is OK. So I have a tomorrow morning remote appt with a physician assistant and will ask for extended release NSAIDs and a referral to orthopedist

– Actual doc in person appt in a couple of weeks (first available not-an-old-white-guy doctor that I can get to easily on a bus)

But I already know the things I should do, more or less, which are:

– Keep a log and follow a schedule to note pain levels and do regular voltaren/advil-with-crackers/ice

– When pain level gets worse over the day, amp up my elevation/icing/rest and don’t try to do stuff even in the manual chair

– figure out when in that pain level sequence I should take painkillers (probably “when it wakes me up at night/ can’t fall asleep” – otherwise probably not, or maybe some CBD/THC drops in evening but no opiates)

– So as not to mess up the rest of my body, spend some time periodically in the chair doing some seated tai chi/ stretches

– Experiment with night splints as long as I can tolerate them to keep things immobile

– Shower chair is up now and I will use it till really better

– Obviously, limiting my leaving the house or using the stairs (can do it, and should do it for my own physical and mental health, but can’t just do it frivolously)

– Ask for help more, which I hate even though Danny totally understands

Considering the many things I did kind of in rapid sequence that might have got me to this state. Experimenting with walks more than a block. Doing new foot exercises and stretches. More extreme stretching (like squatting to do things) Going out a lot and sitting up all day several days in a row (office day, night event, two night events in a row, extra office day with photo walk in evening (why did i do that!) I just have been so excited to be able to walk more and it felt actually good to be more active. So I guess I crossed that line without knowing it.

Building up strength

Posted on by Liz

I am able to walk much further these days, mostly managing OK in the house and able to go out every day with some interludes of using my manual chair in the house (and powerchair for most outings). My new foot and ankle PT exercises are much harder and I’m venturing out of the house on foot (to visit next door or 2 houses down- a very steep hill) Today I figured I’d try to get to the bottom of the hill and back. I have a new cane with 3 legs that unfolds to become a seat so I used that on one side and my normal cane on the other. Down was OK, I sat for a bit on Mission and listened to the music coming out of the club on the corner, thought about whether I could make it across the street to Walgreens and buy something and not suffer too much from it now or tomorrow. On reflection I was somewhat weepy feeling from the intensity (physical and emotional both) of my half block journey so maybe better to take this more slowly.

Uphill was way harder and I stopped to rest twice (the cane with the fold out seat was a good idea.)

I’ll try icing my ankles and doing gentle stretches now – maybe an Advil and a tylenol – I hate the feeling of the entire arch of both feet spasming – so many separate weird little muscles. It also gets just a little bit of the “snake squeeze” feeling that is so scary (because it can get really bad)

Maybe going down just 3 houses, stopping, and coming back and doing that for the next week. It would be neat to have a small challenge like that, daily.

I need to install my pull up / toe stand bar somewhere under the deck – it doesn’t fit in any door frame upstairs but i’d like to start the combination toe-stands and pull ups again.

And maybe learn to do a push-up properly now that I have stronger toes! Ambition!

What will it be like if I can walk more? It was very strange seeing Mission as a vertical person. I felt so tall and unshelled.

I have been trying to imagine as I ride the bus, whether I could get to the bus stop, and then take the bus somewhere, and then I’d need to get across a street and probably a block or at least half a block the other direction to catch the bus home. Then another half block + up the hill again and then half a flight of stairs. Fucking yikes! I’m not there yet.

Keeping firmly in mind that I was in more or less this state in 2011 and then was felled for an entire year by bilateral achilles problems which have lasted a DECADE and which i’ve only just improved in the last 2 years to the point where I can walk flat footed and stand on my toes for a few seconds. So. Must not fuck this up ! NO MOON BOOTS!!

If you see me walking around, please know I’m struggling and having my own kind of private journey over here and just keep your comments and assumptions to yourself!!!!

An overwhelming time

Posted on by Liz

Reaching out to people for help today as Danny is in the hospital again but coming home tomorrow and I just had more to do than I could handle. Thursday I was scared enough to kind of lose my cool (I took most of the day off work, lack of sleep, and just like, upset) but Friday & today he is much improved. Tomorrow they assess him again to see if he can come home!

I also got the cheap but new wheelchair delivered for Bob who lives a few blocks away and brought it to him since his old one was falling apart and he also got hit by a car and the front casters were bent and it lost an entire (hard) tire so he was wheeling on the rims on that side. Needless to say like that he could not get far so was only managing to get to bathroom and food like once a day (though people often bring him food it’s not predictable).

So I balanced it in front of me pushing it with one foot and one hand while driving my powerchair, but Bob wasn’t there, maybe had gone across the street. I shoved the chair a block and a half away to Naomi’s house figuring I could leave it with her and check back later. We had a lovely chat with her standing on her stoop and me on the sidewalk. I miss people’s in person faces and voices and all their embodiments. We chatted so long that I figured I’d check before heading home. And Bob was there, so I went back to Naomi’s, got the chair, passed it to Bob, and we had a further chat about the messed up situation and times. He is a veteran (I have not asked of what service) and was also a CNA for 20 years. He told me about getting MRSA in his injured knee and being in long term hospital and having six surgeries on it and then being sort of yeeted out onto the sidewalk unable to walk. He is nice to talk with and loves to read history and thrillers. I took the broken wheelchair (which the nuns from St James gave him a while back, amazingly, having painted it over with white latex house paint?!) and put it across the street by the Pizza Hut figuring someone will either pick it up for metal or the city services will get it.

On the way back from that I saw, at the bus stop 1 block from my house, a guy passed out with his legs in the street and a bus bearing down hard. I was trying to get there fast enough and nearly was but was basically waving my hands wildly and pointing. The bus driver saw. He was so nice & got all his passengers to get off, and stayed there blocking the spot so that no one would pull in and run over the dude. I had imprudently gone out without my phone but stopped some nice young punks to stay with us and call 911 since the passed out guy wasn’t responsive at all and none of us wanted to pull him back onto the sidewalk tho, one guy going by on a bike did offer… Two firetrucks and a paramedic unit came out and got him up. So, OK. I am still a little bit rattled and it is just so sad and scary.

Back to my safe and cosy and clean home. I asked for help and got it today, I am going to cook a little tomorrow for Danny as he has limited things he can eat and restaurant food tends to make him sick, but, I asked my sister and brother in law to make him some pressure cooker bone broth and our friend Jamey is making some kind of chicken stew, so I hope that will keep him going and give more variety since I can’t possibly cook every day while working and doing other stuff.

Meanwhile I played more Animal Crossing, and I worked on a translation of Carmen’s poem about Covid-19.

On my toes

Posted on by Liz

I have a small but nice thing to report. For the first time in 10 years, I can stand on my toes.

The thing that has done the trick is a simple pull-up bar which is mounted in a doorway. I saw this in my friend Erica’s house & bought one for something like 25 bucks back in January. It’s mounted in the bedroom closet doorway, the only one in the house that has room since I took the doors off the closet.

So, every day at least once or twice I stand there and do 20 or 30 half-pullup, half toe stands. With my “bad” leg, I have to think very carefully about where the weight is balanced and concentrate on the ball of the foot. It’s also good to keep my stomach muscles engaged.

There’s no way I can do an actual pull up, and I certainly couldn’t stand on my toes, but with the combined support I can do a weird hybrid. Bonus side effect, it straightens out my mid and upper spine amazingly so now I’m doing this so that my back will crack.

Last night there were bins of clothes in front of the closet. I was too tired to put them away. But I kind of wondered… could I stand on my toes without holding onto anything?

Tried it first holding onto a bookshelf and was able to do it. AMAZING. Then …. balance difficult… bad leg freaking out and slightly-less-bad leg screeching in protest . . . I did it unsupported and held the position. Showed this off to Danny and then quit as I don’t want to be unable to walk at all the next day!

10 years ago I couldn’t place my feet flat on the ground! Fixing that took me a year!!!!

I’d like to also say that therabands drive me up the wall, not sure why, a combination of factors. I’ve never really mastered them. Probably I need the kind with handles (the elastic hurts my hands). The closet bar has been so much more helpful and less painful.

I’m also doing the world’s tiniest weight lifting project with 2 lb weights, straight up, then straight up with arms rotated, then a “tree hug” type of move. At least once a day. It is also helping my neck and upper spine.

Well, that’s all — it’s just a lovely feeling that I can make this small change through easy and gradual habits.

Hunkering down

Posted on by Liz

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

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

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

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

Here’s more about the DJCC:

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

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

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

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

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

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

Back on my bullshit!

Posted on by Liz

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

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

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

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

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

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

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

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

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

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

p.p.p.s. CRIPS!!