How Much Is Lifelong CPTSD Worth?

Image of Arnaldo Rios Soto, a nonspeaking
Latinx autistic young man in a gray hoodie
with crew-cut brown hair and a clean-shaven face
smiling broadly for the camera. Credit
Matthew Dietz, Esq.

If your child's school staff,  then his residential care home staff,  harm your autistic child and one terrible day, you get a call that the behavioral aide your child finally connects with has been shot and your grown child, having survived so much, was shot at while sitting in the street holding his toy truck, handcuffed, interrogated, institutionalized, and now has permanent complex PTSD caused by the mishandling of a catastrophic encounter with law enforcement, can you think of a price tag that with make it all go away?

That final traumatic event, the moment Arnaldo Ríos Soto screams out in his frequent nightmares in the single word utterance "POLICE", cannot be fixed or undone. Any parent of an autistic young adult would hold those responsible to account for the lifelong care he needs. The state of Florida is accountable for Arnaldo's lifelong, 24/7 care and support. This should not even be in question.

So why then was the cost for his lifelong care cut? Lifelong damage was done. Irreparable damage. The kind of trauma Arnaldo experienced cannot be undone. Put simply it is the obligation of those who caused this trauma to care for him. 

Arnaldo was evicted from his home because the state cut the funding needed for his care in half. He was evicted after a contract was signed saying his care facility would continue his care despite the funding shortfall. His former care home should lose their license.

I have been steadily updating on Arnaldo's situation because but for the grace of God Arnaldo could be my son.

I wrote an essay on the eve of Arnaldo's eviction that was published in Poor Magazine, but still, no one seemed to give a damn. So I'm reposting it here. Let's hope someone out there listens this time.

Arnaldo Rios Soto, Autistic, nonspeaking, and Latinx, was evicted from his current group home.  

His ongoing crisis brought back a personal memory. 

When I was in my teens, I worked summers as part of the Youth Conservation Corps. One of our projects was assisting efforts to reclaim the Palso strip mine. A group of us were standing with our supervising forest ranger on the top of a mountain of slag looking at miles of blasted fields and ponds filled with acid runoff when suddenly the rubble beneath us shifted and three of us tumbled downward with the landslide. The other two managed to stop and scurry back up. But each time I moved, the mountain seemed to respond by raining more debris around and over me. It was an avalanche. I was sure I was going to die that day.

If we were to create a timeline of each pivotal event in Arnaldo Rios Soto’s life, I believe those traumatic moments would morph into a rubble mountain of suffering and trauma. Arnaldo has now seen the ground shift beneath him one too many times. An avalanche is happening, and Arnaldo, like me the day I hung suspended on a slag mountain, is scraped, bruised, too young to die. The detritus of a failed disability care system falling like rubble all around him, he has now been evicted from another group home on the excuse that money was cut from his care budget.

Arnaldo’s life is measured by how much profit he makes for those who offer services to house and care for him. His family’s lives have been punctuated by seeking the land of autism care Oz, that place where Arnaldo won’t be beaten, chemically lobotomized, where someone, anyone, can truly see him as a human being and not a collection of behavioral reports, untreated complex PTSD and medications. They are tired, burnt out with disappointment in that shattered dream of an American mainland utopian disability care system they sacrificed and journeyed from Puerto Rico for in vain.

What will happen to Arnaldo now?

What happens to Arnaldo now is up to all of us. We are his family now. He is in our care. So we need to understand how and why Arnaldo matters. Arnaldo’s situation is greater than his news headlines. His situation right now is bigger than my personal emotional reaction, informed by the fact that he once looked so much like our son that both my husband and I cried out in shock when we saw that video of him sitting in the middle of the street, holding his toy truck, police shouting and Charles Kinsey shot and bleeding beside him.

 It is greater now than Arnaldo not understanding that he was about to tumble down that cruel mountain of police interrogation for the crime of sitting in the street holding a toy truck while disabled and brown. Arnaldo is now the symbol of what it means to be a nonspeaking autistic male of color at the mercy of a system that views the Black and Brown disabled body as a threat. This system, founded on eugenic attitudes, views those with complex support needs as burdens or cash cows. When the profit margin is not enough the cash cow is sent to the slaughterhouse. For someone like Arnaldo, who was harmed by agents of the state, leaving him without shelter and the complex support he needs is tantamount to destroying his psyche entirely. And returning him to a hellhole institutional setting like Carlton Arms is unthinkable and unacceptable.

What that means is that what happens to Arnaldo now has the potential to impact how future cases like his are handled across our country. If we can act together and change his destiny it will demonstrate that our community has the power to transform the destinies of others brought low by this system. It means that the lifetime efforts of hundreds of disability justice activists have managed to change something. We need this hope because we multiply marginalized people have become the targets of hate groups instigated by those who feel that the current administration has given them a free license to hunt those who are oppressed and vulnerable. So what I am doing right now, typing, wheezing with asthma, pushing past joints that ache to write this is reaching out to say this is the time when all of us, ALL OF US can help Arnaldo. #SaveArnaldo can trend on every social media platform enough to make those who made the decision to cut funding for Arnaldo’s care rethink their decision. Organizations can support the AutisticSelf Advocacy Network’s leadership and issue statements in support of the Sotos family. Legislative advocates can reach out to their lawmakers. This takes a few moments, a click, a retweet. But multiplied exponentially, collective cross-disability community action could be an avalanche that forces a positive resolution to Arnaldo’s crisis.

As I was sliding down a mountain of slag towards my death, two other people volunteered to lay flat, one grabbing the ankles of the other, and acted as a human rope. Five others held on to the arms of the person laying flat on the top of that mountain for dear life. Then they all heaved up and backward.

Together, they saved my life.

I am asking you all to make a human and virtual chain. Get him off that sliding bureaucratic slag mountain and back into a place where his family can see him every day and he can be safe and cared for. #SaveArnaldo.

Peace.

Read More

Power, Disability, and The Realities of Consent

Image of Mu, a Hispanic presenting biracial child at age four with short wavy hair wearing a maroon T-shirt, his head
resting on the blue metal rung of the slide he is climbing at one of his favorite playgrounds. Tennis courts can be seen in the background. Image posted with permission of the subject: ©Kerima Cevik 

Over the past decade, I frequently posted the same few photographs of my son on my blogs and social media, and people would occasionally ask why I didn't post more. There are photographs of my son that he likes, and images he does not like. Sometimes I like images he does not. However, I do not have his consent to post the ones he does not like, even if I think my preferences matter. I now ask my children, both the adult and the disabled teen, for permission before I post any photos of them on any public forum. It isn't something I gave enough thought to before the arrival of this age of deep fakes/extreme photo editing/child predators/online stalking/revenge porn/etc, but it is something I am really concerned about now. I spend serious time agonizing over these questions:

Does my nonspeaking autistic son really know what it means that his images are on the Internet forever? Have I been able to successfully explain the Internet enough for him to understand the implications of what that means to him?

This is really important. Where do my parental rights to share my children's photos end and their rights to individual privacy begin? I decided to write about this on the heels of witnessing a parent doing something we parents do a great deal automatically with little regard to the consequences. We proudly display photographs of our kids during the rite of passage events in their lives. And if our kids are autistic, we insist that come hell or high water, they are going to get their rite of passage event photos too, and we are going to splash them all over social media. But should we do this without their consent? And what about their worst moments? Should we record and broadcast those moments for all the world to see?

As my Autistic son is dependent on my care and support, this means I have the power in our relationship. I need to grasp that when I ask a question, he may be afraid I won't like his honest answer. I have to make certain that when I ask my disabled teen son a question, I ensure he is not answering to make me feel better or because he is afraid of giving an answer I won't like.

What are the repercussions if an Autistic teen does not support what their parents are saying or doing? They may lose quality-of-care, affection, support,  even a safe home. They may be institutionalized for being noncompliant. It doesn't take verbal speech for anyone in a position of complete dependence to grasp this. We can't assume that we have their approval or consent unless we have spent years building a trust relationship with them. They must know its okay to say or gesture "no" to you without retaliation.

Autism consultant Carol Greenberg pointed out that even with precautions, what we parents believe is consent may be compromised by a lifetime of compliance training, trauma, and other factors that might keep our autistic loved one from giving an honest response to our requests.

I have seen recent instances of parents putting their reluctant autistic teens through rites of passage events, then broadcasting them in the hope they will become viral. What disturbed me about these events was the storytelling language usage by the parents that left the autistic teen a voiceless prop in their own event, the way the parents allowed coverage of each event without regard to their autistic teens feelings on what content and how much content should be disclosed (one autistic teen's mother bragged about calling boys in her daughter's high school class trying to get one of them to take her to the prom), and the infantilization of the autistic person involved.

And what about autistic people of color who have become public figures after catastrophic harm? While it is important that we know what has happened to them and what is being done to rectify the harm or seek justice, how far can anyone reporting these traumas and their aftereffects go in discussing private health information on public forums without that disabled person's consent?

I've written about Arnaldo Rios-Soto. He was the subject of a podcast, and there was a moment in that podcast episode that some reviewers didn't grasp the need for but for me could be called the pivotal moment of the entire podcast.

It happened during then WNYC reporter Audrey Quinn's interview of disability justice advocate Lydia X.Z. Brown, Esq, on the podcast "Aftereffect." Brown was asked to comment on their view of other's information about Arnaldo's behavior.

Brown responded. "I don't know Arnaldo personally, and I think it's inappropriate to be talking about Arnaldo specifically at his worst moments in such a public forum. Because I wouldn't want someone doing that to me. Don't be a predatory reporter."

When professor Quinn pressed on about third-hand information regarding Arnaldo's behavioral history, Brown answered: "Is that something that Arnaldo has given you permission to talk about publicly? Because that's a really important question."

This was a clear reference to Arnaldo's right to give or deny consent. Gaining Arnaldo's consent was something Quinn agonized about doing. I wondered why an attempt wasn't made with the support of a Speech pathologist, using the methods of communication already familiar to Arnaldo, for example,  by presenting him with a very brief, illustrative YouTube video in Spanish. What many journalists reviewing the podcast didn't understand was how groundbreaking an interview that emphasized the need to gain the consent of a disabled involuntary public figure to share private information about their behavioral health during moments of complex post-traumatic stress was.

So let's think about why I'm saying this. Disability justice advocate Brown demanded Arnaldo's behavioral health history not be debated or discussed with strangers in a public forum without his consent. They reminded Quinn that people who have survived trauma will react to trauma (that is what post-traumatic stress disorder literally means) and that such reactions should not be fuel for victim-blaming or mislabeling survivors. They also reminded Quinn that disabled people are people, and like all people, disabled people can be violent, abusive, terrible or compliant, kind, and passive.

Chanel Miller's identity was protected during the trial of her attacker. She made a decision to disclose her identity and gain control of the narrative about her experience as the victim of a violent crime. Arnaldo, I realized, was never given that privilege, something that regardless of his degree of disability and CPTSD, he should have had the right to do.

Sometimes people end up memes or subjects of viral social media content and lose agency over a moment in their lives forever. For our offspring, who are forced to live in social structures built to deny them any agency in their own lives, it is up to us to do whatever we must to ensure we truly have their consent to present them in public forums.

In lieu of general comments, I hope to hear recommendations on how parents can facilitate their offspring's right to give consent even when that person is a nonspeaking autistic youth or adult, and how to support ID/DD children so they gain the confidence to give or deny consent. This also needs to be a discussion on how to help parents reduce fear so they learn to respect a denial of consent from their disabled children.

Peace.

Read More