Arnaldo Rios Soto, a Latinx male presenting autistic man with dark curly hair
wearing a gray t-shirt is holding a brown and tan teddy bear and smiling at the
camera.
Today, the police officer who shot Charles Kinsey goes on trial. I read a news report describing how Mr. Kinsey has not recovered from the trauma of being an unarmed Black man doing his job and trying to tend to his client and explain to the police that he and his client were unarmed and trying to cooperate. The police officer claimed he was not trying to shoot Mr. Kinsey. He wanted to shoot his autistic client, Arnaldo Rios Soto instead.
It is important to note that police radio notified officers that Arnaldo was holding a toy, and officers 20 feet away did not feel under threat. Quoting Mr. Rios Soto's attorney, Matthew Dietz, in the Miami Herald:
“I can’t believe that every other officer heard on the radio that it was a toy,” Dietz said. Aledda “aimed, but couldn’t hit a 250-pound man sitting cross-legged on the ground, and he’s a SWAT member? If he was aiming at Arnaldo, he’s the worst shot in the world.”
Arnaldo was a passing mention in the story of the aftermath of this tragedy. In fact, the story of what happens to Arnaldo is told in heartbreaking detail on the podcast Aftereffect, which you can listen to by clicking this link: https://www.wnycstudios.org/shows/aftereffect
There were two victims of color that day, Mr. Kinsey and Arnaldo Soto. One was an African American carer, the other was his Latinx and autistic client. There shouldn't be a hierarchy of victims that makes the victim struck by the bullet intended for the other the main protagonist in this horror story. I find it sad but not surprising that this news article uses the power of words to leave Arnaldo a voiceless footnote in his own tragedy.
Arnaldo has paid a devastating price for wanting to take a walk away from his group home. He was targeted because he was autistic and wandering in the street on a route usually taken with Mr. Kinsey, clutching his toy truck. Arnaldo was unjustly arrested, he was placed in the mental health equivalent of hell for too long. Despite his story having a happy ending of sorts (I mean, he's still in a group home), the memories of that day will haunt Arnaldo for the rest of his life, just as they haunt Charles Kinsey.
I think we need to remind the media that today, the police officer who alleged he aimed to shoot Arnaldo Rios Soto, an autistic young man of color, missed and shot his support staff member, Mr. Charles Kinsey, instead.
Read more about Arnaldo, Autism, and catastrophic encounters with law enforcement:
Bus attendant helps our son from his chair onto the school bus in PG County, spring of 2008 Photo @Kerima Cevik.
There is a pattern of behavior based on the
guilty need parents have to try and get the best educational and therapeutic circumstances for their autistic children. I hope to completely eliminate that pattern of behavior in all of us by making it public so any parent who has been advised to do this in the past can stop doing this now.
This pattern of behavior begins a ripple effect of harm that stays with our children and expands outward harming countless other autistic children along the way until something so drastic happens that things are forced to change too late to save the destroyed lives of all children in those expanding rings of abuse and cover-ups.
What I mean is the act of repeatedly trading complicity by silence for some perceived advantage for your own disabled children. This major lapse in ethics to meet the needs of one at the expense of many especially angers me because my son was one of many other victims caught in the riptide of one of these ripple effect disasters.
The actions of two autism parents had a big part in destroying my son's public school life and his trust in nearly anyone who resembles the staff who harmed him or stood by while he was being harmed.
In the wake of the Weinstein scandal and the resurgence of the #MeToo hashtag created by Tarana Burke, a global conversation about sexual harassment has begun and I have been asking myself why autism parents aren't speaking out about the harm done to our children in schools and other settings meant to be safe spaces for them.
Something Anthony Bourdain said in an interview put my scattered thoughts and feelings about parental complicity by silence into language my own emotional reaction to what my son had experienced was not allowing me to write as clearly. He was discussing an ethical judgment call on an offer from a group that was led by an individual with a horrible reputation, and used it to call out Quentin Tarantino for his complicity in the Weinstein scandal :
"[Taking the offer] would have destroyed everything—everything that makes us good, everything that makes us happy, our quality of life. It would have been a lethal compromise, a slow-acting poison that would have nibbled away at our souls until we ended up like Quentin Tarantino, looking back at a life of complicity, shame, and compromise." - Anthony Bourdain
Whenever I wonder whether I should have taken such offers at the expense of my silence or turning away while harm came to others like my son, I remember the guilt ridden mother of a nonspeaking Autistic daughter who called me because she made such a deal after her daughter was abused at school only to find out two years later while autism moms were gossiping during an event at the Arc of PG County that the next nonspeaking autistic child harmed by the abusers of her daughter was my son.
Through bitter tears she talked about having to watch one of her child's abusers receive an award for their service to disabled children. She said she was braver now, she would never have let herself be bullied now, she needed my forgiveness for her silence.
I told her to speak out now. To make things right now. So other children would not be hurt.
She quickly answered she couldn't risk her children's placements in the prime schools paid for by her silence. She couldn't risk her good standing with the school administration and the community. Her husband had heart problems. On and on.
A few days later, the mother of one of my son's classmates called to tell me that she lied to the IEP team during her meeting because they refused to give her son the inclusion time she wanted. She told them that I was building a class action suit against the school and if they didn't give her son the things she wanted she would join it. The team placated her, telling her they would give her son what she wanted. They then proceeded not to do so. She didn't call to apologize. She called furious that her lie was not effective and hoping to get something from me she could use to pressure them further. This explained the recent sharp increase in the belligerence of the school and why my son had been targeted. This was why he was continuing to come home with bruises and hungry because they were not feeding him the lunches we were buying for him. The woman's excuse was that her son was higher functioning than mine so inclusion would not benefit our child anyway. I felt bile rising in my throat and hung up. Two weeks later I heard she moved to another county where the schools were all inclusive model based.
Dear fellow parents,
Each time a school or respite center or camp abuses your autistic loved one and buys your silence by giving your abused child a better placement or more respite or free extra camp aides you are not only complicit in the harm done to your child by not seeking justice for the abuse they suffered but you are directly complicit in the harm done to every disabled child that falls into the hands of said abuser(s) every day you remain silent and 'move on. '
It is never too late for justice. Speak publicly about these people and what they have done. Stop using the suffering of your own children as a bargaining chip to some educational lottery win that depends on your silence. Your continued silence causes the needless suffering of countless other innocent disabled children.
My son is one of them.
Take the antidote to the slow poisoning of your souls your complicit silence creates. Speak up. Name names. Save everyone's children and show your autistic children they matter.
Don't throw your children under the bus so you can feel better about something you got as a result.
I'm as flawed a human as anyone else, and on February 23rd of this year, I faceplanted right into a campaign to market Nike HyperAdapt shoes. Anyone half my age might have seen it, but me, highly emotional eternal researcher for any assistive technology that might improve the quality of Mu's life, was completely clueless and therefore made a fool of myself tweeting my issues and concerns with a giveaway campaign for a single pair of Nike's HyperAdapt shoes on social media that was meant to give a boost to, Nike HyperAdapt shoes, Casey Neistat, and the YouTube channel of a Christian, c5-c6 quadriplegic YouTube creator named Dustin.
Silly me, I thought this was a random act of kindness.
So let me give you all some backstory.
Remember when Eddie Murphy did a satirical sketch on SNL called "White Like Me" , where he posed as an undercover white man for a day to see how the other half lived? One of the premises of the sketch was that "white people gave one another things for free." Casey Neistat, a YouTube personality, and influencer marketing millionaire is the consummate first person singular branding of the white man that makes Eddie Murphy's mockumentary true.
Casey Neistat is the persona of the white dude who people give things to for free.
Mr. Neistat got a free upgrade to a $21,000 first class seat on Emirates airlines and his vlog episode about it went viral. He's been 'gifted' high-tech toys like drones to test (sometimes before they are released for public consumption) and as a result, he is able to stage the occasional giveaway of said gadgets. He has a legion of loyal subscribers to his YouTube channel following his every adventure.
I subscribed, wondering what all the hype was about. I can tell you, the man knows how to tell a story, and how to turn any product placement into an anti-ad story that just happened to fall into the greater story of his day to day life.
Mr. Neistat also flexes his Internet influencer muscles by lending his massive following to some crowdfunding efforts. What he's learned is that he has tremendous power to reach people and get them to act for good and millions of people trust the Casey they see on his vlogs. These efforts when added to self-deprecatingly candid vlogs also humanize him enough to keep his audience from hating the things he gets 'for free', like the $18,000 a night hotel room upgrade he tweeted and vlogged about:
Because his brand is being that white dude who went from a high school dropout to being a millionaire by just working hard at being a dude and doing what he's always wanted to do he manages to exude the chill dude tooling around NYC on his boosted board who no one has a reason to hate.
Mr. Neistat's latest philanthropical giveaway/ad for Nike/ad for YouTube caught me off guard. Here's his giveaway story:
I foolishly tweeted away advice and concerns and basically only realized too late the intent here was audience share and inspiration porn, and neither Nike nor Neistat would care a whit about some parent of some nonwhite nonverbal non-target audience autistic teen nor her views on why objectifying disabled people or asking them or their family members to clamour for a single pair of free shoes was degrading to their dignity. Meanwhile, a week later, the story of the wonderful HyperAdapt shoes just happily ending up in a good Christian visibly disabled fellow YouTuber's hands was serendipitous Hollywood film ending stuff:
The Neistat giveaway and triple marketing win for him generated headlines that read, "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers." By generating excitement then giving the shoes away to a fellow YouTuber who fit the profile of looking disabled enough to "deserve" the shoes and be inspirational enough to post a great gratitude story video, the entire event gave unsolicited advertising points to Nike, improved Casey Neistat's brand, promoted a fellow YouTuber's brand, and offered up just the right dose of inspiration porn for all. The only foolish person in this little social media adventure was me.
What was I thinking? I tried tweeting to Neistat. He completely ignored me of course. Nike, Neistat, and YouTube had their moment of disability inspiration porn, and a deserving disabled white male got a great pair of high-tech shoes out of it that as he [Dustin] put it, will last a very long time because he's a wheelchair user.
They never saw the incongruity of $720 shoes that 90 percent of the people who need them could not afford to buy, maintain or use. Autistic teens like my son, who can't speak to lobby for free shoes would not be viewed by Neistat as disabled enough because he wanted someone physically disabled. Everyone needed to say, "ah, now that person is truly disabled. He deserved those $720 shoes." The visibly disabled person could not, however, have a developmental disability. That would be uncomfortable for this massive audience. So while I was tweeting away about dignity for autistic teens, poverty that made this assistive technology inaccessible to hundreds of autistic adults and young people, the terrible risks of owning $720 sneakers in the neighborhoods most disabled people have to live in, and the idea that even if by some miracle someone could afford these shoes they would most likely be stolen from them or sold to cover rent, food, or critical medications, Neistat and Nike continued blissfully ignoring me.
I should have seen the ignoring happening. But when you're tired from being the primary caregiving parent for your disabled son and you filter technology through the lens of how much actual help it could be for your offspring, you miss clues that you are the interloper in a smoothly run giveaway promotion.
What I do next is a Hobson's choice, really. If I asked Neistat to go learn about Autism, he'd go off to Autism Speaks or TACA and come back with more inspiration porn, pushing medical model rhetoric. So I am here with lessons learned for all of you, knowing that Neistat and Nike will never read this or learn anything from it, but glad to know I may in writing this takeaway something beyond my own time-wasting tweets on disparities in affordable assistive technology.
1. I believe it is about time we begin really writing these companies and letting them know that most autistic children and adults can't benefit from their products if they can't afford to buy them. Footwear meant to be assistive tech must be affordable.
2. Somehow we must set the limits on objectifying our disabled loved ones. Much of this centers on the idea that many adults who become disabled later in life internalize ableism and have no issue with being objectified and used in this fashion. I am absolutely pro-disabled Youtube creators with their own channels. As long as they realize all wheelchair users are not a monolithic group, and individual experiences, while valuable, cannot be generalized to everyone. We need to be asking ourselves how to counter internalized ableism in people who aren't born disabled.
3. What is and isn't inspiration pornography? Where is the line drawn? Is all inspiration porn bad? I don't have the answers to those questions but need them.
4. We need better ways to let the public know what invisible disability is, and ways of demonstrating that developmental disability is as valid a label as physical disability without humiliating our loved ones. I would not have publicly debased my son by detailing private health information on a global public forum in exchange for free shoes, regardless of their cost.
5. I would like to see assistive technology work grow to a collaborative environment not based on pity politics, but based on the idea that easier ways of doing any task benefit all of a society, therefore, including disabled experts without using them for inspiration porn would be the best way to engineer solutions that help them navigate the world.
Here is the big lesson for me, Kerima Cevik, autism parent. I need to realize when a headline like "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers" is just a marketing ploy and not try to explain what real world problems autistic people of color and their families have to people who don't really care. The time I wasted trying to get through to companies and personalities who don't care what it means to navigate the world as nonverbal autistic person of color could have been better spent with my son.
"A Chinese bamboo book, open to display the binding and contents. This copy of The Art of War (on the cover, "孫子兵法") by Sun Tzu is part of a collection at the University of California, Riverside. The cover also reads "乾隆御書", meaning it was either commissioned or transcribed by the Qianlong Emperor." Wikipedia photo credit vlasta2, bluefootedbooby on flickr.com - http://flickr.com/photos/bluefootedbooby/370458424/
Victorious warriors win first and then go to war, while defeated warriors go to war first and then seek to win.
Sun Tzu, The Art Of War
Happy New Year.
It took a long while for me to decide what to post first this year. So many topics matter and so much is happening simultaneously. I thought I might start off 2016 discussing an aspect of the journey involved with the idea of working to be an ally to autistic people and what that should mean.
What happens to some of us who are parent advocates is a kind of euphoria at being thought of by activists as an ally. And that can lead to a grave mistake in thinking. Because many parent allies view themselves as mediators in the autism wars between the medical model community parents and professionals, autism parents in general, and autistic adults, pro-disability rights and human rights stakeholders and activists. By definition, allies are not self-appointed and this understanding expands to include self-designations as bridges between parents and autistic adults in our community. Such bridges or potential mediators already exist. If we are to be parent allies, we should understand that those roles are not ours.
Autism is unique because, in previous generations, it has gone undiagnosed or misdiagnosed for the lifetimes of many people. This is particularly true for autistic women. And while this is not true for my son and his peers, for many autistics autism expresses as an invisible disability. So what exists in our community are a very large population of parents who discover when their children are diagnosed that they are also autistic. We also have quite capable autistic parents diagnosed as children who marry and have children. Those autistic parents are the mediators and bridges in our community. They are in fact the only population of stakeholders in our community who completely understand what it means to be autistic and what it means to parent autistic children.
Meaning that no matter how beloved an ally a parent is unless that parent is both autistic and a parent they are not equipped to bridge the gaps between groups of stakeholders in the autism community. Period. While a parent may also express neurodivergence, it does not necessarily make them autistic. So while their voices are invaluable and necessary to the autism conversation, autistic parents are the group that sits firmly on both sides of the autism wars for personhood, inclusion, accommodation, and representation.
The role of those of us who are parents who do not carry the autism label is to reach out to autistic parents, amplify their voices, and ask how we can assist them in their roles as the voices in two stakeholder roles. In doing so, we must understand that our voices have privilege, and amplification of marginalized voices does not diminish our say or sway in the community.
Young girl to Azeem: "Did God paint you?"
Azeem (Morgan Freeman): "For certain."
Young girl: "Why?"
Azeem: "Because Allah loves infinite variety."
- "Robin Hood Prince of Thieves"
I'm on a mission to throw out the word "normal" from vocabulary and dialog related to autism. The main reason is no matter where I travel in the world or who I meet, I have never come across a "normal" person. The word normal in the lexicon of autism is used to denote an idealized average child. Neurodivergent children, like human skin colors, cannot be based upon any ideal. There is too much infinite variety in everything else about us. Why should our neurology be any different?
Artist Angelica Dass has raised the bar on cataloging the spectrum of human color variation with her Humanae project. There is no one in any discipline that serves the autism community cataloging and mapping the spectrum of neurodivergence in people. When research is done on neurodivergence it is never done with the intent of cataloging divergence as variation and recommending accommodation and support where neurology poses barriers to inclusion. We do not have a map of the spectrum of divergence in neurology. As long as we fail to properly study the human brain before making sweeping decisions, such as creating and prescribing medication to suppress and "correct" things we don't understand, the term autism will continue to be used as a multimillion dollar medical model cash cow boogie man that is of no benefit to either neurodivergent people or their families. To set a standard mid point in a bell curve of what constitutes "normal" brain function without cataloging the entire spectrum of human brain variance on this earth is a bizarre way to go about science. An interaction I just had with my neurodivergent son brought to mind the reason for this part of the culture of ableist viewpoints in perception of neurological difference. Most research is done without the input and needs assessment of autistic people themselves. So they have no voice in what is and is not done with regards to the idea of accepting variations in neurology in general and diverse autistic expressions in particular.
Before you rush to say you know of any "normal" person start by defining what normal is in your mind. You'll find that 'normal' neurology is heavily culturally defined.
Look at your neurodivergent loved ones as who they are. Don't compare them to a societally imposed standard they aren't meant to meet and find them lacking. Then see about advocating for services, supports and accommodations that will help them gain societal inclusion, autonomy, self agency and self advocacy. Expand beyond the limits of terms like 'normal,' understand that variance in neurology like variance in every other aspect of human expression is meant to exist and help to work on cataloging, understanding, and embracing that variance.
