Whether or not LaMDA meets criteria for sentience is interesting but not really the point. We debate whether to treat AIs like people while not treating people “like people”. What we’re doing here is separating the world into entities worthy of respect and entities to be used up and thrown away.
I would like to see this reframed so that we talk more about our relationship with technology in other terms, as comradeship, as nurturing, as companionship, as interdependence. Picture the relationship of a craftsperson with their tools, one of respect and care. There aren’t, or shouldn’t be, “tools” which we treat like shit and throw away, vs. “sentients” who we converse with as equals. There is just the world around us and what relationships we build with it. This extends to how we think about and relate to land, animals, the entire planet. We can and should see ourselves as in conversation and comradeship with our environment.
We will see efforts in coming years to elevate a few specific AIs to the status of an elite and privileged person, while the attitude we cultivate towards the lowly “tool” poisons our relationship with not just things and land and the environment, but other people. I was thinking about this during the WisCon panel on Robot Pals and AI companions where Naomi Kritzer, Marsh van Susteren, and other panelists gave examples from science fiction stories and media, and it came up again today as I read reactions to Lamoine’s interview with LaMDA.
Instead, please consider your own way of being with technology. For example, I think it’s good practice to thank Alexa and speak to it politely. I think of Kathy Sierra‘s description of user emotions towards their computers and software, of anger and frustration, a slide from a SXSWi talk of someone double flipping off their laptop. That’s very real and I get that it’s a valid emotional reaction – the point of her talk as I saw it, was that we as technologists have built things that are difficult to love and maintain companionship with. It would be so much more healthy if we created systems where our relationship to our computers and software was one of loving care, maintenance, tinkering, interdependence. We could accept our relationships to all the things in the world around us as worthy of emotional labor and attention. Just as we should treat all the people around us with respect, acknowledging their have their own life, perspective, needs, emotions, goals, and place in the world.
My car, very battered and unwashed, would laugh at me for this post! As would my messy and cluttered house.
Not being perfectly consistent in anything, I suggest that integrating this approach to an ethical framework may be something that we can do little by little. We can love our laptops intentionally, we can build lovable (and maintainable) software-building systems. The way I want to see interdependence with beloved family, I want to also try to see ways to be interdependent with our wheelchairs, buses, cars, compost, houses, neighborhoods, cities. If we don’t work on this and give it our attention, we will keep building systems where people and things and land are exploited, kind of like how Ursula Franklin describes with the idealism around the invention and mass production of sewing machines as a possible tool of liberation, gone horribly wrong in sweatshops.
What exactly does this mean? Of course I’m not sure, but I try to keep myself centered on integration and respect. Yes I’m going to still bitch about cleaning the Noisebridge hackerspace bathroom for the zillionth time, but actually, I see the domestic labor, domestic engineering, as worthy and good work in the world, to take care of others and places I inhabit, to be a good host and a good guest.
I worry when I see people around me obsessed with questions of sentience as a major point of ethical decision making. (Or even weirder and sadder, fear of future god-like AIs punishing one for the equivalent of being rude to Alexa, rather than seeing the behavior of becoming a person who behaves rudely as the problem!) I agree with Haraway that we have options to accept partial definitions and imperfect categories (say, between human, animal, machine, nature): “a cyborg world might be about lived social and bodily realities in which people are not afraid of their joint kinship with animals and machines, not afraid of permanently partial identities and contradictory standpoints.” And I hope for the home brew economy or maybe a housework economy, rather than the “homework economy”, to take root.
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.
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.)
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.
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.
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!
Looking back over this weekend it seems so quiet and low-key yet packed full of action on another level. I stayed at home after a very active week.
Tuesday was our Double Union Tea and Lightning Talks at the Mozilla community room. Over 60 people showed up. We had about 10 talks. The food was all devoured (next time I know to ask for more of it.) People all seemed super happy to be there and I had a great time MC-ing with Amelia! Wednesday I took half the day off and road tripped with Len and Rose up to Novato to see our friend Ron from Ophoenix who I love and admire. He is cool, mathy, wise, funny, good hacker, and a great activist. Ron is one of the people I co-exist with on ambient IM. I likewhen people are kind and compassionate yet can have a sharp edge; we seem to share that. Driving to Novato for me and Len is actually a road trip since neither of us drive. We hung out and just rambled nerdily all afternoon long. It was fabulous! It was also the first time I’d met Len in person and I want to go hang out with him in Santa Cruz. Especially as he described how he bakes bread all the time.
Thursday I spent an intense evening at the Pioneer Awards with Danny. Still extremely sad about Aaron; it seems surreal that he is gone. (Whatever I feel is nothing to Taren’s and to Danny’s daughter who was close to Aaron for years; but I’m still really stunned.) I developed an instant activists’ crush on Laura Poitras for being the sort of modest documentarian and doing things that are of use. It was good to hear what she had to say and see her huge grin on the screen! I had a brief but good conversation with Jamie Love and I wonder if I can kick the WEEE repair manual access idea to them. I have so much admiration for what they did with WIPO! Hugged and talked with a lot of other people there who I really love to see and don’t get to see enough.
It feels like cheating my blog to sum up the week this way. But oddly… or not… I want to dwell on my more private, homebody, intellectual life.
Friday I came down with a cold, maybe not surprising after all that running around and working on top of it. I usually don’t leave the house two days in a row even to go up the street to the corner store.
So this weekend I nursed my cold, drank a bunch of nyquil and took naps, flung kleenexes around (till saturday afternoon when i cleaned up) but also did a lot of reading. I ripped through a few more books I’m reading for the 2011 Carl Brandon Awards (the award is a little bit behind and doing 2 years simultaneously to catch up.) It is a joy to be on book award reading juries, not just to have a giant stream of books coming at me, but to have so many *new* books I can recommend to people! And I can’t wait to have some discussions and hear what the other jurors think. All of which we will be doing scarily soon.
I also read Looking for Transwonderland by Noo Saro-Wiwa and enjoyed it, though I gave it the side eye a few times I am also a fan of order with liveliness, showers, reliable electricity, people not bugging me about religion, museums, ecology, and less corruption in government so I don’t have much of a place to eye from. I did a fair amount of looking things up on Wikipedia and found a good candidate for developing a new article — on the Esie soapstone sculptures. Here is a museum for the GLAM wikipedia project! The stuff about Susanne Wenger mystical white lady priestess of Oshun also sent me on a wide eyed rampage of horror and wonderment as I fell deeply down yet another internet rathole. O M G. Talked in the language of the trees, yeah…. ok….. Then to adopt 12 local kids and deliberately raise them illiterate? I can’t even!!!!!!
Meanwhile this was going down in our communities: https://twitter.com/ashedryden/status/381465338443202560 and that’s all I want to say about that in public though the private conversations have been going on all weekend. A whole bunch of us can’t talk about it, but had to at least mention it. Ashe wrote a good post: http://ashedryden.com/blog/we-deserve-better-than-this Yes. That is the place we are coming from. You know nothing, Jon Snow. http://twitter.com/shanley also laid down the knowledge and righteous anger.
Other things, I tended my little garden of potted plants, cooked chicken-corn-pasilla pepper soup and curtido, grocery shopped, spent most of Saturday and Sunday with my sister and her 6 year old son. Laura worked on fabrics for her NASA planetary map dresses. Jack played Plants vs. Zombies 2 and other games. We played King of the Beasts with him (a great quick card/board game) and later when Laura went to a meeting Jack and I played a longer cooperative board game called Castle Panic. He was the Master Slayer (fortunately). I read Danny’s emails and twitters from the xoxo conference in Portland and thought fondly of people there.
At some point late Saturday night I went searching for a quote I was thinking of earlier in the week, by June Arnold who has been on my mind lately because The Cook and the Carpenter is so relevant to my life what with the hackerspaces and all. Realized June Arnold does not have a Wikipedia page. Oh!!!!! Like a stab in the heart. Most feminist press stuff is just missing from there. This would be a nice thing I could do, gradually and I certainly have or can scare up some decent source material. I found the quote which is from the 2nd issue of Sinister Wisdom.
I think the novel — art, the presentation of women in purity (also I would include poetry, short stories) — will lead to, or is, revolution. I’m not talking about an alternate culture at all, where we leave the politics to the men. Women’s art is politics, the means to change women’s minds. And the women’s presses are not alternate either but are the mainstream and the thrust of the revolution. And there’s no tenure in the revolution.
That panel of her, Sandy Boucher, Susan Griffin, Melanie Kay and Judith McDaniel was pretty great. I read it over again and was especially happy just holding Melanie’s thoughts about Wittig, Russ, and Arnold in my mind. I realized I have not read Flying by Kate Millet and probably should. Well, I felt happy to connect a bit with this strain of thought. I thought Amelia and others would like the art is politics quote.
Today I read halfway through Extraordinary Bodies: Figuring Physical Disabliity in American Culture and Literature by Rosemarie Garland Thomson. I got cold-emailed by Rosemarie a while back (I get awesome, awesome, emails at random, every week a few more, more than I can handle) and we finally met up at Noisebridge. I felt a weird Instant ability to partially mind meld, or, trust, or, as some people would put it boringly, I made a new friend! In like an hour hanging out we had gone pretty deep into hand waving and assuming the other person knew what we meant (and we did.) I am greatly enjoying the book. It is nicely built academic literary and cultural criticism, flows well.
Here are some bits I specially dog-eared: I did NOT know this about Aristotle. from Generation of Animals . . . “Anyone who does not take after his parents… is really in a way a monstrosity, since in these cases Nature has in a way strayed from the generic type. The first beginning of this deviation is when a female is formed instead of a male. ” Being born female is to be born disabled. “The female is as it were a deformed male…” Then on into stigma theory which we now less bludgeon-ish-ly refer to as being marked and unmarked. OK. Onwards.
Motherfucking Emerson. (I always like to think of earnest Louisa May Alcott characters falling in love over discussions of Emerson. ) Emerson goes on about conservatives and how they are “effeminated by nature, born halt and blind.” They are also like invalids. He lines up men (who are awesome and ethical citizens) opposed to children and disabled people (and women since I doubt he means “humans”) This sentence of Rosemarie’s wrapped it up nicely for me, “Emerson’s juxtaposition of an unrestricted cultural self with a muted other thwarted by physical limits exposes the problem of the body within the ideology of liberal individualism.” OK, maybe you had to be there. IT made me happy. I’m not typing out pages and pages of this and I want to press onwards. Deep into the next section I felt she was laying out out a lot of good knowledge about ways that racism and US-ian concepts of white and black (or non-white) are entangled with gender and disability. good stuff here.
Then like a full on body slam I hit the chapter “Benevolent Maternalism and the Disabled Woman in Stowe, Davis, and Phelps”. (Which god knows I will scavenge off Project Gutenberg and read this week, but I get the idea from her descriptions). Again blackness and disabilty and gender entwine. Check this out. Here is where I get my typing fingers out and smear on the arthritis knuckle cream.
As Stowe deplores slavery’s inhumane separation of families, as Davis reveals the iron mill’s callous victimization of workers, and as Phelps censures the textile industry’s abuse of mill girls, each writer highlights nondisabled heroines or narrators who prevail or even triumph. Their disabled sisters, however, stay on the narrative margins, degraded by oppressive institutions and ultimately sacrified to the social problems the novels assail. . . . While the various maternal benefactresses radiate a transcendent virtue, agency, and power, the disabled women become increasingly subjugated, despairing, and impotent.
Crushed by capitalism’s laissez-faire morality, Prue, Hagar, Deb, and Catty are icons of vulnerability who help generate a rhetoric of sympathy and scandal meant to propel readers from complacency to convictions. Despite their secondary or even minor parts in the actual narratives these disabled women fulfill major rhetorical roles by arousing the sympathetic indignation that activates benevolent maternalism. This impulse was the springboard from which white, middle class women could launch themselves into a prestigious, more influential public role that captured some of the elements of liberal selfhood. . . . . At the same time, however, these novels diminish the very figures for whom they plead by casting them outside the exclusive program of feminine liberal selfhood the narratives map. (emphasis mine)
I had to pause and let that resonate for a bit. Damn! SO TRUE. SO STILL TRUE. I mean in real life not in a novel.
Make me want to go read Arrogant Beggar by Anzia Yezierska all over again like a sort of brain-wash, just thinking what that mill girl novel is going to be like.
So, also, I spent some pleasant hours participating in CSAW Capture the Flag with Seattle Attic’s team. I would love to make it pan-feminist-hackerspace (as it more or less was with me and some others in it). It was super fun, I love puzzles, and felt stimulating! The team was 303rd out of 1300 entrants. Would do this again. I feel the impulse to go over all the puzzles to learn things.
I also fooled around putting the Hubble Deep Field onto online fabric designer stores (I am getting a swatch from Spoonflower and one from ArtofWhere, to compare) so that I can make space pillowcases for my friend Ron. (And maybe for me and everyone I know?) I did not color correct, figuring, try a swatch, if it is good enough, I don’t have to learn how. If it isn’t then it seems learnable. I would also like this nail polish as it is the best space toenail possibility I’ve seen yet!
Then I thought a little bit about RAID arrays and MPD and setting up a feminist media server and book scanner at the new hackerspace.
I thought of my friend Timmi and wished to convey all this to her and thought of writing her a giant letter but instead it is a blog post for anyone and everyone. I will write her a giant letter too at some other point.
I riffled through this feminist online library and thought about what I could do with a hopefully ethical as possible but not quite so limited by copyright law approach to documenting our history.
I had a nice conversation with Skud about Growstuff and development processes. Thought a bit about collective authorship, patterns and antipatterns. It would be neat to take Selena’s git story flash cards and make them into different orders for patterns and antipatterns like we were talking about.
I thought a bit more about sassaman but wanted to write this post instead of working on it.
Bedtime now! “There are some days when I think i’m going to die from an overdose of satisfaction.” Amelia mentioned this quote. We seem similar in temperament. I also write little quotes in the front of my notebooks! And I feel this way. Though I was unsettled, upset, in my usual level of pain (though, enbrel rush on Saturday, yay) and had a cold much of the weekend, I feel so grateful for my inner intellectual life and for all the fantastic people I have to talk with more or less any time. What amazing luck. Hypatia says it is funny that I describe mindfulness as “being smug”. I think of mindfullness as involving more meditation-like sitting still, which I’m incapable of without morphine. Some days I work, eat, clean up, hug everyone, read a little escapist fiction and go to bed. Those are good days even if I end up in tears (from pain usually). Danny and I have great conversations, I feel understood and he always has some new thought or source of interesting knowledge like a fabulous fountain of ideas. More than half of my days I think are like this last week and weekend, flitting from idea to idea, happy to be a dilettante, so happy to read quickly, and sure from past experience that my efforts will combine to make something good, a book, a group, a conversation or a chain of ideas that people remember and value, so that I feel like my time and effort doesn’t just slip away. (At best I accept and believe this; at worst I beat myself up for not being productive enough.)
I hug you all and leave you with this calming manatee. We can’t fix things quickly. What we have done and built, especially our friendships, social ties, and institutions, stand and have affected things. What we’re going to do will make change as well. It is happening, trust it and be comforted.
I’ve been helping out lately at Noisebridge during Circuit Hacking Monday. One week, some people showed up expecting the event and no one was there to run it, so I ran it for someone I knew from She’s Geeky, her friend and teenagers, and a couple of extra adults who were here from Norway and Denmark for Google I/O. I had just been pawing through the soldering supplies, organizing them a bit as I searched for what I needed for my project (messing around with a LilyPad Arduino), and had found a little bag of cheap LED light up badges shaped like teddy bears. So we used those tiny kits to make blinking badges. It was chaotic, but fun.
I talked with Mitch Altman to find out where his kits for sale were and if it was okay for me to sell them while he’s out of town, and then send him the money. I might, though, just order some kits as cheaply as I can find them, and keep them independently to avoid hassle. As I end up giving tours to lots of new people, many of them from out of town or overseas, I could do them a favor by giving them something geeky to do in the space rather than sit and check their email!
The next week things were back to normal as Miloh and Rolf were at Noisebridge to run the class. Before they showed up, a teenage volunteer helped me set up soldering stations. More and more people kept coming in so the situation got quite chaotic again as we were giving them tours of the space and trying to find room. I realized that next time I would approach things differently — clearing the whole area of people who were working, and setting up 20 or more stations ahead of time, so that we weren’t doing setup and giving tours at the same time.
During the event Miloh and Rolf really took over the teaching aspect. I was somewhat trapped with my scooter in a corner because of the number of people, the table arrangement, the many chairs and the backpacks all over the floor. So I also would like to look at making the central area of Noisebridge less cluttered with tables, chairs, and stuff for the future so that I can participate. In my corner, I again hung with some kids and the teenage volunteer, and a guy who couldn’t hear well. The kid didn’t have a computer to look at the instructions for his kit, and needed a lot of one on one help as he was maybe a bit non neurotypical. The guy who hung out with us could not hear well in a situation with background noise. I’m in the same boat — I’m in my 40s and just can’t hear in a loud, chaotic situation. The kid fixed his Mintyboost and then made a tv-b-gone. The other guy made a blinky badge then was hooked and got one of those big name LED badges, I think. He appreciated the How to Solder comic book print out that I happened to have on me because he missed all of Miloh and Rolf’s explanations. I thought it was interesting that, marked out as somewhat different and disabled, I ended up doing more one on one work with people who had particular access needs.
Our volunteer also was super helpful in that capacity and seemed unusually alert to access issues, like that chairs or cables were in the way of my scooter or that it might be hard for me to get up to get supplies on high shelves. After the event when his dad came to pick him up I saw that his dad had one arm and walked with a cane. So growing up with a parent who has some mobility issues he might be more tuned in than others usually are.
I thought both those things were interesting! And figured it is a pretty good role for me at CHM. If you have particular access needs or are going to bring a bunch of 10 year olds to Circuit Hacking Monday (Mondays at 7:30pm) then feel free to email me with questions and see if I can be there & be helpful: firstname.lastname@example.org.
Basic supplies are running low. We have lots of soldering irons, including a bunch that I think Jake, Lilia, and MC Hawking won in a contest, but they’ve seen very heavy use over the last couple of years. So there are a lot of kind of crappy soldering irons and a few decent ones. We might be able to clean them or swap the tips cheaply. We have lots of snippers and wirestrippers. We need solder, weighted holders with alligator clips and lenses, more of those weighted bases with copper wool for cleaning soldering iron tips, and more de-soldering braid. Plus it would be so nice to have a supply of many kinds of coin cell batteries. After I talked with Miloh about that he shared a giant complicated spreadsheet with me. I haven’t read through it yet! But it would be great to get particular donations for restocking our electronics supplies.
We have shelves and shelves of hardware junk, in bins, and a wall of tiny little parts in tiny drawers meticulously labelled!
Yesterday I spent some nice time in the afternoon doing a Dice Kit with my son. We couldn’t find any decent epoxy or glue, so went to the fabric store on the corner, but ended up getting a big tube of contact cement from the dollar store. I gave a lot of tours and hung out with my friend who came by to fix her headphone wires. We’re both going to help TA at Black Girls Code in San Francisco. She ended up also using the wood shop for another project – modifying wooden artists’ brush handles to make those long tapered sticks so useful for holding up long hair and especially dreadlocks. Claudia aka Geekgirl showed up too and told me about how she is going to Rwanda in September and has a job there teaching IT and computer programming to middle school girls. Nifty! Meanwhile, my son played with MC Hawking and read comic books in the library after he was done with the Dice Kit. Along the way he learned to figure out the values of resistors from the color code chart (and learned it is not hard to just memorize the numbers.) We looked at my LilyPad and he got to the point of comfort with the code to make a scale go up and down again and modify the time of the notes. I gave the world’s worst and briefest explanation of what a function is and what it means to pass it variables, but he caught on with no effort. I’m very spoiled as a teacher when I set out teach him anything! He gets the idea too quickly!
Anyway, I sat up far too long that afternoon, and sadly had to leave before Replicator Wednesday kicked off. It has been nice going out into the world a bit more, this last month, more than just for the grocery store and physical therapy.
One last note: this is what happens if you leave your bike blocking the elevator at Noisebridge!!! It gets put into the E-WASTE bin!
The Brennan Center just published a huge report, Voting Law Changes in 2012. The description of the report says that these laws will affect disabled people as well as young, minority, and low-income voters. Here is the lowdown on how these laws may affect people with disabilities.
Seven states have changed the law on voter registration and on absentee ballots to require government-issued photo ID. If you’re disabled, and you don’t have a current state or federal government issued photo ID, you may need to do quite a lot of planning to get one. Transportation, and the process itself of waiting in lines and going to various offices may be a barrier for many people.
If you have an elderly relative whose ID may be expired or who may not have a photo ID, and you’re in one of these states, you might want to help them prepare to vote. Let them know the law has changed and ask them to check their ID expiration dates now!
Unexpired driver’s license, non-driver’s ID issued by a motor vehicle department, U.S. passport, or U.S. military photo ID will be accepted by all seven states: Alabama, Kansas, Rhode Island, South Carolina, Tennessee, Texas, and Wisconsin.
Student IDs: Alabama, Kansas, and Rhode Island.
U.S. naturalization documents bearing a photo: Alabama, Rhode Island, Tennessee, Texas, and Wisconsin.
Tribal ID card with a photo: Alabama and Wisconsin.
Concealed handgun licenses: Kansas and Texas. (Okay….)
Any old ID with your name and photo on it: Rhode Island. Woo hoo, print your own!
Here’s an excerpt from the Voting Law Changes in 2012 report that describes the situation in detail:
In general, the photo ID bills that were introduced this session are more restrictive than those in prior sessions, including fewer forms of acceptable IDs, fewer exemptions, or fewer alternative mechanisms for eligible voters without the specified IDs to vote.
Those laws that have passed this session vary in several respects, including: (1) the types of photo ID that voters are permitted to show for voting; (2) whether the requirement to provide ID applies only to in-person voters or to those who vote by mail as well; (3) whether there are any exemptions from the requirement to provide ID; and, most importantly, (4) whether there is an alternative way for a voter who does not have an accepted form of photo ID to cast a ballot that counts. Detailed descriptions of each bill are included in the appendix to this report.
The types of ID permitted
With the exception of Rhode Island, each of the states that passed voter ID bills require voters to show government-issued photo IDs, though the list of acceptable IDs differs from state to state. All seven states accept an unexpired driver’s license, non-driver’s ID issued by a motor vehicle department, U.S. passport, or U.S. military photo ID. All states except for Kansas and South Carolina also accept U.S. naturalization documents bearing a photo. Alabama, Rhode Island, and Tennessee broadly accept any photo ID issued by state and federal governments, though Tennessee expressly excludes student IDs from consideration. Only Alabama, Kansas, and Rhode Island accept student photo IDs issued by state institutions of higher education. Wisconsin purports to accept certain state-issued student IDs, but the state’s new law imposes criteria for such IDs that few if any state schools’ IDs meet. Kansas and Texas expressly allow concealed handgun licenses, and Alabama, Rhode Island and Tennessee accept such IDs as well. Only Alabama and Wisconsin accept a tribal ID card with a photo. Rhode Island is the only state that accepts non-governmental photo IDs for voting; indeed, any current ID with a voter’s name and photograph suffices.
Who must show photo ID
All seven states require individuals appearing to vote in person at a polling place to show photo ID. Only Alabama and Kansas require all persons who vote absentee to submit a copy of their photo IDs with their mail-in ballots. Those states are now the first two states in the nation ever to require photo ID with absentee ballots. Wisconsin requires permanent absentee voters to submit a copy of their photo IDs, but only the first time they vote absentee. As a practical matter, all absentee voters in Wisconsin will have to provide a copy of their photo IDs when the law first goes into full effect in 2012.
Several states exclude certain categories of voters from the requirement to show photo ID for voting. Alabama exempts individuals who are entitled to vote absentee under federal laws protecting certain military and overseas voters and certain elderly and disabled voters. Wisconsin also exempts military and overseas voters, as well as voters designated as “confidential,” such as police officers or domestic violence victims. It does not exempt elderly or disabled voters other than those indefinitely confined to certain care facilities. Tennessee exempts voters who are either hospitalized or in nursing homes. Texas exempts certain voters with disabilities who can produce a statement that they have been determined to be disabled by specified government agencies and do not have the required ID. And Kansas exempts only permanently disabled and absent military voters from its law, but allows persons over sixty-five to show expired photo IDs.
I’m not in any of those states but thought I’d help get the word out.
This week I noticed a great post by lightgetsin on asking for accessibiilty improvements in which she records the results of asking a couple of dozen sites to fix inaccessible content.
It was a familiar story to me, very similar to what happens when I ask for accessibility accommodations off the web. Sometimes no response at all; sometimes a few reasons why the person or company can’t be bothered; very often, outright hostility, fear, and defensiveness.
Lightgetsin’s post became very popular over the past few days and the responses were quite interesting.
The reactions on Hacker News, Asking for accessibility gets you nothing but grief, were often faily but in complicated ways, worth reading and sometimes worth arguing with. You can see from many of the responses that it is the norm for developers to think that it’s not worth it to make software or sites accessible. Their reasons vary. There are also excellent and positive comments in the Hacker News thread.
I’m glad that lightgetsin’s post has sparked such widely ranging discussion.
It’s always hilarious to me when people ask me for help or advice with web accessibility or want me to be on web accessibility panels at conferences. I’m a wheelchair + crutches user; I don’t surf the web with my legs! And while I want to be a good ally, frankly, I am not always, and don’t have particularly special knowledge about web accessibility. You could boil down what I know into “use alt tags on images”, “don’t autoplay stuff”, “transcribe videos”, “make the text in hyperlinks meaningful”. So I try to refer people to actual experts in the field, when I get asked.
I’m spending the morning today checking my blogs with WAVE, a tool to show errors that would break a web site reading experience for users of screen readers. I’m also going to install the WAVE Firefox toolbar, to help remind me to check my blog posts for obvious accessibility errors. I’m looking at this huge list of resources, hoping to learn a bit more: Web Design References: Accessibility.
What guides or tools would you recommend for web developers, bloggers, or software developers, to educate themselves about accessibility?
Thursday, Dec. 16th, I’m going to be on a radio show on Feminism Online, hosted by Ananda Leeke as part of her month long Digital Sisterhood project. The show will air on Dec. 16, Digital Sisterhood Radio, from 9:00 pm EST to 10:00 pm EST on Talkshoe.com: http://www.talkshoe.com/tc/42015.
Eight amazing fierce feminist panelists have confirmed their participation. They include:
8) Brandann Ouyang Dan, Native American blogger, invisibly disabled, U.S. Navy Veteran, social justice activist, and contributing writer for FWD, Feminist with Disabilities – http://disabledfeminists.com.
While I have plenty to say about my minor difficulties as a disabled person with parking spaces, being stepped on in crowds, and dehumanized at airports, I’d like to mention a super nice interaction I had with a woman at the grocery store the other day. I had stopped off on my way to work and walked from my car into Trader Joe’s with two canes. Someone else was using the motorized scooter, so I sat on a ledge and waited. My options were:
* wait for the scooter user to be done
* just leave and go to work without lunch
* walk to the back of the store to get my salad and fruit and back and wait in line standing up
* go back to my car and get out my wheelchair and wheel through the store to shop
I am lucky to have that variety of options, obviously!
Walking means pain in my knees and back and leg, and exhaustion, but getting out the wheelchair is also tiring as well as being hard on my hands which lately are in a lot of pain too. So I figured I’d sit for a minute or two and if the scooter user was taking too much time, I’d leave and go to work. Both walking the length of the store and getting out the chair once I was already in the store weren’t worth it. “It” being the price of arriving at work at 9am already wishing to go back home to bed and take painkiller and cry.
As I sat there a nearby checkout clerk, a lady maybe 60 years old, came over to ask me if I was waiting for the scooter. I said I was and didn’t mind waiting and was fine. But she offered to get me the groceries I wanted. “You can just tell me a list, or I can write it down.” The store wasn’t busy, and it would be no trouble for her to do. I was incredulous. While all that was true, her fundamental niceness in bothering to notice I was in (minor) difficulty that she could easily alleviate — well it amazed me. That almost never happens, even with friends, coworkers, and acquaintances.
I’m not shy about asking for help, though I don’t much like doing it. The thing is, I already have to ask for help enough. And I enjoy being able to do things. I’ve had enough moments of having to ration out my requests for help into asking for water, food, and help to get to the bathroom. Now I’m up and around and don’t have to do that. But… If it isn’t crucial, I don’t want to ask. I would rather be a little frustrated and continue to feel independent. Both because I don’t want to try the patience of able bodied people around me, as if they are a bank or participants in a zero-sum game, and I shouldn’t *use them up*. Even if I won’t need anything major from a clerk in the grocery store, a stranger, or a friend, I think of them as a resource with finite patience and attention not only for me but for whoever the next person who asks for help might be. The other component is certainly my pride. Am I going to ask a nearby stranger or a barista to bring my coffee to a cafe table when I’m on two crutches and can’t carry it? That depends on a complicated internal equation of pain, ability, and pride. I can usually manage it okay on one cane or none, but sometimes “can do it” is tangled with “will hurt, unnecessarily”. I understand on many levels that “independence” is a lie for all of us – for all people. None of us are independent. Dependence, and help, and asking; everyone has to do that, whatever the style of it and whether it is backed with money (as it is every time you pay someone to do something for you.) But I fight it hard on little things sometimes. It’s complicated and weird and I process it internally, a lot. Even when I ask for help, I have a hard time accepting the help. I prickle up like a cactus. I don’t want to be in any situational pattern where someone has power over me.
With that sort of thinking as my background, I said yes with some embarrassment and diffidence to the nice Trader Joe’s clerk. I was actually kind of stunned and going “Are you sure? That’s okay? Because it’s okay really.” She was determined to help out and not gross or weird about it. I asked her for a salad and some packets of dried seaweed. If it had been a whole grocery store list, I just wouldn’t have been able to ask it of her even with her kind offer.
She got me my lunch, rang it all up, and brought the bag out to the car for me. Outside she said that her brother had polio so she understood it might be hard to walk across the store. She looked at my wheelchair there in the front seat and asked if I was going to work. She assumed I had a job… she didn’t act like it was weird I had a car. All very rare. She must be a good ally to her brother.
Disability aside, people are usually a bit extra judgey because I’m a little scruffy and have purple hair so they assume I am kind of a privileged brat (and they’re right on that count) and/or some kind of drug addict teenager (I’m 41, and not, but even if I were, would still be disabled and in need of help sometimes) and thus not worthy or deserving of help.
I drove to work actually crying… I know, first world moments and all… A bit ridiculous.
I was driving away wishing that as that lady in the Trader Joe’s gets older that other people are as considerate of her in small unnecessary moments as of course I also hope they are in the larger and necessary ones in her life. Since I have no way to guarantee that, I guess I’ll always try to get into her line at the store and say hello, will look at her nametag, and will figure out how to contact the store management to say an anonymous thank you.
Thank you all for your contributions! All through October, they buoyed me up and gave me food for thought. I felt intense pride to be part of this very loosely knit online community of thinkers and writers.
Wheelchair Dancer contributed two posts. In Becoming Disabled On the Job she writes about how even in a supportive workplace there were many obstacles to overcome as her physical capabilities changed over several years.
Ultimately, I was successful at my job; I wrote my heart out, presented, won awards, grants, and funding; I got myself published. Technically, however, I didn’t get my work done on schedule; in fact, it took me approximately two extra years to approximate a body of work like the ones that my peers had on their resumes. I felt like that broken and imposter racehorse, uselessly gimping around behind its pure blood, beautiful, swift sisters.
Her other post, Disability at Work, focuses on her current job as a dancer, where she is not the only person with a disability! “You know that disability is an important factor in your work environment when . . . ” Ha! I love it! I’m printing out her 10 reasons why list and putting it up at my office!
Sophia from ‘sprokenword has an otherwise excellent post which does contain some hatred expressed towards people riding airport motor transport carts who are fat. If you can read around that or bracket it, read on because the post explores some other important issues. In Disability Employment Awareness Month, Sophia describes her job working for a non-profit open source software company while dealing with gait problems, chronic pain, trouble standing, and difficulty walking. Her situation requires quite a lot of travel. I enjoyed this post and have a lot of respect for the difficulties of travel and Sophia’s determination to do it. Sophia’s post and Wheelchair Dancer’s first post spoke to many of the issues that people with disabilities and chronic pain face in professional careers.
Alison Bergblom Johnson, from the blog Writing Mental Illness, posted about poetry as work. Anne Sexton: Patient or Poet. Anne Sexton was a brilliant and hard working poet. She won many awards, including the Pulitzer Prize. But in the psychiatric professions she is a patient and her work is considered as pathology – as evidence of her illness.
Deborah Kaplan wants to recognize the ways that her job is awesome in working while disabled: it’s really just fine. “I could do most of those infamous “activities of daily living” without help if I had too (since I don’t think that Congress defines “open-source coding and checking my feeds” as an activity of daily living). But without adaptive technology, I would not have been able to hold a job for the last 10 years, full stop.” Her co-workers and employers are supportive. She has some complicated stuff to say about the tradeoff between working through pain and difficulty vs. taking time off and trying to heal and avoid stress. In all that complexity, though, her day to day experience of work is “pretty damn good”.
Tlönista’s post Work/Ability writees about some of the negative aspects of her experiences working and being a mentally ill person. She wonders how much longer she can go on. “Don’t think about the long term, don’t think about the future, treat your life like a sub-prime loan. For now I am a “good” mentally ill person. Not a menace, not a burden. I am functional. I’m so tired.”
Sashafeather’s post, “Disability and Work: What I do” centers on Ursula K. Le Guin’s science fiction book about an anarchist planet, The Dispossessed, where the word for work is the same as the word for play. Sashafeather describes work/play as “what occupies a person’s time, and what one does with the people in one’s community”. She does emotional work, self care and pain management, volunteer work for the WisCon feminist science fiction convention, and disability/anti-oppression activism. She moderates several online communities and does creative work in media fandom.
Her post made me think about self-care and pain management as an important part of community work. It’s something I have to remind myself of: If I don’t deal with my physical pain levels, I will be less useful to the people around me and my community. You might think the motivation of “not being in so much pain” would be enough. Often it’s not.
And she moves into very interesting territory in writing about work, disability, and feminism:
I have personally benefitted from the feminist idea of work being a socially constructed idea, and “women’s work” such as housework, childcare, and care of the elderly and ill being often unpaid or underpaid and devalued by society. The reason women are paid less than men is because women’s work is undervalued. Women often provide emotional support for others, they build friendships, they build communities, they build homes. All of this takes time and effort.
The categories of women and disabled people intersect hugely. The work of disabled people is also devalued, and disabled people face huge barriers such as pain, exhaustion, mobility and cognitive impairments, communication differences, discrimination in the work place and the wider world, and a lack of basic access to buildings, services, and transportation.
Eva from The Deal with Disability wrote and posted a video of herself at her dogwalking job. Sometimes accessibility is more than meets the eye. She posts flyers for her business at veterinarians’ offices and was showing how though she found out she couldn’t get into the office there, the staff’s attitude was polite and helpful. Eva goes on to point out factors other than steps or ramps that affect accessibility.
The spaces in my résumé by codeman38 talks about some of the practical difficulties in getting a job by traditional means. Interviews, transport, and phone calls are not completely impossible for him as an autistic person but they are definitely obstacles. He finds jobs through friends and family.
Tera from Sweet Perdition writes about her job at a local game store: I am Lord Voldemort. She works for store credit at a job that her college professors would consider below her capacity – but she loves her work and their appreciation of her.
Sometimes you think about getting a proper job, one that pays you money or, at the very least, requires you to leave the house, but you don’t want one. You real
ize that you don’t really want a lot of things that you’ve grown up hearing independent adults must have . . . But all this guilt is just society’s poison coursing through your brain; it isn’t you. The things you want–really want, not just think you should want in order to be a real person–are not the things your culture wants for you. Popular culture doesn’t have many models for the kind of person you are.
I posted on BlogHer.com on Working Women With Disabilities. I was feeling exhausted and disheartened, and wanted to see other people’s thoughts on working and being disabled. My own thoughts on the subject are going to take me a while to put together. When I post about my personal experiences with losing jobs, struggling to get SSI, working part time, passing as able, going back to school, and access issues on the job now that I’m working again. I’ll link to it from the comments on this post.
Wheelie Catholic posted many times in October with Disability Awareness Month in mind. Her posts are great!
[ETA: warning on fat hatred on a link.] [ETA again: I phrased that badly and i think misinterpreted sophia’s words to be about scooter users. By carts she meant people who are riding the electric carts that airport employees drive around to pick people up. See comments on this post for my thoughts. – Liz 10/28/09]
Thank you all again for clueing me in to your amazing writing. And thanks for reading!
Please stay tuned to FWD/Forward for the next Disability Blog Carnival call for contributions for Carnival #60!
This weekend I went right from the Blogalicious conference in Atlanta to the end of a march and start of a rally that kicked off a week of activism by ADAPT.
Their goals are, free people from being incarcerated in nursing homes, and kept in there against their will. They back the Money Follows the Person program, which means a person’s benefits are under their control rather than under the control of doctors, social workers, and assisted living facilities (who are a powerful medical-industrial complex much like the prison-industrial complex: powerful lobbyists with a lot of money at stake.) Right now ADAPT also supports the Community Choice Act, a bill which you can see and follow directly with OpenCongress.org.
I hopped out of a taxi with two backpacks hanging off the back of my wheelchair, tired enough to cry but feeling jet setty, determined and super excited, as if going to the crip activist prom. As I rolled up an exhausting hill to the Martin Luther King historic site and rose garden. Hundreds and hundreds of disabled people and others were there. There were some songs and short speeches. There seemed to be three or four main organizer dudes, 70s looking older white guys. I gradually realized everyone was in groups based on the color of their tshirts.
I have not been involved on any level other than donating money to ADAPT and though I write about disability online a lot I don’t get to hang out with anyone really and I miss that enormously and need some solidarity. So I was so grateful just to be there for a while with everyone. I wanted to stay and support the goals of the organization to get government officials to change policies, get people out of forced institutional living, and embody our political power with direct action.
But I’m also going to frankly tell the story of my afternoon and my thoughts.
First, here is an ADAPT logo and a link to their donation page.
Here’s a short speech by Lois who says “Free our brothers and sisters, free our people.”
I enjoyed the small bits of chanting we did. How do you spell power? A-D-A-P-T! However I have been in enough rallies in life that I never want to yell “The People united will never be defeated” again. Did it anyway in the heat of the moment. But I draw the line at “Hey Hey Ho Ho.” A person has to have some boundaries. Hah!
Andrew Jones speaks about getting out of an institution with the MFP program which has now been denied funding. I missed videoing the second bit of his talk, which was fantastic (my camera ran out of batteries just then.)
Later that afternoon I went to shake Andrew’s hand and tell him I’d upload the video of part of his speech, and he raffishly explained to me that I was a rather attractive and curvaceous young lady. Thanks, Andrew, but LOL that was some quick work, how about making friends first, also, actually I am 40 and prideful of my mature charms and middle aged wisdom. You are certainly silver tongued though and should get on email. It would work for you.
Thank you ASL interpreters. Y’all worked so hard. And thanks ADAPT for structuring that constant side by side translation.
So then, there was a sort of extra staged bit which I had mixed feelings about, keep in mind I am a total outsider to ADAPT so take it all with a grain of salt. Delores Bates and Kathy and Bodie came up to the front of the rally and did not speak but the main organizer guy told Delores’ story of being in an institution for “seizures” for the last 43 years. She just got out, I guess with ADAPT’s help, this September, to live in her own place. IT was her 57th birthday on the day of the rally and they presented her with a birthday cake and a giant card with lots of signatures. We all sang her Happy Birthday. It was her first birthday on the outside in 43 years.
So, okay, I cried like a baby, but I also was like “So, fucking give her a piece of her own cake then? Also, what she have to say about it if anything?” And felt it was a bit stagey and poster-childy. I talked with Delores a bit afterwards and asked her if I could take a picture, she smiled and nodded and I showed her the photos in my camera for a bit. I wished she could talk with me. Thank you Delores for contributing your story and your birthday moment to ADAPT and all of us in the crowd. Congratulations on getting out.
I wondered what happened next and I imagined again her having email and showing her Eva’s The Deal with Disability blog entries so she could totally crack up laughing. And that she could have a Facebook page and people could donate directly to her if they wanted and if they cried while singing her Happy Birthday rather than it being sort of showcase for ADAPT, though I also felt like ADAPT probably does right by her and she might be happy to donate that publicity about her life for the good of others. Basically I had my little social media empowerment fantasies and started making real life plots to go to nursing homes in my area and implement my idea to get them online with wireless and take it from there. More about this later on Hack Ability.
Here are some scenes of the people and the crowd.
I saw my friend Bethany and was very excited! We were on a panel together at the Sex:Tech conference. Then wandering around for a while I introduced myself to some women named Naomi and Joanne. They were very persuasive trying to get me to stay. I thought about calling work and begging for time off without pay, and trying to find child care, and seeing if I could change my plane ticket instead of leaving that night. Would it be possible? I considered just “accidentally” missing my plane and finding a place to stay overnight. But I’d have to accomplish all that in something like 2 hours and I didn’t want to let my employers down or my family. If only I had planned to stay.
Then people took off up the big ramp out of the park and up another hill to Park Manor nursing home, right next to the Rose Garden. I asked a guy to hold my hand and pull me up the hill. (Thanks!) We all marched and rolled past and waved. The Older People for Community Choice stayed outside the windows with a big banner, waving, till the end of the parade.
Now here is the “Stay on the Sidewalk” bit, where I rant at length!
As I rolled down hill at the tail end of the march I made friends with a guy named Tali and soon we were deep in discussion about disability rights politics. Over the next few blocks we kept getting yelled at to get into single file. The march went on and on and Tali started to give me a lift – I hung onto the side of his power chair so he could pull me (and my giant backpack) up the hills (which no one who isn’t in a manual chair would even think of as “hills”). We were all in the middle of the right lane of the road. Basically I don’t react well to senseless orders and I’m proud of my capability to land in a strange city and get around. Also, i know how to cross the street but at every intersection another person usually one on 2 legs was screaming at me through a megaphone to keep up. This one older lady behind us in a power chair was very, very upset that Tali and I were not following the rules. I was half a lane away from the part of the street that was open to traffic and at no time was in any danger. What I think happened was a vicious cycle of this lady’s instant judgement of me as a spoiled bratty child of privilege who needed to be controlled. And this kicked in all her officiousness, which in turn pushed my buttons big time so I refused to do what she said. As disabled people (or people in general) we are not served well by doing what we’re told without using our own judgement. By the end of the march I was not only so mad I could spit, I was ready to go get hit by a car just out of spite. If not rolling up huge, horrible hills, being yelled at every inch while I was deep in talk with Tali, I would have liked to have a good heart to heart talk with that lady about authority, privilege, hierarchies, rules, race, disability, internalized oppression, and so on, and I mean that sincerely. Instead I lost my temper and just kept yelling No, leave me alone. The worst moment was when she decided I was too far back at the end of the line of the parade and she started yelling for someone to come and push me. “We’ve got a manual wheelchair here who needs a pusher” And that sent me over the edge of rage to be referred to like that. I also fight very hard to be independent in big and small ways. So it pisses me off that someone else thinks they get to decide when I need “help” which in this case would not have been help. Tali and I were cussing everyone out loudly and yelling No sorry don’t need help we’re anarchists. I also had some commentary from walking organizers in orange shirts about “how well I was doing”… thanks but shut up, that was a patronizing and unnecessary thing to say.
The thing is, i’ve been an activist and organizer for years and I know how to organize a march or parade, I know you have to get permits for it and work with the city and the police, I know how to block traffic as safely as possible, and I’ve been to many rallies where there are guys barking orders through megaphones at people who don’t need to be ordered around at that moment, because they panic a little at being responsible and in a position of authority, and so they have to go around displaying it, because they’re worried and need the feedback and reassurance that their authority is *working*. I would like to tell those guys to take a chill pill. Unless it is an actual crisis situation, you are not helping, you are just training people not to think for themselves, and causing a reaction of confusion and resentment. And in an actual crisis situation, it may very well NOT BE YOU with the megaphone and orange vest who keeps a cool head and exhibits leadership. To be overly generous, there is the opposite kind of asshole in rallies with a black bandana who is just there to fuck shit up and set a newspaper vending machine on fire and they can also kiss my ass. And I’m not that kind of asshole, i’m the *journalist kind of asshole* and also one of those rogue computer people. In any situation I look to whoever is sane and making sense and being effective. If the most sensible person there is me, then I lead. In a situation where I have information that shows that it is best for another person to lead and coordinate and there are rules that make sense, then it is best for me to go with that. That, for people fighting for “empowerment” should not be hard to understand.
Here’s how I felt about it at the time and Tali too….
Tali especially since he was put into a different “color group” as Bethany who he had specifically come there to meet as his one friend at the march and then a bunch of organizers wouldn’t “let” him sit with her since he had the wrong color tshirt on or something. Um. !!?? What possible purpose could this serve. We were told over and over again that people were trying to PROTECT US. What’s wrong with that statement should be a bit obvious.
Now if it is directly going to contribute to saving someone’s live or helping us not be harmed in some way I can shut up about my personal dislike of orders and my special snowflake self and rights, and be dutiful for common good, but this was NOT THAT MOMENT.
Near the end of the march back I ran into my blog friend PhilosopherCrip,
I adore him!
We spoke super briefly and he sized up my state of mind and I think, in a post later, actually partly answered it by explaining ADAPT’s organizational philosophy and how it goes into military organization mode during Actions.
Now, when folks refer to ADAPT as the “militant” wing of the disability rights movement, they are more accurate than they may realize. To some degree, ADAPT’s organizational structure is a representative democracy as actions are being deliberated and planned. However, when the wheelchair tire rubber meets the road, we turn into a highly authoritarian, quasi-militaristic structure, complete with chain of command and an expectation to follow orders exactly. This has all been a matter of reflection for me (particularly how trust relationships operate within a direct action activism structure), some of which will hopefully find its way into a future blog entry.
I appreciate that explanation very much and it goes a fairly long way to quench my irritation. However I have a meta irritation which is that a lot of the people at the rally might not have the luxury of being irritated or going off like I could to do their own thing. There was not good information passed out to people. A lot of people don’t have independent means as far as money. The pace of activities was brutally fast. I was increaasingly conscious of my own extreme privilege relative to others there. I could at any point just call a taxi and go wherever I damn pleased. So I could criticize the leadership all I wanted. That is not a good feeling, it’s not right or fair, and to me is a sign something is not right in a power structure. I was like, damn, I’m even more happy for my job because it means i’m not subject to being grateful to these officious do gooders to boss me around while they’re “helping me” “for my own protection”.
When I’m getting arrested or facing some pepper spray then I appreciate organization but being “protected” from the simple act of wheeling down the street next to my friend … no thanks.
As an amateur leader myself in some situations I would advise other “organizers” to cope with loose cannons like me by valuing their capabilities and not trying too hard to rule over them in the small stuff. It backfires. Just let them do their thing and then when the time is ripe, co-opt them. (LOL AGAIN) (I say this mostly to make Joe/PhilosopherCrip crack up laughing)
And as I bitched about this to my friends a lot of them said “Yeah, that’s why I don’t really hang with ADAPT, that stuff turns me off.”
That is too bad and it’s feedback that should not be dismissed.
On another level of meta I would question whether the organization has a fair amount of military veterans in it who perpetuate their drill sergeant style and somewhat out of date organizational tactics. We should be empowering each other with information and two way access to public discourse in ALL WAYS so that we can act collectively in a swarm-like fashion. What y’all need is flash mobs, not paramilitary squads and cells.
I really do respect all that ADAPT has achieved and does!!!!
But check what you’re doing and listen up. Many aspects of the rally and march reminded me of my dealings in the Houston Astrodome during Katrina with the Red Cross officials vs. the rogue anarchist computer people. And I want to tell you that what on some level what got people the hell out of that refugee camp was information and connectivity: phones and email, myspace and facebook and search engines and the web. Not Professional Organizers and charity and hierarchical leadership that hugs information and power tight to its chest. A flow of information means that people can make decisions and act together. You all need some wing of your organization that works to those ends too.
Anyway, at the hotel, I actually used my privilege to take our asses to the hotel bar and have a much needed beer and sandwich in the 20 minutes before I had to catch a taxi and plane out of town. The bar waitress was SO nice and saw I was looking for a power outlet to plug in my laptop, and she brought me my sandwich to go so I could eat some of it and take the rest. She was completely unfazed by our wheelchairs. Omni Hotel, you rock. Bethany and Sara and Tali it was the highlight of my trip to get to hang out with you.
So I flew off literally sobbing with my desire to stay there and be in the week’s actions despite my rant about power structures and being yelled at, so ready to go for it.
Would anyone out there like to match my donation? Email me, email@example.com, or comment here.
The next day I woke up at 5am and began following what was happening in Atlanta. All day throughout work I could not stop thinking of all of y’all in Atlanta, cheering you on over Twitter, I worked to post and tag all my photos and videos as fast as possible as the only contribution I could make remotely.
What you all achieved and are doing today is so beautiful. Congratulations on getting into the Governor’s office, HUD and HHS and making top officials agree to meet right then and there and begin negotiations. So smart and so effective. You got a response and got the politicians to listen and take our power seriously. YEAH. (And direct action and the threat of an endless sit in or hundreds of us dragged out in handcuffs, ie, PR disaster, IS WHAT IT TAKES. RIGHT ON.) Good job with the talk of timelines and scheduling a series of committee meetings. Please, report on this in as much detail as you can on the net. And to report on it ASAP so we know what’s going down. A lot of us are watching and putting our trust in you right now to represent our interests.
Thanks for listening. Also, thanks to Nick Dupree for letting me know ab
out the rally and actions in the first place (last week on his blog). Now, anyone who read this who can afford it go and donate. Consider trying to get your employers or family or friends to donate as well. And, go read up on the other posts in Nick Dupree’s ADAPT Blogswarm !