Stand Up Against Anti-Vaccine Fear, Uncertainty and Doubt

I recorded a video message tonight; it can be seen on Facebook. This was my script:

Hi, Alex here. I’m an autistic woman from the UK and I want to talk to you about some people who are a very real threat to the health and well-being of autistic people, especially children, and also many in the wider population.

This threat, this very real and growing threat, is the anti-vaccine movement. With their leading figures like the discredited, struck-off former doctor Andrew Wakefield and his associate Polly Tommey, and radio talk show host Robert F. Kennedy Jr., they are pushing a message of fear, uncertainty and doubt at parents.

These parents are often drowning in a sea of conflicting information about how best to protect their children from all the risks of modern life. They’re not experts, how could they be? Scientific fields are so broad in today’s world that no person could possibly take it all in. So we rely on experts to advise us. But how do we know which experts to trust? Who is genuine?

Well, one way to spot the frauds is that what they tell you is all about fear. Everything they say is loaded with scary terms. Like “vaccine damage or injury”, “brain damage”, “mercury”, “toxins”, “crisis”, “adverse effect”, “autism epidemic”. They want you to think about these words and phrases every time you hear vaccines mentioned. They want you to be afraid, to doubt. They want you to distrust the real experts, the reputable doctors and scientists. The ones who haven’t been stripped of their licenses, who haven’t had their fabricated research retracted because it was found to be fraudulent.

So these frauds, these quacks, they weave their web of lies around this centre of fear. They tell you vaccines cause autism: they emphatically don’t. They tell you there is an autism epidemic: there isn’t. We’ve just made the description wider so it fits more people, and we’ve got a lot better at identifying it. Think about it: how many people my age had even heard of autism or Asperger’s Syndrome growing up? I know I never did. There was no way I could have: Asperger’s Syndrome wasn’t even a diagnosis in the DSM until 1994! I was in my 20’s.

As I said, I’m autistic. I have many autistic friends. Some very, very dear to me, who I love very much like Fiona O’Leary and Emma Dalmayne. Others are simply good friends. We are a community: autism forms a strong bond between us. We support each other. And we don’t see autism as something you can separate from the person. We are who we are because we are autistic: it’s an integral part of us. It’s not without its problems. The world, or at least the human part of it, is not very well set up for our needs. We’re a minority and like other minorities such as those who rely on a wheelchair for mobility, our access needs are often not met.

That doesn’t make us lesser people. But if you listen to the anti-vaccine crowd talk about autism you’d think we were pitiful, tragic, broken people. Because that’s the language they use about us. It’s dehumanising! How would you feel hearing yourself described like that? Because that’s how it makes us feel too. That’s how it makes autistic children feel. People who describe others as basically subhuman, they are doing what the Nazis did to Jews, to the disabled, to justify exterminating them. Words like these harm us, using them is an act of violence towards us. It’s abuse. So you can understand why we get angry when we hear it directed at us.

I’ll say it again because it bears repetition: there is categorically no link between autism and vaccines. There is not one scientific study that shows any link. That is a fact: you can get a list of the published research online. You can check it yourself. That’s the thing about facts: they have evidence to support them. I don’t have to instil fear in you to get you to come round to my point of view because it’s more than just my opinion: you can go and find the evidence that supports what I’m saying.

And so it is with vaccines. No other category of medicines is as rigorously tested or documented. How they work is very well understood: more so than many painkillers such as opioids. And speaking of painkillers, they kill more people every year than any other drug apart from tobacco or alcohol. Would you worry about that if your doctor prescribed them?

But no, for some reason these people want you to worry about vaccines. Vaccines that prevent uncounted deaths and chronic illnesses all around the world every year. Vaccines that do such a good job that many people have only seen cases of these diseases in the media or the history books. We have forgotten what these diseases are really like. How many people today are confined in an iron lung in hospital for the rest of their life because of polio? How many siblings did you lose to measles or rubella?

We’ve forgotten that these diseases are killers because thanks to vaccines we no longer see them all around us. But if we don’t maintain the high rates of vaccination they will come back. High rates are vital: there’s something called herd immunity. Basically, when enough people are vaccinated there is only a very small chance of a disease carrier meeting someone who’s not protected. Vaccinated people form a barrier preventing the disease from spreading. But when rates drop, the disease gets passed from person to unprotected person, and suddenly there’s a bunch of carriers and a massively increased chance of an unprotected person encountering the disease.

Because vaccines can’t protect everybody. We have to protect enough people, and then the babies who are too young, or those with compromised immune systems will be shielded by those who have been vaccinated. People who could be vaccinated but refuse are incredibly selfish: they might feel they have a right to put their own lives in danger but what right do they have to increase the risk to everybody else?

It’s like saying you have a right to fire a gun. Okay, but not in the middle of a shopping mall. Not if you’re around other people. And it’s the same if you’ve refused to be vaccinated. You have turned yourself into a public health hazard. If you then mix with other people whose level of protection you don’t know you are directly putting their lives in danger. That is dangerous and irresponsible.

And that’s the behaviour the anti-vaccine movement promotes. By spreading their lies they make people who don’t know any better fear vaccines. They talk about vaccine injury as if it’s commonplace: it’s not. Yes, it happens, but only rarely (as in once every ten thousand or hundred thousand vaccinations). Reactions to vaccines happen more frequently, but in most cases that just means it’s a bit sore where the needle went in. Yes, that’s an adverse reaction and as such gets listed on the insert. But it’s trivial and you get over it quickly. And even the more severe reactions hardly ever last long-term.

Which is exactly what you’d expect from a medicine that has been extensively tested and used to treat, typically, millions of people. Another thing you probably don’t realise about the adverse reactions on the medicine insert: they don’t have to be proved to have any connection to the medicine. If I got a flu jab and a week later went out drinking I could report that I suffered nausea after the vaccination and it would be counted even though in reality it had nothing to do with it. That’s the reality of how these reactions are reported: they are just things that happened within a certain time after being vaccinated.

The thing is, even if these fictional figures and statistics invented by the anti-vaccine movement were true, which they’re not, there would still be many, many times fewer injuries and especially deaths than would be caused by diseases if we didn’t vaccinate. So looking at it rationally, even if vaccines were dangerous they would still be a hell of a lot safer than catching the diseases. The anti-vaccine case doesn’t hold up at all. No wonder they have to resort to fear, uncertainty and doubt.

Don’t fall prey to fear. Don’t fall prey to the lies from these anti-vaccine frauds.

My name is Alex. Thank you for listening.

Hair-trigger Sensory Hell

I’m sat here writing this and my focus is everywhere, darting around the room like a frantic animal seeking escape. I’m twitching, every little sound makes me jump.

So many sounds. There’s no escape. All outside my door here. All threatening. I’m terrified. I hear a bang (something dropped?) and scream! I’m alternating between holding my head in my hands and sobbing, and the rapid breathing of a panic attack.

My headphones don’t help. They don’t cancel everything. And even if they did I still feel the vibrations.

Literally. Every. Sound. I’m a receiver with the gain turned up way past maximum. There is no escape. No way out. I’m flapping my hands, I’m repeating, over and over and over and over and over and over, “Stop it! Stop it! Stop it!”

And it doesn’t stop. I know how this ends. I’ve been here before. This is overload. Population one. My needle is pushed against the stop and every tiny increment is testing the strength of the fuse. It will blow.

I don’t know when. Maybe not even today, but at some point it will go. And I will be in meltdown. I feel it: some elements are leaking past my barriers. I’m trying to suppress it because I have to keep functioning. I have to keep going at any cost.

And I know that’s foolish. I know that the longer I strain to delay the inevitable the bigger the crash. And I still do it.

I’ve reached a lull. A brief spell where I can let the tension I hadn’t even realised was in my body dissipate. When I can breathe slowly and deeply. When I can rebuild my strength ready for the next assault.

Sensory overload is not something you get to switch off when it’s inconvenient. It usually comes on with a vengeance at times of stress. Talk about kicking you when you’re down!

This one has been building for a long time. Over months. The stress is why I’ve referred myself for counselling. I can’t write about it, not now, not yet. I’m not able to face those demons today. But one day, hopefully, I will.

P is for… Other People

When I first came out as trans there were a lot of things I had to think about. Getting used to my changed name, referring to myself as the correct gender, preparing myself for prejudice and abuse from any person I encountered in case they were hostile. On thing I didn’t think about: using the bathroom.

Because who thinks about that, right? You need to pee, you go. Simple. It should be. But there are always those few people who feel a need to stick their noses in to something that is none of their business.

Of course, they are always at pains to point out that it’s not them that has a problem with me using the bathroom for my own gender. Oh no, they are worried that some imaginary other people might take issue with it.

And then there are the real far-out weirdos. Now, I don’t know what they get up to in public bathrooms, and for the sake of my peace of mind I’d rather not find out. But regular people like you and me only go to the bathroom for a couple of things. To use the loo or just to freshen up.

Anyhow, these strange people like to fantasise about male rapists entering women’s bathrooms and attacking women. And children! Yes, it’s not common but it has happened. And they seem to think that the chances of this occurring are affected by allowing trans women to use a gender-appropriate bathroom.

Yes, you read that right. They think that allowing all women to use women’s bathrooms makes men more likely to commit attacks in those bathrooms. Now I don’t know what fucking planet they’re from but here on Earth that doesn’t make any sense whatsoever.

What does make sense is that these people are transphobic, bigoted assholes, but afraid of the backlash if they come out and say so directly they hide behind a fiction of protecting women (and children) from an imaginary threat.

If they really cared about children they would care that trans children commit or attempt suicide at alarming rates largely because of discrimination and lack of acceptance by people like these assholes.

If they really cared about women they would care that trans women face disgusting levels of discrimination, harassment, assault and murder because of a lack of acceptance by people like these assholes.

They don’t care. It’s just an excuse so they can behave like assholes to trans people. Particularly trans children and women: they don’t seem to realise non binary folks or trans men even exist.

So if you care at all about people getting treated fairly and with respect, rather than being discriminated against through prejudice, be open about accepting and supporting trans people. And, for fuck’s sake, just let us go piss in peace.

The First Time

Once again it’s Valentine’s Day, when young lovers exchange tokens and thoughts turn to romance. Valentine’s Day, day of Hallmark cards with trite rhymes repeated in thousands of homes, and wilting flowers bought as an afterthought from the petrol station on the way home.

Oh my, I’m a cynical, old woman, aren’t I? So long in a marriage that the only sparks are static when I take off my dressing gown and go to bed, cuddling my fluffy penguin. That’s not a pet name for my wife: I literally mean a fluffy stuffed toy.

But even people as old and decrepit as us were once in the first flush of youth, and Valentine’s Day with its symbols of love speaks to the surging of life with the first stirrings of Spring.

And the young certainly feel stirrings and surges! I know I did. No more beating around the bush: I’m talking about sex.

Do you become embarrassed when the subject of sex arises? Become coy at the thought of talking about it, never mind actually doing it?

Why is that? What feelings do you associate with the idea of sex? Have you been taught that it’s somehow dirty or sinful? That “good” girls (and boys, but mostly girls) don’t talk about it? Don’t think about it? And certainly don’t go out looking for it!

Well, fuck that! Sex has two purposes. The one you probably got taught about at school is procreation: making babies. But did they tell you about the other reason? The big reason? The reason why so many people have so much sex? It’s because it can be immensely pleasurable.

Pleasure. Joy. Ecstasy. Bliss. Fun. Now, if that’s not a good reason to do something I don’t know what is. I’m not here to try to teach you how to have sex, when to have sex, or who to have sex with (if anyone: it can be just as enjoyable flying solo).

No, I’m here to promote a positive attitude towards sex. And an important part of that is destroying the myth about it being something special, or precious. Ditch those thoughts: it’s not. And virginity? It’s bullshit. Just a crock of shit cooked up to try to control women.

See that body of yours? It’s all yours. Nobody else’s. There is not one single other person on this whole planet who has any right to tell you what to do with it. Bodies are great: endlessly fascinating. They make funny noises. They can look weird; they can look amazing. And you can play with them. In fact that’s part of the fun of having a body: playing with it. Doing stuff with it that feels great.

Sex is one of those things that can feel great. And really it’s not any more exotic than another activity I find pleasurable: eating. Now, when I first started eating I was very young. Far too young for sex (that came later when my body had developed more).

I wasn’t very good at eating when it was all new to me. I don’t even remember my first time. For a long time it was just messy and awkward, but kind of fun too. And you can turn it into a game: play with your food. I might have forgotten my first time but over the years I do recall the best times.

Sex is just like that. When you stop thinking of it as some special, magical activity and just take it as it comes you can start to relax and have real fun with it. Like most activities you get better with practice. Your first time will probably be messy, awkward and even uncomfortable. There’s no reason to expect it to be perfect or even memorable. Would you expect your first time riding a bike to be perfect? So why set unrealistic expectations when it comes to sex? Hey, you’re new at this: you’ll get better. Practice.

Focus on the things you like. Experiment, try new stuff, see what you enjoy. Always be in control: it’s your body so you decide what happens to it. If you don’t want to do something or you don’t like something, you get to say no. You decide to try something and change your mind, you get to say no. You set the boundaries. That’s the essence of consent: nobody does anything to you unless you give permission. And you can withdraw that permission any time it suits you, for any reason.

Anyone at all who doesn’t ask your consent, who doesn’t respect your boundaries, is in the wrong. There is no middle ground, there are no grey areas (especially not fifty shades of them). Sex without consent is rape.

I’m a great believer in exploring your own body, discovering what turns you on or off, what sensations you enjoy. The better you know how your body responds to various stimulation, the more able you will be to talk to a partner about it and let them know what you like. And hopefully they will have done the same and you can both be off to a running start.

The bottom line is that sex is not a mystery. It’s a normal bodily function, like walking. Although most places it’s probably best to keep the sex indoors. Or at least out of sight of other people. Walking in public is fine though.

So get out there, or stay in bed, or whatever suits you, and have more sex. Have different kinds of sex. On your own or with a friend. Also, be responsible: think about the risks and take steps to minimise them. After all, you don’t want anything to go wrong. It’s like making sure you have appropriate gear before going walking in the hills: the sensible thing to do. Yes, you could try to walk up Ben Nevis in a T-shirt in the middle of winter but bits would probably drop off and I don’t think you’d make it back.

Above all, approach it with an open mind and a positive attitude. Even joke about it. (Don’t penises look funny? Imagine one with googly eyes!) Who knows, it could become your favourite hobby! Or even a career! Sex is not special, but it can be great fun. And fun is generally worth the effort.

Confidante

When I was younger I was dismissive of people who saw therapists. “What’s the use in that?” I used to think to myself. I didn’t get it at all; it made no sense.

But now I think I’d like to have somebody I could talk to about anything that was on my mind without worrying about being judged or that it might affect a relationship with a friend.

I need a confidante. Somebody to listen while I pour out a stream of thoughts from my turbulent mind. I’m not looking for answers or advice so much. But somebody who could prompt and guide the process would help.

I’m not seeking offers here; I don’t want to have to worry about how much I open up, about confidentiality. I need the reassurance of a relationship that is entirely professional and governed by professional standards.

I guess I’m in the market for a therapist. The younger me would be aghast.

The bottom line is that I need to open up about certain things. Keeping it all in is becoming harmful. It’s making me more vulnerable to depression.

There are some things from my past, some from my present. Things I’ve locked away, things I try to avoid. Things that worry me and others that absolutely terrify me. They’re not going to go away, but just maybe I can learn to live with them.

Selling Sanctuary – The Poison of the Anti-Vaccine Cult

With diagnosis rates in the United States as high as 1 in 68, there are a lot of parents who get told their child is autistic. What they don’t get told is what that means. They are left to find information by themselves.

This is a vulnerable time. These parents are faced with a huge amount of unknown. The way they had imagined their child developing, their hopes and dreams, lie in ruins. They literally do not know what to do, where to turn, who to go to.

Many of them, through luck, find supportive groups where they can talk to families who have gone through this emotionally turbulent experience before and can relate to them, educate them, and thereby help develop understanding and acceptance for the autistic child.

But a few fall into the hands of a much less wholesome crowd: those who believe against all the evidence that autism is the result of mythical “vaccine damage”.

Make no mistake: the anti-vaccine cult might spout platitudes about how they are protecting children but the reality is far from that. This is how they operate.

They start by telling parents that their child’s condition is their own fault because they allowed them to receive “toxic” vaccinations. They play on the guilt and fear, supplying literature that paints a terrifying picture using a mix of lies and misrepresentation of facts to provide the suffering parents with an excuse, an external “bad guy” to transfer the blame to, and so assuage their own guilt.

They basically tell the parents that, yes, they did wrong, but if they follow the anti-vaccine path they can save others and become saved themselves. Yes, it is exactly like religious cults.

  • They claim to have all the answers.
  • They claim that everyone outside the cult lies, that they have been corrupted.
  • They attack or otherwise punish people who stray from the beliefs.
  • They manipulate people through fear and guilt.
  • They have charismatic leaders and promote personal loyalty to the leadership.

In the eyes of the anti-vaccine cult members, the big bad is so-called “Big Pharma”, a conspiracy involving every drug company and hundreds of thousands of scientists worldwide. All these scientists are supposedly being paid to fabricate studies and show that vaccines are safe.

You can see how implausible that is: companies like Novartis, Pfizer, Sanofi, AstraZeneca all collaborating, working together to promote vaccines even as they compete in every other area. And they are paying huge bribes to all those scientists, not one of whom has ever come forward and spoken about it. Literally hundreds of thousands of people involved worldwide and not one breaks the silence. They are all keeping the secret.

Yeah. As if that’s ever going to happen, right? HBO can’t even keep the upcoming plot of Game of Thrones secret!

But, if you’ve been carefully prepared mentally and led up to the revelation about the conspiracy you aren’t looking at it critically. You have been made to feel that your child is broken and it is all your fault. You want answers. You want someone to blame.

And that is when they plant the “Big Pharma” story in front of you, and you grasp at it like a drowning man.

You become invested in the belief system, in the story, because it gives you an excuse for your sinful actions: you were tempted by the devil in the guise of Big Pharma and their doctor shills.

But you are offered a chance at redemption: support the cult, spread the word, be an anti-vaccine evangelist and you too can save people from this evil.

Because it is a belief system, because people are sucked in so deeply and become so personally, emotionally invested in the cult, it is incredibly difficult to get through to them. All but impossible to reason with them.

If you say anything that contradicts or questions their beliefs you are automatically putting yourself on the side of the devil and are to be fought. There is no room for the critical thought that underpins rational behavior. These are people on a mission from their god and any obstacle is the devil’s work.

I don’t know if the leaders believe what they are espousing; I suspect they probably do but that is irrelevant. They are running a cult, plain and simple. The lack of overt religious terminology and its substitution by pseudo- and fake-scientific mantras does not make it any less belief-centered than any other cult like Scientology.

These anti-vaccine leaders are luring well-intentioned but naive parents astray by feeding them a diet of lies and half-truths. Instead of helping their autistic children, they end up harming them because the whole belief system of the cult rests on convincing parents that their children are damaged. That autism is a burden, a curse, a judgement from on high against them.

That does not lead to an environment where the children are accepted. And I haven’t even touched on the very real harm done to entire communities when a substantial number of children are unvaccinated. That is a fertile ground for the spread of preventable, potentially-fatal diseases like measles, mumps and rubella.

Because of the success of vaccination programs the effects of these diseases are not as well-known today, and most people think of them as relatively benign. But they are not. They cause lifelong health problems and death in a surprisingly high number of cases. Much more serious consequences with much higher rates of incidence than the rare adverse reactions to vaccines.

So if you really want to know where the poison is to be found, it’s in the mouths and minds of the anti-vaccine cult. Don’t let more people fall victim to them.

Activism and Alienation – Why I Feel Excluded

I’ve seen a trend over the years and it’s not a good one: activism is increasingly becoming a bubble, an echo-chamber where the only people listening are fellow activists.

There are reasons for this and one of the most telling ones is that the message is not reaching the audience. How often do you read an article or listen to a speech by an activist? If you’re not one yourself, the answer is probably close to never.

The big question is why?

For me (and I suspect for others too) there are a couple of elephant-in-the-room type problems. Activists seem to speak a different language, they bombard us with academic jargon and unfamiliar terms. Even the words that we recognize have subtle shifts in meaning so that understanding remains elusive. And then if we don’t use their preferred terminology or accept all of their ideological rhetoric as the gospel truth we get attacked. To put it simply, we are excluded.

What a great way to convince people to listen to you! Yes, that is sarcasm.

With far too many activists it’s a case of “my way or the highway”. You either interact with them entirely on their terms or you get bullied into submission or retreat. And most people won’t submit, so the audience dwindles until the only ones left are those who echo the activist’s ideology.

What’s the point of being an activist, of fighting for social justice, if in the end you are only preaching to the choir? The congregation has gotten fed up with your hellfire and brimstone and the pews are empty.

You’ll notice the overt religious imagery I’m using here. That’s deliberate. Running into an activist has a lot in common with running into a fundamentalist preacher. They are so convinced of the rightness of their beliefs that to question them in any way brings down their full wrath.

 

 

Last weekend there were the largest protest marches in US history, responding to the inauguration of Donald Trump as President. These protests were instigated by women in response to fears about the actions and intentions of the new administration.

But what were the majority of posts I saw on Facebook saying? Were they talking about the historic scale of the opposition? About the importance of standing up for rights that are visibly under threat?

No, the majority of posts I saw were basically saying that the majority of those protesting did not have valid concerns, that they should be ignored for not doing things the way the activists would prefer them to.

That because they were marching for reasons that meant something important to them as individuals but did not explicitly seek to include other groups they were somehow hostile to those other groups.

Now I’m not saying that ignorance and privilege are right or fair. But they exist. And unless activists engage with these people they will continue to exist. Shaming women who believe that sexual assault is wrong and got behind the “pussyhat” because “not all women have a vagina” is a shitty thing to do. For a lot of women the vagina (and associated organs) is something they strongly identify with as symbolic of their gender. Denouncing this as binary gender essentialism, or reducing people to their genitals doesn’t change the way so many women feel. It might not align with the activist’s beliefs but that doesn’t make it less real.

The culture of calling out and shaming people is wrong. It’s the tactics of the oppressor, the bully, of those we are trying to fight. It doesn’t advance the cause of understanding or acceptance. It’s just asking for them to turn around, say “Fuck you!” and decide you’re irrelevant. You might get kudos from fellow activists for being “on-message” but you’ve been counterproductive. You’ve stopped someone from listening to you before you even explain your point.

Bullying people into complying with your wishes and demands breeds resentment and opposition. If they comply they do so under duress, and as soon as they feel they are no longer under scrutiny they will actively undermine you. It’s about hearts and minds, not about coercing people by threat.

If we truly want to achieve equality, acceptance, understanding and all the other good stuff we need people to come to us willingly. Every person we alienate is a potential opponent, every person we support is a potential ally. We have a lot of opponents and some of them are very powerful. We need allies and supporters. We need to include them, not shame them and drive them away. Once they’re in the door we can educate them, teach them why some of the things they do might be problematic.

I’ve stopped interacting with activists online. It’s a toxic environment, like traversing a minefield where the slightest mis-step leaves you injured. I’m excluded, and I’m saying this as an autistic trans woman who ought to be feeling supported by rights activism. But I don’t feel supported. I feel threatened, unsafe in those spaces. I feel I have to watch every word I say or write, second-guess everything. And I’m not willing to do that – it takes energy I can’t spare to avoid any mistake that will bury me under an avalanche of bullying verbal assault.

I support many of the aims of activism for rights, but too many of the tactics are actively dangerous to my health and well-being. That’s why I am alienated. That’s why I am excluded. That’s what activism is getting wrong, for me and for others.