Wednesday, July 4, 2018

My rules for living as a neurodiversity advocate

CW: Annoying ableism, and other issues like mental health etc.

I've been struggling with an issue in my advocacy and even in my position as a community leader for a while now and it boils down to two ideas that I want you to keep in the back of your mind while reading this:

Accountability and self care. 

In a community that embraces neurodiversity we're always poised to slap back at ableist and stigmatising comments and responses to common everyday issues in the lives of the people we work and live with. As advocates we want to deconstruct the shame and remove the social pressure to conform that was so damaging to us in our own experience.

We want to make it right for everyone living after us.

But often times I see us making an important mistake in how we address one very common problem that is frequently bringing outsiders to the neurodiversity movement to our door banging and shouting, or worse yet...concerned and earnestly insisting on intervening in the life of a neurodiversity advocate:

How to behave in a adult, responsible, regulated and productive manner. 

As a survivor of various kinds of abuse, mental and physical health problems, drug use and also as a neurodivergent person it was always easy to say to people "Just understand! We can't HELP it!" and get huffy.

The truth is, they have a point, we know it, and we hate needing to explain it over and over to those not yet in the know.

It is our very wounds and traumas around ableism that often blinds us to the fact that even if you say on the one hand "I have different strengths and weaknesses. Those weaknesses should not be shamed or ridiculed and I don't deserve to be pressured and victimised for them."  there is truth in the statement that you're still a carbon based life form and certain skills are necessary for your survival as an organism. When parents ask us this question it isn't necessarily coming from a place of ableism. They may genuinely be fishing for information on how to support their autistic child in overcoming these issues without being an asshole.

Let's try to not be assholes ourselves and judge them for asking these real relevant questions in a hamfisted way. It doesn't help the young people we are fighting for one jot if their parents get run off every time they ask a stupid question in a stupid way and we all lose our nut at them. Try to hold a little bit of space on this k? THANKS!!

Now for the allistic allies who are all still confused and keep asking me OVER AND OVER how it is I propose their child to live in this world without something to modify their autistic behaviour..... PLEASE hear me well:

Neurodiversity culture is not a request for a licence to enable a victim complex or an excuse for letting severely disabled autistic people simply rot in a ditch

So..... unless your philosphy of life can defy the second law of thermodynamics, there are certain things a body has got to do to live, whether it's a disabled or neurodivergent, or not. Neurodiversity advocates are not dumb. We know this.

Yet this is where many parents critique us most harshly in the neurodiversity movement. Our often unclear response to this issue gives them licence to wander off into the abusive arms of techniques like ABA that promise "independent living" and "life skills" or "behavioural control" at the bargain basement price of our dignity, sanity and health.

I'm here to set the record straight. Neurodiversity does not mean we just let the chips fall where they lie and consequences be damned. It just means that we do things in a way that is not standard, and may require some adjustments to our lifestyles, and a lot of patience while you receive an education in how this different worldview works. 

This piece on Sartre's concept of "bad faith" highlights a common psychological response to things we don't like admitting to ourselves.

Now with that in mind, dear neurotypical allies, please understand that we are not, by demanding equality or accommodation, operating from a position of "bad faith".

It is not about enabling a victim mode or finding an excuse not to have to meet the necessary demands of our existence. Implying that we are is going to get you a sharp kick in the metaphorical teeth every time you bring this up so.... PLEASE STOP DOING THIS.

For a long time I was pretty stuck on this issue of explaining how neurodiversity advocates do independance and become responsible adulting people that live fulfilling and happy lives.

Then I decided to pen this post teaching the rules I have made for myself about how to be a successful neurodiverse adult. Allies, please pay attention.

Rule number 1: You are allowed to have "unreasonable" boundaries.

Now first off, I need to validate my invalidated ones. "I can not do that" Is a perfectly valid response for a disabled or neurodivergent person to have when confronted with something a neurotypical or ablebodied person is demanding you should be able to do. This is because being different means there are literally things that neurotypical or ablebodied people CAN do that you, as a neurodivergent or disabled person CANNOT (or SHOULD NOT) do.

And that's ok.

Remember that story about a fish being told it's should climb a tree? Well you can tell anyone telling you, the fish, to climb that tree to sod off, and you do not need to feel guilty about it.

Know when to tell people to just take a long walk off a short plank, and do not punish yourself or let others shame you for doing this.

If you spend your life climbing trees for people, you'll never get to swimming and actually having a fun life.

And here, for reference, is a neurotypical person enacting REASONABLE boundaries, just so you can get a feeling for where that line lies.

Say no to what you cannot tolerate, so you can say yes to what you love and value.

Rule number 2: Choose your battles.
I know we just want to tell everyone to sod off with their demands and expectations and lose our nut at them when they are making ableist demands. Unfortunately frequently we only end up beaten, bloody, exhausted, hungry, tired and alone. That's shitty. Ableism hurts people.

Sometimes battling it hurts double, and the gains are slow. But invest in your good allies. They are truly worth the effort.

Deciding when it's worth it and when it's not determines if we survive the fight or succumb to the wounds of battle - and our good allies are the ones who will carry us off the field when we fall so do the work of having them guys, it's worth it.

Neurotypical and ablebodied people don't KNOW you can't climb the tree. Sometimes you are going to have to bloody climb the damn thing just to tell them that "Uh... hey... I am a fish, did you know, I'd prefer if we sometimes did some things in the pond you know?"

As someone who frequently abseils ableist trees to educate neurotypicals and ableist people it is strangely rewarding to watch their faces light up with mixtures of horror and awe when they realise a fish just climbed a tree to tell them to please stop telling fishes to climb trees. It is what I live for. I am probably a masochist, because advocacy is definitely a form of self torture....but sometimes it does get triggering, which is why we come to the next rule.

Rule 3: Tolerate injustice and inequality (at minimum).

You gotta learn to take it on the nose sometimes, but know when you are too tired and weary to take any more. At that point, set a boundary.

But test your boundaries sometimes. Expand them as you grow in strength or heal yourself. If you go down with every punch, you're done for. You are going to need to educate ableist people and negotiate some sort of way to live in this crappy ableist world. You need to hold an internal structure in mind with a clear vision for the future you're building because without that you're not goint to be motivated to to this work.

This is tiring, messy work. Unfortunately it's needed work because unless you have a blue Genie about to fix our messed up ableist world you, and your children, and your children's children will still be doing this work till your dying days. But choosing your allies carefully is just wisdom, so don't feel the need to burn up spoons on performative allies and sealions.

Rule 4: Pragmatic advocacy is the only sane choice on a tight spoon budget

Advocacy logic is frequently NOT pragmatic. It is idealistic and philosophical. I does not make tea, or bake a loaf of bread. It sits upon a rock and pontificates or analyses.

However you are not a statue of the thinker. You have to eat and live in a three dimensional world with real constraints and unfairness and injustices.

Sometimes just rolling with the ableism is the only way to actually live long enough to make change possible. But if you're on a spoon deficit you cannot afford the luxury of just living it large.

So do work on becoming more resilient to the stress of being exposed to ableism during advocacy work, but definitely learn how to just let it go when that's expedient. Don't judge yourself (or other advocates) for not taking something on. See RULE ONE.

Get over it. Get on with it.

Rule 5: Be real

Most people you meet won't get you. That's ok. But if you're real, and you stay real even under pressure, you will find a few people who will follow you to the ends of the earth. There is nothing more powerful that watching someone who you know is in deep struggle and imperfection ace a landing they worked on for weeks. Don't feel the need to be perfect, let people see your struggle. It's part of what makes your achievements admirable and will grow their respect for you and give them room to share their own vulnerabilities with you which helps people feel connected and less lonely.

Authenticity builds connection and strengthens communities.

Rule 6: You are always responsible for your reactions, even when you're ill

This one is a riff off of drug rehabilitation culture. The long and the short of it is that although allowance should be made for your challenges, at the end of the day the responsibility of becoming a person who is living harmoniously within your environment REMAINS WITH YOU. Whatever crappy hand fate dealt you does not alter this.

Nobody owes you space in which to be abusive towards them. You are still responsible for doing whatever you can do for yourself, by yourself. Getting up and going out to get every last drop of the help available that you need to be a healthy individual is ALWAYS something you can do for yourself. What help is available to you may vary from person to person, and how much you can do for yourself may be limited by illness or circumstance, but there is always SOMETHING you can do for yourself. SO DO IT.

Most of the time the reason you are out of control is because you still have work to do on setting your boundaries and keeping yourself within safe functional limits, and no third party can really make that happen for you. See a therapist or speak to a healer or simply sit on a rock and think VERY HARD about your life. But bottom line is THIS ONE IS ON YOU.

We do not hold space for abuse and enabling of self harm.

Rule 7: Being part of my cockpit crew is a PRIVILEGE. 
Choose to place your energy only in the people who form a family who loves and accepts you JUST THE WAY YOU ARE. Be accountable TO THEM ONLY.

This will not necessarily include your actual blood relations. That's ok. Many of us have to lose our relations to gain our families.

Remember that you ALWAYS deserve a place where you are not scared that people will dump you if you totally wipe out. These are the people you need to justify yourself to because they have the commitment to see you both at your best and your worst without wigging out, and they are more likely to have the good judgment to know when to smack you on the nose with a paper, and when to give you a hug and tell you you did a good job.

You are not accountable to society at large, but you are accountable to your chosen community.

Rule 8: Breathe, validate yourself and pull yourself towards yourself
Some days you will be your only ally. You will be all you've got. Believe in your capacity to pull this off. Be brave. Put yourself out there. And remember to give yourself the pats on the back, hugs and comfort you need even when nobody else will.

Rule 9: You have rules that are unique to you
Learning what works for your unique brain is the essence of neurodiversity advocacy and acceptance. We are making room to allow you to do that. You deserve it. You deserve that freedom to have rules that are just for you, that let you live a good life. Don't try to fit into the ruleset of another person.

Rule 10: Adress your physical health issues as a matter of priority,and don't allow yourself to overwork 
Autistic people tend to get diagnosed because they physically and mentally fall apart. Understanding why that happens (1 and 2 and 3 and 4) is crucial to preventing this from continuing to be an issue.

One of the major reasons we melt down is because we are being forced to tolerate pain and illness that neurotypical people would not tolerate, but because we cannot express ourselves or advocate for ourselves we get bullied into just pushing through our stress, exhaustion or pain. This turns into a bad habit of not resting or recovering when we need to - which leads to meltdown.

Being victimised by ableist people all your life to believe that you are lazy, you complain too much, that you're inadequate in some way will cause you to become overcompensatory. You'll work three times as hard on something, maybe only get half as much done and then still feel bad about it if you're working with an exhausted vessel.

Learn to stop BEFORE you're tired. Walk away BEFORE you get irritated or annoyed or upset. Say no even when you think you might have the spoons after all. Save up those spoons in a bank for something big you care about, don't live from pay check to pay check (metaphorically speaking), just making it barely through each day and collapsing into bed.

Neurotypical, ablebodied people don't live this way. If they had to live the way most autistic people do they would commit suicide or end up in a psychiatric ward....just like we do.

So let yourself off the hook. Go to bed. Stop. Don't do more. It's ok. Get some rest. You don't have the same brain as other people who are pushing through and carrying on. Don't try to run yourself like a pickup truck when you're a Ferrari.

Don't hold yourself to that external standard of performance or worth.

Those are my rules!!

I hope some parents or spouses see this and really take the ideas to heart.  You job is to help your neurodivergent friends, family or children to adapt these ideas for themselves because I think it would make an enormous difference to their well-being.

It will also affect the relationships with their children or partners. Helping neurodiverse people learn to protect ourselves against an ableist society, and supporting us in the process of instituting healthy boundaries and best practices for managing or shielding against the stresses of being neurodiverse or disabled in an uncompassionate world can help us be more engaged, positive, relaxed, happy and calm which will rapidly deescalate any hostilities we are showing, and help us prevent meltdowns or other behavioural issues.

PS for allies reading this: 
https://en.wikipedia.org/wiki/Ableism
https://www.youtube.com/watch?v=gtALM4fOy0E
https://www.youtube.com/watch?v=d69tTXOvRq4

Saturday, April 14, 2018

We are all different and that's ok, or Why you should disclose your child's diagnosis to them young




CW: Bullying and victimisation stuff.

On the topic of whether to reveal a diagnosis of autism or ADHD to a child young:

I am personally against hiding any confirmed diagnosis with the potential to affect a child's quality of life, especially if it causes cognitive impairments....and the reason will probably strike you as obvious once I'm done explaining.
When you have cognitive impairments, such as with executive function, you know. You know the way that people who are sober now will know they are drunk later. They won't know WHAT they know, but you know because you live in your brain and it is always part of your awareness.
If no explanation is given you think what you are experiencing IS EXPERIENCED BY EVERYONE. You may misunderstand fundamental concepts explained to you about how consciousness, concentration, awareness, attention, focus, discipline, effort and intentionality works if you aren't told that your experience is not the most commonly described experience.

You also begin to think that you are doing it wrong. That your character is flawed. That you are stupider than you actually are, or that you're missing something even when you aren't. It leads to a certain special sort of pervasive gaslighting, invalidation and minimisation that is extremely destructive to our sense of self.


This causes you to fail to have safe boundaries in place to protect your energy and your health - when you think your best effort is normal and it's actually you burning yourself up like a sun just to do what Joe Soap can do half asleep you are setting yourself up for a lot of stress related health disorders and mental health issues later in life. This is DANGEROUS.

Let's illustrate using an example: Curly hair.

If I wasn't told as a child that my curly hair was natural for me, that my granny had curly hair, that my curly hair is normal for me and isn't at all needed to be straightened of flattened or controlled but is instead beautiful and rich and lovely, I might have been very self conscious about how ...curly ... it is.
I mean I'd watch others combing their hair and begin to feel like I must be doing my hair wrong or something because I can't make it stay that flat and I'm doing EXACTLY the same thing that Susie Q does with her hair at the sleepover but I still look like a golliwog and she's all sleek. I might have thought I was BAD at doing my hair, or that my hair was UNTIDY. I might have started to feel guilty and insecure instead of angry and offended when someone told me my hair was messy.

Or another example: Freckles

A doctor (a resident from central africa who was practicing in our hospitals here and had only READ about freckles in textbooks) once asked me whether my sister's freckles were a hyperpigmentation disorder. If we'd never been raised to understand that ginger people just have freckles (because we do, duh!) we might have had a doctor go on a wild goose chase trying to pin down what the strange illness was that was causing our pigmentation errors....and we'd have walked around telling everyone we had a hyperpigmentation disorder which depending on the context could have caused people to treat us either as diseased pariahs, or possibly mentally ill persons who are delusional and hypochondriac for supposing that freckles are a disease..... And this would develop based on what we were told to expect (which shapes the way we perceive ourselves and our traits).

BUT Hiding a diagnosis from a child isn't empowering the way some people think. It doesn't help us NOT to be told we are different. That is like conspiciously not mentioning the fact that my hair is EXTREMELY red. I mean I can see myself in a mirror....why aren't we talking about this? Is it something bad? .......



You know I'm right guys. This is how we all work.


At best, It is trying to straighten their curly hair, or letting them silently wonder why their hair doesn't comb out right. It's letting them walk around thinking they have a hyperpigmentation disorder or that the fact they are the only red haired child in the family must mean they were adopted.....

At worst it is teaching them to associate feeling sick, dysfunctional, exhausted, overwhelmed, scared, sad, misunderstood and confused - with BEING NORMAL.

You REALLY don't want that. Being weird? I EMBRACE that shit. In the words of Brene Brown, what makes us vulnerable makes us beautiful.
My weird IS MY AWESOME. And that is a lesson my parents DID teach me, alongside the truth of why my mind doesn't work the way other people's minds do.

I was made very aware of the sad fact that because the world doesn't give a rat fuck about us on the institutional level, we may need medication to survive our childhoods and that's NOT OUR FAULT.


That's like our curly hair. Or our freckles. We're RARE. But we aren't a MISTAKE.

Understanding the sad but real fact that statictically neurodiverse people are a minority, that we require different things to be happy and those things are not commonly available and we may get looked at funny for needing them (BUT THAT IS NOT OUR FAULT) helped me.
I still developed a self esteem problem, but that was mainly because my school mates and fucked up teachers used to part the way in the halls to let me through like I was Moses at the red sea, and they hectored me calling me "Stinky" and told me "You must have held up a sieve when your mom threw you with shit" and "You look like stuck your head in period blood" and "You're the laziest child I've ever known". It wasn't because I was told I was different. It was because I was treated differently, and when I didn't know why I thought it was MY FAULT.

Let's face it having things like that said to you still hurts even when you know they are wrong. But at least you cant TALK to people about it in some way that makes sense because there is a vocabulary for you to describe your experience.
Give them a reason. Make sense of the cruelty of others. Tell them the truth. But remind them that DIFFERENT is not UGLY or BAD or WRONG.

It's just the reason there are more than one kind of flower, or all sorts of different birds or trees. It's why we have shoes that aren't one size fits all, and haircolours that arent all one colour, and why we have tall people and short people and why we have different kinds of music or why not everyone likes the same things you do or eats drinks their tea the same way.... because difference is EVERYWHERE when you look for it.

We just tend to forget that the rarerst and most special things in the world sometimes only bloom in the tops of the highest trees in the amazon, or grow in the depths of an ocean vent so hot that no other thing lives there. We are extremophiles. We need special environments, we need our hothouses....but it's because this culture is broken. Western civilisation doesn''t CARE if you need a specific diet like the orchid food for amazonian orchids. It doesn't CARE if you can only grow in places that have a temperature gradient that never varies under your hottest oven setting, or that you turn to jelly when you are brought up from the ocean depths because you cannot live at normal pressure.


It's NOT OUR FAULT.


AND THE WORLD NEEDS US.

Autistic people have a purposeful life too. They have a reason to exist in the ecosystem of earth. We are NOT an evolutionary fuckup. The ecosystem doesn't keep trash on the payroll guys. There's far too many of us for our geneset to be all bad things and no good.

Understanding that we might be like those extermophiles. that we need special environments and special diets and special accommodations to live helps me.
Understanding that extremophiles fulfill niche roles in the ecosystem helps me. They go where no other creature dares to go and grows in untenable conditions so that we may have from the crook of a tree canopy one of the most beautiful yet delicate flowers in the world, the Orchid.
So what if you are a hot house flower? The world should be privileged they didn't have to climb a tree in the amazon to see you!

We really just need to stop feeling so bad about being different, needing support, being sensitive....
Because you are beautiful. Like. All of us are friggin wandering miracles of nature that are fully formed breathing art. We have universes inside of us, and we carry libraries behind our eyes and recording studios behind our ears and we have a band in our mouth and we are extraordinary biomechanical machines that are puppets which dance for themselves by themselves.
That's just NOT OUR FAULT.
It is our ARTISTRY.

Sunday, January 7, 2018

There's Just Us.


(Content Warning:Suicide, Rape, Violence) I want to open by inviting all the feminist naysayers. I solemnly swear to make no digs in your direction. I am not here to punch you in the face with another angry rant. I want you to really listen to me just for about ten or fifteen minutes.


I want the hard line feminists, the ones who are doing the punching, to sit down a minute here too. Please guys. Let's just get a mug of tea and a biscuit and find someplace quiet and talk. Next I want everyone to believe for a moment that everyone else here is a person with a soft heart and a capacity to love and do good. Let's give peace a chance.
The talk I'm trying to have is about why men are shouting out "What About Men!" and "Not all men!" whenever women start a conversation about female oppression.

I think a lot of us are out there just waiting for someone to hit the nail on the head. I hope maybe something I write here today will do that for some of you, because I'm really worried that we aren't making any headway settling these issues. We keep getting stuck in skirmishes around how words are used, or who's the most disadvantaged, or whether all men are misogynistic but in the end when it comes to moving forward we're simply stalled.

This is where I want to tell my story.
My partner, who is a trans woman, has been a window into a world for me for more than half a decade now. She is a deeply observant, kind and nonjudgmental person who sees so much more than I ever could. Her wisdom helps shape who I am. Through the lens of her experience as being raised natally male and then living as a woman she has always struck me as being perfectly placed to speak to the reasons why the sexes seem so perpetually unable to gain ground in ending the battle between them - she's seen both sides of the fence and been burned by them both.

Through her I have come to find myself seated in a place outside of the mainstream narratives on feminism, misogyny, misandry, gender and so many other things.

When she and I started having a discussion about misogyny and why men often have the urge to butt in with "but what about men!" in discussions on female struggle, she said something that gave me pause.

"Men are crying out for permission to speak as much as women are."

I want you to sit with this idea, and really hold it in mind.
To many feminists this seems somewhat unbelievable on the surface. Surely, if men rule the world, they are free to speak as much as they like? But in the experience of my partner and from her observations, this is not the case. I'll get to that a bit later on.

It's true that women go through an enormous amount of abuse and struggle. There's no reason to argue that everything that is said about how bad that is, isn't exactly that bad. In fact, I'd urge my readers to pause here for a moment and embrace deeply how utterly and totally at a mark most women of the world actually are, and how little most of them can do about it. We’ve all seen the statistics for rape and assault of women by now. The latest scandals around sexual assault by men in power is really just bringing home to us how pervasive this really is, and it's terrifying.
This is why feminists are so passionate. We are horrified by the suffering and we want it all to end. Feminists build shelters and start feeding schemes and volunteer in orphanages. We look after our own. And that's really important.
Obviously we need a movement devoted to protecting these vulnerable people and to uplifting the women of the world. That’s not really controversial.

But someplace along the lines we didn't really highlight fully the fact that this abuse extends to men, and that Feminism is for the protection and advancement of men too.

You heard me right. Feminism protects men. I believe sexism causes men to pressure other men not to speak, and men stop themselves from speaking to protect women due to their perception of what their roles are in relationships. Those perceptions originate out of the patriarchy, and it is the patriarchy that feminism is trying to destroy NOT MEN.
Feminism is not a women's movement.

Not at all.
Feminism is about equality for both sexes. It is a belief system centred on ending all gender inequality. I know, having "fem" in the name is unfortunate because it seems to imply it's girls only, but it's just a word and we don't have to get stuck on that. We don't need to go around saying "I'm not a feminists, I'm egalitarian". Egalitarianism is a synonym for feminism. Sometimes people mislabel misandry as feminism. Sometimes people mislabel feminism as misandry. I think we all need to take a step back in each argument on this and remind ourselves that any idiot with a keyboard can call themselves a feminist. That doesn't mean that they ARE one.
Next time before we all start squaring off how about some flaming topic, why don't we check what they are saying against the definition and just establish whether they are in fact part of the group they claim to be, or just a troll trying to chum up the waters by going in under false colours. You know there's been a lot of that lately. All that #fakenews...
Most guys pretty much agree with this idea that both genders should get the same pay, work the same jobs and get the same votes. Right guys? There's really not a lot of you out there advocating that girls should stay in the kitchen whether they like it or not. And I think right now most of you are quietly freaking out about just how prevalent rape is. You feel really frigging angry and you want to start some kind of movement to make it end. You know. Something like feminism. So what are we all arguing about?

It's usually when women start to cry out that men have the greener side of the fence that I think we begin to hit serious resistance.

I argue that belief is based on decisions made while not in possession of all the facts. Feminists are justified in tallying rapes and assaults and murders that women are subjected to and venting their valid and proportionate rage. There is nothing to be said against that. But the most important thing my transgender partner taught me is that the grass is not greener on either side of the gender fence.
Some cultures are worse than others.

My partner's side of the family are the South African equivalent of the Deep South fundamentalists. They have a passion for God, Guns and Gas-guzzler vehicles. This group gets a lot of heat in feminist circles for their patriarchal valuesystem, and they are generally not friendly with LGBT folk either - or at least that’s the stereotype. (Unfortunately in her case it’s not just a stereotype).

Something she knew straight away growing up is that boys don't cry, and if you're depressed or suicidal you "have no business telling anyone, especially the womenfolk". "Womenfolk" talk about these things. Men are supposed to "suck it up" and "stand your ground" and just "double down through the pain".
I grew up in a similar culture, and I'm noticing something that worries me. We seem to have missed the bit where men are killing men at alarming rates too. Suicide is an act of shame and desperation. It is born out of a deep seated feeling of loss of the hope of any future that is worth living for. I think that the violence and death and rape we see women subjected to is literally the flipside of a coin - the other side of which is male suicide.

In the west men are committing suicide THREE TO FOUR TIMES as often as women.(Gender differences in suicide, Wikipedia) The grass really provably isn't greener on the other side. It just looks that way because men don’t cry, and suicide victims can't participate in #metoo campaigns if they are dead. Feminists tend to gloss over a lot of how we feel about things relating to the gender oppression of men when we're writing in public or speaking in public. Doing so is often Troll bait for the kind of bottomfeeders that make the internet an unpleasant place to moderate.
But by being frank about our concern for our men, we may bridge a gap in our mutual understanding. Feminism isn't about silencing them, it's about making it safe to speak for everyone.

We tend to talk about our concerns to other women, particularly in conversations about how better to raise our sons or care for our brothers and fathers. We typically don't talk to men because a lot of the time this conversation makes them really uncomfortable, or angry.

We worry about you guys a lot because the patriarchy is destroying you.

We worry about our boys when they get bullied at school for being effeminate. We worry when our husbands get laid off at work and then spend the next six months watching sports  videos on youtube but never once talk about it with us. We worry about that article about the husband who was involved in an officer related shooting and three months later shot his wife, kids and himself in a family suicide. We worry that our sons won't learn how to treat women with respect because of the way the outside world influences them and then they'll have unhappy marriages like those of our brothers and fathers.

Mostly, we worry about your lifelong mental health.

This too is feminism.

A lot of the time one of the big reasons you can't talk about how you feel is because how you feel would leave you vulnerable to further abuse.

Because it's not in your head.

The kind of people who would rape or assault or murder someone frequently do so because they feel contempt for weakness, which due to the patriarchy they associate with being female or effeminate. And we're ALL terrified of them. They shape the world we live in. They make us fear every public space and guard our homes. They guard the patriarchal beliefs of our world with literal fists and guns and putdowns and hush campaigns and out of court settlements...and they use their power to make us all dance to their pipes.

They silence us through fear.

Here's how I see a lot of guys who don't understand the patriarchy and how it impacts on them end up living and thinking:

You don't tell anyone how terrified you are. You don't want the women in your life to know. They're so frequently looking to you for support and protection. When they start pressuring you to be more open minded and be more feminist, it scares the living crap out of you because your next thought is to those people - those people who would hurt the both of you if you dared be like a girl.

You'd rather break your fist on a wall than cry in front of the woman you love. It's ok for your girl to cry, because someplace in your head there's a little rulebook that says it's ok for girls to cry or show their fear. Because they are females. Nobody hits a crying girl unless they are really bad people, right? But boys...well that's another story. Everyone knows you'll get your ass kicked if you cry on the schoolground - unless you're a girl.

Girls get raised to expect this stoicism from you because their fathers were the same way. You fear they might disrespect you if you don't get this right. You feel that they expect that you'll just hold them like an archangel wrapping their wings around them whenever they weep - even if seeing them weep makes your chest constrict and burn and you need to bite the inside of your mouth not to start crying too.

You feel terrified of other men sometimes. A lot of them are really violent and aggressive. You worry about how you look to these nasty guys. They may bully you in school. They may harass you in the lunchroom. They may trashtalk you in the office. You're just as bloody scared of those guys that call women whores as women are - because some of them will beat you to a bloody pulp if they ever found you crying in the men's room. Sometimes you envy women the freedom to just cry like that without being in regular danger of assault. But you're a guy, not a girl. If you lose your job, or you're getting a demotion, or your mom is dying, or you just need to cry for whatever goddamn reason, there are a lot of places that are not safe for you to do so. The ones that are generally require you to be totally alone while you do. Because you’re not a girl.
You worry about seeming in control and strong. If you're strong, you can protect your home and your family. That matters to you. You're the watcher at the wall. When those scary bad guys come you need to be ready to do that dominance display - those bad guys respect that kind of thing. If you don't look strong to them they might just decide to take whatever they like. You need to look like you can take them on. You can't be a girl. But you believe as a man that that's your job to do, stoic and all alone. Because of sexism.

I think it's killing you.

For some people, being unable to express their emotions builds up dangerously. It becomes like a volcano full of hot lava that's just waiting to blow. It has nowhere to go, so it just gains pressure.

And you can start to feel angry. You begin to feel resentful. That little niggle of envy you feel when women cry starts to work around inside of you like a grain of sand in an oyster, hardening into a pearl of buckshot ready to explode.

You feel stretched thin. There's nowhere for you to go. So when a girl comes to you for something you are grumpy and irritable and rude. You might say something nasty or sarcastic. You might find yourself saying some pretty bad things over beers with the boys or in the gym showers. It feels good to get it off your chest because fuck knows you can't cry about it, can you?

If you grew up in an abusive home where you didn't learn how to handle anger well maybe your way of showing that is with your fists. If you're really messed up in the head enough by the violence that's to be had in this world you might just find yourself taking in a lot further than that. God help anyone who's nearby when you're drunk… and suddenly you ARE that guy everyone is terrified of.

You probably find yourself thinking "I sound just like my father/grandfather/uncle/that guy who sexually assaulted me on deployment/the bully from high school…"

You horrify yourself. You can't breathe and you can't cope....and at that point men tend to go one of two ways: They turn it inward or they turn it outward.

For those who turn it outward you see them trying to pretend there's no problem. It's just so much easier to live when you can pretend that's not how it is. It's not your fault...she was asking for it. She shouldn't have been there. She shouldn't have worn that dress. She shouldn't backtalk you. She should know her place. A man is the head of the home. All men are like this...

I'm not a monster. I'm not a monster. I'm not a monster.

These are the men we talk about most. The ones that everyone discusses.

I think there's quite a lot been said about the former.

But I think there’s a lot needs saying about the latter. About the kind that turns inward. The ones that quietly and peacefully drink themselves to death without ever raising a fist. The ones that lose themselves in World Of Warcraft and craft beer. The ones that silently slink away in the night and take a long walk off a short plank. The ones that stop living. The ones that go cold on us, and distant and unemotive.

I think those are by far in the majority. These men are ending their lives in shame and silence or living under a crushing burden of quiet despair. By acknowledging this fact instead of ignoring how pervasive and real the oppression of the patriarchy is FOR MEN, we can change the conversation. In the patriarchy there are no winners. There are only losers. It's not Them against Us. There's just us. "The point is not for women simply to take power out of men’s hands, since that wouldn’t change anything about the world. It’s a question precisely of destroying that notion of power." - Simone de Beauvoir

Friday, November 24, 2017

#NotAllChristiansHate


Today I watched this talk. I felt like I was hearing my inner monologue from a decade ago. I was moved to write about my feelings, especially in the current world climate of hate masquerading as religious piety.

We are living in a new age of persecution by the Christian faith. You heard me right.

There is a dominant narrative in a large number of modern denominations born from a school of doctrines that have popularised the following ideas that Christians use to justify oppressing others:

1. Spare the rod: The belief that physical violence is a valid and even essential tool for appropriate parenting. This teaches that you are not allowed sanctity of your person if you disobey a dogmatic rule set by an authority figure, regardless of your opinions on the rule. This attitude later justifies to Christians why violating the bodies of nonbelievers is a valid form of care and love.

2. Demons can possess people, it is an affliction that affects their ability to conform to dogma, and it is your duty as a fellow believer to liberate them, by force if necessary. This line of reasoning teaches that different beliefs are a disease in need of a cure, and the cure may be administered involuntarily because the demon is in control and thus the person is not fully human.

3. Demonposession is catching. By associating with the possessed, you make yourself vulnerable to possession and familial disaster. This has two effects. It teaches believers to other divergent thinkers as possessed, thus efficiently dehumanising them, and it invokes the aforementioned notion of forced treatment for their affliction but elevates it to a group level.

4. We must liberate the world from the yolk of Satan. This neatly corrals all divergent thinkers ( and to dogmatic Christians EVERYONE not of their faith is divergent) into a position of infantilisation to the parental love of Christ and his "bride", the church. And since we've already established you shan't spare the rod...

It's easy to see how some would then take this rationale and extend it to include rape, assault, even murder or genocide. If the Stanford prison experiment taught us anything it is that a few bad rules can make a monster out of anyone.

I watched her talk on cults and the abuse she experienced and it hit me like a gut punch.

This was my life.

This was my partner's life too.

Divergence led to othering because of perceived satanic influence and this later justified abuse. Her eventual motive for rejecting conservative Christian doctrine pretty much matches my experience: That's not love.

My father is ultra conservative. It is commonly agreed by him and my grandmother that I am deranged, and that my beliefs result from demon possession.

When I stood my ground against his advocacy for the revocation of abortion rights and transphobic propaganda he became blatant in his attempt to force me to accept his abusive worldview or risk the relationship.

I chose to walk away.

I love my father. I miss debating art and philosophy with him. He loved discussing maths and science. I miss being held by him, his scruffy beard and sharp wit. I miss arguing with him...just not the arguments about dogma.

If you ask me to choose between two people I love I will not choose the one who made me choose. It's that simple.

If your doctrine teaches a seperation from  sinners as an instruction from god, if it teaches humiliation as punishment and excommunication,  the use of  a the rod, if  it demands unquestioning faith and obedience to power and accepts violence as a normal experience in families, if it encourages coerced marriages and shames difference or independent thought then I reject your dogma.

If it is a choice between your god or my sinful friends, I choose my friends because it was your god who made me choose between loving Him and loving everyone else.

If God is love, then let there be love or I reject your hypocritical god.

I will not respect your religious rights if they remove the right of others to choose to reject your doctrines and morality. So if you cry for your religious freedom to me while believing this you can cry me a river. I will not protect your faith.

Religious freedom is the freedom to choose your practice of faith. Any action that impedes this freedom is a violence against an individual's right to autonomy.

It is incompatible with a society free of war and cannot be thought of as ethical when viewed from the moral values common to the overwhelming majority of cultures, which is that we generally abhor violence towards others and should avoid it.

So no, you do not hide your hate under the veil of religious freedom or for that matter free speech ( but that's another rant...) with me.

I will give you no quarter. No excuse for abuse.

Christians, you need to put your house in order. Take the beam from thine own eye. If you are in a church where these doctrines are accepted and can safely challenge this, speak out.

If you are silent, know that in the words of Archbishop Tutu you have taken the side of the oppressor.

Show the world that #notallchristians hate.

Regards,

Someone who read the Bible,
Cover to cover,
But got stuck on Corinthians 13.

PS. I'm agnostic now, so I've no horse in this race as it were. So don't go presumptiously frothing at the mouth about how I'm just  some Dawkinsian verbally abusive atheist who denounces all religious practice. You don't know me.


Monday, November 13, 2017

About PMDD

About a month ago I start both Concerta for ADHD and Zoladex for PMDD/Endometriosis.

Gotta tell ya, this has been a trippy month...

Everything was fantastic. I was doing stuff, organised, I was just rocking round the clock...

Then I ovulated and all hell broke loose.

For those unfamiliar with the disorder you may want to Google PMDD. It's PMS - but instead of just moody or emotional you're psychotic (literally) and suicidal or violent. AKA clinically insane. Until you start to bleed.

The heaviest bleeding of my period has always been the day my partner and I know it's going to be ok again.

This month was different. I hope that means the meds are working.

It wasn't as bad as usual...but that was sorta worse from a certain perspective because I realise now I'm usually so far off the reservation I don't KNOW how bad it is.

Before all this I was flying high. I felt fantastic. Life without stimulants for my ADHD was HELL. Getting the meds I needed was liberating.

I was in a flawless routine. Up and at it by 8:30. I was eating, sleeping, working like a well adjusted adult for once. I was ticking off items on my task list so fast I was running out of to do's, a completely novel experience for me.

Then I ovulated.

Day one of PMDD everything I was shattered like glass. I stopped eating, cooking, bathing, moving, talking, working. My sleep cycle isn't. I wake up or pass out seemingly at random. Reality seems abstract. People feel like NPC's in a MMORPG. I don't know what day it is without checking the calendar on my phone. I lost a day twice in a week - I can't remember what I did that day at all.

Everything hurts. I'm sorta limply trying to institute my usual chronic illness coping strategies but I keep finding myself doing something else, usually hours later, super confused about how I got so off track.

There are times, like now, when I'm lucid. I try to write or tell people about it. I guess I'm trying to take field notes for my research, or warm people of what's going on. But twice I've found half written essays in text on my phone.

This piece has been discovered after I passed out around one today:

"I haven't eaten. I was awake until 4am, then slept an hour and was awake again by 6.

I have a back spasm and I keep catching my jaw clenching. I think that's how I passed out earlier - I took a tranquilliser for the back spasm. How many? I can't remember.

I should eat. I never defrosted anything. There's fish fingers. Been saving those for days like today when I fail to function. Hurrah. The system works!

I'll be back shortly. Fooooooood..."

The next day:

"I made fish fingers in the oven. Twice. The first time I forgot to turn the oven on, lol."

Four hours later I was asleep again. I wrote this the next morning:

"I lost another day. I was awake for 4 hours, slept for 8, woke up tired and throbbing with anxiety.

Things are more sore than usual. Burning hands, random sharp pains in my legs.

If I take another Rivotril I may as well write off the next week too - the hangover at this kind of dose lasts days. Damnit I have things to do! You know! Like survive!

What is happening physiologically?

I wonder. If I can understand what's causing all these secondary issues maybe I can compensate. Many sites talk about Progesterone intolerance. Seems consistent with my case. Would explain why going on birth control at 14 coincided with me getting more nuts, and the disaster that was depo provera.

Thank goodness I resisted doing that again. Sometimes I do get it right on instinct - I never had a hard science reason for saying no, I just felt it would be bad."

It's tough when all you have is instinct. People don't respect your intuition. Guess that's how I ended up in this mess. I never had a good enough explanation for why I said there was something wrong with me.

It's the hardest thing about this: Being treated like the girl that calls  wolf.

I've been judged a lot. Too lazy. Too selfish. Too dependant. Unwilling to commit. Defiant. Martyr complex. Hystrionic. Hypochondriac. Arrogant. Stubborn. Superstitious. Inflexible. A bitch. Borderline. Manipulative.

Really sick day in and day out isn't something people understand. They can't conceive of it.

I think people just have a tolerance limit for drama...and if your life sucks more than they can deal with they bounce.

Can't blame them. I've had a lifetime to get used to this high octane level of ridiculously improbable bad luck. I don't even see it anymore. I was diagnosed as really seriously challenged at 4.

It's truly still surprising to me when I post something I think of as dark but funny online ie. "When your endometriosis is so bad they put you on chemo...:/" and people respond like my mum died.

That was supposed to be like a little funny...I mean it's not actually chemo, they just called it that, it's a hormone treatment....oh whatever. "Thanks for the sympathies." I finally end up saying instead, feeling like a tool for making people worry so much.

I forget it's a surprise to them that it's THAT bad. You get to the point of being insensitive to how really very strange it all is when it's your daily life.

I don't feel like I'm a downer, but I guess I am. It's like having cancer. Just admitting you are ill reminds people of this terrible truth they feel they should be tiptoeing around, bowing to, like they need to dress in black, cover mirrors, speak in hushed tones, bring flowers to your grave...

And I'm like, dude, I'm right here. Just chill. If I need a black parade I'll show up dressed like Wednesday Addams. If I'm not crying about it, you don't need to be on your toes about it with me either. I want to laugh about this. It helps.

I dunno what to say. What do I need from people? Why did I write this?

Maybe just for others like me. It's been the only thing that made me feel less nuts  - reading about how others felt.

So yeah man, you peeps aren't alone. I get you. *Hugs*


Monday, October 23, 2017

My child just got diagnosed today. What do I need to know?



Dear carer.

Everything and nothing has changed.

When we arrive we get handed a set of default character traits from a lotto basket, and sent off to the world without a user guide or a walkthrough.

All of us.

But two things are known.

There are those who understand that kindness and cooperation is the only path, not just between equal adults but between all living things on the earth. ALL living things.

And there are those that believe they control this world and things or other people in it.

Be the former. There's no control over your life.

There's just learning to surf the waves that would drown you with style, reveling in that with others, learning the skill or teaching it. Control is the dream, the illusion we all want to share.



I'm going to be counting on you to teach me when you learn, because my waves are the kind that put people under the ground early more often than normal.

But dude, if I lick it, you're gonna watch me surf some epic waves.

People will try to stop you seeing me as a person like you. They will tell you what to do or think or feel or believe, as they try to determine how to get me to behave.

Aim to misbehave. It's said no well behaved woman ( or for that matter man) ever made history. Think on that.


Trust the ones who try to understand what YOU think. Who help you better understand what other people are thinking by helping you hear and see them better when they try to tell you.

Those are the good ones with the knowings of the way of life.

And remember I'm not little you, or less you, or kinda you, or you plus.

I'm just you. We all are. We are all one thing, and the same thing: Sentient.

Forget literally everything else you think you know. I'm about to matrix your life.

You can let that break you.  You can try to fight the sudden break in your world and sell me out for a steak and some potatoes and the illusion of that comfortable reality back again...

Or you can realise that for the most part there really is no spoon.

I don't need to speak, or write normally to communicate.

I don't need to hit milestones to develop.

I don't need to recover from being different. We're literally all different.

I am also sentient like you. Nothing changes.

But things just got real because someone noticed I'm off the proscribed child behavioural script and are trying to put me back on track.

I'm likely not liking that track.



Get me out of here if you need to. I might not be able to run. But I can show you if you watch me closely. Watch my eyes.

We're going to need to stick together, you and I, if we want to get through.

But you got this.

Up to you. Blue Pill, Red Pill.

Monday, August 31, 2015

Dysphoria.

Triggers: Transgender dysphoria/suicide.






She goes deathly calm. Then, in a almost imperceptible monotone she speaks. " I'll take a
rope from the cupboard..."

She uses the phrase "it hurts" and " I can't go on." so many times I lose track. Her eyes beg me to tell her it's OK to die. I can't bring myself to accept that, but I feel cruel and selfish for it.

"All I can do is keep going, fueled by the desperation of ending this pain. It's like a sharp ache...that never dulls."

She looks at me for minutes on end, never breaking eye contact. Tears roll silently down her face, too dignified for snot or puffy eyes they just leak out. I hold her hands and she crushes them but says "Don't touch me" when I try to hug her. I take my chances and rest an arm over her anyway. I wipe the tears from her face with slow precise exacting gentleness.

"I have to go on. I take care of you because I must. I work when I can find a breath in the agony on only those things that might save me.

But we both know nothing can save me. We can't get surgery. Nobody will pay for it. "

Her face forms shapes I've never seen. I hold myself in stasis, gently smiling and holding her eye contact as my eyes brim. I hold this space for her, even though my mind is losing it's shit with horror and fear.

Her eyes are dull. Vacant. She is everywhere in the eyes of torture victims I've seen in photographs - the ones who lived.

We've had a quarter bottle of jack just to get her defenses down this far.

She's been alone so long, before I came, with nobody to care how she feels, that she has no idea how to tell me what she's feeling. I say "It's like a story".

At the end,both of us fading into sleep, we just stare at each other, filled with quiet desperation, like lovers in a car crash saying goodbye because you already know one of you might not make it to morning if the other can't stay awake and find help. I must find help. But where? She is a nameless face in a crowd. The surplus people.

I'm scared to sleep. If I hide the rope...who am I kidding. She built hydrogen gas bombs as a kid in the well on their farm. How can I stop her. I must live with what she lives with.

Is today the end of my willpower?

Is today my last moment?
There is no help. We've been through therapy and drugs. Now it is surgery or death.
I have always known this
I've known this for two years - she was dying.
Every moment was cherished
I may only have so few.

I have always accepted she may not make it. 45% suicide rate.

That statistic haunts me like a taunting spectre when we make plans to go to South America one day, or climb a mountain when I've mastered my physio.

45%.

She will not be alone when this suffering is all she knows.

She will not be alone at the end after a life like like hers