randomling | how do you do this again?

Making a rare public post. And a rare post, come tot hat.

Like most everyone I've seen post anything on the internet today, I am shocked, I am angry, I am horrified and terrified. I think we need community more than ever. I sure as hell do.

kaberett is holding a very timely love meme. My thread is here, or will be when it's unscreened. I'll try to keep up, but feel free to link me to yours in the comments.

Given that I'm not the only person who's wondering how the hell to make a difference on low-to-no-spoons in this increasingly shitty climate, I've been wondering how to organise that. Because of spoon and brain reasons (I'm not a very steady person, I tend to come and go with interests and I sort of need advance permission to burn out and disappear for large chunks of time) I'd need a co-mod or three and probably some discussion about how to set it up and what we might want to do. I'm thinking of a name like spoonless_activists or something?

The problem with being disabled is we often don't have the spare resources to spend on the stuff that might change the world. But maybe if we organise we could do... something? Even if it becomes a place to signal-boost petitions, fundraisers and community events and nothing more, that's a start. And maybe we can find something to do with it.

What do you think, people? Anyone want to join this effort or have any ideas?

Flat | Top-Level Comments Only

From:

lannamichaels

What do you think, people? Anyone want to join this effort or have any ideas?

Would love to join the effort, but alas, don't have ideas

From:

randomling

Wanting to join is great, though! Thank you!

I think I'm gonna go ahead and make this community shortly, I'll advertise it on my journal and anywhere else I can think of!

From:

syntaxofthings

<3

I have more thoughts that at some point I'll get to you in private.

From:

randomling

♥ Looking forward to it, though I know you have stuff going on right now, so no rush.

From:

the_rck

I know I want something I can do, but I've been at a loss as to what. I have trouble leaving the house (agoraphobia). I can't make phone calls because they wreck me. I can't drive, and I can't walk very far at all. I have very little money to give, and what I have I tend to aim at the local food bank or at things for my daughter's school.

From:

rmc28

I think there have got to be things you can do by online communication alone, as and when you can, and I am personally very interested in finding/building systems that allow people to do so.

I'm thinking:
* helping moderate a community
* organising a community to-do list, and a resource list
* researching existing organisations and models that work well for distributed online contributers (e.g. DW contributers?)
* working up to the kind of things mentioned by

davidgillon: research and analysis and written communications

I sort of want a system where people can come and see a list of things they can do, with an estimate of task size, and pick something up and do it. But one of the things to do is keeping that list / estimate up to date, and breaking down tasks into small chunks that can be done ...

From:

green_knight

That sounds like a call for a project manager and a good online project management system...

(I, too, am looking for things to do, and a distributed system where I could work as much as I have time/spoons for without letting people down would be ideal.)

From:

randomling

Yeah - I have no idea where to find a good project management system, and I'm not sure I have the spoons to do all the project management for an effort like this, but if we could find a way to distribute the project management too it might work.

From:

randomling

Yes, this sounds like exactly the kind of thing I wanted to to put together - I think the trick will probably be critical mass of people (so we have enough people/resources to cover the basic needs of keeping the community running even if people are sick or busy or otherwise need to sit out for a bit).

So - yeah, figuring out the list itself and how to maintain it and so on is part of the task, I guess!

The community is incoming. :D

From:

cesy

If you have time to spend online and are happy to either write emails to strangers or learn/do coding, there will be stuff. I have a recent example - our local Refugees Welcome group desperately needed a few people to help answer emails and manage our facebook and twitter. You don't actually need to be in our location for that, just learn the stock answers and email someone for help when you hit a complex one. We've currently got more volunteers than I have time to reply to, but there will be others like that. If you or one of the other commenters here prods me in a few days when I'll have holiday and spare time to think, I'll probably be able to come up with existing organisations to help you connect with groups like that.

Also, creating art is an important act in and of itself, if that's one of your things.

From:

the_rck

I'm willing to write emails. I'm not sure about coding because the last time I did anything similar was 1983, high school, programming in Basic on a Commodore 64.

I hesitate to commit to anything big because that can wreck me.

From:

cesy

info@wandsworthrefugees.org are still in need of help dealing with emails.

http://www.refugees-welcome.org.uk/refugeeswelcome-groups-training-action/ has a list of local groups with email contacts, so you can try the one nearest you.

https://do-it.org/ is a great idea in theory. If you click more options, there's a "do it from home" filter.

If you want to get back into coding, there are open source projects that are happy to teach people from scratch, so you'd have a head start already having done some Basic.

From:

the_rck

Thank you for the links. I'm in the US, so they're not quite a match for what I need, but they're a reminder that there are likely to be options.

From:

randomling

Oh, that's awesome, I had no idea something like that existed!

I'm not sure if you're on holiday yet, but if you have time to ferret such things out, that'd be fantastic.

(And speaking of art, I'm trying to gather the spoons together to figure out how to edit my book, edit it, and then try to get it published...)

From:

cesy

http://www.refugees-welcome.org.uk/refugeeswelcome-groups-training-action/ has a list of local groups with email contacts, so you can try the one nearest you.

https://do-it.org/ is a great idea in theory. If you click more options, there's a "do it from home" filter.

Volunteering to be a trustee can sometimes be a good option, if the charity is happy to have you dial in to a conference call for meetings, or if you can get there in person occasionally (usually once every three months for about 2 hours). Then you answer emails in between meetings.

From:

randomling

Yeah, with a few modifications this is pretty much where I am. I'm gonna make this community, I'll advertise it when I do!

From:

alatefeline

I think that sounds like a good idea. I don't know how to moderate a DW commmunity, but if someone can teach me I can commit to at least a day a week. Maybe more, but I don't want to overcommit.

From:

randomling

Thank you! One day a week is definitely something! (If we could find seven of us like that, we'd be covered! XD)

I'll make this community soon and then we can figure out what's next? (I'd be happy to teach you how to moderate - the technical aspects are pretty easy. <3)

From:

alatefeline

Yay! Okay, what's next!

From:

davidgillon

The UK experience might offer some insights. Most of my disabled friends were fairly apolitical until near the end of the last Labour government, when we realised how bad the new Work Capability Assessment was. Then under the Tories things got rapidly worse, with a calculated plan to paint disabled people as lazy scroungers, and pretty much all of us radicalized.

The more active types formed Disabled People Against the Cuts and protested on the streets. The spoonies, my people, went the web route. There were a couple of blogs/news sites which formed, and which became fairly influential, in documenting what was going on, analysing the reality, and reporting lived experience of harassment and the like. We started to get journalists following what we did, and recycling our news into national media. In some cases we were invited onto national media, and we even had government ministers refusing to appear opposite some of our spokespeople. There were also a small group of journalists who were themselves disabled, and working on social stuff and who were very useful links.

A second prong was analysis of government data to show the reality. The 'Spartacus Report' showed that the government had lied in claiming that disabled people had backed their reforms in a consultation (it was actually c2000 against, 12 for). This forced the first defeat on the government in the Lords since it had taken power, though they reversed it in the Commons. They followed it with a bunch more of influential reports (it helped to have a statistician and a mathematician in the core group).

A third approach was using pro bono law firms to force Judicial Reviews on the government to rule on the legality of their policies (the sort of stuff SPLC does in the States). This has rarely stopped them dead, but has been very useful for publicity purposes, so people see what policy actually means, and very good at forcing them to produce Mark 2 versions of policy that are less offensive than the initial versions.

Another route was activism within political parties, proposing disabled friendly policies at their annual conferences, and forging links with politicians who would give us a hearing. We also had the support of several disabled members of the House of Lords who sit as independents and are acknowledged as disability experts.

It may also be necessary to target supposed ally groups. There has been a very successful campaign to shame charities involved in the government's workfare scheme. I also found it necessary to administer a public slapping to the crowdsourced campaigning group 38 Degrees, which was deliberately ignoring disability issues, even when its own processes said it should be campaigning on them as a priority.

A necessary caveat most of us have burned ourselves out, self-care is important, but burn-out is probably inevitable for a percentage of those involved, so take care of yourselves, and try to keep recruiting new blood.

Ultimately our protests haven't stopped the government, but they have ameliorated the effects, and we caused so much damage to the reputation of some of the firms involved in implementing policy at the point of delivery that one actually walked away from a contract worth hundreds of millions of pounds, because we were destroying the value of their brand.

From:

mathemagicalschema

Thank you so much for sharing your experience. It's useful to be reminded that a coordinated attack from every possible angle is usually more effective than pursuing one approach in isolation.

From:

randomling

Wow, this is a great perspective, and really impressive. I think I've even read a few of those sites! (I'm UK-based and disabled too, but only just got into the ESA support group this summer, so... there's been a fair bit of trying to survive my end. I guess I have some spare energy until they send me the next lot of forms or I get my arse in gear to apply for PIP.)

Not being based in the US, but being aware that Trump is going to affect the whole world, I'm not sure how useful I can be - but in terms of helping to mitigate the impact of Brexit and maybe helping to improve life for my fellow spoonies and my fellow queers, maybe I can do something. That's my hope.

From:

rmc28

I am interested, both directly and because I'm interested in the meta-problem of building campaigning organisations/systems that work for people with limited and varying ability to engage, whether through disability, illness, caring responsibilities, or whatever, without burning people out. Because I am someone who can only engage in campaigning in a limited and varying way, and I can't afford to burn out.

A DW community seems like a start, a place to build up lists of resources / tasks / tools / other campaigns and organisations to learn from?

I'm willing to help as I'm able.

From:

randomling

Thank you! I'm going to start the community very soon, and it's fabulous to have people willing to help. Limited and varying describes my capabilities too. ♥

From:

alatefeline

Yes.

One suggestion: if we can recruit enough, have redundant co-moderators on any given task and a standard form for requesting someone to cover for awhile.

There is a lot of impressively good thought here, I'll be coming back to this over and over.

From:

cesy

I'm keen to help and talk more about this topic. It would be great to talk about how organisations can be more friendly and welcoming towards volunteers who come and go and burn out, because that's more common than many people realise.