Autism

Manuals for Self-Advocates

by Dora Raymaker

Published January 14, 2009 @ 04:00PM PT

When I was poking around on the United Spinal Association's web site looking for the Disability Etiquette link (the copy on my hard drive had been sent to me by my VR councilor with a note about inadequate autism coverage, heh), I found a handbook Taking Action: A Step by Step Guide to Becoming a Self-Advocate & Making a Difference.

The handbook provides information on what self-advocacy is all about, some "do's and don'ts," information about accessibility and disability non-discrimination laws, sample letters and advice on handling responses, and information about how the legislative process works. Self-advocacy both in personal and local matters like gaining access to activities at school, and in universal and national matters like meeting with a legislators about bills, are covered. At the end, there's a full page of helpful web sites to disability rights and advocacy organizations.

Because this is a publication of the United Spinal Association, its applicability to autistic self-advocates may be limited--nearly all of the examples given are exclusively about wheelchair access. Further, I would not able to follow many of the instructions in the document because of the nature of my own disabilities--there weren't enough concrete steps for me to understand how to implement the recommended actions. However, that doesn't mean the guide is a complete waste of time for any autistic self-advocates out there to read. I did learn some things.

And also, more importantly perhaps, it makes me think a self-advocacy handbook for us, by and for people on the spectrum, might be a very worthwhile thing to have, no? A handy reference to better advocate for my needs both in my immediate personal life and in local and national government would certainly make my life and work a lot easier! Does such a thing exist and I just haven't found it yet? We need better resources for learning how to effectively get our needs met; the United Spinal manual may provide an example of what one of those resources might look like.

Additional documents of possible interest to self-advocates such as understanding the ADA and understsanding the Fair Housing Amendments Act can be found on the publications page.