31 January 2012

Self-Advocacy Isn't All About Legislation

Trigger warning: Brief mention of the r-word.


"You're not like my child; my child cannot understand legislation and policy and will never self-advocate like that."

So many times I've heard this kind of remark. Sometimes it's said with disappointment, and at other times with indignation, and at other times with raw anger and hurt. At still other times, it's said with frustration.

But beneath that statement lies one major fallacy -- the conflation of self-advocacy with advocating for policy or systems change. But self-advocacy isn't exclusive to the realm of legislative and policy advocacy. Self-advocacy simply means the ability to express one's needs or desires. It can be very individual and specific to one's immediate situation (i.e. indicating hunger or a need to walk outside) or it can be broader (i.e. expressing the need for different accommodations in a school or workplace setting) or it can be systemic (i.e. policy or legislative advocacy.) As Kassiane Sibley puts it, "advocacy begins with 'no.'" Absolutely anyone can self-advocate or can learn to self-advocate.

That includes all Autistic people, all people with intellectual or cognitive disabilities, and all people who are presumed to be incompetent or incapable of comprehending their surroundings or conversations around them. The term "self-advocacy" originally comes from the intellectual disability community rather than the Autistic community, and refers to a person with an intellectual disability expressing his or her own needs or desires -- becoming an advocate for him or herself.

In some cases, such people also become advocates for other people like them. The term self-advocate then is expanded in its definition to mean "an advocate belonging to the group for whom the advocacy is being done." This means that young people who would be affected by passage of the DREAM Act lobbying for its passage are self-advocates. This means that teachers who would be affected by changes in regulations on education and professional development involved with advocacy around those proposed changes are self-advocates. For us, it means that people with disabilities advocating around issues related to disability are self-advocates.

But not all people can comprehend legislative or policy advocacy. That's not true only of Autistic people, but it's also true of non-Autistic people and people without any disabilities at all. It may be fairer and more accurate to say of a particular child that that child may not understand talk of policy and legislation, or that that child may not understand talk of policy and legislation now. And it may be that that particular person may never grasp the complexities of policy and legislative advocacy. That does not mean that that person cannot self-advocate.

Anyone can learn to express him or herself. Communication and the supports to access alternative forms of communication are key to providing all Autistic people, especially non-speaking Autistic people, the opportunity to self-advocate -- whether that self-advocacy will remain solely within the realm of that person's own personal life or whether it will later broaden and that person will advocate on a much larger scale.

But before I conclude, let me discuss the case of Amy Sequenzia, a friend of mine. For those of you who are parents out there right now, who may have at one time said something about your child never being able to self-advocate or who may have thought it secretly, let me offer a different perspective.

Amy Sequenzia is a non-speaking Autistic woman who usually travels with a support person. Some people have presumed her to be "mentally retarded" or incompetent. Many people might look at her in person for a few seconds and assume that she is "out of touch" with the world around her, "trapped" inside her mind and unable to communicate, or tragically mentally disabled. But Amy is also a self-advocate, not merely for herself, but for other Autistic people. She writes poetry about being Autistic, visits her legislators to discuss policy (communicating by typing), publishes letters to the editor in her local papers, and semi-regularly writes about autism related issues online. Amy is a living testament to the truth that absolutely anyone can learn to self-advocate.

Besides, self-advocacy isn't all about legislation anyway.

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