Friday 25 December 2020

The Problem With Celebrity 'Expertise' on Social Media Platforms

A social media platform these days can be problematic. Not only because celebrities are somewhat forced to share their opinions on a variety of subjects they know little about, but because they inevitably give them, even if they have no idea what they’re talking about. For some reason, a large percentage of the public tends to believe whatever asinine thing they say, despite their complete lack of expertise. As an autistic, I’m particularly sensitive to this. In part, because neurodivergents are regularly attacked and endangered by these unproven statements, but it’s also in large part because my traits are such that I despise bad information and unfair practices. Fairness and justice are a big deal to me.

Lies and disinformation, even if unintentional, are harmful. The spreading of misinformation results in people dying. That may seem like an exaggeration to those who are privileged enough to never have been subjected to these situations, so I feel it is necessary to illustrate my point with some examples.

LGBTQ+ people have been subjected to hate and ‘street justice’ for their differences from the majority of society, for centuries. This prejudice increased with the actions of the American Psychiatric Association (APA) which labeled homosexuality a psychosis some time ago. In the mid-1900s a psychologist did a study which proves this was not the case. The APA refused to remove the label of psychosis until 1987. The World Health Organization (WHO) didn’t remove it until 1992.

Electroshock therapy was used until gay people vomited, and they were forced into going on dates with the opposite sex. In other words, they were tortured and told they didn’t know what they were, by people who couldn’t possibly have known such things without being psychic, and then they were forced to behave according to the conventions contemporary society wanted displayed.

Stonewall is just one result of that. The ~700,000 people who died of AIDS (in the US alone), is another result. The prejudice against gay people led the Reagan administration to ignore a major health crisis. It wasn’t until Reagan’s daughter came out as a lesbian (and Ronald Reagan became terminally ill) that Nancy Reagan changed her tune, but by then it was too late. They treated these people as if they deserved to die for their ‘life choices’. While Mike Pence was Governor of Indiana, his prejudice against LGBTQ+ people led to a large outbreak of AIDS, which was badly mismanaged.

Even if homosexuality were a psychosis, they would still have no choice in their actions, but people are blamed for their mental health challenges, no matter what they are. The prejudice against anyone with a psychosis has always been a problem. The word ‘psychosis’ is deemed to be synonymous with dangerous.

It took the APA until June 2019 to apologize for their actions against the LGBTQ+ community.

The same thing happened with transgender people. The APA labeled it a psychosis. Trans people have been subjected to cruelty and murder for their differences, just as LGBTQ+ have been. They cause no harm to anyone, and are far less likely to commit acts of violence than the population at large, but are subjected to violence on an ongoing basis. Searching for trans violence sources on the internet results in a plethora of studies on violence against them, rather than displayed violence. The reason for this is simple. They have been singled out by the APA, and the non-trans population was thereby given permission to single them out for abuse and discrimination. 22 trans people in the US were killed in 2019 alone. Nearly all of them were black transgender women, so racism is also likely a factor, but bigotry is still bigotry.

I won't even get into the JK Rowling debacle, for which she seems to have left Twitter.

It wasn’t until the APA released DSM-5 in 2013 that ‘transgender’ was officially removed as a psychosis and they were recognized as knowing who and what they are. Apparently their 2019 apology encompassed trans people as well. However, the damage was already done…once again.

This infantilizing and patronization of human beings by the APA has led to violence and murder. Repeatedly. Now they’re doing the same thing to autistics, and celebrities are lapping it up. William Shatner is only the latest in a long line of celebrities spreading misinformation about autism, and it pains me to admit one of the worst for spreading lies about autism is another Canadian; Jim Carrey, along with his former partner, Jenny McCarthy Wahlberg, has been spreading vaccine misinformation for a very long time, claiming the work of former physician Andrew Wakefield proved vaccines caused autism. Work for which he later lost his licence to practice, because he concealed his funding and manipulated the data to ‘prove’ his theory for his patrons. Anyone can buy a study, apparently, so one always has to look at the funding sources.

Many studies have been conducted since Wakefield’s shameful work, and they have all debunked his hypothesis. But the damage was done there, too. The anti-vaxxer movement was born and we suddenly started having measles outbreaks.

We also started seeing a lot more hate for autistics. We’ve been told autism is a disease and a disorder. We’re told constantly, by people we once admired, that we’re a drain on society and should be kept from view of the public. The premier of the province of Ontario, Doug Ford, is one such public figure. He’s claimed autistics bring violence into neighbourhoods, among other heinous statements.

When autistics who can speak actually speak out for autistics, we’re told we couldn’t possibly know what we’re talking about, and that we don’t know what’s in our own brains. We’re told we’re audacious because we speak for fellow autistics who are non-verbal, such as the latest tweets by Bill Shatner. ‘Yet another high-functioning autistic thinking they can speak for non-verbal autistics.’ (I’m slightly paraphrasing, as I’m not interested in promoting his account by grabbing the actual tweet. You can look it up on Twitter if you don’t believe me, however.)

My response? Yet another white, male, cisgender, ableist celebrity who’s arrogant enough to tell us who we are. This is a man who will never understand prejudice. He converted to Judaism, rather than being born into it, so he didn’t experience the anti-Semitism many Jews have experienced. None of Shatner’s co-stars from Star Trek seem to like him very much, though, so I guess I’m not alone in my disgust of him. In 1998, according to IMDb, James Doohan said, “I wish I could say that Bill is a nice man, but he isn’t.” He also said, “I like Captain Kirk, but I can't say that I'm very fond of Bill Shatner.” Shatner refused to appear on stage with George Takei at Doohan’s last convention, and while Leonard Nimoy sponsored Shatner’s conversion to Judaism, the friendship later soured to the point where Shatner did not attend Nimoy’s funeral, due to Shatner filming Nimoy without his permission and including the footage in a documentary about Star Trek captains. Nimoy had already refused to be in the production, and Shatner’s arrogance led him to ignore his friend’s refusal. Clearly, Shatner exhibits a behavioural pattern to suggest he believes his own wishes trump the personal rights of others. Even Walter Koenig has issues with him. If it weren’t for the fact he still has a huge platform, I wouldn’t bother with mentioning him, since no one seems to like him anyway. His verbalizations indicate we should maybe just remove the last three letters from his surname, because that’s the kind of thing that falls out of his mouth.

As an autistic, I can tell you far better than a neurotypical person how another autistic might be thinking. I can describe what goes on in my brain quite well, and I can fully relate to what other autistics are thinking and doing. I watch non-verbal kids as they play with light and shadow, and I remember the feeling of watching pretty lights and getting dazzled by them, soothed, lost in their beauty and magic in a way non-autistics will never understand. While I don’t spit or play with fluids, I have similar sensory behaviours. I touch fabrics that are particularly soft, and I stroke them repeatedly. I pet my ferrets. My feet move back and forth on my bed sheets, because it calms me and helps me sleep. And also because it just feels good. Not in any sexual way, but as a sensory experience. I’m very tactile, but extremely selective about it because of my sensory issues.

I watch parents struggle with their non-verbal autistic children, and I grow frustrated with the lack of information they’re getting. They really don’t know how to work with their kids, and there are some very simple things they could be trying (such as musical interaction and interacting in such a way as to understand the world their child is seeing). Instead they’re told to put their children into ABA, which is behavioural adjustment that results in nothing more than a temporary fix. It’s also well-known to autistics as a form of torture. They tried it on gay and trans people, too. It’s called conversion therapy.

There is no evidence to support the hypothesis that ABA works for anything more than the short-term, as the latest, admittedly less cruel, version of it has only been practiced for a short period of time. It instills a heavy load of guilt and shame no autistic should be carrying. We cannot change. We can only work with who we are. Dogs don’t become cats, gay people don’t become heterosexual, and autistics don’t become neurotypical. It used to be worse, with 40 hours a week of intensive 'therapy' to 'fix' autistics. We are not broken. We just are.

We can, however, learn to communicate through other means, such as music. One child learned to speak through the song "Old Town Road" by Lil Nas X and Billy Ray Cyrus. It baffles me why this method is semingly never used. Singing along to a song is by far a more fun way to learn to speak, and fun is the best way to get an autistic to cooperate. Many of us simply refuse to speak because we do not wish to, and frankly that's our right.

Autistics are regularly experimented on without our consent. It’s a violation of our human rights in both the US and Canada, and no one is doing anything about it. We autistics are terrified and traumatized by society’s reaction to us. And it doesn’t help that defense attorneys are attempting to use autism as a defense for mass murder. It’s happened in the US for mass shootings, and in Canada most recently with Alex Minassian, the man behind the van attack on a Toronto street. They’re trying to say his extreme autism means he doesn’t know right from wrong. He clearly does know the difference. He just doesn’t care. Sociopathy or psychopathy is the more likely explanation. It has nothing to do with autism, specifically, but rather a comorbidity that can potentially come with it. I have ADHD and OCD traits as comorbidities.

Psychologists telling people that autistics kill is going to get the rest of us killed. Celebrities telling autistics we don’t know our own minds isn’t helping anything. We’re being gaslit in every conceivable way.

The solution? Psychologists actually listening to autistics.

But that is not happening. We’re being labeled psychotic and dangerous, and it’s showing up in courtrooms, where precedents are set. We aren’t being asked who we are. We’re being told who we are. No one has the right to do that, but the ‘autism’ label has somehow made these people feel they have permission to dissect us in the most public and humiliating ways possible. We’re being talked down to by celebrities with platforms on social media who are under the mistaken belief they’re qualified to do so.

Many autistics are so intelligent they qualify for entrance into Mensa. Actors think they’re smarter and better educated.

When the APA decided to roll people with Asperger’s into the autism spectrum in their diagnostic manual, major problems started cropping up. They didn’t bother to ask autistics about their thoughts on the matter. They didn’t bother to ask anyone with Asperger’s. They simply decide to lump us together, uncaring about the damage they might do to all of us.

The public at large does not understand autism. The majority of people think it’s a single arc, with verbal and so-called ‘high-functioning’ autistics on one end, and non-verbal and ‘low-functioning’ autistics on the other. That isn’t how it works. There are many bands on that spectrum. Some of those bands include verbal skills, others include life skills. Some bands correlate to creative ability, etc. A non-verbal autistic can be a musical genius, whilst a verbal autistic can be terrible at life skills and social interaction.

Every autistic is unique, just like neurotypical people. Labels have turned us into a race of people who are then subjected to bigotry. Autistics don’t all look alike, just like people of colour do not look the same. Bigotry in any form is fear. People fear that which is different, until they understand it and realize it isn’t a threat. However, we have been labeled a threat. Now what? Are we going to be rounded up and put into concentration camps?

Parents who cannot handle their autistics children are looking for solutions, and institutionalization is one action they sometimes default to. It isn’t a solution. It’s a way to get away from the exhaustion they’re feeling. And it’s a way to make sure their child is looked after if they die. It doesn’t improve anything for the child, and in all likelihood makes it worse for them.

Parents want to ‘cure’ their child. But, it’s not a disease, and it’s a bloody insult to call it one. Autism is part of our entire genetic structure. It involves a thinner myelin sheath, which means we have less insulation on our nerves (an electrical system, so that may indicate the nature of the difficulties we face with communication just within our own brains) and tendons. We’re born with it, and the signs can begin to show very early if a parent is observant. There have been studies to indicate deficiency in DHA may be a trigger. DHA is a type of fat found in meat.

Pregnant women who are vegan may not be consuming enough DHA, and the first two years of a child’s life are important for consuming fat, as well. The brain requires it. Constant dieting has led us to a point where parents are not allowing their children to eat enough healthy fat. Doctors have recommended homogenized, full-fat milk for children under the age of two for decades now, because their brain requires it for proper development. When I had my own daughter more than thirty years ago, they were already recommending full-fat milk. I made sure she got it.

While many children are diagnosed around the age of two, the traits will have manifested before then. Otherwise, parents would not have taken the extreme step of having their child diagnosed. It is, after all, a very expensive thing to do. In Ontario, it costs anywhere from $3,000 to $5,000 to get an autism assessment. And that’s in a place with healthcare insurance. That amount is astronomical to most young parents. So they wait until they can get assessed through the province. In Ontario the waiting list was about two years prior to the commencement of the COVID-19 pandemic. It will be much longer now. In other words, people are correlating the diagnosis with vaccines simply because the diagnosis occurs around the same time children receive certain vaccines. Correlation is not causation, and society would do well to remember that. Making these assumptions has hurt not only autistics, but children who have subsequently contracted nearly-eradicated diseases that experience a resurgence when parents refuse to vaccinate their children.

Fear drives these issues. Parental fear for their children, societal fears about safety, political fears about elections where politicians use autism as part of their platform, and celebrity fears about things they don’t understand. None of these fears are based on scientific evidence. And, of course, confirmation bias is something of a problem. People find sources that confirm their beliefs, rather than looking at evidence presented from all sources to determine the most likely point of truth.

One additional comment from William Shatner had to do with people telling him to stay in his lane, and was his response that (paraphrasing again) only people under thirty would use that phrase. Seeing as many of Donald Trump’s cohorts use that term, and many, many people of my own generation also do so (unrelated to Trumpism), he’s off-base on yet another assumption.

Neurotypicals do not understand neurodivergents. Psychologists and psychiatrists think they understand us without bothering to ask if they’re right.

So, speaking as a 49-year-old autistic woman, who very clearly has had an online presence for many years and is a real person who writes real books, William Shatner, stay in your lane. You’re hurting autistics in a way you can’t even understand because you’ve never experienced real hate and prejudice. You are more of a danger to society than any autistic, due to the garbage you speak. No one is threatening your life for something you have no control over. Autistics are already being abused and killed. We don’t need more ‘help’ from celebrities.

Saturday 12 December 2020

Going Non-Verbal, the Dangers of Advice, and the Latest Music and Writing News

Since this blog was originally intended more for personal use, and to practice my writing, I'm going back to that format for a little while. It helps me get back into it, and also fills people in on how things are going in my world.

I went non-verbal the other day for nearly twenty-four hours. Normally I talk a lot around my husband, but I couldn't bring myself to speak. I was upset about something that wasn't anyone's fault (anyone currently in my life, at least), and couldn't talk about it. It was so huge inside me, taking over every thought I had so that I was unable to care, or speak about, anything else. And I wasn't ready to discuss the problem until I figured out what the hell it really was.

I do that a lot. I didn't even notice I was doing it, but as I look back at my life with the fairly recent knowledge I'm autistic, I see the behaviours I didn't see before. I see the years of getting lost in books. I see the many months of gaming, when I barely spoke to anyone. Later in my life it was guitar, where I practiced for hours every day. My activities are nearly always solitary. Music is a little different, since I'm making a career out of it and my husband rehearses with me, but my whole life has revolved around activities where no one else was involved, and I had no need to talk. Even my jobs were solitary. And my work still is, for the most part.

I spend my time in silence thinking about what's bugging me. Until I have it sorted, and find a solution, I don't want to talk at all. Not about anything. Even when I do have a solution in my head, I don't discuss the problem unless it involves others and I have no choice. People have complained about that trait, telling me if they had known they would have been there for me, but I don't want anyone there for me. Usually that involves advice I would never take, and since people are insulted by that I prefer to avoid the situation.

It's not just about not taking advice, since I don't like giving it, either. Even when people ask me. I don't feel people should be giving advice on anything unless they're experts and fully understand the situation the other person is in..and they should never give advice without being asked for it. Anything else is rude and intrusive. I find it offensive. It's like saying to someone, "You're too stupid to figure this out on your own, so let me tell you what's best for you."

Maybe it sounds arrogant, but my IQ tests say I'm intelligent, so to assume I don't know how to fix a problem in my life is a pretty big assumption. If I don't have an answer and need help, I go to people who have the real answers.

When I was much younger, I was insecure enough to listen to what everyone else thought. So I gave up on music after being told I didn't stand a chance of making it, because so few people actually did. I believed people who had no knowledge of the industry, or even of music in general. I did the same with my writing for a while, too, until I realized those people had no clue what they were talking about.

Naysayers derailed my life plans for a very long time, because I allowed myself to believe them. But when I finally got to the point where I no longer cared what those people thought, I realized I needed to listen to the people who knew exactly what they were talking about. I listened to published authors who were friends of mine, and became a published author myself. My books have done better than I expected, considering what people used to tell me.

When I was finally ready to go back to music, I decided to take lessons from someone who knew what they were doing. I needed an expert. A heavy metal rock star. Which is exactly who I got. If you're a guitarist, Michael Angelo Batio probably needs no explanation or introduction. I asked him for private lessons, and since the first lesson worked out well, we've continued them since April. He's offered to solo on one of my songs, so that's going to be an awesome experience for me, and he's helped me so much with my confidence (not to mention my playing). Michael's an amazing teacher, and he's been super nice to me.

But that's the difference, isn't it? Getting advice from the people who know what they're doing can make all the difference. Especially if they encourage you. I've been lucky in recent years to have the right people in my life, encouraging me to follow through on my dreams.

My husband has been terrific from day one. He never doubts me, and that alone makes me feel like a success. He's never laughed at me, and most partners would have, I think, when their late-forties wife says she's starting a metal band. Instead he wanted to join. He's supported my dreams in every way.

My past catches up with me a lot, though. The trauma I endured as a child will never be gone. I was changed, inside and out, by physical, emotional, and sexual abuse. The latter lasting about nine years. The two former lasting two or three decades, depending on how you look at it. There is no way to forget all that. I recovered from the sexual abuse, despite being sensitive about people talking like sexual predators. I think most women are, though. Friends will unknowingly echo things without thinking about what they're saying, so I'm left feeling like I have to say something about it, and it puts a strain on my friendships.

Right now I'm going through situations with a number of people in my life, and I'm having a hard time coping with all that. It gets to be too much, so I drop out of socializing entirely. While I've been pretty verbal with my husband (with occasional exceptions) I haven't been speaking to anyone else. I don't make phone calls, no matter how much I love someone. Phones freak me out. I consider them a necessary evil when I have to yell at a company for lousy customer service. The only person I speak to, verbally, other than my husband, is Michael. It's surreal, I know.

Fear of a deadly pandemic does not help. My daughter works in a retirement home and I don't think any of them are taking enough precautions, so I bitch at her (in text) for that, knowing at some point she's going to stop speaking to me entirely, but also knowing I don't want her to die. I'd rather have her silence and anger, than have to bury her, if it means she remembers to wear a mask and take all the precautions.

Our Premier isn't doing anywhere near enough to stop the spread of the virus, because he's more interested in doing things for businesses than in preventing deaths, so it's left up to individuals to do what they know is right. The problem is, people aren't yet understanding where this virus is going, and some are being truly stupid about it. We are not going to get the vaccine in time to prevent a horror show, and because a vaccine is on the horizon, people think they can relax their guard. As our Prime Minister has said (and yes, I think he's a tool, too), a vaccine in a few months' time will not help you if you get the virus tomorrow. They're preventative measures, not cures.

A deadly pandemic is actually right up my alley when it comes to what we have to do to avoid getting sick. I'm not a germophobe by any means, but I'm definitely an enochlophobe (someone who fears large crowds). I like staying home, and happily remain there for months at a time. I mean that quite literally. I don't leave for very long stretches, and I've been like that for years. I go out only if I absolutely have to. Right now there is no compelling reason for me to leave our home. My husband goes to see his son (even though they remain physically distant and wear masks, they still hike together nearly every day), and if there's anything we need he picks it up. A doctor's appointment is pretty much my only reason for going anywhere, and those are done by phone mostly now.

The interesting thing about my life is that we recently bought, and moved into, an RV. There were a few reasons for this, but one of them was so that we could do a bit of travelling at some point without having to leave our house behind (the only way I would ever be willing to go anywhere). We still have residence in the form of apartment space, since you need that to keep your healthcare, driver's licence, and insurance, but the last thing we wanted was to be stuck in a crappy apartment in an even crappier city. We enjoy being able to live in the country, where the worst thing we hear is a cranky neighbour and howling dogs (wolves?) in the middle of the night. We don't get sirens and gunshots anymore, which were not good for my stress levels.

I'm going to have some YouTube videos out about the whole thing once I get them edited (takes me forever, seemingly, and I have tons of footage). I'll be putting some on my writing channel, with a focus on the whole off-grid living aspect to things as I put in solar panels and an incinerator toilet, etc. For my music channel (available here, though it doesn't have much on it yet) I'm going to be showing another side to RV living, where we get to travel to various recording studios in Canada, as well as Canadian guitar luthiers. I intend to record in the studios we visit, if there's a song we're currently working on, so there will be footage of the recording process, as well.

None of that will happen while the pandemic is raging, of course, but waiting for the vaccine gives me extra time to practice and build up my music following online in the meantime. It also gives me more time to prepare for the eventual day when I have to perform live (terrifying thought). I'm planning to do a bunch of livestreams on YouTube while I have no fanbase, just to get used to the concept. It should be interesting to see what goes wrong there. I haven't been getting along well with technology lately, and seem to have become something of a luddite; hopefully I can figure it all out without a fatally-embarrassing delay.

As for my writing, well, I have quite the ambitious project on the go, so you'll have to bear with me. One happy reviewer was hoping for another book showcasing a couple who appear in book three of my trilogy (Salvage Rights, it's called), but I was already planning another trilogy that connects to the first one so they will not be disappointed. The characters they liked will be prominently featured.

And that's not even the ambitious part. I've got another series in the works, and it encompasses thousands of years of human history, so the research has been complex. I have some help with that, since my husband has a degree in social anthropology. Not only does that mean he understands human culture, but he also understand how to do proper research. I've got a video interview planned with him that I'll be sharing on my writing channel, talking about the research we do.

If you're curious about the writing channel, you can find it here. It's about writing for a living, so I've got videos on there about publishing, editing, etc. I was supposed to have a tour of the Diefenbunker up a long time ago, but the pandemic has prevented that, too. I did provide a 360 tour someone else created, which is what I used to help me visualize the Diefenbunker while I was writing Salvage Rights. I can visualize my own mental creations just fine, but I needed the research to be accurate for a real place.

For now I'm going to keep practicing, and also get back to my writing routine. Hence this blog post. I've gotten out of the habit of writing all the time, but my ideas are starting to clutter up my brain again. It's time to get them written down. I haven't written much of anything other than e-mails since I published Salvage Rights in March (right after they announced a global pandemic...lovely timing, that). I do have a couple of chapters done for the newest books, so they're in the works.

The song I'm recording with Michael is called So They Say, and it's about my musical journey, so it's a very personal song on a variety of levels. It will be out pretty soon, so I'll let everyone know when that happens. I hope you're all staying healthy and safe. (And reading plenty of books & listening to lots of music, of course.) I'll talk to y'all again soon!