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7:02pm May 27, 2014

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youneedacat:

patternsmaybe:

youneedacat:

  1. nicocoer said: there’s yep a dfferent feel to mult dx communitys. (\keybord going) as i spend more tme wth dd comm, There are parts of asd comm that find more unsettlng.

Interesting that someone else has a similar experience.

I had been involved in the DD community for…

I don’t know what people mean when they say the DD community. I don’t know where to find it.

That’s mostly because it’s not very heavily online-based.  The things I’m about to list are not all good places, and are not all places you’d want to be, and are not all places you can get to necessarily, they’re just places where there tend to be a lot of DD people and communities form, that range in quality from good to terrible, and that may or may not be suppressed or controlled in various ways by staff.  (In fact, the biggest flaw in the DD community tends to be staff taking over.  That’s its Achilles heel.)

  • Programs that provide services for DD people.
  • Group homes and similar places.
  • Sheltered workshops
  • Day programs
  • Recreational programs of various sorts
  • Summer camps
  • Special Olympics
  • People First
  • Other specific, local self-advocacy groups
  • Self-advocacy conferences of various sorts
  • Social groups that are specifically for DD people (some organized by DD people, some organized by family or staff)

I’m in a program that provides services to DD people.  They are connected to a lot of recreational and social opportunities.  We have a resource center that offers a wide variety of activities to DD people — I sometimes go to an art program there that’s pretty amazing, that’s where I did all of my paintings except a couple.  They have dances that I’ve been to.  I’ve been to a really terrible recreational program that almost killed me.  I signed up for Special Olympics but then my health crashed so I couldn’t do it.  I’ve been to lots of self-advocacy conferences locally.  I’ve been to some meetings of self-advocacy groups, with mixed impressions depending on how much control the self-advocates had and how much control the staff had.  I’ve been in special ed settings and mental institutions that both had a mixed psych and DD population.  I’ve been to a day program.  I used to go to a social group set up by a woman with an intellectual disability who got lonely, and went through our agency to set up events where we’d go places with each other in a big group — like the beach, or arcades, or other things like that.  

Most of these things are offline.  A lot of people can’t read or write, or have enough trouble reading or writing that they’d rather do things offline, even though there are becoming more and more ways for people to use computers without reading or writing.  A lot of the history of the self-advocacy movement is known mostly through oral traditions rather than written ones for the same reason.  This means that it’s very hard to find this community online, even though there are plenty of DD people who can read and write, or who can use computers in some other way.  

A warning, again, that the biggest danger in the DD community for things going wrong, is staff taking over in really horrible ways.  Every community seems to have its Achilles heel, and for the DD community it’s the fact that a lot of us are living under the thumb of staff and they even infiltrate our self-advocacy groups and control them because they like the way it makes them feel, or because they feel like we don’t understand enough to do it on our own.  Often we do need help with organizing things, so we’ll have a nondisabled group facilitator, and then the facilitator has to be good at not taking over, at helping without stepping all over everyone’s needs and desires.  And that’s hard, and a lot of facilitators can’t do it or refuse to do it.  

The worst situation I saw was one where there was actually a guy with CP who was supposed to watch over the facilitator and make sure that she wasn’t taking over with too much control.  There were two huge problems there:  One, she was his boss and he got paid through her, so he was afraid to go against her.  Two, he was blind, and she did most of her controlling of people through body language that he couldn’t see or read.  When I tried to bring it up to him, he said that this job paid more than any job he’d ever had and he wanted me to not bring it up again because it was too upsetting and he didn’t want to lose his job.  That happens a lot, too.

But basically there’s a lot of places you can find DD communities but almost all of them are in the offline world.  Self-advocacy conferences are the biggest groups I’ve seen put together in one place at one time.

One reason I keep posting all these videos of self-advocates talking about various issues, is that a lot of people online have very little exposure to DD self-advocacy and I feel like people should know there’s this entire world out there, that they’re usually unaware of even if they’re part of disability communities in other respects.

I have a life that is not online but I don’t know how to find people on purpose I just know my life is better when I certain kinds of people want to meet people who share my values

also have a research project that needs doing need to bring perspectives into a place they’re absent from don’t want to jsut online people

If you email me your basic location privately, I can try and see if I can find any events locally to you that you might want to attend.  (With no guarantee as to quality, but I do know how to look for that stuff.)