Ruby Bridges, Norman Rockwell, Self-Advocacy and Allies

Adapted from My Presentation for Autistic Empowerment, The Civil Rights Model

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
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In 1960, when Ruby Bridges was 6 years old, her parents responded to a call from the National Association for the Advancement of Colored People (NAACP) and volunteered her to participate in the integration of the New Orleans School system. She is known as the first African-American child to attend an all-white elementary school in the South. She attended William Frantz Elementary School in New Orleans. When Ruby Bridges walked to school each day, she was pelted with rotten tomatoes; she walked past racial slurs and foul language painted in graffiti on the walls around her; crowds shrieked threats to torture and kill her and her family. Armed federal marshals, at the order of President Eisenhower, brought Ruby to and from school each day. Her mother could not take this walk past a certain point with Ruby. She had to do it alone. She kept her head up and did not cry. At six, she was a self-advocate of circumstance, as I was in my time and my son is now. Hearing of Ruby's courage in doing this, Norman Rockwell made a life-changing decision. He did not renew his contract with the Saturday Evening Post. Instead, he signed a contract with Look magazine, which allowed him the freedom to paint whatever he wished, and he began with this painting, which tells the story of Ruby Bridges and her brave walks to school. His painting, entitled, The Problem We All Live With, became an iconic image of the civil rights movement in the United States. This painting is the symbol of Rockwell beginning to express his views through his art, after which he began civil rights and justice themes. Norman Rockwell crossed a line. He began to use his position of privilege and his artistic talent to support the cause of a group he was not a member of but whose efforts toward social justice he supported. He took steps towards becoming a civil rights ally. What do autistic disability rights advocates mean when they say the word ally? I have a brief checklist, adapted from the original by Dr. John Raible, that might give some insight into what it does and doesn’t mean to be an ally. I have made some modifications so the list might be used to clarify what an anti-ableist ally is.

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"

About the Autism Dialogues

Welcome to my blog. It is new. I started it this summer. I am not a writer. My grammar is atrocious.  But I am representative of a demographic of parents who are underrepresented in the autism conversation. I wanted to try and reflect that feeling of being outside of discourse and public policy. I also want to infuse a kind of hope. Hope that, in the long run,  painful as such dialogs may be, they have the potential to change the quality of life for both our children and the only adults who truly understand what it means to be autistic.

Shannon Des Roches Rosa moderated a series of dialogs on The Thinking Person's Guide to Autism. But as I read each day's dialog, I felt outside the conversation. No one appeared to speak from the perspective of my community of parents.

Now I've had a change of heart. I think Kristina Chew and Paula Durbin-Westby wrote eloquently from the perspective of parents in a way other parents in my situation can understand. I am someone who has gone out in search of autistic adults who are nonspeaking like my son, in the hopes that listening to them might give me an insight into how to best help my son. I am also quite painfully familiar with the uglier side of discrimination both as a matter of daily life and as my son’s parent and advocate.

My son will be an adult in the blink of an eye. So I must try to understand self-advocates as much as I can and I hope my son is someday able to advocate for himself. If he can’t do so, I must continue to be his voice. My daughter is a medical interpreter. When you interpret you are the voice of another person. You don’t say what you want or what you think is best for the patient. You translate verbatim as much as linguistically possible. That is what my goal is should he not be able to self-advocate. To be an interpreter for my son.

At some point everyone in this community must grasp that we are part of an effort to gain civil rights for our autistic children. To parents like me, who are not autistic, don't give up. Keep reading. I'm trying too. I'm determined to cross that divide with you.

Two Autism Stories

Several years ago, I attended a meeting of parents and care providers to discuss the lack of county services available for their loved ones on the autism spectrum. At the meeting, an African American medical professional told me something that still gives me pause: "Autism is a disability for the rich," she said. “Only the wealthy can afford the costs of the intensive early interventions we as parents need to help our children succeed." She continued, “As African Americans, we are disproportionately caring for our children on the spectrum as single parents, with limited means, and are dependent on institutions like our public schools to give whatever supports they can."

As I continue my three year fight for appropriate supports for my own child, I ask myself each day, “Was my acquaintance correct? No matter how diligently I try, no matter the effort I make, will I be unable to provide my own child with the help he needs because of financial and racial disparities?”

Two stories show this disparity of care, resources, and options in a way that leaves me with heartbreaking concern. A Journey into the World of Autism is a series of photographs with commentary, about an against all odds, full on battle for the dignity and civil rights of a 14 year old African American boy, Daniel Tuttle Jr. Daniel was given a diagnosis of autism when he was 2 years old. He never received early interventions or any support services. His battle for services is still being fought by a woman who is not his mother. She was his first daycare provider as an infant; when she heard Daniel's mother was out of work and overwhelmed trying to manage his care, she did not hesitate to go through the process of becoming his care provider.

Autism Lives Daily in Our House briefly outlines the story of Jack Drinkwine, a white child diagnosed with autism who is receiving intensive interventions and supports. He has teams of medical and educational professionals working with him to improve his ability to navigate his world. Jack's mother, a university professor, discusses the combination of therapies and supports paid for by a combination of funding that Daniel Tuttle's care provider could never hope to achieve.
Daniels is homeschooled and sent to a speech therapist. Daniel's only other therapy, administered by his care provider, is a GFCF diet and the basic set of the shoebox task system, the foundational exercises in the TEACCH method. Daniel's care provider continues to try to place him in a safe educational environment where he is able to adapt to the classroom and receive at least minimal services and supports. Meanwhile, Professor Drinkwine advises other parents to acquire the intensive interventions for their children that she has, never considering that many parents and care providers do not have the resources available to them that a family with two working parents- a university professor and a high ranking military officer- does.

Is this disparity of service placing African American children on the spectrum at risk for more confrontations with aversive behavioral management techniques, fewer educational and therapeutic supports and a greater risk for either institutional care or catastrophic encounters with the criminal justice system as adults? It is a chilling thought for me as I look at my dark skin and my deeply autistic son.


Please read both articles and let me know what you think:

A Journey Into The World of Autism
Autism Lives Daily in Our House

More on Daniel Tuttle Jr. from DC & NYC Photographer Eli Meir Kaplan:
Against the Odds