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:

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