POLICY TO THE PEOPLE!

The man sat in front facing us.  He spoke with casual ease, immediately making us feel like we’re already friends.  “How many of you live in an apartment, condo, or home that I can get in?  Show of hands?”  I looked around.  Two hands were raised.  “Guess who’s not coming to dinner!”, he quipped.  Our speaker then shared some of his experiences and at the end of his talk, he asked if we would think about the next time we were going to rent, build, or buy a home.  Would it be a structure that could include him and others in wheelchairs?

Mark Johnson, Director of Advocacy for The Shepherd Center and founder of ADAPT, was one of four national speakers I heard last weekend.  Mark leads by example, showing how one person can make a difference for people with disabilities.  As a newly accepted 2010 North Carolina Partners in Policymaking trainee, I’m learning to change the world for people with developmental disabilities.  The first place I’m starting is in my home.

Mind mapping, brainstorming, a mind-blowing history of disability, public speaking, tales of civil disobedience with intent, landmark litigation and legislation, table swapping, and note writing etiquette were just some of the topics we discussed, or practiced.  (We just talked about the civil disobedience part!)  And that was only the first session.

Twenty-eight advocates and parent advocates selected from across the state gathered in Raleigh to begin this intensive advocacy training.  It was the first whirlwind weekend in a series of eight monthly trainings.  Modeled after Minnesota’s successful program, NC Partners in Policymaking produces graduates who advocate at every level of government and who create and participate in community initiatives that promote inclusion.

Funded by the North Carolina Council on Developmental Disabilities, NC Partners in Policymaking is part of an international program and has a mouthful of a mission statement.  What it boils down to is this:  The people who need and use services should know how to work with leaders to decide policy that affects them, and then go out and do that. The North Carolina Council on Developmental Disabilities is “building bridges to community”.  NC Partners in Policymaking is building the builders of these bridges.

When we speak of disability rights, we’re not only talking about services and supports.  The issue is not about disability; we’re talking about people.  The issue is civil rights.  This hit me hard; it reminded me of what my teenage son said.  “I’m not a woman or in a wheelchair, and I’m not African-American.  But I’m still discriminated against because I have autism.”  He was speaking about social acceptance in high school, but I wonder if someday he’ll want to be a candidate for NC Partners in Policymaking.  I hope he and others in North Carolina will continue to have this incredible opportunity to experience what I’m learning.

The fact that society still talks about Inclusion as an issue only highlights how much work still needs to be done.  Disability issues are civil rights issues.  I want to hear your stories of how the civil rights of people with autism have been violated.

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2 Responses

  1. I haven’t noticed any specific and direct violations of my son’s civil rights, but then he is not even 4 yet. I do however notice an ignorance about autism that prevails in our society, even in our own community, and unfortunately even in my own family. This ignorance confounds the problems associated with autism and delays the needed support necessary to aid in the development of our children. The ignorance is found in school boards, in classrooms, in the grocery store and in our houses of worship. This invisidisability is barely recognized as a threat, instead it is seen mostly as a coincidence of nature or worse, a curse from God. (See comments by Virginia lawmaker Bob Marshall http://www2.timesdispatch.com/rtd/news/state_regional/state_regional_govtpolitics/article/MARS23_20100222-222402/326172/ )

    We all suffer when ignorance confuses autism with poor parenting, or helicopter moms looking for “special education” for their not so perfect kids. I’m certain that my son’s rights are violated behind closed doors, out of ear shot, in hallways after IEP meetings, or in pediatricians offices as our early concerns fell on deaf ears and I know that’s not the only place where Ben’s future is jeopardized.

    Im self employed and the other day I was told that I haven’t been getting calls for work because my “situation” is a “downer” and when I “get your mind right” I’ll get back on the call list. Apparently I talk too much about autism. Not sure if this sort of discrimination violates any rights but it does directly impact Ben’s immediate future.

    I guess one day when one in 50 boys turns into one in 25 and today’s teens diagnosed with autism are adults our world may recognize why it is such a downer and start accommodating our kids with an invisidisabilty. Until then I guess I’ll have to get my mind right, keep quiet and accept God’s curse/ nature’s coincidence. Right, sure, Ill do just that… NOT! 🙂

  2. […] fight tirelessly for the civil rights of this group of individuals.  One of my classmates, Allison Davis wrote about this experience here so I’m not going to repeat what she’s already said so perfectly and urge you to read […]

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