We parents are inoculated with fear and ableism from the moment we hear the diagnosis of autism, thanks to the way most professionals present this news to us. Probably the biggest detriment to autism parent advocacy has been the inability to move out of "reactive advocacy," a type of guilt-driven ripple effect of all the fears and suppositions indoctrinated into us on the day our children are diagnosed and at every instant, our divergent children's needs intersect with the systems meant to try and meet them. This is the legacy of the culture of hopelessness and learned helplessness that goes hand in hand with the medical model of autism. This mental state is damaging to us, our families, and our divergent children. It is also emotionally unsustainable. In order to be successful parent advocates to our children, we must not usurp their civil rights ourselves. We must assist them to self-advocate and fight for them to gain a seat at any table where decisions are being made about them.
For those who say that young neurodivergent children like my son, who is deeply autistic and nonspeaking, are incapable of self-advocacy and self-determination, I quote Kassiane Sibley, who says, “ advocacy begins with No!” “No!” does not require oral language. It can be stated in action and communicated non-verbally. If my being an autistic parent and saying my son is quite neurodivergent, but I must presume he is competent to seem incongruous, I can say that it is not.
I hold these views naturally. I am labeled as a member of five minority groups. My little brother, my older sister, and I were the first three Black students to integrate an all-white elementary school in Illinois. We suffered hardship and maltreatment at a time and circumstance when racist attempts to stop the desegregation of schools continued. But we stood our ground. To stand your ground as a child is hard. It is a lonely business. But it makes you a stronger person. I want my son to stand his ground; therefore, he must see his mother standing up for him, standing by him, and by these actions, I must make it clear I respect him. I want him to instinctively self-advocate before all else. I want him to know and remember children who had to self-advocate and rose to the challenge. Children like Ruby Bridges.
U.S. Marshals escort Ruby Bridges from school photo credit unknown |
I envision the future of autism parent advocacy as the continuing process of acceptance of our own children as they are, preparing them to be self-advocates who can be as strong as Ruby Bridges was and continues to be. I hope to see parents leaving the realm of fear-based reactive advocacy and joining neurodivergent advocates to produce inclusive, proactive ones. Collaborative change that truly benefits autistic people throughout their lifespan. I see the brave autistic civil rights activists of today leading the way for our generation of children’s voices to be heard, and I am relieved that someone like my son echoes his voice. I am proud to stand with him in this fight and know what my role is in it.
"Nothing about my son without my son"
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ReplyDeleteJames Madison was a slave owner and even in death, made no attempt to emancipate the 100 slaves still in his possession. So this comment of yours here is particularly insulting to both Ruby Bridges and to me, as I am a woman of color.
ReplyDeleteMy mistake, I was simply referring to the founding fathers as a source of empowerment. I now know that it may not be your cup of coffee, sorry about that...
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