Autistic pride is my rebellion (or, why I can’t celebrate Father’s Day)

Yesterday was Father’s Day, which I cannot celebrate. Today is Autistic Pride Day and June is LGBTQ+ Pride Month, which I embrace. It was also the Baltimore Pride Festival yesterday. I put on a Noncompliance is a Social Skill shirt and made an “Autistic Disabled LGBTQ+ Pride” sign, and trekked off. For some, those celebrations aren’t mutually exclusive, but for me, Father’s Day is not one I can celebrate with the others.

“it was said they loved the stars”

It was said they loved the stars:

Enough to carry stardust ever so gently in
pockets lined with meteorite shards, wrapped
in wax paper for fire-starting, a return to origins.

I also wore a B’tzelem Elohim genderqueer Star of David patch. I am a genderqueer and nonbinary Jew-in-progress. B’tzelem Elohim. [Created] in the image of G-d. Not a mistake. Never was, never will be. Some in my life have said otherwise, including my father. I am tired of keeping it a secret online, of indicating the existence of a trauma history but being afraid of saying why.

Enough to try and forgive the father who left burn
marks in the wake of their scarring scorching (re)actions
Who sharply laid blame at their feet and swore
on the flames consuming all the mistakes made

Some in my life have said I’m a mistake and worthless, including the reason I cannot celebrate Father’s Day. I did try to work it out and possibly forgive him, but he never was sorry. I was never the child he wanted. I was never “normal.”

I had a hard time making friends. I said things that didn’t match my tone. I took things literally. I went on long, excited infodumps about extremely passionate interests of mine. I had meltdowns. I had shutdowns. I was fidgety and hyperactive. I had attention issues and problems at school. I had a hard time with conventional communication and reading body language/tone. And over time, I became insolent, aggressive, and volatile, following years of his verbal and emotional abuse.

My disability traits don’t actually matter here, because I never deserved it. Sometimes, that’s hard to remember, because all of that told me I don’t have inherent value as a person. And other things exacerbated his treatment of me, like the occasions he had too much to drink. Through the years, I blocked it out. It floated back in late teenage years, when it was safer to do so. So I tried talking about it: “When you do X, I feel Y.” Then: “If you don’t stop yelling at me, I will end my visit and go home.” I concluded that nothing I did would make that happen. After college, I finally gathered up my nerve.

And also enough to face their father and walk away from the
words and epithets of (dis)grace and turn their face to
G-d instead, found among the shul’s engraved Stars of David
And in the Etz Chayim prayer’s high note of A-do-nai,
And in notes before and after, calling upwards

Enough to embrace what is cold and distant to our eyes,
points in space where no one could ever reach, the fiery fusion
of atoms we can’t get get close to.

During college and since then, I’ve relied on a multitude of things to get me through. I found pride in being disabled and autistic. I found words for my gender identity. I made and still have friends. I stopped talking to my father. I adopted a cat. I found a psychiatrist who treats me like a person, and believes me about things. I began converting to Judaism, where I am finding coping methods in the ritual and prayer.

And I will never be able to celebrate Father’s Day. I hope everyone knows that it’s okay if they can’t, either. Or if they have to pretend so nothing bad happens. Or if they just have complicated feelings. I hope you can celebrate whatever you need to, commit whatever acts of rebellion you need to.

Autistic pride is my rebellion; the personal and the political. Not just against cure culture and ableism, but everything he disparaged. Autistic pride says my life is mine, that there are so many things he never took from me. That if I have pride in being autistic, disabled, and LGBTQ+, maybe I can have pride in the rest of myself. I try to celebrate myself, in the hopes that I will eventually feel like enough. I try to celebrate myself, because there are so many things I am and so many things I love.

It was said they loved the stars
It was said they loved the stars, and it was enough.

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A documentary about “scary” kids scares me on behalf of the kids.

There’s a new documentary out that I don’t think I’m going to watch. It’s titled “A Dangerous Son.” It’s an HBO documentary that tells “a story about families with children who have psychiatric disorders that lead to violent behavior.” Mostly because I have already read all of those stories. Again. And again. And again.  

And I have found them incredibly disturbing each time – but on behalf of the children who are being written off and exploited. Especially because, as Mel Baggs pointed out in a comment: Across violent and abusive sets of environments, we – the kids – are the only ones seen as having a violence problem.

And those environments are so very often the context for “violent outbursts.” Like mine.

People considered sending me to a school for kids with behavioral problems, after therapy and medication didn’t work to quell my outbursts. Because they were going after the wrong thing: It must, the psychiatrist said, be Oppositional Defiant Disorder and anxiety. Not trauma. Not communication barriers. Not what was modeled as social behavior. Just that I was a rebellious, insolent, violent kid.

A throw-away diagnosis. A throw-away kid.

And I already know the kinds of things they’re going to talk about in the documentary: Desperate, at our wit’s end, we’re scared of our so, so very violent and mentally ill kid. But we’re out of treatment options. The psychiatric hospital is out of beds.

.  .  .

It’s possible to advocate for and with children who are struggling and vulnerable with, as I pointed out in 2016, some level of dignity. According to NPR, the director of the film “wanted to show how challenging this situation is both for the child and the family. Often, people assume a child’s behavior is a type of parental failure.” Further, director Liz Garbus told NPR, “Destigmatizing families like Stacy’s who are going through this and seeing how hard they’re trying is really important.”

Well, yes, in part it often is a parental failure, along with the psychiatric industry and other adults in the children’s lives. Whether it is directly perpetuating abuse and violence, enabling it, or failing to recognize the abuse and trauma, it is a failure of adults in their lives. You know what else is a parental and societal failure? Filming kids at their most vulnerable as a way to showcase how “challenging” it is.

You know what’s really important?

Not, as the NAMI spokesperson in the NPR article implies, framing it as a choice between psychiatric beds and intractable violence at home. Because it does not surprise me and my friends that one of the kids’ behavior “didn’t improve” when he got home from inpatient. Because we have witnessed the violence and hostility of inpatient institutions.

Maybe a focus on trauma-informed care and removing sources of abuse and violence in the kid’s life. Maybe that’s also important. Maybe it’s important to fight for community-based services and training providers need instead of more psych beds.

It’s possible to advocate for struggling children with dignity.

.  .  .

Savannah Logsdon-Breakstone wrote an article on their blog following Newtown and a particularly bad Gawker article written by a parent about her 13-year-old son called “I am Adam Lanza’s Mother.” In it, Savannah describes being one of the “scary kids,” the right to privacy, and the dangerous assumptions and dismissals people make. Every word of the piece is important, but here is a snippet:

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary… What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

The author of the “I Am Adam Lanza’s Mother” piece is in the documentary.

.  .  .

And what if filmmakers had turned a camera on me capture my worst moments? Then what? Would anyone have seen the context? Would anyone have seen a vulnerable child? Would anyone have stopped to think about the young person whose future they’re so willing to damage? What this might do to them on every level of being?

No. They wouldn’t have, because it’s already happened, over and over again, to others. They chose to exploit. But they could have provided sensitivity and trauma-informed care to a young, struggling person instead.

However lost in life you may think we are: “None of us are lost causes.”

 

The Judgment about “What Counts” as Sexual Assault

This post goes into detail of an instance of non-rape sexual assault in the first paragraph. 

———-

In high school, one semester, a girl in gym class kept stroking my legs – well above my shins. She sat in the bleachers below me. I told her to stop, several times: it was uncomfortable and I hated and still hate being touched. She cooed at me and mocked my discomfort. I told the gym teacher, and he talked to her, but it didn’t stop. I resorted to lashing out with my legs in the general direction of her face. Finally, I started skipping gym class often that semester.  

I didn’t realize it was sexual assault with the probable intent to do worse until this year. So I never told anyone else at the time, though I don’t know if that would have helped anyway. I thought sexual assault only happened how it did on Law and Order: SVU, which I had caught episodes of in passing. No one ever told me otherwise. Adults in my life told me to carry pepper spray and not walk alone in the dark. They never told me to think about people I was at least vaguely acquaintances with. They never told me what to do if it happened. 

It seems that people, particularly autistic people like myself, rarely get taught about boundaries or consent: indeed, disabled people are often not even taught sex-ed or how to recognize abuse. To complicate matters, many autistic people have been through Applied Behavioral Analysis (ABA). Its methods violate children’s boundaries and bodily control, and leaves them vulnerable to more abuse in the future.

There is also a general perception around sexual assaults that say they’re not “bad enough” or don’t “count,” from all kinds of people. As if it is easy to judge what it is and isn’t sexual assault when you are not the person who was assaulted. It happens to people who have been raped, groped, touched, and/or assaulted in any way. For people who have been groped/touched, it’s that it wasn’t rape, and for people who have been raped, it often is still not seen as a rape. Very few assaults “count.” For disabled people in particular, some reasons include: “you should be grateful someone wanted to do it to you,” and in the case of some disability types, “the person didn’t understand or care it was happening, so it’s not a big deal.”

When people decide they can say what counts as “enough…” That’s not helping anyone be taken seriously when they report/tell people about sex crimes and assaults. Numerous groups of people already have trouble reporting or being believed about assaults. For instance, many disabled people receive direct support from service providers or family members. When these people assault them, it is harder to leave or report assaults. And it helps perpetrators get away assault and makes it more socially acceptable because it’s not “bad enough.”

People who have been assaulted are told it’s not “bad enough” and they should not have too many feelings, or that they don’t have enough feelings so it’s not “bad enough.” And of course, the perpetrators’ feelings are taken more heavily into account. As Rabbi Ruti Regan notes in this piece, “Victims are pressured to disregard their own feelings in order to help perpetrators feel better about themselves.”

If you are: Stop saying we should suck up our feelings because it’s not “bad enough” and it doesn’t “count” and “they have to live with it too”  and …

Stop saying it’s not “bad enough.”

———–

It is important to note that Me Too appears to have been started some time before now by a Black woman, Tarana Burke, when credit is going elsewhere.

Rewriting the Narrative on Psych Ward Abuse in Journalism

Psych Ward Reviews gained a new feature in January 2017: a news article repository of staff-on-patient abuse in hospital psychiatric wards. It is an ongoing effort, both of searches and a morbid set of daily Google Alerts with phrases such as “psychiatric patient abuse.” As part of my search process, I have read over about two hundred articles so far.

One thing of note was that many of the articles on staff-on-patient abuse I found were not in major publications. They were in local news outlets or smaller magazines. And as I knew, there are many failures of psychiatric wards as a crisis care model. These failures can involve staff-on-patient abuse, suicides, ill-maintained facilities, and Medicaid fraud. My focus here is how journalists cover abuse and other failures.

Journalists do so with a few different lines of thought. Many fail to address issues that come with psychiatric wards as the main method of crisis care. These problems include taking away patients’ rights and ability to make decisions. Instead, they discuss issues such as funding and staffing shortages, and overcrowding and bed shortages. However, the reasons for psych ward abuse are power dynamics and ableism.

The system requires institutionalization in secured wards away from the public. Patients then lose their rights (available in theory). The power shifts to doctors and staff, who make decisions about a patient. Many hospitals seek patients for profit. These are settings prone to abuse. We must build a stronger network of community-based crisis care, including peer respite centers and support. There must be meaningful oversight and accountability for any community care providers.

But why don’t journalists talk about creating alternatives to psych wards? The reasoning by many journalists is that shortages result in increased abuse and neglect of patients by staff. They then describe hospital failures as inevitable because of these shortages. But the psych ward system’s issues are structural, rather than wholly solvable with money. Journalists could instead talk about these structural failures. They could do so in many ways.

They could cite the various works around abuse in institutional settings, and question power imbalances. They could push for more accountability and data on abuse rates in articles. They could interview former patients, to see what community options they want. Depending on the size of their platform, they could craft a new crisis care narrative for the broader public. The narrative would present alternatives entrenched in community-based, rights-affirming crisis care.

 

This is not the first time – it never is

This is not the first time – it never is

[CW/TW: confinement, imprisonment, abuse, murder of disabled people below and at links]  

This incident in Georgia is not the first time disabled children have been imprisoned in cages in our lovely US of A, by the way. It is in fact rather distressing to think about, but here it is in a California school, a home in Toledo, Ohio. Also in Michigan. The two Rockville, MD twins locked in a basement. And worldwide, in Australia and Greece and elsewhere.

I think it’s time for people to think about this. That when a disabled person is abused in some fashion, my reaction is of course horror. But my reaction also is “this is not the first time this has happened.” There are constant patterns of abuse of disabled people. I know someone (disabled) who at age six was locked in the freezing basement of their school for hours. We, the disabled, get locked in basements and cages, more often than you may think.

That scratches the surface of the various abuses;it does not cover the whole iceberg. But I will tell you something that I hope is obvious…. If you’re not one of the people who reacts like I do, with knowing that the type of abuse has happened before: Members of society actively abuse disabled people. Others turn a blind eye. Sometimes it takes the disabled person, like Melissa Stoddard, dying for anyone to act on the knowledge that they had been abused. Members of society also actively excuse our deaths

And most of the time, disabled people are not respected in death. Jillian McCabe threw her six-year-old son, London McCabe, off a bridge in November 2014.An NBC article titled “Jillian McCabe was ‘Overwhelmed’ Before Autistic Son’s Fatal Plunge,” came out, discussing the burdens she was facing. It makes no mention in the headline that she threw him off the bridge to kill him. It justifies her reaction to his 2011 diagnosis of autism. The article goes on to quote a psychologist, Dee Shepherd-Look, “a professor at California State University, Northridge, as saying, “quite frankly, I am surprised this doesn’t happen more often. These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated… That is one of the most difficult things for mothers,” followed by saying autistic children can be “rigid and oppositional.”1

Does that go into the iceberg a little for you?



1 Susan Donaldson James and Cassandra Vinograd, “Jillian McCabe was ‘Overwhelmed’ Before Autistic Son’s Fatal Plunge,” NBC News. November 5, 2014. www.nbcnews.com/health/mental-health/jillian-mccabe-was-overwhelmed-autistic-sons-fatal-plunge-n2411761 

Abuse of students with disabilities in school

Recently, near my hometown and current residence, aspecial educator dumped an autistic child into a garbage canwhile taunting him. She had a track record but complaints against her were not taken seriously. This is just one recent example in many cases of educational abuse of children with disabilities. While Georgia has stringent laws in place for these, there are no requirements as for what constitutes punishment. There should be.

“Students with disabilities (served by IDEA) represent 12% of the student population, but 58% of those placed in seclusion or involuntary confinement, and 75% of those physically restrained at school to immobilize them or reduce their ability to move freely. Black students represent 19% of students with disabilities served by IDEA, but 36% of these students who are restrained at school through the use of a mechanical device or equipment designed to restrict their freedom of movement.”

Restraint and abuse is a rampant problem for students of color and students with disabilities. Despite states making policy changes, students with disabilities continue to be retrained and secluded at a high rate. Oftentimes for students of color, it results in being arrested for having a meltdown, as is the case of Kayleb Moon-Robinson, or being handcuffed for escaping the classroom and climbing a tree while having a meltdown, and being pulled roughly down and handcuffed and restrained.
Many states have no policies regarding restraint and seclusion, and of the states that do, fewer have state regulations and statutes addressing it. According to the Government Accountability Office in 2009, officials in Illinois stated that “seclusion and restraint cases involving children and adults with physical or mental disabilities typically have low rates of prosecution.” In Georgia in 2014, educator Melanie Pickens got away with cruelty to children with disabilitiesby using a clause in Georgia state law,O.C.G.A. § 20-2-1001, that would give her immunity if she was disciplining them believing her actions to be in good faith.
Little has also been done to address the problems of common school-to-prison pipelines, resulting students of color being disproportionately targeted for discipline, especially those who also have disabilities, like Kayleb Moon-Robinson, declared a felon at age 11.

Students are being abused, restrained, handcuffed, and secluded against their will. Students with disabilities and students of color experience this at disproportionately high rates. Federal bills fail to push through the Senate. States slowly enact statutes, but prosecution is low. What is to be done?