Normal Is Overrated

Musings and meanderings on the autistic spectrum

May 1, 2011

A Guide For Discouraging Self-Advocacy

[This is my post for Blogging Against Disablism Day 2011.]

The following list is based entirely on my own experiences with several recent self-advocacy opportunities that opened themselves up to me. Despite the fact that many of these events may sound like something out of an absurdist comedy, all of the below occurrences are things that actually happened to me in trying to participate in one conference or another.

How Not To Invite Self-Advocates To Your Disability Conference

  • Require physical attendance at the conference. Do not provide any way for a self-advocate to contribute via the internet, despite the fact that many autistic people find conferences to be sensory overload, and despite the fact that many people with disabilities may not be able to afford or access transportation.

  • Mention the date of the conference in only two e-mails— one sent a month before the conference, when attendees still aren’t sure whether they’ll even be attending, and one sent just two days before it. It’s not as if people with neurological disabilities have bad memories.

  • When asked about funding for transportation, give a vague non-answer and let that be all for several weeks. When asked for further details, wait a bit longer, then give a still-inconclusive answer which does not clarify whether reimbursement will occur before or after the conference. People with disabilities can all afford a round-trip bus ride across the state and/or an overnight hotel stay, right?

  • When a potential attendee asks for directions via bus, suggest using a bus system that does not even cover that suburb.

  • Hold all communication with the team via conference telephone calls, with no provision for live captioning and no alternative meetings via text chat. When asked about this, stumble and suggest calling via relay.

    • Continue to suggest that self-advocates contact you via phone for further information even when they have already explained multiple times that they cannot hear well over the phone.

    • When a self-advocate does call in via relay, talk so fast that the relay operators can’t keep up, never identify who’s saying what, and never give the ‘go ahead’ for the relay-using self-advocate to speak his part. Continue talking even when the relay operator says to hold on because another operator has to take his place.

    • Ignore the self-advocate’s other suggestions entirely, such as holding the meeting via Skype (which has better sound quality, avoiding the muffling from regular phone lines) or relaying the important points live via instant messaging.

    • Do all of these things despite the fact that the relay-using caller has explained all of these issues involved with relay via e-mail prior to the call.

    • After the first one goes so badly, and a self-advocate has told you as much, continue to hold meetings via conference call with no alternatives.

  • As another alternative, provide a screencasting feature that allows viewers to see the slideshow and its notes. Make sure it only supports Windows, with dodgy support for Linux and none for Mac OS. Don’t actually test it to see whether it even works in Windows as claimed.

  • Promise to send summaries/minutes of the conferences within several days of the call, to make up for the failure of accessibility during the call. Never actually send these minutes.

  • Assume that all self-advocates who have been recommended by a particular organization are formally affiliated with that organization in a leadership role, and repeatedly ask them unanswerable questions about that role.

    • Assume that every national or international disability organization with members in your state has a branch within your state.

  • Assume that a developmentally disabled person has any sort of remotely comprehensive idea about the extent of disability-related organizations in their state as a whole, and especially about organizational resources such as funding and meeting spaces.

    • Assume that a self-advocate who has lived his entire life downstate has any clue about organizations and resources that are nearly all upstate, especially when inter-city transportation is so lacking.

  • Ask an autistic person vague questions like “What has worked in your state?” and “What are the challenges in your state?” with no further context whatsoever.

    • When a self-advocate e-mails to ask for clarification of these questions, be equally vague in your reply.

  • And, after a self-advocate has gone through this entire rigmarole, proudly state in an e-mail to all attendees that “if allies are to be part of the movement, they need to be held accountable. Information must be accessible.” (Actual quote, folks. I couldn’t make this up if I tried.)

Filed under: Blog Carnival,General — codeman38 @ 12:00 am


  1. That just sucks. I don’t think you could make some of this stuff up if you tried, hey. I’m here via BADD, great blog!

    Comment by Selene — May 1, 2011 @ 3:59 am

  2. Great post and blog! You can read mine for BADD2011 here if you like:

    Comment by Carl Thompson — May 1, 2011 @ 4:55 am

  3. Wow…just wow, no words for the epic accessibility fail that was on their part.

    Comment by Martha — May 1, 2011 @ 10:18 am

  4. Gah! Thanks for writing such a great post!

    Comment by Attila the Mom — May 1, 2011 @ 6:50 pm

  5. Great post for BADD. Unfortunately have seen a lot of these things too. Thanks for writing about it.

    Comment by Ruth — May 2, 2011 @ 4:01 pm

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