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.
I resolved to donate my week’s salary and to exhort other people all week to donate to the cause either by directly helping someone out or donating to ADAPT to support their actions and organization.
Would anyone out there like to match my donation? Email me, firstname.lastname@example.org, 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 !