The “C” List – The Case for Curiosity in times of Crisis.

I’ve been inspired by the #kindnesspandemic but I think we also need a #curiositypandemic to help us get through.

During uncertain times of this scale, human behaviour escalates in both positive and negative ways. I’m a list person. I’ve found through tough times lists are helpful, particularly in times of crisis, but I felt I needed to be more creative with my lists – and in particular foster curiosity instead of fear.

Humanity hasn’t seen something of this nature and size for 100+ years.  I’m currently writing this in the middle of being very ill.  It’s taken a lot longer than usual to draft because of that.

In my lifetime I’ve faced off with medical trauma and the very real possibility I might die a few times now.  I’ve become somewhat expert in neurobiology since a traumatic brain injury and an autism diagnosis.  But this was because I choose to foster curiosity to quell fears.

In recent times the climate of fear and misinformation has made things worse, not better.  I’ve encouraged to seek information and not just consume the nearest meme or video without question.  But to do this we need to reestablish our curiosity and replace our fear with curiosity.

I’ve always resisted the idea of a bucket list because people use buckets lists as though the only important time to do things that you dream of – is just before death.  I’ve always felt we should honour our lives throughout them and experience the world as fully as we can throughout, not leave it until the end.  Because the end is unpredictable, but the choice to live a fulfilled life of curiousity doesn’t have to be unpredictable, we can choose.

When I pursued a career in remote anthropology with the challenges I had – everywhere I went I had a note with me.  It said:

“Live a life fulfilled, not imagined”.

It was stuck on computers, written on post its in my wallet, paint penned inside my backpack.

I have posted before about the “f’k it list” of things you should aspire to do anyway – because they are worth doing.

Recent events, or the C word I don’t want to mention has prompted me to think of new lists.  Not to do lists, goal lists or shopping lists (although these are present).

It’s a curiosity list.

Yesterday was a struggle and I found myself thinking I had so much more to do and experience in the world and writing a list of things I was curious about exploring.

More importantly this was a list of things I am curious about that I WILL commit to exploring in the coming years.

The thing we need most at the moment is hope.

To create my curiosity list I asked of myself three questions about experiences I can be curious about (and created lists under them) regardless of where I am:

  1. What ideas and experiences am I curious about and what new knowledge can I seek?
  2. How can I share what I learn from my curiosity journey and how can I encourage those that are curious about that journey too?
  3. How can I ensure that my curiosity does not hurt anyone, that the journey is kind, fulfilling and hope filled?

We have the internet and we have more access to communities of knowledge than ever before.  Others will be limited in that capacity, so question two should include a way that you can share things that don’t consume bandwidth, blog posts, images or where still possible, regular mail and mail outs.  It may just be a phone call where a topic of shared curiosity is focussed on, rather than fixating on events.

In isolation, in lockdown, let’s get curious. The focus is on what we can do, learn and experience, right now, to start moving our thinking towards hope and curiosity is the vehicle.

Let’s take this time to bloom with curiosity, not fear.

Let’s move into the future holding onto to curiosity as a form of hope.

Regardless of what is on the other side, it is curiosity that has allowed us to invent and adapt and feel like we can take back some control when things are out of control.

Love to all.  Please stay safe.  Please take care of each other.  Please replace fear with  kindness and curiosity.

Born-day and #IDPWD

It’s my birthday and it’s also International Day of People with Disabilities.

#IDPWD2019 a day to acknowledge our struggles, be at one in pride & commit further to acting together to remove systemic inequality. Whether you like international days or not – that’s my intention today. Plus it’s my birthday, so for me it’s a celebration of survival.

There’s been a lot of talk about invisible disability and I’ve been recovering lately from some experiences I would rather not repeat, but that sadly have experienced a lot during my lifetime.

Recovery means doing what you have to do.  That might mean talking or not talking, writing, resting, rehab.  It also means dealing with the stigma (your own internalised and other people’s) associated with recovery.

Don’t let the “today tonighter’s” get under your skin.  These are the people who cry “fake” when they don’t understand disability issues like; semi-ambulant use of a wheelchair or that screen readers help low vision people use a mobile phone or people who think disabled people are broken. The people who say “it can’t be that bad” to criticise people taking care of themselves.  This is the ableist shit we cop from people who buy into the burden arguments of the old medical models (whether inadvertently or not) and this blog entry is not for them, it’s for PWD.

So here are my tips for dealing with ableist S.H.I.T.

S – is for Shame.  Shame and stigma are weapons and it’s something we are learning to resist (internal and external shame).  Try to work with kindness to yourself when you feel you are self-shaming.  For example, mental health issues are experienced by 85% of the population and probably everyone at some point in their life, if we are honest.  If you’ve had someone tell you to hide a non-visible disability because you can – gently remind them reasonable adjustment is a right and shaming you is harassment and hurtful.  Remind people (or get an advocate to remind them) that disability is not to be ashamed of and that shame can be a form of abuse.

H – is for Hate.  As an Autistic person I struggle with people’s hatred.  I just don’t get how people can hate with passion.   How it translates into thinking that because a disabled person rights are somehow special treatment – or that we are a burden.  This is hatred and it covers a view that disabled people are less than them.  I call it out and have tried to learn to call it out with compassion, but none the less call it out. Hate is hate – even when sheathed in politico speak like “merit based” arguments used to diminish what a disabled person might need to contribute.  The whole rotting pearl of “we can’t change everything for one person” crapola when people merely ask for a reasonable adjustment.  Same with poor taste jokes and casual use of disability slurs. Call out people who slag off someone else because they are different and if you can’t safely call it out – allow yourself to get space away from them or get an advocate and get to safety.  You do not have to put up with hate.

I – is for I.  Allow yourself to be an I.  Hold space, take up space.  You are enough.

T – is for Time.  Things are getting better over time.  Take employment, for example.  In 3 out of the last 4 jobs I have disclosed disability safely.  Compared to before that when you couldn’t even talk about it.  Things are getting better, it may not be quick enough for many of us sadly, but together we are making change.

Keep on keeping on. We can do it.  #disabilitypride

Love Reminders

Since coming to live in Melbourne I’ve been blessed with awesome people who’ve supported me. The “love reminders”.

You know that some things have been challenging lately – but my art, my comedy and my home life are just…well the only word I can muster…magic.  Got to open Melbourne Fringe festival with a variety showcase about identity, diversity and pride with a bunch of local  heroes, Sally Goldner, James Williams, Kath Duncan, Naomi Chainey, Larissa MacFarlane and Yvonne Fein.  I was very lucky to be mentored by the awesome Nelly Thomas as part of the Melbourne Fringe Navigate mentorship.  A big thank you the Fringe team (and special thanks to Carly Findlay, Patrick Hayes and Laura Milke) – you are legends.

ticketsonmyself
Image description: Jacci standing on stage dressed as burlesque x circus x queer zombie Marie Antionette with James Williams on guitar with a look of concentration on his face. Behind them in a screen with the words “I’ve filled in your forms, you’ve already got the information. Photo by Nelly Thomas.

I’ve had one amazing workplace where I was privileged to work with some of Australia’s biggest brains and expertise in the violence prevention field.  Since early October it’s been bumpy with change (some of it quite nasty).

BUT! While the daily challenges still exists I’ve been lifted up and reminded of my value by fellow artists, scholars, comedians and friends (new and old).  I’m shouting out to a few here, but there are lots of you and I love you all.

I was faced with a no fault eviction the day after the show (September 13) and for a while it felt like everything I had done was for nothing.  The house move was hard – but made so much easier by wonderful people. Together we did it and have a new home I love.  A special thank you to Nelly Thomas for her support during this period.

These challenges are made harder by the world around us as Autistic people.  It’s really important we don’t have people around us who are ableist, but who believe we can get through.

*A reminder of some of this challenge is this article by Terra Vance sums up how a lot of us spectrum folk feel about the challenges of the neurotypical world present us – https://blogs.psychcentral.com/aspie/2019/05/308/

I am very fortunate people have banded around me and lifted me up.

People reminded me that speaking up when you need help is healthy. That is doesn’t mean you are weak or that you “have problems” – it means you are strong. This blog is intended as a testimony to that.

The bad old days of letting feelings fester and not being honest about situations should be over.

We know that approach – of pretending everything is okay when they are not causes mental health to decline.

I am resilient because I’m honest about my feelings.

I am resilient because I walk away from toxic people and situations.  No, actually I run now.

I’m about to publish my first book. I do great comedy that I love. Yeah things are tiring – but that’s life for people like me.

My home life is fucking brilliant.

My commitment just before my 49th birthday is this – I will not tolerate hate and I won’t listen to people who sanction hate.  I’m going to stick with the love reminders.

I’m queer, autistic and proud. These are good things to be.