"Having observed that I have all my life acted more from the force of feeling than from my reflections, I have concluded that my conduct has depended more on my character than on my mind, after long struggle between them in which I have alternately found myself with too little intelligence for my character and too little character for my intelligence." - Giacomo Casanova, History of my life Vol. 1

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 adress 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 often 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 "independant 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 for 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 for yourself, and 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.

This however needs to be actively tempered by the next rule...

Rule 7: Being part of my cockpit crew is a PRIVILEGE. 
Choose to place your energy only in the people who from 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.

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 wellbeing.

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 institute\ing 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, March 18, 2018

#Ican'tkeepquiet



Before we begin I want to prime you all with a song I am claiming as my new anthem. Listen to it before you read the post below. You're going to need a bit of a boost getting through this one because it is heavy. There are so many triggers that I'll probably miss a couple if I try to declare them. I'm just going to say guys, if you aren't chill right now please for the love of god don't read this post. But if you're rocking some extra spoons, hit it.

BTW:Verse 2 is particularly important to me right now.




KEEPING SECRETS:


Whenever I talk about the struggles I face I begin the whole business by considering what the truth will cost me.

I look at you, the person I'm talking to and I think to myself : If I tell you this truth, will it help me save my life, or will it make it harder for me to survive? The result of this decision determines what I reveal to you, and I begin to carefully redact parts of my reality from you so that you are not a threat to my life. This reality, that my authenticity is a threat to my life, is something I feel others simply do not understand. I'm here to try to persuade you that however beautiful vulnerability and authenticity...there are things that are raw and deadly in that truth that you are not all always ready to face and so before you judge my decision to keep things to myself....listen.

Mental health stigma is a reality. Your response to this document will be determined by the degree of stigma you apply to me. Even the best of you whom I love. Sorry guys. Truth talk time. I am CONSTANTLY being judged, even by the BEST of my supporters. I am not blind. And frankly it's ok. I don't actually expect anything else. It's just the way the world works. We are all blinded by our own narrow experience of reality and doomed to mistake OUR truth for UNIVERSAL truth. It's a cultural thing, I think. I forgive ya'll

"How melodramatic! How unethical! How Paranoid!You must be mentally ill..." a number of you are thinking right this moment.

"I know exactly how your feel. You're not the only one. I wish I could speak to someone..." another number of you are thinking.

I suspect most of you are also thinking... "Where is she going with all of this? What is she doing?"

And the truth is, I don't actually know. I'm, writing whatever I feel like and not trying to change it too much.

All I know is that I feel like I am in over my head, playing in an arena with forces so far beyond my skill that my life, my literal life not some vague abstract philosophical or euphemistic abstract concept, is in danger.

Already I'm running the odds in my mind and concluding that some of you are going to think "Bullshit! You're such an attention whore." or that others have decided they aren't even reading this any further because this all sounds far too intense, or serious, or scary....and that's ok. I forgive you. I love you enough to release you from this burden if you cannot carry it. Be kind to yourself. You know what you can take on today and what is beyond you and there's no shame in not having spoons, even if you love me.

BURSTING A DAM WALL:

Today I decided I'm going to keep going. I'm just telling it like it is. I'm going to not leave anything out just because some of you will leave, or disengage, or stop listening, or get angry, or start gossiping about me... Because I've tried that road. I know how it ends.

I've failed to keep my secrets. And I am gradually, slowly, creeping closer to a literal death by self-neglect due to illness or medical negligence that leads to stroke or heart failure.

I am to die I will go down in a blaze of shining naked glory spreading the truth of what I know and who I am across the sky in a perhaps gory but fantastic display of psychological self-immolation. I protest this world which I believe would let me die because I wasn't ENOUGH to save. I know some of you know that I don't deserve this and this post hurts you but I can't keep quiet anymore.



I'll qualify my statement. I don't mean I'm dying quickly. I'm not suffering from something that will kill me TODAY (provided I don't succumb to depression and kill myself,  which is a statistically probable thought not high risk possibility at present so kindly save yourself the effort of sending me links to suicide hotlines, I already have them bookmarked).

 I estimate, depending on various factors, that I may have as little as a year to live unless some of my attempts at intervention succeed for once. I am also one of at least 3 different people I know right now who are equally in this much danger and yet nobody is aware of this for reasons I'm going to be trying to highlight elsewhere in this post. The reason we are dying are oft discussed in the abstract but I'd like to paint you a picture of what happens when people stop providing services and care to those with physical and mental illnesses. If I don't make it, I want my life to be the example people point to and say : THIS IS WHY WE SHOULDN'T BE DOING THIS. THIS IS WRONG.

#FUCKTHEPOOR

The trajectory of my life as it is currently proceeding is a deadly one. Despite some efforts being made to resolve issues with executive function, memory, persistent fatigue, chronic pain, management of mental health factors and external financial support the overall efforts martialled to my aid have routinely fallen short by about 80% of what was required to actually create the conditions necessary for me to regain control and affect meaningful change. Enough to drive someone to suicide right? Yeah, well, I've been there and tried that and decided fuck all of that. I'm going to survive against all odds and make sure that I blaze such a trail of glory and leave such a mark on those around me that when I die I will be a martyr people rally around to protest classism, sexism and homophobia, and if I live I'll be a leader that changes the world.

Delusional? Sure. Maybe. I also have nothing the fuck left to lose. Everything I love is gone up in ashes. If I don't do something extreme and extraordinary what point did it all have? I must make it matter in whatever manner I can. I'm the stuff suicide bombers are made of - but I've turned my energies to SAVING THE WORLD, not TAKING REVENGE.

Persistently this failure to obtain sufficient aid has been assumed to be a personal flaw by precisely those best positioned to take action such as doctors, nurses and aid workers. Obstacles have been placed in my path to obtaining further financial or physical support because they do not believe that the situation is a result of of circumstances beyond my control - despite the fact that people with the sort of trauma and circumstances I have had to endure are scientifically proven to have a significant disadvantage in escaping such circumstances and are unlikely to do so unless external intervention is provided to aid them in regaining control. They see me falling off the bed, reach out a pinky finger to catch me, fail to get a grip and so I fall....and then I'm told I didn't try hard enough because others have grabbed that pinky and not fallen what's wrong with me? Why am I so HEAVY?

GIRL, INTERRUPTED:

It is easy at this stage to suppose that their actions constituted "good practice" or "tough love" and that I am merely a whiney wastrel. You would be wrong. Do you know how I know? Because the very closest people to me, people who have watched me day by day and know how I choose to live have repeatedly remarked that I am extraordinary. They have remarked that I am doing things they themselves don't feel capable of doing. And I'm doing it with grace and wit and charm. I'm FLOURISHING in the realm of being loved and respected by those around me WHILE utterly failing in the realm of actually, you know, surviving on my own. So no. I'm not a bad person. Go fuck yourself for assuming that.

I have complied with every treatment protocol to the letter until. In one instance those protocols nearly cost me my kidneys.

I have attended every clinic, completed my homework, showed up to each appointment.

I've reduced my bad habits, lost a fifth of my body weight (which, when you weighed 160kg is a fuckload of weight), reduced my smoking by more than half, excercised my way out of a wheelchair, improved my sleep sanitation, talked to my therapist about my childhood trauma, attended group therapy, admitted myself to an inpatient ward and cooperated with the program, obeyed my carers in every way I could figure out how to.

And I still continued to be increasingly and progressively more ill and I am gradually developing more and more serious complaints, some of which are life threatening like my blood pressure that is 200/100 on a bad day. I have such serious exectuive function problems that my housemate purchased a fire extinguisher in my honour because I kept leaving the gas on. When I suggested I receive medication that can treat both these symptoms immediately, my doctor told me to come back in a month for an assessement to determine if it is justified in my case because they have no evidence I need the medication. That's just the latest example of how I keep getting screwed by the medical fraternity.

 My anger and frustration and dissapointment have been invalidated through false diagnosis with personality and mental disorders that were intended to illustrate to me that my own mind is at fault, not the environment I find myself in,  or any physical illness I have., The therapy and care that WAS provided emphasised that asking for help beyond what is being provided to me was a sign of relapse or illness because "codependence" is a behaviour described as disordered and I must be showing "learned helplessness".

Little care was taken to differentiate between the normal healthy dependence that all people have on their friends and family, and the dependance I had shown, and so for many years I entirely cut myself off from such support and "focused on myself" and "learned to love myself" and "self-validate". 

I also became socially isolated and agoraphobic as a result because while I was exploring all of this self improvement, I was more and more told that speaking the truth of my experience was "manipulative" or "melodramatic" or "abusive" or "controlling".

ONE FLEW OVER THE CUCKOOS NEST:

During this time my health bottomed out even further, but I did learn much about self-validation as a result of my very serious devotion to self improvement, because in the end when you begin to learn to trust yourself and your perception of reality, just the way they tell you to, those who would gaslight you to believe that what you need isn't what you need eventually lose their grip on your mind. I can tell you when it dawned on me I knew a rage I haven't known since the day I got pissed off at god for letting my baby brother die.

My therapists and doctors had a grip on me and they told me "You are not sick. You are not suffering. You are not in pain. It is only your imagination that is overactive, you are living in a virtual reality spawned by your childhood trauma, it is not in your body, it is in your mind." Stop arguing with us. Stop complaining....or else.

The or else was that nobody refers me to clinics for physical complaints anymore. I have indicators in the content of my file that has blackmarked me from receiving these services because I am now viewed as being delusional or worse yet, possibly an opportunistic malingerer. This all happens very silently, very unobtrusively, because of policies that exists that state the such people should never be overtly told they are being blackballed. There is merely a quiet consensus in the medical fraternity that if a patient complains of pain while mentally ill the pain is not real, and you don't have to follow normal procedure for handling that pain such as ensuring they receive investigations like x rays or blood tests or physical examinations.

Perhaps you think I'm being melodramatic? That I'm simply not willing to consider an ugly truth that I AM delusional? Again, fuck you. And no. I went and I studied fucking medical texts, thousands of hours over thousands of days. What the hell else was I able to do when I was so sick I couldn't get out of bed? I READ. More articles and papers and books on the topics related to my disorders than any doctor qualified in the field is EVER required to study. I checked their work. And they were LYING TO ME.

TL:DR MEDICAL HISTORY

Somatoform disorders, malingering etc. are by definition disorders of exclusion.

And the other possibilities have not been excluded. 

What is occurring is that I have NOT ONCE had an opportunity to provide the following to a medical provider BEFORE they judged my suit false. Despite my best efforts we keep running out of time before I can even begin to comprehensively describe my symptoms and my situation:

Examples of reasons why my case is not properly proven:

1. I have never presented a comprehensive selection of investigations of the areas that are affected, like my hips, spine, shoulder or knees such as xrays, scans, physical examination for positive or negative signs. Only a few were performed, their results were inconclusive, and I have not been provided with a second opinion as is my right.

2. No blood tests have been ordered to determine whether I suffer from deficiencies or other negative markers that might conclusively rule out physical illness.

3.I have watched others apply for services and aid and receive it routinely with far less effort or justification than I was required to provide. They were routiinely not previously diagnosed with a mental illness or part of the LGBTQ community. I believe this has influenced the quality of my care by colouring the perception of my reliability as a witness in my own story.

4. I have blatantly had childhood diagnosis with ADHD and other disorders openly questioned by doctors who did not even bother to contact the physicians who diagnosed me to confirm my story. They dismissed the diagnosis out of hand without appeal to any contrary evidence other than their own opinions. These opinions were typically formed in visits that lasted less than half an hour, while the original diagnosis was made by physicians who treated me sometimes over a period of as much as a decade.

5. Repeatedly requests that my previous medical history be brought forward and examined has been rejected. As it stands every physician I have dealt with has begun a new file, and refused or neglected to consult with any previous records I may have unless they originated in their own facility, and even then records were often incomplete or missing entirely.

6. I was refused access to a grant without appropriate examination of my means and assessment of my current condition, again generally in consultations lasting less than 20 minutes by doctors with no previous records. Few took the time to fully take my history and none examined me physically.

7. Demands to receive reassessments or second opinions were often met with suggestions that I was a hostile patient whose behavior was abusive, despite me never resorting to rude remarks, shouting, physical violence or ad hominem attacks on the physician in question.

8. My complaints and requests were repeatedly framed as being in the context of my (provably incorrect) diagnosis with a mood or personality disorder even in environments where that context was not relevant, such as where physical examinations are the appropriate means of determining a patient's status.

9. Despite compelling evidence that a physical disorder was the origin of my psychiatric symptoms ( I responded entirely positively to a hormonal intervention that eradicated larges swathes of my mental health problems in a single month without any changes to my drug regime or behavior) I continue to be labeled as having this disorder and it is brought up in every session that I have with a health provider. This disorder can influence drug choices in every aspect of my care and is creating a barrier to treatment of my other disorders due to fears about interactions or side effects that wouldnt' be relevant in my case if the diagnosis was discarded.

10. I am routinely disbelieved when I describe the severity of the situation I am in, the degree of pain I suffer, the amount of struggle I face and the degree of risk of death by unnatural causes I am facing, and this is in part due to the fact that I am diagnosed with these mental disorders that brands me as an unreliable witness of my own situation, even though it now seems I do not have them.

11.The diagnosis I DO seek is being refuted on the grounds that my symptoms can be explained by the diagnosis I do not have and are thus not relevant in any new considerations. I had to ask no less than 5 different doctors at three different hospitals before I was promised an assessment for this disorder, despite having already had a diagnosis in childhood previously which was ignored.

12. Despite receiving extensive therapy, the most commonly prescribed intervention I have received is therapy. Other therapy like physical therapy has been extremely limited. Drug therapy has consisted exlusively of psychiatric medications for the past half decade.

13. Literally no interest has been shown by my doctors in my circumstances or living conditions or how I am actually surviving. Only twice has a home visit occurred, and only by a professional who in the end had no influence or contact with my medical providers. They have LITERALLY no idea of what my life is like at home, and they disbelieve me when I describe the situation in as exact terms as possible. ie. I am starving, I cannot cook for myself, I cannot clean, I cannot bathe, I cannot work - all exact factual statements I am extremely willing to prove under scrutiny but which have NEVER been conclusively proven to be exaggerations or lies by ANYONE responsible for my care, or ANYONE who knows me in person.

14. Despite me being exclusively dependent on third parties for my meals, my accommodation, my utitilities and transport, my groceries, medical care, medicine, clothing and access to the internet I am still being charged medical aid rates for care at state hospitals because I am deemed to be privileged. I've actually applied to the department of labour for their unemployment register which qualifies me as indigent, but I am not believed despite being willing to answer any questions and submit any documents I am physically capable of obtaining to prove my indigency. No consideration is given to my disability when demanding that I must obtain additional proofs from sources I am not able to visit because I am too ill and so my failure - a direct result of the degree of my disability - is taken as evidence that I am not indigent and merely opportunistic.

15. Any sign of anger, disagreement, distrust, dissapointment, sadness, fear or upset about medical providers or the system of care is interpreted not as being the fitting emotional state to feel when subjected to these experiences but a result of wrongful thinking on my part, ingratitude, a bad attitude, delusion or emotional disregulation. In other words I am only allowed to feel positive emotions about this situation, or I am sick and wrong.

I'm tired of pretending to be ok out of fear that being authentic will be a price too dear to pay. I'm tired being gaslighted and silenced, and worse yet gaslighting and silencing myself.

I'm tired of putting a positive spin on it. Of turning every communication to the outside world into disability porn because people can't deal with the reality that my life is a steaming pile of shit they cannot imagine anyone surviving and not find it creepy and improbable and this suspicious that I'm still being so calm and reasonable and they doubt the truth of my story because they simply couldn't live like this themselves and not fall apart entirely or lose their minds so I therefore it is me that must be a FAKE.

AND THEN IT GOT WORSE:

And on top of all this, there is another layer of struggle that literally only four 5 people in the world knew until today. Even my therapist, whom I have seen for six months, did not understand the depth of my despair and hopelessness and fear and danger danger danger....until this week. A dam wall in me broke. I couldn't do it anymore. I can't pretend anymore.

When most of you were sipping champagne on new year's eve, I held my partner in my arms as she wept her way through the countdown. After it ended, I begged her to give me 365 more days to save her and my life before I would stop standing in the way of any attempt she might make at suicide.

You see my partner and I are transgendered. She needs surgery to stop feeling like cutting her body apart because she has features that do not belong but which she feels every time she breathes, or turns,or walks or dresses or bathes....like a giant thorn lodged in a nerve bundle throbbing to be removed but which she must daily simply tolerate because there are no painpills for gender dysphoria There's only surgery and we are too poor to pay for it. Transgenderism can be like cancer, a slow death that results from a person suffering so much unremitting daily pain that the surrender the will to live.

She no longer eats unless bring her food and I'm getting too sick to bring myself food let alone her. She just sits and keeps herself distracted with reading a bunch of papers on topics I'll never understand and trying to solve equations I can't even read. She is a genius who could have had a sparkling career in IT or mathematics, but her beautiful mind is dying....she tells me stories of a cow on her childhood farm who died after miscarrying because she just...decided to die.

At midnight tonight I will have 277 days left to do something magical and amazing and save her life, or find a reason to persuade her to give me more time. As it stands if she develops complications due to her current malnutrition I have been instructed not to resort to extraordinary means to save her life. I am being asked by her, with a regularity of about once every two days or so, to let her die.

I have been living with this reality now since roughly 30 October of 2016. I was not at liberty to tell this secret as it was a matter of her privacy, but I am reaching a level of desperation that has caused me to act to save her life despite that involving taking actions that may in the long run end our relationship, even if it saves her life because these are not my secrets to tell and she does not want me to save her.

Even if we could pay for the surgery today, she'd still only have a slim chance of surviving as she is so emaciated and weak and run down that she might not be able to receive it and she has explicitly stated she is too tired to try. I'd have to turn on my charisma to 1000 to persuade her to even TRY right now...but I know that I have that power. I used it the night I got her to promise to give me another year. I can do it again.

I hope that I can change her mind. I hope that I can help her survive even though she has stopped caring if she lives or dies.

WHY HAVEN'T  YOU TRIED DOING IT MY WAY?

I have asked for help before. Nobody really wants to get involved. They might send me a bit of help here and there, but in general everyone seems to be suffering from the bystander effect: Someone else will do it. Or pehaps they are just unable to handle the truth. They think: Surely they are exaggerating! People prefer to think that surely the reason this is happening is because I'm just not availing myself of the support structures we all want to believe exists to prevent these catastrophes.

They need to believe that me failing to get help is my CHOICE because the alternative is enough to make people turn ashen. The alternative is a cold, dark, deadly world that they are not ready to believe is reality.

They can't handle the truth.

Nobody really believes that the only solution left is for individual people to support us financially until we can get ourselves healthy, get her surgery, spend time recovering physically and mentally and then rebuild our lives because rich fucking assholes have been producing propagandistic bullshit for years to convince us that people who die of hunger or live in poverty have nobody but themselves to blame.

I don't actually believe there will be help. I don't think anyone will come. I don't wait around for someone to rescue us because I've tried asking for that several times and failed and I'm still waiting for anyone to actually follow through with the saving part. There simply is never ENOUGH interest in saving our lives - but I've had about 20 people offer to organise food donations. That's great guys but I'm on a prescription diet and I can't cook the damn food so really more donations aren't going to solve the problem.

 I need HELP, and you don't get help in a food donation basket. |You just get variation on the theme of a can of beans  and a loaf of bread you can't eat because it gives you  joint inflammation so bad you can't walk, a box of milk you can't drink because you're lactose intolerant and it gives you asthma, and the loss of about two days of your time and money organising how to get all these useless items to your house for which you must now feign gratitude aswell or risk being branded "one of those poor people who don't want to be helped.

FUCK YOU
I need specific and rare foods and medicines to meet the demands of my specific and rare ilnesses. I  need a physical aid worker in my house providing assistance so that I can at last take the rest that I am endlessly being advised to take so that while I do my partner doesn't literally stop eating totally and die. These things COST MONEY. So yes. I NEED FUCKING MONEY.

I'm not doing drugs. I'm not blasting it all on chocolates or blow or shoes or the lotto. I just don't have a way to get any because when I try to work I develop such serious health problems that historically I've been hospitalised for burnout. BECAUSE I AM SICK.

To every doctor or therapist who has ever told me I didn't need a grant, or that thought I was a drug addict or a liar, or every judgmental asshole who ever blackened my name behind my back because I didn't meet your standards for who gets to live and who gets to die: FUCK YOU.

I AM LOVED

To every friend who has paid for doctors, food, shelter, medicine, transport, who have sat with me while I cry and who has come with me to a doctor or called a social worker or given up your own food and wellbeing to try to save us:

I call upon the universe  or whatever gods there be who can be persuaded by my sincerity to be benevolent: To reward you in whatever measure you gave, but sevenfold and unto the seventh generation.. If it is in my power to repay you, it will be done, and I will devote the remainder of whatever life I end up having to ensuring that your name is held high amongst those whose opinion you value, that you are made safe from whatever threatens you and that you are lifted up from whatever strikes you down in despair. What little I have is yours. I will pay it forward.

This I promise on my life.

And now that you are all writhing in agony over the beautiful sadness of this post, get over it.

I want the lot of you to get over how fucking sad it all is.

Because this is the reality literally billions of people live in every day. I am not important. I am not special. I am not unique. This isn't some extraordinary story and wildly tragic melodrama.

This is nothing more than ordinary life.

I DESERVE A LIFE:

Human beings are extraordinary. We survive where it seems there is no hope. They persist. ROUTINELY.

ROUTINELY billions of people across the world are living in EXACTLY the same level of unbelievable shit that I do. This is not some unique tragedy. This is just business as usual. Capitalism in full swing crushes people like ME.

I persist. I am a hero. I am a badass. I am not a victim-mentality paralysed little waif or a snowflake. But I AM vulnerable to forces so vast and wide and outside of my control that sometimes I really just need some fucking help to save a life and it pisses me off that I don't get a response unless I put on the waterworks. For fucks sake! Can't we just care for each other because it is RIGHT? Because that's what makes us human? Can't we remember that we all enter this world paralysed, squalling, a little bit blue and filthy with viscera? We all needed this kind of help. There is absolutely no shame in being too weak to care for yourself, needing rescue or help. It's not really actually such a big deal. Let us just get on with the business of it!

I AM POWERFUL:

Everyone can lift someone else up. I have proven to the members in the group I moderate that EVEN IN CIRCUMSTANCES LIKE MINE YOU CAN SHINE. I have recently saved someone from SEXUAL ABUSE and HOMELESSNESS with nothing more than my time and an internet connection at my disposal. ME. Despite what I was going through. Because I didn't make it an excuse for me to just walk on by. I reached out with a group of friends who also took a stand, all of whom have different challenges themselves like chronic illness and disabilities and sick kids and unemployment and WE worked together to change the outcome.

DO WHAT YOU CAN WITH WHAT YOU HAVE WHERE YOU ARE

We can all turn the tide of poverty and suffering in people's lives by simply refusing this narrative about poverty that tells us we arent' supposted to get involved. BE INVOLVED.

We can all reject the stories we are told about how poor people did this to themselves because WE ARE THE POOR PEOPLE. All of us are struggling. How many of you feel you have everything you need to live a good life? Stop listening to people who want to #Fuckthepoor so they can have a bigger cut or your taxes for their luxury yachts who will lie to you and teach you to distrust the poor when they ask for a handout. You are not the 1%.

You were literally born into a handout. Someone picked up your naked body and held you while your mother struggled to recover from birthing you. Someone HELPED HER GIVE BIRTH TO YOU. You have been dependant on someone since before you were born. Let's stop thinking of codependance as a mental illness! True, vulnerable, authentic, deep codependance is BEATIFUL.

As long as it comes along with a decent dose of accountability and responsibility it is NOT pathalogical.

I HAVE A TRIBE:

Let's get involved with others. Lets help them give birth to better lives. Let's not try to tell them what to do or how to do it. Let's trust them to be as competent as we are. Sometimes they will surprise you.

I'm living in a situation that is unbearable, terrified for my life. I'm pretty certain at this point I'm not going to make it no matter what I do, and my life partner is already toast unless I learn to walk on water. I'm probably not going to have any friends left after I post this post because most of them will just blackball my feed rather than deal with the reality that someone they care about is possibly dying and they feel powerless to prevent it.

But then there's you guys. The ones that apparently are just like me. Batshit crazy enough to read to the end. Stubborn enough to stick your neck out beyond a safe distance. Arrogant enough to believe that the rules don't apply to you.

I am the sort of person crazy enough to change the world simply because I believe that I can.

I was determined enough that I lost 30kg even though I'd been overweight for twenty years. I never gave up. I'm stubborn enough that I walked for five years on a dislocated ankle just to prove a doctor wrong about you being a layabout so that I could finally get help for that dumb ankle. I showed up for work with pneumonia a week after my miscarriage, because I did not understand that what I was experiencing is actually early signs of, you know, death.

Because I don't stop until I'm dead.

WHERE THERE IS LIFE THERE IS HOPE:


I know we aren't all supposed to be doing this thing where we push ourselves to the edge, but I'm just saying I'm fucked anyways so I might as well give it a shot, right? I might as well keep on trying to invent new ways to manage my illness while I cool my heels between pointless appointments that go nowhere. I can carry on trying to learn enough science to invent my own cure. I can try to start a business that will make enough money to pay for the surgery in the next 277 days.

But I need a hand. I have so many AMAZING IDEAS for people who have disabilities to earn and survive on their own terms. I simply don't have the energy or the money to implement them alone from where I am right now. But I'm a really creative and inspiring person  and if we could colaborate I could do something amazing. I KNOW it. I just sort of need to eat you know? And I can't work a normal nine to five, or leave my house even right now because reasons....

If anyone reads this and understands what I'm asking for sweet. I consider myself to have peformed my duty in asking, in every way I know of, for aid in surviving. I'm not keeping it in. I'm not hiding some of the aspects of the issue. I'm not setting all sorts of boundaries on it to make it impossible to reach. I'm just showing up, spitting on my hands and saying : Right. Let's do this. What have you got for me? I am willing to cut you all in to whatever cool thing we make, I'm not a user. But what I do need to do this is tangible help taking care of my physical needs and my wife first because I'm not a breatharian and she's more of a downer right now than Marvin the Paranoid Android.

I JUST NEED HELP.

Dream
Send me a sign
Turn back the clockGive me some timeI need to break outAnd make a new nameLet's open our eyesTo the brand new dayIt's a brand new day




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