Embracing Chaos The Autism Blog

According to Dictionary.com, advocacy is the act of pleading for, supporting, or recommending; an advocate is an intercessor who pleads on the behalf of another or a cause.  Advocates have worked hard to reshape the way societies view disadvantaged minority groups.  Individuals within those groups have also stood up to fight for themselves and their right to be treated with respect and dignity as human beings.  Individuals with developmental disabilities are no different.  Except, for them, we’ve had to coin a new word before we could accept the validity their actions.

Thus, the concept of self-advocacy was born.  Self-advocacy is a civil rights movement that advocates for the right of people with developmental disabilities to speak for themselves on their own behalf.  For typically developing people, the act of self-advocacy would simply be called standing up for their rights or self-defense.  Yet, society feels we need another word or phrase to describe this same behavior in individuals with developmental disabilities.  Our society still clings to the belief that people we label as developmentally disabled cannot decide how to live for themselves, and we find it rather remarkable when they try to do so.

As much as this need for a separate term offends me, I have a responsibility to teach my children to advocate for themselves and for each other.  Growing up, I knew I could rely on my brother in this capacity.  I didn’t have the need for advocacy my children have, but my brother stuck up for me and defended me when I lacked the power to do so for myself.  He saw value in me that I often couldn’t find in myself, but I learned to stick up for myself by watching him.  I want my children to have the same close relationship and the same desire to stand with each other.  I want my children to grow into strong individuals who will stand up for themselves and the people and causes that matter to them.  I want them all to be advocates and self-advocates.

How do you teach children who struggle to socialize to grow and wield their influence on behalf of their own interests and the causes they believe in?  As I’ve learned with my stepson, this is a difficult thing to instill in young minds even when communication is relatively easy.  My stepson Brandon faces many challenges uniquely his own.  Many people in his life either refuse or are unable to see his potential.  He struggles to believe in himself and his abilities.  He’s starting to understand that he has a right to stand up for himself, for what he believes, and what he can do.  At the tender age of twelve, he risks seeing many doors close to him if he doesn’t stand up to those who would hold him down.  His father and I, and others who believe in his potential, can help.  But, in the end, he must believe in himself, speak for himself, and act on his own behalf.  This is a regular part of growing up.

The same will be true for my other children, Willy, Alex and Ben.  They will face even greater challenges, because more people will see them as limited with little or no potential to grow and develop, to do and be.  Now they are still young enough that my husband and I can shelter them from most of the doubters.  Alex and Ben are mostly unaware that there are those who would limit their potential.  Willy is becoming aware of this, though, as he gets older and interacts more fully with his peers.  Many of his fellow students have grown up with him since pre-school.  They accept Willy, but they also regard him as less capable than themselves, even in areas where he excels.

I attended one of Willy’s field trips to one of this city’s many parks.  When they were playing on the playground equipment, Willy wanted to climb up the biggest slide with the rest of his playmates.  One of his classmates said, “No, no Willy.  This slide is too big for you.  You might get hurt.”  The child meant well, but he was wrong.  This activity was no more dangerous for Willy than it was for the other children.  Willy struggles with the intricacies of language and socialization and processes sensory stimuli different than his peers.   Willy excels as an athlete, but struggles with sportsmanship.  So, I took the child aside and talked to him.  The idea that Willy, who struggled with things he and their other classmates did so well, could play their game and climb the big slide just like them was novel to him.  “But he might fall.”  I nodded.  “He might.  But you might fall, too.  Any of you might fall.  Willy is autistic, which means he can’t do some things as well as you do.  But he can do this.”  So, we watched as Willy climbed up the big slide.  His foot slipped once, but he made it to the top.  There was a new look in his friend’s eyes as he watched Willy slide down – a look of wonder and pride, but also incredulity.

Though he speaks, Willy still has a hard time getting others to listen when he tries to stick up for himself.  However, he’s learning to advocate for his little brothers.  Neither Alex nor Ben have an effective means of communication with those outside their circle.  Willy often acts as their intercessor.  “My brother won’t ask for it, because he doesn’t talk, but he wants a drink.”  Or, “You can’t make fun of him.  It’s not nice.  He can’t help it if he can’t talk.”  Brandon, too, is learning to stick up for his younger brothers.  Still, self-advocacy eludes us.  Perhaps it will come in time.  But, perhaps, you must learn to stick up for others and appreciate them for all their differences, before you can truly stick up for yourself.